Context for the messages

I'm setting up this blog a bit "after the fact" in response to requests from folks to read all the messages. This is my first time blogging and my first message on it!

Two years after I was diagnosed and treated for DCIS (a very early form of breast cancer), I was diagnosed with colon cancer. With two young children, I was not excited about going through surgery, chemo and everything those would bring into my life. But, for some things, there is no way around them, only through them. So we moved ahead.

At first, I didn't want to tell anyone. Everyone had been so supportive through my DCIS, I didn't want to show up again all, "Hi! It's me again! Cancer vixen!" It also felt a bit like I was crying wolf.

Then a friend of mine, who also had cancer, noted that
1. This is not "crying wolf." This IS wolf.
and
2. People cannot help if they do not know what is going on

So, I slowly started to tell people.

I continue to be amazed by the support we received. It came from places I never would have guessed or have thought to ask for. I am also amazed by the reactions we received. Though there are some reactions that made me uncomfortable, those were truly few and far between. People were incredibly supportive and positive and did not make me feel pathetic.

In this blog are the messages that I sent to a growing support system as I went on this wild ride. I appreciate and relied on all the support I received, and felt so blessed as I traveled along.

I learned that there is just alot of love in the world.

Hope all is well with you, and happy reading!

Good news from followup tests, and some songs

Hi,

I've been getting some questions about how the CT scan turned out (well), as well as other things, so thought I would intrude on all of you with a follow-up message and a gift.

Overall, life has returned to a new normal. I really appreciate your interest and concern and thoughts. The post-chemo part of the story might sound familiar, especially if you have been down this road yourself or accompanied someone else, maybe not with cancer, but with another medical issue. Even though the medical tests aren't fun, they are a sign that I've moved from the weird world of chemo to experiencing things that are familiar to others. That feels good, as if I am re-entering the real world.

Thank you for your support during the process, and, now, for helping us return to "normal" lives. A few weeks after my last chemo, I had all my tests. They include
- a CT of chest, abs and pelvis. This was the main test where they look for any sign of cancer. And, whew, this was clear. So far, so good.
- a bone density test, because all these drugs can do a number on your bone density. Think, osteoporosis. But, no alarms there.
- genetic testing (found nothing of note)
- baseline blood tests, so that they know what is "normal" for me and can monitor when anything goes up or down
- pelvic ultrasound, because breast-colon-ovarian cancers sometimes go together and I was worried about ovarian next. I'm still working on figuring this one out, because there currently are no good tests for catching ovarian early. But at least nothing showed on the ultrasound so there is no urgency
- and, finally, getting my port removed. This, for me, marked the end of my chemo. When I had it put in, last December, that felt like the true beginning of chemo and I cried through the entire procedure. For the removal, I got the same team, and they remembered me. Oh well. It was a better experience this time. I even got a fancy johnny as a gift from a friend, and wearing that into the procedure felt like I was wrapped in a big hug.

The main two lingering effects that I've noticed are neuropathy and chemo brain. The neuropathy is in my fingers and toes. It primarily makes me prone to dropping things - of course, always at awkward times - and makes it more difficult to do anything that requires fine motor skills, like buttoning buttons or picking up something small. Still, not a major complaint. And, the chemo brain is probably poetic justice, as I have always been really impatient with slow thinkers and forgetful people. So, now I get to live a bit in those shoes!

Oh, and at the risk of oversharing, I did sail into menopause, which is a trip unto itself.

The biggest annoyance is that I find that I am still a bit shell-shocked. A piece of me worries that bad news is lurking around some dark corner, but nonetheless, I'm happy to be getting my energy back, and I'm feeling great. It is wild to get through a day without needing a nap. I actually made pickles the other day and was happily surprised to realize that I still had energy to do other things!

I'm continuing with acupuncture and yoga. I'm starting to look more closely at nutrition. I figure, I can't control much, but if what I eat makes a difference, I'll give it a go. If you thought I was a picky eater before, than hang on for my new level of pickiness! As for activities, I'm trying to make decisions to do things that give me energy, not just what I think I should do. Like everyone, sometimes I'm good at this, and sometimes not.

