My own private saint is too busy for caregiver fatigue

This is Saint Nikolai Velimirovich; my saint Nikolay looks considerably younger, has no facial hair, and never wears vestments; from http://orthodoxchurchquotes.com/2014/11/25/st-nikolai-velimirovich-technology-is-deaf-mute-and-unanswering/

This is Saint Nikolai Velimirovich; my saint Nikolay looks considerably younger, has no facial hair, and never wears vestments; from http://orthodoxchurchquotes.com/2014/11/25/st-nikolai-velimirovich-technology-is-deaf-mute-and-unanswering/

I took it very, very easy this first post-surgical week at home. I did not do that first time around—I was more like Hey! bilateral partial mastectomy? of course I can do groceries!

This time, with Tessa, my primary caregiver for the last 15 months in Russia, my man has stayed with me around the clock since Wednesday night (seven days!), making all meals—not a single delivery car has darkened the driveway—bringing them to me, cleaning up afterward, as well as doing groceries, feeding and watering all four cats and the dog, driving Luka to gymnastics, and the bus terminal, and Graydon to the scooter store, and the convenience store and so much more. It makes me feel very special, particularly as I have come out from under the narcotics haze and realized what he really has done while I’ve been sleeping. I hope I never have to return the favour (because then he would be in massive pain, etc.), but will figure another way to return this fine treatment. ❤

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Goodbye dishpan hands!

 

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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/

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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.

This has nothing to do with cancer, promise!

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My first foray into cutting hair was my boyfriend who, after hiding the punk haircut I gave him under a thick stocking cap for months, still eventually married me. Then I very cautiously cut a stray lock of hair or two off my children’s precious heads. Years later now, I know my limits. I did not cut off my hair after chemo started the job, and I will not cut the family dog’s hair either. After squeaking out an extra month and a half from his regular time for a clipping, I took this dog to BooBoo Pet Grooming:

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Clover, four and a half months after his last grooming, rocking that little woolly mammoth look.

Clover, four and a half months after his last grooming, rocking that tres-casual, little woolly mammoth look.

After working for literally HOURS like a dog on crack to get his bejewelled beribboned holiday hair topknot doodad OUT of his hair, this is what we have:

WTF?

WTF?

Which is constantly reminding me of this guy:

Sid, the sloth from Ice Age, and a movie we watch on the holidays just because it's cold in the movie, just like it is here.

Sid, the sloth from Ice Age, and a movie we watch on the holidays just because it’s cold in the movie, just like it is here.

But, the hair on his head is still longer than mine. Aw, I did write about cancer after all! Forgive me, please?

 

Dad’s birthday

It’s another in the year of “firsts without Dad”—his birthday. First Thanksgiving, then Remembrance Day, then his birthday, the very next day. Tessa, Luka and I went grocery shopping and looked for a gingerbread cake, one he loved. We got the closest thing there was—a honey cake. Tessa bought me a present for Dad’s birthday: A round medallion with crystals on it, and four little single crystal charms with it. She said it could represent Dad and his four kids, or Dad, me and the three of them—Tessa, Graydon and Luka.

My Tessa is an old soul, and loves me so much. Her heart is so, so big. I’m afraid I’ve been taking up a lot of room in that heart since I got sick.

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Midnight MRI

I had a full chest-abdomen-pelvis CT done just before radiation was over. I called a week later and was told  by my oncologist’s assistant that it was clear. YAY! No little cancer worms, scraps or shrapnel got loose into my body between surgery and radiation. Huge weight off my shoulders. Yahoo, whoop, whoop, whoop!

One month later, at my September appointment with my oncologist, I say, “Well, I heard my CT scan was clear,” and she says, “Yeah, well, about that. There’s something on your adrenal gland in the CT. Could be something, could be nothing.” I’ll order an urgent MRI and we’ll see what it is.”

“IT’S METASTASIS, THAT’S WHAT IT IS!!!” I didn’t say that. I asked, “Is that in my brain? Because I don’t want it in my brain.”

I love when I am my own comic relief. My doc laughed and laughed—”no, they’re little glands on top of your kidneys.”

“Oh good. I just don’t want that cancer in my brain.”

I didn’t ask any questions, because Dr. Brezden-Masley and I don’t deal in what-ifs. She said she’d ask for the MRI on an urgent basis, and I should call her one week after the test. Then I left the hospital and drove to Stratford for Dad’s visitation and funeral.

It took me a day or two to actually get to my computer and look up triple negative spreading to adrenal glands—and damn, it does! I also found this image:

OMG! How could I be scared of what looks like two chocolate-covered jumbo jellybeans with cute little toques on???

My urgent MRI came up five days later at 12:45 a.m. I drove back to Toronto, and took Graydon as my companion—when you self-medicate in the MRI tube, they won’t let you leave the hospital on your own. It was loud and clangy, and claustrophobic So at 2 a.m. I was back in my bed in Toronto, thinking about my dad, about this aggressive triple negative cancer, about metastasis, about prognosis with metastasis, about that evil freaking cancer. Low, low times.

So tomorrow I will call and hope the CT had a shadow, and the MRI banished it.

Join me in hoping please, please, please?

My dad is gone…

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My dad, L. Ray Waller, died last week on September 17. My sister Heidi called at lunchtime to say one of the nurses had called her because he really wasn’t eating anything, he was making noise when he breathed, and they were having a hard time waking him up. Heidi said she was on her way to see him. I said I had an appointment with my oncologist to go over my recent CT scan the next day, and I would likely leave from the hospital for Stratford. She called me five hours later and said he was gone, in his sleep.

One of the reasons I never wanted a big wedding was that I knew I would cry all the way down the aisle walking on my dad’s arm because I couldn’t stop thinking that he would one day die and leave me forever.

I took a university psych course on death, dying and grieving, because I knew I had a problem if I couldn’t even handle the thought of it.

I visited my dad at every hospital stay, staying overnight a few times so there would be a family member right there to advocate for him, went to specialist followups, visited him in his nursing home. I told all my family NOT to mention my cancer, because I couldn’t bear the thought of him thinking that his “baby Jackie” was sick with this f’ing disease. I wore my wig religiously every time I saw him.

Ed and Heidi spoke at the funeral for themselves and for Juli and me, two chickens who have never been able to speak publicly. They made me cry. The mayor spoke as well—my dad lived in Stratford 52 years, yet when the mayor added up my dad’s years of public service, he found that my father put in more than 140 years of public service. The city flew the flag at half-mast the day of his funeral, out of respect and gratitude and mourning his loss.

I drove back home today for a test, and have spent the last four hours in my room, trying to cry it out. So far, it’s fresh tears every time.

The flag flies at half-mast in Stratford on September 22, 2014, in honour of our father, Leslie Raymond Waller, November 12, 1929 – September 17, 2014. Photo by Juli.

The flag flies at half-mast in Stratford on September 22, 2014, in honour of our father, Leslie Raymond Waller, November 12, 1929 – September 17, 2014. Photo by Juli.

Heidi made a website for dad, and if anyone would like to read about an amazing father and man, please visit. She did a great job on a great man.