I guess it's good to be at the point where you're bored in the hospital. It means you can't be feeling too bad, right?
I texted some of my teenage nieces and nephews for their best advice of what to try that's fun while I'm here. Their best tips include the following suggestions:
* Flirt with the staff (Karli).
* Watch all of the Star Wars movies in order (Clark).
* Plan a quest to find the Holy Grail (Chris).
* Time the nurses to see which animal sounds or accents they respond fastest to (Jessica).
* Build sculptures out of the toilet paper rolls and macaroni and cheese to sell on eBay.
Good thing I have my sisters (my personal entertainment committee) and my nieces and nephews to add some levity and fun to this experience!
Purple Everywhere
Daily Herald picture
Monday, August 29, 2011
Saturday, August 27, 2011
Friday, August 26, 2011
It's day 0, which means it's the first transplant day. According to all of the workers, it also makes it my birthday or my rebirthday as we rebirth these stem cells back into my marrow.
Happy Birthday to me! Happy Birthday to me! The nurses have written it on my board and say it to me as I pass them on walks in the hallways.
The process goes pretty well. It takes one guy from the U of U reaching in a liquid nitrogen container to pull out a case of stored cells. Each case then contains about five bags of frozen cells. He warms each bag of cells in a water bath (like an immersion circulator for all of you who have ever watched Iron Chef America) to unfreeze them as we're ready for them.
He then hands off each bag to a nurse who skillfully has to set up each bag to drip properly into my veins and makes sure that every last drop is flushed from those tiny bags.
I expected the color of the cells to look like an ordinary deep red blood color. Instead, they look pink, like the color of cherry gelatin powder. Interesting.
What's also interesting is the smell associated with the stored cells. They preserve them in DMSO, which smells like a cross between garlic and creamed corn. I can't smell it, but Dale can. And one nurse that we passed in the hall asked if I'd gotten stem cells today. When I replied in the affirmative, she said she knew because she could smell them. Weird!
The only other strange thing was that my blood pressure decided to drop off towards the end of the transplant--80/33. So they lowered the head of my bed, raised my feet, and started running more fluids through my line. It worked. About 30 minutes later, I felt back to normal.
So how many people does it take to do a stem cell transplant? Two for about three hours each. My nurse, my favorite nurse, didn't even get to eat lunch until after 2:30 and she's allergic to the DMSO, so she was really itching to get out of my room.
We'll repeat the whole process again on Saturday, and that will give my body over 9 million stem cells to work with and rebuild with.
Happy Birthday to me! Happy Birthday to me! The nurses have written it on my board and say it to me as I pass them on walks in the hallways.
The process goes pretty well. It takes one guy from the U of U reaching in a liquid nitrogen container to pull out a case of stored cells. Each case then contains about five bags of frozen cells. He warms each bag of cells in a water bath (like an immersion circulator for all of you who have ever watched Iron Chef America) to unfreeze them as we're ready for them.
He then hands off each bag to a nurse who skillfully has to set up each bag to drip properly into my veins and makes sure that every last drop is flushed from those tiny bags.
I expected the color of the cells to look like an ordinary deep red blood color. Instead, they look pink, like the color of cherry gelatin powder. Interesting.
What's also interesting is the smell associated with the stored cells. They preserve them in DMSO, which smells like a cross between garlic and creamed corn. I can't smell it, but Dale can. And one nurse that we passed in the hall asked if I'd gotten stem cells today. When I replied in the affirmative, she said she knew because she could smell them. Weird!
The only other strange thing was that my blood pressure decided to drop off towards the end of the transplant--80/33. So they lowered the head of my bed, raised my feet, and started running more fluids through my line. It worked. About 30 minutes later, I felt back to normal.
So how many people does it take to do a stem cell transplant? Two for about three hours each. My nurse, my favorite nurse, didn't even get to eat lunch until after 2:30 and she's allergic to the DMSO, so she was really itching to get out of my room.
We'll repeat the whole process again on Saturday, and that will give my body over 9 million stem cells to work with and rebuild with.
Wednesday, August 24, 2011
Wednesday, August 24, 2011
T - 2 days!
Last day for chemo, and it's Melphalan--one of the strongest chemo drugs I've ever had.
The worst side known side effect? Mouth sores or mucositis, large white sores in your mouth, on your tongue and gums, down your esophagus, and into your stomach. They make eating almost impossible and are often the cause for people to be fed intravenously while getting a bone marrow transplant.
There is hope, however! The smart folks at LDS Hospital have figured out that if your mouth is cold for a few minutes before Melphalan is infused into your body and for 30 minutes afterwards, the mouth sores are significantly reduced in number, duration, and intensity.
What does that mean to me? I get to eat popsicles, only the grape ones, for about an hour while Melphalan drips into my veins through my central line.
7.5 popsicles and slightly under an hour later, and I can finally quit shivering and keeping my mouth as cold as it can stand.
Now, when I open my mouth, my tongue is almost black with all of those artificial dyes and so are my gums and around my teeth. It's quite the affect for Halloween!
But aren't those artificial colors known to cause cancer? My sister, Tress, reminds me that those statements are effective only for California, so I'm okay hanging out in Utah. :-)
Last day for chemo, and it's Melphalan--one of the strongest chemo drugs I've ever had.
The worst side known side effect? Mouth sores or mucositis, large white sores in your mouth, on your tongue and gums, down your esophagus, and into your stomach. They make eating almost impossible and are often the cause for people to be fed intravenously while getting a bone marrow transplant.
There is hope, however! The smart folks at LDS Hospital have figured out that if your mouth is cold for a few minutes before Melphalan is infused into your body and for 30 minutes afterwards, the mouth sores are significantly reduced in number, duration, and intensity.
What does that mean to me? I get to eat popsicles, only the grape ones, for about an hour while Melphalan drips into my veins through my central line.
7.5 popsicles and slightly under an hour later, and I can finally quit shivering and keeping my mouth as cold as it can stand.
Now, when I open my mouth, my tongue is almost black with all of those artificial dyes and so are my gums and around my teeth. It's quite the affect for Halloween!
But aren't those artificial colors known to cause cancer? My sister, Tress, reminds me that those statements are effective only for California, so I'm okay hanging out in Utah. :-)
Tuesday, August 23, 2011
Tuesday, August 23, 2011
T - 3 days and counting.
Dr. Petersen, the director of the bone marrow team, stopped by on rounds to see me today. And left me breathless.
After a quick check, he said, "You're looking good and sounding good. One more day of chemo tomorrow, then no more chemo forever."
No more chemo forever? What kind of world is that? Chemo has been part of my world since I was 7 years old. I almost cried with delusional joy at the thought.
No more MOPP, CCNU, ADV, ICE, BEAM, or any other kind of chemo?
That's what I'm working towards. That's my goal. NO MORE CHEMO FOREVER!
Dr. Petersen, the director of the bone marrow team, stopped by on rounds to see me today. And left me breathless.
After a quick check, he said, "You're looking good and sounding good. One more day of chemo tomorrow, then no more chemo forever."
No more chemo forever? What kind of world is that? Chemo has been part of my world since I was 7 years old. I almost cried with delusional joy at the thought.
No more MOPP, CCNU, ADV, ICE, BEAM, or any other kind of chemo?
That's what I'm working towards. That's my goal. NO MORE CHEMO FOREVER!
Monday, August 22, 2011
Sunday, August 21, 2011
T -5 day.
