Sunday, November 30, 2008

Not even Pureed.


Hi everyone- This will probably be a quick one. I am getting ready for bed but wanted to let you all know, who don't already... I ended up in the hospital for Thanksgiving, part from my stupidity taking my pain patches off and then also to find out if I did have an obstruction of some kind. I think my bowels just went to sleep on me, but had to stay in the hospital a few days because my potassium was very low as well. I got home yesterday afternoon (Saturday) thankfully. I have chemo again tomorrow as long as everything is good to go. I will let you know. I am planning on revamping my pictures at some point but here is a quick picture of Ella. She has gotten so big.. My big 3 year old, going on 21! Talk to you soon. The dog is snoring, better get to bed. shawndra

Wednesday, November 26, 2008

pureed turkey?

Hey everyone- Happy Thanksgiving to all of you! I am so thankful for so many things, especially to be here with everyone. I have had a few up's and down's this week. I thought I was all better and clear then I started having a great amount of pain (like labor contractions) in my abdomen, above my ostomy Monday night. It was a sleepless night, ontop of the pain, nothing was coming through my ostomy that night. I started to get very concerned that somehow I had another obstruction. With pain significant pain medication and some advice from my dad, at 1:30am, I finally got some sleep. The next morning, I thought things were okay. I got Ella to school and by 10am I started to feel rotten again, not as severe pain but still discomfort and ended up back in bed. I had to cancel my lunch/pedicure plans with my friend Kelly, who immediately came over and helped me all day from consoling me to,massaging my arm and back and even going to the grocery store for me and getting me a smoothy. She was so helpful, I am so grateful for not only her help but her friendship! Betty Boop, I also want to thank, another friend who I got to talk to today and always feel wonderful after talking with her! One more while i am on the thank you/love you roll... thank you Dustin for coming over today and helping me too ( I will get to that in a minute). Ang- I have to thank you too for coming over this past weekend and helping me out with Ella, it is nice to have a friend who i can hang out with and who helps me play with Ella at the same time..

(I didn't want to leave anyone out or offend anyone by not acknowledging them, and I know there are sooo many more to thank, but that is just for the last couple days, hopefully everyone else knows how much I appreciate them, I try to tell them as much as I can).

Anyway, back to my story, where was I, oh, so I made calls all day Tuesday to my surgeon to find out what to do, then after she suggested trying to use a catherer to put through my ostomy ( I know, sounds fun, huh), I had to call around to find that type of catheter to use. What a hassel all this is, while in bed, feeling like crap, just wanting to sleep. Finally I got the products I needed, thank you for my parents who picked them up for me and that evening my dad and Doug helped me do the cathererization. Oh, this is after I threw up. When Ella got home, I sat up in bed to try to look okay and started to feel nauseous. I had not eaten much but had some of the smoothy and tea and every time I just felt fuller and fuller. Finally it just all came out. So when we did the catheter, nothing seemed blocked and eventually things started to go threw last night.

Today I thought was all better. I ate a bit here and there very cautious about what i am eating and how much so as not to have the same problem. Well, I was fine until this afternoon, Dustin was visiting, I had a little applesauce and part of my smoothy from the day before and all of a sudden, I didn't feel well again and within a few minutes I was racing to the bathroom, brought it all back up. I have to say if you are going to get sick, drink something that tastes yummy right before. It is much better getting sick with the taste of Strawberry smoothy than anything else! So, again, I was on the phone to my surgeon, to atleast let her know what happened, especially before the holiday weekend. SOmething always seems to happen right before a holiday, when no one is around, except the stinkin' ER. For now, I am to be on a soft/full liquid diet and see what happens. If things still aren't staying down, I will have to page her(thankfully she is on call all weekend) to get a CT or Xray on Friday and possibly have to be readmitted. ugh. So hopefully things are resolving and there isn't a major problem.

I was so looking forward to gorging myself tomorrow, especially since I haven't been able to eat a lot lately. Now it looks like i will have to be very cautious again and not eat a lot of the food. Oh well, the food isn't everything, right... that one takes a lot of convincing.

We are kicking off the holiday weekend Ella, and I are in our sleeping bags on the floor, Doug didn't get his sleeping bag, but we are all watching Cinderella together and she is getting to stay up late. Wow, I just looked at the clock, it is 9:15p. really late... Don't you all love the Cinderella movie, so good, but those sisters and the step mom infuriate me!!!

