Chemo on hold!

Thank you so much for your support, your positive thoughts and your prayers. I feel like you have really carried me along this path.

I'm kind of stunned to share this good news and almost don't believe it. Last week, I had a PET CT and got the results on Tuesday -- there is no evidence of disease. There is a small amount of activity on the PET but nothing on the CT.

It is kind of weird to be in this position, in a good way.

We talked with the doctor about options: Continuing chemo, modifying my chemo regimen, and taking a break (I like to think of it as quitting altogether) were among the choices, and I chose Door #3 (ha ha) -- I decided to stop chemo. They will monitor my blood levels in a month, and I get another PET CT in two months. 

So that means, two months with no chemo. Since I have chemo every other week, that is four whole weeks that I regain in my life.

I'm relieved in so many ways, but mostly, I truly can't believe and process my test results. It really does feel like a miracle.

So, I'm trying to keep a steady breath, and remain really thankful and really hopeful. I'm not looking too far into the future, but for me, two months is long-term planning anyway. This whole thing really does force one to be in the moment.

In the meantime, my goal is to regain my strength and continue anything healthy. Thank you for ALL you have done to help get to this point.

If you want to read further, I'll share the story of the PET CT:

I went in for my PET CT on Tuesday of last week. In this test, they inject a radioactive substance into your veins. In the past, Nurse Barbara would insist she could stick me, and stick me she would -- a few times, always unsuccessfully, before then getting Nurse Virginia, who actually could access a vein. 

This time, Angel Chemo Nurse Julie suggested that I use my power port (a device implanted in my chest). Why no one suggested that before, who knows? Anyway, Nurse Julie accessed the port just before my test and I made my way to the PET CT area of the hospital. It was funky to walk outside with tubes hanging out of my chest, but not bad.

When I walked into the nurses' office there, Nurse Barbara's face fell. I immediately told her -- I'm already accessed! I swear, she cheered. (She's truly a nice person when she isn't poking me with needles.)

I got the injection, drank the drink, and then laid on the table for the (20? 40? minute) test. After the test, I got a whole new nurse - Let's call her "Nurse Unnamed" -- whose job was to disconnect the needle from my chest.

Nurse Unnamed insisted on two separate ways of confirming that I had a power port in my chest. I tried to tell her that I had it placed at this hospital, she could look in the system. She did, but wanted more verification. 

Now, for anyone who doesn't know, I can actually remove the needle from the port myself, at home. I even did it once! That basically demonstrates that it isn't complicated. But she kept refusing to disconnect me. She finally left me alone, I assume to see if she could figure out an alternative she was comfortable with.

While she was gone, I looked down at my body. I generally don't have body issues. I never thought I was too thin or too fat, never had issues with my boobs or butt, mostly felt like my body, and everyone else's, seemed to be just fine. Even with all my surgeries, I still didn't really dislike my body.

But right then, I was noticing my body in a new way. Because I can't wear my bra for the test, I didn't have my prosthesis on. I could see my ostomy bag and my port. So, some parts missing, and some parts added. I saw my scars from my surgeries: my mastectomy, my hernia surgery, my initial colon resection, the removal of a tumor from two summers ago, the original ostomy placement, the closed holes where the tubes were, the vertical scar on my belly from my most recent surgery. Typically, I think of them as a road map of my life. Right now, though, there just seemed to be an awful lot of them.

When did my body get like this? How did it get to this point? I was suddenly tired of everyone accessing my body in so many different ways, through cuts and needles and everything else I've done just to stay alive over the past five years. Sitting in that hospital room, along with so many others who were in chairs, on beds and in wheelchairs, waiting for treatment, I felt like a victim. And I hated it.

I decided that I needed to take back some power. So, I looked at my options. I could remove this myself. Or I could return to the infusion unit and ask them to remove it. Nurse Unnamed did not have to do something that she made her uncomfortable, and I would not be at her mercy.

Ironically, once I acted like I had options, she decided to go ahead and do it. Out of all the stressful elements of the test, I didn't expect the disconnect to be the most hassle. But it was manageable. 

So hopefully, I can remember that, even in situations that don't feel great, there are options, and I have choices. Right now, I'm happy to have the choice to take a "chemo holiday" and hope it is a good, long one. Thank you again for all you have done to help me get to now, and for always believing that this is possible. That belief really expands my world.

Have a most excellent day.

Much love to you,
Marie

Visit to Dana Farber

If you wrote to me last time around, please know that I read and appreciated every single email. It really lifts me up. The last round of chemo knocked me down hard and I couldn't answer emails or write anything. And then, when I started feeling better again, the kids started school vacation and it was like being on a moving train -- I just couldn't jump off. Plus, it was kind of fun to pretend for awhile that I wasn't a patient.

I took an extra week off chemo during the holiday. I cannot believe how good I feel from just one more week off! I feel like I have more patience (though my husband disagrees, but whatever, I feel good). I got to visit family, go skiing with the kids, take the dog out for walks. It was great!

And, I was able to consult with another oncologist, this time at Dana Farber Cancer Institute. I had spoken to my regular oncologist about options for treatments -- should I continue on this every two week cycle? Should I stretch it to every three weeks since my numbers are good? Should I take a "chemo holiday" to let my body recover from all the chemo? What are the risks and benefits from any of these paths?

I always think that another smart mind is helpful, plus I'm interested in working with someone who views cancer more as a chronic condition than a fatal illness. So, I was lucky to be able to pull some strings (thanks, Julie!) and see Julie's oncologist at Dana Farber.

Dana Farber is a sobering place from the moment you pull up. I see weathered women in wheelchairs and on oxygen and cannot help but wonder if that will be me. I see children going in for treatments, and my heart breaks into a million pieces. And, while I like to deny it, I have to face the truth that I am part of this group.

Every single worker I encountered at DFCI is unfailingly nice and helpful. The valet patiently explained how their system works. It's no different than any other system, but he still explained it nicely and didn't treat us like we were idiots.  The woman who checked me in didn't even imply that I was incompetent for forgetting my Dana Farber card; she simply smiled nicely and handed a new one to me. The person taking my vital signs was upbeat without being annoying. 

The waiting rooms are PACKED. I guess that says something about cancer in our society. Still, the other patients were nice, and some of them were chatty. The Pittsburgher in me enjoyed that. 

The doctor (we'll call him Jay) was running late, but I was glad to see him. He reviewed all my written records on-line through the inter-hospital system, and my rock-star radiologist husband had all my radiology studies organized on disks so that Jay could view them. Given the detail Jay recited about my case, I have to assume that my own oncologist keeps fantastic and detailed notes. 

I forgot to ask my oncologist for my CEA number last week (the blood number that I track to get some indication of how the treatments are working). So, I said to Jay, "I think that my numbers look pretty good. Do you want to look at the trend?"

Then, while he was accessing the trends, looking at the screen, he said, "Your CEA looks good at 1.6." 

Now, I never saw his eyes move from the screen, and I tried to keep a poker face, but he was paying close enough attention to my body language to then say, "You didn't know that, did you?"

I was very impressed.

Jay asked questions about how I am handling the current chemo treatments, both physically and emotionally, and did a quick physical exam. Then we had a conversation.

Jay was direct with me, and optimistic without sugarcoating things. He can talk in decision tress, which is how I think, so communication felt easy. Here is the basic bottom line, as he described it, or at least, how I heard it:

"Blood numbers look good, so it is possible, unlikely but anything is possible, so it is possible that all the cancer cells are gone. (BTW, I LOVED that he entertained that possibility at all. Loved it.) If that is the case, you are doing chemo needlessly.

Or, there could be some cancer cells in there that we can't see, hiding out. If so, you could continue to do chemo and try to knock those out.

Or you can take a break, let your body recover from chemo, and we could monitor you every two months. There were two studies done, basically showing that longevity is not impacted by a break like this, and overall quality of life is better.

Or, you could spread out the treatments to every three weeks, but I wouldn't recommend that, because we don't know if that is as effective as every two weeks (my current regimen). So you might get all the side effects of chemo with questionable benefit."

He did mention that I should get PET CTs more often than I am, and I take total blame for that. My oncologist also recommends them more frequently, but I have no more accessible veins in my arm and only have one or two accessible veins in my hand, so I'm very protective of those. Plus I hate getting all the radiation from that test.

So, here is my plan:

I will do chemo this week. 

I will schedule a PET CT asap

Then, based on the results, take it from there.

Wish me luck! And a good chemo week. And most if all, thank you for hanging in there with me.

Two other quick notes. 

1. Here is an article I wrote about treating cancer as a chronic condition:

http://commonhealth.wbur.org/2011/01/chemotherapy-for-life/

Feel free to write comments there, even under a pseudonym or anonymously. It helps the owners of this blog, and it is interesting to me to read them as well. :-)

2. I'll close with this story: Last weekend, Tiron really wanted to have our caricatures done by this one artist guy. We don't know him at all (other than his work) and he knows nothing about my health. 

