I'll never capitalize cancer

I have alot going on in my life, more than just cancer and chemo. Sure it's a big part of my life right now, but it's not the most important part of my life. You will never see me spell it with a capital "c".

I'm a Wife and Mom. I love my Family. I have good Friends. We do fun stuff and dumb stuff and sometimes we argue and then we laugh again. We go to work and to the grocery store and we go swimming and have birthday parties and get ready for the first day of school.

I keep saying that I don't want ovarian cancer to define me, but sometimes I just can't help it.

A good friend put it this way for me "cancer may be defining your life for the moment, but it is not your entire life. You seem to just make time for it." That made me feel better.

If you want to see it from the beginning, my cancer story begins in March.

The rest of my story is happening now.

Saturday, March 28, 2009

The Messenger

My Friend Kevin called me today. Kevin was on the way to the Fair and he just had to call to let me know that He is going to make sure that I get through this. Kevin told me that he's been praying for me, and this is the Message that he was supposed to deliver.

I've said it before and I'll say it over and over again, I am so thankful to have people around me who are not afraid to pray OUT LOUD.

Friday, March 27, 2009

Here's What Happened

If your looking for facts from the experts, here's some good reading about Ovarian Cancer

If you'd like to come along with me on my journey, I'll write you a little story.

I am having a tough time with this because if I take enough pain killers to sit for a while to post, I start to get sleepy - vicious cycle, but here goes.

I figured my first appointment at MD Anderson mostly would be full of paperwork, questions and moving from one diagnostic test to another. So I convinced everyone that I would be just fine going by myself. Brian and Abby need to keep home life as normal as possible, my cousins Kimmy and Jenny have told me over & over again that they are on stand by anytime I need them, Dad says he'll be on the next flight - just call, and so many other dear Friends and Family have told me that they will drop everything to be with me even if all I need is someone to hold my hand. But really, I can do this.

My appointment with Dr Kathleen Schmeler is at 830AM Mon, need to get there by 730AM to start the paperwork. A few days prior, I received my "Welcome Packet" in the mail. Kinda feels like what you get for Summer Camp - a map, driving directions, what to bring, important phone numbers, 8 pages of medical history to fill out. Seems that the women on Mom's side of the Family have some history of Breast Cancer and Colon Cancer.

Brian already had made plans for us to see Elmo & his Sesame Street friends Sunday afternoon, so we kept that date and took one of Abby's little friends along with us. Afterward I packed enough for a couple of days and headed to Kemah to stay with my good friend Brenda.

Monday morning she asked me again if I wanted her come along with me, but I assured her that "No, I'll be fine." Brenda's made this trip with friends a couple of times before, and helped me pack for the day - my paperwork, some snacks, water, cel phone, my laptop, the new MajikJak and phone that Brian got for me, a blanket and Brenda tossed in a pair of warm comfy socks for me, the ones with the rubber ridges on the bottom.

Traffic into Houston that early in the morning was easy, driving directions were excellent, I found entrance 7 and Valet parking is free on your first visit - convenient!

I have a little cart that I got from Office Depot, I just threw everything in there and followed my directions to the Laura Lee-Blanton Gynecologic Oncoloogy Center on the 6th floor.

So far so good. I'm pretty calm, just pulling along my little cart. Everyone from the Valet to Security and Informtion to Reception at the Gynecologic Oncology Center is smiling and friendly and helpful. I'm actually early, and for those of you who know me, that's pretty amazing.

I step up to the counter and turn in my paperwork, Kegan lets me know my Medical Record Number and hands me a clipboard with my Oncology team's names and important contact info, and a couple more pages to fill out.

The waiting room is very comfortable. Glider rockers, Recliners, Sofas, Club chairs - something for everyone. 1000 piece jigsaw puzzles laid out on the coffee tables, magazines, paperbacks, coping with cancer brochures, fliers on upcoming seminars for Patients and their Families, a huge aquarium, a bubbly waterfall sculpture, coffee, ice water, little cross stitch kits.

As I'm looking around I can't help but wonder why each of them is here. I overhear some conversations. One Family is from Cinncinnati, another from Witchita Falls. "This is your 2nd visit?" "We've been making the trip for just over a year now". I see a couple of Translators helping to fill out the clipboard pages.

Some Women already are wearing cute little hats and scarves ... and now it starts to feel surreal. It's like I'm in some kind of weird dream. Everyone is oddly cheerful. Talking about their trip, their hotel, some are just looking around at each other

My friend Sally found out a couple of months ago that she has Breast Cancer. She already has been doing her chemo. She said this would happen - the odd moment that I realize that I'm not the only one, poor little me is not so unique, there are at least 20 other Women just like me here, in this one waitng area - and it's just Monday morning - it's just one day, on one floor - tomorrow there will be more.

