Weekend!

Hope everyone had a great weekend! The CF research walk went well! We had a great turn out and the rain held off. I didn't win the weekend away to St. Andrews but it was fun regardless.

We spent Saturday selling all of our stuff at Mom and Dads which raised over 1000$. Thanks to everyone who stopped by!

I'm now exhausted from the weekend and heading off to bed to sleep for several days.

Just kidding, bloodwork to be done bright and early! The whole 'one month' plan lasted less than a week.

18 months post-transplant!

It's my 18 month transplant-versary! Woohoo!!!

I heard from Toronto and I'm approved to go up for my assessment at the end of June. I can also stop my antifungal and antibiotic, yay!! (this does mean that I'll need more bloodwork as my anti-rejection levels change with the stopping of the meds but I'll take it.) The team there is planning on sending me to the oncology team at Princess Margaret (the cancer hospital in Toronto) when I'm there for a second opinion on my cancer.

Does that mean they don't trust the Halifax team? Or do they just want to hear from their own people? Either way, I guess it can't hurt and might be nice to talk to a doctor who has actually seen this type of cancer with someone post-lung transplant. I'll have had my PET scan and follow up appointment with Halifax at that point so hopefully they'll have all the latest information. Not sure what I'll do if the doctors disagree on a follow up treatment plan though....

A few weeks ago, my "Facebook Memories" reminded me of how last year I cycled 40km from Toronto to Oakville. It's a great memory but also annoyingly reminded me that I'm not positive I could do that today. Stupid cancer, I'm not in the physical condition I had imagined I would be once I started recovering, post-transplant. And I had been getting to a really good place physically before I got cancer but my low hemoglobin in September brought it all crashing down as it's hard to do much when you feel faint upon exertion

After all the chemo, fevers, and inactivity during all my hospital stays, it seems like I have to build up everything again. It's so much work and even harder when there is no gym in the house (I loved having the free gym in our condo building in Toronto). I mean, we do have weights and exercise mats at home but it's just not the same as an actual gym-gym with treadmills and rowing machines and people to secretly compete against and aspire to be.

Don't get me wrong, I'm still way healthier than I was pre-transplant. I mean, I can breathe and am alive so no complaints on that front. I just had somewhat loftier exercise goals post-transplant than I think were realistic. Although in my goal-planning, I didn't factor in getting cancer. I thought I would be running 10ks and cycling to Amherst at this point, training for a marathon, lifting huge weights, hiking mountains...realistic goals like that...

I see posts of people running 5km three months post-transplant and I don't understand how they do it. That would be amazing if I could do that now, at 18 months, so I've decided that is my goal for the summer (if I can manage to run without busting up my knee again). Not even to run in a event anywhere, just to run for myself would be fantastic. We'll see how well that works. First I need to fully recover from my face plant a few weeks ago (yes, I'm still aching, my chin has healed but my ribs still hurt).

I did manage to go on a little celebratory hike today before picking up Isaiah from the airport. I could feel that it was humid and my lungs weren't a huge fan but I could breathe! It felt wonderful. When I compare where I was two or three years ago to now, it's basically indescribable.

This is why we fundraise. To support research for CF infections. Research and funding for transplants. Research for CF related cancers. Research for CF related diabetes. Funding for CF clinics. Funding for patient support systems. Funding for organ donation awareness.

All without out, I wouldn't be here today enjoying this weirdly humid but beautiful day.

Cooking: Baked Egg in Avocado

Before Isaiah left on his trip, he bought a ton of discounted avocados and then jetted off to Ireland leaving me with a fridge of avocados to eat. Since mashed avocado on my sandwiches and hamburgers wasn't using them up fast enough, I decided to try the seemingly popular "baked egg in avocado" for breakfast the other morning. I've seen this recipe everywhere online, especially on lists like "top 10 gluten free breakfast ideas" or "10 things you didn't know you could do with a avocado."

It's a good idea. Avocado, egg, bacon, sea salt, how could it be bad? Well, it was weird. It kind of fell flat for me. It was just...weird. I'm not sure why it's so popular. I have a suspicion that people share recipes on list-sciles without actually trying them first.

My other problem with the recipe was that, despite my scooping out a bunch of the avocado to make room, half of the egg white fell out before I could get it in the oven. I should've scoped out more but then it would've been less of actually eating avocado and more like I'm just baking a egg in an avocado shell.

I would rather just eat bacon and eggs.

