Back on chemo and....an offer

Lio by Mark Tatulli

http://www.gocomics.com/printable/lio/2011/09/13/

This comic captures a part of my life lately. Thank you for being my safety net, especially when I am hit into a hole. 

The events of the past few weeks highlighted, for me, how important it is to have someone present in your life. Your notes and passing conversations mean so much. I couldn't answer from the dark place I was in, but I really appreciated them and read and re-read them. 

Even if you didn't reach out, please don't worry about it. Before I entered this crazy cancer world, I had no idea of what to say, how to say it, etc. I still don't know what to say when I encounter this with someone else.

Thank you also for signing up to bring dinners to us. We initially put two months of dates on the calendar, just to see what works. Unfortunately, we will need dinners past then, so once we figure out the routine (you'd think I'd know this by now!), we'll send out more dates. Stay tuned if you are interested!

I was initially relieved to start chemo this week. When the surgery was cancelled, I found myself in the odd position of actually hoping that I could get chemo. How ironic is that?

In spite of my gratitude for it, the treatment hit me with a bang. Chemo is cumulative so I understand, for example, the 10th treatment feels harder than the first. But, I thought that after taking such a long break, this first treatment back might feel more like my 20th. 

No -- it was more like my last treatment in January, picking up exactly where I left off.

I was sick, didn't feel like myself, couldn't think clearly, and didn't even get out of bed for almost three days. Once again I found myself with the familiar runny nose, the inability to clear my throat, the chemo taste in my mouth and the smell on my skin. On top of that, my tumors are painful and I have an almost constant stomachache. Those last two are new experiences for me. 

The kids seemed to deal with it well; they needed to be near me and played around me and were generally well-behaved and easy-going in my presence. It didn't matter if I could actually participate or even move - they dealt a hand for me in games of Uno and laid my cards on my belly. I was a grateful recipient of their spa treatments (Aidan's newest business idea), and their captive audience as they read books. They were calm and sweet and kind. 

When they weren't with me, I could hear their stress. They didn't want to leave me to go to school, they didn't want to play anywhere but near my bed. They would fight with each other and with Tiron over the smallest detail. 

This whole situation stunk. After four days, I decided that I couldn't do it again. I just couldn't do any more chemo. It was taking too much of a toll on me and on everyone around me.

I started to think: Everyone dies. Maybe it is better to just get it over with. There is something to be said about living your life without the pain and sickness of chemo or other treatments.

During my three trips to the hospital this week, I saw people in various stages of physical distress. Some were in wheelchairs, some on stretchers, others sitting silently with their discomfort. I tried to see what made them continue on each day, but I couldn't uncover anything

Yesterday, Thursday, I pulled my sorry butt out of bed and dragged it to yoga class. I spent the day forcing myself to consciously pay attention to and be thankful for specific things in my life, trying to find reasons to move forward. My yoga instructor was back. My acupuncturist offered to treat me while on her maternity leave. I am immensely grateful for these things, but they weren't reasons for living.

I went completely off my diet. I ate cheese, wheat crackers, watermelon, chocolate. I had a glass of wine. Those were good, but not as satisfying as I remembered. That night, I attended Curriculum Night for parents (also known as Back to School Night) at the boys' school, primarily in search of brownies.

Our two boys attend the school, one in third grade and one in Beginners (pre-K). Tiron and I split to cover both classes. Tiron suggested that I attend the third grade class discussion because I am usually the one to help with any academics. I told him that I wanted to go to the Beginners class tonight. I thought, but didn't say, that maybe he soon would be the one primarily helping with third-grade homework.

Once in the Beginner classroom, it was good to see the children's work and connect with the other parents. The teachers did an amazing job of presenting the Beginners class information. It was calming to hear their warm description of what the kids learn as they play with blocks or devise a dress-up scenario. We learned how the children will begin to collect and graph information, how they will write a story with their own made-up character, and how they will typically navigate friendships as the year progresses. 

I read Julian's description of himself: He lives with his brother, Aidan, his momma and daddy. He wants to be a race car driver when he grows up. The teacher explained, "He initially said that he just wants to be a grown-up." Me, too, honey. Me too.

