Tag Archives: chemotherapy

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!


Update…update…update…

Hi all,

This is Judy again. It’s been a challenging few days over here, but we want to make sure to keep everyone apprised of our comings and goings.

You can see the schedule of Jessie’ chemo days in the pic below. A nomenclature to highlight here:

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Rabbit anti-thyomyocyte globulin (rATG)  references an antibody derived from antibodies that do indeed come from…rabbits. It’s used against human T cells (another part of the SCT we want depleted for transplantation).

Here we go:

September 19th TO the 21st, 2016 (Day -4, -3 & -2) 

Thank God for the catheter is all I’m gonna say; it was heaven sent – although the collection bag had a cytotoxic skull and crossbones sticker on/ it. I guess that’s why they pay the RNs the big bucks.

 

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Hmmmmm …

While I suspect that the combination of anti-nausea drugs (olanzapine, Maxeran, Emend, and Zofran) have built up to make Jessie drowsy and lethargic, she didn’t sleep well during these days/nights. Between having vitals taken, pumps alarming, pressing the call bell for more anti-nausea meds, and then breathing deep until those kicked in, there wasn’t much quiet time. She was able to sit up in a chair, have a shower, and go for a few walks, but was still uncomfortable longing for her own bed. Her vitals stayed normal during all of this time. Yay!

As a nice surprise on Wednesday,  we got news that if all goes well during the transplant infusions and Jessie is feeling good, she can GO HOME after receiving her stem cells on Friday – travelling to and from the hospital on a daily basis to monitor  vitals, blood work, and medication, but spending the evening and night IN HER OWN BED!

September 22nd, 2016 (Day -1)

This was a rest day. Jess received one unit of blood. 

September 23rd, 2016 (Day 0!!!) “New birthday!”

Jess’ WBC is <0.1.

Four bags of her CD34 enriched (CIDP-free) stem cells were infused back to her over the course of about an hour. Each bag was thawed just prior to being hung and her vitals were done before and after each bag. This was a very big hour in our lives and one we have waited and hoped for for a long time. 

Soon after the infusion Jess started with some stomach pain. This and heartburn would get progressively worse as the afternoon and evening wore on. 

By 5:30 pm-ish we were on our way home! They warned us that the preservative that the stem cells were in could cause her to smell like cream corn because it is excreted through the lungs. And, DID she smell like cream corn … windows down in the car on the way home … cream corn smell.

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One of Jess’ four bags of stem cells (thawed and ready to transplant) 🙂

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Jocelyn, a GREAT nurse and teacher. She’s as excited about Jess getting her stem cells back as we are … almost …

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Getting “sprung” after receiving her stem cells.

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“Happy NEW birthday to you, happy NEW birthday to you. Happy NEW birthday dear Jessie, happy NEW birthday to you!”

September 24th, 2016 (Day +1)

Jess says it is good to be home and be in her own bed. She is taking sufficient meds to keep nausea at bay however since last night already mucositis is making her stomach sore constantly and her throat and upper GI painful upon swallowing anything including water. For this she is taking maalox, sulcrate, and dilaudid (2 mg every 2 hrs). So it’s been a cycle of take meds, sleep, and try to eat and drink, and repeat. 

This afternoon at her hospital check in the dilaudid was increased to 3 mg/2 hrs.

September 25th, 2016 (Day +2) “I can feel my heartbeat in my face”

Jess is having breakthrough stomach pain. So while 3 mg dilaudid/2 hrs takes the pain away it makes her sleepy and after 1.5 hrs she is needing something more for pain. 

This afternoon at the hospital check Jess was given subQ dilaudid and it worked like a charm except all she wanted to do was sleep … but sleep pain free, I might add. She managed to get in about half a cup of chicken soup during this time…in her stupor.

12 mg 2x/day of slow release dilaudid to start at 8 pm tonight was added to her medication buffet.

Food yesterday and today has consisted of very small amounts of soup, yogurt, scrambled egg, warm rice cereal, Ensure, and ice cream.

We were already told to watch her respiration on the 3 mg of dilaudid so that when the slow release was 12 mg, oh my! I get the whole s-l-o-w release thing but fifteen minutes after taking it she was totally pain free BUT she could feel her heartbeat in her face and ears. We couldn’t get an accurate read on the home BP monitor. A call to the on-call hematologist was in order or else hubs or I were staying up all night to watch her breathe. We were assured this was not unexpected and what we had to watch was her breathing … or lack thereof… What? Me wax dramatic? No way 😉

September 26th, 2016 (Day +3)

Last night was virtually a no sleep night. We are approaching 72 hours that Jess hadn’t slept more than 90 minutes at a time. We were happy that our hospital check was at 10 am today because we need a longer acting pain solution so that she can take in more calories and hydration.

Jess’ WBC today was 0.02 and her phosphate was low. So today she got IV hydration, IV phosphate, and three doses of diluadid subQ (including one for the road as we were leaving). They changed a few of her meds to liquid form to make them easier to take and, since the slow release dilaudid was ineffective, applied a fentanyal patch.

