Well we are still waiting for the final results of my BM biopsy, which is why we waited until now to write anything up. One good bit from one of the tests is that I am 100% donor! But its the FISH test that really matters. And this I don’t really understand. If I am 100% donor (mind you that is just a random sample from say a million cells they take from me and they only analyze 200 of those cells again chosen at random, I assume), then why is the FISH test saying they detected my MDS chromosome 7 abnormality (that was from the last BM biopsy, not this one)? Some answers to questions I need to find out. Chromosome 7 is a deadly bitch of a mutation. And in 80% of transplant patients it leads to a relapse within 5 years. So we have another week to wait. I have a new complication, but its a watch and wait treatment plan. Otherwise, things are status quo.

beach-footsteps-copy-copyThis is why they are being more aggressive with reducing my immunosuppressant meds so the donor cells can kill it off. At the same time my GVHD, which has been mighty quiet as of late, will come back and has. GVHD is a blessing and a curse. You want a little bit of it, because it means that the donor cells are killing off your old blood cells and some other organs cells. The curse part is getting too much of it. Because it does kill off some of your other organ cells. Depending on the person and how they treat their body (and genetics), your organs are healthy or not depending on how you eat, drink, etc.

I’m getting back into a routine to heal and recover. Gonna try to stay away from viruses or other evil things that we call germs. I need that. I really need that.

And from here it gets a bit personal.

To quote Jimmy Buffet, “I treat my body like a temple, you treat yours like a tent”. I did both throughout my life. The last 7 years, except for an occasional drink or five, my body was a temple. Certainly an old temple that needed some loving. After all, from 14 to 40 it was mostly a tent, or at least a rental apartment. So can 7 years of refurbishing make up for 26 years of drinking, the other stuff I quit by age 20. I don’t know. Thank Dog I was a teacher for most of that time… you don’t go to into a classroom hung over. Did it once and never again. So I guess that made me a weekend warrior! Anyway, too much information for those who don’t know me, but there are lessons to learn from what other people do.

Discovering I had MDS made me realize what was important in life, what I valued. It certainly changed how I lived and the relationships I have for the better. Yes, there always was a cloud hanging over my shoulder ready to strike with lightning. And it did. I took a very stressful job, but one I truly loved. I got to lead a dream team of people in creating some really great courses. I was stable for almost six years and stress is a mean SOB. I got complacent with what was really important… my family. And I paid the price. Treating your body like a temple does work. It won’t cure you. But it will slow down or stop the progression of a disease. Stress takes all the good you do and destroys it. That is how I see it and how I will live my life in the future. Low or no stress. My goal is to live long enough to see Caitie and Kai become adults, to be able to guide them in that journey. After that… is extra time to spend with Terri and family (my friends are included in my concept of family).

Now a bit of sad news. My Mom was diagnosed with ALL, a type of leukemia. Last word is that she is not willing to go through chemo, its not as bad as I went through, but then I’m not 73 years old. I’d like to see her live several more years, but its not my decision. I hate that we do not have a cure for this or all cancers. You know how I feel about it, if not read my cancer treatments post. Her name is Linda, so if you have an extra prayer, positive vibe, or some pixie dust, throw them her way. One group is actually trying to do something about this, Stand up to Cancer, check them out.stand-up-to-cancer

~ Mark

(from terri:)

Aloha!

Honesty time – this part of the journey sucks. One reason that Mark’s doctor held off on the transplant was quality of life before and after treatment, implying that quality of life post-treatment would not be so hot. Now I understand. We knew the road to recovery would be a long one. It is another to live through it. Yep, I am on this road with Mark, experiencing the good, the bad, and the ugly. The only thing I have freedom from is the pain and discomfort Mark feels. Honestly, he feels crappy. I guess, that although I knew the recovery was going to be long and slow, I expected steady improvement, a little better each day. And sure an illness or two, but not how bad it would knock Mark back on his ass. So this is tough to watch. Yes, he is getting better, but it is baby steps. Don’t get me wrong, it is better than no improvement at all. I am just saying basically that this is hard. I wish someone would have just said before we went through the transplant, that recovery is going to be a bitch and we can’t really tell you what to expect. But expect complications and having to deal with those. It wouldn’t have changed anything, we still would have gone through with the transplant, but maybe would have been better prepared for what comes after. I guess it is like having kids. Until you have them, you have no idea, no matter what anyone says, what life is going to be like, until you go through it yourself. I don’t know if any of that makes sense.

But!… I still know that this is all worth it and in the end life will not be so hard and Mark will be back to his old self… maybe with some small adjustments.

Hearing that he is 100% donor was a great relief, and I am hoping for good news on the FISH test as well. His blood counts, especially platelets, are starting to creep upwards. Baby steps, but up is good. In addition, they have decided that he is going to get the IV-IG treatment once a month for 6 months. That was the one that is super expensive and insurance didn’t want to cover. Doctors are hoping that will give him a little boost, and help keep any infections at bay.

In other words: There is fog in the mornings (like June gloom on the coast) but the sun breaks through and you can feel the warmth on your face and know that things are going to be good. And somedays, oh mah gosh: Look a rainbow! Still knocking on wood and hoarding pixie dust…

3 Comments

  1. Mark, So sorry to hear of your mother’s condition. Glad, though, that you are a 100% donor!!!

  2. Remember all good things come with time. the waiting is the hard part. Lots of pixie dust coming your way. I know you must have so many mixed feeling about your mom’s illness, let us put our trust in her to make the best decisions for herself. Our prayers and knocking on wood for her.

  3. 100% DONOR!!! YaY! Surely the FISH test will come out swimmingly!

    So very sorry to hear of your Mom’s cancer, while its her decision on how to battle her own illness, she has an amazing son whose love and support will see her through come rain or come shine. Linda will definitely be in our prayers and I’ve recently found a mother lode of pixie dust in an enchanted cavern which will be sent to you and your mom ASAP…

    Sunshine, rainbows and lotsa love ♥