Round 4

Rob & I went into MSK yesterday for the juicing ceremony. They did it on the 4th floor, which is the regular chemo unit rather that the 7th floor where the study drugs are done. I had a new nurse and we had some discussion about the protocol so she could understand what was going on. Luckily, the physician’s assistant who handles the paperwork for the study came by to see me about signing a release form and he confirmed the dosing chart for her. The study documents are pretty detailed, so it’s not necessarily obvious to a new nurse where to start.

This nurse was a “traveling nurse” – a job I’ve never heard of before. She’s from Boston but spends 3 to 6 months in various other hospitals in other states filling in as a temp. She always temps in chemo wards. I had a good time teasing her about her strong Boston accent and we had a “wicked good” conversation.

I get unhooked on January 1 – something we are hoping Rob can do without us having to go back in. The temp chemo nurse said it would be better to go in and have Rob do it while being watched by a regular nurse. I think it’s straightforward enough that if Rob feel’s comfortable (she’s been shown how, took notes and has all the equipment), I think we’ll just do it. If we screw it up, we can shoot over to Morristown hospital in 5 minutes. Also, we have some friends who are nurses who might be willing to supervise.

Oh, and for those of you keeping notes for the big drug test - here’s some Percocet info for you. I learned that Percocet is actually a combination of Oxycodone and Acetaminophen. So, the dosage is given as two dosages. For example, I asked for the weakest dose which is 5mg Oxy/ 325mg Acetaminophen. You can get other scripts such as 10/500, etc if you need more. I wonder which sells the best on the black market? Probably the stongest version.

And now for the good news – when I was in the ER a few days ago for the cramps problem, I had a CT scan. The report came back and – besides showing no big issues – it stated that the mets in my liver are improving! This means the chemo is working!! Yeeehaa!!!

So I'm rolling on Round 4 - bring it on, baby!!

Happy New Year to you All!! BB

Holiday Happenings

Happy Holiday all! Thought I’d blog a little about the season. We have been enjoying having the kids home and doing the food and fun thing. I have, unfortunately, been still trying to shake some side effects.

For our family, we renewed our tradition from before our move to Virginia. On Christmas Eve, we went to St Peters for the early Christmas Mass. St. Peters in Morristown is a very large stone building built in the 1880s. It has a large classic interior similar to a cathedral – all stone, about three stories on the inside with large stain glass windows, candelabras and a large iron gate at the alter. It’s a beautiful place for holiday services and they did a very nice one (as usual). Afterwards, we got take out Chinese and met some friends at our house for a nice dinner and some good conversation.

On Christmas, we all opened stockings and gifts. My sister-in-law had a holiday party at her place in Riverdale which, unfortunately I couldn’t attend. My fatigue factor was pretty high and I stayed home and slept most of the day away. But Rob, the kids and my mother went and it sounded like a good time. I feel bad for not going (they even had a birthday cake for me) but I wouldn’t have lasted even an hour or two. They send home the cake, though, and it was excellent!

On my birthday, the 26th, I got some tickets to take my son to the Nets game. Feeling better than I did on Christmas day, I also snuck in a hike in the woods of about 2 miles. The snow in the forest was very pretty and it was great to get a little exercise. I had a growing issue with stomach cramps for about three days so I called the nurse at MSK to ask what to do. She told me I needed to go to the emergency room to see a doctor and get scanned. Evidently, one of my meds can sometimes cause some serious problems. I knew that if I did that, it would be a long visit and I would likely miss the Nets game. So, I decided to suck it up for a few hours and go to the game with David first and then go the hospital when I got home.

The cramps were pretty strong and came every 15 to 20 minutes. So, when I got back from the game, Rob brought me in. I got there about 11:30 and got the CT scan at about 3 am. Around 5, we determined that I didn’t have any of the serious issues, like a bowel perforation, so I asked the doctor to check me out. He seemed a bit reluctant but gave me a prescription for Percocet to help with the pain and I got out of there about 6 am. Still not entirely sure what the cause of the cramps is – it might be colitis, it could also be something simple like a touch of a stomach virus – but the cramps have eased up quite a bit. Maybe it’s the Percocet. I’ll review the scan and the event with my Oncologist when I go in for my next chemo treatment on Tuesday.

