Don't forget to brush (and floss) your teeth!

That may sound like a funny title, and you are probably saying to yourself, "Eww! Of course I remember to brush my teeth!"

The reason for my post is that while I was undergoing chemotherapy, and fighting for a life that was likely to be cut way too short, taking care of my teeth was the last thing on my mind. And, apparently, it also wasn't a concern of my doctors.

While I was going through chemo, my sister had braces. One day, about a year into my treatments, I was feeling pretty good, and I accompanied my mom and sister to her orthodontist appointment. That day, there was a visiting doctor in the office. A very nice man, who offered to take a look at my mouth while my sister was brushing her teeth. I remember him telling my mom and I that chemo causes dry mouth (this I knew very well!) and that because there was a lack of saliva, that bacteria could grow.

It's funny, because I remember this conversation very well now, but did not think too much of it during those days of treatment. There were days in those beginning months where I was so depressed that I had to be made to get up and take a shower. I really truly wish I had taken better care of my teeth and brushed every day, if not twice a day.

Anyway, over the last few years, I have had a lot of oral problems, mostly all stemming from side effects of chemo. I have had four root canals, and two were unsuccessful and lead to extractions of the teeth. Both of those happened before I was 30. I have found a dentist who is working with me to get my mouth back up to par. This includes having five teeth pulled, luckily, three of which are my wisdom teeth (the fourth one never came in), but that is still two more molars that I am losing.

I have been planning to write something like this for weeks now, but what actually made me sit down and write it is that the very woman who saved my life, my family nurse practitioner, is also fighting a battle that flossing her teeth might have prevented.

Laura suffered a stroke while driving last year. Over the past year she has made leaps and bounds towards her recovery, but in the last few weeks she developed an infection in her brain. It was recently discovered that the infection was quite possibly caused by gum disease. In a recent update, Laura asked her daughter to remind family and friends to floss their teeth! The doctors have given her antibiotics and they believe the infection will go away.

Back to my original topic. Take care of your mouth! There are so many health issues that can be avoided just by brushing and flossing daily.

For anyone currently going through chemotherapy, here is a link to Colgate's website, and information on chemotherapy and dental health. Here is another link for Livestrong that has information from the American Dental Association, National Cancer Institute and the Siteman Cancer Center.

CBS News Story

My mom sent me a link tonight to a CBS News story on Adolescents and Young Adults with cancer, and how this is a growing group of cancer patients. The story focused on two cancer patients who are in remission or cured, but who have issued stemming from their chemotherapy. Reading the article, I was reminded of what I went through, but it was when I watched the video that a wave a nausea and/or anger came over me.

When I was told I had cancer, before I had any biopsies done, or any diagnostic tests to try and pinpoint the cancer, I made it known that my biggest fear was that it was in my female parts and that I would have to have a hysterectomy. When I found out that it wasn't gynecological, my mind went to fighting whatever it was. At the time, before beginning any treatment, no one ever asked me about saving my eggs for the future. I was 22 years old, and I had every intention of beating cancer. I was also in a long-term, monogamous relationship.

I have blogged before about wanting kids and not knowing if that will ever happen for me. It seems irresponsible for my doctors, any of them, all of them, to not have this conversation with me. I know my prognosis was not good, and it only got worse once I started treatment; but here I am. I am 31 years old, married to a wonderful man, and I don't know if I will ever be able to have children of my own. And that sucks.

Here's to 2012 Being the Healthiest Yet

As I mentioned in an earlier post, I have struggled with my weight all my life. But that struggle is probably what saved my life. Many women would be horrified to share their actual weight with the world, but in this new era of reality TV (with Biggest Loser and Celebrity Fit Club being huge successes), more women are sharing. I am going to join their ranks, as a way to help myself keep losing weight.

First of all, I am doing this without the help of programs like Weight Watchers or Jenny Craig. The big reason, I love food, and I love to cook. I cannot imagine having prepackaged foods sent to my house weekly. What I am doing is cutting down on, and keeping track of, my calories. This past August, while visiting Orlando, I purchased a Fitbit Trainer. I was looking for a pedometer to keep track of the steps I took while walking around Walt Disney World and Universal Orlando. What I got was so much more. The Fitbit Trainer counts your steps, but also calculated distances, calories burned and keeps track of your sleep efficiency. That in itself is pretty cool, but what is truly awesome is the accompanying website http://www.fitbit.com/. The site lets you keep track of the foods you eat. There is a database of common foods, and you can add to the database if what you ate is not listed. You can also create meals, by adding the ingredients. Once I figured this all out, I cut my caloric intake down to 1600-1800 calories a day.

