Since the final chemo: Graydon’s birthday, more appointments, feeling low

CAM00171 three cats on daybed

More and more time spent sleeping, but I never sleep alone: three bed buddies on the daybed, from left, Angel, Dixie and Princess.

I’ve hit a low spot in my cancer side trip, which I think is directly linked with the end of chemo. No matter how lousy the poison makes you feel, at least you know cells are being killed (the good with the bad, but the bad are what counts). I think I’ve sustained my fighting spirit because I felt I was fighting. Now I feel like I’m waiting for cancer to come creeping back.

The whole mood thing started on the last day. My last chemo coincided with Graydon’s birthday, and my sister Heidi’s. Graydon came to the hospital to meet me for the end of my infusion. Then I got up from the bed, gathered my things, put on my sweater and went to get my jacket. I realized I didn’t have my toque, my favourite—a soft sand-coloured organic alpaca cap hand knit by my friend Annie—so I went back to my room. It wasn’t there, and with incredible speed and efficiency, the bed had already been stripped. I was confused. I wore it there, I wore it throughout the infusion, yet it wasn’t there. I emptied my bag and my purse, I looked in my pockets (knowing full well it wasn’t there), under the bed. The nurses and Graydon looked between the mattress and the bed frame, and we all went through the laundry hamper. I checked the lost and found box, ridiculous since it had only been missing 20 minutes. No cap. I was almost in tears as the nurses said they would keep looking and call me when they found it. They said to pick out one of the donated caps to wear home. Graydon was meeting me so that I could take him shopping for his birthday gift, and that was going to be a fun time—losing my cap and having to wear a red and blue and beige one that didn’t fit was effectively putting a damper on the shopping trip. We shopped, picked out a chain befitting a 21st birthday, and were walking down Queen Street to the car when Graydon looked behind me and said, “Mum, what’s this?” and reached down to the back hem of my coat and pulled up my alpaca cap! I could not believe it! We figured out that the cap must have been on top of my sweater on the bed and I picked up the sweater and put it on with the cap inside. I felt elated. We went out for birthday dinner (which we never do, for financial and immuno-supressed reasons) and the rest of the night went smoothly.

The next day I saw the surgeon and the reconstructive surgeon, and that’s when emotional overload began..

Since last chemo on April 8, I have:

  • Seen Drs. Simpson and Musgrave, and I am definitely more confused than ever about surgery.
  • Had my MRI on the 12th, to check on how good my response to chemo was.
  • Seen Dr. Zirckle re: laryngeal spasms and vocal cords, prescribed Losec, pharmacist says contraindicated with my other meds, I need an ECG, so will followup later.
  • Seen Dr. Fyles at PMH, told me about additional enlarged node not in the axilla, and has requested a pelvic ultrasound before mastectomy. He has also referred me to Psychiatry at PMH.
  • Had my genetic counselling at Mount Sinai, and blood taken for analysis. They are expediting the results so I should have them in two weeks to aid in my final decision about surgery (and if it’s positive for BRCA1 or BRCA2, I’ll have my ovaries removed as well).

So, that’s it for now. I have tried a few things to lift my mood, which I’ll write on later.

Eighth chemo—the last

Well, the eighth chemo came and went with little fanfare. I know a lot of women paint their nails pink with the pink ribbon drawn on them, wear a pink wig and their best “I’m kicking cancer’s ass” T-shirt to their last chemo. They take smiling pics with their favourite nurses, get balloons and have little “No More Chemo” parties. When I started my chemo December 30, I figured I too would do something neat on my last day—which seemed forever and a day away at that time—definitely do a fab manicure, bring my best baking, maybe even give a little gift to my nurses to show my appreciation.

And what did I do on April 8th? Nothing. 

Tessa came to meet me and spend part of the day, and Kelly came for a couple of hours with her signature gift bag of Real Simple and Martha Stewart magazines, chocolate-covered almonds and Lays potato chips, which I really appreciated. And ate. And read.

But the end of chemo made me feel exactly the way I did when Graydon finished his treatment for childhood leukaemia: we’ve lost our weapons. When you are on chemo, you are fighting the cancer. It may be poison, but it’s cancer’s poison too. Take away the chemo, and you’re not fighting anymore. You’re a sitting duck.

And that’s still how I feel. The side effects of the paxitaxel are worse this round, as they should be, since its effects are cumulative: six fingernails and lots of toenails look like they are rotting from underneath, the bone pain is excruciating between doses of dilaudid, nausea still requires pills, I am getting stupider and more forgetful and sadder, I sleep more and more. But as I clear the chemo from my body, those side effects should clear up too. And hopefully I’ve had a complete pathologic response to my neoadjuvant chemotherapy, and there isn’t much cancer left there to start the party up again as the chemo leaves.

