Monday, 21 December 2015

Happy Holidays!

Happy Winter Solstice! I know technically it's tomorrow so I guess, Happy Last Day of Fall!

I've actually had a relaxing few days at home, I feel much more settled, less panicked over something going wrong at any moment, and a bit more caught up on sleep.

We're back to Halifax tonight as my second round of chemo treatment starts at 9am tomorrow. I should be able to get in, get the medication, and get out in a fairly reasonable time. As I had no reaction to the last treatment, they'll be able to pump the medication into my body a bit faster than the first time.

We're also hoping to check out the Sunshine room, I'll be allowed in now as an outpatient so maybe I can get a few headscarves or ties that don't scream too much 'cancer patient.' I have a lot of toques here at home which is great but they're mostly wool which I think is going to become itchy once I loose the tiny amount of hair I have left. I was also told that the chemo meds make the head super sensitive so wool hats may not be the way to go.

After tomorrow, if all goes well, we're planning on heading to NB for the Christmas holiday to relax with family and have other people feed us for awhile.

So after today I'll be on Christmas break from the blog, probably until the new year or unless something super exciting happens.

I hope everyone has a wonderful, relaxing rest of 2015 and fantastic start to 2016!

Happy Holidays from mouse ornament!

Friday, 18 December 2015

Goodbye Hair!

I've officially lost all my hair. Well, I got it shaved off so there is still some hair but it was coming out in such large chunks that I needed it gone psychologically. There is something really bothersome about losing it in pieces that I needed the control back and to not have so much hair all over my pillow. It's still hard to believe how fast this has all happened.

I did have a bit of fun with it before today thanks to my amazing friends even though it all happened so quickly.

On Monday, we dyed it purple which was an adventure as the hospital doesn't exactly have the right equipment for dyeing hair. It was a lot of fun until I brushed it out afterward and it came falling out. 

My regular greasy hospital hair.
How we dye hair in the hospital.
Purple streaks!
Tuesday, I realized how much was actually falling out so my friend shaved part of it off and I had the half-shaved purple punk look for several days. She had quite the task using the dull hospital razor but managed to do a better job than I would've.

Punk rocker look.
Today, after washing what hair I had left and having so much fall out that I freaked out, I went to the Springhill barber and he buzzed off the rest of it. He was very nice about it, I think he felt bad as I tried not to cry, and wouldn't take my money afterward. Yay for free sympathy haircuts. I thought I was emotionally steeled to have it done but it's still a shock. Plus my head is now cold all the time. I understand now why Isaiah wears toques everywhere.

A tired blurry me. It's been an emotional few days

Enjoying home.

The last few days have been a bit of a whirlwind. It was nice to be able to relax a bit today although I did spend a lot of time unpacking all of the assorted hospital bags of random stuff we have accumulated over the past month.

The actual discharge process from the hospital seemed endless. Wednesday's resident thought he could discharge me that day but he didn't realize how much consulting with other teams he would have to do and by the end of the day, he called it quits. I also needed a PICC line before he would let me go which I really resisted as the last two have been pulled so quickly after insertion after they thought it was the source of my infections. But as I need a daily IV antibiotic, I was told it was either the PICC line with homecare or stay in the hospital until next Tuesday, I relented and they put it in.

I wasn't officially discharged on Wed night but I was able to go on an overnight pass to a friend's house. It was fantastic. I had a bath, slept in a real bed, wasn't woken up at 4am by someone taking my blood work. I really didn't want to return on Thursday but figured I should. I sat around for them to figure out the paperwork, then I had to pick up the IV medication and zoom home for my 4pm VON appointment (who didn't end up showing up until 8pm).

My daily IV antibiotic will be until Monday and then return for my second chemo session on Tuesday as an outpatient. If all goes well, I'll just go up, get the medication, and return home. I don't have very long for homecare which is nice but I must say, two days of VON care and they are way easier to work with than St. Elizabeth in Toronto. They actually provide supplies! It's so convenient.