If you have large eggs, you need to scoop out more than this otherwise egg will go everywhere.

Egg pre-baking. I fried up bacon separately.

It looks so delicious! Too bad it tastes weird.

Fundraising!

Hope people had a good long weekend! I spent it spring cleaning which is about as exciting as it sounds. I took a bit of a break on Sat to go to the beach and put my feet in the water. And then immediately put my feet back in the hot sand to warm back up. I was feeling pretty optimistic when I put on my bathing suit that morning.

Even though spring cleaning is annoying, it is nice to have a clean house. The only annoyance is a pesky mouse that's been skittering around. I cleaned all the cupboards, put everything in containers and totes, and hadn't seen any signs in several days so I thought maybe it just went back outside on it's own (this weekend has been full of failed optimism).

This afternoon however, it dashed out from under the oven when I turned it on to make cookies causing me to scream a bit louder than I'd like to admit. I tried fleeing the house from it but then it started to rain so that didn't work so well. On the plus side I now have about 5 dozen pumpkin cranberry cookies ( I decided it was time to cook up the last squash we had saved from the fall, cold cellar FTW) if anyone wants to stop by.

Mom and Dad are having a yard sale on Saturday as a fundraiser for the CF walk on Sunday. So in my cleaning I've also been sorting stuff to get rid of. We have such a big house now that things tend to pile up and, seeing as when we move again it most likely won't be into a 4 bedroom house, I would rather not accumulate too much.

If you're in the Petitcodiac area on Saturday, come to the yard sale! Petty is having a village-wide sale that day so even if you're in the surrounding areas, it may be worth the trip.

A unicycle!

Also, a reminder that it's the last week if you want to donate to the walk for CF research. We would all really appreciate it! There are also tickets for sale for a night and dinner at fancy places in St. Andrews, NB if you'd rather try to win something with your donation instead of getting a boring tax receipt. The tickets are only 5$ and the draw will be on Sunday. It's a great prize for anyone in NB or for anyone who knows someone in NB. I bought a whole bunch for myself so I should actually stop advertising them to give myself better odds. But still, message or email me if you would like one and I'll put your name in the draw!

Here is the link if you want to donate to the walk! Let's raise some money so we can research the hell out of CF! And by we, I mean the scientists, not me personally. Although I have been part of a few research studies. So I guess I do help out from time to time. Big thank you to everyone who already donated!

Win dinner and a night away!

Cooking: Quinoa Stuffed Peppers

I made a fantastic supper tonight. Stuffed peppers. Yum!

This morning I cooked up some quinoa in broth and while that was boiling, fried up a carrot, garlic, and onion. I threw in some leftover cooked chicken and when the quinoa was done, mixed it all together with some of David's tomato sauce, salt, pepper, basil, and cumin. Then I stuffed it into the peppers. I was just going to do two but then I made too much filling and ended up with three.

I wrapped the peppers in foil and put them in the fridge for the day. This evening I threw them on the BBQ for 15 min (rotating every 5 min or so) in the foil. I took them out of the foil for the last few min just to get a pretty char on the sides. This worked best for the pepper that was cut lenghtwise, the ones that were stuffed from the top threatened to spill the filling out when I turned them on the side so that didn't last very long. I mostly just charred the bottom of those. I would recommend cutting lenghtwise for the BBQ for a more even cook. I think cutting from the top would work well if you're going to bake them.

It's so pretty.

Transplant clinic appointment.

My transplant clinic appointment went well. I was clearly nervous for it as I had a bunch of dreams the night before where I was either late for the appointment or that they had hospitalized me for the day. They were not pleasant dreams of me running through the commons trying to get to the hospital.

My lung function was up a bit from last week but still down overall. I took some Tylenol beforehand thinking that might help but I'm not sure it did. It still hurt when I exhaled quickly so I don't think I got as good of a test as I could've. It didn't help that they use a hand held spirometer in clinic which I think is less effective as doing the tests in the spirometry box.

The doctor wasn't too concerned about my numbers as I told her about my fall last week. She didn't send me for an x-ray as she said that even if my rib was cracked, they couldn't do anything about it anyway so as long as it was slowly feeling better, she was okay with that. I did get a call from my Toronto coordinator asking why my numbers were down so much. Oops.

