Health Care System

We need to change our health care system. I am glad that it is becoming a hot topic these days because our system is screwed up!!! I don't know what I can do to change it but if I could, I would be a member of that committee or board to give my two cents worth!! I also think I should work for an ostomy company to help them figure out how to make these products better, more practical for all occasions. I just hope to live to be able to have these jobs. I also would like to be a patient advocate for cancer patients, someone they can go to when they are having the problems I am having: unsure which physician to call for different problems, not getting answers, confused, frustrated etc. with the system and not getting the treatment we deserve. ugh! I feel better venting a bit.
I went to see my ob/gyn who is actually the physician who did my total hysterectomy in January along with the rest of my surgery. She specializes in gynecological oncology. I saw her because of the swelling I was having around my left lower abdomen. Every other physician kept telling me I needed to see someone else for this. So they got me in to see her yesterday. She took a look and said she thought it was lymphedema, or swelling because of a possible blocked lymph node down there. She seemed to think this was because of the abnormal cells (cancer cells). She wants to see the results of the recent MRI I had, which I don't even know what the results are yet, they haven't called me to tell me anything. So I called yesterday. I need to call again because I haven't heard from them. I also had to call MD Anderson back because I have tried to reschedule my appointments that are set in November, but I need to push them back a few weeks. I have called 3 times already. They sent me another, I received yesterday in the mail, it was the same schedule as before, ugh!!!
I am just so frustrated right now, I really have to do it all myself and really be my own advocate and that is really hard with so many other things going on. It is hard to keep up with it all.

On a lighter note, Angie, my friend from Children's Mercy, who I used to work with just moved in with us for a little while. Ella absolutely loves her and it is nice having her here. She will live here for a few months to help so she can save some money and she will be helpful to have around for me as well.

My mom is doing okay. She has been getting up and about more, but still gets achy and tired and needs to take it easy still. She thinks she should be up and well by now, she says she feels useless. She said she was sorry she was being a "panty waste", hehe, isn't that hilarious. ahh mom, I love you, you are funny. Now I know where I get this same attitude.

Thank you to all of you who have shown me so much support lately. My neighbors are, as always, amazing to me. They always rally for me and I truly hope I can be around to be there for you all someday. All you bloggers, I love your support as well. I really don't feel the need to see my therapist that much, I think my blog really is like my therapy. As you can tell, I like to use it to vent all the time.
Everyone, enjoy this weekend. I will talk to you all soon. shawndra

Celebrating a wonderful life

Steph Beauchamp, this one is for you, hehe. I am plopping down on my chair to write a brief note. Doug and I are exhausted. We just got back from the Celebration of my uncle, Jack's life. It was a great tribute his family gave him!!! It was great to have all the family together again as well. I am so proud to have such a wonderful family on both sides! I want to thank you all for your love and support and being there for me. That is a good, strong family, who loves and supports each other unconditionally. I would like my funeral to be like today's, telling stories, laughing, crying and celebrating my life. Jack, you will be missed by so many but I hope you are enjoying heaven. We will see you again soon.

I am drawing a blank on what else to write for now. Usually I have so much going through my head. I think it is just because I am tired. I am feeling pretty good, just the same old pain, otherwise plugging along. Ella has daycare again tomorrow, it is nice to have that time to get a few things done as well as some time for myself. I just have to get my labs done in the morning but these aren't very interesting labs. So I won't have much to report. They aren't drawing my CEA (tumor marker) for a couple of weeks. Sleep tight everyone. It won't be as nice though as last night, sleeping with thunderstorms, ahhhh. The only bad part of that was Lexi, our dog, kept us up part of the night. But then Ella and I slept in, I almost forgot she had daycare this morning.
Please keep my dad and his family in your prayers. Enjoy hump day tomorrow. Take it how you will, hehe. shawndra

