Bone pain = a thick deep radiating pain. For me, it is worse after some sort of impact: sitting/standing, walking, etc.
Nerve pain = a hot, sharper pain. It's bad. All of the time. Bad.
I hate them both equally. Nothing helps to ease the pain of either. Each makes me want to die it hurts so badly. And then it will go away.
Tomorrow is my last (15 min) chemo of this protocol. My CT is this Thursday (the 27th) and I hear the results/what next on the 3rd.
Molly, my ADORABLE niece turns ONE on Wednesday I cannot believe it. Time flies. I was told last June I would have "about a year", I say how about another.
The past 3 weeks have been crazy with going to Toronto for a quick trip, only to come home to have to start chemo right away (for a week). Needless to say, I was exhausted and run down and how did I know that for certain? My body produced 7-8 big, nasty cold sores on my lip and inside my cheek. I was a hot mess. Literally.
I have barely walked my dog in 3 weeks (other people have been doing it for me). I am in this blah cave where I sleep in LATE (between 10-12) some days and then the day is gone and I am in bed by 9:30-10 reading again. It seems like I don't have time to do anything because I am too busy sleeping and doing nothing.
How is it fair that I get sick and now I lose (temporarily) my job, maintaining relationships with my colleagues and friends. I do nothing. I have nothing to talk about. It is hard to feel like an outsider from your own life really. All of my dreams have been stolen from me. You think you know what your path in life is, or you know what you want to do as a career and then CANCER!!!!!!!****!*!!*!*!*!*!*!!!!!*!*!* And everything you have worked for up until that second is essentially thrown into a garbage can.
How do you try to find a new purpose? How do you try to define who you are when you don't know who you are anymore. I can't speed skate, play soccer, work, enjoy a cold beer, go to the gym (because of pain), I can't skydive, bungee jump, I can't travel, I can't sit in the sun too long, I can't get my hair done. I don't date, I don't care about A LOT of the things I used to.
Lately, having read Proof of Heaven, Heaven is For Real, and The Angel Effect, and having been going to church frequently, I have spent a lot of my time wondering about life, and what comes after. I have a different perspective on "things" now. No one in heaven cares what car you drove, or if you were 5 lbs overweight. I start to say and think 'who cares'. Because, honestly, who cares?
In my dream world there wouldn't be money or anything that represented it. Everyone would do whatever they wanted to. You would have to work, of course, but it would be a job in which you were passionate about. If you did you part, you could enjoy whatever you wanted. Basically, everything is the same price; free.
I feel that people are way too stressed out about MONEY. I say- WHO CARES?! That is not what life should be about. It should be about eating good food, traveling to learn more than is ever taught in a classroom, laughing until you cry and reading good books.
Have you really sat down and had a good, hard think about LIFE and what truly matters to you in your life.
Don't say you will do it tomorrow, or next spring, or when you retire. What if you died tonight in your sleep. WHAT are you waiting for? If you wait, it will be stolen from you. That is a guarantee.
That is exactly why I came back to the Maritimes from Vancouver. The big high paying job did not matter and the fancy apartment did not matter when I was told you have Lung Cancer. After I had a chance to digest the diagnosis, I immediately went to my computer and looked at the videos that I took of my best friend of 25 years and I in Newfoundland and I wondered if I would ever see her again...that special bond that we share is why I am home now so that I can have more of those joyful simplicities for which money has no answer. We all come with an expiry date and since none of us know when that may be- like Laura has said before- hug those that you love and take off your watches and lose track of time only love is the answer
ReplyDeleteHugs and Love xoxo, Family is always the most important thing in life.
ReplyDeleteIt is good to hear from you. You are right it isn't fair you have this vicious cancer. Or that you are fighting as hard as you can. We need people to see the devastation Ewing's Sarcoma brings to our precious children, teens and young adults. You are our future and you deserve that. Mathew is not done his treatment yet; the protocol is so hard on his body that the last round took 4 weeks to recover from. I go back to work next week and my husband will be taking over caring for Mathew for a few months. I will definitely not be sweating the small stuff and my priorities are very different. Life is so fragile and you guys have to fight so hard... it truly isn't fair and it stinks.
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ReplyDeleteWhat do I say to someone going through everything you have been through and still fighting? I could rage and scream, and say it`s not fair, and use words that would probably get your blog flagged up as highly unsuitable for children. But there is nothing I can say that is going to help in any way or make any of this any better for you.
ReplyDeleteI don`t remember how I came across your blog. I think a friend may have mentioned it to me. I checked in about 5 months ago and something just drew me back to it today. I was wondering how you are doing. Pleased to see the answer to that is still fighting.
I`m sure it won`t offer much comfort to you to know that there is this perfectly healthy (as far as I am aware!) woman down in California, checking in on your progress. I`m stressing about tax season at the moment. You have pulled me up short on that. I want to turn around, grab myself by the neck and give myself a good slap. I`m not going to bang on about what an inspiration you are, how strong you are, yada yada yada. I`m sure you already know that anyway. And I`m sure the only thing you want to hear is "You`re cured". Wish I could say that.
But - it ain`t over till it`s over, kiddo. Keep going. Don`t know if you`ve read it yet, but Anita Moorjani`s book Dying to Be Me is a good one. Good luck :)