Tag Archives: esophagus cancer

End Of Life Wishes: Sometimes You Just Have To Ask.


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The Purple Jackety Highly recommends Caregiving.com

The Purple Jacket Highly recommends Caregiving.com

On Saturday,  Richard and I were guest on ‘Your Caregiving Journey’ hosted by Denise Brown from Caregiving.com You can listen to the show by simply clicking here. 

Our conversation today came out of a discussion that Denise and I had a couple of weeks ago about a decision I made to withhold information from Richard after he completed his radiation and chemotherapy treatments where the oncologist estimated that he had 3 to 4 months to live.    We also talked about a variety of other  end of life topics that are often difficult to discuss, yet important to get out in the open.

Having a discussion with your partner or caree on such a sensitive topic can be difficult, but so essential in order to Be A Healthy Caregiver. 

During our discussion, Richard spoke about his desires when his pain becomes too great, 20111225-083619.jpgdescribed what a good day feels like and shared what he whats from me as his partner and caregiver on a daily basis. Sometimes it is a simple as…’When something is wrong with me, you will be the first to know, until then, just let me be!

Denise and I talked about the challenge of letting go of my own beliefs and emotions when it comes to Richard’s  wishes.  As I mentioned on the show, Richard and I come for different faith traditions which has  different perspectives and philosophies when it comes to end of life hands touchgindecisions. However as his partner and his caregiver, it is essential for me to put aside my own personal beliefs so that I can honor what Richard wants.

As Caregivers and life partners, we often forget that we are not the ones who are sick.  While we share in our care and concern for each other, when it comes to these critical issues, it is important to follow the wishes of the one who is ill.

End of life discussions are never easy to have.  Richard and I have both buried our partners and while we both have previous experience in this subject, it does not make it any easier. We just know that we have to have this discussion.

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Herman & Richard 1990′s

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Richard & Chris late 1980′s

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Richard & Chris 2012

Find a way to have that end-of-life discussion…

Below are some great example of how to start this conversation along with some great questions to to get the conversation going provided by Denise Brown at Caregiving.com

“If you feel uncomfortable, simply say, “I’m uncomfortable with what I’m about to ask, but I’ve been giving some thought to your last months. I want to make sure I understand what you what and need. Would you be up to having a discussion?” And then go from there. The discussion is a process which means you might continue the conversation over several days and weeks and month. And, as your caree’s health changes, you’ll want to revisit the discussion to ensure your caree’s wishes haven’t changed.”

These questions can help during your discussion:

1. How do you want to spend your last months and weeks and days?

2. What do you want from me during your last months?

3. What’s a good day like for you? (This is a good question to ask regularly as the definition of a “good day” will change.)

4. Do you have any unfinished business you’d like to finish?

5. How do you feel about dying? What do you think happens after we die?

If you haven’t visited Denise Brown at Caregiving.com now is the time to do so.  Richard and I consider Denise and all the members of Caregiving.com as our extended family.   Denise is a true leader in the Caregiving community.

Remember…We Might Have Cancer…

img_19122012_204936But Cancer Does Not Have US!

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Filed under advocacy, Advocate, Be A Healthy Caregiver, cancer treatments, caregiver, Caregiving, Esophagus Cancer

Remember…Blame the Disease, Not The Caree!


When I was a kid, one of my favorite roller coasters was the Zephyr at the old Pontchartrain Beach amusement park in New Orléans.  Those steep curves and big drops were exhilarating, especially when the car made the turn to come back to the station ― when for a moment you thought  that you were going to fly into Lake Pontchartrain only to feel the car make that big pull to the left at the last second and head back to home base.  They do not make Roller Coasters like that anymore! 

Being a caregiver at times is like riding a roller coaster: up the hill, down the hill, swaying through the curves that Caregiving brings to us on a daily basis.  I know I must have ridden the Zephyr over a 100 times in my life, so I knew what to expect and could anticipate the bumps and curves as the car sped down the track.

Caregiving can change at a moment’s notice and… without any warning.  When your anxiety heightens, that is precisely the time when you have to be calm in the presence of your caree.    All of a sudden, those steep curves look ominous; those hills become daunting.

  • When your caree lashes out at you, take a step back and assess the situation; more times than not, it is the disease talking, not the caree.
  • Be attentive, not condescending.
  •  Be proactive, not reactive.
  • As a caregiver, remember you are not the one who is sick.

