History #18 — February 2002 – guided imagery for healing and pain — Scrubbing Bubbles and sea turtlesMarch 5, 2007 at 8:00 am | Posted in APML, chemotherapy, My initial treatment -- induction, Stanford Hospital | 2 Comments
So far I’ve talked a lot about painful situations. Cancer and chemotherapy can be arduous, and often includes challenging situations. I’ve mentioned using morphine, Demerol, and other drugs, and I took them severe times. But I did have another tool in my arsenal — guided healing imagery.
If you’re not in California this may sound like one of those things that only happen out here, but bear with me, it is a medical intervention that worked. The cancer program at Stanford Hospital did have a program to assist patients with pain and healing through guided healing imagery. They had a special nurse with a both a clinical background and hypnotherapy. About the time of this last hospitalization I met that nurse, and began working with her.
In the sessions you select an image that help you to feel the chemotherapy and other treatments in your body, and to bring your mind and spirit to the aid of your body in fighting your illness. Then the nurse guides you through a meditation/hypnotherapy session to become at peace, and feel the healing of your body.
When initially going through this for the first time, I had no idea of what to use as this healing talisman. The only thing that came to mind, and what ended up working for me, was “Scubbing Bubbles,” the cartoon used in the bathroom tub and tile cleaner. You don’t see the commercials as much anymore, but you may recall the cartoon commercial where the tub was sprayed, and the “Scrubbing Bubbles” would scrub the tile clean. The tag line was “We do the work — so you don’t have to!”
That’s what I used. I imagined the ATRA and the chemo as “scrubbing bubbles” scrubbing the APML out of my body.
One other thing came to mind. In beginning the sessions, you start with going to a very peaceful place from yourb memories, and reliving that to become more peaceful. Here’s what came to me:
A few months earlier in 2001 I had been fortunate enough to go to the island of Maui in Hawaii for work (I do consulting with hospitals and at that time I had Hawaii as part of my territory). While there, I was able to take a kayaking/snorkeling day trip during which we went to a place called Turtle Bay. At this area we dove into this cove where dozens of sea turtles swam peacefully. I remember diving down and appreciating the gracefulness of their swimming, and the peacefulness of their environment. At one point I came face to face with one. We looked at each other for a brief but impactful moment, and then the turtle swam off. Being in that calm, clear water, watching graceful sea turtles swim about was the peaceful place I went in my guided meditation.
During one of those meditations I recalled coming face to face with the turtle. This may sound crazy, but I recall the turtle telling me that everything was going to be ok, before the turtle swimming off.
I used these techniques to help deal with the pain, and to help heal. Did I need additional pain medications? Sure. Did me thinking of cartoon commercial characters help me recover from leukemia? I think so. Did sea turtles give me peace? Oh, yes.
History #17 – treatment – induction – mid 2002 – second hospitalization – getting better with pineapple-sized legsFebruary 19, 2007 at 6:20 am | Posted in APML, chemo side effects, Diagnosis and treatment history, My initial treatment -- induction, Stanford Hospital | Leave a comment
After that first treatment with amphoterrible, I remember waking up the following Monday, and being told I had been out that whole weekend. It’s a strange feeling to know you had been so sick that days were gone, out of it for several days. Sounds like something out of a movie.
And thus began a whole new set of medication regimens – along with the retinoic acid, the chemotherapy, the mouth cleaning, and any number other things, there was the amphoterrible regimen.
It turned into about a five-hour process. To avoid all of the side effects, a protocol of medications and IV fluids were given ahead of time, and fluids were given after to flush the system. Steroids, pain meds, and others I can’t recall, all had to be taken before the amphotericin could be taken. And it was given every 8 hours, so I only had a couple of hours before it started again.
But it did the trick. Slowly all the infections subsided, including the pustules/skin lesions. I still had the effects of the chemo – the mouth and other parts were still affected – but the infections were gone.
But there was one more side effect that occurred, which became more of a problem for the next few weeks. To handle what amphoterrible does, a large amount of steroids are required. One of the effects of high doses of steroids was water retention. And with all the IV fluids needed as part of the regimen, my body had a lot of water to retain.
So my legs, for whatever reason, were the location the water retention occurred. Within a few days, as my health improved, so did the size of my lower legs. They would continue to expand over the next few days.
