No more restrictions!
I can eat what I want to. Go where I want to (including church, crowded places, and airplane travel). And I can basically resume life as normal (with the exception of having to drag oxygen everywhere until my lungs more fully recover).
Yahoo! Just in time for the holidays.
So now that I can attend Sunday School and Relief Society, it's Christmas Day and we're not having those. Oh well. Just one more week to wait.
Merry Christmas and Happy New Year!
Purple Everywhere
Daily Herald picture
Friday, December 23, 2011
Thursday, December 15, 2011
My oncologist said something recently that made me stop and ponder.
I mentioned that I'm discouraged with how long it's taking to recover from the transplant. I'm still fatigued and needing oxygen 24/7.
She said she wasn't surprised at all. "After all, your body has a memory of what it's been through so it's healing from all three occurrences of cancer this time."
Wow! So my body this time is having to heal from chemo when I was 7 and 8 (MOPP and CCNU) and radiation, from chemo 4 years ago (ADV), and from chemo (ICE), radiation, and the tranplant with high-dose chemo (BCNU, Melphalan, Ara-C, and Etoposide).
Whew! No wonder I'm so tired!
I mentioned that I'm discouraged with how long it's taking to recover from the transplant. I'm still fatigued and needing oxygen 24/7.
She said she wasn't surprised at all. "After all, your body has a memory of what it's been through so it's healing from all three occurrences of cancer this time."
Wow! So my body this time is having to heal from chemo when I was 7 and 8 (MOPP and CCNU) and radiation, from chemo 4 years ago (ADV), and from chemo (ICE), radiation, and the tranplant with high-dose chemo (BCNU, Melphalan, Ara-C, and Etoposide).
Whew! No wonder I'm so tired!
Wednesday, December 14, 2011
100-day follow up is FINALLY scheduled for next Tuesday, the 20th, and I have only the following questions to ask, all under the category of "When can I. . .":
* Eat grapes and sushi?
* Stop leaving the room whenever vacuuming or dusting are being done and do them myself?
* Have plants and flowers in our house and work with soil?
* Swim and sit in a hot tub?
* Share hand towels with my husband?
* Stop having to wash bedding every week and towels every two days?
* Fly on a plane?
* Try food samples at places such as Costco?
* Eat soft-serve ice cream?
* Stop needing to wear a HEPA mask whenever I'm in a hospital or doctor's office?
* Shake hands?
* Sit in a room filled with people (attend Sunday School and Relief Society or eat in restaurants)?
* Pet our dog without having to wash my hands immediately afterward?
* Stop taking Acyclovir (anti-viral) and Dapson (to prevent pneumonia)?
* Start taking Crestor? Do I need to start taking it?
In addition,
* What can I do to increase my red blood cell count? Is a low level contributing to needing oxygen 24/7?
* What were the results of the PET, chest x-ray, and blood tests?
Whew! That's all.
* Eat grapes and sushi?
* Stop leaving the room whenever vacuuming or dusting are being done and do them myself?
* Have plants and flowers in our house and work with soil?
* Swim and sit in a hot tub?
* Share hand towels with my husband?
* Stop having to wash bedding every week and towels every two days?
* Fly on a plane?
* Try food samples at places such as Costco?
* Eat soft-serve ice cream?
* Stop needing to wear a HEPA mask whenever I'm in a hospital or doctor's office?
* Shake hands?
* Sit in a room filled with people (attend Sunday School and Relief Society or eat in restaurants)?
* Pet our dog without having to wash my hands immediately afterward?
* Stop taking Acyclovir (anti-viral) and Dapson (to prevent pneumonia)?
* Start taking Crestor? Do I need to start taking it?
In addition,
* What can I do to increase my red blood cell count? Is a low level contributing to needing oxygen 24/7?
* What were the results of the PET, chest x-ray, and blood tests?
Whew! That's all.
Wednesday, December 7, 2011
Monday, December 5, 2011
It's been a long time! There hasn't been much to report though--just tired of lugging oxygen tanks or cords with me everywhere I go and feeling rather tired and weak. It's pretty common for me to sleep in every morning until about 10 a.m., and I'm pretty content to just sit and be a couch potato. This is not who I'm used to being. I hope it gets better.
My appetite has fully returned. Now it doesn't seem like any smells or thoughts of any foods turn my stomach any longer. I just have to be careful to increase my activity so that I can keep getting healthier and stronger and keep losing weight.
$135.776.31. Want to know what LDS Hospital charges for three weeks of inpatient treatment for a bone marrow transplant? $135.776.31 and that doesn't cover all of the specialists in a hospital that bill separately. That's just the hospital's portion. And our portion? $0.00. Hooray for insurance and for meeting out-of-pocket maximums earlier in the year!
My 100th day since transplant was yesterday. It's a big milestone that the doctors track, so I'll be meeting with them on the 19th of December. Hopefully, I'll get to stop taking antiviral, antibacterial, and antifungal medication then. More things to look forward to :-)
My appetite has fully returned. Now it doesn't seem like any smells or thoughts of any foods turn my stomach any longer. I just have to be careful to increase my activity so that I can keep getting healthier and stronger and keep losing weight.
$135.776.31. Want to know what LDS Hospital charges for three weeks of inpatient treatment for a bone marrow transplant? $135.776.31 and that doesn't cover all of the specialists in a hospital that bill separately. That's just the hospital's portion. And our portion? $0.00. Hooray for insurance and for meeting out-of-pocket maximums earlier in the year!
My 100th day since transplant was yesterday. It's a big milestone that the doctors track, so I'll be meeting with them on the 19th of December. Hopefully, I'll get to stop taking antiviral, antibacterial, and antifungal medication then. More things to look forward to :-)
Tuesday, October 11, 2011
Wednesday, September 28, 2011
Third radiation treatment today.
It's such a hard process--NOT! Although I am surprised by the size of what we're radiating. I was expecting a 3x1" little horizontal strip in the bend of my left leg. Instead, it's about a 2" wide by 6" long VERTICAL strip that starts about the bend of my leg and heads north, covering about 1/4 of my stomach. It has to do with how the two lymph node chains that had Hodgkins lay in my body.
So, for every day, Monday through Friday, for 14 treatments, I get to follow the same routine.
Leave the house around 10:35 a.m. to go about 2 miles south to the north side of American Fork Hospital. Hold mask in place as I check in at the left side of the oncologists' offices. Head back to the treatment room.
Meet Dana, Katy, and Kelsey and head into the treatment room. Expose my stomach, which is easiest if I wear a skirt, and lay a towel across it. Lay on a hard metal table. Wait while the three technicians line up the stickers on my body (one on each hip and one in the middle of my stomach) with three different lasers in the room. Lay heavy so that they're respositioning me, sometimes by micro amounts, and I'm not trying to help them by moving myself. Otherwise, I move too much and it takes longer to correctly align my body.
They can shape the radiation beams now so the heavy leaded shields that I remember from childhood are a thing of the past. The outline drawn on my stomach matches the radiation field that's programmed into the machine.
After about five minutes of positioning, which is the longest part of the entire processs, we're ready to start the treatment. The technicians retreat behind about a 6" leaded thick door. Sure. They get to retreat to safety, while I'm feeling pretty vulnerable. Oh well.
Are you ready for this?
I lay as still as I can, while breathing normally, and count while a loud buzzing noise sounds from the huge round machine head that's positioned about 8" above my stomach. One thousand one, one thousand two. . . The buzzing stops when I get to 12 seconds. 12 seconds? That's all? Wow!
Then the machine rotates 180 degrees and reverses the radiation field on it's screen, so it's now positioned directly under me. The buzzing starts again and I count to 10 seconds this time.
We're done! The technicians come back into the room, move the table out from under the machine, and I'm free to adjust my clothing and leave.
By the time we drive back home, it's been less than thirty minutes since we walked out the door. Now that's fast. I seem to recall having to lay still for at least 15 or 20 minutes as a child for each treatment.
Today's radiation is so much more precise. I'm getting half the dose I did as a child and we can radiate the back side also (because one of the lymph node chains curves and starts heading back towards the spine so it's easier to treat it from the back).
It really pays to speak up. Remember that, Trish! It didn't make sense to me to have permanent tattoos for about 2.5 weeks of treatments. Why be permanently marked? So I asked if there were any alternatives. Ta duh--the stickers! A small cross on each hip to line up rotation of my body, then another small cross in the middle of the radiation field on my stomach. Two more stickers define the top and bottom of the radiation fields. That's it. They work great and have needed to be changed only once.
Hurray for modern medicine advances. And no long-term side effects!
It's such a hard process--NOT! Although I am surprised by the size of what we're radiating. I was expecting a 3x1" little horizontal strip in the bend of my left leg. Instead, it's about a 2" wide by 6" long VERTICAL strip that starts about the bend of my leg and heads north, covering about 1/4 of my stomach. It has to do with how the two lymph node chains that had Hodgkins lay in my body.
So, for every day, Monday through Friday, for 14 treatments, I get to follow the same routine.
Leave the house around 10:35 a.m. to go about 2 miles south to the north side of American Fork Hospital. Hold mask in place as I check in at the left side of the oncologists' offices. Head back to the treatment room.
Meet Dana, Katy, and Kelsey and head into the treatment room. Expose my stomach, which is easiest if I wear a skirt, and lay a towel across it. Lay on a hard metal table. Wait while the three technicians line up the stickers on my body (one on each hip and one in the middle of my stomach) with three different lasers in the room. Lay heavy so that they're respositioning me, sometimes by micro amounts, and I'm not trying to help them by moving myself. Otherwise, I move too much and it takes longer to correctly align my body.
They can shape the radiation beams now so the heavy leaded shields that I remember from childhood are a thing of the past. The outline drawn on my stomach matches the radiation field that's programmed into the machine.
After about five minutes of positioning, which is the longest part of the entire processs, we're ready to start the treatment. The technicians retreat behind about a 6" leaded thick door. Sure. They get to retreat to safety, while I'm feeling pretty vulnerable. Oh well.
Are you ready for this?
I lay as still as I can, while breathing normally, and count while a loud buzzing noise sounds from the huge round machine head that's positioned about 8" above my stomach. One thousand one, one thousand two. . . The buzzing stops when I get to 12 seconds. 12 seconds? That's all? Wow!
Then the machine rotates 180 degrees and reverses the radiation field on it's screen, so it's now positioned directly under me. The buzzing starts again and I count to 10 seconds this time.
We're done! The technicians come back into the room, move the table out from under the machine, and I'm free to adjust my clothing and leave.
By the time we drive back home, it's been less than thirty minutes since we walked out the door. Now that's fast. I seem to recall having to lay still for at least 15 or 20 minutes as a child for each treatment.
Today's radiation is so much more precise. I'm getting half the dose I did as a child and we can radiate the back side also (because one of the lymph node chains curves and starts heading back towards the spine so it's easier to treat it from the back).
It really pays to speak up. Remember that, Trish! It didn't make sense to me to have permanent tattoos for about 2.5 weeks of treatments. Why be permanently marked? So I asked if there were any alternatives. Ta duh--the stickers! A small cross on each hip to line up rotation of my body, then another small cross in the middle of the radiation field on my stomach. Two more stickers define the top and bottom of the radiation fields. That's it. They work great and have needed to be changed only once.
Hurray for modern medicine advances. And no long-term side effects!
Thursday, September 22, 2011
Okay, met with Dr. Jay Clark, local radiation oncologist (because, apparently you can never meet with too many oncologists). He's recommending 14 treatments of what they call consolidated radiation. It's consolidated because there's no cancer that they're treating--just trying to prevent future occurrences.
I have to have a CT with IV contrast so they can map out the treatment field, so I have to come back in 45 minutes and meet at American Fork Hospital's Radiation department, which I do. After a 15-minute wait, I see one of Dr. Clark's technicians who guides me back to a separate CT room that's reserved for cancer patients.
Time to start the IV. Only the CT technician is one of the people at the hospital that can never find my veins. Why didn't I just ask for someone else immediately? Note to self to do that in the future--skip step one and just go directly to step two.
I tell him where my best vein is and he proceeds to dig around and not find anything, so on to attempt number two. Only this time, he acts like he's going to get back at me for not having good veins and tries for one in my right wrist. OUCH! I should have stopped him immediately from trying there too. Haven't I learned to speak up for myself yet? Come on, Trish!
Sure enough, he can't really get a good vein in my wrist though. But he does manage to cause quite a bit of pain, bruising, and swelling. He must have popped through a vein, causing a hematoma, which must be right next to a nerve because it stays painful and bruised for two days!
Finally, he calls for someone else. She tries the left arm to no avail. The technician calls Dr. Clark to see if the contrast is really necessary. He wants us to try one more time and then give up if we can't get the IV started. The ER technician moves back to my best vein for the last attempt. After a little bit of digging, she gets it. Hurray!
Now for the CT scan. Should be simple, right? After all, I bet I've had over 20 CT scans by this point. Oh crud! I forgot that the last time I had the contrast (for the heart catheterization) that I had a strange reaction to it. Sure enough, by the time I get to Dale back in the waiting room, I can't breathe. Darn it.
Back to radiology we go, where I can be monitored for a while and make sure everything returns to normal. I'm sure the reaction has something to do with a high blood pressure (from being in pain after three attempts and one directly involving at least one nerve in my wrist). I've got to speak up and avoid these scenarios! High blood pressure + CT contrast = short of breath for me.
After an hour, my blood pressure and my oxygen levels are back to normal. I can breathe normally so we finally get to leave. Time to go back to bed after all of that excitement!
I have to have a CT with IV contrast so they can map out the treatment field, so I have to come back in 45 minutes and meet at American Fork Hospital's Radiation department, which I do. After a 15-minute wait, I see one of Dr. Clark's technicians who guides me back to a separate CT room that's reserved for cancer patients.
Time to start the IV. Only the CT technician is one of the people at the hospital that can never find my veins. Why didn't I just ask for someone else immediately? Note to self to do that in the future--skip step one and just go directly to step two.
I tell him where my best vein is and he proceeds to dig around and not find anything, so on to attempt number two. Only this time, he acts like he's going to get back at me for not having good veins and tries for one in my right wrist. OUCH! I should have stopped him immediately from trying there too. Haven't I learned to speak up for myself yet? Come on, Trish!
Sure enough, he can't really get a good vein in my wrist though. But he does manage to cause quite a bit of pain, bruising, and swelling. He must have popped through a vein, causing a hematoma, which must be right next to a nerve because it stays painful and bruised for two days!
Finally, he calls for someone else. She tries the left arm to no avail. The technician calls Dr. Clark to see if the contrast is really necessary. He wants us to try one more time and then give up if we can't get the IV started. The ER technician moves back to my best vein for the last attempt. After a little bit of digging, she gets it. Hurray!
Now for the CT scan. Should be simple, right? After all, I bet I've had over 20 CT scans by this point. Oh crud! I forgot that the last time I had the contrast (for the heart catheterization) that I had a strange reaction to it. Sure enough, by the time I get to Dale back in the waiting room, I can't breathe. Darn it.
Back to radiology we go, where I can be monitored for a while and make sure everything returns to normal. I'm sure the reaction has something to do with a high blood pressure (from being in pain after three attempts and one directly involving at least one nerve in my wrist). I've got to speak up and avoid these scenarios! High blood pressure + CT contrast = short of breath for me.
After an hour, my blood pressure and my oxygen levels are back to normal. I can breathe normally so we finally get to leave. Time to go back to bed after all of that excitement!
Tuesday, September 20, 2011
Monday, September 19, 2011
16 radiation treatments are now recommended? What? I really don't understand (and don't like) this.
Apparently, if the Hodgkins tried to come back some day, the first place it would try is the last place it was--my leg. By radiating the area, we eliminate that place and possibly keep it from ever coming back. More insurance against further occurrences.
Plus, there's nothing else in the area to damage, so no long-term effects either. Crud! I really want to be done, finished, complete with all things cancer, but it looks like I'll be visiting with our local radiation oncologist every day, Monday-Friday, for two weeks starting soon.
Just more fun to add to the equation, I guess. Permanent tattoos, more CT scans, 15 minutes of laying absolutely still for 16 treatments. Oh joy!
First appointment is Thursday. We'll see how that goes.
Apparently, if the Hodgkins tried to come back some day, the first place it would try is the last place it was--my leg. By radiating the area, we eliminate that place and possibly keep it from ever coming back. More insurance against further occurrences.
Plus, there's nothing else in the area to damage, so no long-term effects either. Crud! I really want to be done, finished, complete with all things cancer, but it looks like I'll be visiting with our local radiation oncologist every day, Monday-Friday, for two weeks starting soon.
Just more fun to add to the equation, I guess. Permanent tattoos, more CT scans, 15 minutes of laying absolutely still for 16 treatments. Oh joy!
First appointment is Thursday. We'll see how that goes.
Wednesday, September 14, 2011
Wednesday, September 14, 2011
So my blood counts came in fast and furious. The second day was something like 14,000 neutrophils and they just kept escalating from there. So, I got to leave the hospital last Thursday--a day shy of staying there three weeks. Not bad! They said to plan on at least three weeks, more like four; and I wasn't even in there three. Yahoo! Thanks for all the prayers!
I was discharged with my central line still in place (boo!) and on oxygen (double boo!). Why is is that my lungs always want to join the party late? Don't they know I have places to be and things to do?
Now BMT wants me to see a radiation oncologist to see if radiation might be helpful. What's the point? There's no cancer on the PET scan. Now we've entirely killed off my bone marrow and done a second round of high-dose chemo after that PET scan. And NOW you want to talk about possible radiation? I don't get it. I guess we'll go to the consult and see what they have to say, but I can't see how they're going to convince me to go through more torture after I'm supposed to be healing from it all.
I had a follow up appointment with BMT yesterday. They're not very happy that I've lost about eight pounds since being discharged. That makes me very happy, but they're saying it's the wrong time to lose weight. When you weigh about twice what you're supposed to, how can any time be the wrong time to lose weight? Another question that just doesn't make sense to me, but I promised I'd do my best to eat better.
It's hard to eat when your stomach is constantly flip flopping. What sounds good one moment makes me gag the next. And I keep hitting a point with any food where I'm done, I've had enough. If I try to force more down my stomach, we're all going to be in trouble. I don't understand this, and I don't know how long it might last; but it makes eating a greater challenge.
I was discharged with my central line still in place (boo!) and on oxygen (double boo!). Why is is that my lungs always want to join the party late? Don't they know I have places to be and things to do?
Now BMT wants me to see a radiation oncologist to see if radiation might be helpful. What's the point? There's no cancer on the PET scan. Now we've entirely killed off my bone marrow and done a second round of high-dose chemo after that PET scan. And NOW you want to talk about possible radiation? I don't get it. I guess we'll go to the consult and see what they have to say, but I can't see how they're going to convince me to go through more torture after I'm supposed to be healing from it all.
