Category Archives: Esophagus Cancer

April 1, 2013 · 9:59 pm

“He’s My Miracle Patient!”


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“He’s MY Miracle Patient”  Dr. Milica Starcevic April 1, 2013

Today as we visited Richard’s primary care physician for his quarterly check-up. This is no April Fools joke, reality before our eyes, a miracle in the works!  BRS2

BRS3

BRS2

After reviewing all the blood work, checking in on recent history with his health, then receiving updates from both of us she just uttered these words:

“He Is My Miracle Patient!”

Given 3 to 4 months to live in October of 2011; In August of this year we will ‘celebrate’ 2 years since the original diagnosis of esophagus  cancer.  Like many families who go through a cancer diagnoses, we were filled with so many diverse emotions.  Now two years past, we are thankful for each and every day we spend together.  Sure some days are better than others, and the esophagus does ‘act-up’ from time to time; the tumor does have a mind of its own!

Being a family caregiver comes with quite a bit of sacrifice and courage, and just like ‘The Little One”, I have my good days and I have my bad days.  Sleepless nights, worrying about things that I cannot control and wondering what’s going to happen next.  It’s all part of the role of being a family caregiver. 

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Yet on a day like today, being a family caregiver is put into perspective  when Dr. Starcevic turned to me and said “thank you  for being a Caregiver.”  Those long nights, followed by those uncertain  days were a thing of the past by those simple words uttered by Dr. Starcevic!  Of course, a big smile from ‘The Little One Helped, too!

You see…We Might Have Cancer,

But Cancer Does Not Have Us!

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January 26, 2013 · 10:02 pm

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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September 18, 2012 · 10:13 am

“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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September 2, 2012 · 3:42 pm

What A Difference A Year Makes


Life is a succession of lessons which must be lived to be understood. Helen Keller
It was just one year ago that ‘The Little One‘ started his chemo and radiation treatments.  I remember one of my early blog posts during that first week of treatments entitled;  I’m Radioactive!  where ‘The Little One’ said ” I don’t care what you put into my body as long as it is going to help me beat this cancer.”

We learned that the first week of treatments is usually the easiest; we also learned six weeks later just how difficult chemotherapy was for  ’The Little One.’  What they put in his body was dreadful, yet it helped stop the spread of his cancer cells. Now a year removed from the start of his treatments,  ’The Little One’ still has his ups and downs, his good days and his bad days; we are enjoying life in the moment!   According to the American Cancer Society ”Survival rates are often based on previous outcomes of large numbers of people who had the disease, but they cannot predict what will happen to any particular person.”  (“Survival rates for,” 01).

“The Little One” was fortunate that the cancer was local and had not  metastasized. We live life in the moment, enjoying each day as an extended stay, not worried about tomorrow. Given three to four months  to live, ‘The Little One” has far exceeded anyone’s expectations (except ours!).  In 6 weeks, we will be one year past that diagnosis! He has already beaten the first survival rate indicated by the American Cancer Society which is quite an accomplishment for someone of his age.

Through our Caregiving journey we have  learned the meaning of true friends, and what is important in life.  While each one of us deals with the reality of cancer in a different way, each one of us wants to look on the bright side of life. Yesterday is gone, today is here, not sure about tomorrow. It is our hope that lets us withstand problems; it is our beliefs that let us find solutions.

Phase II of our Caregiving journey starts this September as I will be learning  a new chapter in my life;  How to take care of me!   Sounds selfish, but it is the reality that I must face.  Each one of us deals with stress in different ways.  I dealt with the stress of this past year by over eating and over thinking.  I thought I had it under control, but I was in too much control. In many ways, I am better at taking care of others than taking care of myself.  That is a paradox and may be a bit overstated, but that is my reality at the moment. Thankfully I am in a place to deal with it and fix it.

Caregivers are so focused on taking care of their loved one (caree), that we as caregivers often lose sight of self.  To be a healthy caregiver, we do not have to surrender our individuality, we have to  celebrate it!  

What are the (my)  keys to being a Healthy Caregiver?

  • Health < Healthy Caregiving Starts With You!
  • E <  Eat Healthy
  • A < Achieve Your Personal Goals
  • L < Live, Love and Laugh 
  • T < Take Time for Yourself
  • H < Heal Your Soul 
  • Y < Yearn To Care For Yourself As You Care For Others

Checking in at 250 lbs on September 1, 2012 means that I have gained 25 lbs since arriving in Florida in March and have put on almost half the weight I lost 10 years ago.  There is no blame to go around, just a stark reality of a life lesson learned.  The Helen Keller statement is so true! “Life is a succession of lessons which must be lived to be understood.”

