dukenukem
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I hope that when it is time for Aimee and I to have that talk we can have it with the care and loving and grace that you and Ben have.
Duke
Keep pushing your team to have a Plan B and a Plan C for future treatment options.
I got hearing aids this summer. Two problems that they can’t address. First, noise is amplified as much as sounds you want to hear. Second, my brain sometimes doesn’t process words accurately even though I can hear them fine; just can’t understand them. My oldest sister has the same problem, “Saying the same words over and over, just louder, doesn’t help. Use different words.”
Duke
Sammi –
Know that there are many others who are thinking of you and your Dad and praying for both of you. We don’t post individually because others have said in far better words what we feel.
Duke
I was on gem/carbo for 7 months and experienced tingling in my toes. After I went to gem only, in about three months the tingling had reduced significantly.
Duke
Carl –
I know that someday my wife will feel the same as you. If I could, I would tell her then that this is something I need her to work through. Even though I could not be with her physically, I would be with her spiritually. Our kids need one parent to carry on, To be there when they get married – to play with grand children when they come. She has so much yet to do with her life. Maybe that will be your new contribution – providing support to other surviving care givers.Thank you for your past efforts and I look forward to what the future has in store from you and for you.
Peace
Duke
I went from carbo/gem for about seven months, to gem alone for about seven months. We floundered for about three months before starting on FOLFOX6 last week. Platelets continue to be limiting for me. Not only is the chemo hammering them, but my spleen seems to be trapping them. A double hit.
Have you had genomic testing done to maybe guide you into a trial?
Other internal links to detailed posts from Percy. A wealth of information, slow reading, but definitely worth your time.
http://www.cholangiocarcinoma.org/punbb … 877#p70877
http://www.cholangiocarcinoma.org/punbb … 198#p57198
Fight hard against the desperation – live life to the fullest you can – treat every day as a miracle and a gift – make the most of it.
Duke
I think I’ve come across a previously unsuspected trait in the family – “naughtily nice” – and, to make it worse, they are unrepentant. Of course, in Lainy’s case, maybe not unexpected. But we had such high hopes for Gavin, which is why his branch is across the pond to keep it untainted. Oh well, “naughtily nice” is the new standard.
Duke
Thanks for all your support. It’s time to get back to better things.
O frabjous day!
Callooh!
Callay!Guess who had
a great
birthday?My daughter and her BF came out. Had a wonderful visit, great lunch, and saw a good movie – “Interstellar”. Interesting plot with excellent computer graphics. Many shots were reminiscent of “2001: A Space Odyssey”. Not bad considering 2001 came out in 1968. It truly was ahead of it’s time (and not just by 13 years).
Have we all got our lists sorted by naughty or nice?
Peace.
Duke
I had to talk louder than he did a couple times, just to make a point. Even told him not to be condescending. He said he wasn’t, just that he knew more than I did.
Overall, might have been better off with a doctor who knew nothing and recognized that and sought help, than one who thought he knew enough.
In the long run, not sure how much difference it would have made, but this underscores the NECESSITY of getting an informed second opinion quickly. Patients can’t think of it as just a good idea. Folks, this is our lives we’re talking about, not just some theoretical abstraction. Don’t settle for second best – demand and expect excellence. I know I spent more time researching the purchase my last new car than I did picking an onc and treatment center. I’m probably not alone in this.
Getting a second opinion is in our power. But how do we get these doctors educated, especially when they think they already know enough? Maybe they did 5-10 years ago. It was obvious he had written me off as a dead man walking, but how do we get to others who might be more receptive? “Rare cancer” should not be a death sentence. It sounds like what I have interpreted that some outside the US have said that if you are not curable, they treat the symptoms, hope for the best, and concentrate their time and energy on those they might save.
If this wasn’t so personal, it would almost be funny.
Thanks for listening, my friends.
Duke
Just found out today:
My niece’s lung cancer is Adenocarcinoma, she had a scan today, the tumor is shrinking, good news. Not so good news is she has a tumor on her brain, they are waiting for confirmation of treatment from her medical insurance, hopefully the first of the week and have a gamma knife procedure soon after that with good results expected.Scary thing is that her mom and I are the tall, skinny blondes of our generation, niece is the tall skinny blonde of my nieces and nephews, and my three kids are tall, skinny blondes.
Julie –
Somehow, you have to regain your confidence. You have fantastic insight to give others, you need to listen to yourself, too. Passing on the dinner is a great example, so you still have it – what would you say if I told you I was worried this would be my last Christmas? Now listen to your advice and follow it.Duke
There are two things I like about having a plan:
1. I know where we are going and what’s going to happen next – like having a map instead of just driving aimlessly and hoping you get where you want to go.
2. I can follow our progress and know what’s going to happen next. I’m all for spontaniety, but it has it’s place. This is not one of them.Duke
There is debate about which is better – CT or PET or MRI. Would they consider doing the other type of scan? Maybe a sonogram/ultrasound?
How often are they planning the blood work? If you decide to go that way, get them to commit to a definite set of action numbers – if this parameter reaches xx, then we will do xxxxxxxxx. The doing could be a scan, more frequent blood work, or something else. Or maybe a couple parameters need to reach an action level, not just one. Being an engineer, I always wanted action numbers in advance rather than making it up as we went along. Takes away all the “discussion” in the heat of the moment – everyone has agreed what to do and when.
Porter – I read your first posts. You have come so far and are so much stronger than you were a year and a half ago, it’s incredible.
Read your “signature” – “Hope, love, strength…2013 and for the years to come, Porter.” This looks to me like a little speed bump, certainly not what you had last year. Your standards and expectations are so much higher now than they were because you have been to the top of the mountain and know what that feels like. You are by no means back in the valley. The team has a plan, I’d say follow the plan. They are not closing their eyes to your condition. As for the holidays, I was overjoyed last December when my scan showed that my main liver tumor had shrunk to 10 cm – it’s a matter of perspective.
Action Plan:
1. Let your surgeon review the scans and hear what she has to say.
2. Ask whether other scan types may help define any conditions.
3. If she has no issues, set up a schedule for blood work and what to do if certain levels are reached.
4. Enjoy your family and the holidays.
5. Get your next scan in February and act accordingly.Duke
Well, it’s 3:45 in the morning, but I’ve frequently had trouble sleeping after a chemo, so this is not a surprise. I have to get used to the fact that I am wider than normal with the pump on my side – keep bumping into things. And which side do the cats want to lay next to when I’m on the couch? Moving it to my stomach doesn’t help because that is their favorite spot – warm and soft.
Cillie – you see that you can always come here for support. Your third paragraph matches me pretty closely, although I try to offset my “black” humor with outright silliness at times. If I can get someone to smile, it’s a good day.
Duke