But also in that time, with the improved health, the doctors decided that it was time to be discharged. (Safer at home, remember?) I was discharged to home, with the ever-expanding legs. By this time they were the size of pineapples.
But if I had to choose between death or pineapple-sized legs, I say aloha.
So, after I had the problems with the skin lesions/green pustules, things went worse considerably faster. (Not that it hadn’t been that good up to that point, but it was worse.) My memory of those days is fuzzy, probably because I was started on a morphine IV infusion after the dermatologist hit-and-run. (At some point fairly soon it would be discontinued, but it did the trick.) I’m sure Sam or Susie could fill in a lot of details.
From what I vaguely remember on a Friday the infections got much worse, going all over the body. Whether it was one infection or several, I was starting to have more problems. I do recall a lot of vital signs being taken, and people appearing more somber about my condition. Later, Sam would tell me that my blood pressure was bottoming out from the systemic infections, down to 60/40. I do recall Sam wondering why they weren’t moving me into an intensive care unit (him being an ICU nurse, he had experience with these kinds of conditions). From what I remember the Hematology Unit where I a patient was designed to handle patients in my condition.
I remember being told later that because of my condition that my family should be contacted; that I might not make it over the weekend.
However, at that time I had the second drug that saved my life. They said it was the final effort given to beat systemic infections. It was an antibiotic officially named “amphotericin.” I found that the staff calls it “amphoterrible,” and I would know why soon.
Wikipedia describes the side effects of amphotericin as the following: “Very often a most serious acute reaction after the infusion (1 to 3 hours later) is noted consisting of fever, shaking chills, anorexia, hypo tension, nausea, vomiting, headache, dypsnea, and tachypnea.” I think it understates the “shakes” as a side effect.
So, at that worst stage, a nurse came in with an IV of amphotericin, and explained that some people have a bad reaction to it, depending on how it effects them. She would stay in and watch me, and if I started having problems, she’d bring in more medication.
The infusion started okay, I remember her and Sam and I having a nice conversation. Then, I recall starting to shake. The shakes started with just a minor tremble, and turned into full scale shaking all over my body. It was uncontrollable, like being tossed in a blender. I remember sitting in a chair, attempting to get up, making it to the bed. By this time the nurse had come back in with what I think was Demerol that was given IV push.
That’s all I remember for the rest of the weekend.
I’m sure that this medication was what brought me back from the edge, from that serious condition. If that amphoterrible had not taken effect, I probably wouldn’t have remembered anything else. Ever.
History #15 – second hospitalization, mid January 02 – skin lesions, or, why I don’t like dermatologistsFebruary 14, 2007 at 6:27 am | Posted in chemo side effects, Diagnosis and treatment history, My initial treatment -- induction, Sam Cantin, Stanford Hospital, TNT | 1 Comment
This post is about a part of my treatment that’s one of my favorite stories to tell to participants in the Team in Training endurance training programs. I like to tell it when the season gets into the longer and more physically difficult parts of the program. I know many of the TNT volunteers who’ve been around don’t like the story, since it is more than a bit gross. But I think it’s a good reminder of the things that blood cancer and chemotherapy patients go through, that maybe their pain is equal to or worse than mile 20 of a marathon.
And I’ve never heard of anyone having something like this. Which proves a point I make: When you’ve heard the story of one leukemia patient, you’ve heard one. Everyone has had something a little different happen to them.
It was a few days into this second hospitalization that a different kind of infectious process started. For some reason, it occurred only on my face and the top of my head.
Day one would start with a smallish pimple. Tiny, red.
- Later that day it would increase in size. It would turn into a reddish, boil-looking lesion, about as big as the end of your thumb.
- Day two the red boil-looking lesion would turn green, with pustule-like stuff inside of it. Other new small pimples would begin, increasing in size that first day.
- Day three the green pustule would turn black. They would have this scaly-looking texture, no longer inflamed or pustule-filled. They would remain that way for several days, and then fall off. New day one red pimples would begin, as would new day two green pustules.
None of this was painful, mind you. But it was a bit awkward to be seen in public, which really wasn’t an issue, as I still had to wear the haz-mat-looking HEPA filter mask and drag an IV pole when outside. (Remember, as I was frequently reminded, the hospital was much worse than the bug-filled deadly home environment.)
Then came the day that this innocuous but ugly condition turned painful. And it wasn’t the pustules themselves that made the condition painful. What made it painful was … a dermatologist.
