My Battle with Leukemia
Why I created this web page: The purpose of this page is to describe my personal experience fighting leukemia. In particular Acute Myeloid Leukemia (AML), sub type M-4. When I contracted this disease I didn't think to search the internet to see what others have gone through and what happened to them. There also were things I was experiencing after duing and after treatment, e.g. thoughts, emotions, etc, that was nothing like I expected and thus thought that something was wrong with me. Nobody seems to have mention a lot of it in all that I've heard about Leukemia. But when I opened up to others who have leukemia it turned out that almost all of them experienced exactly the same thing, much to my surprise! This page is my attempt to describe my entire experience, to date, so that someone who has leukemia can understand what might be in store for them. The most important part is that what they will go through probably is not as bad as they imagine it will be!
You'll note that I joke a lot in the following story. But that's how I dealt with it all so that's how I'm choosing to describe it. I still joke about it. But that's just me. But I think it's important to maintain one's sense of humour. It's a strong mechanism for fighting cancer.
Please note: This is just info I've gathered. I'm not a doctor! This page was not writte by a doctor. It's not information that has beent collected by a doctor. It is information that, personally, have gathered during the time period from the time I I was diagnosed to the present. I've tried to be as accurate as possible and the appropriate links to reliable referances are given.
What is Leukemia?: Leukemia is a form of cancer. In my case I have AML so that's the definition I'll elaborate on. As defined by the Dana-Farber Cancer Institute
Adult acute myeloid leukemia (AML) is a disease in which cancer (malignant) cells are found in the blood and bone marrow. AML is also called acute nonlymphocytic leukemia or ANLL. The bone marrow is the spongy tissue inside the large bones in the body. The bone marrow makes red blood cells (which carry oxygen and other materials to all tissues of the body), white blood cells (which fight infection), and platelets (which make the blood clot).
Normally, the bone marrow makes cells called blasts that develop (mature) into several different types of blood cells that have specific jobs to do in the body. AML affects the blasts that are developing into white blood cells called granulocytes. In AML, the blasts do not mature and become too numerous. These immature blast cells are then found in the blood and the bone marrow.
There are several types of Leukemia. For other types see Dana-Faber for a list of the various types and their definitions. There are four Major Types of Leukemia (there are also sub types). They are
Overall Five-Year Survival rate: AML is a very deadly form of cancer. The first thing I wanted to know when I heard I had AML is What are my odds? I imagine that's the first thing that goes through everyone's mind when they hear this kind of news. However the answer one may find doesn't always reflect what will happen.
The nature of probability: Survival rates are given in percentages. Probability refers to the average behaviour of a large group of of identically prepared experiments (i.e. when all other things are equal). For example: If I flip a fare coin a large number of times then about half of then will come up heads. Thus it is said that the probability of the coing comming up heads is 0.5, or 50%. However one could toss a coin 20 times and have it come up tails each time. So the nature of what probability means must be kept in mind. Simply put: The coin will come up either heads or tails. Similarly I will or will not survive AML. Only God knows for sure!
Use caution! First off it's rarely the case that all other things are equal. From what my doctors have explained to me and from invesigation into the data - When looking into survival rates one haas to use caution. One reason is that the meaning of statistics given aren't always given where the stats are. Over all stats don't tell you much in that they don't take into account the individualality of the patient. The following is a partial list (i.e. there may be more) of some variables to consider for for AML. From Harvard Prilgrim Health Care
Now that I've said that it's time to go onto the actual Overall Five-Year Survival rates: As an example: Consider the information I first saw regarding survival rates. I found this information on the 5 year survival rates for Leukemia in the Fact Guide (gives old stats) published by the Leukemia and Lymphoma Society (LLS)
The overall five-year survival rates listed there are
I'm not sure that I would have wanted to know this information when I was in treatment. 14% for AML.? Yow! But what I do know is that I wasn't too happy that I asked for it and nobody gave it to me. While people might have withheld this info so that I wouldn't freak out it had the effect of me now not fully trusting anyone. It's for this reason that I mention it.
