BC Becky

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

Category: Here we go again

  • Radiation is a mental struggle

    Radiation is a mental struggle

    Radiation treatment, in theory, is easier than chemo. It is easier on your body – in that the physical side effects are skin issues and fatigue. You don’t need to deal with all the other side effects of chemotherapy. However, for chemo I only had to convince myself to go four times. I had four cycles of TC chemo, so I had to go four times.

    For radiation, I need to go 15 times. I need to convince myself that this is a good idea. I need to mentally prepare for the treatment each time. The treatment itself only takes a few minutes, and the last couple of times I’ve barely had enough time to change before they called me in. But I find it a mental struggle – it weighs heavy on me.

    So far, I haven’t really had any side effects, except for a little worsening of my lymphedema – which I cannot do much to treat until radiation is over. I’ve been trying to elevate my arm as much as I can, and that does seem to help. Since we live more than an hour away, we are staying in Halifax during my treatment. I’m taking advantage of being in the big city to see a different lymphedema specialist. She can help with a consultation on compression and can do a treatment on my left side, which has a little swelling

    I’ll also get that root canal fixed. I don’t know if I blogged about the failed root canal – I spent two hours in the dentist chair in Bridgewater but the dentist couldn’t find the second root, so I’ve been referred to an endodontist in Halifax. I called them today and I now have an appointment booked for next week. That will save us a special trip into Halifax just for that.

    We are also eating out – but trying not to eat out too much and to enjoy it when we do. Tonight we are going to Drift and tomorrow we are going to The Bicycle Thief. We brought food for some lunches and breakfasts – so we don’t need to each out all our meals. We tried the cafeteria at the hospital today because they gave us vouchers, but they didn’t have anything gluten free except pre packaged muffins. So Scott had a nice omelette and I had a muffin and coffee. We might try some of the other hospital cafeterias to see if they are any better.

    Overall things are going well – just a little stress to keep things interesting.

  • Radiation and Losing Friends

    Radiation and Losing Friends

    Radiation started this week. So far it has only been two treatments. They go pretty fast. Immediately afterwards I find myself wondering if I’m feeling anything. Can I tell that the invisible beam is attacking part of my body?

    We did have a bit of a misunderstanding, for which the radiation oncologist felt bad. I might have just been misremembering. Radiation is on the lymph node chain the goes from my under arm to my neck – that part I knew – but it also covers around the surgical area. She showed us the CT and where the surgical clips were, and the radiation target areas which included the area between the surgical clips. It makes sense, I just somehow didn’t realize it.

    Last week I also lost a friend – Lilani – who loved to send me postcards from where ever she was travelling. She loved to send and receive letter mail. She was diagnosed metastatic just at the beginning of covid. She was such a light in this world, I am so sad that she is gone.

    I met Lilani at a young survivors support group when I was newly diagnosed. I had just had my head shaved, so had not lost my hair yet. She taught me how to tie a headscarf and commented that wearing dangly earrings was the key to making the headscarf look good. I remember that as if it were yesterday. Myself, Lilani, and Katie were all from south bay, so we carpooled together for that evening support group. Later, after initial treatment, I convinced her to join BAYS – which at the time was hosted at my house. BAYS – Bay Area Young Survivors – is a peer led support group and became my close friend circle. I miss being near all my BAYS friends, and I do hope to get down to California to visit them in the Spring. I need their hugs.

    I’m mad at cancer. One of the things I was looking forward to in the fall was a trip to California to see my friends – a trip that was cancelled when my recurrence was found. One of the friends I was looking forward to hugging was Lilani. Cancer took that away from me.

    On the drive to Halifax for my first radiation treatment, it occurred to me, the lymph nodes that I’m getting radiated are the same ones where Lilani found her metastatic lump. We had been at a sleep over and she noticed something under her collarbone. And now, I’m getting radiation under my collarbone. It is so triggering.

    Radiation also seems to have me crying more often. I don’t know if that is a side effect of the radiation or just a reaction to everything that is happening.

    Lilani and I at the end of the Avon Walk in 2015
  • Radiation, Recall, and Lymphedema

    Radiation, Recall, and Lymphedema

    Today I start radiation treatment. It is a 15-session spread over 4 weeks. The first two sessions are this week, then for the next week and the week after, I go for 5 days. For this week, they are putting us up in a hotel that is a short walking distance to the treatment center. They also said they would pay for a taxi to bring me if I wasn’t up for walking. It really isn’t that far.

    Food is going to be a challenge – but this trip it is really only dinner and breakfast. My appointments will be done before lunch. We will likely want to eat before we leave town.

    I’m also hoping to get a couple of short cross country skis in. The recent snow means there are a bunch of places with a couple/few km of trails nearby. We will be closer to them in Halifax than we are in Bridgewater. We may detour through the valley on our way home as there are many more places to cross country ski there.

    I am experiencing some random chemo recall side effects. I think it is because my cells are all regenerating at the same time which means they are also dying at the same time. This is definitely clear with my eyebrows. They grow back and then they all fall out again. It takes a year or two before the growth gets staggered so they aren’t all falling out at the same time. Fortunately, I seem to have kept my eyelashes. I had mouth sores over the last few days – and I wonder if this is just another chemo recall side effect. Hopefully they won’t keep coming back every three to four weeks – that would be annoying.

    A couple of days ago my left hand began to swell. Fortunately it appears to be just in my hand on the left side. I’m completely swelled on the right side. With the start of radiation I can no longer do lymphatic drainage massage. That will wait until after radiation. I’m not sure how long after radiation I’ll have to wait before I can go back. So far I haven’t had a lot of success with compression therapy, but I’m hoping to find a compression solution that works. I have also been swimming, however, I’m not allowed to swim during radiation so that is now on hold as well. Hopefully my arm doesn’t swell too much while I go through treatment. I’m still looking for someone who can actually treat lymphedema as I feel like I’m largely left to manage it on my own – using trial and error rather than know what might actually work. I’m glad that this isn’t my first experience with it; otherwise, I’d be a lot more stressed about it.

