Tag Archives: nausea

Day +70

Well hello December!  Twenty-two shopping days until Christmas, and I can proudly say that I’m almost done mine.  Luckily, online shopping has made it so that I didn’t even have to step into a busy, germ filled store, but could sit quietly with a cup of tea browsing for gifts.

On the health front, things are good.  My follow-ups are now every two weeks, instead of weekly and I FINALLY finish the Ganciclovir next Wednesday.

I’m STILL struggling with nausea, and can’t seem to eliminate the olanzapine from my list of daily meds. The BMT team assures us that this is not that strange, and they also continue to remind us that everyone is different.

In happy news, my HAIR has started to GROW!! ….I mean…it’s really no big deal *wink* they’re fine little wispy hairs, but they’re definitely growing. My finger nails however, have started to peel. Yep, that’s as gross as it sounds, and it’s also pretty painful. Again, BMT docs say that it’s not unusual and not to worry, but it’s making day to day tasks like getting dressed, painful.

I don’t think that I mentioned it at the time, but the bottom of both of my feet also started to peel earlier in my recovery, and my lips are perpetually dry and peeling no matter the water I drink or the lip balm I apply. I joke that it’s like everything is trying to jump off of my body. My hair, my skin, and now my nails. It affirms just how toxic chemotherapy is to all of the body’s systems. A necessary evil of sorts, I know.

Our house is on it’s way to christmafied. The tree is up and lit waiting for the ornaments that we’ll hang this weekend, and thanks to momma we’ve enjoyed our first little sweets from our advent calendars that she never fails to supply. You’re never too old for chocolate in the morning!


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)


But we’ll get it out of the way early, she said

Thursday, August 11th & Friday, August 12th

Thursday passed much like the past couple of days.  Nothing to report, except maybe that I felt really good after dinner, and mom and I went to BOTH Second Cup AND Starbucks for an after dinner treat. Why?  Because I could.

Those that know mom will appreciate that this was a big deal.  My mom has never appreciated understood $5 coffee.  Fair enough, it is a little insane and like most responsible adults, *spits* wasting money on “fast food” has always been discouraged.

But Thursday night, she was all game.

And like any mature child person, I decided on the swimming pool size Venti Mocha, a square, AND a cookie. *shakes head*

Uncomfortably stuffed Satisfied, I headed to bed but tossed and turned until midnight.  In my infinite wisdom, my brain decided that then was the perfect time to seriously worry about the nausea to come with the transplant. *wide eyes*

I soothed myself by scouring ‘the Google’, and learning that something called Sea Bands has had some success and works using acupressure points.  I also read up on scopolamine patches, which others have said help too. You name it, I’ll try it!

Satisfied with more info, I slept restlessly most of the night.

Friday morning was my “put our eyes on you” appointment at the hospital at 8:15am. The BMT team says that they just like to physically see people’s faces before the weekend. There are obviously doctors on call all weekend, but I sense that it’s (much) more of a production if you have to come in on the weekend. Easier to hang some fluids on Friday in the clinic, than admit someone for the same thing on the weekend.

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My mama.

I NEVER would have scheduled an appointment at 8:15 in the morning, but we were gung-ho I guess when mom made the appointment a few weeks back (no sass). I get that when feeling well, you think “hey, I’ll get it out of the way early and then have the whole day to do other things.” My stomach never does really well in the morning, and suggesting that it be up, dressed, and human by then proved to be a strategic error. More than a little green, we made it to the hospital with time to spare.

I’m learning, that two things are unwise:

  1. an empty stomach
  2. a full stomach

Going forward I’ll be sure to have some crackers or a granola bar with me wherever I go. For today, mom ran to Second Cup and acquired a blueberry scone.  A couple of mouthfuls of that and I was feeling WAY better.

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Waiting for bloodwork.

We saw Erin, a nurse practitioner with the BMT team, and had my vitals taken. Still alive. :o) They also took some blood, to see where my counts were.

We discussed the nausea and my meds, and were reminded that this weekend I would probably be neutropenic. So no crowds, kids, or anyone sick.  She also emphasized the importance of calling if I got a fever. A fever for our purposes is anything over 37.5 degrees Celsius. I have to take my temperature four times a day – so I guess it’s kind of important. *smirk*

We got home around 10am, did my neupogen shot, and then I slept until 2pm. So.much.sleep. Even for me.

When I woke it was raining (hallelujah). We needed it desperately.  Mom and I then watched Rosie MacLennan win gold for Canada in trampoline!  It’s interesting (if maybe a little self involved) to see these athletes at the pinnacle of physical performance while I’m feeling so unwell. I really do love to see them so happy, excited, and energetic. It reminds me how amazing the human body is – the negative, and the positive.

The hubs went to fetch dinner (we really have eaten in/well every other day this week…no really!) and I enjoyed half of my supper (small, frequent meals – also better for the tummy).

I spent the rest of the evening catching up with my PVR, and was in bed before 10pm.

Happy weekend!

