Tuesday, November 24, 2009

Home again, home again, jiggity jig

This is a HUGE THANK YOU to this rockin' group! I really appreciate EVERYTHING you did and I wanted to tell you that those positive vibes really carried me through, in ways both specific and non-specific.

For you scientists, here are some specifics:

- I got a GREAT team at the hospital. Every single person was fantastic. Given the number of people who worked on me on Friday and throughout the weekend, this beats random odds.
- The IV person understood that I am a hard stick and was great about only sticking me twice.
- I didn't cry before they put me under. I didn't even feel like I needed to! This is normally a hugely emotional moment for a control freak like myself, but I felt like I was being safely held. Thank you!
- The operation went smoothly and was a success.
- I was told to expect to be in the hospital between 4 and 7 days; I got out in three (and, two, if you don't count my surgery day).
- I am at home, up and walking around, and not depressed (I was pretty depressed after my last surgery).

In addition to all that, this time around was so much easier in so many ways that I can't list.

I do believe that this group can change the world. Try it in your little piece, anywhere you want to just impact and have a little fun. I know that those good vibes are pushing good things forward every day. Thank you for sharing them with me.

Much love,

Thursday, November 19, 2009

Tapping into the well

Hi everyone,

I have a surgery coming up on Friday, Nov 20 at 11:30 a.m. (assuming all goes according to schedule).

Last time through, I tried to do it without the power of this group, and, frankly, I didn't do it so well on my own. I'm finally getting the message that life is a team sport!

If you are getting this e-mail, you have been helpful or interested in the past, or faked it really well. So if you have a chance, please say a prayer or send some positive vibes this way on Friday, or anytime over the weekend (as I will be in the hospital for a few days).

The short story: I had a recurrence in August, and a huge surgery to remove the tumor and all the surrounding area. That area was rebuilt, and I have a temporary ostomy bag. My surgery tomorrow, to remove the ostomy bag and re-attach my intestine, is relatively minor compared to my last surgery. But, as the joke goes, minor surgery is someone else's!

So, I'm taking nothing for granted and would love your support.

Thanks so much!

Love, Marie

Friday, October 2, 2009

CEA now considered normal...barely

Thank you so much for your supportive messages, your kind words, positive thoughts, prayers, phone calls, visits, wisdom, EVERYTHING. Thank you for letting me air my frustration and fears. You guys are such an awesome group!

I got my blood numbers and at 3.4, I'm told that they are below what is considered normal and that is good.

While I am relieved at the trend in the right direction, I can't just settle for that, right? I grilled the doctor on the fact that everything I've read says that 2.5 and below is normal. They assured me that it depends on the labs and other things, and that for patients at MGH, 3.5 and below is considered normal. It does make me feel a bit like a remedial student, not expected to do the things that "normal" kids can!

Anyway, no more tests and blood tests for now. whew. Thank you so much for talking me off the ledge.

My next step: To make sure that my last surgery healed so that they can reattach my colon. I was supposed to do that on Monday but my butt is still so sore that I can't put it through that procedure. (They shoot a liquid into it. Lovely!) So I'm waiting on that for a few weeks.....One step at a time.

I have to say that getting positive news does so much for my attitude toward life. I can easily see how this could get someone totally down, and can really appreciate how heroic (for lack of a better word) it is for someone to have a positive attitude when facing a stream of bad news.

For now, though, I'm so happy to be where I am.

Much love to all of you,

Monday, September 14, 2009

Coming out of my isolation and slowly resurfacing

You guys are getting hard to ignore! I don't know how to say thank you for hanging in there with me, in so many ways. All the flowers have been a beautiful and touching surprise (We are here! made me cry!), and the e-mails and candle-lighting and prayers.....it's amazing and overwhelming. And, as much as I want to crawl in my hole, I'm starting to feel positively rude by not saying anything. Thank you for forcing me out a bit, and for shining a light.