‘The Little One’ taught me this lesson as he related stories of being a caregiver for his partner Herman who passed away in 1999 from Alzheimer’s.  “As mad as I would get with Herman, I had to remind myself that it was the disease talking and not the man who I had known for 43 years.”   Over the last 48 hours, I have been reminded of this story quite a number of times as we are currently in the mist of change with ‘The Little One’s’ health.  We never know when the tumor is going to act up, but when it does, it takes its toll.   We are hoping that ‘this roller coaster’ gets back on track and pulls into the station .

When riding the Zephyr  I could anticipate the bumps and curves on the track, and I knew that I would always end up back at the station; however our health and well-being is not so predictable.  So when those bad days surface, we both take comfort in knowing that it is the disease, not the person.   Mindful that the person you love and care for, will always be inside your heart no matter what is inside their body.

You see…We Might Have Cancer…

 But Cancer Does Not Have Us! 

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Be A Healthy Caregiver On Blog Talk Radio Tuesday at 1:00 pm


Join us on Tuesday November 6th at 1:00 pm for   ‘Be A Healthy Caregiver’ on ‘Blog Talk Radio‘  with our special  guest Michael Norfeet, Program Director of the Noble A. McArtor Adult Day Care Center in Fort Lauderdale, FL.

Respite care is essential in the equation on how to Be a Healthy Caregiver. Participation in Adult Day Care often prevents re-hospitalization and and may delay admission to residential long term care.  For participants who would otherwise stay at home alone, the social stimulation  and recreational activities may improve or maintain physical or cognitive functions. For Caregivers, Adutl Day Care Center provides respite care, enabling caregivers to work or have a break from their Caregiving responsibilities.

Join us on Tuesday November 6th at 1:00 pm for ‘Be A Healthy Caregiver’ on Blog Talk Radio by clicking here

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On Borrowed Time?


 

I decided to try something different this evening with my blog post… I am using Dragon Naturally Speaking to post my blog this evening.  I have come to the realization that I am much better at speaking than I am at typing: this just might be a better way for me to communicate my thoughts, feelings and emotions as I moved forward with ‘The Purple Jacket.”  So far so good!

Jewish Halo

This past week,  The Little One had his appointment with the oncologist. What was amazing about this appointment was that I did not feel the need, nor did I have the time to go to the appointment with him.   Now the ‘Mother Hen’ in me worried all morning about the whereabouts of “The Little One” yet  I knew deep down inside me that could handle the oncologist, handle the drive down to the office and be independent.  He did not get to be 81 without some form of independence!

Just as is the primary care doctor was encouraged at his progress, so was the oncologist.  It just so happens that the oncologist and the primary care doctor share the same office space;  this convenient for sharing information between staff and doctors.  The other benefit of this location in that the chemotherapy treatments is on the site, too! This  setup has made easier, not only for “The Little One”, but for all the patients that these physicians see on a regular basis.

The oncologist continued to spread good cheer,  good health and well-being for “The Little One.”  As I mentioned in my last blog post, the oncologist had projected 3 or 4 months to live after the initial diagnosis and subsequent treatments.  While he is pleased to be proven wrong, statistically speaking, the cure rate for esophageal cancer is one of the lowest there is.  If we are going solely by the book, then 3 to 4 months is correct.

It is understandable why a diagnosis like this would be attached to such a short lifespan.  That being said,  we forged ahead mindful of the pitfalls, yet striving for the best possible results.  We never want to rule out hope!

 I guess what amazes me the most about this visit to the oncologist is not the fact that we all recognize that the little one has far exceeded anyone’s expectations; it’s why is the doctor felt like he has to end this positive visit with the words…”You know you’re on borrowed time!”

Photo Credit: Pinterest

Granted I was not there for this conversation, and I have no reason to doubt what “The Little One” has told me in regards to this conversation.  Yet, I am not sure what the purpose of comments like this does for a patient, for a caregiver or for the physician themselves?  Throughout this whole ordeal, we have taken a positive approach to dealing with the effects of cancer. We could sulked, we could  have  played the blame game, we could have gone into denial… However, what good would that have done for either one of us?  That’s just like saying…”you know we’re on borrowed time.”  

I do not claim to be a doctor, I do not claim to be a clinician, but I do believe that I understand how a positive outlook and healthy communication  can have a soothing and  healing effect on the mind, on the body, and of the spirit when dealing with critical health issues.  When you think about it,  we are all on borrowed time, yet does a cancer patient really need to be reminded of that?

