Meet Granny Barb
My name is Barbara, I'm known on the Internet and in cancer circles as Granny Barb. I was diagnosed with chronic lymphocytic leukemia when I was fifty, and that was eleven years ago. I live in the state of Missouri, but I was born in the state of New York, and you'll hear it in my speech, even though I've been gone for 25 years. My husband and I have celebrated 41 years of marriage, and we have three children, who have given us three grandchildren.
The diagnosis
I have to take you back to eleven years ago, on a lovely August day, when my husband bugged me because he wanted me to get my cholesterol checked. And I called the doctor's office finally, just to get him off my back, and went in for blood work. I got a call that evening that said, please come in again, there's something kooky with the blood work. We'd like you to come in a let us do it again. And being a good soul, I did that. I went in the next day, no qualms, no nothin', just went in. And the doctor looked at me and said, there's some strange smudge (sp?) cells in your blood, your white count is up close to 20,000, which is way out of whack. I think you have leukemia.
Why me?
Well, at that point, I knew leukemia only as a childhood disease. I knew some adults got it but I thought it was very rare, and my first question was, what did I do to be this rare? But I went on to the hematologist using the theory, don't worry about what you don't know about yet. The hematologist did a bone marrow biopsy, because in those days, that was the only way to do, and the bone marrow biopsy showed chronic lymphocytic leukemia. Again, I knew nothing about my disease. I was in a state of shock, because the minute somebody puts the word "cancer" and your name together, you lose it. You're terrified. Your's scared out of your mind. And I was no different from anybody else. This was way back in August of 1989. The one thing I knew was that cancer was no longer a death sentence and if there's something I want to tell people right now, it's "relax, you don't die from cancer, most of the time."
From bad to worse
For three years, the best treatment for my disease was watchful waiting. We sat and watched my blood counts go up. It's a terrifying way to go, but there is research out there that shows that early treatment of the chronic leukemias, is not always the best thing to do, because there is no survival advantage, and sometimes, if you take drugs too soon, you stop reacting the way you should to them, and there's nothing left in the arsenal to give you to fight the cancer when you really need it. So for three years I was in watch and wait, and then I drove twenty miles each way to and from work, and I started finding that coming home from work was becoming a terrifying ride, because I was afraid I would fall asleep - I was that fatigued. And so I didn't even connect it with my cancer. I just started drinking a cup of coffee at about three o'clock in the afternoon, so that I could get home safely and not worry that I might fall asleep on the drive. Finally, the fatigue became so great that I went to see the doctor, and he's been checking me every three months, and I was fine at the last checkup, my counts were up but not dangerously so, and I called and said, I think I'm in trouble. Went in, and indeed, I was in trouble. By this time my whites counts had reached a hundred thousand and my red counts were all down low. I was anemic, I had extreme fatigue, I had nodes in my neck and under my arm that were enlarged, and I was pretty miserable. And I was catching everything that was out there to catch, so I had a constant respiratory infection. The doctor said we really need to start treatment.
An informed patient
Now, I had been doing some research at that point, because although I knew no one who had my disease, I had gotten on line and joined the original Cancer List. And I had learned a little bit, not enough, but some, and I knew that there were two major drugs that were being given for my cancer. One had been around for thirty years, it did not give you a remission necessarily, but it did control the symptoms. The other one looked beautiful; it controlled the symptoms and many people got a complete remission. So I kind of knew what I wanted to do. The doctor said, we have a clinical trial going on where you can take the old drug, the new drug, or a combination of the two drugs. But it's a random study, and you will not know which of the drugs you will be receiving. In actual fact, now that I know more, I would have known, because one is given orally and the other is given intravenously. In fact, I chose to use the intravenous drug and did not take part in the clinical trial. But let me tell you, the result of the clinical trial was that the drug that I chose, the intravenous drug, did a better job of giving remissions, the combination of the two drugs was too toxic for many people, and they had to stop that arm of the trial. So I went through - and the name of the drug, by the way, that I took, was Fludarabine. It's a user-friendly drug for most people. I did not lose my hair, I did not miss a day of work. I would come in in the afternoon after work and have my therapy, which took about 45 minutes, because it was given with an anti-emetic, a drug that would keep me from vomiting if I became nauseous, and I had Fludarabine 5 days a week for one week and then three weeks of rest. It worked beautifully for me, and after six months of this treatment, I went into a remission.
Good news and bad news
We never did a bone marrow biopsy to find out what kind of remission I had in my bone marrow, and I'm really sorry that we didn't. With 20-20 hindsight I would have asked for one, even though they're not very pleasant. And for 8 months I had a lovely remission, and then I started watching the counts go up again. Now, I was in denial still, because I watched those counts go up for the first two or three months and didn't even react to it. I just knew that I was still in the normal range, I was okay. When we crossed out of the normal range, I knew I was in trouble again. This time I asked for a second opinion, and was sent down to Dr. Michael Keating in Houston, Texas, at the M.D. Anderson Cancer Center, and Dr. Keating put me on the combination that they were examining them, which was fludarabine with Mydzantrone. Mydazantrone is a very good drug, but it has an unusual side effect, it turns your urine blue. The first time, nobody warned me about that, so I was a little shook up. But after that I got used to the fact that I would have chemo and then I would urinate blue. That was six months of the same kind of IV treatment. It took an extra fifteen twenty minutes to get the midazantrone into me, so it wasn't a big deal, and again, I worked through it. No hair loss, no real side effects. I was very fortunate.