Please note: The above figures have changed since these are figures given in the 2001 Fact Guide puplished by the LLS. Figures are gathered over a period of years and current figures may not reflect current survival rates. The following stats were recently updated at the LLS (recent stats). As of Sept. 2002 they are listed here.
The overall five-year survival rate has tripled in the past 40 years for patients with leukemia. In 1960, the overall five-year survival rate was 14 percent, by the 1970s it had reached 35 percent, and now the overall five-year survival rate is 46 percent.
During 1992-1998, the relative survival rates were:
- Acute lymphocytic leukemia (ALL): 63.5%; 85 % for children
- Chronic lymphocytic leukemia (CLL): 73 %
- Acute myelogenous leukemia (AML): 19 %; 46 % for children
- Chronic myelogenous leukemia (CML): 34.5 %
Notice that when I actually was in treatment the fact guide I had access to gave 14%. However the actual stats which applied to me gave 19%! That's a 5% difference!!
For more information from a patients perspectice vistit the Discussion Boards at the Leukemia & Lymphoma Society's web site.
Life before Leukemia: During the year previous to June 2000 was without question the worst year of my life to that date. Not only was I unemployed but had sever financial problems because of it. Not to mention my mother being in poor health. I had finally gotten a job at a Boston insurance company testing software. I was extremely tired all the time at this job. I had thought it was because the work was so boring. I was having a hard time because of this catching up to speed. I also called in sick soo after I started and even got sick at work. My boss had thought I was slacking off and since there was a deadline comming up he decided to lay it on the line: Get up to speed or be terminate. I knew I couldn't perfom what they wanted in this amount of time so I felt that I had no choice but to quit. At least they'd have time to find someone who could do what they wanted. Now quiting that job was one of the hardest things I had to do but I knew it as the best decision in the end. Plus I didn't really feek I could do the job they wanted feeling as tired all the time as I was. Later on I fortunately got a call from a place I was dying to get into, and I'd be able to work in my field again.
First Symptoms - June 2000: Ever have a sore throat? Well most of us can certainly agree that the average person doesn't go to see a doctor because ot it. We tough it out and that's that. No big deal right? However if that sore throat gets really bad then we might ask ourselves Do I have strep throat? Well this is one story which began with a sore throat. In this one case it got really bad. But this I mean that I could no longer swallow. I couldn't eat much at that point and what I could eat would't stay down.
Tests: So after a day or two at this I decided to listen to my mother's suggestion to go to see a doctor. The doc took some blood and took a look at my throat which looked a bit bad. The doc swabbed it and then had it checked. Meanwhile I sat in the waiting room for the results. The doc called me back in and told me that the good newsis that I didn't have strep. The bad news is that my white count is at a toxic level. Now from what I've learned the white blood cell count is about 5,000. She tells me that mine is close to 40,000 (38,000 to be exact). Wow! She tells me that this can induicate an infection. She wanted to make me stay in the hospital for observation but I really wasn't in the mood. They gave me a shot of anti-biotics and sent me home with instructions to see my general practitioner as soon as possible. So I went home. During the following days I notice that I had a wound on my leg that wasn't healing. Strange!
I then went to my regular doc and they took more blood (Ouch! Darn needles!). The white count had risen. He gave me more anti-biotics and sent me home and scheduled me for a bone marrow biopsy with an oncologist. I never really knew what an oncologist was before and I didn't see fit to ask .... more denial?. Now I had heard that these were painful but I had concluded that since I'm not really that sick then it must be a different kind of bone marrow biopsy. Little did I know! Well in the mean time I went home and got some rest. I recall waking up one morning and noticing that I had something chewy in my mouth. I spit it into the waste basket in the dark so I never really saw it. But when I looked in the mirror I saw that my lips were a tad brown. I opened my mouth and it was full of blood. I thought to myself Gee. That's odd. Hmm! but that was about it. This is called denial folks. Anybody else would be rushing to the hospital. Not I. Well I went and had that biopsy the following day. Oh my God! That was the most painful thing I've ever experienced in my entire life! They also took blood that night. They then sent me home. Well the next day was pretty good! My throat was better and I felt kind of okay except that I felt kind of draggy (for lack of a better word) I had the interview with that place I wanted to work. The interview went pretty good too. There were two interviews: Latter on I found out that I was over qualified one and underqualified for the other. On the way home I thought maybe I'd blow off the docs since I was feeling better, although someone weird! I bought a granny smith apple on the way home and took bite. Yow! Pain! Seems my gums were swollen and painful. Weird.
