About Me
I'm out here sharing my story hoping that I can give anyone positive vibes, thoughts, or just be a sounding board.
I was approaching my 54th birthday when my life took an interesting curve. I've always considered myself quite healthy. Always doing the normal heckups, dental, mammograms, etc. no high blood pressure, no sugar issues, a tad overweight - but I'm pretty healthy and active so nothing to be overly concered about. Oh how life likes to throw you curveballs sometimes though.
But on On May 1, 2019 - my life took a interesting turn. I was walking up my driveway from my chicken coop toward my house. Suddenly, in my left vision, it seemed as though my house was jumping 20+ feet up and down - like an earthquake was happening but only in my left vision. I went inside and told my husband I thought I was having a really strange ocular migraine. I sat down and closed my eyes for few minutes. When Iopened them again and looked at my husband sitting in the chair across from me. The only way I can explain it was that h elooked like a piece of paper that was continually folding in on itself. That is when I got really scared and had this strange feeling of impending doom wash over me. Iimmediately called my eye doctor thinking that something was horribly wrong with my eyes. We hopped in the car and starteed the 20 minute drive to the eye doctor. On the way there though I kept getting these weird visions like words typing across a screen and then disintegrating and blowing off to the right. I know, it sounds strange.
About halfway to the doctors I told my husband to pull over because I thought I was going to be sick. He pulled over and jumped out o the car next to me. That was a very good thing because he wrapped his arm around me just as my head went back and to the left and I collapsed andproceeded to have a full grand mal seizure which lasted 20 minutes. fortunately people were passing by and one was aphysicians assassitant. She was able to keep my airway clear as I was foaming athe mouth. 911 was called and I continued to seize until after I was in the ambulance. At the hospital they did a CAT scan without contrast (which shows nothing by the way) an they sent me home. I followed up with my doctor the next day and thank GOD he sent me in for an MRI with contrast. My doctor literally saved my life That MRI is how we discovered Clyde. ...Clyde is my tumor. I felt by giving it a name it would make it less "scary". We can now say let's kill ClydeLet's get him!
So my doctor told me to chose a hospital with a neurologist so I picked Massachusetts General Hospital and Doctor Carter - the head of Neuro at that hospital. So happy I made that choice!!
I met Dr Carter and his teamon May 21st and had nother MRI with contrast and this is when they scheduled my first surgery on May 21, 2019 I know brain surgery sounds all scary but honestly, ti was pretty in and out. I was in the ICU for 3 days - felt fine...no pain. It looks owie, but really nothing hurt. I did have to reamain in the dark for 48 hours though. During my surgery they tried this new dye that made my tumore glow - apparently I am only the 5the person to use this dye solution. Because of it though, it made me very susceptible to gettingburned from simple overhead lighting so no TV, no lights of any kind. See below for the glow in the dark picture.
I wish I could say that was my last surgery - but that wasn't to be the case. Just a week later I started not feeling "right". I felt sick to my stomach and when I stood up I had this incredible pressure on the top of my head. My husband noticed that my left foot started dragging and my face started drooping. I hadn't noticed any of this. We rushed off to MGH where I was immediately on the table for surgery #2. There was swelling and my brain had actually shifted17MM left of center. They pumped me with IV steroids and within a few days it went from 27MM to 12MM. luckily it was all caught in time and I felt so much better after the 2nd surgery. However - it made me angry as well. With each surgery - it was pushing me back 3 weeks before I could start radiation and/or chemo because the surgery had to heal before they allowed the radiation/chemo could start. I just wanted to start attacking this damn thing. I knew it was aggressive and I needed to be just as aggressive.
On May 24, 2019 - I discovered exactly what Clyde was. Clyde is a Glioblastoma - Grade 4. That means that Clyde is Cancer. That,honestly didn't scare me. I know maybe it should have freaked me out, but for whatever reason it didn't. I did ask the normal questionuestion - so what's the prognosis?? Well, do you know it was AMAZING how tiring it made me feel. Fortunately I'm not claustrophobic because I guess that is a problem for some people. The mask is very fitted and they clamp your head to the table so you don't move and they radiate the right area. While there is no feeling from the radiation, they did warn me that I would lose my hair on that side....and indeed I did. So the right side of my head was balding and the left front side of my head had this long blondish white strand. Kinda hookey looking! Now, add that to the fact that because I'm on steroids - my face looks swollen and yup - don't quite look like myself. .. but I know that will slowly dissipate. ,
© Copyright My Ride with Clyde
So as soon as we discovered Clyde was cancer - I was assigned an oncologist and we started talking treatment. Radition - for 6 weeks / 5 dys week. Ok. they said it will make m elose my hair and make me tired. I'm ok with that. The thought of iVChemo was really kinda freaked me out - but, because of the type of tumor that Clyde is - I didn't need to do anIV drip or port. My chemo was all oral. I can't even tell you how happy I was about that.
Yousee, Clyde, even though he is a Glioblasotoma, there are different properties to them as well. I happen to be MGMT methylated which I guess is a good thing because the oral chemo effects this type of tumor better. I'm also DH-1 Wild type. Now, I'm not 100% sure that that means bu I guess that is s good thing as well.
Because Clyde was methlyated I was accepted to a trial with two differnt oral chemos - called CCNU trial
We decided we needed a nice family vacation - in EUROPE!
- Weeach picked a location we wanted to see.
I picked Pompeii - Ray picked Budapest
- riana picked the Colosseum
- Devon chose the Almalfi coast
- And yes.....we saw all that and more! Once I have my pictures loaded, I'll add a link to them here.
We left on ept 18 after my last MRI scan which looked good. Clyde had not grown so that was awesome. Still some swelling but that was expected from the radiation that I had completed.
9/18/2019 - We flew from Boston to Rome. Took a private car from Rome to Pompeii - spent a few hours walking abround Pompeii - took the same car to the base of Mt. Vesuvius where there is a inerycalled the Tears of Christ. We learned a lot about how thewinery works. Because the soil is so fertile from the volcanic ashthe grapers are awesome. And due to the lava beneath the volcanic ash - they don't have to irrigate. tThe lava holds onto the like a big sponge. They also plant roses all around the grapes o if a blight comes - it will show up in the roses first and hey can take action to save the rapes naturally instead o fusing pessimistic. And the wine was incredible! Of course due to the medication I'm on I can only take small tastes - but I did taste every single one! From the winery wewent to our first AIRbnB in Sorrento. It wasreally nice. My son did a fantastic job of planning all the flights, trains, Air bnB's. He made sure that if there was any place we styed that had stairs that it also had n elevator of some type for me. elevators are not overly popular in Europe but he made sure each place had one. hahahah some were kinda sketchy which didn't bother me at all buy he was hilarious about it and always said goodbye when I got in them hahha