This surgery has been my hardest so far, both physically and emotionally. Definitely hardest emotionally. I came out of my other surgeries feeling a bit like Superwoman ("This cancer can't get me down!") and now I feel more like, well, woman ("Yikes --I'm human").

I've spent alot of time feeling very mortal, wondering how long I will live, wondering what to do next. Seeing cancer and death everywhere. Feeling sorry for myself and the kids. Mostly feeling sorry for myself
and the kids.

The surgery was open abdominal surgery, meaning the cut runs from belly to pubic bone. I'm feeling better but still so sore
there! And I have this "bag" hanging off my belly. I guess it is convenient, but feels so weird. My intestine sticks out of my abs and pours into that. Weird. And grosses me out every time I change it (about every four days). They say that I can wear normal clothes soon, but I can't even imagine it! You know how, when you eat gassy foods, your belly expands? Well, this bag expands, but only on one side of my body, so that looks weird AND there is no way to control the gas as it comes out, so THAT is funky, too (though, it doesn't smell because the bag contains it -- you just get the sound). And the "rebuilt" part of my body inside my butt gets sore, too! So, alot of activity there.

I'm finally walking a bit more. Still slowly, and not far, but it is progress - yay!

The path report was overall good. The lymph nodes were clean, so that is great. But the tumor ran to one edge. The doctors do not recommend more radiation and chemo -- yay -- but, here is the hard part, they tell me that they will give it to me if I want it. Which means, it is up to me. More responsibility than I think I want. I soooo do not want to do more chemo. The memory of it is too awful and fresh. At the same time, my sons fall asleep next to me saying, "I love you so much" and I look at them and think, can I tell them that I did everything possible?

On the other hand, I really want to get back to normal life. There is no proof that more chemo will really do anything. I have another meeting tomorrow to discuss this with the doctors and am trying to get my questions in order, to try and figure it out.

There is more, though. I have felt so disconnected from my intuition, from God, from everything that I trust with my life. I feel like I am getting signs, finally, that I am connected to the Universe. I can tell you more about them if I haven't already. So I am trusting and hoping for a sign about the right decision to make next.

Those are all the logistics. But, in my little depression and isolation, I think I made it even worse by not connecting with anyone at all. Thank you so much for being there. I really tried to crawl into a hole, and you wouldn't let me, and I appreciate that so much. Thank you from the bottom of my heart, and I thank you with my life.

I'm going outside to breathe some fresh air, and will be back online soon.

Much love,

Monday, August 31, 2009

Found the tumor via surgery!

To those who have written recently, thank you so much for your notes, prayers and concern. I can't tell you how much it helps!

Catching up over the past couple of months:

In May, my husband had surgery for thyroid cancer, and had his thyroid removed. That same week, my blood tumor marker started to rise, indicating possible cancer. The PET CT showed some "activity", but subsequent ultrasounds and an MRI could not find a tumor. I wrote it off as a medical miracle.

In July, I got re-tested, and my blood tumor marker was high enough to indicate definite cancer. A new PET CT showed "activity", so we skipped the ultrasound and MRI and went straight to surgery. There was a risk that they would find nothing, so they left it up to me, and I decided to take that risk and move forward with the surgery.

It was almost comical to try scheduling my husband's radiation therapy (where he cannot be around other humans for quite a few days) and my surgery (where I will need his help). Plus, it is August and the surgeon was planning her vacation.

The week before surgery, Tiron had radiation therapy, which required him to be in isolation (but not in the hospital, go figure). So I left town with the boys and had a good time visiting relatives. When I returned, I went into the hospital for my surgery.

The surgery, overall, went well. They found a pea-sized tumor in my rectal area, and removed it along with my entire rectum, lymph nodes and fatty tissue. I lost a ton of weight as a result, but I don't recommend this as a weight loss strategy! It was open abdominal surgery, and, wow, I'm sore! They were able to reattach things, and I have a temporary "bag" while that area heals. I'm grateful that this is temporary.

The bag itself is a weird concept. I had no idea, but they actually PULL YOUR SMALL INTESTINE THROUGH YOUR ABS. It sticks out of my stomach like a tongue. Weird. And the bag stocks to my skin and hangs from that and catches whatever comes out.

