Hi Alan,
Ken Myers is my donor and he asked me to try to help you with your speech.
It is impossible to try to pack all the memories from mid-1993 to the present into something brief and succinct, so I will write and hope that you are able to use a little to grab a potential donor by the heart. It goes without saying that Leukemia is not only life threatening, it is also life changing.
Before my diagnosis, I just remember being so dreadfully tired. I honestly thought I was having some kind of breakdown. My normal work hours were 7:45 to 4:45 with an hour for lunch. I would leave home at 6:30 A.M.., get to work at 7:00 A.M.., and then sit in the car, literally trying to muster the energy to walk into the office and start working.
At the end of the day I was so tired I was shaking, always close to tears, yet the thought of driving home in traffic kept me sitting at my desk until 5:30 or 6:00, waiting for the traffic to thin enough that I could deal with it. At home, I would feed my animals, then crash on the sofa - too tired to do anything else.
If invited out, I would make excuses. I only wanted to sleep, but the fatigue never went away. When I went to the doctor for treatment after a freak accident, I was almost relieved to realize that something was really wrong. I wasn't crazy. I was sick. I just didn't realize how sick.
I was put into the hospital for tests. It was late in the day and I was alone when my new doctor came in to talk. He told me the diagnosis was Chronic Myelogenous Leukemia (CML to the in-crowd), and discussed treatment options; basically, living an average of 3-5 years on oral therapy, or the possibility of a cure through a bone marrow transplant. Those were basically the only options.
Recklessly I vowed that I wanted a bone marrow transplant. I wanted the cure. Nothing else would do. Then, as he was leaving, I asked "how do I tell my family... my friends?" He said "just tell them." I asked "how do I explain it?" He gave a rueful grin and said, "tell them to remember "Love Story".
I just looked at him, my heart sinking. "But she died".
Several hours later he called me, asking if I had any more questions after having a chance to absorb the enormity of this thing. I thought "how compassionate" and felt lucky to have found a doctor like him. I'm still grateful to him and his wife and family for the kindness they have extended to me. He has always been straight forward and honest, answering my stupidest questions, and allowing me to have input into treatment options.
That was in September 93, and all the typical emotions poured out and had to be dealth with - shock and denial, anger, despair, fear, and hope. In December, I visited the Fred Hutchinson Cancer Research Facility in Seattle for a consultation. I had not found a donor among five family members, and after first cousins are tested you have to go to the registry for the world
wide donors.
Seattle is where the concept of non-related transplants originated. My doctor thought this was the best place to go if things could be worked out and, miraculously, things fell into place. When a donor was found in June 1994, arrangements were started.
On August 1, 1994, I left Atlanta during a horrendous thunderstorm. Sitting on the runway for over an hour, tears finally started to come. I had been on auto-pilot ever since the diagnosis - doing what had to be done and to hell with the consequences. Watching the storm outside that mirrored the turmoil inside my mind, I prayed as never before.
When the storm broke and the sun streamed from behind the dark clouds, I saw a figure. Whether it was the power of prayer or just wishful thinking, the figure took the shape of a winged being from the waist up. It only lasted a few moments, but my fears were quieted.. I had a guardian angel watching over me.
I think you have to reach deeper into your own soul and heart, draw on whatever strength you have and still ask God for more.
After the transplant, while still in isolation in a laminar air flow room, I would pray every night. God, please give me the strength I need to get through this - the mental, physical, emotional and spiritual strength. I asked for signs, and found them.
My favorite song as a child was my grandmother singing "His Eye is on the Sparrow" but I seldom heard it in my
Methodist church.
Late one night, about 2:00 A.M.., when things got quiet on the ward, I lay
awake clicking through channels on the TV. I never watched revival shows but
for some reason I stopped and watched part of the Benny Hinn healing.
I've always held that type of service in a back corner, mistrusting the cures on demand. On this night, they brought up a gentleman who looked very familiar.
After hearing his tale of a car accident and broken body, and watching the preacher place his hands on this man, I nearly changed the channel again. For some reason I kept watching, half jeering mentally. Someone spoke out.
This man is Ben Vereen, the famous singer and dancer, who has been unable to perform because of his injuries. The preacher returned to Ben Vereen. Was this true? Had the healing helped?
Ben Vereen started shuffling around, his movements growing more easy. Tears started running down his face. I was still skeptical. How much were they paying him for this display? Then, Benny Hinn asked him to sing.
Vereen thought a moment, and agreed. When the words from "His Eye is on the Sparrow" started pouring out of his mouth, the tears started pouring out of my eyes and my heart. This had to be a sign meant for me, and from that moment I knew I was going to survive the transplant.
