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.

Sisters.

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.

Haircut

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.

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.