Thursday, August 30, 2012

One Year Since Diagnosis

It has been one year since Lauren was diagnosed with Cholangiocarcinoma. In some ways it seems like only yesterday, and sometimes it seems like forever. I would never wish this disease on anybody. It is just so awful. Our happy life is not what it used to be and things I used to think were such a big deal don't even matter. We all try and stay positive and upbeat about everything, but it is hard when you go to bed thinking about your poor daughter with cancer and wake up doing the same. I know everyone dies sometime, but not at 26 with their whole life ahead of them. It is just not fair. I remember sitting in Dr. Z's office last year and him telling us that 0% of people live after 5 years with this disease without a resection and most die within 6-12 months. Can you imagine being told something like that? Lauren is an amazing girl. But, I know she is so sad inside. All she ever wanted to be was a wife and a mother. Who knows if that will ever be possible. We still have hope every day that she will get better and defy the odds. She already has lived longer than most with this cancer, so we are blessed with every new day.

Lauren wanted to celebrate her one year of being a survivor with the family which was yesterday, Aug. 29th. So, she chose to go out to dinner at D'Agnese's in Fairlawn. It is an Italian restaurant that she and Gio have been to and they were nice enough to donate to Lauren's benefit back in Feb. It was very good and we had a nice time. Stephanie is so sweet and gave Lauren a silver bracelet with an inscription about things cancer can't do. I'm sure Lauren will wear it all the time. If you like garlic and cheese, this restaurant is the place for you! Lauren didn't eat very much. She has been so tired lately and not real hungry. We think it is from her oral chemo called Xeloda. She seems a lot better on the week in between treatments when she doesn't have to take it. We had a waiter that was quite foo-foo and the way he recited the specials just cracked me up. But, the food was delicious, so that's all that really mattered. Her are a few pic from our nice dinner.

Lauren with her new dark brown hair. She looks beautiful but also a little tired.


Gio, Ryan, and Stephanie


Mark and I

Lauren is having a second celebration tonight with their friends, Dan and Melissa tonight at Macaroni Grill.

Lauren and I went to breakfast with our friends Monday morning. There was only Lauren and myself, Dawn, Debbie J, and Ruth this time. We still had fun and always have great food. Lauren had a wave of nausea hit her at the table and I never even knew until she told me later. She didn't eat very much and wanted me to eat her bacon, but I couldn't because I was too full. She must really not have felt good because their bacon is the best.

We went to the Portage County Fair last Saturday. It was really hot and smelly. Lauren had a lot of energy and walked around looking at stuff for a long time. Mark and Gio enjoyed looking at the tractors. We didn't look at too many animals because it was just too hot. We stayed long enough for Mark to get his fill of fair food!! Two hot dogs on a stick (he bought me one after I said I didn't want one, so he had to eat it too), a stromboli, 3 of my fried mushrooms, an elephant ear, and a caramel apple. Geez, he went kind of light this year!! Lauren took a few pics with her camera. I wasn't in the mood to lug mine around. I get a bit grumpy when I am hot.












 
 

We also went to the Brown's pre-season game last Friday night. That was just not our night. We got there about a half hour after the game started because we were in a huge traffic jam on the highway on the way up. We had excellent parking right next to the stadium which was awesome. We went in on the wrong end of the stadium and found out we would have to walk all the way to the other side. We asked if we could get a wheelchair for Lauren since she had just had chemo and was so tired and the attendant said we would have to go all the way back downstairs to get one. I thought that was terrible that she couldn't call on her walkie talkie to get one for poor Wo. We had been given four tickets with a great parking pass to be in a suite by Mark's boss, Rich Klaben. He is always so thoughtful and wanted Lauren to go to the game since she loves the Browns. Thank you so much, Rich. We really appreciate the wonderful gesture. Since we got there a little late, there was no place to sit, so we watched on the tv in the suite until half time and some people left. We got to go outside and sit for the rest of the game, which was good. Too bad the Browns did not play very well, but we were happy to have been given such an opportunity that most people never get. I forgot to take my camera, so I am sorry there are no pictures.

