Pam: Haven't posted much in the last couple of years but want you to know that I check in frequently. I have been following Laurens' blog and just want you to know that I add my prayers daily. Stay strong, you are a remarkable family! Cheryl
I haven't posted in a while but wanted to wish everyone a Happy Easter. For the "believers", I wanted to share with you all, my "dream" last night. First, I'll fill you in on what has been happening lately. As you know, my soulmate (husband of 34 years) Herb passed away June 25, 2011, at the age of 60 after a 17 month battle with Klatskins C.C. Times have been a bit tough occasionally but thanks to the fact that our family (2 daughters and 1 son and 2 grandchildren)are extremely close, when any one of us have a hard day the others "step in"! Before Herb passed, he asked me to take my mother (they were very close) to Hawaii for her next birthday (somewhere she has been wanting to visit for a number of years). Long story short, my sister, my mother and I went to Waikiki for 12 days in March. Perhaps it was too soon, perhaps it was missing the children, I'm not sure but although the trip was pleasant, I must admit to not feeling the "joy" that Herb and I always experienced in new places, something was missing! Since we returned, I have been a bit down, wondering if I will ever feel the "joy" again. Don't get me wrong, I smile, I laugh, my grandchildren make me feel happy..even joyful..just a different happy. Last night, I fell asleep and about 3 hours later (I was asleep)in my "dream" I felt an actual presence (the mattress went down). I was on my side, and I asked who was there. Herb responded:"its just me" and I felt him hold me close. I actually said.."Herb, how is this possible, you're gone?" I took his face in my hands and felt the stubble, he looked me in the eyes and said "we'll talk about that later and he kissed me.I can even describe what he was wearing..an outfit I used to tease him about when we were young! I woke up then, with a smile on my face, and the absolute knowledge that he will always be there for me. Maybe it was a dream...maybe it was a visit. All I know is that I looked at the world a bit differently today, the sun was a bit warmer, the colors a bit brighter. Spring, the season of rebirth and renewal and perhaps the return of "joy". I wish "visits" for all those that have lost someone and hope for all those fighting the battle. God Bless you all and enjoy the Spring.
Lainy - I truly believe and will someday fill you in on my experiences. I am at work right now so must sign off!
Nancy: Have just read your post and am praying for the "stent blockage'. Don't let it get you down, just the rollercoaster needing to be oiled. My thoughts and prayers are with you today and always.
I am so sorry to hear that Harmonys' journey on earth has come to an end. Her inspiration and spirit will be truly missed on this site. As a parent, I can only imagine the loss you are feeling right now. May the angels surround with you with light and in time I pray that the memories you made with your daughter will fill you all with warmth. Thanks for posting, it must have been really difficult. You and your family are in my thoughts and prayers!
Sorry we're late posting but indeed we wish Doug a very, very Happy 60th. Herb celebrated his 60th on Feb 24 and I know exactly what you mean by these amazing people getting past everything to enjoy their special days and allow us to celebrate with them. Now for Saturday. I hope you have wonderful weather, good, healthy day for Doug and relaxed,beautiful day of celebration for all. Enjoy the day and the wonderful promises for the future that it creates.
My thoughts are with your family often!
Welcome to the site that as everyone says you hate to have to visit! First your photos are beautiful. What a wonderful family. Second, congratulations on the "whipple" being a success. As the wife (caregiver) of a wonderful man who was unable to have surgery ... I consider this a "miracle". Please don't dwell on what could come, enjoy your health as it gets better each day. As you face each hurdle, you will find it gets easier. Don't let this awful disease dictate how you live your life. Face each hurdle, jump it and go on living and enjoying your family with a new appreciation of how truly amazing leach day, each season and each year can be. I pray your recovery will be swift.
P.S. My husband Herb and I are in Calgary as well.
Kris: Just wanted to wish you the best of luck on Tuesday and congratulate you for doing what you and Dr. Fong feel is the best thing. I will definitely be looking for your post under the "Good News"! We are all praying this goes really well for you. Stay positive and be well.