I had a follow up appointment with BMT yesterday. They're not very happy that I've lost about eight pounds since being discharged. That makes me very happy, but they're saying it's the wrong time to lose weight. When you weigh about twice what you're supposed to, how can any time be the wrong time to lose weight? Another question that just doesn't make sense to me, but I promised I'd do my best to eat better.
It's hard to eat when your stomach is constantly flip flopping. What sounds good one moment makes me gag the next. And I keep hitting a point with any food where I'm done, I've had enough. If I try to force more down my stomach, we're all going to be in trouble. I don't understand this, and I don't know how long it might last; but it makes eating a greater challenge.
Saturday, September 3, 2011
Saturday, September 3, 2011
New cells are growing. It's definitely a party now!
100 neutrophils showed up in my blood stream this morning. They battle most of the infections within the body, and it also means that the other white blood cell counts should follow.
When I have 500 neutrophils--and everything else looks good--I can go home.
My nurse this afternoon thinks my neutrophils will be in the 200-300 range tomorrow. I like her! I'll keep her! And I'm totally for her plan.
My stomach must be feeling better because I've been craving foods this afternoon: a mango smoothie and good french fries.
Party Time!
100 neutrophils showed up in my blood stream this morning. They battle most of the infections within the body, and it also means that the other white blood cell counts should follow.
When I have 500 neutrophils--and everything else looks good--I can go home.
My nurse this afternoon thinks my neutrophils will be in the 200-300 range tomorrow. I like her! I'll keep her! And I'm totally for her plan.
My stomach must be feeling better because I've been craving foods this afternoon: a mango smoothie and good french fries.
Party Time!
Wednesday, August 31, 2011
It's been three days of dealing with a crampy stomach and a violently ill stomach any time I'm forced to think about food. Not fun!
Now, I have to eat at least 1,000 calories or we have to start TPN (IV nutrition). I haven't been doing so well because the calorie counts from the last two days were in the 500s. So an order for half TPN is written. Because I know my body and its limits, I plead for just one more day. Every day away from chemo gets easier and easier. I really think I can choke down 1,000 calories if I work at it.
We're basically playing a waiting game now. Wait to see if the minerals for my heart will correct themselves because, lately, my potassium, calcium, and magnessium levels are all over the board.
Wait to see if any of the stem cells are starting to graft in so blood counts will rise. Currently, I have absolutely no white blood cells in my body. 0.0. Eeerie, huh?
Wait to see if any of these slight temperature spikes can be cultured and treated by a specific antibiotic, antivirus, or antifungal.
At first I was told that I'd probably start feeling better on Friday. Now, it seems that bar has been moved to Monday. Oh well.
We're getting really close to the point where those stem cells should be putting on their big girl panties and joining reality. Now we wait.
And as we wait, I'm reminded how grateful I am for Priesthood Blessings, for prayers, and caring friends and neighbors. There are lots of other patients who are really miserable. They can't find the right combination of anti-nausea medications that work for them, and they're battling serious infections with no immune system. I've been so blessed to experience just the tiniest, nth, degree of what it could have been, but isn't, for me. Thank you, Heavenly Father!
Now, I have to eat at least 1,000 calories or we have to start TPN (IV nutrition). I haven't been doing so well because the calorie counts from the last two days were in the 500s. So an order for half TPN is written. Because I know my body and its limits, I plead for just one more day. Every day away from chemo gets easier and easier. I really think I can choke down 1,000 calories if I work at it.
We're basically playing a waiting game now. Wait to see if the minerals for my heart will correct themselves because, lately, my potassium, calcium, and magnessium levels are all over the board.
Wait to see if any of the stem cells are starting to graft in so blood counts will rise. Currently, I have absolutely no white blood cells in my body. 0.0. Eeerie, huh?
Wait to see if any of these slight temperature spikes can be cultured and treated by a specific antibiotic, antivirus, or antifungal.
At first I was told that I'd probably start feeling better on Friday. Now, it seems that bar has been moved to Monday. Oh well.
We're getting really close to the point where those stem cells should be putting on their big girl panties and joining reality. Now we wait.
And as we wait, I'm reminded how grateful I am for Priesthood Blessings, for prayers, and caring friends and neighbors. There are lots of other patients who are really miserable. They can't find the right combination of anti-nausea medications that work for them, and they're battling serious infections with no immune system. I've been so blessed to experience just the tiniest, nth, degree of what it could have been, but isn't, for me. Thank you, Heavenly Father!
Monday, August 29, 2011
Sunday, August 28, 2011
I guess it's good to be at the point where you're bored in the hospital. It means you can't be feeling too bad, right?
I texted some of my teenage nieces and nephews for their best advice of what to try that's fun while I'm here. Their best tips include the following suggestions:
* Flirt with the staff (Karli).
* Watch all of the Star Wars movies in order (Clark).
* Plan a quest to find the Holy Grail (Chris).
* Time the nurses to see which animal sounds or accents they respond fastest to (Jessica).
* Build sculptures out of the toilet paper rolls and macaroni and cheese to sell on eBay.
Good thing I have my sisters (my personal entertainment committee) and my nieces and nephews to add some levity and fun to this experience!
I texted some of my teenage nieces and nephews for their best advice of what to try that's fun while I'm here. Their best tips include the following suggestions:
* Flirt with the staff (Karli).
* Watch all of the Star Wars movies in order (Clark).
* Plan a quest to find the Holy Grail (Chris).
* Time the nurses to see which animal sounds or accents they respond fastest to (Jessica).
* Build sculptures out of the toilet paper rolls and macaroni and cheese to sell on eBay.
Good thing I have my sisters (my personal entertainment committee) and my nieces and nephews to add some levity and fun to this experience!
Saturday, August 27, 2011
Friday, August 26, 2011
It's day 0, which means it's the first transplant day. According to all of the workers, it also makes it my birthday or my rebirthday as we rebirth these stem cells back into my marrow.
Happy Birthday to me! Happy Birthday to me! The nurses have written it on my board and say it to me as I pass them on walks in the hallways.
The process goes pretty well. It takes one guy from the U of U reaching in a liquid nitrogen container to pull out a case of stored cells. Each case then contains about five bags of frozen cells. He warms each bag of cells in a water bath (like an immersion circulator for all of you who have ever watched Iron Chef America) to unfreeze them as we're ready for them.
He then hands off each bag to a nurse who skillfully has to set up each bag to drip properly into my veins and makes sure that every last drop is flushed from those tiny bags.
I expected the color of the cells to look like an ordinary deep red blood color. Instead, they look pink, like the color of cherry gelatin powder. Interesting.
What's also interesting is the smell associated with the stored cells. They preserve them in DMSO, which smells like a cross between garlic and creamed corn. I can't smell it, but Dale can. And one nurse that we passed in the hall asked if I'd gotten stem cells today. When I replied in the affirmative, she said she knew because she could smell them. Weird!
The only other strange thing was that my blood pressure decided to drop off towards the end of the transplant--80/33. So they lowered the head of my bed, raised my feet, and started running more fluids through my line. It worked. About 30 minutes later, I felt back to normal.
So how many people does it take to do a stem cell transplant? Two for about three hours each. My nurse, my favorite nurse, didn't even get to eat lunch until after 2:30 and she's allergic to the DMSO, so she was really itching to get out of my room.
We'll repeat the whole process again on Saturday, and that will give my body over 9 million stem cells to work with and rebuild with.
Happy Birthday to me! Happy Birthday to me! The nurses have written it on my board and say it to me as I pass them on walks in the hallways.
The process goes pretty well. It takes one guy from the U of U reaching in a liquid nitrogen container to pull out a case of stored cells. Each case then contains about five bags of frozen cells. He warms each bag of cells in a water bath (like an immersion circulator for all of you who have ever watched Iron Chef America) to unfreeze them as we're ready for them.
He then hands off each bag to a nurse who skillfully has to set up each bag to drip properly into my veins and makes sure that every last drop is flushed from those tiny bags.
I expected the color of the cells to look like an ordinary deep red blood color. Instead, they look pink, like the color of cherry gelatin powder. Interesting.
What's also interesting is the smell associated with the stored cells. They preserve them in DMSO, which smells like a cross between garlic and creamed corn. I can't smell it, but Dale can. And one nurse that we passed in the hall asked if I'd gotten stem cells today. When I replied in the affirmative, she said she knew because she could smell them. Weird!
The only other strange thing was that my blood pressure decided to drop off towards the end of the transplant--80/33. So they lowered the head of my bed, raised my feet, and started running more fluids through my line. It worked. About 30 minutes later, I felt back to normal.
So how many people does it take to do a stem cell transplant? Two for about three hours each. My nurse, my favorite nurse, didn't even get to eat lunch until after 2:30 and she's allergic to the DMSO, so she was really itching to get out of my room.
We'll repeat the whole process again on Saturday, and that will give my body over 9 million stem cells to work with and rebuild with.
Wednesday, August 24, 2011
Wednesday, August 24, 2011
T - 2 days!
Last day for chemo, and it's Melphalan--one of the strongest chemo drugs I've ever had.
The worst side known side effect? Mouth sores or mucositis, large white sores in your mouth, on your tongue and gums, down your esophagus, and into your stomach. They make eating almost impossible and are often the cause for people to be fed intravenously while getting a bone marrow transplant.
There is hope, however! The smart folks at LDS Hospital have figured out that if your mouth is cold for a few minutes before Melphalan is infused into your body and for 30 minutes afterwards, the mouth sores are significantly reduced in number, duration, and intensity.
What does that mean to me? I get to eat popsicles, only the grape ones, for about an hour while Melphalan drips into my veins through my central line.
7.5 popsicles and slightly under an hour later, and I can finally quit shivering and keeping my mouth as cold as it can stand.
Now, when I open my mouth, my tongue is almost black with all of those artificial dyes and so are my gums and around my teeth. It's quite the affect for Halloween!
But aren't those artificial colors known to cause cancer? My sister, Tress, reminds me that those statements are effective only for California, so I'm okay hanging out in Utah. :-)
Last day for chemo, and it's Melphalan--one of the strongest chemo drugs I've ever had.
The worst side known side effect? Mouth sores or mucositis, large white sores in your mouth, on your tongue and gums, down your esophagus, and into your stomach. They make eating almost impossible and are often the cause for people to be fed intravenously while getting a bone marrow transplant.
There is hope, however! The smart folks at LDS Hospital have figured out that if your mouth is cold for a few minutes before Melphalan is infused into your body and for 30 minutes afterwards, the mouth sores are significantly reduced in number, duration, and intensity.
What does that mean to me? I get to eat popsicles, only the grape ones, for about an hour while Melphalan drips into my veins through my central line.
7.5 popsicles and slightly under an hour later, and I can finally quit shivering and keeping my mouth as cold as it can stand.
Now, when I open my mouth, my tongue is almost black with all of those artificial dyes and so are my gums and around my teeth. It's quite the affect for Halloween!
But aren't those artificial colors known to cause cancer? My sister, Tress, reminds me that those statements are effective only for California, so I'm okay hanging out in Utah. :-)
Tuesday, August 23, 2011
Tuesday, August 23, 2011
T - 3 days and counting.
Dr. Petersen, the director of the bone marrow team, stopped by on rounds to see me today. And left me breathless.
After a quick check, he said, "You're looking good and sounding good. One more day of chemo tomorrow, then no more chemo forever."
No more chemo forever? What kind of world is that? Chemo has been part of my world since I was 7 years old. I almost cried with delusional joy at the thought.
No more MOPP, CCNU, ADV, ICE, BEAM, or any other kind of chemo?
That's what I'm working towards. That's my goal. NO MORE CHEMO FOREVER!
Dr. Petersen, the director of the bone marrow team, stopped by on rounds to see me today. And left me breathless.
After a quick check, he said, "You're looking good and sounding good. One more day of chemo tomorrow, then no more chemo forever."
No more chemo forever? What kind of world is that? Chemo has been part of my world since I was 7 years old. I almost cried with delusional joy at the thought.
No more MOPP, CCNU, ADV, ICE, BEAM, or any other kind of chemo?
That's what I'm working towards. That's my goal. NO MORE CHEMO FOREVER!
Monday, August 22, 2011
Sunday, August 21, 2011
T -5 day.
Part of the LDS branch here at the hospital comes to bless the Sacrament for me. I can't go down to the services. Too many germs. And they can't kneel on my floor because that would leave more germs behind, but they're very kind to come and help me feel at least that connection to the Sabbath.
A nurse tells me about one guy who cleaned everything in his house for the two weeks preceeding his admission--dusted, cleaned out the fish tank, groomed his dog, etc. By the time he got to the hospital, his system was so overloaded with dust, viruses, bacteria, and molds, that he didn't survive the transplant. Darn! I cleaned out our computer hard drive before I was admitted, but I don't think there's too many germs associated with that activity.
So get this. They want me to walk 20 minutes a day, three different times a day. Doesn't sound too bad, does it? I try to walk a minimum of 30 minutes a day at home on the treadmill, so it sounds like a pretty easy goal. Huh! So give the girl whose lungs don't want to cooperate all these extra parameters to deal with. First, chemo that is known to make you dizzy and uncordinated. Try concentrate on breathing and walking straight now. Second, a pig mask that is thick and heavy and cuts off almost all outside air. Now, try to breathe while you walk! Third, add pulling an IV pole for an extra load for your lungs to deal with. Even when they add oxygen under the pig mask, now I have to lug the portable oxygen tank also on these daily excursions. Whew! I can't wait until the 20 minutes is over each time. I think I'll ask about maybe using the portable stationary bikes they have instead.
Oh, and it's not just one dose of chemo every day. Days 2-5 are 1 hour of chemo (Ara-C) in the morning around 9:00 a.m. Then Etoposide about 4:00 p.m. Then another dose of Ara-C in the evening--around 9:00 a.m. It's triple chemo time for me!
Although Dale and I are surprised how well I feel. We both thought at this point in the game I'd be much sicker. Hooray!
Part of the LDS branch here at the hospital comes to bless the Sacrament for me. I can't go down to the services. Too many germs. And they can't kneel on my floor because that would leave more germs behind, but they're very kind to come and help me feel at least that connection to the Sabbath.
A nurse tells me about one guy who cleaned everything in his house for the two weeks preceeding his admission--dusted, cleaned out the fish tank, groomed his dog, etc. By the time he got to the hospital, his system was so overloaded with dust, viruses, bacteria, and molds, that he didn't survive the transplant. Darn! I cleaned out our computer hard drive before I was admitted, but I don't think there's too many germs associated with that activity.
So get this. They want me to walk 20 minutes a day, three different times a day. Doesn't sound too bad, does it? I try to walk a minimum of 30 minutes a day at home on the treadmill, so it sounds like a pretty easy goal. Huh! So give the girl whose lungs don't want to cooperate all these extra parameters to deal with. First, chemo that is known to make you dizzy and uncordinated. Try concentrate on breathing and walking straight now. Second, a pig mask that is thick and heavy and cuts off almost all outside air. Now, try to breathe while you walk! Third, add pulling an IV pole for an extra load for your lungs to deal with. Even when they add oxygen under the pig mask, now I have to lug the portable oxygen tank also on these daily excursions. Whew! I can't wait until the 20 minutes is over each time. I think I'll ask about maybe using the portable stationary bikes they have instead.
Oh, and it's not just one dose of chemo every day. Days 2-5 are 1 hour of chemo (Ara-C) in the morning around 9:00 a.m. Then Etoposide about 4:00 p.m. Then another dose of Ara-C in the evening--around 9:00 a.m. It's triple chemo time for me!
Although Dale and I are surprised how well I feel. We both thought at this point in the game I'd be much sicker. Hooray!
Friday, August 19, 2011
Early arrival at LDS Hospital--7:00 a.m. Dale and I are the first people back in the Radiology nursing department, so it's quiet--except for one nurse who cannot keep from laughing loudly at almost everything. It's funny to hear such boisterous noises when we woke up at 5:30 to come, but it's better than the unusally sterile quietness that pervades most hospitals.
The central line placement goes very well. And Meredith, the PA who places it, tells me that I'm her best patient ever--male or female. I opt for no sedation (of course!) and she says I'm only her third patient without sedation. The first was a pregnant mom and sedation would damage her baby. The second was a macho rock climber who cried the moment they brought him back into the procedure room. She said the pain isn't too bad but most people cringe when they know what all the tugging and pulling means and that's when they freak out. Not me.
They move me from the procedure table to my own bed to keep me sitting up while they pull the port. Once again, fairly easy and we're on our way for another chest x-ray, then admission to the 8th floor.
They warned me that half of the rooms on the East 8th side face a building with a lovely view of a cement wall. Sure enough, that's my room. It feels like I'm in prison, and I immediately start negotiating for a room with a view. I might have to wait a day for it, but I'm okay with that. I just can't handle 28 days or so in a prison room.
It seems no one was really prepared for me to come today, at least on the floor. There are no orders for medications, meals, or standard protocols of any kind. Chemo starts really late--around 11:00 p.m. It's BCNU, which is mostly alcohol, so we were told to expect some weird side effects. However, Dale leaves before it's given and I never felt anything weird so I guess we missed the opportunity of seeing what I'm like when intoxicated or a little tipsy. I think I'm okay with that outcome :-)
Transplant - 7 days (T - 7) and counting!
The central line placement goes very well. And Meredith, the PA who places it, tells me that I'm her best patient ever--male or female. I opt for no sedation (of course!) and she says I'm only her third patient without sedation. The first was a pregnant mom and sedation would damage her baby. The second was a macho rock climber who cried the moment they brought him back into the procedure room. She said the pain isn't too bad but most people cringe when they know what all the tugging and pulling means and that's when they freak out. Not me.
They move me from the procedure table to my own bed to keep me sitting up while they pull the port. Once again, fairly easy and we're on our way for another chest x-ray, then admission to the 8th floor.
They warned me that half of the rooms on the East 8th side face a building with a lovely view of a cement wall. Sure enough, that's my room. It feels like I'm in prison, and I immediately start negotiating for a room with a view. I might have to wait a day for it, but I'm okay with that. I just can't handle 28 days or so in a prison room.
It seems no one was really prepared for me to come today, at least on the floor. There are no orders for medications, meals, or standard protocols of any kind. Chemo starts really late--around 11:00 p.m. It's BCNU, which is mostly alcohol, so we were told to expect some weird side effects. However, Dale leaves before it's given and I never felt anything weird so I guess we missed the opportunity of seeing what I'm like when intoxicated or a little tipsy. I think I'm okay with that outcome :-)
Transplant - 7 days (T - 7) and counting!
Thursday, August 18, 2011
Wednesday, August 17, 2011
Ah, peace and comfort (and more purple!) in the Mt. Timp. temple. The impressions I have are varied and hard to put into words, but I know that I'll survive the transplant, that not to proceed would be the equivalent of giving up because the Hodgkins would keep coming back--more and more frequently--and chemo would be less and less able to fight it, that there might be some complications from the transplant but I'll still be able to help others and learn and grow myself with them, and that the trials I've had so far have strengthened me and that strength will serve me well through the next few weeks and months.
Okay, we can and will keep going.
The family conference at LDS Hospital is longer than I anticipated and mostly a rehash of what we've already covered. What happens before, during, and after the transplant. What to expect. What the rules of the hospital ward are.
There are a few surprises: no visiting hours, no limits as to who can visit as long as they are healthy and over 14 (but exceptions can be made for age), I can wear my own clothes while there, and that isn't going to be a quiet and restful process in any way.
I have daily goals: walk four times a day for 20 minutes each time (wearing a heavy-duty "pig" mask, gown, and gloves each time), sit in a chair three times a day for at least 20 minutes each time, rinse my mouth every 30 minutes, practice expanding my lungs at least 4 times a day.
All that in additon to normal things like eating (even if I don't feel like it and it hurts to do so), showering, and having vitals checked every four hours--a.m. and p.m.
Whew! Is there going to be any time left for anything else? Why do they encourage me to pack so many things to do if it seems like every minutes is already scheduled for me? And is there a luggage or weight limit to the things I bring in because I've already accumulated quite a stack!
Oh, and there's a glitch. The insurance company and the hospital have yet to sign a legal contract that specifies at what level the health benefits are going to be paid because, while LDS Hospital is a preferred provider for almost everything, it isn't for the transplant process itself. We can't proceed until that contract is in place. So no port removal or central line placement tomorrow. The best we can hope for is that they get the contract figured out tomorrow and we can do everything on Friday: port removal, line placement, admission, and first day of chemo.
Please pray that the contract is negotiated by Thursday evening so that the transplant isn't delayed up to a week.
Okay, we can and will keep going.
The family conference at LDS Hospital is longer than I anticipated and mostly a rehash of what we've already covered. What happens before, during, and after the transplant. What to expect. What the rules of the hospital ward are.
There are a few surprises: no visiting hours, no limits as to who can visit as long as they are healthy and over 14 (but exceptions can be made for age), I can wear my own clothes while there, and that isn't going to be a quiet and restful process in any way.
I have daily goals: walk four times a day for 20 minutes each time (wearing a heavy-duty "pig" mask, gown, and gloves each time), sit in a chair three times a day for at least 20 minutes each time, rinse my mouth every 30 minutes, practice expanding my lungs at least 4 times a day.
All that in additon to normal things like eating (even if I don't feel like it and it hurts to do so), showering, and having vitals checked every four hours--a.m. and p.m.
Whew! Is there going to be any time left for anything else? Why do they encourage me to pack so many things to do if it seems like every minutes is already scheduled for me? And is there a luggage or weight limit to the things I bring in because I've already accumulated quite a stack!
Oh, and there's a glitch. The insurance company and the hospital have yet to sign a legal contract that specifies at what level the health benefits are going to be paid because, while LDS Hospital is a preferred provider for almost everything, it isn't for the transplant process itself. We can't proceed until that contract is in place. So no port removal or central line placement tomorrow. The best we can hope for is that they get the contract figured out tomorrow and we can do everything on Friday: port removal, line placement, admission, and first day of chemo.
Please pray that the contract is negotiated by Thursday evening so that the transplant isn't delayed up to a week.
Tuesday, August 16, 2011
We've talked about a bone marrow transplant for so long--almost two months. Now that we have a tentative schedule and it's almost here, I'm kind of freaking out.
It's almost here. Just 1-2 more normal days of freedom, then I'll be admitted for a month.
Is it wrong to say I don't want to? I don't want to leave my family and the simple comforts of my house. I don't want to miss that much work. I'll miss playing the organ and teaching Relief Society. I'll miss stretching out my hand at night to rest it against Dale's arm, hand, or back. I'll miss Tubber's soft hair and playful antics. I'll miss Miriam's first day of her senior year and Travis's first day of 8th grade. I'll miss various stages of Jordan's preparations to serve in the Sydney, Australia mission. There's so much to give up temporarily.
I'm such an emotional wreck, trying to get everything on my to-do list done before it's too late. Thank you, Dale, for understanding I just need to cry on your shoulder multiple times and release some of the losses I'm feeling.
Then, we get the final consent form for the transplant to preview before tomorrow's family conference at LDS Hospital. Summary? We're going to kill you. If we don't kill you, we'll make you wish you were dead. If you happen to survive, we're going to severely limit your quality of life in the future.
I know they have to tell you every possibility for full disclosure. However, if I wasn't scared before, I am now. So much that I'm questioning if we're doing the right thing. Aren't there alternatives to consider? Couldn't we just keep doing chemo whenever Hodgkins raises his incessant head?
Dale and I cannot figure this one out on our own, so we make arrangements to attend the temple in the morning.
Hopefully, I can sleep tonight with all of these demon thoughts of possible complications running through my head.
It's almost here. Just 1-2 more normal days of freedom, then I'll be admitted for a month.
Is it wrong to say I don't want to? I don't want to leave my family and the simple comforts of my house. I don't want to miss that much work. I'll miss playing the organ and teaching Relief Society. I'll miss stretching out my hand at night to rest it against Dale's arm, hand, or back. I'll miss Tubber's soft hair and playful antics. I'll miss Miriam's first day of her senior year and Travis's first day of 8th grade. I'll miss various stages of Jordan's preparations to serve in the Sydney, Australia mission. There's so much to give up temporarily.
I'm such an emotional wreck, trying to get everything on my to-do list done before it's too late. Thank you, Dale, for understanding I just need to cry on your shoulder multiple times and release some of the losses I'm feeling.
Then, we get the final consent form for the transplant to preview before tomorrow's family conference at LDS Hospital. Summary? We're going to kill you. If we don't kill you, we'll make you wish you were dead. If you happen to survive, we're going to severely limit your quality of life in the future.
I know they have to tell you every possibility for full disclosure. However, if I wasn't scared before, I am now. So much that I'm questioning if we're doing the right thing. Aren't there alternatives to consider? Couldn't we just keep doing chemo whenever Hodgkins raises his incessant head?
Dale and I cannot figure this one out on our own, so we make arrangements to attend the temple in the morning.
Hopefully, I can sleep tonight with all of these demon thoughts of possible complications running through my head.
Sunday, August 14, 2001
I'm sitting on the couch, visiting with our oldest son, when the doorbell rings. Travis goes to answer it. When the door opens, I think it's strange because I hear a few different voices in the background. I assume it's a group of his friends and don't think much of it until Travis hesistantly says, "Trish, it's for you."
Really? Who could be coming to visit me on a Sunday evening--unannounced?
I head towards the front door to see our entire front lawn covered with people--mostly women, some children, and two men--from the ward. And what's even more amazing is they're all wearing various shades of purple: shirts, dresses, hair bows, and purple ribbons tied everywhere.
It's such an amazing sight that I stop breathing for a few seconds. What an amazing display of support, concern, and love. I want to stand on the front porch, absorbing it all for a few minutes. However, I'm almost immediately herded into the middle of the pack for a picture and surrounded by such good friends.
What a blessing! I was looking around closely during Sacrament Meeting today, realizing that I wouldn't have a chance to see everyone for at least six weeks, and it was an overwhelmingly sobering and emotional thought. Now, here most of those whom I identified as missing the most are gathered together AND wearing purple.
After the pictures, things are being handed to me so fast that I can barely hold them all. So many things, so much love. Tears start streaming down my face without invitation.
So many cards--most of them in purple envelopes! Food: clam chowder, cucumber sandwiches, chicken alfredo, homemade bread. Treats: chocolate chip cookies, ginger snaps, Maddie's specialty, buttery concoctions that she added food coloring to to make purple (what else?). Books and bath salts.
And so many hugs! If you ever want to be bathed in love, just leave it to the members of the Cedar Hills 4th Ward! I would never have dreamed up such an outpouring, but it was perfect--absolutely perfect. Thank you to all who participated. You touched my soul and reminded me, once again, that I am not alone in this battle.
I hope to post pictures soon from the gathering, but I just couldn't wait any longer.
Really? Who could be coming to visit me on a Sunday evening--unannounced?
I head towards the front door to see our entire front lawn covered with people--mostly women, some children, and two men--from the ward. And what's even more amazing is they're all wearing various shades of purple: shirts, dresses, hair bows, and purple ribbons tied everywhere.
It's such an amazing sight that I stop breathing for a few seconds. What an amazing display of support, concern, and love. I want to stand on the front porch, absorbing it all for a few minutes. However, I'm almost immediately herded into the middle of the pack for a picture and surrounded by such good friends.
What a blessing! I was looking around closely during Sacrament Meeting today, realizing that I wouldn't have a chance to see everyone for at least six weeks, and it was an overwhelmingly sobering and emotional thought. Now, here most of those whom I identified as missing the most are gathered together AND wearing purple.
After the pictures, things are being handed to me so fast that I can barely hold them all. So many things, so much love. Tears start streaming down my face without invitation.
So many cards--most of them in purple envelopes! Food: clam chowder, cucumber sandwiches, chicken alfredo, homemade bread. Treats: chocolate chip cookies, ginger snaps, Maddie's specialty, buttery concoctions that she added food coloring to to make purple (what else?). Books and bath salts.
And so many hugs! If you ever want to be bathed in love, just leave it to the members of the Cedar Hills 4th Ward! I would never have dreamed up such an outpouring, but it was perfect--absolutely perfect. Thank you to all who participated. You touched my soul and reminded me, once again, that I am not alone in this battle.
I hope to post pictures soon from the gathering, but I just couldn't wait any longer.
Saturday, August 13, 2011
Friday, August 12, 2011
We have a tentative schedule for next week:
Wednesday - Meet with BMT for patient education and family session. (Do I really understand what I'm getting into?)
Thursday - Remove port and insert central line.
Friday - Admission and Day -7. (They count backwards from the first actual transplant day.)
Now that it's almost here, it's getting more intimidating and more real. I've started a list of things I want to get done before Friday. Whew! Better get cracking. Otherwise, those things will have to wait for about six weeks.
Wednesday - Meet with BMT for patient education and family session. (Do I really understand what I'm getting into?)
Thursday - Remove port and insert central line.
Friday - Admission and Day -7. (They count backwards from the first actual transplant day.)
Now that it's almost here, it's getting more intimidating and more real. I've started a list of things I want to get done before Friday. Whew! Better get cracking. Otherwise, those things will have to wait for about six weeks.
Tuesday, August 9, 2011
Tuesday, August 9, 2011
Heart cath day. Head out by 8:50 a.m. to make it to UVRMC by 9:30 a.m. I tell Dale of my prayer and request and this now feels like just another step in the process that won't delay the transplant.
Need to draw a CBC and access my port to do it. I don't understand why only certain, more highly trained personnel can access a port. It's actually easier than starting an IV because the port already has the vein encapsulated. No digging or guessing required.
Someone from the 7th floor--cancer ward--is nice to come down and we have access.
Lots of hurry up and wait when you're at a hospital and today is no different. I learn that I'm actually scheduled in the cath lab from 12-2. Wow! So I'm supposed to here 2.5 hours earlier so I can just hang out. And, to make everyone else feel more comfortable even though I won't need any sedation, I get to be fasting the entire time too. Okie dokie.
We get to start a little early--at 11:30. No, I don't want sedation. Dr. Carter agrees and tells me he'd never ask for sedation for this procedure either. But I'm already rethinking that decision. I can feel way more than I ever have before. It's definitely ouchy and my blood pressure clearly shows my stress. Darn!
Plus, my lungs seems to start reacting to the contrast liquid. Suddenly, I'm wheezing and my O2 level drops. IV medications and I'm awarded my very own nasal cannula for oxygen. Things look better until it's time to pull everything out and close.
It seems there's a nerve that runs along the artery we accessed, and the tech admits they must have nicked it because there are tears spontaneously running out of my eyes. This hurts! But there's no offer of sedation now. We're too close to the end, so grimace and bear it, Trish. This is a rare occurrence that just had to happen today. And my lungs aren't fully cooperating either. It's getting harder to breathe and the table starts violently spinning even though I'm laying perfectly flat. I don't like this. We're finally done after 15 minutes of strong, direct pressure right where it hurts and the pressure is causing even more pain.
The good news though. My aortic valve looks great--just slightly under normal. No heart valve transplant necessary. Dale looks at me and says "Your prayers were answered." I'm in pain and struggling to breathe, but he's absolutely right. I immediately burst into tears at the knowledge of a loving Heavenly Father answering my timid request.
Time to lay still in my room for three more hours while the site has a chance to form a strong clot that won't hemorrhage later. Yay! I can finally get up and move around.
The plan is to discharge me between 5 and 6 p.m. and the papers are already drawn up when my lungs decide they won't cooperate. Crud! The doctor wants me to stay the night? Really? When we didn't do any kind of heart interventions but take some measurements? I talk him into letting me go home and start getting dressed. Just putting on two articles of clothing, with Dale doing most of the work, drops my O2 level and makes me feel extremely dizzy. What's the right decision to make?
Time to involve Heavenly Father again. See, I can be taught :-) What's the right decision to make? I want to go home. We have a visitors coming over at 7:00 that we've never had before, and I want to participate in that visit. I reveal all of my reasons for wanting to go home and then realize, abruptly, that my reasons aren't good enough. There's more of risk than it's worth if I go home early.
What's even more miraculous is that I'm okay with staying. I can easily trade no valve transplant for one night in the hospital. Maybe this is a trial run for the four weeks of hospitalization that are coming.
I don't even need Dale to stay. I'm perfectly okay and want him to leave so he can meet our visitors. He gets to go home, and I get to catch up with these entries. It's all okay and someone much wiser than me is fully in charge. Thank you!
And, hopefully, we'll still get to proceed with the bone marrow transplant sometime next week. That's what I'm praying for now.
Need to draw a CBC and access my port to do it. I don't understand why only certain, more highly trained personnel can access a port. It's actually easier than starting an IV because the port already has the vein encapsulated. No digging or guessing required.
Someone from the 7th floor--cancer ward--is nice to come down and we have access.
Lots of hurry up and wait when you're at a hospital and today is no different. I learn that I'm actually scheduled in the cath lab from 12-2. Wow! So I'm supposed to here 2.5 hours earlier so I can just hang out. And, to make everyone else feel more comfortable even though I won't need any sedation, I get to be fasting the entire time too. Okie dokie.
We get to start a little early--at 11:30. No, I don't want sedation. Dr. Carter agrees and tells me he'd never ask for sedation for this procedure either. But I'm already rethinking that decision. I can feel way more than I ever have before. It's definitely ouchy and my blood pressure clearly shows my stress. Darn!
Plus, my lungs seems to start reacting to the contrast liquid. Suddenly, I'm wheezing and my O2 level drops. IV medications and I'm awarded my very own nasal cannula for oxygen. Things look better until it's time to pull everything out and close.
It seems there's a nerve that runs along the artery we accessed, and the tech admits they must have nicked it because there are tears spontaneously running out of my eyes. This hurts! But there's no offer of sedation now. We're too close to the end, so grimace and bear it, Trish. This is a rare occurrence that just had to happen today. And my lungs aren't fully cooperating either. It's getting harder to breathe and the table starts violently spinning even though I'm laying perfectly flat. I don't like this. We're finally done after 15 minutes of strong, direct pressure right where it hurts and the pressure is causing even more pain.
The good news though. My aortic valve looks great--just slightly under normal. No heart valve transplant necessary. Dale looks at me and says "Your prayers were answered." I'm in pain and struggling to breathe, but he's absolutely right. I immediately burst into tears at the knowledge of a loving Heavenly Father answering my timid request.
Time to lay still in my room for three more hours while the site has a chance to form a strong clot that won't hemorrhage later. Yay! I can finally get up and move around.
The plan is to discharge me between 5 and 6 p.m. and the papers are already drawn up when my lungs decide they won't cooperate. Crud! The doctor wants me to stay the night? Really? When we didn't do any kind of heart interventions but take some measurements? I talk him into letting me go home and start getting dressed. Just putting on two articles of clothing, with Dale doing most of the work, drops my O2 level and makes me feel extremely dizzy. What's the right decision to make?
Time to involve Heavenly Father again. See, I can be taught :-) What's the right decision to make? I want to go home. We have a visitors coming over at 7:00 that we've never had before, and I want to participate in that visit. I reveal all of my reasons for wanting to go home and then realize, abruptly, that my reasons aren't good enough. There's more of risk than it's worth if I go home early.
What's even more miraculous is that I'm okay with staying. I can easily trade no valve transplant for one night in the hospital. Maybe this is a trial run for the four weeks of hospitalization that are coming.
I don't even need Dale to stay. I'm perfectly okay and want him to leave so he can meet our visitors. He gets to go home, and I get to catch up with these entries. It's all okay and someone much wiser than me is fully in charge. Thank you!
And, hopefully, we'll still get to proceed with the bone marrow transplant sometime next week. That's what I'm praying for now.
Monday, August 8, 2011
One of the things Dale and I discussed on our ride to and from St. George is how conflicted I feel between trying to maintain some balance in my present state in life.
How do I juggle working when I don't feel my best and yet being productive, helping the kids accomplish what they need to, letting Dale know how much I appreciate his support and working to let him know how much I love him, serving others, and taking care of myself? It's a question that I know many people struggle with, but the ante seems greatly amped for me lately.
I sometimes identify with Peter very well. I know I have one of those addictive personalities. I would never drink alcohol because I'd probably be instantly addicted. I think I was a spirit in the pre-existence who thought, "Go ahead and send me to earth. I'll be so good. I'll do everything you ask, and I'll work so hard. Nothing will derail me." Remind you of anyone jumping into a stormy sea and then slowly sinking?
Dale is so good for me and my general impatience and almost over-zealousness. He is a great complement, and gently points out that maybe I've shortsighting one of the important areas of my life: my team at work. I am their manager and need to ensure that they have everything they need to succeed, whether I'm at work or not.
He's absolutely right. I am feeling more strength and energy as we get further from chemo, so I head to work for a full day today. It's such a great day. I get so much done and feel a natural high from being so productive. It's something I crave--to put in a good day's effort and accomplish high-quality work. Yay!
I also call Dr. Wendy's office to see if I can reschedule our appointment for tomorrow. Conflict solved! She doesn't even need to meet with me because the PET scan was so favorable. No more ICE chemo and no more appointments with her until after the bone marrow transplant.
