It sounds like you have been carrying a very heavy load for a very long time. Please reread the caregiver's bill of rights. (Lainy recently posted it again). It is more important than ever that you take care of yourself, because you will not be able to help your loved ones if you are spent. Sometimes, my husband and I don't even need words, we need time just to cuddle and hug each other. Before my cancer dignosis (May, 2007), it was easy for me to ignore my wants and needs if I believed my loved ones had needs I could meet. But always giving and never receiving leads to an empty vessel. One of the things I've been learning while dealing with my cc is that it is wise and can even be fun to let others take care of my needs some of the time.
My Mom recently passed away, too, so I understand the feeling of numbness and just putting one foot in front of the other to keep going. Please let others help you in this difficult time. I am praying for you and your family.
I believe in the healing power of tears. They are water of life. Thus, I was sad to hear your news and willing to let my tears fall for all of us going through difficult times. I think I spent more time in the hospital in the last 2 months than in any previous 3-month period of my life, but I'm home again and looking forward to Christmas with my family. I believe you and your Mum have the strength to get through the subdued Christmas this will probably be for you, but I will continue praying for you.
I don't know what your dad thinks of the internet or the computer, but it doesn't hurt to remind him that none of us came with cancellation dates on forehead, feet, or anywhere we could find. If it helps, read to him from this site. Many of us have been dealing with diagnosis/recovery after 3/5/or even 10 years, so don't let him dwell on the 2-week ticket punch. We take one day at a time and try to enjoy something every day. Most of us found websites that didn't seem to help at all. We now try to avoid the sites that are depressing, but this site has never been depressing to me.
Your doctors may know the disease and the medicines, but the best expert on your Dad is himself. He is the team leader. Any time he feels that his opinion doesn't matter to the doctor, he can fire the doctor and find another.
I believe that, besides the power of prayer, the cancer center has played a big part in my still fighting after 2 1/2 years because I have been able to gather my team and be involved in all the decisions I want to.
My Mom was 86 when she was diagnosed and chose not to pursue an aggressive fight. Her oncologist didn't think she had a year then, but she lived almost 3 years more with prayer as her primary ally. These are the stories often shared on this site because we all go through so many of the same things, we are encouraged by each success no matter how little or major, and the encouragement helps us maintain the fighting attitude. Yes, we also all have down time, but the encouragement helps us get back up, dust ourselves off, and get back into the fight.
At the top of this page is a search forum. You can enter as little or as much as you want in any part of the search function and it will lead you right to relevant posts. You might want to enter San Diego doctors or some variation of that to see what comes up.
Wish I had found this site as quickly as you have. It is so supportive and eliminates much of the frustration I started out with because of difficulty finding relevant information.
Best wishes in the battle; no matter how long it lasts, there will be help for you here.
Re: My father was diagnosed on October 29th with Cholangiocarcinoma (32 replies, posted in Introductions!)
Yes, the statistics can seem grim and depressing, but they are based on history. Statistics are not good predictors of an individual's results. Most of us on this site have gotten discerning about what sites we visit, because the depressing ones don't offer hope or even much good advice. This site, however, manages to share encouragement, results, and information that makes for a great resource. As you become an informed advocate for your loved one, the doctors will consider you part of the caretaking team. As long as your dad is informed, he will and should be encouraged to make all the decisions he can handle.
"They also serve who only stand and wait" was said about members of the military, but it applies to all the caretakers who want the best for their loved ones. By educating yourself and being prepared with your list(s) of questions, you can help the doctor stay current and consider alternatives. A good doctor appreciates your input, because they may know the medicine and the "norms", but you know the patient in ways they don't.
My cc diagnosis was in May, 2007 with jaundice, ERCP, and stent in the bile duct, but my cancer was extra-hepatic. I have not had chemo and radiation simultaneously, but I have had both. Even if you start a plan and only have one treatment, it is still the patient's option to say no, I don't want to continue that. The side-effects are more than I want to deal with. What else can we try? Have you considered Gemzar/Cisplatin?
My suspician is that many of the sites you visited were not very personal and focused on the stories that had short time between diagnosis and death. One of the tings I value on this site is that we have patients who have lived 3, 5, 7, 10 years or more. And what's fascinating is that they share stories in details, what they've experienced, what they expect to try next, what changes they make and why, what now seems "normal", how faith has helped. And the people who've survived longest still have lists of options to try in the ongoing battle.
