BC Becky

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

Category: active treatment

  • That dreaded 50%

    That dreaded 50%

    Fifty percent was a number thrown out there, related to recurrence after a regional recurrence. This was the first time someone threw a number out there and it had me unsettled. When I meet with my oncologist next week, I will talk to him more about prognosis. I’ve done some research, and 50% is on the better end of the numbers that I’ve seen. I’ve two things going for me – the length of time between my initial diagnosis and recurrence, and my age – both are indicators for better overall survival outcomes.

    The last few nights I’ve been really thinking about what this means. It isn’t that I’d die tomorrow if the cancer came back. Even with terminal breast cancer I’d likely be looking at several years – but they would be years with treatments – I’d be in forever treatment. My health would deteriorate and it will get more and more difficult to do the things I enjoy doing.

    When I was initially diagnosed in 2014, I couldn’t see past a three month horizon. It was over a year after treatment ended before I could start seeing more than three months ahead. That hasn’t been such an issue this time – at least until recently.

    The thing that I’m thinking of most now, is that I might only have one good summer left – or at least I can anticipate that this will be a good summer for me – for hiking and camping. I cannot guarantee that I will have more good summers – if the cancer comes back, then my health will likely deteriorate. It might sound pessimistic, but it is also realistic. The one thing that I can count on is that this should be a good summer for me health wise.

    And so, we will plan to have a good summer. We will also have a good spring – starting with the eclipse – we will get our van ready and make plans to go someplace – ideally someplace in nature for the eclipse. We saw a full solar eclipse a couple years ago that was so amazing. One of the things I enjoyed was being in nature and listening to how all the animals responded to the change in the sun. I would love to do that again in April.

    I might plan a trip to California in May. I had to cancel the trip I had planned in October due to treatment – so I have the credit on Air Canada for the plane ticket. I just need to decide when I want to go and book something. I’m waiting to see how radiation treatment goes before I make any firm plans.

    Then in June we are going to Iceland for almost two weeks. Iceland Air starts direct flights May 31. We will fly on a Monday and return a week and a half later on the Friday. We have booked a rental RV for the trip, so we can explore the country and camp. Although the latest eruption means we likely won’t be able to visit the Blue Lagoon, there are many other similar hot springs to visit. I’m looking forward to that being the real start of summer. Nova Scotia summers don’t really start until July.

    I hope to spend much of July, August, and maybe September camping around Nova Scotia. We were thinking maybe we would try to visit every Provincial Park. We have been living here for four years now, and have not spent much time seeing the province, and this summer was all about getting Treehouse built. Now that we live at Treehouse, we are hoping for a little more time to enjoy just being here. I’m looking forward to converting our van backing into the camping van – rather than a van for transporting various construction supplies or moving boxes. I miss sleeping in the van with my hubby and my puppy.

    And so, that 50% makes me want to seize the day. Carpe Diem.

  • Radiation Therapy

    Radiation Therapy

    The main purpose of our trip to Halifax last week was to consult with the radiation oncologist about radiation therapy. While we were waiting, I picked up a copy of all the various handouts they give when you are having radiation therapy. They provided some really useful information specific to having radiation therapy at the QEII (the hospital in Halifax).

    A skeletal image showing the lymphatic system indicating that the lymph nodes in the right axilla region have been removed.
    A skeletal image showing which lymph nodes were removed during my lymph node dissection

    The radiation oncologist explained that the target of the radiation would be on the lymph nodes along the same chain as the ones that were removed – that is the nodes that would be “next in line” if the cancer were to spread. These nodes are located in placed under bones and muscles making them difficult or impossible to operate on. In addition, if these nodes do get cancer, they can be very painful and there is little to be done about it. Radiation now would reduce the likelihood of the cancer returning to those nodes.

    A close of up the lymph node system showing the lymph nodes going under the collar bone.
    A closer look shows how the chain of lymph nodes moves under the collar bone towards the neck. There are also muscles and nerves that would be affected by a cancerous lymph node in that area.

