Tag Archives: oncology

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

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

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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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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On Borrowed Time?


 

I decided to try something different this evening with my blog post… I am using Dragon Naturally Speaking to post my blog this evening.  I have come to the realization that I am much better at speaking than I am at typing: this just might be a better way for me to communicate my thoughts, feelings and emotions as I moved forward with ‘The Purple Jacket.”  So far so good!

Jewish Halo

This past week,  The Little One had his appointment with the oncologist. What was amazing about this appointment was that I did not feel the need, nor did I have the time to go to the appointment with him.   Now the ‘Mother Hen’ in me worried all morning about the whereabouts of “The Little One” yet  I knew deep down inside me that could handle the oncologist, handle the drive down to the office and be independent.  He did not get to be 81 without some form of independence!

Just as is the primary care doctor was encouraged at his progress, so was the oncologist.  It just so happens that the oncologist and the primary care doctor share the same office space;  this convenient for sharing information between staff and doctors.  The other benefit of this location in that the chemotherapy treatments is on the site, too! This  setup has made easier, not only for “The Little One”, but for all the patients that these physicians see on a regular basis.

The oncologist continued to spread good cheer,  good health and well-being for “The Little One.”  As I mentioned in my last blog post, the oncologist had projected 3 or 4 months to live after the initial diagnosis and subsequent treatments.  While he is pleased to be proven wrong, statistically speaking, the cure rate for esophageal cancer is one of the lowest there is.  If we are going solely by the book, then 3 to 4 months is correct.

It is understandable why a diagnosis like this would be attached to such a short lifespan.  That being said,  we forged ahead mindful of the pitfalls, yet striving for the best possible results.  We never want to rule out hope!

 I guess what amazes me the most about this visit to the oncologist is not the fact that we all recognize that the little one has far exceeded anyone’s expectations; it’s why is the doctor felt like he has to end this positive visit with the words…”You know you’re on borrowed time!”

Photo Credit: Pinterest

Granted I was not there for this conversation, and I have no reason to doubt what “The Little One” has told me in regards to this conversation.  Yet, I am not sure what the purpose of comments like this does for a patient, for a caregiver or for the physician themselves?  Throughout this whole ordeal, we have taken a positive approach to dealing with the effects of cancer. We could sulked, we could  have  played the blame game, we could have gone into denial… However, what good would that have done for either one of us?  That’s just like saying…”you know we’re on borrowed time.”  

I do not claim to be a doctor, I do not claim to be a clinician, but I do believe that I understand how a positive outlook and healthy communication  can have a soothing and  healing effect on the mind, on the body, and of the spirit when dealing with critical health issues.  When you think about it,  we are all on borrowed time, yet does a cancer patient really need to be reminded of that?

Photo Credit: Pinterst

The healing power of body, mind and spirit plays such an important role in overcoming physical (and mental) illness.   To use a sports metaphor, the best defense is usually a good offense.  The best way to deal with a diagnosis of cancer is to be as realistic and honest as possible.  Our best offense was to plunge full force  When I look at this comment from the oncologist in this light, I can understand it.  Yet to presuppose a diagnosis without the addition of hope, only leads us to despair.  Reality is painful enough, more so without the effects of hope!

Sometimes Just Being There is all we need

Through this experience, I am convinced that one of the key tools in transmitting hope and reality,  is the ability to be an empathetic communicator.    Calmly… Empathy transmits hope and reality.  I don’t think that there is anymore that we can ask for when dealing with the stark reality of Cancer or any other disabling illness.

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

Photo Credit: ‘The Bow-Tie-Guy”

 

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Amazement!


Photo Credit: Pinterest

As we continue to move forward with his aftercare, there is amazement on every side of the aisle. Our last report from the primary care doctor was terrific. She, like everyone else involved in his care, is utterly amazed at the progress that ‘The Little One’ has made since this ordeal started almost a year ago. I have been reluctant to blog lately, because quite frankly, I am amazed (and quite busy) too.

When ‘The Little One’ was diagnosed with cancer in late July of 2011, we started six weeks’ worth of treatments almost immediately. The outcome looked bleak back then, and in fact the doctors gave us little hope for the future when the diagnosis came in. ‘Three maybe four months” said the oncologist back in September of 2011.