Now that I'm actually home, I realize how physically weak I've become. This was discovered when I was walking up the stairs last night and my legs wanted to give out. Apparently not doing stairs for 6 weeks means your muscles atrophy. I had been doing okay moving around my room a lot and using the leg bike but the few days I spent in the IMCU ruined everything. It's hard to keep your muscles strong when you get lightheaded whenever standing up due to low blood pressure. It's amazing how fast you lose muscle with three days in bed. I'm obviously not as bad as after the transplant but the amount of work I'm going to have to do to get my strength back feels comparable. Except I guess this time I know more what to expect.

Being home has also hit me hard emotionally. I think I had been so focused on getting home that once I got home yesterday, the reality of what I'm going through/have gone through hit me. I guess I had been suppressing a lot of the emotional overload of 'holy shit, I have cancer' and it's coming bubbling out. I guess I had to deal with it sometime.

The other part is that I've been so closely monitored over the past 6 weeks that being on my own is a bit scary. I'm nervous every time I use the bathroom that I'll have another GI bleed or every time I have a slight ache in my chest that something is wrong and we'll have to rush back to the hospital. I'm not sure when the constant paranoia is going to end but I would like it to be over sometime soon. Although I'm not positive it'll ever go away. A bit of paranoid is probably healthy in my situation.

Despite all the emotional stuff, it's amazing to be home. Isaiah surprised me by having a tree already in the house (he got it on Monday when he was home for the weekend) which we decorated last night so I'm feeling a bit more Christmas-y. I'm also enjoying all the small luxuries of being able to drink the tap water, use fluffy towels, have a bath, cook my own food, sit quietly on the couch, reliable Internet, napping without interruption...the list could go on and on.

Thanks to everyone for all your visits, support, and messages while I was in the hospital. We really appreciate all of it.

Our tree! Pre-decorations.

Thursday, 17 December 2015


I'm home! Yay!!! After 49 days, they let me go!

I'm pretty exhausted and emotional so I'm going to wait until tomorrow to write more but I'm home and can sleep in my own bed!

Wednesday, 16 December 2015

Light at the End of the Tunnel

Everything has remained stable. Yay! My blood work is looking good, all my blood counts are trending upwards which is most excellent seeing as today is day 14 of the chemo cycle (aka, the day where I'm most vulnerable for infection).

Since everything is stable, I'm waiting on the plan to see what the doctors want to do with the antibiotics; if they can switch me to an oral medication; if VON will visit the hospital; if VON will work with my central line or if I'll need a PICC line put back in. No one really knows.

And then they have to decide what to do with my next round of chemo which is scheduled on the 23rd. As I'm just now getting stable, they may decide to hold off a few days to let my body rest or they may want to do the chemo but keep me in Halifax afterward. It's all very up in the air.

So basically, I'm waiting for them to come up with a plan. There is a new resident on today who seems determined to get me home today or tomorrow but I remain ever cautiously optimistic.

Sunday, 13 December 2015

Hair Loss.

I've been looking at wigs online ever since the revelation that there is a very high chance that my hair will fall out. There is a lot about wigs to learn as my current knowledge is zero. I barely spend much time on my own hair and now I need to learn about taking care of fake hair.

The selection online is overwhelming by the amount of selection. As someone who struggles picking out toilet paper at the grocery store due to the amount of choice, I quickly become overwhelmed. There are so many beautiful choices! Do I go long, short, medium? And then colours? Fun colours? Neutral colours? Gah!

I, my budget, eventually narrowed it down to synthetic hair vs real hair as synthetic is easier to take care of, is significantly cheaper, and lasts for about 6 months if taken care of properly which is about the span of time I'll need.

I was too overwhelmed so last week when Amy was here, she sat me down and forced me to narrow it down to a few favorites. Then we looked at the products for upkeep and became overwhelmed once again. Most of the cancer sites are not as helpful as you would think, mostly want you to give you their hair or sell you products. The other information comes from cos-play where people attach them over their actual hair which doesn't help with scalp irritation or adhesion. Thankfully, my pottery friend from Ont has a contact with someone with alopechia who was willing to answer all of my frantic questions about wig combs, caps, shampoos, and sprays...there is so much to learn.

