Background Information, From the Beginning

First and foremost, let me direct you to a couple of websites that may prove to be very helpful to you if you are here to research appendiceal cancers and to research cancer, in general. Then, if you’d like, you can come back to hear about my story…
http://www.caring4cancer.com/ – Scroll down to the bottom and click on “Basics.” Great general information about cancer treatment, diagnosis, what to expect, etc.
http://www.appendix-cancer.com/index.html - More specific information about the various types of appendiceal cancers written and organized by a nurse who had the worst kind possible. What an amazing person to have created this website for others.
http://www.mdanderson.org/ - One of the premier research hospitals and cancer centers in the USA.
~~~~~~~~~~~~~~~~~~~~~~~~~~
It’s really odd how life can make up your mind for you. My two kiddos are now both out of High School and in college. I’d been thinking for years that, once the kids were out and about, I would take on some solid volunteer work of some sort in order to find more ways to give back to the community and the world. I’ve done some fundraisers and have co-founded and helped to organize a volunteer organization for musicians, but wanted to do something really special for individual folks in need. I’ve found a way to give back, for sure, in writing this blog about appendiceal cancer, specifically about Goblet Cell Carcinoid Tumors. I hope that you will find it informative and perspective giving. I’m not a doctor nor a nurse. I have no experience with this sort of thing. However, by sharing my journey with you, maybe I can help you to know that you’re not alone in your struggle and, quite possibly, can assist you through parts of your journey by sharing my own experiences with you. (For instance, the necessity of being your own advocate.) But, I’m getting ahead of myself. I’ll go back a bit so that you have some background about myself, my husband and the whole situation.
Jeff, my husband, works for HP out of the Houston campus. I’m a 45 year old Realtor and professional musician with a BFA degree in Ceramic sculpture. We found out last year that Jeff could telecommute just as well as he could work from the office….better, even. This set the stage for our move to Austin. We bought a lot and waited for our chance. Once we’d had the youngest of our two kids in college for two semesters, my husband and I decided it was time to sell the family home in NW Houston and fulfill our goal of building our dream home on the shores of Lake Travis near Austin. We closed on the home May 24th, moved into a rental home in the NW part of town and started to get settled in with both of us working from home. About two weeks after the move, we drove back to Houston so that Jeff could get shoulder surgery to re-attach some tendons that he’d snapped in his left shoulder due to Aikido and Bamboo Flooring. (He’s doing better now!) Before his surgery, we bought a two man kayak and took it to Inks Lake to break it in with the kids and had a great time. Everything was on schedule and I began to research into which owner/builder organization is best qualified to help us build our new home.
On Friday, June 27th, I started having a few tummy pangs at about 11:00am. I took some Mylanta and waited for it to kick in so that I could do my aerobics. By 11:30, I was asking Jeff if he was feeling okay ‘cause the nausea was turning into pain. Nope, he’s good. In go some Tums. I figured I was coming down with a bug or had food poisoning (again) and went to lie down. From Noon to 2pm, I rolled in agony on our bed, trying in vain to find a position that would allow some alleviation from the extreme pain and nausea I was feeling. I finally went into his office at 2pm and told Jeff it was time to hit the ER at that new hospital that we’d passed on the way to Inks Lake a week or so before.
Funny/weird side story, here. When we’d first passed this hospital on our way to Inks Lake, I thought that it would be a perfect location in which to implement a nice charitable plan that I had to brighten a few patient’s days while they convalesced. I intended to bring a single rose bud to each room to be left with each patient in a tiny vase but was wondering how to go about gaining permission to do this. (A lady had brought a rose bud into my hospital room in Nov. of 2007 when I was suffering from a 6 day hospital stay mystery ailment and it REALLY made my day. She put it in a medicine cup and we placed it on my tray. Unbelievably sweet of her and it made me feel so good to think about people like that populating our planet. Yep, I vowed to be a copycat and do the same.) How to go about finding out more about the hospital, though? Enter acute appendicitis!!! What a helluva way to make your introductions but now I can hunt down nurse Kathleen if I need to know more.