Part of the LDS branch here at the hospital comes to bless the Sacrament for me. I can't go down to the services. Too many germs. And they can't kneel on my floor because that would leave more germs behind, but they're very kind to come and help me feel at least that connection to the Sabbath.
A nurse tells me about one guy who cleaned everything in his house for the two weeks preceeding his admission--dusted, cleaned out the fish tank, groomed his dog, etc. By the time he got to the hospital, his system was so overloaded with dust, viruses, bacteria, and molds, that he didn't survive the transplant. Darn! I cleaned out our computer hard drive before I was admitted, but I don't think there's too many germs associated with that activity.
So get this. They want me to walk 20 minutes a day, three different times a day. Doesn't sound too bad, does it? I try to walk a minimum of 30 minutes a day at home on the treadmill, so it sounds like a pretty easy goal. Huh! So give the girl whose lungs don't want to cooperate all these extra parameters to deal with. First, chemo that is known to make you dizzy and uncordinated. Try concentrate on breathing and walking straight now. Second, a pig mask that is thick and heavy and cuts off almost all outside air. Now, try to breathe while you walk! Third, add pulling an IV pole for an extra load for your lungs to deal with. Even when they add oxygen under the pig mask, now I have to lug the portable oxygen tank also on these daily excursions. Whew! I can't wait until the 20 minutes is over each time. I think I'll ask about maybe using the portable stationary bikes they have instead.
Oh, and it's not just one dose of chemo every day. Days 2-5 are 1 hour of chemo (Ara-C) in the morning around 9:00 a.m. Then Etoposide about 4:00 p.m. Then another dose of Ara-C in the evening--around 9:00 a.m. It's triple chemo time for me!
Although Dale and I are surprised how well I feel. We both thought at this point in the game I'd be much sicker. Hooray!
Part of the LDS branch here at the hospital comes to bless the Sacrament for me. I can't go down to the services. Too many germs. And they can't kneel on my floor because that would leave more germs behind, but they're very kind to come and help me feel at least that connection to the Sabbath.
A nurse tells me about one guy who cleaned everything in his house for the two weeks preceeding his admission--dusted, cleaned out the fish tank, groomed his dog, etc. By the time he got to the hospital, his system was so overloaded with dust, viruses, bacteria, and molds, that he didn't survive the transplant. Darn! I cleaned out our computer hard drive before I was admitted, but I don't think there's too many germs associated with that activity.
So get this. They want me to walk 20 minutes a day, three different times a day. Doesn't sound too bad, does it? I try to walk a minimum of 30 minutes a day at home on the treadmill, so it sounds like a pretty easy goal. Huh! So give the girl whose lungs don't want to cooperate all these extra parameters to deal with. First, chemo that is known to make you dizzy and uncordinated. Try concentrate on breathing and walking straight now. Second, a pig mask that is thick and heavy and cuts off almost all outside air. Now, try to breathe while you walk! Third, add pulling an IV pole for an extra load for your lungs to deal with. Even when they add oxygen under the pig mask, now I have to lug the portable oxygen tank also on these daily excursions. Whew! I can't wait until the 20 minutes is over each time. I think I'll ask about maybe using the portable stationary bikes they have instead.
Oh, and it's not just one dose of chemo every day. Days 2-5 are 1 hour of chemo (Ara-C) in the morning around 9:00 a.m. Then Etoposide about 4:00 p.m. Then another dose of Ara-C in the evening--around 9:00 a.m. It's triple chemo time for me!
Although Dale and I are surprised how well I feel. We both thought at this point in the game I'd be much sicker. Hooray!
Friday, August 19, 2011
Early arrival at LDS Hospital--7:00 a.m. Dale and I are the first people back in the Radiology nursing department, so it's quiet--except for one nurse who cannot keep from laughing loudly at almost everything. It's funny to hear such boisterous noises when we woke up at 5:30 to come, but it's better than the unusally sterile quietness that pervades most hospitals.
The central line placement goes very well. And Meredith, the PA who places it, tells me that I'm her best patient ever--male or female. I opt for no sedation (of course!) and she says I'm only her third patient without sedation. The first was a pregnant mom and sedation would damage her baby. The second was a macho rock climber who cried the moment they brought him back into the procedure room. She said the pain isn't too bad but most people cringe when they know what all the tugging and pulling means and that's when they freak out. Not me.
They move me from the procedure table to my own bed to keep me sitting up while they pull the port. Once again, fairly easy and we're on our way for another chest x-ray, then admission to the 8th floor.
They warned me that half of the rooms on the East 8th side face a building with a lovely view of a cement wall. Sure enough, that's my room. It feels like I'm in prison, and I immediately start negotiating for a room with a view. I might have to wait a day for it, but I'm okay with that. I just can't handle 28 days or so in a prison room.
It seems no one was really prepared for me to come today, at least on the floor. There are no orders for medications, meals, or standard protocols of any kind. Chemo starts really late--around 11:00 p.m. It's BCNU, which is mostly alcohol, so we were told to expect some weird side effects. However, Dale leaves before it's given and I never felt anything weird so I guess we missed the opportunity of seeing what I'm like when intoxicated or a little tipsy. I think I'm okay with that outcome :-)
Transplant - 7 days (T - 7) and counting!
The central line placement goes very well. And Meredith, the PA who places it, tells me that I'm her best patient ever--male or female. I opt for no sedation (of course!) and she says I'm only her third patient without sedation. The first was a pregnant mom and sedation would damage her baby. The second was a macho rock climber who cried the moment they brought him back into the procedure room. She said the pain isn't too bad but most people cringe when they know what all the tugging and pulling means and that's when they freak out. Not me.
They move me from the procedure table to my own bed to keep me sitting up while they pull the port. Once again, fairly easy and we're on our way for another chest x-ray, then admission to the 8th floor.
They warned me that half of the rooms on the East 8th side face a building with a lovely view of a cement wall. Sure enough, that's my room. It feels like I'm in prison, and I immediately start negotiating for a room with a view. I might have to wait a day for it, but I'm okay with that. I just can't handle 28 days or so in a prison room.
It seems no one was really prepared for me to come today, at least on the floor. There are no orders for medications, meals, or standard protocols of any kind. Chemo starts really late--around 11:00 p.m. It's BCNU, which is mostly alcohol, so we were told to expect some weird side effects. However, Dale leaves before it's given and I never felt anything weird so I guess we missed the opportunity of seeing what I'm like when intoxicated or a little tipsy. I think I'm okay with that outcome :-)
Transplant - 7 days (T - 7) and counting!
Thursday, August 18, 2011
Wednesday, August 17, 2011
Ah, peace and comfort (and more purple!) in the Mt. Timp. temple. The impressions I have are varied and hard to put into words, but I know that I'll survive the transplant, that not to proceed would be the equivalent of giving up because the Hodgkins would keep coming back--more and more frequently--and chemo would be less and less able to fight it, that there might be some complications from the transplant but I'll still be able to help others and learn and grow myself with them, and that the trials I've had so far have strengthened me and that strength will serve me well through the next few weeks and months.
Okay, we can and will keep going.
The family conference at LDS Hospital is longer than I anticipated and mostly a rehash of what we've already covered. What happens before, during, and after the transplant. What to expect. What the rules of the hospital ward are.
There are a few surprises: no visiting hours, no limits as to who can visit as long as they are healthy and over 14 (but exceptions can be made for age), I can wear my own clothes while there, and that isn't going to be a quiet and restful process in any way.