It was at that time I made the conscious decision to withhold that information from ‘The Little One’ while telling the doctor ‘let’s wait and see how he responds to treatments.’ I never shared that conversation with ‘The Little One’ until after our last appointment with his primary care doctor just a few weeks ago. (If we are doing the math, that last appointment was in June; I was told in August of 2011 that he had 3 to 4 months. We are almost to a year since the first treatments….) Of course, I consulted with the oncologist on the decision not to share this information with ‘The Little One’ , and he agreed. “Let see how the treatments go and let him live his life to the fullest!” He has exceeded all expectations, and now his doctors want to do a case study on him.

Photo Credit: Pinterest

To withhold this information is a difficult judgment call that caregivers, spouses, doctors have to make on a daily basis. I made this decision based on one simple fact. ‘The Little One’ knew that he had cancer, and he knew that it was serious; I also knew that he was going to do anything he possibly could to beat the diagnosis. Why train the mind to think something is going to happen, when we really do not know when is going to happen?

This week, ‘The Little One’ will visit his oncologist for a quarterly check-up. I am confident that the oncologist will be pleased and say again….”Bern, you look great,” which ‘The Little One will reply, “ Yes, I’ve got a new embalmer!” Laughter is the best medicine, even in its most trying times.

What is left of the tumor is dormant and for all intent and purposes, his cancer is in remission. From the first day, we have taken this day by day. What else is there to do? Every case is different. My decision to withhold this information from “The Little One” was not an easy decision to make. After revealing this decision to him, he was glad not to know… even though he did know.

Photo Credit: Pinterest

In a sad, but beautiful twist of fate, ‘The Little One’s lifelong friend Jill has recently been diagnosed with cancer. Like our first report, Jill’s first report has us all concerned. What is beautiful about this is how ‘The Little One’  is able to transfer his experience of this insidious disease to Jill… to encourage her, to console her, to simply be there for her.  This gift of encouragement is one of the best gifts that one can give to a friend.

We send out a big hug and hello to our friend Doug in STL who is going through treatments at this time.  We are thinking of you Doug!

 Remember…We might have cancer…But cancer does not have us.

Photo Credit: The Purple Jacket

As you have noticed, we have taken a break from Blogging on ‘The Purple Jacket’ for the past few weeks.  As I transition into a new job and into a new academic program at Gonzaga University, “The Purple Jacket” will be taking on a new look too.   We will continue to provide you updates on ‘The Little One’ as this blog is really dedicated to him.  Yet in future weeks, we will expand the content of the blog to discuss the effects of Caregiving on the caregiver.   What is often overlooked in Caregiving is the importance of the health of the caregiver.  Personally, I have had to take a long hard look at this issue, and have come to the conclusion  that the best way to deal with this issue is to blog about it.  In essence, there is a real purple jacket.  I just can’t fit into it any longer.   We have to explore the issue of what it means to be a healthy caregiver!

Photo Credit: Caregiving.com

I am BIG fan of Caregiving.com  The community on Caregiving.com is just tremendous and Denise Brown who is the proprietor of this wonderful website, is an expert in the field of Caregiving. You want to be sure to check out Caregiving.com and become a part of the Caregiving family too!  Follow Denise on Twitter @caregiving and on Blog Talk Radio, too!

WE will also be exploring a new communication theory entitled ‘The Theory of Empathic Communication” in an upcoming blog posts, as well as our Phone A Friend program at SunServe Social Services.  We will also be chatting about a great program at the Pride Center in Fort Lauderdale, Coffee & Conversation which takes place every Tuesday morning at 11:00 am in Wilton Manors, Florida.   I will also have some speaking engagements to announce in August and September.  Coming soon,  ‘The Bow-Tie-Guy’ on Blog Talk Radio!  

Photo Credit: The Bow-Tie-Guy

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Anticipation


That Carly Simon song in the late 70’s ‘Anticipation’ comes to mind this evening as we prepare for our 9:15 am appointment with the oncologist on Friday.   We’ve done all the rounds this week: PET Scan on Monday, Cardiologist on Tuesday, Primary Care Physician on Wednesday we have been on the go constantly since we left St. Louis last Friday.  Today, we rested!   Yet the appointment with the oncologist is ‘the big one’. ..’Anticipation…it’s making me wait!’

While all the doctors we’ve seen this week have given us high marks, the Primary Care Physician was steadfast in her recommendation.   “Focus on your cancer treatments, everything else looks great.”

The human body sure is a funny place to live.  One of the positive outcomes of this experience is that ‘The Little One’ is off his diabetic medication.  So in essence, we’ve made a trade…Diabetes for Esophagus Cancer!   Tomorrow we’ll see just where we stand in this ‘trade’.  This ‘trade’ can prove to be beneficial with a good report on Friday from the oncologist.

“Anticipation…it’s making me wait!”

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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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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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