BC Becky

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

Author: Becky

  • 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.

  • Quality of my remaining life

    Quality of my remaining life

    I have been thinking a lot lately about the quality of my remaining life, and how that might be affected by chemo. Please don’t say to me “you’ve gone this before, you can do it again”. Those seem to be the worst words I can hear right now. I don’t want a repeat of what was before.

    The surgery I had, and now the lymphedema in my right arm have me feeling sorry for myself. I remind myself that this is temporary. My arm strength will come back and if I keep up the compression and get back into swimming, it will get better.

    I’ve started going back to the pool. I cannot really swim much as I don’t yet have strength in my right arm, but it is getting better. I need to start working those muscles more so they get stronger.

    But back to the quality of life thing. The last quick conversation I had with my oncologist, he mentioned chemo – specifically TC (Taxotere and Cytoxan). It is an “easier” chemo than the ACT I did the first time – however, I was almost 10 years younger then. I feel like I was in better shape – although I need to remind myself that before surgery I was in great shape.

    I’m worried that I will do chemo and it will negatively impact my quality of life for the rest of my life – and if the cancer comes back (or has already spread) then I’d be ruining some of the good time I have left. I’m having a harder time seeing beyond the treatment – especially not know what the treatment will be. I cannot see what things I will no longer be able to do.

    The surgery recovery has me down because it was more intense than I was expecting. This leads to me feeling sorry for myself.

    On the flip side, I am starting to get more involved on site again. I am starting to see a time when we can move into our new home!

  • Self-care and setbacks

    Self-care and setbacks

    I’m staying at a friends place, watching her dog (who is Cali’s bestie). It has been nice to be a little bit away from the chaos and I’ve been sleeping really well.

    Making coffee the other day I had a bit of a mishap. My forearm when over the steam of the kettle and I got a burn. It is not a bad burn -but it is in the arm that is healing. I notice the next day that the arm has started to swell – ugg. Fortunately, I have compression sleeves and already had an appointment booked to see my physiotherapist who also does lymphatic massage. Fortunately, she took measurements before surgery, so we could see how things had changed. The swelling isn’t horrible, but it definitely is present. Ugg.

    That brings me to self-care, and reminding myself that I need to get back into the pool. The pool is the best thing for lymphedema – it provides compression while you exercise. I can’t really “swim” right now because my right arm isn’t strong enough.

    So this morning, when I woke up early, I checked the pool schedule. I had half an hour before the pool first opened – a perfect time to go where it isn’t at all busy. After walking down the ramp into the pool, I was pleasantly surprised that I could move along in the pool using my arms – just not trusting going into deep water. We will see how the arm feels later, but it definitely brought the swelling down. I visibly checked before getting in, and then afterwards. It is amazing the difference it makes.

    I am reminded that I need to do more self-care – and not just swimming. After the swim, I took the dogs for a walk around the pond. It is a lovely walk where you feel like you are in a forest with all the trees around you. The smells and the sounds provide healing energy – and the dogs don’t mind the walk either!

    There is so much happening with Treehouse Village – so much critical stuff that it is easy to get swept up into the crisis of the day. If you want to see a nice story about Treehouse, CBC did a five minute piece about it. We are a resilient community who have jumped through many hurdles, so it is truly amazing to see it all come together. It is still very much a construction site, but we have conditional occupancy on three of the four residential buildings. It is a time when we are starting to feel like the end is actually in site.

    We have been so involved in it, that it is hard to step away and take a break – especially when everything feels so critical.

    But then cancer has a way of reminding you. It is weird, that I don’t have the clarity of what is important the same way I did the first time I had cancer. The first time, it was easy to just let go of things. I could let go of things that were dragging me down, and focus on things that would help me through it. I guess I don’t feel like I have as much dragging me down, such that I haven’t had that same need to just let things go.

    Last time self-care involved going for a lot of walks. This time it involves beach trips so that my dog can run, but also, time spent on my new home – painting, building drawers for the kitchen cabinets – whatever I can do to help make it be my new home. We are hoping to move in before the end of October. There is still lots of work to do to make it livable. Fortunately, we have a nice place to stay until the of the month (and another home if we need it).

    What do you do for self-care? How often do you do it?