I have daily goals: walk four times a day for 20 minutes each time (wearing a heavy-duty "pig" mask, gown, and gloves each time), sit in a chair three times a day for at least 20 minutes each time, rinse my mouth every 30 minutes, practice expanding my lungs at least 4 times a day.
All that in additon to normal things like eating (even if I don't feel like it and it hurts to do so), showering, and having vitals checked every four hours--a.m. and p.m.
Whew! Is there going to be any time left for anything else? Why do they encourage me to pack so many things to do if it seems like every minutes is already scheduled for me? And is there a luggage or weight limit to the things I bring in because I've already accumulated quite a stack!
Oh, and there's a glitch. The insurance company and the hospital have yet to sign a legal contract that specifies at what level the health benefits are going to be paid because, while LDS Hospital is a preferred provider for almost everything, it isn't for the transplant process itself. We can't proceed until that contract is in place. So no port removal or central line placement tomorrow. The best we can hope for is that they get the contract figured out tomorrow and we can do everything on Friday: port removal, line placement, admission, and first day of chemo.
Please pray that the contract is negotiated by Thursday evening so that the transplant isn't delayed up to a week.
Okay, we can and will keep going.
The family conference at LDS Hospital is longer than I anticipated and mostly a rehash of what we've already covered. What happens before, during, and after the transplant. What to expect. What the rules of the hospital ward are.
There are a few surprises: no visiting hours, no limits as to who can visit as long as they are healthy and over 14 (but exceptions can be made for age), I can wear my own clothes while there, and that isn't going to be a quiet and restful process in any way.
I have daily goals: walk four times a day for 20 minutes each time (wearing a heavy-duty "pig" mask, gown, and gloves each time), sit in a chair three times a day for at least 20 minutes each time, rinse my mouth every 30 minutes, practice expanding my lungs at least 4 times a day.
All that in additon to normal things like eating (even if I don't feel like it and it hurts to do so), showering, and having vitals checked every four hours--a.m. and p.m.
Whew! Is there going to be any time left for anything else? Why do they encourage me to pack so many things to do if it seems like every minutes is already scheduled for me? And is there a luggage or weight limit to the things I bring in because I've already accumulated quite a stack!
Oh, and there's a glitch. The insurance company and the hospital have yet to sign a legal contract that specifies at what level the health benefits are going to be paid because, while LDS Hospital is a preferred provider for almost everything, it isn't for the transplant process itself. We can't proceed until that contract is in place. So no port removal or central line placement tomorrow. The best we can hope for is that they get the contract figured out tomorrow and we can do everything on Friday: port removal, line placement, admission, and first day of chemo.
Please pray that the contract is negotiated by Thursday evening so that the transplant isn't delayed up to a week.
Tuesday, August 16, 2011
We've talked about a bone marrow transplant for so long--almost two months. Now that we have a tentative schedule and it's almost here, I'm kind of freaking out.
It's almost here. Just 1-2 more normal days of freedom, then I'll be admitted for a month.
Is it wrong to say I don't want to? I don't want to leave my family and the simple comforts of my house. I don't want to miss that much work. I'll miss playing the organ and teaching Relief Society. I'll miss stretching out my hand at night to rest it against Dale's arm, hand, or back. I'll miss Tubber's soft hair and playful antics. I'll miss Miriam's first day of her senior year and Travis's first day of 8th grade. I'll miss various stages of Jordan's preparations to serve in the Sydney, Australia mission. There's so much to give up temporarily.
I'm such an emotional wreck, trying to get everything on my to-do list done before it's too late. Thank you, Dale, for understanding I just need to cry on your shoulder multiple times and release some of the losses I'm feeling.
Then, we get the final consent form for the transplant to preview before tomorrow's family conference at LDS Hospital. Summary? We're going to kill you. If we don't kill you, we'll make you wish you were dead. If you happen to survive, we're going to severely limit your quality of life in the future.
I know they have to tell you every possibility for full disclosure. However, if I wasn't scared before, I am now. So much that I'm questioning if we're doing the right thing. Aren't there alternatives to consider? Couldn't we just keep doing chemo whenever Hodgkins raises his incessant head?
Dale and I cannot figure this one out on our own, so we make arrangements to attend the temple in the morning.
Hopefully, I can sleep tonight with all of these demon thoughts of possible complications running through my head.
It's almost here. Just 1-2 more normal days of freedom, then I'll be admitted for a month.
Is it wrong to say I don't want to? I don't want to leave my family and the simple comforts of my house. I don't want to miss that much work. I'll miss playing the organ and teaching Relief Society. I'll miss stretching out my hand at night to rest it against Dale's arm, hand, or back. I'll miss Tubber's soft hair and playful antics. I'll miss Miriam's first day of her senior year and Travis's first day of 8th grade. I'll miss various stages of Jordan's preparations to serve in the Sydney, Australia mission. There's so much to give up temporarily.
I'm such an emotional wreck, trying to get everything on my to-do list done before it's too late. Thank you, Dale, for understanding I just need to cry on your shoulder multiple times and release some of the losses I'm feeling.
Then, we get the final consent form for the transplant to preview before tomorrow's family conference at LDS Hospital. Summary? We're going to kill you. If we don't kill you, we'll make you wish you were dead. If you happen to survive, we're going to severely limit your quality of life in the future.
I know they have to tell you every possibility for full disclosure. However, if I wasn't scared before, I am now. So much that I'm questioning if we're doing the right thing. Aren't there alternatives to consider? Couldn't we just keep doing chemo whenever Hodgkins raises his incessant head?
Dale and I cannot figure this one out on our own, so we make arrangements to attend the temple in the morning.
Hopefully, I can sleep tonight with all of these demon thoughts of possible complications running through my head.
Sunday, August 14, 2001
I'm sitting on the couch, visiting with our oldest son, when the doorbell rings. Travis goes to answer it. When the door opens, I think it's strange because I hear a few different voices in the background. I assume it's a group of his friends and don't think much of it until Travis hesistantly says, "Trish, it's for you."
Really? Who could be coming to visit me on a Sunday evening--unannounced?
I head towards the front door to see our entire front lawn covered with people--mostly women, some children, and two men--from the ward. And what's even more amazing is they're all wearing various shades of purple: shirts, dresses, hair bows, and purple ribbons tied everywhere.
It's such an amazing sight that I stop breathing for a few seconds. What an amazing display of support, concern, and love. I want to stand on the front porch, absorbing it all for a few minutes. However, I'm almost immediately herded into the middle of the pack for a picture and surrounded by such good friends.
What a blessing! I was looking around closely during Sacrament Meeting today, realizing that I wouldn't have a chance to see everyone for at least six weeks, and it was an overwhelmingly sobering and emotional thought. Now, here most of those whom I identified as missing the most are gathered together AND wearing purple.
After the pictures, things are being handed to me so fast that I can barely hold them all. So many things, so much love. Tears start streaming down my face without invitation.
So many cards--most of them in purple envelopes! Food: clam chowder, cucumber sandwiches, chicken alfredo, homemade bread. Treats: chocolate chip cookies, ginger snaps, Maddie's specialty, buttery concoctions that she added food coloring to to make purple (what else?). Books and bath salts.
And so many hugs! If you ever want to be bathed in love, just leave it to the members of the Cedar Hills 4th Ward! I would never have dreamed up such an outpouring, but it was perfect--absolutely perfect. Thank you to all who participated. You touched my soul and reminded me, once again, that I am not alone in this battle.
I hope to post pictures soon from the gathering, but I just couldn't wait any longer.
Really? Who could be coming to visit me on a Sunday evening--unannounced?
