My last post about Brian’s first round of SGN-35 chemo was pretty long, so I thought I’d just put my thoughts in a separate post. Most people ask “so how are you guys doing?” And really, I don’t know what to say to that. My general response is “we’re okay today, we’ll see how tomorrow is.” I mean, really, I don’t know what people expect to hear from that. No, this isn’t really our idea of a “good time,” but at the time, things could be much worse! People also want to know how I’M doing (which, I don’t think is NEARLY as important as how Brian is doing…). So here are some of my thoughts on the chemo process, and how “im doing.”….
This chemo treatment was my first experience with chemo. Brian has been through it several times before, as well as two Stem Cell transplants…so yeah….he’s gone through A LOT. So i feel silly talking about this as any sort of “big monumental” thing since Brian is a pro at this…but I guess it was a new thing for me, and I can’t change that fact.
I somewhat knew what to expect with the process in general…I knew where we would be at and I knew what the treatment rooms looked like and I’ve seen Brian have his port hooked up to IV’s before (when he had his Donor Lymphocyte Infusions last April). The thing I was/am primarily anxious about was his reaction to the drug. We’ve researched this drug A LOT (I honestly think we know more about it than the doctors/pharmacists)..so I knew what the general side effects are. However, you just dont EXACTLY know how things will go since every person is different…and we have the second transplant factor to throw in there also (there are not many things published about that, since they are just now allowing treatments to be done for allo transplant patients). So, theres always the unknowns to worry about.
The one MAIN thing I was worried about during the actual administering of the drug was the RARE side effect of anaphylactic shock. Obviously..yeah..terrifying. But thankfully, that wasn’t an issue at all. I think the stress of all of that wore off by the end of Monday and I’ve been pretty tired and slightly sick to my stomach since then. I think all of the nerves are just making their way out.
The biggest adjustment for me is caring for Brian now, post-treatments. It’s hard to think that he is feeling sick and tired and worn out, and yet he is still going to work. I feel guilty, like I don’t work enough for him to stay home. I’m paranoid that I don’t keep the house clean enough, in case his immune system gets weak (that is a fairly common side effect). My mind is constantly running circles about how I can help him and make his life easier, since he doesn’t feel good. I got up this morning before he woke up and took the dogs out and fed them, and made his lunch for him, just to make his morning a little easier. Generally, I work from home on Wednesdays and I’m still in bed when he leaves. But I feel so guilty that I should be doing more for him..I’m perfectly capable and healthy..he shouldn’t have to worry about any of this stuff (ESPECIALLY when he’s still going to work!).
I also feel really helpless. I don’t know how to make him feel better. Obviously I’ve bought him Sprite, and gotten him TUMS and different things like that…but really, that only helps so much. I wish i could just take this away from him. And the crazy thing is that these side effects are MINOR compared to what many people go through with more toxic chemotherapies. Crazy.
Anyways..so that’s how I’m feeling. I’m tired and my stomach has been in knots on-and-off since Monday. And I’m really ready for the weekend. Oh, and i could really really really use a Starbucks right now.
Mainly, I really just don’t know how to make things better for Brian, or how to make things easier for him….and i really, really wish I could.
So anyways, that’s how I’m doing.