more pictures

Pics from vacation in Wisconsin

Here are some pictures from my vacation with my family in Northern Wisconsin.

Catching Up

It's been awhile since my last post. That's because things are at a standstill. I'm no longer taking any treatment. No chemo, no pills. And I won't be taking anything until December 2nd when I have another CT scan, and the 4th when I will review that scan and have blood tests.

Seems that whatever is going on with me is Not a rapidly growing cancer. Nothing has really changed since I was diagnosed back in August 1 2007. Seems strange, when at that time they told me I was Stage 4 terminal, non-operable, cancer in my liver. But,,,,, guess what? I'm still here.

I've not had any Xeloda, or any treatment for a few weeks now, and my body is definitely detoxing. I'm sleeping like crazy! I don't "feel" exhausted, but if I dare rest my head, I'm asleep. My skin is also going nuts. I itch. My skin has pretty much pealed a layer. My eating patterns are disrupted. I am craving sugar. Even if I eat sugar, I have no energy. I've been working about 20 hrs/week, and am exhausted when I come home. I nap. Then I go to bed and sleep. Weekends are mostly slept through. It's weird.

My sister has been going through crises and she didn't tell me until it was defined, at least somewhat. They found a new spot on her lung and went crazy. It was a new thing, looked like cancer. If she'd metastasized from her breast to lung it would really be bad news. Fortunately they say now that it's not cancer. She had a lung biopsy that sounds hellish. They then tested her for TB, so far, not that. More tests, some which she'll find out about on Monday. God Damm!! She shouldn't have to go through this and I'm so unhappy that she went through a weekend of thinking she'd metastasized and didn't tell me! I get why she didn't but I still feel bad.

If you can't go through cancer with your sister who also has cancer, who the hell can you share it with?

We've found a neet thing tho. We are both on Skype and have video cameras. It's so fun to SEE JB while we chat! Everyone should do this! Other than buying the camera (her's came with her new laptop, I bought one) it's FREE! What a treat!

Life otherwise goes on. I'm trying to figure out what to do about Thanksgiving... I'd love to go home but it's not really in the cards. For Christmas I'm going to Chicago and staying with my daughter, Tara, I can hardly wait for that! I bought my ticket last July, when I still thought that I might be in hospital by then, maybe dead. It was such a leap of faith! But here we are almost to the middle of November and I'm so fine! What a gift! Until you have really believed that you have not long for this world you cannot imagine what it feels like to think that you will be around next week. Trust me on this one.

The only things I think about these days is my family. Tara is the biggest, of course, but so are my brother and sisters. It breaks my heart that my youngest sister, Susan, is not "with" me. She's only a few hours away, yet she doesn't talk to me. She, i have to say it, ripped me off this summer. I'm unhappy about that and I wish so much that she'd talk to me about it, but she doesn't . I did finally get a generic email when she moved to Bisby, AZ, and one or two more, but so far, she is apparently in denial. She won't talk to me. We've not talked since June, when I let her live in my house when I moved to my new apt. Double rent thing... She has no clue what's been going on with me, or Janel, I gather, since then and apparently doesn't care. She wrote me in an email that I could "tell" her what's going on, but didn't ask any questions. As far as she knows, I could be on death's door. Last June I was thinking about my funeral! I know many people have family issues like this, but to me, it is the most hurtful thing I can imagine. Apparently she just doesn't care.

I know she has her own health issues, but the point isn't how self-involved you are, it's what you feel about others. I wrote her an email, talking about how hurt and disappointed I was. I said "they" and "You guys" to soften it a bit, but was talking about Sue specifically, She wrote back sort of excusing the others _ Janel has cancer after all --- but obviously missed the point. Broke my heart and to this day I've not responded. How can I tell her that SHE is breaking my heart when apparently she doesn't have a clue? I dunno.

Family stuff, I guess. Totally unbelievable how much it hurts.

Back to "Real" Life-

I'm back from my vacation in Minnesota and Wisconsin, back to real life! Sigh. It was SO wonderful to be at a cabin in the Wisconsin north woods! My sister, brother, sister-in-law and their two adult children all went for a long weekend at a friend of my sister's cabin.

The place itself was pretty basic - actually partially under re-construction, but it filled our needs and had a great deck and view of a small lake. Jessica and Jason got fishing licenses and spent time catching (and mostly releasing) fish to all of our enjoyment. We mainly just "hung out". Everyone had a book or two to read while lounging on the deck, Ken, my brother built fires and we even made S'mores. Wow, are they sweet! but delish! The full moon bouncing off the calm lake water was beautiful! And I GOT TO SWIM IN THE LAKE!!!!!!! Yes! Another thing from my "list".

The rest of the week I was there I spent with my sister, Janel, who, as I've mentioned, is also going through cancer treatment. We compared notes a lot! This is so good to be able to do! By sharing stories I at least discovered how many "little" things that I experience, she has also. For example, I thought that the food aversions they warned about on chemo would be some big deal thing. I didn't realize that the smaller, "oh ick" feelings and blah, don't know what to eat stuff is part of the same deal. When you live alone, you don't find many opportunities to share the "small stuff" that goes on every day with chemo and cancer. I'll have some pictures soon, I hope!

Here's a picture of Janel wearing my purple wig - from her last visit here:
\
You can see how we were raised as twins as children - there's ony 18 months between us!

My niece and nephew were great to spend some time with too. They are such great people! I really relished having some time to just sit around and talk about "stuff" and get to know them as adults. Same for everyone, really. Everything was so relaxed and casual, it was just really special to have that time to get re-acquainted and bond a little! Thanks guys!

Now that I'm home, I'm stressing a bit about the PET/CT scan I'm having on Thursday. My Oncologist appointment is Sept 4th, when I'll find out the results, but just doing another PET scan gives me the willies. I cringe at the thought of being in that tube again! EWWWWIEEE!

