Hey friends! So happy to announce I am cancer free. I did a follow up bone marrow biopsy and CT scan and my biopsy found no hairy cells, no genetic mutation, nothing abnormal! And my CT scan showed that my spleen and lymph nodes have shrunk back down. My platelets are the only thing in my blood still lingering below “normal” at 114 but I expect they’ll crawl back up with time. Everything else is right in the middle of the normal range. Not even on the low side anymore. I’m so incredibly grateful. Thank you again for prayers, thoughts, all the love and support. I’ll keep getting my blood checked pretty regularly (every 3 months for now) but I think this is the end of my blogging. My doctor didn’t think my foot pain is treatment related so I’m just going to focus on building my stamina back up and staying healthy. Love you all!
Update
Hey! I got some blood work done today. I’m participating in a study at the NIH for people with Hairy Cell so I got many vials of blood drawn today. My numbers haven’t changed much from a month ago which was a bummer. I don’t know why I expected I’d be bouncing back quicker, wishful thinking I suppose. I’ll leave my numbers below, but to summarize, white blood cells and platelets are a little low but not super low, just below “normal/healthy range.” Red blood cells and hemoglobin are in a great place, very healthy. Neutrophils are in the healthy range too.
I have my follow up bone marrow biopsy and CT scan scheduled for July 26 and August 2 respectively. And then on August 9 I’ll meet with my doctor and I’m hoping he will tell me I’m in remission! The bone marrow biopsy is to search for any remaining hairy cells and the CT is to check on my spleen and lymph nodes— to see if they’ve shrunk down to normal sizes. I’ll update the blog as I get more results.
I’ve been feeling fine though! I got a cold a couple weeks ago and had to take some time off work, but I’m feeling better now. I’ve been having a lot of foot pain since treatment and I’m wondering if I have peripheral neuropathy. It just feels like my feet are tired all the time even when I first wake up or haven’t been on my feet a bunch. It gets worse when I am on my feet a lot but it’s pretty consistent now. So I’ll talk to my doctor about it.
Anyway, thanks for checking up on me again! Here are my numbers from this morning:
WBC 3.9, Neut 2.5, RBC 5.35, HGB 16.1, PLT 123
Last post for a bit
I saw the doctor today and my numbers are great!
WBC 6.8, Neut 5.3, RBC 4.57, HGB 14.8, PLT 119
So everything is normal with platelets still a little low but not lower than last week and still pretty close to normal. Which is great because all my numbers were low back in March when I was diagnosed.
Doctor thinks we’ll schedule my follow up biopsy and CT scan for August. So I’ll post again once I get results from those.
I will be drawing blood for the NIH in July as well. There’s a group of doctors studying Hairy Cell and I’ve volunteered to be part of the study. Though I didn’t get them my blood before treatment, they’re still interested in tracking my health. And fortunately they’re pretty good at answering questions when I’ve emailed them. So it’s good to have some experts on my cancer that I can reach out to. I also joined the hairy cell patient registry at Ohio State University. I’ll be an anonymous participant for them but they’ll keep track of my records and treatments and progress as well.
I’m looking forward to really feeling good again. I think I’m only a matter of weeks or days away from feeling like new. The meds I’ve been taking these last several weeks have done a number on me—my digestion has been a mess, I’ve been super anxious, and of course my energy has been zapped. I’ve gained some weight and feel like I have aged —more gray hairs and wrinkles on my face. So I’m looking forward to hitting the gym and feeling like my old self.
I also have been told that I’m more susceptible to other cancers so I need to be careful about second hand smoke and sun protection. And when I asked about other cancer prevention the doctor suggested I limit eating sushi and processed foods and to avoid burnt foods, particularly burnt meat.
All of this to say, this of course hasn’t been an easy few months, and it’s not completely over for me. But I can’t say this enough, it could have been way worse and I have so much to be grateful for. I’ve been so very loved during all of this. Thank you again for caring.
ALL DONE!
Got my last treatment today! No reactions, it was a very quick and smooth last day. Said goodbye to the IV room and I pray I’ll never have to sit in those chairs again! I’ll see the doctor next week and I assume we’ll set up a CT scan and biopsy for later in the year to make sure the treatments worked, so I’m looking forward to the day that I can let you all know I’m in remission. Until then I’m just going to assume the treatments did the trick. My blood still looks good. Red and white blood cells are where they should be and platelets are just a little low but I expect they’ll be back up again soon. I’ve read from other people who have been through my treatment regimen that their blood was up and down for a bit but eventually leveled out in the healthy ranges. Today’s numbers:
WBC 4.8, Neut 3.5, RBC 4.34, HGB 14.2, PLT 112
Thanks again for checking on me! I’ll post again in a week after talking to my doctor. Love you!
Immunotherapy 7
Just finished up my treatment. It was easy today. I’m feeling good! Numbers haven’t really changed much from last week. I have my last treatment next week! I saw the doctor today and he said I’ll get another CT scan in August to check on my spleen (it was quite enlarged…not sure I had mentioned that when I wrote about my diagnosis). He said he’d probably have me get another bone marrow biopsy later this year too to just confirm the cancer cells are gone. I look forward to that news, but for now I’ll just assume the treatment worked. My blood work seems to be showing that that’s the case. Here are my numbers:
WBC 4.3, Neut 2.9, RBC 4.09, HGB 13.7, PLT 141
Can’t thank you all enough for caring about me and my family. Checking on me, supporting us, praying for us. I’m so lucky to have you in my life. Thank you!
