I’m just a girl.  I could be any girl.  I was just running life’s marathon like I thought I was supposed to.  I had 2 kids, a wonderful husband, great friends etc.  I had never been healthier.  I had lost 60lbs after my second child, I was running an average of 25km a week because I loved it, and craved that 30 minutes to myself every day.  I was finally making informed decisions about what I ate.  I was successful in my job.  It wasn’t necessarily the career I had once chosen and loved, but I was working hard and surrounded by great people.  I was healthier in every way than I had ever been.…when life got “flipped turned upside down”.

I started to feel run down.  My nose wouldn’t stop running.  I was covered in a strange, INSANELY itchy rash.  I developed a cough, and started “wheezing”. I felt like I couldn’t breathe.  It was like being in a constant state of severe allergic reaction without any relief. I had always suffered periodic migraines, but all of a sudden, they were hitting regularly, and with more force than ever before.  On April 26 2009, I drove myself in to emergency at 6 am because I just couldn’t deal with all of the symptoms any longer.  When I arrived, the lymph nodes in my neck were so enlarged, I looked like a chipmunk. I was admitted to hospital and spent the next week enduring bone marrow, lymph node, and skin biopsies. At the end of it all, my husband and children and I had a meeting with the hematologist who delivered some difficult news.

Hodgkins Lymphoma, Stage 4.

Ouch. That day still hurts.  The look in my children’s eyes when they heard “cancer” will never be erased from my mind.  When my room started to fill with flowers and people, the doctor could clearly see what an extensive and incredible support system I had and after some begging on our part, agreed to have me discharged to home to await the treatment plan from the Cross Cancer Institute.  But, after over 2 weeks, and no contact, no treatment plan, I started to get nervous. I felt like I had been waiting and calling forever.  Finally, The second wave of difficult news. They thought they might have it wrong.   No cancer.  Hooray, right?  I wasn’t sure how to react.  I wanted to be as elated and relieved as people wanted me to be.   I was confused.  Scared.  Embarrassed.  Why?  We had just told our whole community I had cancer.  Casseroles were pouring in.  Flowers.  Cards.  Now I felt somehow that I didn’t deserve it all.  That there were actual sick people who need all this.  But, wait a minute, I WAS still sick.  And back at  square 1.  The physicians agreed there was a serious problem, but what?

I had, however, started feeling a bit better because of a “miracle” drug they often give Hodgkins patients, Prednisone. 75mg a day.  Prednisone is an interesting drug.  It’s a blessing and a curse.  I had heard stories from the nurses that they had patients climbing the walls believing they were Spiderman.  Another nurse told me about a patient’s wife who frantically called the unit only  a few hours into a weekend pass because her elderly husband, who had always been a calm man, had just thrown a rocking chair through their living room window.  It wasn’t long before the side effects started to affect me.  I felt really edgy.  I was mean.  Snappy.  I felt I had no control over this nasty unhappy creature I had become. And I hated it.  I gained 50lbs, and was in and out of hospital regularly over the next few years every time they tried to lower the dose.  Prednisone is not safe in high doses over long periods.  I hated how I felt on it, but it was the only drug that worked to keep me out of the hospital.

The next few years were filled with many attempts at different steroid sparing agents to try to drop my dosage without my blood counts (eosinophils) rising, and a return of original symptoms.  Different forms of chemotherapies and medications, all with their own side effects, and nothing worked well enough to eliminate the steroids. In 2012, an application was made to have me sent to the Mayo Clinic in Rochester, Minnesota.  I was super excited to hear Rochester. I thought I was headed to New York. Nope, not Rochester, New York, I was headed to Minnesota.

As it turns out, Rochester is a lovely little town I had the privilege to visit twice. Shaye and I were introduced to “Peanut Butter Burgers” YUMM, and our son started collecting Minnesota Golden Gophers merchandise.

The Mayo clinic is a truly incredible experience.  The people, the doctors, nurses, everyone is amazing.  I had more procedures done in a week than I could have done here in months.  It’s just an altogether different system. I’m not knocking my physicians here in any way at all. They have all been great. They were just very frustrated at not being able to help fix me.  If nothing else, I came out of those appointments with a new diagnosis.  Hyper Eosinophillic Syndrome.  Honestly though, a diagnosis, name, or label for my condition didn’t matter anymore.  I just needed to be fixed.

Having the new diagnosis and being connected with the Mayo clinic started a new process of trying to get me involved in a trial of a new drug called Mepoluzimab.  It was a rough year of pounding on doors to try to get approved.  It just didn’t ever come to fruition, and just ended up being another big disappointment.

I was finally referred to a physician in Calgary, at the Tom Baker centre in February of 2014 with the intent of investigating whether I could be a candidate for Stem Cell transplant.  We read stories of patients with HES being fully recovered following transplant, but there was still that 25% chance of failure/death to wrap our heads around.  Over the next year, I shed many tears thinking that the process needed to be quicker.  That I was somehow running out of time.  There were so many “hurry up and wait…” moments.

Sitting here today though, I feel blessed for the delay.  I think it gave us the time we needed to have the confidence that whatever the outcome, this is what I need to do.  This IS the next step.  I’ve been ready for a while.  The extra time has given my family the time and understanding they needed to be on board and fully support me without questioning the process.  I fully recognize that sometimes being the loved one of a “sick person” is way harder than being the actual “sick person”.

We are now just waiting for the exact date.  My sister is a 10/10 match for my transplant, and she is totally on board to do what she can.  I have so many around me who feel the same.  I wish it hadn’t taken 6 years on this roller coaster for me to see how incredibly blessed I really am. I am surrounded by love.

-Trish xo