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!
Purple Everywhere
Daily Herald picture
Sunday, July 31, 2011
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.
Wednesday, June 29, 2011
I make the mistake last night of looking at LDS Hospital's Web site. I know they have an entire section dedicated to the bone marrow transplant (BMT) process. I guess it's time to get out of denial and get more informed.
Probably shouldn't have done that. It doesn't speak in details and is still intense and terrifying. One phrase won't leave me alone. "This period can be very difficult and test even your most effective coping skills." What?! I think I'm strong. I think I've learned lots. I think I cope well with medical things that scare most people. This is going to test even my most effective skills? I DON'T WANT TO! I call my sister, Tress, in tears. What if I can't do this? I'm scared. She's my best friend and one of my greatest supporters, next to Dale; but it's still hard to find any comfort in the world. I don't sleep well that night.
Head to work. Dale is greatly amused as I load everything into the passenger side of the car--including the chemo bag--and then proceed to head to the driver's side. "Trish. That's not going to work" just as I realize my own mistake. I pick up the chemo bag and carry it to the other side of the car. That's twice I've tried to leave it behind. Soon I can.
Leave work at 1, so I have enough time for the last dose of drugs for this round. Pick up Dale on my way through. We arrive about 2 at the clinic.
Join the Circle of Trust again! It's quieter today. The nurse is explaining some things to a new patient. You can't help but hear everything. Weird. Sounds very familiar. I interrupt as I'm getting unhooked from the pump and hooked up for more healing poisons. What do you have? May I ask? "Hodgkins lympoma." is the reponse. Are you kidding me? Suddenly, for being such a rare cancer (less than 1% of all cancers), it's everywhere!
Today goes a lot faster. Still not sure what drugs and in what order they're given. Details to come. After about an hour, we pull out the Cribbage board again. Get a Neulasta shot to stimulate my bone marrow to produce more cells and overcome the chemo more quickly.
Around 4:30, we leave and head home. No more friends to take with us. And no more IVs to start again, as long as I keep the port. I'm so exhausted and so scared. Where's my hope and faith and courage and strength?
Probably shouldn't have done that. It doesn't speak in details and is still intense and terrifying. One phrase won't leave me alone. "This period can be very difficult and test even your most effective coping skills." What?! I think I'm strong. I think I've learned lots. I think I cope well with medical things that scare most people. This is going to test even my most effective skills? I DON'T WANT TO! I call my sister, Tress, in tears. What if I can't do this? I'm scared. She's my best friend and one of my greatest supporters, next to Dale; but it's still hard to find any comfort in the world. I don't sleep well that night.
Head to work. Dale is greatly amused as I load everything into the passenger side of the car--including the chemo bag--and then proceed to head to the driver's side. "Trish. That's not going to work" just as I realize my own mistake. I pick up the chemo bag and carry it to the other side of the car. That's twice I've tried to leave it behind. Soon I can.
Leave work at 1, so I have enough time for the last dose of drugs for this round. Pick up Dale on my way through. We arrive about 2 at the clinic.
Join the Circle of Trust again! It's quieter today. The nurse is explaining some things to a new patient. You can't help but hear everything. Weird. Sounds very familiar. I interrupt as I'm getting unhooked from the pump and hooked up for more healing poisons. What do you have? May I ask? "Hodgkins lympoma." is the reponse. Are you kidding me? Suddenly, for being such a rare cancer (less than 1% of all cancers), it's everywhere!
Today goes a lot faster. Still not sure what drugs and in what order they're given. Details to come. After about an hour, we pull out the Cribbage board again. Get a Neulasta shot to stimulate my bone marrow to produce more cells and overcome the chemo more quickly.
Around 4:30, we leave and head home. No more friends to take with us. And no more IVs to start again, as long as I keep the port. I'm so exhausted and so scared. Where's my hope and faith and courage and strength?
Tuesday, June 28, 2011
Head to AF Hospital--again!--just about 8:30 a.m. This time, we're headed for radiology.
Yes, they're expecting me, but the front desk doesn't know about the bone marrow biopsy or have any orders for it. Good thing I asked. We get that straightened out.
Hurry up and wait again. Okay, I ask to have Dale come back with us and he does.
Oh good. You already have an IV. That's great. We're going to access it and give you some sleepy medication. Really? This again? Can I get this dialogue pre-recorded so that I can just press a button and have it all work out? No sedation. Yes, I'm sure.
Here's the pathologist to do the biopsy. He seems way nervous--especially when he realizes I'll be conscious. Sorry to be so intimidating. It goes fairly smoothly. A sharp stab, some warm stinging in my right hip. I'm good. "I'm making a small incision now" as a small trail of warm fluid runs down my body. Yep. Got that.
"Trish, I'm sitting on your bone, about to drill through." Yep. I can feel it. Bone's never get completely numb. Go for it. This part isn't that fun, but it's not that difficult either. Nurse asks how I'm doing, then laughs out loud, "She says she's fine as she quints her eyes close." But I don't yell or move or do anything else, so she takes me at my word.
Then they ask Dale how he's doing. Can't have him passing out in the corner. Are you kidding? He's a former funeral director, I inform them. If embalming bodies didn't bother him, do you really think a little biopsy will?
Okay, large jolt--almost like a strong electric current--runs down my leg. Almost finished and we need only two samples and no aspirations. Great. Done. Some pressure. A band aid. We're done with the first part of the day.
Move to an adjoining room with a large X-ray or CT machine. Transfer to the gurney. How are we ever going to access the top right side of my chest? I volunteer, "Last time they had to use duct tape to secure my chest down. When they removed the port, they kept me partially sitting up. Whatever works for you." Time for more duct tape. They apologize over and over again for having to use so much tape.
Are you sure you don't want any sedation? Yes, I'm positive. Thanks, for asking. Well, we are accessing your IV to give you an antibiotic. Great.
Lots of draping, even over my head, but they cut away a large hole so I don't feel quite so claustrophobic. Radiologist asks for calm music. Phantom of the Opera springs up, followed by Jessica's Theme from Man From Snowy River. Ahhh, perfect.
Brief stab and more lidocaine warming. I have the perfect captive audience, but I forget to ask them why there are two incisions required. One probably hooks to a vein, but I might never find out if I don't remember to ask. Exact same port--a purple, triangular PowerPort--as before.
Decides not to go with his originally intended placement, next to my old one. This one will go out a little from the last one, which should provide better access. Plus, the veins were twisted on the last port, which probably provided some positioning problems. I'm amazed that he can tell all of this from live scans he's taking throughout.
Some pushing and tugging as they clear a pocket for the port to go in. Then, more waiting.
The radiologist isn't intimidated that I'm not asleep and there's some bantering back and forth. I learn about his weekend plans with his family and listen to other fun chitchat.
How many ports do you place a week? "Used to be 3-4, but now it's not that common." What changed? "Well, surgeons realized they could place them so they steal all of the cases they can. However, if there's any kind of risk, like a suspicious history or second port placement, they send them to us radiologists, which is how you ended up here." Interesting.
After about thirty minutes, there's a phone call in the room. Matt, a technician, answers. "Hey, have we ever given sedation for a xxx shot? No? I didn't think so. Maybe we can talk her out of it when it's time." Wait, I harass him, let me get this straight. For the patients who don't want any sedation, you try to talk them into it. For the patients that do want sedation, you try to talk them out of it. I see how you are. Whatever the patient wants, you're not into. It's kind of funny. "No, you're just strange, Trish. Most people beg to be put out for a 45-minute procedure. She's having a 5-minute injection and wants to sleep through it."
Time to access the port, but it's being very stubborn. I count three, four, five attempts. Finally! What was the difficulty, I ask a bit later as I'm being undraped, untaped, and unhooked? Does that mean we're going to have positional problems with this port too? It's just all the swelling and irration from a newly placed port. Oh good. They leave the port accessed so I can go next door and receive more chemo.
I'm dressed and ready to leave less than five minutes later. Oh wait. I've been fasting so that everyone else would be comfortable, and now I'm facing about four hours of chemo? We've got to get something to eat first.
Head downstairs to the cafeteria. It's opening in five minutes for lunch. I'm a little dizzy and tired, so I sit in a chair up a nearby hallway. I'm ravenous as soon as I smell food. My ham and baked potato is almost finished before Dale's hamburger is off the grill and before we've paid for anything. Oh well. I still have grapefruit juice to go.
After we sit down, Matt from Radiology comes in. Hey. Did you talk your next patient out of the sedation? "Actually, I guess we kind of did because she ended up not having the injection."
Finally, we're ready for the third part of the day--more chemo--and head next doors.
Back into the Circle of Trust. There's already two other patients there. It's pretty common to have at least two or three people getting chemo together. I'm not sure what the drug regimen is today. I'll have to find out and detail it later. It's considered the long day of the three. Between three and a half hours and four hours passes with more poisons dripping into my body. This time Dale and I are prepared, and we spend the time playing multiple rounds of Cribbage. Dr. Wendy comes in to watch us play for a while.
Finished! But not quite complete. Now, I'm hooked up to a pump that disappears into a black bag with my name written on tape on the inside of it. Lovely! I'm so excited to take another friend home tonight, and two days in a row also. One of the chemo drugs is so irritating that they diffuse it as much as they can over a 24-hour period to alleviate its caustic side effects. The bag is almost bursting but will gradually shrink. It's not too heavy, but it's going to take some getting used to--especially when it beeps and clicks every two minutes or so to load the next increment of medicine. "Bury it under a pillow at night," the nurse advises.
Finally! I get to leave the hospital and cancer clinic at around 4:30 that day. I'm exhausted!
Yes, they're expecting me, but the front desk doesn't know about the bone marrow biopsy or have any orders for it. Good thing I asked. We get that straightened out.
Hurry up and wait again. Okay, I ask to have Dale come back with us and he does.
Oh good. You already have an IV. That's great. We're going to access it and give you some sleepy medication. Really? This again? Can I get this dialogue pre-recorded so that I can just press a button and have it all work out? No sedation. Yes, I'm sure.
Here's the pathologist to do the biopsy. He seems way nervous--especially when he realizes I'll be conscious. Sorry to be so intimidating. It goes fairly smoothly. A sharp stab, some warm stinging in my right hip. I'm good. "I'm making a small incision now" as a small trail of warm fluid runs down my body. Yep. Got that.
"Trish, I'm sitting on your bone, about to drill through." Yep. I can feel it. Bone's never get completely numb. Go for it. This part isn't that fun, but it's not that difficult either. Nurse asks how I'm doing, then laughs out loud, "She says she's fine as she quints her eyes close." But I don't yell or move or do anything else, so she takes me at my word.
Then they ask Dale how he's doing. Can't have him passing out in the corner. Are you kidding? He's a former funeral director, I inform them. If embalming bodies didn't bother him, do you really think a little biopsy will?
Okay, large jolt--almost like a strong electric current--runs down my leg. Almost finished and we need only two samples and no aspirations. Great. Done. Some pressure. A band aid. We're done with the first part of the day.
Move to an adjoining room with a large X-ray or CT machine. Transfer to the gurney. How are we ever going to access the top right side of my chest? I volunteer, "Last time they had to use duct tape to secure my chest down. When they removed the port, they kept me partially sitting up. Whatever works for you." Time for more duct tape. They apologize over and over again for having to use so much tape.
Are you sure you don't want any sedation? Yes, I'm positive. Thanks, for asking. Well, we are accessing your IV to give you an antibiotic. Great.
Lots of draping, even over my head, but they cut away a large hole so I don't feel quite so claustrophobic. Radiologist asks for calm music. Phantom of the Opera springs up, followed by Jessica's Theme from Man From Snowy River. Ahhh, perfect.
Brief stab and more lidocaine warming. I have the perfect captive audience, but I forget to ask them why there are two incisions required. One probably hooks to a vein, but I might never find out if I don't remember to ask. Exact same port--a purple, triangular PowerPort--as before.
Decides not to go with his originally intended placement, next to my old one. This one will go out a little from the last one, which should provide better access. Plus, the veins were twisted on the last port, which probably provided some positioning problems. I'm amazed that he can tell all of this from live scans he's taking throughout.
Some pushing and tugging as they clear a pocket for the port to go in. Then, more waiting.
The radiologist isn't intimidated that I'm not asleep and there's some bantering back and forth. I learn about his weekend plans with his family and listen to other fun chitchat.
How many ports do you place a week? "Used to be 3-4, but now it's not that common." What changed? "Well, surgeons realized they could place them so they steal all of the cases they can. However, if there's any kind of risk, like a suspicious history or second port placement, they send them to us radiologists, which is how you ended up here." Interesting.
After about thirty minutes, there's a phone call in the room. Matt, a technician, answers. "Hey, have we ever given sedation for a xxx shot? No? I didn't think so. Maybe we can talk her out of it when it's time." Wait, I harass him, let me get this straight. For the patients who don't want any sedation, you try to talk them into it. For the patients that do want sedation, you try to talk them out of it. I see how you are. Whatever the patient wants, you're not into. It's kind of funny. "No, you're just strange, Trish. Most people beg to be put out for a 45-minute procedure. She's having a 5-minute injection and wants to sleep through it."
Time to access the port, but it's being very stubborn. I count three, four, five attempts. Finally! What was the difficulty, I ask a bit later as I'm being undraped, untaped, and unhooked? Does that mean we're going to have positional problems with this port too? It's just all the swelling and irration from a newly placed port. Oh good. They leave the port accessed so I can go next door and receive more chemo.
I'm dressed and ready to leave less than five minutes later. Oh wait. I've been fasting so that everyone else would be comfortable, and now I'm facing about four hours of chemo? We've got to get something to eat first.
Head downstairs to the cafeteria. It's opening in five minutes for lunch. I'm a little dizzy and tired, so I sit in a chair up a nearby hallway. I'm ravenous as soon as I smell food. My ham and baked potato is almost finished before Dale's hamburger is off the grill and before we've paid for anything. Oh well. I still have grapefruit juice to go.
After we sit down, Matt from Radiology comes in. Hey. Did you talk your next patient out of the sedation? "Actually, I guess we kind of did because she ended up not having the injection."
Finally, we're ready for the third part of the day--more chemo--and head next doors.
Back into the Circle of Trust. There's already two other patients there. It's pretty common to have at least two or three people getting chemo together. I'm not sure what the drug regimen is today. I'll have to find out and detail it later. It's considered the long day of the three. Between three and a half hours and four hours passes with more poisons dripping into my body. This time Dale and I are prepared, and we spend the time playing multiple rounds of Cribbage. Dr. Wendy comes in to watch us play for a while.
Finished! But not quite complete. Now, I'm hooked up to a pump that disappears into a black bag with my name written on tape on the inside of it. Lovely! I'm so excited to take another friend home tonight, and two days in a row also. One of the chemo drugs is so irritating that they diffuse it as much as they can over a 24-hour period to alleviate its caustic side effects. The bag is almost bursting but will gradually shrink. It's not too heavy, but it's going to take some getting used to--especially when it beeps and clicks every two minutes or so to load the next increment of medicine. "Bury it under a pillow at night," the nurse advises.
Finally! I get to leave the hospital and cancer clinic at around 4:30 that day. I'm exhausted!
Thursday, July 7, 2011
Monday, June 27, 2011
I drive to work, to be prepared for whatever the day will bring. And boy, does it bring!
It's 9:30 and I get a call from Dr. Wendy's office. Can I be meet her about 1? Sure.
Regular meeting with my development team. They should know why my schedule's going to change, but how do I start this conversation? "I want you to hear this directly from me and not through any other pipeline. I have cancer. I'll probably be starting chemo this week. I'll keep you informed as to when I'll be in the office, when I might be working from home, and when I'll be off." Goes better than anticipated.
At the appropriate time, I leave work, swing home to pick up Dale, and head 1.5 miles down the road. What's going to happen now?
Meet with Dr. Wendy. All results are in. No real surprises. What is surprising is that this isn't considered Stage I. Instead, it's considered a recurrence of the Stage III-B that I had two and a half years ago. And she's talked to the transplant team at LDS Hospital already. They're recommending a bone marrow transplant.
