Many of you have asked me what treatment was like, what side effects I had, and what medicines I took. So, I thought it was time to post this "retro" journal. I hope it helps.
Well, here is my very short bio of the time when I was diagnosed with leukemia. Many of you are in school or have been diagnosed with cancer and have asked me what it was like and how did I find out about my leukemia.
Please note that the side effects and symptoms I received from leukemia and the treatment are not the average results. Every patient presents, recieves, and reacts differently to leukemia and treatment.
Once upon a time...
I was diagnosed on June 6, 1995. It all started when I noticed some swollen lymphnodes in my neck. I went to the doctor and was told I had a virus. He said, "If the lymphnodes don't go away after a month, come back and we'll do a biopsy". But as time went on I continued having more symptoms like tiredness, tenderness and pain in my bones, and stomachaches, and headaches.. Shortly after the symptoms flared, my allergies started up. I have had allergies all my life, and part of my allergy treatment was prednisone (among other treatments). After taking the prednisone my lymphnodes started to shrink in size. I remembered from school that prednisone could be used for many things including anti-cancer therapy. I told my doctor about my findings (some research, huh? National Cancer Institute, here I come!) and he did a blood test. This was on a Friday. The following Saturday my doctor's brother called me. He had never treated me, but I knew who he was because he shares the same office as my primary doctor. However, he is a cancer specialist. When he called, he asked me a lot of questions concerning my health, but couldn't give me a diagnosis over the phone. He asked me if I could come to his office on the following Monday for another panel of blood tests. But on Sunday, he called my family and me to his office for a consultation. That is when he said I have leukemia. He didn't know how bad it was, but said, "If it isn't too bad, I would take pills for a few years. If it is a little worse, I would spend a week in the hospital for chemotherapy then take pills and shots for three years. If it is very bad, I would have to be hospitalized for a long time". So during the next day, the Dr ordered a bone marrow biopsy. This procedure was performed across the street at the hospital outpatient. He also ordered that I receive 4 units of whole blood just to keep me going until I could receive treatment in a cancer center. So, after my Bone Marrow Biopsy, I went upstairs to be admitted to the hospital to start my blood transfusion, which ended the next morning. When I returned home from the hospital, I felt much better due to the new blood I received! So, I took this opportunity to visit my friends at work. I had no idea if this would be my last opportunity to speak with them. I spoke with some on a one on one, and others I spoke to as a group. Basically what I told each was the same. I told them that I had been diagnosed with cancer. It is called leukemia, which means cancer of the blood and blood forming tissues. I don't know how severe it is, or if I will live long. I told them that just in case something should happen to me during treatment, I wanted them to know how much I enjoyed working with them, and I was proud to be their friend. Most of them started crying, and that is very normal. So, I hugged them and tried to reassure them that I would fight as hard as I could and to the end, and the rest is in the Lords hands. I made jokes hoping to make them laugh, which seemed to help. After I spent some time there, I went back home because I was getting very weak.
