Category: Here we go again

I’m mostly in denial at the moment – in some ways feeling the “impostor syndrome” that I felt before I had my initial diagnosis.

I know there is something, but part of me is still thinking that just maybe, the biopsy will come back saying we made a mistake and there isn’t any cancer. It is an unlikely outcome and a form of denial. It best describes how my mental mood is right now. I’m feeling like it all isn’t real.

I have another couple of weeks to wait before I’ll have any idea of treatment plans. First I’m waiting on the biopsy results. I hope to have at least preliminary results this week. I’m told that they can do the hormone receptor testing in Kentville, where they sent the sample, but they will need to send it off to Halifax for additional testing (HER2 testing happens there).

My family doctor isn’t completely convinced it is breast cancer. What triggered the whole thing was a blood test that is more of an indicator of a lymphoma. But the surgeon immediately assumed a local recurrence of breast cancer. That is the most likely outcome.

But, I also have a mantra that I’ve used over the last 8 years – “in the absence of a diagnosis, you are healthy”, and in many ways, that is what I’m feeling. I don’t have a diagnosis, so I’m mostly healthy.

I still have a drain. I see the surgeon again tomorrow and hope that it can come out. We are getting close to the time where the risk of infection is higher than the need for drainage.

I went out to Mahone Bay – to Oh My Cod – with a friend yesterday. They make the best gluten free lobster poutine! I’ve been craving it for a while now, so I figured I’d make that my outing for the day. After a lovely lunch, while getting back into the car I tripped on the curb and fell. It was one of the awkward slow motion moments. I had one hand on my leftover poutine, and the other hand on the car door. I’m not exactly sure how I managed to lose my balance, but I started falling backwards, and the hand holding the car door and stabilizing me was my surgical side – so I had to let go. Fortunately, I seem to be fine today. It looks like I might have tugged the drain a little, but nothing problematic. For the most part, I’m not even sore.

I’m looking forward to having the drain gone, and perhaps getting back into some activity. I’ll still need to be careful, but I’ll be able to do a lot more soon. I just need to remember that my body is still healing, so I will tire easily.

Tomorrow will be a bit of a big day. After my surgeon’s appointment, my plan is to go to Costco with my friend (and maybe the Asian food store nearby). Fortunately, she will do all the lifting for me. She will also do all the driving.

Late last week I decided I could drive to the beach (about a half hour). I was fine doing the driving there and back – but the next day I was in crazy pain. It was way too much. I’m not quite ready to take on driving again, but I’m happy to be a passenger – especially cause her car has great seats that feel like I’m been hugged. I feel more like I can relax.

And so, I’m mostly living in a world of denial while I wait for word of a diagnosis. Wednesday will be two weeks since surgery, so the information could filter in at any point.

Surgery happened yesterday (Wednesday). I’m doing remarkably well today.

The surgery was more involved than I anticipated. I had been thinking of it as similar to a sentinel node dissection, but it was closer to a lumpectomy. What do I mean by that? The incision was bigger (she went in the original incision but had to add about an inch). She had to extract the cancerous nodes without clipping the nerves, and I was sent home with a drain until Tuesday. Ugg.

The surgery almost didn’t happen because I went in with a bit of a cold. The anesthesiologist was concerned – but because it was a cancer surgery we agreed to go ahead. I was doing my best to convince him as I really didn’t want to wait any longer! In the end, it went well and the only issue I’ve had is an extra sore throat – which was nicely controlled by the pain meds they gave me for my arm. I used the narcotics last night, but realised that my arm isn’t that sore and I can control my throat with regular tylenol, so I went that route this morning and am still good several hours later (yay).

I asked the surgery how big the tumor was, and she comments that it was more than one lymph node, around 1 cm. So the ultrasound scan that showed a 2 cm mass, was actually a clump of smaller masses. I have no idea if that is good or bad – smaller is better, but more is worse.

During the night last night I noticed that I had some swelling in my upper arm – which was to be expected. I put on a compression sleeve for about 8 hours (until it was driving me nuts), and that seems to have brought the swelling down. I’m glad to have the compression sleeves so that this was an option.

Another interesting thing is that they have a nurse coming to my house to change the dressings and checkin on me. This is new for us, as in the US they taught my hubby how to change the dressings and we did it all ourselves. This means I haven’t seen the incision yet. When the nurse comes later this afternoon I hope to get a few pictures for my surgery photo gallery (yes, we are nerds that way).

I now get to wait a couple of weeks for pathology to come back. I am very curious to learn about the grade and hormone receptor status. I’m expecting ER/PR+ as I was hormone positive before. I learned that they send the sample first to Kentville where they do the initial pathology – and where they can do the hormone receptor testing. Then they send it to Halifax for the Her2 testing. It takes 2-3 weeks. I’m hoping to get interim reports as they come in. I’ll be talking to my family doctor about a test result communication strategy on Wednesday.

