No chemo on Monday!

I would normally have chemo tomorrow (Monday, December 5) but my schedule shifted again and I will instead have chemo next Tuesday, December 13. If you were keeping track and about to send prayers and positive energy, thank you. Last time around, your prayers and thoughts made for a much smoother chemo week - thank you for that. I was able to get out of bed and although I still felt quite nauseous, I could function. And then, it just got better from there! So thank you for your very positive impact on my life.

As a group, my daily life changes because of the positive energy from you. When I started down this path, I had large reserves of my own energy and hope, larger than I knew at the time When something happened, I unconsciously dipped into my reserves to bring myself up. But since September, it seems that my reserves are slim and sometimes none. 

Without these reserves, two new supports shone through. One is the power of God. I realize I am carried by this on a daily basis, but sometimes my awareness is stronger than others.

The other is the power of a group of people who are praying and sending good energy my way. The difference you make is tangible.

I know you can feel varying energies with friends and colleagues. Being around some people can pull you up, and being around others, however much you love them, can pull you down. Being in some environments is life-giving, while other environments suck the lifeblood right out of you.

I started to notice this more and more when going in for chemo. For whatever reason, I got depressed even walking into MGH lately. There was no one specific reason; it is more of an intangible feeling. My oncologist is caring, very smart, and knew my history. Though my rock-star chemo nurse switched working days, the others nurses were there for me, and the institution itself is top-notch. But when I entered the building, my entire body sank.

Still, it took about a year before I had the energy to change the situation. It is much easier for me to stay stuck in the way things always have been, especially when I can rationalize why I am staying. I know, though, when I start to do that, it is indeed time to make a change.

Fortunately, we live in an area with several great options, and, last week, I rallied and got to meet with an oncologist at Dana Farber. From the start, things felt better. When my friend and I drove into the parking garage, we planned to self-park but accidentally drove into the valet line. No problem - the valet moved the cars so we could drive through, with a pleasant tone of voice and without eye-rolling or eyebrow-raising. We entered the new building, where people cheerfully directed us to the right floor. And when I asked for a bottle of water (not noticing the sign in front of me that said "Refreshments"), a gentleman got one for me with good cheer and no sarcasm. The patient sitting next to me asked if they had Scotch, too. 

The oncologist was easy to talk with, knowledgable and direct. He shared his positive energy and gave all the time I needed. I left the building feeling pretty upbeat. Of course, I didn't actually have chemo that day, but that's a detail.

I am fortunate that all my doctors, at MGH, Dana Farber and Beth Israel, know each other well and work seamlessly together. Even if I am not working routinely with the doctors at MGH, it helps my emotional transition to continue to consider them as part of my team. 

To remain on schedule, I should have chemo this week. But, the boys have two weeks of vacation at Christmastime, and I'd love to spend it with them if I could. The oncologist was comfortable jiggering my chemo schedule for December to make that happen. So, rather than chemo ever other week, the next two sessions will be at every three weeks, and then, in January, I start every other week again. I know this sounds convoluted; don't feel like you need to follow it. 

The plan is to keep doing chemo and see what happens before determining a next step. This is more uncertainty than I would choose to live with, but I guess I don't get to choose. So, I'm along for the ride.

If you don't mind, I'll send out a reminder for prayers, etc. before December 13.

In the meantime, please know how incredibly grateful I am to have your support. You are a huge part of my healing team, even if I don't see you very often. It feels a bit like I have fallen backwards without knowing whether I would be caught, then felt a zillion hands catching me. Thank you. And I send out all my positive energy your way.

Much love and light,

Marie

Shift the Energy

Thank you for being there. Thank you for being there in so many ways: for support, for listening, for laughing, for sharing. Thank you for allowing me to share in your life, and I feel so fortunate that, especially in these past few months, I've been able to do that more actively.

I am thrilled to share the news that my CEA level is holding steady. The CEA is a marker in my blood that can often indicate the presence of a tumor growing.

Below 2.5 is considered to be normal. My numbers, every month since January have been
1.6
1.8
2.0
2.2

Notice a pattern? Data-oriented me was pretty worried about the one for May, but it was flat at 2.2, and for that, I am immensely grateful. My next test is a PET CT at the end of June -- all prayers and positive thoughts are welcome!

