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Dear Mack Family – I read your most recent post and felt the need to respond because your feelings are almost identical to mine. It will be 11 months on February 5 that I lost the love of my life, my best friend, my precious husband of 40 years to cc. He, too, was my world and I worry because instead of feeling better, I’m feeling worse. It is getting so much harder to live without him. I don’t know if I was still numb, or in denial these past 10 months, but I feel the loss so much more now. I, too, have a hard time with people who don’t understand how I’m feeling. I, too, am tired of saying “I’m fine,” because I know that’s what they want to hear. They don’t want to hear the truth–I’m not fine, I still cry every night and my life feels like it’s falling apart. I’m so lonely. I miss him so much that it’s a physical hurt. Like you, I want him back. I don’t want to do this anymore. I need him here. He held me together, he loved me like no one else ever will, he made me feel beautiful and gave me the confidence to do things I never thought I could, he was my cheerleader, he was who I turned to when I felt alone, or sad, or happy, or just needed someone to talk to. He understood me like no one else and accepted me unconditionally. We loved spending time together and always looked forward to being with each other. We, too, called each other at least 4-5 times a day–on the way to work, during work, on the way home from work. Sometimes it was just to hear each others voices and say I love you. We loved raising our kids together and adored our grandchildren. We talked about growing old together. We would talk about how we couldn’t imagine a life without each other. How do you get over 40 years and losing a person that was such a part of you? No one understands and it seems they want to forget he even existed. I don’t think they’re unkind or unfeeling….they just don’t understand the depth of our loss. Everything has changed. Our family will never be the same–we come together but it feels so sad and so strange not to have him with us. He was the hub of our family. After 10 months, I still find myself saying out loud, over and over, “I can’t believe you’re gone, I can’t believe you’re not here.” I keep reading and hearing that it will get easier with time, but for some it must take a lot longer. I feel torn because I don’t want to feel the pain anymore and I want it to stop, yet I feel sad thinking that one day it won’t hurt so much. I know that sounds strange. Like Betty Johnson, I know that we will one day be together again and it does bring comfort. But, selfishly I guess, I want him in my world NOW, since I don’t know a world without him. I know and I’m sorry that this hasn’t helped you much. But I hope it makes you feel better knowing that it’s normal and okay to feel the grief for as long as you want, and that others are going through it, too. I pray for peace and understanding for us all.
Love and prayers,
Juanita
LD – I am so sorry for your loss. It is always so sad to read about another person losing their battle with this horrible disease. I know how difficult this time is for you and your family and hope you can get some comfort from this site and in knowing there are others who understand what you are going through and who care.
A few years ago, most of us hadn’t even heard the word cholangiocarcinoma, and now it is a word that will be a part of our vocabulary forever. I hate the word and, most of all, I hate what it’s done to me, my family, and so many others. I lost my wonderful husband of almost 40 years on March 5, 2007. Like everyone else who has experienced a loss such as this, I have been riding the roller coaster of grief…okay and thinking I can do this one minute, and overcome with sadness and loss the next. It can happen anywhere and in an instant you are consumed with sadness and such deep longing. I always say that I don’t miss my husband, I “long” for him–it is such a deep and hurting ache.
One of the hardest parts for me now has been finding people I can talk to about Dan–and believe me, I love and need to talk about him all the time. Of course, everyone was supportive and caring immediately after Dan died, but since then, it seems they are uncomfortable with the subject and rarely, if ever, mention him. And if I should talk about him, I can immediately sense how uncomfortable they are. I now have only a few people I can talk to about Dan. Everyone else wants to pretend he never existed, or think I should be “getting over it” by now. After all, it’s been almost a whole 10 months!
I found a wonderful poem on a grief website not long ago that, I think, responds to this beautifully and I’d like to share it (sorry–the writer is unknown):
GETTING OVER IT
It’s been two years, you should be over it.
What exactly is “IT?”
I’ll tell you what “IT” is…
IT is his birthday, but there is no him.
IT is realizing you’ll never again see his beautiful eyes or his beautiful smile.
IT is April 15 and you sign “filing as surviving spouse”–surviving, yes…living, no.
IT is people forgetting and you cry.
IT is people remembering and you cry.
IT is remembering and you cry.
IT is your wedding anniversary and for the first time you really understand the words, “till death do us part.”
