My recollection of the recuperation from leukemia, from first symptom to the finish of chemotherapy, is very vivid for most events. However, I’ve found I have had a block for a certain period of time where I didn’t remember anything that occurred. I remember the January near death experiences, and some events in March that I haven’t gotten to yet. But February has been a blank, particularly after the swollen leg problems ended.
I did some research and talked to a few people, and have recalled some of what happened.
Mostly, I think I was at home, and adjusting to the life of a cancer patient going through cycles of chemotherapy. A bit of update – by this time, according to emails from that time, I had been told that I was in remission, probably about the time of my discharge. You’d think that this would have been a celebratory event, but apparently it didn’t register that way. I did say in the emails that there was about a 5% chance of recurrence at that time. I think the reason why it didn’t register more happily was the way I was feeling, and the course of treatment I was to go through. I had finished initial treatment with ATRA for APLM, called induction, and now was going into the phase called consolidation. In this phase you have outpatient chemotherapy every two weeks for about three to four months. This chemo wasn’t to be as strong as induction, but still would entail all the side effects of the other chemo. I do recall that this chemo was a beautiful cobalt blue in color as it infused, as opposed to the vivid red that I had that first dose in the hospital before Christmas.
So, all the pain and discomfort from the side effects that come from chemo I still had to endure for a few months. The cycle, I came to find out, went like this – for a few days prior to my chemo infusion I would feel fine, as my body was allowed to relax. Then I would get infused, and for a couple more days, I would feel ok. But slowly my blood counts would bottom out to zero, and the side effects of that would increase (mouth sores, great fatigue, stomach and GI problems, etc.) And, I’d have to watch for fevers and signs of increasing infections that would require hospitalization again. That would last for a week, and then as it wore off I would start feeling better, until I felt almost fine. Then the next infusion would be scheduled. This was to be my life for the next few months.
And obviously I would not be able to work during this time. In fact, when at the worst of the fatigue, I wouldn’t feel like doing anything. So I was home, and not feeling good. Plus, going outside, even when I felt ok, involved wearing that HEPA filter. A disincentive.
I now am certain that I was tired most of the time, and pretty depressed. My life included fatigue, being away from my usual life, and watching TV. One would like to think one would work on their Great American Novel, or macramé, or something “meaningful” during this time. I was too tired to do much anything. I remember taking pain medications, anti-anxiety medications, anti-depressants, and sleeping pills. I also remember watching a lot of pre-felony Martha Stewart and Law & Order reruns. My good college friend Kimberly came to visit during that time, but she recalls her visit like this, and felt she wished she could have done something. There wasn’t anything to do about it.
There was one event that occurred during that time which contributed to a bleak February. More about the challenges in February 2002 continued in the next history post.
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.
Subtitled: The irony that is steroids in chemo to the overweight; or, Medication given for the side effect of medication given for the side effect of medication given for, etc.
The last posts here in the history section were about my discharge from the hospital after developing severe systemic infections and almost dying, and being started on the antibiotic “amphoterrible,” or amphoteracin, and enduring the side effects of that. While at discharge they had stopped giving me the amphoterrible, I still had one of the most difficult side effects – fluid-filled legs, the size of pineapples, and accompanying weight gain.
The fluid retention really wasn’t from the antibiotic, but from some of the medications to lessen the other side effects of the antibiotic. As I mentioned in an earlier post, one of the major side effects of amphoterrible is really violent shakes and chills. I had that almost immediately on my first dose. So, to lessen that effect, when giving amphoterrible a whole slew of medications is given with it – IV fluids, pain medications, and others. Others they give are steroids. I was started on low doses, but they still had side effects of its own, in this case the fluid retention.
So, I was taking medication (steroids) to counteract the side effect (violent shakes) of the medication (amphoterrible) to counteract the side effect (systemic infections) of the medication (ATRA and other chemotherapy) for my leukemia (APML). Getting all this?
Of course, since I now had a new side effect from the steroids, the fluid retention and pineapple sized legs, I had to have more treatment, including, you guessed it more medication. I was started on diuretics.
Ready? I was now on:
- medication (diuretics)
- given to counteract the side effect (fluid retention) of
- medication (steroids)
- given to counteract the side effect (violent shakes) of
- medication (amphoterrible)
- given to counteract the side effect (systemic infections) of
- medication (ATRA and other chemotherapy)
- given to treat my leukemia (APML).
Truly, a case of cause and effect gone berserk.
