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IMPORTANT DISCLAIMER: The purpose of this web site is simply to share information relating to my experience with APL. The information is not complete and this site does not guarantee the accuracy of any information contained here. Always consult with your physician about questions or concerns you have. Do not use the information on this site as a substitute for expert medical care or guidance. In a nut shell, use the information in this site wisely. Verify information with experts and find out what the true facts are! Don't blindly believe anything you read anywhere!
These pages were created in the Fall of 2000. The last update was Summer of 2012.
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Leukemia means having immature white blood cells in the circulation. Mature white blood cells function to destroy bacteria, remove dead or damaged cells, and signal other immune system cells to respond to foreign invaders. Immature white cells are non-functioning, and so the leukemic individual is vulnerable to infection.
The other cellular components of blood are the red blood cells and the platelets. The red blood cells (RBCs) transport oxygen and carbon dioxide between the lungs and body tissues. Platelets are fragments of cells in the marrow, and contain clotting factors (like fibrinogen) that plug vessels when they are torn to prevent excessive bleeding. In a leukemic individual, the red cells and platelets are often depressed, also, because of the way the marrow works. So, a person may be anemic and at a risk of bleeding excessively, too. Blood and/or platelet transfusions may be used to return these levels to normal. Low counts for red cells, white cells, and platelets are common symptoms when a person is first diagnosed with leukemia.
The bone marrow contains stem cells which produce all three cellular components of blood - the red cells, white cells, and platelets. Upon appropriate stimulation by growth factors, the stem cells reproduce and one of the two daughter cells will differentiate into one of the three categories of blood cells. The other of the daughter cells does not differentiate, thereby maintaining a constant supply of stem cells from which the blood cells can be made.
Click HERE to see a diagram of blood cell development in the bone marrow.
Neutrophils (primary infection fighters) are the main granulocyte.
Maturation of T cells actually occurs in the thymus, not in the bone marrow.
APL is a subtype of acute myelocytic leukemia (AML). 'Acute' refers to the rapid onset of symptoms. 'Myelocytic' refers to those cells that produce the granulocytes (neutrophils, eosinophils, and basophils), not the lymphocytes. My specific variant of APL is the M3 form. This was shown by cytogenetic testing that confirmed a translocation at chromosomes 15 and 17 (t15:17). This genetic abnormality produces a fused gene product that is non-functioning. The result is that the promyelocytes do not develop into mature granulocytes, hence the proliferation of immature cells (leukemia).
APL is fairly uncommon, especially in young people. Although there is no way to know the cause of my leukemia, my previous exposure to toxic chemicals (including chloromethylbenzene) as a graduate student is interesting to note. All of the bioreactive chemicals I studied are potential bone marrow toxins.
Tests on the bone marrow also showed another mutation, a deletion at chromosome 7 (7q-). This mutation is found in the bone marrow stem cells from which all of the blood cells are derived. Myelodysplastic syndrome is the term used to describe the effects of this mutation. Myelodysplastic syndrome may go undetected for months or years. The most common symptom is anemia. About 1/3 of cases lead to leukemia.
My treatment, so far, has been a chemical called all-trans retinoic acid (ATRA), also known as Vesanoid, tretinoin, or retinoin. Retinoic acid is a normal growth factor that stimulates the development of many cell and tissue types in the body, including the granulocytes of the bone marrow. So, I take retinoic acid to stimulate the maturation of the immature myeloid cells in my marrow. So far, it seems to be working! For a time, my CBCs fluctuated, and my doctor said this is probably due to the myelodysplastic syndrome. The myelodysplastic syndrome may continue to complicate my situation, but it will not alter our overall treatment plan.
ATRA has an excellent track record in getting patients into what is called an initial remission. However, it does not last and cannot be used by itself successfully, in terms of long-term survival. Chemotherapy is the necessary next step once the ATRA has established a normal bone marrow profile. I will undergo two rounds of induction (also called consolidation) chemotherapy each using two drugs called idarubicin and cytosine arabinoside. These drugs work together to kill cancerous cells. The dose will be such that the promyelocytes will be killed. The stem cells that produce the promyelocytes are somewhat resistant to the drugs, so they should not be killed. The stem cells should be left, then, to re-establish the blood cell lines after the promyelocytes have been destroyed by the chemotherapy. Two rounds of chemo are necessary to make sure all of the promyelocytes are removed.
This diagram of blood cell development shows the cut-off line for the chemo. Cells to the right of the line will be destroyed, cells to the left (the stem cells) will not. This means that for a time after the chemo is given, my red cell counts, white cell counts, and platelet counts will be very low. I will be at greatly increased risk of infection and free bleeding, and may be somewhat tired. This is why I'll be in the hospital! They will monitor me closely and can rapidly respond to any needs I may have. I will probably require blood transfusions to help out with the red cell population, and maybe a platelet transfusion, as well.
Because of the myelodysplastic syndrome, my length of remission after chemotherapy may not be as long as for someone who just had acute promyelocytic leukemia. The mutation that causes the myelodysplastic syndrome is in the stem cells, which are resistant to chemotherapy. So, the chances that I will relapse sooner rather than later are increased. The symptoms of myelodysplasia can be managed with transfusions, but the only cure is to have a bone marrow transplant.
If it is determined that I need a bone marrow transplant, I plan to go to the Fred Hutchison Cancer Research Center in Seattle, Washington, to have the procedure. This would require a two-month hospital stay, where they begin with a higher dose of chemotherapy, one that would kill all of the bone marrow cells, including the stem cells. Once the marrow cavities are emptied of their contents, I would receive a transfusion of someone else's marrow. That marrow would hopefully then regenerate the blood cell lines and I would be cured. The risks of bone marrow transplant are like those of other transplant patients - rejection of the new marrow, and infection or bleeding after the chemo. Potential marrow donors are screened extensively through blood testing to determine the best possible match. My age (30) makes me an excellent candidate for a transplant, should the need arise.
The warning signs started in the spring and early summer, but I didn't realize this until after I was diagnosed. I was tired a lot, and cold (symptoms of anemia). In the summer, it was worse. Even though I had been in the sun a little, I was pale. Almost any physical exertion made me short of breath. I thought I was out of shape and just needed to work harder! I started bruising easily and the bruises wouldn't go away. I began to hear my heart beat and blood flowing in my ears, sometimes in my whole head - I would later learn that this is also a symptom of anemia in young people.