To conclude the evening, the teachers ran a slide show of photos from the first couple of weeks. They played songs that, combined with the photos, make me teary (like, These are the Days to Remember by Natalie Merchant). I enjoyed the photos of Julian interacting with his new friends, swinging on the monkey bars, having a snack, reading a book, building a tower. I got to see the joyful faces of his classmates and realized that I totally love so many of them and am falling in love with the rest, as they are slowly making their own way in this new environment with joy and pride.

And that brought me back. For me, life is so much about experiencing these unchoreographed, unexpected moments, filled with love and shared with others I don't yet even know but who somehow become major part of our lives -- these surprise connections in each and every day. There is no way to know what is ahead of us, so we forge on and are often so fortunate to be bathed in joy and love.

I am happy for whatever circumstances allow us to connect. Your presence in my life brings me strength and joy. Please don't ever underestimate the power of that.

I am very self-conscious about taking more than I give lately. But I can offer this to you:

On Saturday night,  Tiron and I return to Lourdes. There is a spot where I can tuck a note: a request, a blessing, a prayer -- whatever you like. If you want, I would be honored to bring that for you or for someone you care about. 

I know this is last-minute, but if you can get it to me before Saturday afternoon, I will bring it with me. I promise that I won't read it!

Or, you can email it to me while we are there, though it would be more difficult for me not to read that if you want it to be private.

In the meantime, take good care, enjoy the day, and please know how powerful your presence really is.

Much love and many blessings,

Marie

An Encounter in the Waiting Room

I continue on the raw food diet. I'm not perfect at it, but I do stick to it most of the time. I try not to be obnoxious about it, though I may have crossed a line last week.

I sat in the waiting room near a family of four. The father was in his late 50's or early 60's. He was joking about waiting so long to see the doctor that they probably had pajamas waiting for him. I looked up and laughed.

From there, the parents and I started chatting about the things most chemo patients share. He looked good to me, but shared that he lost 40 pounds so far. His wife told me that she was 59; I could feel her positive energy, as well as her disbelief that they were even here. His daughter and son, in their late teens or early 20's, sat next in the line of chairs, each occupied by a book or their iPhones while they listened to our conversation.

We chatted about the length of the appointments, the fact that chemo wasn't working for him, how we both hate the IV fluids they give for dehydration. She was more factual, though cheery. He tried to make light of it all.

At one point, the snack cart came around, filled with items that I used to think were totally yummy: roasted peanuts, Lorna Doones, potato chips, apple juice, V-8...I declined. The family members each took a few treats. They advised me, in a friendly way, that I should take what I liked and save it for later.

"Like we just said, you don't know how long you'll need to wait here."

In response, I blurted out, "I'm not doing sugar right now."

They all stopped; even the kids looked directly at me. They all had hope in their eyes that broke my heart. I recognized that feeling; I do it myself, looking for a "cure" that might be out there, something I don't yet know or haven't heard about, a lifeline.

After what felt like a long silence but was probably only a moment, the wife softly asked, "Did the doctor advise that?"

I wanted to reassure them. Even more than that, I wanted that look in their eyes to go away. Plus, what do I really know. I am trying everything I can do that feels right to me, but maybe it isn't right for everyone.

"No, this is something I'm doing on my own." It is true, but even as I said it, I wondered, should I share more information? Is this something that could help him?

Then the father joked, "Sugar will make you even sweeter."

Again, something I recognized. The patient telling a joke to make everyone else feel better.

It broke the mood and we chatted lightly again until we were all called back into our doctors' offices.

As I was leaving my appointment, I caught a glimpse of them in their doctor's room. Their mood was no longer light, there were no smiles, and I said a silent prayer for them as I walked away.

Chemo status quo; Friendships and Memories

This has been a really great two weeks. My last chemo (two weeks ago) went, well, as chemo goes. Overall pretty smoothly.

My hair has thinned so my head gets cold, One of the women who works there is Muslim, and she taught me how to tie a headscarf. And when I went to MGH for my injection on Friday (I get an injection to help increase my white cell count), the nurse did an amazing Reiki healing. So the staff continues to be really supportive.