Happy thanksgiving everyone! I hope you enjoy every last bite of yummy food, guilt free because everything is fat free on this holiday, I declare. Most of all let everyone know how thankful you are for them in your life and remember all you are thankful for! good night, sleep tight, don't let the turkey's running for their lives bite, hehe. good one I must say. teheehee. Shawndra

Monday, November 24, 2008

Am I awake?

well- This first round back to chemo threw me for a loop. I thought it would be a breeze, since I didn't have a lot of the medicine accumulated in my body and I have been threw it all before but it didn't turn out that way. I was very, very tired for about 3-4 days. Thursday I went to get my pump off and I was so nauseous all morning, I didn't want to get out of bed to go. When I did finally get up, I threw up, so I ended up getting fluids and antinausea medication when I went to the cancer center. I thought I was doing a bit better Saturday morning and laid low with Ella. I was supposed to have a fun night out with some girlfriends. I only got to spend about 30 minutes with them before I had to go home because I felt so nauseous. I thought it was the chemo, but Doug didn't feel so good last night so maybe I got a quick bug on top of the chemo... who knows. Anyway, I am doing better today. I am actually awake and somewhat productive. The pile of papers on my desk that was oozing onto the kitchen cabinets has diminished significantly.
This week is a free week, free from chemo that is so I am happy about that. Of Course it is also Thanksgiving week as well, which is always one of my favorites! I was just looking at a Kohl's ad and actually thought it sounded fun to get up at 4am on Friday to do a bit of shopping. If you know me that is incredibly strange, I don't do mornings or shopping well at all. But it kind of sounds like an adventure.
We get to spend Thursday at my parents with family and friends then we will go down south of here to spend Saturday/Sunday with Doug's family for another thanksgiving. It will be fun. I am very much looking forward to it.
I am so Thankful to be here and to have you all in my life one way or another. Thank you! I have so much to be thankful for and i will definitely be basking in it this week. I am now thankful for water and showers, because I need one, and I need to do it now before I pick up Ella. have a great week everyone. I will talk to you all soon. Happy Thanksgiving! Be safe. Shawndra
PS. I don't think I said, but all my scans that I have had done recently come out pretty much clean, which I know isn't the case because of what my surgeon saw, but isn't that great, but in an apprehensive sort of way. hehe.

Tuesday, November 18, 2008

Back to life.. back to reality

That song just popped into my head. I am sitting here, needle in my chest (port), getting my antinausea medication that they give me before starting the chemo infusions. I will be here for about 3 hours, then they will put the last medication on a pump that I will take home with me for two days, then I come back in one Thursday to have the pump taken off and I am free for a week and a half. That will be the schedule for the next several months. Doug is with me today, yaa!
I had a great weekend. We had Ella's birthday party on Saturday. It was fun, about 13 kids got to get their face painted if they wanted and hair sprayed different colors. They then dressed up in tutu's, tiara's and wands to dance around to music. I was a bit disappointed, they said there would be stuff for the boys, which there really wasn't, except for the hair spraying they liked but they weren't too excited about tutu's and tiara's. I know Ella had fun though and got a lot of fun girly gifts! My close friend, Sara, was in town with me for the weekend which always makes me happy! She is one of those friends that you just feel so comfortable around, you don't feel like you have to entertain, you can just be yourself and can talk about anything. That is a rare find sometimes, I am lucky to have found a few people like that. Unfortunately she lives in Chicago, good to get to see Chicago once in awhile but I wish she was closer so I could see her more often. We had a lot of fun, thank you Sara!

I haven't gotten the results back from my scan last week. Which, I am going to ask my nurse right now if I can get those results! They should have them by now. I will let you know what the findings are.

The plan for now is to continue this chemo regimen (folfiri) every two weeks for the next two -4 months. If my CEA level is not dropping with the chemo after a couple months, then I need to have a CT scan and possibly need to change chemo med's. If my CEA is dropping, then after 3-4 months on chemo I will do my CT scan then and touch base with Dr. Foster about surgery. This is all based on Dr. Foster's plan. So please pray that my CEA level does drop with chemo, that the chemo is killing those "bad" cells,and that my miracle does happen.

I don't remember if I really discussed with you all my appointment with my surgeon last week who did my first surgery and did my surgery a few weeks ago with my bowel obstruction. She is a great doctor, I like her very much. We discussed what she saw when she went in this last time. She saw a lot of little cancerous spots all over my small intestine, kind of like little beebee's all over. Then there is the mass of cancer in my pelvis that is all over the bottom wall, which was what caused my bowel obstruction, because the cancer had wound it's way around the intestine and she couldn't cut it away so that is why she had to do the ileostomy, so I wouldn't be blocked. That was very difficult to hear and picture. Again, it brings me back to reality of the situation so I can only pray for a miracle. I just keep repeating in my head.."I shall not die, but live, and declare the works of the lord." I like that saying. Through him, all things are possible, even miracles! Thank you all for the prayers. I know he hears each of you! I will try to write sooner! I hope you all are doing well too! shawndra

