As promised to my cancer up-date list, here is the “2/4/13 up-date” together with the content of yesterday’s consultation with a couple of my oncologists:
“After having a rather sobering family conversation about the present condition of our war with cancer for the past year or two, we thought to send a very straight forward enquiry to out oncologists for who we have the greatest respect, and who have been very cooperative with us to date. Our daughter, Melissa took the lead in writing the letter for us:
Dear Dr. Reese,
Several of us had a long conversation last night on how to best proceed, but without an expert opinion it has become very difficult to navigate. In very simple terms, we need your best guess on where we stand in two areas: 1. Chances of winning or gaining against this cancer – 2. How much time do you think we have left? Our concern is that Dad’s energy level has hit an all time low and his pain level an all time high. If his time with us is short and our chances of doing anything against this cancer are slim at this point, we really need to know that. It would be hugely detrimental to our family to have him be referred either to a Maryland Clinical Trial or put back on some kind of chemo regimen designed to reduce tumor size to something more operable, only to further drain his strength and energy, to a place where he misses the moments left for good communication only to be referred to Hospice. On the other hand, if this is just a low point on the journey and we have a real chance at doing something against this cancer, AND we still have some time left, then we want to FIGHT!
When my cousin died in Sept 2011, she was given lots of false hope right up until the end. Several of us had urged her to have specific conversations with family members and to leave some video messages for her 11 year old son. But she didn’t do those things because she was fighting the cancer and when the end came it came so fast and she was in such bad shape that none of those things got to happen. If Dad only has a few months left with us, there are conversations, including family conversation that he would like to have, things he needs to write, and things that he wants to do, and it is really important to all of us that we give him the time to make those things happen and not use all his energy and emotion on chasing down treatments that may have little or no chance of success.
So that’s where we are. We’re still hoping that in a few years, Dad will be with us and we will look back on this time as his “rock bottom.” But we don’t want our desire to continue the fight to prevent him from completing his very real bucket list. Where do YOU think we’re at? We wouldn’t bother you with this when we already have an appointment at Rutherford Internal for Tuesday, (yesterday) but we need to try to make the out come of that appointment as practicable as possible.
Thanks as always for your knowledge, help and your willingness to advise from afar,
-Melissa Stolasz, Tim, William, Jay, Carleen, and Heather Ferris”
Night before last we received the following response from Dr. Rees:
“Dear Ferris family,
Your questions are very good, and they demonstrate your family’s commitment to face this disease with eyes wide open. Jay made it clear to me that he is interested in helping advance the field through invention, investigation and research, and he has done this consistently. Jay has also been helpful to point out from the patient perspective some of the frustrations faced with the medical system in this whole process. Part of the limitations in knowledge we have is in knowing the prognosis.
First to review: As you know metastatic colon cancer is not felt to be curable, except in the circumstance where there is limited, resectable disease — such as in isolated liver metastsis. We do not have data on curability for isolated abominal wall metastasis, but if a patient had limited disease AND was responding to treatment AND had a very good level of performance (active and caring for themselves) AND was otherwise in good shape I would personally consider the option.
If surgery is not an option then standard treatments are palliative, to try and prolong life and hopefully improve the quality of life. The tradeoff is the side effects, and the question for the patient becomes one of how much side effects are they willing to tolerate for the potential benefit offered.
Clinical trials offer the potential of better results, but of course being trials we do not know the data regarding risks or benefits.
The prognosis for patients who have been through standard chemotherapy with this type of cancer and who are not surgical candidates is usually a few months. We do have something called a Palliative Care Prognostic model which is not specific for colon cancer but which uses symptoms, wt. loss, etc. to try and estimate more precisely, but of course some things are not knowable.
I am sorry to hear about your cousin. Regardless of what we decide on future care options, I urge you not to wait on the important things. In the book “Four Questions,” written for patients in this situation, Ira Byock discusses the issues to make sure and address. I suspect that in your case this is preaching to the choir but it may be useful to review.
So in summary, from what you are describing from the energy standpoint, I suspect a limited life expectancy. I do agree that it may be too difficult to consider the treatments at the NCI if you are feeling low, as these trips back and forth and the treatments can take a lot out of you. We need to review all the options we have, including hospice, and discuss the pros and cons of each approach.
