It has felt like forever since I last posted. I am sorry for the delay. It’s been on my mind everyday, but I guess the good news is it means life is starting to happen again.

I was finally discharged from the BMT clinic in Calgary 3 weeks ago, and have started seeing the team at the Cross Cancer Institute here in Edmonton.  I can’t even adequately explain how much easier it is to have local appointments.  I will be forever grateful for the amazing nurses, doctors, and support staff, I met in Calgary.  I wasn’t prepared for the tears bursting forth as I said goodbye to them at my final appointment. (I ended up having to go back anyhow, I can assure you the second goodbye was far less messy!)

As expected, the road has been a bit bumpy.  I always seem to be creating  new challenges for my medical team, but we are definitely moving in the right direction.  I’m still treating the pulmonary embolism with daily injections.  I am also still having a bit of trouble still with my racing heart, so I have been referred to a cardiologist here and we will investigate whether it is connected to the embolism or just a result of the years of Prednisone use.

I have also developed some Graft vs. Host Disease.  I started getting a wee rash a few weeks ago, and it quickly spread.  Here is a photo.  It was a very angry rash, not comfortable at all, and it just kept spreading.

Sorry if that is too much info for some!

After a biopsy, and another trip to Calgary, I was started on high dose steroids, yet again.  Ugh.  I was so happy to hear it wasn’t measles, or some thing I may have passed on to someone else.  I also felt blessed there was a treatment because the itching was starting to make me crazy.  At the same time, we were scared.  GVH can be a terrible thing, and can put the entire transplant at risk.  But more good news was on the way. The GVH showed up well after the typical period for acute GVH., which would tend to indicate chronic GVH, a far more troublesome diagnosis. Despite this,  the medical team is fairly certain it is acute GVH. Which can be treated and dealt with.  I really do think this is because  I was so fortunate to have such a great stem cell match in my sister,  Christi.

So I am slowly recovering from this latest bump.  The new meds have made me ravenously hungry again (Better than the nausea on the flip side!), and I am a little irritable.  Ok, I’m a lot irritable. Thank God for my supportive network of people who understand my need to hide in what I call my “blanket fort”, and try not to “poke the bear” unless absolutely necessary.  It’s probably best for everyone involved.  I posted this photo on Facebook one day (pretty sure I should be banned from social media sometimes).  This guy says EXACTLY how I feel!

One of the new meds I’m taking to handle the GVHD is cyclosporine, which further reduces my immune system, so I am now battling a respiratory infection among other minor issues.  I keep hearing from people who wish I was just “better”, and I guess I do too, but here is the thing… I DO feel better!!  These are things I can totally deal with, and that light at the end of the tunnel is getting bigger and closer all the time. One of my doctors explained it so well the other day.  She said that once I am released to “home”, even though we KNOW there is no light switch that flips to say I am “fixed”, I tend to put that expectation on myself at times, as do others.  Not in a bad way at all, just wishful thinking.  I know how kind all of the hearts are surrounding me, and everyone wants me fixed yesterday.  If it helps with expectations, she said it would be at least a year before we can expect the “normal” switch to start flipping.

For now, I will keep my eye on the light.

Peace & Love xo

Trish

Ps.  Just one more thing.  I picked up a new wig the other day.  My hair is really starting to come in now, but patchy.  If you see this girl, it’s me!  Stop and say hi 😉❤️

It has been a busy couple of weeks getting the kids back to school and Shaye back to work.

My body has been doing everything it needs to fight the Epstien Barr VIrus, and the doctors are very happy with my blood counts.

I was able to spend a weekend at home.  It was so nice to be back in my own bed again with all of my family in one place, even for a few days.  I was only given a pass for the long weekend, so unfortunately, I had to say goodbye to Shaye and my children and head back to Calgary.  I kept being asked why I have to go back if I am doing so well now, and my answer was always that I don’t always know what is coming, and given how quickly and out of the blue the EBV virus hit, I feel more comfortable right now following the rules than questioning them.  I’m glad I came back.  

My pulse had been high all weekend.  My blood pressure was spot on perfect, but my heart was racing after doing things as little as going upstairs.  I called the clinic in Calgary from Edmonton and explained what was happening.  The doctor recommended I change a couple of my medications and watch for a few things, otherwise they would assess at my next appointment (today).

