Tag Archives: Medicine

Hello and Please, Come In!


Before I refuse to take your questions, I have an opening statement…Ronald Reagan

20131023-101238.jpgAs we walked into the office at the radiation oncologist this morning TLO proclaimed to the staff ‘ I’m here, let the games begin!’ Of course his ‘proclamation’ was greeted with a big smile by the staff as he sat down in the waiting room waiting for his time in the radiation ‘whirlybird!’  We are trying to find as much humor as possible as we can during this trying time. 

The current plan of radiation treatment is focused on the tumor which is located in the cervical part of the spine. This is the area where TLO is experiencing the most amount of pain and discomfort. Because of its location, this is the tumor that is of the greatest concern.    The last two nights at home have been difficult for him.  The pain across his back makes it difficult for him to lay down comfortably in bed, sometimes the recliner is the most comfortable spot for him.  The most important part of this process is to alleviate as much of his pain  as possible.  So, where ever he feels is the most comfortable spot for him, I’m all for it!

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Our New Curtains 

After yesterday’s treatment, we went for an ice coffee and found ourselves in a department store looking at curtains of all things.  I can’t remember the last time we were even in a department store!  TLO wanted new curtains for the dining room, ‘why not’ I said!   In between his naps yesterday, I hung the curtains which lead to a conversation this morning prior to our departure for today’s treatment.  ‘Thanks for agreeing on the curtains, don’t you think they are beautiful,’ TLO said.  ‘Of course they are because you picked them out,’ I said with a smile. ‘It’s important to have things that you want, isn’t,’ he said? ‘Of course so,’ I replied. ‘If there is anything you want, I will do my best to get it for you!’

Nothinggoesaway As we have progressed through the first few days of the radiation treatment, we know that we are just starting to scratch the surface to our emotions, our fears, and our determination.  Today’s session has taken quite a bit out of TLO as evident by how terrible he is feeling this afternoon.  We know that Cancer is an unwelcome guest in our home, but this unwelcome guest has brought with it the ability for us to draw closer, to dig deeper into the surface of our emotions and fears, while strengthening  our determination.    I guess there is something to learn from an unwelcome guest!

You see…We Might Have Cancer, But Cancer Does Not Have Us! 

 Related articles

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Filed under Cancer, cancer treatments, Caregiving, Hospice, oncology, TLO

The Call For Hospice


Love And Compassion are necessities, not luxuries. Without them humanity cannot survive.   Dalai Lama

Hospice-1

As we move into the second phase of palliative radiation treatment for TLO, it was important for both of us to bring in our ‘friends’ from Hospice of Broward County to help us in this journey.  The Hospice team arrived promptly at our home on Friday, thoroughly explained the process to both of us, it was peaceful as  we signed on the dotted line.

I used the word ‘friends at Hospice’ because that is what they are, they’re our friends.  We welcome friends into our home and we cherish the time that our friends come and visit with us. We look at these new friends and thank them for being a part of this journey with us.

We are also cognizant and want to recognize our ‘old’ friends too.  Sometimes when the word Hospice is used, there is that utter silence or that blank stare …that sense of ‘what do I say next’ …know that we understand that for some, the hospice conversation might be difficult.  That’s OK too! Because…

Sometimes

babies

Just being there is all that is needed! 

 windingroad We don’t know what the road ahead looks like for us. Sure, there will be a few swift curves, some winding roads and a missed turn or two.  Yet it will be all of our friends who will help celebrate this journey with us.  We’re realistic, but encouraged: We’re scared, but courageous.  We know we cannot do this alone. We’re thankful for all our friends and we are respectful of your comfort zone too.  Your thoughts, prayers, phone calls, e-mails, words or encouragement are most appreciated.  Because you have remember…

 We Might Have Cancer, But Cancer Does Not Have Us! 

