It seems like such a long time ago since my last blog on May
28. In some ways, it is.
For those of you who have checked in for blog updates and
have persevered in your waiting, there is a lot to share with you.
Life as a surviving cancer patient has me living my “new
normal” reality--full, rich, rewarding, and at times busy.
In June, we celebrated my husband’s retirement, my mother’s 80th
birthday, and family visiting from Alberta.
July was filled with finishing re-landscaping of our back
yard. In between, there was work, work travel, and new work projects to
develop. For a good mixture, there was a couple of family friends’ children’s bridal
showers and weddings, spending time with adult kids and hearing stories of
their European and San Francisco vacations, and a week’s vacation of our own to
end the summer.
Some disconcerting health problems also arose. At my annual
oncologist check-up in May, the doctor switched my cancer blocker anti-hormone
drug (a form of oral chemotherapy) to another hormone blocker—supposedly it
gives a few percentage points increased benefit to prevent cancer from returning.
True to form, as with other cancer drugs of my past, my body
did not tolerate the new drug. After battling with allergic side effects and
being treated with steroids to eradicate them, I was put back on the original
drug. All is now well again with the chemo maintenance drug, except that with
the switch, there has been more muscle and joint pain and increased frequency
of “charley horses” in my lower limbs and feet.
My sister, the nurse, tells me this occurs because the
hormone blocker chemo drug reduces estrogen in my body, which acts as a natural
lubricant. So, I’ve been put on an anti-inflammatory to enable easier movement,
reduce chronic pain, and improve sleep. Regular exercise helps somewhat to also
reduce the pain’s intensity--all the more reason why skipping out from the gym
has its consequences.
Then there was a concerned phone call in late summer from my
family physician about elevated protein levels in one of my cancer markers blood
work tests. The fear of cancer returning was back once again, albeit briefly.
After some scurrying on my doctor’s part with the oncologist
and my liver specialist for a consult, it was determined that the elevated
markers were not a concern. I will continue to be monitored closely (breast
cancer can metastasize to the liver), as has been the case since markings on my
liver were found with MRI scans while in treatment three years ago.
I am lucky, and particularly blessed with the care I receive
from my family doctor who continues to be vigilant in my health care monitoring
and acting on my behalf. I am confident that I am in goods hands with her care.
It was a scary few weeks until the specialist consultations on the test results
were reviewed and ruled upon.
My volunteer life as a cancer patient advisor continues with
the Ministry of Health and CancerCare Manitoba’s five-year appointment to the
Manitoba Cancer Partnership Steering Committee. The provincial government’s $40
million+ initiative to improve the waiting times from suspicion to diagnosis to
under 60 days has been an interesting volunteerism and learning opportunity.
I share this volunteer role with another cancer survivor as
Co-Executive Sponsors on the Steering Committee; Co-Chairs of the Patient
Participation Advisory Committee (six cancer patient survivors) associated with
the initiative; patient advisors on the cancer patient passport working group;
and occasionally deliver a presentation/lecture to health care professionals, medical
students, or the public, speaking on the cancer patient experience.
Through the volunteering, I am learning so much about the
complexities of health care, the background behind the complicated webs of
treatments cancer patients experience, and where improvements can be made in
the healthcare system. Halfway through this project, change is starting to be
seen. It is rewarding to see how the voice of patients can positively impact
health care reform.
To date, our patient input has resulted in the formation of
a cancer patient advisory committee; improved communication of healthcare
professionals with cancer patients through the development of communication
guidelines; cancer patients telling their stories at Steering Committee
meetings as reminders about whom we are serving; improved practices in
emergency departments requiring after hours care of cancer patients who develop
complications including dangerous febrile neutropenia (infection with low blood
counts); open letters to various health care providers commending them on their
treatment of cancer patients; the beginnings of a cancer patient passport to
use as an information guide for medical appointments; and regular feedback to 10
working groups under the Steering Committee umbrella who are addressing various
improvement areas to reach the goal of 60 days from diagnosis to first
treatment.
A few months ago, upon recommendation of my breast cancer
nurse educator, I undertook training to be a breast cancer peer volunteer for
other women who are dealing with their diagnosis. Peer volunteers generally are
placed on a provincial registry, where they are matched with other breast
cancer patients with similar life or diagnosis circumstances.
In my case, because my form of breast cancer is so rare—0.1%
of all breast cancer diagnoses in the world (23 out of 23,000 annually in
Canada), my name has also been put forward as a peer volunteer on a national
breast cancer peer registry.
Within two weeks of completing the peer volunteer training,
I was matched with my first client. It is an interesting experience to walk
alongside other breast cancer patients, to listen to their stories, and to find
ways of supporting them that are meaningful. It is an experience I wish I could
have had when I was in active treatment, but unfortunately there was no peer
match available for me anywhere in Canada. So, this is important work to ease
the burden of others who follow behind me.
And in between all of this, there have been several sessions
with a personal trainer! Hard as they have been, I have enjoyed every minute of
them. There is a deep satisfaction in knowing that despite how deformed my body
became with surgery and radiation, I can make it stronger and rise up to the
challenges my trainer poses.
The workouts have been fun, grueling, and have taken me to
progressively higher levels of fitness. I am doing workouts I could not imagine
before the trainer sessions started. In the not too distant future, after I
muster enough courage, I will join the “hard core” gym folks in a TRX boot camp
or spin class. Stay tuned.
Life is good. The gift of a second life is a daily blessing.
I continue to greet each day with Strength, Courage, and Determination!