Subtitled: The irony that is steroids in chemo to the overweight; or, Medication given for the side effect of medication given for the side effect of medication given for, etc.
The last posts here in the history section were about my discharge from the hospital after developing severe systemic infections and almost dying, and being started on the antibiotic “amphoterrible,” or amphoteracin, and enduring the side effects of that. While at discharge they had stopped giving me the amphoterrible, I still had one of the most difficult side effects – fluid-filled legs, the size of pineapples, and accompanying weight gain.
The fluid retention really wasn’t from the antibiotic, but from some of the medications to lessen the other side effects of the antibiotic. As I mentioned in an earlier post, one of the major side effects of amphoterrible is really violent shakes and chills. I had that almost immediately on my first dose. So, to lessen that effect, when giving amphoterrible a whole slew of medications is given with it – IV fluids, pain medications, and others. Others they give are steroids. I was started on low doses, but they still had side effects of its own, in this case the fluid retention.
So, I was taking medication (steroids) to counteract the side effect (violent shakes) of the medication (amphoterrible) to counteract the side effect (systemic infections) of the medication (ATRA and other chemotherapy) for my leukemia (APML). Getting all this?
Of course, since I now had a new side effect from the steroids, the fluid retention and pineapple sized legs, I had to have more treatment, including, you guessed it more medication. I was started on diuretics.
Ready? I was now on:
- medication (diuretics)
- given to counteract the side effect (fluid retention) of
- medication (steroids)
- given to counteract the side effect (violent shakes) of
- medication (amphoterrible)
- given to counteract the side effect (systemic infections) of
- medication (ATRA and other chemotherapy)
- given to treat my leukemia (APML).
Truly, a case of cause and effect gone berserk.
I must admit, having water retention and weight gain as a side effect of having a form of cancer was, for me, oddly disappointing. I’ve been heavy on and off most of my life, going through Star Jones-like swinging periods of obesity to being mildly overweight to (very occasionally) a modicum of thinness. Easy to say, most of my life I’ve been mild to moderately overweight at a minimum. I’ve gone from being a lifetime member of Weight Watchers happily at goal weight to returning later, tail between legs, to attempt to get back to goal weight. I’ve considered myself someone who has a compulsive eating disorder (but having looked at super-sized families at theme parks I know I’m not alone in this). I have stopped and started and stopped running programs in the past so many times that I’ve probably already run enough to train for a marathon, quarter mile out of breath jogs at a time. But after a couple of months the lure of eating takes over, which gets me out of an exercising frame of mind into one of Cheetos on the couch. (This time I think I’m ok for the long haul with the TNT program.) To this day, I bristle when anybody calls me “Big Guy.” I know they don’t really mean anything by it, but it’s not a term of endearment to me. So when you see me and feel the need to call me that, consider yourself warned.
So, with that, some of my first thoughts after first being diagnosed with leukemia on that night before Christmas 2001 might not seem as odd. That night, one bit of comfort was that, assuming I lived, I’d become a Nicole Richie-esque thin cancer patient, and perhaps I could keep it off. And if I didn’t make it, I’d be thin on the way out.
Morbid? Sure. But that night was a morbid kind of night overall.
That’s why having fluid retention was such an irony. As my brother-in-law Rex said, “Leave it to me to find a way to gain weight going through chemotherapy.” I now know that giving steroids to chemo patients and their side effects are fairly standard, but not knowing that at the time, it was a bit of an ironic disappointment.
History #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 #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.