IT is in the first glimpse of sunrise and in your last waking breath, and even finds ways to creep into your sleep and your dreams.
So, maybe when someone tells you that you should be over IT by now, you should just tell them what “IT” really is.
L.E.–the best advice I can give you is to let yourself grieve as much and for as long as you need to. Know that there is healing in your tears and sadness, as hard and as painful as it may be, you need to feel and go through the grief in order to fully heal. Don’t rush your grief and don’t let others give you a time table for it. Everyone grieves differently. When you can, take joy in the memories and all you had. And most importantly, remember and be comforted in knowing that you will one day be together again forever. Thank God for this!
With prayers for you and your family,
Juanita
Fran – I am so very sorry for your loss. This is such a difficult time for you and your family, but it sounds like you are a wonderful support system for each other. What a blessing to be holding your precious husband as he died. I lost my husband on March 5, 2007 and was also blessed to be able to lay next to him as he died. It is a moment I will never forget. It has been 9 months, but doesn’t it seem like just yesterday? I wish you peace and days of comfort knowing your husband is with you always. May God continue to bless you and your family.
Juanita
Joyce – As I read of your husband’s passing, I am again reminded of all those we have lost to this horrible, relentless, ugly disease. I am so very sorry for your loss. My husband, Dan, died on March 5, 2007, at age 58, just a couple of months before Mike’s death. He was diagnosed in August, 2005, again just two months before your husband. I’m so glad that Mike was able to continue life as normal as is possible while fighting this cancer. Like Dan, he was blessed to be able to enjoy life until almost the very end. While I miss Dan so terribly (our 40th wedding anniversary was yesterday, August 19) I feel blessed that he was relatively pain free throughout his ordeal. Like so many others have expressed, I live on with the certainty that Dan is healthy and happy again and that we will one day be together again. That is God’s promise and what Dan and I found peace in knowing. I wish for you the same peace–and all the strength you need to get through this sad time.
Juanita Uster
I have followed David and Jerry’s journey with cancer since I began reading this site, in August, 2005, when my husband was diagnosed. I am so saddened by this loss–more courageous and wonderful people taken by this horrible disease. May God give their families the peace and strength they will need to get through this very sad and difficult time. My prayers are with you all–as well as everyone who continues the battle. God Bless!
Juanita Uster
Charlene – It breaks my heart to read your messages. I, like many on this site, know what you are going through and the totally helpless feelings you have watching the one you love suffer and be slowly taken by this horrific disease. I lost my husband to cc on March 5, 2007. He survived 1 1/2 years after diagnosis and we had so many ups and downs–times we worried he wouldn’t survive his latest illness or infection and times when we were sure he was winning the battle and would survive. Oh, how we hoped and prayed. But Dan always reminded me that whatever happened, it was God’s plan and He was in control.
Dan’s only regret at the end was leaving me, his daughters and grandchildren. He wanted so bad to stay and take care of us and watch his grandbabies grow. He was only 58. Yet I am constantly reminded that he was still much older than many of the young people on this site who lost their courageous battle.
For now, try so hard not to worry about tomorrow–enjoy what ever days and moments you have left together, even if it’s just laying together watching tv or listening to music. Remind yourself that you are still together and relish every minute for as long as you can. Remember, God is in control.
Remember, too, to take care of yourself. My prayers are with you and your family.
Juanita Uster
Rick – I understand your need to deal with the spam issue, but I would hate for my registration to be deleted. My husband died of cc on March 5 and, even though he is gone, I still have the need to go on this site and read the posts of the many people I have followed since we found this site in September 2005. I feel like I know each of them and it would be such a loss to me if I could not access this site.
I may be confused as to what deleting a registration means, so if you will clarify this I would appreciate it. Thanks so much
Juanita Uster
Sarah – I am so sorry for your loss. Reading your post was in so many ways like reading about my recent loss. My husband died on March 5 of cholangiocarcinoma. While he survived for 1 1/2 years after diagnosis, my family is experiencing all the same emotions as you and your family. Even after having 18 months to “prepare,” (if there is such a thing) we are still in shock and disbelief that he is gone. We, too, still wonder if more could have been done, or if things should have been done differently. Like your mother, he was my best friend, my confidante, and the person who, for 39 years, gave me strength and made me believe in myself. The sadness and lonliness of each day is overwhelming.
