Category Archives: oncology

‘In Sickness and In Health’


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Greetings Friends,

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This past Sunday, the South Florida Sun-Sentinel published a story on Richard and me entitledIn Sickness & In Health’…(Click here for a link to the interactive story and video.) When we were approached to do this story, Richard and I thought long and hard about the thought of having two people follow us during some of our most intimate times in our life.  Not that our story is any different from those countless number of caregivers out there, however, we  both felt that telling the story from the prospective of a LGBT couple would demonstrate that its OK to love who you love.

Now, almost three full days since the article has been published, I am overwhelmed by the support that this article has generated and felt compelled to thank Diane Lade and Carline Jean from the Sun-Sentinel for telling our story is such a beautiful way.

Since ‘TLO’ made his life transition on March 9th, I have spent quite a bit of time listening to a CD entitled “Love Changes Everything” recorded and produced while I as a member of The Gateway Men’s Chorus in 2010.  At ‘TLO’  memorial service last week in Fort Lauderdale, I used three songs in this CD as part of his celebration of life.  Things That Never Die; Rise Above The Walls; and Somewhere Over The Rainbow.  If time would have permitted, I would have also played, In Whatever Time We Have, Who Will Love Me As I Am and Webber Love Trio.  I plan to incorporate these songs into TLO’s Celebration of Life service in St. Louis on Sunday April 27.

In one of my last blog post before TLO made is life transition, ‘Approaching The Final Destination’, I wrote, “Cancer is not the winner here, Love is the winner!”  Now after reading all the comments on-line and emails that I have received, along with the many phone calls that  have come in,  I now know why I started  to listening again to the CD  from the Gateway Men’s Chorus, because “Love Change Everything!” 

Click here to read our story and see our video:

In Sickness and in Health: A Couple’s Final Journey

Photos and video by Carline Jean

Story by Diane C. Lade

cjmrjoYou see…We might of had Cancer, but Cancer never ever had us…we had love!

 

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Happy Thanks-Caregiving


You must do things you think you cannot do.  Eleanor Roosevelt

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 We are Thankful for those who are Caregivers today:

We are Thankful for those who will be Caregivers tomorrow:

We are especially Thankful for those Caregivers whose journey has past. 

We share  in our Caregiving Journey in a special way, knowing that while our Caregiving roads might be different, our paths are filled with comfort and joy from the support we receive from each other!  

Thank You for being a part of our Caregiving Journey.  

From our Caregiving Journey to yoursHappy Thanks-Caregiving         

The Bow Tie Guys!

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

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‘Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

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On Being An Advocate


Knowledge is knowing what we do not know:  Ralph Waldo Emerson

Knowledge

As we move into the second week of TLO’s palliative radiation treatments, we experienced a few challenges over this past weekend that needed the attention of the Hospice Nurse.   I knew it was just a matter of time before we would enlist their services, it is comforting to know that our ‘friends’ at Hospice of Broward County are just a phone call away.

One of the most important components to being a Caregiver is to know your strengths, and to know your weaknesses. While I know I have a Ph.D. in TLO, I am also aware of my (many) limitations.  I’m not a pharmacist, doctor or nurse. Remember…Knowledge is knowing what we do not know.  My strength in Caregiving is  advocacy; Advocacy is without a doubt the most, if not the most important role of a Caregiver.  My Ph.D. in TLO comes in handy when it is time to advocate.  We will get to that in just a few!

When a new problem arises, there  is no time to guess, wonder out loud, talk about it…it’s time to act.  Rather…it is time to advocate!  TLO had started toID-10053858 show signs of Edema is his feet and ankles on Thursday. Aware that he has congestive heart failure to go along with the myriad of his health calamities the extreme Edema was something new to his health care puzzle. While I ‘knew’ an additional dose of furosimde would probably be the solution, (as well as elevating his legs), I did not know if adding the additional dose  would be appropriate with the new MEDs that have been prescribed over the last week.  A quick call by the Hospice nurse during her home visit on Thursday ensured a quick call to the Doctor to secure the increase the furosimde dosage.    Done! 

As we moved into Sunday, water continued to build on his feet and ankles, “the Edema was getting worse” I thought. “I am going to call Hospice,” I said to TLO. “What are they going to do for me” TLO said. “I’m pretty sure they are going to be able to do more than I can do for you at the moment because what is happening right now is just a tad out of my comfort zone.” I said. When the phone rang at Hospice,  I was greeted by a warm voice who listened as we talked through a couple of options that might help in this situation.  My Ph.D. in TLO comes in handy when debating with him what is the right thing to do.