Fingers crossed, St. Peregrine medal around my neck, red thread tied on my bra, I wait for my surgery.

 

Seventh chemo: my dad is the patient this time

Illustrators can make even chemo look good: Using gold nanoparticles, Rice University chemists have created tiny spheres that literally bristle with molecules of the anti-cancer drug Taxol. Credit: Eugene Zubarev/Rice University

Illustrators can make even chemo look good: Using gold nanoparticles, Rice University chemists have created tiny spheres that literally bristle with molecules of the anti-cancer drug Taxol. Credit: Eugene Zubarev/Rice University

I have been fairly absent from my little blog lately—thinking, dwelling, dealing, bargaining, spinning—none of it too productive.The seventh chemotherapy, of my beloved paclitaxel, came and went with the same old complaints of bone pain, tingling fingers and toes now, nails getting yucky underneath, oily-tasting food (the post about my tongue no longer being coated in Vaseline was jumping the gun, or I didn’t knock enough wood, pr something, because everything is back to tasting like oil, or fire or acid, or all three in the worst cases.

I worked in my biweekly pizza lunch volunteer gig at Luka’s school, some little grade-parent duties, bowling night for Graydon (we make it a family affair), appointments for Graydon, and got my big sleeps in before Luka and I went to London to be with my dad immediately following a big surgery: a below-the-knee amputation. I am a firm believer and practiser of having an advocate/companion at the side of the sick person in the hospital. That person has to be ready to be a personal support worker, gofer, quality control supervisor, record keeper, social convenor, you name it. Luka and I stayed in London two nights, staying at the hospital over three days (only three hours on the day of the operation), and brought my homemade almond roca in boxes so that four different shifts of nursing staff got the goodies—everyone likes a treat during their workday, and nurses moreso than many workers because their compassion is tested every minute. My dad’s nurses were excellent and super-super smart, assessing my dad’s pain, which was considerable and complex, and calling his team for different meds. That’s a team approach!

Dad came through his surgery with flying colours and is now back in Stratford, and I’m planning to get down there again as soon as possible.

Bald me

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Graydon and I were coming back from an appointment Monday morning when we decided to use our Timmy’s rims to get coffees (large latte, yay!). I had taken my cap off while driving, and because we’d been at a meeting, I had used some of my “Look good, feel better” mad makeup skills and looked more presentable than usual. We were discussing my eyebrows and how I know they have thinned considerably, Graydon saying they haven’t thinned, and that all of us have weird eyebrows, when I pulled up to the window.

The woman there looked at me and said, “I love your look!” My look. Waaa? I do not have a look. I touched my hair, oops, no hair! and realized what she meant. No hat, I’m bald. “Ha! Really? I was just saying to my son, I think my eyebrows are falling out too.” “Falling out?,” she asks? “Oh, I’m sorry, I’m on chemotherapy—my hair came out.” “Oh my, I see, well I love your look! You are beautiful! You don’t need hair, girl!” I laughed, said thank you, she said again I was beautiful, and that I was laughing and must be beautiful inside too, and I should love and love every day because every day was a gift.

All of this at a Tim’s drive through.

I thanked her for the kind words, told her she was beautiful, and off we went.

In honour of her, here’s a second bald photo, finally. Can’t say I love it, but at least I can accept it now.

 

Guest blogger: Tessa

mom hair
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Seriously, how does my mom rock being bald like this? I think that before she started chemo we were just scared. We didn’t know how she would be and of course we assumed the worst because with cancer everything seems to be the worst. So we imagined how bad it could get, how different she would look, how we would totally lose the mom we were used to… But now that she’s almost finished chemo she’s still mom. Look at her, she’s gorgeous. Yes, she was sleepy but not every day. She felt sick, her hands and feet were awful and red burning and uncomfortable, and it was bad, but not the worst. I guess most things in life are luck-of-the-draw. We got unlucky with cancer but we could have had it way worse, and a lot of people do. I know that a big part of why cancer seems so much less scary now is because of how strong my mom is. Everyone says it but I don’t think a lot of people understand that strong isn’t having something bad happen and saying “it’ll all be good”. It’s waking up at three in the morning when your daughter sleepwalks to invite her to sleep in your bed in case she ends up sleeping through her alarm the next day. It’s making dinner, it’s telling your kids that you will really be okay and live til you’re eighty, and it’s taking off your hat in the movie theatre when you have no hair, because it doesn’t matter.
If I had any other mother I wouldn’t get out of bed in the morning, but her strength is contagious. It’s there every day, just look at her.

