BC Becky

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

Tag: bone pain

  • Picturing a morning sail

    This morning we headed off to San Francisco for a morning sail on USA 76 with ACSailingSF. We almost missed the boat, arriving just as they were about to cast off. Fortunately, we got there just in time, and they nicely sent someone up to fetch us at the gate.

    Hopping on the boat, I was immediately happy. After a little bone pain yesterday, I wasn’t sure I’d have the energy to get out sailing – but rather than it tiring me, sailing refreshed me. It was nice and windy (at least at first) so we had an excellent, and thrilling up wind leg.

    We brought the new GoPro, which I spent some time playing with. Unfortunately, most of my pictures involve either my fingers or the string tether in the corner of the camera. Since you cannot see what you are taking a picture of, I didn’t quite realize it. So, I’ve chosen a few pictures that turned out pretty well.

    Scott resting after having been one of the grinders raising the main.

    DCIM\100GOPRO
    Under sail!

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    Playing with selfies on the Go Pro.

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    Some video of Scott grinding as we tack on the up wind leg.

    I enjoyed some time right up at the front being reminded regularly with mist that we were on a body of salt water!

    At one point I even took off my hat and buff to feel the wind on my bare skull and of course get a bald head picture 🙂

    DCIM\100GOPRO

    After our sail, we had lunch with some friends on Pier 39. Overall, a great way to spend a Sunday.

  • 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!

  • This too shall pass

    Started at about 5pm last night, I felt these pulsing pains up my spine. By 8pm last night, they were excruciating whenever I was in a seated position. I was lucky that Mom was with me at support group, as she was able to drive me home. I could not imagine having to drive with this happening. I was able to be in the passenger seat with the seat partially reclined, so that I could navigate as mom got her first experience with California driving.

    I had been warned about what might happened during the Saturday support group, when one of the ladies explained it. I’m at my blood count low as well (nadir), so I’m also tired. The bone pain is caused by the neulasta, which is a white blood cell booster. What is happening is that as the chemo leaves my system, my bones start reproducing blood cells. My counts should rebound to almost normal in the next day or two. But the white blood cell booster means that my body is also suddenly producing an excess of white blood cells all at once. So the bones go from not producing new blood cells (or producing them slowly) to having a sudden growth spirt, and with that comes pain.

    The pain I have now is when I’m sitting (ironic, as I usually cannot work while standing as my arthritis gets in the way, and now I can only work while standing). I may also try going out for a walk, although it is a rather warm day out. I wish I could swim, but with my blood counts low, that is not recommended. I am also in pain if I lay down in the wrong position. So I need to be in just the right position in order to sleep. I’ve asked my oncologist for some good pain meds until this passes – just waiting to hear back. Unfortunately, Wednesday is not the best day to contact them, as my oncologists’ nurse doesn’t work Wednesday (there is someone that covers for her) and my doctor is on vacation this week, so the Wednesday nurse needs to track down the backup oncologist (who doesn’t know me) in order to get that prescription.

    If this happens next cycle, I shall be prepared for it! They actually don’t give you much other than anti-nausea meds for the first cycle, and they wait for you call. The idea is that everyone experiences chemo differently, so they don’t know what you will need. They wait until they find out what you need then prescribe it. At this point, it is all about managing the symptoms. Unless the problem is life threatening (more life threatening than the cancer), the goal is to keep with the chemo regime on schedule through to the end.

    One thing that I’ve learned though is that although neulasta is required for the AC regime I’m on, many women opt to not take it. The clinical evidence is that it reduces hospitalization by 20% – however if you are someone whose white blood cell count doesn’t dip too low, then it is an unnecessary precaution. In essence this is a medication that manages a side-effect of the chemo, and the side effects of the neulasta can be worse than the chemo itself. So it all becomes about deciding which is worse. What the neulasta allows me to do is be more active. If I didn’t take it, then I’d need to be a lot more careful about interacting with people during my low days, as my white blood cells might be a fair bit lower, and therefore my risk of infection higher. Since I need to interactions with people for my mental health, it probably makes more sense for me to deal with the neulasta side effects than it does for me to not take it.

