Myeloma Today: Please tell us a little about your life before myeloma.
Terry Herman: I had an average life. I am married. [Editor's note:Terry is married to Howie seen above with her.] I have a son who is going to be 33 and a daughter who is going to be 31. Both of my children have children of their own. I have a business – I own a travel agency with a partner. I've always thought I was extremely healthy. I exercised, took all the right vitamins and antioxidants, and ate all the right foods. I used to laugh because my husband Howie was always running to the doctor, always thinking that something was wrong with him. I used to say, "All you have to do is take care of yourself!"
MT: When were you diagnosed?
TH: In April, 2002, I had a stint in the emergency room because of some pain in my side. It turned out to be irritable bowel syndrome and acid reflux. But the blood tests revealed a high protein level. Of course, at the time I didn't understand what that meant. I had an endoscopy and a colonoscopy. Then I got pneumonia, followed by bronchitis. My family doctor had been monitoring me very closely ever since the elevated blood protein level was discovered and he told me that as soon as I got better, I needed to go see a hematologist. He was hoping I had MGUS and had discussed it with me but I just wasn't paying attention. I didn't even bother to look up MGUS on the Web so I never realized that this could be something serious. After all, I felt healthy! But my family doctor just wouldn't let the matter drop. When I got over the bronchitis at the end of August, he insisted that I see a hematologist.
The hematologist wanted to do some blood work, a 24-hour urine collection, a bone scan, and a bone marrow biopsy. I said, "I am going to humor you. I'll give you some blood and all the urine you want. You can even take x-rays. But as far as doing a biopsy, that's out of the question." When the hematologist called me with the test results, I happened to have been playing around on my computer. He said, "You definitely have to come in for the bone marrow biopsy." I said, "What are you looking for?" He said, "I am not looking for anything. You have myeloma." So of course I type in the word "myeloma" into the computer and the search comes back "cancer of the plasma cell." I told the doctor that he had the wrong person. This couldn't be! Yes, I was anemic and I had a benign protein in my blood, but how can that be malignant? He tried to explain it to me but at that moment I was so stunned that there was no way I could deal with this kind of information. This is why, in my opinion, you always need to bring someone with you when you go see a doctor. It's important to have someone else there to listen to the information. A patient really can't process it all.
MT: What did you do?
TH: I called my husband. I kept saying, "I don't understand. The doctor is telling me that I have cancer. He must have thought he was talking to somebody else. Or maybe he mixed up the charts…" I couldn't get it through my head. My husband told me to call our family doctor. I received the diagnosis on Friday, October 15, 2002. Our family doctor was on vacation but called me back and spent at least 45 minutes trying to calm me down. I spent the whole weekend crying. I though I was a healthy human being. This was a very rude awakening.
I gathered my family. I said, "Listen, I just want to tell you all that I am going to be here for a while and I am going to take very good care of myself. I don't want you to treat me special. I want to be who I've always been. I want to be your mother. I want to be there for you. I don't want you to think that you can't talk to me because I'm going to die next week. That's not going to happen. My disease is in the early stages and every day the doctors are coming out with something new." And I am looking at my kids and they are sitting there stone-faced, and my son-in-law and daughter-in-law are crying. I said, "What's wrong with this picture? My children aren't crying. My in-law children are crying!" That's when we all laughed.
A cancer diagnosis is very hard to come to terms with. You really don't know where to turn. It would be very difficult to have myeloma and to have to deal with it on your own. We all need help to get through this.
MT: How do you cope?
TH: I have a great support system. I have a husband who's been just unbelievable. His mother was sick for many years and I should have known then, as I watched him take care of her, that I was going to be so lucky some day, that he was going to be there to take care of me. And he does. He makes sure I go to the doctor, and he comes with me. He's never missed an appointment. My daughter has also gone for doctor visits with me. I can email my hematologist with questions and get an answer from him within hours! We discuss my blood levels every month. He is trying very hard to keep me stable. And my family doctor still calls me all the time just to see how I am feeling. I have two wonderful doctors who work hand-in-hand.
A couple of months ago, I attended to my first support group meeting. I don't think that I could have gone earlier because I just wasn't ready. But now I find it very informative.
And I have found out that my friends are true friends, not just acquaintances. They are there for me and that is so important. They call me to before my treatments, they call after. They offer to take me to my doctor appointments, to sit with me during treatments. They browse the Internet doing research – when VELCADE™ received its FDA approval, I received so many calls from friends making sure that I had all the information. It's just unbelievable. I feel so loved and protected by everybody.
MT: How did you learn about the IMF?
TH: I found the IMF on the web. I ordered the free InfoPack and signed up for this newsletter. Your educational materials have been most informative. They help me to ask the right questions and communicate better with my doctor and that's very important. I think that people need help learning how to communicate. They need guidance. These are things I never needed before because I had never been sick before the myeloma. By the time a social worker came up to me in the hospital to ask if there was something I needed, I had already had a lot of help and information both from my doctor and the IMF. I had gone through every single page of the literature I received from the IMF. I felt that I knew what was going on and had a better view of where I stood. Even now, once every couple of months I still take out my health folder and re-read all the books because at each stage I absorb different information, even from reading the same text. As I've progressed since the diagnosis, I have been able to absorb more and more information.
MT: Why did you decide to participate in the IMF Mail For The Cure (MFTC) campaign?
TH: For years, I have been involved with a number of different causes. I lost a very dear friend on 9/11. His wife started a foundation for him and my husband and I have been very involved with it. And everyone has been extremely generous. Even my neighbors – and I've been living here for only 2 years – have donated to this foundation. Also, for years I have supported the American Cancer Society – my mother had breast cancer, as have several close friends. And my husband and I donate to several charities that my neighbors are involved with. So when I learned about the MFTC campaign, I thought that if I can donate to other causes, why shouldn't the people I know donate to a cause that's so important to me?
MT: How did you proceed?
TH: I sent in my order form to the IMF. The following week, I received a packet in the mail that contained hints on how to write a letter. So I wrote a letter and brought it home to my husband. He thought the letter was very good but I was concerned that I was asking for too much. I don't like to put people on the spot. He pointed out that the IMF does not disclose the amount of an individual donation so contributors can choose to give any amount they wish. Even if they send in just $5… that's $5 more than the IMF would have had otherwise. I started to figure out whom to send the letters to. First, I was just going to send them to my close friends, knowing that they would rally around me. But then I took out my address book and went through it from one end of the book to the other and sent letters to everyone I knew. And every night I would come home and find messages on my answering machine from people saying that they wanted to participate. I even heard from people who did not receive my letters but had heard about them from others. Everyone was offering to contribute. A company I worked for 16 years ago sent in a check for $500! I was overwhelmed that they should think enough of me to contribute to the IMF. The response has been unbelievable. I am overwhelmed with phone calls and the love and the concern and the offers of help. I know that these people will be there for me forever.
Gradually, I am finding it easier to cope with my diagnosis. I've come to understand that my health is in my hands, that I need to take it seriously, and be prepared for whatever comes at me down the line. I feel so lucky that everyone is there for me. I don't know where I'd be without my family and friends.
Note: To date, Terry Herman has helped the IMF raise over $5,400 through the Mail For The Cure campaign.