Yucky news from my oncologist: serious post

nesting dollsWhen I got my diagnosis of triple negative breast cancer with no primary site, I had two things to worry about: a cancer that was only 15% of all breast cancers, very aggressive and with very limited treatment options (one option); no primary site, so nowhere to target with removal or radiation. When the surgeon said “remove the whole breast,” my oncologist said “we think it’s in the tail of the breast, so a lumpectomy should work.” I was happy with the oncologist’s opinion, and put all thoughts of a mastectomy out of my mind.

Last Tuesday, chemo #7, I had a big appointment with my oncologist. She’d been away for the previous week at the the 9th European Breast Cancer Conference 2014 in Glasgow Scotland. We started with a question of mine:

“With no primary site, and five lymph nodes with cancer, do I have metastatic cancer?”

“Yes.”

I was shocked.

“But I thought that was just called regional spread?”

“It’s the same thing.”

Wow. All of a sudden I was one of the women I’d been feeling so much compassion for. When I saw “metastatic” on a blog, or article, I actually thought to myself, “I’m doing everything I can. I won’t go metastatic.” So my appointment started off poorly, and was about to get a lot worse.

Without a blow-by-blow accounting, the gist of it was that my doctor had reconsidered, and was now recommending a bilateral—both sides—mastectomy, and recommending it “110%.” This triple negative cancer is aggressive, and we want to get rid of it once and for all, and with no primary, the safest thing to do is remove all breast tissue. You can consider reconstructive surgery, and it can be done immediately. It will require a number of revisions, since it is a work in progress when you use your own tissue, as opposed to saline implants. They will be large scars. It’s no walk in the park….”

I have been quietly freaking out for four days with this news. When I was trying to think of a visual to accompany this post, I thought of Russian matroschka dolls. The outside one, the largest, protects the others. Inside is the next one, slightly smaller, but still protecting the rest, and so on. The larger one is the me everyone sees. The next, the one that acquaintances see, the next, the one that, say, the neighbours see, then the me the kids’ teachers see, and so on, through the me my friends see, my relatives, my sisters, my children, my man, down to the tiny, unprotected and raw me. And that is how I feel. This diagnosis, not an estrogen-positive breast cancer, Stage III with a tumour on the mammogram that can be measured and staged, but a vicious. aggressive cancer with a tumour lurking somewhere out of sight. I feel so alone.

There is no doubt that I will undergo the operation. I understand the rationale. I don’t want my breasts if they harbour a cancer that can strike back again in six months or a year or two. I want the bast chance to escape this cancer, and if this is the way, so be it.

But the thought of the surgery, or surgeries, since there will be three, makes my stomach heave and my heart jump and my throat close. I feel my shoulders burn and my arms shake. I’ve had many things happen in my life that people have said “I don’t know how you do it.” Well, this time, I don’t know how I will.

 

My tongue is no longer wrapped in Vaseline!

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Here is a rant I’ve been meaning to have, but haven’t because it seems very petty in light of cancer and chemo and blisters and pain. I had mouth sores that killed, and moved out to the corners of my mouth, which was both painful and pretty, and I did complain about them.

The most annoying, disappointing and frustrating side effect of my chemos has been the fact that I cannot taste anything. That is apart from foods tasting too spicy and hot when in reality they weren’t hot at all according to everyone else at the table. When food didn’t taste too hot, it tasted like my mouth and tongue were covered in Vaseline. Like no flavour could get through, no matter how good it smelled, or looked, or even when I made it myself, and seasoned it just right just like I would always season it—it tasted like NOTHING. And I behaved like Einstein’s definition of insanity: “doing the same thing over and over again and expecting different results.” I made my special spareribs with secret molasses orange sauce, roasted garlic mashed Yukon potatoes,  roasted marinated peppers, even my beautiful cookies, and nothing tasted like it was supposed to. Nothing tasted like anything!

But now, after another rollicking week of not being able to taste anything the way it is supposed to be tasted, I had THE FIRST THING THAT TASTED NORMAL SINCE THE BEGINNING OF JANUARY!!!

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!st prize for a food tasting like what it is supposed to taste like goes to half a toasted everything bagel with Philadelphia herb and garlic cream cheese!

Now of course I’m not going to eat anything for hours in hours, in case this was a fluke. I want to luxuriate in a taste that tastes the way it is supposed to taste!

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