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!
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