Posted in cancer

Changes

I’m sometimes amazed how things come together. I’ll mentally compose odd little snippets here and there, thinking “This is good. It’s just a part of something, but this is good and I must write it down.” A thought here. Another there. Then the final epiphany that makes is all cohesive. 

That’s how this happened….

Changes.

Cue David Bowie song….

Change can be scary. Actually, let me reword that; Change IS scary. In the end, we all want the same thing, right? To be loved, cherished, secure, respected…probably have a good amount of sex. These are our basic human needs. Of course we have other needs as well, but this takes us right to the nitty gritty.

So change…wow. It can be terrifying, at any age. The perspective about change also changes.  Change at age 20 or 30 might mean a delayed potential partner to have kids with, whereas a change in your 40’s can offer excitement, a breath of fresh air. 

And then, we have change in your 50’s.  Bloody terrifying!

Add to that, having cancer, and the decision to make changes can be paralyzing.

Is it better, though , to stay in a relationship out of fear of change? Everything stays status quo; you do the same things you always do, go about your separate lives, different interests,  in a somewhat loveless relationship while living under one roof, perhaps numb yourself into denial, turning a blind eye to everything that aggravates you about your partner?

You may not even realize you’re doing this, that’s the crazy part! You might even attempt occasional sex, though your body might then tell you in its subtle ways that something is wrong. Something is missing and you don’t even know when or, at times, why it happened. 

Sometimes you have to make those scary decisions; Is this how I want to live my life? In my case, it could be a handful of years, or a couple of decades. I’ve often found myself making decisions based on fear,  on the thought that my life has been shortened by cancer, when in fact, my chances continue to improve.  

So, is it possible that I’ll have a long lifespan? If I do, and I look back on my life, would I want to go back and kick my 50 year old ass for not having made changes?

This is where we now stand. Fifty, and starting over again, this time with what will always be called stage 4 kidney cancer.  Fifty, and making decisions not based on fear, but hope. Decisions carefully weighed, debated, delayed and eventually made. 

A big question I’ve had to grapple with is; do I even want to date? Who the hell, in their right mind, would even want to date someone with stage 4 kidney cancer, even if it is shrinking? What if it stops shrinking, starts to grow and spread again?

So this brings us back to our basic needs. I used to think that if I started over yet again, I wouldn’t date, for the reasons stated above.  But then, I think, what if I make it to 70. Would my 70 year old self look back and want to kick my own ass again for not allowing new love back into my life?

I wonder why I keep coming back to this point.  

Then I wonder, is it so terrible to stay single? Many people do it and are perfectly happy.  Could I be one of those happy, single people? I certainly have interests now that fill my day. 

But at the end of the day, when you crawl into a cold, empty bed, and shift all the way into the middle of the king size, just because you can…do you think “oh my gosh, this is amazing?” Or do you think “Wow, this sure is lonely? 

Or, perhaps a third thought, “This is great, but it’ll be even better when I have someone to snuggle with, once I’ve healed.” Maybe even a fourth thought, “I wouldn’t mind someone in my bed every once in a while.”

There’s no right or wrong answer. It all comes down to personal choices, preferences, needs and wants. Personal decisions made, not based on fear, but hope, desire, passion, purpose.  

How one even dates at age 50 with cancer is beyond me.  “Hey, there, good looking, you know I have a pretty good life insurance policy…” I’m guessing that’s not a good pick up line?

Yes, it is terrifying, starting over.  But, it can also be exciting and a chance for wonderful new opportunities, adventures, and hope. My rose quartz crystal and the tarot card I pulled both promise me that a great love is on the horizon.

And so, I wait. I heal. I keep an open mind. I hope, and I open my heart to the possibility.

Photo credit: Jack Moreh

Posted in cancer, Uncategorized

22 Months: My Story

Wooden Jetty at Sunset – Dreamy Looks
Photo courtesy: Jack Moreh

I always knew I’d write this story.

At the very core of my core, I knew. Once, I even started writing it but I wasn’t sure where I was heading with it. Would it be a book? Part of my biography, perhaps, or fictionalize it and make it a real tearjerker that would become a blockbuster movie, and then it would win all sorts of awards?

