A Great Cause...Drumstrong

Sometimes you come across a very worthy cause and I hope you can take a few minutes to watch the video that describes a great benefit coming up this weekend just outside Charlotte NC. The event details are on the site http://www.drumstrong.org/home.htm

Where to Look Each Day

Day to day living after being diagnosed with cancer can be challenging. In between the doctor visits, tests, treatments, waiting for test results lies days to just live. Days that might require going to work, taking care of family issues, going to children's activities. Life after diagnosis has a new meaning and many might think that once faced with this would come open roads to do what brings great meaning, joy and not putting off for tomorrow.

The daily activities that were present before the day of diagnosis do not mysteriously go away and lead to the wide open world of carpe diem. Family members still have needs, children still need to be played with, read to and given bathes. It would be nice to sell the house and move to the Caribbean but life must go on. Yes, priorities might change and plans moved up, but when day to day life calls, where does one find inspiration?

I recently read a post from the blog, Zen Habits that lists 30 incredible places to turn when you need inspiration. In the post, Leo Babuta had asked readers on Twitter for ideas and he put many of his favorites on the site. The list is interesting and many do not require an electrical hook up or WIFI.

It can be challenging to find ways to bring inspiration into daily lives that often require routine tasks. I would love to hear from others what they find inspiring.
Today it was 20 minutes reading with a cup of tea before heading into work. Have to say the time taken was well worth it.

Looking Forward

A while back I wrote a post about hope, and what hope can bring. I recently began reading a book by Jerome Gropeman, MD titled, The Anatomy of Hope. Early in the book he writes,

"Hope can arrive only when you recognize that there are real options and that you have genuine choices. Hope can flourish only when you believe that what you do can make a difference, that your actions can bring a future different from the present. To have hope, then, is to aquire a belief in your ability to have some control over your circumstances. You are no longer entirely at the mercy of forces outside yourself."

This passage sums up alot of what I have come to believe since being diagnosed in 2007. Hope, choices, keeping a sense of control and bringing a future different from the present. This road into a new way of life has many curves and detours but hope can provide direction that cannot end in a road block.

I recently met with my doctor to go over blood work since undergoing a round of Rituxan treatment. In his words, "if someone brought me these values, I couldn't diagnose you with Leukemia." These words instill a sense of hope, not that this disease will be gone forever, but that I had made a good choice to start this treatment. This choice came after seeking another medical opinion and the opinion of others who had undergone similar treatment. This choice came after hours of reading, searching, studying and taking control over things that I once had let go untouched. I had made the choice that I don't want to hand control over to others but be an active participant in my health care.

The loss of control is something that many people face when dealing with a serious disease such as cancer. As Dr. Groopman writes, to acquire a belief in your ability to have some control... The control may come in small or large ways, but there needs to be some level of control that we as patient's must have.

I look forward to days of feeling good, having energy and living life.

Modeh Ani

Tomorrow is my birthday...turning 45 and get to spend the day with my wife, an IV pole dripping with Rituxan and another opportunity to be glad to be here. Couldn't think of another way to spend my 45th and had hoped to finish up this round of Rituxan, but with the reaction I had on day one, we stopped the treatment and continued the following week. Now the last treatment will not be on my birthday as planned. Figure the best thing to give myself this year was the chance to feel better, be healthy and get ready for a great spring time and a big summer vacation.

My first words when I awaken will be...

Modeh ani lefaneicha melech chai v'kayam shehechezarta bi nishmati bechemlah - rabbah emunatecha

I gratefully thank you, O living and eternal King, for You have returned my soul within me with compassion - abundant is Your faithfulness!

Am I grateful? You bet ya!

Of Mice and Men

Sometimes during times of illness and facing a disease, there is emphasis on doing all the right things, avoiding over medication usage and even with some, try "natural" approaches. There should be room to be thankful for all the developments that science has offered to allow treatments to be developed that offer hope. Hope to reduce symptoms, improve life and in some cases cure the diseases. Thanks to the scientists who spend many long hours working on drugs and treatment regimens that have become available now and for the future releases of medications yet to be used. Thanks to the MD's and scientists who put these drugs into clinical trials and to those patients willing to participate in these trials.

Rituxan is a monoclonal antibody derived from the benefit of willing mice to give their help with science advancement. Never in my past would I even have thought of mice in such a way and be thankful, but if this drug is as helpful to me as I have read and heard from others...than I must give a hive five to the small 4 leg rodents.

This Too Shall Pass

Started a treatment yesterday with single agent Rituxan. Went into this with great anticipation, excitement to feel better and apprehension of the unknown and possible side effects. First treatment reactions have been reported but I felt strong and ready.

Well nothing feels strong when your heart rate drops, blood pressure falls, nausea sets in, chest tightens and breathing isn't so easy. After recovering from the acute symptoms, the feelings of sadness and letdown came over me that this treatment might not be tolerated and then what would be next. After the deep sleep following the treatment came I figured why not reach out to others who have gone through this.

I emailed a list server, that others with CLL follow, my concerns and waited for the replies to come in. After reading from many(more than I ever expected) speak of their similar situation and experiences along with the words to keep strong and fighting...the phone call came from my nurse to check on me. She had spoken with my doctor and we will try again next week.

After waking up and not wanting to get dressed for work, the day ended with hope and a resurgence to be strong and get ready for next week. Sometimes the board is ready, the cards dealt and things still have to be handed over to a source that one cannot control the outcome. But I can prepare myself mentally, physically and remember... this too shall pass.

Tick Tick Tick

So another oncologist appointment and the blood draws that occur with each. Finally feel like I am over the 6-8 weeks of sinus and respiratory infection, coughing and just ready to get going again. Overall well but the WBC is rising. Sure it could go much higher before major symptoms arise and other numbers start being affected, kind of feel like a race to see how high the numbers can go without needing treatment, nothing like the watch and wait.

Had the vision of the ticking time bomb waiting...waiting...waiting...

Then I thought, what not a better reason to enjoy every day, find time to laugh, enjoy those around me and count my blessings as they say down in the south. Sounds kind of cliche' but a time bomb growing within my body, tends to send a strong message, one that I might not have had before, to get going on the life thing, and so on...tick tick tick