Category Archives: cancer treatments

It’s Never Too Late To Start Over


We may encounter many defeats, but we must not be defeated!~Maya Angelou

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I graduated from radiation treatments!

Our second bout of Cancer started to unfold when we were discharged from Imperial Point Medical Center in early October with the news that TLO’s cancer had entered his spine.   It was a somber drive home that warm Saturday afternoon knowing that three tumors were lurking on his spine;  the added ordeal of facing more radiation just exasperated the diagnosis. Those first few days home after the diagnosis  was quite difficult… For both of us.  I’m still not sure what was worse; the revelation of what was inside of him, or the anticipation of starting the rigorous treatments that were in front of us?

Caregivers know that through all the turmoil, we hope for a ray of light toHoldTight shine through our Caregiving day, to take the edge off so to speak.  Our ray of light happened this week as TLO completed his six weeks of radiation treatments.   Those six weeks were like riding a roller coaster, or maybe one of those amusement rides that spin you upside-down.  (I always hated the ones that went upside-down)  It is hard to get a handle on your day when your day is in constant motion.

Never too LateDuring these last six weeks, there has never been two days alike; Cancer kind of does that, we’ve learned! We wake up each day not knowing how the day will enfold; Cancer kind of does that, we’ve learned! We look back at these past six weeks and wonder, “how did we get through this mess;” Cancer kind of does that, we’ve learned! We really don’t know what lies ahead of us; Cancer kind of does that, We’ve learned!  It’s never too late to start your day over;  Cancer kind of does that, we’ve learned!

Completing radiation treatments is  significant because it allows us to start Certificate side (2)over again.  There are no more treatments, nothing else to do other than to let the healing process start!     Sure, there will be a follow-up  MRI and CT scan to see the results of the radiation.  However, we have no control over what those results will entail.  We can only control how we feel, and how we will deal with those results.  

There is no doubt that this round  radiation has taken its toll on TLO.  For him, dealing with going to radiation on a daily basis is more difficult than dealing with the fact that he has cancer.    I find that revelation difficult to understand, but so thought-provoking!  It’s important to remember that we are wearing different shoes on this journey.

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 As we move into a different phase of our journey, we continue to hope for a gentle breeze at our back.  We’ve done what we could do to combat the tumors, we’ve made the proper adjustments to our care team and we are thankful for the great staff at the South Florida Radiation Oncology in Coconut Creek and Emerald Elite Senior Home Health Care in Wilton Manors .  I’m grateful to the Executive Director at SunServe, Mark Ketcham and my colleagues at work for their support and understanding.  Our extended family at Caregiving.com, where would we be without you?

As a Caregiver, we often think that we can go at it alone, that we don’t need any help.   While we have the ability to start our day over, it makes it easier to start our Caregiving day over when we have passengers to help  guide us through the journey.  I’m thankful for our Care Team!

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

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Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

 

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Whose Journey Is It?


 The longest journey you’ll ever take is from the head to the heart. Regina Rosenthal 

As we come to the end of the 5th week of palliative radiation treatments, the word ‘journey’ keeps resonating with me.   Our recent journey with Hospice of Broward County proved to20131023-101238.jpg be bumpy; we’ve moved on from that  bumpy road and have brought in new ‘friends’ to help us continue on with our journey, we’re hoping for smooth sailing as we forge ahead on our ‘new’ path.

There are so many components when planning a journey.  GPS devices have become the fad; some might even spread out an old fashion map on their kitchen table to highlight the path of the journey.  Planning a Caregiving journey is a little more difficult than planning a road trip, or is it? 

ID-10030063When we are planning a journey, there is usually someone who is in charge, a leader, guide, pilot, etc.  All those fancy electronic devices that help plan a journey, goes for not if there is not a leader orchestrating the plan.  The lesson that I’ve learned during our recent Caregiving journey is that I’m the co-pilot, ‘TLO’ is the pilot. ‘TLO’ is the one going through the radiation treatments, ‘TLO’ is the one taking the medicine…’TLO’ is the one that has the cancer inside of his body.  For me to assume that I know how he feels, pales in comparison to his reality of his health and how he feels.

