thecdr
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Well, today I find out the results of my first scan since being diagnosed and starting on chemo. Depending on what the results show I will either start back on chemo (3 on 1 off routine) or punt. Feeling absolutely horrible this week (fever, vomiting, more pain) hasn’t exactly put my mind at ease….
Jules, I am so sorry and all I can do is send you a <<<<<
>>>>>> and tell you that it is OK to be angry, it is your right and privilege. CANCER SUCKS!!!! period, end of story. It is evil, it is a thief, it is a murderer. God bless you and your dad, how blessed you both are to STILL have each other, even if only in spirit. As I tell my son, even when I am gone, I am still his mom and he is still my son, because we hold each other in our hearts forever.
Robynhar,
I have been on Tarceva and Gemzar for the last 6 weeks. Here is what I know and experienced. Tarceva in conjunction with Gemzar has been the only drug to have statistically significant impact on increasing survivability for patients with PANCREATIC cancer. Here is the caveat, statistically significant means that about 6% more patients lived longer than a year. the reason they tried me on Tarceva is because there is so little research on cholangiocarcinoma and we are willing to try anything. BUT since it is pancreatic cancer that has the success rate, my diagnoses include pancreatic cancer and the insurance company covers. For all anyone knows there is tumor in my pancreas.
as far as side effects, my liver can’t get much worse than it already is, but we monitor my liver functions every other week and so far so good. I did get the “rash” more like acne, but it was minor and well treated with clindamycin gel, It’s practically gone now. You have to take it on an empty stomach which would probably account for the GI side effects, so I take it at night. Quite honestly I was pleasantly surprised at the lack of side effects, I am suffering much more from the cumulative effects of the Gemzar, but we won’t go into that
ditto ditto! Absolutely you should celebrate your mum’s life, what a tribute to her! And don’t tell me that she won’t be looking down from heaven smiling and raising a glass to you all! I hope the relative who is balking at this finds the peace she is looking for, she is obviously a troubled soul.
PS< Happy Birthday Scragots! I hope you do something fun and decadent for your birthday, my 50th was a blast, we had a luau in my front yard, roasted pig and all!
Lisa Ann wrote:Hi CDR,I hope this post finds you well today. Everything you wrote is so true and they are the points I need to get across to my siblings. With your permission, I would like to forward some of what you said to them, so maybe they will get a better understanding of how Dad most likely feels. He is a man of little words when it comes to his health and well being, however I know he feels exactly like you.
We are leaving shortly for the hospital once again, he is scheduled for the MRI of his brain to rule out possible mets. I am very hopeful that noting will be found, as he does not seem to show any symptoms leading us to believe it is there also.
I will write tonight, and let everyone know how it went.
Best to You, and Have a Good Day,
Lisa
Lisa, absolutely, use whatever you like! good luck with the MRI, I just had my followup CT yesterday, don’t know the results yet.
I also wanted to chime in on the hospice/chemo issue. In many states, Ohio for one, you can not enter into hospice care while you are undergoing any kind of “aggressive” therapy, including palliative chemo or radiation. In my particular case, once I make the decision to enter into hospice care, I must then make the decision that I will not be seeking any other care. I can change my mind, but it’s one or the other, at least here.
Joyce and Lisa,
Let me chime in here from a different perspective, that of the person WITH the disease. I have a set of tshirts a friend gave me that all say “It’s all about ME!” God bless the two of you for remembering that in the case of your parents. From a patient’s point of view, I need support and maybe some guidance, but mostly respect for any decision I may or may not have made. I don’t need guilt, I have enough of that already, so I don’t need someone telling me that it is my duty to pursue everything possible to stay around. I need, your mom and dad need, someone who will lighten the burden, not make it heavier. I don’t want you to decide for me, but I do want you to provide me with the data I need to make the decision that is right for me. for example, in the case of chemo, the simple question to answer is what is the purpose of doing chemo? Is it to keep me around longer? at what cost? more pain? more discomfort, nausea? One of the things I had (and still have) to help my family understand is that none of the options that are being put before me are for a cure, that door is closed. One of the things that I tell people, friends and relatives, is that I will NOT read any “miracle cures”, websites, etc etc that are sent to me.
