Friday, August 31, 2007

CEA

I just found out my CEA level is up to 10.7. Yikes! That is not a good thing. I am a bit emotional today for a few reasons but that kind of just put the icing on the cake. One of the reasons is Doug and I are going to have a little of ourselves time this week which is great but I am going to miss Ella tremendously!!! I have already cried once today about it. Now that I know my CEA is rising, (possibly meaning the cancer is growing, not absolutely the case though) this scares me and upsets me. Just having a bit of an emotional day or atleast a few moments. I just wanted to let you all know what I found out. Shawndra

Labor Day

I am so sorry that it has been so long since I have written anything. It has just been crazy in my life lately, between all the travel for medical opinions and caring for Ella I haven't had much time. When I do get time, I take that time to sleep!!! I love sleep. I need a lot of it. I visited yesterday with my oncologist in KC and gave him the plan that my oncologist at MD Anderson suggested. My doctor here played devils advocate and asked why I need to do chemo at this time because my CEA has been down and the scans aren't showing much. Everyone elses opinions though have been to go back on chemo and surgery isn't really suggested at this time. I am going back in a week and a half to see the doctor at Creighton again, he wants to take another look, an exam under sedation and make sure there isn't anything he can do surgically at this time. So, most likely I will be starting up a new regimen of chemo in a few weeks. This week is a relax week from everything then the following week I have a left ureteral stent replacement procedure Monday then I will go to Creighton Tuesday and Wednesday. The following week I will have a MRI and probably start chemo. I had bloodwork today, I hopefully will know the results before the weekend.
You know, I just realized, this is my year anniversary from being diagnosed. It was actually this day a year ago I had my colonoscopy, I rememeber because I had to wait the long holiday weekend to find out that the biopsy was positive for cancer. We knew it looked really bad in there and that everyone was very concerned. I can't believe I hadn't remembered that until just know. So I have survived one year of this ordeal. I plan to live many, many more!
I hope you all have a wonderful holiday weekend. Please be safe! I don't know if I will write next week, but I will let write soon when I have more to tell. Thank you all who faithfully check my blog. I appreciate it so much. I am so grateful for everyone's support and love they have shown me. I am doing well right now, I love feeling normal now that I have been off chemo for almost two months, ahh!!! I know though, that I still have more of a fight ahead. I have just been getting all the information together to figure out the next step! I will be praying for you all, my support team. You are in our prayers every day. Ella and I say our prayers at night before she goes to bed and we pray for everyone out there praying for us! Go out and have some fun! Enjoy the weather while it is still warm. As much as I look forward to fall, I will soak up the warm weather for a few more weeks! Until next time...
Love always, shawndra

Sunday, August 26, 2007

Exhausted

Well, we are back from Houston. We met with the oncologist on Wednesday and actually felt like he made the trip worthwhile. He had a plan of action, restarting chemo, with another regimen, similar to the one I have done before but with a couple different medications. We didn't get into side effects, I have looked into the side effects of these and they are fairly similar to the folfox that I had been on. This new regimen is called Folfiri. I made an appointment with my oncologist in KC to tell him the game plan. I plan to continue to follow up with the oncologist at MD Anderson, since we really like him and the way he didn't waver on what to do. I will get my treatment here but then go to Houston every few months to have him check and see how I am doing, get testing done to follow my progress on this drug.
We got back on Thursday, then Friday night, I had a group of girls over for a "Desperate Housewives" slumber party. I am kidding about the desperate housewives part though. Then Saturday the husbands and kids all came out to the lake. It was a really great time. I really love this group of women that I have gotten to know, they are incredible people and they just make me so happy. Thank you to you all, I think you know who you are.
I have noticed that some of my fingers and toes are starting to go numb a little, I believe this to be after effects from chemo. It is a very strange feeling and it makes it more difficult to get Ella's little buttons on her clothes, etc. Otherwise I am feeling pretty good with the same old pain. I have a really hard time getting up in the morning, my body is so stiff, it hurts to get up and it takes awhile to get myself going in the morning.
I feel like there is so much to say, but I am working on getting all my paperwork organized on my desk, nightstand, etc. I have stuff everywhere and never sit down to just go through everything so I can throw things away. I hate clutter!!
I hope you all have a great week!!
Oh, I forgot to tell you all. Ella started a tots gymnastics class. We went to a make up class friday since she missed her first day when we were in Houston. She absolutely loved it, especially the trampoline. I knew this would be a hit, she loves jumping on our couches, to chairs, etc. I hope this keeps her from doing that and keeping that energy in the gym, hehe. Thank you for your continued prayers. I will continue to need them as I am still fighting for my life and hoping to prove all these doctors wrong that there is little chance of long term survival. I need all your prayers to help me win this battle. I appreciate you all so much, I wish I could personally tell each and every one of you! Please pray for Christy and Michelle, two other woman who are fighting Cancer who I communicate with from time to time. We mothers need to stick together! Shawndra

