*This post was written on Saturday, August 6, 2016.
It’s been just over 3 weeks since I ‘moved’ up to Boston for treatment and so much has happened. In my last post, ‘Self Titled’, I touched on the diagnosis of my recurrence and a little about the chemotherapy and clinical trial I would be participating in.
Today, again at 5am since it’s so incredibly hard to sleep in hospitals, I am technically in day 16 of treatment. The countdown starts the first day you begin chemotherapy. For this regimen, you get chemotherapy days 1-5, pretty much just hang out for days 5-10ish, then (blood) counts start to fall for days 10-14ish, plateau for a bit and recovery is (hopefully) from day 21-30+, Each person is different in the time frame it takes for their counts to recover. So who the hell knows. In my first induction chemo in 2014, I was recovered and released at day 26. This regimen, MEC, is known for the counts to take longer to recover. It could easily take 35-40 days to bounce back but I’m going to think positive!! In one of my first posts, ‘It’s been a hell of a week’ I go into detail about what blood counts mean for me and what it means to be neutropenic and on a neutropenic diet for the duration of treatment. I don’t want to bore everyone who remembers, so please refer to that link for a quick lesson! It’s in the first couple paragraphs so it shouldn’t be too painful 😉
Treatment itself went fairly smooth and chemo itself didn’t give me too many bad side effects. They have a plethora of palliative medicine to help with all symptoms, so say the symptom and they have something for it. I’m not trying to jinx myself so I’ve knocked on every real or fake piece of wood in this room, but so far so good! Dana Farber/ Brigham and Women’s Hospital (BWH) do not use ports for treatment, at least in my case, so this time around I only have a peripherally inserted central catheter (aka PICC line). Again, if you refer back to previous posts, I go into details about ports and PICCs as I’ve had both or you can click here for more information on the differences of a port vs. PICC line. The PICC line is in my left arm and I thought it’d be a huge pain in the ass but it hasn’t been so bad. They use the PICC as they are very easy to remove should I get an infection. I thought I was having an infection in the PICC last week since it was so incredibly painful but it turns out I’m just sensitive to half of the products they use for it. Go figure. Now that it’s been worked out, it really isn’t bad. Better than being stuck with a needle or IV everyday, that’s for sure.
This past Sunday and Monday was super difficult. Just like clockwork at the 10 day mark, I woke up so incredibly sick. Fevers started to spike, I was throwing up, having full body aches and pains, the freaking works. It’s basically feels like the flu x10. I came to Boston for treatment this time because, in addition to the clinical trial, BWH has floors specific to leukemia patients so my team are all specialists. They acted fast. I was put on two different antibiotics immediately which I still get twice a day intravenously (IV). Chemo depletes much more than just blood counts so I get a combination of potassium and magnesium daily and sometimes they have to throw calcium in there, which are all administered through the PICC line. The combinations of these meds had me feeling better in a couple of days. Wahoo!! Ugh, I wish I could have the flaky white fish right now. LOL.
Two of the main side effects of this chemo that are impossible or difficult to avoid are hair loss (wahhh) and oral mucositis. Again, please refer to the link to the post ‘It’s been a hell of a week’ to see my history with oral mucositis AKA blood blisters all up in your mouth! Gross and painful. No, thanks.
So far, I’ve been able to avoid (knock, knock, knock on wood) the blood blisters or mouth sores. Instead I have this invisible mouth pain from swollen gums that I can only compare to a really bad day at the dental hygienist. But the pain being worse and lasting for dayssss. It’s been a ‘fun’ process trying to find the right pain medication for me. I legit had a talking to the other day that there’s no need to be a hero and I’m taking minimal pain medications in their realm and I need to kick it up a notch to stay ahead of the pain. We started with Oxycodone but sans Tylenol since they don’t want to mask a fever. I’d give it a B- since it worked OK but gave me serious upset stomach. Then I was bumped up to morphine which I’ll give an A- for pain control and a big mother fucking F (sorry, you should know I curse like a sailor by now) for the splitting headaches and NIGHT TERRORS. I’m not even exaggerating. I’ve never been so afraid to fall asleep as when I was getting morphine because I was having the most realistic, vivid nightmares of my life. The kind that once you wake up, you’re sure as hell not going back to sleep. Not to mention a good amount of the people reading this have died in said night terrors so there’s that. We’ve finally landed on dilaudid, I’ve been told it’s the cousin to morphine. It took a couple days to get the right dosage/frequency but it does decent pain control without the negative side effects so it gets an A. This is a pain pill addicts dream but not so much for me. I like to feel alert while trying to be proactive for pain control so I’m still walking the line a little bit.
The dreaded hair loss started this week as well. Since it’s my second time its not as traumatizing but blows regardless. Last time around I waited wayyyy too long to shave it. I was literally half bald with the saddest little ponytail but still couldn’t part ways. We made it fun when we did shave it, but I cried for days after. I swore to myself I wouldn’t torture myself again. So, once I had a full day of running my hair through my fingers and pulling out clumps, I knew it was time. I made the nurse Geoff pull out the buzz clippers on Wednesday and just did it. It was liberating this time because I was in control. Of course I was having one of the best hair days but such is life. I got a few good before selfies so I guess that’s what matters haha. I face-timed a couple of my girls who happened to be at a bar so I did what I’m doing to them every time they’re at a bar and call me, Pickle Back shots (Jameson whiskey chased with pickle juice.. it’s glorious). They are my favorite shot but I think I’m a lone soldier on that one. Hell, if I’m going to be stuck in here I’m going to live vicariously through them whether they like it or not. Pity definitely is in my favor in this case. They can’t say no. LOL So, I’m a bald bitch again but feel more like a badass bitch 🙂 No, I’m not using bitch in the derogatory sense but more in a I am woman hear me roar way. Hope I don’t offend anyone but then again, I don’t really care at this point. This is my blog after all! 😛 Dad took one for the team and shaved his head as well. He’s always down to support me however he can. Mom did the shaving and I’m pretty impressed with her talent! Maybe she missed her mark in being a barber.
I expect to be here for another 2 weeks then will be discharged. What happens after, is still up in the air. There was word that I may be able to go home for a couple weeks before the transplant but we won’t know anything until I finish this phase.
Keep prayers and positive thoughts coming! My immune system is still nonexistent so anything can happen. I’m playing it safe but it never hurts to have some extra support.