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

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

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

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.

__._,_.___

Continued Chemo Vacation!

My chemo vacation is extended! My PET CT came back clear and my CEA rose a tiny bit but remains in the normal range. This is the best news I could hope for. (Okay, I would hope for a stable CEA level but still, I'll take it.) 

I am grateful and humbled and exhaling again.

This time, the test itself went fine with no trauma, thanks to the happy surprise of having Jubilent Julie, my fave nurse, access my port prior to the test.

Two days after the test, the drive to the doctor's office to hear the results felt a bit like going before a parole board: Would I be granted freedom? I felt physically well, but I know from experience that that is no indication of what is really going on inside my body. 
When I got the news: happy happy joy joy -- I get another four weeks with no chemo, then a blood test. Assuming that is normal, another blood test the next month. Then, a PET CT three months from now.

Thank you for all your support in so many ways. Your friendship, your prayers, carrying the torch of hope when I couldn't, your forgiveness of my social lapses, your support of my wacky diet....it truly runs the gamut but is all so helpful to me and to my family.

It is hard to know exactly what is working. I continue my raw vegan diet. I'm doing herbs and tinctures, energy medicine, healing Masses, meditation, prayer, yoga, acupuncture, therapy....I'm sure there is more. I try to spend time with friends who are upbeat and have good energy. This is the best but also hardest to do, given all our busy lifestyles.

With the kids, we are feeling our way as we go, often reminded that our support systems are not necessarily theirs. For example, when we started down this path and A-man was four years old, he prayed regularly, sincerely and with an open heart for my recovery. When I had to go back on chemo last year, he decided that he didn't want to pray to a God who he felt wasn't listening. That led to lots of good discussions about God and Jesus, hopefully helping him to form his own beliefs. Recently, he told me that he is praying to Zeus and wants to go to a Greek church. I don't think those are connected, but, Greek friends: anyone want to take him there?

Last week, picking up A-man from school, he handed me a small piece of wood. On top of this wood balanced a large pile of sawdust. Obviously, he intended to carry this potential mess home. Even worse, he intended for me to carry this potential mess home. He was thrilled with his find so I swallowed my reservations and gingerly accepted the wood / sawdust combo.  As we walked, he chattered away in his typically happy mood, then suddenly informed me that I was carrying magical dust. He encouraged me to take a pinch (of the sawdust) and blow it away while making a wish. And, oh, if I didn't mind wishing for what he wanted, please wish that I get well. So I guess that, in addition to prayers, we have pixie dust.

Besides their coping mechanisms, we are noticing that each of us takes our time time to acclimate to the news that comes with each new report. Tiron and I will hear any news and let it settle for a bit, getting used to it. Sometimes, not always, we'll share the news with the boys. This time, when I told them about the good scan, their response was, "You had a good scan before. That doesn't mean anything." It didn't dampen my enthusiasm, but did show me that they need more definitive, day-to-day proof of wellness in their world. We would all like that, I guess.

So, whether you are sharing prayers or pixie dust, or something else, thank you for continuing it with us.  We all really rely on the sincere connection between us, and for that, too, I am grateful.

Love and blessings to you,
Marie

Good CEA number again -- whew

Thank you for being there -- just wanted to share that I got my CEA number tested last time and it came back at 1.8. Below 2.5 is considered in the normal range, so I am both relieved and a little scared. Scared because I worry that it can only get worse, but I try not to focus on that.

It can be hard to stay positive, because though I feel great, the doctor arrives listing all the ailments that i could possibly have, asking if I felt any of them. I hate that it plants all that in my head.

However, the other big fun news is that Julie, my rock star nurse, is back from maternity leave! So, all is right with the world.

I'm sitting here in the infusion room, with the needle in my chest and the tubes hanging out, and just feeling so lucky that you are out in the world, doing your thing, maybe singing to some great music as you sit in traffic, chatting with folks you are happy to bump into, moving some project forward. I'm psyched to be doing all those things in just a few days, and it is great to know that it is all happening already.

Sending tons of love and gratitude your way, and all the blessings I know how to muster up.
Marie

Good News: CEA is 2.1

I got the wonderful news that my most recent CEA is 2.1. Below 2.5 is considered normal, so big sigh of relief here.

In the past, my CEA has been a reliable indicator of tumor growth. Each time it went up, there was a tumor growing in my body. Thankfully, the number has been getting smaller each time we test. And while this is a relief, I alternately hold tightly to this good news, even though it is like holding onto sand, or I project myself into the future and worry about whether it will stay low. When I feel like my best self, I do try my best to stay in this moment and enjoy it for what it is.

