Sunday, March 3, 2013

On to the Next Adventure - the NIH!

Hi Everybody, Whew!! What a long, long week. Richie and I went to the NIH on Sunday, February 24th. Today is Saturday, March 2 and I feel like a month has passed in the last week.

We arrived in DC and were picked up at the airport by the always fabulous Sue!! Sue and her husband Rich were our hosts for the overnight stay. Sue is my sister from another mother. She made us feel so at home, so loved in their home in Washington! We came back from the airport to a glass of wine, pork tenderloin and the Oscars!! We all had so much to share and talk about, but after dinner we all fell fast asleep.  It was a hard night, both Richie and I tossed and turned in anxiety and worry about the next day. 

We arrived at the NIH the next morning at about  8:15, an hour earlier than they recommended, but with the DC traffic we decided to leave with plenty of time necessary for any delays. Getting through security and admissions were taxing enough, the rest of the day played out much as expected. I had labs drawn, waited, met with the first doctor, waited, more labs, waited, and finally after a long time, met with two of the doctors from the research team. I was offered a spot in the trial!!!! I felt very triumphant, and then we waited a bit more. By the time we left, I was so exhausted and tired from the process that I was just relieved to leave the NIH campus. 

As TJ had warned me, the campus was HUGE! And I am not exaggerating. Honestly, the entire DC area is just jam packed with humanity. I was excited to see the Capitol and the Washington Monument when we arrived the night before as I have never been to the DC area, but the morning drive to the NIH was overwhelming (read: traffic).  I am a homebody and small town girl by this point in my life and as much as I am excited about taking some time to enjoy the DC area, I found every thing to be overwhelming. 

Mid day Monday, we received word that the second leg of our return flight (STL to KC) scheduled for Monday night was cancelled because of the weather EXPECTED to arrive late Monday night in Kansas!!! AAARRRRGGGGGHHHH! I still have not developed any patience for these kinds of delays. I know, I'm slow about some things! I relied on Richie to take care of everything. And he did, but he was very anxious. Work just piles up, doesn’t go way, right?!  And Monday was exhausting. I cannot remember a harder day, except maybe the day I woke up from the first surgery. That was a hard day.

We made the first leg and spent the night in STL at Kaki’s, always an oasis in a desert. We had a wonderful lunch with Mom the next day. Richie rebooked our flights two, maybe three times that day. We had dinner with all the Murphys in a five mile radius and then John took us to the airport at 8pm or so. We got to our house at about midnight Tuesday, twenty-four hours or so after our original schedule. Home to Charlie, whom I had missed terribly. How could he survive without me?

I felt that I needed some time to really think about what accepting a place in the trial means. It may seem straightforward to some who want me to jump at this chance, but for me, I needed a good rest and then a chance to have a good conversation with Madeline and Charlie about how this would play out.  

The most important thing to remember is this study is an experiment. I will be involved in an experiment. I believe that I am doing a good thing. Firstly, I am giving my blood, my cells, my experience to this experiment. Secondly, I am hoping that if this drug doesn’t give me respite from my cancer, that the information that the NIH team gathers from it will be useful and helpful to these and other scientists as they work to try and find a cure for cancer - all cancers. The best I can hope for is that my cancer responds to the new drug and stabilizes. The worst is that it doesn’t work for me, but I still have options.

AND I am hopeful still. How can I not be? I have everything to live for! I have Richie, Charlie and Maddie! I have Mom and the Good Guys, my Backus’ and all my friends.  I want to see all your faces again, and you know how stubborn I am?

I also found out I had a UTI once I arrived home. I am taking a lovely antibiotic right now and have been feeling better day by day. Richie is off for a cross country ski adventure with his brothers and a few good friends. Charlie raced today, had a good experience and seems happily exhausted, or exhausted but happy. I am not sure which one, but I love that he’s happy. 

Mads will be home in less that a week for Spring Break. And then Sunday, March 10 I will return to DC to start the study. I will spend two days in the hospital at the NIH. I will be home on Wednesday, March 13. I will go the NIH regularly, once a week for three weeks and the fourth week off. After two months, I will know if the study team thinks the trial drug is working for me. I can manage two months, easily. 

That’s my story and I am sticking to it! Aren’t I original? I have always said that it is so much easier having a plan. Often though, having a plan means that I am on chemo, but it is still much easier. I feel a great sense of relief knowing that I have a plan. 

So, thanks again, all you darlings!!! You cannot know how happy I am to have you in my corner. I think about all of you and pray for us all every day. As long as you, my caretakers are good, I am good.  Spring is coming and that will only make life more interesting.

Love you,