Category Archives: radiation

PET Scan… Day One


 

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

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

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

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

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

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

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

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Filed under Caregiving, Esophagus Cancer, Jewish, LGBT Couples, PET Scan, radiation

On the Road Again…


Florida bound: we are on the road again!   With a plethora of test scheduled for next week, we hit the road Friday afternoon for the journey south.  ‘Why not fly’, a good friend said to me this week.  While flying would get it there  “lickety-split,” there is a sense of relaxation in the drive.

In the hustle and bustle of care-giving, advocacy, work, family commitments and the such, time tends to fly by without notice.  ‘The drive, while annoying at times, allows us to have great conversations free of distractions.   I find driving to be relaxing and as all caregivers (should) know, when you have a chance to find some times to relax…take it!

Speaking of relaxing, I had the opportunity to take in a hockey game this past week.  As an avid hockey fan and former season ticket holder, I have not had the opportunity to attend many games in person over the past few years.  Yet I was treated to a game this week between the St. Louis Blues and the Detroit Red Wings.   Out of all the sports I played as a kid, ice hockey was by far the most fun. (Must be the Canadian in me!)  I grew to love the sport at an early age when the NHL expanded to 16 teams in the late sixties.   Still waiting for our first Stanley Cup; I’ll always be true to our boys in Blue!  

The night at the hockey game reminded me about how important it is for caregivers to find some ‘me’ time.  While it is an honor to be a caregiver, to be on the top of your game, you have to care for yourself, too.   Attending the hockey game was a treat and it allowed me to relax, enjoy and refresh.   Often times as caregivers we forget to care for our self; if we can’t care for ourselves, how can we care for the one we care for?

This is not to say that “The Little One” did not have his time in the spotlight this week.  One of his most difficult decisions this week was to decide what Phosphate to have at Dr. Jazz Soda Fountain and Grill in Webster Groves, MO.  Decisions, Decisions… Why not have…both!

As we motor down the road this weekend to Florida, we will jump right into some important medical test on Monday.  The second PET Scan is scheduled for Monday morning at 9:30 am.  The PET Scan will give us with a clear picture of how the radiation and chemotherapy attached the cancer cells; we will have the results by the end of the week.  While ‘The Little One’ has shown great improvement over these past six weeks,  we are anxious to learn what the next part of our care plan will be  as we move forward to defeat this disease.

Just as we both have had choices to make this week about mundane things like attending hockey games or what flavor of Phosphate to have; we also have choices to make on our care plan as we move forward with beating this cancer.  No matter what the results are this week from the PET Scan or other medical test we endure this week; we still have choices in our care.     Having a care-giver or better yet, having cancer does not take away from our ability to make choices.  Independence and personal choices are essential components in order to age gracefully.  No one should be denied the ability to make their own choices, yet to make the best possible choices in our lives, we have the have the pertinent information at our disposal.  Hence the need for the follow-up test next week.

We embrace the upcoming week with anticipation  knowing that we will have the ability to make choices that will fit into the needs of “The Little One.”   Without choices, there is no independence…without independence, there is no hope.   While we can’t control the outcome of the results, we can control how we respond of the results!   It is through the ability to make choices that we gain our independence from the cancer, no matter what the outcome might be.  

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Filed under Love, maytodecember, My Life, radiation, Spirituality, Unconditional Love

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

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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!

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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’

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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!’

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In Medicine…East vs. West


As ‘The Little One’ continues to show signs of regaining his strength, we decided to take a detour and visit Dr. Mo this past Saturday.  Who is Dr. Mo you might ask…well Dr. Mo specializes in eastern medicine, specifically acupuncture.   We visited Dr. Mo earlier this year for treatments of sciatica and after four treatments we were pleasantly surprised at the relief ‘The Little One’ received from the acupuncture.   ‘Why not consult with Dr. MO’, we both asked each other this past week. 

While we will not know for a least another month what effect the radiation and chemotherapy has had on the tumor; we know very well that the chemo and radiation has ravished his body, zapped his strength and pretty much turned his life upside down.  Traditional medicine, while proper seems to have a wait and see attitude during this ‘down time’ before the next PET scan.

This attitude was confirmed during my phone consultations with the oncologist and primary care doctor this past week.  The nurse for the oncologist told me over the phone that ‘The doctor normally does not call patients back’…my response to that was simply…’That is odd, don’t you think?’   The primary care doctor referred me back to the oncologist…(they share the same office!).   My response to the primary care doctor was just a tad more direct…”In the patients best interest, one of you needs to be taking the lead in the decision-making.’

