Tag Archives: Busulfan

Sometimes you’re the windshield…

Hello again all! It’s Jess, back in front of the keyboard. Momma did so well with her updates, I’m grateful that she helped document the process. I’m not sure what good drugs I was on I was thinking that I was going to be able to do it, I just had no energy to update you properly myself.

Last she posted, I was out of the hospital for the second time, and going to the BMT clinic on Oct 5th.

October 6th, 2016 (Day +13) to October 16, 2016 (Day +23)

A belated happy thanksgiving to you all!  I have so much to be thankful for, not least of which are all the wonderful, thoughtful people in my life. This experience has been made tolerable by the lovely surprises and great support I have received in recent days. Thank you. Thank you. Thank you.

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Me and sis. You may notice that my right eye looks weird, I burst a blood vessel, adding to the overall loveliness I got going on right now. *wink*

Both Daddio, and the Sister were in town for thanksgiving and it was awesome to see them. Daddio even came to the BMT clinic one day so that he could see where I was spending so.much.time.

Fall is in full swing, and we’ve had some beautiful autumn days. Momma has done her best to encourage me to get some fresh air every day, and I’ve even been out for a couple of short strolls.

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Mom and I took a short stroll at Hog’s Back park.

Over the last 10 days, my time has been spent between home and the BMT clinic. I’m pleased to say that I haven’t had another admission to hospital since our last post.

As you may recall, I started out by having an appointment every day at the BMT clinic (day hospital), then it became every other day.  On October 9th, I was officially “discharged” from the hospital. This means that, I will no longer have appointments on 5 West, as part of the day hospital, and if I need to be readmitted I have to go through the emergency department like everyone else – they are no longer holding a bed for me.  It also means I will start to be seen once a week in the BMT clinic in Module L, at the hospital. (Much more like a doctor’s office than a hospital room.)

On October 11th, I had my first “post-transplant” appointment in Module L. Nothing significant to report. They do blood work at these clinics but we don’t have to wait around for the results anymore, and we were told that they would call if there was something urgent. So, no news, is good news.

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A work of art by mom. So.many.pills.

The song lyrics for how I’ve been feeling these last 10 days are: “Sometimes you’re the windshield, sometimes you’re the bug.” I have good days, and bad. Some days I have energy, some days I sleep most of the day.  I’ve been struggling with nausea, but the doctor changed my anti-emetics from “as needed”to several times a day.  It seems that that has taken the edge off of the nausea. The doctors assure us that all of this is normal.

Another common side effect – poor appetite. Although I’m not nauseous, my appetite is pretty much nonexistent. I’m mostly eating soup, jello, toast, and crackers and cheese. Everything tastes strange, and NOT in a good way. I wouldn’t call it metallic so much as bitter.

One other side effect that I’ll mention that’s popped up, is hyper-pigmentation. Busulfan causes this, and it’s under my arms, and in the creases where my body meets my legs. We were told it would happen, and that it would resolve itself.


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!

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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.

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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…

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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…

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STOP
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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)


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.

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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.

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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.

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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.