Lymphadema / lymphahell

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

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.

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...

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.

Results from the one-year goodbye-to-breasts-and-lymph-nodes-surgery appointment

 

Up on time, out the door on time, at the front door of St. Mike’s on time, thanks to Nik! Yay!

Appointment with Dr. Jory Simpson—kind, smart, compassionate, calming, handsome—went swimmingly. It’s all good.

Bloodwork before seeing my oncologist, Dr. Christine Brezden-Masley—kind, smart, compassionate, encouraging, beautiful—during which I tried to have a read on my Vitamin D level added in, only to find it costs $110 (!!! what?!?! all the forums I’m on say be sure to get your Vitamin D levels done! who pays for that? not OHIP, so I’ll just be taking my 2,000 IU daily and hope for the best). After plenty of “me time” in the waiting room (I had a laptop, but my arm and hand are killing me…. ), my appointment with her went really well too. See answers to my questions below.

  1. What’s with this damn fatigue, really? It is what it is. Your body went through catastrophic systemic trauma from the cancer itself, two months of testing, four months of dose dense chemo, operations and procedures, radiation—your body needs time to heal. Cut yourself a big break. Everyone is different.
  2. How much longer will my right breast keep shrinking? Likely done shrinking now, but ask your radiation oncologist (August 12).
  3. Will my finger- and toenails ever return to normal? Not sure (the Beau-Reil lines are gone, as is the koilonychia, but they are still lifting off the nail beds and every type of nail polish bubbles up off them. Yuck. I need to find a cancer-experienced manicurist. Anyone?)
  4. Can I have my radiation tattoos removed, and are there any special instructions? Don’t see why not, but ask your radiation oncologist (again, next appointment with him is August 12).
  5. When do the docs start counting survival? At diagnosis (the doctors’ or my self-diagnosis, which are eight weeks apart? of adenocarcinoma or the real deal—triple negative breast cancer? I’m taking the date of my first chemo treatment, since up until then I was doing nothing to fight the fu**er. Asterisks for my mother and mother-in-law 😉
  6. Is there anything special about survival with triple negative breast cancer that isn’t covered in the media? Nope. The first three years are the ones to beat for recurrence.
  7. Will I be getting any extra MRIs or scans since my tumour was never found? Nope. Just standard mammograms, next one in October. Which seems a bit nonsensical since no mammo or MRI or ultrasound or mastectomy found the tumour in the first place, and triple negative rarely comes back in breast tissue anyway.

So, Dr. Brezden gave all my head and neck lymph nodes a good manipulation, and we had a good chat about how difficult it is not to wait for the other shoe to drop. That’s my nagging feeling, which I am sure that having a hormone to take would allay, but who can say? My cancer is still in remission. I’ll see her again in December, Dr. Simpson, my oncology surgeon, in October.

Onward and upward, fatigue, chemobrain and lymphadema are the enemies of the moment now. Survivorship is the goal.

My life as a sloth: Now, this is funny!

That was a depressing post yesterday because I was, well, depressed. I did as I said I should, which was go look at cute animal videos, and found this one.

It is very cute, very funny, and pretty loaded with swear words and inappropriate things, but it made me howl with laughter, so here goes. You are forewarned.

 

True Facts about Sloths

 

I hope you liked it! The creator has many more: check him out on YouTube.

 

True facts about my status

I have a double-barrelled day of fun tomorrow: follow-up appointments with my oncology surgeon (one-year anniversary of my bilateral partial mastectomy and lymph node dissection) in the morning, and with my oncologist in the afternoon. I think there’s bloodwork in there, but no mammogram.

I’ve made a brief list of subjects to touch on:

  1. What’s with this damn fatigue, really?
  2. How much longer will my right breast keep shrinking?
  3. Will my finger- and toenails ever return to normal?
  4. Can I have my radiation tattoos removed, and are there any special instructions?
  5. When do the docs start counting survival?
  6. Is there anything special about survival with triple negative breast cancer that isn’t covered in the media?
  7. Will I be getting any extra MRIs or scans since my tumour was never found?

That’s all I’ve got right now. I’m not worried so far.

Wish me luck!

 

 

Seven years of blogging; or, have I really been doing this since 2007?

Wordpress's anniversary award

WordPress’s anniversary award

After more than a month of not posting (thank you to Tessa, daughter who even at 7,457 kilometres distance can still get me to do what I’m supposed to be doing but are not) I got a little award thingy in my blog mail—see above.

