27 Down & One More Day

I've now completed 27 sessions of radiation and have one session left. It is tomorrow at 3:45 pm. It’s hard to believe I’m almost done, although I’ve been told that the side effects worsen for the first one to two weeks after the last treatment before they start to get better.

For the most part, the side effects have been manageable. I’m tired, sore and sometimes grouchy (perhaps more than sometimes!). I have a large rectangular patch of what looks like a very bad sunburn on my chest, which I have to put cream on several times a day to hopefully prevent the skin from cracking. It itches and I have to sleep with gloves on so I won’t scratch it and damage the skin. The skin feels like dry leather and it’s bumpy as if every hair follicle is standing up in revolt of this treatment.  One more day.

One more day of going to the Cancer Agency.  Mentally, it’s a bit tough going every day to a place called the Cancer Agency and knowing that you’re a patient. It doesn’t allow you to forget that this is real and not some horrible nightmare. But, everyone I’ve met at the Agency has been really nice and compassionate.

I’m in radiation Unit A. The first time, it was impossible to find. Now, the route is familiar. I am a pro at this and I have a routine. Front entrance, elevator to 2, left, left, right, left, right, elevator to 0, check in at Unit A.

I am robe 889. It is hanging in a cloth bag on a brown hanger on the lower rack, in the middle. I hang it in the same place on the same hanger every day. At first, it was to make my robe easier to find, but now it is a part of my routine.

Last week, I checked in to Unit A at the same time as another woman. She showed them her appointment card and I thought, ‘Aha! A newbie’. You really only need to drop off your appointment card on Fridays, so that they can write in your appointment times for the following week.

We arrived at the change rooms at the same time. My competitive nature surfaced – I will be the best cancer slayer. Today, that means I will be the fastest to change into my robe. Mission accomplished - I was triumphant in my imaginary race.

After changing, it’s time to sit in the waiting room. Sometimes, I don’t have to wait at all and I rarely have to wait for long, which is great because the waiting room is my least favourite part. Before changing into my robe, I imagine that other people think I work at the Agency. I look a lot more like the doctors who treat me than I look like the other patients, who are most often decades older than me.

But, in my robe, I’m clearly a patient. The robe is a thin cotton cloth wrap. It does nothing to hide my flat chest and I try to cover up as much as I can.  In the waiting room, I feel the others, mostly seniors, looking at me. I imagine that I am their feel-better comparison, that they think: ‘That poor young woman, at least I made it to 50, 60 or 70 years old, before cancer struck me’. I look back at them and think: ‘You’re right, I am far too young for this. How the hell did this happen?’ I have yet to see anyone younger than me in the waiting room. One more day.

The radiation therapist calls my name and I am thankful my time in the waiting room is over. The radiation therapists at the Cancer Agency are fantastic. They are kind, caring, gentle and respectful. They also offer me a warm blanket every day for my treatment. Regardless of the situation, I never say no to a warm blanket.

The linear accelerator (a.k.a., radiation machine) looks a little like a really large KitchenAid mixer. I’ve always liked baking, but I’ve learned through my radiation treatments that it’s much nicer to be the baker than the bakee!

I lie down on the ‘bed’ with my arms above my head and my chest exposed. The therapists maneuver me until I am perfectly lined up with the plan designed by my radiation oncologist. 

With only one day left, my area of treatment is obvious – my red rectangle – but, in the beginning it wasn’t so easy. To help line me up in the exact same way every day, I was given two tiny tattoos before treatment began. They are just tiny little blue dots, but they are still tattoos, which means I’m badass now.

About halfway through my treatments, I had a student who was very aggressive when trying to line me up. It was painful, but more than that it was the first time through this whole experience I had ever felt uncomfortable and sensitive about someone touching my chest. It left me in tears and I gave some feedback to the trainer.

That experience made me realize how lucky I’ve been with all of my doctors at the Cancer Agency. I had thought that I had lost all modesty and just didn’t mind being touched and examined, but this experience showed me that it’s actually the skill and training of the doctors and therapists that put me at ease and made me feel comfortable.

On alternate days, I have to wear a ‘bolus’ over the area to be treated. It’s a clear plastic rubbery material that increases the radiation to the skin. Since I had Paget’s, which is a cancer of the nipple, my oncologist wants to make sure that nothing malignant is left in the skin or scar. I see my oncologist every week. Last week, she said I didn’t need the bolus anymore. Apparently, my skin has reacted enough.

Once I’m all lined up in the machine, the therapists leave the room and watch me on their television monitors. I am the star on the most boring tv show imaginable. Through an intercom, they ask me to take a deep breath and hold it. The expansion of my lungs push my heart farther away from the radiation field and that's a good thing. The radiation lasts about 5 seconds and then I’m allowed to exhale. The machine rotates and we repeat, except this time the radiation comes from the side instead of the top. The baking is now done for the day.