Re: Why a 3rd & 4th Opinion is Very Important!! (10 replies, posted in Good News / What's Working)
I always knew it, but am very glad that you were able to prove it!! Miracles do happen ... congratulations. Hope everything goes well and I agree, everyone in this organization and on this site are outstanding and caring !!!
So glad you posted...I have been wondering how you and Doug are doing. I'm really pleased to hear that all is going well. I have returned to work as well and know how exhausting it can be! Glad that wedding preparations are coming along, such a wonderful event to look forward to and spring weddings are so beautiful. Spring has sprung in Calgary, apparently! We got about 10 inches of snow on Friday and Saturday but today dawned with bright sun and the snow is melting ...typical April in Canada!!! It gives you even more to look foward to. Anyways Nancy, your family are on my mind lots and I wish for you all a wonderful spring, and exciting (and peaceful) preparation for the big day.
Re: New and Stage 4 CC - surgery discovered rampant spread - help? (13 replies, posted in Introductions!)
We are in Calgary as well. Herb was told in Feb of 2010 that he should go home and "get his affairs in order". That was by a surgeon who was unable to operate due to the extensive spread of CC. Herb has Stage 4 Klatskins carcinoma with spread throughout the liver, gallbladder and spots in his lung. Thanks to a wonderful oncologist (who told us "there is probably no cure but with Chemo and other measures (ie bile duct drain - etc) we should be able to buy you some valuable, quality time". Herb has 2 external drains (one in the bile duct and 1 in the gallbladder and also a stent. He has been through 1 round (8 x 3wk round of Gemcitibine and Cysplatin - 2wks of chemo - one off). Although Herb has way less energy, has lost weight and is now on Fentanyl patches for pain (which keep pain well controlled but not "dopey", he is, as he says "Doing great". His last few scans have shown no progression of the disease, which to us is great news. No-one can tell you how long you have and if they do ...Don't trust them" Our family has adopted the attitude - Herb is not dying of cancer...he is living with cancer and we are all enjoying every moment. We no longer worry about "how much time is left", instead we realize how blessed we are to have been given the opportunity to "Live like we are dying" all together. If you ever feel the need to talk to someone ...feel free to e-mail.
My husband is on Fentanyl Patchs (400 mcg) which is slow release and changed every 72 hours. He also takes 24 mgms of immediate release hydromorphone tabs every hour as necessary (usually twice a day). Before the Fentanyl patches, we were having trouble controlling his pain but everything seems good now. It did take a few days for the Palliative care team to come up with the correct dosage and it was constantly adjusted until he was only taking a couple of doses of oral meds a day. Good luck
P.S. On the Fentanyl patches Herb is not "dopey" at all...completely with it!
Jen: You said it all baby girl. Happy birthday to my wonderful husband. Love you ...Mom (Cheryl)
Lainy and Nancy:
I so admire you both and only hope that, when the time comes, I will be as resilient and strong as you are! Time will tell ... I am thinking of you both.
Nancy - Unfortunately, I do know what "blowing snow" is. Glad to hear that Dougs labs and overall wellness have improved. As you know, you and I (Herb and Doug) are very similiar in age, number of years married, grandchildren and much to my dismay, both our husbands have been diagnosed with "Stage 4 C.C." This was not exactly the "Retirement Plan" that either of us expected but "it is what it is"!
Herbs short term memory was also affected, especially when he was on Chemo. I am sorry to hear that there has been progression but glad they are going to continue chemo! Herbs disease has also progressed but not at a rapid pace. He recently had a repeat CT of chest, abdomen and pelvis and we see the oncologist Feb. 25 (will get results at that time). Please Nancy, keep us posted and congratulations on the engagement. Continue to enjoy, one day at a time! Every day is another for the "book of memories"!
Andie: My sincere condolences to you and your family. Thank god for the pain free transition. Please know that love should never drag you down. In the coming days, I pray, that the memory of your fathers' love for his family will fill you with warmth, surround you with light and propel you forward. Take care of each other and know that the prayers of others are with you all.