Monday, November 10, 2008

Peeing Prunes

I am sure you are all curious what in the world I am talking about with this title. Well, as you know, I had my port put back in when I was up in Omaha last week. Well, I had been taken off my blood thinner, Coumadin until I had the procedure and placed on Lovenox shots instead. after Wednesday, I restarted the Coumadin but no one really told me what I should do about the Lovenox/Coumadin after the procedure. SO I just did what I thought I should do, restarted coumadin. Starting Friday night and Saturday, I started urinating blood, which is not uncommon with the ureteral stents, sometimes. But this time, I literally was having to push clots through so I could pee. I was pushing through clots the size of prunes through, what would you say ladies, a pinhole? arg! not fun. This was every time I went to the bathroom. So with some good advice from my dad and thanks to my wonderful primary care doctor who I bothered on her personal phone on a Saturday ( I promise I won't do that regularly!) I restarted taking my lovenox shots along with my Coumadin to help my blood thin out as much as possible to get rid of these yucky prune sized clots. Are you all cringing by now, hehe. I told you, I don't hold back much, do I.
Anyway, I had a good weekend with my family, we layed low most of the weekend. We did celebrate Doug's dad's birthday on Saturday night and played our new WII game, it is so fun. Sunday, we went to church and then I got to go see one of my cousins very tiny baby. It was so fun to get to hold a little tiny baby again. I was in heaven! Makes me really realize how big Ella has gotten. Speaking of Ella, she is going to be 3 tomorrow! Wow, already 3. She seems like 3 going on 18. She is a bit more cooperative most of the time, but is at that stage of wanting to do everything herself, well everything she wants to do... but when it comes to having to throw away her trash or hanging up her coat, forget it, she all of a sudden turns into a little baby who can't do it. Ha, not happening girl! She is into the computer right now, we go to mickey mouse clubhouse website and she can sit there for a long time playing the games. She uses the mouse and the keypad with only a little assistance from us. She is her daddy!
I was supposed to have a PET scan this morning but it got rescheduled to Friday. I restart chemo next Monday I think. I haven't looked at my calendar yet to verify all of this. It is a full week of doctors appointments, Wednesday is the dentist, thursday I see my surgeon here in KC, for a follow up of my bowel obstruction surgery. But then this weekend I will have one of my great friends here with me to celebrate Ella's birthday and just hang out with us. I am very excited for that. So there is a lot going on that I am anxious about: restarting chemo infusions for one, but there are so many fun things to look forward to that is coming up...
Thanksgiving is one of my favorite holidays, it is a time when friends and family can get together and just be thankful for each other and for everything in our life. I love Christmas but it has just gotten out of control. We need to all stop obsessing about gifts and everything else. Instead I think we need to simplify the holiday and enjoy the beauty of it all and again just enjoy being together. I know the kids won't understand that, so don't worry I will be getting all the kids in the family a little something!
Well have a great week everyone. Until next time... Shawndra
PS I just hit a wrong button and almost lost this whole thing... Oh my gosh, that was close. I was also going to add for Sue that I am restarting Folfiri, not Folfox. That is all.

Friday, November 7, 2008

here's the news

Hey everyone- Here is the update; things went well with Dr. Foster. As usual it was great to see him. He did his exam under anesthesia as well as put my port-a-cath back in so i can restart chemo. It sounds like, from my most recent CT scan and the exam, that he doesn't see a lot of new stuff, which is good. Things seem to be stable, which is good. Except my CEA level has gone up. So for now, I need to get back on chemo and see how the CEA numbers go, if they are going down after 3-4 months, then there is a possibility he might be able to go back in and try to clean out more of the cancer. If the numbers don't go down, I will probably need to try another type of chemo. So please pray that the chemo again works and keeps things at bay and gets those CEA's to go down so I have that possibility of another surgery. The disappointing part, is that if we take this path, the hope of removing my ostomy may be non-existent. It may be permanent, which is very disappointing to me, but extending my life is more important and I know that, even though everytime I think about it, it brings tears to my eyes. it could be worse!! There are a lot of positives with it. anyway, I have been resting quite a bit the last couple days.
I am looking forward to hopefully a low key weekend. It is a lot chillier here, so I am hibernating. have a great weekend everyone! shawndra

Tuesday, November 4, 2008

United

It is late. We stayed up to watch the presidential election and to listen to Obama's speech. It almost seemed like a happy ending of a movie. However you voted, we have to remember, everything happens for a reason and that goes for this situation as well.