I got those awful stomach cramps again this week, but I was able to manage them with meditation. It was pretty amazing. I isolated myself from everyone else and concentrated only on my breathing. At one point, I found that I could separate myself from the pain, and, in that calm, I started to notice things. For example, I started to notice the feelings that would happen immediately after the pain would subside, which I never noticed before. And I noticed that the pain moved, slowly, along the path of my intestines. Yes, I was still out of commission for a few hours, but it was way more manageable than It had been in the past. I would love to be able to replicate this with any other pain -- it was pretty cool.

Other that that, it's been an amazing two weeks. Lots of celebrations and visits with dear friends. I feel so lucky to be able to do that, and to share these experiences together.

Because of that, I started to think about our lifetime of experiences with so many different people, and the subsequent stories we all have about each other. At the risk of letting you know how goofy I was at the age of 12, I share this email from a sixth-grade classmate. He and I haven't been in touch in YEARS, and I haven't thought about this event, oh, probably since it happened, but it was a memory that came right back to him:

-----
We're on a holiday road trip, and I heard a song on the radio that brought back a memory... Remember the song "Billy Don't be a Hero"? Well, I recall that in sixth grade we had to pick a song and make drawings that told the story of the song, then stand in front of the class and flash our drawings cue-card style while the song played. You...chose "Billy Don't be a Hero" and every time the word "Hero" came up, you had a drawing of a sub sandwich, very well drawn with a colored pencil. I don't even remember what song I chose...
-----

If someone asked about sixth grade, I don't think I would have recalled either the assignment or the song on my own. But, through this shared experience, he obviously holds a story of my life and a piece that is truly me from that time. I was really touched by this and suddenly started to notice it everywhere.

I was honored to witness this at a party this weekend, where the host couple had friends from all stages of their lives. I got to watch my three-year-old son at parties with his friends from school, where their comfortable and fluid interactions show how deeply they already know each other. And I marveled as my friend from third grade, who recently returned home after a one-month visit (along with her husband and two daughters - how amazing is that!), randomly recalled shared experiences that are like gold.

I'm grateful for all these friendships and the memories those friends hold, events that I either don't recall or that reside in the dark, dusty corners of my mind and heart. Those are places I don't typically explore without a professional. It's way more fun with a friend.

Thank you for all the memories you hold, even as you might recall one right now! And I hope that, soon or during this summer, you can spontaneously go to some dark dusty spot in your heart with a friend, find a treasure and smile, and barrel ahead to create new memories!

Thank you for all the prayers and good wishes, and keep them coming!

Love to you,
Marie

Not great week morphs into something better

The good news is that I made it to see Aidan's play! It was so fun to watch all the kids, and Aidan did a great job. Thank you for your support there.

All is well now, but, last week was really pretty uncomfortable. I had my normal "not so fun" post-chemo days, but I was at least up and around.

I usually count on having a "chemo week," which I accept as unpredictable, followed by a "normal" week where I can recharge. But the bad days were stretching into my "normal" week -- no fair! I had severe abdominal pain and was truly unable to move for hours and then days on end, culminating with going to the ER mid-week. I really admire people who can withstand pain. I like to think I have a high threshold for pain, but at some point, physical pain really brings me to my knees.

The ER folks were fantastic. The IV nurse actually noticed that I might need rest more than an IV at that moment and left me alone. I got an x-ray -- no problems, and how handy to have Tiron (my radiologist husband) in the room to read it immediately. I started to feel better and better -- it must have started to clear itself up at that point. I decided to refuse the blood tests and the CT scan because they didn't seem to be necessary. And though the doctors wanted to keep me overnight for observation, they did let me go home instead. Yay!

I realized that I was less than optimistic after hearing all the worst-case scenarios described to me in the ER (like, if you leave and your bowel is perforated, you could die). I loved that my PCP called me the next morning and said, "This could very likely be a one-time occurrence, and it's over." That kind of positive energy is so contagious, and very much needed. I went from dragging my feet to walking on a cloud.

Though I wasn't depressed anymore, I still felt a bit sorry for myself about my bad week. Then, I got into the car, and the soundtrack for Jesus Christ Superstar came on. As the story unfolded (of the seven days before the Crucifixion), I thought, Okay, THAT is a bad week.

