Tag Archives: esophagus cancer

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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So…you want to go dancing?


As we move into the celebration of Thanksgiving, we have plenty of things to be thankful for.

‘The Little One’s’ marked improvement over the past four weeks is gratifying; we are cautiously optimistic as we look ahead to the follow-up PET scan the first week of December. While we understand the reality of cancer, we penetrate the disease with love and affection.

When we started this journey in late August, it has ended up being quite a learning experience for both of us. Being separated during the first four weeks of treatments was probably the most difficult part, yet these last six weeks has truly been remarkable. We have gone from a man who could barely stay awake for the entire day, to a man who is up and around on a daily basis enjoying so many of the things that he loves to do, including bossing me around. (Don’t let him know that I let him get away with it!)

For those who have been reading my blog, you know that we like to inject as much humor into our care giving experience as possible. One of the ‘funny’ lines we have been using since day one has been…’Are you ready to go dancing?’ I started asking that question to ‘The Little One’ when I arrived in Florida after ‘The Little One” was admitted to the hospital. We’ve used that question to gauge how he is feeling. It does get a little tired asking someone on a daily basis…’So, How are you feeling’…well…uh…’I feel like s__t, I’ve got cancer’ would be the typical answer. So we changed it up…’Are you ready to go dancing’…’no, not yet but getting closer.’ The funny thing about this question is that we both hate to dance! That is what makes this so much fun. (Two men dancing is weird anyway, no matter what side of the fence you’re on)

In the spirit of Thanksgiving, we are thankful for the time spent together because each day is like extended play. All too often in our busy schedules, we lose focus on our own realty and human frailty. What is here today, can be gone tomorrow.

Take time to ask your loved on to dance… It’s just as meaningful as telling them that you love them!

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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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Whew! What a week…and then some!


The ride to St. Louis  was just a tad more difficult than we expected, yet we made it back safe and sound even if we had to spend one additional night on the road.  As we motored in from Illinois, it is was a refreshing sight to see the Gateway Arch ahead.

As we enter our second week back in St. Louis, The Little One has struggled to regain his strength.  The radiation and chemotherapy has literally taken the wind out of his sails.   Some of the simplest things for him to do often takes so much effort.   We do hope that his strength will come back so that he can enjoy some of the simple things in life like listening to his favorite operas

My routine has changed quite a bit, too.  While it is an honor to be a caregiver, the caregiver has to be mindful of their energy level as well.  There is quite a bit of responsibility that goes into caregiving,  none as important as caring for yourself.   I am most fortunate to have a wonderful job and an understanding organization to work for; I am thankful that my Real Estate clients are patient as well.   We know that we are not in this alone.

At least for now, it is clear that The Little One will not be able to stay by himself.  As he regains his strength we can revisit this issue,  but for now it is clear that he will need  supervision as we move forward with this insidious disease.  This is difficult for him because he is so fearlessly independent, yet we all have make adjustments to the hand that was dealt.

We have another three weeks to wait before we go for the follow-up PET scan.   The PET scan will determine the next course of action; we do know that there will be NO more radiation! By all accounts we acknowledge that the tumor has shrunk; yet the physical and mental anguish of these treatments pale in comparison to what an ordeal this has been for ‘The Little One.’

Martin Luther King once said: “Take the first step in faith. You don’t have to see the whole staircase, you just have to take the first step.”   As we move forward, our faith is made stronger by the love and care of our family and friends as we continue to battle this disease!

 

 

 

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The Future is Now


“No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Your time is limited, so don’t waste it living someone Else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” – Steve Jobs

As I pondered this quote from the late Steve Jobs, I took quite a bit of solace and inspiration from it.  As a caregiver, you freely give your life to someone else while being mindful of your own individuality and needs.    As The Little One heads into his final four days of radiation treatments, our lives are changing before our eyes.   We can’t predict the future, we can only deal with the present.   We intend to live our lives to the fullest and enjoy each and every day we have.

The key here is not to wait until there is a serious illness to have this revelation.  We have been fortunate to have followed our heart and intuition since we became friends.   While our life is different because of the  illness, the illness will not control our lives.

While completing my internship in Hospice a few years ago, I was often observed families who were trying to resolve life long issues at the ’11th’ hour.  We all know that is an impossible task, yet understandable under the circumstances.   We can’t fix the past, yet we should not live in it either.    We can live today and search for tomorrow; that is what life and hope is all about.   Or as Steve Job’s put it…”Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

 

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“Not Dead Yet” from Monty Python Spamalot


As we were enjoying breakfast this morning, I asked ‘The Little One’ how he was feeling…he uttered…”I am feeling a little stronger; I’m not dead yet!” Of course, we both broke into laughter as we knew we were referring to the song “Not Dead Yet” in ‘Spamalot.

If you are a fan of Monty Python, you know that their off-color humor usually hits a nerve, yet where would be without a little laughter in our lives? While cancer is a serious illness with far-reaching implications, humor, when used correctly, can lighten the burden of a stressful experience. The song ‘Not Dead Yet’ has wonderful lyrics and when seen live and in person on stage, you grasp the total meaning of the play on words.

Now that The Little One has been out of the hospital for a few days, he is starting to regain this strength; he is starting to feel a little better!  As the song goes… ‘I feel happy, I feel happy…I’m not dead yet…I can dance and I can sing…I am not dead yet…I can do the Highland Fling!

