It has been WAY too long since my last update, but with the New Year upon us, I felt it was time to get back to some writing.

2016 was a tough one to say the least.  After the Bone Marrow transplant in 2015, I really hoped my health would continuously improve.  I definitely wasn’t expecting to be back in a city away from my family again for the better part of 4 months, but on January 13th all of that changed.  One year ago today, I was re-admitted in Calgary with Graft vs. Host Disease.  It would be almost 4 full months, and some of the lowest lows before I would be able to rejoin my family in Edmonton.  I wrote about the medical experience in my last few blog updates, so you want more information, please feel free to refer back to those.

I sincerely hope Capital Health starts to recognize and gain a better understanding of the toll it takes not only on the patient, but also the families of patients for the increasing number of Allogeneic (Donor) Stem Cell Transplants needed, and considers at the very least adding some of the treatments for Graft vs. Host Disease to Edmonton.  It is one thing to require patients to be away for the procedure itself, but if anything goes wrong afterward, you are basically left with the choice to abandon the treatment you require, or leave again, unless you are lucky enough to live in Calgary of course.  Rumour has it there is a machine available in Edmonton to treat Graft vs. Host Disease (photopheresis) however, it is not being used because Capital Health doesn’t think it is financially feasible  to train a physician and nursing staff to run it.  I met SO MANY people in Calgary who had to leave their lives in Ft.McMurray, Edmonton etc to be treated.  I met others who chose to end treatment because they couldn’t go.  Health care doesn’t cover the cost of 2 homes, transportation back and forth (IF you are healthy enough to travel back and forth.  If you are not, it is a constant drain on friends and family to make the trip), lost wages etc etc.  The list of added/unexpected expenses goes on.

I want to share a little bit about the realities of coming home after being away for such a long time.  Have you ever been away from work for a long period of time, and even though it is likely a stupid, irrational thought, your biggest fear is that people may get used to you not being there, and after a while you are no longer missed?  Now imagine that this long break you are taking is coming after YEARS of stress and challenges, you have no control over, but they are a reality, regardless, and without you there, they don’t exist.  You know you bring so much to the table and are a valued employee, but you just have to pray the people around you remember that.  Any fear of rejection you may have deep rooted in your soul is going to haunt you.  It has never been so challenging in my life to keep my chin up and carry on.  I will say it again.  I am so blessed to be surrounded but the friends and family I have.  Without their support, I know I would not be here today.

Then, you get to go home.  Elated at the chance to get back to “normal”.  But, what is “normal”?  My kids were 12 and 15.  They went from a 1 parent (an over taxed parent burning the candle at both ends) home to a 2 parent home over night.  I am sure anyone who has had a teenager can understand that emotions run high at that age, and changes in authority and control cause a wee bit of chaos.  We have had a bumpy road for sure, but my kids are so resilient, and I can say that 7 months later, my relationship with them is as strong as it has ever been.  It was an enormous adjustment getting here though.  I did not come home “fixed”.  I still had many medical and emotional issues I had to deal with, which meant my family and friends were still going through it with me.

A new year is beginning, and I can say without a doubt that I am starting to feel better over all physically AND emotionally.  My meds are continually being decreased, which helps enormously with side effects.  I am stable enough to see a Dr. every 8 weeks now in Edmonton which means my appointments in Calgary can move to being every 8 weeks as well.  I am booked to get another Blood Transfusion next week which will give me another boost.  The very best news I have to share is that I get my wings back!  I have the ok to travel!  There are some “NO Fly Zones” on my list…Arizona (because of a fungus in the soil), Africa, Asia, 3rd world countries.  But my Doctor even said that with some planning, I could visit my sister in Australia.  THATS HUGE!!!  Now, I need to win the lottery.  Prayers are welcomed 😉

Thank you again to EVERYONE for your continued words of encouragement, love, support, and prayer.  It is all appreciated more than I can ever express.

-Trish xo