The marathon — more of the aftermath and what it all meant

June 7, 2007 at 4:58 am | Posted in chemotherapy, marathon, Rene McGillicuddy | 1 Comment

First, the physical. I had pretty significant blisters on the ball of my feet, both of them. One had a blister a bit smaller in size than a credit card. Luckily, they have pretty much healed, although the feet are still a bit tender.

And I moan a lot when I get up from a lying or sitting position, particularly when I have been there for a long time. I sound just like an old man. Which I suppose I’m becoming.

Fortunately, there really hasn’t been any other physical ailments. I’ve recovered really well.

The biggest changes have been mental.

You know, the end of the marathon itself had not been one where I was in the best of mental states. For about the last ten miles or so I had such a challenging time with the heat, dehydration, and everything else, that the end of the marathon took so much out of me — I was struggling and in such pain that I couldn’t think about what it meant. I was just so over everything and was ready to finish and take my shoes off.

But the longer I get away in time from the marathon, the more it means to me. I didn’t go into this marathon “for myself” — I did this really for to celebrate my 5 years of being disease free, the cause, to expand my involvement, to raise money, and to be an even bigger motivator to others. For me, it was never a question in my head that I’d finish the marathon. Of course I was going to finish the marathon. I’ve been around the Team in Training program, and knew it was very good in helping new runners finish a marathon, and I knew the program would help me to do that. So it was never a question I would complete it.

But it’s hit me in the last couple of days — wow, I just completed a freakin’ marathon! That’s a HUGE deal, as impressive as other things I’ve done in life.  One of the TNT captains noted that, if estimates that 280,000 people in this country have run marathons, and there are about 300 million US citizens, that means that roughly only 1 in 10,000 people have completed a marathon. Not that many people! It’s impressive an achievement, even without all the other things about it. Particularly me, someone who’s not been athletic in any way in my previous 43 years, some dabbling in high school football notwithstanding.

Another thing I’ve realized is not that I’ve just completed it, but what it took to complete it.  One of the TNT coaches, the one who ran with me to the finish line at the marathon, made this comment about me finishing in light of the problems I had — he said, “Anyone can run a marathon when they are feeling well but it takes a lot more to stick one out when you are not. You showed me a lot out there on Sunday, you have a lot to be proud of.” He’s quite inspirational himself. More on him and that experience in a later post.

Another thing a couple of people have pointed out to me — It isn’t that I’ve JUST run a marathon, something extremely noteworthy by itself, but I’ve run a marathon AND survived leukemia, two very significant and inspiring accomplishments. My good friend and running partner Rene mentioned to me how phenomenal it is to get to five years disease free, and to achieve in an endurance event (she’s also five years disease free and she’s done a 100-mile bike race along with several triathlons). She’s very proud of me, and is pretty insprirational to me as well, and she’s right.

So while the physical recovery from the marathon is almost complete, the mental and emotional experiences seem to continue and develop each day.

I’m quite thankful, and amazed.

Those in whose honor I run – other honorees, other patients, other families

May 21, 2007 at 4:27 am | Posted in chemotherapy, honoree, Reasons why I run | 1 Comment

One of my very good friends from many years back with whom I’ve kept up – Susan – told me recently that she was very proud of me for all I’m doing training for a marathon, being a recovering (recovered?) patient. 

I thought that was very odd, for a couple of reasons.  First, Susan herself has done a fundraiser/endurance event for Team in Training – she did the Treasure Island Triathlon in San Francisco in 2002, and at that time I was one of her honored patients in whose honor she ran.  I saw her do it, and have a picture of the two of us just prior to the event.

Susan did an Olympic distance – no small feat herself.  Training for a tri is very demanding, with many days twice daily training events.  I was as much proud of her as she is me now. 

The other reason I always find it odd for people to tell me how proud they are of me for how far I’ve come, is that I still feel like I haven’t gone through anywhere near what other people have gone through, who inspire me.  I’ve already introduced you to two honorees, Doug and Carol.  Another is Travis.

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I’ve known Travis for several TNT seasons.  He was a speaker at a recent honoree event, and it reminded me of what so many other people have gone through – are going through – will go through some day, without better treatments.

