Gathering My Marbles….And My Thoughts

by Sarah

I’ve had a few days to process the findings from my appointments at Mayo Clinic.  I still don’t feel anything significant.  No feeling of relief, no elation.  Just what’s next because there are always challenging circumstances and tough decisions to make after these types of appointments.  This time, I get to make decisions based on good results.  For the purposes of this post, and my sanity, I’m going to stick to the results of the scans and not go into the decisions that I now face.

Other Sarah accompanied me to Rochester on Sunday and I had a fun time hanging out with her despite the reason for the trip.  We have a long history and she knows how to handle me; when to back off and most importantly, not to take things personally if I get snappy.  There is a lot of raw honesty and humor between us.  Those who know me understand that I’m inclined to go on these trips alone and get indignant when people tell me I need someone to go with me.  No, I don’t.  For a variety of reasons.  I don’t like inconveniencing anyone else.  I can drive as fast as I want.  I don’t have to be concerned with anyone else’s needs for the duration of the trip and I can just focus on the tasks at hand.  I can handle whatever happens in the appointments.  I don’t need moral support.  That said, it was good to have her along.  Like a girls weekend getaway minus all the scans and cancer nonsense.  She thanked me for allowing her to go with me. Um, yeah.  You’re welcome, Sarah.

Leading up to the appointments was tough for me.  As I’ve said before, I’ve gotten good at compartmentalizing but it was time to finish my toughest research and preparation and look my potential circumstances in the eye.  I needed to be ready to talk about a host of topics with my doctors.  I respect my doctors and their opinions but they are not the last word on treatment.  I am.  I’ve been looking into treatments that are not currently standard of care but have some impressive results.  Unfortunately, most people who seek these out have exhausted all other conventional means of treatment and are in bad shape.  It’s hard to read their accounts when you don’t have cancer but knowing that this could be me someday was grueling to read in detail.  I also went back and reread some of my reports and found some new ones I hadn’t seen yet.  That was emotionally debilitating.  If I was reading those reports thinking that it was someone else, I’d have written that person off.  Dead man walking.  There is a lot of dire verbiage and besides the widespread invasiveness and destructiveness of the cancer, the surgeon was questioning what he could do for my leg and hip.

I was not nervous leading up to my appointments but I did feel the gravity of the situation.  Instead of Death just hanging out with me, it was in my face, taunting and antagonizing me, relentlessly.  Not just Death.  Death doesn’t incite the emotional reaction in me that the potential for pain, suffering and a debilitating demise does.  Repeatedly seeing news articles and tv segments regarding Brittany Maynard’s decision to end her life rather than suffer a horrible end from brain cancer, and the ensuing debate over her decision and action, was also hard for me.  It was like being punched in the gut when I was minding my own business, just cooking some dinner.  It would sneak up on the tv or unexpectedly face me on my computer screen.

Monday started on the Ortho floor with x-rays of my hip and leg.  I like looking at all the stuff.  Here are some crappy pictures of the waiting room.

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Naked Bones

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Musculoskeletal System laid over the top of Bones

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Peek Inside

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If I ever get my hip replaced, I want the extra-shiny upgrade.  Pretty sure it’s faster.

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I think I can troubleshoot my own hip by looking at this.  I have a big catch when I engage a certain range of motion.  I had Other Sarah feel it and the look on her face would’ve been entertaining if we weren’t talking about my leg.  Quite the look of shock and awe.

The waiting room was full but once I got in, the tech was speedy with the x-rays.  She even told me I could keep my short pants!

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Next, on to Nuclear Medicine for a PET scan.  He was speedy and efficient and had no trouble with my veins unlike the nurses in Des Moines.  Sitting and waiting for the nuclear tracer to go throughout me is an unusual experience.  You sit in a dark, quiet room by yourself with no stimulation.  No phone, no talking, no tv, no reading.  I had quite the parade of thoughts and emotions.  At the 45 minute mark, another guy came to get me and led me to the machine.  20 or so minutes getting my innards scanned, and ultimately determining my fate for the short term, and he sent me on my way.  We even had time for lunch!

