Saturday, December 11, 2010

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.

Thursday, December 9, 2010

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.

Thursday, October 14, 2010

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

Sunday, September 26, 2010

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.


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.  

Monday, September 13, 2010

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!

Wednesday, September 1, 2010

Accessible Traveling-Walt Disney World Magic Kingdom

I am getting ready to embark on another trip to Orlando, and so for this post I am going to share a friend's blog. Monique is my traveling buddy, and has exposed me to the great world of accessible travel. While I was wheel chair bound I did not try and get out and see the world, but it is possible.

 Monique is currently battling Pompei Disease (you can read her blog for all the details), and uses a scooter to get around. She has become an advocate for Pompei patients and writes a blog sharing her experience, giving a face to the disease, and she also shares tips for getting around. So far she has written two blogs on accessible travel at Walt Disney World, first the Magic Kingdom, and second Animal Kingdom.

I would like to take this opportunity to share her wisdom with other cancer patients, who can benefit from knowing how to get around these awesome parks in a wheel chair or motorized scooter.

Accessible Travel: Magic Kingdom, Main Street U.S.A.
I have stated a few times that I now try to focus on the things I CAN do rather than what I can’t. In that spirit, I would like to share with you my observations on one of my favorite subjects: travel. I will be dedicating some entries to accessible travel and will start with one of my favorite places: Walt Disney World. I would like to take you through the accessibility of each area of each park.

Accessible Disney

Walt Disney World has done a wonderful job with making their parks and resorts extremely accessible to guests with disabilities. The are always making improvements, and as the technology evolves, more and more attractions become accessible or “more” accessible.

Let’s start with the Magic Kingdom. This is written to assist everyone, but I will write it from the point of view of someone who needs to use a wheelchair. Those of you who are still able to walk, but have difficulty with stairs and getting up from a seated position will benefit from this to.

 If you drive to the Magic Kingdom and have a disabled parking placard, make sure it is displayed when you go through the toll both, as the next Cast Member you see will take notice and direct you to the “Medical Parking” area. Otherwise you’ll go with the masses to standard parking which may not give you a wide enough area to unload a wheelchair.
If you plan on renting a wheelchair, the disabled parking area should have courtesy wheelchairs available to take you from the parking area to Mickey’s Gift Station where you can pay for a rental wheelchair. You cannot take the courtesy wheelchair any further. You can also rent wheelchairs and ECVs (electric courtesy vehicles) in the park (available on a first come first serve basis – so get there early, especially for ECVs). Mickey’s Gift Station is located to the left of the ticket booths past the Kennel as you arrive from the parking area.

When you arrive at the Ticket and Transportation Center, you can choose to take either the Monorail or the Ferry Boat to the Magic Kingdom. Both are wheelchair accessible, but the ramp to the Monorail is a bit steep. So if you’re in a manual wheelchair you might want to choose the Ferry as that entry ramp is pretty level.

You’ll go through a Security check point with everyone else, so have your bags open to speed up this process. You can then proceed to the turnstile where a Cast Member will help you scan your ticket and then open a gate for you to pass through instead of the turnstile.

If you want to rent a wheelchair or ECV head to your right after you pass through the turnstiles and before you enter the breezeway under the train tracks.

Main Street USA

I would suggest heading to City Hall to obtain Guide Maps for Disabled Guests. This Guide includes information on which attractions you can take your chair on and which ones require you to transfer to a ride vehicle, as well as indicating where the parade viewing areas are for disabled guests. You can get guides for all the parks, not just the Magic Kingdom. Also request a Guest Assistance Card, especially if you are able to walk, but have difficulty climbing stairs or think you’ll need more time to get on and off ride vehicles. These cards ARE NOT a line pass. They simply let disabled guests use alternative loading areas for attractions – wider doorways, a side track, special wheelchair accessible vehicle, etc. Some attractions have stairs in the queue line and this cards allows you to bypass the stairs on rides like Big Thunder Railroad and Dinosaur over at Animal Kingdom. They are good for your entire visit. City Hall is located to the left of Town Square on Main Street.

All the shops and restaurants on Main Street are accessible. However, later in the day, when everyone is shopping the stores can get crowded and become hard to navigate. I would suggest doing your shopping earlier in the day or during one of the parades or popular meal times. Take advantage of Disney’s Package Express so you don’t have to carry your purchases around with you all day. If you are staying at a Disney resort your purchases will be delivered directly to your resort. Otherwise you can pick up your packages on your way out – this service is available throughout all the Disney Parks, not just Main Street.

Main Street Vehicles

None of the Main Street Vehicles can accommodate wheelchairs, but they do offer curbside loading and unloading and some guests may be able to transfer into a vehicle. The horse drawn carriage and the omnibus are probably the easiest. The omnibus even has room to store up to two manual wheelchairs onboard, if they fold up. Give it a try because you’ll never know unless you do!

The Walt Disney World Railroad: Main Street Train Station

The Walt Disney World Railroad is wheelchair accessible. If you are in an electric wheelchair or scooter you will have to transfer to a manual wheelchair – which they should have on hand for you to borrow for the ride. The train has stations in Frontierland and Toon Town, but if you have transferred to a manual wheelchair you’ll need to go roundtrip, of course, in order to return to your chair or scooter. The ramp is located to the right of the train station.

The end of Main Street brings you to the Hub located in front of Cinderella’s Castle and surrounded by the entrances to Adventureland, Liberty Square, and Tomorrowland.

We’ll explore more Accessible Disney soon.

Updated Posts

I have added pictures to previous posts. Check them out, I think it adds to the story.


I spent this past weekend going through old pictures ( I LOVE to scrapbook!), and came across a few that are interesting and alarming all at the same time. I have been meaning to add pictures to this blog, unfortunately a lot of them are not in a digital format. I do plan to scan them and add them to the appropriate blog postings. Here are some pictures that I do have in digital format that show how cancer affected a 22 year old woman.

This picture was taken in September 2002, on my first trip to see Marshall in GA, I was 21

This picture was taken at the Westin Peachtree Plaza in February 2003,
this was our Valentine's Day, before the Bon Jovi Concert

This was taken summer of 2003, I was at my lowest weight around this time
(80 pounds lighter than in September 02)

At around my heaviest weight, thanks to months of magneisum/saline infusions
November 2006

Still nowhere near where I want to be, but 30 pounds lighter than November 2006
Summer 2010

The theme of these pictures is weight, and that is because I have struggled with my weight my entire life. It's kind of ironic that being overweight probably saved my life. Not many people can survive losing 1/3 of their body weight, but I did. It's kind of sad, at my sickest, I was at my thinnest, and my mom and dad told me how GOOD I looked. In fact, those were their very words when they saw the picture I have posted from the summer of 2003. In their eyes I was thin, but they did not see a picture of a very sick person, because the steroids I was on gave me a nice plump face. If it was not for those steroids they would have seen sallow, sunken in cheeks and eyes. (It was probably their way of coping, by pretending, but I have to admit, it hurt.) No matter how "good" they thought I looked then, my body is not meant to be that size. Yes I enjoyed wearing mediums and size 10-12 jeans, but I was extremely uncomfortable in my skin. I remember getting ready to take a shower and I saw myself in the full length mirror. I did not recognize myself, and that terrified me. I felt like I was wasting away.

As I started to get better, the weight came back. I was wearing size 18 jeans again by the fall of 2004, and that was okay with me. I had been averaging a size 18 since I was in high school. Actually, if I had to pick my target size, I would want to be between a 14 and a 16, and I am working on that now. Unfortunately, once the doctors realized I had a magnesium deficiency I was being infused daily with saline. Salt waler. As I mentioned early, I gained A LOT of weight in those months after the hypomagnesemia diagnosis. Luckily we were able to change the infusion liquid to dextrose, but the damage had been done. I have lost over 30 pounds since I was at my heaviest, but there is still a long way to go.

