Post christmas let down and chemo

I hope everyone had a very memorable Christmas as we did! It was wonderful out at the lake. Only thing is we don't get great sleep because the kids don't sleep well. But it was one of the best Christmas's in a long time for our family!!! It wasn't gifts that made it great, it was the family, togetherness, happiness and love. Sounds like a cheesy book doesn't it. I did have chemo starting the day after Christmas. This round didn't go as well I had agitation as well as I got sick the first night. I pretty much spent the last couple days in bed feeling in a fog and agitated. Today I feel a bit better, still tired and today is my emotional day when I have enough energy to let it all out! So hopefully tomorrow will be better. Thankfully my parents were there for me yesterday when I got my pump of and had to stay for fluids and medication. Thank you mom and dad! I am thankful that today is Saturday so doug was home and Angie was here to help with Ella. I am so lucky to have such great help. So hopefully I am on the up swing and soon we will go skiing. weee! I also found out that the doctor I saw recently from KU took my case to the group meeting with a bunch of physicians/surgeons and that a surgeon may consider me as a candidate for surgery as well as the doctor from Creighton. So it looks like I may have a few options. So this is good news. I wish you all a Happy New YEar! Leisa- I hope that you can think of all the great memories of your mother. I know it must hurt and be a very difficult time. You are all in my prayers! I think we are having a New years get together this year, so hopefully I will get my energy up so I will have a good time. Talk to you soon. shawndra

Merry Christmas to All!

Merry Christmas everyone!! I hope you all have a very memorable Christmas! I hope your travels are safe, and Santa brings you lots of goodies, hehe. My Christmas wish may come true! I heard from Dr. Foster ( the surgeon from Creighton) last Friday. He looked over my most recent scans and consulted with another one of his partners. They agreed that they want to do a procedure to atleast take a look inside of me and possible do a major surgery to remove cancer, do the intraperitoneal chemo flush, whatever they can do depending on what they find inside me. So it could be a small procedure if they find too much they may not be able to do much of anything. If there is stuff they think they can remove to benefit me, they will do that and it will turn into a much more invasive surgery and more recovery time! I have to finish up some chemo for another month and a half and then I will have to take a month off of chemo before I can have the surgery. So it probably won't be until late February/early March. But this is what i have been hoping for. My biggest fear though is that they will get in there and not be able to do anything because the cancer is too invasive and not removable. But I will atleast know for sure at that point and not be unsure if the scans are showing accurately what is in there. So Yaa!!!

Tomorrow, Christmas Eve, I have a few more errands to run then it is time to get ready for Mass and off to the Lake we go to celebrate Christmas with my family! We celebrated today with the extended family and a bit last night with Doug's family. Let the festivities continue! I am so excited though to see the kids open there gifts tomorrow night then get in our pajamas and snuggle in, then wake up christmas morning to open santa's gifts and play all day in our PJ's! Ahhhh, it is going to be the best Christmas ever!!!!

Oh, someone asked about Ella's potty training alittle while ago! She is doing great, she isn't in underwear yet, but she is going more and more on the potty. At her new daycare, they ask frequently if anyone needs to go, and she is the first one to chime in and go. She had kind of forgotten about it for awhile but now she is back into going potty on the big girl potty both 1 and 2. So it is going well, we are so proud of her!

Well, I wanted to wish you all a very merry christmas, or happy holidays if you don't celebrate Christmas! I will say a prayer tomorrow for all of my new found blog friends and family. I will thank God for bringing you all into my life to help me through this challenging time. Ho, Ho, Ho, Merry Christmas to all... and to all a Good Night!!!! Shawndra

Hey everyone- Happy Monday to you all! I hope you had a great weekend! We had a great weekend. We did get some snow but it was very cold and not really enough to take Ella out to sled or build a snowman. She did briefly go down on a sled yesterday at Nana's house. I don't think Ella really enjoyed it though. Oh well. We had a fun event last night. Nana and Grandpa's neighborhood had a Christmas pot luck and had sleigh rides. It was soooo much fun to be on a sleigh with horses. It was a bit smelly in the front row and it was interesting being on a sleigh on Switzer Road (a fairly busy street). But it was a great time, thank you Nana and Grandpa!

Thank you all for your loving words, support and wisdom. I am so blessed to have you all in my life, even if some of you it is just a computer relationship. It doesn't seem like it, it feels just like a real relationship, except it does seem a bit on sided, sometimes. I am so lucky to have so many wonderful friends. Shawny- I understand your frustration with the system, I wish it were better too! I am the very last person to talk politics, but I guess we need to really educate ourselves about our possible Presidential candidates this upcoming year. The next President could make a huge difference in the health care system and changing it for the better. So we need to educate ourselves and vote. I am very guilty of not voting, so I am telling myself this year, it is very important to have my voice heard. One small voice can make a huge difference!

