Living with Cancer of Unknown Primary

CancerCompass: RE: Bile Duct Cancer Year 2010

2010-06-19T17:09:00.000-07:00

CancerCompass: RE: Bile Duct Cancer Year 2010
A post I recently made on another cancer blog. Since I've been so lax here, I thought I'd post it.

Hi Leonard,

I know my situation sounds weird, but I have heard of a couple other people with similar experiences. At the cancer center I go to they have one other person with a similar experience. Definately NOT the expected path for bile duct cancer!

I was diagnosed with cancer of unknown origin first. During a CT scan for my lungs (I had a persistent cough) they found 4-5 tumors in my liver. They did a biopsy and came up with bile duct cancer. Clearly it was not blocking my bile duct as I had no symptoms of any kind.

I went through several chemos including gemcitibine, cisplatin, and others I can't think of right now. Since my tumors are inside my liver, that means it's intrahepatic, and not a good candidate for surgery. Having multiple tumors doesn't help. So anyway, later on they did another biopsy and sent it for some genetic testing and comparisons with other kinds of cancers. Meanwhile I was on oral chemos like Zeloda and lately Nexavar.

The test came back still unclear as to type of cancer, but the best match was liver cancer mixed with bile duct cancer. It's called cholangio-hepatic. No one really thinks I have liver cancer as I've never had hepatitis, my liver functions are great, no cirohsis (sp?) nothing to indicate any damage to my liver. So.... here we sit.

I've had CT scans every 3 months from neck to pelvis for 3 years now. Nothing grows (much), nothing shrinks, it just sits there in multiple tumors ocassionally causing me some pain but that's it.

Does that make things any clearer? Still the best guess is bile duct (mixed with some liver cancer cells) but clearly slow-growing.

I'm off all chemo right now, and will be for a second three month stretch until September when I have another CT scan.

With 2 biopsies now they are sure it is cancer, so no reason to go there (too bad!) it's just an oddly progressing type I guess. Someone else who chats on these boards has shared similar experience to mine, but I haven't heard from them for awhile.

It will be exactly three years on August 1st. :)

Patti

Nexavar...is it working?

2010-01-17T14:54:00.000-08:00

What with the holidays and all, it's been awhile again.
I've had an interesting turn of events!!!!

I went completely off the Nexavar in Nov because it just kept bugging me. A constant sorta nausea, yucky stomach, itching, mild hair loss and didn't feel like eating much but chicken noodle soup. In hindsight it wasn't "That" bad, but I'd been so lucky with side effects that it really bothered me to feel so tired and ill. Anyway, they decided that I'd taken "enough" Nexavar that the CT scan coming up in Dec should give some indication if it was working or not, and that we could decide what to do from that. I was really pushing to try something different like chemo-embolization or heat or freezing the tumors... or something!

Ok, so the results came back and AMAZINGLY it showed some shrinkage!!! Not a lot, and apparently here and there, but I have not EVER showed ANY shrinkage in 2 1/2 years!!!!!! I've asked to have a copy of the entire scan report mailed to me so I can really go over it myself, but it's not here yet.

So..............I'm back on Nexavar again.. Not happy with that, but HEY! so far it's the only thing that has done anything for me, so I'm approaching it with a bit of a tougher attitude. I got back on here and some other cancer sites and realized that as far as negative results from treatment, there's a LOT worse than I've experienced so far and with a little proof that it might DO something (after so long w/no signs) I am motivated.

Anyway, I'm only taking one pill a day (1/4 dose) for two weeks and then we'll meet and see how it's going. So far it's been one week and besides itching I'm doing ok. I can see now how the stomach problems go - I HAVE to have food in my stomach during the day - mini meals - or I get a sick feeling like a bombshell. That's not my meal eating style at all, but I've stocked up at work with soups and crackers, applesauce, etc. and that seems to help.

Went home to Minnesota for Christmas week and had a great time with my sister and brother and his family.

Couldn't BELIEVE all the snow, but it was fun. Back in Arizona it's been in the low 70's so that's nice too! :lol:

So much for that thought

2009-11-07T13:58:00.001-08:00

Update
My 1993 Subaru died! Right in the middle of an intersection! Had to get a new(er) car, so I picked out a 2008 Pontiac Vibe. You can see from the pics that they sure look similar. The Vibe is very nice though, good gas mileage, safe car and kinda cute!

Early September 2009 I had my latest CT scan, after a summer off of all treatment.
Really hoped to continue THAT situation, but unfortunately they detected some growth.

I still don't know exactly how much, but bottom line they explained that there's been "enough" growth since day one to now feel I should go back on chemo. Pretty devastating news.

We're trying Nexavar - an oral chemo used for kidney cancer and recently approved for liver cancer. Since I "sorta' have liver cancer they think it might do some good. We'll see. After the 1st 2 weeks I was up to there with side effects. Couldn't eat much, felt lousy, pain in my sides, skin rash all over and my poor head! I couldn't even touch it with a comb or brush, yet it itched like crazy!

So they pulled me off it entirely for a week and now I'm back to taking 1/2 the regular dose. 2 pills/day vs 4/day. So far so good, but it's not even been a week yet.

Bottom line I guess is that I'm back in it again. I'm praying that everything stays as slow moving as it has been and that I don't get sick from the cancer itself.
We'll see! Best to all
Patti

CancerCompass: RE: Unknown primary cancer site

2009-11-07T13:58:00.000-08:00

CancerCompass: RE: Unknown primary cancer site
Response I wrote to some people at cancercompass.com

I've been remiss - on chemo vacation

2009-09-12T15:01:00.000-07:00

I see I've not blogged for a long time! wow!

My last post was about the genetic testing they did, and that nothing really new came from it except that they eliminated all sorts of "other" cancers that now it is definitely NOT. Ok, so what is it?

They have a name for my cancer now (after 2 yrs!) At least this is the latest incarnation. It's called CholangioHepatoma (means part liver & part bile duct cancer, but all mixed together in each tumor). If I thought bile-duct cancer was rare, this really takes the cake! Having two kinds of cancers in the same tumor is quite a stunt I think.

Regardless, my Oncologist says that he thinks I am acting "dormant". Meaning, as we've been told forever, nothing is growing (much)and nothing is shrinking at all despite 4 different Chemo attempts and a year of chemo pills. The good news of that is that I am on vacation from chemo. I've not had anything all summer!!!!! Now, in September I'm feeling sorta 'normal'? Better, anyway. At the end of the month I have a CT scan scheduled and will meet with my Onc 1st week of October.

Emotionally or mentally, this has caused a change in my attitude. I've found myself doing things that assume I'll be around for awhile. I'd ask Dr. Dragovich if I could believe from his comments that my prognosis could be for three years? and he said yes. Now the problem is... did he count these first two????? :) I'm gonna say Yes!

So, I've been "feathering my nest", purchasing some actual furniture accessories, etc. I took the vacation to E Germany and Czech Republic - still owe some pictures here!!! (I forgot!) and even went to the dentist!

Now going to the dentist doesn't seem very odd, but in my mind while I knew I had some dental problems, why get into it if I'm not going to be around very long?

When I found myself in the dental chair agreeing to have a tooth pulled and making plans to get a bridge, I had a sort of bubbly champagey feeling....Wow! I must think I'm going to survive!!!! That was very strange after two years of thinking any day now I'd be down for the count.