I wish the therapists a good day and hurry to the change room where I quickly change back into my regular clothes and put my robe back in bag 889. However, today, my brown hanger wasn’t waiting for me on the middle of the lower rack.  Somebody else had used it! Suspecting a newbie as this had never happened before, my suspicions were confirmed when I spotted my hanger on the end of the lower rack with a newbie’s bag. I knew it was a newbie as the last day of treatment is shown on the outside of the bag. I quickly righted the situation by taking the brown hanger for myself and giving the newbie a lovely white hanger.  I allow myself this little bit of crazy. I just need the brown hanger for one more day, then the newbie can have it.

I try to avoid looking at anyone when I pass through the waiting room on my way out. I exit the Cancer Agency and breathe deeply, elated that I’m done another day. One more day.

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. 

A Funny Thing Happened on the Way to the Hospital

Happy New Year! I hope 2012 brings us all health and joy (and perhaps two new boobs for me)!

Ok, it’s been awhile, but I’m back in the saddle and I’ve got lots of updating to do. So, let’s go back in time to just after my surgery…

With me out of the hospital, super hubby Pascal had two patients to look after – me and Zeus, one of our two little dogs who was recovering from an eye infection. Pretty manageable, or so we thought.

Shortly after my last blog post, having enjoyed my super yummy dinner and basking in my time outside of the compression bandages, I started having pain and swelling in my abdomen. I called 8-1-1, just like 9-1-1 but for medical non-emergencies, to speak with a nurse, and she said that since I was only one day post-surgery, I should go to Emergency and get checked out. This was at 11 pm, when I was much more ready to head to bed than back to the hospital.

We let the dogs out to do their business in the yard when Pascal noticed that Zena, our other precious pooch, seemed to be having trouble doing what dogs do in a yard. He also recalled that she had a stomach ache the day before. Putting two and two together, he quickly surmised that she might have a ‘blockage’.  Yikes – sounds serious! Nurse Pascal was now at three patients.

We all piled into the car and Pascal, in a rather stressed voice said: “ok, I’m going to drop you off at St. Paul’s Emergency and then take Zena to the 24 hour Animal Hospital”.

While discussing who would be getting dropped off at the hospital (Zena!) and who would have Pascal accompany them (me!), we started en route. On Kingsway, I recalled that Pascal’s parents had taken our dogs for a walk earlier that day. Maybe they could shed some light on Patient #3.

11:30 pm PST – The Strangest Conversation Ever - translated from French

Pascal: "Mom, I don’t have time to tell you why, but I need to know if Zena pooped on the walk today."

Pascal’s Mom: "Yes, she did."

Pascal: "Excellent news, thanks! Bye!"

So Zena didn’t have a blockage; we figured it was a return of her back problem and Patient #2 (me!) again became the focus. Arriving at St. Paul’s (Mount St. Jo’s ER closes at 8pm), the car and the doggies were left in the parkade and I went to Admitting.

Any time I’ve been to an ER previously, it’s always been a long wait. Now, I know the secret to a quick entrance - arrive wearing your pajamas and looking like hell, one day post- double mastectomy and complaining of abdomen pain and swelling. I was admitted immediately.

By this time, I was exhausted and close to falling asleep on the stretcher I had been assigned. Poor Pascal was not. He was on high alert, monitoring my breathing and trying to keep me awake. He was worried that I had internal bleeding and might slip away before the doctor even arrived.

The doctor, however, was able to allay all our fears. The abdominal pain and swelling was from the hematoma I had suffered on the right side. The fluid was tracking down from the site of the operation to the abdomen and would eventually be reabsorbed. In the meantime, it looked a bit like my right boob had migrated from my chest to my abdomen.

That problem solved, we headed back home for a night of well-deserved rest.

The next day the focus was back on Patient #3 (Zena). She seemed to be doing a bit better, so we crossed our fingers, hoped for the best and asked the doggies if “they could please keep it together while we get through some tough stuff”.

Later that day, Zena’s pain returned and Pascal took her to the vet. While they were gone, I cuddled with Zeus (a.k.a., Patient #1). While petting him, I noticed he had some oddly shaped dirt on his back. After some research, I discovered this patch of oddly shaped dirt was actually flea (ahem) poop. Yuck! So much for the doggies holding it together!

When Pascal and Zena returned with her pain killers and muscle relaxant for her sprained back, I told Pascal the bad news. Patient #1 has a secondary infection – fleas!

Pascal spent the rest of the day washing, clipping and flea treating the dogs, washing and cleaning the entire house, throwing out doggie beds and toys and shopping for new doggie beds and toys. It was not a good day, but the house and dogs sure were clean!

Another day, another night of well-deserved rest. Hopefully, Pascal’s three patients wouldn’t give him any more problems!