 

 

 


Relief…

Sunday, August 7th

My new morning nurse was awesome. She spoke to someone before she even came into the room for the first time, and was trying to get an order for olanzapine. She came in and said she would hang some more Maxeran in the meantime and about 20 min later, she came back and hung the wonder drug olanzapine. Originally, prescribed as an anti-psychotic, olanzapine has been successful at treating chemo related nausea and vomiting when other options fail. Thank God! Within about a half hour I felt significantly better and was able to sleep finally. And sleep I did! The hubs relieved my mom at about 11am. She went home to sleep, and my wonderful husband pretty much just watched me sleep until 7pm. There whenever I got up groggily to use the washroom, or just opened my eyes to see the time. He was awesome.

Jess with pillow day 1

We’re still smiling-ish..

The doctor came in to see me in the afternoon, but to be honest I don’t remember much about it except that I had to get up to use the washroom while he was there.   It was obvious I wasn’t going home, but that was fine with me. I had sleeping to do! The hubs was replaced by my mom for the night, and I just kept right on sleeping. #sleepviking


On your mark…

Saturday, August 6th, 2016
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*A little blurry* Our arrival at the hospital.

We arrived at the hospital shortly before 11 am. We left admitting and made our way to the BMT unit.  I got settled (my room was quite bright and the bathroom was quite close – which was handy as they reminded me that I was expected to pee every hour for the 24 hours following the chemo) and had my blood drawn.

After the results of the blood tests came back, it was time to get the show on the road. The hubs stayed with me, while my mom headed home to rest and do her thing. She was the lucky one doing the night shift.

Jamey and Jess at hospital

About to get the party started.

The nurse gave me all of my premeds (to prevent nausea, and protect my kidneys) and the chemo got started around 2 pm.  The nurse warned me that my head might start to feel congested (boy was she right), and around an hour in, they gave me a dose of Benadryl to help with that. It felt just like a head cold, complete with sneezing and sinus pressure. Luckily the Benadryl did the trick.

Everything was pretty uneventful for the afternoon, and the hubs and my mom spelled each other off around 7pm.

 

The nausea started around 9pm, and didn’t let up until the next morning. I (We) dozed in 10 min intervals, maybe, but was (were) up most of the night. They tried EVERYTHING. Zofran, Decadron, Maxeran, Stemetil, and finally Gravol towards the morning. We got so desperate, we tried acupressure on my wrists even. Nadda. The nurses who by now I’m sure wanted to shove the call bell down my throat didn’t know what else to offer.

Luckily, when my morning nurse came in, she had a plan.

 


The countdown…

Friday, August 5th, 2016
green clock

Clock 2. FreeImages.com/Ammar Abd

Mom arrived tonight, driving after work in anticipation of the start of my first round of chemotherapy tomorrow.  I have to be at the hospital tomorrow morning for 11am.  I will be admitted, and then the fun officially begins.  The plan is to do one overnight in the hospital after chemo, and then home to rest and start the neupogen shots on Monday.

This seems like an appropriate time to discuss the whole crazy process that is about to start, and to answer questions like “what is neupogen?”

What is a hematopoietic stem-cell transplant (HSCT)?

Often times when someone says “stem-cells” people automatically think of cancer, and/or cell regeneration like the kind being studied for use in spinal cord injuries, and sometimes crazy science fiction experiments.

This is not the case in my situation. The goal of my stem-cell transplant process is to use very strong chemotherapy to kill the parts of my immune system that hold the ‘memory’ used to attack the myelin sheath around my nerves.  By erasing this immune memory, the hope is that the auto-immune disease process will be halted.

Once my immune system is suppressed with the chemo, I will get a transfusion of my own stem-cells, helping the immune system to heal.  These stem-cells will be collected prior to the depletion of my immune system, and stored until I’m ready to have them re-infused.  Hence, the name “hematopoietic stem-cell transplantation” meaning “receiving a transplant of your own stem-cells.”

Does this have anything in common with the same treatment used for cancer?

The HSCT process is based on the procedure used to treat various forms of cancer. In the treatment of cancer, the goal is to kill the ENTIRE immune system including the bone marrow, where immune cells are produced. To this end, radiation AND chemotherapy are often used and patients often require a bone marrow transplant from a donor to survive.

The protocol used to treat CIDP varies in the level of toxicity. Some programs/institutions protocols’ target only the immune memory (sometimes called stem-cell transplant light) while the protocol used here in Ottawa is more thorough and toxic, in an attempt to not leave enough immune memory to replicate the disease after transplant but not so much as to kill the bone marrow.

What is the process?

At this junction, I will only try to explain the collection process part of the transplant procedure.

The first phase of the collection process will be one dose of chemotherapy called cyclophosphamide.  I will experience many of the traditional side effects of chemotherapy, including hair loss. My blood counts will fall, and I will have to watch for signs of infection like fever, pain, and/or nausea. I will have to stay away from crowds, and definitely away from anyone who is already ill. This fall in my blood count will help to springboard the growth of stem-cells for the next part.

syringe and vial

Syringes and vial. FreeImages.com/Brian Hoskins

After the chemo, I will receive 10 days of subcutaneous neupogen injections at home (thanks for doing that mom!). The neupogen will stimulate the growth of the stem-cells found in my bone marrow, and cause them to push out into my peripheral blood.  After this happens, these stem-cells will be collected in a way very similar to dialysis. I will be hooked up to a machine that draws the blood out of one arm, runs it through a machine to separate out the stem-cells, and then re-infuses it back into my body.