“My Voice” by Lindsay Reakes

Lindsay Reakes - 'Survivor'

My cancer journey…and nightmare started in 1999.  I was 16 years old and invincible.  I had rocked the SAT’s after being the only person in my school to write them and I was offered softball scholarships in the U.S. to play college ball.  I hadn’t felt like myself all year, but any doctors I went to just kept telling me that it was a lingering post-concussion syndrome, headaches, or just working too hard with school, work and other activities.  I agreed since it was my senior year of high school and I just felt constantly worn out (I even passed out a couple of times).  Still, I didn’t pay much attention to it.

The pain became so unbearable one night at work that I was taken to the emergency room.  After my first (and definitely not last) morphine trip, we convinced the doctor to do something other than just write a prescription for pain killers.  I was scheduled for a CT scan and afterwards an MRI, both on my 17th birthday on November 12, 1999.  I was told to go home and the results will be ready the following Monday (can’t be that bad then).  Get called on Saturday to go to the other hospital in the city for Monday.  Went in Monday morning when I’d really rather have been at school.  Two doctors come in the room and I’m starting to get a little worried wondering what’s going on.  They wanted a biopsy of a mass in my neck.  It was too close to my brain stem so they wouldn’t cut it out yet.  Finally they tell me they don’t want me to worry because it could be nothing.  Not sure how, but I went to school after that.  Biopsy was on that Friday; I can still feel the pain to this day.

While waiting for results I think I got 14% on a math test; I just couldn’t focus.  By this time I slept through classes and was a terrible student.  A week goes by and my mom gets a call for me to come down right away.  For the entire drive to the hospital which seemed like a 4 hour drive (it was actually 10 minutes) I cried and thought that I must be dead.  I feared I must have a brain tumour like my grandpa did when he was 36; I’m going to die!  Seeing the doctor when I walked in, I knew it wasn’t good.

The conversation with the doctor was a blur, I don’t remember much.  Diagnosis:  Diffuse Intrinsic Brain Stem Glioma.  I was starting chemotherapy on Monday and have radiation shortly after.  No surgery.  I was told I could probably graduate high school, but wouldn’t see past my 19th birthday.  Somehow, once again, I went back to school for the day.  All I could think was “It’s my senior year; I can’t afford to miss school if I want to graduate.”  I started chemotherapy the next week, after school, 3 days a week.  I tried to be as active as possible but my body was swollen and I couldn’t eat (it was tough enough just to go to school).  I wrote to all of the schools that I had applied to or been offered scholarships and explained what was happening and I made a decision to stay at home for university.  I didn’t initially notice, but first friends and then family became very distant.  Faces were put on by everyone and I felt incredibly alone.  Then it hit me hard as I was getting my diploma.  I had my moment.  I walked across the stage and got my diploma to the cheers of the crowd, knowing my situation.  I left the stage and stood alone.  No one would talk to me.  As the summer went on, I alternated between chemotherapy and radiation.  My parents were too busy planning hospice care and death.  I couldn’t be out celebrating with my friends, preparing for university, or anything.  I developed an allergy to the sun from treatment so I spent the whole summer indoors.  I started university in September and by October it was too much for me to face classes.  I dropped or failed all of them and worked a part time job to have something to live on during treatment when I was at home.  All of a sudden the New Year brought more fear; I had no school and no health coverage as I was now 18.  Granted, in Canada, testing, diagnosis, etc. are generally covered but any medications, travel, were largely not covered.  I couldn’t get supplementary coverage, so I had to take out a loan.

The loan started small so I could pay for medications.  It started to balloon out of control.  My oncologist thought that surgery would be able to reduce the size of the tumour (after having a year of treatments) so maybe it wasn’t as dangerous as initially thought.  Finally a ray of hope.  No one in the area could perform the surgery (the wait-lists were too long closer to home) so the oncologist schedules me for surgery in Montreal, 3000 km away.  No one wants to come with me due to their own reasons and I have to pay for travel on my own.  The loan increased exponentially to accommodate everything.  I only spent four days post-surgery in Montreal before I decided to report back to the hospital at home.  In a neck brace, bandaged up, and without approval, I flew home and went to a concert that night, then reported to the hospital.  Ah the joys of being 18 and naïve, but I never regretted it.  It gave me a bit of happiness in my complete world of darkness and bleak vision.  Once back to the hospital at home, everything becomes a flurry of excitement as I kept going for tests and chemotherapy.  Radiation was to start again once the surgery scars healed enough.

Finally a light appeared at the end of the tunnel…chemotherapy treatments are to end in February 2002.  In a flash I’m discharged and expected back monthly, in remission.  For the first few months I was haunted by tests at the hospital and unable to sleep until results were received.  Slowly, things started to calm down.  Then I realized I had a huge debt to pay with no money.  I finally found a full time job I could do.  Life started to look up for me briefly until I turned 21.  I was kicked out of my house with a huge loan and scared my health will fail again.  I make the decision to move in with my boyfriend to try to save myself from complete financial ruin, but still have nothing for myself to the point where I sleep on the floor unable to buy a mattress.  As bill collectors start calling, my dad and I started talking again.  My parents had put away a bunch of money in preparation for my death, but were willing to pay off the loan with it and I would pay them.  I wasn’t ruined.  It was a wonderful feeling.  They apologized for not being there for me during treatment.  It felt good that my parents realized what they had done, but I still couldn’t forgive them.  I moved back home, but not long after I was once again wheeled into surgery on my own (new tumour was removed from my leg, but no further issues found).