A lesson learned is just shelf-life if the lesson is not put into practice! 

In order to be a Healthy Caregiver, I have no choice but to take better care of myself.  There is no better way than to own it, realize it and blog about it.  As The Bow Tie Guy transforms into The Healthy Caregiver;  the lesson that  I have learned is that I have to practice what I preach.   As a proponent of a holistic life of body, mind and spirit, I must apply those principles to myself, too…DUH!

What good am I to myself and the one I care for if I allow my  health  to fail?   

I hope you will continue to join us on our new Caregiving journey!

Remember…

…We might have Cancer; but Cancer does not have US! 

 Survival rates for esophagus cancer. (01, 2012 11). Retrieved from http://www.cancer.org/Cancer/EsophagusCancer/DetailedGuide/esophagus-cancer-survival-rates

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July 24, 2012 · 8:30 am

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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April 7, 2012 · 12:38 am

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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February 13, 2012 · 8:30 am

The Heart of Caregiving


Cancer came upon us in one full swoop.  Often times, we get into situations that are beyond our control…’things’ just happen, like Cancer.  Care-givers are often thrown into their roles on a moments notice.  Cancer or other debilitating illnesses do not arrive by invitation, they just show up at your door unannounced. When you think about it, no one wants their loved one to be ill, no one wants to see their parent, spouse, child or best friend ill.  Unfortunately, illness is a part of life that we all have to deal with.  At a moments notice you become a care-giver, without any warning, without any preparation, without any idea of what you are supposed to do next.  All of a sudden you are responsible for someones well-being because of their illness.    Care-giving is a tremendous, rewarding  and sometimes a frustrating experience, yet care-giving has meaning to it that is beyond approach.

While I do not often revert  to my theological training, I am reminded of the Corporal Works of Mercy which are, simply stated, the seven practices of charity towards our neighbor…

1. Feed the hungry: 2. Give drink to the thirsty: 3. Clothe the naked: 4. Shelter the homeless: 5. Visit the sick: 6.Visit those in prison: 7. Bury the dead.

I see the Corporal Works of Mercy as a job descriptions for caregivers.  There is an art in accomplishing these task and  and in accomplishing these tasks, one has to have a caring heart.  Care-giving is not a role for the faint of heart, it is not a role suited for everyone.  Just as we all have different talents, skills and life avocations, being a care-giver is no different.  The tryouts are usually on the fly and without much preparation, however care-giving is bound to have a profound effect on all involved in the experience.

One of the most important components of being a care-giver is that you  have a caring heart.  Sound kind of silly doesn’t it?  But it is true!   How many other ‘jobs’ monitor the feelings inside your heart?  Being a care-giver is not a ‘job’ to those who do it, it’s an avocation.    If  you are not truly concerned about the person you are caring for, then it might be a good idea for you  to take a close look at what you are doing for that person. There is a high rate of burn out in care-giving;  care-giving is an  intense experience where you often surrender your self for the needs of someone else.  Finding that happy balance is truly a slippery slope. The art of care-giving always starts with a feeling from inside heart.

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February 5, 2012 · 10:45 pm

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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January 23, 2012 · 9:48 am

“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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January 7, 2012 · 11:07 pm

Moving Forward


With no test scheduled until the middle of March, we look ahead thankful for the break from the radiation and chemotherapy, yet concerned as we move forward. Cancer takes so much out of everyone; its not a disease that leaves quietly, but rather lingers on in our mist.  Treatments are a necessity; aftereffects are unknown.

“The Little One” reminds me on a day to day basis  that he has lost a step or two.  Not wanting to admit it, but I see it too. We hold out so much hope for a full recovery, and in our mind and in our hearts, we know we have been given extended stay.  Why not make the most of it, even if its just a step or two slower?

Giving up control is such a hard thing to do.  (Where is that Tumor Extractor when you need it!)  One of the hardest things to do as a Caregiver is to give up control, but this is an essential element of being a caregiver.  We want to take control of the disease, take control of the loved one, take control of everything in our paths in order to provide the utmost care.  Yet it is when we give up control that we really care: What is here today, is gone tomorrow.  Yet in our thoughts and in our prayers, we only want to do what is best.

“The Little One” knows that he has lost a step or two; who wouldn’t after having 30 radiation treatments to go along with 6 sessions of Chemotherapy? I see it, too…but that does not detour us.  There will be good days, there will be bad days and there will be more days of beauty.  We can only go by how the day takes us, which in turn means giving up control and being free from what binds us!

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