On the drawing, above my head, he wrote, "Don't Stop Believing." I know that it is from Journey, but I took it to heart.

Thank you for continuing to believe.

Love, Marie

It was a good chemo week!

Thank you for all your emails, well wishes and prayers. I completely SAILED through the last chemo, physically. I have to admit that, while I am usually fairly upbeat, the past three weeks had me totally down in the dumps. It felt like there was sad news and endings everywhere I turned, and I kept relating all of it to me. 

Some of the endings are cancer-related: A friend of a friend has been amazing at supporting me by being open about her path of living on chemo. I learned that she is no longer doing chemo, and not because she is miraculously cured. Though I've never met her personally, she really has been a rock for me through all of this. 

Then, of course, there is Elizabeth Edwards. I felt that, if she could live forever, then I could, too. But then, she died. Guess I set myself for disappointment there.

I've been having really disturbing dreams about dying.

Even the songs on the radio seemed to reflect cancer and loss. I swear that every time I turned on the radio, I heard this Christmas song about a little boy trying to buy shoes for his dying mother who might not make it to Christmas Day. Gut wrenching sobs. Ugh.

As if those weren't enough, the yoga studio I attend is closing. On the surface, this doesn't sound like a big deal. I attend a weekly class, and lately, I've only been attending every other week. That computes to twice a month. Not often.

It's a small studio; I never counted the students, but there were maybe 18 max in each class. I first met Joseph, the teacher, during a time in my life when I really needed to laugh. You wouldn't think that one would find laughter in a yoga class, but I laughed through my entire first class with him, and the laughter pulled me back to the class again and again. 

Many of the students were regulars, and despite my nine years there, I knew few of their last names or what they do outside of yoga. But when I got the message about the studio closing, my stomach sank. I realize that we've formed a community. I would miss Joseph and the entire community. I had no idea how important and strong this thread was in my life.

I was so tired of everything feeling like it was going away. And I was tired of feeling sad. Yes, I know, endings can make way for new beginnings. Sometimes it is hard to really believe that.

Still, we all go about each day, doing our thing, and I suddenly noticed that it was more important to me, personally, to support the decision of my instructor than to be sad about it. And, surprise: It felt better, too, like I was lifting my head up again, and able to look outside myself.

I have no clue what the future holds. I hope it holds more surprises like this, elements that light the way of how to feel better.

I suppose that our yoga community will stay in touch, at least for a time. I suspect that it will morph, as we all change and grow, but we are truly part of each other in ways I never knew, and it is nice to actually be aware of that. 

I'm taking small steps forward. I'm setting up a yoga room in my house, or, more accurately, asking my father to do that while he visits this week. I've stopped listening to the radio for awhile. And I'm going to Dana Farber to get a different perspective on my health situation.

The laughter - well, some things are just so life-affirming, and laughter is one of them. That will have to stay. 

I hope you can find real joy today, that makes you smile so big that you have to laugh, that something tickles you in such a way that you see the humor in it, and that you can feel the light shine right through you.

Chemo again today -- I'm writing this from my chair! Your prayers and good wishes are always welcome and help to make this all okay.

Love,
Marie

Managing cancer and going for world peace, one step at a time

Thank you for your thoughts and prayers, your good will and your support, for me and for my family. Besides the huge impact on me and my health, I know that it helps Tiron immensely, and the kids as well. For them, as for all of us, the stress pops up during what often seems like unlikely moments, and we appreciate how you are handling it along with us. Thank you.

It might seem like your efforts are small, they are huge for us. I was reminded of this during a recent talk with my doctor. People comment that I am managing cancer as a "chronic disease" (as opposed to a fatal diagnosis), and I like that mindset. Though I still hope to get rid of this cancer, if I can't, well, I'd like to LIVE with it.

As I thought about this mindset, I started noticing more and more subtleties. For example, my doctor would say, "When this chemo stops working...." when I would prefer to hear, "IF this chemo stops working...." That one word difference can send my emotions diving to the bottom, and after our conversation, I was left alone to stand up, brush myself off, and somehow climb out of the hole I was in.

This kind of knock-down was not exclusive to my doctor. It happens, for example, when someone honks their car horn: I happily drive along, feeling the breeze from the open car window and singing away, then that horn blast goes right through me, shattering the good will into shards flying out the window. 

