Monday, 29 February 2016

Rare Disease Day: Me and PTLD

Happy Leap Day! And Rare Disease Day!

There are many rare cancers in existence. And I'm lucky enough that post-transplant lymphoproliferative disorder, my cancer, is considered to be one of them. (A refresher on PTLD). It occurs in 3-10% of people who get a transplant (depending on the organ transplanted) and seeing as according to the Government of Canada, only roughly 2000 people get a transplant every year (data from 2006-2012), that puts me in a pretty small percentage. Add to that my cystic fibrosis and the percentage gets even smaller.

Which is why my doctor's looked like they were having a heart attack when I was diagnosed. And why, like Alicia, when I go to the emergency department, I have to explain everything to the doctor on call who looks panicked and gives me the blank stare. No one knows what to do with me until I tell them which is terrifying.

I thought it was bad enough to be hospitalized while having cystic fibrosis as the nurses on the general floor were always a bit panicked that they're going to break me. Add on transplant and a rare cancer and some of them treat me like a zoo exhibit. "We've never had one of you before." Fantastic.

It's not so bad in Halifax once I get through the emergency department and to the hematology floor. Once I'm on the floor the nurses have either a) seen me before or b) just focus on the cancer part. However, getting through emergency is such a headache. Every nurse and doctor want to hear about my story which is long enough as it is and even longer when I have a temperature of 39 degrees, been up since 4am, and feel like I might throw up.

For having a rare disease, I am lucky. My medication is covered by the NS health care system and I know that I'm getting the best medical care available. The doctors in Halifax are consulting with the ones in Toronto who have seen more cases which is comforting. The amount of research and information about the cancer overall, however, is still quite low. There are no good statistics about the outcomes of someone with PTLD as everyone with every organ transplanted gets lumped under the same statistics. Someone with PTLD who had a liver transplant is very different than my lung transplant. There simply needs to be more research and once again, there is always a lack of money around rare disorders/diseases.

Having a rare disorder sucks. The lack of research, community, and medical knowledge is frustrating. It does seem to be improving as communities find each other on the Internet and research is shared more easily between hospitals and countries. However, it's getting pretty old when I'm told for the thousandth time that I'm a "1 in 15 year case!" I know, please just read my chart in silence.

For more information about this entire day and organizations that help people find their communities:

Rare Disease Day 

Canadian Organization for Rare Disorders  

Rare Disease Foundation

Rare Disease Awareness: More about the Canadian Action Plan

Sunday, 28 February 2016

Rare Disease Day: Heather and Mesothelioma

Today I'm also profiling someone else with a rare disease. After this you won't know about every rare disease but you'll know about at least three. (Maybe read Part 1 and 2 of this 'series' first). I first found out about 'Rare Disease Day' through Cameron whose wife was diagnosed with mesothelioma in 2005.

Mesothelioma is a rare cancer that occurs in mesothelioma of the body (the thin layer of cells lining the body's internal organs). Around 80% of the cases can be attributed to asbestos with about 3000 people in the USA are diagnosed with mesothelioma a year. Even though asbestos is banned in many countries, somehow it's not banned in the US or Canada (I thought it was, because it should be) because we know it causes cancer. And not in the way that 'eating bacon may cause cancer' (don't feel bad about eating bacon). Part of the problem around diagnosis is that the cancer can be dormant for 20-40 years after exposure to asbestos. Those diagnosed with mesothelioma have a poor prognosis overall with most people having a life expectancy upon diagnosis of 1-2 years. However, the more research and treatments into this rare cancer, the better the survival rates become.

Two excerpt's from Heather's Story:

"A cancer diagnosis throws you into an unknown world. In this world, emotions roll over you like big ocean waves. What the future holds, the future you thought you had so carefully planned out, all of a sudden changes with 3 words: “You have Cancer.” People are quick to give advice, or tell you how they know a person who knows a person who died from your kind of cancer. They mean well, but don’t quite know what to say because suddenly, looking at you and seeing themselves, they are faced with their own mortality. The feeling of loss is hard to explain, but it’s perhaps one of our most universal experiences as humans.

Without treatment, I wouldn’t live past 15 months. In November of 2005 my doctor said I had malignant pleural mesothelioma. He said “cancer,” but all I heard was that I might not be able to raise my three month old daughter, and my husband might become a widower after just six and a half years of marriage. I learned that my father, a man who worked in drywall construction, had unknowingly exposed his own little girl to asbestos through his work jacket. Treatment options were limited and there was no guarantee. Today, I’ve outlived my original prognosis and continue to raise awareness of this terrible disease."

