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.

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. :)

Chemotherapy

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.

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.