We're hoping to find out that the changing colors/shades inside some of my tumors means that the cells are dying inside. They have not shrunk, but it would be a miracle if the chemo is killing the cells anyway! My Onc's assistant also confirmed that they really don't know for sure what kind of cancer I have. (I didn't think so!) She told me that perhaps IF the biggest one on my left side is still really active, that they might consider another biopsy. I think I would really like this! However, I also think that the asst. is much more enthusiastic about investigation than my actual Oncologist is. I could be wrong, but she was excited when I told her about Janel's triple-negative breast cancer and thought they might do some genetic testing. Dr. Dragovich didn't, however, apparently because it wouldn't affect my treatment in any case. Oh well. Another thing he probably takes more to heart is that my Medicaid probably would refuse to pay for it.

She did stress that I make sure to tell my other family members (especially my niece and nephew) to be diligent about their testing and preventative stuff, which I did while there. She said that a genetic link was awfully likely given that both JB and I have cancer so "young" (under 60yrs old). Gee! we're Young in the cancer world I guess.

I didn't get to see my therapist this week, bummer! But she was out ill. I'm not going to be able to see her until Sept 4th either - a LONG time since our last appt! I had to meet with the "pill person" this week too - the one who prescribes my anti-depressants. Turns out she's left the clinic I go to, so I had to tell my whole story to a new guy. He wants me to add a small amount of Zoloft to my Wellbutrin. He explained that it hits a different area and might help with my low feelings. We'll see.

Going back to work was hard. I felt so out of it, though by next week I'm sure I'll be feeling back in the swim. Just getting back into a routine is depressing. Thank god I love the people I work with! I'm even getting a raise next month - my three year anniversary! That just blows me away - It's been a year of cancer, three years of a job and two months in my new apt. Time flies!

Next I'm looking forward to spending Christmas with my daughter in Chicago. Handling snow and cold weather ought to be a trip! Last Xmas she was in LA so we had sun! She's talking about coming out here, maybe in October, which would be great - I can't afford more travel - both because of $$$ and keeping my job. I'd love it if she came out here, especially now that I have a place to live that is "decent' and air-conditioned!

Enough for now, I'm burnin' daylight!

Living with Stage 4 Cancer

I found this article posted on a new website that I'm very interested in and excited about. It's called http://www.livingwithstageiv.com/

It is presented as a Guide for friends and family, it seems to me it's also a tip sheet for survivors in ways to stand up for their own feelings.

GUIDE FOR FRIENDS AND FAMILY

If I should lose my hair because of my treatments,
PLEASE DON’T say “It’s only hair” or “But you have
such a beautiful face”. My hair is a part of my identity,
my sexuality, my feelings of who I am as a woman. It’s
a part of me.

PLEASE DO say “I’m so sorry that you have to go through
this”, or I can’t know how you’re feeling, but I’m here to
listen if you need me.”

REMEMBER I am not only losing my hair, I’m also afraid
and fighting for my life. My hair is just the outside expression of what is going on inside my body,
and I’m reminded of it every time I look in a mirror.

If I should express anger or depression, PLEASE DON’T say “You have to stay positive” or “Let’s talk about the good things in your life”. Accept that I ‘m afraid, lonely, anxious and in pain. I NEED to let these feelings out.

PLEASE DO show me you are willing to listen. Don’t feel you have to “fix it”. Don’t worry about saying the “right” thing, it’s ok to tell me you don’t know what to say .

REMEMBER no matter how supportive you are, my feelings don’t disappear when I hang up the phone. Call again tomorrow to see how I’m doing, or drop a card in the mail to say you’re thinking of me.

If I say I’m tired, PLEASE DON’T say “Who isn’t tired?” The tiredness I feel from my treatments goes beyond fatigue.

PLEASE DO ask “How can I help?” or “I made an extra tray of baked ziti? When can I drop it off”.

REMEMBER I still have to do the same housecleaning, grocery shopping, laundry, that you do, while being physically, emotionally, and financially exhausted.

If I need to talk about the possibility of my own death, PLEASE DON’T say “Stop talking like that” or “Everyone’s going to die. I could get hit by a bus tomorrow”. The only way you can compare getting hit by a bus and going through treatments for cancer is if when the bus hit you, it dragged you around for five years before you died.

PLEASE DO listen to my fears. Just listen and let me know you’re there for me. I know how important is is to be positive, but sometimes I just need to cry, scream and talk about how unfair life is.

REMEMBER, I am on chemicals that are poisons. My hormones and emotions, my body, my plans for the future, my activity level, my finances and friendships have all been affected by cancer.

PLEASE DON’T tell me cancer is a blessing or a gift. If cancer were a gift, I would have asked for the receipt a long time ago, and returned it! Many gifts and blessings in life come from experience, but please don’t give cancer credit for that.

Cancer is the challenge.
Strength, courage, hope and determination are the blessings.
Your friendship, support and understanding are the gifts.

REMEMBER above all else, cancer has not only affected me. It has affected
you, too. And just as I have asked you to be there for me, I promise to do what I can to be there for you

Made it throught the first YEAR!

It's really hard to believe that this cancer "thing" has been going on for a full year now!

To update me, I was diagnosed a year ago (Aug 1, 2007) with cancer in my liver of unknown origin or Primary. Since then I've had several chemo cocktails, (Gemcitibine, Carboplatin, Taxol, etc.), 14 weeks "off" and since Feb 08 have been on Xeloda - oral chemo, 2000mgs/2x/day. About that same time they re-evaluated my liver biopsy and now their "best guess" is that I have bile-duct cancer.

I have no tumors showing in my bile duct, only in my liver - no nodes. So I am still a bit of a mystery to them.

At first I had a lung cancer specialist, as it was the best guess at the time. Recently I've moved to a GI cancer specialist. The first thing he did was send me to a surgeon for an eval. The surgeon said I am not a surgical candidate too (everyone has said that) because I have too many tumors all throughout my liver. I found out that not only do I have the five they keep measuring with CTs, I also have "many" little ones that they don't measure. Shock and Awe!

