Day 25 of 2017

Up super early today and lots happened so exhausted and brain dead. Hope I can do this post justice.

So yesterday I just wanted to be able to close my eyes and not open them again until this roller coaster ride was done. Well today I would like to just blow this friggin roller coaster into tiny pieces. We had a 9 am appointment with the surgeon this morning. He told us that there is concern that it is tumor recurrence, yet my wife’s NO office told us yesterday that the tumor board said it was from the radiation. He said that he needs to do the surgery as soon as possible because size is an issue. If it gets too big he would not be able to do the laser surgery. He went through all the risks, some of which my wife is at higher risk for. Told us how this surgery would wipe the slate clean and set the clock back 6 to 8 months. He explained that there is no cure of course, and all they can do is kick the can forward. He went out and called the NO to see about the temador cycle she just started yesterday and came back and said that was ok. So it was all agreed upon that she would get the surgery. Awesome news right, till they came back in and explained that Medicare does not cover this. That we would have to come up with $9000 before the surgery. Might as well have been 9 million dollars for two people on disability. I didn’t care and told them to go ahead and we would come up with it somehow. There was no way I was not going to get my wife this surgery. I won’t go into details but she is going to have the surgery.

So now we are at home waiting on phone calls. Her NO calls me directly to discuss moving forward with the surgery. She is hard to understand in person and even harder to understand on the phone. The jest of it is that she wants to talk with us before the surgery about which trial my wife will enter after the surgery. I guess going into a trial after the surgery is all part of it. She mentioned one type of drug and immunotherapy. Both are administered by IV so that presents its own problems with my wife since she hates IVs to the point of getting very upset. I am leary about the immunotherapy because of how sensitive my wife is and the problems she already has had. But that is a bridge to cross when we see her NO. So the next call comes from the surgeon’s office. She is scheduled for an MRI on Tues Jan 31st, it is a special one that will map her speech (one of the higher then normal risks for her) and her preop screening (we will get there for the screening at 3 pm and the MRI is at 8 pm). Once the surgeon reads the MRI he will schedule the surgery. The surgery should be done by Feb 20th. They want to wait for her to do some healing after her chemo cycle ends this Saturday. So I am happy to hear that everything is moving forward quickly in my opinion. However, my wife does not think this is quick enough and is upset about it (thank you dex and keppra). She is scared that the tumor will grow too big before they can operate. I tell her that when he looks at the MRI he will know how much time he has. Now lets add to this mix that Sunday will be her last dose of steroids. She needs to be off them before the surgery because having been on them since July last year makes her prone to longer healing time. So she has swelling going on and they are taking her off steroids over 6 days. I am hoping like crazy nothing goes wrong with this.

So today emotions have been all over the place. I have been dealing with doc appt, looking for ways to finance this, phone calls, her best friend who is the queen of denial right now, telling the kids, and last but not least an emotional wife who at first thought the surgery would never happen then was upset because it isn’t happening fast enough for her (and that is ok Babe, you have every right to feel like this).

And that folks is why I want to blow the friggin roller coaster into tiny pieces.

Thank you for taking this walk with me.

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