Newport and the MSPCA

All things considered, this has turned out to be great summer :)

This weekend both my dad and mom were in town so decided to go on an adventure to Newport, Rhode Island. We woke up early, packed up the car and set sail in our rental boat (rental car while mine is still in the shop) to the littlest tiniest state in America. We had a short pit stop at the MSPCA to drop off Benson to get neutered and then full steam ahead!

Oh Newport! The land of Cinnamon Bears, Shrinky Dinks and Harbor Cruises, or at least that was our version.

We got there and walked (I got wheeled) around the cute shops downtown, picking up candy and toys along the way and then headed to the harbor for lunch. We ate at this delicious restaurant called The Cooke House Restaurant and people watched the bustling harbor traffic. Apparently, though our intentions were to avoid summer traffic on the cape, this particular weekend in Newport was one of the busiest due to a folk music festival.

After lunch we boarded an open air ferry that took us on a narrated guided tour of the harbor. It was amazing and my dad got yelled at a hundred times for standing up and taking pictures. The air was cool and along the way we could hear the music festival off the shore.

Pretty beat we threw in the towel and decided to skip the Newport Mansion Tours, saving them for another visit and headed back home. We picked up Benson from his castration, and a tired Jeff and violated Benson retired to the couch.

Can you believe his discharge notes said "castration?" Now I feel bad!

Ballads from the Bedroom

A singer-songwriter friend of mine wrote a song titled "Breathe in hope, Breathe out love" inspired by my struggle. Derek is also battling a similar struggle, yeilding him house-bound, and has been recording a series called "Ballads from the Bedroom." I hope you enjoy this song and check out the series.

Hotel de Guyer & Forward Planning

The last week was a crazy week for my visiting schedule. During the week of chemo both my mother and mother-in-law were in town, then my mom's two sisters came in town and today as the aunts left, my sister and two nieces arrived. And then tomorrow my dad comes in town. The picture above is of Autumn and I at the dog park with Jessica and Samantha.

My doctors constantly ask me how I feel to qualitatively gauge the progress of my treatment. What I've noticed is that I have a little more pain after my chemo treatments but afterwards I feel a bit better. It's difficult to say whether feeling better now is an improvement from feeling better before and I have a difficult time differentiating my aches verse pains (I really have no idea what that means).

My doctor's NP told me that a tumor can become inflamed and then shrink down again after a dose of chemotherapy. She continued, "I like to believe that it's the chemo working specifically with that tumor." I thought that was nice because my back has been hurting me lately so I guess it's working :)

Next week I have my re-staging scans on Sunday and Monday to quantitatively evaluate my treatments. The NP explained that they should be able to see the tumor dying from the inside out. We're hoping to see that the cancer has stopped spreading which will be great news or better yet that the tumors are shrinking.

If everything looks good then we'll keep steering the course and if doesn't then we'll cook up a new cocktail for next round. We still have a large arsenal of available treatments and are optimistic on killing this disease.

My Dome!

So there it is! I know I've been promising pictures of my beautiful dome and now you have it. It's quite symmetric and I forgot I have a cool scar on the back of my head from when I was 21 and my brain had reached capacity so my head started growing a new brain. The doctors said it was cyst but I know the truth (and now you do).

I have no hair. It's actually growing back but because I kept demonstrating to people how my hair is falling out it's a little splotchy. I know it doesn't look bad, but it still provides me a constant reminder that I have cancer. I'd suggest anyone planning on getting cancer should shave their head a good year in advance to really grow into their bald head.

I'm generally doing okay. I've weened off all my medicines but my head still spins when I concentrate or stand up. Last night Autumn lent me her hair during dinner.

The Awakening

A couple days after the chemotherapy I "wake up." That's the easiest way to explain the feeling. You just wake up and open yourself to a new day.

Unfortunately it's kind of like Ground Hog Day: nausea, pills, shots, couch, sleep. But it's a new day and between the medicines and shots you can do anything you want (as long as it doesn't involve lifting 10 lbs, bending over or walking > 5 minutes... this is all due to the lesions on my back).

For the past couple of days I've been feeling a little better. Round 2 was definitely better than Round 1. I was discharged from the hospital on Thursday and started "waking up" after my Neulasta shot of on Saturday morning (Can you believe that one shot costs $3500.. we're getting our insurance money's worth this year!). Even the days before the awakening I was able to eat and be a little more than a slug on the couch.

I've had my two moms here which has been a great help and my aunts (mom's sisters) come tonight! We will feast :)

Over 25% Complete

I'm sitting here receiving my fifth treatment out of a total of 18 treatments (six rounds of three treatments). Things are going well with very little incident. We got a late start Tuesday evening so I didn't get much sleep but today they started 4 hours earlier so we should be done at 10:30 pm which should allow for a better night. Hopefully they can push back tomorrow's treatment so I can be discharged in the evening.

