Sunday, May 11, 2008

The Cancer Story

When people find out a person has or has had cancer, they get nervous. They don't want to "intrude" but they are full of questions. How did you find the cancer? Aren't you young for this? How long have you had it? Did you lose your hair? What is the prognosis?
For me, I think the story begins in January 2003. I had a horrible cold, which developed into what I thought was bronchitis. Of course, being raised to be tough, I didn't go to the doctor. After a week I was feeling better, but noticed that what I had thought were swollen glands in my neck, had not decreased on the left side. I continued to monitor
this bump, making jokes and calling it my lymphoma friend. Little did I know that's what it actually was! I had friends who were nurses feel it, and of course they all said to go to the doctor, which I still didn't do! Finally, in early June I was forced to the doctor to get my allergies checked or she wouldn't give me new prescriptions!
I knew this was something serious when the doctor said I couldn't wait 3 weeks for a CAT scan. Like most teachers, I wanted to wait until school was out for the summer to do all my appointments! I had the CAT scan the next day and was told a few days later that there was "activity". Don'tcha love that word?! My GP sent me to a general surgeon who was going to "explore the mass". I still didn't quite realize that they thought it was cancer, until I said to the doctor, "Isn't that a nice term for biopsy?" and he finally used the word!
The doctor was great telling me it was
Hodgkin's Disease when I woke up in recovery. He was very gentle, had already spoken to my family in the waiting room, and explained about the different kinds of lymphoma. If you have to have cancer, this is the one to have. Very high remission rate!
BUT... I am one of the exceptions! I did the standard ABVD chemo plus radiation treatment. It went pretty well, the radiation really burned me up, but the chemo was fine.

In February 2005, a year after I was told I was in remission, spots started appearing on scans again, and I was sent to Dana Farber Cancer Institute in Boston for an autologous bone marrow transplant, also know as a stem-cell transplant. Autologous means they used my own bone marrow, after extreme radiation. At first it seemed like it worked, but it didn't; now sludgy stuff was showing up in my lungs on the scans! I was hopeful that it was "just" fungus, instead of cancer, but a lung biopsy told us it was cancer again. BTW, of all the things that have been done to my body in these 5 years, the lung biopsy was by far the worst and most painful with the longest recovery.
Now I was switched to a new doctor at Dana Farber and got prepared for an allogenous transplant, from a donor. Of course you first have to find a donor, and this is not "House"! My only potential match would have been a sibling, and she didn't match. We waited about 6 months until a donor was found. I did not feel or act sick during this time, exept after I had the maintenance chemotherapy I would be a little weak for a few days.
The transplant took place on October 5, 2006 and I went home the next day! This picture shows me w/ my "bag o' blood." It's just a simple transfusion, no pain at all!

The transplant was a success, so I have been in remission for over 18 months, but now I have something that can be as lethal as cancer, Chronic Graft vs. Host disease. Basically, the donor bone marrow has killed off the cancer, but does not yet recognize its new host (me) as its home, so it is now fighting my organs. This is something that will just take time, and the goal is to keep it at bay and keep me alive until the new cells realize they are in a permanent home!
Of course there's lots more information about medications, treatments, clinical trials of new treatments that I've tried, my hair (which is what so many people care about) how it has effected my family and my overall quality of life, etc. I can address those things in future posts if people have any interest.

14 comments:

Terrie's Lil' Piece of Serenity said...

Elizabeth, Thank-you very much for sharing your story. I'm so sorry for everything you've gone through. You are sure an inspiration. I pray for you daily.
Hugs, Terrie

PAT said...

Good morning, Elizabeth. I came here, via Terrie's blog.

Thank you so much for sharing your story. My husband had surgery for Prostate Cancer, two weeks ago, tomorrow. He's doing fine and no further treatment is necessary.

Hope you continue blogging and visit the back porch!
Pat

Charlotte said...

You are such a brave lady. You have been through so much. The transplant you had in 2006 was on my birthday. I am praying for your complete recovery.
Hugs and blessings to you.
Charlotte

ohiofarmgirl said...

wow, you do have a wonderful story of grace and hope.I currently have two friends who are battling breast cancer and seem unaable to share about their cancer as you have. You are a very couragous person. I look forward to getting to know you. Dianntha

Feathering My Nest said...

Dear Elizabeth, Terrie told me about you. I am so sorry for all you have gone through and still are going through. I will pray for your complete healing.

Kathi

Picket said...

Hello friend....Terri sent me over from her blog....I am known to most as Picket from RMS..that is where I first met Terri...I must say I commend you for your bravery with all you have endured...I will call you name when I pray that God touches you and that your body will begin to accept it's new parts...I hope you have a good day oday and please feel free to come by and visit any time...welcome to blogland my friend!

Neptune Beach (Susan) :) said...

Hey EO!!! What's up. I loved this first story that I was able to read today. You are great for sharing this information and I think you are BEAUTIFUL!!! Great pictures! I've gotta go cook dinner now but will check in again. I like blogging..it is easier for me than some of the other ways of staying in touch. Plus you learn more. I'm having trouble with my computer at home - can't download photos from my Cdrive to a disc on my Gdrive...pooh..:)Susan

beddow said...

Hi Elizabeth! I also came here from Terrie's blog. Thanks so much for sharing your story. My mother died 22 years ago after having breast cancer. I think I let the word scare me so. I have had lots of we are watching, having to go back and one biopsy. I really admire your being so open to share your story. You are a survivor and I admire you so.

The Tea Princess said...

Hi Bogie,
Thank you for sharing your story. You have been going through such a difficult time, but you are coming out stronger because of it.
I'm glad to call you friend.

Sarah

wendlou said...

Elizabeth, Thanks so much for sharing your story. I would be interested to know where this journey has led you. Would you have come to know the girls at the cafe had you been teaching? How has it changed you? Do you think you would have formed the bonds with family and friends? What about your crafts etc. What do you enjoy doing now that you didn't do before? Seriously praying for your complete recovery! I would like to kick some cells butt! You are truly an inspiration Lizzy!

Rela Pantaleon-Manigsaca said...

I had to find out what you had... my Dad had AML and being 60 years old and in the Philippines, the oncologist did not give a good prognosis. She did not even recommend Bone Marrow transplant anymore. Anyway, Dad endured 5 cycles of chemo in 8 months before he passed away. I pray for continuous healing for you, my dear evil overlord!

BPOTW said...

What an encouraging story: not only in the prognosis and your healing but also your attitude. I pray that those new cells realize soon what a great home they have!

Thanks for sharing your post on Best Posts of the Year!

Hot Tub Lizzy said...

Your Battle is a courageous one. I am totally in awe of you.

Kate Coveny Hood said...

Your humor and courage are inspirational.

My mother is a cancer survivor and for the past year, she's battled both lunch and brain cancer. She had breast cancer 10 years ago and enjoyed 9 years of remission. We're all amazed at how far cancer research has come in the course of those 9 years. It's the only reason that she's alive. And that's really the focus, staying alive (and keeping a good quality of life) while waiting for even better therapies to be released.

Thank you for sharing your story.