Week Five: Treatment is over....now what?

Even though treatment is over, it's going to take me a while to get back to my-healthy-self. I am so weak that I could barely get out of bed this morning. My white cells are pretty low and I need to spend the next several weeks recovering and building myself back up. I spend most of the day today in the hospital getting hydration, medicine and sleep. I was also in the hospital earlier this week with yet again strong chest pains - turns out I am allergic to the 5FU chemo. It's very uncommon for someone to be allergic to 5FU, but I am. Thankfully, my doctor feels I have had enough of the chemo to work it's magic combined with the radiation.

I am seeing my doctors on Monday afternoon to discuss next steps. My first thought, "Did it work?" There is a 90% cure rate with this type and stage of cancer, so I am very positive that it all worked, but it's the doubt and "what if" that lingers over you until you know for sure. There will be several tests to see if the treatment actually worked. I did see my surgeon that removed the tumor and he inspected the area and the tumor did not regrow, which is a great thing, and everything is healing nicely. So all good things.

Hopefully the worst is over, it's just rebuilding and recuperating. Mentally, I am a different person than I was prior to treatment. I feel more, I care more, I want to give more, I want to accomplish more, I want to take more time to enjoy life. Physically, I am weaker - but I know me and I will come back physically better than ever. Watch out world!

Joan

The American Dream. My family in the early 1940s.

No, this post is not about Joan Crawford. It's about another woman named Joan that I have built a friendship with during my treatments. My radiation appointments are bright and early in the morning (7am) and Joan is usually there in the waiting room with me and we briefly chat while we wait for our radiation treatments to start.

During my conversations with Joan, I have discovered she is an 82 year old woman that was recently diagnosed with breast cancer - the first in her family to develop cancer. One of the first questions Joan asked me was my age and when I told her that I was 40 years old, she quickly replied, "Oh! I thought you were much younger." I told her the same thing when she said she was 82. Joan is very quick, spry and extremely wise and I figured she was in her early 70. So I guess both Joan and I are aging well.

Today, there was a long wait in the waiting room, so Joan and I had much more time to chat. She told me that she refused to have any chemotherapy for her breast cancer. When I asked why, she told me, "I am 82 years old, it's not about the quantity of my life and how much longer I can live, it's about the quality of the remainder of my life ." She continued to tell me that she has had an amazing life and that she just wants the next few years of her life to be comfortable. She had a wonderful career, a loving husband (who passed away in November 2013), healthy children, a beautiful home, grandchildren and even two great-grandchildren. She lived the American Dream.

Joan asked me if I had any children. Any time anyone asked me if I have children, I say "yes." Obviously, Zachary is not my biological child, but I have been there with him since he was 10 months old and I consider him a part of me. She continued to ask me about my treatment and what I anticipated after treatment. I told her that if treatment works - then I will have regular checkups to make sure that cancer does not rear its ugly head again. If the treatment does not work, maybe I will do more treatment and maybe I won't. It all depends, although, I was clear that I will not have surgery to remove my affected area. Joan looked at me and said, "Think about that decision carefully. It may not be the most ideal way to live, but you are young and you can still accomplish many things in life." I am staying positive and strongly feel this treatment plan I am on will work, so I am trying not to think ahead, but I do have to start contemplating my options in case treatment does not work.

Joan and I then saw the 3-year-old patient we see every week being wheeled down the corridor to his radiation treatment with his young parents. Joan looked at me and said, "The nurses and doctors don't expect that young boy to live through treatment." We both kind of looked at each other and realized how lucky we both are. Joan for her 82 years of the American Dream and me for catching my cancer early and having a 90% chance of beating this. I also thought, if that young boy had the opportunity to live an extra few years or so he would be grateful for that time. I won't be hasty with my decisions on future treatment or surgery. I will rather be thankful for the option of life that has been given to me. 

"Staying positive is such important thing in life." Joan said to me. Words that I have lived by. Thank you Joan for your wisdom and insight. My eyes and mind are open more than ever.