The bag itself is easy to manage, but psychologically, this is hard to get used to.

The other hard psychological thing is simply going through all this again. I'm not bouncing back the way I have in the past, with strong faith in God and in the future. I worry whether I will see the boys grow up, and realize more acutely that people do die young. It makes me really sad, and while I try to change my thoughts, these are the ones that come creeping in.

I also feel a bit removed from God and from the greater good of the Universe, though I do keep getting various signs. Like, I was in bed in the hospital, feeling sorry for myself with this bag, when my much younger roommate, almost as though she could read my thoughts, volunteered to tell her story and that hers was permanent. And she was dealing with it much better than I was.

Or, when I was in the hospital, I remember really needing to connect with this guy, Ray. Ray was one of the guys who built our house, not even the main lead guy, just here occasionally, but I always got a particular calm when he was around, and he prayed for me last time around. I remember really needing to see him, and thinking, oh, well. I can't just call him.

When I got home, Tiron told me that Bob was going to be here soon to fix the screen doors. But Bob happened to send Ray. It was like an answer to my prayers. So, there are those events, and I'm trying to grab onto those and claw my way back to some place of trust and peace. But I'm not there yet.

My parents are here to help with the kids and the running of the house, and the neighborhood has really banded to together and they are delivering meals. Logistically, we are doing okay, and I just have to pull myself out of this ditch! So do send prayers, positive thoughts, whatever you can spare!

I am waiting for the doctors to call today with the results of the pathology report, and it is making me more anxious than I can remember being.

I hope you all are doing well! It has been a glorious summer overall, and I LOVE this weather.

Much love,

Friday, August 21, 2009

Preliminary results are in, and no clear answers

Well, just after I posted, the phone rang and one of my doctors was kindly calling me with preliminary results. They've been putting off calling me because they don't yet have a recommended path forward. Yikes.

Here is the bottom line: If "cancer free" is the best news, this is second best on the list. Basically, the lymph nodes are clean (yay) but one margin is not. This means, they found tumor cells near the edge of the area they cut, so they need to assume that there are some left behind (little rectal humor there).

Of all the margins, this is the "best" one to still have tumor cells because there are no adjacent organs, but no one quite knows what to do about it. They will discuss it at a conference at the hospital this week to get the recommendation of other doctors.

So, options are, watch and wait (meaning, let the tumor make the next move), radiate, or do chemo, or any combination. More surgery for this is not an option, at least right now.

No clear answers, but at least there is something....

Love, Marie

Thursday, May 28, 2009

Choosing my son's poetry over starting radiation

Thank you so much for your notes and support. I haven't had a chance to write -- I find that, this time around, I am trying to stay more focused on my life and make the treatments more of a side thing, at least as much as I can. They do kind of take over.

Like today -- they wanted to schedule the set-up for my radiation for tomorrow (Thursday) morning. I appreciated getting it all overwith. At the same time, we are having this breakfast at Aidan's school, and he is reading a poem, and I didn't want to miss it. I did wonder, am I trading this one poem for a chance at a longer life? But the doctor said that if that were my son, he would go to the school and do this appt next week. It pushes back my chemo by a week, which I don't like, but I do want to make things as normal as possible for the kids. And me. I would hate to miss his poetry reading!

So far this week -- I met with the surgeon, who tried to get a biopsy. But, she couldn't find the tumor to biopsy it. I'm not convinced that it just disappeared, and neither are they, so I'm up for another try for a biopsy on Monday. These are not fun!

Today, I met with my oncologist and my radiologist oncologist for over an hour to talk about my treatment plan. So that was useful.

MRI on Friday!

Tuesday, May 26, 2009

More tests

I'm so sorry I didn't get back to you sooner -- things have been crazy and I've just been getting used to all the news. Plus, my hip is hurting like crazy from my bone marrow biopsy, but more on that to follow.

Let's see....there is good news and there is "could be worse" news.