I now dislike dermatologists intensely. I’m sure they’re nice people, as were the dermatology fellow and resident who came into my hospital room that day announcing they were going to try to diagnose the bug that was causing the pustules. They were two pleasant females, but with a sadistic streak that soon became apparent.
OK, I’m being dramatic. But what they did say was that they had to biopsy one of the green pustules to try and culture the bug in there, in hopes of finding the right treatment for it.
“Oh, and by the way,” they said as they were taking out their scalpels to obtain a biopsy, “while we can deaden the skin around the lesion with xylocaine, we can’t deaden the inside of the green pustule. And unfortunately there are live nerve endings in there. So putting the scalpel in may hurt a little bit.”
So they put the scalpel in. And they pushed back and forth inside, trying to get a good sample.
Later, Sam, who was in the hallway talking to the nurses apparently to avoid the unpleasantries unfolding inside my room, told me that the scream I made could be heard down the entire length of the Hematology Unit.
This was the second time I was aware of being put on a morphine drip in my hospitalizations at Stanford. So, soon after, I felt ok. They never did figure out what caused all that.
As it turns out, this was going to be one of the better days of this hospitalization. I had more life-threatening, if fewer green pustule-filled, adventures ahead.
And by the way, you can see one of the final black pustule remnants in the picture in the header at the top of this blog. Look at my forehead. That was the last of them. If you look closely, you can see some very faint scarring in a couple of places on my face still. Ask me sometime and I’ll show you.
Having spent the holidays 2001 in the hospital, having lines inserted, beginning chemotherapy and ATRA, coming to grips with all the physical and emotional changes, the first few days of 2002 were seemingly uneventful.
The biggest change was the beginning of the effects of the chemo that were promised. Remember the caution about mouth sores, and the mouth-cleaning regimen I started several times a day? The mouth sores did come. I can’t remember exactly what they were or what they looked like, but I do remember having a sore throat, and ulcer-like lesions in the mouth. At this stage I didn’t get nauseous or have other gastric problems, but I do recall wanting softer food as time went on, and it becoming more difficult to speak.
You’d think that with the onset of some of the side effects of the chemo and the potential for infection that you’d stay in the hospital. However, after a few days into the New Year my doctors informed me that I was to be discharged. I would get antibiotics on an outpatient basis in the hematology clinic. If you think I got an earful about being careful about anything that could cause infections while in the hospital, just wait. I got a huge 3-inch thick 3-ring binder on anything and everything that can cause infections at home, and things to stay away from. Among them included:
Houseplants and gardening. The dirt has bugs.
- Fresh food of any kind. Anything not processed, canned, pasteurized, or otherwise denuded has bugs.
- Outside air. Anytime I was to go outside I was to wear a mask with a HEPA filter, which supposedly filters out most of the bugs. It was encouraged to mostly stay indoors with the indoor bugs rather than the outdoor bugs. Besides, wearing it made me look like those guys who clean up after industrial spills.
- The kitty litter. That too has bugs. (That one wasn’t that bad for me, but was for Sam. We had 3 cats at the time, so you can imagine the amount of work for him from that.)
There were many, many more restrictions than that. But the entirety was intimidating and overwhelming.
Prior to discharge, the staff went over these restrictions with me. While I was home, I was told to be ever vigilant for signs of infection, and take my temperature several times a day. If I did have a fever or otherwise seem to be at the early stages of an infection, I was to IMMEDIATELY call the Hematology Fellow on call so I could be readmitted for emergency antibiotics. Remember, the whole purpose of chemo is to kill fast growing cells, which include white blood cells. So after a week or so of chemo my white count was in the negative range.
I had no way to fight infections. Yet, I was going home to a place apparently filled with bugs that would give me infections. And if I got an infection, I could die immediately. And I was 30 minutes away from the hospital if any one or all of those bugs gave me a nasty life-threatening infection.
While hearing all this and taking it in, I asked, “Wouldn’t it be better to just stay in the hospital rather than go home?”
The doctor told me, “Oh no, you’re much more likely to get an infection in the hospital. Home is safer.”
Home is a place I could die within a few hours of most everything, and it’s safer than the hospital?
This is the crazy backwards nonsensical-land leukemia patients find themselves.
