Chemo Is On

Just a little note to let you know that Lauren got a call from U of M. Mercy had faxed Lauren's labs to them and her platelets were in the 160,000's. She needs for them to be over 100,000 for chemo so yay for that. We were in the middle of WalMart yesterday when they called. They have dropped since she last had chemo. They were in the 190,000's three weeks ago. Lauren and I will be leaving tomorrow morning around 8. She has labs at 12:15, doctor at 1:15, and chemo at 2:30. We will stay overnight with Sis and Bruce tomorrow night. Last time we drove there and home all in the same day and it is just too hard. So we will stay overnight and drive home Thursday morning. I had to call in Lauren's prescription today for her Xeloda, which is her oral chemo med. Before I called it in, I called the company that manufactures or distributes this medication. I'm not 100% sure which it does but anyways, it is called Genentech. They offer a co-pay card that helps with the out of pocket expense of the drug. This drug would cost at least $3000 for each chemo treatment if Lauren didn't have insurance. She has to pay $50 for each supply,but with this card, she will only have to pay $10. Every little bit helps because she only gets a small amount of money from disability and most of that goes to pay for her COBRA insurance premiums. We thank the Lord every day that she at least has insurance. I don't know what other people do. I will look through my file of photos and post one, since I find a post with no picture not too much fun. I will let you know how everything went when we get home. Love, -Pam

This is a real blast from the past. Kristen, Lauren, and Ryan at Homecoming festivities at University of Toledo. I think this was 2004. Little Bub was so tiny. Now he is about 6'1!! Sis would've been around 22, Wo was 18, and Ryan was 13.

Trying To Live A Normal Life

I am sitting here on a Sunday night watching the Olympics. Wow!! What a great night. Swimming and gymnastics!! So exciting. As you can tell, I love the Olympics. I think I got that from my Mom and Dad. Ever since I was a little kid, I can remember watching every Olympics. I am always sad every time they are over.

Enough about me, this blog is about Lauren. She has still been working with Gio on his house. It is coming together nicely and looks great. They have both worked so hard. Lauren hung the black and white curtains she made in the family room. They look really nice. Mark helped Gio put a kitchen light up today. I came back home and made steaks on the grill, potato casserole and broccoli for dinner. Gio and Wo came back to our house to eat and watch tv.

We went to lunch on Tuesday with our dear friend, Lisa. We always have so much fun with her and this time was no exception. We went to the Panera in Fairlawn this time istead of our regular place which is Rocknes. Lauren loves the broccoli cheese soup at Panera. Lisa and I had salads. We were sitting in a booth eating our lunch and someone says hi to me from over the wall at the booth. It was my friend, Brenda from high school. I don't think I have seen her for over 20 years. She looked great and is still as friendly as ever. It turned out that Lisa knew some people that Brenda was friends with. Small world. Her is a picture of the Cholangiocarcinoma Cuties at lunch.

Wednesday was a sad day for us. Lauren, Gio, and I went to Sharon's calling hours in Mogadore. There were so many people there and we paid our respects to Sharon's husband, Todd, Sharon's daughter and son-in-law, Katie and Clifford, and Todd's sister, Michelle. It was so nice to see them and offer them comfort, but so hard and sad at the same time. What a lovely tribute to dear Sharon. We sure will miss her and hoped she could've come to more lunches with us, but we know she will be there in spirit. She is now at peace in Heaven. Her is a picture of the last time we saw her. We had so much fun with her and Lisa. I remember at one time, they both had their shirts half up showing us their scars!!

Lauren finished up her 2 weeks of Xeloda on Wed. This is the chemo pill she takes now instead of the 5-FU in the pump she used to get. She didn't have much problem with it. I think it made her tired. She has laid around a lot these past few weeks and watched tv. Her back has really been hurting lately and none of her painkillers are really helping, so we will have to talk to the doctor about that. She is not in the mood to be bothered and has been a little testy at times with Mark, Gio, and me. You can't blame the poor kid, but it sure does hurt our feelings. Not Gio's though. He must have tough skin because he just laughs it off and can usually get her in a good mood. I usually just leave her alone. She usually says, if I need anything I will let you know and if I don't feel good I will tell you. I'm sure I would be a bear to live with if I were going through what she has to deal with. I just wish this was a bad dream and I would wake up.

Lauren and I will be heading to Michigan on Wed. She has labs, doctor visit, and chemo. She also has to go to Mercy in Canton tomorrow to get labs to make sure her platelets are high enough. Like Cisplatin that she was on in the past, Oxaliplatin can make platelets take a nose dive. Not as likely as with Cisplatin, but a possibility. If platelets go below 100,000, she won't be able to get chemo. Pray they are high.

Thanks for all of your prayers and well wishes. Bruce and Jan - Thanks so much for the corn. It was delicious. I will close with two pictures that I find so sweet. Sisters as beautiful today ( taken a few years ago) as they were way back when. Take care everyone.  Love, -Pam

Keeping Our Traditions

We've been fairly busy since I last wrote. Lauren is like Suzy Homemaker, whipping up curtains for Gio's house. She had bought all this fabric to make curtains over the last few months. The other day she went in the basement and came up with the sewing machine that rarely, if ever gets used. She sat down and started sewing. I asked if she had taken measurements. She said she didn't need to, it was all in here, pointing at her head. I told her she was crazy and walked away. She has been pinning and sewing all week. Lauren and Giovanni both have the same taste in decorating. Very modern with lots of black and white and a little pop of color here and there. So totally opposite from my taste, but to each his own. Here she is with curtains for the family room and kitchen.

They have been working on the house a lot this week. All the rooms are finished except for the kitchen and they will deal with the bathroom later. The furniture is all up in the master bedroom and Lauren has taken some nice naps while Gio works. It is all coming together nicely. The next big task will be putting the floor in the living room, kitchen, dining room, and family room. They both have been working so hard to make a nice home.

I got Lauren to go swimming one day last week. She was afraid it might hurt to get in the water with her neuropathy from the chemo, but it was warm enough that she was ok. She didn't feel that well after being in the pool though. I think she got too much sun. She seems to feel a lot better these last few days. She has a lot more energy and is getting out more. She went to bowling with Gio on Thursday, out to dinner with him Friday and to the mall, and shopping and working on the house all day Saturday and most of Sunday.

On Sunday morning, like we have done for a few years, we got up at 4:45 am and went to balloon races in North Canton. They have a 3 day festival every year with lots of hot air balloons, fireworks, carnival food, etc. I believe it is the start of the Pro Football Hall of Fame festivities. Anyway, we get breakfast from McDonald's drive thru and take it to a field in North Canton. We set up chairs and watch balloons take off in the field and other balloons come from other starting points and throw these balls with a streamer to try and hit a large target in the field. Some come in just right and can get almost to the ground and hit the target. Mark is huge on tradition and making family memories, so we do this kind of thing a lot. Like fireworks, going to the fair, cutting our own Christmas tree,...I am glad he is persistent about this stuff because I would probably just try to skip them and sleep. Haha. Ryan didn't go this year because he had to work. Mark, Lauren, Gio, and myself went and had a nice time. Here are a few cool shots of the balloons and Lauren, Gio, and Mark.

Last time I wrote, I told you about the prescription my doctor put me on to help me out with things. Well, some of the side effects went away, but the one that was bothering me the most did not. I would get a real strong heart beat in my throat and neck. It would make me feel like I couldn't breathe and I would have to try and calm myself down. It felt like I was calm on the outside, but totally freaking out on the inside if that makes sense. I cut my dose by half and then to a fourth of a pill and it still did this. I did not take a pill Sun. or today and my heart feels normal. No more of that!! I called the doctor's office today and asked to speak to a nurse. A nurse in the crankiest, bitchiest voice answered and said Can I help you? I said Yes, is this Dr. Steineck's nurse and she said in the same rude tone, but even worse and very impatiently, Can I help you? She didn't say yes it is or identify herself. Before I could even think, she set me off and I said, Not when you talk to me like that. Can I please speak to someone else? She kind of laughed and hrumphed all at the same time and said hold on. I was boiling. Then, the sweetest nurse got on the phone and helped me. She wrote down my side effects and will relay them to my doctor so that he can prescribe something different. I will let him know how rude the other nurse was. I could not believe someone like that works in his office. He just moved to this office from one in North Canton and the nurses there were all the sweetest, most wonderful ladies. I sure wish he would've taken them with him.