I must admit, having water retention and weight gain as a side effect of having a form of cancer was, for me, oddly disappointing. I’ve been heavy on and off most of my life, going through Star Jones-like swinging periods of obesity to being mildly overweight to (very occasionally) a modicum of thinness. Easy to say, most of my life I’ve been mild to moderately overweight at a minimum. I’ve gone from being a lifetime member of Weight Watchers happily at goal weight to returning later, tail between legs, to attempt to get back to goal weight. I’ve considered myself someone who has a compulsive eating disorder (but having looked at super-sized families at theme parks I know I’m not alone in this). I have stopped and started and stopped running programs in the past so many times that I’ve probably already run enough to train for a marathon, quarter mile out of breath jogs at a time. But after a couple of months the lure of eating takes over, which gets me out of an exercising frame of mind into one of Cheetos on the couch. (This time I think I’m ok for the long haul with the TNT program.) To this day, I bristle when anybody calls me “Big Guy.” I know they don’t really mean anything by it, but it’s not a term of endearment to me. So when you see me and feel the need to call me that, consider yourself warned.
So, with that, some of my first thoughts after first being diagnosed with leukemia on that night before Christmas 2001 might not seem as odd. That night, one bit of comfort was that, assuming I lived, I’d become a Nicole Richie-esque thin cancer patient, and perhaps I could keep it off. And if I didn’t make it, I’d be thin on the way out.
Morbid? Sure. But that night was a morbid kind of night overall.
That’s why having fluid retention was such an irony. As my brother-in-law Rex said, “Leave it to me to find a way to gain weight going through chemotherapy.” I now know that giving steroids to chemo patients and their side effects are fairly standard, but not knowing that at the time, it was a bit of an ironic disappointment.
Yesterday we had the latest coached run. At the coached run we meet as a group and run a long run at a set course with waterstops along the way. Over the course of the training at these every other Saturday runs the mileage is increased as part of the program in preparing for the 26.2 miles, going as far as 21 miles before the marathon.
On this weekend, the run was to be anywhere between 6 and 10 miles, depending on what race you were doing and what your previous preparation has been. I had run as far as six miles a few times, so I thought I’d run eight this weekend.
The course was along in Half Moon Bay, from Pillar Point Harbor and down the oceanside. I’ve got some pics below; see the full set on my Flickr site at the link below:
We started at 7 am, and with Daylight Savings Time started, it was foggy and fairly dark.
We continued running along the ocean, near some of the resort hotels and homes along the seaside. Beautiful.
We started running along the beaches in the HMB area along the coast. I started conversations with Paul and Joyce, a married couple who I ended up running near the rest of the way. They’re in a lot of the pictures you’ll see.
Here’s a good pic of me they took at Francis Beach….
Like I said above, one of the great things about the coached runs every other weekend is they have waterstops for the runners. This is DEFINITELY a breath of fresh air for a tired thirsty runner. And the waterstop volunteers are very encouraging. Here’s a couple of cheerleader/water stop volunteers…..
It was at this waterstop, at mile 4, where you would normally turn around and re-run the course to do eight, or to continue on another mile and turn around at the five mile mark, to do ten miles. One of the mentors, Andy, noted that if I was running San Diego Rock N Roll, that I probably should do the ten miles. And I thought, well, … OK. Might as well.
So I was off.
The course continued on another mile….
For another mile to the 10 mile turn around at mile 5.
That part of the course was great. Along with the ocean on one side, there’s a dirt course on the other side of the asphalt we were running on where horses and horseback riding would take place. It was a great sight.
And it went well! One of the great things about these long runs is that they are on such incredible courses — it really helps take your mind off the challenges you’re putting your body through. I don’t recall feeling pain at all during the run. I wish I would always be able to say that, but I think the program is designed to help in that way.
See me smiling? This was at about mile 8.5!
And I finished. Ten miles! Didn’t seem to be that bad. I wasn’t fast, by any stretch of the imagination. But I’ve realized that the celebration of the moment, enjoying the ability to be able to run and enjoy life and what life has to offer, is much more important than breaking five hours on my first marathon.
If I want someday to worry about time, I can do that later. But now, I want to feel and experience it all. And take pictures.
I was tired on Saturday, and the legs and feet were a little tired, but nothing bad. And on Sunday I did fine. I think I might be able to do this.
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.
I introduced Doug a while back, but had great news about him today. Two things —
1) He leaves tomorrow for Rome. Lucky him… He’s attending the Rome Marathon as a honoree/cheerleader/supporter for the TNT marathon training team he has been working with. And, spending a couple of weeks there.
2) Much, much more importantly, he had his most recent testing and found out he’s still disease free.
Doug has a chronic form of lymphoma. Living with a chronic disease in remission is tough, so to have another report that everything is free and clear…. that’s so terrific.
Here’s a link to his bio, for more info. It’s a great story.
And Doug deserves it. He is a tireless volunteer/honoree for TNT. Since he has retired, his whole life is attending TNT events, and being an incredible inspiration for those who don’t have a connection. He’s doing something for TNT almost every day, every weekend, every training session for several TNT teams at a time. So many people have been inspired to excel and achieve because of him.
Enjoy Rome, Doug! Looking forward to pictures.
Been awfully busy with travel for work, so posts have been fewer in number. But with the pace, I’ve still managed to keep up with the marathon training, for the most part.
Saturday 3/3 was probably the most remarkable. We had our latest coached run on that day. It was along the bay front in San Mateo, south of San Francisco. It was in a beautiful trail that ran along the bay through some beautiful parks. Here are some pics I took along the run….
