Category Archives: Uncategorized

“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!

3 Comments

Filed under Advocate, Bow Tie Guy, cancer treatments, Caregiving, Esophagus Cancer, Health, Humor, Intergenerational, LGBT Couples, SAGE, Spirituality, Uncategorized

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!”

2 Comments

Filed under Advocate, cancer treatments, Caregiving, Chemotherapy, PET Scan, Uncategorized


Great information that I wanted to share with you.

boomermarketconsulting

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? 
  4. What professional organizations do they belong to? 
  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…

View original post 57 more words

3 Comments

Filed under Uncategorized

November – National Care Givers Month


November is National Care Givers Month!

 We all know some one who is a caregiver, whether we find ourselves taking care of a loved one, know someone who takes care of a loved one, or even if we have heard an inspritational story on the news.

 In today’s busy world it can be easy to forget to show our appreciation to those who make a difference in our lives and the lives of others everyday. As we prepare to celebrate another Thanksgiving, let us give thanks to those who choose to spend their days serving others.

“Appreciation is the highest form of prayer, for it acknowledges the presence of good wherever you shine the light of your thankful thoughts.”
Alan Cohen

1 Comment

Filed under advocacy, Advocate, Blog, Blog Admin, Bow Tie, cancer treatments, caregiver, Caregiving, Catholic, Chemotherapy, Christian, Dialogue, Downsizing, Eastern Medicine, Esophagus Cancer, Health, Hospice, Humor, Jewish, LGBT, LGBT Couples, Life, Life after Death, Live Love Laugh, Looking into the future, Love, My Life, oncology, Personal, radiation, SAGE, Senior Housing, Social Security, Spirituality, Theology, Uncategorized, Unconditional Love

Downsizing


While we know that the tumor has been downsized by the radiation and chemotherapy treatments, we have taken a long look at our personal belongings and have started the process of downsizing in this area too.  So far, the experience has been quite cathartic.

How much ‘stuff’ does one really need to be comfortable in life?  China that has never been used, kitchen gadgets (well, except for the Tumor Extractor!), glasses, roasting pans; yikes where did all this stuff come from?   And better yet… what really is the need?

Funny as it seems, when I was in the seminary those little rooms we lived in seemed so small…now as I look back at that experience, living austerely has its benefits.  Thomas Merton does know what he is talking about!

Cancer is a life changing experience for all who are involved in it.  We have grown closer because of the disease and have I have come to a reality check with my life.   You see, what is important is not how many items you collect, rather what is important is how many lives you touch.   The last few years I have lost touch with my own reality; cancer does have its peculiar benefits.

As the green leaves transition to beautiful autumn colors, we are in a transition mode as well.  What we do for ourselves dies with us.  What we do for others will ever be immortal.  I am honored and proud to be a caregiver, it is one of the most remarkable experiences in life.  I am also grateful for the reality check that our downsizing has provided to us.  May the ‘Little One’s’  health continue to improve; let the downsizing begin!

2 Comments

Filed under Acupuncture, advance directives, advocacy, Advocate, Blog, Blog Admin, Bow Tie, Bow Tie Guy, cancer treatments, caregiver, Caregiving, Catholic, Chemotherapy, Christian, Dialogue, Downsizing, Eastern Medicine, Esophagus Cancer, Health, Hospice, Humor, Jewish, LGBT, LGBT Couples, Life, Life after Death, Live Love Laugh, Looking into the future, Love, Medical Insurance, medical insurance, Medical Office, My Life, oncology, Personal, radiation, SAGE, Senior Housing, Social Security, Spirituality, Theology, Thomas Merton, Uncategorized, Unconditional Love

The Tumor Extractor just $19.99


We have all seen those gadget that they sell on TV… It seems that all those gadgets sell for just $19.99 and better yet, all these gadgets are a must need for every household!

As I was preparing waffles for breakfast this morning I came across a new product called ‘The Tumor Extractor’

20111106-082755.jpg
Simply apply to the area of the tumor and all your troubles will be gone!

‘The Little One’ and I enjoyed a great laugh when I presented him with our new ‘Tumor Extractor’ for just $19.99 and just think…we only spent $10,000 on chemo and radiation! (Of course Monty Python’s Spamalot is playing in the background.) Every cancer patient and caregiver wishes there was something as quick and simple as ‘The Tumor Extractor’ to remove cancer from the body. But what is available to every cancer patient and caregiver is hope, love, support and humor. That is the true Cancer Extractor!

While Each one of us deals with the realty of cancer in a different way, we want to look on the bright side of life!
Yesterday is gone, today is here, not sure about tomorrow. Today we are enjoying our new ‘Tumor Extractor’ even if it will only help us make waffles.

It is hope that let us stand problems…but our beliefs let us finds solutions.

Happy Sunday! And remember… ‘Always look on the bright side of life!’

