harmony
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Kris is a warrior – I have faith in her. I’ll be sure to offer up prayers for both Kris and her surgeons tomorrow.
Kris – YOU CAN DO IT!!
DREW1978 wrote:Mom,I love you BIG much and I think of you every minute of the day. You are so strong and I support you in whatever decision you choose. I may be thirty one Mom, but I still need you.
God never gives you more than you can handle. Right???
Get some sleep,eat good food, take a bubble bath, put some comfy’s on and watch a good movie. Funny that’s somthing you tell me all the time. I can still hear you singing to me, getting me up for school. You are my rose. Goodnight, sleeptight…
Love,
Your baby boy (okay 6’3 and 200 lbs does not constitute baby) but I love you.“To thine own self be true.”
I hope that when I kick the crap out of my cancer and my son grows up from the little 4 year old that he is into our age (I’m 31 as well), he blesses me with the absolute love that you’ve shown your mom. Just thinking of how wonderfully loved your post must make her feel brings tears to my eyes. Good on ya, man.
Rick:
We’re in a similar situation. I’m 31 with a 4 year old son and a wonderful, wonderful husband. I was really freaked about dying and leaving behind a son that wouldn’t remember me and a husband that had to either raise our son alone, or find another partner. The feeling sucks.
I dunno though – since I’ve been on my chemo and have been achieving such wonderful response, those worries seem less and less. Thinking about leaving a “legacy” for my loved ones now makes me feel sad and questions my strength and the power of God. Your miles may vary, of course. If you’re really worried about your kids knowing what a great father you are, go ahead and leave them video messages or notes or little physical reminders of you. Same thing goes for your wife. If you feel like once you get started and it makes you feel bad, well, maybe that’s a sign to you that you’re not in the right place to create something that revolves around your death. Maybe you could take that time and instead go make a memory WITH your family. Have a great family outing, something that you all enjoy, generates good feelings within (which is a great boost for healing), and then gives your family something to remember when you’re ALL happy.
Everyone is different; you might have to try a bunch of different things to find your right answer, the best thing for you and your family. I wish you nothing but peace no matter what your decision, and on top of that, a nice generous dollop of hope and strength. Keep fighting – you’ve got three very precious reasons to live, and frankly, this crappo disease needs as many happy endings as it can get.
Harm
Hi Laurie:
So sorry to hear of your diagnosis. Frankly, I’ve learned recently how quickly cholangiocarcinoma grows, so it’s not surprising to hear that physicians so frequently tack on such an ugly prognosis. I’m much like you, diagnosed with a large liver tumor, but largely asymptomatic.
There are so many people on this board that have outlived the prognosis given, and there’s no reason why you can’t either. Statistics do not take into account the human factor and the power of God. They’re always changing, and by the time new statistics are published, the data is already outdated. Therefore, I have come up with this most scientific of conclusions: statistics are stupid. Ignore them.
There are so many different chemo combinations out there now, and I honestly don’t know why some physicians choose one over another. I’m on a combo of Gemsar and Cisplatin, but there are so many other drugs out there. Some combos work for some and not for others, and it seems sometimes there’s no rhyme or reason to why. Cancer, he’s a crazy little turd.
Deciding your treatment plan is such a personal decision, but I second the recommendation of those that say when you feel like your oncologist is gloom and doom and doesn’t seem to offer you a whole lot of either options or hope, go get yourself another one. Act like a consumer. You are spending money on healthcare, so get the most bang for your buck. Find a physician that is fighting right alongside you.
Thanks for the warm welcome, all. I want to be positive – if I keep it up, I really believe it. Not everyone is into prayer, but I am, and it helps me. I don’t believe for a second that God “gave” me this yuckiness, but I do believe that He’s re-purposing this business into something positive for me. I’ve learned a lot from this short journey so far, and every day I get more out of it.
I’m from Austin, TX, and absolutely love it here. I had the option of moving my care to MD Anderson when the diagnosis was made, but to be honest, I was so blessed to be introduced to an oncologist here in central Texas who is considered a rock-star and my surgical oncologist completed fellowship with MD Anderson and was chief of surgery at UT Medical. They’re both side by side with me in this fight, and are willing to be more aggressive than the norm. I agreed in my mind to give them first crack at me – if it didn’t get better, I’d be moving on. But it has gotten better, and more than what they were expecting. So, they’ve got my business.
Kris, Kombucha is just fermented tea – a raw, usually organic beverage that is basically a feel good tonic for me. The fermenting process gives it a great quantity of polyphenols, antioxidents and probiotics. In addition, it’s a great detoxifier, and since my liver is dealing with both cancer and chemo, I wanted to help it out a bit and see if we can get the leftover chemo out of my body as soon as I was done using it. I drink it every day, just a 16 oz bottle – the flavor takes some getting used to (almost a cross between hard apple cider with some vinegar thrown in), but I’m hooked. I have no clue how much it actually does for my body, but yep, if it might help, I’m willing to give ‘er a whirl.
Ok kids, I broke my own rule of not jacking around with cancer unless it’s cancer-butt-kicking day (chemo day). So I’ll be back on 3/19, my next chemo, to check back in. I really do peruse this site while I’m sitting there all freakin day loading up on poison and 2 liters of IV fluids – sweet that infusion has wi-fi. Today is my son’s 4th birthday, so I’m going to pick my little pirate up from school and live some more life….at least till it’s bedtime.
Really, God bless all of us. Every day I fight, I fight for all of you, too.
Hi Kathy:
I have to say, I think we’ve all been surprised with how well I’ve at least handled the Gemsar/Cisplat combo. I have a port and my cycle is currently 2 on, 1 off. So I go in two Fridays in a row for my infusion and then have a week off. Pretty standard, from what I understand. My two largest side effects have been heartburn (which is incredibly well controlled with a Protonix scrip) and insomnia the weekend of chemo (again, thanks decadron). Basically we’re doing 3 cycle rounds. After each 3 cycles (6 treatments), we’re re-evaluating what’s happening. My oncologist noted that the second set of 3 cycles seemed to have more of a cumulitive effect on the cancer than the first 3 cycles, so we’re hoping this round (which ends April 16) will do even more. I guess we’ll find out.
Of note, my tumor markers were always on the low side. Highest I ever had for CA19-9 was 90. Right now I’m hanging at 40. Eh, it’s just a number, as long as it doesn’t go up, I’m happy.
I have to say that I’m living life just fine as it is. I still work full time because I like it, I’m an active wife and mother, and aside from not having quite as much stamina as before, I feel like I’m doing ok. I had chemo on Friday but on Saturday I was totally fine to run errands all day, take my son to a Dr. Suess b-day party at the library, and then a dog expo right after. I work out on the treadmill 4 days a week, speed-walking. I’m hoping it helps to keep extraneous fat off and maybe I’ll see an energy boost to combat some of the mild fatigue I sometimes have. It’s all a big science experiment to me right now, because hey, I’m willing to throw just about anything at it and see if it sticks.