"No" I scream loudly in her office. And what support does she offer for my almost subconscious and very loud protest? Looking directly at Dale, she flips the report papers she's holding in her hand, pens "YES" in red block letters, and turns the paper towards me. Whatever!
So now what? Recommending two rounds of ICE chemo this time, mostly to get my body ready for the transplant. What's ICE? That's a new acronym to me. So far, I've had MOPP with radiation, and ADV, without the B. Now ICE?
Ifosfamide or Ifex (with Mensa to protect my bladder), Carboplatin, and Etoposide. It's given over a three-day period, every three weeks. Wow! We're really doing this. When? I don't have a port yet.
Right now, of course. Today! I should have known. I'd love to have one day to process all of the information, then come back tomorrow to start; but that's not how we do things here. In fact, here's the nurse to start an IV--again! 5 times in 13 days. At least, the ratio is getting smaller now.
Shouldn't we go back to the MOPP because it cured me for thirty years--even when my parents didn't finish the treatments or do any of the recommended follow up? There's a limit to how much of some chemo drugs our bodies can get over its lifetime. While we haven't exceeded those limits yet, MOPP has the worst side effects. We'll save it in case we ever need a last resort.
Some preliminary information and consent forms to sign. This isn't even half of the information they overwhelmed me with last time. Is that because this is easier or because I'm supposed to remember it all from before?
Move out of the exam room to join the rest of patients in the back, Circle of Trust room. It's a large open room with six recliners of varying degrees of comfort positioned into almost a full circle. A handy IV pole sits next to each chair and a trash can. And the nurses' desk tucked into one corner.
I call it the Circle of Trust room because you hear everything that everyone says in that room: patients, nurses, visitors--it makes no difference. Once you're in that circle, you'd better be trustworthy.
Look! I forgot how beautiful those stained glass stars of various sizes and in blues and frosted and clear glass are. A sign of some hope in the world. But we didn't bring the cribbage board today. That's how Dale and I passed a lot of time waiting for former ADV treatments to drip in.
We start backwards, with the Etoposide first. It takes about 2-2.5 hours to infuse. It's so weird to think of poison being dripped into my veins and heart and body. Okay. Don't spend too much time on that thought, Trish, or you'll rip the needle out and go running and screaming from the building.
The nurses are so nice though because they leave the IV in to save time and having to start another IV in the morning, when I'm scheduled for the port placement and bone marrow biopsy. As soon as I've finished with those two things at the hospital, I get to come over for the next part of ICE.
Lovely! I can hardly wait, and I get to take a friend (the IV) home with me? This just gets better and better because everyone should have medical things follow them home and not be able to pretend they don't exist for just a few hours!
It's 9:30 and I get a call from Dr. Wendy's office. Can I be meet her about 1? Sure.
Regular meeting with my development team. They should know why my schedule's going to change, but how do I start this conversation? "I want you to hear this directly from me and not through any other pipeline. I have cancer. I'll probably be starting chemo this week. I'll keep you informed as to when I'll be in the office, when I might be working from home, and when I'll be off." Goes better than anticipated.
At the appropriate time, I leave work, swing home to pick up Dale, and head 1.5 miles down the road. What's going to happen now?
Meet with Dr. Wendy. All results are in. No real surprises. What is surprising is that this isn't considered Stage I. Instead, it's considered a recurrence of the Stage III-B that I had two and a half years ago. And she's talked to the transplant team at LDS Hospital already. They're recommending a bone marrow transplant.
"No" I scream loudly in her office. And what support does she offer for my almost subconscious and very loud protest? Looking directly at Dale, she flips the report papers she's holding in her hand, pens "YES" in red block letters, and turns the paper towards me. Whatever!
So now what? Recommending two rounds of ICE chemo this time, mostly to get my body ready for the transplant. What's ICE? That's a new acronym to me. So far, I've had MOPP with radiation, and ADV, without the B. Now ICE?
Ifosfamide or Ifex (with Mensa to protect my bladder), Carboplatin, and Etoposide. It's given over a three-day period, every three weeks. Wow! We're really doing this. When? I don't have a port yet.
Right now, of course. Today! I should have known. I'd love to have one day to process all of the information, then come back tomorrow to start; but that's not how we do things here. In fact, here's the nurse to start an IV--again! 5 times in 13 days. At least, the ratio is getting smaller now.
Shouldn't we go back to the MOPP because it cured me for thirty years--even when my parents didn't finish the treatments or do any of the recommended follow up? There's a limit to how much of some chemo drugs our bodies can get over its lifetime. While we haven't exceeded those limits yet, MOPP has the worst side effects. We'll save it in case we ever need a last resort.
Some preliminary information and consent forms to sign. This isn't even half of the information they overwhelmed me with last time. Is that because this is easier or because I'm supposed to remember it all from before?
Move out of the exam room to join the rest of patients in the back, Circle of Trust room. It's a large open room with six recliners of varying degrees of comfort positioned into almost a full circle. A handy IV pole sits next to each chair and a trash can. And the nurses' desk tucked into one corner.
I call it the Circle of Trust room because you hear everything that everyone says in that room: patients, nurses, visitors--it makes no difference. Once you're in that circle, you'd better be trustworthy.
Look! I forgot how beautiful those stained glass stars of various sizes and in blues and frosted and clear glass are. A sign of some hope in the world. But we didn't bring the cribbage board today. That's how Dale and I passed a lot of time waiting for former ADV treatments to drip in.
We start backwards, with the Etoposide first. It takes about 2-2.5 hours to infuse. It's so weird to think of poison being dripped into my veins and heart and body. Okay. Don't spend too much time on that thought, Trish, or you'll rip the needle out and go running and screaming from the building.
The nurses are so nice though because they leave the IV in to save time and having to start another IV in the morning, when I'm scheduled for the port placement and bone marrow biopsy. As soon as I've finished with those two things at the hospital, I get to come over for the next part of ICE.
Lovely! I can hardly wait, and I get to take a friend (the IV) home with me? This just gets better and better because everyone should have medical things follow them home and not be able to pretend they don't exist for just a few hours!
Wednesday, July 6, 2011
Saturday, June 25, 2011
I love Cedar Hills Parade Day. It's so amazingly cool to be able to walk to the end of our cul-de-sac, carting chairs or a few sleeping bags, cross the road, and have the perfect shaded viewing spot of the entire parade as it passes by.
Come on family. We have to go. Let's not even bother with chairs this year. We'll just use a sleeping bags.
Dale and I leave before anyone else is ready, but I'd like to get situated a little early. I have two dear friends in the neighborhood that I want to seek out. They are dear friends because we taught together in Primary years ago. You learn a lot about people and love them when you serve that closely with them. They deserve to hear the news directly from me.
I find Amy at the bake sale to raise funds for Jessie's cancer treatments. Amazing! Got a minute? Can we talk semi-privately? "Am I in trouble? Have I done something?" she wants to know. Hah! As if. Sorry. If only it were that easy.
Now to track down Sandi. She's still at home and doesn't realize the parade is about to start. Come on. We've got extra room for you. And even an extra sleeping bag, since Olsen's are kind enough to share their chairs with us.
The parade is great fun as candy is thrown wildy and often and small children dodge the next entry to retrieve it all. Our children now feel they're too old to bother with some of the wrapped treats and are content to leave them sit in front of them to be gathered by others or smashed into the pavement. Retrieve the peppermint hard candies and taffies, please. I anticpate them helping a nauseated stomach.
We yell support and cheer whenever we see people we know. There's our dentist; neighborhood funeral director; friends in band, cheerleading, dance troupes, and karate classes; and even an entry from the Intermountain Cancer Center. Priceless! Randy walks with that group. When he sees me, he walks over, grabs my face with two hands, and plants a kiss on my forehead. Dale, did you just see that? I just got kissed from a guy in the parade. I'm a little stunned, but know he just learned of our next battle also and appreciate the small token of support.
Come on family. We have to go. Let's not even bother with chairs this year. We'll just use a sleeping bags.
Dale and I leave before anyone else is ready, but I'd like to get situated a little early. I have two dear friends in the neighborhood that I want to seek out. They are dear friends because we taught together in Primary years ago. You learn a lot about people and love them when you serve that closely with them. They deserve to hear the news directly from me.