Photo Credit: Pinterst

The healing power of body, mind and spirit plays such an important role in overcoming physical (and mental) illness.   To use a sports metaphor, the best defense is usually a good offense.  The best way to deal with a diagnosis of cancer is to be as realistic and honest as possible.  Our best offense was to plunge full force  When I look at this comment from the oncologist in this light, I can understand it.  Yet to presuppose a diagnosis without the addition of hope, only leads us to despair.  Reality is painful enough, more so without the effects of hope!

Sometimes Just Being There is all we need

Through this experience, I am convinced that one of the key tools in transmitting hope and reality,  is the ability to be an empathetic communicator.    Calmly… Empathy transmits hope and reality.  I don’t think that there is anymore that we can ask for when dealing with the stark reality of Cancer or any other disabling illness.

You see…We Might Have Cancer…But Cancer Does Not Have Us! 

Photo Credit: ‘The Bow-Tie-Guy”

 

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The Bow-Tie-Guy Tip of the Day


  Honor your past; but don’t live in it! 

Photo Credit: Free Digital Photos.com

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Make an Oncologist Smile.


The trip to the oncologist brought a big smile to everyone face. Amazed at the progress of ‘The Little One’ the doctor encouraged us to continue on this smooth path and don’t come back for six months!

Now seven months past the diagnosis and five months past the last Chemo/radiation treatment, we find ourselves on an upwards swing. We have much to be thankful for…

Wonderful family…

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Fun times…

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Great Friends…

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Love comes in all shapes and sizes: don’t let love pass you by because life can change at a moments notice.

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You see, we might have cancer… But cancer does not have us!

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Excelling in Independence


As we continue with our transition back to Florida, it is hard to believe that we have already been here a month.  Yet,  after one month, it is easy to see the positive affects that this  transitions has had on ‘The Little One.”  It really comes down to one simple aspect of life…INDEPENDENCE.

One of the main issues that usually surfaces in a care giving role is that of independence versus dependence.  We all strive to keep our independence; it’s that physiological edge that makes us want to cry out for more.  Illness in general and cancer in particular, often lead to dependence.  Dependence can heighten the illness in which you are fighting to over come; dependence can in turn lead to depression, which all to often creeps into our physical and mental being.

While we miss our family and friends in St. Louis, ‘The Little One’ has gained quite a bit of his independence back since returning to Florida full-time.  There is a second car to drive, there are long-standing friends and family in the area, there is a house that he shared with his partner Herman for over 30 years, trips to the grocery store and an ocean right down the road; the list goes on and on.  

All to often we tend to forget that it is the simple things in life that mean the most.  When you are a caregiver, often times you have to give up things you love in order to care for the one you love.   It’s not a hardship, it’s not a problem, it is just something you do when you know it is right.

As I sit back and watch the remarkable improvement in his health, we know that life changes on a moments notice. We live in the moment, hoping that our decisions help facilitate good health and prosperity for everyone!  So far, we seem to be on the right track.  When I see ‘The Little One’ pulling out of the garage and off in his little buggy, I think…’how remarkable this truly is given the fact that six months ago he was not even driving a car, a prisoner to our home, dependent in the majority of things that he wanted to do.

Thursday we motor to the Oncologist for our next update; so far all the Doc’s have been pleased.  There is weight gain, there is added strength, there is a mark difference in personality…a personality of independence.

You see, we might have Cancer…But Cancer does not have us!

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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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A Word from The Little One


Tonight at dinner we were chatting about our blog as I have been asked to write an article for a national publication on Care-Givers and Care-Giving in April (more to come on that exciting news).  The Little One wanted me to share these words with you this evening…

“Thank you for reading ‘The Purple Jacket” I hope that in reading Chris’ account of my fight with esophagus cancer  that you don’t give up hope, share in the joy and comfort that you can reap from this wonderful thing, a dedicated caregiver. My siblings have pass on; not only is he my caregiver, he is my partner I would be all alone with out his dedication and love.  Even though cancer has struck me, for the second time, I find joy and compassion being with my partner and caregiver.  Go through life with a strong will, even at those darkest times, there is a light at the end of the tunnel.   Bernard Richard Schiffer 2.5.2012.

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Goodness Gracious St. Ignatius!


