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

Ruled out one place for chemo; two options remaining

Thanks for the note -- I'd love to hear more about the place at MGH. I learned a little about it when I was there last but am interested in learning more. Having complementary therapies means alot to me.

I met with the oncologist at Beth Israel today. I assume that he is good but we had such different communication styles. It was a frustrating communication but good to know that I can rule him out. So now it is down to Dana Farber and Mass General. Also, DF and MGH offer on-site complementary therapies.

The other nice thing that happened today was this. The first BI oncologist I met over the phone was extremely nice, supportive and positive. I adored him. But, for a number of reasons, I was "assigned" to this other guy. Onc#1 did alot of work on my case and was wonderful to me when I was most scared, so I wrote a note to him. While I was there today to see onc #2, onc #1 stopped by the room to say and he gave me a big hug. Loved that support. Onc #2, however, is not the supportive type.

Then I went to see a radiation oncologist. I thought I was afraid of chemo. Okay, I can't resist the colon pun, but now, radiation scares the shit out of me. I had no idea how big a deal it is to get radiation treatments and what it does to your body.

Next week, I have one more meeting with Dana Farber and with MGH, and I'll need to decide by then because I'm closing in on the date I am supposed to begin chemo.

Okay, not that you asked for the update, it just came out!

Love, Me

No bad spots on my liver!

Hey, the good vibes are working -- no bad spots on my liver! Yay! They are just hemageomas (which I don't know how to spell) and a cyst. Yay!

That means, my disease is stage three, I'll still have chemo, but the outlook is more hopeful.

Before all that, though, we are getting ready to move to our new home....

Love, me

Help comes through!

Thank you all for your offers to help and sleep over! I was figuring out a schedule when my parents decided to stay another week. It seems like something new pops up every day here - now my husband has a herniated disk. My four-year-old has some sort of hip problem and is still walking like an old man. I have a feeling that he is headed for an exam at Children's Hospital. As for me, I actually had one day with no IV. Yay for that!!!

Watching us here, I think that they figure we can use the help. (We can.)

Thank you all for your offers. I can't tell you how much I appreciate it.

Happy Thanksgiving!

Got the MRI; no results yet

Hi guys,

I did the MRI today at MGH. It required an IV (my 3rd in a week) because they had to inject contrast dye to see the liver. Wasn't fun, I'll say that, but I'm sure that there are other things coming up that are less fun. They did have this cool light that helps them to see veins. (At this point, it is hard to find good veins in me.)

Anyway, I thought I would get the results right away, but they send the slides off to some sub-basement to be read, and they wouldn't let my husband see them. He reads MRI professionally, but they don't let others see it. I will try and get a disk tomorrow from them with the pictures they took, and he could read that. Otherwise, I get the results on Monday. Argh. While it seems like a long wait for the results, it is sooner than I otherwise would know.

I am learning that Dana Farber has a whole alternative medicine practice, where you can have accupunture during chemo. I'm intrigued by that.

I'm trying to figure out what to do about having my parents here. They want to leave on Thanksgiving day and drive home. My father says that my mother is getting tired, which very well could be true. (I'm oblivious.) My husband is leaving town for a work conference on Sunday night and we both think that I shouldn't be alone with the kids overnight in case I get sick again. So, if you know of any sitters who would be willing to do a shift on Sunday or Monday from either 5 pm to 7 am, or even 10 pm to 7 am, that would be great.

Thanks for all of your support, everyone. I don't know what I would do without it!

Love, Marie

Getting opinion from MGH oncologists

So, me me me. It's all about me. Even I'm getting a bit tired of the topic!

I had an oncology consultation today at MGH. Dr. A was awesome. Love love love her. But, you work alot with the resident. He's okay -- smart, but not whip smart, and doesn't quite get where I am coming from with my questions. So that is a trade-off.

The news from Dana Farber was good -- curable disease, straightforward treatment.

The news from MGH is not bad but more cautious.

The cautious part -- last week, in the ER, I had a CT scan that showed spots on my liver. My first thought was, wow, this only gets better and better. To be fair, it might be normal stuff. Given the oddities of the past month, it's hard to bank on that.

Anyway, MGH wants to do and MRI to definitively say what those things are. Frankly, that is scary. But, it is what it is, I guess, and I just need to get the MRI done. They will schedule it, and reserve judgement until then.

