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!

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.

Boo.

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.

Homeeeeee!

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!

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 23^rd. 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.

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*

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.

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!

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. "

IMCU

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.

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.

Santa!

Cards in envelopes!

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.

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 care..it 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!

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.

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.

Day 32 of hospital stay: Pooping Blood Edition.

Well, I'm still in the hospital. In fact, things have taken a turn for the worse over the weekend. I've explained the series of unfortunate events so many times to every doctor in the hospital that I should be able to get this out without any problems. But this is going to be a long post. It's been a busy three days.

After very optimistically preparing that I would be out of here today (Monday) and being pumped to go home, on Sat afternoon, I walked from the chair to the bed and felt like I was going to pass out and vomit. I was given some IV Gravol which knocked me out for a good three hours but made me feel better when I woke up. I devoured some pasta and then went to the washroom. That's when the blood started.

The first time, I called in the nurse and she determined it wasn't enough to panic but because it was me, she called the on-call doctor to keep her informed. I still felt relatively okay until I went to the washroom about 45 minutes later and pooped out all the blood. Everyone panicked. The on-call doctor came in to the hospital immediately (same one that had to come in last weekend for my fever). The GI and hematology teams were also summoned and came in for a consult. I kept pooping blood and the doctors kept consulting. When I say pooping blood, I don't mean some streaks of blood in my stool, it's just a mass of bloody clots. It's disgusting looking but all the nurses need to see it and the GI team want a description of it all the time. Hospitals = talking about poop.

Around 11pm, I was moved to the IMCU (intermediate care unit) as GI wanted to do a stomach scope first thing Sunday morning and couldn't do it on the general admittance floor. They also wanted to keep a closer eye on me in case I started to decline more. Isaiah had to come back to the hospital to pack up and take back all the stuff I had accumulated over the past month. Since I have no fridge in the IMCU, our friend's house now looks like a mini hospital room with little cups of juice and slices of cheese. 

My hemoglobin was unsurprisingly low which meant another transfusion but because they also needed to run stuff to try to slow down the bleeding, they decided to put in another IV. It took 4 nurses, one anesthesiologist, 10 needles, and until 2 am to get in the second IV. My veins weren't great to start and they've been destroyed with them drawing blood every day and trying for IV sites. It was terrible and painful. I can only stay so positive and find the humor in my shitty veins for so long. After about the 6th attempt, I was starting to lose my mind.

Sunday morning, the GI team did the stomach scope to investigate and found a mass of tissue that was oozing blood. They felt it was too dangerous to take a biopsy as it might've increased the bleeding so they left everything as it was. The scope was the worst experience I've had in a long time. I told them upfront that 1) I both need more sedation than they think as my body has become fairly resistant and 2) I have panic attacks around scopes so a bit extra would be advisable.

They didn't listen to me and I was awake and panicked the entire time and for a good half hour afterward. The nurse was ever so helpful with her repeatedly telling me to 'try to catch my breath' and 'calm down, it's okay.' I did not like that nurse. Especially when she tried to rub my back as comfort. I'm not big on the touching and having a random person rubbing my back made things much worse. Except I couldn't say anything as I had a tube down my throat. It was so awful that just thinking about needing another scope in a few weeks is causing me to start freaking out.

I did manage to sleep for a bit after the scope and for the rest of Sunday, I sat around waiting for doctors who never showed up. I saw a few residents but they weren't very helpful in telling me what was planned. Except that every single one of them said that I couldn't have any food and only sips of water. By Sunday night, having not eaten for 24 hours, I was a mess. I don't do well on no food and then add on some pooping blood and uncertainty about the future and I'm a wreck. I played a lot of Nintendo to distract myself.

The GI team consulted with general surgery late last night which meant I got a visit from a general surgery doctor at 4am who told me that the only thing general surgery could offer me was to remove my stomach. It was a great thing to hear at 4 am when I had little sleep and no food. I kept asking what reasonable things they could do as no one was taking out my stomach over a bleed. I mentioned clamping the area or a spray and he kept saying that wasn't his area, all he did was remove stomachs when it was worse case scenario.

I wanted to ask him why he even showed up if he wasn't going to be helpful but I was too busy picturing my stomach being taken out. He did follow it up that I wasn't anywhere near the point of needing their services and then left  me to speculate at 4am what would need to happen for them to remove my stomach. Needless to say, I didn't get much sleep after that and may have called Isaiah while in the midst of a panic attack. Moving down to the IMCU has not been good for my brain.

[Advice to doctors: don't wake up patients at 4am to say that the only thing you can do is remove an organ when the person doesn't need that organ removed. Just save it for the morning, or don't show up. You aren't being helpful in any way. You are actually making things worse.]

