BC Becky

Never thought I'd want to be a breast cancer survivor

Tag: anger

  • They say …

    not to read too much on the Internet, and yet it is the internet that is helping ensure I am better prepared for chemo. There are a few things no one mentioned to me, that I’m now finding out:

    • You should go to the dentist and get your teeth cleaned prior to chemo. You should not have teeth cleaning during chemo as there is a risk of infection, but also chemo can cause mouth sores, which makes a dental cleaning that much more difficult. So, I found a dentist and had my teeth cleaned last week.
    • I’m now seeing that I might need a shingles vaccine. I think this is a live vaccine, so cannot be given during chemo. I might already be too late (t minus 1 week).

    I have no idea what else I’m missing … but the best bit of advice I’ve had so far is to take some time off before going into treatment. We are still planning to head up to Yosemite on Monday after my ultrasound – but we are opting for a hotel rather than a campsite. I need to know that I have access to showers, so my port incisions don’t get infected. Although it is not the same as camping, it will still be nice to spend some time hiking and meditating in nature.

  • TV Breast Cancer

    Now, I don’t watch a lot of TV, so my perceptions may be off a bit, but I’m still a little mad. When someone on a TV show gets breast cancer, they don’t portray it right at all. They don’t show you the decisions that need to be made. They seem to always show you someone going through chemo – which many women with breast cancer don’t do – and they don’t show you surgery – which pretty much all women with breast cancer do. By dramatizing the whole experience they do nothing to prepare you for the reality of it. This makes me rather mad!

    Specifically, I remember last year one of the lead characters on Parenthood had breast cancer. She lost her hair, she got sick, she ended up in the hospital at one point because she ignored an infection – but they never dealt with the surgical implications of breast cancer – the dealing with what it means to have a part of your body cut off – and what it means in our society to not have a breasts. So yes, I’m expressing anger again, so perhaps that is the phase I’m beginning to enter in ernest.

    I’m also annoyed at our society. The entire concept of reconstruction is so much more emphasized here in the US. I recall one of the women in my PhD class commenting that this was “silicone valley” as in the land of fake boobs (she was mixing up LA and San Fran) – but from a breast cancer perspective, it certainly is the land of fake boobs (although from what I understand many people choose techniques that use their own body fat rather than silicone implants). It is like people will think I am weird if I do not opt for reconstruction – and yet I see all these non-essential surgeries and the extra pains that women go through – and I question it. Why would I want to subject myself to that (yes, there is some irony here, in that I had PRK eye surgery, but there was a defined quality of life benefit for that – I just don’t see that defined quality of life benefit for reconstruction). Many of the women I know going through reconstruction did not have chemo – so they had one less toxic experience with breast cancer – but still.

    In some ways, I think dealing with an inside cancer is harder and in other ways it is easier. With a lymphoma, it is much more serious because you cannot simply “cut it out”, but then you also don’t have to deal the surgical implications of cutting off a body part. I also feel for those who have slow growing cancers, who cannot actually feel their tumors. If you don’t have the physical evidence of the cancer, the doubt creeps in – do I really have cancer? Worse is that until treatment, you don’t feel sick – so there is also the perception that it is the treatment that makes you sick. I’m not quite in that case, as I have a large mass in my left breast. There is no mistaking it. It is there. But I do feel it regularly, and I question, “it is getting smaller on its own”, “it is spontaneously curing itself”, “maybe I don’t have to do this chemo thing after all”. I can only imagine how much worse those doubts would be with an invisible cancer that you cannot feel.

    Right now, I’m feeling strong. With each passing day the wound associated with the port is healing. I’m hoping for a longer bike ride today – might even try riding one of my upright bikes. I should be able to swim by next week, depending on when the third biopsy occurs. By not have surgery first, I’m loosing some certainty in the cancer – as they cannot fully stage it until it is removed and full pathology is done. I’m finding that the imaging doesn’t provide enough detail – to go from one larger tumor to two smaller ones under MRI which was not seen on ultrasound (although they are double checking on Monday) and mammogram, demonstrates the lack of accuracy in imaging.

     

  • Significance of dates and getting ready for chemo

    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

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