Okay, back to the story. Long story short, they did the CT scan by 6pm and had called in the surgical team to operate on me by 8pm. Acute appendicitis, sayeth the radiologist. And, no, you can’t go home to shower and shave your legs before the surgery. I had to apologize for ruining the surgical team’s Friday evening, collectively, but they were all the most wonderful people, funny and joking around right back and very forgiving. (Most of the team made me wonder when doctors had gotten so YOUNG!! Felt a bit like the first time someone called me “Ma’am.” I couldn’t be getting THAT old, could I?) My surgeon, Dr. Nicole Basa, even gave me her own hair tie so that I’d be comfortable. An aside: This lady is so popular at Cedar Park Regional that I wouldn’t be surprised if she had a “Dr. Basa Fan Club!” there. Imagine an honest, kind-hearted and very intelligent Phoebe Cates with a scalpel and you have Dr. Basa. Right before going into surgery, I smacked my hands together and said, “That’s IT! Phoebe Cates! You look like Phoebe Cates!” Doc Basa got really red and said, “Oh, you’re embarrassing me!” You know, the last thing you want to do is to embarrass your scalpel wielding surgeon right before she cuts into you, so I was quick to jokingly apologize for the embarrassment, letting her know that it was meant as a compliment. The rest of the team, most of them male, agreed with me wholeheartedly, saying, “Oh, yeah!” and making quiet, yet silly woo-hoo noises. (Dr. Basa turns beet red again, poor thing. She’s got her mask on now but she’s not fooling anyone.) Lol….it’s fun to gig your surgeon right before she gigs you… =)
Anyway, all went well and, after a sleepless night, I was able to go home at about 2pm the next day. Laparoscopic procedures rock, they really do. Healing time is fantastic and they let you go home as soon as you’re able to walk up the hallway. I was doing laps around the hospital and helping the nurses repair the coffee machine, I was so ready to go home! It was quite surreal to sit down at my computer at home on Saturday afternoon, though. The only thing that made me sure that the whole thing had actually taken place was my sore belly, pain med dopiness and a little old lady shuffling funny walk. I sent out a warning email to a bunch of my friends about how appendicitis can manifest in different ways and that mine had been a general, all over pain instead of being pinpointed only where the appendix is. I didn’t run a fever, either, which is atypical. Told them to get ye to a hospital if they had ANY of the symptoms that lasted for over 2 hours. (Find these at: http://www.mayoclinic.com/health/appendicitis/DS00274/DSECTION=symptoms ) So, in the end, it was a 24-hour emergency appendectomy, whatta concept! Surreal experience #1. We set up an appointment for a follow up visit and I set about getting back to being able to exercise again or at least roll out of bed without hurting myself.
A few days later, Dr. Basa’s office called and asked if they could move my July 10th appointment to July 7th saying that Dr. Basa had to go out of town. No problem, I’m only working part time and have loads of flexibility. (I still don’t know if this was a ploy to get me in earlier without telling me about the beast over the phone, but it would make sense. The pathologist found the problem on the 30th of June and I’m sure got it over to Dr. Basa quickly.)
Monday, 7/7/08
Jeff went with me as it was a 4pm appointment on a Monday and he’d finished work early. I’m so glad he did. I felt great and praised Dr. Basa for a job well done. Felt nearly normal and told her about my fan club idea. Dr. Basa joined us in joking around and being goofy about the trippy acute appendicitis experience. I gave her a new package of hair ties in repayment for her loan. Smiles & laughter all around and then she got really serious. I SO wasn’t prepared. Any of you who’ve heard the news will know what I’m talking about when I say that, at first, the words don’t truly impact you. You hear them, but they don’t seem to make sense. You say, “Okay, she/he just told me that I had/have a malignant cancerous tumor in my body.” But, it doesn’t really sink in completely yet, does it? Few emotions hit me right away, just a slight sense of surprise, resignation and vague questions about a plan of attack. It felt like my brain was swimming in someone else’s conflicting emotions and questions, with someone in there asking, “Is this REAL?” Surreal experience #2. Here’s the scoop:
The pathologist report states that I have a very rare cancer, a T3 sized Goblet Cell Carcinoid Tumor that had taken over the appendix and thickened it until it got clogged at the base and threw a tantrum, mimicking acute appendicitis. (I’m glad that it did ‘cause I felt good enough to go home by 6pm and would’ve never known about the cancer but for the operation.) Dr. Basa had cut and stapled at the base but didn’t like the thickened, rubbery texture of the stapled area, so she took more of the right colon portion out and stapled that. Both tissue samples, the appendix and bit o’ colon, had tested positive and Dr. Basa recommended a Right Hemicolectomy which, essentially, removes about 1/3 of your colon so as to capture and remove any other possible cancerous cells. (No colostomy bag, thank goodness!) However, we cannot do this until the appendectomy staple site is healed, about 4 weeks from the 27th. The cancer had spread, also, to the fatty tissue on the exterior of the appendix, making the cancer a Stage II, at least. Further surgical removal of the right colon, ovaries and lymph nodes, plus blood test/urine markers, will reveal whether it goes to a higher stage or not. (For you who are just starting to research, here is an article that explains stages:http://www.caring4cancer.com/go/cancer/basics/what-is-a-cancer-stage.htm)