So, not to be a downer, but speaking of bad weeks, I'm realizing at this point, I know so many people who are living with cancer. They go in for their treatments, they do what they need to do every day, they worry about the future, they live in the present. In the grocery store or walking down the street, a casual observer would not realize they are struggling in ways different than anyone else. I always pictured cancer patients to be skinny, bald, on oxygen, or in wheelchairs. But that isn't always true, fortunately. They pretty much look like everyone else. And it makes me wonder what everyone is struggling with -- that woman I pass on the street who seems to have it all together, the man who waits a little too long when the traffic light turns green. But it doesn't make sense to focus too much on it, because they aren't focused on it at that moment either. There is so much more to life.

Not only are they living, they are living in ways that their doctors would never have predicted and maybe have never seen before. For several of them (and I hope, all of them), their cancers are shrinking and disappearing. And that gives me hope, too.

I want to share two disconnected stories with you. One night, we had dinner with a couple of musicians, one of whom pointed out that our very loud little boys have resonance. I didn't know what that was, so he described it roughly like this: Their bone structure amplifies the sounds they make, making their voices ideal for projecting in singing and theater. What a fun way to look at something that I previously felt was just, well, loud! I also realized that it would be an uphill battle to focus on quieting them down (even though I still try!) and maybe I should spend more energy helping to channel this rather than fight it.

The other is....I have been trying to say "yes" more often to the kids. Sometimes, I say yes when I should have said no and screw up royally. But, the other night, when my three-year-old asked for a popsicle before dinner and I said, "Yes," he enthusiastically responded, "I LOVE yes!"

I hope you get lots of yeses to things that bring you joy today and always. Tomorrow (Tuesday) is chemo, so do send your healing prayers if you can for good energy and for any cancer cells to disappear, for me and for all those living with problems that may be out of their control.

Love, Marie

First chemo session, again

Chemo happened yesterday. I thought I would be pleased to get this underway, but mostly, I feel bummed out.

The folks at MGH are really really nice, and I feel very cared for. It amazes me how "normal" many cancer patients look. If they weren't waiting for a doctor or hooked up to an IV, I would never know that most of them are patients. Of course, there are always patients who arrive in wheelchairs or on stretchers, and I say a little prayer for them, and give heartfelt thanks that I am not in that position.

Your prayers were again so effective: The doctors decided on a chemo and we all felt the plan was reasonable. Thank you for your prayers for that. That conversation was less stressful than I expected! Sometimes they provide info and we need to make the decision on the spot: It is really hard to make those kinds of decisions in the moment, and having them think it through in advance makes it much easier.

This chemo regimen is different than my last. Thankfully, because that last one didn't do the trick! This one is called FOLFORI (pronounced Fol-fury) and typically the first-line drug used in Europe. I kind of like that. They added one other drug to the mix, but I've pushed that name out of my brain, trying to pretend that I am a normal person and not really taking chemo.

They are still waiting for some genetic testing results on my tumor, and once those return, we will add another drug to the regimen. So I guess I started out with "chem lite."

Marilyn, Tiron and I headed to the infusion unit, where I got hooked up to an IV pole and the stuff drips into my veins over about two hours. It is freaky that so many people there remembered me. And I got my old nurse! I was thrilled with that.

This process involves alot of waiting, and the waiting is really hard for me. I feel like, if my time is limited, I don't want to spend it waiting for nothing. But, wait you do. My doctor took two hours before she got around to writing the chemo prescription. Next time, I'll ask her to do it while I am in her office. I forgot that little trick.

We got seats with a fantastic view of Boston, and were apparently the envy of some other patients. One guy complained to his nurse that he didn't have a better seat. Strange to have envy enter that kind of situation, but human nature is everywhere. Or, as my friend the hospice nurse says, "The closer people get to death, the more of their true selves come out."

The chemo was hard on my body, so they had to give me other drugs to counteract that. I watched half of Julie and Julia, which was nice and relaxing and soothing in a weird way. And then it was all done.

