Bad Reaction To Chemo

Hi Everyone!  Happy Halloween!! Sorry it has been awhile since I last posted, but I have to psyche myself up to write. It takes a lot of time and thought and I haven't felt like thinking!! Lauren had a very trying time at chemo last Wednesday. I will try and remember as best as I can.

We left for Michigan early last Wed. morning. Hit a traffic jam near Arlington Rd. and it took an hour to go 14 miles. Good thing we give ourselves plenty of time. We got to Michigan about 15 minutes before we were due.

Lauren had a blood draw and then an appointment with Dr. Zalupski. Her platelets were only 63,000 and need to be 100,000 or more for chemo, but Dr. Z said he would just lower the amount of Oxaliplatin she got instead. He said he wanted her to have this chemo, one in November, and then a CT scan at the beginning of Dec. Dr. Z's PA, Marlene also saw Lauren. Lauren asked her about her nausea she gets from Xeloda, her oral chemo. Marlene said to take Compazine 15 minutes before she takes Xeloda. Lauren was taking Compazine when she got nauseous instead of before. I am happy to say that so far this is working much better for her.

Lauren got into a nice area for chemo back in a corner. She was happy she wasn't in the big, semicircle room that has no privacy. My Mom and Dad came to the hospital to visit . I don't have any pictures because I forgot my camera this time. Lauren got a flu shot before chemo and had all her pre-chemo meds. Then she had her bag of magnesium and bag of calcium. She gets some hydration as well through iv. My Mom was back with her at this time. All the sudden, my Mom came out and said Lauren wants you back there. She is really itchy. I was a little concerned and went back. Nurses were all running around like mad. Lauren said she was really itchy, her face was beet red, and her ears felt like they were closing. She said her throat felt ok and didn't feel like it was closing. They had a pulse oximeter on her finger and a blood pressure cuff on her arm. The PA came back to get control of things and had her nurses give her Benedryl  three times, steroids a few times, hydrocortisone a few times, and Pepcid all in her iv. She then developed hives all over her chest. Her ears and scalp were also really red. She had gotten up and went to the bathroom when this first started and scratched her stomach so hard that there were blood marks under her skin. My poor Mom didn't know anything was wrong until Lauren told her nurse she didn't feel well. Lauren was so scared and they finally got her under control after about an hour. She had only had a small amount of Oxaliplatin and it caused this reaction. Her doctor had told her before that each chemo would get worse and some people had a reaction about the 6th or 7th time. He sure was right.

Lauren felt good as new after a few hours and was allowed to leave the hospital. I was and still am concerned what will happen without her getting chemo. She still is taking the Xeloda, but what is the doctor going to do? She has to be on something to keep her tumors from growing. I am sure Dr. Z will have something in mind. I think we will call him this week or next to see what he has come up with.

We went to Applebee's for dinner and Lauren felt great not having chemo. She usually wants to go right to Sis's and go to bed. She had a lot of fun. We all went back to Sis's house and watched tv. Sis and Bruce and their dogs weren't home. Their dogs were in a kennel and they were on vacation in Mexico. We got up and went to Bob Evans for breakfast and headed home.

Lauren decided to wait until Friday to start her Xeloda. She felt so good on Thurday and then back to feeling cruddy. She has been very achy and sore this time on Xeloda. She has also been so tired. I hope she can feel better soon.

She went out with Mark today and went with me on Monday to get my flu shot at Mark' work. She did go with me to the grocery store on Sunday as well. Other than that, she has been resting.

Here is a cute picture of Wo when she was a little girl. She was so adorable.

Today is our oldest daughter, Kristen Marie's 30th birthday. She is such a beautiful, kind, funny, compassionate person. We are so proud of her and all of her accomplishments. She never gave us a bit of trouble her whole life. We have been very lucky in that we have three great kids. All different and all special in their own ways. Her is a pic of Kristen or Sis as we call her and her dear husband, Bruce.

