Wednesday, June 5, 2013

At the End of This Journey: Hoping to Never Return

          So two weeks ago I finished my last round of chemo. It was not as hard as when I faced cancer the first time around, over two years ago now. I know that the chemo regime was harder this time, but I think that I was just stronger both physically and mentally. A lot of things contributed to me getting through this once again though.
          Of course my family was very important through this whole thing. They helped me to not worry about the small things, or the big things, that come with the whole cancer experience. It allowed me to just focus on beating cancer once again.
          My mom, who just recently moved out of state prior to my diagnosis, did everything in her power to make sure she was there every chemo week. Sometimes that even meant flying in and out multiple times in a week to juggle her job and being here for me. I guess it's true that a mother will do anything for her kids.
          My sister, just like the first time through, was there anytime she could be and juggled her work numerous times just to make sure she was there. On the days she wasn't she always checked up on me.
          And for the first time in a long time I saw a different side to my brother. I have always looked up to him; not sure why, maybe it's because he is such a good athlete and I never was, but now I can say it's because I got to see the caring and nurturing side of him. I'm sure it had a lot to do with the fact that we live together, whereas in 2010 I was living with my best friend. But no matter the reason, this time he always made sure I was okay. If he heard me throwing up he would come running into the bathroom, rub my back and say it's ok, everything will be fine. He would always try to encourage me that there were only a couple days left in this round, or towards the end he would make sure to remind me that there were only a few days left until I was completely done.
          Then there was my girlfriend, who stayed with me the week I got home from chemo. The nights were always tricky; I dealt with a lot of anxiety during the couple of days right after chemo ended. Many nights I wouldn't sleep because my mind would wander. She would always try to relax me and try to calm me down so I could sleep. One night she even went for a walk at 4am with me when she had to be up at 7:00 for work.
          Last but not least is my best friend Christina. She was my go-to person. Anytime I would feel down or not have a good day because of throwing up, or whatever, I would call her. She knew how to straighten me out. At the drop of a hat, if I called her and needed something, I could always count on her to be there. Don't get me wrong, my family would do the same thing for me, but I just always felt more comfortable either hanging out with her or talking to her. Christina, like the first time through, was my source of comfort in an otherwise uncomfortable situation. She was always looking out for me, even when I wasn't expecting it. There were nights I would get up to vomit, and not even make a peep, and she would immediately be like, "Are you okay?" It was as if she slept with one eye always open, making sure I was ok. It didn't matter if she slept or not.
          Not to be forgotten is my stuffed monkey Noodle. I have always been a kid at heart, even at almost 30-years-old. Just like kids I need my comfort, and that came in the form of a little monkey that was with me every step of the way. It didn't matter whether I was in the hospital, the hotel during chemo, or home, he was always by my side. I guess no matter how old you get you always need to feel safe and comfortable, and that is what Noodle has and always will do for me.
          Also, I dont want to forget the words and prayers of many, many people along the way. There is something about seeing words of encouragement from all sorts of people; it kind of just picks you up when your feeling a little down.
          Now comes the waiting game; waiting for my PET scan date to come so I can know what direction I'm going to be heading in in the next couple of months. Until then I'm just focusing on getting better and stronger each and every day.

Tuesday, May 7, 2013

One Disease Affects Many

So as I begin my last and final round, I feel it is important to share something that was sent to me. It is a very touching letter written from a caregiver's point of view. Some forget that more than just the patient is dealing with this horrible disease. I will touch more on this in my next blog but until then enjoy, and thank you Cameron:

Helping a Loved One Fight Cancer

I'll never forget what happened on November 21, 2005. On that fateful day, by beloved wife, Heather, received a diagnosis of malignant pleural mesothelioma and I became her caregiver. As one might imagine, I wasn't prepared for the job in the least. Only three months before this terrible day, we had been feeling ecstatic over the arrival of our daughter Lily, our first and only child. We were thrilled at the idea of spending the holidays together as a family and of celebrating our baby's first Christmas. Rather than feeling joy, however, there was only chaos and sorrow upon hearing the news that my wife had cancer.