I am off to get cleaned up for the day. I am going to go help my parents decorate the lakehouse, where we are going to be spending Christmas Eve and day! I can't wait. We have that to look forward to and then we are going skiing in a few weeks too! So much to be thankful for and to celebrate. Thank you all for your continuous prayers for the miracle I believe will come! I have to believe it will! I am going to do everything I can to make it happen!! I have so much to live for! We all do! Love always, shawndra

Upset

Well, it looks like I might have hit a nerve with someone. I am sorry Shawny, I get as frustrated with the system as you do for many reasons. Most of which, the system can't cure me and allow me to live more than maybe 4 years if I am lucky. At least that is what I was told today. So, I am frustrated too. I did have a connection, but one for Colorectal cancer, and that is partially because I, also, work in the medical field and work with physicians who have many contacts all over the place. Trust me, I had to spread the word far and wide to get the connections I did have. As much as I would love to help each and every person, I unfortunately cannot have my dad call for someone, especially because he doesn't even know the situation. That is why I recommended being persistent, that is what we did and that is how to get through the system, call, call, call! That is how I did it and that is how I think everybody has to do it. I wish her the best of luck, I don't mean ill harm on anyone. Nothing is easy about this!! I make calls almost every day to one doctor or another, I am consistent and persistent in trying to find the best treatment out there for me and monitoring my own care. I have been let down countless times, even today. The doctor basically said the treatment I am on is the best treatment right now until I start to fail with that treatment then there are a few more options. So I guess that is the bright side of it, I still have a few options left to try to keep me alive longer. That is all they can do, try to keep me alive longer. I don't know if that is good or bad. Would I rather pass away now when my daughter won't remember it, or in 4 years after these past several years watching mommy suffer on chemo and when she will know me better and know what is happening? Take your pick! Either way, I am going to break my daughters heart and I can't stand it!!!! I can't believe I am going to do that to my daughter, and I have no control of it! So, please don't add any guilt to my plate, I have enough to last my lifetime! I will keep this girl in my prayers as I do all of you who are suffering with cancer and all of you who help me each day by reading this and supporting me. Thank you. Good night all. I am hoping to wake up to a snowy winter wonderland tomorrow so we can go sledding and build a snowman with my family! Gotta cherish each moment. love, shawndra

Answers

I wanted to answer a couple people who have commented on my blog about something. Sue- I have checked into intraperitoneal chemotherapy. Dr. Foster has mentioned that might be a possibility when/if he goes in to do another surgery. Otherwise no other physician has thought I would be a candidate for that procedure. Thank you for checking into it for me. I greatly appreciate it.

I also just had a comment about someone's sister being diagnosed recently with a type of uterine cancer trying to get into MDAnderson. I would continue to call and be persistent about getting in to be seen. I am fortunate that my dad is a physician so when he calls, usually people respond quicker. I had a few other people calling in for me to get me in so I got in fairly quickly. It took a few weeks but not too long. I think it helps to have a connection if you can think of one or know of someone who can call in your behalf! I hope you get there and get some answers!

I had a much better week than the last several weeks. I rested a lot yesterday and some today but I have felt a lot better. No gittery symptoms or other major problems. I do have a urinary infection again so am going to start more antibiotics. I got my pump off today so I am free until after Christmas. I actually am scheduled to go back the day after Christmas. I will see the new doctor at KU tomorrow to see what he has to say about me. I am anxious to see if he has anything new to say or add. I hope he may have something else up his sleeve. Everyone have a great weekend. Enjoy the beautiful snow we are supposed to get here in KC Friday night and Saturday. It is supposed to be good sledding and snowman weather, wee! Good night everyone! Gotta got peak in on my wonderful punks before I head to bed. Shawndra

So long

Gosh it feels like I haven't written forever. I actually did write a blog on Saturday afternoon, but as soon as I went to send it an error occurred on the computer and lost it. Ugh, don't you hate that when that happens, so frustrating! Ella has been sick for the past several days with really high fevers mostly. She did have strange skin irritation or rash in the middle of the night one night and one night, as she ended up sleeping in our bed she was breathing so heavily, it scared me. It's one of those things where you sit there and think, do I need to take her in to the ER or wait it out. I am sure all parents have experienced this! She is doing much better now though and we actually sent her off to her new daycare this morning. Long story but we had to change daycare's since our old one was making some changes and it was going to be too far to go for us. She did great this morning, she saw all the fun toys and was off, gave us a kiss and said bye. So we felt good about leaving her, which is always a relief.