Tuesday, August 21, 2007

Andrea's Birthday

Happy Birthday Andrea!!!!! Please give her as much love that you all gave me for my birthday. She is such an incredible, wonderful person, friend, sister, mother, wife and daughter. She deserves nothing but the best. Unfortunately I can't be with her to celebrate today, but I will make up for that this weekend hopefully! I met today with the surgeon at MD Anderson. He doesn't think I am a candidate for any type of surgery. He stated that my disease is or atleast was at the beginning, quite large in amount. He thinks chemotherapy is the only option at this time. I have my CAT scan tonight, then I meet with the oncologist tomorrow. In the mean time, we are going to go have some fun.
Everyone talks about me being courageous, strong, etc. Today, as I was sitting, waiting to be seen, the nurse came out and called out "Ginger". A young girl about 8 years old, said, "that's me!" ugh. This young girl going through this is absolutely heart wrenching, she is "strong and courageous" for battling cancer at what should be one of the best times of her life, her childhood. Not me. I am just doing what anyone else would do. I see Ella, and she reminds me to keep up the fight everyday. Thank God for her as well as the rest of my family, friends and tremendous support system. Thank you! Anyway, we are going to go play. So far no severe weather to report.
Andrea, I love you, I hope you have a fantastic birthday today!
Shawndra

Thursday, August 16, 2007

Biopsy

Well, I have great news.... the pathology from the biopsies all came back negative. Thank you God! He is definitely hearing our prayers and I believe I am going to be living proof that miracles happen!! I hope he is using me as proof that he does exist and to convince those who are unsure, as I have been in the past!
The next step, get more information from MD Anderson and then from Dr. Foster in Omaha to make an informed decision on what to do with the cancer that still exists in my abdomen.
Ella is enjoying daycare. She got a fever though on Tuesday so couldn't go Wednesday. Thankfully the fever only lasted about 12 hours, but it did start to scare us, getting up to 103 degrees. So we have been hanging out the last couple days. She continues to peepee and poopy in the potty fairly regularly. We are still using diapers. I am unsure if we should switch her to pullups or those underwear with cotton inside and Vinyl outside or what to do. Any suggestions from all those experienced mothers out there?
I better go, we tried to put Ella to bed, she is kicking her crib right now. I look forward to a fun filled weekend. I hope you all have one as well! Take care. shawndra
PS. I think a thunderstorm is coming, weee, I am going to enjoy sleeping with the storm, ahhhhhh. night night all.