As you can see, we have had a busy week. We will be going to Michigan on Sept. 11 for a CT scan to see if the chemo is working. Please pray that there is improvement. Thanks to all of you that care about Wo. We all appreciate you very much. Love, -Pam
 
 

12 comments:

  1. Lauren continues to amaze me with her strength. I am so inspired by her and all of your strength in the face of this illness. I hope this new medicine is doing the trick! 9/11 will be easy to remember to send special prayers up. Have a good Labor Day weekend, you guys! Lori Vogt

    ReplyDelete
  2. Love the new hair color Lauren!!! I love going to fairs...and I love the food too!!! The one year anniversary is definitely a thing to celebrate. If there is anything to celebrate with cancer...it's beating the odds!!! I can see Mark has his Cholangiocarcinoma bracelet on...yay!!! Do you guys get asked about those when you are out and about? I always do. It gives me a chance to let people know about the cancer...and to talk about Shirley :0)

    Love you guys...have a great week!

    ReplyDelete
    Replies
    1. Is Shirley your beautiful red headed sister that passed away? I've read your wonderful blog on cholangiocarcinoma.org. Always wondered how you were after you stopped writing.

      Delete
    2. Yes Shirley is my beautiful red headed sister!!! I am o.k. I try to stay connected with wonderful people from that website...like Pam and Lauren because I know that I will see someone beat this horrible cancer. Thank you for reading my blog :0)

      Delete
  3. Tell Lauren to hang in there,my sister is going on her 3th year they gave her 6 mounth but she is still with us.Much love to you all♥

    ReplyDelete
  4. Hi Pam,
    My name is Debby and I have been following your blog and praying for your precious daughter.
    My beloved husband was a victim of cholangiocarcinoma. I know all too well every single thing you are describing as the care giver, except the pain of watching a child suffer with this beast.
    I want you to know, mother to mother, I pray for you as well in your role. Sometimes I just needed someone to hold me in prayer or in their arms. It's a most difficult role- hopeful and practical at the same time.
    Please know that although I do not know you personally, I know your struggle and I lift your family in prayer as you walk, literally, with your beautiful daughter.

    ReplyDelete
  5. Thanks to all of you for your wonderful comments. It is nice to know there are people that care. Debby, I am sorry about your husband. Have you ever visited the cholangiocarcinoma.org website? We have met a lot of people through that site. Unfortunately, many have passed away this past year. Far too many. Anonymous, I would like to know your sister's story. If either of you would like to tell me your stories, I would be interested. My e-mail is pamkunklier@yahoo.com. Thanks Lori and Teresa for your neverending support. I sure do appreciate it.

    Love, -Pam

    ReplyDelete
  6. Hi Your story has really touched my heart being that I know somewhat what your going through In dec 2011 My husband was diagnosed with the same thing He is only 26 . For a married couple this age this has really took a toll on us We have two Kids and Our life has really changed. We have been positive throughout This whole process and Patience has been everything. The doctors also gave him 6-12 months to Live and said he was already stage 4 and Since he has it in his lungs and liver chemo was the only Option. He is doing Good he didnt get treated today because his counts were to Low..But we are living on a prayer. I really Hope your daughter and my husband recieve Gods miracle !!! God bless you

    ReplyDelete
    Replies
    1. Thanks Priscilla. I sent you an e-mail.

      Delete
  7. ok to which email :) ??

    ReplyDelete
  8. Maybe you didn't get it. Send me your e-mail address and I will re-send it. I sent it awhile ago. My yahoo mail tells me when someone comments on this blog. I assumed when your name is listed on the comment that you had put your e-mail so that your comment has a name and every time I have done that for someone else's blog it is my e-mail address. So I figured my e-mail would go back to you. Maybe it doesn't. I am not sure now.If you type a comment under anonymous, then you don't have to put an email address and it comes up anonymous.I am probably writing back to people and they are never getting the message!! My email is pamkunklier@yahoo.com I hope this isn't too confusing. I re-read it and really don't understand myself!! Haha.

    ReplyDelete