My Fight Song and Why This Bell Matters

For all of October I was in Edmonton receiving radiation treatment. On Monday, I had my last treatment, lucky number 19. After 18 treatments with the same radiation therapists in the same room on the same machine, I was put in a different room with different therapists, because my room was running behind. In the grand scheme of things not a big deal, so even I'm surprised at how much this threw me off my game, how anxious and upset this made me. Maybe it’s because the radiation therapists I had for 18 of my treatments were the first clinicians in 8 months of care that made me feel like a person…..

Throughout my treatment in Grande Prairie, I was scheduled to see my medical oncologist once. I’ll repeat that – ONCE. And only after I had healed from my initial surgery performed by a general surgeon. The surgeon successfully removed my entire tumor and obtained great margins. Essentially I’ve been “cancer free” ever since. But, here’s the rub: I had to decide what course of treatment was best for myself without talking to any cancer specialist, without having much in the way of knowledge as to the best course of action, without completing tests that may have determined which treatment was more effective. I was scheduled to see my radiation oncologist twice. However the first time I met his resident only, who misspoke on the number of treatments I would receive, but otherwise tried his best to answer my questions. I met my radiation oncologist once, on my last day of treatment, when he didn’t have the time or inclination to answer much.

Had I lived in a major urban centre, say Red Deer, Edmonton, or Calgary, I would have had access to the Comprehensive Breast Care Program. This is a fantastic program that assigns a person a navigator to help walk them through all the steps of cancer care, to ensure that the patient is aware of all of their options, has all the information to make an informed decision, and has someone in their corner throughout treatment.

I was assigned a Cancer Navigator at the Grande Prairie Cancer Clinic once I was healed from surgery. He gave me my appointment date with my medical oncologist and taught my initial chemotherapy class (like an orientation class). In the class we were given a list of things that might happen while receiving chemo, a list of reasons to call your navigator immediately, and made to feel all happy, happy cause someone was there to support you, that you have a whole team to behind you! The reality though was that when I called, my calls would be unanswered, or I would leave a message which would not be returned until leaving days of messages, only to be told to contact the nearest Emergency Room or Walk-In Clinic. Every time I had a pre-infusion or infusion appointment, I was assigned a different RN. The reality of my treatment is that I was on my own, even when mistakes where made (and mistakes were made which were later reported). There was no “team” to help me through, despite being assigned one on paper. And there were times when I needed help.

Initially I called the Comprehensive Breast Care Program centre for assistance, but they refused because I was not in their region.

And here is where I get to the point…..

Postal Code.

The cancer care received by those in urban centres is phenomenal. Patients from urban centres are made to feel like people, like they matter, and they have a team that actually cares, a team that checks up on them and makes sure that they are ok, that listens to their concerns and talks them through.

The cancer care received by those in rural areas (for the purpose of this story, consider anywhere cancer treatment is given outside of Red Deer, Edmonton and Calgary), the treatment is very different. It can be downright scary. I wish I was just talking about myself and the care I received, but from the number of rural Albertans I’ve met going through cancer treatment, I know now that my story is not completely unique.

I have been appalled to hear of the young mom who went nearly two years of being misdiagnosed until finally getting frustrated enough to schedule and pay for her own MRI which diagnosed her with stage 3 breast cancer. Of the woman who spent hours in the ER after a chemo infusion made her so sick she lost 17lbs in two days only to not be seen by a doctor at all. Of the person who felt something was wrong in July, received a CT scan in August and assumed no news was good news only to find out 6 months later that that same scan led to a lymphoma diagnosis. Of the people who never met their oncologist at all. Of the lady who had to threaten to not leave the hospital unless some kind of post-treatment follow-up was arranged. Of the person who was thrilled with their care only because they don’t know what they don’t know.... Of every other person out there who has felt like only a mere cog on a conveyor belt getting treatment, and who has fell through the cracks…..

I am writing in case one person may hear and realize that they have to fight and research and kick and scream, and be their own advocate.

