Onto the next big thing…

Consider it pure joy, my brothers, whenever you face trials of many kinds.
James 1:2

This timely sentence popped up on my Facebook feed this morning. I so appreciate your support, especially through this most recent stretch of medical appointments, so wanted to share the news from last week.

On Tuesday, we saw my oncologist to get the results of my CT scan. Basically, all of the tumors have grown, so this chemo apparently isn’t working. Bummer for that, and also because my quality of life was so much better on this chemo than on anything else I’ve done!

I need to add that, before this most recent chemo (Erbitux), I was doing FOLFIRI and I recognize that I was super lucky with that. For most people, FOLFIRI tends to work for months, but I, somehow, got SEVEN YEARS out of it. I remain grateful for that. I guess I expected the same for this new one.

Thankfully, I have a few other chemo options, and we are looking into immunotherapy options as well.

So no chemo this week. The anxiety is enough – ha ha. We will use the time to make a decision and then move forward with the chosen chemo after that.

The other good news is that I was able to attend our son’s fourth grade school play. Before the play started, I talked with a mom who was sitting nearby. Making conversation, I asked if she worked in the city. AND, not only does she work in the city, but she heads a research lab for immunotherapy drug development and trials, at the hospital affiliated with Dana Farber! Wow. On top of all that, the play itself was actually enjoyable and fun, and he did a great job.

(Next part is a little explicit – skip the rest if you are easily queasy.)

This weekend is a little challenging so far, as I am having trouble, again, urinating. I thought that the stents would fix this, but there is a tumor in my bladder which can throw off blood clots, and that can…block the path out. I’m drinking water to try and increase the pressure and push that blockage out of the way – I want to avoid another visit to the ER. Again, it is the simple things! Next time you run to the bathroom and feel like it is a bother, recognize that it is a good thing!

Not sure that I would say that my current trials are pure joy, but I will try to see them that way. Thanks again for all your prayers and support. I’m tired, so will wrap up here.

Love and blessings,
Marie

 

 

 

 

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