HIIT

It's supposed to look like this:

But I didn't even come close. I think I looked more like this:

Life in the "After" means recognizing limits, and then making peace with them. I would hardly have called myself athletic prior to cancer. But in the "After" it is tempting to look over my shoulder, and lament the many losses: muscle mass? Shrunk. Endangered, even. Fat? Unwanted. Thriving, though. Finding ways to change that? A challenge to say the least.

My first attempt at HIIT was both discouraging and Hilarious. Discouraging because I learned how weak my body has become. 20 seconds of push ups, then 10 seconds of rest, repeat. Um... how about 2 push ups. And then collapse in a heap. But it was hilarious because all 4 dogs joined in. Jake piled on me first, followed by Lady. Then Sam & Harley joined and it was just a tail wagging, barking and pink kisses mess.

So I will keep trying to be that HIIT girl. Ok, well maybe not the blonde bombshell above. But my own humble version!

Date Night

Last night, hubby and I went on our FIRST DATE NIGHT post cancer treatment!

Pain usually worsens in the evening, but as evening arrived, I was almost pain free. And so I had enough energy to go out for dinner and an early movie. (Haven't done this in, oh, about 2.5 years cause I usually gulp pain meds and go to bed by 9:00 PM).

Very happy to spend time with my hubby, doing normal couple things on a lovely summer's eve.

Ask the Experts: 570 News

Did you know that the percentage of diagnosed diabetes in Canada increased by 70% between 1998 to 2008?

And it's not just an "old person" disease as my students describe adults. In this same time frame, the incidences of diagnosed diabetes doubled for those between 35 - 44 years of age. (Gulp).

I mention this because recently I was a guest on a local talk show, called "Ask the Experts." The goal was to share information about the use of FREMS (Frequency Rhythmic Electronic Modular Stimulation) to treat peripheral neuropathy (PN). Most Canadians who experience PN develop it as a result of diabetes (Diabetic Peripheral Neuropathy, or DPN). While I share how FREMS helped to treat chemotherapy induced peripheral neuropathy (CIPN), my chiropractor, Dr. Moona, also describes the impact of DPN and how FREMS has affected his diabetic patients.

I shared the link to this talk show episode on my personal Facebook page (which is not public). But given the many questions and excited response to that posting, I have decided I need to share this more widely. So here is the link which you can copy and paste below.

http://www.570news.com/audio/ask-the-experts/


If that doesn't work, go to 570 News. Look for the "Audio" link on the menu at the top of the page. Click on the "Ask the Experts" link. Click on the July 11th episode.

IF YOU HAVE FAMILY OR FRIENDS WHO ARE DIABETIC: PLEASE SHARE THIS PAGE WITH THEM. (I don't care about increasing the blog hits. But I do care about raising awareness of this treatment among folks who are struggling with the impact of diabetes and DPN).

Thanks!

26 Days Later

Twenty-six days. Ten treatments. That was all it took to undo most of the damage from chemotherapy to my peripheral nervous system.

I had no pain in my hands. And my feet? They were not completely pain free, but the improvement was unbelievable.

The best way to explain this is to follow the medication trail:

May 2013: I swallowed 18 pills a day in an effort to deaden the debilitating bone pain that had taken over.
January 2014: My doctor changed my prescription to a new medication, which meant fewer pills, but more potency in side effects. And my daily pill regimen looked like this:

Since the medication combined with the painkillers left me drowsy, groggy and processing things at the speed of a 100 year old turtle, I avoided taking them until I came home from work. At which point, I felt like this:

Not much had changed by September 2014, although I had managed to get by with 2 fewer painkillers on a good day. But I still pretty much felt like this -

Then came May 2015. The breakthrough pain episode changed my prescription like this:

The net effect?

Then came FREMS. And 26 days later, the medication trail looked like this:

The medications were the same. But the anti-nausea meds? GONE. Heavy duty pain killers? ONE was enough.

And I began to feel like this:

FREM'd

It felt like science fiction: attach 16 electrodes, 8 on each leg. Concentrate as the kinesiologist turned up the current in 2 electrodes at a time. "There." As soon as I could feel the sensation, I let him know. He dutifully recorded each level where sensation began in my legs for each electrode. Then he left me to be "FREM'd."

Each session lasted around 40 minutes; first my legs, then my arms. There was no pain involved. I simply sat and read a book during each treatment, and then I left too.

And it was true: after the first treatment, I DID notice a difference: the tingling in my hands stopped, for the first time in 2.5 years.

Still, I was skeptical: the tingling was an annoyance, and least of my concerns. I was more focused on pain relief, and that did not yield at all after session one. But I booked 9 more.

After all, what did I have to lose?

Beam me up, Scotty.

Clear

Test results came in at the end of May:

Ultrasounds: clear
MRI: clear
Bone scan: clear

Pain levels: who cares? I'm STILL IN REMISSION.

Wash, Rinse, Repeat

Been a while since I posted. The last 8 weeks have been a roller coaster.

May was a blur. I finally stopped and just listened to my body in an effort to shut down the pain cycles. The result was that my medication use skyrocketed. Seriously - prior to the breakthrough pain episode in April, I was on a fairly standard pain management regimen for CIPN: anti-seizure meds & off label use of an anti-depressent to shut down the tingling and deal with faint numbness. Plus a painkiller for the bone ache before bed. My family doc responded by doubling the meds and increasing the use of painkillers to its maximum dosage.

It helped. And it didn't. May was a blur because I spent it medicating the pain away, and I hardly remember anything. Daily routines involved gulping meds upon waking, and taking painkillers. Watching the clock until it was OK to take more painkillers, to manage the dull bone ache that had my body in its grip. And then going to bed, slipping into a deep sleep with troubled dreams - only to wake in disoriented pain and gulp down more painkillers. Wash, rinse, repeat: wake up, gulp meds & painkillers; watch the clock; go to bed.

I am not alone in this. One in five - 20 percent - of Canadians suffer from chronic pain. The impact?

"Three quarters of the people waiting for care at Canadian pain clinics say it interferes with their normal work life. More than half suffer from severe levels of depression. And almost 35 per cent report that they've considered suicide." (http://www.cbc.ca/news/health/chronic-pain-poorly-understood-costing-canada-billions-1.2681223)

On the one hand, I was lucky to have a doctor who believed me. She listened as I described the pain and its impact on my life. And then she acted. I am grateful for her willingness to provide support and relief. (If she hadn't, I quite easily would have slipped into a severe depression - chronic pain just wears a soul down.)

But the only options my doc offered were bleak: Long term use of painkillers, and other medications. Long term disability for the near future, and likely until I "retired." No cure in sight.

Life in the "After" of cancer treatment sometimes feels overwhelmingly difficult.

Grateful Canuck

Today I am thankful for the Canadian health care system.

I know that it has its fair share of warts; we are all familiar with the dreaded long wait times in the Emergency Room. The time between family doctor check ups, and seeing a specialist is another period of waiting. And, as my surgeon said, waiting for test results is often the most difficult challenge we face.

Despite these problems, I can't help but be grateful for our medical system. Consider this: Between April 30 - June 3, 2015, I will have completed the following medical procedures:

Bone scan
Mammogram/Ultrasound
Blood work (2X)
MRI
Ultrasound (again!)
X-rays

Results for these tests will come dribbling in within a few days or a week afterward, often shared via telephone by my family doctor. In all, this testing period will have taken approximately 5 weeks. (The last test will be completed on June 3, 2015).

My perspective has been shaped by travel. If I were a Nicaraguan, I could go to the hospital and be diagnosed for free, but then have to pay for every bit of medicine and treatment for a cure. In Belize, treatment is covered by the government - but it is very basic, so complex health issues sometimes require travel to another country - likely Mexico. If I were Kenyan, I might live in an area without any infrastructure: no electricity, running water, or medical help. I would have to walk, and then travel by bus, to the nearest hospital. This journey could take days. Upon arrival, I would have to pay for my treatment, too.

But I am lucky enough to live in southern Ontario, and live within 15 - 20 minutes from doctors, hospitals and specialists.

And then I wonder: how much will these 5 weeks cost? I can't imagine having to pay out of pocket for these tests, or navigating the costs with an insurance company.

So while I wait, I am grateful that I have been able to walk into the various hospitals, clinics and labs to complete these procedures, all without spending a dime.

It's another blessing. I'll take it!

