Mark Twain

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do ...
Explore. Dream. Discover." Mark Twain

Tuesday, May 23, 2023

A break in the action

The last few weeks have been a roller coaster ride.  This week is an appointment free week.  As much as I really want to move forward, I am glad for a break in the action.  I need to get my brain and emotions in sync.

But while I am on a mini-high right now, my CT results came back: normal for my age.  Bones show age related degeneration and some arthritis only!  Beautiful words.  A month ago I would have fretted over those results. Not now.  It is all about perspective!  Now I want nothing more than to be “normal for my age.”   (But I do have to keep up those leg and back exercises.)

Other thoughts have been taking up space in my brain.

?? A Preferred Cancer List ??

To start ... if you have to get cancer, I guess kidney cancer is pretty high on the “preferred list” if there is such a ridiculous thing as a “preferred list” for cancer.  It can be cured with the swipe of a surgical knife.  You have a back up kidney, and one kidney is actually plenty to live a normal life. Renal Cancer doesn’t spread fast.  My tumor is large so it is hard to know how long it has been sitting in there with plans to spread its wings.  Still - the feedback so far is that it has not spread. 

Even with all those positives (?), it IS a Cancer!  It can hide for a long time and it can spread. I got lucky - it was found, but I want it out (... like yesterday.).  If it has spread I am ready for Oncology (... like yesterday). Give me those drugs.  Give me that radiation.  Sign me up for all the weapons of medical “war” that science has to offer (... like the day before yesterday!!) Can you tell that patience is not one of my virtues?

The Real Me

The real me - (the "cut it out, poison it, burn-it-to-the-ground" me) - that me hasn't changed one bit since I was in my 20s. I am an Aries** through and through. Stubborn, hard-headed,  opinionated, etc.  My kind of personality is hard to be around sometimes!  But in a “fight”, it is good to be an Aries.  

For example - I experienced a cancer scare 6 months after the birth of my son when I was 26.  I discovered a lump in my breast.  My doctor said I was too young for cancer.  (I bet they don’t say that any more.). Back in 1974 you entered the hospital the night before for a biopsy and you signed away your breast the night before surgery, because if the biopsy came back positive ... as you lay on the surgical table, they did the mastectomy before you woke up.  That night before the biopsy, a nurse came to my hospital room to prep me for surgery.  She asked me how I felt about maybe waking up with only one breast.  She was young - like me - but I remember telling her, “They can take the whole right side of my body, if it saves my life.  I have a son to raise.”  “Good answer,” she responded.  It wasn’t cancer then.  It is cancer now. I feel exactly the same today. My Aries traits will serve me well.  

The Me I Know 

I have worked in medicine most of my professional life - administratively mostly, but enough to know the short comings and strengths of medicine and the people who make these life and death decisions.  I am not in awe of doctors. I greatly respect their knowledge and training, but know they are people just like me, and they can make mistakes in judgement just like me.  Mistakes get made when you are over worked and fatigued.  

I believe medical care and decisions should be a team event: the patient or their advocate and the doctor.  I was my mother’s advocate for 8 years and many of my interactions with medical professionals were confrontational because some physicians didn’t function well as team players.  I challenged some decisions (or lack of them,) demanded further explanations until I understood, asked about options not offered, and made damn sure that my mom got the very best of what modern medicine had to offer while minimizing difficult procedures that would not benefit her in her fragile health state.  It was a balancing act.  I often felt like a warrior with the sword and shield on her behalf. They had to go through me to get to her and I did speak my mind without a filter.  (Aries ... another trait.) I was not out to make friends (and often didn’t), but I did get what she needed.  

 The Me I Don’t Know

This whole month I have wondered just where that “warrior” person has gone.  I am not good at being the patient and the advocate simultaniously for myself.  My husband isn’t good at this either.  Of course, two BIG differences between my mom and I are that she had dementia and could not speak for herself, and she had fragile health and would not benefit from unnecessary testing that would lead to a surgery that we would not do.  I have no mental limitations, and I am younger and healthier than she was - so I should be able to speak on my own behalf.  Mom needed an advocate. I should not.  BUT it is hard work to think and evaluate when your head is spinning.  Hard, hard work.  If this whole experience goes past Urology into Oncology, maybe by then the shock will have lowered a bit - and the “Aries” me will start to show up more frequently on my own behalf. 

