NHL Cyberfamily

Non-Hodgkin's lymphoma support

 

Michael's SCT journal

 

Michael's stem cell transplant journal

Read Catherine's (Michael's wife) ABCs of a stem cell transplant

Wednesday November 23, 2016 Day -6

It was the night before admission and all through the house...
Not a creature was resting we're all anxious as if heading for the jailhouse
Two loads of  laundry had been  placed in the wash with care.  
Nope, no need to worry I am not writing this part in bad rhyme, on a tear. 

I have been reading through the journals on the Cyberfamily website to get ready, and there are a couple of things that are different in Halifax, Nova Scotia where we are heading.

First the hospital is an older building. And I mean REALLY OLD and overdue for replacement.  Even regular patients and visitors are not allowed to drink the water, because they have an ongoing issues with the ancient pipes.   Showers will be totally off limits for him, so tonight Michael plans to have a shower.  He got some new bigger plastic kind of bandages to put over his Hickman port, courtesy of the VON this week, so is looking forward to trying that out.  I had been grumbling about how tough it was to find something to use as a wrap over the port and she went out of her way to bring us some from their supplies.

The other thing is we do not have an admitting time.  We are supposed to call early in the morning to see when his bed will be ready.  We live an hour away from the hospital when there is no traffic. So I am worried that we might forget to call! Which I know isn't very likely.

And lastly I have no sense of the specifics of my role as a caregiver for this next part of the experience, I do not know what I am supposed to be getting ready to do, beyond hanging out and entertaining him and tell his family how he is doing, I guess.

Thursday November 24, 2016 Day -5

A sign of how frazzled I have been, i have lost my ability to count...yesterday was day -6 not day -7 and therefore today is -5

Today getting admitted was a bit confusing.  We had been told to report to the 11th floor in one building, but it was supposed to be the 10th in another.  And there were all these signs about surgery times at the admissions clinic that made it seem like we were in the wrong place.

When we got to the transplant unit  8B- an hour after we were supposed to be there, there was no one around, the reception area/nurses station wasn't just empty - it didn't have any furniture, and when we tracked someone down,  there was no bed in his room.  They were just in the process of finishing a relocation renovation of some kind.  Several people had conversations about what to do with us, until we finally decided to just go for a walk downtown and come back later.

Michael was started to lose confidence in their competence at this point.  But he had a good cup of coffee and a really yummy glazed donut, and when we got back his room was ready and a bunch of people introduced themselves, various nurses, took some blood, and measured his weight and height, (the resident , Jake was indeed in middle school when Michael was first diagnosed), they spent a lot of time explaining stuff in a way that sounded like they knew what they were talking about which was reassuring.

Then when the supper delivery guy came through, he had an extra meal, so we both got to have meatloaf, mashed potates and carrots with tapioca pudding.  Tapioca is actually his favourite, so that was good too.  And his room has a television with The Sports Network.  (we don't have cable tv anymore in our house, that is a big treat)

Because he had nothing to do until morning, they told us he could leave for a couple of hours. We were going to walk down to the library - the Halifax Public Library is a marvel, and is nearby and they had an interesting speaker this evening - when I got a text from our friend who was going to be looking after the dogs telling me that the door I was supposed to have left open was locked.  

So I drove the 68 km back home this evening. Fortunately the weather was good.

He wants me to bring him back his weights, another hat, along with some other comfort things, like jarred peaches, a box of suckers, and better toilet paper.  I will take your advice and not expect to be called upon to do too much entertaining, I have a couple of knitting projects, and a really good older Ian Rankin book to read.

Friday November 25, 2016 Day -4

I didn't get to the hospital until noon, it took me a while to get everything rounded up to bring to him (i had to wash the fuzzy blanket because one of our dogs had slept on it, when Michael is not home, our youngest dog takes advantage ) Micheal was finishing up his lunch and had been hooked up to the IV machine by the time I got there.  

They started the Etopiscide at 1 pm and he was done at 6pm. the extra drug cocktail, the benadryl, Ativan and dexamathasone really seemed to keep him mellow. Nurse Tricia was assigned to him all day, we also got to met Dr. Hasagawa, who is in charge here until Day +7 then another doc takes over. ( they rotate on a monthly basis) at first impression,  everyone here seems to like their work which continues to be reassuring.   

He has figured out the square footage of his room, and the length of the hallway, in the pressurized area and how many laps make a mile. so far he has 2814 ft steps in since being unhooked from the Etopiscide.   But because he wasn't quite getting rid of fluid as quickly as they would like, he got a dose of Lasik and he can't walk as far down the hall, without having to rush back.  

Because today was the feast day of St Catherine, I brought in the traditional taffy- which tastes just like Halloween candy - and have been giving them to everyone who came in, most of the nurses thought it was cute,  I think the Dr thought it was weird.

Saturday November 26, 2016 Day -3

Well it is Saturday night and we are hanging out in his room watching the Toronto Maple Leafs play the Washington Capitals in the featured game for Hockey Night in Canada, it almost feels like a regular Saturday night at our house, except that there is great big IV stand sitting beside and plugged into Michael, and somehow those Leafs are winning.  

 He had his Melphalan infusion this morning, and the various side effects are starting, he is retaining fluids he weighs 6.4 kilos more than he did yesterday. They gave hom so more Lasix, so was running to the washroom a lot.  And the nausea is being kept tentatively at bay with assorted medications, but he is hiccuping and burping up a storm.  

We had a bit of an argument this morning about how to fold up the cot and stash it away, but that was mainly because 450. Sq ft is really small for two people and we are adjusting to this situation . I drove home to tend to the dogs, to do laundry, and bring back yet another different pjs and some more clothes hangers to organize stuff in his wardrobe. And came back.   

He managed to get outside for a bit today too, which was good. And has wandered the halls. His white cell count is currently 11, so he is bracing himself for the drop.   I have provided Greg with the mailing address here at the hospital should anyone want to send him a note of encouragement.

Monday November 28, 2016 Day -1

 Michael had a rough night, with bad dreams. I had gone home, so he was alone.  And they had given him lasix, to deal with the fluid retention, so he was back and forth to the washroom frequently.   

By the time I got back, it was about noon,  he was still having a rough time, plus nausea had kicked in. They gave him some pantaprozole, and zofran, and for extra measure some diovol, which worked to some extent, but not fully.   He managed to eat some chicken soup, and he talked on the phone with both his brother, and sister, (they both live in Ottawa). He has still been retaining fluids,  so had another dose of Lasix in the afternoon.  

Later in the afternoon after it had worn off,  we walked  around the block.  It is a pretty long walk, it goes around the main hospital, a clinic, and the pediatric hospital.    A friend from our comunity came by for a visit, another "lymphomaniac" who has been living with waldenstrom's for several years and is currently on a clinical trial.  He was extremely upbeat, positive and encouraging.   I also dropped by the floor chaplain's office and arranged for Michael to receive communion, he missed Mass this week. Rev. David has been in the job as interfaith minister here for the past 15 years, and is very perceptive.   

I had some errands to run but decided to wait til after his transplant, because his mood was still pretty low.

Tuesday November 29, 2016 Day 0 - Transplant day

I think Day -1 got stuck in my outbox, and with this tablet I am not sure how to spring it loose.  I will be able to on my next trip home, though.  

Today was off to a very slow start. he had a lot of nausea, and trips to the washroom,  over night, and didn't really wake up until 9 am. He had no appetite for breakfast but managed to eat half his cream of wheat by the time lunch arrived.  He didnt eat his lunch, except for the soup.  His white blood cell count is now at 5.5, his platelets are 126, and HGB is 97.  The nursing staff was worried about his loose bowels over night, but by the time they put a hat in the toilet to collect a sample, that had calmed down pretty much.  

They brought in his frozen stem cells in a cart just before 1 pm,  as Russell described it, it was very cool to watch how they were double checked to make sure they were the right ones, and then massaged back to warmth. the coordinator of the program did all the hooking him up and making sure they were flowing,  and talking to him about the process.  It turns out that the cells that were collected the first day weren't useable, they were contaminated with some bacteria but they don't really understand why that would have been. He had produced enough though on the second day. This hospital uses a gravity feed delivery rather than a pump.  So it took about 30 minutes, throughout, the three people monitoring him and the machines kept talking to him to make sure he was doing okay. they talked about Harry Potter, Top Gun, lobster fishing, and our boy.  

It is really strange how that smell of creamed corn just shows up in the process.   

Because they have given him benadryl, Ativan along with zofran and Tylenol,  as soon as they were done he had a nap - a big one.  

I went and ran some errands.  I got him new socks, and returned a shirt, and got supper for myself.  The hospital is very accommodating of having us caregivers stay on site, but don't really provide amenities, I have met two other spouses (there are six rooms in this unit) so far, one of them has been here for 21 days, the other 9, and we all look kind of haggard, as if we are camping or something   Catherine -hoping that this email goes through, in Nova Scotia.

