Day -21: Start the Clock

"Time flies. Time waits for no man. Time heals all wounds. All any of us wants is more time. Time to stand up. Time to grow up. Time to let go. Time ..."

-from Grey's Anatomy

So it's been nearly a month since I've updated. We spent the majority of the beginning of the month waiting for my insurance to approve my transplant. For awhile, it looked like I was going to have to get a whole new biopsy just to get approved and we scheduled an emergency BMBX for Friday, May 17. 

Then that morning I finally got the call from my transplant nurse coordinator that the insurance had approved my transplant and I got a verifying call from the insurance as well. This was a huge load off my back because since we had to schedule the biopsy emergently, there were no appointments for the procedure that included sedation. My first biopsy was without sedation and I did NOT have a good experience, so I was really dreading it. But we got to cancel that biopsy.

I still need one before the transplant, but we were able to schedule that for next Tuesday, June 4, with sedation. I'll still be sore afterwards, but at least it won't be as painful for me during the procedure itself.

On Thursday, May 16, my brother came home with a surprise for me -- a brand new Nintendo Switch to keep me occupied when I'm alone at the hospital, along with three games, plus another one he bought that will be automatically downloaded onto my system on June 28 when it comes out. He also got me pink and green controllers. The system comes with red and blue, but this way I have two sets for when their batteries die.

That weekend we went to Motor City Comic Con, which was our last big thing as a family that we planned for (besides seeing Dark Phoenix on June 8). While we were there, I met Henry Winkler (The Fonz from Happy Days), Mark-Paul Gosselaar (Zack Morris from Saved by the Bell), and David Tennant (the 10th Doctor from Doctor Who and Barty Crouch Jr. from Harry Potter and the Goblet of Fire, among other things). We had a great, but exhausting time. The following Monday we went to the Henry Ford Museum, which we have a membership to, and visited the new Star Trek exhibit there.

Those two days followed each other and afterwards, I felt like I needed a whole other weekend just to recover from the weekend! But I didn't have time to because on Tuesday, I had to get my teeth deep cleaned as part of my clearance for the transplant. I was very lucky and grateful that my parents paid extra so I could get it sedated so that it was one less test I had to worry about the pain for. Now, I'm obsessed with brushing my teeth, but I think that will be one good way I'll avoid mucositis and mouth sores while I undergo chemo and the transplant.

Amidst all this we got a little troubling news. One of our Goldens, Skye, who technically is my parents' dog, and who I affectionately refer to as my little sister was recovering from having what we thought were two sebaceous cysts removed. It was quite the surgery and she has two big patches of fur shaved (though they've started to grow back now) and some big incisions. We found out a week later, though, that one of them was a cancerous mast cell tumor. Our vet said it was extremely low grade, but even though she got it all, the biopsy showed that some of the cells on the edge were starting to migrate, so to be safe, she sent us to the Animal Cancer and Imaging Center in a neighboring suburb.

At her first appointment, we met Dr. O, who started the clinic and is a nationally renowned canine oncologist and she has studied cancer and canine cancer in particular all over the world. She did a fine needle aspiration of one other bump that Skye had and determined it was another cyst, and she also obtained the biopsy sample from our vet and sent it to Michigan State University (one of the best veterinary programs in the world) for further testing and to make sure it didn't have any mutations.  

The good news is that because it was a subcutaneous mast cell tumor, that automatically makes it less serious. Most mast cell tumors start on the skin and this one was below the skin. You'd think that would make it more dangerous, but from what Dr. O said and all the research I did, it's actually less threatening. Unfortunately, the tumor did come back positive for a genetic mutation and to say I was pissed at the world for it was an under statement. First, cancer comes for me with a genetic mutation, then it comes for my dog? Not okay.

Otherwise, though, everything else in regards to the tumor came back either extremely low grade or negative for anything that would be considered threatening. So now my dog has to take a TKI pill (tyrosine kinase inhibitor -- a chemo pill that targets the genetic mutation), just like I did. 