My Mom was also diagnosed but at the age of 86, she chose not to pursue radiation or active chemo. When she chose a low-dose pill to take at home every day, her oncologist didn't think she would last a year. Prayer was her best ally. She lived almost 3 years after that, passed away Aug. of this year.
When the patient makes informed decisions, they tend to do well and need all the support they can get, no second guessing. And if the doctor doesn't agree with the patient, fire the doctor and find one who supports the patient's choice.
Hope this helps. Gotta run. Need to be at the hospital in an hour, having blood transfusion (2 units) because my hemoglobine dropped to 8.3 or something like.
Post as often as you like, you will get responses.
I think our date has to be cancelled. Work was going to pay for the conference and travel expenses, but I'm quitting the job, so I don't expect them to pay. And I was so looking forward to seeing you then.
Julia, don't be sorry about the chuckling. I just didn't want to laugh in
Tom's face about it, but I was tempted. Now I think he understands why women are not in a hurry to go get an annual mammogram. I'm sure he's in no hurry to get a repeat test.
Didn't get the new chemo yet, so I'm hoping to hear from them real soon. This "hurry up already" "WAIT, need pre-cert" "Hurry up!" "Wait" is another roller-coaster I dislike. If I don't hear from them pretty promptly at 8:30, I'll probably be calling them. I suspect dehydration, low hemoglobin and maybe other problems need to be addressed before I can start the chemo. I've experience some disorientation (What day/time is it?) and some weakness in the legs. So I'm waiting to see how this day unfolds.
Bless you all!
2 weeks in hospital, 4 1/2 hour surgery, 2 days in ICU, colostomy and learning to take care of the bag. etc. Diet still not back to normal, but now able to eat some solids and keep it down. Supposed to start chemo today with a new (to me) cocktail. Anyone had taxatier and carboplatin? Hospital called me this am because I was scheduled to start at 9, but the insurance pre-cert wasn't done yet, so they'll call me again when they get it.
I started an anti-depressent while in hospital, and I think it's helping. Tom started one, also. He had a mammogram but was told that the lump was merely fatty tissue, not a tumor. What a relief, one issue at a time is enough. He complained that the mammogram HURT! It was hard not to laugh at him, because I knew it would, but he had no idea.
Thanksgiving was great, saw all my kids last week, and my grandson, too. Had the feast at our house, but I didn't do any of the cooking. It's great to have a family that enjoys cooking. They all pitched in. We've made a start on Christmas decorations. I'm so glad I started my Christmas shopping early, because I haven't been out to the store in weeks now, but I think I'll have plenty of time to finish my shopping.
Yes, the roller-coaster ride continues, but one day at a time, I believe I'll get through it again.
I've missed you all. God bless you!
As Marion indicated, this is not a one-answer-fits-all. Please take notes throughout the appointment. In fact, don't start with a blank page, start with all the questions that occur to you now and write them down. The amount of information to be conveyed both ways can be overwhelming and if not written, it is easy to forget what was asked or said. I don't know how alert/informed your mom is or wants to be, but most patients benefit from having an advocate to ask questions. Ask to your heart's content. Let your mom take the lead, but if she doesn't want to ask questions, you should then start asking. Most doctors will provide the patient with answers to any asked question, but they don't often volunteer the possibilities or the unlikely events. Many times, when the patient describes symptoms, the doctor responds with "that is normal." If I had known it was normal, it would not have worried me as much, so I like to ask what to expect as well as what alternatives I have. An iimportant part in what treatments to follow-up with is whether we are dealing with quantity of life or quality of life. As a patient, I'm fighting for every minute of life I can get, but the day may come when no treatment is expected to help me get better, and treatments could merely prolong the pain. That might be when I would consider giving up. My mom was in her 80s when diagnosed and preferred staying home with little treatment. Her oncologist didn't think she would live a year more, but she almost made 3 years anyhow. So even if a majority of the people on this board all recommended chemo or radiation, they could all be wrong. If your mom is willing and interested in making that decision, we would all support her in that. If she wants you to make the decision, go with your instincts and you will be right.
