Back to "Real" Life-

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

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

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

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

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

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

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

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

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

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

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

Enough for now, I'm burnin' daylight!

Living with Stage 4 Cancer

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

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

GUIDE FOR FRIENDS AND FAMILY

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Made it throught the first YEAR!

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

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

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

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

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

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

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

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

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

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

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

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