Nothing new.

Well I haven't gotten any blood but I don't feel any worse so that's something not negative. I managed to get out for a little skate on Thursday and walk on the walking track on Friday which felt good. I had visions of going snowshoeing today in the fresh snow but I'm feeling a bit congested so thought it would be best to hunker down for the day. So instead I've read for most of the day. Not a bad compromise.

Nothing really new to update except that I'm trying not to think about chemo on Tuesday because that means another needle in the back which starts the entire process over again. If I don't think about it then it won't happen, right?

14 months lungversary!

My 14 month lungversary was on Tuesday. Happy 14 months to me! I didn't realize that it was my 14 month until about 10pm that night so while I'm still marking the date, it's clearly not become as big of a deal. Maybe after a year it's only the 'big dates' like a year and half or every year that becomes more important.

Although to be honest, I don't think I'll ever stop marking the date even though right now I feel much less like a 'transplant patient' and more like a 'cancer patient.' I've moved into a different group, hopefully for a short period of time, and everything involving my transplant and lungs have become secondary to talk about lymphoma and chemotherapy.

It's a bit strange that something so large in my life like a double lung transplant has taken a back seat to something but I guess that's what happens when cancer gets involved. Not that the two can really be untangled as the chemotherapy messes up my antirejection medication so I'm still being monitored very, very closely by the respiratory team in Halifax.

It feels even stranger to not identify as much with the cystic fibrosis part of my health/life. I mean, it's the cause of everything that's happened but I can breathe in the cold without my lungs seizing or coughing so everything else seems quite minor. It's like having cystic fibrosis no longer has any affect on me. Even though it still does. Very much. I still have to take all the digestive enzymes and vitamins and it screws up my absorption rates of all my other medication. It's in no way gone but I guess now that everything revolves around the transplant or cancer, it doesn't seem as important.

Anyway, yay to 14 months! I can't say I had a celebration, unless a celebration nap counts.

Home from the hospital.

I'm back home! After a gorgeous day on the ski hill last Monday, I ended up getting a fever overnight due to my low white blood cell count and spent the last week in the Amherst hospital. I spent a night in emerg before they found a bed for me where I hung out all week. I'm home now on a daily IV antibiotic with the VON.

I was surprised that the Halifax doctors agreed to let me stay in Amherst as they usually want me as close to them as possible. The argument was that the 'meds are the same no matter what hospital I'm in.' Which is true. And it was easier for Isaiah as he could be home (not that he has any problems finding places to stay in Halifax). However, after the past week, next time I'm going to push to be sent to Halifax.

Not just because the VG has the Internet and TV (I felt like I was going through withdrawal the first few days), but because it seemed like I spent the entire stay just waiting on the Amherst team to call the Halifax team to find out what to do. Everyone in Amherst was lovely but they simply just didn't know what to do with me. Hell, Halifax barely knows what to do with me half of the time.

They also refused to give me a blood transfusion even though my hemoglobin was/is below 80 which was super frustrating. I understand that it's due to the fact that the medical standards are that the person has to be below 70. However, my standard is now 80 due to the chemotherapy and all my objections of "Halifax would've transfused me twice by now" were met with a "well, we'll let the doctors know."

My hemoglobin level is still low and I got a call from the hematology nurse in Halifax this morning asking why I wasn't given blood and if the staff were aware that my hemoglobin was below 80 when they sent me home. Argh! I knew!! They knew!! Everyone knew!! I'm not sure what she expected me to do short of turning vampire and start sucking it from the closest person with type A that I know.

It's so irritating because other than my low hemaglobin, I'm feeling pretty good. I went skating today but had to stop after 10 minutes as I was feeling so light-headed. Someone give me blood so I can spend this week doing stuff before my next chemotherapy cycle. It's really too bad I can't write my own prescriptions.

So...next time (assuming that this annoying low white count-causing-fever cycle repeats itself in three weeks) I will be advocating to go to the VG, even though the water is toxic and the food is much, much worse.

The Watson Sister's Hospital Stay!

