How I hear the scan results

After my CT scan on Friday, I will be in vacation mode! I will be off chemo for at least three weeks straight. I’m so excited. Today I felt fantastic – I was able to go outside and move around and really do anything I wanted. I got to see my son in yet another school performance (yay!) then randomly ran into TWO friends at Whole Foods. What a great start to the day! I live on that kind of energy.

Back to the CT scan – I had a choice to have the scan this week, or to wait until after my doctor’s vacation and have the scan then. I chose this week – I wanted it to be as close to my most recent chemo as I could bear. But that meant that I wouldn’t get the results for over two weeks.

That was fine with me, and the nurse practitioner noted that that was unusual, to wait that long. So I thought I would explain, in case you are wondering or in case this helps you.

When I first started down this road, I couldn’t wait to hear the results. In fact, I would ask if they would let my husband (a radiologist) in the room during the scan so that he could read the scan as they did it. On days when he couldn’t be there, I would request a disk of the scan and bring it home for him to read.

At some point, he admitted that this was stressful for him, so I started to wait until my doctor could tell me the results, ideally as soon as possible after the scan.

One of the things that I HATED about that appointment was this: I would be feeling fabulous, walk into the exam room where they would give me “news,” and that news would dictate how I felt when I left the room. It was like that room was some transformation booth: I walked in one way, and walked out another, unpredictable way. I disliked the powerless feeling of that situation.

So, I turned it over in my mind several different ways and decided that I was letting their projection of the future, based on my scan results, determine how I feel. And I needed to change that. So I started to look at the “news” as simply data. The scan information was data, and their feelings about that data were simply their points of view.

Receiving scans about every six weeks, I had lots of opportunities to practice listening to the results in this new way. I would try to distinguish which was data and which was their point of view. Then I would scan my body to see how I felt. Did I physically feel any different than when I walked in? After doing this a few times, I noticed that I generally felt good, and that feeling outweighed any data from the scans.

The other way I looked at this was this: No matter what they said, someone, somewhere was receiving worse news. That person would prefer to be hearing my news.

So I had to make a decision this time: Have the scan sooner and wait to hear the results? Or wait to have the scan, though the results might be ambiguous: Is the chemo working? Was it simply that I took a break from chemo?

I decided to have the scan as soon as possible after chemo, because I want a chance to show that the chemo is working. I decided that I could wait to hear the data.

Really, the most important data is that I am feeling good. And I finally am feeling really great! So I’m holding that closely and treasuring that.

Now, I talk a good game. Let’s see how it goes. But I get a chance to practice a new way of being. And it will help to have this wonderful break!

Thanks for your prayers for a good scan! Here’s hoping that you can, today, trust your inner feeling more than anything anyone projects onto you.

Love,
Marie

All quiet on the Western front

I apologize for not writing for a bit – I was in a chemo fog until tonight.

On Tuesday, Jodi joined me for the full day of my infusion. Linnea unfortunately couldn’t make it (schedule glitch) but I got to meet Tom! He was on California time and his appointment wasn’t until the afternoon, but he kindly came early to meet me while I was still conscious.

Tons of good things that came from Tom’s presence, not just for me but from others who got to talk with him in the waiting room. He’s really smart and knowledgeable about the pipeline of drugs. He is optimistic and easy to talk with. It was like he was making everyone feel better.

Tom and me Oct 2014

And – he agreed to stay while I got my CT results. As you might imagine, if the doctor gives you news that stuns you, you still have to function and ask the doctor relevant questions before he moves onto the next patient. Sometimes, there is a decision to be made in that moment. I wasn’t too worried about the scan, but I have been surprised before. Tom agreed to go to my appointment with Jodi and me so that, if necessary, Jodi could help me deal with my stunned state (I get the feeling that Jodi can handle just about any emotional situation) while Tom asked questions and gathered data.

But, all good – the scan showed stable results! Tom moved onto his next thing and Jodi stayed with me for the rest of the day (no small feat – involves seeing me in a state I don’t share with the general public) and drove me home.

I’m so grateful for that they were both there in person and that you were with me through the wait. Thank you thank you!!!!

Love,
Marie

Chemo resumes next week

Thank you for your prayers and your good wishes, your presence, your texts, your emails, your comments. I feel a bit like you are cheering me up Heartbreak Hill on the Boston Marathon route – it definitely keeps me going.

The good news is that everything we covered today with the oncologist was familiar territory. Yes, there is growth, but all in the areas where there was known tumor. Yes, I feel bloated, but they found no ascites (fluid that the tumors can generate) so it is likely due to tumor on my colon slowing down the works. And yes, I am short of breath, but that is probably due to my diaphragm being squeezed from all the crowding in that space, not because of new lung tumors as I had feared. And yes, my CEA (tumor marker in my blood) was higher, but it has been that high before and we got it back down.

