Sunday, May 15, 2011

Carefee to chemo to cankles in five years

In the summer of 2005 I was diagnosed with Chronic Lymphocytic Leukemia (CLL), a cancer most commonly found in men over the age of 55. I was the youngest patient diagnosed at the time and the first patient diagnosed through a lymph node behind my nose. I was living in Charlotte, NC at the time, actively searching for a condo to purchase and planning to settle down there for the next several years.

Well, cancer changes things.

Shortly after diagnosis, I was fortunate enough to be offered a transfer by the firm back to Cincinnati. This wasn't something I had asked for and at the time of diagnosis there was no defined plan as to when I would start treatment, but the transfer was a blessing in disguise. It was a way to get me closer to home without me saying that cancer had won by controlling any part of my life. I moved back in September and by that time had undergone a bone marrow biopsy … that's where they drill into your hip bone to take a sample of your marrow … this particular procedure was done without any numbing agents other than a lidocane applied to my skin … it hurt like HELL. Anywho, the biopsy had revealed my form of CLL was very aggressive and upon meeting my new oncologist at the University of Cincinnati we determined I would start treatments in October.

I remember that day. The day we decided to start chemo. It was a Monday and I thought it would be a routine appointment. Rather he proposed I come back the next day to start the toxin flush of my body. I bartered and we agreed that I'd start in a week, allowing me time to wrap things up at work and arrange for a support system from Lexington. After we'd agreed on a timeframe I needed to give blood so that they could test and match to my brother, for purposes of a potential bone marrow transplant down the road. On the walk from the office to the lab I broke down in hysterical tears. It had finally hit me. I had cancer. I would undergo chemotherapy. I was 26 years old.

The following Monday I underwent my first round of chemo. My regime consisted of a "cocktail" of three drugs, Fludarabine, Cyclophosphamide and Rituximab, FCR it was called. In addition to the actual drugs, there were a myriad of pre-treatment drugs I took each day and a specific cycle and dosage of each that was followed to the T. The second day of treatment I underwent a minor surgery to have a "port" installed in my chest, allowing easier administration of the drugs and keeping me IV-free. The surgery was routine, but anaesthetic from the surgery made me queasy and I threw up in the OR as they were discharging me. No rest for the weary, though, I was wheeled up to the 4th floor, same as any other chemo day and underwent treatments. That day was a blur for the most part, but I remember continuing to throw up, I remember the other patients feeling sorry for me, I remember nurses taking care of me and I remember my Mom being there.

The next six months were much of the same. One week of intense treatment, three weeks of recovery. Through it all my friends and family were steadfast rocks for me. I received calls, letters, care packages and so much more. My mom was there for every treatment cycle and in between. She kept my house running, ensured I was nourished (even when NOTHING sounded good to eat), she made my bed daily, she provided a shoulder to cry on, she asked all the right questions of the doctors and the nurses. She was my rock.

I wrapped up treatments in March, just in time for St Patrick's Day, one of my all-time favorite holidays. I went in for another bone marrow biopsy in late April, this time with proper pain medication, and learned at a follow-up appointment on May 15, 2006 that there was no trace of cancer in the sample they analyzed. That meant I was in remission. I remember being in shock. I didn't really know how to react and I didn't for a while. I remember going home, seeing my Mom off to Lexington and letting it sink in before calling any other family or friends.

You see, there's no cure for CLL. In fact, they don't even have good studies on how it's treated if a patient sees it return … most patients are too old at that point to make another round of chemo worthwhile or beneficial and as such they truly die from CLL. Even though I was in remission, it wasn't if, but when the cancer would return. Don't get me wrong, I was thrilled and obviously celebrate this day, but it wasn't the feeling I expected. The first year in remission was the hardest. I was scared every day that I'd feel an enlarged lymph node. I was scared that the cancer would be back and I wasn't sure if I'd have the fight in me again. And, I felt embarrassed for not celebrating my victory as much on the inside as I did on the outside. I have since learned this is normal and through the Leukemia and Lymphoma Society (LLS) have met other young cancer survivors that have truly blessed my life and shared similar feelings and stories.

That said, there's great news that has come out of all of this … and this is why I TRULY believe that everything in life happens for a reason. I met Mike when I moved back to Cincinnati. Most guys would shy away from dating a girl four cycles into a chemo regime, but he didn't. He stood by me and has been there each follow-up visit, x-ray scan and even the every-so-often moments when I think about the cancer returning. Five years later we're married, homeowners in the 'burbs and expecting our first child (hence the cankles). Pretty freaking amazing if you ask me. My brother was deemed a "match" and should my cancer return and a bone marrow biopsy be the best deemed option, that's a huge advantage. And, I became involved with a wonderful organization, LLS. Through them I've been able to give back by sharing my story and through walks and marathons have raised over $20,000 to support their cause.

So, today I celebrate five years in remission. It's not a cure, but it's a pretty freaking HUGE milestone. I still see my oncologist every three months, still have yearly scans and still check myself for enlarge nodes regularly. But I also have a renewed sense that life is good and God is great.

And, if cancer comes back, I CAN and WILL kick its butt again.

**  The fine print ... I wrote this several days before posting and have since welcomed our beautiful baby girl, Anna Elizabeth, to the world.  She arrived just a few hours ahead of this milestone and has brought a new perspective to everything, making me cherish life even that much more.  It was amazing to hear the reaction from the hospital staff as I was giving my health history before and after delivery ... what a true gift life is! **


Ms. Thomas said...

You just make me cry. Thank god for you.

Megan said...

WOW! All that and you're apparently blog posting the day after giving birth. You really are superwoman!

Saralyn said...

Not a good read for a pregnant lady!! I just boo hooed!! I am in awe of you. I think this is a great reminder of how quickly things can change and that life is not always what you think.

Danielle said...

Now that I'm wiping my tears, you are an inspiration and I'm so proud of you. You are so strong and that strength will surely be helpful in motherhood (with all the girl drama)!

Anonymous said...

You are AMAZING! So proud of you and so proud to be your friend :)

Lisa said...

Now you're making me cry. And I don't have pp blues! So wonderful to celebrate your 5 year anniversary w/ little Anna. I think she did that on purpose and already shows what an amazing little person she is and will become.