Good news about my lymphedema!

After less than two weeks of bandaging, these two areas of the ring finger on my right hand went numb and feeling didn’t come back. I was told to try taking the bandages off for three hours and see what happened. Nothing. Then, I was told to leave them off for eight hours. Nothing. So Dr. Chang, physiatrist with the Cancer Survivorship Centre at Princess Margaret, sent me for a nerve conduction study (a really freaky test I don’t hope to ever need again) that found it was a branch of the digital nerve, no idea why, no treatment, no reason for it to spread, keep going with the bandaging.

I have definitely been in a stall with this blog, and I blame it all on my lymphedema. And the fatigue, but this post is about the arm. For the last three months everything has been about my arm: it hurts, it burns, it feels bloated and heavy, it pinches, my hand cramps, my skin crawls, it’s numb, it’s pins and needles, etc., etc., ad nauseam. It won’t fit in any clothes, I can’t get comfortable at night, my fingertips freeze, bandaging takes forever, I AM NOT NOR EVER WILL BE AN RMT!

Two weeks ago, after almost three months of massaging, exercising, bandaging and Cobanning, I went from 24% to 11% more than the left arm. Even though I was told that 11% was good enough to move back into a sleeve, my thinking was that if I stopped bandaging at 11% and went to a sleeve, which only maintains your size, the next time I would flare it would be in addition to an arm that was already 11% larger than the other. My flare this summer was a 21% increase, so if next summer I increase the same amount, I’d be looking at an arm 32% larger than my unaffected one.

This may be a flawed theory, who knows, but it makes sense to me.

I was so deflated and hopeless and angry after that measuring that I began the most aggressive bandaging and pumping and massaging (deep and surface) I had the entire time. I stared at that arm with such hatred I think it might have shrivelled a little just from the evil eye.

Yesterday I went for measuring at the Survivorship Centre at Princess Margaret again and there I was—6%!!!

That’s good enough for me! I went to my fitter—Mansuetta—and got measured for a new custom sleeve and glove. The thought of putting these bandages into a bag and burying it in my closet has me giddy. Wearing a sleeve and a glove will feel like running naked through a sprinkler on a scorching summer afternoon to me (that’s me as a kid, not now, God forbid).

In four weeks I will have my new gear, just in time for my return to work.  I’m looking at starting a graduated schedule the first week of December. More of that soon.

Celebrating 400 posts: is there a cake in there somewhere?

Thank you to Spanish, Portuguese or possibly Catalan blogger Tracy for this monumental image! http://tracycorrecaminos.blogspot.ca/2012/02/cuatrocientos-seguidores-cuatrocientos.html

I have reached the milestone of 400 posts on this blog. I started it September 21, 2007 (coincidentally my daughter, Tessa’s, 16th birthday) as the mom blogger for Canadian Living magazine. I was a two-years separated, single—or I much more prefer the term, double—parent with three kids ages 16, 14 and 7. The blog has seen me through the rewards of parenting and the challenge of cancer and lymphedema, and with cancer in my rearview mirror it’s now about the longterm effects of that fight as I get back to work. I can’t say so much about my kids anymore as they all have control over their own social media selves and have varying degrees of approval regarding my posting about them. I’ll have links to Tessa’s latest dancehall videos in a future post if she says OK 😀

And instead of cake, we had Dufflet Pastries sticky toffee puddings for dessert tonight. Oh yes, that’s how to celebrate!

Goodbye dishpan hands!

 

This was me, drowning in angst and ennui at the prospect of another two and a half hours of dishwashing. But now I know it’s easier to chunk big jobs into more manageable sizes, then I would look out the window and think to myself, “I only have eight 20-minute chunks of dishes to do. Yay!” Image is from http://www.preslaysa.com/how-to-clean-1/

World Cancer Day. What?

“Now, more than ever there is a need for a global commitment to drive policy and implementation of what we already know to push the global fight against cancer to a whole new level. Action taken by every person, organization, and government will reduce the burden of cancer. On World Cancer Day, we must show that cancer is ‘Not Beyond Us’.

——Mary Gospodarowicz, UICC Immediate-Past President, Medical Director of the Princess Margaret Cancer Centre at the University Health Network

That quote is from one of my two cancer hospitals. When I heard that Wednesday was World Cancer Day, I thought I should do something. My very first reaction was to bake cookies—Valentine’s is around the corner, cookies are top of mind, and as a baker of fancy cookies, each special occasion has a cookie to go with it. But this one doesn’t really, aside from cookies with ribbons of various colours.

So I thought maybe I should go to an event and lend my support. Wednesdays I attend an exercise class that increases lymphatic drainage, so I am up, dressed and sociable for the most part, and tomorrow I am meeting an old friend for lunch after the class. I would be thrilled if we could get through the lunch by not even touching on cancer, let alone celebrate it or spread the good word. Time to look it up on the inter webs: World Cancer Day.

Not too many things to do to celebrate World Cancer Day. There’s a selfie contest, and the screening of N.E.D. , but I found a very real way to spread the word: my cancer IQ self-tests. I did the online test for breast cancer, just five minutes of my time, and guess what my risk for breast cancer was?

YOUR RISK: HIGHER THAN AVERAGE

An average Canadian woman’s risk of developing breast cancer in her lifetime is 1 in 9. Your risk for developing breast cancer is higher than most Canadian women. Use the information in your risk assessment report and talk to your doctor or nurse practitioner about what you can do to help reduce your risk.

Well, with the benefit of hindsight, you can see how accurate the scoring was on that one! They have quizzes for colorectal, lung and cervical cancer as well as breast.

So, sorry, no cookies to celebrate World Cancer Day, just some info to share that might save your life. Go figure…

MRI reveals adrenal adenoma: NO BIG DEAL!!!

What the CT scan showed, and the MRI detailed, was simply an adrenal adenoma, a noncancerous tumour.

YAY!!!

Join me and Spidey in a dance of cancer freedom!

Yes, this is what I did once I got out on Queen Street in front of St. Mike’s. I was ecstatic! I love this gif, thanks to http://gifvault.com/dancing-gif-111.html/dancing-gif-111

I have spent so much time and energy convincing myself and Tessa that I would be told I needed a biopsy this afternoon that when Dr. Brezden told me I was clear and could now go home and celebrate, I didn’t know how to respond. I was in a daze of sorts. I wandered out right past the desk with my blood req in hand and they called me back to set up the next appointment. They thought it was pretty funny that I had forgotten the drill already. They set me right up with a printout of upcoming visits to St. Mike’s: I have a plastic surgery app’t, mammogram, and checkup with my cancer surgeon in November, and see my oncologist on December 18, exactly one year from my sentinel node surgery.

From the hospital I went to my place of work, picked up a fellow editor friend, drove to her house and this happened:

Only when Diana opened the bubbly, she did it like a pro, with a pop and no loss of champagne. Pic from http://www.huffingtonpost.com/richard-jennings/holiday-champagne-buyers_b_4325064.html

And then this happened:

Hmmmmm, this was tasty. Made me wish I had a driver so I could have indulged more. This pic courtesy of http://www.matfenhall.com

So, this is the confirmation that there is no discernible cancer in my body now, after chemo, surgery and radiation. Thank you to the many doctors and nurses who have taken care of me, and thank you to my family members and friends for their prayers and positive vibes and healing thoughts. It looks like everything worked.

I should sleep very well tonight!

Thank you all ♥

It was a sweet HAPPY birthday!

Happy birthday bliss by Tessa and Luka, collage by Tessa

Mother’s Day this year found our house in tatters emotionally, psychologically and physically—my surgery was coming up, I was very anxious, I was sleeping far too much and ignoring everything I could.

Several weeks later, one week after my partial mastectomy, my birthday dawned to a breakfast in bed of French toast, trimmed slices of oranges, warmed maple syrup and a wide mug of café mocha on a tray decorated with ribbons of sparkly gauze and gem flowers and a ball bouquet of gardenias. Wow. And there was a Birthday Girl pin for me to put on.

