BC Becky

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

Category: active treatment

  • I want to be a sign of hope not despair

    I want my journey and this blog to describe what is real – what it is really like to go through this experience. I also want it to provide a level of hope for someone who is going this this experience.

    I could say that before this recurrence, my blog was about hope – or at least the story was ending well – with going through the experience and moving on to a healthy life after cancer.

    Now, I’m reminded of something my friend Lori said at a support group meeting – she was one of the few people in the meeting with stage 4 breast cancer – the uncurable kind. There were many others in the room who were newly diagnosed with early stage disease (the curable kind). She said that she felt like she was everyones worst nightmare. That idea that she was exactly what everyone else didn’t want to be. Sometimes I feel that way too. I feel like people don’t want to hear about my current journey because it is too scary. It is exactly what someone with early stage disease doesn’t want to hear about.

    But I’m not that sign of despair – at least not right now. Through some miracle, my cancer was caught as a local recurrence – so it is still being treated as curable. It is not stage four metastatic – although that nasty metastatic word is officially used in my medical reports. It is described as a metastasis to the axillary lymph nodes. It has spread, just not to the parts where we know it cannot be controlled.

    I haven’t really thought a lot about what this means. I thought that I wanted to know a prognosis when I talked to my oncologist. He didn’t give a number. His comment was that because of the HER2 status, we have another tool to target the cancer that is highly effective. He gave me hope that this is curable.

    I remember when my mom was diagnosed with state 4 kidney cancer. One of the doctors called it a “grim” prognosis. “Grim” turned out to be six weeks. My appointment with my oncologist was nothing like that. It felt more like my first diagnosis except with a lot less information. There is no staging with the recurrence. There was no number that represented a prognosis.

    When I think about it, the prognosis number was something that was used to determine the type of treatment. Calculations were done that said that my prognosis improved by x percent if I had chemotherapy. That wasn’t a question this time – again because of the HER2 status.

    I do want my blog to be something that anybody can feel comfortable reading – regardless of where they are in their journey. But I also want it to be a place where I can tell the truth. The process of writing often brings out feelings that I didn’t realize I had. I don’t want to have to hold back on my feelings. I don’t want to have to put out a sense of forever optimism because sometimes I’m just not feeling that way.

    Today, I’m still feeling crappy – but now I feel more like I have a cold than anything else. My nose is stuffy and I have a headache. I talked to the GPO (General Practice Oncologist) who was on duty today about my troublesome weekend, but also how I was currently feeling. He prescribed a nasal spray and recommended a covid test (which was negative). We talked about when I can and when I shouldn’t take tylenol. I had a low grade fever – 37.4 – which wasn’t considered enough to be of concern, and so I could take tylenol but I needed to check my temperature again if I felt the need for tylenol later. The process is pretty much that I check my temp before taking either Tylenol or Advil. I wish I didn’t have to take either, but there is no good reason to suffer unnecessarily. If the meds help to manage the symptons, then they are worth taking.

    I am to call the doctor again tomorrow. If my sinuses don’t start to clear up, they will likely prescribe an antibiotic – mostly because I’m on chemo and headed towards my nadir (that time in the cycle where my blood counts are lowest and infection is most serious). I’m hoping a good nights sleep will help me feel better in the morning.

    On another note, I’ve been trying to find a decent pattern for making myself chemo caps. I’m looking for something relatively simple in a comfortable jersey knit fabric (or light fleece). If you like doing internet research, please let me know of any patterns you find that might be decent. I’m OK to pay for patterns as long as they don’t suck. My internet searches haven’t been hugely effective, so I’d be happy for some help. Thanks.

  • Don’t remember it being this bad

    I remember blogging about how day 3 was “just plain hard”, but I don’t remember feeling nearly has bad as I have felt over the last two nights.

    I was mostly fine on Friday during the day. I got my Lapelga shot (white blood cell booster) at about 2pm. I used the VON, so a nurse came to administer it. I don’t think we will bother with that for next time as it takes too much of both her and my time. The shot is pretty simple to do. This is given 48 hours after chemo, rather than 24 – so I expected that day 4 might be a struggle rather than day 3 as this booster can have some pretty rotten side effects.

    I seem to be mostly OK until Friday evening. I’d had a headache and stuffiness but hadn’t done anything for it. Friday night I took some Tylenol (after validating that I didn’t have a fever). I don’t remember too much of the specifics of the time between Friday evening and Sunday morning other than a short walk Saturday morning and then generally feeling super crappy all day.