Ha! Yeah, I am pretty good, but I’m not that good! 

Yet, my story still begs to be told. Its voice demands to be heard. I feel that in order to fully move forward, I have to write it, but also know that in doing so, there will be many tears involved. Not just mine, but friends and family who might read this. 

You see, I usually have my shit together.  I pretty much always have. Even before I got my official diagnosis of kidney cancer, I already suspected and had warned my boyfriend. When the doctor confirmed it, he cried, I comforted him. “It’ll be okay. They’ll get the cancer out and life goes on.”

Well, it wasn’t really that simple.  What I didn’t  anticipate was that my diagnosis would be stage IV.  How does one go from being completely fine one day- in fact, feeling better than ever- to being constipated, then a couple of months later feeling a lump in your stomach and having some discomfort? 

I googled, of course.  I was the manager of a health and dental insurance claims department;  I was used to investigating things. I researched my symptoms and came up with being impacted, or possibly ulcers. Perhaps even both.

I went to a walk-in doctor clinic, discussed my symptoms, was prescribed a laxative, but then also sent for a precautionary ultrasound. She wasn’t completely sure it was an impaction. She could feel my lumps. I could see the confusion on her face. I’m an empath, therefore I am very good at reading people.

Days later, I could tell by the ultrasound technician’s face and the tightness in his voice that something wasn’t right. He asked me how long I had been in pain and looked confused when I replied that it had only been about a month.

Photo courtesy: Jack Moreh

A few more days passed before my general practitioner discussed the results with me, advising me of a mass in my stomach and the general size of it. I was then referred to other specialists and underwent a CT scan.

By then, my research took a different path. It must have already been mentioned to me that the mass was attached to my kidney and I find it strange that I can’t remember this detail today. There’s so many weird little things that I do remember, but then important chunks of information that I don’t.

In any case, I knew going into the appointment with the specialist that it was likely cancer, and if so, based on the size, that it was likely stage III. So the diagnosis was no surprise to me. The only surprise was that it was stage IV and that, due to the size of the mass attached to my kidney, it had shifted into my stomach. For those of you that might not know this, our kidneys are more towards our back body and not in the stomach.

None the less, I took the news in stride. I might even have smiled bravely, feeling bad for the doctor, having to deliver this kind of shitty news to his patients. I listened to the next steps, nodding professionally, as if discussing someone else. My surgery date was set for slightly over two weeks later, then I was sent to another section of the Ottawa Hospital for blood work.

An hour later, I was back home in Brockville. I recall having an errand to run and we were at our local mall here in town. I checked my phone and noticed a frantic message, asking me to contact some person I’d never heard of from the hospital, who left me his personal cell phone number to call back. Well, that couldn’t be good.

With shaking hands, I returned the call and listened to the news that my blood calcium was dangerously high and that I needed to check in to the hospital right away. I was annoyed, actually.  It would be a one hour drive back to Ottawa, it was already late, I hadn’t yet had dinner and I was hangry. I asked if it could wait until the morning and it all became very real when I was told no. I did, however, get permission to check in to my local hospital instead, only a 4 or 5 minute drive.

Everything from that point on was hell. The countless needles, transfusions, collapsed veins, the horror each time a nurse approached me with yet another needle, more bloodwork. My arms were butchered and I was traumatized by the time I was discharged, almost a week later. 

To make matters worse, my dad had passed away the day before my diagnosis.

He was buried the day after I was discharged from the hospital, but I was too weak to travel two hours away to my hometown and I was too pre-occupied with my own horror story to even grieve. To this day, over two years later, I’ve not felt that I’ve properly grieved his death.

A week later, my surgery. I don’t recall being especially nervous.  Yes, I was anxious, but more so in the sense that I wanted this invasion of my body removed so that I can then return to being superwoman and get on with my life. I was only 47 years old. I had stuff to do!

Things went well, I was told.  They removed my right kidney and the mass attached to it, which was the size of a small roast or cantaloupe. They scraped out everywhere that it had spread to and there was good news that it hadn’t affected my vena cava. I had no clue what that meant at the time, but was assured that it was a good thing.

No doubt they scraped out some lymph nodes, though I cannot recall. I do have a copy of my records, yet find myself unwilling to read them again. I should, and I know one day I will, but there’s stuff in there I don’t want to revisit. 