In early July, 2000, I got an infection in my gums. When the pain got bad enough, I went to the dentist. He took x-rays and said my teeth were fine, and gave me an antibiotic (amoxicillin) for the gum infection. I took the antibiotic for 9 days, then broke out in a rash all over my body. I went to a general practice physician the next day and he said the rash looked like a reaction to the antibiotic. He said to stop taking it and the rash would probably go away. He asked if I had any other problems, and I mentioned the bruising and hearing my pulse in my ears. He told me to not eat or drink anything after midnight, and to come back the next morning and have blood drawn.
So, the next morning (July 18), I came in early to have the blood work done. I came home and took a nap and at lunchtime they called me back and asked how I felt. I told them I was a little tired, but OK. The nurse said I needed to go to the emergency room to have the blood work re-done. I asked why, and she said that the numbers were so low that they wanted the hospital to confirm them, or see if it might have been a mistake. Figuring it was a mistake, we thought we'd be there maybe 10 minutes. (Ha! Not so, it was 10 days!)
At the ER, the numbers were the same, all very low. Red cell counts (hematocrit, hemoglobin, etc.), white cell counts, and platelets were dangerously low, indicating that something was definitely wrong. They said I would be spending the night so they could run tests to find out what was wrong. They then took more blood and ran all sorts of tests - all came back negative. They did a CAT scan - no problems with any of the internal organs or lymph nodes. They even did a mammogram - all clear there. Finally, a bone marrow biopsy was performed - that was Wednesday, July 19. On Thursday, the doctor gave us the diagnosis - acute promyelocytic leukemia. After a couple of days of not knowing anything, it was a relief to finally know what it was. When you know what it is, you can deal with it. He said cytogenetic tests would confirm the diagnosis, that those were sent off to another lab and would take a week or so to get back, but that several specialists in his lab had looked at my slides and they all thought it was APL. He then told us what the treatment plan was - ATRA (retinoic acid) for 3-6 months, followed by 1 or 2 rounds of chemotherapy. He said in a year, I'd be in complete remission and back to my normal routine. Unfortunately, that was not the end of the story.
The cytogenetics came back a week later and confirmed the presence of the mutation for APL, as expected. But they also showed another mutation on a different chromosome - this one indicating a myelodysplastic syndrome. The myelodysplastic syndrome has probably been there a long time, maybe years. The symptom is usually anemia, and so, is often ignored. About 30% of myelodysplastic syndromes progress to an acute leukemia, as mine has done. This complicates my situation somewhat, but does not alter my overall treatment plan. The occasional fluctuations in my blood counts are probably due to the myelodysplastic syndrome - if it was just APL, my counts would be expected to rise gradually, not go up and down as they, at times, have. The CBC chart shows how my numbers have progressed since I entered the hospital the first time. Having the myelodysplastic syndrome (MDS) increases my chances of having to undergo a bone marrow transplant - it is currently the only way to cure someone of MDS.
July 18: The ER, the first day in the hospital, mammograms, CAT scans
July 19: Bone marrow biopsy
July 20: Finally, a diagnosis.
July 21: starting ATRA, talking to my boss
July 22: the Hickman triple lumen central line (venous) catheter - my new best friend
July 23-27: in the hospital, not sick!
July 28-August 1: home, sweet home
August 1-5: back in the hospital
August 6-Sept 11: home, figuring out the new pace
September 25: steroids
October 23: chemo starts next week
October 30: back in the joint
October 31: Halloween!
November 1: still trucking along
November 2: halfway home!
November 3: not having fun
November 7: There's no place like home
November 8: Holy cow!! White counts are bottomed out.
November 10: I can't believe I haven't gotten sick.
November 14: how quickly things change
November 24: This was rough.
November 29: I feel really good - a heck of a lot better than I did a week ago at this time!
December 30: Chemo, Round 2, the last of it, we hope
January 11, 2001: Dear Diary, Sorry I haven't written for so long.....
January 14: waiting, waiting, waiting
January 20: feeling more like myself again
January 26: at home, at last
March 20: GREAT NEWS!!!!!
October 30: addendum
February 28, 2002: update
February 4, 2003: an even better update
August, 2003: bone marrow still clean
March , 2004: double fun
June 19, 2004: They're here!!
June 26, 2012: Breast cancer - it ain't leukemia!
In the ER, I was very nervous. No one knew what was going on yet, and no one could/would speculate. I was surprised when they said I'd be staying overnight. Aside from having my tonsils removed at age 6, I had never been in the hospital - not for anything serious. Apprehension was high, and I kept waiting on someone to come in and say, 'Oh, we're sorry, we got your vials mixed up with someone else's - you're fine and free to go.' Deep down, though, I think I knew something wasn't right. I knew that it wasn't that I wasn't in shape, like I had told myself all summer. We just had to wait until they could figure it out, and until then, there was nothing I could do. It was a very helpless feeling. I was anxious, and afraid.
And, as if I couldn't be more afraid of needles, they're coming at me every other minute with one. Turns out I have bad veins, didn't know that. Makes this experience really fun. Now they want to put an IV in - just kill me now. How many different people are going to try to do this? How many different places on my arms are we going to try? At what point do we give up? Finally, they bring in someone who 'never misses'. Sweet heaven, it went in. Why didn't we start with them?! All IVs should be put in by someone who 'never misses'. Hello? Anyway, now that that's done, I'm off to a room.
My first room was in the maternity ward - I wondered if they were trying to tell me something. I had two main tests on this day. First, I had a mammogram done. No problem found there. I also had a CAT scan done from the head down to the abdomen. Those tests also came back negative. And in the middle of the night, they gave me my first two units of blood. This is so bizarre. I can't believe I'm here.
Day 2, more waiting. Torture, waiting is. We still don't know anything. Then, the bone marrow biopsy.
My doctor gave me morphine (for pain), phenergan (for nausea), and a local anesthetic before the biopsy was performed. The procedure was done in the hospital room, I was surprised for some reason. I guess I thought it would be done in a more sterile place, but not so. I'm flopped over on my stomach, and he starts pounding away at the top of the pelvic bone. In my dazed memory, it seems he's jumping up and down like a madman and I'm flying up and down in the air as he tries to dig marrow and pieces of new bone growth out of my lower back. I'm sure it wasn't as violent as I remember. Occasionally, I would feel pain and I would be quick to inform him of it, and he would move his needle to a different spot, and it would stop hurting. He dug around for a while, trying to find the bone spicules, which he never did, and so finally gave up.