I feel so fortunate to be off chemo since mid-January. My energy and stamina are returning, along with my hair and weight, and the stress level in our household is noticeably reduced. This all makes it easier to look outside myself, and I now see so many people with cancer who can use help and prayers. Some are older, most are my age, quite a few are younger than I am. I hope I am a fraction of the help, support and presence that you have been to me. I know that this is big part of my good standing these days. Regardless of your beliefs, I feel like the divine is working through you, and that you are blessing me with your grace.

I heard an inspiring story last night. Friends of ours had a home destroyed by water. It is a relatively new home, and needs to be totally gutted and rebuilt. I can't imagine the stress that goes along with this. However, like many resilient people, they put a positive spin on it: No one was hurt. It isn't our primary residence. 

That alone was impressive, but then these folks went one step further: They took the negative energy from that episode and swung it around to the positive by making a donation to flood victims. While they were experiencing the pain of extensive water damage, they realized that they were still in a position to help others, and then did so. I stand in awe.

You all have done the same: While you each have your own life stresses going one, you have been so incredibly generous with me, with your time and prayers and support. I am continually touched by this, and I hope that I can shift the energy in a positive way to others and back to you.

Much love and gratitude,
Marie 

P.S. For those of you interested in "cancer experience" stories:

I entered the elevator at MGH to get to the seventh floor for my blood test. Over the past year, I developed a phobia of touching these particular hospital elevator buttons. 

Like many people with phobias, I have my own coping strategy. I enter the elevator then wait to see if anyone else pushes the button to my floor so that I don't have to. Luckily, a blonde woman standing by the buttons pressed 7; I breathed a small sigh of relief. 

Just before the doors closed, an older couple entered the elevator. Both were tall and thin and the woman seemed to be in slightly better cheer than the man. She looked at the display of buttons and said to her husband, "Oh, seven has already been pressed." 

At that moment, my brain-mouth filter didn't work and I blurted out, "Popular floor."

The couple and the blonde woman looked at me like someone who didn't fit into the club. I felt a mix of things: grateful that I no longer looked like a patient, desire to prove that I am part of the group (what was up with THAT?), and a small bit of embarrassment at simply saying something that may have made someone else uncomfortable. I willed my mouth to stay closed.

The blonde woman by the buttons turned to the tall, thin man and said, "I recognize you. You and my husband got chemo together. You look like you put on weight."

Only in chemo-world can that be considered a compliment.

He and his wife shared a puzzled look. Clearly neither of them remembered her, so he just said, "How is your husband doing?"

"Well," she said. 

Where was this husband? I wondered. And why on earth would you ever bounce around here alone? 

I looked at the three of them. It seemed like the tall, thin man was still in treatment, that the husband of the blonde woman was in the clear, and I was somewhere in between. I very much didn't and don't want to be back on chemo. Despite the cheerful banter of the couple, I could feel the stress and worry. I also realized that, at any moment in time, I could be in any of their shoes, and they in mine. So much of life is out of our control. I was again grateful for where I was.

"Is this your daughter?" the blonde woman asked him. His companion in no way looked like she could be his daughter. But then again, cancer ages all of us.

"My wife," he said curtly.

The doors finally opened to the seventh floor and we all marched toward the doctors' offices and down our own, unique paths.

__._,_.___

Some ups, some downs, and the power of words

Chemo tomorrow (Tuesday). The ball gets rolling at 7 am.

It's been a great two weeks in so many ways: parties to celebrate graduations, reunions, life (literally went to a Celebration of Life party), and the fact that we can dance with our 3 year old. We had a quick but fantastic trip to NYC with the boys, visits with friends....I feel so lucky to be well enough to enjoy all that.

My last chemo went smoothly. Typically, I have chemo on Tuesday, wear my continuous infusion pump on Wed and have it removed on Thursday. Also on Wed and Thursday, I take anti-nausea medications. But on Thursday, I felt so well that I forgot to take them. Woo hoo!

Never fear, though -- life is not without its checks and balances, and I got sick the next week (my non-chemo week), with the same thing that sent me to the ER two weeks prior. Late Monday night, I could feel it coming on, and the stomach pains kept me from moving around. I stayed up all night, trying to keep everything down. I hate getting sick, and I'm a wimp with pain. I also knew that, if my husband caught wind of this, he would insist that I go to the ER, and I preferred to stay home.

