Yes, perhaps that is a good place to open this long past due blog entry. Synapse challenged is how I am feeling these days. That and a whole lot of other things too. And I will stick with that sensation for a moment. Basically there is a period of time after chemo-cleanse where my brain just goes foggy and as limp as an overcooked brown rice noodle at the slightest provocation.
I feel as if I have succumbed to this sensation and experience over and over for the past few weeks, and it is a bit crazy making. So the chemo-brain sensation is real.
This morning (well, afternoon at the moment) I am trying to push back a bit and write, at the moment I feel somewhat clear, and hope that translates.
The last five/six weeks have been like nothing I have ever imagined, and much of the time I have simply been in survival/function mode. This leaves me feeling pretty lost at times, as it is hard to connect with the world when my brain is so foggy. Thankfully Laura and Sarah are pretty good at connecting with me as are a few close friends.
My big full life, is now a small surviving life. I never know from moment to moment what I will feel like, which makes planning a beast. Some moments are delightful and open and my brain is plugged in and happy. I can move and talk and enjoy. Some times, I just move my head and get nauseous, or a smell will waft by and darn near double me over. Please note though, I am tolerating the new dosage of chemo-cleanse drugs “well,” and my nausea is not nearly as bad as it could be. So that is something to be grateful for.
We are better at anticipating the rhythm of chemo-cleanse now that I have had three infusions. This is what it looks like.
Day One – Wednesday
Drive to CTCA, port access, blood work, meet with people, busy day until we get to the infusion center late afternoon. Claire has been my nurse, thankfully. And the infusion itself is relatively uneventful. Well, except for the dancing feet from the steroids. The day is filled with an anticipatory dread that I can work around; I can’t say that I have fully gotten past though. We get back to the hotel after dinner and rest. Just writing about it makes me feel blah.
Day Two – Thursday
Back to CTCA for a morning saline drip. My body really appreciates the extra hydration. We have also learned that I don’t fare well with the new anti-nausea drugs, so am on the older, drowsy-making kinds. Day two is this odd, twilight zone kind of day. My body is aware that it has received a really heavy dose of drugs and wants them out, however the heavy post chemo feeling hasn’t arrived yet, so I feel generally ok. To take advantage of this, Laura and I have taken delightful field trips on the way home. We’ve been to Longwood Gardens and Winterthur and look forward to visiting both repeatedly. It let’s me get outside and walk a bit, with lots of benches, and we get to see beautiful things. With the holidays coming, they are sure to get prettier and prettier, and I really need something to look forward to on these trips. We are now members of Longwood and Winterthur will have us too, soon enough.
Day Three – Friday
Ugh… That is how I usually wake. I feel just gross. Nausea in the background, all the sensitivities, my tummy hurts, and there is a threatened headache if not an actual one. The new drugs that make me drowsy aren’t too bad, I can sleep on and off and rest a lot. Eating becomes an art, finding the right foods and getting fluids into me is a challenge that Laura has cheerfully, or determinedly, faced over and over. If I don’t eat, my blood sugar crashes, not good. If I eat the wrong foods, miserable tummy. If I don’t stay hydrated, body not happy. I usually get in the tub with a bunch of Epsom salts at some point, and we try to get a walk in to help cleanse and clear. I say this on day six, on days three to five I can be oh, just a bit cranky about all such things that are good for me.
Day Four – Saturday
Is a lot like Friday, only it is the weekend now, and there is this sense we are missing things that we would enjoy doing. Laura has arranged her schedule so that she is off from Wednesday through Sunday with me during this time. We get a lot of good time together and have found we can read to each other, take small walks and often do a bit of shopping together. The farmers’ market is usually possible, although this week we made a run up to Laura’s apartment for our grand excursion of the weekend.
Day Five – Sunday
By now I am off the anti-nausea drugs and a bit less groggy. Last night I was able to make much of our dinner and I worked on a felting project, ‘cept that the final touches require some sort of brain creativity and that isn’t showing up as yet. We stayed up too late reading last night, and I had some more very odd dreams. It seems that the high dose melatonin combined with the drugs creates a wild dreamscape. It would take the whole day to just record and process most of them, so I just allow dream time to be and don’t work to hard to interpret or understand.
And today is day six. That means the worst of the post-infusion stuff should be over now. The actual side effects of the chemo-cleanse are slower to arrive and cumulative. These days it is the belly ache, hair gone, tiredness that is most noticeable – and who knows what else will arrive over time.
I find that It is difficult to keep in touch with people, more so than I imagined it would be. Even though it seems like I have all this free time, my ability to put it to use in a way that feels productive is highly limited.
My house project is still chugging along trying to actually get started, and I had to tell the architect and contractors that they needed to initiate contact and keep in touch with me. The simple act of initiating action is often beyond me. So I am now telling all of you the same thing. It is really hard for me to make stuff happen, and for a highly productive person
this is downright strange and frustrating, so check in if it feels right; I may not initiate as much ’til chemo-cleanse and radiation are over next year.
And in closing, let me remind myself and everyone else, why I am doing this. I was diagnosed with stage two locally metastatic breast cancer. It had not spread out of the breast, however the spread is the concern, thus chemo-cleanse to treat my body systemically. I have to come back to why I chose this occasionally – we ran the statistics – they do improve markedly with this regimen. I am choosing to do this. I want to live for a good long time.
I will sign off with another reminder, to myself, that I hope someday, sooner rather than later, to begin to see the wisdoms, learnings, or the where I am going from this… For that I pray.
Much love to you all,