After my discouraging meeting with my radiation oncologist, I went to a meeting… a few weeks back I had attended seminar and met a doctor who put me in touch with someone from the Cancer Strategic Clinical Network (C-SCN). The C-SCN brings together stakeholders from across the province from prevention programs, health care delivery services, research institutes, and policy development groups to lead and support evidence-based improvements and bring innovation in cancer prevention and management in Alberta, to empower clinicians to provide care that is patient-focused, accessible, and sustainable.

I have been invited to be a Patient Advisor volunteer. The timing may not be great, while I still struggle with some side effects from chemo, and definitely from radiation side effects. But, I am more than pink and I have a voice, even if it may sometimes take me slightly longer to form a thought and turn it into a sentence (who knew that chemo could affect cognitive ability?), and I intend to use that voice.

“This is my fight song, take back my life song, prove I'm alright song”:

There must be reasonable access to consistent care for all who need it.The type of care a patient receives should not depend on where in Alberta they are from!

The meeting I had on Monday was regarding mainstreaming genetic testing for those diagnosed with breast and ovarian cancer. Had I had access to genetic testing when I was first diagnosed, the results may have changed my entire treatment plan. Instead, I now wait for genetic results from a private company from the States and when I receive the results I will have to make a decision as to whether I need or want further treatment.

The comments made at Monday’s focus group will have a direct impact on how genetic testing is done in Alberta, with changes made by quarter one of 2019. The changes won’t fix everything, not even close - there’s tons more that need improvement. One small, tiny, minuscule step for mankind, but one made in the right direction. If I can help constitute change by sitting at a table and telling my story and giving a suggestion on how I would have felt better treated, I’ll be on that panel every . single . time. And maybe one day it actually won’t matter if you’re from Edmonton or Grande Prairie, or Hinton, or Peace River, etc.

After my last radiation treatment, after my radiation oncologist left me disappointed, scared and with questions, he shook my hand, said my treatment is done, and told me to ring the bell in the halls of Cancer Institute, and once again I refused. Because I am not done. I’m still healing physically and mentally, and hell, I still may need more surgery.

But I did ring the bell at Sorrentino’s Compassion House, while in the company of new friends. A bell that states simply: “The Bell of Hope and Compassion” because I have more compassion now than I ever have, and because I do have hope that I will never have to grace the halls of the Cross Cancer Institute for treatment again, that my cancer will not return, and I have hope that the system will improve for those who come after me.

To those who have feedback regarding healthcare services or other support services you or a family member has received in Alberta, click the following link for more information: https://www.albertahealthservices.ca/about/patientfeedback.aspx

Why I Didn’t Make the Bell Toll

Today was my last round of chemotherapy, for that I am ecstatic. But I chose not to ring the bell.

For those who don’t know, ringing the bell signifies the end of cancer treatment. The plaque reads:

"Ring this bell three times well to celebrate this day. 
This course is run, my treatment done, and I am on my way."

And this is where I am going to get really real. It’s not all happy, happy, joy, joy, so if you’re looking for a feel good post, or something glowingly positive, click the “x” to close and move on.

I don’t really expect anyone to fully read the steroid-induced diatribe that this has become. But if on the off-chance you continue, you’ll probably learn more than you wanted to know, not necessarily all about cancer, but about me. It turns out the writing is more for me anyway, not for you. Writing is supposed to be therapeutic, or so they say....

People keep saying how strong I am, how brave I am. But I tell you, I’m not. The only thing that I am doing is what any person with a negative diagnosis would do – I’m doing everything that I can do to try and save my life. That’s not brave, that’s just doing what medical science says is my best option today (and I mean “today” because treatment options are always changing and ever evolving).

So, today I had my last round of chemotherapy, and while the bell was there for me to ring, I refused. While I may be done chemotherapy, and I hope I never have to do it again, I am far from done with this unfortunate journey.