I finally got some answers today as well as a new PICC line. No more poking for blood or IVs! The answers were not what I wanted but at least I know what's going on. The mass in my stomach is not an ulcer and is being classified as a 'mass of tissue.' Everyone (hematology, GI, respiratory, and floor doctors) thinks it's part of the PTLD even though it didn't show up on my CT or PET scan. They say that because it's upper GI, the scans have a harder time picking them up. The hematologist kept calling it a 'large cell lymphoma' instead of PTLD, I'm exactly sure how that is different but it's made them want to start treatment tomorrow or Wednesday.

The plan: tomorrow I'll be moved to the horrid VG hospital (horrid only because of the actual building, I'm sure the staff are fine) to the hematology wing where they'll go over all the treatment stuff and I'll sign a million forms saying I understand the side effects. Because of this new mass and bleeding, they've decided they need to be more aggressive so I'll be on full blown chemo as well as the Rituximab. I'll have the first dose tomorrow or Wednesday and then it'll be once every three weeks for a period of time (the dr didn't say). The rest of the treatments should be done as an outpatient. They will just keep me admitted at the VG long enough for the bleeding to stop and everything to be stable.

So that's the latest. I know everyone wants to know how I'm feeling and I honestly have no idea. My feelings having been changing all the time. This second, I just want to start treatment to get this over with so I can go home and move on. I'm sure at 2am I'll be feeling much more hopeless as that seems to be my pattern. And then when I'm talking to someone, I'll be able to joke about the entire thing. My emotions are a bit all over the place. It's all very overwhelming and the fact that I'm just now allowed liquids is not helping my ability to cope. I really don't do well with no food. I'm told that I should be able to have solid foods tomorrow as long as the bleeding doesn't get worse. I'm ready to tackle a nurse for food so they better give me something soon.

Day 30 of hospital stay.

Let me goooooo. Let me gooooo. Monday is the new potential release date and if they don't let me go, I may start singing at the nurses desk until they get annoyed enough to kick me out.

Everything is now in the hands of the infectious diseases doctors who are being annoyingly cautious and want the official negative report from my last blood culture. When they take a culture, they want it to be incubated for five days before they officially declare that it's negative (of course, every day that nothing grows, it's negative so it's fairly safe to assume that if nothing is there on day 2, nothing will show up on day 5). Once that happens, they will switch me from IV antibiotics to oral and then I can go home.

At first I was told they wanted to wait five days from my Sunday cultures, then it turned into five days from my PICC line culture when they pulled it on Monday. Then it turned into five days from my Wednesday culture. They took another culture on Thursday but I'm hoping that since all of the cultures have been negative since Sunday, they won't feel it necessary to wait for the Thursday one.

The infection is what is keeping me in here but in the interim, I had my PET scan. It happened over at the VG which meant a fun transport ride over and back in the ambulance. For the scan, they injected me with the radioactive glucose solution and then I had to wait an hour for it to get into my system. Unlike what the Internet said, I didn't have to drink 2 liters of water during that hour. It's shocking that the Internet lied to me. The scan itself took about 20 minutes in which I fell asleep. It was not very stressful.

The results from the scan were 'nothing unexpected and no surprises' according to the doctors. It all looked the same as the CT scan which is good news. No surprises is a good thing in my life right now.

So my first infusion is tentatively booked for Dec 10th providing I'm off the antibiotics and nothing else happens. It seems far away but really it's only a week and half.

I also managed to see gynecology since I'm waiting around. They returned from wherever they had disappeared. After all the waiting for them, they've decided against the IUD. Well, more the resident said she wasn't convinced that the argument for having it was greater than the risks so if I wasn't set on it, they weren't going to push me to get it. I jumped on that and said not to put it in. My hemoglobin has been fairly stable and the resident said if I get a fever with the transfusions than the first thing the doctors will want to do is remove any source of infection. Which would be the IUD. I really don't want to go through the pain of having it put in only to have it pulled in a month. Let's reduce as many things as possible that has side-effects as I seem to catch them all.

That's all that's happened the past few days. Hopefully this is my last weekend hanging out here at the hospital. My thumb IV blew Friday morning at 1 am so now I have one in the back of my wrist which is no less painful but less awkward when I want to do anything, like text or wash my hands.

One year post-transplant!!!

It's my one year lungiversary!!!

I keep sitting here trying to write something profound about today, to reflect meaningfully on the past year and marvel about how much my life has changed. It's changed in so many ways that the list is endless. To start, I'm alive. I'm able to breathe on my own. I'm able to walk for blocks without getting short of breath. I'm able to laugh without coughing. I'm able to talk without wheezing. I could go on for hours.