The full weight of what it meant to be a caregiver hit me before we even stepped foot from the doctor's office after my wife's diagnosis. The doctor gave us some basic information about the disease and recommended that Heather be treated by a specialist. Locally, we had the option of going to a university hospital or a regional one that was very respected, but unfortunately lacked a mesothelioma treatment program. However, the doctor also told us that there was a mesothelioma doctor in Boston, Dr. David Sugarbaker, who was an expert in the field. I stared at my wife as I waited for her to speak or to at least show some interest in one of the options. Instead, she just looked terrified and disbelieving, like she was in a nightmare she couldn't wake up from. I knew she needed help, and immediately, I told the doctor that we would be going to Boston. All I could do was hope that this doctor in Boston would be able to help my wife.

The two months that followed were pure chaos. We had no more daily routine. We had both worked full-time jobs before this happened, but Heather had to quit in order to focus on treatment and healing, and I had to move to part time to take care of everything at home. I had to juggle a job, my wife's care, trips to the doctor, arranging travel and caring for a child. Naturally, I was becoming overwhelmed. I was also terrified that, despite these efforts, I'd lose my wife anyway and be left a homeless and penniless single father. I broke down a number of times, but never in front of Heather. I knew that she needed me to be strong, and the last thing she needed was to see my fears.

My wife and I were surrounded by wonderful people willing to help. We received everything from comforting sentiments to financial aid and we'll never quite be able to express the depth of our gratitude to those who reached out to us. One important piece of advice I'd give to other people who are in a similar situation is this: When someone offers you help, big or small, accept it graciously. I had to learn the hard way that there is no room for stubborn pride in a battle with cancer. The people around you care and they're willing to do what they can to ease your suffering.

It's never easy to be a caregiver to someone who is battling a horrible disease like cancer. There's simply no way around that. You're going to feel overwhelmed, stressed out and hopeless at times and it will, in all likelihood, be the hardest trial you will ever have to endure. Unlike school or a job, you can't just say, "I quit" and forget about it. It's essential that you don't lose yourself to feelings of anger and fear. It's okay to have a bad day occasionally. It's understandable under the circumstances, but you must never stop hoping. Taking advantage of every resource available to you will help you maintain your sanity and get through the hard times.

Several years passed before our lives returned to a semblance of normalcy. Heather received surgery, chemo and radiation, and though the odds were not in her favor, she managed to beat mesothelioma. Seven years later, she's healthy, alive and free of cancer.

The biggest lesson that I took from this unfortunate experience is that my stubbornness can be a benefit and the time we have is precious. With this in mind, while taking care of my wife and daughter and holding down a full-time job, I decided to go back to school for Information Technology.

After getting a hard lesson in how to handle stress and juggle commitments while helping my wife battle a deadly disease, I was well-equipped to further my education. I was rewarded with high honors and was appointed to be the student speaker at my class' graduation. I recall the speech well. I spoke about Heather's diagnosis and said that I never imagined I'd be standing up there in front of everyone making my speech. I also encouraged everyone to hold on to hope and let them know that they're all capable of doing and enduring much more than they think they are as long as they have faith in themselves, and never stop fighting for the ones they love.

Cameron Von St. James
Mesothelioma Cancer Alliance

Sunday, March 24, 2013

Halfway to the Finish Line

       Finishing up my second round of chemo has been a little trickier than the previous round. The hardest part for me is definitely the first 10-12 days of each chemo round. It is a very challenging process because it is completely unpredictable.
       I have always been one to control my mind and body, but during these first two weeks I control nothing. I throw up and have anxiety, which are all out of my control. I lose the will/urge to eat or drink and that just causes other issues to occur. I have tried about a million different things to prevent all the side effects but to no avail. So at this point, I have come to terms with the fact that each round I'm going to feel like shit for those days, and that's it.
      Due to Good Friday, my third round of chemo has been pushed back, therefore, I get an extra week for recovery. I have mixed emotions about this one because it pushes my last day of chemo back a week as well. However, it gives me one more week of feeling normal. I just hope that after round three my doctor doesn't decide to do the same thing for my last round.
      I guess like everything else with cancer only time will tell. So I just have to keep my head up and look forward. In a few short days I'll be starting round three and I will be that much closer to the end.