The nursing staff has started a new initiative on the floor to have daily social get togethers for all the families the survivors. It has been really enjoyable and a good way to socialize with people in our same situation. Would you believe there are two other people with liposarcomas in their legs on the floor? If sarcomas effect 0.8% of the population then the liposarcomas effect an even smaller fraction, and three of us are being treated here at the same time.

It was good to hear everybody's stories. Both survivors are at the end of their treatments and are doing very well, quoting a "99.9% elimination" of their tumors. I look forward to telling the same stories in a couple of months.

I'm finishing up the Iphosfamide now.. What a bitch! That one goes right to the head! Barf!

Ready for Round 2

The announcer starts, "Fighting out of the blue corner we have challenger Round and Myxoid Type Liposarcoma." The crowd returns a unanimous volley of discontent. "And fighting out the red corner we have the undefeated champion Jeffrey Guyer!" The crowd roars with cheer. "Let's get Ready to Rumble!"

And so Round 2 begins...

I'm not excited for the next coming days, not even a little... surprised? I don't think I'm supposed to be. Last round was really tough; I mean really tough. I could barely leave the couch and whenever I did I either fell back to sleep or wanted puke all over myself. Only now do I really feel as if I've regained my strength from last round and the doctors want to knock me down again. Grumble, grumble, grumble.

However, going into Round 2 I do feel I have a lot things working in my favor:

1. I am healed - Going into Round 1 I was beat up. I had a huge scar from my port along with very uncomfortable dressings on both my upper chest and neck. Additionally I was still healing from the multiple biopsies in my lower back and left calf.
   
2. The doctors know how to deliver the drugs - There should be no more "talking ragtime," and if there is it's because of other drugs I've requested.
   
3. I'm prepared - I know what to expect, and I have a better idea of what I need to do. I'm going to get out of bed, do a lot of walking around and spend much more time in the community areas. Last time laying in bed for three day drained all my energy.
4. I look the part - This weekend Autumn shaved my head. Pictures to follow soon.
   

Wish me luck!

Sailing the Charles

Today was a great day! Autumn and I joined the Community Boating Center down the street from our apartment. Its a great boathouse ~15 minute walk from our place that focuses on encouraging and educating the community about sailing. All membership proceeds go toward instructional classes and allow children to sail for $1.

Although I didn't actually get to sail I was able to get my solo boating license. Figure that one out. They had me rigging boats and answering obscure boating questions about points of sail and right of way. I sure fooled them!

Even though no "sailing" occurred it was nice to be outside and near the water. Many summers and practically my entire collegiate experience was spent on a boat. We signed up for the year which entitles us to approximately 364 more days of sailing. I'm pretty psyched.

The funny part is that even though I have ~10 years of sailing experience they wouldn't let me - 1.) take Autumn out on a boat or 2.) sail with a jib - until I take another test, though my dad and sisters may warn otherwise.

And so it Begins..

So it has started! My hair is officially falling out. I first noticed it last night as I was going to sleep. As I laid down on the pillow my hair fibers felt like daggers digging into my scalp. I had to first smooth the hairs which were to touch the pillow before I lay my head down.

Today our friend Heather Kapson came over to drop off cupcakes and in conversation I could pinch hair on the side of my head and pull it right out. There was no resistance, not even a slight tug back saying, "I like this haircut.. it looks goood!"

I don't know why it's the hair on your head that has to fall out. Why can't it be my back hair, my chest hair or the hairs that catch dingle-berries between my cheeks? Why can't my pubes fall out and spell the words "Porn Star?" But no, the hair on my head falls out.

In Memory of William...

This afternoon I got really sad. I don't know what it was. I was looking at pictures around me of my Dad and I on a family vacation when I was in high school and a goofy "baseball card" picture of me when I was 10. I remember being so carefree with not a worry in the world. I couldn't stop crying.

I stopped working and painted a picture of Portland Headlight to clear my mind. I took Autumn on a trip there last spring for her 30th Birthday. We brought Benson and stayed in a little Bed and Breakfast in the historic district of Portland, Maine. We walked around the town and ate at the most amazing restaurant with the most succulent lobster and scallops.

When Autumn came home from work she told me someone crashed into our car parked right in front of our apartment.

Then while talking on the phone with the insurance company we got a call from Autumn's Mom that Jim (for all intents and purposes my father-in-law) found his son dead, blue on the floor of the bathroom. William was supposed to come to visit us this next weekend. His computer screen was filled with sightseeing activities in Boston.