The moral of this particular story is that sometimes there is a reason it is hard for a person to lose weight. Throughout my childhood I was overweight, but I was never unhealthy. I am big believer in everything happens for a reason, and being overweight saved my life.

PET Scans

In my last post, I touched on PET scans and may have made it sound like I preferred them over CT scans. There is some preference, and with today's technology, yes, I really would.

Let me start by explaining PET.

PET stands for Positron Emission Tomography (by the way, CT stands for Computed Tomography), and in my cancer assessment both were used together. According to
A PET scan demonstrates the biological function of the body before anatomical changes take place, while the CT scan provides information about the body's anatomy such as size, shape and location. By combining these two scanning technologies, a PET/CT scan enables physicians to more accurately diagnose and identify cancer, heart disease and brain disorders.
I began receiving PET scans in December of 2004, after I completed chemotherapy. The prep for the scan was similar to a CT scan, only slightly different. I was given 2 bottles of Barium to drink prior to the scan, and had a CT when I got to the doctor's office. New Mexico Oncology had their own radiology department, so I did not have to go to the hospital for the scan. Once the CT was finished, which ususally took about 5 minutes (with the PET scan, the CT did not need contrast, or the iodine injection). I was then taken to a small room with a recliner, and given the radioactive glucose injection. gives a good explaination for the injection:
The most common form of a PET scan begins with an injection of a glucose-based radiopharmaceutical (FDG), which travels through the body, eventually collecting in the organs and tissues targeted for examination. The patient lies flat on a bed/table that moves incrementally through the PET scanner. The scanner has cameras that detect the gamma rays emitted from the patient, and turns those into electrical signals, which are processed by a computer to generate the medical images. The bed/table moves a few inches again, and the process is repeated.  
This produces the digital images, which are assembled by the computer into a 3-D image of the patient's body. If an area is cancerous, the signals will be stronger there than in surrounding tissue, since more of the radiopharmaceutical (FDG) will be absorbed in those areas.

It takes about 45 minutes for the glucose to move through the blood stream. At this time I would have to relax and not move around. The reason for this is that muscle stimulation could cause the glucose to collect around the muscles, giving a false reading. Also, for this reason, I could not have carbohydrates prior to the scan. The sugars from the carbs would also cause a false reading.

Once the glucose had time to distriubte I was taken into the room with the machine and laid down on a table, similar to a CT scan. The machine however was much smaller, and longer than the CT machine. Kind of reminded me of a hacked up MRI, about 1/4 the length of the tube. As the description from says, the bed/table moves a few inches at a time. The machine at NM Oncology took about 2 hours and 15 minutes to complete. The lab tech would put the table all the way through so that the machine started taking pictures of my pelvis and finished with my head. The last 45 minutes of the scan were usually the worst for me, because I am claustrophobic, and the "tube" is not quite wide enough, and my shoulders would be scrunched. The final 20 minutes were generally when I would start to freak out, and I would have to try and calm myself down by counting the minutes. That is a good way to distract yourself. Sometimes I was able to fall asleep, but when my shoulder got pulled in, that mostly woke me up.

 This is similar to the machine used.

In my last post I mentioned that my final PET scan was done at Athens Regional Hospital on a newer machine. That PET scan took less than 30 minutes (for the actual scan) and did not include a seperate CT scan. I was told several times the NM Onocology had purchased a new PET machine, but they did not have the space for it. I know that the building has undergone extensive remodeling since I moved back to Georgia, so I am sure the new machine has been installed, for which I am greatful. Not for me, but for all of the other patients at NM Oncology who need the scans. Cancer is bad enough on its own, without having to suffer through the testing as well.

It's (Almost) That Time of Year Again!

While that title may sound upbeat, its more of a OH NO! type title. I had my quarterly visit with Dr. Thomas (my oncologist here in Athens) last Thursday. Everything is still looking really good, blood levels are normal, and my Magnesium level seems to slowly but surely be increasing! That reminds me that I need to call and find out the results, but in April it was 1.3!!! That is still low for a "normal" person, but that is excellent for me!

So, the August appointment is when I schedule my December CT scan. Now the CT scan in itself is no big deal. I don't have a problem being stuck with an IV (I would actually rather be stuck by needles than have my blood pressure taken, but I think I have said that before), and I am not allergic to the iodine. My issue (as I am sure it is MANY other's issue as well) is the Redi-CAT prep, otherwise known as Barium Sulfate.

Last Thursday I scheduled my scan, and the lovely healthcare professional went and got my "smoothies" as they are also known. I have just recently started drinking smoothies for breakfast, and let me tell you, Barium Sulfate is about as far from "smooth" as you can get. It does not taste good, it does not go down well, etc. Anyway, as I am reaching for the bag, knowing full and well that I have over 3 months before I have to taste the stuff, my stomach begins to turn.

Let me give you a glimpse into my adversion to Barium Sulfate. During my first hospitalization, I had to have several CT scans. The nurses brought me one of those paper hospital cups, you know what I am talking about, white waxy paper, with a turquoisey-blue and purpley-pink swirl? Anyway, it was my "smoothie." The nurse had been so thoughtful to pour it over ice, and give me a straw. Well, she thought she was being thoughtful. I have learned over the years to drink the stuff room temperature. When it is cold, it is thicker, and thicker liquid does not go down as fast.

Here is my pre-CT ritual: I generally schedule the scan for Monday morning, so Sunday night I pace back and forth, trying to gather the courage I need to drink this horrible concoction, when that doesn't work, I pray, asking for the strength to get it over with. I put the vile liquid to my lips, try and turn my brain off, and chug as much as possible. By the time I begin to choke and gag, I have generally gotten about 1/3 of the bottle down. I then drink some water to try and clear my pallete, and wait 20-30 minutes, and chug some more. I am pretty good about getting the bottle down in three chugs. Monday morning, the ritual reprises itself. Yes, I have to drink TWO bottles.

I have to say, now that I am only having the CT scan done once a year, it seems much harder to get myself to drink the stuff. It could be because I have an 11 month reprieve, where I can completely forget about the stuff. In the beginning I had CT scans ever 3-4 months, then when I went into remission, I was changed over to PET scans 3 times a year, then twice a year. The PET scan required a CT prior to it, and so that included the Barium prep. Starting in 2007, I began having all of my scans done here in Athens. My last PET scan was at Athens Regional, and they have this awesome new machine that can complete the CT scan WITH the PET scan, and DOES NOT require the Barium prep! I was so very excited when I learned of this. HOWEVER, for those of you who do not know what a PET scan is, radioactive glucose is given intravenously, and the glucose will attach itself to any cancer cells. It also gives a much closer look and can detect cancer cells that a CT alone wouldn't. Well, you have to imagine that at some point, injecting radioactive glucose can become a bigger health threat, so after having like 12 PET scans, both doctors agreed that it was safer to go back to just CT scans. Yippee.

Okay, I have explained the process, let me tell you about flavors. I really can't describe the taste, and all I can say is if you have not had the opportunity, DON'T. You really aren't missing out on anything (and your life is probably better off never needing a CT scan). Okay, in Albuquerque I was usually given banana flavor. I have heard from others that banana is the worst, but let me just say, I was able to get it down. However, artificial banana flavoring and scent has FOREVER been ruined for me. My sister had banana lip gloss, made me want to puke. My step-son bought "banana" flavored pudding, I couldn't even be near it without feeling queasy. Now you may say why would I want the banana flavored one if smelling artificial banana makes me sick? Why would I want to ruin another taste or smell?  Here in Athens I am usually given berry flavor. They don't have banana, I have asked. Luckily, the berry tastes nothing like real berries, and I have not found myself being sick smelling strawberry lip gloss.

Oh! I do have to say, I found something worse than Barium! During last year's CT, I showed up at the hospital knowing I was going to have to drink approximately ANOTHER half bottle, becuase for some reason TWO bottles is not enough and they want the stuff SITTING in your stomach. Well, the radiology tech handed me a cup, and it was full of a bright pink concoction. My initial though was YES!!!! The tech said this was a newer suspension and they could mix it onsite. I took a drink, thinking okay, this is thinner, fruity, but not sickeningly sweet, and UUUUGGGGHHHH! Oh my gosh, it's BITTER! It really was worse than Barium, if that is even possible.