    So my motto for day it, ‘this too shall pass’ … although I’m also hoping the nurse calls back soon to tell me they have sent a prescription into the drug store for me!

  • Post Chemo day 3

    Today was a mixed day. It began badly – actually it was more that last night ended badly. I was feeling pain in a way that I had never felt before. It is difficult to describe. They sometimes call it bone pain, but I would not call it that at all. It was like all my muscles (mostly in my abdomen head and neck hurt. My throat hurt – but it was a sore throat – rather it was the muscles around my throat hurt when I swallowed. Yuck.

    I was bummed that I couldn’t get the marijuana (MJ) yesterday. You see, I could get a license, but the dispensary we want to use (one that actually measures and labels the dosage of all items it sells) requires California ID and I don’t have that yet. They would not accept any other proof of living in California. So, I have on my to do list, when I’m feeling up to is, a trip to the DMV to wait in line forever to get a California ID. I tried scheduling an appointment, but all appointments are in August! Unfortunately, I wasn’t feeling up for it today. We do have an alternative. My husband can get a caregiver card, and since he has a California Drivers license, he will be permitted to go to the dispensary and buy stuff. Dispensary isn’t really the right word – it is actually a collective – and they include education on what exactly you are getting and various recommendations. For the side effects of chemo, the drugs you are looking for aren’t actually the THC (which causes the high) rather it is another drug. I took this picture in the doctors office. I’m actually looking forward to being permitted into the dispensary so that I can actually learn more about it … in the mean time, I’d be happy with a few truffles that might help me sleep without being drugged up prescription pharmaceuticals.

    2014-07-09 12.21.43

     

    As the day progressed, I began to feel better. I think I really just needed to talk to a friend or two. I spend a couple of hours on Facetime and Skype talking to friends and that definitely helped ease the pains. I think also the Sudafed (pseudoephedrine HCl) helped – glad I had some – as far as I know you cannot get it in the US without other stuff like Tylenol mixed it. *** You can in Canada. It mades me a little spacey but it cleared up the fogginess in my head. I also walked over to Safeway to pick up Claritin (and took some immediately). They say that Claritin is the best thing to counteract the pains associated with the neulasta. We had asked about whether Reactin would work and were told it would. I can sadly report, that it did NOT. So adequately drugged up to counteract side effects, I’m feeling OK now. I check my temperature regularly to ensure I don’t have a fever.

    The one thing I felt this morning is that I really wanted a reiki treatment. This was interesting. I’ve had reiki a couple times before and didn’t really feel like I got much for it, but today, I craved it. I just wanted to feel that healing touch. I couldn’t get an appointment until tomorrow, but now I know. Next cycle, I will pre-book an appointment for the day after neulasta (or maybe even two appointments) just to help it clear my system.

    Instead, I went for an afternoon swim with my clothes on. As I’m sun sensitive, swimming in an outdoor pool in bright sunlight is a bad idea. So, with my clothes and swimcap on, I’m almost completely covered. It was magical. And the feel of my wet clothes against my skin had the effect that I was hoping for in the reiki treatment I couldn’t get. With each stroke across the pool my shirt and capris gently massaged my skin in the slightly salty swimming pool water. It was magical – and exactly what I needed.  I found myself floating and kicking in snorkeling position, head down blowing bubbles. Next time, I hope to have the new Go Pro setup, and then I can take videos of the patterns on the bottom of the pool as I swim around. Anyways, you get my point – it was the magic that I needed for a day that didn’t begin too well.

    I think more than anything, with the new pains in my body, that reality is starting to set in. I am powerless against some of these pains, and that is difficult to accept. It is also that the sensations are new – so I don’t know how to react to them – I don’t know what I can do to ease the pains – and popping yet another pill isn’t exactly what I want to be doing – but yes, to those who have asked, I am taking my anti-nausea meds pretty strictly.

    My outlook at the end of today is better. I do hope I wake up tomorrow feeling a little more energy – need to get the apartment ready for my mom to arrive on Saturday 🙂

    *** Although this is what I believed at the time, it is not true. The medication is available from the pharmacist, you just need to ask and show ID.

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