So I haven’t received too many questions lately other than “how are you feeling?” Soooo inspiration for a new blog post takes some serious thought….. or thoughts….. hmmm, “thoughts.” Well, interestingly enough, that is exactly what I have been working on for the past couple weeks, and really since this adventure started for me. How do I focus my thoughts to keep me happy, motivated, and most importantly heal me? Isn’t that what meditation is all about? I know how to stay positive, how to truly believe, but how do I pinpoint that energy to do exactly what I want it to do?
I will tell you I most certainly have had all the right preparation. Every car ride, golf match, hockey practice or ski trip was filled with conversation on the power of the mind and positive thinking. “Teej-a-beej, do you know what made Phil Esposito great? He was always in the right place at the right time. He was able to visualize where the puck was going to go before it went there, put himself into that position, and score.” My father has always been a huge proponent of that if you truly believe something will happen, your sub-conscious mind has the power to make it happen. It’s almost as if he knew, as if he was preparing me for this challenge, maybe subliminally he did know. Any of you that know my Dad well, know that he has always had a knack at predicting things, so why not predict one of the most significant moments in my life?
“What the mind of man can conceive and believe, it can achieve” – Napoleon Hill
I can’t tell you how many times my friends have responded “Ok Dad!” after I felt my input to the situation was necessary. I can tell you the majority of the time I was just making sure everybody was ok, that they were safe and happy, regardless of how the outcome would affect me or how annoying I was being. I’m not saying I have always made the correct decisions when it has come to my own personal path, for I have made plenty of wrong ones, but when I see someone in pain I get this gut wrenching feeling that I just can’t ignore. My Mom demonstrated this “trait,” this ability to speak up, when others would not numerous times through my life. Her compassion for the wellbeing of others has become engraved into my soul, it is what feeds what many of you have deemed my “strength.” You see…. every time I speak to one of you, or see one of you, or read one of your comments, I can sense your emotion…. I can see your hidden tears, hear the fear tremble in your voice, feel the struggle to contain your emotions when we embrace. All those feelings are what triggers that trait, that call to action, I want to make it better….. I want to make it better because I can’t stand do see any of you hurting. I need to make it better, I will make it better. And from that emotion, that gut wrenching feeling I build resolve and a strengthening energy that grows with every comment, prayer and text you send my way.
My parents may have provided me with the right mental tools to get the job done, but just because I have a sword doesn’t mean I know how to wield it. So it is my mission to learn how to manipulate, hone and master my skills. I need to learn how to take that strengthening energy, that positive belief and use it to my advantage. Fortuitously, my army is packed with compassionate and amazing people who have a breadth of knowledge, ideas and suggestions that have pointed me in the right direction. Everyday when I take a shower, I turn on some light relaxing music (usually Pandora set to Enya lol) and visualize the cancer rinsing from my body, I feel it slowly drain and think…. and believe:
“Let the Water rinse the cancer from my head down into my shoulders, rinse the cancer from my shoulders and into my chest, rinse the cancer from my chest and into my stomach, rinse the cancer from my stomach and into my hips, rinse the cancer from my hips and into my thighs, rinse the cancer from my thighs and into my calves, rinse the cancer from my calves and into my feet, rinse the cancer from my feet and into my toes. Squeeze the cancer out of my toes, rinse the cancer out of my toes, out of my body into the water and down the drain. The cancer is rinsed out of my liver, rinsed out of my lymph-nodes, rinsed out of my colon, rinsed out of my body, into the water and down the drain. The cancer is rinsed out of my body, into the water and down the drain.”
I repeat this process over and over again until I feel adequately cleansed, until I have drained every last drop of cancer out of my body. When I step out of the hot steamed up shower a burst of clean, pure, brisk, energized air hits me and I feel cured, I believe I am cured, I am cured. Now, If I can get such a rush from a shower, how can I harness that feeling in other aspects of my life?
A good friend pointed me in the direction of Reiki, a Japanese spiritual healing and meditation technique developed in
the early 1900’s by Usui Makao, but has influences that date back through time, multiple religions and martial arts. The practice is about harnessing your spiritual energy or “Ki” through mind, body and heart and the ability to heal yourself and others. If you are interested in learning about it, I am currently reading a great book titled: “The Japanese Art of Reiki: A Practical Guide to Self Healing.” What I have come to learn is that the practice of Reiki has been dramatically westernized over time, heavily simplifying the art, making sessions shorter, healing “instant,” and costs higher. This of course was not attractive to me and not how it was intended to be. I sought out someone familiar with its original direct form, called Jikiden Reiki. Well, that road has led me to a phenomenal human being named Jordan Blain. He has a spiritual healing practice called “Life Flowering” that combines not only Reiki but multiple ancient healing techniques. To say my mind was blown after my first session is an understatement, the level of relaxation and comfort I left his office with was unlike anything I have ever experienced in my life. I am looking forward to my next session.