While there was really no resolution on Sunday to his Edema, things started to change on Monday with a few calls and a visit from the Hospice Medical Director.  It was perfect timing for the Doctor to make her home visit as we were able to address first hand not only the Edema, but the entire care plan and philosophy of TLO’s care as we move forward in our Hospice Journey.   Having the Doctor in our home for over two hours not only paid medical dividends for TLO, her presence demonstrated to both of us the special care that Hospice provides its patients.  The doubter of Hospice,  TLO became the believer after her visit.  “How did you get her to come to the house,” TLO asked…’She came because your a special patient,” I retorted!

ID-10055013What amazed me about her visit was not only the care she provided to TLO, but the time that she took to educate me on his MEDs; the Doctor was there for both of us! While going through his MEDs, the Doctor provided me with a ‘cheat sheet’, written out in layman terms so that I would have a better grasp of the new  pain MEDs.   Remember the thing about knowledge!  Now I am in a better position to advocate because I’ve gained more knowledge about the process with his new MEDs.

Advocacy comes in many shapes styles and forms;  I’m not the type of advocate who is in your face, raises his voice, or creates a scene.  However, I will engage professionals, ask questions until I am blue in the face to assure TLO has what he needs.  Often times, we as Caregivers forget that we do have a Ph.D. in the one we care for.  Our Ph.D. is just as important as any professional who is on the care-team because we spend the most time with our Caree and know them the best.  That’s why the role of advocacy is essential in Caregiving.  Physicians can write prescriptions, nurses can administer treatments, CNA’s can provide care, yet the key component to all these professional services is the personal knowledge or rather, the Ph.D. Caregiver’s have on their  Caree.  All these care components have to be in unison for optimal success.

Caregivers’s Ph.D. usually come just like those professional Ph.D.’s…burning the midnight oil, sleepless nights, worry, stress, etc.  Caregivers advocacy is like taking an oral test in school, you have to be prepared for the unexpected, you must show up and give it your best try!  Knowing what I don’t know has helped me be a better advocate;  having a Ph.D. in TLO is priceless!

Caregivers, I bet you have a Ph.D, too!

You see…we might have Cancer, but Cancer does not have us!

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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! 

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

What’s On Your Refrigerator?


The Giving Of Love Is An Education In Itself…  Eleanor Roosevelt 

 I was thinking about that television commercial which constantly asks ‘What’s In Your Wallet’ and how catchy their marketing theme is.  I instantly think of Capital One when I hear that phrase…’What’s In Your Wallet’.  We keep most of our important identification and credit cards in our wallet; I think carrying important identification and credit cards in a wallet a common trait for everyone.

As we move into the second phase of palliative radiation treatments, and while engaging our new friends with Hospice Of Broward County, it occurred to me that we are going to have a number of ‘new friends’ visiting us in our home.  It is going to be important for these new friends to have quick access to our important documents which include TLO’s current meds and medication history, doctor information, health care directives, DNR, Durable Power of Attorney.  That is why I put (some of) these  important documents on our refrigerator in our File For Life folder for easy access!  We even spiced our file up with a little New Orléans!

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 While I am a big proponent of electronic media and databases, we also have to be mindful that sometimes networks and computers crash.  When you need your most important documents at a moments notice, the last thing you need is a failed hard drive or jump drive to add to the stress.  In my opinion, there is nothing that replaces the hard copy of your important documents.

The key to having a hard copy of these documents is to know where they are at a moments notice.  When you are in the midst of an emergency, the last thing that you want to have to think about is..‘where are those documents!  Additionally, you want emergency personnel to have quick access to these documents.   In our File For Life, I have a spreadsheet of TLO’s current meds, Doctor’s / Hospice contact information, Diagnosis, DNR and my contact information.  I also indicate in our File For Life, where the larger documents are located, I.e. Power of Attorney, Health Care Proxy, Living Will.

So…’What’s On Your Refrigerator?’

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

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The Call For Hospice


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

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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

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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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Never Alone


That Which Does Not Kill Us, Makes Us Stronger.                         Fredrich Nietzche

As we move into the second week with the news of the cancer spreading to TLO’s spine, we are grateful for all the wonderful words of encouragement, the expression of love, along with the care and concern shown to us.  Yes, the news hit us hard last week, yet each day we have gotten stronger because of so many of you who have reached out to us. We are grateful for your attention; it is important for us to know that we are Never Alone.