The past couple of weeks have been fantastic. We enjoyed fabulous weather (even the three days of torrential downpour), a boatload of interesting activities (kids went flying, swimming, sailing and fishing, and I even made JAM for the first time ever), and warm, fun visits with friends both at home and away.

After a wonderful two weeks, it felt strange to walk into the infusion room. No matter how normal I feel, this place makes me revert to being a patient. It helps that I have a tendency to get to know the staff, but, despite the friendly conversation, there are constant reminders that I'm the patient and they are treating me. They are the ones who take my blood pressure and oxygen levels. They have the liberty of commenting on my weight. They lead me to the chair where I will sit for a few hours (sometimes in a private room, sometimes not) and hand a blanket to me. The nurse sticks a needle into the port my chest to draw blood, making sure that my white count, red count, platelets, etc are strong enough for me to have chemo this week. The doctor talks with me to find out about the things going into my body (eating okay?) and coming out (vomiting, constipation or diarrhea this week?).

Even after the nurse leaves my little infusion area, I inadvertently listen to the conversations from the other rooms: How much nausea are you having? Are you taking Emend? Decadron? What are you eating?

When I am outside of Mass General, I feel great. Inside here, I am reminded that not everyone expects me to have good blood pressure and oxygen levels, a healthy and stable weight, and good blood counts. The fact that I haven't thrown up or had digestive problems is considered to be good news. But, it is also a reminder that these things are expected. I tend to try and live up to expectations, so I need to fight that tendency here.

Though I sound like all this is happening "to" me, I admit that I participate in it. For example, I subscribe to a number of health newsletters and news updates specifically related to cancer and colorectal cancer. The emails provide random reminders that I am in that world, too.

The articles in the emails are informative and sometimes relevant. A recent update referred to a study revealing that, in people under 40 years old, rectal cancer has been on the rise since 1985.

I don't fit the description of the typical colorectal cancer patient: older male who eats red meat. As I meet more people who don't fit the mold, I keep developing theories of other risk factors. The scientific side of my brain knows that we ignore data that lies outside our theories, or we treat that data as an exception. I want to scream, "Update your list of risk factors to include these outliers!" But it takes alot of exceptions to get our attention, so few studies are done on those outliers, like me. Or maybe I am simply just looking for an affinity group.

Regardless, I read this report with fascination. I talked with my husband and my doctor about the study, excited that someone noticed a pattern outside the standard assumptions. I felt a certain connection with this group and was happy to feel noticed in this way. Then I realized, I'm not actually under 40!

So here I sit, in my over-40 body that feels great when I keep my mental gymnastics out of the mix, waiting for my chemo cocktail. Thank you for all your prayers and good wishes. I know that each of you has your own particular challenges, either personally or with someone you love, and I really appreciate that you share your positive focus on my treatments as well. It makes more of a difference than I can describe. If you think of it (or even, right now!) send some quick good wishes for a good chemo session and chemo week. And I'm sending those right back at you!

Love,
Marie

CEA results are in, and the news is good!

I am writing this from the infusion room, hooked to chemo, so pardon any fuzziness....

I got some great news -- My CEA level is 3.2! Or, maybe it is 3.1. I don't remember exactly, but I do remember that it is below 3.5, which was my previous low number. I saw that about two years ago, and haven't seen it since. So, this is truly cause for joy!

Of course, I can't just revel in the good news; I have to find the angst somewhere. And right now, it lies in two places:

First of all, 2.5 and below are considered to be normal. While the rest of my bloods are great compared to the average person walking down the street, I know that I need to get this tumor marker as low as possible.

Second, and even bigger: As I begin to enter any scary phase of my life, I am more reliant on my faith and acknowledge my dependence on God and elements greater than myself In fact, I usually just hand the whole thing over, saying, "I know I've made a total mess of this. Can you fix it? I promise I'll do ANYTHING!"

When my life starts to feel more "under control," I tend to think it is under MY control, and then become more lax in my faith and practices. That shift bothers me. This falls into the same bucket as, when something heartbreaking happens to me, I have huge compassion for everyone, but when things are going well for me, I am a bit more judgmental of others.

Lately, I work to stay aware of this, and try various approaches to live more consistently with faith and compassion. Given that I know how hard it is to maintain these, I am especially thankful for yours on my behalf, and very impressed that you keep it going. I know that my quality of life and relatively good health stems from that.

Also, so many of you, of us, of those we love, have been through and are going through all kinds of heartbreak, pain, diagnoses, treatments. Please know that I pray for you, and if there is something specific I should focus on, let me know. Truly.

Last week, the homily at church really touched me, and I'll share one aspect with you. "Jesus came to form a community of faith, not individuals of faith."

Regardless of your religious beliefs, I sincerely appreciate your being part of my community. It is powerful. Thank you.