7 Comments

Filed under Acupuncture, advocacy, Advocate, Blog, Bow Tie, Bow Tie Guy, cancer treatments, caregiver, Caregiving, Catholic, Chemotherapy, Dialogue, Eastern Medicine, Esophagus Cancer, Health, Hospice, Humor, Jewish, LGBT, Life, Live Love Laugh, Love, My Life, oncology, Personal, radiation, SAGE, Uncategorized, Unconditional Love

“Not Dead Yet” from Monty Python Spamalot


As we were enjoying breakfast this morning, I asked ‘The Little One’ how he was feeling…he uttered…”I am feeling a little stronger; I’m not dead yet!” Of course, we both broke into laughter as we knew we were referring to the song “Not Dead Yet” in ‘Spamalot.

If you are a fan of Monty Python, you know that their off-color humor usually hits a nerve, yet where would be without a little laughter in our lives? While cancer is a serious illness with far-reaching implications, humor, when used correctly, can lighten the burden of a stressful experience. The song ‘Not Dead Yet’ has wonderful lyrics and when seen live and in person on stage, you grasp the total meaning of the play on words.

Now that The Little One has been out of the hospital for a few days, he is starting to regain this strength; he is starting to feel a little better!  As the song goes… ‘I feel happy, I feel happy…I’m not dead yet…I can dance and I can sing…I am not dead yet…I can do the Highland Fling!

When The Little On realized what he had said this morning, it changed his whole perspective to the start of the day. I can only imagine how difficult this has been for him going solo for the first month of his treatments.

Today, there is a beautiful Florida sunshine outside, let there be sunshine and laughter on the inside! We carried this theme with us all day-to-day as we’ve traveled to  radiology and now to the urologist.

Laughter is the antidote to fear; why not live in laughter even, in these difficult days?

2 Comments

Filed under Uncategorized

The Paper in Hand or the Words From Your Lips?


Medical Directives, Durable Power of Attorney, Health Care Proxies are all important documents to have readily available when you or your loved one is working through the health care system.   These documents are equally important for non traditional families in order to establish communication between health care service providers as well as securing  visiting rights  for their partners and loved ones.

I was recently told of a story of a women who had enlisted her sister as her health care surrogate.  The health care surrogate did not agree with her sisters life style, denied her access to all her friends, instructed the staff to dress her  only in the clothes she had purchased for her only because the surrogate did not approve of her life style.   This cliff note version of this story is one of the saddest stories that I have ever been told in regards to heath care directives.

Imagine spending your life with someone only to be denied access to them because of someone’s bigotry? 

 

In my book, advocacy does not mean control, rather it means to stand up for your loved one in the manner in which they want to be represented

As ‘The Little One’ and Imuddle through the legal jargon in order to get him the best care plan possible,  these documents are critical to have in place.  I bring this topic up today to remind all of us for the need to have ‘all our ducks in a row’ because you just never know when you are going to need your medical directives, health care proxies and living wills.

However, it just makes sense that when a patient is of sound mind and body, a simple verbal permission by the patient should be sufficient to ensure communication between the patient’s advocate and the health care staff.  That is not always the case, which is way having the legal documentation in place is critical at these times.  Dealing with a critical  illness is difficult enough, having to worry ones advanced directives just makes it even worse.

 I am so proud of ‘The Little One’ as he fights to rid this disease from his body.   His determination to see this through is admirable; I am not sure that I would have the same strength and courage that he has demonstrated these past four weeks.     With just seven more treatments to go of radiation and one more treatment of chemotherapy, we are in the home stretch of this first and hopefully last round of cancer treatments.  There is indication that the tumor has shrunk, yet we will not know the results of the treatments until 30 days past the completion of the radiation and chemotherapy.

We will make it through these next 10 days and point to Wednesday October 5th…When ‘The Little One’ returns to our northern home

 

Leave a comment

Filed under Advocate, Blog Admin, Caregiving, Chemotherapy, Esophagus Cancer, Medical Office, radiation, Senior Housing, Uncategorized

Back On the Same Page


Earlier this week I posted about ‘mixed messages’ that we were receiving from the radiologist and chemotherapy in relation to the amount of protein drink that the little one should be drinking on a daily basis while going through his cancer treatments.  I am happy to report that we are now all are on the same page, it was just a minor philosophical difference in their treatment plan that needed to be tweaked.   Treatment plans are just that… plans; sometimes the game plan has to be changed in the middle of the game.  The key to any change in game plan is to have the proper data at hand so that intelligent adjustments can be made.   It is not unusual for professionals that have diverse opinions on how treatment plans should be administered.  What is equally as important is for those professionals is to  have the ability to communicate and change the game plan in order to have a winning formula.  Every game is different, as is every patient. Sometimes you just can’t go by the book, you have to make an adjustment in the middle the game. Earlier this week I had not intended to be critical positions as not meant to be critical of physicians, but rather to demonstrate the need for communication and consistency within the team. The physicians are the “managers,’… the caregiver is the ‘coach,’… the ‘patient’ is the player in the field;  if all three components of the team are not communicating properly, then the team is in chaos.  The coach is often the advocate between the manager and player.  Advocacy is the main role of a caregiver:  I am happy to say that we are now all on the same page!