So I'm liking this vacation and hope it lasts a GOOD LONG TIME!
Here's a picture of my sister in Prague and I in Germany.♠

Stardance : : The Official Movie Blog

2009-09-12T14:51:00.001-07:00

Stardance : : The Official Movie Blog

Shared via AddThis

Update on Molecular Analysis

2009-05-10T18:14:00.000-07:00

My biopsy analysis was pretty good,I guess. Not that they got any definite results! (AGAIN) Turns out the "best" match is that my cells/proteins/dna resembles primary liver cancer. But neither my Oncologist nor I think that fits. It Might if I'd ever had hepatitis A, but I haven't. Regardless, they eliminated all the other cancers like breast, lung, kidney, colon etc etc so even Dr. Dragovich thinks it's likely that I'll be around for a few more years at least - because it IS slow-growing whatever it is, and he's doing more research to see if it could be a combo-like cancer such as bile-duct AND liver somehow. He's going to talk to the pathologist again. Anyway, it's great news that it's not a cancer that seems to be in a hurry to do anything. More later....

2009-04-15T23:28:00.000-07:00

I'm not sure where I left things! :) I don't think I even mentioned that they took a CT scan when I called back the next day and told them that pain pills were not doing anything!

So, ya, they took a CT scan to make sure it wasn't anything really dangerous - like bleeding. Nope, so THEN they took me up to the chemo center and IV'd me for 3 hrs or so with steroids to reduce the inflamation of my liver. They figured that the pain was caused by my liver getting too big and pushing on things that didn't like it! :)

The liver was inflamed from the biopsies. They poked me 3 or 4 different times all over. So..... that worked! I went home feeling SO much better and have been taking some more steroids via pills. I'm almost done with that now and there seems to be no after effects. so WHEW!! dodged a bullet.

The weird thing was sitting in the "chemo chair"! I got some very strange feelings and ended up crying and feeling very out of control. Told JB about it tonight and she said that it sounded like "post-traumatic stress". In a way, I guess because it brought up all sorts of powerlessness feelings and fear and all of that stuff. Feelings I'm sure I experienced when I was actually getting chemo, but were so bound up in the whole experience that I didn't realize how traumatic that whole thing is.
Very strange....

Ok, I admit it...Took the Steroids!

2009-04-09T19:04:00.000-07:00

Another whole day at the doc's. Good news! had a CT scan that showed no major trouble. Got a 3 hr IV of steroids that shrunk liver back to size and stopped the really bad, can't breathe pain stuff. All looks good as of this eve. WHEW!!! Do NOT want to do that again! Thanks for everyone's prayers & good wishes :)

After effects of 2nd Liver Biopsy

2009-04-09T06:10:00.000-07:00

I've been Up all night, sigh! I went to doc early today to see why I'm hurting so long after the biopsy. Who knows? Will be calling them back when it's late enough. New pain meds they gave me didn't do much. Fun and games!

While at clinic today, got first results from biopsy... no real news. Confirm that it IS an adenocarcinoma, but no new clues as to what kind. They've sent it off for molecular analysis and markers, but will take 2 more weeks. Have an appt then to find out. Told them no way to mess with my vacation, she said ok, can she come with? :) If they can identify some markers, will also indicate what kind of chemo works best.

One interesting thing. They first poked me mid-body near diaphram where CT scan showed a big tumor. Turns out they had to try somewhere else because the tumor there was necrotised (sp?) was already dead! Good news because that means some HAVE died over this entire 1.5 yr process!

Nano-probes for cancer?

2009-03-29T17:11:00.000-07:00

gotta love nano-technology! Why we need MORE cancer research!

Nanoprobes detect and destroy cancer

Vacation of a lifetime?

2009-03-28T14:21:00.000-07:00

My sister and I are going on a river cruise! In two months come hell or high water (or low water?)

This is a river cruise along the Elbe with Viking River Cruises. It starts with 2 days in Berlin, a transfer the river with a stop in Posdam. Then Magdeburg, Dessau, Wittenberg, Torgau, Meissen & Dresden Germany. Then a float through "Saxon Switzerland" as they call it, with a stop at Bad Schandau. Then on to Czech Repulic at Litomerice & Melnick. Then a transfer to Prague and 2 days there. Wow!

2009-03-28T13:46:00.000-07:00

I'd been waiting 6 weeks to see my actual Oncologist last week. It was to be very exciting because they have re-decided to find out just what sort of cancer I have. They were going to send the biopsy they'd taken back in Aug. 2008 to a fancy lab that would look at it genetically, do a "molecular analysis" and see if they could find a better direction for treatment.

The long delay was to make sure that this lab had time to get the results sent back.

I thought I'd posted a note about my Oncologist appt the next day! I haven't been on in a few weeks and I see now that there's nothing there!

WELL, there was nothing "there" for my appointment, either! I was SOOooo annoyed and frustrated! Turns out that I guess the sample biopsy from 1.5 yrs ago when I was first diagnosed was no longer good enough, not big enough, I don't know, but it wasn't useable.

Instead of letting me KNOW that, though, nothing happened and I waited 6 weeks for nothing! Someone dropped the ball. They KNOW that cancer patients are always on edge waiting for results, how could they???

Anyway, I showed up for my appointment and my doctor says,"Well, let's really find out what you have". I said WHAT??? you were supposed to do that 6 weeks ago!!! They Should have called me and scheduled a new biopsy when they found out the old one wouldn't do. ARGUUUUHHHHHH!

So I am now scheduled for a biopsy next Friday, April 3rd. I'll have Another appointment on the 9th for results. But I already know that despite the fact that they plan to (again) send it off for genetic/molecular analysis, it won't be back in one week! I'd bet $100.00 on it right now! We'll see.

Sorry to keep everyone wondering what happened! Other than that, I'm hunky dory and planning the "vacation of a lifetime" in Europe with my sister in 2 months. I'll be DARNED if the cancer people mess that one up!

I know, life goes on

2009-02-22T22:56:00.001-08:00

It's been a while. Life went on and on and I am happy that it does.
I had a wonderful/awful Christmas. I'm still healthy and so far without treatment.
I had a CT scan in Jan and something grew again.

Scary, awful, scary, awful, and more of the same.

I have finally had some pain. You have no idea how I do not want to report that. Pain means progress, pain means trouble, pain means pain.

I'm so frigging scared now I don't really know what to do about it.

The last CT scan showed some more growth. I'm pretty devastated about that. Add to it this feeling pain thing. It got their notice. I joked with my sister that heck, if I knew that reporting some effects would get their attention, I should have done it lots earlier!

So they decided that they should send my biopsy somewhere new to be genetically analyzed. Especially because my sis got triple negative breast cancer about 9 months after I was diagnosed. They are now wondering what kind of cancer I really have.

Gee, I could have told them that this was an important question a year ago!

March 19th I have an appointment with my actual oncologist. He's hopefully going to know what the analysis said, and depending on what they find out, hopefully have something more specific to treat me with. Having a cancer of unknown origin is the pits. They really have no clue what to do. The idea is, perhaps i really have breast cancer too! If so, they are all hot on some new treatment that is so far only approved for breast cancer. If somehow my reports can say that, they are all hot on giving me that trial drug. Sigh............ I don't know what to wish for.

more pictures

2008-11-10T01:23:00.000-08:00

Pics from vacation in Wisconsin

2008-11-10T01:15:00.000-08:00

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

Catching Up

2008-11-10T00:26:00.000-08:00

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-

2008-08-24T12:35:00.000-07:00

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

2008-08-09T16:34:00.000-07:00

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!

2008-08-09T15:26:00.000-07:00

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?

2008-07-24T14:27:00.000-07:00

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

2008-07-24T13:54:00.000-07:00

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

2008-07-13T03:11:00.000-07:00

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?

2008-06-30T23:24:00.000-07:00

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

2008-06-02T07:07:00.000-07:00

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.”

