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Jay L
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It has been 40 days since my last post. It feels like much more and much less time has passed than that, but life is significantly different now, and regardless of the time, I am so grateful for the changes. Day +128. I just barely finished all my scans and blood tests and biopsies for what is called "the 100 day workup" where we finally sit down and figure out whether all this was worth it or not. For the past 4-5 weeks we have not had a single hospital visit that has not turned into a full day spent getting tests ran or having infusions done, you name it. The shortest amount of time we have spent at a clinic visit was probably 5 hours. My red blood cells are destroying themselves for reasons the doctors are not sure of yet. My platelets and white blood counts keep dropping. My blood pressure is through the roof. Needless to say, when I walked into the consultation room for my 100 day sit down today, I was not expecting good news.

Despite my rather dismal hospital experiences, life has been improving in so many ways. Our trailer finally sold. We moved to a new home that allows me to live without climbing stairs. I go for walks now outside and the sun on my skin is one of the most amazing sensations I have ever felt after so many weeks spent trapped in an apartment by cold, concrete stairs. Our new home is beautiful and more than I ever imagined. What's more, it was meant to be rented to someone else, but when our situation was explained, the other renter let us have it instead and postponed moving in. To top everything off, we found out that the bus from Rorie's school stops almost right next to our house. She has been asking and asking to ride the bus, so she rides home now and I get to walk out and pick her up! I finally get to participate in part of her school life, and it has freed Colten up to spend more time in school and get his shadowing hours completed for graduate school. Oh, and we completed and turned in his application for graduate school with literally about two minutes to spare. I don't think I have ever felt such stress in my life, but we made it!

My mobility is slowly but surely returning, and while it feels like a roller coaster of good days and bad days, I am so grateful for the good days. Mornings are the hardest, when I have to convince myself to move. It is always a painful battle, but the thud of Rorie's feet running for breakfast and the gentle caress of Colten's hand across mine in morning greeting always pulls me out of bed. My doctor told me never to give in to my body's natural desire not to move from the steroids, or I wouldn't be able to anymore. I took that to heart.

I can complete simple household chores again. I am not terrified to be left alone. I can get myself out of the car, dress myself, go to bed on my own; such small things that are so life changing. I have so, so far to go. I still cannot get out of "low" chairs or climb stairs, my hands still can't do much more than you could achieve with clubs and somewhat opposable thumbs, I can't walk long distances, or even walk well without my walker assisting me, running seems like a figment of my imagination--but I get to have small victories every day. Sometimes, I feel frustrated that such insignificant accomplishments, such as bending over to pick something off the floor without falling over, or typing a blog with my fingers in the appropriate places on the keyboard because my hands are finally getting strong enough, or getting out of a higher chair on my own in the hospital, are things that make me feel so incredibly proud. How pathetic is it that climbing up on to a curb with a walker makes my heart beat with joy? Well, it's not pathetic. A few weeks ago I could literally barely move, and now I can climb up onto a curb. Yes it is a small step, literally and figuratively, but it is a step. And I will continue to revel in what seem to be small victories, because they will eventually win the war that leads me back to myself.

Along with my mobility, my love of living has returned. The doctors started me on antidepressants at my own request. I have never believed in them and still worry about the process of weaning off of them, but this "situational depression" (the medical term) was having its way with me and I needed help. My dosage is very small and I am not sure how much of my returning happiness should be attributed to my amazing family and overall change in situation, but I'll take it. Even on bad days when it still feels like my body barely wants to breathe and definitely does not want to move, I am happy to breathe.

We have had SO much family come to help us. Colten's family and my friends have come to sit with me and bring dinner on nights that Colten has late classes, tons of family came to help us move (and it took forever, they were amazing!), and then my best friend and her family were able to come stay with us for a week and start getting the house settled. They made dinner every night and kept me company all day. Honestly, it meant more than anything just to have constant companionship for awhile. Soon after that visit, my mom-in-law came for a few days, and she put almost the entire rest of the house in order (yes, she is extraordinary, and also made us delicious dinners--incidentally, I have decided that making dinner/bringing dinner for someone may be one of the nicest and most meaningful things you can do). Rora is thriving in school, and while life is still not great for her, I am amazed every day at her tenacity and giving spirit.

All-in-all, life is far from perfect. I am nowhere near who or what I want to be. But it is getting better every day, and it will continue to do so as long as I am willing to get up and work for it. In the midst of my own trials, my dad is facing far worse. He was basically given months to live, but a doctor's words regarding lifespans mean little to me. They were never right in my case. Regardless, we don't have the funds and I don't have the physical capacity to be with my dad as much as I would like to, so I don't have much to resort to but prayer and hope that he improves. I don't understand why all of this is happening at once, or happening at all, but I try and trust each day that God's plan is better than my own. I know my mom is near her wit's end, and who could blame her watching both her husband and her daughter essentially become invalids?

So there I was. Contemplating all these things and anticipating bad news as I waited for the doctor to walk into the consultation room today. But guess what? My cancer is gone. GONE. All the cancer in my stomach has vanished without a trace. There is a little pinprick of light showing up near my left shoulder that may still be a tiny bit of active cancer, but with the amount of steroids and immune suppressants running through my system, it's a miracle so much cancer was killed, and if it is active cancer it is going to get a kick in the pants when my mom's immune system is finally let lose to really attack the bad stuff in my body. Furthermore, the doctors are considering one last round of targeted irradiation just to send that crap merrily on its way to oblivion. Good news. Who would have thought? My life may not be going the way I planned it, but it is going exactly the way God planned it.

To top everything off, my hubby bought me tickets back on my birthday to see one of my favorite Christian bands--Third Day--live in concert tomorrow night, and we get to meet them! I still look like a freak of nature with my swollen face and and stomach and little knobby arms and legs, and I won't be able to stand up straight or walk confidently up to say hello, but I am excited to meet them nonetheless! Here's to tomorrow.
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