So that was our holiday. Some good tradition, some family gathering and a nice night at the game with my son. And as for my visit to the ER, it didn’t really interfere with the holiday spirit and, thankfully, the issue (whatever it is) isn’t serious. I hope you all had a great time over the holiday as well! BB

Blogging Action Shot!

Rob took a picture of me blogging just now so we can add this to the book of goofy holiday pictures. And that's a Christmas blanket I have over me, not a fleece house frock!

Round 3 Done for the Holidays!

Ok, so I have my energy back and can get caught up on writing. The week before last (week of the 8th) was an off week for me so it should have been a fairly high energy one. Unfortunately, I had a lot of carry over side effects so it wasn’t. In fact, I barely slept on two nights. Rob even ran out to the pharmacy for me one night at about 1 am. Thank God for her – I don’t know what I’d do without her. But eventually, things evened out.

Last week was a juicing week – on Tuesday as usual. The news from this visit is that I met with the oncologist and decided to go back out on disability. I have a very demanding, high stress job and, after four weeks and two rounds of chemo, I cannot see how I can do it effectively while on treatment. So, I am now officially back out on disability. I went into the office on Wednesday to work out some transition issues and share a few words with my co-workers.

On Thursday, I went to get unhooked at MSK because I needed some extra blood work done. Following my strategy of minimal meds, I decided to forgo my anti-nausea pill in the morning. This was a mistake. By the time I arrived, I was pretty green around the gills. My chemo nurse was awesome – getting a quick approval and a “super stat” order from the pharmacy for me. I then fell asleep for about an hour. When I awoke, the nurses were doing their secret Santa gifts. I am still just amazed at what a truly wonderful group they are – unbelievably cheerful and warm with all the patients and each other. So when they were done, I got unhooked and came home.

I will miss going into the City for work even though it’s a long commute and the City is really crowded with tourists this time of year. You really get the feel of the holidays. For example, there’s a Salvation Army stand at 7th and 32nd when I come out of Penn Station in the morning. The guy who rings the bell is a good singer and he sings these cabaret-style versions of Christmas Carols all morning. I guess he gets more donations that way or perhaps he just loves to sing. There’s also a bongo drummer who sets up on the downtown platform at the Rockefeller Center subway station on the evening commute. He adds an African rhythm and little whoops and calls to his holiday songs. He’s so good, I always want to skip a couple of trains listening but I’m usually hustling to make my NJ Transit train. There’s also a great model train exhibit complete with all of the cars, buildings and even a working drive-in theatre in the lobby of the CitiGroup building at 53rd and Lex (across from MSK) which is a little holiday jewel. It’s a great time to be in the City – even if the crowds are outrageous! Okay, those are my recommendations for a day in NYC on zero dollars!

I’m now pretty much through with the carry over from Round 3. Again, it was a little harder on the fatigue/nausea front than Round 2 but I expect to feel pretty good this week. I’m looking forward to a good week of cheer with family and friends. And if it weren’t so incredibly cold out there, I might even enjoy running those last minute errands!

Wishing you a joyful Holiday Season!! Stay Warm…BB

Still Kickin'

Sorry for not posting in a while. I got a couple of emails that folks had checked in but nothing since the 7th. Last week was an off-week but still a little rough on the side-effects. I juiced again on the 16th and was unplugged today so I'm a little beat. I will post more over the weekend when I feel better. Thanks to you all for checking in. Only one week to Christmas - I bet you're plenty busy. For friends outside of North Jersey - we're expecting 6 to 12 inches of snow tomorrow. It'll be our first real snowfall since returning from Virginia....

Round Two is in the Books

Well, I’ve come out of the fatigue/nausea portion of Round 2 and am starting to feel a bit more normal. I’m looking forward to the off-week and the potential for feeling more energetic and clear-headed.

