CEA Stable

Exhale again! My CEA is stable! 

So, no chemo and I get a blood test in July and a CT scan in August.

More specifics, if you are interested.

Last CEA was 12.0

This CEA was 14.2

Though a five-year-old can tell you that 14 is bigger than 12, my doctor considers that change to be stable. I'll take it.

Also, the tumor in my lower abdomen that was causing bleeding shows up only on MRI and PET, but not on CT. We wouldn't normally do the MRI and PET anyway, so comparing CT to CT, my oncologist would say things are stable. 

And, a tumor in that specific area is not typically treated using chemo. 

So, all that convinced me that chemo would do more harm than good.

The first thing I did (I hope - it is a bit of a blur) was to give thanks to God. One of the next things I did was to sign up for sculling lessons. 

Two funky-fun happenings that I want to share with you:

- When I got my blood drawn, they typically leave a line connected to my port, so that they can hook it up to chemo a few hours later. I was futzing over what kind of tape they should use to cover the needle and the nurse said to me, "I don't need to leave this in here. You won't be getting chemo today. I can feel it." I just LOVE that kind of vibe. Especially when he was right.

- Also, he drew quite a few vials of blood, each to check my red count, white count, protein, etc. Every vial filled without a problem. but each time they drew blood for the CEA, the blood flow would stop halfway into the tube. He had to restart and draw the vial for my CEA three times. Another nurse stood watching it, too. They finally asked me to not breathe while he drew it, and it worked. I guess I was a bit hesitant to learn the number.

Thank you so much for being there. Really and truly. Enjoy this amazing day!

Love,

Marie

PET CT results and upcoming blood test

Thank you for celebrating my birthday with me! I love hearing about the things that are so awesome in your life, and I love that you recognize that your life is awesome, whether or not you decide to share the wonderful aspects. I hope you can keep going with the gratitudes awhile longer. Me, I'm having trouble with the intentional acts of kindness, but I suppose there is always something to work on. And many thanks to those of you who brought hostess gifts!

To celebrate my birthday weekend, Tiron, the boys and I traveled to Kripalu, a yoga-retreat center in Western MA. The boys participated in a weekend-long Tribal Jam workshop (drumming, dancing, etc.) while Tiron and I got some R&R and spa treatments. During the breaks in the workshop, we spent time together walking the grounds, swimming in the lake, eating the amazing food, and playing games. We had a great time, individually and together, making a beautiful and memorable birthday for me.

I also learned that my 50th birthday was on Pentecost Sunday. How incredibly cool is that? AND my husband's cousin had a baby girl that day, too. So many good happenings converging!

When we returned, I got the results of my PET CT. Please know that I appreciate your patience in sitting with me while I waited for these. I couldn't write about them because they were confusing and difficult to process. Here is the scoop:

Three doctors read the study and shared their three different points of view:
- Stable 
- Slight growth in one of the nodes but basically stable
- New "activity" but liver node is inactive and does not appear to be cancerous. GREAT NEWS.

After a bit of fretting, I finally decided that I choose "stable" combined with "liver node does not appear to be cancerous."

I especially love the "liver node does not appear to be cancerous" part, because all my outside work - prayers, meditation, energy healing, Tong Ren, etc. - has been focused on that liver node. The night before I got my results, I prayed for some sign that healing is indeed possible, and I feel encouragement in that statement. I'm in awe of the work and power of God, and in awe of your role in that, too. You really do carry me through this - I can't say that enough - and your prayers help enormously in my healing.

On Tuesday (June 12), I return to Dana Farber for a blood test to check my tumor marker (CEA for those of you familiar). My tumor marker generally provides a good indicator of what is going on inside my body. Despite the recent apparent sign from God that healing is possible, I am uncharacteristically nervous about learning my CEA number. I don't want to leave my little land of "stable." 

Life continues outside the medical arena. My six-week, learn-to-row class ended and everyone scattered for the summer. I wanted to keep rowing, so a kind friend arranged an instructor for me and a friend so we could go sculling. Sculling means, out in a boat by myself. 

