My 1998 Cancer Experience
(written as a journal 1998-1999)
On January 9, 1998 I had a needle biopsy done on a suspicious lump in my neck. They did not like the look of the cells from that test, so on January 13 they removed the entire lymph node. By the end of that week they had a preliminary diagnosis of Hodgkin’s Lymphoma (a form of cancer of the lymph nodes). The final diagnosis was soon completed and the result was indeed, Hodgkin's Lymphoma. (nodular sclerosing with syncytial variance, Stage III-2-A-S) I started chemotherapy on Friday February 6, 1998.
My first chemotherapy appointment was February 6, using a drug combination called ABVD. In the days following the treatment I never got nauseous to the point of vomiting. For the first few days I was very tired and and had an extremely low energy level. My taste buds were also affected so eating was no longer fun. I found the more bland the food, the better. Anything with a strong flavor or smell would almost make me nauseous. I was taking several herbal medicines but the taste and smell of them is no longer tolerable. During the second week my energy level and appetite began to return, but I felt achy throughout my entire body, very similar to having the flu. As the days went by, I continued to feel better and better, to the point of almost feeling normal, just in time for the next chemo session.
The second chemo appointment on February 19 went much better than the first. They measured some of the readily palpable tumors, and they are already getting measurably smaller! (YEAH!!!) I took along a friend who is a hypnotherapist, and she used hypnosis with me before and during the chemo. This had the effect of making the appointment go much faster, and has dramatically reduced the number of side effects I have had since the appointment. I still had very little nausea, have had a much higher energy level, did not lose my appetite as much, and have had very little pain. The only major effect is that I have lost ALL of my hair. Actually, it started falling out in handfuls, so I had my wife shave it all off. I bought another wig, this one with a "male" cut, and wear it whenever I want to appear more "normal", and not be mistaken for a skinhead. It also does a reasonable job of keeping my head warm during the remains of our Colorado winter.
On a scale of 1-10, with 10 being all the side effects they prepared me for, I would say after the first appointment I was a 6 or 7. After the last appointment I was about a 3. That is a LOT better, and with continued hypnosis, I expect the treatments to get better and better...
Update 3-22-98
My third appointment went well, too. I had my hypnosis in the morning for an afternoon appointment, and used "post-hypnotic suggestion" to get me through the chemo. That seemed to work as well as having the therapist there, as the side effects were about the same, or even slightly less. Now that I know a little about what to expect, that takes away some of the fear. I am still slightly nauseous at times, but nothing that a few minutes, or a nausea pill won't handle.
The worst side effect from this round was bad indigestion, which was combined with severe constipation, which led to a really nasty case of hemorrhoids. My doctor gave me some meds for that, so those are now under control again. Can't you just hear my poor body screaming "What is UP with all these DRUGS????" My medicine cabinet looks like a branch of the local pharmacy.
The tumors continue to shrink, and some of the nodes that my oncologist had been measuring have disappeared completely. HOORAY!
My fourth appointment was Thursday the 19th, and it was the best so far. My hypnotherapist was out of town, so I went to my massage therapist the morning of the appointment. She spent lots of time working on my energy levels, opening my "chakras" and doing hands-on "Reiki" therapy. This was combined with traditional massage, and so far, after 3 days, I have had minimal side effects. Even less than the other appointments. I am becoming a firm believer in all these non-traditional adjuncts to the chemo.
My oncologist has decided that even though the chemotherapy is working well, she wants to add radiation therapy after the chemo is all complete. It seems that my cancer is at a stage called "massive mediastinal involvement". That means that the space between my lungs, and around my heart, are completely filled with cancer. I saw the chest x-ray, and the tumors in that area involve almost a third of my chest area. Can you believe that you can have a cancer that fills that much space and still have NO symptoms from it? Because of that extensive involvement, the radiation seems to dramatically reduce the chance of relapse years down the road. I am not particularly fond of having more treatments, especially radiation, but have read the medical studies that back up the rationale for using it.
Update 4-14-98
Because of the future addition of radiation to the treatment plan, I have now had two chemotherapy treatments using a different drug combination called MOPP. This is a very old combination, but has less potential for lung or heart damage, so it is used when radiation will be needed later. The entire protocol is outlined in detail here, if you are interested.
My side effects continue to be minimal, thanks to all your prayers, hypnotherapy, massage, Reiki, vitamins, etc. The MOPP combination seems to cause less nausea, although there is still some, but leaves me with an AWFUL taste in my mouth! It tastes like metallic ashes mixed with pepper. The taste is there all the time, and can only be masked by rinsing with baking soda water or lemon drops candy. The taste peaks about 4 days after the chemo, and hopefully will be gone in another few days. Due to this change, my taste buds now crave things that are strong and spicy! I have come 180 degrees on food preferences since the first couple of ABVD appointments when bland was the order of the day. There are also some dietary restrictions with this combination. I can't have bananas or anything "aged", like wine, cheese, beer, pickles, alcohol, yogurt, etc.
