kirsten
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Michelle,
Your initial post is from about a week ago, so perhaps the condition is already better, however, when my dad was jaundiced, he too was extremely fatigued and therefore didn’t eat much. Once his stent was placed, it took maybe three or four weeks for the jaundice to improve and the bilirubin counts to get back to “near normal”. Was his bilirubin count terribly high? My dad’s was 16 at it’s height, although his surgeon told him of another patient who came into the hospital at over 40. I can only assume that the higher the bilirubin, the worse the jaundice and the longer it takes for the body to correct the situation once the stent is placed. However, be persistent and have his levels checked often to make sure they are going down. You seem to be doing all the right things.
Exposure to sunlight helps jaundiced babies (because of the vitamin D). Maybe get him to sit in the sun also.
Hope you are taking care of yourself as well…
Kirsten
Michelle,
My father was also diagnosed, 6 months ago, in September, just a few days before his 70th birthday. I too, am a teacher! We seem to be kindred spirits, so I felt I just had to write, even though I haven’t visited this site in a while! The best advice I can offer is what was told to me when my dad was diagnosed – to take things slowly and in pieces, and let your mind “wrap around” things bit by bit. I always thought if something were to happen to a member of my family and one of them were diagnosed with cancer, I would go on the Internet and research, research, research. (I am a science teacher, after all.) Instead, I found that I couldn’t bring myself to do that. What little research I did do, I limited to VERY reputable cancer institutes, and I tried only to look for stories of hope. I just couldn’t face anything more at that time.
So, here is a story of hope for you! For my dad, the initial prognosis sounded so grim. His GI doctor didn’t paint a very rosy picture, nor did he offer much hope. My dad got a second opinion at the Mayo Clinic in Rochester, and as it turned out, he was a candidate for removal of the tumor. His surgery was performed on October 2nd, and went better than anyone ever expected. His tumor, which was very small, and contained in the common bile duct, was removed. All lymph nodes were clean and clear. There was no evidence of metastatic disease. He went home to recover, and returned for a follow-up 6 weeks after surgery. All reports were perfect. He is currently CANCER FREE! He returns for a 2nd follow-up MRI one week from today, and of course there is fear of a recurrence, but he looks and feels terrific, and I believe we will return from this visit with a clean bill of health as well! (If you’d like to read the journal of his story, I invite you to visit his Caring Bridge site, http://www.caringbridge.org/visit/gordonvaagen)
My prayers for you and your father as you take this journey. Do not feel as though you have lost him. Every day is a gift, and none of us knows how many more we will be given. Take each one and celebrate.
I just wanted to post an update as all of you have been so wonderful and supportive during this time of decision making. My dad met with his regular Internist yesterday and together they reviewed the reports sent by Mayo Clinic. Dad is feeling terrific. He is eating well. Basically, life is getting back to normal and he actually feels better now than he has in a very long time. His doctor explained that the two chemotherapies Mayo suggested might be used for his Stage II cancer are Gemstar and/or FU-5, both come with possible side effects, some of which can be life threatening. He explained that each person reacts to them differently. He also explained to dad that there isn’t a lot of evidence supporting the fact that chemo is real effective against this particular kind of cancer (as some of you have indicated) and that the risks may not be worth the benefits at this point in time. Coupled with the fact that the surgical report from Mayo was so positive, he suggested, and dad agreed, that the best course of action might be just to continue with the follow-up CT scans at Mayo’s GI clinic every 3 months for the next year to continue to keep a close eye on things. So that is the plan dad has made, and we support that decision.
A month ago, I was so angry about all of this and kept thinking that no one should have to know that the end of their life is potentially at hand. Now, I can see the gifts we have been given more clearly…gifts of more time, expressions of love, more laughs, another grandbaby on the way that dad will get to meet! And the list goes on… With Thanksgiving just a couple days away, how can we be anything but grateful? I will keep all of you in my prayers for more of these same gifts with your loved ones.
Kirsten
Thanks Lainy ~ You are right that Teddy, Sue, Jeff and Gary are all examples of success stories and they do give me hope. Patience is not a virtue of mine! Ha… I guess I just want to have hope that this is a little bump in the road of life that we have gone through as a family and can now “check off our list”, but it doesn’t quite work that way, does it? I want dad to get back to the business of living his life without this fear looming over his head. He is a retired postmaster who took up a second career as a violin maker. He plays fiddle in a band called “The Friday Night Gang”. My dad was always going and doing. Now, he is so quiet and withdrawn. It kind of worries me, although he says he feels great. I just want the old “Normal”
You guys are great to share your stories and experiences with me. It does help.