History #9 – treatment – induction – first hospitalization – last week Dec 2001 – Side effects: be afraid! Be very afraid!February 3, 2007 at 6:53 am | Posted in APML, chemo side effects, chemotherapy, Diagnosis and treatment history, My initial treatment -- induction, Stanford Hospital | Leave a comment
So, in the first few days since beginning treatment, I had a pic line inserted, and began getting chemotherapy through it. I was also beginning to take ATRA, the small pills that make the difference in the good prognosis for my subtype of leukemia. And they had begun the process of getting me ready for the next challenges – the side effects of these treatments that would save my life.
As I mentioned, the only possible side effect of ATRA was a doozy – some people died initially while taking ATRA because of reaction to it. To have reactions not only would have been potentially lethal, but it would have required (if I survived) other forms of treatment. So they watched me closely for headaches, the initial sign of impending toxicity. I got asked it a lot. Very fortunately, I never did get the headaches.
But the side effects from the chemo were a different story entirely. You were guaranteed to get many if not all of them, and I spent much of the first few days of hospitalization getting prepared for them. First and foremost, because chemo wipes out your white blood cells you’re pretty much defenseless against infection. This would be true not for just this hospitalization, but for most of the first few months of 2002.
This caused numerous challenges. First, I had to be in an isolation room, on the hematology ward, which had all isolation rooms. Not the complete very strict isolation that bone marrow transplants have, but with a few restrictions to avoid infectious pathogens. You couldn’t have plants or flowers in the room (to avoid the contaminants that are in the dirt), and the diet couldn’t allow for any fresh food (once again to avoid possible contaminants). And no cheese or yogurt. So the food was all processed and/or canned. These restrictions would be worse when I went home, as you’ll see later.
The other problem with chemo, along with the chance of infection, was the effect it had on the mouth and the rest of the digestive system. A little biology is in order here. What chemo does is kill fast growing cells all over the body. The intent is to kill the bone marrow that produces blood cells, with the hope that what grows back is healthy bone marrow. But it kills other fast growing cells in the body beyond those. One that is seen in a lot of chemo patients is the loss of hair. Hair follicles have very fast growing cells, so when they die the hair falls out.
But the other group of cells that grow fast are in the digestive system. All of your digestive system – from the mouth, the throat, the stomach, the intestines, the colon, the rectum, everything – have fast growing cells. So, the chemo affects them as well. You may have heard of the vomiting and nausea that chemotherapy patients have. This is why.
For the initial purposes, though, the mouth was the biggest concern. From what they told me, mouth sores are very common, and pose a great challenge. Think of it – if you brush your teeth with a stiff brush, you sometimes have gums that bleed. This not a good time for patients who have a bleeding disorder to have bleeding gums. Also, during the time of chemo the ability to fight infection is gone, so this is a very quick and easy entry point for germs to get in the body that could kill. So, they had patients immediately get into the habit of good oral care that could be done throughout chemotherapy, using special foam brushes, special liquids in place of toothpaste, and special “swish and swallow” fluids to kill germs and other stuff in the mouth.
So, they had me begin to do oral care like that four times a day, and to be rigorous and diligent. They said good habits formed before any sores or other problems start solve problems later. Another thing they did was rather interesting. There was one really nice nurses aide who came in one day with a head shaver. She made the offer of shaving the head at that time. I was still a week or so away from hair loss from the chemo, but this made sense – instead of waiting for the hair to fall out, to look in the mirror each day to see if it was still there, and dreading the day it was gone, cutting the hair ahead of time gave me control over the situation. If I were going to have to lose my hair, I would rather do it on my own accord. It was quite empowering.
Still, even with a shaved head, frequent oral care, and processed foods, I felt fine. But all of this preparation was an omen of things to come. And I waited.
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.
Around the time of the second attempt, the attending hematologist, Beth Martin, a very bright young blond woman, came back in. She had the results of the initial blood test. Now came the time I found out what was to happen with my life, or how much I had left.
You may recall in the previous posts, the night before, when I was first told about my diagnosis without knowing the prognosis, I was lost, despondent, and out of hope. Fortunately by not being a morning person, by this time all those emotions weren’t really registering. Add to that the experiences of the failed bone marrow biopsy attempts, and thoughts of prognosis and outcomes weren’t as foremost in my mind.
But now Dr. Martin came back in to tell me what had been found. And she was happy.