We have 3 daughters, ages 32, 35 & 37, and their world has also been changed forever. They were so close to their dad and they are missing him so much. Our family has this huge hole in it that will never be filled. He was such a loving and amazing father and husband—and grandfather. We have 8 grandchildren, including twin boys that he never got to hold.
Sarah, there is little anyone can say or do to ease your grief. I have researched grief, purchased books, and attended bereavement group meetings, searching for something or someone that can tell me how to make this all go away. What I have found is that only time can help. Grief is something you need to feel and work through. I have learned to allow myself to feel the way I do and not try to push my feelings away. Some days are very bad and others are better, but no matter, just give yourself permission to feel the way you do. You need to grieve in order to go through the healing process.
Will you ever be the same again? Probably not. But that’s a good thing, because we never want to forget the people we loved and the impact they had on our life. Will we ever stop hurting so much? Yes, I’ve been told that, in time (and the amount of time is different for everyone) the horrible hurt will ease, though it will never completely go away.
I do have to mention that, for me, the knowledge that my husband is now at peace, healthy, and happier than he has ever been is very comforting. I know God is in control of our lives and that He wants us to be happy. I don’t know what His plan is for our family, but I trust in Him. I also know that one day I will see my husband again, and that, right now, he is watching over our family. I believe all of this with my whole heart and, Sarah, the peace it brings me is so wonderful. I pray that you and your family may also be comforted with this knowledge.
This is such a difficult time and I pray that your family finds the strength you need to help you through it. God Bless!
Juanita
Jeff – If my post helped you in some way, I’m so glad. It’s good to know that the pain I am feeling now can be used in a positive way. The thoughts you expressed about leaving your family unprotected are the same thoughts Dan expressed so often. He told me he wasn’t afraid to die, just afraid to leave us. He loved caring for his family and I know it was hard for him to think about leaving us alone. Dan knows, and I hope you know, too, Jeff, that we will never be alone. The love he had and that you have for your family will live on in the hearts of those that love you, as will the wonderful memories.
I received a beautiful card from one of Dan’s co-workers today that I want to share with you. The message on the card was just what I needed to hear. It reads:
“The time comes when those whom we have loved the longest and the best,
Will travel far ahead into a place of joy and rest…And we must walk a lonely path through shadows for a while,
Without a certain kindred voice,
A dear, familiar smile.Yet each day brings us nearer to horizons yet unknown,
And even when the way is dark,
We never walk alone.For memories travel with us toward the happy destination,
Where we will join our loved ones in eternal celebration.”Jeff, I believe that God sends us comfort through messengers here on earth and I believe He sent the words I needed to hear through this very kind man, and through you. I’ll pray that God sends you the miracle you need to stay with your family for a long time, and I’ll pray for strength for you and your family. God will get us all through these terrible trials. He has a plan for us—one that will end with us being with our families for eternity. No more illness, no more fear of separation. What a joy that will be!
God Bless You!
Juanita
Thanks, Terri, for the site suggestion. I did read her posts and they were helpful.
Thanks, too, to the creators of this new topic. I look forward to talking with others who have lost a loved one. Perhaps we can be of some help to each other, or at least be a place where we can write our thoughts in a safe place, knowing those that are reading understand what we are going through.Since Dan’s death a month ago (can it really be a month?), I have attended two bereavement group meetings, seen a counselor, and purchased several books on grief. Seems as if I am frantically trying to find someone who can tell me how to do this…how to manage the aching and longing I have for him….how to live without him….what will make the lonliness go away. Of course, no one can do this. I keep being told only time will make it better. But I also find myself wanting to scream that I don’t want to learn how to live without him! I don’t want to start a new life–one that does not include him.
I started work again last week and being in my office does help. It is such a busy place, with so much to do, and it does keep me distracted. Of course, the end of the day is very hard, knowing I have to go home and he won’t be there. This weekend, I took my oldest granddaughter to Disneyland for the weekend. She is 14 and is having a hard time, too–she was very close to her grandfather—and I thought getting away would help us both. We had a good time–but I still found it hard to not think of Dan and kept wishing he were with us. Can you picture someone with tears streaming down her face in the “happiest place on earth?” Couldn’t help it–we shared so many good times there. And the memories are everywhere I go–Dan and I did everything together.
