posted on June 7, 2003 01:54:43 PM new
Rather than continue to disrupt other threads I'd like to explain to those who might care why I've been away from the boards.
About a month and a half ago we thought my husband was having a gallbladder attack. Went to the emergency room for an ultrasound and sure enough he had several stones. But we were also given the news that there were two very large tumors and several smaller ones [marble sized] on his liver.
Cat scan and MRI showed almost total liver envolvement.
Long story short, biopsy was done and he has un-resectable primary liver cancer. Four different doctors agreed no chemo, no radiation, no liver resection and no liver transplant could be offered.
We sought out many sources and finally found a liver oncologist surgeon, at a teaching hospital was willing to give him a chance anyway....even though the odds are not in his favor, we remain hopeful.
You can certainly imagine our shock and heart-break when this news was given.
I really appreciate the concern of those of you who have responded to my sorrow. Thank you from the bottom of my heart.
Cherish each day....we never know what tomorrow will bring.
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BUT don't let this hold you back from disagreeing with me and my agrumentive ways.
posted on June 7, 2003 02:38:11 PM new
I know we've disagreed on other threads, but rest assured my prayers are with you and your family. Miracles happen every day and there's no reason why your husband shouldn't be the recipient of one. Might I suggest that while he is undergoing treatment that you look into some of the alternative therapies that might help the treatments work better or at least lessen their side effects?
Having lost my husband to a major heart attack in 1999, I feel your anxiety and your sorrow. May God bestow his blessings upon you.
Cheryl
My religion is simple, my religion is kindness.
--Dalai Llama
posted on June 7, 2003 04:59:08 PM new
Linda_K, my thoughts and prayers are with you and your husband at this most stressful time. Please let me know if there is anything I can do to help.
posted on June 7, 2003 09:23:40 PM new
My prayers are with you too, Linda.
I've been away from the boards, too, for a similar reason...taking my older sister for cancer treatments (lung, brain, and eye tumor). They did both chemo and radiation and were very aggressive with the treatment.
It was hard on her, but she is now in complete remission.
I can certainly recommend the Cancer Institute at UAMS in Little Rock. They have some of the best doctors in the world.
I am so very sorry for the pain that you and your husban are now dealing with.I know from moment to moment, it'll make you seem like it is spinning out of control and then you get a glimmer of hope ??
Please know that your friends here are giving you all of their support and love, with are prayers,and thoughts. The glimmer of hope is getting larger every day.
Prayers do bring Miracles, so start thanking God for yours today and everyday, and hold that mental picture of your healthy husban in your mind at ALL times.
Don't give up as God hasn't and he won't.God can turn lemonds in to lemondade.
Take care of yourself, and know that we are here for you.
All the best that God can delivery.{and he doesn't charge a handling fee or a shipping fee}
[ edited by wrightsracing on Jun 8, 2003 08:28 AM ]
posted on June 9, 2003 01:51:01 AM new
You and your husband are in my thoughts as well Linda. You mentioned in another thread that you were awaiting a bed in the teaching hospital, have you been able to get your husband in to one yet?
posted on June 9, 2003 06:34:55 AM new
I will add your husband in my prayers.
Here is a website,for herbal meds.I use the 4 herb tea known as Essiac in liquid concentrate.It is well known for cancer use of all the natural remedys.It will not affect any of the meds givin by the Doctors,and no side effects.The Co. is also very resonable in their pricing.
posted on June 9, 2003 12:44:20 PM new
Hi Linda -
I too will pray for you and your husband - I've seen enough of God's miracles to know that prayer has a power beyond Man's understanding.
I lost my girlfriend to colon cancer when she was 40 in 1998, but I saw miracles in the efforts of doctors and even insurance companies to add quality time and dignity to her life. In some cases, that extra effort can mean survival even when the prognosis isn't good.
God bless you both.
posted on June 9, 2003 01:05:24 PM newLindaK My best wishes and prayers are with you as well.
Sometimes it's just a matter of finding the right doctor. Six years ago my sister's doctor told her that she had stage 1A cervical cancer and a hysterectomy was definitely called for. Two other doctors agreed, but she found a fourth who would agree to do a less radical cone biopsy that would preserve her chances of having a child. Three weeks ago, she gave birth to a baby boy.
Mental attitude is so much a part of the fight against cancer, and the fact that you and your husband are fighting clearly shows that you have that strength on your side.
Any time you need to let off tension with a good knock-down drag-out let me know!
posted on June 9, 2003 01:06:17 PM new
Thank you all so very, very much for your kind words, offers of prayers and concern for my husband. All are very much appreciate by both of us.
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Cheryl - They've always said discussing religion and politics can end friendships and come between people. The fact that people hold different opinions than mine has never been a problem for me. I just like to argue my side.