I do it to others as well, like when I come down too hard on the kids for a relatively minor infraction and watch the change in their eyes. Or when someone is blocking my way and I say "excuse me" with a bit of edge in my voice. Though unintentional, the other person ends up absorbing my ill will, where it either does some damage to them, or it affects their mood and they pass the ill will along to someone else.

If we can pass along negative feelings with small thoughts and actions, we can certainly pass along positive ones, and we feel that impact when you share yours. They may seem to be small, but they are powerful, and hopefully we are passing those good feelings along to others. 

So, thank you, for all you do for our lives, and also for the feelings of peace and good will that you are sending out to the world as a result.

Chemo day for me -- keep those good thoughts and prayers coming! :-)

Love,

Marie

P.S. Some folks wanted to know about prior emails. If you want to check them out (no pressure), look here:

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

Skipped last chemo; next one on WEDNESDAY

Thank you so much for all you have done to show your concern, always and especially during the past four weeks. I apologize for being out of touch, but do appreciate all the check-ins.

I also want you to know how much I appreciate your flexibility with me and my family. I feel like I am always asking for exceptions, making or canceling plans at the last minute, forgetting things that I should be expected to remember. I know you have been cutting me alot of slack for a long time. I hope it hasn't been too hard on you, and I truly believe that helps in reducing the stress in our lives and makes things so much easier to handle. We all really appreciate it, especially me.

Overall, I'm doing just great. I feel really good and my energy level feels normal. In fact, when I went through this a few years ago, I did six months of chemo and I was totally wiped out. So far, it has been nine months of chemo. I don't know if the mix is different, but I am grateful to have the quality of life that I have.

My most recent chemo, however, threw me for a loop. I was sick for eight days following it and couldn't even get on e-mail. Then, once I could get on email, my computer broke. So I am quite behind on that. 

By the time I felt better, my next chemo session was only days away and I didn't think my body was ready for another hit, so I skipped that session. That was a bit scary to me, and I wondered if I was giving any cancer cells time to grow. Plus, I got sick a couple of times during my off-weeks, but I have to say, the good days have all been great!

I would normally go in for chemo tomorrow, Tuesday, but Aidan has his second grade Harvest Feast at school on Tuesday night. It is a big deal for him, and I find it pretty exciting, so, for this week, I'll wait one more day and do chemo on Wednesday.

This decision has ripple effects. Two weeks from now is Thanksgiving. I wanted to have chemo on Monday that week in order to feel better by Thursday. But this week's Wednesday chemo means that Monday will be too soon afterwards (does that make sense?). So I will skip chemo again during Thanksgiving week. 

Alternatively, I could be wearing my infusion pump during Thanksgiving dinner -- I could dress it up for the photos. Maybe have feathers coming out of my chest? But the taste of chemo doesn't seem to complement turkey (or raw foods). Plus, the steroids I take make me short-tempered and crazy! Maybe skipping is a better plan. Everyone has been so great at putting up with me; I don't want to push it.

Skipping ALL of these would be truly lovely, though it doesn't feel like a viable choice right now. Please do think of us this week and send your prayers and positive thoughts, especially Wed - Friday. Thank you for hanging in there with us. We are so blessed that you are in our lives!

Love,
Marie

Good CEA number again -- whew

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

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

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

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

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

Back from Paris and Lourdes!

Thank you for hanging in there with me. I get concerned that this road is long and boring for you, and a bit self-conscious about all these e-mails, but really appreciate both your support and your presence in my life. Thank you.

My last chemo session went well, but the new blip on the scene was that something was literally growing out of my stomach. It is where I was opened from the surgery, and it looked like colon and was freaking me out. Some things are just meant to stay inside your body and remain unseen! Plus, we planned to leave for France in a few days (more on that later) and I was worried this could change those plans.

While all this was going on, Tiron got diverticulitus and had already scheduled an appointment to see my colorectal surgeon for that. So I muscled in on his appointment. We both saw her at the same time and got the two for one rate (two charges for one appointment). He got antibiotics, I got that thing burned off (yikes, but glad to have it taken care of), and we were good to go.

For the better part of the past year, I’ve been drawn to go to Lourdes. I’m not a Francophile, I am not a frequent traveler, and frankly, I’ve never felt a need to go to a religious site. So this was a surprising calling.

First the dog, which I never thought I would want but love, and now this.

