Thursday, March 20, 2008
After more than three weeks I finally got one of the two bone marrow biopsy tests back.
IT"S GOOD NEWS!!! REMISSION REMISSION REMISSION (or almost confirmed)
For those of you with CML, my PCR test is 0.06%. Which means I have a 3 log reduction in the presence of the 'philadelphia chromosome' at my molecular level. When the remaining cytogenics test comes in, if it is 0 out of 20, then I am in REMISSION. woooo hoooo!
For cancer at the stem cell level, I need three things to be in remission: 1) Hemotological response (Check) 2) Complete Cytological Response (0 out of 20 test) PENDING, and 3) the PCR molecular response is a 3 log reduction--a reduction of three decimal places. (Check).
It's unlikely with such a low PCR that my cytogenics won't come back 0/20 but still....
Now, my goal is PCRU, which means the canser is UNDETECTABLE via the most sensative PCR test.
Thanks for your support while I have been WAITING!!!
Peace and love,
PS. Blood pressure is the same. Haven't passed out. Walking the beach and celebrating with a couple of days OFF.
PSS. The 'ASS' gene (part of chromosome 9) is still missing except in my PANTS!
In case you want more info on the subject of PCR and CML remission: http://www.cmlsupport.org.uk/?q=pcrresults
Sunday, March 16, 2008
Yes, that's three weeks since the bone marrow biopsy and there's nothing to report. It would be nice to think that no news is good news, but I think that once the doc says 'it's cancer' those days are gone. The waiting is torture, and each day I come up with something else to explain just what I would take in the place of waiting. Example: I'd rather clean three bushels of catfish than wait another week for these results. Or, I'd rather clip the dog's toenails... (wait dogs don't have toes do they? You know what I mean.) In any case, I really want to know the test results.
Or maybe I don't want to know the test results. I feel better, so maybe I am better. Funny thing about canser is that the disease doesn't always make us feel as bad as the treatments do.
Last week I went to the doc for more blood tests (still no bone marrow results) and the blood tests didn't come back so great. I felt pretty good, and yet the tests weren't so hot. My platelets are dropping, I am more anemic, and my white blood cells are rising. Wild combo. I'm sure I need to stick to the raw food and green drinks more, and less Cheetos. (yes, I'm a heathen who ate some cheetos in a fit of depression what can I say.)
And my blood pressure was 'too low' if there is such a thing. (Cheetos may help aye?) The docs kept taking my blood pressure over and over and asking me if I felt light headed. My response, "Well... you have taken my blood pressure three times in the last 5 minutes. I think all the blood in my body is in my right elbow now." The docs then suggested they cut back on my blood pressure medicine because it was too low. I reminded them that I am not taking any blood pressure medicine. Now what. Their suggestion.... try not to pass out. Ok, no problem.
So for the past week I have been actively trying to NOT pass out. How does one do that you ask? Well I don't know and they didn't tell me. So far so good. To say the least I am wearing my seat belt all the time now. I suggest you do the same if I'm on the road.
The bone marrow doc and his team are really nice and funny. After all the poking and prodding he suggested that I work on my fatigue and bone pain with more exercise. Ok, I am happy to do so, but time is short these days with work, kid, laundry, cleaning, dog, grocery shopping, and raw food preparation. I am working on more exercise so I can be ready for any potential bone marrow transplants that may come my way. ugh. The doc said, "think of it like training for the Olympics. Be ready for the race of your life." I think he meant 'race for my life' but you get the idea. I always thought Olympic folks trained all day. I really can't keep up now, but I suppose training will help structure my life even more. yeah.
The insurance company has denied my 'harvest and hold' of my own bone marrow/stem cells if I get to remisssion. But, the insurance company has approved a bone marrow transplant from an unrelated donor. It's very confusing. Good news is that somewhere in the world there are two potential matches for my genes. Wierd concept considering that my own kinfolk aren't matches so far, but a stranger somewhere in the world has my genes. Perhaps my dad has some explaining to do? hummmm. Just kidding Dad.
I realize that finding potential matches is a good thing. Now the bone marrow 'team' has to confirm that the potential donors are still alive (always a good start) and if there is any new information since they registered as a donor. It's an expensive process, relative to say a new mercedes. But it is the race for my life. Mind you, they haven't confirmed at least to me that this transplant is necessary yet.
Perhaps that's why I'm nervous. I don't have any proof that the medicine is working. I don't know how long it will work even if it is working. I know that my wierd translocation is not as 'treatable' as regular CML. But truthfully at this point, I don't know what I know and don't know any more. Confused? Welcome to the party.
Speaking of party... in the middle of all the medical marvels, Lili and I had some of her friends and kinfolk over to our house for a mini 15 birthday party. It is a traditional Mexican 15 party complete with fancy dress, big flowers, and a crown for Lili. (Hey, when do I get a crown?) Melody made the cake, friends took photos, and we hung out in the back yard with some dancing and lots of smiles. It was a great day and a great way to remember life happens EVERY day, even on days when the test results don't come back.
God, please send patience, not tests for patience. And, God while you're sending stuff, please send an Olympic trainer/housekeeper/raw food chef/comic/sensitive but masculine (not gay and not married) man to keep me on track and smiling. I'm tired and I think I've decided to not have canser anymore as it's really cramping my style.
What say you? Comments anyone?
Lots of love,
PS. Bone marrow tests should be back by the 26th of March. Only 10 more days of waiting.
PSS. Yes, the 'surprise, surprise' is a reference to Gomer Pyle.