I spent Thursday and Friday of last week in Calgary for 2 gruelling days of teaching, and testing for the big day.  I think I am still feeling he “hang-over” effects of those days (and no, there was no alcohol involved)!  I am just totally drained.  The kind of tired when everything gets under my skin.  I have to count to at least 3 before responding to anything because otherwise I am likely to scream, or cry (and either response is like a roll of the dice because there really is no correlation between stimulus and the type of response it elicits from me).  It is an effort to lift my arms the evening.  I dread having to get up to take my meds, get a glass of water…everything really.

Ok, enough complaining, I just needed that little vent…

Here is an actual update from last week’s appointments:

DAY 1:

Dietician Consult

It started out kind of exciting.  High protein, high calorie diet.  She said I will be burning calories just growing stem cells.  So even when I’m sleeping, I need extra calories.  The thought that I can work out by sleeping is music to my ears, then the music turns to finger nails on a chalkboard in an instant!  I am told that I basically have to treat Canada like normal people treat eating in a third world country.  Absolutely NO fruits or vegetables when eating out, or ANY uncooked made-to-order food post transplant.  NO STARBUCKS (insert temper tantrum).  NO Slurpees, no Timmies, no summer blizzards…NOTHING from a machine.  Why??? WHY??  Because the machines are not cleaned regularly enough to eliminate the kinds of bacteria that could make me really sick and complicate the transplant.  Normally, our bodies can handle that bacteria (sorry if I ruined your morning coffee, place feel free to disregard what I am saying and pretend you didn’t hear anything of the sort, I would!). it gets even more complicated.  All fruits and veggies I do eat at home have to be fully washed, so no previously frozen bagged fruit or spinach for my smoothies.  I have some prep work ahead of me.  No dried fruit, no nuts (unless roasted), no probiotics, the list goes on.  I am going off memory here because one of my BFF’s stole my list to photocopy so she can help prepare things.  I am so blessed.

I chose the vegetarian diet on the ward because they recommended it over the fully-cooked, ruined icky meat diet.  That’s the next item on the list.  No more medium rare steak.  Immediately, this comes to mind…

It’s ok, it really is.  I have been on and off meat for years now, looks like a great time to be vegetarian again.  I’m going to think happy thoughts, and envision myself becoming this guy…

RN Teaching Appointment

The appointment started out with laughs because as soon as we sat down, Julie (a BFF) says “before we get started, I have to ask, CAN THIS KILL HER??”  And she throws her hand in the face of the nurse (it has a hard spot on it she thought at one time may have been a wart, but clearly isn’t)  I kid you not, we all laughed so hard.

I cried a little when it hit me that it would be 3 months before I see the little people in my life.  They bring me so much happiness, and they make me smile on my worst days.  My kids are clear, but they explained nobody under the age of 10 should even be staying at the apartment.  I have allays loved summertime because everyone is off school, and I can catch up with all of the nieces and nephews.  I guess there is always FaceTime (my 20month old niece randomly face times me all the time on her own), it’s just not the same as “AUNTIE TRISH!!” followed by a ginormous hug.

My nurse talked a little about when I will feel the worst, and what the different Chemotherapies will do, but said I would go into more depth when I met with the pharmacist.

We discussed my “radiation day” (2 rounds of Total Body Irradiation in one day).  It sounds pretty cool.  Apparently I am totally surrounded by a gel, only my face is exposed.  We thought Ayden might like to help lock his mom in a case of gel (he wants to take a medical camp this summer, and watches all of my upcoming procedures on YouTube).  They are going to look into having him help.  I am going to look into the anti anxiety meds they offered.

Physical, History & Bone Marrow Biopsy

This was the funniest of all appointments.  I usually have dates, meds, side effects, treatments, biopsies etc stored in my mind (and there have been TONS of them).  Thank goodness I had Christi and Julie there, because they acted as my brain for this one.  They were not bad as stand-ins either.  Julie has been a sidekick and partner in crime since I was 6, so she answered the early year questions, and Christi filled in the family history stuff.  I was a disaster, my mind totally discombobulated.  I think it was the impending Bone Marrow Biopsy weighing on my brain.

Originally Dr Chaudhry was scheduled to do the History/Physical, and another Doctor for the biopsy.  Shortly after our long appointment with Dr Chaudhry, the lab person and my nurse advised us that we were super lucky to have Dr Chaudhry doing the biopsy too, and he “rarely ever does those anymore”.  I’m not sure if he requested it because we were so crazy, or if the other doctor requested NOT to do to because we were leaving a mark everywhere we went.  The laughs didn’t stop there.  He started giving me the drugs I requested and asked me to start counting backwards from 100. First, I apologized for anything stupid I might say, and I began. I graduated to counting by 3’s backwards from 100 because I was too fast (yup, I was impressive).  I think the 3’s were too challenging because he dropped me to 2’s and they started laughing at me.  Ok, so I made a few mistakes.  We all make mistakes right?  Then, he ordered Julie to the floor, and Christi quickly shuffled out of the way and took my hand next to the bed.  Then we had ANOTHER medical person join us in our closet sized biopsy room.  Now we had Dr. Chaudhry, myself, Christi, Julie, My nurse, The Lab/Sample taker…and now…JULIE’S personal nurse.  Julie needed her own medical team apparently because she was on the floor and not looking good.

Dr Chaudhry asked at one point, “How are you doing”.  I responded with “Uh, pretty good considering the needle in my back”  He said “not you, your friend”.  NICE.

Still smiling though, and even through the pain, my sidekicks kept me laughing.  I think I need them more than the drugs next time, I love them.

This was my last appointment of the day.  As we were leaving, Christi received a call from HER donor nurse (who she hadn’t told she would be at the Hospital that day) saying  “I heard you were here today.”  Hmmm, I wonder why? 😉

DAY 2

PHARMACY TEACHING

EEK.  This was the overwhelming part.  Day -7 (June 18) I get a central line put in and they do testing with Busulfan (one of the chemos to determine dosing stating on the 20th).

Day -7 (Friday June 19) Rest Day

Day -6 (Saturday June 20th) Start 2 Chemos (Busulfan and Fludarabine)

Day -5 (Sunday June 21) Start 2 Chemos, Christi starts injections to stimulate Stem cells

Day -4 (Monday June 22) 2 Chemos, Christi gets injection

Day -3 (Tuesday June 23) 2 Chemos, Christi gets injection

Day -2 (Wednesday June 24) Anti-Thymocyte Globulin (comes from a bunny, controls Graft Vs Host disease ), Christi gets injection

Day -1 (Thursday June 25) Total Body Radiation (x2), Anti-Thymocyte Globulin,  Stem Cells harvested from Christi

Day 0 TRANSPLANT DAY (quite anti-climactic really, they hang a small bag and let it go in.  I just get to watch and pray those little cells are strong, and my body accepts them.

The other list of meds is long, and crazy, and boring, so I won’t list them.

Research Appointment

Christi and I offered to be part of a study to help doctors learn more about the transplant process and how to keep it one of the best in the world.  Blood tests and a few pokes are a small price to pay when we are talking about bettering a treatment that saves lives.

I feel so blessed to have had Christi, Julie, and Shaye by my side for these appointments.  I had a pep talks with Debbie and Barb the night after biopsy too, and so many messages and comments on Facebook.  Thank you EVERYONE, your positive energy keeps me strong, keep it coming.

Love T xo