He also said that he does not see me as a candidate for radiation because of the number of tumors. He said he'd not want to do radiation unless he had a 95% chance of getting it all, and in my case, that's unlikely.

He DID tell me the same thing as the Dr in Pittsburgh who I sent my records to. He said that IF the Xeloda stops working, that he'd consider chemo embolization. So... Finally I have that all confirmed. That's a quick recap of this past year.

Now for the good news! I just had another CT scan this week and it (again) showed no change. BUT the asst. showed me my scans and pointed out how before the tumors looked solid and firm, while now some look more fuzzy - more mottled in the interior and they suspect that it MIGHT be that some of the cancer cells are dying inside. They aren't shrinking, but they think it's worth a PET/CT scan to see how active they all are. This will be done Sept 4th.

Meanwhile I get a month OFF of chemo! YEA! Since I am going back to Minnesota next week to see my sister (who is in chemo and rad for breast cancer) and my brother and his family. My sis and I are going to a cabin in Wisconsin and hang out - I can't wait! I'm in AZ and here there is no lakes or "swimmin' holes" to jump into, and I miss that a lot! The others are coming too for the weekend. Hopefully it won't rain.

Anyway, back to my cancer. They know it is an adenocarcinoma, but really are not 100% sure what kind. They told me that if the biggest one in my left lobe is still very active, they might consider taking another biopsy on that one this time and see if it tells them anything more. My first prognosis when it was unknown origin was 3-11 months, and I just beat that but if they knew what it really is, they might be able to target treatment better. Is ANYone out there in a similar situation? I feel pretty alone with this thing, I'll tell ya!

I asked my doc's asst. if all this meant that I might actually live for a few more years? And she wouldn't say, but she'd just given me an example of someone they'd had there with a similar liver mets (only in liver no where else) and she went for 2.5 yrs without chemo! I feel really weird about all of this. To go from thinking I was going to fall apart any day to now thinking maybe not! I booked a flight to Chicago for Christmas to see my daughter and it really felt strange to make a plan 6 months ahead! I haven't dared do anything like that all of this year of cancer.

I get that it's best to live in the day, but "regular" people make future plans, and it feels good to do that, but I DID buy cancellation insurance, just in case.

I'm not sick now except for extreme fatigue when I'm taking the Xeloda (2wks on, 1 wk off) but not much pain, no loss of appetite (I should - I'm GAINING weight!) and thank God I'm not experiencing any of the many awful things I could be suffering. They told me this could change any time, so I feel like I'm holding my breath. Hoping I can breathe again soon! :)

Just how big is it?

I visited a site today by a guy in his 40's who has pancreatic cancer. I spent an hour or more following his posts. Since pancreatic cancer is sort of similar to bile duct (rare, deadly, hard to treat) I was fascinated by his perspective and experiences. One thing he posted was a graphic of relative sizes of tumors - ie: Just how big are they?


I've had people ask me how big a tumor(s) do I have and haven't known how to describe them since most of us "americans" don't know a centimeter from a caterpillar.

On my original CT scan I had 5 tumors in my liver:
3.2 x 3.8 cm
3.1x3.8 cm
3.0x3.8 cm
2.6x3.9 cm
and
3.0x3.1 cm

So all of them are about midway between the size of a peanut and the size of a walnut.
Interesting. Added together it sounds awful - 15 x 19 cm or so? YUCK! What's that, about the size of a medium orange?

Of course I have numerous (we don't know How numerous) other smaller masses that they don't measure, that are apparently smaller than 2 cm, but that's another story.

I also liked the title of his Blog - I'm not dead yet! (see my list on the side for a link.) I've been tempted to respond with that phrase a few times when people have asked me how I'm doing, but I don't want to give anyone a heart attack! :)

He has a video clip of the Monty Python segment where that phrase is used. If I can figure out how to borrow it, I'll post it here - it's hysterical!

Regaining Perspective

Wow, I was blown away today to see that someone commented on my post! Thank you! Your note was so caring and concerned that I just busted out in some tears! Some good ones.

Despite how low I was feeling my last post, I do not think that I am getting "substandard care" or anything like that. I think my situation just falls into a lump where the most likely thing is progression (albeit slower than they thought before, thank God!).

I have sought for other opinions and both agreed that I am on the best course. I just don't have to like it! :) And I am going to a well respected cancer center, so in my more rational moments, I think I'm being given good care. I DO think that people who are famous or wealthy (or with excellent insurance) are often offered care opportunities that others of us are not. That's my opinion although I doubt if I could really prove it! Be that as it may, I've GOT insurance, I am GETTING treatment, and so far I'm still healthy (as can be) and functioning fine.

So thank you Anonymous poster, you helped me get back some perspective. I hope so much for good news for your father. I hated having "unknown primary" and still am not trusting entirely that they "know" that I have bile duct cancer. Too many "if's" in their comments.

I've also started seeing a therapist to work on some of the "stuff" that is coming up concerning having an incurable cancer and a lousy prognosis. I think it will do some good. I met with her this week and we talked about anger. Whew! That was pretty heavy duty. She told me that lots of emotions are bound to come up, that things that happened in the past may seem to have other imports now, and that I probably have many regrets, resentments, feelings about things that have happened that I have the "opportunity" now to re-assess and hopefully process and let go.
I sure do! We talked about my ex-husband and the effect he's had on my relationship with my daughter and I thought I was going to burst! It was good to get an outsider's perspective and support. Hard to do, but good. I want to get to a peaceful place about myself and all the mistakes I've made in my life and all the good things and things not done - all of that. The only way I can see to do that is to open myself up and take a look.

This cancer thing has a big effect - physically, of course, and emotionally, philosophically, socially, every way. Mostly I try not to think about it and go about day to day, but I am beginning to realize that if I pretend that it's not causing changes in me, and around me, I will miss some important stuff.

