When a doctor says to you ‘so for the 8th time, about dying’… It’s going to stop you in your tracks.
But let me back up a few days… I was discharged from the hospital 4 days ago after 32 days inpatient, and it was a feeling of pure bliss. I reflected on my last two blog posts and am annoyed with how upset and down I was. Although, I think it’s to be expected after being in the hospital for that long, in pain and with minimal visitors. I need to cut myself a bit of a break. I was discharged around noon and thankfully we were able to secure a 1 bedroom, corporate apartment through the nonprofit Hospitality Homes. It’s so perfect for what I need and is centrally located in Boston.. aka sick views of the Prudential building and Fenway from the rooftop. It’s awesome. I will hopefully be able to explore soon. My friend Darin came to visit and we hung around the apartment, took walks to the park and cooked yummy meals. I was still neutropenic so had to avoid public places and raw foods. Boo!! It was perfect timing for a visitor. Oh! And I had a sweet surprise from Meredith and Daniel on Saturday. Loved the feeling of some normalcy.
It’s weird how much energy you feel like you have in the hospital and then after being discharged, holy exhaustion. Even after doing physical therapy throughout the month stay, I lost a ton of stamina and strength. Didn’t lose as much weight as I expected which is good. Oh, fun fact, after 3 weeks of being on pain medication (granted an extraordinary amount) I’m already having to wean myself off of them. I was getting low grade fevers, runny nose, chills, etc. less than 12 hours after getting out of the hospital so I was freaking out thinking I was already sick. After a short Google search I realized I was legit having withdrawals. I’m working myself off the goods and feeling even better. Definitely opened my eyes though to the country’s struggle with opioid addiction… it’s the real deal.
So back to where I started… Today was my long day of appointments with my transplant doctor, leukemia doctor, transplant nurse coordinator, social workers, etc. at Dana Farber. I know I’ve said it before but they are a well oiled machine. I’m sure I have a heightened appreciation given I work in healthcare but it is pretty incredible. I had labs drawn first thing, probably about 12 tubes of blood (which is a lot), and then headed up to meet with the transplant doctor. I had met him once before in December 2014, during my first bout with leukemia, as a transplant was discussed back then but obviously ended up going with a different path. I have done extensive research on transplants but the information online is so general and I learned a lottttttt this morning. Most of it was traumatizing but it is what it is I suppose.
So I don’t lose most of you, I’ll try to be brief(ish) and save the specific information for future posts as I continue to learn. My transplant will be mid-September and I’ll most likely be able to go home before for a couple of weeks to decompress. I sure as hell need it. I’ll be admitted into the hospital about a week before the actual transplant where I’ll have two hickman lines placed. Similar to my pic line but they’re out of the neck (yay!). I’m going to have to complete another round of chemo, 4 days worth, have a day off and then I’ll receive the transplant. I learned the donor is a 9 out of 10 match and he’s a 28 year old from Europe. Pretty freaking amazing. (*Also a reminder why it’s so important to be on the registry. You could save someone’s life. What more do you need to know? You can get your kit, donate money or get more information about transplants here.) I won’t be able to learn anything more about the donor until at least a year post transplant.
This will be an allogenic bone marrow transplant vs. stem cell transplant and the only difference is how they get the cells from the donor (bone marrow biopsy vs. peripheral blood AKA intravenously). I will receive the cells via IV transfusion. They believe the bone marrow transplant will be better since it statistically has lower risk of graft vs. host disease (GVHD)… which is the biggest risk of a transplant and the main reason my doctor mentioned dying 8 times in the visit, literally. He can’t sugar coat it; it is a risky procedure and they can only predict the outcome based on the statistics and data they have but they don’t know for sure as each and every person, and donor, is different. Alternatively, I’ve read that mild GVHD is a good sign that the transplant is taking and killing all of the old cells so let’s hope that’s the worst I’m going to have to deal with. My body will only have his stem cells and will be creating my whole new immune system and my body could very well reject it… similar (sort of) to an organ transplant. I’ll even have to redo all of the immunizations I had as an infant. So crazy! They truly treat you like a brand new (grown adult) infant. LOL Please anti-vaccination advocates, send me only scholarly articles .. or not. Poor joke…
News to me, graft vs. host (GVHD) can happen within the first 100 days and up to two years after. Going through my consents today and seeing all of the side effects for each chemo, medication, etc. broken down by the likely (over 20%), unlikely (less that 20%) and rare (less than 1%)… It is terrifying. Absolutely terrifying. After being told that death is a possible outcome, I thought well, what is my alternative? I don’t do the transplant and die anyways? WTF. People are bitching about turning 30 and I’m having to discuss the possibility if I will even make it to 30. It is so fucked up. I cannot wrap my head around my current reality. But, who could? It’s not normal. It’s so difficult. I can’t even explain the feeling. And how do people (the doctors, nurses, etc.) make this their lifelong work? Of course there times that the person is cured and you save a life but to have this discussion with people on a regular basis is beyond me. Thankfully, someone is able to do it. I couldn’t stop looking at his tie that had black labs and hearts on it thinking I should know you in a different context than this. Literally any other scenario.
The day I receive the transplant is considered day 1. From day 1 to 30 I will be hospitalized much like I was this past month. From day 30-100, I will be closely monitored for GVHD in an outpatient setting with weekly follow ups so I will be living nearby in Boston. TBD where exactly that will be. Up until day 100, I’ll be on a Bone Marrow Transplant diet very similar to the neutropenic diet I’ve mentioned before and then after day 100 they’ll reintroduce certain foods slowly. There’s so much concern for infection that some foods are off the table for up to a year… for example no raw fish and blue cheese (wahhh). I was told that day 100 is an arbitrary day and I shouldn’t hold on too tightly to these milestones as so much can happen even after they are met. I need to stay in Boston for at least 6 months and then will return for monthly visits up until the 1 year mark and then annually after that. They anticipate I’ll be okay to live alone after 6 months but we will have to wait and see. I’ll be able to have my dog Bumper but no sleeping in the bed 🙁 I will be unable to work for at least a year. I knew the transplant is a big deal and will be the hardest thing imaginable but holy shit it is worse than I thought. I know people do it, have great success, continue to live their lives and never have to deal with leukemia (or other blood disorders) ever again. But, and it’s a big but, what if I go through all of this and it doesn’t work? What if I’m that poor statistic. In my heart, I don’t think I will be but I also never thought I’d have to do this. It’s becoming really hard to stay positive… However, I WILL be positive and WILL kick this shit but the reality of it all is overwhelming.
My plan is to continue to journal, speak with social workers, my friends and family honestly about what I’m feeling, continue to blog and do everything that I’ve been doing. I will need a ton of support financially but most important, emotionally. All I can think about is how much happens in a year and how much I’ll be missing. But, again, what is my alternative option? I don’t have one. One day I’ll be home with Bumper spending my time focusing on A Second Go and helping people through their ‘new normal’ as I sure as hell will be an expert after all of this. Until the transplant, I’ll have to enjoy the time I have outside of the hospital and breathe in all the fresh air and get all the doggy cuddles I can possibly handle.
Keep the prayers coming, keep sharing the gofundme page and please come to the Happy Hour fundraiser in my honor at Twisted Trunk in Palm Beach Gardens on September 21 from 6-9pm. Click here for the Facebook event page.
I’ve got this.