Crappy news #1

I went to the Lymphedema Clinic at Princess Margaret August 23 to get the swelling in my feet and ankles looked at and rule out lymphedema. I have been having peripheral neuropathy in hands and feet, hand and foot syndrome pain, the summer has been a hot one, I had three kids and had ankle swelling with all three, so I wasn’t worried about lymphedema. I have it in my right arm, hand and trunk as a result of having all my axilla lymph nodes removed back in 2014 with my breast cancer, but this time around I only had two sentinel lymph nodes removed for biopsy.

I will spare you the blow-by-blow account of the examination, measuring and conversation, but all of a sudden I was being told about Coban bandaging, compression garments, compression hose—wait! It’s like you’re talking like I have lymphedema IN MY LEGS!! The therapist looked confused—like I didn’t know I had lymphedema in both legs. I didn’t—I was there to rule OUT lymphedema, not be told how to manage it.

I cried in the appointment, I cried in the car all the way home, I cried more at home. Both legs. I couldn’t comprehend it.

I was scheduled for a doppler ultrasound of both legs two days later to rule out blood clots, then I would have Coban bandaging of both legs, from toes to upper thigh, for six to eight weeks to get rid of as much excess lymph fluid as possible. The bandaging would be done in-home at first by a nurse, then I would go to a community health clinic every three or four days for bandaging.

I couldn’t believe it.

Good news about my lymphedema!

After less than two weeks of bandaging, these two areas of the ring finger on my right hand went numb and feeling didn’t come back. I was told to try taking the bandages off for three hours and see what happened. Nothing. Then, I was told to leave them off for eight hours. Nothing. So Dr. Chang, physiatrist with the Cancer Survivorship Centre at Princess Margaret, sent me for a nerve conduction study (a really freaky test I don’t hope to ever need again) that found it was a branch of the digital nerve, no idea why, no treatment, no reason for it to spread, keep going with the bandaging.

I have definitely been in a stall with this blog, and I blame it all on my lymphedema. And the fatigue, but this post is about the arm. For the last three months everything has been about my arm: it hurts, it burns, it feels bloated and heavy, it pinches, my hand cramps, my skin crawls, it’s numb, it’s pins and needles, etc., etc., ad nauseam. It won’t fit in any clothes, I can’t get comfortable at night, my fingertips freeze, bandaging takes forever, I AM NOT NOR EVER WILL BE AN RMT!

Two weeks ago, after almost three months of massaging, exercising, bandaging and Cobanning, I went from 24% to 11% more than the left arm. Even though I was told that 11% was good enough to move back into a sleeve, my thinking was that if I stopped bandaging at 11% and went to a sleeve, which only maintains your size, the next time I would flare it would be in addition to an arm that was already 11% larger than the other. My flare this summer was a 21% increase, so if next summer I increase the same amount, I’d be looking at an arm 32% larger than my unaffected one.

This may be a flawed theory, who knows, but it makes sense to me.

I was so deflated and hopeless and angry after that measuring that I began the most aggressive bandaging and pumping and massaging (deep and surface) I had the entire time. I stared at that arm with such hatred I think it might have shrivelled a little just from the evil eye.

Yesterday I went for measuring at the Survivorship Centre at Princess Margaret again and there I was—6%!!!

That’s good enough for me! I went to my fitter—Mansuetta—and got measured for a new custom sleeve and glove. The thought of putting these bandages into a bag and burying it in my closet has me giddy. Wearing a sleeve and a glove will feel like running naked through a sprinkler on a scorching summer afternoon to me (that’s me as a kid, not now, God forbid).

In four weeks I will have my new gear, just in time for my return to work.  I’m looking at starting a graduated schedule the first week of December. More of that soon.

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.

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.

Goodbye dishpan hands!

 

This was me, drowning in angst and ennui at the prospect of another two and a half hours of dishwashing. But now I know it’s easier to chunk big jobs into more manageable sizes, then I would look out the window and think to myself, “I only have eight 20-minute chunks of dishes to do. Yay!” Image is from http://www.preslaysa.com/how-to-clean-1/

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.