Diagnosis: I finally got home and was exhausted. I had been waiting all that day to find out the results of the biopsy. That night the oncologist called and we chatted a bit .... asking me about the interview etc ... It sounded like he was stalling. He then explained the results which included some talk of abnormalies which really didn't sound good. I then said Ya ... and ..? That is when I heard the following You have acute leukemia.
Now this may sound funny but I thought to myself There must be different kinds of leukemias since I can't have the bad kind (well not in so many words but a general feeling). A silence .... I then said Okay ..... and ...? He then explained that I he was recommending that I go to the Dana Farber Cancer Institute the following day (I live about 35 miles north of it). I would then have to have yet another biopsy .... Ahhhhhh! ..... . I'd then be admittend and go through chemotherapy and spend about four to six weeks in the hospital to start with.
Telling the Family: Well my mother,. who was 80 at the time, happened to be in the room watching me on the phone so I was careful not to say too much because if she heard what I had before I had a chance to get off the phone then there was little chance I'd be able to listen to the oncologist after that. So I finished talking to him and hung up the phone. I paced back and forth trying to figure out how exaclty to tell my mother this. To really appreciate this situation you have to understand that her brother was diagnose with exactly the same thing when he was 13 (circa 1936). He came home from the shcool not feeling well and died a few weeks later. Now I was pretty ignorant about leukemia at this point. All I knew what that my uncle died a pretty nasty death of it and I assume there was no cure. So at this point I thought I had only a two months, at the outside, to live. I can tell you this: That is not a pleasant thought! After some thought I realized that there was one and only one way that I can tell her this. And that was to say I have leukemia. It was a very hard thing to verbalize even though its quite a simple statement. Speaking it makes it more real. Obviously my mother didn't take this well. But she took it much better than I had ever imagined that she could. After she absorbed this she realized that this is a different day and age then when her brother had it. I had to tell someone. Seemed the only way to comfort myself and to absorb it. I then called my brother. As the words came out of my mouth it was then I broke down in tears for a moment. I hung up and called a few friends and let them know. My sister then called me. She asked me if I needed a ride to Dana-Farber and I of course did. She then said she'd look on the internet to find out more information on this. After a bit she called back and told me that If you're going to get cancer then this is the kind to get or somethikng of that nature (don't recall 100% exactly what she said). But I was rather surprised at that comment. At this point I didn't even know that leukemia is a form of cancer. So when I got off the phone and told my mother about this we were able to relax a bit. My mother wasn't as worried after hear this news.
Absorbing it all: At this point I had to start the process of absorbing this new tid bit of information. It was certainly a large possibility at this point that I wouldn't live more than a few months. The obvious question then come to mind What did I do with my life? I wasn't ready to die! Sleeping that night was a total nightmare. Especially since I was having nightmare in those few moments that I actually was able to sleep. I was halucinating as well as sweating up a storm (which is a common experience with leukemia). My shirt was drenched around the collar the next morning.