I'm off for my annual physical. Seems weird to have to go see my Primary Dr. to get my blood tests for hypothyroidism (been taking thyroid since my mid 30's!) but health is pretty compartmentalized. Regular health stuff still happens!

Cancer Sucks

Ok, Here's what I think.
I think that I have so many small tumors in my liver that they (the doctors) don't think that there is anything to do.

I think that they feel that the best they can do is wait until I have symptoms that they can deal with and then deal with those in a way that lets me suffer as little as possible as I die. My last appt was with my oncologist's assistant and she said that she thought I should get pain pills stronger than I'd had. I said no. She didn't understand that I don't want to just snooze through.

I think they have absolutely no thought to saving me or increasing my life span one bit.
I think they have totally written me off and their only interest is if I somehow continue to "beat the odds". But now they call my cancer "indolent' so that puts me in some space where they won't predict how long it will take to get to some terminal type of situation.
I think this sucks.

Apparently since I don't have major bucks or insurance, they are not about to try anything weird or experimental. I am just another junk heap cancer "victim" that they tell themselves they couldn't save anyway.

I feel like I've been written off and that not one dot of energy is going to go into me other than some sort of maintainance until the cancer grows so extensive that they then can say... put her in hospice, she doesn't have long to live.

I read about all of these people with various sorts of cancer who have been given treatments and surgeries and you name it, even though they think it will only come back, as it tends to do. But but for me "nothing can be done". I can get chemo, until the chemo itself kills me. but no one has anything to suggest, no matter how radical or experimental or whatever, to give me a shot. I've been told that if my measured tumors grow more, they might consider chemo embolization, but since they only measure a few of the biggest ones, who knows when that will happen.

I don't know how to fight this. I don't know what to do. I think I'm supposed to just take it. Ya, I'm angry, Ya, I'm pissed off. I wish I had someone somewhere who would say "let's fight this" and have some suggestion as to what to do.

I feel very alone.

I am alone. I don't have anyone who will or can step up and fight for me. Janel would have, and has, but now she has cancer too and has to do her own battles. Wouldn't ya know. I'd be there for her, too, but I'm doing the same thing.

I read all about how hard it is on the caretakers, but I wouldn't know. What happens to those cancer people who don't have caretakers?

Sorry I sound so negative. But the truth is we all feel negative at some point and it's only the myth that we somehow are such strong fighters and all the other hero bull shit that keeps us from voicing some of the more scary and negative stuff.

Well, since no one is going to hear it anyway, I guess I can say it for all. THIS SUCKS!

What do you do with a slow growing tumor?

I've not posted for a while despite the fact that a lot has happened, the bottom line is not a lot has changed about my cancer itself.

I had some growth back in February, the first time that showed after 14 weeks of no treatment. They put me on Xeloda then and I've been on it since. The one cat scan showed no growth so they said to continue. I'm to have another in July to see what's up. My new oncologist said that if it shows no growth again, we may be able to take a "vacation" in August. Whoopie!

I have a new Oncologist. This one, Dr. Tom Dragovich is a GI cancer specialist. Seemed to me that I should be seeing someone who specializes in the type of cancer it seems that I have. Unfortunately, I am less certain all the time exactly what cancer type I actually have!

The bottom line, at least for this moment is that it seems I might have a better prognosis than I had almost a year ago. Since I have a sluggish, passive, lazy, "indolent"type cancer, hopefully I can assume that that will continue for a while and I can make a plan that is further out than a couple of months. I guess.

Other than the little change in the cancer itself, a lot has been happening. I decided that if I have to deal with this stuff, I'd better get some "ducks in a row" as they say. So, I've moved to an apartment with air conditioning and taken a 9 month lease, I changed doctors, I planned a vacation to Wisconsin in August, I finally got to see a therapist and set up some counseling, I got my financing in order, as much as I can, and as of today, 99% of my stuff is moved to my new place which is only 2.5 miles from work.

I think that's a hell of a lot!

I have a lot less energy than I used to, I think my skin is getting slack, I'm sicker on these pills than I was at first, and, what? I don't know... I'm doing the best I can with the hand I've been dealt.

My new therapist, Krishna (gawd how 60's!) is willing to work with me on the things I think are important. She wants me to journal, and thinks that blogging isn't quite as "real" and I sort of agree, but I can't seem to get back into actual writing, so for now, this is it. I have to get over the idea that my nearest and dearest might read this. I am so into self-censoring to make sure they will still love me. We've had two meetings now. One meet and greet, and the one last week to make a plan. The highlight was her asking me, in an awkward form, if I really really am dying and do I have to deal with that stuff. Ya.... I think so.

She's ok though, She has some moxy and doesn't cop out. That's a good thing. Now I have to try to get across that I'm so friggin verbal I can sell ice cubes to .... no I can't, but I am full of a lot of bullshit, so it's always a danger.

Writing. I love to write and I hate that I can't write. I guess if I have a goal before I die I want to write a book. That is so scary. I always wanted to write a science fiction book, sort of like Heinlein where it was in some future space, but about people. But I am so undisciplined. What could I acomplish that would make me feel like my life has been worthwhile? THAT is the question.

I've messed up and blown so many things. I think I had a blessed life and I've made it harder and harder for no good reason. I guess I'm not sure what to do about that at this point. What to let go, what to fix, if I can, what to strive for that I didn't. I don't know. But aren't we here to do something?

There’s no scripted way to handle cancer

I am so glad I saw this article in the New York Times this morning. I've been thinking the same thoughts and wondering how to communicate them ever since.... certainly ever since Janel found out she had breast cancer! It's just so true! It just feels so difficult to say you're NOT feeling well! I was wishing I could find some good way to tell her this. To say "I know" that it seems sort of like a requirement to be up-beat all the time.

I was FINALLY able to see a therapist the other day. I've been waiting 9 months since I had to change to another program when my insurance changed. First my case-worker "forgot" for a few months, then there was a "gatekeeper" interview and more waiting, but finally I had a first meeting last week. I have no idea how that's going to go, but at least it gives me an opportunity to be "mad, sad, glad, scared" with someone who isn't going to be hurt or upset by something I may be experiencing. I'm glad I made it to this point!

