okansas

This is wonderful. THank you Marion.

Percy, Mary and all of you who are fighting this horrible disease. I’m sending up prayers for you and your caregivers.

Having watched my husband fight this disease, I have so much admiration for the courage and bravery that each of you display. I know it isn’t any consolation, but you are all heroes to me.

Don’t hesitate to share your thoughts your worries your fears. Many of us have been there or have been with a loved one who has been there. This forum is for you. In hindsight, I wish I’d known more and had my eyes wide open while helping my husband, especially at the end. We both would have been better prepared.

So I advocate for sharing more about the reality of this disease and the path it takes, not less.

Peace and love to each of you,
Margaret

Crissie,

Thanks for this thread. I go over what may have been symptoms all the time in my mind.

Some itching in the spring, but not so extreme it caused concern. Then it went away on its own.

At the time, we suspected nothing more severe than his annual allergies, with stuffy nose, drainage in his throat, coughing. It was a bad allergy season last spring, so it didn’t seem unusual.

He had a few stomach events — some apples that didn’t agree with him. Some nuts that upset his stomach. Some fish that upset his stomach. A few bouts of diarrhea. That was over the course of the year prior to diagnosis.

He was feeling some back pain. But then he’d ridden bikes all his life and had had a few wrecks. Had worked construction as a young man and had some back issues from that. Was in a desk job and had to commute so thought he wasn’t getting enough back strengthening exercises.

What got his attention: Went to dr for the worsening allergies in mid-August and was diagnosed with pneumonia. Blood tests showed nothing to be concerned about. One week later his stomach blew up like a balloon — extreme ascites. That was the beginning of all the ABC tests. The tests continued for four weeks, including at MD Anderson with Dr. Javle.

Biopsy turned up tumors on the liver, Catscan showed a small spot on his lung, other tests — mets throughout the peritoneal fluid and cavity. He was diagnosed Aug. 26 and died Oct. 24.

In hindsight, I wonder if these events individually were signs of the cancer, or if they were, some or all of them, individual illness events like all of us have now and again. Or has the cancer been there since the time I met him in 1975 when he got what we thought was food poisoning in the college dorm cafeteria from some ham that he ate?

How do we explain cases like the 12 year old boy in California who recently died of the disease?

From the variety of all our experiences, I guess what we do know is that more medical knowledge is needed. As others have said, it’s a sneaky cancer, until it smacks us over the head. I hope and pray for a screen someday to save lives. For now, I am grateful for this forum because sharing information will lead, I believe, to answers.

Wishing each and every one of you a good day. My thoughts and prayers go out to all!
Love,
Margaret

Hi Olga,
I’m so sorry. Having been where you are, I know that it’s so difficult to even believe this is happening — thus the feeling it’s a nightmare from which you will awaken. This kind of news can leave a person in terrified, shock-filled pain. Take it a step at a time, a day at a time, a moment at a time. Being on this site and getting information from so many people experienced in this fight is the best thing you can do — so take some solace and comfort and strength from that.
Come here as often and whenever needed. Ask whatever questions you have. This is a family that shares its knowledge and then backs it up with caring and kindness and support. Again, I’m sorry, there is no rhyme or reason or fairness. But you are not alone.
Much love,
Margaret

Thank you. That’s helpful.

I’ve been wondering how this relates to the Patient Registry being organized by the CC Foundation and the Mayo Clinic:

http://vimeo.com/36511521

Should we be contributing biopsy material? Hope that isn’t a stupid question, but I know that if there was some way in which my husband’s cc ordeal could contribute in some way to the greater good, he’d want me to follow through and see that it is done.

My husband died in October. His father died this March. My father-in-law’s family did have some history of liver cancer. I’m wondering if I the Patient Registry, or some registry, would want genetic material from both of them, since my father in law also had a lung biopsy for lung cancer.

Thank you,
Margaret

I too wonder about heredity.

My husband died in October of cc after diagnosis two months earlier. When he learned his diagnosis, his first words were “I guess I inherited my mother’s genes.”

True, his mom had an unidentified cancer, and had a history of colitis. Her mother died of cancer. And her grandmother died of cancer. None of those were cc or liver. But on his father’s side there were a couple incidents of liver cancer (a great grandfather, and a cousin).

That said, my husband comes from a farm family, his early years were spent in a town with a steel foundry, he never ate raw fish or hardly any fish at all, but he did have an x-ray as a small child and I always wonder if it wasn’t with Thorotrast, which some say is linked to cc. He was a photographer and worked with photo-chemicals for a couple decades, but he was always extremely careful with chemicals and other known carcinogens. Never drank or smoked. Ate a pretty healthy diet, other than Coca-Cola and the occasional fast-food burger.

That said, I recently read a study that did a meta-analysis on all the suspected risk factors for cc, and other than the liver fluke in Asia, the conclusion was that in the western world the cause is simply not known.

This makes sense to me when I think of the recent death of a 12-year-old boy from cc.

My personal feeling is that it’s a total crap shoot to try and figure out why — at this point it seems a mystery, but hopefully with research we will learn more.
Margaret

Horses,

I’m so sorry.

I posted to another thread my experience with my husband’s ascites (bloated stomach from fluid buildup caused by the tumor) and thought I’d share it here too.

His doctors ordered the fluid drained, but took too much at once, upsetting the balance of chemicals/electrolytes in his body and he wound up with acute renal failure where he’d never had kidney problems before.

Because of that, he was not able to take the same regimen of chemo, because one of the meds (can’t remember which one of the gem/cis cocktail) stresses the kidneys and that would have exacerbated his kidney problem. The doctors from then on had to work hard to avoid kidney failure, including a trip to the ER brought on by vomiting and weakness.

From then on, the acute renal failure severely limited what my husband could eat, and he was already able to eat only limited items. It became a huge issue for us, trying to decide whether to drain or if he should put up with the discomfort.

Glad you have hospice in place to help you.
Love,
Margaret

Mary I know it’s been last fall since you wrote this post, but I’m reading it for the first time today and it just so captures in many ways the way that I feel. My husband also loved life and lived it to the fullest, even though he’d had a number of sorrows in his life. I feel guilty that I now don’t have that same passion for living, but I’m trying! He fought so hard to live, that I feel I must also be passionate about living if for no other reason than to respect his struggle.
Your description of one day getting to see your husband again is so touching. I look forward to the same kind of encounter with my John. Oh that will be a wonderful day!!!!!!
Thanks for the post,
Margaret