Interesting Website, Interesting Lady!

2008-05-31T12:46:00.000-07:00

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

2008-05-28T08:26:00.000-07:00

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????

2008-05-23T09:31:00.000-07:00

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?

2008-04-23T07:59:00.001-07:00

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!

2008-04-23T07:56:00.000-07:00

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

2008-04-08T01:25:00.000-07:00

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!

2008-04-07T18:19:00.000-07:00

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

2008-04-07T18:18:00.000-07:00

Epiphytic Notions: A Miracle Enveloped in a Tragedy

second Opinion Not necessary

2008-04-04T02:27:00.002-07:00

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

2008-03-25T23:39:00.000-07:00

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

2008-03-25T23:34:00.000-07:00

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

2008-03-25T23:24:00.000-07:00

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

2008-03-02T21:46:00.000-08:00

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.

Seems like a Friday

2007-12-20T16:38:00.000-08:00

Cisco did well at the Vet's yesterday. He seems to be healing ok and no infection. Good news. He just meow'd for the first time since he was attacked! Music to my ears! I was so afraid that his vocal cords or some nerves had been damaged. But when I came home this afternoon he wanted food (another good thing!) and I heard two soft meows!

I've had a bit more discomfort than usual. Pains up under my ribs and on my right side. Prolly due more to stress than anything. Hopefully they will not bother me over Christmas. I have NO idea how I am supposed to pay for all these medical bills! I thought it was next to impossible to get coverage for MY cancer, but Vet bills and surgery are way over the top! It's going to be something like $2000 or more before all is said and done. That kind of money is out of my league! It's like two months pay if I was full time! More like 5 months at my current rate!

I'm finding it more difficult than usual to deal with issues like this. My coping skills are pretty worn down I think. I'm thankful he's doing well, and can't imagine not having him as my buddy at home, but money issues suck!!

What a weekend!

2007-12-17T08:35:00.000-08:00

Cisco is doing better, but a more terrorized cat I've never seen. If there is so much as someone walking by, or a noise outside, he panics and runs to hide for an hour or so. He's eating a bit more. I have to take wet cat food and water it down into a "gruel", but he eats maybe 1/4 cup.

We spent most of the time wrapped up in a quilt on the couch. He wants to stay close to my body so we snuggle on the couch watching TV. Not a good way to get anything done, but it feels like the right thing to do to support Cisco's recovery.

I'm exhausted from dozing on the couch and not really sleeping.

The Animal Control man came to the door again on Saturday, saying he had one more question. "Do I think the dogs are dangerous?". How on earth do I respond to that?
They were certainly dangerous to my cat who was sitting on my stoop. The neigbors chased them away earlier in the day when they threatened Their small dog. I hemmed and hawed and said I really didn't know, that my concern was that the owners were responsible for the damage to my pet. He said he'd be serving the papers today if they were home (they were). I don't know how things proceed from here, but I assume I will hear from the court eventually.

Wednesday I take Cisco to the vet for a check up. I hope they will say he's out of the woods, but I quake with fear every time I see his poor damaged body wobbling around the house.

More about CISCO

2007-12-15T16:31:00.000-08:00

I got Cisco, my 10 yr old cat, home last night.
He's going to be ok. He's very shaky, and in pain and fear, but today is improved over yesterday and I'm hopeful that will continue and he'll mend fine.

The vets had to shave his neck and shoulders to treat the bites from the two neighbor dogs who attacked him. Then they had to surgically place a wire through his jaw to mend the broken bone. He can still eat and drink, but the bones are wired together. See photos.

So he's bald about the neck and shoulders and I'm bald above the neck! What a pair we make!

Cats and Dogs

2007-12-13T15:28:00.000-08:00

I had probably one of my worst nights last night.
My cat of 10 years, CISCO, is used to a short "constitutional" outdoors after dinner most evenings. As the night starts earlier and it gets colder, that time outdoors gets very short.

Last night I let him out about 6:30. It was supposed to be a cold night here in Tucson so I went outdoors after about 10 minutes to call him back in - if he wasn't already waiting at the door.

As I'm heading to the front door I hear an ungodly ruckus and huge barking. It sounded like a war outside my door. I open it to see two HUGE blonde dogs attacking my cat. ON MY FRONT STEP! These dogs had Cisco down and both were at his throat. They were maybe 2 feet away. I was petrified! One dog looked up at me and then returned to Cisco's throat. I started screaming! Fortunately my noise must have scared them, so rather than attacking me with their charged up adrenelin, they ran off down the alley. Cisco tore off across the yard the other way.

I knew who the dogs were, I was pretty sure. I hadn't heard them barking as they usually do two houses down, but they have been loose before and are unique in our neighborhood. I immediately started calling and whistling for Cisco, but I knew that since he is such a mellow cat and avoids noise, cars and any commotion that it would probably be some time before he returned - IF he could return. IF he wasn't dying, IF he didn't bleed to death or freeze, or ... I was in a panic to find him.

It was cold. My neighbor happened to come out of her house just as I started calling and she immediatly put off her grocery-store trip to help me. We called and searched for Cisco for almost three hours. We ran into a neighbor on the next block who saw two blonde big dogs twice earlier in the day. She said she'd recognize them again and believed they lived up near us. We called and searched, freezing our butts off.

Finally I had to go in and warm up. I'd left my door open in case Cisco returned when I was out of sight, but no such luck. My house, of course, was also freezing by then. My next door neighbor on the other side came home and said he thought we should check HIS back yard which is fenced with wood. As my neighbors went around back to do that I came back outdoors to join them. As they came back up the alley, one's flashlight happened to go across the street into a bush & cactus that I'd searched before, but we saw the reflective eyes of a cat!!!!

I went up to Cisco who was laying there patiently, but he did not get up. He let me get next to him and after a minute, complaining, he let me pick him up. I first felt puncture marks around his neck. As I talked softly to Cisco, my neighbor grabbed my keys and pulled my car out and we rushed to a nearby emergency vet office. In the car I noticed a cut on his mouth and that his mouth didn't look "right".

The kind people at the pet hospital took x-rays and determined that Cisco was very lucking indeed for such a brutal attack. His central jaw bone was broken. He had to have surgury and his jaw had to be wired. It will have to be that way for 4 months.

The good news is that there was no internal organ damage, no other bones broken, the punctures only deep enough to form air pockets but not bleed much or pierce the body. We were lucky that I was there to see the attack and stop it almost immediately. Another minute or two and I'm sure that Cisco would have been crushed dead.

He's still in the hospital right now, and they want to keep him another night as they still can't interest him in trying to eat and they want to know he'll eat before they release him. I can't tell you how many gallons of tears we've spilled for this charming, well-loved little guy.

I also hate to tell you how the dog-owning neighbors are trying to pretend it wasn't their dogs. After asking me several times if I saw the dogs who attacked (yes indeed) and if I could recognize them (oh yes) they left their house with no dogs in sight - indoors or out. A little later they returned and all of a sudden their two blonde dogs (boxer?) were in the front yard barking their heads off at me across the street where I'd been hunting under a bush.

As I crossed the street the woman asked me again if I recognized her dogs -"where they THESE dogs?", as the ones who attacked Cisco and I said I sure think SO! She said (finally!), "Oh, it couldn't have been OUR dogs as we never let them out." Right. and accidents never happen. (And I don't have stage 4 cancer).

A bit later the dogs disappeared entirely and didn't come back until late this morning. It appears that the neighbors are going to deny responsibility. How sad is that? Unfortunately for them, the lady had asked me to look at them again to see if I recognized them. By the next week or so I might not have been absloutely positive, but thanks to her showing me the dogs in the evening light, I could see the same one looking at me the same way it had looked at me before. Nuff said.

