Happy Holidays!

Happy Winter Solstice! I know technically it's tomorrow so I guess, Happy Last Day of Fall!

I've actually had a relaxing few days at home, I feel much more settled, less panicked over something going wrong at any moment, and a bit more caught up on sleep.

We're back to Halifax tonight as my second round of chemo treatment starts at 9am tomorrow. I should be able to get in, get the medication, and get out in a fairly reasonable time. As I had no reaction to the last treatment, they'll be able to pump the medication into my body a bit faster than the first time.

We're also hoping to check out the Sunshine room, I'll be allowed in now as an outpatient so maybe I can get a few headscarves or ties that don't scream too much 'cancer patient.' I have a lot of toques here at home which is great but they're mostly wool which I think is going to become itchy once I loose the tiny amount of hair I have left. I was also told that the chemo meds make the head super sensitive so wool hats may not be the way to go.

After tomorrow, if all goes well, we're planning on heading to NB for the Christmas holiday to relax with family and have other people feed us for awhile.

So after today I'll be on Christmas break from the blog, probably until the new year or unless something super exciting happens.

I hope everyone has a wonderful, relaxing rest of 2015 and fantastic start to 2016!

Happy Holidays from mouse ornament!

Goodbye Hair!

I've officially lost all my hair. Well, I got it shaved off so there is still some hair but it was coming out in such large chunks that I needed it gone psychologically. There is something really bothersome about losing it in pieces that I needed the control back and to not have so much hair all over my pillow. It's still hard to believe how fast this has all happened.

I did have a bit of fun with it before today thanks to my amazing friends even though it all happened so quickly.

On Monday, we dyed it purple which was an adventure as the hospital doesn't exactly have the right equipment for dyeing hair. It was a lot of fun until I brushed it out afterward and it came falling out. 

My regular greasy hospital hair.

How we dye hair in the hospital.

Purple streaks!

Tuesday, I realized how much was actually falling out so my friend shaved part of it off and I had the half-shaved purple punk look for several days. She had quite the task using the dull hospital razor but managed to do a better job than I would've.

Boo.

Punk rocker look.

Today, after washing what hair I had left and having so much fall out that I freaked out, I went to the Springhill barber and he buzzed off the rest of it. He was very nice about it, I think he felt bad as I tried not to cry, and wouldn't take my money afterward. Yay for free sympathy haircuts. I thought I was emotionally steeled to have it done but it's still a shock. Plus my head is now cold all the time. I understand now why Isaiah wears toques everywhere.

A tired blurry me. It's been an emotional few days

Enjoying home.

The last few days have been a bit of a whirlwind. It was nice to be able to relax a bit today although I did spend a lot of time unpacking all of the assorted hospital bags of random stuff we have accumulated over the past month.

The actual discharge process from the hospital seemed endless. Wednesday's resident thought he could discharge me that day but he didn't realize how much consulting with other teams he would have to do and by the end of the day, he called it quits. I also needed a PICC line before he would let me go which I really resisted as the last two have been pulled so quickly after insertion after they thought it was the source of my infections. But as I need a daily IV antibiotic, I was told it was either the PICC line with homecare or stay in the hospital until next Tuesday, I relented and they put it in.

I wasn't officially discharged on Wed night but I was able to go on an overnight pass to a friend's house. It was fantastic. I had a bath, slept in a real bed, wasn't woken up at 4am by someone taking my blood work. I really didn't want to return on Thursday but figured I should. I sat around for them to figure out the paperwork, then I had to pick up the IV medication and zoom home for my 4pm VON appointment (who didn't end up showing up until 8pm).

My daily IV antibiotic will be until Monday and then return for my second chemo session on Tuesday as an outpatient. If all goes well, I'll just go up, get the medication, and return home. I don't have very long for homecare which is nice but I must say, two days of VON care and they are way easier to work with than St. Elizabeth in Toronto. They actually provide supplies! It's so convenient.

Now that I'm actually home, I realize how physically weak I've become. This was discovered when I was walking up the stairs last night and my legs wanted to give out. Apparently not doing stairs for 6 weeks means your muscles atrophy. I had been doing okay moving around my room a lot and using the leg bike but the few days I spent in the IMCU ruined everything. It's hard to keep your muscles strong when you get lightheaded whenever standing up due to low blood pressure. It's amazing how fast you lose muscle with three days in bed. I'm obviously not as bad as after the transplant but the amount of work I'm going to have to do to get my strength back feels comparable. Except I guess this time I know more what to expect.

Being home has also hit me hard emotionally. I think I had been so focused on getting home that once I got home yesterday, the reality of what I'm going through/have gone through hit me. I guess I had been suppressing a lot of the emotional overload of 'holy shit, I have cancer' and it's coming bubbling out. I guess I had to deal with it sometime.

The other part is that I've been so closely monitored over the past 6 weeks that being on my own is a bit scary. I'm nervous every time I use the bathroom that I'll have another GI bleed or every time I have a slight ache in my chest that something is wrong and we'll have to rush back to the hospital. I'm not sure when the constant paranoia is going to end but I would like it to be over sometime soon. Although I'm not positive it'll ever go away. A bit of paranoid is probably healthy in my situation.

Despite all the emotional stuff, it's amazing to be home. Isaiah surprised me by having a tree already in the house (he got it on Monday when he was home for the weekend) which we decorated last night so I'm feeling a bit more Christmas-y. I'm also enjoying all the small luxuries of being able to drink the tap water, use fluffy towels, have a bath, cook my own food, sit quietly on the couch, reliable Internet, napping without interruption...the list could go on and on.

Thanks to everyone for all your visits, support, and messages while I was in the hospital. We really appreciate all of it.

Our tree! Pre-decorations.

Homeeeeee!

I'm home! Yay!!! After 49 days, they let me go!

I'm pretty exhausted and emotional so I'm going to wait until tomorrow to write more but I'm home and can sleep in my own bed!

Light at the End of the Tunnel

Everything has remained stable. Yay! My blood work is looking good, all my blood counts are trending upwards which is most excellent seeing as today is day 14 of the chemo cycle (aka, the day where I'm most vulnerable for infection).

Since everything is stable, I'm waiting on the plan to see what the doctors want to do with the antibiotics; if they can switch me to an oral medication; if VON will visit the hospital; if VON will work with my central line or if I'll need a PICC line put back in. No one really knows.

And then they have to decide what to do with my next round of chemo which is scheduled on the 23^rd. As I'm just now getting stable, they may decide to hold off a few days to let my body rest or they may want to do the chemo but keep me in Halifax afterward. It's all very up in the air.

So basically, I'm waiting for them to come up with a plan. There is a new resident on today who seems determined to get me home today or tomorrow but I remain ever cautiously optimistic.