In the end, after narrowing down to our top picks, Friday, with Amy visiting again (she is better at the non-procrastination of scary things than me), I took the plunge and bought my first wigs. Ahhhhhhh.  One short, one long. I was convinced not to wait until my hair actually falls out completely as then I would have to wait for shipping and it might be better psychologically to have something prepared nearby for when it happens. I have no idea how much I'll wear them on a day-to-day basis or how much I'll just wear a toque since it's winter but they'll be nice to have and they look so pretty online.

After Friday, I was feeling psychologically ready for when the change happened. Looking at it as a chance to wear unnaturally long hair or try new hairstyles and whatnot. I figured before it falls out, I'll cut it short and maybe colour it a fun colour so I don't have giant chunks coming out at once. However, that plan is a bit hard to do while I'm still in the hospital.

My plan was going well until Mom washed my hair this afternoon - which felt amazing as it had been about a week. However, when I was combing it out afterward, it seemed like so much more than usual fell out. And it keeps falling out more than I would expect. I don't know if it's because while in the hospital I mostly keep my hair in a ponytail during the day so more hair falls out when it's down but it seems like it won't stop dropping. It's also quite, very much, likely that I'm just watching for it and am paranoid so I'm reading into it more than I normally would. 

I though I was ready! But I also thought I had more time. The side-effect booklets said 3-6 weeks since the first dose of chemo and it's only been day 11. I'm not prepared.

But why this is freaking me out emotionally more than spending several days in the IMCU/ICU, I have no idea. Maybe it has something to do with the fact that once I lose my hair, I'm officially part of the cancer club. Or that it's a more visible sign of the change happening. While being in the IMCU/ICU was indeed scary as they worked to stabilize me, it was all a process of which I've already been. I've been on constant monitoring machines, I've been so physically weak that I've needed to use a bedpan instead of going to the washroom, I've been woken up by screaming roommates before. Not that it makes it less of an event, it was just a familiar event that I knew I endured once and could a second time around.

None of this is familiar and I think that's what makes it so terrifying. And while looking at pretty wigs online was fun, having a strands upon strands of hair fall out when I run my fingers through my hair is not enjoyable. These transition times of unknowing are always the worst and I think I'm starting a new transition time into the unknown. At least I'll have little strands of hair following along, keeping me company through the entire process. 

The next step in all of this is going to learn how to draw on eyebrows. I can barely draw a straight line for eyeliner. Once I get back to regular wifi, I have a lot of youtube videos to watch. I may end up looking very surprised a lot of the time. Or villainous. Perhaps quizzical the entire day.

Quiet weekend.

Did I just have a quiet weekend full of family visitors (ignoring all the transfusions yesterday which was still overall stable)? Or is there still time for something absolutely random to happen?

Besides having to pee all night, I slept super well last night. I think being back in my own little space without having to listen to nurses behind the curtain and no longer having fever or chills made a huge difference. The Ativan probably also helped.

There is no real news on the health side of things, my kidney levels remain a bit a high but trending downward so they're happy and just to keep the trend downward, they spent the day pumping me full of fluids while I spent the day running to the washroom.  My platlet levels were up quite a bit which isn't suprising seeing as I had the transfusion yesterday. Anything else the resident told me was lost because he woke me up from a deep sleep at 730am, blurted out all the information, left, and I went right back to sleep.

I don't know what the long term/discharge plan is, the staff this weekend seemed to be more focused on keeping everything steady and waiting for the main hematologist to return on Monday. Right now, steady is okay.

Mom and Dad were here for most of the day which was wonderful as they brought me loads of delicious food and sugary drinks.

Woohoo, quiet weekend!! *knock on wood*

Saturday, 12 December 2015

Day 44 of hospital stay: Back on 8th!