  • The in-between space

    The in-between space

    I’m living in the in-between space and it causes me to get anxiety that I sometimes cannot control. It is the waiting time, not knowing what will happen in my short term future. Part of the challenge with that is, when you are diagnosed with cancer, your future becomes your short term future. It becomes impossible to see beyond a three month timeframe – and yet, – don’t know what that three month time frame looks like, so I can do is look from one day to the next. I cannot plan anything.

    The say the waiting is the worst – and from a mental health perspective, it is definitely one of the worst. For me the year after treatment was pretty bad from a mental health perspective, so I’m not sure if this is worst than that or not.

    I remind myself, now that I’ve had my surgery, in theory, I no longer have cancer. I’m in a state called “no evidence of disease”. Reminding myself of this does lesson some of the stress of not knowing the next steps in my treatment. I’m not eager to start treatment, and I hope to make a plan with my oncologist that lets me taper onto different things so I know which things my body is reacting negative to.

    One of my mantra’s from my first diagnosis is “I am the expert in my body”. My healthcare providers are experts in various aspects of disease and human wellbeing, but the human body is complex. I’m the one who has to live in it. I’m the one who knows how I’m reacting to different medications.

    My arm is healing pretty well. My mobility is good. I see a physical therapist tomorrow who hopefully will help me figure out what muscles need stretching and which need strengthening. I notice that some muscles are just getting extra tight from working harder than normal. A warm compress makes a big difference in calming that down. Last I checked, no significant swelling.

    While I’m in this space between, I’m hypersensitive to other people’s stress. This of course, is not great, since there are a lot of stressful things happening at Treehouse right now, with many people working to get the project finished. I am needing to be more mindful of when people are projected that on me, and asking them to step back from me. Otherwise I’m apt to break down in tears and spiral into an anxiety cycle.

    Today, if the weather holds, I’m doing to go to check out Risser’s beach with a friend. There was a lot of damage at the beach because the hurricane hit at high tide. Cali will be at daycare, so it will be just the two of us, which is good. I wouldn’t want Cali running around in unsafe places, where we know enough to stay away from them. We got really lucky during Hurricane Lee. Many of the areas around us were out of power for days (some are still out). We only had a few flickers. The Town of Bridgewater for the most part faired well. The rural areas around us not so much. But what is more devastating is the damage to all the beaches. We can hope that the beaches have mostly just moved to “winter” mode, where the sand moves into the bay and exposes the rocks that protect the dunes (that is an interesting natural phenomenon). We won’t know for sure until the sand comes back – or summer comes.

    Today’s goals are a walk on the beach and then some painting in the afternoon. Crossing fingers that sometime in that window my phone rings and I get an appointment.

    Feature image: Risser’s Beach with the sun low on the horizon – picture taken by me in April 2021.

  • Today I went for a hike

    Today I went for a hike

    My friend and I hiked around Indian Garden Farms. We have done it many times – but only once this year. We really haven’t been hiking much this year in part because the weather has been terrible, and in part because I’ve been spending most of my days painting.

    I really felt the need for some forest bathing – so the hike was just what the doctor ordered.

    I was reminded that when I first got diagnosed I started walking. I struggled with walking more than 1km without back pain. However, over the time I was doing chemo I expanded my walking endurance to over 10 km. It was a slow process, but one that was helped by having a friend to talk to while we walked.

    I realized that with all the painting, I haven’t been out walking much. I’ve been lucky to get to the beach once a week. But not just that. I used to walk Cali multiple times a day. We would walk around the pond (just over a km), and often walk the extension making it a 2km walk. We did this once or twice a day in addition to shorter walks around the block. With the extra people in the house, and with me not feeling well, I haven’t been walking her as much – and I realized today that I miss it. In my mind it was a ‘chore’ that needed doing, but in reality it is a great excuse to get out from my computer and enjoy a little break in my day (even when the weather isn’t perfect).

    And so, I’m going to try to walk more. I’m going to try and use that as a way to reconnect with my body.

    No news yet from my oncologist. I hope to hear something soon. I’m on limbo right now, unable to plan for October – not knowing if I should be cancelling a trip I have scheduled or not. I’m on pause, back in wait mode. Thankfully, when my mind starts to wonder towards the worst case scenario, Cali (my puppy) brings me back into the present. Reminding me that right now, life is pretty darn good.

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