My aerosol mask has been stopped. Hurray! I can now, once again wake up and just roll out of bed without spending a half hour doing a mask. The doctor wants to stop my antifungal and antibiotic but she needed to confirm with the Toronto team first. She also restarted a few of my other meds that were stopped when chemotherapy was started. The only other change is that after next week my bloodwork will be done once a month. Yay for less pokes!

All in all, a good clinic visit. They say I'm ready to visit Toronto for my year and half assessment so now I wait to hear from Toronto about a date. It was nice to have a hospital visit that was routine and a bit boring.

Getting blood drawn

I'm still in Halifax hanging out, napping, reading, it's pretty great.

I did have to get blood drawn yesterday since it was Monday so I choose to go to the Bayer's Rd clinic. I thought about going to the one at the Halifax Infirmary but that one is technically for people who have clinic that day and I didn't want to show up at 8am only to have them send me elsewhere. I thought Monday morning's in Springhill were busy, I should've expected that Halifax would be worse. It was a zoo. It was like being back in Toronto.

I waited for over an hour to go in and then waited some more by the urine bench. I told the phlebotomist to take the blood from the back of my hand because it would be easiest even if was more painful. She looked at my (still scrapped up) hands and decided that was a bad idea and that she should poke around somewhere else. After looking for a bit, she choose a tiny little vein in my right arm, said, "I think this vein will roll on me, I'm not sure if I can get it but I'm going to try."

To which I responded, "Nope, I don't think you will, my veins always roll, you should go to the back of my hand."

Her: "I think I should try there, even though I don't think I'll get it, it feels like a rolly vein."

Me: "Just go the back of my hand."

Her: "I'm going to try, it'll be better if I get it."

So she tried.

And big surprise to all, the vein rolled, and even with much digging, she didn't get any blood.

Her: "As I expected, the vein rolled."

Me: "OF COURSE IT DID, GO ON THE BACK OF MY HAND"

Her: "I think I"ll go on the back of your hand."

She then filled up two gloves with hot water, like water balloons, set them on my hand to get the veins to pop, and called in the student to help her with the vials. Everything she should've done at the beginning. It worked wonderfully. One more poke, five filled vials later, and I was out of there.

Getting blood drawn from the back of my hand is more painful but at least it only takes them one easy poke so that's why I prefer them to just do that from the start. It saves them digging into my scar tissue for 10 minutes. If only they would listen to me.

Baby Blanket!

Look at one of my projects! I gave it away today at the baby shower so I can finally show it somewhere other than twitter.

The 'material', aka fuzzy pjs I found second hand.

That square didn't cut quite like I hoped.

Squares cut! (I may have more than one blanket on the go)

Sewing them together.

Figuring out how to put them together.

Machine quilting because my hand kept cramping from the chemo meds.

Hand sewing the edging (this pic may be of another blanket currently in the works) 

All done!

All wrapped with my fancy homemade wrapping paper.

Pfts suck.

I had my pfts yesterday and they did not go very well. Mostly because it hurt when I had to inhale and exhale quickly so my fev1s were terrible. I haven't been doing them at home either because it hurts so I have no comparison as to whether the drop at the hospital would be the same as here. The positive thing that isn't making me panic is that my fvc (total flow volume), done with a slow inhale and slow exhale, was actually up a little bit so my lungs are getting around the same amount of air, I just can't exhale quickly due to my bruised ribs.

I have clinic next Wed where I'll repeat my fev1s so hopefully I'm more healed by then and can get a more accurate number.

I was feeling good yesterday so after the pfts, Isaiah and I went for a walk around the bird sanctuary where we saw a deer and lots of birds. I continued to feel good once we got home and did way too much around the house.

I'm paying for it today. I woke up with the chills and a lot of pain. I took a tylenol 3 and went back to sleep, waking up with an almost-fever. We debated if I should go to emerg and I gave myself until the Tylenol left my system. After the 4 hours and eating food, my temp stayed down so I've stayed home. I'm feeling a bit better but haven't done much of anything all day.

What is this! I know I still have the chemo meds in my system as I still have mild jaw pain and keep getting hot flashes but a fever at 3 weeks post-chemo is going too far. Too far, body! Enough of this nonsense.

I'm driving Isaiah to the airport tomorrow for his big birthday trip and am spending the next few days in Halifax so I really need to be feeling better.

Spot the deer!

It's Nurses' Week!