I'm really struggling to put into words what the one year mark means to me. Thanks to a transplant donor and their family, I was alive for the past year and experienced so much. I can't properly convey the gratitude I feel toward my donor and the transplant team for saving my life a year ago. Not just enhancing my life as I thought it might but saving my life.

There is no doubt that I would be dead without the transplant. I was so ill and my body was shutting down as my lungs were failing. There was no extra time for me to think about the decision. If I hadn't had the transplant a year ago, I would've been put on a ventilator which could've prolonged my life for some period of time but with any real quality of life.

Not that everything has been all roses the past year, there is no denying it was rough. I had a hard start with so many setbacks. It seemed like I would never feel back to feeling normal and capable. But after many months and perseverance, I seemed to scratch my way back to how I wanted to feel and it was incredible.

Even now, with everything that is happening with PTLD, I'm a million times better physically than I was before the transplant. My emotional side is a bit battered with the new setbacks but I'll get through. Because if it wasn't for the transplant, I wouldn't be able to be complaining about a month-long hospital stay. It's a really weird feeling to both be celebrating my transplant lungs and cursing them for giving me cancer.

I have a new set of challenges to overcome. The future seems as uncertain today as it did a year ago. All I can do is take it one day at a time which is a cliche but a cliche that has worked for me so I'll keep saying it.

One year ago today, I was told I was getting a transplant.

I never thought that I would be one to get hung up on anniversary dates but as my one year mark approaches, I find that I'm noticing the days and celebrating as each one passes. It was a year ago today I was in the hospital with a pulmonary embolism, rapidly declining lung function, and barely had energy to walk to the bathroom, 5 feet from the bed. I was told, a year ago today, that I was getting my lung transplant in the morning. It didn't happen for another two days but this was the day when the news was broken.

I was at St. Micheal's hospital when two nurses came into my room while I was using the CPAP (continuous positive airway pressure), the only thing keeping me breathing comfortably, to tell me that they just received a call from the Toronto General Hospital (TGH) that after waiting for 13 months, there were lungs for me and that I was to be moved over to TGH for my double lung transplant the next morning. The nurses excitedly dumped this information on me and then stared, waiting for a reaction.

I kept waiting for myself to feel relief or excitement but instead I just felt tired and doubt that it would actually happen. I was so mentally prepared for it to be a false call (as so many people get at least one false call) that I figured it couldn't actually be happening. The nurses seemed to be waiting for a more external reaction than my 'that's great, yay.'

They kept staring at me as thought they were waiting to comfort me when I broke into tears of joy or started screaming or something. Then they kept asking if I was going to call my family. As though I had been waiting for hours before breaking the news to them. I replied that I was going to wait until I felt energetic enough to be disconnect from the CPAP long enough to chat (it's really hard to talk while connected) and once I processed my shock. After realizing they weren't going to get the reaction they wanted and that I wasn't going to call people with them standing there, they left. It was all very strange.

Yes, I called my family after that. And yes, I was pleased/in shock with the news. But I didn't have the energy for a big emotional outburst. I was struggling to breathe and my body was shutting down. It's not exactly like I could do cartwheels of celebration in the hallway.

To be honest, it's best that I didn't get super pumped about the process because the next day was a very long, scary wait for me and the family. Mostly for the family as I was out of it for the majority of the day.

And here I am, one year later sitting in the hospital. I didn't know what to imagine of my life one year post-transplant but I never pictured that this would be this. Waiting for my PET scan tomorrow to see how much the cancer has spread. I pictured being finally given the okay to return to work or having succeeded in running 5K or prepping everything for winter.

And yet, would I do it all again if given the choice? Yes. I would be dead if I hadn't had the transplant last year and while I may complain (a lot) about being stuck here in the hospital, I prefer this to death. There is nothing that really puts your complaints in perspective than 'well, you could be dead.'
I can't say that my entire post-transplant year was wonderful. There were some hard weeks/months but there were some wonderful moments inside those hard weeks/months.

I'm sure I'll have more to say as I reflect on the past year and how much things have changed from two years ago. Even though I'm in the hospital, I'm not on oxygen, don't require physiotherapy, and only have two aerosol masks. It's a huge change. One that would be even better if they let me go home in the next few days. 

Day eternal of hospital stay: It feels like I'm never leaving.

I've had what everyone keeps calling a 'blip in the road' but it feels a bit more like a giant pothole in the road to me than a blip.

To backtrack, I woke up on Sat with a fever over 38 degrees. Before this, all my fevers have been in the 37 range which caused concern but not outright panic. A fever over 38 makes everyone freak out. They gave me some tylenol and then immediately started me on a broad spectrum antibiotic to combat whatever infection was in my body. And then a team of nurses descended upon me for testing. They drew blood for every possible virus, got samples from everywhere else, and drew more blood samples.

