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Joyce, my thoughts are with you and Butch. Take care of yourself, and hold on to each other.
Lainy, you did such an amazing thing by organizing the letter campaign and moving it along. A great big thanks!
>>>Here’s a crazy thought–does anyone have any pull or know of anyone in the television industry, specifically soap operas, weekly medical drama shows etc? What if an idea was planted in the writers’ minds about a docudrama surrounding cholangiocarcinoma? I got re-hooked on my soaps while I was caring for Dad and it seemed to me there was always some current issue that was being emphasized…some story being told. Just a kooky thought. Wish I knew of someone~my only claim to fame is that a former employee was previously the nurse for the musician Prince’s parents…oh yeah, and also I had a 4th or 5th cousin who won some money on the game show Jeopardy a jillion years ago.
I am so very happy for you! Enjoy your visit.
JoleneLainy wrote:Hi Jolene. I told Teddy about your dad and he wanted to know what year he played ball in Europe. And what arm of the services was he in?
After Korea, dad was stateside. He went overseas in 1958, and began playing ball for military at that time. “We” had 3 tours overseas and dad played ball throughout his mil.career. Dad was AirForce, but then went to some type of security service…which I am guessing is why we spent our tours overseas stationed on Army posts. After dad’s last overseas assignment, he went back AirForce, and eventually retired after 23 years. My brother remembers what dad did during that time better than I.
My brother went Navy, and chose EastPac for his brief military career. He was in Thailand, VietNam, Laos, Cambodia, Phillipines…his first assignment was the same place dad’s first assignment was in Korea, 25 years later. I am trying to get him into the doc for tests, if there is such a thing. I’m hoping that there were better preventative meds available to my brother through awareness than my dad and your Teddy had available. My cousin has already 18 years with Army, and he has been stationed in Korea and surrounding area. He’s currently stationed in Morocco.
Ya-hoo! I’m thrilled for you both! Enjoy this good news, because you deserve it.
I wish you peace for each day, and joy in the memories that you revisit, however bittersweet. You’ve been so supportive to us, I’m sending it right back to you!
Have a great weekend,
I read your entry with interest and with empathy.
My dad had the most horrendous itching, too. I (also his caregiver) would scratch his back for hours. Bless his heart, he was bedridden the last 8 months, and we compromised…I would scratch his back and he let me watch what I wanted on tv. (luckily, we enjoyed many of the same shows)! Seriously, we had some great talks during the time we had left together. I have been curious if others experienced a lot of itching, also. When we asked the docs if this was a symptom, they didn’t seem to have a clue.
I will be thinking of you and your family.
Peace be with you,
Thinking of you, Jeff, and your family. Hang in there! Happy to hear the radiation treatments are helping.
Way to go, Lisa. You said what many of us feel…and not just persons that are diagnosed with the incurable cancer…but we family/caregivers as well. I would be curious as to the response from the editor that you may receive.
Charlene and John,
May the Passion of Christ guide you through this time. I’m sending up prayers for strength. Spend each moment holding each other. God be with you and your family.
Lainy and Pauline, Thank you so much for your ideas, and for your care. We had a nice time away. Prior to leaving, I had visited a crafts store to pick up a few items, and had seen a frame for a flag ( the triangular ones ). My dad had a military funeral – he was so proud of his career in the service, and I knew mom hadn’t had the flag that was presented to her placed in a frame yet…so I purchased it. It also has a place to frame a picture of dad, and to store his medals. Turns out, she loved it, especially to be able to have his picture with the flag. I had already gotten a memorial rose pin for her to wear on her anniversary. Thank you so much for your ideas. I was afraid that it would be too depressing for her, and while it was sad, it was also tender.
Pauline, I am so sorry for the loss of your husband. It is an incredibly lonely time that leaves a such a horrific hole. This from a daughter’s perspective; I can’t even begin to imagine from a wife’s perspective. I wish you and your daughter peace and strength.
Lainy, thank you for always caring and always brightening up the lives of those around you and those of us who reach out. You and your family are in my prayers.
