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.