Chemo N°6 still on hold

So, no chemo yesterday. My platelets are still tanked.

They were 70 when I had bloodwork for my sixth chemo. My doc said no, come back next week for repeat bloodwork and we’ll see where you are. Well where I was was 85. I thought “at least I’m going in the right direction” and my doc said “no chemo.”

She said I could wait another two weeks and we’ll check the levels again. I was unhappy, and she said there’s another option—we could just skip the last chemo and I will be finished with treatment. Ha! I was asking her at my last appointment if I could have an additional round of chemotherapy because of these delays, so there’s no way I’m going to cut and run. I want every last bit of the poison prescribed to me.

What can I do to boost my platelets? Nothing. And that adds to my frustration. I cut my finger by accident last week while washing dishes—while washing knives, to be accurate—and it was a little cut that took three days to fully close. That’s an indication of what could happen to my internal organs, so I see why healthy platelet counts are necessary to keep up the chemo. My marrow is tired, from this chemo and radiation, and, as my doc and nurses have pointed out, from my previous chemo and radiation. I found that scary, that seven years later my marrow still carries the damage of my earlier treatment. Ug.

Thorn

So the delay, if my bloodwork is good enough for chemo in two weeks, means I’ll have had six weeks between rounds, not best practice, not on my protocol.

Rose

I am going in on Monday (in two days) to the lymphedema clinic at Princess Margaret to be assessed for lymphedema in my feet, ankles and legs. While the burning, pain, swelling and tightness have been major probs, thinking they will go away when I finish treatment is what has made the situation bearable. When I asked at clinic if there was any chance it was actually lymphedema and not chemo side effects, I got a referral lickety-split.

What’s the rose? That I’ll be getting answers in less than 48 hours!

Roses are red, violets are blue….

These are flowers sent by Kelly, an amazing friend for almost 30 years (holy waaa! such a long time!!). She came to one of my breast cancer chemo days back at St. Mike’s, and we had a great time. This time around, with COVID, vaccines and basically no visitors allowed at the hospital, she has sent me flowers every month, and they have focused my attention on their beauty, colour, scent and reminded me that there are many beautiful things going on around me. It is easy to be mindful when something this gorgeous is right in front of you. And yes, I do move them from room to room to get maximum effect. Thank you Kelly!

Pinktober, and mammogram results tomorrow

Plastic surgeons have some of the prettiest and goriest websites around. Thank you to Calgary plastic surgeon Dr. Haugrud for this very pretty visual (http://markhaugrud.com/procedures/breast-reconstruction/)

I haven’t posted anything this Pinktober about how uncomfortable the entire month of October feels for me. I like to not think about my breast cancer. The longer I can go NOT thinking about my breast cancer, the better. With most of my waking thoughts on my flipping lymphoarm (made up word) I succeeded in not thinking about breast cancer a lot over the last three and a half months, but the arrival of October and the pink ribbons and walks and sponsorships and fundraisers make it impossible to not get slammed in face with breast cancer constantly. Which is the cause of layers of discomfort: I think about breast cancer far more (bad), but all these things raise money for breast cancer (good) but the money goes all over the place and little of it goes to my cancer (triple negative) (bad), but I should be thankful for the awareness it raises (good) even if companies profit off the suffering and potential suffering of patients and family and friends (bad).

Ug. Suffice to to say I’ll be very happy to see Halloween night. We decorated the house tonight in the rain. I’ll post a pic on the 31st.

Two weeks ago I was back at St. Michael’s for a mammogram. My bandaged arm was too big to fit through the armhole of the hospital gown, so I went toga-style with one shoulder covered and the other bare. I sat in the rectangular room, chairs against all four walls, for a few minutes like that and then another patient came over with a second gown and put it around my shoulders. Why didn’t I think of that? What a nice gesture.

Into the scan room, and four uncomfortable squishings later the technician says “Let’s take a look at these,” so I follow her and we look at the scans and she says, “Hhhmm, the radiologist isn’t going to like the look of that one. I’m sorry, but we’re going to have to do another one. I’ll try to be really fast.” “Oh, I’m not in any hurry,” I said, and she responded, “This one will hurt though, so I’ll try to be really, really fast.” My right breast has all the radiated tissue plus the scarring from surgery and biopsies, so I guess it wasn’t clear enough (or she didn’t correct me when I guessed that was the reason for the fifth scan).