Wednesday November 30, 2016 Day +1

He slept fitfully and woke up nauseous,  his white and red cells are continuing to drop exactly as advertised. When the Dr came through, on her rounds, at 11am, he was still pretty sleepy.  He was so nauseous he couldn't get the acyclovir pills down so they are giving that to him intravenously.  he is having a tough time getting his head around all the different heartburn and nauseous medications he has been given, zofran, Maxxaran,  Diovol, pantaprozole,  and this evening before going to sleep, gravol.   

His attention span for reading is gone, he also didn't do his sudoku today either. His big excitement today was two new nurses he had never met,  doing an inventory of bed sores who were checking in with all the residents on the floor.  I left for several hours, to drive home, to feed the dogs, pick up mail, do laundry and make more chicken broth. when I came back in the evening his mood and energy level was better.

Thursday December 1, 2016 Day +2 Michael's random thoughts

Men's pyjamas options are really limited.  the stuff he normally sleeps in at home, are tshirt like, what he needs here because of his port are stuff that buttons up the front. he has been wearing plaid flannel shirts but they are a bit too warm, a store bought pjs tops, that I've found seem to be mainly cotton, seriously depressing looking and aren't warm enough,  I am starting to feel like John and Yoko Ono during their bed-in tour.  we have had at least six different people come into the room for various things while we were both still in bed. my bed is the tiniest roll away cot, it feels more like a nest.  I am not sure when they started allowing us to stay over, but everyone just acts as if it is normal for us to be wandering the halls in our pjs. They don't really give an orientation of where stuff is for us caregiver/companions, I only just found out where the shower is this morning thanks to another spouse who pointed me in the right direction ( I didn't even know thee was one) for instance.

This was a very quiet day for Michael, his white blood counts are down to 0.9, so they WILL BE monitoring his temperature every four hours.  And he is now pretty much confined to his room now. His appetite is very poor, they are medicating him for nausea with Zofran every 12 hours, also Pantoprazole, and a scopolamine patch like they use for seasickness, behind his ear. I think he ate all of two Popsicles,  and a tiny thing of apple sauce today.

He doesn't really like getting all this medication, but he hates the nausea even more.  They tested him for C. Difficult and he does NOT have it, which is good news, meaning that they will be able to give him immodium if the diarrhea comes back.

He slept for a big chunk of the day, but we did watch some star trek episodes, one of the tv channels has a combination where they play a Kirk, Picard and Janeway episode after each other. and now he is dozing while A Charlie Brown Christmas is on tv.  

The Dr warned that he will continue to feel this way throughout the weekend. I am staying over again tonight at his request. Plus I am worried that if I got out into the world I would pick up a bug and not be able to come back.

Friday December 2, 2106 Day +3

Just a short update today, Michael's white blood counts have hit bottom and as of this morning his hemoglobin is 104 and platelets were at 58.  He had even less of an appetite than yesterday.  His primary onco-doc came by for a bit of a visit, which was a surprise.    He slept a lot. But did manage two episodes of Star Trek.  His temperature was stable but now has creeped up a bit to 37.5 since the last temperature taking at 8 pm.  

He has also lost 2 kilos since he was admitted. And when he burps it is very painful. They are still giving him Zofran and Pantowhatever, they offered him an opioid pump, and something but he doesn't think he needs it yet.    I had to leave for a bit today, to cover an event for the community newspaper, I occasionally write pieces for, so he was alone for a while too.  When I leave the hospital it feels increasingly weird, and unreal for me.   

In today's odd thing,  the entire team which came by for rounds, the intern Jake, the head Dr. Hawesaga,  Dr Jenny and two women who I don't think I had met, were ALL wearing purple this morning. So was I.    Catherine in Nova Scotia.

Saturday December 3, 2016 Day +4

Today has been a tough day, he has a fever, thankfully they were checking his temperature so frequently to catch the rise, so they are giving him antibiotics, and this is upsetting his stomach,  and later in the day his bowels so he has meds for that, but they aren't super effective. At the risk of being too graphic,  he kept having hard deep painful burps, that weren't responding to the pantaloc for heartburn,  the zofran or the Maxxaran, for the nausea.   Hedoes not like getting all the medication, they keep offering more, and he says no. He also is spitting up some kind of clear slime that doesn't seem to worry anyone but me. His mouth is not sore though. 

All his blood counts are very down, his hemoglobin is down to 53 and platelets 38, he is very lethargic.  The nurse keeps telling us this is normal, as does the Dr. and the intern. if his hemoglobin  and platelets drop much more, though  they will be loking at transfusions. 