Love, Marie

Good news from PET CT

Writing this before I get hooked up for chemo....

Thank you so much for your good thoughts and prayers! I JUST got the results of my PET CT and they are good -- yay!

What exactly does that mean?
Well, we know there was tumor left behind in the surgery, but if it is still there, it isn't big enough to show on PET CT. That is a big relief.
There is a new spot on my liver, but it doesn't appear to have the same characteristics that my tumors typically have, so they recommend a follow-up MRI but aren't too worried about it. Again, whew. Okay, not total relaxation, but could be worse, so I'll take it.

My type of cancer also shows up in the CEA levels in my blood, so I get that tested every month. Last time, it was 6.4. Normal is below 2.5. So, there is still stuff in there, but at least it is smaller than it was. I asked them to test it again today. I won't get the results of that until either next week or next chemo. They don't like to give these results over the phone, but many of the folks here will tell me, kindly knowing it is more anxiety-producing for me to wait.

All good things.

Thank you for keeping me company on this journey, and for being there to share this news.

Lots of love,
Marie

CEA now considered normal...barely

Thank you so much for your supportive messages, your kind words, positive thoughts, prayers, phone calls, visits, wisdom, EVERYTHING. Thank you for letting me air my frustration and fears. You guys are such an awesome group!

I got my blood numbers and at 3.4, I'm told that they are below what is considered normal and that is good.

While I am relieved at the trend in the right direction, I can't just settle for that, right? I grilled the doctor on the fact that everything I've read says that 2.5 and below is normal. They assured me that it depends on the labs and other things, and that for patients at MGH, 3.5 and below is considered normal. It does make me feel a bit like a remedial student, not expected to do the things that "normal" kids can!

Anyway, no more tests and blood tests for now. whew. Thank you so much for talking me off the ledge.

My next step: To make sure that my last surgery healed so that they can reattach my colon. I was supposed to do that on Monday but my butt is still so sore that I can't put it through that procedure. (They shoot a liquid into it. Lovely!) So I'm waiting on that for a few weeks.....One step at a time.

I have to say that getting positive news does so much for my attitude toward life. I can easily see how this could get someone totally down, and can really appreciate how heroic (for lack of a better word) it is for someone to have a positive attitude when facing a stream of bad news.

For now, though, I'm so happy to be where I am.

Much love to all of you,
Marie

After the PET CT

Thank you so much for the great vibes! I did the whole PET CT routine myself and I think I did okay! I kept picturing a friend in the chair next to me, and that made me smile. But I'm glad you weren't there. Though the official line on the radiation I got is that it is okay to be around the general public, the nurse, unprompted, told me that her off-the-record opinion is that I should stay away from people as much as possible for 20 hours. So I am.

Because I am a hard stick, I arrived early to get an IV nurse. She did this really cool thing to try and find a vein -- instead of the rubber tourniquet, they used a blood pressure cuff and found a vein, in my arm, that I don't think anyone's stuck before. And did it, first try. That nurse was awesome.

The radioactive stuff that they injected into my veins came in this metal case with extra padding inside to protect whomever is carrying it. Lovely thought. No wonder my veins rebel. They probably wonder what toxic chemical is coming next.

The people were really nice, and the test went smoothly.

After the whole thing, I went to Whole Foods to get big bottles of water and some organic greens to balance out the whole experience.

Results are in on Friday! We are visualizing randomly fluctuating cea levels for no apparent reason.

Love to you all,
Marie

Moderately high CEA

I'm bumming out.

One of my lovely oncologists called today. Sigh. My first impulse is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.

CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google; I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for). My doctors feel anything below 3.4 is good.

My white counts have gone low again, too.

I hung up the phone and cried.

Then, life continues. The phone rang again. I thought it was the doctor with more news. But, it was a friend. We hadn't talked in awhile and she was on her way to pick up her kids, with a few minutes to spare. When she innocently asked how I was doing, I burst into tears again. But I have to admit, it felt so good to talk with her. I am grateful that she acted on her inspiration to call me at that moment. It was just what I needed.

Connecting with Susan gave me energy to take the boys and do some retail therapy at Winston's Flowers. A few containers, plants, and flowers later, I felt a bit vindicated. The boys had a great time playing in the water fountains and were soaked through. They wanted to ride home naked. Fine with me.

When I drove up to the dock to load my purchases into the car, the saleswoman marveled at my calm. If only she knew.

I'm getting re-tested next week and hoping this is all just a fire drill.

CEA levels higher

Once again, a call directly from a doctor. Sigh. My first thought is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.

CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google, I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for).

I'm getting re-tested next week and hoping this is all just a fire drill.