Tag Archives: #sleepviking

Day +30 (1 month)

It’s been one month since day zero, ONE MONTH since I got my stem cells back. I can’t even believe it!

It’s been an uneventful couple of weeks here. Like I mentioned in my previous post, I have good days and bad days.

In general, my energy level is better than prior to transplant. I’m not waking up every morning already planning how to get back to bed, and sleep. Rest assured however, I am still a #sleepviking, and taking “healthy” naps…especially on bad days.

Not much else feels different so far. I’m still pretty unsteady when I stand or walk, and keyboarding is still proving to be more challenging than a few months ago. I write this with an awareness of what the doctor’s said all the way through. The goal wasn’t to get more function, that will be a plus, the goal was to stop further loss of function.

photo-2016-10-18-12-21-17-pm

Module L , waiting to have my PICC line removed

Some of the highlights from this week included: our weekly check-in at Module L (went fine, AND they took out my PICC line!), and a trip to a matinée of Bridget Jones’ Baby. It was cute, and mom enjoyed it too. We took a lovely drive to see the fall colours in the Gatineau Park, and we made it up to the Champlain lookout. What a view!

Photo 2016-10-17, 12 42 55 PM.jpg

Me and mom at Champlain look out.

I’m feeling a little bit of cabin fever. We’ve gotten a bit of conflicting info about whether or not I am “cleared” to leave the house. Some of the BMT nurses say no, while some say that going out is ok as long I stay out of crowds.  Unfortunately, the puzzles I took out for the puzzle addict mom have pieces that are too small for me to manipulate. She just bought one with larger pieces, we’ll see how that works.

The hubs has also reintroduced me to cribbage, and so we have a bit of a contest on, loser (the hubs), owes the winner (me) a coffee. *wink*

My appetite, has been up and down. I’m still taking all the anti-nausea meds (olanzapine, Zofran, Maxeran, Nabilone) and they’re still doing their job. *thumbs up*

Now a final note…on hypochondria. Ha! How’s that for a closer! I joke, but it’s real.  I am surprised (a little) to find out how hyperaware I am of EVERYTHING. The food I’m eating, the people I’m near, the doorknob I’m turning, or the handrail that I’m using. With their germs everywhere…forever unclean… I’m really having trouble not turning into a germaphobe who panics at the occasional sneeze, but I’m doing my best.  They keep comparing my fragile immune system with that of a baby’s, and I’m telling myself babies are resilient…hey, it’s how I get through.

Advertisements

Take the drugs!

September 15th & 16th, 2016 (Day -8 & -7)

Both days started with mom and I arriving at the hospital and being on the 5 West BMT unit for 8:00 am. It took the nurses (…still awesome) about two hours to set me up and start the Busulfan flowing. The delay is because they do a vitals check, blood draw and then wait for the results, before they can order the chemo to the floor and get started for the day.

The infusion was wonderfully uneventful and I slept much of the time. We left for home again around 2pm and I headed straight to bed, getting up only for a bit of supper.

 You know, I thought I was extremely fatigued from the CIDP(!); unbeknownst to me, there was a whole underground garage of fatigue I had not yet accessed before now. Luckily I’m able to sleep well (#sleepviking), and besides a general malaise, I felt okay. No nausea or vomiting! (knock wood)

Feeling a little bit of cabin fever, mom went out to pick up some prescriptions on Friday evening, and while she was out, a beautiful surprise arrived at my door to visit! My sister, all the way from Sudbury for the weekend! #score #sisterlove

 September 17th & 18th, 2016 (Day -6 & -5)

Saturday, the 17th, was a rest day so we didn’t have to go in to the hospital at all. (Woohoo!) I got up to take my morning pills and was treated to some vegan pancakes made with love, for breakfast by Sis. Yummy!  Pouring rain made it a dark and dismal day but it was nice nonetheless to have so many of my peeps close. All that were missing, were Daddio and the (sister’s) fiancé.

After breakfast, the hubs and I went out to do an errand and pick up some groceries while mom and sis went to a bridal sale event. We reconvened in the afternoon and Sis and I watched the Sex and the City movie (because, why not?!)

Sis made a lovely Spaghetti squash recipe for supper, then I was back upstairs to rest and pack for the hospital the next day.

We were up bright and early again and on our way to the hospital for 8am, the next morning. Mom and I went ahead and Sis stuck around waiting for CAA to come free her keys from her locked car. (Hihi) She caught up with us about an hour later and brought tasty hot chocolate to get the party started!

img_4462

The three musketeers waiting to get started.

We waited quite a bit for everything to start  moving, but finally got hooked up for the cyclophosphamide around 11am.

 Running alongside the cyclo was a drug called Mesna, that is used to protect the bladder, as well as regular old saline.

IMG_4460.JPG

So.many.lines.

Now, I place a caveat here because this is where it gets a little bit more graphic. Think of it like a spoiler alert. So if you’re squeamish to know too much about me, scroll on down until you see STOP…

1

2

3

SCROLL…

In the interest of providing details for anybody who might have this procedure in the future, and who happen upon my blog for information, cyclophosphamide at the doses that I am receiving can cause all sorts of bad things. In previous posts I mention things like premeds to protect my kidneys and to prevent nausea.  We all know how well that worked out.

During and after the cyclophosphamide is administered, the doctors and nurses have to make sure that the harsh chemicals are flushed out of my system as quickly as possible after they do their thing. There are two ways of doing this: making sure that I get up to pee every hour during and for 24 hours after the cyclophosphamide infusion ends, OR have something called a Foley catheter inserted into my bladder, so that I don’t have to get up at all!  The first time around for the one cycle of cyclophosphamide I chose the get up and pee route.  In the words of Julia Roberts in Pretty Woman: Big mistake. Big. Huge. Between the nausea and vomiting and the already unsteadiness on my feet, the situation was neither pleasant or ideal, so this time learning from my mistakes, I agreed to being hooked up, and FYI: best decision ever…

.
.
.
STOP
.
.
.

This time around, we were better prepared for the nausea. Equipped with my SeaBand acupressure bands, ginger gum, and my anti-emetic friends olanzapine, Maxeran and Emend, I felt pretty okay until around 3pm. The nausea started then, but without the ferocity I had felt before. I was quicker to ask for something else for it, and managed to not actually be sick.  The nurse (…still awesome) was quick with some Zofran, and a couple of hours later, I was back to feeling like the nausea was under control. I even managed some dinner!

Another thing I’m learning through this process: take the anti nausea meds(!) Take them the minute you think, you think you might be nauseous. With these chemotherapies, don’t be a hero. The nausea is like a speeding train.  The more momentum it gets, the harder it is to slow down and keep on the track! With that said, I’m grateful that we got the train stopped. One day at a time.

To round out the evening, mom stayed with me through the night, but luckily didn’t have much to do…It was a good day :o)