In fact, it was hard to find the spots on my lungs, so that was good news. As for chemo, there was no room at the inn today or tomorrow, and I don’t want to have chemo Thursday – Saturday, so I will start next Tuesday. That is the physical side. The emotional and spiritual sides of me feel strong and happy. I poked into the dark and dusty corners of my mind and heart (places I usually don’t like to examine without a trained professional) to see if any scary thoughts or emotions were hiding there. But I really do feel good. My amazing cousin, her son and her fabulous friend were all visiting today and that makes me happy. Life overall is good. While I am not crazy about going back on chemo, I’m glad to have it as an option. The doctor made a remark about the gastrointestinal floor being the busiest one and how they are working to provide more space. I inferred that meant that they see a lot of GI cancers. So keep those intestines moving! Eat good foods, drink lots of water and keep your body moving. Get tested when you should and if you feel the need for a test and you can’t seem to get it, advocate for yourself or change doctors. You don’t want to be another one in this crowd!

I spent the past week preparing seemingly endless meals and snacks for the kids and their friends, delivering yet another glass of lemonade to a thirsty child, wiping sticky popsicle drips off the kitchen floor, telling the kids to go play outside, driving them to the pool, taking care of various animals. I wondered if I was frittering away my chemo holiday.

As I sat here today with the dog at my feet and my son on my lap, trying to write this post despite constant interruptions, I got this message.

The days go by with so many little things that don’t seem to matter
until they’re no longer there
and suddenly, they’re all that ever mattered.
-from StoryPeople by Brian Andreas

Enjoy the little things that make up your day. They matter. They are love and life.

Blessings and love always,
Marie

Give thanks in all circumstances

Thank you for your prayers and good thoughts, for making me laugh and expanding my world.

Spring arrived in New England! The blooming flowers and trees fill me with hope for all kinds of wonderful new life and beginnings and made me optimistic about my CT scan.

Today I met with my oncologist to get the results of my CT scan. I have been doing chemo since last August. Plus over the past week, I’ve had problems with my hands and feet that I believe are side effects. My body could use a break.

Normally, I would try to brace myself for bad news. But lately, I have been aiming to embrace ALL of life: the stuff that feels good and is fun, and the stuff that might not feel so wonderful. I want to embrace it, move through it, give thanks for it all.

cropped-img_3475.jpg

As with many of my bright ideas, I try them out first on my kids.

Before bed, I generally annoy the kids by asking them to tell me one good thing about their day. I rephrase it as “something that makes you feel good inside when you remember it” and “something that makes you smile” to try to encourage their participation in this activity. They don’t like to share much information with me, and they definitely don’t reflect out loud, but they eventually give in and begrudgingly answer.

Then I move onto asking them about one thing that wasn’t quite so good, or something that could have gone better. Most people don’t like to remember the bad, especially before bed, so this part often feels a little funny, but I also think it is important to face these times and then move on.

You can see why they prefer that their father puts them to bed.

The other night, I lay next to one of the boys and asked him to tell me something good about his day.

“Gymnastics,” was his eventual answer.

“How about something that wasn’t so fun?”

He paused, long enough that I decided to offer a suggestion rather than tease it out of him. “Maybe your coach yelling at you?” He looked at me and I was afraid that tears would follow.

In my new inspiration of embracing it all and giving thanks continually, I decided that I had to help him give thanks for the “not so fun.” So I asked, “Can you find something good in his yelling?”

He thought for a moment, then smiled and said, “His coaching makes me a better gymnast.”

I was really impressed with his ability to see good in something that he didn’t want, that hurt his feelings and made him angry. I can’t get over my own self that fast.

But today at Dana Farber, it was my turn to try, and I vowed that, regardless of the CT results, I would give thanks to God, even as I prayed for smaller (or totally absent) tumors.

I’m so happy to report that all in my abdomen and pelvis is essentially stable. They did see something that looks like a tiny dot in a few places in my lungs but we (including my incredibly smart and very conservative husband) are all comfortable with “watch and wait” on that.

Weirdly, I wasn’t worried. I remained totally in the framework of “giving thanks for all things” and didn’t feel like I had to brace myself. Woo hoo!

Of course, it is still easier to give thanks for that which feels good. And I give thanks always for you. Thank you for helping me to feel better through this whole process. And thank God for this amazing life.

I’m officially on chemo holiday and my next scan is at the end of June!

Sending you love and peace and light and joy,
Marie

 

Everything stable

My CT scan results show all tumors stable, and my tumor marker is slightly lower. Thank you deeply for your prayers and good wishes!

We discussed taking a chemo break, but decided instead to continue with chemo for about 6 – 8 more sessions, rescan and, assuming stable or better, take a break over the summer.

Thank you again for all you do to hold space for these miracles.

Love,
Marie

Preliminary test results

When I left Dana Farber, I got a copy of the disk with my CT scan. Since Tiron is a radiologist, he is often able to look at the studies at home and we get a preview.

The CT center inadvertantly gave me only part of the study, so we compared that part to last time. It doesn’t look the way I want it to, and while that initially bummed me out, right now, I am choosing to focus on the fact that there is work to be done. The specifics don’t matter so much.

I’m also thinking that, when I go in to see the oncologist on Tuesday, I don’t want to know exactly what he sees on the films. I just want to do chemo (and all my other “alternative” stuff) and take it from there.

I suppose that, while I was initially resistant, I am now glad that we did this baseline CT study. Keep those prayers coming!

Love,

Marie