Monday, August 13, 2007

My Bumm

Ugh, my bumm, my bumm, it is so numb, hehe. Not really numb but sore from my procedure today. I thankfully was asleep for the whole thing, I can't imagine what she did to make it so sore when I woke up. I don't wish to have any type of cancer at all, but it is definitely no fun to have my bumm the center of attention at times. ya know. But, I did get good news. My doctor did biopsies, and got some immediate results, from these they did not find any cancer. She has other biopsies that are sent out. But she said, all she found was inflammation, so this is really good news. I was a bit out of it when she talked to me, so I will have to ask my mom what else she said. I do remember she wants me to get the stuff done at MD Anderson, but then she might want to go back in, do laproscopy to take a look at my omentum to see what it looks like. Which is what I would like, to see if the cancer has improved in the omentum. But I will definitely take this good news. Again, I have been a bit groggy today and in some pain, in my bumm, I like saying that word. Otherwise I am doing well and am at home. Ella had daycare today, she cried when I left this morning. That was really hard to leave her, but I knew she would be fine in only a few minutes. She seems to have a great time there and starting today her cousins Keaton and Avery will be there as well. That will be fantastic! I don't have much else on my schedule this week, that I know of at this time. I leave for MD Anderson next week. I will keep you all posted. If you haven't read my last blog titled "symptoms", please read it. I hope it helps some of you out there. I think I am going to email Oprah one more time and really encourage her to do a show on cancer in younger people, more and more are popping up, it has to be addressed!!! We have to find a way to stop it from happening to more and more of us! Feel free to email her as well, if you haven't already. Thank you for those of you who have.
I want to thank you all who comment on my blog, I have said this before, but unfortunately I can't write each of you back, mostly because I don't have your email and can't reply to the blog comments unless you give me your email. But there are so many that I would love to respond to and tell you how much I appreciated your comment. I continue to be amazed at all the people from all over who read the blog and respond. Thank you. I will talk to you all soon.


Below is a video of Ella practicing a trick her Uncle Malcolm taught her over the weekend.

Sunday, August 12, 2007

Symptoms

Hello Everyone- I hope you all had a great weekend. I had a good but difficult weekend. I can't really talk about the difficult part because it affects others than just me. We did go to Pittsburg/Frontnac for the weekend which was fun. We stayed with Doug's Nanie and Papa and had a wedding on Saturday evening. I danced and had a great time. I did have some other things on my mind, but I still had a great time! I want to thank Brandi and Jan for your help this weekend. I appreciate you both so much!!
This week is fairly low key. I did talk to my surgeon on Friday. She wants to take me back the OR for another procedure under anesthesia, tomorrow (Monday). She is going to another exam, similar to the endoscopic ultrasound, but not the ultrasound part. She is going to take more biopsies with larger amounts of tissue. From what she saw when I had surgery in January, she is very skeptical that this recent mass is not a cancerous tumor, even though the biopsies came back negative. She also thinks that the scans and CEA marker are not truly showing what is really there, she thinks there is more cancer than what all these tests show. So tomorrow I will not eat again before the procedure, pretty much from the time I wake up. Then I have to be there at 1100, they will put me under anesthesia again and they will take the samples and then I will wake up. Hopefully not a big deal. She might know something after she does the procedure, but again I will probably have to wait for the biopsy results.
I wanted to address a question several people have emailed me lately. I have had several women ask what my initial symptoms were that led to this diagnosis. I have addressed this before, but that was much earlier on in my blog. I don't expect everyone to be able to read all that! My initial symptoms were about 6 months after I had my daughter. I had abdominal cramping (pretty severe, doubling over in pain), constipation (pellet stools or even dust, not being able to get it all out, straining, going several times to try to get it all out) and eventually I had blood in my stool. I have had several people email me that are concerned that they have these symptoms and what to do if they do. Please, go see your doctor right away, if they brush you off saying it's nothing but you don't feel like it is nothing, push them or go see a GI specialist and get a COLONOSCOPY! Truly, it isn't horrible, the worst part is the prep but it is a nice nap, you don't even know they are down there! Please don't ignore it!!! If it is caught early, it can save your life. I hope this helps all of you who do have symptoms. If you have more questions, please email me! I did find out that the girl I was recently asking for a prayer request for did find out she has cancer and I believe is undergoing surgery tomorrow to remove it. Please pray for Michele that her surgery goes without complication and that they are able to remove all of the cancer! I will be praying for you Michele! Have a great week. Good luck to all the kids going back to school and all the parents taking there kids back to school. Please keep my family in your prayers, we continue to need them! We appreciate all of your support, again I feel like Bartles and James when I say that,hehe. shawndra