So, while the CT scan isn't scheduled until December 6, just thinking about having to drink the two bottles is making me sick, and I have a feeling I won't be finishing my breakfast smoothie this morning.

Wednesday, August 18, 2010

An Interesting Comparison

I just finished my summer school class, and I really can't seem to see how this was a "summer" class. It was 12 weeks, same as all my other 3 credit classes. While I am very happy to be done with this class, it reminds me of my trek through the world of cancer treatments. Well, sort of. Getting my Master's degree is a bit different from going through chemotherapy, but there are a lot more similarities that I would have ever thought.

First off, grad school gives me headaches. Staring at the computer, reading documents written by smarty pants that use words I have never heard, having to write documents with words I hadn't heard of, and working with people who don't necessarily see eye to eye. That has been my grad school experience so far, full of headaches.

Chemo made more than my head hurt. It made my body sore, and nauseated. Sometimes I had to listen to doctors use words I had never heard, but at least they were nice enough to explain in lay-man's terms. Chemo rendered me useless for days afterwards, but that very first day after, I had A LOT of energy. Chemo could make me very cranky (but I still reserve that right, I was dealing with cancer!).

Grad school makes me cranky. Problem with this one is, there are a whole lot of people who are going through the same thing I am, and maybe not complaining as much. :) Or there are even more people who have already been through what I have, but had it a lot worse. So, while reading, writing, listening, and working with people makes me cranky, I have to remind myself to suck it up, there is an end in sight.

We used to joke that we could see that light at the end of my chemo tunnel, and we just hoped that it wasn't the train! I honestly couldn't tell you the exact number of treatments I had, the number of shots (that one I could guess), the amount of CT scans (or AWFUL Barium I had to drink), or blood transfusions I endured as a cancer patient. But there is a key word there, ENDURED. That means I survived. If I could survive a year and a half of chemo, losing my hair, being away from the man I love, why I am complaining about grad school? Oh yeah, it's what I do!

A friend gave me a book for my 20th birthday, "Don't Sweat the Small Stuff, and Its All Small Stuff." That is me, I worry  (and complain) about the small stuff, while the big stuff, like cancer, doesn't phase me. I did what I had to do to survive. That's who I am. It's kind of funny, as I started this post, this wasn't where I was going at all. I love that I am learning more and more about myself, by putting myself out there and sharing.

Okay, 21 credits (I hope) down, 19 more to go! May 15, 2011 will be here before I know it, and then I will just have to find some other project to annoy myself with, that reminds me what truly is important life. I am doing this to better myself.

So, while grad school gives me headaches, it has also exposed me to people and knowledge that I did not know or have. It has opened up my mind to world I thought I knew, given me opportunities to expand my horizons, figure out what I want to do with this one life I have. And I have to say, last August when I began this journey, I really wasn't sure what I wanted to do. I'm not saying I have figured out what I want to be when I "grow up," but there is a clearer path ahead of me, with different forks and options. I look forward to this journey, and wonder just where it will take me.

Saturday, August 14, 2010

You Find Out Who Your Friends Are

I have to say, loved ones came out of the wood work when I was daignosed with cancer. I always had a lot of friends, from all different walks of life. I was not necessarily popular, but I wasn't unpopular either. I belonged to the Math and Science club, the Industrial Arts club, National Honor Society and student government. I was well-rounded for sure. While I knew most everyone I went to school with, and was friends with most of them. I also only had a few very close friends. I had several different best friends in high school, and then there were the "closest" friends from each of my different categories.

After high school, I lost touch with most of them, for one silly reason or another. I really learned what true friendship was when I joined a sorority as a Freshman at UNLV. Of course, the sorority offered the "fake" and "superficial" friendships as well, but there are a handful of my sisters that, to this day, are my closest friends. I unfortunately do not see or speak with them all that often, but I know they are there. I am here for them when they need me, and they were there for me when I needed them.

I have to say that when I met my best friend, I knew we would be friends forever, but I never could have imagined just how close we would become. Monique is my sorority little sister (or lil sis), but is a few years older. We met when she went through recruitment, when we were both sophomores at UNLV. She is smart, funny, knows how to get me into and out of trouble. I actually followed her to England our Junior year, which (in a story of its own) was one of the best and not necessarily worst, experiences of my life. I learned so much about myself during that six months abroad.

Anyway, I digress. After I was diagnosed Monique, Susan (another sorority sister), and Tony (another study abroad student we met from Idaho) drove to see me in New Mexico. Any true friend would come to see me, you might be saying, but let me tell you about their trip. Vegas is about a nine hour trip from where I was living. Also, like I said, Tony was from Idaho. He drove the (I'm guessing) 15 hour drive from Idaho, to Las Vegas to pick up Monique and Susan, so they could all drive together. Also, Susan doesn't drive. At all. So he picks them up and they had south (to then go west). There is a strip of road from Las Vegas to Kingman, AZ, of about 100 miles or more, nothing once you've crossed the Hoover Dam. Along this stretch, they came across a body in the road. I will have to ask them to remind me if the guy was dead or not. To make a long story short, they stopped and waited for police (and an ambulance?) to come remove the body. This was during the day, in June, in the desert. They really are great people.

Once they made it to Los Lunas, we met at Chili's for dinner, and they regaled me with this story while waiting for Marshall to get in from Atlanta. He finally showed up, I made the introductions, and we had a great time. That night, back at Mom and Dad's we hung out, and I got a very special surprise from my two sorority sisters. I received my Alumnae badge (which I later found out was actually Susan's) and a candle pass for my engagement. Since all sororities have some sort of ceremony for engagements and the such, I think it is okay to mention that I had one, but that is as far as I will go into details. Sorry. :)

Monique, Susan, and Tony met up with Mom, Marshall and I at chemo the next day, and they stopped and bought pizza for lunch! We all hung out in my private room, and then when I started to get sleepy, I suggested that they go check out Old Town. I think they enjoyed themselves. The next morning, we all met up at the Village Inn to have breakfast before they had to be back on the road. I was so sorry to see them go, but very excited that they had come to see me.

A couple weeks later I was blessed with yet a second troupe from Las Vegas. Crystal and Danielle, two of the sorority sisters I mentioned as closest friends, flew in to spend the weekend with me. Unfortunately, this time I was not feeling as good, and we spent most of the weekend at my parents watching movies. One night we did venture out to Blockbluster, to pick up DVDs and something to eat. While Crystal and Danielle's trip was no where near as eventful as Monuique, Susan, and Tony's trip, it meant the world to me that they were willing to just hang out with me.

Two friends from high school, that I was sure I had burned bridges with also came to see me at my parents. Anita and Irene were friends from my "smarty" side. We were in honors classes together, and Anita and I were in student government together as well. We were the type of friends in high school that were always feuding. If one of us did something, they other two wouldn't speak to them. Typical high school girl drama. Unfortunately, up to that point, had never made it past the drama. It also meant the world to me that they came to see me. While we just hung out and talked, I knew that we had put the past behind us. I would also like to add these two amazing women to the list of people I still call friends. We were able to keep in touch through Facebook and Myspace, and even reconnected back in New Mexico while I was home.

I do have to say that MANY more people were in and out of my hospital rooms, and came to my parents house, but it really was these people that I mentioned, that reminded me what I was fighting for. Thank you all so much!

Friday, August 13, 2010

2nd Hospital Trip, Part 2

Okay, so I was in the hospital for the 2nd time, yet again having doctors and nurses on the floor murmuring about "the patient who was up and talking with a BP of 40/12." Well, I don't know that for sure, but I am thinking that is what was going on outside my door.