I head towards the front door to see our entire front lawn covered with people--mostly women, some children, and two men--from the ward. And what's even more amazing is they're all wearing various shades of purple: shirts, dresses, hair bows, and purple ribbons tied everywhere.
It's such an amazing sight that I stop breathing for a few seconds. What an amazing display of support, concern, and love. I want to stand on the front porch, absorbing it all for a few minutes. However, I'm almost immediately herded into the middle of the pack for a picture and surrounded by such good friends.
What a blessing! I was looking around closely during Sacrament Meeting today, realizing that I wouldn't have a chance to see everyone for at least six weeks, and it was an overwhelmingly sobering and emotional thought. Now, here most of those whom I identified as missing the most are gathered together AND wearing purple.
After the pictures, things are being handed to me so fast that I can barely hold them all. So many things, so much love. Tears start streaming down my face without invitation.
So many cards--most of them in purple envelopes! Food: clam chowder, cucumber sandwiches, chicken alfredo, homemade bread. Treats: chocolate chip cookies, ginger snaps, Maddie's specialty, buttery concoctions that she added food coloring to to make purple (what else?). Books and bath salts.
And so many hugs! If you ever want to be bathed in love, just leave it to the members of the Cedar Hills 4th Ward! I would never have dreamed up such an outpouring, but it was perfect--absolutely perfect. Thank you to all who participated. You touched my soul and reminded me, once again, that I am not alone in this battle.
I hope to post pictures soon from the gathering, but I just couldn't wait any longer.
Saturday, August 13, 2011
Friday, August 12, 2011
We have a tentative schedule for next week:
Wednesday - Meet with BMT for patient education and family session. (Do I really understand what I'm getting into?)
Thursday - Remove port and insert central line.
Friday - Admission and Day -7. (They count backwards from the first actual transplant day.)
Now that it's almost here, it's getting more intimidating and more real. I've started a list of things I want to get done before Friday. Whew! Better get cracking. Otherwise, those things will have to wait for about six weeks.
Wednesday - Meet with BMT for patient education and family session. (Do I really understand what I'm getting into?)
Thursday - Remove port and insert central line.
Friday - Admission and Day -7. (They count backwards from the first actual transplant day.)
Now that it's almost here, it's getting more intimidating and more real. I've started a list of things I want to get done before Friday. Whew! Better get cracking. Otherwise, those things will have to wait for about six weeks.
Tuesday, August 9, 2011
Tuesday, August 9, 2011
Heart cath day. Head out by 8:50 a.m. to make it to UVRMC by 9:30 a.m. I tell Dale of my prayer and request and this now feels like just another step in the process that won't delay the transplant.
Need to draw a CBC and access my port to do it. I don't understand why only certain, more highly trained personnel can access a port. It's actually easier than starting an IV because the port already has the vein encapsulated. No digging or guessing required.
Someone from the 7th floor--cancer ward--is nice to come down and we have access.
Lots of hurry up and wait when you're at a hospital and today is no different. I learn that I'm actually scheduled in the cath lab from 12-2. Wow! So I'm supposed to here 2.5 hours earlier so I can just hang out. And, to make everyone else feel more comfortable even though I won't need any sedation, I get to be fasting the entire time too. Okie dokie.
We get to start a little early--at 11:30. No, I don't want sedation. Dr. Carter agrees and tells me he'd never ask for sedation for this procedure either. But I'm already rethinking that decision. I can feel way more than I ever have before. It's definitely ouchy and my blood pressure clearly shows my stress. Darn!
Plus, my lungs seems to start reacting to the contrast liquid. Suddenly, I'm wheezing and my O2 level drops. IV medications and I'm awarded my very own nasal cannula for oxygen. Things look better until it's time to pull everything out and close.
It seems there's a nerve that runs along the artery we accessed, and the tech admits they must have nicked it because there are tears spontaneously running out of my eyes. This hurts! But there's no offer of sedation now. We're too close to the end, so grimace and bear it, Trish. This is a rare occurrence that just had to happen today. And my lungs aren't fully cooperating either. It's getting harder to breathe and the table starts violently spinning even though I'm laying perfectly flat. I don't like this. We're finally done after 15 minutes of strong, direct pressure right where it hurts and the pressure is causing even more pain.
The good news though. My aortic valve looks great--just slightly under normal. No heart valve transplant necessary. Dale looks at me and says "Your prayers were answered." I'm in pain and struggling to breathe, but he's absolutely right. I immediately burst into tears at the knowledge of a loving Heavenly Father answering my timid request.
Time to lay still in my room for three more hours while the site has a chance to form a strong clot that won't hemorrhage later. Yay! I can finally get up and move around.
The plan is to discharge me between 5 and 6 p.m. and the papers are already drawn up when my lungs decide they won't cooperate. Crud! The doctor wants me to stay the night? Really? When we didn't do any kind of heart interventions but take some measurements? I talk him into letting me go home and start getting dressed. Just putting on two articles of clothing, with Dale doing most of the work, drops my O2 level and makes me feel extremely dizzy. What's the right decision to make?
Time to involve Heavenly Father again. See, I can be taught :-) What's the right decision to make? I want to go home. We have a visitors coming over at 7:00 that we've never had before, and I want to participate in that visit. I reveal all of my reasons for wanting to go home and then realize, abruptly, that my reasons aren't good enough. There's more of risk than it's worth if I go home early.
What's even more miraculous is that I'm okay with staying. I can easily trade no valve transplant for one night in the hospital. Maybe this is a trial run for the four weeks of hospitalization that are coming.
I don't even need Dale to stay. I'm perfectly okay and want him to leave so he can meet our visitors. He gets to go home, and I get to catch up with these entries. It's all okay and someone much wiser than me is fully in charge. Thank you!
And, hopefully, we'll still get to proceed with the bone marrow transplant sometime next week. That's what I'm praying for now.
Need to draw a CBC and access my port to do it. I don't understand why only certain, more highly trained personnel can access a port. It's actually easier than starting an IV because the port already has the vein encapsulated. No digging or guessing required.
Someone from the 7th floor--cancer ward--is nice to come down and we have access.
Lots of hurry up and wait when you're at a hospital and today is no different. I learn that I'm actually scheduled in the cath lab from 12-2. Wow! So I'm supposed to here 2.5 hours earlier so I can just hang out. And, to make everyone else feel more comfortable even though I won't need any sedation, I get to be fasting the entire time too. Okie dokie.
We get to start a little early--at 11:30. No, I don't want sedation. Dr. Carter agrees and tells me he'd never ask for sedation for this procedure either. But I'm already rethinking that decision. I can feel way more than I ever have before. It's definitely ouchy and my blood pressure clearly shows my stress. Darn!
Plus, my lungs seems to start reacting to the contrast liquid. Suddenly, I'm wheezing and my O2 level drops. IV medications and I'm awarded my very own nasal cannula for oxygen. Things look better until it's time to pull everything out and close.
It seems there's a nerve that runs along the artery we accessed, and the tech admits they must have nicked it because there are tears spontaneously running out of my eyes. This hurts! But there's no offer of sedation now. We're too close to the end, so grimace and bear it, Trish. This is a rare occurrence that just had to happen today. And my lungs aren't fully cooperating either. It's getting harder to breathe and the table starts violently spinning even though I'm laying perfectly flat. I don't like this. We're finally done after 15 minutes of strong, direct pressure right where it hurts and the pressure is causing even more pain.
