*!%*# Could a girl get some sleep, already … *!%*#

September 29th, 2016 (Day +6)

The feeding tube was taken out today because, although it eliminated much of the pain on eating/drinking, it was adding to Jess’ throat irritation.

Her pain is much better controlled with the Fentanyl pump. Even with all the scheduled meds she is on for nausea there is still breakthrough and maxeran helps with that. Diarrhea has been a problem as well, I suspect because of all the fluids and no solid food to speak of.

She was able to have a shower and we played a game of Skip Bo. Even under the slight influence of narcotics, she beat me!

September 30th, 2016 (Day +7)

I can tell the pain is better controlled because Jess has asked me to bring jello, mashed potatoes, baby food (fruit), and .. wait for it ..steamed broccoli!  We’ll see how much of it she actually eats but that she is fancying it is a step forward.

Little bit of urinary incontinence today (that’s exciting!) and she’s exhausted. The care is excellent but the CONSTANT vital checks, starting/stopping IV drips, pumps alarming, doctor, physio, pain doc visits not to mention having to get up, unplug all the pumps to pee every 30 minutes then plug back in and get back into bed there is very little opportunity for meaningful, rejuvenating sleep.

Tongue in cheek, she was looking forward to losing a bit of weight through all this; so far, she has gained about 2 kg while eating only nibbles for seven days now. I suspect it’s fluid.

Because her platelets are low she is bruised all over, has been having nosebleeds, and has a big broken blood vessel in her eye that kinda makes her look like she’s been in a fight … which I guess, metaphorically, she has for a long time now.

October 1st, 2016 (Day +8)

The great news is that Jess now has some white blood cells to speak of !!!!!!!! She seemed to have bottomed out at <0.02. The doc was ecstatic today when he came in because she’s at 0.1! Definitely going in the right direction … com’on new immune system … you can do it! I believe in you! You can be anything you want to be when you grow up, even a new Jess!

Jess had a mostly sleepless night because of some of many of the interruptions mentioned previously. Her legs and feet are very swollen from the copious IV fluids. This morning the doc halved her IV hydration because she is taking in more water/ice/Ensure by mouth now so she should see some relief from the constant bathroom runs and lower leg swelling over the next 24 hours or so.

She received a bag of platelets earlier this afternoon.

Mama bear that I am, her room has been prepared for sleep (shades down, check; white noise on, check; sign on the door that says “quiet please … she finally sleeps”, check) and I’m sitting guard. No one is disturbing her unless it’s imperative and they get past me … we are now one hour into a lovely nap.

This post has not been reviewed by Jess; she would never have let me tell you about the urinary incontinence or the diet plan 😉


All is going according to plan …

September 26th, 2016 (Day +3)

A quiet night was not to be. Around 11 pm Jess started running a fever and this continued to climb over the next hour. Cardinal rule of being an SCT out-patient is any temp above 38 degrees for more than an hour is to be reported. So we reported and, at 12:30 am, we were on our way to the hospital. The term “out-patient” is actually a misnomer. She is not really an “out-patient” she is simply out of the hospital building; part of the program means that they have a bed available for her on the unit at all times, just in case (even if it’s in the SCT day clinic area, until they can get her on the unit). And she doesn’t go in through Emerg she goes directly to the unit (5 west).

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“Home away from home …”

Upon arrival, she was started on an IV antibiotic (Pip/Tazo), and given IV fluids. Blood was also drawn for cultures. I left her there at about 2 am, knowing she was in good hands.

September 27th, 2016 (Day +4)

Jess had a chest x-ray, was given blood and platelets. They’ve inserted a feeding tube until the mucositis clears enough so as to allow her to eat and drink freely. She needs to be an in-patient because of the feeding tube and the IV antibiotics. The impression is that she will be in until the stem cells begin to engraft (at which time the mucositis should begin to clear up), probably a couple of weeks.

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Even with the feeding tube Jess is able to eat what she might fancy/be able to get down

September 28th, 2016 (Day +5)

“I’m takin’ the roll of paper towels for a spin…”

Jess is settled now in the room that will be home for the next couple of weeks. A pain doctor was in to see her today (I’m getting the impression the mucositis is not normally as painful as Jess is finding it) and she will be started on a pump because, even with the fentanyl patch and the IV dilaudid, she still has pain and isn’t able to focus on much else (TV, e-reader, card games, etc). We expect this will be the status quo for the next couple of weeks. All the pain meds are making her very drowsy (and quite comical at times .. hence the title of this particular post).

It should be noted that later Jess may clean up correct some of what I post because, while she is proofreading before I post, let us just say that she may not have all her faculties all of the time. That is, I had to wake her up mid (her) sentence to tell me what she wanted edited. It went like this “Jess, Jess … ya sorry mom what were you saying? No Jess ..what were YOU saying?”


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.


Update from Mom

Hi all,

This is Judy (aka mom). Jessie hasn’t been staying on top of the blog for the past few days and this is just a quick check in to let everyone know that things are good. Symptoms are pretty well managed and we are excited for day 0 (aka her new birthday!) as planned for tomorrow when she gets her harvested CIDP-free cells back.

Stay tuned!


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.