Update 5-7-98
Eight down and Four to go! (2/3 done with chemotherapy)
I had my eighth treatment today using MOPP. The day of chemo always goes well, as do the next couple of days, due to the heavy IV anti-nausea drugs they give just prior to the chemo meds. I expect to feel well again tomorrow, and then possibly feel a lowered energy level for a few days after that. The only significant new side effect after the last two appointments was a dramatic shift in my ability to sleep well. One of the "P's" in MOPP stands for Prednisone. That steroid has a history of causing hyperactivity and sleep disturbances, so no one was surprised to hear that I wasn't sleeping well. I usually awoke at somewhere between 2:30 and 4:30 a.m. and could not get back to sleep. The past week has not been so much that way. I actually slept in this morning until 7:30 :-) I do have sleeping pills I can take, but prefer not to use them unless really needed.
I did have one interesting thing happen a couple of weeks ago. I came home from work feeling slightly nauseous. I took a relatively light anti-nausea pill that I had taken before, but for some reason it didn't do the trick. So about 45 minutes later I took a Marinol (pharmaceutical TCP). About 30 minutes after that, I was STONED out of my mind! The feeling most certainly brought back some of the memories I had during some college parties 20-25 years ago. There is definitely a certain "feel" to a cannabis high. The high was not very pleasant, as I was with my wife and children, and not at a big party where everyone else was stoned, so I just rested on the sofa and slept it off...
The tumors around my neck, collarbone, and in my armpits have shrunken away so dramatically that they are essentially gone. I have an appointment for another CAT scan and chest x-ray in two weeks to verify that the internal tumors have responded as well as the ones easy to feel. I am confident that they have....My oncologist even used the term "complete remission" today as their goal before radiation. I LIKED hearing that word as a real possibility!
Update 6-4-98
Today makes 10! (only 2 to go?)
I go in today for chemo appointment number 10. If all goes according to plan I'll only have two left. I got the results of my recent CAT scan last week, and the results were good! As reported last month, the tumors are all shrinking or are gone completely. The nodes in my neck, collarbone area, armpits, and abdomen are completely gone. There is still a significant mass in my chest, about 2 inches in diameter and 4 inches long, but even that one has been reduced in size by over 2/3. My oncologist says there is a good possibility that mass may remain as harmless scar tissue for the rest of my life. They will continue to monitor that one and if it continues to shrink during these last two months of treatment, they will add more chemotherapy before moving on to radiation. My spleen is still not normal in appearance, but considering it looked like Swiss cheese on the initial CAT scan, that doesn't surprise me. They don't seem particularly concerned about that either.
I have begun to re-grow some hair, but it is very fine and light colored. They will be returning me to the ABV chemo today, so the hair growth may be short-lived. The initial combination of ABVD was what caused it to fall out in the first place. I am sleeping much better lately and have seemingly adjusted to the Prednisone. A good night's sleep really helps a lot. I still can't really taste food in a "normal" way, but the bad metallic taste has lessened considerably. The other side effects continue to be relatively minor, but a recent twist has been a slight numbness in my fingertips. That hasn't caused a major problem for me yet, but if it worsens, it will (I'm a dentist). I have also had some mild bouts with nausea and depression, but I'm sure the two go hand in hand.
I'm just ready for this to all be over so I can get back to enjoying a "normal" life. (including Alexus of course)It seems that whenever they add a new drug to my schedule, it takes a couple of weeks or so for my body to adjust. Hopefully there will be no more additions to the list of side effects during this last 6 weeks of chemo.
Update 6-22-98
A little "Detour" to the hospital
On Sunday, June 14, I began to run a slight fever. I had been warned by my oncologist that any time I developed a fever of any sort, it was something to be concerned about. With the extremely low blood counts caused by chemo, even a mild infection can turn into a major event. I was also told that any fever of 101 degrees would result in immediate admission to the hospital for IV antibiotics. On Sunday night my fever was 100.5 degrees, so I took some Tylenol and went to bed. On Monday morning the 15th, I was still not feeling up to par, and had a new extremely sore spot on the side of my tongue. The spot was so sore it was affecting my speech, but with my typical "type A" personality, I went to work anyway. By mid-morning it was apparent that I wasn't going to make it through the normal workday, so I canceled the afternoon patients, and went home at lunchtime for a nap. I slept for about 2 1/2 hours and woke up with another fever. This time it was 101.5, so my wife called the oncologist. She said come to her office immediately, and as I had been warned, was admitted to the hospital in a matter of a few minutes. At that point, even though I was disappointed with the inconvenience of a hospital stay, I felt so bad I was ready for something to be done. They immediately drew blood for every conceivable test, took a chest x-ray, and began IV antibiotics.