Hello! This is Amy filling in on the blog for Alley. On Tuesday, Alley had a temp of 39.5 and went to Amherst Emergency room after springhill kicked her out. She had blood cultures drawn and iv antibiotics started. She got admitted there, and has no wifi!! So that is why you have not heard from her, as she is currently in wifi withdraw. Her temp has been good ever since, but her blood cultures came back positive. She is hoping to be able to go home on Monday with home iv antibiotics. They also did a ct scan today to check on the cancer and if the chemo is working well, or if modifications need to be made.

I'm writing this from a bed at the Halifax hospital, as I am now admitted as my lung function is down and I too need iv meds. I can't let Alley have all the attention!

Cooking: Phyllo goat cheese pastries

I'm still feeling ok! The jaw pain hasn't hit me yet. Hurray! However, I have a massive blister on my foot from snowshoeing yesterday and I'm paranoid that it's going to become infected so I thought I should stay inside and out of my boots. I don't want to take any chances with my low white blood counts.

Instead of snowshoeing, I had a baking/cooking day. I made some cupcakes I had been craving and got soup ready for tomorrow evening. I also experimented with this weird goat cheese we had. It was peach pie flavoured and way more sweet than I had expected so while it was good on crackers, it wasn't being eaten fast enough for my liking. Instead of watching it go bad, I thought a dessert was in order. It helped that we also had some family stop in briefly for the afternoon who needed to be fed treats. Dessert experiments on family! Plus, how can you go wrong with goat's cheese and phllyo dough? You can't. Although next time I would probably make more pastry things with less cheese in each one.

Recipe:

Goat cheese
Phylo dough
Melted butter

Instructions:

Layer 3-4 squares of phyllo dough in muffin tin, spreading melted butter between each layer.
Insert a dollop of cheese in middle.
Pinch dough together to make a pouch, add more butter to hold together.
Bake at 350 for 10 minutes.
Enjoy!

Weird cheese that was on sale.

Conveniently already in the freezer.

Layered and pinched together waiting to be baked.

Cooling.

The lone survivor.

Snow!

I realized today how much I'm loving winter for the first time in years. I can finally do stuff in the cold without coughing or having my lungs seize as soon as I step outside. It's a wonderful thing.

I wouldn't say that I enjoyed the Toronto winters, in fact, they were pretty cold and terrible. There wasn't any real snow but the bitter wind was brutal for my poor lungs and body. I spent as much time as possible inside trying to find ways to avoid the outside. The few things we did outside were done on strategically nice winter days and mostly involved walking from one warm building to another (like at the zoo).

This winter is already so much better! Being able to breathe while I do things feels fantastic. I actually want to go outside and be active in the cold. I think the amazing jacket I got for Christmas that keeps me toasty warm helps but these replacement lungs are really doing their job well. I'm still not as physically strong as I would like since being out of the hospital but I'm getting there slowly.

Isaiah and I have been out for a few more little snowshoes around the Springhill trails. The snow we're getting tonight will be great for snowshoeing and for the ski hill which Amy and I are hoping to throw ourselves down on Monday.

I'm really trying to fit as much in as I can before the side-effects kick in. Ideally they would stay away and I'm a bit hopeful that it will be better this time as I'm currently day four post-chemo with day three on the white cell booster shots and feeling good. My only side-effect so far this cycle are headaches on and off as warned from the spinal tap.

However, my hope may be a bit too early as for cycle 1 and 2, it wasn't until day four and five when the jaw pain started with everything else following soon after. I'm really hoping that I don't wake up tomorrow with pain, I want to play in the new fluffy snow, not sit around popping Tylenol. Fingers crossed my body agrees with me!

Pretty berries amongst the white and grey.

Post-Chemo #3

I survived round three of chemotherapy. I must say the last two times seemed easier (although the first time I was hospitalized so I'm not sure it should be used as comparison). I don't know if it was the additional stress of the spinal tap or because I didn't really nap off the Benedryl but I was much more tired by the end of the day than last cycle.

While the regular chemo medications were routine, the spinal tap part of the chemotherapy was quite unpleasant. Turns out that the medical professionals were telling the truth that the freezing was the most painful part of the process, it did not make the entire thing any less anxiety-inducing.

