So many things have happened. It's hard to figure out how to write about it without being dull and/or long-winded. So I'm going to sum up as much as I can. Ha ha ha.
So we know that F has a very rare leukemia--turns out it is more rare than we thought. To treat it the doc used Interferon A, and it worked well. However, about a year ago F started having tremors, some jerking motions, and great trouble walking and was falling right and left. On Sept. 11 last year (I was in Oregon) he fell in our bedroom, hit his head on the hard frame of the bed, and suffered a Traumatic Brain injury with a subarachnoid bleed (which means he bled between the brain and the lining around the brain). I came home, he was in the hospital for 3 weeks, most of that in Medical Rehab doing PT and OT and speech therapy, you name it. He also fell twice in the hospital, but did not hurt himself. The nurses caught hell, though.
Backtrack--we discovered that F had this leukemia around March 8th, 2010, when he had a stroke, and the subsequent MRI showed he had had over 100 small strokes. (Not TIAs.) The leukemia he has--Chronic Eosinophilic Leukemia--is characterized by causing "showers" of small strokes, so that and other stuff led to the diagnosis. So you can imagine what yet another BIG insult to his brain did. He could hardly walk at all, and listed badly to the left and leaned forward. He was released into outpatient PT and OT.
But he did not get better, so he was sent to a neurologist, who, after putting him through a bunch of stupid human tricks, said, so very casually, "Well, what we're looking at here is Parkinson's.
Color us black.
Turns out that Parkinson's, or Parkinsonian-type syndromes, can be a rare (SO SICK OF THAT WORD) side effect of Interferon A use. So he was taken off that drug immediately, and his symptoms improved greatly. S0metimes they do go away. However, he is still on a Parkinson's drug, just in case.
But he just wouldn't get better--I mean stronger. His eosinophil counts stayed good (that's how we track the leukemia--sometimes people on Interferon A go into remission--looked like that was happening). But he had what I came to call "spells," where he would sleep for hours and hours and it was very hard to wake him up. He also snored loudly sometimes. I told our regular doc about this and he shined me on, oh, paranoid wife. Just wake him up and make him do stuff he's depressed you should work with him more. Well, I fired that guy. Hired another better doc. And this doc--oh, did I mention that F fell three more times after the big head injury and had a concussion each time?--sent us to a Faint and Fall clinic. And they wanted F to wear a Holter (sp) monitor for 48 hours to make sure it wasn't anything to do with his heart (holter's record your heart rate). So we were at the hospital getting ready to get said monitor--F was in a wheelchair--when he just sort of withered. He crumpled over in the chair. I tried to get him to talk to me, but his words were very quiet and hoarse and slurred. I was SURE he had had another stroke, so was the nurse at the desk. So off downstairs to the ER, where they were also sure he had had a stroke, and into CT to make sure--but no sign of a stroke. But he was having one of the "spells" I had seen so many times before. The docs were stumped. However, while they were trying to figure all this out, they observed what I had been seeing for months, and made the following discoveries:
His blood pressure was in the basement low (at one point 80/42). His heart rate was VERY low (48-55). And he would stop breathing for over 10 seconds at a time, then make a terrible gasping noise. His body was really under stress. And after watching this for a while several lights went on in the head doc's head--she told me that when someone has had a lot of strokes, and their body gets super hammered, their body can "mimic" a stroke. There's a 25 dollar word for it that I did not write down. So that explained the non-stroke. But what about the other symptoms? Well, the upshot was that he has bradycardia--chronic low heart rate--low blood pressure that drops over 20 points when he sits or stands up (that's called orthostatic blood pressure and can certainly make you unsteady--hello, falls). And the not breathing--sleep apnea. Duh.
So. He has had a sleep study, we're waiting for the results. (Like there's any doubt.) We're also waiting for the holder monitor results (they take forever to read). He'll have to deal with a cpap machine, and possibly a med for his BP, and, if that doesn't bring up his heart rate--a pacemaker. But the big point to all this is they FINALLY saw what I was seeing, and there are reasons it was happening, and now we can focus on treatment. So let me hear a resounding YAY.
But.
After 7 months of good eosinophil levels, his levels started to go up. Not much at first. Then more. Then they hit--not a really dangerous level--but a level on its way to dangerous. Possibilities included more strokes and, worst case scenario, heart failure.
Problem is that we have run through almost everything that treats this stuff, except one drug. And that drug is in trials. Our doc tried to get F on it two years ago, but they would not take him--at that time it was only approved for eosinophilic asthma. God I'm sure this is boring. But since then, it was approved to treat F's type of leukemia, IF the trial subject qualified for "compassionate use." To prove compassionate use, you have to have tried at least 3 conventional treatments that have all failed, you have to be in bad shape, so bad that if you don't get the drug, death will be the result. SO scary. And here we are/were, having to face all this lovely info.
But our doc is the top doc in the world in this disease, and F has failed on four different therapies, and his count is going up, but most importantly--GlazoSmithKline? The company running the trials?--owes our doctor BIG TIME. He wrote a lengthy paper convincing the FDA that this drug--mepolizumab (say that fast 6 times)--is a good drug. Last week the request was sent in, and we settled in to wait.
We got the word this morning. F has been accepted! I cannot even begin to tell you how excited we are--still scared--but thrilled! From here we wait for GSK to send papers for F to fill out, and then we go to the hospital to their research center where he will get his first infusion of the drug. Here's the beauty part. NO SIDE EFFECTS. And he will only have to have an infusion, at most, once a month. HAPPY DANCE! In time, he may be able to go months between infusions.
OK, I have caught you up I think. And here's the point of this whole long post--it is long, I'm so sorry--but there is a small chance the drug won't work. And so I am asking those of you who pray, who send good thoughts or light, or burn the sage--I DO NOT CARE--please send good stuff this way. F needs this. While we were waiting to hear about the study, I said to a friend, if we get the heart and bp and apnea and head injuries under control and then he dies from the damn leukemia...I couldn't and can't finish that sentence.
What I say to F--damn, my love, we can't kill you with a stick. (You can take the girl out of Texas...) But I think we can all agree F is one tough SOB. He is fighting with everything he has. So, if this moves you, please add your voice(s) to the fight. I can't tell you--there are not words--to tell you how much you all mean to me. I have seen over the years that you care. Thank you. Thank you from both of us, from the bottom of our hearts.
Now--can I manage an lj cut?