If you have ever had the chance to sit by the beach at night to hear the thunderous waves while smelling the salty wind, you know how relaxing that experience is.  Tonight I write from beautiful Hillsboro Beach; relaxing, reflecting and thinking about the events of the long-awaited results of the day.

“Near resolution of a previously seen hyper-metabolic focus at the gastroenterology junction since the prior study, indicting an excellent response to therapy.”    Whew…that’s a mouth full!  

Of course the conversation with the oncologist did not start out that way as he was startled to see us sitting in the waiting room.   “Bern” he called out; “you look GREAT, I did not recognize you at first!”  (We both look at each other and said…’We’re not dead yet!) If he only knew how much ‘The Little One’ hates to be called, ‘Bern’…but not today!

In layman’s terms, the reports indicates that the majority of the tumor has been removed by the ‘intense’ treatment; what is left of the tumor we hope will lay dormant for many years to come.

‘Cautiously Amazed‘ is two words that come to mind.

The oncologist recommended that ‘Bern’ live his life as he is able.  ’Enjoy what you can, do what you want to do.’   You don’t have to worry, doc…The Grim Reaper will have to chase us, we do not intend to grow any daisy’s under our feet.    Out of the woods, yes?  When you think of it, how many of us are really out of the woods?   You know the story…death and taxes;  It’s all in the attitude, don’t you think?  We hope and pray that what is remaining of the (little) tumor leaves us alone, let it lie idle for many years to come.

PET scans are pretty magical and pretty revealing, too…

“There is a large calcified gall stone in the gallbladder.”    Oh Boy…here we go again, another health calamity  to deal with.  The gall stone explains the pain in the back; we’ll deal with this on Monday morning, enough is enough for one day.  Aging gracefully has nothing on us!

One of the key components to age gracefully is to have acceptance of your reality. Fiercely independent most of his life, “The Little One’ knows and accepts that he just can’t do it solo.  There will be some good days, there will be some bad days…it’s just the process of aging gracefully.

Unfortunately for many LGBT seniors, aging gracefully often comes with some difficulty.  In my opinion, our bodies age by our metabolism and what we choose to put in it; our mind ‘ages’ because of our personal experiences and understanding — it’s not all relative.   I’ve never been much of a political person and my theological training has always leaned more to the social side of dogma;  bias aside, should we all not be given the opportunity to age gracefully?

Unless you’ve lived in fear, you never really know what it feels like.  Many LGBT seniors live in fear of being outed, in fear of being mistreated, in fear of the type of care they received simply because of someones personal bias.  Some are fearful that their life long partners will be turned away at their bedside because of someone’s bias.   Think of being in a hospital, nursing home or an independent living center and living in fear because of someones bias?   The closet is no fun.

It’s concerning; having empathy for  bigot is simply a misplacement of morals.

While societal norms have adjusted in recent years, we are all products of our youth.  What is ‘accepted’ today, in most cases was not on the books when we were kids.  Imagine the climate that  an 80-year-old LGBT senior faced when they grew up in?  That is their reality.  We are all a product of the societal norms in which we grew out of; some grow out of it, some over come it, some don’t care about it, some live it their entire life, many are in fear of it.  Acceptance is a two-way street.

Having the experience as a caregiver himself  for  his partner Herman of 43 years for the last 9 years of his life, provided ‘The Little One” with a keen sense of his own needs as he ages gracefully.   (History aside, 43 years together is a feat, no matter what side of the fence you’re on!)     We are fortunate that we have not experienced bias in relation to health care, yet I carry my legal documents where ever we go because you just don’t know what or when you’ll need it.  However the legal documents don’t necessarily open all the doors to the closet.

We  started on this health journey just about a year ago when we had the first flare up with the esophagus while enjoying a meal with a number of friends in Indianapolis.  Over this past year, we’ve learned a bit about ourselves; we’ve  met some new friends, had some friends leave and we have grown closer.  In our diversity, we’ve all had one thing in common and that is  we’ve all aged gracefully,  I hope.  We can’t avoid the aging process, we just do it!

Care-giving will always be an honor; and just like his health…there are going to be some good days and some bad.    It is all about the attitude: every sunset should have its dream.

I think we can see Paris in the Springtime.

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Filed under advocacy, Advocate, Bow Tie Guy, cancer treatments, Caregiving, Dialogue, Esophagus Cancer, Humor, Jewish, LGBT Couples, may to december, oncology, Personal, PET Scan, SAGE, Senior Health, Spirituality, Theology