The news continues to get better for ‘The Little One’ as we have had a number of good days in a row.  Lots of energy, eating well and good conversations with the staff at both the radiologist and the chemo-therapist this week.  We believe that the tumor has shrunk as food is going down the esophagus with a little more ease.  One of ‘ The Little One’s” favorite food is baked chicken and  until this week,  ‘The Little One’ not been able to enjoy baked chicken because of the tumor in the esophagus, it was just to difficult to get through the esophagus path: Quite a relief to enjoy something so delicious as your favorite meal without the worry of  pain as the food travels down the esophagus. How often we take things for granted like eating a moist juicy piece of chicken, until that delight is taken away from you by this insidious tumor.

We have now completed three weeks of the five week program. While it’s been an uphill battle, we are pleased with the progress that has been made. The unknown causes fear and trepidation, we certainly experience that during these past few weeks. We know more than we did three weeks ago, and I am sure that we will learn more over the next two weeks leading up to the completion of the treatments. The treatment plan calls for a 30 day reprieve from chemotherapy and radiation after the completion of the treatments in two weeks.  Once we are past 30 days from the last radiation treatment, ‘The Little One’ will have to go through the same set of tests that revealed the tumor in August. These tests  will reveal what the aftercare plan will be; we are hoping for the best!

As we move forward trying to cure the physical aspects of this disease, we are keenly aware of what this disease does to the psyche. While cancer affects all of us, the emotional roller coaster of having cancer can only be realized by the person who has the disease.  While we hope and pray that the chemotherapy and radiation destroys and obliterates the tumor, we are mindful that in order to successfully complete these treatments, there has to be a holistic component to the treatment plan. That is where our faith our family and our friends come in because it is through your love and compassion that we are able to make it through these treatment days.

 

Leave a comment

Filed under Advocate, Bow Tie, Caregiving, Chemotherapy, Esophagus Cancer, Looking into the future, Medical Office, radiation, Uncategorized

Mixed Messages?


Anyone who has had to deal with multiple (specialist) physicians at the same time know that is can be difficult to get  physicians to communicate and share patient information.     In my opinion, the perfect physician is one who takes the time to explain medical terms in common language, while collaborating with other physicians (who are on the same team with the patient) so that the information that is being delivered to the patient is consistent and  understandable to everyone involved with the patient; but most importantly.. to the patient them self. 

As ‘The Little One” enters into his third week of radiation and chemotherapy,  we have been getting mixed messages from some of our team members of physicians.    While it is agreed by all team members that “The Little One’ needs to add as much protein  to his diet as possible,  an issue came up this week that left us scratching our heads.   Just how much protein is enough...I guess that depends on who you ask!

Until you experience  chemotherapy and/or radiation,   you really don’t know what to expect.  ‘The Little One’ has had a roller coaster of experience over the past two weeks  because, as we know…’what goes in the body, eventually has to comes out of the body!

Which takes me back to the issue of the protein.   Both the radiologist and the chemo-therapist have suggested that “The Little One” drink over the counter protein drinks…Boost, Ensure…etc to help inject additional protein into his diet.   Yet here is the puzzlement…radiology suggested that “The Little One” drink as much as possible, while the nurse in  chemotherapy suggested no more than one a day?   “‘The more protein drink, the more likely for you to experience constipation”, said the (chemotherapy) nurse.  “Drink as much as you can as the protein drink will build strength, it is good for you” said the radiologist!

Confusing…YES!!!   Both “Team Members” believe their philosophy is correct; yet both Team Members do not have to deal with the after-effects of  chemo, radiation, or the liquid protein drink.   Remember…what goes in the body, somehow has to come out of the body.  The stress is only heighten when we receive mixed messages on how to resolve these uncomfortable symptoms of diarrhea and constipation …all at the same time!    Both of our team members are steadfast in their professional opinion; both of the team  only deal with the cause (cancer) not the effect (chemo/radiation etc) which makes me wonder, how this “team” should function?

prairie-679014_640-e1430319357812

Most successful teams work within a structure and communicate well; this team has to act in the same manner.  This week, The Team will be instructed to provide an updated care plan for  The Little One with clear directions on food and liquid intake; we will engage the dietitian as well.

We are two weeks into the process and there is a clear pattern on how The Little One is reacting to the treatments.  His best two days are Tuesdays and Wednesdays;   His worst days are Thursday thru Saturday as the Chemotherapy passes through the body. (The addition of the protein drink on Thursday thru Saturday only heightens the dualistic symptoms that he experiences on these days.)  Sunday and Monday seem to be the neutral days,  yet he is tired and worn out both mentally and physically from the  calamity of the chemotherapy passing through the body.

Good teams make adjustments, while listens to messages both verbal and non verbal, along with providing  consistent communication so that everyone involved in on the same page.  This is no time for individuality or for ego; no teams wins on mixed messages, no team wins as an individual.

We  continue to move forward with hope, with determination and most of all…with love.

Leave a comment

Filed under Advocate, Bow Tie, Caregiving, Chemotherapy, Esophagus Cancer, Medical Office, radiation, Uncategorized