Tag Archives: Caregiving

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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Whew! What a week…and then some!


The ride to St. Louis  was just a tad more difficult than we expected, yet we made it back safe and sound even if we had to spend one additional night on the road.  As we motored in from Illinois, it is was a refreshing sight to see the Gateway Arch ahead.

As we enter our second week back in St. Louis, The Little One has struggled to regain his strength.  The radiation and chemotherapy has literally taken the wind out of his sails.   Some of the simplest things for him to do often takes so much effort.   We do hope that his strength will come back so that he can enjoy some of the simple things in life like listening to his favorite operas

My routine has changed quite a bit, too.  While it is an honor to be a caregiver, the caregiver has to be mindful of their energy level as well.  There is quite a bit of responsibility that goes into caregiving,  none as important as caring for yourself.   I am most fortunate to have a wonderful job and an understanding organization to work for; I am thankful that my Real Estate clients are patient as well.   We know that we are not in this alone.

At least for now, it is clear that The Little One will not be able to stay by himself.  As he regains his strength we can revisit this issue,  but for now it is clear that he will need  supervision as we move forward with this insidious disease.  This is difficult for him because he is so fearlessly independent, yet we all have make adjustments to the hand that was dealt.

We have another three weeks to wait before we go for the follow-up PET scan.   The PET scan will determine the next course of action; we do know that there will be NO more radiation! By all accounts we acknowledge that the tumor has shrunk; yet the physical and mental anguish of these treatments pale in comparison to what an ordeal this has been for ‘The Little One.’

Martin Luther King once said: “Take the first step in faith. You don’t have to see the whole staircase, you just have to take the first step.”   As we move forward, our faith is made stronger by the love and care of our family and friends as we continue to battle this disease!

 

 

 

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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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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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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?

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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.

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