And she wasn’t kidding. It hurt so much (sorry to say that, but might as well be honest), that tears literally popped from my eyes and I found it difficult to stay standing. I was gasping and gulping and crying all the way through the goodbyes and good lucks and sorries to the change room, where I stayed for a full five minutes until I could get a grip again. It was the freakiest thing. And it hurt until the next day.

So it’s been two weeks of Pinktober waiting for the results of my mammogram. I feel like I’m right on theme. I am confident there will not be bad news when I see my surgical oncologist, Dr. Jory Simpson, who could definitely play himself in the film version, because if the scans had shown something someone would have called me in before now. My anxiety level is fluctuating between a 1 and an 8, more in the lower end.

I did my bandaging too enthusiastically tonight because I can no longer feel anything but pins and needles. That means it all comes off and I start over again. I hate this. I can’t wait for my sleeve to come in.

Back to the bandaging

Happy International Coffee Day (http://internationalcoffeeday.org), a day I missed because of sloth-type behaviour of avoiding all forms of media for a couple of days. On International Coffee Day my first coffee was poured down the drain because the organic milk I poured into it was baaaaad. The 2 p.m. cup also went down the drain because Graydon mistook the unsweetened almond milk for grass-fed cow’s milk. I can’t stand almond milk in coffee or tea or me. Coffee is truly my drug of necessity—to say no to the constant call of my bed I drink a large coffee every hour for the first five or six hours of the day. That is the only way to beat my fatigue so far. This photo is what my days feel like, courtesy of meridian.com.

Being out of bandaging lasted for five days, then back into the Coban bandaging done by Lisa, my physiotherapist. My skin was all cleared up with just Polysporin. Dry blisters and old skin (ew!) meant it was OK to bandage again. I chose to go with Coban again because the trade off is worth it—$32 not covered by OHIP or my work health insurance plan, but it means I don’t have to do that ungodly bandaging or massage. It does mean I have to do mad lymphatic system pumping exercises and diaphramatic breathing (very hard on my scrambled brain to be doing movements, counting and regulating my breathing the whole time) (and embarrassing to have to admit that that combination of doing three things simultaneously is hard!!!). Since the Coban bandages have absolutely no stretch, when one gets the lymphatic system really pumping there is nowhere for the excess lymphatic fluid to go except out of the arm—or that’s the plan anyway.

I see Lisa tomorrow for the cutting off of the bandages and measuring to see if I’ve made more progress. Then, on Tuesday I go back to the Lymphedema Clinic at Princess Margaret and have the major measurements done to see how the arm and hand compare to my pre-flareup size. I’m not sure what the goal is according to them. According to me I want to be right back to the pre-flare measurements, so when I flare up again (keeping in mind that this is a chronic lifelong condition and I will flare again) it will be on my original lymphedema size, not on top of a new, bigger normal. If I reduce to, say, 6% larger than my left arm and then I flare again, it’ll be on a bigger arm. At that rate, my arm will just swell and swell and harden and harden. I picture a Violet Beauregarde scenario, and it isn’t pretty.

First day out of bandages in 8 1/2 weeks

Not my hands on the keyboard, but a pic from 3M showing the coban bandaging I have been in lately

Aaaaahhhhhhhh. After self-bandaging from July 28 twice a day, every day and every night, and the new therapist-applied coban bandaging, today is the first day I have been able to return to a compression sleeve. I can bend my arm! Touch the side of my face and neck with my right hand! Eat with a fork in my right hand and not lose half the food!

The reason why I’m back in a compression sleeve is because my skin is degrading under the coban bandages so I need to wear something breathable while I apply Polysporin and clean the areas and keep them from getting infected. As soon as the skin heals, or starts to, I’ll be back in the bandages (which ones I don’t know yet).

For this period of CDT (complete decongestive therapy) I have seen three different therapists—an osteopath, a massage therapist (Lucy) and a physiotherapist (Lisa). Lucy and Lisa both practice at Toronto Physiotherapy, the first place I went with my lymphedema after diagnosis and an assessment at Princess Margaret’s Lymphedema Clinic.  My first therapist at Toronto Physiotherapy, last fall, was Lindsay (weirdly alliterative, yes?), the director there. I have had six professional drainage massages since this flare-up began, and blown my health coverage reimbursement for the year. Now I’ll have to cut into my spa budget or wine-cellar allowance to pay for massages (I wish!).