It's the worst news; a father finding his son blue in a bathroom.

I don't know why I decided to paint a picture of Portland Headlight but when I look at the lighthouse it gives me hope. Just as when sailors lost at sea find a lighthouse after a long evening in the darkness, it reminds me that the end of this tumultuous journey is near and smoother waters are ahead. The lighthouse reminds me to keep on looking forward for that next beacon of hope because it's there, just off in the distance.

Breathe in Hope, Breathe out Love.

First Day Back at Work

Today I went to work! It was really nice to feel "normal." I drove myself and had a great day catching up with my co-workers and outlining the next couple of weeks.

Integra has really been great to me, allowing me to keep my job (even though I'm still in my probationary period) and working with my treatment schedule. For the next couple of weeks they've allowed me to work in half-day increments, depending on my strength, and allowed me to work from home when commuting is overwhelming.

In the corporate world we live in it's great to know there's still heart and compassion at its foundation.

Chinatown and Movies

On Saturday Night the girls and I went to New Jumbo Seafood Restaurant in Chinatown. We ate like kings and then went to the movies.

I really like going to the movie theaters. I think the introduction video for AMC movies truly epitomizes why people go to the movies. It's a scene where vines grow around someone sitting in a movie theater seat and then the seat is lifted off the ground and thrown into a wonderland of disbelief and fantasy.

During the movie I forgot about everything: about the cancer, about the pains in my legs, about walking with a cane and giving myself daily shots. The movie was great too - The Karate Kid.

Dog Park, Walking 1 Mile

I've been sticking to the plan: walking further everyday, focusing on my physical therapy and getting healthier. Today we went for a big walk to the dog park in the Common then walked home via Charles Street, roughly 1 mile. It felt good to walk and, though I think I overdid it, walking a full mile was reassuring!

My mom left and she passed the baton to my sisters which has really been a treat. We've been having fun making puzzles and hanging out. The picture posted above is from the dog park in the Common.

Thanks to everyone who sent me advice on hemorrhoids. However, in my last posting I was actually asking for suggestions on how to take pain medication. I think only Zac (aka zBlikes) got the joke, and yes.. you're supposed to bump them; that's what the addicts do.

Going for another walk!

Couch-bound and Sedated

Of late, I've been spending a lot of my time couch-bound. I lie on my back, my wonderful wife and mother attend to my every need, and I can feel my body getting weak. Tonight I made a pledge to get up everyday and go for a walk so that one day I will be strong enough to go on a trip, wheelchair and cane free. (Though waking up the puppy will break my heart!)

I'm also so over pain killers. My stomach kills, my belly gurgles, I can't poop and when I do it's loose. I can't believe people get hooked on this shit! If only they knew! Maybe I'm doing this wrong.. any suggestions? Today I sent my mom to buy Preparation H.

Port Pictures & Banana Milkshakes

On Monday we took off the steri-strips from my port incisions. That felt great! For a week now it had felt like someone was pushing their thumb into the right side of the neck. You can imagine this feeling getting old pretty fast.

The incision seems to have healed nicely and now I have a cool scar to show off during the summer. If you look carefully at the picture below you can see the catheter which extends from the port starting in the center of the scar, traversing vertically over my collar bone and into my neck. At this point the catheter enters my jugular vein and curves downward until it terminates in the superior vena cava, just upstream of the right atrium of my heart. Pretty cool!

The past couple days have been filled with waves of clarity countered by waves of nausea / dizziness. I liken the feeling to a manic pendulum. I wake up in the morning and feel like running three miles and then I stand up and lie back down. I sit at my desk and shuffle paperwork and then I get really lightheaded and have to retire. Even so, everyday is getting a little bit better and everyday I'm getting a little bit stronger.

My appetite has changed. I really like plain foods, nothing too complicated. My mom has been keeping me going on banana milkshakes. Tea and chicken broth makes my mouth salivate. I've lost 10 pounds already so I'm at half my goal... haha.

Independence Day

On the Forth of July, in addition to an afternoon surprise visit from David Spiegel, my parents, Autumn, Benson and I rolled down Revere Street to watch the Boston Pops Fireworks Spectacular (what a name!). We found a little piece of grass along the Charles River and listened to the concert on the radio while we watched the synchronized spectacular.

It was really beautiful and we found primo seats, despite not having to tailgate at 4 am. The show was amazing and my dad took some great pictures (see above). Afterwards my dad rolled me up Beacon Hill (it's about a 25° grade) with Autumn and my Mom helping by pushing his back. I wish I had a picture of that!

It was nice to go out on the Fourth of July. This year was the first year in several that I can remember actually going out to see fireworks. In past years I was either moving or at somebody's house party, but not on the lawn watching fireworks.