***WARNING*** This post is not pretty. I try not to be graphic, but your mind will go there, so I appologize in advance.

While my blood pressure to finally got back to normal, I still had a fever, and had diarrhea. Now for any normal person, this could be uncomfortable and embarrassing. Add in a 22 year old female who didn't have the strength or agility to get out of bed quickly. This part of my hospital stay is the worst, and one of the main reasons I have not wanted to write or talk about my experiences. While nothing is embarrassing to doctors and nurses who have seen it all, there are some things that normal people just don't think about. It's not so much what happened to me (as you can all guess) because I am sure that everyone has had their own issues at one point in their life. My humiliation comes from the nurses idea to combat my problem. Adult diapers. There is nothing dignified about having to wear a diaper when you are 22 years old. Not that there is anything dignified about cancer, but up to that point, I thought I still had a shred of my dignity.

To add insult to injury, I still could not lift myself off the toilet. Every time I got up to go to the bathroom, a nurse had to be called in to, literally, pick me up. I really wish I had kept a better journal back then, or had a better memory, because the only nurse who's name I remember is Robby. (If you've ever watched Scrubs, Robby looked a lot like a younger version of the guy who played the janitor, he also plays the dad on The Middle now, too.) There were also two female night nurses, one big and strong, another little and strong, that were very helpful during that time.

A secondary horror to the diarrhea, was the shot injection they gave me to help combat it. Within minutes of getting the shot, I would puke bile. No matter if I had just eaten or not, it was BILE. Burned my throat, so very gross, bile. (Sorry to be explicit here.) After a few days of this I asked Dr. Guidice if I could PLEASE just take the Immodium pills. Luckily he said yes. (I should probably find out what that shot was, as I am apparently allergic to it.)

Along with the shot for diarrhea, I was also given Lovenox shots, to keep me from getting blood clots. My mom is very familiar with this shot as several times she had to have it 40 days in a row. She says that the injection has a square tip, and I would have to agree, as the stick is quite painful. Worse than the stick is the black bruises it leaves behind. Oh well, I never had a blood clot, so I should be thankful that the shot did its job.

Speaking of all the medications I was given, at this point, I was on A LOT of pills. In fact, if I did not become a drug addict while I was a chemo patient, I don't think I ever could (or would) become one. For pain, I had been taking Percocet, 2 pills, 4 times a day. Considering I already had a tumor on my liver, the doctors did not want me continuing to kill it, by taking that much Percocet, so they put me on Duragesic patches. This is medicine (Fentanyl to be exact) applied and absorbed directly through the skin. The patch was to be worn for 72 hours and then changed out. They started me on a dose of 400mg, or (2) 200mg patches, and slowly weaned me off the Percocet. The Duragesic patches worked pretty good for pain management; however, I have a Latex allergy, and the patches are plastic, so I started breaking out around the edges of the patch. You could actually see an outline of the patch because it had cut into my skin. This meant that I had to rotate the areas where we applied it. My back, my chest, my arms, the patch got old quickly, but it worked.

For entertainment while hospitalized, the nursing staff brought me in a TV with VCR, and my mom so lovingly found all my favorite VHS tapes. (Wow, that sounds so archaric now.) She also bought me Harry Potter and the Sorceror's Stone, I was so excited! I love Harry Potter! Anyway, I spent my time watching movies, and hanging out with as many people as would come see me. As bad off as I was at this time, I thought my spirits were pretty high. This was also the hospitalization where  I got my Look Good...Feel Better make-over.

I found out a long time later from Marshall that this particular hospitalization scared everyone, and Dr. Guidice even told Marshall that my prognosis had gotten worse, and he then thought I had 2 months at the MOST. Boy am I glad I didn't know that at the time! There was a time when I considered giving up, but that was not at this point.

I do have to say that putting this certain aspect of my treatment down on "paper" was difficult, but not nearly as hard as I thought it would be. Now I can move on, and finish telling my story. And while there are other aspects of my treatment that were hard for me to deal with (like losing my hair), none were as humbling and humiliating as this.

Thursday, August 5, 2010

2nd Hospital Trip, Part 1

Okay, today I start the hardest blog for me to write, just because a lot of the most horrible things happened to me during this second hospitalization. I am going to break the story up into at least 2, maybe even 3, posts.

After my first chemo, I did okay. The doctors told us what to look for, but we really had no idea what to expect. Marshall had to fly back to Atlanta on Sunday, and I was starting to fade. By Wednesday I had a fever that would just not break. I remember getting up in the middle of the night to go to the bathroom, and sometimes it would take me a while. Sometimes, I just did not even have the energy. One morning, not even sure of the time, it could have been the middle of the night, actually, I needed to get up, but just couldn't muster myself to get up. For some reason, and not really sure where the strength came from, but I stuck my leg in the air, hoping that someone would see me.

Not sure how long I laid there like that, but Mom came in and said Montana came to get her. (Montana is my brother's dog, he looks like a blue heeler, but is about 3-4 times bigger than a normal one, and became my saving grace many times.) I told mom I needed to go to the bathroom, so she helped me put my leg down, and stand up. Once in the bathroom, I could not get myself up, again. As I was sitting there, waiting for my mom to get my dad to help her, my legs (both of them) started falling asleep, then the worst thing possible happened. I got calf cramps in both of my legs. Normally when this happens, I put all my weight on my foot, in order to stretch the muscle. My position on the toilet did not allow for this. Not exactly sure when mom called the paramedics, but I think between her and dad being unable to help me up, and the fever that still hadn't broke, she was told to call them, probably by the on-call oncologist.

So, I am sitting on the toilet, calves still cramped up, when 2 paramedics come in and pull me off the toilet. They help me into the dining room, where I sit down, and dad gives me my daily meds. They check my vitals, bring in a gurney, and then I am loaded up and heading to Presbyterian hospital, yet again.  One of the medics tried like 3 or 4 times to start an IV on me in the ambulance, but no dice. (I can still show you the scar on the back of my right hand from one of the places he tried to stick.)

Get to the hospital, wheeled into the ER, and they start to transfer me to a bed. Someone (mom?) says, NO, she is supposed to go straight up to the 5th floor (Oncology), and so they stop trying to move me, and I am taken straight upstairs. Once I am situated in a room (which basically means, in bed, with an automatic blood pressure cuff attached) is when the fun begins. The auto-cuff is reading that my BP is 40/12. WHAT? Well, that can't be right, so they bring in another machine, still 40/12. They call in another nurse, and both begin to check my BP manually. 40/12. Mind you, I am wide awake at this time, and bitching and moaning that I HATE having my blood pressure taken, couldn't they just draw blood instead, mom, this hurts, make them stop! So the nurses are completely perplexed, because, yes, my BP is 40/12, and I am wide awake and talking. Apparently, most people with a blood pressure that low would be in a coma. Well, from that point on, I had 2 automatic cuffs hooked up to me, set to check my BP every 15 minutes, as well as 2 nurses coming in to check my BP in between the times that the auto cuff is set to go off. Did I mention I HATE having my blood pressure taken?

This is another time that my mom says of course I was talking, I had to tell them what was wrong with me, and I couldn't do that if I was in a coma.

Blood pressure finally stabilized, my theory is that I had already taken the little blue blood pressure pill, and my dad accidentally gave me a second one with my morning pills.

Tuesday, August 3, 2010

Funny Story 2

Since I have written about my first chemo treatment this week, I guess it is the appropriate time to tell my second funny story, about what happened after my first chemo.

As I have said before, I went through chemo at New Mexico Oncology and Hematology Consultants (now the New Mexico Cancer Center), which is located about 30 miles north of Los Chavez, NM, where my parents live. As I said before, Marshall came in that weekend for my first chemo, and rented an SUV to get around. We learned quickly that I could not get in and out of lower vehicles, due to my increasing weakness in arms and legs.