For several days, I felt nothing from the area of the biopsy. Then, the dull pain arrived. I felt as if I'd been kicked in the backside, and that persisted for about a week and then gradually went away. Overall, no big deal. The worst part of the procedure was coming off of the morphine. I felt like a druggie - I don't know how people do drugs, if that's what it does to you. That was not fun at all. I felt anxious and paranoid and very disturbed. I didn't want anyone around and wanted to say ugly things to the people who were there. I didn't, and that made me feel worse for having to be polite when I didn't want to be. I guess I was 'tripping'! I kept saying for days afterward that I never wanted morphine again, and that I hoped there was something else he could give me if I ever had to have another biopsy again. [Now, I believe I'd rather take the morphine than chance that some other med might not kill the pain during the procedure. I'm more of a baby about pain than I am about tripping.]
Most of the day was spent waiting and wondering. Agonizing! Complete mental torture. Not knowing anything is certainly the worst. Finally, about 6:00 in the evening, the doctor arrived and said he was awaiting cytogenetic testing to confirm it, but that the slides from the biopsy seemed to indicate acute promyelocytic leukemia. Finally! A diagnosis. A name. Something to start dealing with. No tears. No big breakdown. A strange calmness. For a brief moment, anyway. It was strange hearing the words, though. I was writing everything down that he said, and hearing it again in my head. "Acute promyelocytic leukemia." Leukemia. I've heard of that. Acute, that means it came on fast. Promyelocytic, I'll have to look that up later. Unbelievable. Leukemia - when I was a kid I knew a girl who had that, and she's fine. I can't believe I'm sitting here and he's saying these things to me. This can't be real. A year. A year and I'll be fine. I can't teach? Are you kidding? I can do senior thesis - thank God. One on one is OK - classrooms and tons of people, getting worn down, not OK. OK, I guess, I'll deal with that later. A year out of my life. That's a long time, I can't believe this conversation. This is crazy. What am I going to say to my bosses? I can't believe this is happening. Treatment. This sounds good. Hard, no fun, but do-able. Chemo. Not lymphoid, that's good. This could certainly be worse. This is nuts. This cannot be happening.
A whirlwind of thoughts and emotions rampaged through my head as he talked. I can't believe I heard what he said - I wonder what I missed. I don't remember too much about what I felt after the doctor left, just general impressions. I didn't say much. Processing, I guess. What a blow! What a shock. Surreal. We sat on the bed. I don't remember what we said. I guess too much was flying through my mind. I remember wondering how in the world I was going to tell this to my employer. I've only been there a year. School starts in just a few weeks. Surely the doctor is wrong, I'm going to keep asking him about working, surely he can't be serious about not teaching. I have no idea how I am going to talk to my dean about this. I feel like such a disappointment. I had such plans for this year. I pray they let me do thesis, I know they will.
Soon after the doctor left, my aunt and uncle arrived, if I recall correctly. We shared the news, they were shocked, too. I can't remember how I told my parents - was it on the phone? I think it must have been - but everything's such a blur. I'm sure my mother remembers every detail.
On Friday, July 21, I started taking the drug that is supposed to get me into an initial remission - retinoic acid. This is supposed to be the best thing for APL since sliced bread. A kiss on each dose, and down the hatch. Please work.
I made the call to my boss. I felt like they should know as soon as possible. I certainly didn't want them to hear from someone else. The hospital has so many connections to the school. Anyway, the call didn't go as well as I had planned. I ended up crying - that made me so mad. I thought I could hold it together. Too much too soon, I guess. She was wonderful, though, and told me not to worry about anything. Ha! It's only my JOB - a job I haven't had very long. And I love my job. I want to work. This can't be happening. She was very reassuring, and I knew deep down she was right. My school is a very special place and I knew they would be supportive. I just didn't feel deserving. Of course, they have been wonderful. I have always been so fortunate to find myself around great people and in great situations.
It's been three days since the first IV was inserted, and now it's time to change it out and put a fresh one in. Oh joy. Here we go again. It's the same drill as before. How many people are we going to go through? Three, if I recall. Finally, one goes in. Two hours later, my arm is puffing up below the IV. They take it out and try again. This is a nightmare. Finally, they bring in the one who 'never misses' (a different person - there is more than one) - she used a pediatric needle, it worked.
The doctor comes in and hears of my IV woes. He asks if I want a central line (a tube in my chest from which they can give and take blood, and give medicines - for the next 6-8 months). He has to ask? Of course! That's sounds wonderful - sign me up! How soon can we do it?!
On Saturday, I had a tube inserted into my chest, just under the left clavicle. It is in the subclavian vein which feeds into the superior vena cava, which leads directly into the heart. Hallelujah! All blood is drawn from this line. All IV medicines are given through this line. My chemo will be given through this line. Only if they need peripheral blood will they draw from my arm - and that won't be very often.
After the procedure, I was VERY sore. I guess I'm an idiot, but I didn't think about whether this thing would HURT or not. It did, and a lot. At first, I wanted to tell them, 'Never mind, I was wrong, take it out.' But, then I figured I was a big dummy for not even considering the fact that putting a TUBE IN YOUR CHEST might be a little PAINFUL. So, I dealt with it. After a couple of weeks, it felt fine. I'm such a baby. I am dreading the removal, though. I hope they knock me out.
Although you couldn't prove it by my blood work, I didn't feel sick. I spent most of the time trying to figure out how to handle what was still basically a big shock. Denial, denial, denial. My emotions were such a tangle. I asked to see a psychologist. He was very helpful. He told me that all my emotions and fears were normal, rational, and justifiable. That seemed to help. I had felt like I was throwing myself a bit of a pity party. I didn't want to give up my year. This was going to be a good year. Now, all of that had changed in an instant. BAM! Everything was different now, and all of a sudden. A major shock. I didn't feel I was handling it very well. He said that I was. And since he was a professional, I decided to trust him. He may have been lying through his teeth, but he was convincing, and I wanted to believe him.
My mother-in-law and sister-in-law gave me some watercolors and a neat little clipboard on which to work. They gave me some blank note cards that I could paint - what a great idea! I passed a fair amount of time doing watercolors (mostly bad ones). It was an excellent diversion. I got so much stuff from people - family, friends, people at the college. I was overwhelmed by the cards and calls and things people sent. I have a stack of 'get well' cards 4 inches tall. I have an excellent support network. I am so fortunate.
I got to home on the 27th. My blood levels weren't normal, but I was out of the real danger of blood clotting that I had been in when I first entered the hospital. It was nice to go home.
Home! Home is wonderful. I knew I would have to go back into the hospital at some point, and that it would be very hard to go back after being at home. But that didn't matter. Home is awesome. I had to go to the doctor's office everyday to get blood drawn. That was sort of a drag, but far superior to being in the hospital.
