Today was the visit to the Palliative Doctor...(Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment.)The doctor is different from any other kind we have visited...this was our third session....first, he focuses on what is going on...not only physically, but mentally, spiritually, etc..etc...the state of being....the thoughts...the feelings...the questions...the unknowns....etc...
Linda talked about the last two days and how difficult they were....that she took a pretty deep drop in her quality of life (recognizing she felt a bit stronger and better today).....she talked about recognizing where she was in the cycle of chemo and that she was starting to question whether it was worth continuing.....we discussed what the doctor in Bend (Dear Dr. Kornfeld) had said about getting to a point where the quality of life becomes more important than prolonging life through treatment.
This doctor is very quiet and contemplative...his job is not to offer hope or have a "go get them" type of attitude..his demeanor is more quiet and offering ideas and resources to support the patient in where they are at in their disease and state of being. Linda describes him as "laid back"...Dave prefers "contemplative"
Anyway he suggested contacting hospice care (Hospice is a type of care and a philosophy of care that focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual or social in nature. The concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those in their own homes). The purpose would be to understand what they do..what support they offer...it would not require "signing on" but rather having the information when the "need" for them is desired.....the important concept as we understand it is that all care as currently experienced such as the chemo and tests and all are stopped and that care is provided in the home as described above).
The Doctor also suggested completing a POLST (Physician Order for Life Sustaining Treatment) which directs emergency personnel if required (EMT, ambulance, fire)...it goes beyond an Advanced Directive (An Advance Directive, also known as living will, personal directive, advance directive, or advance decision, are instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or incapacity, and appoints a person to make such decisions on their behalf). this will be done immediately.
The Doctor felt Linda and Dave were pretty savvy....we "somewhat" understand where we are at and where we are headed....He also questioned whether Linda was "angry"..she preferred "frustrated"...that there is no miracle..that this will be comping to a closure....she is frustrated losing the clinical trial...the "miracle" drug ..etc..e.tc...but she doesn't let this control her life....
The Doctor also said that patients don't really die from cancer....falls are a major factor...which we have been greatly worried about...the Doctor will send out some folks to evaluate our home and the dangers..and ..and..to provide a safe environment. He also discussed how infections occur etc as a result of the damaged immune system....Blood clots....etc....
He also discussed the mental well being of a patient who initially goes through incredibly disastrous chemo and radiation as Linda did initially because the patient believes there is hope for a cure as opposed to the chemo now which offers no cure....patients approached these in a different way....and their well being is dramatically impacted by the latter.
The nurse, Karen, who looks after Linda's care came in and discussed some off Linda's immediate concerns..a rash..blood deposits in the nose...a bleeding outer left ear.....the desire for extra fluids to support her well being when she is down, etc. Linda will go back Friday for fluids and then anytime she feels they are necessary.
The oxygen is causing the nose to dry and bleed..we have added a humidifier to the home which might ease this..this and the rash might be due to the recent cold and dry weather (now turned to rain and rain and rain...
Claudia and Claudine came today to visit with and care for Linda.....they were a wonderful addition...they understood Linda sometimes just doesn't want to talk or engage these days but values the company and support...again, Linda is feeling a bit stronger than in the past two days (which were very difficult)...
Last night son Jim and daughter Janine came over and cooked dinner.....alright! .....a break! ....and good company.....Claudia helped with dinner tonight..we can get used to this pretty fast!
Again, no magic anywhere..just realness in life....it is life.....a process we would not have chosen.....we are approaching it in the best way we can.....thank you for your support and understanding and not suggesting we go to the Ukraine where they might have some "miracle".....(a bit of humor here)....Linda is very concerned about how all this is perceived by readers...that there might be those who will want to question Linda's decisions....and impact her decision making....this cannot happen....Linda will want and welcome support.....for whatever she does and trust she is able to decide what is best for her....it is her "journey"....please be aware of this in your thoughts and responses...please.....
16 comments:
As always you are in out thoughts and prayers.
Love,
Liz and Jack
That should be our. Oops.
Liz
Dear Linda & Dave;
What a complete report...you really keep those of us on your "team" well-informed.
I can recommend hospice. They support not only the patient, but also the caregivers and they are "on-call" 24-7...and make housecalls, too. And, with a phone call to them, they can make things appear. We had a hospital bed just a few hours after I called and said we needed one--and it was late on a Sat. night.
(A friend went to a hospice house and she got good care there.)
What a treasure you have in family and friends who come to your home to provide you with love and support (and food, too). We long-distance folks send love and support as well.
Love & prayers,
Ruth Ann
Hi Dave and Linda:
It sounds like you received a lot of valuable information today. I know that palliative and hospice caregivers are very speical people. I am sending prayers and hugs to you both.
Love, JO
Just sending you our thoughts and lots of hugs from the East Coast... think the rain you've been getting is headed this way!
Hope today's a good one!
Love ya!
