*I began writing this blog post last month! So much happened and I was unable to complete it.  I am now home, and enjoying some much needed time with my family.  All treatments in Calgary have been suspended for now because of risk of infection etc.  I am currently getting a new UVB treatment in addition to medication and check ups in Calgary in hopes of keeping the GVHD at bay.  So far so good.  Here is the post from last month and some information that landed me where I am today.

We have all heard it before.  “What does kill you makes you stronger”.  Some days I feel like this

And…some days I feel like this…

There are days when I question everything.  I wonder if all of these uplifting messages are meant for someone else because I still don’t have my superhero cape, and I haven’t quite figured out my superpowers yet, unless you can just count living as a superpower.  Then I am reminded of why I am fighting.  Why I haven’t just given up.  Why there has been 7 years of difficulty and ups and downs for everyone around me.

As with every day life, the notion of “What doesn’t kill you makes you stronger” applies to emotions too.  We have a tendency to hold things back, or to hide some emotion for so many reasons.  Sometimes we think it makes us appear weak, or vulnerable.  Some people are uncomfortable with any attention crying or opening up emotionally may bring.

The last 2 weeks were an example of this for me.  What an emotional rollercoaster.  Things were going well.  My Grandma was back from her winter home and I was so happy to be able to see her face to face again.  My baby girl was turning 15, and I was planning on surprising her on her actual birthday with a 5 day visit.  The Doctors were in on the plan too, and doing everything to get me home.  On Tuesday April 19th, the car was packed and my bags were in it and we headed to the hospital for one last treatment (photopheresis) before hitting the highway.  I wasn’t feeling well, so I wasn’t totally surprised when they ordered a CT scan “just to see” before I left.  Well, that CT lit up like no other before.  Pneumonia,  an abscess in my throat, and a blood clot in my head.  Needless to say I was admitted to hospital and didn’t get to go home for the surprise.

I cried.  I called Shaye, and I cried.  I told him when the birthday was all said and done, and the weekend came, I needed him in Calgary.  I don’t do that often because I feel like I need to be stronger than that and able to handle at least the emotional stuff on my own because he has enough on his plate.  But in true Shaye fashion, as soon as he was able to get out on Friday, he came, and I cried.  A lot.  Then on Saturday after he left my side for the night, I cried with  stranger.  A nurse I hardly knew held my hand for what felt like hours.  Just the thought that he would be leaving again the next day set me off.  I just let everything get so big.  By the time I was done, and had a chance to sleep, I WAS stronger.  That night reminded me again why I am fighting.

The following week was tough.  IV antibiotics every few hours.  Doctors said I was essentially safer OUT of the hospital than in because my immune system was so compromised, but I couldn’t get out often because it felt like I was forever attached to an IV pole for antibiotics.

My friend Bridgette came back to be my caregiver, and we were finally able to go back to Edmonton on April 28, for my birthday weekend.  The pneumonia was clearing, the abscess was nearly gone, and I was on blood thinners for the blood clot.  The GVHD was under control. 

Sunday evening, we were preparing to leave early the next morning, when my friend and caregiver, Bridgette fell down the 2 front steps at my house, and injured her foot.  She spent the evening in emergency.  She didn’t get much information about her injury, but decided she needed to go home the next day, so she drove herself back to FtMcMurray.  That is when the fires started, a rather large fire people had started talking about, but with no real idea of what was to come.  She arrived home in the early evening Monday May 2.  The next morning she received a call from the hospital in Edmonton letting her know her foot was broken and she needed to go to the FtMcMurray hospital for a cast.

In the meantime, I drove to Calgary with my Mother in Law a day late for my appt, but the BMT clinic was wonderful and accommodating as always.  It was at that appointment they decided I needed a break from the Photopheresis treatments because of infection risk with the central line and the added immunosupressant nature of the treatments themselves.  I was nervous and scared, but in the moment, decided to Let go and Let God.  The one thing this news did mean was more time at home.

Meanwhile, in FtMcMurray, Bridgette returned home from getting an air cast to find out there was an evacuation order for her neighbourhood because of the growing fires in FtMcMurray.  Her husband was at work at the CNRL plant and had no way to get to her (they are bussed in and out daily), so there she was trying to evacuate and assemble her children and whatever belongings she could grab without the ability to even descend the stairs in her home unassisted.  I learned of her situation as we were driving back to Edmonton, and was trying to keep her updated with social media postings (ie road closures, evacuation instructions etc) as she was packing up.  It was a scary night for all, but in the end, they were all reunited and stayed at one of the camps North of FtMcMurray on that first night.  We joke that the broken foot was actually a blessing because it was a contributing factor in getting her and her family on one of the first flights out to Edmonton, along with their pets.

In the next few weeks, the Graft vs Host Disease returned on my skin, so I started a new, less invasive treatment in Edmonton (UVB light therapy) it seemed to stop the progression immediately.  Shaye ended up going to FtMcMurray for a week, and Bridgette’s husband was flown back in and out before families were allowed re-entry, which made for challenging weeks for both of us, but with our superpowers, and help from the amazing community surrounding us for different reasons, we have made it through so far.  I was so proud of myself for handling that week with the kids at home, and the strength I found.  My only wish was that I could have done more to help Bridgette’s family as she had done for me and mine.  I understood that “helpless feeling” everyone keeps talking about.

At my next check up in Calgary, it was decided to maintain the status quo, and keep going as we were for the time being.  It is looking as though Shaye may be heading back to do more reporting as families start returning to their homes.  Bridgette’s family’s home(s) all look to be in good condition for now, they will know more when they can re-enter in the coming weeks.

Peace & Love,

Trish xo