The first time around, I found that I knew every date – the date of my diagnosis (June 12), first chemo (July 7), last chemo (Oct 30), first surgery (Nov 19), second surgery (Dec 17), third surgery (Mar 17) … this time, I have not been paying attention to dates. They don’t matter to me. I cannot remember my surgery date – I think it was in August but might have been September. I would have to look it up on my calendar.
Last Wednesday I had my port surgery. Friday I had my first muga – looking at the blood flow through the ventricles in your heart. In this case, the test was a baseline before chemotherapy. That will help determine if the chemotherapy is causing any damage.
It was interesting, they called on Thursday to book the muga. They said “you doctor wants the test before Oct 24, and they only slot we have before then is 10:30 tomorrow”. Hmmm. OK. I knew that they only did the muga test on Thursdays. They knew I needed it on Monday, so I’m not sure why it took them so look to book it. But anyways, what was interesting was the mention of an Oct 24 date.
Then I get a call from the VON (Victoria Order of Nurses – these are the homecare nurses that come to do wound checks and give injections). They let me know that they were scheduled to come on Oct 27 to given me an injection. The injection they are giving me is given at least 48-hours post chemo and is a white blood cell booster. It is similar to the neulasta that I did with AC chemo. That too was interesting. Given those two bits of information, I derived that I’d be having chemo on Wednesday.
Friday I finally got the call. I have chemo booked for Wednesday. It will start at 9am and will be a long day. It involves a loading dose of herceptin, plus taxotere and cytoxan. I can expect to be there at least six hours. My first comment was that I’d need to bring lunch. She said that they would feed me – well that is new, I was only ever given snacks at Stanford. I highlighted that I had celiac, and she said she’d mention it so hopefully they would have something for me. I’ll also bring a sandwich just in case.
The first half hour will involve education and so I’m allowed to have a caregiver with me. After that, my caregiver is welcome to wait in another lounge or something – but in the infusion centre with me as they don’t have the space. I found that interesting, as hubby came to almost all of my previous chemos. It is odd to think of doing this without anyone as a caregiver there. On the other hand, I’m sure that hubby will be happy to just drop me off and get back to work helping to finish building Treehouse Village. There is still a lot of work left to complete the community, and a bunch of it is falling on him to do.
I have tried to remember that my job now is my health – before anything else. I’m trying to get out walking more – fortunately, now that we have moved, my puppy is back home making it necessary for me to walk her. I also had a lovely walk with a friend – again, nice to get out and walk on what was supposed to be a completely miserable day.
The lymphedema in my right hand continues to be a problem. When I wear one of my sleeves from before it actually makes it worse. It is weird this time, as the swelling is mostly in my hand and forearm. I ordered a custom sleeve that should arrive in the next week or so. In the US, they pulled “fitted” sleeves from the shelf – off the rack. Here, they specifically measured and set the compression specifically where I need it. Hopefully the new sleeve with be more comfortable but also work.
I did try out some of my VR boxing. It actually seems to help the arms – even when I’m not wearing a sleeve. Now the best thing for it would be swimming, but I’m not allowed to swim for another 10 days. So, VR boxing it is. I really enjoy doing it, so the biggest problem right now is not over doing it.
I do find that I feel a little guilty for spending so much of my time walking and playing with the VR boxing. I don’t feel like I’m doing productive work. That being said, I spent a lot of time pulling my kitchen together. It is a mostly functional kitchen – although I’m still missing a few things. I’m trying to create an awesome kitchen here without taking too much away from the kitchen at the house – as people are living there and using it. It seems that every other day, I’m headed over there to take away another kitchen gadget that I cannot live without.
I’ve been asked how I am feeling about chemo. This morning I was feeling rather lonely about it. I’m surrounded by people but they aren’t the gals from my support group who really get it. My neighbours want to help, but don’t really know how to. I’m pretty good at asking for what I need, but right now I don’t know what that is. I just wish I felt healthy. The lymph node dissection took more out of me than I expected. The port surgery is pretty minor, but it too is giving my body one more thing to heal.
I also want to find the time to do some sewing – which feels like a luxury when the house is still full of boxes. Things are a complete mess in my office, where my sewing machines are. But I want to make a head covering or two before I need one – and that won’t be long. Last time it was really predictable – a couple of days after the second dose. With this chemo is isn’t so clear – it could start a few days after or a couple of weeks after. Either way, it won’t be long before I no longer have hair.
I’m not afraid of losing my hair again – what I’m concerned about it whether or not it will grow back. Taxotere has been known to cause permanent hair loss. My oncologist dismissed that as a concern saying that it is very rare – but I know people who had to deal with it – so I know that it does happen. And since this is my second round of hair loss, it might be different.
There is also the issue with nails. My toe nails on my big toes were a problem with chemo last time. I don’t know what they will be like this time. They might even fall out. They stopped growing (just the big toe nails) a few years ago. I’ve always had such nice nails – especially my finger nails. I wonder what this regime is going to do with them.
And so, I’m doing some form of preparing. In some ways I’m nesting, but mostly I’m biding my time. With any luck we will get some nice weather for a few days so I can beach a couple of times before I start to feel like crap. I hate that treatment makes you feel bad – it is worse than the disease!