Jim and Swee
Right now as I gaze out my window, searching for words, my eye is captured by a glistening line. It's not the phone/elec. line -- wrong direction. Yet it's not a branch -- too long, too straight. Then I understand -- it's a spider's web -- used to move from one spot to another. But it's over 100 ft away from the house. How can something so fine, so delicate, appear so brilliant and strong and be so obvious in the sunlight?
Kinda like life -- our lives are but a journey -- a strand we follow from one place to another. And it's as delicate a strand as the spider's -- how tenuous our physical lives are. But in the glorious shining Sun of Universal Love and Energy, it's a golden cable that shines brightly to others, and clearly shows the way.
Linda, you are wrapped in the golden glow of healing love and peace -- now and always.
hugs,
Susie
Linda, do not spend one ounce of energy in being concerned by the Peanut Gallery's perceptions. We are here to support you knowing that YOU know what is best for YOU. What a wonderful trait. Many of us spend a lifetime trying to develop it. We love you and want what is best for you. That makes it all the more difficult when we see you go through such challenges.
Rest assured that the Peanut Gallery admires the way both you and Dave have traveled this journey. It is life-lesson for all of us.
Dave and Linda, we thank your friends and relatives who are able to pay you a visit. Although we are cannot be with you in person, rest assured that we are surrounding you in spirit with love and support.
Marilyn
Just to let you know today that I love you both. I will save and cherish the comments you shared today and they inspire all of us to live each and every day to the fullest. They absolutely do not come any better than you my dearest friend. Judy
I'm leaving in 3 minutes so I can't be as thoughtful as I'd like to be but please PLEASE know that the blog-nuts (we special peanuts) are only 100% supportive of you. Both of you. No one can second guess another's situation. You have consistently made intelligent informed decisions with the best information you had at the time. You continue to do that and, amazingly, take the time and care to inform the rest of us with valuable insights that we could never get elsewhere.
Love you,
Marjorie
Just wanted you to know we're sending prayers your way.
Love,
shelly & jason paul
You continue to be in our thoughts and prayers. We love you! Darrell and Shar
Linda and Dave,
Keeping you in my thoughts and prayers and truly admiring your continued strength through this process.
Scott
You are in my heart dear friends. I have always loved this saying from Ralph Waldo Emerson - "What lies behind us and lies before us are small matters compared to what lies within us".
Love you both!
Ginnie
Linda and Dave- We all love and support you in everything you decide. You are an amazing couple with many amazing strengths. We are all here for you. Thank you for the continued updates. Sounds like a good informative day! Rest up!
I remember when my mom came to a similar decision about her treatments. She qualified for an experimental treatment, but felt she'd had enough. It came down to a desire to enjoy the end of her life, as much as she could, rather than feeling sickly due to the treatments that would likely do nothing to help her. I don't think my Dad ever really felt good about her decision, but he supported what she wanted. I totally understood where she was coming from and, although it was difficult to accept what this would inevitably mean, I felt she was right to stop treatments. I know you are making the right choice, too, Linda.
The hospice care people are simply amazing. Not only will they provide care and comfort for you, Linda, they'll also provide information and guidance for Dave. Our hospice folks brought a hospital bed to our house, set it up just where we wanted it, then came for regular visits to be sure Mom's needs were met and to help us understand exactly what to expect as we journeyed through the end of life process. We could not possibly have handled the stress and uncertainty without them. Do make use of all they offer.
Linda, I hope this will not be too difficult a thing to read, but if you have not yet planned your funeral, please do so now, while you are feeling well enough to make it into the memorial that you want it to be. Before my mom became too ill to do so, I went with her to a local funeral home and we planned everything. It was actually rather a fun process (as long as you bring with you a very dark sense of humor!). You can set up your memorial to be precisely what you wish it to be. It was a comfort to mom and I to know that everything was planned and would be handled when the time came.
I cannot express how much I love the two of you. We have had such wonderful times together at the track and during my visit with you in Florida. I still so fondly remember that first moment that Dave & I met, waiting for Jimmy Vasser's autograph. Nor will I ever forget your kindness and enthusiasm as we both increased our involvement in the series. What great and happy times those were.
But, we cannot stop life from moving forward and bringing us all, eventually to this moment. Linda, you have taught us all so much about bravery, so much about keeping a positive attitude and living life to the fullest. You continue to teach us so much. Thank you, from my deepest heart, for allowing all of us to continue to follow your journey and support you, as we learn from your courage.
Enjoy your life, Linda. You have a good deal of living left to do in your time and I know you will enjoy it to the fullest (as you have always done). Please call upon all of us here on your blog should you need us for extra support. We are all here for you.
My love to you both, as always.
Thank you, Dave, for keeping all of us in the loop and informed about Linda and your journey. We have been very impressed by and involved and supportive of Willamette Falls Hospital Hospice program. They have wonderful care givers and their chaplain, Joanne Petry, is truly an angel here on earth. If you have any questions or if Chad and I can be of help in any way, please call. Love and prayers go out to both of you and
yours.
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