I am not naturally drawn to the water. I learned to swim when I was 35, and water still evokes fear in my heart.. Rowing with friends provided safety in numbers. Going in a boat by myself made me both excited and nervous. 

The morning started out cloudy with rain off and on. In rowing culture, rain is not a reason to cancel, so I pretended to be hardy, grabbed rain gear and made my way to the boathouse. There, I connected with my friend and our new instructor, Brenda, a lovely, patient woman my age with a sense of humor. 

We walked to the boats, which were stored upside-down on a rack. Brenda gave a few instructions, then told us which boats to remove from the rack and carry to the dock. The boats looked heavy, awkward, and, if dropped, both expensive and embarrassing. My weakling arms shuddered. My pretense of being hardy evaporated. But I took a deep breath and knew I would give it a try because, if I wanted to row, I didn't have a choice.

Just then, Brenda glanced down at the dock and said, "Look, someone is coming in. Go down there and ask to use their boat."

Big exhale. Fortunately, TWO people were coming in so my friend and I didn't have to have that polite conversation of, "No, you take this boat and I'll get another." when really, I'm sure that neither of us wanted to carry it.

Once we took ownership of the boats, Brenda showed us how to get ourselves into them, and how to use the oars in sync. I stared at the boat thinking, "This is it. I will rock over and fall into the water."

As if she read my mind, Brenda said, "The water here is only four feet deep. Even if you fall in, you will be fine."

Again, big exhale.

Climbing in and strapping my feet into the boat, I thought, what if the boat tips? Again, Brenda responded to my unspoken question. "Put one oar into the water and lift the other into the air."

I hesitatingly did as instructed. I felt the boat rock sideways, but my body was in no danger of falling into the water. I could even lean into that direction and be fine.

"Now switch. Put the other oar into the air."

Still a bit scared, I did as she asked, and again, I didn't fall in. Hmmm. Maybe this boat is more stable than it looks.

Though a bit more confident, a piece of me remained unconvinced. Should the boat tip over, despite all odds, how do I unstrap my feet and get out? 

Brenda was done reading my mind and told me to push off and get rowing.

I mentally reviewed: The water is shallow. The boat is fairly stable. Yes, I could potentially fall in, but that is not an immediate worry. And if I did fall in, I could hopefully figure out the strapped-in feet. 

Again I exhaled, then took a deep breath and pushed off from the dock.

I row slowly, which coincidentally provides time to actually enjoy each stoke and my surroundings. The calm water under cloudy skies felt lovely and relaxing. No rain. I was happy to focus on keeping my strokes precise and steady and could think of nothing else. I did steer into some trees along the side of the river and got stuck in them. It took a moment, then I calmed down and figured my way out of the tangle. 

All too soon, the lesson was over and my worries started again. How on earth will we lift these boats out of the water and carry them to the boathouse? I pushed the thought out of my mind and focused on just rowing the boat to the dock in the first place.  Once there, I climbed safely out of the boat and suddenly, someone appeared and asked if they could use our boats. Problem solved! 

So, maybe I can swing that again, this time, with the blood test - hoping that, while things may feel wobbly, they are actually pretty stable. Perhaps all these worries will not actually come to pass, but will be handled in wonderful and unforeseen ways. 

Much love to you and more blessings than you can count,
Marie

Time to Celebrate!

Thank you for all your prayers and good wishes. I had my PET CT on Monday, and I will wait until next Tuesday for the results.

Right now, though, it is time for a celebration.

My 50th birthday is this Sunday, May 27, and that is as good a reason as any to celebrate. I would love to celebrate with you. 

Since we can't all be in the same place, I have an idea for celebrating together.

You can join the party by doing one or both of these:

- When you wake up, consciously notice and express gratitude for something in your life. It can feel complicated or simple. It can feel small or big. You just need to notice and be grateful. If you can say it out loud, all the better!

- Do something kind for someone (you or someone else), with joy in your heart.

The party will start on May 27 and continue for 50 days (July 16 by my calculations). This means, do one or both of these things every day. 

