I could punch someone the next time I’m told this but then again I won’t because it’s all people I love and/or respect saying this to me. It seems every time I post an inspirational something or other that I’m living by, the next day I get sicker than ever. Living each day by every breath has been a struggle these last 10 days but I’ve been doing it. Read last blog post if you don’t know what I’m talking about.
Oral Mucositis is the dreaded side effect your told about from the beginning of the transplant but you typically get some form of it with every type of chemotherapy. I’ve gotten it in the past. The times in the past I’ve gotten it I would say the pain/discomfort rates anywhere from a 2 to a 7, 7 being when I had the blood blisters all in my mouth March 2015 and ended up in ICU because of pneumonia. This time I would rate it at 15 out of 10. When I say I couldn’t talk, spit or swallow, I literally mean not at all. I couldn’t swallow a single sip of water or even my own spit (for those of you who know me personally, know I am OBSESSED with water and could easily drink my body weight in ounces x2 when I’m feeling good). I couldn’t speak so I couldn’t tell the doctors/nurses or my mom and brother why I was in so much pain. I ended up having to use a pen and paper to communicate. I couldn’t spit, or swallow, so I had a mucous sucker, like at the dentist, by my bed that I had to use so I wouldn’t choke, and I sure as hell couldn’t eat anything. All of this lasted a solid 6 days and I still can barely eat can 10 days later. It was beyond traumatic and by far the most difficult 10 days I’ve endured thus far… which says a lot.
The mucositis made my tongue so swollen it filled my mouth and was covered ulcers which looks like blisters. I took one picture on snap chat and that was enough. No one needs to see or remember what that was like. Sleeping wasn’t possible because of the pain and constant mucous always filling my mouth. If they think waterboarding is a form of torture, they should give mucositis to someone. No fucking joke. The worst part is, it doesn’t stop in your mouth. It can go all way down your GI tract and into your stomach. While my tongue is mostly healed, my throat and esophagus are still on fire but there’s no way to determine that without an endoscopy which I’d like to avoid.
I get so angry at when people tell me that I’ll turn a corner and time will eventually heal is that’s just all it takes, time. And there’s nothing I can do to speed up time. This side effect par for the course and it is expected, although I was told I had a bad case of it, so the most I get is an exam (which entail oohs and aahs) and a discussion of different medications to try to minimize my discomfort. When you’re in excruciating pain where it hurts to even cry, the last thing you want to be told is you just have to wait out the storm. I want a quick fix and I want it now. Funny enough, I have improved a lot and frustratingly enough, they’ve been right so far with regards to timing of my healing. My white blood counts started to recover and so did my tongue. The downside is I still can’t get control of the vomiting and as a result my throat is not healing as quickly. Literally every day since September 30, I have thrown up at least once. Every single day. There is no common denominator that we can figure out to make it stop. Just more discussions and changing of meds. We’ve tried every anti-nausea med under the sun and some work sometimes and sometimes they don’t. I’m still on the nutrition through my IV so I’m getting 1500 calories of nutrition daily. Even though I want to eat so badly, I really don’t have to which is nice to not have to stress about. I was able to get about 3 spoonfuls of cheerios with lactose free milk and a quarter piece of toast yesterday and today. Killin’ it!
As much as I’m trying to be present and get through one day at a time, I’m also ready to fast forward and get the hell outta here! Mom and I secured a 2 bedroom furnished apartment less than 10 minutes from the hospital. We really lucked out because this landlord is seasonal and leaving for Tennessee November 1 for 6 months. Exactly what we need! It’s a quaint old barn built in 1885 that was renovated in the 80’s into 3 apartments and it’s in a suburban area so we’ll be able to get some walks in away from the crowds. For the first 70 or so days out of the hospital, I’ll be on very strict restrictions: neutropenic diet, masks when in crowds, limited visitors, etc. But we do have a parking spot so my dad is driving my car up this week! We’re excited because we’re going to take advantage of having a car and make day trips around New England. I won’t be able to eat out of restaurants so our plan is to pack lunches and find nice parks or nature trails within an hour or two of Boston to have picnics. Suggestions are so welcomed!! Help us have an awesome day trip bucket list and some good mother daughter bonding time. I want to make time this in our lives not only have a negative connotation but rather a time where we chose to strengthen our bond and enjoy a little northeast living. Word on the street is it’s going to be a wicked winter so we shall see how much we love it.
I’m expected to be discharged within the week then I’ll be followed closely at Dana Farber for the next 5 months. Graft vs. Host Disease is my biggest risk and can occur at any point during this time so recovery is really just beginning. I’ll be happy just to be out of this hospital! Continued prayers requested as always. You have all been amazing and I can’t thank you enough.
All my love,
PS – Sorry no pictures… it hasn’t exactly been a photogenic few days.