I went to get my hair cut - which may have been a mistake. There were a lot of people there, and my hairdresser appeared to be a little under the weather. I wore a mask, but I didn't change it out (I would find out later that the masks only last 20 minutes). You can see where this is headed.
I spiked a fever and had to go back to the hospital. They gave me powerful antibiotics, but it was probably viral, because it didn't really work. I had a fever every day in the hospital. Tylenol would bring it down. I had also gotten a new rash. Not all over, just on my thighs and arms and forehead. This was different from the other rash. Not sore or itchy, but most unattractive. The doctor said it was probably due to the ATRA - about half of patients get a rash from the ATRA. Yippee. I still had remnants of the first rash. Since I had no white cells, these rashes weren't going away very quickly. Oh, well, at least they didn't itch.
I didn't feel as well during this second hospital stay as I had during the first. The daily fevers were depressing. Emotionally, I was down that I had gotten sick so quickly after being allowed to go home. I wondered if this disease would be a long sequence of hospital stays. What a drag. I knew I had to be more cautious whenever I was home again.
I have been at home for 5 weeks now! No fevers, no chills - my counts have fluctuated here and there, but overall I have been experiencing steady improvement. Take that, APL! The ATRA is working, as expected. Most of the time, I feel good. I have a few weird things that I experience basically constantly - because of being on powerful drugs. I have adjusted to these things, though, so it's no big deal. I hear my pulse in my ears all the time - it's only mildly irritating. Sometimes my head feels pressurized - that has been happening less and less, though. When it does happen, I just sit down for a while and it goes away. I cannot keep the same frantic pace I used to keep. That has been the biggest adjustment. I have had to really slow down. For a while there, I had to take 2 naps a day! Then it was one, and now it is only occasionally. As my red cell counts have risen, I have more energy to do things. I still pace myself, I can't afford to get run down. But I am able to do more, and I enjoy that immensely.
I have started walking. I walk mostly in the early morning when the sun isn't high and it's not too hot. The sunrises are breath-taking over the mountains - I feel rejuvenated watching them as I walk. It makes me feel good. We live in a great neighborhood for walking. No really steep hills, but several gradual climbs that are perfect for me. Sometimes the humidity gets to me, though. I am ready for fall and crisp mornings!
School has started now. I have begun meeting with my senior thesis students. All of the meetings have gone very well - I am not worried about any of the students. They are great people and are going to have a very productive semester. I am looking forward to working with them.
My favorite thing to do is to go to Wal-Mart, Target, K-Mart, or Sam's. They have motorized carts that zip you around - wild fun. I can get my shopping done and not get tired! I only go to Wal-Mart really early in the morning - there are too many people there at other times. After 7am, you can't park anywhere near the building. I can go to Target at any time of day, it's never crowded. Sam's is cool because the isles are wide. I went to K-Mart recently - they have the fastest cart I've seen yet! K-Mart may be my new hang-out. Funny, how your perspective changes. The highlights of my week are when I get to go to the store, very sad!
Everything else is going well. I am able to keep the shopping up, I keep the laundry going, and I keep the kitchen straight. We have a fabulous angel who does the heavy-duty house cleaning every week. She is heaven-sent. I am eating well. And, most importantly, I am staying healthy and out of the hospital! I feel like I have found the right 'recipe' for where I'm supposed to be right now.
I was on steroids (dexamethasone) from August 9 to September 18, almost 6 weeks. The steroids are given when the white counts climb too high, which mine had started doing. I took high doses at first, but after a week or so was put on low doses (2mg/day). I became a voracious eater and had lots of energy. I gained weight (fat!). I was starting to take on the appearance of a cheese puff. It was strange; it wasn't that I was hungry all the time, I just wanted to eat. I have learned there is a difference!
I asked my doctor if I had to keep taking the steroids, and he said I could phase them out, which I did last week. I took the last pill a week ago, and it took almost a week for the effects of the steroid to subside. The desire to eat large quantities of food has, thankfully, gone away. I am losing some of the weight I gained. But, I also have less energy than I had before - naps are back in my daily routine. Even so, and maybe it's because I'm female, I'd rather be losing weight than having a lot of energy. At least for now. We'll see what happens.
My doctor gave me a lot of information today - FINALLY! I was getting pretty tired of waiting for the word to come down. I will check into the hospital next week, and I will be in for at least ten days. I will be treated for 7 days with cytosine arabinoside, followed by 3 days with daunorubicin. If I don't spike a fever, I can go home after the ten days. Yes! I was originally told I would be in the hospital for a month or so - so this is a MUCH better scenario. I will undergo a second round of chemo at some point in the future, but the timing depends on how I respond to the first round. I told my doc I hoped to be done with round 2 before January 1 - he didn't seem too optimistic, but didn't totally rule it out, either.
So, I am ready to get on with it. Hopefully, I won't get too sick. But even if I do have a rough go of it, surely it will just be temporary. Regardless, it must be done! Wish me luck!! :)
I checked myself in to the hospital an hour or so ago. I unpacked all my stuff and the nurse has been by to ask me 100 questions. I am slated for a bone marrow biopsy sometime today - I basically knew this was coming, they need to know if my marrow is in non-leukemic condition (remission) before they start the chemo. I imagine it is - my blood counts have been normal for quite a while now, and those cells all come from the marrow! I am anxious to see what happens. I have planned on getting a lot of work done while I'm in here, so I hope I'm not too wiped out. We'll see!
[Later] The biopsy went much more smoothly this time. I think they gave me less morphine - enough to block the pain, but not enough to send me on a 'trip' like last time. Very nice. I kept ice on the site until bedtime, so it feels OK. I'm sure, in a few days, I'll feel like I've been kicked in the butt, but for now, all is well. Good news: this time the doctor found spicules (small islands of bone growth in the marrow) in what he took. Last time, there were no spicules to be found, which was disturbing. They're there now, so that is a good thing.
Well, so far, so good! I have been on chemo for about 18 hours, and I happily have no problems to report! They give me a cocktail of 3 drugs before each bag of chemo (1 bag per day) - those drugs are decadron (a steroid), zofran (anti-nausea), and attivan (for anxiety). SO, I'm feeling pretty good! I asked about the attivan, because I know it can be habit-forming. They said the low dose they are giving me should keep me out of danger there, so that was reassuring.
I am hoping the doc has looked at the slides he made of the biopsy and comes by today to tell me what he saw. He will be able to look at the cells and determine if the marrow appears normal. It will take a while for the cytogenetic testing to come back (about a week). Those are the real tests - they will show the presence (or in my wildest dreams, absence) of the genetic markers for the diseases (t15:17 for APL, and 7q- for myelodysplastic syndrome).
