Eight-year survivor of triple negative breast cancer!

When I got my diagnosis of triple negative breast cancer (TNBC) in 2013, my doctors told me to stay off the internet because the information on there was dismal. So of course I went there for a while and yes, it was dismal. So, now that I’m eight years down the recovery road with TNBC, I thought it’s about time to pop back in here and say it’s still in remission. Yay!!!

I survived lousy interwebs survival rates for triple negative breast cancer, dose-dense chemotherapy (two weeks apart rather than the usual three weeks apart), tons of side effects, went bald, had breast-conserving bilateral mastectomy, big path report, 25 rounds of radiation, lymphedema of the arm, hand and sometimes, trunk, fatigue, more reconstructive surgery, yadda, yadda, yadda, back to work, super interesting work I might add, my daughter had twin boys, big life stuff, and I am happy to be here!

So if you’ve come to my blog as a TNBC patient/survivor/info seeker, please read on down, or go the the Pages section to the left on this page, and go to the bottom underlined heading, Start here, to see where you really want to start reading.

Out damned spots! or, my tattoos no longer trigger my carcinophobia

 

Yes, this is a photo of my chest. If you look down to the lowest loop of the necklace (made by me, 8mm moss agate beads and tiny black glass beads) you’ll see just above that strand one of my radiation tattoos. No big deal, yes? But when I see it every single time I look down, every time I spill something on myself (which is alarmingly often), every time I look in a mirror, it is a big deal. It smirks at me “Hi, I’m still here, maybe you’ll need me again.” Or it proclaims “Hey! This woman had breast cancer!” Or it snarks “Ha. Thought you wouldn’t think about cancer today, did you? Gotcha. Think about it.”

But, the joke is on the tats.

Two weeks ago I went to visit the office of Dr. Sean Rice, Toronto plastic surgeon, founder and director of Rice Cosmetic Surgery, thanks to a press release issued by Ashworth Associates, and a number of articles and TV news spots on Dr. Rice. In the month of October, Dr. Rice waives his fee, all of it, for removing radiation tattoos from breast cancer treatment.

First, I had to get clearance from my radiation oncologist. No problem. Then I made the appointment and spent ages preparing mentally for a procedure that was not medically necessary (I do not like pain of any kind). I’ll go through the whole experience because it was so short! In the door, greetings from two really lovely—beautiful—women, go to the procedure room, snap a pic of my chest, put on cool glasses, lie down, swab, a whooshing cold rush of air, three electrical zaps, and done. I couldn’t believe it. I originally said I would only get the centre one removed, but it was SO EASY I asked if I could have the second one zapped as well. They use new technology for tattoo removal, a PicoSure laser, which is apparently light-years ahead of the standard equipment. I was Polysporinned and bandaged, and told to keep applying lots of Polysporin and they would scab up and in three or four weeks I would be tattooed no more.

Oh yay!

That’s one more thing crossed off the list of things to do before I go back to work.

I cannot wait to be able to look down and see no reminders of radiation…

 

 

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/

Stalled

 

Oh man oh man, this is SO how I feel now… a poorly functioning entity surrounded by disaster.

Wow, it’s been a month and a half since I last posted, and it feels like a year ago or just a few days. December was a month of crappy anniversaries (my diagnosis, terrible holiday, start of my chemo, Graydon’s leukaemia diagnosis and three weeks inpatient, including Christmas) plus the first Christmas without my dad. My boyfriend was wiped out with flu, so we didn’t see each other for more than a week. I was exhausted, so at the last minute we didn’t go to Stratford on Christmas day like we always do—I slept most of the afternoon and evening, getting up on autopilot and frying chicken breasts for Christmas dinner—what a disgrace. We did go to Stratford Boxing Day and had lasagne made by my sister-in-law Sandra—delicious. We visited with my mum, Sandra, Ed and my nieces (in town for a couple of days), sisters Heidi and Juli, and my real BFF, Pam. She lost her dad a few months before I did, and then her mum died just before Christmas, so it was a sombre time in their lovely house. There were many, many occasions where drinking would have been the best answer ever, except the connection of alcohol consumption and breast cancer is so huge, I barely drink at all now. Maybe this is part of the problem—no lubricant for my rusty heart, brain and soul.

So it is now a full year since I started treatment. My testing, diagnosis and chasing the elusive-and-never-found tumour were in November and December 2013. Started chemo December 30. Had bilateral partial mastectomy May 22. 25 rounds of radiation in July and August. Severe burns and fatigue September and October. Lymphedema in right arm, hand, fingers, breast and trunk November, which will continue forever, and fatigue and brain fog (cancer-treatment-related cognitive dysfunction) that continue to make me not myself at all.

