Wednesday, 30 March 2016

What do you want to know?

I'm feeling almost recovered from cycle 6. Enough that I'm starting to think about working on my transplant story during the next rainy day. I'm thinking about how to break up the story as it seems pretty heavy and dry at times that I thought some interesting essays or stories in between would help. It would also help my anxiety if I could write about something other than my transplant experience and panic attacks. We all need a break from all the talk about poop and blood.

However, I'm a bit stuck with what to write. I have a few ideas and a few 'essays' (aka old blog posts) that I think would work but I'm wondering if there is anything specific about the transplant process, living with CF, cancer, or diabetes (I have a lot of issues) that anyone has been wondering and would like answered? There are no wrong questions or topics. I'll talk about anything. I mean, you won't get the answer for awhile, and only if I ever actually finish this book, and you buy it, but let me know!

This still makes me laugh.

Sunday, 27 March 2016

Happy Easter Again!

Happy Easter! Hope you are eating lots of delicious food with chocolate!

Saturday, 26 March 2016

Happy Easter!

Hoppy Easter!! I'm off to spend time with the family!

Friday, 25 March 2016

Home again!

Home again! It was a very short stay. I never got another fever so no antibiotics for me. Hurray! They gave me some blood, a prescription for stronger pain medication, and sent me on my way.

I'm not feeling 100% but I do have a bit more energy than before and it no longer hurts to swallow. My stomach is giving me some trouble but I have medication to help that too. I took one of the pain meds last night before bed and ended up having the most vivid dreams. Some were better than others. I woke up screaming at Isaiah at one point so I will not be taking them on a regular basis. But it did help with the pain and I did manage to sleep so I guess it was worth it on my end. Isaiah may disagree.

Now to rest and strengthen up before cycle #7.

Wednesday, 23 March 2016

Hospital, cycle #6

Well, I'm in the hospital but this time went a different route than before. Just when I had everything typed and ready for emerg, I ended up not getting my usual fever on Monday night/Tuesday AM. I was obsessively checking my temperature during the night as I wasn't sleeping due to the bone pain and was shocked when it stayed below 38. I would've sworn I had a fever as I was shivering, getting hot flashes, and feeling generally unwell. Only the thermometer stayed below 38, I thought for a bit that maybe it was broken.

However, when I went to the day unit for bloodwork and IV magnesium (the levels keep dropping on me), their thermometer showed the same numbers as mine so mine wasn't broken afterall. The magnesium took about 3 hours to go through in which time I was able to nap a bit and woke up freezing. My temperature started to climb but never got over 38.

The nurses on the day unit were not comfortable sending me home with a rising temperature so called the doctor who promptly admitted me to the VG. I spent most of yesterday sleeping and while being pumped full of saline. I thought that since I didn't get a fever, I was also going to avoid the jaw pain side-effect but it hit full force yesterday. This time with some throat pain. It means even when my nausea is under control and I am craving food, it's hard to swallow anything more than some brothy soup.

Last night, at 4am, my temperature did go up to above 38 and the nurse was about to start the 'fever protocol' (ie, take blood cultures, urine samples, x-ray, start antibiotics, etc...) until she was told that the policy here is that it has to be above 38 twice in 12 hours. Spiking once doesn't cut it. And I was fine the next time she checked and haven't had another temperature above 38 since so hopefully I'm in the clear.

The downside of 'fever watch' is that the doctors don't want me to be taking Tylenol as it tends to suppress a fever. The upside is that means that I get pain medication that actually works. My bone pain is mostly gone (possibly because of the pain meds) and all that's left is the jaw/throat pain. The pain meds mean that I've been able to eat more than a noodle at a time but it also means I'm a bit stoned all the time. I brought mindless books to read and things to do with my hospital kit and instead, I just promptly fall asleep. I'm probably also still making up for the last few nights of zero-to-little sleep.

If all goes well tonight and no fever, it looks like I'll be discharged tomorrow. My white counts are coming up nicely which my 'fever danger' zone is shrinking. Fingers crossed on a three day stay!

Monday, 21 March 2016

Side effects

Ahhhh side-effects. My hands are cramping. My bones hurt. I woke up at 2am this morning with my legs on fire and they haven't stopped burning. Not literally, although it feels like it at times. The pain is making me nauseous. All in all, cycle 6 is not going as well as I would like.