I know these are tough issues, and I appreciate your willingness to openly discuss.
As of this morning this appears to be where we are. We are very grateful for all your prayers and time they have been able to buy for us, allowing us to get some things done that have been very important for us as a family and for me personally to share things, which have and remain very important to me as a serious student of the Scriptures. We are also so very grateful for all your love and prayers, but are now winding down to the end of the battle. The Lord has been very gracious to us, and we are now having to focus on things of highest possible priority for us as a family and in a limited sharing with the time left for those things that The Lord has built into my life for the past 40 or so years. That is where we hope to be concentrating what time we have left.
We Love You and are so grateful for all your prayers, good wishes, and support over these precious years He has given us together.
As there is opportunity we will try to keep you in touch with how things are proceeding.
Jay, Carleen and Family
P.S. You can also keep track of me on my blog lovinglikegod.com as I have time opportunity, energy, and inspiration to post from time to time. I hope to focus whatever time I have left there.”
That brings things up to date as of yesterday morning. In the afternoon we had our oncologist appointment, and heard by phone of two more consultations to come, one with the Clinical Trial center in Bethesda MD, and the other with a possible surgical possibility locally.
These promised consultations by phone or email often don’t happen as fast as one would like, so I will give you another mini-up-date from the vantage point of this morning.
All things considered at this point it is looking like two weeks at the outside.
While many of my friends already know me well enough to question my sanity where my exploration of the truth of God’s love and relationships gender neutral are concerned, I should say for the benefit of all that it is not so clear how much longer I will be clear even for those who are spiritually discerning. I will be doing my best with what ever I have left however, so don’t unfasten your seat belts quite yet. I’m still armed, considered dangerous in most religious quarters, and likely to remain so as I have less and less to lose by being as honest as a cup already being poured out can be. I will try to be careful of the reputations and feelings of those I have come to love so dearly over the years, but, for all of that expect to continue to be merciless where the flesh is concerned, especially religious flesh, even my own.
Perhaps that’s enough for now to catch you up on where things are. I’m already trying to adapt to the best painkillers they make for this fleshly kind of warfare. They tell me it can take a while to get used to it so that occasional rationality is still a hope.
I really can’t speculate as yet as to how I might be able to do where the spiritual pain killers are concerned, but I’ll be doing my best to stick close to my Doctor of Doctors in that department. :-)
Love you ever so much Uncle Jay! Praying for strength and that the pain would lessen.
I love you Jay, I treasure the Treasure within you, your life is a sterling example of being ‘in’ Christ. I look forward to our many conversations whichever side of the resurrection that they may come. Grace and peace to one and all in the Ferris clan.
Much love to you (((hugs)))
Jay, old friend, my thoughts have been with you ever since we reconnected since such a short time ago. I thank God for that happening. My prayers are with you always. I have sent this blog on to my brother. I do not know if you two ever connected or not. I hope you don’t mind my letting him read this as I know he loved and loves you now. As do I dear, second older brother. My your life continue with God forever. LOVE!
We love you, Jay. You and Carleen are in our prayers!
I really can’t find the words for what I want to say. All I know is that whatever happens, Romans 8:28-38 has been on my heart for you for some time. Eternity is only a breath away, and whether we see each other one day here or after a brief interlude, we always and still have the victory in our Lord Jesus Christ. I am only at the beginning of a clue about what that means.
You are dearly loved,
A little song for you and Carleen and your family:
Dear Jay & Carlene and family. My life has been made much richer because I was given the opportunity to know you. Your example of love born from above is and will continue to be a inspiration and motivation for me to fight the good fight of faith. To press on to the upward call in Christ Jesus. I will never look at relationships the same and that is for the better. The genuineness of your love is your benchmark. May God abundant blessings be yours now and in the future. I love you guys, butch renaud
Thank You so much for your words of encouragement! :-) Theses are some of the richest and rewarding days of my life to date!
I am new to your blog so very sad to learn of the challenges you face. I will pray for you to finish some of the tasks you have set yourself. And I will pray for your family, too.