Week Four: In the City

I am on the homeward stretch! My last day of treatment is Saturday, May 31st and I am counting down the days where I can start healing and building my strength up. This week was a quiet week, I had a lot of highs and lows where I would feel amazing one day and the next day I would feel like I was steamrolled by a mac truck. All in all, it was not a terrible week. My doctor is impressed at how healthy my red and white blood cell counts are staying and how my body is maintaining a strong stance during treatment. The doc really was worried about me becoming neutropenic (having an abnormally low level of white blood cells) during treatment and it looks like I am going to avoid that completely. Great news!

On Wednesday, I had to go into San Francisco for an appointment with the doctor who removed my tumor. Not a fun appointment at all when the doctor is fishing around in an area that is burnt to a crisp! Prior to going to see this doctor, I had not been in San Francisco for quite some time (considering I am usually in San Francisco Monday thru Friday for work) and it felt different for me being there. As Paul and I drove and walked around the city to my appointment, I had a heightened awareness to all the hustle and bustle going on. The construction, pedestrians, buses, homeless people screaming, horns, a Prius, bicyclists, people walking around aimlessly looking down at their cell phones, a Prius...all of it made me realize how I am starting to dislike city life.

I have done my share of living in two big cities, Boston and San Francisco, and during those times I truly enjoyed exploring the city and being a part of the chaos that comes along with city life. Living in a big city has given me a successful career, a wonderful relationship, an abundance of friends and a wealth of knowledge and experience that helped shape me into the person I am today. I am grateful for all the opportunities living in a big city has given me.

So why the bad taste in my mouth? Maybe it's because I am getting older or maybe I am just cranky from all the treatment or maybe I finally realize what is truly important to me in the short amount of time I have on this planet. It's probably a combination of all three. I want to slow down. I still have a good ten years of city living left in me. I can still slow down and live in a big city, it's all about how you manage your stress levels and how you let the factors of the city impact your attitude and behavior. For example, instead of yelling and getting worked up over the Prius that is driving in front of me at 2MPH, I can just smile and say "Oh you Prius drivers, you are improving your carbon footprint by driving a Hybrid car. How can I be mad at you for being a bad driver? I love you Prius drivers!" OR to the bicyclist that is driving like a maniac in the middle of the road cutting of cars thinking that they are a car themselves. "Oh hey you bicyclist that just flipped me off for being a car on the road. You know, I won't try to run you over for flipping me off and spitting on my car because you are also doing your part to save the environment by not driving a car and riding your bike instead. I hope you have a wonderful day bicyclist! MUAH!" See, I totally can manage my stress levels and stay cheerful and upbeat living in a big city - I got this!

I do know this...once Zachary is off to college (roughly 7-8 years from now),  I want to move far away from the city. I want peace. I want to live in a house surrounded by land with a big porch that Paul and I can drink lemonade on and grow old together watching the sun disappear behind the trees. I want to hear the crickets sing me a lullaby as I drift off to sleep at night. I want to run barefoot through a field of freshly cut grass. I want Zachary to come visit us with his family and watch our grandchildren run around and laugh. These are things I look forward to.

Yes, I know, I am cranky:)

Week Three: Ga Ga Goo Goo

Zuzu watching over me as I sleep.

This week I found myself shopping in the "Baby Needs" aisle at the local CVS. Yup, my top three necessities this week are fruit punch flavored pedialyte, unscented baby wipes and 'No More Tears' Johnson & Johnson bubble bath. These, my friends, are essentials in life right now for this 40-year old man. I almost, ALMOST said fuck it and contemplated buying a package of Pampers, but I am not that far gone yet mentally - maybe next week. Poor Paul had to listen to me moan and complain this week that I think I saw him secretly looking for a pacifier to shut me up. God love Paul, he has been a saint through all this.

My doctor wasn't joking when he said that the radiation side effects would kick in during week three. If I am not passed out on the couch from exhaustion then I am chained to the toilet getting sick or in a lukewarm bath seeking relief. The pharmacist gave me lotion for my skin that is usually given to 3rd degree burn victims - this is how raw and sensitive my skin is right now. I cannot imagine two-and-a-half more weeks of radiation to my skin/body. Yikes!

