Long time since I’ve kept you up to date. My bone marrow transplant has failed and we gave it 8 months to try to recuperate and it hasn’t cooperated at all. So I’ve chosen to go off of all medications, all chemo, and go under hospice care to see what will happen there. This started last weekend. I don’t feel any better…I’m still very tired, I can’t walk, I have Greg and Kerstin and Peter to carry me around. Fortunately I’ve lost about 30 pounds so that helps them. I know a lot of you have been praying and wondering what’s been going on, and I appreciate those efforts on my behalf. I love you and will keep in touch.
Well, not much happening really. I was back in the hospital in Oct. for “pneumonia” and it actually was a cold. Beginning to dislike hospitals. Since I’ve been home, I’ve had a broncoscopy to uncover a CMV infection in my lung and am being treated for it.
I started on high doses of cyclsporin and my red blood cells are living longer.
Now it has been 2 weeks since I received RBC’s and expect my counts to last to the end of the week. I still need platelets every 2 days. But I keep my eyes on those numbers, too.
They performed a repeat bone marrow biopsy Mon. Hopefully there is a clearer picture of what’s happening. One of the drugs I was on, fuzzied my results before. I wasn’t in pain till after when I felt like they dropped me on my hip, which they did not!
The drug is really strong, makes me feel cold and I rest a little more. I’m keeping the highest dose now, til something stabilizes in a year or so .
So back to waiting for 10 days for results. I am more optimistic than the director is, but is some reason I get to experience all thia
Well, we were hoping my own bone marrow would recover and produce the cells I need to sustain life. So, we decreased the anti-rejection drug cyclosporin and watched. My blood cells plummeted and I am receiving RBC’s every 5 days instead of every 4-6 weeks and platelets every 2 days after not needing them for 4 months.
Didn’t work! We have increased the cyclosporin to a therapeutic level and will wait and see. I didn’t need platelets this morning and they think I’ll last till Monday. They’ll be really low on Monday, but they have a unit ready for me.
We are praying this direction will return me to a life sustainable cell count so we can let the donor bone marrow start producing the cells. My bone marrow isn’t able to do the job.
What a roller coaster ride. It’s only been 5 1/2 months since the transplant and we need to be patient. It could take another year, easy.
Well, the days of stable counts are over for now. My WBC’s, RBC’s and platelets are all down and requiring transfusions to sustain me.
The doctors are puzzled, so I am having a bone marrow biopsy on Wed. to see what is causing the change and to suggest a treatment plan.
This is so weird. It may be my auto immune disease or a new disease. Time to find out what we can do to get this back under control.
I feel ok and I look fine according to everyone who see me. But, something is happening and it is time to find out what!!
I had a great visit with my son from CA over the weekend. And I’ve had great talks with my daughter and news she’ll have another business trip here in Jan. They both have taken time to visit and support me!! I’m so lucky to have them. Family definitely helps!
I have weekly blood tests. I feel fine, as usual. So how come my blood counts keep going down? Even with the Neupogen, my WBC has gone down. And so have my RBC’s and platelets. The platelets had been fairly stable for about 5 months and they are going down and my transfusions help me about 5 weeks. It’s only been 2 weeks since my last transfusion and the count is decreasing already. I hope I make it another week.
My doctors say to expect the ups and downs. I have another blood count on Wed. and am looking for the “UP” part of that advice.
Looks like this will be a wait and see event. The director of the facility here was at a conference in Seattle, WA at Fred Hutchins hospital and used me as a unique case. They all agreed that another transplant is not recommended. I am disease free so far and that is good.
So, we will support me as necessary until my bone marrow replenishes itself. That could take months up to a year or so. I receive transfusions every 5-6 weeks, not bad actually. If I were in bad shape I’d receive them every week. I haven’t needed platelet transfusions for 4 months. My platelets are dropping slowly, but the doctors say not to worry. They will go up and down in the process. The only unknown are my white blood cells and I am receiving Neupogen to stimulate them and remind my bone marrow to get in gear and produce them on their own.
So, it’s not for me to sit around and worry. I still get tired, but am up and around and out a lot more. Our cruising and traveling days are limited for the time being. Peter is chomping at the bit to travel and has our next trips planned as soon as I get the word I can fly!
Life is for living and that’s what I’ll do.
At my last doctor visit, my counts were stable, even if it took drugs to accomplish it. I got 2 weeks until my regular check up in stead of one. We’ll see how stable they really are!
I have two options just now for my recovery. We are looking for another possible bone marrow donor, using my son and sister as haplo ( half) DNA matches and looking in the Bone Marrow Bank for maybe a new untapped donor. We tested my daughter and I have antibodies against her and she’s not a candidate. I have major antibodies that I have developed over the years to complicate donor matching possibility. The testing is in process and maybe I’ll know by mid-end of September for the haplo-identical transplant. It is an experimental option, but has great potential once it tis perfected in the years to come.
The other option is to endure and go day to day. I have to wake each day and plan what I can accomplish that day. Sitting doing nothing is mentally and physically deteriorating. I am getting stronger and have energy to walk a little and do service projects as long as I pace myself and throw in a nap now and then!
So, when I say enjoy each day as it comes, I pray my counts will remain stable and maybe even improve on their own. That is my second option for recovery. The doctor sees my stability as good for now and encourages me to get out and get a life. With the WBC booster drug, Neupogen, I don’t have to fear infections as before and may as well go to meetings and lunch and movies as I want.
I’m feeling stronger, although that doesn’t reflect my actual leukemia status. It doesn’t matter. I do as much as I can when I can and enjoy life!! Hope you do, too!!
Wasn’t feeling so emotionally good last week. Cell counts going down and having to go on white cell stimulant shots to protect me from infection. Then I heard that Kerstin cannot be a bone marrow donor for a second transplant due to my antibodies that are partying up a storm against her and everyone. So, I didn’t say or do much.
But a week has passed. We are mostly waiting for my bone marrow to self kick start now that the disease is gone. The donor transplant was successful in accomplishing that. Yea. A second transplant within the sister / kid range is possible. Kerstin is out. Greg is being tested. I bet antibodies will be an issue. We will look at my sister’s DNA results and reevaluate her now that we are considering a haplo transplant ( 1/2 matched DNA) within the family.
And my counts have stabilized. The white count medicine is helping and platelets stopped dropping. It was the platelets that concern me the most because we are not doing anything but letting my body respond and they were doing great by themselves and then started to drop. So, today I feel good!
Physically I am getting stronger. With my white cells increasing, I can get a life and attend social functions, especially if outside or small groups. attended a fun picnic and baby shower. A movie is on the docket for Friday. The doctors and I agreed to ‘ get a life’ within reason. I still avoid the crowds at church with lots of kids and soccer games ( go Real Salt Lake).
So, I am emotionally, physically and spiritually back on track. My love to yu all.