At 5:30 a.m., the gig was up. And, my husband heard me.

He was out of bed like a shot, showered and dressed before I was done. He appeared like Superman on the scene, standing over me with his hands on his hips. Since I was alternating between praying to the porcelain gods and being doubled over on the nice, cool, clean bathroom floor, I really wasn't in the best position to argue. Of course, that didn't stop me.

"They will just do tests and observe. It is way easier to be sick at home. I'm not going. And you can observe me here."

"I AM observing you. You need to go to the ER."

I could not imagine laying on the bathroom floor of the ER. I had to stay home. I was convinced that this would run its course. At the same time, the voices from the ER docs, two weeks ago, echoed in my head. "You could have a bowel perforation and die."

I made my choice to stay home, but these words running through my head scared the crap out of me. (Pardon the rectal cancer joke.)

Thankfully, my discomfort ran its course, I avoided the ER, and got to recuperate at home. I felt more relieved than right. And more than a little lucky.

The rest of the week provided lots of opportunities to reflect on the power of words. Mostly, I live in a small circle. When I leave my house, I primarily interact with friends, or friendly people who are affiliated with my sons' schools, or neighbors. When I venture into Harvard Square, I encounter the earthy-crunchy people of Cambridge, who typically like to live and let live. It's all peace, love and rock and roll, most of the time. I admit that I prefer to surround myself with people who I generally like, and, while I think I am open to anyone, I have few random encounters with people much different than my social circle.

Feeling strong one blue-sky day, I went grocery shopping for the first time since January. My parents had a small grocery store when I was growing up and we all worked there. I LOVE shopping for food, and I chose a grocery store outside Cambridge. Walking among all the fresh fruits and vegetables, checking out the olives and cheeses, and smelling the prepared dishes was a completely sensual experience for me.

I was already overjoyed, and it got better: Leaving the store, I ran into two separate friends in the parking lot. So fun!

Then, for about a second, I blocked a woman driving her car. She was clearly angry about it, and I really didn't mean to annoy her, so I apologized. In reply, she screamed, "Would you shut up?" Wow. Suddenly, I marveled that this wonderful shopping and social experience, even the sunny blue sky, could be totally wrecked by one person's strong words. While it still stung, it was, luckily, so out of proportion to the situation that it was hard to take it too personally.

I thought about this for a long time over the next few days and looked at it from lots of angles. Harsh words and feelings transfer strong negative energy, and good words and feelings transfer positive energy. But why do the bad ones have such staying power? Why can they crush the good feelings? I don't know. Maybe the good ones are more fragile, or maybe, when those good feelings come our way, we have a responsibility to protect them and keep them alive and going.

Once I returned my focus to the many good parts of that day, her words started to lose their sting.

On top of the words, I realized that I carry around alot of assumptions I didn't even know I had, like...
...if I am nice, people will be nice to me.
...if I take care of my body, I won't get sick.
...tomorrow will mostly be the same as today.

Well, apparently, I'm not really entering into valid agreements with the universe!

But I'm happy to enter into agreements with you. I admit, you are part of my circle of choice, so it isn't a huge risk. But here is one: I promise to take care and nurture all those good feelings and prayers you send my way, so that any little good thought, prayer or wish has the potential to grow, and I will send those feelings right back to you. They truly carry me along, and I appreciate any you send for good chemo this week!

One short, completely unrelated story:

This morning, the boys asked if they could catch a rabbit in our backyard. I figured that was harmless and said yes. To my astonishment, they returned about five minutes later with joyful expressions and a baby rabbit.

When I asked why they took the baby rabbit, my six-year-old replied, "Because I can't catch the bigger ones."

I love that he knew his limitations and was undaunted by them, figuring out a way to go after what he wanted. I love seeing the happy eyes of both boys, filled with the hope that they would get to keep the rabbit. (They did not - we returned it to its mama.) And I love that both boys worked together to do this, even though it completely freaked me out to see that baby rabbit in my house.

I hope you find a way to catch whatever makes you happy, and that you get to keep it, too.

Love, Marie

P.S. I need to mention that a friend, Andrew, passed away last week from colon cancer. Three of us were diagnosed with colorectal cancer around the same time, though we've each had our own journey. He was younger than I am, and has three small children, around the same ages as mine. It is sobering to think of the ripple effects of this disease.