Monthly Archives: October 2011

October 31, 2011 · 10:40 pm

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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Tagged as advocacy, advocate, Bow Tie Guy, Caregiver, Caregiving, Chemotherapy, committment, Health, home health care, Humor, Life, love, Medicine, oncology, Practitioners, radiation

October 25, 2011 · 10:45 pm

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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Tagged as Bernard Richard Schiffer, Bow Tie Guy, Caregiving, committment, esophagus cancer, home health care, Humor, LGBT Caregiving, Life, love

October 13, 2011 · 8:07 am

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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October 12, 2011 · 9:20 am

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!

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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Tagged as advocacy, Bernard Richard Schiffer, Caregiving, esophagus cancer, LGBT Caregiving, LGBT Seniors, TheBowTieGuy, TLO

October 5, 2011 · 8:40 pm

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!

“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?