Benched

Harley and I have many things in common: We both have chronic injuries. He has hip dysplasia (probably the result of poor genes and starvation while he was still growing). I have chemotherapy induced peripheral neuropathy (CIPN). Neither of these conditions can be cured. Both problems can be managed through medication and carefully structured activities.

Sometimes Harley and I forget our limitations, and do too much. I work too much; he plays too much. He ends up lame, and cries when his hip joint bothers him too much. I end up dealing with breakthrough pain, and having my doctor put me off work for 4 months (!!) on medical leave.

Now we are both moping around at home, together. (Please excuse the next bit - I don't want to sound like I'm whining...)

This existence in the "after" apparently holds a few surprises.

I must admit I was shocked at the doctor telling me I had to stay home and rest for the remainder of the school year. I was expecting a week off, maybe two, tops. But like a lot of other things, I was wrong.

And here I am at home with my pack, trying to figure out how to beat this chronic pain and reclaim my career.

It is a relief to no longer face each day and struggle to drum up the energy to push through the pain, and deal with the constant crises at work. But I feel cut adrift.

Two things caught me by surprise - the intensity of breakthrough pain, and the power of this condition to simply stop my everyday life.


How I frame this development is important. While I feel stuck, I'm trying (struggling) to see it as an opportunity to figure out CIPN and how to better live with it. Clearly my prior strategy of just ignoring it during the day and medicating the crap out of it at night didn't

cut it. The pain isn't going to just go away. I need to learn how to live with it, manage it, and carry on.

In the meantime, if anyone has any ideas about how to get a very stubborn mastiff to take his doggy meds, I'm open to suggestions.

Reboot

I had a migraine two weeks ago that blew the doors off my recovery. I was off my feet for 2 full days, unable to keep the meds down, and so felt the full impact of the migraine plus unchecked nerve pain. Not fun. Took me 3 days to recover and get back to work.

And then the oncologist decided, given the severity of the event, a spate of tests needed to be completed to rule out relapse: Bones ache? Schedule a whole body bone scan. Migraine? Follow up with an MRI. And, just to be safe: an extra mammogram and ultrasound to rule out the chance of a local recurrence (another tumour in the breast).

Daily nausea? Increased nerve pain? Back to the family doctor to revisit the medication regime.

Part of the "after" of cancer is living under a microscope. It's a wonderful blessing and an unwelcome interruption. Part of me says, "Calm down, everyone - it was just a really bad headache!" The less reasonable part of my brain says "Please be thorough. Please check every nook and cranny so that I stop waking up in the middle of the night, wondering."

While I wait for the results to come in, I am rethinking the recovery plan. New tests, new meds, new schedule.

Once again, I am so very fortunate to be surrounded by support systems. My employer is sending me a consistent message from every level of the organization: Take the time you need to get healthy. Don't rush back because the job is always going to be there. My husband takes the measure of my energy levels and how big the circles are under my eyes each day, and then just pitches in at home. Friends and family offer love, prayer, and companionship. They understand when I am too tired out to visit; they cheer on my good days and love me through the bad.

And of course there is my pack. They get me out of bed each day, entertain me with their silliness and inspire me by their love of life. I watch them celebrate a beautiful day by rolling in the long meadow grass. Pink tongues loll as they romp through a nearby stream. Their happiness buoys my spirits.

Not everyone who lives with chronic pain and/or in the shadow of cancer has these advantages.

So while I wait for confirmation that everything is just fine, I choose to focus on the blessings and not on the worry.

Accidental dog therapy

Shortly after my diagnosis, a colleague came to visit me. She had survived the same breast cancer and shared her insights with me just as I was poised to begin treatment. One of her tips was that, during recovery, I needed to find a hobby that filled my days. Something new that I would enjoy, and would fill the hours off work with a distraction. No use spending all the time on the couch, fixating on the "What ifs."

She took up photography. I intensified my efforts in dog rescue. (Sometimes I think she made the wiser choice!) But to blog about life in-between treatment and recovery means that I must introduce you to my pack. They were an integral part of my support team during the awful experience of treatment, and continue to assist me as we live "in between." Each dog plays a role in keeping me focused and physically active - so if you are not a dog lover, you may wish to stop reading here!