It's 5pm. At 6pm I can go "visit" Cisco in the hospital. Please say a prayer for his fast recovery. I need my cat to help me with this cancer. He's the only one that makes home, "home".

Anyone ever tell you that you DON'T have Cancer?

2007-12-10T15:43:00.000-08:00

One type of cookie down, one chilling in the fridge.

While engaged in these holiday domestic duties I've been reflecting on my current "on hold" status as a cancer "survivor" (Still not entirely comfortable with that term!).

Having a cancer of unknown primary - CUP - is bad enough. If you tell someone you have cancer, invariably you are asked what "kind". Then you have to either go into an explanation of what you don't have, and generally it's more than they wanted to know, or you just say where it is located - in my case, in my liver.

But now I get to compound that issue by being in a no-man's-land state of no growth. So, am I in active treatment? Is this going to last very long? Does it mean I might be "healthy" for a while? What?

It's led a couple of people I know to ask me if I'm SURE I have cancer in the first place. Now how in HECK are you supposed to answer that? Well, they took a biopsy and checked it twice and determined they were "naughty" cells. (Hey, it's the holiday!)

They are "slow growing" so much so that there's been very very little change since they first found the growths. Does that mean that they are not growing at all? Does it mean they are not actually cancerous? Does it mean .... what?

It DOES mean that the two different chemotherapy protocols I've had have NOT appreciably changed anything. OR.... maybe they did! Or maybe one did but we don't know which one.

I can see why some family and friends are wondering if I've gone through the last 4-5 months for nothing! Since I'm "invested" in all the fear and remorse and pain and loss so far, I don't "want" it to be for "Nothing". On the other hand..... I'd love to just turn the clock back to July when I was blissfully ignorant of anything in my liver that didn't belong there.

I see more significance and truth to the hat I purchased from the "Crazy Sexy Cancer" website all the time. The hat is a knit cap totally unremarkable except that embroidered along the front is the phrase "FUCK CANCER"! No kidding.

Note to those who haven't heard of this yet:

Cancer Survivors Kris Carr and Erin Zammett Ruddy

Crazy, sexy…cancer?
It’s quite the feat to laugh in the face of a deadly
disease, but that’s what Kris Carr—the woman behind the new documentary Crazy Sexy Cancer—does every day.

I love this whole interview at http://www.glamour.com/health/articles/2007/08/crazysexycancer also see Erin's Blog at: http://www.glamour.com/lifestyle/blogs/editor

One of the interviewer's (Erin Zammett Ruddy) questions:

ME: What do you do now when cancer gets to you? Buying things I don’t need and can’t exactly afford, like a third pair of Bruno Magli sandals, always helps me.
KRIS: Shopping is often my cure, too! Or I dust glittery powder on my face and dance to hippie music. I also pray, do yoga or dive into an inspirational book. If I let a blue mood run rampant, before I know it I’m obsessing about the color of the satin lining in my coffin—will it match my dress? That’s when I feel like Alice in Cancerland falling down the rabbit hole and just have to stop. Seriously, you should try glitter; it’s incredibly healing.

I may not be in the age group these women target (Under 30 more power to 'em) but I'm right there with the sentiment! (I WAS a hippie!) So I wear the hat even if I cringe sometimes that some little ol' lady at the Cancer Center will be offended. Or that someone will yell at me at the grocery store. OH WELL. Where do I get the glitter? :-)

COOOKIEEEEEEEEEEEEEEE

2007-12-10T12:27:00.000-08:00

I'm baking cookies today!

You KNOW I must be feeling better. I have the day off. Yesterday (Sunday) I prepared the dough and filling for one of mom's classic holiday cookies - Date Nut Pinwheels. DELISH!

You make the dough and filling separately and chill them overnight. Today I rolled out the dough, spread the (very thick) filling and am now freezing them for a bit so they will slice easily.

I've made these a million times, but I had to call my sister Friday night to make sure I had MOM's recipie. Janel was up late packing for her ski trip to Montana, so she wasn't upset with me calling late, and fortunately (such organized sisters) she had it right at hand and it took only three minutes away from her packing. Hope there's a lot of snow in Montana this week!

Yesterday I called my sister-in-law, Carol, to get the recipie for Nut Butter Balls. Others call them Russian Tea Cakes, Mexican Tea Cakes, etc. but I wanted the one that makes real moist, melty butter cookies, not these dry crumbly things most people have. Anyway, Carol had her mom's recipie right to hand and it matched my memory of the proportions my mom used to use, so those are next to put together.

Third will be Chocolate Chip Oatmeal Cookies - my personal lifetime favorite cookie. I hope I can get to them today, but if not, I still have lots of time before I leave for my daughter's place on the 21st. I have to make sure to not eat them all up ahead of time!

Time to slice the pinwheels - more later....

Wow! Guess it's been a while!

2007-12-08T13:32:00.000-08:00

I've not blogged for a month! It's hard to believe that cancer has not been SO on my mind that I would not have time to blog!

The fact is, cancer is very much on my mind, but I'm in a "break". I had a CT scan in November that showed NO CHANGE. Nothing shrank and nothing grew.

So my doctor said that I might as well take 6 weeks off from chemo and do another CT scan on January 3rd. I meet with her on the 10th (My daughter's birthday - hope that's a good omen!) and we'll see what has happened.

I do NOT like this current state of affairs, but it is better than to find out things are getting worse, so I've just gone about things and tried not to worry.

I bought a new computer in the meantime. A MAJOR and not really affordable purchase, but more about that later. I'm right now in the process of setting up email, addresses of family and friends and all of that sort of thing.

I will post a "real" post tomorrow.
tata

CHEMO YESTERDAY

2007-11-02T12:45:00.000-07:00

I spent all day at the Arizona Cancer Center yesterday. Dr. Appt., blood draw and then 6 hrs of chemo. YUCK! It was Taxol and Carboplatin again, so I can expect to be in a bunch of pain by tomorrow or monday.

My stupid drug store is being pissy about my prescriptions. Believe it or not, the night before I left I picked up the antibiotic my primary had given me for my wheezing, congested lungs. I was packing about 9:30 that night and decided to divvy out all my pills for 10 days in a container so I didn't have to bring all the bottles. Good plan. The antibiotic had 30 pills - 3 per day for 10 days. Easy, I was going to be gone for 10 days. As I'm putting them into the container, I only come up with 25! They shorted the prescription! I called right away as this CVS closes at 10pm. The pharmacist said it was too late to fix. I said I'm leaving at 6am for 10 days she HAS to fix it. She finally said to come to the window as they wouldn't let me in the door anymore. I only live 1/2 mile away. I dash out (just the thing I wanted to be doing!) and go to the window. She put 5 more pills in my bottle and what really got me, is that she acted all cheery and didn't apologize or anything. OOOPS! You just mis-filled a presecription that is dose sensitive lady! That's not something to just blow off!

So I'm annoyed today that despite getting paper prescriptions yesterday, they have to call in to verify them with my Dr. She decided to give me paper rather than call them in just to avoid this issue! So of course, here it is almost 1pm Friday and they still are not ready. The guy promised to call me back within 1/2 hour. We'll see. These are NOT heavy duty drugs, not narcotics or anything, so I'm surprised at the delay. Good thing I have 24-36 hrs before the chemo after-effects hit me!

I'll be dropping off my pictures when I go in to pick them up, so shortly I'll post more about my trip - including the great adventures in urban life while visiting my daughter in Chicago!

later, Patti

Family Pictures

2007-10-30T09:42:00.000-07:00

As long as I'm posting pictures from Janel's "stash", I might as well share some of the other ones. These are of my parents, Edward & Doris (Sweeney) Bush, from their younger days.

