Newsweek reporter Jonathan Alter has documented his struggle with cancer: Linda snaggged the magazine from one of our practitioner’s offices (with permission). Alter writes about the emotional ups and downs, the uncertainty, the private despair, the physical fallout like fatigue and the public need to appear chipper and upbeat – all things that Linda and I are dealing with. Suffering from stage 4 non-Hodgkins’s lymphoma, Alter is now in remission – a minor miracle which points out how no one’s experience with cancer is ‘typical.’
Mortality rates – usually expressed as a median like ‘4 years’ – half of patients live longer, half don’t – are hard to parse. If you make it past the median, you might make it for decades. If you don’t, you don’t. Not easy to plan a life around that.
Like Alter, I have a brilliant and dedicated oncology team: but it’s still hard to filter all that they tell me about glioma, not to mention the things I learn elsewhere. Cancer is a very complex disease, and affects almost every patient differently. Deciding on treatment is not easy: should you try therapies that have the highest percentage of positive affects for current and past patients? Or try new, experimental therapies that show promise? Alter also thoughtfully talks with Elizabeth Edwards – the whole package was an interesting read for Linda and I…
I’m not sure why I haven’t documented my tribulations this week: this has probably been the toughest week for mobility issues since I became aware of my brain tumor. My left side is particularly shut down, and the right is weak. Balance, never a strong point with me, is particularly bad.
Monday, I made it into work, but fell 3 times, twice at Adobe (once a colleague saw me and helped me up, much to my embarrassment) and once while hobbling to the Dash bus stop near Adobe’s Almaden Tower. I went down face first, skinned my knees, and bruised my hip – but otherwise not too bad. The Dash driver stopped, and waited for me to limp to his bus: a welcome kindness – I made the 4:25 CalTrain thanks to that.
Tuesday (and the rest of the week) I worked from home, and thanks to Adobe’s Connect technology and a good conference phone, I both got through my meetings and had blocks of interuption-free time to get work done. That was the good part.
The bad part came later in the evening as I was crossing the family room. Suddenly I completely lost balance on the left, and fell, backwards, hard, into a bookshelf and then onto the hardwood floor. The bad part about that has been a lingering, very sore lower back that complains every time I move (and standing up, dressing et. al. were already hard without this new misery).
Linda and I were both concerned about the rapidly disappearing mobility: my oncology team had previously said it wasn’t the tumor, but rather fallout from steroid therapy. High steroids (16 mg/day) prevented the edema, or brain swelling that shut down the left side: but they also cause weakness, with extended use, that affects the right side, so I was being ramped down weekly on the steroids, in the hopes the edema had subsided these past 4 months. As I got down to 4, then 2 mg of steroids, the edema returned, in spades. Coupled with the big muscle weakness on the right, I am a mobility mess.
In any case, Drs. Liu and Butkowski were concerned enough to ask me in to UCSF Friday for an unscheduled MRI and consult. The new MRI showed, again, a quiescent tumor: good news. But it also showed a bright, large splash of edema – swelling caused by detritus from last December’s radiation therapy. So we’ve ramped steroids back up – to little effect so far, and I’m not happy about the potential for other steroid side affects. Not a fun week, and I’m contemplating without great joy how to deal with the mobility issue… wheel chair next? Yuk…