Good morning troops,
I am happy to report that I am finally starting to feel some of the recovery in this recovery process. My energy levels over the passed couple days have perked dramatically to let in a little strength, humor and positive attitude back into the mix. Liver/Gall bladder surgery recovery as I stated in my last blog is an exhausting, painful process. The pain meds also tamper significantly with your mood, perceptions and memories leaving reality as an intangible
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Welcome to the Flipside,
Recovering from liver and gall bladder surgery is a colorful blend of searing pain, delusional fatigue, and utter exhaustion, but you will find that the most delicious of fruits are often protected by a spiny, painful armor and the reward inside once reached is euphoric and well worth the laborious struggle to obtain it. Life is exactly that if appreciated, euphoric. The simple, beautiful, intricate things we overlook everyday can be so amazing if the time is
Everyone,
Great news! We met with TJ’s surgeon minutes ago to hear that TJ had the best of possible outcomes. Dr. Tanabe successfully removed 9 lesions/tumors from his liver leaving enough healthy liver so that he can continue to “Beat The Challenge”. We learned that we should expect some bumps along the road to recovery but again, the surgery, 6 1/2 hours long, was a success. Once again, we cannot thank everyone enough for the positive thoughts and prayers. At this moment we could not be any happier. Love, Tony, Jackie, Amanda and Families
Everyone,
Teej was wheeled off to surgery this morning at 6 AM telling us all and especially Amanda that he was going to be just fine and he would see us on the “flip side” of the procedure. We have to remind ourselves constantly that surgery is a positive path since it was not a consideration when he was first diagnosed back in July. Lacking any alternative cure (as of today) surgery is the only cure for colon cancer. Thanks to all of your positive thoughts, messages, emails, posts, masses, healing gifts of all kinds and prayers, he continues on “A Path to a Cure”. We will continue to keep TJ’s Army posted. Thanks. Love, Tony,Jackie and Amanda
Hi Everyone,
In less than 12 hours I head into the operating room for a nice little nap while my surgical team prepares for their end of this battle. At that moment, I get to to take my first vacation from this challenge and rest (until the fun times of the recovery room begin.) That moment is where I am asking you to begin…. I know so many of you have been fighting alongside me
Hey Guys and Gals,
I have successfully and healthfully made it through the first leg of what is turning out to to be a triathlon against cancer, my first six cycle’s of chemotherapy treatments are complete! My body reacted to the chemotherapy better than expected and has thus opened a new door as I enter the second leg of this challenge: surgery. I am scheduled for a complicated liver surgery on October 17th. A surgery that was not originally possible at the outset of my adventure my surgeon is planning on performing multiple types of liver resections to remove all eight of the tumors in my liver. Six of the tumors because of their size and location are “easier” to remove, while two sit fairly close to my portal vein and might be a little tricky to manipulate, but it can be done. The tumor bordering my portal vein should be easier to remove if the chemotherapy continued to shrink its size. Ironically enough, I am hoping that I didn’t shrink all those suckers to non-existence because to be “cured” of colon cancer they actually have to surgically remove the original tumor themselves, which is a little difficult to do if they are not there. My gall bladder will also be removed during the surgery, which is very common during liver resections. The surgery should last around five hours and I will be in recovery for about five hours (before anyone can see me,) so it’s going to be a long day for the family. I also will be in the hospital for about five to eight days and have a total recovery time of about six weeks. At that time I will be headed into surgery number two, Colon Surgery, but we will cross that bridge when we get there.,
My healing Bowl
I was given my first percentages of this journey, even though I didn’t ask for them. The mortality rate of this surgery is 1-2%. Meaning 1 to 2 people out of every 100 that go through a similar surgery do not make it out alive. What I told my family immediately after the surgeon left the room was, “Just so you guys know, that 1-2% does not apply to me.” It’s a similar statement to what I have been saying from the start. Those averages are of people all around the country, at varying ages, various stages of health, and at various hospitals. My body is young, healthy, and strong. My mind is strong, clear and more focused than it has ever been, and I completely believe and trust in my medical team. So that’s currently where I stand, I have some pre-operative tests on thursday which include an EKG, a chest x-ray, and some blood work but that’s about it until the big day. I have to arrive at the hospital Monday the 17th at 6am and then it’s go time. Positive thoughts bring positive results, as I dive head first into the second leg of this challenge I grow ever closer to the light at the end of the tunnel and all of your positive thoughts and prayers carry me to the finish line. Much Love – Teej p.s. I heard chicks dig scars, well, Amanda better start breaking out the boxing gloves because I am going to have a zipper like scar that travels from the base of my sternum, to my navel and bangs a sharp right over towards my kidney. (And that’s only going to be my second one.) I might have to break out my “blue steel” and give my modeling career a shot: http://www.colonclub.com/the-2012-colondar/ p.p.s. Don’t worry, I will have someone on update duty the day of surgery.
