Category: Four years and counting

The phone rang and woke me up. It was the call I had been waiting for, but also dreading. When I talked to my oncologist the week before vacation, he told me that I’d get the results the day after the PET/CT. If the results were clear, then the would be released for my viewing in the patient portal. It there was a concern, I’d get a phone call.

Then the phone rang.

It was my oncologists nurse. She asked me if I wanted the results of the PET/CT. Of course I did. I had delayed the test until after vacation, so the concerning symptoms had been reminding me constantly that the cancer might be back. For weeks I had tried to put it out of my mind – to forget about it. My oncologist said he was only a little bit worried – that if he was really worried he would have pushed me to do the PET/CT before vacation. This was a test because I had some symptoms, but he wasn’t too concerned. I tried to reminded myself of that everything my back ached which was pretty much constantly for the last month. I tried to remind myself every time I felt queasy – a feeling I had associated with liver enzyme issues. I had too many signs that the cancer had spread. I tried to not think about what it would mean if the cancer was back – how that might change my priorities and how my life might change – and yet, I didn’t have a diagnosis, so I also tried to put it out of my mind and forget about it – enjoy vacation. Escape from all the pressures of work and school.

Then the phone rang.

She told me that the PET/CT was clear. There were no signs of cancer. There was some inflammation consistent with flap reconstruction, and some degeneration in my back (consistent with arthritis). But no cancer. The cancer was not back.

I took a deep breath.

I didn’t cry. I had expected that I’d feel this great sense of relief – a sense that had happened with every other scare I had. This time, I was so convinced about it. I’m still processing the letting go – processing the idea that no, I don’t have cancer.

Now I am working on decompressing from that added stress. I’m also having to figure out what might be causing the symptoms that got me to this state in the first place. My back pain did not suddenly get better with the phone call. It is still debilitating. However, now that I know it is not cancer, I can look to treatment options. I’m going to do another injection in my back that might help relieve some of the pain. I’m going to consult with a couple of neuro surgeons. I cannot live with this pain. It has prevented me from hiking. It limits the cooking / baking I can do. It limits the amount of walking I can do. And so, I’m now looking at ways I treat the pain, and hopefully have it resolved.

I’ve had varying opinions on the heightened liver enzyme – from it is nothing, to chat with the gastroentronologist about it – as the queasiness might not actually be related, but might be a sign of something else.

Either way, it is not cancer. I did not receive a death sentence with the phone call.

The nurse said that she only calls for good news. If the news wasn’t so good, then it would have been the oncologist that made the call. I’m glad that I did not hear his voice when the phone rang.

So now I take a deep breath. I try to decompress, but then I also need to get caught up on all the work that I have missed over the last month while I was working hard trying to convince myself that I’d be OK, but also struggling not to make plans for the rest of my shortened lifespan. It causes you to take stock in what you want to do with your time – and yet, I know from my initial diagnosis that what I think I might want is likely not the same before diagnosis as afterwards. After diagnosis, your whole perspective changes. I remind myself that “in the absence of a diagnosis I am healthy”, but also that in the absence of a diagnosis there is no point in “planning” because my perspective won’t be the same.

I remind myself, the scans are clear. It is not cancer. Hopefully soon I will believe it.

For our last full day of vacation, we decided we wanted to spoil ourselves. I really wanted to spend a day at a spa or something. We were driving up the California coast past Big Sur, so I looked up “hot springs”. The first one I looked up involved a 10-mile hike and was closed due to flood damage from a couple of years ago. The 10-mile hike was a no-go anyways. Then I saw Tassajara – a Zen Monastery that allows summer day visitors and has a Japanese style hot springs baths. Sounded pretty ideal. I called and made a reservation for the following day (Friday). When I called I was warned of a 14-mile dirt road with steep downhill and 4-wheel drive recommendation. That hasn’t stopped us from trying before so it wasn’t about to stop us trying this time.

Then we set our GPS to navigate us there only to discover that in order to get there we had to drive all the way to Caramel and then loop back, because it was accessed by the upper portion of Big Sur State Park. Scott used our trusty Ultimate Campgrounds app and discovered a couple of forestry campgrounds along the road to Tassajara, so we planned on camping on one of them the night before – that would put us closer and allow us to spend more time at Tassajara before needing to leave so as not to have to drive that road in the dark. We spend a nice night at White Oaks campground in a not exactly flat space (we were on quite an angle). What struck us most was the sound of the birds when we woke up in the morning. It was blissful.

I wrote more about that aspect of our experience, and shared pictures, at our Travel blog – goingeast.ca.

When we arrived, we saw the immediate beauty of the place. Our first order of business (after checking in) was to go on a short hike. Since we decided to be without electronics, we cannot tell you how long our hike was, but we took about 45-minutes exploring. We climbed one of the hills to check out the “helicopter pad” (which was just a cleared patch on the ridge of a mountain). I was a little worried about hiking. My back has been problematic since mid-January. I have been very limited in the amount of hiking I can do, which is sad, because I loved going on 2-3 hour hikes. Fortunately, the 45-minute hike agreed with my body and I was doing fine afterwards.

