The Purple Jacket

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!

Medical Directives, Durable Power of Attorney, Health Care Proxies are all important documents to have readily available when you or your loved one is working through the health care system.   These documents are equally important for non traditional families in order to establish communication between health care service providers as well as securing  visiting rights  for their partners and loved ones.

I was recently told of a story of a women who had enlisted her sister as her health care surrogate.  The health care surrogate did not agree with her sisters life style, denied her access to all her friends, instructed the staff to dress her  only in the clothes she had purchased for her only because the surrogate did not approve of her life style.   This cliff note version of this story is one of the saddest stories that I have ever been told in regards to heath care directives.

Imagine spending your life with someone only to be denied access to them because of someone’s bigotry? 

In my book, advocacy does not mean control, rather it means to stand up for your loved one in the manner in which they want to be represented

As ‘The Little One’ and Imuddle through the legal jargon in order to get him the best care plan possible,  these documents are critical to have in place.  I bring this topic up today to remind all of us for the need to have ‘all our ducks in a row’ because you just never know when you are going to need your medical directives, health care proxies and living wills.

However, it just makes sense that when a patient is of sound mind and body, a simple verbal permission by the patient should be sufficient to ensure communication between the patient’s advocate and the health care staff.  That is not always the case, which is way having the legal documentation in place is critical at these times.  Dealing with a critical  illness is difficult enough, having to worry ones advanced directives just makes it even worse.

 I am so proud of ‘The Little One’ as he fights to rid this disease from his body.   His determination to see this through is admirable; I am not sure that I would have the same strength and courage that he has demonstrated these past four weeks.     With just seven more treatments to go of radiation and one more treatment of chemotherapy, we are in the home stretch of this first and hopefully last round of cancer treatments.  There is indication that the tumor has shrunk, yet we will not know the results of the treatments until 30 days past the completion of the radiation and chemotherapy.

We will make it through these next 10 days and point to Wednesday October 5th…When ‘The Little One’ returns to our northern home

Earlier this week I posted about ‘mixed messages’ that we were receiving from the radiologist and chemotherapy in relation to the amount of protein drink that the little one should be drinking on a daily basis while going through his cancer treatments.  I am happy to report that we are now all are on the same page, it was just a minor philosophical difference in their treatment plan that needed to be tweaked.   Treatment plans are just that… plans; sometimes the game plan has to be changed in the middle of the game.  The key to any change in game plan is to have the proper data at hand so that intelligent adjustments can be made.   It is not unusual for professionals that have diverse opinions on how treatment plans should be administered.  What is equally as important is for those professionals is to  have the ability to communicate and change the game plan in order to have a winning formula.  Every game is different, as is every patient. Sometimes you just can’t go by the book, you have to make an adjustment in the middle the game. Earlier this week I had not intended to be critical positions as not meant to be critical of physicians, but rather to demonstrate the need for communication and consistency within the team. The physicians are the “managers,’… the caregiver is the ‘coach,’… the ‘patient’ is the player in the field;  if all three components of the team are not communicating properly, then the team is in chaos.  The coach is often the advocate between the manager and player.  Advocacy is the main role of a caregiver:  I am happy to say that we are now all on the same page!

The news continues to get better for ‘The Little One’ as we have had a number of good days in a row.  Lots of energy, eating well and good conversations with the staff at both the radiologist and the chemo-therapist this week.  We believe that the tumor has shrunk as food is going down the esophagus with a little more ease.  One of ‘ The Little One’s” favorite food is baked chicken and  until this week,  ‘The Little One’ not been able to enjoy baked chicken because of the tumor in the esophagus, it was just to difficult to get through the esophagus path: Quite a relief to enjoy something so delicious as your favorite meal without the worry of  pain as the food travels down the esophagus. How often we take things for granted like eating a moist juicy piece of chicken, until that delight is taken away from you by this insidious tumor.

We have now completed three weeks of the five week program. While it’s been an uphill battle, we are pleased with the progress that has been made. The unknown causes fear and trepidation, we certainly experience that during these past few weeks. We know more than we did three weeks ago, and I am sure that we will learn more over the next two weeks leading up to the completion of the treatments. The treatment plan calls for a 30 day reprieve from chemotherapy and radiation after the completion of the treatments in two weeks.  Once we are past 30 days from the last radiation treatment, ‘The Little One’ will have to go through the same set of tests that revealed the tumor in August. These tests  will reveal what the aftercare plan will be; we are hoping for the best!

As we move forward trying to cure the physical aspects of this disease, we are keenly aware of what this disease does to the psyche. While cancer affects all of us, the emotional roller coaster of having cancer can only be realized by the person who has the disease.  While we hope and pray that the chemotherapy and radiation destroys and obliterates the tumor, we are mindful that in order to successfully complete these treatments, there has to be a holistic component to the treatment plan. That is where our faith our family and our friends come in because it is through your love and compassion that we are able to make it through these treatment days.

Let’s face it, we have all been envious of that friend of ours who can eat anything they want; cake, cookies, donuts…and that all American favorite…French Fries with out leaving a trace of those fatty foods on their hips! Some of us just look at those delicious and temping foods and the ponds goes directly to our hips. Oh, and did I mention ‘that friend’ who gets to eat all those foods (while keeping a slim and trim body), does not exercise, too! We are all left to wonder…’how does that person do it?’ The only explanation is…everyone’s body is different, everyone’s metabolism is different; our bodies react differently… that is the uniqueness of our individuality.

The same holds true for those who have to undergo cancer treatments; each individual reacts differently to radiation and chemotherapy. As we prepared for the start of the cancer treatments last week, ‘The Little One’ and I read as much as we could to try to get an understanding of what lies ahead. Yet in reading all the medical jargon, one thing became clear……the uncertainty of it all.

The first week of chemotherapy and radiation is complete, there have been some good days this week and there have been some bad days. We really did not know how ‘The Little One’ was going to react to the treatments until he experienced the treatments. As we move into week two, we learn from our experience from week one and forge ahead. We know a little more than we did last week, we are bound to learn more as we move ahead.

Statistics can be rude and misleading, even when they are factual because statistics do not take the individual into account, statistics only take the disease into account. If we were to pay attention only to the statistics, why even bother taking the treatments? Did you know that 100% of people who are born, die? Does that statistic keep us from living our life to the fullest? While statistics can be informative, they can paint a bleak picture; who needs that type of ‘encouragement?”

Mindful of being realistic, we have to foster hope, love and encouragement because one really does not know what lies ahead for anyone of us. Our best laid plans can be put to rest in at moments notice; there is to much of life to live to let a statistic get in the way. While informative, statistics do not provide hope or despair. It is only through the love and compassion of our family and friends that we gain the strength and courage to deal with the lemons life can hand to us. Our minds are made up…don’t give us the facts…just give us the love…the hope…and the encouragement that statistics cannot provide in order to beat this cancer!

The next time you see that friend of yours enjoying that French Fry, Donut or the rest of the mix…remember our bodies react to things differently, it might even be good to indulge in one of those tasty treats yourself!

Thanks for reading…”The Little One’ and ‘The Bow-Tie Guy’ wish you have happy Labor Day!

The phone rang and he said….”I’m radioactive” …I said to myself…”I’ve seen you go nuclear a number of times!”

The first two days are in the books and we are quite pleased at how ‘The Little One’ has reacted to the radiation and the chemotherapy. As he said to the chemo-therapist today…” I don’t care what you put into my body as long as it is going to help me beat this cancer.” This is the prefect attitude that we need in order to achieve our goals and beat this disease! As we continue to move forward, we are taking it one day at a time. Funny that he had a ferocious appetite tonight, something that has been missing for quite some time.

The nurses who work in the Chemotherapy office are to be commended for their care and their attitude. So many difficult cases to attend to on a daily basis, yet they are the on the front lines providing hope, dreams and the reality to all of their patients. We have the utmost respect for the nurses; they comfort, they care, and they become attached…nursing is a particular calling; we are regretful for their kindness and help. During our three hour treatment today, we were informed that ‘The Little One’ is receiving a mild form of Chemotherapy; we are thankful for that news because one never knows what the reaction will be to these treatments. May the good news continue to flow and may there be a gentle breeze at our backs.

This weekend was filled with a tremendous amount of emotions as we prepare for the start of chemotherapy and radiation on Monday.  After a lovely and quite evening at home on Friday, we ventured out Saturday night for a splendid evening of celebration as two of our friends celebrated their 25th anniversary together with a commitment ceremony, only to be topped off by a lovely reception at the Chase Park Plaza…Quite a posh evening  for this ‘Mutt and Jeff’ combination…yet we enjoyed the evening immensely and ‘The Little One’ held up well, albeit that we had to duck out a tad early do to fatigue.  (why did I not take a picture or two Saturday night?)

One of the things that struck me was the fellowship that we shared with so many friends from the Gateway Men’s Chorus Saturday night…One of the things that I will miss this year will be my involvement with the Chorus.   While serving as President these past two years, we have been fortunate to gain so many new friends;  it is through our family and friends that we will gain the strength we need to over come this illness. So many well wishes and words of encouragement on Saturday evening left us with a humble heart.  While I will miss the Chorus, I know that the Chorus is in good hands with the new Board President and and Board of Directors.  I will be rooting for them from the sidelines, just as they are rooting for us as we embark on this journey. 

As I thought about the kindness and love that was demonstrated to us Saturday night,  I reflected today as we drove to the airport about the meaning of friends  and how friends are a precious commodity and should never be taken for granted.  Friendships are not like faucets, they can’t just be turned on or off at a moments notice.  The true meaning of  friendships are those friends who argue,who love, who care, who regret, and who argue all over again, yet accept you for who you are and what you do.    Sometimes things happen in life and before you know it, people you cared for… are no longer around.  Some you miss more than others, some you know you can call at a moments notice who will be there for you in your time of need.

Often times when a friendship is broken, it’s hard to know what to do or how to fix it.  Sometimes a simple sorry is all that is needed, other times more time apart is needed to heal the wounds.  Life is to be celebrated; no anger, hostility, resentment…life’s to short to have those feelings, yet our human frailty and ego often stands in the way.   Sometimes you just have to let go…

Life can take us all on a different paths, people change, situations change, yet the love of friends, both close and far never fads.   On Sunday, ‘The Little One’ headed back to Fort Lauderdale to start our treatments for radiation and chemotherapy.  These are truly OUR treatments, we just experience the treatments in a different way. Our friend Tom picked ‘The Little One’ up at the airport…Tom and a host of friends in South Florida are going to keep an eye on ‘The Little One’ this week as we monitor the results of the first week of radiation and chemotherapy.

Monday morning at 10:10 am we start our first round of radiation to be follow with chemotherapy on Tuesday…

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.   

There is so much that is ahead of us that is unknown; yet what would we do without a friend… What would we do without  friends?