Oh, I'll share one little tip, in case it is ever useful for you to pass along. When I finished chemo, the boys still had fears about my disappearing, getting sick, etc. Julie suggested and helped my (now) five-year-old throw an "end of chemo" dinner party for us (just the four of us, Julie and her husband). Julie took my son out to buy balloons for the dinner. He took all $4.00 from his savings bank and, after much deliberation about what would be the best present, bought a tiara for me. It was a great time, and it really helped the boys to move forward and be kids again.

So, life goes on. I continue to be so appreciative to all of you for carrying us through all this. As a token of my appreciation, I'd like to share these songs with you.

An amazing local singer and songwriter, Anna Huckabee Tull, wrote these songs and is the singer and one of the musicians on the recordings. Collaborating with her to write the songs was an amazing process. She interviewed me, and I rambled on. There was so much in the experience of having cancer and chemo -- so much crap, so much good, so many messages to take away and changes to me and my life. I couldn't sort through it all in my head. After we talked, it felt like I was handing everything over to her -- all my experiences and fears and feelings -- and trusting to her take care of all of them. I walked away from those conversations feeling lighter and hopeful of the future, whatever it may bring. That was great.

Later, when I heard the songs, it felt like she somehow sorted through all the jumble and made some sense out of all my confusion. I am thrilled with what she created.

These songs are really personal to me, but because you've shared so much with me, I want to share them with you, too. Besides, I shared all the other nutty songs that we running through my head during the past year!

This first song is "From the Inside." It reflects what it felt like going through chemo. It is long and slow and sometimes lonely. However, there is also a fullness to it, and a sense of support and hope running through it. There are overlapping voices in it, just like all the different voices and feelings that were simultaneously going on inside my head. And by the end, it is strong. Though I can't speak to Anna's experience in writing this, she noted that this one was a relatively long, drawn out process and took quite a bit of work as it unfolded.

Here is the link to "From the Inside":

http://www.customcraftedsongs.com/files/fromtheinside.mp3

The second song is called "The Days of your Opening." It is more upbeat and comparatively fast-moving.To me, it reflects the positive elements that came from going through chemo and the potential of the days to come. Again, I can't speak to Anna's experience in writing this, but she mentioned that, after writing the first song, this one just popped out. Sort of like, you have to go through the "work" to get to the sunshine on the other side (my words, not hers). I guess like life.

Here is the link to "The Days of Your Opening":

http://www.customcraftedsongs.com/files/thedaysofyouropening.mp3

If you like her work, Anna's website is:
http://www.customcraftedsongs.com/
and you can sign up to receive her Song of the Month.

The lyrics to these songs are on her website, too. (I couldn't figure out how to attach them here.)

So, that is about it. As life moves ahead, I look forward to sharing good times together! In the meantime, I wish you loads of love and laughter in your life, every day.

Much love,
Marie

CT scan is clean!

Hi everyone,

Since last Sept, I have been hoping to be able to send this happy message. I am almost completely done with treatment and moving into follow- up mode!

In these two weeks, I'm doing tons of tests, but the one I was waiting for was the CT scan to see if any little buggers are still in my bod. And, none showed up! Yay!

I am thrilled to be able to share this news, though, of course, I am cautiously optimistic. I know you can relate to that. As fate would have it, I walked out of that meeting with my good news and and ran slam bang into a woman there dealing with the return of her husband's cancer. A little reminder. Oh well. I'm still enjoying the moment, especially knowing that, if it returns, I would be really bummed out if I didn't enjoy the NOW!

I don't know where to begin to say thank you for your support. You guys were there from the raw beginning, when I was asking for advice on how to prep for a colonoscopy! Your presence is way more huge than I can even begin to get my head, heart, arms around. And, it's almost midnight and I'm tired but wanted to share this while it was still new news.