After our hike we enjoyed a hearty lunch – soup, salad, bread, and dessert. I skipped the bread part, but was happy that I could still partake in the soup, salad, and dessert. I was glad to see that they are aware of various food allergies and provided alternatives to ensure that everyone was well fed.

We then decided to check out the swimming pool before heading to the baths. I found the pool to be a nice length for swimming laps and wished I had my swim snorkel and earplugs to keep the water out of her ears. I could easily see myself getting up in the morning and going for a nice 45-minute swim.

After a short swim it was time for the baths. The baths are segregated. They are listed as clothing optional, but really it was more like you were odd if you were wearing anything. They had two hot tubs at different temperatures, and a steam room. Plus, if you wanted to cool down, you could take a walk down to the creek and cool off in its cold flowing water. It was truly delightful until the biting insects came out (some kind of fly).

This is where I had a decision to make – and a big one. Do I just walk around naked like everyone else – showing my scars? I decided I didn’t care what others thought of me. I decided to not care, and went about soaking in tubs, roasting in a steam sauna, and dousing myself in a freezing cold stream all in the buff – not caring about exposing my scars … and feeling blessed that my plastic surgeon did such a good job that I felt comfortable enough with my body to be in the buff – especially when many other women I know would not feel comfortable in this situation. I did find that most of the other women there looked more like models than a middle-aged overweight cancer survivors, but who is comparing anyways. I am reminded of a yoga practice of letting go of the ego – not comparing to others as we each have our own paths … and so I enjoyed my time until I got bit by some type of fly … then it was time for me to put on some clothes and get out of there!

We had enough time to also enjoy the 1 hour orientation to zazen in the Zendo. It was interesting to learn about the rituals that were used in their particular form of Zen meditation practice. It is done in community and yet it is such an individual thing. You spend most of the time sitting facing a wall, so that you are not distracted by anyone else in the room. I enjoyed the experience but at that point my back was killing me. The heat of the baths didn’t seem to do it well – especially when followed by a lot of standing and sitting in uncomfortable positions. I didn’t feel like I understood well enough how one my deal with adaptations if one was physically unable to handle the practice as is. The person giving the orientation talked about how some aspect of the practice is painful, and learning to be with the pain – but that was more about acute pain in the moment, and not about putting oneself in a position of being in pain all day as a result of morning practice. I think I would need to talk more to a teacher (I think that is the term that is used) who had a deeper understanding of ways it could be done with a body that is not healthy or fit. In that way, I feel that yoga practice does a better job of allowing people to come as they are – but that is most likely because I just don’t understand it well enough.

We found ourselves considering a longer visit in the future. Over the summer, if they have rooms available you can rent them. We are thinking of looking into a two or three night stay sometime mid-week. There is no internet, so it would need to be time when we could both be away from work. We both felt like we could spend days exploring the different hiking trails, eating the wonderful food, meditating, and just being one with the space. The thought is so peaceful.

It was a great way to end a vacation that was filled with such a variety of experiences – almost crazily so!

I didn’t know what a swollen lymph node felt like. When I went through treatment, I didn’t have any known lymph involvement. I hadn’t really even heard of the lymphatic system before cancer. Now I am always aware of it.

First, it was lymphedema in my left arm – which caused my hand an arm to swell. My lymph system wasn’t draining properly. However, I didn’t have any swollen nodes. Just some clogging in the flow – which took 6 months of wearing compression and swimming 2-3 times per week to resolve. I’m thankful that it did resolve.

When I got back from Ontario last Friday I developed a cold. Ugg. Yet another cold. Most annoying. Add to it that it rained most of the week – which did nothing to help my mood.

Then on Wednesday night, as I was chatting with my students on a synchronous session I noticed a lump in my neck. This is first time I’ve felt a swollen lymph node that wasn’t in my glands. I often have swollen glands – but this was new. This was something I had not felt before. Of course, that doesn’t mean it hasn’t happened. Now I am hyper-tuned to my lymph nodes, so I notice when I suddenly develop a lump in my neck.

Luckily, I was already heading up to the cancer centre for a different appointment, and my surgeons physician assistant was able to fit me in. She was not at all concerned. The cold is likely the contributing factor. It will likely resolve itself. She did a thorough breast exam and validated that she felt nothing awry in my axial nodes (under arms – which is the most concerning area for breast cancer – that and the sternum and clavicle). She said they didn’t feel suspicious. If they stick around for a month or so we can follow up with an ultrasound – unless I wanted one now, but she didn’t see the need for it. I agreed to give it two weeks – and now I’m convincing myself that the lump is getting smaller and softer. I’m not sure it that is true, but I’m working on convincing myself it is.

The emotional toll seems to never stop. As much as I try to convince myself – and use my mantra – “in the absence of a diagnosis, I am health” – my mind still gets the better of me at times.

I can now say that I know what a swollen lymph node feels like, and once it goes away, I’ll be able to release any underlying stress associated with it. And next time, hopefully, it will mean just a little less stress. It seems that there is always a next time.

Feature image is a sunny day in my neighbourhood with a beautiful California Lilac in full bloom. It has nothing to do with lymph nodes, but it makes me smile.