Not much happened today except for family visiting and that I'm back up on the 8th floor! Hurray! This will be another quick update as once again I'm quite sleepy but then again I'm getting yet another blood transfusion so it'll keep me up for a bit (I've lost count at this point how many I've had).
It was an ordeal to get me up to the floor.

My kidney numbers were down to acceptable (although not ideal) but the floor wouldn't take me with my arterial line in but for that, no one would pull it until my platelets improved (platelets help clotting)  I wasn't down to the level that the hematology team would start transfusion but I was low enough that the general medicine doctor didn't want his resident pulling out any lines.

So I had the transfusion which took about an hour (did you know platelets are a orange colour? Also, serious thank you to everyone who donates blood, I've used so much of it lately), the line was pulled which took about a half hour as the resident insisted he apply pressure for 20 minutes even though I didn't bleed much at all. I bleed more the day before when the nurse took out my little IV line. Clearly bleeding out is a much larger concern in general medicine.

Once that was done, I was ready to go. Except that I wasn't because the person on the 8th floor hadn't moved yet. So for about two hours, the IMCU frequently called 8A asking when the bed would be ready while the ICU called the IMCU asking when the bed would be ready. And I'm sure the post-op people or the ER was calling ICU as frequently wondering when there person could leave. Eventually, IMCU told the ICU to call the 8th floor and figure it out themselves.

That seemed to have done the trick as I was soon thereafter whisked up to the 'swing bed' on the 8th floor. It's basically the bed that they keep empty for emergency cancer patients. It must happen enough that they feel they need a bed on standby at all times. But since their other patient was indeed planning on leaving at some point during the day, they determined it was okay to have a few hours overlap. So now that other patient's room is considered the 'swing room' and I'm all settled in at the end of the hall.

It's not as nice of room as the BMT unit but compared to the ICU and IMCU, no complaints from me. I can have two visitors without them having to crawl over each other; I have space for more than one small bag; I have an actual bathroom instead of a commode; I have a door I can close. All pleasant things. The only downside is that I'm at the end of the hall so the wifi is really iffy. I guess I'll be spending the next few days reading, listening to podcasts, and colouring instead.

Friday, 11 December 2015

Hanging out in IMCU

Thanks to Amy for updating everyone yesterday! I did not throw up or pass out! Unfortunately, I didn't exactly catch up on my sleep. I'm not use to this 'share a unit with other people' business. Send me back to the private room with the space and the TV! I have standards now!

I was pretty sleepy for most yesterday but today was better, they gave me enough anti-nausea medication that has been keeping the medication side-effects at bay. Everything has been stable the past 48 hours *knock on wood* so the IMCU is ready to kick me out of their little section and precious space. However, my kidneys aren't working as strongly as it should (prob due to meds) so the hematology team wants me to spend another night under strict observation and pumped full of more fluids. There also isn't a bed available right now on the hematology floor so that may also have something to do with the lack of gusto to transfer me.

Well, my computer is about to die as the power cord has separated from the computer during the many moves and I'm about to get an ECG due to my low potassium levels (they gave me a ton all day so hoping it's up by now so I don't need to drink the terrible potassium-OJ mix) so that's all the update for today.

Exactly two weeks until Christmas! Hope to be free by then!

Thursday, 10 December 2015

The morning I gave my nurse a heart attack and so much more.

Hello....Its me...Amy. I am writing the blog for Alley today as she can't really type with all new  fun lines in and her increased shakiness from the meds.

" On Sunday afternoon, I found out that I was going to get a colonscopy to make sure that there was nothing bleeding in my bowel. If there was tumours that were bleeding in my bowel, they were going to clamp them off at that time. I drank 4 L of the horrible horrible Peg-Lyte laxative during that afternoon and and early Monday morning. It sure did work! Not much sleep was to be had that night. But the good news was that I wasn't pooping any more blood even with the Peg-Lyte. I got down to the procedure room Monday morning and than the doctor changed his mind once he realized that my white count dropped down over half and was scary low. The risk of me getting an infection was too high for him to do the colonscopy. I was not pleased to say the least that I drank that terrible oily artificial drink for nothing. I went back up to my room, and had a good day eating and visiting, minus all the pooping.