While in high school, Travis had a form of leukemia.  He underwent chemotherapy, and went into remission.  About 4 ½ years later, he relapsed.  This time he had to have both radiation and a bone marrow transplant, after being lucky enough to find a bone marrow donor.  The BMT required SIX MONTHS straight in isolation.  He mentions that he had vomiting over 40 straight days while there. 

But he made it to remission, and currently has no evidence of the disease himself.  He has gotten married, and leads a healthy full life.  He’s been both an honoree and a participant for TNT for several seasons. 

Travis is a reminder of me of just one of the countless examples – ones whose stories we may not have heard – of people who have struggles that go beyond what we can comprehend.  And right now, there are people in hospitals all around the country – Stanford, UCSF, MD Anderson, everywhere – who are going through similar or worse.  I run in honor of all of them as well.  The patients of all ages, parents, spouses, children, grandchildren, friends – all of whom struggle with this. 

I used to feel like my story wasn’t as good as others, that other people have struggled more than me, and perhaps with the good outcome I had (no radiation, no BMT) that I wasn’t as meaningful a story as others. 

 Then I realized it – my story is a good story for participants to hear:  my story symbolizes the hope that new treatments can change deadly diseases to ones with positive outcomes, that allow for cures.  We need more stories like mine, and research that TNT funds can help make those happen.  So I don’t feel as undeserving to be an honoree anymore. 

History 22 – February 2002. Sunny

April 2, 2007 at 2:37 am | Posted in chemotherapy, Remission to full remission, Sam Cantin | Leave a comment

I’ve gone back and forth whether I should post this post. I’m going to do it, if only to show the ups and downs of life. The last couple of training posts have been upbeat, as has this whole training process and blog writing has been. But the time period I’m writing about right now, February of 2002, was a very bleak time in my life. It’s a good reminder that life has its good times, and its bad times, and we should remember both. So, I’m posting this, one of the more depressing things I’ve ever written. It’s about the death of one of my pets during my recovery.

Remember, as I described in previous posts, at this time I was quite fatigued, adjusting to the very difficult life of a chemotherapy patient, with the cycle of almost OK – infusion – very sick and fatigued – recovery, and then starting the downward spiral again. And likely depressed. But I’ve remembered another incident that month that contributed to all the things that were wrong at that time.

Not too long after my sister Karen left, in early February, I got an earache, which developed into an ear infection. My temperature went up, and I went overnight for IV antibiotics. I was able to go home fairly quickly.

At some point in this timeline, either when I came home from the hospital in January or when I came home from this brief hospitalization in February, our cat Sunny, short for Sundance, appeared lethargic. We took the picture at that time that is included here. Another picture taken at this same time, in an edited version without Sunny, is what I’ve used for the picture in the banner to this blog above; this is the full picture with Sunny.

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I got Sunny and his brother at the same time; I had been looking for a good male cat name for a pair that would go together, and chose Butch and Sundance. Butch was at the time a tiny fluffy white kitten, so Butch seemed appropriately ironic; Sundance was an orange calico whose name that shortened over time to Sunny, which seemed fitting as well. We had another cat at the time, not related, and named Simon. Three cats….

Over the next few days Sunny continued looking really bad, had less and less of an appetite, and was not using the litter box. A visit to the vet found that he had lymphoma, a large tumor affecting his intestines. The tumor was now surrounding his intestines and would eventually close it off. The vet said that we could do kitty chemotherapy, but that would be upwards of $10,000. He had about a week before it got really bad.

So we took Sunny home, and started giving him IV fluids. He would look at food, but not eat. When he got so weak that he couldn’t jump up on the bed where he would sleep with us, we knew it was time.

We took him in, and we allowed him to pass peacefully.

I tell people now that losing Sunny was in some ways worse, much more intensely painful and difficult, than losing either of my parents. Certainly not as deep of a loss, of course, but more intense and immediate. For both my parents the end came at the end of a difficult illness. Plus, I had been living many miles away from both of them after college; with my dad I was in California when he was having his toughest time at the end. I called and visited frequently, but it’s not the same as being there. With a pet, however, when they’re gone, the pain comes back every time you look at where they’re NOT in your home – they’re not sitting in that windowsill they loved, they’re not in the kitchen at mealtime meowing for food, they’re not in bed with you as they have been every night, etc. It’s a scab that gets picked every time you notice they’re not where they have been routinely for years. The pain is felt every time, several times a day. Surely, my parents meant much more to me, but the pain didn’t come back so immediately at all times, like it was with Sunny. And Sunny was young, about 6 years old at the time. He would have had many years left in a normal lifespan.

Of course, it might have also been more painful with what I had already gone through. To contemplate and go through a death, when I had been close to one myself, undoubtedly had to have made the situation that much more intense.

Here’s the irony of this situation: I get a blood cancer, fight very hard to survive, come home, and my pet has a blood cancer of his very own, and doesn’t make it. I know life really doesn’t work this way, but sometimes I think that Sunny gave himself so I could make it. It’s much too coincidental otherwise.

THIS, along with the other issues I was going through, is why I don’t remember February 2002. What are those lyrics from the Streisand song? “What’s to painful to remember we simply choose to forget.”

I may have forgotten about the ending, but I haven’t forgotten about Sunny.

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History 21 – February 2002. Time I couldn’t remember, and when I did I realized why.

March 31, 2007 at 5:59 am | Posted in chemo side effects, chemotherapy, Remission to full remission | Leave a comment

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.



History # 19 – Late January/early February 2002, discharged to home….

March 21, 2007 at 8:09 pm | Posted in APML, chemo side effects, chemotherapy, Diagnosis and treatment history, My current training, My initial treatment -- induction | Leave a comment

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.

Those in whose honor I run #6 — Justin Waters

March 14, 2007 at 6:26 am | Posted in chemotherapy, Reasons why I run, Terry Timmons | 1 Comment

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.

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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.

History #18 — February 2002 – guided imagery for healing and pain — Scrubbing Bubbles and sea turtles

March 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!”

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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.

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I have several sea turtle images around my house, and I feel strong connection to them.

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.

History #11 – induction – first hospitalization – discharge into “crazy backwards nonsensical land”

February 14, 2007 at 5:39 am | Posted in chemo side effects, chemotherapy, Diagnosis and treatment history, My initial treatment -- induction, Sam Cantin, Stanford Hospital | Leave a comment

Having spent the holidays 2001 in the hospital, having lines inserted, beginning chemotherapy and ATRA, coming to grips with all the physical and emotional changes, the first few days of 2002 were seemingly uneventful.

The biggest change was the beginning of the effects of the chemo that were promised. Remember the caution about mouth sores, and the mouth-cleaning regimen I started several times a day? The mouth sores did come. I can’t remember exactly what they were or what they looked like, but I do remember having a sore throat, and ulcer-like lesions in the mouth. At this stage I didn’t get nauseous or have other gastric problems, but I do recall wanting softer food as time went on, and it becoming more difficult to speak.

You’d think that with the onset of some of the side effects of the chemo and the potential for infection that you’d stay in the hospital. However, after a few days into the New Year my doctors informed me that I was to be discharged. I would get antibiotics on an outpatient basis in the hematology clinic. If you think I got an earful about being careful about anything that could cause infections while in the hospital, just wait. I got a huge 3-inch thick 3-ring binder on anything and everything that can cause infections at home, and things to stay away from. Among them included:

Houseplants and gardening. The dirt has bugs.

  • Fresh food of any kind. Anything not processed, canned, pasteurized, or otherwise denuded has bugs.
  • Outside air. Anytime I was to go outside I was to wear a mask with a HEPA filter, which supposedly filters out most of the bugs. It was encouraged to mostly stay indoors with the indoor bugs rather than the outdoor bugs. Besides, wearing it made me look like those guys who clean up after industrial spills.
  • The kitty litter. That too has bugs. (That one wasn’t that bad for me, but was for Sam. We had 3 cats at the time, so you can imagine the amount of work for him from that.)

There were many, many more restrictions than that. But the entirety was intimidating and overwhelming.

Prior to discharge, the staff went over these restrictions with me. While I was home, I was told to be ever vigilant for signs of infection, and take my temperature several times a day. If I did have a fever or otherwise seem to be at the early stages of an infection, I was to IMMEDIATELY call the Hematology Fellow on call so I could be readmitted for emergency antibiotics. Remember, the whole purpose of chemo is to kill fast growing cells, which include white blood cells. So after a week or so of chemo my white count was in the negative range.

