Hope and Surprising News. Appointment Dec 2017

In the beginning of December I had another MRI, an appt with Doctor Kassam and another appt with Doctor Taylor to go over our chemo options. Stacy came along with me again and we got some christmas shopping in while we were there! We left a day early and drove to Green Bay so we didn't have to drive down one day and back the next. Stace and I always have a good time together no matter where we are or what we are doing so it is always nice to bring her along!

Sunday evening we shopped a bit and relaxed, Monday we shopped some more and then my MRI was scheduled for 6:30 that night. Stace hung out in the hospital while I was in the scan. Luckily Starbucks was open for a few more minutes when we got there so she could get something to drink! The scan ended up being two hours. I felt bad Stace was stuck sitting around for so long but she didn't seem to mind.

The next day I met with Dr. Kassam first. We were in the waiting room for quite a while before we got brought back and then in the room for a quite some time too but we entertained each other and that helped pass the time! I did know too, that I was squeezed in that day. I wasn't supposed to see Dr Kassam for another month and then they had decided to see me before the Holidays.  We were in a little examining room too. Not the usual room with the table and big computer. Stacy was excited to finally meet Dr Kassam! But once we were in this room, I wasn't sure if we would be seeing him and I asked the nurse. She wasn't sure if he would be coming in either.

killing time!

But sure enough eventually Dr Kassam and about 4 others came in. My radiologist, Dr Fukui was pulling up the scans on the computer and Dr K said I think you are gonna like what she has to say! She told us that they believe the spot we are watching is a side affect from radiation. They had talked with my radiation oncologist in MQT and it is in the exact area where radiation was done. The spot has not grown at all in the 8 weeks we have been watching it. (Since my first scan after radiation was over.)  And now that I think of it, my radiation oncologist had requested a copy of my scans, told me from what they have described, it is radiation that they are looking at, but he said once he got the scans and looked at them, he would call me if he thought something concerning was there. And he never called.  Dr Fukui also explained to me that the spot we are watching is much smaller then it looks to be on the scan. So both doctors were really happy about it and told me to go home and enjoy the Holidays and we will do another scan in two months!  I loved the idea of being able to wait that long before coming back! I did hear from him since the appt, and I am going to have an MRI done in a month, but that one will be done here.

See the little dark line by the arrow? It goes
across the whole blob. That is
where the area they are watching ends. I
originally thought it was that entire
white area!

Checking out the scans while
waiting to be seen!

Right away I felt a huge weight lift off my shoulders. I can't say I was instantly relieved, I needed time to process this new news. It was completely unexpected. I've said this many times but I feel like we come out of his office dumbfounded. Always hearing something that we did not expect. And this time, it was a huge positive thing that we heard! It was so great to hear that rather then another negative. Once we got out of that appt we had about 15 minutes to grab food from the little deli before heading up to the next appt! At this point, with the news I just heard, I was really hoping that that meant I did not have chemo starting any time soon.

We waited again for a while and then came in Dr Taylor. We went over my PET scan from  3 weeks before and the Foundation 1 testing they had done. The testing came back with a few things that I was compatible for, but none were great options. 5 of the 6 options were trial drugs and they were all in phase 1 of testing. That means that they have been tested on animals and next it would be tried on me. And only a handful of people even get to try them out. Usually under 30. The other was in phase 2, but he didn't go over that one with us and I'm not exactly sure why.  He must not have liked what it was all about. But in the end, he told me that since the Neuro crew is not worried right now, there is no point on treating me with a chemo right now if it is only going to make me sick. What exactly would he be treating me for if the brain tumor is actually just from radiation. Again, I was so relieved to hear that!

Then he went over the PET scan. One area on the scan concerned him. And it is actually hard to see on the PET scan so he pulled up the x-ray pictures I had done 3 weeks prior. My lungs. They have little spots on the outside of them. At this point they are too small to biopsy. In a month I will get another x-ray done (here at home), and then one more a month later before I go back down to Milwaukee for my next MRI. We will see if they have grown at all and will go over the scans then. It concerns him because they are round. Most infections or anything of that nature on the lungs, are not round. But of course without them being tested yet, he does not have a straight answer for me at this time. He did say, either way, they are harmless at this point.


SO. Here we are again. Playing the waiting game. The first few days after I got home, my lungs were on my mind a lot. I was so happy to hear the head news, but now I have this to worry about.  I wish I had NOTHING to worry about.  Even if it was just for a short while....  But at the same time, at least right now I am not worrying about my head and my lungs. I did take a huge step forward at this appt with just a baby step back.  We will cross that bridge when we get there. In this moment I am going to enjoy the fact that I do not need to get chemo, that I can continue to work and continue to get stronger. I have been doing my yoga and eating more. My mouth no longer hurts me! (Unless I eat something spicy or carbonated.) 18 weeks I had a sore mouth. Good thing I had no idea going into radiation that it would hurt for so long.  I was putting off planning my spring trips along with a lot of other things because I thought chemo was going to be happening.  So I just see it as a huge plus that I can keep on living my every day life. This appointment put some hope back into me! Even if it is just for the moment we are in.

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.