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oh bones/Mike - I'm so sorry to hear about your sister's cancer, but ever so encouraged to hear of her remission. GOOD NEWS!! Hang in there. She's lucky to have your support. You know everyone hopes she'll stay in remission....forever. We originally told our oncologist here that we wanted to take him to Stanford University [CA] for another opinion on this 'there's nothing we can do for him, it's too advanced decision', but he recommended we see what a doctor at UAMS said first. Said they had two of the best liver cancer surgeons in the state who were achieving great results with advanced liver cancer patients. So you KNOW we're ever so hopeful.
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wrightsracing - Sounds like maybe you've walked in the same shoes yourself??? The range of emotions you speak of,yes, we're experiencing. If you feel comfortable please share your experience. If not I understand.
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neonmania - Yes, we found a liver surgeon who is willing to give him a chance. But because there are so few doctors willing to do surgery on advanced liver cancer, there was a long three week wait. We're down to two now. Time is just dragging as you can imagine. First they'll do an Exploratory Laparotomy of his liver. If they feel there's a place to put in a HAI [a tube which will be in his liver and extend out his side stomach area, so the chemo can go directly into the liver] they will. Then we'll come home for the beginning of his chemo [the oncologist here can administer the drugs] and aggressive radiation treatments....all at the same time. Going to be one sick puppy for at least three months. Then they will re-evaluate to see if enough of his liver is cancer free to be able to do a liver resection.
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junquemama - I've told you before, I knew you have a big heart. Thanks for sharing that herbal site. I'll check it out.
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Politics and religion aside you're a GREAT bunch of very caring folks. Thanks again, from both of us.
posted on June 9, 2003 01:46:51 PM new
msincognito - Well...CONGRATULATIONS Auntie!! That's great news about your sister and I know with doing the lesser tissue removal they'll still be keeping and eye on her for a while. So glad to hear she had the chance to become a Mother. What a joy.
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ferncrestmotel and NearTheSea - Thank you too.
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For us the biggest shock after hearing it was cancer was that it was too far advanced for surgery and other newly developed procedures. It was like WHAT ARE YOU SAYING??? Just go home and die? I don't think so. Not with this stubborn lady.
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The doctors have told us that primary liver cancer is cancer only of the liver. I guess a lot of cancers start somewhere else and then go to the liver. They can tell where the cancer came from by the shape of the cells. They did many tests of everything else and he's clean everywhere else. All of them kept questioning us about his drinking habits and if he had ever had hepatitis. He's a diabetic who hasn't had an alcoholic drink in close to 15 years and has never had hepatitis, least that we're aware of. This type of cancer isn't very common here in the US, it is in other countries though. And most people who get it have usually had hepatitis or cerrosis of the liver first..that then developed into this type of cancer. --------
Just one bit of information I want to share with you. A simple blood test called an AFP can detect this cancer of the liver. When I worked in OBGYN they routinely did AFP tests on the blood of pregnant woman. Never would we have known this same test can also show an elevation of these enzymes that mean there MAY be cancer cells in the liver, IF the numbers are high. And it's pretty much symptomless in the early stages. All listed symptoms are the same one would have if they had the flu.
posted on June 9, 2003 02:43:52 PM newLindaK The mind is an incredible thing. Knowing how strong-willed my sister is, I am more amazed at the three doctors who told her no than the one who finally said yes.
You are a strong-willed person too, and I'm sure that strength will be a bulwark of support for your husband in the coming weeks. Just remember you have to replenish your own source as well - take care of yourself and if they have family services that can help you, use them! With your experience you're probably a lot more informed about what's out there than I am.
Everyday we work with people who are told to go home and die. A great many of them have AIDS, which we all know is a particularly cruel disease. It's their spirit and determination to live that keeps their bodies going. I'm amazed every day.
I hope that this brings some comfort: My cousin was diagnosed with advanced lung cancer. They removed the cancerous lung only to find cancer in the other one. The doctors told him to go home and live the rest of his life. There was nothing more that could be done and he had less than 1 year to live. He didn't take that advice. Instead, he sought out alternatives - herbals (Chinese), guided imagery, aromatherapy, reiki and others. He attended meetings to help keep his spirit up and to help him mentally fight the disease. It wasn't an easy road, but it was far better than just going home to die. He's gone now, but he lived a full 8 years after he was told he had less than 1 year. Those extra 8 years were like gold to all of us who got to spend that time with him. The best part of all is that he spent those 8 years without the agony that sometimes accompanies traditional cancer treatments. When he died, it was without pain and in his own home. See, miracles do happen. And they can happen to you and your family with all of our prayers.
Cheryl
My religion is simple, my religion is kindness.
--Dalai Llama
posted on June 9, 2003 05:31:14 PM new
Linda - That's great! I am amazed at the advances that happen almost daily in cancer research and the changes in prognosis It's a long battle (although the next two weeks waiting to begins may seem the longest ever) and heart wrenching at times but I think that determination is the best weapon and you and your husbands seem to have that in abundance.
