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It was a great Christmas. My older son set up a Skype account and we tied her in with video and audio. Even made a replica of her with an iPad for her head in a hoodie, elf hat, sweat pants, gloves, and slippers. All that was missing were the hugs.
There was one surprise. Out of nowhere, someone unexpectedly cared. It was totally out of how I had previously characterized that person. Just goes to show that there are hidden depths to everyone.
The family knows about the CC, just not about this forum.
Question – when do people transition from the Introductions Board to General Discussion?
Merry Christmas to all and to all a good night.
Merry Christmas! Thank God for technology, huh? Almost as good as being there, but without the nasty germs.
You have a great attitude. And, yes, reactions come in all forms, from really wanting to help to lip service, to running as quickly as they can!! lol
I got a lot of (head tilt)… I’m sorry. But you don’t LOOK sick! The head tilt is the worst!
I still, after almost 3 years, haven’t figured out WHEN to disclose… I’m single and attempt to “date” so it’s hard. I don’t want to waste someone’s time, but I don’t want to disclose to a stranger who isn’t going to be part of my life…..
Don’t take these reactions personally. And tell your wife to try not to, also. It’s their loss, and their shortcomings. It hurts, yes. But better to find out now than when you might need these people.
Have a great holiday despite the “crud” and my prayers are similar: that we get a cure, or at least a possible cure, in 2014!!!Hi Duke and Family and no matter the circumstances you are here, you are are well and Merry Christmas! As to the way people are acting you are the normal one! A great attitude goes a long way. People really just don’t know how to act about it. That is their problem NOT yours. Honestly the words you post lead me to believe that you have actually accepted. Nothing to be ashamed of. I am so very proud of you and I prefer to call it accepting with dignity! Keep up the great work, don’t worry about others and I love your attitude, so much better than wasting bad energy that is need to get well! Sorry about the flu but it seems a whole lot of people are getting it. I wish for you and your family a healthier New Year! P.S. You are neither a victim nor a martyr….your are a survivor and a thriver!
Merry Christmas!
Results from CT scan were great! Tumors continue to decrease in size. Also, alkaline phosphatase has decreased to 127, almost into the normal range – down from over 800 when this began. Doctor was happy and chemo will continue. Will get a check on CA 19-9 in January.
Platelets were too low to take chemo but that’s only a week delay.
Have experienced a new reaction to my cancer – not exactly denial or rejection, but inability to deal with it so it’s ignored (best way I can describe it). Some people see me as a walking dead man so they start to pull away. This has probably affected my wife more than me – I just keep on, but Aimee takes it personally.
Another strange reaction. I’ve been told that I could come across as a victim/martyr because my attitude is positive. I can’t be really sick because I look/sound so healthy.
Do I just know some strange people or are these common reactions?
My daughter has a severe case of crud – her doctor said she is very contagious and should stay far away from me. Bummer at Christmas – first time the family will not be together. But we will Skype to make the best of it. Just another incentive to fight like hell to make sure we have Christmas 2014 (and many more) together.
I haven’t told people that CC has a lousy outlook. My family is fairly internet savvy, plus my nephew is a doctor. I’m sure they have put two and two together but no one mentions the elephant in the room (sorry to mix metaphors).
Thanks for listening and I hope and pray we’re all here next Christmas.
Hey Duke, always reminds me of John Wayne and if there was ever a fighter it was him, in movies as a cowboy or a soldier. But you may be too young to have seen his pictures! LOL Humor is the best Medicine and it’s true. My Teddy and I used humor all the time. And Kris above is a natural.
Congratulations on your Scans, best Christmas gift ever and the New Year I am sure will start off the same way.
May I ask if your family knows anything yet about the CC? Or did you just mean the forum. Continued great luck and we are glad to have some more humor aboard, anytime!Duke, your humor is what will get you through this! As I stated before, I am single. When I date, and I get to the disclosure part, I say if they want a short term committed relationship I’m a good choice. I’m a bad bet for a long term one. Some get the humor, some don’t…..
Obviously I don’t date much! ;-/And what wonderful news for the holidays!! I hear some happy New Year celebrating on Jan. 3rd or so! (After chemo!!)