    At one point I started to feel some zaps of bone pain. I remember that advil helped it, but didn’t have any in the house. I had to send my hubby out to get some.

    Then, near dinner time with a very stuffed up head, it occurred to me to look at the drug reaction forms I’d been given – which included what you could do about it. Apparently the Cytoxan can cause the sinus / stuffiness that I was feeling and that I was permitted to take sudafed. Unfortunately, I didn’t have any in the house so I sent Scott off to the drug store to get some. Poor guy, he is busy and I felt like I kept having to send him out for things.

    Last night didn’t go so well either. I was still feeling crappy and hoping to just sleep it away – except I couldn’t sleep. It wasn’t until around 3am before I remembered that I have some medication that I can take when I’m having issues with insomnia. When I got up to take it, I took out my bite guard to discover that my mouth was all thrushy – yuck. The sore throat that I had since pretty much the start of chemo had led to thrush – which I’m prone to and when my immune system is getting kicked thrush can get out of control. Fortunately, I had some meds from 5 years ago for it (only expired last year – so good enough to get my through the weekend). I took some of them as well as the pills I needed to sleep – and eventually was met my slumber.

    I woke up not feeling great but not feeling nearly as crappy as I had been. I was still stuffy, so I took another sudafed. Throughout the day, I’ve had the odd zap of bone pain, and took a little more advil a short while ago which seems to help. I’m starting to get my energy back, but it doesn’t take much to exhaust me.

    I got out for a short walk today – not sure really if it was that “short” – it was a nice walk on a day that is slightly cooler than yesterday. When I got back I needed to sit and relax a bit, as the walk had done me in. I am feeling a level of fatigue that surprises me.

    I hope that tomorrow will be a better day – with a little more energy returning. I have a reiki appointment, so hopefully this new reiki healer can help clear a few things up and help my body heal. My arm isn’t feeling as weak from the surgery as it had been, but that might be because I spent the better part of the last two days in bed rather than doing anything.

    I wasn’t able to cook last night and wasn’t sure how I was going to feel tonight – so I reached out to a couple of neighbours. I know for next cycle that we will really appreciate someone making / delivering dinner for Saturday night and Sunday night post chemo. I think in California, we were able to rely more on take-out and ordering foods in. With celiac that is a lot more difficult, and living in a small town means very view options. It is good that I can lean on a few of my neighbours. I may also be more prepared next time by making a couple of things in advance that are easy to reheat. With the recent move, that level of preparation just hasn’t been feasible.

    Overally, I think I’m past the work of the yuckiness. I still have the nadir when the blood cells are low, so I don’t know how that will affect my energy, but in theory I shouldn’t also be dealing with headaches and bone pain then – so simply fatigue (if there is such as a thing as simple fatigue).

    One day four done, three more to go. If the second cycle doesn’t go better, I’m not sure I’m going to make it through a third. Ya – it was that bad.

    This evening, things are starting to take a turn for the better.

  • So far so good

    So far so good

    With this chemo regime I take steriod pills and anti nausea pills for three days – the day before chemo, chemo day, and the following day. This means that for days 1 and 2 I’m pretty hyper. My neighbours and friends notices that I talk faster and move faster – but by mid afternoon of day 2, I was slowing down. but got another boost after a nap and meal and my last dose of evening steriods.

    One thing that I’m noticing is a lack of appetite, but still a need to eat. The lower appetite causes me to get a little handry and lethargic before I realize what the problem is. I have a vague recollection of this and almost running into trouble driving home from support group one day during my first chemo experience in 2014. I need to remember to always have snacks with me and to eat them right away when I start to feel something, rather than just waiting a few more minutes – as I forgot and minutes turn to hours. One I get food I am starving.

    I didn’t sleep well thei night after chemo – I left for a few hours and then was wide awake from 3-6am – I used that time to get a bunch of computer work done which was nice. I went back to sleep at 6 and slept until 9:30am. I have learned to not to fight the insomnia but rather to use it to my advantage. Last night I slept from midnight until 6am, so that is better. Although I was up frequently in the night to pee – so that kept waking Cali up. She is going to be a tired puppy all day today as she is still recovering from the overstimulation of two days of daycare.