After 6 hours of being infused, and multiple trips to the bathroom, I was pretty zonked out. Marshall drove mom and I in that morning, and was driving us home that late afternoon. I was sitting in the front seat, mom in the back, probably listening to the radio, and letting all that we had been through soak in. We had gotten south of Albuquerque on Interstate-25, north of Los Lunas. All of a sudden, from out of nowhere, this tire comes flying off the road, rolls up the hood of the car, rolls over the side, and takes out the passenger side view mirror! All the while Marshall is driving probably 80 miles an hour (the speed limit there is 75). Talk about waking you up!

We all composed ourselves (still while Marshall was driving) and headed down the road. I'm surprised I seriously didn't have a heart attack! We made it home safely, but unfortunately, the rental cars side view mirror was toast. Cracked glass, kind of tilted to the side in an unnatural manor. If my first chemo wasn't memorable enough, we will never forget that day.

Damage to side view mirror from "flying" tire

We now have a running joke when driving south on I-25: "Watch out for flying tires!"

The BEST Medicine I've Found!

I remember back in July of 2003, I was taken off of certain medications, and told that I could drink alcohol again. Marshall and I had found a winery in Gatlinburg, TN called Smoky Mountain Winery, and fell in LOVE. They have about 20 types of wine, most made with muscadine grapes. Turns out these muscadine grapes are CHOCK FULL of antioxidants! I don't really believe in coincidences (I'm an "everything happens for a reason" kind of girl), so I attribute a lot of my survival on this wine. Around the time I began drinking it, my tumors started to get a lot smaller. First the lung tumors went away, and the tumor in the liver began to shrink.
I, along with my family, believe that chemo, prayer, and muscadine wine saved my life. I have found that MANY vineyards in the southeast grow muscadine grapes, however, a lot of this wine is very syrupy. I prefer a slightly sweet wine over dry, however, I prefer my wine very crisp. If you find yourself in Gatlinburg, the Smoky Mountain Winery is in Winerry Square, west of the Parkway, after 441/321 split. (We have also tried Apple Barn Winery and Mountain Valley Winery in nearby Sevierville and Pigeon Forge, TN and Chateau Elan, outside Atlanta, but they all fell into the syrupy category.) Duplin Winery in North Carolina was the first winery I found that would ship to New Mexico, and had decent wine, but now we stock up in Gatlinburg. My mom is even drinking it now to help with her blood disorder.
I personally love the Mountain Red and Mountain White, but also buy the Brookside White for cooking, as it is drier than the Mountain versions. And if you really prefer the sweet, but not necessarily dessert wines, the Muscadine White and Muscadine Red are really good too. :)

Monday, August 2, 2010

Stand Up 2 Cancer!

Stand Up 2 Cancer was hugely successful in 2008, and they are doing it again, September 10, 2010!

How many other times in life can you remember the three major networks, ABC, NBC and CBS, simulcasting, with their top anchors on the same stage?

I know how difficult it was for me to watch the last broadcast, but I also know how very important it is for cancer research to get this kind of publicity. The Susan G Koman Foundation has brought breast cancer awareness to the forefront of Americans' minds, but breast cancer is not the only cancer out there. (I am sure at some point I will TRY and share my opinion on the pink phenomenon.)

Please tune in to this ground breaking broadcast. In 2008 SU2C raised over $100 million, and I really hope they can do even better this time around. Research needs money to end this horrible disease that tried to take my life, and succeeded at taking so many others.


I was diagnosed with Metastatic Carcinoma of Unknown Primary. Big words that basically meant I had cancer, it had spread, and they didn't know where it started. How do doctors treat something that they don't know much about? Shotgun therapy. That is what we were told they were going to do. At the time, I had heard this phrase before, but I really had no clue what it meant. Apparently, it means shoot it with all they've got, and hope and pray it works. This is EXACTLY what we did.

I began my chemo treatments on a Friday in May. (Quite possibly the first Friday, but I don't remember the exact date.) When I met with Dr. Guidice to go over my prognosis and treatment plan, he told me that we would try this shotgun therapy, every three weeks. And if I didn't take well to it, to let him know and we would stop. Otherwise, every three weeks, with CT scans like every 12 weeks. The chemo, Taxol and Carboplatin, would be administed over 6 hours.

My first chemo session at New Mexico Oncology

Marshall came in for my first chemo treatment. I was scared, but opptomistic that this would save my life. I don't remember a lot from that first day. I got there and was taken to a private room with a bed. An IV was started, and blood was drawn. Like most therapies, my blood counts were important in the dosage. I was given saline to keep the vein open while they ran my labs. I wish I could remember what was said to comfort me, and my family, on this first foray into being a cancer patient, but I really don't. Another standard of my chemo, was a dose of Benadryl, given through the IV, in case I had any sort of allergic reaction. Benadryl, of course, puts me to sleep. So I was excited that I would get to sleep through most of the chemo, since 6 hours is a LONG time. Well, I had hoped I would sleep. Funny thing about receiving IV fluids over 6 hours, it makes you have to pee. Like every half hour it seemed. Luckily, the restroom was right outside the private room I was in, unluckily, I was extremely weak. Marshall had to help me up each time, and the toilet in the bathroom was so low, I could not physically pull myself up, after going to the bathroom. I wish I could say that this was the worst humiliation I suffered while going through treatments, but it was just the tip of the iceberg.

The nursing staff at New Mexico Oncology really were my angels, and for my second chemo, had gotten a toilet riser, which if you have never heard of this, it is an elevated seat, with handles. I was so very excited that I would not need help getting off the toilet. Only problem, I was getting weaker and weaker as the weeks went on. Getting up was no longer the main issue, but just getting to the bathroom in the first place. Again, the wonderful nurses had another idea to make my chemo sessions as hassle-free for me and my mom (and Marshall when he could make it) as possible. They suggested a catheter. Wait, what?!?!? Yeah, that doesn't sound hassle free, AND it sounds painful. It took a little convincing, but the catheter won out in the end. I don't remember exactly how many weeks and chemo treatments I had a catheter inserted, but it was a few or more. There were definite ups to the catheter. I could sleep through the treatment once the Benadryl kicked in, which was generally around 3-4 hours.

I wrote earlier of secondary effects of chemotherapy, but there was some immediate effects I had to deal with. First, chemo plays havoc on your blood cells, so even though I was only scheduled for chemo every three weeks, I had to go into the oncologists office every Friday, to have my blood drawn. Depending on my levels, red blood counts and white blood counts, I had a have a shot, sometimes two. Pretty much every Friday I had to have a Procrit shot. This shot is to help increase the amount of red blood cells, and hurts like hell. The best way to receive this shot is very slowly, as it burns less. The shot for white blood cells, Neupogen was given less often, but was much worse. You see, in order to produce more white cells, you have to get the bone marrow involved, and for those of you who don't remember, bone marrow is INSIDE the bones. Stimulating the inside of the bones is not fun, and very painful. This shot was also given in threes. After three injections, they would check my blood again, and if they white blood cells hadn't increased, I had to keep getting the shot. I learned after the first shot to take ibuprofen BEFORE the shot. On those Fridays, when I wasn't sure if I neeed the Neupo (as it was referred to) or not, I would take 400mg of ibuprofen right after.

Chemo, and weekly blood tests became a steady part of my life, and I guess the biggest thing I can say, at least I was never afraid of needles.

Friday, July 30, 2010

Secondary Effects

For cancer patients we all have the dreaded "after chemo" effects, and although they are different for every patient, there are similar classifications, or groups, of these effects.

Once I started chemo, I had several effects that I could count on every time.
  • The day after I had so much energy. My mom used to joke that I could run La Luz (the hiking trail from the base of the Sandia Mountains to Sandia Peak in Albuquerque, NM) the day after my chemo. 
  • Around day 3 I started feeling like I was hit by a truck. I had no energy and would get nauseated. 
  • My tastebuds would react to the Decadron steroids. I could not eat or drink ANYTHING with sugar or carbohydrates. Bread was horribly sweet, even water didn't taste right. I called it fuzzy. The only way I can explain it, is that is wasn't cold or crisp, it did not have a refreshing effect on me. I learned to combat this taste issue by eating high acidic items. Lemon drops hard candy were my favorite. It could break through the fuzziness on my tongue.
 Another dreaded aspect was losing my hair. But that will be an entire post of its own.