The good news though. My aortic valve looks great--just slightly under normal. No heart valve transplant necessary. Dale looks at me and says "Your prayers were answered." I'm in pain and struggling to breathe, but he's absolutely right. I immediately burst into tears at the knowledge of a loving Heavenly Father answering my timid request.
Time to lay still in my room for three more hours while the site has a chance to form a strong clot that won't hemorrhage later. Yay! I can finally get up and move around.
The plan is to discharge me between 5 and 6 p.m. and the papers are already drawn up when my lungs decide they won't cooperate. Crud! The doctor wants me to stay the night? Really? When we didn't do any kind of heart interventions but take some measurements? I talk him into letting me go home and start getting dressed. Just putting on two articles of clothing, with Dale doing most of the work, drops my O2 level and makes me feel extremely dizzy. What's the right decision to make?
Time to involve Heavenly Father again. See, I can be taught :-) What's the right decision to make? I want to go home. We have a visitors coming over at 7:00 that we've never had before, and I want to participate in that visit. I reveal all of my reasons for wanting to go home and then realize, abruptly, that my reasons aren't good enough. There's more of risk than it's worth if I go home early.
What's even more miraculous is that I'm okay with staying. I can easily trade no valve transplant for one night in the hospital. Maybe this is a trial run for the four weeks of hospitalization that are coming.
I don't even need Dale to stay. I'm perfectly okay and want him to leave so he can meet our visitors. He gets to go home, and I get to catch up with these entries. It's all okay and someone much wiser than me is fully in charge. Thank you!
And, hopefully, we'll still get to proceed with the bone marrow transplant sometime next week. That's what I'm praying for now.
Monday, August 8, 2011
One of the things Dale and I discussed on our ride to and from St. George is how conflicted I feel between trying to maintain some balance in my present state in life.
How do I juggle working when I don't feel my best and yet being productive, helping the kids accomplish what they need to, letting Dale know how much I appreciate his support and working to let him know how much I love him, serving others, and taking care of myself? It's a question that I know many people struggle with, but the ante seems greatly amped for me lately.
I sometimes identify with Peter very well. I know I have one of those addictive personalities. I would never drink alcohol because I'd probably be instantly addicted. I think I was a spirit in the pre-existence who thought, "Go ahead and send me to earth. I'll be so good. I'll do everything you ask, and I'll work so hard. Nothing will derail me." Remind you of anyone jumping into a stormy sea and then slowly sinking?
Dale is so good for me and my general impatience and almost over-zealousness. He is a great complement, and gently points out that maybe I've shortsighting one of the important areas of my life: my team at work. I am their manager and need to ensure that they have everything they need to succeed, whether I'm at work or not.
He's absolutely right. I am feeling more strength and energy as we get further from chemo, so I head to work for a full day today. It's such a great day. I get so much done and feel a natural high from being so productive. It's something I crave--to put in a good day's effort and accomplish high-quality work. Yay!
I also call Dr. Wendy's office to see if I can reschedule our appointment for tomorrow. Conflict solved! She doesn't even need to meet with me because the PET scan was so favorable. No more ICE chemo and no more appointments with her until after the bone marrow transplant.
How do I juggle working when I don't feel my best and yet being productive, helping the kids accomplish what they need to, letting Dale know how much I appreciate his support and working to let him know how much I love him, serving others, and taking care of myself? It's a question that I know many people struggle with, but the ante seems greatly amped for me lately.
I sometimes identify with Peter very well. I know I have one of those addictive personalities. I would never drink alcohol because I'd probably be instantly addicted. I think I was a spirit in the pre-existence who thought, "Go ahead and send me to earth. I'll be so good. I'll do everything you ask, and I'll work so hard. Nothing will derail me." Remind you of anyone jumping into a stormy sea and then slowly sinking?
Dale is so good for me and my general impatience and almost over-zealousness. He is a great complement, and gently points out that maybe I've shortsighting one of the important areas of my life: my team at work. I am their manager and need to ensure that they have everything they need to succeed, whether I'm at work or not.
He's absolutely right. I am feeling more strength and energy as we get further from chemo, so I head to work for a full day today. It's such a great day. I get so much done and feel a natural high from being so productive. It's something I crave--to put in a good day's effort and accomplish high-quality work. Yay!
I also call Dr. Wendy's office to see if I can reschedule our appointment for tomorrow. Conflict solved! She doesn't even need to meet with me because the PET scan was so favorable. No more ICE chemo and no more appointments with her until after the bone marrow transplant.
Sunday, August 7, 2011
Dale and I have a great visit in St. Gerorge, attend Fast and Testimony Meeting, and listen to the testimony of one dear sister whose family has been in our home and who recently lost her teenage son (age 17 and one of my two nephews' best friends).
Nolan laid down on the couch to watch a movie with his younger brother. When the movie was over, Austin couldn't wake him. He was gone just like that.
Thank you for the reminder of Heavenly Father's great plan and that we can still have joy and find peace even while experiencing almost unconceivable heartaches and losses. With my limited foresight, I wish I could prevent parents from ever having to bury one of their children. Good thing I'm not in charge!
Nolan laid down on the couch to watch a movie with his younger brother. When the movie was over, Austin couldn't wake him. He was gone just like that.
Thank you for the reminder of Heavenly Father's great plan and that we can still have joy and find peace even while experiencing almost unconceivable heartaches and losses. With my limited foresight, I wish I could prevent parents from ever having to bury one of their children. Good thing I'm not in charge!
Saturday, August 6, 2011
Head to the AF hospital at 8:00 a.m. for a CBC blood draw so they have time to send the results to LDS Hospital to see if I need a transfusion today.
Dale's driving, so I volunteer the two best places to park. We can either sneak through the north side of the ER to head to admitting and then down to the lab and almost straight out to the car. Or, we can walk through the front door to hit admitting first, then the lab and make a complete circle out to the car.
I start joking with Dale. You might have a serious medical problem if. . .
* You can accurately map out your local hospital, to scale, and know where each different department is located.
* You can accurately map more than one hospital.
* You know all of the shortcuts between the different departments at your local hospitals.
* You can read medical test result reports and understand what they mean.
* You are on a first-name basis with your doctor.
* You are on a first-name basis with more than one doctor.
* You have more than one doctor's phone number on speed dial.
* You've been given more than one doctor's personal cell phone number.
* You know your best vein to access for blood draws AND what size needle to suggest.
* Your personal medical bills will raise the premiums for your entire company next year.
Anyway, I'm probably slightly crazy for thinking these are so hilarious!
The test results are back by 9:30 this morning. While they are still low, they are trending up so no transfusions today.
Dale and I realize that this might be the last weekend we have for several months to escape together and get out of town, so, somewhat spontaneously, we arrange to surprise my sister and greatest-only-to-Dale-support-source with a quick visit to St. George.
Thanks to Amy agreeing to cover the organ tomorrow, we have lots of time to talk on the ride down. I almost have a small panic attack as I realize what a heart tranplant could entail. I've learned by now that "What if" questions are usually not a good path for me to head down. Got to stop this train of thought. What could we do instead?
Got it, Heavenly Father. Of course, let me involve you. Someone really wise lately counseled that we should pray for what we want and then ask for Heavenly Father's will to be done. (Thanks, Dan. That lesson has obviously stuck with me, and I'm not sure I would have been comfortable putting that plan in action before that lesson.) It's exactly what Christ did in the Garden of Gethsemane. I know that, but I've never felt quite at ease asking for my life to be made easier in some things. Comfort, peace, strength, courage--sure! I can ask for those. But removing trials or eliminating them somewhat--not so sure about that. Of course, Christ can ask. He's perfect. He would never ask for things His Father didn't agree with. I don't have that kind of confidence for my requests. But let me try it.