Thank you for continuing to read my blog. Please keep all of our CC friends in your prayers as well as Lauren and our friends with other cancers. Also our friends that have been affected by Hurricane Sandy. Love to all of you, -Pam

Lunch, Lunch, and More Lunch

Hi Everyone, We have been so busy this past week. I know I wrote last time about going to lunch with our friend, Lisa on Monday. Well, it didn't stop there. All I know is Lauren and I could have full time jobs going to lunch!!

Gio did not feel well from the beginning of the week, so Lauren told him just to stay home until he felt better. The last thing she needs right now is to get sick. I am happy to report that by Friday he was feeling much better.

Mark had his day off on Wednesday and he and Lauren went to Sam's Club and to lunch at Rockne's. Lauren brought home almost her whole lunch because she hasn't had much of an appetite lately and has been getting nauseous a lot too. When she first got up on Wed., which was the last day for her to take her Xeloda for this 2 week period, her feet were so red and she felt bad. She tried to eat some scrambled eggs and toast for breakfast and threw up. I e-mailed Dr. Zalupski and said she was not going to take her last dose of Xeloda because it seemed like she couldn't handle it. He e-mailed me back and said that was fine and we probably should have stopped it sooner. Since then, her feet have gotten better, but she has still been nauseous.

I had to go grocery shopping on Thurs., so I asked Lauren if she wanted to come with me. Ryan came home from his class and we aske him to join us. I took them to lunch at Olive Garden because they have a really good soup and salad lunch that is really inexpensive. It was nice to get to do something with Ryan because he is usually working, going to school, or with friends or Stephanie. Here are a few pics of us at lunch.

Ryan really chowed down and ate a ton. I ate a regular amount. Lauren could barely eat anything. She thinks she is hungry, but fills up so fast. I really worry about her. After lunch we went shopping at Aldi. When I went to pay with my debit card, I realized I left it at Olive Garden. I remained calm and Lauren had cash to cover the bill. I later repaid her at home. We went back to Olive Garden and sure enough, they had my card. The reason I am telling you this is that before I was on medication for depression and anxiety I would have totally gone bonkers about losing my card. I calmly took it in stride and everything was fine. How wonderful it is to be calm. We then went to Walmart to get Halloween candy. Lauren is going to take a bucketful to Dr. Zalupski and his nurses. She did this last year and they still talk about it!! It was a really fun day.

Lauren and I went to Mark's store in Kent on Friday. My Mom and Dad came down from Port Clinton to get new tires for their car and my Dad had his 62nd high school class reunion that night in Wadsworth. Guess what else they wanted to do? Yep, go to lunch. We sat at Mark's store for a long time, visited, and waited for the car to be done. We all went to Mike's Place in Kent for lunch. we were happy Mark could come too. He rarely if ever leaves his store. We got to see one of Mark's bosses, Bruce as we were leaving for lunch. He is the one we call Sugar Daddy because he always does nice things for Lauren and even let her use his T-Bird for a weekend. We didn't eat lunch until mid afternoon. I hope my Mom and Dad could eat their dinner at the reunion. They eat such small amounts anymore. They split a plate of sliders and were stuffed. Here is a pic from  lunch.

Well, guess what we did on Saturday? I am not even kidding. This one had been in the plans for quite some time. Our friend, Kris from neat Philly, Pa. was visiting a friend near the Youngstown border. I met her through the Cholangiocarcinoma.org website and Lauren, Lisa, and I are friends with her on Facebook. She has the same cancer as Lauren and Lisa have. We met for lunch at a Cracker Barrel in Rootstown. We had the best time together. Kris came with her friend, Lorraine and they met a lady that I think was Lorraine's aunt. Lorraine and her Aunt sat at the table right next to us so they could visit . They were both very sweet as well. Here are some pics.