When I went in this morning, my resting HR was 133.  They had me stand up and it just kept rising.  I was sent down the hall for a CT, which showed a pulmonary embolism (a blood clot in my lung).  Just like that.  If I hadn’t been a BMT patient, I would have been sent directly to emergency, but instead, I am part of this incredible “umbrella” of doctors and nurses and I was sent back to the BMT clinic.  They assured me how good it is that we know what to fix, and explained the injections I would have to self administer for 3 months.  Then I left.  That fast.  That’s why I’m still here.  Because stuff happens.  Stuff I’m not familiar with.  Stuff that’s no big deal, but it can kill me if not discovered and treated.  Sometimes you just have to trust the system.

I miss my family terribly, but I am in the best place for me right now.  Because of technology I am in touch with them several times a day, and I am blessed to have other family to fill in as my “caregiver” in this final month.

Peace & Love

Trish xo

I haven’t written in a while.  To be perfectly honest, I feel as though there needs to be something positive to expand on or the therapeutic process is lost.

The last two weeks have been a roller coaster ride,  (there were times my head and tummy didn’t leave that rollercoaster for days).  At times, I felt I had lost all progress.  I was once again dependent on a wheelchair to get around, and didn’t leave the house except to go to the clinic.

My doctors discovered the Epstein-Barr virus before I even knew what was coming.  They saw it in my bloodwork.  1 out of 4 transplant patients have to deal with it reactivating in their bodies, and in 90% of those people, a chemo drug called Rituximab works quickly.

The worry really started when my numbers doubled, tripled, and just kept going in the wrong direction even after three doses of Rituximab. Even worse,  the viral numbers and the way I felt, physically, were beginning to match up.  My neck was swelling (lymph nodes getting bigger).  I had pain everywhere with new nodes popping up.  The nausea hit a whole new level.  Fevers were keeping me up at night.

I was scared.  I always felt I was in good hands, but this time I was scared.  When the doctors interventions don’t  work and you are only getting sicker, it’s hard not to let the fear grab hold, even just for a bit.

The doctors had one more plan up their sleeve.  They were going to harvest Lymphocytes from my sister and give them to me.  This felt positive.  They called Christi who packed up her beautiful girls and made the trip to Calgary.  Barb (other sister) flew in from Australia.  She was hearing something in me that said she needed to be here.  Barb arrived first, I guess I was pretty out of it that night.  She and Shaye took me to the clinic appointment on the day Christi was heading down, and to our surprise, they said my bloodwork showed a drop in the “viral load”, something was happening.  They were going to have a big meeting to discuss cancelling the lymphocyte procedure that afternoon, but thought they may want time to see what my body is going to do.  We went home confused and a little bit concerned.  Worried that maybe my body looks like it’s starting to fight, but maybe not well enough?  My sister and her family have gone through all the trouble to come. Now what?

The next morning we received the most incredible news yet.  Literally JUST in the nick of time, they found lymphocytes MADE BY ME fighting the virus.  It took a while, but I had some fight of my own in there and it was starting to show.  Best. News. Ever.

What now?  The lymphocyte infusion has been cancelled. I’m back on track. I continue to put one foot in front of the other, enjoy as much time as I can with my sisters, and remember to “let go and let God”.

When I apologized and thanked Christi for coming, she said “meh, maybe God knew you needed your sisters, so he took you to a place that made that happen, and carefully brought you back again”.  She may have been right.

Peace & Love

Trish xo

It has frankly been another tough 2 weeks.  I developed a small amount of graft vs. host disease (a little bit of this is a good thing).  

Then came the virus. 

My Doctors test my blood every week for those big viruses that lay dormant in our bodies just waiting to activate.  You know, the big ones like chicken pox, shingles, Epstein Barr (mono), etc

One of my numbers shot up, so they basically knew it was coming and had formulated a plan before the symptoms started.  I get high fevers at night only.  Fevers are tougher in adults, I swear!!  I have lumps all over my neck (lymph nodes…ouch!). You know when your glasses are too tight and you get that spot behind your ear that hurts to touch?  It’s like a bunch of those all over my neck.

They have started a new chemo drug aimed at dealing with my B-Cells cause I don’t have enough T-Cells to do the job.

So, they seem to have this under control, and I’m still putting one foot in front of the other to get to my 100 days and return home. Day 54!!!  More than half way!

Trish xo

Peace & Love

When purchasing meds this week, I came across a situation I think everyone should be aware of.  Short of demanding a refund, I’m not sure what else you can do should you find yourself in the same position.  It definitely reveals a flaw in the system.