Firstly, it will be at least a week of side effects from the chemotherapy. And then another week of my immune system being so shot that I can’t risk the germs associated with going out. I’m assuming and hoping that I’ll be one of the lucky ones who won’t have to deal with the side effects of chemotherapy for additional months, years or even forever. Time will tell. I’m not whining, I accept the ends for the means. That’s just a fact.

Secondly, today I also had a consult with the Radiation Oncologist's med. student. I knew from the start that radiation was a given with my triple negative diagnosis with a lumpectomy and I’ve been dreading this the most. I am a giant wuss when it comes to burns, and what they call “skin changes” is the most common side effect. What they mean by “skin changes” are the changes caused by radiation burns. I won’t get into it. Do yourself a favour though and never do a Google Image search for radiation side effects. Some of the side effects are short term, some could be long term, or even permanent. And hey, who knew, radiation therapy to beat cancer can also cause secondary cancer! Again, taking the good with the bad and playing the odds. There’s lots more, but I won’t bore you with them. It’s supposed to be easier than chemo for the most part, for the vast majority of people, so I’ll likely be just fine through my 15 + 4 hypofractionated radiation treatments, every day, not counting weekends. But hey, I finally get to get another tattoo!

Side note for those who don’t know the difference between chemotherapy and radiation, in the simplest of terms, chemotherapy (in my case) = injecting poison into the vein and through the bloodstream, radiation = targeting the cancerous area with a laser beam of radiation for about 10 minutes every day for weeks. Though the treatments are different, both are designed to kill cancer cells.

I also still have to complete genetic testing and genetic counselling. That’s just a simple blood test, but depending on those results, I may have still have a double mastectomy and surgery to remove my fallopian tubes and ovaries to try and prevent future cancer. And then decide if I want reconstructive surgery or not. It’s unfortunate that the wait list to complete this testing is so many months long as knowing the results may have changed my standard of care from the very beginning, especially with a triple negative diagnosis. However, hindsight is 20/20. The first thing you learn with a cancer diagnosis is that you don’t know nearly enough, and you can’t learn it fast enough.

After all those things are done, there’s still a couple really big steps left. The biggest steps really.

So next, vigilantly be on guard for recurrence. Yes, I was diagnosed with breast cancer, or what some may say “ONLY breast cancer.” As much as that phrase “ONLY” bothers me, I can see why some people say it. The fact is, the odds for beating breast cancer are great! The 5-year survival rate for breast cancer overall is 90%! And if the cancer is found solely in the breast (and I was this lucky!) and not spread to the lymph nodes or anywhere else, the 5-year survival rate jumps to 99%!

However, for triple negative breast cancer (TNBC) the 5-year survival rate falls to 77% and the odds of recurrence jump to 34%, especially within the first 3 to 5 years of the initial occurrence. Recurrence is often “distant,” with the cancer most likely to return not just to the breast, but also to the lymph nodes, lungs, brain, liver, and/or bones. If this happens, Stage 1 becomes Stage 4. The odds of stage 4 are fairly well known… Not impossible, but so tough for not that great of prognosis.

This is why watching for the red flags of recurrence become a part of everyday life. Knowing the signs and symptoms and listening to your body. A mammogram will be done at least once a year (I’ve been doing that for pretty much 7 years so no biggie there). Recent studies have shown that regular scans can lead to anxiety, wrong diagnoses, false alarms, unnecessary procedures, and more costs. My oncologist is a proponent of these studies. I, on the other hand, am not. I believe in mammograms every 12 months. I believe in having a CT Scan or a PET Scan to ensure that there are no “mets” (or metastasis) to these other areas. I will be looking into getting a second opinion. For me, NOT having scans causes anxiety; anxiety to the point of waking me at night, to the point of not being able to say the word “recurrence” without choking and tearing up, to the point of not looking for symptoms in case they’re there and I find them! So light me up! Poke me, prod me, inject the tracer, x-ray, and scan, scan, scan! At least once, for crying out loud! I’d rather have regular scans then only have scans when other symptoms have appeared, because if other symptoms have appeared we’re already behind in the fight and pushing “too late.” The same doctor already said that we have only one shot at this cause if it comes back it’s not treatable (triple negative strikes again). Her words, not mine. And while I believe she misspoke, it resonated.

