Part 5: Living Through Treatment

            When I started Chemotherapy I had treatment every two weeks. Each session would consist of infusions that lasted about 4 hours. Every other appointment my girlfriend would join me and we would meet with the Oncologist first, and then go for the infusion (she would leave after I saw the Dr.). There are numerous side effects from the Chemotherapy, and they vary depending on what kind of Chemo drugs you’re on, and you as an individual. Some come and stay, others come and go. I’ll only speak here of the side effects I’ve experienced, and how they’ve affected me.

            The first side effect- the one everyone knows about- is hair loss. The Chemo I started with did not make me lose my hair- it just thinned it. Though I did lose quite a bit, luckily I started with a full head of hair, so it didn’t look *that* bad. Oddly enough I lost all the hair on my calves, and outer part of both thighs. I’m currently off the drug that made my hair thin, and what hair has come back is silver- maybe there’s been some stress in my life lately? Nausea is next, and while I never actually threw up, it’s no picnic, but if you remember, they gave me drugs for that. There’s fatigue, especially in the days after treatment, which is very real, and at times, overwhelming. After the first couple of treatments, I spent most of Friday (after getting the pump removed) into Saturday exhausted, and sleeping a lot. There were also what my Primary Care Physician called “back side effects” where I vacillated between diarrhea and constipation; neither of which is very fun.

             The Oxaliplatin had a very unusual side effect- cold sensitivity. Drinking a cold liquid would make my throat close up and leave me gagging. Also, if I touched something cold it would feel like I was grabbing a live wire. Sometimes it was so intense that even making a sandwich with cold cuts hurt. Luckily this was not a constant side effect, but rather one that would get worse after treatment, and subside as I got farther away from treatment- only to come back when the next treatment was given. My fingernails and toenails have become fragile, tearing like paper even when trying something as simple as opening a pistachio. In addition to that, there’s numbness in my fingers that feels like my skin has been stretched too tight over my fingertips. It got so bad at one point there was a time I couldn’t even button up my own shirt. Along with this, the skin on my fingers would at times start to crack and peel and hurt. Yes, it seems like an oxymoron to say the fingers were both numb and hurt, but it happened.

              One side effect that took a few months to fully impact me was mouth sores. They prescribed a compound they call “Magic Mouthwash” but after a while the sores were so bad that didn’t come close to handling the pain. You know it’s bad when toothpaste hurts. Then they prescribed Lidocaine that I could carefully put on the sores (which were on the inside of my cheeks). I had to be careful to not get it on my tongue or it would go numb and swallowing could become a problem. Bleeding gums were another problem- flossing became almost non-existent- and when I brushed my teeth I would bleed. Not even switching to a soft child’s toothbrush made it better. I wake up every morning with blood, and the taste of blood in my mouth- a new low for “morning breath”. After treatment I would also get a bad taste in my mouth, like there was a thick coating on my tongue. One of the solutions for that was soda. Soda would temporarily get rid of the coating. Of course if I had mouth sores I wouldn’t drink the soda because it would hurt.

               The chemo would also make my nose run, and when I blew my nose, there would be blood. The steroids have also gave me insomnia for the first couple of days after treatment, as well as making my eyesight worse. The Dr. told me not to go get glasses, because when I get off the steroids my eyes will get better and I’d just have to get glasses all over again. It’s all so very frustrating, especially knowing that this is the new normal for me.

Part 4: Beginning Chemotherapy

The first thing you notice when you start Chemotherapy is the room(s) it’s in. There are chairs (recliners) that ring the room, with pillows on them wrapped in paper pillowcases, and I.V. poles next to them. If you’re not the first one there, there are people sitting in some of the chairs connected to I.V. bags, and even an occasional I.V. bottle hanging from the I.V. poles. The I.V.’s are connected through either their arm or a port in the chest. You have a sheet of paper that identifies you, and what the Oncologist has ordered for your treatment. You hand the paper to a nurse, and then pick an empty chair to sit in. You are understandably nervous and scared and anxious about what’s going to happen next.