The good news is that it isn't pancreatic or any of the other scary cancers that were possible. Yay!

I guess that is also the "could be worse" news. There is a local recurrence (meaning, same place as last time), and it is treatable. Now that the dust has settled, I'm wondering why we only found it now; why, if it wasn't there before then why it grew so much in three months; and other scary things. I'm trying not to go there -- from what I've discerned, we don't know enough about cancer to know.

BUT, we do have a path forward. My week is filled with tests. Last Friday after the diagnosis, I had a bone marrow biopsy to see why my white count remains low. Not fun, but bearable.

Today (at 9 am after the holiday weekend), I had an appointment with the surgeon. She was supposed to biopsy this thing (it looks like 3 centimeters) by going in the out door (so to speak) but couldn't find it. Not the most fun way to spend my morning! The good news, though, is that the location of the tumor looks high enough in my colon that I hopefully will not need a bag after surgery.

Tomorrow, I have an appointment with my oncologist and the radiation oncologist. And on Friday, I have an MRI.

Funny story: I was supposed to have the MRI on my birthday. When I heard that, I thought, not my first choice, but okay. Then they said, "Do you need an anal probe?" and I thought, they have got to come up with a better idea for a birthday gift. Thankfully, I don't need an anal probe after all.

Back on topic: After all these tests, assuming that all is as suspected, I will! have six weeks of combined chemo and radiation. The chemo this time will be wearing the bag for five days a week, and I won't sit in the hospital for that other part of chemo. I'll go into the hospital every day for radiation. This is all to shrink the tumor.

Then I have six weeks off, for the chemo to continue to work and for my body to get strong for surgery. Then I have surgery to remove the tumor. While I am open, they will irradiate the area to basically kill every living cell in that part of my body.

I think that is it!

I'm a bit bummed about wearing that bag during the summer, I have to say, and am trying to stay focused on the fact that I can and don't need to be in the hospital to get chemo instead.

On Friday, a truck got stuck in front of our house, blocking our driveway. We couldn't get out for my doctor appointment so we borrowed my in-laws' car. After we got to the hospital, I ran into my oncologist before my appointment, and I saw in her eyes that the news wasn't great.

I supposed that, if they didn't find anything, I would still be worried, so maybe this is good!


Love, Marie

Wednesday, May 20, 2009

After the PET CT

Thank you so much for the great vibes! I did the whole PET CT routine myself and I think I did okay! I kept picturing a friend in the chair next to me, and that made me smile. But I'm glad you weren't there. Though the official line on the radiation I got is that it is okay to be around the general public, the nurse, unprompted, told me that her off-the-record opinion is that I should stay away from people as much as possible for 20 hours. So I am.

Because I am a hard stick, I arrived early to get an IV nurse. She did this really cool thing to try and find a vein -- instead of the rubber tourniquet, they used a blood pressure cuff and found a vein, in my arm, that I don't think anyone's stuck before. And did it, first try. That nurse was awesome.

The radioactive stuff that they injected into my veins came in this metal case with extra padding inside to protect whomever is carrying it. Lovely thought. No wonder my veins rebel. They probably wonder what toxic chemical is coming next.

The people were really nice, and the test went smoothly.

After the whole thing, I went to Whole Foods to get big bottles of water and some organic greens to balance out the whole experience.

Results are in on Friday! We are visualizing randomly fluctuating cea levels for no apparent reason.

Love to you all,

Tuesday, May 5, 2009

Moderately high CEA

I'm bumming out.

One of my lovely oncologists called today. Sigh. My first impulse is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.

CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google; I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for). My doctors feel anything below 3.4 is good.

My white counts have gone low again, too.

I hung up the phone and cried.

Then, life continues. The phone rang again. I thought it was the doctor with more news. But, it was a friend. We hadn't talked in awhile and she was on her way to pick up her kids, with a few minutes to spare. When she innocently asked how I was doing, I burst into tears again. But I have to admit, it felt so good to talk with her. I am grateful that she acted on her inspiration to call me at that moment. It was just what I needed.