How do I juggle working when I don't feel my best and yet being productive, helping the kids accomplish what they need to, letting Dale know how much I appreciate his support and working to let him know how much I love him, serving others, and taking care of myself? It's a question that I know many people struggle with, but the ante seems greatly amped for me lately.
I sometimes identify with Peter very well. I know I have one of those addictive personalities. I would never drink alcohol because I'd probably be instantly addicted. I think I was a spirit in the pre-existence who thought, "Go ahead and send me to earth. I'll be so good. I'll do everything you ask, and I'll work so hard. Nothing will derail me." Remind you of anyone jumping into a stormy sea and then slowly sinking?
Dale is so good for me and my general impatience and almost over-zealousness. He is a great complement, and gently points out that maybe I've shortsighting one of the important areas of my life: my team at work. I am their manager and need to ensure that they have everything they need to succeed, whether I'm at work or not.
He's absolutely right. I am feeling more strength and energy as we get further from chemo, so I head to work for a full day today. It's such a great day. I get so much done and feel a natural high from being so productive. It's something I crave--to put in a good day's effort and accomplish high-quality work. Yay!
I also call Dr. Wendy's office to see if I can reschedule our appointment for tomorrow. Conflict solved! She doesn't even need to meet with me because the PET scan was so favorable. No more ICE chemo and no more appointments with her until after the bone marrow transplant.
Sunday, August 7, 2011
Dale and I have a great visit in St. Gerorge, attend Fast and Testimony Meeting, and listen to the testimony of one dear sister whose family has been in our home and who recently lost her teenage son (age 17 and one of my two nephews' best friends).
Nolan laid down on the couch to watch a movie with his younger brother. When the movie was over, Austin couldn't wake him. He was gone just like that.
Thank you for the reminder of Heavenly Father's great plan and that we can still have joy and find peace even while experiencing almost unconceivable heartaches and losses. With my limited foresight, I wish I could prevent parents from ever having to bury one of their children. Good thing I'm not in charge!
Nolan laid down on the couch to watch a movie with his younger brother. When the movie was over, Austin couldn't wake him. He was gone just like that.
Thank you for the reminder of Heavenly Father's great plan and that we can still have joy and find peace even while experiencing almost unconceivable heartaches and losses. With my limited foresight, I wish I could prevent parents from ever having to bury one of their children. Good thing I'm not in charge!
Saturday, August 6, 2011
Head to the AF hospital at 8:00 a.m. for a CBC blood draw so they have time to send the results to LDS Hospital to see if I need a transfusion today.
Dale's driving, so I volunteer the two best places to park. We can either sneak through the north side of the ER to head to admitting and then down to the lab and almost straight out to the car. Or, we can walk through the front door to hit admitting first, then the lab and make a complete circle out to the car.
I start joking with Dale. You might have a serious medical problem if. . .
* You can accurately map out your local hospital, to scale, and know where each different department is located.
* You can accurately map more than one hospital.
* You know all of the shortcuts between the different departments at your local hospitals.
* You can read medical test result reports and understand what they mean.
* You are on a first-name basis with your doctor.
* You are on a first-name basis with more than one doctor.
* You have more than one doctor's phone number on speed dial.
* You've been given more than one doctor's personal cell phone number.
* You know your best vein to access for blood draws AND what size needle to suggest.
* Your personal medical bills will raise the premiums for your entire company next year.
Anyway, I'm probably slightly crazy for thinking these are so hilarious!
The test results are back by 9:30 this morning. While they are still low, they are trending up so no transfusions today.
Dale and I realize that this might be the last weekend we have for several months to escape together and get out of town, so, somewhat spontaneously, we arrange to surprise my sister and greatest-only-to-Dale-support-source with a quick visit to St. George.
Thanks to Amy agreeing to cover the organ tomorrow, we have lots of time to talk on the ride down. I almost have a small panic attack as I realize what a heart tranplant could entail. I've learned by now that "What if" questions are usually not a good path for me to head down. Got to stop this train of thought. What could we do instead?
Got it, Heavenly Father. Of course, let me involve you. Someone really wise lately counseled that we should pray for what we want and then ask for Heavenly Father's will to be done. (Thanks, Dan. That lesson has obviously stuck with me, and I'm not sure I would have been comfortable putting that plan in action before that lesson.) It's exactly what Christ did in the Garden of Gethsemane. I know that, but I've never felt quite at ease asking for my life to be made easier in some things. Comfort, peace, strength, courage--sure! I can ask for those. But removing trials or eliminating them somewhat--not so sure about that. Of course, Christ can ask. He's perfect. He would never ask for things His Father didn't agree with. I don't have that kind of confidence for my requests. But let me try it.
Heavenly Father, please, please heal my aortic valve--at least temporarily. I know thou can heal it. I know thou can postpone the heart valve surgery. I know thou loves me and wants only the best for me. I'm just not sure what that best is because my foresight is so miniscule compared to thine. I would love to be able to deal with one transplant at a time, so I can heal from cancer before dealing with the next challenge. I ask these things according to thy will and thy plan. And please bless me to have the courage and strength and peace to accept whatever that plan is.
I feel better even though I don't really know what's going to happen, but I decide to plant that small seed of faith and proceed as if the heart cath will prove that it was just a bad echo and my valve is fine. Help mine unbelief!
Dale's driving, so I volunteer the two best places to park. We can either sneak through the north side of the ER to head to admitting and then down to the lab and almost straight out to the car. Or, we can walk through the front door to hit admitting first, then the lab and make a complete circle out to the car.
I start joking with Dale. You might have a serious medical problem if. . .
* You can accurately map out your local hospital, to scale, and know where each different department is located.
* You can accurately map more than one hospital.
* You know all of the shortcuts between the different departments at your local hospitals.
* You can read medical test result reports and understand what they mean.
* You are on a first-name basis with your doctor.
* You are on a first-name basis with more than one doctor.
* You have more than one doctor's phone number on speed dial.
* You've been given more than one doctor's personal cell phone number.
* You know your best vein to access for blood draws AND what size needle to suggest.
* Your personal medical bills will raise the premiums for your entire company next year.
Anyway, I'm probably slightly crazy for thinking these are so hilarious!
The test results are back by 9:30 this morning. While they are still low, they are trending up so no transfusions today.
Dale and I realize that this might be the last weekend we have for several months to escape together and get out of town, so, somewhat spontaneously, we arrange to surprise my sister and greatest-only-to-Dale-support-source with a quick visit to St. George.
Thanks to Amy agreeing to cover the organ tomorrow, we have lots of time to talk on the ride down. I almost have a small panic attack as I realize what a heart tranplant could entail. I've learned by now that "What if" questions are usually not a good path for me to head down. Got to stop this train of thought. What could we do instead?
Got it, Heavenly Father. Of course, let me involve you. Someone really wise lately counseled that we should pray for what we want and then ask for Heavenly Father's will to be done. (Thanks, Dan. That lesson has obviously stuck with me, and I'm not sure I would have been comfortable putting that plan in action before that lesson.) It's exactly what Christ did in the Garden of Gethsemane. I know that, but I've never felt quite at ease asking for my life to be made easier in some things. Comfort, peace, strength, courage--sure! I can ask for those. But removing trials or eliminating them somewhat--not so sure about that. Of course, Christ can ask. He's perfect. He would never ask for things His Father didn't agree with. I don't have that kind of confidence for my requests. But let me try it.
Heavenly Father, please, please heal my aortic valve--at least temporarily. I know thou can heal it. I know thou can postpone the heart valve surgery. I know thou loves me and wants only the best for me. I'm just not sure what that best is because my foresight is so miniscule compared to thine. I would love to be able to deal with one transplant at a time, so I can heal from cancer before dealing with the next challenge. I ask these things according to thy will and thy plan. And please bless me to have the courage and strength and peace to accept whatever that plan is.
I feel better even though I don't really know what's going to happen, but I decide to plant that small seed of faith and proceed as if the heart cath will prove that it was just a bad echo and my valve is fine. Help mine unbelief!
Friday, August 5, 2011
Time to meet with Dr. Jerry, cardiologist, and review the results of some of yesterday's tests. He was so good to squeeze me into his already overbooked schedule. I left a message last night with BMT to say I managed to get an expedited appointment, and I need to get the results of the EKG and echocardiogram to take with me today, However, I haven't heard anything. So at 9:00 a.m. I call BMT to see how to get the results for my 10:00 appointment. Nothing like having an urgent deadline!
Still trying to get the bone marrow transplant scheduled for sometime next week.
We meet with Brad, the PA, first. He's not very encouraging.
We've been watching my aortic valve for about five years. It was damaged by the radiation I got 36 years ago and needs to be replaced when it measures less than .75. (That's a fun discussion to have. Do I want it replaced with a pig valve that requires more daily medications and has a higher risk of rejection or a mechanical one, which will make a funny audible sound if you're close to me?)
Measurement from the echocardiogram? .64. NO! My heart feels like it skips a beat. No pun intended. How do we fit a heart valve transplant in with a bone marrow transplant? Which has priority? If we need to strengthen the heart so it survives the bone marrow process, cancer isn't usually patient so what does that mean? If we proceed with the bone marrow, will that weaken my heart so much that I won't survive? I did not expect this at all. Shoot!
What do we do now? I volunteer that the technician really wasn't very good. She often couldn't find what she was looking for and I now have about six bruises from the amount of pressure she used in different positions to try and find the place. Is there any chance that it was just a bad scan?
Dr. Jerry comes in at this point to weigh in. He agrees with my possible explanation, so we need to do another type of test to try and get a more accurate number. Do I want a TTE (transesophageal echocardiogram)--a small video recording device shoved down my throat so they can get closer to the aorta? I've had one of those. All that gag reflex jumping in and a very sore throat afterwards? What's my other option? A heart catheterization. Oh, I've had 3-4 of those. Access the inguinal arteries and veins in my right leg (of course, because the scar tissue and healing incision from the biopsy is still in my left leg) and thread a wire up into the heart. That's the option I want. Plus, while they're already there, they can enter the lungs and get an accurate reading of my pulmonary hypertension, which Dr. Mike, pulmonologist, would love to review on Friday. He's been bugging me for another heart cath for the last year or so.
We have a plan. Now we just have to schedule it, which goes from bad (.64 reading) to worse. Dr. Jerry recently moved and is no longer a covered provider or has privileges at a covered hospital. Shoot again! He can recommend a former colleague to me, but it's definitely not what I want.
After several phone calls to my insurance and various hospitals around Utah and Salt Lake counties, I finally decide we'd better go with the covered provider and hospital, so our medical bills don't escalate.
I start praying at this point that we're able to get the cath scheduled soon--next week, if possible. Several more phone calls and Brad returns my call. Success! Dr. Carter can do it Tuesday morning at UVRMC in Provo if that works with my schedule. I'll make it work.
I'm supposed to meet with Dr. Wendy on Tuesday, but I think she's easier to reschedule than trying to get another heart cath appointment. I'll take Tuesday, with Dr. Carter, in the UVRMC heart lab. Do I need a weapon to finalize my choice (like the game Clue?). Oh, the weapons are scalpels and hemostats and wires. I win!
Still trying to get the bone marrow transplant scheduled for sometime next week.
We meet with Brad, the PA, first. He's not very encouraging.
We've been watching my aortic valve for about five years. It was damaged by the radiation I got 36 years ago and needs to be replaced when it measures less than .75. (That's a fun discussion to have. Do I want it replaced with a pig valve that requires more daily medications and has a higher risk of rejection or a mechanical one, which will make a funny audible sound if you're close to me?)
Measurement from the echocardiogram? .64. NO! My heart feels like it skips a beat. No pun intended. How do we fit a heart valve transplant in with a bone marrow transplant? Which has priority? If we need to strengthen the heart so it survives the bone marrow process, cancer isn't usually patient so what does that mean? If we proceed with the bone marrow, will that weaken my heart so much that I won't survive? I did not expect this at all. Shoot!
What do we do now? I volunteer that the technician really wasn't very good. She often couldn't find what she was looking for and I now have about six bruises from the amount of pressure she used in different positions to try and find the place. Is there any chance that it was just a bad scan?
Dr. Jerry comes in at this point to weigh in. He agrees with my possible explanation, so we need to do another type of test to try and get a more accurate number. Do I want a TTE (transesophageal echocardiogram)--a small video recording device shoved down my throat so they can get closer to the aorta? I've had one of those. All that gag reflex jumping in and a very sore throat afterwards? What's my other option? A heart catheterization. Oh, I've had 3-4 of those. Access the inguinal arteries and veins in my right leg (of course, because the scar tissue and healing incision from the biopsy is still in my left leg) and thread a wire up into the heart. That's the option I want. Plus, while they're already there, they can enter the lungs and get an accurate reading of my pulmonary hypertension, which Dr. Mike, pulmonologist, would love to review on Friday. He's been bugging me for another heart cath for the last year or so.
We have a plan. Now we just have to schedule it, which goes from bad (.64 reading) to worse. Dr. Jerry recently moved and is no longer a covered provider or has privileges at a covered hospital. Shoot again! He can recommend a former colleague to me, but it's definitely not what I want.
After several phone calls to my insurance and various hospitals around Utah and Salt Lake counties, I finally decide we'd better go with the covered provider and hospital, so our medical bills don't escalate.
I start praying at this point that we're able to get the cath scheduled soon--next week, if possible. Several more phone calls and Brad returns my call. Success! Dr. Carter can do it Tuesday morning at UVRMC in Provo if that works with my schedule. I'll make it work.
I'm supposed to meet with Dr. Wendy on Tuesday, but I think she's easier to reschedule than trying to get another heart cath appointment. I'll take Tuesday, with Dr. Carter, in the UVRMC heart lab. Do I need a weapon to finalize my choice (like the game Clue?). Oh, the weapons are scalpels and hemostats and wires. I win!
Friday, August 5, 2011
Thursday, August 4, 2011
Test day at LDS Hospital. Dale's schedule freed up so he can go with me. I'm glad, but I don't feel like I need him to.
Okay, find cardiology on the 7th floor for an echocardiogram and EKG. Easy stuff and nothing new there.
Down to the 6th floor and the pulmonary lab for breathing tests. How much can you blow out and how much can you suck in? Easy again.
Up to the 8th floor for lab work. Should be easy again. Sure! There are so many tubes to fill with blood (about 29) that the lab tech needs someone else to hand them to her. She's afraid my veins aren't going to hold out. We joke about her sucking out all my blood and then saving the last tube for the CBC to count blood cells.
At one point, I have her trying to give me information, the BMT coordinator talking to me about possibly speeding up the timing of the transplant, another tech putting a medical bracelet on me (to make labels for all those vials of blood), Dale trying to tell me what the plumber at our house is finding, a student nurse watching and trying to help, and 2-3 others popping in for various questions. How many people does it take to collect my blood? 5-7, depending on what point we're at in the process.
And we're not finished yet. They need a urine sample and a rectal swab(!) before they can let me go. Now that there's no dignity left in the world, I proceed to the 1st floor and radiology.
An easy chest x-ray later and Dale and I successfully navigate the long maze of temporary hospital corridors back to the makeshift hospital entrance (while they construct a new main entrance over the next 6-7 months). We almost make it to the valet station out in the driveway, when my cell phone rings.
"Trish? Are you still close to the hospital? We need you to come back to the 8th floor. You're platelet counts are dangerously low and we need to transfuse a unit." Oh joy!
We meander slowly back through the maze of corridors, up to the 8th floor, and spend another 1.5 hours waiting for yellow blood products to slowly drip through my port. But that's not quite enough because my red blood cells, hemoglobin, and hematocrit are also low. Not dangerously low and needing an immediate transfusion, but low enough that I need an order for another CBC at AF Hospital on Saturday morning. Then, I get to wait until the results are phoned in to LDS Hospital so they can decide if I need to head back to LDS on Saturday afternoon for another transfusion.
Whew! I'm tired. I'm even more tired now that I know how low my blood counts are. Can I just go home and sleep? Please? And I was thinking that Dale didn't need to come today.
Okay, find cardiology on the 7th floor for an echocardiogram and EKG. Easy stuff and nothing new there.
Down to the 6th floor and the pulmonary lab for breathing tests. How much can you blow out and how much can you suck in? Easy again.
Up to the 8th floor for lab work. Should be easy again. Sure! There are so many tubes to fill with blood (about 29) that the lab tech needs someone else to hand them to her. She's afraid my veins aren't going to hold out. We joke about her sucking out all my blood and then saving the last tube for the CBC to count blood cells.
At one point, I have her trying to give me information, the BMT coordinator talking to me about possibly speeding up the timing of the transplant, another tech putting a medical bracelet on me (to make labels for all those vials of blood), Dale trying to tell me what the plumber at our house is finding, a student nurse watching and trying to help, and 2-3 others popping in for various questions. How many people does it take to collect my blood? 5-7, depending on what point we're at in the process.
And we're not finished yet. They need a urine sample and a rectal swab(!) before they can let me go. Now that there's no dignity left in the world, I proceed to the 1st floor and radiology.
An easy chest x-ray later and Dale and I successfully navigate the long maze of temporary hospital corridors back to the makeshift hospital entrance (while they construct a new main entrance over the next 6-7 months). We almost make it to the valet station out in the driveway, when my cell phone rings.
"Trish? Are you still close to the hospital? We need you to come back to the 8th floor. You're platelet counts are dangerously low and we need to transfuse a unit." Oh joy!
We meander slowly back through the maze of corridors, up to the 8th floor, and spend another 1.5 hours waiting for yellow blood products to slowly drip through my port. But that's not quite enough because my red blood cells, hemoglobin, and hematocrit are also low. Not dangerously low and needing an immediate transfusion, but low enough that I need an order for another CBC at AF Hospital on Saturday morning. Then, I get to wait until the results are phoned in to LDS Hospital so they can decide if I need to head back to LDS on Saturday afternoon for another transfusion.
Whew! I'm tired. I'm even more tired now that I know how low my blood counts are. Can I just go home and sleep? Please? And I was thinking that Dale didn't need to come today.
Wednesay, August 3, 2011
It's so hard to breathe. I can take a few steps, very slowly, and feel the world caving in on me and blacking out around me.
Walking 2.5 blocks to the bus stop used to be fairly easy. Now, I have to stop about every ten steps and try to calm my heart and my lungs so I can keep going. I've already missed the bus once this week and had to wait 40 minutes until the next one came.
This feels like when I had clots in my lungs about three years ago, except that the feeling happened more gradually this time, over the course of the last week, instead of over two days.
Crud! I wonder what this means. Let's go to the doctor's office and see what my blood pressure and oxygen levels are like. O2: 84% and dropping, 83, 82, 80, 79. Okay, that's not good at all. I was hoping for at least 92%. Blood pressure: 183/103. Double crud! So my body isn't getting enough oxygen and my heart is working harder to try and compensate.
