Whew! Surgery is finished, healing has begun

Hi there. This will be a short post—low energy and aches and pains and discomfort—finally that word has real meaning for me. Everything, from my breasts, to my lungs, to my armpit to my back pulls and aches, my side is wet, the skin all around and under my right arm is numb, in short—discomfort.

The day before my surgery I got a wonderful letter from a friend with some personal tips from her experience with breast surgery, and one of her points was the I would use every pillow in the house. I took this as a sign to go buy more pillows, so Tessa and I went to Target and found two beautiful white-on-white heavily beaded bolster pillows, $29.99 each, marked down to $10! Score! Then, at the checkout, we struck up a convo with the woman behind us in line (she complimented Tessa on her dress and her whole “look”) and it ended up with the woman praying on me and blessing me and tomorrow’s surgery! It was more than I bargained for, and I was grateful for it.

That night there was parent and new Grade 9 student 1.5-hour presentation at Luka’s new school, and since it was the eve of my surgery, I intended to blow it off, but after watching Luka at his gymnastics class I had pangs of responsibility to get him the best start at his new school, so we went there after gymnastics. I got to bed by 2, and had a quick, nervous sleep.

Thursday morning we were at the hospital at 6 a.m. with my man, Tessa and Luka, on the table at 7:50 a.m., first surgical patient of the day. Apparently the procedures took two hours more than planned, but I didn’t care because I was unconscious. My oncology surgeon and plastic surgeon both visited me in my room that night, and again in the morning. I was home by noon on Friday.

My sister Heidi came up Friday afternoon (with homemade Thai dinner, THANK YOU) to help get ready for our Yard Sale for the Cure benefitting the Canadian Breast Cancer Association on Saturday the 24 (it’s the same day across Canada, just lousy timing for my surgery and the sale). She brought great posters and a banner, and she and Tessa priced stuff all Friday night. I helped get everyone up bright and early Saturday morning, went out to the garage for a bit, but then went to bed. Tessa and Heidi worked their butts off, Luka and even Graydon pitched in. We didn’t make a lot of money, but our local Goodwill scored with everything that didn’t sell.

The first four or five days after surgery were pretty much a blur of sleeping and dozing and taking pills for pain. My chest and arm and armpit hurt like crazy. Sleeping was easier than being awake. My man stayed for a few days, Tessa was in charge of food and everything, basically. We’ve eaten up my frozen homemade meals, a delicious almost-vegetarian lasagne made by Chris, a friend at work (THANK YOU CHRIS!!), and Tessa made a big soup tonight. A friend from my magazine days, and the woman who was at Women’s College with me when I delivered Luka—Meredith—sent me a wonderful funny retro card and said if she were here she would make me dinner. Unfortunately, she’s living in Vancouver now, but she came to the dinner rescue by sending a gift card to the Milestones-Kelsey’s-Swiss Chalet group, and said all I have to do is dial the phone. THANK YOU MEREDITH!!

So that’s it. If you were wondering what you could do to help when you heard about my diagnosis, and I said, “Wait until I have that surgery, then I’ll need the help,” well, now’s the time. My energy and range of motion and abilities to do the meals is non-existent, so if you can, a meal of any kind would be hugely appreciated. 

One last medical bit—I have a drain from my right armpit (axilla, to be medically accurate) which was working great until yesterday when I started leaking from where it goes into my body. I called the hospital instead of my CCAC nurse and the NP said come in. I did, my surgeon looked at it, and it’s all OK, no swelling, no infection, just leaking, and since the nurse will remove the drain probably tomorrow, it’s no problem.

Good night for now. 

 

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Surgery and date set!

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This is a long post, so apologies in advance. I spoke to the surgeons’ assistant yesterday, and I have my surgery date—May 22, next Thursday, six days from now. On Tuesday of this week I spent almost seven hours at St. Mike’s and saw my surgeon, the director of the breast centre, my plastic surgeon and my oncologist. I went in absolutely wired because I didn’t have a plan. For 16 weeks of chemo, I thought I was getting a lumpectomy, then was told no, bilateral mastectomy 110%. That started five weeks of agony, anxiety, terrible dreams, depression, crying and frenzied research online, on triple negative breast cancer forums, on breast cancer forums, anywhere I could find info. After a week I was just reading and rereading the same articles. I couldn’t absorb any more.