Monday night was a terrible night. I developed a fever that they couldn't get down. My blood pressure also dropped. With alot of frantic visits from doctors, and nurses, they decided I had an infection. They did lots and lots of blood work, and started iv antibiotics. I was taken down to the step down unit so that I could be monitored closer.

Tuesday, I was basically seen by every doctor known to man. I am still on the iv antibiotics. The blood cultures shown that it was the same infection that I had a few weeks ago, so hard to say if it is still there from a few weeks ago or a new infection.

Wednesday am, I woke up feeling super dizzy. I sat up briefly to pee and than I woke up with 10 people standing around me with an oxygen mask on my face. They told me that I passed out, and they called a code. My blood pressure had majorly dropped and I passed out. I got moved asap to the ICU where they started me on lots of fluids and blood pressure meds. My blood pressure went back up with the meds. They started an arterial line in my wrist to monitor my blood pressure. I basically slept on and off all day. Later in the afternoon, they took out my picc line as they didn't want to risk that it was the infection source and put in a new fun central line in my throat. It hurt like crazy going in.
They were able to stop my blood pressure meds as well and it has been stable. My hemoglobin dropped to a new low for me, 62, so I also got blood. All the fluid that they pumped into me seemed to have gone a bit into my lungs so I got some lasix to pee it out.

Today, I had a better day overall. My chest was less congested today. My blood pressure is also stable off the medications. I so far have not had a temperature since yesterday afternoon. I was able to sit up in a chair for 5 hours and ate a bit of lunch. Later this afternoon, the iv meds took their toll on my stomach and I have been trying not to throw up ever since, with the help of some gravol and zofran. I was moved this afternoon back to a step-down unit.

Now is just a waiting game to make sure the iv meds kill off the infection, and my white count goes up a bit. As well, my kidneys are a bit slow working today due to my blood pressure drop, so they are hoping those will bounce back fully soon.

The plan for me tonight is to try to catch up on my sleep, not throw up and not pass out. All solid goals. "

Tuesday, 8 December 2015


In an unexpected twist of events, I'm now in the IMCU in the VG. I had a fever last night and got no sleep as the fever turned into an infection. They couldn't monitor me closely on the floor so down I've gone. I've spent the day dozing on and off while dealing with the rotating door of doctors and nurses.

I'll write more when I'm not quite so tired.

Sunday, 6 December 2015

Christmas cards!

There has been a lot of medication information recently so here is something non-medical. Last weekend, Mom brought up Christmas cards that I had already made so I've been filling them out on and off for the past week and since I made them so long ago, I've forgotten how most of them look. Usually I spend time matching people to the card I think they would most appreciate - or more realistically, which one wasn't made from a card they sent me last year - but this year it was whatever card was on top of the pile. It will be a surprise for all.

But is a sample of the ones that I made over the past year along with some of the fun envelopes. It's a fun hospital distraction.

Cards in envelopes!

Saturday, 5 December 2015

Surprise scope!

This morning the GI and hematology doctors stopped by to inform me that my hemoglobin had crashed out overnight so besides giving me 2 units of blood, they wanted to figure out the problem ASAP instead of waiting until Monday for the gastro scope. As I had eaten breakfast by the time they told me, it was scheduled for the afternoon. Surprise!

The advantage of the surprise scope was that I didn't have that much time to freak out beforehand. I hung out with a friend in the morning and then spent the hour before the scope stress-writing Christmas cards to avoid a panic attack.

I didn't really start panicking until they brought the machine into the room and started setting everything up. Once the freezing spray went in, I was starting to freak out a bit but then the GI doctor (who had much better bedside manners than the one last week) started singing Les Mis while he was setting up which was fairly distracting to my panicking. He had also taken my concerns about the sedation very seriously and they had been charted from last weekend's disaster so he wasn't about to go light-weight with me. 

In the end, the scope went as well as possible. I was solidly knocked out and woke up at the end when everyone was cleaning up. Exactly how it should be.

