Friday, May 20, 2011

Scorpacciata

I love to cook and I love to eat good food that I've cooked. There is just no denying it. I wouldn't say I live to eat but I've never been one to turn down a good meal! Since I was diagnosed with type 1 diabetes 24 years ago, I have been pretty conscious about food and a healthy diet. I haven't always been successful but my eating habits improved overall. As time went by, I learned more about healthy eating. Over the past maybe 10 years, I've focused more on organic foods and I even joined a CSA - community supported agriculture - to ensure we were eating fresh, local, organic vegetables.

Now as I learn more about cancer, I'm discovering there is an emerging body of research focused on the environment in which the seed is planted and grows, our bodies being the environment. Consensus is building around the impact on our bodies of the food we eat and the beverages we drink, as we live in this fast-paced culture where foods with heavy and unnatural preservatives abound. Researchers in Cambridge, MA, at the Angiogensis Foundation have launched the Eat to Defeat Cancer Campaign. They have found that certain foods actually starve the microscopic cancers that apparently develop in our bodies all the time. I'll be posting some of those foods here periodically, as well as information on foods currently in season.

The Campaign has enlisted the talent of 3 chefs to guide us to a path of more healthful eating. Enjoy the video below from Mario Batali who explains scorpacciata.




Locally grown foods available in New England in late May include artichokes, asparagus, lettuces, peas, radishes, rhubarb, and spinach. Yup, it's a pretty lean crop, but strawberries are right around the corner in June!

Monday, May 16, 2011

From Sarah and Samantha

My daughter Sarah and niece Samantha sent me this link:

Support MMRF

Wow, wow, wow!!

Yesterday I wrote about the side effects of living with this disease. For the most part, they were the unpleasant side effects. What I didn't write about is a very pleasant side effect - the amazing outpouring of love that I've experienced.  And I've received it in so many ways: gentleness, comfort, kindness, support, and friendship. And then yesterday, my niece Maddie announcing she'll be a participant in the Relay for Life, and today, Sarah and Samantha becoming Warriors!

Geez, now that I think of it, I'd like to be a Warrior!  Probably best if I just work on the warrior yoga pose and skip the Warrior jumping-over-fire and crawling-through-the-mud Dash.  But it sure does sound fun, doesn't it?

Best wishes to Maddie, Sarah, and Samantha!!  I'll be cheering you on!!

Sunday, May 15, 2011

The effect of no side effects

I think I've mentioned in previous entries and in conversations that I have experienced only minor side effects from my chemo treatments.  Some of what I've experienced includes:

- a tingling sensation in my face
- a tightness, like indigestion, in the center of my chest, from the dexamethasone
- jitteriness, like I've had too much caffeine (this is the dex again)
- a high level of activity (thank you, dex) which leads to...
- insomnia (dex, you're making me cranky) which leads to....
- the need for a sleeping pill to combat the insomnia
- very bright red cheeks the day after treatment (dex, you're making me look like the Campbell Soup girl)
- high blood sugar for 24 hours after treatment (dexxxxxxx!) despite my...
- decreased appetite, which doesn't help my....
- digestive issues

These side effects vary in duration and intensity during the 14 days of treatment and subside during the 7 days of no treatment.  I really do consider them minor - at least there is no nausea! - and they are more annoying than debilitating.

This past week, a week with no treatment, I experienced different side effects:

- a voracious appetite (did I really eat that much?  if my scale could talk, it would say, "yes, dear, you really did" and it might even oink at me)
- feeling like my old healthy self again, which is....
- full of energy, so that I could....
- accomplish the items on my To Do lists (yes,that's a plural - one list is never enough)

With the exception of the out-of-control appetite, I like these side effects much better.  I had a very good week and I truly felt well.  It reminds me, though, of how much I liked and miss the 'old kind of normal' and how this 'new kind of normal' kind of.....well, it takes some getting used to.

Round 3 of treatment starts tomorrow.  See you in 14 days, old kind of normal; greetings again, tingling face.

Best wishes to my niece Maddie who will be participating in the American Cancer Society's Relay for Life next weekend!

Thursday, May 5, 2011

Good news!!

Late Tuesday night after updating my blog, I decided to investigate the Dana-Farber website.  I read more about multiple myeloma, the research being conducted at D-F, current treatments, and the amazing doctors that work in the Jerome Lipper Multiple Myeloma Center.  And there, lo and behold, was an email address for Dr. Anderson.  Understanding that nothing ventured, nothing gained.....I sent him an email explaining my high risk factors and asking if he might personally consider taking on my case.  Today I received a response - YES!  He will, he will!  I can hardly wait to get to my treatment today to share the good news with my health team!

I must take this moment to give thanks to the good Lord for this fortunate turn of events.  My prayers - and your prayers - have been heard.  I am humbled and grateful.

To read more about the Jerome Lipper Multiple Myeloma Center and Dr. Ken Anderson, please follow this link:  http://www.dana-farber.org/pat/adult/hematologic-oncology/multiple-myeloma.html

Tuesday, May 3, 2011

Color by number

When I was growing up, I used to love the color by number books!  There was something very satisfying about knowing that I could create a nice, neat, organized picture by following the colors and the numbers - and staying within the lines, of course.  I suppose my Type A personality was emerging even then :-)  As time went by, I was less satisfied with the nice, neat, organized picture because it didn't look real.  So I began to color on the lines and I began to blend the colors.  I like to think it was the beginning of my creativity, flexibility, and spontaneity, which have tempered my Type A characteristics over the years.

Still, when I feel uncertain, confused, stressed, I revert to color by number.  I want precision, accuracy, certainty.  And that's how I approached today's appointment with my doctor.  I walked into his office wanting and asking for my color by number.  This is what I received:

Blood counts - all improving and some are even in the normal range; still anemic, though less so
Myeloma markers - all decreasing, some significantly, which is good
Chromosomes - 3 are abnormal, putting me in the high risk category (already there with the diabetes - and besides, we Type A people say why go low risk when you can go high risk???)
Exercise - get back to it, and build up to hiking (yes!)
Nutrition - solidly good nutrition, drinking up to 2 liters of water daily - and I can have an occasional glass of wine (yes!)

Not the end of my questions, but the end of color by number.

Question:  how do I know when I'm in remission?
Answer:  it depends on the blood counts and the markers

Question:  how long until I get into remission?
Answer:  could be sooner, could be later

Question:  how long will I stay on this particular treatment (RVD - Revlimid, Velcade, Dexamethasone)?
Answer:  as long as it is working as well as it is

Question:  what about stem cell transplant (sct)?  will it be effective for me?
Answer:   research and medicines are changing so rapidly that data is slow to catch up, but yes, let's look at sct.  We'll set up a Dana-Farber appointment.

Question:  can I see Dr. Anderson at D-F? (myeloma dept chair and renowned researcher)
Answer:  maybe, maybe, we'll try.

Yup, no color by number there, but not scribbling with broken crayons on plain white paper either.  I should know by now that there are very few exact, precise, definite answers when it comes to individual health.  Everyone is different, every body responds differently.  Still, I'm quite happy with my health team, my treatment, the results, and the specific, if not precise, answers.

Moving forward, I'd like to let go of my need for color by number.  Sometimes exacting precision needs to be sacrificed in order to be open to possibilities and I want to be open to possibilities.  Maybe I'll try paint by number - those watercolors are much less Type A and may better suit my need for answers.

On a different note:  several of you have mentioned that you do not receive announcements of when my blog is updated.  I'm working on it!  I'll hope to have resolution sometime soon.