  • Going maskless

    Going maskless

    On Friday I went to a meeting – in person – without a mask. I realized that it has been the first time in at least 4 months that I have been in a room with people without both them and me wearing a mask.

    When I went through cancer the first time, I didn’t really worry too much about getting sick during chemo. I was taking a white blood cell booster which gave me the freedom to socialize without worrying too much. This time we had to worry about the various respiratory viruses going around.

    Mostly I want to celebrate this milestone in my treatment. I’m done chemo (yay). I still have a ways to go – but the acute ugly is done. I’m not looking forward to hormone therapy – but I’ll cross that bridge when I get there. Hopefully the cocktail they are recommending this time will be better than what I tried before.

  • All marked up

    All marked up

    On Thursday we made our way into Halifax for my radiation marking appointment. When I arrived at check in, there was a distinct lack of information. The person at reception showed me where to change and told me where to wait after I was finished changing – however, she didn’t tell me how I needed to change. I decided that I only needed to take my top off, as they were not looking at my lower body.

    They brought me into a room with a CT machine, lined me up, put some markings with pen on my body – specifically, under each armpit and one on top and the another on the bottom of my sternum. They put me in the CT, took a few pictures, then put small tattoos in the four spots. Three of the tattoos are generally covered by clothing, but if I were to wear a low cut shirt, you would see the top sternum one. Fortunately, it looks like a dark freckle.

    I can see why some breast cancer patients really dislike the radiation tattoos. Now, everytime I look in the mirror I see them. Everytime I shower, I see them. They are a constant reminder of radiation. That being said, I have a lot of scars that are constant reminders and I get used to them. I’m pretty sure I’ll get use to the tattoos as well.

    The next step is to wait for a phone call. The CT information goes to the radiation oncologist and she plans out the radiation. When there is availability of the radiation machines, they schedule it. It can start on any day of the week – so although it is 15-sessions, it might not start on a Monday. Typically, patients get about 2-days notice. When the phone call comes, they also schedule accommodations – either Hope Lodge or the Lord Elgin Hotel – depending on what is available. At this point, either works for us.

    We also decided to spend Friday Feb 9 in Halifax so we can see JP Cormier and the Nova Scotia Symphony do a Tribute to Gordon Lightfoot. It is a late birthday present.

    I’m also still waiting for the head CT. I haven’t received a call about it yet – so I’ll call the doctor’s office tomorrow and mention it. I will also ask them to mention that I have a port, so I need an appointment during the day when there is someone available to access it (if contrast is needed).

    Now go on with our lives until we get the phone call. I’ve spending my time doing various sewing projects, exercising, and doing some painting in our new home.

  • Some better news

    Some better news

    After much waiting during the day, my oncologist finally called. He said that next time I should go about my day normally, and if I miss his call he will call back – he makes sure he gets everyone who is scheduled for a phone consult. That is good to know.

    We talked about next steps, but there isn’t really much to report. My heart scan was good, so I will have my next Herceptin (trastuzumab) infusion today. This will be number five. Before the nine one, I’ll have another heart scan and then will talk again with my oncologist. At that point we will start talking about hormone therapy, since my cancer was also hormone positive (just not as highly positive as before).

    That timing allows me to heal from radiation before doing anything else. Since I’m on trastuzumab for a year, he is encouraging us to take this one step at a time. There is no rush – so I can heal from one thing before adding another. The first time I went through this, I jumped onto hormone therapy too early – I had not yet healed from surgery – such that I could not tell the cause of my various symptoms. So this time, it will be one step at a time.

    I’m not feeling worried about it. I’m just happy to be feeling as well as I do now, and plan to take advantage of three weeks in Halifax for radiation to explore the city and different parts of our province. We even bought tickets for a concert – a tribute to Gordon Lightfoot with JP Cormier and the Nova Scotia Symphony. We will need to stay an extra night in Halifax to see it – as it is a Friday night concert – but well worth it. It will be a late birthday present for me.

    After cycle 9 of trastuzumab we will begin trying an AI called Letrozole. I didn’t try that one last time, so hopefully this one will be nicer to me. I’ve also been in menopause for a while now, so it should be easier on my system than the last time I tried an AI – where I needed an ovarian blocker first. I do hope that it works out better this time.

    After we figure out the AI, then we will talk more about Zometa – which is a bone builder. It has some pretty harsh side effects but it also protects against bone metastasis.

    At the end of the call, I asked him for a prognosis. His words were interesting – starting by staying, it depends on whether the cancer comes back (well ya, no kidding). But his best guess number was around a 15-20% chance of it coming back. That is much nicer number than 50%. In part, his attributes this number to the chemo, trastuzumab, radiation, and hormone therapy. That is, we are doing a lot to help bring that number down from 50% to the 15-20%.

    For now, it is one step at a time. I’ll be in treatment until next fall – when I finish the one year of trastuzumab. Hopefully by then I’ll be stable on some kind of hormone therapy. That will be at least five years – but there is no point in looking that far forward at this time. As I’ve learned, a lot can happen after active treatment to change the longer term trajectory.

    I’m still sticking to my plan to make this a good summer – after five years of working on Treehouse, at times more than full time, we are both ready for a break. We had talked about taking time over the summer after I finished my PhD – but then cancer happened, so that break never happened. We need it now more than ever.

  • 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!

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