When The Little On realized what he had said this morning, it changed his whole perspective to the start of the day. I can only imagine how difficult this has been for him going solo for the first month of his treatments.

Today, there is a beautiful Florida sunshine outside, let there be sunshine and laughter on the inside! We carried this theme with us all day-to-day as we’ve traveled to  radiology and now to the urologist.

Laughter is the antidote to fear; why not live in laughter even, in these difficult days?

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A Trip to the Hospital


The phone rang and there was a trembling voice on the other end…”They are admitting me to the hospital”  The Little One said.  It was not difficult to hear the fear and anxiety in his voice; the psychological aspects of going through chemo and radiation are often overshadowed while in the mist of the treatments.   Even more unbelievable…his doctor wheeled him to the hospital emergency room herself! 

While no one really relishes a trip to the hospital, this was the best way for ‘The Little One’ to help regain his strength and take a break from the cancer treatments.  The chemotherapy and radiation has zapped his strength;  low white blood cell count and low potassium levels seem to be the culprit in this sordid mess.     All fixable items on the health dept chart when recognized early and treated properly.   We are thankful for the chemo-therapist for his swift action and recognizing that was something amiss.

Try as we might, we just can no longer do these treatments apart.  Independent as he is, these treatments are just not something that you can do on your own.   The issues are enormous;   house and doctors in Florida, job and family in St. Louis.  Yet one thing is certain…home is always where you are when you are with the one you love.

Last Saturday I met with a wonderful geriatric social worker in St. Louis by the name of Jeanette.  The hour I spent with Jeanette was worth its weight in gold.  One of the great lessons that I was reminded of during my visit last week with Jeanette is the need to network and explore expertise other than your own.  (Now is not the time to be a legend  in your own mind.)  There are more options available than meets the eye, it’s just getting to the right resources in time to make the proper decisions.  I am thankful for her knowledge and thankful to Sherrill Wayland from Metro SAGE St. Louis for the great referral.

As I have previoiusly mentioned, being a caregiver is a privileged…Yet in order to be a good caregiver you have to sometimes detach your emotions and explore knowledge and resources outside your area of expertise.  There is no need for the caregiver to go solo!  My visit with Jeannette reminded me that in order to think outside the box, I have to get out of my own world.

As we move into the final stages of the chemotherapy and radiation treatments, we are doing this together…side by side, one by one.  Now that I am in Florida, one decision is firm…’The Little One’ will no longer be ‘physically’ alone to go through these daunting treatments.  We look ahead with hope, with anticipation and most of all…with all your love, prayers and support!

 

 

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Mixed Messages?


Anyone who has had to deal with multiple (specialist) physicians at the same time know that is can be difficult to get  physicians to communicate and share patient information.     In my opinion, the perfect physician is one who takes the time to explain medical terms in common language, while collaborating with other physicians (who are on the same team with the patient) so that the information that is being delivered to the patient is consistent and  understandable to everyone involved with the patient; but most importantly.. to the patient them self. 

As ‘The Little One” enters into his third week of radiation and chemotherapy,  we have been getting mixed messages from some of our team members of physicians.    While it is agreed by all team members that “The Little One’ needs to add as much protein  to his diet as possible,  an issue came up this week that left us scratching our heads.   Just how much protein is enough...I guess that depends on who you ask!

Until you experience  chemotherapy and/or radiation,   you really don’t know what to expect.  ‘The Little One’ has had a roller coaster of experience over the past two weeks  because, as we know…’what goes in the body, eventually has to comes out of the body!

Which takes me back to the issue of the protein.   Both the radiologist and the chemo-therapist have suggested that “The Little One” drink over the counter protein drinks…Boost, Ensure…etc to help inject additional protein into his diet.   Yet here is the puzzlement…radiology suggested that “The Little One” drink as much as possible, while the nurse in  chemotherapy suggested no more than one a day?   “‘The more protein drink, the more likely for you to experience constipation”, said the (chemotherapy) nurse.  “Drink as much as you can as the protein drink will build strength, it is good for you” said the radiologist!

Confusing…YES!!!   Both “Team Members” believe their philosophy is correct; yet both Team Members do not have to deal with the after-effects of  chemo, radiation, or the liquid protein drink.   Remember…what goes in the body, somehow has to come out of the body.  The stress is only heighten when we receive mixed messages on how to resolve these uncomfortable symptoms of diarrhea and constipation …all at the same time!    Both of our team members are steadfast in their professional opinion; both of the team  only deal with the cause (cancer) not the effect (chemo/radiation etc) which makes me wonder, how this “team” should function?

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Most successful teams work within a structure and communicate well; this team has to act in the same manner.  This week, The Team will be instructed to provide an updated care plan for  The Little One with clear directions on food and liquid intake; we will engage the dietitian as well.

We are two weeks into the process and there is a clear pattern on how The Little One is reacting to the treatments.  His best two days are Tuesdays and Wednesdays;   His worst days are Thursday thru Saturday as the Chemotherapy passes through the body. (The addition of the protein drink on Thursday thru Saturday only heightens the dualistic symptoms that he experiences on these days.)  Sunday and Monday seem to be the neutral days,  yet he is tired and worn out both mentally and physically from the  calamity of the chemotherapy passing through the body.

Good teams make adjustments, while listens to messages both verbal and non verbal, along with providing  consistent communication so that everyone involved in on the same page.  This is no time for individuality or for ego; no teams wins on mixed messages, no team wins as an individual.

We  continue to move forward with hope, with determination and most of all…with love.

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