Back to Life

I am finally starting to feel like myself again. Earlier last week I was getting pretty depressed that I was never going to heal and the pain would never go away. Thankfully, this past weekend started showing signs of recovery. The pain is not as constant and my skin is starting to heal nicely. Yahoo!

Form this point on, I am going to focus on getting myself not only back to normal, but better than I was prior to my cancer diagnosis. I am reintroducing healthy foods and getting rid of foods that I enjoyed before that were garbage. I am starting to reintroduce the gym ever so slowly starting with just walking on a treadmill and then hopefully advancing back to yoga, weights and intense cardio. Lastly, I want to give back more by either volunteering within the Bay Area and/or by doing some motivational or inspirational type speaking engagements. I want to be a better person after this experience.

I will not be posting as often in this blog, but I will update when I have some news about my cancer diagnosis and improvements with my overall health.

My goal is to be in tip top shape by mid-July!

Week Six: Recovery

With treatment being complete, this was my first week to focus on recovering and getting myself back on track. This week has been one of the hardest weeks so far. I think I am healing. My brain wants me to heal faster than my body actually is. In my mind I want to get out of the house, go to the gym, go swimming, dance, do a cartwheel...all of these things I want to do, but I can't right now. Six weeks of being pretty much homebound, undergoing treatment, healing, being in pain..all of it is catching up to me. Funny, I think most people, myself included, just thought - oh treatment is over it's all uphill from here, well yes and no. 

My skin in my pelvic and butt regions are badly burned..so much so that doing a #1 or a #2 is an ordeal that leaves me crying and on the floor and/or bed rolling around in pain. I don't even want to eat or drink because I know I'll have to face going to the bathroom eventually. It feels like my insides are burned - they are burned. It's a feeling that is pretty unbearable and up until now, I have been able to relieve the pain with a hot bath, some meds and some medical marijuana. None of those things are really reliving the pain anymore - so I am just doing what I can to get through it. It's 2am and I cannot sleep because it's just too uncomfortable.

Earlier in the week, I had to do something to start feeling "normal" again. I showered, shaved, did my hair, dressed in actual clothes to just make myself feel good. The shirt I was wearing was pretty wrinkled so I though I could just steam the shirt while I was wearing it - I have done this plenty of times in the past...well, this time, of course I burnt myself with the iron - big old burn on my chest. As if I need another fucking burn! Ah, yes, at least I am starting to do things like my old self again - stupid things like ironing my shirt while I am wearing it. Classic!

And then the other night I was trying to navigate from bedroom to bathroom in the dark with no glasses on. I was moving at a pretty good clip and then BAM! - I stub my toe on the leg of a chair. I mean at this point I just have to laugh at myself - I think my body is unsure how to process any new pain I inflict on myself. I am a walking disaster right now. I truly feel if I jumped into a volcano right now, I wouldn't even feel the molten hot lava on my skin. I am becoming immune to pain.

Even though all of this is going on - I am still staying positive. Paul has been urging me to go for walks down our street and I have been going as much as I can. It's nice to feel the sun on my skin, breath fresh air and get some exercise. It's uncomfortable to walk a lengthy distance, but I have been pushing myself to just walk a mile or less down the street. Next week will be a better week for sure - it has to be.

Paul Johnson

This picture was taken in 2004 in Boston, around the time we first started dating.
The photo was taken by our dear friend, Patrick Lentz.

In 2004, I moved to the South End of Boston a few weeks prior to my 30th birthday. I was highly into my career and moved specifically to this apartment because work was about five blocks down the street. My rent was $500 bucks a month and I was making just under $40K a year, and at the time, I was pretty proud of that. I had been working at this ad agency, Arnold Worldwide, for about 2 years and it was my first salary job ever.

2004 was also the year that I decided to focus on myself. First, I started eating better, going to the gym and I was also single. I was single for the first time ever in my life and it felt great to take the time to figure out who I was and what I wanted in life. Christ, at that point I had dyed my hair so many times that I didn't even know what my hair color was. So, not only did I set out to discover myself, I also decided to shave all my hair off. My natural hair color is light brown with some gray mixed in and, just for your information, I have not died my hair since 2009.

Back to 2004 --- even though I was only paying $500.00 a month for rent and making $40K a year, I was poor as hell. After paying bills, buying food and enjoying an occasional night out on the town, I barely had any money left. My roommates at the time, Brian and Aaron, decided that we weren't going to pay for Wifi if we didn't have to. We were stealing a spotty connection from a coffee house not too far from our apartment, but we had noticed during the summer there was a much stronger connection that was open to the public, so we jumped on it and saved the $20 - $30 bucks a month.

