Living With CML: Under a rainbow........

Is it a safe place, under a rainbow? What about a double rainbow? If it was, guess where I would put ........... well, everyone I know!

We have just come back from the most incredible vacation... A week on a houseboat in the Amazon Jungle, then two days in Quito, Ecuador, touring that beautiful city with a guide that was so passionate that it was easy to get to love the place in those two short days. Then off to the Galapagos Islands we went, for an eight day cruise around those amazing islands, seeing many incredible creatures and enjoying the ocean, fresh air and sparkling night skies.... Then three days in Lima, Peru, across the Andes Mountains to the gorgeous town of Cusco, the Sacred Valley of the Inca's and .... yes, Machu Picchu! 28 days of incredible beauty, wonderful people, fascinating creatures, delicious food, flowers and experiences. Unforgettable. Link to that travel blog: http://galapagobaggs.blogspot.com

and to some of the photos: (see the folders on the left)

http://s761.photobucket.com/albums/xx257/GalapagoBaggs/

And all through this time, cml travelled along with me, but mostly at the back of my mind. I found very little need to talk about it at all. I honestly think that deep down, I really needed a good long break from this cml thing - and I mostly succeeded. It was interesting to realize that it was during our wait in Miami for the connection flight back to Atlanta, that that is when cml came back again, dates started running through my head and started feeling the need to catch up with everyone and the latest cml news. I am so incredibly fortunate that Steven is doing so well that putting this all on hold was even possible.

During my catch up after we got home, I found this blog entry on Matt's Blog. It's about approaching a stranger who obviously has cancer, even though you don't know them. Under what circumstances is it right? When we were on the ship in the Galapagos Islands..... well, this is my latest experience on that subject........ I overheard a small group of people discussing a lady who had just joined the ship - she had had her last cancer treatment on the Monday and here it was Wednesday and she was on board for a vacation. They debated whether it was right for her to do this, whether she was wise or sensible and how to react to her. In all honesty, maybe I would have been one of them a good many years ago, but these past few years had taught me some lessons and now I was slightly ticked off at this discussion.

It was not long before a tall, elegant lady caught my attention - she had the most glorious smile, was tall and her eyes twinkled. She seemed to ooze life and laughter and everyone around her broke into smiles as she almost bounced along the deck. And then she removed her cap, running her hand over her bald head as if she still had a full head of hair. This was her.

Oooooh, my feet started tapping as they wanted to go over to her and say something - anything. To tell her that......well, that I see that she had/has cancer and that........ what? WHAT?? She knows what she has/had........ did she really need me to come and tell her my version of what I saw in such a short time while she was on a probably much needed vacation to one of the most wonderful spots in the world? Did she need my sympathy or 'understanding'? Did she need to hear the story of Steven and how I deal with it? Did she? Nope... Not at all.

I am so incredibly grateful that I sat on my feet and put cottonwool in my mouth for the next couple of days. And then one morning, I found myself sitting next to this bubbly, bouncing, vibrant lady with the never-ending smile, on a the edge of a small inflateable dingy on the way to one of the islands, and we laughed and chatted and laughed some more at some stupid fish jumping out of the water right into the beaks of the swirling masses of birds above. She was funny, interesting and having a great time out on the water and we really had a good and fun ride. After that we spoke a good many times, laughing, sharing what we had seen during the day and just enjoying the islands.

We did not share any personal information, not even our names, until it was time to leave the ship. She had a calendar that the crew had given her and she was laughing because it was a 2009 calendar and well, the year is almost over! I called her "Calendar Girl", she laughed and said that her name is Laura and we hugged both hello and goodbye. The last I saw of her was when I called after her disappearing figure at the airport, "bye bye, Calendar Girl!" and her tinkling laughter trickled around the corner back to me...... still makes me smile.

Well Laura, you taught me something. You taught me, as a good few other have too, that cancer is not the main part of any person by a very long way. Your character happened first, your smile, that twinkle in your eye and your zest for life. Cancer is just a small part of you - small enough that it was hidden by all the rest of your lovely personality. You taught me that even though I have 'a story', your privacy is more important and that by respecting that, I gained so much. I saw a part of you..... a wonderful part. Thank you!

I have also learned that I can and do see past cancer to the whole person. This is something I never thought could happen so easily. I know I do this with Steven and some of my internet friends...... he is doing well enough that cml really is not the first thing I think of when I see or think of him. Even my Robo-scan has become lazy and I really see my son first and foremost - just as it should be. But it was a really good surprise that I can and did do this with someone that I literally just met and who's side effects of the treatment were very obvious. I love knowing that I have grown enough that I am no longer part of that group wondering how to react to someone who has cancer.

And just a day or two after getting home, it was time for the PCR test kit to be ordered again. Sigh. It arrived, Steven's blood drawn again on Thursday last week and now for the wait again. I have been catching up, as I said, with some of the people I follow and one that really has my attention is Hans' Blog. Both Gleevec and Sprycel have stopped working for Hans due to the T315 mutation, and he is off onto a trial and hopefully going to be able to avoid a transplant. The wonderful news is that he has a sibling match which is just great! Visit his blog and send him wishes and hopes... All the best Hans - I will be waiting to celebrate great results with you all!

Now I know that everything is going well with Steven, but what would one of my blogs be without a good foot stomping from me? Maybe it's because of that pcr kit and the waiting, maybe its........ well...... Here it is. I don't want Steven to have a 'good few other medications' to fall back on if Gleevec stops working..... I don't want him to have to go to trials, or to have a perfect match for him if he has to go to transplant one day (well of COURSE I do want all these!) But I want him to just be ok the way its going! I want him to never have to worry again, I never want to worry about how I would deal with him having to change his medications and deal with new parameters, tests and side effects. I want to see this burden lifted from him and Laura and I want the road to be smooth from here on out. I want to stomp my feet in a hissy fit and absolutely insist that this child of mine (and my girls) be absolutely ok.

There is so much beauty in the world, there is so much good...... may you all be at the end of a rainbow....