So Day two was a lot less activity. Which was a little bit of a let down because the husband and me are so active (not…)

Anyways

Just two things all day. The Vein check was just a tour of the facility where I would have the stem cell harvest, because one look at my arm and the nurse said (and I quote) “you will need a temp catheter placed in your jugular. your veins are too small” I could have told her that over the phone. But she wanted to see me. Makes me feel important.

Then we met with Dr. Burt and only discussed possible risks of doing the stem cell. Stuff like “You might die”. Nothing too concerning  🙂

Oh and there was a math test. Where you add the last two numbers in a series thrown at you by an audio CD. The numbers were all 1-9 so you’d think it was easy. That’s what I thought too. I aced the practice test. But the real tests were a lot more challenging than I imagined. Imagine this series : 1,5,9,4. The numbers are read out at 3 second intervals. I have to keep saying the answers: 6(1+5), 14(5+9), 13(9+4). Easy enough right?

Except my answers were : 6(1+5), 15(6+9), 19(15+4), uh what?

Yes it is hard to not remember the last sum you cleverly totaled but only remember what the CD said last. But this was my baseline test. So no Pass/Fail. Small satisfactions.

That was it for the day. Now I have a 5 day break to stress about the needle to be put in the jugular next week. And I am good at stressing. I’ll surely ace that.

 

So the testing has begun!

So many tests … so much to remember… But I have a hold on it ! I have to. I have dreamt about this day for so long. I am ready.

The nice docs want to establish a baseline for a lot of my scores pre-HSCT.

I started out with visiting the pulmonary function test facility. That means that they check for proper lung function. I had to blow into a tube and the machine that is hooked up to the tube plots my lung function on a graph which I couldn’t read. I thought the blue lines looked nice, BUT apparently my efforts sucked (metaphorically, not literally)

A thought for later: Do some Yoga and Pranayama regularly

Up next was a 1 hour session of 2D Echo – to see functioning of my heart. The lab tech very kindly threw in a free check of how efficient the pumping was and said “This is the only thing you will get for FREE in Chicago”. He was right. This city is insanely expensive.

In the excitement of starting testing, we got no time for breakfast. Me and my husband are vegan. I cannot walk far and by that I mean I can walk maybe 100 feet. This limited our food options to the small cafe in the hospital building (Arkes Pavilion – Corner Bakery). And the only vegan option there was coffee with no milk. So…we had scrambled eggs 🙂 yes Vegan lifestyle went down the drain.

Back to testing… First was a blood draw. They must really like blood here. They drew 18 tubes of blood. Yes you read that right. 18. Small price to pay I suppose.

Followed up by an EKG and chest X-ray, both of which took 1 minute each. But I spent a good 10 minutes dressing in the appropriate gowns before each test. Why they couldn’t do it all at once? I do not know. I think this is called ‘Job-security’. But we shall not complain. we shall not complain.

More tests to come tomorrow and the all important doctor’s appointment with Dr. Burt.

 

My treatment dates are final ! The treatment is split in two parts – once in October and once in December 2018. This is because the doctor is out of the country in November. I am so excited for this next phase of life that I can hardly wait for it to start.

Tuesday, October 9, 2018

Labs Drawn

Chest X-Ray/EKG (Please be sure to CHEST X-RAY and EKG performed!)

Pulmonary Function Test – I guess I have to breathe into a tube to check my lung capacity

2D Echo

Wednesday, October 10, 2018

Vein Check – No clue what this will entail

Meet with Dr. Richard Burt

(I first heard about the doctor on BBC. Usually I think of people on TV as living in another universe and generally out of reach. But I met this doctor, and got accepted into his clinical trial. I still cannot believe that this happened, so I have a justified fan girl fascination in meeting him again 😛 Surely any MS patient shares my feelings)

EDSS test 2:30 p.m. by one of Dr. Burt’s nurses, please check in at 14^th floor- Galter Pavilion Medical Specialties

Tuesday, October 16, 2018

Mobilization !! – This is the step where I get to enjoy some daily injections for 10 days which are supposed to entice the stem cells to enter the blood stream from the bone marrow. I can handle 10 more needles in life 🙂

Friday, October 26, 2018

Temp Cath Placement 

This is the line placed into a vein in my neck to collect stem cells. I am OK with needles BUT the idea of a needle in my neck is giving me nightmares aaaahhhh. But this too shall pass I suppose.

HARVEST of Stem Cells !

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END OF 1st SECTION OF TREATMENT

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Thursday, December 6, 2018

Triple Lumen PICC Placement

Friday, December 7, 2018

Admit to hospital

Days -5 to -1 – Chemotherapy days. Wiping out the immune system to create way for stem cells and then a brand new immune system

Day 0: DEC 12 2018 – STEM CELL TRANSPLANT DAY (STEM CELL BIRTHDAY)

Day +1 to +8 – Neutropenia 

Neutropenia is when the White Blood Cells count is still too low and I am being monitored continuously for potential infections. Much like a newborn infant.

Day +8 – Day +10 – Potential discharge based on my WBC count. I believe this will be checked everyday and once I am deemed fit to enter the world again I will be let go and I get to fly coach back home.

 

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton