My back hurts.

My back hurts.

I've been icing it for two days and it still hurts. At least Tylenol helps so I can get out of bed for a bit.

That's all. Just though I would remind everyone that chemo is terrible.

Chemo #8 is done!

Chemo cycle #8 is over! Well, okay no, the cycle has actually just started, my last chemotherapy session is over!! I have a PET scan booked for the beginning of June and then we'll find out how well this worked. My CT scans were showing that the spots were reducing but now we want them all to be gone. There is nothing to do but wait. If nothing else, I get the month of May off to recover.

Yesterday went okay overall. The chemotherapy part went smoothly, the intrathecal wasn't quite as good. It took the doctor two attempts to get into the spine and it felt like she hit a nerve as I could feel a twinge in my hip. The actual procedure was no more painful than usual but my back started hurting much sooner than it has previous times. It's also hurting more today so that makes me feel like my recovery time is going to be longer this time around.

At the hospital, there is a 'end of chemo' bell you can ring in a little room on your last session if you want. I heard someone else ring the bell yesterday but I just left because I was tired and in pain. Also, it was the end of the day and the nurses wanted out of there as much as me.

However, I did get these lovely flowers and Starbucks as a celebration. 

Chemo cycle #8

Heading off to Halifax today for cycle #8 tomorrow! The last one! Yay!!!!!!!!!! Well, assuming that my PET scan comes back okay. But the last one for now, yay!!!!!!!!

I've been feeling good this past week. Minimal side-effects, the only issue I have right now is the lingering jaw pain and some new hot flashes. The hot flashes aren't great for sleeping but it's been getting better. Just in time for the new cycle to start.

I managed to get out for a few little hikes in the beautiful weather which felt fantastic. I also spent a lot of time outside reading my book which was also wonderful.

Amherst Bird Sanctuary

Some nesting eagles.

Aging Gracefully

Hello friends,

A lot of us are turning 30 this year. If I have to read one more Facebook post about how old you are and how you don't want to leave your 20s, I may scream and then block everyone.

I don't often pull the 'I almost died from lung failure' or the 'I have cancer' card but honestly, I almost died from lung failure and I have cancer so I have no sympathy for your fears of getting older.

I get that you've reached a milestone in your life where you feel as though you may not have accomplished all that you though you may have at this point. Or you're scared that you're no longer in your 20s and have to seem like an adult. I get that in some ways. You're allowed to feel how you feel.

But really, just be happy you're alive and healthy. Or just be happy you're alive.

Embrace life. Embrace the fact that you get to plan vacations or pay off your mortgage. Or any of those things that seem so boring. Because I almost had a panic attack when I set up a disability fund at the bank and somehow ended up locking in money for three years because I'm not sure I have a three year life-expectancy.

So, when your 30th birthday, or any birthday, comes around this year, instead of panicking about getting older, be thankful for all that you have.

Because you really don't want the alternative.

Thanks.

Cooking: BBQ

It's BBQ weather! Hurray!


On the menu were steaks, bbq potatoes, and the last of the fiddleheads (just in time for some fresh ones).

The steak was marinaded in a black bean sauce with soy sauce and honey (not pictured). The potatoes and carrots were coated in coconut oil, salt, pepper, and rosemary. And the fiddleheads were fried with some coconut oil and ginger. Delicious.

Veggies! Yum!

Fiddleheads cooking away.

Potatoes cooking away.

Liver transplants

I will conclude National Organ and Tissue Donation Awareness Week by briefly mentioning liver transplants. Often people with CF need liver transplants due to years of damage from all the digestive enzymes as well as antibiotics. This is sometimes done with a lung transplant but can also be done as it's own surgery.

Liver transplants take between six to eight hours and are done in most major cities across Canada. Like a lung transplant, after surgery the patient is monitored in ICU for signs of infection and rejection. However, unlike a lung transplant, the patient is usually out of the hospital in 10-14 days. The success rate for a liver transplant is between 85-90% and the patient is on anti-rejection medication for the rest of their lives. 

Unlike lung transplants, liver transplants can be done from a living donor. Not everyone is suitable for this, it depends on the level of liver failure, but if a family member can donate, it prevents the person from having to wait on the long transplant list. For an adult, the right lobe of the donor's liver is transplanted. For the donor, it requires a five to ten day hospitalization and two to three months of recovery time. In a few months post-transplant, the donor's liver will regenerate to within 90% it's original size.

 

In the time period from 2011-2015, there have been 15 liver transplants in New Brunswick, 29 in Newfoundland and Labrador, 62 in Nova Scotia, and 8 in PEI. In 2015 alone, Ontario did 234 liver transplants, 57 of those were from a living donor. 

As of today, in Ontario, there are 220 people waiting for a liver transplant.

 

My obligatory pitch: If you know someone who is waiting for a liver transplant, who knows, maybe you can give them part of yours. Haven't you always wanted to save a life and be a hero? Why not sign up today to be a organ donor? And don't wait until you're dead! Donate some blood while you're still alive and save someone's life now. 

 

From all of us who've had our lives saved from organ donation, blood donation, and/or stem cell donation, THANK YOU!!!

Be an organ donor!

To continue with the National Organ and Tissue Donor Awareness Week, I was editing my transplant story today and came across this bit that I thought perfectly explained how amazing it is to have received lungs. It highlights how it felt at that time to have new lungs. Right now, at over a year post-transplant, the fascination of having new lungs has worn off. It's now my new normal to run across the street without having a coughing fit. It's good to read the stuff I wrote after the transplant as it makes me appreciate my new lungs all over again, even with everything that's currently happening.

"It was a bit odd that after so long of only thinking about my lungs, they had become the secondary concern. Not only because of all the other complications I was dealing with but also because, for the first time in a long time, I no longer had to think about them. I was on room air and able to breathe comfortably. 

My oxygen saturation held steady at 95-97% which blew my mind. I didn't even notice about how little I was coughing (not that I had the muscles to cough) until Mom mentioned how amazing it was that I could walk around the little hospital block without hacking. It's astonishing how fast my body adjusted. It was effortless to breathe for the first time in years, it was, and still is, hard to wrap my mind around the difference.

I can breathe without stress. I no longer have to think about it every time I climb a flight of stairs or run across the road. It literally saved my life.

All because a family decided that their loved one would be an organ donor."

Please donate. Donate blood and tissue now. Donate organs later.

National Organ and Tissue Donation Awareness Week

It's National Organ and Tissue Donation Awareness week! As though there aren't enough weeks and days for everything. However, I just thought I would mention it even though I know all of you are already signed up to be organ donors...right....?

Go do that now.

Actually don't even do anything.

Just text your partner or parent or child that you want to be an organ donor if you happen to die tomorrow. 

That's literally all it takes.

Right now.

Do it.

While you wait to become an organ donor after you die, you can help out people now while you're living by donating blood and/or registering to be a stem cell transplant donor. Right here.  I've received so much blood over the past two years that I probably have bits of anyone who is type A in my blood stream.

Stem cell transplants are much more invasive but can literally save someone's life. It can be a cure (even though they don't say the 'cure' word around cancer) for someone with cancer. As someone with cancer, thankfully it hasn't gotten into my stem cell at this point but if it does, I may find myself needing someone's stem cells. So sign up! You may be the one to save my life!

Ok, now that's over with, here are a few fun facts from the Trillium Life Network:

• There are currently 67 people waiting for a lung transplant in Toronto.
• 21 of those people are type A. 
• One person in Toronto is waiting for a lung and heart transplant.  
• There were 28 lung transplants in Toronto during Jan and Feb this year. 
• In 2015, there were 127 lung transplants done in Toronto. 

Drop those tidbits of information into a conversation this week.

And that's my spiel for the week. Donate things!! Harass your friends and family!

Happy Monday!

Hope everyone had a good weekend! I'm feeling much better, have stopped taking the pain medication and have a bit of energy back. It's amazing how just when I think that I have the cycles figured out, the symptoms change on me.

Isaiah and I went for a short hike yesterday looking for waterfalls. We were following vague instructions off the waterfall Nova Scotia website so only found one of the two but it was a gorgeous day to be traipsing through the woods following old four wheeler trails. We only found one waterfall but managed to find a lot of pheasants. They're so loud when they fly away.

I've been working on a few crafting projects that I hope to share with you soon. I just have to wait until after I give them to people so I don't completely ruin everyone's presents.

The waterfall we found. The picture doesn't do it justice.

The waterfall that we didn't find.

So we went to the Parrsboro beach for a walk.

Hey look, some driftwood.

Home from cycle 7.

I'm home! Although I still have drug-brain and find it hard to focus on very much. Last night went fairly smoothly, whenever I woke up in pain, I would get more medication which put me right back to sleep. It was pretty great. The doctor woke me up during my post-breakfast nap to tell me that my bloodwork looked fantastic and that I should get ready to leave. My white count is back to normal, my hemoglobin and platelets are also back to normal, and my cultures remained negative so there was no need to send me home on antibiotics.


After the paperwork was filled, I had a light lunch (my appetite is pretty low, I think because of all the pain meds), one last dose of pain meds was given, the weird subcut line was pulled, and we were off. I slept the entire drive home and again for a few more hours once I hit the bed. Now I'm just trying to stay awake until 930 so I may have a chance of sleeping through the night.

It feels good to be home and in my own bed. Now I just need to get rid of the pain and I'll be all set for my 'good week.'

Home tomorrow?

Looks like I get to go home tomorrow! My white count has bounced back lovely, my cultures have remained negative, and no more fevers. All good news. As long as I don't get a fever overnight and my blood work looks good, I'm out of here without home antibiotics.

The less positive news is that I'm having crazy back pain that started around 4am this morning. It's probably a side-effect from the GCSF (white cell booster injection). The silver lining in that is that they're very generous with pain medication on this floor so I've been in a drug-induced haze for most of the day.

They put in a weird line on my arm for my subcut injections (the ones that go just under the skin and not into a vein) which was suppose to cut back the stabbing in my arm. The nurse who put it in said the GCSF could go through it but that was a lie according to my evening nurse so I was still jabbed.  At least they can put the pain medication through it so overall I guess it did save some stabbing.

I got some more blood overnight last night which went routinely. The only concern on their part was that my back pain hit when the transfusion was happening so they were thought maybe it was a type of reaction. Seeing as back pain is not often a transfusion reaction and I kept telling them that my bone pain usually started around this time in the cycle, they relaxed a bit but did check my vitals a bit more frequently after that.

Aaand that's all the focus my brain can handle right now. I'm due for more pain meds in 10 minutes which will wipe me out for the night (I hope). Hopefully I can avoid terrifying dreams with them but it's worth being able to sleep pain free.

Blood going through the lines.

More blood. Thank you blood donors!

My subcut line and my stoned face. Clearly they were trying to avoid more bruising on my poor arm.

Hospital Cycle #7

The fever came early this time. I wasn't expecting it on Monday morning even though I kept waking up shivering and couldn't get comfortable. Of course I should've recognized the fever by then but it's  hard to be rational at 5am when you're high on pain killers, half asleep, and wondering why you're so cold. So I went back to a half-sleep.

Once I finally woke up enough to actually check my temperature, off we went to emerg. I got in almost right away, the doctor wasn't quite as helpful as the previous one had been but he was still pretty good. He got me started on fluids which helped my blood pressure as it had crashed out. It's amazing that I can go to bed one night feeling fine and then wake up with a fever, dehydration, and a low blood pressure.

It was the typical, answer the same questions a hundred times. Yes, I've had a double lung transplant in 2014. Yes, I now have a form of lymphoma. I had a fever. Yes, I realize that's tragic but could I please have an antinauseant so I don't throw up again.

Even with my handy printed paper with all my information about last hospital visits and my chemo information, they still made me go through my medical history. One of the internal medical residents could tell I was annoyed and tired by that point as I kept saying stuff like "it's all on the piece of paper I brought" or "it's in the chart."

After all the questioning and fluids, they eventually found me a room over at the VG. And now I wait, getting IV antibiotics, until my white count comes back up. I'm on a different unit this time as the one I'm regularly on was full and they wouldn't kick someone out for me. It's still an oncology floor so the nurses are familiar with most of the medication, it's quiet, and fairly clean. Minus the gross spot on the ceiling, I have no complaints with it. Well, that and the Internet is super unreliable on this floor. And the whole VG 'can't drink the water' complaints. So, the usual.

Fever watch for cycle 7.

Happy snow day to everyone in the Maritimes! The birds nest in the tree outside the house has a foot of snow on it. I hope there were no eggs in it already. If so, it was poor planning on the birds part.

We're off to Halifax again for fever watch cycle #7 once the roads clear up a bit. Hopefully fever watch will go as smooth as cycle 6 and I won't actually get a fever. I'm feeling okay overall, my back is much better this cycle than last, way fewer headaches and headrushes. My jaw is hurting a bit more today but so far everything else is holding up okay. And my hands haven't cramped once. Even with all the art and stuff I've been doing. Hurray! Stopping that medication seems to have done the trick.