Much love and all good wishes for a most awesome summer,
Marie

Chemo 12 of 12: The end of chemo feels a bit anti-climactic

The boys and I went to Bermuda over Father's Day weekend. It was a nice trip, though my husband couldn't join us because his passport expired. He learned this when he checked in at the airport. I learned this when I was already in Bermuda, looking forward to his arrival. I had been with the boys for two days, having breakfast as they were raising Cain in the restaurant. The manager came to the table to tell us that "our other party would not be joining us." The only thing louder than my shock was the gasp from everyone else in the resort, who realized I'd be alone with the two kids for a few more days. One gentleman stopped by our table to say that he was about to have his second child and was very scared.

Whoops. It's been that kind of a year! But my mother-in-law volunteered to join us at the last minute. Yes, I was panicked at the thought of being alone with two active boys for the whole weekend! It wasn't quite the family vacation we planned, but, as I'm learning, things can go so far from plan. It was still beautiful and fun, and we returned home just in time for my last chemo.

I got the continuous infusion pump removed on Thursday, marking the end of my chemo. I thought I would be doing my little woo-hoo happy dance now, and I am, a bit. It is a weird feeling, to be done with this. I feel a bit at loose ends. I guess that is normal, though. It just all feels a bit anti-climactic, and I'm not quite sure why. A bit of a downer.

Of course, I am dealing with the usual after-effects of chemo. I'm glad to be done because the neuropathy is getting worse, which is to be expected. I can't feel my toes, and living in the land of Legos-on-the-floor, that is a mixed blessing! There is the usual nausea, general blek feeling, intestinal stuff, all of which should pass. (ha ha -- a little colon humor there).

But these downer feelings, I'm having trouble dealing with. I'm typically pretty good at looking at the bright side of things, and I can do that, I just can't "feel" it.

For example, immense gratitude gets me through alot, and I do still feel that. For example, I'm grateful that it is me and not one of the kids. I often think that, if it was one of the kids, I would pray that there was some way that I could trade places with them. So, maybe I AM trading places with them, and they don't ever have to go through this. I regularly see people who, on a given dimension, have it harder than I do. For example, this week alone, I met a woman with cancer and kids younger than mine. I met people who can't walk or go to the bathroom on their own, both things I regularly give thanks for. I mean, just the simple act of getting up to get my own drink of water is HUGE. I'm grateful for the interactions I get to have -- I had a wonderful phone conversation on Friday, for example, that lifted me up.

Maybe I'll feel differently after the CT scan (in two weeks). If that is clear, maybe I'll feel some euphoria. Or relief. Or maybe chemo is my new "known world" and now I'm entering the world of the unknown. Plus, I know enough folks who have had their cancer return, or, like me, have had more than one cancer, so I'm under no illusions that this is the end of the road. So, really, all I (or anyone) can do is to take things one at a time, and that has to be enough. In a way, it really is, as each day truly feels like a gift. I admit, that is hard to remember when one of my children wakes up at 5 am, ready to greet the day! Still, to be able to get up at 5 am is a blessing in itself.

I guess I'll just move through this and see where it takes me. Sitting with these feelings is a challenge for me.

I always thought that an experience like this would be a life-changing event. A friend of mine, who is a hospice nurse, once told me that people don't necessarily become more enlightened; usually, they become more of themselves. I definitely don't feel more enlightened, but maybe I have become more of myself. Who knows?

Here are three things, though, that I'd like to share as I sign off on these regular e-mails.

Physically
Get tested. In my experience, cancer doesn't hurt in its early stages. But, that is the time when you need to spot it in order to eradicate it from your body. So, if you've been putting off that colonoscopy, mammogram, whatever test, do it. It does take time, and we are all busy, but believe me, chemo is much more of a time sync, and you don't want to go there! But, if you do find yourself there, it is do-able.

Spiritually
This has definitely strengthened my belief in a higher power. The way things came along at just the right time, the way events just seemed to work together...all that could not have been orchestrated by me. The power of prayer has really helped to sustain me at times, too.

But, even if you don't believe in God, I have to put in a pitch for the power of the collective. You can feel it when you have a coffee with a good friend and walk away feeling happy and energized. That is a feeling, an energy, you can generate together, not alone. During this period, the power of everyone, together, supporting me and our little family through this was like the energy of meeting one good friend, magnified. It created a strong web that continues to carry us along. It is a tangible feeling, and I hope you have that in your life, too.