Lauren and I had breakfast at The Frontier restaurant in Hartville today with Dawn, Debbie, Jill, and Debbie. Dawn brought us our purses we had ordered from her daughter's purse party we went to a few weeks ago. We had a lot of fun talking about the old days working together and the funny things that happened. I just love all of them.

On a sad note, both of our dear friends that I have asked you to pray for have passed away. Kim passed away on Thursday, leaving behind two teenage daughters. Sharon passed away yesterday morning. She leaves a husband, daughter and son-in-law, and two grandchildren, one that was born only a few weeks ago. Lauren is having a hard time with this. Kim had the same cancer as Lauren and Sharon had gall bladder cancer. We will be going to Sharon's calling hours, but Kim lived in New Jersey, so we won't be able to go to hers. These ladies were both so sweet, caring, and wonderful, each in their own ways. Please say a prayer for their families. We will miss them both.


Love, -Pam

Not Much Going On

It has been kind of quiet since I last posted. Lauren is trying to adjust to her new chemo. She has had a lot of neuropathy due to the Oxaliplatin, but it is getting better. She can now drink cold drinks again and her hands aren't bothering her as much. I keep trying to see if she wants to go swimming, but she is afraid the water might be too cold and zap her. With all this hot weather, I think the water would be warm enough. She has really been tired from this new chemo. She tries to get out and about, but tires very easily.

Lauren did manage to go to one of her favorite places this past weekend. The Italian Festival in downtown Akron. They block the downtown off for a few blocks and have all sorts of vendors. They also have entertainment in an amphitheater and fireworks to Italian music. We all went on Saturday night. Gio's family belongs to a club called The Carovillese Club. They have a booth every year at the festival where they sell sausage sandwiches. They are delicious. Gio's Grandma belongs to the Sicilians Ladies Club and they sell all sorts of homemade cookies. We had some of those too. We also had strombolis, frenchfries, pizza, and elephant ears. We didn't all eat all of this. Some had one thing, some had another. The fireworks were awesome as usual. Sorry I don't have any pictures from the festival. I didn't feel like lugging my camera around.

Lauren and Gio have been working on his house. I went over one day with Lauren to help her work on stuff. It is tarting to look really nice. So much better than when they first started out.

I have been having a hard time with things, so I went to the doctor on Friday. If you don't have a doctor you like and live near us, you might want to consider our family doctor. His name is Brady Steineck and he is with Community Health Care in Louisville. He is the most compassionate, caring doctor I have ever had. We all love him so much. He is fairly young, but very good. He takes his time and really listens to you and tries his best to help. Anyway, he prescribed Zoloft for me. The first day I took it I felt way too drugged up, nauseous, and had a headache. The next day I took half a pill and still had side effects, just not as bad. Each day the side effects are lessening, but still there. Everyone says it takes a week or two to feel the good effects, so I will give it a try. I am not sure if I will go to the full dose or stay at half. I feel kind of weird writing this here, but I want to be honest and let everyone know what it is like to walk in our shoes, good, bad, and ugly.

I would like to say Happy 77th Birthday today to my dear Mom, Tommie Bachman. She is such a great person and gives us all so much support. We love you, Mom!!

Please say some prayers for our dear friends, Kim and Sharon. They are not doing well and could use some extra prayers. There are so many others that need your prayers too. There are just too many to mention by name. So, maybe when you pray you could ask God to help all people suffering from Cholangiocarcinoma. It is such a brutal cancer and we are losing so many friends.

 I am now going to look through my pictures and find a nice one to post. Thanks again for all of your support. We will all continue the fight.

Love, -Pam

Kind of blurry because it is a picture of a picture. This is Lauren being held by her big sister, Kristen, on the day she came home from the hospital after just being born.