    Today I’m hoping to use some of my more energy to do some purging and organizing over at the house. I’m going spend a few hours at our house (rather than our new place at Treehouse) going through clothing and such that hasn’t made its way here. I’m going to try to be a bit ruthless in what I bring over – as I just don’t need most of the stuff and it can be burdensome. Of course, then there is the kitchen stuff that I really do want! My kitchen here is starting to look pretty well stocked (almost too stocked).

    I’m wondering about my change in taste as my dinner last night didn’t taste like I expected it to. It is heard to say whether it was not as good, or just my taste buds acting up. I did notice the sparkingly apple/pear juice that I usually really enjoy didn’t taste as good.

    Interesting that when I started writing this blog post I didn’t think I had a lot to say. The process of writing it and really thinking about it has helped me put a few connections together. Knock-on-wood, so fare this is easier than last time.

    One other difference is the Nuelata type drug – after AC I was getting it within 24 hours. With TC is it not before 48 hours. Hopefully that extra 24 hours will help with white blood cell low from the chemo better correspond with the booster causing less bone pain. That is a theory anyways. I’m really hoping for that because I cannot swim again until Wednesday once my port has fully healed.

    I’ve found a reiki healer in town and will try her out on Monday. I hope it works out, as I recall from my last chemo that reiki was the thing I felt I needed the most. I don’t have the strong draw towards it yet, but I might by Monday.

    I also now have a weekly appointment for lymph drainage massage for my right arm (mostly forearm and hand). I ordered custom garments but they haven’t come in yet. There are two people in town that do it, one massage, and one physio, which is awesome. I’ve used up all my physio for the year on my insurance so I’m out of pocket for that (totally worth it), so it is good to have the massage option available.

    I got my chemo schedule – Nov 15, Dec 6, and Dec 27 – so that will take me right up to the end of the year. I continue with herceptin every 3 weeks for year, but that treatment (an immnotherapy rather than a chemotherapy) is much friendlier on my body.

    With the three week regime it isn’t as clear to me when I will start losing my hair – but sometime around 10-15 days post chemo. I ask one of my neighbours who always have fun hair to do something to might either today or on the weekend. Her mom has some left over coloured henna so we might shave some of the bottom and do some fun henna colour patterns. I think that will be amusing if nothing else. Why not?

  • I miss my mom – and my first treatment

    I miss my mom – and my first treatment

    I didn’t really expect that sensation to hit. Last night I realized that one of the things that I was missing this time around is my mom. When I was first diagnosed the recurrence, I was glad to not have to tell her. That was one of the hardest things I had to do. But this time, I realize that what I’m missing is my mom. I’m missing that sense that someone is holding me the only way a mom can. I have a lot more support this time around, but it isn’t the same as feeling your mom is there for you. I miss her so much.

    I’m writing this from the chemo chair at the Bridgewater hospital. I have happy to learn that they had a whole gluten free menu for their lunch. Hopefully the bread doesn’t suck. I was able to order a grilled cheese sandwich, green beans, a salad with egg, and vanilla ice cream. That feels like a lot of food right now, but the second dose of dexamethasone is kicking in and that is making my appetite start to build.

    Access to my port went well. Before I left home this morning, I sprayed benadryl spray around the whole area of the port. I then put a bunch of emla cream (a cream with lidocaine in it to numb the area), then covered it with a mepore bandage to help it soak in. It meant that it was on for over an hour before they tried to access the port – which made it less painful. The steristrips came off today. The incisions have healed well. I’m hoping to be able to swim a few days after the white blood cell booster that I get on Friday.

    For today’s infusion, it is a 90 minute infusion of Herceptin (they call it Trastuzumab). Because this is the first dose, we will wait 1 hour after the dose before continuing. For future appointments, it will be 30 minutes of Trastuzumab followed immediately by the Taxotere (Docetaxel) and Cytoxan (Cyclophosphamide). Each of those will take about an hour, and there is a flush (about 10 minutes) between each. Today will be long day, next time things will run faster, but even faster I’m looking at about 3.5-4 hours. Fortunately this is every three weeks and not more frequently.

    We were informed that the “toxic” part will last about 7 days. That means that for the first seven days we need to take care to reduce anyone getting exposed to my body fluids – including my dear puppy. We will keep puppy in overnight daycare on infusion day and the following day. Then she can come home as long as I’m not sweating too much or vomiting. We will make arrangements for Treehouse and other friends to take Cali if we need someone to take her quickly. I don’t want to give her up for the entire week, since mostly she sleeps with me on the bed or rolls up in the chair next to me while I work.

