jeffg
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Jolene, May your Daddy rest in peace. I know one thing for sure; He departed this world one happy and proud man. The love and support you gave Jolene, was that of a caring , loving ,and respectful daughter straight from the heart. You did all humanly possible and certainly should have no second guessing or regrets whatsoever! Cherish the the wonderful memories. A big hug to you young lady!
God’s Blessings and strength for You and your Family.
Jeff G.mybdm…. I don’t recall the history of your husband. Has he had surgery of any type? If you are not comfortable with is current treatment, gather medical records and scans and go for another opinion. Your previous scan mentioned he had 24/7 nursing care. I took that as he was not doing well at all and you had exhuasted all options. What feedback has the nurses given you? Althought they try not to contradict doctor orders, ask them their personal opinion. Click on treatment options above and you will find other options to consider. You really need to be aggresssive and advocate for your husband. Is his cognitive ability lessoned to the degree as not able to decide what he wants. It sounds as though possible stent placement might be an option for him, if his bilibrium is going up and he is itching slightly. I would be open with him so he knows the score and can make a decision. He might surprize you and say, hey lets put up a fight and that he isn’t ready to go.
Wish Only the Best,
Jeff G.Debbie, So Sorry for your loss. If I was a betting man, I bet that remarkable women will be a remarkable Angel as well. (all in!)
God Bless,
Jeff G.Thanks again Guys! I took note Violarob about your Tarceva experience. Sophie , That’s what I’m doing is making up all those incomplete assignments to get a better grade Ha! I always played hooky to much, but I had fun doing it. I watch are you smarter than a Fifth Grader every week and if I was on the show, I would have won the Million twice now. Oh, wouldn’t that be nice. Salsarcat, You are 100% correct liver remaining stable and all other organs clear is a big plus! Actually, I’ve requested the doc to order me some zometa treatments, to add a little strength to my bones during this time. It’s not a chemo drug but some studies have shown it helps starve off cancer. Thanks Mary , I love positive flowing thoughts flowing my way. Carol it’s been a rough road but, I will always be listening for the whisper. Rank I hope your Dad has a positive experience with Tarceva. Patty, I have explored that possibility but never followed through. I still have a plan of maybe trying Baby’s formula mixed with natural grape juice. The only problem, is who would burp me? Ha! Sorry I couldn’t resist.
Good Night and God Bless to All, P.S. Belle , a prayer for your Sis.
Jeff G.Hi Gail, Just saying hello and let you know prayers are headed your way. I can only agree with what has already been said at this point in time. Be persistant and advocate strongly for your appointments and treatments. Like Marion mentioned, a lot of members have used Moffit Cancer Center and have been happy with their care provided. This is a great site ready to support and provide you with plenty of first hand information from personal experience and plenty of researching.
God Bless,
Jeff G.Dear mybdm……I guess the only input I have is what does your Husband want to do? Is this something you may have already discussed. Does he want to pass at home or at hospice facility. It’s a hard call to make ,but if I was sleeping and watching TV, having a bowel movement at least every three days and can get to the bathroom and do hygiene myself,and not having uncontrolled pain, I would feel comfortable at home, However if you are burning yourself out mentally, and physically, you have to watch out for your health as well. It sounds as though he is recieving alot of care already which basically bounces back to what does he want to do; honoring and respecting your husbands last wishes may be the deciding factor. Tough choice, but I,m sure you will make the one the is in the best interst of all.
Actually my wife and I have discussed this and I expressed my desire that when I can no longer take care of myself ,I will not put the burden and stress on my loved ones as pallative care can be quite exhuasting. In fact I have already preplanned/ made arrangements to make all go as less bumpy as possible. Just like a will, life insurance, medical directives thes should be in order healthy or not. It’s different preferences for different people. My family feel I should have a big hoop-hurray with full military honors. I just want a simple at home friends and family celebration. I don’t want the stigma of oh! he passed away in that room. Some people can’t handle that. Hard choices all the way. Unfortunatley your husband has not many more he has to make. May The Lord give you strength.God Bless You Both,
Jeff G.Thanks Everyone for your support and words of encouragement. Like my 80 year old British Mother in Law told me” Keep your pecker up” Ha! I have to laugh. English Definition: Don’t let your worries pile up on you and Stay optimistic; Keep your chin high. Different cultures and there sayings just blow me away with laughter! Have you had tea yet? (Supper) Ha! Mate would you like a fag? (cigarette) it goes on and I love it. It all came will my loving english wife of 31 years.