Tuesday, February 19, 2013

One Strand at a Time

        So it was bound to happen, but why is it so hard to accept? My hair is falling out. I woke up on Tuesday morning of last week and looked at my pillow and I saw no hair. "Yes!" I said to myself, another day that my hair is on my head. But later that day I hopped in the shower, and as I was washing my hair I saw small strands on my hands. 'Oh no! It's starting.' Why was I so shocked? This is when I figured it would happen.
        I planned for a haircut on Saturday. However, Thursday morning when I got in the shower and began washing my hair, this time clumps came out. When I finished it looked like a small animal was by the drain of my shower. Okay, change of plans, I would be getting my haircut the next day. I couldn't handle another day of this.
        Once I got out of the shower I did the only thing I could think of; I called Christina and allowed myself to cry for about a minute. I'm not really sure why I cried, maybe it's because to me the loss of my hair is another physical reminder that "you have cancer." It's just another thing I can't control during this journey.
        I could, however, control WHEN I lost it. So on Friday morning I headed off to my barber of 18 years. When it was my turn I sat down and said, "Change of plans. We are going to shave it, the cancer is back." He said, in a thick Russian accent, "Fucking cancer," which completely made my day, and proceeded to shave it. It was kind of hard watching all my hair come off, but I know that in four or five months it will all be back.
       Sometimes it's hard to look in the mirror, but when I look hard enough I see a fighter. This was just another step in my journey through cancer. No matter what I face I will face it head on. After all, fighters always fight!