Since I was working all week, I talked Robbie out of coming into the city for the unplugging and just walked over and had it done. I did run into a little bureaucracy trying to get the appointment confirmed (and I don’t have a firm date yet for Round 3). I’m learning that the thing that takes the most time in medicine is the scheduling (big surprise!). I had some more enhanced side effects with this round – hiccups, hand cramps and weakness (again a side effect of Oxaliplatin) and I’m starting to lose some hair.

I’m actually kind of upset about the hair loss. I know it’s pretty common, perhaps even “expected”, but it’s more than a vanity thing. First of all, I want to be considered a person first and a cancer patient second. If I lose my hair, it will likely be obvious that I’m doing chemo. I think that this may breed some preconceived notions in people I meet or who know about my health. They may assume I’m sicker than I am or that I’m incapable of doing things I may be perfectly able to do. I don’t want to appear sick and pitiful.

It’s also a bit of an invasion of privacy. Not that I’m hiding the fact that I have cancer, but I don’t want to announce it to the world. I had a business meeting last Friday and my health did not come up. Would that still be the case if I was sitting there half bald from chemo or wearing a hat?

And lastly, one of the hardest things to deal with in my situation is just trying to maintain a healthy outlook. When I look at myself in the mirror, I look very much the same as I did two months ago. That image looking back at me helps me to visualize a cancer-free future. When I start staring at the Brian version of Gollum from Lord of the Rings, how healthy will I feel then?

And another thing - I just got a really good haircut and I hate to see the barber’s work destroyed! (I could have saved the $19, too)

OK, I’m done with the rant. Perhaps I should try to tell myself that hair loss is a sign that the medicine is working and I should view it more as a (big shiny) sunrise than a sunset…Also, someone told me recently that their father went through the same treatment I’m on and his hair thinned, but didn’t completely fall out…maybe I’m just thinning…

In any event, I’m glad Round 2 is done. I hope you are all well and looking forward to a great holiday season….BB

Round 2 - Live on Location!

Thanks to this miracle of modern technology called the internet, I am now able to blog you, on location, from the Big Chemo Chair here on the 7th floor of 160 East 53rd Street! I just finished my regiment of standard chemicals and am hooked to the study drug – or, as I like to called it, the $10,000 bag of sugar-water (which it might be as this is a “double blind” study)!

In prep today, I met with a new doctor since Drs S and R were not here. I asked to see my pre-chemo CT scan so that I could better understand the report. My report continues to say “multiple lesions”. Being a numbers guy, I want the exact count! I want each one measured, mapped and given a party name! In lieu of this, they gave me a guided tour of the scan. I understand now why they didn’t do an exact count (although technically you could, if you wanted to put in the time). The bottom line is that it didn’t look that bad to me – there were a few noticeably bigger, darker lesions but the rest were really small fry. If the juice works, just seeing the bigger ones get smaller will make me feel like we’re on the right track. Frankly, it didn’t look that bad…I’m sure plenty of other people have it worse.

Once I got to the big chair, the chemo nurse said that we will be allowed to unhook this time without coming back in. She reviewed the procedure and the clever little needle device with Robbie so she’ll feel comfortable doing it. It may be more convenient for me to just have them do it since I’m working on Thursday but at least we now have the option. A curious thing about this nurse (same one as last time) – she’s very petite but when she’s hovering over you with all her needles and tubes, she feels like a giant. Only when I stand up do I realize that she’s under 5 feet tall!

Well, after this bag of placebo is drained, I’ll get hooked up to my baby bottle. Then, I have an hour wait before a quick ECG. Then I’m done with the big chair portion of round two!

Oh, this time, I asked for something to help me sleep tonight because the steroids they give on juicing day keep me awake. So, I have a new drug to add to Sara’s list – it’s called Zolpidem Tartrate. And Sara – I got another complimentary turkey sandwich today (with bacon)! Nothing lifts my spirits quite like bacon!

Hope you are all well!! BB