Yesterday I had a rough pain day, with lower back muscle spams. Based on some slight googling, it might be caused by the weird angle at which your body and shoulders are put for the port-a-cath procedure. It probably wasn't helped by the fact that I've been listing towards the right side for days because the left side of my chest (and arm) hurt so much. Come to think of it, I have probably been walking slightly lopsided for a couple of weeks now. I was upset and frustrated, because I wanted to be in a good mood yesterday, I wanted to have some fun with my sister before she flew back home, I wanted to have a good weekend before starting chemo. I am so so so glad that my family has been able to come out and visit. They have been a lot of help keeping my toddler occupied, helping us around the house, and just generally providing a distraction from the cancer stuff. However, I haven't been following the rules and, because I keep wanting to enjoy the moment, haven't been taking as much time to nap, recover, and just get my mind ready for next week. I will do better next week, as I keep getting warned that I need "plenty of fluids, and lots of rest" all the time.
So, what do I want to tell you about? I've gotten a lot of questions about "what's next?" - so here's the plan (as I think I understand it) for next week:
First off, the chemo treatment I will be undergoing is called DA-EPOCH-R, based on the drugnames they will be giving me (DA-EPOCH (dose-adjusted etoposide/vincristine/doxorubicin/bolus cyclophosphamide/prednisone) and rituximab (DA-EPOCH-R))
Monday - After doing some quick blood work to make sure I'm healthy enough for treatment, Rituximab will be administered to my port (I think the doc said this might be about a 5 hour day). From what we've read the first day is longer, because they need to monitor and make sure the very-powerful drugs aren't hurting my veins, that my body is tolerating things well, etc.
Tuesday - a needle will attach a small pump - looks like a pager - to my port (again, they will be nice to my veins!). This port is attached to something that looks like a cool fanny pack, which will hold all the medicine, so that I can continue to receive chemo treatment while at home
Friday - go back to doc's office so that pump can be removed. I think they give me another medicine then, but I'm not 100% sure
Next Monday - a shot to boost my white blood cells (neulasta) will be given. I've had the priviledge of discussing this $7000 per shot medicine with my insurance, and have now been assured that they will cover it, and it will be administered at my doctor's office. There was a brief period of hours yesterday where it seemed like I would need to make arrangements for the shot myself (although at a discount through a mail order pharmacy of BCBS's choosing), and that my husband might need to give it to me, but that was resolved. Apparently this is very powerful, but has the unfortunate side effects of making bones hurt. a lot. However, it seems to be an almost miracle drug in helping keep patients healthy and continuing with treatment, so I am happy to take it.
Next two weeks - time for Joelle's body and mind to recover so we can start again :)
I feel much better today, so much so, that we were able to go out for a bit and I pretended to be as normal as I've ever been for a little bit. The tough part is that the prednisone that is helping me feel better, also has the fun side effect of making me anxious and keeping me up at night. I might need to talk to doctors about better times for taking the pills, we'll see.
I've been enjoying my evening on non-sleep by reading the third book from The Hunger Games series, so at least I've been entertained!
I've been reading a lot of cancer survivor blogs (not webMDd or google, I know better than that!), and one woman wrote something that really struck with me. She says she visualizes her cancer, and (I'm paraphrasing) says "Thank you for making me take a minute to stop, for reminding me of what really matters in life. I have learned my lesson, now leave." That has really resonated with me. I've always been very driven, accused of being a nerd at school, and a workaholic with my career. Even at first when I didn't feel well, I tried to balance what I thought was important at work, and at home, against my health concerns. The first couple of days, when we were thinking I was going to need emergency open-chest surgery, I was still worried about getting back to work and helping them sort things out since I was going to be gone for such a long time...
In just a couple of weeks, this cancer has given me a different outlook on life. If I could ask you to me one favor, just one little thing for me, it would be to make sure you schedule that annual check-up with your doctor, or have the dermatologist take a look at that mole you don't like, or just do the one medical thing you have been putting off because (honestly) you might be a little scared to find out it is a problem. Do it for the people that love you, because they really really really want you to be around for many years to come.
Hmm, deep thoughts at 3am. It's time to try to sleep again. Good night, happy Sunday everyone!