Heavenly Father, please, please heal my aortic valve--at least temporarily. I know thou can heal it. I know thou can postpone the heart valve surgery. I know thou loves me and wants only the best for me. I'm just not sure what that best is because my foresight is so miniscule compared to thine. I would love to be able to deal with one transplant at a time, so I can heal from cancer before dealing with the next challenge. I ask these things according to thy will and thy plan. And please bless me to have the courage and strength and peace to accept whatever that plan is.
I feel better even though I don't really know what's going to happen, but I decide to plant that small seed of faith and proceed as if the heart cath will prove that it was just a bad echo and my valve is fine. Help mine unbelief!
Dale's driving, so I volunteer the two best places to park. We can either sneak through the north side of the ER to head to admitting and then down to the lab and almost straight out to the car. Or, we can walk through the front door to hit admitting first, then the lab and make a complete circle out to the car.
I start joking with Dale. You might have a serious medical problem if. . .
* You can accurately map out your local hospital, to scale, and know where each different department is located.
* You can accurately map more than one hospital.
* You know all of the shortcuts between the different departments at your local hospitals.
* You can read medical test result reports and understand what they mean.
* You are on a first-name basis with your doctor.
* You are on a first-name basis with more than one doctor.
* You have more than one doctor's phone number on speed dial.
* You've been given more than one doctor's personal cell phone number.
* You know your best vein to access for blood draws AND what size needle to suggest.
* Your personal medical bills will raise the premiums for your entire company next year.
Anyway, I'm probably slightly crazy for thinking these are so hilarious!
The test results are back by 9:30 this morning. While they are still low, they are trending up so no transfusions today.
Dale and I realize that this might be the last weekend we have for several months to escape together and get out of town, so, somewhat spontaneously, we arrange to surprise my sister and greatest-only-to-Dale-support-source with a quick visit to St. George.
Thanks to Amy agreeing to cover the organ tomorrow, we have lots of time to talk on the ride down. I almost have a small panic attack as I realize what a heart tranplant could entail. I've learned by now that "What if" questions are usually not a good path for me to head down. Got to stop this train of thought. What could we do instead?
Got it, Heavenly Father. Of course, let me involve you. Someone really wise lately counseled that we should pray for what we want and then ask for Heavenly Father's will to be done. (Thanks, Dan. That lesson has obviously stuck with me, and I'm not sure I would have been comfortable putting that plan in action before that lesson.) It's exactly what Christ did in the Garden of Gethsemane. I know that, but I've never felt quite at ease asking for my life to be made easier in some things. Comfort, peace, strength, courage--sure! I can ask for those. But removing trials or eliminating them somewhat--not so sure about that. Of course, Christ can ask. He's perfect. He would never ask for things His Father didn't agree with. I don't have that kind of confidence for my requests. But let me try it.
Heavenly Father, please, please heal my aortic valve--at least temporarily. I know thou can heal it. I know thou can postpone the heart valve surgery. I know thou loves me and wants only the best for me. I'm just not sure what that best is because my foresight is so miniscule compared to thine. I would love to be able to deal with one transplant at a time, so I can heal from cancer before dealing with the next challenge. I ask these things according to thy will and thy plan. And please bless me to have the courage and strength and peace to accept whatever that plan is.
I feel better even though I don't really know what's going to happen, but I decide to plant that small seed of faith and proceed as if the heart cath will prove that it was just a bad echo and my valve is fine. Help mine unbelief!
Friday, August 5, 2011
Time to meet with Dr. Jerry, cardiologist, and review the results of some of yesterday's tests. He was so good to squeeze me into his already overbooked schedule. I left a message last night with BMT to say I managed to get an expedited appointment, and I need to get the results of the EKG and echocardiogram to take with me today, However, I haven't heard anything. So at 9:00 a.m. I call BMT to see how to get the results for my 10:00 appointment. Nothing like having an urgent deadline!
Still trying to get the bone marrow transplant scheduled for sometime next week.
We meet with Brad, the PA, first. He's not very encouraging.
We've been watching my aortic valve for about five years. It was damaged by the radiation I got 36 years ago and needs to be replaced when it measures less than .75. (That's a fun discussion to have. Do I want it replaced with a pig valve that requires more daily medications and has a higher risk of rejection or a mechanical one, which will make a funny audible sound if you're close to me?)
Measurement from the echocardiogram? .64. NO! My heart feels like it skips a beat. No pun intended. How do we fit a heart valve transplant in with a bone marrow transplant? Which has priority? If we need to strengthen the heart so it survives the bone marrow process, cancer isn't usually patient so what does that mean? If we proceed with the bone marrow, will that weaken my heart so much that I won't survive? I did not expect this at all. Shoot!
What do we do now? I volunteer that the technician really wasn't very good. She often couldn't find what she was looking for and I now have about six bruises from the amount of pressure she used in different positions to try and find the place. Is there any chance that it was just a bad scan?
Dr. Jerry comes in at this point to weigh in. He agrees with my possible explanation, so we need to do another type of test to try and get a more accurate number. Do I want a TTE (transesophageal echocardiogram)--a small video recording device shoved down my throat so they can get closer to the aorta? I've had one of those. All that gag reflex jumping in and a very sore throat afterwards? What's my other option? A heart catheterization. Oh, I've had 3-4 of those. Access the inguinal arteries and veins in my right leg (of course, because the scar tissue and healing incision from the biopsy is still in my left leg) and thread a wire up into the heart. That's the option I want. Plus, while they're already there, they can enter the lungs and get an accurate reading of my pulmonary hypertension, which Dr. Mike, pulmonologist, would love to review on Friday. He's been bugging me for another heart cath for the last year or so.
We have a plan. Now we just have to schedule it, which goes from bad (.64 reading) to worse. Dr. Jerry recently moved and is no longer a covered provider or has privileges at a covered hospital. Shoot again! He can recommend a former colleague to me, but it's definitely not what I want.
After several phone calls to my insurance and various hospitals around Utah and Salt Lake counties, I finally decide we'd better go with the covered provider and hospital, so our medical bills don't escalate.
I start praying at this point that we're able to get the cath scheduled soon--next week, if possible. Several more phone calls and Brad returns my call. Success! Dr. Carter can do it Tuesday morning at UVRMC in Provo if that works with my schedule. I'll make it work.
I'm supposed to meet with Dr. Wendy on Tuesday, but I think she's easier to reschedule than trying to get another heart cath appointment. I'll take Tuesday, with Dr. Carter, in the UVRMC heart lab. Do I need a weapon to finalize my choice (like the game Clue?). Oh, the weapons are scalpels and hemostats and wires. I win!
Still trying to get the bone marrow transplant scheduled for sometime next week.
We meet with Brad, the PA, first. He's not very encouraging.
We've been watching my aortic valve for about five years. It was damaged by the radiation I got 36 years ago and needs to be replaced when it measures less than .75. (That's a fun discussion to have. Do I want it replaced with a pig valve that requires more daily medications and has a higher risk of rejection or a mechanical one, which will make a funny audible sound if you're close to me?)
Measurement from the echocardiogram? .64. NO! My heart feels like it skips a beat. No pun intended. How do we fit a heart valve transplant in with a bone marrow transplant? Which has priority? If we need to strengthen the heart so it survives the bone marrow process, cancer isn't usually patient so what does that mean? If we proceed with the bone marrow, will that weaken my heart so much that I won't survive? I did not expect this at all. Shoot!