The only thing that remained were some tiny tumours that had made their way into my lungs.  These could not be taken out during the surgery.  There were four of them, all spread out, two in each lung.   For that, I would be on some form of treatment, if they didn’t go away on their own.  There was hope; apparently, there was a chance that they’d shrink away now that the mamma host was removed.

I was a good patient, asking for very little, walking as much as I could in order to regain my strength and be discharged as quickly as possible.  I must admit, the morphine was lovely, but by the end of my stay, I was imagining smells that did not exist and couldn’t understand why no one could smell the strong antiseptic odour that I could.

My attitude, at that point, was still “Let’s get this done and over with. Let’s fix this.”

I did not yet know of the poor survival rates for stage IV kidney cancer. Reality slapped me in the face a couple of months later when I had to get copies of my medical records in order to submit them to my insurance carrier to be approved for long-term disability coverage. In my heart, I already knew that I could never return to the stress of work.

My general practitioner received the documents from the specialists and called me in to discuss the paperwork. She knew me very well, knew I’d be scrutinizing every word, and there were a couple in particular she knew would shatter me. She did not want to simply put it in the mail for me to read on my own and I am thankful for that.

“22 months”

That was my initial prognosis.  That had not been verbalized to me at any point, but yet, there it was, in the report.  Black and white. At that point, three or four months had already passed. Up until then, I still pretty much had my shit together. That is when my world crumbled.

I had foolishly gone to that visit alone and was due to pick my son up from his part-time job and bring him back to Brockville with me for a few days visit. Before picking him up, I pulled over into the parking lot of a grocery store and had a good cry. 

He was just 17;  he didn’t need to hear this shit or deal with it at his age. He had asked me from the outset to tell him everything, but apparently I hadn’t mentioned the 22 months to him, so obviously I got a handle on myself and managed the hour long drive back to Brockville with composure. Again, funny, the details I do and don’t remember.

At about the same time, I found out that the “spots”, as I called them, in my lungs hadn’t disappeared on their own. I would be monitored for another three months to see if they would grow, and if so, I would then start some sort of treatment for them.

So, my “Let’s do this, let’s fix it” attitude took a nose dive from there.  Luckily the cancer centre has great access to free social workers for counselling. The record playing in my head was that I was only 47, how could all this be happening to me? 

“The record playing in my head was that I was only 47, how could all this be happening to me?”

My boyfriend is a strong believer in cannabis.  After educating myself about it, I have to agree that it has many medicinal benefits and has been used for centuries for medical reasons, well before it became illegal (and now legal again here in Canada and increasingly around the world).  

I illegally, at that time, obtained cannabis in an attempt to treat the cancer holistically.  Some of you may have heard of Rick Simpson oil or Tears of Phoenix. 

If you, or someone you know, have cancer and are contemplating trying cannabis, I invite you to research this further.  There are now many CBD and THC varieties on the market.

I had the 70% THC. 

My cannabis use was very limited before I tried this treatment, so it took very little to get me high.  The initial dose was the size of  half a grain of rice, and the goal was to get up to 1 gram of this dark, tar-like cannabis oil per day and maintain that until I had ingested a total of 60 grams over a 90 day period. I tried, I truly did. 

I do not remember much of June of 2017, other than the fact that we got a rescue  kitten named Bart to help me with my sudden bouts of debilitating separation anxiety.  I think after a month, I could no longer continue because of the paranoia and anxiety it induced in me.  Scans shortly after showed growth in my lung tumours, so the little I did ingest did not help. 

So, here’s the thing; although it is in my lungs, it is still considered kidney cancer- even though my remaining kidney is healthy and cancer free.  So treatment is based on what works for kidney cancer and all cancers are treated differently. This is often confusing for family and friends to understand.

In the case of kidney cancer, traditional chemotherapy and radiation are not proven to work, so that wasn’t even an option for me. 

We decided on a drug called Sutent, which I started about 6 months after my surgery. It is the first line of treatment and can work wonders, but it’s hell on the system.  Despite several months on it, significant hair loss that resulted in having to cut what was left of my hair (see before & after pictures above), nerve damage to my feet, back and neck,  sensitive teeth, tongue and dry mouth, and one emergency hospital visit due to a headache so powerful that I thought my head would explode, the tumours grew

And had spread to my bones.

