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.
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.
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.
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.
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.
On Saturday the 27th we had the official start of the training season for Team in Training. It’s called the kickoff, and over 500 people who are training for, or coaching, all of the sports TNT has for this season gets together and gets energized for the cause.
In the main program, Karen Nelson, the head of the Silicon Valley TNT program, starts off the program talking about how the funds raised will be used. She said there are specific research programs at Stanford that are funded by the Leukemia & Lymphoma Society (L&LS). Nice to know that funds go directly to research done right here.
Then we heard a keynote speaker, an honoree who tells her story. I’ve done these in years past, and know what an honor they are to do, and how powerful it is to tell people of your story. Remember, while I have been around TNT for many seasons, most of the people participating have no connection to blood cancers, and may never have heard some of these stories. The training programs are so good, that many people sign up and participate just for the opportunity to complete an endurance event. So this kickoff speech is huge motivator.
Carol was a terrific person to accomplish this. In her story, she said she’s unusual, in that she was diagnosed with a chronic form of leukemia, but had never progressed to the point of needing treatment. So she’s been an honoree and a participant, having walked a marathon, rode a century bicycle race, AND completed a sprint distance triathlon. And you’d never ever guess all that from looking at her. She looks like the very friendly lady in front of you at Safeway.
However, she’s begun to have symptoms, and likely will need to start going through treatment. So she made a tremendous appeal for further research to assist in her recovery. Even more devastating, she mentioned some other honorees who are beginning to lose their battle – one is in Stanford right now, fighting a fungal infection in her lungs. Carol did a tremendous job and was very inspirational. My thoughts are with you through your treatment, Carol…..
Then we broke into specific rooms for our own groups and specific teams. I’m part of the North Peninsula Run Team, which trains for running a marathon in locations just south of San Francisco on the “peninsula.” There we were introduced to the program, our coaches and other volunteer assistants, and the training program.
But the big motivating thing about the kickoff was not me and my program, but once again being an honoree. An honoree is a patient who works with the team and introduces those who don’t have a connection to one of the blood cancers to the disease and the recovery. That’s what this program is all about. And as I’ve said earlier, this will be a unique (for me) opportunity to be a participant/honoree. I think I’ll be able to make an even more unique impact on the participants, going through what they are going through while introducing them to what I went through. These kickoff programs are motivating for me in normal years; I am REALLY REALLY looking forward to this season.
And so it begins! Yikes!!
The program itself IS kinda daunting. We will slowly build up mileage each week as a group on our long runs on Saturdays, up to a height of 20 miles a couple weeks before the marathon. That will be the highest before the actual marathon (26.3 miles – apparently not running the whole thing is fine). There are lots of parts to the program, but it includes weekly runs and coached track workouts, with lots of clinics and other information about completing the program. I know I can do it, since I’ve seen people in worse shape than I am start and complete a marathon. BUT ME????
I know there will be a lot of support. The TNT program is great in that we have a whole group of dedicated volunteer coaches, captains, mentors and other great people who will support, encourage and steer me toward the completion of the program. I’ve seen them do it for hundreds of novice runners before me, and they can do it for me.
Here’s one of the big reasons I do this — Carolyn, perhaps the sweetest person I’ve ever met, and a long time volunteer for the cause….
And Sam. He’s going to be an honoree again this season, so I’ll be glad to have him there.
On December 21, even though I had a appointment with a hematologist that I implicitly knew would change my life, I went to work. At least I think I went to work that day, I can’t remember for sure what I did that day after the Christmas party with my co-workers. My appointment was at 4 in the afternoon. When I went in, the hematologist looked at me, looked at the bloodwork my primary care physician sent, and went into the other room. When he came back, he told me those words that changed my life — “You have leukemia.”
“You have leukemia.” I knew it was coming, but it still shocked me. I was numb.
He had no way of knowing what kind, or what the prognosis was, without further testing. So he went in the other room to had made arrangements for me to be worked up at the Hemotology Clinic at Stanford Hospital that next morning. He gave me the name of the hematology fellow — I remember talking to him on the phone in the first hematologist’s office that afternoon — and directions on where to go in the morning. I was scheduled for 7 am that next morning.
I went home. Sam was asleep (he had been working nights, and had to work that night, so he was sleeping to be ready for work that night). We talked a bit, and Sam reiterated that no matter what I would go through he would support and care for me during my recovery. He was terrific and supportive. He went back to bed, since he had to work.
I then didn’t know what to do, who to call. I tried calling my sister and for some reason she was unavailable, as was the rest of my family. Then, all I could think of was to call my boss Emily in Atlanta at home and tell her, well, I wouldn’t be at work for a while. I don’t remember much of the conversation, but I do remember breaking down on the phone with her. I was crying, she was crying. She was terrific, and said she would keep in touch with Sam to know what was going on.
More of what occurred that day in the next post.
Prior to December 2001 I was in generally good health. On the second weekend in December, my former partner Sam and I were on vacation in Vancouver, CA. I recall being in the hotel room and finding a bruise on my arm, one of those moments where you go, “Hmmm, I don’t remember hitting myself there.” I think I found a second one on my torso before the weekend was over.
Also during the weekend, at one point we were walking up a steep hill to go to a restaurant. If you’ve ever been to Vancouver, you may recall that the city is on hills from the water’s edge going to the main part of town. About half way up the hill, I had to stop. I was severely out of breath. Now, I wasn’t in the best shape — if you’ve known me, you’ll know that most of my life I’ve had a few pounds on me more than I should, at times more than others. But this time the shortness of breath was much much worse. I was not just winded, I was gasping for air. I did make it up the hill, but avoided them for awhile.
A prudent fellow might have thought “time to go to the doctor.” But I was traveling a lot for work at the time, and had a couple more large important trips to take before the holidays got into full gear. So, like a lot of people faced with something like this, I put it off.
If you’ve read the tab above to go to the “About APML” page, you’ll see I was already having two of the big symptoms of APML. But finding that out was still a few days and symptoms away.