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Filed under Cancer, cancer treatments, Hospice, LGBT Seniors, oncology

LGBT Caregiving Blog Series


 

I was privileged to have been had one of my blog post published recently  in the  American Society of Aging; LGBTcaregiving section. ASA’s Aging Issues Network (LAIN) is a great source for LGBT Caregiving and Caregivers.

‘Two Relationships in One’  

To be entrusted with the care of another human being is one of the greatest honors that can be bestowed on you.  It takes on meaning that is beyond approach.  New parents have nine months to prepare for the responsibility. Doctors and nurses undergo years of rigorous training for the work that they do.  But caregivers can find themselves thrust suddenly into roles that they do not choose when called to care for a partner, spouse or loved one after a diagnosis or an accident.

At a moment’s notice you become a caregiver, without any warning or time to think things through. You feel like you have no idea of what you are supposed to do, so you do your best, as you follow your instincts and common sense. You embrace the new reality. You simply care for the one you love.

When you become a caregiver for your life partner, a new and uncharted realm opens up.  Two distinct relationships must now be blended into one. The familiar partner from the past remains and is always present.  But now there is someone different on the scene – someone with a significant illness.

Suddenly, two people sharing a life together will need to face challenges that cannot be left unattended.  A whole set of new and hard-core emotions are likely to intrude on the relationship. Worry, detachment, mortality, anger, fear of abandonment and having to live life alone, to name just a few, begin to intertwine with the idiosyncrasies of your personal dynamics. They can lurk in a caregiver’s mind when faced with a life-and-relationship-altering illness in your partner.

Care giving is an intense experience that asks you to surrender yourself for the needs of someone else.   Often times you have to give up the things you love in order to care for the one you love.  Even though it may feel like a hardship, you make the choice because you know that it is what love and commitment is all about.  Yet it is not that simple, because care giving can be an emotional, physical, and interpersonal roller coaster that is both tremendously rewarding and frustrating. These emotions can surely test even the best communication and trust in a relationship.  The common denominator in the blending of these two relationships is communication.

Communication is a funny thing; just like relationships.  It is funny how the two go hand in hand.  Successful relationships are built on strong communication and trust.    It is through honest communication that the true essence of a partnership is revealed.  This does not change when you add the role of caregiver to the mix.  Communication has to be the focal point for conveying the wants and needs of the one who is ill, and this must be accomplished without losing the identity of either the partnership or the caregiver.  The term “delicate balance” takes on a whole new meaning.

Frequently reviewing and maintaining clarity in your roles becomes crucial so that your judgment and decision-making skills are based on sound facts instead of raw emotions. How much can the mind and body take when faced with so many changes in such a short period?  I think that really depends on the couple’s ability to safely, clearly, and honestly communicate their wants, needs, and desires as indicated by the partner’s health needs first and the personal relationship second.

While I have no doubt that caring for my partner (who has been diagnosed with esophageal cancer) has strengthened our relationship, it has changed our relationship at times, too.  I have seen someone who was firmly independent become dependent in certain areas of life that have been difficult for him to accept.   Stepping outside one’s comfort zone and asking for assistance with mundane everyday chores adds stress to both parties.  That is undeniable!

Caregivers often become the voice for the one who is ill. As caregivers, we have to be mindful that we are in a supporting role;   caregivers are the advocates, not the “deciders”!  In this supporting role, we must remember that what we want for our loved one may not necessarily be what the loved one wants.  What a slippery slope this becomes when the person you are caring for is your life partner!

As part of an LGBT intergenerational couple, I have, on occasion, observed discrimination in our health care system. Here again, personal political preferences may need to be deferred in favor of pragmatism because I am in the role of caregiver.  Successfully addressing and focusing solely on the needs of my partner is paramount.  There will be plenty of time to step up and do what is politically right once I have insured his proper care.

Life’s journeys are not often driven on smooth roads, but we can always hope for a gentle wind at our backs.  That gentle wind is always fortified by love, trust, and commitment.  Come to think about it, aren’t all relationships manifested in this way?

We might have cancer, but cancer does not have us!” 