I was able to get some work done last night, that was nice. I LOVE having my computer with me. I plan on doing a lot of work today, then rewarding myself with the viewing of a DVD movie tonight! This computer is spankin'!
I am still getting work done, and I'm glad for that. I have quite a bit left to do, though, but all manageable. I am having mild heartburn and nausea today, for the first time since the chemo began a couple of days ago. I've asked for some meds, and hope that that will fix it.
I did watch a DVD movie on my computer last night - 'Mansfield Park', from the Jane Austen novel. Austen is one of my favorite authors. It is really neat to have this sort of 'perk' in the hospital! I am sure I'll watch another one tonight. Big fun!
My red cell counts are starting to drop (to the chart!), and I can feel it a little bit. They'll have to go a lot further before I'll really feel weak, so hopefully I have a few more good days in me. I know they will give me packed blood (all red cells) if I need it. I received blood the first time I was in the hospital, and it really perked me up, so I'm not worried about getting too weak.
The doc came by yesterday and said my marrow slides looked pretty good - not a complete remission, but OK. The marrow is in MUCH better shape than it was this summer when I was first diagnosed (not that that would take much). He seemed pleased, overall. He said the next marrow biopsy will come at the beginning of the next chemo treatment - whenever that is. Timing of round 2 will depend on how and when my body recovers from round 1, so it's very arbitrary. I told him last week before I came into the hospital that I would LOVE to have round 2 done by January 1st. He wasn't too optimistic about that plan, but didn't totally rule it out, either.
I have finished one of the chemo drugs (idarubicin) and am halfway through the 7-days of the other chemo drug (cytosine arabinoside, aka Ara-C or Cytosar-U). My blood levels are slowly dropping, but my creatinine and blood urea nitrogen (BUN) levels are stable, which is very good. At high doses, these chemo drugs can cause liver and kidney cells to lyse (break apart) and dump their contents into the blood stream (a potentially toxic situation). So, levels of creatinine and BUN are monitored in the blood to make sure the chemo doses aren't too high. And, so far, I'm doing OK.
I slept most of the afternoon yesterday after they gave me my pre-chemo cocktail (steroid, anti-nausea, and anti-anxiety). The cocktail makes me really sleepy, and regardless of my efforts to stay awake, I can't win. I got more work done when I finally woke up, so I felt pretty good about that. Because of the nap, I was awake pretty late (from my usual schedule), so I watched 'The Pelican Brief' on DVD late last night. The nurses think it's the coolest thing that I can watch movies on my computer.
I am also reading Harry Potter at night before I go to bed. Very enjoyable! These books by J.K. Rowling are lots of fun and very imaginative - a great, light way to settle down for the evening. Rowling is refreshingly creative and the characters are well-developed. I am on the 3rd book now, and have the 4th on hand in case I finish #3 before I go home.
I have completed my senior thesis duties for the week (editing chapters), and will (should) move on to department and division work that has begun to pile up. Ugh. Part of me wants to relax today, but I know I'll lose at least part of the afternoon after I get my sleeping potion (pre-chemo cocktail). So, I should get to work. We'll see if I actually get anything done today.
I started having nausea yesterday - I took a small dose of phenergan last night - it took off the edge a bit and I was able to go to sleep. Nurses were in and out all night, not peaceful. I woke up with nausea this morning, and some tightness in my throat. I have had another small dose of phenergan today - but I'm still feeling crappy. They brought a breakfast this morning that was all fat and spice, things I can't eat if I want to keep it down. So, I'm hungry right now, but I don't know what I want. It's trial and error until I find something that doesn't hurt.
I didn't get much work done yesterday - I sort of took the day off, as it were. Today may be the same, I don't know. It's hard to work when you don't feel so good. The doc said I could take any of an assortment of drugs that would make me feel 'good' - and I'm tempted! The down side is that these drugs would surely knock me out, and I would prefer to be alert and working. But this may change... I'm becoming less in the mood for toughing it out. It's starting to suck.
I got to come home last night! Yippee!! The last few days at the hospital were not particularly fun, so I caved in on toughing it out - no hero here. I took Zanex (sp?) for anxiety. On days 4 & 5 of the chemo regimen, I would have these 'freak out' sensations, looking at the tubes going into my chest, knowing how toxic the drugs were, and wanting to rip the tubes out. Zanex took care of that - there are really some amazing drugs out there. I am glad I am having this cancer now, after so much research has been done. I also started taking the full dose of phenergan for nausea, but not before I actually threw up 3 times. I say 'actually' because I am not one given to hugging the bowl, but this force would not be stopped without some serious meds. Then, I developed a rash that itched so badly that I looked like I was having convulsions. My sweet husband held my hands down to keep me from scratching, and I was flopping on the bed like a fish. Benadryl (iv) eased that. I cannot believe the quantity of drugs I have consumed in the last three and a half months - insane. I started prednisone today to help with the rash, and slowly, it seems to be working - but it is a pill, and there's nothing like getting it in the veins (I sound like a true junkie).
I haven't been on the computer for a few days because I was either asleep or just generally in no mood. When I got on a little while ago, I was overwhelmed by the number of e-mails I got from people sending their love, prayers, and good wishes. I am so fortunate to have such a network of support. In time, I will write everyone of you back. For now, know that your notes have lifted my spirits and made me feel REALLY good.
Well, the chemo is definitely doing its job - today's white counts are almost as low as they were when I was first diagnosed this summer (see CBC log). Platelets are taking a hit, too, but the red cells are hanging in there! Red cells do have a longer shelf life than platelets, so this is probably not unexpected.
So far, I haven't spiked a fever. I am being completely anal about exposure, as I obviously want to avoid going back into the hospital. With white counts so low, I think it would be close to a miracle if I could remain infection-free for a significant amount of time. We'll see...