I cried for the first time Friday night… I’m not really sure why it happened, it may just have been the realization of how difficult this process is on everyone, including myself. It’s not all bravado, triumphs, and pats on the backs while people cheer from the sidelines. The serious moments are inescapable and frequent, no matter how focused on your goal you become, a figurative slap on the back of the head is bound to happen, jarring you suddenly off course as your mind panics and screams “Wake Up! You could die from this!” Well, Friday was sort of one of those moments. The overall tone of the meeting with my surgeon was a positive one, but the description of three possible surgery paths and their complications detailed the gravity of the situation.
Success in life is measured on such a broad scale, success in surgery is measured in millimeters and centimeters. For me and others with liver metastases the magic numbers are 1 cm and 20%. 1 cm is the margin of healthy liver surrounding the tumor that has to be removed alongside it, this margin is necessary to the success of the operation, to ensure that there are no remnants of cancer left behind. 20% is the amount of healthy liver that needs to remain for it to regenerate and me to survive, so with 8 tumors spread across my liver with a 1 centimeter margin surrounding everyone of them, some precious veins and arteries, space is a little hard to come by. I think that information was a hard enough slap to knock anybody off track. The good news that came at the end of the meeting sort of fluttered right past me, out the door, down the hall, and out the window…… The important thing with any challenge as our good pal Rocky would say: “it’s not about how hard you can hit, it’s about how hard you can get hit and keep moving forward.” Well, it’s not always easy getting that momentum back up. Despite a beautiful, fun filled walk with Amanda and the dogs by the Charles, I had trouble shaking it. Further research on the subject simply got me frustrated, fatigue slowly started to set in and then it happened… As a last ditch effort I found myself re-reading an email from another Stage IV Colon Cancer survivor out loud to Amanda when it started… tears welled up in my eyes, my chest started to heave, my voice became shaky. The further I read, the harder it became to hold back, until I couldn’t hold back any longer, I gasped for air and my body released. I cried hard, my body woven into Amanda’s arms for warmth and support, my head buried beneath her chin in attempt to hide my face. As I felt her shudder and the salty tears begin to drip down onto my head and combine with mine, I felt ashamed. My resolve had been broken, I let her down, I let my family down, I let my army down, I let myself down, I was supposed to be the strong one, the warrior!
Interestingly enough, as abruptly as it started, it left just as quickly. The bad energy pent up in my body was released like an opened flood gate and only the good remained. You will notice often times after a ferocious storm passes what follows is the most beautiful of days. Friday night was now more beautiful than ever as I felt enlightened, calmed and refocused. Miley even heightened the mood by furiously lapping up the salty tears off of our cheeks and getting us both to break out in laughter. Then I finished reading the remainder of the email out loud:
…after 5 years of finding no evidence of illness, this past February Dave Ryan shook my hand and said, “you’re cured, get out of here, call me in a year just to say hello.” TJ, if it can happen to me, it can happen to you, too. I won’t bs you, chemo sucks. I’d rather have surgery anytime (at least you’re unconscious) than go through chemo. But you’ll develop a routine, figure out your rhythms, manage your eating, working, living, and move through it. You’ll also end up hanging on every test result, every scan, some will be good, some not, but you’ll move through that, too. No one will really know what you’re going through other than you and possibly someone else who has been there before, so this is truly going to be a very personal, sometimes lonely, adventure. So, I hope you find my story inspiring. If you’d like to talk, I’d be happy to call you anytime, just give me your phone number. Or you could just shoot me an email and let me know how you’re doing. Either way, you’re gonna be okay — and in five years you’ll be writing an email to someone who’s just been diagnosed with cancer, and say, “let me tell you my story…”The most amazing thing was I didn’t start crying because of some tragic story, I started crying because of the triumph in it. I cried because I needed to let go of my pent up fears, trust in my doctors and get my rear in gear to beat this thing. I cried because I believed again in winning, I had regained my resolve. I cried because the good news that floated out the window earlier that day finally made its way over to the south end, came in my back door, and seeped into my brain. The tumors in my body are shrinking, in fact all of the liver metastases have shrunk by 1/3 to 1/2 of their original size! As a result, a plan is set in motion to do two more cycles of chemotherapy (minus the Avastin.) If the tumors continue to shrink further, the more real-estate there is for the surgeon to work with and the less complicated the surgery becomes. And surgery is slated for about 6-8 weeks from now, the second step in my Path to a Cure grows ever closer! Well, I am back up and moving forward with one goal in mind, shrink these tumors! No more slip ups on my diet and exercise, I will not miss a single regiment until I have kicked this disease to the curb (or petry dish, wherever they put those stupid things after they take em out.) So you better get ready Big C…..well, now I guess I can call you Medium C, but you better get ready, because I have a boatload of new tricks up my sleeve. Much Love – Teej p.s. Things in my daily and weekly regiment now include:
p.p.s For those in need of some anecdotal humor after a good cry. I had a nurse the other day say “Ok now change out of your clothes and leave your underwear and socks on” then she said something that escaped me as she walked out of the room. So She left, I changed, and eventually she returned with a knock on the door “Are you all set?” I say yes and she proceeds to walk into the room in shock. “I Guess you didn’t want to change into the gown” she says as I stand their in my boxer-briefs and socks. “Haha, nope I guess I’m all set. But honestly I didn’t hear you say that.” She leaves for me to finish changing.
