The Internal Voice

Some days it seems like time is standing still. Life's struggles are there, movement forward is lacking and the fear of the future is present. Take one day at a time, take small steps, 1 step at at a time and so on to make the enormous seem manageable. Momentum seems to be a key in keeping progress occurring and preventing staleness.

In between the doctor visits, IV drips and CT scans, life can seem so normal...is that so bad? Sometimes at those times the momentum can slow down and the internal struggle can build to resist eating right, not exercise, avoid meditation and all the things that can help in fighting the battle that cancer can bring. Often fear promotes movement and the feeling to change things from the status quo. An inspirational story read or heard of others can spark that inner fight and energy to keep moving forward. And isn't it great when this can cause the spark instead of a medical test result or a treatment session. Take the time to listen to the stories of the Running Voices and see if the momentum to keep up the fight is ignited.

I'm Tired

It's been quite a while since I last wrote. Life has been keeping me going in too many directions and too much irritation from sinus issues since June...still no excuse. I guess I am overall tired. Living with this chronic disease stuff has taken many turns as I am sure others have been through themselves. Recent rounds of Rituxan brought great hope and after the first round feeling great, the second brought less than that. The timing of another sinus infection concurrently with treatment made things worse than I would have liked but I must keep going. I keep having feelings of being tired and not just fatigue tired but tired of many of the challenges that have come my way.

Tired of...

• Antibiotics
• Doctor visits
• Taking time off from work for medical reasons and not vacation time
• Missing the opportunity for an extended vacation this summer in order to spend four weeks with an IV drip of Rituxan
• Reading information on Leukemia and Lymphoma is hope for something new to consider
• Being drained mentally and not feeling like having the fun I used to
• Not exercising as much as I have done due to the excuse of being too tired
• Working hard to eat a good diet in hopes of feeling better
• Waking up and realizing that I have cancer
• Going to sleep and remembering that I have cancer
• Seeing people enjoying life while I think of what I could be doing for myself to prevent symptoms from occurring
• Did I mention not having a summer vacation due to too much time spent from work for medical reasons?
• Just plain tired of having chronic cancer

So what should I do? I keep telling myself to keep strong, fight this stuff, find hope in the blessings that I have been given, enjoy each day and my family for the love that they give, be thankful for the work that I am able to do but still I feel tired. I am sure that this too shall pass but I am getting a little impatient. I do want to write more often and have been working on a book idea I have as I feel that I want to share more of my experience. I often find myself thinking of what I want to do with my life...I guess I should just live life and let the answers unfold as I go. But tonight I am tired so I think I'll get some sleep. Tomorrow is another day of hope.

Be The Match

Something to consider for all those connected to cancer

Just When You Think

I have not written anything in a while as life has been keeping my on the run. Sometimes recently I feel as though I am not sure which way is ahead and where I have been. The one thought that keeps going through my head, is that something is pushing me in a new direction. Not quite sure which direction but get the feeling that is is different than where I have been before. Maybe the period being almost 2 years post diagnosis(July 3rd) is settling in to ask me "just what are you doing"?

Searching for answers that I'm told lie within still leads me to look outside, to music, books, and other's writings. I just finished a great little book titled, Finding My Marbles. The book can be read in a very short amount of time and offers a great message around the idea of losing your marbles and being trapped in what can sometimes be a disjointed life. Check it out and let me know what you think.

Some days, as I have written about, seem difficult to get the energy going to "make it a great day." Sometimes though, just when you think it will be an off day, something happens to bring a spark of hope, joy, laughter. It can be a phone call, a funny joke, a great customer service experience in an otherwise mundane stop by the grocery, or it could be an email that catches your eye. This is what grabbed me today, an email from David Bailey, fellow cancer survivor. Sign up on his email list, and you will receive incredible writings that he produces. It often amazes me that any one person could write such powerful verse, and often. Today he sent out a note titled, Just when I thought. I have included the words here, with his permission, as it spoke to me and hopefully will to you.

Just when I thought
I had nothing left to say
The new morning brought
A few more words my way
Again I was taught
To celebrate each day
it’s always worth a shot
When hope shows up, let her stay
Now me, I used to have a lot
Of reasons I’d delay
But time is shorter than I thought
Don’t wanna let it waste away
So at the break of every day
I wanna live what I been taught
I’ve seen the games that people play
It don’t take much to get distraught
And be that as it may
I guess that’s why I still jot
Down what I’m trying to say
Even when I just cannot
Be certain things will go my way
But I’m sure there’s still a lot
To do before I hit the hay
Creeping up in my blind spot
Is something we call yesterday
Don’t let it be an afterthought
There’s time to try another way
Oh – and I almost forgot
Shout it out with me: Anchors Away!

I only hope that I can celebrate each day, take the time to slow down and let life move through me versus trying to force myself on life. That way, the experiences that just happen to come by for a visit will have a place to stay, even if for a few moments.

Live with hope

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

Words Can Mean So Much

Where there is faith, there is love.

Where there is love, there is peace.

Where there is peace, there is God.

Where there is God, there is no need.

-Anonymous

Found this recently and have been pondering the words. Then today read the following blog entry and thought of how inspirational words can be. Sometimes to lift spirit up, bring thoughts inward or to bring thoughts of life that is good.

http://cewilton.blogspot.com/2009/01/january-22-2009-method-in-madness.html