---

June 1, 2008

When Thumbs Up Is No Comfort

By JAN HOFFMAN

OVER the Memorial Day weekend, the actor Patrick Swayze, who is being treated for pancreatic cancer, made a pointedly public appearance at a Los Angeles Lakers game, looking strong-jawed and bright-eyed. He released a statement about his lively schedule and good response to therapy. Meanwhile, Senator Ted Kennedy, who had recently left Massachusetts General Hospital with a diagnosis of brain cancer, flashing crowds a thumbs up, competed in a sailing race. International headlines cheered, “Fight, Ted, Fight!”

As public figures are stricken with harrowing illness, the images of them as upbeat — think of the former White House spokesman Tony Snow, Elizabeth Edwards, the actress Farrah Fawcett — accompanied by stirring martial language, have almost become routine.

“Whether you’re a celebrity or an ordinary person, it’s obligatory, no matter how badly you’re feeling about it, to display optimism publicly,” said Dr. Barron H. Lerner, the author of “When Illness Goes Public.”

That optimism reassures anxious relatives, the public and doctors, regardless of whether it accurately reflects the patient’s emotional state. “If Ted Kennedy wanted to stick up his middle finger,” Dr. Lerner added, “that would be the more appropriate finger, but he’s doing what he is supposed to.”

Whether such images inspire patients, or reinforce unrealistic expectations that they, too, should maintain a game face, remains an open question, say doctors, social workers, family members and patients themselves.

Adam Lichtenstein, a founder of Voices Against Brain Cancer, a fund-raising and support organization, sees no down side to Mr. Kennedy’s composure. “It gives everyone else with his diagnosis a glimmer of hope,” said Mr. Lichtenstein, whose ebullient brother, Gary, was 24 when he died from a glioblastoma. “Patients think, ‘He’s fighting it, why can’t I?’ ”

But Rachel M. Schneider, a clinical social worker at Memorial Sloan-Kettering Cancer Center, said that while many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome.

“Hopefulness is real,” Ms. Schneider said. “But patients say, ‘I have to be positive, I can’t cry, I can’t let myself fall apart.’ And that is a burden.”

Certainly maintaining a game face is how many patients cap the eruption of terror and anxiety, in an effort to protect their loved ones and themselves. But not everyone is going to be brave, said Dr. Joseph J. Fins, chief of medical ethics at Weill Medical College of Cornell University. “We only hear about those who handle it well,” he said. “As a society we value the stoic but we don’t know what the stoicism hides.”

Although public figures promote enduring impressions of the stalwart, pumped-up spirit, he added, patients themselves often describe a more nuanced, evolving journey. When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, “Everything went dark, went blank,” he recalled. “I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, ‘How long do I have to live?’ ”

Faced with potentially harrowing repercussions from a biopsy, Mr. Kosinski, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. “I never felt brave or courageous,” Mr. Kosinski said. “I don’t know what that means. I was scared. I was the furthest you could be from courageous.”

That was 15 years ago. Mr. Kosinski, now 61, paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. “Some people in my group don’t want to hear the upbeat scenario,” he said. “The way they’re coping is completely the opposite because they feel they may not make it.”

It’s important for patients to realize that “there’s no scripted way to handle this,” Dr. Fins said. “They can write their own script based on their own narrative.

“If we fail to meet patients where their grief has taken them, we have sequestered them off,” he added. “Then patients and families talk about platitudes rather than what they’re really thinking.”

In the last 15 years, as patients have become more outspoken, a mushrooming amount of cancer narratives has legitimized a soulful range of responses to illness. The Internet teems with patients’ voices: communities gather to weep and wisecrack on sites like the uppity ChemoChicks or MyCancer, a National Public Radio blog by Leroy Sievers, a former television news producer .

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.

Richard Haimowitz, 62, a lawyer in Queens who was found to have pancreatic cancer in January 2007, thought of himself as a warrior, fighting with all available ammunition.

“The day of my last treatment, people congratulated me, but I felt blindsided by my reaction,” Mr. Haimowitz said. “I thought, ‘Oh my God, I have nothing left to fight with,’ and I felt angry that there was nothing left for me to do.” Statistics to the contrary, Mr. Haimowitz has had two clean scans, is back at work and takes spinning classes. As he soldiered through treatment, Mr. Haimowitz recalled, he did not fear death, even though he did not want to die. Many studies published in oncology and mental health journals have looked at whether attitude is a factor in survival or recurrence rates, a core belief in many cultures and faiths. Some studies say yes, others no. They all have their critics.

“The thumbs-up attitude is very important,” said Darren Latimer, 33, a banker in Chicago who had surgery for a malignant brain tumor in May 2005, and still receives chemotherapy. “You can be in the dumps very quickly in our business, the business of being sick. But can you fight your disease and not yourself?”

Certainly patients need psychic resolve to make difficult decisions, prepare for stark regimens and to push back against bleak prognoses. The evolutionary biologist at Harvard, Stephen Jay Gould, whose doctors told him that eight months was the median survival rate of patients with his diagnosis, abdominal mesothelioma, wrote: “Attitude clearly matters in fighting cancer.” In his 1985 essay, “The Median Isn’t the Message,” he described how he then closely studied those grim statistics to optimize his chances. He died from another form of cancer 20 years after the initial diagnosis.

Uneasy well-wishers, steeped in near-superstitious belief about positive mental attitude, can exacerbate anxiety. On Cancerblog.com and ChemoChick’s “Excuse Me?” sites, lists of tone-deaf remarks include, “If anyone can beat it, it’s you,” “You gotta think positively” and “Just look at Lance,” a reference to Lance Armstrong, the champion cyclist and a cancer survivor.