These are from Ladysmith, Wisconsin in the 1940's.

Most Hair Award

2007-10-30T09:24:00.000-07:00

I lied, THIS is the most hair I'll ever have! (That's me, off to the right, bleached blonde hair, leaning on my hand talking to someone.)

Back in 1968-69 when I was a freshman in College at the University of Minnesota was the ONLY time in my life that my fine, straight hair was in style. This was the birth of the hippie days (in Minnesota at least). The Whole Coffeehouse was in Coffman Student Union on the campus. I ended up getting very involved in it and became an MC at one point.

Janel and I went through a box of pictures she has of the family last night. I wanted some older pictures of myself, my mom & dad, etc. for a little album I'm putting together for my daughter, Tara. She had this one which I didn't remember at all! Those were the days! .

Home James

2007-10-30T08:39:00.000-07:00

Wow, here it is Tuesday October 30th already! I'm scheduled for a 7:20 flight back to Tucson today - and I'm not ready to leave! It's been great being back in Minnesota. I cannot believe how refreshing it is to my e yes and soul to see green grass, "real" trees, water, and of course my family.

(The posted picture is of me in grade school. Probably 5th grade??? Not sure, but it's the most hair I'll ever have!)

I'll have a whole travelogue to post later, but this morning is my first chance to post here and then I have to go pack and get ready.

Cancer-wize this last few days has been traumatic because my hair is falling out. Big time! Saturday, my sister Janel had scheduled me for a haircut with Mick. Mick has cut her hair (and mine if I'm in Minneapolis) since we were in college. But Thursday I noticed that there was more hair than usual around when I took a shower at my daughter's home in Chicago. Hmmmmmmmmmmmmmmm.

By Saturday morning it was obvious. I'd avoided the issue for two days, but when I demonstrated to Tara that it was indeed coming out and grabbed a bit from the side of my head, I was SHOCKED to see a whole tuft come out, not just a few hairs. AUGHHH.

I still went in for my appointment at Mick's salon, Avante (on Lasalle across from Macy's downtown), but when he came to my chair I told him that things had changed and I didn't know what to do. He went and meditated on that a few minutes and came back and suggested we cut it really really short and see how long that lasted. At least I wouldn't be as annoyed with hairs falling in my face. So I got a boy cut for sure! He said "don't be scared, but I'm going to buzz the back". It was scary, but the front still had some style and looked good with what little blonde was still there. And it did lessen the messiness.

Well, by today, there is no denying that it is going fast. Everytime I touch my head in any way, more falls out. My bed pillow has a fine layer of short hairs. Janel insisted that I look at some of her scarves. I didn't want to, but the fact is that after I take my shower this morning, I may not WANT to go on the plane looking half-shorn. We'll see.

By far this is the most emotionally traumatic issue I'm facing so far. Losing my hair means I will "look sick". Up until now, you wouldn't know I am in chemotherapy by looking at me, and my energy level has been ok enough to keep a "normal" lifestyle. But with my hair gone - there's no denying that something is happening. Ewwwwwwwwwwwwwwww..

Thank god your hair is on your head, not some other part of your body that you can see all the time. When "I" look out at the world, I don't see what the world sees. I don't see my face, hair, eyebrows, etc. This is a good thing. I just have to learn to deal with the fact that other people won't be seeing what I "see" in my mind. That's been true, really, since I gained weight and got past 45. I still "see" me as 40 lbs and 10 years less than I am anyway, right? So what's a little hair????
(A LOT!)

Later..........

The ocean in Milwaukee

2007-10-22T07:41:00.000-07:00

Here I am in sunny Milwaukee Wisconsin. I've been visiting my bff Kristin for a couple of days, and in FACT we had the most PERFECT day yesterday. The temperature got to alomost 80 degrees! It was warm, sunny and beautiful with lots of green and an acceptable amount of Fall reds, yellows and oranges.

Kristin knows I love and miss the ocean. So she designed a "day at the ocean" for me in Milwaukee. We went to the shores of Lake Michagan near downtown where they have a very lovely park. They also have a breakwater that extends out into the lake quite a bit!

We walked to the end of that breakwater and sat on these huge boulders and let the lake spray our legs and faces. The water was wavy enough for some surfers near the shore (believe it or not!) and did its best to give us the illusion of the ocean. After all, you can't see to the other side!

The day was so perfect, so warm and sunny, it was always in our thoughts and on our tongues - "What a Perfect Day!!" Incredible.

We spent several hours mid-day doing the lake thing, and then stopped for iced coffee and sandwich/soup at a cute spot just off the lake. Again it was perfect. They have seating outside, and of course everyone in Milwaukee was taking advantage of the RARE high temperature for October 22nd! Alterra is the name of the place. Kristin could NOT stop raving about her soup - I mean it, she couldn't stop! My cheese & tomato sandwhich was also terrific, but I Could stop raving about it. :-) The iced coffees were terrific and we got to sit outside where they have a patio as well as GREEN lawn space to sit and eat your treats.

That's the other thing that has been getting me. From the trainride to Milwaukee to Kristins wood-surrounded apartment, I've been dosed in a plethora of green and trees. I LOVE IT!! It brings back all sorts of childhood memories, feels SOOO "at home" and is a total treat to my desert-deluged eyes.

Kristin has given me a weekened from heaven, an I love her dearly for it.

More later - on my way back to Chicago this afternoon.
Patti

All systems go!

2007-10-19T08:11:00.000-07:00

I went to the clinic to have them look at my arm after all yesterday. It was still a bit red and tender, but they decided it was probably irritation of my vein from the chemo, not an infection. I took some more ibupro last nite and it's pretty much gone today. YEA!

Got that 3 mins to talk to my oncologist "off the books" which was great because we talked briefly about how the Taxol chemo went. When I told her how awful I hurt for 3 days she said "I tried to warn you!". Well, sheesh. Just tell me right out! It's gonna hurt like a bugger! I'm not mad though, I had gotten the idea pretty clearly that this chemo session would probably be worse in some way. We're all happy that for the next 2 weeks nothing more is gonna happen and my trip should be fine and fun! My only "after effect" is how easily I tire. Just walking last night from where we parked my car up to the (very fancy) resort where the banquet was, was a total mind-blowing effort!

Anthony, who is the young man I work with and gave a ride to the banquet, felt so bad because he chose where to park, and as an afterthought realized we could have valet parked, or he could have dropped me off. I didn't think of it either, I didn't realize how short of breath I've become! Anyway, it was fine. and the sweetheart fetched the car afterwards and I didn't have to walk anywhere in the high heels I NEVER usually wear! :-)

My boss didn't win the customer service award she was a finalist for, but WE know she deserved it, and we all had a good time at our table anyway.

Today I have errands and appointments, and then figure out how to pack for Midwest (cold!) weather. I don't want ot bring a big suitcase, so it's going to be fun to try and figure out. My flight to Chicago is at 6am tomorrow, so I won't be posting until I can find another computer.

Patti <----happy camper!

TGI Wednesday

2007-10-17T17:24:00.000-07:00

I've not blogged for a few days mainly because I was too busy being miserable. This chemo got to me. I was hurting pretty bad - muscles and bones just hurt and wouldn't stop. Finally, yesterday that was pretty much gone, and then I was acid stomachy again. But still, MUCH less pain.

