Treatment Choices: The Middle Path
Hatshepsut
Member Posts: 336 Member
Being diagnosed with cancer is devastating. It is as if the doctor’s words hang suspended and echoing in the air for hours when he speaks those dreaded words: “You have cancer.”
Experience has taught me (as my husband’s caregiver) that it can be equally devastating to navigate one’s way through the labyrinth of treatment options once you recover from the initial shock of the diagnosis. Chemotherapy? Radiation? Traditional Chinese medicines? And on and on (as Vonnegut, a personal hero, would have famously said.) Making an informed choice is a truly daunting challenge. The danger in making the wrong choice(s) can mean losing your life or devastating your life partner or, given the unconscionable greed that drives drug-pricing, losing your life savings.
And, if that was not enough, the journey through the minefield of well-meant advice of friends and strangers regarding the choice of the “correct” therapy can be fraught with scarring emotional traps.
I’ve been reading this board for four years now. I have learned a great deal from the experiences generously shared by others. I also have come to understand that there is, unfortunately, no one indisputable way to treat cancer. The truth is that determining the correct treatment for one’s cancer rests upon many variables, not the least of which is the patient’s (and the family’s) trust in the treatment selected.
Consider my husband’s case. He has been fighting colon cancer for four years. He was originally diagnosed with stage three colon cancer and then quickly his diagnosis was upgraded (downgraded is probably a better term) to stage four. He has had four surgeries in as many years. He has taken (and has now resumed taking) chemotherapy drugs. He has followed a vegetarian diet (now pretty much a vegan diet) for more than twenty years. We juice. He is elderly (92) by any calendar measure but far younger physically than his numerical age. He exercises. By all accounts, I would say that our approach is a complementary approach to his cancer treatment (and to our life in general) inasmuch as we incorporate approaches like nutrition and breathing meditation into our lives.
Now, as of March, his cancer has been re-diagnosed as locally aggressive (in his abdominal wall). His tumor doubled in size between February and March. We have searched our hearts and brains for guidance in choosing what to do at this point. We have chosen a multi-faceted approach, a middle path. We will use whatever chemotherapy he can tolerate to shrink his tumor. We will hope to have a surgical option down the road. But we will also breathe deeply, eat well, juice and hug each other (and his best nurse, our beloved dog, Misty) and know that those “therapies” can also heal. We will also keep open minds insofar as other treatment options are concerned.
A friend of mine always makes me laugh when she uses her “my way or the highway” terminology to describe people who “know” what others must do. My friend’s wise words have taught me to tread lightly when I give others advice about cancer treatment options, giving them ideas rather than prescriptions.
I appreciate all the points of view expressed here about treatments. As a reasonably intelligent human being, I trust my ability (and my husband’s ability) to sort through the data and make informed (albeit complex and not infallible) choices about treatment options. And, I expect that our choices will, as they have for the last four years, incorporate an ever-changing treatment regimen.
If you know about a new drug about to be released, let me know. If you believe in TCM, educate me. If you have tips about how to deal with the stinking side-effects of chemotherapy, know that I want to know what you know. Just give me the space to sort it out and make the choices I (we) must make. Rather than making me feel the pressure that a misstep on my part might cost my husband his life, help me to intelligently work my way through our treatment choices and respect the hard choices I (we) must necessarily make even if they are not the choices you would make for your own care.
Hatshepsut
Experience has taught me (as my husband’s caregiver) that it can be equally devastating to navigate one’s way through the labyrinth of treatment options once you recover from the initial shock of the diagnosis. Chemotherapy? Radiation? Traditional Chinese medicines? And on and on (as Vonnegut, a personal hero, would have famously said.) Making an informed choice is a truly daunting challenge. The danger in making the wrong choice(s) can mean losing your life or devastating your life partner or, given the unconscionable greed that drives drug-pricing, losing your life savings.
And, if that was not enough, the journey through the minefield of well-meant advice of friends and strangers regarding the choice of the “correct” therapy can be fraught with scarring emotional traps.
I’ve been reading this board for four years now. I have learned a great deal from the experiences generously shared by others. I also have come to understand that there is, unfortunately, no one indisputable way to treat cancer. The truth is that determining the correct treatment for one’s cancer rests upon many variables, not the least of which is the patient’s (and the family’s) trust in the treatment selected.
Consider my husband’s case. He has been fighting colon cancer for four years. He was originally diagnosed with stage three colon cancer and then quickly his diagnosis was upgraded (downgraded is probably a better term) to stage four. He has had four surgeries in as many years. He has taken (and has now resumed taking) chemotherapy drugs. He has followed a vegetarian diet (now pretty much a vegan diet) for more than twenty years. We juice. He is elderly (92) by any calendar measure but far younger physically than his numerical age. He exercises. By all accounts, I would say that our approach is a complementary approach to his cancer treatment (and to our life in general) inasmuch as we incorporate approaches like nutrition and breathing meditation into our lives.