The difference in my arm between what I can do and what a trained therapist can do is night and day. They do 135 hours of training for certification in lymphatic drainage massage; I received 80 minutes. It is ridiculous that this condition doesn’t qualify for OHIP-covered services. My one-handed effort at this type of massage is ludicrous. I’ve been doing it for 10 months, and I don’t think I’m going to get any better at it. I talk to my therapists, question them, get my kids to videotape the sessions, watch every YouTube video on lymphatic massage, and still, my left hand reaching across my body is a poor substitute for a trained therapist.

Complain, complain.

The sleeve I’m in today allows my skin to breathe so the degradation will stop. But as that happens, I can almost feel my arm filling back up with this gross fluid. It’s one of those “damned if you do, damned if you don’t” situations—in the bandages I can exercise my arm and hand and force the fluid up the arm, but my skin gets gross and blistered and red; let the skin heal and my arm swells back up. It sucks.

Complain, complain, again.

But right now I can bring a spoon up to my face and eat with my right hand, brush my teeth with my right hand, and I actually attempted eye liner today. So I am enjoying myself!

 

Lymphadema / lymphahell revise

You would never believe how long it took me to do this fishtail bandaging. It was far easier to do a fishtail braid on my hair! When I had hair long enough to braid, that is…

(This is a long somewhat whiny post, now that I read it, so apologies upfront)

I went back to the Lymphadema Clinic at Princess Margaret Tuesday for a follow-up on the art of bandaging. Tessa and Luka accompanied me this time, Tessa to film and Luka to do some hands-on bandaging. One of the many frustrating things about this stage of lymphadema is that when the hospital therapists show you how to do the required  bandaging, they do it with their two hands. Then you go home and have to bandage your arm with one hand. In my case, my dominant hand is the one with the lymphadema, so I am using my not-very-adept left hand, which makes it even slower and more frustrating. So, Luka agreed to come and be the RMT-in-training.

This is not new—Luka coming with me to appointments—when Tessa returned to Russia in March, Luka stepped in as my right-hand when it came to appointments. He had a break when Tessa returned at the end of May, but since she is back to Russia again first thing in September, Luka has been my partner in this new lymphadema bandaging debacle. He came and filmed the first bandaging appointment and demonstration at the hospital, then came and filmed a one-hour manual lymphatic drainage massage with an RMT and osteopath last Saturday. Michel Moya-Mora, at the Wellness Institute on Royal York Road, gave me an excellent two-handed massage, and talked all the way through, telling Luka how to angle the shots, and instructing me on what he was doing and why. Such a luxury!

At Princess Margaret I learned that my swelling wasn’t at 13% more than my left arm but at 23%. Ug. I thought my right arm and hand looked HUGE, but when I heard 13% I thought “Well, it looks really puffy to me but 13%, that’s not so bad.” Who knows what percentages look like when you’re looking at your own appendages? But hearing the value is 23% made me think “Holy crap, I knew this was serious.”

Pam, the lymphadema therapist I met with, was very sweet. I’d met her before in the clinic, but with all the women she must meet there I was surprised she remembered me. I told her I was freaked by the increase in the size of my arm and the hardness of the flesh now that I was bandaging. She made suggestions, changed me from soft cotton padding to the thick, firm, open cell foam I’m using now. I asked her for truths about my condition, not gentle platitudes, and she gave them to me.

Bandaging is a pain, but it is he only way to reduce the size of the affected arm. I can and must do self maunal lymphatic drain massage twice a day, for an hour. That involves stimulating lymph nodes in the head, neck, shoulder, chest, back, armpits, trunk and groin, in addition to massage to move the fluid in the fingers, hand, arm, shoulder, back, chest, breast and trunk.

Then, in this order:

1. cotton stockingette on full length of arm

2. bandaging of all fingers, thmb, hand and writst with two rolls of two-inch gauze

3. channelled foam padding between the fingers and on the back of the hand

4. cotton stockingette over the hand

5. strip of fine four-inch foam around the hand twice, above and below the thumb

6. wrap four-inch-wide, four-centimetre thick open-cell foam all the way up the arm

7. 6-cm short-stretch Compilon bandage over te hand at least eight or nine layers, then up the forearm until it runs out

8. the 8-cm wide bandage from wrist to armpit

9. then 10-cm wide bandage from wrist to armpit

10. then tape securely and go for a nap. Sometimes I do—it’s a tiring wrestling match.