I still haven’t touched his clothes–his shoes and slippers are still on the closet floor where he left them, and his bathrobe is still hanging on the hook by the shower. I can’t bring myself to move them. His office is the hardest place to go into–Dan left so many notes and it breaks my heart to read all of the scribblings he made while talking wtih doctors about test results and appointments to be made–his illness consumed so much of his life (which now makes me angry to think about.) I’ve come across several of his “to do” lists. He had so many things he wanted to accomplish before he left us. I know now why one of the last things he told me on the day he died was, “I still have so much to do.” I guess God decided he had done enough.
Someone gave me a journal after he died and I have been writing to Dan almost every day. It helps a lot and I always feel better after I have written. Sometimes my pen just flies across the page as I pour out all my thoughts and feelings. As much as I look forward to writing to him, I am also sad that after over 40 years of having him with me to talk to, all I have left now is a journal to share my thoughts with. It’s such a lonely feeling and all this is still so unbelievable.
Sorry for going on and on and being such a “downer.” It has been a long day and I’m just missing Dan so much. I hope all of you that are missing your loved ones, too, find peace and understanding. I know I will get there one day….it just seems so hard right now.
Juanita
My heartfelt thanks to all of you for your kind and comforting words. They are especially meaningful, since I know you are all still in the midst of your own grief. Your stories of loss and the sadness you are going through is heartbreaking. I pray you find the strength you need to get through this time.
The days have been so hard and lonely. I can’t believe it’s been almost 3 weeks since Dan died. Each day I go through the motions of living, but I think I’m still numb and haven’t grasped the thought completely that Dan is gone. What does keep me going is the certainty that I will one day be with him again. Betty, you’re right, that will be the most wonderful reunion.
My other comfort is knowing that Dan is with God now, and is healthy and no longer suffering. He would want me to be happy–and I know God wants us all to be happy. He will give us the strength we need to get past our grief and to get on with life.
Again, thank you all for your kind words. I will continue to keep you all in my prayers. Our memories may be painful right now, but I know they will one day be a source of comfort. God Bless Each of You!
Juanita
Betty & Joyce – Thank you so much for your kind words. I have to say that this is much harder than I could have ever imagined. I miss Dan so terribly and the sadness I feel is overwhelming. Life looms ahead like a dark, empty tunnel. I have such a wonderful family and friends, yet I feel so alone. I can’t believe I’ll never see him again or hear his voice. I can’t believe the fight is over and he is gone. The pain is unbelievable. There is so much to do, yet I can’t bring myself to get anything done. Can you share something you do that helps you through your grief? We all share stories about the illness and what we’re doing to fight the disease, but after the person dies, it seems there is nothing here to help. The grieving process is a huge part of what this all is about. I think we can all help each other get through this, since sadly, there have been many that have come to this point. I know this site is about cholangio and helping and learning from each other. But I think we can also help each other when we finally face the inevitable.
Sorry to ramble. It’s been a bad morning. Hope you are both finding happiness in your days. I think I have a long way to go yet. Thanks for listening.
Juanita
It has been a long time since I first posted our great PET scan results. Unfortunately, our happiness was short lived. Shortly after my post, Dan was hospitalized several times with pneumonia, heart irregularities caused by fluid accumulation in his lungs, and a severe infection. It wasn’t long after that, that he began having difficulty swallowing. An endoscopy showed a tumor in his stomach–this after a PET/CT showed no new tumors. In fact, a recent CT scan still shows no tumors in his abdomen. The only way the tumor can be seen is through an endoscopy.
In December, Dan had a medi-port inserted and began TPN (intravenous) feedings. He has been unable to even swallow fluids. Worse than that is the constant vomiting and nausea–regardless of whether he trys to eat or not. This goes on all day and all night. It has been horrible watching him suffer and be so miserable. In early February, Dan decided to undero radiation in the hopes of shrinking the tumor so he could get some relief and hopefully, allow him to eat again. He was warned that the risks of this treatment were high because he had already been radiated in this area in 1991 when he had stomach cancer. Generally, you can’t receive radiation in the same place twice, but since it’s been almost 16 years, the radiologist thought low dose radiation may be safe for him. It wasn’t. Dan had 18 radiation treatments and the day after his last treatment he began to bleed internally. In the emergency room, the doctor told us he was dying and to say goodbye. It was an emotional nightmare for our family. Finally, an angel doctor came into his room and said he would like to begin blood transfusions and see if he could find the cause of the bleeding and try and stop it. Through an endoscopy, he found two huge bleeding ulcers, which he cauterized. The next day, Dan began to bleed again and this time it was his stomach tumor bleeding. Again it was cauterized and the bleeding stopped.
