Surgery cancelled

Thank you for changing your plans and making room to help us. I am so touched and grateful for your generous heart. I didn't realize that help could come in so many forms, and in so many ways.

Before you go too far, I need to tell you that the surgery was cancelled as of tonight. Thursday's PET CT revealed two new tumors, one of which is outside the surgical area. It doesn't make sense for me to go through this surgery if we aren't going to get all of it.

There was alot of swirl here tonight, but I am very grateful to my MGH surgeon and my UMass surgeon, both of whom took their time on a Friday night to go over all this with me.

We will decide on Monday what to do next. 

Thanks for riding this roller coaster with us. I'm feeling okay - a little stunned, but basically like this surgery wasn't really meant to be. And I'm glad that we found these tumors before I got cut open. The kids have absorbed the stress of all the sudden phone calls and medical conversations, so we are managing that.

If you are still focused on Sept 16, please send your prayers and good vibes to my soul sister, Shira, who will be embarking on her treatment that day. She is headed for China to do a really cool treatment that they do here in the US, but not on our kind of tumor. They are doing these treatments in China (as well as the UK and many other countries) with good results. I'm cheering her on and hope you can, too.

More to follow. Thank you for staying tuned!

Marie

The path to surgery is paved with tests and good intentions

Thank you so much for your notes of support, your suggestions, your funny stories. Thank you for being there and for helping me to feel less alone in all this.

I did get to move the surgery date. It is now on Friday, September 16 at UMass Worcester with Dr. Laura Lambert. I expect to be in the ICU for two days following surgery, then in the hospital for about 8 days after that. The recovery itself, I'm told, is 3 - 6 months. Of course, I'm aiming for two months.

I am feeling so great right now. It is hard to imagine how I will feel in about two weeks.

For those of you who have asked what you can do, here is my little list:

1. First and most of all, I can use your prayers (or whatever your version of this may be). I welcome prayers for healing, for guidance for the doctors, and for anything else you are inspired to pray for. I cannot overstate the difference that this makes in my healing. I know this is how and why I have come so far already. I thank you from the bottom of my heart for your part in this for my past surgeries, and if you can do this again, it will be huge for me. 

2. Physical presence at the hospital. Once I am out of the ICU, I am told that it would be very helpful for me to have someone in the room to get help if I need it. I know that the hospital is one hour outside of Boston, and that this is alot of hours out of your already busy schedule. AND I won't really be up for conversation or even much to look at. You'll have to bring your own entertainment. But it is helpful and maybe you can get some work done or a book read? This also entails picking up food from my mother and delivering it to me.

3. Meals at home. My parents will be running our household while I am in the hospital. I am not sure how long they will stay after I return home. At that time, we can definitely use some help with food, mostly for the kids and Tiron. 

4. Nighttime help. We are looking for regular help with the kids for nights and weekends. If you know anyone looking for that kind of job, send them our way!

5. Last but not least, if you are involved with our children, we appreciate any support you can give them during this time.

I think that covers it. Let me know if I forgot anything!

These past two weeks feel like they have been all about new beginnings, in a way. Along one vein, we were finishing up summer vacation with the boys, getting ready for the beginning of a new school year. Along another vein, I was finishing up my chemo vacation and getting ready for the next step in healing with this surgery.

Last week was truly the week of medical tests. I was in the ER on Tuesday (more on this later), had an ultrasound on Wednesday to determine the source of the bleeding (which, of course, stopped two days before the ultrasound), had my pre-surgical tests in Worcester on Thursday (checking my heart, etc. to make sure that I was in shape for surgery), and a PET CT scheduled for Friday. My psyche must have said, "Enough" because I mistakenly ate a rice cake before the PET CT, which was strictly not allowed. So, needed to reschedule that.

The ER visit....Warning: This will be TMI for many of you, so you may want to happily sign off now.

On Tuesday night, my stoma started "growing." My stoma is the polite word for the piece of intestine that sticks out of my abdomen. It has grown in the past, and then gone back to its normal self. So I didn't initially worry about it. Around 10 p.m., I was suddenly aware that it had grown to the size of a grapefruit. It was freakish-looking, and it was so large and heavy that it took two hands to hold it up. 

I avoid hospitals but I knew I had to get to the ER. I watched the kids sleeping, thinking that we finally got them to some semblance of security. Now, we will once again disappear during the night, and they will wake up to the unexpected. I felt so badly for them. I hoped this would be a quick visit and that we would be home when they woke in the morning.  We couldn't wake them to let them know we were leaving. That would require taking the time to orient them and explain what was going on, and I didn't feel I had that time.