We discussed the necessity of removing the ovaries. This rare cancer, when it does metastasize, usually goes into a woman’s ovaries and/or peritoneum, which is the lining of the abdominal cavity. I asked a question that I pose to all Docs when a major decision needs to be made. I asked her what she would do in my position. (If it’s a male doctor, ask what they would do for their wife, mother or sister. You get a good, honest answer this way.) She said take ‘em out since I’m not going to have any more kiddos. However, she warned me that I will go slammin’ into menopause. Eeek, but if it’s necessary, let’s get ‘em out and put me on heavy drugs and a pacifier. Or, put Jeff on heavy drugs and a pacifier. Some combination of both would work well, I think.
I guess I detached a little for the next 10 hours while absorbing the reality of the situation. Jeff and I were pretty quiet that evening and spent a lot of time researching the beast online. I let my Mom and best friend, Salle, know about it, but really didn’t want to talk about it in depth just yet. Jeff and I were still pretty raw, emotionally. However, I rallied pretty quickly. I put on my imaginary boxing gloves, dipped them in cement and set about educating myself about the disease. The next day was all about business for me. I’m usually pretty optimistic about things and have faith that things will pan out the way that they are supposed to. Let’s go….I want this damned thing out!
Tuesday, July 8, 2008
On Monday, Jeff and I had run across the MD Anderson Cancer website and I had done the “Admit Yourself” worksheet on their site. (Don’t do this.) The site said that I could expect to hear from them within 24 hours. (DON’T BELIEVE THIS, they are UBER busy!) I waited until about 11am and couldn’t stand it anymore. So, I looked up and called MD Anderson’s main appointment line, where I was told that it usually takes about 3 business days for someone to get to the online admissions! Save time and call directly or, better yet, HAVE YOUR REFERRING DOCTOR call them for you. (By the way, Dr. Basa did not refer me to MD Anderson but I wanted to get their opinions as this is an extremely rare cancer. Now that I’ve researched more into it, I’m positive that I will want MD Anderson (Dr. Laura Lambert) to take my case and handle my care, in conjunction with my local oncologist, until we get to the chemo stage. Then, we can take it local. More on that later….)
Here’s the scoop at MD Anderson:
In order to even get an appointment over there, they must first have all your records and then, once that’s done, your records go into the “in” box for review. After your records have been reviewed, they can make an appointment, but this takes over a week, at least. I’d been told that I’d have to wait about 10 days for that appointment but felt okay about it because I needed the appendix site to heal before we could go back in for any reason. I was directed to the GI section of the cancer center, assigned to a woman whom I’ll call Mandy. Essentially, I’m at Mandy’s mercy when it comes to getting this appointment, so I listen very carefully and write down all the things that she tells me they need over there. I’m told to get them my records from Dr. Basa’s office, faxed to Mandy, and told to overnight my CT scans and pathology slides to two different addresses. The CT scans are to go directly to Mandy. Okay, I’m fully armed with information and I’m off to Dr. Basa’s and the hospital. Takes me all afternoon to have the records sent and to overnight the CT scans and slides myself via FedEx, (Over $50.00) but I’m pleased that I got it all done by 5pm. While waiting for my records at the hospital, I'm able to speak with a pathologist who worked at MD Anderson for 3 years. She said that it was like a machine and to just do what they said to do to get through the process of Dr. appts. and testing. However, and this is important, she stressed that everything was MY choice, EVERYTHING. Be your own advocate, this is your body and your life. She spent a ton of time with me talking about this particular beast and for that, I'm forever grateful. Lovely lady...angels come in many forms. Doofus that I am, I cannot remember her name but I think I'll always remember her words and smile. If you can swing it, go by the hospital and try to talk with your pathologist. The worst they can do is kick you out. =)
Mandy had said to call her early next week after my records are in so that we can proceed to the next step. Great, will do! Says she'll let me know when she has all the records. Good deal....
