Wednesday, September 5, 2012

The Waiting Game, Part II

There's something very hard about all the waiting that goes on once you find out about cancer.  Two different doctors, each with different processes that are taking place.  They communicate with each other, but only if the patient mentions something or asks a question that might link the two. A link to another organization, called CancerCare Manitoba, that will then also get involved.  We still haven't talked to an oncologist.

Last week Tom met with his urologist for a second time following surgery.  The purpose was to discuss PSA levels post-surgery and ensure healing is taking place. The PSA level from August is high enough to warrant more aggressive therapy, so Tom is now required to take a drug which will remove the fuel of prostate cancer, testosterone, from his body.   Luteinizing hormone-releasing hormone is released from the hypothalamus of the brain when the hypothalamus detects dropping levels of testosterone. LHRH is received by the receptors of the pituitary gland which releases luteinizing hormone or LH which travels to the testicles and begins the production of testosterone. In prostate cancer hormone therapy, LHRH agonists and antagonists are used to prevent the pituitary gland from releasing LH.  The drug is seen as the best way to control the spread of prostate cancer.   CancerCare provides the drugs free of charge for home-based cancer therapies.  Once CancerCare is notified, the patient should be able to take the prescription to the pharmacy and receive the required pharmaceutical product.  

Somehow, somewhere, in the meetings with doctors, receptionists, and pharmacists, no one thought to let Tom know that additional paperwork is required in order to process the request with CancerCare.  Finally, four days after Tom dropped off the prescription, repeated phone calls and discussions,  someone in the pharmacy thought it might be useful to mention the fact that additional paperwork would be required.  Bureaucracy is its own devious game; I'm used to it, given that work at a University, but I've always made it my goal to present information in the most transparent way possible.  So I dug deeper, and found a contact number buried in one of the many links on CancerCare's website. Don't you think that should be given to the patient with his or her prescription?  Where are the people who help to explain the process?  That should be part of post-surgical care, which starts as soon as the patient leaves the hospital.  I guess waiting wouldn't be as hard if you got all the information you needed to start the wait...

The MRI scan took place on Friday afternoon, and those results will be discussed with the general practitioner next week.  More waiting.  The plan is that there will be an oncologist (Cancer specialist) involved as soon as these results are processed.  In the mean time, Tom is dealing with the relentless pain in his hip/pelvic area, which creates its own spiral.  And this is the week the kids went back to school.  Tom is home right now, not teaching in September for the first time in 27 years, and is feeling the loss of his professional role as well.  So we wait, a bit longer, to see what will transpire.  Keep the thoughts and prayers coming -- he's very aware that his friends and loved ones continue to think about him.

Saturday, July 21, 2012

Rhubarb in all its glory

Apparently (and perhaps this is a rural myth), prairie dwellers eagerly looked forward to the sprouting of rhubarb plants, amongst other green plants, after a long winter of no or little fresh fruit or vegetables.  Apparently it is a good source of fibre, Vitamins C and K, calcium and manganese. Regardless, it a bit of an odd item -- I remember chewing those young stalks, either plain (mouth-puckering fun) or dipped in sugar to fight against the extreme tartness. I can see how you would crave something fresh after you'd been subsisting on soft potatoes, old turnips, and a few other items you'd been able to squirrel away in different cool and dark spots.  Amongst many examples, I remember hearing from my grandparents and mother about dried fruit (my Oma Wiebe, dad's mother, who loved dried, sour cherries), canned vegetables, which had been prepared in a pressure cooker (Grandma Voth, who is mom's mother), and watermelons preserved in brine (mom). But the first fresh items that showed up in the spring were very welcome! And rhubarb is one of those plants which shows up early in the spring; it's hardy, came from Asia and Russia, and was one of the first "fruits" to appear on the land.

Here are definitions of the word RHUBARB as found at the website that purports everything for rhubarb ... http:www.rhubarbinfo.com).
  1. Any of a genus (Rheum) of Asian plants of the buckwheat family having large leaves with thick succulent petioles often used as food
  2. The dried rhizome and roots of any of several rhubarbs grown in China and Tibet and used as a purgative and stomachic
  3. A heated dispute or controversy. 
A heated dispute or controversy... should rhubarb be placed in a food item that could be delicious all on its own?  One day, co-workers were having a sale of baked items to raise funds for a cancer group, and I discovered an amazing muffin, which led on to another and another... oh so fantastic.  And this item included rhubarb, so I thought I'd try it on the gang at home.  Kai decided in the last year or so that rhubarb has a place in his culinary palate; others in the home have now followed, given this delectable muffin recipe.  