I was diagnosed as "Neutropenic" and anemic. Those terms mean I didn't have the normal amount of white OR red blood cells, so had no way to fight off any infection. A normal white blood count is 4800-10,000 and mine was 300. I was placed in a private room and any visitors were required to wash their hands, and if they weren't 100 percent healthy, wear a mask before entering my room. I also had to wear a mask any time I left my room.
I was on IV antibiotics for 3 days. As my fever stabilized, my white blood counts began to rise, and I began to feel better. They then switched me to oral antibiotics. Even though my white counts were rising, my red blood counts were still falling from the depressed bone marrow caused by chemo. On Friday I was given a transfusion of two units of whole blood, and released late afternoon. The blood tests never did turn up the cause for the infection, but during the previous week I had a few days of the "sniffles" and another bout with hemorrhoids. Either of those could have been the source of the infection, but since I was recovering, the source was almost an academic point.
I spent a quiet weekend at home and took LOTS of naps. I'll be taking injections of Procrit three times per week for six weeks to stimulate my bone marrow. I also go in this Thursday, the 25th, for my 11th chemo appt.
Update 7-23-98
The Chemo is finally OVER!!!!
I took my last IV chemotherapy treatment on July 2nd. That was followed by oral chemo meds for another week. And I must say, the last treatment was a rough one. I had to take something for nausea almost every day for a couple weeks. Hence the long time period between updates.... But I'm finally feeling better! Hooray!!!! I haven't had to take anything for nausea for almost a week now. I'll have another 2-3 weeks to recover before I begin radiation therapy, but the side effects from that are supposed to be significantly less. My hands continue to be very weak and shaky and I think I'll probably have to go on complete disability from my dental practice very soon. My oncologist said the weakness will probably continue to get worse for a while before it starts to get better.
I go in on the 30th for another CAT scan to see if the cancer is completely gone. But regardless of what the CAT scan shows they still want to do radiation "just to be sure". And since I never want to go through this again, I'll go along with anything that will reduce the chances of it coming back. I'll post the results of the scan as soon as I know them.
Since I am feeling so much better, I think Alexus will be out kicking up her heels again very soon :-)
Update 8-30-98
Radiation Therapy starts tomorrow.....
The results of my CAT scan last month were very encouraging. All the cancer is gone except for a mass still remaining in my chest, and even that has been reduced in size by 2/3. They say the mass is probably scar tissue and will likely never go away, but since they don't know that for certain they still want to do daily radiation therapy for 3 weeks. The best news from the scan is that my spleen has returned to normal as well. That means they won't need to irradiate below the diaphragm, which dramatically reduces the amount of nausea, and other side effects. They say I will probably be very tired during the treatments, but it should be MUCH better than during chemotherapy! I'm certainly in favor of that ;-)
The longest part of the radiation therapy was the preliminary workup. This appointment required that I lie flat on my back, with a pillow under my neck and shoulders, on a hard table, with my hands under my hips. While I was in this position they took x-rays from assorted and various angles to evaluate the exact areas they want to "zap". The only problem was that I had to lie in that position, completely motionless, for almost an hour and a half!!!!! I was about to go crazy by the time they finally allowed me to sit up! They assured me that the actual treatments will take only a few seconds each.
I continue to feel stronger every day, but still haven't been out on the town lately. My legs are still to weak to walk in heels, and my eyelashes have not yet grown back in. My toes and fingertips are still partially numb, so doing my makeup might also be a bit of a challenge....
I am now on partial disability, but will probably go on total disability during and/or after the radiation.... so I doubt if I'll be able to make it to Atlanta for the SCC :-(
Update 10-31-98
ALL DONE with therapy!
My goodness, was September a LONG month! They originally had me scheduled for 15 radiation treatments. (every day, five days a week, for three weeks) But due to the Labor Day holiday, and their decision to increase the number of treatments from 15 to 21, I had an appointment at 1:45 pm every weekday for the entire month of September!!! The first week went along with few side effects, but I began to develop radiation burns on my skin during the second week and had to go on full disability from work. By the end of the original 15 sessions, I was starting to look like an overcooked lobster. By the third week I could no longer even tolerate a light t-shirt. Fortunately I discovered some silk shirts in my closet that I could wear after removing the tags in the back. Most of the burns were to my neck and shoulders, mostly on the back. The best description I can give is it's like a VERY BAD sunburn, followed by another day in the sun, and another, and another.... The radiation also dried my mouth and burned my throat and esophagus so swallowing was very difficult. I almost choked to death on a vitamin pill twice, so had to stop those for a while. The discomfort was bad enough that I had to take pain meds for the last couple weeks, and again had to resort to sleeping pills to get any rest at night. But that's ALL DONE now!!! I have almost healed from the radiation burns and go in for another CAT scan next Tuesday. Then my oncologist says she won't need to see me for 3 months. She's a wonderful person, but I must admit, I'm happy for the break....
