Ever wake up after getting some very unexpected, difficult news and find yourself shaking the fog from your head trying to remember if it was real or just a dream? Feeling that way today.
I’ve known for months that “something wasn’t right inside” but I had no idea how serious it was. The fill-in Oncologist (the lady I’ve been seeing since Nov. left last week on maternity leave) happens to be the head of the whole Provident Oncology program and is everything the former Dr. wasn’t -very informative, very concerned about the advanced stage of my disease, and very experienced with this rare disease.
He squeezed us in between other patients (so we didn’t have to wait till Wed) and spent 20+ minutes explaining how my Positive Myelofibrosis differed from cell-based cancers of the blood system. Common cancers are generally mutations of cells gone haywire and can often be remedied by wiping them out (chemo) and getting a fresh start. With my condition, the haywire units aren’t cells but genes that produce a fibre-ish stuff that surrounds the productive red/white/platelet cells in the bone marrow. And, in this case that fibre has decided to multiply mercilessly which meant there was no room for the blood-making cells to stay there. On top of that, the fibre essentially becomes a scar tissue, hardening the core of the bones and “killing” them.
After the Dr. attended to another patient he came back for another 20 min. to discuss “treatment” and prognosis. He mentioned the conventional treatment -(urea-active ingredient in fertilizer, terrorist bombs, etc -he didn’t actually mention this part, I got that from wikipedia) could be used to kill excess white blood cells in my spleen which should, in turn, diminish the size of the spleen which should, in turn, make more room for my stomach which should, in turn, mean I could eat more good food rich in calories. He seemed to think that the 15 lbs I’d lost in the last few weeks wasn’t going the right direction and that my body was devouring itself just trying to keep the remaining organs functioning. Oh, I forgot to mention that the spleen remembers how to make blood cells because that was it’s job in utero. So, since my bone marrow crowded out the factories, the spleen (and liver) took over besides doing their regular jobs. Dr. Lechner even said he’d give me a candy bar if he had one in his pocket -just to get me some calories. You see, following recommendations from others I’d restricted my diet to fruit and veggie drinks -lots of enzymes, no calories.
Back to the treatment: A new drug has been developed in the past 3-5 years that attempts to slow the scar tissue development, thus adding months to ones life. If I could qualify for that and afford it ($3000-$5000 per mo) they’d look into getting it for me. Thankfully, the team at Providence is very diligent to find financial aid for folks without insurance!
Well, the question everyone is asking, I asked. Finally. “So, doctor, do I have 3 weeks, 3 months or ? ?” He looked at me and said that he wouldn’t put it at 3 weeks but if things continue on the present course I probably don’t have 3-4 months before the disease will finish my last chapter on terra firma. Needless to say, that was sobering. Besides, I’ve felt SO WEAK for the past month, accompanied by constant pains and so unable to concentrate on anything for more than a few minutes, I wasn’t sure I’d want to hang around longer than that anyway.
But, the good news is that CALORIES (and prayer, to be sure) have come to the rescue and some good sugary treats after the Dr. appt. have all but eliminated the dizziness, pain, and foggy thinking. In spite of turning my abdomen into a war zone last night with the new urea medicine, I slept more solidly than I have in a week. I’ve been able to walk upright and spend long periods of time on the computer (i.e., this LONG blog).
So, bottom line: I’m going to die. But so are you. I just have the benefit of knowing roughly when so I can spend the next weeks on the most important things. Thanks for keeping our family in your prayers.
Lord willing, I’ll be keeping up with this blog in the days ahead.