Category Archives: cancer treatments

Be A Healthy Caregiver on Blog Talk Radio


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On Tuesday March 26th at 1:00 pm (est) we welcome Dr. John J. Garnand,  author of ‘Cancer Caregiver Roles: What You Need to Know’ to our show.  You can listen to our show by clicking here.

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Dr. John J Garnand

 

John is a lifetime educator, award-winning instructor in the general areas of business strategy, management operations and ethics.   Yet I am sure John will tell you that his most important role he has had in his life, is that of a Caregiver!

His book, ’Cancer Caregiver Roles: What You Need to CCRcoverKnow’ is John’s effort to pull together all the information that he learned over nine years of attending to his cancer patient loved one.  John’s book is well worth reading!

Through our conversation today, John will help us all learn how to ‘Be A Healthy Caregiver’ 

You can listen to our show live at 1:00 pm (est) by clicking here.

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Cannot listen live, NO WORRIES, all our shows are archived so you can listen at a time that is convenient for you by clicking here

Purchase John’s book by simply clicking  here

Visit John’s blog by simply clicking  here

Visit John’s Facebook page by simply clicking here

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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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“I’m between 81 and Death!”


If I had no sense of humor, I would long ago have committed suicide.
Mahatma Gandhi

We are three weeks into our FitPass program with Caregiving.com and the group is progressing along just fine. There are so many reasons why we put on weight; stress, poor choices, not seeing food as fuel is just a few of the topics that come up during our FitPass discussions on Monday night. While I have a long way to go in order to sort out why I have put on weight, I am pleased with the loss of 8lbs since we’ve started this program.

It just so happened that the ‘The Little One‘ had his own discussion on health and fitness with a nurse who came to visit him on Monday in our home. This visit was a courtesy of one of the many programs that his insurance plan has for him in Florida. (Hence another reason to be here full-time) While I missed the visit today, I certainly heard about it during our dinner conversation.

“I was given all these instructions on what I should be eating and how I should be eating. While I appreciated the concern and the information I was given, I just looked at her and said...I’m between 81 and death, at this point in my life and what I have been through this past year, what difference does it really make what I eat?” I’m sure he said this in a polite tone.

I mentioned ‘The Little One’s conversation this evening during our FitPass conference call and made the comment, “I’m the one who should have had that conversation today as it is my eating habits and fitness that is out of whack.”

The common denominator here is simple, it is about the perception of one’s quality of life.

‘The Little One’ can never be accused of not having a realistic view of his condition. Yesterday is gone — today is here — not sure about tomorrow. He has admirably lived by this motto for quite some time now. (Remember, he was given 3-4 months to live last October!) Like many people who are diagnosed with a life threatening illness, it’s not uncommon for a conversation to take place about Quality of Life. Quality of Life will have a different meaning for each one each of us. ‘The Little One’ has outlived everyone’s expectations; he is cognizant of what quality of life means to him. Who is it for anyone else to argue with him on this point? At this time in his life, eating one less scoop of ice cream or having one less helping of milk chocolate raisins is not going to do anything for him other than deprive him of a pleasure. I’d say ‘go for it and enjoy!’

Photo Credit: The Purple Jacket

The more I thought about his visit with the nurse, and the more I talked about it with our FitPass group, I realized that I have lost sight of what quality of life means to me. You see, as a Caregiver we get so wrapped up in the needs of our caree, we often forget about our own needs. That extra scoop of ice cream sure feels good when you’ve had a stressful day of Caregiving, work, life etc. However, that does not mean you have to have that extra scoop of ice cream every night!

Photo Credit: Wayne Dyer

In order to make healthy choices, we have to be aware of our options. With that, we have to recognize and own what quality of life means to us as an individual . For ‘The Little One’ that extra scoop of ice cream signifies an accomplishment and truly is a part of his quality of life; he has earned it! For me, my quality of life can not be tied solely to his, for in that, I lose my sense of self. (I.e. Weight Gain) How can I be a good caregiver if I am not taking care of myself?

