BC Becky

Never Thought I'd Want to be a Breast Cancer Survivor

Tag: side effects

  • Bone-pain – a mixed blessing

    When I didn’t experience a lot of fatigue or any bone-pain yesterday, I felt it was a mixed blessing. I wondered if the reason I wasn’t feeling it was because I had successfully managed the side effects (although that doesn’t describe the lack of fatigue) or was it that the Neulasta shot that came via express scripts (mailed) wasn’t stored properly such that it was ineffective?

    This morning, when I started to feel the initial twinges of bone pain, I felt a bit of relief but also a bit of concern. The Neulasta is definitely working. This is a good thing. But everything seems to be running a day late (probably because of the later in the day infusion time). This means that my day early third infusion may feel like two days early infusion, and that would really suck. So, I’m crossing my fingers that the delayed onset was really just me managing the side effects better.

    In looking at my medications records, it appears I did not take my NSAID before bed last night. I highly recommend the Dosecast app (available on both Android and iOS) for tracking when you actually take medication. I can never remember what pill I took when, so every time I take something I just click the “take” button in Dosecast. I can then look up when I took what, and I can print out a 30-day summary for my doctors. So when my primary care doc asked how often I was taking the heartburn medication, I could just show that particular medication to him on my phone. Very handy.

    I’ve now taken my NSAID but cannot sit until it takes effect. I’m typing this from my husbands standing desk (handy that he has it!). I’m about to go out for a training walk with my iPod – which now has Warrior by Scandal loaded on it in addition to my regular mix of Bon Jovi and Bryan Adams. My walk may turn more into a moving dance than a walk!

    In other notes, I’m going bald and my eyebrows are thinning. People say “you still have your eyebrows” as it seems mostly that I am the only that notices the difference. They look manicured now, and I haven’t waxed them in years! Last night when I pulled on my sleeping t-shirt I felt all prickly on the neck. I discovered that the act of pulling the shirt over my head dislodged a bunch of the remaining head stubble and embedded in the shirt collar. I had to put a buff on my head (head scarf) before putting on a clean shirt, so that I didn’t end up with hair in my shirt collar again! What is interesting is that I do seem to have a layer of baby fuzz on my head. So the hair that is falling out is being replaced with baby fuzz hair. It looks like I have more bald patches than hair patches now but the fuzz means it doesn’t feel that way.

    Apply sunscreen to my head results in a hand full of little hairs!

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    I am reminded with each new experience to that I am approaching this chemo thing (and cancer thing) with a sense of curiosity, and that is what is keeping me sane. Now I’m off for a walk/dance 🙂

     

     

  • 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.

  • 2nd Round of Chemo

    Today was my second round of chemo. It was actually much less traumatic than I expected it to be. It really helped that someone in the BC Connections Facebook group commented that her second round went a lot better than the first – so rather than hearing horror stories about the second round, I am hopeful that things will run a little smoother now that I understand some of the side effects that I can expect. The pains may still come, but they won’t be new, and there are things that I can do in advance of the pain to hopefully prevent it.

    Since chemo is a pretty ridiculous idea, I went for a ridiculous outfit! And of course we also needed the team selfie with our matching haircuts 🙂

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    Photo Jul 23, 2 05 05 PM

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    This cycle will be 13 days rather than 14, as my oncologist wants to move me back onto the ‘normal’ schedule of Monday’s. There was no way I would be ready for chemo on day 12, so day 13 will need to do. I was kind of hoping that we would actually push it out again so I had a few more days of recovery. Oh well.

    The oncologist was also encouraged by the treatment so far. Based on his exam and his notes, he seems to think that my tumor in softer than it was – which is good (means the chemo is working). Unfortunately, the biopsy results on the third mass were not in yet, so I don’t know about that one yet. I did, however, find out that surgery should be planned for 2-4 weeks post chemo – and that it should not be delayed. This means that my Hawaii trip (see Breast Memorial) will be either the week of American Thanksgiving or the following week – with surgery the week we get back from Hawaii. I will book a follow-up appointment with the surgeon in the next week or so, so that we can get a date for surgery. Apparently, things fill up towards the end of the year. One advantage to doing it this year is that it will cost us less, as all our “out of pocket” maximums reset on January 1st.