That is where I stand right now, I like thinking I am kind of like Luke Skywalker the first time he met Obi Wan Kenobi lol…(to say I was a Star Wars geek as a kid would be taking it easy on me.) I am lucky to have been given this great power, this great energy, but I am just beginning my journey and have a lot to learn on how to tap into the source of it. I will be sure to keep you updated on my new adventure. =-P
Much Love – Teej
p.s. Alex and Marg thanks for pointing me in the right direction, I love you both very much!
I apologize I haven’t blogged for a week. To be honest, it’s because there really hasn’t been too much news flowing my way for me to relay and as the saying goes “no news is good news.” On the 12 days between treatment it’s really a waiting game and me trying to stay busy and focused. The most difficult thing with cancer is no matter what you are doing, watching, working on, it never leaves your mind… ever. The important thing is keeping my thoughts in a positive and motivated light, which I am able to do for the most part. My amazing support group which I have come to call “My Army” otherwise known as you, definitely makes that easier.
Anyway, the main reason for the creation of this website was to help my army stay updated, educated and most of all know that I’m happy. So I figured today would be a good day to answer another really common question people have for me: “What does chemo feel like?” Well, I can tell you that it is most certainly different for everyone and definitely varies depending on the type of cancer you have and chemotherapy drugs you are being administered. I also think the best way to describe it is to walk you through the treatment.
Every other Monday morning at 7 am I walk into the Mass General Yawkey building and take the elevator up to the 8th floor. I check in at the front desk with Mohammadi (one of the nicest ladies I have ever met) and get my hospital bracelet for the day. I take a seat in the waiting room, which is usually pretty quiet at 7am and wait to be called in for my vitals. If I look to my left, there is an awesome view of beacon hill and the Boston city skyline. I get called in for my vitals which includes, blood pressure, weight and pulse and then return to the waiting room. Shortly after, I’m called in to have my port accessed and blood work done by one of my infusion nurse’s Nikki and sent on my way to meet with the doctor.
At 8 am I have an appointment downstairs on the 7th floor with my physician Dr. Ryan and my clinical nurse Terri. They review how I felt the previous two weeks and then go over my blood work or complete blood count (CBC). My blood is an extremely important gauge to my health and continued treatment. The CBC measure’s levels in my blood called markers. The most important markers are white blood cells, red blood cells, hemoglobin, platelets and absolute neutrophils. There is a floor to each of those markers and if the level of any of those markers drops below the floor that days chemo cycle is to be pushed back until my blood levels are healthy enough to continue. For example, after my first week of chemo my absolute neutrophil level dropped from 2.96 to 1.37, if that level was below 1 my second chemo cycle would have been pushed back. There is also a blood test which monitors Carcinoembryonic Antigen (CEA) which is a tumor marker. They will test me before the next cycle to see if the original level of CEA has dropped in my blood. A drop would be an indication that the tumors have shrank (I think).
At 9:00am I head on back upstairs to the infusion center’s waiting room. By this point the place is packed with oncology patients, each wearing their own “armor” and ready for the next battle in this long war. Their visible scars, multi-colored bandanas, bracelets, chemo pump bags and motivation t-shirts identify their specific disease yet bind us together as one, on the front line for another surge against our common enemy. As the nurse at the front calls “Anthony” and I stand up to go in to receive my treatment, shock appears in many of the others faces. Their thoughts: “For sure this “kid” is here to support one of his parents sitting next to him, not the patient himself.” My acknowledging smile to the role call confirms their shock but its intention is to put the room at ease and show my strength.