One year in San Diego, Autumn and I were unloading my car and bringing the various items that cars tend collect back to my apartment: bike, groceries, dry cleaning. We got into the elevator with very full hands to start the journey up 2 flights to my home. As the door closed, it bumped Autumn's hand, already turning red from carrying heavy dry cleaning hangars, and knocked my apartment keys out of her grip. In slow motion the keys fell to the ground, balanced in the gap between the elevator and the floor, then fell through into the elevator shaft.

Appropriately armed with wire hangars, along with a very inebriated army cadet (San Diego remember), we fished the keys off the elevator shaft floor and saved the day. The cadet was so excited he yelled, "Let's go Celebrate! Mother F*#ker," ran out the door and Autumn and I could hear fireworks chasing his path.

ChemoCuts and Costco

Today I was feeling a bit better so we went out on a little family outing. First we cruised by SuperCuts for my ChemoCut and then we went to Costco; what else would I do with my parents?

The haircut felt great, but, really more than the haircut, the shower after the haircut was amazing. I've been very fatigued lately and even the act of rinsing shampoo through my "once long" hair was an arduous task. I feel better prepared for this fight with my new cut.

At Costco I was given an electric cart to shop around; though I must admit the electric carts are vastly more entertaining when inappropriately obtained. Regardless it was much better than hobbling around with my cane or being pushed around in my wheelchair, the other modes of transportation.

Samples didn't taste the same and I soon ended up retiring back to car.

It was still nice to get out of the house and get some fresh air. Today was a better day than yesterday!

Aftermath of Round One

For the past couple days I've been avoiding my computer, ipad, blackberry, saving me the embarrassment of having to explain why there are specks of digested food stuck in the crevices of my various devices. More than anything (and I've been trying to pin this down for awhile now), I have felt nauseous during the days following chemotherapy.

I sit up in bed and get nauseous. I get up to go to the restroom and get nauseous. I go upstairs and get nauseous. I sit at the kitchen table and get nauseous. We walk outside and I get nauseous. Everything smells different and makes me nauseous: my breath, kisses from my wife, hugs from my family.

I spoke to my Aunt Rose who is on her 6th Round of chemotherapy. She told me, "You know what they say about getting old? This shit ain't easy." Aunt Rose is so strong! I wonder if chemotherapy is easier to go through when you're older. When you're older more people are dependent on you; whereas when you're younger, you're still dependent on others. Kill the queen bee and the entire hive dies; kill a worker bee and, well, life goes on.

For me I have my Autumn and hopes that my frozen sperm will one day grow into a beautiful family. I also have me my friends and family, who may not directly depend on me, do worry about me very much. These are my dependents that keep me going.

Round 1 - Penthouse Suites, Talking Ragtime

I'm pleased to report that the MGH Onocology facilities encompass the advertised spa-like atmosphere (though i did have a little inside help with my expectations). The image above is the view out my penthouse suite window overlooking the Charles River. Additionally, today I got a reflexology foot massage from some nice lady and throughout the day I received visits from social workers, case managers and other supporting divisions to make my stay and my family's stay more comfortable. Everyone one here at MGH has been top notch and super helpful.

Chemotherapy, although failing my expectations as a Clockwork Orange nightmare, is definitely not a walk in the park. The nurses basically force feed poision into your body for 3-6 hours while you sit on a hospital bed slowly getting sicker and sicker. The regiment I'm on is called AIM (which is a combination of Adriamycin, Ifosfamide and Mesna). Adriamycin, commonly referred to as the "red devil," is so caustic to the skin that the nurses must wear long gowns and thick gloves; yet for some reason it's okay to be forced through my port. Ifosfamide is another weird drug that has been the bane of my existence here at MGH. The first night my Ifosfamide was delivered too fast and my doctor quoted me "talking ragtime." I was disoriented / confused, and had hallucinations, along with apparently saying weird things. Finally, Mesna is not a chemotherapy drug. Instead, Mesna is our friend and protects my bladder from developing inflammations from the poisons.

Chemotherapy has been a roller coaster. For a moment I feel fine and energetic, and then the next moment I feel completely powerless and zapped of all energy. I can feel the chemotherapy medicine attacking all the areas of my tumors. My back aches, my legs ache. I lie in bed helpless waiting for the medicine to finish attacking the foreign material. When it's all passed, I feel fine again and ready for the next obstacle. I guess that means it's working :)

Due to my talking ragtime on Day 1 and my low-grade fever Day 2, they're going to hold me overnight and discharge me tomorrow, even though i just finished receiving my third and final chemotherapy treatment for this cycle.

Round 1 is complete!