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!

Birthday wishes

My birthday this year was, well, low key. I felt like dirt.

No one could get in the mood.

The Tuesday before I had driven to Stratford to see my mum for a late Mother’s Day visit, and my sister Heidi for an early birthday visit. Tessa and the babies (they’re 3 years 2 months, but still seem like the babies to me) came along.

We met Mum in her backyard, where we sat down to a lunch of chili and uproarious entertainment from the babies. They kept Mum in stitches with neverending stories, chalk drawings of her, bug identification, flower picking and more storytelling.

Oh yeah, hanging out in the backyard with the babies, their mum, her mum and her mum: four generations in attendance!

After an hour, Mum was ready for the indoors and a cup of tea, so we took our leave and headed over to Heidi’s for what turned out to be a private shopping event. A friend of hers owns The Wardrobe, a Stratford institution for the coolest, most creative women’s clothing in town (since 1984!). Because of the lockdown, there was no in-person shopping, so Heidi arranged that I could pick out 10 looks online and her friend would drop them off so I could have a private shopping experience—trying clothes on, showing them off to Heidi, Patty (longtime Stratford friend and number one driver to many of my radiation appointments and all my chemos!), Tessa and the babies (who touched the fabric and said ooooohhh).

Me and the babies, Sasha birthday dress

The clothes were all beautiful—check out the inventory here and you’ll see what I mean. We settled on a Sasha dress in blue from Heidi, and a Penny tunic in aqua from me to me! The freedom of being able to try clothes on at one’s own pace, be the only person in the mirror, be free to try things on again for a second or third look—it felt like I belonged to the rich and famous set.

This is us back at my house, me in the Sasha dress from Heidi. So pretty!

A week later, four days into chemo, I felt like dirt and the birthday vibe just wasn’t there. You can’t will yourself to be happy, and the weight of having to do this whole cancer thing again, and put my kids and family members through it and question mortality and all that, well, it got away from all of us on the 31st. Except my mum, who sent me this email:

Sunday,  May 31st, 19xx was a sunny day in Toronto. I was up all night Saturday. L.Ray kept a record of every cramp. You were born around 7pm.Sunday. My  hibiscus has a big bloom today, for your birthday?? —xoxo

On my birthday I had a lot of texts and emails full of well wishes. I was a punk in the worst sense of the word, and responded to just about none of them. It took days for the rotten effects of the chemo to lift, and by then I felt embarrassed to write back and say sorry, so I just let them sit. Two weeks after my birthday Kate came over, I felt great. She brought me a present, the Los Angeles Times Harry & Meghan: Their American Life magazine. I love this stuff! Back in the day I was one of those people who stayed up all night in order to watch Lady Diana marry that jackass Prince Charles. The magazine has everything—the wedding, their arrival here, the Oprah interview, you name it.

Along with the magazine she gave me a card, a thick card. Upon opening it and seeing the gift cards inside, I was scrambling for the words to ask if Kate had robbed a Shoppers Drugmart gift card stand or won a lottery, but she jumped in and said “this is from more than just me” and went on to explain the cards were from my team members at work! Wow! I had in no way expected that, and it made me feel so valued, and yes, loved. Away from my actual birthday, with no pressure put on me by me, and no chemo crap, I felt happy. So. I had a different kind of birthday this year, with cancer, and lockdown, but with family and friends showing up for me.

I am lucky.

With stores opened up, I went to a sweet little shop on Dundas St. West, in The Junction, Underworld Lingerie (yes, that’s the name of the lingerie factory in Coronation Street, which I’ve been watching on and off since I lived in Oxford in 1986!). I bought this really pretty sunhat there, which has a good-sized black bow at the back, and this very breezy cotton dress with my gift cards, as well as something to do with my hair, which I will post about soon. Make no mistake, my hair is gone from my head, but in a craft project like no other, it has a second life.

Stay tuned!

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.

It just wasn’t enough to lose my wallet, now it’s my phone

I lost my phone two and a half weeks ago, somewhere between Costco at 4 p.m. on Monday and 2 p.m. the following day in my house. I went from Costco to my driveway into my house and didn’t leave. The kids and I (mostly me) have ripped the house apart. I’ve gone back to Costco and examined their lost and found drawers myself.

I didn’t back it up, of course. It held all my doctors and clinic appointments through all this cancer crap, including my questions and the doctors’ answers, unposted blog entries, ideas, notes of gifts received, people to thank, all of the photos I’ve taken of myself through before-chemo hair to short hair to bald to regrowth—only the “good” photos because I deleted the others, pics of the kids, little things like the progression of puzzles at the radiation suite as people put in their 15 minutes a day, plus all the text exchanges that I kept because some people are so comforting to me their texts calmed me months and months later when I would re-read them, and all my voice recordings of doctor meetings, my psychiatrist’s guided meditations and inner resource work with me, the lymphadema therapists working through 30 and 40 minute massages so I could do them myself at the same pace without forgetting what’s next, and all the phone numbers and addresses of every person, clinic, department, hospital, supplier, etc. I’ve been in contact with for more than the last two years. It is so overwhelming.

