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.
History #17 – treatment – induction – mid 2002 – second hospitalization – getting better with pineapple-sized legsFebruary 19, 2007 at 6:20 am | Posted in APML, chemo side effects, Diagnosis and treatment history, My initial treatment -- induction, Stanford Hospital | Leave a comment
After that first treatment with amphoterrible, I remember waking up the following Monday, and being told I had been out that whole weekend. It’s a strange feeling to know you had been so sick that days were gone, out of it for several days. Sounds like something out of a movie.
And thus began a whole new set of medication regimens – along with the retinoic acid, the chemotherapy, the mouth cleaning, and any number other things, there was the amphoterrible regimen.
It turned into about a five-hour process. To avoid all of the side effects, a protocol of medications and IV fluids were given ahead of time, and fluids were given after to flush the system. Steroids, pain meds, and others I can’t recall, all had to be taken before the amphotericin could be taken. And it was given every 8 hours, so I only had a couple of hours before it started again.
But it did the trick. Slowly all the infections subsided, including the pustules/skin lesions. I still had the effects of the chemo – the mouth and other parts were still affected – but the infections were gone.
But there was one more side effect that occurred, which became more of a problem for the next few weeks. To handle what amphoterrible does, a large amount of steroids are required. One of the effects of high doses of steroids was water retention. And with all the IV fluids needed as part of the regimen, my body had a lot of water to retain.
So my legs, for whatever reason, were the location the water retention occurred. Within a few days, as my health improved, so did the size of my lower legs. They would continue to expand over the next few days.
But also in that time, with the improved health, the doctors decided that it was time to be discharged. (Safer at home, remember?) I was discharged to home, with the ever-expanding legs. By this time they were the size of pineapples.
But if I had to choose between death or pineapple-sized legs, I say aloha.
So, after I had the problems with the skin lesions/green pustules, things went worse considerably faster. (Not that it hadn’t been that good up to that point, but it was worse.) My memory of those days is fuzzy, probably because I was started on a morphine IV infusion after the dermatologist hit-and-run. (At some point fairly soon it would be discontinued, but it did the trick.) I’m sure Sam or Susie could fill in a lot of details.
From what I vaguely remember on a Friday the infections got much worse, going all over the body. Whether it was one infection or several, I was starting to have more problems. I do recall a lot of vital signs being taken, and people appearing more somber about my condition. Later, Sam would tell me that my blood pressure was bottoming out from the systemic infections, down to 60/40. I do recall Sam wondering why they weren’t moving me into an intensive care unit (him being an ICU nurse, he had experience with these kinds of conditions). From what I remember the Hematology Unit where I a patient was designed to handle patients in my condition.
I remember being told later that because of my condition that my family should be contacted; that I might not make it over the weekend.
However, at that time I had the second drug that saved my life. They said it was the final effort given to beat systemic infections. It was an antibiotic officially named “amphotericin.” I found that the staff calls it “amphoterrible,” and I would know why soon.
Wikipedia describes the side effects of amphotericin as the following: “Very often a most serious acute reaction after the infusion (1 to 3 hours later) is noted consisting of fever, shaking chills, anorexia, hypo tension, nausea, vomiting, headache, dypsnea, and tachypnea.” I think it understates the “shakes” as a side effect.
So, at that worst stage, a nurse came in with an IV of amphotericin, and explained that some people have a bad reaction to it, depending on how it effects them. She would stay in and watch me, and if I started having problems, she’d bring in more medication.
The infusion started okay, I remember her and Sam and I having a nice conversation. Then, I recall starting to shake. The shakes started with just a minor tremble, and turned into full scale shaking all over my body. It was uncontrollable, like being tossed in a blender. I remember sitting in a chair, attempting to get up, making it to the bed. By this time the nurse had come back in with what I think was Demerol that was given IV push.
That’s all I remember for the rest of the weekend.
I’m sure that this medication was what brought me back from the edge, from that serious condition. If that amphoterrible had not taken effect, I probably wouldn’t have remembered anything else. Ever.
History #15 – second hospitalization, mid January 02 – skin lesions, or, why I don’t like dermatologistsFebruary 14, 2007 at 6:27 am | Posted in chemo side effects, Diagnosis and treatment history, My initial treatment -- induction, Sam Cantin, Stanford Hospital, TNT | 1 Comment
This post is about a part of my treatment that’s one of my favorite stories to tell to participants in the Team in Training endurance training programs. I like to tell it when the season gets into the longer and more physically difficult parts of the program. I know many of the TNT volunteers who’ve been around don’t like the story, since it is more than a bit gross. But I think it’s a good reminder of the things that blood cancer and chemotherapy patients go through, that maybe their pain is equal to or worse than mile 20 of a marathon.
And I’ve never heard of anyone having something like this. Which proves a point I make: When you’ve heard the story of one leukemia patient, you’ve heard one. Everyone has had something a little different happen to them.
It was a few days into this second hospitalization that a different kind of infectious process started. For some reason, it occurred only on my face and the top of my head.
Day one would start with a smallish pimple. Tiny, red.
- Later that day it would increase in size. It would turn into a reddish, boil-looking lesion, about as big as the end of your thumb.
- Day two the red boil-looking lesion would turn green, with pustule-like stuff inside of it. Other new small pimples would begin, increasing in size that first day.