While it might seem odd to be upbeat in telling someone they have leukemia, Dr. Martin told me that morning that I have the kind of leukemia that they hope people have. She said there was a treatment for the subtype I have (APML) which makes this subtype much more survivable than other types of similar types of mylogenous leukemia.
She said that for six weeks I would be treated in a phase called “induction.” In that, I would have chemotherapy to kill the bone marrow, and take a pill, called all-trans retinoic acid, or ATRA. ATRA had been found to help healthy bone marrow grow back after the chemotherapy had done its job.
Specifically with regards to prognosis, she said that if I could make it through the next six weeks of induction, I would have an 80% chance of making it to 5 years disease free. The reason why the 20% figure was discussed was, mostly because of side effects of ATRA. For some reason certain patients would have a reaction in the first few days of taking it. A few others, usually older patients, have difficulty surviving the initial chemotherapy, which could be pretty harsh.
If I made it through the upcoming six weeks of induction and went into remission, then I would go into the next phase of treatment, called consolidation, where less strong chemotherapy will be provided for four courses through April. Then I should go into complete remission. If this all progressed without relapse, then I could likely resume a normal life by the summer.
Terrific news. But in the context of that moment it likely didn’t register like it should have. I did have to have a painful bone marrow biopsy, after all. And I did have to go through those six weeks of treatment.
But, little did I know that I was saved through many trials and tribulations that other blood cancer patients have to go through. While there was the possibility of relapse, the chances were good. And if I were to relapse, or have a reaction to the ATRA, then there was yet another experimental treatment that could be done before a bone marrow transplant. And for those of you who don’t know, bone marrow transplants are a much detailed and dangerous procedure, with the need for weeks of strict isolation. Basically, I didn’t know how good I had it.
I didn’t know, because not long after, Dr. Martin and the Fellow came in to yet again attempt the bone marrow transplant. To make a long story shorter (that I don’t remember that well anyway), the had to try three more times before they were able to aspirate bone marrow on the fifth try. Each time they had to give me stronger medication to ease the pain ahead of time (Demerol injections, etc.) and each time it was too painful to continue. The final time they had to put me in the hospital (which was to occur anyway, since treatment would start immediately) and give me IV morphine by drip to do the biopsy in a sedated state.
The last time was nice. I didn’t remember that one.
And it wouldn’t be that last time in my months of recovery that a morphine IV drip was used or enjoyed.
Early that morning we arrived at the Hematology Clinic for definitive diagnosis of the type of leukemia and to begin initial treatment.
For some reason I can’t recall now, Sam took me to the hospital and left. I can’t recall if he was working days, or he had to sleep for work. But my friend Susie came, and stayed with me that first day.
And it was an interesting day, to say the least. To diagnose the kind of leukemia, they were going to do two tests – one withdrawing blood, and another through bone marrow biopsy. Some of the blood work they could analyze here; other tests would have to be sent over to the University of New Mexico (why there, not really sure to this day) for special chromosomal analysis. They could tell with certainty, however, with the blood test that could be done that morning. So they took blood and began that.
The other test they attempted that morning was a bone marrow biopsy. For those who don’t know, a bone marrow biopsy takes a sample of bone marrow from the hip for analysis. To get marrow from the bone, they use a long needle, shove it through the hip bone (which is fairly close to the skin) and aspirate with a syringe. Sounds simple, right?
The staff there told me that while a little painful, it was more of a more intense quick bee sting. So for pain medication, they gave me a lollipop with medication designed for children, saying that would be all I needed. So, after I’d finished it, the Hematology Fellow came in and attempted to do the aspiration.
What we came to find out was that in my type of leukemia, the marrow produces large numbers of immature cells, multiple times more than is normal. And many of them were in the marrow, making it thicker than normal, and more than could be aspirated. So, the Fellow had difficulty.
Let me expand on that – the Fellow had a LOT of difficulty. While it did hurt some when the needle first went through, that was nothing like what came next. When the Fellow couldn’t aspirate, he would push the needle in further, sort of digging around until he thought he might be able to aspirate, and tried again. He did this several times. It was, uhm, quite painful with all that manipulation, as you might imagine. So not to long after a first attempt the Fellow stopped.
He ordered some type of pill (I think a Valium or something) and we tried again. Same result. We would have to go even stronger.
To be continued…..
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.