Can you explain to me what “cyber knife” is? I have seen that written about several times and haven’t researched it yet.
Hi Roma ~ Boy you can tell we are “greenhorns” at this…we didn’t even ask the specific names of either of the 2 different chemotherapies that the doctor suggested might be used! He said that there are a couple of types of chemo that they could use, but that one of them might not be covered by dad’s insurance. I told my dad and mom on the drive home that we should have asked so that we could research it. I guess we were thinking that we had to make the decision, then learn about the chemo…not the other way around. Aughhh….
Jeff ~ Thanks for sharing the effect chemo had on your heart. I have been so worried about the stupid little cancer cells, I forgot about the effect that it might have on the other organs! We certainly wouldn’t want to compromise his cardiac health on a guess or whim.
I am grateful to all of you for the posts. I found that I had to step away from the computer for a while because it was getting too depressing. I thought that all of the good news that my dad was given was a sign that things were going to be okay, but now I have more fear than ever. Isn’t there anyone out there in the world who got this disease 20+ years ago and is still alive to tell about it?! I guess that would be a different website. I sure wish THAT website was out there because I could really use a ray of hope right now. I feel a lot of frustration, because I don’t feel we are any closer to an answer than I did a few days ago…This CC cancer is crazy!
Thank you again for all of the responses. I am carefully reading each one and taking in the points you make. Marions, thank you for the reassurance that we are doing the right thing by reaching out to ask the opinions of others who are fighting and surviving. I know of no other way to help my dad. I am a high school science teacher by training… I understand more than I want to right now about this cancer. By default, I am very logical and analytical and want to lay out the evidence before I make a decision and I am hoping that this will be a strength that will help dad make a final decision. The medical oncologist that he saw at Mayo on Friday told him that he shouldn’t wait too long to make a decision. He said that chemo usually begins at about 6 weeks after surgery. (Dad’s surgery was 6 weeks ago on Thursday.) He encouraged him not to put off a decision until after the holidays, as that would be too late.
Jeff asked if dad has been in otherwise reasonable health, and the answer is a resounding YES! Other than a faulty heart valve which caused an irregular heart beat for the last 30 years (now regulated with the help of a pacemaker…another addition he got back in September when they tried to do the first ERCP and his heart rate went crazy), he has never been in the hospital, never had any kind of surgery…just nothing. I think that is another reason why this is such a shock to us. He has always been so healthy. He wasn’t even sick when they discovered the CC…he just turned jaundice, so mom took him in to have it checked out. Painless jaundice, that’s it.
Just when I think I have arrived, I find myself back on the journey to that place where faith eclipses fear. I have to be thankful to God for all of the prayers that have been answered already and continue to remember that He is in control…not me, not dad, not the chemo doctors, not the chemo.
Again, many thanks for the words of wisdom. This is helping me so much. We know of no one else who has, or has ever had, this type of cancer.
Thanks for the advice from all of you. I hate being part of this club, as Lainy said, but I am thankful to have such great voices of experience to lean on as my dad goes through this. This sucks….let there be no doubt. Even when the news is good, it is hard to feel “lucky”, as we all know how unpredictable this cancer can be.
Lainy, if I may ask, what made the two of you decide on NO CHEMO?
Our family is kind of torn. My gut instinct is the same as Walk wrote…to try it and if he doesn’t tolerate it well, then stop. His oncologist told us that this is generally a well tolerated chemo and the regimen would likely be once weekly IV treatments, three weeks on, followed by a week off, for 6 months. He said that dad would need to be monitored so that he doesn’t become suseptable to other sicknesses through this process. On the other hand, one of the beliefs I have is that as people age, their immune system cannot regulate invaders as well….hence, things like cancer cells get through all of the protective machinery which is supposed to be in place. If this is the case, I sure wouldn’t want to see his immune system be compromised any more than necessary. My brother feels that this would be the case and is voting against chemotherapy. Gosh….I just have such fear that we might be sorry later. Aughhh.
Have any of you ever heard of ANYONE who has successful surgery and NEVER had any follow up therapies and NEVER had a recurrence? Is that even possible, or are we being too optimistic?