Hi DukeNukem,
That’s wonderful news about your latest scan! So nice of your doc to not keep you hanging.
I respect your need for privacy. For many, its natural to protect your loved ones from your anguish and fears and causing them worry. On the other hand, nobody can put on a positive attitude ALL the time. Everyone going through such a life-altering ordeal needs somewhere to vent or ask questions of those walking in similar shoes. I am on the “outside” since it’s my sister who has the cancer. (17 months since diagnosis and she is doing well though stage 4 ICC). There is no way to know what it feels like to have such a condition but I’m doing my best to understand what she is going through and try to give her the support she needs. She doesn’t want emotional drama, so I do my crying privately and regularly. Sometimes I worry about her emotional health because she has not sought a support group or blog, or therapist. How she copes is her personal choice so I simply support her using info and tools I’ve learned from this great discussion group.
As for long term survivors/members of this blog, there are many! Some don’t post often but I am glad a couple of them (Kris and Lisa) have lifted your spirits and given you hope.
Merry Christmas and congrats again on the good news ! WillowFirst things first:
Just got a phone call from my doctor (yes, 9:22 at night). She had the results from the CAT scan I had yesterday – the tumors are continuing to shrink! Next chemo is Christmas Eve and then New Year’s Eve and they will be days of rejoicing.I guess joining a discussion forum half negates the privacy label. Maybe isolated is a better word now. I talked with a few coworkers who have cancer. They understand in ways that no one without cancer can. But, I have not told family members I have joined this forum. Maybe because I can say things to you that I can’t to them. That has to change, but one step at a time. And, I have the advantage of being able to take days to word-smith what I write to say what I mean.
I have learned things about myself that I would not have otherwise without CC. From what I have read, this is fairly common.
DukeNukem was a PC game from the early 1990s – first person shooter. Crude by today’s standards, but the name stuck with me.
My humor dealing with CC impresses my co-workers, even though it has gotten darker. I joke that not only hasn’t my oncologist told me not to buy a 2014 calendar, she hasn’t even recommended that I buy one on the installment plan, a quarter at a time. (What I don’t say is that she hasn’t told me it would be sound investment either.) Being engineers, these people automatically translate a double negative into a positive without hesitation. Response from Jim was “You’re sick!” But, that was exactly the response he would have made before CC. He understands that life goes on regardless of speed bumps and pot holes.
Two people who are 3+ year survivors has done wonders for my mind! Thank you for the gift of hope.
Hi Chuck –
And as everyone else has said Welcome to the Family…..or the roller coaster ride depending on the day. I have said several times that this is not fair to any of us. This is my husband’s second battle with cancer in his 50 years. Thankfully the first one was Hodgkin’s lymphoma. And at the same time my husband was diagnosed with the cc, our youngest son was diagnosed with thyroid cancer so I cried and yelled a lot for my family.
I think everyone get scared and upset by cancer, no matter what the cancer and who they are. I would almost say you were abnormal if you didn’t. Even my husband who is the most positive and upbeat person who never lets anything get him down has had his moments. A few weeks ago he up and decided he was done with chemo….no more and had the whole house in an uproar. He was 5 doses into 12 doses without even having done the halfway scan. Then the next day he was fine….acted like nothing had happened.
It’s a crazy disease and so traumatic to everyone involved in it.
We have started doing things a little differently in our house. We take it one day at a time. We live in the moment and I take lots of pics that not only show our journey but keep the memories alive.
We have our first grandchild who thankfully lives with us and has been a blessing to all of us but Grandpa wants to be there for all of his firsts.
Good luck with your fight and remember we are all hear to listen.KrisV
Dear DUKE, WELCOME to our amazing family, another fabulous sense of humor guy….that will help you get anywhere. It really works. Heck, who wouldn’t be scared. What is this horrendous monster that we cannot even pronounce. That reminds me that perhaps it’s time for Teddy’s name story. We went out with a couple for a wonderful Italian Dinner. Teddy was not real good on words and sometimes even made up his own, but we never laughed at him. we did howl later. Anyway he was wearing his CC bracelet and our friend Rocco (yes T was also very Sicilian)Rocco says, “Teddy what does your bracelet say”. T says ,”Oh that is my Cancer, it’s called Angelo Carcinoma!. Leave it to him to make CC Sicilian!! We found so much humor in everything and it was the best RX from the beginning. His philosophy was OK now we know what’s wrong lets fix it!
