The chemo pump

Here is a photo of the bag I carry and its contents. On one side is the pump, a little machine that pumps the chemo into me while I go about thankfully living life. On the other side is the IV bag of chemo. It is all connected to a port in my chest, then the black bag gets zipped shut and off I go. Side note: The pump was created by Dean Kamen, the same guy who created the Segway.

One week checkup: Good

I hope you all had a merry Christmas day, whether or not you celebrate Christmas. It was a good one here!

One of many Christmas miracles: We originally planned to visit my parents in Pittsburgh, which we do every year. I had some gifts sent there, and the kids get enough from family that we don't really plan for Santa to come to our house. My chemo schedule threw a wrench in those plans and, while I was happy to be home to celebrate (as opposed to in the hospital), I had no gifts for the kids.

I decided to get each child one good gift each. I called FAO Schwartz in plenty of time to get the two gifts by Christmas. But, they never arrived. Not only that, they couldn't track them down.

A few days later, a lovely woman in Illinois called me. (Hmmm....I just clicked spell-check on Illinois and got "Illinois" or "illness." Does that mean something?) She just returned from vacation and found these two packages on her doorstep.

It was December 23rd. I didn't know how I could get those by Christmas. I couldn't get out to shop, and these were the only gifts for the kids.

I called FAO Schwartz, and the wonderful woman on the other end offered to overnight the gifts for free if I would promise to send the others back. DONE!

Angels are everywhere.

I sobbed with a mixture of relief, and disbelief that we were all in this situation.

Meanwhile, back at the front...

I had a check-up today, where they see how I tolerated my first chemo session and then make any adjustments.

After my Tuesday chemo session, I wore the pump for two days. It was weird but do-able. On Thursday, I drove with the kids to Framingham, where my husband was working, so that he could remove the pump, then I drove (with the boys and a babysitter) to New Hampshire in a snowstorm / blizzard (should have checked the weather -- oops) to take a ride on the Polar Express train and see Santa. We all had a great time. The best part proving to myself that my life doesn't need to be completely on hold.



Then, Saturday was a bad day, so I gave the doctors my list of complaints.

They listened kindly, and then said, "Looks like you did pretty well. We won't need to make any changes. Maybe just reduce your nausea meds a bit."

At this point, I'm simultaneously wondering, "That was considered GOOD?" and celebrating that I maybe can actually do this thing. So, hang on for the ride!

I'm up for session #2 on Jan 2, ready to ring in the new year with some joy juice. (No, that isn't champagne, Jen!)

Have a wonderful, fun New Year's celebration and 2008!

Love, Marie

Day 1 of Chemo in the Bag!

Hi everyone,

Just a quick note to let you know that the positive vibes really worked. Weirdly, I had a pretty great day. THANK YOU for helping that to happen!

It was definitely a LOOOOONG day, but everyone was so nice. I had visions of rolling out of the hospital on a wheelchair, barely conscious, so I was thrilled to walk out myself, and I felt pretty good overall.

I already have one of the expected side effects -- it really hurts to touch anything cold! Even lifting a room temperature glass of water, I can feel the coldness in it. Hmmm. Perhaps winter was not the best season to be doing this! But, it is a known effect, so I'm kind of reassured that maybe this stuff really does do something. And if you see someone walking down the street bundled from head to toe...that would be me!

I have my continuous infusion pump on, so I am wearing a little machine and a bag like you get when you get an IV. Our one-year-old is intrigued by the buttons, and our four-year-old is obsessed with keeping it safe and attached. I'm told that I can do yoga with it on, even a headstand. That intrigues me, especially because I can't really do a headstand on a good day. Maybe this will give me magic powers.

Have a wonderful rest of the week. Thank you SO MUCH for your support today. It could have been a completely awful day, but it was instead full of angels.

Love, Marie

The good guys wear white

I'll be working with closely with these two wonderful women. The one on the left is my patient coordinator, the person to call when I don't know who to call. She is amazing and does it all. The one on the right is my chemo nurse. She is the one who reassures me that it will all be fine, then dresses up in full body armor before giving me chemo! She does painless blood draws, and has a great personality to boot.

Port is in; chemo to start

Thanks for all your nice messages! I'm sorry that I haven't replied much. I have been acting like this is my last good weekend, which, I'm told, is crazy, but whatever. I scheduled myself for every minute. And then, my gazillion plans for the weekend got snowed out anyway!

I had the port placed on Friday. For those of you lucky enough to not know much about all this, it is basically an IV line that is implanted in your chest so that they don't need to do an IV every time. For someone like me who doesn't do well with IVs, it is pretty fortunate that they do this.

Chemo starts on Tuesday, with a full day of activities -- a blood draw, doctor appointment, and then the actual chemo session (3+ hours). In addition, there is "chemo training" (no clue what that is) and a visit from the doctor who helps people who are parenting through chemo.

After my chemo session, I will wear a continuous infusion pump for almost two days, so I'll learn how to remove that as well. MY HUSBAND will learn how to remove that, because I'm not quite psyched about doing that myself. His Harvard medical degree gives me some degree of confidence that he can handle it better than my non-medical experience.

So, for the big day ahead, send some good healing vibes and some calming ones as well!

I promise I'll set up that blog soon and not bug you via e-mail, but I really really appreciate your being there.