What else is different is that I have a whole community of support around me. We are sharing our house with another family who are doing the main cooking and providing other critical support like walking my puppy when neither myself of my hubby (who has a bad cold) can. Other members of our community are helping with delivering our market veggies and mowing the lawn (which desperately needed it, and was on my to do list).

I’m back to a wait cycle. I’m not to lift things with my right arm – but I can and need to move the arm just not above my elbow height. The regular movement is to help avoid getting a frozen shoulder – which no one wants! I’ll be away from painting for a few weeks, as it involves too much lifting of buckets and climbing of ladders. During the time off, I’ll be spending more time visiting beaches if the tides are right and maybe doing some of the computer work I’ve been neglecting over the last month. Right now my focus is on healing. I’m mentally preparing for radiation in mid-September.

My anxiety levels are starting to increase, and will likely ratchet up during the week. One thing that is causing me the increase in anxiety is the lack of information coming from my surgeon’s office. I don’t feel like they have a whole lot of empathy for what I might be going through. There are some assumptions that seem to happen in this system – one of which is that the “other” doctor will share results. The surgeon’s office sat on my bone scan results for 2 days. That may not seem like a lot, but as the patient it is literally life or death – that is, me contemplating whether or not this cancer recurrence is terminal or not. It is so very frustrating.

Hubby and I spent the weekend at the Lunenburg Folk Harbour Festival. It is actually only a 25 minute drive, so we were not staying there – although, as I said last year, I wish I was! The artists were AMAZING. I continue to be impressed with the talent of the local artists, and the quality of the festivals here. Of course, there was not just local talent but also some international talent that really resonated.

The most influential for me was Holly Near. We were not familiar with her name (bad on us), but we were familiar with a bunch of her music, as we sang her songs in the Unitarian Church (thanks Jane). One thing that made her more influential was that she shared her story as a recent cancer survivor. To be go through the extreme lows of treatment only last year, and then pulling herself up and getting back on stage was truly inspiring. It really helped me think that if she can do this at 72, I can do this at 52. And her health journey was definitely more traumatic than what this recurrence is apt to be. Her music inspires me (love the song Hattie and Mattie and the second time she sang Singing for our lives, I bawled my eyes out. I stood there swaying, holding and being held by my hubby crying. It was what I needed.

Another surprise this year what Heather Mae. She is the partner of, and touring with Crys Matthews, but also an amazingly talented singer-songwriter. They are definitely a power duo on the folk scene. Just watching them sing love ballads to one another brings tears of joy to my eyes.

On the more local front (and yet they are touring in Europe) were Madison Violet. They are a seriously powerful duo. I could not get enough of them. Lisa MacIsaac is an amazing fiddle player, and when the two of them (Lisa and Brenley MacEachern) belt out a song, their voices are just amazing.

Other artists really enjoyed include: Terry Spenser, Ben Caplan, The Gilberts, David Myles … and pretty much everyone I listened to! I have started an iTunes playlist with artists from the concert.

Yesterday was a day of breakdowns. It started with a phone call from my family doctor’s nurse. She was giving me an update on something totally unrelated to cancer, but all I wanted was the results of my bone scan. She confirmed that the results were in but could not give them to me until the doctor saw them and he was on vacation until Monday. I broke down. There was no way I was going to wait another several days with no information. Knowing that the information was there, but not having access to it was more than I could handle. Three weeks of stress cracked, and the tears started flowing.

Then just as I was leaving a physio appointment, I ran into my friend who happens to also be a family doctor in that clinic. I hate asking her for favours that involve her work. I like to keep our relations on the friend level and try to respect boundaries. Upon seeing her, I broke out into tears and explained what what happening. She gave me a hug and said she would find out who was covering for my doctor and get me an answer that day. I went home waiting for the phone call.

After lunch, I went back to site to continue painting – I’m painting the ceilings in my unit – which is so exciting after painting ceilings and walls in so many other units – my new home is finally at that stage of readiness. As I was setting up, I got the call. It was the nurse again. She confirmed that the results of the bone scan showed “no evidence of metastatic disease”. That is how they say it was clear! YAY.

I immediately began to cry. I had no idea how afraid I was. I had no idea how much emotion I had been suppressing. I went over to share the news with some of my new neighbours and friends. There were lots of hugs and lots of crying. So much emotional support. Exactly what I needed. What a relief.

Every time I told someone I cried. I was reminded of the emotional toll that happens when I share cancer news. I remember how it is not just me that is experiencing it, but also the people I share it with. That can be both supportive but also emotionally draining. I need to figure out ways to share news without too much draining of my emotions. It is hard to explain, but it is a different kind of tax on the system.