We unfortunately do not know the whys although we have some pretty good guesses. There is just not enough research, do not have the funding or workers and CC hides for years before rearing its ugly head. We all have our pity parties and I guess the size of the party depends on if I am using kleenex or paper towels. Hospice is wonderful for the patient and the family. No fears there. Know that you have come to the right place and sooner than later you will be getting some answers. Be strong we all care very deeply.Hi Chuck (Dukenukem) love that.
At first I hesitated to reply to this post as my husband passed away 5 years ago from this disease and you don’t need to hear that. The good news is that I have seen so many advances in the treatment of CC in the past 5 years that I am hoping for you to do well.
My situation is so much like yours. He was 62 and I have two sons and a daughter-in-law, but also no grandchildren. In his case it just was found way too late and he never even had any treatment options at that point. He died less than 2 months after his first time in ER when they had no idea what was going on. I guess the good news is he didn’t suffer long, but that is no consolation. When I start feeling sorry for myself and saying why me? Why us? I try to tell myself to snap out of it and think about those who have it worse than me. Doesn’t always work, but I do try.
I totally agree with you that it is not always about me and hopefully I can do some good here and help someone else. I’m sure you will too, but there are days that it needs to be all about you, too.
Unfortunately, I have no answers for you as to treatments or hospice as we never even got that far.
Just wanted to let you know I understand your feelings and hope for the best for you and your family.
You have come to the right place as there are a lot of caring people here who are more than willing to listen and try to help in any way they can.
Love & Hugs,
DarlaHi DukeNukem,
Love the name! Welcome to our site, but sorry you had to join us.
I am almost 3 years from diagnosis. I have never heard subtype in a diagnosis, but I will bet Percy or another knowledgeable person will chime in.
As for chemo: I started in Gem/Ox and FUDR (in the pump) but had to discontinue both for various reasons, mostly toxicity levels I guess. I then had a break of a few months until things started growing again. Then we tried Gem/Xeloda, but that didn’t work. So we tried Stereotactic Radiation, which worked wonderfully for about 7 months. I am now on a trial, and doing great.
Being Stage 4 is scary enough… Then you read online… UGH! I figured I would be dead in months, even though I am healthy, and mostly always have been.
I’ve been fighting for almost 3 years, and I’m still scared. I’m mostly scared of getting sick. Where do I go? What do I do? I live alone. It’s a tough thing to think about.
So, no, you are not a baby. Most of us admit to being scared and lonely/isolated at times. And most of us will admit we cry. So no, you are NOT a baby.
BTW, my uncle died of cancer. And my father beat prostate cancer 17 years ago. That’s it. No other cancers. No illnesses. Nothing. I lived a healthy life with 4 healthy brothers and healthy parents. Almost nothing in my genetic makeup. So how? Why? Me?
I hope this helped you. You are not alone with the questions or worries.
If you want to, feel free to email me at kris00j@gmail.com. And you can ask me anything. If I know the answer, I will tell you.DukeNukem,
Welcome to this wonderful support group. I also live in Ohio and my treatment is at The Cleveland Clinic. I was diagnosed three and a half years ago with stage IV ICC. I had two liver resections, chemotherapy and radiation. My chemo experience has been with four different chemos and my tumors were not that responsive but I have had great success with steriotactic radiation. You mentioned you are a private person but if you ever want to talk please feel free to call me.
