Tag Archives: advocate

On the Road Again…


Florida bound: we are on the road again!   With a plethora of test scheduled for next week, we hit the road Friday afternoon for the journey south.  ‘Why not fly’, a good friend said to me this week.  While flying would get it there  “lickety-split,” there is a sense of relaxation in the drive.

In the hustle and bustle of care-giving, advocacy, work, family commitments and the such, time tends to fly by without notice.  ‘The drive, while annoying at times, allows us to have great conversations free of distractions.   I find driving to be relaxing and as all caregivers (should) know, when you have a chance to find some times to relax…take it!

Speaking of relaxing, I had the opportunity to take in a hockey game this past week.  As an avid hockey fan and former season ticket holder, I have not had the opportunity to attend many games in person over the past few years.  Yet I was treated to a game this week between the St. Louis Blues and the Detroit Red Wings.   Out of all the sports I played as a kid, ice hockey was by far the most fun. (Must be the Canadian in me!)  I grew to love the sport at an early age when the NHL expanded to 16 teams in the late sixties.   Still waiting for our first Stanley Cup; I’ll always be true to our boys in Blue!  

The night at the hockey game reminded me about how important it is for caregivers to find some ‘me’ time.  While it is an honor to be a caregiver, to be on the top of your game, you have to care for yourself, too.   Attending the hockey game was a treat and it allowed me to relax, enjoy and refresh.   Often times as caregivers we forget to care for our self; if we can’t care for ourselves, how can we care for the one we care for?

This is not to say that “The Little One” did not have his time in the spotlight this week.  One of his most difficult decisions this week was to decide what Phosphate to have at Dr. Jazz Soda Fountain and Grill in Webster Groves, MO.  Decisions, Decisions… Why not have…both!

As we motor down the road this weekend to Florida, we will jump right into some important medical test on Monday.  The second PET Scan is scheduled for Monday morning at 9:30 am.  The PET Scan will give us with a clear picture of how the radiation and chemotherapy attached the cancer cells; we will have the results by the end of the week.  While ‘The Little One’ has shown great improvement over these past six weeks,  we are anxious to learn what the next part of our care plan will be  as we move forward to defeat this disease.

Just as we both have had choices to make this week about mundane things like attending hockey games or what flavor of Phosphate to have; we also have choices to make on our care plan as we move forward with beating this cancer.  No matter what the results are this week from the PET Scan or other medical test we endure this week; we still have choices in our care.     Having a care-giver or better yet, having cancer does not take away from our ability to make choices.  Independence and personal choices are essential components in order to age gracefully.  No one should be denied the ability to make their own choices, yet to make the best possible choices in our lives, we have the have the pertinent information at our disposal.  Hence the need for the follow-up test next week.

We embrace the upcoming week with anticipation  knowing that we will have the ability to make choices that will fit into the needs of “The Little One.”   Without choices, there is no independence…without independence, there is no hope.   While we can’t control the outcome of the results, we can control how we respond of the results!   It is through the ability to make choices that we gain our independence from the cancer, no matter what the outcome might be.  

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We Give Thanks…to the Horn Blower!


One of our favorite breakfast nook’s is Chris’ Pancake & Dining (it gives us the illusion that I am cooking!). As we pulled the car up to the parking lot, I stopped the car in front of the building so that ‘The Little One’ would have a short distance to walk to the restaurant. (Four weeks ago he would not have been able to walk on his own to the front door of the restaurant.)

As he was getting out of the car, the person behind us had to blow the horn as we were not moving fast enough to meet his needs. In the classic ‘The Little One’s’ style, he got out of the car and asked the horn blower…’What’s the hurry?’ That exchange reminded me that he is feeling better as four weeks ago, he would not have even bothered with an exchange like that.

While thinking about the ‘horn blower’ and his impatience, I was reminded about what really is important on Thanksgiving… Giving thanks, being present to your loved ones and caring for those around you.

Cancer has taught both of us a lesson that has been invaluable and it comes in one simple word… Thanksgiving!

We are thankful for today, hopeful for tomorrow and want to enjoy as many sunsets as we possibly can. There are so many things that happen in life that are not in our control. Why blow the horn if you are not in danger?

When you give up control, you gain freedom!

The horn I am blowing today is in thanksgiving and gratitude for the things I have, the family and friends that surround us and the continued good health and happiness of ‘The Little One.’

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November – National Care Givers Month


November is National Care Givers Month!

 We all know some one who is a caregiver, whether we find ourselves taking care of a loved one, know someone who takes care of a loved one, or even if we have heard an inspritational story on the news.

 In today’s busy world it can be easy to forget to show our appreciation to those who make a difference in our lives and the lives of others everyday. As we prepare to celebrate another Thanksgiving, let us give thanks to those who choose to spend their days serving others.