I have been having a world-class pity party for the last two and half weeks and I still feel like 30 pounds of crappy sausage in a 10-pound casing. No, that’s what my arm feels like in this sumer heat and humidity. I feel like a leaky, weepy old outdoor faucet.

I need to get over it and get a new phone. I should take it as a sign and start with a clean slate and no old cancer photos and cancer appointments and lists of cancer questions. But it seems far too hard.

Thank you for reading. If you’ve texted with me in the past, please send me one soon. I haven’t cancelled my service (no one has used the phone since I did the day I lost it) so when I get and activate a new one, the texts should just flow in and catch up. That’ll give me a start in building up my contacts list again. Sigh.

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

Nothing but….
Thank you to http://www.thetimeshareauthority.com/2012/12/27/good-news-you-are-due-a-well-deserved-timeshare-rental-vacation/ for the photo of my future.

 

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!

 

 

Is a recording contract next? or, Lebed Healthy-Steps isn’t just exercise

Me and the girls from my exercise class just belting one out. (This photo shows The Five DeMarco Sisters, Arlene DeMarco, centre, who performed with the likes of Frank Sinatra, Jerry Lewis , Ed Sullivan and Jackie Gleason. Photo courtesy Noah K. Murray/ The Star-Ledger)

 

Quick answer: no, but it’s certainly a start 😉

Every Wednesday since October I have pulled on yoga pants and top to take part in an exercise class. The last time I did that was before I had Tessa, pre-1991, and that was with my sister Heidi. We had joined Premier Fitness Clubs, and would go there and do weights and machines and a class and then sit in the parking lot and have a cigarette and wonder when we were going to start feeling that wonderful exercise “high.” I never did.

Now I drive downtown to Toronto General Hospital every Wednesday for an exercise class designed to increase lymphatic flow. I do not have a cigarette afterward—quit that for good in 1999—and I do feel good afterward. The Healthy-Steps Lebed Method exercise program was designed by two doctors and a dance movement therapist to heal and prevent complications from all cancers and chronic illnesses, with a special nod to those thrivers/survivors of  breast cancer and lymphedema (the dance-therapist co-creator has both, plus hep C). From very humble beginnings, the classes are now available in 900 locations around the world, and Toronto General Hospital is one of them.

I am not a joiner, a cheerleader or a dancer, and frankly, I really had to force myself to even sign up for this class, let alone take the elevator to the basement to find the room. It’s part of ELLICSR, the very name of which conjured up the taste of a nasty medicine. The full title is ELLICSR: Health, Wellness and Cancer Survivorship Centre (the acronym stands for Electronic Living Laboratory for Cancer Survivorship and Research) and after spending time in this warm, peaceful, multi-use space I think the long-life, changing-base-metal-into-gold definitions for elixir are more appropriate.

There are two certified Healthy-Steps instructors for the two weekly classes: Barbara Jenkins and Stephanie Phan. The Lebed organization announced a contest for a theme song last fall, and sent out guidelines for the song, including a long list of words and phrases that had to be in the song, all of them buzzwords for the exercise program: “smooth, slow resistance” and “Sherry, Mark and Joel”—not exactly lyrical on their own! Barbara took on the challenge of writing the song, and set it to the tune of the World War I marching song “Pack Up Your Troubles in Your Old Kit-Bag, and Smile, Smile, Smile.” She worked it out so the words perfectly fit the tune, then printed them out and took us through practices before and/or after class for weeks.

The women I exercise with are sweet, funny and very brave. They come from Etobicoke, North Toronto and downtown (Scarborough too, I’m sure) with headscarves, curly chemo hair, stylish short cuts and a few with beautiful full heads of hair. We blow bubbles—to increase deep breathing—do leg raises to work on balance, and do all manner of “jazz-hands” moves to get that lymphatic fluid moving past zapped lymph nodes and back into the system. Singing wasn’t exactly on the program description, but when you listen, stretch and dance to Adele, The Beatles and Beach Boys, UB40, ABBA, Pit Bull, Madonna and Stevie Wonder, what’s a WWI marching song? Barbara and Stephanie had us sing it a few times to get it recorded, and then sent it off to Lebed. The winning song would give the creator, host organizations (TGH and PMCC) and songstresses bragging rights for winning an international competition. The song will be played at Lebed functions and conferences, and be on the website—whether it will be our voices remains to be seen.

Weeks later, we got the word—we won!

Congrats to Barbara for doing all the work, and to Stephanie and all my fellow thrivers/survivors for hitting those high notes (or not) and laughing all the way through. And that was in the fall. This winter Barbara choreographed a dance for a second competition, this time to The Beach Boys’ Kokomo, and we did it on video with paper palm trees, beachwear, Hawaiian shirts, flowered skirts and flip-flops. It’s been like the summer camp I never attended. And it has been lots of fun. So much so it’s almost possible to forget, for a while, why we’re all here.

Found on huzzah-huzzah.tumblr.com

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

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

Posted on September 21, 2007 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. (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.

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.