They took some extra blood and urine samples and sent him for an x-ray,  to check for any signs of specific infection. The chest x-ray didn't show anything to worry about. I stayed over last night and will again tonight,  my main job is to fetch crushed ice and popiscles. I also knit for a bit and read ALL of twitter today. And i did two loads of laundry at the hospital in brand new electronic stainless steel machines that look like they could fly to the moon. I haven't been outside but , a friend came by, Michael was not feeling up to seeing anyone, so she and I visited in the cafeteria for a bit

He sat up for a bit to eat some jello while watching the hockey game, but is still,subsisting on popisicles

 Sunday December 4, 2016 Day +5

Michael continues to progress exactly as they predicted.  He now has s pain pump attached to his IV stand - because his blood counts are so low, the white cells are still at 0, his mouth,  throat, esophagus, his whole digestive tract is pretty raw, and it hurts. Interestingly enough, he still hasn't lost his hair though. 

He had been very resistant to this, but Dr Hawsegawa made him take it so he can rest properly, and start eating,  she didn't like how tensed up his face was when he was sleeping, (she is very observant and attentive )

The various blood cultures came back, showing he does indeed have an infection, and most importantly he is getting the correct course of antibiotics for it. They have swabbed his mouth, as they think he now may have thrush too.

He also got a platelet transfusion this afternoon because those counts had dropped to 9 from 199 when he checked in.  His Hemoglobin count was high enough though for now. 

I feel so bad for him, he was in so much discomfort, he barely slept last night. And then of course every four hours someone comes in to check his vitals, usually just as he is dozing off. Today he can't swallow, he says his mouth isn't sore,  it is more that once stuff goes down he gets a spasm that pushes it back.  He can manage ice cubes and Popsicles, and that was all again today.

It is all so very hard. 

Monday December 5th, 2016 Day +6

Well today was a lot like yesterday. He is still not eating, I started choosing meal selections that I like, since I am eating his hospital food rather than letting it go to waste. He has started to receive mail, which was a super pleasant surprise for him.   

His counts are still low, his HGB is still above the threshold for transfusions, and his platelets bounced back.   They identified his blood infection, it is a staph of some kind  (i am currently in the laundry room, so can't check on the board for exactly which one.  He has a white board at the foot of his bed with the date, the name of the nurse of the day, and a bunch of of other official instructions.)  He continues to be treated with antibiotics for it.    

He has decided that the pantaloc is not working for him, and is causing his seriously hard burps/spasms when he tries to swallow, and he wants to look at other options.  He is still getting used to the pain control pump though.  

He received some sad, but not unexpected news, this evening. His mother passed away - she had just turned 94 and had been failing for some time, and she died in her sleep, at home.  He had been to Ottawa to see her in October, (for our international friends we live about 1800 km away) and felt that he had said good bye then, but it is still difficult.   

I am doing laundry in the middle of the night because his hair is now way falling out and he is shedding, and I figure tomorrow he should have a choice of clean shirts. it's the least I can do.

Wednesday December 7, 2016 Day +7 & 8

The last two days have been quite rough for Michael, he did not sleep
for more than about 50 minutes at a time last night, and the night before didn't manage very much more. He is having a
tough time with stomach spasms, that are not quite nausea, which makes it hard for him to swallow anything. The doctors and nurses do not  seem to be worrying about his not eating though.

They have identified the type of infection he has, it is coagulase negative staphylococcus and have adjusted the antibiotic so
he is now getting Vancomycin. This is contributing to his nausea and stomach  distress.  He has not used his pain pump in the last day, because it too, seems to make his stomach upset, plus it had the side effect of generating images straight out of the Game of Thrones for him into the room. (And we don't even watch the show)

He had a good visit with the Interfaith minister the Rev David, assigned to the floor, and they talked about his mother.  But he has mainly been asleep when the communion delivery nun has come by, or the RC chaplain has stopped by.

I am still pretty much living here in the room with him, I went out  and visited with a friend yesterday afternoon, and then in the evening I went out for an hour to pick up some soba noodles for supper, he had a couple of mouthfuls, so I went back tonight and got some more of it and he ate a bit more.

On the plus side, his white blood cells have gone up to 0.07, they
were at 0.03  and he did not need transfusions of either platelets or whole blood today, He received platelets on day 7.

There was a changeover of the Dr in charge today, and somehow we missed the rounds.  I suspect Michael was sleeping and i was down the hall talking to his other sister at the  time, and by the time we clued in it was too late in the day.

