charlea
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Rick,
I fully understand how you are feeling when something changes that you see as a negative. The protein issue is real as I notice an increase in abdominal and leg swelling when my “quality” protein drops off because I am too busy to cook a more nutritious meal. Exercise is critical too as the muscles contracting can help mobilize fluid from your tissues through your kidneys. Try to look at solutions instead of “borrowing trouble”, anticipating a more negative outcome. Stress causes fluid shifts as well so the prioritizing others have mentioned is really important.We have seen so much loss on this site but we have to acknowledge the incredible courage those who have gone before has shown us. Even though CC is a formidable enemy we can borrow strength from others in our fight and you can also allow us to carry some of your burden. The decrease in your markers is certainly something to cheer about so we will pray that that is the case. My best wishes.
CharlotteLainy, I know you are suffering for the decision you made regarding Teddy’s last days but you did what you thought was best and it should have been. It was the fault of whoever was in charge of that facility. We all learned from your experience, especially the sharing, and that may help someone else make a decision based on knowledge. How would you ever have known that they would not give the level of care that you gave Teddy for so long. You can’t know. Based on your experience I will look closely now at my options while I still have the energy and the time to do so. I won’t leave the decision to my husband because I have so many friends who would have a better perspective. I know that I want to die at home after I have painted enough pictures, shared enough laughter and love with friends and family, eaten enough of the comfort foods I crave, and just experienced enough “life” before I go. You gave that to Teddy……never forget that.
Charlotte
I read this article through to the end and found myself wondering how much a person has to suffer before someone says “stop!”. There are therapies but should we continue to look for them when we have reached a point of no return. I am 67, have had a wonderful life, able to do pretty much what I have wanted to do all my life but this CC has changed my path. I have never been afraid of cancer even though I watched my patients go down a path of increasing debility from their cancers. I am a nurse practitioner and have managed a cancer registrar program. My patients for the most part have moved through their disease with excellent supportive care that addressed their needs fully, particularly the pain management. I think sometimes that it is the pain that patients fear most and if we can control or decrease that we have won half the battle against this disease.
I have lost three close friends to cancer in the last two months and prior to that I cared for my father as he died from a brain tumor and a year later I spent 9 months caring for my mother who had metastatic squamous cell cancer. My only concern is how my husband will manage the later stages of my disease. He may try to pressure me into trying a trial or treatment that I know will not change my course and may diminish my last days from a quality standpoint. I have to have the courage to say “stop” when I feel my life is no longer under my control. I want to live and die with dignity……….
Heat and moisture from being in bed can cause a yeast-like infection…may not be related to the CC. We tend to blame many things on CC when something can be easily treated with regular meds. And then we go the other way, thinking it is something innocent when it is actually the CC causing the problem. More than a year ago, before my diagnosis, I had significant scalp itching which disappeared once I went on chemo. Now the itching is back and I feel increased abdominal distention so I think the CC is activated again. Having a CAT scan Wednesday so we shall see if the scalp itching is related to new growth of the CC.
Welcome to our group. Just remember that you have a 50% of no recurrence so live like that is the likeliest outcome. Enjoy your family and friends and do the things on your “bucket list”, things you’ve thought you would like to do “someday”. My best wishes to you….
The Angel among us is gone from this earth but with us in spirit. She will be remembered in peoples’ hearts…..
Melanie, welcome to this wonderful site. The reason for finding us is sad but what you will receive here cannot be compared to any other website for people with a specific illness. You have already realized how unique this disease is for each individual, first because of the complexity of the liver’s function and second the location of the tumors. My course has been mild to date but gem/cis did not work for me while a chemoembolization did help. However I have a single tumor in the liver and positive lymph nodes in my abdomen. We don’t know the future so we must enjoy the present. My prayers are with you and your husband, Melanie.
I too had complained about right upper quadrant pain for at least ten years before I was diagnosed. My doctors did not ignore me but all tests came back negative including ultrasounds, CAT scans, liver enzymes, UGI and barium enemas. In 2005 I had my gallbladder out but without improvement in the pain. At times it would be bad enough that just putting my foot down too firmly would cause an increase in pain. After a time I just gave up pursuing the cause and then in January of this year I had a slight swelling just below the juncture of my ribs and inability to take a deep breath. It was very minor but my new doctor jumped on the symptoms, did an x-ray that showed a markedly elevated diaphragm and sent me for a CAT scan that showed the large tumor in the liver and enlarged lymph nodes. I am doing very well now after one period of chemo and a chemoembolization. The cancer is still there but not progressing so……we all have different stories and we pray for and support those who suffer from CC. What a person learns on this website is extremely important, both from a physical standpoint and a psychological viewpoint. How much difference everyone on this site makes to each of us. I could not have kept my positive attitude so easily without the loving and caring of the group. Happy New Year to all of you.