Who ya gonna call... ghostbusters

Snappy title, huh. I will get to that in a minute but I want to let you all know my mom is doing very well!!! They did find in her knee surgery that her meniscus was twisted and pushed up into her knee socket basically. The doctor came out and said, " she is one tough old bird for walking around with that". She is one tough... young.... bird. hehe. I unfortunately couldn't be there for her like I wanted to. I took her to the surgery and stayed until she went to recovery. My dad was able to be there and I was having this strange abdominal pain, partly felt like a pulled muscle or hernia, the other was a cramping pain. I was hoping it would pass, but then after talking to my husband who says, shawndra you have to get that checked out, I called my doctors and got in to see my surgeons partner who took a brief look at my abdomen and said, I don't see anything. You could have strained something, ugh! First of all, I never know which doctor to call, hence the title. Do I call my surgeon, oncologist, ob/gyn, GI doc, psychologist (joke), who is going to take care of this problem? And it always seems if I call one, they pun me off to another, "oh, I think you need to call so and so about that". Ugh, I am a nurse practitioner for goodness sakes and I can't figure it out. How do older people who aren't in the field figure this out, that's just it, they don't and they fall through the cracks!! I am telling you, this is a full time job, just taking care of myself, between all the phone calls, schedule, doctors appointments, bills (which Doug's dad helps us organize thankfully!!! Thank you Steve!) It is a full time job!!!!
Anyway, the pains are gone thankfully but I forgot to tell them I have been swollen for over a week on the left side of my abdomen. I am my own soap opera. That is why some of you read this, it is like a soap opera. Before all this, my life was plain and boring, now it is constantly something. It is actually embarrassing. anyway, but my dad took care of my mom all weekend, I think she is like me, I kept asking if I could help, she kept saying, no I am fine. Now I know where I get it, thanks mom!
On a very sad note, Friday my Uncle passed away from cancer. This is my father's brother who fought a long time with prostate cancer. I saw him in July during our family reunion at his farm. He was weak at that time and we all feared it was coming. The positive side is he is not suffering any longer and he is in a wonderful place. He is, once again, the strong, tough as nails, buffalo farmer I remember him as. Tomorrow is the service for him. I pray for the whole family, his dear wife, 3 children and his grandchildren as well as his brothers and sister who are all grieving immensely. You are all in my thoughts and prayers. He was an amazing man and is now home.
Good night everyone!

Super Dad

I am dragging today. I got my pump off but all day I have been out of it. I took a different kind of sleeping pill last night, and it made me so groggy when I woke up and I haven't gotten out of it all day. I am just really tired and this morning I had quite a bit of abdominal pain. I think it is just constipation, just a really good BM could solve all my problems, hehe.
I am so blessed to have Doug, who has come home from a long day at work to mow the back yard, while watching Ella (with the help of Ed and Libby, Doug's brother-in-law and niece), then he gave Ella a bath and now he is at the store. Isn't he wonderful! I am also so thankful to my mom who drops everything she is doing at a moments notice if I need her. Today, I took Ella to gymnastics but wasn't feeling well, as I described above, I called my mom and she met me there to help out with Ella. It is amazing what just an extra person there to help can do. I am so blessed to have them as well as the rest of my family. One of my friends, Angie, who just moved back from doing some travel nursing is coming to live with us for a few months. Ella absolutely loves "Gi Gi" who actually babysat Ella when I went back to work after maternity leave. I think it will be really good to have her here, for both of us, we can help her out and she can help us out. Anyway, I wanted to get something out before the weekend. I will be helping my mother out tomorrow. Thank you Krissy (Doug's sister) for watching Ella tomorrow so I can care for my mother. Please keep her in your prayers as well as Doug's Papa who just had surgery this week for tongue cancer. Lots going on, it is never a dull moment in my life anymore, it seems.
I hope the Jennifer Ireland Golf Tournament on Saturday is a huge success. I am hoping to go and volunteer but it all depends on how I am feeling. I need to lay low to save my energy, but this is a very hard task for me to sit and watch everyone else do everything. I don't like it one bit. I hope everyone enjoys their weekend. I guess enjoy the warmth while we have it, I am hoping it cools off after this! Good night everyone. Shawndra