That comment rang a bell with me.  The ones who need to take the lead in the decision making are the patient and the caregiver.  While we are all striving for excellency, when it comes right down to it, we are the captions of our own ship.  Authority while respected, is not all-knowing.  There is a reason that medicine is a science.  There are no two bodies alike!

We both know what we are facing with this disease, sometimes you just have to think outside the box.

What do we expect to gain from Dr. MO?  Alternatives, options, hope…just as we expected to gain from the traditional forms of medicine.  Yet not to pursue all options available to us, does not give life a chance.   We both saw the results of the acupuncture in March and April of this past year…why not give it a chance? 

In life…there are plenty alternatives, there are plenty of options, and there is plenty of hope…we just have to engage these options ourselves….rather than waiting for that call to be returned.

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Meet Me In St Louie, Louie…


The ‘Little One’ heads to his final radiation treatment this morning. We are both thankful this chapter has come to an end. Yet in retrospect, there has been some bonding with the other patients who are scheduled at or around the same time.

Whether it is a gentle hello, a wave of the hand or just a simple jester, there is a bond with these patients that in undeniable. It has been an honer to be in their presence.

We will be motoring up the road today to St Louis. We are looking forward to the trip as a change of scenery will do the Little One some good!

Meet me in St Louie, St. Louie!

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It’s all about you!


We are on our way to the final chemotherapy treatment; it is a good thing!

All told, ‘The Little One’ has improved quite a bit since my arrival in Florida two weeks ago. I am in no means taking credit for his improvement, yet I do have to wonder “how does anyone who is alone cope with cancer?”

Sure, there are a tremendous amount of resources out there to help; yet that is not the point. In time of a health crisis, that is when family is needed the most!

This makes me wonder about family dynamics, rather what constitutes a family?

I am proud of my family; my four diverse and beautiful sisters, my brother and favorite sister-in-law; all my nieces an nephews who affectionately call me their F.U. (favorite uncle); my little one who is so brave and courageous; our friends who have constantly checked in with us…

Thank you for being s part of our family… Thanks for not leaving us alone!

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Whoo Hooo 4lbs!


Great news today as ‘The Little One’ checked in at the chemotherapy office today with four more pounds!

The staff at the doctors office was pleased with the progress. If tonights meal of meatloaf, green beans, fried apples and of course, ice cream with warm butterscotch (of which he devoured it all) is any indication of the direction we are headed; Then Full Speed Ahead!

Always remember… Take Time to Laugh… It’s The Music of the Soul!

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A Trip to the Hospital


The phone rang and there was a trembling voice on the other end…”They are admitting me to the hospital”  The Little One said.  It was not difficult to hear the fear and anxiety in his voice; the psychological aspects of going through chemo and radiation are often overshadowed while in the mist of the treatments.   Even more unbelievable…his doctor wheeled him to the hospital emergency room herself! 

While no one really relishes a trip to the hospital, this was the best way for ‘The Little One’ to help regain his strength and take a break from the cancer treatments.  The chemotherapy and radiation has zapped his strength;  low white blood cell count and low potassium levels seem to be the culprit in this sordid mess.     All fixable items on the health dept chart when recognized early and treated properly.   We are thankful for the chemo-therapist for his swift action and recognizing that was something amiss.

Try as we might, we just can no longer do these treatments apart.  Independent as he is, these treatments are just not something that you can do on your own.   The issues are enormous;   house and doctors in Florida, job and family in St. Louis.  Yet one thing is certain…home is always where you are when you are with the one you love.

Last Saturday I met with a wonderful geriatric social worker in St. Louis by the name of Jeanette.  The hour I spent with Jeanette was worth its weight in gold.  One of the great lessons that I was reminded of during my visit last week with Jeanette is the need to network and explore expertise other than your own.  (Now is not the time to be a legend  in your own mind.)  There are more options available than meets the eye, it’s just getting to the right resources in time to make the proper decisions.  I am thankful for her knowledge and thankful to Sherrill Wayland from Metro SAGE St. Louis for the great referral.

As I have previoiusly mentioned, being a caregiver is a privileged…Yet in order to be a good caregiver you have to sometimes detach your emotions and explore knowledge and resources outside your area of expertise.  There is no need for the caregiver to go solo!  My visit with Jeannette reminded me that in order to think outside the box, I have to get out of my own world.

As we move into the final stages of the chemotherapy and radiation treatments, we are doing this together…side by side, one by one.  Now that I am in Florida, one decision is firm…’The Little One’ will no longer be ‘physically’ alone to go through these daunting treatments.  We look ahead with hope, with anticipation and most of all…with all your love, prayers and support!

 

 

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