I felt light headed in the morning but after a few hours and a nap, the fever and lightheadedness went away. I was also visited by the on-call doctors from the floor, infectious diseases, and respiratory who all asked the same questions of, was I sure I didn't have an open wound somewhere? Was nothing hurting? Lungs? Heart? Urinating? Bleeding? Bloody stools? They aren't black? You sure? No pain anywhere? A giant rash, perhaps? Itchy? Anything? You sure? Really sure? What's wrong with you!?

Me: I feel ok, only a bit light headed and sleepy!! Ahhhh!!

Nothing really happened on Sunday (yesterday), the doctors returned with their line of questioning and continued with the IV antibiotics. Other than it giving me some diarrhea, I was feeling much better overall.

Today, I'm feeling ok physically but am super frustrated emotionally about this 'blip'.

Gloomy day for my gloomy mood.

This all seems like a pretty big setback as now hematology doesn't want anything to do with me until this is all settled down. The won't do the PET scan right now in case the infection is causing any inflammation in my body which would show up on the scan and could result in false positives. And they also refuse to give me the medication while I'm on an antibiotic for an infection so I'll have to wait this out. 

The good news is that they're pretty sure they determined the site of the infection. As they had drawn blood work to check for infection from my PICC and a secondary site and only my PICC site returned positive, it was clear the infection was somewhere in my PICC line. Everyone felt strongly that the PICC needed to be taken out despite my objections of 'but it's super convenient.' I know it's a scary place to have an infection as the line leads directly to the heart but I don't want to be poked anymore *whinny voice*.

The nurse then had to put in an IV (it took three tries) and now I'll have be poked every time they want blood work (which is all the time). My veins are tiny and scarred and are not prepared for this. If everything remains stable in the next 48 hours, they'll reassess if they should try to put another one back in. It's possible they'll determine that since I'm not on a ton of IV stuff (even though my current antibiotic is every 6 hours), that I can get by with just IV sites until discharge. In my opinion, it would be easier to get a PICC line back in for my cancer treatments though but I'm not sure if they'll want to risk another infection just for that. And honestly, I'm running out of good PICC line sites.

The nurse that pulled out the PICC was new to the floor and undergoing orientation so was super nervous about it. She took it out so slowly, I could feel the tubing moving through my veins. Literally, not like some pop song, I could actually feel it moving through my body one inch at a time. It didn't hurt, it's just a very strange feeling. They sent the last three inches of the line to the lab to be tested to see if they were right about where the infection came from.

I'm so frustrated. I want to go home. This is going to keep me in here for at least another three or four days. I know that really doesn't seem like a lot but it feels a bit every day like the room is getting smaller. I was hoping to get back to Springhill for the Christmas parade on Thursday. Somehow, they're still allowed to throw candy from floats there and I was prepared to take down the children for it. This hospital stay has already taken me away from my Halloween candy (it's still in a box at home), I don't want it to take away my Christmas parade candy too!

The best location the nurse could find.

Q&A: Everything I know about PTLD in one post.

Since all of this has been happening relativity fast and I've been thrown a lot of information, I thought it would be helpful for me (and you) to put everything in one post to try and sort out everything.

Let's go through the conversations I've been having with people: 

You have what? What is post-transplant lymphoproliferative disorder (PTLD)? 

Post-transplant lymphoproliferative disorder is a type of non-hodgkin lymphoma most often developed through the Epstein-Barr virus (EBV). The definition on Wikipedia says it's 'a b-cell proliferation due to therapeutic immunosuppression after organ transplantation.' Basically, it behaves like an aggressive lymphoma (blood cell tumors that develop from lymphatic cells) and is one of the most serious complications - the other being rejection - for people with organ transplants. With lymphoproliferative disorders, the lymphocytes (a type of white blood cell) are over-produced or act abnormally.

But what is EBV and how did you get it?

The Epstein-Barr virus (EBV) is one of the most common viruses in the world. Most people get it as children and it transmits as a mild, brief childhood illness with fatigue and fever. In teenagers and adults, it often leads to mono. After contact with the virus, it becomes inactive in the body and for people with normal immune symptoms, that is the end of the story.

I most likely got EBV through my lungs. Pre-transplant, I was EBV- and they warned me that if I was given lungs that were EBV+, there was a 5-10% chance that I could get PTLD post-transplant as I wouldn't have any antibodies in my system to fight off the virus. I didn't care about the information at the time as 1) I was not even listed for a transplant at the time and 2) 5-10% chance seemed fairly small versus 100% dying without a transplant.

It's possible that I picked it up somewhere since the transplant but seeing as I haven't been making out with strangers and have been fairly germaphobic, I think the most likely answer is that it was already in my lungs. It wouldn't have been the doctor's top priority at the time for me to get EBV- lungs. I was dying and I was getting the lungs whether they had EBV in them or not.