Chemo... again

Hey all- I got my first round of chemo since I have been off for two months, I consider this starting over. I am doing well. I had a brief problem on Tuesday while they were infusing my chemo. I got lightheaded, dizzy and I felt like I was having a hard time talking, my tongue felt strange. They couldn't figure out what was going on, the only thing we came up with was that I hadn't eaten much that day. It did eventually go away and no other major problems. I got to rest some today since Ella was in daycare. That was much needed! I have been trying to clean out Ella's closet so I got that done for the most part too. Aren't I the go getter, hehe.
I also got in to see a pain specialist today. I was a bit concerned about the pain medication I was taking. I feel like I have built a tolerance and it takes more to get my pain under control. I am also very afraid of addiction, and don't want to feel like I am using it unnecessarily. Anyway, he reassured me I am not going to get addicted and that I was taking a small dose. He said I should increase my dose and take it before I get pain or as soon as I feel pain so I can remain comfortable and how I describe it "normal". Really that is how the pain medication helps me. When I take it the pain and discomfort all over my body but especially in my left lower back goes away. I just feel like I am normal and that I can actually function as normal. That was great to see him and get this confirmation and reassurance. I don't want to end up in rehab after the cancer goes away, ya know. Anyway, I still have my chemo pump, infuses continuously over 46 hours. I go to get it off tomorrow. Then I am free for another week and a half until I go back and do it all over again.
I got to meet Christy, a fellow cancer fighter who blogs and comments on mine from time to time. She seems to be battling a nasty infection, she had a horrible cough. Please keep her in your prayers as well as all the others fighting this nasty disease.
I am off to take my new sleeping pill and get some z's. I'v got to get my energy up to take care of Ella tomorrow and then help my mom who is having knee surgery friday. It is finally my chance to care for her! I need to feel like I am helping others, ya know, not just receiving all the time. Take care everyone! Talk to you soon. Good night. shawndra

I love MRI's

I had my MRI today, it was so much better than getting a CT. Besides the noise of the MRI machine, I didn't have to drink anything, I didn't have to not eat and I just could lay there with ear phones on, relax and nap. I have my first day back to chemo tomorrow. I should start getting the chemo around 10am. It will probably start later knowing them. I haven't dwelled on the thought of restarting chemo, but I might get nervous tomorrow before I go in. When I do think about it, of course I dread it a bit, especially because I am starting a new chemo and the "fear" of the unknown. I hope I don't have many side effects like the last time. I was pretty lucky last time with only minimal side effects. But I do want to get started so I can get it over with, especially with the potential of having surgery. Anyway, I would appreciate all of your prayers! I am so grateful to you all for sticking with me and keeping up your support. I will let you know how it goes. I am going to go have a bowl of captain crunch before I head to bed. I don't know how hungry I will be tomorrow morning. I am addicted to Captain Crunch!!!! so good. I used to be a fiber fool, now I avoid it like the plague. I hope you all have a great week. I will try to have Doug put up more pictures of Hawaii in the near future. Ella is so much fun, but full of energy. I believe she is getting into the terrible two's. She is quite independent always saying "mommy back" when I try to do something for her. She is still using the potty once in awhile and is bouncing all over our furniture. Wow, I wish I had her energy. But our family is doing well and will take this next round all in stride. The fighting gloves are back on. Ding.....

Omaha

I am back from Omaha! It was a worthwhile trip. Thanks again, Mom for going with me. My dad got up early this morning so he could be there for my procedure and for the meeting with Dr. Foster. Thank you dad for coming up for that! I love you both soooo much. Yesterday I just had to have my history and physical done, so another poke of the needle and then just the usual questions and stuff. This morning I got the IV, twice, often they have trouble getting it the first time. You would think with a port I wouldn't have to get so many IV's, but there are so many things they can't use the port for. Then they gave me some sedation, so I didn't remember anything. I wasn't completely asleep like I was Monday, but I was enough asleep that I didn't feel anything or remember anything, thank goodness. I have had a rectal exam without the sedation, and as you all can imagine, it is no fun. Of all places to have to be examined, ugh, it's the worst. I think I might get a tattoo saying exit only!!!! Not an entrance, something like that. Anyway, Dr. Foster did get a good look and spent a good hour talking to us about his thoughts. He did think that depending on how chemo went the next few months, meaning if my tumor markers go down and the chemo seems to be working, he may be able to go in surgically in a few months and take a look and possibly remove my omentum, do intraperitoneal chemo, etc. Keep in mind, this is all maybe's and depending on this and that, but hey, it is something so I felt really good about it! He is the first person to give us this answer. We did ask about recovery, because many have said it may be a very difficult surgery to recover from. He seemed to think that since I was young and otherwise healthy I would fair pretty well in the recovery process. It would probably be 7-14 days in the hospital again, but it sounds possible. There are many more things we discussed but that is the gist! I love Dr. Foster, he is great and I think my parents were impressed with him as well as Doug and I were. So this is good news. I just have to pray that this new chemo regimen is successful and reduces my tumor markers and hopefully the cancer in my body! I pray that the cancer does not spread to any other organs or any more in my abdomen. I feel though, that if this doesn't work this way, then it isn't meant to be. So, I am not getting my hopes set to high on this surgery, I don't want to be devastated if the tumor markers don't come down and then he can't do the surgery. I have to believe that it is all in God's hands and he will guide me the way it needs to go. Please keep praying though for me, we need to continue to inundate God with prayers. Continue to pray for this miracle that only he can do. My mom and I got to have dinner last night with my cousin, Les, who is a preacher in Omaha as well as his wife, who has battled breast cancer twice and their son, Blake. It was wonderful to get to talk to them, they know about what I am going through and they gave me so much encouragement and spiritual guidance. I again believe God played a part in this meeting! I better go, I had to take extra pain medication. I have been hurting more since my stent was replaced. I am getting a bit fuzzy in my head since I had to take more than usual. I think I need to go see a pain specialist that I saw after my surgery to maybe change my pain med regimen. I think I getting a tolerance to what I have been taking. I don't like taking anything, but I have to if I want to keep functioning and caring for Ella. Otherwise, all I would want to do is stay in bed.
Next step, MRI on Monday and chemo starts Tuesday. As much as I am dreading starting back up, after today, I am ready to get on with it and see how things go. have a great week everyone. Enjoy the great weather as much as possible. We don't get it very often, don't take advantage of it! Love you all! Shawndra

