After searching and reaching out to people for quite some time, I finally got to talk with Dr Kassam!! It was amazing just hearing his voice! We will not know where he is going to be for about six more weeks. He had told me that he is happy I chose to go to Mayo and he is going to reach out to a neurosurgeon there who specializes in removing my kind of tumors. Just in case we need that down the road. But we both agreed that I will continue with Mayo and if in the future I need to travel to where Dr. Kassam is, I will! ❤️ Just knowing I still have him on my side is an awesome feeling! That same day Dr Foote, my radiation doc, called me and he said he finally got a hold of my scans, all looks good and wanted to set the radiation appt up. That was a relief in it's self, because I wasn't sure if after he saw the scans, I had room for more radiation. He had an available spot the next week, but I needed a bit more time then that to prepare mentally so I picked the week following that one. I would also get a head MRI and a chest CT while there. Monday will be dedicated to scans and appts, and Tuesday will be radiation.
My parents came with me again and my brother Brendan was at my house with the kids. It has worked out perfectly with my brother at the house. I think its a "change of scenery" for everyone when he is here with them! We had to be at Mayo for 7:30AM on Monday morning to start my appts, and radiation was on Tuesday, so we knew a hotel stay was inevitable. We left Sunday afternoon and got there about 7. We went straight to our hotel, and once in our room, we all spent some time sanitizing and then relaxed after that.My parent's packed us some food to have in our room. My Mother might have lucked out at getting her hair colored that night too!
Our Hotel was right across the street from the hospital, so Monday morning I headed over there for the MRI and CT. They are still letting one person go into the hospital with you for these appointments, but I figured there was no point when I was going to be in the scans anyway. So I crossed the street and was at the exact entrance needed to be at, easy! Except it was closed due to the virus! I keep walking, find a new door, closed again! Omg. Finally I find a bigger entrance and get my hopes up! Only to be locked out again! But, this one had a speaker for mother’s in labor to hit. So I hit it! Haha. And explained to the guy that I didn’t know where I was and where to go to get inside. He gave me directions, I wasn’t very confident in them, but I made it! I first had my MRI and then the CT. Both scans went very well, they were shorter than what I have been getting so that was a treat!
When time came to actually meet with a doctor, my Mom met me in the hospital. We first met with the Neuro who helps with putting the frame on that I’ll wear. Dr. Pollock was great! He explained in detail what we will be doing in radiation - He told us that we will start w radiation and look into surgery after if needed as last resort. Why open me up now if this can get the job done. The best piece of info we got from him (actually from anyone over the two days, I think) was this - He said to us, he can’t make any promises but with the kind of tumor I have, the radiation we are doing usually reacts super well to it. 70 something percent of the people w this cancer, the tumors DISSOLVE over time! It takes up to 18 months for the shrinking to happen. Wow! It was so great hearing something hopeful!! I have been hanging on to that bit of information since hearing it! He then explained that I will get many tiny doses of radiation, but they all lead to the tumors. So the good brain tissue isn’t damaged as much as it would be. But the tumors still get a big dose of radiation. When I show up the next day I will get into a gown and hooked up to an IV and a calming med. The titanium frame is first put on, he said they will inject lidocaine and then put the screws in and after that I’ll have another MRI and a CT. Then they will map out the radiation using the scan photos and the frame on me head. Areas that have been radiated previously, do not get it again. Luckily there are paths to take that have not been through radiation before. Once the mapping is done, we go into the radiation room, I lay on the table and the frame is locked in. They then start the radiation and mine will be about 90 minutes long. They can range anywhere from a half hour, to about 3 hours. I think back to my Marquette radiation - I went 5 days a week, for 7 weeks. Each dose was about a minute, so overall I had about 35 minutes of radiation. And in ONE sitting here, I get 90. I know they are different forms of radiation, but I still think that’s crazy! And so much easier!!
