As time moves closer to the end of chemo, we move closer to more scans. B and I experienced some massive anxiety junk waiting for the ultimate scan that told us that this was not metastatic disease. Our oncologist is very straight with us, which we appreciate. When she first met with us in mid August she asked if we wanted to hear all potential outcomes of the eventual PET scan. We asked her to sock it to us. As she was talking about the metastatic side of things she mentioned that we’d be looking at “quality of life issues rather than longevity”. It was basically in our face that this could be or could have progressed eventually into something we did not really want to have to deal with at this time in our lives.
My Winnie ther Pooh tendency was seriously challenged between that conversation , the PET scan and the results conversation. In fact right after the scan, I left the building and the skies opened up. The walkway had a long roof over it, but I could feel the mist from the down pour. At that time, I was so instantly carried to visualization that I saw in my mind’s eye the rain washing my body inside and out. I was walking with my face to the sky, probably smiling like I do when I’m oblivious to others, and a man came from behind and said something like “perfect timing” with a disgruntled Calvin (& Hobbs) look, as he ran to his car. Our different response to the rain was intriguing and made me smile. I held my arms out to my sides, palms to the sky and the rain as the man pulled out of his parking space and took off.
When I get blasts of the fact that cancer can be a life threatening disease, I feel a small charge, I acknowledge the fear. Life can be life threatening, so this is not a new thought, just an in your face kind of thing, but anxiety is NOT something I think about much in my personal life, or live with often, thankfully. It’s an awful thing that takes over one’s every thought, cell, dream, heartbeat…it is a full body experience in the negative zone.
The PET scan was on a Monday afternoon, late August. B and I both thought we heard the secretary tell us the appointment to review the results was Friday at 9. That’s basically 4 days to wait for results. Have you ever waited for significant results? I remember asking someone who was once waiting for HIV test results if she even considered that she might not be HIV positive. She said that she never considered it once the blood was drawn. She had herself in the grave until the results told her that her death would not be from HIV/AIDS…at least not this time.
Here’s my journal entry 2 days post PET scan:
“UUUUUUUUUUUUUUUUUUGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHH!
I received a call at 9:50 this morning from the cancer center telling me that I missed a 9:00 appointment with the oncologist. CRRRAAAPPPPP. I swore that the secretary said Friday. I immediately called her to ask for a reschedule and she said there were no other times this week, and that the doc was off Thursday… but she’d try to get me in Friday AFTERNOON. I called B and the sound coming from his end was eerily similar to the one I made when I got the original call. Sort of like the sound you’d make if you were climbing a mountain and slid back down to the bottom one step from the top. GEEEZ. I feel so frustrated because we just want to know and get on the trail, so close yet so far. Now we must wait for a call with a different appointment.”
“Acknowledging the negative energy from stuff like this and moving on is a delicate art. There is lingering disappointment, a heaviness in my heart. At the same time, it is what it is, just like this cancer. Moving on to other things will bring more fluid energy into my mind, heart and body, but boy, I could hunch over that misery and roast myself in self deprecation and regret like a marshmallow over a campfire. I don’t have room for that right now.”
The new appointment was on Friday at 3:45 (couldn’t they make it any later??). I went to work and planned to meet B at the Center. I was working to get the necessary tasks of my job farmed out, I was waiting for the appointment, people were asking how we were doing. I received a call from a loving colleague and it just sent me over the edge. I started crying, shut my door, called my boss and between sobs told her that I was going home. I took out my pastels and could not even find the right colors, but blasted out the energy as my tears dripped on the paper. Good thing I was using oil pastels.
In the midst of the drawing, a call came to my cell phone. It was B. He caught on pretty quick that I was melted down. (wicked smart fella he is) It was just what I needed to calm, and ultimately I finished expressing, and left. When I got home, I sat on the deck in the sun until B came home and we left for the appointment.
Waiting for pathology reports ROTS.
The short story as you probaly know is that the PET was negative. YYYYYYYYYAAAAAAAAHHHHHHHHOOOOOOOOOOOOOOO!
If you want to read the longer story, here it is.
The nurse came out to get us, and was either struck by our incredible charisma and beauty, intimidated by B’s long hair, having a hot flash or SOMETHING. (Well, we probably did look like we had those slinky eyes or something after all the anxiety junk…) She said that someone went over my labs with us Wed (wrong) and that we probably didn’t need this appointment (WRONG). I said something like “We’re meeting with Dr. L to talk about PET results.” and she looked at me like I was speaking MARTIAN or something. This was very unusual in our experience thus far at the “center of excellence”. (Truly it is an amazing place.)
SO, nurse X met with us and assumed out loud that we were post surgery. (WRONG) We corrected that, and they she reviewed meds, took my blood pressure (150/70…WOW, for someone who is usually dead under the cuff …102/62 is a norm for me…) and other vitals, and just randomly asked questions. I got her updated about the port installation and then she asked if I knew how that was going to work. Bob and I kept glancing at each other like OK, this is either a result of her putting her panties on backwards or she’s nervous about the information in the chart. I full heartedly believed it was her bad hair day. I think she felt good that she could educate us about the use of the port. She left and we shook our heads and made sounds like Buggs Bunny did after getting hit in the noggin.
Dr. L was a welcome smile as she came through the door. “I’m glad you insisted on this appointment. I knew my patient cancelled and had no idea you were here.” (another jolt on the weirdness meter) She said a few other things and I don’t know about B, but I went into Charlie Brown teacher mode “Wa waaaaa, wa wa wa waaaaaaaaa until I heard…PET scan was NEGATIVE.” She kept talking but B and I went into slow motion looking at each other, high fiving, and I immediately felt my blood pressure drop back to the dead zone. You know I use that dead term jokingly, right? (When I was 9 months pregnant and had a 110/60 blood pressure B shook his head and asked if I was dead.) Anyway, meeting again with Dr. L confirmed our belief that she will be a cool and intelligent partner on the trail.
It’s so interesting how eerily easy it is to feel grateful about the news that this cancer is local and systemic instead of metastatic. As soon as we got in the car we called the kids and we all celebrated in gratitude and relief.
So here we are. Mid cycle 3, one more infusion next week, and we just received dates and times for a PET scan ordered by our oncologist and an MRI ordered by our surgeon. I wonder what it will be like waiting. They made the appointment to review PET results the DAY AFTER the scan. I hope we remember to go.
Back up on the trail this morning. The horse and my family in sinc. My boots are wearing well. I spent most of my time during the infusion knitting socks and visiting with B, A and our sweet friend S. When I knit, I can visit at the same time. When I draw I have a hard time doing anything else!
While the family slept, a friend and fellow kat lover went on a hot pursuit of some kitty furniture. This friend called a maker of such exquisite works to see what kind of deal she could finagle …in the mean time, others hearing of this mission offered to help raise funds to obtain the goods. The short story is that the craftsman created a tree and scratching post for the katz and donated it. It was picked up from the far off land by yet another, (who actually is the Cheshire Cat incarnate) and ultimately found the felines it was made for. Upon delivery, Guiseppi, Sofia and Chuang Tzu sniffed and scratched and perched and played happily ever after, and it brought deeeelight to the humans.
One way I’ve been working to avoid whiplash is by being more awake. I like to think that my eyes are open most of the time. (Thankfully I’ve inherited Pop’s sleeping gene, so I must confess that my eyes are CLOSED some of the time. As I digress, I just have to say that I’m grateful that, to date, I have NOT inherited his peeing gene – hey, with 4 brothers, I must have some crude “Y” need to talk about bodily functions once in a while…those who know me really well might say it’s more often than that…)