I find Amy at the bake sale to raise funds for Jessie's cancer treatments. Amazing! Got a minute? Can we talk semi-privately? "Am I in trouble? Have I done something?" she wants to know. Hah! As if. Sorry. If only it were that easy.
Now to track down Sandi. She's still at home and doesn't realize the parade is about to start. Come on. We've got extra room for you. And even an extra sleeping bag, since Olsen's are kind enough to share their chairs with us.
The parade is great fun as candy is thrown wildy and often and small children dodge the next entry to retrieve it all. Our children now feel they're too old to bother with some of the wrapped treats and are content to leave them sit in front of them to be gathered by others or smashed into the pavement. Retrieve the peppermint hard candies and taffies, please. I anticpate them helping a nauseated stomach.
We yell support and cheer whenever we see people we know. There's our dentist; neighborhood funeral director; friends in band, cheerleading, dance troupes, and karate classes; and even an entry from the Intermountain Cancer Center. Priceless! Randy walks with that group. When he sees me, he walks over, grabs my face with two hands, and plants a kiss on my forehead. Dale, did you just see that? I just got kissed from a guy in the parade. I'm a little stunned, but know he just learned of our next battle also and appreciate the small token of support.
Friday, June 24, 2011
Surgery day! Good things they don't give me much time to contemplate this stuff or I might have a nervous breakdown. Am I more nervous about surgery or what they might or might not find during the surgery? Probably the latter.
Reporting time isn't until 1 p.m., so it's work from home in the morning day. I actually get a lot done, which is somewhat surprising and very helpful for my state of mind.
Head to Same-Day Surgery. Here we go again. There's Connie. She gives me great comfort just being there--to see a calm, experienced face in the midst of all this chaos.
Start another IV (5 times in 10 days). We're going to give you some sleepy medicine. No, you're not. Really? You're sure? Yes. Let me try things my way people. It works quite well for me. So, what do I want?
I'd like the anesthesiologist to be in the room, drugs not drawn but ready in case I request them. But nothing unless I ask. It's so much easier for my body to recover and deal with this way. Trust me. I've been through a bit before. Whew! We're all on board now.
Yes, I'm fasting so you all feel better, even though I probably won't receive any medications that require me to fast. Better to be prepared.
Wait for delays in previous surgeries a while, but we're finally ready. What was supposed to start at 2 is starting at 3:15. Let's get this show on the road.
Wheeled into the room and transfer to the OR bed. Oh look! There are all the implements and tools that will soon be in the crease of my left leg. This is not the time to freak out, Trish. Don't think too much about that.
Listen to the preliminary instrument and sponge counts. Kind of funny to think about. Okay, need to stop that train of thought also.
There's the pathologist from UVRMC bedside. He came up just for this. He's going to do a frozen specimen (free of charge) today to try and make up for the mishandling of the needle biopsy. I'm very impressed and touched by this guesture. We should know by the time I'm wheeled out. Very cool. I tell him I'm 99% sure it's nodular, sclerosing Hodgkins lymphoma, but I need his stamp of authenticity on it before we can proceed with any kind of treatment plan.
Surgery starts, and goes on and on and on. Apparently, my body doesn't like the idea of letting go of its lymph nodes. Of course not! Its plan is to fill each one with cancer, multiple times, so we're totally messing with its diabolical plan today.
The procedure doesn't really hurt. There's a lot of pulling and tugging. At one point, there's a sudden, stabbing, knife-life pain. More lidocaine, please. Ahhhh. Back to waiting. It is freezing cold in this room. Oh well. Dr. Jennifer is great to talk to me and let me know what's going on. Very unusual for a surgeon!
After about 30 minutes, when I can tell things are more intense than they originally planned for, I yell out, "I'm doing great, but this is a lot longer than we all originally anticipated. How are you guys doing?" Everything is great. They almost have it out and can start closing. Cool. It would be cool to watch. Maybe I should work on that aspect if there's ever a next time.
They show me the sample. It's about the size of a slightly mishapen ping pong ball, with a hook-like shape coming off one end. Wow! Bigger than I anticipated. No stitches that need to be removed, just Dermabond that should stay clean and dry for about seven days.
About 30 minutes later, I'm unhooked, undraped, and transferred to a gurney and wheeled into "Recovery." From what? Can I get a drink immediately? Yes, and I can start dressing too. Great.
The pathologist comes in. Oh crud. He looks concerned and tries to make small talk, but I'm in no mood to dally today. I impolitely interrupt. Look, the only bad news you can give me today is that you can't make a definitive diagnosis or there wasn't enough to test. No, he has the diagnosis. It's exactly what we suspected. He feels very comfortable after comparing slides to make a diagnosis, but the full report should be available on Monday.
Let me go home, please! No activity or diet restrictions. Just a three-inch scar safely tucked into the crease of my left leg.
Reporting time isn't until 1 p.m., so it's work from home in the morning day. I actually get a lot done, which is somewhat surprising and very helpful for my state of mind.
Head to Same-Day Surgery. Here we go again. There's Connie. She gives me great comfort just being there--to see a calm, experienced face in the midst of all this chaos.
Start another IV (5 times in 10 days). We're going to give you some sleepy medicine. No, you're not. Really? You're sure? Yes. Let me try things my way people. It works quite well for me. So, what do I want?
I'd like the anesthesiologist to be in the room, drugs not drawn but ready in case I request them. But nothing unless I ask. It's so much easier for my body to recover and deal with this way. Trust me. I've been through a bit before. Whew! We're all on board now.
Yes, I'm fasting so you all feel better, even though I probably won't receive any medications that require me to fast. Better to be prepared.
Wait for delays in previous surgeries a while, but we're finally ready. What was supposed to start at 2 is starting at 3:15. Let's get this show on the road.
Wheeled into the room and transfer to the OR bed. Oh look! There are all the implements and tools that will soon be in the crease of my left leg. This is not the time to freak out, Trish. Don't think too much about that.
Listen to the preliminary instrument and sponge counts. Kind of funny to think about. Okay, need to stop that train of thought also.
There's the pathologist from UVRMC bedside. He came up just for this. He's going to do a frozen specimen (free of charge) today to try and make up for the mishandling of the needle biopsy. I'm very impressed and touched by this guesture. We should know by the time I'm wheeled out. Very cool. I tell him I'm 99% sure it's nodular, sclerosing Hodgkins lymphoma, but I need his stamp of authenticity on it before we can proceed with any kind of treatment plan.
Surgery starts, and goes on and on and on. Apparently, my body doesn't like the idea of letting go of its lymph nodes. Of course not! Its plan is to fill each one with cancer, multiple times, so we're totally messing with its diabolical plan today.
The procedure doesn't really hurt. There's a lot of pulling and tugging. At one point, there's a sudden, stabbing, knife-life pain. More lidocaine, please. Ahhhh. Back to waiting. It is freezing cold in this room. Oh well. Dr. Jennifer is great to talk to me and let me know what's going on. Very unusual for a surgeon!
After about 30 minutes, when I can tell things are more intense than they originally planned for, I yell out, "I'm doing great, but this is a lot longer than we all originally anticipated. How are you guys doing?" Everything is great. They almost have it out and can start closing. Cool. It would be cool to watch. Maybe I should work on that aspect if there's ever a next time.
They show me the sample. It's about the size of a slightly mishapen ping pong ball, with a hook-like shape coming off one end. Wow! Bigger than I anticipated. No stitches that need to be removed, just Dermabond that should stay clean and dry for about seven days.
About 30 minutes later, I'm unhooked, undraped, and transferred to a gurney and wheeled into "Recovery." From what? Can I get a drink immediately? Yes, and I can start dressing too. Great.
The pathologist comes in. Oh crud. He looks concerned and tries to make small talk, but I'm in no mood to dally today. I impolitely interrupt. Look, the only bad news you can give me today is that you can't make a definitive diagnosis or there wasn't enough to test. No, he has the diagnosis. It's exactly what we suspected. He feels very comfortable after comparing slides to make a diagnosis, but the full report should be available on Monday.
Let me go home, please! No activity or diet restrictions. Just a three-inch scar safely tucked into the crease of my left leg.
