October 16, 2011 at 11:19 pm #53134pamSpectator
Pamela, I’m a Pamela too! I read your Caring Bridge blog and want to thank you for letting us know how Lauren is doing. I read your posts and send prayers every day to you all. Lauren is such a beautiful girl and your family photos show you are so close. My heart aches for you all. I don’t post very often, but I want to say I really care. PamOctober 16, 2011 at 10:21 pm #53133
Thanks so much Lainy and Marion. You two are my shining angels on this sight. Marion- I took the period off the end of her caring bridge sight at the end of my sentence and it works now. Thanks for pointing that out to me. Everyone on this sight is just so caring and special. I have never experienced anything like it. So much love. I guess it’s because we are all in the same boat and can all feel each other’s pain. Bless you both and continue with your words of wisdom. I love to hear from you!
-PamOctober 16, 2011 at 9:57 pm #53132marionsModerator
Hello Pamela….know that Lauren is on our minds and in our hearts. Pamela, I had problems opening the link however, the link posted in the “Blog” section works just fine. (Don’t know why that is so.)
You are so right in that our kids will always be that….yes, they grow in to adults, but for us parents they continue to by our kids. Lauren appears to have things well under control and the fact that her pain has diminished makes things much more hopeful.
It is difficult to stay strong, but when put to the test surprisingly we do rise to the occasion. And, you are doing it also. Know that we are here for you. This is the place where you don’t have to hold back on your thoughts and fears. We understand.
I am wishing for continued strengths for Lauren and your wonderful family.
All my best wishes (coupled with tons of hugs)
MarionOctober 16, 2011 at 9:51 pm #53131lainySpectator
Dear Pam, my daughter just turned 49 and I could not even imagine life without her! It sounds to me like you are all doing very well under the circumstances. I think its just fine to call Lauren a kid, 25 is still a kid to me! I am so happy that she is sailing right through the Chemo, that is wonderful. I think you are showing a great amount of strength and I would just say, carry on Lauren’s family, carry on.October 16, 2011 at 8:46 pm #53130
Hi everyone. Thanks for all your kind words. I started a blog on Caring Bridge. That is why I don’t write on here too much. It is http://www.caringbridge.org/visit/laurenkunklier I think a few people on here have visited the sight because I mentioned it in the blog section of this website. But, believe me, in all my spare time I do check out this website. It is so informative. It used to make me so sad because so many members have passed away. I must have toughened up some because I can read things without crying. Believe me, I still cry at a lot of posts, but not as much on a daily basis. I just want to learn as much as I can and be informed so I can question the doctors and make sure they are doing everything they can for my daughter. Lauren still does not want to know too much about her cancer. I think it scares her too much. She just wants to be a regular kid! I know she is 25, but she is still a kid. She asks me questions if she has them and I answer her truthfully. I guess if you think about it, why does she need to know all the bad stuff. Just let her live life to the fullest and enjoy things while she is still able to. She is still doing well. She has had 3 rounds of chemo. Not too many bad side effects. She gets tired the week of her chemo, but other than that not too much else. A headache now and then, and pain in her right shoulder. I am so thankful she has not had nausea like most get. A little now and then, but nothing major. She has never had jaundice or itching. She had side pain before being diagnosed. Now, she doesn’t have that much anymore. I am hoping that means her tumors are shrinking. At least we get to spend a lot of time with her. I get the saddest when I think of how life would be without her. Not hearing her laugh, not seeing her beautiful face, not having her to sit next to me on the beach, not seeing her walk down the aisle… We were always the lucky family. Sure, we struggled when we were first married. Our children were all healthy and happy kids. They never gave us trouble. We were a happy little family. If anything happens to Lauren, there will be a huge hole in our world. We try to be strong, but it is harder than I ever imagined. Thank you all for your support. I know you all know just how I am feeling. I wouldn’t wish this on anybody. Bless each and every one of you dear people.
Love, PamSeptember 26, 2011 at 12:34 am #53127katielinnMember
I just wanted to say how sorry I was to read about your daughter Lauren’s diagnosis. My mom was diagnosed in July of this year (she’s only 57) and it has been a roller coaster thus far. I too always think how I wish I could take her place..I think a lot of caregivers feel that way. It’s the worst thing ever to see a person you love more than anything in the world, be in pain It sounds like she is a fighter though, so try to stay positive that she could be the one to beat this awful cancer!! I’ll keep you both in my thoughts and prayers.
