Happy Thanksgiving!

I hope you all had a great time this Thanksgiving - full of family and food! We had a great time hosting this year. Everyone brought terrific dishes, Robbie made an incredible turkey and we all enjoyed the day!

I want to take this occasion to express my sincere thanks to all of you who have been so supportive to me and my family during these past two months. It has been a difficult time. And I will admit that I have had some pretty dark days, particularly early on. But it seems that whenever my coping skills frayed and my ability to stay positive began to wane, I would get a note or a call or an email from one of you. And like magic, it would give me the lift I needed to take the next step. I can’t express to you all how much your words and acts have meant. I owe you all a debt I may never be able to repay.

So this Thanksgiving, I give thanks to you for all you have done for Rob and me.

BB

BB Unplugged

Thought I’d finish off the weekend with an entry about getting unplugged from my infusion last Friday. Rob came into the city Friday afternoon and met me at work to walk over to MSK for the de-coupling ceremony. It’s pretty quiet there on a late Friday afternoon, so there was little waiting. I’m glad it wasn’t busy because we had some questions for the chemo nurse about side effects and I needed a blood draw for the study.

It turns out that my jaw pain when I eat is a common side effect of the Oxaliplatin. Not much they can do about it, though. But I’m learning that being ABLE to do something about a symptom doesn’t mean you WANT to do something about it. For example – 5FU makes you nauseous. For this they give you anti-nausea drugs which make you constipated. But this can be helped with another pill that only gives you stomach cramps. So, like someone making soup without a recipe, I’m trying to figure out how much or how often to take these various things to balance it all out. Or maybe I’ll just live with some of it. If I can get the balance just right, I think I can go back to ballroom dancing…

The de-coupling ceremony was pretty straightforward. It does take a little bit of equipment and two hands so I doubt I could do it by myself without a lot of practice. But Rob was eager to learn de-coupling skills and she’s volunteered to be the master of ceremonies once they let us do it ourselves.

The process is to first disconnect the pump and then to inject the line with a syringe of saline to push any remaining chemo through it. Then you inject a syringe of Heparin, a blood thinner, which fills the port so that no blood clots form in it while it’s not being actively used. Then, you remove the medical tape pads used to attach the tubes to the chest. (Ladies – these easy-peel pads are great for hair removal!). And then, you pull the needle out. The needle is actually inside a little plastic device which is rather cleverly designed and helps make it easier to pull it out cleanly.

After getting unplugged, Rob and I came home where I pretty promptly fell asleep. Actually, I spent the better part of this weekend sleeping or resting. I’m finally feeling a little more normal today. The nausea and fatigue are definitely the most taxing aspects of chemo – just as advertised in those glossy bochures!

So I’m on a chemical holiday now (and it feels like nirvana to be unplugged!)...until round 2 starts on December 2nd!

Happy Thanksgiving to you all!!!

My First Day in the Big Chemo Chair

Well, they weren’t kidding when they said to expect a long day! Rob and I made the 6:35am to Penn Station this morning and got home a bit before 7 pm. Being the first visit, it was longer than the on-going will be, I’m told.

Before I get to describing the day, I want to point out that in this entry, I’m going to talk a little about pain and side effects. I don’t plan to turn this blog into a litany of complaints but I do want to document some of the initial things. I’ll start a separate paper log of symptoms, etc for the doctors as part of the treatment’s on-going monitoring.

I’ve also been amazed at the friendliness and kindness of everyone at MSK. From the receptionists to the phlebotomists (look that one up, Sara!) to the nurses and technicians, they all do their best to make it easier to get through the treatments. And the treatments, generally, are a lot of waiting around followed by being poked with a needle or two. Then you get an examination or a ride in a medical device. Clothing is optional…

The agenda for today was blood draw, visit with the oncologist, treatment and an ECG. Since I gave blood yesterday (twice), I questioned whether the draw was needed, but after a couple of calls, I was told that yesterday’s draw was my draw to qualify to be in the study. Today’s draw was my pre-treatment study. As the day went on, I had additional blood drawn after each individual dose was given (I’ll get to the dose sequence later).

To start treatment, I met with Dr. R since Dr. S is not in on Wednesdays. I learned that Dr. S saw 40 patients yesterday! Since he has always taken the time to fully explain things to Rob and me, I can’t imagine how long the day must have been (maybe his on-going patients don’t ask as many questions as we newbies do). Anyway, I liked Dr. R a lot. She too, took the time to talk through things. One issue I’ve had is an on-going acid reflux. I started having the problem sporadically (read: after business dinners involving rich food, wine and coffee) but in the last few months have taken quite a bit of Pepcid AC (without the benefit of rich food, wine or coffee!). In fact, my acid reflux actually showed up on the PET scan a few weeks back! Dr. S yesterday suggested that I start a daily oral anti-acid drug but didn’t write the script. I asked Dr. R today and she wrote a script for Protonix (pantoprazole).