Ok, so you have EBV but how come it turned into a cancer?

Without getting too technical into types of B and T cells, the EBV infects B-cell lymphocytes which then proliferate. Normally T-cells would shut that down but as my immunosuppressants decrease my T-cells to prevent them from rejecting my lungs, it also means that the infected B-cells can proliferate happily. For me, this happened in the liver, spleen, and possibly the lungs.  

Is this common? 

No, not really. 1-2% of people who get organ transplants develop PTLD. I was given a slightly higher percentage rate as I was EBV- before the transplant, therefore had no antibodies to fight off the infection if/once I got EBV+ lungs.

The Halifax CF team hasn't had anyone with PTLD before but the hematology team has had some patients with it who have been post-liver and bone marrow transplant. The treatment is basically the same but slightly different as lung transplant patients tend to be more complicated.

What's the treatment plan? 

The first step of the treatment was to cut back my immunosuppressants to see if that would increase my T-cells enough to fight off the cancerous B-cells. They could only do this up to a certain point as cutting back all of the medication would put me at a huge risk for rejection and once you go to rejection, you don't go un-rejected. I was told there was a 50-50 chance that that would be successful and, unfortunately, it was not.

The second step is immunotherapy which is an infusion of Rituximab (if you look up this medication, it was originally developed for rheumatoid arthritis treatment but is now being used to treat some lymphomas among other things). I'll get the treatment as an outpatient at the VG in Halifax once a week for four weeks. It could also be done in Moncton or Truro but all the teams seem to what me as close as possible to them so I'll be doing it in Halifax. It has way fewer side effects than chemotherapy and has been shown to work fairly well. They'll be taking a positron emission tomography (PET) scan before and after treatment so they can locate all of the cancerous cells and compare to see how it behaves under the treatment.

The third step would be chemotherapy which I don't know a lot about as they keep saying stuff like 'if the Rituximab doesn't work, we'll go for the stronger stuff.' I'm reading that a doxorubicin-based combination of chemotherapy is often used. I don't know what that means other than a cocktail of medication. There is a lot to learn about this cancer thing.

When does the immunotherapy start?

Probably in two weeks. Next week will be my PET scan and consults so I don't forsee it happening before that.

Ok great, what's the long term prognosis rate? 

Well, that's a tough question to answer. The hematologist told me that there is a 35% five year survival rate but to take that number with a grain of salt as that is the survival rate for everyone with PTLD. Most organ transplants are of the kidney and the recipients tend to be older so when they develop PTLD, they have a much worse prognosis than someone much younger. There simply aren't enough cases on record for them to have an accurate stats of people post-lung transplant with PTLD. Or people under 30 with PTLD. Or people who are post-lung transplant, under 30, and awesome.

Wow that's a lot of information. 

Yup. But now it's all in one place.

Freaking out? 

Absolutely. 

Want to play a board game to forget about it? 

Yes, always (our conversations usually tend to move on to other things after this, I have the best friends).

*Most of my information came from the following links as well as the doctors*

If you want to read more about PTLD 
Or PTLD on Wiki
If you want to read more about EBV.
What's a PET scan??

Start of week four of hospital stay: Boo

There was little good news today.

My white count continues to drop so they didn't want me to go anywhere. They're keeping me in until my white count comes back up to a reasonable level where I won't get an infection if someone sneezes on me. The boosters are being increased to a daily thing which is good as they'll probably help. The downside is that the booster stuff really burns when it goes in. I always want to yell at the nurses but it's not exactly their fault.

CT scan results have returned and I guess the good news is that the lymphoma hasn't massively spread everywhere. The bad news is that is hasn't shrunk and has grown in a few spots on the spleen and lungs. While they aren't 100% sure that the spots on my lungs are part of the cancer, it's a pretty good guess seeing as they initially thought it was the CMV infection but that it's negative on my bloodwork, it can no longer be blamed for spots on my lungs.

So, I'll stay here for the weekend getting white boosters and making sure my hemoglobin doesn't go crashing out. Once my blood work is stable, they'll let me leave. Next week, either as an inpatient or outpatient, I'll have a positron emission tomography (PET) scan which will show exactly where all the cancer spots are on my organs. It will show if the spots on my lungs are part of the cancer or another mystery. I was told it's also a good scan to have on file as it will be a good pre/post comparison as to how I react to the treatment.

After the PET scan and some 'chemotherapy training,' I'll start the once a week infusions for four weeks as an outpatient at the VG. I'm not sure why I have to have chemotherapy training seeing as they keep calling it 'immunotherapy' and reassuring me that it's way less invasive on the body. Apparently there are very few side effects which is a giant plus.

