Immunotherapy dose 2

Well my platelets are still going up! I’m at 52k today. The rest of my blood hasn’t really changed though (white blood cells at 0.9k, neutrophils at 0.3k and hemoglobin at 11.8k) so I’m still a little anemic and have a compromised immune system. My doctor does think he’ll give me my 5th dose of chemo next week. I’m currently in the IV chair getting immunotherapy (rituximab) and will be here for a couple hours still.

I’m very tired today and have been pretty achy the last couple days but again, it’s not awful. Could be a lot worse! I’ll probably get more blood work later this week and then will get treatment again next Monday. Thanks for checking up on me!

POST TREATMENT:

I had some reactions to the rituxan again today but not as bad as the first dose. I started getting hives and itching. They gave me more steroids and slowed down the IV drip. I did manage to finish the second dose but it was a long day in the chair again. I got another shot of filgrastim today and will go in for more shots tomorrow, Thursday and Friday. I expect I’ll get both chemo and immuno therapies next Monday. We’ll see.

Boosting Whites again

Got blood work done this morning. The good news is my platelets have come up to 33k. I think that means my body is making platelets again which is awesome! But my white blood cells are down to 1k and neutrophils are down to 0.3k. So my immune system is very compromised right now. I got another shot of filgrastim to boost white cell production and will get another shot of that tomorrow. We’re hoping to do some sort of treatment Monday. Not sure if it’ll be chemo and immunotherapy or both again. Probably won’t be both. We’ll see.

I reached out to Ohio State University’s cancer center for a second opinion this morning too. They seem to be the most expert clinic on HCL so I figured it wouldn’t hurt to make sure my care is in line with current research since what I have is so rare.

So GRATEFUL

This isn’t going to be a post about my physical health but I wanted to share some of my thoughts with you all. I’ve been overwhelmed with financial and emotional support the last 24 hours. I’ve been moved to tears multiple times. If I’m being perfectly honest, I was ashamed of being in this position. Covid put me in this situation too, where I couldn’t work anymore to support my family and just like back then, I was mad at myself for choosing a career that doesn’t have a safety net. But I can’t help but want to be on stage. I make more money performing than I did as a teacher and a construction worker so I always end up back to performing full time. When times are good, I’m so proud of what I do. I feel like a magician, creating joy and uplifting people with my music and performances. Finding out I was sick brought me back to how I felt back in 2020. But just like back then, you all have raised me up. I’m not feeling as pressured to get back to working a full performance schedule as quickly anymore and that has lifted a huge weight off my shoulders. I can’t thank you all enough for your generous support. I don’t think words will ever be enough. I love you. Thank you.

Resting some more

Got my blood work done again this morning and platelets are up to 18k. Neutrophils are at 0.7k (Dr said that’s good too, he likes them to be above .5). But he’s still going to hold off on any treatment today. I’m getting another shot of filgrastim which is used to help boost white blood cell production and heading home. We’re not sure I’ll get my last dose of chemo. Doc thinks we probably got what we needed out of the 4 doses and the real long term benefits (staving off a relapse) will come from the rituxan (the immunotherapy). I’ll come back on Thursday for more blood work.

I’m still a bit tired and achy but doing alright. Could be a lot worse! My immune system is still compromised right now so I need to be extra careful not to get sick. The worst part of all this is not feeling like I can do things (be social, be active, go out and about). It’s almost like not being able to do things is making me want to do more.

Tapping on the brakes

Well, my blood was even worse this morning so my doctor decided to push back treatment. White blood cells are at 1.5k, Neutraphils are at 0.2k, and platelets are down to 8k. They gave me some more steroids and prescribed me some to get me through the weekend. They gave me a shot that should help my white blood cells. And then this afternoon I’ll get a platelet transfusion.

They’ve scheduled another platelet transfusion for Monday and will check my blood Monday morning as well. We may delay for a bit until my blood improves. I’ve just been told to take it easy for now.

POST TRANSFUSION UPDATE

Platelet transfusion went fine. No complications. I’ll rest up this weekend and we’ll reassess on Monday. I’m feeling worn down but it could be a lot worse. More family comes tomorrow. It’ll be great to have them around and will be really good for my boys to have more people to play with while I’m resting. Ari is almost 4 and used to playing pretty rough with me so it’s been a bit of an adjustment these last few days. Have a great weekend! Thanks for checking up on me!

Day 4

Chemo was fine again today. No reactions. I got some new test results today. My platelets have dropped even more down to 13, so I may need a platelet transfusion tomorrow.

I also got results from my bone marrow biopsy today. Shows 50% of my cellularity is the HCL. I’ve seen people online saying they started treatment in the 90% range so I think we got after it at a good time. Also a genetic mutation was detected that I was hoping to see. Basically, this result proves that I have the “classic” HCL and not a variant. The variants are harder to treat. So this was good news.

Overall I’m tired and achy but in good spirits. I’m feeling very loved and supported. I appreciate you all!

Easy Day 3 of Chemo

Today went well. I only had a 2 hour chemo treatment and I slept through most of it. I’m feeling alright. Slight headache and still a bit tired. I may have overdone it yesterday after my treatment. They had pumped me full of steroids to avoid another bad reaction to the immunotherapy drug. So I came home feeling great. Took the family out on a light bike ride. I eventually crashed and slept hard last night.