I got hooked up to my continuous infusion pump to wear home. This enables me to go home and keep getting chemo while I go about my day. If you see me on some Wednesdays and Thursday mornings, you will see me carrying a bag and perhaps you will hear the whirring of the pump. I try to remain grateful for this invention that lets me go home, rather than spend two days in the hospital, but I have to say, I truly resent it. It gets removed on Thursday, I get a shot on Friday to bump up my white cell count, and the cycle starts again in two weeks.

How many sessions? The bummer is that, this is for the foreseeable future. So, I can't do a count down. The doctor said that the chemo would need to get rid of ALL the cancer cells. She also said it is unlikely to do that. I think of it like killing cockroaches: It just takes one to get that whole colony up and running again. I try to view this like I have a chronic condition, but my head isn't quite there yet.

The good news is, they are willing to run these treatments around the rest of my life. So I can skip sessions to travel, for example, which I couldn't do before.

I'm excited about this, because I think that will help the quality of our family life. I'm also really excited because I want to go to the Hippocrates Health Institute in Florida, and this will enable me to take time off to do that.

The kids have been fantastic. Not that they haven't been scared or worried, but they are really rallying when we need them to. and Tiron is keeping all my medical records straight, when all I want to do is toss them in the trash.

Please keep your prayers coming! I will take any prayers, but someone advised me to be specific, so here it is:
That the chemo kills the cancer cells and is tolerable.
That the boys (including Tiron) grow in inner strength and cheer.

Much love to all of you.
Marie

Healing well and chemo soon

Thank you for all your prayers and good thoughts. I am healing amazingly well from my most recent surgery, and I got the staples removed today. Yay! I even walked to Harvard Square and back, a total distance of about 2 miles.

The good news is that they got all the "big" tumor out, with clean margins. Whew. The not great news is that there are more tumor cells in there. Some are attached, some are floating around.

Which means.....next up is chemo.

It was clear that I would need to do chemo anyway, but I was kind of hoping that there would be no sign of disease remaining. Oh well.

So.....given how powerful all your prayers and good intentions were for the surgery, I wonder if I can ask you for another round?The doctors need to decide which chemo to use. There are a few options, and I would love it if they picked the right one the first time around. (Obviously, the chemo I did two years ago didn't quite do the trick!)

Thank you for your prayers and good intentions on our behalf!!!! You can be sure that I am sending good vibes back to you.

With love,
Marie

Chemo 9 of 12: Did I get the right chemo?

This was definitely the most difficult chemo treatment so far.

For those of you who told me that they are having a hard time listening to all this, you might want to skip this message.

If you are still here, cool. And thank you. I think my theme song of the week is I'm Still Standing by Elton John. Lyrics are at the end of this for those of you who do not know the song. I put the words in bold that keep going through my head.

There are three ways that I look at the past week:

The Power of Vision
Early on, I think I told you that my vision of chemo was that you walk cheerily into chemo, you get chemo, you get violently ill, then you get wheeled out, hunched over in a wheelchair. Then you feel sick for days on end.

Well, visions are powerful. That was my experience this week.

Maybe I've just been lucky that it took so long before I got this ill from chemo. But wow. And yuck.

The Power of Tears
Here is another angle. I went into chemo just needing to have a good cry. But there never seemed to be a good time to do that. First I was busy getting my vital signs taken and blood tests done, moving from one place to another for those. Then I met with the doctors. While I did tell them that I felt sad, it just didn't seem like the right time to break down in tears. I wanted to have a good, long, cry, and the appointments are kind of time-limited.

So, I figured that I would just have my time during chemo. But, that didn't happen for a number of reasons. Not that I wasn't encouraged. Mary, who was visiting me, kept insisting that I revisit how I was feeling, not to ignore it. But I kept pushing her off. And Eleanor, my friend the therapist, of course, agreed, but, again, I wouldn't really have any of it.

Now, if the floodgates are going to burst, and you don't give them an outlet, they burst through a million other ways. In my case, immediately after I finished chemo, I got sick. Every five minutes. Non-stop. Ugh. First time that happened. So maybe it was all that emotion trying to get out.

Thank you to Barbara, who continued to offer to drive me home between my runs to the bathroom. And a second thank you to her for calling Tiron to come and get me instead!