Once we finished going over everything with him, we moved on to the other appointments. First I had a blood draw. Next up was meeting the new Oncologist. He specializes in sarcomas so he is exactly what I need! I had not googled him at all prior to the appt, actually I didn’t know his name before that day, so I had no idea what to expect. Well, in walks this young good looking Doc! 😂 Dr. Robinson. Everything went great with him! He wasn’t in a rush and explained things really well. He first had me go over my entire cancer history. Then he asked about my side effects on the chemo meds I had been on previously. He said he is going to use one of the chemos I’ve already been on, but differently then how I’ve taken it before. It’ll be a lot stronger dose, but only one med and not a ton through out the day. Of course a higher dose doesn’t sound very appealing, but, I love the idea of not keeping track of numerous pills each day. I will not be starting chemo quite yet, he wanted to wait a few weeks out from radiation. He also explained that he would like me to get in touch with our cancer doc here at home. That way, I can run in for labs, an IV, prescription refills, anything needed. But my Mayo doc will still be the one calling all the shots! The whole appt went super well, I felt like we had a good connection and that definitely put me at ease.
After that appt, I met w a nurse to cover some questions and paper work for the MRI the next morn. When finished, we had about 45 min until the next appt and I was tired and hungry at this point! It’s probably about 4 now, and I stepped in this building at 7:15am! The day had flown by. So we walked over to our room and quickly ate some food! With the virus right now, you need a mask on 24/7 in the hospital. So going back to the room was another bonus because we could rip that mask off for a while! I give credit to every health care person who wears them. They are hot and constricting! Some scans I had to wear it for and some I did not. But the room has to be aired out for a certain amount of time after you’ve been in it, if no mask, and I hated to do that to them so it was on most of the time!
My Dad came back with me for the next appointment with Dr Foote. My Dad had not been in Mayo yet, because each time only one person could come with. So this was a perfect time to swap parents! Dr Foote is the only doctor that I have seen before so it was nice seeing him again. He went over more of radiation with us, including side effects. I may have a headache from brain swelling, a lot of people have swelling in their face and eyes, and their eyes turn black and blue. I may be fatigued, have no appetite or be nauseous. The screw incisions will be sore and possibly tingly. Any of this seems like a walk in the park after the painful mouth from the Marquette radiation! He then explained the times that everything will be happening the next morning - I needed to be there for 5:30am. And we should be done about noon. That sounded great to me because then I could be home at a decent time! St. Mary’s is the hospital building and no one is allowed to come in with me there. I was okay with that though. I knew I’d be in and out of scans the whole time and wouldn’t be around anyone as it was. Or in the moments I could be with someone, I'd probably be groggy anyway. This wasn't my first rodeo so I wasn't worried about being on my own! Haha
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I had multiple masks
throughout the day. Some
with metal in it, and
some without! (Depending
on the scan.)
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Appts were finally done! I was mentally and physically exhausted after that day! That evening I relaxed and tried to fall asleep at a decent time since my morning was starting bright and early! No eating after midnight and only a sip of water by morning. I forced my parents to go for a walk or to do something because I felt bad that they were cooped up all day either in the hotel or hospital. There are some neat trails to walk that aren’t too far away and they went to one of those.
The next morn my Dad dropped me at the hospital. I was in my room changing into a gown in no time. They got the IV of fluids going, gave me the calming med ,and before you know it - it’s time to put the frame on. Dr. Pollock and a few others were in the room. After feeling my forehead - where the titanium plate meets my skull bone - he decided to change up the frame. He didn't want to be putting a screw in the titanium if not needed. This frame they like to call cyclops. The cyclops only has one screw incision in front (hence the name), and two in the back. And by using that frame, the titanium will not be messed with at all. First they put the frame over my head and balanced it by resting some plastic posts in my ears. Once the frame is lined up correctly, the first lidocaine shot goes in, then the next two. I could feel it going in, and then a stinging feeling as the numbing meds spread out, along with hearing some crunching noises! The screws go in next. I heard noises but didn’t feel any pain. There was definitely a pressure feeling but over some time that went away too. Most people must ask for a picture because they had a Polaroid on hand to snap some pics! The first photo below is of a stranger with the frame on, with all of the pieces added on. They fit the base onto me, and then add different pieces to the top depending on the scan I am in. The second is my little polaroid pic with the cyclops on!