By September 2004, I was ready to start dating again. I was feeling confident about myself for the first time in my life and had been single for just about a full year. After a few unsuccessful attempts at meeting quality men in bars, I decided to try online dating. Looking back, I think I was overly aggressive, a bit forward and a tad crazy. I believe the headline on my profile was "I am the type of man most men want..but shouldn't have!" Good lord, it's amazing ANYONE in their right mind responded to my profile with that dramatic, asinine headline...but someone did. 

I received a chat invitation from a sporty looking man - I remember his profile photo -- a handsome guy dressed in a softball uniform, with a hat and nice smile. After several back and forth conversations I enjoyed his witty banter and sense of humor and decided to keep the conversation going - it even got to the point where I sent some racy photos of myself and was a bit annoyed that I didn't get any in return. I mean, everyone has naked photos of themselves, right? Nope. And that is where my aggression would get the best of me. I was too forward and I was putting too much of myself out there (in the wrong way), but I guess in this case - the guy was amused by that.

After a long online conversation with this guy, we decided we were going to meet up for a drink or possibly a date. We had already established we both lived in the South End of Boston, but we reveled exactly where we lived and we were surprised that we both lived on the same street (Tremont Street) - very cool - it's a big street so I became curious as to which end of the street he lived on. To my astonishment, he said he was at 595 Tremont....I was at 593 Tremont. My jaw dropped at the odds of going into an online chat room and connecting with my next door neighbor. Not only was he my next door neighbor, but after diving further into it, he was actually on the other side of the brick wall in my apartment. I think we were both a bit freaked out by all this and the conversation ended with - let's hang out sometime.

A week or so had passed since the conversation with my next door neighbor and we had not reconnected after discovering the uncanny coincidence. It was the weekend and I had spent a few hours in the gym and what I usually did back then was work out and then stop and get a large pizza and a pint of ice cream and eat it all by myself - so comforting! As I was walking home with pizza and ice cream in hand - I saw this guy coming out of the apartment next to mine - it was him! Shit. We made eye contact as we approached each other and said hello and formally introduced ourselves. He said his name was Paul, but everyone calls him PJ ( I never once called him PJ). I think he was amused at my appearance and the fact that I had just finished working out and was about to devour some junk food. He was headed to a local bar called Fritz to watch a baseball game. I was clueless to the fact that he was super excited about the Red Sox being in the playoffs against the Yankees and the potential of them heading to the World Series. I knew very little about baseball and had no clue the Red Sox were possibly headed to the World Series. As we all know - the Red Sox had one of the biggest comebacks in MLB history and won the 2004 World Series - I like to think that I was the lucky charm that brought that win for Paul:-)

After our meeting on the street, we parted ways and said 'see ya around sometime' and that was that. I headed up to my apartment and jumped in the shower before eating my junk food. While I was in the shower, the doorbell rang a few times and I ignored it until my roommate said it was some guy for me. I ran downstairs and it was Paul from next door. He told me the bar was too crowded and couldn't get in to watch the baseball game and he was going to just watch it at his apartment and asked if I wanted to join him. My first thought was "no" because I really hated watching sports, but what else did I have to do? So I ran up and got my pizza and headed over to his place.

My first thoughts of Paul were how intelligent he was, far more intelligent than the majority of the men I had met - I was intimidated by that. I also found his features most unique - I had never see a cute little nose like that on a grown man before. Since I was intimidated by him, I was nervous to talk too much about myself but then thought 'what do I have to lose' and just spilled the beans about who I was and where I came from. We could not be more opposite - I was a high school dropout and never went to college, Paul excelled at both high school and college. I was an open book and I noticed awe in Paul's face. Paul eventually told me he had never met someone so honest and open before upon meeting someone and that he was taken back by it. Our conversation lasted for hours and at some point during all of our chatter, it hit me. I was told by my friend Dan, that someday I would met someone when I least expected it  - when I was not looking for it. Paul was the one. That day I knew in my gut that Paul would be the person I would spend the rest of my life with.

Flash forward to 2014...this October will be our ten year anniversary together. Who would have thought? All these years I have been with Paul has changed my life. Paul was a hard ass with me early on in our relationship. He set me straight with my drinking problem, he helped me get over my previous abusive relationship and he always encouraged me to push myself. I can honestly say that if it were not for Paul's love and support over the years I would not be where I am today.  Paul has always been my biggest fan and my biggest cheerleader - cheering me on as I continued to accomplish my goals year after year.