If you need a good heated arguement to help the next two weeks go by a little quicker, let me know.... I'm sure we can come up with a good topic to disagree on
posted on June 10, 2003 06:38:44 AM new
LindaK:
{{{You and hubby are in our thoughts and prayers}}}
I'm glad you were able to find a few doctors that are willing to fight this with you.
Please remember to take care of yourself ~ you need to stay strong and healthy while you ride this rollercoaster.
Many of us on the board have had miracles touch our lives, here's to hoping one finds it's way to you.
{{{val}}}
posted on June 10, 2003 09:06:26 PM new
Linda, I'm sorry you and your husband are going though this. Healing thoughts going out to your husband, and strength to you.
posted on June 10, 2003 10:00:22 PM new
Prayer and positive energy being sent to you and to your husband ,Linda. I am sorry to read this. Hopefully your husband will have a miracle.
When I first posted my concern regarding your husband, in another thread, I didn't know the serious nature of his illness. We will all be thinking about you, your husband and your family and wishing each of you the courage to fight this battle.
Sincerely, Helen.
posted on June 14, 2003 10:27:37 PM new
We have wanted to respond Linda, but we could not find the words. From our family to yours, God bless, our love & prayers.
posted on June 15, 2003 12:54:01 PM new
I don't know if this helps Linda, but when my dad had cancer, I read as much as I could about diet and its effects on the liver (and pancreas). One thing they say, is to try and stay away from greasy foods and eat as much green and yellow/orange vegetables & fruit... raw of possible. Take at least 2000 mg. of Vit. C daily. Use olive, grapeseed, or soya oil when cooking or in sauces, salad dressings, etc. Fish only for meat. If possible, get a yoga for beginners tape for your husband and get him to go through some stretches and breathing exercizes each day, or even a long walk each day.
I had also read where these types of cancers respond well to digestive enzymes, so I had my apothocary make up some enzyme capsules made from pigs. They smelled awful but since taking them, his liver lesions shrunk and he was able to eat more and had more energy. I'll get the info for you if you're interested Linda.
posted on June 16, 2003 08:38:03 AM new
Thanks msincognito and neonmania for both your challenges and encouragement.
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Zoomin - Thank you too. You and Mark will soon be blessed with those wonderful babies. Lucky devil You know we wish you the very best.
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stockticker, rawbunzel, chococake and Helen - Thank you all too for your posts. It's good to see some ol' timers around here again.
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Dear Fred - Your posts about you and your much loved wife, Carol, have always given me the feeling you have a relationship much like we do. We understand your difficulty about posting to this thread. Illness and death ARE hard issues to speak about. They make a lot of people feel uncomfortable about saying the wrong thing, so you're not alone. But thank you for doing so anyway. Support is always welcome.
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KD - Funny that you mention eating fish....not meat. You know we're BIG meat eaters and that's changed for my husband since he became ill. Won't eat any meat...makes him gag now. Will eat one small sliver of chicken but fish is the ONLY thing that doesn't have a metalic taste to it, he says. He can't really excersize now...hopefully after the surgery??? He's much too weak right now. A trip from one end of the house to the other leaves him breathless.
But, yes, if you'd like to share the information you have we'd certainly be willing to consider it. Thanks.
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There is a big favor I'd like to ask anyone here. That is if you have any personal experience with people who are called 'medical case management workers' would you please share your experience. You all know me...I'm a skeptic and since this person who has asked to become involved in my husband's care works for a subsiderary of our medical insurance company, I'm leary of the TRUE motives. They say they act as an intermediary between us and the health care providers...but when my husband's pre-op day was denied, as not necessary, this RN wasn't able to help 'fight' our side with the insurance company.
Here is a quote from one paragraph of a three page letter we received from them. My husband is being asked to sign it. quote/ I will be your Case Manager. My role as your case manager will be to work with you and the health care professionals involved in coordinating your care. You, your claims payor [our ins. co], and/or your treating provided will receive written notification on these decision outcomes. I will also facilitate activity and communication involved among your treating providers.end quote.
Sounded pretty good until we read the release/care mgmnt. consent form which states:
I hereby authorize XXX to release copies of information as specified below [pretty open to included all medical info about my husband, past and present] from the records pertaining to my treatment to: XXX [our insurance co] or their authorized agents for purposes of validation and determining benefits payable.
So....what do you think or know about this caseworker management program? I'd really appreciate any info anyone could provide. We haven't made up our minds if we're going to sign this or not. We're questioning why another person needs to be involved in this at all.....and really who's interests are being served by them doing so...their's [ins co] or ours. We know what our benefits cover and what they don't. We've never had trouble communicating with the doctors even though there have been many involved. And I'D like the doctors to be making ALL the decisions about my husband's care....NOT a sub. of our insurance company.
Thanks to anyone who may offer their knowledge of this process.