Now it's scan time! The MRI and CT were both very short! Then back to my little room while the mapping happens. I’m kind of groggy by this point, took a couple selfies with the frame on, and tried reading my book. Reading wasn’t easy because not only was I a bit loopy, but the frame covered one eye so I needed to have my head tilted in a way just to see the book! 2 things got brought up often throughout being in the hospital - my nails, because they looked so freshly done. Lol. (I have done my own at home for years!) I had to give a few people tips on how to work with what they had going on right now. And the other thing brought up is the book I’m reading, Where The Crawdads Sing. Many people commented on that including Dr Pollock who just finished it! It is super good by the way!
Before I knew it, it was my time to go in. The radiation machine looks similar to other scans. I laid on a table/bed and the frame was locked into the top of the bed. There wasn’t a headrest because the frame held my head in place. The bed was adjusted so my neck felt comfortable. I’d be laying there for the next 1.5 hours. I knew by this point that I’d sleep the entire time, and that’s exactly what I did! The scan was nice and quiet, and I didn’t feel a thing. The only bonus to wearing a mask, was when I was passed out, I didn’t have to worry if my mouth was open or anything! Hahaa.
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The back had one
on each side.
|
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| Side view |
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Close up of the
frame screwed in!
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Before I knew it, it was my time to go in. The radiation machine looks similar to other scans. I laid on a table/bed and the frame was locked into the top of the bed. There wasn’t a headrest because the frame held my head in place. The bed was adjusted so my neck felt comfortable. I’d be laying there for the next 1.5 hours. I knew by this point that I’d sleep the entire time, and that’s exactly what I did! The scan was nice and quiet, and I didn’t feel a thing. The only bonus to wearing a mask, was when I was passed out, I didn’t have to worry if my mouth was open or anything! Hahaa.
I woke as they entered the scan room, then I was wheeled back in my bed to my little room. I was under observation for a while, they came and took the frame off and wrapped me up. It didn't hurt removing it at all. If anything, some pressure was lifted. I also got a dose of steroids in the IV. I could now start eating and drinking too. Eventually they let me change into my clothes, and a bit later I was free to go. They wheeled me down to the entrance and then I hopped in my parents car when they rolled up. And home we went! It was noon Mayo time.
I was super tired at this point, but never fell asleep. The whole ride home! It just felt so good knowing something was ‘injected’ into these tumors. I think I was on some sort of a high. Even that night, it took a while to fall asleep and I was up at a decent time the next morn! Between the ‘radiation high’ and getting the IV fluids and steroids, I was feeling full of energy! The whole car ride, I was waiting for a headache to start. I remember the one I had after Cyber knife radiation and was expecting it to come again. But it never did! Here we are, 4 days out and I never had a headache. My forehead has a bump of fluids, and it slowly made its way to the inner part of my left eye. But never to the point where I couldn’t see out of it. And no black and blue eyes either! The incisions are sore but as long as I don't touch my head, it's fine! I was very fatigued the first few days, I laid around a lot, but never to the point where I needed a nap. I noticed my brain was working slower then normal. I’ve been working on this blog for days y'all! It’s been harder to get the words out. But each day is getting easier. After a surgery, the first 48 are the worst. Swelling peaks and what not. They call this Gamma Knife ‘Surgery’. So I was thinking, maybe after the first 48, things will start improving. I was close but about a day off, today I woke with no new swelling, and the swelling that is there, has gone down! My forehead still has a slight bump from the fluids but that's also starting to go down too. It’s been nice! Very happily surprised with this recovery. I’ve even asked myself if I really had the radiation?!
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| Shortly after getting done |
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The ride home. Kept my
head on an incline
for days!
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This was day 2 and I
expected to look
much worse! This
should be the "bad" eye! |
Having this done while during quarantine has been great. I don’t feel pressured to get back to work, I’m not missing out on anything fun. It’s been easy to take time and heal. 3 months from now, I’ll be going back for scans. We will see if the radiation has started doing it’s job, and if I've responded to the chemo at all. I’m relieved to be where I am with all of this, I think every appt went great. I’m glad Mayo had an option for me to try. I’m glad I’ve met some great doctors. I’m glad I also have Dr Kassam in my back pocket! Just knowing that something is in these tumors, trying to shrink them, gives me the peace of mind I've needed for a quite some time! And now, its time to continue the healing and hope & pray for the best!