Thursday, June 23, 2011
Tomorrow we should have the results of both the needle biopsy and the PET scan. Should be a quiet day at work.
What's this? I've got four missed calls between my cell phone and work phone. That will teach me to attend a 30-minute meeting.
It's Dr. Wendy? Something about messing up the specimen from the needle biopsy last Friday. They sent it through the flow process, which involves sending it to a lab in Murray and running a bunch of tests on it to see what grows or develops. That's exactly what she wanted to prevent. We just need a comparison between the last sample they took about two and a half years ago and last Friday's. If the cells look the same, we know exactly what we're dealing with.
They tried to retrieve the specimen and deliver it back to UVRMC for the comparison, but now the samples are too destroyed from the flow process to effectively read. Now what?
She gives me her own cell number, with a promise to destroy the number.
She's talked to a surgeon, Dr. Jennifer, who has agreed to see me TODAY for surgery TOMORROW to remove part or all of one of the enlarged lymph nodes. I'm to call her office for a time and call Dr. Wendy back with the new plan.
What? Surgery tomorrow? Meet with the surgeon today? No chance of a diagnosis with the needle biopsy? Yep, I got that right.
Call the surgeon's office at 11:30. They want me there at noon. That's not going to work. Can we shoot for 1-ish instead?
Dale, how fast can you come to downtown Salt Lake and pick me up and take me back down to American Fork? You're on your way? Great.
Sorry, work. You're going to have to wait. There are scary things afoot, and I wanted it all taken care of yesterday.
Surgeon is absolutely great. Thinks the same way I do. No need to do unconsciousness or sedation if we don't need to. Let's just try a local. Should be an easy, 15-minute procedure.
I wasn't planning on surgery tomorrow, but at least we have a plan that is being quickly expedited.
Run over to the AF Hospital for precursory blood work (that's four blood draws/IVs started in 9 days--for those of us who are counting) and a quick EKG. Okay, I think I'm ready for whatever tomorrow brings.
Dale! Don't you think we should do something really amazing and fun tonight? Why's that? Because, in all likelihood, our lives will change forever tomorrow, when I go from being a two-time Hodgkins survivor to being a three-time Hodgkins survivor. Nothing we can think of seems momentous enough so we stay home and play Dr. Mario on our old Nintendo 64 console.
What's this? I've got four missed calls between my cell phone and work phone. That will teach me to attend a 30-minute meeting.
It's Dr. Wendy? Something about messing up the specimen from the needle biopsy last Friday. They sent it through the flow process, which involves sending it to a lab in Murray and running a bunch of tests on it to see what grows or develops. That's exactly what she wanted to prevent. We just need a comparison between the last sample they took about two and a half years ago and last Friday's. If the cells look the same, we know exactly what we're dealing with.
They tried to retrieve the specimen and deliver it back to UVRMC for the comparison, but now the samples are too destroyed from the flow process to effectively read. Now what?
She gives me her own cell number, with a promise to destroy the number.
She's talked to a surgeon, Dr. Jennifer, who has agreed to see me TODAY for surgery TOMORROW to remove part or all of one of the enlarged lymph nodes. I'm to call her office for a time and call Dr. Wendy back with the new plan.
What? Surgery tomorrow? Meet with the surgeon today? No chance of a diagnosis with the needle biopsy? Yep, I got that right.
Call the surgeon's office at 11:30. They want me there at noon. That's not going to work. Can we shoot for 1-ish instead?
Dale, how fast can you come to downtown Salt Lake and pick me up and take me back down to American Fork? You're on your way? Great.
Sorry, work. You're going to have to wait. There are scary things afoot, and I wanted it all taken care of yesterday.
Surgeon is absolutely great. Thinks the same way I do. No need to do unconsciousness or sedation if we don't need to. Let's just try a local. Should be an easy, 15-minute procedure.
I wasn't planning on surgery tomorrow, but at least we have a plan that is being quickly expedited.
Run over to the AF Hospital for precursory blood work (that's four blood draws/IVs started in 9 days--for those of us who are counting) and a quick EKG. Okay, I think I'm ready for whatever tomorrow brings.
Dale! Don't you think we should do something really amazing and fun tonight? Why's that? Because, in all likelihood, our lives will change forever tomorrow, when I go from being a two-time Hodgkins survivor to being a three-time Hodgkins survivor. Nothing we can think of seems momentous enough so we stay home and play Dr. Mario on our old Nintendo 64 console.
Tuesday, July 5, 2011
Wednesday, June 22, 2011
We should have preliminary reports back by now on both the PET and needle biopsy. No word yet though.
I call Dr. Wendy's office. The regular nurse at the AF office who normally tracks such things is out of the office and has been for two weeks, so I get transferred to Provo.
That nurse is overworked because she's covering two offices now, hasn't seen or heard anything, but will follow up sometime today.
More waiting. Hurry up and wait. My favorite when it comes to medical things.
I get a call late that afternoon. After some fiddling and trying different views for the same report, she finally finds that my PET scan shows involvement in only the one area. That's great news. If my cancer facts are correct, that means Stage 1, which is the easiest to treat.
No results from the biopsy. In fact, no one can really find the needle biopsy--at UVRMC or elsewhere. She promises to keep tracking it but can't offer much of an explanation.
Please, please get this figured out by Friday. I hate waiting. I hate having this overwhelming suspicion and not being able to talk about it with anyone yet.
I call Dr. Wendy's office. The regular nurse at the AF office who normally tracks such things is out of the office and has been for two weeks, so I get transferred to Provo.
That nurse is overworked because she's covering two offices now, hasn't seen or heard anything, but will follow up sometime today.
More waiting. Hurry up and wait. My favorite when it comes to medical things.
I get a call late that afternoon. After some fiddling and trying different views for the same report, she finally finds that my PET scan shows involvement in only the one area. That's great news. If my cancer facts are correct, that means Stage 1, which is the easiest to treat.
No results from the biopsy. In fact, no one can really find the needle biopsy--at UVRMC or elsewhere. She promises to keep tracking it but can't offer much of an explanation.
Please, please get this figured out by Friday. I hate waiting. I hate having this overwhelming suspicion and not being able to talk about it with anyone yet.
Monday - part two (PET scan)
So tired. Maybe that's good and I can sleep during part of the PET scan.
Head to AF Hospital on an empty stomach. Don't they have an express lane for people like me? Wait for registration. Head to radiology. Been there. Done that.
Get to start another IV. That's three times in six days, but who's counting? LOL
Drink some nasty cranberry flavored juice on an empty stomach (again!). I know it can be worse, so I'll do my part. Shoot radioactive sugar through the IV and rest in a semi dark room for at least 45 minutes. No moving, talking, texting, playing--just my brain and lots of time to think. Drat!
Cancer loves sugar, so only the cancer will react to the sugar and start digesting it. Everything else will be still and quiet and we can track where it is that way. I know the drill. This is at least my six or seventh PET scan in the last three years.
Lay absolutely still under the CT machine. PET scan takes about 30 minutes to process activity in every part of my body from skull to mid-thigh. No big deal. I could almost fall asleep in this trailer that's parked outside the south side of the hospital.
Inject the regular contrast liquid for the regular CT and wait another 10 minutes or so. All done.
What do the images look like? Most of the time, I can see what the medical personnel see and they show it to me. But I've never seen a PET image. I ask, and I'm shown the computer monitor.
Interesting. The only thing that I notice is a bright orange sphere at the top of my left leg where one shouldn't be. I don't really know what I'm looking at or what it should look like, but no other spheres seems like a good thing.
Only about four and half hours gone. Time to go home and work from home the rest of the day.
And hurry and wait for the results.
Head to AF Hospital on an empty stomach. Don't they have an express lane for people like me? Wait for registration. Head to radiology. Been there. Done that.
Get to start another IV. That's three times in six days, but who's counting? LOL
Drink some nasty cranberry flavored juice on an empty stomach (again!). I know it can be worse, so I'll do my part. Shoot radioactive sugar through the IV and rest in a semi dark room for at least 45 minutes. No moving, talking, texting, playing--just my brain and lots of time to think. Drat!
Cancer loves sugar, so only the cancer will react to the sugar and start digesting it. Everything else will be still and quiet and we can track where it is that way. I know the drill. This is at least my six or seventh PET scan in the last three years.
