It's time to Vote, but not on a Candidate!

I recently joined the Digial Health group on LinkedIn, led by Paul Sonnier, who has amassed a huge group of followers on Twitter and LinkedIn. I have found it to be one of the best places for bleeding edge health technology news and great discussions! Paul recently posed the question, "What is the biggest human benefit derived from the use of digital health solutions?" There were five categories to choose from: Disease diagnosis, disease prediction (especially genomics), disease management, disease prevention and reduced radiation exposure (imaging). The winner by a fairly wide margin was disease management, which garnered 49% of the votes. Coming in second? Disease prevention with 31% of the vote.

The discussion that accompanied the poll was very rich and worth checking out. My vote was cast for disease prevention. In my mind, if we can finally give individuals the tools to more proactively manage and maintain their health, we won't need to focus so heavily on disease diagnosis. What do you think? Which item would you have chosen?

For an additional reference, check out this blog written by Paul about the results of his poll:

http://popperandco.com/2012/07/poll-results-what-is-the-single-greatest-health-benefit-afforded-by-digital-health-solutions/

Relief

Relief is a common feeling – one can be relieved that they make it to work on time when the traffic is bad, or be relieved when a child arrives home safely 15 minute after curfew. We can get relief from a headache with a Tylenol or Advil, and relief from hunger by eating a meal.

But on Friday of last week, I learned what relief really feels like. It’s an overwhelming feeling that impacts every cell in your body – it’s like the world’s biggest sigh; or the removal of the heaviest load you have ever carried. As it passes over you, it incites you to cry huge tears of joy, and then makes you want to lay down on the floor to be absorbed into the earth. It is a freedom that I have never, not once, in my 51 years on this earth, felt so intensely.

Last Friday morning I had blood work and CTs of the chest, abdomen and pelvis. This was in follow up to scans 8 weeks ago that showed some abnormality in my right lung, which the radiologist and radiation oncologist suspected was the remnants of an infection, but they could not rule out an underlying malignancy. While I had a gut feeling that things were going to be good (because I have felt so good and have been taking pristine care of myself), I had received several “signals” throughout the day that perhaps that would not be the case. And so, as Bill and I sat in the waiting room for the physician to call us back, I could not help but be exceptionally worried, to the point of hands shaking, stomach twisting, room spinning.

But relief was mine when my nurse practitioner came through the waiting room and stopped to tell me on the sly that my physician was going to put me in a room to “tell you the good news, your scans are completely clean.” As the words left her lips, I can’t do justice to describe the intensity of relief I felt. This is a moment that I will hang onto for the rest of my life! It’s the perfect opposite of the moment when I heard the words, “It’s cancer.”

I am not naive enough to believe that this is the end of my journey – in fact, it is the beginning of the hardest part – survivorship. The constant temptation to wonder if something is going on, or if the cancer is back is sometimes hard to ignore. But I will take this victory with gratitude and in it find the strength to continue my efforts towards perfect health.

What Would You Do With a Little Feedback?

Admittedly, it has been a long stretch since my last blog. In a nutshell, I’ve spent the last 4 months healing from the many side effects caused by the Radiation and Chemotherapy treatment I completed. But I am happy to report that I am feeling great, eating extremely “clean,” exercising nearly every single day and ensuring that I get ample sleep. From all the reading I’ve done, my best bet is to keep my immune system in excellent shape, and all of these things help that to occur.

But there are mental side effects too….I asked my physicians and nurse practitioners – “What can I do differently to make sure the Cancer doesn’t come back?” Those of you who know me know that I have been a very healthy person – I have always exercised, eaten really well, and tried hard to manage my stress. And their answer was “We don’t know, since we don’t know why you had this kind of cancer.” Given my action-based, over-achiever personality, this did not sit well. Surely there is SOMETHING I can do other than wait, feeling like a ticking time bomb, between every check up and CT.

Enter the FitBit. It’s a little sensor that you wear on your body day and night and it can tell you how many steps you are taking (10,000 per day is the goal), how well you are sleeping (your sleep efficiency score), how many calories you are burning and taking in, and how many flights of stairs you’ve climbed.

