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.
Another week of training since the last update, with a slightly unfortunate ending.
I traveled for work out of town this past week, so I was not able to attend the Tuesday track work out. I was able to put time in on a treadmill twice this week, both for about 50 minutes running.
I went skiing over the weekend to Tahoe. I’m learning this season, and I’m getting it. Really enjoying it.
And I really got it on Saturday, after arriving late Friday from Houston and the drive up. (I had done the treadmill that Friday morning.) On Saturday, it was a beautiful day of skiing, clear, warm for a winter day, and good conditions since the snow last weekend. It went well, although I did take a spill on the first run of the day. I felt my knee twist slightly, but nothing else at that time. All was good, and the rest of the day was a blast.
However, that evening I started feeling tightness and a little pain on the inside part of the knee. It began to swell slightly, and in a while I was limping. It was a mild pain, and only periodically when walking. But I did the RICE thing – rest, ice, compression, and elevation.
This morning it hadn’t improved, so I didn’t go skiing. It was still giving me problems. I’ll be home tomorrow, and can talk to the TNT coach on Tuesday at the track workout. I imagine I’ll be out of training for a few days. But, like Auhnuld, I’ll be back.
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.
I’m going to now actually use this as a real blog, at least for the training updates. While the history posts will be going back in time, I am going to update how things are in real time.
This updates since the Saturday 2/3 coached run at Stanford with the pics posted previously. Last Tuesday after the coached run we had our first track workout, which will be held weekly for the rest of the season. We did some running, did a lot of core stretching, and heard more from the coaches about various training principles. It’s great to get to know some of the other mentors and participants I haven’t met so far. They’re all really terrific people.
This last Saturday was an “On Your Own” run, which is held on the alternate Saturdays opposite the coached runs, which are every other week. OYO runs are for you to do yourself, although there are some group OYO runs, as oxymoronic as that sounds. I was going to go to one on Saturday, but it was pouring, and I’m still not sure if I will melt in the rain. (And I was able to help Susie move.)
Since I didn’t run that day, I ran on Sunday, on Great Highway. To make up for not running (and for that homemade chocolate velvet cheesecake that my roommate Bob made and I ate too much of on Saturday), I ran extra. I did an 8/2 run/walk and did SIX, count ’em, six miles. Took about 70 minutes, but it was a new record. The run/walk format is great. I can do more miles than before and not die at the end. I’ll definitely do the longer runs in this manner as the program continues and the miles pile up.
Yesterday, Monday, I had planned to do a bit at the gym, but work got away from me. Plus I figured I could use the day of rest after the long run yesterday.
Today, Tuesday, I flew to Houston for work, where I’m blogging right now. Since I missed the track workout, I went to a 24-Hour Fitness, and did 45 minutes on a treadmill. I feel good.
It’s amazing — now, if I do less than 45 minutes to an hour, I feel like I haven’t worked out at all. Spooky. Who is this person saying this stuff?
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.
I never met Samuel Sandoval. He was not here on this earth that long. He was born in April 2003. He was a happy healthy baby until he was diagnosed with Acute Lymphocytic Leukemia (ALL) in early 2004. He then began treatment.
His treatment was not easy. Even though our ages and conditons were quite different, I can relate to what he went through in a few ways. One of the things we shared in our treatment was the need for multiple bone marrow biopsies. I’ve already talked about my challenges with them; Samuel had the same problem. After speaking to a Team in Training group last fall his mother came up to me and said Samuel also had a number of unsuccessful attempts, and a lot of pain. At that age Samuel couldn’t speak; his mother said hearing my story was the first time she understood what Samuel had gone through. I know how he felt. I was an adult at the time; I can only imagine what it was like for him and what he was thinking.
Unfortunately, our stories diverge. Only after a few weeks of chemotherapy, Samuel lost his battle. Just a few weeks before his first birthday.
I’ve had the pleasure of getting to know Samuel’s mother, Helen. She’s a funny, dynamic person. She’s run a half marathon for TNT already, and is the Honoree Captain for the Peninsula Run Team that I’m training with.
I know it’s still difficult for her. But she gives of herself and her story so much for the cause, and she graciously allowed me to use Samuel’s story. She’s a very brave person I admire greatly.
I run in honor of both Samuel and Helen.
This blog entry has been very difficult to write. Let’s hope we don’t have to hear many more stories like this going forward. We need the Samuels of the world to run with us.
So the first weekend of the training season was the Saturday after kickoff, held on the Stanford University campus. (Irony alert — I start treatment for leukemia on the Stanford campus; I start training for a marathon for leukemia research on the Stanford campus. Yikes.)
This first major workout had a lot of introductory information, particularly for a novice runner like me — learning about stretching, etc. After a quick warm-up run, the head coach of the team, Doug, started by showing us some stretches. Amazing I can take a picture while stretching!
Then, we divided ourselves into three groups — those who were fairly accomplished runners, those who could comfortably run about four miles or so, and novice runners. I had done 4-5 miles, but just a few times, so I couldn’t call myself a competent runner yet. So I was in the novice crowd.
In the newbie group, we had a talk by two other coaches, who talked about beginning running issues. But at length they discussed doing a marathon in a run-walk fashion. They said that many runners, not just novices, do a run-walk pattern. It gives the body a chance to recover. Fairly accomplished runners are using this method to cut time off their marathons. I had been planning to use that method, since running the whole way for 26.2 miles sounds like just insanity.
So, after that, we did run around the campus. I ran with a group who were doing running six minutes and walking two. We did this for about 2 1/2, 3 miles. It was great to be able to meet more of the other runners. Amazing how many remembered me from speaking at the information meetings.
I had been doing 4 – 5 miles or so, so after run/walking 2 1/2 I felt fine and wanted to do more.
But, I do know there will be lots lots more. Within a couple of months, I’ll be doing 15-20 miles, longer than I want to be in a car without stopping, much less running. So, I’ll be patient, and go slow….
More info as the season progresses.