Sag Harbor, Bagel Buoy for Passover

For passover and Autumn's Birthday we ventured out to the Hampton's to spend time with our Aunt Rose, presently battling ovarian cancer, and the rest of the Apollo / Chandler family. My mom joined us for the weeekend which I thought was very admirable as she really didn't know anyone there minus the few minutes she had met Autumn's family at our wedding! A three hour car ride and three ferries later, we finally made it. It was nice to get out of Boston see the family.

We celebrated passover and ate our obligatory Bagel Buoy bagels. Autumn's family owns and operates a bagel store in Sag Harbor so it's generally our duty consume as many bagels and nova and whitefish salad while we're there. Benson of course had a blast too. Funny side note, during the passover seder when we were asked to clean our hands we passsed around a bottle of calstat! We thought it was a nice modern adaptation, especially in light of the mix of health care providers and patients at the table.

There was cake and festivities throughout the weekend; though between Rose and I we mainly stayed close to home and got some good R&R time with the family.

Back on Track with Navolbine Round 5

I've began to better manage my expectations with radiation, knowing things get a little worse before they get a little better. Post one week of radiation to my cervical spine and shoulder area I feel a little stiff but every day feels a little better and I'm able to get more movement from both my neck and shoulder. This round I've also been able to avoid the sore throat feeling of last time which is a major plus.

This past weekend, on Friday, I was released from the hospital and we've had a nice stream of visitors which has been great on the morale.  I know I don't always mention everyone that visits or calls or keeps pushing me forward, but know who you are and that your company and encouragement is well needed.

Today blood counts were also sufficient to resume another round of Navolbine. It's not that we think Navolbine is the end all and be all chemotherapy treatments for my disease, but it's important to give each and every drug we encounter a full opportunity control this disease. With respects to effectiveness and statistics of drugs, it doesn't matter if a drug is 10% successful or 90% successful, rather it just matters that it does hold MY disease at bay.

This week also started the Chahuli exhibit at the MFA which is really amazing if you get a chance to come visit.

Healing Throat, More Blood, More Radiation

From the 21st floor, I've been resting my throat for the past couple of days and my strep throat times one billion has been down-classed to a strep throat times one thousand. Though I'm still consciously resting my throat, I've been slowly introducing soft foods to my diet: Cream of Wheat, Ensure, Jello and Ice Cream. By Sunday, after just three days of rest, I started to feel a huge improvement. I feel like a couple more days of rest should allow me to resume eating a wider range of foods.

Sunday also brought another blood infusion. I'm getting a little worried that I'm starting to crave these infusions. I pre-warn everyone to keep their distance from me around full moons. I can feel my incisors growing.

On Monday night I had an MRI scan of my shoulder to further investigate the pains I've been complaining about for the past month or so. Initially we scanned and consequently radiated the cervical spine. This time we took an MRI of the actual shoulder bones and rotator cuff.

Today we received the results: tumors growing throughout my shoulder bones with the recommendation of another round of radiation to my left shoulder. Things moved pretty fast this afternoon and not only were we able to schedule an appointment to plan the radiation treatment but we were also able to initiate the first treatment! The plan is to have five treatments to be completed by Saturday.

Funny side note, we were supposed to start treatment tomorrow and complete treatment by mid next week; however, my mom pulled out the Jewish card and asked if we could be finished before Passover.

P.S. No big surprise but we're skipping chemotherapy this week :)

Between Anderson Street and MGH

This past week the side effects of radiation started to set in, my red blood counts still didn't respond after chemotherapy and I had my quarterly infusion of zolmeda. These three elements combined made for a pretty painful week.

Radiation, though I may have mentioned is my treatment of choice, apparently has some wicked side effects when targeted at the cervical spine / neck area; I'm second guessing my treatment preferences. First and foremost, roughly after the 10th day of radiation a terrible sore throat sets in. For me this started about last Sunday and continued to escalate through the week. Think of a sore throat times a billion.

When I went for my regular Monday infusion my labs showed my blood counts to still be lower than we would have wanted so we continued with another modified dose of navolbine. The goal is to keep hitting this monster as hard as we can! It was decided because of my lowered blood counts and my decreased energy that I'd come in on Tuesday for a two unit blood transfusion which was generally uneventful despite living out my dreams as a vampire.

Wednesday was a bad day. I still had the neck and shoulder pains from before but now combined with a worsening sore throat and whatever vampire energy I was supposed to receive was late. Additionally the zolmeda infusion, the same medicine old ladies take to prevent from breaking their bones, leaves an achey flu-like feeling for a couple days. I could barely eat or swallow and spent the day on the couch trying to force feed anything down my throat. That night I ran a low grade fever and sweat through 4 layers of sheets! The next day I had scheduled appointments with all my doctors so I figured we'd sort it out in the morning.

On Thursday the doctor at my first appointment took one look at me and admitted me to the short stay infusion center for hydration and pain control. I was in pretty bad shape but they were able to pump me back up and release me to the care of Autumn and Benson by the end of the day. To be on the safe side we scheduled an appointment the next morning to receive more fluids.

And on Friday, still unable to talk or eat or swallow my well needed medicines, I was admitted back to my penthouse suite in the Phillips House. They actually put me in the same room I had last time!

Welcome to my life :). One day at a a time!