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!