There isn’t much out there for women triple negative breast cancer with no primary tumour. No primary site for breast cancer is rare—statistics from a 2012 multi-centre study in the journal Cancer looked at 770,030 breast cancer patients, and 750 had no primary site. Of the 750 they studied, there was no distinction of patients with triple negative breast cancer, so that study means nothing to my situation. Triple negative is 15% of all diagnosed breast cancers. That’s the biggest problem—the subset of triple negative with no primary is infinitesimally small, so there are no studies. 

No primary tumour means there’s no target for surgery or radiation. The emotional response is bilateral mastectomy—get them the hell off me. When I finally got my diagnosis of TNBC (triple negative breast cancer), chemo was started immediately. No one asked me “What do you think of paclitaxel? How does some cyclophosphamide sound? Would you like to schedule that every three weeks, or does dose-dense suit you better?” No, my onc said this is the drill, the pharmacist sat with me and explained, the dietician told me what foods to avoid. That was fine by me.

Then after chemo was finished, it was “Ah, here are your options, it’s your decision.”

What? My decision? I don’t want this decision. Some women do want it, but I don’t. I want the people who went to medical school and specialized and read journals and go to conferences and Tumour Board every week and see 30 women a day with breast cancer to make this freaking decision for me.

But no one wants to take the risk. Triple negative means there are no markers on the cancer cells, so none of the targeted cancer treatments that work on 85% of breast cancers work. The standard of care is three chemo drugs, which I had, and thank God and all things good, I had a very good clinical response. After chemo and before radiation (a must because of the metastases in my lymph nodes) however, there is no standard of care when you don’t have a primary tumour/site. That’s why all my frenzied reading. Of course I’m only trying to catch up to what my onc and surgeons already know. And the docs gave me four surgical options and a non-surgical (yeah, sure, let’s do nothing and see how that works), but the plastic surgeon customized a fifth option, which I’m going with. 

I thought I was wasting the plastic surgeon’s  time seeing her for a second appointment when, after five weeks, I still couldn’t face a bilateral or even unilateral mastectomy, but knew I could never walk away with these large, dense breasts intact, harbouring God knows what. But I sat with her—Dr. Melinda Musgrave—and my boyfriend, who has been with me at every single specialist appointment, and half of my chemos, and she went through my most recent MRI, the two additional ultrasounds that my oncology radiologist at Princess Margaret Hospital wanted to rule out a different non-breast cancer (all clear, still sticking with the breast cancer diagnosis), and she went over all the options that I had been offered, and then said, “or, we could do this.”

I’m thinking of it as mastectomy-lite. Breast-conserving surgery on both sides, taking my sizeable natural breasts to a demure C or D cup. Everything that gets cut out goes to pathology. Maybe they’ll find my primary. Maybe they’ll find markers that make me not triple negative. Maybe they’ll find DCIS. My oncologist says depending on what they find, I may still proceed to the bilateral mastectomy, but at least I’ll know I explored my options. The surgeon will remove lymph nodes (called an ALND—axillary lymph node dissection) from levels one and two in my right armpit—the ones that alerted me to this great experience in the first place. Those will be analyzed in pathology too. The number of lymph nodes with cancer is the best predictor of survival. The one he removed in the sentinel node excision had cancer, so then I wait and see. My right breast will get radiation, as will the armpit.

So, surgery is in six days. Not long enough to get my house—and groceries, meals, laundry, school stuff, etc—organized. Please cross your fingers and say a prayer or send me all the good vibes you can. Thank you!

 

What’s with this sleeping thing???

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When I read about the side effects of chemo, I saw sleepiness and exhaustion. I experienced both of them, always together—I overdid things, I got exhausted, felt sleepy, slept.

I haven’t had chemo now for four weeks, and while some of the side effects—heartburn, bone pain, mouth sores—are a thing of the past, other wonderful side effects thrive: baldness and hairlessness, rotting finger- and toenails, papery skin, sadness and hopelessness, and the exhaustion.

