caroline-stoufer

Dear Mike-

I am heart-broken to hear about your wife.

I don’t know of any charities or research organizations, but this is a good question. I would check with the American Cancer Society or the people at the Sorafenib trial – Southwest Oncology Group to see if they can use any assistance. I have thought about asking people to donate to the American Cancer Society when my time comes, because we have used them to get free lodging for traveling to doctors, as we are in a remote area.

Again, I am so sorry,
Caroline Stoufer

Susan-

You go, girl!

Both of my parents have passed away. When my father died, I went through a major mid-life crisis. I ultimately left my husband in an amicable divorce after examining what I really wanted in life. My mid-life crisis was one of the best things that ever happened to me! My ex and I are both remarried to people to whom we are much better suited. My ex seemed to have more respect for me after I left him than when we were married. He said he admired my strength to address our issues and get on with life, and I think he was relieved that I spoke (and he didn’t have to be the one to do so.)

My mother died in 2000 after a long decline in health, and she went in a peaceful fashion. Again, I re-evaluated my life and left my job as City Treasurer here which was quite stressful. It was a great experience, but I have no regrets for leaving. I took another job in government accouting which was way worse, but then an opportunity to buy the local bookstore fell out of heaven into our laps, and it all worked out. You don’t get rich selling books, but it is a lot more fun than governmental accounting.

So I think it’s great that you are spending more time with your mother and considering your options. I hope your mother is doing as well as can be expected. I suspect you’ll come to really cherish this time you are spending with her.

I’m so sorry we all have to go through this, but communicating on this website is a great help to me, so thank you for listening.

My thoughts are with you and your Mum,
-Caroline

Dear Jules & Patricia-

My oncologist is not that keen on chemo, either. My surgeon, as well, told me that the response rate is only 35% at most, but then again, someone has to be in that 35%. As chemo is my back-up plan, I’m anxious to hear other’s experiences, but I’m not that crazy about going through it. Jules, I think your father really needs to see that cc specialist in London, because he may know much more than just a general oncologist. He may be more familiar with the subtleties of the various chemo drugs and using them in combination.

By the way, I had a couple of English ladies in my bookstore yesterday who said good things about Marsden. Also, I have a friend visiting from Denver whose friend Martha loved her oncologist and was very disappointed when he left the Denver area to come to the western slope of Colorado, my side of the state. Turns out I have her friend’s oncologist.

Patricia, have you heard anything about glutathione? I was supposed to start on it, but postponed it when I applied for the clinical trial for sorafenib. (I haven’t received final approval, but I was told this week that I have been accepted. And I got great news yesterday that my insurance company will pay for tests associated with being in the clinical trial.) I also take other supplements and was on large doses of vitamin C, but my oncologist said the vitamin C may actually promote tumor growth in that it removes the waste of tumors and makes them grow more quickly. Have you heard anything about that? I’m going to ask the clinical trial people if it’s okay if I do the glutathione while on the sorafenib. Glutathione is supposed to very beneficial for the liver.

As for me, I’m feeling good and have lots to engage me, although I do get tired in the evening. Very busy weekend. Another set of friends coming in today to cross-country ski. It’s been snowing cupcakes so they will have great conditions. I have to work mornings in the bookstore and have my oldies radio show tomorrow afternoon. I’ll think of you when I play some British invasion music. We are hosting a couples book club Sunday night, so I must clean my house. I have been practicing the flute and pennywhistle to perform some Celtic music next weekend for St. Patrick’s Day. Our band is not so good, but up here in our little hamlet in the mountains, no one is that particular. They just want an excuse to drink green beer, eat corned beef and cabbage, sing some drinking songs, and do a jig. But the big thing coming up for me is that we’ll be driving to Dodge City, Kansas next week so I can start on the sorafenib. Keep your fingers that the drug works for me.

Gotta go,
Caroline

Dear Susan-

I am glad to hear that you took some time off to spend with your mother. I have cc and I don’t know how long I have. I had my liver resected last November, and already the suckers are growing back. My next step is to get into a clinical trial for sorafenib and should find out next week if I will be accepted.

I actually have two friends coming to town this weekend to see me. One of them would probably be coming anyway as she is coming to cross-country ski. But another one is coming out of her way, and I know it’s because we both realize that I may not have that much time left. It is a little upsetting to admit this, but I have to be realistic about what may lie ahead. So, I am contacting lots of friends and relatives so I can get some last visits in while I’m in good health. I’m sure your mother will want to spend as much time as she can with you. I don’t want any of my loved ones to jeopardize their work situation, finances, or health for me (my sisters each have offered to donate part of their livers to me), but I’m sure it is invaluable to your mum to see you as much as she can.

Long before cancer became an issue for me, I had two older friends that lived in the Dallas area that had cancer, so I flew down to see each of them over a weekend. I had just started a new job with a strict boss and had no time off, and as luck would have it, my flight got cancelled out of Dallas. I had to miss a day of work, but I stayed late several nights and made it up and my boss got over it. She later left and asked me to apply for her job, so apparently, it didn’t affect her opinion of me in the long run. As both of my friends died within the year, I was so glad I made the trip to see them. Each one was almost like a second parent to me.

Very best of luck to you and your Mum. Seeing you will do her good I’m sure. I don’t have my own children, but each time I see my sisters or stepson, it feels so good.

-Caroline

Hans-

Thank you for your reply. Good luck with your other treatment. I’ll be anxious to hear how it goes as I may be doing that if the sorafenib doesn’t work.

-Caroline

I have spoken to a nutritionist and an integrative medicine physician. They both recommended eating organic. It’s more critical that certain things be organic than others. On this website, there’s a list of the fruits & veggies you should try to eat organic and a list of those that it’s not as big of deal.

The nutritionist recommended a lot of sensible things – limit sugars (which I’ve heard feed cancer), eat fiber, eat lots of fruits & vegetables, try to eat the whole fruit, not drink the juice. The more you can eat fruits and veggies in the raw state, the better. Flax seeds are good for you which you can grind up and sprinkle on cereal or other foods. (I look for frozen waffles with flax seeds at the health food store.) The darker the fruit/veg the better – such as the darkest blue blueberries, the reddest raspberries, yams, deep green lettuces, red bell peppers. Avoid red meat and try to eat organic meat.

My nutritionist told me about a website that I will look up and put on here.

The integrative medicine doctor said to limit dairy and to avoid most soy products unless organic. She said so much soy grown in America is done so with tons of pesticides. She also said berries are the best, and buy organic. Sometimes I buy them frozen. Further, she said to limit fats and eliminate altogether trans fats which now have to be listed on the nutritional food labels.

Dear Hans-

I am new to this website. I am hoping to start the sorafenib trial on March 16th. I have to travel to Dodge City, Kansas which is about nine hours from where I live which is Ouray, Colorado in the southwest part of the state.

I had my liver resected on November 30th. They found cancer in one of nine lymph nodes sampled, so the doctors told me it could come back. At my last set of scans, I had 3 or 4 new little tumors in my liver. My oncologist didn’t put me on chemo after surgery. I think he knew the cancer could come back quickly and wanted me to be able to get into a clinical trial.

Are you back on the medication and how is it going? I’ll let you know more after I get started.

-Caroline Stoufer