Lauren was so exhausted after this week of lunching. She fell asleep early Sat. night, slept all day Sunday and didn't feel good on Sunday. She felt very nauseous after breakfast and barely ate anything but some of my chicken rice soup that I had made and froze. She was in her bed all day and went to bed early. Gio had to go to bocce by himself and came back in the evening. We were supposed to meet our breakfast gang this morning and Lauren said last night. Mom, I can't do one more thing. I am so exhausted that I need to stay home and rest. I texted my friend, Dawn last night and told her we weren't coming. They all understand and we will try to make it next time. It is already time to go back to Michigan on Wed. Please keep our CC friends and Lauren in your prayers. So many are not doing well at this time. Thank you for reading this blog and I will talk to you next week.  Love, -Pam

Everyday Life

Hi Everyone! This post might be shorter than usual because I really don't have much news. Once I get writing, I think of things so we will see. It is crazy to me the people that read this blog. One person all the way in Estonia reads it. I had to google Estonia to see where it was!!Way on the other side of the world. Technology is amazing. Hey, if it gets the word out about Cholangiocarcinoma, which is one of the reasons I write this blog, I am all for it.

Lauren has been feeling amazingly well lately. She just started having a bit of foot pain on Sunday. The soles of her feet are red and sore from her Xeloda. I rubbed some cream on them last night before she went to bed. Hopefully this morning they will feel better. She has had more than a few bouts of nausea, but just sits real still and chews spearmint gum and it usually passes. Her mood has been better too since speaking with the social worker when we were in Michigan.

Wo has been on a shopping kick lately. She went one day with her good friend, Jill and one day with her brother, Ryan. Now before you get all judgmental and wonder how she can afford to shop, let me tell you that she only buys things from discount stores and on sale. She mostly window shops and just looks. She goes with others that need things and she helps them find them. She could be gone for four or five hours and come home with one tiny bag. She loves to get out and stay busy when she feels good. She is a girl that used to live to shop. She used to buy a purse and shoes every time she went. Sadly, she cannot afford to do that anymore. But she still has fun with friends and her brother who also seems to have the shopping gene. Must've gotten that from their Dad, because I would rather go to the dentist than go shopping. It's all those years of working in retail that ruined it for me.

Last Wednesday, Lauren and Mark went on a Daddy/Daughter date to the movies and saw Hotel Transylvania. They both said they had a great time and the movie was really cute. Mark absolutely loves spending one on one time with his kids and has always been such a great Dad.

I went on a crazy soup kick last weekend and made three different kinds of homemade soup. Chicken with rice, broccoli cheese, and vegetable beef. I froze a lot so we can have them later when we are too busy or I just don't feel like cooking!!

Mark and I cut down all the flowers and trimmed the bushes this past weekend. My flowers were nothing this past year compared to previous years because I just didn't feel like taking care of them. They didn't matter to me this year. That is what depression does to a person, I guess. I feel a lot better now and hopefully next year my flowers will be beautiful and mean something to me again.

We met one of our favorite people, Miss Lisa, yesterday for lunch at D'Agnese's in Fairlawn. It is a great Italian restaurant that has delicious food. Lisa brings such joy to us every time we see her. She relates to what Lauren is going through and is such a wonderful person. We always have such a fun time when we are together.

We will be heading back to Michigan next Wednesday. Wow. three weeks sure do fly by. Please remember to say a prayer for all of our friends with Cholangiocarcinoma. Some are not doing very well lately. Also, please pray for Marta who is having a difficult time battling stomach cancer. May they all find some comfort.

I am posting some pictures of Lisa, Lauren, and I at lunch this week. Also, a blast from the past. Judging by how little Ryan is, I would guess this pic to be about 16 years old. Haha. I'm sure my kids will love this. How about my groovy striped pant suit. Mark looks quite handsome! One more thing, Our Cleveland Browns finally won a game!! Go Browns! Take care. Love, -Pam

Chemo, Crankiness, and Finding A Nice Place

Hi EveryoneI I was being a bit of a procrastinator this past week and decided I better get cracking and write a new post. Thanks to all of you for sticking with us and caring about Lauren!