Emotionally
Yes, I am addressing emotions last because I hate to address my emotions. It is such a messy area; anyone who has seen me try and organize my clutter knows that I don't like to tackle a mess alone! I can't even begin to describe my gratitude for your company as I navigate the funky emotions I've encountered along this journey. I've found some things I'd like to hold onto, and will work to do so. I want you to know that your presence, whether in person, over the phone, over e-mail or over the cosmos, is so strong and touches me so deeply that I can't describe it.

Thank you for being there. You have made a huge difference and an immense impact. I don't know how to show it, but maybe I can pay it forward, and I look forward to sharing good times with you.

For now, though, I'm just hanging out. Thanks for hanging out with me, too, in this ultra-weird place!

Love, Marie

Chemo 11 of 12: Mixed feelings and a chemo spill

Wow -- almost to the end of chemo! It feels like such a long road, and probably feels even longer to you. Kind of like "Are were there YET?" I do appreciate your being here with me, in any capacity that you are able. Though journey does feel long, I can't imagine how long it would feel if I also felt alone.

Of course, realizing that I am reaching the end of treatment has both physical and emotional components. I'm so eager to be done; I feel like just skipping the last treatment and saying, "okay, I've done enough." Except that if this ever returned, I would feel like I didn't do all that I could have to keep it away.

At the same time, it is hard to believe that regular visits to the hospital will not be part of my life. I can't even think that far ahead.

On the physical front, this week's chemo session went much more like my earlier ones, and I'm feeling okay....just the usual mild nausea, fatigue and neuropathy. Yay! Being an "eat dessert first" kind of person (even if my taste buds currently distort the taste of dessert these days), I booked a short vacation for my husband, the kids and me for my "off weekend", just before my last chemo. I couldn't wait to start celebrating. Well, actually, the driving factor was more about taking a vacation while I could, before any other "bad" news comes along.

The doctors appear to be optimistic, though. Dr. N is the Fellow on my team, and he is great, cheerily asking me about my plans for after I chemo. We have plans for celebrating the boys' birthday, visiting friends, heading to Maine, but mostly, frankly, my plan was to hunker down and continuously whisper something like, "I hope it's really gone. I hope it's really gone." Maybe toss in a talisman or two.

He kept repeating that they feel like this will be cured, and, while I am scared to be that optimistic, it was good to hear.

My red and white cell counts were good (yay) and he shared my liver numbers, which seem to be a marker of how my body is handling the chemo. Over the past two treatments, my liver numbers have moved into the range of normal. They found that to be interesting and good news. I mentally noted that that was since the "healing session." I'm not claiming cause and effect: Though I believe in the power of prayer, I also believe that cause and effect can be a complicated equation. But it is an interesting observation. And hey, if the healing session could do that, maybe chemo can work as well?

Anyway, I originally met Dr. N when he was a Resident at Dana Farber and I was looking into getting my treatment there. He moved to MGH as a Fellow and joined my team in January, so he's been with me from the start. It turns out that the end of his Fellowship coincides with the end of my treatment. I love it when life is poetic like that.

On the scary radiation and chemo front:

I went to the dentist this week. They wanted to do an x-ray, and I asked a million questions before I let them take it. Given the amount of radiation I've had so far (and will get in the future, with my ongoing CT scans), it seems funny to focus on one dental x-ray.

On the chemo front:

Then, during chemo, I got to experience a CHEMO SPILL! Okay, that kind of freaked me out. You may have noticed another post where I recently, jokingly, took a picture of the Chemo Spill Kit. Sometimes, I think that one of God's favorite tools is foreshadowing. At the time, I thought that the chemo spill package was funny. Now, joke is on me. ha ha

Before I get chemo, they insert a small needle into the port in my chest, much like they would insert a needle into your arm to draw blood. This particular needle has a tube dangling from it. First, the nurse draws blood through the tube. A few hours later, she attaches an IV to it to administer all the drugs.