I'm very discouraged, I really wanted out of here today. I didn't sleep much last night so I didn't have much in my emotional bank to deal with the news that I wouldn't be leaving and that I had to start immunotherapy. It's possible I started bawling to the floor doctor about how much I wanted out of here. She was sympathetic but did not say that my tears had changed her mind about my scary low white blood cell levels. I'm trying to be positive and hopeful about everything but today has been less than successful. It's hard to be positive about having cancer. I do, however, remain hopeful.

End of week three of hospital stay.

Three weeks in the hospital. Gah. And here I thought when I was admitted that this would only take a week to sort out. I was very wrong.

Today I learned that my white count has not been holding steady, even with the every-other-day boosters which is not good. In fact, it's been dropping rapidly so I'm once again at risk of catching everything. As a result, they've called off the gynecology team as they don't want to risk the chance of infection by putting in the IUD.

My hemoglobin has also been dropping steadily which is frustrating. This was suppose to sort itself out when they stopped a lot of my medication and have been pumping me full of IV iron every third day. The low hemoglobin does explain why I've been napping so much the past few days though.

What is happening, body?! Why aren't you making blood cells?!

After nothing happening yesterday, I had a fairly busy day today. It started bright and early with a pulmonary function test. My fev1 wasn't quite as scary low as it had been on my home machine but has still dropped a bit since my last test. Not sure what they'll do about that.

I also had my CT scan today. I had been told all week that it was scheduled for Friday and this morning I was told it was scheduled for 8am Friday. And then a porter showed up around 3 pm asking if I was ready to head down for a CT scan. Of course I was. I haven't heard any results yet from it though. *fingers crossed* I imagine it happened too late in the day for the drs to get the results.

And to finish off my day, I got a blood transfusion to pump up my hemoglobin. Yay blood. Thankfully I have the PICC line so it wasn't painful unlike with the terrible IV. Thank you to all the blood donors out there!

Since my CT scan is over, I'm really hopeful for discharge tomorrow and sleeping in my own bed tomorrow night. That would be fantastic. Also hoping that my CT scan comes back all negative and that my body has been able to fight off everything like the super body I want it to be.

Day 19 of hospital stay (I would've made better titles if I knew the stay would be so long).

Nothing has happened over the past four days. Just blood work, an IV of iron, a mild fever, and a lot of sleeping. The fever now seems to be gone which is excellent. They say that's because my white count is also up thanks to the booster I had yesterday so no complaints from me.

I'm now being told that they've scheduled a CT scan for me on Friday and that I'm not leaving until that's done. Booooo. I was hoping that I could be discharged and return as in outpatient for the scan. Guess not.

Also, the long lost gynecological team has been found. Apparently they were waiting for my white count to become better before putting in the IUD. A fact that makes sense but would've been better if they had told someone outside of their own team. At least now they're going to make an appearance at some point in the next few days. I'm clearly low priority as they aren't rushing over.

And that's all the news. White count is good. Hemoglobin is good thanks to the iron. CMV infection has returned with a negative count so they're going to halve that antibiotic for the rest of the treatment course.

It's all just a waiting game right now. 

Why is cancer so scary?

As I spent the last few days in a bit of a self-pity funk, by sleeping, reading, and fighting off a mild fever, I kept trying to figure out what makes the 'c' word so much more terrifying than everything else I've been through. I know you'll say, of course it does, it's cancer! But when compared to how I was around a year ago; when my body was clearly failing, my lungs were only working comfortably with a lot of equipment, and I barely had energy to go to the bathroom, this seems easy-peasy.

But yet, I'm much more flustered. It's possible that last year I had already accepted my lung decline for so long that I never had the stricken fear that I was going to die. It's also possible that I just didn't have enough energy to analyze the situation or panic.

There is something about the cancer diagnosis that brings a different set of fears and I'm not sure why. It may be because it's all unknown territory with the b-cells and lymphnodes, I feel like I'm going to have to learn a new language. The language of cancer. At least I knew what to expect with lung failure and had been expecting my entire life whereas Post Transplant Lymphoproliferative Disorder (PTLD) is an entirely new thing. I can't even pronounce it. It's also fairly rare so there isn't much to read about it except for some very confusing and boring medical articles. 

Cancer is also such a boogeymonster in our society where everyone knows they are susceptible but everyone thinks that it won't happen to them. The media doesn't help by washing everything pink along with their (often) misguided reporting every new study showing that a certain food or chemical causes cancer so don't miss your chance now to buy the new book 'cook to kill cancer' or 'top 10 foods on avoiding cancer.'