I had no way to fight infections. Yet, I was going home to a place apparently filled with bugs that would give me infections. And if I got an infection, I could die immediately. And I was 30 minutes away from the hospital if any one or all of those bugs gave me a nasty life-threatening infection.

While hearing all this and taking it in, I asked, “Wouldn’t it be better to just stay in the hospital rather than go home?”

The doctor told me, “Oh no, you’re much more likely to get an infection in the hospital. Home is safer.”

Home is a place I could die within a few hours of most everything, and it’s safer than the hospital?

This is the crazy backwards nonsensical-land leukemia patients find themselves.

 

History #9 – treatment – induction – first hospitalization – last week Dec 2001 – Side effects: be afraid! Be very afraid!

February 3, 2007 at 6:53 am | Posted in APML, chemo side effects, chemotherapy, Diagnosis and treatment history, My initial treatment -- induction, Stanford Hospital | Leave a comment

So, in the first few days since beginning treatment, I had a pic line inserted, and began getting chemotherapy through it. I was also beginning to take ATRA, the small pills that make the difference in the good prognosis for my subtype of leukemia. And they had begun the process of getting me ready for the next challenges – the side effects of these treatments that would save my life.

As I mentioned, the only possible side effect of ATRA was a doozy – some people died initially while taking ATRA because of reaction to it. To have reactions not only would have been potentially lethal, but it would have required (if I survived) other forms of treatment. So they watched me closely for headaches, the initial sign of impending toxicity. I got asked it a lot. Very fortunately, I never did get the headaches.

But the side effects from the chemo were a different story entirely. You were guaranteed to get many if not all of them, and I spent much of the first few days of hospitalization getting prepared for them. First and foremost, because chemo wipes out your white blood cells you’re pretty much defenseless against infection. This would be true not for just this hospitalization, but for most of the first few months of 2002.

This caused numerous challenges. First, I had to be in an isolation room, on the hematology ward, which had all isolation rooms. Not the complete very strict isolation that bone marrow transplants have, but with a few restrictions to avoid infectious pathogens. You couldn’t have plants or flowers in the room (to avoid the contaminants that are in the dirt), and the diet couldn’t allow for any fresh food (once again to avoid possible contaminants). And no cheese or yogurt. So the food was all processed and/or canned. These restrictions would be worse when I went home, as you’ll see later.

The other problem with chemo, along with the chance of infection, was the effect it had on the mouth and the rest of the digestive system. A little biology is in order here. What chemo does is kill fast growing cells all over the body. The intent is to kill the bone marrow that produces blood cells, with the hope that what grows back is healthy bone marrow. But it kills other fast growing cells in the body beyond those. One that is seen in a lot of chemo patients is the loss of hair. Hair follicles have very fast growing cells, so when they die the hair falls out.

But the other group of cells that grow fast are in the digestive system. All of your digestive system – from the mouth, the throat, the stomach, the intestines, the colon, the rectum, everything – have fast growing cells. So, the chemo affects them as well. You may have heard of the vomiting and nausea that chemotherapy patients have. This is why.

For the initial purposes, though, the mouth was the biggest concern. From what they told me, mouth sores are very common, and pose a great challenge. Think of it – if you brush your teeth with a stiff brush, you sometimes have gums that bleed. This not a good time for patients who have a bleeding disorder to have bleeding gums. Also, during the time of chemo the ability to fight infection is gone, so this is a very quick and easy entry point for germs to get in the body that could kill. So, they had patients immediately get into the habit of good oral care that could be done throughout chemotherapy, using special foam brushes, special liquids in place of toothpaste, and special “swish and swallow” fluids to kill germs and other stuff in the mouth.

So, they had me begin to do oral care like that four times a day, and to be rigorous and diligent. They said good habits formed before any sores or other problems start solve problems later. Another thing they did was rather interesting. There was one really nice nurses aide who came in one day with a head shaver. She made the offer of shaving the head at that time. I was still a week or so away from hair loss from the chemo, but this made sense – instead of waiting for the hair to fall out, to look in the mirror each day to see if it was still there, and dreading the day it was gone, cutting the hair ahead of time gave me control over the situation. If I were going to have to lose my hair, I would rather do it on my own accord. It was quite empowering.

Still, even with a shaved head, frequent oral care, and processed foods, I felt fine. But all of this preparation was an omen of things to come. And I waited.

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