This bandaging has yet to go smoothly on the first go. I do it too tight and can’t feel my fingers by the time on the second short-stretch bandage, or worse, the tingling starts 10 minutes after I’ve finished the whole thing, which means I have to unwrap EVERYTHING and start fresh. There’s no such thing as leaving the arm wrapped and finessing the hand—it starts with the hand. I drop rolls of bandage and gauze, and of course they unroll across the floor.

The lymph node and arm hand massage takes an hour. The bandaging, so far, takes at least an hour when you factor in the fact I must re-roll all the gauze and bandages before applying them.

That’s four hours a day!

I am elevating my arm above the level of my heart twice a day for an hour at a time, letting gravity do its part to lessen the swelling.

Through my work insurance I can get five hours of professional lymphatic drainage massage, so I’m planning to blow that in the next two to three months to try and get this arm down and into the sleeve and glove I hated so much before.

Now I think wistfully of my sleeve and glove. It’s like Joni Mitchell’s Big Yellow Taxi: you don’t know what you’ve  got til it’s gone.

Onward and upward.

My surgery was a success!

 

I am evil and will surely go to Hell, but when this photo popped up while I was researching “successful surgery” I knew I had to use it. In the photo, Dr. Donald A. McCain, Chief, Division of Surgical Oncology Hackensack University Medical Center, Assistant Clinical Professor of Surgery UMDNJ; I’m not sure what type of tumour that is, but It WASN’T mine!! Dr. McCain does more than 20 Whipple procedures a year, which means he’s up there with the best of them. This photo is from http://drdonaldmccain.com/or-cases/live-surgery-images/successful-surgery-ii/

 

Now THIS says successful surgery! And this photo is from The Elite Trainer, Toronto’s own (well, Richmond Hill’s own now, but he started in Toronto) John Paul Catanzaro. He has been in the fitness biz for 20 years, and been published in 25+ mags and web sites, speaks everywhere, has two books, two DVDs and his own private training facility. Photo: http://theelitetrainer.com/ index.cfmt=Blog&pi=BLOG&blid=185

I of course never doubted for a minute that it wouldn’t be—I doubted it for days, mostly in the what-if-I-die-on-the-table? vein, or far, far worse, what-if-she-cuts-in-there-and-there’s-more-cancer?

So neither of those things happened. My surgery was around 10:45, and I was in recovery a long time. I came up to my room about 6, texted a few friends that I was getting “excellent Spain meds” then watched at least three episodes of American Justice on my phone while I made blue bracelets.  I had a feeling it would take a while for me to calm down after I came to, and for them to find the right drugs for me (I hate pain, and will work hard to find the correct relief). Once my wonder-nurse introduced fentanyl into the IV, I was pain free, alert, even lighthearted. If you could see what I could see under my gown, you could estimate how much drug was required to get that effect!

I actually took some photos of my left breast and the incredible sculptural work my surgeon had wrought there—skin, tissue, black thread, wound up gauze, a clear cup—this is what I’d been hounding my surgeon for, and there it was. OMG is all I can say.

••• If you’re considering or have started reconstruction, and you have any questions, please mail me privately and we can talk about anything. The fact that my grandpa and grandma-in-law, and many colleagues, some neighbours, read this blog occasionally means that I think the details of my surgery are simply TMI for this blog. Seriously, I have photos and lots of experiences to share with any sister going through this, triple negative or not! •••

All night long I wandered in and out of sleep, lulled and awakened in turn by my sequential compression booties, fabulous boots that wrapped me up to my knees and went on all night sucking and blowing and making me think more than once that I was safely at home with Dixie, or Princess or Benny or Angel rubbing hard against my leg, almost lifting it off the bed looking for the best place to stretch out. I did fantasize about having a sequential hand-arm-shoulder-breast-and-trunk contraption that I could wear all night and never have to self-massage or wear my yucky sleeve and glove again though…

I was discharged the next morning, exactly at 11, with drains dangling. It was a bit of déjà vu from May 23, 2014 or I guess not, since it was almost identical, except for the compression sleeve and glove. By the way, I wore the sleeve and glove through pre-op and the actual surgery, explaining to the nurses and docs that it was my way of saying DON’T TOUCH THIS ARM! Obviously, they’ve seen it before.