This past Thursday we had our initial consultation with the radiation oncologist; our next scheduled visit with the radiation oncologist is on Tuesday of this coming week.  With three tumors on his spine located in the Document1Cervical, Thoracic, and Lumbar region, the radiation oncologist is going to be aggressive with his treatment plan, yet cautious because of the location of the tumors.  The visit on Tuesday will determine if the radiation oncologist will be able to ‘shoot’ one or two tumors at the same time.  We are anticipating 14 to 21 days of radiation.

As the week has moved on, we have both adjusted to the difficult news, and what lies ahead of us.  A good friend of mine asked me this past week, “what is the time frame that the Doctor gave you?”  Knowing what he insinuated, I reminded him that two years ago the oncologist told me that ‘TLO’ had “three, maybe four months to live.”  Now two years past that original diagnosis, we have learned to take predictions in stride and deal solely with reality.  We have cancer, we know it is serious, each day is a gift.  We have run with this philosophy for the past two years, there is no reason to change it now.

The reality of the diagnosis has allowed us to have some very meaningful conversations between the two of us.  One of the conversations we had this week centered on the need to have a consultation with Hospice.  We look at Hospice in a positive sense, not a death sentence.  Hospice is not a place where you go to die, but rather a wonderful program that celebrates life. 1185347_10200667183346858_491171639_nHospice does not shorten lives, Hospice helps people live as pain-free as possible.  What Hospice does help accomplish is the facilitation of the natural course of life.  Hospice is inclusive of the entire family, bringing care and comfort to all involved.  The sooner Hospice in engaging in the process, the better the experience will be for everyone.

As Caregivers, we often get caught up in the mindset that we can do this alone.  I think that is even more so for LGBT couples who fear discrimination and bigotry.  It is one thing to experience this feeling in a public setting, unbearable to have someone bring those feelings into your own home.  We both have previous experience of waiting too long to call for assistance.  As we move forward with his palliative radiation treatments, it only makes sense to have this added benefit with us.

As the week has moved on, TLO has regained some strength and continues to try to be as independent as possible.  When I look at him, I am frustrated because I cannot see what I know is inside of him.  We had a trip to the grocery store, he has been out to lunch and to dinner, and he is chatting on the phone with friends.  What is so different about today from last week? TheID-10079215 only difference is that we now know what has caused his pain, now we have to respond to it.  In a sense, the diagnosis is a blessing because now we know what we are up against and can have a plan of attack.  We move forward with the same vigor, hope, and reality that we did two years ago.

We learned two years ago from the original diagnosis that we cannot predict the future. We have also learned this past week that are Never Alone!

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

027Mardi Gras 2013 

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Cancer: That Unwelcomed Guest Has Returned


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Love Is Composed Of A Single Soul Inhabiting Two Bodies:  Aristotle 

Saturday’s revelation that ‘The Little Ones’ cancer has metastases to his spine was devastating.  Two years past his radiation and chemotherapy treatment for esophageal cancer, we are back facing this vicious disease.  ‘It’s’ been knocking on the door the last few weeks; it is difficult to acknowledge this unwelcome guest has returned with new vigor and new strength.

I am not sure I can accurately describe our emotions at this time.

Concerned for the past few weeks that the tumor was active again, Friday’s MRI and CT scan proved our suspicions true.  While the news is unwelcome, we are thankful that at least we know the source the pain and discomfort which will allow us to act accordingly.  Palliative radiation is a new term that I learned on Saturday; TLO will immediately start palliative radiation treatments to help relieve the serve pain that suddenly came upon him Thursday night.

Scary does not do his pain justice on Thursday night; nor how we feel right now.

Imploring the attending physicians at the hospital to consult with TLO’s primary care physician helped avoid an unnecessary cardiac catheterization procedure which would have been dangerous and certainly unnecessary.  The cardiologist was sure his issues were cardiac, ‘he has the classic symptoms and history of heart disease,” said the cardiologist.  ‘That may be true, but before we make any decisions on doing a cardiac catheterization, it is important that we first find out what is going on with the tumor; we are not doing any invasive procedures until we have the MRI and CT scan’, I suggested. The cardiologist was working out of his area of medicine and we respect that.  

The harsh reality of the news creates an immediate void to an unpredicted 1385583_607513719290066_905165614_n (1)future.  The last twenty-four hours back at the house has found both of us to be just a bit sad and depressed.  We both have to watch those emotions so that they do not permeate our decision-making process. Depression often plays such a strong role in how disease functions in the body.  While we are both cognizant of that, it comes down to mind over matter.  As I’ve said before…”It just ain’t easy!”

