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

February 19, 2007 at 6:17 am | Posted in APML, chemo side effects, Diagnosis and treatment history, My initial treatment -- induction, Sam Cantin, Stanford Hospital, Susie Engard | 2 Comments

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

February 3, 2007 at 7:01 am | Posted in AIG, chemo side effects, My initial treatment -- induction, Sam Cantin, Susie Engard | Leave a comment

When I’ve spoken to groups for the Leukemia & Lymphoma Society over the years, I sometimes started with a question – “What were you doing Christmas 2001?” My answer was, in Stanford Hospital getting treatment that would save my life. (A good opener – very dramatic and catchy.)

In the days before Christmas 2001, I had the preparations for chemo made as described above, but felt good. The mental attitude was another thing. All of the preparations increased the fear of the unknown. Mouth sores? Infections? I wasn’t having headaches from the ATRA, but still worried about that. And although the prognosis was good, there was that 20% possibility of not making it to remission or surviving. It was all still there, looming. And all one could do was to prepare, and think about it.

One thing that really helped was my connection to my work. At the time I was working as a healthcare consultant for a medical malpractice insurer, and my job was to travel to places all over the western US, including Alaska and Hawaii. I really enjoyed the travel, and the content of the work. I was able to do education and write professionally for work newsletters and other things. At the time of my illness, I had been working on a risk management newsletter for long-term care. I had an outline, and all the content laid out in bullet points. So I had asked to have my laptop brought to the hospital, and to keep my mind off the uncertainty I worked some on the publication. I also sent emails to my co-workers, not just about finishing that publication, but to tell them about how I was doing.

My connection to the people of my work was a godsend, too. I was always very open with what was going on, what was about to happen, and how I felt. I remember reading a story about a woman in the early years of treatment of breast cancer who went through treatment without telling anyone – most of the family, co-workers and friends – for a decade. She hid all the details of her illnesses, taking “vacations” when the symptoms and treatments got worse. Most never knew until just before she died.

I could never do that. I didn’t want to be private about this. There was something about telling others about what I was going through, and implicitly soliciting their thoughts and prayers, that I knew would help me. So I was emailing from the hospital room to not just work, but to old friends and all my family. Not long after admission, I started getting cards and calls from everyone. It really helped. Others started sending emails, just talking about normal routines and things that happened at work. It really really made a huge difference.

But I suppose the one thing that kept me sanest of all was Sam and Susie. One, or the other, or often both, had been there all the time those first few days. They were there through it all – the insertion of the pic line, the shaving of the head. And they kept me grounded – they worried about me, probably than I worried about me.

And probably the best thing they did for me was to make my Christmas and New Years of that holiday season as best it could be. They worked to find various kinds of foods I wanted, that I could eat. Sam made incredibly terrific homemade pecan pies – and he was smart enough to make enough for the staff, which made him very popular. I recall wanting pizza something fierce, which of course was off-limits (no cheese). Somehow they got some processed cheese and did something. I remember getting some kind of cheese at that time, and it was really great. They both decorated the room, and were there to help me make it through those times.

The best thing, though, was a gift Susie got me. I’ve mentioned it already in her own post honoring her, but it’s worth repeating here. She gave me a battery-operated candle, with a card on it that read, “To remind you there is light at the end of the tunnel.”

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

People who’ve supported me #3 – Susie

January 30, 2007 at 5:31 am | Posted in Susie Engard, Those who supported me during my recovery | Leave a comment

 

Another really really really important person who I have to honor for her support is Susie Engard.

Susie in Maine, October 2002

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I met Susie as a long time friend of Sam, but in just a very brief time after meeting her we became really good friends. Weshared a joy for hiking in the Bay Area hills, movies, and, of course, eating. Within a few months of moving to the area a typical weekend involved doing something with Susie.

But for purposes of my initial treatment and recovery, Susie was the one who was there that very first day at Stanford. She was there for most of those events of that day, including both the very good (the very good diagnosis and prognosis) and the very bad (the five, count ’em, five bone marrow biopsy attempts that first day). And during the subsequent hospitalizations, she would frequently come over in the morning after work (she was also working night shift as a nurse at that time). I was fortunate not to have much nausea and vomiting during my chemo — plenty of other problems, but not that. She was there for the only time I recall vomiting while in the hospital. (Hey, no one ever said it would all be glamorous.)

After those times, and through the outpatient chemotherapy, Susie was there, supportive. She also gave me the best Christmas gift I ever got, while hospitalized at Stanford with that initial treatment December 2001, when I was just about to embark on the difficult part of the treatment and recovery. It was a battery powered electric candle. On the card on it, she wrote, “To remind you there’s a light at the end of the tunnel.”

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Thanks for providing that light in all you do, Susie.

History #6 – Diagnosis – December 22, 2001 – Stanford – Biopsy

January 30, 2007 at 5:18 am | Posted in Diagnosis and treatment history, Initial diagnosis of APML, Stanford Hospital, Susie Engard | 1 Comment

 

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…..

 

 

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