I took it very, very easy this first week at home. I did not do that first time around—I was more like Hey! bilateral partial mastectomy? of course I can do groceries!

This post is long enough. I’ll write shortly about my follow-up.

How am I physically?

I know a post ago I said that I was going to try writing more often and see if that helps with my outlook, and it’s been a slow start (better than a no start, I tell the dog). So tonight I’m going to give my state of the physical address.

My right hand with lymphedema, in need of major massage to force all that fluid back up my arm, over and across the right shoulder and down into the neck area where lots of lymph nodes are hanging out, looking for work, I hope.

When my hand is like this, it hurts a lot!

So, how am I physically?

I am managing my hand, arm and trunk lymphedema with twice daily self-massage. Graydon and Tessa each came to an instructional session at Princess Margaret’s Survivorship Program for the decongestive massage and filmed it each time. Pam was the therapist both times, and she was amazingly patient and accommodating about filming. I have found that it really helps to have the video when I do the massage myself, both for pacing and remembering to do all the parts of the massage routine. I am taking a second session of Lebed Method Healthy Steps exercise classes at Toronto General Hospital, designed for opening up and promoting lymphatic drainage through the whole body, which I need to keep the swelling down in my right fingers, hand, arm and trunk, and reroute that fluid to other lymph nodes. I try to do a modified (shortened) version every day at home—the days I do it I feel better in the arm and chest. I need to do aerobic exercise, but am having a hard time keeping that up five times a week.

The fatigue continues, and is the most frustrating thing I face on a daily basis. I didn’t “believe” in fatigue before, now I believe it but I hate it. Fatigue usually lifts a few months after radiation, but I’m five months out from radiation and still bagged. After seeing my psychiatrist last week, and running two more errands, I slept from 4 p.m. to 10 a.m. the next day. 18 hours. On days I have to get out and do stuff, I need to drink a large coffee every hour or so until I am done, then it’s water. If I don’t drink coffee, by 10:30 or 11 a.m., whether I have exercised or not, I need to sleep. That sleep can be two hours or six, and if there isn’t a huge reason to get up, I can nap all evening and then sleep all night, punctuated by my mind waking up to rattle through bad thoughts for 10 minutes or two hours. If I can will myself back to sleep, great. If not, I lie there with a body that can’t get up.

I have breast surgery coming up. The right side has continued to shrink thanks to the radiation, the gift that keeps on giving. The plastic surgeon left my right breast a fair bit larger than the left after my surgery, because radiation hardens and shrinks the breast tissue. That way, depending on the shrinkage, the two breasts might end up close in size. No luck in my case. They are now at least two cup sizes different, which means no bra can possibly fit. And the difference is definitely noticeable by more people than just me. I have thought about going with a prosthesis, but there are enough other things that need to be fixed and rejigged that surgery is planned. I’ve had the surgical consult, reviewed expectations, procedures, recovery. Now I wait for an appointment to sign my consent papers, and then I’ll be scheduled. I don’t want surgery, but this damned cancer has screwed me over enough already, I don’t need to see more evidence of it every time I look at myself.

Miscellaneous items: My hair is coming in like I always thought it would if it was ever short—curly at first, now wavy, just as thick as before, texture still silky. So, except for the natural dirty, dirty dishwater blond colour, it’s not so bad. I still want my long, blond highlighted coif, so I am not trimming it in any way—just keep it growing! My right breast hurts all the time inside. On the outside, there is no sensation, and I still have no sensation under my arm and around to the back. That makes the massage feel really freaky—my left hand knows what it’s doing, but my right arm can’t report back. Weird. My toe nails are not growing back. This will start panicking me soon, because I go barefoot from May to October, and those toes look like photos in a medical journal. I can’t even paint them, because there are no nails! Fingernails are much better, as in I have nails on all ten digits, but they don’t adhere to the nail bed very well yet, so lift up a lot, have bubbles and ridges in the nails themselves, and peel and split a lot. But, I can paint them, so it’s OK.

 

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

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?

 

 

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)

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!

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.