Read all of Heather's powerful story here. More about Mesothelioma Cancers here.

Rare Disease Day: Alicia and RTS

For part two, we're lucky to have a guest blogger! Thanks to Alicia for sharing about having a child with a rare disease. (For part one, see yesterday's post).

"Happy Rare Disease day! My family is all too familiar to this day because my 3 year old son, Anderson has a rare syndrome called Rubinstein Taybi Syndrome (RTS). The occurrence of RTS is 1 in 125 000 - 300 000 and for 90% of individuals with RTS, the genes associated are written wrong. However, in my son’s case, and for the other 10% of the RTS population, he is completely missing the RTS gene making him rarer than one in a million. That makes us genetic lottery winners. 

There's this stare that happens whenever I tell people of my son's syndrome. Anyone who has a loved one with a rare disease has experienced the blank stare. No one knows what to say. It's much worse when it comes to situations, like I experienced last night, when I brought my feverish, snotty child to an after hours clinic and told the doctor his syndrome, to meet the blank stare. I don’t expect every physician to know about this rare disease but it is a little nerve wracking to see that face then have them prescribe medications that they think will be best for Anderson. 

We try to avoid after hours clinics for this reason but it’s sometimes unavoidable. I find myself having to become the educator. I’ve learnt to be brief and only discuss what is necessary for that moment. I direct his care from explaining his anatomic differences that contribute to his symptoms, to the usual progression of illness, to the drugs that work and do not in this situation. Sometimes the doctors look like they are going to vomit because they don’t know anything about this disease I just enlightened them with. This is followed by them leaving the room to “check medication dosages” but, let's be real, they are googling his syndrome. We have left the room before and seen it on the desktop. This actually gives me a bit of comfort, at least they are doing their homework. 

With something so rare, there isn’t much research to guide his care. The research that does exist is dated and standards of care vary from country to country. We have tried google but that can be very scary. Have you ever googled a car crash? It never pops up as the cutest little fender bender you have ever seen, it’s always the fatal crashes Google chooses to show you. The same theory goes when googling RTS or any medical conditions. Therefore, we rely heavily on our RTS support group through Facebook. Any questions that arises, we ask the hundreds of families and get responses from around the world. Without social networking we would be lost. Our support group has also given us hope for our future. Research painted us a grim picture. Our RTS family has helped us surpass the research expectations of simply living past one year old and communicating through sign language. 

Having a child with a rare disease has helped us let him set his own pace. He will never follow the public health standard, which is fine by me. RTS is an enormous part of our lives. It has changed us. It has made us patient and excellent at coping with unknowns since that is what we are constantly living. My rare gem has many RTS traits but he is also a son who wants hugs and cuddles. He is a toddler who won’t stop bugging you until you turn on his favourite cartoon. He is an annoying little brother who pulls on his sister’s hair just to laugh at her reaction. He has a sweet tooth like his dad, only wanting feeding therapy when icing is involved. And he doesn’t think twice to wrestle his baby brother when his favourite toy gets ripped out of his hands. He is one of a kind, but aren’t we all? He just helps us frighten doctors more than our other children!"

Thanks Alicia! Learn more about more about RTS here.

Saturday, 27 February 2016

Rare Disease Day: Intro

Monday is Rare Disease Day. What is rare disease day, you ask? You're about to find out (if you keep on reading). I'm turning it into a weekend because, turns out, I have much to say. When I was first informed about it (about a week ago), I thought it happened only on leap years but apparently it's the last day of February. It's just a coincidence that this year happens to be a leap year. I guess organizers don't want a day that only comes around once every 4 years...even though it would be perfect because it's a rare day. Anyway, let's move on to all the questions I'm sure you have.

What is rare disease day?

It's a day to bring awareness to the diseases that don't often get a voice. It was started in Europe and the main purpose is to "raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases." (All the italic information is stolen from

What is a rare disease and how many people have one?

It's hard to get exact numbers but "in Europe, a disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. In the USA, it's defined as rare when it affects fewer than 200,000 Americans at any given time." I'm not sure why the two regions need different classification systems or what Canada considers a 'rare disease' although according to Canadian Organization for Rare Disorders (CORD), 1 in 12 Canadians has a rare disorder, which seems like a lot.