    And now I’m going to put my computer away and eat a donut!

  • Dates

    Dates

    The first time around, I found that I knew every date – the date of my diagnosis (June 12), first chemo (July 7), last chemo (Oct 30), first surgery (Nov 19), second surgery (Dec 17), third surgery (Mar 17) … this time, I have not been paying attention to dates. They don’t matter to me. I cannot remember my surgery date – I think it was in August but might have been September. I would have to look it up on my calendar.

    Last Wednesday I had my port surgery. Friday I had my first muga – looking at the blood flow through the ventricles in your heart. In this case, the test was a baseline before chemotherapy. That will help determine if the chemotherapy is causing any damage.

    It was interesting, they called on Thursday to book the muga. They said “you doctor wants the test before Oct 24, and they only slot we have before then is 10:30 tomorrow”. Hmmm. OK. I knew that they only did the muga test on Thursdays. They knew I needed it on Monday, so I’m not sure why it took them so look to book it. But anyways, what was interesting was the mention of an Oct 24 date.

    Then I get a call from the VON (Victoria Order of Nurses – these are the homecare nurses that come to do wound checks and give injections). They let me know that they were scheduled to come on Oct 27 to given me an injection. The injection they are giving me is given at least 48-hours post chemo and is a white blood cell booster. It is similar to the neulasta that I did with AC chemo. That too was interesting. Given those two bits of information, I derived that I’d be having chemo on Wednesday.

    Friday I finally got the call. I have chemo booked for Wednesday. It will start at 9am and will be a long day. It involves a loading dose of herceptin, plus taxotere and cytoxan. I can expect to be there at least six hours. My first comment was that I’d need to bring lunch. She said that they would feed me – well that is new, I was only ever given snacks at Stanford. I highlighted that I had celiac, and she said she’d mention it so hopefully they would have something for me. I’ll also bring a sandwich just in case.

    The first half hour will involve education and so I’m allowed to have a caregiver with me. After that, my caregiver is welcome to wait in another lounge or something – but in the infusion centre with me as they don’t have the space. I found that interesting, as hubby came to almost all of my previous chemos. It is odd to think of doing this without anyone as a caregiver there. On the other hand, I’m sure that hubby will be happy to just drop me off and get back to work helping to finish building Treehouse Village. There is still a lot of work left to complete the community, and a bunch of it is falling on him to do.

    I have tried to remember that my job now is my health – before anything else. I’m trying to get out walking more – fortunately, now that we have moved, my puppy is back home making it necessary for me to walk her. I also had a lovely walk with a friend – again, nice to get out and walk on what was supposed to be a completely miserable day.

    The lymphedema in my right hand continues to be a problem. When I wear one of my sleeves from before it actually makes it worse. It is weird this time, as the swelling is mostly in my hand and forearm. I ordered a custom sleeve that should arrive in the next week or so. In the US, they pulled “fitted” sleeves from the shelf – off the rack. Here, they specifically measured and set the compression specifically where I need it. Hopefully the new sleeve with be more comfortable but also work.

    I did try out some of my VR boxing. It actually seems to help the arms – even when I’m not wearing a sleeve. Now the best thing for it would be swimming, but I’m not allowed to swim for another 10 days. So, VR boxing it is. I really enjoy doing it, so the biggest problem right now is not over doing it.

    I do find that I feel a little guilty for spending so much of my time walking and playing with the VR boxing. I don’t feel like I’m doing productive work. That being said, I spent a lot of time pulling my kitchen together. It is a mostly functional kitchen – although I’m still missing a few things. I’m trying to create an awesome kitchen here without taking too much away from the kitchen at the house – as people are living there and using it. It seems that every other day, I’m headed over there to take away another kitchen gadget that I cannot live without.

    I’ve been asked how I am feeling about chemo. This morning I was feeling rather lonely about it. I’m surrounded by people but they aren’t the gals from my support group who really get it. My neighbours want to help, but don’t really know how to. I’m pretty good at asking for what I need, but right now I don’t know what that is. I just wish I felt healthy. The lymph node dissection took more out of me than I expected. The port surgery is pretty minor, but it too is giving my body one more thing to heal.