The drug  is Ondansetron (Zofran).  It’s an anti-nauseant commonly used during chemotherapy. It has tons of other uses too, it was given to my son in triage at Emergency a few weeks back when he had a migraine and he had been using their garbage cans as personal barf buckets.  It worked almost immediately and we went home without seeing a Doctor!  Ok, I’m getting off topic a bit (bear with me, I tend to do that!)

The first time I purchased Ondansetron was at the hospital Pharmacy when I was being discharged.  It is a popular pharmacy chain that usually gives air miles. (Except for this one!   Because it’s a “small independently owned” version, but still bears the drug store name.)

The price of the Ondansetron on that day was roughly $250 for 42 pills.  

I had a very bad week for nausea and was placed on a different drug, then back on the Ondansetron so I needed to fill a second prescription on Aug 8th, roughly 3 weeks after the first batch.

The price of the Ondansetron on August  8th was $503 for 42 pills!!!!!!

This was the same company, same drug store chain, 2 different locations. There were no insurance issues to be dealt with either, so it wasn’t a matter of the insurance company not paying for something.  The second batch was purchased at a location close to our apartment.

Same company, 2 different locations, roughly $250 difference. DOUBLE.

We would likely never  have noticed. But I keep records and receipts, and want to know everything, so I asked Shaye for the documents on the 2nd purchase.  Something wasn’t sitting right so I compared it to our previous purchase.  I was blown away when I noticed the discrepancy.  Then I was angry.

We photographed the receipts, posted on the company’s website and asked how this could happen.  No response.  We went to the local pharmacy the next morning.  The pharmacist was super friendly and apologetic and refunded the difference between the two.  That was a good start, but it wasn’t about the money.   We submit for drug reimbursement, so sure the money upfront makes a difference, but at some point we would have received a percentage back either way. 

I wanted to know how to prevent this from happening again and I wanted to know how it could happen in the first place.  He explained that it was a “system error”.  The “system” determines the price of the drug plus dispensing fee when the drug comes into the “system”.  He explained his frustration when people come in with these discrepancies angry with the pharmacist, when in fact, the pharmacist has no control over the pricing.  He also said that it occurs across all companies, not this particular drugstore.

I know most people have benefits which take care of the bulk amount right off the top, however, we have to ask who pays for this in the end.  We do. With premiums. I asked how we can protect ourselves.  The answer was simple.  We can’t, really.  You can call around to different pharmacies to get the price of your drug prior to purchasing it.  But are we really going to do that?  I worry for people without benefits, on fixed incomes, in a position of need, who unknowingly buy a needed medication at double the price they would have paid down the street, or at the same pharmacy 3 weeks prior.  At least when our other necessities like Gas goes up, we know about it right?!

Here is a copy of the regulations on pharmaceuticals in Alberta.  According to this, it is hard to understand how an error like this can or does even occur.

  

I would love to take this one on and get more info from our insurance companies, the government agency, etc, but I’m out of energy for this issue.

Peace & Love

Trish xo

I am having a wee bit of difficulty maintaining the positive right now.  Don’t get me wrong, I still count my many blessings, how can I not?  I am surrounded by love.

BUT

I really miss home right now.  We had a tough conversation with the doctor Thursday.  I had totally convinced myself somehow that they would send me home early.  Why not?  I’m rocking this right?  I’m working as hard as I can.  I was released from the hospital early.  

Well, here is why not.  Apparently there are many things to come I am not aware of.  Funny, I thought I knew everything!  (You can laugh now….no, I am not a physician, not a nurse, just have a 6 year hands on education in Auto-immune Disorders, Inflammation, Blood Disorders, Chemotherapies, drug side effects etc) I thought all that made me brilliant.  Guess not.

I  am only Day 42 of 100.  The next few weeks are critical for a few reasons.  Graft Vs Host disease is just beginning.  Not a bad thing, we WANT to see a bit of it.  However, it is something that needs to be monitored and controlled.  Also, infection and illness.  Christi’s stem cells grafted well, my body took over and we created everything we need.  All of my blood levels (white cells, platelets, etc etc) which were at 0 on June 26 are now in the normal range.  That’s amazing.  Christi is an over achiever, I never had any doubt.  But I don’t have any control over what happens next.  My immune system is like a brand new baby’s.  Someone coughs, I will likely catch what they are handing out.  I am also very susceptible to the big ones…chicken pox (I paid those dues as a child…doesn’t matter now, the slate has been wiped clean.  I’m a baby) Shingles, Mono, they are all super dangerous and those viruses just lay waiting for a situation like this to go wild.  I can start immunizing again in a few months, but some (the live ones) can’t be done until 2 years from now.  My kids are excited about being able to take me for my “shots”.