    One of the unfortunate side effects is that there will be damage to the upper lobe of the lung. This will show up as scaring in x-rays. It is not expected to affect my breathing, as most people breath with their lower lungs – and I know that I certainly have since my initial mastectomy surgery – I rarely use the top of my lungs.

    The lymph nodes with the lung underneath showing how the target lymph nodes are right about the upper lobe of the lung.
    Shows the lymph system and the lungs. As you can see, the upper lymph nodes are above the upper lobe of the lung.

    The next step is to do an appointment for markings. In the US they call this appointment simulation. That is scheduled for Monday 15 January. The process of pre-treatment radiation markings involves using a CT scan to determine the exact areas that will be radiated. Pinhead-sized tattoos are then created to help locate these areas with precision during the actual radiation treatments.

    Once that is done, I’ll get a call to schedule my appointments. The person who does that also sets up accommodations in Halifax. The pamphlet says it is either at The Lodge that Gives or Point Pleasant Lodge. That being said, a friend of mine was put up at the Lord Nelson Hotel when her husband was having radiation. I think it really depends on availability and length of treatment. Either way, we will be staying in Halifax Monday – Friday for three weeks. They reserve the late Monday and early Friday treatment time slots for those of us who travel for treatment, which is nice. It will mean we can spent more time at home on the weekends.

    Finding the images for this blog post really helped me better understand where the nodes are that they are trying to radiate. I’m curious where the tattoos will be. These will be my first ever tattoos – hope this isn’t a gateway to getting more, although I’ve always thought getting an orange calla lily coming out of my port scar would be cool.

  • Scanxiety

    Scanxiety

    In my post from Tuesday, I mentioned that the radiation oncologist had ordered a head CT. This is to check to ensure there is no cancer in my brain – which is one of the places breast cancer likes to metastasize to. I’m amused that I can write that so nonchalantly without any emotion.

    I don’t yet have an appointment. The CT will be in Bridgewater, but I don’t think it was marked urgent as it wouldn’t change my current treatment.

    I am not anxious about it yet – in part because it hasn’t even been scheduled. My scanxiety (anxiety around scans) usually starts shortly before the scan itself – usually on the day of the exam or as I’m walking into the hospital to register. The height of the anxiety is in that time between the test itself and getting the results.

    I find that doctors here are slow to pass along results, especially some of the specialists. I don’t know for sure if the radiation oncologist would be slow or not, but my family doctor gets copied on the results, and I now have a deal with him that I get a call once new results come in.

    For now, no scanxiety yet. Mostly I’m focused on recovering from this last round of chemo and starting to think about three weeks of radiation in Halifax.

  • Lymphedema

    Lymphedema

    Yesterday, I summarized the key points from our trip to Halifax to see the radiation oncologist. There were many different things discussed in that consultation and in my blog post that require further explanation.

    The first topic I want to address is lymphedema. Since I already have lymphedema on my right side, the oncologist informed me that it will worsen and become permanent. The surgery increased my risk, and radiation will further increase it. However, since I already have lymphedema, the radiation is not increasing the risk but rather the severity.

    I have heard before that my lymphedema was permanent, but I am skeptical about it. The lymphatic system is not well understood by many people.

    The last time I had lymphedema, it lasted about six months. During that time, I wore compression garments every day and swam almost every day. At that point, I was swimming about a mile. I believe these two factors contributed to the resolution of lymphedema in my left arm.

    Unfortunately, I am currently unable to swim, and wearing compression garments is making it worse. On Christmas Eve, I burned my arm while cooking (yes, it was the arm affected by lymphedema). The wound is still healing and still bleeds when I change dressings. It is almost healed, but I will not be able to swim until it is completely healed. Once it is, I plan to swim as much as possible.

    Another step I am taking is seeing a physiotherapist for manual lymph drainage. I have booked weekly visits for January and will evaluate the results afterwards.

    I am also engaging in virtual boxing. One of the things that brought me to tears in the doctor’s office was the thought that I would no longer be able to go boxing. I cannot box with lymphedema as the impact exacerbates it. However, I can still engage in virtual boxing. When I injured myself last year and couldn’t box, I purchased a Quest VR headset. Now, I use an app called Supernatural to box to music in visually appealing environments. It is a great workout that does not involve impact (there is minor haptic feedback from the hand grips, but no impact).