Lay absolutely still under the CT machine. PET scan takes about 30 minutes to process activity in every part of my body from skull to mid-thigh. No big deal. I could almost fall asleep in this trailer that's parked outside the south side of the hospital.
Inject the regular contrast liquid for the regular CT and wait another 10 minutes or so. All done.
What do the images look like? Most of the time, I can see what the medical personnel see and they show it to me. But I've never seen a PET image. I ask, and I'm shown the computer monitor.
Interesting. The only thing that I notice is a bright orange sphere at the top of my left leg where one shouldn't be. I don't really know what I'm looking at or what it should look like, but no other spheres seems like a good thing.
Only about four and half hours gone. Time to go home and work from home the rest of the day.
And hurry and wait for the results.
Monday, June 20, 2011
It's 3:30 a.m., and I can't sleep. Maybe a little stressed about what today's scan will find? Maybe! I know I can wake Dale up, but he needs his sleep too. And I need him at his best so he can help me. That sounds selfish, but it's true.
Shall I read? Watch a movie? Let me quickly scan through the TV channels and see if anything catches my eye. What's this? Some strange commercial about a man named Mike walking through a wooded path. It's beautiful. It's so ethereal.
He starts talking about Hodgkins lymphoma. What? Wait a minute. Am I dreaming this? Surely, my mind is starting to play tricks on me. No, there is the official seal of the Leukemia and Lymphoma Society.
Okay, okay. I get the reminder, Heavenly Father. You are aware of me, my struggles, my fears. You know which random TV station I'll be watching at 3:30 in the morning and know that I need a reminder that I'm not alone.
Some random Hodgkins facts to throw at you:
* Hodgkins lymphoma is rare. Only 8,500 people are diagnosed each year. It makes up less than 1% of all cancers. Sure! And Sis. Terry and Mike just happen to be coincidentally talking about it where I can see and hear them. NOT!
* It's also one of the very most curable cancers in the world. About a 97% cure rate overall. Not bad odds. I'll take those. If I have to keep getting cancer, I'll take Hodgkins, thanks.
* There are four types of Hodgkins. I have the most common: nodular (think lumps), sclerosing (think hard lumps) Hodgkins lymphoma, which is also the easiest to treat.
* Hodgkins has the lowest recurrence rate of most cancers also. My case is pretty rare. If I had gotten other cancers (leukemia or breat) from the treatments I received as a child, it would be more understandable. But my body loves this stuff. I've heard Dr. Wendy say it must be genetically encoded in my DNA. Lovely!
* More men than women get it. And more children or people over 60 get it than those in middle years.
What am I supposed to learn from this curable, non-recurring thing that doesn't usually affect the middle aged that keeps coming back with me? Thanks for the thought, Jen, that maybe it's not me that needs to learn this time. That gives me some hope. Maybe I'm not as dumb as I feel right now. Try to sleep, Trish.
Shall I read? Watch a movie? Let me quickly scan through the TV channels and see if anything catches my eye. What's this? Some strange commercial about a man named Mike walking through a wooded path. It's beautiful. It's so ethereal.
He starts talking about Hodgkins lymphoma. What? Wait a minute. Am I dreaming this? Surely, my mind is starting to play tricks on me. No, there is the official seal of the Leukemia and Lymphoma Society.
Okay, okay. I get the reminder, Heavenly Father. You are aware of me, my struggles, my fears. You know which random TV station I'll be watching at 3:30 in the morning and know that I need a reminder that I'm not alone.
Some random Hodgkins facts to throw at you:
* Hodgkins lymphoma is rare. Only 8,500 people are diagnosed each year. It makes up less than 1% of all cancers. Sure! And Sis. Terry and Mike just happen to be coincidentally talking about it where I can see and hear them. NOT!
* It's also one of the very most curable cancers in the world. About a 97% cure rate overall. Not bad odds. I'll take those. If I have to keep getting cancer, I'll take Hodgkins, thanks.
* There are four types of Hodgkins. I have the most common: nodular (think lumps), sclerosing (think hard lumps) Hodgkins lymphoma, which is also the easiest to treat.
* Hodgkins has the lowest recurrence rate of most cancers also. My case is pretty rare. If I had gotten other cancers (leukemia or breat) from the treatments I received as a child, it would be more understandable. But my body loves this stuff. I've heard Dr. Wendy say it must be genetically encoded in my DNA. Lovely!
* More men than women get it. And more children or people over 60 get it than those in middle years.
What am I supposed to learn from this curable, non-recurring thing that doesn't usually affect the middle aged that keeps coming back with me? Thanks for the thought, Jen, that maybe it's not me that needs to learn this time. That gives me some hope. Maybe I'm not as dumb as I feel right now. Try to sleep, Trish.
Sunday, June 19, 2011
This is not going to be a fun day.
Happy Father's Day, beloved companion. I hope you know how much I love you without an outward display. I haven't had time with all the medical things to plan a proper celebration for you. I promise I'll make it up to you in. . .two weeks? Oh good.
It's not like I want to keep everything secret from everyone else. But how do you retract the C word once it's out there? We don't have the final diagnosis yet, even though Dale received his own confirmation. There's just no way I want to walk around to my friends and neighbors saying, "Just kidding."
So, brave face day, Trish. You can melt down a little while playing the Sacrament Hymn and look at Dale and see him melting too. It's okay. No one really knows why. You can do this.
Oh and a wonderful lesson in Sunday School about walking in each other's shoes. Well, no one wants my shoes. That's for sure! But Christ has walked in mine. He's felt everything: the fear, the abject terror, the loneliness--all of it! It's true. I know that intellectually and even on a deeper level. I'm just having a hard time connecting to it emotionally today.
I believe Sis. Terry served her mission in Lansing, Michigan partly just for me--so I would know that Heavenly Father knows that even that detail some twenty years ago or so was thought of and would bring me comfort that He knows and He's there. I'm not alone. Coincidence? I think not.
Maybe I'm in denial. Maybe I'm just scared. I'm not sure. This just seems huge and overwhelming. Sure, given my history, I kind of expected Hodgkins to come back. It really seems to like my body, but I thought I'd have another 30 years or so. Time to grow again, Trish.
Now I get to teach Relief Society. Thankfully, it's an easy and safe subject, Talents. I know there are lots of women who feel like they have none, but that's garbage. The talents I've appreciated most in my life are those that aren't seen physically but are felt or applied differently: humor, feeling love, an understanding ear and heart. If I can get that point across while holding other emotions in check, I will have succeeded.
Happy Father's Day, beloved companion. I hope you know how much I love you without an outward display. I haven't had time with all the medical things to plan a proper celebration for you. I promise I'll make it up to you in. . .two weeks? Oh good.
It's not like I want to keep everything secret from everyone else. But how do you retract the C word once it's out there? We don't have the final diagnosis yet, even though Dale received his own confirmation. There's just no way I want to walk around to my friends and neighbors saying, "Just kidding."
So, brave face day, Trish. You can melt down a little while playing the Sacrament Hymn and look at Dale and see him melting too. It's okay. No one really knows why. You can do this.
Oh and a wonderful lesson in Sunday School about walking in each other's shoes. Well, no one wants my shoes. That's for sure! But Christ has walked in mine. He's felt everything: the fear, the abject terror, the loneliness--all of it! It's true. I know that intellectually and even on a deeper level. I'm just having a hard time connecting to it emotionally today.
I believe Sis. Terry served her mission in Lansing, Michigan partly just for me--so I would know that Heavenly Father knows that even that detail some twenty years ago or so was thought of and would bring me comfort that He knows and He's there. I'm not alone. Coincidence? I think not.
Maybe I'm in denial. Maybe I'm just scared. I'm not sure. This just seems huge and overwhelming. Sure, given my history, I kind of expected Hodgkins to come back. It really seems to like my body, but I thought I'd have another 30 years or so. Time to grow again, Trish.
Now I get to teach Relief Society. Thankfully, it's an easy and safe subject, Talents. I know there are lots of women who feel like they have none, but that's garbage. The talents I've appreciated most in my life are those that aren't seen physically but are felt or applied differently: humor, feeling love, an understanding ear and heart. If I can get that point across while holding other emotions in check, I will have succeeded.