What do we do now? I volunteer that the technician really wasn't very good. She often couldn't find what she was looking for and I now have about six bruises from the amount of pressure she used in different positions to try and find the place. Is there any chance that it was just a bad scan?
Dr. Jerry comes in at this point to weigh in. He agrees with my possible explanation, so we need to do another type of test to try and get a more accurate number. Do I want a TTE (transesophageal echocardiogram)--a small video recording device shoved down my throat so they can get closer to the aorta? I've had one of those. All that gag reflex jumping in and a very sore throat afterwards? What's my other option? A heart catheterization. Oh, I've had 3-4 of those. Access the inguinal arteries and veins in my right leg (of course, because the scar tissue and healing incision from the biopsy is still in my left leg) and thread a wire up into the heart. That's the option I want. Plus, while they're already there, they can enter the lungs and get an accurate reading of my pulmonary hypertension, which Dr. Mike, pulmonologist, would love to review on Friday. He's been bugging me for another heart cath for the last year or so.
We have a plan. Now we just have to schedule it, which goes from bad (.64 reading) to worse. Dr. Jerry recently moved and is no longer a covered provider or has privileges at a covered hospital. Shoot again! He can recommend a former colleague to me, but it's definitely not what I want.
After several phone calls to my insurance and various hospitals around Utah and Salt Lake counties, I finally decide we'd better go with the covered provider and hospital, so our medical bills don't escalate.
I start praying at this point that we're able to get the cath scheduled soon--next week, if possible. Several more phone calls and Brad returns my call. Success! Dr. Carter can do it Tuesday morning at UVRMC in Provo if that works with my schedule. I'll make it work.
I'm supposed to meet with Dr. Wendy on Tuesday, but I think she's easier to reschedule than trying to get another heart cath appointment. I'll take Tuesday, with Dr. Carter, in the UVRMC heart lab. Do I need a weapon to finalize my choice (like the game Clue?). Oh, the weapons are scalpels and hemostats and wires. I win!
Friday, August 5, 2011
Thursday, August 4, 2011
Test day at LDS Hospital. Dale's schedule freed up so he can go with me. I'm glad, but I don't feel like I need him to.
Okay, find cardiology on the 7th floor for an echocardiogram and EKG. Easy stuff and nothing new there.
Down to the 6th floor and the pulmonary lab for breathing tests. How much can you blow out and how much can you suck in? Easy again.
Up to the 8th floor for lab work. Should be easy again. Sure! There are so many tubes to fill with blood (about 29) that the lab tech needs someone else to hand them to her. She's afraid my veins aren't going to hold out. We joke about her sucking out all my blood and then saving the last tube for the CBC to count blood cells.
At one point, I have her trying to give me information, the BMT coordinator talking to me about possibly speeding up the timing of the transplant, another tech putting a medical bracelet on me (to make labels for all those vials of blood), Dale trying to tell me what the plumber at our house is finding, a student nurse watching and trying to help, and 2-3 others popping in for various questions. How many people does it take to collect my blood? 5-7, depending on what point we're at in the process.
And we're not finished yet. They need a urine sample and a rectal swab(!) before they can let me go. Now that there's no dignity left in the world, I proceed to the 1st floor and radiology.
An easy chest x-ray later and Dale and I successfully navigate the long maze of temporary hospital corridors back to the makeshift hospital entrance (while they construct a new main entrance over the next 6-7 months). We almost make it to the valet station out in the driveway, when my cell phone rings.
"Trish? Are you still close to the hospital? We need you to come back to the 8th floor. You're platelet counts are dangerously low and we need to transfuse a unit." Oh joy!
We meander slowly back through the maze of corridors, up to the 8th floor, and spend another 1.5 hours waiting for yellow blood products to slowly drip through my port. But that's not quite enough because my red blood cells, hemoglobin, and hematocrit are also low. Not dangerously low and needing an immediate transfusion, but low enough that I need an order for another CBC at AF Hospital on Saturday morning. Then, I get to wait until the results are phoned in to LDS Hospital so they can decide if I need to head back to LDS on Saturday afternoon for another transfusion.
Whew! I'm tired. I'm even more tired now that I know how low my blood counts are. Can I just go home and sleep? Please? And I was thinking that Dale didn't need to come today.
Okay, find cardiology on the 7th floor for an echocardiogram and EKG. Easy stuff and nothing new there.
Down to the 6th floor and the pulmonary lab for breathing tests. How much can you blow out and how much can you suck in? Easy again.
Up to the 8th floor for lab work. Should be easy again. Sure! There are so many tubes to fill with blood (about 29) that the lab tech needs someone else to hand them to her. She's afraid my veins aren't going to hold out. We joke about her sucking out all my blood and then saving the last tube for the CBC to count blood cells.
At one point, I have her trying to give me information, the BMT coordinator talking to me about possibly speeding up the timing of the transplant, another tech putting a medical bracelet on me (to make labels for all those vials of blood), Dale trying to tell me what the plumber at our house is finding, a student nurse watching and trying to help, and 2-3 others popping in for various questions. How many people does it take to collect my blood? 5-7, depending on what point we're at in the process.
And we're not finished yet. They need a urine sample and a rectal swab(!) before they can let me go. Now that there's no dignity left in the world, I proceed to the 1st floor and radiology.
An easy chest x-ray later and Dale and I successfully navigate the long maze of temporary hospital corridors back to the makeshift hospital entrance (while they construct a new main entrance over the next 6-7 months). We almost make it to the valet station out in the driveway, when my cell phone rings.
"Trish? Are you still close to the hospital? We need you to come back to the 8th floor. You're platelet counts are dangerously low and we need to transfuse a unit." Oh joy!
We meander slowly back through the maze of corridors, up to the 8th floor, and spend another 1.5 hours waiting for yellow blood products to slowly drip through my port. But that's not quite enough because my red blood cells, hemoglobin, and hematocrit are also low. Not dangerously low and needing an immediate transfusion, but low enough that I need an order for another CBC at AF Hospital on Saturday morning. Then, I get to wait until the results are phoned in to LDS Hospital so they can decide if I need to head back to LDS on Saturday afternoon for another transfusion.
Whew! I'm tired. I'm even more tired now that I know how low my blood counts are. Can I just go home and sleep? Please? And I was thinking that Dale didn't need to come today.
Wednesay, August 3, 2011
It's so hard to breathe. I can take a few steps, very slowly, and feel the world caving in on me and blacking out around me.
Walking 2.5 blocks to the bus stop used to be fairly easy. Now, I have to stop about every ten steps and try to calm my heart and my lungs so I can keep going. I've already missed the bus once this week and had to wait 40 minutes until the next one came.
This feels like when I had clots in my lungs about three years ago, except that the feeling happened more gradually this time, over the course of the last week, instead of over two days.
Crud! I wonder what this means. Let's go to the doctor's office and see what my blood pressure and oxygen levels are like. O2: 84% and dropping, 83, 82, 80, 79. Okay, that's not good at all. I was hoping for at least 92%. Blood pressure: 183/103. Double crud! So my body isn't getting enough oxygen and my heart is working harder to try and compensate.
Dale, is there any point in putting off the inevitable--an ER visit? Anything else to try? Anything else to check? Drat! Is this a busy time for the ER? No. Would I rather wait until it's worse and have to come back at 1 or 3 a.m. tonight? No. Okay. Let's go.
