Back when I was first diagnosed with angioimmunoblastic t-cell lymphoma, I did what any of us would do as soon as I had access to a computer. I googled it. I didn’t find much of use, and I certainly didn’t find much that was reassuring. For example, I found this forum and frankly it pissed me off. The discussion affected me negatively; the prognoses always seemed so dire. In fact, that forum is one of the reasons I decided to start blogging about my experience on this site, which I had originally created in order to brag about my pets.


After chemotherapy treatment was over in April, I struggled for about a month with the fear that the cancer would return. I felt like I was left on my own for the first time in months, as I was no longer under the constant care of the doctor and his staff. The slightest itch on my skin or the smallest discomfort anywhere near my neck caused me to panic inside. And the panic was all-consuming. I couldn’t concentrate on anything except for the things I imagined going on inside my body. I felt as if I had no control over my body.

I was reading Robert Penn Warren’s All the King’s Men (1946) and I found a quote that matched exactly how I felt throughout the whole cancer experience:


“… learns that the little stitch in the side is cancer and that he is carrying around inside himself that mysterious, apocalyptic, burgeoning thing which is part of himself but is, at the same time, not part of himself but the enemy….”


When I visited my oncologist in May, a month after my last chemo and a few days after my last CT scan, I expected the visit to be positive. But I left frustrated. I had told my doctor, “When I researched that disease online, people basically said I had about two years to live, once I was diagnosed.” I expected him to scoff but instead he shrugged and said, “I don’t know what to say. It’s a really bad one to have!” It was as if the doctor was afraid to reassure me, even though all signs pointed to remission.


The doctor sent me to another oncologist for a second opinion on whether or not I should do high-dose chemo and a stem cell transplant. He had told me that since I appeared to be in remission, it should just be on the shelf in case of the disease’s return. I told him that I heard that without the procedure, my chances of survival were slim. When I visited the second oncologist and expressed this concern, he actually seemed to agree with me that my chances of staying in remission without the procedure were remote.


I decided against the procedure. I didn’t re-visit that second oncologist. I am healthy and the cancer is in remission and right now I feel that the battle is a mental one – and that battle is all mine.


I returned to my original doctor on July 29th. He was happy to see me doing well. He said it means so much to him to have healthy patients in his office from time to time. He respected and agreed with my decision against the high-dose chemo and transplant. He said that there was a “more than small” chance that I would be just fine. I don’t understand why he seemed more reassuring that day. Was it because I was glowing with health? Did I have a different attitude that day?


Yoga has changed my life. I’m in the best shape I’ve been in for years, and it has helped me mentally conquer the moments of panic I described above. However, those moments come to me more and more rarely.


My pulse and blood pressure are steadier and lower than they’ve ever been in my adult life. I’ve learned to give up the vanity a bit and focus on health. You know what? Doing that makes me beautiful. People tell me I look great, people tell me I smell great. I smile more and I have a happy look in my eye that I didn’t before. Sometimes I think facing illness makes us learn how to take care of ourselves. I feel like I’ve come out of a long hibernation, one that started long before I was diagnosed, before I ever felt sick. Oh! And my hair is growing back so quickly!


I’ve learned not to let myself get angry over stupid things. I’ve learned not to bother hating people. Anger and hate hurt me more than they hurt anyone else.


I have come across so many nurses and medical techs in the last year that have never even heard of that disease.


I believe that even my trusted and beloved oncologist understands that disease as little as I do.


I say “that disease” instead of “this disease” because it is not here.


The next time someone says that “it’s a bad one”?  My response will be: “I’m badder.”


There is life after angioimmunoblastic t-cell lymphoma.


So – on with living!



4 Responses to “AFTER Angioimmunoblastic T-cell Lymphoma”

  1. 11:40 pm, 19 August, 2009 р.
    Friday says:

    Sue,
    We have never met, but I love you and your spirit. You amaze me……

  2. 5:22 pm, 16 September, 2009 р.
    JohnP says:

    I find you so inspirational! My boyfriend was diagnosed in June with “that disease”. He is going to have a bone marrow transplant in Nov. He wants to have it done. I was againist it,but his family and him are all for it. To be honest, I am scared for him. This treatment is literally going to bring him to the brink of death in order to bring him back to life….cancer FREE! Best of luck to you and your journey….I know it is not and easy one….Catherine, RI

  3. 3:24 pm, 30 October, 2009 р.
    Michelle says:

    So happy to hear ur story. I love your site and I love your personality and who you are and how you have chosen to blog about your illness, it has helped so many people im sure, including me. My favorite person on the planet just got diagnosed with stage 4 Angioimmunoblastic Tcell Lymphoma. Grandma is over 90 and normally healthy as can be. She takes public transportation to the grocery store and buys groceries almost everyday on her own and cooks and takes care of grampa…. Doctors are always astounded that there is never anything wrong with her. She is old fashioned and always eats food cooked from scratch and rarely has anything artificial. That is why we were shocked when she was diagnosed with AITL.

    Ive cried everyday for her since she got diagnosed two weeks ago, and yesterday she had her first dose of chemotherapy. Stanford doctors say she is too old for stem cell transplantation. I am hopeful she will beat it and your site has helped so much. I am so glad you refused to do further treatments and that u are doing so well.

    Best wishes,
    Michelle

  4. 11:59 am, 29 November, 2009 р.
    Carolyn says:

    Sue,
    I was diagnosed in Sept. this year with Angioimmunoblastic T cell Lymphoma. Just completed round 2 of chemo. Not much progress to date. I just wanted to say Thank You for blogging. You look to be about my age, we share an attitude and It helps to know there is hope. I too have heard “bad one” however I am not aware of a “good” cancer and I too am “badder” than “this” soon to be “that” disease. Please continue to share your hope with those of us still battling.
    By the way, I am so glad you have all your furry friends for support. I don’t know what I would do or how I would get through a day without mine.
    Wishing you continued Blessings,
    Carolyn

Leave a Reply