    To avoid confusion – as I kept confusing myself – chemo day is now day 1 not day 0 – this aligns with the days that the doctors use as well. I’ve started a new chart for this cycle (adding in my exercise as well). So far it has the preventative stuff on it. One bit of good news is that I can take my arthritis NSAID anytime, they just don’t want me to take aspirin. Since the arthritis meds also significantly reduce the Neulasta side effects, this is huge for me, as it really helps. The oncologist recommended taking it preventatively, so I’ve added it to my chart as a reminder.

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  • Preparing for neuropathy

    I have been thinking about neuropathy a bit lately – in part because several strong women in my support groups have been having neuropathy – specifically with the Taxol chemo. I’m currently on AC chemo, but when that is finished, I do 12 weeks of taxol.

    Neuropathy is one of the potential side effects. It can happen in both hands and feet. In hands it means that typing becomes challenging as you cannot feel your fingers and fine motor skills become challenging. In the feet, walking and biking become a challenge. For biking, the issue is not so much the pedaling (I have clip pedals), but rather the stopping. When you stop you typically put one foot on the ground, this can be a challenge if you cannot feel your foot!

    To deal with neuropathy in my hands (if it happens), I will likely be using Siri a lot. I already use dictation a lot on my iPhone so that I rarely ever type anything using the iPhone keyboard. I have dictation turned on for my Mac, so I all I need to do is hit the fn key twice and then talk to my computer, and the words appear. I can do about a paragraph at a time. It is truly amazing to see just how much voice recognition software has improved over the years. For those using PCs, I can highly recommend Dragon Naturally Speaking. I’m not sure how well it works with different accents, but it seems to do Canadian pretty well (although words like tour need to be trained).

    To deal with neuropathy in my feet, we are looking into stabilizers for my recumbent. I had originally thought I would need a trike, but we really don’t have the space for one in our apartment, plus the cost is a bit much for something that I would only need temporarily. I will need something to help with balance if I have neuropathy, but also after surgery. The big advantage to my recumbent is that it has under-seat steering, so I don’t need to lift my arms to steer. However, there is an issue with balance. We have since discovered that one can buy various stabilizers for bikes. These are like training wheels but designed for adult bikes, and are much sturdier. Now we just need to research which stabilizers work best for my ‘bent.

    Another issue we need to deal with is groceries. Yesterday, after grocery shopping, I couldn’t carry the groceries back to the apartment. I had to make three trips, because any weight on my left side caused bleeding at my biopsy site. So, we will be looking around for a cute cart that will allow me to load groceries from the car and pull them up to the apartment. I had a cute one from IKEA in Ottawa, but ended up leaving it there when I moved.

    So, planning Becky is hoping for the best but planning for contingencies just in case.

     

     

  • Not without incident

    So my last post on more extreme reactions didn’t exactly get it right. With the blisters still progressing I called the on-call oncologist who didn’t think it was related to the chemo. The location of the sores and my comments about allergic reaction sent her on the wrong track. I took a couple Benadryl as suggested and observed; however, the blisters continued.

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    After picking up mom and going to support group, I decided it made more sense to stop in at emergency at Stanford than drive home and call the oncologist again, who mentioned that they would need to be seen if the problem persisted. We figured that it was a good idea to check out the emergency procedures anyways, while I was happily ambulatory and not “really sick”, just in case I needed the services at a later time.

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    After five hours and consultations with the internal medicine resident, oncology resident, on-call oncology fellow, dermatology resident, and on-call dermatology attending (who happened to the be the director of oncology dermatology) it was diagnosed as a reaction to the chemotherapy (Toxic erythema of chemotherapy). What had put people off of the diagnosis earlier is the atypical location of the blisters and the fact that I was doing so well otherwise. They were worried about Steven-Johnson syndrome (SJS), which would have been more severe and would have required IV corticosteroids.

    So after five hours we were off to a pharmacy to pick up some creams to help with the symptoms. With this, they treat the symptoms. They don’t change the chemo as it is not considered a severe enough reaction to warrant a change. Unfortunately, the emerg folks at Stanford have out of date information about 24-hour pharmacies, so they sent us to a closed pharmacy. We decided to just go home and deal with it in the morning. In the mean time, ice and the cream I use to numb my port are keeping me sane.

  • Chemo day in pictures …

    Photo Jul 07, 7 28 10 AM

    Step one was to have the access placed into my port. This allows the nurse to draw blood for blood tests, but is also used for the infusion of chemo itself.

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    Since they need to wait for the blood test results, we had about a half hour between the blood draw and the appointment with the oncologist, so we went over for the standard tree picture. This one indicates how I was feeling.