The biggest secondary effect that I am still living with is Hypomagnesemia. This means low magnesium level. Apparently, my chemo, a combination of Taxol and Carboplatin (more likely the platinum from the Carboplatin) wrecked my kidneys. The tubules in my kidneys have small holes were the magnesium leaches out.

I was diagnosed with Hypomagnesemia in September of 2004, 16 months into my cancer treatments. I had been hospitalized after returning from an Alaskan cruise, with Marshall. I had been home for about a week, and had a fever of 103 degree that I just could not shake. While I was in the hospital, my face began to tingle, like it was going numb, and my hands cramped up, such to the point that my hand looked like a claw. This happened to me once before, while visiting Marshall in Georgia. I thought I was having a panic attact at that time, but he took me to the emergency room, where they did blood tests and found nothing.

During this second "panic attack" my oncologist walked in and wanted to know what was wrong with me. With my face tingling, also came the muscles in my face contracting (like those in my hands), so I could not speak. Dr. Guidice ordered more lab tests right then. I tried to relax, and my mom sat by my side and rubbed my back. I finally fell asleep, and when I awoke, I was okay. Turns out that I had an extreme electrolyte shortage. I was low on Magnesium, Potasium, and Calcium. For the Potassium and Magnesium they gave me that through IV infusions, and the Calcium, well, they gave me Tums. :)

Turns out that Calcium is pretty easy to get under control, Potassium, too. Magnesium, not so much. Right there in the hospital, I started what would lead to multiple daily infusions. I was given 2-3 liters of Magnesium in saline, every day. When I was released from the hospital, my insurance allowed for home infusions, so I would not have to go into the hospital. This lead to needing a new IV started every three days.

I went through 19 months of chemotherapy, having an IV started each time, with no real trauma to my veins. Two months of daily infusions wrecked my veins. I had a portacatheter inserted for my infusions in December 2004, AFTER I was finished with chemo.

By January or February of 2005, I noticed that I was gaining A LOT of weight. I was down to one liter of saline a day, but that was 7 liters (6 1/2 Coke bottles) of SALT WATER that was being pumped through my body. I talked to my doctor and they decided that could deliver the magnesium in 50 milileters of Dextrose (a type of sugar) instead. That's 95% LESS fluid! I wish I had thought to ask that from the very beginning! I may not have gained close to 100 pounds!

My Magnesium level slowly but surely started to hold, and I was able to go from daily infusions, to 2-3 times a week, to once a week, to completely stopped in June 2006. All the while I was having the infusions, I was also taking Magnesium supplements. I would take 5 400mg pills, 4 times a day. That's 8 GRAMS. All to keep my Magnesium Level above a 1.0. The normal level is 1.5-2.5. On a really good day I was between 1.2 and 1.4. I learned from my Nephologist (a kidney doctor) that so long as I remained above 1.0, I was unlikely to suffer from Cardiac Arrhythmia, his biggest concern.

While I no longer need infusions, I still have to take the supplements. However, I have decreased the amount significantly. I still take 5 400mg pills, but only once a day. Every now and then, I know my level may be low. I get cramping in my feet and toes. It is really uncomfortable, but Marshall taught me a great trick to help loosen the muscles: find something round, like a tennis ball, and roll your foot over it, paying attention to the tightest areas. This is quite painful at first as well, but it's better than continually trying to pry your toes apart. 

Look Good...Feel Better...

I was just watching Rachael Ray (presumably a repeat, since it is summer) and Catherine Zeta-Jones was her guest. Is there a more beautiful woman? While I have not necessarily enjoyed all of the characters she has played, I do find her to be fascinating. On this particular episode, Catherine and Rachael were discussing Elizabeth Arden's new Red Door Red Lipstick where 100% of the proceeds go to Look Good...Feel Better.

I am a HUGE fan of this project, as I was a recipient of one of their boxes of goodies. I am still not sure if my mom got in touch with a program coordinator through the hospital, my oncologists office, or how, but on one of my last days in the hospital, the second time, I got a wonderful make-over.

At this point, I still had all of my hair, as I had only one prior chemo treatment, but I did have extremely dry skin. Cancer patients need to be very careful with what we put on our skin. I was taught the correct way to apply make-up, which, unless you have been to a Mary Kay party, who really knows how to do that? I was also shown how to line my eyebrows, which in a few short months, would be gone. For those patients who have lost their hair, they teach great tricks with scarves and wigs, and how to take care of a delicate scalp.

Look Good...Feel Better receives donations from all the big cosmetic companies. My box included Clinique, Este Lauder, Elizabeth Arden, Chanel and Clarins, to name a few.

Here are some facts from Look Good...Feel Better's website:
  • Look Good…Feel Better is a free, non-medical, brand-neutral, national public service program founded in 1989 and supported by corporate donors to help women offset appearance-related changes from cancer treatment.
  • Each two-hour, hands-on workshop includes a 12-step skin care/make-up application lesson, demonstration of options for dealing with hair loss, and nail care techniques. Held at comprehensive care clinics, hospitals, ACS offices, and community centers, local group programs are organized by the American Cancer Society, facilitated by LGFB-certified cosmetologists, and aided by general volunteers. Patients in various stages of treatment receive make-over tips and personal attention from professionals trained to meet their needs. They also use and take home complimentary cosmetic kits in their appropriate skin tones (light, medium, dark, extra dark) with helpful instruction booklets. Professional advice is provided on wigs, scarves and accessories. (Teen sessions also include social and health tips.) More than 50,000 individuals participate each year in small groups of five to ten, offering each patient a supportive circle, as well. Group programs represent the highest level of expertise available (the “gold standard”) in LGFB services.
As soon as I get my pictures scanned, I would love to share my Look Good...Feel Better makeover. It really made me feel better about everything I was going through.

Wednesday, July 28, 2010

Funny Story 1

Each week I will tell a funny story, and while they may not seem exactly funny, I chose to look at them as funny, as a way to help me cope. (Actually, most of them are quite funny, after the fact.)

Right after I was diagnosed, I recieved tons of flowers and stuffed animals to keep me company in the hospital. My sister gave me this little purple hippo. He was so cute, and fit perfectly up by my head on the top of the hospital bed. One particularly bad night (that I have some memories of, but not all), I was talking in my sleep. Not so weird, since I do this all the time. My mom's best friend, my "Aunt" Vicki was staying with me that night, so Mom could get a good night's sleep. Poor Vicki wasn't as lucky. In my cancer-related stupor, I was so concerned that my purple hippo was trying to EAT Vicki. I guess I must have been really convincing, because Vicki went and got a nurse, who proceeded to tell her that nightmares and talking was normal. I do have a hazy memory I her saying something like listen to her, and the nurse conceeding that maybe it I wasn't acting exactly normal. I do remember being told by the nurse that he was giving me some Demoral, and to try to not fighting it. I then had a really restfull night.

While you may not be thinking WOW! That WAS funny! Just picture a stuffed, purple hippo, about the size of a football. He was so cute. And I am okay sharing this story with you, to show that even prior to chemo brain, some crazy stuff went down.

My Family

I think I may have been unfair to my family in my first couple of posts. They really are great people. I have three siblings, twin brothers, and a younger sister, along with my parents. Here are some stories about them, and how they did support me while going through cancer treatment.

During my first hospital stay, my brother Tres spent the night with me at the hospital. This was one of the nights I had to have a blood transfusion, and he helped me drag my IV stand to the bathroom, NUMEROUS times. He also offered to stay home that summer to help out, instead of doing an internship for school. Of course I told him to go, and he now works for that some company he interned for. Tres was actually there quite a bit. I have more stories, but I think I will save those, for now.

My other brother, Reed, offered to move home from where he and Tres were going to school, several times. The day I shaved my head (that is a whole story in and of itself), he brought me a bunch of his bandanas. I know how hard it had to have been for both of my brothers (who turned 20, right after I was diagnosed) to summon the strength my parents needed from them. They were both there, smiling as best they could.