Your story is truly miraculous. My prayers are with you for a full recovery and many healthy years with your little girl and family.
Lisa,
I’m a “neighbor” on Whidbey Island wishing you and your family a healthy New Year for 2011. You and all of our team mates are in my prayers to maintain hope, our greatest strength.I received gem/cis too without any response but now it is thought that my CC is so slow growing that it would not respond to chemo because chemo works on rapidly dividing cells which mine are not. A PET scan did not show the lymph nodes in my
abdomen (biopsy of same were definitely adenocarcinoma) and that relies on rapid uptake of glucose so those are not highly active. I have had a chemoablation of the liver tumor with good response and almost no side effects. That was done July 6th and I have had no further growth of the lymph nodes and no treatment. I am having sequential CTs only at the moment. Perhaps there is a reason for the lack of response to chemo. My best wishes for you to find a doctor who will provide you with the hope you need to keep up the fight.Lainy, I have been following this posting because of my nursing experience and the thing that kept coming through in my mind was how fortunate Teddy was to have had all that wonderful time with you and your family and friends. You had so much deep understanding of Teddy, his disease, his needs and still had time to share your life with all of us. A remarkable wonderful woman who gave Teddy everything he needed with only one bad episode to mar an otherwise perfect caring.
I appreciate all the feedback I received related to my question about fast vs slow-growing CC. Here we are just a few days from Christmas which would have been the second doctor’s prognosis of 12 months yet my energy and appetite continue to be normal if not actually better than before diagnosis. I could use the weight loss but I have been encouraged to maintain my current weight. I’ m thankful now that my oncologists did not recommend aggressive therapy when they evaluated all of the factors. The lymph nodes in my abdomen did not light up on PET which confused the picture initially but that was probably the first clue that I had the slow-growing type. Chemo of gem/cis did not affect me the way so many others experienced it, no nausea, some fatigue, decreased white count twice but nothing more. My doctor gave me 3 anti-nausea meds before and during chemo which may have been more effective for me due to the fact that my cancer is in my left lobe and doesn’t appear to be in the right lobe. At last CAT scan there was no further enlargement of the nodes in my abdomen and no others have been obviously enlarged since. I proposed to my oncologist on my last visit that maybe my autoimmune diagnoses (diabetes, MS, arthritis, etc) may have put my immune system into hyperimmune status and hold my cancer at bay for the moment. I have mentioned before that I also take 10000 IU of Vitamin D3 daily. I don’t know if it has any effect but told my doctors at the outset that I would not quit taking it. I pray for all of you on this site and particularly the families who must watch their loved ones suffer. May God’s light shine on all of you during these difficult times.
I found your comments about Teddy’s hospice experience so disconcerting that I just had to respond. I am a Family Nurse Practitioner with 30 years experience. One of the most important issues we addressed was pain control. We were required to have so many hours of pain management education, particularly when I moved from a hospital to a clinic setting. One of the most critical elements is that the physicians who oversee hospice have to believe that pain control, not dosing is the issue. I once had a patient who was receiving 1200 mg morphine per hour! No one was afraid to give these massive doses because the patient needed it. All other comfort measures were employed too, back rubs, cooling measures if there was fever, keeping the patient clean and dry. My philosophy was that I would care for patients the same way I would want my family treated. There are so many more pain relief options now than there were when I was in the hospital setting and there is no excuse for what Teddy went through. Perhaps we need to look at the training those hospice nurses were receiving. I cannot imagine not giving a patient pain meds because he couldn’t ask for them. People in pain demonstrate all kinds of behavior that an astute nurse would pick up on.
I have three friends who have Stage IV cancers, one of whom just entered hospice care this week so I will make a determined effort to go to her facility and see for myself if what I have believed is true about our care in my area.
We have especially strong Home Health nurses who take care of patients who choose to stay home for their last days. They are also the ones who teach the pain management classes so there is close observation of nursing practices.
I pray for all of you who will rely on these caregivers. Research what they will and won’t do and how it is done. Go to the top if you feel you or your loved one isn’t getting the best care. You and they deserve it. Your family doctor should be an advocate too. My blessings to all of you who must look at this end of life decision making. There are some superb places and some wonderful nurses who can help you maintain your dignity. Ask questions at cancer support groups or discuss pain issues with your oncologist and family doctor before you need them.It was really helpful to hear from so many of you. Reading what is said to others has given me a much greater understanding of the disease itself but more importantly I have been deeply impressed by the caring extended to individuals, especially those who are still reeling from the diagnosis. I see what people go through and cannot believe the incredible courage displayed. I can only hope I can be as strong as you all have been. May God bless you…..