Stent

It is so good to be back to read all your comments on the blog and my email. I truly missed that! I hope you all had a good monday. It was actually cool this afternoon outside, wow! It felt good. I think I gained a few pounds on my trip, some things aren't fitting as well as they did. JJ, you keep opening your fridge, I will be closing mine. It is hard though because my neighbors made me the best banana and pumpkin bread and cookies for when we returned. They are trying to fatten me up. It is simply irresistible. Thank you all! I don't need anymore fattening though.

I had my procedure for my stent replacement this morning. I had a bit of a panic last night. I had forgotten to stop my Coumadin (blood thinner) a few days before the procedure and remembered about 10pm last night. It was too late, so I had to just get up at 5am and show up at 6am to see if they could still do the procedure. Thank you mom for getting up so early to go with me, she is the best mom as a lot of you know! But they were able to do the procedure, I got some "happy" medicine, weeee, next thing I know I was awake and had to go to the bathroom. The nurses gave me my clothes and sent me to the bathroom to go and put my clothes on. Looking back, that wasn't smart on the nurses part. I was a bit tipsy from the medication, I could have really gotten hurt but I did it. The doctor said he didn't see cancer anywhere near my bladder, so that prayer came true. Thank you Lord!!! No urostomy at this time, phew! I was in some pain this morning and took more than usual pain medication and slept all morning at my mom's house. Krissy watched Ella this morning, thanks Kris! She came back home early afternoon, but I could not keep my eyes open, I was still soooo tired. Thankfully Ella napped awhile as well! Phew. I got to see my friend, Angie, who is back from travel nursing. She has been gone 8 months and I have missed her. It is great having her back. Another friend, Dustin, just moved back recently too. I am so lucky! Gosh, the power I have, hehe. Anyway, I feel like I am rambling. I am leaving tomorrow for Creighton with my mom. I have an "exam under sedation" Wednesday morning with Dr. Foster. I will let you know what I find out when I get back. Have a great week everyone. It is so good to be back blogging again! strange how we have become so addicted to computers and email. shawndra

Hawaii!

Aloha everyone. Doug and I just returned from a week alone, together in Maui, Hawaii. I haven't read my email yet. I wanted to get something out to you all so you knew I was okay. I haven't checked my email or even been on the Internet in a week. I didn't want to tell you all ahead of time for security reasons! Let me tell you, it was very hard to not tell you all too! I am a person who can't hold anything inside without telling! Especially when I am excited! I hope you all are doing well, I really missed my huge support system. I know you are wondering what it was like so here it is......