Ready to Eat


   Here's the recipe, if your rhubarb isn't already all tough and overgrown.  Or if you've frozen some, ready for the next inspiration.  If using frozen rhubarb, let it thaw completely and drain, and your muffins will be truly wonderful.

Streusel Topped Rhubarb Muffins

Muffin Ingredients:
2 1/2 cups all-purpose flour
1 1/2 cups packed brown sugar (I reduced this amount a bit)
1 tsp salt (I didn't bother)
1 tsp baking soda
1 tsp ground cinnamon
1 egg, lightly beaten
1 cup buttermilk
2/3 cup vegetable oil (I reduced this to 1/2 cup, especially when using drained, thawed rhubarb)
1 tsp vanilla extract
1 cups finely chopped rhubarb

Streusel Topping:
1/2 cup sugar
1 tbsp butter or margarine, melted
2 tsp ground cinnamon

Combine first 5 ingredients. Combine egg, buttermilk, oil and vanilla in another bowl, and stir into the dry ingredients gently. Fold in rhubarb. Fill greased or paper-lined muffin tins about half full.  Combine topping ingredients in another bowl and sprinkle over each muffin.  Bake at 375 degrees F for 16-18 minutes or until muffins test done.

(Recipe courtesy of Allrecipes.com)


Thursday, July 19, 2012

The results are in...

And Tom's journey with prostate cancer continues.  Today's visit to the urologist provided the awaited "results", if you can call it that, of the removal of the prostate and six lymph nodes.  Most of the lymph nodes are clear, but two are affected by/have some cancerous tissue in them.  Big names and numbers aside, Tom is going to have to spend more time receiving radiation and anti-hormone treatment to remove as much of this cancer as possible.  In the last year, prostate cancer research has found that the tumours, or cancer cells, create their own hormones, which require different chemical responses that the "traditional" hormones.  That's why it seems to be so difficult to find and respond to what is happening with cancer cells -- they are smart! The surgery "debulked" (to use another amazing term) as much of the mass as possible, but as it is invasive, or has become invasive, other surrounding tissues were affected, and more fighting off has to take place.  His attitude is good but a bit numbed -- I think it's overwhelming at the least, and I can only view it from the status of an outsider.  

There are the physical details that will need to be addressed as well as the psychological and emotional. Of course all the literature talks about a positive mental state, but much of this information is potentially overwhelming today.  Believe it or not, he was able to re-affirm the fact that vacuuming still shouldn't be part of his routine -- who ever came up with that thought?  This for a man who stays far away from the vacuum cleaner.  It gave the staff and several others at the clinic a moment of amusement as we departed the waiting room. 

Thursday, July 12, 2012

Winter ... from the perspective of July

Left-over crab apples

Hoar frost on blue spruce

The Waiting Game

In January, Tom had the experience of having a prostate biopsy to gain more information about feelings of pressure on his bladder.  We have a "free" health care system in Canada -- we obtain medical information and advice as needed, but we have to seek out assistance from a primary general or family physician, who then makes a referral to a specialist.  In this case, the specialty that provided the consultation was urology, someone who focuses on the urinary and reproductive systems of males.  Tom has (we have) been waiting since winter to uncover and understand why that bladder was being pressured (more than normal! more than you would expect from a male who has had a tiny bit of experience with beer drinking and has managed to hold his own, although never to the extent of some of his partying beer-guzzling friends -- but I digress...).  At the same time, he started to have pain in his right hip/pelvic region (now officially recognized as the acetabulum), which got attention from both his primary care physician and the specialist to whom he had been referred for the biopsy.

Our health care system is truly a blessing -- I have since heard stories of people in that big country to the south who cannot afford anything but a basic diagnosis and live without additional assistance because of the cost.  We, as consumers and supporters (through our taxes) of the Canadian health care system, still have a personal obligation to understand as much as we can and make decisions that are appropriate for our health needs.  In spite of everything, of all the information from the specialist and family doctor, this has still been a waiting and processing game. As a consumer of the information, you are still very much on your own when it comes to understanding the terminology, the consequences or possible side effects of the treatments that are recommended, and the way your own brain processes the word "cancer" when it comes to a diagnosis.  And I'm not the one with this particular diagnosis. In each of these steps, from wondering and asking, to discovering, to hearing, to seeing, there's been a wait.  Day after day we waited, until we met with the urologist.