We left for Michigan on Wed. morning last week. Lauren had labs at 1:45, doctor visit at 2:45, and chemo at 4. Lauren had her favorite girl for labs, then we headed upstairs for the wait to see Dr. Z. We didn't have to wait too long in the waiting room and were called back to a room after Lauren had her vitals taken. That's where they get you. You think you are going to see him quickly, but you are left to wait and wait....and wait. No, really it wasn't that bad, and he is so busy. You see him charging up and down the hallway usually with a nurse or PA following quickly behind. He came in with his nurse, Julie this time. He seemed a little rushed, but the time we had with him was good. He made fun of Lauren because she always brings a big wheelie tote and a huge purse, both packed with anything you could want to make chemo more enjoyable. Lauren told him she felt much better since he lowered her Xeloda pills from 7 a day to 6. No red, peeling, sore feet this time. Dr.Z told us she would have scans after four chemos instead of three, since she was feeling so good and doesn't have any liver pain.

Lauren remembered that she wanted to ask Dr. Z something else after he had left. In case you are wondering, I asked Lauren prior to writing this if it was alright to talk about it. She gave me the ok. Julie came back in the room to give us a prescription and Lauren told her that she had forgotten to ask Dr. Z about some anger issues she has been having. Julie said she would go get Dr. Z. He sat and listened to Lauren and talked with her for over 15 minutes. I won't go into specifics, but Dr. Z made Lauren feel better and then called a social worker that works at the Cancer Center to come and talk to Lauren. Wo said she felt so much better after speaking to her and she seems much happier now. They suggested Lauren see a therapist at home once in a while to help her deal with things and they might try some antidepressants to see if they would help.

We didn't get out of chemo until 9pm. Sis and Bruce were the late people all week and got off work around then too. They had already eaten at the hospital, so we got Panera to go. Lauren ate soup and a little bit of sandwich and went straight to bed. We left for home on Thurs. in the early afternoon.

I called our family doctor, Dr. Steineck on Friday and asked the nurse if Dr. Steineck could refer us to a therapist. Dr. Steineck called Lauren and said he didn't really refer people to anyone, but he would be happy to talk with Lauren any time she needed and would help her any way he could. Lauren loves Dr. Steineck and will probably take him up on his offer. I will look for therapists in the area. I told Lauren, if she goes to one and doesn't like them, we can always go to someone else. The social worker at U of M said she would be willing to do phone consultations as well.

We went to Gio's house Sat. night and made homemade pizzas. I make the crust and Lauren puts the toppings, sauce, and cheese on. They were delicious! We watched the Ohio state game. Wow!! What a high scoring game. I think I was the only one awake at the end of the game. Mark was sleeping in the guest bedroom. Wo and Gio were sleeping on the couch. They had gone shopping all day and they were really tired.

Our friend, Lisa had told us about a place in Fairlawn, called Stewart's Caring Place. It is a place for cancer patients to go for all types of services free of charge. I made an appointment for Lauren to get a massage and to go on a tour. Lauren had a 30 minute massage and I sat in the beautiful massage waiting area. I started a conversation with a man that was waiting for a massage and I guess we were talking too loud because we got shushed by one of the masseuses. Woops!! The volunteers there are so nice. It is a beautiful place all paid for by donations. They offer support groups, lectures, yoga, art therapy, free wigs, massages, etc. What a wonderful place.

Later last night, Lauren was in so much pain from the massage she was crying. I had to rub icy hot all over her back and that helped. She has never had a professional massage before and the masseuse probably really worked her muscles and made them sore. Is this normal? If you have ever had a massage, let me know. I've never had one, except from Mark. I find strange people touching me too creepy.

Well, that is about it. Lauren was a little cranky at chemo and didn't want her picture taken. An elderly man was next to her and he slept and snored really loud the whole time we were there. If you know Lauren, if anyone even lets out a little snort when they are sleeping she goes bonkers. She cannot stand the sound at all. So she sat there most of the time with her finger in her ear, looking really annoyed. I chose a pic to post of Lauren when she was 18. I don't think she looks that much different. She was just as cute back then. Please continue to pray for Lauren and her CC buddies. Thanks and God bless. Love, -Pam

Our Fun Weekend

We had a quiet, uneventful week, but made up for it and had a great weekend. I love it when Lauren has things to look forward to. She seems to come alive and act like her old self. We were talking the other day and she and I really think chemo has changed her personality. Lauren used to be so happy and fun-loving. Now she is way more serious and it takes a lot to make her laugh. But, when you have advanced cancer, that'll do it to you.