Is it my new normal? I HOPE TO GOD NOT!!!

I haven’t posted for six weeks because I was very down. I am now going to try to crawl on up out of my hole by doing things suggested by my cancer navigator over at St. Mike’s (Miriam Sweet-Goldstein, a very sweet—really, a totally appropriate adjective—and concerned woman who has walked the walk herself and now helps others to do the same; she takes the time to listen, and has great suggestions), and by Lorena and Stephanie in the Cancer Survivorship Clinical Program at Princess Margaret. I have not “bounced back” from my cancer side trip, and need to. Facing my mortality, the fear of recurrence, my lifelong lymphedema condition and now the changes that plague my energy level and brain have just been too much for me. For years and years, people who know me well and the misadventures of my family members have said to me “I don’t know how you do it every day!” Well, after this last year, I’m just not able to do it anymore, and I have to change that.

I’m taking on the commitment to post more often as a way to think and type and spend work-type time on the computer. So the posts will be smaller and more frequent.

Thank you for hanging in here with me—if you’re still reading, that is.

Say hello just to let me know? I’m hoping for four responses…

Lymphedema, my new BFF!!!

Once I get my lymphedema under control, I might get a compression sleeve from the company Lymphedivas—these are just some of the patterns. From the blog The Lymphie Life (http://lymphalexa.com)

My lymphedema was diagnosed by my oncology surgeon Nov. 6. I spoke to my cancer navigator, Miriam, and she said get to a lymphedema specialist as soon as possible. She sent on a referral to Princess Margaret for the Lymphedema Clinic, and gave me the name of her lymphedema specialist, suggesting that I call as soon as possible because Lindsay is very popular, and the sooner the better in starting to beat this condition back.

I saw Lindsay Davey at Toronto Physiotherapy two weeks after diagnosis, Nov. 20. My man came with me to offer support, ask questions and observe and learn the massage technique. I felt badly for both of them at the outset, because while I love to be touched, I hate to be poked, prodded and touched in an “anatomical” way. (I cannot take my or anyone else’s pulse, feel carefully along a bone looking for a bump, give or receive a good massage. Too much mucking with body parts and components. I find it icky, hence no career in this field).

She took an excellent history, then examined me. I have lymphedema of the right arm, hand, trunk and breast. That sucks. The trunk means my side, over the ribs, and back around the area of the breast. She completely overwhelmed me with info, and we all laughed about it, because you could learn this in a series of lectures, or expect a physiotherapist to condense it to 40 minutes and deliver while giving the very specific type of massage that is used for lymphedema drainage. My man took in lots, I took in some, and was glad that I’d read up on it all before hand.

The massage is done without oil or lotion, because the massaging hand is supposed to drag the skin so the lymph fluid underneath the skin can be moved. When a patient like me has 15 lymph nodes removed and has 25 rounds of radiation, changes are pretty good that lymphedema will follow. Not guaranteed. In MY case? Iron-clad guarantee I’d get it.

On the I am now going to paste in here the best thing I have found about lymphedema, complete with illustrations. It could get heavy, but read on. In the next post I’ll include pics of me in my new sleeve.

From the Breast Care Center of Miami:

Lymphedema

Definition: 
Lymphedema is defined as the abnormal accumulation of protein-rich fluid in the tissue, which causes chronic inflammation and fibrosis.

Incidence: 
It is estimated that between 3 and 5 million patients in the United States suffer from either upper or lower extremity lymphedema. Arm lymphedema or chronic swelling of the arm occurs in 10 to 30% of women following treatment for breast cancer. In the United States, the most common cause of secondary lymphedema is the impaired or disrupted flow of lymph fluid through the draining lymphatic vessels and lymph nodes, usually as a consequence of surgery and/or radiation therapy. If the remaining lymphatic vessels are unable to accommodate the increased lymphatic load, accumulation of lymphatic fluid develops resulting in swelling of the upper extremity. Once damage has occurred to the lymphatic system the transport capacity is permanently diminished. The risk of lymphedema is life-long.

Functions of the Lymphatic System: 
Lymphatic vessels drain fluid from all parts of the human body. The lymphatic fluid is formed at the point where arteries turn into veins just underneath the skin. Our body produces between 3 and 5 liters of lymphatic fluid on a daily basis. This fluid gets reabsorbed by the lymphatic vessels and it travels to the lymph nodes where it gets filtered and “cleansed”, and then rejoins the circulatory system at the level of the neck.