The good news is she only has to be on it for six months to a year to start, the side effects are very rare, and she only has to take it Monday, Wednesday, and Friday. So at the moment, she doesn't actually HAVE cancer, but this medication is preventing it from coming back, because the immediate threat would be that it would return to the exact same area and further infiltrate the tissue and possibly organs. 

The other really good news is that the foundation there is covering the cost of her medication, which is really great because with the transplant, three dogs, and just basic life expenses, we are spread super thin and it was going to be a struggle. Now, I don't have to worry about how we are going to afford it, I just get to be grateful that my pup is getting treatment and I don't have to worry that something is going to happen to her while I'm hospitalized for the transplant. And I get to go with her to her first follow-up next week.

Now that that is settled and my insurance is approved, we've been able to reach out to my donor. His final clearances should come through today. We ran dates by him and my timeline looks like this, so far:

Hospital admission: June 14, 2019

Stem cell donation: June 20, 2019

Transplant infusion: June 21, 2019

I'm not sure where my donor is, but wherever that is, he'll be donating the day before and it's cool to think that, like I've seen on shows like Grey's Anatomy, on June 20, somewhere there will be a cooler with bone marrow in it for me, making it to me by plane and/or automobile. Stem cells can live for 72 hours outside the body in a cooler, so it doesn't need to be frozen, which is good because if it has to be frozen, they mix in a preservative that can make you more nauseous and that can burn when it goes in. I'm unbelievably grateful to my donor and I hope at some point I get the chance to contact him and thank him.

I'm going to admitted a full week prior to my transplant. I know I'm getting Fludarabine and Busulfan as my conditioning chemo, I'm just not sure what the schedule will look like and if I'll be getting both each day or how many break days I'll have. I'm also probably getting ATG Rabbit. ATG Rabbit is an infusion of rabbit-derived antibodies that will help prevent rejection. I'm unclear on how many days I'm getting that as well. I also know they could start me on cyclosporine or methotrexate during this time, but again, I don't know what the protocol is there. I do know I won't be having total body irradiation and I am super grateful for that. However, my next few appointments should answer all my questions. 

On Tuesday, June 4, I have morning labs, a chest x-ray, and my bone marrow biopsy (BMBX). On Wednesday, June 5, I have a 9 a.m. appointment with the social worker to turn in my durable power of attorney healthcare directive, then an 11:30 a.m. appointment with my nurse coordinator to get my official schedule and go over alllllllll the ins and outs of everything and what to expect, and then I finish the day with a final appointment with my transplant doctor at 1 p.m.

Thursday, June 6 is Skye's follow-up appointment at the ACIC. It's the last appointment I'll get to go with her to because after the transplant, my immune system will not be strong enough to be in a vet's office -- I could actually catch animal bugs like bordatella (kennel cough). 

On Wednesday, June 12, I'm getting my head shaved! This, believe it or not, feels like it will be the most challenging appointment. I have had short hair less than five times in my life and almost every time, I've immediately hated it, and now I won't go any shorter than just below the shoulders. More often than not, my hair is so long it's unruly and it's something I'm kind of known for -- my long blonde hair (although right now, it's two years of grow out from a dark red that had blonde highlights and now new blondish-greyish growth). It's kind of part of my identity. But I know in reality that because I have to shower so often when I'm going through the chemo and while it's still in my system, and still every single day even after the chemo is long done, I'm not going to want to deal with hair that's to the middle of my back every day. I'll be too tired and brushing it out every day is too tiring as it is. I won't have the energy for it in this process. I know that I will be grateful to be bald. But I promise I'm gonna cry when they're shaving it off, because it'll be a long, long time before it's that long again. 

Then on Thursday, June 13, I'll be getting a mani-pedi as a gift from my parents. It might be a little hard for me to maintain my nails while I'm in the hospital and at a certain point, my nails are going to stop growing, then start growing brand new nails in. At least while I'm in a state of flux, they'll be pretty and my feet will be smooth.