Connecting with Susan gave me energy to take the boys and do some retail therapy at Winston's Flowers. A few containers, plants, and flowers later, I felt a bit vindicated. The boys had a great time playing in the water fountains and were soaked through. They wanted to ride home naked. Fine with me.

When I drove up to the dock to load my purchases into the car, the saleswoman marveled at my calm. If only she knew.

I'm getting re-tested next week and hoping this is all just a fire drill.

Monday, May 4, 2009

CEA levels higher

Once again, a call directly from a doctor. Sigh. My first thought is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.

CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google, I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for).

I'm getting re-tested next week and hoping this is all just a fire drill.

Wednesday, January 21, 2009

CT scan is clean!

Yesterday was the inauguration of Barack Obama, our new president and a symbol of hope and renewal for our country. The changeover occurs at noon, whether or not he has been sworn in.

Yesterday, I had my six-month check-up appointment with my oncologist to get the results of my CT scan. In the waiting room, I met a man, his wife and brother. The man was in the first third of his treatment for colon cancer. I could see myself in him, last year at this time, and I could feel the difference in myself from then till now.

At five minutes to 12, I sat with my husband and oncologist in her office. We commented on how we were missing the inauguration, then she told me that my CT scan showed no sign of cancer. YAY!

We talked about other things -- the results of my blood tests, my continued low white count, the little and thankfully unchanged things they see in my lungs and thyroid, and kids. Always kids -- a neutral topic that somehow connects some of us.

And then, we left, with a new lease on life and a new president!

Monday, January 12, 2009

Ms Radiation

My periodontist requested a full mouth x-ray. Just a routine thing -- they like to have new ones done every three to five years.

So I called the dentist's office to schedule it. The conversation went something like this:
"You don't need to make an appointment. You can come in anytime tomorrow," they said.
"No problem. I have a CT scan in the morning, but I can come in the afternoon. Just drop by anytime?"

Why on earth I mentioned the CT scan, who knows. Why would they care? But good thing, because the response was,
"Oh, we don't like to give you too much radiation in one day."

Yikes. I hadn't thought about that. Well, I did, but chose to ignore it, filing under the necessity of modern living.

"Okay....hmmm..." I looked at my calendar. I now wanted some distance between those two appointments. "How about early February?"

"Sure. February 5th?"
"Oh....I have a mammogram that day." What am I, Ms Radiation these days? This is kind of scary.
I think a bit then say, "This isn't urgent. Let's just do it in March. I'll give you a call."

Wow. Between all these tests, I'll be radiated from my pelvis up. Would it be called a "healthy glow"?

Friday, January 9, 2009

Anticipating my six month CT check-up

So, my CT scan is coming up. This is my six-month check-up after finishing chemo. I have the scan next Tuesday. Then the following Tuesday, Inauguration Day, I meet with my oncologist to get the results. In fact, my appointment is at 11:30 am, just about the time of the inauguration! I hope this is the beginning of a wonderful new phase for all of us.

This weekend, I started to obsessively plan trips. I'm not someone with wanderlust, so this isn't normal behavior for me. After recording every day off, long weekend and school vacation between now and April, I became a woman obsessed with planning places to go and things to do. I specifically wanted places that were fun, interesting, different, and potentially non-refundable. On top of that, I found a blank spot in my schedule and committed to taking a course this semester. Because, if I plan these things, there is a future, right?

I'm realizing that planning these trips is my coping mechanism for dealing with the stress of any upcoming tests. While I can often pretend that cancer is behind me, the next few weeks contain vivid reminders that I live under a bit of a cloud. There is my CT scan, and the follow-up appointment for that. Then, my mammogram (yup, still doing those!) and my follow-up for that. The good news is that these are all in a span of a few weeks, then it is (fingers crossed, lotsa prayers) back to life as usual.

But for now, I'm trying to drink lots of water so that they can more easily find a vein to get blood out, contrast in. I'm trying to relax. And I'm eating lots of chocolate!