hmmm, I am rambling, maybe this might work better:
what I want:
to be with you
to laugh about old times
company
help with the mundane chores that sap my energy
help me plan my funeral service/make sure my paperwork is up to date, etc etc. Planning my funeral was actually very cleansing for me as distasteful as it was for my sister.
tell me jokes
treat me normalwhat I don’t want:
second guessing my doctors
infighting
second guessing my decisions
stories of people who were “cured” (cancer is not a one size fit all, so don’t profess to know anything about my particular kind of cancer)
weeping and wailing and gnashing of teeth, save that for my funeralKeep doing what you are doing, I know your mom and dad appreciate it, I know I do.
Lisa, you stick to your beliefs, you and your Mom obviously are doing what is best for your Dad and what he wants. Your siblings are going to have to deal with their guilt or whatever in another way. Absolutely pray for miracles, but reality is not the same as hopelessness. What’s that line from “Steel Magnolias”? “I’d rather have 3 months of wonderful than a year of nothing special”, well, in our case I’d rather have 3 months of dignity and not suffering than a year of suffering for me or my family. I am going with chemo for now, but my circumstances are different, I am younger, probably a little healthier (for now) and I have a 10 year old son. But trust me, when things start going downhill, where chemo just looks like it is delaying the inevitable, I will stop. I want my son to remember his MOTHER, not some broken down shell. My doctor’s keep telling me “Quality of Life”, well, quality of life is not the same thing as extension of life.
Missing U,
thank you so so much for your post, it really gave me comfort as well as food for thought as I myself battle through this disease. I too am trying to take a realistic approach to this journey, I tell my friends I am not being negative or defeatist, instead what I am trying to do is go into this battle with my eyes open. As I tell people, you all pray and hope for the miracles, l need to concentrate on the here and now and get through each day. And to the people who continue to insist on “divine intervention”, you know the ones, “My friend was riddled with cancer, blah blah blah”, I tell them that I have faith in God as well, God created my oncologist, so I have complete trust in my oncologist!
I am trying to do the “housekeeping”, getting rid of old grudges, stresses, etc, so that I can use what energy I have to fight this disease, but if God has another plan in mind for me, I am ok with that too.I found that if I take it at night then I don’t worry about being dopey
I will say it has made a big difference in my appetite, at least I haven’t lost weight my last 2 visitsME TOO!! I tell my son it’s payback time, for all the times he would fart in line at the grocery store, then look at me with a disgusted expression and say “MOM, that’s gross!”
I’m not exactly sure why, but thank you Kate for your post. I am sitting here with tears running down my cheeks but feeling somehow better, maybe because some of what you have said really hit home, or maybe it’s just your honesty, I don’t know how to explain it. I finally got around to seeing a counselor today, I have spent all the time since my diagnosis worrying about everyone else, but never really faced up to how I was handling it. I wasn’t handling it, I was avoiding it. still am. I am PISSED OFF. What did I ever do to deserve this? I served my country for 20 years, I adopted a little boy from the most abject conditions imaginable and love him beyond words, I am no angel, but I can’t think of anything I could possibly have done to deserve this. why why why? Why does this happen to us? to our families?
Kate, you have a marvelous idea about your book, I am doing much the same thing. I have picture after picture that I am slowly organizing and scanning so that my son, my family, my friends can relive the memories we all had together. After being remiss in sending out Christmas cards I am tracking down old friends and reconnecting. It’s a hell of a thing that it takes something like this to reconnect with old friends, but at least we’re reconnecting. I hate telling them the news, but I would hate it even worse if they found out some other way.
I am grieving for ME, I am grieving for the future I may not have, because even if I am able to beat this thing, something has been stolen from me, and it SUCKS…..yet, as they say, life goes on. My son still has to do his homework, I still have to work, I still have to clean the house (dammit, don’t we get any breaks?)
oh please don’t be quiet Joyce, your post, like all your others is chock full of wisdom that I use and will continue to use, thank you!