I am escorted into the infusion room where my chemo appointment can begin. I sit back and relax on my lazy boy recliner and prepare to be plugged into the matrix. My nurse Sheila enters the room with a big pretty smile as usual and greets the family and I. She is happy, positive but always concerned, everything I could ever ask for in a nurse. Before the treatment can start I am given a shot glass full of pills containing my anti-nausea medication. Combined with some water, I throw the shot back with one quick gulp, and reminisce of my college glory days. To begin the chemotherapy, I am hooked up to the first of the drugs in my FOLXFOX Avastin program: Avastin. As the medication drips into my body for 10 minutes I can feel the cool liquid enter into my chest and spread through my veins. After the last drip of Avastin enters my veins I am promptly disconnected and hooked up to two more drugs:Oxaliplatin (chemo drug) and Leucovorin (a calcium.) As the drugs slowly drip into my body over a two hour period, there really isn’t much I feel…. except constantly having to run to the bathroom to pee. With so much liquid flowing into my veins it is processed quickly by the liver and kidneys and quickly diverted to the bladder. I try to imagine that the liquid coming out of me is actually microscopic bits of the tumors, slowly draining the cancer out of my body. I will say it is definitely a humbling experience having to unplug and cart my chemo drips hung on an IV pole to and from the bathroom over and over again. Mass General is an amazing place, they have volunteers constantly walking by offering food, drinks and snacks as well as providing multiple amenities to make your time there very comfortable. When the drip bags have finally run dry Sheila returns and moves me onto the final and longest stage of my chemo cycle. A syringe or “push” of 5-FU is quickly connected to the port and injected before I am connected to my 5-FU pump and favorite fashion accessoryfor the next 46 hours. A wish of good luck, pat on the back and I am on my way home.
Generally speaking, the first 48 hours of chemo treatment are not too bad. Nausea is usually at a minimum as it is controlled by my anti-nausea medication. The only problem is that the anti-nausea drugs just so happens to be a constipating medication, and if you remember my post about the evil beavers, I am definitely giving them some material to build with! Because of this, cramps, bloating and nausea can be sudden, painful and exhausting. I have to carefully balance my diet, stool softeners, milk of magnesia and my medications to the correct level or I risk falling in one direction. In my case, both directions are bad. On one hand getting blocked is dangerous and can cause major complications to knock my treatments off track, on the other hand diarrhea is a major concern because my body may lose too much water and not properly digest a sufficient amount of nutrients to stay healthy. Hours 49-120 is when I really seem to feel the grunt of it. Some people say it feels like your coming down with the flu and I guess, I would have to agree with them. I’d say my body just feels off and really fatigued.
The drug Oxaliplatin causes some other really noticeable side effects in relation to how my senses respond, specifically to cold and pressure. I can not touch, drink or have any body part be exposed to an object below room temperature, as it causes what the doctors described as a “pins and needles” sensation. The colder the surface of the object the more painful the sensation is and the longer it lasts. I absentmindedly grabbed a bag of frozen vegetables the other day(about 5 days after treatment,) only to rip my hand back in searing pain expecting there to be a knife through my palm. Of course there was no knife, but the so called “pins and needles” may be a bit of an understatement and the sensation lasted for a while. This same feeling applies to eating and drinking, everything needs to be warm….that means warm water, warm salad, warm protein shakes, warm fruit, warm milk…. yuck, just the way I like it on a hot summer day! Other oxaliplatin side effects I can only describe as painful reactions to senses I haven’t used in a while. For example, when I eat, the first four or five bites feel like I am chewing on razor blades. When I read one of your awesome cards, emails or comments and my eyes start to water, the tears almost feel like acid oozing out of my tear ducts. (Please keep them coming by the way, the positive far outweighs the negatives.) And when I try to open a bottle, pull open a heavy window, or play rough with the dogs, any significant amount of pressure can send a shockwave through my fingers.
Every cycle the side effects will be a little more severe and last a little longer, but after the 5th day things usually start feeling better and life gets back to normal. I don’t know what you are all thinking, whether this sounds like heaven or hell. What I will tell you, is that to me…. it’s not that bad, I welcome the pain. Pain let’s you know you’re still fighting, it let’s you know you’re still alive. The side effects may make me feel shitty for a few days, but I can guarantee you it is not nearly as bad as what those little fuckers growing…..I mean, dying in my colon and liver are feeling.
Much Love – Teej
p.s. Feel free to send me any questions, comments or topics. They are great thought provokers and may be inspiration for my next blog.
