ccactive123
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Why do these posts show as 3.20 and not 3.22, the real date which was 2 days later? I’m confused enough already.
Jeff
Eli
thanks. I’m probably tired. Can’t make it work just yet.
Right-click image file
Select Edit… to open Paint
Click Resize on the toolbar
Enter the desired size in pixels
Save as a new file
Did all that but now the pic is a tiny square up in the corner of a huge white page and won’t transfer over. I will try as if it doesn’t work, I’m sure I can re-do it.Jeff
it’s 34.2 KB and looks like an ant on a garage door. This can’t be right. I’ll try again tomorrow.
Eli
thanks. I’m probably tired. Can’t make it work just yet.
Right-click image file
Select Edit… to open Paint
Click Resize on the toolbar
Enter the desired size in pixels
Save as a new file
Did all that but now the pic is a tiny square up in the corner of a huge white page and won’t transfer over. I will try as if it doesn’t work, I’m sure I can re-do it.Jeff
Peggy,
I hope I wrote you back. I found a fragment with “Dear Peggy” and have no idea what it is.
Did I write you?
Jeff
Darla,
In our culture, we say, think and know so little about life, death, breathing, standing, sitting, walking, chewing, elimination, sex, thought, feeling, etc.- all the basics of life and things that matter. We know tons about what drug some idiot star is on or what shoes Miss So and So wore at the Moron Awards Show. It’s all upside down. So-called ‘primitive cultures’ are the opposite, so who is really primitive? Here, progress looks more like lunacy.Your words are invigorating and I thank you for them. Your husband is like many- it comes so quick, you barely have time to react. I’m no expert, but I believe many just die and never even know they had cc. Of those that find out, their doc calls in the family and they are told he has months to live and then he dies in weeks. Not many get early notice. Mine was one jellybean-shaped mass at 1.8 cm. (good to be under 2) at 2.3 cm. away from the pancreas (good to be over 2) on the outside of the common duct leaning into it. That’s why I had fat malabsorption I mistook for food poisoning. The jellybean was resected by an expert who said that appeared to be all there was (the large vein and small nerve involvements came from subsequent pathology studies). I asked what if I were a rich guy travelling and in Bora Bora, Pago Pago and could take 45 or 60 days to get to him instead of when I did. He just shook his head. For me, it was I’m dead in 50 days or doomed to die soon without the Whipple right away.
Most of my life cancer was discovered at some point and took people down slowly. CC is a fast actor and often affords little time like your husband’s experience. It’s also rare and therefore unknown in large part. When Dr. Hong from Harvard and his team saw me, he spoke so well it was like a speech written by Winston Churchill. He said there’s tons of info on bone, brain, breast cancers, lung and liver, everything but cc. He said there are so few cases and fewer still that last long that there’s no real knowing what adjuvant treatment works or does what- it’s all educated guessing. He wanted me on giant hits of gemcitabine and cis-platin with radio with folfiri at something like 80 sessions total. I was flabbergasted. Then I found it really was guessing and called him back. He conceded this is what he would do in my condition but that he could not say anything with the authority he could on almost everything else cancer. Cc is even more mysterious than it is deadly. I didn’t want to spend my days, many or few, vomiting into a bucket at bedside and then finally dropping dead. I saw my father do that, and it sucked.
You know the old expression that cowboys die with their boots on? I’m going out in a handstand. My coffin will be upside down- that’s the way I want it. CC may come back and kill my body (something has to eventually), but it won’t kill my spirit.
I’m inhaling in the positives as fast as you can churn them out. Thanks,
Best, Jeff
Hi Eli,
Your wife is the very first cc, Whipple, Extrahep, T3 so far! I thought I was alone. Not too many of us I bet. You are a hero in what you are doing for your wife. After the Whipple when I was weak, I could barely do or think anything. I was so diminished. My first shower took me 2.25 hours. It was a Manna, not a handstand, but a very minor point.
You sound very educated and thorough in your approach to your wife’s situation. I am grateful I’m so much at an extreme and not in the thicket of decision-making forced upon you and your wife. It would be so hard to figure out what to do! You don’t know if you’ve made a good choice before or after you make it. Throwing darts by contrast is great because you can see how well/poorly you did. Her being so fit really helps, but cc is so powerful that nothing can overcome it if it rears up to get us.
With a 13 year-old, as I wrote just a bit ago, it’s different. Then, extension of time means a lot and I can see going thru a lot of agony to spend more time with a growing kid. Then, quantity does indeed more or less = quality.
I sure learned a lot from you about the Canadian medical system. Some good and some bad. I see why very rich Canadians are down here buying instant Whipples and so on. I have had MRI’s, CATs, PETs, some with contrast, etc. It seems the PET with contrast is very valuable and I’m grateful that 12 minutes away from here is one place with all those machines and very nice people running them. Everything is good- except the price. One PET was billed at $13,900 and I’m still fighting my insurance company over it.
You are smart and I appreciate your technical advice. It’s right on and easy to follow.
I will keep writing until I can’t. This site is great.
