Been Busy!

Well, it’s been a while since I’ve blogged but that’s just because I’ve been busy. I juiced yesterday – just the usual routine other than that during the downtime when they mixed the meds, I met a colleague and got caught up a little at work. This past non-juicing week was pretty good from an energy perspective. I still need my big middle-of-the-day nap but I have been able to get some things done. I’m trying to get my mojo back! So, I’ve reconnected at work to see how things are going, and with some industry contacts. And, I’m getting going on some things at home.

I’ve also been pondering those longer run items. This involves a lot of gazing out the window. But I can report that the birds did eventually find the seed and I will too.

Stay warm, BB

Bird Brains

The other day, an inch or so of ice fell overnight, covering every surface and the branches of the trees. The next morning, I was watching the birds flitter around among the branches in my backyard, trying to stay out of the freezing rain that was still falling. Feeling bad for them, I went out and threw some bird seed on the patio and on the picnic table on our deck. Then I sat at the kitchen window and waited to see who would be the first to discover it – the juncos or the titmice. After about 20 minutes of watching, not a single bird had noticed the seed. They continued to flit around on the branches either trying to stay dry or stay warm. And many seemed to be trying to pick at the ice in search of food. But none saw the seeds I had thrown even though they stood out boldly on the table. My offering was undiscovered yet not undiscoverable.

As I thought about these avian knuckleheads, it dawned on me that their situation is a good analogy for me. Until now, I have been so busy focusing on and dealing with the immediate changes in our family life – the chemo routines, the scans, the side effects, the disability paperwork, how the kids are coping, etc – that I haven’t thought at all about the long term. In fact, I said to someone recently that I don’t think farther than a week or two ahead because I don’t know what the future will bring. I have been staying out of the rain and trying to stay warm.

Now that we’re getting the routine down a little better, and having received a hopeful result from my first scan, I think it makes sense to start thinking a little more long term. How can I make the most of, and be productive, during the better days during this chemotherapy? What happens when I come off of chemo later in 2009? How will I handle returning to work? Do I want to change my outlook on what’s important in life based on this experience? Are there things I want to do now, before a potential downturn in health would make it impossible? What’s really important to do and what do I do just because it’s there and it needs doing? And many more questions …

These are the seeds on my picnic table which have been undiscovered by me. I’m still in the trees, shedding the rain. But they are not undiscoverable. Up to now, I have blogged mostly about the mechanics of cancer therapy. I may blog more in the future about these bigger issues. One thing I have learned is how great and diverse and creative and intelligent my friends and family are. Perhaps in sharing some thoughts that go beyond the mechanics, it may prompt you to share a perspective from your experience. Or, perhaps it will even prompt you to address something in your life that you’ve been meaning to focus on but daily life has been getting in the way!

Stay warm! BB

Round 5 – Everything 50% Off

Yesterday was Round 5. But more importantly, I got the results of my first official MSK CT Scan to see how treatment is going. The scan was on the 7th. I am absolutely ecstatic to report that I had a really good scan. Dr. S says I have about a 50% shrinkage in tumor volume! My own personal post-holiday 50% off sale! This is about as good as it gets! So naturally, I asked him if this great response means that my treatment plan can be adjusted. He had to bring me down from the ceiling and remind me that we are only in the “early innings” and while this progress is very encouraging, I should still expect an “open ended commitment to chemo”. More specifically, I asked how long in 2009 I will need to keep up the chemo – he said expect to go through the summer and then we’ll see if I can have a “chemo holiday”. So, although Dr. S is certainly more cautious in his optimism than I am, I’m going with the good news. He’s gotta be careful not to over promise, I can go with the lift that comes with feeling like I’m going to see the other side of this thing. Positive attitude counts!

And thanks to you all, for all your great support – it’s working!

So here are some other tidbits….the cold sensitivity side effects from Oxaliplatin are really bad this time – as expected. But luckily, I will only have one more dose of Oxi and then he’s taking me off. Then, I think I’ll go back to Florida and try to warm up!

I had a second round with the acupuncturist to see if that can help with the side effects (I’d like to use less chemicals). He used 32 pins this time – I was quite the human pin cushion! I doesn’t really hurt though – not even the one right between the eyes! We’ll see how well it works.

OK, so that’s all the news that’s fit to print. I’m so glad to share the news….take care, BB

Florida

Well, a little break from the cold was just what the doctor ordered (that is, if I was the doctor)! Rob and I spent three warm days in Tampa – walking in the park, visiting the beach, taking a sunset boat ride and using the spa services at the resort – sauna, pools, hot tubs, exercise classes. We also got to spend some quality time with my father. I’m not sure why we came back…oh yeah, we have kids to take care of….almost forgot…actually I texted the kids to try to make them jealous (they had declined to come with us) but they were all about the snow, which they expected was going to be 6 to 8 inches. To their disappointment, it was only a couple plus a layer of ice.

I love the sauna – 150 degrees of “dry heat”. Only time I’ve felt warm in months! I could do that every day. Of course, if you stay in too long, you need basting! I also like the fresh fruit in Florida. It’s probably the same fruit we have here but when you eat it on the veranda in a warm breeze, it tastes fresher!

We returned in time to scrape the inch or so of ice off the car in long term parking. And after finding that both the kids and the grandparents survived each other while we were away, it’s time again to wrap ourselves in blankets against the coming cold front!

So, as for Florida, I feel as MacArthur did after leaving the Phillipines…"I shall return…"

On a side note, I set up an appointment for today with an acupuncturist. I’ve heard that acupuncture can help alleviate nausea and some of the pain for which I now take meds. I’d like to lower the level of chemistry going on in my body so perhaps this will be a good substitute. The acupuncturist also said it could help with my energy level. That would be great since it’s still pretty low – although sometimes I can make it through a day with only one 2 hour nap!

Wishing you a warm week…BB

Happy New Year!

Happy New Year to Everyone! I hope you all had a great holiday! We certainly did a lot of holidazing here with Christmas and two birthdays to celebrate (David turned 13 on January 3 – oh no, two teens in the house!). But now it’s time to try to get back to “normal” – whatever that means!

Here’s a minor chemo update. This round was (thankfully) unremarkable when it comes to side effects – just the usual stuff and it’s waning - so I’m feeling optimistic about having a productive week. Robbie solo’d on unhooking me on Jan 1st – with the exception that we had a friend who is a nurse come over and watch her do it. She did a great job – she’s dynamite with a syringe – so it will save me trips to the city on unplugging days! It’s a three hour round trip for about 15 minutes of “work”. I’m scheduled to have an “official” Sloan Kettering CT scan this week but I can do it at the Basking Ridge cancer center which is only 20 minutes away. I’m looking forward to getting the results back since I know the news will be good!

So, to get a little break from all the hubbub of the last three months, Rob and I are going to Florida on Thursday for a long weekend. I got a great deal on the airfare, etc and I’ll be able to spend a few days with my Dad, who I haven’t seen in quite a while. And the temps should be around 70 degrees (yeah, baby!)

So that’s the news – I sincerely wish you all a GREAT start to 2009 – it’s already started in the right direction for us! Be Well…BB

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