The news from the scope is not super stellar. The doctor was able to locate and clamp off some of the mass that was oozing blood. However, it was not bleeding very much so he isn't confident that it has been responsible for all the blood I've been pooping. So, they're talking about a potential colonoscopy on Monday or Tuesday. They mentioned all this while I was still fairly sedated so I'm not 100% sure I have all the correct information. I was told he'll be back in the morning to discuss more with me about the scope and the plan from here. Unfortunately, after all the colonoscopy talk over a month ago, it looks like it may happen after all. I thought I managed to escape at least one scope!

I have a bit of sedation hangover but I've felt physically okay after sleeping off most of the medication. My throat is feeling okay and I managed to eat some soup and rolls for supper so I'm feeling pretty solid. I'm sure I'll sleep well tonight though. I'm actually glad they did the scope today as it means they have more information and can make plans sooner rather than waiting until Monday. Anything to speed up the process of maybe going home.

More pooping blood.

I started bleeding again this afternoon. Ahhhhhhh. Fuuuuuckkkkk. Yes, this calls for swearing. More bloody poop. Anytime the 'd' word is mentioned my body seems to rebel. This morning the doctor had said 'tentative discharge' for today or tomorrow and here I am once again, like last weekend, pooping out blood.

One theory as to why I'm bleeding again is that the high dosage of oral prednisone over the past three days has irritated the mass causing it to bleed again. The second theory is that as the mass was healing, it exposed new blood vessels which have started to bleed. The third theory is that when I was taken off the panto drip (the IV medication that suppresses stomach acid and helps the lining) and put on the oral version, it wasn't strong enough to keep the bleed at bay. There is a fourth theory, my theory, where my body just hates me and never wants to go home for some unknown reason.

My prednisone dose has been switched to be delivered as an IV for the next two days (which is the would end of my 5 day course anyway) to help support theory #1. I'm also back on the panto drip and a scope is scheduled for Monday so they can actually know what is happening. I stressed strongly to the doctor about my need for sedation and apparently it was already charted from last week's scope so it should go better this time around. I think the doctors will believe me this time around. Until then I get to sit tight and spend yet another weekend trying not to poop out any more blood.

Friday, 4 December 2015

The chemotherapy information dump.

Quick recap:

Since the GI bleeds and the scope, the doctors determined that the mass in my stomach wasn't an ulcer but was rather a 'large mass.' Even though the mass didn't show up on the PET scan, the doctors all felt that it was part of the PTLD but slightly more aggressive. I was given some long winded explanation as to why the mass didn't show up on the scan by the hematologist and the GI team that I didn't really understand but I'm willing to take their word for it.

As a result of the GI bleeds and the new tissue development, the hematologist decided that I needed to be moved up to the more aggressive chemotherapy along with the immunotherapy that I was going to be initially getting.

I was moved to the hematology wing of the VG on Tuesday and had my first dose of chemotherapy on Wednesday. I'm feeling pretty good, no nausea or anything else so far.

Recap complete.

The information dump:

I'll be getting an infusion of chemotherapy for one day every three weeks for 8 cycles. I learned that a 'cycle' just means the one day infusion and then the following three week period. They call it a cycle because at the 14 day mark after the infusion is when the white counts and plasma are most likely to bottom out and that tends to be when people need plasma transfusions or extra white count boosters. It's when I'm most likely to get an infection so I'll have to be extra careful around those times. This will all be done as an outpatient here at the VG.

For the actual medication, I'm getting what they call the R-CHOP therapy. Each letter stands for one of the medications: Rituximab, Cyclephosphamide (C-drug), Doxorubicin (D-drug), Vincristine (V-drug) and Prednisone. I realize that doesn't spell R-CHOP, I assume there are multiple names for the 'H' and 'O' medications.

The rituximab causes very few side effects, they pumped me full of benedryl before the transfusion which lasted for 4 hours and I didn't have any of the itchiness or chills that sometimes happens.