Brian Wickman, a manager at a luxury hotel in Manhattan, needed to reframe his loved ones’ language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on Mr. Wickman’s ankle because it was so rare and because, “no one wants to publish when all the subjects die.” A month later, Mr. Wickman, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.

His awestruck friends would say, “ ‘You’re so brave, I don’t know how you do it, you’re my inspiration.’ They would put me on a pedestal,” Mr. Wickman said. “That doesn’t allow me to be human and in pain, angry or depressed.”

HIS e-mail messages reveal a spirit of great equanimity and eloquence: Mr. Wickman, who now wears a prosthesis and has resumed athletic activities, will attend graduate school in the fall for a joint degree in social work and divinity.

But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. “This is not a call for pity responses,” he would add. “Just let me be where I am.”

Copyright 2008 The New York Times Company

Interesting Website, Interesting Lady!

I accidently found this website "The Assertive Patient" about a woman with cancer who supports actively advocating for yourself. I'm browsing it now, but I like what I've seen so far. Go Girl! :)

Cancer Survivor Day is Sunday June 1, 2008

I didn't know there was such a day! Thanks to http://www.ncsdf.org/

Celebrate National Cancer Survivors Day^® on Sunday, June 1, 2008

On Sunday, June 1, hundreds of communities throughout the United States, Canada, and other participating countries will observe the 21st annual National Cancer Survivors Day by hosting celebrations of life. NCSD events are filled with joy, camaraderie, hope, compassion, faith, and love. Cancer survivors are honored for their strength and courage, and the contributions of their families, friends, and healthcare providers are recognized.

The activities are as diversified as the towns and cities where the events are held and include parades, carnivals, races, art exhibits, ball games, contests, dances, inspirational programs, and more. Surviving cancer is an attitude about life and living each day to the fullest. NCSD helps call attention to the issues of cancer survivorship and will be commenced with greetings from President George W. Bush and the director of the National Cancer Institute.

A “survivor” is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life, according to the National Cancer Survivors Day Foundation, which reports that an estimated 12 million Americans are cancer survivors.

National Cancer Survivors Day 2008 marks the 21st anniversary of this celebration of life, and the Foundation is encouraging everyone to participate in their community’s event. To locate the one nearest you, check with your local cancer treatment center, American Cancer Society office, or contact the Foundation at (615) 794-3006 or info@ncsdf.org. National Cancer Survivors Day 2008 is being sponsored nationally by AstraZeneca, Coping magazine, Lilly Oncology, and R. A. Bloch Cancer Foundation.

About the National Cancer Survivors Day Foundation
The non-profit National Cancer Survivors Day Foundation supports hundreds of hospitals, support groups, and other cancer-related organizations that host National Cancer Survivors Day events in their communities, by providing free guidance, education, and networking. Its primary mission is to educate the public on the issues of cancer survivorship in order to better the quality of life for cancer survivors.

About Cancer Survivorship
As the world celebrates life on National Cancer Survivors Day, the accomplishments of modern science are evident in the ever-growing cancer survivor population. Addressing the poorly understood needs of these survivors is becoming a formidable challenge.

A cancer diagnosis can leave a host of problems in its wake. Physical, financial, and emotional hardships often persist after diagnosis and treatment. Survivors may face many challenges such as hindered access to cancer specialists and promising new treatments, inadequate insurance, financial hardships, employment problems, and psychological struggles. To improve the quality of life of cancer survivors, more resources, research, and survivor-friendly legislation is needed.

CONTACT: PAULA CHADWELL
PHONE: 615-791-3834
E-MAIL: PCHADWELL@NCSDF.ORG

Freedom to work????

NOTE: I wrote this before my trip but forgot to post it here. Will update this weekend.

Things have progressed since my last post. I found a funding source to get back on Medicaid (yea!) and am continuing the Xeloda chemo pills. My last CT scan showed no growth, so they decided this time to continue rather than stop the treatment. All the other times my CT scans came back negative, they'd stop that chemo and start something else, or stop everything. Not sure WHAT that is all about.

I have an appointment with Dr. Dragovich at the center. He's the GI specialist Oncologist I mentioned before - that I didn't know he existed, let alone at my own clinic. That won't be until June, but I'm very excited about it. My Oncologist and I seem to have come to an impasse.

I wrote up a bunch of questions for her my last appt. One of them being the triphasic CT scan that the surgeon in CA said he'd need to see to give me an opinion. Her response (through the nurse) was "if she wants a triphasic CT scan, have that Dr in California order it". Wow. The nurse DID tell me that my doc in fact did consult Dr. Dragovich when my CT scan showed growth (in FEB) evidently it was HIS suggestion to try Xeloda. Nice to know. sheesh!

The bad news is that my sister, who's been my main support, is having surgery today for Breast Cancer! She had had several biopsies over the years, always negative, but this time they found a lump. Very small, but aggressive, since it's showed up so fast, but then they are catching it early. Such twists! We're hoping for a clean lumectomy (sp?) and they plan on some radiation. The whole family is reeling from both of us getting cancer at practically the same time.

I'm going back to the Midwest next week. I extended my trip to visit my daughter in Chicago to also go to Minneapolis to visit my sister. I'm so looking forward to that! It's strange all of a sudden being a "caretaker" (as much as I can from 2000 miles) as well as trying to deal with my own issues by myself here in AZ.

I'm feeling ok. Some transitory pain in my middle, diharrea from the Xeloda, and it seems I'm getting fluid around my liver. It doesn't show up on the scan, I guess, but I've gained 15 pounds for some reason (besides eating a lot!) and I can FEEL my middle expanding! The nurse said I have a "little" fluid at my last check up last week, but let it go at that. I just had to buy new pants however! Anyone know much about this? She just said to watch my salt intake.

All in all I can't complain. They said my prognosis last August was 6-11 months, and we're at 9 months and I'm in good shape!

Possibility of Surgery for Bile Duct Cancer?

Ok, the letters got some reaction. My state senator actually emailed me back, several times!! Gotta love that, and besides the response, she also sent my letter to AHCCCS (medicaid) who called ME up! Her name is Paula Aboud, State Senator District 28, Tucson . NICE LADY!