Of course, you can leave, and rejoin, at any time.

It might be fun if you want to post the things you are grateful for here, though I have no idea how complicated it is to do so. 

http://adventures-in-colon-cancer.blogspot.com/

Or just email to me and I will post them anonymously. Sending one-word, like, sunshine or dessert, is totally cool and perfect and may inspire others.

BUT WAIT - there is more! If you are the kind of person who likes to bring a party gift, I've thought about what that could be.

Every single day, I feel so lucky to reach the age that I am. Countless people would give anything to celebrate this milestone birthday, especially children who are diagnosed with cancer. I also think it is really important to help support each other when and where we can. You have taught me that - I couldn't have come this far without your support. 

Combining these two sentiments, please consider a gift to the Back To School program at Dana Farber. 

This program hit home for me because I know how hard it is for me, as an adult, to re-enter normal life after even brief treatments. I know how my children experience stress when they return to school after I had treatments, and the disconnect  they experience between their reality and the reality of their friends. 

There is certainly an adjustment period when a child re-enter normal life after being treated for cancer. Teachers, children and other families are not equipped to provide this kind of support to the child or family. But the Back To School program helps with this. You can read more about the program here.

http://www.dana-farber.org/Pediatric-Care/Treatment-and-Support/Patient-and-Family-Support/Back-to-School-Program.aspx

So, if you would normally bring a gift to a party, consider directing your gift this way and send a check, made out to DFCI (or Dana-Farber Cancer Institute) to 

Colleen Gleason-Epple

Dana-Farber Cancer Institute

10 Brookline Place West, 6th Floor

Brookline, MA 02445-7226

The memo should say Back to School Program.

Of course, there is never any obligation for a gift. I just hope you have fun with it. 

So, that is it! I look forward to your joining the party. 

Much love to you, and joy always.

Marie

More tests

It feels wonderful to be off chemo, especially to have all this extra energy and extra time. Thank you for all your prayers and positive thoughts that got me to this point. They continue to help me stay calm, grounded and connected, which makes a significant impact on my daily life. 

It also feels wonderful to have no doctor visits! But, the past two weeks broke that little streak. I started bleeding where I shouldn't be - not that anyone should be bleeding anywhere. I went off to the gynecologist for an exam and biopsy. The biopsy came back showing colorectal cancer, so I contacted my oncologist and my surgeon. 

One thing about a cancer diagnosis - doctors, thankfully, move quickly. 

My oncologist called to say something like, "You really don't want to have surgery for this. You will end up with a colostomy bag." His tone made it sound like it was the worst thing in the world. When I reminded him that I already have a colostomy bag, we both got a good laugh.

My surgeon got back to me within minutes. She arranged a pelvic MRI, and two days later, we discussed the results. The test shows a tumor in my pelvis and a tunnel that goes from one part of my pelvis to another. 

Hmmm. What to do?

None of us are sure. There is always chemo. Surgery is a possibility, but it isn't pretty. There is a good possibility that this has been there all along and is simply acting up.

My last PET CT, almost a year ago, showed some "activity" in this area, so I will have another PET CT on Monday to see if there are any changes. I get the results of that scan after Memorial Day.

In the meantime, I feel pretty good in every way and am doing what I can to stay healthy. My transition to macrobiotics is coming along and I'm learning a lot. I love to cook, so food provides easy and fun experimentation.

When we built our home, I didn't care about square footage, electronics or sound system. However, I did care about the kitchen. I wanted an open, inviting kitchen with high-end appliances and was lucky enough to get a top-of-the-line, mammoth range that includes six gas burners and a huge oven. Bliss.

For about a year or two, I cooked like crazy. And then one day, I decided to go raw.

A raw food diet sounds simple but making interesting foods requires new equipment, including a dehydrator, a strong blender, and a couple of juicers. Of course, I wanted the top-of-the-line of each of these. Because raw is what it sounds like - no cooking - Tiron wondered if our massive stove would stand like an art object in the kitchen. I continued to use it to make meals for Tiron and the boys, but with nowhere near the complexity or frequency of the past.