There is no doubt that we are both on this journey together; we share in the emotions, we share in the joy and we share in the sorrow during this journey.  We both know that there is a fork in the road that lies ahead of us that no Map or GPS will detect. We also know  that trying to dodge that fork in the road will be  unavoidable.    The ‘funny’  thing about that fork in the road is that at some point in our life, each one of us will find its path and end up at the same destination.  As Caregivers, we try to pave the road so that when that fork does arrive, there is a gentle breeze at our back.  Caregiving is often filled with so many raw emotions that sometimes we forget that we are on a beautiful journey together.    That’s why sometimes the longest journey that we will ever take is from the head to ID-10047257the heart.

While we know that fork in the road will take us on a different path, we understand that at some point, we will end up at the same destination. For now,  we will continue on our journey together as pilot and copilot creating, and enjoy, that  gentle breeze at our back that no map or GPS device can locate for us.

Thank You for being our copilot’s; we are pleased that you are on this journey with us helping us create that gentle breeze at our back!

You see…We might have cancer, but Cancer does not have us! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

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‘Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

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Whose Journey Is It?


 The longest journey you’ll ever take is from the head to the heart. Regina Rosenthal 

As we come to the end of the 5th week of palliative radiation treatments, the word ‘journey’ keeps resonating with me.   Our recent journey with Hospice of Broward County proved to20131023-101238.jpg be bumpy; we’ve moved on from that  bumpy road and have brought in new ‘friends’ to help us continue on with our journey, we’re hoping for smooth sailing as we forge ahead on our ‘new’ path.

There are so many components when planning a journey.  GPS devices have become the fad; some might even spread out an old fashion map on their kitchen table to highlight the path of the journey.  Planning a Caregiving journey is a little more difficult than planning a road trip, or is it? 

ID-10030063When we are planning a journey, there is usually someone who is in charge, a leader, guide, pilot, etc.  All those fancy electronic devices that help plan a journey, goes for not if there is not a leader orchestrating the plan.  The lesson that I’ve learned during our recent Caregiving journey is that I’m the co-pilot, ‘TLO’ is the pilot. ‘TLO’ is the one going through the radiation treatments, ‘TLO’ is the one taking the medicine…’TLO’ is the one that has the cancer inside of his body.  For me to assume that I know how he feels, pales in comparison to his reality of his health and how he feels.

There is no doubt that we are both on this journey together; we share in the emotions, we share in the joy and we share in the sorrow during this journey.  We both know that there is a fork in the road that lies ahead of us that no Map or GPS will detect. We also know  that trying to dodge that fork in the road will be  unavoidable.    The ‘funny’  thing about that fork in the road is that at some point in our life, each one of us will find its path and end up at the same destination.  As Caregivers, we try to pave the road so that when that fork does arrive, there is a gentle breeze at our back.  Caregiving is often filled with so many raw emotions that sometimes we forget that we are on a beautiful journey together.    That’s why sometimes the longest journey that we will ever take is from the head to ID-10047257the heart.

While we know that the fork in the road will take us on a different path, we understand that at some point we will end up at the same destination, just at different times. For now,  we will continue on our journey together as pilot and copilot creating, and enjoy, that  gentle breeze at our back that no map or GPS device can locate for us.

Thank You for being our copilot’s; we are pleased that you are on this journey with us helping us create that gentle breeze at our back!

You see…We might have cancer, but Cancer does not have us! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

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‘Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

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Hello and Please, Come In!


Before I refuse to take your questions, I have an opening statement…Ronald Reagan

20131023-101238.jpgAs we walked into the office at the radiation oncologist this morning TLO proclaimed to the staff ‘ I’m here, let the games begin!’ Of course his ‘proclamation’ was greeted with a big smile by the staff as he sat down in the waiting room waiting for his time in the radiation ‘whirlybird!’  We are trying to find as much humor as possible as we can during this trying time. 

The current plan of radiation treatment is focused on the tumor which is located in the cervical part of the spine. This is the area where TLO is experiencing the most amount of pain and discomfort. Because of its location, this is the tumor that is of the greatest concern.    The last two nights at home have been difficult for him.  The pain across his back makes it difficult for him to lay down comfortably in bed, sometimes the recliner is the most comfortable spot for him.  The most important part of this process is to alleviate as much of his pain  as possible.  So, where ever he feels is the most comfortable spot for him, I’m all for it!