Hang on for the ride of your life! Do you like roller-coasters?
Left the building--to go get more bananas?
If you can't convince your Mom of the need to go to the ER, there is a simple "test" you can do at home to see if dehydration is the issue. Remember, headaches and dry, cottony mouth can be symptoms of dehydration. As for the no-lab test, pinch the skin on the back of your hand to form a "tent." When you let go, does the tent hold in place or disappear. If the tent disappears immediately, dehydration might be happening, but it is not the major issue and can be addressed by simply trying to remember to take more frequent sips of any fluids, though broth and clear liquids are usually best if vomiting has been a problem. Also, eating ice chips can help if temperature is not an issue. If the "tent" of skin holds for several seconds, the dehydration is serious enough to merit an IV in the ER. I had a scare the first time I was seriously dehydrating because I didn't know what was happening, but my own voice didn't sound normal inside my head; almost seemed like the whole head was hollow. And if you're getting fluids through an IV, they can also put an IV medication to alleviate the nauseousness at the same time. My serious dehydration occurred while I had stents with external drainage bags. When the drainage was allowed to flow, I could easily lose 1000 ccs of fluid in a day, which is impossible to replace with sips from a cup. I had several days in a row where I was given a couple of bags of saline solution via IV, but I bounced back when we capped off the drainage tubes. Hope this helps someone, and of course, anyone in ER should know the seriousness and solution for dehydration, even if your onc is not available for consultation.
I think I can relate to your feelings. My initial diagnosis was in May '07 so I'm approaching the 3-year survival point. I've recently been experiencing the worst pain of my life due to blockage near the kidney. About 2 weeks ago, I requested (and received) help for pain management. I have had lots of Dr appt and treatments. Yesterday, they inserted a stent that will probably need to come out in 4 months. The question to answer at that time is if it will need to be replaced or if the coming chemo/radiation will shrink the tumor that has caused blockage. Though my bowels are not back to normal yet, the stent should prevent the kidney from experiencing permanent damage. So far, my creatinine count has been improving.
I don't know if you have done any funeral planning, but Tom and I visited the local funeral home about a year ago. We bought a cemetary plot and made plans. We ordered our headstone, and it is beautiful and meaningful. When Tom's Mom passed away 27 + years ago, he and I were the ones who met with the funeral director and felt the stress of needing to make many decisions while dealing with grief in a short period of time, wondering what Mom would have wanted, and how to involve the family members who needed to work through their own grieving. By doing our own planning, we were able to avoid the rush and wondering about the deceased's wishes. The planning almost felt like planning the biggest party of our lives. Tom asked the funeral director about something that would not have occurred to me. Many people associate black with mourning and the dominant color at many of the funerals I've attended was black. I had told my daughter I don't want a sea of black when my time comes; I want a full rainbow of color to celebrate the life we've had. So, our funeral director is going to have a florist color 200 carnations. If 200 people come to my funeral, each will get a carnation and I'll have my sea of color like I want. The headstone is in place and I'm discovering how peaceful the cemetary seems. I sometimes stop by just for another look. We ordered a statue of the Good Shepherd, so our plot is not one that should require a lot of searching on foot when someone wants to visit. My sea of carnations may compare to your year-round blooms of color at the cottage. I can picture it. If you go first, I hope you'll be one of the first to greet me at the Pearly Gates. If I go first, I'll be watching for you.
Speaking for myself as cc patient, I don't care what or how many germs my grandson has been exposed to or is carrying. The emotional lift from being able to spend time with him would be tremendous, and I believe the adrenaline, hormones, and joy in living more than elevates our immune defenses. And the memories and photo opportunities will be even more precious as time passes. If the opportunity to visit actually occurs, go for the gusto! Those are the moments to live for. Is it time for a chorus of "Viva la more?"
Hope the visiting happens!
It's my understanding that if they try to remove the scar tissue, they create more, and scar tissue is harder to cut than the original, so it would tend to cause a lot more scarring. Sorry to bear such news. I have my share of scar tissue, too. Hope you get better answers on other questions.