Hey Wendy… My dad (71 years young yet still full of life) was getting the crud knocked out of him because of the chemo. He was miserable and very vulnerable. He wasn’t on hospice…he didn’t feel he needed it yet. And, bless his heart, tried to do his normal day to day routine of all the things he enjoyed. Dad lived in my home for the last 3 months while he was receiving treatment. My mom (diagnosed with Parkinson’s and not doing well herself) was not in a position to help dad. We brought him to the hospital the week before he died because his fever spiked and he was acting really strange. Came to find out he had an infection that his body couldn’t beat, but the doctors got it under control. Unfortunately, his kidneys began to fail, and they couldn’t ‘jumpstart’ them to work properly. He died before I could bring him home. We had him for 6 months…he was given 4-6mo by the oncologist, but dad felt he could last longer through sheer will. And I really think he could’ve, too, he was such an optimist. It was the infection, I believe, that sideswiped us. And even though we knew the outcome…it really happened so quickly. I’m still in shock.
On a different note: my dad’s older brother died today from prostate cancer. My dad would call out for his brother when he woke up anxious. When I asked him why he called for his bro, dad just shrugged and said when they were kids, they did lots together. Nice to know the brothers are together again…3 weeks apart.
Try to enjoy this time with your family, even through all the hardtimes. My dad began to get his affairs in order, because my mom isn’t really able to make the best decisions…just the opposite of what you are going through. Dad was the levelheaded one…mom, not so much, God love her. But she would listen to dad. Because of dad, I have their power of attorneys, and am their health care agent for the health care directive. Dad also made sure I became my mentally/physically disabled brother’s guardian and his rep/payee. Unfortunately, we didn’t have enough time to get the house, property etc in my name…but hopefully being my mom’s POA I can get the stuff done the way dad wanted…but I digress. Does your dad listen to your mom? Perhaps you and your mom can convince your dad to get the legalities set up. Also, driving…would his doctor be able to suggest to your dad that driving may not be an option at this time? I was fortunate…dad gave up driving on his own…not his license, mind you…he still liked to think he could if he wanted to, but he knew better and it was one worry I didn’t have to manage on my own. Income: dad and I stopped by social security with a what-if scenario and we learned what my mom and disabled brother would have available to them if something were to happen to dad. So we had a sort-of idea what we could count on. Final experiences/expenses: you may want to, if you are able to, keep a mental note on what to expect when the inevitable happens. I contacted the funeral home, insurances etc for a dry run…mostly because I had to, my mom is not able to do these independently, even though for her dignity I try to let her do most everything on her own-I just watch over her-but I had an idea what to expect…I didn’t want to manage all of this on top of losing my beloved dad. The old Girl Scout ‘be prepared’ thing going on. We are no-way near finished with the finalities, but I think we are ok.
You are so right…there is so much going on, and it sounds like you are the strong one for your family. By the way, is your dad on hospice? They have assistance for the family: homecare, volunteers, counseling etc. They may be a source/resource for help for your family.
Be brave, be strong, be positive; I’m sending you all of my good thoughts and wishes.
Hi Wendy. When my dad was diagnosed with CC this past January, my whole family went into shock. Who the heck had ever heard of cc, and why are the doctors so pessimistic? When I first came across this website, I was desperate to talk with someone, anyone who understood what our family…specifically dad…was facing. And I found all the things I hoped and wished and prayed for. Certainly, this site can’t provide a cure (yet)…but I will tell you I found the best advice and the greatest cyberhugs one could ever hope for. I was able to better advocate for Dad because of the wisdom I found here…it may or may not have applied for Dad’s case, but I became educated, therefore, empowered to act. When Dad began to decline, I turned to this site for comfort, and received it. And when Dad died 3 weeks ago, I felt hugged and loved through it all. I guess thats why I continue to turn to this website…I feel I have gone through so much with my ‘cc family’ I can’t imagine not checking in at least daily. This is a frightening time for you and your family. You do have your hands full, but the people you will get to know here are wonderful, and so very helpful.
I wish you and your family peace and strength.
Congratulations, Belle, on becoming a grandmother! Such a bittersweet time, I’m sure. My thoughts and prayers are with you and your family.
Peace be with you and your family. And God’s comfort for the days ahead.
I am so sorry for your loss. I would like to think that our loved ones, your mom-my dad-and the others who have been taken recently, are communing in the stars supporting those of us who have pledged to unite in the fight against cholangiocarcinoma.
I liked your story about your mom conversing with strangers. My dad was like that, too, only it was during our many coffee dates at some coffee shop, and dad would call across the restaurant to people just walking in the door, “Hi. How the hell are ya?” I would shrink in my seat, yet the others would answer his greeting-equally loud, equally boisterous. What I wouldn’t give to have a moment like that again. Thanks for letting me share this goofy memory with you…and I’m wishing you peace. We’ll visit again, I know.