Our Weekend at Grandma and Grandpa's and First New Chemo

Well, I am finally back. Sorry that I left you all hanging. I had to find my strength and I think I got it back. You have all been so wonderful to us and I need to keep posting to keep you informed. So here goes.

Lauren wanted everyone to get together at my Mom and Dad's house for the weekend last week. They used to live in Wadsworth, Ohio, which was about half an hour away from our house. They had a condo up on Lake Erie. They decided to buy a house up there and found a gorgeous, huge home with a ton of land up in Oak Harbor. They have a big pond as do most that live on their road. Here is a picture of the "mansion" as I call it.


Lauren, Gio, Ryan, Stephanie, my sister and brother-in-law, Linda and Wayne, and my nephew, Michael, along with Mark and I went up there Friday. Kristen came from Michigan in the afternoon and left that evening. Bruce had to work. My other nephew, Matt, and his fiancee, Katie came after work on Saturday afternoon. We also had to bring our three dogs, Peanut, Penny, and Frank. Peanut and Penny are no trouble, but Frank is a huge, drooling, hairy Husky-Rottweiler mix that is a pain in the butt. He is 11 and still as hyper as he was as a puppy. Last time we took him up there we put him in the dog kennel at the house and he barked all night and kept everyone awake. This time, Mark and I went to sleep at my Mom and Dad's condo, which is only a few miles away, and he acted up all night in the house, keeping everyone awake. Grrrr. He does like the pond though. Oh, and I forgot to mention that it was over 100 degrees outside when we were there, so even the pond felt like a hot tub! Here are a few randoms of the pond and grounds.

Frank heading for the water. Wayne is in the shallow end on the left and I think Linda is with the noodle. The river is in the background. So pretty.



Linda is on the dock. Michael is in the water I think that is Ryan on the float.



Lauren does not like to swim in lakes or ponds. She only likes pools. Everyone finally coaxed her in on a raft. She even had her little buddy, Penny with her. She was kind of ok until a frog poked his head out of the water in the middle of the pond. Then she hightailed it out of there so fast and would not get back in. She is afraid of frogs, snakes, fish, butterflies, birds, dragonflies.....she has been this way since she was a tiny kid.





The picture above is of Lauren and her best pal, Penny before seeing the frog. Lauren did get to go to the condo and swim in the pool that evening. After swimming and playing outside all day, we had a big picnic indoors because it was so hot outside. We had hamburgers, hot dogs, macaroni and potato salad, and fruit salad. Yum!

 

 

Here is a picture of Sis and Wo.

 

 



 

 

And not to leave Ryan out, he can comb through his hair and make it super puffy. It is so thick and it was really humid that day. Haha.

 

 

 



The next morning I heard all about how bad Frank was the night before. Michael was about ready to strangle him and he is a huge dog lover. I guess when Frank barked and cried that made the little dogs bark too!! I said I would sleep on a blow up mattress in the kitchen with the dogs so they would be quiet. My Dad, Mark, and all the kids went out on the boat. Linda, my Mom, and myself stayed home to watch the dogs and swim in the pond. We had a nice quiet time. That night we had a fish fry. My Dad was excited to try out his double deep fryer he won in the silent auction at Lauren's benefit back in Feb. We had perch, homemade fries, coleslaw, and brownies for dinner. I don't really like fish, but it was good. Everyone that likes fish, really like it. My Dad used peanut oil and it was very light. Not greasy at all. Matt and Katie got there before dinner. It was nice to see them. Everyone got a little crazy that night, drinking and lighting off a few fireworks and sparklers. Everyone except Lauren and I. She's not allowed to drink and I don't really like it. I had a few margaritas the day before. Oh, and Steph doesn't drink because she is too young. When we went to bed, Frank started up again. So I told Lauren to give me one of her Ativans. I gave Frank the Ativan and he slept like a baby the whole night. You might think that is mean, but you weren't there and he is perfectly fine. I think he probably  liked being calm.

We had a huge breakfast on Sunday. Egg casseroles, two different kinds, and cinnamon rolls. My poor Mom really works so hard when we are all together. We try and help, but it seems like she never stops. Same with my Dad. He is 80 and still go, go, go!! Mark and I left for home shortly after breakfast, and the kids stayed to go shopping in Port Clinton. We took all the dogs home with us. The kids got home that evening. What a fun time!!