Just like Sue, I live in Indiana. Chicago is only a couple of hours away and I would realy love to join you all and meet Marian, but I don't believe it will happen this November. There always seems to be more to do than I have time or energy for. Between faily, job, and health, I believe I have a full plate. Maybe while you're together, we could have a virtual party, with lots of us in the chat room on here?
You used the pronoun "They" at at the beginning of the second sentence. Are you referring to the friends and Hans, or to the farts?
You want bad about Kris? She always makes us laugh, sometimes till it hurts!
Wish I had known some the things on this thread a couple of weeks ago. I would have had a long list of questions for the oncologist's receptionist. As it was, I only asked about 3 or 4 questions, but enough that she had to find answers to some and call me back later. I had a liver biopsy Tuesday and they said that the Dr. might have results today. I could call Friday if I had not heard from him/his office by then. Thank goodness, they called this am with GREAT news. No malignancy in the fluids withdrawn (about a teaspoon). I just had a PET scan this morning. I hope the results will be as good, but I won't find out till next week. So, I'm still waiting, but at least I think I'm recovering from whatever infection kept me home a week.
My diagnosis was clearly cholangiocarcinoma, but it was extrahepatic. The prognosis was bleak, but I'm still here after almost 2 1/2 years. I had the Gem/cis cocktail (2 weeks on, one week off) as first battle, and it reduced the tumor to the point that it did not show up in the scan. The cancer seemed inactive for a time, but returned as metastasis. Another series of the same coctail again did its job. If you use the search function and put my name in the author box (no subject needed), you can read my previous posts to know more of my story, or contact me via e-mail if you prefer. You didn't say how old your Mom is, but I was not warned that this combination of chemos tends to thrust pre-menopausal women into menopause, and it did me. As you go through this maze of experiences, you might feel that you are earning a focused MD. In some cases, I believe the people on this board know more about cc than the Doctors some of us deal with. If possible, you might want to find out how many cc cases her doctor has dealt with. Also, second or third opinions are very appropriate. As much as she is willing, your mom should be encouraged to learn about her case and make her own decisions. As the daughter, your job is to support whatever decisions she makes, and if she does not want to make the decisions, be prepared to do so.
Best wishes and visit often! Keep us posted on her care, your questions or frustrations, anything you want to ask is open to discuss. And if you don't want to ask, you just want to know, use the search forum. We've had people admit to lurking around the site for some time before logging on to do their first post. That is okay, too. You are not forced to divulge any info you do not wish to.
May I also say, welcome to this board!
Funky sounds like the spirit for you! Might even go real wild. An Afro? Long, short, baseball cap with fringe?
My sister used to play a lot with hair color, and her husband enjoyed it, saying he got to keep dating a variety of people even though he remained faithful to his wife.
Just keep your humor and your attitude in place, and people won't bat an eye at the hair or lack thereof. I was amazed the first time I had my head shaved how many people just wanted to feel my head. Reminded me of the chimney-sweep story, "Good luck will rub off when I ..."
In other words, just be yourself and keep as comfortable as you can.
Have fun at the wig shop!
What if instead of trying to have a little representation in lots of cities, we pick two to bombard? (and gather for a reunion)
I suggest Los Angelas to tie in with Teddy's name for the cancer (city of angels with cancer of angels) and London, another city of the same initial. I also like the idea of asking Congress to declare April Cholangiocarcinoma awareness month. Could the MPs in England also be asked to make the same declaration? My belief is that a concentration and focus is needed to get this off the ground. Later, more cities can join in.
I think my merry-go-round is slowing down. They did not send me for labs, which disappointed me. They did recommend a suppository and Gatorade. I've had 12 oz of the Gatorade, but the med infor sheet on the suppository said extra precautions for people with liver problems, so I haven't used it yet, not sure I want to, asked more questions and haven't gotten answers.
My liver biopsy is scheduled for Tuesday, and my PET scan for Thursday, with my next onc visit the following Wednesday. I've now had the 3rd dose of the 3-day azythromycine antibiotic, and finally starting to feel better. Never liked Gatorade, but either I really need the electrolytes or they've finally found a flavor I like. So far, it has stayed down, and so has my temperature.