I can see my ribs again; it's been several years since I could count every rib on my upper body. I have lost eleven pounds since I started treatment and while I was looking at my evolving torso in the mirror the other day, Zachary came into the room to ask me a question. He looked at the chemo port that is under my skin, above my right pectoral muscle, and he just said - "THAT is nasty! It looks like an alien is trying to come out of you body, like from that movie Aliens." Poor kid, I probably scarred him for life after seeing that. It's really not that bad, well, maybe it is. I am looking forward to having it removed once it's confirmed that the cancer is gone, but my doctor told me that it could possibly stay in my body for up to a full year. Well, I guess I won't be doing any beauty pageants this year.

Between Paul, Zachary, visits from friends and our cats - there is plenty of love and laughs keeping my spirits up at home. My cats sense something is wrong and won't leave my side. Zuzu sleeps with me on the couch and watches over me, licking my forehead and face to remind me that she is right by my side. I swear this cat is smarter than most dogs I have encountered. I have never had an animal like this - she is extremely in tune with the goings-on in our household.

Even though this post is a bit snarky, I am staying very positive about everything. I am more than halfway through treatment and I am feeling pretty confident that this treatment plan is going to work. When all is said and done this will be an experience that I can share with other people that are diagnosed with this type of cancer. I am motivated more than ever to push myself to try some motivational/inspirational speaking as a side gig in the future. 

Week Two - This Boy is on Fire

I purposely scheduled all my radiation appointments at 7am, bright and early, so I had to get out of bed each morning, shower and do my daily routine. It would be so easy for me to throw the pillows over my head and drift away under the covers into a land of make believe. Although I am a very positive and optimistic person, I am human and I do go to a place that can be negative or depressing at times - this week was a struggle not to fall into that rut.

The radiation is starting to impact my energy. Early in the week, I walked home from the radiation treatments, which is only a mile away from our home, and by the time I reached the front door - I was out of breath and exhausted. Even when I do my yoga stretches each day I find that I cannot stretch as long, do many pushups or planks anymore - my strength is waining. I also had a high fever and I was pretty delusional as I felt my entire body inside and out was on fire. I got up during the wee hours of the night to find myself fumbling around the bedroom not knowing where I was and waking Paul up to the loud thud of me walking into our closet doors. I was so out of it from the fever I didn't know where I was!

The radiation is also started to discolor my skin in my pelvic area. It's turning this dark color and it's getting pretty sensitive to the point where I have to retire any and all jeans that hug my body. Let the full time sweat pants wearing season commence! Last time I admitted to wearing sweat pants in public on Facebook, I had slew of people appalled that I would leave the house dressed in such garb. I am sure people will think I have given up walking around wearing sweat pants in public, but it's for much needed comfort. Judge away!

As the week went on, I started to feel surprisingly great and back to feeling like myself. Calm before the storm I say. My doctor said starting in week three the radiation was really going to hit me. I did find I was "allergic" to something else this week - all slow songs by Billy Joel. I am not sure if it's the tone of his voice or just me being overly emotional, but anytime I heard his songs on my playlist, I started to cry like a baby. No more Billy Joel for me the next several weeks.

All in all, a good week. Thankfully no hospital visits -- although Billy Joel almost sent me there and my little Asian nurse, Rose, would have been in for a surprise if she were to pull the covers down to look at my junk again, she would not be saying "pretty" anymore with this skin discoloration!

Marijuana

My dad and me circa 1976 and 2010.

The first time I ever smoked pot was when I was 35 years old. Late bloomer in that area I guess, but  with moving to San Francisco in 2007 - it was only a matter of time before I finally experienced it. My aversion to marijuana stems all the way back to when I was a child and my mother put the fear of doing drugs into me, amongst other things like telling me to wear sunscreen everyday if I want to have nice skin. Thank you mom about the sunscreen, it has paid off as I enter my 40s.