According to, there are over 6000 diseases that are considered 'rare diseases' which vary "not only from disease to disease but also from patient to patient suffering from the same disease."

Every cause has a 'day', why do I care about rare diseases?

Other than because you're an awesome person? Rare diseases are terrible to have. They often go misdiagnosed or untreated because...they're rare so no one knows about them. Often the symptoms can present as other ailments and the medical professionals look to the most common causes first. This can lead to delayed treatment, if there is even treatment available. The lack of people with a disease often means limited research which means limited treatment options.

One of the major problems is even when treatment is available, it can often be expensive. As pharmacy companies don't put much research into medication that treats only a handful of people, when they do, the medication is often out of the price range for the average person. CORD advocates for a Expensive Drug for Rare Disorders policy (amongst other things) which would help many Canadians. I recognize there is always a balance and a fine line between how much the government should spend on medication to keep one person alive and how much it should invest in medication that would benefit more of the population. A debate that I'm not going to get into here.

Even with CF, even though it's not considered a rare disorder, in NB there is often a delay in getting medication as approval needs to go through several levels of doctors. That delay of a few days can cause further spread of infection in the lungs, leading to a longer recovery.

Another major issue about having a rare disease is the lack of understanding in the medical community. It's great once a person has a diagnosis but that doesn't help when going to a local emergency clinic when the one doctor on staff has no idea of what you are referring. No doctor can know about every disorder but general awareness could help improve the lives of many.

What's being done?

As the international community continues to grow and share information, progress in research is being made for the rare diseases. "The increase of international cooperation in the field of clinical and scientific research...(and) the sharing of scientific knowledge about all rare diseases, not only the most "recurrent" ones. These advances have led to the development of new diagnostic and therapeutic procedures. However, the road ahead is long with much progress to be made."

Organizations like CORD are helping push for better treatments as well as organizing people who have a rare disease together. The Internet has helped bring so many communities together of people who thought they were alone. It's not all cat videos and racists. 

There's your background on Rare Disease Day. Tomorrow is going to be a special guest blog from a parent with a child with a rare disease and a profile of a woman living with a rare cancer. On the 29th, I'll talk a bit about what it's like for me to have an equally rare cancer. Stay tuned!

Friday, 26 February 2016

15 months!

It's my 15-month lungaversary today! Thank you donor!

I'm thinking about it a lot today because I spent much of yesterday on the couch working on my transplant story. It's mostly just a collection of my blog posts but I find it's hard to edit as when I start writing about some of the more terrible moments (anxiety attacks, bleeding, pooping, etc...), I start getting anxious. Turns out writing about anxiety attacks causes anxiety. It's like an intense flashback where I'm reliving all the emotions I had during those moments. Add to that all my hormones from the chemotherapy, by the end of yesterday, I was an emotional mess. So I locked myself in my art room and made some Easter cards until I was calm enough to talk to Isaiah without a) crying or b) yelling at him.

I don't know if the medical world would classify mild anxiety regarding past events as PTSD but it's how I imagine PTSD to be. Only I realize it's much more severe with real PTSD. And seeing as I'm doing the thing that is causing the trigger, I know it's somewhat self-inflicted. I hope that each time I revisit the stories, it'll get easier. It hasn't so far but I hope that it'll work as some sort of exposure therapy and that it will no longer get my heart rate up when I write.

Most of the story is fine, the worse part (besides all the blood and poop stories) are the days before the transplant. I think a lot of the anxiety is coming around being forced to reflect on the moments where I was very close to dying. It's not something I contemplate on a deeper level very often. I do talk a lot casually about how the transplant saved my life but thinking about the actual events is different. During those weeks before the transplant, I had no perspective that my lungs were in complete failure and that I was about to be ventilated if I didn't get new lungs. I was ever optimistic that the blood clot would resolve itself and I could go back to being stable. I had to be optimistic in that moment because it was the only way to get through.

Now when I look back it's more of a 'holy shit, I didn't have energy to get juice from the fridge that was within arms reach of the bed. How did that happen? Ahhhhh.' It's like a much delayed reaction to events that I've been avoiding revisiting. So yes, I'm working on the transplant story but it's going to be awhile because I work on it until I get anxious and then I go on Twitter and make jokes. Also because I no longer know how to end it. I had a perfect ending written but since I had to go and get cancer, it doesn't seem to wrap up quite as well. Maybe it'll just be a "and now I have/had cancer. The end" cliffhanger. Or maybe I'll just wait until all this is over and add another chapter at the end. Decisions, decisions.