I ordered the FitBit after attending the Institute for the Future (IFTF) conference in San Francisco a few weeks ago, where I was blown away by some of the self-monitoring technology that is close to becoming a reality. Blow into you tube connected to your iphone and see if you have an infection? Yep, it’s in the approval process with the FDA. Use your iphone camera to scan a rash and then have it diagnose it for you? Yep, that too is at the FDA for approval. Take a personalized pill to ensure your "gut flora" is in optimum balance? Not so crazy, scientists have just finshed cataloguing the hundreds of thousands of microbes that exist on and in your body. It excites me that in the not too distant future we will actually have access to some amazing tools to help us take more control of our health, and our health care.

But back to the FitBit. This type of sensor-driven feedback technology is showing up in more and more places. Ever see one of those speed signs by a school that tells you how fast you are going? Research shows that this almost always causes a driver to slow down, when a “SLOW” sign in the school zone barely gets noticed. Since wearing my Fitbit, I am consciously more active all day, reaching for that 10,000 step goal. I watch my sleep habits throughout the week, and can also see the nutritional breakdown of the foods I am eating. It has changed my behavior, and helped me develop new, healthy habits. But more than that, it has given me some peace of mind, because I get immediately feedback of what I can control – how much I move, what I eat, how much I sleep.

Friday is a big day for me. I will undergo a battery of tests to ensure I am remaining cancer-free. I am going into that day feeling much more hopeful, much more in control, much more certain that I will be given a clean bill of health.

But I also am not about to count only on myself, so my dear family and friends, I’ll ask you to think of me in your prayers, and send hopeful, healthy thoughts my way.

#Gratitude

If there was a single word to sum up how I'm feeling today, its Gratitude. If you are a user of Twitter, you will understand that using the # symbol, or hashtag is a way to mark key words or topics in a Tweet. I love that it was created organically by Twitter users as a way to categorize messages. Within Twitter, you can search on #Gratitude and see what the multitude of Twitter users across the universe are grateful for. As I look around, I think there's a huge opportunity for everyone to be a little more diligent about identifying what they are grateful for on a daily basis.

As I emerge from these past few trying months, that is one of my new habits. Each day I am writing down at least three things I am grateful for - as well as three positive things I am envisioning for my future. The act of writing it down makes it much more real for me.

Today's list so far? Well, first, I had not one but TWO cups of coffee this morning. For me, this is huge step forward because it symbolizes that food and drink are actually beginning to taste and feel normal. Second, I am grateful to be living in an amazing and beautiful location. It's still February, but today we will flirt with 80 degrees. The sun shines 300+ days a year. Having undergone treatment in January and February, it was such a blessing to be able to travel to the clinic each and every day in 60 or 70 degree temps and beautiful sunshine. I think it did so much to help my attitude!

And finally, I am so grateful for the love, friendship and support of so many people in my life. Doing my morning reading and meditations, I came across this blog and wanted to share it because somehow the people in my life either intuitively knew, or knew from experience, how to do every single thing on this list. You know who you are!

http://www.huffingtonpost.com/suleika-jaouad/cancer-advice_b_1290008.html

If you have a friend or family member with cancer - or even if you've had the good fortune not to face this, I found this to be an incredibly accurate list from a patient's perspective.

The secret of happiness is to count you blessings while others are adding up their troubles

The End of a Chapter, the Start of a New

Last Thursday, I had my final radiation therapy treatment. That made 28 of those treatments, every week day for nearly six weeks. As you can imagine, I got to know my radiation therapists quite well- and I am really grateful for the incredible care they gave me and the compassion they showed each and every day.

Here's me, ringing the bell that says I am done with treatment. Anna and Allison are with me - as they should be! It was a team effort and I thank them - and Andrea and my other therapists who rotated in occasionally - from the bottom of my heart for helping me get through this.

It is my sincere and deep hope that I will not have to endure a regiment such as this ever again. Yet in a way it will be hard to move forward because there seems to be no explanation for why I got cancer. No significant family history. A very healthy lifesytle. Hardly ever been sick a day in the last 10-15 years. And so, without a why, I am left to wonder what I am supposed to do differently, or better. What I am supposed to eat - and not supposed to eat. If there was something in my environment that caused this to occur. So many questions - so few answers.

But here's what I can do. I can choose to focus only on the positive. To think the best of myself and others. To rid my life of those things that no longer hold value, or offer joy and happiness. To spend my time with people who lift me up, and on activities that I am passionate about. I challenge each of you to ask yourself if you are doing these things. You don't need to have had cancer and undergone treatment to make the same choices!!