Then Tessa and Luka led me outside my bedroom to show me the decoration they’d put on my door (top right photo). I have always encouraged artistic expression on our bedroom doors, and the collage of Tiffany & Co., Cartier, Chopard, Bulgari and Piaget jewellery that Tessa made for me in Grade 7 was getting pretty faded (!!!, and for devotees of The Secret, I called these items to me every day for the last 10 years or so, and no luck), so these birds who are clearly outside their cage and the pretty flowers will now inform my thoughts.

Then they led me down the stairs to find the hall and kitchen literally festooned with Happy Birthday banners, Happy Birthday streamers, all kinds of birthday balloons taped up, the door to the basement covered with pink birthday princess wrapping paper. In the hall was a HUGE map of the world (I’d been taping up little ones for all of us to sharpen our geography skills and fantasize about where we would like to go one day, but this one is a serious whole-world map).

Tessa had baked extremely health-conscious cupcakes—applesauce replacing oil, whole wheat flour replacing white flour, honey replacing white sugar, and a cinnamon cream cheese icing—and put them on her tiered tea-service plate, with candies and gem flowers and totally sweet little toppers that said “Love you Mom.”

There were gifts, all of them sentimental and revealing deep thought. The one that touched me most was sort of an affirmation of how much the kids know that I have loved them all their lives. Long story warning:

For Tessa and Graydon’s first birthdays I made sweet First Birthday cakes—foreshadowing Tessa’s healthy cupcakes some 22 years later!—carrot cakes with crushed pineapple, applesauce and no nuts. I hadn’t starting baking and decorating my fancy cookies by then, so the cakes were quite elaborately decorated. Luka’s first birthday cake would be no different. I went to McCall’s—the best by far cake baking art supply store, classroom and online presence—and got the blue gel dyes, blue and green and silver dusting sugars, silver drags (known as these teeny silver balls that go on cakes and cookies) (that I researched to see if a one-year-old should eat, and found no research, so decided to stay on the safe side and keep the blue icing and silver balls on the adult part of the cake, not where my little Lukey would be eating) (which brings again my desire to see if those silver things are actually OK to eat—see this link to http://www.snopes.com’s message board on the subject if you, too, are curious…).Back to the store: I also picked out plastic decorations—a pale blue old-fashioned tricycle, hot air balloon, a stork, baby booties, an intricate cutwork banner that said “Our baby’s first.” SO CUTE!

Luka’s first birthday , December 21, fell on a Friday, the party was set for Saturday. Graydon hadn’t been feeling well the week before. I took him to the doctor the morning of the 12, and was called back that afternoon to take him to Sick Kids for stat bloodwork, then back to his paediatrician on the 14 for a full exam and workup in anticipation of an upcoming appointment at Sick Kids. That appointment was 8:30 a.m. Monday morning, Dec 17. That’s the day Graydon was dxed with acute lymphoblastic leukaemia, and we didn’t leave the hospital for two weeks. I stayed at Graydon’s side 24 hours a day, slept on the window seat at night (fitfully), and Al brought Tessa and Luka to visit. But the cake, and the first birthday party as it was planned, never happened. I still have the decorations packed away.

Tessa and Luka bought me a new box of baby cake decorations for my birthday, and I think it echoed the Mother’s Day that didn’t really happen, to show me how much they know that I love them. I love my kids. They are everything to me—Tessa, Graydon and Luka—and the reasons I get up every day.

Sorry for such a long post, but I’m having a surge of energy, and I gotta grab it and take advantage while I can.

Enjoying cPR

 

Some girls celebrate with a mani-pedi, others with a new pair of shoes—this girl celebrates with silky gravad lax. Image courtesy Donald Russell: http://www.donaldrussell.com/ultimate-gravadlax-salmon-f104.html

 