Barb
Colleen wrote:I have two girls 9 and 5 years old. I know my 5 year old doesn’t understand what is happening to her Daddy, but she does ask all the really tough questions. I thought my 9 year old understood how sick her Daddy was, until last week when she asked him a question that started “Dad when your cancer is gone can we . . .” I am trying to keep thier lives as normal as possible, and I don’t want to scare them, but I think they need to know just how serious his cancer is. If any one has any suggestions on how I can help them to better understand how sick their Daddy really is I would appreciate it. – ColleenColleen, I think I am speaking from experience since my son is 10, only difference is that I am the one with the disease
What I have found is that kids will process this kind of “news” as their emotional and psychological maturity will allow. At this point your daughters are doing just that. LET THEM. They know how serious his cancer is, that is, they know on the level of a 9 and 5 year old. The statements such as “when your cancer is gone” is perfectly normal, think about it, don’t you have friends and family that say pretty much the same thing? you know, “you’ll beat it”, “praying for a miracle”, etc etc.
What I have come away with in my experience with my son are the following:
*Children will process what they are able to and will give you signals when they are ready for more. My son eventually asked me “Mom, are you going to die?” He is much too smart to be fooled by the “we’ll all die someday” BS, so I told him the truth, that the cancer I had was very bad and that I probably wouldn’t be around as long as I want, but that the doctors and I were doing everything we could so that he and I could stay together.
*Children deserve the truth, but they don’t need to be beaten up with it. Ask yourself why it is so important they know how sick their father is at this moment. Remember that denial is one of the stages of grief. I know that one of the reasons I wanted to make sure my son knew was because school was starting in a couple of weeks and there was no way that this kind of news can be kept secret. How would he react when the first adult hugged him and said how sorry they were about his mom. As sad as it was for me to hear, I also knew that he “got it” when he asked the kids in his class to “pray for my Mom, she has a disease that’s called cancer”. The fact that he is able to talk about it outside our home is a triumph in my book.
*Children need to know that they will be safe. I think that right now your oldest daughter is going through the “If I close my eyes the bad monster will go away”. If she talks about what happens when Daddy doesn’t have cancer any more, the cancer will go away. My advice would be to let her do that, but inject a little reality in your answers. Not “DON’T YOU GET IT, THE CANCER ISN’T GOING AWAY!!!!” but “well, we hope that Daddy’s cancer goes away but it might not. What can we do now with Daddy that we don’t have to wait?”
My son really needed to be reassured that I was going to be his Mom. Without going into the gory details, my son has severe abandonment issues and this has been one of the hardest things for me to grapple with. His psychologist told me to remember that there is a difference between adandonment and loss. I am not abandoning him, but he will be losing me. But he also knows that I will ALWAYS be his mom and that he will ALWAYS be my son, and that we carry each other in our hearts forever. We give thanks every day for the time we have together, In fact we say “Every day is a blessing”Well, I have babbled and babbled, all with good intentions, but probably did a lousy job
BUT, I did find a couple of really good web sites that give basically the same advice I have tried to, but explained much better than I did:These are pamphlets from an organization called CancerCare for Kids:
http://www.cancercare.org/pdf/booklets/ccc_helping_children.pdf
http://www.cancercare.org/pdf/fact_sheets/fs_children_en.pdf
By the way CancerCare is a great organization and offers counseling and other help: 1-800-813-HOPE (4673)
Another organization is Cancerbackup, they are based in the UK I believe. Good article on how to talk to your kids about your cancer:
also how to talk to them if you aren’t going to recover:
Best of luck and keep me posted, we are all in this together!
hooray!!! With the help of 8 separate alarms (the internet is a wonderful thing) he actually got up on time, had breakfast and a couple special mommy and me minutes! What a difference it makes when I don’t spend what little energy I have struggling to get him out of bed and off to school! Today is a good day!