More cautious part: Until they see the pathology slides themselves (I was unable to get those to them in time), they can't say whether the cancer is in the lymph nodes (not great) or fatty tissue (worse). The BI report is ambiguous (ugh), the Dana Farber seems to feel it is lymph, but it is questionable enough that MGH wants to look themselves.

Finally, the MGH docs called the surgeon, who, despite his operative note saying this is colon, now deems it to be rectal. The difference (to me) is in the chemo treatment you get, and, with rectal, you get the added bonus of radiation. Ugh. Oh, and the fact that "rectal" sounds even less attractive than "colon".

Where is the good news? Well, I love that they are thorough and called the surgeon themselves, want to see the slides, set up the MRI, etc.

Dana Farber offers a whip-smart resident, though.

It's so hard to know who to go with, though maybe the path is getting clearer.

On top of all this, my four-year-old has been having a sore leg. He never complains, but he did about this, so we were watching out. He started walking with a limp, and we took him to the pediatrician, who had us take him to Children's Hospital. So, there we were, juggling hospital doctor appointments. He's on watch and wait, and seems to be a little better tonight. It was horrible to not be able to be there for him.

I sometimes wonder if some black cloud passed over our house one night and I forgot to get us all out of the way.

I'll end with a funny story. One of my allergies is Thimerisal, a preservative used in some eyedrops and in some vaccines. While I was in the ER, I heard one nurse telling another nurse that I was allergic to Tiramisu. How funny is that!

Love, Marie

Landed in hospital for infection, but back home again!

Hi everyone --

I'm back home from the hospital. Wow -- between the two hospital stays and just being out of it and mostly in bed between those, I am SO behind on everything and we move next week! Yikes.

But, I'm feeling really well and this stay was not nearly as unpleasant as the last.

Short version: Went to ER on Thursday due to extremely high fevers. They did a million tests but could find no cause for the fever and low blood pressure. They wanted to admit me; I opted to go home. Next day, felt great! But, they called to say, come back in and be treated for infection in my blood. I returned to the ER, then was admitted to BI for two days of IV antibiotics. I'm on oral antibiotics now to clear this up.

My personal opinion is that my body did a great job of cleaning it up on its own, but, in order to prove that, I would have had to stay another two days to make sure there was no infection remaining in my blood.

MGH oncologist appt on Monday.

I want to write more -- some hilarious stories from the hospital! -- but am tired so going to bed. Thanks for all the good vibes!

Love, Marie

Meeting at Dana Farber, but not feeling well

I was supposed to meet the oncologists at Dana Farber and at Beth Israel yesterday, but I only saw the doctors at Dana Farber. Every one there is very nice and seems to be very knowledgeable. There is still disagreement about whether this is colon or rectal. I learned that the operative notes said that the infected node came from the colon area, through the surgeon told the oncologists at the BI that it was rectal. So I'm still not clear, and they need that clarity in order to determine my course of treatment.

In the meantime, I've developed this high fever (which may explain my long message the other day!) After I wrote the message, I went to bed. I was freezing (typical fever stuff) and really dehydrated all night. I got up to go to the bathroom, and, walking back, fainted. I've never done that before -- it's not a delicate fall, the way I always imagined -- and makes me want to get carpets. Ouch!

Turns out, my blood pressure is really low (80 over 53, for people who like numbers).

So, after that, I decided that I couldn't do both appointments (Dana Farber and Beth Israel), and should only do one. I called them to make sure it was okay that I come. I figure, I'm walking into a building filled with people with reduced immunity. But they told me to come if I could get there. So I did. (That is how I learned of my blood pressure.)

I spent most of the appointment lying on the table with a blanket over me because I was so wiped out -- they were very nice about that. It took about 2 1/2 hours to meet with everyone.

I learned two key things -- they recommend that I start chemo eight weeks after surgery, and in the meantime, I should do everything possible to gain weight (I've lost about 15 pounds since the surgery) and get strong.

So I have a set of goals, once I can get this fever under control.

More later -- I'm headed back to bed!

Love, Marie

Experience with doctors while recovering from surgery

Hi everyone,

Well, I thought I would write. I'm crazily trying to clean up my office these days -- wonder what that says psychologically! Nonetheless, that is my current focus. Though right now I should go to bed, I'm focused on my oncologist appointments tomorrow, so I need to do something. And here I am.

This has been the weirdest journey so far, to say the least. And I feel like it is just beginning. I got this sobering news, but at the same time, life continues as normal. It's both grounding and surreal.