Feeling just like King Julien

I’m still basking in the glow of my cPR (complete Pathological Response), and trying to spread the love back to everyone who sent their prayers and positive vibes my way through the first six months of this unwelcome side trip in my life. I wanted to do some kind of celebration, maybe a real party, but that would involve all kinds of planning and energy that I don’t have, so after the pathology appointment Tessa, my man and I headed for the St. Lawrence Market. When I was an editor at Toronto Life magazine and later at WHERE, the market was one block away, and I would be there at least twice a week, usually more. I love that place, but since working at CAMH, getting there is a virtual impossibility during the week, and I’m happy to stay out of the downtown on the weekends, so going there was a huge treat. On the list of the celebratory purchases were a full pound of Domenic’s house-cured gravad lax with lemon zest and dill, St. Urbain bagels (Montreal style, baked right there), Jelly Belly’s (my fave), Callebaut milk chocolate chips (not for baking, just for precision portion controlled eating) and other little treats. We ate the gravad lax right from the butcher paper as we were driving home—and there was still plenty left for a vodka toast when we got there (yes, I have read the articles, I had barely a third of an ounce, thank you). We said we would properly celebrate when things return to the new normal anxiety-wise.

 

Shaking off that anxiety angst

I’m working on it, although I haven’t had a chance to really catch up on all the quality sleep I missed while twisting in the how-much-cancer-is-left?? wind. Luka was still on his Ottawa school trip this morning, and I had no appointments to get to, so I planned a good, long lie-in. Unfortunately the message was not relayed to my brain, which pinged awake at 6:40 and would not shut off.

But I didn’t have an endless loop of what-if-it-spread-past-the-original-five-nodes-and-the-chemo-doesn’t-work thoughts. Instead, my mind just wandered around: should we try to visit my dad this Sunday? Will my breasts take a two-hour drive each way? Maybe some tensor bandages and the sports bra together? What would he like for a present? Normal thoughts. What a relief! (I just read that over, and I crack myself up. Asking yourself if your breasts can stand a two-hour drive is a normal thought?)

 

Radiation planning

The morning after the good news appointment I was at Princess Margaret  Hospital for 9:30 to sign consents for radiation. I was in an excellent mood, feeling very positive, on time. I met my second-in-charge radiation oncologist and my radiation tech, of course had to whip off everything above the waist—what else is new? I’m surprised my pharmacist and dentist don’t ask the same thing—and when the doctor started to explain radiation, I asked if it was OK if I recorded our conversation. Either Tessa or my man has accompanied me to particularly info-packed appointments, and if I take notes I have them as a back-up should I forget something. Plus, as treatment goes on, I have found it difficult to actually grasp some concepts, so recording seemed like the best plan. My sisters and I often record doctor visits with our parents so we can share info with the other siblings. But my new doctor said no. I blinked. I explained that I was alone, that I was very anxious (hadn’t been up to this point), that chemobrain was making me stupid, that note-taking was physically laborious and required too much concentration to be able to keep up. She said she would talk veeeeerrryyyyyy sloooowwwwwwllyyyyy, and I lost it. I started shaking and tears literally bounced out of my eyes and down the front of my stupid hospital gown. She handed me a box of tissues and asked if I would like to take a moment. Yes, I’ll have a moment in early 2001, after Luka was born but before Graydon got leukaemia, when Tessa was dancing and my marriage was still intact. That would be nice. I choke-sobbed for a minute or two, then splashed my face and opened the door and took notes I can’t even read.

I will have 25 doses of radiation, five doses a week, to my right breast, axilla, and because my cancer is metastatic, the internal mammary lymph nodes and supraclavicular lymph nodes too. It can’t start until my plastic surgeon, Dr. Musgrave, gives the word that my healing is sufficient. I see her on the 18th, and then radiation mapping on the 26th, and then we see when I start. Radiation should start four to six weeks after surgery, so I should be on track.

 

Dining like a queen

This afternoon the lovely lady from Presidential Gourmet arrived and delivered dinners four and five: rainbow trout and a quinoa and grilled vegetable salad, and a baked pasta with garlic bread. I cannot say thank you enough to the Good Food Fairy who has made it possible to have delicious, healthy dinners five nights in a row—no planning, no grocerying, no prep and virtually no cleanup. It is incredible, and appreciated by all of us. And it couldn’t have come at a better time: I have just enough energy to really enjoy the spoiling!!

Thank you, whoever you are!

