Thankful!


We have plenty to be thankful for today on this beautiful Christmas morning and wanted to share our gratitude with you.

Our journey has just begun; pleased with the outcome of the pet scan we still have a long way to go in order to build up strength in order to keep the big ‘C’ at bay. We have quite a bit more work to do!

For all those who are experiencing the trauma of cancer in your life know of our heart felt love and support.

For all the care givers know that your love and commitment never goes unnoticed!

Merry Christmas to all and
‘Thank You’ for reading ”The Purple Jacket.’ We look ahead with anticipation, courage and thankful for the love and support of our family and friends.

We have cancer; but cancer does not have us!

Merry Christmas, Happy Hanukkah and peace and love to all.

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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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Anticipation


That Carly Simon song in the late 70’s ‘Anticipation’ comes to mind this evening as we prepare for our 9:15 am appointment with the oncologist on Friday.   We’ve done all the rounds this week: PET Scan on Monday, Cardiologist on Tuesday, Primary Care Physician on Wednesday we have been on the go constantly since we left St. Louis last Friday.  Today, we rested!   Yet the appointment with the oncologist is ‘the big one’. ..’Anticipation…it’s making me wait!’

While all the doctors we’ve seen this week have given us high marks, the Primary Care Physician was steadfast in her recommendation.   “Focus on your cancer treatments, everything else looks great.”

The human body sure is a funny place to live.  One of the positive outcomes of this experience is that ‘The Little One’ is off his diabetic medication.  So in essence, we’ve made a trade…Diabetes for Esophagus Cancer!   Tomorrow we’ll see just where we stand in this ‘trade’.  This ‘trade’ can prove to be beneficial with a good report on Friday from the oncologist.

“Anticipation…it’s making me wait!”

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Cardiologist…Day Two…


While we know that the tumor has shrunk, we also know that the tumor still have its ‘activities’ within the body.  Like a rumbling volcano, the tumor will react to certain foods and hard swallows.  ‘The Little One’ really has to be careful on how and what he eats, or else he’ll have an ‘eruption’ filled with gastric acid and sharp pain.

The location of tumor has made it difficult for us to decide the origin of  the sharp pain, hence the need to see the cardiologist.  Pleased with the weight loss, the cardiologist went about his work in the most pleasant of ways.   The EKG showed that the heart was in good shape and that the pain that ‘The Little One’ has been experiencing is directly related to the tumor.

Of course, these are all scientific speculations and based on his years of experience as evidence from the EKG.  While there is relief in this news, that fact of the matter is that the pain still is a part of his every day life.    As we age, we all have to accept the little bumps and bruises to our health that come along in life.

Each one of us handles those little bumps and bruises in a different manner, and my suspicion is that those of us who have a healthy acceptance  of our health calamities,  tend to fare better with their reality than those who don’t.  I certainly see a healthy attitude of acceptance in “The Little One”.

Acceptance goes a long way in building a healthy attitude.  Of course, we have our bad days and ask ourselves…’why me’…that’s just a part of human nature.   The lesson that I have learned from this experience  while watching  ‘The Little One’s’ attitude  is to simply just give up control;  but boy…do I have a long way to go with that!

Just like the doctors who can’t control the outcomes of the test, we can’t control the reality of disease. We know that the tumor has shrunk, but we also know that the tumor is still causing some issues.  Yet what we can control is how we react to the pain and issues that it creates,  and that my friends,  is where the secret lies.

 

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PET Scan… Day One


 

Our drive to Florida was uneventful; today all the events begin.

“The Lit20111212-095007.jpgtle One” is now in enduring his second PET scan which will take just about an hour and a half to complete. As we left the house today (sunny and 80 degrees in Florida…what were we thinking four years ago!) we talked openly about the events of this week and how we will go through this process together.

I am amazed at how brave he is as he goes through these tests. For someone who claims to be non-spiritual, he is grounded in his thoughts and accepting in his realty. There is a calmness in him that is truly remarkable: I am honored to be a part of this process.

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Being in a ‘mixed’ relationship (Jewish /catholic) which also happens to be inter-generational (May to December) poses for a lot of interesting experiences and conversations. Yet in all my years of seminary training and ministerial experiences, I have never come across someone like ‘The Little One’ who has dealt with his health calamities like he has.

There are no lamentations, no blame; just an acceptance of the reality of life. For someone like me who has a bad habit of worrying about things that I can’t control, his sense of spirituality has been a lesson that no seminary was able to teach me.

At the end of this week, we will have a better understanding of where this chapter in our lives is leading us. We can’t control the results and you know, that’s OK because the best way to deal with the results is with a clear sense of reality. The serenity prayer comes to mind!

Life is meant to be lived; don’t let love and commitment pass you by, no matter what shape or form it is in.
When there is love, there is a sense of spirituality that is not defined by religious beliefs or society norms. It’s just two people, who’s roads collided to be as one.

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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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A Night with Opera St. Louis


Wednesday night we had the pleasure of listening to a couple of performers from Opera St. Louis. With ‘The Little One’ being a big fan of Opera, I knew we were in for quite an enjoyable evening.

As we were preparing for the festivities, I heard the ‘The Little One’ say in the distance…”well, this should be interesting”. Curious, I peaked in to the bedroom to see what he was he was talking about; his dress pants!

Once I saw him holding up the pair of pants, I knew exactly his concern. With a weight loss of over 35 lbs, we both knew these dress pants were not going to hug the hips.

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Thank goodness for suspenders!

When he put the pants on, we were both amazed at how much weight he has lost. He has easily lost four pants sizes! (I now need to do the same)

While his weight loss is good for his overall health, they way it has happen is certainly not one of those fad diets you see on TV!

The second PET scan has now been scheduled for December 12 in Fort Lauderdale; we will be heading south in just a little more than a week. We are anxious to see where we stand with the tumor and the only way for that to happen is to conduct the follow-up PET scan.

While the PET scan might give us the physical facts of the tumor; we will not be held back by the results. We are moving ahead with our heads held high.

You see, we might have cancer… But cancer does not have us! We are putting money away for a trip to Paris in Spring of 2012. I have never been, ‘The Little One’ has been three times!

Live each day like it is your last; care for those who are always by your side!

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Great information that I wanted to share with you.

Nancy Brain's avatarboomermarketconsulting

Geriatric Care Managers are trained professionals who can provide resources, support and help create a care plan that will maximize the independence of the care recipient and help with all aspects of the caregiving process.  The following are helpful tips to use when deciding on which Geriatric Care Manager to use.

  1. What services are provided?           
  2. Is routine monitoring an option, and if so, how frequently and at what cost? 
  3. What is their Code of Ethics? 
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  5. What is the professional accreditation of the organization? 
  6. What other professionals are available to assist and support? 
  7. How do they supervise and monitor the quality of services recommended or provided? 
  8. Are you comfortable with the care manager and feel that you could trust them with sensitive and confidential information? 
  9. Is there a waiting period before beginning services? 
  10. Is 24-hour assistance available? 
  11. What is considered to be a crisis…

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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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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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