While the nurse that visited our home on Monday was not there to see me, in reality the message she left…was solely for me!

You see…We might have Cancer…But Cancer does not have us!

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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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Amazement!


Photo Credit: Pinterest

As we continue to move forward with his aftercare, there is amazement on every side of the aisle. Our last report from the primary care doctor was terrific. She, like everyone else involved in his care, is utterly amazed at the progress that ‘The Little One’ has made since this ordeal started almost a year ago. I have been reluctant to blog lately, because quite frankly, I am amazed (and quite busy) too.

When ‘The Little One’ was diagnosed with cancer in late July of 2011, we started six weeks’ worth of treatments almost immediately. The outcome looked bleak back then, and in fact the doctors gave us little hope for the future when the diagnosis came in. ‘Three maybe four months” said the oncologist back in September of 2011.

It was at that time I made the conscious decision to withhold that information from ‘The Little One’ while telling the doctor ‘let’s wait and see how he responds to treatments.’ I never shared that conversation with ‘The Little One’ until after our last appointment with his primary care doctor just a few weeks ago. (If we are doing the math, that last appointment was in June; I was told in August of 2011 that he had 3 to 4 months. We are almost to a year since the first treatments….) Of course, I consulted with the oncologist on the decision not to share this information with ‘The Little One’ , and he agreed. “Let see how the treatments go and let him live his life to the fullest!” He has exceeded all expectations, and now his doctors want to do a case study on him.

Photo Credit: Pinterest

To withhold this information is a difficult judgment call that caregivers, spouses, doctors have to make on a daily basis. I made this decision based on one simple fact. ‘The Little One’ knew that he had cancer, and he knew that it was serious; I also knew that he was going to do anything he possibly could to beat the diagnosis. Why train the mind to think something is going to happen, when we really do not know when is going to happen?

This week, ‘The Little One’ will visit his oncologist for a quarterly check-up. I am confident that the oncologist will be pleased and say again….”Bern, you look great,” which ‘The Little One will reply, “ Yes, I’ve got a new embalmer!” Laughter is the best medicine, even in its most trying times.

What is left of the tumor is dormant and for all intent and purposes, his cancer is in remission. From the first day, we have taken this day by day. What else is there to do? Every case is different. My decision to withhold this information from “The Little One” was not an easy decision to make. After revealing this decision to him, he was glad not to know… even though he did know.

Photo Credit: Pinterest

In a sad, but beautiful twist of fate, ‘The Little One’s lifelong friend Jill has recently been diagnosed with cancer. Like our first report, Jill’s first report has us all concerned. What is beautiful about this is how ‘The Little One’  is able to transfer his experience of this insidious disease to Jill… to encourage her, to console her, to simply be there for her.  This gift of encouragement is one of the best gifts that one can give to a friend.

We send out a big hug and hello to our friend Doug in STL who is going through treatments at this time.  We are thinking of you Doug!

 Remember…We might have cancer…But cancer does not have us.

Photo Credit: The Purple Jacket

As you have noticed, we have taken a break from Blogging on ‘The Purple Jacket’ for the past few weeks.  As I transition into a new job and into a new academic program at Gonzaga University, “The Purple Jacket” will be taking on a new look too.   We will continue to provide you updates on ‘The Little One’ as this blog is really dedicated to him.  Yet in future weeks, we will expand the content of the blog to discuss the effects of Caregiving on the caregiver.   What is often overlooked in Caregiving is the importance of the health of the caregiver.  Personally, I have had to take a long hard look at this issue, and have come to the conclusion  that the best way to deal with this issue is to blog about it.  In essence, there is a real purple jacket.  I just can’t fit into it any longer.   We have to explore the issue of what it means to be a healthy caregiver!