Wednesday, July 9, 2008
I don’t want to wait to talk to an oncologist….It’s just driving me nuts to not know what I’m doing. I call Dr. Basa’s office to talk with her and she calls me back herself with referrals to various docs. (Told you she was great!) At this point, I was still thinking that Dr. Basa could do the surgery laparoscopically. I make an appointment with Dr. Bala (No kidding, Basa/Bala…don’t confuse them! The “s” in Basa is for “Surgeon.”), Oncology Specialist, for Friday the 11th at 1:15pm. I’m so thrilled that they fit me in so quickly and I start to relax. I’m feeling blessed. I checked with FedEx and the records arrived this morning at 9am. Everythings’s ready - Mandy has all the records now. I’m waiting for her call.
Thursday, July 10, 2008
Still no word from Mandy so I call to leave her a voicemail that she should have all my records by now and could she please call me to let me know what to expect from here. Then, I’m off to spend a whole day with my little sister, Stephanie, exploring the ‘real’ Austin with her. (My mom had called her and told her the deal. Steph’s boss is a sweetie and he told her to take Thursday off to spend with me.) Anyway, we had a great time and she showed me around like a trooper. Nothing from Mandy all day.
Friday, July 11, 2008
I call Mandy and leave another voicemail, letting her know that she now has all the records as of Wednesday at 9am and asking that she give me a buzz to let me know what’s next. I decide not to eat breakfast ‘cause I want Sushi for lunch so I bite the bullet, going hungry, and Jeff and I leave to go see Dr. Bala, Oncologist of Round Rock, Texas. Nice lady and her nurse, Alice, is top notch. If you want great attention skills, these two ladies are tops. However, you will need to know that you may encounter a chemotherapy ward like we did. It was a little weird and a bit heartbreaking because the beds were all lined up, kind of like how you see military hospital setups in movies, but with less space in between the beds. Folks are reclined in the beds with IVs, books and magazines, in this long row, having poison dripped into their bloodstreams, but most of them looking none the worse for wear. I felt like I was intruding as we passed by on our way to the exam room, just skimming a peek here and there. Then, I locked eyes with another younger cancer patient lady who was about the same age as myself. I could read her mind because I was saying the same thing in my own head. “This person has cancer? She’s so young and looks so healthy.” We held each other’s eyes for as long as we could. Once in the room, Alice the nurse answered questions and soothed nerves. Then, Dr. Bala came in and started talking about Stage II cancer, Stage III cancer, what to expect, debulking with a hot chemo wash (OH. MY. GOD.), also known as MOAS (Mother of All Surgeries) and the chance that I’ll have to go through that over at MD Anderson. I may not, though. However, she says, expect to lose the right colon and ovaries, as Dr. Basa had said. Okay, got it, consider it gone. Dr. Bala explains that most scans will need to wait to be done at MD Anderson, though, because they’re picky about their tests and won’t accept scans from outside of their system. Okay, got that, too. Let’s get this show on the road.They take a urine sample and want to do blood work so as to assess where my markers are and she sets up an MRI for me for Tuesday. I’m REALLY happy that my stomach was empty and growling because the blood work must be done fasting in order to be valid. They tell me to come back on Monday to do the blood work. Ha-HA! I AM fasting, sez I! They’re all so shocked that I haven’t eaten yet ‘cause it’s about 3:30 by this time, but it’s true and I’m starving. They do the blood work and I won’t have to postpone the results, hooray for my weird dieting! As my blood is about to be taken, another younger lady is getting hers taken right across from me. Ordinarily, I don’t stare, but this lady and I do the ’lock eyes‘ thing, too, both of us staring at one another like we’re trying to see something inside each other. It’s really quite mentally baffling when you feel so healthy and they look so healthy. Done with blood work, I’m then sent home with a big urine container so that I can collect a whole 24 hours worth for their collection. The lab tech asks me if I want a hat and I tell him, “Is that all I get? What, no parade?” What’s he talking about, a hat? He chuckles and whips out a wide plastic doohickey that you collect da wee-wee in. Oh, right, I remember those from my last hospital visit. It’s far harder to pee in the little 2.5 inch opening of the big jug that they gave me, I’m sure, so I gladly accept the gift of the plastic hat. It’s very fashionable in some part of the world, I’m sure.