My sister, Traci, is 7 years younger than I am, so when I ended up back home, she 15, and finishing her Freshman year of high school. I still feel so bad, because when she was growinig up, my parents always told her that her time would come. When it would just be the three of them. My brothers graduated from high school in 2001, and I ended up back home in April 2003, so she had less than 2 years of "just her" time. I think she handled everything as best she could. We had such a good time together, especially when I was feeling up to it, and Marshall was in town, we did things like go to the zoo, or balloon fiesta. I got to see my sister as the beautiful young woman she was becoming, as well as one of my best friends.

My parents drive me nuts but ground me all at the same time. They were both in the military, and I am proud to say I was (and am) a military brat. My parents met in the Air National Guard, although my dad was first in the Air Force and served in Vietnam. Through his time in the Air Force and Air Guard, he hurt his back. When I was in middle school, he had back surgery to fuse his spine, where he had disks removed. The back surgery was successfull, but the trauma caused him to be diagnosed with Multiple Sclerosis. I believe I was a junior or senior in high school when he finally admitted that he really did have MS and began treatment. My mom spent 27 years in Air Guard, retiring after 20 years active duty as a recruiter. Three months after her official retirement, she suffered a stroke in July 2001. Turns out she has a blood disorder that causes blood clots to form directly in her lungs.
Aren't we a lucky family?

So, my dad has MS, my mom had a stroke, and then I was diagnosed with cancer. Seeing as my mom and dad both survived, we all knew that I too would pull through this, and I did. With their love and support.

Then there is Marshall. We met in Las Vegas, at a bar. I was visiting friends, and taking care of things so I could register at UNLV for the fall semester. He was there for a conference. I can't say it was love at first site, but he saw something in me, and I was intrigued by him. We exchanged email addresses and I was certain I would never hear from again. Turns out I did, but even I had no idea what would soon happen. He was 46 years old (I was 21) and twice divorced. He had two children, not much younger than me, but as the emails turned into phone calls, I found myself drawn to him. He was so easy going, and I could tell from the beginning, he was genuinely interested in what I had to say. I met him in May, he told me he loved me in July, I flew to meet him in Georgia in September, and had moved here by the end of December. The most whirlwind romanace I have ever had, and 8 years later, we are still going strong.

Tuesday, July 27, 2010

They Say Children Are Our Future, But Are They In Mine?

So many friends of mine are pregnant, including my sister-in-law, and while I am very happy for them, I can’t help but feel devasted at the same time.

Let me clarify, I don’t know if I can have children. A couple years ago, my husband and I decided we were going to start trying. I bought a book where I could keep track of my periods and all of that, but then my periods stopped showing up.

I made an appointment with a new OBGyn in Athens. The original OBGyn I had been seeing did not accept Medicare anymore, and so I had been getting my annual exams done by my PCP. I scheduled the appointment with the new OBGyn to discuss fertility issues related to my cancer treatment; however, I believe this doctor looked at me and saw a 250 pound woman, NOT a cancer survivor (more about my weight in a later post), because instead of talking about fertility tests, he mentioned that a lot of overweight women find it easier to concieve AFTER losing weight. Well, that makes sense.

Although, in my case, I would like to know if I can or cannot have children. What good is losing weight going to do for my yearning to be a parent IF chemo completely wrecked my reproductive system? This doctor is still my doctor, for now. Mostly because I was laid off from my job as a travel agent in May 2009. My husband and I decided that with steady money not coming in (he is self-employed), trying to get pregnant at that time was not exactly smart.

The truly sad part of the whole story is a lack of support from my family. When I was sick, everyone said it was unfair to a child to bring them into a world where I might not exist. Then once I got better, it was unfair to a child to have a father so much older than them. (Marshall is 54 years old, 25 years older than me, more on that later, too). I still don’t understand why I should be punished or penalized for falling in love with someone older, or the fact that I got sick?

My younger brother (whose wife is currently expecting) has a little girl who is almost 4 years old. She is such a joy. When he found out that Marshall and I wanted to start a family of our own, he called me to discuss all the things about parenthood that you don’t learn until you are in the throes of parenthood. And he basically called me selfish, that I was too self-centered to be a parent.

Again, I don’t understand how people who have children and know what a blessing they are would ever want to deny others from feeling that way. Obviously, I know that being a parent is not a walk in the park, but as in everything in life, you have to work at it to be happy and successful.

Marshall and I have a pretty good life now. His business takes up a lot of his time and we can’t just up and leave for a week anymore, but with a little planning, there is not a lot stopping us from doiong what we want. I do really enjoy that. But I know more than anything, I want to be a parent someday. I also know that if it never happens, Marshall and I have a strong enough relationship to make it through. What I worry about is what happens after Marshall is gone. We could have 30 more years together, but I always hear that the children are what help widows and widowers move on. Who will I have down the road?

We have talked about adoption, in passing. I had planned to have an indepth conversation about adoption on a recent trip, but we were having such a good time. But I do believe that is an option.

Friday, July 23, 2010

Living (and Dying) in Georgia

I moved to Athens, GA in late December 2002. A few days before the actual move, I was diagnosed with a Urinary Tract Infection and put on antibiotics. Funny story, getting all my stuff together to move was quite hectic. My dad wasn't exactly happy that I was moving 2000 miles away to live with a man twice my age. (He actually tried suffocating me with a garbage bag on Christmas day! I think he was trying to be funny, but as he was picking up wrapping paper he slipped the bag over my head! But I digress.) So Dad and I were in the front yard trying to put my camper shell back on my S-10. He kept hitting it, and cussing. I was getting worried at how he was going to act once Marshall got to NM. All of a sudden (it seemed) I broke out in hives. Okay, I'm having a panic attack, I thought. Turns out I was allergic to the antibiotics! Hives cleared up as soon as I finished the prescription. I thought that was an interesting story to start with. :)

I wish the UTI had gone away, like the hives. I had been in Georgia for like one week, and I was still having pain, so I went to the GA version of Urgent Care, called Quick Care. More antibiotics. The pain didn't go away. I found an over-the-counter pill called Azo that was supposed to help with the pain, and only side effect, it turns your pee orange. Okay, I can deal with that.

As the weeks went on, the pain got worse, and seemed to spread. Now all of a sudden, my legs were bothering me, and I pulled my groin muscle. If anyone hasn't pulled this ITTY-BITTY-TEENY-TINY muscle, DON'T! It hurts like hell, and takes forever, it seems, to heal. All this time I was taking classes in Atlanta at Georgia State University. It was a 60 or so mile drive into Decatur, GA to the Avondale MARTA station, where I caught the train into downtown, then walked 5-10 minutes, to the Aderhold Building for my first 2 classes. I learned that if I left the house before 7:00AM, (if Good Morning America came on, I was running late!) and caught the 9:18 train, I could be in class before it started at 10:00. If I missed that 9:18 train, well, I was going to be late.

So back to the pain. I started having other issues in early February. Issues of a female kind. The Quick Care put me in touch with a local OBGyn, but I would have to wait until March to get in to see them. Okay, I can wait. I remember that this was February, because Marshall got tickets for us to see Bon Jovi at Philips Arena in downtown Atlanta for Valentine's Day. He also made hotel reservations at the Westin Peachtree Plaza for that night. The plan was for me to meet him at the hotel after I was done with class. I walked the 5 or 6 blocks from GSU, but by the time I got there, I was tired, sore, and in a lot of pain. We walked across the street to the Hard Rock Cafe for dinner, but when it was time to head to the arena, which was only a few minutes walk away, I couldn't do it. I made Marshall get a cab. The concert was wonderful, but I really couldn't enjoy it. Moving hurt WAY to much, so I sat and listened. I could not even muster the strength to stand when they played MY song "It's My Life, " and that KILLED me.