The Power of Chemo
This session's reaction was wildly unusual for me. AND, neuropathy is a known and expected side effect of the drugs I am on. In fact, it is cumulative, meaning that it is expected to get worse with each treatment. And, mine has. Until now. This time, I had little to no neuropathy. I can stick my hand in a freezer and it feels cold but not painful. I can scoop out handfuls of ice cubes and only feel the cold, no pain. Further, I'm having no fatigue.

The lack of side effects was the most worrisome part for the doctors and nurses. So, we spent a bit of time doing more blood tests and calling the drug company, checking to see whether I got the right chemo. While the results aren't definitive, it appears that I probably got the right chemo but just have a weird set of side effects this time. The drug company admits that they have never heard of these reactions to my particular regimen. Sigh. Always an adventure. Makes it a bit scary to go in next time, for sure. I didn't realize before this how much trust is involved in the whole process.

So, it is one of those three things, maybe a combination, maybe none of the above.

I ran across this quote this week, from the webpage of Dr. Michele Reiss:
Life isn't about waiting for the storm to pass; it's about learning to dance in the rain.

I'm definitely still learning, because frankly, I realize that I'm mostly waiting for the storm to pass! Thanks for hanging in there with me, and for bringing me provisions! :-)

Love, Marie


I'm Still Standing
by Elton John& Bernie Taupin

You could never know what it's like
Your blood like winter freezes just like ice
And there's a cold lonely light that shines from you
You'll wind up like the wreck you hide behind that mask you use

And did you think this fool could never win
Well look at me, I'm coming back again
I got a taste of love in a simple way
And if you need to know while I'm still standing you just fade away

Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind

I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah

Once I never could hope to win
You starting down the road leaving me again
The threats you made were meant to cut me down
And if our love was just a circus you'd be a clown by now

Chemo Spill Kit

No one but me seemed to notice this box in the infusion room. It just felt so foreboding. Two days later when I returned, it was in the same place, but open, with the contents spread on the counter. The nurse said, "oh, one of the patients took a photo of that two days ago." hmmmm, that was me!

Chemo 8 of 12: Opening to Grace

If you are still reading these, thanks for hanging in there with me!

Well, the world shifted last week when Avi passed away. There's not alot I can say about that, except maybe that some people, when they leave, leave a hole the size of the Grand Canyon, and I feel hugely fortunate that I got to know him at all.

Even knowing this, I approached the infusion room the way I always did on Tuesdays, peeking around into the waiting room and hoping that he and Barbara were there so that we could visit. Yikes.

Still, the routine was the same old thing, and there is some reassurance in that. My blood numbers were good (yay!). Even my iron levels are approaching normal. And the side effects are currently as expected (the usual visitors -- mild nausea, neuropathy, some unprintable stuff but not bad). I got a primo view of Boston from my chair, a friend came to visit and brought lunch.

After she left, a married couple bopped into the chemo space next to me. I was playing my usual game of "which one is the patient" in my mind -- they were both pretty upbeat and fun. What a weird and funky reality, socializing in that environment. I guess it is kind of like acupuncture. In acupuncture, they stick needles into you, then tell you to relax. It sounds impossible, but once the needles are in, there is really nothing to do but relax, so you do it, even though you are physically restricted. So maybe getting chemo is like that. You have to sit still and get this medicine, and you find a way to be in your new reality. So, we are who we are, and we socialize.

I have a new oncologist (who was one of Avi's doctors, too), and it turns out that she and I have alot in common. I keep feeling like cancer is so isolating; last week, I noticed a book called The Lonely Patient, written by a doctor about a cancer patient. It tells how doctors keep patients at bay, don't really want to know their patients' feelings or how they are truly doing, and how patients sense this and try to protect doctors by sharing only physical details of their illness and not sharing how they are really feeling, and how this can add to the isolation.

So, when my new oncologist asked, "How are you?" I decided to take the plunge and tell her. I recognized that she may not really respond to the opening, and that was okay. But I told her how my four-year-old son made an IV pole with a line attached, hooked it into a toy tiger's chest, and told me that the tiger was getting chemo. Bubble gum fruit-flavored chemo, to be exact. Then he asked if he could take a photo of me so that he could always remember me, and how that just broke my heart. She responded to all that, and that was nice, and I learned alot about her in the process. Like, we both have adopted four-year-olds!