Tuesday morning as I was trying not to rise to consciousness because that would mean starting to worry about my pathology full-time for another day, Tessa wandered up to my room and said:

“I got a weird call just now.”

“How weird? A breather?”

“NO! Not that kind of weird, a nice weird…”

“So, tell me?”

“No, not til later.”

“What do you mean later? What weird call can wait?”

“This one. It’s kind of about you.”

Then followed wheedling, and strategic questioning, and some reverse psychology, none of which worked. So I had to wait until late afternoon to find out what “weird” was.

Mid-afternoon Tessa cleared the kitchen table where she was working on her philosophy course. Not a big hint. Eventually, a really smiley young woman came to the door with a large black cloth bag. Tessa was grinning ear-to-ear, so was I, but like an idiot, since I still wasn’t clear. The woman said that a friend of mine thought that I could use some help with meals right now, and so had arranged to have FIVE DINNERS, from Presidential Catering, delivered starting that night. How could anyone have know the stress level in my head and house? I haven’t given a care about food for this week, and the kitchen shows it. If it wasn’t for Tessa, no one would be eating anything.

The menu was developed by an oncologist. The ingredients are organic. The chef is five star. We have had salmon in citrus olive oil, baby bok choy, rice, an arugula, tomato and sunflower seed salad with a balsamic vinaigrette, incredible cauliflower soup (we’ve had it hot and cold and both are delicious), quesadillas with fresh salsa, and shepherd’s pie, all incredibly delicious. And two more meals to come.

This is such a thoughtful, insightful gift, and the timing couldn’t be better. The worry over this pathology report has had me in pieces. Even now, there is no energy in me. So, thank you, whoever you are. I completely respect your desire to remain anonymous, and that makes this gift even sweeter, that someone is generous enough to give a gift on this scale, and not want any credit or public acknowledgement. Know then that my appreciation is huge, and I feel very humbled by your kindness and thoughtfulness.

And I’d like to say that if anyone is looking for a caterer, I thought Presidential Gourmet was a large-scale catering firm, but these fresh, delicious, clever meals show they can do anything.

Thank you again. Curiosity may have killed the cat, but I’m bigger and stronger than the cat. But maybe someday you’ll tell me who you are?

Crack out the fireworks: Best possible outcome I could have hoped for!!!

This is what is going on in my backyard tonight. Bring a blanket! Courtesy of Nagoya-info.com http://nagoya-info.com/4249/the-beauty-of-hanabi-in-japan/

 

I am so happy! Even though the surgeon told me my pathology wasn’t available yet, THREE WEEKS after surgery when it should have been ready in seven days, and then he sent his nurse off to find out why, and I stood in the hall afraid I would actually throw up, and his nurse came back and said it was just being signed off and uploaded, and we—Tessa, my man and I—went to sit down and wait, when he finally handed it to me and said, “Here you go. It’s all gone,” I could barely believe it.

“You mean I had a complete pathological response?”

“Yes.”

“So this is the best possible thing?”

“Yes.”

“So this gives me the best prognosis?”

“Yes. There is no cancer in any of the nodes, except for the first one, of course [the one he removed for the diagnosis]. And none in the breast tissue.”

And he handed me the report, which Tessa and my man and I went over line by line, with varying levels of understanding. My oncologist will explain it tome in such detail in a week that she said I will understand every single word of it. For now, it says no evidence of cancer and that’s enough for me!!!

THANK YOU, EVERYONE WHO READS HERE, AND THOSE WHO HAVEN’T YET, FOR SENDING GOOD VIBES, PRAYING, CROSSING FINGERS, KNOCKING WOOD, STABBING CANCER DOLLS WITH SHARP OBJECTS (you know who you are), FOR SUPPORTING ME AND BEING THERE FOR ME. I NEEDED YOU AND YOU CAME THROUGH. THANK YOU!

Here is a beautiful display of Kumano fireworks, the best in the world. Turn off all the lights in the room, go to full screen, and imagine you are in Japan enjoying hanabi.

 

 

 

My tongue is no longer wrapped in Vaseline!

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!!!

!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!