My poor sister had to put up with me being pretty cranky. I was so glad she was here though. Just being able to not HAVE to get up for a glass of water is a real treat. She did more than that, of course. She fixed meals, reminded me to take a pain pill BEFORE I was miserable, got me treats, watched TV with me and laughed at stuff which helped ME laugh at stuff. A "very nice thing".

Today I'm quite good. JB left this morning and I went to work. A bit achey, but wonderful compared to earlier. I found that the top part of my arm feels bruised or sore, and a bit warm. My sister and boss finally convinced me to call the Dr. office - since, duh, it's the arm they put the chemo needle in! (Would I have thought of that? I dunno!) They want to make sure I don't have an infection, of course, so I am warm compressing it tonight and will call them in the am. I guess I don't want to "complain" about anything because I want everything to be "well". I have to moderate that with some balance, I know!

The Dr office said the worst would be to have to take some antibiotics, that it wouldn't prevent my trip - that'd be wayyyyy to tuff to cancel!!!

So, I'm still planning to leave Saturday morning - I can't wait! This cancer stuff really shows you how much you can miss your family!

Hugs to all,
Patti

Ok, Not so hot today

2007-10-14T14:51:00.000-07:00

I guess I've been really lucky, but today - two days after my new chemo recipie, I'm not feeling too hot. Sort of like a lousy flu with headache and hip, shoulder, back ache.
Not fun, though of course it could be Much worse!

My sister Janel should be here very soon. It turns out she drove to Phoenix with a friend of hers and can stay over a couple of days before she has to get back to Minnesota! Two trips in a month! WOW! I reaally wanted to have everything nice and shiny here, but that's not going to happen I guess. I get up to do one thing and have to sit down again in 5 minutes.

I hope this doesn't last too long. I have to work this week and then the BIG trip for me to go back to the midwest is next weekend. I'm pretty confident, actually. Being able to go 3 weeks between chemos - even rougher chemos- seems like a LONG time in between. We'll see.

The big difficulty I have, emotionally, I guess, is how far out can I reasonably plan my life? I asked my Oncologist this on Thursday. No one knows, of course, and with an unknown primary it's even worse, but...am I foolish to take a trip at the end of October? Can I make plans for Christmas? My birthday? New Years? She said that I should be able to make plans for the holidays. Then she said that next year I should be able to make plans for the summer. WOW!! That sounded so good to me! I know it is no guarantee, but it's a lot better than thinking I'm going to be bedridden any minute or in to much pain to move!

I don't know how to go about living "this" life, I guess. I'm sure it's the same for everyone else out there too. How do you go about it?

New Chemo drugs today

2007-10-12T17:57:00.000-07:00

Hi again,
It's 6pm Friday and I just got home from chemo. They dropped gemcitibine and added Taxol. They also gave me anti-inflamatory iv's to help ensure that I don't have an allergic reaction to the Taxol.

All in all I was there just over 6 hours. That's tiring just in itself!

Anyone else out there on Carboplatin and Taxol? I gather that combo is used for many diverse types of cancers... are they all adenocarcinomas? Whereever they come from?
Just wondering.

I guess I have to worry again/more about losing my hair on Taxol. My Onc didn't mention it when I met with her, but checking it out on the internet seems most did.BUMMER, I thought I was being lucky about that at least! Still crossing fingers.

I'm tired. I'm hungry but don't have a clue what to eat and don't want to cook. I did fall asleep for an hour or two while getting the chemo, that helped! My exciting Friday night looks like a TV movie and early to bed! {{{{{{{can't stand the excitement!}}}}}}
Hugz,
Patti

A Very LONG Big Day

2007-10-12T04:11:00.000-07:00

It's just past 4am, actually on Friday. I mentioned that I had a CT scan on Tuesday and would get the results Thursday just before another chemo treament.

Well, that's not exactly what happened. :-)

Instead of the normal blood tests before chemo, they called me in to meet with my Oncologist first thing. RESULTS?? Well, no news is good news. There has been no growth in the masses in my liver. So, the Carboplatin/Gemcitibine combo seems to have at least kept them from getting any bigger. I take this as GOOD NEWS!

The tiny spots (1-3mm) ya millimeters! in my lungs have not changed either. The report said that really they couldn't see much. My doctor is not concerned about these and does not believe I have lung cancer as primary, but they mention them on each CT scan just in case there IS a change.

SO, my Dr is now recommending that we put the Gemcitibine "in our back pocket" since we know that at least it seems to be effective and stopping growth. Let's not wear it out. OK, so then what?

She wants me to switch to a once every 3 weeks series of a combo of Carboplatin and Taxol. Hmmmmmm. The idea is that the Taxol might actually SHRINK the liver masses. The side effects might be a bit more severe, but then I've not had very many side effects at all on the Gem, so I'm in pretty good shape to try it.

We went around a bit about scheduling since I want to go home and visit family from the 20th to the 30th of OCT. This was planned on my old schedule, and we set up the next chemo for next week. Ok, but I really wanted to be able to attend a banquet where my boss/company is up for a Wells Fargo sponsored award in customer service. so if I could avoid a 5 HOUR chemo treatment that day, sure would be nice!

While juggling a bit more, she mentions that actually it seems that if someone responds with muscle/bone pain from this new protocol, it tends to happen 3-4 days after treatment. AUGGGH! That would place me on a plane flight when it hit.

So, bottom line is that in a few hours I'm going in for this new treatment. 10am my time (currently Pacific). IT's now 4:30 am and I'm wide awake. Oh FUN

I've been having some heavier lung congestion than usual the last week or so, and when I told the Dr that she prescibed me dexamethasone (a corticosteroid) to take tonight and in the morning before I go in for Chemo. Seems to be keeping me up.

This whole thing started because I had a persistent cough and on and off heavy congestion, so it's just a timing thing that it's happening now I guess.

Conclusion for today? I think the CT scan was good news. I had all sorts of questions prepared for this appt. questioning why not do more targeted treatment in my liver, other kinds of treatment,etc. Her answers seemed reasonable to me, in that continuing to chemo my entire system can still get at the "unknown primary" and while I am tolerating it well and not growing the tumors, to work on finding a way to make them smaller. She assured me that that is not ALL in our aresenal. At any point we could target any area that starts to cause problems or switch to another methodology.

I worry a bit that I'm being a bit willy-nilly about all this, and maybe I am. There's so little information on unknown primaries and on liver cancer that is not surgically removed that I don't have much else to go on. Bottom line I guess it makes sense to me to be as aggressive as I can as long as my body is giving me "go ahead" messages.

One odd note - which makes me wish I understood more about CT scans. my Dr mentioned that they saw THREE masses in my liver this time, not Four! Was the other guy hiding or what? Weird!

Ok, gonna try to close the peepers for a bit. Wish me luck tomorrow!

Disability

2007-10-06T13:44:00.000-07:00

It's Saturday, and I am needing to work on all this paperwork from Social Security today. YUCK! Because I am diagnosed with a Stage 4 cancer, I have to prepare for the very real possibility that I will become completely disabled at some (hopefully not too soon!) point. Right now I'm only managing to work part time. Partly because of the Chemo treatments themselves, and partly because of the fatigue they cause.

I'm so VERY fortunate right now that I am in very little pain. I'm also fortunate that I have such a wonderful boss who is letting me adjust my hours to whatever I can manage. I don't know WHAT I would do if I wasn't able to work at all. What would I live on? As it is, the reduced hours are making it virtually impossible to pay rent and utilities! So, I've applied for Social Security Disability.

It takes months for them to process this request. I just got two HUGE forms in the mail that I have to fill out this weekend. One is my job history (since birth I think!) The other is pages and pages to fill out of everything that is "wrong" with me. Such Fun! The biggest problem, of course, is how to predict how I will be feeling from day to day, let alone in the future.