So I want to let everyone know I am doing my best to keep you all informed on what is happening. At the same time, my writing is a therapeutic and emotional way to express myself, so the last thing I want to do is water down my blogs just to get content out there. So please be patient, I promise it will keep coming. I am feeling okay today, had some bouts of nausea from the chemo and tingling from the Oxaliplatin but it is nothing a funny movie, lunch with a good friend, and some meds can’t handle. But today I don’t really want to talk about chemo side effects. Today, I want to to talk about something a little more serious than my usual light hearted self, something a lot of people have been asking me about. I want to talk about the importance of paying attention to your body when it is asking for help. If I didn’t start listening, I might not of even had a chance to fight this thing.
Tuesday, May 31, 2011 I was relaxing at home with Amanda and the dogs after a beautiful and relaxing memorial day weekend. As I sat down on the couch a dull throbbing pain in my upper abdomen and some very uncomfortable bloating began to develop. Amanda was quick to notice my discomfort and asked what was wrong and I was equally quick to explain away the symptoms and that they were due to eating too much junk food all weekend long. (A benefit of having grandparents living down the cape is constant access to the best foods imaginable! Chocolate Chip Cookies, Ice Cream, Peanut M&M’s, the list goes on.) As the next couple days passed the bloating increased and the pain remained fairly constant. After staying awake much of Wednesday night with cramping I decided something must be wrong and that Thursday morning I would go check in at work and then take a quick trip to the emergency room at Emerson Hospital.
I arrived at an empty emergency room (“thank god” I thought) at about 9:45 am, I was very politely greeted by the nurse, questioned on my symptoms and ushered to a room where they would be in to see me shortly. The nurse who would be taking care of me came into the room and instantly recognized me. “I knew you as a baby, you look just like your father,” she said and proceeded to ask how my family was. After familiarities were exchanged, I briefly reviewed the past 26 years of my life that passed since Maureen last took care of me . She knew me well as a baby, I was a frequent visitor of Emerson being a 9 1/2 week old premi with breathing problems, seizures and attached to a heart monitor that lasted for about two years. I beat that challenge too.
“Well let me give some background on what’s been happening and then give you my more recent symptoms,” I said. “I have had heartburn going back to since I was in college. I have not had it for a few months now since I have been eating a healthier ‘slow carb diet’. I am thinking some of this could be due to a drastic change in diet this weekend with all the junk food I ate, but I figure, you’re better safe than sorry right?” She nodded and smiled in agreement. I continued “Recently I started getting cramps, pain and bloating in my upper abdomen to the point where it as been difficult to sleep at night.”
“Does the pain usually increase or feel better after eating?” She asked.
“To be perfectly honest, I am not sure, It kind of comes and goes and I can’t really figure out if it is related to when I eat. Also I have had some blood in my stool, mostly just on the toilet paper.”
She begins to ask “what color is the blood, bright red or ….”
“It is bright red, I figure it is just hemorrhoids or something similar as it has come and gone since I was in college,” I concluded quickly. I knew through plenty of reading already that darker or black blood is usually related to a problem high in your gastro-intestinal track like your esophagus or stomach. Maureen(my nurse) proceeded to draw about 6 vials of blood for multiple tests to check if anything could be identified as wrong in my body. The blood tests were as follows:Magnesium, CPK, Serum Amaylase, Lipase, Comprehensive Metabolic Panel (CMP) and a Complete Blood Count (CBC.)
The Doctor came in and performed some basic physical tests, pressing around my abdomen and asking if I was experiencing any pain. Soon after he said your blood tests came back and are 110% healthy. “I am going to discharge you with “gastritis” (an inflammation of the stomach,) recommend that you take Prilosec daily and have a follow up with a gastroenterologist as it is not common for someone of your age to have heartburn. If the symptoms improve over the next few days you should be good to go.”
Over the next two weeks my symptoms fluttered to better, quickly reversed back to bad and then dipped to worse. I tried to schedule an appointment with Middlesex Gastroenterology for as soon as possible. After a couple calls and being placed on their cancelation list the very polite assistants at the front desk slid me in for an appointment on Monday morning of June 20, 2011. After a similar procedure of questioning about symptoms, pressing and tapping on my abdomen the gastroenterologist scheduled me for an upper endoscomy or EGD for Wednesday June 22, 2011. An EGD is an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera (flexible endoscope) which is inserted down the throat .
On the day of the procedure, I was given some nice drugs and happily drifted to sleep until the EGD was completed. After my recovery the Dr. went on to explain some unusual but important news. It seems that I had an extremely inflamed stomach and had an onset of “Barret’s Esophagus.” Barrets is when the lining of your throat is damaged due to too much acid and stomach bile. The esophagus then builds up a tissue similar to that of your intestines to protect it from the acid. This is a good defense mechanism, however, it also makes your esophagus more susceptible to cancer. He said other than that everything looks ok, no signs of cancer and that he took some biopsies of the tissue to be safe.
