Tag Archives: advocacy

‘The Extreme Patient’


While ‘The Little One’ continues to show marked improvement while recovering from the trauma of chemotherapy and radiation, we move on to another calamity called sciatica. Anyone who has had back pain knows how debilitating it can be, yet to alleviate the pain we must be open to new modes of treatment.

On Wednesday we motored to InMotion Health and Wellness for a visit with Dr. Greg Neff to see if Chiropractic help was in order for his current ailment.  The ‘Extreme Patient’ as we see in this photo opportunity for his building fan club,  (yes KJ, the only thing missing is the Tiara!) decided to ride the wave and try out this new treatment.   Of course there was the debate…”This is not going to work”…’Why are we wasting our time”… etc, etc, etc.  While I try not to roll my eyes (at least noticeably  to others), we just continue on with our friendly banter because that is the way we communicate.

Communication is a funny thing; just like relationships.  It’s funny how the two go hand in hand.  Relationships are built on strong communication and trust.    Yet in communicating his apprehension to Chiropractic care, I knew that this was simply a way for him to let off some frustration.    Sometimes, you just have to let go!

As caregivers, we have to be mindful that while we are there in a supporting role, it’s not our body that  is going through the treatments.   How much can the mind and body take in such a short period of time?  I think that really depends on the person and their ability to communicate their wants, needs and desires.  And in the supporting role, the caregiver has to be mindful that what you might want for your loved one, may not be what they want; what a slippery slope!

It is through honest communication,  built on trust and love that truly reveals the essence of a relationship.  We’re glad that we have (and share) this trust and love as we continue on this journey to better health and happiness.

 

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A Night with Opera St. Louis


Wednesday night we had the pleasure of listening to a couple of performers from Opera St. Louis. With ‘The Little One’ being a big fan of Opera, I knew we were in for quite an enjoyable evening.

As we were preparing for the festivities, I heard the ‘The Little One’ say in the distance…”well, this should be interesting”. Curious, I peaked in to the bedroom to see what he was he was talking about; his dress pants!

Once I saw him holding up the pair of pants, I knew exactly his concern. With a weight loss of over 35 lbs, we both knew these dress pants were not going to hug the hips.

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Thank goodness for suspenders!

When he put the pants on, we were both amazed at how much weight he has lost. He has easily lost four pants sizes! (I now need to do the same)

While his weight loss is good for his overall health, they way it has happen is certainly not one of those fad diets you see on TV!

The second PET scan has now been scheduled for December 12 in Fort Lauderdale; we will be heading south in just a little more than a week. We are anxious to see where we stand with the tumor and the only way for that to happen is to conduct the follow-up PET scan.

While the PET scan might give us the physical facts of the tumor; we will not be held back by the results. We are moving ahead with our heads held high.

You see, we might have cancer… But cancer does not have us! We are putting money away for a trip to Paris in Spring of 2012. I have never been, ‘The Little One’ has been three times!

Live each day like it is your last; care for those who are always by your side!

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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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Honest Dialogue is the BEST Medicine


Tonight we had ‘The Talk’…The ‘What If’s…The ‘unmentionable’…It happen so matter-of-factually that by the time the conversation was over, there was no pain, no agony, no tears. It’s simply called, planning…planning for the day when there will be no more days. How does one really do that…By having honest dialogue so that everyone is on the same page so that no stone is left unturned.

When The Little One mentioned the word “Hospice” this evening, it opened the door up for one of the most beautiful and meaningful conversations that two people could ever have on such a sensitive subject. The funny thing about this word “Hospice” is that we have both experienced hospice in the past as both of our deceased partners went through this wonderful program. Yet for some reason, we have not been able to talk openly about this topic between ourselves until today.

We are both advocates of Hospice yet for very different, yet similar reasons. While I tend to be on the spiritual side (I can’t completely let go of my theological background) ‘The Little One’ claims to an agnostic Jew. I always find that funny because he is one of the most spiritual and ground persons that I have ever met. Often misunderstood for his gruff demeanor and direct comments, ‘The Little One’ is rooted in clear thought and perspective. You may not like what he has to say, yet he leaves no dust uncovered. You know where you stand, win or lose. It is really the best way to communicate.

For me, Hospice is a way to celebrate all stages of life. Hospice is not only for the patient, it is also for the entire family of the patient. ‘The Little One’ would say the same thing, yet he would omit the spiritual side of the experience. Yet the spiritual side of Hospice is undeniable because so many lives are transformed by the experience. During my CPE (Clinical Pastoral Education) internship several years ago, I was honored to have the chance to work for a summer in Hospice. I truly saw some remarkable things during my Hospice internship. High profile Doctor’s humbled; broken families reunited; husband’s, wife’s, children, partners letting go. It is as raw as a human experience one can have attending to one’s happy transition. Just as no one should be born into life alone; everyone should be afforded a beautiful sunset to their lives as well. Hospice is one of the tools that allows that to happen.

While we have all the legal paperwork in place, having the conversation out in the open allowed us to speak boldly on the ‘what if’s’…’how are we going to handle this or that’…and merely…;just what are we going to do?’ With the second PET scan scheduled for the first week in December, we will have a clear idea what effects of the radiation and chemotherapy had on the insidious tumor. Will our plans become clear at that point? Maybe so, maybe not!

You see, what ever the oncologist tells us in December, we are going to live each day to the fullest. We are going to do what we can do each day and simply move on. We know some days are going to be better than others, yet why wait around for the Grim Reaper? Let the Grim Reaper chase after us. I’ve used this line in a previous post….”It is a known fact that 100% of the people born are going to die.” So as we continue on with our Monty Python Theme of ‘We’re Not Dead Yet” we’ve decided not to ACT the part, but rather embrace it with a life as full and rich as we can have under the circumstances.

Honest Dialogue often brings out the best (and sometimes) worst in people. However without honest dialogue, what then is communication? While there is not a need for Hospice today, we both know where we stand, we both know what is important to us and we both know that when and if the time comes for this wonderful program, we’ll embrace it, deal with it and make it the best possible experience for all of our family and friends who care to share in the experience with us.

While the effects of Cancer are enormous on everyone, we can’t allow the disease to drive the bus. While ‘The Little One’ and I might share different opinions on life after death; one thing that we do know is that while we are on this earth, we are going to enjoy every second, minute, hour, day, month, year we have left. Life is intended to be lived; we move on with faith, happiness and love. While we can’t avoid pain, we can choose to overcome it. That is simply how Herman and Richard (the first) would want that for us, and for all of you as well!

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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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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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The Future is Now


“No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Your time is limited, so don’t waste it living someone Else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” – Steve Jobs

As I pondered this quote from the late Steve Jobs, I took quite a bit of solace and inspiration from it.  As a caregiver, you freely give your life to someone else while being mindful of your own individuality and needs.    As The Little One heads into his final four days of radiation treatments, our lives are changing before our eyes.   We can’t predict the future, we can only deal with the present.   We intend to live our lives to the fullest and enjoy each and every day we have.

The key here is not to wait until there is a serious illness to have this revelation.  We have been fortunate to have followed our heart and intuition since we became friends.   While our life is different because of the  illness, the illness will not control our lives.

While completing my internship in Hospice a few years ago, I was often observed families who were trying to resolve life long issues at the ’11th’ hour.  We all know that is an impossible task, yet understandable under the circumstances.   We can’t fix the past, yet we should not live in it either.    We can live today and search for tomorrow; that is what life and hope is all about.   Or as Steve Job’s put it…”Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

 

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“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?

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