Maybe I’d be more confident if I was able to see my tumour shrink. Surgery with the result of “we got it all” with clean margins and no lymph involvement is supposed to be a good thing. However, it’s a phrase I’ve hated since shortly thereafter, from the second I learned that no residual cancer means that there is no way to tell if the chemo regimen prescribed is working. That there’s no way to know if my tumour responded because it was removed fully and completely. If I knew then what I know now, I would have begged for chemo before surgery (or what the call neoadjuvant chemotherapy). At the time I just wanted it out of me and that is what was recommended by my surgeon at the time.

Maybe I’d be more reassured if I trusted my cancer team, but I don’t. The fact is, I was scheduled to see my oncologist once during this whole ordeal. One appointment does not a relationship make. Mistakes in my treatment plan were made. Mistakes that I caught, not my team. I thank God for the 12 years of pharmacy training I had which exposed me to medical jargon and research, and for my relationship with nurses from home who I could bounce ideas and terminology off. This particular Cancer Clinic was nearly inaccessible in the event of the occurrence of a fever or emergency from the long list they give you and say to “call us if this happens,” and when you do get through, they direct you to the nearest Emergency room or walk-in clinic, who then has to wait for treatment feedback from the Cancer Clinic anyway. Then there is no follow-up from the Cancer Clinic, which made me thankful that I found a family doctor who cares, because after each ER visit his office took the time to follow-up every time an email pinged with a new test result regarding me. That was not his responsibility, so I am grateful. I’m told the mistakes and confusion happen at this Cancer Clinic because they are so overworked. In this city alone, 3 people a week are diagnosed with breast cancer. JUST breast cancer, never mind any and every other cancer which is also treated here. Mistakes are not acceptable, not when that mistake could prove to detrimental to the difference between life and death; “to err is human” be damned.

2/5 star rating for this Cancer Clinic. They’ll get the job done, but make sure your knowledgeable enough to be your own advocate, don’t be afraid to speak up, and don’t let yourself fall through the cracks.

I also don’t understand the protocol and chemo regimen that I completed. I don’t understand why Alberta has a different and seemingly less aggressive treatment protocol than pretty much everywhere else for one of the most aggressive breast cancers, triple negative. I accepted it when treatment began, but I’ve learned too much since to be wary of it now. Maybe if I saw my oncologist again I’d ask her, though I’m not scheduled to see her again. Score 3 for Hindsight; High score for things that keep me up at night.

Which leads me to that last step:

Finding my new normal. I’m not even done treatment and I already know that my post-treatment normal will not be the me that once was. In some ways good, in some ways bad. I’m confident that most if not all side effects will recede – neuropathy, fatigue, ‘chemo brain.’ I’m more compassionate in some regards, and if not that, than I at least don’t let things bother me as much. They say “don’t sweat the small stuff” but you don’t really get what that means until accosted by something big, and what’s bigger than confronting your own mortality? The thinking about mortality leads to fear. Is it a headache, or is it brain mets? Is it a gastro thing, or is rib pain, if it’s rib pain, is it bone mets? Did I pull a muscle in my neck or is it lymph or thyroid cancer? Am I going to die? What will happen if I do?

The face of cancer treatment:
After & Before

So, this is the long story of why I didn’t ring the bell today. It’s why I didn’t bring cupcakes and sparkling apple juice to celebrate the end of chemo and to thank my team. Cancer changed my life, it put me on a new path, and quite frankly, I’m feeling pissed, not celebratory. I look like Uncle Fester and I’m anxious, and I’m insecure. That’s not me, that’s not who I was. And while I’ll get over the Fester-look, cancer is unpredictable, and there’s no real “end.” I may get used to being a cancer patient, and I may learn to cope with the physical and emotional scars, survivor’s guilt, and the fear of recurrence, but I’m pretty sure I won’t 100% return to the me that I once was again. For those who may now be slightly worried, I did see a counselor of sorts today as well, and have been referred for more sessions; maybe not talking about all these emotions for the last 6 months wasn’t the best idea, but talking about feelings is, after all, in direct opposition to my normal stoic self.