Best regards to you and your wife,
Jeff
Hi Lainy,
What a delightful post. It is truly a great group. A friend, a professional writing teacher and coach, says I AM a writer and a good one, but as one who never took a writing course, I don’t call myself one, I just open the gates and try to be truthful and fearless. Sometimes it comes out surprisingly well. I wrote a few short stories mostly about my youth just to feel what it once felt like, and odd as it is, they are most enjoyed by writers! (those without bloated Hollywood egos, that is).
I cringe at the idea of a Whipple that needs redoing. My guy did those plus took rejected cases from Johns Hopkins, ones with things twisted round each other, etc. We all want top people helping us from dog walkers to accountants to caterers, but especially SURGEONS and most of all anyone doing a Whipple. Imagine a so-so Whipple. Ugh. Thanks for Teddy’s full story where I get a sense of time- so helpful. 6 years is a good stretch and 78 is up there anyway. To die of something when old is inevitable; to have cc at 14 would be a real bummer. I see his golf as his meditation. Good for him. Realism balanced with optimism is exactly where I try to position myself. Email you? Here? Is there a separate address? Why do I often with computers feel like Grandpa struggling with a TV remote in 1959 only his grandkids could operate?
Best, Jeff
To all: I am so inept with computers I have sort of lost my way around this site. I think I just posted something thrice asking how to post a facial photo. Sorry. So I don’t have to scroll up and down like mad, I am copying the incoming messages to Word and then responding and then copying back over to the site. After the Whipple, I could not have found the right keys on the keyboard I was so scrambled.
Now, about the message from Randi earlier- There should be a room where we Whipplers meet, a condition all its own. Hope yours was OK (they can never be great). The dreams I had in the first week after? Wow. Name me a more invasive, destructive surgery. I have this diagram of it I got at Harvard Med. When I show it to someone, their eyes dance and spin and buzz they are so taken. It’s actually fun to watch. Only for those with strong constitutions.
To Pam- thank you for your kind and sweet words. A distant friend was DX with brain cancer and began treatment. His wife says all he does is sleep. The docs are happy with his ‘progress’. I’m confused. If he gets better, fine; if he stays in bed 100 years and then dies, what was good about this?
You know that scenario of: What if an asteroid were to hit Planet Earth in an hour or a day or 10 minutes, what would you do with the time you have left? We all live that anyway, but we ccer’s really live it close up and personal. I’d do many of the things I do anyway but with a kind of full-out, nothing left to lose gusto, and that’s what I do.
I guessed your daughter here is the cc and not you. That’s a special condition all its own, a very tough one. It’s devastating for parents to see their adult kids sick, goes against this feeling we are always their protectors and somehow should be doing more. If I die and meet god, believe me, I have plenty of questions. I don’t need a written list; I’m thinking about them all the time.
Best to you,
Jeff
Hi Liz
This is so ironic. I never encounter people of much substance on the Web and thought it was just stuffy, perfectionistic me. I don’t use face book and disdain those glued to their screens all day. But this site has turned me around. I can barely cook dinner for want of seeing the next exciting post! How can such a good thing come from such a bad one? Sweet irony!
Mine was distal; I can’t recall if that was a good or bad thing now that you bring that up. The 2 actual mets in the liver are worrisome. The dispute between experts is what I’ve come to expect around here. The having children thing does change how we approach this and there is a reason to stay around longer with growing kids. These days when I see a kid, I can’t help think about how much time they have ahead. About this, there is the Temporal Forward Wall as I call it. Most of my life I thought of myself in the middle of time so to speak like I think of myself in the middle of space. Who enters a room and then clings to the wall on the right? We all kind of gravitate toward center. But now I feel like I’m in a time tunnel with the end of [this] time rather close up front, sort of like a windshield about to hit me on the nose. Kids never feel that way or think about the subject at all. We were all kids once.
Your coverage sounds great! I’m happy for you. If the MRI sees no mets, how do we know they are there? What is his CA 19-9?
To reply to the adage in green at bottom, I would offer: Some of us walk on water; I just plop in and start swimming.
Jeff
Hi Gavin,
I appreciate your liking my writing style and sense of humor; writing and humor are giving life depth of meaning and may even help save it. To be glum and shut-down would be further insult and likely deadly. Bad jokes seem somehow great in some other terms later on. Good jokes fade away more quickly having done their work at the time.
I have to admit the posts from the UK and related areas are extremely delightful. There is an appreciation of English language and other civilized things often absent here in the USA. For decades, I felt I belonged in Western Europe more than here. You should hear what our nutso pundits say about Western Europe! They decry it, you live it, and I love it. Hope to get there sooner than later.
Jeff
PS Now I see why there are two pages; one follows the other. Nice to be growing again; here I thought my last growth spurt was at 16! Thanks for everyone for answering technical questions. I’ll be sure to have more.
Thanks Eli
My 2 photos are 1.2 MB and 330 KB. Any idea on how to reduce them to acceptable size?
Jeff
Smarties,
Who knows how I can add my photo to my signature? I promise to keep all impressive yoga photos out of it (for a while at least).
Jeff
Smarties,
Who knows how I can add my photo to my signature? I promise to keep all impressive yoga photos out of it (for a while at least).
Jeff
Smarties,
Who knows how I can add my photo to my signature? I promise to keep all impressive yoga photos out of it (for a while at least).
Jeff