Dr. sent me to Stanford University Medical Center for a consultation that week. After my consultation, the doctor at Stanford tried to have me admitted but due to insurance conflicts, I couldn't be treated there. My insurance would only approve U C San Francisco Comprehensive Cancer Center. So, I went to UCSF to meet my oncologist that was recommended to me by the doctor at Stanford. It was on a Wednesday that I arrived. That day, I was given another bone marrow biopsy, spinal tap, and blood tests. A bone marrow biopsy is a procedure that allows doctors to examine bone marrow and pieces of bone under a microscope, which allows them to diagnose cancer cells from normal cells and to confirm remission. I had to lay on my stomach, and pull my pants down (..what!? No Drink, at least??!..Well! I NEVER! just kidding). Then the doctor, cuts a small hole in my hip, and presses a thick sharp, jagged needle in through my hip and into the bone. Once the needle cracks, and breaks through the bone, they withdraw some marrow, and twist the needle to break off bits of bone to examine later. There is no way to deaden the nerves in the marrow, so you have to deal with the pain. But the skin can be numbed and a patient gets some pain medicine before the procedure. The doctor has to press and twist the needle very hard in order to pierce the bone. I had somewhere around 15 bone marrow biopsies during my treatment! So, after these procedures I got settled in my room and basically got familiar with the program. Thursday I had a Medi-Port put in my chest. and was given hydration. The Medi-Port is a catheter with three little tubes for receiving medicine, transfusing, and removing blood. Normally it is about a half-hour procedure, but the doctors had some problems with mine. The doctors said I had a lot of muscle in my chest and it was difficult for them to get the catheter and wires into the right places, so they had to remove and re-insert the catheter in different areas of my neck and chest. It took about three hours for them to get the port in. And since I was awake I was in tears I was so scared. I could actually feel the guide wire going through my veins and into my heart! Each time the last attempt failed, the surgeon had to cut another small hole to insert the catheter tube in a vein. Finally the nurse gave me an injection of something to calm me down. But eventually they got the catheter in. They called in a surgeon and she was able to get the darn catheter in place. Well, it turns out she is the Chief of Cardiac Transplant and the wife of one of my cancer doc's. Later on, down the road both times when I accidentally ripped out my port, she kindly made time to put another one in for me. The other option instead of a catheter is to be poked constantly and have a new iv started every week. With any surgery there are risks, but I gladly accepted them in turn for a catheter and saving my arms from needles!
On that Friday I started chemotherapy and during the night, my kidneys shut down. Apparently the leukemia cells were very sensitive to the chemotherapy which caused the cells to dissolve very fast. And part of the cause was called Salt Wasting Syndrome. This event put a lot of poison in my blood stream, which my kidneys could not handle, so they shut down. Think of the leukemia cells as little water balloons. Each little water balloon contains poison. What happens is that one of the chemotherapy drugs destroys the water balloons and the poison is let into my blood stream. This condition is called Tumorlysis Syndrome. The good news is that my cure ratio went up after the Tumorlysis syndrome. It meant the leukemia was sensitive to the treatment. It was working. So, on Saturday they stopped the chemo and just gave me hydration and some diuretics to try to make the kidneys work again. My initial weight before treatment was180 pounds (on Friday). Hydration and diuretics didn't work, I couldn't urinate, so by Monday I had swollen to 235 pounds in fluid retention! My eyes were swollen shut and my skin looked like you could pop it with a sewing pin! In some areas, my surface skin would tear and bleed a bit. I was in so much pain from not being able to urinate! So, I had to start dialysis. A few tubes were surgically placed in my abdomen and I was on dialysis for a few weeks. The dialysis caused intense headaches to which migraines can't be compared! After which my kidneys started to work again, I started by urinating about 1/8 of a cup periodically and shortly after it was like a dam broke! I was filling up a full urinal every half-hour. I kept three urinals on each side of the hospital bed!
Once I was in the safe zone, and the doctors felt I was ready, the dialysis tubes were removed and my chemotherapy was started again. This time I started on a different chemotherapy, and I had another rare side effect. It is called Severe Whole Body and Muscle Wasting Syndrome. When I started this different chemotherapy regimen I weighed about 210 pounds (I was still a little heavy with water weight). In one month I was down to 104 pounds! The reaction to the chemo caused me to lose all my muscle and a tremendous amount of weight very fast. Eventually I looked like a dead concentration camp victim! I was literally skin and bone. A skeleton with a thin layer of skin! I had no strength left! I couldn't feed myself, I had no strength to hold a plastic spoon, couldn't use my hands, I couldn't write, someone had to pick me up and put me on the toilet, and clean me afterwards because I couldn't do it myself I was so weak. Someone had to bathe me and dry me. And if I wanted to turn over in bed, someone had to roll me over. Basically, I had to be cared for like an infant. And I couldn't eat because of severe nausea and vomiting. I was literally vomiting blood and pieces of eroding stomach and esophagus tissue! Day after day, all day long! Sometimes it got so bad that after about twelve days of constant throwing up, they had to put me to sleep and keep me sedated for a few days. Plus, I had raw sores and ulcers in my mouth, and down my throat. The doctor described it like this to my family, "Imagine someone taking a knife and skinning the first few layers of skin off your mouth, tongue, throat, and stomach and then pouring Listerine (mouth wash) or salt water in his mouth and throat. That is what it feels like". So I didn't eat one piece of food for a month. Since my mouth was in pain, if I threw up, the acid would just make the pain much worse. And I couldn't receive IV nutrition because that would have shut down my digestive system and I would have had a bigger problem. So for one month, I didn't eat, and was only given hydration and medicine through the IV. But after a month, I finally received some IV nutrition after I started eating. I started on a half of a cracker a day. A few days later, a whole cracker. A few days later it was a cracker and a piece of cheese. I ate like that until I could eat a whole sandwich or something similar.