Below are links to other LGBT Caregiving articles which are worth your read.  I am honored to be a small part of this wonderful group.  I encourage you to bookmark American Society on Aging, especially their LGBT Caregiving Blog Series.  (The ASA logo above will take you to the ASA website)

Finding Pride in Caring: LGBT Caregivers Answer the Call from the Community
By Holly Deni

Sharing Care an Energizing Experience
By Nancy Bereano

Transcending Business as Usual
By Paul R. Blom

Complications of Transgender Caregiving
By Julie Ellingson

 

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Filed under caregiver, Caregiving, Gay Caregiving, Gay Seniors, Inter-generational Relationships, Intergenerational, LGBT, LGBT Caregiving, LGBT Seniors, SAGE, Senior Health

Two Relationships in One


Recently I was asked to write an article on LGBT Care giving for American Society on Aging .   While the published date for article has not been determined; I was given permission to post my article on The Purple Jacket today.

This article has been a work in progress and I am quite honored to have been asked to write about something that has so much meaning for me.  For those of you who have been following my blog, and for those of you who know me personally, it is important for me to say that writing this blog has allowed me to find my voice and step out of my comfort zone.     In finding my voice, I have found an issue to champion.

While The Purple Jacket  will continue to provide updates with  our plight with esophagus cancer and our care giving experiences as life partners; moving forward, The Purple Jacket will advocate and focus on Health and Aging issues within the LGBT Senior Community.

Some might say…”We’ll just what are the issues and what makes LGBT Health and Aging issues different?”  Those are the exact questions and answers we will be pursuing  we move forward with The Purple Jacket.  Our readers will be surprised to learn how many LGBT Seniors are alone, who live in fear, who are in poor health and who are too afraid to ask for assistance.

The issues surrounding LGBT seniors and their health are to enormous to go left unattended.    As  someone who is in ‘the trenches’ as a care giver for my partner, I have a keen sense of understanding of what are the differences and why it is important to discuss these issues with the entire community.  The Purple Jacket  will explore and expand on those issues because “it is our hope that lets us withstand problems; it is our beliefs that let us find solutions.”

‘Two Relationships in One’

To be entrusted with the care of another human being is one of the greatest honors that can be bestowed on you.  It takes on meaning that is beyond approach.  New parents have nine months to prepare for the responsibility. Doctors and nurses undergo years of rigorous training for the work that they do.  But caregivers can find themselves thrust suddenly into roles that they do not choose when called to care for a partner, spouse or loved one after a diagnosis or an accident.

At a moment’s notice you become a caregiver, without any warning or time to think things through. You feel like you have no idea of what you are supposed to do, so you do your best, as you follow your instincts and common sense. You embrace the new reality. You simply care for the one you love.

When you become a caregiver for your life partner, a new and uncharted realm opens up.  Two distinct relationships must now be blended into one. The familiar partner from the past remains and is always present.  But now there is someone different on the scene – someone with a significant illness.

Suddenly, two people sharing a life together will need to face challenges that cannot be left unattended.  A whole set of new and hard-core emotions are likely to intrude on the relationship. Worry, detachment, mortality, anger, fear of abandonment and having to live life alone, to name just a few, begin to intertwine with the idiosyncrasies of your personal dynamics. They can lurk in a caregiver’s mind when faced with a life-and-relationship-altering illness in your partner.

Care giving is an intense experience that asks you to surrender yourself for the needs of someone else.   Often times you have to give up the things you love in order to care for the one you love.  Even though it may feel like a hardship, you make the choice because you know that it is what love and commitment is all about.  Yet it is not that simple, because care giving can be an emotional, physical, and interpersonal roller coaster that is both tremendously rewarding and frustrating. These emotions can surely test even the best communication and trust in a relationship.  The common denominator in the blending of these two relationships is communication.