I also asked her about a mild pain I’ve in my stomach for a couple of weeks. I had thought it was related to the ab surgery but everything else has gone away. It actually just feels like a cramp. Based on its location, Dr. R said that it could be pain from one of the liver lesions. I was wondering when I’d feel some symptom from the actual cancer. If it gets worse, I can take something for it but for now, I’ll let it go.

While I'm mentioning scripts, I should note that Dr. S wrote a script yesterday for anti-nausea medicine in case I get that side effect. The drug is Prochlorperazine. This drug will also be on the quiz I mentioned yesterday, so please add it to your notebooks!

So on we went to the 7th floor where they do a lot of the chemo for people in studies. I asked one of the nurses how many studies are going on and she started naming them and counting on her fingers. When she unlaced her shoes, I said she could stop as I got the picture.

There is some waiting before you get chemo because the doctor writes the order and the MSK pharmacy fills it on the spot. This usually takes about 90 minutes. The nurse brought Rob and I to a room with a reclining chair (the big chemo chair) a bed and a couple of other chairs. Fortunately, our room had an exterior window and Rob & I both enjoyed the bright sunshine and view down 3rd Avenue. The nurse killed the time by setting up my port with an IV and tapping a vein for some blood draws.

The chemo arrives in big bag full of smaller bags. The nurses take out the bags and read off the dosages and my name & serial number and then enter them into a computer in the room. This way we all know these are my drugs. I started with 6 little pills (2 different anti-nausea meds. At least one is a steroid and I’ve heard other patients say it makes you feel “good” for a few days and then you crash. These meds were Zofran and Decadron.). Next I had a two hour infusion of Oxaliplatin and Leucovorin. Then we had a quick IV push of 5FU before going to 10 minutes of Avastin. Then, I took a 30 minute chemical break before we finished off with my mystery bag which is labeled to say “this is either the experimental stuff or placebo but we’re not telling”. The last drip took 1 hour. As mentioned above, between each drug we drew some blood for analysis.

And then finally, we are on to the 48 hour “pump”. I will continue to take 5FU by slow infusion for 48 hours. To do this, they leave the port in my chest connected to what basically looks like a baby bottle. The bottle has a balloon in it filled with 5FU. When the balloon is completely deflated – about 46 to 48 hours later – I return to MSK to have the port disconnected. In the meantime, I have a very fashionable baby-bottle holder to attach to a belt loop or wear on a strap around my waist with a thin line going up to the port. I do believe that in the future, this technique will be adopted by America’s youth, much like the iPod nano, to infuse themselves with their own personal nutritional concoctions of choice. And the holders will be a fashion rage, created by the finest designers. You wait – I said it first!

During the treatment, I mostly dozed or read the paper. I also ate my complimentary turkey sandwich. Rob ordered off a menu she needed to pay for (hey, yesterday was free birthday lunch day!). We also made calls to our health insurer since it’s “open enrollment” time and we want to make sure we pick a plan that covers all my stuff. Never a better time to be on hold for all those voice response systems than when you’re lazing around in your big chemo chair.

After all the drugs, I got a quick ECG to make sure the heart still works (it does) and we were out of there (it was about 4:40 pm). We got there at 8:15 am.

A quick note about side effects: Not a single tinge of nausea so far (yeah, baby!). I do have an immediate reaction to the Oxaliplatin called neuropathy. This is a pins & needles feeling in the fingers and toes along with a very strong sensitivity to cold. Walking the 100 yards from the train to my car in about 30 degree weather felt like a trip to the artic. I’m going to have to bundle up for work tomorrow! I also have a strange (but very sharp) pain in my jaw when I eat but it goes away after a minute or so. And, cold drinks are painful to my throat so drinks are better at room temperature. Not-too-hot tea is fine, though. Alright, I’m done whining now….

So that’s the story. Now you know what a day of chemo is like in the Big Chair. I go for round two in two weeks.

My First Day of Treatment (Almost)

Rob and I went to MSK today for my first scheduled FOLFOX treatment. FOLFOX is cancer-speak for a particular cocktail of meds. The meds are fluorouracil (also called 5FU), leucovorin and oxaliplatin. There is a similar regiment that is also often prescribed – and I may at some point in the future switch to – which replaces oxaliplatin with irinotecan. In addition, I will get Avastin (also known as bevacizumab). There will be a quiz later on the spelling and pronunciation of each of these compounds, so please study up…

In consulting with Dr. S, I decided to participate in a study of a new medicine that has “shown some promise” in early trials. Luckily for you quiz-takers, it doesn’t have a name yet, only a number from the pharma company that created it. I’ll get this drug in addition to the FOLFOX plus Avastin regiment. As a result of joining the study, however, today became a prep day and my treatment will actually be tomorrow. Prep means – signing treatment forms (in triplicate), drawing blood, doing an ECG and a CAT scan (includes an IV of an iodine solution to give the pictures contrast). The iodine injection is a little curious in that it makes you feel warm from the inside out! Then we consulted with the chemo nurse to review the side effects, logistics, etc and got the appointment for tomorrow.

