Guinea Pig

It's been quite sometime since I've been able to say this on the blog, but....I got good news!! In the afternoon on Valentine's Day I got a phone call from one of the research doctors at NIH. They said they have a start date for the first round of the CAR T-cell clinical trial.

February 27th is when things will get underway. Although it's very good news, and this could potentially change my life if all goes well (50/50 shot)...I feel very uneasy about the whole ordeal after learning all the details.

Tomorrow I go in to meet with the doctors again at NIH and to get blood work done...woo....I did this back in the fall of last year when I was looking for answers, so this is the easy part. Then starting next week I begin the cycle of scans. I have to get a PET scan (so used to these), an MRI of my brain (obnoxiously loud but doable), EKG (the thing where they put stickies on your chest and they get squiggles on a paper of my heart and stuff), Eco cardiogram (which is an ultrasound of my heart), and last but not least ANOTHER neck lymph node biopsy (these are NOT fun and I've already had 3). And I may very well be getting my THIRD Bone Marrow Biopsy (which is incredibly painful, they don't knock you out, and I remember everything from the last two...even got sick the last time...so fun). Most of these scans and tests will be taken place over a day or two...I will be leaving NIH feeling miserable every freakin time.

Then first thing on the 27th, I go in to start the project. They will be putting 2 catheters in (one in each arm), and hooking me up to a machine that takes blood out of one arm, cycles it through the machine to take out the T-cells, and returns my blood in the other arm. Not too bad, right? Well the following three days I go in for chemotherapy....again.

It's a low dose of chemo so I won't be losing my hair or have to take steroids...I'll just feel kinda nauseous. During this time however, they are genetically modifying the T-cells they extracted, so that they will specifically target my cancer and kill it. The moment they are put back into my body, they will replicate and start attacking. It'll be an army of T-cells!

That same week I go in to retrieve my T-cells with a simple infusion. It's all over right? NOPE! Due to the likelihood that I will be experiencing "reversible but intense" symptoms, I have to stay overnight as an inpatient in their hospital for 9 freakin days. It's not as bad as the 6 month stay of a bone marrow transplant at Johns Hopkins, but I already feel like a major lab rat at NIH...only I've been promoted to guinea pig instead. Let's face it, I'm going to go mad.

And yes I know what everyone is going to tell me...read books, bring your laptop, watch movies, talk on the phone, etc....all the things I'm already planning on doing. But I'm a social butterfly...I need to be around people (preferably people who are not my doctors or nurses). Don't take this post the wrong way...I'm SO INCREDIBLY happy that I got this phone call, and that I'm starting on this clinical trial ASAP so that if it doesn't work, I can try it again but with bigger doses. I'm so thankful that ONE of my prayers have been answered and this has the potential to save my life...even if I am the only statistic for Hodgkin's Lymphoma. I will fight this cancer to the bitter end and will do whatever it takes to cure myself. I'm very optimistic and going into this procedure with a positive outlook...but it still doesn't fix the fear that I have going through it all.

I'm going to feel very scared, alone, and worried everyday of this procedure. I expect I will be writing in here daily while I'm staying in the hospital. I may even do live videos (if I don't look too horrendous). I hope my friends and family will keep in touch during those days, as I will most likely be alone in the hospital through a good part of it. The one thought that is pushing me forward is "well...hopefully this time next month, I may have found an answer, and it will have been worth the pain"....I hope it's true. So....