    During radiation treatment, I will not be able to swim or receive manual lymph drainage. Virtual boxing may still be possible, but it remains to be seen. I will simply have to accept the situation as it is.

    The oncologist recommended considering compression sleeves once everything has settled down. Chemo prevents it from healing, and radiation aggravates it. Once I have completed radiation, I will be able to focus on things that can improve the condition.

    Despite the doctor’s assertion that lymphedema is permanent, I choose not to believe it. Only time will tell which one of us is correct!

  • Radiation therapy

    Radiation therapy

    Went up to Halifax today to have a consult with the radiation oncologist. I was expecting to be told that they recommended wide spectrum prophylactic radiation for four to six weeks – which would be a more typical treatment regime for someone on original diagnosis who had a lumpectomy and positive lymph nodes. That isn’t me.

    Both the oncologist and resident were clear I was special – that it would be experience that guided treatment recommendations. There is no direct clinical evidence-based recommendation for my specific case.

    We first saw the resident – who was there on her first day – One thing she mentioned was the difference between “local” recurrence – which would be if it recurred in the skin of the breast or chest wall, as that is still breast, and a regional recurrence which is what it is in my case – where the cancer recurred (and mutated) in the lymph nodes.

    At one point the oncologist said we were dealing with a different cancer – in that it has a totally different pathology from my previous cancers – with lower estrogen receptor and the new HER2 positive receptor. So, in many ways, we are dealing with this like a new cancer, hence the full chemo regime.

    She did throw a number out there, that no one else had mentioned – and that is that I have a 50% chance of recurrence – in part again because it is rare for the cancer to come back almost 10 years later. It isn’t that uncommon for it to mutate if it comes back, so the change in pathology isn’t a huge surprise.

    The radiation oncologist recommends radiation to specific lymph nodes that are further in from the ones that were removed. These are nodes that if they did get cancer, it would be very difficult to remove them surgically. One of them is very close to the brachial nerve which affects motion in your arm. Those who end up with tumors there are often in a lot of pain. There isn’t much she can do after a tumor grows there – but we can do radiation now to reduce the likelihood of spread to under 5%. So, although there aren’t specific numbers for me, there were a couple of numbers mentioned.

    The radiation would be for three weeks (15-sessions) and would only be to the series of lymph nodes (between the axilla where they were removed and the lymph node under under my collar bone near my neck). They won’t be doing radiation to my chest wall, sternum, or left side as there is nothing to warrant it. This makes me feel better, as I feel like what is suggested is very specific targeted radiation that has a very specific purpose, and not a general overall prophylactic radiation to “catch errant cancer cells”.

    The radiation oncologist (rad onc) mentioned that typically with HER2 disease they do a CT scan of the head as well as the core of the body. When I was diagnosed, they checked my bones and ensured that I didn’t have cancer there, but they didn’t validate that my brain is clear. With HER2, it is quite common to metastasize to the brain. She is going to order a head CT that can be done in Bridgewater. That is going to generate a whole new set of scanizety for me.

    The next steps for radiation is what is called a simulation or marking appointment. It is an appointment where you go to the radiation treatment centre and they use a CT find exactly what they want to irradiate, and then they measure and mark you – with small tattoos. These are used during treatment to ensure everything is lined up. A couple or few weeks after the simulation, treatment will start.

    They do have some things organized – for example, late Monday and early Friday appointment time slots are reserved for those who are staying at one of the lodges and are travelling home for the weekend – that we would be me. It was on my list of things to ask about, however, they had already answered it in one of the patient information leaflets that we picked up on the way in (to read while we were waiting). There are two lodges where they typically put people up during radiation treatment. All that is setup after the simulation appointment when they are making the specific radiation treatment schedule. I asked about Scott staying with me, and that did not seem to be an issue.