Dale, is there any point in putting off the inevitable--an ER visit? Anything else to try? Anything else to check? Drat! Is this a busy time for the ER? No. Would I rather wait until it's worse and have to come back at 1 or 3 a.m. tonight? No. Okay. Let's go.
I don't want the ER to spend a lot of time trying to rule out the universe when I'm only concerned with one, life-threatening thing, so I walk in prepared and armed.
Look! I'm having trouble breathing. The doctor's office just measured my O2 and it was 80 and dropping. My blood pressure was 183/103. I have a history of PEs, and I'd just like to ensure that I don't have them again.
"Follow me back to room 10 please. I'm Stephanie and will be organizing this little party for you today. Let me get the doctor."
He wants to know what my pertinent history is--Good thing he clarified that. We don't have three years for him to review my full medical history--and what brought me to this point. It still takes 15 mintues to recount the critical facts for the day, but he agrees that we ought to rule out PEs at least.
He offers to draw blood work, but realizes that Dr. Wendy is watching it pretty carefully. He also offers to do a cardiac workup because that's pretty normal when the lungs seem compromised. No thanks. Just rule out PEs please.
That CAT scan comes back clear. Hooray! No more 9-day hospital stays. We both figure that it's probably the chemo that's causing the dyspnea--especially since one of the drugs is know to cause lung toxicities and dizziness.
The best part of the whole visit and the part that makes it (almost) worthwhile? They were able to pull up the PET scan from yesterday and print the results for me. It didn't show any unknown lung issues. Most importantly, it also showed no more Hodgkins! There was some slight activity in the lymph nodes but so little it cannot be called cancerous activity.
Hooray! That means that we don't have to do any more ICE chemo and can proceed more quickly to the bone marrow transplant. Not that I'm so excited about getting to that point, but the quicker we're there, the quicker we can be on the road to recovery and, hopefully, cure!
Walking 2.5 blocks to the bus stop used to be fairly easy. Now, I have to stop about every ten steps and try to calm my heart and my lungs so I can keep going. I've already missed the bus once this week and had to wait 40 minutes until the next one came.
This feels like when I had clots in my lungs about three years ago, except that the feeling happened more gradually this time, over the course of the last week, instead of over two days.
Crud! I wonder what this means. Let's go to the doctor's office and see what my blood pressure and oxygen levels are like. O2: 84% and dropping, 83, 82, 80, 79. Okay, that's not good at all. I was hoping for at least 92%. Blood pressure: 183/103. Double crud! So my body isn't getting enough oxygen and my heart is working harder to try and compensate.
Dale, is there any point in putting off the inevitable--an ER visit? Anything else to try? Anything else to check? Drat! Is this a busy time for the ER? No. Would I rather wait until it's worse and have to come back at 1 or 3 a.m. tonight? No. Okay. Let's go.
I don't want the ER to spend a lot of time trying to rule out the universe when I'm only concerned with one, life-threatening thing, so I walk in prepared and armed.
Look! I'm having trouble breathing. The doctor's office just measured my O2 and it was 80 and dropping. My blood pressure was 183/103. I have a history of PEs, and I'd just like to ensure that I don't have them again.
"Follow me back to room 10 please. I'm Stephanie and will be organizing this little party for you today. Let me get the doctor."
He wants to know what my pertinent history is--Good thing he clarified that. We don't have three years for him to review my full medical history--and what brought me to this point. It still takes 15 mintues to recount the critical facts for the day, but he agrees that we ought to rule out PEs at least.
He offers to draw blood work, but realizes that Dr. Wendy is watching it pretty carefully. He also offers to do a cardiac workup because that's pretty normal when the lungs seem compromised. No thanks. Just rule out PEs please.
That CAT scan comes back clear. Hooray! No more 9-day hospital stays. We both figure that it's probably the chemo that's causing the dyspnea--especially since one of the drugs is know to cause lung toxicities and dizziness.
The best part of the whole visit and the part that makes it (almost) worthwhile? They were able to pull up the PET scan from yesterday and print the results for me. It didn't show any unknown lung issues. Most importantly, it also showed no more Hodgkins! There was some slight activity in the lymph nodes but so little it cannot be called cancerous activity.
Hooray! That means that we don't have to do any more ICE chemo and can proceed more quickly to the bone marrow transplant. Not that I'm so excited about getting to that point, but the quicker we're there, the quicker we can be on the road to recovery and, hopefully, cure!
Tuesday, August 2, 2011
Today's PET/CT scan was pretty unremarkable.
Get finger poked for fasting glucose level (96) and creatine (good). Wait for my port to be accessed, flushed, injected with radioactive sugar, flushed again, drink cranberry juice-like contrast, take PET scans, have port injected with more contrast, finish CT portion, flush port again and deaccess it.
The worst part for me is having to wait in a dark room for an hour while the radioactive isotope looks for any cancer cells, which are always hungry for sugar. I'm convinced you can literally drive yourself insane if you're alone with just your thoughts and let them roam rampantly and unbridled.
What will the scans show today? What if I don't lie as absolutely still as possible and give myself false readings on the scans? What if the scans show that the chemo isn't touching the lymph nodes? They still feel as large to me as they did at first. What if I need more chemo? What if I need several more rounds of chemo? What if the chemo doesn't work? What's the next step? What if we can never do the transplant? What would Dale do if I die?
OKAY. ENOUGH! Time to stop that train of thought immediately.
Where's your faith, Trish? Yes, you have no control over any of this--except to proceed with faith and a positive approach and learn and grow.
Bottom line: does it matter if I live on the earth a bit longer or die tomorrow as long as I know that Heavenly Father lives, that my Savior lives, that they love me, that they want the best for me, and that I want to follow them and become more like them? What else really matters or could possibly supercede that knowledge and desire? Certainly not silly old afflictions of the mortal body only--like cancer.
Just breathe, Trish. This too shall pass.
I ask to see the pictures from the scans and don't see any orange glowing orbs this time. I'm hoping that means good news and not the more probable--that I have no clue what I'm looking at or for. I give my professional and scientific findings to Dale. No orange glowing orbs = no more chemo.
We'll see :-)
Get finger poked for fasting glucose level (96) and creatine (good). Wait for my port to be accessed, flushed, injected with radioactive sugar, flushed again, drink cranberry juice-like contrast, take PET scans, have port injected with more contrast, finish CT portion, flush port again and deaccess it.
The worst part for me is having to wait in a dark room for an hour while the radioactive isotope looks for any cancer cells, which are always hungry for sugar. I'm convinced you can literally drive yourself insane if you're alone with just your thoughts and let them roam rampantly and unbridled.
What will the scans show today? What if I don't lie as absolutely still as possible and give myself false readings on the scans? What if the scans show that the chemo isn't touching the lymph nodes? They still feel as large to me as they did at first. What if I need more chemo? What if I need several more rounds of chemo? What if the chemo doesn't work? What's the next step? What if we can never do the transplant? What would Dale do if I die?
OKAY. ENOUGH! Time to stop that train of thought immediately.
Where's your faith, Trish? Yes, you have no control over any of this--except to proceed with faith and a positive approach and learn and grow.
Bottom line: does it matter if I live on the earth a bit longer or die tomorrow as long as I know that Heavenly Father lives, that my Savior lives, that they love me, that they want the best for me, and that I want to follow them and become more like them? What else really matters or could possibly supercede that knowledge and desire? Certainly not silly old afflictions of the mortal body only--like cancer.
Just breathe, Trish. This too shall pass.
I ask to see the pictures from the scans and don't see any orange glowing orbs this time. I'm hoping that means good news and not the more probable--that I have no clue what I'm looking at or for. I give my professional and scientific findings to Dale. No orange glowing orbs = no more chemo.
We'll see :-)
Sunday, July 31, 2011
Sunday, July 31, 2011
It's test week. To start it out, here's a question. What's 17,816? Any ideas? Give up yet?
The cost of one round of ICE chemo. Yikes! Thanks to health insurance, that's not even close to our portion though. Whew! It's easy to see how medical expenses can bankrupt families.
I've got another PET/CT scan on Tuesday (about $13,000) to see if the cancer is in remission or close to remission so we can proceed with the transplant. Then, Thursday is a whole bunch of preliminary tests for transplant: blood work, chest x-ray, pulmonary function tests, EKG, echocardiogram. Just your typical let's-spend-two-hours-in-the-hospital-being-poked-and-prodded-because-we're-bored plan :-)
Maybe I did a silly thing by wanting to document how generous our neighbors, friends, and family are. We keep writing things in red ink on our family calendar, but it's getting hard to read birthday and other celebrations on each day. I'm so touched. It's a great reminder that I'm not alone even if this particular trial is rather unique.
We had a wonderful dinner on Tuesday night, complete with homemade cookies for dessert, thanks to Kim and Kristin. On Wednesday, a hilarious fluffy purple unicorn from Diane with an equally giggle-producing card and a different card signed by lots of coworkers. On Thursday, lots of yummy ham and bean soup from Jen. Today, fruity slush from Jennifer. Wow!
The more we get away from chemo, the better I feel. Almost back to normal now. Just slightly more tired than usual, but it keeps getting better all the time. Now it's time for the weird sensation of feeling each heart beat in the center of my hip bones and spine. It's almost like a tiny zap of electricity. If I think about it, there's some pain associated with each beat; but I'm almost used to it by now so I usually don't think about it. Just another sign of modern advances, where the Neulasta injection is stimulating my bone marrow to produce more blood cells. I'm not sure if it applies to red blood cells and platelets as well as white blood cells. I'll have to check.
There's one part of a suture from my port that is now sticking almost straight out and likes to poke me--especially when I'm trying to sleep. Hopefully, I can have a radiologist or radiology nurse look at it Tuesday morning. I don't just want to tug on it. If it moves my port or somehow disrupts it, I'd hate to need to get it reinserted.
Very little to complain about and lots to be grateful for. Thanks for the heartfelt reminders to look for blessings while enduring trials, Nanette and Jared. And thank you for the very real, yet upbeat examples!
The cost of one round of ICE chemo. Yikes! Thanks to health insurance, that's not even close to our portion though. Whew! It's easy to see how medical expenses can bankrupt families.
I've got another PET/CT scan on Tuesday (about $13,000) to see if the cancer is in remission or close to remission so we can proceed with the transplant. Then, Thursday is a whole bunch of preliminary tests for transplant: blood work, chest x-ray, pulmonary function tests, EKG, echocardiogram. Just your typical let's-spend-two-hours-in-the-hospital-being-poked-and-prodded-because-we're-bored plan :-)
Maybe I did a silly thing by wanting to document how generous our neighbors, friends, and family are. We keep writing things in red ink on our family calendar, but it's getting hard to read birthday and other celebrations on each day. I'm so touched. It's a great reminder that I'm not alone even if this particular trial is rather unique.
We had a wonderful dinner on Tuesday night, complete with homemade cookies for dessert, thanks to Kim and Kristin. On Wednesday, a hilarious fluffy purple unicorn from Diane with an equally giggle-producing card and a different card signed by lots of coworkers. On Thursday, lots of yummy ham and bean soup from Jen. Today, fruity slush from Jennifer. Wow!
The more we get away from chemo, the better I feel. Almost back to normal now. Just slightly more tired than usual, but it keeps getting better all the time. Now it's time for the weird sensation of feeling each heart beat in the center of my hip bones and spine. It's almost like a tiny zap of electricity. If I think about it, there's some pain associated with each beat; but I'm almost used to it by now so I usually don't think about it. Just another sign of modern advances, where the Neulasta injection is stimulating my bone marrow to produce more blood cells. I'm not sure if it applies to red blood cells and platelets as well as white blood cells. I'll have to check.
There's one part of a suture from my port that is now sticking almost straight out and likes to poke me--especially when I'm trying to sleep. Hopefully, I can have a radiologist or radiology nurse look at it Tuesday morning. I don't just want to tug on it. If it moves my port or somehow disrupts it, I'd hate to need to get it reinserted.
Very little to complain about and lots to be grateful for. Thanks for the heartfelt reminders to look for blessings while enduring trials, Nanette and Jared. And thank you for the very real, yet upbeat examples!
Monday, July 25, 2011
Sunday, July 24, 2011
The good news for the day is that I did not plaster the organ with the contents of my stomach! Thank you, Amy! How's that for the goal of the day? Note to self: take the anti-nausea prescription for one more day than originally suggested.
I came up with a fun new game for Dale today. Go ahead. You can play also. Try to guess what food sounds good to eat that I might be able to keep down. I'll even spot you three guesses.
Fried dill pickles? How would you ever guess that? And why would you ever guess that? When I'm feeling like myself, fried pickles don't make it on the favorites list. Here's the game clincher though. . .
Even if you managed to guess the food, if you went to get it for me, by the time you got home with it, it would sound totally disgusting and trigger my gag reflex. Good thing it's Sunday so we didn't have to waste time, energy, or money on that one.
Is this my body's retribution for never going through pregnancy cravings? I think we need to invent a new way to pass time.
We did have a lovely visit with Jen and Klint. It's amazing how similar and yet differently our bodies react to seemingly opposite physical stresses and pain.
I came up with a fun new game for Dale today. Go ahead. You can play also. Try to guess what food sounds good to eat that I might be able to keep down. I'll even spot you three guesses.
Fried dill pickles? How would you ever guess that? And why would you ever guess that? When I'm feeling like myself, fried pickles don't make it on the favorites list. Here's the game clincher though. . .
Even if you managed to guess the food, if you went to get it for me, by the time you got home with it, it would sound totally disgusting and trigger my gag reflex. Good thing it's Sunday so we didn't have to waste time, energy, or money on that one.
Is this my body's retribution for never going through pregnancy cravings? I think we need to invent a new way to pass time.
We did have a lovely visit with Jen and Klint. It's amazing how similar and yet differently our bodies react to seemingly opposite physical stresses and pain.
Saturday, July 23, 2011
Saturday, July 23, 2011
Finally, life returns! After sleeping for about 21 of each of the past 24-hour periods, I have a glimpse of what it feels like to be alive today. I know the past week's worth of haze is not living and is not me. I'm just grateful that a semblance of me finally returned today.
I'll bet Dale is too. I can only imagine what things must feel like and look like from his side of all of this. I'm sure that a mostly comatose wife wasn't exactly what he thought he was getting into.
I'm learning what foods usually pass the stomach test. I have to remember this strange list. I have a feeling I'll need it even more after I'm admitted for the transplant: potatoes with onions, fruit juices or popsicles, spaghetti sauce, and white bread without any extra seeds or large grains in it. And you can live of from about three bites of any of those foods for at least 3-4 days.
More lifesavers or reminders that life continues: a freezer meal from Goddards, a gorgeous purple card from Jeri, and homemade white bread from Tina. My brain is so confused lately, about an hour after the bread was delivered, I called Dale to ask him to bring home a loaf of white bread. It's the only thing that sounded promising to try and keep down. Fortunately, we already had some and I didn't even have to wait for him to get home before I could try a small piece.
I'll bet Dale is too. I can only imagine what things must feel like and look like from his side of all of this. I'm sure that a mostly comatose wife wasn't exactly what he thought he was getting into.
I'm learning what foods usually pass the stomach test. I have to remember this strange list. I have a feeling I'll need it even more after I'm admitted for the transplant: potatoes with onions, fruit juices or popsicles, spaghetti sauce, and white bread without any extra seeds or large grains in it. And you can live of from about three bites of any of those foods for at least 3-4 days.
More lifesavers or reminders that life continues: a freezer meal from Goddards, a gorgeous purple card from Jeri, and homemade white bread from Tina. My brain is so confused lately, about an hour after the bread was delivered, I called Dale to ask him to bring home a loaf of white bread. It's the only thing that sounded promising to try and keep down. Fortunately, we already had some and I didn't even have to wait for him to get home before I could try a small piece.
Tuesday, July 19, 2011
Tuesday, July 19, 2011
Another set of chemo days.
It started yesterday with Etoposide--about 1.5 hours worth dripping through my port. I don't exactly know what that stuff is, but it wipes me out. About an hour after we got home, I crashed--hard! Took a six-hour nap, from about 2:30-8:30 p.m. It's been three weeks since the last treatment. Almost enough to forgot that weird, metallic taste in my mouth and my stomach constantly flip flopping and threatening to explode. Very strange to feel that you're body is battling against you.
Today is the long day. Start with the anti-nausea, Aloxi. More Etoposide. Then Carboplatin. About a three and half-hour process from 11-2:30. And my favorite part? A 24-hour pump loaded with Ifosamide and Mensa to take home. I can't get away from this stuff!
Tomorrow is a fairly quick day. More Aloxi, more Etoposide, a liter of saline to help wash everything though, and another stinging Neulasta injection to stimulate my marrow to produce more blood cells and counteract the chemo. Should take about one and half to two hours total.
Breathtaking sunset today with lots of purple in it. Can you imagine what it will be like when Christ comes again? I don't know how soon it will happen after He comes--maybe instantly?--but no disease, no cancer, no diabetes, no Alzheimers or illnesses of any kind? That would be so cool to be healed. One day chemo and cancer, and the next day cured! Personally, I don't think I'll be on the earth when it happens; I think the world isn't wicked enough yet--YIKES! But it is a great thing to think about.
It started yesterday with Etoposide--about 1.5 hours worth dripping through my port. I don't exactly know what that stuff is, but it wipes me out. About an hour after we got home, I crashed--hard! Took a six-hour nap, from about 2:30-8:30 p.m. It's been three weeks since the last treatment. Almost enough to forgot that weird, metallic taste in my mouth and my stomach constantly flip flopping and threatening to explode. Very strange to feel that you're body is battling against you.
Today is the long day. Start with the anti-nausea, Aloxi. More Etoposide. Then Carboplatin. About a three and half-hour process from 11-2:30. And my favorite part? A 24-hour pump loaded with Ifosamide and Mensa to take home. I can't get away from this stuff!
Tomorrow is a fairly quick day. More Aloxi, more Etoposide, a liter of saline to help wash everything though, and another stinging Neulasta injection to stimulate my marrow to produce more blood cells and counteract the chemo. Should take about one and half to two hours total.
Breathtaking sunset today with lots of purple in it. Can you imagine what it will be like when Christ comes again? I don't know how soon it will happen after He comes--maybe instantly?--but no disease, no cancer, no diabetes, no Alzheimers or illnesses of any kind? That would be so cool to be healed. One day chemo and cancer, and the next day cured! Personally, I don't think I'll be on the earth when it happens; I think the world isn't wicked enough yet--YIKES! But it is a great thing to think about.
Sunday, July 17, 2011
Sunday, July 17, 2011
Time to teach Relief Society--forever families and eternal marriage. Subjects that provided much comfort over the years.
