There seem to be several things I’m at nearly 100% recently.One is in completing the 100 days! Two more days and we’re going home, not any too soon, believe me!Another, I just found out, is in my bone marrow and blood cells. There are several measurements where they compute the percentage. One is in bone marrow cells, and I’m at 98% donor. Another is red blood cells, and I’m at 90% donor, and for
Last weekend at home was wonderful. On Saturday, I took the bus to the Farmer’s Market, met Gene there and had a root beer float with him, then took the bus back home. Then, Marilyn and I walked the 2 miles to the market along the waterfront. It’s a lot of fun seeing people you know at the market.Going home got a little complicated. My oncologist is on vacation the next 2 weeks, and the first
I’ve now had 4 bone marrow aspiration procedures here in addition to the 4 I’ve had before. Yesterday I was delighted to have the same person that did the first one here. I asked about her the other times, and was told she only worked on Thursday, but there she was on a Friday! That was nice, but what’s not so nice were the 2 skin biopsies she took from the same site. It’s somewhat uncomfortable,
While waiting for a job to open up in the Seattle area in 1976, I had a fear of getting too attached to my accidental home in Los Angeles. Moving to where the jobs were had been traumatic enough, and I did not want to get “stuck” there. I just wanted out of L.A., so I took a job in Dallas for a year. It’s a funny thing when you leave a place you’re “not attached” to, all of a sudden all the good
First you have chemo to condition your body to accept the donor’s stem cells, and drugs to suppress the immune system so as not to reject the transplant, and thus the CMV reactivates itself (see my prior post Learning more), as viruses are apt to do in these situations. This happened to me before with the chicken pox virus. Then you take another drug to counter the CMV, which lowers the white
Sometimes it’s good news that is hard to believe. This week the doctor said that most myeloma patients do well after this transplant procedure, mentioning someone that is 8 years out. I don’t know how to hold onto that hope without crushing it. Just one day at a time, I guess.But the tests are good. I got clarification on the 0.02 number from the bone marrow test, and that is the percentage of
Last week was day 56, time for another bone marrow aspiration. There was nothing alarming in the results, still a tiny bit of cancer, but it looks to me like the report says that there is less than 4 weeks ago. All good news, so far. My weight is pretty stable now, and we’re working on taking me off the IV fluids, which will be very nice.Saturday we took a long walk to Fremont, to Costas Opa
Sometimes in this life I’ve had to learn more than I wanted to. Like multiple myeloma, for instance. I just learned that my cousin has had to learn about another rare disease, called PMP. There’s not much more to do than to learn what you can, and carry on.This week I’m learning about CMV, or cytomegalovirus. It’s a very common virus, between 50 and 80% of adults have been infected by it. Most
This week I’m celebrating reaching the half-way point! Fifty days out of 100. I can’t wait. I might even sneak home on a day-trip this weekend.The bean counters are at it again, wouldn’t you know. There was an article about this in the paper, which reported that my employer let about 1300 people go on Tuesday. If you know why the computer in “2001” was called HAL, then you know what company that
MM (Multiple Myeloma)
MDS (Myelodysplastic Syndrome)
Patients & Caregivers
Clinical research study on a newly launched medical product. The purpose is to gain insight and gather opinions from patients and their caregivers that are diagnosed with MM or MDS. It is not necessary to be taking medications to participate. All information is completely confidential and used for research purposes only.
In person 45-50 minute interview
Locations & Dates -Philadelphia, PA – 5/10,5/11,5/12
Fort Lauderdale, FL – 5/14,5/15
Phoenix, AZ – 5/16, 5/17, 5/18
Participants receive $150 cash.
Please contact to schedule or ask questions.
Jan Mallery-Groom RN
212-217-0407 / 201-284-8201