Tag Archives: PICC

Day +37

Happy weekend everyone! We had a good week around here. Momma is finished her second Springbok puzzle, hubs and I continue our cribbage “tournament” and I continue to feel a little restless.

Photo 2016-10-30, 1 29 22 PM.jpg

Mom’s impressive, SECOND since she arrived, puzzle

On Tuesday  I had my weekly check-in at Module L and as usual I had blood work done. I mentioned last post that they removed my PICC line, and it was so nice to feel free to bathe unencumbered.

I purposely say “was” because late Tuesday afternoon, we got a call back from a BMT nurse. Remember, no news is good news? Well, the news was that my Cytomegalovirus (CMV) test came back showing reactivation. What exactly is CMV? Well for the nerds out there a full explanation go here.

Now, the pertinent bits (thanks Wikipedia):   “[CMV] is a member of the viral family known as Herpesviridae…most healthy people who are infected by [CMV] after birth have no symptoms. Some develop a syndrome similar to [mono]…with prolonged fever, and mild hepatitis. A sore throat is common…Primary CMV infection in patients with weakened immune systems can lead to serious disease. However, a more common problem is reactivation of the latent virus.” *waves hand*

CMV reactivation is something that they’ve been watching for (unbeknownst to me), so when the CMV titre started to rise, they were on it. For me, this means Ganciclovir – an antiviral medication given through IV. The course of drugs is twice a day for two weeks, followed by once a day for four. That’s six weeks, if you’re counting.

Luckily, I can do this at home! I am hooked up to a pump that is set to deliver the medication every twelve hours. The pump and medicine lives in a fanny pack I can carry around (hello 1990!). Home care comes once a day to change the bag of medicine. My port is being used for access since I (zealously) gave up my PICC line. The only real inconvenient annoyance is that the port is on my upper chest and cannot be covered like a PICC line can to bathe. So it’s sponge baths for this kid for the next six weeks. Ugh.

Photo 2016-10-30, 5 28 12 PM.jpg

My appetite is better. I’m still taking anti-nausea meds, but I imagine we’ll be tapering them in the next week or two…I hope. Taking meds eight times a day is kind of intense!


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.


No news, is good news!

September 11th & 12th, 2016

Mom arrived around dinner time on the 11th, and at 8am the next morning, we were at the hospital waiting on my PICC line insertion. The nurses were (as usual) awesome, and by 11am, we were done and headed home. I spent the afternoon resting and had nothing really interesting to report, no news is good news.

photo-2016-09-12-10-33-44-am-1

Double lumen PICC line (The pink stuff is the disinfectant they used.)

September 13th & 14th, 2016 (Day -10 & -9)

From this point onwards, the doctors and nurses refer to the days leading up to the transplant (which is day 0) as (-) days, and the days after the transplant as (+) days.

Mom and I were at the hospital for 7:40am on the 13th. We headed to the BMT unit, and got settled for the day. The nurse drew my blood, and then we waited for the results before starting the chemo (Busulfan). Once we got the go ahead, they hung the chemo and started the IV Busulfan.  It is a 3 hour infusion, and both the doctor, and nutritionist came in to see me before noon.

Day -9

Day -9

The nutritionist is a lovely lady named Diane, and she was full of necessary (and helpful) information.  We went though the list of foods I am to avoid now that the chemo has started and I am becoming increasingly immunocompromised. These include: fresh berries (too many nooks and crannies), soft cheeses, raw nuts, cold cuts, raw or runny eggs, fast food (oh, the humanity!), etc…

She was also able to steer us towards the foods and nutritional supplements that will help support my energy needs, as the transplant progresses, and I deal with the potential side effects of the chemotherapy like nausea, vomiting, loss of appetite, and mouth sores. (Good times!)

I was done chemo by 2pm, and we started for home. I treated myself to a piece of congratulatory cherry cheesecake on the way…first day down, and I deserved it. :oP

The rest of the afternoon and evening, were uneventful, I am finding myself increasingly run down, but have been fortunate so far to avoid any nausea (woohoo!!)

The 14th passed as quickly as the day before, we were able to come in a little later (9am) to the hospital, which was nice. Following my blood draw, and the wait on the results, they stared the chemo infusion. The BMT pharmacist came in to explain my medicine schedule. It is is LONG(!), but more manageable, especially with the handy chart that was provided.

Again we were out by 2pm, and we made our way home. I napped for a good portion of the afternoon, really only rousing for dinner, and was in bed to sleep by 10pm.


A new year…

Happy September!  I love this time of year. The weather gets a little cooler (or it’s supposed to), school starts, and fall activities ramp up. While January is technically the beginning of the year, September will always be my unofficial new year.

So, it seems appropriate that I start the transplant in September.

2016 08 31 (5).JPG

See, there’s mom sitting next to me (on the phone). :o)

The hubbs and I had our transplant planning meeting with the BMT team, last Wednesday (August 31st). We were given a hard copy schedule of dates and milestones, exactly like the first time. Mom, opted to stay home and to join in by phone as we’re all going to be very cozy over the next few months as it is, and that worked great.

Beside the August 31st date, it said things like “planning appointment; transplant talk…transfusion medicine consent…” -intimidating even on paper. Again we spoke with one of the transplant nurses Shannon, and this time the medical director of the transplant program, Dr. Bredeson.  Now, I don’t know if it was just coincidental that he was doing the BMT clinic that day, or if every patient sees him before transplant but either way, the “transplant talk” came from him, and as such was made even more sobering when discussing things like side effects, and potential complications that included things like…death.

We’ve known the risks from the beginning, and we’ve accepted them as possibilities, AND we’ve been given this talk at least three times since the inception of the transplant discussion, but honest to goodness – can we just stop already? My peeps and I have all agreed that these are conversations that they ethically (and probably legally) have to have, but they’ve had them, and in the interest of acknowledging that we’re coming up to the scary bits of the process…let’s just not.

After Dr. B made me briefly doubt my decision left, Shannon came back into the room and we talked about how they were going to try to manage the nausea better this time, and confirmed that I would need a PICC line inserted. It seems my portacath would not provide enough access for everything that they would be pumping into me before the transplant.

A brief run down of the schedule: (I will explain the steps further as I move through them.)

I started Phenytoin yesterday (Sept 6th) for 7 days, because apparently seizures are a thing *blink blink* that can happen with the chemo.

September 10th or 11th – Mom arrives!!

September 12th I have the PICC line inserted.

START is September 13th (aka. Day -10) with 4 days of IV Busulfan in the day hospital, as an outpatient (yay!)

If all goes well,  I won’t be admitted until September 17th (Day -6), when I begin 5 days of cyclophosphamide (*hiss!*)

On September 19th (Day -4), they add rATG (rabbit derived antibodies…no, seriously) for 4 days….and….*drum roll*

On September 23rd (Day 0) I will have my CIDP free stem-cells returned to me!

This is the plan, and it will be awesome if it works out this way. If not we’ll deal, but in the meantime anyone with prayers and/or happy, encouraging thoughts to share, please include me in your practice, or as you move through your days in the coming weeks.

**A quick aside: during the next while, you might also hear from mom, who has offered to keep everyone updated if I am unable. We’ll do our best.