Now, as of March, his cancer has been re-diagnosed as locally aggressive (in his abdominal wall). His tumor doubled in size between February and March. We have searched our hearts and brains for guidance in choosing what to do at this point. We have chosen a multi-faceted approach, a middle path. We will use whatever chemotherapy he can tolerate to shrink his tumor. We will hope to have a surgical option down the road. But we will also breathe deeply, eat well, juice and hug each other (and his best nurse, our beloved dog, Misty) and know that those “therapies” can also heal. We will also keep open minds insofar as other treatment options are concerned.
A friend of mine always makes me laugh when she uses her “my way or the highway” terminology to describe people who “know” what others must do. My friend’s wise words have taught me to tread lightly when I give others advice about cancer treatment options, giving them ideas rather than prescriptions.
I appreciate all the points of view expressed here about treatments. As a reasonably intelligent human being, I trust my ability (and my husband’s ability) to sort through the data and make informed (albeit complex and not infallible) choices about treatment options. And, I expect that our choices will, as they have for the last four years, incorporate an ever-changing treatment regimen.
If you know about a new drug about to be released, let me know. If you believe in TCM, educate me. If you have tips about how to deal with the stinking side-effects of chemotherapy, know that I want to know what you know. Just give me the space to sort it out and make the choices I (we) must make. Rather than making me feel the pressure that a misstep on my part might cost my husband his life, help me to intelligently work my way through our treatment choices and respect the hard choices I (we) must necessarily make even if they are not the choices you would make for your own care.
Hatshepsut
0
Comments
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You are An Amazing Woman
I have heard that acupuncture can really help during chemo.
And everything you posted is so right on! As usual, you nail it.
The best to you and your hubby.
peace, emily who likes to advise not prescribe, encourage and give hope, not brow beat. :-)0 -
Hatshepsut
I wish I had something to offer you and your husband now. I know of nothing new out there. As your husband is far younger than his physical years, you are so much wiser than your physical years might suggest. You said so many great things in your post Hatshepsut.
The best thing I can add is that keeping positive attitudes are under-stressed at times. That is not to say that we are not allowed to gripe about things, cancer stinks, but knowing there is hope helps us get through the days.
Always your friend...
-phil0 -
Clinical Trials
Hatsheput,
I do not know if you have looked into these, but these two seem to be promising. My sister was told yesterday that she has exhausted all chemo options and must now look into a clinical trial.
Sorefanib-Peterw is on this trial with much success
Perifosone-this has been fast tracked by the fda
You are very wise and so supportive for your husband. I can feel the strong bond the two of you have and I know he is blessed to have you in his life and he in yours. I wish you nothing but the best on this next chapter of treatment.
Marie0 -
Hatshepsut -
Traditional Chinese Medicine is based on the concept that one's
body can heal itself, when one's body is working as it should.
Unfortunately, TCM is not "fast working", and if/when cancer
progresses to a point where time is of the essence, other options
would be required, such as surgery, or radiation, etc...
TCM can offset the side effects of other more radical treatments,
and for that...as well as an adjuvant therapy to standard practice,
may be well taken.
I have met individuals in late term stage four that had turned to
TCM with apparently great results, but I don't know their specific
case history, or if it would apply in your spouse's case.
The TCM doc we go to, has two oncologists that sent late term
patients to him. Those patients (as far as I know) are still around.
I mentioned on another thread,"The Syracuse Cancer Research Institute".
The substance is an MAOI, and requires a special diet, and the
absence of most all other medications.
The cost for the amount of that substance for a complete treatment,
was $60. It can not be purchased through SCRI; they sell nothing.
They might be able to provide you with the name of a supplier.
I am reluctant to post the name of the company I purchased my
supply from, but will PM it to you, if requested.
I am saving that substance for a "last ditch" effort, if I find everything
else fails me. It isn't due to my lack of trust in this substance, but
rather my trust in TCM, and aversion to chemicals.
Wishing you and your spouse better days!
John0 -
Hatshepsut,
You have nailed
Hatshepsut,
You have nailed your thoughts perfectly + succinctly. You + your husband are pure inspiration. The love you have for him is beautiful. None of us can "tell" someone else what they should do; we can only say what or hasn't worked for us. Good wishes are coming to you from just outside of Toronto.0 -
I Love You!AnneCan said:Hatshepsut,
You have nailed
Hatshepsut,
You have nailed your thoughts perfectly + succinctly. You + your husband are pure inspiration. The love you have for him is beautiful. None of us can "tell" someone else what they should do; we can only say what or hasn't worked for us. Good wishes are coming to you from just outside of Toronto.
You have always been such an amazing woman, the way you try and give and get the best for your man, he is soooo lucky to have you. I also am so interested in the middle path, I am not a vegan, I like my pork, chicken, turkey and fish too much, hamburgers too, but as long as I incorporate the juicing with my salads, I feel good. Everything in moderation to me! I love John's posts on the TCM ways, the herbs and supplements, and incorporating the green powder, flaxseed oil in my foods, and such. I try to incorporate all....
