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

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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…

 

 

It just wasn’t enough to lose my wallet, now it’s my phone

I lost my phone two and a half weeks ago, somewhere between Costco at 4 p.m. on Monday and 2 p.m. the following day in my house. I went from Costco to my driveway into my house and didn’t leave. The kids and I (mostly me) have ripped the house apart. I’ve gone back to Costco and examined their lost and found drawers myself.

I didn’t back it up, of course. It held all my doctors and clinic appointments through all this cancer crap, including my questions and the doctors’ answers, unposted blog entries, ideas, notes of gifts received, people to thank, all of the photos I’ve taken of myself through before-chemo hair to short hair to bald to regrowth—only the “good” photos because I deleted the others, pics of the kids, little things like the progression of puzzles at the radiation suite as people put in their 15 minutes a day, plus all the text exchanges that I kept because some people are so comforting to me their texts calmed me months and months later when I would re-read them, and all my voice recordings of doctor meetings, my psychiatrist’s guided meditations and inner resource work with me, the lymphadema therapists working through 30 and 40 minute massages so I could do them myself at the same pace without forgetting what’s next, and all the phone numbers and addresses of every person, clinic, department, hospital, supplier, etc. I’ve been in contact with for more than the last two years. It is so overwhelming.

I have been having a world-class pity party for the last two and half weeks and I still feel like 30 pounds of crappy sausage in a 10-pound casing. No, that’s what my arm feels like in this sumer heat and humidity. I feel like a leaky, weepy old outdoor faucet.

I need to get over it and get a new phone. I should take it as a sign and start with a clean slate and no old cancer photos and cancer appointments and lists of cancer questions. But it seems far too hard.

Thank you for reading. If you’ve texted with me in the past, please send me one soon. I haven’t cancelled my service (no one has used the phone since I did the day I lost it) so when I get and activate a new one, the texts should just flow in and catch up. That’ll give me a start in building up my contacts list again. Sigh.

Why am I having another surgery?

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This is a weird post to write. I’m hoping that since I am flipping out about my surgery in just over 48 hours, writing this could be cathartic, lessen some of my anxiety, give me some release.

Over the last few months I’ve had people ask me why I was going for a second surgery. I’m an open person, and a big believer in talking through your problems—a problem shared is a problem halved, that sort of thing. If I didn’t talk about things going on in my life, I think I would have imploded years ago. So when I would say that I had another surgery to go in my breast cancer saga, I was always prepared for the “what” question, and would respond with the whole “it’s called a revision, I had a partial mastectomy last year after chemo, but they call the recon a work in progress, radiation shrinks you, excess skin, scarring, balancing,” blah, blah, blah.

But the question that threw me each time was the “why?” “Why are you having another surgery?” “Aren’t you worried that something could go wrong? “Why not leave well enough alone?” “I wouldn’t let them near me with a scalpel again.” “They look fine to me.”

Why would these questions and comments bother me so much? I’m the one who says to talk everything over, get it out in the open. Maybe it’s because I’ve hit a tipping point where talking isn’t helping anymore. Maybe because I finally have to face I’m a vain person. If you’re a friend, or have been following my story, you’ll know how freaked out I was about losing my hair, butI still don’t think of that as vanity as much as it was about losing my identity and not recognizing myself. But really, is not wanting to have two differently sized breasts vanity? I’ve met wonderful women who walked away from their mastectomies and lumpectomies without any further surgeries and they’re satisfied, content, happy and thriving.

So here’s what I think, after much self-examination.

I want to do the surgery because I feel that cancer has taken away more than a year of my life, has left me with lymphedema of the arm, hand, breast and trunk, a lifelong sentence of wearing a compression sleeve and glove, the need for twice daily exercises and self-massage, restriction of movement, pain, loss of energy, craving for sleep that never satisfies, feeling that my memory will never work well again, and the crushing fear that the cancer will come back.

I intend to be here for a long, long time, and I want to take back as much as I can from cancer. I want my hair back to my shoulders, and I want breasts that match. I look at these things every single day, and while I’ll never get the original size back (nor would I want it back now that I’ve experienced life at this size), I do want to be able to fit into an off-the-shelf bra and not have to rearrange myself all day long. Or wear a prosthetic breast form.

I want to be able to buy a bra from La Senza or Victoria’s Secret and have it fit. I’d also like to be able to function on eight hours of sleep a day instead of 14, but small steps, small steps.

I have my surgery date!

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I received a call from my plastic surgeon’s secretary on Thursday with the date of my surgery: May 28. That had a few inconveniences attached to it—Tessa would be arriving back home from Russia the same evening; my boyfriend is planning to fly out May 29 to visit his sick father. But I don’t want to get caught in summer vacation roulette at the hospital, so it was a go. Pre-op on May 20.

