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| Nicholas making friends at AT&T today and getting his Noon Year's kiss! |
Monday, December 31, 2012
Saturday, December 22, 2012
Lame
I had a couple days to luxuriate in the happy news of last week before some minor issues ensued. On Monday I started developing gastrointestinal issues, which became increasingly worse over the next couple of days. I was admitted to the hospital on Wednesday so that they could do an endoscopy and flexoscopy to get biopsies to test for graft vs host disease (GVHD). In the meantime, a rash developed on my hands and arms, which is also a possible indicator of GVHD. So they took two skin biopsies too.
The worst part of this experience really was not being able to eat. I was told no food or water from Wednesday evening until my procedure on Thursday. I was wheeled down to Endoscopy around 3:30pm, only be told that it could not happen that day because I hadn't been prepped by the nurse. So I thought, "Great, I'll go have a hamburger now." No such luck -- I had been ordered to a clear liquid diet. So after my dinner of chicken broth and lime jello, I had to fast again for the procedure again the next day. Now, as I write this, I am happy chomping away on Grammy's Chex Mix*.
The test results won't be available until later next week, so due to the extreme nature of both issues, the doctor has started me on Prednisone. I took my first dose yesterday and there is already a very noticeable improvement. So, I'll be going home this afternoon and continue the steroid until I go to clinic next week. The doctor did not want to start a steroid right away, without scientific evidence of GVHD, because it can also inhibit the new immune system from fighting against the lymphoma. But because it will take so long for the results (because of the holiday), he really had no choice. And this clinical evidence really points to GVHD.
That's it for now! Happy Holidays!
*Grammy's Chex Mix Recipe
Combine in open roaster: (aluminum, disposable turkey pan works well.)
1 can peanuts 2 cups wheat chex
2 cups pretzels 2 cups corn chex
2 cups kix 2 cups goldfish
2 cups cheerios
Melt together:
3/4 cup butter 1 tsp. garlic salt
1 T. worcestershire sauce 1 tsp. celery salt
Pour liquid ingredients over the dry mix...stirring as you pour. Crisp 1 hour at 225, stirring occasionally.
The worst part of this experience really was not being able to eat. I was told no food or water from Wednesday evening until my procedure on Thursday. I was wheeled down to Endoscopy around 3:30pm, only be told that it could not happen that day because I hadn't been prepped by the nurse. So I thought, "Great, I'll go have a hamburger now." No such luck -- I had been ordered to a clear liquid diet. So after my dinner of chicken broth and lime jello, I had to fast again for the procedure again the next day. Now, as I write this, I am happy chomping away on Grammy's Chex Mix*.
The test results won't be available until later next week, so due to the extreme nature of both issues, the doctor has started me on Prednisone. I took my first dose yesterday and there is already a very noticeable improvement. So, I'll be going home this afternoon and continue the steroid until I go to clinic next week. The doctor did not want to start a steroid right away, without scientific evidence of GVHD, because it can also inhibit the new immune system from fighting against the lymphoma. But because it will take so long for the results (because of the holiday), he really had no choice. And this clinical evidence really points to GVHD.
That's it for now! Happy Holidays!
*Grammy's Chex Mix Recipe
Combine in open roaster: (aluminum, disposable turkey pan works well.)
1 can peanuts 2 cups wheat chex
2 cups pretzels 2 cups corn chex
2 cups kix 2 cups goldfish
2 cups cheerios
Melt together:
3/4 cup butter 1 tsp. garlic salt
1 T. worcestershire sauce 1 tsp. celery salt
Pour liquid ingredients over the dry mix...stirring as you pour. Crisp 1 hour at 225, stirring occasionally.
Friday, December 14, 2012
Touchdown
It's been some time since I've written, but there hasn't been a whole lot to write about. I've been spending lots of time at home on the couch. I've still been going to the doctor twice a week. I had the paraflu virus (same upper respiratory virus that so many people have had), and made it through nicely. I developed some severe achiness in my limbs and had difficulty sleeping as a result. So, the doctor prescribed Neurontin (a drug to treat nerve pain), which has made it more manageable. The thought is that the pain is a side effect of the antibody drug I'm receiving every 3 weeks, which is being used to try to eliminate some of the residual lymphoma while my new immune system is being ramped up.
Today I saw an opthamologist because I've been having vision issues. She found three hematomas (broken blood vessels) behind both of my retinas. This apparently can happen with blood cancers. The blood vessels heal on their own (my vision has actually improved a lot over the last couple weeks), but I will have to see a retina specialist. I'm not concerned because this actually happened to me when I was pregnant and I turned out fine. Actually, I didn't turn out fine.....I was eventually diagnosed with Lymphoma and this was one of the first noticeable markers of the disease. So I'd rather not think back to that episode.
Finally, in reference to the blog title, I received encouraging news tonight from my nurse practitioner. It turns out that Leah's cells are very aggressive (what else would we expect, though?!). UCSF did a "chimerism" test on my blood a couple weeks ago and the results are back. All of my "hematology" (white cells and red cells), which means all the cells coming out of my bone marrow, are from the donor! In other words, my bone marrow was successfully ablated by the high-dose chemotherapy I received in the hospital and Leah's cells successfully repopulated my bone marrow. Since the marrow is the source of the disease, this is extremely good news. Three cheers for Leah!!! The transplant was a success! Her cells went to the right place and successfully took over! Somehow, though, Leah's cells taking charge isn't a huge surprise :) There is still a long way to go on this, but for the present, the transplant results could not be better.
Oh and if anyone is wondering about Nicholas, he is a very active almost 15 month old. He goes to music class, gym class, and swim class each week. He likes to scream, stand on chairs, blow his nose, and seek attention. His newest words are "nana" and "ho ho ho" (yet he wants absolutely nothing to do with Santa).
Today I saw an opthamologist because I've been having vision issues. She found three hematomas (broken blood vessels) behind both of my retinas. This apparently can happen with blood cancers. The blood vessels heal on their own (my vision has actually improved a lot over the last couple weeks), but I will have to see a retina specialist. I'm not concerned because this actually happened to me when I was pregnant and I turned out fine. Actually, I didn't turn out fine.....I was eventually diagnosed with Lymphoma and this was one of the first noticeable markers of the disease. So I'd rather not think back to that episode.
Finally, in reference to the blog title, I received encouraging news tonight from my nurse practitioner. It turns out that Leah's cells are very aggressive (what else would we expect, though?!). UCSF did a "chimerism" test on my blood a couple weeks ago and the results are back. All of my "hematology" (white cells and red cells), which means all the cells coming out of my bone marrow, are from the donor! In other words, my bone marrow was successfully ablated by the high-dose chemotherapy I received in the hospital and Leah's cells successfully repopulated my bone marrow. Since the marrow is the source of the disease, this is extremely good news. Three cheers for Leah!!! The transplant was a success! Her cells went to the right place and successfully took over! Somehow, though, Leah's cells taking charge isn't a huge surprise :) There is still a long way to go on this, but for the present, the transplant results could not be better.
Oh and if anyone is wondering about Nicholas, he is a very active almost 15 month old. He goes to music class, gym class, and swim class each week. He likes to scream, stand on chairs, blow his nose, and seek attention. His newest words are "nana" and "ho ho ho" (yet he wants absolutely nothing to do with Santa).
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