I know it has only been a few days since I left the hospital, but I can't believe that I haven't caught anything yet. I have basically no neutrophils today. The nurse said they may start to come back up after day 14 (from the beginning of chemo), which will be next Monday for me. I am continuing to be as diligent as possible about cleanliness, but I am sure it is just a matter of time. I have been taking Pepto-Bismol for stomach upset for several days now, and I found out from the nurse this morning that Pepto isn't at all advised when platelet counts are low. Great! I should have called and asked before I took anything - she said Mylanta or Maalox are OK. I may have to get a platelet transfusion this weekend - they weren't even this low (15,000/mm3) when I was first diagnosed! All of this still seems so bizarre to me. I remember this summer when I hassled with the gum infection for a week, until I couldn't take it anymore and finally went to the dentist (which led to the amoxicillin and the rash, and finally a blood test that became the beginning of this whole leukemia saga). I wonder if I will become a hypochondriac when this is all over - rushing immediately for the doctor's office at the slightest hint of infection or pain. I bet I will. Surely there's a balance somewhere between enjoying life and being on constant alert for disease. Ha-ha!! :-)
I went to bed Friday night feeling fine. I woke up early Saturday morning feeling strange. I took my temperature and it said 101.6. So, we called the doctor and he said to go the emergency room and they would admit me from there. The temp kept climbing, to 103.4, I think. I remember thinking that I'd never had a fever that high before. I got a series of fevers over the next few days, mostly at nighttime - the highest went to 104.1. I have been puking like a pro, too. Twice in front of doctors, so rude. I am feeling pretty good right now, with the exception of a bad cough and a pounding headache (that the cough doesn't help), but they're getting me something for that. The doc says I'll be in here a while - until my white counts go up, which could be another week/week and a half. That's fine by me - this came on so fast, I'd rather be here so they can tackle things as soon as possible.
I don't feel I should complain too much, because I know there are others who had a much worse go of it. I am NOT looking forward to having to go through this again, what a living hell. If the leukemia doesn't get you, the drugs they give you to 'help' you will. That sounds really positive. Most of the last 2 weeks seems a blur to me - I have no idea what happened when, I just remember 'scenes'. I guess that's your mind's way of coping.
My counts finally came up, though the platelets are being slow-pokes. Who cares, I think I'm going home today. Just the thought brings tears to my eyes, it will feel so good to be home.
The Hickman (central line that pumps drugs, blood, etc. directly into my heart) is scheduled to come out today. Seems it is full of some sort of rare bacteria (Streptococcus midis). I can't say I'm sad it's going. I'll get something to replace it for the next round. So, between now and then, I can take a shower without having to wrap my upper half in saran wrap. I can take a BATH, a real bath - fully submerged, no saran wrap. That might just be the first thing I do when I get home. I won't have to flush all the lines everyday, or make sure I change the dressing every other day. It was quite a pill, actually. But worth every bit of inconvenience when it came time to draw blood or give meds. Still, it will be a nice vacation from it.
My discharge today will go as slow as possible, I'm sure.
They pulled the Hickman (it didn't hurt at all :) ) and five days out, the cultures from it have yet to grow anything. So could/should the Hickman have stayed? I don't know. I don't miss it - although I still have to wrap the area in Saran Wrap before I shower. It left a rather nasty-looking, gaping hole in my chest that the surgeon said would shrink down to nothing. HA! I'd like to ask him his time frame (next year, perhaps?) - it shows no signs of shrinkage so far. It's not painful so I really don't care too much.
I really don't remember much of the last hospital stay - I'm hearing funny stories here and there of things I said and did. I thought I could fake it through the weekly conversations I have with my thesis students. What a joke! I think they all could tell I was completely doped up. I've had a couple tell me how much better I sound this week, how worried they were, etc - and I thought I could pull it off!! I seriously deluded myself about how much chemo would wipe me out. I still would argue that they had me on FAR TOO MANY drugs. But I feel good now, so perhaps I shouldn't question their methods...
I can't believe how good I feel and how much energy I have (though I'm still at two naps a day...) compared to how wasted I was the previous two weeks. I could have never imagined how low you could feel when you have few blood cells (of any kind) flowing through your veins. Unbelievable. The chemo, itself, is relatively easy. The trouble starts when your counts bottom out after the chemo. For me, it meant two weeks of hell, and it was just a matter of getting through that time. When you start to come out of the woods (when your counts start to rise), you come out fast. It's glorious. On the Friday morning of my discharge, when my nurse brought in the printout of my blood counts for that day, I knew by the look on her face (and by how I felt - human, again) - that I was in the clear. White counts were over 11 thousand - it's the first number you see on the printout and I cried as soon as I saw it. Some days were easy enough to bare, others were horrible and I couldn't imagine it ever ending. But when it finally does happen, when the marrow kicks back in, and when you have the normal numbers and kinds of cells in your blood - it feels like a soft, warm light, making you glow from within - it feels so good I can't describe it. And coming home, oh my God, there's nothing better. Christmas is made for me - I truly want nothing more.
Getting to be home for Christmas was very nice. Even though we drive everywhere to see people and it sometimes feels more like a chore, it is still worth it in my estimation to get to see everyone. If we had kids, I might change my tune - but for now it works fairly well. The cold weather helped it seem more festive, too - and some of the places we visited still had snow on the ground, so that was very nice.
I entered the hospital two days ago to start the second, and hopefully final, round of chemo. Things are going well so far. They put a smaller version of the Hickman in the other side of my chest, just under my clavicle. The insertion site is tiny, and they will pull it out before I go home. The plan is that I won't get an infection this time, since they think the big Hickman was to blame for the nasty infection from last time. We'll see. I'll still have to be very careful once I go home, and you can bet I will.
I got really spoiled being home for so long - over a month! I've only been in here for 2 days and I'm already miserably homesick. I don't mind being in the hospital when I feel bad, but it's a chore when you feel basically OK - quite boring. I am going to start being more diligent about finding things other than the TV to occupy my time. A stellar friend gave me some top-of-the-line water color paper and loaned me her excellent paints and brushes and a great book on water coloring. I may start on that today.
I finished the 4th Harry Potter installment early yesterday morning - what a delight! I hope the 5th comes out soon, I'm sure I'll have to wait a while, though.
I could also be doing some professional work that I've put off. Hmmm. Re-write an old paper for submission to a journal or play with water colors? Decisions, decisions. OR watch 'A Bug's Life' on DVD?! I think I have too many distractions! Or, maybe, I could do a little of all three today - the middle road, you know. Cheers!
I am writing from the hospital. I have finished my second round of chemo - I was in the hospital for a week for that. I was not exactly the model patient. The more times I go into the hospital, the worse I handle it mentally. I don't really know why. I was miserably homesick by the second day. I came home for 6 days at the end of the 2nd chemo. Even though I was tired all of the time, it was great to be at home. When I did start feeling a little better, I effectively lost the use of my eyes for 3 days. One of the side effects of high-dose cytosine arabinoside (Ara-C) is that your eyes can dry out and your lids swell and scratch your cornea. FUN! (not) I called the doctor the morning that I woke up and couldn't open my eyes. He asked what was wrong and I told him that I had tried for 1 1/2 hours to open my eyes, and that it was just too painful - it felt like there were pieces of gravel in my eyes. It's like the old joke: I told my doctor that it hurts when I open my eyes. He said, 'don't open your eyes'. Ba-dum ching.