A thought that just occurred to me yesterday while finalizing a discussion plan: I'll have another brother-in-law and sister-in-law when Thad and Tavia are married in the next life. Those will be amazing events!
Reading my patriarchal blessing, I'm amazed to see how many times I'm reminded that Christ will be at my side to comfort, guide, protect, and bless me through all my walks of life. I know that includes my cancer fight now.
I'm so grateful that, if I have to beat this thing twice in three years, that we waited until I have an eternal companion to help me through the fights.
Speaking of battles, you know my favorite color is purple, right? It used to be equally red and purple. However, when I learned that violet is the official color of Hodgkins lymphoma, I quickly adopted all shades of purple as MY color. Hence, purple war!
But, wait a minute! If this is a purple war, doesn't that mean I'm against purple? Such a thing cannot be. Oh, I think I've figured it out, the right perspective. It's like pink for breast cancer. I think it's the law of occupancy--that two things can't occupy the same space. If you plaster pink all over, wherever that pink is, breast cancer can't be.
If I plaster purple all over myself (glasses, shoes, accessories, clothes, etc.) and my environment (water bottle, planner, purse, and pens), wherever that purple is, Hodgkins lymphoma can't be. I'd better start seeing a lot of purple, people!. . .lol
Here's another law to contemplate--the transitive property of equality in math. You know the one. If a = b and b = c, then a = c. If I'm sealed to Dale and he's sealed to his kids, then, hopefully, I'm [virtually] sealed to his kids as well. I don't know for sure, but I'm certainly hoping!
A thought that just occurred to me yesterday while finalizing a discussion plan: I'll have another brother-in-law and sister-in-law when Thad and Tavia are married in the next life. Those will be amazing events!
Reading my patriarchal blessing, I'm amazed to see how many times I'm reminded that Christ will be at my side to comfort, guide, protect, and bless me through all my walks of life. I know that includes my cancer fight now.
I'm so grateful that, if I have to beat this thing twice in three years, that we waited until I have an eternal companion to help me through the fights.
Speaking of battles, you know my favorite color is purple, right? It used to be equally red and purple. However, when I learned that violet is the official color of Hodgkins lymphoma, I quickly adopted all shades of purple as MY color. Hence, purple war!
But, wait a minute! If this is a purple war, doesn't that mean I'm against purple? Such a thing cannot be. Oh, I think I've figured it out, the right perspective. It's like pink for breast cancer. I think it's the law of occupancy--that two things can't occupy the same space. If you plaster pink all over, wherever that pink is, breast cancer can't be.
If I plaster purple all over myself (glasses, shoes, accessories, clothes, etc.) and my environment (water bottle, planner, purse, and pens), wherever that purple is, Hodgkins lymphoma can't be. I'd better start seeing a lot of purple, people!. . .lol
Here's another law to contemplate--the transitive property of equality in math. You know the one. If a = b and b = c, then a = c. If I'm sealed to Dale and he's sealed to his kids, then, hopefully, I'm [virtually] sealed to his kids as well. I don't know for sure, but I'm certainly hoping!
Saturday, July 16, 2011
You gotta live and take advantage of fun moments in life, right? Enough talk. I want some action.
In honor of our 8th anniversay tomorrow, Dale and I crunch ourselves into two different Smart cars. We first saw them in Germany about five years ago. They looked so funny on the Autobahn--like you could reach out and tap them and they'd fall on their sides, dead. Hilarious!
Kind of a bumpy, rough ride but a surprising amount of room lengthwise. And the seats are high, so I'm almost falling out of my seat to reach the ground, like a truck.
A visit to the temple and some sushi afterward. I think we spent a total of two hours at home. Now that's our definition of living.
In honor of our 8th anniversay tomorrow, Dale and I crunch ourselves into two different Smart cars. We first saw them in Germany about five years ago. They looked so funny on the Autobahn--like you could reach out and tap them and they'd fall on their sides, dead. Hilarious!
Kind of a bumpy, rough ride but a surprising amount of room lengthwise. And the seats are high, so I'm almost falling out of my seat to reach the ground, like a truck.
A visit to the temple and some sushi afterward. I think we spent a total of two hours at home. Now that's our definition of living.
Friday, July 15, 2011
Tavia's funeral in Tooele. Thankfully, we worked it out so all of the kids can attend. Yay, because Cameron, Skyler, Jordan, and Travis are the only four pallbearers (nephews that are in attendance that are old enough to help). Thanks guys! You missed part of your mom's family reunion to be here. If I had the choice between a family reunion and a funeral, I think the family reunion would win every time. I appreciate the sacrifice. I wanted you here because Tavia lived with us for eight months. Even though she's your aunt, she's more like your younger sister in some ways.
I make it through okay--even manage to say a few words. Thank you, Tavia, for your example, Even though you had a broken body, you found great joy and love in this life. I take great comfort and strength from you.
Until we meet again, dear sister, and I have the privilege of hearing your voice and getting to know your full spirit. You will be my teacher then.
I make it through okay--even manage to say a few words. Thank you, Tavia, for your example, Even though you had a broken body, you found great joy and love in this life. I take great comfort and strength from you.
Until we meet again, dear sister, and I have the privilege of hearing your voice and getting to know your full spirit. You will be my teacher then.
Thursday, July 14, 2011
What a wonderful way to serve and what thoughfulness! Jennifer sent some coupons--hand colored, in purple, of course!--home with Dale. A meal, a dessert, a trip to a medical appointment, a redbox rental (and return!), phone calls, visits at home. I've got to remember this idea for the future. It's perfect and lets me decide when to redeem each.
I made it to the BMT clinic with hair, and now it's time to shave it off. Handfuls fall out when I simply run my fingers through it. Sayonora! Dale's graciously agreed to help and even agreed to have fun with it. Last time I said goodbye, I was too anxious, which made Miriam nervous, so this time I'm determined to enjoy the process.
Snap a before shot, then out on the back deck we go because neither of us wants to deal with the mess inside. A minute later, one side of my
head feels a lot cooler. Time for another picture. Two minutes later, the other side is cooler also. Another couple swipes and pictures to match. It's done.
Connie comes by and suggests that I wear brain squeezers, complete with flowers. Now why didn't I think of that? I wonder if any are big enough. Thanks for the giggle :-)
I'm relieved. Time to put away the hair products and implements for roughly another year and start saving a bunch of time getting ready every morning.
Dale sweeps up most of the pile, but lets the air clean off the rest.
It's liberating.
I made it to the BMT clinic with hair, and now it's time to shave it off. Handfuls fall out when I simply run my fingers through it. Sayonora! Dale's graciously agreed to help and even agreed to have fun with it. Last time I said goodbye, I was too anxious, which made Miriam nervous, so this time I'm determined to enjoy the process.
Snap a before shot, then out on the back deck we go because neither of us wants to deal with the mess inside. A minute later, one side of my
head feels a lot cooler. Time for another picture. Two minutes later, the other side is cooler also. Another couple swipes and pictures to match. It's done.Connie comes by and suggests that I wear brain squeezers, complete with flowers. Now why didn't I think of that? I wonder if any are big enough. Thanks for the giggle :-)
I'm relieved. Time to put away the hair products and implements for roughly another year and start saving a bunch of time getting ready every morning.
Dale sweeps up most of the pile, but lets the air clean off the rest.It's liberating.
Wednesday, July 13, 2011
Wednesday, July 13, 2011
And you were so scared! I told you and told you that you had nothing to be afraid of, but you wouldn't listen to me.
It's THAT day, that dreaded day--a 4-hour consult with the BMT team.
Dale picks me up from work, and I walk very slowly towards the van. Standing a few feet from the passenger side, I yell through the open window. So, if I walk as slowly as I possibly can, does that mean I'll never get to LDS Hospital, and we don't have to go? He's not buying it. But I DON'T WANNA. Does acting like a 3-year old help? Probably not, but I do feel better after having expressed those childish fears.
Wait for valet services to park the van, walk slowly inside, find the elevators, then make our way to the top floor and through the maze of hallways and corridors to the BMT outpatient clinic. There are three other patients in the waiting room--all with bald heads. Was expecting that.
One older gentlemen is complaining loudly. "Stupid transplant process was the worst thing I've ever done. About killed me, and I kept praying that [God] would take me." Thank you, ever so much, for spreading such optimism right before we talk about my own battle. Isn't there a filter on what you can say in front of new patients? La, la, la, I'm not listening.
Yay! No more grouchy pessimists as we head for an exam room. Char is a radiant, upbeat PA. She's carting a 5" binder that's bursting at the seams. "Is that all for Trisha?" Dale asks. "Yes. I haven't read all of it; but I am familiar with the important parts. You made it in too. There's mention of your knee surgery."
After a detailed review of everything that's happened in the last 2.5 years, we do a quick neurological exam.
Hurry up and wait for the next part. I'm so anxious about what we're going to learn, I can't sit still. Maybe there's something distracting to read in here. A quick glance reveals an old National Geographic, Golf Digest, and four periodicals related to cancer. Not!
We're finally ushered through back hallways and mysterious doors to the large conference room. Because of some emergent happenings, the director can't meet with us today and neither can Rachael--our friendly coordinator from 2.5 years ago. Instead, we get to meet with Dr. Mitchell, a different coordinator, Ladee, and a coordinator in training.
Oh good. I like them all--very personable, funny, and warm. So lay on the bad news guys. What's the plan?
Another round of chemo next week, then a follow up PET scan. BMTs work best if I'm almost in remission so we need to see good responses from the chemo. If it's not as good as we're hoping for, another round of ICE chemo might be necessary.
Specific prayer of the day: That my body responds well to the chemo, doesn't need another round, and the bone marrow transplant can proceed without delays.
Need to meet with my cardiologist and pulmonologist before the transplant. We'll schedule some pulmonary function tests at LDS so I can take them to Dr. Mike for comparison with former results.
If everything looks good at that point, we'll meet with the BMT team once again just before admission. Here it comes!
Plan on being admitted for four weeks. Could take only three, but it's better to be prepared.
First day, we'll remove my current port and insert a triple lumen central line.
Immediately I remember the Frankenstein-ish triple lumen IJ catheter from the stem cell collection process. This could be a deal breaker. I cannot deal with that thing in my neck for 4-6 weeks. I could barely handle it for five days!
"No, no. This will be much like your port but have three access points so that medications don't mix. Not in your neck, in your chest." One hurdle down.
Then, six days of BEAM chemo. I can get much stronger doses of chemo as a transplant recipient because they don't have to be concerned about destroying my bone marrow. They're going to rebuild that with the transplant. It's intense therapy that will zap my strength, but they'll monitor me closely during these T-6 days of counting down.
One day of rest, then it's day zero and probably two days of transplanting my stem cells in a blood transfusion-like process.
It takes 2-3 weeks before the cells start fully grafting in, so this is a critical stage where I'm monitored very, very closely. I'll have no white blood cells and very few platelets and red blood cells, so regular blood transfusions are very common.
I'll be feeling stronger as my cells are reproducing and the stem cells are grafting in and can prepare to be discharged to outpatient care for two more weeks. If there are no hiccups, I can gradually return to work and regular daily activities at that time.
It takes a year for a body to fully recover, but there's usually a 50% chance for cure. They're estimating my own personal rate is around 70% due to how responsive my body has been to chemo and how well it tolerates it. I'm slightly disappointed. I like Hodgkins's 97% cure rate, but 70% is probably worth the risk.
This is a high-risk procedure and my risks are higher with everything my body's been through. Oh no! I don't want to hear this next mortality number, but Dr. Mitchell plows boldly ahead. "We're guessing your personal risk is about. . ."
No, I don't want to hear this. I've been praying that Dale and I would know if we're supposed to proceed. We know we always have a choice. After all of the horror stories we've heard about transplants, maybe it's time to roll the dice and take our chances on the chemo curing me. My entire life, I've been counseled countless times in blessings to always heed and follow the advice of my doctors. However, I know that the Spirit trumps everything and everyone.
If she tells me my risk of death is above 50%, I'm not sure I'm going through with this.
"5%." Five percent chance of dying? That's all? No problem! Besides, if Heavenly Father wants to call me home, how would I stop Him and why would I want to? I can live with a 5% death risk.
Okay, so what about the horror stories?
Being in strict isolation for up to six months? "Just while you're hospitalized and for the two weeks after. When you're in the hospital, anyone can visit you at any time, as long as they're not sick."
Attending church? "Yup, that's fine as long as you wear a mask to protect yourself from unseen germs and infections."
Eating raw fruits and vegetables? "No problem. Just wash everything very well and no grapes. They mold from the inside out so you can't tell if you're eating germs until you've already taken a bit. And avoid public salad bars."
Are you kidding me? That's it? I can do this. I know I can do this. It doesn't even seem that hard now. What was I so terrified about?
Dale sums it up perfectly as we walk up, "Well, I definitely feel better coming out than I did going in."
Whew!
It's THAT day, that dreaded day--a 4-hour consult with the BMT team.
Dale picks me up from work, and I walk very slowly towards the van. Standing a few feet from the passenger side, I yell through the open window. So, if I walk as slowly as I possibly can, does that mean I'll never get to LDS Hospital, and we don't have to go? He's not buying it. But I DON'T WANNA. Does acting like a 3-year old help? Probably not, but I do feel better after having expressed those childish fears.
Wait for valet services to park the van, walk slowly inside, find the elevators, then make our way to the top floor and through the maze of hallways and corridors to the BMT outpatient clinic. There are three other patients in the waiting room--all with bald heads. Was expecting that.
One older gentlemen is complaining loudly. "Stupid transplant process was the worst thing I've ever done. About killed me, and I kept praying that [God] would take me." Thank you, ever so much, for spreading such optimism right before we talk about my own battle. Isn't there a filter on what you can say in front of new patients? La, la, la, I'm not listening.
Yay! No more grouchy pessimists as we head for an exam room. Char is a radiant, upbeat PA. She's carting a 5" binder that's bursting at the seams. "Is that all for Trisha?" Dale asks. "Yes. I haven't read all of it; but I am familiar with the important parts. You made it in too. There's mention of your knee surgery."
After a detailed review of everything that's happened in the last 2.5 years, we do a quick neurological exam.
Hurry up and wait for the next part. I'm so anxious about what we're going to learn, I can't sit still. Maybe there's something distracting to read in here. A quick glance reveals an old National Geographic, Golf Digest, and four periodicals related to cancer. Not!
We're finally ushered through back hallways and mysterious doors to the large conference room. Because of some emergent happenings, the director can't meet with us today and neither can Rachael--our friendly coordinator from 2.5 years ago. Instead, we get to meet with Dr. Mitchell, a different coordinator, Ladee, and a coordinator in training.
Oh good. I like them all--very personable, funny, and warm. So lay on the bad news guys. What's the plan?
Another round of chemo next week, then a follow up PET scan. BMTs work best if I'm almost in remission so we need to see good responses from the chemo. If it's not as good as we're hoping for, another round of ICE chemo might be necessary.
Specific prayer of the day: That my body responds well to the chemo, doesn't need another round, and the bone marrow transplant can proceed without delays.
Need to meet with my cardiologist and pulmonologist before the transplant. We'll schedule some pulmonary function tests at LDS so I can take them to Dr. Mike for comparison with former results.
If everything looks good at that point, we'll meet with the BMT team once again just before admission. Here it comes!
Plan on being admitted for four weeks. Could take only three, but it's better to be prepared.
First day, we'll remove my current port and insert a triple lumen central line.
Immediately I remember the Frankenstein-ish triple lumen IJ catheter from the stem cell collection process. This could be a deal breaker. I cannot deal with that thing in my neck for 4-6 weeks. I could barely handle it for five days!
"No, no. This will be much like your port but have three access points so that medications don't mix. Not in your neck, in your chest." One hurdle down.
Then, six days of BEAM chemo. I can get much stronger doses of chemo as a transplant recipient because they don't have to be concerned about destroying my bone marrow. They're going to rebuild that with the transplant. It's intense therapy that will zap my strength, but they'll monitor me closely during these T-6 days of counting down.
One day of rest, then it's day zero and probably two days of transplanting my stem cells in a blood transfusion-like process.
It takes 2-3 weeks before the cells start fully grafting in, so this is a critical stage where I'm monitored very, very closely. I'll have no white blood cells and very few platelets and red blood cells, so regular blood transfusions are very common.
I'll be feeling stronger as my cells are reproducing and the stem cells are grafting in and can prepare to be discharged to outpatient care for two more weeks. If there are no hiccups, I can gradually return to work and regular daily activities at that time.
It takes a year for a body to fully recover, but there's usually a 50% chance for cure. They're estimating my own personal rate is around 70% due to how responsive my body has been to chemo and how well it tolerates it. I'm slightly disappointed. I like Hodgkins's 97% cure rate, but 70% is probably worth the risk.
This is a high-risk procedure and my risks are higher with everything my body's been through. Oh no! I don't want to hear this next mortality number, but Dr. Mitchell plows boldly ahead. "We're guessing your personal risk is about. . ."
No, I don't want to hear this. I've been praying that Dale and I would know if we're supposed to proceed. We know we always have a choice. After all of the horror stories we've heard about transplants, maybe it's time to roll the dice and take our chances on the chemo curing me. My entire life, I've been counseled countless times in blessings to always heed and follow the advice of my doctors. However, I know that the Spirit trumps everything and everyone.
If she tells me my risk of death is above 50%, I'm not sure I'm going through with this.
"5%." Five percent chance of dying? That's all? No problem! Besides, if Heavenly Father wants to call me home, how would I stop Him and why would I want to? I can live with a 5% death risk.
Okay, so what about the horror stories?
Being in strict isolation for up to six months? "Just while you're hospitalized and for the two weeks after. When you're in the hospital, anyone can visit you at any time, as long as they're not sick."
Attending church? "Yup, that's fine as long as you wear a mask to protect yourself from unseen germs and infections."
Eating raw fruits and vegetables? "No problem. Just wash everything very well and no grapes. They mold from the inside out so you can't tell if you're eating germs until you've already taken a bit. And avoid public salad bars."
Are you kidding me? That's it? I can do this. I know I can do this. It doesn't even seem that hard now. What was I so terrified about?
Dale sums it up perfectly as we walk up, "Well, I definitely feel better coming out than I did going in."
Whew!
Tuesday, July 12, 2011
I want to make it through our appointment tomorrow with the BMT team with hair. Just one visit? I met with them lots 2.5 years ago without hair and there are more visits slated for the future.
I avoid touching my hair at all costs and still have to brush my clothes off almost constantly.
I felt like a meth addict when my skin was so itchy before diagnosis. Once again, I'm an out-of-control addict who constantly feels something brushing against my neck and chest and is brushing (almost) invisible strands away.