- Day three the green pustule would turn black. They would have this scaly-looking texture, no longer inflamed or pustule-filled. They would remain that way for several days, and then fall off. New day one red pimples would begin, as would new day two green pustules.
None of this was painful, mind you. But it was a bit awkward to be seen in public, which really wasn’t an issue, as I still had to wear the haz-mat-looking HEPA filter mask and drag an IV pole when outside. (Remember, as I was frequently reminded, the hospital was much worse than the bug-filled deadly home environment.)
Then came the day that this innocuous but ugly condition turned painful. And it wasn’t the pustules themselves that made the condition painful. What made it painful was … a dermatologist.
I now dislike dermatologists intensely. I’m sure they’re nice people, as were the dermatology fellow and resident who came into my hospital room that day announcing they were going to try to diagnose the bug that was causing the pustules. They were two pleasant females, but with a sadistic streak that soon became apparent.
OK, I’m being dramatic. But what they did say was that they had to biopsy one of the green pustules to try and culture the bug in there, in hopes of finding the right treatment for it.
“Oh, and by the way,” they said as they were taking out their scalpels to obtain a biopsy, “while we can deaden the skin around the lesion with xylocaine, we can’t deaden the inside of the green pustule. And unfortunately there are live nerve endings in there. So putting the scalpel in may hurt a little bit.”
So they put the scalpel in. And they pushed back and forth inside, trying to get a good sample.
Later, Sam, who was in the hallway talking to the nurses apparently to avoid the unpleasantries unfolding inside my room, told me that the scream I made could be heard down the entire length of the Hematology Unit.
This was the second time I was aware of being put on a morphine drip in my hospitalizations at Stanford. So, soon after, I felt ok. They never did figure out what caused all that.
As it turns out, this was going to be one of the better days of this hospitalization. I had more life-threatening, if fewer green pustule-filled, adventures ahead.
And by the way, you can see one of the final black pustule remnants in the picture in the header at the top of this blog. Look at my forehead. That was the last of them. If you look closely, you can see some very faint scarring in a couple of places on my face still. Ask me sometime and I’ll show you.
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.
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.
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 #10 – treatment – induction – first hospitalization – last week December 2001 – Merry Christmas…February 3, 2007 at 7:01 am | Posted in AIG, chemo side effects, My initial treatment -- induction, Sam Cantin, Susie Engard | Leave a comment
When I’ve spoken to groups for the Leukemia & Lymphoma Society over the years, I sometimes started with a question – “What were you doing Christmas 2001?” My answer was, in Stanford Hospital getting treatment that would save my life. (A good opener – very dramatic and catchy.)
In the days before Christmas 2001, I had the preparations for chemo made as described above, but felt good. The mental attitude was another thing. All of the preparations increased the fear of the unknown. Mouth sores? Infections? I wasn’t having headaches from the ATRA, but still worried about that. And although the prognosis was good, there was that 20% possibility of not making it to remission or surviving. It was all still there, looming. And all one could do was to prepare, and think about it.
One thing that really helped was my connection to my work. At the time I was working as a healthcare consultant for a medical malpractice insurer, and my job was to travel to places all over the western US, including Alaska and Hawaii. I really enjoyed the travel, and the content of the work. I was able to do education and write professionally for work newsletters and other things. At the time of my illness, I had been working on a risk management newsletter for long-term care. I had an outline, and all the content laid out in bullet points. So I had asked to have my laptop brought to the hospital, and to keep my mind off the uncertainty I worked some on the publication. I also sent emails to my co-workers, not just about finishing that publication, but to tell them about how I was doing.
My connection to the people of my work was a godsend, too. I was always very open with what was going on, what was about to happen, and how I felt. I remember reading a story about a woman in the early years of treatment of breast cancer who went through treatment without telling anyone – most of the family, co-workers and friends – for a decade. She hid all the details of her illnesses, taking “vacations” when the symptoms and treatments got worse. Most never knew until just before she died.
I could never do that. I didn’t want to be private about this. There was something about telling others about what I was going through, and implicitly soliciting their thoughts and prayers, that I knew would help me. So I was emailing from the hospital room to not just work, but to old friends and all my family. Not long after admission, I started getting cards and calls from everyone. It really helped. Others started sending emails, just talking about normal routines and things that happened at work. It really really made a huge difference.
But I suppose the one thing that kept me sanest of all was Sam and Susie. One, or the other, or often both, had been there all the time those first few days. They were there through it all – the insertion of the pic line, the shaving of the head. And they kept me grounded – they worried about me, probably than I worried about me.
And probably the best thing they did for me was to make my Christmas and New Years of that holiday season as best it could be. They worked to find various kinds of foods I wanted, that I could eat. Sam made incredibly terrific homemade pecan pies – and he was smart enough to make enough for the staff, which made him very popular. I recall wanting pizza something fierce, which of course was off-limits (no cheese). Somehow they got some processed cheese and did something. I remember getting some kind of cheese at that time, and it was really great. They both decorated the room, and were there to help me make it through those times.
The best thing, though, was a gift Susie got me. I’ve mentioned it already in her own post honoring her, but it’s worth repeating here. She gave me a battery-operated candle, with a card on it that read, “To remind you there is light at the end of the tunnel.”
That’s exactly what I needed at that time. In fact, I still need it today. We all do.