Updated: Jun 14, 2021
“You are never too old to set another goal or to dream a new dream”-C.S. Lewis
“You’re so incredibly brave & strong!” “You’re so resilient!” These are examples of comments often made by friends and family. These kind words help to keep my spirits alive, thank you! My question for you is, have you ever thought about what you would do if you received the “C” word diagnosis? I honestly don’t think I’m much different than you because I bet you would be doing the same as us cancer survivors... fighting and living the best we can.
It’s important to make choices that support your goals. Should I agree to another surgery? Should I seek out a second opinion to find more treatment options? Most importantly, what do I want to accomplish in life outside my treatment? One of my main goals is to continue living(shocking!) Rather than talking/thinking about dying. I try focusing on staying alive and I think about all of the people and things, all the goals and aspirations that I want to continue living for. I envision myself celebrating all of those things. Flipping your point of view from thoughts of dying to thoughts of living helps to alleviate the anxiety that comes with thoughts of dying. Don’t get me wrong, I definitely have those uncomfortable dark thoughts and moments. But then I try extremely hard to remember how far I’ve come. I think about the things and people that greatly influence the choices I make. If I want to be alive for as long as I can with everything and everyone I love, I will make choices to support that goal. It doesn’t make things any easier to deal with, but it provides hope, which is all I need (a cure would be nice too). What I'm trying to say is if you want to go to a concert? Buy the damn tickets. Have somewhere you've wanted to travel to? Plan it & do it. Whatever it is that you want in life. Figure out how to make it happen! You only live once.-YOLO I' had two fundraisers held for me, One by family and one by my sister and her church. The money raised is to go towards out of pocket medical expenses as well as maintaining a good quality of life. I worry if I make a big purchase then people who donated will get upset. I know I don't need to post it on social media but I enjoy posting pictures and sharing my experiences. It doesn't matter what people think right? I'm Working on that!
Two bucket list items that I was fortunate enough to check off my list so far are: traveling to Europe by the time I’m 30 (accomplished in 2018) & being in the Jeopardy audience while Alex Trebek was still the host (accomplished in 2019). It’s funny how life works, both of these were accomplished prior to my left side hemiparesis and prior to Alex’s heartbreaking passing. If I wouldn’t have done these when I did, I might have never been able to do them. Since my hemi paresis diagnosis, I visited Michigan’s Upper Peninsula (an item on my list). Even if you’re not from MI, 10/10 recommend that you visit it! It’s so beautiful there! Todd and I had planned a vacation in Europe for April 2020, but then Corona happened. As crappy as it was, I DO believe this was a blessing in disguise since well you know…Dec 2019 was wen hemiparesis happened I know we would’ve made it work but it would’ve been extremely difficult having to be pushed around in a wheelchair not to mention how the experience would’ve been for the person
pushing me (Todd). Luckily we’re still young and have plenty of time to travel.
Another accomplishment is that I’m driving again! Pretty sure it’s been at least a year and a half since I last had that freedom. To celebrate, I got a new car! A 2021Volkswagen Tiguan. A car I’ve wanted for a long time. If you’re wondering how I’m able to drive- I went to driver’s rehab, I have a spinner knob on my steering wheel to help with turning, and I have a turn signal crossover bar allowing me to operate the turn signal with my right hand. In order to use the adaptive equipment, you must pass drivers rehab and get approval from the state, which requires a driver’s exam. You also must have the equipment installed from a company approved by the state.
As far as my walking goes, learning how to walk is hard! I used to have Todd walk around just so I could see how his legs and body move. Thank god for my AFO, it’s literally my lifeline, without it I would be completely immobile. I can’t stand/put pressure on my left leg/foot without it. After surgery last June, my foot got more tone (muscles in my foot and arm tighten involuntarily) so ever since then I’ve had issues fitting into my old pink brace. Not only did it not fit, the old brace caused a wound on my ankle bone began rubbing raw and it was EXTREMELY painful! Since then, I’ve had two more braces made. The first one hurt when I would get up and my foot would start spasming if I had it on for a while, as well as, when I would take it off so I got ANOTHER one made that I picked it up last Wednesday. So far so good, cross your fingers it stays that way because I’m desperate for some relief and to stop complaining of pain. I’ve literally been in pain every day for the past year, Not necessarily all day but at some point during the day. I’m so sick of feeling like this and constantly complaining. The shoe thing is another thing I complain about. So far, I’ve only found 2 pairs of shoes that work with my brace. What I would give to wear slippers! I keep meaning to sell my shoes, but I don’t think I’m ready to part with them. Would that be me telling myself that I’ll never be able to wear them again? Probably! That could very well be the reason why I keep procrastinating. They are all 8-8.5, maybe I’ll post them on this site. Promise I have/had a fabulous shoe collection!
Now for my arm & hand. I am still unable to open my hand and use my fingers. My left hand is pretty much always in a fist so it’s pretty useless. From a medical standpoint, the hand/fingers are typically the last to come back, but I celebrate the small victories for now. It starts with the shoulder and continues down. I’m at the point where I find it impressive to watch people do things with both hands and at the same time.
A HEALTH UPDATE: The last clinical trial I was on at NIH failed and I had another recurrence which led to my second laser ablation surgery in January. Since then, I’ve been on both Carboplatin(chemo)&Avastin (angiogenesis inhibitor) both are infusion medications which means I now have a port rather than having to be poked a zillion times. Every 2 weeks is Avastin & every 4 or 6 weeks is Carbo. My last MRI in April looked wonderful! No new growth! Next scan should be in July. Please keep praying/sending those positive vibes – anything and everything helps!
I’ve been working at this site for a while, it’s definitely better than my old site! You have the ability to subscribe for updates (which seem to be very spread out). I always say I’m going to post more but I’m never really sure what to post. Is my life that interesting? You tell me…Or give ideas of what is interesting that I could post about. Looking for feedback here! Hope you enjoy the blog! Be sure to wish my parents happy 30th anniversary!