Back to the marijuana! As long as I can remember, my father has always smoked pot. It's something I grew accustom to seeing my dad do every time I was around him as a child and an adult. As a child, I thought what my dad was doing was wrong and horrible and that he was a drug addict. I spent the majority of my teen and early adulthood resenting my dad for being a pot head - so far to the point that from the ages of seventeen to age 34, I may have saw my dad a total of 5-6 times. A big part of the strain with my dad was my own misconceptions of marijuana.

Thankfully, I reconciled with my dad a few years ago and the past is in the past, but I do have to say how sorry I am that I held on to so much resentment for my dad all those years pertaining to marijuana. We broke the ice when I smoked pot with my dad for the first time a few years ago. My dad cheered and exclaimed, "I have been waiting for this moment all my life!" It was a great memory with my dad and I look forward to the next time we both get high together and laugh our asses off.

My doctor gave me a medical marijuana card a few weeks ago for pain and today is the day I am cashing in on it. I have been having bone pain and a burning sensation throughout my body from the radiation and Paul and I went to a local medical marijuana dispensary a mile from our house to check it out. I had no idea that you can get different kinds of marijuana that make you lazy, laugh, hungry, relive pain AND you don't have to smoke it. You can eat it in the form of a cookie, chocolate, lollipop, gummy bear, gum drop...you name it. So I bought a few edibles to get me through the next several weeks. I will let you know if it takes away the pain and hey, who knows, maybe it will be something I actually enjoy doing now and then. (I can hear my dad cheering all the way from Massachusetts:)

Learn to Chew

This past weekend I have been having a hard time eating anything. Every time I take a bite of something my body just wants to throw it back up and when I do manage to swallow something I develop these horribly violent hiccups. Did you know there is medication for hiccups? Neither did I. It slightly helps - still shocked there is a pill for hiccups. What an amazing little world we live in.

I have always been a super fast eater. When we all sit down to eat, Paul and Zach will barely take two bites of their food and I am getting up from the table already finished with my meal washing my dish and on to the next thing. I inhale my food. Paul always asks me, "Where is your food?" when he looks over at me while he is eating. "I am already done." Ever since I was a kid, I would just shovel my food in and I was off and running. We have to eat to survive, it's something we have to do and I find it boring as hell.

But now that I have to chew every bite like 20-30 time before swallowing it, I get why people sit and savor there food and take the appropriate time needed to eat. It tastes so much better and it relaxes the soul and makes for better digestion. Also, my diet has been turned upside down and I can only eat a handful of items, so this has given me a new outlook on food and how creative I can be with making bland meals exciting.

Now you may be wondering why do I need to eat slow during cancer treatment? Why does my diet change? First off, I have zero to little of an appetite from the chemo - it makes you not want to eat a damn thing. Secondly, the radiation is localized to my pelvis/stomach area and this radiation is so strong it is literally burning my insides - which means the longer I go through radiation - the more sensitive my digestive track is. We all know the foods/drinks that mess with our stomach (spicy foods, hard veggies, fruits, nuts, fried foods, coffee, dairy etc.) - all those things I need to stay away from. The more bland and soft the food is the better.

The positive of all this...once I get through treatment and over cancer, I am going to savor my food. I am going to sit, breath, chew, breath, eat and enjoy:)

My Journey Through Week One of Cancer Treatment

I was dreading this day. I had been doing my normal routine of working and day-today activities and trying to lead a regular life without letting the thought of treatment fill my head. I slept horribly the night before treatment  just thinking about all the unknowns. Will it hurt? Will the treatment work? Will I change physically? Will I lose myself? Since I was diagnosed with stage one colorectal cancer on April 1st 2014, I have had all sorts of questions and concerns as to how this is going to change me - inside and out. Preparing myself for the worst and hoping for the best.

                                              

I arrived at the treatment center at 7am all prepared to start my treatment plan consisting of five days a week of radiation, roughly 20 minute sessions, for five weeks. Chemotherapy is for a total of eight days, first four days during week one and last four days during final treatment week. Many have asked why this treatment is pretty intense and extensive if it's only stage one cancer? Good question. This cancer is inside my rectum and has spread in that local area. Most people diagnosed with anything above stage one rectal cancer need to have that area of their body removed - think of it like a breast or a testicle. If a lump is found in one of those regions, many times that piece of your body is removed. If you removed your lower intestine - you will be shitting into a bag for the rest of your life. No thank you.