    I also want to find the time to do some sewing – which feels like a luxury when the house is still full of boxes. Things are a complete mess in my office, where my sewing machines are. But I want to make a head covering or two before I need one – and that won’t be long. Last time it was really predictable – a couple of days after the second dose. With this chemo is isn’t so clear – it could start a few days after or a couple of weeks after. Either way, it won’t be long before I no longer have hair.

    I’m not afraid of losing my hair again – what I’m concerned about it whether or not it will grow back. Taxotere has been known to cause permanent hair loss. My oncologist dismissed that as a concern saying that it is very rare – but I know people who had to deal with it – so I know that it does happen. And since this is my second round of hair loss, it might be different.

    There is also the issue with nails. My toe nails on my big toes were a problem with chemo last time. I don’t know what they will be like this time. They might even fall out. They stopped growing (just the big toe nails) a few years ago. I’ve always had such nice nails – especially my finger nails. I wonder what this regime is going to do with them.

    And so, I’m doing some form of preparing. In some ways I’m nesting, but mostly I’m biding my time. With any luck we will get some nice weather for a few days so I can beach a couple of times before I start to feel like crap. I hate that treatment makes you feel bad – it is worse than the disease!

  • Ported

    Ported

    Yesterday morning, before the sun, we got up and drove to the local hospital (only a five minute drive) for my port surgery. This time, hubby just dropped me off – he came to pick me up in recovery, but there was no point in him waiting in prep as I was the first patient of the day (so much so that when the surgeon came to visit me for the pre-surgery discussion.consent, she didn’t have her scrubs on yet!).

    I was able to be awake for the entire surgery – so twilight sedation. I could even participate in some of the conversation, however, that posed a challenge as I had an oxygen mask on. It now occurs to me that when I did try and talk they got concerned I was saying something about the surgery (like ouch) rather than joining the conversation.

    Surgery went smoothly. The port was installed on the left because of my lymphedema on the right. She didn’t want to do anything that would further add to the lymphedema.

    On the lymphedema front, on Tuesday I was measured for a custom sleeve. The person doing it was an LPN (licenced practical nurse). She measured various things and we talked about where more or less compression was needed. A custom sleeve was ordered. This is very different then in the US where I was fitted for off-the-shelf sleeves. My current sleeves (from the US) aren’t working particularly well – I’m finding that they are increasing the puffiness of my hand – since most of the fluid pressure is in my hand and lower arm rather than the entire arm. I’m hoping the custom compression helps.

    With the surgery, I’m not allowed to swim for two weeks – assuming the wound heals. There are two cuts this time, but they are rather minimal, and the port feels smaller than I remember my other port feeling.

    In other port news – as in teleported – we moved to Treehouse Village 🙂 I has been years in the making – literally. We have been part of this project since the fall of 2019, and are so delighted that we have finally gotten to a point where we can live here. It is especially important now, with my health challenges. Even last night, when I realized I didn’t have any tylenol, all I needed to do was text a neighbour and some showed up at my doorstep. Not that you couldn’t do that in other communities, just that it is a normal thing to do here, so it is so easy to ask for help. Another example, I mentioned at a welcoming gatherings that I forgot to pack dish towels. One of my neighbours dropped by and lent me some of hers. I didn’t even need to ask. That is what being part of an intentional community is all about. Begin there for each other.

    I don’t yet have an appointment for my Muga scan. I was expecting it to be this week, but it doesn’t look like it. Hopefully they will be able to use my port for the scan (rather than having to do an IV) – but they might just do an injection. I need to do the scan before starting chemo, but I’m also OK with delaying chemo a week. I’m doing my flu and Covid vaccines next week and I’d rather not start chemo the same week as the vaccines, as I then I won’t be able to tell what the cause is for any symptoms I get.

    And so I wait – I heal and I wait – and I unpack and try to make some sense of the disaster that is currently our home.

  • Monday, Tuesday, Wednesday – busy times

    Monday, Tuesday, Wednesday – busy times

    It is interesting that when I look back on my first diagnosis, I was blogging daily – sometimes multiple times per day. I haven’t been doing that this time. Part of it is because I’ve fallen out of the habit of writing, something that I want to get back into.

    I do have some crazy updates on my life. I will have surgery on Wednesday to have my port inserted. I hope they use twilight sedation like the last time but I won’t know until I get there. I’ll find out on Monday what time the surgery will be. I am hoping it is first thing so I don’t have to spend too much of the day fasting.