We're back in Halifax for the fever watch and I did make it to the hospital for bloodwork this morning. I almost fell asleep in the chair while I was waiting for the nurse but I made it (Isaiah drove, I'm in no condition to get behind a wheel).

Now I'm basically just waiting to see whether or not I get a fever tonight while trying to stay hydrated. It's amazing how suddenly I get dehydrated when the fever hits. I've been feeding my watermelon craving which I'm hoping will help. I've had an almost consistent watermelon craving since starting chemo. I don't know if it's the sugar or juice but I can not get enough of it. I've eaten more watermelon in the past month than I have in the past few years.  After this I'll probably never want to see another one again.

I don't have much more of an update other than to complain more about how terrible I feel and how much I want to eat watermelon. Time for another tylenol and nap.

Urghhh chemo is the worst. 

Saturday, 19 March 2016

Spoon Theory

Cycle six recovery is not going quite as smooth as cycle five. I've spent the last two days lounging around, binge-watching Elementary, but I have not been able to keep the headaches away. I don't think I've done anything really different so I don't think there is a way for me to fix it. It may just be having a different doctor do the intrathecial injection or an accumulation of the chemo meds or just something that is happening. 

I did have more energy today which I then burned up as quickly as it arrived. It wasn't enough energy to make it to the walking track as I had previously hoped but enough to clean up the house a bit and make loads of peanut butter balls.

My limited energy has me thinking about the spoon theory which I may have mentioned years ago but since it came up again in the Furiously Happy book by Jennifer Lawson, I thought I would mention it again.

The spoon theory by Christine Miserandino postulates that people with a disability, either mental or physical, often have a limited amount of energy, which she represents through spoons. Each activity a person does during the day takes a spoon and when you run out of spoons, you're pretty much done doing stuff for the day. Some days you get a handful of spoons and some days you get a bucket.

Every activity requires a spoon so if you decide to shower, that's a spoon. If you do some dishes, that's a spoon. If you make supper, that's a spoon. If you go out for coffee with a friend, that's probably three spoons because you have to get to the place, focus on the conversation, and get home.

It's a good metaphor as people without a disability often don't realize how much energy is required for a person with lupus or anxiety or cystic fibrosis to get through their day. As people without disabilities often have a limitless amount of energy and don't think twice about things like 'getting a shower' or 'cooking breakfast.' Or, if you have CF, 'walking up the stairs' or 'breathing.'

I know, before my transplant, I had to figure out which days I was going to spend a spoon on activities like showering or putting away laundry. It seems like something that should be effortless but if I spent a spoon doing those activities, it could take away from something I would want to do later. If I had pottery class in the evening, I had to make sure I did as little as possible during the day so I would have energy for the class. There was only so much energy to spread around so where to spend it is important.

It's not something that people with disabilities are actively thinking when planning out their days, if you have a chronic illness, it's basically second nature. You know that you can't exercise in the morning and expect to go on a hike in the afternoon. Most days are limited to 'one active activity a day.' Showers, meals, and cleaning are planned accordingly. It's when you try to explain the system to someone without a disability when you realize how much effort simply planning ones day can be.

Since healing after the transplant and before all this cancer nonsense, I hadn't had to think about my decisions as much in 'spoon terms' as showering and doing dishes were pretty much effortless. I had endless supplies of energy so it didn't seem to apply to me anymore.

Suddenly it's applying again. And boo to that. I'm back to having limited amount of energy as the chemotherapy is wiping me out. On these in-between days where I'm not feeling great but not in the hospital, I have to think even more about what I'm going to do with my energy. Do I spend it baking? Or should I try to exercise? Or should I clean up my art room? Even on my good days, I feel like I have a limited amount of spoons and have to figure out the best use of that energy. It's frustrating, I want all the spoons again!

Wednesday, 16 March 2016

Post-chemo, round #6.

Yesterday's chemotherapy, round #6, went as smoothly as possible. I took a lot of food with me so I wouldn't get hungry as well as books and knitting and colouring to entertain me which I ended up not touching as I simply napped most of the afternoon.

As usual, I met with the doctor when I first arrived for the 'make sure you're okay to get medication today' assessment. There was a bit of debate over whether or not my chemo dosage should be increased as my weight as increase by more than 10% since starting chemo. Everyone was trying to figure out if it was really weight gain or just water weight. I think it's a bit of both. I lost a lot of weight in Oct/Nov while they were trying to figure out what was wrong with me and then when I was in the hospital. I'm just gaining it back to my normal baseline. Add in high levels of prednisone (steroid) and insulin which 'helps me' retain water and, bam, I'm suddenly 15lb heavier than I was in Dec. In the end, the doctor decided to not change my dose as I "have a  hard enough time with the current dose."