Then I took Rob to a nice lunch because it’s her birthday!!

The decision to do the trial drug took some discussion. I won’t have a chance to get this drug if I don’t go on the trial. In my current position, I don’t feel like I have the luxury to pass up potentially helpful therapies, if they won’t be available to me again in the near future (which this one won’t). Early indications are that it could be effective and it doesn’t appear to have significant side effects or do harm. Rob was concerned about potential side effects and the additional doctor visits, blood draws, etc that come with being part of the study. She was also concerned that there is no evidence that the stuff actually works or that it isn’t potentially harmful (some work has been done on both issues but only in a limited way).

In the end, Dr. S couldn’t give us definite answers one way or the other. He simply reinforced that I will get the standard of care (the quiz drugs above) either way. So, since it’s my body, I decided to take the chance on the trial in the hope that there will be a benefit. There is extra monitoring with the trial, so they will hopefully pick up any side effects early and I always have the option to drop the trial drug at any time for any reason.

It’s also interesting to note that this is a “blind” study where 1/3 of participants get a high dose, 1/3 get a small dose and 1/3 get a placebo. The doctors don’t even know who’s getting which. So, in the end, after much discussion, I may just be getting sugar-water anyway!

So, I’m now prepped (poked and prodded) and ready to start my first session in the big chemo chair. We need to be back at MSK at 8 am tomorrow and have been told to expect a long day…..I’m bringing a good book….

New Port

Yesterday I went to MSK to get my port put in. The port is put in under the skin in the chest near the collar bone and has a catheter going to the jugular vein. The port is the entry point for chemotherapy so that the doctors don’t need to keep tapping veins.

As has been the case with every interaction we’ve had so far at Sloan, everyone who works there is friendly and helpful. We had a bit of a wait before I actually went into the procedure room (we arrived at 6:30 am, an hour earlier than we were supposed to and I believe we got started at about 10 am), but they made us as comfortable as possible. The procedure didn’t take long and thankfully, I don’t remember any of it! I then slept off the effects of the anesthesia until about 2 pm and we came back to Morristown.

The incision should heal over in a few days and then I’ll be ready to start treatment next Tuesday.

Farewell to Richmond

As luck would have it, one good thing has come about this month. We are under contract to sell our house in Virginia! It will be a great relief to be down to paying only one mortgage! It also happens that the end of last week was a teachers’ holiday in NJ. So Rob, the kids & I went down to Richmond to clean out the last items in the house and to see some good friends we made in our time there.

And the only thing warmer than the weather in Richmond is the people!

Both Vicki and David were able to spend time with their school friends and I was able to see some of the great folks I worked with at Genworth. We also saw some very good friends in the neighborhood.

We really enjoyed our relatively short time as Virginians. Having never lived outside of a large metro area (New York or Boston), it was a new experience.

I absolutely love the weather – central Virginia has a long spring (March is a spring month) and a long fall (November highs still hit upper 60’s and low 70’s) and a mild winter. Well worth the trade for a bit more heat in the summer!

And Richmond offers some gems – like good restaurants (Mama Zu’s), great BBQ (that’s a noun, not a verb in the South), good local performing arts (Firehouse Theatre), the casual summer fun of Triple A baseball (the now departed Richmond Braves), and of course the James River. The James is, in my opinion, an under-appreciated part of Richmond. But, once you hike along its banks, swim amongst its boulders or fish for its monster catfish (up to 70 lbs!), you really can’t think of Richmond without thinking of the James. At least I can’t.

In any event, that chapter of our lives is coming to a close. And, we all leave with fond memories of the time we spent there and the wonderful people we had the privilege to call our friends, colleagues and neighbors.

Get Thee to a Colonoscopy

As Hamlet said to Ophelia (Act 3, Scene 1) "Get Thee to a Colonoscopy"....

I want to remind you all to PLEASE go get a colonoscopy if you are:

1. over 50 or
2. if you have any symptoms or
3. if you have a history of cancer in your family.

With early detection, colon cancer is highly treatable, even “curable”.

So, please take this opportunity to share this reminder with any friends or family who might have any reason to suspect an issue or are over 50. A colonoscopy is really a breeze of a procedure and the downside of not catching colon cancer early is significant...

Again to quote Hamlet (Act 5, Scene 1) "Alas, poor Yorick. I knew him well, Horatio...colon cancer, 'tis the second leading cancer killer for both Ladies and Gentlemen...."

Take Care, BB