Then I started physical therapy. I had to learn to walk again, feed myself, write, all the basics all over again. After almost eight weeks in the hospital I went home. Some medicine I took gave me an appetite and I ate a lot! I ate a lot of fast food. And gained some weight for the next round. Also, my dad made some very rich milkshakes everyday for me to drink. Each one consisted of: two scoops ice cream, 1cup of extra rich milk, half cup half and half, and carnation instant breakfast. I drank between 3 - 5 a day until I went back to UCSF for my next round of chemo. So, about ten days later I returned to the hospital. Had the new chemo, but unfortunately they found a leukemia cell in my spinal fluid. How the doctors found the cell was in the spinal fluid from a spinal tap. A spinal tap is normally a ten to twenty minute procedure. I had to lay in the fetal position on my side. The doctor cuts a small hole in the base of my spine, then tries to find a spot where the bones spread and a catheter can be placed in the spinal canal. This is to get fluid out for testing, and for injecting medicine to the brain. However, I have a slight curve of the bottom of the spine and that caused more problems for them. The first time they tried a spinal tap with me it took about two hours of constant inserting and removing a thick, long needle in my spinal cord, hitting raw nerves and sending waves of pain in my body. Finally they gave up for the day. The next day it was another two hours and finally they got the needle in. The doctors told me that if I wasn't able to have a spinal tap, I would have had a hole drilled in my head and a port placed in. They told me it is rare to need radiation with the type of leukemia I had (ALL), but it does happen, and because they found a leukemia cell in the spinal fluid I would need radiation. They didn't know if I would need one or two very heavy doses of radiation or about a few weeks of light dose radiation. The next day they told me I would need a few weeks of high dose radiation! So for a few weeks every day, I had intense cranial and spinal radiation, which later caused me to lapse into a semi-coma state for about a week, a severe neurological deficiency. That is called Somnolence Syndrome. I was awake, but didn't know who I was, where I was, who was around me. I was like that for about 5 days, and gradually came out of that state because I was given cortisone treatments. It was caused by pressure of fluid around the brain and swelling of/in the brain, which was caused by the radiation to the spine and brain.
During all of this, from the beginning of my treatment, I had about a dozen spinal taps and about 15 bone marrow biopsies, so I still have lower back trouble from all the poking. I also suffered severe body pain, for which I took strong pain medicine and was sometimes hospitalized. For a while during treatment, layers of skin would peel off my hands and legs, which was painful. That side effect eventually went away. I was also hospitalized numerous times for neutropenic (very low immune system) fevers. Today I still have some cancer fatigue due to the Wasting Syndrome. I also have some short term memory problems caused by the radiation to the spine and head, and the chemotherapy placed in my spine to get into the brain. Well, this is a very basic rundown of my leukemia treatment and some side effects that I received. It would take much too long to write everything that happened to me, plus there are some events that I don't want to discuss. They are bad memories that I'd rather forget. Basically, I wanted to share with you some idea of how the leukemia and treatment experience was for me, while giving some of the lighter descriptions and not going into the more horrible side effects and painful situations. I didnt want to be very graphic.