Happy Nurse's Week! I told you there was a week for everything. I know I complain on twitter a lot about my nurses when I'm in the hospital but that's mostly because it's a surprise when I get a terrible one. I must say, after all my time in and out of the hospital and seeing so many different nurses in a variety of settings working long 12 hour shifts, I'm very thankful that the majority of nurses are so amazing. Everyone at the hospital is usually fantastic but the nurses are the ones who have to deal the most with the tired, sometimes stressed/angry, families who don't understand what's happening. And their usually understaffed

They're the ones left in the room when the doctor rambles off a diagnosis or care plan and suddenly leaves. They're the ones who are there when a doctor pulls a PICC line, puts on a terrible bandage, and leaves. Or when the doctor pulls out a feeding tube, blood going everywhere, and leaves the room. Or when a doctor puts in IV, blood going everywhere, and leaves the room (I've had quite a few incidents of doctors doing procedures, making a mess, and just leaving). Nurses are the ones who have to deal with 3am bloody wounds. And the ones who have to inspect your poop when it's red and runny before deciding to call the doctor.

Of course, like any profession, not all nurses are the same. I mean, I've seen the range of nurses from the burnt-out nurse to the one-year-from-retirement-doesn't-give-a-damn nurse to the touchy-feely-hug-everyone nurse to the hands-off-super-efficient nurse (my favorite) to the tells-you-horror-stories-about-previous-patients nurse.

I think I may be slightly scared as I remember the horror stories more than the positive ones. Like the nurse who told me to "just relax, it's over now" instead of giving me medication while I was having a panic attack after a terrible scope. Or the ones who yell at my visitors. Or the ones who specifically go for a vein I say is shot and, big surprise, they can't get blood or an IV. Or the ones who wake me up every hour of the night for no reason other than making sure I haven't somehow died (I know this is obligatory and not their fault but I'm still mad about the lack of sleep while in hospital). Or the ones who drank coffee in front of me while I had my trach and hadn't eaten or drank anything in over 20 days (I'm still bitter) and felt like I was dying of thirst. I could probably go on.

But I've also had amazing nurses who've taken time out of their day to wash my hair. And ones who encouraged me to stand up on my own after the transplant. And ones who snuck me IV supplies so I wouldn't have to pay for them. And ones who wiped my butt after my transplant. And ones who let me have more than two visitors at a time. And ones who have spent a shift trying to get the bleeding from my chest wound or PICC line to stop. And ones who have given me anti-anxiety meds without me having to ask twice, or once in some cases. And ones who listen when I say a vein is shot and try where I suggest. Amazing nurses who can get an IV in first try. And ones who chase down doctors to get me stronger pain meds. And stronger sleeping meds. And to fill out discharge papers (nurses spend a lot of time chasing down doctors for me). I could go on.

Thank you to all the nurses who've been there for me: pre-transplant with CF problems Halifax Infirmary; pre-transplant Toronto at St. Micheal's and the Toronto General Hospital; post-transplant in the ICU, Step-Down ICU, Transplant General Floor, Transplant Out-Patient Clinic, and Homecare. And with chemotherapy: the nurses at the VG at the outpatient hematology unit and the inpatient hematology unit; the ones in Amherst emergency who had me for a week and then had to later unblock my PICC; the ones at Springhill who drew my blood when VON didn't show up; VON nurses when they did show up; and the ones in emerg in Halifax for all the times I showed up on the edge of tears, shaking with a fever, who so patiently wrapped me in all the warm blankets and brought me buckets of ice water.

THANK YOU for taking care of me!!! Happy Week of Celebration for all your hard work!

An IV pump to remind all the nurses of the beeping.

I'm still here! I've had a rough few days since being home. I had my PICC line pulled (yay!!) and made it home on Friday. I was psyched to be home even though I was having my emotional chemo side-effect days on Friday/Saturday where it took very little to make me cry. I cried at anything. I mean anything. Buying the wrong flavour chips, not being able to find a blanket, dropping my pills. It was buckets of tears for two days.

And then, on Saturday evening, while carrying in the wee little plants that I'm starting, I tripped and faceplanted on the concrete step. Plants went flying, my chin bashed into the step, and my ribs seemed to have caught on the corner.

So that helped my emo chemo days. Isaiah had to clean me up between my tears and threats when he put alcohol on my scrapped hands. I was vigilant with ice packs and I think I'm okay overall. I have a giant goatee bruise and my ribs still hurt when I move but I'm slowly feeling better.

