Tag Archives: radiation

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!

Life

 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! 

20130919-000649.jpg

 

3 Comments

Filed under Caregiving, The Purple Jacket

Positive Thoughts Helps Ease The Diagnosis


Today we had our second visit to the radiation oncologist to secure images on TLO’s spine in order to determine the course of action for the upcoming radiation treatments. We were so pleased by the experience we had today because of the care and concern showed to us by the technician who was taking the images.

20131015-222438.jpg

Luis was a class act today. He took the time to thoroughly explain to us the procedure, what to expect and when we would know of the results. He listened attentive to our questions and made us both feel at ease. But I think what set the positive tone off was the way he greeted us in the waiting room. He went right over to TLO, extended his hand and introduced himself, then turned to me with the same warm welcome!

His approach was truly an ice breaker!

20131015-222947.jpg

Luis’ style today was not only professional and friendly, it was therapeutic! His demeanor today completely put TLO at ease, which has lasted the rest of the day.

“I really feel good today” said TLO after dinner this evening. “Was my cooking that great tonight I asked?” “Don’t kid yourself” he said. “I really came away from our appointment today feeling good about the how I was treated and the whole environment of the office. Luis was so nice to me and listened, that does not always happen in these settings. I am so glad that we are going to this office for treatments, I feel safe, secure and appreciated!”

I agree with him 100%!

20131015-224223.jpg

As the night has progressed, TLO is resting comfortably and we are both at peace thanks to Luis’ excellent care today. We don’t look at the future as being bleak, we look at each day as a blessing to share with each other, to care for each other and to be open to the days ahead.

We’ve had our cries; we’ve had our frustration and now we just deal with the reality of what is in front of us. One simple act of kindness by Luis today help alleviate 10 days worth of fear and frustration. Our hats are off to Luis!

20131015-225104.jpg

You see… We might have cancer…but cancer does not have us!

 

 

3 Comments

Filed under Caregiving, The Purple Jacket

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

1 Comment

Filed under Caregiving, The Purple Jacket

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.

2 Comments

Filed under Caregiving, The Purple Jacket

Mixed Messages?


Anyone who has had to deal with multiple (specialist) physicians at the same time know that is can be difficult to get  physicians to communicate and share patient information.     In my opinion, the perfect physician is one who takes the time to explain medical terms in common language, while collaborating with other physicians (who are on the same team with the patient) so that the information that is being delivered to the patient is consistent and  understandable to everyone involved with the patient; but most importantly.. to the patient them self. 

As ‘The Little One” enters into his third week of radiation and chemotherapy,  we have been getting mixed messages from some of our team members of physicians.    While it is agreed by all team members that “The Little One’ needs to add as much protein  to his diet as possible,  an issue came up this week that left us scratching our heads.   Just how much protein is enough...I guess that depends on who you ask!

Until you experience  chemotherapy and/or radiation,   you really don’t know what to expect.  ‘The Little One’ has had a roller coaster of experience over the past two weeks  because, as we know…’what goes in the body, eventually has to comes out of the body!

Which takes me back to the issue of the protein.   Both the radiologist and the chemo-therapist have suggested that “The Little One” drink over the counter protein drinks…Boost, Ensure…etc to help inject additional protein into his diet.   Yet here is the puzzlement…radiology suggested that “The Little One” drink as much as possible, while the nurse in  chemotherapy suggested no more than one a day?   “‘The more protein drink, the more likely for you to experience constipation”, said the (chemotherapy) nurse.  “Drink as much as you can as the protein drink will build strength, it is good for you” said the radiologist!

Confusing…YES!!!   Both “Team Members” believe their philosophy is correct; yet both Team Members do not have to deal with the after-effects of  chemo, radiation, or the liquid protein drink.   Remember…what goes in the body, somehow has to come out of the body.  The stress is only heighten when we receive mixed messages on how to resolve these uncomfortable symptoms of diarrhea and constipation …all at the same time!    Both of our team members are steadfast in their professional opinion; both of the team  only deal with the cause (cancer) not the effect (chemo/radiation etc) which makes me wonder, how this “team” should function?

prairie-679014_640-e1430319357812

Most successful teams work within a structure and communicate well; this team has to act in the same manner.  This week, The Team will be instructed to provide an updated care plan for  The Little One with clear directions on food and liquid intake; we will engage the dietitian as well.

We are two weeks into the process and there is a clear pattern on how The Little One is reacting to the treatments.  His best two days are Tuesdays and Wednesdays;   His worst days are Thursday thru Saturday as the Chemotherapy passes through the body. (The addition of the protein drink on Thursday thru Saturday only heightens the dualistic symptoms that he experiences on these days.)  Sunday and Monday seem to be the neutral days,  yet he is tired and worn out both mentally and physically from the  calamity of the chemotherapy passing through the body.

Good teams make adjustments, while listens to messages both verbal and non verbal, along with providing  consistent communication so that everyone involved in on the same page.  This is no time for individuality or for ego; no teams wins on mixed messages, no team wins as an individual.

We  continue to move forward with hope, with determination and most of all…with love.

Leave a comment

Filed under Caregiving, The Purple Jacket

Cure Esophagus Cancer


The Purple Jacket and The Bow-Tie-Guy support research to cure esophagus  cancer. 

Stay tune to our blog for further information on how you can help!



Leave a comment

Filed under Caregiving, The Purple Jacket