To the Hospital: Morning came and I packed my bag for this 4-6 week stay. I went through several tries at this. One does one pack for a stay which may be the last place one stays??? Well I figure that I'd have plenty of time to read .. yeah! I'm a big 'reader"
so a I packed a few books, had several tries at that too since I couldn't readily decide what books to pack. My sister came and picked me up. We made a few stops here and there. My sisted bought me a calling card so I could keep in touch with my mother, family and friends. We then stoped at Dunkin Doughnuts so that I could get something to drink. I went in, saw the long line, turned around and left. This was one morning I wasn't patient enough to wait in that line! And I probably couldn't hold down anything anyway. So on to Boston! In my mind I had just about 30-60 minutes to live in denial. Hmmm ... The oncologist did say that I was going for a second opinion .. Maybe he made a mistake!!! I loved that part. It was a short time during all of this where I could truly pretend that I didn't have this disease. But I was dreading this other bone marrow biopsy with every fiber of my existance.
Dana-Farber: When we arrived at Dana-Farber there was the ole waiting for the doc routine. First off - Blood draw! Oy! More needles??? Noooo. Then then started to draw - I've never seen so many tubes of blood taken from one arm at one time. There had to be over thirteen of them! Are ou leaving some for me? We finally got into the office and the question/answer period started. He first told me that I do have leukemia - no doubt of that. He told me that I will have to have chemo. He told me that I if I really truely wanted to I could go home but I've have to be back the day after at the latest. Well I didn't want to put my sister out anymore than I had already since she'd have to come back another day. There really no good reason for me to do this. Now the good news! The doc then told me that there's an 80% chance that I'll go right into remission! Wonderful! I then relaxed a tad. I imagine my sister did too at this point. Whew! A bit of light at the end of this tunnel. Okay! Now for the another bone marrow biopsy. I then proceeded to beg the doc Please! Give me as much drugs as possible Lots and lots of drugs! They were kind enough to oblige. Two shots of demerol. Ahhhh! Nice! That was the first I've been relaxed in the last two days! Then biopsy wasn't as bad as the first. It was doable.
The Start of the Hospital Stay: Again, the rest is a bit fuzzy. I recall going to my room at that point. This was in the Brigham and Women's Hospital, a partner hospital of Dana-Farber right across the street. I met the gentleman who was my roomate for the next few days. Nice guy! Helped me absorb it all a bit more. He gave me some hope. Wherever you are roomy - Thank you! They then started with the IV thind. Another needle! I was informed that I'd have to go to surgery in a day or so. They were going to pu a Hickman Line in. This was a tube runnnig directly into a large artery outside my heart through which they would put all the chemo and other drugs. This is done instead of a inserting a ton of IV needles all over me. I have to tell you that I was looking forward to this. I happen to have fun with the idea that they're going to put my udner anesthesia. It's strangely fun to try to resist not going to sleep. Yeah. A bit weird - I know. But all went smooth.
Induction Chemotherapy: Then soon after this the chemo started. This chemo is intended to put the patient into remission. It's called High does chemotherapy because they give you as much as they can without killing you. And this chemo is basically poison - kills the cancer while not killing the patient. The chemo was a drug called Ara-C and they gave it through the Hickman line 24 hours a day for 7 days. I wasn't looking forward to this to say the least. One hears stories about this. Nausea, hair falling out etc. But surprisingly there wasn't any nausea unless I tried to eat! Well that was a sort of nice surprise. They gave me medication to prevent it. However that didn't mean at all that I wasn't starving to death! I was sooo hungry all the time. In fact one day when my cousin called, which he did every single day, he said Pete! Do you realise that 80% of the time we talk its about food? at which point I recall laughing a bit! Then there was the fevers and sleepless nights and one time I got the chills so bad that I was shaking like a leaf. Violently in fact. Then there was the time I got a temp of 104 F. They proceeded to then pack me in ice. I wasn't aware of the fact that 104 F was a high temperature. I was still worried. Especially due to the fact that when I asked the question What are the odds that I'll die? nobody would answer! I didn't trust people 100% due to that. I figured from this experience that if they'll keep this info from me that they might keep other info from me. For this reason I will not fluff over anything I've experienced due to the fact that it might cause distrust. A bad thing. I met my Leukemia Social Worker during this period of time .. I think it was during this time ... again, it's all bit fuzzy! This woman is truly a woderful lady and made my stay much more tolerable.