But the journey isn’t over. I still don’t have surgery date. I am expecting that today – but then, I have been expecting it for several days. With the scan results, I am expecting that it will be an excisional biopsy – where they remove all the lymph nodes in the right axilla. Then they will do a full biopsy to figure out the specific pathology of the cancer and stage it. All I have for staging now is that they are treating it as a “local recurrence”.

At a minimum I can expect radiation and some form of endocrine (hormone) therapy – unless the cancer mutated so much that it is no longer hormone positive. There may also be chemotherapy. I don’t know. I won’t know until I can talk to my oncologist, which won’t happen until the pathology results come in.

There are some frustrations in the Canadian system. Unlike the US, as a patient, I don’t own my own medical records. I don’t have a “right” to them. I am extra thankful to have a family doctor, as they are the gateway into information. If my family doctor wasn’t on vacation, he would have called me the moment the results came in (or pretty close to it). I am lucky to have that level of support as over 10% of the people in this province don’t have a family doctor. If I didn’t have a family doctor, this cancer likely would not have been found in the first place. I am so very lucky and yet the system is still very frustrating.

And now that I’m not thinking about how I might be dying, I’m going to finish painting my ceilings this afternoon then head out to the Folk Harbour Festival in Lunenburg. I had such a great time last year, and a great time at Stan Fest. I’m very much looking forward to a weekend of great music.

I woke up on early Saturday morning from a stress dream. I dreamed about learning more about the surgery and it not being what I expected. What I remember most from the dream was that I was expecting a 2-hour surgery and they said it was going to be a 9-hour surgery. Upon waking, I realized I don’t have any real information about my upcoming surgery. I’m going on my experience from the past which was 9 years ago in a completely different healthcare system. It made me realize that I needed to call my surgeon’s office and find out when I can expect to get more information. 

What I do know is that they will do a surgery to remove the lymph nodes in my right axilla (underarm) – I believe this is called a lymph node dissection, but it is also called an excisional biopsy – that is, it is a biopsy that is done by removing the entire offending area/node, rather than just a core sample. During my original first surgery in 2014, they would have removed all the lymph nodes if they had determined there was any cancer in the sentinel node – there was not. 

In the background of all this anxiety was the excitement of the first households moving into Treehouse Village Ecohousing. Saturday night we had a BBQ onsite to celebrate. This was a truly momentous occasion. It is amazing to see the vision of Treehouse start to come true. 

Sunday morning I decided that I just needed a break. Anxiety was getting the better of me. I reached out to a friend and figured out what I wanted to do. We ended up taking a bit of a road trip over to “the valley” (referring to the Annapolis Valley on the Fundy Coast – about an hours drive). The uPick we were headed to wasn’t open, so we found another farm market to visit. We had a lovely snack, and tried some of their ciders. We even got to uPick – not veggies or fruits, but sunflowers.

Amusingly, when we got back to Bridgewater, we headed to our local farm and did uPick raspberries and blueberries. It was the break I needed. 

I called Monday morning but didn’t hear back. I called again today (Tuesday) and spoke with the doctor’s assistant. She said that she didn’t have any information yet, but was going to see the doctor later in the day and would get an update. I was able to ask her a few more general questions which was helpful. I now know that the doctor schedules surgeries for Wednesday’s and generally you find out a week before. So I will likely find out more on Thursday or Friday. 

Late this afternoon I got a call about the bone scan. It will be Thursday in Bridgewater. I’m glad I don’t need to drive for it. The way the scan works is that you go in the morning and they inject you with the isotope and then tell you when to come back for the scan – which will be later that afternoon. I expect that the results will be available pretty quickly. I don’t know if the surgeon will wait for the results before calling me about my surgery or not. I hope to have more information before the long weekend.

In the meantime, I’m trying to not let anxiety get the best of me. It isn’t stress – it isn’t the same feeling. When the anxiety is at it worst I am unable to focus on anything. I actually showed up on site early Friday morning totally anxious and fortunately there was someone there who could tell me what one thing I should do – as I couldn’t figure out which of the many things I could do was most important at that time, such that I was not getting anything done. 

I think, when I look back, this diagnosis is scarier than the first one. With the first one, I could approach it with a sense of curiosity – I don’t have that coping mechanism available to me this time!

I met with the local surgeon for my first consult. I wasn’t sure what kind of biopsy we would be doing. She informed me that we are treating this like a local recurrence of breast cancer. That is most likely what we are dealing with, so the initial treatment plan is based on that.

In the next couple of weeks I will have a bone scan to ensure that there is no cancer in my bones (which would indicate bone metastasis, and change things to stage 4). In addition, there will be a surgery to remove my axilla lymph nodes. This is what they would have done had they found cancer in my lymph nodes when I had my initial cancer diagnosis. It will likely mean some form of chemotherapy and radiation therapy. Ugg!