The raw diet served me well for a few years and I made good use of all my new appliances. Then suddenly, I couldn't digest raw foods so became interested in a macrobiotic diet and lifestyle.

Immersing myself in this, I discovered that my kitchen life would not be complete without a pressure cooker. Top-of-the-line, of course. 

Tiron wondered out loud how millions of people in the world cook perfectly fine rice and beans without a pressure cooker. I assumed that was a rhetorical question and not an objection.

Before I got around to researching and ordering the pressure cooker, our family hamster arrived. She arrived on a Sunday, and when the boys suggested naming her "Lucky," I thought, "She will be lucky to make it through the week."

That Tuesday, a mere two days later, Lucky was in her ball, rolling around our floor. We weren't playing close attention and then….we noticed the ball was open and empty. No Lucky. Panic ensued. Namely, my panic. And irritation. I didn't really want a hamster, and I certainly didn't want a hamster loose in our house. Deep breath. Stay calm.

Because the ball was near that lovely massive kitchen range, we looked, and found her, underneath. J-man and I waited quietly until she finally peeked out. J-man pounced on her, but Lucky was faster and retreated to her new home.

We placed food and water on the floor in front of the range, both to lure her out and to help her stay alive. Now, when I did cook on the stovetop, I had to stand about a foot away to accommodate the food and water setup on the floor. Though I rarely bake, now that I couldn't use the oven (for fear of baking the little thing underneath), baking was all I wanted to do. We set up a contraption to try to catch her in the night, which took up even more floorspace. Our traffic patterns in the kitchen revolved around these items.

The most surprising event was finding Tiron sitting quietly in the dark for about 45 minutes, waiting for her to come out.

The first night, I arrived home to his excitement. "I caught the hamster!" he said. Ever the techie, he added, "On video!" I tried to raise my excitement level to match his.

I began to view our stove as the most expensive hamster cage ever. Lucky had it pretty well - water, food and freedom from overly-enthusiastic little boy hugs. But on the second night, Tiron actually did catch her. Physically.

We are all back in our respective places: The hamster running in her cage, the dog sleeping wherever he wants, the boys playing outside (now over the novelty of their new pet), Tiron working in his office instead of waiting in the dark, and me, in the kitchen awaiting the arrival of my pressure cooker as I figure out these new recipes.

I hope that you are also exactly where you are meant to be.

Many blessings and love,
Marie

Tumor marker stable

I am happy to share the news that my recent blood test showed my tumor marker at 12.0, which is considered to be stable from last month's 11.6. While I would prefer, for example, "stable at 11.0," I am so grateful to God and to all of you who continue to carry me, my health and my family in your prayers and positive thoughts. My next test is a CT scan near the end of May. Keep on praying. Prayer is so good and immensely helpful. Positive thoughts are fabulous and lift everyone they touch.

After a few weeks off chemo, I realize that I feel a bit ungrounded without my strict chemo schedule. Possibly, I miss the structure it adds to my life, or the feeling that I am doing something really hard and therefore, everything possible. I'll get over that. I am more disoriented by feeling less connected to God and the spiritual side of my life. It was as though I walked into an amazing room, and now I don't see it. The change surprised me and I cannot figure out how to step into that space again.

In the meantime, life continues to move along. I have the chance to incorporate activities that have been on my to-do list: start a macrobiotic diet, enrich my meditation and gratitude practice, write more, and learn to row. Somehow, "watching Downton Abbey" snuck into my days and I became addicted to the show. Unplanned, but fun.

Also unplanned: We got a hamster. When our first son turned three, the second was born. When the second turned three, we got a dog. When I noticed this pattern and realized that we will soon have the dog for three years, I knew that we needed to add another member to our household. 

Tiron or any state agency would not be supportive of adding a child to our family. A second dog is out of the question for now.  Then I saw that a friend needed to find a home for their hamster. I surprised myself by jumping on it faster than a good buy on RueLaLa. I felt that same excitement combined with the same anxiety that someone might claim it before I do. I immediately emailed my friend expressing our interest. Later that night, I casually ran it by Tiron. He wasn't enthusiastic but didn't vehemently object. I think his words were, "That isn't what I was expecting." Or maybe, "I can think of worse things." Regardless, my mind translated his words into, "Sure. Whatever you want."