I'd much rather be blogging!

Fridays are the best

2007-10-05T20:48:00.000-07:00

With no chemo yesterday I'm feeling great! It makes it hard to believe I really have cancer at all - let alone a cancer with an incredibly short prognosis!

I can empathize with all the young people with cancer who think "I'm just too healthy to have cancer!" Me too!

I wish some other people would come upon this blog and send a note. Its no fun feeling you're the "only" one out there. I KNOW that others have undiagnosed primaries too.

I'm doing a lot of thinking about the CT scan I will be having next Tuesday. It will be such an important milestone. IS this chemo thing working? Am I getting better, worse or staying the same? What do I do in any case? It's unbelievable how lonely this all is.

I didn't work on my Social Security Disability forms today which means I'll have to do them this weekend. The financial "realities" are almost as gruesome as the cancer. Not having a spouse or savings or other sources of $$$$ I have no idea how I'm supposed to live while I'm busy surviving cancer.

But it is Friday night and I'm going to go watch a movie on tv.

More later...
Patti

Time Flew!

2007-10-04T10:40:00.000-07:00

Wow! I started this blog believing I'd be posting all of the time. After figuring out how to set it all up, time flew! Today is my Thursday "OFF" from Chemo. I am working this afternoon so don't have much time, but realized I'd not posted a note for quite a while.

My sister came to visit last weekend. She's 18 months older than me and thus my "big sis". I'd not seen her for 2-3yrs as she lives in Minnesota and I'm down here in Tucson. It was GREAT having her here! Thanks JB!

I am so used to living by myself that having someone "around" was a bit weird to get used to, but we really had a good time. I seem to be having relatively mild reactions to the chemo so far. Basically my stomach burns when it's either empty, or about 2-3 hrs after I've eaten.

I've been trying to figure out what to eat that may minimize this, and so far am sticking to blander food. I KNOW that anything with tomato sauce, for example, will kill my tummy almost immediately!

My stomach problems put a bit of a crip on our activities, and limited what I could order in a restaurant, but we had fun anyway. The picture of us at lunch is in CARUSO's outdoor garden. The other picture is of Janel on our drive up the mountain near my house. She REALLY helped me re-do and organise my kitchen, for example. Not "fun" but very very appreciated as I've not had the energy to do it and thus haven't been cooking or using it much. Hopefully now that it's layed out better, cleaned up, re-organized and all, it will be easier.

On the really fun side, we went to Sunstone, which is a place here in Tucson that has retreats, workshops, alternative therapies and all sorts of stuff in support of people with cancer. I went to a one day laughter workshop the weekend before last and checked out their campus. Beautiful! With a pool! You can use the pool! IF you are with someone else. Well, most times I don't have anyone else "with" me, so I've not been able to take advantage, but last Saturday, with Janel my sister here, we had the whole thing to ourselves for a couple of hours. GREAT FUN and lovely in the 95degree heat! I am NOT posting the picture Janel took of me in a swimsuit! :-)

We hung out a lot too, had a couple of good talks, and went out to eat a couple of times. All in all it was wonderful to have such a huge supporter right there with me.
Janel has been the best! She's helping with government paperwork baloney - like Social Security, helped me with my kitchen, as I mentioned, been there to talk to me almost daily if I want (and I've wanted!) and just has let me know in a million ways that she loves me and wants me well. I tear up just thinking about her.

Anyway, we're of the type to not "wear our feelings on our sleeves" so it's a little hard to show how I feel to anyone. More about that another time. I'll also have to share the story of the "angel" I met at the Laughter workshop! Come back and visit soon. I'll be posting more now that I've got this running smoothly.

Best Explanation of Unknown Primary I've Found to Date

2007-10-04T10:29:00.000-07:00

This came from a website that sells information called "canceranswers.com". They give some information free and then sell a report if you are interested. So far in my research, this description and explanation of cancer of unknown primary (origin) is the simplest and clearest I've found.

CANCER OF UNKNOWN ORIGIN TREATMENT INFORMATION

The simplest living component of the human body are it's individual living cells.
There are many types of cells within the adult body, but they all arose from a single fertilized egg cell implanted in the womb. This cell was "pleuri-potential", meaning it contained all the information necessary to construct a new human body. Astoundingly, every single body cell (except the sperm and egg cells) retains the total amount ("complement") of information to construct a duplicate person! This information is carried by the tiny "genes" in each cell, which are themselves compacted into a substance called "DNA" which forms the 48 chromosomes within every human cell. Normally, much of the genetic information is "masked" within cells as they divide and develop ("differentiate") from previous cells.

Only the information needed to perform their specified function is readily available. This accounts for why cells specialize to become brain, bone, cartilage, muscle and fat cells, for example. Cells themselves are arranged into network structures called "tissues", such as heart tissue, lung tissue, eye tissue and kidney tissue. The blood is a circulating tissue. Furthermore, various tissues can be further combined to form "organs" like the brain, pancreas and larynx (voicebox). Moreover, at a higher level, organs can be integrated into "organ systems" such as the respiratory, digestive, nervous, and reproductive systems. Thus increasing levels of complexity and sophistication are seen as the human develops, but every part of the body can be defined by it's cellular components.

The cells comprising a fledgling human grow very rapidly in the womb, in early childhood, and through puberty. In adulthood, new cells are only formed to replace those which have died from injury, old age or disease. The division of cells to produce new ones is under tight control by the "genes" within each cell. and if they become damaged, the cell may start dividing out of control. Cancer starts in a single cell which has become abnormal. This cells produces millions, and eventually billions, of copies of itself. The copies are called "clones". These clones fail to function as normal esophagus tissue, but instead divert resources from healthy cells to fuel their own growth. When there are about 1 billion cells, they form a clump, or "tumor" 1/2 inch across. A "tumor" merely means a swelling, it can be caused by infection, inflammation, cancer or whatever. If a tumor only grows in it's local area (even very large) but does not have the capacity to spread to distant body areas, it is called "benign" and is not cancer. If, however, the tumor has the ability to spread to distant body areas, it is called "malignant" and this is cancer.
The actual process of spread is called "metastasis", and can occur to any area of the body. It is this ability to spread that makes cancer so dangerous. Patients rarely succumb to the growing tumors themselves. Rather, cancer most commonly kills by causing anemia (lowered red blood cell count), infection (due to a lowered white blood cell count), and bleeding (due to lowered blood platelet count). We also see interference with normal organ functioning, and a general debility arising from malnutrition, dehydration, and multiple metabolic disturbances. While modern medicine can extend the lifespans of most cancer patients by partially correcting these disturbances, only completely eliminating the "malignant clone" of cancerous cells from body will cure the disease. What is Cancer of Unknown Origin?
Every cancer initially arises from somewhere. Usually, the location where the first cells turns malignant ("transforms") to start a cancer is obvious, since an enlarging tumor becomes apparent there . The location where a cancer first starts is called the "primary site". The cancer then spreads into adjacent tissues by "local extension", that is direct growth from the primary site. An example is a bone tumor extending into the muscle and fat surrounding the bone. Next, the cancer commonly spread into the "lymphatic system" which is comprised of a network of tiny "lymph channels" which drain the tissue fluid with bathes body cells with oxygen and nutrients [there is not a blood vessel connecting to every cell; instead the blood fluid ("plasma") seeps out of the smallest blood cells to supply groups of cells and absorb their waste products, and this fluid is collected by the lymphatic system]. The lymph channels carry their fluid to normally pea-sized "lymph nodes", which are packed with white blood cells.

