BC Becky

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

Tag: control

  • #thisiswhatdepressionlookslike

    This post has been inspired by a mix of things, not the least of which is how I am feeling at the moment. With the recent passing of Robin Williams, my Facebook and Twitter feeds have been filled with tributes but also warnings about depression. One of the Unitarian Ministers on my Facebook feed (yes I have several Unitarian Minister friends) posted a challenge to share pictures for people who suffer (or have suffered) from depression, as it helps to show the faces of depression. So, I took this picture today while I was out on my bike ride. One of the reasons I ride is to fight depression, but the fight is becoming more difficult.

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    I feel the need to write more about depression. The latest news regarding Robin William’s death just crossed my social media stream – that he had early onset Parkinson’s makes it seem that much closer to home.

    Yesterday represented a transition (last night really) – from control to loss of control. I took the above picture in the middle of my ride. I cried for most of the first 30km. It wasn’t until that point that I finally found myself back in control. I wasn’t sure the ride was going to work this time!

    Fortunately, when I felt the early signs, I began to reach out, and will have my first appointment with the oncology-psychiatrist tomorrow. It seems that at about the same time I reached out (about two weeks ago), Stanford opened a new oncology-psychiatry clinic. I will be one of the first patients!

    This is not my first bout with depression. I suffered from depression for about two years (2003-2005). Within the span of a year I (1) was laid off from my career at Nortel, (2) got married, (3) bought a house, (4) started a consulting career, (5) started grad school. By spring 2003 things were looking pretty good in my life, and yet I had difficulty getting out of bed in the morning. I was sleeping in excess of 10 hours a day, and I had no motivation. I wasn’t sad, I wasn’t anemic, I just wasn’t motivated to do anything. For me, depression appeared as a lack of motivation rather than sadness.

    On my bike ride today, I reflected on what I had learned about my earlier depression. First of all, I know which drugs worked! But more, I know that what threw me off balance was uncertainty in my life. Losing my job was not a bad thing, but not knowing what I’d do next was a challenge. Relaunching a career wasn’t a bad thing either, but there was just too many of life’s big changes happening to me in too short a period of time. My brain couldn’t keep up.

    This time it is definitely about uncertainty, although my mom also pointed out the issue with ‘chemo-pause’ as a contributing factor. One of the side effects of the chemo drugs is a temporary an onset of menopause (young warriors call it ‘chemo-pause’). In addition to the whole uncertainty associated with having cancer, I’m also dealing with emotions that may be enhanced by ‘chemo-pause’.  I’m thankful that there are now people at Stanford that understand the combination of factors involved.

    For those reading this who are also in treatment Stanford, if you are having any concerns (even mild concerns) with anxiety or depression, I urge you to ask for a referral to the new clinic. They have been fighting for three years to get it established. I’m grateful that it came to be just in time for me. Referrals do take time, and medications also take time to be effective, so don’t wait until it is really bad before asking for help.

    There is no certainty with cancer. Treatment is physically tough and the long road after treatment is emotionally and mentally tough. Be assured that I am well enough to know to ask for help when I need it.

  • Every day a new side effect

    Chemo has many side effects, so many, that they don’t tell you about them. What happens is, when you have a symptom, you contact your oncologist (or the oncologist on call) to see whether or not it is something you should worry about. There are so many side effects, many of which are rare or not that common, that listing them all to every patient would be impossible. But, from the patient perspective, I find myself constantly running into these odd side effects. I’m happy to be part of several support networks (both face-to-face and virtual). The virtual networks in particular are useful for finding out whether something is “call the doctor immediately” or “pretty common, mention next time your are talking to your oncologist”. For the most part, my oncologist has not been concerned about the side effects I’ve experienced. It seems to be though, that ever day something new pops up.

    Yesterday’s new side effect was loss of voice. Not a total loss, but I notice that suddenly my voice is horse and it is more difficult to speak. This of course posses and interesting challenge, as I also have blisters on my hands from toxic erythema of chemo, which I also experienced last cycle. When the blisters are at their worst, typing can be painful, so I use voice-to-text on my computer. The horse voice makes that a little more challenging. I actually don’t know for certain yet if this is a chemo side effect or if there is something else going on, but my social networks tell me it is not uncommon. I just haven’t yet had that confirmation from my oncologist.

    I’m also loosing my hair. Now, this is something that was expected, and it was why I shaved my head in advance of cycle 2. However, when people say  that hair loss usually occurs on days 3-4 of cycle 2, I expected it to be a single day event. That isn’t really what is happening. My hair is getting thinner on various parts of my body. From the front, you don’t really notice the hair loss on my head (which made me think it wasn’t happening), but from the back it is pretty clear. It is also interesting to compare mine to Scott’s, since we had them shaved at the same time. His is growing, mine clearly is not. It is actually the towels where I notice it most. I’ve taken to using two towels after a shower, one for my head and one for my body – otherwise, I end up with the little hairs from my head all over my body!