Thursday, February 14, 2013

Reality Sets In

        So I finished my first round of chemo on February 1st. The week started off okay. Receiving the chemo went smoother than I could have imagined. Opting for the port was a great decision. No worrying about how my veins are going to hold up or how many times they are going to stick me. Just one quick poke and I was good to go.
        Sitting in the infusion room, however, was hard to deal with. It felt uncomforting. I felt out of place since I was the youngest person in there by at least twenty years. There is nothing to do but sit and wait out the five hours of chemo. I had my sister and my mom there but in all honesty it didn't really make anything better. I just didn't like the feel for the place. I felt sicker just being there.
        After day one I felt great physically though. I thought, 'Wow, this is going to be easier than the last time!' Day two same thing, in fact I even went to the driving range after because I felt so good. As Wednesday rolled in, however, things started to change.
        I began having "hacking" episodes because the chemo was causing an overproduction of mucus in my throat. That in turn would cause me to feel like I was choking and needed to "hack" in order to clear my throat. That Wednesday was probably my last good night. I went out to Dave n Busters with my friend Chic and my sister hoping I could still pretend that this time was going to be easier.
       Thursday and Friday were both miserable. I lost my appetite and didn't sleep much each night. I would spend hours every night just "hacking". When I returned to my sister's Friday night I didn't eat anything and just laid in bed.
       I have always taken great pride in how strong I am mentally and over the next couple of days I began to doubt it. My mind was consistently racing with thoughts and fears. All this combined with the "hacking" was making it hard for me to get any rest at all. All I wanted to do was be back in my bed at my house. I feel safe and comfortable in my bed.
       Finally Sunday arrives and I'm waiting to go home to my own bed. It had been such a long week and I was drained completely. But just before I was ready to leave my sister's, I realized that something was not right so my mother and I decided to make a pit stop at the ER. There I received 3L of fluid for my extreme dehydration and some pain meds before I finally made my way home.
       By this time it was 1030pm and I was just drained. Once my mom dropped me off I get settled in and went right to sleep. Sunday night was the fiirst good night's sleep I had in almost five days. Unfortunately, it ended there.
       Besides another sleepless night on Monday, the side effects were also getting worse. On top of feeling weak physically, I was really starting to feel it mentally. Not only was I up "hacking," I couldn't clear my head of all these crazy and odd thoughts. My mind was playing tricks on me and I didn't like it. .
       By Tuesday morning I was exhausted, and still having trouble keeping food and fluids down because of the chemo, so back to the doctor I went. There I was given another liter of fluids, some anti-nausea meds, and anxiety meds to help me sleep.
       One of the downsides to that visit was learning how much weight I had lost in such a short period of time. The week leading up to my treatment I had packed on almost ten pounds of weight in the hopes that during all this I could maintain my body weight of 132lbs. When I hopped on the scale that day, with sneakers and two fleece pullovers, I weighed 128lbs; far from the 140lbs I weighed just four days prior. I hate setting goals and not being able to achieve them. It eats me alive when that happens. Not only was I losing it mentally, but it seemed my body was losing it too.
       That night, to give my body the break it needed, I took the meds they prescribed and slept really good. By Wednesday I was slowly beginning to feel better. I could eat and drink normally, which was good because I needed to pack on some pounds. I also took my moms advice to get out of bed and move around.
       For the first time in over a week I felt like me again. I realized that I needed to handle my cancer and not have it handle me. I decided that going for a walk on my treadmill was what I needed to do. For those of you that don't know me, I'm a fitness junkie. Before getting sick I would spend hours at the gym. I loved it. It is who I am.
       Up to this point I had not worked out in about a month because I had just got the port put in and was too worried about messing it up before it healed properly. So just beginning on a treadmill, walking, had me feeling like a million dollars. I ate and drank like a champ that day and knew I was back.
       I also did some more research on my chemo drugs since this time around was a different regime than the last. The one thing I kept reading was that there was a chance that the two new drugs, Vinblastine and Ifosfamide, will cause hallucinations and other mental side effects. I felt so much better after reading this. It gave me an explanation for the weird dreams and anxiety I was experiencing for the first time ever in my life.
       I continued to take the anti-nausea and anxiety meds for one more night since the effects of the chemo started to feel like they were wearing off. No more mucus and no more bland taste in my mouth. I thought I was finally over the hurdle.
       However, Thursday morning I woke up with chills. I took my temp and it was 101.5. Great! In five previous rounds of chemo I never once had a temperature. This time, first round in, I had one. Knowing what a fever means for a chemo patient, I had my girlfriend drive me to the ER right away.
       By the time I got there I was drained. I got checked into a room and for the next six hours they did numerous blood work and scans. They were not going to miss a thing. I got the works from head to toe.     
       The one thing they did know right away was that my white blood cell count was low... real low. They sat at .2. To give you a better understanding, the average person has a white count of 6. I never had whites that low before, no wonder I was sick.
       Later that day I was finally admitted into the hospital. I hate hospitals, especially this one...bad memories. But it really didn't matter how I felt. I knew this was the best and safest place for me, especially with my whites so low and a blizzard on the way. I was there from Thursday to Monday. I think the fact I had visitors a couple of times and also that I had no expectations on when I was going home, helped me accept I was stuck there. I also pretended that my hospital room was a hotel room, and that I was stuck there on a business trip. Sounds a bit odd but it worked for me.
       Once my whites came up to 1.5 they felt I was good enough to go back home and I can tell you I for one was not going to argue. It feels great to be home and my body weight is slowly coming back up as well. I have just about two weeks left before I start chemo again, so now it's time to get stronger. I learned that no matter how prepared you think you are you can't be prepared enough. I took this second time around slightly for granted. I thought it was going to be way easier for me, but now I'm aware of what I'm going to face over the next couple of months. My guard is up and I will not underestimate my cancer.