These lymph nodes tend to occur in clusters, called "glands". They purify the plasma, killing bacteria and trapping cancer cells. When they detect something foreign in the plasma, such as a germ, allergen or cancer cell, these lymph glands swell up ("lymphadenopathy"). As an example, there are about 400 lymph nodes in the neck region and people often note swollen "glands" in their neck with a strep throat. Ultimately, the lymph glands interconnect via lymph channels, and all of the lymph fluid eventually drains back (into the "left thoracic duct" nearby the heart) to rejoin the bloodstream. The point of all this is that cancer can spread from the primary site to local lymph glands ("lymphogenous dissemination") causing them to swell, and then to more distant lymph glands. The lymph glands closest to the primary tumor are called "first eschelon" nodes, and more distant ones are called "secondary nodes" and named by their anatomical location.

Cancer can also spread ("metastasize") from the primary site via the bloodstream, since individuals cancer cells can be sucked ("embolized") into local small blood vessels ("capillaries"). This process is called "hematogenous dissemination", and can spread the cancer to ANY living area of the body. This is basically "seeding" of the cancer to fertile areas where "metastatic tumors" (as distinguished from the initial "primary site") can flourish. Certain areas of the body seem more "receptive" to trapping cancer cells from the bloodstream and promoting their growth. These areas are those that have good blood supply and complex loose fibrous networks that trap cells, such as the lungs, liver, bones, brain and skin. In fact, these environments may prove more hospitable for tumor cell growth than the primary site, resulting in a larger "metastatic tumor burden" (bulk) than the size of the initial tumor! Thus, the more obvious appearance of the cancer may well be to the site(s) of spread, rather than the area it started in. All cancers are described by where they putatively started, and the areas that they have spread to ("involved").

However, in a minority of cancer patients (5 to 10%) not only is the site of spread more evident than the "primary site", but the site of origin is not apparent at all! This is called "Cancer of Unknown Primary", (or "Unknown Origin" or "Occult Carcinoma") and represents a serious dilemma for treatment. Sometimes the "primary site" can be intuited with great accuracy. An example is when the lymph nodes in the armpit ("axilla") only are involved with cancer in a woman with high risk for breast cancer-- the likely origin of the cancer is in the breast on that side of the body, even if nothing shows up on physical exam or mammogram of that breast. On the other hand, sometimes the origin may be very perplexing and nearly impossible to discern, such as when a single lump of non-skin cancer arises on the torso, and could have arisen from any number of inapparent areas. Then the cause ("etiology") of cancer is unknown, and may either become apparent over time, be deduced from medical inquiry, or may never be known. As will be seen, many cancers which are originally classified as "Unknown Origin" will ultimately "declare themselves" with careful investigation, but about 20% will remain unsolved.

The origin of a cancer may be inapparent for several reasons. Firstly, a cancer is not generally detectable with any of our radiology procedures until it is at least 1 cm. in diameter (about 1 billion cells), but it may have spread to a more fertile area for growth before getting this large at the "primary site"-- and thus go unnoticed there. Also, the original cancer site may have outstripped it's blood supply, and died, but managed to "seed" the bloodstream before disappearing in it's primary site. Likewise, immune processes (white blood cells) may have successfully detected and destroyed the cancer when it was small at the primary site, but (unfortunately) not before it had managed to metastasize to an area where the immune system is less effective (i.e. brain or bone). Another possibility is that the whole of the primary cancer "shed" away into the lymph system and bloodstream, simply leaving no remaining cancer cells in it's orginal area. Sometimes the original site of the cancer simply dies ("apoptosis") from genetic instability or other unknown reasons. Finally, there may be tissues in the body in the wrong places (called "ectopic tissues") which resemble normal tissue counterparts, but become cancerous. Thus, tissue resembling the thyroid may be found in the ovary, or resembling bone may be found in the lung. If these abnormal areas become cancerous (as they are prone to do) then we may fruitlessly search the normal area of that tissue (i.e. thyroid or bone) for the primary site-- but there is none to be found. Thus, we can understand why a Cancer of Unknown Primary may or may not eventually have it's area of origin discovered, and also that if we successfully treat the area(s) of metastasis, we may in fact have no cancer cells remaining in the body.

The origin of most cancers is obvious, either by looking at which organ the original tumor started in or at a sample of the cancer cells under a microscope. Rarely however a cancer will be found in skin, muscle, fat, glands, bone or brain and it is apparent that the cancer started elsewhere. This is because the cancer cells found at the site of spread are different types of cells than would normally be found in that area. Even after medical workup, the site of the original, or "primary" cancer, cannot be determined. This is a Cancer of Unknown Origin, also called "Occult Cancer".

It is critical to get prompt and proper treatment for an Occult Cancer, this can literally make the difference between life and death. Often the "primary" is never found, and so doesn't become a clinical problem. With competent analysis, however, the primary may be found and treated, possibly saving the patient's life.

CancerAnswers' material explains, in plain English, the definition, frequency, symptoms, evaluation, historic and latest effective treatment for a Cancer of Unknown Origin. We tell you everything you must know to help make the right decisions for this cancer problem today.

This is just an excerpt of CancerAnswers's report on Cancer of an Unknown Origin.

First Entry

2007-09-27T10:24:00.000-07:00

I was diagnosed with cancer of "unknown primary" on August 1, 2007. What that means is that although they found 4 masses in my liver, they know it's not liver cancer (liver cancer isn't "primary" - it didn't start there). They haven't been able to find the source, where it started. It has metasticized to my liver from somewhere however!

Because it is unknown, it's very difficult to put a label on me that answers the question, "What kind of cancer do you have?" It also makes it difficult to treat.

I'm off for the second session of my second series of chemotherapy treatments in 1/2 hour, but I wanted to get this blog up and running before I left.

I will be writing about my expeiences and thoughts as we go along. More later...
Patti

Living with Cancer of Unknown Primary

CancerCompass: RE: Bile Duct Cancer Year 2010

Nexavar...is it working?

So much for that thought

CancerCompass: RE: Unknown primary cancer site

I've been remiss - on chemo vacation

Stardance : : The Official Movie Blog

Update on Molecular Analysis

Ok, I admit it...Took the Steroids!

After effects of 2nd Liver Biopsy

Nano-probes for cancer?

Nanoprobes detect and destroy cancer

Vacation of a lifetime?

I know, life goes on

more pictures

Pics from vacation in Wisconsin

Catching Up

Back to "Real" Life-

Living with Stage 4 Cancer

Made it throught the first YEAR!

Just how big is it?

Regaining Perspective

Cancer Sucks

What do you do with a slow growing tumor?

There’s no scripted way to handle cancer

When Thumbs Up Is No Comfort

Interesting Website, Interesting Lady!

Cancer Survivor Day is Sunday June 1, 2008

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

Freedom to work????

Possibility of Surgery for Bile Duct Cancer?

Write a Letter!

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

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

Epiphytic Notions: A Miracle Enveloped in a Tragedy

second Opinion Not necessary

sittin here

gotta love the paperwork

check out www.cholangiocarcinoma.org

Long time, lots of changes

Seems like a Friday

What a weekend!

More about CISCO

Cats and Dogs

Anyone ever tell you that you DON'T have Cancer?

COOOKIEEEEEEEEEEEEEEE

Wow! Guess it's been a while!

CHEMO YESTERDAY

Family Pictures

Most Hair Award

Home James

The ocean in Milwaukee

All systems go!

TGI Wednesday

Ok, Not so hot today

New Chemo drugs today

A Very LONG Big Day

Disability

Fridays are the best

Time Flew!

Best Explanation of Unknown Primary I've Found to Date

First Entry

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