12:07pm. Friday, October 31 2014.
How I’m feeling: Rough. Trying to control my nausea. I may press the red “I need help” button that is attached to my bed to ask for nausea control medicine – again. Having a tough time breathing. The swelling all throughout my upper body is still quite bad.
I have definitely felt a big dip especially over the past two days. My nausea is
[I actually just had to take a moment. I threw up my breakfast. Now getting Gravol dripped in to me via IV. I’m feeling better now. I think. I’m trying to not think of food. The thought of lunch may have triggered the nausea]
I’ve been shivering cold, light headed, dizzy, headachy and riding constant waves of nausea. Constant fatigue that does not recharge with sleep, food, water – anything else a healthy person does to refuel. They weren’t kidding when they said that this high dose chemotherapy is 5Xs stronger than the last chemo cocktail I’ve received. I’m trying to not think about some of those long term side effects. If you’ve been following along, you’d know that I took it really hard. Yesterday was bad. I have become sicker – and will become sicker (before I become better). It’s happening.
Whoa. Wait. I have to tell you about this stem cell transplant. It was crazy. It happened on Wednesday, October 29th (Reunion with Stem Cells. CHECK!)
The night before, I was a little anxious – but not so much. By this point, I’ve had a bunch of different meds put through my Hickman line – and every morning, a nurse collects vials of my blood from it while I sleep. I thought to myself “How different could this be?”
Ummm – it was different.
The nurse came in to my room with 2 people in full out lab gear – one holding a flat grey cement looking thing in her hand with misty cold air dancing off of it.
After verifying my information, the lab folks went just outside my room to give my stem cells a little bath.
They came back in and connected stem cell baggie #1 and….. OH.MY.GOSH.
As it was making it’s way in to me, it hurt. It hurt my insides in a way I can’t quite describe. It was so awkward. I felt like I was part of a science lab experiment or sci-fi plot. I have a high pain tolerance and can usually guess closely re: what an uncomfortable situation may feel like. But this one, was a surprise. It really caught me off guard. The moment the stem cells made it’s way in to my chest, I said “Oh my gosh….that’s uncomfortable!!” with what I’m sure was a really puzzled look on my face. I had this deep pain in my abdomen, it felt like stark cool air shooting through my veins and my mouth and back of throat really stung. I don’t know how else to describe it. It was so uncomfortable and I wanted the feeling to end asap.
The nurse had given me mints and ice to suck on – as some patients feel they help. And then I had to do it again with stem cell baggie #2. Nope. It wasn’t any easier.
I was forewarned that I may taste cream of corn and garlic – but I didn’t. And that everyone around me or my room will be able to smell it but me. Apparently my room still smells because it’s still making it’s way out of me. Don’t ask. I have no idea why it smells/tastes like cream of corn and garlic. Even the nurses couldn’t explain it.
That is over and done with. And how am I doing here? Well, Every couple of hours nurses come in to take my vitals: blood pressure, heart rate and temperature. Constant nurse and doctor rounds. No privacy at all. Medication is so tough to take. I literally have cups full to take as couple times a day. You’d think I’d be used to popping all of these treatment pills by now – but I’m not. Between the drugs being given to me via IV, the pills I have to take, the injection shots – and of course all of the side effects from them – I’m trying to learn to just surrender and accept this process. Fighting and resisting every step of the way will not help. In fact, it will likely work against what we’re trying to achieve here.
I now have to wear a mask to minimize risk of catching something from someone else. My blood cell count is dropping and will continue to drop. It not only will drop to low – but to 0 which causes concern about infections. All sorts of infections. Infections happen all the time to everyone. It’s just that our bodies just fight it off and we don’t even notice them. In my case, I will be left defenceless. And so, as you can imagine there are many precautions I have to try to remember to take 24/7. One example is rinsing my mouth with this solution that was provided to me every hour. I will soon not be able to brush my teeth – and will only be able to use a soft sponge and rinse. I can already feel the pain in my gums. The team encourages me to eat as much as I can now because apparently the sores can get so bad that patients won’t be able to talk, chew, eat and swallow comfortably. One of the reasons I’m getting all of this hydration pumped in to me. No starvation or dehydration allowed!
And so now, it’s wait for the inevitable to happen – the slew of crazy side effects from the heavy hitting high dose chemo – and for the team to keep me as comfortable as they can while I’m on my way down. It’s going to be shit – and the doctors and nurses know it. It isn’t something they even attempt to sugar coat because a blood cell count of 0 IS going to happen – and shouldn’t be taken lightly. But they are doing a good job at focusing on the light at the end of the tunnel once we’ve made it through!
My psychosocial therapist (Dr. A) popped by today. And boy, did I ever need her. Last night before bed, I had a rough episode. I found myself staring at my cup of meds, sobbing as I took down each pill. It’s been a week, and things are getting to me. I’m starting to really miss the outdoors (I don’t care how gross anf cold it is, I’d take it if I were allowed to. So, stop complaining), fresh air, my coats, boots, leaves, getting pretty, MY DOG. I just feel isolated and trapped. I’m the bubble girl. Literally, I have a mask on right now.
Dr. A. reminded me while it is going to be tough to see the light (since everything around me is so dark, painful and uncomfortable right now) that that is what I should try envisioning. And so, I’m envisioning me out and about this late Fall/Winter rocking a sweet outfit, feeling confident and like me again, spending quality time with the people I love and doing whatever the hell it takes to make me nothing short of happy.
Happy Halloween, all. I wish I had a costume. I have a ton at home, but it’s tough to guide someone through my tickle truck to find something and bring it on over to me, the bubble girl. Actually, I already feel like I’m in a costume. This is not Carolyn. I’m not in Carolyn’s body. I haven’t felt like I’ve been in my own body for a while now. But good ol’ Carolyn will be back – likely a better badass version 😉 Carolyn V 2.0.