How’s the family?

Warmth in the Cold, by Katie M. Berggren, says it all for me and my three kid lets up here in the frozen north (tomorrow morning it'll be -30°C again!). Her paintings are all about motherhood, and all are available as prints—her website is http://kmberggren.com and this piece is here: http://shop.kmberggren.com/Warmth_In_The_Cold_mother_with_3_children_print_p/warmthinthecold.htm

Warmth in the Cold, by Katie M. Berggren, says it all for me and my three kidlets up here in the frozen north (tomorrow morning it’ll be -30°C again!). Her paintings are all about motherhood, and all are available as prints—her website is http://kmberggren.com and this piece is here: http://shop.kmberggren.com/Warmth_In_The_Cold_mother_with_3_children_print_p/warmthinthecold.htm

How’s the family?

Enough about me. Tessa is carrying four university courses from Queens University while living here at home. She is down to just 13 hours a week at the health-food-vitamin-supplement-organic-produce store Healthy Planet because the school workload is 46 hours per week, and she puts in more than that because of her need to succeed and her drive for perfection (very tough in an arts program). She has been saving every spare dime for the next trip to Russia. The official invitation has arrived, she has purchased her tickets, and she leaves in seven days. She had wanted to be home for my next surgery and recovery, which we all thought was going to be in January, but is now looking like May. I will be very lonely for her company, but true love cannot be denied (it can and has been delayed a lot already!) The miracle of distance education—she’ll be sitting exams for Queens University with a proctor somewhere in Kostroma in mid-May.

Graydon has started his second semester of a jewellery design course, specifically a casting course. He has a real design sense, and has mastered markers and airbrush and canvas and skateboards, so carving, modelling and casting is an excellent way to move into three-dimensional design. The fact he can wear his work is a major plus.

Luka continues in gymnastics, laying the foundation for a career in parkour. His instructor last week was a circus arts dude who makes his living at it, so that is inspiration. On the flip side, Luka survived his first week of exams in high school, and today he got the results and his first term marks. 86, 83 80 and 76, for an average of 81.25!!! This from a guy who for years despaired that he was “the stupidest one in the class.” Makes me wish that I had given in years sooner to medicating his diagnosed ADHD (Inattentive). It would have spared him years of feeling stupid. A case of mother is trying her best, not mother knows best.

How are the pets?

Clover is excellent. Princess and Dixie are excellent. Benny has back off running outside because of snow taller than he is and morning temps of -15 to -27. We all feel better when he stays in the house anyway. Angel, our 16-year-old Birman kitty, has had a visit to the vet and has early stage kidney failure. The vet says she’ll likely be manageable with a low-protein diet for six months or so, then she’ll show symptoms and go downhill. That’s very sad, and makes us all let her sit on us or our computers any time she wants, feed her butter off a spoon, get her fresh water ninety times a day. But she is in no pain and is still limber enough to leap onto the kitchen counter from the floor (in search of butter and fresher water). So we’ll buy her fancy food and pet her tons.

How is the car?

Wouldn’t turn over for 20 minutes after exercise class and an appointment at Princess Margaret. Graydon and his friend looked under the hood and found that my battery was missing all the caps that cover the openings to the fluid inside—battery acid or electrolyte or whatever that stuff is. I took the car to Canadian Tire. Dude came out in the parking lot, looked and said no way would they ever have removed those caps during my last oil change, and he’d never seen anything like that and they couldn’t fix it, but maybe I’d like to go back to the dealer and see if they could help.

Weird coincidence, I received a notice about a factory recall for my model and year of car for an airbag issue, so I got the factory recall and new battery, killing two trips to Mississauga with one drive.

How is the dishwasher?

Unusable. It’s as if someone pulled it out (it’s a built-in) and shoved it back in crooked, because the door wants to close half an inch to the left of where it is supposed to. It will close under great protest, so with the basement flood of January, I am NOT going to run the dishwasher and see what happens. It came with the house when we moved in back in 1992, and has worked for 23 years without even a service call, so it’s earned its retirement. We will now use it to hold the overflow of pasta pots and sauté pans that I’ve been stacking on the back burners of the stove for years.

Washing dishes by hand is not the best (read: is really bad) for my lymphedema, because it puts my hand in a forced down position (gravity pulls the fluid farther down my arm and fingers) and in hot water (it’s recommended to use water no hotter than 90°F or 32°C—that is blasphemy for washing dishes in my house, where the more scalding the water the cleaner the dishes). I’ve told the kids they’ll all be sharing the new joys of handwashing dishes, or they can do the arm and trunk massage on me to get rid of the extra pressure I’ll have if I do all the washing. We’ll see how that goes. Massaging mum’s arm, hand and fingers doesn’t sound so bad, but trunk??? That should flip them right out. I hope.

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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.

 

World Cancer Day. What?

WCD_15_Graphics_Lockup01_150ppi

“Now, more than ever there is a need for a global commitment to drive policy and implementation of what we already know to push the global fight against cancer to a whole new level. Action taken by every person, organization, and government will reduce the burden of cancer. On World Cancer Day, we must show that cancer is ‘Not Beyond Us’.

——Mary Gospodarowicz, UICC Immediate-Past President, Medical Director of the Princess Margaret Cancer Centre at the University Health Network

That quote is from one of my two cancer hospitals. When I heard that Wednesday was World Cancer Day, I thought I should do something. My very first reaction was to bake cookies—Valentine’s is around the corner, cookies are top of mind, and as a baker of fancy cookies, each special occasion has a cookie to go with it. But this one doesn’t really, aside from cookies with ribbons of various colours.

So I thought maybe I should go to an event and lend my support. Wednesdays I attend an exercise class that increases lymphatic drainage, so I am up, dressed and sociable for the most part, and tomorrow I am meeting an old friend for lunch after the class. I would be thrilled if we could get through the lunch by not even touching on cancer, let alone celebrate it or spread the good word. Time to look it up on the inter webs: World Cancer Day.

Not too many things to do to celebrate World Cancer Day. There’s a selfie contest, and the screening of N.E.D. , but I found a very real way to spread the word: my cancer IQ self-tests. I did the online test for breast cancer, just five minutes of my time, and guess what my risk for breast cancer was?

YOUR RISK: HIGHER THAN AVERAGE

An average Canadian woman’s risk of developing breast cancer in her lifetime is 1 in 9. Your risk for developing breast cancer is higher than most Canadian women. Use the information in your risk assessment report and talk to your doctor or nurse practitioner about what you can do to help reduce your risk.

Well, with the benefit of hindsight, you can see how accurate the scoring was on that one! They have quizzes for colorectal, lung and cervical cancer as well as breast.

So, sorry, no cookies to celebrate World Cancer Day, just some info to share that might save your life. Go figure…