    We also asked the rad onc about lymphedema. This of course is the biggest risk, and for me, has already happened, so she can guarantee that radiation therapy isn’t going to make it any better. We asked about doing treatments for it while doing radiation, and that was not recommended. When I asked more about how it is treated here (as in Nova Scotia as opposed to California), she said that typically a physiotherapist does manual lymphatic massage, and once things stabilize you look at getting appropriate compression garments. It made me realize that I probably bought my garments too soon – they aren’t working well for me, and part of that is that the lymphedema hasn’t stabilized yet – it is quite variable and chemo and radiation won’t help the variability. It doesn’t hurt or really bother me much now, so I’m pretty much going to keep doing what I’ve been doing and make more concrete plans after radiation is complete. I have a lymphatic massage apt with my physiotherapist next week.

    Radiation cannot start until at least 4-weeks after my last chemo treatment. The nurse figured that I’d likely have my simulation appointment in two to three weeks. Radiation would likely start early to mid February. Since my birthday falls on a Friday this year, I don’t expect radiation to start until after my birthday.

    Overall, it feels like a good day. I went in expecting a recommendation of 6-weeks and broad treatment, and came out with a recommendation of 3-weeks and very specific treatment – which is something that I find my easier to get on board with.

  • Going out with a whimper

    Going out with a whimper

    For me, it looks like the year will be ending with a whimper. I feel like this last dose of TC was stronger than previous doses. It is certainly hitting me harder. I think I got lucky the last two cycles and came to expect it to not be too bad.

    What is making this cycle so much worse? Muscle/bone pains. It started out like the more familiar bone pain in my spine and hips – where a lot of bone marrow is made. But then it has turned into shooting pains in random areas – mostly my hips but also my ankles and wrists, upper arms, and knees. I think it is nerves misfiring which then causes my muscles to ache – but not the big muscles, rather all the little ones that support the big ones – which makes me feel weak when I walk – making me wonder if my hip or knee might give in.

    I’m also noticing a lot more neuropathy than previously. This means that I don’t feel my feet very well (or my fingertips – but I seem to be able to type). At this point, it isn’t painful neuropathy, just numbness.

    And so, for the most part, this New Year’s Eve, I’m lying in bed feeling sorry for myself, looking for a good book to read or a good movie to watch.

    The good news is that my tooth isn’t bothering me as much this morning. It was bothering me last night such that I feared I’d be calling the dentist this morning for an emergency root canal. Hopefully, that can stay stable enough that I can avoid the root canal for a couple more weeks and deal with it after I’ve recovered from this chemo round.

    Going into the new year, I will need to do a lot of reflection – reflection on what this whole recurrence means to me and how it might change what I’m doing – or not – as it doesn’t need to mean a change in anything. I just don’t know either way.

  • An Update and Some Chemo Brain Stories

    An Update and Some Chemo Brain Stories

    First, an update. After experiencing stress dreams, I left a message for my oncologist to inquire about the next steps and mentioned that I had not yet heard about a radiation oncology appointment. The following day, I had an appointment with the local General Practitioner Oncologist (GPO), which they referred to as a toxicity appointment, to ensure that I was fit to proceed with chemotherapy.

    During the appointment, I expressed my concern about the lack of information to the nurse and doctor, who reached out to my oncologist in Halifax. I discovered that they regularly communicate via text message and that my oncologist in Halifax was surprised that I had not yet been contacted by radiation oncology. As a result, the GPO here made an additional referral and provided an update, stating that my chemo was progressing as planned, with my last chemo session scheduled for December 27th, the first day they reopened after the Christmas/Boxing Day holiday.

    On Wednesday December 27ty, as I sat in the chemo chair, I was informed that my next appointment was to be in Halifax on January 16th, which was odd because I already knew I had a phone appointment with my oncologist around that time. I’m grateful that my oncologist doesn’t require me to drive into Halifax for appointments that mainly involve discussions without any physical exams. It saves both of us a lot of time. However, it would be great if they could implement video conference calls for oncology appointments, as they do for other telemedicine consultations. Fortunately, the situation is gradually improving.