The boys excitedly discussed names for the hamster. The dog had no idea that his perch on the pedestal of "only pet" is about to go away. The babysitter, I think and hope, added the care and feeding to her list of things to do. Tiron appears to be relieved that it doesn't need a daily walk. And I'm happily stepping outside my comfort zone by letting a rodent-like creature live in this house. Add that to my list of things I never thought I would do.

That is the kind of surprise that I welcome.

Still feeling unmoored, I went to Mass and prayed to get some insight into how on earth to reconnect. Then the priest opened the Mass by saying that the readings today focus on maintaining our connection to God. Exactly what I needed! Once again, if I calm down, stay patient and provide even a sliver of opening, the light can shine in. I'm not yet seeing that beautiful room, but at least I feel like it is possible.

I hope that you are finding space in your life for the activities on your love-to-do list, and that you also have some openings for happy surprises. I hope that everywhere you look, you feel the blessing of the connections in your life. I do feel so blessed to be connected to you.

With love and gratitude,
Marie

Love and light and no chemo

Thank you for your responses to my last message. Whether your response celebrated my chemo holiday or questioned whether I was being aggressive enough, I appreciated your thoughts and concern. Each one helped me to sort through my emotions as your statements echoed all the different aspects of what I was feeling. Thank you.

These past two weeks have been amazing in ways that I couldn't have predicted. Sure, there was April Fools' Day - great fun! - and Passover and Holy Week and Easter and all their marvel. 

And I started a learn-to-row class! Living just a few steps from the Charles River, this always seemed like something I should do but could never pull it together. For starters, I don't consider myself to be that athletic. Any new sport I learn has to have a social component to draw me in. Taking a class by myself is not my style.

Then one of the moms at my sons' school arranged a learn-to-row class, inviting other moms from the school. So, a sport I want to learn with a group I mostly know. Only hitch was that the class meets every week, but with no chemo, I can do it! We started this week and it was a blast.

But the biggest thing that happened during these past two weeks was a shift inside that moved me to another path, and I am going to invite you to join me on this path, if you are able and interested.

To take a step back: I had been having this fabulous experience of everything just clicking in my life. When I asked a question, it was mysteriously answered. When I thought of someone, they were also thinking of me. When I wanted to do something, the opportunity appeared. It was all so wonderfully FUN. 

Then, my oncologist strongly recommended that I take a break from chemo, and I got scared. Quitting chemo felt like I wasn't doing everything possible for my health. In addition, chemo had become my crutch, and I was afraid to go without it. Fear can easily send me spinning in circles and blind me so that I don't see all my options. I was stuck in indecision and couldn't tell what I wanted, needed or felt right. 

I did know that I did not want to make a decision based solely on fear. I wanted to make a decision based on joy and hope and other good and positive feelings, but I couldn't find my way out of the fear.

The day after the conversation with my oncologist, I was still in this fearful place and NOTHING was clicking in my life. For example, I would search the web for specific information but couldn't find it at all. I would email someone and they would respond that they preferred that I call them - and not leave a number. It took Herculean effort respond to emails. Anything I tried hit a dead end and I felt very out-of-sync with my life and with the universe. On top of being fearful, I was now frustrated. 

"Be still and know that I am God."
Psalm 46:10

Easier said than done. I promised myself two weeks to make a decision and I felt the urgency of racing against a deadline. But I read and re-read and re-read this Psalm, which took root in my little exhausted heart. After a few deep breaths, I decided to hand it all over to God and be still inside, or, as still as I get.

Slowly, things shifted. For example:
- My friend, Kerry, suddenly and joyfully shared a series of synchronicities in her life, impacting mine in a positive way.  Even if I wasn't feeling the love right now, this let me know it was available. 
- I was told something directly by a few people I trust, including the father of a friend and a healer with whom I work, both of whom have walked this path before. They all shared that, if I am afraid of going off chemo, then by all means, go back on chemo, but there is something bigger to work on here. That resonated deep within me.