The results of the CT scan showed  "good results" with some "lesions on the lungs that are normal with chemotherapy." I'm not sure if that means it's scar tissue on the lungs from the lymphoma or if there is still some lymphoma spots on the lungs. I also don't know whether "good results" means that the cancer is shrinking or just not growing. I didn't question him as much as I should've. Either way, good results are good results. My spinal fluid sample was also negative. Excellent all around.

I asked if there was anything that could be done to prevent my getting a fever next week and was told that no, no there is not. I will once again return to Halifax on Monday to get blood work done so they can monitor me closer and await a fever. They have no other ideas for what to do with me. 

I didn't have a reaction to any of the medication this time around and didn't panic during the intrathecal injection. No nurse tried to hold my hand or elbows or anything which really helped. The nurse stayed on the other side of the bed and assisted the doctor as is her job. I listened to my music and didn't move while the needle was in my back as is my job. This time they did the intrathecal injection in between the other chemotherapy medication which meant that I did my 'hour of laying down' while I was getting the rest of the medication. All the other times it's been at the end when everything had gone through which meant more time waiting around. This time was way better and we were actually out of there by 430pm. A long day but not as long as it could've been.

We drove home ASAP and I've been lounging around ever since to avoid headaches (so far a success) while Isaiah brings me food and water. He's good to have around sometimes.

The med for my spine. Urg. Too bad it didn't 'go missing' while we were waiting for the doctor to show up.

Tuesday, 15 March 2016

Chemotherapy #6

Chemotherapy round #6 today. Hoping to find out about my CT scan and not have a reaction to the medication.

In other news, my hair is growing back a little bit. Just a little bit but it seems to be thicker and a little bit longer. I didn't think this would happen until a month after chemo ended so I'm a bit confused and cautiously optimistic that it's actually coming back. It hasn't started curling or changed colour or anything like the doctor mentioned so I guess only time will tell if this is going to continue.

Monday, 14 March 2016

Cooking: Banana Oatmeal Chocolate Chip Cookies

I've been baking a bit over the past week. Mostly lemon squares because the geniuses that were past-Allison and past-Isaiah couldn't pass up the 1.99$ discount giant bag of lemons while grocery shopping even though no two people need 10 lemons at once. They were starting to go soft so into squares they went. And now the squares are gone.

So today I decided to get some of the frozen bananas out of the freezer and make cookies to tie me over this week. I made classic oatmeal chocolate chip cookies with the recipe from One Smart Cookie by Julie Van Rosendaal. I doubled the recipe and now we have all the cookies. It's not an exciting recipe but one that has never failed me so I though I would share if you're looking for a new Oatmeal Chocolate Chip Cookie (I've never made the raisin version because why use raisins when chocolate chips exist? Unless you're my poor aunt who can't eat chocolate.).

The dough is pretty wet.
Cookies waiting for the oven.
So many cookies! Disappearing fast!

Sunday, 13 March 2016


I've been feeling pretty good this week. The IV antibiotics are done and while I think they made me a bit more tired than usual, I haven't had any more side-effects. I've been able to push through the sleepiness and have been able to get some exercise.

It's amazing how motivated I am to exercise on the days when I'm feeling okay. As long as I'm not in any pain or feeling too congested, I'm ready to go. It's like because I know that I won't be able to go next week, I have to go now while I'm feeling good. It's basically now or not for another two weeks.

I've been going to the community center to use the track and stationary bikes. There usually isn't very many people there (unless it's a weekend morning and there is a kid's hockey game) which is nice. In some ways it's better when people are around so I feel competitive and work harder trying to keep up with them. But it's also nice when it's just me or one other person so I can relax and don't have to make that awkward eye contact every time I meet someone going in the opposite direction. After the community center, I come home, do a few weights, stretch, and call it a day.

I've been trying to do a very modified version of the "couch to 5km" that I tried last spring. I say 'very modified' because I'm trying not to bust out my knee this time plus my body doesn't have quite as much energy as last time I tried. Plus, I have to take about two weeks off in between so I don't feel like I building up anything. Usually they start with 30 or 60 seconds jog/90 second walk and then increase slowly from there.