I now to get learn another medical system – the cancer system in Nova Scotia. Since they are assuming it is breast cancer, everything will be forwarded to my existing oncologist, who I like. I haven’t seen him in person since shortly after arriving in Nova Scotia, as all my follow up appointments have been over the phone. I’m curious to see if the next appointment will be by phone and when it will be scheduled.

The surgeon commented that she needed to meet with the radiologist and would review my CT scans together later this afternoon. That would allow her to figure out her surgical plan. I expect to hear from her office soon. In the meantime, I’m thinking of it as a local recurrence and figuring out what all that means.

What I can expect with a local recurrence is radiation because it is in my lymph node. This would happen in Halifax. And a switch up in endocrine therapy, as the 5mg of Tamoxifen clearly didn’t work. Fortunately, there are several options on that front. There might need to be more chemotherapy (yuck). One thing that I didn’t have with my previous cancer was an oncotype nor a mammaprint. I’m now wondering what types of genetic scans are available in Canada that might help inform the next path for treatment.

And so now, I wait. I’m planning to keep myself busy painting and visiting the ocean – both things I enjoy doing.

I am surprised at how calm I am – how I’m not totally stressed out or in panic mode. It is so different from the last time.

I found out on Thursday that the swollen lymph node in my right axilla is cancer. We don’t know yet what type of cancer, we just know that it is malignant. I will have a consult with the local surgeon on Thursday to talk about the next steps. It will be a biopsy of some kind – just not sure if it will be a needle biopsy or a full excision (where they remove the offending lymph node).

I was lucky to have the weekend at StanFest – a folk festival up in Canso, Nova Scotia. It meant that Scott and I were on our own, and I could think. I could also control the messages I was sending out – informing people that I felt needed to know or should know, without feeling like I had to talk to anybody about it. It meant I could send a text with some information and then let them process it before we talked about it (if we talked about it). That way, I didn’t need to deal with the awkwardness of telling people that I have cancer again! But also that I don’t know yet what kind of cancer or what I’m dealing with from a treatment perspective.

My thoughts have been about what the results might show: (1) breast cancer, or (2) lymphoma. If it is breast cancer, then the next step would be to determine if it is anywhere else in my body. If it is limited to just my right axilla, then as I understand it, it is not considered stage 4. This would be considered “locally advanced” as it has spread from the breast but only to the first set of lymph nodes, which were not removed nine years ago when I had my first treatment.

One of the challenges this presents me is that it is in my right arm. My right arm is where I have been getting all my injections and IVs since I had lymphedema in my left arm. I’m complicated.

All that to say, what is surprising me is how calm I am about the whole thing. For the most part, I am sleeping through the night. I’m working hard during the day, with painting at Treehouse Village, exercise, and playing with my puppy. I know that there is very little point in doing any research yet, as I don’t know what I’m dealing with. I did ask a friend about treatments and what the current least sucky option is. I’m told that abemaciclib is something that is currently being used – and I validated that it is available in Canada.

No matter what it is, it is going to suck. What is not going to suck is that we are living in a place where we have a lot of community support – unlike the last time when we were mostly alone. Here we have our Treehouse Family – some of whom are currently living in our house while we wait for their unit to be ready for them. It has been so nice to not be alone and have the support of other adults in the house – and the fun of a child too. My puppy and the one-year-old in the house are so cute together – and I’m so happy that they play well together. Being part of this community also means that my hubby also has support – something he didn’t have when I was initially diagnosed in California.

Another thing that I’m grateful for is that I don’t have to have a Facetime call to tell my mother that I have cancer again. It was one of the hardest things I had to do the first time around. Since then, I’ve lost both of my parents. That is sad, but at least I don’t have to tell them that I’m sick because that just sucks.

I’m thinking now about the things I want to be doing with my time. I have paid attention to that ever since my first diagnosis. This time, I ask myself, what am I doing right now that I want to be doing? What I don’t want to be doing? I enjoy painting and fixing drywall and being part of the construction team at Treehouse. That feels really rewarding; however, it is also taking too much of my time. I need to find time to get back to the beach. I would spend more time swimming in lakes and the ocean if I could. Unfortunately, the exceedingly heavy rains have made the local lakes unsafe for swimming, and the ocean isn’t always an option either (it depends on tides, but also on wind direction and recent weather, as the storms can make the water murky and not great to be in). The water is abnormally warm for this time of year – it feels like swimming in the tropics! It is rather concerning.

For now, I’m calm and trying to be patient … better to spend the day enjoying myself and not being a cancer patient yet. That can wait until I know more. I’m not in a rush to take on that identity yet.