When I was diagnosed with cancer a few months back, it brought our relationship to a new level. I felt I had finally hit a wall. 2013 was the best year of my life and then 2014 rolls in and I am beat down with a cancer diagnosis. These past few months have been some of the most challenging times for me and Paul has been there every step of the way... seeing the tears, hearing my cries, making me laugh, seeing me at my worst and assuring me it will be alright. I am so, so very thankful that fate brought us together in 2004 - it was meant to be. Thank you Paul - I love you.

Words that Paul sent me in an email that I read everyday that keep my spirits up and that continue to keep me positive... 

This is going to make us both stronger and it's going to make us both appreciate everything that life has in store for us that much more. I can just picture it now (when we are older): sitting on a porch in a rocking chair, drinking lemonade... with my Menks by my side. I'll always be by your side, Menks!' (FYI - Menks is my nickname).

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!

Random Acts of Kindness

I received the email below from a woman that I met only once this past Thanksgiving. I am touched by her story, her openness and her kindness. Truly inspiring.

Dear Neil, 

I want to tell you what I did yesterday.  I woke up, ate breakfast, got my kids ready for school and out the door.  It was hectic, there was much yelling and cajoling.  After drop-offs, I went for a long run in the woods.  This is an activity I discovered that I love about six months ago.  I met a friend for lunch after and we chatted for too long so I had to hustle to pick up the kids, get home, make dinner, put everyone to bed, and finally collapse into bed myself.  

The importance of that day lies in the absolute mundaneness of it.  When I was first diagnosed with breast cancerfive years ago next month, my first thought was I don't want to die.  My next thought was, if I live, what will my life be like?  Will I ever just have an ordinary day untainted by cancer ever again?  I am happy to tell you the answer is yes.  I can honestly say that cancer is not a dominant topic or thought.  It does not rule everything.  

Did I mention that I had a double mastectomy with delayed reconstruction?  That means we are talking at least five surgeries.  One of the surgeries left me with no feeling in the back of my upper right arm.  I also had chemo and because of my risk for ovarian cancer I had some surgery in 2012 and will need additional surgery in the future.  My point to this is that the cancer wasn't simple by any means and yet, yesterday was so boring and normal.  Despite my obvious physical deformities after the cancer it simply doesn't come up.  My body is still very much mine and I have become quite comfortable in it even with all the design changes it has undergone.  

One more thing, two years after I was diagnosed with breast, my two year old daughter was diagnosed with brain cancer. Yeah, we make tumors.  She had surgery, chemo, bone marrow transplants....the full monty.  Yesterday, I spent more time worrying about whether she will ever learn to wipe her ass after she poops (seriously, I know) then if she will die of cancer.  

Cancer is scary, no doubt.  Cancer is hard, no doubt.  I don't wish it on anyone, but, when it comes, know it isn't everything.  Tincture of time is powerful medicine.  The love and support of friends, families, and frankly total strangers is incredibly powerful in healing.  

I wish you a lifetime of normal days.  You are not alone.  We are with you.  

Love,

LP

Cry

Today I have a pre-op appointment with my doctor to go over all the details of the surgery. Paul is coming with me so we can both hear all the details together. We left the house this morning with Zachary and I made sure he had everything he needed for his day -- snacks, homework, ironed clothes, breakfast and out the door we all went.

As we were driving to drop Zach off at school, I realized that I forgot to bring what I needed for the doctor. I wrote a list of questions for the doctor, paperwork for home to fill out and my insurance card -  all forgotten at home. I have always been somewhat forgetful with certain things, but recently it has been taken to a new level. My mind is in another place.

Paul and I arrived at the doctors office and my stomach was in knots. We were going to talk about all the details of my condition and the surgery. A face-to-face conversation with the doctor. Paul and I were a bit early so we sat at a coffee shop while I tried to remember all my questions for the doctor:

What are the risks?
What is the recovery time?
How large is the tumor?
How are they taking it out?
What are my diet restrictions prior and after surgery?
What are the possible outcomes?

The doctor went into much detail about how the tumor came to be and how it will be removed. So much detail that I could see Paul squirming in his chair out of the corner of my eye. It reminded me of the story he told me when Carrie was giving birth to Zach and Paul needed juice and cookies so he would not pass out.

My doctor was blunt and straight to the point. He is taking this tumor out because he things it's cancerous. He has been a doctor for 42 years and has seen many things, I trust his opinions and decisions. I did not move a muscle as he told me about the surgery and what the outcome will most likely be. I started at him without blinking, taking it all in - breathing in and out.

After the conversation, getting blood drawn and getting prescriptions, Paul and I walked through the rain and just sat in the car. It was all a lot to take in. We sat there and Paul asked what I was feeling. My first thoughts....I am not ready to die. There is so much I want to do..so much. I want to see Zachary grow into a young man, graduate from school, get married, have children. I want to see more of the world. I want to grow old with Paul. I don't want to die.