Then a friend walked into my life and totally changed me.  He was sheltered and didn’t seem to know anyone with any illness.  I knew the loneliness and abandonment when people didn’t understand, but I felt I had to disclose this to him because he was becoming a very close friend.  He accepted it and for the first time ever, someone accepted me for me.  I slowly started being able to talk about everything I had bottled up for so long and it really cleared the air with everyone around me.

I had always been scared to go back to school because of the possibility of getting sick and having to drop out again.  Since I turned 19 and surpassed my initial prognosis, I have had a dream of becoming a radiation therapist and psychologist, then working primarily with young adult cancer patients to help guide them so they don’t have to go through the hassle and pain that I did.  This friend and I made an agreement that we would go back to school together and fight to keep it up as best we could with each other’s support

I went to school for the first semester but got worried, so I took the winter and spring semesters off.  Everything was still coming back clean so I started to convince myself that I could to it.  Working full-time and taking three classes was my first goal.  I was extremely tired and sick for the last half of the semester; I just chalked it up to working so incredibly hard and being so busy.  It didn’t pass over Christmas break; it got increasingly worse and I started to panic.  This time I went for tests and wouldn’t take “no” or “we didn’t find anything” for an answer.  I had plans!

Finally, March 18, 2009 the hammer dropped.  Stage 2b Multiple Myeloma.  Well that explains the kidney problems!  The second opinion stated the same thing.  We immediately started treatment and because of various support networks, I was exposed to people who were more involved in treatment.  Most of us are encouraged to just move through the system.  Not this time!  I actively researched the disease and medications.  Red flags started rising; these chemotherapy medications seem familiar.  I dig deeper into finding out what’s going on.  The information that I’m finding shows that the medications I am taking are used for Brain Stem Glioma, NOT Multiple Myeloma.  Armed with this information, I marched to my oncologist to ask some questions.  I was advised that all of the treatments were correct and I was receiving proper chemotherapy for the staging.

Still not happy, I request a 3rd opinion (out of province) which is much easier now that I have employer health coverage.  I talk to several other doctors to get me connected.  I get my wish, but it is a doctor at Memorial Sloan-Kettering Cancer Center in New York.  Unfortunately, the one that can get me in is not covered.  After my last experience with potential travel, I had done my best to save money for situations that arise.  And save I did!  I had enough saved up to go to New York, take in a summit put on by I’m Too Young For This and the Leukemia & Lymphoma Society that I wanted to go to.  It took some time to work around things, but I was able to see the oncologist and have a few tests done on a Monday, make time for the summit, and go back to discuss things on Tuesday.  I was given a blood transfusion not long before I left so I would have a stronger immune system.  One of the best days of my life was that Monday; I got to meet people that were closer to my own age and I didn’t have to either build Lego with them or learn how to knit to have something in common with them!  The next day wasn’t quite as fantastic.  Going over all of my treatments, I learned I was in fact being treated for the Brain Stem Glioma all over again.  Since learning this late, the disease had spread further and was affecting more of my body and attacking my kidneys further.  I immediately phoned and fired my oncologist.  It was the most empowering thing I have ever done.  This was 2 days before I met up with Lynn for my ‘Voices of Survivors’ video.

I am in control, I will remain in control, and I will win.  Even now, I am navigating the system without a specific oncologist because of shortages in the province.  I am on MPT, and due to the progression do not currently qualify for a bone marrow/stem cell transplant.  It’s much more difficult, but I am a stronger patient because of all of this.  I still dream of becoming a radiation therapist.  I want to help others navigate the system without the difficulties I’ve had.  I also dream of being cancer-free.  Recently, I was told that the cancer has caused more lesions on my bones.  They appear on bones stretching from my femurs, through my coxar bones, up my spine and through my ribs, down my humerus bones, and now up onto the occipital and parietal bones of my skull.  Not only is the evidence on my bones, cancer is also spreading to my liver and kidneys. I was then told that without significant improvement, I would be lucky to live another eight months to a year.  Hearing this, I was disgusted.  I was angry, and depressed.  I beat the odds once, can I do it twice?  I’ll definitely do my best!!!  I fear my mortality immensely, but I keep dreaming of each step I take forward toward my goals.  I need to prove the oncologists wrong again.  Now that I am receiving correct treatment, although very ill, I am still working and going to school as much as possible.  No goals can be achieved without hard work.  I am able to tell my body to work and fight, and although treatment will take longer, I will come out on the other side quietly but more equipped for challenges I face in the future that I have ever dreamed of.  Throughout all of this, I have started swimming again.  I find ways to help my survival, in this case visualizing leaving the cancer behind while I swim away from it.  I know that even surviving I am stuck with both of these cancers for the rest of my life needing to be constantly monitored for changes.  Relapse can happen anytime.  I’m learning to live with it, but I’ve also been learning that it’s okay to be sad, depressed, angry and frustrated sometimes.  Hiding doesn’t work.  Regardless of what my body and mind are trying to tell me, I am still here.  I am and always will be a survivor.