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    And here is the more typical me with a smile on!

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    My first reaction came at all the pre-chemo drugs. I’m still not certain what they all were. Three of them were anti-nausea drugs and one is a steroid. I thought we had the print out of what they all were but I cannot find it.

    This is the Doxorbicin (or the A in the AC regime). It is administered directly by the nurse. It was followed by Cyclophaphouride (C) which was a 1 hour IV drip. Although the appointment was for five hours, it didn’t take that long. I totally broke down when she brought the tubes of red stuff – but not nearly as much as I expected I would. The emotional breakdowns are inevitable.
     Photo Jul 07, 10 15 01 AMThis one was actually taken at the beginning while we were waiting for the nurse (notice the IV isn’t hooked up yet). Afterwards I was looking a little on the green side – but not feeling too bad. The steroids wore off at about 3-4 pm and the nausea started to kick in. Hope that ends today!

  • I’m ready

    I am so ready to make the transition from someone with breast cancer to someone fighting breast cancer. Tomorrow morning, bright and early, I begin chemotherapy – assuming the heart ultrasound and blood tests say I’m healthy. Ironic (in an Alanis Morissette kinda way), the idea of being in ‘excellent health’ and having cancer at the same time.

    I’ve got everything laid out for my ‘cancer’ bag – that is the bag I bring with me when I go up to Stanford for the day. I received it from BC Connections, a local Breast Cancer support organizations. It has proven to be very handy (both the bag and the organization itself, as this is where I go to support group on Saturday afternoons). I have even chosen my clothing for the day. I bought a new t-shirt that has a low neck line so that my port is easily accessible. I’ve included:

    • A nice warm blanket/wrap that I received from the Three Willows church where my in-laws go (thank-you).
    • A scarf that I received from my friend Maha in Egypt (thank-you).
    • Care squares that came from a family friend (thank-you).
    • A teddy bear that Scott brought me when I was in the hospital for surgery before we were married (with the Canadian connection Hudson Bay sweater).
    • Some snacks and electrolyte mixes to add to my water bottle.
    • My cancer treatment binder, which includes a bunch a cards and the caring card I received from the Ottawa First Unitarian Congregation (thank-you), the card my mom sent with a hope rock on it, and various post cards sent from distant friends (thank-you).
    • Headphones, so I can watch TV or listen to music or podcasts. I have a collection of Vinyl Cafe Stories and Under the Influence podcasts preloaded on my iPhone.

    2014-07-06 07.03.36I hope I’m not forgetting anything. I will also bring both my laptop, my iPad, and iPhone. I have no idea what I’m going to feel like doing during chemo. Scott will be there to help lug my stuff – bringing both the laptop and iPad seems a little redundant, but if I am in the mood for any serious writing (beyond blogging), my laptop has scrivener on it. Plus my laptop let’s me watch TV shows from Canadian networks, which I cannot do on my iPad.

    I’d also like to thank John and especially Alison for the lovely quilt they sent. BC Connections had quilts for anyone going through chemo but I chose not to take one, as I see so many other women that need it more than I do. The following Monday, I received a lovely quilt from Alison and John in the mail. It has turned out to be perfect for our bed, as our down duvet was too warm for this time of year, but going with a just a duvet cover wasn’t warm enough – we were having trouble finding just the right balance, and the quilt is proving to be just that.

    Everything that I’ve read so far about chemo side effects says that it varies by the person. I’ll either be tired for the first few days or overly energetic for the first few days and then tired towards the end of the cycle. If you know me, you know that I like to plan things. This whole uncertainty over how I will react is driving me crazy. I just need to know if I’ll be able to get some work done for a few days here and there or not.

    Since diagnosis, my life has been pretty focused around improving my health (lots of long bike rides and long walks); enjoying myself (sailing, going to Yosemite for a couple of days; various medical tests, scans and appointments; and learning a whole lot about breast cancer in general, and specifically about the treatment options for the type of cancer that I have. I have put all my contract work on hold (fortunately, that was possible). I’m now starting to go stir crazy, and hope to get back to some of that work – however, I just don’t know how I will react to chemo, so I’m afraid to jump into anything right now. So the wait game continues … today I wait … I’m going to go for a swim, go out to the market (now that my stomach is sorted, we need some food in the house – although chemo may change that too), and maybe even go for a bike ride.

     

     

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