Though I had to give up my Omega-3 pills, man, everytime I had this little hiccup or burp come up, it would taste like Fish!!! It grossed me out, so I instead just eat more tuna, salmon and I heard Krill Oil was better at getting Omega 3's, where it absorbs it more, and you don't have those fishy cough ups, thats something I may try.
Hugsss to you girl!
~Donna0 -
Clinical study with perifosine will take only 430 people in itsShayenne said:I Love You!
You have always been such an amazing woman, the way you try and give and get the best for your man, he is soooo lucky to have you. I also am so interested in the middle path, I am not a vegan, I like my pork, chicken, turkey and fish too much, hamburgers too, but as long as I incorporate the juicing with my salads, I feel good. Everything in moderation to me! I love John's posts on the TCM ways, the herbs and supplements, and incorporating the green powder, flaxseed oil in my foods, and such. I try to incorporate all....
Though I had to give up my Omega-3 pills, man, everytime I had this little hiccup or burp come up, it would taste like Fish!!! It grossed me out, so I instead just eat more tuna, salmon and I heard Krill Oil was better at getting Omega 3's, where it absorbs it more, and you don't have those fishy cough ups, thats something I may try.
Hugsss to you girl!
~Donna
trial with enrollment expected to take 12-14 months. Looking for those with refractory advanced CRC....as per businessweek.com
steve0 -
Well Written - As Usual
Hi Hatsepshut
I've always found you to be a pillar of strength when the storms come blowin' in. I echo what has already been said by everyone else - you are an amazing woman - you are a dear friend - and I love you too!
You and your husband's story has been personally heartbreaking for me and all of us. The trials and tribulations that you have both endured are the stuff of legends. Your husband is someone whom I admire - his strength and tenacity at his age, is completely remarkable. He's in better shape than I am right now - I'm about to turn 49 and am washed up and finished - he's like the Engergizer Bunny, that just keeps goin' and goin' and goin'...you are both an inspiration to me personally and to this board.
I feel like a failure alot of times on the board these days, when I am unable to come up with a solution or have something to offer you and other folks. Hearing all of the pain and suffering and not knowing what to do sometimes gets very frustrating - I want so much for everyone's pain to vanish and for them to heal and get better.
I know in this thread someone mentioned some clinical trials under way, so hopefully those will help. The other John (snommintj) is really good at clinical trials and I believe I saw a post of his or a reply that he did mentioning all sorts of trials that are ongoing. He would be a good source of info and I'm sure if you PMd him, he would be glad to offer his expertise and wisdom - he's a really smart guy.
One of my fondest memories of you was what you did for me (in my behalf) the day or 2 before I did the DaVinci surgery. I had always treasured your posts and receiving your PM, telling me what you had done was so heartwarming and generous - I never knew people could be so kind to me. That one act has endeared me so much to you. You probably may not even realize the magnitude of that simple, selfless act of kindess & generosity, but I will NEVER forget it - or you! You are one a kind.
Your writng has always touched me - I find the way you "paint with words" spellbinding and intriguing - I always look for a post from you - I know it will be a good one, cause that's how you are
I continue to offer you my love and friendship and hope that this helps to some degree. You have been a good friend to me - and I remember a time when you defended me "tooth and nail." I'll never forget that either.
I know you are looking for facts and help, not fancy words from me, so I'm going to step out of here now and make way for others. Your touching and heartfelt post compelled me to reach out and touch you today. I look forward to the day when you tell us that things have turned for the better.
You are a valued member of this community and it has been my pleasure in getting to know you. I know you are a private person, but we have shared communication and feelings before and I just want you to know how much that has meant to me. You have such a calming, pleasant way that you articulate yourself - I find it refreshing in todays' times - you are such a smart and intelligent woman - wish I had you as my History Teacher when I was in school.
Oh, and before I go...Harley says "HI" to Misty - Woof
I'm sure Harley and Misty would get along famously! He's getting so big, L. He's about 4 months old and roughly 30 lbs. and growing.
A couple of weeks ago, we finally got to meet Harley's daddy, Jerry Lee. There was a dog show in Fort Worth, Texas (we had free admission & parking) and he was competing there. I walked up to him and he "hugged" me and gave me his paw in a shake. He was such a gentlemen and so well mannered - and so beautiful and majestic - just took my breath away!
His owner was there (Harley's Godmother) and together we watched Jerry Lee win:
1. Best of Breed
2. Best of the Sporting Group
3. Best of Show
How thrilling! I was like a proud papa - I had feelings that parents must have watching their sons or daughters play sports or be in a play or something. It was one of the greatest days of my life - and one that I was proud that Cancer did not take away from me - those are the days worth living for, I can tell you!
Anyway, you are in my heart and on my mind - and please tell Dixon that I am pulling for him - and tell that little cutie, Misty, hi from us as well.
-Craig0 -
Thank you.
Thank you for your kind and supportive replies and for the information you have shared with me.
I'm grateful to have this board.
Hatshepsut0
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