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Our New Curtains 

After yesterday’s treatment, we went for an ice coffee and found ourselves in a department store looking at curtains of all things.  I can’t remember the last time we were even in a department store!  TLO wanted new curtains for the dining room, ‘why not’ I said!   In between his naps yesterday, I hung the curtains which lead to a conversation this morning prior to our departure for today’s treatment.  ‘Thanks for agreeing on the curtains, don’t you think they are beautiful,’ TLO said.  ‘Of course they are because you picked them out,’ I said with a smile. ‘It’s important to have things that you want, isn’t,’ he said? ‘Of course so,’ I replied. ‘If there is anything you want, I will do my best to get it for you!’

Nothinggoesaway As we have progressed through the first few days of the radiation treatment, we know that we are just starting to scratch the surface to our emotions, our fears, and our determination.  Today’s session has taken quite a bit out of TLO as evident by how terrible he is feeling this afternoon.  We know that Cancer is an unwelcome guest in our home, but this unwelcome guest has brought with it the ability for us to draw closer, to dig deeper into the surface of our emotions and fears, while strengthening  our determination.    I guess there is something to learn from an unwelcome guest!

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

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The Call For Hospice


Love And Compassion are necessities, not luxuries. Without them humanity cannot survive.   Dalai Lama

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As we move into the second phase of palliative radiation treatment for TLO, it was important for both of us to bring in our ‘friends’ from Hospice of Broward County to help us in this journey.  The Hospice team arrived promptly at our home on Friday, thoroughly explained the process to both of us, it was peaceful as  we signed on the dotted line.

I used the word ‘friends at Hospice’ because that is what they are, they’re our friends.  We welcome friends into our home and we cherish the time that our friends come and visit with us. We look at these new friends and thank them for being a part of this journey with us.

We are also cognizant and want to recognize our ‘old’ friends too.  Sometimes when the word Hospice is used, there is that utter silence or that blank stare …that sense of ‘what do I say next’ …know that we understand that for some, the hospice conversation might be difficult.  That’s OK too! Because…

Sometimes

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Just being there is all that is needed! 

 windingroad We don’t know what the road ahead looks like for us. Sure, there will be a few swift curves, some winding roads and a missed turn or two.  Yet it will be all of our friends who will help celebrate this journey with us.  We’re realistic, but encouraged: We’re scared, but courageous.  We know we cannot do this alone. We’re thankful for all our friends and we are respectful of your comfort zone too.  Your thoughts, prayers, phone calls, e-mails, words or encouragement are most appreciated.  Because you have remember…

 We Might Have Cancer, But Cancer Does Not Have Us! 

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Filed under Cancer, cancer treatments, Hospice, LGBT Seniors, oncology

Never Alone


That Which Does Not Kill Us, Makes Us Stronger.                         Fredrich Nietzche

As we move into the second week with the news of the cancer spreading to TLO’s spine, we are grateful for all the wonderful words of encouragement, the expression of love, along with the care and concern shown to us.  Yes, the news hit us hard last week, yet each day we have gotten stronger because of so many of you who have reached out to us. We are grateful for your attention; it is important for us to know that we are Never Alone.

This past Thursday we had our initial consultation with the radiation oncologist; our next scheduled visit with the radiation oncologist is on Tuesday of this coming week.  With three tumors on his spine located in the Document1Cervical, Thoracic, and Lumbar region, the radiation oncologist is going to be aggressive with his treatment plan, yet cautious because of the location of the tumors.  The visit on Tuesday will determine if the radiation oncologist will be able to ‘shoot’ one or two tumors at the same time.  We are anticipating 14 to 21 days of radiation.

As the week has moved on, we have both adjusted to the difficult news, and what lies ahead of us.  A good friend of mine asked me this past week, “what is the time frame that the Doctor gave you?”  Knowing what he insinuated, I reminded him that two years ago the oncologist told me that ‘TLO’ had “three, maybe four months to live.”  Now two years past that original diagnosis, we have learned to take predictions in stride and deal solely with reality.  We have cancer, we know it is serious, each day is a gift.  We have run with this philosophy for the past two years, there is no reason to change it now.

The reality of the diagnosis has allowed us to have some very meaningful conversations between the two of us.  One of the conversations we had this week centered on the need to have a consultation with Hospice.  We look at Hospice in a positive sense, not a death sentence.  Hospice is not a place where you go to die, but rather a wonderful program that celebrates life. 1185347_10200667183346858_491171639_nHospice does not shorten lives, Hospice helps people live as pain-free as possible.  What Hospice does help accomplish is the facilitation of the natural course of life.  Hospice is inclusive of the entire family, bringing care and comfort to all involved.  The sooner Hospice in engaging in the process, the better the experience will be for everyone.