Someone asked what I am learning through all this. To be honest, I have not a clue. If I am supposed to be learning something, I hope I do get it, because I don't want to repeat this class. Maybe I need it to have it written on the sky, or, most likely, in words on a PowerPoint slide. Maybe sent in e-mail.

The closest I can come is this: This kind of thing strips you of so much, and leaves you open and raw. And during this time, for me, compassion arises. Now, I really admire people who can be compassionate in their day-to-day life, and I wish I could be like that. But my life looks something like this. Let's take a normal scene: Grocery shopping and my internal dialogue.

Last year, before diagnosis: "Why is everyone moving so slowly????? Can't they get out of my way!"
After diagnosis, but before chemo: "I don't have time for this!!! Move faster! Can't you see that time is fleeting?"
After starting treatment: "I wonder what they are going through? How can I help them?"
After getting used to being in treatment: "Why is everyone moving so slowly????? Can't they get out of my way!"

Of course, in all my rushing, if I ran into a friend, I would happily stop and chat for 30 minutes. Go figure.

Anyway, if compassion was supposed to be the lesson, I am slipping back to my old evil ways. I did like myself better in my compassionate phase. It would be nice if I could generate that without having my insides ripped out.

The other huge thing is that I continue to be amazed by the generosity of others. I feel so lucky to know people who are further along on this journey than I am, and still take the time to help me out. And I truly appreciate that people have SO MUCH going on in their lives, and still take the time to help and to reach out.

It feels like we are all part of this huge web, and by holding together, we all hold each other up. And I'm starting to really appreciate that. Thank you for your help in getting me there.

Four more remaining.

Love, Marie

Chemo Tiger

While I was out, my four-year-old created Chemo Tiger. The orange and yellow part is the IV pole, and there is a fine plastic wire that connects to the yellow thing that is stuck into the tiger's neck.

I hate that my child knows so much about chemo.

It gets better: My son took this photo "so that he would always remember me." Yikes.

On the bright side, it is encouraging that he chose a tiger!

Chemo 7 of 12: Back to chemo after a break in the routine

Thank you to everyone for all your support, in so many ways, through this journey. I know it must feel like it has been going on forever, and my husband, the kids and I all appreciate your hanging in there with us.

I was able to get chemo this week, and I'm now more than halfway through. Yay! It was nice to have the break from chemo for awhile. I was beginning to feel human again, and I almost forgot what this routine was all like. But now I'm back in the game and wearing my continuous infusion pump. Thankfully, the side effects are not bad this round.

I really appreciate the visits from friends, and apologize to those of you who were there on Tuesday in the infusion room with me -- I got a bit tired in the middle and may have taken a little mental vacation from time to time. But it was nice to chat and have the visit.

The overwhelming piece this time was that Avi was admitted to the hospital that day. Avi is our dear friend, and we got to visit at the hospital on chemo days, because we both seemed to be there on the same days, getting (or, trying to get) chemo. His treatment was not working so well lately, and our emotions were more there, with him in his hospital room.

Spring is starting to arrive here in Boston and I hope that it helps to bring better things for all of us. In the meantime, it is an important reminder to enjoy each day. Thank you so much for being part of ours.

Love, Marie

Chemo Five of SIX: Blood counts coming up, beginning to think about radiation

I finally got the schedule for the rest of my chemo, and on Tuesday, had number five of six. So I am almost through the first part of this treatment!!!!

The past two weeks have been relatively non-eventful, though I did learn a few things.

The first that comes to mind: I got my regular injection to increase my white cell production. I usually have a particular nurse who does reiki before, during and after the injection, so it never felt like a big deal to get the shot.

This time, she was out, so I got the nearest available nurse. Wow. Not only did the injection hurt like heck, but I let out with a string of swear words that I don't think I've ever used all in a row, then burst into tears. So, thank goodness for reiki and, I am learning that while I am living with so much uncertainty, it helps me to have consistent caregivers.