I wanted to let you all know that Michelle, who ran the marathon in my honor, finished the marathon and helped raise a great deal of money for colorectal cancer. Thank you Michelle and congratulations for an incredible feat. I hope you aren't too sore and you're recovering well. Please let us know how it went for you! I wish we could have been there to see you cross the finish line. That is just an amazing accomplishment, one I could not achieve.

I am off tomorrow to see Dr. Foster in Omaha. I am excited to see him. Even if he doesn't have the answers I hope for, I know he wants to do whatever he can to help me. I always walk away feeling good and hopeful. There is so much going on with so many other people lately, that I am so thankful for all of you and your prayers. I want to share you all with them and I know that you support them as well.

I know some of you are following Stephanie Vest, and I don't know details, but, it sounds like they are keeping her comfortable and she feels at peace. Please send out prayers to her and her family as well.

I will let you all know what Dr. Foster has to say when I get back.

I am praying for all of you who are going through a difficult time, as I know many are. I read something tonight that said something to the affect that we have two paths, even when there are problems, there are also blessings at the same time. I believe that is so true.

I have to go to bed, so I will end here. I gotta get up early, and I hate to wake up early. :) Good night all -- Republican and Democrat and all others. I am glad we are called the UNITED states. Shawndra

Sunday, November 2, 2008

God has a plan

Hello everyone- I hope you all enjoyed your weekend. It was incredible weather here in KC this weekend so we had a lot of opportunity to get outside and play! Halloween was a lot of fun, Ella the mermaid had a great time with all her cousins. I got to take her door to door around most of our neighborhood, but had to cut out a little early so as not to wear myself completely out!
This coming week I will be heading up to Omaha for a day to see Dr. Foster, please pray that whatever God's plan for me is to be able to have as many opportunities to be treated and cured as possible so that I may stay on this earth, because I believe that my work here is not done. I believe my work here has just begun when I was diagnosed and that there are many more things that I need to take care of here. Most importantly raising my beautiful, precious daughter, to be a loving, kind, faithful woman who has as much to give as I do. But also to help others who possibly question or doubt their faith. I am learning and seeing that there is a God and seeing first hand how he does take care of us, for example...
I have a friend who wants to remain anonymous, but wants her story to be told to help others. Let's call her, hmmmm, Betty as in Betty Boop. (That just popped into my head, I have no idea why) Anyway, Betty was just diagnosed with breast cancer. It was caught at a very early stage, so hopefully she should be able to be treated and cured. Betty has a history of breast cancer in her family and was supposed to have her first mammogram last year but was scared because she heard it hurt so she put it off. Her sister-in-law and her were talking a few weeks ago and somehow got on the subject of mammograms. Her sister-in-law encouraged her to go get a mammogram and went beyond the suggestion and made an appointment for both of them to have a DIGITAL mammogram on the same day. Well, it turned out that Betty ended up having to go back for another mammogram and then a biopsy where they discovered that in fact she does have cancerous tissue. It is caught so early that only the DIGITAL mammogram would catch it. The general mammogram wouldn't have picked it up. I don't know much about the digital versus regular mammogram but I believe that this is a new testing option. So obviously everyone who goes for a mammogram should request a digital mammogram and if they don't offer it, go somewhere that does. The message that Betty wanted to share with you all is that she didn't wait for a lump to show up before she got the test. DON'T WAIT FOR THE LUMP! is what she stated. If you have a history or you are at the age when you should be getting one, do it!!! Don't worry about a little (or a lot) of pain that is involved, if it could save your life, if you can catch it early. I will repeat a statistic I believe I have written before: One in two men and one in three women will be diagnosed with cancer.
The other thing she wanted people to understand and see is that this was obviously divine intervention! God has a plan and she knows that she and her family have been prepared for this "bend in the road" which they don't believe they would have been able to handle three to five years ago.
I believe that there is a reason we moved to this neighborhood, there is a reason I got pregnant when I did (shortly before we planned), there is a reason Doug switched jobs and we changed our insurance to his, there is a reason we got our life insurance policies less than a year before my diagnosis. God prepared us for what was ahead of us. If you new me two years ago, I would not be saying this. I doubted God existed and here I am now telling the world,(whoever is listening) that God is non-fiction and he watches over us and hopefully answers our prayers not always how we want them to be answered but in a way that he knows is best.
Good night you all, please keep "Betty Boop" in your prayers too!

PS. I just started my journal for Ella. I have wanted to do this for so long but didn't know how to start. I want her to have something from me if I am not there to tell her about when she was little, or give her the advice I want to give her when she is older, etc. I am definitely not giving up hope, but no one knows when there day will come, so I encourage all of you, especially mothers, to start a journal, or video's, or something to have for your children if you do leave earlier than you hoped.