There were a number of other fantastical experiences, culminating in an amazing, awe-inspiring day where so many things came together that my head was spinning. The happenings of that day, taken together, were so big, in so many ways, that I have trouble writing about it. I just can't seem to capture it in words. I will try to give an overview and summarize its impact on me.

I intellectually and emotionally care about healing, and I know there is more that I can contribute and enjoy in this life. At the same time, I feel like I am drawn, or maybe even being sucked, down this other path that I cannot describe. It feels light and hopeful and open in a very expansive way. It feels grounded and beautiful and very connected to others and to God. Taking this path has become my immediate priority.

It is as if I peeked into this amazing world and can't help walking in further.

I don't know exactly what this path is, or where it will lead me.  I don't expect it to be easy, and I suspect there will be work to do. I do know that I need to go there. I can literally feel and sometimes see lots of light. Step by step, my decisions are different, my actions are different, and I feel like I am being led. Maybe you know this feeling already? I also know, as strongly as I know anything, that I cannot simultaneously take this path and do chemotherapy right now. 

So, I am indeed going to take the recommended break from chemotherapy. 

If this sounds insane to you, or unreal, I totally understand. But if you are interested, I would LOVE to have you along. Not only do I prefer to do things with friends, I also have a strong sense that, if you join, in any capacity, you will get something from this as well. 

Again, I don't know where this leads or what it involves. I will be feeling my way and trying to listen carefully to the messages and strong feelings that are coming my way. But I wanted to bring you up-to-date on the movement that happened since I last wrote. 

As you know, your prayers and positive thoughts have had a powerful impact on this journey and my life. My quality of life and my overall health is even better than it was four years ago when I was first diagnosed. I have experienced miracles in my life and witnessed miracles in others, in large part due to you and what we do together as a group. I appreciate all of what you do. Whether it feels big or small to you, taken together, it feels tremendous to me.

If you don't mind, please give thanks for that collective power and strength, and pray for a healthy body for me! Then live your life fully and with joy. I give thanks always for you. 

Have a fantastic weekend.

Love and blessings, 
Marie

Stable CT so on a chemo holiday

Thanks for waiting with me. The bottom line is: I'm on a chemo holiday and my next CT scan is at the end of May.

More details:
My CEA is 11.6, down only a smidge from two weeks ago, at 11.7, but still, down, so I'll take it.
The "activity" (love these code words) in my lymph system is barely noticeable on the CT scan, so that is great positive news.
The two tumors are stable at exactly the same size as two months ago.
And there are no new tumors. Big yay for that.

My plan (HA! I should know better by now) was to do chemo until the end of May. At that time, in my mind, my CEA would be in the normal range and the tumors would be gone. Or, I would just need a break.


The doctor's recommendation is that I take a chemo holiday now because things are stable now and who knows what the future holds. Okay, that sounded ominous so I didn't want to go there if we were just speculating. 

I have to say, I was conflicted. I was geared up for more chemo, for quite awhile. At the same time, when someone says you don't need to vomit and feel sick for the next few days, it is hard to pass up that offer.

A few years ago, I had surgery to remove a very small tumor, and there was no other sign of disease in my pelvis. The surgeon thought I should follow up with chemo, and she put the case before the board of doctors (or whatever they are called). She told me that not a single doctor agreed with her, but she felt strongly that I should do chemo as a follow up.

At that time, also, I couldn't resist walking away from chemo. And three months later, I had a 10 cm tumor on my ovary, followed by a huge surgery. I can't help but reflect on that.

So, my inner conflict continues. I am going to sit with this for two weeks and see how I feel then. 

For now, I do feel like someone just gifted me four whole weeks, because there are four weeks where I would normally be doing chemo where now I will not.

Deep breath. And thanks. For your prayers, your support, your helping me to feel not so alone,the meals and all the healing vibes you send this way.

I send my love to you and wish God's blessings on you today and every single day.
Marie