The first day of my 'blindness' was an interesting experience. It was fascinating to observe how the other senses, especially hearing, kick into high gear to compensate. I was able to get around the house fairly well. My sweet husband helped me out a lot. I hated having to ask him to do basically everything, he was already doing so much anyway. I tried to do as much for myself as I could. I found that the hardest thing to do is to put toothpaste onto a toothbrush. Try it for yourself, it's quite challenging!
By the second day, the novelty had worn off, and I was getting irritated about the situation. The next day I went back to the doctor' office as usual for my daily blood counts. He referred me to an opthalmologist, who gave me an eye ointment that was exactly what I needed. By the next day I could use my eyes again and my world was back to normal. The opthalmologist also said that the dry areas around my corneas would heal themselves, so there should be no long term damage. I'm grateful for that, and much more appreciative of what blind people go through (although I'm sure I don't know half of it).
I came to the hospital the next day to get blood and platelets, but I spiked a fever before they could get the platelets in and I've been here since. My doc says I'll go home when my counts come back up, so I may be here for several days. The first night I was here, I got a bad fever and violent chills to accompany it. My stomach and intestines were killing me, too. This was because I ate a slice of pizza earlier that afternoon - very stupid. FAR too greasy, I don't know WHAT I was thinking! I paid for it through the wee hours of the morning. Once my fever went down and I had emptied my entire digestive tract of its contents, I was able to get some sleep (with the help of some attivan). :-)
I got a temporary central line when I came in for the second round of chemo. They left it in when I came home, with the hopes that I could keep it in until I recovered from the chemo. No such luck. They cultured blood from the lines a couple of days ago and found both Gram-positive (Streptococcus midis) and Gram-negative (E. coli) bacteria. So, today, they are going to yank this line and put in a new one on the other side of my chest. I'm thinking that the scars on my upper torso from all the skin biopsies and central lines must form some sort of constellation pattern. When I figure out which one, I'll name them accordingly. These bugs are easy enough to kill, so they'll load me up with antibiotics and my fever should go down forthwith.
Torturous, this wait is. I am not being the model patient this time. It seems the closer we get to the end of all this madness, the more time drags on. I am not floating through the end of this gracefully, and I'm sure it's annoying more than one of the professional staff here at the hospital. They are, at least, being most gracious. I guess they see this all the time.
I am being more assertive about calling them when I think procedures have not been done properly - I am usually right, and fortunately, they don't seem to mind being 'corrected', or whatever the more appropriate term is. This gives me some feeling of control over at least some small part of this situation. Whoopie.
Doc says my counts will rise around Day 20 (from start of chemo). This is Day 18. I have always been a precocious twit; maybe I can cash in on it this time, and my counts will rise sooner, rather than later. I think the closer it gets to whenever my counts actually DO come up, the more drugs they'll have to give me to settle me down. The wait is making me nuts.
Unless you've had numerous extended stays in a hospital before, I dare say you can truly understand how tiresome (there's a more descriptive word of what I'm trying to say here, but I'm not going to wait on it to arrive) this is. I finally made it through a 24-hour period without a fever. Fevers are major drags. Being here is a major drag. Yet, there is no better alternative. So, I've been in a pissy mood for the past several days, mostly because I have no control over this situation. Fortunately, I have a very compassionate and understanding husband who lets me have a bad mood and doesn't try to fix it. He's such a jewel. There are special nurses, here, too. I would name them, but that is not the purpose of this page - they know who they are.
I awoke this morning feeling closer to normal - we'll see what my counts are. I would love it if they were so high that I could go home, but I know that's too much to ask. I miss my pets and my house and just being in my usual surroundings. Who wouldn't?!
I am not going to be able to teach my cell course this spring like I had so hoped. My replacements are stellar, though, so I am not worried about the students at all - they will be in good hands. Still, I am sad to think that a whole class will go through and I won't know all of them. I may meet some of them later in their upper level courses, but I will probably miss most of them.
I am hearing from different people across the country who find this website and tell me that their doctors are reporting higher incidences of APL than usual. I wonder if something is up here? I wonder if someone is going to look into the possibility of some common denominator here? There may be nothing, but it does seem curious.
I am home, as of the 23rd. Home is fabulous, of course. I am not enjoying an overwhelming amount of energy, but it will build. I so hope and dream that this is it - that this is the beginning of the end of my ordeal with APL. Won't know for sure until we do another bone marrow biopsy, I assume that will happen some time in February.
I did steal off to WalMart yesterday - I was in and out in 20 minutes. It was satisfying enough - getting outside in some way, having face-to-face communication with strangers, it was a good trip. I rode the Zippy cart and wore a mask, even though my counts are decent. Everyone is sick with something right now, and I certainly want to avoid going back into the hospital.
I am restless most of the time, now. My brain is going 1,000 miles a minute, but my body just can't do anything. I did too much yesterday - between WalMart, making soup, unloading the dishwasher, and going to the doctor, I was more than spent. So I have been trying to rest ever since. Boring. I am having moderate success at slowing my brain down. Maybe my attitude is out of alignment, but this part is sucking too. Not nearly as much as it would if I was in the hospital right now! I am frustrated because I can't do what I want. Maybe the Only-Child Syndrome is leaking out around the edges. I am just ready for every aspect of this to be over. I want my body back, my energy, emotional peace, I want it ALL! I am tired of the mess APL has made of my life. I am very angry, still. And tired. The bad parts associated with all of this APL shit can't go away quickly enough. I thought I might learn patience through this ordeal, well some spots can't be removed.
The GOOD news (yes, there is some) is that my white counts are behaving nicely. Rising, as they should (especially since I get a SHOT every day to make them do this). We are waiting for the platelets to come up, I think they will. Red counts are still below average, but hopefully they will rebound on their own in time. This was supposed to be a 'positive spin' paragraph, but I still found a way to complain. Ha ha!
January 29: feeling better
My counts are rising nicely. I have more energy every day. I sleep better and better each night. Things are looking up! I am so glad. When you're at the bottom, part of you questions if you'll ever really come out of it. You know, deep down, the answer is yes - but you still wonder. Well, the answer really is, yes, there is a light at the end of the tunnel, thankfully. I think this really is the beginning of the end. I certainly hope I get good results from the upcoming (exactly when?) bone marrow biopsy - THAT will tell the tale. For now, I am happy to be feeling better and able to do more and more each day. Life is good.
How sick is it to WANT to get a bone marrow biopsy? Pretty sick! But there it is. It will happen when my counts normalize. They are currently residing in the gray area between dangerously low and the low end of normal, so we wait.