While I was taking a break from the editing, I made a mock up cover that makes me laugh.
The title needs some revising.

Wednesday, 24 February 2016

Survived cycle 5 of chemotherapy!

I survived cycle 5!

Everything was about the same as last time. No news from the doctor other than she thinks that my going in for saline the week after chemo last cycle was pointless. This cycle she just wants me in the city to 'be around' for when/if I get a fever as it's easier for them to take care of me when I'm at their hospital. I thought that she might want to just preemptively hospitalize me but she didn't seem interested in that idea. I hate going through emerg and explaining everything a million times but it seems like there is no other way to do it.

I had a bit of a reaction to one of the medications this time which was new. I'm always pre-medicated with Tylenol and Benedryl to try and prevent an infusion reaction. It's always worked in the past so I'm not sure what happened this time. My theory is that my body has become accustomed to Benedryl so it's no longer as effective. The first two times I had it, it knocked me out for a good nap. This time though, I was barely drowsy.

My face became super flushed and then when the nurse was pushing in the pink medication I started feeling faint, as though he was giving me a sedative. He kept asking me to describe my symptoms and I didn't know how to explain it other than it felt like my entire body was relaxing and that someone had put a heavy blanket on me. I don't think that was a helpful description as he kept asking me to expand on how I felt and I just kept saying 'like you gave me a sedative'. Apparently I need a bigger vocabulary. He gave me more Benedryl and I was able to lay down for an hour while the drugs went through which seemed to solve the problem.

The last part of the day was the intrathecal injection (spinal tap). The doctor that did it the last two times wasn't there which sent my anxiety shooting through the roof. I hadn't been nervous about it going in as I like the other doctor and am very confident in his abilities. I was not confident in this new doctor because he was someone new and also because the nurse was asking him how long he had left of his residency.

[I know residences are capable, I just sometimes prefer doctors that have done a few more procedures and don't talk during the prep about how hard the last procedure was. I don't want to hear 'this morning I had the worst time doing this with an older gentleman' before you do the exact same thing to me. Save the stories for later.]

So I was leaning on the table with my head on the pillow blasting music and trying not to have a panic attack when the nurse decided that she would hold my elbows the entire time. I guess to try to comfort me...? It was not comforting. I don't like strangers touching me and while I may have seen you for the past 6 hours, you're still not someone I would turn to for a hug. I don't like when nurses rub my knees and tell me it'll be okay. I don't like when they try to hold my hand or rub my shoulders. I don't know you, don't touch me.

When I'm in pain, I don't even want people I like to touch me. I don't know how the nurse didn't pick up on the clue that if my partner is sitting in the corner while I'm crying into a pillow, that means that the best thing for you to do is leave me alone. If I don't want elbow rubs from Isaiah, I sure as hell don't want elbow rubs from you. Argh! I should've said something but I knew if I did it would've come out as "STOP TOUCHING ME!!!" and not at all diplomatic. Next time I'll try to say something ahead of time like 'ignore my sobs.' Or maybe Isaiah can just hover around me to keep the nurse away.

The injection really wasn't that bad in the end, the resident did a fine job. He took some samples which looked clear which is excellent. If I don't hear anything from them in the next few days, that'll be even better.

I'm spending today laying down as instructed. This doctor told me that the whole 'drink all the coffee and eat salt' thing has no medical evidence behind it but I will continue as I have the previous cycles because it seemed to work and also because coffee. And bacon.

The pink medication that can turn the urine pink and cause the bladder to bleed. Thankfully has not happened to me yet.

Monday, 22 February 2016

5th cycle of chemotherapy

I'm off for my 5th cycle of chemotherapy tomorrow. We spent the day shopping in Halifax which was fun. Window shopping mostly but I did manage to stock up on some art supplies.

I hope tomorrow goes well, my back is already a bit sore so I'm not convinced that I'm going to bounce back super quick from this round. It seems to take a bit longer each cycle to recover. Or perhaps I'm just not getting enough sleep.

Saturday, 20 February 2016


I've reached the age where a lot of my friends are starting to have children or are thinking about having children. Basically, there is a lot of talk about babies in my life right now when I talk to my friends. Which normally doesn't bother me. I'm happy for them to be moving on to that stage of their lives.

But I can't help but feel like I'm being left behind somehow. Not because I want children. I've never had a desire to reproduce; whether or not that stems from being told that the chances of me having children are very slim or I simply don't want children is something that would take a psychiatrist years to unravel.

