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.