    While the nurse was preparing my medication, I received a phone call from radiation oncology. My appointment is scheduled for Tuesday, January 2nd, in Halifax. They didn’t specify the duration, so I’m unsure if it will only be a consultation or if they will also include the simulation at the same time. There are many logistics to arrange because the radiation treatment will take place in Halifax, and it’s not feasible for me to drive there and back every day in February due to weather conditions and the 1 hour and 15 minutes round trip under normal circumstances.

    So, within a week, I will have a better understanding of the next steps. The GPO mentioned that radiation often starts four weeks after the last treatment, so it will likely be in the first week of February. I have a mugga scheduled on January 12th to check my heart, a follow-up with my medical oncologist on January 16th to discuss the overall strategy, and a Herceptin infusion on January 17th. January is going to be a busy month with medical appointments.

    Now, let me share a couple of stories about chemo brain. It affects me in peculiar ways, especially right after my TC infusion. I’m thankful I’m done those! I struggle with multitasking when experiencing chemo brain, and my thinking tends to be quite literal.

    The first incident happened when my husband was installing a water hose for the fridge. He told me to “watch the hose” to prevent it from spraying everywhere when he turned it on. So, I stood there watching it as he turned it on, and it sprayed everywhere. He didn’t instruct me to hold onto the hose to ensure it didn’t spray everywhere. It didn’t occur to me that I should be holding onto it. I simply followed his directions.

    Then, yesterday, he asked me to create some simple signs to be printed on 11 x 17 paper to guide the delivery drivers. So, I did as he requested and made the signs. I made the text as big as it could fit, but it never occurred to me to make the signs in landscape orientation so that the text would be larger! Of course, he didn’t notice until after printing – oops. The funny thing is, I remember thinking that I wanted the text to be larger, but it just didn’t cross my mind to change the page orientation.

    These are the kinds of silly things that happen with chemo brain. In one moment, I can handle higher-order thinking, and in the next, my brain takes things quite literally, and I struggle with multitasking (I attribute the latter issue to being interrupted from a writing project and transitioning to sign making, which involves different cognitive processes).

    I find it amusing when these incidents occur, as long as they don’t cause any significant problems. It’s surprising that it hasn’t happened more often given the intricate details I’ve been dealing with during construction. Fortunately, I’ve been able to rely on others for double checking at least some of my issues.

  • Anxiety

    Anxiety

    I used to use writing as a way to help process my emotions. I’m finding that I’m writing more about the mechanics of what I’m going through but not tapping into the emotions. I started writing a story about my recurrence, and how I feel so different than I did when I went through my initial treatment. Then I realized that all I had written was the detailed timeline of what happened – there was no emotion in it. It was just, I did this, I waited, I got this result.

    I had some emotions in the early days, but I didn’t blog about them. I didn’t want to start blogging about this cancer journey until we had some real information. Even then, I haven’t written much. I haven’t found a way to tap into my emotions – mostly I’m just living life numb, getting by one day at a time.

    I think that feeling is about to change. Last night I had an anxiety dream. It is the first time since all this started that my anxiety meds didn’t keep it all under control. I don’t remember what the dream was about specifically, but I do remember waking up and saying to myself – that was an anxiety dream.

    I think the anxiety is about not knowing the future. I’m close enough to the end of chemo (last one on December 27) that I want to now what is next in my treatment and when is it going to start. I know that I won’t be doing much in January as I’ll need to recover from the chemo and then get a root canal (what a way to celebrate getting over chemo!).

    I think it is in part that when people hear that it is my last chemo (this doesn’t include the year of herceptin), they ask about what is next. And I don’t know. I don’t know how long radiation will be. Part of me is hoping that I won’t need radiation. I know that isn’t rational, but it is how I’m feeling. I’m also wondering about future screening – when treatment is done. I’m fully aware that I initially had cancer on both sides, and this recurrence was only on one side. What does that mean for my likelihood of recurrence on that side (likely nothing and if something was starting up, this chemo probably knocked it out). Given my lower ER status, will I still need to do hormone therapy? What about Zometa, is that still on the table? So many questions. I see my oncologist in mid-January, but I don’t think I can wait that long.