Monday, July 4, 2011
Saturday, June 18, 2011
No medicine things today. A chance to get away and forget what my body is going through and has in store. It's a Relief Society retreat up the canyon. It's been planned for months, and I'm excited to go and forget. No mention of the C word today.
Lovely ride up the canyon with new friends. The water is really boiling on its mad dash down the mountain. Fun to watch.
Whoops! There's one of my best friends standing at the side of the road. I'm almost in tears just looking at you, Cindy. You were close for the last go around. You know of my concerns and fears right now. Just keep it together, Trish. Let's pretend for one day that things are okay again in the world.
Great lunch. Fun break-the-ice games. Find someone who is as tall as you. What? Never mind. Stupid games that are prejudiced against short people! Don't tell my family, but I had the nurse measure my height to prove that I'm really 5'0" tall. Huh! Guess again. 4'11.5"--nice try!
Classes on easy meals and personal scripture study plan (needed that one!). Zip line activity. Watched most of that one. Not brave enough to try or too concerned that I would be the one that would get hurt on the thing. Took lots of fun pictures of others doing it though. And got to try the brake position once. Good thing it was only once. Probably would have broken something on that too.
Back massages and chances to help with humanitarian projects. Great dinner. Ahhhh. I needed this break.
Special guest speaker, Colleen Terry who's spoke at Women's Conference and is an Institute teacher at UVU. Could be fun.
Oooh, she is fun. Served a mission in the Lansing, Michigan Mission--where I grew up. Interesting. Oh, and look. She tilts her head to the side and talks in exaggerated voices while telling stories. Just like me. I already like her and feel that we're very similar in some ways.
She's talking about trials and challenges, and I'm starting to feel like an emotional wreck. What aren't I learning about such things? What could a third round of cancer teach me? And why does it take me three times to learn these lessons?
Interesting. Colleen's telling about finding a lump under her collarbone. Hey! I know what that is--probably. She doesn't think it's anything; forgets to call for the results until her sister makes her promise to do so. I know what it is even before she says the words. I just don't want to hear them out loud. "Hodgkins lymphoma." I lose it. There it is. My diagnosis as well.
Thank you, Jennifer, for being there, right at my side. I collapse into you, sobbing and trying in vain to still the fears of my heart as Sis. Terry continues on about how individualized our challenges are, how they're a sign that we're ready to grow more. But what if I don't want to grow? What if I don't think I can do it again? I can handle chemo. I know that; know what to expect. But there's already been talk of a bone marrow transplant this time, and that terrifies me.
I know Heavenly Father and Jesus Christ live. I know He and His son love me. I know the Spirit brings great peace and comfort. I've had those witnesses numerous times, so why is this time so scary and why do I feel so far away from them? It feels like there's very little hope in the world right now.
Darn! So much for a break today.
Lovely ride up the canyon with new friends. The water is really boiling on its mad dash down the mountain. Fun to watch.
Whoops! There's one of my best friends standing at the side of the road. I'm almost in tears just looking at you, Cindy. You were close for the last go around. You know of my concerns and fears right now. Just keep it together, Trish. Let's pretend for one day that things are okay again in the world.
Great lunch. Fun break-the-ice games. Find someone who is as tall as you. What? Never mind. Stupid games that are prejudiced against short people! Don't tell my family, but I had the nurse measure my height to prove that I'm really 5'0" tall. Huh! Guess again. 4'11.5"--nice try!
Classes on easy meals and personal scripture study plan (needed that one!). Zip line activity. Watched most of that one. Not brave enough to try or too concerned that I would be the one that would get hurt on the thing. Took lots of fun pictures of others doing it though. And got to try the brake position once. Good thing it was only once. Probably would have broken something on that too.
Back massages and chances to help with humanitarian projects. Great dinner. Ahhhh. I needed this break.
Special guest speaker, Colleen Terry who's spoke at Women's Conference and is an Institute teacher at UVU. Could be fun.
Oooh, she is fun. Served a mission in the Lansing, Michigan Mission--where I grew up. Interesting. Oh, and look. She tilts her head to the side and talks in exaggerated voices while telling stories. Just like me. I already like her and feel that we're very similar in some ways.
She's talking about trials and challenges, and I'm starting to feel like an emotional wreck. What aren't I learning about such things? What could a third round of cancer teach me? And why does it take me three times to learn these lessons?
Interesting. Colleen's telling about finding a lump under her collarbone. Hey! I know what that is--probably. She doesn't think it's anything; forgets to call for the results until her sister makes her promise to do so. I know what it is even before she says the words. I just don't want to hear them out loud. "Hodgkins lymphoma." I lose it. There it is. My diagnosis as well.
Thank you, Jennifer, for being there, right at my side. I collapse into you, sobbing and trying in vain to still the fears of my heart as Sis. Terry continues on about how individualized our challenges are, how they're a sign that we're ready to grow more. But what if I don't want to grow? What if I don't think I can do it again? I can handle chemo. I know that; know what to expect. But there's already been talk of a bone marrow transplant this time, and that terrifies me.
I know Heavenly Father and Jesus Christ live. I know He and His son love me. I know the Spirit brings great peace and comfort. I've had those witnesses numerous times, so why is this time so scary and why do I feel so far away from them? It feels like there's very little hope in the world right now.
Darn! So much for a break today.
Friday, June 17, 2011
No use heading to work today. Need to be available for when Dr. Wendy's office calls.
Calls FINALLY come at 9:30 or 10. Why does that time seem so late in the day? Can I come in to the office at 11-ish? Of course. Dale, where are you? You're definitely coming with me for this one. I need you.
Hey, Dr. Wendy. We've got to stop meeting like this? Really? We couldn't have taken care of this on Wednesday? Maybe they developed overnight, but not likely. I have no idea how long those nodes have been there. Less than nine months or the last scan would have caught them though.
Okay, so we need a full-body PET and CT scan and a needle biopsy. How soon can those be scheduled? Might as well hang out in the scheduler's office to see how to expedite things. Yes, I've taken baby aspirin in the last 24-hours, but it won't affect the biopsy. I'm sure of it. I need this to happen quickly. I cannot wait five days or longer and maintain any sort of sanity. Luckily, they believe me and agree to schedule the biopsy for that afternoon.
UVRMC. Radiology department. Here we go again. This is where the needle biopsy of my stomach happened for the last diagnosis. Dr. Wendy and at least one pathologist have a direct conversation about me and what needs to happen. Hopefully, we're eliminating any chance for lab screw ups. Two hours of waiting around, and we're finally ready.
Start the IV. Second blood draw/IV starting in three days. Am I going for some kind of record?
No, don't give me any sedation. Why would I want more chemicals in my body that I don't need? No, I'm not trying to take your job, nurse Richard. I want you there. I want your drugs available, in case I'm not as brave as I think I am. Really! It gives me great comfort that you're there and I can ask if I need it. Yes, I've had an empty stomach for the past four hours.
How do we process this sample? I don't know. Oh, flow cytology? Okay. You guys know what you're doing.
Brief CT scan of the area to see what we're dealing with. Yup, at least three lumps there, all in the same lymph string, one larger than the others. I can see them, little black spots on the monitor.
Are you kidding? That was it? A brief stab and a slight, burning sensation? Yeah, definitely not worth 30 minutes to an hour of recovery time. We're good. You got four or five samples, I can see them swimming around in a cytology fluid like little red caterpillars.
I'm free to go.
PET scan on Monday morning.
Calls FINALLY come at 9:30 or 10. Why does that time seem so late in the day? Can I come in to the office at 11-ish? Of course. Dale, where are you? You're definitely coming with me for this one. I need you.
Hey, Dr. Wendy. We've got to stop meeting like this? Really? We couldn't have taken care of this on Wednesday? Maybe they developed overnight, but not likely. I have no idea how long those nodes have been there. Less than nine months or the last scan would have caught them though.
Okay, so we need a full-body PET and CT scan and a needle biopsy. How soon can those be scheduled? Might as well hang out in the scheduler's office to see how to expedite things. Yes, I've taken baby aspirin in the last 24-hours, but it won't affect the biopsy. I'm sure of it. I need this to happen quickly. I cannot wait five days or longer and maintain any sort of sanity. Luckily, they believe me and agree to schedule the biopsy for that afternoon.
