History – treatment

 

History #8 – treatment – induction – December 23, 2001 – pretty poison

Published February 3rd, 2007

So, a couple days before Christmas 2001, I had begun the first stages of what was the beginning of chemotherapy to get to remission. The first few days were relatively free of pain, from what I can remember. It seemed more to set the stage for further treatment and challenges, rather than be difficult in and of itself.

Three things started the treatment process. The first was the insertion of what is called “pic line.” A surgeon comes in and makes an incision into your chest above your heart, and into one of the blood vessels that goes into your heart, then sutures it into place. As bad as it sounds, it is relatively innocuous (much less so than the bone marrow biopsy). I had it for almost five months through the treatment and recuperation. It was more difficult to shower, as you had to have it covered, but otherwise it remained on your chest without much trouble. In fact, it made having blood drawn for tests a cinch, since it avoided multiple needle sticks – they just took it straight from the pic line.

The real reason for the pic line, however, was for a purpose that became apparent quickly. Not long after the line was in, a nurse came into my room. She was pretty much covered from head to toe in protective equipment – special gown, thick gloves, and something to cover her face. She looked like she was one of those “haz-mat” clean up people in their special garb. She said she was going to give me my first dose of chemotherapy, through the pic line. I asked her why all the special get up, and she blithely tossed off, “Oh, the medication is toxic, and if I get any of it on me it will damage my skin. I have to be careful.” This as she connected to IV bag containing the chemo to a tube that she connected into my pic line. The pic line would deliver that “toxic” chemo directly into my heart. Great.

She hung it, and it was this very beautiful brilliant red color. I watched it slowly loop through the IV tubing into the end of the catheter that went into my pic line. Pretty poison, indeed.

The third thing that started in the treatment process at that time was other medication that was brought into me those first few days. Instead of pretty liquid poison, a nurse brought in a medication cup with about 10 pills the size of small peas. This was the ATRA, the treatment that makes APML the “good” kind of leukemia to have. I would taking those pills for the next year or so to ensure that the healthy bone marrow continued to pump out good cells. And the nurse could come in her/his normal uniform to bring it to me.

I would be taking ATRA, that is, assuming I didn’t have a reaction to them, and require other types of treatment. The staff would be watching me for signs of that. The main symptom on oncoming reaction was headaches. So I got asked the question of whether I had a headache a lot in the coming days.

 

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

Published February 3rd, 2007

 

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

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

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

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

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

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

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

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

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

 

 

History #10 – treatment – induction – first hospitalization – last week December 2001 – Merry Christmas…

Published February 3rd, 2007

 

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.”

light-at-end-of-tunnel-candle-005.jpg

That’s exactly what I needed at that time. In fact, I still need it today. We all do.

 

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

Published February 14th, 2007

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 #12 – induction – early January 02 – first time home – but not for long

Published February 14th, 2007

 

 

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.

 

History #14 – mid-January 02 – second hospitalization – first few days

Published February 14th, 2007

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.

 

 

History #15 – second hospitalization, mid January 02 – skin lesions, or, why I don’t like dermatologists

Published February 14th, 2007 0 Comments Edit

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.

 

 

History #16 – treatment – induction – mid 2002 – second hospitalization – “amphoterrible”

Published February 19th, 2007 0 Comments Edit

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 #17 – treatment – induction – mid 2002 – second hospitalization – getting better with pineapple-sized legs

Published February 19th, 2007 Comments Edit

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.

 

 

 

 

 

 

 

 

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  2. It’s in fact very complicated in this busy life to listen news on
    Television, therefore I only use world wide web for that reason, and take the latest information.


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