History #20 – Early February 2002, discharged to home: End to pineapple legs and thigh-high stockings.March 29, 2007 at 6:44 am | Posted in chemo side effects, chemotherapy, family, Karen Oxner, My initial treatment -- induction, Sam Cantin, Terry Timmons, TNT | Leave a comment
I began my post-discharge life at home in this way: Along with the aforementioned pineapple fluid filled legs and ironic weight gain, I was given diuretics and other treatments to reduce the fluid. I was encouraged to keep my legs on pillows, preferably above the level of my heart to minimize any further swelling. They also gave me something that I had encountered in my clinical nursing career working with the elderly, to wear. When I went to bed, I was to put on a pair of TED hose. These stockings went up my thighs, and compressed the flesh on my legs in an attempt to remove fluid from them.
Any of you reading this who have to wear them, I apologize in advance, but having worked with elderly patients with TED hose I must admit made me feel even more like an invalid. Each night I’d go through a routine of pulling, stretching, and tugging these hose over my legs. It was about a fifteen-minute process. I could recall many times when working with patients doing the same for them while putting my own on. While in the morning I could see a bit of a decrease in size, the concept of it all was a bit humiliating and demoralizing.
Otherwise, much was similar to the previous experience at home in early January before the most recent hospitalization, which I talked about in earlier posts. I was still taking chemotherapy, and by white blood count was still down. This meant the threat of infection was still there, so the high temperature watch and constant threat of needing to return to the hospital for more IV antibiotics was still there. All of the food (no cheese, yogurt, fresh fruit and veggies) and household restrictions (no houseplant dirt and kitty litter removal – sorry Sam) were still in effect. And I still had to wear the HEPA filter mask when outside. And the bathroom problems previously discussed were still occurring.
One positive thing about this time period was my sister Karen had come out for an extended stay to help out with me, and help Sam with the household duties. She had come a few days before discharge almost immediately after my brother Terry had left (I think they might have overlapped; some of that time was when I was struggling with amphoterrible episodes, so I don’t remember exactly.) Karen has been my surrogate mom, even when my mom was still around, and we’ve turned our relationship into a comfortable adult sibling one, although with occasional maternal overtones. So having her there helping out and being support was very valuable.
One thing that she encouraged was for me to get more exercise. I had been in a hospital bed for most of the month of January, with occasional sojourns into the hallways of Stanford Hospital accompanied by an IV pole or two and my trusty HEPA filter. And with the onset of pineapple sized legs, walking was even less of a priority. But at home, Karen encouraged me to start walking with the larger legs.
I’ve come to be amazed by patients who during or immediately after become a participant for Team in Training and start an endurance program. I am just now understanding how difficult this is for a healthy person. How do these people immediately hop out of bed and start doing this stuff? I certainly couldn’t. I came to find out that, even with encouragement from Karen, I could barely waddle my pineapple legs a couple of blocks. And to think that five years and a month later, last Saturday March 17th, I ran 10 miles. Life is interesting.
So, about this first week of February (I remember the time because the Super Bowl was happening about then), several events ended and began. My sister went back to her home in New Orleans about this time. I know it was hard on her to leave, and it was hard on me. And Sam.
And, FINALLY, the pineapple legs left. It was always going to be a relatively temporary condition, they told me, because it was a side effect of the steroids. I had started on them when taking amphoterrible, but after that treatment had run its course and had successful while in the hospital, it was discontinued. However, one can’t immediately stop taking steroids, so I had to continue taking it but taper off of it. After all the steroids had been discontinued, it was a waiting game for the fluid retention to end. They said, keep taking the diuretics, and in a few days it will kick in. “Kick in” meant, basically, the body releasing the retained fluids. They would be released in the normal manner, through the kidneys. So, I was told to expect to go to the bathroom when it kicked in.
After a week of continued pineapple legs after the steroids were stopped, finally one night it hit. I went to the bathroom, did the proverbial #1, and continued. And continued. And continued. It seemed like several minutes. When I woke up the next morning, the legs were mostly normal. It started to become easier to walk. No more hose. I lost weight, but I never really got that Nicole Richie cancer thinness.
That ended the January hospitalization and its effects. Now the continued outpatient chemo treatment and cycles of illness and recuperation in February would begin.
Let me introduce you to someone else in whose honor I will run.
My brother Terry is a school superintendent in Abbott, Texas, a small town south of Dallas. We grew up about 5 miles from Abbott in another small town. In a small town you share the good times (you should see a wedding in a community where most are of Czech descent — seems like the entire town is invited and comes out for a big bash) and the not so good times. Lots of terrific people there, who care a lot.
Terry told me about someone named Justin Waters.
I didn’t know him, but Terry did. Here’s what Terry had to say about him:
He was around 8-9 when he was first diagnosed with leukemia. His family goes to our church and I personally taught Justin in my Confirmation class. …
Justin did [go into remission] and then went another 4 plus years before it becoming active again. He and his parents were told that a bone marrow transplant was his only hope for survival. So he went on the transplant registry.
Luckily, in April of 2005, a match was foungd in Germany of all places. So he was given the marrow and improved immediately. He spent a lot of time at home, but in April 2006, he left the house to go to his Senior prom. Later in May, he walked across the stage to receive his high school diploma from West High School.
Unfortunately, his lungs were attacked with a form of fungus. So, late last year, 2006, he went to Houston to have a lung transplant since the fungus had about destroyed the lungs.
A donor was found and he was doing great again. They even talked of him coming home for a day or two to celebrate Christmas with his family. That never happened though because he started having seizures and a brain scan revealed that he had lesions on the brain — caused by this same fungus.
Finally, Justin succumbed to all the diseases on January 19th at the age of 19.
I will be deeply honored to run in Justin’s honor.
Much of this second hospitalization, in mid-January 2002, is a blur to me, for reasons that will become more apparent later. But there are several events that I do recall. Oh boy, do I recall them.
I do recall that during those first few days I was fighting infections, getting IV antibiotics, still having trouble with both ends of my digestive tract, etc. I don’t recall the first few days in the hospital being that different than being at home, physically.
Another thing I recall was Rene McGillicuddy coming in. Rene is the current running buddy of mine, but at that time neither of us were involved in those activities. Rene is also a fellow consultant for AIG with me, not part of the Healthcare group, but she and I had developed an acquaintance from work events, finding out we were both from middle-of-nowhere Texas.
She came to visit me during the beginning of that admission during one of her hospital outpatient visits for her breast cancer treatment. She was in remission at the time and was on one of her follow up appointments. What struck me at that time and what I remember was this was one of the first instances of a survivor of one of these life-threatening major illnesses that I had met, and spent time with. Even though it was a different type of cancer, hearing her going on with her life in spite of what she had gone through was very, very inspiring for me. Funny, Rene still gently pushes me to expand the way I view myself and what I can do and endure, by encouraging me to run.
During this time I also recall my brother Terry being there, and staying with me overnight in the hospital several times. Terry was at the time a very busy superintendent of schools in a small town in Central Texas (Abbott, Texas), and school had started up for the year. But he came out for me. I still am touched by this.
Terry was three years older than me, and growing up we had the same bedroom for several years. We fought and did the stuff brothers did, but I also remember him looking out for me, as a big brother does. Good to think he was still doing that all these years later.
I always felt bad that Terry never spent any time in the Bay Area and saw anything other than our condo and the hospital. And I was glad to be able to replace the Stanford baseball cap that he bought when he was at the hospital after he lost it at Six Flags. I’m really proud he was there.
After he left, I recall taking a turn for the worse.
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.