Bad news and waiting for answers

Hello. I am a week out from my next appointment and I had one the day after I got back to town from Vegas. Vegas was great. I was able to forget about everything going on and I had a nice break from life.  It was fun, relaxing, warm and we had lots of laughs. I wish I was there longer!

I got to Milwaukee the day before my scans started. We had flown out of Appleton so it made no sense for me to head home when Milwaukee was even closer. The scan on Monday was a PET.  I got to sleep and relax Sunday when I got to my Mom's friend's house and after 5 that day I was on a special diet. Nothing with sugar, that includes carbs and no caffeine. They had a list of foods that I am allowed to eat. The morning of the scan I could only sip a little bit of water. I slept as late as possible because my appt wasn't until 1. Then we got ready and headed to the hospital. The scan itself isn't bad.It takes time, but a lot of the time is in the prep.  I first had my blood sugar tested and if it was under 200 then I could get the test. I passed. After that they injected the radioactive glucose that is in a metal jar through an IV. I sat for an hour while that flowed through my body. Cancer is attracted to glucose so the solution would make its way to any cancer in my body and it would then light up during the scan.  I am in a comfy recliner chair and I have a warm blanket on. After the hour, I can start drinking water and then I go into the scan. I have to lay still and the first part of my body scanned is from my chest down. I have to have my arms up over my head. This lasted about a half hour. Next is my head and neck, my head is in a little holder. This one is more comfortable because my body can be in any position, I just need to stay still. Once that was done I was free to go.

My Mom and I went out to eat with my two Aunts at a delicious restaurant that night, then stayed at my Aunt Liza's condo. The next morning we had to be out of the house at 5:50 so it was an early night to sleep!

That next morning I went back to the hospital for my MRI. I was in there for an hour this time so it wasn't too bad. Lately these MRI's have been 2 hours and that is getting too long!  Once that was done we walked across the street for some breakfast.  Then we went to Dr. Kassam's office and eventually got seen by him. When we saw him and his team, there were about 6 of them who came in. Dr Kassam told us that there is a tumor there, and looking at it on the scan, I thought it isn't small. He said it has not grown in the last 5 weeks since my prior scan.  He looked sad though, and told me that it is now in a very complicated place to operate. It is right on my facial nerve. So for now, there is no surgery happening. He said we will be doing chemo and radiation. This radiation would be cyber knife radiation. I had that one 3 years ago and I had no problems with it besides a headache the night I had it. He also said there are clinical trials and radiation beads that we can look into.

The white spot in the middle
is the tumor.

This appointment was two days before Thanksgiving and Dr Kassam kept grabbing my hand, he would tell everyone that I am very special to him. He said to have a good Thanksgiving and that he wants to see me in 3 weeks for another MRI. We will see if the tumor has grown at all.

Valerie, (the cancer doctor's nurse) was in on the appointment and she is going to make sure that I see Dr Taylor when I come down. He did want to see me sooner then that, but we still don't have the results from foundation one testing and I didn't want to go back down again in these 3 weeks that I am home. She did say that we are doing a chemo, but we just don't know what kind yet.

After that appointment I saw an ENT there. He was nice, but it isn't the same with Dr Corsten not being there. Then we went back to a room and Dr Kassam came back in to discuss the PET. He said that there is a spot on my lung, it could be a cyst though and we aren't going to biopsy it or do anything about that right now. He said besides the obvious brain tumor, he didn't see anything else. But now, any time I run out of breath, the spot on my lung pops into my mind.

I am struggling with the tumor news. I have always had the faith in Dr Kassam, every tumor so far, he has been able to remove. To hear him say that he might not be able to this time, is scary. I guess it comes down to hoping that chemo and radiation can do the job or shrink the tumor enough so that Dr Kassam can do something about it. But last time, chemo did nothing. I know that we are testing it this time, so the chances of chemo doing something will be better. And last time, the cyber knife radiation did do its job also. Fingers crossed.  I know a lot of people end up visiting a Texas hospital when they feel like they have run out of options. So of course I will be keeping that in mind too.

I constantly think about my kids. Chances are more real to me, that they might grow up without their mom. My kids have just been with their Dad for 5 nights. First, I thought this is too long. They need to be with me more because I might not be here one day. Then I think, maybe they should be spending more time with their dad because then when the day comes that I am not here, it won't be so hard for them to live with their dad.
Or my friends and I will talk about guys and dating, but in the back of my head, I think, I will probably never get married again or have more babies. I won't be on this earth long enough for that. And if I am, cancer will probably always be there and will I really find someone to marry me? Knowing cancer is there. Yes, I know, those people are out there. But-think about it-would you get into a relationship with someone who has cancer? The possibility of it ending short and in grief, is much higher then it is with a healthy person.
I think about my poor parents, and what it must be like for them. I couldn't imagine what it would be like to go through something like this with Shaya.
I think about how I need to clean out these rooms full of storage in my house so that one day, someone else doesn't need to clean up my mess after I am gone.

 I have always been super positive about all this, you guys know that. And I like to think that I still am, but these thoughts, pop into my head a lot more now then they ever have.

On the bright side of all this, my mouth is doing so much better. I am off of my painkillers, and I rarely use my numbing mouth wash. I have been able to eat a lot more food and each day is much more enjoyable now that my mouth isn't killing at all times. There is still a bit of healing to go, but it is now tolerable. There is also some face and neck swelling going on, but each week it seems to be a bit better.

I still can't hear out of my ear. But I am starting to think that I might not ever be able to hear out of it. This tumor is in my temporal area, but it is also on my auditory canal. That is part of your ear that is on the inside, near your brain. I can't help but think, that adds to another reason why I can't hear out of it.

So, that is about all for now. I have been struggling with all of this and thought writing it down, getting it all out, might help me feel better about it.