I don't want the ER to spend a lot of time trying to rule out the universe when I'm only concerned with one, life-threatening thing, so I walk in prepared and armed.
Look! I'm having trouble breathing. The doctor's office just measured my O2 and it was 80 and dropping. My blood pressure was 183/103. I have a history of PEs, and I'd just like to ensure that I don't have them again.
"Follow me back to room 10 please. I'm Stephanie and will be organizing this little party for you today. Let me get the doctor."
He wants to know what my pertinent history is--Good thing he clarified that. We don't have three years for him to review my full medical history--and what brought me to this point. It still takes 15 mintues to recount the critical facts for the day, but he agrees that we ought to rule out PEs at least.
He offers to draw blood work, but realizes that Dr. Wendy is watching it pretty carefully. He also offers to do a cardiac workup because that's pretty normal when the lungs seem compromised. No thanks. Just rule out PEs please.
That CAT scan comes back clear. Hooray! No more 9-day hospital stays. We both figure that it's probably the chemo that's causing the dyspnea--especially since one of the drugs is know to cause lung toxicities and dizziness.
The best part of the whole visit and the part that makes it (almost) worthwhile? They were able to pull up the PET scan from yesterday and print the results for me. It didn't show any unknown lung issues. Most importantly, it also showed no more Hodgkins! There was some slight activity in the lymph nodes but so little it cannot be called cancerous activity.
Hooray! That means that we don't have to do any more ICE chemo and can proceed more quickly to the bone marrow transplant. Not that I'm so excited about getting to that point, but the quicker we're there, the quicker we can be on the road to recovery and, hopefully, cure!
Walking 2.5 blocks to the bus stop used to be fairly easy. Now, I have to stop about every ten steps and try to calm my heart and my lungs so I can keep going. I've already missed the bus once this week and had to wait 40 minutes until the next one came.
This feels like when I had clots in my lungs about three years ago, except that the feeling happened more gradually this time, over the course of the last week, instead of over two days.
Crud! I wonder what this means. Let's go to the doctor's office and see what my blood pressure and oxygen levels are like. O2: 84% and dropping, 83, 82, 80, 79. Okay, that's not good at all. I was hoping for at least 92%. Blood pressure: 183/103. Double crud! So my body isn't getting enough oxygen and my heart is working harder to try and compensate.
Dale, is there any point in putting off the inevitable--an ER visit? Anything else to try? Anything else to check? Drat! Is this a busy time for the ER? No. Would I rather wait until it's worse and have to come back at 1 or 3 a.m. tonight? No. Okay. Let's go.
I don't want the ER to spend a lot of time trying to rule out the universe when I'm only concerned with one, life-threatening thing, so I walk in prepared and armed.
Look! I'm having trouble breathing. The doctor's office just measured my O2 and it was 80 and dropping. My blood pressure was 183/103. I have a history of PEs, and I'd just like to ensure that I don't have them again.
"Follow me back to room 10 please. I'm Stephanie and will be organizing this little party for you today. Let me get the doctor."
He wants to know what my pertinent history is--Good thing he clarified that. We don't have three years for him to review my full medical history--and what brought me to this point. It still takes 15 mintues to recount the critical facts for the day, but he agrees that we ought to rule out PEs at least.
He offers to draw blood work, but realizes that Dr. Wendy is watching it pretty carefully. He also offers to do a cardiac workup because that's pretty normal when the lungs seem compromised. No thanks. Just rule out PEs please.
That CAT scan comes back clear. Hooray! No more 9-day hospital stays. We both figure that it's probably the chemo that's causing the dyspnea--especially since one of the drugs is know to cause lung toxicities and dizziness.
The best part of the whole visit and the part that makes it (almost) worthwhile? They were able to pull up the PET scan from yesterday and print the results for me. It didn't show any unknown lung issues. Most importantly, it also showed no more Hodgkins! There was some slight activity in the lymph nodes but so little it cannot be called cancerous activity.
Hooray! That means that we don't have to do any more ICE chemo and can proceed more quickly to the bone marrow transplant. Not that I'm so excited about getting to that point, but the quicker we're there, the quicker we can be on the road to recovery and, hopefully, cure!
Tuesday, August 2, 2011
Today's PET/CT scan was pretty unremarkable.
Get finger poked for fasting glucose level (96) and creatine (good). Wait for my port to be accessed, flushed, injected with radioactive sugar, flushed again, drink cranberry juice-like contrast, take PET scans, have port injected with more contrast, finish CT portion, flush port again and deaccess it.
The worst part for me is having to wait in a dark room for an hour while the radioactive isotope looks for any cancer cells, which are always hungry for sugar. I'm convinced you can literally drive yourself insane if you're alone with just your thoughts and let them roam rampantly and unbridled.
What will the scans show today? What if I don't lie as absolutely still as possible and give myself false readings on the scans? What if the scans show that the chemo isn't touching the lymph nodes? They still feel as large to me as they did at first. What if I need more chemo? What if I need several more rounds of chemo? What if the chemo doesn't work? What's the next step? What if we can never do the transplant? What would Dale do if I die?
OKAY. ENOUGH! Time to stop that train of thought immediately.
Where's your faith, Trish? Yes, you have no control over any of this--except to proceed with faith and a positive approach and learn and grow.
Bottom line: does it matter if I live on the earth a bit longer or die tomorrow as long as I know that Heavenly Father lives, that my Savior lives, that they love me, that they want the best for me, and that I want to follow them and become more like them? What else really matters or could possibly supercede that knowledge and desire? Certainly not silly old afflictions of the mortal body only--like cancer.
Just breathe, Trish. This too shall pass.
I ask to see the pictures from the scans and don't see any orange glowing orbs this time. I'm hoping that means good news and not the more probable--that I have no clue what I'm looking at or for. I give my professional and scientific findings to Dale. No orange glowing orbs = no more chemo.
We'll see :-)
Get finger poked for fasting glucose level (96) and creatine (good). Wait for my port to be accessed, flushed, injected with radioactive sugar, flushed again, drink cranberry juice-like contrast, take PET scans, have port injected with more contrast, finish CT portion, flush port again and deaccess it.
The worst part for me is having to wait in a dark room for an hour while the radioactive isotope looks for any cancer cells, which are always hungry for sugar. I'm convinced you can literally drive yourself insane if you're alone with just your thoughts and let them roam rampantly and unbridled.
What will the scans show today? What if I don't lie as absolutely still as possible and give myself false readings on the scans? What if the scans show that the chemo isn't touching the lymph nodes? They still feel as large to me as they did at first. What if I need more chemo? What if I need several more rounds of chemo? What if the chemo doesn't work? What's the next step? What if we can never do the transplant? What would Dale do if I die?
OKAY. ENOUGH! Time to stop that train of thought immediately.
Where's your faith, Trish? Yes, you have no control over any of this--except to proceed with faith and a positive approach and learn and grow.
Bottom line: does it matter if I live on the earth a bit longer or die tomorrow as long as I know that Heavenly Father lives, that my Savior lives, that they love me, that they want the best for me, and that I want to follow them and become more like them? What else really matters or could possibly supercede that knowledge and desire? Certainly not silly old afflictions of the mortal body only--like cancer.
Just breathe, Trish. This too shall pass.
I ask to see the pictures from the scans and don't see any orange glowing orbs this time. I'm hoping that means good news and not the more probable--that I have no clue what I'm looking at or for. I give my professional and scientific findings to Dale. No orange glowing orbs = no more chemo.
We'll see :-)
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