Dates escape me, weights are inaccurate, sleep is my enemy, and I have diabetes. Last we talked I was bottoming out. In the past ~38 days almost everything has gone as I predicted then. We managed to get my blood product to stabilize. White, red, and platelets were all headed south and now they are all on the rise. Platelets are still low but I haven't needed a transfusion in almost 4 weeks. Previously transfusions were every 3 days. My weight is currently about 146, so I'm almost 9 pounds up. That is a very strange 9 pounds, mind you. It consists mostly of fat and water. It seems like Cushing's Syndrome decided now was its time to shine.
Diabetes deserves it's own paragraph, don't you think? So it is real, plain old, adult onset diabetes. I take a finger prick 4 times a day, I take 10ml of Lantus every night, I require 1-3 insulin shots a day, and without doing all of that my blood sugar level hovers in the upper 200 to lower 300 range constantly. No one in my family, including my distant relatives, has ever had diabetes. I'm the winner! In all likelihood the steroids induced the diabetes. Hopefully the diabetes will just go away at some point in the future. However, the doctors have said that they can't make a guess and that they have seen this often and they've seen it go both ways down the road. We shall see, our good friend time will surely tell us one day. Until then, hold the sugar.
My dietary options continue to expand. My stomach, liver, and kidneys seem to be holding up well enough. The only issue I've run into is in relation to highly acidic foods. Apparently they'll lead to heart burn. Who knew? Yeah, everyone else knew. I've never had that type of heart burn before, unpleasant it is. I limit highly acidic foods. Beyond that I eat what I want when I want, it is great. The only downside is what the radiation and chemo have done to my taste buds. It'll be a few more months before everything tastes the way it should again. With fork and spoon in hand, I look forward to that glorious day.
A while back I had bone marrow biopsy number seven. Six or seven, who can count? Anyhow, it was far and away the worst biopsy of them all. It was as bad and as long as the previous worst two put together. The pillow I bit, swore, and yelled into will probably never be the same. I'm guessing the poor PA, who was performing one of her first biopsies on me, also won't ever be the same. I take no comfort knowing that her day was also ruined by my biopsy. I won't go into all the details but I will say that I won't have another biopsy without very serious sedation, likely general. This still ranks as only the second most painful experience of my life.
Before going further, and there is a bit further that I'm willing to go, I'd like to share with any who don't already know: The bone marrow results indicate that I have no detectable leukemia at this time. This doesn't mean that I can't still relapse later, I can. We all hope I won't, but I'm just putting it out there so you know. Also, there was 100 percent Jennifer cells inside my marrow. This is also very good news. None of my cells remain to fight her cells and her cells are there to fight off any leukemia that may lurk. All my blood is girl blood, baby!
Here, we'll play a fun game where I rank the pain I've experienced. Pain is fascinating, especially the idea of trying to quantify pain in a universal or objectively meaningful way, which you absolutely can't. The worst pain, #1: violent rigors brought on by sepsis is the only pain I've known that I still fear and dread; shaking so violently that I passed out repeatedly from lack of oxygen. That last biopsy is #2, nothing like repeatedly puncturing bone and extracting marrow if you're looking for a cry of pain. Other biopsies take spots #3 and #4, I was 32 and 33. Breaking my arm takes spot #5, I was 31. Running my foot through the front gear of a bike and the attached chain is #6; I was 7. A wart removal attempt when I was 11, not numbed properly, the doctor got the needle stuck in my bone and couldn't pull it out, that wasn't even the most painful part of the experience; that's #7, I was 11. I was hoping to see a top 10 but I don't think I've had all that many extremely painful experiences. I'm a very careful person. As you can see, only 2 of the above were self induced.
My current challenges include remembering to take my medicine and staying on top of my diabetes. I'm also not doing well with diet and exercise. I generally don't get more than 6 hours of sleep a night and that leaves me uninspired when it comes to staying on top of the day-to-day. I need to start gathering data, showing myself some improvement. That always helps. The problem is starting that process. I'm all over the place in my daily schedule right now. It's time to streamline and pull it all together, work harder at getting back to a normal life. My bone marrow density is 30%, I experience frequent fatigue, I can't control my muscles (this morning my chair ate half my breakfast), and I could go on and on with the physical annoyances that plague. I don't really let them stand in my way though; I find ways to ignore them using various workarounds. What I'm rambling about here is a need to refocus, take that away from this awkward paragraph.
The family is doing great. Jonas and Max are loving school, they both think the teachers they have this year are great. Emily is still adjusting to here new role as Accounting Manager at OrangeSoda. She loves working there and loves the people, once she's more familiar with her current role I'm sure she'll love it even more. I'm able to do some things around the house. I take care of the boys after school and get them sent off to school in the morning. I do dishes, take out garbage, clean up in various other ways. I'm not able to vacuum, dust, and the like due to the tacro and my complete lack of a functioning immune system. I also can't perform yard work or be exposed to the sun for more than a few minutes a day. However I am to the point, finally, where we can enjoy tabletop games together and other sit down type activities. Fancy, eh?
It's been good to get out my monthly post. Perhaps I can start posting with greater frequency soon. I hope all of the lovely readers and their loved ones are doing well. Take care.
Photo of the day, me after visiting the ophthalmologist several days back. I wanted to do this as an extra large photo but, frankly, even I found it too scary looking; enjoy the medium size Ryan:
Yay! I love you. You are the very bestest little brother ever, ever, EVER!
ReplyDeleteDefinitely your best. ;)
DeleteGreat to hear Ryan! Hope it keeps getting better and better.
ReplyDeleteYou are so amazing I dont think I could endure all that pain I would feel like giving up. you are a strong person ready to fight threw all that comes your way. Im so proud of you for being strong and doing everyting you can to come out a winner. It seems like things are at their worst something else always happens when you think you have enough problems. Im so glad you are with your family and things are well with them. Good luck Ryan Stay Stong and Live Sucess is what we are cheering for thanks for the update
ReplyDeleteGreat picture! I for one think it would have been great extra large. It's nice to hear how you're doing. I really hope this baby finally gets better so we can come visit you, it's been way too long. We have to take advantage of the fact that you can play games now. See you soon!
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