Significance of dates and getting ready for chemo

By | Thu June 26, 2014

It is funny how special dates have meaning – and how we know what dates are good dates and which are not. I wanted to strongly avoid starting chemo on July 1st, as I did not want every Canada Day to be a reminder.

Instead, the date aligns with a date that already has meaning for me. July 7 is my father’s birthday. On July 7, 2008 Scott and I left our house and hopped on our bikes to begin our 16-month trip around the world (http://goingeast.ca/blog/2008/07/07/we-left-home-finally/).

On July 7, 2014 I start chemo. I shall also start writing the going east book (I had done a little writing for NaNoWriMo the year before I started my PhD, but haven’t picked it up since). When I thought I might have cancer, the only real regret I had in life was that I had not yet written the Going East book. So, I shall use my chemo start date as the opportunity to start writing the book. I’ll bring my laptop with me to treatment, and see if I can use at least some of that time for writing.

We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care. Photo Jun 25, 2 35 31 PM

Tomorrow I have my port put in. They use what is called twilight sedation. It is the same type of sedation that they use for cataract surgery. It means I will be awake but not completely present or aware of everything. In theory it will heal within a couple of days. Hope that I can hop in the pool within a week, as I suspect that swimming may be one of my better post-chemo options (easier on the joints).

I’ve also asked a friend (or two or three) to be my exercise accountability buddies throughout the chemo process (I could use one or two more volunteers). In the PhD process some people use writing accountability buddies to help them stay motivated to get through writing their proposal or dissertation. It occurred to me while biking today that I could use an exercise accountability buddy – someone to hassle me to get off the couch on those days when I just don’t feel like it (that is an email or a Facebook note asking what exercise I’ve done each day). I don’t need to do a lot of exercise (I don’t want to overdo), but they recommend trying to keep to the same level of exercise throughout chemo (but with more rest time). Since I mostly bike 1.5-3 hours per day (4-5 times per week), that might be a bit too much to maintain all the time, but it would be nice it I could at least make sure I’m doing something every day that isn’t a chemo or procedure day.

I experienced anger for the first time today. When I was biking, I found myself angry that the treatment for breast cancer is to cut it off. How archaic is it that the treatment for disease is amputation. I’m expecting that either tomorrow with the installation of the port, or July 7th with the first chemo treatment, the whole ‘I have cancer’ thing will sink in and I’ll start to realize what this all means. Right now, I’m just taking things one procedure at a time. Trying to make sure we have everything organized and in place for the time ‘when I get sick’, cause I don’t feel sick now.

Chemo calendar:
July 7 – AC
July 21 – AC
Aug 4 – AC
Aug 18 – AC
Sep 1 through Nov 17 – weekly T

3 thoughts on “Significance of dates and getting ready for chemo

  1. Maha Bali

    I hear you on the anger at “amputation”. My husband is a vascular surgeon, so amputation is a big part of his job and you don’t wanna hear him and his friends talk casually about it. But it also gives me perspective. Whenever I “call him out” on the brutality, inhumanity, or amputation, how they can do it so casually and not be sensitive to how the patient feels, he reminds me that they are amputating the disease, in order not to harm more of the person’s body. This, of course, is something we all know rationally, but not emotionally. I’m not sure if you finally decided for lumpectomy, which seems to be more clearly focused on “removing the disease” than mastectomy, which is more like removing the “organ”. I am guessing doing chemo first shrinks the size of the tumor to improve chances of lumpectomy helping?

    Sorry about all the questions, I am sure the answers are either scattered here or will appear sometime soon, so you don’t need to respond directly to this comment.

    Reply
    1. Becky Post author

      Hi Maha,
      One of the benefits of chemo first is that it has the potential to shrink tumors. This means there is a better option for what they call “breast sparing surgery” as it allows the surgeon to get clearer margins – that is they can see the cancer better, so they know where to take it out. Right now my tumors don’t have clear margins, so the would have to take out a lot of extra tissue just to make sure the got it all. That being said, I will always need to think about re-occurance. Leaving in breast tissue may increase the risk of re-occurance (although I’m assured that statistically this is not the case). Right now, what I like is simply the option – that I’m not forced into a particular surgery – at least not yet!

      Reply
  2. scott

    Looking more into the basis for the ACS recommendations around precautions for caregivers, they seem to be based on a study and paper Exposure of family members to antineoplastic drugs via excreta of treated cancer patients, which showed that in all (two) of the patients studied who were taking Cyclophosphamide, drug residues were detected by both surface wipes and urine samples of family members. CDC has strong recommendations about avoiding occupational exposure to Antineoplastic agents such as Cyclophosphamide and other chemotherapy drugs, and this is a logical continuation of these recommendations.

    So, good to be careful, but not worth panicking about from what I can see.

    Reply

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