I know that it will be a slow, but steady climb physically to resume my normal activities. Last week, my blood counts were (hopefully) at rock bottom, causing the nurses and my doctor to marvel that I looked as good as I did. I have to be very careful not to expose myself to illness - I don't have many white blood cells to fight germs. I am to avoid knives - or injuring myself - because I have few platelets to clot my blood. Perhaps most frustrating for me is my lack of hemoglobin - which carries oxygen to my muscles. I get winded walking up a flight of stairs. But these are all temporary and I have to believe if my healthy cells have been this impacted, that the double-whammy of chemo and radiation has completely eradicated any remaining cancer cells in my body.

It's beginning to feel trite to say "thank you" to those of you who continue to lift me up with your cards, emails, texts, prayers, gifts and good wishes. I will say it again: You will never know how much all of your many expressions of love and support have meant to me. I am truly, deeply, completely blessed.

Yes, I am Alive and Well!

I know it has been awhile since I last blogged, but to be honest that last round of chemo really knocked me down, making me even more grateful it was my last session. I am just now, nearly two weeks beyond the treatment, overcoming the nausea and fatigue. And, proof that I no longer take the little things for granted... today was the first time in over a month that I had a morning cup of coffee that tasted and felt normal! Progress!

I have one more week of radiation treatments and then I am done - hopefully forever. This week I will learn more about my follow-up, but what I do know is that I will be seen at least every three months for the next two years and undergo several scans during that period to make sure that nothing else is brewing.

During my most difficult days, so many of you continued to reach out to me - through emails and cards and gifts and texts - and you will never know how much those things meant to me, nor how much they helped me fight the inevitable frustration and impatience with my physical condition. Surrounding myself with people who love and care about me has truly been my lifeline during these last three months. Here's a darling photo of my sweet niece, Kerstin, sent to me during this time:

The other thing I've done is found words to inspire me and keep me going. I thought I would share with all of you a couple of blogs, email feeds and the like that I have discovered and whose words I now crave. Check out:

marcandangel.com
tut.com
tinybuddha.com

Throughout these challenges, perhaps the single most important thing I have learned is the power of hope and positivity. Chasing away negative thoughts, moving away from negative people, focusing on the best of every situation and expecting the most positive outcomes will, I hope, be ingrained in me forever.

Unexpected, Unbelievable Good News!

When my diagnosis first became clear, and I met with a cadre of physicians - gynecological surgeon, radiation oncologist, oncologist - each assessed me from his perspective and then together, they crafted my treatment plan. After surgery and the pathology of my tumor was clear, the radiation oncologist and oncologist took over treatment planning.

So, throughout these past weeks, I've met with my radiation oncologist each week to discuss my progress and side effects. But this past monday, after three rounds of chemo, it was time to meet with my oncologist.

I went into the meeting with some trepidation. At the outset, he told me that he wanted me to complete four cycles of the chemo - six if I could tolerate them. And, he hinted that that might not even be enough - but he wanted to do some more reading, consulting with colleagues and examining the latest literature before making a final call. So, image my complete surprise, delight, relief and overwhelming joy at his news Monday that THIS WOULD BE MY LAST ROUND OF CHEMO!

So yes, if you are keeping track of my calendar, Tuesdays are chemo days and so I am OFFICIALLY DONE!

His decision stemmed from the most current literature on my rather unusual situation. You see, he told me, usually there is no radiation or chemo indicated for Stage 1B1 cervical tumors, BUT in my case, the cancer was a very rare and somewhat aggressive signet ring cell adnocarcinoma - and therefore it was collectively decided that it was very much in my best interest to endure this double whammy of chemo and radiation. In his research, four rounds of Cisplatin is pretty tolerable, but once you go beyond that patients start to experience permanent side effects, like hearing loss and neuropathy. He felt that the risk of continuing would outweigh the diminishing benefits, given four treatments is the standard.

So yesterday afternoon, I made it through my last chemo session, again with the help of some amazing and incredible nurses. Maddie, Amanda, April and others. As they were removing the catheter from my arm, 15 nurses came into my curtain with tambourines, blowing bubbles and cheering for me and presented me with this certificate:

Well... of course I cried. And then the nurses told me their rule - if you cry, you bring brownies. Guess I'd better get baking!!

I do however continue my radiation therapy sessions to completion - 28 total. As of today I have 12 left to complete!