For the first time since I heard the news, I cried. I just sat there in the car with the rain coming down around me and Paul holding my hand. I cried and it felt good. I asked Paul how he was feeling. He didn't want to tell me, but he said "he felt bad for me." We both cried and hugged and I told him that the past 10 years of my life with him have been the best I could have ever asked for. I have an amazing life and I don't want it to end.

Learning to Relax

Paul and I had a trip to Vegas planned for months now and it happened to fall on the weekend after getting the news. Originally, I wanted to cancel the trip - but after talking with Paul, friends and coworkers, it made sense for me to get away for the weekend and just relax. Relaxing is something I am not good at...

I am always on the go, always have been, trying to accomplish as much as I can in a day. My day usually consists of getting up early and making sure everyone has what they need when they leave the house, getting to work around 8am and making sure I have everything planned for my day and that I am prepared for all the meetings I face on a daily basis. After work, depending on the day, I either go home and cook/clean, then try to fit in some other activity - stained glass project, painting a room, building a website, planting in the garden...I just go non-stop until I collapse from exhaustion.

Over the weekend in Vegas, I did just chill. Getting a nice spa treatment and truly relaxing an pampering myself (thank you work!), eating what I wanted not worrying about gaining weight and also gambling a little bit. Paul and I had a great time together and I did escape reality for a short time. Until it was ready to go home and the reality of the week was upon me.

When I got home today, I started cleaning the house and doing anything I could do to keep busy. After several household chores, I decided to go shopping. I stopped to get groceries, pet supplies and flowers to plant. Running around like a nut from place to place trying to get as much accomplished as I could in a day. Same routine, but driving home I realized this race against time has to stop...I have to slow down and relax. I need to stop trying to make up for lost time and stop pushing myself and my body to the limit each day.

Living in a Snow Globe

I have always been in tune with my body - knowing every mole, every freckle, every curve and shape that makes up who I am. So when I noticed a lump in my butt area regions back in late November of 2013, I was alarmed at what it could be. I decided "why bother with it over the holidays" and I made an appointment to see my primary care doctor in January.

The holidays came and went, but the lump remained. I went to go see my doctor in January and he gave me a full physical including a prostate exam. He examined the lump further and decided that he could not diagnose what it was. He referred me to a specialist, but the specialist was not available until March.

A month after my physical, in late February, I turned 40 years old. I had accomplished everything I had set out to do in my 30's and then some - grow and succeed at my job, buy a home, travel, have great friends, get married, get back into my stained glass. The 30s truly were an amazing ten years. I spent my 40th birthday with three of my favorite people in the world - no big party, no fancy trips, no big celebrations - just a quiet birthday with people I love.

March finally arrived and I kind of forgot about the lump. I was keeping busy with work and also getting ready to officially launch my stained glass business - a little something to do on the side. When I went to go see the specialist, I expected him to tell me it was nothing and that I would continue on with life. If you have never had a rectal exam, let me tell ya - it's not fun. I had two guys staring at my asshole for an hour, poking and prodding around. Get your mind out of the gutter! It was not that kind of poking and prodding. The doctor did a biopsy and told me that the lump could be one of two things: 1. an infection 2. a tumor.

All I heard was the word "tumor" and my body went numb. He proceeded to tell me that he should know in a few days the results of the biopsy. I left his office feeling a bit jarred at the possibilities of this lump being a tumor. In the back of my mind, I always knew that I had to be aware of cancer. My grandfather (my father's father) died at the age of 60 of colon cancer and my father has had polyps on his colon removed at the age of 50. I didn't think I would face the possibility of cancer at age 40....but cancer does not age discriminate.

A few days after my biopsy, the doctor called me back to tell me the lump is a tumor and that I would need to have it surgically removed as soon as possible. He explained that they could not determine whether the tumor is cancerous or not until they remove it and dissect it. Surgery? Cancer? He continued to speak through the phone explaining everything in detail, but I didn't hear much more. I could only hear my heart beating faster and my breathing increase rapidly. Surgery would be a next week...

I was at work when I heard the news. I was numb, filled with emotion, confusion, questions and too many thoughts. Thankfully, I have one of the best bosses and coworkers I could every ask for. I talked through my situation with my boss and a few fellow coworkers. Given the demands of my job, I could not see myself truly being "there" for everything I needed to do. We decided it was best I take the time off until after the surgery and the prognosis.

As I was leaving work today, it felt like my life was turned upside down, all shook up. like a snow globe. Someone was just shaking and shaking and shaking...