Thankfully it wasn't a very long procedure and happened pretty fast. After the chemo infusions in my PICC line, the doctor showed up to do the procedure. It was one that I had seen many times in in-patients and he's super relaxed about the everything which, I think, made the entire process somewhat easier. It was better than having some new resident.

The process involved sitting on the side of the bed and leaning over a pillow on the table tray. The doctor cleaned off my back with some alcohol, waited for it to dry a bit, and then, without any warning, shoved the freezing needle into my spine. After that I didn't feel much except for pressure every now and then and sharp pain once when the doctor went outside of the freezing area.

Unfortunately, the lack of pain didn't exactly reduce my anxiety. I kept thinking that I should be more calm as it wasn't directly hurting but the thought of needles in my spine while medication was injected and samples were taken was enough to keep my anxiety high. Even though it felt like it took forever, it was only three Adele songs before it was over.

I had to lay down for a half hour before allowed to leave. Apparently, the main side-effect from the spinal tap is killer headaches so it's advised to lay down as much as possible for the following 24-48 hours and drink fluids with caffeine. After the requisite time, I was allowed to go on the provision that I reclined my seat the entire drive home (I did, I didn't want a killer headache). I crashed out almost as soon as we got home but then couldn't sleep due to heart burn. I don't think I ate that much before going to bed so it must've been a chemotherapy or stress reaction.

Yesterday, I woke up with pain in my back and general exhaustion. I spent the day napping off my lack of sleep from the night before, drinking all the fluids, and laying on the couch reading as the doctor ordered. It was a great snow day on my part.

My back is still a bit sore today and while I managed to avoid the headache yesterday, it hit me today on and off (a reminder to drink more coffee). The back pain makes sense as once the freezing wears off, the spot where the needle went into the spine is going to hurt. At least it's not a sharp pain, more of a dull ache that is irritated whenever I do too much like pick something up off the floor.

As long as I wasn't bending over too much, I felt okay enough to get off the couch. So I drug myself outside of the house for a little skate in the morning and snowshoe later in the day. It felt great to be outside after a few days of laying around. I want to do as much as I can before the full side-effects of the cycle hit and I don't feel like leaving the couch. Hopefully I can enjoy the snowy weekend before that happens!

Off we go! My pair are borrowed from the community center and are much too big but still work.

Snowshoe into the sunset!

Chemotherapy cycle #3

I'm off for my third chemo cycle today. Well, chemotherapy is tomorrow, heading to Halifax today at some point. Our car has taken a turn for the worse and is in the garage so now I'm waiting for Amy to chauffeur me around. Hurray for family!

The R-CHOP part of the chemotherapy should all be standard. I get super sleepy and spacey from the Benedryl but other than that, I don't expect any side-effects to hit until the end of the week.

However, the one new thing that they'll be doing tomorrow and for the following 5 sessions is a spinal injection of one of the chemotherapy drugs into my spinal fluid. Last treatment the doctor rambled off all the areas where the lymphoma is located in my body and said that I had three options to prevent it from moving into my spinal fluid.

The first option was to have a different drug concoction infusion between my chemotherapy doses which was ruled out as I crashed so bad after my first dose that she didn't feel my body could handle more meds. The second option was to have this spinal tap for the next 6 treatments. The third option was to wait until my treatments were over and have 6 spinal taps in a two week period immediately afterward. She thought that option two was the best and I really had no real choice but to agree.

Apparently this is a 'common' procedure that they do with a lot of people with lymphoma as a preventative measure. As once the lymphoma gets into the spinal fluid, treatment becomes "very difficult" (quote from the doctor), as though it's been super easy so far. I don't want to see what "very difficult" looks like.

I'm quite nervous as I am about any new medical procedure. Everyone claims that the freezing is the worst part. I've heard that too many times to really believe them but I remain hopeful. I'll let you know if it's true. Maybe they'll inject it while I'm knocked out from the Benedryl so I won't notice it at all.

Look Good Feel Better.

This past week Amy and I went to a cancer workshop called "Look Good Feel Better" run by volunteers at the oncology wing of the Moncton hospital. It's a nationwide program and also had workshops in Truro and Halifax but Moncton was the most convenient for both of us and they let me go even though I have nothing to do with the Moncton hospital.

The mission statement of the workshop is: "We believe that if a woman with cancer can be helped to look good, chances are she’ll feel better, her spirits will be lifted and she’ll be empowered to face her illness with greater confidence. We like to call it a 'makeover for the spirit'." Taken from their website. It's basically about how much better you'll feel about the fact that you have cancer if you throw some makeup on.

As I generally try to avoid anything that swears it will empower me to somehow become a better person, I was quite skeptical about the entire thing but was lured in with the promise of free makeup. Amy signed us up and we thought that Amy was going to get a free makeup kit too but it turns out that they're only for those with cancer which was a bit annoying. Amy was stuck watching me get a little make over and listened to how to take care of her skin while undergoing chemotherapy. I'm sure it was very exciting for her.

That aside, overall, the workshop was better than I had anticipated. There were only three of us with cancer and about ten volunteers which seemed a bit of an overkill. I guess everyone wants to make women with cancer feel better. I thought that two hours was going to drag on but by the time they walked everyone through the makeup kits, we had some tea and cookies, and then talked about wigs for awhile, the time was up.

I did find the make up part of the workshop to be a bit much for me. While, as someone who doesn't usually wear a lot of makeup and doesn't know what to do with it all, it was nice to be walked through what to do with the random creams and powders, I thought it was a bit extreme when one of the volunteers declared that 'the only way to feel good about ones' self is with makeup.' I mean, sure, being made up can help you feel better about your outward appearance but I hope that it's not the only way people feel good about themselves. Even if they don't have cancer.

After the makeup part and the snack break, they brought out a bunch of different wigs for people to try on and talk about wig care. One of the women was only undergoing radiation so didn't have any hairloss, I imagine the wig speil was very boring for her. The other woman and I chatted about what it was like to lose our hair. The other woman seemed much more traumatized about it than I feel. Don't get me wrong, I freaked out when my hair was falling out. But now that it's almost all fallen out, it doesn't bother me. The only bother is that my head sometimes gets cold. I think the different reaction may be because  she had very long hair originally whereas I've had short haircuts so am a bit more use to looking at myself with less hair - clearly having no hair isn't the same but it's not as big of a change. Or maybe I just don't have the energy to freak out over not having hair anymore.


I learned in the workshop that when it comes to buying a wig, I did basically everything wrong. Turns out that they don't recommend you just buy some from etsy. They feel as though going to a professional wig place and having the wigs properly sized is important. The woman running this part was very clear in the importance of a properly sized wig and did not approve of my etsy-buying ways. She was also very against taking a wig to any hairdresser and say that only wig hairdressers can cut wigs. I'm not too sure about this seeing as every hairdresser starts off by practicing on wigs so they should know what they're doing. The other women use to be a hairdresser and had cut her own wig and got a big pointless lecture about how she shouldn't have done that. Maybe she could skip lecturing the woman with cancer about cutting her own wig (which looked fine) next time. 

Even though I learned that I had been destroying my eyelashes with my waterproof mascara, doing everything wrong with my wigs, and not changing my toothbrush often enough, it was nice to simply have a conversation with someone also going through intensive chemotherapy. The Halifax team has me isolated during my treatments there so I haven't been able to chat to anyone. I didn't realize this was something I was missing until after the workshop and I realized how nice it was to simply vent a bit to someone who intimately knew what I meant. 

I have the same thing a bit but to a lesser degree when it comes to CF woes as I have Amy to complain to. I've also met a few people online but as the CF medical professionals strongly recommend that everyone avoid each other like the plague they aren't about to hold a 'Look Good Feel Better' workshop for women with CF. Even though that would probably be an amazing workshop. They could cover how to cover up baggy eyes after coughing all night, how to get pants to fit after weight loss, or the best meal combinations to make with hospital food.

All in all, I'm glad Amy signed me up for the workshop. I learned a few things, met some other women with cancer, and did get a ton of free makeup. I'm now a makeup person, apparently. I'm choosing to ignore the part of the workshop where the companies who donated the sampler makeup want all these women to become hooked on their products as they're considered 'chemotherapy safe' and buy it after the sample runs out. Oh look, my cynical side is showing again.