    On another note, it doesn’t look like I’ll lose all my hair. It is weird. I have lost a lot of my hair, but some of the spikes from the last shave are actually growing. I can tell the old growth because of the colour. Any of the new hair coming in is more like clear baby fuzz. I do look enough like a cancer patient to have been asked if I was on chemo. I think it is the tiredness in my eyes (and lack of eyebrows) that is a sign.

    Last cycle, today was my nadir – my low day. I did some tasks in the morning and then proceeded to crash. I’m going to see how much I can do before I need to crash today. Yesterday I had a nice hour long nap in the afternoon which kept me going for the rest of the day. With Christmas coming, I have a few more tasks I want to get done. I don’t want to go anywhere near grocery stores this weekend!

  • Ouch my tooth

    Ouch my tooth

    Finished the worst of cycle three. The nausea was under much better control, that I didn’t feel nearly as bad. I did find that I tired easily and I slept for 13-hours on Sunday night.

    I also had a weird side effect that started on Monday and is just now resolving. I realized on Monday that I could not taste salt! When we had a power outage on Monday near dinner we grab some McDonalds and went to a friends for a visit. The fries didn’t taste like much – they just aren’t the same without the salt. The pistachios I tried also didn’t taste like much. Makes me wonder about the food I made – and how salty or unsalty it was! It is difficult to cook when your taste buds are lying to you! Fortunately by Wednesday night I was tasting salt again.

    I don’t recall whether ir was Monday or Tuesday but I’m definitely noticing neuropathy in my feet. It is odd because I can feel temperature and presure if there is enough of it, but not tactile sensations. It is really noticeable when I’m in the pool swimming. I’m going to have to start walking with my poles again. I noticed that I’ve had a few times where I’ve rolled my ankle while walking. I think that is from not noticing that the ground wasn’t level.

    My energy levels are certainly lower this cycle. I think I’m feeling the effects of low red blood cells. My white cells were normal before chemo – thanks to the white cell booster – but there is nothing that they do for the red cells. I suspect they will continue to dive – but I only have one more treatment of the CT (Taxotere and Cytoxan).

    I’m realizing that I know little about the side effect of radiation. From from what I’m reading the first couple of weeks will be mostly normal and the fatigue will start to set in and there may be (likely) skin issues (like a really bad sunburn). But that is all that I know of. I don’t know if there will be any other side effects.

    To complicate matters, I have a tooth infection. It needs a root canal. My dentist called up my oncologist and they chatted. I’m on an antibiotic now for a week which will hopefully calm the tooth down. We are trying to avoid doing the root canal until mid to late January when chemo is done and my blood counts have rebounded

    I’m certainly having a hard time taking it easy. It is in my nature to be go-go-go and with the final steps to getting condo certification happening, I find myself wanting to be helping get things done. I’ve been doing some small drywall repairs and will do some priming and painting soon. Of course, there is still some minor painting needed in my home,

    I also have some sewing projects I’m trying to get to. The good thing is, that when I’m too tired to do anything else usually I can still do some sewing.

  • Day 16

    Day 16

    Just when I thought I was in the clear, I got hit by a wall.

    I didn’t start the day tired – or at least I don’t remember starting the day tired.

    I put together a new ikea shelving unit and it exhausted me. I found that I had to stop and rest. I was sweating like crazy.

    I walked around the construction site doing an inventory on some tub surround work I’m doing, and did some light sanding. This took everything out of me. I came home and showered, all covered in dust and promptly laid down. I spent the majority of the afternoon asleep or in that state of awareness but not awakeness.

    I eventually dragged myself up to make some food.

    It is clear to me now that my schedule that shows my low white cell counts doesn’t account for my low red cells. This wasn’t the kind of fatigue that is resolved by taking a walk – rather it was pure exhaustion, where the effort of doing a little bit of physical work knocked me out. I gave myself permission to spend the rest of the day/evening in my chair watching TV.

    I suspect that tomorrow will be somewhat similar. I’ll try and get out for a walk or something to see how I feel. Given how much I slept this afternoon, I’m hoping that I still sleep well tonight. Sprinkler guy is coming as early as 7am tomorrow morning to fix the piping in my hubbies office (so I might actually get my office back – after I finish painting it!).

    Now it is time for me to chill.

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