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.