Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, July 31, 2009

Everyone Loves a Green Girl

Driving down to Boston yesterday we knew we were in trouble, we knew we had to prepare for traffic, long lines, and wait times: the Red Sox were in town.

Boston transforms from an easy going semi-city to a city full of raucous partiers squashed into too little space on game days.

It’s estimated if 40,000 people go to the green monster for the game, there are 20,000 sitting around at the nearby sports bars watching.

Red Sox fans are infamous for their celebrating.

We left earlier than usual knowing they were in town.

I threw on my “Everybody Loves a Green Girl” shirt and sweatpants for my long, comfortable ride.

There was traffic, but it turns out it wasn’t standstill for tens of miles as we’ve experienced before.

It gave me just enough time to look around Boston with the fresh eyes of a tourist after traveling the same route for over a year now and recognizing: EVERYTHING IS GREEN!

Yes, Everything.

They have the Celtics logo of course.

But the green extended to everything. The benches were green. The poles were green, the fences, the guardrails, and the trash cans. All were green, green, green.

Everywhere I looked. There were building facades that were green. Roofs that were green. All the signs were green.

OF course, who could leave out Fenway, Boston’s “Green Monster.”

How could I have missed this? Green is everywhere.

Boston is probably the nation’s “Greenest City.”

Thank goodness I was hollering loud and proud across my shirt that I was a “green girl” or I may have been ejected from the city.

Bostonians take their sports seriously.

I don’t blame them.

Boston is the only city I am aware of where sports assists in funding the medical system.

To dislike the Red Sox, Celtics, Bruins, or Patriots is like spitting on all the wonderful hospitals and technology in the area.

This is the primary reason my love of B-town sports is growing.

I was in Boston yesterday for a reason though, and it wasn’t to see the Red Sox.

I am sure you are all waiting in anticipation for the big news.

My cancer has returned.

This is a definite.

The specimen from my biopsy did not yield the “Reed Sternburg cells” that a definite for Hodgkin’s, but the surrounding cells, the pattern and extent of the disease and my history all conclude I again have cancer.

I am not shocked, but I can’t tell you whether knowing or suspecting before hand makes the news that I MUST go into treatment again any easier.

Treatment is what I fear most in my disease. I know all to well the adage “if the disease doesn’t kill you, the cure will” is true.

Treatment is scary.

Dana Farber has a plan they would like to execute.

I have options.

I love options.

Dr. Alyea has suggested a combination of chemotherapies which would be started as soon as possible due to the extent of my disease and discomfort I am experiencing.

The preparatory regimen would be Gencitibine, doxil, (form of adriamycin, which I received in May 2006, that is put inside lipids, making the drug last longer.). These medications are less toxic than other options, less toxic meaning: less mucositis and less likely to effect heart function.

Decadron and vinorelbine may also be included. The combination may be tolerated well, but I always hear this.

The good news, the silver lining of this regimen is it could be done in Boston or at DHMC, if they are comfortable.

Dr. Alyea spoke with Dr. Gautier, my former hematologist, at it appears they could be comfortable.

I could receive my treatment while living at home!!!!

I could see Xander every night! I would be able to participate in his life. I could sit at his soccer games. I wouldn’t have to separate from the people I love.

I am, cross-your-fingers & pray-to-God, hoping that this can happen.

I am clearly in need of treatment quickly, and I want/need to be close to the ones I love.

I think this may almost be as important as receiving the very best treatment.

Little is understood about the interaction between emotions and healing.

These medications would be given on days 1 and 8 or 1 and fiften on a 28 day cycle. The variable is based on my reaction to the medications and my blood levels.

After two or three cycles (equaling two or three months), we’ll hope for good response (meaning a remission).

The chemotherapy I will likely take has two regimens. I would receive the lower dose since I am so close post transplant.

Then my donor from my transplant last October will be contacted to donate T-lymphocytes.

The process of donating T-lymphocytes is easier than what she had given previously, and only requires a one time “apherisis” (collection) through a large bore IV.

There is also another combination of chemotherapy that is an option, but I am not to keen on. We could combine gdp, platinum, gymcytobeam, & doxil.

However, Platinum is toxic, not to mention extremely expensive.

I worry about the severity of side effects in receiving this regimen. I don’t think this is the option we will proceed with.

I have emailed Dr. Jacob in Germany.

I am thinking that proceeding with this chemotherapy regimen and then a T-lymphocyte infusion is more of a continuation of therapy that I have all ready received.

I feel with this route, we are trying to use the allogenic transplant and donor’s immune system to it’s greatest advantage.

However, I am concerned that if I proceed in this manner it will close doors that for treatment at the Klinik Im Alpenpark that may be more effective and less toxic.

I have all ready reached out to speak with her. I do not want to run into a life altering decision only to find out later that I have less options because I was rash.

I am also considering meeting with Dr. O’Connor at Columbia.

I have emailed Melissa, my NP at Dana Farber, to possibly coordinate this.

He has come highly recommended by many of my much loved blogger friends.

He interests me as a practitioner. At the very least, I’d like to familiarize myself with him.

I would like to hear how he would proceed with all his knowledge.

I’m running off to NY just to see my good friends from college this weekend.

I could run away to see Dr. O’Connor on a days notice.

I am so lucky I went to school in New York. I’m fortunate to have the great friends and support system I do.

OF course, I am not done with the possible risks for again starting treatment, which range from any little ailment to death.

I will be doing the standard tests in preparation, probably lung function tests and a MUGGA.

A great risk is the return of my graft vs. host disease.

I have been advised to stop my prednisone immediately in prepartion to start chemo.

Luckily, I had begun tapering myself since I was unhappy with the side effects I was feeling.

I felt like a hairy puffer fish.

I was taking 10mg daily.

The Lymphocyte infusion could increase severity of GVHD. This will need to be watched closely as it is severely painful, but on the Brightside, GVHD does posses anticancer qualities.

I left the appointment with the instructions to “start thinking therapy.”

I am thinking, really thinking.


Anonymous said...

Sending positive thoughts and prayers your way.

Anonymous said...

My thoughts and prayers are with you and your family.

Anonymous said...

Hillary, you give it all the fight you have in you girl.....sure hope it works out that you can have treatment at home...there definitely is no place like home...know there are lots and lots of people praying for you and thinking of you.....

Marci Cooke said...

Hillary, I just wanted to say that I look forward to your blogs each and every day. YOu are such an inspiration to me and I love the way you write. I went back and read entries from the very beginning. I just pray I have a better and easier time than you when I get my bmt, which I am dreading and which is coming up very soon...too soon. Marci

Bekah said...

Yay for you and Dr. O! Or at least thinking about it =)

Although I think you should see him first -- lots of refractory folk have GND and do great on it.

I'm on Doxil right now, and the only side effect I have on occasion is mucisitous -- make sure if you start you get the magic mouthwash and rinse 3 or 4 times a day! those suckers can be a bit annoying.

Hope you're well hil,
cheering for you,