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.

Lymphadema / lymphahell

This is my impression of Dr. Zoidberg. It is my first bandaging for Stage II lymphadema.

Today was a typical day in my new normal: sleeping from 1 a.m. to 9 a.m. with many wakings due to lonely, mewing cat Benny, bad dreams and new screeching leg cramps; drifting in and out of sleep from 9 a.m. to noon; up until 5, then sleep until 9:30 when Tessa woke me to a fully prepared meal (made by her and Luka). That was a bonus and welcome treat. Now I will prepare for the new fun in my daily routine—bandaging my lymphadema arm.

The bandaged arm. Note my normal hand and how you can actually see bones there.

I had been managing the lymphadema in my right hand, arm, breast and trunk very well since it was diagnosed in November last year. Twice daily self MLD (manual lymphatic drainage) massage, meticulous skin care, wearing custom-made compression gloves and sleeves all day (only taken off when I was lying down) and participating in a specialized exercise program (Lebed Healthy Steps) kept my lymphadema at Stage I. After my May surgery it was difficult to do the self-massage and since I was on bed rest for two weeks I kept my arm elevated and massaged as well as I could. Unfortunately it wasn’t enough. In June my arm started hurting the same way it did when I was diagnosed, and I could see the swelling was increased. I saw Dr. Chang, a physiatrist at the Princess Margaret Lymphedema Clinic, and among other things we discussed—like this freaking fatigue that keeps hanging around—he referred me back to a lymphadema therapist for hand and arm measuring and the dreaded treatment for Stage II: bandaging.

This angle shows I actually still have all my fingers…

I thought massaging and wearing the compression sleeve and glove was a life sentence, but this fresh hell is far worse. My arm at Stage I was only 3-4% larger than my unaffected left arm, which was very good. Now my right arm is 13% larger, and feels gross and painful. Compression sleeves and gloves hold your arm and hand at the size they are. Only bandaging can hope to reduce the size of the arm and hand. Extended massage of the neck, arm, etc., etc., right down to the tops of my legs now has to happen twice a day, no more than an hour at a time. Then I do the bandaging: a stockinette over the entire arm, bandaging of all the fingers, thumb, hand and wrist, then wrapping of the whole thing in cotton padding, then wrapping with three different widths of compression bandages in specific patterns and directions, right up to the armpit. WITH ONE HAND!

Luka came to the first bandaging appointment and videotaped everything. Thank God for that, because even with his video I was barely able to figure out what to do once I got home. I do not know how anyone could have that one session and then be prepared to do this at home with only one hand to do everything. My brain was unable to absorb anything from the session. That is very alarming.

I have had three good sobbing cries while trying to do this bandaging. It is taking me almost an hour each time. Add the hour-long massaging before bandaging and I’m looking at four hours a day on my hand and arm. Try not feeling hopeless. I’m hoping the pity party on the Stage II is nearing its end and that I’ll be able to speed up the bandaging somewhat.

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 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)