But they made me feel like I was the only one that mattered.

Wow, this is more than I had planned to write.

Later this weekend I'll post some more. I'll finish up Monday's visit, then do a quick run through of what happened when Brian came with me on Wednesday's visit. Time to take a couple more Hydrocodone and get some sleep. The next post, I'll explain why I need the pain killers.

Monday, March 23, 2009

My first appointment at MD Anderson Cancer Center

I want to write something, I just don't know what or how much.

The OCD part of me wants to write a perfect little story, but that perfection has me stifled. I think I will just enter my observations. Like how this is all so surreal. This place is HUGE. And everyone has a story. Like when you tell your Hurricane story - Where were you when the storm came in? Did you evacuate? Did you have any storm damage? We're all the same. No one really is unique, we all are trying to figure out if we have cancer and what are we going to do about it. But then again we are unique - different cancers different stages.

I'm drinking Barium again.

Now this is weird. I am here in the Imaging waiting room, and there are all these people sitting around sipping on their little bottles of Barium through a straw.

Telling their story - I'm from Ft Worth... We drove in from Cinncinnati... This is our third visit... I've been coming for 18 months... Breast... Kidney... Lungs... We love to travel, last month we went to Italy, I think it will be our last time.

Friday, March 20, 2009

The Story

I'm going to tell it like it is. I'm going to mention poo and my period and maybe a few other things, nothing horrible, I've said all of this out loud, even in a group, just be aware.

Thursday night, just before Mardi Gras, some friends had us over for a wonderful dinner. We had Brie & crackers, drank wine, Tara made a fantastic baked chicken in her dutch oven - it was fall off the bone juicy with carrots, onions and cute little fingerling potatoes. We had more wine a couple VO and 7's and of course finished off with a King cake.

You know that feeling you have, just after Thanksgiving dinner? All fat & happy, when your belly is full and all you want to do is take a nap & then have a big burp & a poo? Well, that's kinda the way I felt - only I never had the big burp or poo. For the next few days I was feeling kinda bloated and gassy and ... I'm pretty regular, something goes in, something comes out. So this was unusual.

My usual day I have a Meal Replacement Shake for breakfast, that has plenty of fiber and probiotics, but I added extra Fiber Drink and a couple Probiotic Restore to my day as well. I was thinking back to what I had learned about easing symptoms of IBS. I made sure to take plenty of OmegaPlex - fish oil should help things move along, Calcium and Magnesium for intestinal muscle function and ReHydrate.

I also went to the drugstore and got GasX, Colace, Senakot S, Tums ... it had been FOUR days and I was trying anything. My tummy was kinda swollen.

I went to San Antonio the last weekend of February. I had a one day booking, but I brought Abby with me and we made it a long weekend and stayed with my good friend Sally. I still was very bloated. Still hadn't had the "big poo". A couple of mornings there was a little bit, I was burping alot and I had diahrrea, but just not regular like I should be. I had to wear super control top panty hose to work.

I was glad to have the chance to visit with my friend Sally. She had just told me that she had been diagnosed with Breast Cancer and every couple of weeks she had to take her pills for chemotherapy. She talked to me about the whole ordeal. Her appointments, how she felt, what she was thinking.

Now, remember, at the time, I still thought I just had some GI issues. Sally talked to me about how she was coping, but it wasn't really sinking in for me. I love her as my friend and care deeply about what she must be going through, but I never really had known someone close to me who had been diagnosed with cancer, so I didn't have have a complete understanding.

Anyway we had a nice weekend, took the Riverboat Tour, then Abby & I drove home. San Antonio to Beaumont is about a 5 hour drive. But when you are uncomfortably bloated and on the lookout for clean facilities because you can't figure out if you're constipated or have diahrrea - it seems like forever. And here's a bonus, I started my period that morning.

We got home late Sunday night. Monday I was miserable and called all over town trying to get a doctor's appointment. Called a Gastroenterologist, they said I need a referral. Tried to get an appointment with a Gynecologist, but they are booked til April! And they can't do the referral anyway, I need to see my Primary Care Physician.

OK, now I have to admit something. During the 4 years that I have lived in Beaumont, I have not gotten a Primary Care Physician. I have had seen a Gynecologist for my annual exams, but I don't get sick. And since I am self employed, i have limited medical insurance, so I just never did it. Lesson learned.