The big C -- that's all my brain focused on once we met with the specialist to discuss the biopsy results.  The finding was of cancer cells in each of the snippets that had been removed from his prostate. I'm speaking from my own perspective -- Tom had a slightly different (more mature? more focused?) response -- some relief, a lot of black humour, and ultimately, a very positive and deliberate response to dealing with this invasion in his body. The suggestion was that a radical prostatectomy would be needed; lymph nodes would also be removed and biopsied; that's what happened on July 4. 

I didn't really sleep the night before -- it doesn't help that we are having a hot and humid summer, and our upstairs bedroom is as stuffy as it gets when things have been hot for a week. So I turned on the stand-alone air conditioner, which droned its way through any of my subconscious.  Tom did manage to sleep for a while. At the hospital, prior to surgery, he was offered something to relieve the anxiety and help him relax -- he was already quite relaxed, but the effect of 1 mg of lorazepam allowed him to drift off while we waited.  I suggested that I could use some as well... this highly addictive (and effective) product wasn't extended to me -- darn!  I was left to wait, and told to be there at 12:30 to meet up with him post-recovery.  It's a strange feeling to let someone you love be wheeled away into the big unknown -- they would inject him with needles, tubes would be inserted, medications would take over his breathing and his brain, people would cut him open and start to snip things away to get at the tumour that was sitting in and around his prostate.  I came back home for a little while, then headed back to the hospital under a black, thundering sky.  What were they doing?  How would his body respond? How would he be afterwards?

Checked in with the nursing station on the 4th floor of the Grace Hospital, but they sent me to the "day room" to wait.  A little bird of a man showed up, engaged me in a strange story about being left in his house for 3 days on a cold floor in the winter before neighbours got worried and broke in to find him there unconscious. The story was full of details related to an incident in the winter that had undermined his efforts to volunteer for Winnipeg Harvest following an unsuccessful Cheer Board volunteer stint, but strange segues kept me wondering if he had slipped to another level of consciousness. Enough reality to keep me guessing; something wasn't quite right though, given that he had been in hospital since before Christmas of 2011. Regardless, the conversation occupied my worried mind for a bit.

Finally they came to let me know that Tom was in the room, and he was quite "funny".  Exact word used.  A relief to me -- when Tom is on, relaxed, and engaged with the world, he is very funny.  Funny enough that I laughed so hard I spat food on him one of the first times we talked together.  So... I sat with him, the nurses came and checked his blood pressure, temperature, heart rate, etc., every 15 minutes, and he insisted I give him several New Yorkers and Macleans magazines I'd brought for him. A quick commentary on Justin Trudeau's profile versus full face photographs  -- which one looked better.  Some bits from the New Yorker. More introductions of the medical team who were providing assistance.  This is his brain after surgery -- I was impressed.  Then as my brain wandered a bit (I was tired, I must say in protest), he started on a story about chicken in red panties being threatened by Gestapo, or the Nazis.  With that I snapped to attention.  What was he reading?  He wasn't reading -- he'd drifted back to a bit of a slumber and started talking about something he was seeing.  So THIS is your brain on drugs... impressive!  A few more stories about green lights flashing by, certain shapes drifting in and out of the walls, and I realize I saw how a visual person processes the anaesthetic and narcotic haze following surgery.

He's now home; says he's feeling better every day with 40 staples and an in-dwelling catheter for another week. Recovery takes its time, and he has some work ahead of him. Hip pain was back once the epidural drugs were taken away, and that's still a concern.  We meet with the specialist next week to uncover and discuss the next stage.  The lymph nodes were clear, but there was extensive tissue involvement with the tumour in and around the prostate.  So that's what we need to figure out next.

Wednesday, April 25, 2012

Aunt Herta

Herta Judith Voth. 

A life lived.  A woman who did so much on her terms, but always in conversation with her God.  She was devout and she was determined.  A formidable combination.  Three weeks ago her family and many friends, from different parts of the world, celebrated her life.  She was my aunt, the aunt of all of my cousins and our children.  Our family history has been changed.