I've been trying to be better at taking pain medication regularly this cycle and, no surprise, it helps. I'm not sure why I've been so sparing with them other cycles. Actually I do, it's because I'm super paranoid about becoming hooked that I don't want to take them. It's not like I haven't been taking pain meds previous cycles, I just only took them once I got to the 'pain is so bad I can't sleep or be comfortable' point which was awful. I really want to avoid that stage this time around. And I'm tired of being in pain so I've decided to risk a pill addiction and take some extra Tylenol.

Good morning, Springhill!

Playing with new art supplies

I've been laying low the past few rainy days. Well today was gorgeous but I still laid low, trying to avoid any more side-effects. My jaw is hurting but so far that's about it.

I got a new stencil from Micheals that I've been playing around with and spent Wednesday making cards with the new design. I'm not sure if it counts as your own art if you use a stencil but it's still fun.

Stencil with water colour pencils

Stencil with sharpie.

Stencil with paint.

Chopping everything up.

Making some cards!

Chemo Cycle #7

Chemo cycle #7 started yesterday! One left! Well, after I get through the next three weeks. My jaw pain returned before the cycle even started which is not a promising sign for things to come. Unexpectedly, I also had crazy indigestion last night after eating too much pie. This stuff isn't suppose to start happening for another few days!

Yesterday went smoothly. I didn't have any reactions to the medication and managed to get in a little Benedryl-induced nap which made the afternoon a bit less hazy. I had a friend hanging out with me for most of the afternoon so it was nice that my head was a bit clearer and I could actually follow the conversation.

Super-pump!

I got more clarification about the previous CT scan from the doctor. I saw my regular doctor so she had actually looked at the scan before the appointment. It's still all good news. The spots on my stomach and spleen were gone, there may or may not still be a small spot on my liver (it was hard to read), and there was one 5mm spot left in my right lung. Yay! All this pain is worth it!

The CT scan was done after cycle #5 so hopefully things have improved even more. The plan is to have a repeat of the PET scan a month after my last chemo to make sure it's all gone, sometime the end of May/beginning of June.

The other news from yesterday is that the doctor decided to stop one of the R-CHOP drugs due to the numbness in my hands. The numbness has been getting increasingly worse since the start of chemotherapy and apparently it can be irreversible. The pharmacist thought maybe they would just reduce the dose but since I've been responding well, the doctor decided to stop it all together instead of taking the risk of increasing the damage. I'm happy with the decision as the numbness is terrible and I'd rather it not get worse.

Medication going in.

I'm now laying in bed trying to rest my back from the intrathecal. I'm feeling kind of foggy so my goal of re-reading my bookclub book for tomorrow night may not come to pass. It may be a day of marathon watching Harry Potter movies instead. 

Fleeing Halifax yesterday!

CF walk for CF research

It's that time of year again where I harass everyone for fundraising money! I really hate doing this because I never support anyone elses walks or runs for other charities. So I don't really want to bug people for money as it feels really hypocritical. But if you were thinking of giving some money to the CF Foundation this year, why not give it through me and the CF walk!?

I don't need to go on about all the reasons CF is terrible. You know them if you read this blog.
But, in case you've forgotten, here are some of the reasons you should support CF research:

1) The life expectancy is terrible. It's getting better but mostly because people with 'mild' forms of CF are now being diagnosed which is pushing the rate higher.

2) The money from the walk for the CF Foundation goes mostly into research for things like new treatments, medication, and transplants. All good things that need to be researched and funded. They are making really good progress with new medication.

3) Not being able to breathe is the worst.

4) Lung transplants can be a life-saver but also a huge procedure. It would be better if people didn't have to go through it and could live longer with their regular lungs.

5) Not being able to digest food is no fun either.

That's my pitch, here are the links.

Sponsor the team!

Or sponsor just me!

Or sponsor Isaiah! (can you tell I wrote his blurb?)

Or sponsor Amy!

Abstract Art

I've been messing around with some crayon art again. I had a large canvas that I messed around on but I didn't like how it turned out and don't know how to fix it. So I moved on to the two smaller canvases that I had laying around. I like how they turned out. They're now hanging beside the watercolour pencil art that I made last week during my laying down 'chemo recovery days.'

Not sure what I'm going to do with them all but it was fun to colour.

Good use of my multi-picture frame.

The canvas that turned out weird.

Planning the next step.

Crayon art #1.

Crayon art #2.

Hanging on the wall.