Then one of the nurses comes over, introduces herself, and fills you in on what’s going to happen to you. First though, you need to watch a video on Chemotherapy, which to be honest you don’t really remember much of. It talks about dealing with side effects, getting help from family and friends, and how therapy can be useful in helping deal with Cancer and Chemotherapy. You have to sign that you’ve watched and understood the video before they’ll begin the treatment. You sign and your anxiety rises.

            Before the Chemotherapy starts, you have blood drawn to see if you are healthy enough to tolerate the drugs; this happens every time you have treatment. If you see the Oncologist, a Medical Assistant pricks your finger so everything is ready when it’s treatment time. If it’s a day with only treatment, they hook you up through the port, and take the blood that way (when you have treatment every two weeks- as I did- you see the oncologist every other visit- once a month). I personally prefer the port to the finger prick- it actually hurts less (most of the time), and you don’t feel like your hand’s a cow that they’re milking for blood. I will say that getting stabbed in the chest with a hollow needle that goes into a surgically implanted piece of medical equipment like the port is quite odd at first, but you do get used to it. It’s amazing the things you get used to. They have a lab on premises that processes the blood, and if everything checks out, they then put the Oncologist’s orders into their pharmacy (also on premises).

The pharmacy prepares all the drugs for every individual getting treatment as they are approved. All the bags and shots have your name and date of birth on them, which you have to verify as being yours before they begin. First come what is called “pre-meds”. For me it consisted of a bag of steroids, Decadron, (that helps the Chemo drugs work), and a shot of Aloxi, which is to help prevent nausea. Once the steroids are done- it takes about 20 minutes- then you start on the treatment. They started me with Oxaliplatin, which is a Chemo drug, and Leucovorin, which helps the Chemo work and protects the Kidneys. After that I had a shot (called a “push”) of Fluorouracil (also know as 5FU- best letters for a Chemo drug ever!). Once those are done, it’s a bag of Avastin, another Chemo drug. All together it takes about four hours. 

What being on Chemo looks like.

Once the bags and shots are finished, I was then hooked up to a pump that had more 5FU in it for 46 hours. I hate the pump- it’s clumsy, cumbersome and a walking reminder of what’s trying to kill you. They give you a fanny pack to carry it around in. I never wore a fanny pack when it was fashionable (if they every truly were) and I wasn’t going to start now. So I slung it over my shoulders when I was out, and put it on a table or desk when I was sitting or working. I did manage to forget about it, move the wrong way and pull it off what it was resting on more than a few times. I even ended up in the hospital once when the tube that carried the drug from the pump to my port sprung a leak. See, it’s okay for the drugs to be pumped into you, but they shouldn’t come into contact with your skin or you may have a problem. As a note, nothing bad happened due to the leak- the hospital didn’t have a tube the right size to replace the one that had the hole, so they disconnected the pump, and I went to the Oncologist in the morning where they replaced the tube and hooked me back up- Voila’! After several treatments, I got the best advice from one of the nurses about the pump- wear cargo pants. The pump fits in one of the pockets and becomes less cumbersome. So simple, and yet so genius. This was an enormous lift psychologically. The one good thing about the pump is that if it did not exist I would have had to be admitted to the hospital for the treatment from Wednesday to Friday. As it is, you go back to the office on Friday and have the pump removed. They flush it with saline and heparin to prevent clotting and then you’re free to go- until next time.

Part 3: Meeting the Dr.'s

When the appointment for the Surgeon was changed, it was a Friday. I honestly have no recollection of the weekend that followed. I’m sure there was crying, confusion, fear, and anger- there’s always anger after you’ve been told you have Cancer. So on Monday, my girlfriend and I went to see the surgeon. He said that we needed to see the Oncologist to get a better idea of what the best course of treatment was before talking about surgery. He did seem confident that the surgery would be a success, and give me the best chance for a longer life span than not having the surgery (at some point I will talk about how odd and unsettling it is to hear the words “ extend your life span” while in your 40’s). Still, we needed to see the Oncologist first. He asked us the name of the Oncologist we were seeing. When we told him, he said that if anyone in his family got Cancer, that’s who he would send them to. It’s always nice when you have one Dr. who can recommend another Dr. so highly- even before you meet him.

