You can read this blog or know me a little and know I’ve had some loss. Andy has had some loss. These losses have certainly helped shape my adult life in a couple of ways. I’m a little terrified of aging. I am consistent and follow all guidelines for health prevention, I take care of myself physically and mentally. I exercise, wear my sunscreen, eat my fruits and veggies…. you get it.
This was all to avoid the diseases that live in my genetics and our environments. The ones that ‘family history’ tells me to watch out for: smoking related cancer, heart disease, mental illness, skin cancer, breast cancer….etc. You get it.
Read back two posts and know that those concerns, while not unimportant, were not the things I should have been fearing. I could not have guessed the things I should have been worrying about, even if I tried. So this begs the question: how much energy have I spent worrying about things needlessly and what do I need to let go of today? How about you?
I’m moving beyond health; I’m talking about life! How will knowing that I can’t control everything shape my behaviors moving forward. Will I speak my mind more? Will I take more risks? Less? Will I worry more? or less? Right now, I don’t know the answers to those questions, but they are the questions that are keeping me up at night.
What does life look like on the other side of these health issues, this summer? What do I need to learn? Because one thing I know for sure, I have been worrying about the “wrong” things from time to time. AND I want to do everything I can do to live my biggest life vision. AND I want to AVOID being back here anytime soon. So, in the spirit of BLV, I want to be sure to learn something and share with you.
What do you think?
HEALTH UPDATE BELOW
For those wanting an update on my health journey, today is day 9 in the hospital. (17 so far for this summer.) I have one more week ahead. I’ve had two surgeries, this month. I have been administered so many steroids, so many IVs, so many drugs to treat me, so many reactions to drugs, so many drugs to counter the reactions, so many MRIs and CT scans….All to figure out what’s going on, how to treat it and eventually convince my body to stop attacking itself.
Remember, these are two separate and different diseases, just diagnosed at the same time. Lucky me!
Cancer = Clival Chordoma = small self-contained tumor
Autoimmune = MOG = Optic Neuritis
Ultimately, the optic neuritis may be the thing that stopped the chordoma from spreading and causing trouble. Ironic, no?
Let’s start with the cancer. I’ve had to work hard to even call it that. I don’t want to have cancer or be a ‘cancer survivor.’ I don’t feel like a survivor, I just feel like a broken version of me. And frankly this summer the cancer is causing me less trouble than the other stuff (that would have eventually changed, I know). The second surgery went really well. We’re waiting on pathology to know if I will require radiation. If I do, okay. Fine. If I don’t, I kick off a life time of CT scans to monitor all the places chordomas may show up, so we can always stay ahead of this particular challenge. Fuck you cancer, I have my eye on you!
Honestly, the two surgeries to remove the chordoma have been a bigger inconvenience than the cancer itself. All of it has just complicated my overall health care plan. I am juggling a number of specialists (3 / 5 at any given time) who are working to solve the parallel yet separate challenges they are responsible for treating. Toss in an internal medicine doctor, few new residents and fellows, and well it’s complicated.
So if the surgery was such a raging success and I’m recovering well, why am I still here? MOG. As I mentioned in my last post, I was experiencing a flare of the optic neuritis the day before surgery. When I arrived for surgery I had only about 5% vision in my right eye. Yep, blind in the right eye. It’s as scary as it sounds and it was the 3rd time this summer.
Immediately after surgery they began to treat that too…First with another around of high dose steroids through an IV and now Plasmapheresis, through a catheter. They do this by pulling my blood out of my body, cleaning it of the rogue anti-bodies, and putting the good stuff back in. The hope is this gives my body the chance to respond to the long term treatment, heals the damage to my right optic nerve restoring full sight (we’re almost there) and gets me feeling more normal than I have since the first of June. Fingers crossed.
The other thing that is keeping me up at night is what DO I need to be reasonably afraid of. When I leave here my immunity will be compromised, what level of concern and fear do I need to take into the pandemic world? How do I plan around the treatment and health implications that are part of my life now, do I need to reconsider behaviors, travels, anything? Still working that out too.
So for today, more questions than thoughts. But that is part of the journey.
I am grateful for all your love and support.
I am GRATEFUL!
Sending love and healing, Kimberly. You are incredible so I’m not the least bit surprised that your body is doing incredible things too. ♥️
Keeping you in my thoughts.
Thinking of you often! Always hold you and your family near and dear to my heart. Hang in there.
Dear Kimberly,
You have love for and are loved by so many. As with your many ljourneys, your connections want to be by your side, hoping some of your bad-assery will rub off.
You have a history of taking care of everybody you meet and now it is beautiful to see us here to give to you, our love energy in full force. I can’t wait to walk down the street and see you relaxing on your porch soon.
Love you.
Thinking of you Kimberly and what you are going through. How about if a nice Jewish girl (ME!) adds you to the healing prayer we say in synagogue. Figure it can’t hurt to be covered on all sides. Want your permission to say your name out loud (virtually right now in a chat). May you have the strength you need to overcome this and be surrounded by those who love you even from afar. Roberta Scharf
I welcome it Roberta. I married a nice Jewish boy, BTW. Thank you.
Love and friendship (and a few doctors and nurses) will get you up and running. Life is always about what we CAN do. Not what we can’t.
I know what a warrior you are. My days on the college softball field with you showed me that. So many of those lessons come in handy in life. Know I am in your corner praying and rooting you on. As someone who spent a lot of time worried my two cents is don’t waste time on things that may or may not happen. When you do that you are robbed of the present. It bad stuff happens deal with it then you don’t want to live it twice. Sending you live my friend.
Kim, You are a warrior and I know you will overcome these challenges. I have an autoimmune disease too. What I have learned to embrace is the fact that seeing doctor’s as frequently as I do won’t allow for much growth of anything in my body that shouldn’t be there. I think it’s all about the team that you have chosen to watch over you as you proceed down this path. I have no doubt that you were very mindful in making the choices. Remember to laugh and love with your whole heart and all that you have. You’ve been blessed with a beautiful family that many people never have. Love you friend and always here if you want or need to talk. Hugs, Julie
Your insight on worry is spot on. I’m sure I have said this to you, and here it is again… My mother often said, “worry is prayer for bad”. That didn’t stop her from worrying about all the wrong things. I don’t worry a lot, I do my best and let go.
Thank you for being brave enough to write about your experience. It totally sucks! And I hate cancer! I’m sending you so much love and healing energy<3
So sorry for all you are going through. Sending healing thoughts and white light.
Your BLV, bravery and general badassness are REMARKABLE!