The question was, how to get there. Between chemo, the kids’ schedules and needs, my funky diet, and the emotional hurdle of leaving the kids for the first time and going that far away, it just didn’t seem to be do-able. Still, I was drawn.

Have you heard the story of the woman in the flood? It goes something like this:

A flood was coming and the police drove by a woman standing on her porch.
“We are evacuating the town. Get in our car and we’ll drive you out,” they said to her.
“I’ll wait here and God will come for me,” she replied.

As the flood waters rose, a rowboat went by. The rowers said to her, “Everyone is evacuating. Get in our rowboat and we’ll keep you safe.”
“I’ll wait here and God will come for me,” she replied.

The flood waters rose higher and she sat on her roof. A helicopter flew over and the pilot said, “The town has evacuated. Get in the helicopter and we’ll get you out of here.”
“I’ll wait here and God will come for me,” she replied.

After she died in the flood, she asked God, “Why didn’t you come for me?”
To which He replied, “I sent a car, a boat and a helicopter. Why didn’t you take them?”

One of my favorite things is when God works through people, and I feel like that is what happened here. Our dear friends invited us to their apartment in Paris. Coincidentally, it was during a week that worked well for us, both kid- and chemo-wise, and we decided to go! There was no way we could have done it without them (and my parents to watch the kids), and I truly feel like God was working through Julie. Thank goodness she let him!

So, after the chemo and surgery appointments, we flew to Paris. It was my first time there. Paris is wonderful, of course. We did all the things I love to do: visit with friends, wander the streets of a beautiful, vibrant city, shop for food and cook. Well, I didn’t cook, since I eat mostly raw, but we ate our meals at the apartment in order to accommodate four different diets. So I was able to mostly stick to my diet. The baguettes and cheese are impossible to resist!

Then Tiron and I headed to Lourdes.

For you non-Catholics, Lourdes is a pilgrimage site. Think, Mecca. I never in my life thought I would be doing a pilgrimage, but then, life is full of surprises, especially these days.

I met some wonderful people. Father Brian (pronounced Bree-un) and Father Patrick, both from Ireland, shared jokes and stories with soul. Anne and Claire from Scotland were like two angels who appeared out of nowhere and guided me on my journey. Plus, they told me they thought I was in my 30’s – loved that! Or maybe I just didn’t understand their Scottish accent…Little Monica (age 5 ½ -- she insists on the “1/2”) from Rochester was so joyful and fun, skipping as we retraced the difficult steps of life of St. Bernadette.

The place itself is incredibly large. There were over 25,000 people there and it didn’t feel crowded. In two days, I only saw a portion of it. There were two cathedrals and numerous chapels, the Grotto area, the baths, a bookstore, museum, information booth, and much more. Except for the bookstore items and candles, everything was free.

I have no idea how this place operates and pays to keep the lights on. It was clean without constant street sweepers, had no graffiti, and, despite being so welcoming and open 24/7, had no homeless people sleeping on the benches or police patrolling the streets.

It felt calm and peaceful, interesting and reverent. And, like many places that touch the soul, difficult to describe.

People go to Lourdes for miracles. I’m not sure whether I got a miracle, but I don’t feel like I was there looking for one (though, I would not turn away a healing miracle, in case anyone is listening!). I just felt like I had to be there. Anne and Claire from Scotland said that it appears I was “invited by Our Lady” and that felt right – that I was invited there and just had to go. The pull was so strong. The reason may not be clear to me, but that is okay. I did what I had to do, and I hope I did it well.

It is clear to me that I couldn’t have done it alone. I appreciate your prayers and good wishes, which give me energy and keep me going. I appreciate all that you did to take care of the kids (those of you who are local) – thank you for that. They had a great week and felt loved and secure.

Thank you for all that you continue to do for all of us, and thank you for sharing all this with me. One of the Stations of the Cross depicts Simon of Cyrene helping Jesus carry the cross, and making me think of the ways that others help us carry our burdens. You truly do that. This path would be entirely different and way more difficult without you. You make a difference in our lives.

Chemo on Tuesday….

Love, Marie

P.S. If you are interested in the stories from my experiences at Lourdes, I will be posting them on
http://adventures-in-colon-cancer.blogspot.com/
or let me know if you prefer an email.

To keep them readable, I wrote a different post for each event. They aren’t all there as I write this, but I expect to have them up soon.

If you want to read only one story, I would recommend the one on the baths:
http://adventures-in-colon-cancer.blogspot.com/2010/09/baths-at-lourdes.html