Monday, May 3, 2010

History

A recent friend asked if I've ever written a history of events for the blog. I have, but it's been a while. After Lisa asked, it occurred to me that a brief recap of the last three years would be helpful to new readers. I promised to dash one off only to be stymied by other engagements.



When I did find the time to sit and write, I couldn't put any words down. The more I thought about the last three years, the less inclined I became. Should I simply write a time line of treatments with approximate dates? Could my memory be relied upon to accurately convey what I'd felt in the midst of this madness? The answer to this last question is no.



I imagine that I'm not alone in shying away from too acute an examination of events that have shaped such a strange life. It's not that I'm trying to forget, rather I'm too close to what has happened. Time has not stretched far enough giving me the kindness of an altered perception. The guardian of that portion of my memory is encouraging me to let things lie and revisit the topic another day. Knowing me, that day will be in the very distant future.



The thing I should do is go to the beginning of this blog and read all of the entries. I'm not so inclined because I'm not ready to revisit things that seem to have happened yesterday. Since I'm not going to do it, I shouldn't expect new readers to do the same. Here is what I will do: I will write out the sequence of events with a disclaimer.



Disclaimer: This brief writing doesn't account for all of the procedures and treatments. It's more of a highlights piece viewed through a distorted lens.



A brief history:



In October 2006 I came down with strep throat. I know this because It was the week before my birthday when a client, her daughter, and the daughter's two children came in and spent more than an hour in close proximity to me before telling me that they had all just come from seeing the doctor. The mother and daughter had active strep and were taking advantage of that glorious window of opportunity that occurs right after getting a cortisone shot when you have an abundance of energy to do some serious shopping.



I saw my own doctor a few days later and had a culture done and was given a prescription to help things along. I silently cursed these women for being so selfish as to infect a string of people with strep because they didn't have the sense to stay home and get well. I managed to be actively sick on the days that I didn't have to work or be in school. Irony.



I never managed to fully recover from being sick and constantly felt tired and always on the verge of a sore throat. Being a full-time student while working a full-time job was punishing and I'm sure my work suffered on both fronts. I suppose I managed to pull things off because no one ever said anything to me directly.

When the bump on the back of my neck popped up in December, I thought it was stress or a bug bite gone rogue. I saw my GP for the lump on the back of my neck the week of Christmas.



By the time I saw my doctor, the lump on the back of my neck was joined by a lump behind my right ear. My GP of two years, the very same man who always introduced himself at each visit because he could never remember treating me previously, told me he had no idea what the problem was and prescribed antibiotics. He advised me to return in a week if things hadn't cleared up and he'd refer me to an ENT.

I dumped my GP and saw an ENT January 2, 2007. This new doctor reassured me that I was normal and that my lymphnodes were swollen due to a slight infection in my throat. To calm my nerves, he drew blood and had it sent off. More antibiotics.

January 9, 2007, my ENT calls me with the results of my bloodwork. My white blood cell count is just under 200,000 k/ul. He's consulted with a friend from med school who also happens to be a hematologist in town. Arrangements have been made for me to see this new doctor that afternoon.

There's a last minute switch and I see the man who will become my local oncologist. He tells me that I have Acute Lymphoblastic Leukemia. He encourages me to go to a hospital that specializes in treating adult leukemia. This is the point where I can look back and say that he helped save my life by being frank and candid.

I start treatment under the care of one of the country's foremost experts on ALL two days later in Houston. While in the hospital receiving chemotherapy, I learn that I have a rare chromosomal translocation that is an excellent indicator that chemo alone will not save me. History and experience have shown that this translocation means a short remission time followed by an aggressive return of leukemia. The leukemia comes back angry and is usually resistant to therapy that is currently available. This translocation is rare in adult patients and is usually found to occur in cases involving infant girls under the age of one. I will have to have a bone marrow transplant.

26 potential bone marrow matches are found after my brother fails to be a close enough HLA match. HLA is short for human leukocyte antigen and I need a 10/10 match. John is a 2/10. The chances of finding a match are greatest within a population of like ethnicity. I am Vietnamese/Chinese/Irish/English. 26 matches becomes zero. My doctors elect to do a stemcell transplant using cells harvested from umbilical cords. The HLA match doesn't have to be as close and the chances of finding a match for me are greater.