I’m trying to stay hydrated but my lips are cracking a bit. And I’m getting more little red spots showing up all over my body (even my tongue) due to my low platelets. And I’ve been a bit stopped up and bloated. My goal today is to take care of that with some prune juice and maybe a bit of milk of magnesia.

Overall this hasn’t been so bad. I’m going to try and relax more today. Thanks for checking up on me! Love you all!

Day 2 and Diagnosis Story

Well I’m back at the Oncology office waiting to get started. Today I have my Mommy here with me. I definitely slept better last night and feel pretty good—not as nervous, not as tired or achy. I’ll update this post after treatment today, but while I’ve got some time I’ll tell the story about how I got here—

For a while now I’ve been bruising easily—I can recall thinking this all the way back to 2020. It would seem to get worse if I was also fighting a cold or flu or virus. It started to get to a point where I was suspecting I had an autoimmune issue. Well in early March, Zev (my nine-month old son) pinched my arm and it left a 2 inch bruise on my bicep that stuck around for a while. Kelli had had enough at that point and made me an appointment with my general doctor to have some blood work done. My blood work showed I had very low platelets. For context, normal levels are 137-397 K/cumm but mine was 29 (and has been very gradually dropping since my first check, down to 23 yesterday). My other blood levels aren’t great either (white blood cells, red blood, hemoglobin) but they’re just below the healthy threshold.

My family doctor sent me to a hematologist/oncologist (blood and cancer specialist) to get to the bottom of my blood issues. I got into the office the next week and they sent many vials of blood to labs. One lab tech noticed hairy B cells in my blood and that’s how they discovered I have Hairy Cell Leukemia. It seems like I have what they call “classic HCL” which is good news. It’s very treatable. Nearly 100% remission rate. I’ll have to keep doing regular blood work even after being in remission because it could come back but it sounds like it’ll be easy to kick each time it comes back.

I’ve joined Facebook groups, an online community and a HCL patient registry. From what I’ve read online, remission lengths really vary from person to person. Some people relapse only after a couple years but most seem to make it 6-10 and one man has been in remission for 46 years and going strong! They don’t know what causes this disease. There is a genetic mutation involved but they don’t believe it’s hereditary which is good news for my boys.

The initial shock was a lot for me—was feeling scared, sad, guilty, overwhelmed. But it didn’t take long for me to become very relieved and grateful for this optimistic diagnosis and for all the love and support that I have. Thanks for the prayers, thoughts, good vibes and support! Here’s to hoping today is uneventful!

POST TREATMENT UPDATE:

Today was easy. No bad reactions to the drugs today. I woke up with a bit of a rash on my right foot and it (my foot) felt warm for the second half of my treatment today but the nurses seemed unconcerned and it’s not painful or itchy. Was done with treatment a little after 2:00pm and today was my last long day. I have chemo the next three days which should only take a couple hours in the mornings. And then Monday I’ll get my second immunotherapy dose. I’ll get 8 doses in total once a week. My immune system will likely take a blow from the chemo but I should bounce back quickly and get back to my daily life in no time!

Day 1 of Chemo

Hey friends! I thought I’d go ahead and start this blog to update everyone on my journey with Hairy Cell Leukemia (HCL). Today I start my little 5 day chemo treatment. I’m nervous about putting this stuff in my body but I had a buddy tell me to think of Chemo as my friend so that’s what I’m focusing on. I had a hard time sleeping last night and I’ve read that they may give me Benadryl to mitigate any allergic reactions so I may fall asleep in the chair. Kelli’s here for moral support and to watch TV with me. I like the folks in this office. I’m being treated by Tennessee Oncology and they seem to have a good reputation. I’ll make a post later about my diagnosis story in case any of you are curious about how we figured out I had HCL. Here we go!

POST TREATMENT UPDATE:

Today was a long day. Met with the Doctor. Didn’t really learn anything new just sort of caught up. Before any treatment they give me my “Pre Meds”— two Tylenol pills, then through my IV they give me Benadryl and some steroid. These are supposed mitigate any allergic reactions to the meds. I got my first dose of chemo, Cladribine, which is a pretty mild one. It shouldn’t make me lose hair or anything. And then they immediately started me on my immunotherapy rituxen which has antibodies that are supposed to teach my body to fight this cancer cell I think.

The Chemo drip went smoothly. Took a couple hours. Immunotherapy took a long time because they were stopping every thirty minutes to check my vitals and make sure my body wasn’t freaking out. About halfway through the immunotherapy I did have a bit of a bad reaction. I started shivering (like the kind of shaking you get when you’re freezing cold but I wasn’t) and I had an awful headache. The nurses were there and ready to help me through it though. They stopped the immunotherapy drip to give me the “pre meds” again. Then we got back to it and the rest of the day was fine. Left around 4:30pm after getting there around 8:15am.

I didn’t finish my first dose of immunotherapy so I’ll have another long day tomorrow when I do the same—chemo followed by immunotherapy to finish the first dose. Hoping it goes a bit smoother but all in all, today wasn’t so bad.