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.

Day 12 of hospital stay.

Not much has changed in the last two days. They've been surprisingly quiet which has been both good and bad.

It's been good as I've had more time to rest to heal my aching body. It's given me time for the pain to decline over the past two days and I've also gotten some of my appetite back. Enough to enjoy some of the pie that the kitchen sent up to me. Everything feels better when I'm eating lemon meringue pie. The dietitian will be very happy about that. I've been losing weight quite rapidly and it's making everyone, myself included, very worried.

The downside is that I feel a bit in limbo waiting for test results to return and for doctors to make decisions. A bit more concretely, I'm waiting for the gynecology team to make an appearance. They were suppose to show up today but apparently 'no one was in the office' when my nurse called over. It made no sense to anyone and seeing as tomorrow is a holiday, I can't imagine I'll be seeing them before Thursday.

My white count has come up a bit with the help of the booster needles which is excellent news. I'm much less at risk for catching every single bug. The question is now whether or not the levels will stay up without the boosters. My last dose was last night so by tomorrow they should be able to see if it's holding stable or dropping again. They've taken me off a lot of the 'white count dropping' medication so I'm really hoping that it will maintain as it is.

The only real thing that happened today is that they put me on saline IV as my kidney and blood sugar levels were a bit high so they're hoping if they can keep me super hydrated, that will come back down. It doesn't surprise me that I've been dehydrated. I always feel dehydrated at night and don't remember to drink enough water during the day as I'm less likely to think about it while sitting around.

I'm anxious to get out of here, I feel as though I'm just waiting for test results to come back which I could easily wait for at home. Now that some of my energy has come back, I'm starting to get a bit more restless. Hopefully tomorrow I can at least go outside for a walk. I haven't been outside in over a week and am starting to feel the effects. I wanted to today but was scared about missing the doctors so wasn't able. By the time I knew it was too late for anyone to show up, I was strapped to the saline IV. I can't imagine any non-necessary doctor will be in tomorrow so I'm going to really push to be able to go outside for a little bit. Even if I take my IV pole. I'll just stand outside, away from the smokers, and breathe in some fresh air.

Day 10 of hospital stay: Biopsy edition.

I had both biopsies on Friday. It was terrible. Everyone lied when they said the noise was the worst part. No surprise, the worst part is the pain.

The bone marrow biopsy was scheduled for 11. So I spent most of the morning trying to colour my way out of an anxiety attack with reasonable success. However, when they didn't show up at 11am, I started to freak out. By that point I just wanted it to be over with and dragging it out anymore just meant extending my stress about the entire process.

The team showed up around 1115, which really, wasn't that late. They prepped everything and had me lay in the fetal position on the bed. I put my music on and tried to zone out of everything. After wiping my hip off with iodine and other sterilizing chemicals, the doctor injected the freezing into the site. It was painful. Thankfully though, it worked pretty fast so I didn't really feel the other freezing needles go into the site. I was very optimistic that it would be over quickly.

And then we had to wait for the lab tech to show up. I didn't know this before but for a bone marrow biopsy, they have to make the slides for the lab immediately before the blood starts clotting. While we were waiting for the lab tech to show up, the doctor talked to her students about what was going to happen and kept the needle in my back as a placement for where she had frozen. I couldn't feel anything but it was still weird to hear not to move as I had a needle stuck in my back.

The lab tech finally showed up, set up his slides, and gave the all clear to proceed. I was worried the freezing may have worn off but that stuff was powerful. The spot was frozen for the rest of the day. I could feel the doctor's hands moving and some pressure but that was about it. She gave me a play by play of what she was doing which I think helped calm me down a bit. It didn't hurt until she got the needle into the bone. I didn't hear any bone crunching, probably because of the music, but I sure felt it. As it's impossible to freeze bone, not much can be done to mitigate that part. She suctioned out marrow three times while telling me the entire time to breathe through the pain. In through the nose, out through the mouth. It was like she was coaching me on having a baby.

I thought we were done until she said 'now onto part two!' No one told me it was a two part procedure. She went in a second time to get part of the actual bone. It didn't hurt as much as the suctioning part but it definitely was not comfortable. The worst part was when she was bringing it out she said causally "oops, almost lost it there." Please don't lose a piece of my bone in my back. She told the students that occasionally the piece is dropped on the way out of the body or onto the slide. They need a better system.