~KatieSeptember 25, 2011 at 11:06 pm #53129peggypMember
I am so sorry to hear about your daughter Lauren’s diagnosis. My husband John was diagnosed a little over three years ago. His only symptom was a small pain in his right side, too. His doctor thought it might be a kidney stone, but after CT scan showed a huge mass in his liver, we went through numerous scans and tests plus biopsies and he was operated on at UVA within a three-week timeframe. His surgeon called me from the operating room and said they were dealing with more than he had anticipated. The surgeon ended up removing 70 percent of his liver, his right kidney, gallbladder, part of his stomach and colon. They told us this was his only option and that chemo or radiation weren’t options. The surgeon thought he had gotten everything but that was not the case. On his 3-month scans, two spots showed up on the part of the liver that was left. Thinking it was blood spots from the surgery, they waited until his next 3-month scans and by that time he had multiple tumors. Asking what his options were, the doctors were at a loss. They finally decided to treat him with the chemo they use on metastatic colon cancer patients. It sounds like what your daughter is on because after receiving chemo at the cancer center, he was also hooked up to a pump for 48 hours at home. He did fairly well on this until his 17th treatment and he had a very bad reaction to it. His only complaints were his sensitivity to cold, headache, constipation, weakness and tiredness. He is now on gemzar/cisplatin/avastin but has never been able to get it like he’s supposed to because his counts drop way too low. His oncologist is now checking to see if there are any clinical trials he could get in. He says we are running out of options. John keeps busy doing whatever he can, and rest when he needs to. I think attitude plays a major role in how people react to this cancer. Just continue to give Lauren all the support that I know you will and help her keep a fighting spirit. I am now checking into other alternative treatments because I’m not ready to give up on the love of my life. We just celebrated our 36th anniversary, and I hope to see many more. My prayers are with you and your family and especially Lauren. May God bless each of you, PeggyPSeptember 25, 2011 at 8:02 pm #53128jathy1125Spectator
Pam-You are an amazing mom. Your journey is so dejavu. I have posted on here many times that I am alive because my doctor was on vacation! I too had to hunt down my test results, and the only reason I did was because I was so itchy. It was by the grace of God that I ended up in Dr. William Chapman’s care. I was told it was unoperable and 6-8 to live with out a transplant. Have you ever discussed transplant. My tumor was unressecatable also. Please discuss with a doctor who believes it is an option.
Lots of prayers-CathySeptember 25, 2011 at 3:13 pm #53126mnSpectator
My whole post just disappeared while I was typing, so I will try again…maybe a shorter version.
Dear Pamela, I am so sorry that both you and your daughter are on this journey. She is so young to be having to deal with this. Much too young. I feel my mom, at the age of 63, is too young for this. However, this is also what gets my mom through this…knowing that it isn’t me or her grand daughter going through this. You both will be in our thoughts and prayers. I just wanted to let you know, I try so hard to find common characteristics in these cases. The only thing I can seem to come up with is that your daughter really has her age on her side. It seems that younger adults, say under 50, respond better to treatments. Again, this is just from the reading I have done. I am going to pass on anther message board that has helped me also.
There is a lady that is more than happy to share her story. She was diagnosed and given 6 months as her tumor was unresctable, she is here to tell her story 5 1/2 years later. I do not know where I would be if it wasn’t for this board and that board. Everyone has been so helpful.
As for your crying, I think that is normal. It is all I do when I am by myself. And I like to be by myself a lot when I am not with my mother. However, I do notice that I do not cry as much when the doctors are not around. Since my mom got out of the hospital a few weeks ago and I met with her main doctor, I was crying non stop. We all would cry together. then we met with our second opinion doctor who told us the same thing, and I kept crying. When I got the letters from the doctors, to give to my work, letting them know that Ineed to help care for my mother, cried constantly. However, I stay with my mom two days during the work week and my dad takes over the other 3 days. weekends we are always coming and going. I see her, and yesterday she was doing so much better. I don’t understand the doctors and there time lines and everything just seems okay and all will be well.
You can’t let the doctors decide how you should feel…they just bring you down, most of the time. Even my family members that are doctors do the same.
Just know that you have lots of people here that are rooting for your daughter…and you too, to give you the strength you will need.
Hugs to you.September 25, 2011 at 2:29 pm #53125lainySpectator
Pam, sadly what you are feeling is our new normal. When I felt exceptionally sad I would get in the car, put on the CD of Mama Mia and sing loud until I couldn’t anymore, all the time with tears running down my face but it worked. I came back home about 20 minutes later and felt ready to take it all on again. As care takers we have to keep ourselves strong mentally as well as physically and we also have to take care of ourselves.
I was maybe too strong as sometimes I wonder if my husband knew what I really felt….but then again I am sure he did. Best of luck on this round and remember one thing…Laruen still has youth on her side. I guess that’s what is so sad, she is too young but has better chances because of that. Bless you both.September 25, 2011 at 1:29 pm #53124
Off to Michigan today for Lauren’s second round of chemo. How do I quit crying? Some days I am so strong, but then out of the blue something will set me off and I cry and cry. This whole cancer thing just breaks my heart. I would trade places with my daughter in a heartbeat. What did she or any of you ever do to deserve this? It’s so unfair. Bless you all. -PamSeptember 25, 2011 at 1:24 pm #53123
Thanks for your post, Susie. I sent you an e-mail. -PamSeptember 24, 2011 at 10:07 pm #53122wallsm1Spectator
Hi. I am 31 years old and have intrahepatic cholangiocarcinoma. I had a liver resection in May of this year and now get chemo and will be starting radiation soon. I just wanted to say hello and let you know there are people on this site around your daughter’s age. I also presented with what I assumed was gallbladder pain and was blown off by the medical system. Dr’s just seemed to assume it was nothing because of my age. Anyway, I wish you both the best and if there is anything I can do to help please feel free to outreach. Although I live in Oregon now, I am originally from Pittsburgh, PA and received my surgery at UPMC. So, not too far from where you are located.
SusieSeptember 24, 2011 at 4:53 pm #53121marionsModerator
Thanks for the correction, Pam. (Need to go to bed a bit earlier; around midnight my brain switches to shut down mode.)
Please, let your sweet Lauren know that a tidal wave of support is coming her way. We are in this together.
All my best wishes,
MarionSeptember 24, 2011 at 11:32 am #53120
Hi Marion. Thanks for your kindness and words of wisdom. My daughter, Lauren, is the one with cancer. Simple mistake. I’m sure I was rambling on my post and names were confused. Anyway, thank you. -Pam
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