Visits from Friends and Relatives: Well I thought I'd been seeing old friends when this happend. I had the notion that the friends I don't see much of are busy but will be there when the chips are down. Oh! How wrong I was. Cancer is a good way to see who your friends are. There was one person, my friend's dad, who called a few times which I've always appreciated. One friend that I've known since I was young (~ 8 yo?) came to see me every week. And he has a wife and child so it was an effort for him. And I'll never forget that. Even brought me home made iced tea that I requested. Too bad I couldn't hold it down. And he also brought a few VCR tapes with Star Trek: The Next Generation. Cool! My favorite program. I must have watched those a gazillion times that month. My sister and brothers came often. And my friend Edwin and his lovely wife Carla came to see me. I wasn't even expecting them because they're pretty busy people. But sure enough there he was! It was reall nice to see them. Especially in the wake of the dissapointment I had just experienced with my friends. I had been assisting Edwin with a new text he and his colleague John Wheeler had just published. It was pretty cool! He opened it up and there it was. My name in the acknowledgements and in the glossary! The text is called Exploring Black Holes. Some portions are available for download from this web site. I also had other friends visit that I hadn't seen in years and haven't see since. I suppose they have no idea whether I'm dead or alive. I'm told that it's well documented that there is a lot of avoidance of people who are sick, and the sicker the more avoidance. There were times duiong the chemo that I was too drugged up to recall much though. I recall bits and peices as time goes on.
Eating: I literally didn't eat anything that week. The following three weeks I barely ate anything. A grape or two here and there. But basically one can say - nothing! I had some ginger ale during chemo. But that came up pretty quick. I couldn't take that much nausea so I thought it best simply to refrain from eating. There were times there were blood would come up too. But not often and not for long. And the hospital food is probably the worst there is in this particular hospital. But there are a few menus to choose from. The hospital's menu (Ahhhhhh!) and the cafe menu (not too bad!). I tried it here and there but simply couldn't hold it down. So the hell with it. The only way to avoid nausea and the vomiting which followed was to avoid food as much as possible. The drugs made sure I wasn't sick. But I was still hungry as ever!
In Remission: After this first week when the chemo ended there was yet another bone marrow biopsy (BMB). Oy! This time there was a new doctor doing it. He was a BMB virgin at the time. I was his first! (I could have sworn I heard an Uh oh! but let's not forget about the amount of drugs I had in me). And yup! I was in remission! Yay!
Bye bye Hair: After about a week of being off chemo I started to see hair all over my pillow and blankets. I took a shower and washed my hair to get rid of the excess. However when I rinsed off my head and looked in my hands I had two hands full of hair (Note: One looses hair all over, not just on the head). I decided not to shower after that. But after several more days of hair all over the place and getting a bit raunchy from not showering I decided to have it cut. But I chose to have a crew cut. It wasn't as bad as I had imagined it. I wish I did that from the start and avoided all the agony of trying to hold onto it.
Recovering from the Chemo: Then starts the recovery period. I'm told that I looked like hell. I had this growth on my lip, which. I'm told, was a result of my bodies inability to fight germs. That was kind of painful. I had black and blue marks on my body due to a low platelet count. And as it turns out I'm was alergic to penacilin which is weird because several years earlier I was on penacilin for a case of chicken pox I had. No effects then. But this time it gave me a red rash all over my body - head to toe! Now starts the boredom. Nothing to do all day long all week long. I would get my hands on a computer after the first week since I was able to leave my room and wander around a bit. But in doing so I had to wear a damn mask! Breathing with those are a pain because its rather stifling. But I'd go to the Blum Resource Room in the hospital and use e-mail and visit an online physics forum I was fond of posting at. It wasn't a pleasant experience since such forums never are. But it was a distraction.