My employer is self insured and rejects the CBT as experimental. My husband is told that they will pay for hospice, but not a cord blood transplant.

I continue chemotherapy to keep me in remission while my husband, family, friends and strangers go to work to get me the life saving treatment I need. They start raising money so that we can move forward. The transplant averages a cost of $500,000.

Three months go by before the denial is reversed. Media and lawyers were involved.

I have a cord blood transplant in May 2007.

In October 2007, I am diagnosed with post transplant lymphoproliferative disease. This is much more common in hard organ transplants. This occurs in less than 1% of cord blood transplants. It is likened to pre-lymphoma. My digestive system is riddled with tumors. There is a mass in my left sinus cavity, just below my eye, and I can't breathe normally. I can't eat or drink without becoming violently ill. By this time, I have lost 6 dress sizes.

I receive Rituxan every month for four months. The tumors disappear.

The leukemia is back in June 2008.

Chris and I are back in Houston for more treatment. The chemotherapy is more aggressive and I am lucky to get into remission with the first round of treatment.

I am fortunate that I'm far enough out from the first transplant to be considered for a second transplant. An imperfect match is found and is willing to donate. There is a greater chance of complications due to the imperfect HLA match. Graft versus Host disease becomes a major concern.

I have a bone marrow transplant September 7, 2008.

October 2009, I learn that my donor's name is Dana. She has saved my life through her selfless act.

Today, I met with faculty members of LSU's College of Construction Management. I am registered to take classes this fall in order to complete the degree that was interrupted 3 years ago.

I am here and I am alive.

Thank you, Dana.

8 comments:

lisa adams said...

Ann, thank you for indulging my desire to learn more about you and your disease. I can't wait until the day you can travel and instead of talking online many times a day I can hug you, and tell you how glad I am you are in my life... in person.

Vilma said...

Hello Ann: I am sorry but this experience has brought tears to my eyes and makes me feel so selfish and caught up with my own personal health care experiences. Hugs and prayers to you as you continue this fight. Love.

Anonymous said...

Ann, I started following your blog when my friend, Erica Murray relapsed 2.5 years ago. I knew you'd had two transplants, but I had never gone back and read your archives. What an amazing story -- and how awesome that your GvHD isn't worse than it is, given what you've been through. (I guess it's independent of the first transplant, but still, it seems like it could be so much worse.)

I'm so glad you'll get to finish your degree, and that your life has assumed a sense of normalcy. What a blessing, and thank you so much for sharing the back story. I'll continue reading and wishing the best for you.

Best regards, Abby

Adrian said...

Ann,

I'm glad I got to know you in college days. I'm looking forward to seeing you and Chris again this Fall. Don't forget, you promised I will pay for lunch/dinner for you two! heheh.

This recent blog is definitely a good quick-glimpse in time to know what transpired since you found out about the Leukemia. Thank you for sharing this with all of us following your blogs.

I will continue to pray for you and Chris every day! :)

*hugs*

Adrian

Ronni Gordon said...

I had bits and pieces but not the exact timeline, so I appreciated reading this. Glad to hear you're moving ahead with school.

Susan Elaine said...

I started following your blog in January '08 after my son was diagnosed suddenly with ALL in Sept. '07. We both followed your story through his transplant March of '08. The saddest thing for us was when you had a relapse right when you guys were ready to buy your house! That was terrible.... My son Scott (age 25) passed away September of '08 but I still follow you and care for you. Scott was worried about you the month he died which was when you had your second transplant. So happy you are doing well and STAY WELL!! Love from afar... Susan Venice, FL

Anonymous said...

Wow, so incredibly powerful. Thank you for sharing that with us. I too was told I was "healthy as horse" and sent away without any blood work taken. It took a visit to an OB/GYN to look for hormonal possible reasons why we could not get pregnant. Surprise- leukemia!

You are truly a warrior and inspiration.
xo-Lea

Nancy said...

You summarized it all so well. It's such a beautiful story Ann. You are an inspiration to so many. Keep well! Love you lots! n