However, this is the first time where having cystic fibrosis feels like it's blocking me from part of being an adult. I've been able to do all the other 'adulty' things, but it seems that making the actual decision to have children is something that I would've wanted. I guess it's the difference of having something stolen from you versus giving it away.

I didn't realize this until all my close friends started talking about babies and then the full force of the chemotherapy drugs hit me a few weeks ago. It seems that there are two days in the chemotherapy cycle, after the jaw pain and the no white count where it's a full out hormone attack on the body. During those days last cycle, I had several panic attacks about nothing overally important but one of them was about the fact that it seems that everyone is moving on without me.

I don't think that I'm jealous of their having children, I think it's more that I would like to at least have the choice. Men with CF are usually 100% sterile. I know some women with CF have children but those women tend to have a more mild form of CF or have the children when they're quite young and healthier. Women with CF usually have a hard time conceiving due to the extra mucous in the uterus (it's not just all in the lungs). And then if they get pregnant, carrying a baby is hard on the lungs so it's not recommended for many women with CF as it would make them even more short of breath. There is also a lot of nutritional aspects to consider as often women with CF are underweight and then having to eat for two can be very difficult. All in all, it's very difficult. Of course now with the chemotherapy, I'm doubly infertile.

[Side story: when the pharmacist was rambling off the list of side effects from the chemotherapy an hour before I got my first dose she failed to mention infertility. Until she came back in the room 20 minutes later and casually mentioned 'oh, by the way, you'll most likely be infertile after this, have a good chemo session!' What if I had planned on having children? You tell people 30 minutes before their first dose? I don't think any woman planning on having children would process that information well when she wouldn't have time to prepare a plan B like freezing eggs. It was all so sudden.]

I know that I could adopt or have children other ways. However, with my shortened life expectancy, I just don't think it's worth agreeing to support a child only to die early on in their childhood. The other thing is that I can't exactly take care of a child when I'm too busy taking care of myself.

This isn't something I think about very often and not something that often makes me sad but it just hit me and I can't get it out of my head. I thought maybe rambling on about it would make me feel better. It's not really a big deal, I'm happy with my childless life, it's just that it's another reminder of how having cystic fibrosis limits certain parts of my life. And I don't like those reminders.

I ended up calling Amy in my panic to ask how she dealt with the feelings of being left behind and her response was basically to 'get use to it, it's all shitty.' It's just another thing of living with CF. We'll never have children, probably never plan for retirement, never go scuba diving (it's really hard on the lungs), and never be able to fully digest corn (not really a big deal but super annoying).

To my friends, I don't want you to stop talking about babies or baby planning with me. I'm honestly happy for you. It's just these chemo meds that are messing with my mind, making me super emotional some days. They make me think the worst about everything and hopefully in 12 weeks, I'll be done with it all and can go back to being a bit more emotionally stable. Urgh emotions!

Wednesday, 17 February 2016

Cooking: Blueberry Lemon Mousse Cake

On my relaxing day Monday, I decided to make a dessert since we'll be home for several days (hopefully). I found some marshmallows from the summer and a recipe online to use up said marshmallows which was perfect. The recipe was for a blueberry lemon mousse cake and it was a complete disaster.

I honestly don't know where I went wrong. Ok, part of my going wrong was switching white chocolate with regular chocolate chips because the chocolate ended up overpowering the lemon and it doesn't go as well with blueberry. If you're like me and don't like white chocolate therefore don't have white chocolate laying around the house when you go to cook, I would just eliminate the chocolate rather than substituting it with regular chocolate chips.

My second problem was that the marshmallows would not melt for me. The recipe says to 'melt marshmallows in microwave or a pot over the stove, slowly.' I'm not sure if it's because I had regular marshmallows instead of the mini ones but they just wouldn't melt. I tried the microwave and the stove and they just formed a giant glob that wouldn't melt down. Until it burnt. I finally got some of it melted a bit but then it was impossible to mix evenly with the cream. It was a big sticky mess and there are hard marshmallow bits in the 'mousse' layers. Again, this recipe was not my thing.

My third problem was with the cake itself. This one is my fault. I've never cooked sponge cake before so I didn't know what I was doing. I followed the recipe but the problem with that is that it's British and all in grams but I didn't notice that when the oven said 200, it meant Celsius, so I put the oven on 200 degrees Fahrenheit. After 20 minutes, it clearly wasn't done so I left it in for probably another 20 minutes but I don't think it really cooked in the middle. And then I dumped the first layer of mousse on top as it was ready and I was worried it would set in the bowl with the marshmallow bits.

