After that, I had a good run. Things seemed to be going well - tumors shrinking, infection going away - and I was looking forward to spending two days with my parents in the Berkshires. Just a few days before leaving, my body decided to start in with the joint pain side effect of this drug. Excruciating, arthritis-like pain in every single joint. Getting out of bed has been hardest. Once I move around a bit they ease some, but stairs are rough, and I don't have enough energy to constantly be up and moving, so there are always times when I'm back to being stiff and in pain. We did make it to the Berkshires, and we had fun, even if I had to be in a wheelchair or use a walker and a cane the whole time. I think my favorite part was the puppet show of "the three little pigs" that was so amazing that it entertained both the kids AND the adults completely for a full half hour! They seriously need to advertise more to adults as it was just as fun for us as it was for all the 2-8 year olds that were there to watch.
For a few days I was off of any pills and meds (with the exception of my nightly cannabis oil. Did I ever tell you what it tastes like? Dirty socks - yup, not so appetizing. But not so bad if you just swallow it and keep it off your tongue). It was a nice feeling. And, it turns out, I'll be this way for a while. I love that I don't have a thousand pills to take to manage the side effects from this drug. Makes it "easier" to handle for me mentally.
On the way home from the Berkshires, I broke out with a rash on my knees. The nurse practitioner (Jessica - super nice!) looked and agreed with me that she didn't think it was another case of cellulitis, but rather heat rash or some other rash from being exposed to something my skin didn't like. It started on just my knees, but did spread out and cover most of my legs and arms and cheeks over the next few days. They looked at it when I went in for chemo on Friday, and everyone talked and we all decided that it was most likely a reaction to sun exposure (or sunscreen/sun exposure), which I'm supposed to avoid while on this drug. I thought I had done a good job covering up with sunscreen and pants, but it wasn't enough. At least it didn't keep me from getting my chemo, though. I was a bit worried about that when I went into clinic on Friday.
This weekend has proven to be quite the smack down for us here in the Fitzgerald house. Friday, my chemo went well, and I was out of there in under 2 hours. The steroid made me a little nuts, as usual, but I was able to get a little rest and had a great chat with my Aunt Susan. Later that night, Mike had his own emergency. He was stung by some ground wasps while mowing the side lawn, and ended up having a major allergic reaction. He was taken by ambulance to the ER that night, and was sent home on prednizone, benadryl and with an epipen prescription. I went to my neighbor's house and we got to chat and catch up. It was like a little girls night in for us, while she was "babysitting" me and making sure I didn't have any reactions. We picked up mike at about 11:30, and we headed to bed. The next morning Mike got into doing some other things and forgot to take his meds. A panic of feeling the same symptoms start up again (even though no hives were breaking out this time) while we were at CVS picking up his prescriptions sent him back (by ambulance) to the ER. This time they just watched him as he had by then taken his steroid and benadryl, but they were glad he went in. He is now required to carry an epipen with him always as the reactions will be worse and worse each time he gets stung.
With all this going on, Saturday was Lochlan's 3rd birthday! I can't believe he's three. It seems like the time is just flying by, and that I'm missing out on some of the good stuff. He is turning into a little boy, no longer a baby or a toddler, and its making me miss Saoirse even more. We didn't get to see her grow up to be a little girl, and I think in my head I'm just not ready for him to surpass her in that way. Mike and I made a cake (a train cake to be specific) for Lochlan's birthday. He loved it, and after dinner with family, running out of a wind storm in the yard and all sorts of excitement, cake and presents, I was completely exhausted and had to go to bed. Of course, I spiked a fever and had to call in, but with all that happened over the weekend (and the fact that I was having no other symptoms of infection), my doctor was fine with me taking some tylenol and sleeping it off. I was fine the next morning (except for being tired and having joint pain still), and tried to get more rest.
It's hard to rest when all you want to do is be normal. I think this has been the hardest part for me. I want to be more useful and helpful, but I just can't. I think maybe that's why some people think we are doing so well over here. I'm looking better, and mentally am feeling better, but the reality is that physically my body just can't cope. I still have to rest a lot, and still have pain that is interrupting my being "normal" and "functional." It's hard to allow people to do everything for you all the time, and it gets harder to keep asking for help. I feel like I should be progressing faster, and even though I've been told that I'm making good progress and that things will take time, I just wish that I could be more like myself and less like a cancer patient. But I guess that - for now at least - I'm going to have to get used to being a cancer patient again. You would think that I would be used to it by now, but its a hard thing to let yourself be.
Again, thank you to all of you who have reached out to us with help and support. It means so much to us. If you have some time to come hang out with me, or come play with Lochlan, we always need the help. Thank you!