The good thing, at least, is that everyone seems to have that same gut punching reaction to being told about a cancer diagnosis. Maybe not specifically to PTLD (because no one's ever heard of it before) but I think people empathize more as they've most likely had someone they know have cancer. It hits a bit more home than chronic lung failure or chronic infection which they never really fear of getting. It's much more identifiable and it's also easier empathize while also easier to be hopeful. It's hard to be hopeful about chronic lung failure as there is no overcoming or 'winning' from it (except for a transplant, of course). But cancer, cancer can be beat. It can be won. People love using battle metaphors while describing cancer.

I'm not sure if I'm explaining this right. I'm immensely thankful for all the support everyone has shown me. I guess I'm trying to sort out why it now feels like I've joined some terrible club compared to when I got my diabetes diagnosis or when my lungs were failing. It seems so much heavier of a diagnosis even though I can't imagine how it can be worse than what I've already gone through (famous last words? I hope not.).

Although I remain hopeful that the lymph nodes will shrink significantly this week and no further treatment will be required, part of me is still freaking out. It did help to read a blog of someone else post-transplant, also diagnosed just under her one year mark, who underwent the 4 week treatment of the 'mild' chemotherapy and she didn't have many side-effects which is very hopeful. Today I'm feeling a bit better about the entire thing. Realizing that sleeping doesn't solve my problems, instead the way to solve my problems is to continue to bash things in Mario world on my computer. Muhahaha.
[Side story, I had a random tune stuck in my head for the past few days and I couldn't figure out what it was until I realized it was the MarioKart sound track. Isaiah and I have borrowed wireless remotes from a friend and clearly have been spending too much time zooming around.]

Day 15 of hospital stay: Summation and update.

My liver biopsy results have returned.

Quick recap for those who have not been following the play by play:

I was admitted two weeks ago after I ran a fever before my bronchoscopy, was shown to have multiple infections, and still had low hemoglobin. They started me on IV antibiotics for the various infections and brought in multiple teams to figure out my hemoglobin problem. They were also concerned that my CT scan from the previous day showed abnormal spotting (or nodules) on my liver and lower lobes.

I spent last week starting and stopping various antibiotics, both IV and oral, while they tried to find the perfection combination to fight off the infections. My white counts were also found to be at a scary low to which they weren't sure the exact cause. They figured it was due to the medication suppressing white count growth but wanted to rule out other options. After having various ultrasounds and countless blood work that didn't show anything conclusive, last Friday was the day of the biopsy. I had both a bone marrow and liver biopsy, the former to determine the cause of the white count suppression and latter was to see what was growing on my liver.

This week I spent waiting for test results to return and to see if my white count was going to drop off again now that I'm no longer on the booster needles. It seemed kind of pointless to me but they didn't want me going anywhere out of arms reach with my low blood counts. They were worried if someone sneezed on me than I would get a new infection. Which was probably far as my white count was super low and has dropped again since being off the boosters.

I was told that the test results would take up to two weeks but all the official reports were in today.

The good news is that my bone marrow biopsy came back negative. It showed that my white count was being suppressed from the medication as expected and that there was no other clear cause. Yay! Not yay growth being suppressed but yay to the fact that it's nothing worse.

My liver results came back today with less good news. In fact, terrible news. The biopsy results show that the nodules are post transplant lymphoproliferative disorder (PTLD). Ahhhhhhhhh. Can I not catch a fucking break. After all this, now I have cancer in my liver.

I knew that this outcome was possible when they did the biopsy but I was just hoping that it was a fun trick my body was playing on the doctors. Nope.

[Short summation of PTLD: It's a lymphoma that effects people with transplants as their immune system is suppressed to avoid rejection.  It's caused by the Epstein Barr Virus which is a quite common virus but most people are able to fight it off with their healthy immune systems. Because someone post-transplant's immune system down, EBV can start developing into lymph nodes and then lymphoma. It's not very common, the hematologist here said that she's treated people who've had it post-kidney and bone marrow transplants but never post-lung transplant. The CF team has never had any of their patients develop it, why do I have to be the first?]

The first stage of treatment right now is to wait. They've lowered all my immunosuppressants in an attempt to boost my white count back up as well as started me back on the white count boosters. There is a chance that once my white count is elevated, my body will be able to fight off the nodules itself and no further treatment will be necessary. The hematologist put this at a 50% chance. Seeing as I had a 1-2% chance of getting PTLD in the first place, I'm not sure how I would bet on that one.

The second step will be what she called 'localized radiation' but with an infusion of some medication. She said the name of the medication a few times but I was too busy trying not to have a meltdown that I didn't quite catch it. That treatment would happen once a week for four weeks and she said the medication has 'mild' side effects compared to regular chemotherapy.

If that doesn't work, then we start the full out chemotherapy. I can't even think about that step.