    2014-07-28 19.35.32Once the hand sores finish up, I prepare myself for the mouth sores. I’m now at a stage where food is tasting funny and my mouth feels fuzzy, like a layer of skin is shedding in my mouth. Last cycle I had a sore on my tongue which was rather annoying and painful. Food was finally tasting good, but it hurt to eat (ugh). I’m hoping that by using the magic mouthwash in advance I manage to avoid the worse of the mouth sores this cycle.

    Today was also my last swim until after my chemo nadir (blood count low). I have three days (8-10) where I cannot swim as my risk of infection is too high. I’ll miss swimming, especially if my hand sores aren’t healed  as biking isn’t an option when I have blisters on my hands. This actually also coincides with fatigue, so last time on day 10 all I did was sleep all day.

    All that being said, so far cycle two has not been as bad as cycle 1. I think because I have a better idea of what to expect, I can be more proactive about managing what is happening. I can also plan my weeks out better. I now know not to commit to things on specific days, but on other days I can be more flexible. That helps. The control freak in me is feeling more in control of what is happening.

  • Who would have thought … I look sexy in a buzz cut!

    Today was the trip to the really nice lady who volunteers to shave heads for those who are going through chemotherapy. We decided we needed a before picture – as Scott was also going to get his head shaved (in part in solidarity, but more because he needed a haircut).
    Photo Jul 17, 11 30 37 AMAs she shaved my head, I was pleasantly surprised by the result. I actually look pretty good with a buzz cut. 
     Photo Jul 17, 11 54 07 AM Photo Jul 17, 11 54 19 AM

    Afterwards, Mom and I went shopping. I started out wearing the head scarf but soon found myself feeling just fine without it. I was especially amused with the feel of the wind on my head with the windows open in the car (usually it drives me nuts to have the windows open as my hair flies everywhere). Then I discovered my shadow, which is very odd looking and still catches me by surprise.

    2014-07-17 15.12.14

    There are so many new sensations – it is amazing. Even a task as simple at putting on a t-shirt feels completely different. I’m looking forward to tomorrow mornings swim and shower!

    Now I just need to get a few nice pairs of dangly earrings (I welcome donations/gifts). I don’t normally wear earrings, but long dangly earrings suddenly help me dress up nice. I was never really big on fashion, and now I find myself buying a bunch of nice clothes so I have something fancy to wear to various appointments and meetings.

    Definitely feeling good today 🙂

  • In for an emotional day (maybe)

    I’m happy to report that the worst of the bone pains has passed. Once the nurse called me back, she looked into it, and advised that I could take an NSAID (like ibuprofen) for the pain. I have stronger NSAID for my arthritis, so I took one of them and within 30 minutes the pain had almost completely subsided.

    Yesterday was also my most tired day. I took a nap at 11am and woke up at 2pm. I clearly needed to spend the day mostly sleeping (although I did do yoga and go for a walk – albeit a short walk). Both the yoga and walk made me feel better – so as much as it is difficult to motivate at times, I know that getting out and exercising does make me feel better.

    Today I get to go swimming again. The nurse explained that the bone pain is caused by the overproduction of white blood cells being pushed out from the bone marrow into the blood. Since there are a lot all of a sudden, this causes pain – but it also is a sign of the rebound. So with the pain stopping (I’m sitting writing this with no medication in me – so it isn’t the medication dulling the pain, rather then pain being finished), my blood counts should be back up which means swimming is back on the agenda (yay).

    So, if chemo is day 1 (we are recalibrating to a 1 offset rather than 0 as that is what most of the health folks do) then day 11 is my rebound day. I think I will create a graph which will allow me to better forecast symptoms and see if cycle 2 is similar. If I understand this correctly (crossing fingers), I’m not in recovery mode until the next treatment, which has been pushed to Wednesday because my oncologist is on vacation. Currently, the schedule has round three moving back to Monday, but I cannot imagine going back in to chemo at day 12, so we will definitely need to put that out. I may be strong, but I don’t need to unnecessarily push myself for the convenience of someone else’s schedule.

    I mention in the title that today may be an emotional one. Today I get my head shaved. If you haven’t done chemo you may not understand this idea of proactively shaving your head. There are a couple of reasons for it. The practical reason is that hair falling out in clumps is a pain. The second, more important one, is an exercise in control. If I’m going to lose my hair then I am going to control when it happens. Control is a huge issue with cancer, as it is one of the things you lose. You lose a lot of control over how your body is growing, how it reacts, and the various schedules of appointments and such. So, when you have an opportunity to take control and do something on your own terms, it can be important for some people to take control. I admit it, I’m a control freak. I like to plan things and I am already struggling with my inability to plan the exact dates of our Hawaii trip because I have no clue how I will be feeling.

    And so, I am taking control of my hair, and having it shaved today. Scott will get his head shaved too. We’ll take a fun selfie when it is done! I’m looking forward to seeing what it feels like to have my head rubbed, the same way I like to rub Scott’s head right after a hair cut!

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