Cheerio, Ta Ta, Later Mate, Jolly good Day,
Jeff G.Hi Elizabeth……Sorry to hear about your Dad. There is no decisive answer at this point. It could be a numver of things, i.e. low red blood cells, High ammonia levels, cummulative effect of the chemo, pain medications, depression of which he may feel a needs to start disconnecting and blocking everyone out. at his age could be dementia. Could be the chemo effected his hearing as well. I have had and continue to have hearing problems. It could be the cancer itself spreading and effecting certain nerves. That’s about all I can think of. If hospice has been recommended they may be able to get a feel of whats is happening from observation. Elizabeth, I know this probally has not been of much help; I can only recommend love and support and touch even if it’s just a light massage or holding and slightly rubbing his hand. Wish you the best possible on this emotional journey.
God Bless,
Jeff G.Hi Nancy… Sorry about the reoccurance. It’s just doesn’t give up this monster of CC. I am happy your going to get resection, it’ll give you unknown years of survival with the Lords help. Me, Actually, after three or so years of chemo they have run out of drugs to try and radiation is not an option. So, back up and regroup and I’ll press on with building my immuno system again and hopefully that will slow things back down a little bit. Then I can decide to go with the flow or try Tarceva and a little cocktail of something. Also going to practice 100% visualization and EFT to balance the energy in my body and maybe have it do a boxing match with my cc. Ha! Wish you only the best with your up comming surgey. I’ve read nothing but great reviews of Moffit. Thumbs up and go for it girl, you’ll do just fine with that positive attitude of yours.
God Bless and Much Strength,
Jeff G.Jolene….. I’m sorry to hear your Dad is in such a state. Are you planning on asking for any hospice support at home or does he need to stay in the hospital? I too have basically been told there is not much else for me to do,although I’m not so as advance as your dad. I was hoping for some radiation, but the doctor basically said it would kill my liver. I know what your going through and it is tremendously an emotional time. That chemo will more than not suck all the infection fighting white cells right out of your body,that’s why I insisted on figrastim injections each time to keep things balanced out a little bit. So I guess Im saying if you decide on anymore chemo has filgrastim been mentioned also maintenance level antibiotic for a few days after chemo with filgrastim. Maybe with so much bone involvement it’s not advisable . Just wanted to share a little information. Be as strong as you can Daddysgirl and be sure to share your thoughts and feelings so that you don’t end up ill.
God Bless,
Jeff G.Joyce…. You need to go with your gut feeling. One week out of not eating a proper diet I would consider half way normal. He needs to drink and eat a little bit more as he can and more importantly he needs to be walking and kick those muscles back in gear. He needs to be exercising those lungs as it is known for patients not to want to eat because of residual anasthesia(SP). They shoud have given him one of those blowing toys I called it. If he has not be doing so, could explain sluggish and lack of appetite. During the week at the Family house you should se things pick up a bit better due to all the stimulation. He is most likely having depressional emotions right now as well. I know I remember the exacts words I said to my wife . That I felt like my body had been violated and I did not know if I pull my self back up out of this hole. I know as soon as I got out of the hospital my attitude changed. I then had to be readmitted back hope because of abig bag of staff infectional fluids had to be drained under ct guidance followed with isolated room for seven days. Lots of loving reminders and and setting some daily goals. As far as chemo 4-6 weeks is my opinion at least let the liver heal and completely regenerate it’s capacity to function as a whole liver again. Follow the discharge instructions as far as what to watch out for or if Butch has just a hint that something is not right go to ER and get scanned or xrayed, If I had not followed my gut instinct when I got back home I would have been a goner for sure. Actually a Hospital can be very depressing and like total Isolation feeling. Like Marion posted , breathing deep exercises, walking, eating a little more slowly. Make sure he is peeing, they should have been monitoring that. If not he might need to be relieved again by use of cath tube. His blood work must be okay if they fell he is ready for discharge. Joyce I lost 45 lbs in two weeks or less. It took me 6 months or more to gain my weight back. Things should get better one day at a time. It’ll seem like forever but when you look back it’ll seem like time flew. One last thing is a little bit of light massage. Just gently massage his upper chest with only your first two fingers in a circular motion. Ask him first as it might frustrate him. But I loved being pampered. I feel all hospitals should do that for patients free of charge.