All in all, a complete diastor that we're stuck eating for the next few days. Not a highlight of my baking career. If anyone wants to visit to help us finish our half-cooked blueberry chocolate mousse cake, you're more than welcome!

Cake layer: Make sure the temp is actually F and not C!
Chocolate ready to go.
Marshmallows ready to be melted. Except they refused to melt. Stupid marshmallows.
Chocolate layer. It's actually delicious on it's own.
Blueberry layer. Also delicious on it's own. Perhaps I just need to scrape off each layer individually.
It actually layered and set nicely. Too bad it taste weird all together and the cake bits aren't completely cooked.
I will eat it anyway.

Tuesday, 16 February 2016

Relaxing days

I've had a few low-key days since being home from the hospital. Except for skiing on Sunday which was fantastic. I almost went again on Monday but then my body and common sense took over and told me to stay at home. I'm trying really hard not to overdo it.

Skiing was fantastic on Sunday. Mom and Amy drove up to join me which was nice to have company on the hill. It was freezing but with enough layers, we barely noticed. Until our toes fell off. Or in Amy's case, lungs seized up. I am not the only one in the family who is stupid about overdoing it. I clearly learned from my older sister who refused to be left behind on a ski day even though it was -18 and her lungs hated everything. I remember those days with the opposite of fond memories. When she had a coughing fit/asthma attack on the chair lift, I was so thankful for my new lungs. Even with the cancer, it's better.

I had my pfts today and I was a bit worried that they would be down since my x-ray showed some spotting on my lower lobes that 'can't be said isn't pneumonia' but they were actually up a little bit from last month. So yay to that! They still aren't where they were back in July-Aug but I'm not sure if I'll ever be up to that again. At least they aren't declining anymore and maybe they will go up again once all the lymphoma spots are gone.

Off we go!
It was cold.
Amy zooming along.

Friday, 12 February 2016

Home again!

I'm home! That was a very short hospital stay. They let me go yesterday but by the time I got out of the hospital, the pharmacy was closed so I had to stay in the city for the night so I could pick up my medication this morning.

My cultures were negative and my white count was rising so there was no point of me continuing on IV antibiotics. The only questionable source of infection is from my x-ray where the technician 'couldn't rule out pneumonia' in my lower lobes. However seeing as I don't have much of a cough or any pneumonia-symptoms, they are only treating that with a few days of oral antibiotics.

So while the week in Halifax was not successful in keeping away a fever, it was a short hospital visit. Tuesday was absolutely terrible. The fever chills just destroy me, I get lightheaded and have no appetite. I spent most of Tuesday staring at the wall just trying to get warm. It's amazing how I can go from having some discomfort from bone pain on Monday to being incapable of standing up on Tuesday to feeling pretty much okay on Wednesday.

I'm feeling okay now. A bit tired, which isn't surprising but my jaw and leg pain have subsided which is excellent. I'm now prepared for the two emotional days I seem to get around this time. But after I get all my emotions out, I should have a week of feeling great just in time for cycle #5. It's amazing how predictable all these side-effects are as the chemo meds work through my body.

In related news, Amy is also home today! Like me, she was discharged yesterday but we ended up being her ride home so she was stuck in the city last night. We ate pasta and watched TV as a celebration.

Wednesday, 10 February 2016

Back at the VG

Well, the plan of 'come to Halifax for bloodwork and observation to avoid being admitted' didn't work. It lasted one day. I'm back in the hospital.

Everything went smoothly on Monday, I had bloodwork done at home and then we raced up before it started to snow for my afternoon appointment. I got fluids and was sent on my way.

Monday night, I started getting bone pain in my legs and face. Tylenol helped a bit but it doesn't do the job 100% so I spent most of the night tossing and turning, trying to get comfortable but feeling worse and worse. I thought that since I was up and drinking lots of water than I wouldn't get a temperature. Silly me. I managed to crash out for an hour and then woke up at 8am with the chills. 

So, off we went to the emergency department in the snow which was thankfully dead. I didn't have to flash my cancer card around to jump to the front of the line. Yes, there is an actual cancer card. It's yellow. They took blood and then started me on saline fluids and antibiotics.

I'm now admitted back at the VG until my white counts come back up.

