kellewis

Hey there everyone!
Soooo very much has happened since my last posting. Boy oh boy, it’s been a roller coaster ride. A new roller coaster ride. I hopped off the other one, and onto a longer, dippier, heavier duty one!
So after they did the CT guided RFA back in late May of this year, they felt really confident that they got everything that may have been the CC coming back into my liver. They wanted me to get a follow-up CT Scan w/Contrast done in July just to be sure I was “healing” correctly.
My doctors called me with surprise in thier voice when they told me I now not only have way too many “tiny” little milky-way type spots in the left lobe of my liver but I also have a new lesion measuring 5cm in the right side of my liver and 3 lymphnodes involved as well. I am no longer an option for surgery of any kind.
So now my Oncologist has me on “palliative care”. My surgeon initally made everything sound like I had just a few months left. But my Oncologist is hoping to give me two years (I’m hopefull for more of course!) by doing chemo.
I’ve been doing Gemzar-Taxol-Avastin since the later part of July. Initially she wanted me to do 3 weeks on, 1 week off. But after my second treatment, it was very apparent that wasn’t going to happen. Knocked me on my behind in a big, big way. My WBC’s, RBC’s and Platelets dropped out of the bottom. I spent 5 days in a neutropenic state, with daily transfusions. Platelets went the lowest down to 3 (as in 3,000). I had no go-juice in me what-so-ever!
So she decided 2 weeks on, 1 week off. Well that didn’t work out so well either.
I took a break, because it’s really about my quality of life, as I see it and went to Hawaii with my entire family for 10-days. Time stood still while I was there. I didn’t realize how much so, until I got back late, late at night only to go to chemo the very next morning and start again. I thought having 3-weeks off would be good. Charge me up and get me ready for another go around.
But chemo was last Thursday and again, my platelets have dropped to the point of needing tranfusions again. But now I’m developing antibodies and soon transfusions won’t be an option. Has anyone else experienced this?
I wonder if transfusions from my family members would be better? I plan to ask my Oncologist about that one.
At any rate, now I’m doing chemo at 10% reduction, once every two weeks.
My Oncologists hope is that in doing this chemo, it will ultimately stop the cancer from growing at best for a good while (yep, I’m pretty much hoping that too!) but if nothing else, she hopes to slow it down. She said I can have another CT Scan in two months to see if it’s working. The waiting is the pitts!!!!! That’s two months of my life, we could be trying something else, if this ISN’T working, right?

So sometimes I feel like I’m okay with what I know. That life is going to be short for me. And honestly, I think most times, I’m okay with it. I am soooo incredibly grateful for the life I have, the family I have, the friends I have. Life is wonderful. Truely.

But here’s my biggest problem in dealing with all of this…..
My one and only son. My heart. My reason for living. He’s going to be 21 early next year. His father is in the picture, but they don’t live near one another. And I wouldn’t say my son is really close to his father. For years I guess I secretly felt like that was a good thing. I know I’m bad for admitting that. But I have my selfish reasons.
The thought of leaving my son’s life is the most difficult part of all of this. I think of what a mess I was at his age, and beyond. And how I wouldn’t be the person I am now, if it hadn’t been for the love and support of my parents. And knowing I won’t be there for those hard, really hard times in his life, that we all go through. Knowing I won’t get to see him get married (he’s not in a relationship at the moment), and I won’t be there for his first child……. man oh man……. this is the absolute toughest for me.

I’m grateful, because I have this chance to “prepare” as they say. And I’ve had more years with him, that other parents have had with thier children.

But it doesn’t stop me from feeling what I feel.

Suggestions? I’d love to hear from anyone who has lost thier parent, what they might have wanted or wished for. Or how any other of my fellow CC’rs are managing with it.

This really is the hardest for me.
Another long winded one! Guess I seem to “save” up and then vent, eh? This site really is a wealth of info for me and just as importantly… for my family and friends who have tons of questions I don’t really know how to answer. And they usually find their answers on here. I’m really grateful for this website. The info, the encourement, the sense of “being in this together”. It doesn’t feel so lonely.

– Kel

Stacie,
Thank you so much for the links and the info on the chemo therapy.
That’s exactly why I’m pushing my current Oncologist to fully diagnose me with CC. As I mentioned earlier the Doc’s at Stanford are 93% sure it’s CC and she doesn’t seem to want to entertain that idea at all. Which I find very frustrating because of the chemo treatment alone.
And you’re right….. two weeks ago I had my first cycle of Taxol / Carbo and my hair is steadily falling out.
With 5FU, it’s my understanding everyone is allowed a “lifetime” dosage of no more than 500mg. And I had 300mg back in 1990 during my fight with Breast Cancer. But I will certainly ask her about having the Gemcitabine along with the rest of the 5FU. She wants me to do 3 rounds of Taxol / Carbo before we try something else. And her reason is because she isn’t 100% positive of just what kind of cancer I DO have. Frustrating, frustrating, frustrating!
And the diet link…. thank you! My way of thinking is, everything I put into my body at this point is going to make my liver and bile ducts and etc work that much harder, taking away from it’s concentration to fight this cancer. So it’s hard to eat and yet I know that’s a necessary thing. So I will definitely check into your link. Thank you again!
On the Avemar, I plan to see my naturopath next week, and I’ll mention it to her and see about getting on it myself. She has me taking three other natural herbs that have been proven beneficial in stopping the tumor in my liver from growing, if not reducing it. So we’ll see what happens.
This website is awesome! It’s been a wealth of info and support for me and my family!
Thank you,
Kel