This has nothing to do with cancer, promise!

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My first foray into cutting hair was my boyfriend who, after hiding the punk haircut I gave him under a thick stocking cap for months, still eventually married me. Then I very cautiously cut a stray lock of hair or two off my children’s precious heads. Years later now, I know my limits. I did not cut off my hair after chemo started the job, and I will not cut the family dog’s hair either. After squeaking out an extra month and a half from his regular time for a clipping, I took this dog to BooBoo Pet Grooming:

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Clover, four and a half months after his last grooming, rocking that little woolly mammoth look.

Clover, four and a half months after his last grooming, rocking that tres-casual, little woolly mammoth look.

After working for literally HOURS like a dog on crack to get his bejewelled beribboned holiday hair topknot doodad OUT of his hair, this is what we have:

WTF?

WTF?

Which is constantly reminding me of this guy:

Sid, the sloth from Ice Age, and a movie we watch on the holidays just because it's cold in the movie, just like it is here.

Sid, the sloth from Ice Age, and a movie we watch on the holidays just because it’s cold in the movie, just like it is here.

But, the hair on his head is still longer than mine. Aw, I did write about cancer after all! Forgive me, please?

 

Lymphedema, my BFF, and I borrow clothes!!!

My new lymphedema compression sleeve and glove.

My new lymphedema compression sleeve and glove.

Well, I borrowed from her, but I’m lending her nothing.

  • Diagnosis: Nov 6, oncology surgeon Dr. Jory Simpson
  • Assessment and first treatment: Nov 20, Lindsay Davey, Toronto Physiotherapy
  • Compression garment measurement: Nov 24, Mancie at Mansueta
  • Drove to Toronto Physiotherapy to pick up original ADP papers: Nov 24
  • Drove to St. Michael’s Hospital for my oncologist Dr. Christine Brezden-Masley to sign off on ADP papers: Nov 24
  • Drove to St. Mike’s to pick up ADP papers, all signed: Nov 26 (thank you Adiba!)
  • Compression sleeve and glove fitted: Nov 27, Mancie

So, the sleeve and glove are over-the-counter, fitted to my measurements as closely as possible. The two pieces are $234.oo. Once the government agrees to my diagnosis and need for custom pieces, the government program with cover 75% of the cost. The custom stuff costs three or four times the over-the-counter stuff. Ug. That’s how I understand at least, so I will wait for the approval to order the custom set.

Getting it on in the shop was a breeze, getting it on at home was a horror. Tessa did it. If she wasn’t home, I don’t think I’d have got it on without tearing my left rotator cuff or something. It hurts like stink getting it on, but once it’s in place it feels fine. Good, in fact, like I’m doing something about this stupid condition.

And don’t they look fine?

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I am hanging on to one little scrap of vanity and self-care, since my hair is a wreck, eyebrows are sparse and my mood is crap. I can still paint these nails.

 

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.

Chemo nails

This post is out of order as far as my treatment goes: my fingernails were at their worst in March and April. They are back to their original state now. My toenails have not fared so well—I lost five of them, and while three of the little ones have entirely grown back, my two big toes are nailless, or rather, half-nailed (my control of the English language is not at its best now either, hmmm). I have a referral to chiropody to check out what’s going on there, but I digress.

I have always loved painting my nails, from Grade 7 on (prior to Grade 7, we had to line up at the back door of St. Aloyisus School, hands held out in front, palms down, so Mother Anacleta Miles could inspect our nails and their nakedness—even a hint of colourless nail polish meant you were sent home). It’s a tiny bit of prettiness, along with wearing rings, that I came to enjoy even more when working on a keyboard all day long (particularly because I never took typing at school, and still have to look at the keyboard to type, which means I really do see my nails a lot).

So when cancer was making me feel like I was out of control of just about everything, and I was spending a lot of time at home, I did my nails. One of the side effects of chemo is damage to nails, both finger and toe. As my nails got uglier to look at, I did then more often. It is even recommended to use colourless polish to keep nails strong. Two of the chemos that do the most damage are Taxol and Doxorubicin, both of which I took. Beau-Reil lines are lines that go across each nail, marking each high dose chemo like the rings of a tree, while koilonychia is the spooning of the nail. They turn yellow, crack, break, even pop or tear right off.

I took pics of my nails on their way to luckiness. I’ve been carrying those photos on my phone, and when I needed to make space on the phone, I found them. Hence, this post. Here goes (check out the middle finger—it was the first nail on each hand to go):

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After four of my eight rounds of chemo, this is what my nails looked like. Yech! But once the chemo drugs cleared out of my system, the nails that I lost grew back, and the ones that just broke and got gross grew out. I still have some lingering neuropathy in three fingertips on my right hand, but that’s it.

The jury is still out on the toenails, though. Fingernails grow three times faster than toenails, but the complete lack of nail growth on the tootsies has me happy that sandal weather is long gone. ;-)

Dad’s birthday

It’s another in the year of “firsts without Dad”—his birthday. First Thanksgiving, then Remembrance Day, then his birthday, the very next day. Tessa, Luka and I went grocery shopping and looked for a gingerbread cake, one he loved. We got the closest thing there was—a honey cake. Tessa bought me a present for Dad’s birthday: A round medallion with crystals on it, and four little single crystal charms with it. She said it could represent Dad and his four kids, or Dad, me and the three of them—Tessa, Graydon and Luka.

My Tessa is an old soul, and loves me so much. Her heart is so, so big. I’m afraid I’ve been taking up a lot of room in that heart since I got sick.

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Triple negative celeb cover: Joan Lunden on People

Even before the October pinkwashing began, our latest celebrity triple negative breast cancer patient was spreading her personal battle with TNBC on every newsstand with her People magazine cover. I was already dipping out of going to WalMart, Targé and malls of any kind (I’m completely creeped out by all the breast cancer pink on everything) when this appeared:

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It’s a far cry from this crazy hair day cover:

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I was all over Joan Lunden’s story in June when she revealed that she had been diagnosed with triple negative breast cancer. With only 15 to 20 per cent of women with breast cancer being diagnosed with triple negative, and with all the articles and stories and reports saying the prognosis for TNBC is poor, I latched on to her story. I checked her website, read her blog, etc. This cover was about her not waiting for her hair to fall out, but shaving her head. Yuk. I did that too. Either way, we were both still bald., and I still hate how I look.

But Joan was out and about all October, appearing with the WWE, Susan G. Komen, on the Today Show as a guest host for the first week of October (video of her and hundreds of breast cancer patients/survivors/warriors), so triple negative is getting some press, finally.

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