Wigs!

My wigs have arrived! I ordered two online and then have been given two from friends of family. I love the ones that I paid for which is a huge relief. I was a bit nervous if they would actually look like they did in the pictures. They're less conservative than any I could get at the cancer room in Halifax as well as the ones I got from the friends. Although the ones from friend's are both human hair which looks more natural and can be styled more once I figure out how to do that.

I'm still not sure how much I'll wear them, I don't wear them around the house when just Isaiah and I are home as they tend to get itchy after awhile. I have been wearing one, usually, if I'm going out for any extended period of time. Although I didn't when I went skiing as I figured a toque and helmet was enough on my head while going down the hill. But it is really nice to have options on what hairstyle to have.

Here are the many new hairstyles of me (I apologize for the blurry pictures, my phone camera is on the decline):

The two human hair wigs, more like what my hair looked like before it fell out: 

 The looks from etsy. I love the purple hair. I also love having long hair for the first time in forever.

 The looks that happen most regularly. Headscarves and toques. At least for winter.

Home fun!

Being home is fantastic! I'm feeling excellent and have been busy as a result. Hence the lack of update.

Isaiah and I headed back to the walking track when we got home which felt good. I mean, boring to walk around a track, but it was nice to be walking and working my muscles again. I'm really trying to get my muscle mass back from losing it in the hospital. My appetite is superb which means I should be gaining weight back any time now...hopefully.

I managed to make it back skating on Tuesday for a little bit. I was quite wobbly at the start being back again but made it in and out without any falls. There were more than me and the two regular men at skating which was nice to see. Everyone is starting their New Years Resolutions out strong. Stick with it, everyone!

Today I went skiing for the first time in three years. It was the first day Wentworth's opening day which meant only one run was open. I was a bit concerned that I would get bored with just one run but in the end, I got tired before any boredom could hit. It felt incredible to be skiing again. I got hit with the 'I can't believe I can do this again' feeling during the first run which I wasn't expecting. It's the same feeling I had the first time I went cycling post-transplant and again when I went kayaking and again when I went swimming...and basically any time I've done any new activity without coughing since the transplant.

I guess I thought that this far from the transplant that I would be over the whole 'I can do things now' but apparently it never gets old. I'm not sure how many 'new' activities I have left to return to that I would've loved pre-transplant. I guess there are new winter things but now I've gone skiing and skating that I think those are out of the way. I don't think if I go sliding it will hit me the same way but who knows. I'll let you know if it happens.

Skiing! Isaiah snowshoed up the mountain on the back trails while I used the lift to get up.

Holiday Break: Part 2.

The holiday break continues....

I had been sent home from the hospital despite my fever so we returned at 8am as instructed. The day staff all seemed a bit freaked out at the fact that the night staff had sent me home without drawing blood. In fact, they seemed confused why I was sent home at all. After a lecture from the nurse and the doctor about how I never should have been sent home (as though it was my judgement call), they finally took my blood, called the hematology team in Halifax, and set me up with the right antibiotic.

The hematology team in Halifax decided that I needed to be admitted for the rest of the antibiotics and until my fever dispersed so by noon I was strapped in the back of an ambulance zooming down the highway to the VG. I say zooming...we weren't actually going very fast, it was not an emergency. Also, from the point of view of someone on a stretcher in the back, ambulances are ridiculously uncomfortable. I was pretty tired after being up most of the night so I napped on and off the entire day.

By mid-afternoon, I was admitted back in the VG, on 8B still very tired and slightly nauseated. At least 8B is the nicer of the 'B' wings with bigger rooms and my own fridge. Isaiah drove up later in the day with clothes and food and a birthday cake.

I spent the evening and next day on fluids and IV antibiotics feeling overall okay but still very tired. My fever went away and I was well hydrated. Thankfully, my white cell count increased so they stopped the white cell boosters. After days of pain with no white cell growth, I finally had results. The bone pain continued for one more day before finally leaving me alone.