Sunday, January 27, 2013

Called Back Into Action

      So it's been nearly two years since I last posted. Since then I have accomplished a lot of the goals that I set out to when I first got sick. Over the last two years I have done two century rides and a half marathon. I also started my own company. I was finally getting on track and moving forward. But then in December, while laying in bed, I felt a tiny bump on the back of my head.
      At first I thought nothing of it, and then I started feeling around my head for others. Normally I'm not a paranoid person, especially after being almost two years cancer free, but something didn't seem right. I felt uneasy about them. I didn't tell anyone about what I had found for almost two weeks.
      I was scheduled for another throat injection to help my vocal chords, and it was at this time that I finally brought it up to my throat doctor and asked what he thought. After speaking with him he felt that it was nothing to worry about and it was probably just swollen lymph nodes from fighting a cold. Hearing that made me feel better about it. He wanted to do a biopsy just to be safe because of my history. So I thought okay, no big deal.
      The following week I went in for a biopsy and the doctor doing the procedure had the same feeling as my throat doctor. He wasn't worried about it but said better to be safe than sorry. That was on Tuesday January 8th. I wasn't going to get my results until the following week.
     I didn't really care when I was going to find out the results because in my mind it was going to come back negative. I mean the reoccurrence rate for my type of cancer is only like 7%, so two years after being cancer free would I really fall into that percentage? On January 15th when I got the call from the doctor with my results I was expecting him to say "Hey, the results came back negative" and then I would hang up and continue my day. But that is not what happened.
     I was finishing up lunch with my best friend Christina when he called. All I remember him saying is "The results came back positive for seminoma." The only thing I could say was "Really." In the background I heard Christina say "Oh fuck." I really don't remember what else he said after that; it's kind of just a blur. I hung up the phone and just gave Christina a hug and cried.
     I thought, is this really happening? Yes it was. The sadness didn't last long because there was nothing I could do to change it. It was time to take action. After calling "my team" we got everything in order to face this head on. By Thursday I had a meeting with my oncologist and the next day a PET scan would be done. 
     My oncologist informed me of how we were going to handle this. He said I will be starting my chemo on January 28th, doing four rounds for five days, five hours a day. I will have three weeks off in between each round. He said that this regime was going to be more toxic then my previous one and was going to take a toll on my body. So basically I had less than a week to get everything in order to receive my chemo.
     After battling with myself I ultimately decided that this time around I was going to do chemo through a port. So on Wednesday the 21st I went in to have the port put into place. It was a simple surgery and I'm 100% confident that it was the right decision.
     So in just a few short days I will be starting Day 1 of 91; 91 days until I'm done with this battle. Every champion has a challenger. Cancer wants a second chance at the title and just like the first time he isn't going to get it.

Monday, April 11, 2011

Lessons Learned

          Some people when they are diagnosed with cancer all of a sudden realize how important life is. For me I realized that I need to change certain things. It's kind of strange some of the things I realized after my diagnosis. One of the things was the pleasure in drinking water instead of soda. Before I got sick I would drink tons of soda, to the point if I didn't have a soda I would got through caffeine withdrawal.
          When I had my breathing tube removed I had difficulty drinking liquids. Because of my damaged vocal chords I could not swallow correctly. If I drank liquids I would choke on it as it was going down. So it took a couple of weeks to retrain myself on how to drink liquids. Let me tell you, you don't realize how much you miss drinking liquids until they tell you you can't and make you drink thickened drinks. After about two days of drinking thickened drinks, I swore to myself when I am able to drink water again I will never stop.
          I am not going to lie, the moment I got the okay I drank so much water it wasn't funny. To this day I probably drink 10 to 12 16oz. bottles of water a day. There is no better drink, in fact I don't even really drink soda now.
          Another thing I learned was that there is no reason to work as much as I did. I was working probably seventy hours a week, sometimes working twenty four hours or more straight. For what, money? I was being run down and beat up. It was not worth it. I realized there are more important things in life than making money. What's the point in making money if you can't enjoy it? So I vowed whenever I go back to work that I am only going to work forty hours, no more. I need to enjoy every moment of everyday.
          Probably the biggest thing I learned was that I was given a second chance at life for a certain reason. I have a purpose. I am not 100% sure what that purpose is yet but I am trying to find out. I believe that it has something to do with cancer. Maybe it's something small, maybe its something big. But whatever it is I will find it and do it. Cancer has taken the lives of many people who are just like me. It tried to take me but it didn't succeed, so now it's my job to make my life stand for something.