A complicated treatment
I was doing better, and I developed what I can only call the cough from hell. It was so loud that you could hear it from one end of my house to the other. I worked in a large building and you could hear me from one end of the corridor to the next. What had happened was that cancer cells had moved into my sinus walls and were putting me in a situation where no antibiotic would work, and I was coughing, I couldn't even get a sentence out. And for someone who makes communication her life's work, that's kind of difficult. Went back down to MD Anderson and was told they were ready to do a stem cell transplant. They had taken my stem cells in the past, so they were there and waiting. I was all set to go for the stem cell transplant, and the Friday afternoon before I was to leave, I get a call from MD Anderson, and my case manager says, I know that you're proactive about your health, but your insurance company is not approving you for this treatment. NaÏve as I was, I said, Don't worry about it, I will call the insurance company and get it straightened out. What a laugh!
A light at the end of the tunnel
That entire afternoon, I was on the phone with the insurance company, and finally I got a straight story. They felt that I did not meet the criteria for the protocol that I was going to be taking place in. Clearly, that wasn't acceptable to me. And they had me so upset by that time that I simply said to them, I am going to have my attorney call you because you've gotten me to the point where I'm not thinking straight. My attorney is a very straight-thinking man; perhaps you can make him understand. And I got out at that point. My attorney did call and they did hold their ground, that I was not able to participate in that trial. So I started calling all over the country, and I talked to people at many cancer centers that were doing transplants. I became a candidate for a bone marrow transplant, which I had in June of 1997. I'll tell that story if there's time, later, but right now I have to tell you that it is three years post bone marrow transplant, and using my own cells, which they purged of cancer, today I am cancer-free. And I go in to Boston once a year for my checkup, and then we celebrated for the rest of the year, the fact that I'm still here to talk about it.
An important resource for those in need
During the course of the experience that I had, I spent a lot of time worrying about other patients who would find themselves in this position and who wouldn't know how to go about getting information. I was fortunate, but many people don't have that connection. So I put my story up on the web, and you can read Granny Barb's story at http www.acor.org/leukemia and then click on Granny Barb's story. I have given up all medical privacy. You will find blood work, pathology reports, slides, and the whole story on that website. It is used to train new doctors by some of the doctors at the National Cancer Institute.
In addition, I put up a load of links to good resources for researching your own leukemia, and for years I did that myself. Then I discovered that someone else had a page called Leukemia Links, and we had pretty much the same stuff. So I wrote to the gentleman who was running that page and suggested that we combine them because it was getting too big for either one of us to handle, and that was when Granny Barb joined Art Flako, who is an AML survivor; that's acute myeloid leukemia, and he and I have been working together doing leukemia links ever since. I also started a Hemonk (sp) list on ACOR. Hemonk is a support list for leukemias, all of them, or multiple myeloma and for lymphoma, Non-hodgkins lymphoma. We have subsequently, since we started that list, five years ago, we celebrated our five year anniversary this month, and now we have lists for each of the cancers, we have lists for the lymphomas, and we have a multiple myeloma list as well.
Life after cancer
Today, I have retired from my job, and I don't drive twenty miles in either direction any more. Instead, I have become a cancer patient advocate, and I work with people whom I meet through the lists, to help them make the system work for them. I am a volunteer, I do not charge for my services. My good fortune was to find wonderful doctors. My local doctor is an absolute gem, the other doctors with whom I have worked during the course of this eleven years, have been wonderful, and it makes a tremendous difference, because as a leukemia patient you are dependent on your doctor. It's important to have a good relationship with that person and to think in the same way so that you are comfortable getting the answers to questions. It's also important to work well with the oncology nurses who are in the offices, because they are a wealth of information.
Not a lone crusader
I'm really happy with what I'm doing now I've always been in the helping professions, and it's funny, because don't see myself as earth mother, you know, I don't pick people up and just take them with me. And yet I feel so strongly that I'm not gonna let another patient be as alone and frightened as I was. That, it's kind of made me a crusader.
The other thing I'd like to share with you is that I have written a book It is a book that is written for patients and families so that they can learn about leukemia, even if they don't have web access. It's coming out in the fall, it will be called "Adult Leukemia, a Comprehensive Guide for Patients and Families". And if it stays at the length it is now, it's a big book. There's a lot of information in it. Information about the book will be available at http www.patientcenters.com. And I'm sure they'll start plugging it just as soon as it gets through production.
I can tell wonderful stories though about people who found my website and who pick up the phone and call. The other night at about eleven o'clock, the phone rang. This is 11 p.m. and I'm a night owl, so I'm sitting at the computer working on the book, and a voice says, "Am I talking to Granny Barb?" and I said, yes, you're talking to Granny Barb. Do you realize what time it is?" And the voice said, "I just found you, I had to talk to you, I was just diagnosed with chronic lymphocytic leukemia". We talked for about 45 minutes, and I was able to reassure this gentleman that he has a lot to hope for. The interesting thing is he has joined the CLO list and his diagnosis has changed from CLL to NHL, which is nonHodgkins' lymphoma, he's been getting excellent treatments, but he still calls in, just to check in and make sure that he's touching base.
I think I have pretty well done it. And I hope that those of you who have listened to this will come away with the feeling that cancer is not a death sentence, there is life after cancer, and making use of the resources out there is a big part. Just coming to this site and listening to this tape will help you understand that you can get beyond the cancer and live a comfortable life. Thank you very much for listening.
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( 21 minutes 27 seconds )