Surgery number three went much better than  I anticipated. I can walk without a brace or other assistance and my left foot and leg are as strong as they were before surgery.

Last Friday, my surgeon who is fond of food related metaphors, removed an egg size portion of my sacrum and my S1 nerve root ( a noodle with tumor sticking to it like spaghetti sauce) along with the gum ball size remaining tumor. He said it was a very aggressive surgery and with the sacrum out of the way, he was finally able to remove all the visible tumor. The surgical team also successfully placed two foley catheters with saline filled balloons between my sacrum and my bowel. The balloons will stay in place until I’ve completed radiation treatment in a couple of weeks.  Time in the OR was seven hours.

I woke up in recovery that evening  with a sense of elation at once again coming back from the unknown, and this time, no nausea. I slept most of the night and Saturday morning I was able to eat some scrambled eggs and oatmeal. It was more tasteless than I remembered from my previous visits, but I was eating regular food!   The physical therapist got me to stand with a walker and my foot wasn’t floppy but my blood pressure dropped. After a couple minutes standing, it dropped further and everything started to go dark.  Back into bed with a bolus of fluids on the IV pole.  That evening, I walked on my own with a friend. We were surprised and delighted that my left foot and ankle were as strong and functional as ever.  It took me a day or two to believe that the surgeon had really removed the nerve root.

Late Saturday night, the nurse told me that my blood levels were low and the doctors recommended a transfusion. At first, I resisted. I was so happy I could walk and I didn’t feel bad. I asked if they could check my blood levels again. I would agree to a transfusion only if it was still needed. The second blood test revealed that my levels had dropped lower, as the doctors predicted, so they ended up transfusing me with two units of blood to replace what I had lost during surgery and post surgical drainage.

Sunday, Monday and Tuesday I continued my most important activities in the hospital: walking, eating, visiting with friends and family and lots of napping.  I got stronger each day with only a couple of setbacks. I have learned a few things about life on this particular hospital floor after three extended visits. Each time I was more impressed with the nursing staff.  My first visit, I thought they seemed busy, pressured and unfriendly. During my second stay, I came to appreciate  the constraints they work under and how many communication snafus they tried to prevent or untangle.  Still, I felt hesitant to push the call button as often as I wanted. I tried to remember my questions and group them together and to fend for myself when I could.  This third stay, it seemed the nurses were uniformly great.  I was able to make connections with them and they acted as advocates on my behalf with the doctors. In a complex cases like mine, with multiple disciplines involved, it can sometimes be difficult to figure out who has the authority to do something as seemingly simple as a dressing change.  Early in my stay, one of the nurses started writing a list of my current questions and issues on the white board in the room and the other nurses continued this.   Someone also started to write when my next dose of pain medication would be available and what my options were for breakthrough pain. This helped me relax because I could plan ahead and didn’t have to rely on my memory, or the nursing schedule, or wait for pain itself to remind me.

I don’t think the first group of nurses was different from the last, ( some of them were the same people), I think over time I learned to communicate with them more effectively. I tend to error on the shy side of asserting myself, but these hospital stays have reinforced that when it comes to protecting your own health  you can’t rely on the system to do it for you even if is full of competent and caring people. It is best to question everything and even more effective if you, or someone close to you, can figure out a way to do this and still comply with the golden rule, especially difficult when you are helpless and/or in pain. It certainly helps to know about medical culture.  To most of us the hospital environment is a very foreign land with weird languages and mannerisms. Most of us could use a translator and cultural guide on our visits to the purgatory of hospital land.

When I was finally released to go home late Tuesday evening, I enjoyed gliding through the dark streets as a passenger on my way to my new home. I had been unpacking up to the last minute before surgery and now i was finally coming home to rest and recuperate. As it turns out the few days I have been home have been full of ups and downs. But the good times resting quietly, enjoying meals with friends and taking very slow walks have far out weighed the times of discomfort  and worry. The last two mornings I had to return to hospital and clinic land for pre- radiation scans. Cyberknife treatment may begin as soon as next Thursday. For now, I feel I’ve made a safe passage around the horn of Africa or some other perilous sea am anchored in a safe harbor until it is time to launch out to open water again.

I hope to write updates more frequently and welcome your questions and comments.