Thursday December 8, 2016 Day +9

He still can't swallow anything .  I am getting a bit frustrated in the way he describes this symptom to the medical team.   They ask "do you have any pain?" And he pretty much always answers "No".  because at the time they ask he is not feeling any. It is very painful when he burps or hiccups though. And any attempt to swallow water, now results in painful reflux like burps. He didnt even have any ice chips or popiscles today.

But because has said No to the pain question, they are already moving down their list. And hevtells them he can swallow, the pain happens further down the pipe. And some of the problem I think lies in the difficulty in describing gastric problems, nausea and heartburn, because it is all so subjective.  

He is not losing weight from not eating, because it looks like he is starting to retain fluid, his ankles and hands are a bit more swollen.

They seem to have worked out a combination of giving him his two antibiotics in synch with his Zofran,  and Maxxaran, and Pantoprazole,  with timed precision...for instance halfway through his vancomycin, they add in the Maxxaran, to minimize the nausea, but not the hiccups or burps.   This all  sounds a bit dry and boring to read, however it has taken up a lot of his energy to figure this out with the nurses over the past three days.  He had gotten dry heaves after a dose of Almagel/Diovol back on Day +4, and kept refusing that afterwards, when it was offered, but has gone back to trying it again last night. 

But the good news is that this morning his white blood count was 0.23! And his hemoglobin and platelets were above the levels where he would require transfusions. 

And his older sister who lives in British Columbia, came for a two day visit.  (She had been in Ottawa to help care for their mother) Tomorrow she is going to hang out with him and I am going to sleep.

Friday December 9, 2016 Day +10

Another day where his WBC continues to creep upwards, to 0.45, and his hemoglobin and platelets stayed above transfusion levels!
We got to meet the new Dr in charge, Dr. White, (they rotate on a monthly basis) when he came through on his rounds, he suggested an approach for dealing with the vancomycin induced hiccups, if they continue much more. And Michael has worked out a swish and swallow (with a mixture concocted just for him) and a swish and spit with the regular Magic mouthwash routine, and managed to eat most of a frozen yogurt made with cashew milk. He couldn't manage with spoonfuls, but did with a the sponge/foam toothbrush thing.

The cafeteria at this hospital has pretty good food. As part of their healthy food policy, adopted several years back, they have a bunch of gluten free and vegan options , and no deep fryer, for instance and it is very difficult to buy pop. The Tim Hortons coffee outlets don't even sell donuts. As a side effect of his previous radiation back in 1997 he has been left with lactose intolerance, so being able to buy the frozen cashew milk stuff without leaving the hospital was nice.

Today Michael's sister spent the afternoon early evening with him, while I went home, picked up the mail, tended to our dogs, did some laundry and had a bit of a nap. It is a 150 km or about 90 mile round trip for me. The weather is starting to look a lot more like winter and there were some icy conditions on the roads so that took a bit longer than usual. He sat up all afternoon, as they had lots and lots to talk about, AND he had a bit more energy. She is heading back to British Columbia via Ottawa tomorrow afternoon, it has been nice for him to be able to spend some time with her, even though the circumstances are sad, as they were dealing with details related to their mum's passing such as writing her obituary

It also was helpful for her to grasp how serious this whole deal is. There is nothing quite like seeing the number of Nurses, how often they check on him, the IV stand, the tubes plugged into his port, the precautions and warning signs and the energy of the unit and the size of the room, to realize this is a big deal.

Saturday December 10, 2016 Day +11

It is a cliché, but it is true... What a difference a day can make!  Michael was allowed out of the room today. I would not gave believed it 2 days ago.  His WBC was a whopping 0.94 and his ANC was 450.

He couldn't leave the floor, but he was allowed out of the unit, even.  Of course it is Saturday and the wing where he was allowed to walk was the empty surgery administration section, and he didn't touch anything, and wore a mask but still, it was pretty exciting.   

He still isn't eating, though  I made him a sort of smoothie with coconut milk, banana and some canned peach, and ice chips, that he managed to get down about 250 ml.  And I feel churlish fretting about it, but I still do.   

I took his sister back to the airport, today, about before that to the Seaport Farmer's Market, so I was out and about for a fair bit of time,  which was good for Michael, because he hadn't slept last night, he had a very quiet morning.   

This is our third Saturday night in the unit.  The doctor told him it could be our last, if he continues to rebuild AND is able to drink a liter of fluid.  So we are keeping our fingers crossed.

Sunday December 11, 2016 Day +12

Two fabulous things today.....the nurse unhooked him from Merv his IV stand, for a good 90 minutes and we got to go for a walk down the hall and back.  

