Update On My Health
In order to keep everyone up to date in the most convenient way possible, I’ve decided to write about my ongoing health adventures here, on my website, rather than repeating myself to texts to all my friends and family constantly. (Click the Read More link below for the details.)
First a summary of what’s happened for everyone who is just finding out. (If you’re just finding out and felt I should have told you, I’m sorry, just had a lot on my plate, so-to-speak.)
So I wasn’t feeling very well since about the first of February, I passed out once, and I had a headache the first week. So I went to see a doctor who helped me with the headache but wanted to know if I fainted again. I think it was two weeks later that I fainted again, so I went back to the doctor, he ordered a blood test, which I got done the next morning, and that evening, Thursday the 19th (I think), he called me and asked I go get a blood transfusion immediately because my hemoglobin was very low, which would explain the fainting. He also informed me that the blood test showed a concerning number of young immune cells, called blasts, so he had made an appointment for the next day with a hematologist/oncologist. While I was at the ER in Manchester waiting to get a blood transfusion, that hematologist oncologist called me and told me I had leukemia and needed to be admitted to a larger facility right away. They thought about Mass General Hospital but were concerned they wouldn’t have a bed open, so instead they rushed me up to Dartmouth Hitchcock Medical Center in Lebanon, NH. They did a biopsy and determined it was Acute Myeloid Leukemia (AML), and began a round of chemotherapy which took seven days. Then we waited another seven days and they did another biopsy, which showed about 5% of the leukemia cells remained, so they began planning a second round of chemotherapy. (UPDATE: A friend asked me about this detail, whether that 5% should be easy or hard to wipe out. I don’t know, but I can say I was told that about 2/3rds of AML patients respond well enough to the first round of chemotherapy to go into remission, so about 1/3rd need a second round, and I was told about 2/3rds of those who receive a second round go into remission after that. I don’t know if that trend continues into additional rounds or what, but it seems there is a long tail on how resistant these cells are being treated.)
In the meantime they also sent the first biopsy to a lab for cytogenetics, where they found the specific chromosomal abnormality that led to this was an inversion on chromosome 3. That’s not great news, and probably means I’ll need a bone marrow transplant sometime in the next few months, but at the same time it looks like researchers are just beginning to dig into the chromosomal details of these things and only beginning to learn how different causes might be best addressed.
There have been some ups and downs along the way, while at the hospital I had a number of syncopal episodes (fainting), and developed some breathing issues, though the syncopes all seemed cluster around a week ago, and the breathing has improved tremendously.
That brings me to today, March 10th. For the last few days we (the doctors & myself) have been mostly ready to start a second round of chemotherapy, but they (the doctors) spent a few days deliberating over which treatment precisely would be the best. There was concern for the effects on my heart, because I have had a pericardial effusion (some fluid between my heart and pericardium, the sack that protects the heart), and they didn’t want to exacerbate any heart issues. Normally cardiologists will simply put a needle into the pericardium and drain the fluid, often installing a drain to help avoid more fluid buildup. (Too much fluid can cause pressure & strain on the heart, and decrease it’s pumping power). But because the point of the chemotherapy is to wipe my bone marrow clean, my platelets (which stop bleeding) and neutrophils (which are sort of first-responder immune cells), are very low, and so there was some hesitation to stick a needle in me due to concerns for bleeding and infection. However, apparently the inversion on chromosome 3 may have made my platelets recover a bit faster than normal, and they’re pretty high now (238, they were 35 two days ago), and so bleeding has become less of a concern.
So ultimately we decided it was best to drain the fluid now while the opportunity was best, before beginning the second round of chemotherapy.
And so that is where I am right now. Waiting to be whisked away to have a needle stuck near my heart and fluid removed. And if all goes to plan tomorrow morning I’ll start a second round of chemotherapy.
That’s all for now, thanks for taking the time to follow along.
UPDATE: Feel free to post any questions you have as comments below, and I can answer them, that way if other people have the same question maybe they’ll see the answer too. Though if you want to be more private and contact me directly that’s okay too.
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Cody, I am glad you are improving and are in good hands with all the experts. We are sending you positive energy from Southern California! Love you tons cousin!
Hey Cody, that was a lot of info for you to put out but a smart idea like you said, so you don’t have to spend time repeating yourself… We have been researching stuff too so we can keep up and learn as you go through the steps .. Your next procedure will go as planned and you will be ready for the next round … Thanks for sharing and we will keep up with you as you post again. We are all thinking about you and wish we were closer to lend more support but we are sending hugs and strength from the west coast.
Thanks for the update, Cody. The third step if the second infusion sounded like it would be stem cell transplant rather than a third round of infusion. It was almost an aside from the last Doctor as he was leaving the room. But you maybe know more now. Love you dearly! See you Saturday!
Hi friend of Cody’s … Thanks for being there with him and doing his update … Cody I’m sorry the procedure was painful but I am glad it is over and you are breathing better… Keep up the good work on the spirometer. So now you will have chemo today and the next 6 days? Stay strong cousin and we are thinking about you all day as we go about our busy days you are never far from our thoughts … Hugs
Thanks Lara, one day down five more to go!
Thanks for the update, and I too am glad you visit and help Cody! He is always in our thoughts and can’t wait for him to feel better.
Cody, sounds like a rough day, wish I could do or say more to help you through this. I know you are in good hands there. On a different note, I don’t know if you remember how “not” tech savvy I am, can barely use my phone sometimes.. Ughhh… But somehow while on your site I ended up being able to see all the pictures you have taken and stuff about your app….. Totally blown away and amazed by the pictures you take, the snowflakes, raindrops on the fungus and spiderwebs…. Love all of them and wonder why these aren’t up in a gallery somewhere?! I want some of them for my house!! Anyways, was great to look at all of them and get a better insight to your app too.. Stay strong and positive even at the yuckiest moments… We are all pulling for you every single moment. Big hugs
Probably felt good to have a shower but not the passing out part… Making great progress on the spirometer which is awesome… That is super important. Resting is all you can do with this week long chemo so don’t worry about trying to respond… We know you will keep moving forward…..