It was INCREDIBLE, FANTASTIC, AMAZING! Doug and I had probably one of the best weeks of our lives. Here is the run down... we hung out on the beach (I decided I don't like sand, it gets everywhere, ugh, but I do love being near the ocean and seeing it and hearing it, not a big swimmer either, especially in the ocean). We took a snorkel/boat trip. It was great but the snorkeling sights weren't wonderful. We did, though, see a lot of dolphins swimming around our boat, that was very cool! We, I take that back, Doug played golf at a gorgeous course. I road along and enjoyed the view and the weather. We played tennis, ziplined, took a helicopter tour over parts of the island, and drove the long road to Hana. This was a true adventure week. We also got to relax a few days and sleep in. We stayed in a condo, thanks to Kris and Ed (Doug's sister and brother-in-law). It was really nice to have a kitchen so we cooked and ate in a lot which was really nice! We did go to dinner at the elite Four Seasons for the view of the sunset. It had great ambiance, but I probably wouldn't go again. It was a bit pricey but it was worth it once! Anyway, Doug and I had the times of our lives. We missed Ella a lot. She stayed with both sets of grandparents part of the week. I cried when we left KC, but quickly got over it and enjoyed myself. We talked to Ella on the phone every day. We were so excited to see her and Lexi today! We couldn't wait.

On the flight back to KC, we managed great seats too. They were the flight crew seats that pilots use to rest on the flight to Maui (since it is a long flight from the Dallas airport). We asked about them and told them if there was anything like that available on the flight home to KC, we would be grateful because I was undergoing chemo. The flight attendant was so nice and said on the way there they were reserved for staff but they would be open on the way back and that we should check on it. So I did! It was great, just like being in first class but not paying for it. I also got a comforter blanket, both to and from, usually only for first class members. That makes a huge difference, let me tell you!

Oh, Doug and I also renewed our vows, just by ourselves. We didn't find a priest or anything. Yesterday morning before we left we took one last walk along the beach. We stopped and turned to each other and said our own vows and expressed other thoughts. It was a fantastic ending to the week! We really needed this time to ourselves. Everyone should do this. It was like a second honeymoon. We really got to go back to when we first met and fell in love, just having fun, no worries or cares ( at least for a few moments).

Well that is all for now... back to reality...

Tomorrow, Monday, I have to be at the hospital early, 6AM, for my ureteral stent replacement. I am a bit scared, I have been having a bit of pain when I go to the bathroom at times. I am concerned he is going to tell me that the cancer is invading my bladder and I will have to get a urostomy, I am really scared about that. I don't want another ostomy. Yikes! Pleas Lord, I pray that the cancer does not invade my bladder but continues to shrink in my body and eventually will be gone from my body! I pray, Lord, that your plan for me is to perform a miracle and heal me and let me live many years so I can see my daughter grow up and be there for my family!

On Tuesday this week, I go back to Omaha, Nebraska, to see Dr. Foster. I have a history and phyiscal on tuesday so he can do an exam under anesthesia or atleast sedation on Wednesday,to see if there is any type of surgery he thinks he can do. Remember, all the other surgeons are saying no, and if there was a surgery, it would be very difficult to recover from. He is a bit more aggressive and may not think there is any surgery he can do, but he wants to take one more really good look (exam) when I am sedated so he can really make a good assessment as to if there is anything he can do, removing some of the cancer to prevent future side effects (such as effecting my bladder). I will also ask about my colostomy, if he thinks it's a possibility to reverse it. Again, everyone else has said no, not suggested at this time for fear of the cancer blocking me off again. Even Doug is leary of this, but I have to ask!

So, I have a busy week ahead. The following week I will have an MRI and start up the next regimen of chemo. Ahhhh, sigh. It was so nice to be away from all this for a whole week. It is tough getting back to my reality... that I have cancer and I am fighting for my life. I will continue to do what it takes. I want to live to take Ella to Maui and enjoy it over and over again. I am glad to be back though, reaching out to you all and sharing my life, and hearing from all of you who are supporting me and keeping me lifted up! Thank you.

Oh, Ella is awake, gotta run. I love being mommy! Talk to you all soon. I won't wait so long this time! Shawndra

P.S. Thank you to all my family and friends for the flowers waiting for us at our room in Hawaii as well as the food and flowers here at our house when we returned. Thank you to Nana, Grandpa, Grandma and Papa for taking such great care of Ella and Lexi. It appears there are some extra things that were done. change of flowers, maybe carpet cleaning, whoever did that, if it was done, thank you! I never thanked the person who left the anonymous angel on my doorstep on my birthday. Is anyone going to admit who it was? Thank you for my angel, I love it! Sorry it comes so late. Thank you Steve for mowing our lawn too! Again, we have the best neighbors, family and friends. We are truly blessed in every way. Thank You.