On admission day, Friday, June 14, I arrive at the hospital bright and early at 7 a.m. for labs. Then at 7:30 a.m., my doctor's nurse practitioner will meet with me and officially admit me to the hospital, then we'll head to interventional radiology to get my tri-fusion catheter put in. Different hospitals do different things. I know my friend who was at a hospital in Toronto got a Hickman catheter which has two leads. Mine will have three leads. Then I'll get taken to my room to move in and, as I understand it, start chemo that day.

Someone in one of the Facebook support groups I'm in said something that kind of freaked me out, but also made me think really hard: Going through a BMT is basically dying to try to live. Another friend talked to me about wanting to leave certain things behind in her first life and choose what she takes on to her second life. I'm still kind of deciding what that picture looks like for me. 

I know I want to be reminded every day of what I'm doing this for. Obviously, I'm doing this so I can live. It's not really a choice, but a necessity. But I get to choose how I do it. And if I'm doing it to live, I need to remember and identify what LIVING -- really, truly living to the tips of my fingertips and toes -- means to me. For so long, I've just been surviving, with little blips of really living in between and I know how good it can be to just ... be. To be immersed in life around you and feel you have a purpose and be filled to the brim with joy. I want to take joy with me into my next life. 

So I'm putting together a jar (or maybe a baggie, because I don't know where I'm getting a jar from and my shopping list is long enough) and I'm going to write up a bunch of reasons why I'm doing this and what I'm going to do with my second life. I'm going to cut them up into slips and put them in the jar (or baggie) and when I'm feeling low and I need motivation, I'll draw a slip from the jar.

In the next few days, I still have some shopping to do. A poster of the New York City Skyline for my room, tons of lip balm and hand lotion and anti-bacterial hand gel (literally liters of it), journals, books, flossers, soft bristle toothbrushes, purple twinkle lights, and the list goes on and on ... I keep waking up in the middle of the night and remembering something and putting it in my Amazon cart.

Six years ago, when I had cancer but didn't know it, I decided to take a trip to New York City. I threw it together in three weeks. I had never been to the city before, but there was this awesome book convention and I decided that something in my life absolutely had to change and I was positive that whatever the next phase of my life was going to be, I was going to find the inspiration for it in New York. I was very lost at the time, but I was sure it would change my life. And it absolutely did.

I found peace in New York City. And since then, it's been my north star. I've been back and stayed for long periods of time, but I've never been able to stay, because just two months after my first perfect trip, I got diagnosed with cancer. And I really believe I was meant to take that trip to New York, because it's been the thing I reach for, even when I feel like my arms won't go any further. Somehow, I find a way to reach for New York. When I need it most, I find my way there. And I have absolutely no doubts that my future is there.

It's been a bit of a depressing week for me in that this is the time I'm usually there. That's when that expo and convention takes place. I know exactly what I'd be doing right now and exactly where I would be. Hell, I know what I'd be having for breakfast tomorrow morning. But in this BMT lies the potential of endless NYC and being able to call it my home for more than a few weeks.

When I did take that first trip, I remember getting this feeling on the train like "Wow. I cannot believe I managed to throw this together and it WORKED. I'm going and my life is going to change."

I have a similar feeling now as I realize I've managed to get this together, somehow, even when it felt impossible. And two weeks from right now, I'll be in my hospital room. My nurse coordinator told me time would fly by faster than I realized. She was absolutely right. 

So the most important thing I'm going to do in the next week is spend time with my family and friends. But I'll keep updating here.

It's my goal to update every day in the hospital and once I get back home. I realize that there are going to be days I don't feel like moving at all, but I'm getting a notebook to try and jot notes down so that I can give as comprehensive a view as possible. I want there to be a resource for people who are getting ready to go through a BMT and who have questions. I want others who are having a BMT to not feel alone. And I want to update my friends and family who have questions and Facebook status updates just aren't designed for these kinds of things.

xo,
Heather