I'm feeling better today than yesterday. I was a bit of a mess yesterday but the nausea, lightheadedness, and a lot of the pain seems to be going away. I'm sure all the fluid I've been given along with the unit of blood I got last night has helped.

Saturday, 6 February 2016

Playing dressup.

I took my 'new' wig out today for the first time (I managed to wash out most of the ammonia smell from the dye) to go grocery shopping - it's as exciting of an outing as I'm getting these days. As I was deciding on which wig to wear this morning, I was thinking about how funny it is to be choosing my hair every time I go out.

I tend to just wear a toque or scarf around the house as the wigs get itchy after awhile. I have a few sleep caps that are hideously ugly but very comfy so my head isn't cold while sleeping. They also prevent the itchy feeling that I get from the pillowcase. I'm slowly getting use to the feeling of my bald head on the pillow but it's more comfortable to start out with a sleep cap even if I've thrown it off by the morning. Hopefully I'll get use to the feeling of the pillows by the summer as it'll be way too hot for a sleeping hat.
Very fancy sleep hat. It looks like I have a mushroom head.
But I digress...I was talking about how weird it is to be choosing my hair and look.  I know we all choose our looks to some degree with our hair styles and colours but wearing different wigs has made me realize there are looks where I feel like 'me' or not like 'me.'

For example, the wig in it's previous state 'wasn't me' but yet once it's dyed and cut a bit, it now is somehow. I don't think it should make that big of a difference, it's fake hair either way, but somehow it does. I love all of my wigs but when I'm wearing each one, I feel like I'm expressing a different part of me. I guess it's like the difference between wearing a sundress or cargo pants. Each outfit is a different way to express identity. The purple wig makes me feel more punkish and the long wig makes me feel more girly and like I'm faking being someone with long hair. It's all like playing dress-up in a new way that I'm not quite use to.

I actually found that the 'new' wig felt as though I just had my regular hair back. It actually felt more natural than just throwing a scarf or toque on my head because when I do that in public, I feel like 'cancer patient!'

It's amazing how losing hair can change that much about my identity. It's like I have to suddenly discover what looks I enjoy or don't enjoy. Although probably not so much anymore as I have four wigs and that's probably enough. Choosing wigs and new looks is something that sounds like it should be fun and probably would have been more enjoyable if it was done on my own terms instead of just being thrown into the 'now you have no hair' deep-end.

It's not just my head hair either, I've never felt an attachment to my eyelashes but now that I'm down to about five in each eye, I realize that it was nice to have some eyelashes. Same with my eyebrows.   I know it's been about a month and half since I started losing my hair but it still feels new and a bit like dress up when I put on all my 'lack of hair hiding makeup.'

I've never been a make-up person and now I've spent more time on make-up in the past month than I have my entire life combined. I'm trying to learn how to best put on eyebrows before all the hair falls off. If I ever look very surprised or angry, it's just a bad eyebrow day...I'm still getting use to it.

Friday, 5 February 2016


For those of you who are wondering, Amy is still in the hospital but looking to get out on Monday or Tuesday (but don't say that too loudly otherwise her body may revolt). She's started some of the transplant pre-testing over the past week and will have a few more to do once she is out of the hospital (TB test, etc...).

Because this is my blog, I'm going to turn her being tested for a transplant and officially being sick about me. Because it's freaking me out. I'm sure it's freaking her out too but you would have to ask her about that.

Amy has always been the 'healthy one with CF.' The one who is stable and able to hold down a job and never gets sick enough to be hospitalized for very long. I was always the one in and out of the hospital with infections which she somehow managed to avoid a lot of those. Now she's becoming the one that needs a transplant and all I can do is watch helplessly and give terrible advice.

Rationally, I knew that she wouldn't stay healthy forever and this past year has been particularly hard so it's not a big surprise that the time has arrived but I wasn't ready for it (again, making this all about me even though she's the one currently in the hospital). I'm not ready for my big sister to be sick and be down to a life expectancy 1-3 years. This day wasn't suppose to happen. 

Amy's always been my sounding board, the person I call immediately after Isaiah (or sometimes before) when I'm having a panic attack or have some weird symptom. She's the one I send pictures to of my rashes and bumps to get an opinion and who I describe in way to much detail about bowel movements. And now she's sick and my brain leaps to all the terrible scenarios where she doesn't get a transplant and dies and I'm not ready for that. Not that I'll ever be ready for it but I wasn't ready for the feeling of "wow, Amy is not bouncing back from this one like she usually does."