I started the 27 Day Cleaning Countdown for the house. After this surgery I’ve been told there is no lifting, bending, raising arms, etc. With my current level of fatigue I achieve very little housecleaning, and the place has slid downhill. Anything that isn’t cleaned and sorted by May 27 will have to wait until mid-July, So Friday it was sort out the laundry room. 13 hours of sleep. Saturday was clean out front hall closet, sort, toss or Goodwill all footwear clear and wash front hall floor and baseboards, dust furniture.  3 hour nap; 13.5 hours of sleep. Sunday: 6 hours 15 minutes of sorting the garage, more laundry, cleaned out two kitchen cupboards. 3 hour nap; 2 hour nap, 9,5 hour sleep. Monday: Empty drawers in my room, pack some winter sweaters, reorganize upstairs linen closet, clean out and organize shelving unit in upper hall. 2 hour nap, 3.5 hour map, 9 hour sleep. I was channeling my anxiety over the surgery into cleaning, but it wasn’t doing anything about the fatigue. My house is looking better, and if I last three weeks, I’m sure the house would look houseguest-ready.

Then on Tuesday, the lovely secretary called with the offer to jump the surgery ahead two full weeks to May 14. Pros: My anxiety/dread/fear would be over two works earlier. Tessa will be spared having to be my personal support worker. My boyfriend will be here to take care of me. Cons: not enough time to clean house. No time to get the car fixed. Must have Luka’s birthday party this weekend. No travelling to Stratford for Mother’s Day. I’m still scared.

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So it’s on for Thursday, stay over one night, home on Friday. Preop is Tuesday.

Now I really need meditation and inner resources as  I climb clean the walls!

Stalled

 

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

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)

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)

 

And the hits just keep on coming!

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I got some excellent news when I saw my oncology surgeon week before last. The mammogram was fine, nothing to report there. Great news! I really wasn’t stressing out about those results since no tests, not mammograms or ultrasounds or MRIs ever found any cancer in my breasts (or anywhere else) in the first place.

He poked and palpated, and I said ow, oooh, that hurts, that’s really tender. He seemed mildly surprised. Then I asked him if I should be asking him, or my plastic surgeon, or my oncologist, or even my radiology oncologist, why my hand hurt so much, and why the length of my arm on the inside, and my upper arm and breast, still hurt so much. I explained that I’ve had arthritis in my wrists and thumbs for years, when he said, “Give me your other arm.” He held them both to the front, examined them briefly and—here’s the crap news—said, “You have lymphedema. I’ll refer you to the Lymphedema Clinic at Princess Margaret.”

It was like something clamped my heart, stuffed it in a lead box and slammed the lid shut.

I had a very out-of-proportion fear of developing lymphedema from the very beginning of my cancer. My lymph nodes were the only evidence of my cancer, so I knew from very early on that they were stuffed with cancer, and they’d be going. Once the lymph nodes are removed—I had 15 taken out—the lymphatic fluid builds up in the limb—right arm for me—because the mechanism to keep it flowing out of the limb is gone.

I went to a seminar on lymphedema at Princess Margaret Hospital. I made copious notes, asked questions, asked questions about the answers. I was told that lymphedema happens to 20 to 30 per cent of women like me. I did every single thing suggested as a way to avoid and not trigger lymphedema, and I’ll list them in a later post.

I will have the condition for life. I have had a lot of time to train myself to put breast cancer as far back in my mind and heart as I can, so I can live without constant thoughts about it. But lymphedema? How can I ignore not seeing the knuckles in my right hand? I now have that rubber-band wrist that is so adorable in chubby babies, but is gross and unnatural on me. And the feeling of pain and tightness and fullness.

I held it together in his office, because it was the very end of the appointment. I cried in the change room, at the elevator, with my oncologist’s secretary (she was very sweet), then when I got to the car I just sat there and bawled. It was for me, a lifetime sentence of lymphedema, for triple negative breast cancer terror of metastases, for pain, for my dad… you name it, and I cried it out.

It will take the referral at least four weeks to get through the Lymphedema Clinic, so on the advice of my cancer navigator, I made an appointment with a registered lymphedema specialist at a physiotherapist office. That’ll be in two days. My man is coming with me to learn the different therapies, particularly the lymphatic massage. More on that after Thursday.

For now, it’s sleep I crave. I have been keeping track of my sleep hours in 24-hour cycles. Last Wednesday, Thursday and Friday it was 18 asleep/6 awake; 14/10; 16/8. Fatigue causes a lot of guilt, and I never feel rested. It’s a ripoff.