My Biopsy Report and discharge instructions:
Now prepping for a Colonoscopy ninety-nine times out of a hundred is going to be worse than the procedure or the results. Normally I’d get it to the humor and the jokes of how gross it is, but that didn’t happen for me… I woke up to a pool of blood on my gurney and post-operation meeting where the Dr. bluntly stated… “We found a mass in your Colon. I can not tell if it cancerous or not but we performed biopsies. I will tell you that regardless of its make up there is a 90% chance you will have to have surgery to remove the mass. I have you scheduled for a CT Scan tomorrow morning at 8:00 am at Emerson Hospital.”
At that moment, all of the stories, the truths of past family medical history, the crutches I relied on to stay sane crumbled beneath me. The continued assurances that I was fine and that “what you feel” happens to me, or this person or that person too, disappeared. That night was the only time in this challenge that I was truly scared, I was terrified, I felt alone, I cried. I decided I needed to let some of my friends know what was going on, so I wrote:
Subject: Reason for being MIA Lately.
Incase I have been out of touch lately I just wanted to apologize, there has been a lot going on lately. You guys being my best friends I felt you should know, and I sort of needed to get it off my chest. After being in and out of the ER and hospital for the past month because of stomach problems I finally had a colonoscopy done today. They found a growth in my large intestine, but they have yet to determine whether it is cancerous or not but did take some biopsies to test. Because of the severity of the situation they have scheduled a cat scan for 8 am tomorrow morning to determine the size, depth, and if there are anymore in my body. Then I have an office visit follow up on Monday to I assume review the biopsy results and the next steps. So as of right now there is a 90% chance that I will have to have surgery to remove the growth regardless of the biopsy results. I am just praying it is not cancerous, and incase it is in fact colon cancer, then praying is is in very early stages. No need to call, I need some rest and I will let you guys know when I find out… just do me a favor and keep your fingers crossed.
Well, as a new day dawned, my email made its rounds and my prayers came crashing back to earth. The CAT scan revealed that not only was the growth cancerous, but it was stage IV cancer and spreading through my body. As I could see tears in the doctor eyes, trembling in my families hands, and fear in my friends voices, I found that the fear had left my body completely. I made a decision at that moment that I was going to live. I now knew what I had to do, and with knowledge came strength. With the emotion that I could see in my family and friends came determination to never let them down. And at that moment my journey to Beat the Challenge had begun. That’s when I wrote my first blog post: At the Starting Line.
I Love you All- Teej
p.s. I hope no one takes this blog the wrong way, there is no way anyone could have known, predicted or guessed that I would have what I have. A 28 year old with Stage IV Colon Cancer is extremely rare and it is not your fault or anybodies fault. I am only writing this so people can take my information and move forward with it. If you feel like something is wrong, go get it checked!!! It is a Doctor’s, Father’s, Mother’s, Daughter’s, Boyfriend’s, Girlfriend’s, Sister’s, Brother’s, Family’s job to make you feel better. So they will almost always say “Ive had something similar, i’m sure you will be fine.” It is in our nature to say that. But if you feel like something is wrong, the least you can do is get it checked. It may save your life some day, as it will save mine.
p.p.s. Want to know what my very first symptom was? My entire life I could never make myself burp, as a little kid my friends would all be burping everything from the ABC’s to National Anthem. I could drink an entire soda without one single belch. Obviously one would slip out once and a while, but it was not very common. Well three years ago, guess what? Something in my body started to form and all the sudden I started to burp….
By the way Pop Dukes looks exactly like Patrice Bergeron here in the feature imaged.
Two of the most significant changes in my life came in the second half of 2009. On July 14, I met my girlfriend Amanda on the steps of the Boston Public Library. As she turned the corner and came into view my heart skipped a beat, she was beautiful, I knew then and there that she was going to be the one I …….Well, before I get off track I think we’ll save that for another time, another blog or maybe someday ...
Happy Tuesday Everyone,
So as you can imagine, not only does Cancer cause you to drastically rethink what food you put in your body and how you treat it, having Cancer in your digestive organs makes it a bit more complicated. I decided on day one that I am going to win this challenge and obviously the best course of action would be to follow my childhood heroes motto of “knowing is half the battle.” Since that point I have been ...