He has lost some strength and stamina of course. He has lost 3 kgs or about 7 lbs since he was admitted, but as the nurse today pointed out once he stops getting all this hydration, we will really notice how much muscle mass he will have lost.  

This particular nurse is more old school,  she has been here for 37 years, compared to a bunch of the other ones who seem to have less than 10 years in, and is very pragmatic, she pointed out the best way to hook the power cord to Merv (by looping it on the unused bag holding prong at the top for instance), and remade M's bed for him.  And really nudged him to get out of the room.   The other good thing us that he is eating...some more of that smoothie with cream of wheat added in, then a couple of plain digestive cookies, and more than half a bowl of Udon noodles.   

All of this is possible because his counts are climbing, his WBC is 1.25 and his ANC is 650!   He did sleep most of the day because he couldn't get to sleep last night again, and took a sleeping pill at around 4 am.  He doesn't expect to do that again!

Monday December 12, 2016 Day +13

Michael continues to progress the way the way they want him to.  His WBC is 1.36, and his ANC is 650. So they are going to discharge him soon from this unit, maybe even tomorrow. They disconnected him from Merv permanently this afternoon, and discontinued all his antibiotics.  He has very little energy and still a fair bit of brain fog.  His brother send him a book to read while he is convalescing, and we both had a laughing fit when he opened it today.  

The brother sent him "The English and their history" by Richard Tombs. it weighs 5 lbs, has more than 1000 pages and super dense font. Some day he may read it, but not these days. He can barely manage the newspaper   He ate a bit more today, some chicken soup, and banana, but is having a hard time with the taste of water. When we leave here, we are booked into the Cancer Lodge, right next to the hospital, they only operate week days so will be moving again on Friday.  

We were hit with our first snowstorm today and I went out for a walk to mail off a Christmas parcel, being outside was a good way to deal with my thoughts. I am a bit regretful at leaving the security of this place and anxious about the next phase.  I found Russ' outline and instructions extremely helpful in that respect.

Tuesday December 13, 2016 Day +14

Michael was discharged from the unit to the Canadian Cancer Society Lodge. it was an extremely busy and tiring day not even counting the 6 trips to the car to cart all our stuff out of the room, we are running late for his first outpatient appointment so will update  more later.

Wednesday December 14, 2016 Day +15

It was very weird yesterday getting discharged from the hospital.  Michael really appreciated the quiet at the Lodge, and promptly took a long nap. Our son drove down fom New Brunswick (285 km away) for a quick visit as his exams were over, and he shoveled snow, put on snow tires,  picked up mail, took a carload of things home from the hospital and i took him out for supper, so it was a busy day.  Over the 18 days we were there we accumulated a lot of things, mostly food stuffs and snacks to tempt him to eat, and extra blankets and clothes.  He hasn't worn any of his pull-over-the-head shirts throughout this process for instance, instead wearing shirts that button so that his port is more easily accessible.  And because we have to check out of the Lodge on Friday (they close on weekends) I didn't want to have to carry it all out again, so it was important to be paring down.  His awesome collection of cards is now on the window sill in the Lodge, though.  

I feel really adrift now that we are on our own. This Lodge has space for 60 patients, a chef, communal meals, a common lounge and TV room and is lovely, and is next door to the hospital, but I had great comfort in knowing all those medical staff were in the room across the hall.   

Today was his first apointment at the Medical Day Unit. They drew blood,, took his vitals and gave him an infusion with potassium and magnesium. It was very crowded, every chair was filled. And of course any time I heard anyone cough, I got very anxious as to what they were touching.  I did not let M touch any doorknobs,  railings, elevator buttons, and wiped everything down. Our son provided an extra perspective, and had me clean his cell phone too.  

We walked over to the clinic and that was tough for him, tomorrow I think we are going to drive.   He ate some soup at lunch, then at supper he managed a couple of mouthfuls of stew, but then threw up last night. He was nauseous again most of the time he was getting his infusion today, so asked for some Maxaran which seemed to help. When he was done he was very tired.  

I went home this afternoon while he was napping again, and made him some chicken broth, which he managed to keep down this evening.   Something kind of cool happened today, when he was getting his infusion Joe Dipenta,  exec dir.  of the Atlantic Chapter of the lymphoma and leukemia Society, was touring the hospital and stopped for a visit with M. For the non north American sports fans... He is also a retired Stanley Cup championship winning professional hockey player (he was part of the 2007 Anaheim Ducks team) which in this part of the world, makes him sort of like royalty.   Tomorrow our appointment is for earlier in the day so we are going to need to set the alarm.