Wednesday, August 8, 2007

Ella's first day

Well, I got Ella off to daycare. Doug and I took her this morning. She seemed to do well. She went off to explore some of the toys, then she would come back to me, kind of fussing saying, "mommy", but was easily distracted with all the toys. Leslie, one of the care takers (for lack of a better word), called around 9:30 and said she was doing great. She fussed a little when she realized we were gone, but otherwise was doing very well!
I wanted to send out another prayer request. I was contacted from a woman who read my blog and was having similar symptoms to mine. She had refused the colonoscopy, until she read my blog and just had it done. Unfortunately they did find polyps and were concerned about one of them being cancerous. They do think though that if it is, it is in the early stages. Please pray for Michele, I know that this is a very scary time! I hope she has the support I have and I hope to share the support I receive and extend it to her!
I also just got a call, as I was writing from the cancer center about my labs. It looks like my CEA is stable if not going down slightly. It is 6.9. It had gone up slightly previously to 7 something, but now has gone down a bit. This is good news. Atleast if the number is staying down, especially now that I have been off chemo for a month, that the mass is probably not cancerous, as was thought with the negative biopsy, but still concerning. I don't know if I am making sense. Doug and I had a restless sleep last night, so I am not completely on top of it mentally. But the bottom line, is this is promising news! Thank God!
I had a nice visit from a friend this morning, who is in Seminary in Chicago. He is in town and so I got to see him and talk to him quite a bit. This also distracted me from thinking of Ella, which was probably good! I was a bit concerned the neighbors might start talking, now that Ella is off to daycare and Doug at work, another man coming into the home. Not to worry folks, he is just a good friend who is becoming a Priest, hehe.
I am hoping to hear from my surgeon today, she did call me last evening, but I had left my phone at home while we were at dinner, so I missed her call. I will let you all know what she has to say and give you the report of how Ella's first full day was. I am going to get out a bit with my mom to shop, and have lunch. I have an appointment to see my counselor this afternoon and then I will go pick Ella up. So I am keeping myself busy. Talk to you all soon. Please keep praying for continued good news, and thank God for the good news I have been receiving. Thank you all for you continued support. shawndra

Tuesday, August 7, 2007

Tiffany & Co.

This is a picture of Doug and I before we went out to dinner for our anniversary. We had a great dinner at Nick and Jake's. I, unfortunately, was in a lot of pain, even after taking pain medication, so we didn't have a long evening. I was very pleasantly surprised with a small, light blue box in the middle of the dessert tray. I hadn't even noticed it until the waiter was telling us about the dessert's and said "or maybe you want the blue box in the middle". I was still staring at the large hunk of chocolate cake, hehe. Don't put something important next to chocolate, it won't get noticed, ha. Anyway, Doug got me a beautiful gold ring with little diamonds sporadically around the ring. It is gorgeous, he did an amazing job picking it out! Thank you baby, I love you. I did come home and take more pain medication, which has thankfully kicked in. I was getting a bit concerned that I would have to take another trip to the ER, ugh. It didn't even make me loopy, which I thought it might, because I had to take more than usual. But I just feel good again, thank God. Anyway, we still had a great evening celebrating our anniversary. Doug is truly the love of my life, even though he can drive me crazy at times, hehe. I have everything ready for Ella to go to daycare tomorrow. Wish us luck! shawndra

Anniversary

Doug and I have been married 3 years today. Happy Anniversary Baby! What a wonderful (most of the time) three years plus the two more years we have been together, it has been. Obviously we have had our trials but we took our vows seriously and we are being tried of our dedication to those vows. We meant it when we said, "for richer and poorer, in sickness and in health". I don't know, now that I think about it if I agree with the statement, "until death do us part". I don't think death will part us, atleast not our souls! Thank you Doug for an incredible 3 years of marriage. I respect and admire you, and love you as a friend as well as a husband and a father.
On another note, I have a couple prayer requests: for Mike O'Reilly who was just diagnosed with lung cancer. His sister, Kelley comments on my blog quite frequently. They were family friends growing up. Even though we haven't seen each other in years, it has been wonderful to be reunited even through this blog. I pray for Mike and your family who is going through this difficult time. I pray for a good outcome! Please let me know if there is anything myself or my family can do for you all! Also for Jennifer Ireland's family. It has been 6 months from her passing. I think about her and her family a lot. I feel like part of their family and pray for them. Please keep praying for Jan, Bob, Chris, Emma and Peyton (did I spell that wrong?). They are incredible people and I hold them close to my heart.