I have figured out the formula for my exhaustion (excuse me if I’ve already shared it here—I’ve written so little lately, I think most of it is in my head), and this past Monday is a perfect case in point. I got up at 7:30, got Luka to his bus on time, woke Graydon, and we were on the road by 8:50 for a series of meetings that both of us attended. They finished by noon, then we headed for St. Joe’s where Graydon had a follow-up appointment with infectious diseases at 1. I remained in the car because I got an upper respiratory infection from his pneumonia hospital stay and I’m still suffering from it. By 2:30 he still hadn’t seen the doctor, and I had to go to Luka’s school to sign a permission paper by 3:00, so I took off, signed the paper, returned to St. Joe’s and picked up Graydon. We then went to Shoppers Drugmart. Around this time I wondered why I was feeling so sick and realized I had had no food since the night before—duh—and there was nothing fast and easy to eat at home, so I drove across the parking lot for Pizza Pizza’s walk-in special. Luka was thrilled with the after-school snack, and I felt satiated. I then proceeded to clean the kitchen, make a real dinner, clean up after, etc., etc., and bed by 11.

Tuesday, the next day, I slept through the alarm and four of its repeats. I got Luka up, went downstairs, fell asleep on the daybed, got up, pulled his lunch from the fridge, went up to wake him again, and fell asleep on the bed. I told him I couldn’t drive him if he was late, that he would have to take the city bus and subway, and his lunch was downstairs. And then I slept until he came home at 3:30. I slept from 3:45 until 6. Then I slept from 8:30 until midnight, and 12:15 to 7:30 a.m. today.

So on Monday, I spent seven hours outside the house running around. On Tuesday, I spent 13 extra hours sleeping.

When I was on active chemo, I scheduled “out” days, when I had appointments or places to go and things to do, and “in” days, when I would sleep off the time I spent “out” the previous day. That was a one-to-one ratio: out of the house for three hours, sleep through the afternoon the next day, two, maybe three hours. It was complicated by the fact I had an reactive airway disease (really bad, never-ending cough, runny, gummy eyes, really sore throat) from November to end of March, but it was still predictable that I would have to over-sleep amounts of time equal to time spent running around.

For the last couple of weeks, it has been looking like a one-to-two ratio: out of the house for one hour, catch-up sleep for two hours.

Is this the cumulative effect of eight rounds of dose-dense chemo? Add in some depression and a lot of uncertainty (anxiety), plus another infection? Hiding from the world? I don’t know. But I’m sure I’ll sleep on it.

Now Graydon is the patient

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Here’s one way to stop thinking about yourself—have one of your kids get sick, really sick.

Graydon had a headache, cough and pink eye on Tuesday, a headache, cough, fever and pink eye with severe eye pain on Wednesday, drove him to his doctor Thursday morning, didn’t like the hasty dx and prescription, so went to St. Joe’s Emerg (it wasn’t doctor shopping, but looking for the expertise to diagnose and treat a possible corneal infection) and got far more serious eyedrops and a referral to the Ophthalmology Clinic. All the running around and waiting in the car at Emerg—although I have finished chemo, I have no new blood counts to show me where my levels are, so no way was I going inside that emergency department—his wonderful girlfriend went in with him—I slept through the alarm Friday morning, making Luka late for school. After driving Luka to school, I passed out on the couch, and woke up at 2:30. I went upstairs, Graydon came out of his room with blood-red eyes and the left side of his face puffed out like a case of mumps. I told him to get straight in the car, and we went back to St. Joe’s.

By 5:30 a.m., a doctor assessed him as possible measles, which meant isolation, gowning up in those fetching yellow outfits, masks and gloves. Over the next two full days in isolation in Emergency, he was seen by the infectious diseases doctor, ENT, neurologist, had x-rays and CT scan head and neck, and was diagnosed with pneumonia and a walloping infection in his eyes, cheek and ear. He was SO MISERABLE. He was moved into a real room upstairs, isolation again, on Monday. On Tuesday, late in the afternoon, he turned the corner and was so much better! Discharged this afternoon, Wednesday.

Last night, I got sick. Figures. Sore throat, coughing, achy, a fever last night of 99.6 to 100°. Right now I’m at 101.3, which is beyond the limit of staying home when you’re on chemo. So I have called my oncologist and will explain the situation to her. I’m hoping that since my last chemo was three weeks ago, my doc will assume my counts are good enough to stay home. After 72 hours in one Emerg, the very last place I want to go tonight is another.

Will let you know…