Exactly a week from today, I will be finished with the radiation and 42 day chemo treatments!! I'm so excited. I'm also a little nervous. The doctor said I could have a honeymoon of feeling better and then a crash. Total "recovery" from treatment (WHY?!) could be 4-6 weeks. And then on top of that, I only have 4 weeks break anyway before starting the next round of oral chemo, which I don't know how I'll react to either. I think with my age and good health before all this, I may be able to recover pretty quickly though. It will help if I can get off the steroid all together so I can sleep.
I take the last chemo pill and have the last radiation treatment on Monday the 30th. Then I have about a month off. We'll decide at my appointment on the 3rd what day to actually start and when to schedule my "new baseline" MRI. The next phase is 5 days of high dose oral chemo and 23 days off of it. This repeats 6 times. I should be starting the first round probably the week of my birthday and Halloween. I may try to fudge it either direction depending on how it will line up with holidays. I don't know what my physical reactions to the higher dose will be or when they'll happen (during those 5 days or after?) and I don't want to be at my low point in the cycle during Thanksgiving and Christmas.
I'm counting my blessings though all this shit though. I have an amazing job to return to. While we do have high medical bills, we are able to space out the payments to make it more manageable and our portion is literally hundreds of thousands of dollars less than if we were without medical insurance (so far racked up $140k in costs). While I'm unsure of the long term disability insurance being approved for the next few weeks and covering the other hours of the weeks that I might not be able to do full time, we've had good short term payments for the last 12 weeks and were able to retain our fabulous nanny. I haven't had any seizures so I still have my independence with driving and especially going to/from work. Friends, family, and coworkers (and in some case, strangers) have been so generous to us that we're covered for food for our family through October still! And the biggest benefit of my C card so far has been using it to negotiate a lower rent increase for our 16 months renewal.
The kids are all doing well. Charles and I both have a shorter fuse than normal (worse on less sleep) but we're both consciously making an effort to try to reign it in. We have 5 year olds who are testing every boundary, and a 2 year old that is determined (her biggest personality trait!) and she's.... well.... two. Grace wants to know that we mean what we say so when we threaten something, we HAVE to follow through. They're inquisitive, which is great, but takes more patience on our part to appropriately explain why we're asking them to do or not do something so they know there's an actual reason and we're not being bossy. Then we wait. and wait. and wait. for her to take her dear sweet time doing anything and EVERYTHING. It can be SO frustrating sometimes.
We are holding off on potty training Ellie since she refuses to even try when we ask even when she's got a dry diaper. We're also holding off on turning her crib into a toddler bed. The mattress is on the floor inside the crib (crib bottom is low to the ground) so she isn't climbing out yet. But she also gets up at 5:30 some days. We're not in a rush to allow her freedom that early in the morning or the option to skip nap more easily than she already does. We got her a "night owl" that turns green at 7am to let her know it's okay to sing and wake up the whole house, but it glows pink all night and instead of having a "green means go" attitude to the green light change, she just gets pissed that it isn't pink anymore! She's such a pip.
As far as how they're relating to my disease, they seem to be doing fine with it. They will ask questions occasionally or we'll tell them they can ask us anything about it. They still understand there was a "boo boo" in my head that the doctor took out. I go to the doctor every day to make sure it stays away. I take medicine that makes my hair fall out and makes me tired sometimes. Most people we know already know that I'm sick so we don't have to tell them and they won't make fun of me for not having hair. Liam is very worried about "people will laugh at you" if I go outside without my head covered. That's all they need to know and it's enough for them. I think we'll wait until they're old enough to understand, without fear, what the medical terms mean. I don't know when that will be, but definitely not for another couple years.
We still try not to talk about it in front of them, but then there's people like the woman in the waiting room at their well visit pediatrician appointment this afternoon, who took it on herself to ask if I was going through cancer treatments while Grace was standing right there and say her mom is going through breast cancer treatments. Really? I mean it's obvious since I'm wearing a new "I have cancer" head covering, but is there no privacy to strangers? How do I respond to that? I'm not going to give my life story to a stranger in front of my kids or even by email, or in the mood to accept unsolicited advice. I need some zingers to put people off. I'm not usually someone to purposely make someone have a WTF reaction, but I do really need something to make people back the F up. It's like when stranger touch a baby or a pregnant woman's stomach unsolicited. What about cancer makes people think they can pry into a stranger's life?
Anyway, done with that rant... for now. Charles and I had a lovely day today. He decided to take the whole day off, which was really really nice. Despite having a medium-low night sleep (for both of us, even in different rooms), we were able to go get a starbucks coffee, go to the appointment together, have a nice lunch out, and then a half hour walk in the lovely weather before the nanny had to leave. Then we hung out alone together while Ellie napped before we took the kids to their well visit in the afternoon. Cousin Luke came to play with Ellie which was great too cause then we didn't have to take her with us to the appointment. Man, the one on one parenting of that appointment brought it into clear focus just how much easier it is with 2 kids!! Not that I don't enjoy having 3, just an observation!
Long update. Thanks for hanging in there with me.
Necessity is the mother of invention right? Remember that (trivial) complaint about my ear hurting when I lay on my side? I made this soft, little ear wrap to deal with it. And it actually worked! The fat part rests behind my ear like a hearing aid. I need to make a second so I don't have to switch it when I turn over. I'm probably a little over proud of myself for this, haha. I just thought it was neat that I was able to craft my way out of an issue instead of throwing medicine at it.
So over the last few days, I've lost about 1/3rd of my hair. It was very very noticeable. Over the course of this whole disease, I've only cried a handful of times; when I first found out, a few times during post-surgical pain, this week when I couldn't eat or drink for 24 hours, and then yesterday when I actually started to feel sorry for myself.
I had two very large gaps on either side of my head. I'm reluctantly going to post the before picture just to illustrate the severity of the loss. I decided to go "punk" for now as a big F U to brain cancer. I shaved the majority of my head and left a strip down the top for a mohawk. Then I did what I've always wanted to do, but was either too afraid to or was trying to stay professional; dyed it blue! So here's the pictures of before and after. Charles is amazing cause he did all this with me to show support!