	• Reabsorbs the continuous production of lymphatic fluid
	• Removes excess fluid
	• Blocks the spread of infection or cancer cells
	• Maintains balance of fluid and protein

The Lymphatic System and Breast Cancer: Most of the lymphatic vessels of the breast drain fluid to lymph nodes under the arm and to a lesser extent to the lymph nodes behind the chest bone and collarbone region. Breast cancer cells can spread through the lymphatic vessels into these lymph nodes. The standard surgical treatment for invasive breast cancer is to remove the lymph nodes under the arm and look at them under the microscope to detect cancer cells. The only accurate way to find out if cancer cells have spread to the lymph glands is by removing them. The two techniques employed to examine the lymph nodes are the axillary node dissection and sentinel node biopsy. Sentinel node biopsy has replaced axillary node dissection as the procedure of choice in staging the axilla in patients with early invasive breast cancer. It prevents an axillary node dissection in approximately 70% to 80% of breast cancer patients. The incidence of lymphedema using this technique is approximately 3%.

 

Axillary Lymph Node Dissection: The removal of the axillary lymph nodes interrupts the drainage of the lymphatic fluid from the arm and breast. As a result, it will limit the transport capacity of the lymphatic system. Some breast cancer patients may develop lymphedema.

Arm Lymphedema: A simple way to try and explain what may happen when lymph nodes are removed and lymphedema occurs is to use the analogy of a traffic jam when four lanes of traffic are detoured into just one lane. As there is only one lane to pass through, as a result of lane closures, (lymph node removal) the other three lanes of traffic (fluid) must get in line to merge over to the only open lane. This results in major backups as each car must now make room to allow the other cars from the other three lanes to merge. The end result is slow moving traffic (fluid) and a massive accumulation of cars (more fluid) waiting to pass through the only open lane (one lymph node).

Signs and Symptoms of Lymphedema: 
The signs and symptoms of lymphedema of the arm include:

	• Feeling heaviness and tightness in the arm
	• Aches and discomfort
	• Limited motion of the arm and swelling

There is also an increased risk of infection resulting from a trivial skin breakdown. If breast preservation is chosen, the affected breast is also at risk of edema.

Treatment:
Early detection is paramount as lymphedema is potentially reversible when treated in its early stages. Once lymphedema is diagnosed, treatment should begin as soon as possible. The gold standard treatment is complete decongestive therapy.
This includes:

	• Manual lymphatic drainage
	• Compression bandaging
	• Therapeutic exercise

Once lymphedema is under control, patients are recommended to start a maintenance phase which includes skin and nail care, weight control and diet, wearing a compression garment especially when flying, exercise program, and strict blood pressure control for patients with a history of hypertension.

Prevention Practices to Prevent Lymphedema:
Patients should be instructed on precautions to decrease the risk of developing lymphedema or avoid its progression. The patient should bear in mind that most of the measures your doctor will tell the patient is to protect their arm. However, these measures are determined without scientific data. The old school teaching promoted the dictum of primum non nocere (first, do not harm).

Recommendations from the National Lymphedema Network Include:

Skin care:

	•	Avoid trauma / injury to reduce infections
	•	Keep extremity clean and dry
	•	Apply moisturizer daily to prevent chapping/chafing of the skin
	•	Attention to nail care: do not cut cuticles
	•	Protect exposed skin with sunscreen and insect repellent
	•	Use care with razors to avoid nicks and skin irritations
	•	If possible avoid punctures such as injections or blood draws
	•	Wear gloves while doing activities that may cause skin injury
	•	If scratches or punctures to skin occur, wash with soap and water, apply antibiotics, and observe for signs of infection
	•	If rash, itching, redness, pain, increased skin temperature occur, contact your physician immediately for early treatment of possible infection

Activity /Lifestyle:

There is now good evidence that progressive exercise does not affect the severity of breast cancer-associated arm lymphedema. A progressive weight-training program should be carried out under professional supervision. This has been shown to decrease the incidence of exacerbations of lymphedema and reduces symptoms as well as increases overall strength.

