I realize it has been a while since my last update. Things have been very busy with getting my whole brain radiation going. I’ve spent so much time at Sloan-Kettering… yesterday I was there for 7 hours. By the time I get home I am too exhausted to write. But I do want to let you know where we are this week.
The first thing I want to comment on is the death of my dear friend Ann Gregory. She died the day before Thanksgiving. Her obituary appears here. Some of you came to know Ann through Twitter or through my stories about her in person or through her comments here on the blog. If you did get to know her and chat with her on Twitter over the past few years, you were lucky.
Ann was the strongest person I know and had numerous diagnoses of cancer throughout her life including leukemia and squamous cell carcinoma. She was quite stoic and, like me, was always okay as long as there was a plan for what to do. We spent hours texting each other (often those hours could be in a single day, depending on which one of us was sick or well that day or what phase of treatment we were in), always supported each other, and she was always a valuable source of information for me. I have missed her so much in the week since she has died. We did not want to leave each other. Four days before she died she texted me to say her goodbye. I will never delete those text messages and I am so sad that I have to do all that I have to do without her. My heartfelt condolences go out to all of her family, especially her husband, Chris, and her legions of friends. Her blog appears here. I just can’t do her life and personality justice here right now, but there is a gaping hole in my life now, and Ann is the precise shape of that hole.
Last Friday I did my mask-fitting and simulation. The mask-fitting takes about half an hour and is pretty unpleasant. The mask is molded to be skin tight on your face, to the point of leaving indentations when removed. It is rigid plastic, not flexible mesh. There are no eye holes or openings for your mouth… your chin is jammed up so tightly that you couldn’t open your mouth if you wanted to. I cannot speak at all when it’s on and attached. Obviously, this is vital to making sure the radiation is going exactly where you want it to go, and not where you don’t.
Even though the fitting and simulation take a while, each radiation session itself is quite short. After confirming the patient’s identity with name, birthdate, and a photo, you lay down on the table, they hand you a foam ring to hold on to across your chest so your arms are relaxed and easy to keep still, and a foam wedge is placed under your knees. Then the aforementioned mask is placed on and with some tugging and effort, attached firmly to the table you’re on. The photo gives an idea of what it’s like.
The technicians leave the room and the linear accelerator moves into place. The beam goes on and I can see even through my eyelids a very bright light with a bluish cast. It is only on for less than a minute and then it moves and does the same thing to the other side of my head. They say there is no smell to radiation but I always smell something. I have read that others do, too. I can’t describe exactly what the smell is. I’m working on figuring it out. I’m usually focusing on relaxing and not getting claustrophobic so I haven’t solved the mystery yet. It doesn’t quite smell like burning hair but maybe that is part of it. After the actual beams are done then the techs scurry back in right away and release the mask from its mooring. That’s it.
As I said in my last post, side effects don’t usually start for brain radiation until closer to the end of the 10 session series. So, next week I will see more of the fatigue and the start of hair loss. Memory loss takes a bit longer to occur. There are many things that might happen including headaches and nausea and confusion and blurry vision but those are not as common. I did not have any neurological symptoms before starting radiation so that is a good thing. I have some nausea and loss of appetite but that is primarily due to the liver situation. An inflamed liver causes pain, nausea, and so on.
I did my liver simulation for radiation yesterday. This is actually more complicated for the radiation oncologist to map out than the brain because part of my liver already received radiation when I had the radiation to my spine in January. For this reason, she needs to make sure it doesn’t get any additional radiation this time. None of the 13 or so tattoos (permanent ink dots placed by a needle under the skin to mark where the alignment should be for the laser beams for radiation) that I had from the spine and pelvic radiation in January were in the correct spots for the liver so I got about 6 more of those. The radiation oncologist will focus on the right lobe of the liver, but even that is tricky with the kidney and bowel in range.
They will work to map it this week and I will start liver radiation next Monday. That means this week (12/1-5) will be brain only, then one week (12/8-12) of both brain and liver, then one week (12/15-19) of liver only. Then I will wait a few days and begin chemotherapy again. These are hard days ahead. Side effects will be kicking in right as I go back to chemo. Christmas week will be the peak for all of this to hit the fan.
I’m continuing to get IV fluids 2-3 times a week and am also getting magnesium infusions because the most recent chemo continues to cause my magnesium level to stay far too low. Even though I am not getting chemo right now (in this case, chemo and radiation can’t be given together even though with some cancers they are) I am still having lingering effects from the last round of Cisplatin. The magnesium infusions add about 8 hours a week to time I need to be at MSK (Memorial Sloan-Kettering).
There really isn’t time to do anything else besides be there and rest at home. I’ll be there every weekday for the next few weeks. I’m managing okay and know it’s going to get far worse before it (hopefully) gets better.
I think this should give everyone a pretty good timeline of what I’ll be doing in the next few weeks so that if I can’t update much, you’ll still know. I know people have questions and I will do my best to answer them, it might just take me longer than usual.
Thanks for all of the support, as always.