February Update featuring Blinatumomab

This month has been a little harder for me, which is why it's taken me so long to come out with a new post. I've honestly just been too tired to do it. So here is what's been going on lately!

After getting out of the hospital from my December-January stay, I had a bone marrow biopsy (which is where they take out a bit of your bone marrow from the hip) and the hospital sent it off to be analyzed and read. My parents and I went to clinic in Voorhees and got the results and next steps from my doctor. The amount of Leukemia in my bone marrow was .5% which doesn't seem bad but to be in full remission that number has to be 0. Based on those results among other things, a team of doctors decided that I should go on a drug called Blinatumomab. This drug is a type of immunotherapy, not chemotherapy. My parents and I were actually really happy about this because I have been on this drug three other times back when I first relapsed in 2015. It is a 24-hour month long infusion so I have a bag of medicine with me all the time. Pretty annoying. Anyway, I felt great when I was on it a few years ago so we weren't worried. Apparently, we shouldn't have been so naïve.

I was admitted to the hospital to start the Blin on February 5. Everyone who goes on the drug has to spend 3-4 days in the hospital just to make sure that everything is going smoothly. Well, for me it did not. The same night I was admitted and started the drug I got a really high fever. It was bad. All night my heart was beating at around 140. They had to put an IV in to give me IV fluids since my port was being used for the nonstop Blin. It was one of those nights where I couldn't stop moaning and breathing heavy. Every time I fell asleep, I'd wake up desperately hoping it was morning and it had only been two minutes. It was roughhhhh.

The following days I don't remember too well. I just know I was miserable and still trying to get rid of my fever. I couldn't eat and it was hard to drink. My blood counts were dropping so by Sunday I insisted on a blood transfusion. I had to get a different IV for that because the one I got on Tuesday was pretty much used up. On Saturday I had a feeding tube put in because I simply could not eat and had no appetite. It had been four days of not eating so as much as I hate, and I mean HATE, getting the tube placed, it needed to happen. For those who are not familiar with what a feeding tube is, it's a thin yellow tube that goes up my nose and down into the top of my stomach where liquid feeds give me nutrition, usually overnight. I'm sure you can imagine why placement is so uncomfortable and something I hate! Once it's in, it's a huge relief and really a life safer for when I have no appetite.

The only picture I took with my feeding tube in. It was in for a little over a week before Mom took it out and my appetite was back.

Anyway, we wound up getting to leave on Monday so we were only there for a week but it felt like an eternity. That whole experience really shook me up and reminded me that I am sick. Since my first month was so easy (too easy) I don't think I really felt the impact of having cancer again until that first week on Blin.

Since then, I have home care nurses who come every four days to switch out the medicine bag and check in. My biggest complaint with Blin is that I have been very tired since being on it. I wasn't expecting that since I did so well the last time I was on it, so thats been disappointing. I mean tired to the point that I went to Ulta and Walmart with my mom the other day and then wound up taking three naps throughout the rest of the day. Me, my mom, and Mal went back to Walmart again a few days later because I just wanted to get out of the house so Mal pushed me around in a wheelchair.

The real reason Mal and I went to Walmart😏 They had two huge bins of $3.74-$5 movies and we probably looked through it for half an hour. I'm telling you it's worth it! Those bins are the reason why I have a decent sized movie collection! Cheap movies are my weakness 🙈

Thankfully I only have about a week left since I come off it on March 5. This past week I had another bone marrow biopsy and it came back MRD negative which means the Blin is working and I am in full remission!

Going off the Blin does not mean that things will be slowing down at all. We found out recently that I will be going into the hospital to start my bone marrow transplant on March 17 and I will be infused with the cells on March 26, as long as everything goes according to plan. I will be in the hospital anywhere between 4-6 weeks (the average). This is good news, as we really just want to get this all over with. However I have a ton of appointments until then so it's kind of overwhelming.

This past Monday we had a meeting with my transplant doctor and it was one of those two hour meetings where they have to tell you every little part of the treatment, including all of the things that can possibly happen to you as a result of the treatments. It was not a fun meeting. Somehow, even after hearing all of the things that can go wrong, I still feel optimistic. Not so much that it's going to be easy or that I'll get out without any battle scars, but I just really think this will be the treatment that will end my Leukemia for good. I hope I'm right.

Tomorrow my parents and I are meeting with radiation oncology to discuss the radiation I will be getting for the transplant. I've never done radiation before and I'm not thrilled about it. On Friday we are meeting the staff who will be working with me and also discussing care for when I get out of the hospital. It sounds to me like I pretty much will be living in a bubble for three months. I'll probably write again about some of the precautions we'll have to take. There are a lot.

As always, thank you for the nonstop prayers and thoughts! This month has been harder for me and it's going to get even harder before it gets easier. The love is felt and appreciated!