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."