More aggressive NHL, more aggressive therapy.

While on vacation one of my great doctors called me to give me the news that my non-hodgkins lymphoma was of the more aggressive type and they weren’t sure the standard RCHOP therapy would do the trick.  So, beginning round two I will go to EPOCH-R, which is a 96 hour continuous infusion of the same basic drugs, which a few more thrown in for good measure.  The idea of continuous infusion as I understand it is to allow the medicines to stay in my system longer, and therefore kill more of the cancer.  The continuous infusion is a challenge with my children, who like to hug and crawl all around me (and I like that too by the way) but we will do what it takes to kill this bitch once and for all.  Once again I am mindful about the fact that this therapy is relatively new and 20 years ago, I wouldn’t have had this option.  Thank you science.

Why Lymphoma?

Why’d I get it?

There is no known or agreed upon cause for lymphoma.  None that I can find—barring one possible and unproven link to a pesticide used on farms decades ago, and for this suburban girl, that isn’t really a possibility.  And Just for the record, I’m otherwise very healthy.  I’ve never smoked, I drink rarely, I am forced to exercise by a close friend who is both a lawyer and certified personal trainer, and my love for tennis keeps me running around enough to make everything work.  My worst vice is a chocolate chip cookie that the husband makes, and nobody is making me give that up yet.  So why did I get it and what can I do to prevent it?  We don’t know, but it’s here, and it stinks, but we do know what we can do to get rid of it, and for that, I am grateful.

Chemo and Vacation? Doing it all!

August 3rd:

Deciding to get on a plane two days after chemotherapy with husband and two littles in tow was a questionable decision.  I didn’t really know how I’d feel.  Do I have to worry about all the germs (yes, but not really).  Should I sit near the bathroom in case I felt sick (yes, but didn’t need to).  Should I play the C card and ask for pre boarding?  I did, and shouldn’t have,…

The Beginning…..

July 25, 2011

I am a cancer patient.  It doesn’t define me, but for the next 12 weeks and likely for the rest of my life, it will alter the way I see and live in the world.

I am also a mother of two wonderful little girls, a wife of the best man anyone could ever hope for, a daughter of the most positive cancer survivor you’ve ever spoken to,  a sister and aunt to some of the best cheerleaders around, and I have somehow managed to hold on to cherished friends and extended family who sustain me on bad days, and bring me soup and tell me funny stories when I need them.   As a bonus, my career and vocation allows me to advocate for some of the very organizations that are helping me cure my disease.  I am blessed in so many ways.

But I still have cancer, Lymphoma to be exact.  Large Diffuse b-cell lymphoma to be more exact.  Stage 2a.  Pretty good, they say.  In fact, the first doctor that found it, a kind and thoughtful gastroenterologist told me when he saw the ct scan “well, it looks like lymphoma, but if you’re going to have to have cancer, that’s the one you want.”  Cold comfort when the room is spinning with the C word, but as I’ve learned more about the world of cancer, he is so right.

The diagnosis:

For the last year, I’d been having stomach pains, went to a great internist (doctor #1) who sent me to a great aforementioned gastroenterologist doc (doctor #2), who ordered a colonoscopy….clean, whew!  An endoscopy….clean, whew!  And finally, a capsule scan of the entire intestinal system, gulp, gulp, wait,….. clean whew!

Thought we were out of the woods.  But the pain was still there.  So Doctor number two sent me to a rheumatologist (doctor #3) because I still had unexplained inflammation markers in my blood.  She found nothing to treat.  A month later, the pain came back, and I went back to gastroenterologist, who ordered an immediate ct scan.   And that was they day they found it.  July 22, 2011.  In my spleen, and an adjacent node.

My husband, my hero, my knight and my everything arrived at the doctors in 15 minutes flat from some work meeting he flew out of and hasn’t really left my side much since.  He still works, because he loves his job and the people he works with, he needs the outlet, and let’s face it, his health insurance, which is excellent, is critical right now, but more on that later.

Through some lucky connections and a few even luckier cold calls, we got in touch with some of the worlds experts in Lymphoma.  Dr. Frederick Hagemeister at MD Andersen in Houston (doctor number 4) , Dr. Windom Wilson (Doctor number 5)  at the National Institutes of Health, and the most talented and calming oncologist you’ve ever met, Dr. Fred Smith (doctor number 6)  whose practice is in Bethesda, Maryland, 15 minutes from my home.   Several days of scans, tests, biopsies and more cancer inducing radiation than you’d wish for, we had a plan.

With all great minds in consensus, it was decided that I would start on a regimen of chemotherapy for 18 weeks known as RCHOP.  RCHOP has been a standard of care for many years and cures many many people.  It is also fairly standard to insert, via surgery, a Port o cath  into your chest as an entry point for the chemotherapy drugs.  This requires surgery (doctor #7) and while I did do this before round two (with a surgeon with the best bedside manner ever), I chose to go straight through the veins route for the first round so we could get this party started.  When you have cancer, and you’ve got a plan, you just want to GO Go GO!

So On August 1, (also my husbands 43rd birthday) I started my first round of therapy.  Two days later, we were off to our planned family vacation in sunny California.  My doctors were a bit shocked at the choice, but also felt good that I felt good enough to go.   And here is where the blog begins: