Scan results good

Thank you for your prayers and positive thoughts for my scan and the chemo that followed.

The scan itself went well, with only one small bit of excitement:

  • They accessed my port, then tested it by shooting saline in and testing for a blood return (does the blood flow out?). Fine.
  • I drank two bottles of contrast or whatever it is. Fine.
  • I lay down on the table to be scanned, and a tech flushed the port again and again checked for a return. But this time, no return. Ugh.
  • She called in a nurse, who tried again and again, moving my upper body into many positions. Still no return. They asked if I had a vein they could use. I have one vein in my hand they could potentially use; I protect that with my life. I panicked and told them that I would rather reschedule the scan.
  • So she tried one more time and, voila, blood return. The nurse was happily shocked – she said that she has never seen that. I simply gave thanks that it happened.
  • Scan itself then went smoothly, and no side effects from the contrast. After all the excitement, I slept much of the rest of the day.

Scan results were good:

Got the results on Tuesday, just before I went into chemo. Good news: No new spots. The current spots are all stable or smaller. 

(Sorry for the delayed report – between chemo and recovery, I’m just writing now.)

All three days of chemo went smoothly. Yay!

Thank you again for helping me through this week and for supporting my family. We really appreciate all of it!

Love,
Marie

Exceptional Patient

One of my favorite curious medical phrases was used on the old TV show Friends, when Monica and Chandler were having trouble conceiving a baby. The doctor told Monica that she had an “inhospitable uterus.” Monica’s response was something like, “I’ve always tried to be a good hostess!” So many medical terms can feel like blaming the patient, and even if we try not to take them personally, they can get into our psyche.

So, I prioritize how my doctor talks to me. My oncologist is generally upbeat and focuses on the positive, but I also know that I have no control over what comes out of his mouth. To protect myself, I often avoid topics that might head in an unpleasant direction.

Last week, however, a friend suggested that I talk with my doctor about how I am doing overall. I sometimes feel like I am out there on the skinny branches and, to be honest, I wanted to hear from him that I was doing a good job with all of this. But because asking “how am I doing?” would open me up to any answer he might give, I plunged in tentatively.

He responded that I am an “Exceptional Patient,” and I laughed out loud.

I know that he didn’t mean that I am scoring all A’s on some patient scorecard, and he certainly didn’t mean that I am so wonderfully compliant with his advice.

“Exceptional Patient” turns out to be medical speak for a patient who does not conform to the norm or to expectations.

He talked about his other Exceptional Patients and how the norm is constantly being redefined (because current statistics are based on past data, and all of us are creating new data every day we live). He explained that we don’t really know what creates an Exceptional Patient, though it involves some degree of luck regarding where the cancer migrates and how quickly it grows.

Even if it was a medical term and not the result of anything I specifically did, I liked hearing a positive phrase, especially a positive medical phrase. And chemo went pretty smoothly last week – I think that positive talk helped.

I would be remiss if I didn’t also acknowledge your positive thoughts and positive talk, which  keeps me going and often arrives just when I need lifting or encouragement to continue. Thank you. Your words are powerful and I’m sure you see the impact they have on others as you go through your day. What a gift you give. I hope that you are lifted by the good words of others as well.

Love and blessings,
Marie

Energy boost

After the last chemo, I laid around for more days than I would like. My energy was low and I didn’t have much to write; each day looked like the one before it.

Despite my low ability to get around, we decided to go ahead with a planned trip to Naples, Florida. Last Tuesday, with quite a bit of help, I was able to travel with my family. Once we arrived, I spent the first two days in bed while they explored the beach and pool. For me, it was more of the same, just new surroundings, but the kids were having fun and it was nice to have some new scenery.

A friend of mine, a wonderful woman I met on one of my trips to see John of God in Abadiania, Brazil, lives in Naples. She had JUST returned to town (again from Abadiania, Brazil) and texted me on Wednesday morning that, that very night, there would be a crystal bowl meditation with a focus on the Divine Mother. Did I want to go?

Wow. Crystal bowls, meditation and Divine Mother. Any one of those would get me there. Yes.

With some effort, I got dressed, put on make-up and made my way downstairs, where my friend picked me up.

The meditation was being held in a salt cave. More coolness (even literally). We arrived early so that I could sit near the large crystal gifted to the owner from John of God and the entities. (That is a story in itself.)

Before the session began, the owner showed my friend and me some of the bowls she would be playing, and I suddenly felt Shira beside me, smiling and laughing. Of course. Shira was the first one to introduce me to crystal bowls and sound healing, and she owned a few that she played beautifully. They gave her much joy. And another connection: Shira traveled to Brazil with my friend even before I did! I loved feeling her there with both of us.

The meditation lasted about an hour and a half, and afterwards, I got to visit with my friend, staying up later than I had in weeks. These events shifted my energy for the rest of the trip. The next day, I could get out of bed early, leave the room, enjoy the resort, and even eat a couple of real meals of solid food! That may not sound like much, but it was a big shift for me.

I remain surprised and grateful for the things that arise to keep me going. Deep gratitude to my friend for initiating all this.

And I hope that, as you read this, you know that you are on your way to your next energy boost as well. You never know where it will come from, or whose energy you will boost by your thoughtful actions!

Love,
Marie

Back on chemo

Thank you for your support for my crazy day yesterday. I appreciate the prayers, positive thoughts, email messages, texts, care for my children, and the many other ways that you helped me to get through the day.

The bottom line is no surprise: the tumors have grown, so I will go back on chemo starting either this Friday or on Tuesday. But that wasn’t the hard part.

In case you want a little window into the day, I’ll share this story with you.

My schedule looked like this:

10:15 blood draw
11:30 CT scan
2:00 Palliative care appointment (to deal with the pain)
4:00 Oncology appointment (to discuss CT scan results)

Of course, things don’t run exactly on time so I basically planned to spend the day at Dana Farber.

The blood draw and scan went fine, though they always leave me feeling a bit “off.” With this “off” feeling, I made my way to palliative care. Though I had a wonderful palliative care doctor at Mass General, this was my first time at Dana Farbar palliative care.

A nurse greeted me and it was apparent that she would be taking care of me, not a doctor. Okay.

Palliative care involves a lot of listening, so I assumed that she would need to get to know me first. I outlined some aspects that I felt were important, including the fact that I have a high pain threshold and avoid pain meds as much as possible. Only in the past week, I began taking two regular strength Tylenol at night for the pain, so that I could sleep. I outlined the thinking behind my strong emotional resistance to taking painkillers.

She asked me a lot of personal questions that she read from a sheet, which I figured were required, questions such as did I ever smoke, drink, smoke pot or do heroin.

Then she asked whether I had a health care proxy, where and under what circumstances I might like to die, when was the last time I discussed this with my health care proxy, and how were my children with all this. These questions felt a bit personal, especially given that I didn’t come here to discuss that and I didn’t have a relationship with her. I also wasn’t prepared to discuss them and she did nothing to pave the way into that conversation, so my head was spinning.

But she plowed forward, and I did nothing to stop her. Her next questions revolved around how I would feel when the doctor tells me that there are no more chemo options. What?

I explained that I try to take everything one step a time, and I assume that we will handle whatever comes up.

So she asked me again.

By now, I was feeling exhausted and small. Something about her way of being made me feel really beaten down. We eventually got around to discussing painkillers. I took the narcotic prescription she gave me and walked out.

I won’t fill the prescription, because I won’t be able to take those meds. First of all, I feel like there MUST be something between regular strength Tylenol and narcotics. But also, those pills will remind me of this conversation, which is not healing.

Thankfully, the meeting with my oncologist was more upbeat. Given that he was telling me that I had tumor growth and would be going back on chemo, that is saying something!

I hope your interactions are going well today. Thank you for always lifting me through your interactions. It truly keeps me going.

Love,
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

Anything is possible!

It’s been a week when I didn’t have to do chemo, and, physically, I felt relatively good. Emotionally, I felt slightly off-center, almost like I am a beat behind on everything. Things feel confusing much of the time. I become hesitant to speak and, when I do, I say the wrong thing.

In this space, I wonder why I am doing all this to keep going, and going where? Will things get better or is this what my life will forever be like in the best case? And if it will forever be like this, would I prefer that it is longer or shorter?

To consider that shorter is acceptable becomes a step down a slippery slope. Then, instead of looking at all the things I CAN do, I look at the things I can’t: I tire more easily; my brain doesn’t work so well; I can be more scattered than focused. Those thoughts impact how I feel, and the downward spiral continues.

Then, one day this week, I received messages from two friends. One shared that there were clearly spots on her mammogram, but when she went for her biopsy, no one could find the spots. The spots were there, on the study, and then they were gone. Wow.

Another friend was just “fired” by his oncologist, meaning that the cancer (stage 4 colorectal, which many would say is incurable) has been gone for so long that he doesn’t have to go back for checkups.

These stories remind me that anything is possible. These people aren’t distant strangers; they are friends. I am grateful to my friends for sharing their stories, and grateful to God and the universe that they were shared at the perfect time to get through to me. Thank you.

Please know in your core that, whatever you are aiming for, anything is possible!

Love,
Marie

Baby steps

Luckily, my chemo regime is typically relatively routine – infusion from Tuesday through Thursday, followed by a relatively predictable recovery through Sunday. Within that, each day contains its own familiar cycles, including the depression that starts around Wednesday afternoon. It’s dark and it’s irrational. I understand that this depression is part of the whole cycle, but that doesn’t make it easier.

Even though I historically emerged from each depressive event so far, that logic doesn’t help me to see the light at the end of the tunnel. In the midst of each chemo cycle, every single time, I feel like I won’t make it through to a better place. Each time, I think that maybe there is no light or even an end to this tunnel. Maybe this time, I entered a cave that only gets deeper and darker.

When I feel like I can’t do it anymore, usually Wednesday night, I text one of my cousins in some socially acceptable way of saying, “this sucks and I just want to die.” She, thankfully, responds in a variety of ways that says “hang in there.”

“This is the part where I just want to go to sleep and have someone wake me when chemo is over.”

“Ah I’m sure. Hang in there. You are the strongest person I know. It’s helping you…Luv u”

 

“Not horrible but could be better.”

“At least not horrible. That’s good…Think good thoughts.”

 

“Less than 24 hours. Counting down.”

“Been thinking about you all day. Hang in there.”

I cling desperately to my connection with her, as if it were a strong rope that links me to the real world and prevents me from spiraling further and further into deeper darkness.

I simultaneously want to close my eyes and not open them again AND jump right back to the place where where joy feels effortless. I can see others being happy. But during that time, a happy place feels far away and unreachable for me.

I’m starting to realize that I can’t just jump from here to there, and I can never predict what will pull me out. This time, it was a series of baby steps that combined serendipity with a bit of grace that allowed me to step into a slightly different emotional space.

First, I prayed for help, not sure that it would come but promising to watch for it. Shortly afterward, I received a text from a friend who is going through her own horrible time. She was scheduled to fly to Florida with her children but felt that she couldn’t do it.

Then I got this message:

“Florida warm sunny and lovely…xo”

She did it! Her strength gave me a little strength, showed me a little bit of light.

Next, I received a blog post from someone who had a hard year but decidedly focused on the good parts, and I felt a little more positive.

Experiencing each of these moments was like Jesus holding my hand and helping me to take a small step forward, showing me: “See, here is a little bit of good that can enter your heart.” Though I was not yet out of the darkness, I could believe that, if I held on and paid attention, I would be led somewhere that was safe.

We traveled to Pittsburgh for Christmas to see the rest of my family. I was still sick and in pain, but slowly feeling better. On Christmas Eve, during the day, I went to see a friend. Even though she was tired, I was thrilled to get to see her and I took on lots of good energy from her. Baby steps.

That night, feeling like I was slowly making my way out of this dark place but annoyed that it was taking so long, I got an abdominal obstruction that caused waves of pain on its own, plus pulled on the tumors to make them hurt too. I lay in our dark bedroom as my husband put the Santa gifts under the tree. I couldn’t participate in anything and I hated that my illness was ruining Christmas for everyone around me and myself. Plus, we planned to travel to the Bahamas the day after Christmas, and I knew we wouldn’t make the trip unless I felt better. I used the mind-body techniques I knew, and they helped, but progress was slow.

I needed to know that I wasn’t alone, that someone was with me. I prayed, “I need some light, something.”

Just then, the bedroom door, which had been closed but not clicked all the way, opened just a crack and a thin stream of light poured into the room and onto me. Even though I was still in pain, I started to feel a little more optimistic.

I laid awake until about 3:00 in the morning, working through the obstruction. I started to feel better and drifted to sleep when, at 3:30 Christmas morning, the light on the bedside table next to my side of the bed turned on. I kid you not. It was not a timer. It just turned on. It was a three-way light and thankfully turned to the dimmest setting. I had to laugh inside. I might still be recovering, but so many things are out of my control. I felt like it was a sign. And if a light could turn on by itself, then maybe anything really is possible.

Christmas day was lovely, and as I write this, we are on a flight to the Bahamas….

Landing on Long Island, Bahamas

Thank you for all the tiny things you do (and the bigger ones too). Each one makes a difference that changes a life, including mine.

Love and light,
Marie