I actually have chemo today, it is later in the morning because I also meet with my doctor and he usually doesn't get to clinic until atleast 10 or 10:30. It is actually nice though, so I don't have to get up really early and feel rushed to get there. The weather was threatening to be very bad with a lot of ice this morning, but the roads aren't bad at all from what we have experienced. So I will shortly be off to another round of chemo. They are not going to give me the steroid I believe, this time, so hopefully I won't get the agitation at all. Last time I had it only for the first night but that was definitely enough for me.

Right now I am feeling okay, I am having even more back pain and can't seem to get it under control these past few days. I am also having problems with my bladder/ureteral stent. I am having pain when I go to the bathroom so I am going to once again push to have my urine tested today and if nothing shows up I may have to go check things out with my urologist. Otherwise I am great!

Leisa- thank you for your recent post. I am so sorry to hear about your husband's friend and the families two loses. How devastating is that! I am very glad to hear about your daughter on the other hand!!!

I was checking on Ella last night before I got in bed, as I always do. As I was watching her sleep and stroking her hair, I was praying and was at a lose as to what to pray for. I always pray that I survive and beat the cancer so I can live and take care of my daughter. But I realized there have been so many women who have lost there lives who also have young children. As much as I pray and hope I am not guaranteed that I will survive. These other women were needed by there children just like I believe Ella is needed by me. Why would I be any different than these other women, ya know? So I had a hard time with this last night. Thankfully Doug was there and we had a great conversation as we lie in bed but it wasn't a conversation we expected to have. We talked about what if I didn't live. There are just no guarantees. I will do whatever I can do but as Leisa also mentioned nobody is guaranteed tomorrow.

You are all probably so tired of hearing that. But it that is just what was going through my head last night. So I will leave it at that. This is all for now... oh, I didn't make it to the doctor at KU last week. Ella being sick and I was ssoooo tired from being up all night with her, I switched it back to the original date, which is this friday. So I will know more about that after this week.

Thank you for all your love and support. I hope everyone is enjoying the Holiday season with the gorgeous lights, decorations, songs and just that feel in the air. Christmas is coming soon. Weeeee. I feel like a little kid again. (Probably because we watch TIgger and Pooh's christmas movie EVERY day sometimes more than once a day, ugh)

Ta Ta for now, shawndra

MD Anderson

Well I am back from Houston. I got back last night, on an earlier flight, yaaa! But unfortunately came home to a feverish child. She had her 2 year checkup today and unfortunately was sick as well with a sore throat and ear infection along with the fever. Poor thing, she looks so sad, just limp with her rosy cheeks. On the other hand, I love that she clings to me and just wants me to hold her and lean her head on my shoulders. Isn't that one of the best feelings as a parent!

I am sure you are wondering how things went in Houston. Well good and bad. The first impression from the CT and MRI scan was that there was more cancer in my abdomen. Not a huge amount more but more. The good thing is, it hasn't spread to my other organs, just in my abdomen. My oncologist recommends that I stay on the chemo I am on now. My CEA is now 15, so it has gone down from the last number of 23. That is good. He basically said, the cancer could have increased while I took that month off this summer and still may benefit from the treatment I am on now. If my CEA goes above 30 he recommends I add another agent to the folfiri I am on now. The next agen they use,called Erbitux is the one that can cause a bad acne like rash on your face, ughhhhh!!!!!
So I was a bit upset when they told me there was more cancer, but he reassured me when he showed me the CT scan how little it had grown . I am actually going tomorrow (it got bumped up) to another oncologist at KU Med to get his opinion on things. He is supposed to be very good and possibly have some new research coming up on the horizon that may benefit me. So I will see him tomorrow, if I can get all my information together tonight. There is a lot of information I need to put together for a new physician to review. I am also going back to Creighton in a couple weeks to see Dr. Foster and see what he says about the surgical option at this point. I am still praying the CEA level comes down, come down CEA, come down!!!!!

Otherwise my mom and I had a great trip, it was a fast trip, I was in getting tests all day Monday... all day!!! Tuesday we had the day off to sleep in, slowly get around and finally shop a bit before we met my cousin and his family out to dinner. It was so great to see them, thank you Debbie and Mark for going out of your way to meet with us! The girls are so cute and fun to be with!
I am remaining super busy this week, I am so tired but have so much to get done, it seems. I am having a little neighborhood party this Sunday so I need to prepare for that too.
I hope you all are doing well. Leisa I hope you are receiving good news about your daughter, you have been in my thoughts and prayers! I am off to go snuggle up with Ella awhile longer. Good night to you all. Enjoy the snowy weather, I love it! it is so beautiful! talk to you soon. shawndra