As a result of the severe radiation burns, and the continued weakness and loss of coordination in my hands, I've gone on complete medical disability and have, in fact, sold my dental practice. I've never been on disability, or been unemployed in my entire adult life. This will take some getting used to!
The highlight of October was a MUCH NEEDED vacation! After healing from the burns for a couple weeks, I felt well enough to go with my wife for 10 days in Costa Rica. We had never been there before, and can't wait to get back. In fact, I'm thinking of taking a badly needed sabbatical from work and spending several months in the rain forest after the first of the year. What a high energy place the that was!!! I think it would be a great place to get in some serious healing, and ponder the simple question of "What is the meaning of Life?"
Update 12-8-98
"Qualified Remission"
Those are just about the best words a cancer patient can hear! They came after my November CAT scan and chest x-rays. They are using the word "qualified" because of some remaining tissue in my chest. If you recall, from the very beginning the largest tumor mass was in the center of my chest, between my lungs, and around my heart. Hodgkin's disease is known for leaving scar tissue behind even after all the cancer cells have been killed by chemo and/or radiation. Because of that remaining mass, they can't say I'm in complete remission until it has been followed for a few months with additional x-rays. If the mass continues to shrink, or at least doesn't begin to grow again, they will then use the term "complete" remission. I'm not worried and they don't seem at all concerned about it either.
In the meantime, I'm getting stronger every day, and have even been out as Alexus a few times. Keep checking my stories page for more details because not only is she back.... She's BACK with a vengeance!!!! I have been broadening my femme horizons in ways I never dreamed possible before the cancer. This is partly because I sold my dental practice in early October so have absolutely nobody to answer to except myself! This has given me the mental freedom to express en femme in a variety of new and wonderful ways. Stay tuned... and as they say, "you ain't seen nothing yet!!!!!!"
Aesthetic Illusions is also up and running again, and I had a new, all-day client come to Denver from Kansas City last week. We had an absolute BLAST, and I will be posting additional details very soon.
Update 2-4-99
COMPLETE REMISSION!!!!!
On Monday, February 1, 1999, I got just about the best news a cancer patient can get. I am in complete remission from my Hodgkin's Disease. I had an appointment the previous Thursday to review my latest x-rays, but the radiologist's report was a bit confusing for both my oncologist and me. The report said it was a "normal" chest x-ray! We both thought the report was some sort of mistake, since my last CAT scan taken in November still showed a significant mass in my chest. So to clear up the confusion, she wanted to meet with the radiologist and review the films with him in person. But after seeing the films with her own eyes, she was delighted to call me to say "the films were normal!" We had hoped the mass would continue to shrink, but to go from a "significant mass" to a "normal x-ray" in only 3 months was more than either of us had hoped for!!! It just goes to prove "there IS power in prayer!"
I just want to say, once again, THANK YOU, EVERYONE, FOR YOUR PRAYERS!!!! They have been answered :-)
I continue to get a little "misty eyed" when I consider the love and support I have received from friends ALL over the world! (most of whom I have never met in person) I simply cannot put into words the love and gratitude I feel toward all of you....
OK, now that the keyboard is moist from my tears of joy, on to additional fun news.....
At the Thursday appointment prior to my great news, I "came out" to my oncologist, and indirectly to her staff. I felt it was time for her to know all about me, since I had placed my life in her hands almost a year ago. I also wanted her to know the "complete picture" in regards to my gender desires as I have decided to go on full hormone replacement therapy, and begin my transition. I wanted her blessings before moving ahead with this major step, to be sure there were no chances that the hormones could "stir up" anything this soon after chemo and radiation. (my prescribing ob/gyn was also concerned about this) She was not only supportive, she allowed her nurse to give me my estrogen injection. (I brought it along for the appointment, just in case...) Her entire staff was SO loving and supportive of my confession, that I later brought back my pictures, and a dozen roses for them to share.
The details concerning my decision to start on hormone therapy is a complete story in itself, and I'll be adding it to my page soon.
So once again, for those of you who have written with letters of prayer and support, and to those who have been praying for me in silent, I sincerely say "THANK YOU, THANK YOU, THANK YOU"... (even if I did not have the time or energy to answer you personally)
