Tag Archives: love

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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