After a few days and at least 8 blood transfusions, Dan was released from the hospital. He was home only one day when he collapsed at home. His blood pressure dropped to 40 over 20. He was rushed by ambulance to the hospital where an emergency endoscopy was done and more cauterization to stop internal bleeding. He was placed in intensive care. He had another bleed in the hospital and this time 3 areas of his stomach were cauterized. His hemoglobin dropped to 6.1. On top of it all, he developed septic shock–his white count went up to 48. We were again told that he would die and that there was nothing they could do for him and our family went through another day of saying goodbye. We prayed for a miracle and, as of today, we think we have received one. As of yesterday, the bleeding has stopped and his white count is now down to 28. His hemoglobin is up to 12.1. He has been moved out of ICU. We know he is not out of the woods, is very weak, and still has to fight this infection. More bleeding is still a possibility and he is being monitored closely for this. But today he was awake and responsive and able to eat a little soft food—and was able to swallow it and keep it down!
Dan is a true miracle in so many ways. He survived stomach cancer in 1991, non-hodgkins lymphoma in 1996, and several severe infections and medical emergencies caused by cholangio–though none as severe as his most recent set back. We truly thought he would not be here today and thank God with all our hearts for the extra gift of time he has given us.
For those of you that aren’t aware, Dan was diagnosed with cholangio in August 2005. He began chemotherapy in November 2005–Gemzar and Xeloda. While on radiation, he continued low dose chemo with Gemzar only, since he is unable to swallow the Xeloda pills. Dan’s goal is to come home and be able to eat again–and we pray he will be able to reach this goal. His gastroenterologist said that it may be possible to insert a stent in his stomach that would allow food to bypass the tumor. Of course, Dan needs to recover from the infection and bleeding before this can be done. We have not lost hope that this can still be done and that Dan will eat again and can continue chemo treatments.
I read this site almost daily but have never read about cholangio spreading to the stomach with anyone else. Has anyone experienced this and, if so, what treatments have you done? We expected a lot of things to happen with this cholangio, but never thought his stomach would be blocked by a tumor. It is so much worse than anything we could have imagined.
I know this post is long and I apologize for going on and on. So much has happened, yet our family still feels blessed and incredibly thankful to God for all he has given us. A happy note—our middle daughter gave birth to twin boys about 6 weeks ago. They were premature and have been in NICU, but we learned today they may come home tomorrow! Now we just need Dan to come home soon so he can meet his new little grandbabies and given them his special blessing.
Our love, prayers, and good thoughts go out to all of you battling this terrible disease, and to your families who share this journey with you. Thank you for sharing with us—you give us all so much strength.
Dan saw the cardiologist today and had his echocardiogram—more great news! No cancer in the sac surrounding his heart!! Basically, the PET and echo show no active cancer in him at all!!
Next stop…USC to have Dr. Lentz review his blood tests (CA-19-9 continues to stay low and is down to 67) and scans and give us his opinion. Hopefully, we’ll be able to see him next week.
God is so good to us! We will forever thank Him for this gift of time and hope. We continue to keep you all in our prayers–please pray for Dan, as well.
Juanita
I just had to write to let you know that my husband had symptoms similar to your father around 6-7 months ago. He was retaining so much fluid he could hardly walk (the doctor said his kidneys and liver were failing), he had internal bleeding, blood clots, and also has two stents in place to help the bile drain. He was so sick that the oncologist told us to call hospice. Well, I’m happy to tell you that he has recovered from these ailments–the swelling in his legs and stomach is gone, his lungs have remained clear of fluids, the internal bleeding stopped and the clots have disappeared. His most recent CT scan shows the tumor has shrunk about 50% and no new tumor growth can be seen. A PET scan is planned for this Friday and we’ll know then if this is true. Whatever the results, we are happy for the extra time we’ve been given and will never give up hoping for more.
My message is this–if your father is willing to undergo chemo, support him. Don’t give up hope and stay positive–your father still has a chance. Chemo may help and there are always miracles to hope for.
We will add you and your father to our prayers. Good luck!