The last week has been rough.  I’ve had fevers, headaches, and my energy is down.  Liver enzymes are off, kidney, and cyclosporin levels too.  I’ve been called in Monday for additional tests.

Sometimes we can be as positive as we want to be, but we have to admit we can’t control every situation.  We can’t make things happen on our schedule.  The attitude helps get is though it for sure, don’t get me wrong.  I will still rock on with my 3 steps forward, 1 step back attitude.  That least we are headed in only 1 direction, but I can’t control it.  I have to be here to day 100.  That’s 58 more days.

I just want to go home.

I am so proud.  This is a HUGE step.  EPIC.  I walked ALL the way from the front doors to the clinic totally unassisted.  I think that would maybe be the equivalent of half a city block, down an elevator, then half a block again?  It may seem minor, but 10 days ago I couldn’t walk to the bathroom.  When we came to the hospital, Shaye would have to run in, find a wheelchair, get me into it, leave me at the door, go park the car, and come back to wheel me wherever I needed to go.  Last week I needed the walker so I could stop and sit whenever I needed which was every few steps.  But today?  I feel sooo good about how I am progressing.  These baby steps are working their way to great things!  Today is day +31.  It’s a beautiful day.

Peace & Love

Trish xo

Do any of us really think we will be tested when we say those words?  Most of us are 20 somethings in the middle of a most euphoric day surrounded by everything beautiful.  As it should be.  I know I have always felt I could stand by Shaye’s side no matter what.  You can’t truly appreciate the difficulties surrounding these vows until you find yourself living it.

Shaye has blown me away with his commitment and dedication.  This is our 20th year of marriage, and he still surprises me.  He hasn’t complained, not even once.  6 years of my illness has taken its toll on all of us, and we have both felt like we were at the end of our ropes at times.  But it’s like he saw this transplant as a last hope and hit the situation head on, all guns firing.  That gave me the strength to do the same.  

Shaye takes notes every time the doctor enters the room.  He remembers things I’ve forgotten and asks questions.  He continues to make meals for me constantly searching for things I might eat, and never gets frustrated when I can’t, which is every time right now.  He plays guitar to help me relax.  He shops daily for the things we need.  He helps me with the humiliating things like bathing.  He gets up with me in the middle of the night when I’m hugging the toilet or laying on the bathroom floor, and always manages to peel me up and get me settled again.

At the age of 43, I am sure nobody expects their life to go off the rails, but it can. If it does, the bright side is that it shows you the strength in your partnership you may have forgotten.

For the record, Shaye and I were married in Mazatlan.  We have no idea what was said because the “judge” couldn’t speak a word of English, he could barely even say our names.

Peace & Love

Trish xo

Just another quick message.  I have officially been discharged.  I still have to go into the hospital clinic 3x a week to have my blood levels checked and meds adjusted.

I haven’t been updating because I have developed tremors, and I shake which makes texting and typing very difficult.  It’s make me feel a little more detached from everyone back home, but Shaye has been wonderful at handling messages and visits etc.  I still have a very weakened wee baby immune system, so we don’t have much visiting going on right now…another light to look forward to at the end of the tunnel.  

Energy wise, I have nothing.  No gas in the tank.   Yesterday I needed help to walk from the living room to the bedroom, and I would collapse when I got there.  Today I walked to the car from the hospital doors, and I walked to the condo from the car.  That’s progress.   I’ll take it!

I want you all to know I read every single message, they give me strength.    I am sorry I am not able to respond right now.  I hope the blog gives you a better understanding of this process, or helps in any other way.  That warms my heart.

Peace & Love

Trish xo

Hey all,

Shaye filling in for Trish. She asked me to provide a brief update. She’s out in her first post transplant pass today. Great news obviously. Things are coming along just as they should, we’re very encouraged by the progress. But it’s a long way from over. She has next to no energy. A walk down the hall is a draining ordeal. (Which is why I’m writing this.) Suffice to say, so far so good! 

Peace & Love

Sg