Think of how much time and energy--and hair product!--I'll save when I'm bald. It quite freeing.
Brayden is at our door tonight with a frozen chicken casserole meal and still warm AMAZING chocolate chip cookies.
Walking on the treadmill for 30 minutes a day might not be enough!
I avoid touching my hair at all costs and still have to brush my clothes off almost constantly.
I felt like a meth addict when my skin was so itchy before diagnosis. Once again, I'm an out-of-control addict who constantly feels something brushing against my neck and chest and is brushing (almost) invisible strands away.
Think of how much time and energy--and hair product!--I'll save when I'm bald. It quite freeing.
Brayden is at our door tonight with a frozen chicken casserole meal and still warm AMAZING chocolate chip cookies.
Walking on the treadmill for 30 minutes a day might not be enough!
Sunday, July 10, 2011
Sunday, July 10, 2011
I spray my hair with a water bottle. I won't wash it again because I know what's coming. I wonder at what point I'll give up. Every hand comes away with about 20 strands now.
Shoot! I shouldn't have left the blog at the point I did last night. Everything's dark in my blog world right now, but I'm feeling great and doing well. There's a time disconnect that people might not realize. There's the bishop. He's greatly concerned. I try to assure him that things are much better now.
Wow! Check out the lyrics of today's Sacrament Hymn, #169. It's one of my favorites. Was written by L. Tom Perry's son and a former stake president of mine.
And silently we pray.
For courage to accept thy will.
To listen and obey.
We love thee Lord.
Our hearts are full.
We'll walk thy chosen way.
I'm amazed I can see the notes through my tears.
Dale's speaking today. The subject is Family History. My thoughts turn to Tavia.
I wonder how her journal entries would read if she were allowed to go back and recreate them. Oooh, another interesting thought. Was she called home to help me through the BMT ordeal? The thought comforts me, but she probably has a much grander work in store. I wonder what she learned about courage and faith while on the earth.
Dan is back in Sunday School. We're in the last days of Christ's mortal life. I'm struck with another thought. Christ knows as soon as he dies that there is nothing His Father can ask that He isn't willing to do. What strength! What confidence! That's what I'm working towards--full submission with complete faith.
When Dan draws attention to me, I share my thought with the class. Once again, Dan points out that some people might go through suffering to help others learn from that suffering. Thank you for the additional reminder that I don't have to beat myself up over this.
Relief Society is fun. I can relax because it's not my week to teach. Yay! Uh oh. Cindy's another one who thinks all is currently lost in my world. Whoops! Sorry. I think I'm caught up now, so no more time warps. Tina had no idea what cancer patients go through until she started reading this blog. Sorry to burst that bubble and destroy that innocence for you.
This is my experience--this time. Every experience, even with the same disease, is different. Different lessons to be learned, a different series of events to conquer. Stay tuned!
While we're driving home from church, we leave the windows open. Jordan is sitting behind me in the van. Suddenly he yells, "Trish!" What? What's going on? "You need to roll up your window. A clump of your hair just hit me in the face." Oh the joys of chemo.
Shoot! I shouldn't have left the blog at the point I did last night. Everything's dark in my blog world right now, but I'm feeling great and doing well. There's a time disconnect that people might not realize. There's the bishop. He's greatly concerned. I try to assure him that things are much better now.
Wow! Check out the lyrics of today's Sacrament Hymn, #169. It's one of my favorites. Was written by L. Tom Perry's son and a former stake president of mine.
And silently we pray.
For courage to accept thy will.
To listen and obey.
We love thee Lord.
Our hearts are full.
We'll walk thy chosen way.
I'm amazed I can see the notes through my tears.
Dale's speaking today. The subject is Family History. My thoughts turn to Tavia.
I wonder how her journal entries would read if she were allowed to go back and recreate them. Oooh, another interesting thought. Was she called home to help me through the BMT ordeal? The thought comforts me, but she probably has a much grander work in store. I wonder what she learned about courage and faith while on the earth.
Dan is back in Sunday School. We're in the last days of Christ's mortal life. I'm struck with another thought. Christ knows as soon as he dies that there is nothing His Father can ask that He isn't willing to do. What strength! What confidence! That's what I'm working towards--full submission with complete faith.
When Dan draws attention to me, I share my thought with the class. Once again, Dan points out that some people might go through suffering to help others learn from that suffering. Thank you for the additional reminder that I don't have to beat myself up over this.
Relief Society is fun. I can relax because it's not my week to teach. Yay! Uh oh. Cindy's another one who thinks all is currently lost in my world. Whoops! Sorry. I think I'm caught up now, so no more time warps. Tina had no idea what cancer patients go through until she started reading this blog. Sorry to burst that bubble and destroy that innocence for you.
This is my experience--this time. Every experience, even with the same disease, is different. Different lessons to be learned, a different series of events to conquer. Stay tuned!
While we're driving home from church, we leave the windows open. Jordan is sitting behind me in the van. Suddenly he yells, "Trish!" What? What's going on? "You need to roll up your window. A clump of your hair just hit me in the face." Oh the joys of chemo.
Saturday, July 9, 2011
Big day planned, but it starts with a phone call. Last night ended with a phone call, but Dale was so kind to let me sleep through it.
About 10 p.m., my mom called. Insisted that it was urgent and he needed to wake me. He just wasn't willing. I'm so grateful. Less drama is good. It seems my sister, Tavia, who is severely mentally handicapped, and who lived with us for about eight months about four years ago had surgery earlier in the week. Now she's having complications and it's not looking good. Duly noted.
This morning's call is from Tiffany, another sister. (Sensing a theme with our names? 10 kids, all names start with T. Tavia's is probably the most unique. From Octavia, meaning eight. She's number 8 out of 10.) Tiffany's on her way to LDS Hospital to visit with Tavia because she's taken a turn for the worse.
Dale and I discuss if we should try to rush out the door and drive to the Avenues in Salt Lake this morning? I don't want to face that hospital just yet. The threat makes me shudder. I'm not supposed to visit hospitals or any places with lots of people and lots of infections. Tavia knows my heart. She's okay with that, no matter what happens. We're at peace with our decision.
It's a good thing, because Tiffany calls just twenty minutes later. She hasn't arrived yet, but Tavia just passed away. She's going to continue anyway but is still planning on coming to our home later in the morning.
I should feel sad, a huge sense of loss, right? There's a small sense of that, but I feel joy, a lifting instead. How cool it is imagining Tavia now able to talk and communicate clearly, to move her body quickly with ease, to have her faculties restored. What a blessing! I'm slightly jealous as I imagine Karen, my sister-in-law that died last year, having a conversation with Tavia about Emily, Karen and Tim's daughter who has the same genetic disorder as Tavia. That I would like to participate in. Hooray for you, Tavia. I wish I'd had one more chance to give you a hug and hear your sweet giggle and Yeah! expression, but we'll have lots more time for even better discussions sometime. I wonder if you learned anything useful from me, dear sister. I learned lots from you. You always found joy in the smallest things in this life, even encumbered as you were temporarily. Your place is assured. I will work harder to meet you there. Farewell for now.
And now it's time to get ready for family pictures. The last time we had family pictures taken, we found a week later that I had Hodgkins. I think we're long overdue, and we need to hurry before my hair falls out sometime this next week.
We've arranged for Cameron, Skyler, Skyler's fiancee, Hannah, and everyone to wear blue jeans and a solid colored bright shirt and meet at 10:00 a.m. Better get moving.
Good thing we're doing this today. Each hand is full of about ten hairs as I wash my hair. I know what that means. It's definitely starting to fall out. If only I make it last through Sunday. Well, it's not handfuls and clogging the shower drain yet. We're good so far.
Meet at Heritage Park and try lots of different things. Very creative places for pictures. We have lots of fun, but don't have a lot of time. Tiffany arrived about thirty minutes late from getting to visit Tavia's body for a few minutes. Skyler needs to head to work, so we wrap up pretty quickly. I wish we had more time, but I'm grateful that we made this a priority. Thanks everybody!
And we're just in time for Travis's 14th birthday party of laser tag with the three friends we could reach that are available. It sounds like they had a blast. I'm so glad. Things seem kind of half hearted. Rush to get pictures done. Rush to get to Travis's party. Rush to the next thing. At least we're getting them done.
Next? Hannah's bridal shower. Rush to Provo. I don't want to go, but I do want to support Hannah and Skyler. If there's lots of people, I'll make an early exit and I have a viable excuse. We're eight minutes late, but I'm glad Miriam and I make it. No one else is there but the host and Hannah's older sister, who drove down from Pocatello to be there. No one else comes until another 40 minutes goes by. That person lives about half a block away. Are we way early? Nope. Only one other person comes--a full hour late. Strange. Can't argue with Hannah's colors though--purple, yellow, white, and black, with purple being the dominant color. It's my color, but I'm definitely willing to share it with her. . .lol
Whew! Survived the day and everything it brought. Have fun, Tavia, exploring new possibilities.
About 10 p.m., my mom called. Insisted that it was urgent and he needed to wake me. He just wasn't willing. I'm so grateful. Less drama is good. It seems my sister, Tavia, who is severely mentally handicapped, and who lived with us for about eight months about four years ago had surgery earlier in the week. Now she's having complications and it's not looking good. Duly noted.
This morning's call is from Tiffany, another sister. (Sensing a theme with our names? 10 kids, all names start with T. Tavia's is probably the most unique. From Octavia, meaning eight. She's number 8 out of 10.) Tiffany's on her way to LDS Hospital to visit with Tavia because she's taken a turn for the worse.
Dale and I discuss if we should try to rush out the door and drive to the Avenues in Salt Lake this morning? I don't want to face that hospital just yet. The threat makes me shudder. I'm not supposed to visit hospitals or any places with lots of people and lots of infections. Tavia knows my heart. She's okay with that, no matter what happens. We're at peace with our decision.
It's a good thing, because Tiffany calls just twenty minutes later. She hasn't arrived yet, but Tavia just passed away. She's going to continue anyway but is still planning on coming to our home later in the morning.
I should feel sad, a huge sense of loss, right? There's a small sense of that, but I feel joy, a lifting instead. How cool it is imagining Tavia now able to talk and communicate clearly, to move her body quickly with ease, to have her faculties restored. What a blessing! I'm slightly jealous as I imagine Karen, my sister-in-law that died last year, having a conversation with Tavia about Emily, Karen and Tim's daughter who has the same genetic disorder as Tavia. That I would like to participate in. Hooray for you, Tavia. I wish I'd had one more chance to give you a hug and hear your sweet giggle and Yeah! expression, but we'll have lots more time for even better discussions sometime. I wonder if you learned anything useful from me, dear sister. I learned lots from you. You always found joy in the smallest things in this life, even encumbered as you were temporarily. Your place is assured. I will work harder to meet you there. Farewell for now.
And now it's time to get ready for family pictures. The last time we had family pictures taken, we found a week later that I had Hodgkins. I think we're long overdue, and we need to hurry before my hair falls out sometime this next week.
We've arranged for Cameron, Skyler, Skyler's fiancee, Hannah, and everyone to wear blue jeans and a solid colored bright shirt and meet at 10:00 a.m. Better get moving.
Good thing we're doing this today. Each hand is full of about ten hairs as I wash my hair. I know what that means. It's definitely starting to fall out. If only I make it last through Sunday. Well, it's not handfuls and clogging the shower drain yet. We're good so far.
Meet at Heritage Park and try lots of different things. Very creative places for pictures. We have lots of fun, but don't have a lot of time. Tiffany arrived about thirty minutes late from getting to visit Tavia's body for a few minutes. Skyler needs to head to work, so we wrap up pretty quickly. I wish we had more time, but I'm grateful that we made this a priority. Thanks everybody!
And we're just in time for Travis's 14th birthday party of laser tag with the three friends we could reach that are available. It sounds like they had a blast. I'm so glad. Things seem kind of half hearted. Rush to get pictures done. Rush to get to Travis's party. Rush to the next thing. At least we're getting them done.
Next? Hannah's bridal shower. Rush to Provo. I don't want to go, but I do want to support Hannah and Skyler. If there's lots of people, I'll make an early exit and I have a viable excuse. We're eight minutes late, but I'm glad Miriam and I make it. No one else is there but the host and Hannah's older sister, who drove down from Pocatello to be there. No one else comes until another 40 minutes goes by. That person lives about half a block away. Are we way early? Nope. Only one other person comes--a full hour late. Strange. Can't argue with Hannah's colors though--purple, yellow, white, and black, with purple being the dominant color. It's my color, but I'm definitely willing to share it with her. . .lol
Whew! Survived the day and everything it brought. Have fun, Tavia, exploring new possibilities.
Friday, July 8, 2011
I've got it. The perfect solution to all of my problems. Actually, any one of three solutions work. You pick.
1) Find someone who has a magic wand and can pouf! everything away. Any takers? Dale? Tress? Anyone? Anyone? I make a few tentative inquiries, but alas. Not a valid option. Next.
2) Talk the doctors into putting me into a medically induced coma. About six months ought to cover it. BMT? No problem. I'll sleep right through it. Dale, what do you think of this one? They probably need me conscious so my body has a better fighting chance? Darn. That's two strikes.
3) Got a baseball bat? Know how to use one? Great! Knock me out with it. You can knock me out of my dark funks, put me out for some parts of this next experience. It will be great. Go for it. Dale? What do you mean you probably won't be much support from prison? My youngest sister, Tangi, who told me if there was ANYTHING I needed? A big fat no from her too?
Fine, I'm not talking to either one of you--for at least 3.7 seconds! I suppose if you're not willing, no one else is either. Let me know if I'm mistaken though.
It is good that I can finally joke about all of this.
1) Find someone who has a magic wand and can pouf! everything away. Any takers? Dale? Tress? Anyone? Anyone? I make a few tentative inquiries, but alas. Not a valid option. Next.
2) Talk the doctors into putting me into a medically induced coma. About six months ought to cover it. BMT? No problem. I'll sleep right through it. Dale, what do you think of this one? They probably need me conscious so my body has a better fighting chance? Darn. That's two strikes.
3) Got a baseball bat? Know how to use one? Great! Knock me out with it. You can knock me out of my dark funks, put me out for some parts of this next experience. It will be great. Go for it. Dale? What do you mean you probably won't be much support from prison? My youngest sister, Tangi, who told me if there was ANYTHING I needed? A big fat no from her too?
Fine, I'm not talking to either one of you--for at least 3.7 seconds! I suppose if you're not willing, no one else is either. Let me know if I'm mistaken though.
It is good that I can finally joke about all of this.
Thursday, July 7, 2011
Last night, I noticed that the top incision of my port had a small red circle around it. This morning, that circle is darker. Almost constant burning and sharp, knife life pains. Very warm to the touch, temperature of 99.3 F. Now I know why it's been bothering me so much lately. I know what this is, but I need to go to work. Is it bad enough to warrant a trip to Urgent Care this morning? No, I don't think so. Let's just watch it through the day.
Huh! It's about 2 in the afternoon, and it's now an angry red bar that extends in both directions beyond that incision. I'm probably at my lowest blood counts sometime between yesterday and today. Not the time to be messing with infections.
Let's go visit Urgent Care--again! It's okay. This needs to be seen. I think they might give me a shot of antibiotics to kick start the fight and a prescription to take at home. I tell Dale my self prescription on the way over.
Yup, infection. Yup, nasty stinging, thick injection. (I need to figure out what that thing is. Second time I've needed one in the last few years.) Yup, prescription. Hmmm. I am pretty good at this--at least with my own body. And a prescription for a sleeping aid, only 30 pills, and only for when I know I'll need it. It's what we got with the last occurrence, and it really helped.
It's still early in the evening. "Want to head to the cell phone store?" Dale inquires. His phone is almost dead. He can hear callers only when he puts them on speakerphone. Annoying! I hate that place, but how can I deny him when he's been so good to me?
Add our name to the list. We're sixth. Oh joy! Takes them 35 minutes to call our names. Is that supposed to be good customer service? They know it's a problem, so why don't they fix it? Blah, blah, blah, blah, blah. At first, to avoid those stupid monthly data charges, we thought Dale should get just a basic phone and then an iPod Touch to record calendar items, scriptures, ward directories, etc. I know he's going to hate juggling two devices though. I think it's time for a smart phone, love.
Another 35 minutes goes by while the salesman leads him through the options. I don't even care any more. I just want to go home. My neck now stings and burns from the infection even when I'm sitting or standing still and moving about kills it. I'm so miserable.
Damages come to $241 something for the phone, with a $30 monthly charge to boot. I'm in a dark spot in my head. To my horror, I'm voicing my thoughts out loud to Dale. Let me get this straight. I get cancer. Get an infection. Get an injection. Get a prescription. I'm the one with the job. And you get a new toy that's going to cost us $600 over the next year?
OUCH! Why, Trish, do you get in these dark funks and, more importantly, why don't you learn to edit yourself when you do? Some thoughts we have should never, ever be spoken out loud. I'm immediately mad at myself and apologize over and over to Dale, but the damage is already done. Darn!
I feel awful--both the way I treated my eternal companion and for the way my neck is. I slump into our couch with a heating pad to try and find some relief and the TV remote is poised. Please help me forget reality for a while.
The Crawley's are at the door with an arm full of exquisitely colored lavender tulips and--even more precious--hand made cards by the boys. I'm choked up. How do I warrant such generosity today? Only because I can repent for my foolish and natural ways and resolve to make tomorrow a better day. Thank you for that gift and hope, my Savior!
Huh! It's about 2 in the afternoon, and it's now an angry red bar that extends in both directions beyond that incision. I'm probably at my lowest blood counts sometime between yesterday and today. Not the time to be messing with infections.
Let's go visit Urgent Care--again! It's okay. This needs to be seen. I think they might give me a shot of antibiotics to kick start the fight and a prescription to take at home. I tell Dale my self prescription on the way over.
Yup, infection. Yup, nasty stinging, thick injection. (I need to figure out what that thing is. Second time I've needed one in the last few years.) Yup, prescription. Hmmm. I am pretty good at this--at least with my own body. And a prescription for a sleeping aid, only 30 pills, and only for when I know I'll need it. It's what we got with the last occurrence, and it really helped.
It's still early in the evening. "Want to head to the cell phone store?" Dale inquires. His phone is almost dead. He can hear callers only when he puts them on speakerphone. Annoying! I hate that place, but how can I deny him when he's been so good to me?
Add our name to the list. We're sixth. Oh joy! Takes them 35 minutes to call our names. Is that supposed to be good customer service? They know it's a problem, so why don't they fix it? Blah, blah, blah, blah, blah. At first, to avoid those stupid monthly data charges, we thought Dale should get just a basic phone and then an iPod Touch to record calendar items, scriptures, ward directories, etc. I know he's going to hate juggling two devices though. I think it's time for a smart phone, love.