Tuesday, I was really feeling bad. I called Brian and he came home to take me to the Emergency Room at Christus St Elizabeth.

It was still early afternoon, so the ER wasn't too crowded. We got into a room relatively quickly. The nurse talked to me about my symptoms, and asked "Have you tried a laxative?" Well of course I have, and maybe this ER trip is going to be just a really expensive enema, but I need to feel better!

I kept thinking about that show on Animal Planet, Emergency Vet, how someone's puppy is acting strangely and they bring him in and take X rays and find out that he's swallowed a sock. The Vet does surgery and everyone is fine - I am hoping that will be me. But when they took my X rays they were hazy because of excess fluid in my abdomen. The ER Doctor came in to announce this to me and told me that this was called ascites, which is caused by malnutrition, liver failure which could be due to cirrohsis, caused by blood transfusion, hepatitis, sharing needles during intravenous drug use, or cancer.

What?! That would be impossible. Oh no Ma'am, nothing's impossible.

So, here's some Lasix in your IV to help keep the fluid down and here's a prescription for Lasix, a diuretic and a potassium supplement. Be sure to follow up with your Doctor, thanks for stopping by.

Of course I didn't appreciate her bedside manner, but the ER Dr did freak me out enough to be sure to follow up with a personal Physician. Fortunately, one of the best in town had a 230 cancellation the next afternoon. He ordered up some blood tests and a CT scan. I fasted and got my blood tests the next morning. There were at least 7 different tests that were ordered, but a CA125 was not one of them. Google ascites, ovarian cancer will come up on the list. Why not include a test for cancer?

I couldn't get in for a scan for a week. Looking back, I don't know why I waited, I could have gotten a CT scan in Lake Charles, Mid County, Conroe ... hindsight.

Another week goes by, I just want to feel better. Finally, that next Thursday morning, I drank my Barium and went in for my CT scan. Friday morning I went in to discuss the report with my Doctor. That's when he told me that I have a cyst about the size of an orange near my right ovary. Am I understanding you? Should I start crying now? Yes, and there is nothing further that we can do for you here. You need a Gynecological Oncologist and there is not one in Beaumont.

Well, good thing I happen to know a Gynecological Oncologist.

Brian is the first person that I called when I left the Dr's office. The next person I called was Mike Wade at Advocare Corporate. He got in touch with one of the members of Advocare's Sci/Med Board, Dr Judith Smith - a Gynecological Oncologist at MD Anderson Cancer Center in Houston.

It's Friday afternoon, 10 days since my first ER visit, the one where they told me that I had liver failure, and I really am uncomfortable. I'm bloated to the size of 4 months pregnant, and it has happened over just a couple of weeks. So Brian takes me to Memorial Hermann ER to have the fluid drained off my abdomen.

I took my cel phone and my laptop with me. Dr Smith was in a meeting all afternoon, but left a message to get the appointment process started, and she would call me back. I was in the ER waiting room filling out a patient self referral form on
mdanderson.org. I followed up with a phone call and a wonderful facilitator completed everything for me and had a confirmed appointment for 830 AM Mon March 23. But that's over a week away.

When I got in to the little room to have the fluid "tapped", they drained about 2 liters of fluid - think really big soda bottle!

Of course I was anxious about my appointment at MD Anderson - a week away. But the ER Doctor got on the phone with Dr Smith, they discussed it and agreed that it would be OK to wait the week. The next day, Saturday, Dr Smith talked with me some more about my symptoms, the process, what to expect. I felt better about the wait. It was going to be OK. And I was able to prepare emotionally for the trip and discuss more with Brian and make arrangements for Abby during the day that I was gone.

Thursday, March 19, 2009

I have Cancer

Two months since my last post.

Well, I have been feeling pretty lousy lately, and Friday I found out why. I have a cyst about the size of a large orange near my right ovary, fibroids in my uterus and a panus of tissue near my colon and small bowel. None of these are supposed to be in there.

I'm sad, scared and angry.

Fortunately, I am just down the road from the best cancer treatment facility in the nation - MD Anderson at the UT Medical Center in Houston, TX. And thanks to some help from Advocare VP Mike Wade and Advocare Sci/Med Board member Dr Judith Smith, I have a better understanding of this disease, the treatment and possible outcome.

Should I put this personal information out there for anyone and everyone to read? Of course!

We all know to do our monthly Breast Self Exam, and what to do if we find a lump. But do you know the symptoms of Ovarian Cancer? Do you know what to do about it?

I think it is important that I share my story. Not for drama but for awareness.

My first appointment at MD Anderson is Monday morning.