    We found out that the house we are staying at did not sell (the sale fell through), so the house is now listed again. This means that if anyone wants to view it, it needs to look like no one lives here – that doesn’t really work for Scott and I. Since our unit at Treehouse is almost ready, we decided to move in on Tuesday. That means we are now doing the scrabble to get things ready for us to live there. Fortunately, we can live with a minimal setup, and we don’t have that much stuff we need right away. Most of our stuff will stay at our house (another Treehouse family is living at our place until the end of November).

    My biggest challenge is not overdoing it – but also making sure I make the time to do the right things. My morning this morning started off with a short virtual boxing workout. I’m limited to the easy level and less than 15 minutes until I get the strength back in my right arm. I am so glad to get back to boxing – and I really love the VR version – as I cannot handle the impact of real boxing – which is sad. I miss the people at the gym. We had so much fun.

    Anyways, for exercise right now, I’m boxing and swimming first thing. Swimming isn’t my usually lap swimming, rather it involves laps where I do some deep dives, and some laps where I let me arms flow while on my back. The goal is to help reduce the lymphatic swelling in my right arm – and the pool helps.

    In addition to moving this week, I have a dentist appointment to get my teeth cleaned pre-chemo. They don’t recommend it during chemo as you have an increased risk of infection. On Tuesday I have a fitting appointment for new compression sleeves. I’m using my old ones, and they aren’t the best – they are better than nothing, but I’d like to get something better which are likely to be more effective and possibly more comfortable. On Wednesday I have surgery.

    I’m waiting on an appointment for the heart test and then a schedule for chemo. I will call the cancer navigator on Monday to see if I can get any more information on when these things are expected to start. Once I have dates, I can plan a little better.

    It occurred to me today that I will be living the next year in 3-week intervals. Although herceptin is well tolerated, it is still an infusion every three weeks. That will put a bit of a damper on summer holidays – as we will need to plan around the infusions. I don’t know if they will let me extend one out for a few weeks, or do one at a different hospital in Nova Scotia – so that we can go on a 6-week vacation. After so many years building Treehouse, I am looking forward to spending a little time travelling around the area in our van. I miss camping.

    Another thing I learned the first time was to plan to celebrate various milestones. The first big milestone will be the completion of TC chemo. By then my arm should be fully better (might still have lymphedema but I should have my strength back post surgery). Before I go into radiation, I’d like to do a ski trip. We are looking at Club Med in Charleveau Quebec. I like the idea of an all inclusive so that I don’t have to think about meals. Otherwise, I’d spend have the vacation planning meals and cooking – sure, it would be cheaper, but it would be much less of a vacation for me. Of course I cannot book anything until I have a sense of schedule – and they have a sale until Tuesday so hopefully that will all come together.

    And now, it is time to take my dear Cali for a walk before I go to site and do some more finishing work on my unit in preparation for our Tuesday move. I’m definitely not getting bored!

  • A surprise diagnosis

    A surprise diagnosis

    The oncologist appointment finally came Oct 10 – just after Thanksgiving. Since this was an in person appointment, it meant driving up to Halifax. We took the opportunity to book a hotel and spend the night, knowing that we had some shopping we wanted to do in the city.

    Shortly after the oncologist got into the office, he shared some unexpected news. The second round of pathology (which I wasn’t expecting) indicated that at least some of the cancer cells were HER2+. This changes everything. It means that there is no choice about chemo. He said that in some ways this is good news as it gives another way to target the cancer (especially, with the reduction in HR number (originally 95% now only 25%). The drug that is given specifically for HER2 is Herceptin and it is given as an infusion every three weeks for a year. Fortunately, for most people it has few side effects. Unfortunately, for herceptin to work it must initially be given with chemotherapy – in this case it will be TC (Taxotere and Cytoxan). This is given once every three weeks for four cycles. So, I will start chemo with TCH for four cycles, and then just H for a full year.

    Radiation is still necessary, and that can happen with herceptin, but not TC. So, the next step in treatment is TCH chemo then a recovery period then radiation. After that there might be endocrine therapy (also called hormone therpy) – but I haven’t tolerated that well in the past, so we will see. With the lower hormone numbers, it might not be worth the side effects.

    The key words the oncologist said were, NED (no evidence of disease) – the surgery removed all evidence of disease and the scans they did showed no disease in the organs or bones, and as a result they are treating this as curative. That is they expect this treatment to “cure” me.