We called someone to watch the boys, and Tiron and I raced to the hospital in my old car, as opposed to his new car. The kids are not allowed to eat or drink in that car. There was no discussion about allowing a freaky intestine that looked like it was about to blow.

The nice folks at MGH wheeled me into the ER while Tiron parked. I went through the check-in process, all the while holding this thing that was getting bigger and drier and darker. Drier is not good. Darker is worse. Darker means that the blood supply is getting cut off. And, I learned, it wasn't simply "growing;" my intestine was literally coming out of my body.

I have a pretty high pain threshold, so on a scale of 1 - 10 (10 being the worst pain ever), I told them it was a four. Fine. I got put in the waiting room with everyone else. Then I realized....I can't politely wait my turn. And, I didn't do this on purpose, but here is what happened next: I started to act like I was giving birth. 

I got out of the wheelchair and paced. I started screaming. And then screamed louder. A nurse came over to shut me up and I showed her what was going on. (No one wanted to see this before then, and I don't think she did, either.)

Her eyes got large and she ran to find a room for me. They soon wheeled me past a large number of patients in the hallway, waiting for a bed. While I was glad to get fast service, I wasn't so glad to need it.

I also didn't want to need it at the end of August. All my doctors were on vacation, and the new residents had been there only two months. Two residents were checking me out. By my estimation, one was a third-year surgical resident. I'll call him Max. The other doctor seemed like a first-year resident. I'll call her Cindy.

They stood on either side of my bed, examining this enormous, weird thing on my belly. Max would politely listen when I talked, as if somewhere in his training, someone told him that he had to listen to the patient. But I never got the feeling that my words got through. 

Cindy started trying to push the growth back into my abdomen. I didn't watch what she was doing, but I was already in alot of pain and that hurt, too. I'm comfortable dealing with pain, but I scream. I don't mind screaming, but it seems to upset everyone else. Since they couldn't push it back in without my screaming, they stopped. Max decided, a bit too eagerly in my opinion, that I needed emergency surgery, and he left to assemble the surgical team.

Tom arrived to hook me up to an IV. I asked him to use the port in my chest rather than a vein in my arm, and he readily ignored my request, heading straight for my arms. Thankfully, Tiron intervened and convinced Tom that it would be much easier to use my port than to find a good vein. I hate that helpless feeling as a patient, and especially feeling like I have no voice. 

All the while, my mind was racing. I need my limited veins for my big surgery, not this one. If I have this surgery today, it will put off my other surgery, which is more important to my life. Plus, I would not be home for days. Yet another instance for the kids -- they go to sleep, and who knows when they will see their mom again. Not exactly your ideal childhood. I would have to reschedule my next-day ultrasound. And my upcoming PET CT. My mind was trying to handle the logistics.

Cindy returned to my bed. "I saw this doctor once push in a hernia. She's incredible." She looked at me a little shyly. "It's a long shot. Would it be alright if I went to find her? I don't know if she is even here, or available."

"Sure," I told her. Why not? I thought. I live for long shots. Tom had given morphine to me, and Zofran (which I hate), and I was now a little easier to be around.

And then, Karen Kim appeared. It was like the sky was blue and the heavens parted and there she was, next to my bed. Outside my curtained area, the surgical team assembled. Anesthesia was hovering. The surgeon was pacing. He told Karen that she had one shot and had better hurry. They were ready to take me in. Karen calmly and firmly told them to wait, and not to pressure her.

She and Cindy stood on the same side of my bed. They adjusted the bed so that my head was lower than my feet, and I closed my eyes. I could hear Karen tell Cindy that this requires patience, and I listened as she calmly described what needed to be done. I don't know who actually did it. I remember seeing the guys outside, peeking at me through the curtain. And then, suddenly, I felt all better, and I heard Karen say, "It's done. What do you think?"

The other doctors came in to see it - there was alot of disbelief. And alot of relief, but that was mostly mine. I was promptly discharged. They needed the bed.

A few days later, I drove past a man holding up a sign. It said:
Your change
Can change
My life.

I've been too cynical to believe that small change can actually change someone's life. Then I remembered my hours in the ER, and the risk that Cindy took, trusting her idea and going for it. Because of her, we returned home before morning. I didn't have to postpone my big surgery. The act of one person during a night of many acts in a busy ER, her "small change," literally changed my life.

Your prayers do, too, as well as your presence. I don't know how I can repay you. My gratitude is huge. Thank you.

Marie

It's Door #3

After much soul searching and research, the decision is....Door #3. I am going for the big gun HIPEC surgery. It basically came down to this: I am up to bat. My team is hanging in there but could use a comfortable lead. I could hit a solid single with the proton beam radiation (Door #2). Or I could go for a home run with the HIPEC surgery. I could clean up the bases and we would have a fighting chance at a solid win. I don't know if I will get another at bat. Now is the time. So, I'm going for it. 

Thank you for your support on this, your thoughts and prayers and suggestions and general notes of support. I read and re-read them (even if I don't always answer) and they are so energizing to me.

If you want further information on the surgery, here is a link to a recent NYTimes article:

http://www.nytimes.com/2011/08/12/business/heated-chemotherapy-bath-may-be-only-hope-for-some-cancer-patients.html?_r=1&scp=4&sq=hipec&st=cse

Tiron is INCREDIBLY organized with my medical files, so we were able to connect with doctors relatively quickly. We talked with Dr. Paul Sugarbaker in D.C. (the granddaddy of this surgery in the US) and Dr. Laura Lambert at UMass. Talking with Dr. Lambert, I felt such relief that i could cry. Or maybe I just wanted to cry that I am in this situation having this conversation. Nevertheless, she is the walking persona of a great doctor for me: Confident without being cocky, optimistic without false promises, and caring with a solid base of experience. We considered talking with doctors in Pittsburgh, but I couldn't even imagine anyone better than Dr. Lambert for me. 

In addition, we talked with people who have been through this surgery. I have to call one more person on my list, but overall, everyone who has been through this agrees that this is one big surgery though well worth it. You know how you go for your first bikini wax, and quite a few friends will say that it smarts, but there are also a few who will say, "It isn't so bad." Well, there is not one person who is saying, "It isn't so bad." THAT is scary.

It is also sobering to think that, for as energetic and strong and invincible as I feel right now, I know enough about surgery to realize that it totally knocks you on your butt. 

The good news -- remember, this is all relative, but hey, I'll take it -- is that they have simplified things somewhat so my hospital stay won't be as long as they used to require in the past, and I don't need to go home with a feeding tube. Yay! I hate being in the hospital, and I love to eat. At first, I thought this meant I was getting "HIPEC light," which I didn't want. If I am going for this, I want to do the whole thing. But Tiron explained that in years past, heart surgery required a longer stay in the hospital than it does now, so I do believe that I am getting the full treatment here.

We continue to see what else is out there. There is a place in Germany where they analyze your blood and determine whether the chemo you are getting will do anything for the tumor you have. (I'm not sure I got that description completely right.) So we are looking at that. There is a place in California that does something similar if you have a tumor that has been extracted in the past, say, 24 hours.  I have to say that the best thing I've found is in China. I'm not going for it, but I'm following the blog of Terri Taylor, the Pittsburgh journalist who is currently being treated there for rectal cancer. I'm very intrigued and hopeful. Ironically, she reported on this very treatment in the 90's. It is used in the US for other cancers, but not all cancers. 

Yes, I have become one of those people chasing all over the world for what I can find. I used to think those folks were pathetically desperate. Of course, whenever I judge someone, I find myself in their shoes. And I don't actually feel desperate. I mostly feel like not everyone does everything well, and the world is small. So where once you might travel to, say, New York, to see a specialist, you might now travel to Germany or China. Of course, it is still more time-consuming and expensive. Details, I suppose.

Okay, we got the decision down and had a plan. We would get the kids settled in school, and then do the surgery. My rock star MGH surgeon was even available to be there, which comforts me as she knows all the parts of my abdomen as they are currently arranged. (All my insides are in new and different places than they were when I was, say, 40.) She has also become my security blanket. We aimed for the week of Sept 16.

KEY WORD: Plan. Ugh. 

Psalm 33:10: He frustrates the plans of the peoples.

Or, as Woody Allen says, "If you want to make God laugh, tell him your plans."

Plans in place, we left for a two week vacation on Cape Cod. The week started off with intense abdominal pain for me. I could walk around but in definite pain and couldn't eat for three days. I suppose it helps my swimsuit body, though with a breast prothesis and colostomy bag, I don't worry so much about how I look in a swimsuit. Then, I started bleeding from parts where I should not be bleeding.