Knowledge Is Power

Finally, I have a cousin who has been an RN for a very long time. Currently she is a Nurse Navigator and has experience working for patients as they wade through the medical establishment in pursuit of care.   In sharing this news with her, she sent me the NCCN Guidelines for Patients - Kidney Cancer Guidelines.  This very informational book created for patients provides all the details related to kidney cancer and the questions for doctors.  When I first got it - I was in the “I have a cyst” phase of my journey.  I did open it and began reading various sections - but as I skimmed through it - it made me a bit uncomfortable.  I was uncomfortable enough to close it thinking ... this is serious stuff. I set it aside because I had a cyst - not a tumor.  No need to upset myself.

The “I have a tumor” phase has begun.  Time to start reading and getting familiar with exactly what I have.  My personal comfort level now has no bearing on this situation.  I need to be armed with information.  

This could be a “war” and my Aries self needs to know the enemy!  

** I am not a believer in Astrologic signs.  But I can’t ignore the similarities between my personality and the Aries traits. I remember a conversation I had with my daughter on this subject.  She observed just how much her Astrologic sign matched her personality.  I read up on my sign.  I didn’t like all the “bull-headed” observations of the Aries Ram sign.  I observed that I wasn’t all those things!  She just smiled and said, 

“Oh mom, you are such an Aries!” 😂😂


Leftycrafter said...

Hopefully. Reading your thoughts helps some who may be facing a similar situation. You describe the whirlwind thoughts and feeling so well. Our family has gone through this a few times and you have expressed my feelings and thoughts exactly. I was not the patient but was very involved in the roller coaster ride.

Michelle said...

Ha; I'm not an "Aries" but you sound an awful lot like me! I just call it a "Type A" personality, or "First Born Syndrome," or strong-willed. It's just who I am. And yes, it WILL serve you well, just as you served your mom well. And I get it about the 'preferred cancer list.' When my husband had his heart attack almost 13 years ago, I was told it was "the good kind" of heart attack to have. Still leaves you waiting for the next shoe to drop, though!

A :-) said...

Once the word cancer shows up, time seems to compress and everything speeds up. I'm glad you're getting little respite at the moment. I think that it's very different when you are an advocate for someone else - you can focus in a way that's not really possible when you are the patient. When what is happening is actually happening to you, a lot of your energy has to go toward all the feelings that come with a cancer diagnosis. So glad you got a booklet with good information - there is so much crap on the internet and most of it is not only upsetting, but not applicable. As you begin to prep for surgery, this book helped me a lot: "Prepare for Surgery, Heal Faster," by Peggy Huddleston. I ended up buying the guided imagery download, too, and it was well worth what I paid for it and helped me a LOT. Also, Peggy Cappy's Healing Light Meditation helped me.

Here is a link to Peggy Huddleston's website.

Here is a link to Peggy Cappy's site for that download:

Wendy said...

I'm glad that you have a bit of a breather to try and get your head around all of this. And that you haven't lost your sense of humour.

Retired Knitter said...

Great thoughts and suggestions. Reminders that many have walked this path before me is good. My sister is a transplant surviver and I constantly remind myself that she faced far worse health impacts over a greater span of time that I do today. I have downloaded the Preparing for Surgery book to my Kindle. While this is not my first surgery by a long shot, it is a surgery at an advanced age. And as far as my sense of humor, yes, it is still alive and well. Thank you all.

Cat said...

Glad you are getting a respite. And yes, it can be very hard to be both an advocate and a patient. Pretty much opposites, in a way, I need to stop and demand information and get someone on the same page as I am, but I also need to trust that the medical person is on the ball and going to do a good job! :/