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

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

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

Found the tumor via surgery!

To those who have written recently, thank you so much for your notes, prayers and concern. I can't tell you how much it helps!

Catching up over the past couple of months:

In May, my husband had surgery for thyroid cancer, and had his thyroid removed. That same week, my blood tumor marker started to rise, indicating possible cancer. The PET CT showed some "activity", but subsequent ultrasounds and an MRI could not find a tumor. I wrote it off as a medical miracle.

In July, I got re-tested, and my blood tumor marker was high enough to indicate definite cancer. A new PET CT showed "activity", so we skipped the ultrasound and MRI and went straight to surgery. There was a risk that they would find nothing, so they left it up to me, and I decided to take that risk and move forward with the surgery.

It was almost comical to try scheduling my husband's radiation therapy (where he cannot be around other humans for quite a few days) and my surgery (where I will need his help). Plus, it is August and the surgeon was planning her vacation.

The week before surgery, Tiron had radiation therapy, which required him to be in isolation (but not in the hospital, go figure). So I left town with the boys and had a good time visiting relatives. When I returned, I went into the hospital for my surgery.

The surgery, overall, went well. They found a pea-sized tumor in my rectal area, and removed it along with my entire rectum, lymph nodes and fatty tissue. I lost a ton of weight as a result, but I don't recommend this as a weight loss strategy! It was open abdominal surgery, and, wow, I'm sore! They were able to reattach things, and I have a temporary "bag" while that area heals. I'm grateful that this is temporary.

The bag itself is a weird concept. I had no idea, but they actually PULL YOUR SMALL INTESTINE THROUGH YOUR ABS. It sticks out of my stomach like a tongue. Weird. And the bag stocks to my skin and hangs from that and catches whatever comes out.

The bag itself is easy to manage, but psychologically, this is hard to get used to.

The other hard psychological thing is simply going through all this again. I'm not bouncing back the way I have in the past, with strong faith in God and in the future. I worry whether I will see the boys grow up, and realize more acutely that people do die young. It makes me really sad, and while I try to change my thoughts, these are the ones that come creeping in.

I also feel a bit removed from God and from the greater good of the Universe, though I do keep getting various signs. Like, I was in bed in the hospital, feeling sorry for myself with this bag, when my much younger roommate, almost as though she could read my thoughts, volunteered to tell her story and that hers was permanent. And she was dealing with it much better than I was.

Or, when I was in the hospital, I remember really needing to connect with this guy, Ray. Ray was one of the guys who built our house, not even the main lead guy, just here occasionally, but I always got a particular calm when he was around, and he prayed for me last time around. I remember really needing to see him, and thinking, oh, well. I can't just call him.

When I got home, Tiron told me that Bob was going to be here soon to fix the screen doors. But Bob happened to send Ray. It was like an answer to my prayers. So, there are those events, and I'm trying to grab onto those and claw my way back to some place of trust and peace. But I'm not there yet.

My parents are here to help with the kids and the running of the house, and the neighborhood has really banded to together and they are delivering meals. Logistically, we are doing okay, and I just have to pull myself out of this ditch! So do send prayers, positive thoughts, whatever you can spare!

I am waiting for the doctors to call today with the results of the pathology report, and it is making me more anxious than I can remember being.

I hope you all are doing well! It has been a glorious summer overall, and I LOVE this weather.

Much love,
Marie