Off to Cape Cod Hospital for a CT scan to see if there was anything big and scary causing the bleeding. That in itself was borderline comical - so many old people that I hoped they were there for the AC. Add to that a CT tech who smoked a cigarette just before seeing me. I couldn't resist unloading on him. Of course, he got his revenge by scanning me THREE TIMES just to see if I had the correct port in my chest. That is before he even did the scan I came for.

Tiron got a copy of the scan so that we could check it out ourselves at (our rented vacation) home. I didn't envy him. We wanted to know, but it was still really scary. The good news is that there was nothing big and scary and new showing up, though the liver met we knew about grew a little (not unexpected) and there appears to be a new liver met who decided to join the party. The written report from the doctors later confirmed all this. Weirdly, I was relieved that that was all there was, and we went on with our vacation.

We had a GREAT vacation. Idyllic actually. But the bleeding got worse, so we headed home on a Friday morning.

That afternoon, I set up an ultrasound for the bleeding, a PET CT in preparation for the surgery, and got a surgical date of Sept 12, which I am trying to change because the kids will have JUST started school and I want them to be a little more settled. Plus the last time I was in the hospital on Sept 12, we had a baby who died so that week still carries alot of emotion for me. Life is so complex! I set up the anesthesia appointment and an appointment with the surgeon, and started the process of booking rooms nearby for any caretakers to stay. So the wheels are moving quickly. My head is spinning with everything I should be doing here to get everything set and everyone ready for the change to school and for my hospital stay and recovery. Kind of like hurricane winds on the inside to match the hurricane winds on the outside.

So I will leave you with this comic that someone found for me. Definitely expresses my state my mind at times during my chemo vacation.

 http://xkcd.com/931/ 

Be well, and hug someone today!

Love and prayers,

Marie

Deciding among three treatment options

Thank you for staying tuned and for your patience. The past two weeks have been filled with doctor appointments as we sort through this.

The MRI confirmed that the lesion on my liver is indeed there and cancerous. I considered my liver to be a "no-fly zone" when it came to cancer. Looks like we have a violator. 

The next step is to decide what to do about it. It is located near / on the edge of the liver, near the diaphragm.

Luckily, I get to choose what is behind Door #1, Door #2, or Door #3. I suppose I can also pick what is in the envelope that Carol Merrill is holding, some as-yet unrevealed goodie.

Here are the options as I see them:

Door #1: Stereotactic ablation
This radiological procedure, often used for liver lesions, applies heat or cold to freeze the lesion (think - like a wart). However, because of the location of mine, it is a bit more complicated to protect the diaphragm. Still, it is do-able.

Door #2: Proton beam radiation
My mental picture of this one is that they shoot a proton "bomb" filled with radiation into the lesion. Once it reaches the inside of the lesion, the proton is programmed to release its radiation. Very high-tech, and, as side effects go, minimal. It takes about 2 weeks of prep plus two weeks of treatment, then is done. It has been effective for lung lesions, but is still in the experimental phase for liver lesions.  It doesn't sound like the most comfortable procedure, but it doesn't feel scary to me, other than the fact that there will be much radiation used, as well as a few CT scans (meaning more radiation) for guidance. 

Door #3: Surgery
Those of you who have been following this saga for the past few years may remember the big-gun surgery that I talked about awhile ago. Though MGH, Dana Farber and Sloan Kettering don't yet do it, I could have it done in the D.C. area, Pittsburgh, central Mass and Europe. Makes it feel a bit exotic and almost sexy. THAT is how weird my world has become.

Here is how I think of this option -- they open you up, cut out everything they can find, "thin" the peritoneal fat, then pour hot chemo into your abdomen and massage it into every place possible. Then they close you up and turn you like a pig on a spit, so that the chemo flows into the nooks and crannies of your innards. You wake up with a minimum of 17 tubes sticking out of your body. As scary as that sounds, I considered that it would be scarier to wake up with no tubes, indicating that they couldn't do the full surgery. Anyway, the hospital stay is something like 4 - 6 weeks, followed by recovery at home. It does sound brutal, but it brings a possibility of a cure, which the others do not.

Oh, and as a bonus prize, no matter what door I pick, I get to return to chemo again!

Still, I do feel fortunate to have choices. That week in particular, when I was faced with the deaths of others who have so graciously handled all the crap that cancer deals, I am especiallly aware of the fact that I am lucky to still be walking on this earth. 

I had this in mind when I walked past a man in Harvard Square holding a sign that said, "Cannot work due to disease." Wondering what he was facing, I decided to talk with him.

"The doctors found a spot on my liver and they need to biopsy it," he said.