Two days later my girlfriend and I were in the Oncologist’s office. There’s a surreal quality to many of the things that have happened since my diagnosis. Walking into the Oncologists office for the first time is definitely one of those surreal moments that all to quickly become painfully real. Sitting in the waiting room, I felt like a cartoon cat who’s hanging from the ceiling by his claws. There’s paperwork to fill out as usual for a new Dr.; this time I (very wisely) made sure that my girlfriend was to be told anything medical that came up- I wasn’t making that mistake twice! Then my name was called and we were escorted to a room. The Dr.’s medical assistant asked some questions and then drew blood. Another thing you get used to, like it or not is that you become a human pin cushion- they draw enough blood to paint a Picasso.

Enter the Oncologist. Again, I have a hard time remembering exactly what happened in what order. It’s been a while, and there is so much information that was thrown at us, it was overwhelming- as if having Cancer isn’t overwhelming enough. I was told not only had the tumor on my colon spread to my liver, but there were multiple legions there. When I asked how many, he told me the amount doesn’t matter, only that there were multiple legions, and that I needed to get a biopsy of my liver to confirm the diagnosis. He said there was an 80% chance that the legions were Cancer- the biopsy would confirm that. He told me I also had to have a port surgically implanted (in my upper chest) to deliver the Chemotherapy I would need. The port is connected to my jugular vein, and it makes it easier to take blood, and have treatment every two weeks. He did tell us there was a small chance that the legions were just granuloma or something else.

I perked up a bit at that and told him that if there was a chance that it wasn’t Cancer I wanted to postpone implanting the port until the diagnosis was confirmed. I was desperately grasping at straws for any little indication that it might not be Cancer, so I could stop worrying that I was going to die. He explained to me that they were as sure as they could be that it was Cancer; the biopsy was just a confirmation, and I needed to get the port as soon as possible to start treatment (Chemotherapy). In addition, the blood work they did was only good for a limited amount of time before the surgery, and if that time ran out they would have to draw blood again. That would delay treatment, and he wanted to get started as soon as possible. I asked about surgery before Chemotherapy. He said since the liver had been compromised, and is a vital organ, that took precedence over surgically getting rid of the tumor in my colon. We were told if I had a good response to the Chemotherapy it would not only reduce the legions in my liver, but shrink the tumor in my colon as well. After a brief discussion with my girlfriend, I agreed to have the port implanted, and have the biopsy on the same day. All in all, the Oncologist spent about 90 minutes with us, explaining things and answering any and all questions we had in a very calm manner. One of the other things I do remember him saying was “Don’t look at the internet”. I was good with this for about six months, then I had a moment of weakness and started surfing the net. That’s a mistake I’ll detail in a future post, let’s just say I learned to always listen to my Oncologist. After he left, I was given the first 2 of many prescriptions- to deal with the side effects of my treatment. One prescription was for mild nausea, and one was for severe nausea- an ominous sign of things to come. I had the port surgically implanted and the biopsy done within a week (which I will also go into detail about in the future). Next up was the beginning of my Chemotherapy.

Interlude 1: The Colonoscopy

I know the last entry was pretty heavy, so I thought I’d take a break from the overall arch of my journey and lighten the mood with the story of my first Colonoscopy. Yes, the story of my first Colonoscopy is going to lighten the mood. Let’s start with what happened after the test…

After my Colonoscopy was finished they had to wake me up from the anesthesia. At the time of the test I had been up for over 24 hours, and the anesthesia was a welcome deep sleep for me. They asked me if I could dress myself, and I said sure. I’m still not sure how I managed to do that without injuring myself, because after the nurse guided me out to the car where my girlfriend waited, as I’ve mentioned previously, I couldn’t even fasten my own seatbelt. I tried to buckle up, flailing away. After more than a few misses, my girlfriend gently reached over and buckled me up. It was here that I had the “Why didn’t anyone tell me the results?” fiasco mentioned in my first post. As you may or may not know, they don’t release you after the Colonoscopy until you’ve passed gas. I don’t remember doing this, but my girlfriend tells me that I told her (which I also don’t remember) I was “blowing the place up” right after they finished, which I emphasized by verbally making the noises for her. Ah dignity, why hast thou forsaken me?