Another 35 minutes goes by while the salesman leads him through the options. I don't even care any more. I just want to go home. My neck now stings and burns from the infection even when I'm sitting or standing still and moving about kills it. I'm so miserable.
Damages come to $241 something for the phone, with a $30 monthly charge to boot. I'm in a dark spot in my head. To my horror, I'm voicing my thoughts out loud to Dale. Let me get this straight. I get cancer. Get an infection. Get an injection. Get a prescription. I'm the one with the job. And you get a new toy that's going to cost us $600 over the next year?
OUCH! Why, Trish, do you get in these dark funks and, more importantly, why don't you learn to edit yourself when you do? Some thoughts we have should never, ever be spoken out loud. I'm immediately mad at myself and apologize over and over to Dale, but the damage is already done. Darn!
I feel awful--both the way I treated my eternal companion and for the way my neck is. I slump into our couch with a heating pad to try and find some relief and the TV remote is poised. Please help me forget reality for a while.
The Crawley's are at the door with an arm full of exquisitely colored lavender tulips and--even more precious--hand made cards by the boys. I'm choked up. How do I warrant such generosity today? Only because I can repent for my foolish and natural ways and resolve to make tomorrow a better day. Thank you for that gift and hope, my Savior!
Wednesday, July 6, 2011
How can a piece of plastic that's embedded under your skin bug so much? When I move, it changes position and manages to pull, tug, and burn as it finds different corners of its snug little pocket to explore.
Now I remember why I was so eager to have it removed the first time. That, and the fact that hardly anyone is trained or qualified to access one--only the supervisor on shift at AF Hospital, which often means waiting an extra 30-45 minutes before they can come.
Putting it in for only five days (and two nights of 24-hour) of chemo seems a little silly and not worth the time and risks, but it is saving my veins from very damaging chemicals. Hooray for modern technology!
Natalie strikes again! Lasagna and homemade bread this time. And oatmeal chocolate chip cookies and a personal visit from Carolyn. I'm very touched. Thank you.
Now I remember why I was so eager to have it removed the first time. That, and the fact that hardly anyone is trained or qualified to access one--only the supervisor on shift at AF Hospital, which often means waiting an extra 30-45 minutes before they can come.
Putting it in for only five days (and two nights of 24-hour) of chemo seems a little silly and not worth the time and risks, but it is saving my veins from very damaging chemicals. Hooray for modern technology!
Natalie strikes again! Lasagna and homemade bread this time. And oatmeal chocolate chip cookies and a personal visit from Carolyn. I'm very touched. Thank you.
Sunday, July 3, 2011 - turning point
Time to head to church. Why am I dreading this? Just make it through the day, Trish. That's all you have to do.
It's Fast Sunday, but there's no way I can fast. I need to eat or drink something small about every two hours, just to keep the erruptable stomach threats down to a semi manageable state. I feel lousy. It's hard to even sit in Sacrament Meeting, so I wonder out to the lobby to sit on the couch.
Someone (I think it's Randy) comes by, notices my discomfort, and asks if he should find someone else to play the closing hymn. No, I'll make it through. That's my goal for the day, after all.
Darn! Dan isn't teaching Sunday School today. No offense to others, but I really appreciate his lessons. Ever have people in your life that you feel have learned the same lessons along the spiritual road path as you? Dan is one of those people in my life. I love his insights. Remember, you just have to survive, Trish. No high expectations today.
Relief Society time. Should I give up and go home? That would be easier, but I know I'm not in for the easier haul. Somewhat reluctantly, I stay. I'm intrigued because one of my dearest friends, Cindy, is teaching. Oh, how I love her! Seems I made the right decision.
She starts talking about unity, how we need to work and serve each other to become closer. Uh oh. Now, she's making the announcement about me. I agreed to it. I'm slightly terrified to hear this, but relieved too. No more secrets. No more not being able to discuss cancer more openly.
Embarassing though too. Why three times? What could I possibly learn this time that I was too dense to get the first two times? Why am I so stupid that I'm not getting it? Why the same thing again? Maybe if I took better care of my physical body, I wouldn't be facing this again. I'm really good at berrating myself.
Wait a minute, Trish. Here's a new thought. What possible misdeed could you have committed at 7 to earn the punishment of Hodgkins? How could you have possibly not taken care of your body enough to deserve this? Hmmm? Maybe it's time to let that one go, Trish.
Cindy has to leave her lesson momentarily because the bishop is at the door and needs her, so she goes. Another member of the presidency takes over without any hesitation, except to ask if there are any comments because she doesn't have the notes for the rest of the lesson. And Cindy's back in just a moment or two.
The interruption stops my mental bashing session. "Good! Are you paying full attention now? Finished?" a small voice seems to say in the back of my mind.
In absolute astonishment and amazement, I watch as my dear friend valiantly retries to teach the lesson that she's worked on for over a month, and then realizes it's not the right choice. Haltingly, voice breaking, she explains that there's someone in the bishop's office who's really struggling right now. He came to get her, found out she was teaching, and asked her to come as soon as her lesson was over. She realizes that if she's going to learn anything from her lesson, she needs to go give whatever assistance she can now--not when it might be more convenient or less unusual. And she walks out the door to serve. Wow! What an example! There's lots to be learned here.
If I'm really at the end of my rope, if a BMT really tests my coping skills to their outermost limits and I don't have any more to call on, I can call on others--lots of others. It's such a strong, actionable reminder of that.
The lesson concludes, and immediately there's Katie at my side. She's one of the other people in my life that seems to have learned the same lessons on life's path that I have. Her spiritual strength is so strong, it's tangible to me. I can feel it. Her comments speak directly to my spirit. We need people like this in our lives. If only she knew how weak and stupid I feel for not getting the right lessons during the last two occurrences. What's this? Hold on. What is she saying?
Something about how much she admires my strength and my faith. Huh? I voice my concerns that I'm feeling too stupid to get it, and one of MY beacons turns to me and says, "No, that's not true. Maybe we're all supposed to learn something from you. You are one of my heroes, Trish."
Really? Suddenly, all of the guilt and fear and doubt and darkness lifts. There's hope and faith and light again. If one of my pillars occasionally looks to me, I can let go of this stupidness. I can be strong for her and for others. And if I'm not feeling strong at any particular time, I can call on others to fill that momentary void.
My world makes sense again. I get it. I heard, Heavenly Father. Thank you, for making it so obvious that I can't deny it. A great burden has been lifted today. Wow!
I'm so glad the darkness is gone. Now I can enjoy celebrating Father's Day with Dale and the kids today. Yay Dale! Yay team!
And to top off the day, Sandi and her family come visiting that evening. How fun! I love visitors. What's my favorite cookie flavor? Probably good old chocolate chip. They look disappointed. Shoot. Maybe I should wait before answering next time. Ginger snaps? They made ginger snaps for us. Wonderful. Dale's favorite. You know what? The ginger really helps my stomach. Perfect choice. Thank you.
It's Fast Sunday, but there's no way I can fast. I need to eat or drink something small about every two hours, just to keep the erruptable stomach threats down to a semi manageable state. I feel lousy. It's hard to even sit in Sacrament Meeting, so I wonder out to the lobby to sit on the couch.
Someone (I think it's Randy) comes by, notices my discomfort, and asks if he should find someone else to play the closing hymn. No, I'll make it through. That's my goal for the day, after all.
Darn! Dan isn't teaching Sunday School today. No offense to others, but I really appreciate his lessons. Ever have people in your life that you feel have learned the same lessons along the spiritual road path as you? Dan is one of those people in my life. I love his insights. Remember, you just have to survive, Trish. No high expectations today.
Relief Society time. Should I give up and go home? That would be easier, but I know I'm not in for the easier haul. Somewhat reluctantly, I stay. I'm intrigued because one of my dearest friends, Cindy, is teaching. Oh, how I love her! Seems I made the right decision.
She starts talking about unity, how we need to work and serve each other to become closer. Uh oh. Now, she's making the announcement about me. I agreed to it. I'm slightly terrified to hear this, but relieved too. No more secrets. No more not being able to discuss cancer more openly.
Embarassing though too. Why three times? What could I possibly learn this time that I was too dense to get the first two times? Why am I so stupid that I'm not getting it? Why the same thing again? Maybe if I took better care of my physical body, I wouldn't be facing this again. I'm really good at berrating myself.
Wait a minute, Trish. Here's a new thought. What possible misdeed could you have committed at 7 to earn the punishment of Hodgkins? How could you have possibly not taken care of your body enough to deserve this? Hmmm? Maybe it's time to let that one go, Trish.
Cindy has to leave her lesson momentarily because the bishop is at the door and needs her, so she goes. Another member of the presidency takes over without any hesitation, except to ask if there are any comments because she doesn't have the notes for the rest of the lesson. And Cindy's back in just a moment or two.
The interruption stops my mental bashing session. "Good! Are you paying full attention now? Finished?" a small voice seems to say in the back of my mind.
In absolute astonishment and amazement, I watch as my dear friend valiantly retries to teach the lesson that she's worked on for over a month, and then realizes it's not the right choice. Haltingly, voice breaking, she explains that there's someone in the bishop's office who's really struggling right now. He came to get her, found out she was teaching, and asked her to come as soon as her lesson was over. She realizes that if she's going to learn anything from her lesson, she needs to go give whatever assistance she can now--not when it might be more convenient or less unusual. And she walks out the door to serve. Wow! What an example! There's lots to be learned here.
If I'm really at the end of my rope, if a BMT really tests my coping skills to their outermost limits and I don't have any more to call on, I can call on others--lots of others. It's such a strong, actionable reminder of that.
The lesson concludes, and immediately there's Katie at my side. She's one of the other people in my life that seems to have learned the same lessons on life's path that I have. Her spiritual strength is so strong, it's tangible to me. I can feel it. Her comments speak directly to my spirit. We need people like this in our lives. If only she knew how weak and stupid I feel for not getting the right lessons during the last two occurrences. What's this? Hold on. What is she saying?
Something about how much she admires my strength and my faith. Huh? I voice my concerns that I'm feeling too stupid to get it, and one of MY beacons turns to me and says, "No, that's not true. Maybe we're all supposed to learn something from you. You are one of my heroes, Trish."
Really? Suddenly, all of the guilt and fear and doubt and darkness lifts. There's hope and faith and light again. If one of my pillars occasionally looks to me, I can let go of this stupidness. I can be strong for her and for others. And if I'm not feeling strong at any particular time, I can call on others to fill that momentary void.
My world makes sense again. I get it. I heard, Heavenly Father. Thank you, for making it so obvious that I can't deny it. A great burden has been lifted today. Wow!
I'm so glad the darkness is gone. Now I can enjoy celebrating Father's Day with Dale and the kids today. Yay Dale! Yay team!
And to top off the day, Sandi and her family come visiting that evening. How fun! I love visitors. What's my favorite cookie flavor? Probably good old chocolate chip. They look disappointed. Shoot. Maybe I should wait before answering next time. Ginger snaps? They made ginger snaps for us. Wonderful. Dale's favorite. You know what? The ginger really helps my stomach. Perfect choice. Thank you.
Friday/Saturday, July 1-2, 2011
Not a lot to add for these days.
Even on two anti-nausea prescriptions, my stomach seems ready to blow at any moment. It ebbs and flows, but it's pretty intense at times. Violently hurling is one of the things I remember most from chemo when I was 7. Thankfully, we're not there.
I'm so tired.
Last occurrence, I felt pretty good, energetic even until the very last month. Then, I crashed. Took the entire month off work, sat in a chair, and basically watched the world go by. It took too much energy most days to participate in it. So unlike me. Usually, I have a hard time watching a movie or TV without working on a project and keeping my hands busy and productive.
This feels like that time, but it's only the first treatment, and I'm not at the lowest blood count period yet. What's going on? I have moments when I feel almost back to normal. Dale will ask, "Are you up for a movie or do you want to watch this show with me?" Sure, love. Sounds great. He starts somthing and five minutes later, I'm sound asleep. Dale covers me up and doesn't let anyone interrupt me. This process continues several times over the weekend.
Even on two anti-nausea prescriptions, my stomach seems ready to blow at any moment. It ebbs and flows, but it's pretty intense at times. Violently hurling is one of the things I remember most from chemo when I was 7. Thankfully, we're not there.
I'm so tired.
Last occurrence, I felt pretty good, energetic even until the very last month. Then, I crashed. Took the entire month off work, sat in a chair, and basically watched the world go by. It took too much energy most days to participate in it. So unlike me. Usually, I have a hard time watching a movie or TV without working on a project and keeping my hands busy and productive.
This feels like that time, but it's only the first treatment, and I'm not at the lowest blood count period yet. What's going on? I have moments when I feel almost back to normal. Dale will ask, "Are you up for a movie or do you want to watch this show with me?" Sure, love. Sounds great. He starts somthing and five minutes later, I'm sound asleep. Dale covers me up and doesn't let anyone interrupt me. This process continues several times over the weekend.
Saturday, July 9, 2011
Thursday, June 30, 2011
Usually, I'm at my most tired state about 7-10 days after chemo. It's called the nadir, or point at which your blood counts are at their lowest.
I don't think ICE is any different, but I feel like I've been run over by a truck. The world has a terrifying edge to it. I don't feel strong, don't feel much hope, seriously doubt my ability to deal effectively with all of this.
I pour out my heart and fears to my Father in prayer, but no tangible relief comes. Not sure what to do next, but it's time to head to work.
I'm in a fog. I'm aiming for survival only today. Just get through the day. "This will test even your strongest coping skills" plays over and over in the background corners of my mind. Will you please just shut up and go away?
Make it until it's time to catch the bus home. I don't feel strong enough or stable enough to even walk the 2.5 blocks to the bus stop. My brother-in-law, Mike, is gracious enough to agree to a short break from his work to drive me. Oh thank you!
Made it on the bus. Just have to keep it together for about an hour, when Dale picks me up from the bus stop. Whatever.
I would never take my own life. I trust Heavenly Father's plan way too much for that. I know the goals I'm working towards. I have, however, asked, repeatedly over the last few weeks, to bring me home if it's possible. I feel terrible even voicing that request, but he knows it's in my heart anyway.
Last time, I felt so safely tucked away into a pocket of faith and love from everyone around me--family, neighbors, ward, work. I remembered the blessing I had as a 7 year-old from my bishop and our home teacher and the promise of perfect health, that I would overcome. And I knew, with the perfect faith of a child, that I would. The promise felt as strong then as the day it was given.
Suddenly, I'm not so sure. Work is not prepared to deal with something like this. My manager is seeking comfort and support from me, not the other way around. Can those I love really be called again to face this test with me? Didn't I wear them out last time? Cancer can be pretty intimidating.
Does that blessing really apply to a third occurrence? It applied to radiation and chemo, of course. But a bone marrow transplant? In my doubting mind, it doesn't seem to cover that. "Even your strongest coping skills." Yeah, not that.
I feel like I'm just going through the motions of life without really participating in them. There's a black fog kind of hanging over me and everything around me.
Dale, did you have any impressions during the blessing that you're not telling me? Any dangers or traps ahead that I can't handle? No, he seems perfectly assured that we'll conquer this together also.
The fog continues on our ride back home.
I walk through our back door, and my heart literally stops for a few beats. What is this? There's a glimmer of hope. The fog disapates slightly.
There, on the table, is a beautiful vase of fresh flowers. Purple flowers. Purple mini mums or carnations, I think. Tied with a gorgeous green ribbon bow. What? There is still beauty in the world and it comes in such an exquisite purple color.
Where did the flowers come from? Jordan says they were dropped off by Natalie just before we got home. She's someone I visit teach. I should be doing this for her. Does she know how heartwarming and hopeful this seemingly small guesture is--today of all days? Thank you, Heavenly Father, for sending a small ray of hope back into my world. Thank you for reminding me that light and love and friendship still exist too. Oh, thank you.
I sleep very well that night.
I don't think ICE is any different, but I feel like I've been run over by a truck. The world has a terrifying edge to it. I don't feel strong, don't feel much hope, seriously doubt my ability to deal effectively with all of this.
I pour out my heart and fears to my Father in prayer, but no tangible relief comes. Not sure what to do next, but it's time to head to work.
I'm in a fog. I'm aiming for survival only today. Just get through the day. "This will test even your strongest coping skills" plays over and over in the background corners of my mind. Will you please just shut up and go away?
Make it until it's time to catch the bus home. I don't feel strong enough or stable enough to even walk the 2.5 blocks to the bus stop. My brother-in-law, Mike, is gracious enough to agree to a short break from his work to drive me. Oh thank you!
Made it on the bus. Just have to keep it together for about an hour, when Dale picks me up from the bus stop. Whatever.
I would never take my own life. I trust Heavenly Father's plan way too much for that. I know the goals I'm working towards. I have, however, asked, repeatedly over the last few weeks, to bring me home if it's possible. I feel terrible even voicing that request, but he knows it's in my heart anyway.
Last time, I felt so safely tucked away into a pocket of faith and love from everyone around me--family, neighbors, ward, work. I remembered the blessing I had as a 7 year-old from my bishop and our home teacher and the promise of perfect health, that I would overcome. And I knew, with the perfect faith of a child, that I would. The promise felt as strong then as the day it was given.
Suddenly, I'm not so sure. Work is not prepared to deal with something like this. My manager is seeking comfort and support from me, not the other way around. Can those I love really be called again to face this test with me? Didn't I wear them out last time? Cancer can be pretty intimidating.
Does that blessing really apply to a third occurrence? It applied to radiation and chemo, of course. But a bone marrow transplant? In my doubting mind, it doesn't seem to cover that. "Even your strongest coping skills." Yeah, not that.
I feel like I'm just going through the motions of life without really participating in them. There's a black fog kind of hanging over me and everything around me.
Dale, did you have any impressions during the blessing that you're not telling me? Any dangers or traps ahead that I can't handle? No, he seems perfectly assured that we'll conquer this together also.
The fog continues on our ride back home.
I walk through our back door, and my heart literally stops for a few beats. What is this? There's a glimmer of hope. The fog disapates slightly.
There, on the table, is a beautiful vase of fresh flowers. Purple flowers. Purple mini mums or carnations, I think. Tied with a gorgeous green ribbon bow. What? There is still beauty in the world and it comes in such an exquisite purple color.
Where did the flowers come from? Jordan says they were dropped off by Natalie just before we got home. She's someone I visit teach. I should be doing this for her. Does she know how heartwarming and hopeful this seemingly small guesture is--today of all days? Thank you, Heavenly Father, for sending a small ray of hope back into my world. Thank you for reminding me that light and love and friendship still exist too. Oh, thank you.
I sleep very well that night.
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