Radiation

The morning radiation treatments have been surprisingly peaceful so far. I meet with a tall older gentleman named, Tom. He reminds me of the actor James Cromwell from the second season of American Horror Story, but much kinder of course. I strip down bare ass and get into this large radiation contraption. I have a special mold for my lower body that keeps me in the same position every time I receive the radiation treatment. I have to cover my junk with bubble wrap so I don't damage my goods. I am pretty sure I will not be contributing to any baby making sessions in the future - but it's still nice to keep that area safe. So far, I have not experienced any side effects yet, but I have only gone through one week of treatment - I am sure next week will be different.

Chemotherapy

Chemotherapy was a different story. A few weeks ago I had a port installed into my chest. This port is where they feed all the chemo, hydration liquids and draw your blood work from so you don't have a million needles going into your arms and look like a strung out drug addict. I really did not want the port...they had to surgically put this quarter-sized plastic piece into my chest that connects to the main artery in my neck. Gross. Anyway, I did it. I will have a battle scar to talk about someday.

Day One Chemo - Monday

The first day of chemo had me at the hospital for six hours. They made sure I was all hooked up and properly hydrated and had all the proper medications in my body before injecting me with a huge syringe of mitomycin. It was pretty intense having this big needle of what is basically poison being injected into my chest. I cried, not out of fear but sadness. I thought about how well I have taken care of my body through the years and here I am injecting my body with chemicals that will take a number on my body and organs. Paul was next to me the entire time and I also thought of his mother, Ruthie. I remember when she was going through cancer treatment and I could not imagine what she was going through. I drew on her memory for strength and encouragement that I would get through this. Throughout the entire chemo process I had a wonderful nurse named Laura, she was truly amazing explaining everything along the way with a great smile and enough humor weaved in to keep me smiling.

After the mitomycin was distributed into my body, it was now time to hook me up to the the chemo pouch. This pouch is filled with a substance called Fluorouracil (5-FU) and would be connected to me for four full days - a slow drip of chemotherapy going though my body continuously. The medicine is stored in a handy little pouch, it looks like a European man-purse - I could easily pull that off!

At home the first night, I was feeling pretty good. I even felt well enough to meet with our neighbors to talk about common areas of property we own together and ways to improve them. I hit the sack around 10pm with my new man purse of chemo by my side, ready for a good nights sleep.

Day Two Chemo - Tuesday

At 1am, I was awoken by this horrible taste. I shot out of bed and ran into the bathroom spitting out this awful liquid. It tasted like lysol and bleach. I then started to throw up this vile chemical profusely - it was coming out of my nose and my mouth and my eyes were burning. What was happening to me!!?

I was screaming and crying and fell to the bathroom floor. Sadly, our cats litter box was in the bathroom I chose to get sick in and I started to get even MORE sick from the smell of that. I think this is when the spirit of Joan Crawford found its way into me because I started to yell "Get this fucking cat box out of here!!!" And then I proceeded to grab cleanser with a rag and start scrubbing the bathroom floor while vomiting. Classic moment. God bless Paul Johnson for dealing with me during this episode and cleaning the bathroom.

Once that little psychotic episode was over, I just lied on the floor lifeless next to the toilet. The cold tile against my skin soothed me as I started to drift to sleep. The next morning, I went back to the treatment center bright and early for my radiation and I ran into one of my nurses. I told her about my vomiting episode and she quickly told me that I should get some fluids into my body and that I was probably pretty dehydrated. I was placed into a nice private room for a few hours to receive hydration intravenously. I was also given a massive dose of nausea medication called EMEND that would help me with my nausea for a full three days. 