I have started a workout program at a fitness center here in town. I LOVE it!! It is really helping me build back muscle mass, as well as my endurance. And, it is loads of fun. I only wish I could spend more time there, it's very addictive! Yesterday, I may have overdone it a bit. I did an aquatic aerobics program that may have been a little over my head, pardon the pun. I had to take a huge nap afterward, I was completely zapped. It was fun, but next time I'm not going to push myself so hard. Yeah, right!
I get more blood drawn tomorrow, and I am hoping the white cell counts are higher than they were last week. Keep your fingers crossed!
I finally got the bone marrow biopsy on February 26. It was quite painful, but I knew I had to have it done. The results from various tests trickled in, one by one. Microscopic observation of the slides looked good - no immature cells, no signs of leukemia. That's a start. Flow cytometry came back and was negative! A small miracle in itself - this was the test that showed the deletion at 7q last summer when I was first diagnosed. From the beginning, no one really knew what to do with this - now we don't have to worry, it's gone! And then, finally, the cytogenetics (RT-PCR) came back and they were negative, too! This showed that the translocation at chromosomes 15 and 17 is gone - no more leukemia! HALLELUJAH!! This means I should be able to expect a "prolonged, durable remission", as my doctor predicted at diagnosis eight months ago (to the day). We are thrilled that this saga seems to have found its end, and it is a good end, indeed.
I will be forever indebted to my brilliant, wise, and fabulous doctor and his equally fabulous nursing staff. The nurses in the hospital took great care of me, too, and were genuinely interested in my success. I will never be able to repay all their kindness to me. I am one lucky young woman.
So, this is the last entry! Keeping this page has been very therapeutic for me, and I am ready to move on now. Life re-begins, and I hope I remember to be appreciative of all the opportunities being in good health affords.
Thanks for following my journal. And more importantly, thank you for keeping me and my family in your thoughts and prayers over these last few months. I cannot adequately express my gratitude to everyone for being so supportive and encouraging throughout this bizarre, and strangely wonderful, ordeal.
Today, a year after the start of my first regimen of chemo, I hiked to the top of Mt. LeConte (a 2600-ft climb) in the Great Smoky Mountains National Park near where I live. It was simply glorious. I dedicate the climb to people currently in the midst of their battle with APL, and to those who have not been as fortunate as I have in overcoming the disease. -JMS
I had a bone marrow biopsy done in January and RT-PCR tests were negative for a translocation at chromosomes 15&17! Yippee! A year down, and I'm still in the clear. I am enjoying excellent health and feel wonderful. My visits to the doc for blood counts happen at 6-month intervals - and counts are normal. I am teaching full-time, and have been since last fall. The pace is hectic, but I seem to be tolerating it well. I have taken up snow skiing, and find it absolutely exhilarating. The rush of fresh mountain air on your face as you make your way downhill is unsurpassed. Zoom zoom! ;-)
Our blessings continue: Last spring, I became pregnant! Josie arrived in November, 2002, and what an amazing and beautiful little girl she is. We LOVE being Josie's parents, and are making plans to give her a sibling before long...
From the earliest days of my leukemia treatment (1 day after diagnosis), I began taking a monthly shot - Lupron depot - that shut my ovaries down. The idea was to stop ovarian activity so that hopefully the eggs would not be affected by the chemotherapy, as the chemotherapy drugs I took attack fast-growing cells. The hope was that my ovaries would be protected from the chemo, so that if we wanted to get pregnant later, we might be able to. And boy, did we! And on only the second month of trying! My husband thinks much of the credit is due to his 'super sperm'... ;-)
Life is good.
A bone marrow biopsy was performed in mid-August and all tests were negative [microscopic observation, cytogenetics (for chromosomal abnormalities), and RT-PCR (for t15-17)]. So, we are hoping to conceive again...
Well, we were doubly successful! I am currently carrying twins, a boy and a girl. They are due this summer, and we are elated. All is going well so far.
Mitchell William Swann and Samantha Abigail Swann are here and healthy. They arrived a little early (35 weeks) but had no troubles at all and are now at home fattening up very nicely. Big sister Josie is doing well, too, and loves the new additions to the family.
June 26, 2012: Breast Cancer - it ain't leukemia!
So, I have to laugh that I haven't posted anything here in 8 years. We've been pretty busy trying to keep up with 3 kids, and it is a blast! Mitch and Samantha just turned 8; Josie is 9 1/2 - they are healthy, smart, funny, beautiful, and FULL of life. Life at Maryville College is great, too. I started a 3-year term as division chair for Natural Sciences this year, Bill has done the same in the Fine Arts Division - it's been an interesting ride, and really nice to be on that particular adventure together. In the fall (2011), I decided that after complaining for years, I was finally going to try to do something surgical to relieve the pain in my back, shoulders, and neck from carrying around the tiresome sandbags other people called breasts - reduction mammoplasty, by its technical term. So, in December I had surgery that took about half the tissue that was there, and it was great to instantly feel some relief. Part of the routine procedure in surgery cases is to send the excised tissue off for biopsy. In 1 out of 10,000 reduction cases, the biopsy will reveal a previously hidden cancer, and I was one of those fortunate ones. It was in the left side (ductal carcinoma in situ, or DCIS), the right side was clear. Unfortunately, because they had no other locational information on the tissues other than left or right side, there was no way to know if the margins were clear. So, my only real option was to have a mastectomy to remove all of the breast tissue. I went for the double mastectomy for a number of reasons, but mainly so that I wouldn't be constantly wondering if the right side was going bad, too. And, surgical removal of all the breast tissue meant that I would not have to do any other therapeutic process - no chemo, no radiation, nothing else. That, my friends, is what they call a 'no-brainer', and it took all of about 10 seconds for me to make the decision once I knew what all the options were. Having 'been there, done that' with chemo for leukemia 12 years ago, if there was any way I could avoid THAT nightmare again, there would be no doubts about going the surgical route. So, in January 2012, a month after the reduction, I had a double mastectomy and Stage 1 reconstruction. And, it is now 6 months after that, and I have no regrets at this point. The process I'm going through now to get some petite and perky ta-ta's hasn't been smooth, exactly, but it's a cake walk compared to what I went through in 2000, so I have no substantive complaints. This is not in any way meant to demean or put down the very real and traumatic experience of losing body parts to cancer (especially body parts very central to your identity), as a lot of my friends (and a dearly beloved relative) have had to do, my point is simply that everything is relative. I was going in for a reduction anyway, so this was nothing but a win/win for me on every level. :)