A Miserable Week

Well it had to hit sometime. Over the course of radiation I was getting increasingly fatigued and seeing people was getting harder and harder. Mainly because I just didn't want to move from bed. I didn't feel like talking. I have become increasingly aware over the last week that the blog has been painting a rather rosy picture my life. And you all know that I love people -- normally I draw energy from friends and family but I found myself wanting to avoid people and hibernate with David. I couldn't say no to people who were it town briefly -- but luckily people were willing to come to me and David was very good at minimizing or even discouraging visitors. I have a really hard time doing that.

So I am making a effort to show you the past week. The first three photos were taken on my last day of radiation (October 3). It was so hard to simply make it to the hospital that day. David took a photo of me coming out the last radiation -- yes, I did smile a little. But, actually, I get nauseaus recalling that day at all.

The Massachusetts weekend was the last hurrah. On Monday we made it back to NYC just in time for radiation. That day, after radiation, I hit the bed and didn't wake up until dinner. My cousin Nathaniel came over for a vegan dinner (Candle 79 just downstairs -- excellent restaurant with surprisingly tasty vegan food -- although desserts....I don't know if they work vegan...). Going down to dinner did me in -- but I was still a bit confused about my own energy level. On Tuesday it was just as hard getting to the hospital. In fact, for the first ever I HAD to take a cab (the hospital is only ten blocks from Suzy and Larry's). While there I commented to David that I was not sure that I could take one more day of this. I had reached my mental limit. This painless, five minute routine in the morning had started to push associational buttons. I remember towards the end of my A/C chemotherapy treatment for breast cancer I would start throwing up just entering the chemo lab. It had nothing to do with the chemo (which sometimes made me throw up too) -- but everything to do with psychological triggers. Tuesday we taxied home and I couldn't get out of bed again -- but towards evening I pulled it together and we went to a very special dinner that my cousin Betsy Brock had arranged and I was looking forward to (separate photo later). But god, was I feeling it.

That last day -- was miserable. It wasn't even very celebratory. I felt sick for those associational reasons. The radiation was so fast every day that one didn't really get to know the staff -- it was a like a radiation factory (unlike chemo where one really gets to the know the nurses). They gave me my mask to take home. That is an art project waiting to happen. The sweetest part about the day was David's gift to me. We had actually picked it out together before radiation -- a glass ring by a Japanese artist (purchased at MOMA) called coral. But post-radiation it seemed to have distinctly brain-like qualities. I didn't think David had remembered about the last day of radiation gift! And suddenly, there it was on a chair -- I just noticed before I left the room! I love that memento.

So we taxied home and I crawled into bed again. We had lunch arrangments with an Argentinian friend but I couldn't do it. David went alone. Cecilia did come back to say hi to me and it was wonderful to see her -- but that was the moment when I realized ALL socializing was OUT til my body recovers. And that it still where I am now. David and I drove back to DC on Thursday, October 4. But I couldn't get out of bed all day so we didn't leave til seven, thus getting in at midnight. It was a strange drive -- towards the end I couldn't stay awake -- but I was SO uncomfortable. At night my neck starts to ache, my head feels funny, I get restless from steroids, etc. But here's an interesting fact. It was so good to get out of New York. Poor New York -- my associations have to do with the whole city. The minute I got home I started relaxing. Both David and I slept better than we had in weeks. I didn't have a headache when I woke up. However, I was still just as fatigued. Luckily, David had meetings at the State Department that day and I could just sleep. Towards evening, I accompanied David to Annapolis and we had dinner there. I was trying to spend some quality time with David before he left.

Saturday was a special day that I had to rally for. My grandfather's 95th birthday party and family flew in from everywhere. Even my brother-in-law Joachim managed to be there from Sweden. So I slept all morning, and David and I had some time with Joachim to chat. Then the party. It was lovely but after a few hours I thought I was going to keel over. David and I left at about 9 PM. And we didn't go home. We went to Virginia, where David parks his car at his friend Will's cabin when he is out the country. We arrived about 11:30 and went to bed in the quiet woods. In the morning I read in a hammock while David washed his car and prepared it for storage again (quite a routine). Then Will drove us back to DC in time for David to pack, have dinner and go to the airport. I am not allowed to drive for a couple of months so my mother was sweet and drove us to the airport and left me alone to go with David into the airport and helped get him checked in.

David is gone. I miss him terribly. But he was here during the most critical time for support and that was what counted. Now I just need to let my body sleep and recover. That would be a bit boring to watch real-time. The last two photos have been my days lately. If you don't notice the jowels and double chin YOU'RE BLIND. I am eating every two or three hour (toast mainly) because otherwise the steroids upset my stomach.

I haven't taken any visitors this week. I am learning. I am so happy to stare at the ceiling, read, check e-mail from a prone position in bed, and contribute to work as I have energy. My colleagues in Amman are still engaging my mind and it is nice because I can write and not talk for the moment.

So here's how I feel -- fatigued. No energy. I am not nauseaus. I don't feel depressed. But my body is screaming out for rest. I am living on the third floor of my parents' house and my exercise is going downstairs for meals. It is easier going down than coming up! I want my body to use all its energy sloughing off tumor cells from my brain and getting unaddicted to steroids. That is the hard but crucial part right now. The minute one introduces synthentic steroids into the body, the body stops making its own steroids. The process of weaning oneself from steroid takes time -- a step down every four days. I am currently down to four miligram a day (novel when you think I was taking 24 mg a day). However I sleep badly and feel really funny at night because my body is accustomed to a steroid pill at night. Little by little. Within a week I hope to be off them. But it will continue to be a rough week -- actually weeks. They say that you start to recover energy within two weeks -- but then slowly. It takes up to two months to lose the jowels and water weight.

Tomorrow my mother and I go to NYC again. I could just throw up thinking about it. But tomorrow at 3 I have a CT scan to find out what has been happening with the rest of my body while we were dealing the brain. I then I have a Monday afternoon apppointment with my oncologist for the results and some kind of plan until we can re-run an MRI and find out what the radiation did. My next MRI is scheduled for November 19 and then I will get the results on November 20 -- election day in Jordan!

I hope this helps people understand why I have been so silent. I simply couldn't muster the energy. Every day I would find myself at the end the day and unmotivated to recall those last miserable days of radiation. But I have done it now. I will post few photos tomorrow or the next day regarding some the last pushes at socializing. But that is over for a while. I am sure everyone understands. My body needs its quiet time and I am trying to respect that! I will be back in DC as of Wednesday next week, but don't expect to be at all social till the week after that at the earliest.