Now that my doctor will be going on maternity leave, I will be assigned to another doctor. Learning that I need consistent caregivers, we opted to keep my current chemo day. This way, I would have the same nursing staff, scheduling person, etc. We'll figure out what doctor is available on that day. The other good news is that the resident who I adored at Dana Farber is now a Fellow at MGH, so I will have him on my team as well. Ya-Hoo! Someone is really watching out for me.

I seem to be tolerating the treatments well. My white cells were in a good place this time, and, thanks to the seaweed soup, the bone marrow soup, the somewhat consistent iron pills (I don't always take them -- oops), cream of wheat, lamb, cooking in cast iron, acupuncture and a little bit of magic...I now have what seems to be a relatively normal set of red cells. Whew. My nausea is mostly the kind of nausea that makes you feel like you should put a little something in your stomach, so I'm eating constantly and steadily gaining weight.

This chemo visit was a bit funky but kind of fun (in a weird way). My schedule got all balled up, so I was there all day. But I got to visit with other friends who were there as patients, and a few friends dropped by here and there, as well as my husband. I learned about a fabulous knitting book, and I almost finished knitting my scarf for my four-year-old son.

It did occur to me that all of us chemo patients spend alot of time just waiting. Isn't it ironic that, for people who I am sure have contemplated the precious commodity of time, we are forced to sit and do nothing with it! I've chosen to look at it as an investment -- this full day in the hospital buys more time on the other end. But still, ironic. And a bit annoying.

Next up is radiation. Here is what I know so far about that:
-- It kind of scares me (which means I need to learn more).
-- Because my cancer was right on the line between colon and rectal (lovely), it is my choice whether or not to have it. All advice points to having it, so I am going down that road.
-- It is five days a week for 5.5 weeks, and I will wear my continuous chemo pump during those five days, every week. I really resent having this pump, but I've got to find a way to make peace with that or I will make myself crazy. Someone at my acupuncturist office told me to think of it as a friend that is mildly annoying. I don't really have any of those, so I'll have to conjure something up. Any ideas are welcome.

I meet with the radiologist on Monday to learn more, so if you know of any questions I should ask him, send those along.

Finally, the kids seem to be doing okay with all this. I am away alot, and the more I am away, the more they seem to cling to me. Between the doctor appointments, acupuncture, nutritionist, yoga, phone calls to schedule appointments, and also needing some time alone and with friends (haven't figured out how to get exercise in there, too), I think I would see them more if I had a fulltime job.

It helps that folks have provided great playdates (thank you!) and we've found some wonderful babysitters along the way.

There was a time period where I was so raw that I was wide open. And during that time, it is almost as if grace had a chance to enter. The gifts and suggestions that I was open to during that time have all been wonderful additions to my life. Life has now kind of assumed a new normal, so I am no longer in that place, and while I wish I could generate that kind of openness in myself, I am always grateful for ever having it at all, and for all the gifts it brought.

Thank you for all the meals, playdates, suggestions, good wishes, prayers and friendship. This feels like such a long road, and I am so thankful for your company.

Love, Marie

Chemo begins tomorrow

Hi everyone,

I want to thank you for being part of the healing circle on Friday,
whether you were there in person or in spirit. I can't begin to
describe how powerful or how meaningful it was and is to me. I can
still feel the vibes, and I am packing my "chemo bag" tomorrow, and
you will all be with me there.

Thank you so much for all of that.

If you are so inspired tomorrow -- I will be at MGH from 10:30 until
who knows when, but probably until at least 5:00. Chemo is supposed
to start at 1:00, and run for 3+ hours. Anytime in there, if you
think of me, send a few positive, healing vibes toward me!!!

I feel so blessed to have you in my life.

Love, Marie

Cancer spread to lymph nodes

Hi guys,

Thanks so much for your note and support. I'm writing to you because it seems to help, and I'm actually quite bummed right now, probably the most bummed I've been this whole journey.

It looks like the cancer was found in one of the lymph nodes. The good news is that it is only one. The bad news is that it spread, which means chemo and radiation. I'm still sorting through doctor phone calls and names.

Well, I thought I wanted to write, but I don't know what else to say.
Marie