A funny thing happened on the way to my nuclear medicine treatment. Well, not so much funny as unexpected. The tumor on my back grew – really fast. The doctors had changed my drug regimen in order to “excite” the cancer and then zap it with radioactive iodine. I was only one day away from the appointment to take the radioactive iodine, after a week of “dosimetrics” to determine how much stuff to take. But the cancer got a little too excited and grew like crazy. My legs got worse and I was in greater danger of becoming paralyzed. I woke up Sunday morning (June 17) about 4 am feeling really strange. I felt rationale, but was pretty sure that pure evil had entered my body. I quickly moved into a panic state and Carmela and I considered a trip to the emergency room, then considered just driving ourselves, then things eased up a bit. But after the next panic attack at 10 am, we got into the car and headed for the ER.
We went into the ER to ask for a tranquilizer, like Valium. The doctor admitted me for further tests. We stayed overnight, and after checking my history and consults with my growing team of doctors at UNC Hospitals, I was sent for an MRI. The results showed the tumor had grown considerably and surgery became the new plan. The nuclear medicine would have to wait. I was disappointed, but understood the risks of waiting. There were some new twists in this surgery. For one thing, the doctor planned to remove the tumor. The first surgery on my spine did not include removing the tumor because this was viewed as too risky and might damage my spinal cord. But UNC is a larger cancer center and has a team that would block the flow of blood to the tumor. That would make it easier to remove and less likely to grow back as fast. I was put under on Thursday and the vessels feeding blood to the tumor were blocked.
The surgery was on Friday. All went well with both procedures and I was discharged late Monday (June 25). I’m in the process of weaning myself off of the steroids again – hence the late night e-mail.
I feel very fortunate to be here at the UNC Cancer Center. The surgeon who removed the tumor has incredible talent, as do the many doctors I have met with. And they are all good people who seem to work endlessly. While in the intensive care waiting room, after my surgery, Carmela witnessed our surgeon also talking with the families of a young patient with a brain tumor and another young patient with a double aneurism. The nuclear medicine doctor sat with Carmela for a half hour on Thursday while the blood was blocked to the tumor. He met with us both several times to check on us over the weekend. He’s a researcher and we’re in new territory with my treatment. But its also obvious that he cares about his patients. I have a lot of trust in him and we’ll give the nuclear medicine another shot in September. Tranquilizers and steroids will have to be involved from the start.
Some more good news is that I suspect that my legs may be better than they have been the last 4 months. It is too early to know this for sure, and it is just a feeling that I have. But my legs do feel different. It will take a few weeks before my strength returns to my legs well enough to judge this better, but that is my sense right now – the sense of a guy under the influence of steroids writing out emails at 5 in the morning. But it makes sense because the tumor was never removed during the first operation in February, so perhaps I’ve been walking with pressure on the spinal cord all this time and now that pressure has been removed. No doctor has commented on this and I respect their reserve in not giving me false hopes. But it looks promising to me. The numbness in my legs and my lack of control have had a real impact on my ability to take photos and do anything in the studio. I can live with what happens, but have only now allowed myself to hope for greater mobility.
Something that continues to impress me is the goodness of the people I meet through all of this. The first couple of days, I was very touched by Fabian, my Hispanic room mate the first few days. He spoke little English and I speak no Spanish. But we communicated quite a bit, picked up the phone for each other. He was in his mid-20’s and had plenty of cancer in his body. He was in chemo-therapy and took it well. A very positive outlook and a nice guy. My next room mate was in his early 20’s and a burn victim. He too was taking it well. He was a true victim, just in the wrong place at the wrong time – a victim of fireworks accidently set off by someone he was hanging out with. He never had a word of blame for anyone and was focused on recovering. He offered me a lot of good information on the technical aspects of pain and recovery. But perhaps most impressive to me was the hospital staff – the nurses, aides, volunteers, custodians, dietary workers, and others. They are all so busy at UNC, not as well staffed as at the other hospitals I’ve been in so far this year, but just as caring. I feel so grateful to them. I am also so grateful to Carmela who spends her days helping me get through all this, and to each of you who are interested in this episode of my life and who I know truly care about me. That means a lot and I know I”m a lucky guy.