Wo was done with her two weeks of oral chemo on Wed. She did better this time since Dr. Z lowered her dosage from 3500 mg. (3 pills morning and 4 pills evening) to 3000 mg. (3 pills morning and 3 pills evening). Her feet did not turn red on the bottom and hurt at all this time. It could have also been from the iv's of calcium and magnesium that she had when she had her Oxaliplatin infusion. Whatever it was, it worked. Lauren has suffered from some bouts of nausea this time. She always chews a piece of mint gum when she feels sick and it usually settles her stomach. She got up late one day and hadn't eaten in a long time. The gum didn't help that day and she did get sick. Nausea and vomiting are a very common complaint with this disease. Luckily, Lauren doesn't experience it all the time. I hope and pray it stays that way.

Lauren was really excited for the weekend. My Mom had her high school class reunion from Barberton on Friday night. She and my Dad stayed overnight with their friends, Danny and Ann in Wadsworth and came to our house Sat. afternoon. We all left to go to Green High School stadium late afternoon. Our friend, Michelle asked if Lauren would want to participate in Kick For The Cure. It was a fundraiser for cancer and they were honoring cancer survivors at the event. It was with all the soccer teams in Green and started by a coach that lost his wife to cancer. Michelle is the sister-in-law of our friend, Sharon who passed away a few months ago from the same cancer Lauren has. Lauren was so touched that Michelle thought to include her and and felt very honored. Michelle ordered Lauren a t-shirt and her two girls had fun pizzazzing it up by fringing the bottom. They were both so adorable. Lauren was escorted on the field by the two girls, Sarah and Lauren, and a member of the varsity soccer team. They announced each survivor and their escorts over the PA system. It was very nice. Then they continued with varsity games. We stayed for a little bit and left to go to dinner. I took some pictures at the event and here they are.

Lauren and Lauren

Lauren and Sarah

Lauren, Gio, and Mark

Lauren and her escorts on the field.

Wo with her Grandma Tommie and Papa Ron

 

Wo and Momma

 

Lauren and Michelle

Thanks, Michelle for the great time!! After the Kick For The Cure, we went to El Rincon. I know last time I said Lauren would not eat there again because she lost her taste for mexican food. Well, she made a liar out of me. She found her taste for the place again. Gio and I are especially happy!! My Mom ordered something different for once and it was the hugest thing ever. My Mom is a tiny, little lady and she got two huge plates full of food!! It was hilarious. She gave it a good try and ate a lot of it. Since they are getting older, my Mom and Dad eat a fraction of what they used to. They can even split a strip steak and be full!! We all just love when we can be together. Ryan had to work at both farms on Sat. and didn't get to make it to dinner. We all went to Gio's new house after dinner and watched football and hung out. Ryan and Stephanie came too. Ryan got to eat mexican food too. He just had to go to Chipotle and get his though. Here is a pic of the whole gang at Gio's. Gio was taking the pic.

 

We were sad that Sis and Bruce always miss everything. They were in Charleston, South Carolina all week. Kristen's friend, AJ was getting married and Sis was his groomswoman. AJ was one of her roommates in the big house she lived in with him, Asher, and Paul when they were in medical school.  They were all her bridesmen in her wedding. Here are a few pics of them from the wedding. They do not take many pics and when they do, they usually use their phones and they are usually blurry. I bug Sis all the time to take pictures, but it doesn't work.

Asher, Bruce, Sis, and AJ

Bruce and Sis

My Mom and Dad stayed overnight at Gio's with Lauren and Gio since they have two big beds. They came back in the morning and Mark made a huge breakfast. They left after noon to go to Columbus for calling hours of a friend of theirs and then stopping to visit my sister, Linda and her husband, Wayne. They sure are the little travelers. Always so busy!!

We will be heading to Michigan on Wed. for labs, doctor visit, and chemo. We will come home on Thurs. Please take a moment and pray for all of our friends with CC, other cancers, and Lauren. Many are not doing well right now and really need prayers. It breaks my heart every day when I check FB or cc.org and see so many suffering. We have got to find a cure. Thanks for reading and God bless you all.

Love, -Pam