Hey Everyone,
Time passes…but is it fleeting? I am currently on my 4th cycle of chemo therapy and it is so strange that almost 2 months have passed since I was told I had cancer. Speaking of which, do you know what I told my Dad when we were sitting in the Dr.’s office waiting for the diagnosis? “I do not want to know my chances, any percentages, or a time limit….because they do not apply to me, they will not apply to me, we will beat this thing no matter what.” To this day, I have still not asked or been told what they are because I do not want to know, because I am not a statistic, because I believe. Life does not have set rules, the young, healthy, and strong sometimes pass on, and the old, sickly, and weak sometimes live to see another day. There are miracles and there are tragedies that occur everyday that can never be explained. And then there is the common belief that “everything happens for a reason,” but does it really? I can’t believe that, because there are millions of horrific, indescribable events that simply shouldn’t have happened to so many innocent people. What I can say is that good does come from all evil, and in the end there is always peace. Every living thing has energy within them, energy that has all originated from the same source, and when your body dies your energy still goes on… because energy does not simply disappear, it is just transferred to something else…. I think it returns to that source. In a way that means we are all connected, we are all part of that same energy. This can hold true regardless of your religion, we all came from the same place and will all return to that place, back together again, as one. So shouldn’t we treat each other like we are one? Isn’t that the basis of most religions? To be good to one another?
I didn’t really plan on getting onto this subject, because it simply fuels anger, it is the cause of the most hatred and bloodshed since, well, mankind. But I guess you can’t really control stream of consciousness…. it just goes where the mind takes you. Organized religion does so good for so many, but has done so bad for so many as well. When the corrupt take control of it and skew beliefs so they can gain personal power, you know it is usually headed in the wrong direction. Our history is littered with atrocities in the name of god: The Inquisition, Aztec Human Sacrifices, Witch Trials, Roman Persecution of Christians, Thuggee Murders, The Crusades, The Holocaust, Islamic Jihads… the list goes on and on, and can go on, and will probably go on forever. I was raised Catholic, but I for sure do not believe in every single writing in the bible. So I just try to stick to the basics, the simple, and the simplest it can get for me is believing….and believing is the most Positive Energy there is. Interestingly enough, that is where organized religion can cause so much good, it brings a large community of people together to support one another, to be good to one another, to believe. It helps spread positive energy to millions.
So many of you, regardless of your specific religions have been believing and praying so hard for me and I can feel that positive energy fuel me towards my goals. I didn’t really want to say this because it sounds corny, but hey, stream of consciousness right? “It’s like the wind beneath my wings.” And I don’t mean angel wings! Well, keep the energy flowing because I just got some more great news yesterday morning. Carcinoembryonic Antigen (CEA) is a tumor marker in my blood and the original level at my time of diagnosis was 295.5, I just learned that before my third cycle of chemo started that level dropped like a stone to 171.0. A doctor would say this is not a definitive guide to my health, but it is a really good indication that things are heading in the right direction! I believe the cancer is leaving my body.
As for the next steps in the process, I have a CT scan on Wednesday, Sept 14th and a meeting on Thursday, Sept 15 with my Physician and Surgeon to review the scan and determine how the chemo has actually affected lesions in my body. The surgeon will then decide whether he wants me to continue further with the chemotherapy or if I should begin preparation for my surgeries (which would be in about a month.) There is a careful balance between chemotherapy and surgery: The chemo makes the surgery “less complicated” because it is intended to shrink the tumors and gives him more room to work with. But the chemo is also poisonous to my liver which makes liver surgery higher risk, if he was to remove too much of my liver and I did not have enough healthy liver left…. well, you get the gist. However, I trust their judgement as they are amazing doctors, I believe we are still on the “Path to a Cure,” and the light at the end of the tunnel grows brighter.
Much Love – Teej p.s. Time may be fleeting for some more than others…. so shouldn’t we help one another, make things easier and people happier? I visited the most amazing non profit organization yesterday called Christopher’s Haven. They provide housing to out of state/country families who bring their children to Mass General Hospital for cancer treatment. I can’t think of a more noble cause than providing comfort to children and their families during such a difficult time. It allows the kids to have the support system nearby that they desperately need, so righteously deserve, and that I am so lucky to already have. I know I have such a wonderful army with so much energy, maybe some of you could send some of it their way too?… Oh yea… My Family and I met the most adorable and personable little girl there, I believe she was turning 10* today. Happy Birthday Jasmine!
*Updated, Thank Ma for the correct age! Anti-Nausea meds makes me a bit loopy.
Hi Guys,
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!
Hi Everyone,
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. |
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