So instead of a bell I’ll say, in a slightly plagiarized and bastardized re-write of a post from a fellow breast cancer fighter:

Dear Chemotherapy,

As of today we are broken up. Kaput. I’m done with our love hate relationship.

I hate the things you took from me, my summer to start small, the ability to swim in my favourite lakes and play rounds of golf, but also my confidence, my unafraid contentedness, the hair loss from every conceivable part of my body which just screams “cancer,” and likely my ability to have children (which turns out, once you’re told you can’t have them is a big game changer in the mind of the child-free). I hate the paranoia and sleepless nights and the moments when you reduced me to tears and made me feel hopeless, insecure, confused, lonely, and made me realize why some people just give up. I hate how vulnerable you’ve made me feel.

However, with you I also found much love. I love that Chemo has provided me a deeper level of compassion. I try to interact more with strangers, listen more closely, try harder to help. It’s true, you never know what people are going through and how your one small gesture can make a difference.

I love that Chemo has humbled me in a way that I hope stays with me the rest of my life. My belief in humanity has advanced through acts of pure altruism. Through strangers who have stopped me to share their personal cancer stories and have told me to keep fighting or that they will pray for me. These interactions are so personal they bring me to tears and will stay with me forever. Like the lady I met at a garage sale who is an 18-year TNBC survivor who shared her story, and that of her sister who is now a 5-year survivor; who said with full conviction that I will be ok. Or the man from the mall, and again from Costco, who stopped with tears in his eyes just to tell me to be strong and keep fighting, to tell me that I am beautiful. Through the Pastor who prayed over me, asking for healing and strength. And the reconnection with an old friend who is now a 4-year survivor, who has walked with me, cried with me, prayed for me, and helped me through. There’s so many more, I can’t possibly list them all, so to all the friends, family, acquaintances, fellow survivors, coworkers and even strangers who have taken time out of their day to provide me food, kept me in cards and letters with uplifting messages, cleaned for me, stayed with me, or sent me sweet gifts - All of these gestures touch me; Giving up your personal time to help myself and Shawn, we feel more blessed than you’ll ever know and are eternally grateful.

Last but not least Chemo, I do love the healing I hope you gave my body. Although you are poisonous to many healthy parts of my body, your poison also kills my cancer. For this, I am thankful. I will always be grateful your treatment was available to me, giving me the chance to fully live my life.

So, thank you Chemo, and good riddance.

Maybe after I complete radiation I’ll change my mind and ring the crap out of that bell. Or more likely, maybe in 5 years, when the odds of recurrence for me drop to nearly NIL/Nada/Nearly 0%, I’ll breathe a sigh of relief and do a happy dance with my family doctor and the mammogram technician who had me first diagnosed so promptly. At that time though, 5 long years from now, I feel like I’ll still say “f@*k the bell” and instead celebrate by throwing on my seldom worn camo gear, grab my husband and some besties, and go blow up some stuff up with the 300 Winchester and a few boxes of Tannerite in the woods, and definitely by a lake. Summer 2023, Seton Ridge – Save the date. Maybe I’ll even blow up that damn bell, I bet those who will never have the opportunity to ring the bell because their treatment never ends due to their prognosis would appreciate that. If “every time a bell rings, an angel gets their wings,” I wonder how many angel wings would be handed out for that?

#HoleCrewAgainstTNBC #Jeremiah2911 #BreastCancer #DoYourSelfExamination #ChemoBell #YouDoYou #CancerSucks #IWillSurvive