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!