Today I managed to do a 30 seconds jog/3 min walk alternate for 30 minutes which was pretty exciting for me. My legs were complaining at the end but at least my knee was holding up strong. It's a slow start but at least it's something and makes me feel like cancer isn't sucking everything away from me. Hopefully I'll be able to walk tomorrow, not that I'll have much walking to do on our drive to Halifax.

Thursday, 10 March 2016

Book: Furiously Happy

I recently finished the book Furiously Happy: A Funny Book About Horrible Things by Jenny Lawson. If you aren't familiar with her work, she also wrote a hilarious book called Let's Pretend This Never Happened and blogs at
"For most of my life I’ve battled depression, anxiety and a host of other disorders, but I wrote this book less as a manual on how-to-survive-mental-illness and more of a compendium on how-to-thrive-in-spite-of-your-brain-being-a-real-bastard. Some of it is very serious and some of it is very funny, but I hope you’ll find that all of it is honest, baffling and relatable in ways that may make you question your own sanity."
- Jenny Lawson,

Furiously Happy is more focused on her personal story with depression, anxiety, and other mental health complications than Let's Pretend This Never Happened which was more of a collection of funny stories about her growing up. In between all the stories that make no sense, there is a real discussion about what it's like to have mental illness or, really, any illness. I would recommend it to all.

It's an easy read but at the same time, I found it wasn't one that I could sit and read for an extended period of time. Probably because the chapters aren't particulary related to each other so it's much more a collection of short stories or essays than a book with a plot. I guess you could consider that the overarching plot is figuring out how to deal with the world while having depression or anxiety.  It's a good book to read a chapter or two before going to bed or when you have an extra 20 minutes in your day.

Tuesday, 8 March 2016

PICC line blockage

Happy International Women's Day to all!

I've been doing homey things since being home. Mom and I managed to make it skiing for a little bit Sunday night but I didn't last very long. I was more tired than I thought and while I was disappointed that I didn't last longer, it was nice to get out. The runs were quite icy which meant it took more concentration and leg power to get down the hill than usual. I was nervous if I kept skiing that I would become too tired and fall. I think the fact that I stopped before completely exhausting myself may be a sign of maturity. Or maybe just the chemo meds. Probably the meds.
Mom zooming along because it was too icy to stop.
VON has been coming in every afternoon for the IV antibiotics. Only two more days left and then maybe I'll stop having diarrhea. It hasn't been too bad with the nurses, the only problem so far has been that one of the lumens on my PICC line clogged up yesterday.

Both of them have been a bit sluggish every since getting my dye-CT scan on Friday (which I haven't heard anything about) and yesterday the purple one decided to stop working completely. Sometimes the nurses wait a day or two before recommending further action as it sometimes just unblocks itself but seeing as it wouldn't budge at all, yesterday's nurse thought I should get it checked out. I agreed with her since it had been getting progressively worse over the past few days, I thought it wasn't worth the risk of having both of them block and it turning into a greater problem.

So, last night, Isaiah and I had the great joy of sitting around the Amherst emergency department waiting for my PICC line to become unclogged. We had to wait for the evening as the problem with being in a rural area is that there aren't many nurses qualified to administer the PICC de-clogger stuff (I'm sure it has an official name). The VON nurses and Springhill hospital won't do it and only a handful of nurses in Amherst can do it. So I had to wait until one of the qualified nurses were working or else drive to the Moncton emergency which seemed like a ever larger waste of time.

Thankfully, a qualified nurse was working in Amherst emerg last night so I was able to get in. The entire process is not difficult so I'm not sure why the average RN isn't trained to do it. They could just give me the stuff and I could've done it myself at home. It's just mixing a blood thinner and pushing as much of it through the line as possible until it breaks down the blockage. I understand there are always possible complications with blood thinners and PICCs but seriously, it's 1 ml of clot-busting stuff.

Anyway, thankfully I got in right away (much to the under-the-breath-complaints of the woman waiting beside me), as it took about three hours before the stuff worked and the nurse could finally get the line flushed. But it worked! We made it home around midnight and my line is happy again. Probably until my next CT scan.

My PICC being declogged as I read my book.

Saturday, 5 March 2016


I'm home! My white count jumped up to normal levels, the rest of my blood work was okay, and I had no more fevers so they figured I was good to go. Once leaving the hospital, I slept for the drive home and most of the evening. Apparently I was exhausted.