“Appreciation is the highest form of prayer, for it acknowledges the presence of good wherever you shine the light of your thankful thoughts.”
Alan Cohen

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Downsizing


While we know that the tumor has been downsized by the radiation and chemotherapy treatments, we have taken a long look at our personal belongings and have started the process of downsizing in this area too.  So far, the experience has been quite cathartic.

How much ‘stuff’ does one really need to be comfortable in life?  China that has never been used, kitchen gadgets (well, except for the Tumor Extractor!), glasses, roasting pans; yikes where did all this stuff come from?   And better yet… what really is the need?

Funny as it seems, when I was in the seminary those little rooms we lived in seemed so small…now as I look back at that experience, living austerely has its benefits.  Thomas Merton does know what he is talking about!

Cancer is a life changing experience for all who are involved in it.  We have grown closer because of the disease and have I have come to a reality check with my life.   You see, what is important is not how many items you collect, rather what is important is how many lives you touch.   The last few years I have lost touch with my own reality; cancer does have its peculiar benefits.

As the green leaves transition to beautiful autumn colors, we are in a transition mode as well.  What we do for ourselves dies with us.  What we do for others will ever be immortal.  I am honored and proud to be a caregiver, it is one of the most remarkable experiences in life.  I am also grateful for the reality check that our downsizing has provided to us.  May the ‘Little One’s’  health continue to improve; let the downsizing begin!

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The Tumor Extractor just $19.99


We have all seen those gadget that they sell on TV… It seems that all those gadgets sell for just $19.99 and better yet, all these gadgets are a must need for every household!

As I was preparing waffles for breakfast this morning I came across a new product called ‘The Tumor Extractor’

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Simply apply to the area of the tumor and all your troubles will be gone!

‘The Little One’ and I enjoyed a great laugh when I presented him with our new ‘Tumor Extractor’ for just $19.99 and just think…we only spent $10,000 on chemo and radiation! (Of course Monty Python’s Spamalot is playing in the background.) Every cancer patient and caregiver wishes there was something as quick and simple as ‘The Tumor Extractor’ to remove cancer from the body. But what is available to every cancer patient and caregiver is hope, love, support and humor. That is the true Cancer Extractor!

While Each one of us deals with the realty of cancer in a different way, we want to look on the bright side of life!
Yesterday is gone, today is here, not sure about tomorrow. Today we are enjoying our new ‘Tumor Extractor’ even if it will only help us make waffles.

It is hope that let us stand problems…but our beliefs let us finds solutions.

Happy Sunday! And remember… ‘Always look on the bright side of life!’

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In Medicine…East vs. West


As ‘The Little One’ continues to show signs of regaining his strength, we decided to take a detour and visit Dr. Mo this past Saturday.  Who is Dr. Mo you might ask…well Dr. Mo specializes in eastern medicine, specifically acupuncture.   We visited Dr. Mo earlier this year for treatments of sciatica and after four treatments we were pleasantly surprised at the relief ‘The Little One’ received from the acupuncture.   ‘Why not consult with Dr. MO’, we both asked each other this past week. 

While we will not know for a least another month what effect the radiation and chemotherapy has had on the tumor; we know very well that the chemo and radiation has ravished his body, zapped his strength and pretty much turned his life upside down.  Traditional medicine, while proper seems to have a wait and see attitude during this ‘down time’ before the next PET scan.

This attitude was confirmed during my phone consultations with the oncologist and primary care doctor this past week.  The nurse for the oncologist told me over the phone that ‘The doctor normally does not call patients back’…my response to that was simply…’That is odd, don’t you think?’   The primary care doctor referred me back to the oncologist…(they share the same office!).   My response to the primary care doctor was just a tad more direct…”In the patients best interest, one of you needs to be taking the lead in the decision-making.’

That comment rang a bell with me.  The ones who need to take the lead in the decision making are the patient and the caregiver.  While we are all striving for excellency, when it comes right down to it, we are the captions of our own ship.  Authority while respected, is not all-knowing.  There is a reason that medicine is a science.  There are no two bodies alike!

We both know what we are facing with this disease, sometimes you just have to think outside the box.

What do we expect to gain from Dr. MO?  Alternatives, options, hope…just as we expected to gain from the traditional forms of medicine.  Yet not to pursue all options available to us, does not give life a chance.   We both saw the results of the acupuncture in March and April of this past year…why not give it a chance? 

In life…there are plenty alternatives, there are plenty of options, and there is plenty of hope…we just have to engage these options ourselves….rather than waiting for that call to be returned.

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Meet Me In St Louie, Louie…


The ‘Little One’ heads to his final radiation treatment this morning. We are both thankful this chapter has come to an end. Yet in retrospect, there has been some bonding with the other patients who are scheduled at or around the same time.

Whether it is a gentle hello, a wave of the hand or just a simple jester, there is a bond with these patients that in undeniable. It has been an honer to be in their presence.

We will be motoring up the road today to St Louis. We are looking forward to the trip as a change of scenery will do the Little One some good!

Meet me in St Louie, St. Louie!

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