A whole set of new and intense emotions intrude on us right now.  Worry, detachment, mortality, anger, fear of abandonment and having to live life alone. These gut wrenching emotions lurk in our minds when faced with a life-and-relationship-altering illness.  Often times, you have to give up things that you lovein order to care for the one you love.

Over the past 24 hours, we have had the chance to talk openly about what lies ahead of us.  As we begin to accept the raw news that was delivered yesterday, TLO is insistent that we continue to advocate for those who have no one to advocate for them.  “What would have happened to me if I had gone ahead with the cardiac producer; what would have happened to me if I had no one to advocate for me,” TLO exclaimed!  We intend to be as open as possible with everyone as we move forward with treatments.

We will push ahead because life’s journeys are not often driven on smooth roads, but we can always hope for a gentle wind at our back. This gentle wind is always fortified by our love, our faith, our friends and our trust.

Thank You for being a part of this journey with us!

You see…we might have cancer, but cancer does not have us! 

TLOCJM

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Filed under advocacy, caregiver, Esophagus Cancer, LGBT Caregiving, oncology

A Caregivers Journey Through Music


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On Thursday August 8th at 5:00 pm (est) we welcome Oncologist, Dr. Rick Boulay to ‘Be A Healthy Caregiver’ on Blog Talk Radio!  To listen to our show live, simply click here! 

Rick Boulay, MD is a Board Certified Gynecologic Oncologist and serves as Division Director of Gynecologic Oncology at Lehigh Valley Health Network in Allentown, PA. While Dr. Boulay is highly recognized in his field, but there is much more to his story! 

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At the young age of 4, Rick was faced with the tragic news of his Grandmama being diagnosed with Colon Cancer.  As an adult, Rick wife was diagnosed with Leukemia. Through his Caregiving Journey, Rick learned that peace and hoped dwells within all of us. But the road is not always smooth!

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On Thursday’s show, we’ll explore not only Dr. Boulay’s work, we’ll listen to tracks from one of his three CD’s, Love A Caregivers’ Journey, and talk about the Catherine Boulay Foundation in honor of his Grandmama and all those touched by cancer.

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While listening to Rick’s beautiful music, we’ll be able to connect our Caregiving journey through song.  And without a doubt, through our conversation with Dr. Boulay, we will all learn how to ‘Be A Healthy Caregiver!’    

We will be taking your calls during our second segment at 646.478.3716

Visit Dr. Boulay at Journey Through Cancer by simply clicking here! 

Visit the Catherine Boulay Foundation by simply clicking here! 

Cannot listen to our show live…NO Worries!  All of our episodes of ‘Be A Healthy Caregiver are archived for your listening convenience by clicking here! 

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82: Who Would Have Known?


Love is composed of a single soul inhabiting two bodies.  Aristotle 

026Today, ‘The Little One’ turns 82! It is a feat to recognize considering we are now 16 months past the oncologist‘s original  estimation of 3-4 months to live after the completion of his radiation and chemotherapy treatments in October of 2011.      We all know that Cancer is an insidious disease, unpredictable and unkind to many.  While we feel blessed to have the extended time together,  we are cognizant of all  cancer victims and their families today.

We learned from our oncologist prediction in October of 2111 that there is really no one who can tell us how this ordeal was going to play out.  There are no timetables in life:  what is here today, is gone tomorrow.  Knowing full well that I am not the one with cancer, I had to learn my supporting role as the caregiver as time played out.  Remembering ‘TLO’ determination and commitment to ‘fight this as best I can’ still rings in my ears from October 2011.  His determination is still prevalent today!

I have never liked phrase ‘terminal illness‘ …some people view life as a terminal illness.  Yikes, how sad that is!   TheWorry TLO and I have both buried our previous partners, in one sense that is what drew us together.  Our previous Caregiving experiences give us the foresight to know that…we really don’t know what is going to happen.  The best we can do is be present in the day.  That is why is it our hope that lets us withstand problems, and it is our dreams that lets us find solutions.  

We celebrate birthdays as milestones, and today is a special milestone for ‘TLO’.  Happy Birthday to my best friend, pal and partner.   May your hills always have a gentle wind at your back.

We Might Have Cancer…

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But Cancer Does Not Have US!

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Filed under Advocate, Be A Healthy Caregiver, Caregiving, Gay Seniors, Intergenerational, oncology