As Caregivers, we often get caught up in the mindset that we can do this alone.  I think that is even more so for LGBT couples who fear discrimination and bigotry.  It is one thing to experience this feeling in a public setting, unbearable to have someone bring those feelings into your own home.  We both have previous experience of waiting too long to call for assistance.  As we move forward with his palliative radiation treatments, it only makes sense to have this added benefit with us.

As the week has moved on, TLO has regained some strength and continues to try to be as independent as possible.  When I look at him, I am frustrated because I cannot see what I know is inside of him.  We had a trip to the grocery store, he has been out to lunch and to dinner, and he is chatting on the phone with friends.  What is so different about today from last week? TheID-10079215 only difference is that we now know what has caused his pain, now we have to respond to it.  In a sense, the diagnosis is a blessing because now we know what we are up against and can have a plan of attack.  We move forward with the same vigor, hope, and reality that we did two years ago.

We learned two years ago from the original diagnosis that we cannot predict the future. We have also learned this past week that are Never Alone!

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

027Mardi Gras 2013 

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Tumors Have No Boundaries


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One of the insidious parts of (most) cancer is that it is often sight unseen. Sure, the naked eye can see the wear and tear that chemotherapy andeyecheck radiation takes on the body, but those nasty tumors live rebelliously inside one’s body without a hint of what they might do next.

We are in the midst of experiencing the rebellious side of that nasty tumor that sits inside The Little One’s body. Not knowing what it is going to do next, the tumor has decided to showvirius its ugly head at night when you least expect it. “I can’t lay on my side, it’s too painful” he said…”What do you think is causing the pain” I asked…”Heaven only knows” he said…”But I can’t sleep laying down, I am so worn out from all of this,” he said!

Amen to that!

While we are grateful for the good health that The Little One has had since his diagnoses and subsequent treatment in 2011, however it has occurred to me that this unwelcome visitor to his body has no boundaries! We are always talking about setting boundaries in our life, yet this tumor has a mind of its own. It is as rebellions as a teenager. It wake when it wants to and does what it pleases; what an unwelcome guest!

Resting peacefully this afternoon after a trip to the Primary Care Physician today, The Little One takes these bumps in the road with utter peace and calm. I cannot photo (2)say that has been true for me today. He deals with the pain; I want to take it away. He is realistic; I am pessimistic. I want to help, but what can I do other than offer care and comfort? There is no bandage to apply, there is no fever to check, and there are no other signs of him needing help. That is one of the craziest parts in this process, and that is exactly what this is… a process!

Seeing is always believing?

Sure, the next new pill we will be trying this evening might put a fence around the tumor in hopes that it will limit its boundaries. However, I would prefer023 to goon it up with a crosscheck and a boarding penalty in order to enact some revenge on something that I cannot see. (Thank Goodness hockey season is upon us!) While with both know the reality of his cancer, we are both aware of the uncertainty with his cancer as well: what a paradox!

The most important thing that I learned today as we traveled together on another part of our Caregiving Journey is that I have to be there to be supportive, to share information, to advocate for the one I care for, and the one that I love. Caregiving was never meant to be easy, but we can make it easier on ourselves by talking about our fears, by being present to our needs, while being an advocate for the one we care. Thankful for the support at work, family and friends across the country and especially my extended family at Caregiving.com for checking in on us today!

Even though the insidious tumor may not want to set boundaries, we can stifle the tumor control over us by simply being realistic and present to each other. Easier said than done, yet possible because you see… We Might Have Cancer, But Cancer Does Not Have Us!

Chris MacLellan is a Caregiver to his partner Richard Schiffer; the Coordinator of Senior Services for SunServe Social Services in Wilton Manors, FL.; and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.

cjmbtr (1)Tuesday’s at 1:00pm (est) /Thursday’s at 8:00 pm (est)

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Filed under cancer treatments, Esophagus Cancer, LGBT Caregiving

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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Filed under Advocate, Be A Healthy Caregiver, Blog Talk Radio, cancer treatments, Caregiving, The Bow Tie Guy

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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