take the damn pills
On Thursday (day -7) I checked in to the “BMT” unit at Indiana University Hospital for an Allogeneic Stem Cell Transplant. This is about a 30 day inpatient stay. In fact, this might blow your mind but the actual day of stem cell transplant is the easiest part for me. What really matters is what happens after.
That type of stem cell transplant simply means I’ll be getting stem cells from a donor not my own...because well, mine suck and they don’t want to attack my cancer cells. IU does about 50 of these specific transplants a year, that is a medium size amount for a hospital but, the actual unit is pretty small. The unit also has ICU capabilities for anything that goes wrong, they are not messing around.
This place is so small that as soon as I walked into my room, I cried. It broke me to see such a tiny room. I didn’t even have enough room to do yoga. How am I supposed to try motivate myself to keep my muscles from atrophying? How am I going to move around? How will I recover? “I don’ t want to go crazy in this matchbox of a room!”.
But, I had my moment, I got mad, I got sad, and then I asked myself “Karrah, are you going to be a little bitch and create excuses before they even hooked you up to an IV?”. Of course I got over the size of the room and folded my yoga mat in half. You can do squats and lunges just about anywhere along with a couple of other exercises I found on the “gram” and I actually talked the nurses into leaving a small exercise bike in my room.
Don’t be fooled though the past couple days I have been so tired that I don’t get out of bed until 12PM and it takes me like 2 hours to talk myself into getting up and around. But a small work out is better than no workout…am I right?
Let me tell you how my first inpatient day went. The entire week before the transplant the BMT team spends it sending you through induction chemo, meaning, they basically set off a nuclear bomb inside your body. I mean this is as barbaric as it sounds. It can affect many other organs with short/long term side effects, it’s just a wait and see game.
One of these side effects that is for certain is that I won’t be able to have kids. I will be infertile. In case you’re wondering...no I did not freeze any eggs, there wasn’t really a lot of time for that and I didn’t know what kind of damage was done to my ovaries the first time I went through treatment a couple years ago. Honestly, it makes me really sad, it’s like I’m grieving a part of me that never even existed, that wasn’t allowed to exist. Micah and I have dreamed about having kids and talked about it so many times. It hurts. But, I can cry about this later. I truly believe that there is a right time and place to deal with trauma/sadness and now is not that time for me personally. I need to live before I grieve motherhood!
But back to Thursday (day -7) I got a “Central Line Catheter” put into my chest right above my heart. That is similar to the Port I have currently but, it allows for multiple lines and access points for all the chemo, fluids, transfusions and medications at the same time. The operation was slick, just a few incisions and shots. No problems! Just a little sore.
this is my central line catheter
About 11 PM that night I received my first chemo dose of Thiotepa, one of two chemo drugs that is going to set a fire to all my bone marrow and stem cells. Now, I am very much my own patient advocate so, I always ask all the questions about my medications. I asked the Pharmacist about my drugs and my nurses. I learned that they would always prescribe anti-nausea medications and to take them as needed. Well, I must have misunderstood. I skipped the pre meds for the chemo. Big mistake. They were for anti-nausea along with a few steroids. I told my nurse that I don’t normally get super nauseous but I would let her know when I do and I would take them when I need them. Got my chemo, fell asleep all was well.
At 2:30 AM I woke up violently throwing up, in fact I couldn’t stop, at all. Every 10-15 mins all my fluids came hurling out my mouth. I couldn’t even get the pills down at that point. It didn’t stop until 8:00 AM Friday morning.
Then my Doctor came in……. and I definitely had to face him and explain that I thought the pre meds were optional. Well, they weren’t. Be your own advocate, but don’t be a martyr and take the damn pills. That’s what I learned some things are prescribed for a reason.
But, I am pleased to say the next 2 does of Thiotepa went off without a hitch (because I took the meds). I am just fatigued and tired. I have a break from chemo today (-5) and Sunday (-4). Then they will start the Cytoxan on Monday for 2 days. Cytoxan soundsa little to close to “TOXIC” for me. Also, it’s kind of scary to see the nurses double gloving to touch my chemo bag and then wearing a giant blue robe to hook it up to my lines….I mean that stuff is going into my body. It’s no big deal… but no one else can touch it!
First round of Thiotepa before I knew it was going to keep me up all night.
It’s amazing how much less fatigued I am with just one break from Chemo today. My Doctors explained that the major side effects don’t kick until about a week later-just a few days after my transplant. Side effects are just so different for everyone that they can’t really give me an answer about what I am going to go through…just a lot of maybe’s..that range from tolerable to terrible.
I don’t have a choice but to just take it as it comes and love myself through it, no amount of worrying is going to change that. You don’t know how strong you are until all your choices are eliminated. This just doesn’t apply to cancer. It happens when you have to look your fears in the face and you don’t have an option turn back, so press in and see what strength comes out of you. It’s been there all along.