Saturday December 17, 2016 Day +18

Yesterday was a super tough day. He was so weak in the morning, he couldn't walk.  I had to get two men to help him out of our room, into a wheelchair and the car to drive across the road. He had had severe nausea the day before, and a headache, and what sure looked like a fever at 3 am, but he argued was a case of wearing too many clothes, in too warm of a room.   

The nurses got him another script for anti nausea medication. Gave him extra potassium, along with magnesium, and fluids and he bounced back a bit, but I was quite worried about him.   Fridays the Lodge closes down for the weekend, and we are staying at the house of people from our church, who we don't know all that well. When we got there M stayed up to visit and chatted for several hours, so his energy level was good in that respect. As soon as they left, I Lysoled their house  (thanks again, Russ for the advice ;)) even though she her house cleaner was leaving as we got there.   

He also ate two bowls of chicken broth and kept it down, which was even better.  Being in a home kind of environment was restorative for him, (even without Wi-Fi) and this morning he was sooooo much better, even though he is still dehydrated,  he was able to walk into the hospital, and while he was getting his IV, he also drank a fair bit.  

His counts are going to do their thing, his WBC is 2.2 and his ANC is a whopping 1119,  and his platelets and hemoglobin are above transfusion levels.

 

The ABC's of a stem cell transplant

A is for Apheris machine pumping, and collecting stem cells,
It's a funny contraption, knobs, tubing, all the whistles and bells
a side attachment, warming up blood, next to the screen face
makes it look a bit like the Robot in Lost in Space.

B is for blood work results to add to the  binder,
brimming with side effects, instructions to keep as a reminder
along with reports, and results of tests
we keep aiming for personal bests

C is for Calendar, that is starting to firm up.
First entry is the admission date,
To heck with city traffic, don't dare be late.
From that point, the medical team steps up

D is for dentist, that appointed is booked,
for at all your teeth must be looked.
Making sure your mouth is as clean as can be,
and all your fillings as solid as a tree.
when you are in that immune compromised bubble
Those teeth can't get you into trouble

E is for Etoposide the next chemo drug they will administer
reading about it makes it sound quite sinister
there are pages and pages of side effects,all of them serious
(trust me on this, no need to google, you don't want to be curious)
And precautions to take for instance, there is to be no French kissing
Best to load up now, so you don’t forget what you're missing

F is for Fragmented Sleep, you can suffer from that really bad
the closer to treatment especially, it's enough to drive one mad
After a few hours asleep, your ears start to ring,
you awake, and your nerves and anxiety sing

G is for GCSF is another drug you can be getting
It stands for Granulocyte - Colony Stimulating Factor, if you're curious
It's a support medication, white blood cell growth it is for abetting
I am told the shots sting something furious

H is for Halloween of course
A night of goblins and witches
Or even a scary person on a horse
But if you want something that gives you the twitches
Let me tell you about a port named after some dude named Hickman

It's plastic tubing inserted into a main artery, under sedation
Into the skin by your neck, a tiny opening is stitched up pretty slick
Ending in lumens, either two or three, you will have this for the duration
They will stay in place for the next three months its not a fix that is quick

The Hickman Port was used to hook up to the Apheresis machine
(Go back to letter A to know what I mean)
And will be used for that next chemo blast
With all this tubing, you look like the Borg from a Star Trek episode past

I is for Infection, it's our current enemy number one
You can forget all the other monsters, and fears, real or pretend
we have to get the real enemies on the run
if not stuff, like pneumonia or staphylococous can drive you around the bend
While we wait for his stem cells to regrow and hold fast
And for months later, your immunities will be a thing of the past

J is for Johnny shirt
Don't ask me how it got that name
Drab, they are easy to keep clean from the dirt
Worn back to front and in layers, all patients look the same
The main purpose is to give easy access to parts of the body
Keeping your shoes on helps you feel like somebody

K is Kidney function – this is another pre SCT test
For 24 hours you have to collect your pee in a jar
To much information I know, for family and friends near and far
But mainly I hope that your aim will be the best
The requisition specifies creatinine clearance
The test shows the docs how well your kidneys are working
For this one I am pledging non-interference
you're on your own, you can't count on anyone lurking

L is for Lungs – Pulmonary Function was another test to pass
hopefully it is done by a lovely lad or lass
The test plays an important role in the management of noninfectious
pulmonary complications,
says a paper in the January 2005 edition of the Journal Nature,
after hematopoietic stem cell transplantation

M is for Mozobil, now this drug is a doozy
The side effects I am told, will make you woozy
It's an expensive drug and one that is not always given
It pushes stem cells and, out of the bone marrow they are driven
The bottom line, the drug can work like a cell whispering Cesar
And there will millions of your stem cells sitting in a freezer

N is for Non Hodgkins Lymphoma – lets talk shall we for a minute
about a condition that is defined by what it isn't
Who came up with an idea that bright?
We don't call rain "not sunshine", or day "not night"?