I'm still a bit in shock. I'm sad and feel defeated. I came in just hoping for some medication to get my lung function back up and my hemoglobin to be stable. I wasn't looking for a side of lymphoma to go with that. I guess the very small silver lining is that they caught it relatively early. My last CT scan the first of September was clear so it would've just developed over the past two months. Hopefully that means that my body can beat it back just as quickly as it arrived.

So, not a great Friday the 13th for me. Or anyone in the world it seems.

A picture of a pretty tree to distract me from cancer.

Day 14 of hospital stay

Let's start with some good news, I got out for a bit of a walk yesterday which was much needed. Also, the prelim results of my bone marrow biopsy shows only suppression due to medication. There appears to be no other inhibiting factor which is a relief. No news yet from the liver biopsy. I was told it could take up to two weeks, as I was told with the bone marrow one, so the results could come back anytime from tomorrow to a week from now.

When the floor doctor came in to see me this morning, she was full of optimism that I may be out of here tomorrow. Apart from some of my blood work that hadn't returned yet, she said everything was looking good and stable and that she felt I was ready to be discharged with followup. She then went off to find the missing gynecology team who haven't made an appearance since last week despite saying they would be here on Monday.

When she returned with the CF coordinator a few hours later, I knew it was not going to be as positive of a conversation. All of my blood work results had returned and my white count has been dropping since I stopped the boosters. The team had been hoping that yesterday's drop was a one time incident but today it shows that the levels have halved in the past two days. Also, my hemoglobin has once again dropped which is also concerning as I'm not bleeding anywhere.

As a result, they aren't letting me go anywhere until they can figure out a solution to the white count levels. Since I'm here, they're also giving me IV iron in an attempt to help my hemoglobin along. So far, it seems to have done nothing.

Looks like another weekend hanging out in 8.4. Arghhh!!!! I was so sure that I would be out of here by the end of this week as I seem to be just waiting around for test results and the occasional blood work. I guess now I'll actually have to fill out my menus for next week. More pie and chips for Isaiah and I! We'll crank up the heat and pretend we're in Aruba. 

Trip Sadness.

Before I begin this sadness rant, I feel like I need to preface this with the fact that I know being upset about a trip is, in the big picture, a trivial thing. There are thousands of issues that warrant anger and sadness and that I am lucky to have even been able to consider a trip out of the country.

That said, as humans are multifaceted and can feel sad for more than one reason at a time and everyone should be allowed to feel sad when necessary, I'm super frustrated/sad/disappointed/angry about having to cancel my trip to Aruba. I know it sounds frivolous and I realize it's just a vacation that so many people would love to dream of taking one day, to me, it meant so much more.

Back in May, Amy and I started a planning a Caribbean trip for November. It was to be a celebration trip for my one year post-transplant. Pretty soon the entire family had jumped on board and it had turned into - what was going to be - a big celebration trip about the transplant and us all getting through those very tough months.

I was given the all clear to travel outside of Canada so we booked everything and I had been really been looking forward to the vacation. Not just because I really wanted to go snorkeling, walking on the beach, and chasing sunsets, but because of what the trip represented.

This trip meant that I was getting back to my regular life. It meant that I could travel like I did before the entire transplant process started. It meant started to dream about what else I could do now that I was at my healthy 'one year' mark. Traveling and seeing new places brings me such joy and means so much to me that being able to return to that experience, even for a week in the Caribbean, was a big first step to feeling like I had survived and beaten the horrible transplant experience.

And now I'm in the hospital and unable to go. If it was a different trip, with a different purpose, I'm not sure I would be taking it so hard but this was my first big trip away since this entire thing started so it seems that much worse. It's bringing back all the memories of having to cancel my trip to Spain in 2013 when I was told that if I went, I may not return alive. I've been through so much since then and I was moving beyond that and now I'm still here. Still in the hospital. Still unhealthy.

It's so discouraging. I mean, I know, rationally, that I had a good summer and that this is probably just a blip but it feels like the start of everything all over again. I'm being forced out of doing the things I love because of my disability and I hate it. I hate feeling like my body is in control of my life and that I can't just push past it. I hate the feeling of helplessness when everything I had planned is changed and it's all out of my control. If only there was a way to force myself to make more blood cells.

I know I've made the right decision about putting my health first but it's such a hard decision to make. I never wanted my disability to rule my life and it had for the past two years. Just when I thought I might be able to move past it a little bit, it's sucked me back in.

Everyone else is still going on vacation of which I'm thankful. Isaiah now isn't going but I would feel worse if I ruined the vacation of everyone else. Although, I'm sure it will feel strange for them to be on a celebration vacation when I'm not able to be there. I'll try not to guilt them too much.