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. :-)
Purple Everywhere
Daily Herald picture
Wednesday, August 24, 2011
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!
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