Bless Ya Guys!
Jeff G.Hi Sandy…..Sorry to hear about your spouse. The emotional rollercoaster of this cc has struck again. You could not have described it better. May you and your spouse find the strength you need to deal with this devastating blow.
This site is full of information that I believe you are aware of. Use it to the fullest with a positive outlook. For me, the positive outlook will always be there regardless of the outcome.Best Wishes,
Jeff G.Handyman… I noticed the chemo regimen that has been recommended for your Wife. It is the regimen I just finished trying. In fact I stopped further cycles that were ordered as it accumunlatively each cycle increased my pain of tumor areas and the classic chemo side effects worsened each time. It really played havoc with my digestive trac. It also caused severe dryness of mouth and my lips started to crack. It increased fluid retention of lungsas well. I requested Ct Scan and will dicuss results with Dr. today. Just a reminder they don’t need cycle after cycle to determine if it will help. I personally think two, three cycles at the most is plenty enough to tell. I personally feel this regimen was an agtagonist that did no good but cause me more pain. Now Saying all this, we know different chemos work differently for each individual and I wish your wife the best. I just felt I needed to share my experience. Make sure you have plenty of anti nausea meds ready and on standy by. I managed to keep from vomiting with them.
Best Wishes,
Jeff G.Kris…. Gooooooooooooooooood thoughts across the ocean and straight to you. Take your meditation up a notch or two girl and try reducing your anxiety and fear. You can do it Kris! Your stronger than you give yourself credit for.
Bless Ya!
Jeff G.Hi Debrah, Just wanted to pop in and say something about EFT. I ‘ve been using EFT for about 6 months on and of using the free down load. Within the last month I have had the opportunity to have a few sessions with an EFT Practioner over the phone. My experience with the Practioner has assited me with fine tuning the technique that I now do on a daily routine. This EFT is used by practioners all over the U.S. and Europe. Stacie’s explanation really explained it well. All I can say to any one, is if you don’t try it, your missing out on a marvelous opportunity to really explore your inner self and relieve yourself of negative emotional and physical pains. The free study being offered through the Cholangiocarcinoma Organization is ubelievable to me and I’m going to take full advantage of this study. As long as I have been posting on this site, I’ve told it like it is. The bottom line is this EFT has improve the quality of (my life) without a doubt! When I first downloaded the free Introduction and started to read and learn all of the tapping points, I was a bit skeptical. Well, I’ll just say if I can make the ringing in my ears stop within seconds, make the pain in my rib bones (cancer mets)stop, and reduce my anxiety to a level where I can actually have a peaceful nights sleep; it’s remarkable. If you can be open minded, and want to take a postive approach to being able to make yourself feel better mentally and physically, I highly recommend. Believe me, I would not even take the time to type this post, if I had not already experienced the benefits I have obtained already by using EFT. This free study is open to a total of 25 slots I believe thats what I read ,well less now cause I ‘ve grabbed one of the slots. I don’t turn down anything free. Last nights session was a great introduction and explanation of the up comming study. It’s was easy… click click click and dialed a number was all I had to do. Stacie has already posted times and dates for other Study Introduction. If you want to give it a whirl then grab a slot. I also want to say thank you to Stacie, Rick and all Boards members for approving and setting up this free study. I know it took alot of time and effort to organize all this. I almost forgot to mention ; I was watching the Oprah Show the other night and she had DR. OZ on her show and guess what, the topic was about using techniques of balancing your body’s energy for a healthier you. Very similar, well actually the historical roots of how EFT came about. I said to mysel if Dr. Oz and Oprah is doing a nationally televised show on how powerful energy work is, then I’m jumping on the wagon. This is for cargivers and patients alike. I may or may not survive this beast of CC, but If I don’t need to suffer along the way. Oh Jimmy! I really got rambling this time. Better run and get things done.
Jeff G.
