Up To Speed

by Sarah

I’ve had hip and back pain for a couple of months. Walking irritates my hip  with the occasional sharp pain thrown in and the stabbing pain in my back would shut down my breathing whenever I took more than a normal breath or tried to sit up.  I went to a doctor of physical therapy on June 26th and had a work up and X-rays. After returning home with a PT plan for my back and an MRI for my hip, I got a call from the doctor.  He informed me that the radiologist noticed a complex cyst in my femur. I knew it was bad. The fact that HE called me, I sensed fear in his voice and then of course that he wanted a full body nuclear bone scan done the next day. Duh. I was lucky to hang with Rick that night and he was the perfect distraction.

I went in for the radioactive tracer in the morning and they took a couple preliminary scans. I sensed a subtle shift in how the techs were treating me. They could see the initial shadows of the tracer starting to show black against my white bones.

The doctor promised he’d call me as soon as he got the radiology report since it was Friday and he said he didn’t want me to sit with this over the weekend. Plus, he’d be on vacation the next week. He sent me a text about 5:30 asking if now was a good time to talk. When I answered, he said “Sarah, this isn’t good.”  He went on to explain the cancer metastases he was seeing…lots of them. Bone mets, as they’re affectionately called. I ended up going to his office to review the scans and the report. He was calm but visibly shook.

I went home, unsure what to do next. I was able to connect with a few friends on the phone and repeated what I knew. I packed a bag and went to my folks’ house. They know something’s up but have no idea what’s coming. It was good to spend time with them and a relief to me that they were unaware. I spent several hours with Mike and Nancy Saturday night and went over what I knew with them. Despite the weighty topic we had some laughs. It was good for me.

Sunday I ended up connecting with some of my RAAM team, one a radiation physicist and another a radiation oncologist. We had dinner and enlightening conversation at Teresa’s. The speculation was that this was a recurrence of my original cancer, ten years later. Again, despite me and my cancer stuff looming, we had laughs and a great evening.

The radiation oncologist got me into his office the next day and I spent three hours there, along with Jana, going over scans, information and had a radiation planning session to address my pain points and largest lesions. Oh, and the tattoos. Not quite what I bargained for but hey, not the first time someone got an unexpected tattoo that they weren’t thrilled with around their bikini parts.

I left feeling better than when I went in, even though the scan performed in his office showed even more bones with cancer. Ribs, vertebrae, scapula, femur, hip, skull….easier to find one without cancer.  Incurable.  I guess terminal is now passé.  Even so, the speculation was that there are treatments that this will respond to for “a long journey”.  Long is a relative term.

The cancer in the top of my femur is most pressing because it’s prone to snap. The cancer has eaten its way from the inside out and breached part of the outer bone. Next stop, orthopedic surgeon. He explained that I need a rod the length of my femur to reinforce it. The sooner, the better. He gave me crutches to use, especially for longer distances but I’ll need them after the surgery, anyway. He agreed that I could still ride my bike but crashing would be disastrous. Fingers crossed no one pushes me down. I tried to take them for a test drive when leaving the office. A 70-ish lady opened the door for me and I proceeded to lift the crutches under my armpits and walk out. Cindy accompanied me to the appointment. She’s a good friend but I’m suspect that the movie star looks of the doctor may have played a part.  If not, it should’ve.

We went back to the car, shoved the crutches in the back with the skeleton that was already there.  That’s another story.

Due to the wind and weird sky, we opted to just stay at my place instead of the bike ride to The Tap. The thought of lots of wobbly riders on the trail with me didn’t sound quite as appealing now. Instead, a group of 10 or so gathered at my place and we had some food and drink and told some tales. It was a fun time, an honest time. When you have nothing to lose, lots of shit is funny. I’ll attribute it to the cancerous spot in my skull.  I’m going to milk that.  I may have slightly horrified a few folks but I think most of them are used to my comments although this may take it to a level that not all of them have seen previously.

Did I mention that I have kick ass friends?

After everyone scattered and left me alone with my thoughts, I dug into MD Anderson. I put in a request for an appointment at midnight and continued researching their operation.

Wednesday morning brought a PET scan.  This should light up all of the cancer from my neck down to the middle of my thigh.  The results reminded me of a Light Bright puking all over its black screen.  Lots of cancer in even more spots, including my lungs and some lymph nodes.  Kick the grim up a notch.  We discussed the results amongst other things.  The doctor had a college student following him whose mother is also in the midst of a cancer recurrence who happens to be a friend of mine.

We got the interventional radiologist, biopsy dude, to agree to do the CT guided biopsy the next morning.  Out of all the spots he had his pick of, he chose my butt….right where I sit.  I’m going to take that as a compliment.  So, 7:30 Thursday, I’ll be at the hospital getting prepared to be stuck in the tooshie.

What’s next, short term….brain MRI, appointment at Mayo with a medical oncologist and orthopedic oncologist, decide if MD Anderson is a good option, some bike rides, some friends, maybe a fire and taking a stab at getting my shit together to start knocking some things off my to-do list.

My thoughts?  I have great friends.  I’m fortunate.  There’s a lot of fun to be had.  Telling my parents is going to be hard.  Someone asked me today if I’m scared.  I don’t know if I can identify any of my feelings that way.  I’m in survival mode and so busy trying to arrange appointments, get to appointments, keep up at work, figure out what needs to be next, eat, sleep, find appropriate underwear to wear to all of these appointments and do my due diligence for treatments and facilities that I haven’t had the luxury of feeling scared.  I’m sure it’s in there somewhere but it doesn’t feel palpable.  Maybe Fear will visit me later.  Someone else asked if I was angry.  I’m not right now.  He asked why.  I know it can’t help me right now.  There are things to do and Anger is not a tool I can use…it doesn’t serve me.  Maybe it will visit me later.  It will probably get drunk and show up with Fear in the middle of the night to pay me a visit.