We were told that the mucositis will begin to resolve once the new stem cells begin to graft.

We watched some of the Clinton/Trump debate and she managed to get down a cup of Ensure enriched hot chocolate and a scrambled egg w cheese. Here’s hoping tonight is a better sleep.

The SCT day program at Ottawa General Hospital runs like a finely oiled machine. It is very impressive. Interestingly, all of the hands on care is provided by RNs (sometimes with student nurses in training); there are no RPNs or PSWs. The nurses are knowledgeable, wise, and caring. The program has a dedicated doctor, dietician, and pharmacist on the floor and they see Jess each day.

Bedtime  …and we hope she gets more rest.


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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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.


Hair today, gone tomorrow

Did you know that with this protocol of SCT that the first round of chemo is over…like a week plus over, before hair loss begins? Ya, me neither.

Since the first mention of the transplant, a few years back, I knew I would lose my hair. Every doctor I saw kind of mentioned it in passing, on the way to the “bigger” side effects like nausea, vomiting, mouth sores, infertility, etc. I’m not sure why alopecia caused by chemotherapy seems to be considered as a lesser of the side effects. Maybe because it’s seen as a vanity thing. Having hair, or being bald doesn’t have a physical effect on the body, and I suppose that when there are so many other side effects to be managed, hair loss just doesn’t seem to matter.  “It’s only hair.” Even I kind of felt like that, until it started to happen.

When we decided that the transplant was a go, I went out and cut my hair as short as I felt still looked good. Surprisingly, it was a big hit and made me wish I had done a long time ago. Ha!

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Left: Before before (the right side is braided…a faux shave), Right: After haircut #1 (the right and left sides are both shaved, kind of like a mohawk without the “punky” spikes.

I decided to wait for the first strands to fall in ernest, before shaving it down. I didn’t want to wait until too much fell, because I felt that would be traumatic, seeing it get patchy.

It was strange, I was finished chemo, and feeling better.  Things had returned to “normal” and mom was planning her return home for a while, except..I was waiting for my hair to start to fall out.

I had these delusional hopeful thoughts that maybe I would be an anomaly (hey, it could happen…look at what else has! ), but alas I woke up 12 days after my first dose of cyclophosphamide with the evidence on my pillow.

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Rise and shine!

It wasn’t coming out in clumps, but definitely in handfuls when I ran my fingers through it, and you know what was strange? What freaked me out more than seeing it and knowing it was just the beginning, was seeing it as evidence that noxious chemicals had done it, and while I felt better physically, the chemo was still taking a toll on my physical body.

Not to dwell, I decided that I would shave it…or more accurately, hubbs would shave it. So on the 18th of August, this happened:

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Luckily, my head was neither misshapen or had any funny spots.

My sister and her fiancé joined in by FaceTime, and all in all, I felt ok.  I had been anticipating it, and since I had made a plan and bought a couple of chemo caps, and a wig, just in case I was too weirded out when the time came, I felt in control of what was happening (however possible that was).

Now the perks of being bald in the summer are that it is SO MUCH cooler. No, like really, so. much. cooler., and I found myself pretty comfy walking around at home, and in public with my “buzz cut”. I got the “are you sick, or trying to be hardcore?” stares, and sympathetic nods (usually from older ladies who I guess chose to believe it was illness and not really a choice) – but it was okay.

My dad even shaved his down in solidarity:

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I see the resemblance, do you? :o)

All in all, things were fine, pleasantly surprising actually…until it started to get patchy:

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There was no denying it.  This was not a choice. Chemo caps have become a necessity when leaving the house, and while I haven’t yet had the guts to wear the wig (it looks so…wig-like), I plan to do so when the weather gets colder.

The plan now is to shave it, I just haven’t quite gotten there yet…I haven’t wrapped my head around being bald bald, even though it seems like not much of a jump from patchy…it is, in my head anyway.


Quiet is good.

Tuesday, August 9th & Wednesday, August 10th

I was up bright and early at 8 am on both days, and was able to shower. It’s so nice to feel clean!! Mom made breakfast, and I took all of my meds. My stomach was a little upset and burned, but breakfast and a cup of tea seemed to help.

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Mom gave me my neupogen injection, and I settled in to watch some Olympics.

On Tuesday I woke from an afternoon nap, feeling like I had gotten hit by a truck. I wanted nothing more than to go back to sleep, but my body was angry from sleeping so much already. I had a crick in my neck, and my arms just felt so heavy.  I made it through dinner, and was in bed by 7pm.

Wednesday was much the same in the afternoon, but I managed to stay awake until 8pm. #wildthing

I can only describe the way I feel the past couple of days as a general malaise.  My temp is good, I’m not sick sick, and I have no real pain to speak of. I’m just so tired. Tired, but restless…and a little nauseous. Kind of like getting over the flu.

All in all though, a couple of quiet days! (I’m not complaining)


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.

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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