I did a little less than six miles that day. I had done six miles previously, but it had been prior to my recent knee injury. The knee held up well. I felt a little more tired than when I had done it previously but that’s ok.
Some of the greatest things about these runs are being able to run with and meet some terrific people. One in particular was Kathleen. She had done a half marathon for TNT last fall, and she’s doing it yet again. I loved one of the buttons on her cap — I relate to it SOOO well…..
And here are some other pics of the run.
Here’s the team manager, Becky. She loves to strike a pose.
Here’s my mentor Lee. She’s awesome. And a terrific smile, too….
From 3/3 to 3/14 — Through the remainder of the last week and a half, I haven’t made any of the track workouts during the week because of work commitments, but I have been keeping up with workouts, either running on my own or working out in hotel gyms. Hey, you do what you can.
The next coached run is this weekend. I’ll bring my camera, and will have pics again.
History #18 — February 2002 – guided imagery for healing and pain — Scrubbing Bubbles and sea turtlesMarch 5, 2007 at 8:00 am | Posted in APML, chemotherapy, My initial treatment -- induction, Stanford Hospital | 2 Comments
So far I’ve talked a lot about painful situations. Cancer and chemotherapy can be arduous, and often includes challenging situations. I’ve mentioned using morphine, Demerol, and other drugs, and I took them severe times. But I did have another tool in my arsenal — guided healing imagery.
If you’re not in California this may sound like one of those things that only happen out here, but bear with me, it is a medical intervention that worked. The cancer program at Stanford Hospital did have a program to assist patients with pain and healing through guided healing imagery. They had a special nurse with a both a clinical background and hypnotherapy. About the time of this last hospitalization I met that nurse, and began working with her.
In the sessions you select an image that help you to feel the chemotherapy and other treatments in your body, and to bring your mind and spirit to the aid of your body in fighting your illness. Then the nurse guides you through a meditation/hypnotherapy session to become at peace, and feel the healing of your body.
When initially going through this for the first time, I had no idea of what to use as this healing talisman. The only thing that came to mind, and what ended up working for me, was “Scubbing Bubbles,” the cartoon used in the bathroom tub and tile cleaner. You don’t see the commercials as much anymore, but you may recall the cartoon commercial where the tub was sprayed, and the “Scrubbing Bubbles” would scrub the tile clean. The tag line was “We do the work — so you don’t have to!”
That’s what I used. I imagined the ATRA and the chemo as “scrubbing bubbles” scrubbing the APML out of my body.
One other thing came to mind. In beginning the sessions, you start with going to a very peaceful place from yourb memories, and reliving that to become more peaceful. Here’s what came to me:
A few months earlier in 2001 I had been fortunate enough to go to the island of Maui in Hawaii for work (I do consulting with hospitals and at that time I had Hawaii as part of my territory). While there, I was able to take a kayaking/snorkeling day trip during which we went to a place called Turtle Bay. At this area we dove into this cove where dozens of sea turtles swam peacefully. I remember diving down and appreciating the gracefulness of their swimming, and the peacefulness of their environment. At one point I came face to face with one. We looked at each other for a brief but impactful moment, and then the turtle swam off. Being in that calm, clear water, watching graceful sea turtles swim about was the peaceful place I went in my guided meditation.
During one of those meditations I recalled coming face to face with the turtle. This may sound crazy, but I recall the turtle telling me that everything was going to be ok, before the turtle swimming off.
I used these techniques to help deal with the pain, and to help heal. Did I need additional pain medications? Sure. Did me thinking of cartoon commercial characters help me recover from leukemia? I think so. Did sea turtles give me peace? Oh, yes.
For those who are paying attention, you may have noticed that the last training update was on 2/18. What happened in the roughly two weeks since?
Knee sprain, that’s what. Last update I had mentioned how well everything was going, and, oh, by the way, I had a spill while skiing and my knee was a problem. It unfortunately stayed a problem. I was out most of the last full week of February with a problem knee. I tried the track workout on Tuesday the 20th, and did a little, but I wasn’t ready. I laid low the remainder of the week.
This week, I was almost ok, with very little knee pain. I was all set to try the track workout on Tuesday 2/27, until, that afternoon. Sinus headaches and icky flu feelings came over me. When I got home to change to go to track, I told myself, I’ll just lay down on the bed for just a couple minutes and go. An hour later, I wake up, face down on the bed, drool on the pillow, still in my tie and work shoes.
So I was afriaid the rest of the week would be like that. But by Thursday, today, 3/1, I was feeling good enough to let Rene talk me into running in the Marina after work. I did fine — I felt good. No knee stuff. I took it somewhat easy, doing the run/walk thing, but I did four miles. And it was another beautiful day. So I think I’m back on track.
This pic wasn’t taken on Thursday, but it is the Marina, or more precisely, at Crissy Field. Check out Alcatraz in the distance behind me.