Please forgive the visuals. I’m not candy coating any of this. I want to give you the most realistic version of what you might expect when you go through the process yourself. Plastic hats and pee-pee are part of this process! I’m sure that it will get even more gross. Hope we can handle that, right?
The good news is that Jeff and I have finally found the best Sushi in NW Austin, a place called Yama. Oh-my-gosh good and not just because I was famished, either! Get the crunchy roll or the Rock and Roll….Yuuuuummmm!
No word from Mandy at MD Anderson. *sigh* That’s okay, she DID say to give her a call early next week, so I resign myself to be patient.
Saturday, July 12, 2008
Jeff and I go to Georgetown to talk with an owner/builder guy about their company and we end up having lunch at Romeo’s and visiting the Georgetown/Williamson County museum. It’s sooo quaint and the town square so cute that I almost forget about the cancer for awhile. Pooped out, we have an evening beer at a local pub and then head home.
Sunday, July 13, 2008
Surreal experience #3, coming up. Jeff and I are going in to Houston so that we can: 1. Break the news to our two kids, Andi and Alex, and 2. Take Jeff to his GP for a checkup and to his shoulder guy for an update on Monday. Our idiot dog, KC, is with us for the trip. Midway between Austin and Houston lies Giddings, Texas, a sleepy little town with false saloon fronts to the stores and old, quaint buildings with a town square just off the main highway. (They also play host to a place called Buck-ees, which is a convenience store with the cleanest bathrooms in 6 counties.) Hwy. 290 runs through the center, with two lanes going to Houston and two going toward Austin, a turn lane in between. We’re cruising along when I see a splotch of orange in the middle of the two lanes that lead to Houston, right on the white line. It’s a kitten! I yell, “Holy Crap, that’s a KITTEN in the road! Turn AROUND, Jeff!!!” He does a quick u-bee and, yep, it’s a terrified kitten, all hunkered down, about 8 weeks old. I jump out and stop traffic, grabbing a towel, and scoop up the baby. We took him to a parking lot off the beaten track so that I could examine him for injuries. He had no visible injuries, but wouldn’t stand for me, so I couldn’t tell if his hind legs were hurt or not. He just seemed terrified until I’d wrap him back in the towel. Then, he’d be fine, looking far less freaked out. Well, we used the Garmin GPS system to try to locate an emergency animal clinic but they were all closed on Sunday morning. So, we figured that we’d have to take the baby to the emergency animal clinic in Houston. Gotta stop by Buck-ees, though, ‘cause a girl’s gotta do what a girl’s gotta do and, well, their bathrooms ARE very nice.
Now, get this: I’m fixing some coffee at their coffee bar and notice one of the workers cleaning the Coke machines. Who knows, right? So, I ask her about animal clinics and explain the current kitten situation to her. She pointed at her co-worker and said, “You need to talk to HER!” Turns out that the other lady’s husband is the head of the department for animal control in Giddings, TX, and, No, they do NOT euthanize their animals in their shelters. Yes, they will take our baby and fix him up. Yes, I can bring him in and she’ll call her husband. One orange kitten in an orange towel, coming up! We leave the workers cooing over the little fluffball and I’m ecstatic.
In 15 minutes, we saved a kitten from becoming a road Frisbee and found it proper care and loving hearts. We got back on the road and just kinda looked at one another. Did THAT just happen? Seems like we’re having a LOT of those moments these days. I take the kitten adventure as a sign. Read what you want into it, but I think it’s just too coincidental to be accidental. I got a HUGE amount of joy out of saving him and I thank God for putting him in our path. I think we both really needed that. I know I did.
Sunday 13
To be completed later:
Kitten Adventure.
Telling the Kids.
Cleaning up Mom’s Place.
Mexican Food & Movies.
"The Oid" is the Beastie's New Wimpie Nickname