	•	Gradually build up the duration and intensity of any activity and exercise
	•	Take frequent rest periods during activity to allow for limb recovery
	•	Monitor the extremity during and after activity for any change in size, shape, tissue, texture, soreness, heaviness, or firmness
	•	Maintain optimal weight

Avoid Limb Constriction:

	•	If possible, avoid having blood pressure taken on the at-risk extremity
	•	Wear loose fitting jewelry and clothing

Compression Garments:

	•	Should be well-fitting
	•	Support the at-risk limb with a compression garment for strenuous activity except in patients with open wounds or with poor circulation in the at-risk limb
	•	Consider wearing a well-fitting compression garment for air travel

Extremes of Temperature:

	•	Avoid exposure to extreme cold, which can be associated with rebound swelling, or chapping of skin
	•	Avoid prolonged (greater than 15 minutes) exposure to heat, particularly hot tubs and saunas
	•	Avoid placing limb in water temperature above 102 degree Fahrenheit (38.9 degrees Celsius)

 

Goodbye October, don’t let the door hit you in the ass

Marcia Strassman, 66, died of metastatic breast cancer this Pinktober.

October is over, and with it maybe some of the extra pink. Joan Lunden waved in the month on the Today Show, all over Rockefeller Centre Plaza with many, many bald-headed women in pink—and the network invited bald women, but only bald women, to join her (read Katherine’s post “Hey Joan Lunden: Stage IV Wants More! in her blog Ihatebreastcancer). Joan has triple negative breast cancer, my breast cancer. A woman whom I only knew through a common friend, but who gave me a wig in my first month of baldness, died this month of triple negative. She had 10 years of treatment.

Tessa came back from her 78-day visitor’s visa to Kostroma, Russia, and her biggest shock was cancer-shock—the pink, the news stories in every medium. In one of my guilty TV watches, The Real Housewives of New Jersey, Amber celebrated her five-year mark of surviving breast cancer with a topless photoshoot (some shots were of scars down her back). Netflix viewing this month included the last years of Nip/Tuck and Christian’s breast cancer, complete with his support group. Marcia Strassman, the stunning woman above, who played many roles including that of Julie on Welcome Back, Kotter, died this month of metastatic breast cancer. She was diagnosed in 2007 with Stage IV invasive lobular carcinoma that had already spread to her bones. Drug therapy, then a lumpectomy, then more drugs. She was on treatment for seven years before breast cancer killed her. She was fully public with her metastatic disease, speaking and fundraising and showing that people do live with cancer until it finally takes them. Pink is so freaking perky for a disease that grinds you down until you stop altogether.

Last post, I said I would post the writings of others who say how I feel about pink October. This is the best one: “I survived breast cancer, but I hate Breast Cancer Awareness Month,” by Leah Nurik in The Washington Post.  I thank the Cancer Curmudgeon and her blog Anotheronewiththecancer for finding it and passing it on.

 

A view of Kostroma, Russia, taken by Yuriy Chulkov, not Tessa. I’ll post her photos in a later entry.

I have almost finished writing the thank-you notes for donations in my father’s name. We had Thanksgiving dinner in Stratford, the first of a whole year of “firsts” without Dad. When it came to siting at the table, there was his chair at one end, opposite my mother at the other end, and as the eldest child, I guessed that I should sit in his place. I had never sat at the end of that table. When we were all seated, it was me who said we should say grace, and then I said we should hold hands. I thought Juli might choke, but at the time, it seemed the right thing to do. I woke three times that night crying and screaming, but couldn’t remember a single dream.

I started a 10-week exercise program—Healthy Steps Lebed Method at Princess Margaret/Toronto General—that concentrates on the lymphatic system. I had 15 lymph nodes removed during my partial mastectomy, so that lymphatic system needs to work as smoothly as possible. All of these classes have flattened me—each Wednesday I have slept from 4 or 5 in the afternoon straight through to the next morning. It doesn’t say much about my fitness! Fatigue is my enemy now, as is chemo brain, or chemotherapy-related cognitive dysfunction, as a seminar I attended calls it. Tessa attended with me. She had thought we would get the skinny on this condition at the seminar, but we really just got an excellent overview on what I have already experienced.