Now, on to Lauren's chemo. We left Wed. morning at around 7 am. Lauren had labs at 11:15. She saw the doctor at 12:15. They said the MRI was still interpreted as Lauren having a new tumor. But, it is still not for sure. That is what it looks like. So, hopefully, this new chemo will kick its butt. Dr. Z told Lauren all about the two chemos. Oxaliplatin, which is the chemo she gets through infusion, can cause neuropathy, which is tingling in hands and feet. You cannot eat or touch anything cold. It is extremely painful if you do. Lauren has to drink all of her liquids at room temp. or it will feel like she is choking and like she is swallowing shards of glass. Her voice sounded weird after she got her chemo, so it must affect vocal chords too. She sounds better today. Hot stuff doesn't affect her at all. She said she washed her hands and forgot she was to use warm water. She said the cold felt like when you put your tongue on a battery. Kind of shocking and painful. I don't think it lasts the whole time. Just a few days. Her doctor said he is giving her an aggressive dose of Oxaliplatin because Lauren has handled her chemo very well in the past. She will also take a pill called Xeloda. It is pronounced Zeloda. This can cause red, peeling hands and feet and mouth sores. It is the pill form of 5FU, which she was previously on and had no problems. We will only have to go back every three weeks instead of every two weeks which is good. So, she gets chemo, takes the Xeloda for 14 days, 3 in the morning after breakfast, and 4 in the evening after dinner. Then she has a week off. Dr. Z said if she was on 5FU instead of Xeloda, she would have to be treated every two weeks. So this is better!! We are still so pleased with Lauren's doctors and her treatment at U of M. They are doing everything humanly possible to help her and we are so grateful. After chemo, we went to Denny's for dinner. Kristen and Bruce met us there and ate with us. Then, the long ride home. We didn't get home until 11. Lauren feels pretty good today.

I will post a few more pics of our time at my Mom and Dad's. Thanks again for all of your support. I will try and write more often to keep you updated. Love and hugs to all,   -Pam

Ryan and Stephanie on the dock.

Lauren, Penny, and Grandma Tommie on the beach.

Linda and Ryan on the dock.

Frank after cooling off.

Frank, Michael, and Wayne.

My chunky munk, Peanut, resting in the shade.

Frank, Grandma Tommie, Lauren, Linda, and Gio.

Grandma and Gio.

Grandpa and Mark.



Going Back To Michigan On Wednesday

Sorry I haven't written anything in a long time. I have been having a terrible time dealing with everything. Lauren's Oncologist, Dr. Zalupski, called last Thursday and said that the MRI had been interpreted that Lauren did have a new tumor. He didn't tell me much more other than he wanted to start her on a new chemo this week. A nurse called Friday when we were at my Mom and Dad's in Oak Harbor. Of course Lauren's phone was dead and she didn't hear the message until Saturday. She called her back today and she has to go for chemo on Wed. She will be starting Oxaliplatin and will also take pills called Xeloda. The Oxaliplatin can have some weird side effects. She could get neuropathy which means your hands and feet can burn, go numb, or hurt really bad if they touch anything cold. She will not be able to eat or drink anything cold or it will feel like her throat is closing. The Xeloda is a pill form of the 5-FU she was on before. She will only have to go for chemo once every three weeks and take the pills for two weeks. I want to get a copy of the MRI report to see what it says exactly. I don't think they are positive the new tumor is in fact a tumor for sure. I asked the doctor a million questions, but felt I didn't get the specific answers I was looking for. He still needed to talk to a few of Lauren's other doctors to see what they thought. After thinking about it, Lauren and the rest of us are happy she will be on a different chemo. She has been on the other ones for ten months, which is a really long time. I think at first, Dr. Z didn't give her much more than six months to live, but she is still doing really well and we hope she will be around for a long time. She is very tough and strong. I will let you know about our trip to visit my parents in the next couple of days along with pictures. Right now I am just too tired. Thanks for continuing your prayers.

Love, -Pam