When AHCCCS called, the woman explained some "in's and out's" of the spend down program and gave me some hope that this all might work out somehow and my medical expenses may get at least partially covered. We'll see! My advocate at the cancer center is in the process of getting appointments and billing timed as best as possible to cover as much as possible.

Last night I got ANOTHER call from someone from DES! I'm to call him back this morning, which I will as soon as it's office hours. (I'm still not sleeping much, so I've been up since 5am!) Didn't have a good night last night actually. This guy said that I should qualify for the "Freedom to Work" program of SS/DES. I've read up on it and am not sure. This whole thing about working and SSDI seems a slippery slope. I'll post more as soon as I hear what he has to say. In any case THEY ARE CALLING ME! That is the most shocking thing! When does a government service actually do that?

I also heard back last night from the Pittsburgh the UPMC Liver Cancer Center where I sent my CT scans and records. I called her back this morning. Dr Gamblin looked at my stuff and said it looked stable to him and as long as the systemic chemo was doing the job (keeping things from growing) he wouldn't change anything. I don't think he caught that the last scan showed some growth (to the doc's here anyway) and that they put me on Xeloda, but in any case it was a small amt of growth. He said though that I am NOT resectable. That's a major bit of news.

He said that if my tumors begin to grow again however, he'd recommend chemo embolization. That's where they temporarily block the blood flow to your liver and pump chemo stuff directly there, rather than throughout your entire body. I'll have to look this up again, but it's another procedure and often recommended for liver cancer. You can click on this Blog's title (Possibility of Surgery...) and it will take you to a link that has info on chemo embolization. It is at: http://www.radiologyinfo.org/en/info.cfm?pg=chemoembol&bhcp=1 He also said my bilirubin count has to be less than 3. So far that's the case for me. Bilirubin is measured by a blood test, and mine is around 1. People who have bile duct blockage (which I don't, thank god!) tend to have jaundice and high bilirubin counts because the bile is not getting out of the liver. It's these two things that usually indicate bile duct cancer, but mine's "intrahepatic" meaning it's all inside my liver and there is no blockage.

So that was the good news-bad news for this morning so far - and it's only 8am!

Write a Letter!

I've been very busy lately writing letters - to the newspaper, to my congresspeople in the state, all sorts!
Here's the latest version of the letter I'd been sending. Next post I'll tell you what happened!
LETTER

In August I was diagnosed with an incurable cancer. At the time it was CUP - cancer of unknown primary, now it’s emerged as bile-duct cancer. This is a rare and usually fatal disease. It is similar to Patrick Swayze's Pancreatic Cancer.

I'm 57 years old and otherwise in good health. I've now been through three different chemotherapies with no good effect so far.

My personal insurance was UPH, a program supported by the State to help small businesses insure their employees. Unfortunately the program overspent their "expectations" and beginning last year they started raising rates and cutting services to such an extent that when they changed again 9/1/07 I found that the insurance was no longer affordable for me. Instead of the zero co-pay the policy I bought had for diagnostic tests in September it was going to 20% co-pay. Just an FYI. The CT scans necessary to monitor the effect of chemo cost in the neighborhood of $4000 each and you need them frequently if your treatments don't go as hoped and they often don't with many cancers especially rare ones where there is not as much research being done.

I was told to apply for SSDI (Social Security Disability) and Medicaid. I easily qualified and so the first 6 months of my care were covered. However in February I began to receive disability - terrific as I was 3 months behind on rent working very few hours due to chemo side effects and was in a world of hurt. BUT then I found out that I no longer qualified for Medicaid (run by the states each with their own rules although it is basically a federal program). So as of April 1st I no longer have ANY medical coverage and no way to pay for the very expensive chemotherapy I am on.

Now the state HAD forseen this sort of problem. Even when you qualify for SSDI you have to wait an additional 2 years before you can receive MediCARE. So for two years you are on your own. Why. I don't know, but I was told it was one way that services were cut during a previous "crunch".

Arizona created a program for people like me who once they get disability make slightly too much to qualify for Medicaid. (To qualify as a single person for Medicaid you have to earn $867/month or less, for example) Not a lot.

Section 4733 of the Balanced Budget Act of 1997 (BBA) allows States to provide Medicaid coverage to working individuals with disabilities who because of their earnings cannot qualify for Medicaid under other Statutory provisions. (They can't have much in the way of assets left either.)

Section 4733 allows States to provide Medicaid coverage to these individuals by creating a new optional "categorically needy" eligibility group.

Arizona had this program and funded it in 2007 but quickly it outspent their (optimistic?) projections. Now there is a "waiting list" that is HUGE of people waiting for it to get re-funded. As am I.

The program is only designed to temporarily help people like me who have catastrophic problems are on disability but have to wait for Medicare. They pay a premium on a sliding scale based on income. I'd be HAPPY to do that!

Instead it's not being funded and I am in the devastating position of not being able to do anything about my rare cancer. I can't even get a second opinion! (AHCCCS turned me down on March 31st even though any and every resource (including ACS) tells you that if you have an unusual cancer if you have no cure offered or several other criteria that I meet you SHOULD get a second opinion!) It's probably another cost-saving measure. In my case, since there are possible surgical solutions only done at Mayo Clinic, (the 2nd opinion I was trying to get). I am facing the "incurable" part pretty dramatically right now. Surgery, if possible, is the only real cure.

There IS a "spend down" option left which in my case means that if I spend all but a few dollars ($347) of my disability payments for three months completely on medical bills Medicaid will pay any remaining bills for 3 months. My question is how do I live on the $347? I'm still able to earn working very part time despite the disabling effects of cancer treatment, at the moment. But that $480/month only adds $480/month to my spend-down. I'm working because otherwise I'd starve and/or be homeless. Is this how we want to treat cancer victims?
What do I do?