This, too, was a doctor’s appointment that I made the mistake of attending alone.  Because, you know, I was still trying to be superwoman.

The grief overwhelmed me on the one hour drive home.  That’s the thing about these long drives, you have time to think and magnify it in your head.

My drive consists mainly of two major highways and I could not safely pull over.  I scrambled for Kleenex in the car, tears and snot running down my face, co- mingling, sobs wracking my frail body. 

Yes, frail. All my life, I’d prided myself on being strong. Sturdy. Fit. Active.

Damnit. I was doing fine writing this story until I got to this part.  

I’m not quite sure how I made it home. I suppose I didn’t really even care if I did or didn’t, but thoughts of my son pulled me through.  I could not leave him motherless so young.  He does not know this, but perhaps he’ll read these words now. If so, I’m so sorry for any emotional pain he’s had to experience because of me.

Photo courtesy: Mohamedhassan

Luckily by this point, I had started my yoga and meditation journey.  It helped me through many dark days and to regain my strength and sanity.  I had watched as my oncologist scribbled treatment options out onto the paper sheet covering the hospital bed in his office and my brain scrambled to make sense of it. I took that sheet home and kept it for reference.  I still have it somewhere, but also took a picture in case it got misplaced.

There was this wonderful thing on the market that was gaining popularity and much press.  Oddly enough, it had been around a while, but only more recently have we hearing about it.  It was my next treatment option; we decided on immunotherapy.

My treatment options, scribbled on hospital bed paper

Immunotherapy. 

How my oncologist explained it was that cancer cells have this protective shield around them.  Immunotherapy  helps “open up” the shield, allowing your own system to do what it’s supposed to do; penetrate it and fight the evil shit that invades us.  

Yes, I’ve had dark days in the year that’s passed, but luckily very little side effects from the Immuno. I’ve continued to remain positive and I’ve continued my yoga and meditation journey.  There’s increasing research that links how the effects of these three things combined can help destroy disease. 

Further combine that with Immunotherapy, and great things have happened. At my last scans, the tumours in my lungs were “minimal” and the cancer in the bones have not grown further.

Today, I continue working on being physically and mentally strong.  I have become a certified yoga teacher in order to enhance my own knowledge and to be able to do yoga safely due to the nerve damage and cancer that remains in the bones, leaving the bones at risk of injury.

I hope to learn more about safe yoga for various cancer patients and to maybe one day be able to give back to this community.

For now,  I practice daily and watch webcasts or listen to podcasts on topics relating to yoga, meditation, eating right, herbs, essential oils- anything that might help me beat this son of a bitch. 

My reality is that stage IV kidney cancer seldom goes into remission and survival rates still aren’t the best.  But I’ve surpassed 22 months by 7 months already. I’m going strong and I know that every year that passes, new treatments are being discovered.

Yes, I have my bad days, when I’m sad, bitter, or angry. This is at odds with my yoga training, which teaches us non-attachment. We are a spirit within a body that we should not get attached to. But I’m new to this, and I still get angry. I still cry. I allow myself to “feel”, then I let it go, the moment passes. Life goes on.

After my monthly bloodwork and my bi-weekly immunotherapy infusions, I usually wear a superhero band-aid to cover the puncture marks to remind myself: I am superwoman. And anyone fighting this madness is super too, regardless of what stage they’re at in their fight. Yes, it sucks. Life gave us shit to deal with. But we are warriors.

By sharing my story, I hope that I’m able to touch even just one person’s life. To resonate, inspire and motivate.

Namaste. Peace, my friends.

Photo courtesy: Power Of Positivity

For anyone suffering from cancer, I invite you to read “Yoga for Cancer” by Tari Prinster. Whether or not yoga and meditation interests you, there’s some great information in there about what actually happens inside our bodies.

https://www.amazon.ca/Yoga-Cancer-Managing-Improving-Survivors/dp/1620552728/ref=sr_1_1?keywords=tari+prinster&qid=1563131088&s=gateway&sr=8-1

If you would like to share your own story, please contact me.