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The Lamp Shade


Humor can take the edge off a number of situations, especially when dealing with serious health or care-giving issues.  For those who have followed our blog, you’ll know that we often use humor to get through many difficult days.  Reality is what it is; hard do change, sometimes equally hard to deal with.

Moving can be stressful too, yet in a different way.  Sooner or later, the last box will be unpacked, the last picture will find itself on the wall, everything will find its place!  Even a miss-placed Lamp Shade.

Upon the arrival of the furniture and the mounds of mess and stress that followed,  I was left to ponder about caregivers who are often under stress and burdened by their task at hand.  You see, sometimes in the heat of care-giving,  we can lose sight of the fact that the one who is being cared for is… ill.

When your ‘patient’ says something out-of-turn, don’t blame the ‘patient’… blame the disease.  When your ‘patient’ does not feel like eating, don’t blame the ‘patient’…blame the disease.  When ‘the patient’ is just not feeling up to doing something, don’t blame the ‘patient’…blame the disease.  Caring is a daunting task and the caregiver often loses themselves in the process, and you know, that’s OK because it’s not ‘the patient’s’ fault…it’s the disease.

Just as Lamp Shades protect the bright lights of the bulbs of which they cover, care-givers do the same as they protect and ‘shade’ those for who they care for.  When the light burns out, we don’t blame the shade, we blame the bulb. When illness plays havoc with our loved one, we don’t blame the patient, we blame the disease.

Image  When we are focused on the task at hand, mindful that it’s the disease, not the patient…every ‘lamp shade’ finds its proper place, with love, tenderness and commitment.

We are blessed by the good health reports we are receiving in Florida and look to continue to bring great ‘shade’ to those around us!

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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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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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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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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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Cure Esophagus Cancer


The Purple Jacket and The Bow-Tie-Guy support research to cure esophagus  cancer. 

Stay tune to our blog for further information on how you can help!



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Purpose….love…commitment


‘The Little One’ is sleeping soundly…unfortunately the last two days have not been good for him. Yet I am fortunate to have him with me; If you want to debate the sanctity of marriage…go for it…yet when two people are join as one there is purpose, love and commitment…No ‘State’ or piece of paper can determine that for you!

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