Back to the Gonda building.  The nurse took my vitals and then left us unattended in an exam room.  I proceeded to inventory the contents of the room and took a few things for test drives.

I met with the surgeon first.  He is a man of few words and even fewer expressions.  We looked at the x-rays and he seemed pleased.  I’m impressed at the precision of the placement of the titanium, especially in my femur.  It looks perfect.  Knowing that they were doing all of it through a new hole in my arse and getting it precisely right down to my knee…..yeah, impressed.  I got to see pictures they took during surgery of the hole they worked through while it was open. I also got to see the mushy tumor they dug out that had been feeding on my leg.  Knowing everything they did; placement of rods, filling with bone cement, and ending up with a functioning leg is amazing, really.  He examined my “catch” and we determined it was the top of the rod in the femur sticking out a few millimeters and the connective tissue catching when it rolls over the top of it.  He wasn’t concerned and told me of a few options to address the pain.  I’m OK with the pain for now as long as the titanium isn’t sawing through the tissue every time I bend my leg.  I don’t want my leg to fall off as I’m strolling through Costco.

He then pulled up my PET scan to read the findings and look at my leg.  I jumped off the table and hovered over his shoulder.  I’m not shy about this stuff.  These are my scans….it is me they are referring to and why everyone is here.  The first sentence started “Excellent response to interval therapy…”  He and I both continued to skim the verbiage and then he pulled up the scan.  He wanted to see my leg.  I wanted to see everything.  There were no bright colors in my leg.  There didn’t seem to be any bright colors anywhere except my brain, which is OK, although Other Sarah didn’t realize this and I think had a moment of terror.  At some point Dr. Sim even let out a quick chuckle.  I think that was his equivalent of glee.

He said he’d retrieve Dr. Loprinzi and disappeared, leaving Other Sarah and I.  She was ecstatic.  I was pleased but subdued.  Since he left the screen open to my scans, I started pulling them up to see what I could see.  Other Sarah alerted me to noise in the hallway so I quickly took my seat like a good little girl and pretended I wasn’t nosing through my scans or anything else.  Dr. Loprinzi entered after a quick conversation with Dr. Sim.  He knew things looked good and his mood reflected it.  We went over the scan and findings in more detail.  When compared to the scan done in July, I’d estimate about a 95% reduction in the active cancer.  Words such as “regression” and “decreased” were used in the report.  All the spots in my legs, hips, vertebrae and all but one rib showed no activity to the naked eye.  There are a couple of spots that remain but they were green instead of red which means decreased, although persistent, cancer activity.  These are also the spots that had some of the greatest degree of deterioration on the initial scan so this didn’t surprise us.

What does this mean?  The cancer is responding to the treatment.  It is still there but most of it is not “active”.  I still have holes in my bones but some of them are starting to heal.  Overall, this is excellent.  About as good as it gets for me at this point.  My orders are to keep doing what I’m doing and that got little argument from me, for once.  I still have some pain; it never completely goes away.  My leg gets stiff when I sit still.  But considering what I’m dealing with, I can live with it as long as I can continue to care for myself as my body and mind dictates it.  I think I feel about as good as I can under the circumstances.  I’ll take it.

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Sarah Squared in front of the Gonda Building.

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Post results smile with the Gonda Guy.

The next day was Veteran’s Day and I was able to spend it with my parents as I have for many years.  We go out for a free breakfast at Hy Vee which enables my dad to be in the company of many other veterans.  He is a Korean War veteran and always tells me a story and reflects on things that he is otherwise reluctant to share.  We then go to the ceremony to honor the veterans and it is quite emotional for both of us.  Seeing these men and women that fought so bravely for our rights and freedoms always chokes me up, especially the older ones that struggle to rise, salute and get around in general.  I was relieved that I was able to come home with good news following my appointments and not be kept there for additional tests and miss this day which is so important to us.  Much honor, respect and thanks to our military men, women and K-9s, past and present.

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