On the 1st they stopped all treatment and waited to see if my fever would return overnight. Thankfully it did not so I was sent packing with my hospital provided lemon meringue pie.

All in all, a short but frustrating hospital stay. Frustrating more because of the timing rather than the actual stay itself. I knew when I woke up at 3am on my birthday with a fever that I would end up admitted in Halifax. I really really didn't want that to happen. I had friends visiting and I'm tired of my health problems ruining every plan I make.

The upside to the hospital stay was that a ton of people came to visit me so I ended up seeing way more friends than I would have had I been hanging out in Springhill as planned. Most of them brought delicious food with them as well which was also fantastic. Thank you everyone, you really are the best.

I'm now comfortably home and feeling pretty good. I made it to the walking track the past two days and my appetite has fully returned. VON nursing is coming twice a week to take blood and do PICC dressing care which is fantastic because it means no poking for me as they can take it from my line. The only downside is that it takes them much longer than at the blood clinic as they have to fill out a mountain of paperwork and label everything by hand. I just sip my tea while they spend 20 minutes writing all my information on every vial of blood.

I guess since my energy is back, it's time to take down the Christmas tree. Tree pick up isn't until next week but the tree itself is very very dead so perhaps it should go outside before it becomes even more of a fire hazard.

Goodbye beautiful tree.

Holiday Break: Part 1.

[I'm breaking this into two parts because as much as I was hoping for a relaxing/boring break between the last post and now, unfortunately it didn't quite turn out that way]
 
Happy 2016!!!!!

I hope everyone had a relaxing and joyous holiday with friends and/or family and indulged in delicious food.

I had my second round of chemotherapy on the 22nd. It was fairly uneventful just as I had hoped. Simply a very long day in a very little room. I saw the doctor, reviewed all my medication and the entire chemotherapy process, was given some Benedryl before the first infusion, had a nap during the first infusion, listened to some podcasts during the subsequent three. Isaiah picked up medication I was missing and then we returned home.

We went to NB on the 23rd and spend the following days with both mine and Isaiah's family. We had a wonderful time with everyone. Seeing as last year I was in the step-down unit where they wanted to remove my trach but I had a panic attack which resulted in an Ativan induced Christmas-afternoon nap, being home and cooking some Thai food this year was amazing. It was very relaxing to just be home participating in our ridiculous Christmas traditions.

Leftovers from our pineapple rice. Yum!

We drove back to Springhill on the 28th, between the the snow storms as I had the VON nurse arriving on the 29th for blood work and to change my PICC dressing site.

We managed to relax at home for an entire day when at 3 am on the 30th, my 29th birthday, I woke up with a high temperature. Actually, I woke up from joint pain - I started the white blood cell boosters on the 25th and started having bone pain soon afterward. I took a pain killer and realized that I was also quite warm so with much regret, took my temperature. The thermometer showed that I had a fever but I didn't want to believe it as I knew that would mean having to leave the warm bed and would ruin my birthday plans with my friends so I took it another 10 times over the following 30 minutes just to be sure. I stayed in denial until my rational side kicked in and told myself to get out of bed and go to the hospital.

[When I was discharged from the hospital mid-Dec, I was given the 'cancer yellow card' that explains what to do when my temperature reaches over 38.3oC (go to emerg ASAP). The card also explains to the health professionals in the emergency department that the person holding the card has had chemotherapy and that they need blood work drawn as well as an antibiotic ASAP.  In busy emergency departments it would jump me ahead of most people.]

We (Isaiah) cleaned off the car and we ventured onto the snow packed roads. Thankfully we live just down the hill from the Springhill hospital as the roads at 4am were terrifying. When we got there and buzzed our way in (and by the look of it, woke up the nurse), I showed the nurse the yellow card, told her my white count was very low, and asked for the appropriate antibiotics. Unfortunately, the Springhill department only has a physician on call from 8pm-8am and when the nurse checked my temperature, it was slightly less than 38 degrees. The physician decided that since the blood lab was closed and nothing could be tested, it would be best if I went home and returned at 8am. In the meantime, if I got worse, I was to drive to the Amherst hospital to get everything done there.

To be continued...