UVRMC. Radiology department. Here we go again. This is where the needle biopsy of my stomach happened for the last diagnosis. Dr. Wendy and at least one pathologist have a direct conversation about me and what needs to happen. Hopefully, we're eliminating any chance for lab screw ups. Two hours of waiting around, and we're finally ready.
Start the IV. Second blood draw/IV starting in three days. Am I going for some kind of record?
No, don't give me any sedation. Why would I want more chemicals in my body that I don't need? No, I'm not trying to take your job, nurse Richard. I want you there. I want your drugs available, in case I'm not as brave as I think I am. Really! It gives me great comfort that you're there and I can ask if I need it. Yes, I've had an empty stomach for the past four hours.
How do we process this sample? I don't know. Oh, flow cytology? Okay. You guys know what you're doing.
Brief CT scan of the area to see what we're dealing with. Yup, at least three lumps there, all in the same lymph string, one larger than the others. I can see them, little black spots on the monitor.
Are you kidding? That was it? A brief stab and a slight, burning sensation? Yeah, definitely not worth 30 minutes to an hour of recovery time. We're good. You got four or five samples, I can see them swimming around in a cytology fluid like little red caterpillars.
I'm free to go.
PET scan on Monday morning.
Thursday, June 16, 2011
I go to work, but something keeps nagging me in the back of my mind. Oh yeah. I got to have someone look at those lumps. I'd love for someone to say, "Yup. Here's your hypochondriac sign. Don't worry."
A few phone calls confirm that both doctors are out of the office today. Now what are my choices? Urgent care? Walk into urgent care and say, "I'm worried because I think I have cancer again"? That doesn't seem the best circumstance, but there's nothing else to do really.
Okay. Fine. I call Dale and he picks me up from work about 3:00 p.m. in Salt Lake (rode the bus in that day). We drive to our urgent care facility in Lindon. That place has been so good to me, but I really don't want to go. I feel completely stupid. I just saw Dr. Wendy yesterday. Why am I seeing another doctor today?
Thank you, receptionist, for not asking me why I'm visiting today. Just take my name and insurance information and let me wait for a few minutes. I don't want to say the C word out loud.
Oh look! There's Randy, resident PA. How many times have I seen him here? Too many! And here we go again. Someone comes through the door. Not Randy though. Dr. Curtis? Oh, Randy had car trouble and will be back later. Okay.
Yes, why am I here? That word I'm dreading is said out loud, giving more credence to my concern. "I'm worried that I might have cancer again." There! Said it. Happy now? Darn. He's not patting my hand and telling me it's okay. No, he looks concerned.
Why would I think that? Because I have itchy skin and, what I think are, enlarged lymph nodes. After pushing and feeling around, he asks when my last blood work was, has his staff make a few calls to Dr. Wendy's office. He's concerned and tells me I have a legitimate concern also. He has a copy of Wednesday's blood work, and the white blood cells are elevated. He wishes they were in normal level--one less sign to worry about.
Crud! Where's my sign? Just give me my sign and reassurance, and I'll be on my happy way. Alas! Not today. They are enlarged lymph nodes. With the itchy skin and elevated blood levels, he feels I have three strikes.
Next step? Someone from Dr. Wendy's office will call me tomorrow, now that they know I'm not just making this stuff up. Crud!
Well, I have other tools at my disposal also. Dale and Brother Matt give me a blessing. Strength, Health, and Courage. Why do I feel like I'm completely running on empty on all three areas right now? Any other impressions? Dale now knows it's Hodgkins lymphoma. Great. Time to wait for the final diagnosis so we can start the fun again.
A few phone calls confirm that both doctors are out of the office today. Now what are my choices? Urgent care? Walk into urgent care and say, "I'm worried because I think I have cancer again"? That doesn't seem the best circumstance, but there's nothing else to do really.
Okay. Fine. I call Dale and he picks me up from work about 3:00 p.m. in Salt Lake (rode the bus in that day). We drive to our urgent care facility in Lindon. That place has been so good to me, but I really don't want to go. I feel completely stupid. I just saw Dr. Wendy yesterday. Why am I seeing another doctor today?
Thank you, receptionist, for not asking me why I'm visiting today. Just take my name and insurance information and let me wait for a few minutes. I don't want to say the C word out loud.
Oh look! There's Randy, resident PA. How many times have I seen him here? Too many! And here we go again. Someone comes through the door. Not Randy though. Dr. Curtis? Oh, Randy had car trouble and will be back later. Okay.
Yes, why am I here? That word I'm dreading is said out loud, giving more credence to my concern. "I'm worried that I might have cancer again." There! Said it. Happy now? Darn. He's not patting my hand and telling me it's okay. No, he looks concerned.
Why would I think that? Because I have itchy skin and, what I think are, enlarged lymph nodes. After pushing and feeling around, he asks when my last blood work was, has his staff make a few calls to Dr. Wendy's office. He's concerned and tells me I have a legitimate concern also. He has a copy of Wednesday's blood work, and the white blood cells are elevated. He wishes they were in normal level--one less sign to worry about.
Crud! Where's my sign? Just give me my sign and reassurance, and I'll be on my happy way. Alas! Not today. They are enlarged lymph nodes. With the itchy skin and elevated blood levels, he feels I have three strikes.
Next step? Someone from Dr. Wendy's office will call me tomorrow, now that they know I'm not just making this stuff up. Crud!
Well, I have other tools at my disposal also. Dale and Brother Matt give me a blessing. Strength, Health, and Courage. Why do I feel like I'm completely running on empty on all three areas right now? Any other impressions? Dale now knows it's Hodgkins lymphoma. Great. Time to wait for the final diagnosis so we can start the fun again.
Wednesday, June 15, 2011
Two years and three months in remission and time for another check up with Dr. Wendy.
Any lumps or enlarged lymph nodes? No. Huh. That's odd. You've never asked that question before. Oh well. Any symptoms or complaints? Just incredibly itchy skin, random, all over my body, which seems to be getting worse. Hmmm. A classic sign of Hodgkins lymphoma for my body. Am I worried? No. I'm due for another full-body PET scan in September. Shall we just wait for then to see if anything turns up? Sounds great. I can live with that plan.
Draw blood. Easy appointment. Yay! Still a two-time Hodgkins lymphoma survivor. Take that, stupid cancer stuff.
I'm at home that night. It's 8 p.m. or so, and I accidentally bump the corner of our bathroom vanity with my left leg. Hey! That hurts more than you would think. Hey! Something feels like a large lump or maybe three lumps? How in the world did I find that? I can't recreate bumping that spot again.
Uh oh. This probably isn't good. But I can't do anything about it now. And I think Dr. Wendy and my primary care physician are both out of the office tomorrow. Hmmm. Probably should get that checked out.
Right before falling asleep, I tell Dale. "Found some lumps, hon. Feel this." He doesn't seem worried, so maybe I don't need to be either. Whew!
Any lumps or enlarged lymph nodes? No. Huh. That's odd. You've never asked that question before. Oh well. Any symptoms or complaints? Just incredibly itchy skin, random, all over my body, which seems to be getting worse. Hmmm. A classic sign of Hodgkins lymphoma for my body. Am I worried? No. I'm due for another full-body PET scan in September. Shall we just wait for then to see if anything turns up? Sounds great. I can live with that plan.
Draw blood. Easy appointment. Yay! Still a two-time Hodgkins lymphoma survivor. Take that, stupid cancer stuff.
I'm at home that night. It's 8 p.m. or so, and I accidentally bump the corner of our bathroom vanity with my left leg. Hey! That hurts more than you would think. Hey! Something feels like a large lump or maybe three lumps? How in the world did I find that? I can't recreate bumping that spot again.
Uh oh. This probably isn't good. But I can't do anything about it now. And I think Dr. Wendy and my primary care physician are both out of the office tomorrow. Hmmm. Probably should get that checked out.
Right before falling asleep, I tell Dale. "Found some lumps, hon. Feel this." He doesn't seem worried, so maybe I don't need to be either. Whew!
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