The Worst of the Best

By the Friday after my surgery, things started to calm down. Our doggies finally got their act together and managed to go a whole day without needing a trip to the vet. I was still having abdominal pain, but we weren’t worried about it anymore after our visit to St. Paul’s. All in all, things were looking up.

Overall, the pain from the surgery was less than I expected. This was because I hadn’t anticipated that the surgery would sever all of the nerves on my chest and I would be left with almost no feeling. I have heard from some women that feeling has returned in some cases, but for now, you could set me on fire and I’d have no idea.

While the pain on my chest was less than expected, the pain I experienced from wearing the compression bandages was awful and definitely the worst part of that first week. If I hadn’t developed a hematoma on my right side, I would have been spared the compression bandage. However, with the hematoma, my options were compression bandage or a second surgery to drain the blood. Sign me up for the compression bandage!

Wearing the compression bandage, I developed muscle spasms in my back and in all the little muscles between my ribs as I struggled to breathe normally. I was allowed out of the compression bandage twice a day for about 45 minutes. Those 90 minutes a day were pure heaven – I could breathe again. It was really back to basics - I was beside myself with gratitude for the ability to take a deep breath.

Though I couldn’t feel most of my chest, I could feel pain on the perimeter of the surgical site and the compression bandage put a lot of pressure on that whole area.  I really hated that compression bandage!

Squeamish Alert! The next three paragraphs may not be for the faint of stomach!

The second worst part of that first week was the drains. I had a piece of flexible plastic tubing nearly a foot long underneath my skin on both sides of my chest. The tubing was dotted with holes to collect fluid. Where the tubing exited my skin, it became solid and the fluid drained into plastic collection ‘grenades’ that were pinned to my clothes. These grenades had to be drained a couple of times a day and the exterior tubing also had to be regularly ‘milked’ to ensure no clots built up inside, preventing drainage. I’m not squeamish, but I found the drained fluid to be quite gross and smelly.

To save me from what he could of this experience, Pascal usually did the milking and draining. I would close my eyes, plug my nose and we would sing Christmas carols so that I wouldn’t have to hear the gurgling. We now have quite the repertoire and are considering a career change (kidding  - we sound better than gurgling, but that’s about it!).

I mentioned the smell to my breast surgeon and she surprised me by saying: ‘that’s what people smell like on the inside’. It had never crossed my mind that we have a smell on the inside. As it turns out, we smell rather icky; I guess a surgeon would know.

Over the course of the first week, the fluid draining from my left side lessened and gradually lightened in colour from red to about the colour of apple juice. Each day, Pascal and I would measure the amount of drainage and document it on my chart to show the home nurse. One week out from surgery, the fluid draining from my left side had reduced enough that the drain was removed – hurray!!!

It was such a relief to have the drain removed. I think it was on top of a nerve that give me a little shock every time I breathed in. The right side drain would have to stay in longer to allow the hematoma to drain out.

Going into the surgery, I knew that my prognosis and any further treatment would depend on what was discovered when they analysed my recently departed boobies. The analysis would be documented on a pathology report and I had been told that this would take two to three weeks. Knowing this, I tried my best to put it out of mind completely that first week and just focus on getting through each day.

However, about a week after my surgery, my nurse navigator called wanting to schedule an appointment for me with my breast surgeon. She said that my path report was back. My heart started racing, I started sweating and I felt a bit faint. I hadn’t expected it so soon. This was the moment of truth, when we would find out if we got all the cancer out, if it had spread to my lymph nodes, if it was invasive, if, if, if…

I was barely able to sputter out the words “the lymph nodes, were they negative?” I don’t remember wanting anything more desperately in my life. My prognosis, chemo, everything hung in the balance. This was the difference between catching it early and maybe catching it too late. This could change my delay in going to a doctor for the rash on my nipple from the biggest, costliest mistake of my life to moot. I could feel the blood racing around my head as my nurse navigator struggled to find the answer to the most important question in my life, my world.  Please, please, please, let it be negative.

Finally, after what seemed like a lifetime she said: ‘it’s negative’. I wept with joy, not even waiting to get off the phone. I yelled to Pascal, to the house, to the universe: ‘it’s negative, the lymph node is negative!’ and continued weeping, releasing four and half months of worry and stress at levels I had never experienced before. I’m weeping now as I write this and I hope that I never again feel such desperation.

A couple of days later, I met with the surgeon to review the path report and check on my healing. She was pleased with the left side, which was healing very nicely, but we were still waiting for the hematoma on the right side to drain.

Going over the path report, we confirmed what the nurse navigator had told us – the lymph node was negative. The surgeon had previously told me that three lymph nodes were removed, but it turned out to only be one and that one lymph node was a cancer-free rock star. If I could have had it framed, I would have, but my once perfect breasts and lymph node are now the property of the BC Cancer Agency.

The path report went on to say that the cancer was large – 9 cm and the margin with my chest wall was 0.1 mm. Yikes! Those are numbers I didn’t want to see. On the good side, the pathologist didn’t find any evidence of the cancer being invasive. That’s a big plus. So, two good results, two bad, but the two good results were the really important ones, so that’s another win for the slayer!

The results of the path report were a bit unexpected. It was much larger and closer to my chest wall than we had thought prior to surgery. What did all this mean? Well, it didn’t change the fact that I had the ‘best’ kind of cancer, if you’re going to get breast cancer. It was all non-invasive (ductal carcinoma in situ – dcis) and hadn’t spread to my lymph nodes, but within that category of ‘best’ I was at the worst side of the spectrum because of the large size and the frighteningly close margin with my chest wall.

We were also surprised to learn from the path report that my right breast had pre-cancer, even though nothing had been detected on the MRI or the mammogram.  If I ever had any doubt about going for the prophylactic mastectomy on the right side, this certainly erased it!

With the path report in hand, I was ready to meet with a radiation oncologist to determine if further treatment was necessary. But first, I asked for a second pathologist to review my tissue. People make mistakes and this was one analysis that required complete accuracy. I wanted to know for sure that no mistakes were made and we knew exactly what we were dealing with before making any further decisions.

The second path report confirmed the findings of the first. I had the worst of the best and I wondered if this would mean I would need further treatment.