Lisa
330-903-6868(Note: I’m re-writing this after I’ve written most of the following. Just writing this down and reading more of your stories has made me see I’ve got it pretty good. My numbers are continuing to show improvement. CC 19-9 never made it over 1000. I feel good. I’ve got loads of support and love. Maybe I just have to realize that I need to live in the here and now and let the future happen – it’s not cast in stone. I’m an engineer – my job is to solve problems – maybe I need to define what an acceptable solution to my problem is. I’ve read numerous places that cancer is a sickness, not a sentence. “Cancer will not run my life! Cancer will not define me!” Judy Nemes in “Coping with Cancer” September 2013. Easy to say, hard to put into practice. http://copingmag.com/cwc/index.php/rss_article/living_with_colon_cancer)
I found this site by accident. As I read your stories, I found some of my story, but not all of it. I am a very private person but I feel I have to participate. Selfishly for my benefit, but hopefully someone will gain something. I’m taking advantage of the fact that it will take several days to complete my login, so I can edit this (and I have). I started this a month ago – it’s time to post or get off the pot.
My current story began July 3, 2013 (the back story will have to wait). I had been working 8-12 hours a day 5-7 days a week for 10 weeks and had lost 23 pounds with no end in sight. I’m 5′ 10” so 150 pounds was a little light. Primary Care Physician ran some blood tests and scheduled me for a CT scan July 5 with a colonoscopy the following week (my first, even though I am 62). First visit to Oncologist was July 10 (Seidman Cancer Center joint venture between University Hospitals in Cleveland, Ohio and University Hospitals in Lake County). She said it was inoperable, radiation would not work, and if I didn’t start chemo soon, I would be dead in six months. Tri-fecta. CA 19-9 was 636. Alkaline phosphatase was 761. MRCP on July 22. Identified cancer in lymph nodes, lungs, and liver. Liver tumor was 19 cm. Biopsies confirmed cancer in the lymph nodes and liver. I understand that late diagnosis at stage 4 is common.
Started with cisplatin and gemzar (gemcitabine hcl) July 24 but changed to carboplatin and gemzar. Had another CT scan September 20. Liver tumor had shrunk to 17 cm. Yesterday’s CA 19-9 was 61 and alk-phos was 157. Completed my sixth round November 13. Had to take last week off, platelets were 77,000. Back up to 199,000 yesterday. Will have next CT scan in mid-December (after round 7).
Weight is back to 160-165 pounds (lowest was 140 pounds). Very little neuropathy. No nausea. Platelets are low, 90,000-130,000. Had a wellness screening at work. All numbers were textbook. If it weren’t for CC, I’d be the healthiest I’ve been for years.
The liver biopsy said the main cancer type was pancreaticobiliary (90%) with CC as the subtype (88%). I don’t have a good handle on what the differences are between main and subtype, and pancreaticobiliary and CC. Can someone help with that?
Oncologist is talking about possibly stopping chemo after the December CT but was a little light on the rationale. Is this normal? I’ve read a bit on reasons for stopping chemo, definitely not reassuring for the long run. Sounds like I might be reaching the point of diminishing returns. Has anyone stopped chemo then restarted?
Right now my biggest concern is my emotional stability. The first two weeks were tough, telling my sisters and three adult children. My wife was there when I learned. About once a month a have a pity party for myself, no guests allowed. My wife is wonderfully supportive as are my family and friends. I’m on several prayer chains and keep them updated. But the questions ares why? me? now? I’m ready for retirement and we have plans to keep busy, including travel. No grand children on the horizon. What could God want from me in heaven? I’m ready for 25 years of heaven on earth with my family. Statistics say I might get two, five if I’m fortunate. I’ve supplied enough whine, others need to bring the cheese. Someone from work said it may not be about me. Maybe I will have an influence on someone else, maybe not even someone I will ever know. My thoughts and prayers go out to those with CC. My condolences to those of you who have supported CC patients who have died. You may think I’m a baby, but I’m scared. Anyone have experience with hospice care? My next visit with oncologist will be Christmas Eve. Will be the best or the worst ever.
Next thing I have to deal with is genetics. Both of my parents drank and smoked, had cancer, died from heart issues. So it might be in both X and Y chromosomes. What time bombs have I planted in my kids? But David Servan-Schreiber (Anti cancer A New Way of Life) pointed out evidence that genetics may not be a main player.
Too many questions, not enough answers.
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