I have a lung function test on Friday and I'm a bit nervous as to how it'll go seeing as it hurts when I breathe super deep. I have three days to heal but I'm not sure if it'll be enough. I may have to drug up beforehand. 

Goodbye PICC line!

 

Goatee bruise! I'll save you the trauma and not post the pic of my bloody hands.

Goodbye 5A!

I should be heading home today! Everything is looking good. Two of my antibiotics have been stopped as my cultures remain negative. The hematologist is now just waiting to see if the infectious disease doctors want to send me home with any new medication or just send me on my way.

Hopefully my PICC line can be pulled and then my right arm will be free! The downside will be that I'll have to be stabbed for my weekly bloodwork but the upside will be being able to submerge it underwater again. I might be allowed to shower again too now that chemo is over, I need to check on that one. That would be another very welcome change to my life.

Fingers crossed that this has been the last hospital stay for a very, very long time.

Thanks to everyone who fed and entertained me this week in Isaiah's absence!

Goodbye IV pole!

Hospital stay in 5A

Still hanging out in 5A. Nothing new has happened besides the doctors trying to bump up my immune system. I got two units of blood this morning as my hemoglobin had dropped so much (thank you blood donors!). Hopefully that'll give me some more energy. My cultures have yet to return which is good, the longer they take to come back, the greater chance that they'll end up being negative. The only confirmed swab was a neg for shingles, which does not surprise me. Flu and infection are still pending.

The infectious disease resident today was very interested in the lingering rash on my hands and lips. It feels like a terrible sunburn but as I was barely out in the sun last weekend, I'm not sure how that even happened. I keep trying to remember a change in our soaps, creams, or detergents, but nothing has changed. The resident went off to prescribe me a mild cortisone cream that is suppose to help. I hope it takes away the itchiness at least.

I'm still napping a lot thanks to the pain meds, benedryl, and the inability to go longer than a hour without someone coming in to check on me but feeling better overall. My appetite is back up a bit which is good as long I can get some food from the outside.

Yay blood!

Fever time #8

[I'm quite spacey on Benedryl and pain meds so please be patient with all my errors or half sentences.]

I'm back in the hospital for *hopefully* the last fever cycle. I came up to Halifax on Sunday, spent most of Sunday napping or staring blankly at things and then the fever hit Monday morning. Right as scheduled. It was terrible this time (not that any time is fun) but it seemed harder to get myself up to go to the hospital than the times before. Isaiah is stuck in Springhill this week so I stayed at a friends near the hospital and she had the honor of taking my whiny self to emerg at 5am. I should've gone earlier as I was up for most of the night mostly because I was anxious about getting the fever but then couldn't sleep because of the actual fever.

It was a terrible cycle of waking up, checking my temp, oh its 37.6, sleep for 20 min, wake up again, check temp, oh it's 37.8...and so on. Until it hit 38 and I started making an attempt to get up. But then I couldn't physically get out of bed and would fall into a half-sleep. It was only when the chills turned to hot flashes that I was able to function a bit better and get up. It makes me wonder what people do if they live on their own. I guess call 911.

I slept most of yesterday sleeping while all the doctors came up with a plan. My blood pressure was super low when I went in so the floor didn't want to admit me until I had been stable for 12 hours. Meaning I spent last night on a terrible emerg bed. Thankfully it was pretty quiet overall, only a few chatty nurses waking me up once in awhile. At least no one was screaming in pain.

I've had low blood pressure almost every other fever cycle so I'm not sure what made this one different but the internal medicine doctor was obsessed over it. He had them pump me full of fluids and albumin (a blood product that is suppose to help the body absorb hydration) and when I didn't pee instantly, he threatened to put in a catheter. I kept telling him that I peed before I got there and I'll go again in a bit.  Thankfully I was able to pee normally again so he stopped bringing it up.

I was brought over to the VG this afternoon. On the 5th floor which is the same as last cycle but different than the other ones. The doctors have me on some intense antibiotics even though my cultures haven't returned yet to say if I have an infection. The infectious disease doctor really wanted to pull the PICC line in case that was the source of infection/fever but she agreed to wait until the cultures return before touching it seeing as my cultures have been negative my last two admittance. The PICC has lasted this long that I don't want it to be pulled two days early and then be stuck with nurses trying to put IVs in me. That never goes well.

Now I'm just waiting for my white count to come back up and the pain to stop (my back pain has been replaced with the femur bone pain).

Always with the gross stains on the ceilings.