At my heaviest, I weighed 279 pounds. When I first heard this number, I was so disappointed in myself. Granted, in a lot of ways, I had no control of the weight I gained. When I was diagnosed with Hypomagnesemia (a condition where my body is low on magnesium, an essential electrolyte) in September of 2004, I was given daily magnesium infusions. The magnesium was administered in one liter of saline. As you know, saline is salt water. I do not know exactly how many liters of salt water I was given, but I gained so much weight, that in the spring of 2005 I asked my doctor if they could put the magnesium in a smaller amount of liquid. I really wish I had asked this question months earlier, as they were able to administer the dosage in 50 milliliters of dextrose, a sugar solution.

When I got married in May of 2007, I had lost about 15 pounds and was happier with myself. I think that came from the amount of walking I did around Las Vegas, while I was finishing my Bachelor's degree at UNLV. A few more years, and I had gotten down to 250 pounds, which made me feel better, as I was only 10 pounds heavier than what I was before I got sick. At the time, this was a number I could live with.

Today, I weigh 228 pounds. My goal weight (for now) is 200 pounds. My Fitbit website says that I should reach that goal by July of this year. That excites me, because my brother is getting married in October, and I look forward to rocking a great dress. It has been a while since I have looked forward to buying a dress (or any clothes for that matter). My sister will also be getting married in a little over a year, and that gives me an even bigger incentive to get my but in gear and get fit and HEALTHY.

November 2006, approximately 280 pounds

December 2011, approximately 230 pounds

What are some things that you do to keep off the weight, or live healthier after the chemo is done? For those of you still fighting the battle, do you think about what you will do once it is over, or is the focus on the here and now? What about for those who are just trying to live a healthier life? Any pointers, recipes, or just general support is greatly appreciated!

(NOTE: This is not an advertisement for Fitbit. I just love mine!)

Happy New Year!

I can't believe it has been almost a year since I have posted on this blog. Wow, I guess this can be seen as a good thing. It means I am putting my cancer diagnosis behind me, as best I can.

The last year has been a pretty good one. My most recent CT Scan came back clear, which is always good. I am still in remission. I still don't want to use the word "cured" as I don't really know if I will ever be considered cured.

I did have a scare last spring, that may or may not be related to my cancer diagnosis. I was having major lower right facial pains, which was diagnosed as trigeminal neuralgia, but in true Lonnie form, my symptoms were much different from the normal presentation. I won't bore you with all the details, but I will say that after many trips to a neurologist, an MRI, and 9 months of Gabapentin (greatest multi-use drug out there), I have not had any pains in close to 9 months.

This year I hope to finish telling my story (which includes taking time to scan pictures), or at least continue telling my story, as I plan to have a long and HEALTHY life. Now that I have graduated from grad school, I may actually have the time to do this.

Happy New Year to all, and best wishes for good health!

Happy New Year, Even Though it is Almost February

I know I haven't posted in a while. This is still somewhat hard for me. I have spent the last hour rereading through my posts, and I realize that there is still so much to write about. Part of the reason I have been holding off is because I want to be able to include pictures (and these pictures have to be scanned). For my family and friends they would probably rather not have to look at the pictures and see me that way again, but I really do think it helps tell the story.

Its funny, last Christmas my mom bought me this fuzzy white ski cap with a little turtle on the front. I think I must have had my hair up in a pony-tail, because when I tried the hat on, she got this look on her face. Then she said "okay, take it off." I guess in that very brief moment, she was taken back to when I was bald, and wore hats to keep my head warm. Its crazy to see that face of hers after all these years.

I understand how she feels, and that may be why she does not keep up with my blog postings, but that is okay. I know that my battle was just as hard on her as it was on me, for different reasons. Writing this blog is my way of coping and moving on. Someday I hope she is in a place where she can read it, laugh at the funny stories I recall, and maybe even help me remember the details I have forgotten.

Navigating Cancer

Thank you to Becky Walker at Navigating Cancer for including my blog on their Carcinoid Cancer Resources page!

Please take a moment to check out their website.

A Bittersweet Week

Last Thursday we found out that my husband's ex-wife lost her battle with cancer. This was a very hard blow for my step-kids, my step-son in particular. I cannot even imagine how difficult it would be to lose one of my parents at 23 years old. My husband, however, does know how it feels. Marshall lost his mom when he was only 19. I am very proud of my husband, and my step-son, as they both did, what I consider to be, the best job possible handling this death.

Pam (Marshall's ex) was diagnosed with breast cancer about 4 years ago, and underwent a double mastectomy 3 1/2 years ago. I learned today, from my oncologist here in Georgia (who was also Pam's doctor for the last year or so) that Pam never really made it into remission. Once they battled the breast cancer, it spread into her bones, and then later into her abdomin. There is a lot I could say about Pam, but what I will say is that I am so sorry she lost her battle and fight with cancer. She really was a character, and kept us all on our toes. She was taken way too early in her life. She was only 46 years old.

