Tag Archives: pain

Sprung 2.0!

October 2nd, 2016 (Day +9)

WBC = 0.7 !!!
Jess was awake most of the day. Doc says maybe she can go home on Tuesday (Oct 4); so not a few weeks as originally discussed. They seem more motivated to get her home than when we were first discussing the transplant plan. Better to be home in your own bed if possible.

Using much less of the Fentanyl pump for pain control. Rinsing with”Magic Mouthwash” before meals has helped Jess eat a little more; it provides temporary freezing that wears off fast. Ensure hurts significantly going down but Resource, a different liquid meal replacement option that packs ~450 calories, hurts much less. We played two games of Skip Bo. Yesterday and today we’ve walked around and around the circuit (on the unit). This evening we commandeered a wheelchair, figured out how to make it dance with the IV pole, and ventured down to the quiet 2nd floor and then even outside for five minutes! Glad to say the incontinence was very temporary and seems to have cleared up.

October 3rd, 2016 (Day +10)

WBC = 2.4
Jess was able to eat almost all of her breakfast; Magic Mouthwash and Sulcrate now giving sufficient relief to eat soft foods. This afternoon Jess was untethered from all but the Fentanyl pump. Happy to report that she hasn’t needed to use it since early morning! Went outside again this evening for a little while. It has been sunny, warm autumn days in Ottawa.

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“What’s that you say IV pole? You’ve got nothin’ hanging? Sucks to be you ;)”

October 4th, 2016 (Day +11)

WBC = 4.5
Jess didn’t need the Fentanyl at all thru the night or this morning so it is gone now. Yay! We were told during the planning meeting that if she did get mucositis it would clear up as soon as the WBC count started to come up and that’s exactly what is happening.

Jess was discharged at 2:30pm (sprung 2.0!). First stop was The Cupcake Lounge for a German chocolate cupcake for Jess.

She had a soak in the tub, clean sheets, and all kinds of PVRd shows to catch up on but mostly sleep won out.

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Sprung 2.0

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She SOOOOOOO has her priorities straight, eh? That’s my girl!

October 5, 2016 (Day +12)

WBC = 3.9
Today was a hospital check in (BMT clinic) day; we are there for two hours while they check vitals, draw blood, and wait for the results to come back. All is well. Jess has taken nothing for pain for the past 24 hours and only very occasionally something for nausea.

The decrease in her WBC was expected by the team since she is no longer getting Neupogen. She was getting daily injections up until yesterday.

Tomorrow will be a rest day … no clinic appointment! Yay!

 

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*!%*# 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.


Feelin’ fine

Monday, August 15th

I woke up Monday feelin’ fine. No fever, no nausea, and no bone pain! Apparently, bone pain stops once the hematopoietic stem cells (HSCs) (that the neupogen is working so hard to multiply, and that will be used in the transplant) are released from the bone marrow, into the peripheral blood. They then float around in the blood stream until they are collected using aphaeresis (think a process similar to dialysis).

Interestingly (hey, the more you know!), HSCs look and behave in culture like ordinary white blood cells (WBCs), and laboratory scientists use markers that appear on the surface of the cells to find them. This process is neither easy, or cheap.

So, for our purposes at this point, we were looking for a high white blood cell count. It stands to reason that, the more cells that look like WBCs (easier/cheaper to see), the more HSCs there will be when it comes to selecting them out.  Finally, a normal, healthy WBC is between 4.5 and 11 x 109/L.

Well, when Dr. Atkins came to see me in the late morning, he informed me that my WBC count was high enough that we didn’t have to wait until Wednesday to do the collection and that we would be doing it a day early (tomorrow/Tuesday)!!

The rest of the day was spent visiting with mom in the afternoon, then the hubs in the evening, and finally getting a blog update posted before bed.

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Ahem, I may have beaten mom two games to ZERO in SKIP-BO…


36.9°C

Sunday, August 14th

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We were still sitting in the waiting room when it hit 12:00am.  To their credit we arrived at 11:30pm and I was in a bed in observation by 12:30am. The nurse did my vitals, and they were perfect. My temp was again an unremarkable 36.9°C! I met the resident (Dr. Perry..I think) with the BMT team and had my blood drawn. Once they decided that I was indeed staying for a dose of antibiotics (better safe, than sorry) the hubs and mom left for home (because I was feeling fine) around 1:30am. When my results came back shortly thereafter, Dr. P confirmed that my BMT doctor was happy I was there as my neutrophils were “very very” low.  Folks, even if he just decided to keep me because it was already 2:00am, I felt like at least we hadn’t come in for nothing, nothing. Next up, I was waiting for a bed on the floor, and as it was the middle of the night, it was going to be a while.

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These boards are everywhere, and they’re screwed to the wall. I love that they include the patient’s doctor and nurses names. I also kinda like the pain scale, because I think people often have trouble assessing their own level of pain.

Saturday night in observation was about exactly how you would expect: Two drunks, a couple of falls, a handful of people who could have gone to a walk in, and one elderly lady who was VERY unhappy about being at the hospital. We were all in a big room, sectioned off by curtains. There was no sleep to be had.

About 3:30am, I needed more Dilaudid for the bone pain, and Maxaran for nausea. At 4:30am, the 2mg of Dilaudid they had given me wasn’t cutting the pain enough,  nor was the Maxaran. They upped the Dilaudid to 4mg, and allowed me to take one of the olanzapine I had brought from home. Both did the trick, and it went Dilauded every two hours after that.