Our journey (my husband and I) with dog rescue started the year before cancer arrived. We adopted 2 dogs from a rescue, Friendly Giants Dog Rescue. Jake was the first to arrive.

He had been pulled from a shelter in North Carolina, after having been dumped there far too young to be apart from his mother, or to survive the shelter. So he was pulled by the rescue, and plunked on a transport heading north. He arrived a sickly puppy and has grown into the most beautiful and intelligent dog I have owned.



Next came Harley.

Harley and I have a lot in common, as he has terrible hips and often limps with pain after a long day of too much activity. He is a survivor too - having been found in a forest in North Carolina, tied to a tree, starving, shot, and left to die. After intensive efforts to rehabilitate him, he is a stellar Cane Corso: powerfully built, physically intimidating and a big softie. He has bonded deeply with us, following me around the house and our property. All he wants is to be together with Pete and me.

And then there is Sam.

Sammy is the anchor of our pack. He is oldest, and was our very first rescue, arriving before Harley and Jake. After living in the Northwest Territories for a year, we brought him home from a shelter. Everyone loves Sam. He is small mixed breed; calm, gentle and very balanced. He is Harley's security blanket, Jake's playmate, and my snuggle buddy. He may be tiny, but he fills a huge spot in our pack and our hearts.

And of course we have Lady. Lady was originally a foster dog, but came to us with a complicated history. She is now a "forever foster" because while she has made a good deal of progress in the last year, we figure she would only regress if she left and had to make another adjustment to another family.

Walking my pack has been an essential tool for recovery: a simple pack walk conquers nausea, fights off the blues, and forces me to get up and out of bed every day no matter the weather or my body's objections. They are, without a doubt, a huge part of my personal support team.

Hesitation

I dislike the term "cancer survivor." It's a conversation killer. When people hear this, there is a shift in dialogue to an automatic deference. It's uncomfortable but I have learned to stop and let the response take us in whatever direction it goes. Usually, I hear stories of how cancer has touched the lives of people with whom I am speaking. So many have fallen - sisters, wives, grandmothers, aunts, cousins, dear friends.

There is so much heartache. So many losses. These stories have made me hesitate to write for over a year. I don't know how to wear the label "survivor" when there are a multitude who fought the same battle and lost. Or worse yet, I meet a dear one who is currently in the fight for her life - and there I stand, in remission.

Survival is such a crap shoot, and feels so random. I live. Others die, or are facing death. When I hear these stories, or watch friends and colleagues struggle along with a terminal diagnosis, I don't know what to say. My heart just aches, and I stumble around looking for a response. I feel small.

But it also makes me want to pull out my favourite T-shirt - it's black, and boldly states in white letters: F--- cancer. (I haven't found the courage to wear it in public yet!)

I guess it is another kind of pain in this world of living "in between." Another chance at life is a blessing, no matter how different it looks in "the after." It's a strange and humbling place from which to support others who have a different story.

My worries in writing are that somehow I will diminish or overlook the suffering of those around me who carry the wounds of loss. My imperfect humanity is a good reason for hesitation.

Yet I know there are others out there who, like me, are rebuilding, and coping; hoping, and trying to make sense of the new normal. Life after cancer is complex, filled with conflicting emotions, ideas, and experiences. It's a blessing. It's a challenge. And it is uncertain.

I hope by giving a voice to it, will be a means to healing for myself and whoever follows along.

Yesterday, my niece gave me a hug. She is a newly minted midwife, and we were discussing her next steps. Aside from landing a job, she had prioritized further training in nutrition and homeopathy to assist her clients in healing from the demands of pregnancy and birthing.

How, she wondered, was I sleeping?

Like so many things in my life, the answer was not a simple one.

When I described my sleep pattern, often disrupted by pain at night, my niece responded with a hug. I whispered into her ear "But at least I am here." Alive.

"I'm glad," she said.

So am I.

I am a "cancer survivor." In June 2012, I was diagnosed with early stage breast cancer. Treatment lasted until Feb. 2013. Thankfully, I am in remission. But I am not fully recovered from the impact of treatment. Currently, I exist in-between full recovery and treatment: living with chronic pain from nerve damage, I am trying to figure out the pathway to full health.

This blog is about living in the "in-between."