Margaret - So glad to hear you and Tom are home!! Even in the frustration that new developments can cause, there is always light.Somehow, it takes a "little jolt" to make us aware, again, of how wonderful time at home with our loved ones is. There is a special peace at home. Enjoy !!
Thanks for your warm welcome. I read, smile, laugh and weep almost daily as I read the posts. It is definitely a much needed outlet at times. Thank you all for your warmth, caring and sharing of your lives as caregivers, survivors and "afflicted". I find myself feeling like you are all family.
Margaret: I empathize totally with your frustration! Two weeks ago, Herb and I were leaving an appt. with the surgeon (who decided that Herbs second external drain into the gallbladder should remain in .. as surgery would be life threatening)we walked out of the hospital and Herb slipped and fell. Off we went to Emerg and sure enough ... he broke his arm near the shoulder "through and through". You have to wonder, when is enough enough? Hoping you hear very soon and both you and Tom will get the immediate attention you need. Thinking of you both and wishing Tom the best.
P.S. Herb is, in his usual manner, coping well ..his attitude is .. at least I didn't break my hip!
Favoritedaughter: Please check with your Dr. regarding meds for the scans. Herb takes an Ativan (relaxs him) before his scans. Also, he recently fell and broke his shoulder ... he had a scheduled CT scan of chest, abdomen and pelvis three days later. The technician told Herb that he didn't have to put his arm above his head or lay directly on his back. He said that they are usually able to make adaptions as necessary (ie truama pts) and as appropriate with individual pts. Discuss all options with Dr. and radiology.
Andie: You and your family are constantly in my prayers.So sorry that your dad has taken a turn for the worse. I am hoping you will all be granted the strength to deal with what may lay ahead. Enjoy each smile, moment and touch as they can all be added to your "book of memories".
Cheryl (Jennifers' mom)
Praying for Mom: My thoughts and prayers are with you and your family. May the angels surround you all and grant you light and peace in this time of darkness.
I was just wondering if anyone is aware of any studies or links to Prednisone usage and C.C. In my research as to "risks"for CC, I have noticed increased incidence in patients with history of ulcerative colitis and cholangitis. Generally, most studies seem to say that researchers feel that CC may be auto-immune related if there is no other related history. I know that patients with ulcerative colitis and cholangitis are often given Prednisone for flare-ups. Although he has no previous history, Herb was on fairly long term Prednisone for an anaphylactic reaction to wasps (which did play havoc with his immune system for a couple of years), it just sets you to wondering!
Not sure if this applies in the U.S. - but in Canada ...please read your coverage info carefully. We are in Calgary and Herbs policy covers ostomy supplies. If you have an external drain (as Herb does) ostomy supplies are covered. Blue Cross will not inform you of this fact but by definition all supplies for external drains (drain dressings, pre-load saline syringes, bags, etc.) are ostomy supplies and will be covered on appeal.
I am new to post...but have been following this board since Herbs' diagnosis on Jan 21, 2010. My daughters Jen S. and Herbsgirl have actively participated and I have been happy just following their posts. As you are all aware, Herb has inoperable, Stage 4 Klatskins tumor. He was sent home a year ago and told by the surgeon to get his affairs in order as he probably had only months to live. A year later, thanks to a wonderful Oncologist, he has been really holding his own! We have had many trials over the past year but we continue to celebrate many wonderful times together. Herb is such an inspiration to all. He has spent the last year trying to prepare his family and friends for the time when his journey will end. I am so proud of my children (2 daughters, 1 son) for how they have drawn close to their dad and me.They have shown Herb that when the end comes...they will be here for their mom and he need not worry. I feel compelled to post due to all the recent losses. Lainy .. I have followed Teddys' story and feel sure that he and Herb will enjoy a wonderful meal together at some point, Hans .. the loss of Kris (and her bubbly, bright energy) is truly missed , Rick Kamp..you so remind me of Herb. His biggest frustration has been his lack of energy to "get things done". For you I have a message ...please realize that although "things"may not be complete, you have completed your family with your love! That is all thats truly important. Cheryl (Herbs wife)