Being diagnosed with cancer a second time is quite sobering. Last time, I didn't hesitate to ask for emotional support or help, I had a fantastic support system, a wonderful surgeon, and I feel like I sailed through everything, floating on all that.

This time, I feel like I am on my own in so many ways. I am really hesitant to ask for help, though I think I need to get over that. At the same time, I'm physically doing relatively okay. It makes me crazy to lay in bed and hear my mother-in-law come through the door, and in a stage whisper ask someone, "How is the pain?" I feel like screaming, "I'm not on a morphine drip!!!!" But then, I don't have the energy to do that, so maybe she has a point???? ha ha

I have to remind myself that she means well, though I do get a bit passive agressive. I now have some form of childcare almost 24 hours a day, and it feels like all my jobs and responsibilities are being covered, as though it really wouldn't matter whether I was here. Sometimes I just slip out of the room and no one seems to notice. I hate hearing other people play with my kids when that is what I want to do, but I just don't have the energy right now.

I also feel like I am on my own medically, though I'll admit that I am lucky to have my husband's help, as well as my friend, M, who is coming to appointments with me to help me sort through things. She's been through this, unfortunately, with her mother and numerous friends, so she is very familiar with this landscape.

Nonetheless, this can all feel very isolating!

BUT, I really went into this differently than last time. This time, I didn't educate myself and just trusted the system, like I was floating randomly in a river. One would think I would know better. Okay, yet another opportunity for growth! So, I had a colonoscopy, was referred to a surgeon with a great reputation. He met me in the hallway between operations. I assumed that he was kindly squeezing me in when he had no office appointments for a month. But what that also meant was that there were no office notes, which turns out to be important as I shop around for oncologists who want to know my history. Whoops.

Also, I learned that I really need docs with positive energy. The surgeon is a "typical surgeon": Go in, do the job, hand you off. My breast surgeon was wonderful, reciting whatever positive affirmations I wanted during the surgery, letting me wear headsets with music, describing everything she would do, checking in afterwards. This guy -- he would only talk about how my scar would look so good when I was more concerned about the process. And who knows what he was talking about during the surgery. I think that is why my healing is so weird, but, at this point, I have to find a way to let that go and just help myself to heal.

The surgeon doesn't really want to be involved, and handed me off to an oncologist. Long story short, there was kind of a debate as to who at the BI should get me, and I wasn't so comfortable with that, because in the process, they were making alot of assumptions about where the cancer came from. There are more details -- I'll spare you!

Then I booked appointments at Dana Farber and MGH for second opinions. The staff there seem to be really knowledgable, though I have yet to meet the oncologists. (I'll meet the DFCI onc tomorrow.) But, at both, they were surprised that someone did a cancer surgery without first doing a CAT scan, and are flummoxed that there are no office notes prior to the surgery (or after). Not giving me the warm fuzzies about my experience at the BI, though I will meet with their oncologist tomorrow as well.

I'm interested in seeing how I'll do both these appointments in one day, as I nap in the afternoon (what a luxury!), but we'll figure it out. Maybe it is time for caffeine! I really have no energy.

So, I do feel like I'm on my own in selecting the next step. The good news is that I have a choice. I have to say that it really blows my mind to walk into Dana Farber, seeing patients at all stages of cancer and wondering if that is my future. Though, my current feeling is that that is the best place to be.

Next, I fall back on nutrition. Maybe I can do something there? Guess what -- the diet they recommend is the diet I basically have followed all my life (okay, minus the lovely creamy chocolate brownies! :-) ). Not much there, but I'll keep looking. Kerry, you'll love this: My first meal after surgery was broth, Jell-O and ice cream! I read that Wolfgang Puck is now crafting hospital menus, but I guess not at the BI.

I started talking with survivors, but I don't think I'm in the right frame of mind yet. I need to find something to relate to in a survivor. Since I don't really know alot about my case, it doesn't help me to hear someone else's, because I can't relate, so that is on hold, though I am still collecting names.

The other thing I started to do was work on what psychological message was I supposed to get last time that I missed??? That is probably the most interesting pastime for me!

I'll leave you with this chuckle: As a result of this surgery, it is really painful to hold in gas. So, I have to let it out. And it stinks to high heaven! Almost immediately, someone looks into my one-year-old son's diaper while he has a puzzled look on his face (because he usually walks over to be changed when he poops -- you don't really need to check him). It cracks me up but then I have to own up and say it was me. AND, this now gives my four-year-old license to fart anytime, anywhere. For a four-year-old boy, this is joyful.

Well, thanks for reading this far, or at least, skimming this far. I got alot out of writing this, so don't feel like you really need to
read the whole thing unless you want to! But I do really appreciate all your support, in so many ways.

Love, Marie

More fuzzy information

Just read the pathology report and discussed with my husband. The cancer is not actually in the lymph node but in the fatty tissue. What on earth does THAT mean? Of course, I'm scared all over again. Yikes.

Beth Israel called today. They want me to come in sooner than planned and meet with a team of doctors. Next week. The good news is that I am getting attention.

I feel a bit like I am taking a path through a dark and scary woods.

Setting up my healing team

Things are okay. I'm mostly trying to be patient with my body as it heals from surgery, and putting together a list of survivors to talk with whose profile is similar to mine.

Fortunately, I go less and less to the "dark places," though my mind does go there when I wake in the middle of the night.

I have an appointment at the BI with oncologists, and a second opinion set up at Dana Farber, so I am covered on that side. Then I need to get alternative approaches in order (acupuncture, nutrition, etc.). Actually, I made those appointments, but they are tentative based on the chemo schedule. I also want to do chinese herbs, healing yoga, yada yada yada.

For good or bad, this has put me in touch with old friends who have walked this path. I still get tired in the afternoons so I'm trying to prioritize and get things done in the mornings. I'm also trying to stay in the moment.

That's about it from here! Hope you all are well.

Once the chemo sessions start (I don't know when that will be, Dec or Jan), I will most likely need more help than I do now. So, if you are interested and able, stay tuned!

My husband jokes that maybe he will get some of Tania's enchiladas out of this! ha ha

Is this truly colon cancer?

this definitely sucks right now. i am hoping that I soon get to the rallying stage!

Here is today's scary thing: From everything I read, the cancer starts in the polyp, moves into the colon wall, then to the lymph nodes.

Mine was in the polyp, NOT in the colon wall, and then, one lymph node was bad.

So, is someplace else also draining into that lymph node, and is there cancer THERE? It it colon cancer or another cancer? I think I am in store for more tests.

If it is colon cancer, this is stage three, which isn't great. If it is another cancer, who knows what is going on.

Stay tuned...thank you SO MUCH for your support!

Cancer spread to lymph nodes

Hi guys,

Thanks so much for your note and support. I'm writing to you because it seems to help, and I'm actually quite bummed right now, probably the most bummed I've been this whole journey.

It looks like the cancer was found in one of the lymph nodes. The good news is that it is only one. The bad news is that it spread, which means chemo and radiation. I'm still sorting through doctor phone calls and names.

Well, I thought I wanted to write, but I don't know what else to say.
Marie

Setting Goals after Surgery

Hi everyone,

I haven't made it through my e-mail but I have definitely felt your love and support over the past week. Thank you so much for that.

Thank you also for the beautiful flower arrangement. Not only did it take my breath away, it was the only time during the entire experience that I actually cried. I was so touched. You guys are all so amazing.

I'm slowly able to do a bit more each day. I have to say that I am so glad to be out of the hospital. I don't know if every floor is like this, but I was on the floor of folks who had gastrointestinal surgery. Which means that I am pretty sure that the goal of every single person there was to pass gas. I about buried my face in the flowers most of the time!

I do have some reflections. One is that I measure myself by comparison way more than I thought I did!

So, I could do a little walk down the hallway. Okay, it took me 50 steps and 5 - 10 minutes to do what normally would take 10 steps and a few seconds. But I felt like the hare compared to the tortoises. Then I would go back and nap for two hours after all my exertion! I couldn't talk on the phone or even sit up, and getting washed, when given the opportunity, was my big activity of the day.

Then, the 25-year-old checked in across the hall. She had this long dark wavy hair and operated command central. She sat up straight, had her laptop open to her left, while she talked on her cellphone. I heard her say that she still wasn't allowed solid food yet, so I figured that her surgery was even more recent than mine. One time, I noticed her hair wrapped in a towel; she had just washed it. It was a distant dream for me to be able to wash my hair, and there she was, with freshly washed hair! When she unwrapped it, it reminded me of the Breck girl ads (I'm showing my age). Time slowed and her hair just tossled down her back as she shook her head and I thought she was amazingly beautiful.

It hurt to laugh, or I would have laughed out loud at myself. First off, I had to acknowledge that 20 years does make a difference and I was forced to admit that, though I like to think I am still 25, I'm not.

Plus, here I was, in this stinky, yukky hospital ward, and thinking that this woman was golden. Because in comparison, I guess she was. And then realized that right now, this was my world, and she represented sort of the highest ideal in that context. Right then, I decided that I needed a bigger world! And, at the most basic level, probably should stop comparing myself and just set my own goals.

So, when the doctors did their rounds, I started asking what I needed to do that day to get closer to getting home. I made those my new goals and I worked on that. I did the walking they suggested, ate what they told me to eat, etc. I set my goals based on that, and was feeling pretty good about myself.

Finally, when I was told that I looked good and could leave, I patted myself on the back for making progress. As the Universe has it, the doctors immediately went to my roommate, who I personally thought wasn't doing so well. She almost never got out of bed and mostly moaned alot. They told her that she could go home that day, too, if she wanted to. I was instantly deflated for a moment, until I realized that I was still comparing myself to others as a measure!!!! Always something to work on...

Again, you guys, thank you so much for your support, your listening, your positive energy, and your love. It carried me the whole way through this.

I have, I'm told, about six weeks of recovery. I haven't left the second floor of my house yet, but I will soon, and will take it from there.

Love, Marie

P.S. If you caught Oprah on Monday, Randy's original speech is MUCH better than the reprise he gave on Oprah. I think it is hard to do a "re-do" of something that has such emotional depth and content.

Thank you, and fun coincidence

Hi everyone,

I've been horrible at e-mail lately but have been reading everything. Thank you so much for all your positive energy and thoughts. It means the world to me and I am really riding on your strength here.

AND...Here is something weird. On the day of my diagnosis, I saw Randy Pausch's lecture (which I told you about). He told me today that he will be on Oprah on Monday (not sure in what capacity, maybe part of a broader topic?), which is when I am having my surgery. Isn't that wild?

Wishing you all a happy Friday and wonderful Head-of-the-Charles weekend.
Marie

I have results

It was deja vu all over again -- the doctor told me to call, so I called. The office told me that results are not ready until a week to ten days, then basically hung up. You know - the usual thing when you have a kind-hearted doctor but the front officestaff is filled with blockers.

THEN...the doctor called me tonight. At 8:30 on a Friday - that never means good news. The polyp was, indeed, cancerous. He feels like they got it all, but it was really close to the colon wall and recommends surgery to be sure. He will coordinate with my PCP and we'll see what the next steps are.

It is nice to have an answer, so at least I know where to go from here.

On another, somewhat related note, I don't know if any of you read the article on Randy Pausch in yesterday's Wall Street Journal. He is a professor at CMU, and I was friends with him when I was an undergrad and he was a grad student. (He is good friends with my boyfriend from that time.) He was also on Good Morning America this morning.

Anyway, he gave a great talk -- if you are curious, here is the link:
http://www.etc.cmu.edu/global_news/?q=node/42

Universities often have a "last lecture series" where they invite professors to give a lecture that they would give if it were their last lecture. In Randy's case, it really may be his last lecture, as he is dying of pancreatic cancer at age 46. It is, however, quite uplifting and energizing and funny.

I was coming off the good feelings of that lecture, which softened the blow a bit and actually made me feel so lucky that they found this. So, an unlikely role model at a good time, and a reminder to live while we are living!

That's it for now,

Love, Marie

From Anemia to Cancerous Polyp

Hi everyone,

I hope this finds all of you well and happy! I wanted to follow up on
my colonoscopy e-mail. I had the procedure done on Tuesday.

First of all, thank you SO MUCH for all the suggestions and support!
It was really helpful.

I was initially sent for a colonoscopy because I was diagnosed with
severe anemia, and they wanted to see if it was coming from there.

The good news is, they found the source of the anemia, which was a
large, bleeding polyp. They removed it. Yay.

The bad news is, the doctor thinks it looks cancerous. The results
will be ready on Friday, Monday at the latest. And then we'll know more.

So...here we go again. The waiting game. We've all been there, for
one reason or another! This reminds me so much of fertility, all over
again, waiting for results.

The other good news (to end on a high note!) is that colon cancer is
completely curable if caught early, which this would be. Yay again.

Thanks so much for all of your support, and for listening and being
there. I'll follow up with the results when I get them.

Love, Marie