The bittersweetness of this week is that I found out that I am still in remission. Sunday night, after returning from Pam's funeral, I had to begin my prep for a CT scan on Monday morning. Considering that I have seen the alternative, I told my self I would drink my barium and not complain. Well, I really tried to complain less. And Monday morning, I drank the second bottle, and bit my tongue.

I am living proof that miracles happen, that it truly is mind over matter, that doctors do not call all of the shots, and that God is in control if we just surrender our cares unto Him.

I want to take this moment to say thank you again to all who have been a part of my journey from the beginning, those who joined me in the thick of it all, and those who are still beside me. Let us all pray that while my battle is won, the war is still unknown. Also, please say a prayer for those who have not been as lucky in their fight, and for the loved ones they have left behind.

October is my favorite month...BUT...

It is marred by a big pink ribbon.

You would think as a cancer survivor I would relish in all the pink this time of year. You'd be wrong.

Let me clarify on thing. I HATE CANCER. Breast, uterine, colon, testicular, skin, lung, you name a cancer, I HATE it. (And let me just say, I DO NOT use the word hate lightly.)

Come October 1st, I HATE PINK! It probably started in October of 2003. I was struggling with my own cancer battle, and I remember The View having special episodes each week, I think in connection with Ford's Warriors in Pink (this may have been 2004, can't really remember). You know, it is very easy as a cancer patient to become completely self absorbed (I know I did, and I am so sorry for those people who had to live with me back then, well, and now). I watched The View everyday, and every time that talked about breast cancer survivors it killed me. I was DYING too, I had CANCER too.

Honestly, a lot of this resentment probably started because my cancer did not (and still doesn't) have a name. My cancer was, and to this day is still, just CANCER. Sure, we can get technical, metastatic carcinoma of unknown primary, according to one oncologist, or diseminated malignant neoplasm, according to another. Both of these scientific diagnosises basically mean that cancer was attacking my body and it was everywhere. Where was the national campaign for that?

There are a lot of people out there that are sick of seeing pink ribbons everywhere, but would propably never say it out loud. I understand that you need a new toaster, so why not buy the pink one because a portion goes to breast cancer "awareness." I would have to say at this point the world is AWARE of breast cancer. How about making a donation to the American Cancer Society? It will probably be more than the toaster people are giving them anyway.

You know, if I were a marketing major, I would probably give Susan G Komen's sister mad props, but I am not a marketing major. I am a cancer survivor who gets choked up (and kind of pissed off) at the sight of a million pink ribbons.

Did you know that there are several cancer awareness months? January is Cervical Cancer Awareness month. March is National Colorectal Cancer Awareness month. April is Cancer Control month (???). May is National Melanoma/Skin Cancer Detection and Prevention month. September has several awarenesses: Gynecological Cancer Awareness month, Leukemia and Lymphoma Awareness month, Ovarian Cancer Awareness month, and Prostate Cancer Awareness month. And November is Lung Cancer Awareness month and National Pancreatic Cancer Awareness month? Were you aware of any of these months? I guess they need better publicists.

I would also like to say that I understand having a minimum donation for walks and runs; however, I find it difficult to understand the Susan G Komen for the Cure 3 Day having the minimum set at $2200, per person! If you are able to raise thousands of dollars for the charity, that is AWESOME, but being required to raise thousands to walk doesn't make since to me.

I hope that I have not offended anyone with the rant, which is exactly what it is: A RANT. My absolute favorite time of the year has been transformed from beautiful fall colors, to PINK.

Some links I found on anti-pink people like myslef, and OTHER cancers awareness:

National Cancer Awareness Calendar

Sarah Horton, Alive and Anti-Pink

Pink Proceeds, Where Does the Money Go?

Before You Buy Pink

Disney Accessible Travel Continued

I just returned from a great trip to Orlando. As you may have read, I posted blog from my friend Monique on accessible travel at the Magic Kingdom and Disney's Animal Kingdom. Monique blogs about Pompe Disease (which is a form of Muscular Dystrophy) and gives tips to make other Pompe sufferers lives a little easier. During my cancer battle, I also had issues with accessibility, as I was partially confined to a wheel chair.

My time in a wheel chair (and as a travel agent) makes me look at attractions in a different light. There are several rides at the Disney Parks that are fully wheelchair accessible. If you or a family member is looking to take a Disney vacation, but concerned about being able to ride the rides, you are in luck! Here is a short list of rides available:

Magic Kingdom

Aladin's Magic Carpet Ride
If you have an ECV you will need to transfer to a manual wheel chair, but the ride has special vehicles that accommodates the wheel chair.
Jungle Cruise
 An ECV or manual wheel chair can be accommodated on this ride in a special boat.