I had an appointment with my oncologist yesterday. I had lab work done, so I will hopefully know what they are sometime today. They drew a CEA, tumor marker, which after talking to Dr. Foster at Creighton, he said this would be an important factor in figuring out what is going on.. since my oncologist really doesn't know and kind of talked in circles yesterday. We are still waiting to hear from my surgeon who should be back to the office today. I hope to hear from her maybe tomorrow, I know they have a stack of stuff when they get back in town. As Doug said last night, it must be hard to be a physician, going on vacation, you have double the work when you get back. I guess it is probably like that for everyone, isn't it? It almost makes vacation not worth it, even though it is!!! Anyway, I will let you know how my labs come out and what I find out when I hear from my surgeon. In the mean time I am on hold with chemo or any other treatments. I will be going down to MD Anderson from August 20-23 with Doug, Ella and my parents to be reevaluated there and see what they have to say. I will not give up!!!!
One last thing to tell you. Ella starts daycare tomorrow. It will be a difficult morning tomorrow when I take her there and leave her. ugh, I don't want to even think about it. I am glad we are putting her in a daycare though, I think it will be good for her, more socialization with other kids, etc. She will only be in two days a week, so i will still have lots of time with her. I hate to admit it, but it will be kind of nice to have a couple days to myself to get errands done, or just relax for a change. Ella continues to work on peepeeing and pooping in the potty. I believe it has become more of a game now though, she does it quite often, but doesn't really do anything on the potty. It is very time consuming and we go through a lot of diapers. I plan to go get some training panties to see how that goes. We tried pretty underwear this weekend, but they got soaked quickly. oh, the trials of potty training.
Oh, I want to say congratulations to Lisa Mudge, another friend who comments often on the blog. She just had her second child yesterday,a baby girl, Madison (one of my absolute favorite names)! Congratulations, I am so glad you are all doing well!!!
"Get the lead out.. That is all." (quote from Better off Dead). Ella is into the dirty clothes laundry basket, gotta run....shawndra