At the Westin Peachtree Plaza

That would be the first of several cab rides to travel a couple blocks in downtown Atlanta. One day in particular, I just could not walk the 4 blocks from Aderhold to the General Classroom Building. I hailed a cab, but I was so weak, I had trouble pulling myself up into the van. In fact my foot slipped at one point, and I received a bad gash/scrape on my shin. (The bruise/mark from that scrape remained on my shin for almost a year!) Another problem I had was getting into the building. The street entrance that I used had half a flight of stairs to get to the door, then you either had to go up or down another half flight of stairs to get to the elevators. Why did I not use another entrance? That was an even further walk.

On several occasions I was in so much pain after walking from Aderhold, I did not think I could even try to go up the stairs. One day I called Marshall after my first two classes and made him drive the 20 miles from Tucker, GA to downtown to come get me. I can't remember if he drove me home, or just back to my car, but I was in that much pain. Another morning, I did not even make it into Atlanta. I had started driving with my leg tucked under me, because of how much it hurt to sit. I was driving towards Atlanta from Athens on 316 (the main road between the two) and started getting very nauseated. I pulled over at a Waffle House and did not even make it out of the car (but had the door open) before I puked. (For months after, the parking lot still had an orange hue, probably from those AZO pills.) Marshall had JUST gotten to work when I called, so he turned around to come get me. The truck stayed at the Waffle House until that weekend when his he and his son could go pick it up.

And then there were the times I did not even make it out of the driveway. One morning I was headed to school, and tripped and pulled that groin muscle again. I had to pretty much crawl back in the house. There was no way I was going to be able to drive to Atlanta.

Through all of this, I had countless visits to Quick Care. I had several pregnancy and STD tests done. At one point I was beginning to wonder if I had Multiple Sclerosis, like my dad. I was diagnosed with UTIs, URIs (upper respiratory infections), yeast infections, etc. but no one seemed to put all my symptoms together. One horrible night Marshall took me to the ER, where the doctor I saw proceeded to give me the worst and most painful pelvic exam I have ever had. Let me just tell you how hard it is to hold your legs in the stirrups with a pulled groin. I tried to explain that the pains I had were not menstrual-type, but when you are a 22 year-old female presenting with abdominal pain, they want to do a pelvic exam (I had probably one a week for a while there!). I ended up back at the ER the next day, but they had me seen at the Quick Care at the hospital, where I refused a pelvic exam. Still nothing.

By this time, it was early April. I had seen the OBGyn, and they decided that those issues I was having, was from an overactive Skeen's Gland (never heard of it? Yeah, me neither.), and they suggested removing it, as it really isn't important. I knew I was going back to NM for Easter, so I scheduled the surgery for the week after I got back. Only, it would be over 7 months before I returned to Georgia.

Where Do I Begin?

I have had medical issues my entire life. Nothing serious, really. Allergic to mosquitoes, being extremely clumsy and ending up in emergency rooms, having female issues. Basically, all of these issues meant that I did not go running to the doctor every time something was weird. I learned much later that when something is off, you should go to the doctor. So I did.

While there was months leading up to my diagnosis, I will focus, at least for this post, on the days leading up to that day.

April 17, 2003

I had a flight to Albuquerque, New Mexico, to go home for Easter. I had been having issues for a while here in Georgia, so my mom made me an appointment to see my primary in Belen. I remember waiting at the Frontier ticket counter in Atlanta for a wheel chair. Whatever was going on with me made it difficult to walk any distance. Sitting was pretty bad, too.

The wheelchair came and I made it to Denver. This was a particularly horrible layover. My connecting flight was delayed due to rain; our gate was changed several times and eventually I was parked in front of the gate they HOPED the flight would depart from.

By this time, I was in a lot of pain. I can't really describe it. My bones ached and felt like they were on fire. I had been keeping in contact with my mom, trying to let her know when I would get there. She could obviously tell I was hurting and asked if I wanted to go straight to the hospital. I told her I just wanted to get home and to bed. I would see Laura (my primary) the next day.

They finally brought a plane up from one of the hangers, but we had to wait for it to cool down. I remember FINALLY being on the plane and asking a flight attendant for a glass of water so I could take some Ibuprofen. I was in so much pain! She told me that we were getting ready to taxi and she could not give me any water. I cannot remember how many more times I asked or if I cried to her, but she finally agreed and gave me some water. She also told me that as long as the fasten seatbelt sign was off, I could stand in the bulkhead area. Remember, I said that it hurt to sit.

Well, I finally landed in Albuquerque, HOURS late. My uncle worked for the Albuquerque Fire Department and got special permission to meet me at the plane. (Not the gate, he was waiting on the jetway with a wheelchair!) I don't remember much after that. We went home, and I am sure I went to bed.

April 18, 2003

Friday morning was my doctor's appointment. Good Friday. I should clarify that my primary, Laura Griffith, is actually a Family Nurse Practitioner. I remember explaining to Laura what all I was going through. (Don't worry, I will explain the months prior to this in another post.)

She heard me cough the "sick person's cough," as my mother calls it, and immediately sent me to have a chest X-Ray. After she looked at them, I was sitting on a gurney, wearing a mask, and waiting for an ambulance to take me back to Albuquerque, and the hospital.

I bypassed the emergency room, and was whisked upstairs, at Presbyterian Hospital, to some sort of reverse oxygen room, used for Tuberculosis patients. Many more tests were ordered and Saturday morning...

April 19, 2003

The hospitalist walked in to the room. The sun had only started peaking over the Sandia Mountains. She looked at my mom and I and said "I am so sorry, it's cancer."

Now, that news was not as devastating to me, as I am sure it was to my mom. The reason why? I REALLY was sick! It wasn't all in my head. And I knew that a diagnosis meant they were going to fix me. In those first few moments, I never considered I was dying, or already actually close to dead.

That day I had many more tests done. Including CT scans of my torso and head. They wanted to know just how far the cancer had progressed and where and how it started.

April 20, 2003

Easter Sunday. My mom tells this story best, so I will use her words.

"As the sun came up over the mountains, that Easter morning, the doctor came in and said 'It's not in her brain.'" Which she knew was the best news she could ask for. I needed to be able to tell her and the doctors what I was going through, and with the cancer NOT in my brain, I could.

The cancer was pretty much everywhere else, though. I had multiple tumors on both lungs. Mom said the X-Ray looked like someone had splattered paint. There was also a tumor 2/3 the size of my liver and it had progressed into my bones. The cancer has eaten a hole in my left hip, and eaten away my tailbone. Thus the reason walking and sitting were so painful.

I spent about 10 days in the hospital. During that time, many old faces passed through my room. Some I hadn't seen in years, and a few that I wasn't sure I would see ever again. It is very sad to think of the reason these old friends came to see me, but for whatever reason, I am still so grateful at the outpouring of love and support my family and I received.

There was one very special visitor at that time. The reason I was in Georgia in the first place (but more about all of that later). Marshall, not sure if I would have classified him as my boyfriend, fiance, or just the love of my life, flew in a week after I had been in the hospital. With him, he brought a ring. He told me that if he was going to lose me, it was going to be as his wife, NOT his girlfriend.

Unfortunately, for legal purposes having to do with insurance, we could not legally get married. However in my hospital room, with my best friend Renee and God as our witnesses, we pledged our love to each other "forever and always."

Our "wedding" picture taken at Presbyterian Hospital
April 26, 2003

I was discharged from the hospital a few days later. Marshall could only stay for the weekend, as he had to be back at work on Monday. I have to say one of the luckiest breaks I had in the hospital is that Richard Guidice was the doctor on call.

I met with Dr. Guidice a few days after being discharged, to go over prognosis and treatment plan. My mom's friend Steve Jones came with us to take notes and ask the questions we forgot. We also could not be expected to digest and remember everything we were told that day. And to this day, I really don't remember. Except when Steve asked the dreaded "what's the best and worst case scenario?"

Dr. Guidice said at best 2 years, and at worst 8 months.

My reply: "That doesn't work for me."