By the time it was all over, I had sweated buckets and was exhausted. It felt like I had been through a workout. Thankfully though, my back wasn't hurting as it was still frozen.

I managed to decompress for a bit when two hours later, a porter showed up in my room asking if I was Allison Watson and was I ready to go to radiological intervention. I replied that I was Allison, but no, I didn't know anything about going anywhere else that day. My nurse also didn't know why the porter was there either so she called down and found out that I was off for my liver biopsy. It was the day of the biopsy.

Once I was in the room, the nurse asked if I was ready to which I replied that since I found out it was happening 5 min ago, I guess I had no choice. At least I didn't have any time to get anxious about the process. The doctor ultrasounded the liver to find the best spot to go in. It turns out that my liver is high up on my body so most of the spots they wanted were under my ribcage. This lead to a lot of discussion between the two doctors in the area and a consultation of the CT scan. It also meant a lot of jabbing my ribcage with the ultrasound wand. Those things are not soft.

Eventually, they were happy that they found a way in and started prepping me for the surgery. Thankfully, this meant sedation. They told me they would only give me enough to make me pain free and relaxed as they need their patients to be semi-conscious in order to follow instructions about taking deep breathes and whatnot. They gave me the sedation and I was still very much wide awake and aware of pain. So they gave me more.

And I woke up in the hallway when the porter was wheeling me back to my room. It was excellent. I was very much out the entire time. They had written orders for me to stay in bed for 2 hours afterward which was fine by me as I spent the rest of the day sleeping off the sedatives.

I thought everything was going to be as painfree as I was on Friday until I woke up on Sat with pain everywhere. My liver hurt which was a weird feeling that I didn't think was possible. Also, my hip/lower back hurt from the bone marrow biopsy. I spent most of yesterday in bed as well recovering and napping.

Today I'm in slightly less pain but am still taking regular tylenol to help manage it. I had visitors for most of the day so I wasn't able to nap all day which was probably a good thing. At some point, I need to get up and move around a bit. I wasn't prepared for both sites to hurt so much afterward but in hindsight, it shouldn't surprise me as they were sticking needles into my liver. 

I have no idea what's scheduled for tomorrow but I hope nobody else wants any more tissue samples.

Day 7 of hospital stay.

The last two days have been full of tests.

I had my pelvic ultrasound yesterday which I found out, when my nurse walked in with 4L of water, involves drinking enough water to make me feel ill for the entire day. The nurse told me to drink all the water in an hour (which I tried but ultimately failed to do) but when they sent me down, the tech said that it wasn't enough.

She sent me back with instructions to drink more. I drank water for the rest of the morning until I thought it was enough and felt super bloated. I went down again and the technician said that I was only half full but that it was enough to do the ultrasound. I would've cried if she told me I had to have more liquids. The results all came back negative which is excellent.

In the afternoon, I had a echocardiogram because the floor resident thought he heard a heart murmur and in my opinion, overreacted. It's good that echocardiograms are pretty easy exams and I didn't have to drink anything extra which was welcome news. Everything came back negative for that test too.

Today, was much more quiet. I had a lot of blood work drawn but no real tests. I got a unit of blood this afternoon as my hemoglobin is back down and have started the white blood count boosters. The boosters really burn while being injected so I hope they're being honest when they say it's only for one week.

As far as the biopsies go, they had to wait for my blood thinner levels were low enough to safely do the procedures. They were finally at a safe range today so my bone marrow one is booked for tomorrow at 11am. I'm not looking forward to it.

Everyone who has witnessed them, say that besides the pain, the worst part is hearing the needle burrow through the bone. Since they do it right in the room, I wonder if I'm allowed to listen to really loud music so I don't need to hear anything. I'm hoping that they'll let Isaiah stay in the room as well to distract me although I don't think he'll be a fan of the bone crunching noises either.

After that, they're going to wait for those results before going ahead with the liver biospy so that will probably take place early next week.

I've had no time to get bored. I'm really tired a lot so I've been spending time napping in between all the visitors I've been getting. I know I'm starting to feel better when I start getting antsy and want to go out on passes but since I'm not at that point yet, I'm still content with my colouring books and light reads.

My dragon colouring!

Day 5 of hospital stay.

The last two days have been pretty busy. I'll go through each team that I now have following me as it makes everything a bit easier to understand.

