Yesterday, the trip to my hematologist went well and he thought my bones were in "not bad" shape. He agreed there was improvement and said my bones right now are in the best shape they will be in, unless I were to undergo a very long course of additional treatment.
In my gut, I feel like my bones are strong. I couldn't wait to get home and write Dr. B, my neurosurgeon in NY, to tell him the good news and to get the go-ahead on scheduling the fusion surgery. Which is what I did.
Had a great night's sleep, waking up at a normal time in the morning with no pain and in my same bed. Then, all day, I just felt great, and when our son called to visit and we heard how happy he is, that was the proverbial icing on the cake.
Then, I checked my emails and there was one from Dr. B. He said that I will need to take 12-18 more months of bone enhancement therapy before another discussion about the fusion. I was shocked. And am still crushed.
I don't understand why I was allowed to go down this road of sure hope only to find it dashed. I wouldn't want a failed fusion, that's for sure...but I just felt so strongly that I would be okay, and that my neurosurgeon was on board with me having surgery if improvement was found in the bone scan.
This affects just about everything for me. I am grieving hard for the death of a vision of wellness. I feel hope is gone. Things are getting worse and worse for me and now I have to endure this for another year or year and a half? I can't drive at all, haven't in a year. I suffer each time we drive 35 miles from the house and spend the rest of the day in pain and deep suffering. I can't go to visit my mother in NH now, who is 83. I will have to cancel doing the gig down in CA in December. I can't go down there and meet my son's new girlfriend. I guess I can just stay home and take pictures of rooms.
I'm so dismayed, broken hearted, discouraged, disheartened. I feel beat down again and again. I do everything I'm required to do, I jump through all of the hoops and then I get stepped on like this.
I do appreciate my doctor being careful and conservative. And in the long run, I'll settle back into life such as it is. Unable to think without pain, pain with talking on the phone to family and friends,
up most nights with pain
unable to exercise and get fit again. I hate my body, the rolls of fat, but before now, I could look at it all and tell myself, soon, very soon, I'll get to hike again and I can work this off. Now, it sickens me to look in the mirror and what I see represents who I am now, and I just wanted so dang much to be myself again.
It's a dark day for me. Crying has created a lot of pain and the tears continue to flow. My hope feels so dashed. Now, I know better. If I go jumping through the hoops again, I am now jaded. I am not expecting that Dr. B will allow me the surgery even then, 18 months out in the future.
I just so wanted this weight of my skull, which is incredible, off of my nerves and all the things that cause me problems and pain with thinking...
I'm sorry...this is very, very rough on me.