I'm feeling better today after all that sleep. I even made it to the walking track this morning to stretch out my legs which felt good. I think that also helped my appetite because I'm eating much better today than I have since last Tuesday. The week after chemo when all the side-effects kick in and getting fevers really does a number on my body.

Even though they said I would go home on oral antibiotics, the doctors changed their mind and I'm on IV antibiotic instead. It's not that much of a difference but it does mean spending the next six afternoons waiting around for a VON nurse. It's annoying but better than being in the hospital so I'll try not to complain too much.

No results from my CT scan yesterday. The scan itself was fine. It was a bit different in that I had a dye I had to drink the night before and morning of in addition to the dye they inject during the scan. I guess the dye that I drank shows up in the digestive tract better than the injection dye so they'll be able to see if I have any cancerous lymph nodes there.

If I don't hear from anyone about it next week, I'm going to assume good news. Happy snowy day for everyone in NS! Maybe they'll be enough to ski tomorrow. *fingers crossed*

Pedaling along at the walking track.

Thursday, 3 March 2016

Hospital Stay for Cycle #5

Fever watch cycle #5 has ended as the fever arrived early Tuesday morning, right on schedule. I was up most of the night paranoid about getting a fever and then I started wondering if my paranoia would create a false fever somehow. That is what I told myself at 4am when the temperature hit above 38 degrees. But by the time 6am rolled around and my temp was still rising, I figured even if it was a result of my paranoia, I needed to get to the hospital.

At least there wasn't a giant snowstorm this time so we were able to drive to emerg where I was quickly processed and into a room. I usually only take my list of medication and the cancer card with me but this time I wrote down everything I thought they needed on a separate paper (last chemo dose, recent hospitalizations, next chemo dose, allergies, etc...) to see if that would reduce all the questions. I think it helped. I mean, I still had to see every level of doctor including a third year med student who seemed to think checking my muscle flexibility was related to my fever, but it cut down on the questions from the nurses. I'll be doing that again for the next time.

Literally playing the cancer card.
The emergency doctor was super efficient and actually listened to me. Most of them just glance at the cancer card even though it lists exactly what they should do, and do their own thing anyway but he was on the ball. I had also written what they should do on my own piece of paper so maybe reading it twice was what it took. Or maybe he is generally just a good doctor.  He saw to all of my demands. Demands like "pain medication" and "anti nauseant" after I threw up in the trash can. I have high demands.

I spent most of Tuesday in emerg waiting for a bed at the VG in a bit of a haze. I would try to read and instantly fall asleep. Or start a podcast and instantly fall asleep. Or stare at the wall and instantly fall asleep. You get the picture. But I would only sleep for 20 minutes at a time and I would wake up disappointed that it hadn't been longer. It was a weird day of very short naps. Eventually, I was transferred over to the VG by two lovey paramedics and not by zip line which would be my preferred method of travel and I think could totally be installed between the two hospitals and would save the government lots in transporting fees, I'm sure.

Yesterday, someone important actually looked at my bloodwork and noticed my low hemoglobin and ordered me immediately two units of blood. I felt much better after that and was able to stay up for most of the day and eat actual food. My body is always happier with blood and hydration.

Sweet blood. It's unbelievable how much it helps. Thank you donors!
Today hasn't been too bad. My energy level is up, my pain and nausea are both being controlled with strong medication which is wonderful for my body but is making my brain a bit fuzzy (forgive any missing words or nonsensical sentences). I napped off most of the fuzz this afternoon but there is some remaining this evening. At least I'm not in pain and hopefully it means I'll sleep okay.

I've been sleeping as well as can be expected considering I get woken up every 4 hours for vitals.  However, since as of this afternoon, I'm no longer considered neutropenic (scary low white count)  that should stop tonight. Maybe I can sleep straight through until my bloodwork at 4am.

I haven't had a fever since Tuesday morning and although my blood cultures were positive, it's the same one that that keeps popping up every other cycle and probably not from a source (like my PICC line).  The infection is a bit different this time though as it's responsive to an oral antibiotic that it was previously resistant to. Hurray! That means I should be okay to go home on an oral antibiotic as soon as the infection disease doctors agree with me. Hopefully tomorrow....?

I also have my second (since starting chemo) CT scan tomorrow morning and I'm anxious for the results already.  I know it hasn't even been done yet but I want the results now. What is happening?! Hopefully I can find out before discharge and I won't have to wait for cycle #6 to find out.