What a terrible feeling to have. As I'm sure a lot of you already know. It's a weird role reversal, not that I'm about to be nominated as 'the healthy one with CF' at any point soon but I'm not use to being on the sidelines and watching other people be sick. It's terrible. Not that being the sick one is any fun either.

I have nothing really else to say. This is all very fucked up.


I got a haircut yesterday! Ok no, my wig got a haircut. But it was on me at the time and I was at the hairdresser so it was a bit like getting a haircut, but not. It was all very strange. 

I've been playing phone tag with the hairdresser (yes, a regular hairdresser, the woman from the 'look good feel better' session would be scandalized as she believed only wig specialists should cut wigs) for awhile and she had a cancellation yesterday which meant that I had to put on 'being in public' clothes and leave the house. It felt nice to be doing something a bit normal besides trying to fight off a headache, even if that normal was having my wig cut.

I took in the real hair wig that I had been given that I felt looked funny on me. I'm not sure if it was the blunt bangs that stuck out or the massive amounts of hair but it just seemed a bit off and I haven't been wearing it. I figured there was nothing to be lost by having someone have a go at it with scissors if it meant I would wear it.
The original wig. Very 80s.
The hairdresser felt that the wig had once been longer and that someone just cut directly across the bottom and again at the bangs which was why they stuck out funny. She spent a lot of time straightening it and then taking off pieces at a time to give it a more layered look. It felt like she took off half of the wig by the end, the floor had hair everywhere. It really was like an actual haircut except that if she screwed up, it wouldn't just grow back.

After the cut.
I still wasn't big on the colour though (I'm too pale to be a blonde) so I bought some dye even though I was warned that it might turn out funny. The risk was that even though the wig says it's human hair, sometimes they lie (shocking!) and the synthetic fibers wouldn't hold the dye resulting in a half-dyed look.

I opted for redish. Now I can be a brunette, red head, or purple.
Post-dye drying. It looks like a small dead rodent.
It worked! Success! It must be all human hair! The dye held and I think the colour turned out great. It's not super red which is good but different enough from my other wigs to provide some diversity. Now I'm going to be even more undecided which hair to wear when I go places.

A new look option for me! Much like my old look when I had hair.

Wednesday, 3 February 2016

Groundhog day cards.

Happy Post-Groundhog Day!

Here are two Groundhog Day cards I made. Although the one on the right for Amy ended up being a combo "Groundhog Day/Hope You Get Out of the Hospital Soon!" card.

Chemotherapy #4: Halfway there!

I had my 4th chemotherapy session yesterday. It went as well as can be expected. I saw the doctor and then sat around for the day having medication pumped into me.

No one is pleased about how much my white count has continued to drop after every chemotherapy session bringing with it fever, infection, and hospitalization. So the plan for this round is for me to return to Halifax on Monday and go to the outpatient clinic every day next week to get bloodwork and a bolus of saline (a litre of saline) so I'll stay hydrated. They're hoping this will prevent me from getting a fever although I really think they just want me close by when/if I get one. It's happened 3/3 times so far so I'm not super hopeful that this plan will work to prevent the 3am fever. But, maybe!

The results of my CT scan came back and everything is looking good. Yay!! I didn't see my regular doctor so the doctor hadn't read my scan before he saw me but skimmed the report while I was there and said the news was all positive. The spot on my right lung is gone as is the one that was between my lungs and liver (I didn't know there was a spot between my lungs and liver). I asked about the spot that was between my lungs and he said there was no mention of that one but that it may be the spot that the current report described as 'between lungs and liver' instead of 'between lungs.' Apparently there is no standardization on radiologist reports which makes zero sense. Either way, there was a spot and now it's gone. And the nodules on my liver and left lung have shrunk.
Hurray!!! Yay science!! This isn't for nothing!
Yay drugs that are working!!
After the chemotherapy medication, I had my second spinal tap. The only difference this time was that the doctor didn't take a fluid sample. My last sample was negative and I guess he wanted me to have a break. It was still very painful but since I knew what to expect, I was much less anxious and it didn't seem as bad. Maybe by the 6th time it won't hurt at all.

Today is my resting day to try and avoid the headaches caused by the spinal tap. Caffeine, salt, staying hydrated, and not moving is suppose to be the key of keeping the headaches away. That means I'm drinking lots of coffee while laying down for most of the day today looking at the messy house. It'll have to wait for another day unless the cleaning fairies happen to show up before then.