Communication is a funny thing; just like relationships.  It is funny how the two go hand in hand.  Successful relationships are built on strong communication and trust.    It is through honest communication that the true essence of a partnership is reveled.  This does not change when you add the role of caregiver to the mix.  Communication has to be the focal point for conveying the wants and needs of the one who is ill, and this must be accomplished without losing the identity of either the partnership or the caregiver.  The term “delicate balance” takes on a whole new meaning.

Frequently reviewing and maintaining clarity in your roles becomes crucial so that your judgment and decision-making skills are based on sound facts instead of raw emotions. How much can the mind and body take when faced with so many changes in such a short period?  I think that really depends on the couple’s ability to safely, clearly, and honestly communicate their wants, needs, and desires as indicated by the partner’s health needs first and the personal relationship second.

While I have no doubt that caring for my partner (who has been diagnosed with esophageal cancer) has strengthened our relationship, it has changed our relationship at times, too.  I have seen someone who was firmly independent become dependent in certain areas of life that have been difficult for him to accept.   Stepping outside one’s comfort zone and asking for assistance with mundane everyday chores adds stress to both parties.  That is undeniable!

Caregivers often become the voice for the one who is ill. As caregivers, we have to be mindful that we are in a supporting role;   caregivers are the advocates, not the “deciders”!  In this supporting role, we must remember that what we want for our loved one may not necessarily be what the loved one wants.  What a slippery slope this becomes when the person you are caring for is your life partner!

As part of an LGBT intergenerational couple, I have, on occasion, observed discrimination in our health care system. Here again, personal political preferences may need to be deferred in favor of pragmatism because I am in the role of caregiver.  Successfully addressing and focusing solely on the needs of my partner is paramount.  There will be plenty of time to step up and do what is politically right once I have insured his proper care.

Life’s journeys are not often driven on smooth roads, but we can always hope for a gentle wind at our backs.  That gentle wind is always fortified by love, trust, and commitment.  Come to think about it, aren’t all relationships manifested in this way?

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Filed under caregiver, Caregiving, Intergenerational, LGBT

Cardiologist…Day Two…


While we know that the tumor has shrunk, we also know that the tumor still have its ‘activities’ within the body.  Like a rumbling volcano, the tumor will react to certain foods and hard swallows.  ‘The Little One’ really has to be careful on how and what he eats, or else he’ll have an ‘eruption’ filled with gastric acid and sharp pain.

The location of tumor has made it difficult for us to decide the origin of  the sharp pain, hence the need to see the cardiologist.  Pleased with the weight loss, the cardiologist went about his work in the most pleasant of ways.   The EKG showed that the heart was in good shape and that the pain that ‘The Little One’ has been experiencing is directly related to the tumor.

Of course, these are all scientific speculations and based on his years of experience as evidence from the EKG.  While there is relief in this news, that fact of the matter is that the pain still is a part of his every day life.    As we age, we all have to accept the little bumps and bruises to our health that come along in life.

Each one of us handles those little bumps and bruises in a different manner, and my suspicion is that those of us who have a healthy acceptance  of our health calamities,  tend to fare better with their reality than those who don’t.  I certainly see a healthy attitude of acceptance in “The Little One”.

Acceptance goes a long way in building a healthy attitude.  Of course, we have our bad days and ask ourselves…’why me’…that’s just a part of human nature.   The lesson that I have learned from this experience  while watching  ‘The Little One’s’ attitude  is to simply just give up control;  but boy…do I have a long way to go with that!

Just like the doctors who can’t control the outcomes of the test, we can’t control the reality of disease. We know that the tumor has shrunk, but we also know that the tumor is still causing some issues.  Yet what we can control is how we react to the pain and issues that it creates,  and that my friends,  is where the secret lies.

 

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Filed under Caregiving, Esophagus Cancer

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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Filed under Acupuncture, advocacy, Advocate, Bow Tie Guy, cancer treatments, caregiver, Caregiving, Chemotherapy, Eastern Medicine, Esophagus Cancer, Health, Humor, LGBT Couples, Live Love Laugh, Looking into the future, Love, Medical Office, My Life, oncology, Personal, radiation, SAGE, Spirituality