January 3, 1923  (born in eastern Russia) to January 23, 2012, Winnipeg, Manitoba, Canada.  Manitoba and Canada welcomed my grandparents and their three young children in 1925, fleeing the Revolution, banditry, a lost life.  Springstein, Manitoba became their home.  My growing up years were filled with Springstein and Manitoba stories; the lore included stories of my mother's older sister, Herta, who was instrumental in rescuing my unconscious two year old mother from the horns and hooves of an angry bull. It would have been interesting to view that encounter -- the bull and Herta and the body of a young child.  The young child survived, thanks to Herta's rescue, the skills of a local man, a Hutterite who had amazing healing skills, and care from her family.  Ultimately, the bull did not.

Herta was an awe-inspring figure in my eyes.  Coming in and out of my younger life, she presented a challenge.  This woman wasn't full of frivolity.  Her life was always focused, always with a goal in mind, and young nieces, of which I was one of several, had to think about their place in the world and act accordingly. When my younger sister and cousin had a good time checking through Herta's belongings in her bedroom one afternoon, I, as the older sister/cousin, was the one taken to task for not managing them. She wasn't unkind, just had already had so many unique and demanding experiences that we must have seemed a bit careless to her.  Her training as a nurse, at the Misericordia Hospital in Winnipeg, was an excellent career choice for a smart, focused and determined young woman. I remember her care-giving skills in our house when my youngest brother, Joe, was born, and my own mother faced several health and healing challenges.  Again, my need to whine about a life event that must have seemed frivolous; in this case, a rotten grade 7 class picture (with one eye closed and my hair pinned up all goofy) was no need to complain when there were so many more important things in life that deserved complaint... tell that to a girl in grade 7!!

Her love, however, was deep and wide, just like the song said.  Love, concern and caring for parents, siblings, nieces and nephews, the indigenous peoples of Panama and Colombia in her working/nursing/missionary years, the Mennonite communities of Bolivia in her "retired" years.  Animal life (the bats who lived in her jungle home; the kittens and cat she brought with her on the journeys so they could keep the mouse/rat population down; stories of pythons who lived in family homes in the jungle, an accepted part of life), her "grand" nieces and nephews, her adopted children and grandchildren, friends from the Latin American community in Winnipeg and elsewhere, and the list is much longer than I will ever know.

When I became an adult, she and I were companionable.  Her invitation to me, when I was 17 or 18, to visit her in Panama didn't fit into my life's plans at the time - I was heading towards University in the autumn, but I realize now I was scared of the possibilities of that visit.  Too bad.  Might have been a life changing event.  But that's the road I didn't take, so when she "retired" from her work in Panama and settled (if you can call it that) in Winnipeg, we had a chance to become better acquainted.

She loved the hot, dry weather.  She enthused one hot August day, when the temperatures were close to 40 Celcius, about the gorgeous hot wind.  She loved to be useful, no sitting around.  In her mid to late 70s, she came to our home twice a week to help me with our three little children, the boys being 3 months old at the time.  She sat with them, rocking them in their little seats, encouraging an afternoon nap so I could fall into a deep and dark sleep for an hour.  This probably saved my (mental) life at that point, given that the two dudes were party boys at night.  She took Nicole with her on the plan to Ontario to spend time with my parents, so I could focus on our boys. She spent her nights with my cousin Ken and his family, when he was coping with cancer. I know she also spent nights with Tinaye, her adopted grandson.  Energy enfused with drive and love was a major characteristic.

She also made me good and mad at times, not including the need to keep my sister and cousin more gainfully occupied!  Telling me, in different words, but telling me, that I needed to grow up a little bit wasn't necessarily what I wanted to hear.  We were part of a large group of family and friends who celebrated her life in late January and many people shared their particular and unique involvement with Herta.  Her life was rich indeed -- we were blessed to be part of it, her energy is part of our large family structure and will continue with the current and future generations.

Friday, February 10, 2012

Tom Roberts - Ceramic Artist/Potter Extraordinaire...

The studio is finally finished, and Tom made the big move over to the new space in our back yard during the winter/Christmas break.  A lot of work, indeed, requiring input from friends, children, and the spousal unit, who didn't do that much!  However, the boys worked like adults with this move.

Tom is now setting things up, getting the new place organized.  Here's a link to a video and information about his work: In Plain View Winnipeg.