Remembering Matters: "Snow, Aldo" and Sparrow for President

Remembering Matters: "Snow, Aldo" and Sparrow for President

I love this poem! And this post!

Oh I forgot to mention, one of the tumors DID grow!

I just reviewed my later posts and realized that I did not explain why I am now taking the oral chemo. Xeloda. The last CT scan showed that one of the tumors in my liver grew a bit, so now, after waiting with baited breath for 14 weeks, I can exhale and start to deal with the denial I'd been nurturing.

Looks like it IS going to grow. Hopefully it will continue to amaze the medical profession with how SLOWLY it grows, but I am going to have to face this reality and somehow, some way come to terms with a short future. I cannot begin to explain what that is like. It's beyond my ability to write. While it may be a "lesson" in living in the NOW, it's like the phantom limb experience I think. Oops, I was just thinking about how I'd still like to learn Spanish. WHY BOTHER? Quick splash of cold water! What should I do this weekend? Next month? This summer... Should I move? It's weird. Trust me, you do NOT want to know. :)

Epiphytic Notions: A Miracle Enveloped in a Tragedy

Epiphytic Notions: A Miracle Enveloped in a Tragedy

second Opinion Not necessary

Got a letter today from my "insurance" company. In their infinite wisdom they have determined that even though I have a rare cancer diagnosis of "unknown primary" and recently an even rare-er diagnosis of bile duct cancer, that it really is not of any use to have me go see someplace that specializes in these rare sorts of cancers.

All you have to do is look up second opinions on the web and you will find that EVERY reliable cancer source tells you that a second opinion is not only your right, but a very necessary thing in many circumstances. The biggest circumstances are when you have a terminal cancer that doesn't have a cure recommendation and even more so if you have a rare cancer that not every place is expert in dealing with.

What's not rare about bile duct cancer? on top of Unknown primary? Both are considered rare, both are automatic disability qualifications, both are quickly fatal without treatment and both have many questionable therapies.

But, Pima Health Systems decided to refuse me a second opinion. Their reason:
"AHCCCS does not pay for second opinions unless you have a medical need for it. The notes we have from your doctor do not show that you have a medical need for this second opinion. Please talk to your doctor for help with this."

I'd been in almost daily contact with these folks, trying to get them all of the information they would only parcel out bit by bit. I was working so hard to get it approved before they cut off my insurance completely on April 1st. The letter, dated April 1st. denied any need. I guess even if they didn't pay for it, they believe that there is no use in getting a second opinion on a fatal short prognosis cancer. Heck, I'll be dead before I can effectively protest!

sittin here

You know, I'm sitting here, looking at what's been posted earlier, thinking thoughts, stressing, feeling feeling, whatever, and I don't know what the impulse is to share. I do and I don't. It's not like anyone really reads this shit. It's not like I can really talk about it anyway. It's like circling the drain. You can fight the whirlpool all you want. That's life. We all do it. Some of us just get to feel it a bit more specifically than others.

I'm going through emotional stuff now. I'm not suffering physically. Even this new chemo Xeloda pills seem to be ok. But I'm ANGRY. I'm feeling things. I'm aware of being STRESSED. I don't sleep. I'm tired and unhappy and feeling blue and I know it's nothing compared to really suffering, but I'm feeling that way anyway.

This money thing is a panic and a distraction. They can just cut off my health care! Zap. it's gone. Sorry. Stress city to figure out how to beat the system. Just what you need. I don't want to work, I need the money, I am punished if I make money. around and around.

This sucks.

gotta love the paperwork

I guess that didn't work so well.
I just got the final word that there will be no respite from cutting off my insurance.

Mayo is still waiting for an authorization and I found out this morning that it was held up because my primary had sent it on an "old" form. Supposedly they will all expedite things today/tomorrow? and I'm praying that Mayo will look at my stuff before the 31st and at least decide if they WANT to look at my stuff. We'll see.

check out www.cholangiocarcinoma.org

I've been mostly posting on a new website specifically for those with bile duct cancer. http://cholangiocarcinoma.org/punbb/viewtopic.php?pid=7082#p7082 is the page with most of my entries

Long time, lots of changes

Well it's been since December that I last posted. In terms of the cancer stuff, nothing much has happened. They see no growth, no shrinkage and are amazed. "Gee, seems like you have a very slow growth cancer". So they are doing nothing. First it was 6 weeks, then a CT scan. It again showed nothing. So they went 8 weeks. Had the CT scan last Thursday. My appointment to see what happened is this Thursday.

Such fun.
After the CT in January I met with my Oncologist with my sister. I asked her to come down from Minnesota to meet with my doc. I just felt it was going to be very important and I'd been realizing that I was intimidated by my Oncologist.

We worked for hours setting up questions and debating procedure and how to handle the meeting for best effect. Not to alienate the doc but to get some answers.

I don't think it went well. We did our best and the outcome sort of reassured both of us that she did, in fact, have our best interests at heart, but it still didn't really satisfy.

The upshot was we're going to wait another 8 weeks this time and then do another CT scan. She said (again) that they'd look again at my biopsy slides. Since this was an "incredibly slow growing" cancer, it made even her wonder.

Lots of in between stuff and I think the advocate at the center actually got it to happen, but they looked at the slides again and she consulted with a GI specialist who "thinks" it may be bile duct cancer.

Drama trauma

More about that later, cuz it's good to have a label, but bile duct cancer is just as bad, if not worse, than unknown.

I'm sick of it. Really really sick of it. I'm getting more pains in my middle and can't tell if it's gas or nothing or cancer growing and paining me. I hate this.

"This Thursday I will meet with the nurse praticitioner (my doc is out of the country) and find out the results of the CT scan I had last Thursday. I'm also going to tell her I want copies of all of my records. I want a second opinion and I want to send them to the Mayo Clinic. MN or AZ I don't know, but something has to happen here. I'm really frustrated and scared and tired of sitting on some bomb that I don't have a clue if it will blow or not.
enuf.