I couldn't figure out how this kept him from working, and I am sure that showed on my face. 

He continued, "It might be cancerous."

He started to describe the biopsy procedure. Even knowing the fear of facing the unknown, I had experienced too much this week and needed to consciously muster some patience for this.

I decided to tell him, "I have a lesion on my liver. And they know it is cancer." I tried to say it kindly.

And then I realized, he felt overwhelmed and completely alone, unable to connect with even another who is on that path. Not only was he lacking financial resources, he also lacked the inner resources to deal with whatever life threw his way. No amount of money would fix that.

I thought of the two people I know who died this week, how they were both younger than him, how they handled their situation with grace and strength. I thought of how their families and friends supported them so closely that the path was not just patient's but woven throughout all their lives, how they remain connected in spite of the risk of intense grief. I thought of how they carry that person with them in so many ways, how they help their love to endure, and how we all support each other as we face life's joys and challenges. 

Of course, he could have been feeding me a line. My kids even said, "Did you see those muscles, Mom? How could he be homeless?" 

Comparing my situation to the one he described, I feel fortunate indeed. Thank you for being open to us, for allowing us to impact you, and for hanging in there with us. And if you have any idea of how I can make this decision, let me know. I've never been good at Let's Make a Deal and can't even decide on dinner at times; how can I decide this! 

Much love and laughter,
Marie

PET CT shows activity, requires further testing

Thank you for being here for me, in the midst of everything that is going on in your life, and in the midst of this amazing summer! And in this crazy world of so many things to pray for, thank you for continuing to keep me in your thoughts and prayers.

I wanted to share the results of last week's PET CT. I can't say this is a total surprise, but I was still stunned: The PET CT revealed "some activity" on (in?) my liver, and my CEA rose by 1.5 points to 3.7. (Normal is below 2.5)

In the category of things can always be worse, I hated that my CEA kept rising by 0.2 every month. Of course, now I would love to have a rise of only 0.2!

Of course, I would love to not be concerned about this at all. It took a few days after hearing the news to regain my footing again. It has been marvelous to be chemo-free for almost six months, and I want more of THAT.

In those six months, I feel like I've been able to look more outside myself. I could enjoy time with Tiron and the kids, be more involved with their activities, consider volunteering and doing other things that are just plain fun. I truly loved doing simple, everyday things. I even loved being able to wheel in the trash cans, especially since that is so out of character for me. 

Also during those same six months, it has been sobering to see so many others dealing with various forms of cancer. The parents and siblings of my friends. Parents of my children's friends (who are now friends of mine). Friends from high school. New friends. Friends of friends. And, in the category of "most heartbreaking," children of my friends. I hope that I can be as supportive of them as you have been of me. It is an honor that they invite me to be. 

Yesterday, I learned about an incredibly nice guy, who sometimes works on our house, always with a smile and good cheer, who was just diagnosed with a life-threatening cancer, and his road appears uncertain. Sole breadwinner in the family. Oldest child is around five years old.

It can feel so overwhelming.

Yet it is vitally important that we are there for each other.

On the day I had my PET CT, a friend was having a CT scan on her hopefully-gone tumor. Her test was in the morning; mine was in the afternoon. 

Even if I can keep my anxiety at bay, there always seems to be some fumbling around these appointments: A bad stick to my arm. A bad attitude from someone. Something that can turn an already-stressful day into a bad experience overall.

But, on this particular day, my friend left a note for me. A short, scribbled note on a small piece of notebook paper. For me, it was a warm and wonderful gift, making me feel like I had a friend in the room.

For the staff, it was an energizing force that literally passed through them. Everyone I ran into, when they learned my name, asked if I received the note. And when I said yes, they brightened up and then talked excitedly with someone around them about the fact that someone had left this note for me, highlighting their role in getting it to me.

These little things can change the course of a day. I was beyond touched that a friend would think about me on the day of her own big test, write a note and actually deliver it to the department where I would be. It changed my entire experience of the test. Now, instead of remembering the test itself, I primarily remember the note. 


Plus, we were all thrilled with the realization that that little scrap of paper made it to me despite shift changes, messy desks and staff who have many other patients to think about and treat. That little note brought more joy and good feelings than I think she could have conceived. With it, she lifted me, a whole department, and the ripple effects from there.

So, for all of us, whatever we are dealing with, I send out my best and aim to do what I can for everyone who needs it. 

Next step: I had an MRI this morning to get a better look at this. Stay tuned. Thank you for being there, for your prayers, and for every little thing you do. 

Love,
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