Visitors: When times get tough you find out who your real friends are. My family was right there for me. I was very moved by this and will never truely be able to express this to them. One friend I had known since I was very young came to visit at least once a week. And note that he has a wife and young child and he still came to see me. I also had a few physics friends come visit me. These are friends I've made either from pursuing a technical problem or working with them. I also had a visit from two old college profs and another friend. Besides my sister and her family, my next older brother and his wife came to visit. They even sat with my while I was waiting for surgery. My oldest brother and his wife came to vist too. So all in all my family was there for me and that was very imporant. There were things which needed to be taken care of which I was in no condition to do for myself. My social worker and my family were great at this!
Beeep beep beep beep ....: The IV I had was regulated by some damn machine which would get a bit messed up everyonce in a while. Then there is the inevitable warning sound .... beep ... beep ... beep ... beep ..... Several weeks of this thing going off every so many hours can really get on ones nerves! You then have to buzz the nurse who has to come in an fix it. After some time I figured out that all I had to do to shut this damn thing up was to push a button on it. But the nurses did not like that! But this seemingly small thing can get on one's nerves after a while. It's like a Chinese water torture .... beep ... beep ... beep ... beep ....
Going Home: Then came the time to go home. My social worker warned me that I could be back very soon if I got sick ad it was more likely to happen then not! But it was sure nice to get out! Mind you I couldn't go outside for an entire month. I really hadn't eaten in an entire month. But the day when they told me I could go home I left my room and went outside buying an apple in the way. Amazingly enough I could eat the apple and hold it down. I can't tell you how great that tasted. Then I stepped outside into the gorgeous weather. First thing I smelled was a nasty cigarrette! Yuk! But the I walked down the sidewalk a bit and enjoyed a nice walk around the building. I was pretty weak at this point. But wow. It was a whole new world! After a few phone calls I contacted my family and my brother came and picked me up. I went to my sister's house at first. This was the best decision for me at this time. She had given me some steak tips and O'boy were they good! I could finally eat. Next morning I got dressed. I actually fell over when I was putting my pants on because I was so weak. It was rather funny. I was evern laughing at the situation. I went for a walk which was nice. A bit wobbly but nice. I put my shorts on later that day (or was it later that week?). I tried putting my spandex workout shorts on. Get this - they were baggy! Now that was a funny sit to see. I chose not to wear them. That night I was on the couch watching TV and felt my heart pounding like a tom tom. Very strongly too. It was very disturbing. They thought it was anxiety. But after many many many times of me bitching an moaning about this they finally gave me the full works of monitoring. I had a monitor whih I had to carry around with me. Turned out that I had a condition called Super Ventricular Tachycardia (SVT). Anyway ... I recall that trying to sleep that night was a horrible experience. During most of those first nights I just couldn't sleep. It was terrible. I hate insomnia.
Adjusting to it all: Time to try to forget some of this! Well the first thing I wanted to do was visit a friend of mine. I had my sister drop me off. All I did was sit on his porch and chat with him. No exertion whatsoever! And I was okay for quite a while. But then I had this feeling come over me. It was a very strange feeling. Never experienced anything like that before! I didn't even know how to describe it to my friend. It got worse and worse and worse. I had to go home at that point. The best I can describe it is to say that I felt wooshy. The second thing I wanted to do was hit the movies. I had heard the The Perfect Storm was in the theaters so I wanted to see it. So off we went. When we got there and parked it seemed like a thousand miles to the door! I was very weak still. So my friend was good enough to drop me closer to the door. The nurses at the hospital suggested that I wear that damn mask if I go into a closed space with lots of people like in a movie theater. But no way! Of course I had this fear of what would happend when I went out into public as skinny and bald as I was. But I wore a cap and nobody seemed to pay attetion. I guess I was a lot less important than I thought I was. We got our snacks (Yum! Junk food!) and grabbed some seats. Now I haven't seen this happen since the theater was built! But just my luck! The Jimmy Fund was there. The showed a trailer to raise some funds and guess what?? Yup! They were showing the very same place I had just gotten out of and was trying to forget. Showing children who were being treated for cancer. And they looed the same as I did, had the same plastic wrist bands etc. Oy! What is it with my run of luck! Well I felt that I'd better dig into my pockets at this point. The Jimmy Fund and Dana-Farber wasn't so much an abstract concept at that point. By the way. Children aren' the ony people who get Leukemia! Well the movie was fun and that's about as much as I recall from that first run of chemo.