Sunday, August 5, 2007

Life is Good

Hello- I am just feeling so good and living to the fullest. I have had some great experiences this weekend and want to share them with you. The weekend isn't over yet though, so I probably have more to come. Yesterday, (my cousin, Leanne's Birthday, Happy Birthday to You!) we went to a birthday party of a friend's daughter. It was a roller skating party, it was a blast! I haven't been roller skating in years. It was so much harder than I imagined. I ice skated for 20 some years and this was definitely a challenge. I couldn't believe it. It was so much fun though, you should all make plans to go roller skating, it brings out the kid in you! Thank you Jen, Larry and Katherine for the great time.
We went out with one of my good friends, Dustin, who is moving back from Chicago soon. We had a fantastic time with her, her date and their friends. We don't get out much, so it was really nice to get out and "party" a bit. Thank you Dustin and Kevin for hanging out with us, the old married couple with a kid who doesn't get out anymore, hehe. Last night, Doug and I hung out around here. It was really nice to just get to curl up in my chaise lounge chair (which I have only sat in a few times, it mostly acts as a place for all my clothes) and I read. Oh, another great moment this weekend. My friend Dustin, (she is a girl, by the way, for those of you who don't know, even though she has a boy name, sorry Dustin) took me to meet a Priest that she speaks very highly of and has wanted me to meet. We got to sit and talk with him for quite awhile, it was a pleasure meeting him! He gave me some literature to help increase my knowledge of the Catholic faith. It is basic information, which I need. As Dustin and I said, we need the book, Catholics for dummies! Apparently this book exists too, wow! So last night,I sat and read these books, a bit more of "90 Minutes in Heaven" and then finished with my "trash magazines", "People".
This morning, my friends and neighbors, Brandi, Kelly and I went to a new church. It has a great story behind it which I can't relay to you, it would take too long. But essentially Brandi came across this wonderful man, who happens to be a Pastor of a very small congregation off Shawnee Mission Parkway. She was so impressed by him and her encounter with him, she told Kelly and I about it and we immediately told her we wanted to meet this man and go experience this church. So, the three of us went this morning, not knowing at all what to expect. We were so pleasantly surprised with this congregation. There were about 15-20 people there today at this service. They were so warm, kind, caring and embraced the three of us with open arms. The most important aspect was their love and appreciation for God. I felt so connected and that there was no other agenda than to love and thank God! We unfortunately had to bow out early. Doug graceously took Ella and Brandi's girls while we went.The service ran late so we had to get home to relieve Doug. But we are hoping to go back and experience this wonderful place again. Thank you Canaan for your warm welcome and open arms. Thank you Pastor Smith for making this experience possible by as simple a gesture as handing Brandi a card saying, "Don't forget, Jesus loves you".
What a weekend. And there's more to come! I want to thank my husband who is being so kind so that I can do all these things and allowing me to live life to the fullest and watching Ella during these times when I can't have her with me. As I have attested to before...I am blessed with so many wonderful people in my life and so many great opportunities I have had. I have had and continue to have a great life and thank God every day for this life. I am sitting next to a picture, my Uncle Malcolm gave me of a pair of hands, one hand of a very young infant, holding onto the finger of an old hand. This is a picture he took. In the corner he put the quote "The Gift of Life knows no age." I had to think about that for a long while, but I think I am starting to understand it. Life is truly a gift we are given. I am thankful for this wonderful gift! Happy Sunday everyone! shawndra

Wednesday, August 1, 2007

Future plans

I took my mother and Doug with me Monday evening to visit a cemetary to make my future plans.... for about 60 years from now. I didn't realize how much goes into a funeral and burial. I decided I wanted to plan ahead, so that these decisions aren't left for my family, who would have to do all this while grieving. I also decided, I want to make sure I get what I want so I better plan it. I am glad I went, and I found a spot that I really like, under a tree, a quiet, peaceful spot. I have to find out availability and who wants to be with me, but I think I will proceed with this. Have you all given any thought to what you want to do or where you want to be? I think it is actually a good thing to do ahead of time, even though we don't all think about it. Anyway, enough of that talk.

My labs for today and chemo for monday were cancelled until we figure out what is going on and what the plan is. I haven't heard from my oncologist, I will try to get ahold of him tomorrow if I haven't heard from him. I know he just got back in town and probably has a large stack on his desk. I will give him a little time, but not too much, I don't want to wait too long. I gotta keep pestering them, I don't want them to forget about me, hehe.

What else was I going to tell you? I went and got my nails done on Monday, I ended up getting fake nails put on, which I haven't had in years. It was fun, and I love looking at my nice, neat nails all the time. My nail polish was called "My Chihuahua Bites" that made my decision right there.

Oh, Ella poopied in the potty yesterday. I think she wasn't sure if that was okay, she immediately got off and looked at it and said "Uh Oh" several times. Then she sat down and did it again, got back up and didn't want to sit back down to pee pee on it so she pee'd all over the floor and down her legs. It was funny and messy! But I was so proud of her, I kept singing, ella peepeed in the potty, do do do do do do. (imagine a cha cha rhythm). I think this is all the news for now. I am just laying low this week and waiting for more answers to come.

I wanted to let you all know, The Jennifer Ireland Foundation is having a Golf Tournament on September 22nd in Blue Springs. This is a great cause, for those of you who don't know, the proceeds go to young cancer patients, to help them with extra unexpected expenses while they are fighting there cancer. I was privileged to be the first recipient from this great foundation. Please help support them!

I will let you all know when I know more about my treatment plans. Stay cool! Shawndra