Disney's Hollywood Studios


Toy Story Mania
This ride also has a special car, and a side track, for wheel chairs. ECV owner's will have to transfer to a manual wheel chair.  
Back Lot Tour
This ride allows accommodation for ECVs and wheel chairs via a ramp.

Disney's Animal Kingdom

Kilimanjaro Safari 
Guests will need to transfer to a manual wheel chair, where they can access the ride vehicle via a ramp.
Wildlife Express Train
ECVs and manual wheel chairs can both be accommodated on this train that takes guests to Rafiki's Planet Watch.

Epcot

The Living Land Boat Ride
This attraction has a special boat where manual wheel chairs can roll right on board.
Mexico Pavilion Boat Ride
A new boat has been added where manual wheel chairs can be rolled right on board, no ramp needed.

While there are many more rides available to those who can transfer out of their wheel chairs, I wanted to bring light to those that guests can board in their wheel chair.  

Accessible Travel-Walt Disney World, Animal Kingdom

Here is another one of Monique's blogs on accessible travel at Walt Disney World, this time featuring Animal Kingdom.

Accessible Travel: Disney’s Animal Kingdom, Part 1

Being the newest park to join the Walt Disney World family, Animal Kingdom is incredibly accessible. This is NOT just a “wild animal park” – a common misconception. It is a beautiful park that mixes attractions, shows, unique dining, conservation, and of course real animals. This park is also the biggest of all of the Disney parks and it has ‘hidden’ hills. Which means a lot of walking, so if you don’t normally use a wheelchair, but do have trouble walking, you might want to consider renting one when you’re ready to tackle this park.

Pangani Forest Exploration Trail Animal Kingdom offers several “walk through” areas that showcase exotic plant and animal life and are completely accessible. These include the Oasis Exhibits, Discovery Island Trails, Camp Minnie-Mickey Greeting Trails (I guess those count even though the “animals” are Mickey and pals), Pangani Forest Exploration Trail, Maharajah Jungle Trek, and Cretaceous Trail. You can explore these areas at your own pace, and there are even benches to rest on along the way.

The first attraction you come across in Animal Kingdom is It’s Tough to be a Bug!, located inside the Tree of Life - AK’s icon in the center of Discovery Island. It’s Tough to be a Bug! is a cute and clever (but can be scary for little ones) 3-D show. Like most Disney theater shows it is completely accessible to wheelchairs. If you can transfer to one of the attraction seats, which are like benches, I would highly suggest you do so. A lot of the attraction sensory experience is built into the seating. If you cannot transfer, you will still be able to enjoy most of the presentation from your chair.

Camp Minnie-Mickey, as mentioned earlier, offers you the opportunity to meet and take photos with Mickey and his friends. You’ll also find the “Festival of the Lion King" here. Another completely accessible show. But like all shows, there is limited wheelchair seating within the theater so get there early especially on crowded days. If you arrive and they have run out of wheelchair seating you can try to use their seating which is made up of benches and risers. Ask to be seated in one of the front rows to avoid having to climb stairs.

Kilimanjaro Safaris is a must-see for any visitor! On this attraction you board a safari jeep and tour an African reserve. You’ll observe animals like lions, elephants, cheetahs, giraffes, hippos, and others wandering the reserve. It is not uncommon for the jeeps to have to stop while the animals cross the road – you can get up close and personal with these creatures. There is a special loading area for disabled guests. If you can transfer, you’ll leave your wheelchair and board the jeep. You have to be able to step up into the jeep and then rise out of a somewhat low and narrow seat at the end of the tour. If transferring is not an option for you – no problem! The jeeps in this loading area have a specially designed area for wheelchairs to roll right on. You have to transfer to a manual wheelchair, which Cast Members will have on hand for you to borrow. You then just roll right up the ramp, let the CMs secure your wheels, and you’re ready for your safari! Be sure to have your camera ready!

Not far from Kilimanjaro Safaris is the Wildlife Express Train which takes you to Rafiki’s Planet Watch, an area dedicated to the preservation and conservation of animals. Your wheelchair rolls right on the train, no muss, no fuss, no ramps! All areas of Rafikis’ Plant Watch are completely accessible. However, only manual wheelchairs are allowed in the Affection Section (think petting zoo). Probably so no one runs down any of the animals – hey, I’ve seen those of you who are new to scooters drive! Animals and people beware!

We’ll explore more Accessible Disney soon!