Between 5:00am and 11:00am, when mom and the hubby arrived, I alternated between trying to rest and wandering around a little away from the melee. By noon I was in a semi-private room. Then, my room mate left minutes after I arrived. For however long, I had a room to myself! The hubs and mom got me settled and then left to let me sleep, and I did, on and off for the rest of the day and evening.

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The view from my new room. LOL


You had one job…

Saturday, August 13th

We woke up Saturday to pouring rain, which was fine by me because I was under a sort of house arrest as my neutrophils continued to drop. My first temperature check was normal-low (36.5°C), and I settled in to watch some more of the Olympics.

We had been using a tympanic thermometer mom bought when she arrived. Why tympanic you didn’t ask? (This is important later.) Well, at my planning appointment for the stem cell collection we were told that there really was no appreciable difference between how well tympanic and oral thermometers worked and more expensive equals better, right (admit it, in some instances you think so too)?! Tympanic it is!

We had noticed that between Monday and Friday, I seemed to run cooler than the “normal” (ie. average) 37°C, but that happens and when mom tried it it read 37°C exactly.

I now know that there is a big debate between those who believe the tympanic ones are better, and those that only trust the old school oral ones. People Doctors actually get quite heated about this.

Those in the oral camp *snicker, I’m twelve* say that the tympanic one isn’t as accurate. Tympanic converts say that that just isn’t true, and they argue that they are easier to use.  Apparently, the research says that the oral one is only more accurate when you get it in the exact right spot under the tongue.

So…at my Friday appointment, armed with our notes from Thermometers 101, as Erin stressed the importance of my temperature as a sign of a possible infection my body cannot fight, mom asked her opinion. Erin left the room, and came back with an oral thermometer that she gave to us saying, “tympanic ones run cool.” Roger Dodger.

Now that I’m sure you don’t have an opinion about thermometers, we can continue.

Saturday I was tired, a wee bit nauseous, had a bit of a headache, and was a little achy all over. This was no surprise. I was on day 6 of the neupogen shots, and had been warned about bone pain. We stayed quiet, and started a jigsaw puzzle to pass the time.

Jigsaw puzzle

Quiet, rainy day fun.

By late afternoon, the pain in my lower back, hip bones, and femurs was distracting and took my breath away when I moved in to certain positions (like coming down stairs).  I was wary of the codeine that the BMT team prescribed because it has given me stomach trouble in the past, and felt like I shouldn’t need the Dilaudid they had also offered. (Silliness, now that I stop and think.) By dinner time, I was willing to try the codeine (15mg), and when that didn’t help, I finally jumped on the Dilaudid (2mg).

At 3:30pm, my temperature taken with the (hospital provided) oral thermometer was 37.1°C, at 6:30pm it was 37.8°C (and 37.7°C), and at 9ish it had reached 38.1°C. The team had told us 37.5° meant be vigilant, and take it more frequently, if I wasn’t also feeling awful. I wasn’t feeling awful, I had bone pain. A temperature of 38°C was the “consider this one of the reasons for the emergency contact numbers” number.

I have now learned another thing along this journey: pay close attention to which number is the “in case you get a fever” contact number.  In fact, put someone solely in charge of exactly that.  (The irony that I joked about this being important in my last post has not been lost on me, don’t worry. *eye roll*)

Here’s how this went:

Beep beep beep thermometer reads 38.1°C.

“Okay, time to call the BMT team. Let’s get the number.”

Mom finds the sheet with the contact numbers.

BMT contacts

“Here it is. No wait, that seems to be the pager number for the nurses from Monday to Friday, 8-4. Well, there’s one at the bottom here that says ‘EMERGENCY ONLY … call and ask for the… hematologist on call’.  Well, this isn’t an emergency, it’s a maybe fever, and we don’t need a doctor. We just need a nurse from the team.”

“Okay, let’s try this number that’s in the green information book they gave us.” Mom called and explained who we were and why we were calling. Success! The operator told us, “Dr. X is on call for that, we’ll page her and she will call you back.”

Seventy-five minutes later. “Okay well, at 2 or 3 am this may become an emergency, so let’s call the ‘EMERGENCY ONLY number .. ‘”

Beep boop beep boop

“EMERGENCY .. what’s your emergency and location?”

“Oh my, we really only want to talk to the hematologist on call for the BMT team.”

“Hold on while I transfer you off of this EMERGENCY line and onto another one…yes, Dr. Atkins is on call tonight for the BMT team. We will page him and call you back.”

Thank God.

Twenty minutes later, he had called us back and we are on our way to the hospital, per his direction. They would be expecting us.

Jamey and Jess Hospital

Waiting for mom to park the car.

When we arrived at the hospital (through emerg, because admitting is closed at 11 pm) the triage nurse took my temperature with both a tympanic and oral thermometer, and both are…wait for it…PERFECTLY NORMAL!

Triage Aug 13

Well at least mom looks amused.

Sitting in the waiting room waiting for an observation bed, we (half jokingly) muse whether we can just sneak off home to bed. We can’t, and mom (justifiably) doesn’t feel like she can take me home without an accurate thermometer to depend on. So, there we were tired, concerned, annoyed, in pain (me, although debatably the hubs and mom too *smirk*) waiting to finish what we started.

Does anybody know of a good thermometer?

To be continued…