Love, Marie

Chemo begins tomorrow

Hi everyone,

I want to thank you for being part of the healing circle on Friday,
whether you were there in person or in spirit. I can't begin to
describe how powerful or how meaningful it was and is to me. I can
still feel the vibes, and I am packing my "chemo bag" tomorrow, and
you will all be with me there.

Thank you so much for all of that.

If you are so inspired tomorrow -- I will be at MGH from 10:30 until
who knows when, but probably until at least 5:00. Chemo is supposed
to start at 1:00, and run for 3+ hours. Anytime in there, if you
think of me, send a few positive, healing vibes toward me!!!

I feel so blessed to have you in my life.

Love, Marie

Our Christmas message (with names removed)

I wanted to send a quick update from our little corner of the world...

First item:
We moved! We are now living in our new house, and the new address is

XXXXXXX

Everything else remains the same.

Because we built new, the post office will not deliver mail to this address until we complete some paperwork with the Department of Public Works to indicate that this is now a safe address to deliver to. Who knew that they actually work together ?? Anyway, if you send something here too soon, it will be returned by the post office until all this is done. Safest to use the old address (XYXYXY) until maybe January 1.

Second item:
I was recently diagnosed with colon cancer. The good news is that it doesn't appear to be in any scary organs, but I had surgery and am moving ahead with chemo and radiation, as well as, of course, accupunture, nutrition, and anything else I can try. (Any suggestions are welcome!)

If all goes according to plan, my treatments start next week (the week of Dec 17th).

Third item:
I'm feeling great; actually, we are all doing pretty well. My husband is doing well, Our four-year-old is at a super-fantastic beyond-amazing more-than-we-could-ever-dream-of school which provides an invisible but strong safety net for him along with an enormous daily dose of FUN, and our one-year-old is incredibly focused on learning to talk, eating everything in sight, and doing everything that his older brother does. So, things are good.

But I'm told that I will likely want some help from time to time. I'm not yet sure what our family may need, but many of you have very generously offered to help.

is coordinating any offers to help. If you can send a message to her, she will keep you on the list, and whenever we figure out what we need, she'll send out a request. Feel free to pass along this message, if I missed anyone on the list.

Fourth item:
If you want to come along for the ride, I'll set up a blog (so that I am not inundating you with e-mail updates). I haven't yet set that up, but I can let you know when that happens.

Finally:
I decided to skip sending Christmas cards this year. I can hear all you eco-friendly folks giving a big cheer! But, keep us on your list, and you'll hear from us next year! I may send an e-mail message with a photo before Christmas.

That's about it from here. Keep sending good vibes whenever you are so inspired!

BIGGEST ITEM OF ALL:
A huge thank you and hug to everyone who has done so much already to help us out.

Marie

Great time in NYC

We had a great time in NYC! Here we are in Central Park.

Decided on MGH

Thank you for all of this, everyone. It was so affirming! I was finally able quiet my insides a bit last night and MGH felt like the right answer, and then I read your e-mails and felt even better about it. So I called them this morning and told them it is a go.

So next week, I have the surgery to have the port-a-cath installed, and the week after that, the games begin.

I got a call from the hospital today. They are mailing the anti-nausea meds so that I have them at the start. Lovely.

We are going to New York City this weekend. Just before my surgery, I went wild and booked this trip. I think I knew at some level that all this was coming.

Off to pack.

Love you guys!
Marie

Trying to decide on treatment location

Hi everyone,

It's been crazy busy here, between doctor appointments and the move.

I'm trying to quiet myself but wanted to send this out and get any thoughts you may have.

My next step is to decide where to go for treatment. I've narrowed it to MGH and Dana Farber.

Here are my thoughts and what I think I know about each place:

Chemo itself:
The cocktail itself is the same at both places.
DFCI: 2 months chemo, 2 months radiation w/chemo pump infusion 7 days a week, 2 months chemo
MGH: 2 months chemo, 2 months radiation w/chemo pump infusion 5 days a week, 4 months chemo

Radiation oncologist:
Both places, the guys are really nice and top notch. The one at MGH actually calmed me down about radiation (though, the risks are the same). Also, both places made it my choice to have the radiation.

Parking:
For me, DFCI parking is better

Infusion room:
DFCI: Some private rooms, otherwise, one communal room with curtains (which isn't bad at all).
MGH: Mostly private rooms with TVs (we could party!), one small communal room

Alternative care:
DFCI: Extensive
MGH: Not so extensive, but can bring in therapists during chemo if you want

Doctors (get this one):
DFCI: Doctor is leaving in the spring for another job, so I won't have the same one all the way through
MGH: Doctor is leaving in the spring for maternity leave, so I won't have the same one all the way through.

I had back-to-back meetings at DFCI and MGH on Wed and each doctor told me they were leaving. Wild coincidence, but good to know!

Overall ambiance:
DFCI: More comfy, but less personal treatment. Feels a bit more like you are part of the machine. A good machine, though!
MGH: Not as comfy (facilities are new, but the fluorescent lights seem more glaring), but they have a wonderful nurse contact person who has been a great go-to gal and makes it feel like they are catering to you.

Okay, writing that actually helped me to clarify my thoughts on the differences. Now I just have to get quiet and try to hear what comes.

Let me know if you have any thoughts / read anything into this. I need to decide by tomorrow because I really should have started chemo this week, so I have to get moving.

Love, Me