    In the breast cancer world herceptin has been a miracle drug. It has taken a type of cancer that has been known to be aggressive and one of the deadliest forms of breast cancer to making it one of the most survivable forms. That is good news.

    I’m still getting my head around all this. There are a couple of things that need to happen before chemo can start. First I need to get a port. I don’t have usable veins in either arm, and with so many infusions, a port is the best way to go. The second thing is a heart test. Herceptin is also cardiotoxic – in that can damage your heart – fortunately, not in the same way as andriomacin which is one of the drugs I had the first time I had chemo.

    Unfortunately, TC also causes low white blood cells, so they typically give you a white blood cell booster. They call it something different than neulasta, but I think it is the same thing. It causes bone pain the same way and is recommended to take Reactin (interestingly, neulasta they recommended Claritin and I found Reactin to be less effective for me in the past). What is neat here is they will setup to have the VON (Victoria Order of Nurses) come to give the injection – so a nurse will come to be house 1-2 days after chemo to give the injection. I think I still need to get it from the pharmacy myself, that is a question I didn’t ask.

    All the chemotherapy can be done in Bridgewater. There are a couple of chemotherapy specialists here – he was short of calling them oncologists – but they are able to supervise the treatment, and report back to my oncologist. This means I don’t need to drive for over an hour to get to the chemo sessions. The port insertion will also happen in Bridgewater, likely by the same surgeon who did the node dissection. I continue to be amazed at the level of support given for treatment. Information doesn’t always flow as quickly as I’d like, but the treatment itself is moving forward well. I feel well taken care of and I’m not missing the US system. I certainly won’t miss the drives back and forth to Stanford for treatments and doctors appointments. The local hospital is a five minute drive – which makes getting to and from treatment a whole lot easier – and if I don’t want someone with me, that works out ok, as it is easy enough to call for a ride home afterwards – or if I’m overly energetic it is a 25 minute walk.

    Mentally and emotionally, I’m still trying to wrap my head around what all this means. Now that I like to sew and I’m setup for it, I’m looking forward to making my own head coverings. I’m not that concerned about losing my hair – more I’m concerned about how (and whether) it will grow back. Losing my hair will mean I look like a cancer patient – and I now live in a small town. That will feel different than before.

    In the mix with all this is that I’d really like to move into Treehouse before chemo starts – which will likely be within 2-3 weeks. It seems that 2-3 weeks is the pace of pretty much everything here.

    Moving into Treehouse is a bit daunting, but my neighbours are all pitching in to help get my unit ready. It is close – so I expect by the end of this weekend the work could be finished. Unfortunately, hubby is being pulled in many directions with so many critical project tasks that he cannot focus on our unit – so I’m doing what I can to get both it ready and what we need from the house moved. We aren’t moving much stuff – trying to move the minimal amount. Fortunately we still have our house, and don’t need to sell it soon – we want to finish renovating it before selling. There is another Treehouse family living here, which complicates things a little, but will also help – as they can do some of the packing up at the house for us – mostly this will be packing up things like all the food that is in the kitchen so it can be moved. I have most of my open food in boxes but a lot of other stuff that isn’t.

    Our kitchen at our new place isn’t ready quite yet. The upper cabinets need to be moved up, which I’m told isn’t a difficult task. Fortunately there are people other than hubby that can do it, so hopefully that will be done this weekend. We have doors for the upper cabinets, which is nice. We don’t have covers for the lower cabinets, which are almost all drawer pulls. This is good, as I don’t yet know what heights I want the various drawers to be at. I will have a chance to put things in the various drawers and we what makes most sense. I’m excited about having my own kitchen again with my own appliances. I really miss my induction cooktop!

    On top of all of this, I keep over doing it with my right arm. The incision has healed but the muscles haven’t. Plus I have swelling from lymphedema on the right arm and on my right side (making my right breast appear larger than the left! I had started swimming which really helps, but I pulled something in the arm this afternoon while throwing the ball at the beach. It had been weakened by all the lifting I did as we bought things first at Ikea then at Costco – helping with loading and unloading. This is where I need to stop and remember to ask for help. I feel like I’m not pulling my weight, asking other people, who I now are also tired, to help finish paint the unit so that it is ready for us to move in. I need to remind myself that people want to help – but also, I did a lot of painting of the first 18 units, and most of the painting in my unit – so it is OK to be asking for help.