It has been hard. I've seen many of my co-patients die, and I had several life-threatening complications within the first 6 months after the transplant. But I'm alive.
The medications take their own toll on your physical and mental health, and sometimes it was a struggle just to breath. It is just the matter of taking life a day at a time, getting through each day, and asking God for the strength needed to keep going.
You have to humble yourself and accept that your mind and body are not working properly, but know that it is a temporary handicap.
One thing I learned is that I am much more vain than I ever believed. When you are bald from chemotherapy, swollen and puffy from prednisone and other medications, you have to deal with appearance as well as physical well-being.
Now my hair is back (the curl was only temporary) and most of the puffiness
is gone, but I'd like to pass on to others that you should never avert your
eyes from another patient. It is important to have someone look past your
infirmity and speak to the person inside.
It helps you keep your humanity anchored. If another person looks around while talking to you or speaks to your companion rather than directly to you, you start feeling ashamed and insignificant. This is such a little thing, but one that I found very hard to take.
I am now almost 4 years out of transplant. I was on disability for 2 an a half years, but returned to work full time in February, 1997. I now not only work full time but also have a part-time job on the side. This is basically a financially necessity, but I've found that getting outside and meeting people has helped me have a brighter outlook even when I'm tired and discouraged.
It takes awhile, but you finally realize you can actually start making plans for the future. It's still one day at a time, but you can envision a life full of meaning and hope.
I've been asked what the transplant means to me. It means that I will probably get those extra 20+ years I had taken for granted. Even if I don't, I will try to fill the remaining years with the things most important to me. As with most life threatening situations, you come to value friendships more than material things.
Although I don't know if I will ever feel "safe" again, you learn to stop
waiting for the bad news and to enjoy the little things again. When you are
outside watching the clouds and nature, and a soft breeze brushes your cheek,
you feel your spirits lift knowing that life is still within you.
When I see a nice looking man and I feel that attraction, I know "I ain't dead yet!"
When telling someone of the experience, I can only say it is absolutely the hardest thing you will ever, ever do. It is being reborn, literally. You are completely broken down in body and must literally come back from the dead. When you realize your immune system is nonexistent, your blood counts are almost zero, and that your whole life rests on the generosity of a total stranger - your donor - you are so humbled.
Most people think of organ donation as something that happens after your death and they harvest your corneas or heart or internal organs. But being a bone marrow donor is something you can do while you are still living. It is something wheret, after a year, you can see the visible results of your donation when you are able to meet your marrow recipient.
There is some discomfort, yes, but my donor has indicated that he would be willing to donate again if another match was made. I have met my donor, and I am proud that his blood is in my veins. I honor him for his generosity. I also marvel at the odds against finding a non-related donor who turned out to be a perfect match to me.
Out of the largest gene pool in the registry, one million plus, ultimately only two possible donors were found for me. Ken comes from an Italian background. I come from Irish & English. To think of God or fate or chance bringing the two of us together out of the infinite genetic pools out there, leaves one in awe.
Patients who undergo a bone marrow transplant fairly soon after diagnosis
seem to have a higher survival rate. Too many patients have waited years
without finding a donor. Patients from Black, Hispanic and Oriental
backgrounds have very few potential donors to draw from.
To those thinking of becoming a donor, especially those from an ethnic
minority, I strongly urge them to do so. The more potential donors
registered, the more lives that can be saved.
I am ashamed when I think back on the times that I could have been a blood
donor and didn't do it. I heard all the positive things about giving blood,
but just didn't take the time. Most people don't even think about such
things until it hits close to home.
Now, when the call for donations of blood, platelets, etc., goes out, I can't
help. I can't give blood to
anyone because of all the chemotherapy and radiation received during the
transplant. They've told me that I can't donate my organs to help someone
else live. They can't risk that one tiny cell might cause problems for
another person.
I pray that research will find a way to change that. I want to be able to give back what was given to me, and if telling some of my story will help encourage people to sign on as donors, I pray that they will hear my plea.
Give the gift of life while you are alive and be aware that your selfless act
has benefited another human being. You may or may not see the results but,
good or bad, you have given the chance of life to a child or adult facing
death.
In my mind, this is just as heroic as saving the life of a drowning victim or
pulling someone from a burning building. This is a hidden act of courage.
There won't be headlines, but it is the small, quiet deeds that make a
difference. I consider my donor a hero. I think he scoffs at the idea, but
in my heart I know what he has given me.........
A new chance at Life. I hope I don't let him down.
Janis' story has touched many. Here is a letter I received from Bill about it that is so incredibly powerful.