The other three medications are the terrifying ones. Together they all cause nausea, vomiting, diarrhea, hair loss, infertility, and then each medication has it's own special cocktail of side-effects.

C-drug has an immediate side-effect of bleeding if the medication sits for too long in the bladder as it irritates it or something. They pumped me full of IV fluids to make me pee lots which was great for this time but for the treatments as an outpatient, I'll have to be really careful to stay super hydrated afterward.

D-drug is pink coloured and is injected right into the PICC line which is nice as it takes 5 minutes. It has a fun side-effect of turning the urine pink (as though I had eaten a lot of beets) and an equally fun side-effect of causing heart disease. It is the reason I had the MUGA test on Wednesday before the injection to make sure that my heart could handle the it. Otherwise they reduce the dosage. But my heart was fine so full dosage for me. D-drug can cause trouble with the heart later on as it affects the actual heart muscle and can reduce how much blood it pumps out so they often repeat the MUGA scan over the course of the treatment cycles.

The V-drug seems to have more minimal immediate side-effects. The main one is muscle weakness and numbness or pain in the hands and feet.

Lastly, prednisone which I've been on since the transplant but at 15mg a day. I am now on 100mg a day for 5 days after the transfusions. For those five days, it's going to make my sugars go a bit crazy and can cause some insomnia along with the regular hair growth and bone density loss that comes with all steroids. 

On top of the chemo medications, they still have me on the white count boosters as well as a new medication for 5 days called Allopurinol which removes all the uric acid from the dead lymphoma cells. Apparently when the lymphoma cells die, they explode with a burst of uric acid which can cause gout and other terrible things. This medication should stop that from happening. 

Other thoughts: 

It's amazing how fast this has all happened. I came into the hospital 6 weeks ago with low hemaglobin and decreased lung function and suddenly I'm a cancer patient looking up wigs on etsy. I still feel overwhelmed with the rapid changes and new information but I'm not as scared or freaked out as I was when I was in the IMCU. There is a solid plan in place that the doctors here and in Toronto have all signed off on. My medical team is amazing and is in contact with each other all the time which is very reassuring.

Everyone who works on this unit (bone marrow transplant (BMT), don't worry, I don't need a BMT, I'm only here because there was no room down the hall for me which turned out to be a bonus, it's a fantastic unit) keeps saying how well I'm emotionally handling everything. They haven't heard all my ranting to Isaiah but to be honest, after the initial shock and freak out, overall this not as scary as lung failure. Don't get me wrong, it's no small thing. Cancer is a terrible disease, but it's a disease that has a potential to be cured. These medications, while they may make me feel temporarily terrible, can work, and get rid of the cancer.

Whereas, lung failure has no cure. I mean, yes, I had a transplant which did fix my failing CF lungs. But once/if I get rejection from my new lungs or start having lung failure, I'm out of options. And for many people with CF, a lung transplant isn't even an option so when their lungs fail there is no plan B. There is never any hope of getting better with lung failure. It's a long downhill slog that you try to prevent for as long as possible until you die. Cancer isn't like that. Cancer has a chance of being removed from the body. Of course there are some cancers that none of the medical system's current medications can treat but the majority have some sort of treatment plan. Cancer has hope at the end.

...that was a bit more of a depressing ending than what I was planning on, so here are a few fun facts that I've learned while having chemotherapy:

1) For 48 hours after chemotherapy, a persons sweat and saliva are toxic for those around them. Clothing and bedding should be washed separately after the 48 hours to avoid spreading the toxins. Also, no make out sessions with people unless you want them to get some chemo toxins.

2) Shopping for wigs is overwhelming because there are many beautiful choices. There is an organization here that will provide wigs once hair starts falling out but I've ventured onto websites and now I'm dreaming of all the fun hairstyles I can have. Long blue hair? Short spiky hair? Sensible cute bob? Although to be honest, I'll probably just wear a lot of toques and scarves if/when my hair falls out. 5% of people don't have hair loss...fingers crossed!