CT Scan: It showed some spots on my lower lungs that may be the CMV infection or something new. As a result, I had an abdominal ultrasound yesterday morning as further investigation. That showed spots on my lower lobes, liver, and spleen.

Infectious Diseases and CF team: My lungs are still infected with the aspergillus along with a few other bacteria. After the bronchoscopy on Friday, they determined that it's actually two strands so are adjusting my medication accordingly. The problem is that a lot of my medication reacts with each other so the pharmacists have been busy looking up drug interactions and side-effects.

My CMV infection is responding well to the medication which is excellent news. However, the medication that's treating it be lowering my white count as that has turned extremely low.

My lung function has not really improved at all but it's also not dropping.

GI team: They were called in to see if my low hemoglobin was being caused by a GI bleed. After investigation, they determined that it was not. They said that a colonoscopy would be pointless, yay!

Hematology team: They want to figure out for sure what is causing both the spotting on my liver/spleen and what is crashing out my white count. The theory about the spotting on my liver/spleen is because my recent bloodwork shows that I have an infection called Epstein Barr virus, EBV (otherwise known as the mono virus).

This does not mean that I have mono (they did put a request in for the testing but don't actually think I have it), it only means I have the virus which could lead to mono. It could also lead to something called Post Transplant Lymphoproliferative disorder. They mentioned this was a possibility pre-transplant as I was EBV negative and I could get lungs that were EBV positive (as most of the population has the EBV virus). Long time readers may remember that post. It's here if you want to review. I was very glib about it at the time. Apparently, I should've taken it more seriously as now I've ended up with lungs that were EBV+ and it's developed into a virus.

Naturally, they want to biopsy the liver to confirm what is growing. The liver is the easier option of the three spots with nodules so they'll start there. That may take until next week to get booked.

As for my crashed out white blood count, they theorize it's because of all the various medication I've been on. However, they want to rule out 'other options' - as the resident said. I told him it was okay to say the word 'cancer' to which he responded 'yeah, basically.' They plan on doing a bone marrow biopsy in the next few days to figure that out. They're also starting me on some 'white count booster' needle to help bring my numbers up.

They're also stopping my blood thinner as they say that it's pointless for me to be on it as my risk of clotting is less than my risk of bleeding everywhere. 

Gynecologist: They theorize that one of the main reasons for my low hemoglobin - which has dropped again after the transfusion - is because I've been having my period more and heavier than normal. That's being blamed mostly from being on blood thinners so they want me on birth control to try and normalize it a little bit. However, they need to rule out other options for my frequent periods like cysts so I'll be getting a uterine ultrasound over the next few days.

General: I also got a PICC line in today so they can thankfully stop stabbing me so often for IVs and blood work. I also received a bolus of iron tonight to help my numbers up a bit. My appetite is up slightly today so that's positive.

All and all, there has been a lot of information thrown at me over the last two days. It's been exhausting. I'm happy that they are investigating why I've felt so poorly over the past month and seem to be consulting with all the right people. Nothing that can be ultrasounded is going unultrasounded. No blood levels that can be checked are going unchecked. No parts that can be probed are going unprobed. They'll get to the bottom of this, whatever it is. As for now, I'm going to zone out with some mindless reading and try to forget about all the 'what-ifs' the last two days have brought me.

Day 3 of hospital stay.

Day 3 in the hospital and I'm not getting restless yet. I've gotten two units of blood which seems to have helped a lot, at least I think they have. Mom and Dad drove down to visit today with goodies and we went for a little walk around the commons without me getting lightheaded. Yay to that!

I still don't have an appetite though which is too bad as people keep bringing me Halloween candy and the hospital keeps providing me with bags of chips and pies. I'm surrounded by yummy food but my stomach doesn't care.

I'm back on the general admittance floor which means a lot of patients with dementia who wake up at 4 am wondering very loudly if they can go to church yet. Well, that was a one time thing but you get the idea. At least the nurses seem to have worked with people with CF before so know the medication pretty well. My day nurse was awesome and she told me that she had been taught to let patients with CF sleep in as long as possible in the morning. So much better than having a Personal Support Worker yell at me at 7am to get up for breakfast.

Medically, not much has changed. My IV blew out with my morning antibiotic without my noticing so I had a weird bulge of antibiotic in my arm until it was all absorbed. Exciting times here in Halifax.