So, after all those cautionary restrictions were in place, I was discharge home with my HEPA filter and my fear.
At home, Sam and I tried to get into a routine. I continued to feel worse from the chemo, and the mouth sores got worse. I recall having more difficulty eating and the mouth care getting more painful to do, although with the sores it was even more important to take care of it. The mouth sores become easily infected, so the every few hours ritual of cleaning and rinsing with the antibiotic mouthwash was critical. Bugs, remember?
And then another problem came up, one that would worsen as time went on. Remember I said that the fast growing cells all along the digestive tract are affected by chemo? It was true of the beginning (the mouth), and then it became a problem on the other end. This one is trickier to talk about, so I’m going to have to be fairly blunt. (For those of you who got emails from me about this time, you’ll note I left this issue out, or was much more oblique about it). It became painful to go to the bathroom. Apparently sores and sore areas started forming there as well. Bathroom activities became a real painful chore. There was some medication that did help some, a xylocaine-based ointment, but not nearly enough.
Along with this were the changes from my normal life, even the simplest things. I still had the pick line going into my chest which required specialized cleaning that Sam would do. (Fortunately for me, Sam was working as an ICU nurse, so he had lots of experience at this.) Also, the line had to be covered up with plastic and tape to take a shower.
Beyond all this, I obviously wasn’t working. Sam, in conjunction with my sister from New Orleans, worked with my manager Emily to get me on a disability status. Fortunately I had good short-term disability status, so not only was I able to get on it fairly quickly and easily, the finances were taken care of. Before I started feeling poorly, I had worked on one work assignment, a risk management newsletter. I did as much as I could but sent the outline I had on to the editor (Peggy Cwik, who I’ve introduced to you previously as one of the “people for whom I run”). It was published, and it looked good. But I wasn’t working by the time I got home, so I mostly felt poorly and watched TV. I remember watching a lot of cooking shows. If you can’t eat, watching food is a good substitute. Besides, it was either that or judge shows. I became a devotee of “Law & Order” at that time as well.
The toll of all this, plus the constant fear of infection, took its toll on both Sam and myself. Sam, bless his heart, had it really tough during this time, and my anxiety and grief over the significant changes in my life didn’t help. Sam had to take care of all the household duties, watch me carefully, and keep his full time job with a frequently unsupportive boss. It was a lot to ask, but he did it all. We both watched my temperature, taking it frequently, almost obsessively. He did encourage me to start anti-depressants and to start on medication to help me rest. I hadn’t taken pills much in my whole life. Now, with the multiple pills for ATRA, pain medication, and psych meds, I was a walking pharmacy. I wish I could say it all helped. But there was a lot going on.
One thing that did help was my brother Bruce, who came out from Texas to visit and to help out. Bruce is a great guy, and was able to do what he could to clean and cook. But just him taking the time and effort to get out there was invaluable for me.
Unfortunately, both Bruce’s visit and my time at home came to an end. Sure enough, as expected, after a few days at home, I finally spiked a fever. About the time this occurred, he was called home for another emergency. But he was there at an important transitional time for me. I appreciated it.
But, with the increased fever, I went back to Stanford Hematology unit to start antibiotics.
If you didn’t know my situation before I was diagnosed, you may wonder why my family have not been a part of the history of the diagnosis and treatment thus far. So you’ll know, at the time of my diagnosis I was living in the SF Bay Area, and my sister was in Kenner outside of New Orleans and my brothers were living in Central Texas, where we all grew up. My parents had both passed away a few years earlier.
But that doesn’t mean that my brothers and sisters weren’t a big part of my support during the initial diagnosis. Sam had been in contact with them all, and they had agreed that immediate trips out there weren’t necessary at that time, and that future trips during the recovery would be better. But I do recall talking quite frequently during that first admission over the holidays in 2001. And, they all came out at different times in the first few weeks of 2002 after I went home, as you’ll see.
While we’re not physically together as much due to the distance, I love my siblings, and really appreciated their support. Here’s a great photo of us all, from about 1966….
…And all of us in a similar photo taken about 35 years later (I’m thinking 1999-2000).
I was the baby. The oldest Bruce, on the far right, was the first to come out to see me in SF, and he came on my first trip home. Unfortunately he had to go back home about the time I had to be readmitted, but it was great to see him.
My sister Karen is the next oldest, and she was very active helping Sam with as many administrative things from the first days — insurance, disability, etc. That’s her. Always very helpful. She came out a couple of times, if I recall correctly, once when I was on my second hospitalization and once after I came home (or perhaps she was there at the end of the admission). I describe Karen as a cross between Katie Couric, Mother Theresa, and a drill sergeant (being six years younger than her she pretty much raised me, so it wasn’t until not long ago she stopped doing that motherly, helpful, slightly bossy thing).
The one next in age to me is my brother Terry. He came out during some of the worst times of the second hospitalization, when I really wasn’t doing well. It was terrific to see him and see how he supported me — he’s a very busy school superintendent but still found a way to come out. While I honored to be his “best man” at his wedding, I always will think of Terry as one of the best men I know.
I have to give thanks as well to the support of my extended family as well — my uncles, aunts, cousins, nephews, niece, etc. I am absolutely certain that if I had been ill and recuperating in Texas I wouldn’t have been able to chase them out of my hospital room, and they would have done anything for me. I know Karen, Terry and Bruce kept them all updated, and I got several cards and letters from them. They’re great.
Here’s a great photo of some of the extended family from Bruce’s surprise birthday party in January 2004. Scary, I know, but they’re family.