Hickman Line Maintenance: The day after I got home I had to wait for a visiting nurse to come and bring the material to take care of my Hickman line and to show me how to flush the line out. She also had to change the dressing where the line went into my chest. I couldn't watch that. To freek'n wierd to look a a hose sewed into my chest. took me several months ot get used to it to the point where I could do it myself. Then onto flushing the line. I've never used a syringe before. She had to show me how to do it all. Yes. That means I had to do it to myself! The line requires flushing out. Otherwise they'll get clogged or whatever. I was supposed to fill the syringe and insert it into the line and inject it with some stuff called Heparin. Let me tell you something! Now mind you. The line is a few inches any from my heart. Squirting some stuff directly into your heart is a very weird thing to do! The 'line' is really tw olines in one. Each of which needs to be flushed. When I flushed one line I felt nothing (except for it feeling wierd). however when I flushed the other there was a cold sensation - like I was injecting ice water. I have no idea why! The next morning I had to do this all by my lonesome! I filled the syringe taking all the precautions like swabbing everything with an alcohol swab. I then stuck the syringe in and pushed - nothing! I pushed harder - nothing! I pushed even harder - Spash!! God dammit! I yelled (waking every body up I bet) Heparin all over the place. Scared the hell out of me. Very embarasing too. Turned out that I forgot to unlcamp the line (it has clamps which prevent fluid from flowing - I don't know why they're there since it would flow anyway, but ...). I unclamped it and all was well.
Weekly Visits to Dana-Farber: In between rounds of chemo I had to go back to Dana-Farber, every week, for blood tests. It was always nice to see my docs since they're pretty good guys! My main oncologist was a physics major at one time too so we had that in common. Sometimes I was okay and sometimes I'd need transfusions. Those were no fun. Pretty much just wicked boring! It might take a hour or so for blood or perhaps four hours to get enough saline. That happened one time. I was very dehydrated that day I guess. Doc told me to drink 8 glasses of fluid a day. I think he said 8 oz glasses but I'm not sure. Turned out that, yes, I was drinking 8 glasses, but it was twice as much as I needed to and believe me. It's not easy to drink that much. And no beer to boot! Yep. During this period from June to November 2000 I couldn't have a single beer - or any booze for that matter. Funny how that works huh? Just when you "need" it you can't have it. And of course there's human nature - Just when I can't have it is when I want it! But then after chemo I could finally have a beer! Yay!
However after this time, i.e. after I was off chemo for awhile, I really didn't drink much - I guess it was because I could?
Consolidation Chemotherapy: Three weeks later (and no troubles in the meantime) it was time to go back for more chemo. Well it wasn't as bad this time. I'd go in for a week and then have chemo every other day. It was okay I guess. I could watch TV, read, flirt with the pretty female doctors and nurses. Hey! I wasn't dead ya know!
The nurse I had this time around was very nice too. She even brought me a Hazlenut coffee (I was into the fancy-shmancy coffees then. Now? Not so much.) from good ole Dunkin Doughnut's! Yum! Boy-oh-boy that was good! The week went by slowly as usual.