Photo Credit: Caregiving.com

I am BIG fan of Caregiving.com  The community on Caregiving.com is just tremendous and Denise Brown who is the proprietor of this wonderful website, is an expert in the field of Caregiving. You want to be sure to check out Caregiving.com and become a part of the Caregiving family too!  Follow Denise on Twitter @caregiving and on Blog Talk Radio, too!

WE will also be exploring a new communication theory entitled ‘The Theory of Empathic Communication” in an upcoming blog posts, as well as our Phone A Friend program at SunServe Social Services.  We will also be chatting about a great program at the Pride Center in Fort Lauderdale, Coffee & Conversation which takes place every Tuesday morning at 11:00 am in Wilton Manors, Florida.   I will also have some speaking engagements to announce in August and September.  Coming soon,  ‘The Bow-Tie-Guy’ on Blog Talk Radio!  

Photo Credit: The Bow-Tie-Guy

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Caregivers…”Never Alone”


One of the many things that I have missed while being away from Fort Lauderdale for the past four years has been congregation at The Sunshine Cathedral .  While attending worship services this past Sunday, the senior Pastor  Reverend Durrell Watkins,  preached on a topic that really hit home for me: his sermon was entitled, “Never Alone”.

What I know is that prayer connects us to all the prayers of eternity and to all the people who have ever prayed and so the very act of prayer is a reminder that we are not alone, and if we are not facing the challenges of life alone, then hope, peace, and joy are always possible and that’s pretty miraculous.”   Reverend Durrell Watkins Sunday April 22, 2012.

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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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“Because They Are Nice”


As we continue to recover from the chemo and radiation therapy, we often reflect on ‘how things used to be’.  Always willing to be on the go, ‘The Little One’ has taken a wait and see attitude on many of the things he used to like to do.   While there has been steady progress in his overall health these past few weeks, we are really on a ‘day-to-day event planner schedule.

Crowds has never been his thing, even when feeling good.  So approaching his 81st birthday, I was puzzled at what might we do?  And…if we would be able to do it!  With a small gathering in Brentwood, ‘The Little One” was greeted by ‘The Sisters’ and a couple of friends from our Tuesday night group at Pietro’s.   (of course, one sister forgot to make it)

What struck me about the evening was not so much about the significance of the day, but rather the engagement in conversation of “The Little One.”    I will be the first one to admit that I can be a little worry wort and always have one eye out for him, yet on this night I glad that I did because I saw a person return to life in a way that was good to see.

You see, cancer can take the root out of your being. Cancer drains your energy, it drains your confidence and it drains your piece of mind.  It is easy to understand why so many people give up, that is why outside support is so important in the healing process.  What I saw on Saturday was a man who enjoyed talking about topics that were important to him, all removed from the thought of having cancer.  When the topic turned to the Virgin Islands, well…he was off and running. You can’t go through 81 years of life without having special memories of people, places and things.   It was a joy to watch him revel in the conversation.

When we talked about his ‘engagement’ at the gathering, I mentioned to him that it was great to see him involved in conversation that was important to him and completely outside to scope of health, cancer and the rest.  He too, acknowledged that it was a great experience, with lots of fun  and easy to talk to ‘because they are so nice.’

What “The Little One” learned on this evening is that its good for him to be in conversation on topics that he enjoys as it takes his mind of the health concerns.  What I learned is that I cannot be mother hen, worried about every step in the road.   We live day by day.   Often times we go through life with so many misunderstandings, so many unresolved conflicts and so many worries that seem unbearable.

Yet when you think about it, it is easier to get through the day simply when people are nice!

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A Day of Beauty


With so much seriousness over the past few months dealing with Cancer, it is time to relax, reflect and be thankful for our time together.

So what does one do with ‘A Day of Beauty’….

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Beauty is in the eye of the beholder; we are thankful for our time together. No matter what the future has in store for us, we will forge ahead. Because in our heart and in our mind, everyday is a day of beauty!

Happy New Year from ‘The Purple Jacket’

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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