Mayo update! April 4th 2020

Hello! Thought I’d give you all an update on Mayo. I was stressing about going. I didn’t want to leave my house w this virus going around. As much as I wanted to hear what Mayo has to say, I figured it’d be more safe for me to stay home and push the appt off. The virus would be a lot more serious for me to get, then the cancer right now..I don’t think I’d stand a chance against the virus.  But at the same time - what is the world going to be like in a month? Will the virus be everywhere? What if the cancer keeps growing and it’s beyond help? I tried twice to meet with my doctors over the phone. But both times, the receptionist said they want to see me. It’s definitely frustrating worrying about this virus on top of having cancer.  Just keep adding things to the list of worries! 

I eventually gave in to going, but I was not staying at a hotel. My kids stayed home with my brother Brendan. My parents and I left at 4am and went straight there and back. We did stop for a bathroom break but took every precaution possible. I slept most of the way there, so that made the drive fly by! 

Unfortunately at Mayo, we didn’t get much info while there. The beginning of the day started with the chemo doc. The first thing he said is, “I’m not sure why I am seeing you. I am still waiting for some scans and the radiation doc is too. There isn’t much I can do. I’ve never seen anyone on the chemo meds you are on and I haven’t worked with them. With some shrinking in your lungs, I feel you should stay on them. I won’t be charging you for this appt since I can’t help you.”  Instantly I thought, why the heck are we even here?! Obviously asking about a phone appt, didn’t get back to the docs!

So after that, frustrated, we first called Aurora about the scans. They said they had sent them 2 weeks ago but will do it again right then. After that I checked in with radiology. My appt wasn’t for 5 more hrs, so I hoped they could see me sooner! She took my info to give to the nurse and asked us to wait in the open area outside of their waiting room. We sat around for a good half hr, then I checked in again. She said they have my info and someone will eventually come talk to me. So we waited some more. Finally someone called my name, and said the doc will see you now. We were so happy it worked out to get in earlier! 

Dr Foote was a nice man and had some good info for us. He unfortunately was still trying to get the scan, so he couldn’t tell me which radiation we would be using. He needs to see each area that has been radiated and what kind, and how much, radiation it was. After he has all that figured out, he can know for certain what we will use. But it sounds like cyber knife, or gamma knife. One of the two I have had before. It’s usually a couple hrs at most. The worst part of it was a headache that night. Much more doable then 6 weeks of radiation and a sore mouth for months! So that was an instant relief. But that was it! He could do no more until he sees the scans. He said I would hear from him later this week, after he has seen them. 

So off we went! Time to head home. I was disappointed that I didn’t find out more but also relieved I could go home! And at an earlier time then expected. 

I laid in the back majority of ride!

The first few days home I heard nothing. On Friday I had an email from Doc Foote, he said the scans were getting mailed to him and he should have them on Monday. Once he goes over them, he will reach out to me.

A bit later I see I have a voicemail from my nurse at Aurora who worked close w Dr Kassam! I had reached out to her about two weeks ago, because I heard she could get me in touch w him. Well she said she did eventually get a hold of him and would like to talk to me about it and said she would call back again later.

After her, the chemo doc called me. He said we figured out what kind of cancer you have. What?! Now - in 6 yrs, I have never had a ‘proper’ name for my cancer. It’s always been called a sarcomatoid carcinoma. Which is basically two different kinds of cancer. He told me it is a Hemangiopericytoma. A form of sarcoma. I asked him if there is a chemo it responds well to? He said when we first got your info, no doc wanted to see you because they didn’t know the kind, but now that they do, my info is going to a chemo doc they have that specializes in sarcomas. Dr Bobustic did say, make sure the doc works with sarcomas. So that part is now on track. And as I read info on this cancer, it does seem spot on! 

Then Kassam’s nurse calls again. She said Dr Kassam would like to get in touch w me on Monday! I will get an email from either him or her, about how and when we will chat. That was awesome to hear! 

So, I felt like I learned a lot more yesterday then I did at Mayo. I’m glad things are finally lining up. Still playing the waiting game, but I am hopeful and heard some pretty exciting things! 

The kids and I have been doing well during quarantine. I had wrote a couple blogs ago that I wish I could hit pause on life while I focus on cancer, then hit play once I’ve had some time. And that’s how I’m looking at this time off. I can get plenty of sleep, focus on my oils and supplements, I have time to cook up healthy meals, smoothies, juicing, etc. I’m looking at it as time to work on myself. I was getting run down and this time at home has been a blessing in disguise!