I am, I stress really am, working on my fatigue by sitting with it in guided meditation, and slippery brain, and self-massage with skin care and compression garments, and lymphatic openings and exercise. I know I said I would post more often, but I am exhausted, and I honestly don’t have anything interesting to say. Sorry Tessa.

So, for this post, which WordPress marks as an anniversary, I’m going to re-post my first entry to this blog. It had a far larger audience than I now have, because I was the Mom Blogger for Canadian Living magazine then, and eyes were reading from across the country. In this post I introduced myself to them:

 

Mom blog: All about Jacquelyn, the mom blogger

momblog1

Posted on  by itsbecauseisaidso

 

Hello. If you are reading this, you are the witness to the very first words of Canadianliving.com’s Mommy blogger. I am thrilled to be here – winning the reader poll to become the Mommy blogger is on my Top Ten List of Achievements, along with giving birth to my three incredible children, beating back my son’s leukemia, being nominated for a National Magazine Award, hanging on to a marriage for 19 years, quitting smoking, and the rest are state secrets.
THE REMAINING ITEMS ON MY TOP TEN LIST OF ACHIEVEMENTS
One thing you’ll learn about me is a secret is a secret. And a state secret is even more sacred. Don’t ask me how old I am.
LET ME INTRODUCE MYSELF
I am a mom (I prefer mum – my kids call me “Mummy” not “Mommy”) (when they’re not calling me Goofy-Head, or Boss, or Mummy-Dearest, or Slave-Girl-Mummy – this is only allowed from my six year old). I have three kids whom I am currently in negotiations with regarding their privacy, the parameters of their exposure in my blog, any possible compensation – this is where I start laughing hysterically and negotiations predictably break down. The cat, Angel, who is nothing like her name, lives here, as does Nibbles the hamster.
NIBBLES, OR SHOULD I SAY NIBBLED??
When things were getting very stressful in our home a couple of years ago, the kids thought it would be good to get a hamster. They actually thought it would be way better to get a dog, but I’m not that crazy. I was crazy enough to be talked into not one hamster, not two, not three, you get the idea. We had six hamsters at the height of our love-in, in five cages. We were told that sisters could live together in the same cage. Miss Jellybean and Princess Lou Lou shared a cage for quite a while, until one day we thought Jellybean had escaped. But how could she escape when the door was near impossible for us humans to open? Realization dawned ugly when we spied a wee half-square-inch of Jellybean-coloured fur. Hamstericide!
THIS IS TAKING A CREEEEEPY TURN
Suffice to say, Jellybeans’s piece of fur was carefully wrapped and boxed and shrink-wrapped and triple Ziploc-bagged and put in the freezer alongside Hammy Yu-Gi-Oh, Crazy Connie, Victor and Ooch, to wait for the spring thaw for appropriate internment. We got a few more hamsters, among them Nibbles and Bunny. Sisters. Did we put them in the same cage?DID WE PUT THEM IN THE SAME CAGE????
Read my next blog to find out.

Illustration courtesy of Juli Waller at www.grrrdesign.blogspot.com.

You can go here too: https://itsbecauseisaidso.wordpress.com/2007/09/21/canadian-livings-mom-blog/

 

Now, I will aim for an original post in less than a week. Promise. 😉

How am I mentally? Emotionally?

Rather than another avatar (I love my "Queen for a Day" one too much to ever change it), I have adopted a    mammalian mascot to represent me in my blog and at public functions. We share a personality profile, sleep pattern and ugly nails, among other things.

Rather than another avatar (I love my “Queen for a Day” one too much to ever change it), I have adopted a mammalian mascot to represent me in my blog and at public functions. We share a personality profile, sleep pattern and ugly nails, among other things. (Pic courtesy animal-kid.com)

Preamble

I say I will post more frequently in an attempt to engage in thinking, examining my thoughts, planning, typing, sourcing photos, etc., and so here is a little example. I started this post immediately after the “How am I physically?” post. That was Feb 13.  I came back to it at least four times. I had two appointments on Tuesday, one very emotional. I  fell asleep at 8 p.m., woke at 8 a.m. to make lunch and drive Luka to school, then went right back to bed at 8:50 and despite Tessa’s attempts to wake me, I missed my exercise class and a planned lunch after that. I couldn’t wake up, rouse, get my crap together, even when I knew I had to move. I slept until 4. I was asleep again between 7:30 and 10, then bedtime until 8 a.m. Fatigue sucks. Today I got Luka to school and I have a 1 p.m. appointment downtown. I am on my fourth cup of coffee. Now on with the post it took me six days to compose.

How am I mentally?