The way the chemotherapy was administered was similar to: Chemo A is on days 1, 3, 5, 7, 9, 11, 15. Chemo B is on days 2, 4, 6, 8, 10, 12. Chemo C on days 1-5 and 11-16. And so on. And I would take chemo pills, antibiotics, and shots in the muscle. Then on the other round, was Chemo D on days 1, 3, 5, 10 and Chemo E on days 2, 4, 6, 8, 15. And I would take more shots and pills. Then on the next round I had 40 hours of straight continuous infusion of high dose chemo. However, I did the 40 hour thing three times. THEN, I repeated the whole process over as part of treatment phase B. And this time, I had either five or six 40 hour infusions instead of three like in treatment phase A. Then for phase C, I took chemotherapy pills at home on a strict schedule for a few years. Then about three years after I finished treatments for leukemia, I developed hemochromatosis. It is an iron metabolism disorder. My body started to store up iron. If a person stores iron, and doesn't get rid of it, over a period of time it starts to go from the blood into the tissues and organs. Once that happens it damages the organs and can cause organ failure. It affects the heart, liver, brain, spleen, and kidneys. The normal measurements of iron in a person are about 50- 150. When they noticed I had a problem, my iron counts were at 6,600. So I had a unit of blood removed every two weeks for a while, then it went to once a month. I've stopped now and my iron is at normal level. Sometimes I forget, and will ask my doctor why I am taking so long to get back to normal. He is always patient with me, and answers me truthfully..."Michael, you had a very aggressive form of leukemia, and we had to treat you very aggressively, and unfortunately, you had very rare and severe side effects. That's why it was believed I had "almost" a week to live when I first entered UCSF Comprehensive Cancer Center for treatment. My doctor continued, "We take full responsibility for your condition today, however, we firmly believe that if we hadn't hit you as hard and humanly possible with everything in our resources for your cancer, you wouldn't be here today". And I reassure them that I thank God everyday for sending me to UCSF to be treated and cured! UCSF saved my life! There is absolutely no way I can feel bitter at these God given doctors and nurses! And the best part is that looking back, I can see how God had His hands at work EVERY step of my journey, and STILL does today! So, now I use my experience to help others. I live at home, and I enjoy working on my web site. It is rewarding. Plus I volunteer with the Leukemia and Lymphoma Society as a Peer Counselor in the First Connection Program. I have benefited so greatly by this experience. A few years ago, I conceptualized and organized, and facilitated a "Long Term Illness" Support Group at my local parish. I organized the meeting to revolve around life after or during long term illnesses. I organized book "rentals", I supplied many health, and spiritual books and literature. For just a simple small donation to the parish, they could "rent" a book until the next meeting. I had literature on many cancers. And I supplied many resources. It was a bit much for me and the meetings lasted only a year and a half, as partly to blame, and unfortunately, many of the regulars succumbed to their disease.
My faith has deepened and has become much more richer with this life changing experience. I am closer to my family, friends and relatives. My outlook in life is much better and more positive.. Oh sure, I have my occasional bad days and bad moods just like everybody. But I truly consider myself blessed and so much luckier than so many other people. I thank God everyday for my life. And I thank God for the people in my life!
God bless and Peace be with you, everyone!
The names of my chemotherapy: Methotrexate, Daunorubicin, Ara-C, VP-16, 6-Mercaptopurine, L-Asparaginase, Cyclophosphomide, Prednisone, Vincristine, Purinethol, Pentamidine, Leucovorin.
The names of pain medicine and anti-nausea meds I had: (anti-nausea) Ativan, Benadryl, Ambien, Versed, Marinol, Kytril, Zofran, Compazine ; (pain med)Demerol, Dilaudid, Morphine, Darvocet, Percocet, Vicodin, Tylenol-3, Oxycodone, Hydrocodone, Oxymorphone, Hydromorphone, MS-Contin, Codiene
Other Medicines for General Purposes, I had: Fludrocortisone, Magnesium, Amphoteracin-B, Ceftazadine, Vancomycin, Hydrocortisone, Septra, Allopurinol,
Dapsone, Cipro, Fluconazole, Metoprolol, Indocin, Cytotec, Flagyl, Potassium, Florinef, Acyclovir, Endomethacin, Albuterol, Neupogen, Amoxicillin, Azithromycin, Clonidine, Aciphex, Propranolol