Day Three  - Wednesday

I was feeling pretty good as I headed to my morning treatment routines after a decent nights sleep. Paul is managing my medication at home, which is keeping my nausea under control. After my radiation early morning treatment, I decided to get a few hours of fluids just to make sure I was hydrated. I had a new nurse working with me who was less attentive but still accommodating. She asked if I wanted more nausea medication and I told her I was still feeling ok, but asked her if she thought I should have some more. She decided to give me more EMEND. Once she started to give me the dose of EMEND, I started to get a sharp pain in my chest....my arms were tingling...my throat was closing up...my jaw was tight.....

The next think I know I was surrounded by several nurses and a few EMT's. They were giving me an EKG. An EKG?!? Was I having a heart attack?!?? I looked around the room, everything seemed to be moving in slow motion. I could see Paul's face, white as a sheet and sweating. What was happening. I was placed on a gurney and wheeled out of the treatment center into an ambulance. I was still having heavy chest pains in the ambulance and the EMT driver ripped open my hospital gown to give me another EKG. The tiny shred of sex drive in my body did rear its head as this hot EMT ripped open my gown and looked down at my with his sexy face. But that was a fleeting moment as I realized I was probably having a heart attack and thinking about sex at this time would only make that worse.

I arrived at the hospital and the team of doctor's and nurses were unsure of my condition since my EKG was showing up abnormal. They decided to conduct a cardiac catheterization to determine if I had any blocked arteries. I was awake for the whole thing watching them look into my arteries and my heart to make sure all areas were clear. I was happy to report to Paul that I do not have the grinch sized heart he thinks I do:) All I kept thinking was...What is happening to me????? I just wanted to be done. I wanted to rip the chemo from my chest and just run away from this all. No more! I am done. Please!

Day Four - Thursday

Paul and my best friend Ryan had been with me the night before and and the nurses moved me to my own private room for what was a decent amount of sleep that night. They both kept reminding me that I will get through this and I am stronger than I know.

I awoke at 5am to the same horrible chest pains and numbness - screaming for the nurse. The nurse came into my room injecting me with morphine. I started to gag at the horrid smell of morphine. And then it immediately made me nauseous as I felt it go through my veins. For this first time in a long time, I felt I was losing control of who I am. I was losing me to all the pain, to all the drugs. That person inside me started to poke me and tell me not it give in, don't lose yourself.

Later that day, I was brought down to an x-ray room to check my chest for blood clots. Negative. Everyone was perplexed to what was happening to me. Eventually, it was determined that I was given an overdose and/or had an allergic reaction to the EMEND nausea medication.  I was still told I had to stay another night in the hospital incase I had another episode. Carrie came to visit me and I was so happy to see her. Paul, Carrie and I just talked about the entire series of events and the craziness of it all. Carrie also brought a new photo of Zachary from his baseball team. I propped it up next to my bedside that night as I feel asleep to remind myself that I can get through this and that I will not lose myself in this if I keep my mind strong.

Day Five - Friday

I woke up feeling great and had a full nights sleep without a chest episode. Sadly, the chemo pump that I am hooked up to stopped working on Thursday morning, so I was only given about 2/3 of the chemo dose. I was a bit worried that I would have to redo the entire week since I did not finish all of it.

One of the nurses I had in the hospital,  tiny Asian woman named Rose, came in to check my vitals and change my dressings  As she removed the dressing near my groin from the cardiac catheterization, she yanked down my drawers, looked at my junk and just yelled "Pretty!" I laughed so hard. Hilarious. She also said I was going home today so I was thrilled. Paul came to pick me up so we could make our way out of the hospital and to the treatment center. I was so happy to just see Paul's face. 

At the treatment center, I was happy to hear that my oncologist said the amount of chemo that I was administered should be enough and I can continue the chemo in week five. I then had to get a shot called Neulasta to keep my white blood cells healthy. This Neulasta shot cost me $1,200 - out of my own pocket. I was told a few weeks prior to getting treatment that I would need the shot and that my insurance would not pay for it, so I bought it. Turns out that my insurance DOES cover it and I did not have to pay $1,200 for it....not happy. So the treatment place was once again in a flutter as to why I was told this information by them and why I had to incur this cost. Let's hope I get my $1,200 back). 

Week One - over and out!