Lousy, low, lacking in confidence that my brain will recover and that I will stop craving/hating sleep. My brain feels as if it has turned to mush. I can’t get to the end of medical articles, the type of articles I eagerly inhaled even six months ago. Julia, work friend and fellow traveller in Cancerland, sent me a hopeful article a couple of weeks ago and I couldn’t even make sense of the illustrations, let alone the text.

What am I doing about it?

Reading. Doing soduko. Doing crosswords. Taping all appointments and playing them back so I can try to absorb more of what is said. Making lists. Beginning guided meditation for body sensing. Trying to find things that make me feel better, and do them.   This is actually very difficult, which I never would have believed before.

How am I doing emotionally?

Lousy, low, sad. Finding it very difficult to move forward. Three weeks ago I ran out of hot water while doing dishes around 6. I saw it as a sign to stop washing. After sleeping all evening in the living room, I couldn’t get any hot water while brushing my teeth. I took that as a sign to skip washing my face. In the morning, still no hot water. So at 11 I went to the basement to see if a switch was flipped and found the basement flooded from one side to the other, pouring down the floor drain, trapped everywhere around all the boxes and piles of laundry. A complete nightmare. The hot water tank rusted out and sprang a huge leak at the bottom, and just ran all night. We use the back half of the basement for storage, and while some things are in plastic boxes, lots weren’t. I had to throw away boxes of kids drawings and artwork, and photos, and magazines with my articles in them from pre-internet days. The living room and kitchen are still stacked with boxes and baskets and Christmas stuff, despite the fact I’ve been washing and sorting and tossing stuff every day. I would try to draw some parallels between the basement and my psyche, but it looks like too much work and I’ve no energy for it.

What am I doing about it?

Trying to get outside myself, meet up with a friend, do something nice for myself that doesn’t involve a trip to the Lindt outlet store or a bag of salt and vinegar chips. Got a new water heater. Make a little cleaning goal every day and try to do it.

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.

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!

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.

 

Stalled

 

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

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

Wow, it’s been a month and a half since I last posted, and it feels like a year ago or just a few days. December was a month of crappy anniversaries (my diagnosis, terrible holiday, start of my chemo, Graydon’s leukaemia diagnosis and three weeks inpatient, including Christmas) plus the first Christmas without my dad. My boyfriend was wiped out with flu, so we didn’t see each other for more than a week. I was exhausted, so at the last minute we didn’t go to Stratford on Christmas day like we always do—I slept most of the afternoon and evening, getting up on autopilot and frying chicken breasts for Christmas dinner—what a disgrace. We did go to Stratford Boxing Day and had lasagne made by my sister-in-law Sandra—delicious. We visited with my mum, Sandra, Ed and my nieces (in town for a couple of days), sisters Heidi and Juli, and my real BFF, Pam. She lost her dad a few months before I did, and then her mum died just before Christmas, so it was a sombre time in their lovely house. There were many, many occasions where drinking would have been the best answer ever, except the connection of alcohol consumption and breast cancer is so huge, I barely drink at all now. Maybe this is part of the problem—no lubricant for my rusty heart, brain and soul.

So it is now a full year since I started treatment. My testing, diagnosis and chasing the elusive-and-never-found tumour were in November and December 2013. Started chemo December 30. Had bilateral partial mastectomy May 22. 25 rounds of radiation in July and August. Severe burns and fatigue September and October. Lymphedema in right arm, hand, fingers, breast and trunk November, which will continue forever, and fatigue and brain fog (cancer-treatment-related cognitive dysfunction) that continue to make me not myself at all.

Is it my new normal? I HOPE TO GOD NOT!!!

I haven’t posted for six weeks because I was very down. I am now going to try to crawl on up out of my hole by doing things suggested by my cancer navigator over at St. Mike’s (Miriam Sweet-Goldstein, a very sweet—really, a totally appropriate adjective—and concerned woman who has walked the walk herself and now helps others to do the same; she takes the time to listen, and has great suggestions), and by Lorena and Stephanie in the Cancer Survivorship Clinical Program at Princess Margaret. I have not “bounced back” from my cancer side trip, and need to. Facing my mortality, the fear of recurrence, my lifelong lymphedema condition and now the changes that plague my energy level and brain have just been too much for me. For years and years, people who know me well and the misadventures of my family members have said to me “I don’t know how you do it every day!” Well, after this last year, I’m just not able to do it anymore, and I have to change that.

I’m taking on the commitment to post more often as a way to think and type and spend work-type time on the computer. So the posts will be smaller and more frequent.

Thank you for hanging in here with me—if you’re still reading, that is.

Say hello just to let me know? I’m hoping for four responses…