At this point I was famished so we decided to go get something to eat. We went to a diner I know, because I wanted corned beef hash and eggs. I lost 7 pounds during the prep for the Colonoscopy- time to get some of it back! Most of the diners there were senior citizens. In I walk with my girlfriend- who is several years younger than me. As we’re being seated, still feeling pretty happy from the anesthesia, I lean down and whisper to my girlfriend, “How does it feel to lower the average age in here to breathing?” My girlfriend has since told me that I was not whispering at all, that I said it in a Christian Bale inspired Batman voice- that carried. She says that more than one of the older ladies in the restaurant gave me death glares.

We order, and as we’re waiting for our food, I realize I have to urinate. So I get up and somehow manage to get myself to the bathroom. At this point I don’t trust myself to do that standing up, so I use one of the stalls. I then return to our table. After eating my first meal in 36 hours, I find that I have to urinate again- go figure. So back I go into the bathroom- I still don’t trust myself not to pee everywhere so I sit in a stall again. It’s when I’m done and washing my hands that I look around and see there are no urinals in the bathroom. That’s when it hits me- I’m in the Ladies Room- for the 2^nd time. Amazingly there were no women in either time, and no one came in while I was there. After we pay the check my girlfriend drives me home where I relax for the rest of the day.

As I mentioned, my Primary Care Physician told me to get a Colonoscopy after I was having problems with constipation. So, I went to my Gastroenterologist to have a consultation and we made an appointment for the procedure the next week at 7:30AM. At this point my biggest fear was the preparation for the Colonoscopy. We’ve all heard (and some have experienced) horror stories about the prep for a Colonoscopy. Drinking a gallon of foul tasting liquid, and then spending hours on the toilet while your body cleans itself out. I got lucky. My Dr. prescribed Prepopik. And while I’m not saying I want to drink this regularly, it is much easier than the older, more standard prep. Basically after you’ve been on a clear liquid diet for 24 hours (just like all other preps) you mix the Prepopik powder with 5 ounces of water and drink it at 5 PM. It tastes like stale Tang. You are then instructed to drink 5 8-ounce glasses of water in the next 5 hours. At 10PM you drink another 5 ounces of Prepopik, and have to drink 3 more 8-ounce glasses of water in the next three hours.

I didn’t know how long it would take for the Prepopik to kick in, so after about 45 minutes with just a bit of a grumbly stomach, I called the Dr. Before he could call back saying it takes about an hour for it to start, I had my first hint of the cleansing to come. If you haven’t done it, just think of it as someone turning on a faucet that comes out your ass. And it proceeded to do that off and on- but mostly on- until about 5:30 the next morning. Without getting too graphic, it was not a pleasant experience. Of course the tumor they would find during the test didn’t make things any easier. I’ve been told I’m full of shit, but after that long night, no more!

Part 2: The Diagnosis

To say that you’re never prepared to hear “You have Cancer” is an understatement to say the least. It’s been a while since I first heard those words, and my memory of what exactly happened at that moment is somewhat jumbled. I remember just about everything that happened, but not necessarily the order in which it happened; the brain is an amazing machine.

My girlfriend met me at the Dr.’s office to hear what I knew was going to be bad news- I just had no idea it was going to be as bad as it was.  When we got there, the Dr. told us that it was more than just a polyp with some cancer cells in it; that it had spread to my liver. We were dumbfounded and frozen. However my Dr. sprang into action and showed me that he was going to fight for me. He immediately gave me the name of the Oncologist he wanted me to see, and made an appointment for me the following Wednesday. I asked which surgeon I was going to see and he told me whichever could get me in the quickest and wanted to keep his business. He made an appointment for me with a surgeon, also on Wednesday (which was turning into the first of many long days of Doctor’s office visits). The next day his office called and said they had made an appointment with a different- but equally as good- surgeon for Monday. I have been very lucky in an unlucky situation in many ways- my Dr’s being excellent is the first I will mention.