Lonnnnngest caaaption in my blog thus far: A map shows the front of the brain with bright yellow and lime green hues predominating along the left half of the brain medially. This region corresponds to the left superior medial frontal gyrus, the part of the brain known for its role in prioritizing thoughts and actions. The bright yellow and lime green hues in the left superior medial frontal gyrus sharply contrast the cool blue hues in the same region on the right side. The brain uses glucose as its energy supply. The bright colours represent large decreases in glucose usage by the brain. Chemotherapy can induce changes in the brain that may affect concentration and memory, according to a study presented today at the annual meeting of the Radiological Society of North America (RSNA). Using positron emission tomography combined with computed tomography (PET/CT), researchers were able to detect physiological evidence of chemo brain, a common side effect in patients undergoing chemotherapy for cancer treatment. http://www2.rsna.org/timssnet/Media/pressreleases/pr_target.cfm?id=629

Wait and see. That’s what my oncologist and psychiatrist say. Like just about everything in life, that’s easier said than done. Right now, I am waiting on the results of my first mammogram since last November. Next week I see my oncology surgeon one day (he will tell me how the mammogram looks) and my plastic surgeon on another (she will tell me how I’m proceeding to the next surgery—how things are settling in each breast, and how much smaller the right one is than the left one—to me the difference is very noticeable). Radiation has made the right one smaller and it continues to shrink even now, and it hurts all the time—my oncologist says “radiation is the gift that keeps on giving!” Well, as far as I’m concerned, it can back the fuck off. I really, really don’t want another operation there.

And I have started my own year of cancerversaries. When Graydon had leukaemia, the other mothers on my list serves and I called them crapversaries. October 21 was the one-year crapversary of finding my lumps under my right arm during a Monday-morning shower. I knew it was cancer, I told my GP it was, and off I went to start 11 weeks of testing to confirm my paranoid, but correct, self-diagnosis.

Last, but by no means least, November 5 is Bring Our Grade 9 Kids to Work Day, and I am not back at work yet. Luka might have mentioned this a week or more ago, and like anything that I do not write down several places, it slipped away until he produced a form that needs signing now. That’s next Wednesday. So, if you are reading this, live in the GTA, and can have Luka shadow you at work this Wednesday (I will cover lunch, deliver him and pick him up), please let me know ASAP here, or call me at home, or on my cell, or email me at jacquelynwv@yahoo.com. This is a huge program that has run since 199r, and has support nation-wide. Luka is clever and cute and will not show up looking like this unless you request it:

Seriously. He can come in his navy and grey Bishop Allen Academy uniform. Quite dashing. I know he’s secretly happy he won’t have to watch me edit for eight hours. He could do a half day if you can’t have him for a whole day. And he is skilled at coffee runs.

Appy-polly-loggies for the bolshy post.

 

 

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 ♥

Do you smell something burning?

This incredible hand-beaded bag—Genie’s New Hangout—by Sherry Serafini has nothing to do with this post about side effects on the skin from radiation treatments. Photos to illustrate the post would be gross. This beading is gorgeous. Better to look at, by a long shot! Find Sherry’s work at ww.serafinibeadedjewelry.com.

Oh yeah, that’s my skin. Ick.

When I started radiation, I obsessed over whether my skin would burn dark red or just sunburn red, maybe just pink, or not, in particular if I would end up with weeping, oozy, open sores. I heard about a full range of skin effects from women who’d been through it, from a light sunburn, to a full sunburn, to the dreaded weeping, oozy, open sores.

After three weeks, I had a rosy pinkiness to half of my chest, underarm and back. My weekly appointment with the radiology oncologist came up, and I told him how I was really worrying about the full five-week effect on my skin, even though I knew he couldn’t possibly predict what would happen with me. I said I would appreciate knowing even a rough percentage, based on all the breast cancer patients he sees, of women who end up with raw, open burns from their radiation. Overall, he said, maybe five per cent.

FIVE PER CENT!!! I was torturing myself over five per cent?!?! What a doofus. I stopped worrying.

Less than a week later the skin under my arm turned black. For a little while I thought it was because I wore a black top and the copious amounts of moisturizer I was applying picked up the black colour from it. Then the black crumbled off to reveal bright red, raw, oozy me. Of course, with triple negative, and no actual primary site, I would fall into the five per cent of women with weeping second-degree burns. My radiation oncologist prescribed a silver sulfadiazene cream (Flamazine) to prevent infection, and for the first time since May 22, I was glad my nerve endings didn’t work in my arm and underarm area—it feels creepy, but it doesn’t hurt. Thank God! Because the sight of it turned my stomach.

When I saw my plastic surgeon during the last week of radiation, undressed from the waist up—of course, I feel like a poorly paid stripper since last October, ripping off my tops, sweaters, bra and gown for almost anyone—she gingerly lifted up my right arm and said, “They fried you, sister!” She sure spoke the truth.

Radiation is finished now. The sleeping continues.