    I’m reminded of something that my friend Janet Lee always says – something that she learned from Arnie and is making a documentary about – “Always ask for help”. I will try to make that one of my mantras.

  • The Cost of Appearances

    In reading the chapter ‘The Cost of Appearances’ in Arthur Frank’s (1991) At the Will of the Body, reminded me of my first Doxorubicin (Adriamycin other wise referred to as A chemo) chemotherapy injection. I wrote about the experience very briefly in a post The First Day Of Chemo on my blog. In my blog post, I failed to mention two things.

    The first reflection was that my husband wasn’t with me when the nurse came to give me that particular infusion. The social worker had come for a visit and my husband went off to talk to her. Somehow, with four AC chemo infusions, my husband was not there for any of the A injections. Doxorubicin is pushed into the veins by the chemo nurse. The rate of injection is closely controlled and the patient is monitored closely throughout. For me, the process took about 10 minutes, as I didn’t have any immediate problems with it. Some people experience immediate heart issues, which is what the nurses are watching for.

    The second reflection was that up until the point of the A infusion I was doing fine. I had taken some premeds (mostly pill form steroids) and had a saline drip running through the hose that led to my port. When the nurse came with syringes filled with the ‘red devil’, which is what Doxorubicin is often called because of it is red, I was hit with an intense emotion. I began to cry. Immediately the nurse drew the curtain. This is what I was remembering when I read the chapter on ‘The Cost of Appearances’.

    Even though emotions are allowed to happen, and respected, they are also hidden. In the shared infusion space, if the person is happy and chipper the curtains remain open. The room is a large space shared by several other people also going through infusions. But the moment you start to have an emotion that is seen to be negative, the curtain is drawn. You are ‘given your privacy’ but this is more about being hidden from the others in the room. Negative emotions are not allowed to be shared in the communal space – you are only allowed to share the positive emotions.

    This need to only share the positive means that patients feel the need to always be putting on a positive face. It denies them the opportunity to express the true emotions that they may be feeling. Sure, there were times when I was genuinely in a chipper mood. Most of the time my outward emotions echoed my inner emotions – but there were other times when I was scared and yet the fear was not validated. Expressing it was hidden from others, such that others who may be experiencing the same fear are not permitted to see that it is normal – that others have that feeling too.

    It seems to me that today I am hearing more about the lack of validation of feelings. Beth also blogged about it today in her post I bet you are glad you beat cancer. Fortunately, for the most part my care team does validate my experience. I blogged about my recent oncology appointment, where my oncologist validated that my crazy hormonal mood swings were real side effects, and we put a plan in place to do something about it. The validation alone made me feel a lot better.

  • “Brain Fog”

    One of the side effects that some people face during and after chemotherapy (and cancer treatment even without chemotherapy) is called “chemo fog”. Heck AnneMarie Ciccarella used it as a witty title for her blog Chemobrain .. In the Fog.

    Turns out that brain fog is also a side effect that some celiacs get when they eat gluten. There are other chemotherapy side effects that also overlap – the other one that is of particular interest to me is peripheral neuropathy. But anyways, let’s get back to brain fog.

    During chemo, I watched a presentation on chemo brain given by Living Beyond Breast Cancer. So, I though it was interesting to read an article about gluten brain fog from the Celiac Disease Foundation. What has struck me is that post cases listed cytokines as a possible reason for the fog. The chemo brain presentation did a good job of explaining it – it suggested that similar to when you have the flu, your body releases lots of cytokines that could be the cause of the fogginess. Chemotherapy or other cancer treatments could cause an increase in cytokine activity. In those with celiac disease, gluten could cause an over production. In both cases, this can lead to a sense of a foggy brain.

    For me this is just one more reason to completely cut gluten out of my diet. I am still in the ‘detox’ phase from the endoscopy. I am, however, finding that my brain is doing pretty good most of the time. I’m not in the fog that I was in when I was taking tamoxifen, which is also good.

    I am intrigued by the overlap between chemotherapy side effects and untreated celiac side effects. I wonder if there is any association between chemotherapy induced peripheral neuropathy (CIPN) and untreated celiac disease? I wonder if my brain fog an neuropathy during my taxol chemo treatments might have been reduced had I known about the celiac and been observing a gluten free diet? Unfortunately, we cannot set back the calendar and try again. We will likely never know. Oh well.

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