3) I'm not allowed to shower while I'm having chemo. Not just while I'm here at the VG (because no one is allowed to shower here) but while I'm home as well. Even though I've been immunocompromised from the transplant medications, the chemo meds cause a person to be more likely to catch any bacteria or fungus in the water supply that is aerosolized during showers. I'm allowed to bathe but no long soaks. There go my plans of weekly sauna sessions.

4) I really hate motivational posters. This isn't something particularly new but has been reinforced while staring at the rainbow painting in my room that is ruined by the terrible blurb underneath that says how the storm symbolizes the cancer and then the rainbow is the need for a bone marrow transplant and the umbrella is the protective goes on and on. I'm still not sure how that would make anyone feel better who was having a BMT. Just put up pretty pictures and let people make their own meaning. Or maybe they'll just think 'that's a pretty picture' and that's okay.

Well, that's more than enough information for anyone to read in one sitting so I'm ending this now. Happy Friday!

Thursday, 3 December 2015

Another quick update.

I know I said I would explain more about the chemo and treatments today but I've been swarmed with visitors all day (a good thing, no complaints!) so haven't had a chance to write it all out. And now I'm going to eat chips and read my book so perhaps tomorrow.

Just a quick update though, I'm still feeling great. I've stopped pooping blood! And I didn't have any blood in my urine which is one of the most common immediate side-effects from the chemo medication. It's caused by one of the chemo meds hurting the bladder if it sits around for too long. As a result, they pumped me full of saline to make sure that I was well hydrated and I've been peeing a lot the past two days. And it worked, no blood! I'm also not feeling any nausea (probably thanks to the anti-nausea meds) and my appetite is still excellent.

The only real side-effect that I'm getting is that my blood sugars are jumping through the roof since my steroid levels have quadrupled. It's being heavily monitored but it's a bit frustrating as it means that I'm not absorbing all the calories from all the chips I'm eating when my sugars are high. And since I've lost so much weight, I really need those calories.

The discharge plan is still up in the air. I saw two doctors today and got three different potential discharge dates of tomorrow, Sat, or Monday. So I'm optimistic about Monday and anything earlier would be heavenly.

That's my 5 minute update for today at 1030pm after spending a full day playing games with friends and family. For those wondering if I'm super bored by now, no, I'm surprisingly not. I'm anxious to get home but while I'm here, when I don't have visitors, I seem to always find something to read or watch or colour or friends to text.

Wednesday, 2 December 2015

First round of chemo done.

I'm still a bit out of it from the Benedryl but I thought I would do a quick update as I know many people are wondering what's been happening. I hope this makes sense. My mind is a bit hazy.

I was moved over to the VG yesterday afternoon and after some confusion with the rooms, I was sent to the bone marrow transplant ward (BMT) which is way nicer than the general hematology rooms. There are more staff and everything is super quiet. It's been pretty good.

Nothing eventful happened yesterday, just all the standard admitting paperwork, questions, and confusion.

Things got moving today. I had a MUGA scan early afternoon to determine if my heart would handle the chemo drugs. The test involved being injected with some radioactive crap and then laying under a scanner for 20 minutes. It was not hard. Turns out my heart is working just fine so they were able to give me the full amount of one of the medications.

After the MUGA scan, they started my chemo treatment. It started with a solid dose of Benadryl which made me both jittery and sleepy at the same time. Not a pleasant combination. The nurse then ran the Rituximab (the med that I was initially going to just be getting) very slowly to make sure I didn't react, I didn't. Eventually the sleepiness of the Benadryl won over the jitteriness and I slept for a few hours, waking up every half hour when my vitals needed to be checked.

After the Rituximab, I was given the three actual chemo meds. They didn't take as long as the Rituximab which was nice. One was pink and injected directly, the other two were a longer infusion but ran through pretty quick.

I'll explain more about everything tomorrow when I'm feeling less foggy but just wanted to let everyone know that I had my first dose of chemo and I'm feeling okay right now. They're pretty intense about preemptively giving me lots of anti-nausea meds which is excellent. The last thing I need right now is to be throwing up.