Then by splitting the diseases into two parts
The Hodgkins are less complicated, the Non Hodgkins more so
a power point presentation worth  of acronyms, types and treatment darts
some grow fast and some slow

And among the Non ones are so many types at least 60 with different layers
With Non Hodgkins, or Nhl, take care when googling less you get hockey players

O is for Opiates and Opioids -  the full range of pain relief
So you can manage and the pain doesn't act like a thief
Stealing your sleep, well being and healing
We are told they are going to give you a pump
Which sounds easier than injections in the rump

P is for PET Scan  - another diagnostic test you can have done
Positron Emission Tomography if you didn't know, you are not the only one
The machine will detect gamma rays – like something out of science fiction
and will help to show the shape and size of tumours, if they match prediction
It is a super duper expensive machine – and in Nova Scotia it is fairly new
In earlier years to have this test you had to travel in a jet the skies so  blue
My main question is when they were naming it, were they in a fog?
Another machine is a CAT Scan, for symmetry couldn’t they call
this one a DOG?

Q is for Queue, lining up and waiting, there is so darn much of it
Some waiting time is short and others are a long sit
At one appointment the waiting room was full and stayed
that way for hours
You could have taken your time leaving the house, and taken extra long showers

R is for Rituxamab, another IV drug, one given in concert with others
It is a monoclonal antibody given routinely now for cancers of the
white blood system
It targets immune system B cells, specifically destroying the protein
CD20 is its stratagem
It is a fairly recent development it didn't exist at the time of our mothers

S is for Stem cells
They are the building blocks, they are what this is all about
They seem magical, they are the cure of the day, without a doubt
These can become red and white blood cells
They won't grow muscle, nerve, other tissues or bone, they are missing
those whistles and bells
They aren't totipent or even pluripotent, but we don't care, that isn’t needed
This cancer is of the lymphatic system and we need those
white blood cells reseeded

T is for Toilet Paper, No word of a lie
In the 12 page handout for an Autologous Stem Cell Transplantation instructions
They suggest you bring your own two-ply

U is for Understanding,
so much information about a Stem Cell Transplant to digest
to research, read and grasp, the internet not withstanding
You really need your mind to be at its best
From the moment you hear the words, "Mister, this is serious"
You have to fight through brain fog to figure out what you need to know
(While a part of you still hopes - you wish – they're joking or delirious)
How to reach a decision, options, success rates, which treatment,
clinical trial or no?

V is another toss up, for VON or for Veins we can't decide
Veins can be a problem, the VON not, so I choose both, side by side
If your veins are shy, they retreat when being prodded and poked
The Victoria Order of Nurses show up whenever they're invoked

W is for Wall, not the kind you build with two by fours or to stop a flood
but a wall motion study to measure your heart's ability to pump blood
First they give an IV line and inject some radioactive dye
and watch your heart beat while you are as still as a cold war spy.
For what's to come you will need to be at your best
As Springsteen would sing you need to be tougher than the rest

X of course is for X-Ray, it couldn't be any other way
Cause Xylophone, Xerox and X-Men don't fit into this wordplay
You will have your fair share, the number you will lose track
To check on progress and make decisions, it will be a regular call back

Y is for Yes, cause getting ready for a Stem Cell Transplant intent
Wouldn't be happening without your consent
It is the fashion to talk about consent that is enthusiastic
But I can tell you, signing these, is anything but ecstatic
There were several to be inked, all the forms are long and dense
Listing  side effects, precautions, dangers they dare not condense

Z is another no brainer - it's for Zofran
As my friend says, it is a miracle drug
Used for serious nausea, not for just any old stomach bug
Despite any side effects of this one, you can be a super fan
We hope it will work again, to deal with strong emesis
And the only word I can find to rhyme is with that is apheresis

I've now gone from A to  Z, my pre SCT ABCs are complete
If you've read so far, thanks for not hitting Mute or Delete
I hope I have distracted you, or brought you a smile
As you get ready to hang out in the transplant unit for a while

 


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