I'm delighted the percoset worked for you! I've had it and do not like it. Apparently, the morphine/percoset combination is often used, but it caused me to have no memories of an entire day. That was the day Tom and I had several "conversations" from which, he bought a Cadillac, which I do not like. My medical records now indicate allergies to the two, not because I actually reacted to them, but because I would rather experience some of the pain and keep my memories. Tom said he had never heard any precautions against making major decisions while recovering from anaesthesia and I sounded perfectly logical in th conversations I cannot remember. Oh well, at least I rarely drive the caddy, our son uses it with joy.
How fitting that my 100th posting is in response to Lainy's coming home!
Take it easy and do not be in any hurry to resume being the rock so many depend upon. Let others take care of you for a few days.
Love and hugs,
Have you visited a wig shop? Not that you need to buy a wig, but you can try on lots of colors and see which one(s) you like most. Your great sense of humor might even allow you to enjoy a wild mix of colors. As for Hans, if he's as much like my husband as I'm guessing he is, he cares about your happiness more than he cares about the color or length of hair on the head. Tom did have to get used to the idea that I might get my head shaved before we cut off the hair, but he actually did the cutting and then, frequently smiled as he stared at my head. Of course, the hair has grown back with curl! For Tom to get used to the idea of me without hair, he visited a website that showed lots of bald women, including movie stars. I suspect the site is still around, but he rarely visits it any more.
Next discouragement--started an antibiotic today. Postponing the scan and the biopsy and the visit with the oncologist because I won't have been on the antibiotic 24 hours by tomorrow am. They "don't think it is swine flu" but call tomorrow if worse or Friday if NOT better.
Welcome. I agree with Ron and Marion. However, in addition to rest, Mary should continue any physical fitness program she might participate in as much as she feels able to do so. I did water aerobics. If she has not had a fitness program, it might be time to consider one. Working out helps maintain energy, keep up a good attitude, and (with the right program) also provides some social benefit. When so much of my life seemed out of my control, water aerobics was something I could control. Of course, you did not mention your Mom's age or her condition before diagnosis.
One of the difficulties with cc is that the disease is unpredictable, and each individual is different, so the medicines/chemicals are also unpredictable. Even if we could tell you what to expect, we would be wrong some of the time. I was rarely warned of the side effects I experienced. In fact, I often experienced the opposite of what I was prepared for.
My mom was also diagnosed at the age of 86. She chose not to pursue active treatment of any kind and her oncologist didn't think she would last a year. She lived almost 3 after that. Her primary weapon in the battle was prayer.
As for yourself, read all you can but don't believe the stats. Encourage your Mom to make as many decisions as she is comfortable with, and support her in her decisions as much as you can. It is a good idea to have a notebook for all the questions that come up so you can ask the doctors at regular visits and write down answers. There are so many questions that if we don't write them down, we may forget to ask and if we don't write down the answers, we may not remember.
There are lots of caring people who visit here, so come back as often as you want. We use this forum for questions, sharing experiences, celebrating successes, letting off steam, venting, whatever is needed, and we give and receive feedback.
I'm glad you found us, but I wish you had not needed to.
Well, now I have another concern. Today, the radiation oncologist also had a look at the CT scan, I guess. I had been released from the care of the radiation department, but now they want me to have a needle biopsy, with ultrasound. There are spots on/near the liver that ould be just reaction to the radiation I had in March, but the scan is not clear. So, at least the Drs. are investigating some more. While I am relieved that they are on the trail again, I hope they quickly find something minor to explain all these "minor" irritants.
Your prayers are appreciated!
In August, I had a CT scan and we decided to do another in 2 months because there were shadows that could have been mere scar tissue. Today's scan had enough similarities and differences that the onologist decided I need a PET scan this week to try for a clearer image. A part of me is relieved that we are on a hunt again because I've been having a number of minor things like daily temperature fluctuations from 97 something to 99.8, sleepiness each evening, not sleeping well at night, aches and pains in various places, cramps in legs and feet, bowel changes, headaches--luckily, no jaundice. Any one of them alone probably wouldn't mean anything, but when you put them all together, I have to wonder what is going on.
In the meantime, I need to get my grading and posting all done as this semester is almost 1/2 over already.
I could use love, joy, peace, patience, kindness, goodness---wait, those are gifts of the holy spirit! Please pray for me to have strength, energy, peace and laughter.
Love and prayers to all.