Immuno dose 6 of 8
Made it through my 6th immunotherapy treatment today with no problems. I even slept a little in the IV chair. I was pretty tired after making the drive down from Madison Wisconsin yesterday. We had a great week up there with family and friends! Our hearts are full.
My numbers are really good today. I’m so close to being in the “normal range” for all my blood counts. Whites and neutrophils have already made their way into the normal range which is awesome because they’re my immune system. Reds and hemoglobin are a little low still, so I’m still a little anemic (tired). Those cells carry oxygen around the body. And my platelets are so stinking close to normal range. These cells help our blood to clot and help us heal when we bruise. Here are the numbers:
WBC 5.1, Neut 3.8, RBC 3.91, HGB 13.4, PLT 139
Thanks for checking up on me! I’ve got a couple more days to take it easy then I’ll play some more gigs this weekend!
Immuno dose 5
My immunotherapy treatment today was relatively uneventful. I got pretty hot and clammy so they gave me more steroids and slowed the IV a bit but I got through it just fine. My numbers are still good. Whites went down but are still in a pretty good place, just below the “healthy” range. Everything else is still slowly moving up. I’m still a bit worn out from performing this weekend but very grateful that I was able to do a couple gigs. Here are today’s numbers:
WBC 4.2, Neut 2.9, RBC 3.92, HGB 13.5, PLT 102
Platelets are in the triple digits!!
Played a gig!
Played a set this afternoon downtown! With my numbers being better than they were before I was diagnosed, I decided to head downtown and play some music today. It was so much fun to perform again. Now I do have a bunch of meds running through my system still, so my voice was a little dry and didn’t hold up as well I as I would have liked. And I’m aching a bit, but it was good for my spirit. I’ll be taking it one day at a time. Today was a good day though!
Good report
Well I got a good report this morning! My white blood cells and neutrophils have shot up. I was actually rather uncomfortable this week. I’m guessing it was just my bones working hard to get me these white blood cells, so I’d say the discomfort was worth it!
WBC 9.5, Neut 8.4, RBC 3.76, HGB 13.2, PLT 98
Immunotherapy dose 4
No reactions to my treatment today. I’ll get the filgrastim shots all this week again. I don’t love how they make me feel but it’s bearable and hopefully they’re helping. My numbers didn’t change much from last week. I’ll get blood work done Friday morning too. I’m still planning on working this weekend a bit! I probably won’t be as active and lively of a performer as I normally am but it’ll be good for my spirit to get back on stage. I’ll take it easy and won’t go into the crowds. It’s been over a month since I performed which is the longest break I’ve had from the stage in a while! Thanks for checking on me! Here are my numbers today:
WBC 1.7, Neut 1.1, RBC 3.63, HGB 12.6, PLT 86
Blood is looking good
Went in and got that booster shot for my white blood cells again this morning. I’ll get one tomorrow too. It looks like that last dose of chemo didn’t really hurt my blood numbers fortunately. I’m expecting they’ll just keep going up from here. Today’s numbers are:
WBC 1.8, Neut 1.2, RBC 3.4, HGB 12, PLT 95
It’s nice to see my platelets still going up. Just need to get the whites and neutrophils up then I’ll be rocking and rolling! Thanks for checking on me!
Last dose of chemo
My numbers all went up over the weekend!
WBC 1.7, Neut 1.1, RBC 3.45, HGB 12.1, PLT 84
So my doctor is giving me my last dose of chemo today followed by my 3rd dose of immunotherapy. So it’ll be a long day in the IV chair.
I’ll update after treatment this evening.
POST TREATMENT:
All done with chemo!! Woo hoo! No reactions to either treatment today. It’s looking like smooth sailing ahead. I have 5 more immunotherapy treatments left but they should just be 90 minute IVs every Monday (except Memorial Day—I’ll do it Tues that week). My doctor expects that this will be the last weekend I’ll need to lay low. So I’m hoping to be on stage May 17th and then I have my sister’s wedding the following weekend. I’ll keep you posted! Thanks for checking on me!
Blood seems to be improving
Did blood work today and platelets are still going up. White blood cells are up a bit and my neutrophils are the highest they’ve been since I first went to get tested back in March (same with my platelets). Red blood cells and hemoglobin are down a bit but my blood work is probably going to be all over the place for a bit while my body gets back to normal. Here are today’s numbers:
WBC 1.3k, Neut 0.8k, RBC 2.99m, HGB 10.7g, PLT 60k
Minimum “normal” numbers for those by the way are WBC 4.6, Neut 2.0, RBC 4.69, HGB 14.1, PLT 142. So everything is still low but better.
I’m definitely feeling anemic and my immune system is still very compromised but I’m happy to see progress. I got my white blood cell boosting shot today and will get it again tomorrow. Then Monday I should be getting some more treatment.
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!