Not too fast there bucko!: Well nothing every goes 100% perfectly right? First let me describe something: I bought a digital thermometer when all this started. You have to keep a constant vigilance on watching your health during chemo. And if you have a temperature over 100 F -> Right to the emergency room! But I got very lucky in this respect. I only got a hight temperature once. I went to the hospital emergency room in my town and they shipped me off to Dana-Faber again. Then too x-rays whcih revealed a spot my my lung. They didn't know what it was so they had to do a CT scan. But that takes time to schedule. Meanwhile what do you think went through my head? Yup! That's right - Oh no! Don't tell me that I have more cancer! And of course that worry won't go away until the CT scan .. whenever that happens! Well I got the results back and it was a mind touch of pneumonia! Whew! Finally. Something mild! They gave me anti-biotics and shipped me home. But I hate these stays. The boredom is killer! I guess that's why the following happend. One night I'm watching TV and I get a nose bleed. Damn! Ummm .... maybe it will stop by itself ... well ... maybe if a wait a little longer ... maybe ... maybe ... Folks! This is what is known as denial! Big time! I even went to sleep and waited the next day and so on. Finally I went to the hospital and got a transfusion. But that means back to Dana-Faber. Seems that only they had the facilities to give me the right blood since it has to be irradiated. When I got back home I finally noted that since I normally had a red pillow case that I might want to look at the actual pillow. Yup! You guessed it! There was a huge blood stain there. What an idiot I was! Now I have to by a new pillow!
Living with Leukemia: Well that's about it. There were the follow up bone marrow biopsies and the horror of thinking about them. There was 8 in all I think. No I just have blood tests every few months. And I bitch and moan to the good doctors at Dana-Farber about even that. I claim Doc! The chances of me coming out of remission now are kind a small. Less than 20% (as of Fall 2002). I don't really need to come in. If I start to bleed I'll buzz ya! And of course the talk me out of it being the consumate professionals they are. But it's dificult in the sense that I have a hard time both no thinking about it and keeping appointments. If there's no reason to worry they I see no reason to have it checked kind of attitude. There is always the though of it coming back. But the more I resolve the first though I had when I heard I had AML, i.e. when I thought What did I do with my life? the less it worries me.
Dealing With the Thoughts: One might think that it's best to simply not think about it. But of course that's easier said than done. Strangely enough the opposite was true. Since I was thinking about it so much I decided to saturate my thoughts with it. I went through all the permutations of what might happen. But it turned out that none of them really scared me that much. So after so many sleepless nights and depressing days of this eventually none of these thought bother me anymore.
Why I miss it: What? Miss it? How in the heck could anyone in their right mind miss any of this? I was missing it and not understanding why I was thinking like that. Well wouldn't you? Eventually I got up the nerve to tell this to my leukemia scocial worker. And much to my surprise it's not that uncommon! Well that was totally unexpected! She explained this to me as follows: When you get Leukemia you spend all your time and energy fighting it. It's a full time job so to speak. And you get to know the the people at the hospital pretty well. You have regular visits there and see the same people all the time. I really enjoyed chatting with the girls taking my blood. After so long we could talk about anything. And you'd be surprised about what we've talked about! Plus when I sat down and really thought about it I realized that during the chemo I was actively fighting the leukemia. Now I just hope it isn't there. I'm sure a lot of people, when they go intto remisison, think to themselves Do I have leukemia? Or do I not have leukemia but I'm in remisison. But if I'm simply in remission and it can come back then doesn't that mean I still have it? Or does that mean I 'can' still have it. Or maybe it means .... and so on and so forth.
Going back to work: Well here's the kicker! I've now been out of work for over two years. That obviously doesn't look good on a resume. Who knows what the HR people are thinking when they read that. And there is no way to know how people would respond when they find out that you have leukemia. I even had a friend, who was well educated mind you, who asked me Is it contagious? So I simply say that the gap is due to medical reasons. In my opinion there simply is no unique way to approach this problem. It all depends on who is reading the resume. Each person can have radically different views. One might think Well he can't be that reliable. What if he comes out of remisison next year when we're in crunch mode. Let's take a look at the other 300 resumes I have here. You can imagine different scenarios right?
Well that's about it. I finished this web page on Sept 26, 2002 and as of today I'm in remision, 2 years and 5 months after I was diagnosed and close to two years since I've been in remission.
Good luck all. I hope this was useful to you.
Pete