As my Dr. was springing into action, I was still dumbfounded and frozen. My first thought was “I‘m going to die”, followed faster than I can type it by, “I don’t want to die.” The latter was a thought I would have, and still have repeatedly. It’s hard to express how you feel when someone tells you “You have Cancer.” You really do see that sentence being a sign that your life is over. You start thinking about all the things you wanted to do, all the things you thought you had time to do, and didn’t. You think of the people you love and how much it will hurt to leave them, and how much it will hurt them when you’re gone. We always assume tomorrow is a given. Cancer changes that in an instant. The funny thing is, outside of Cancer killing me, I still assume tomorrow is a given. I don’t worry about getting hit by a bus, or an asteroid, or any other of the myriad ways I could die; but everyday I have thoughts about Cancer killing me.

Part 1: I and Cancer or The Adventures of Me and My Semi-Colon .

This is the first part of my story about having Stage IV Colon Cancer- the overall arc of what has happened. I will be going back and detailing certain episodes at a later time. “The Adventures of Me and My Semi Colon” begin here…

At 45 years old “I” and “Cancer” are not words that go together in a sentence. Not that there’s ever a time when “I” and “Cancer” go together in a sentence, but at 45 they are incongruous to say the least. Be that as it may, in April 2014 I was forced to put those words together when I found out I have Cancer. Not just Cancer, but Stage Four Colon Cancer that had metastasized to my liver. Ironically a month earlier I had a physical exam, including blood work and was declared to be in good health.  

So how did I go from being in good health to having Caner? Constipation. I started having issues with constipation. I called my Primary Care Doctor. He put me on a stool softener/laxative and told me that I would need to eat more fiber. So I started taking the stool softener/laxative, and was lax on the fiber in my diet part (I’ve always been a picky eater). After a couple of weeks nothing was changing- in fact things were getting worse. I never knew how much not being able to poop can ruin your day, or days. Once again I called my Dr. and he asked me when my last Colonoscopy was. I told him, “I’m 45, I’ve never had a Colonoscopy”. He said, “You will now- make an appointment”. I called a Gastrointestinal Dr. and made the appointment. The day of the test came about a week and a half later (I’ll spare everyone the details on the preparation- for now). My girlfriend drove me there, and we went in without much of a care- figuring it would be Irritable Bowel Syndrome or something treatable like that. After the test was completed, I groggily awoke to a nurse and a printed report that had the word “tumor” on it- with a picture of a black mass. I don’t remember much, being that I was still feeling the effects of the drugs used to knock me out (I don’t know how I managed to get dressed without help, since when I got into the car I couldn’t even fasten my seatbelt). I do remember being told that they were sending a biopsy of the tumor out to a pathologist. On another note, I had foolishly (quite foolishly) told the Dr there was no one else to tell the results to. In my defense for this we weren’t expecting a tumor- and we had only been together for a few months- so why would she need to be told? Just a tip to anyone out there- if you’re in a relationship with someone, let the Dr. tell them what’s going on- for the rest of your health.

It took a week for the pathology to come back. A long week in what would be the first of many long weeks. My Primary Care Physician told me there were Cancer cells in the polyp they found (the tumor), and that they would remove it surgically, and while it would be an ordeal, it would be fine. He sent me for a CAT Scan of my pelvis and abdomen, which was “just routine”. So I had a CAT Scan with contrast the next day. Two days later the Dr.’s office calls at 3:38 PM, and tells me the Dr. wants to see me at 6:15 P.M. I was at work, and immediately my mind was racing. When you’re expecting test results, and the Dr. wants to see you, and see you that day- at 6:15 PM- you know you’re screwed. When I got there, that’s when I got the news that would change my life and the lives of those who care for me forever. Not only was there a tumor in my colon, but it had also metastasized to my liver. My Dr. then told me “Go home, have a drink, cry, get a good nights sleep, get up in the morning, get your shit together and get ready to fight.”