The first set of drugs are "pre-meds", which include steriods, anti-nausea drugs, and Benadryl. I used to get these in pill form, but since my big "bad" session, I get them in IV. So, they hook these up to the tube, one after the other, and I am tethered to an IV pole. After they disconnect these, I usually take the opportunity to go to the bathroom, get a cookie, and any other wandering I might like to do without my IV pole. When I return, the tubes are then attached to the chemo drugs (which then hang on an IV pole).

This time, I had a different nurse, and when wandered off, she laid the chemo IV tube down on the armrest of my chair. When I returned, I sat in my chair and waited for her. I was eating my cookie, watching my little movie, and I felt something wet on my arm. The saline and chemo were pouring out of the tube. Well, now I know the rate at which it goes into my veins. It was all over the armrest, pillow, chair, basically, everywhere.

Yes, I did freak out. It was surreal to look at the nurses, in their protective gear, as they were telling me it is no big deal.

After I washed up, I was ushered to another room and they basically closed off that room as if it were a nuclear waste zone. Lovely.

Thankfully, the rest of the session was uneventful, and I was able to WALK out this time. Yay!

So, life goes on. I got to celebrate my birthday, and I cannot believe how grateful I am to be able to do that. My four-year-old graduated from Beginners (think, pre-Kindergarten) this week. I was thrilled to be there, chemo pump, gloves and all. Of course, I was all weepy but I have to say it was a really sweet ceremony and he had a great time.

When I went to get my pump removed later that day, my four-year-old came along and wore a Buzz Lightyear costume. He was in character during all our time in the Infusion unit (where lots of nice people gave him lollipops and ice cream and paper airplanes) and as soon as we left the hospital, he removed the costume and became himself again. I guess he is my superhero!

Thanks to you all, too, for being my heroes, carrying me along and sharing your magic. Just a bit longer (knock wood, fingers crossed).....I am eager to be done but I think the thing I will miss most is the opportunity to connect with you.

Love, Marie

Current song that I can't get out of my head is Thunder Road by Bruce Springsteen, which I find full of hope and optimism

Chemo 10 of 12: The power of prayer and Ms Webster's dog

I feel like the finish line is in sight. I hate to count on that, but I am hopeful.

Thank you for all your notes of support. Even when I can't answer them, I love getting them and reading and re-reading them. Thank you for your prayers and hope and love.

This chemo round, thankfully, went much better than my last one, and more like my earlier ones, with one exception: Before they gave me chemo, they filled me so much anti-nausea medication that I slept through the whole thing. Again, I was wheeled out of there, barely conscious, but at least I didn't get sick.

In the days following this chemo, my neuropathy and fatigue returned, kind of unwanted but familiar companions, so that is reassuring. What used to be "mild nausea" after chemo is now more insistent, but still manageable. Mostly, I'm in bed from Tuesday - Sunday. If I absolutely have to go out, you'll see me roaming the streets, trying my best to stay awake. On those days, I don't remember most of what I say or do, so you'll need to repeat those things to me!

On Thursday morning, my four-year-old son took me to see and hold Ms. Webster's dog. Now, I don't actively dislike dogs, but I'm not much of a dog person. My son heard that dogs help people get well, and he wanted this for me. So, I held Ms. Webster's dog.

Later that day, I had my pump removed. When my son got home and saw me without the pump, he was overjoyed. His eyes were filled with pure light. He kept exclaiming, "I KNEW IT! I KNEW IT! I just KNEW Ms. Webster's dog would make you well!"

Who am I to argue? Earlier last week, I attended a Pentacostal .... something. Revival? Prayer Service? Healing? Not sure what to call it. It falls into the category of "I'll try anything." I have to say, it was wild. and Powerful.

It was led by a southern white preacher (complete with toupee) and his supportive blonde wife (sans the Tammy Faye makeup). I was a little distracted by the way he cupped his left hand behind his left ear everytime he said "Hallelujah!" From the crowd, there were lots of Hallelujah's and Amen's, waving hands, some dancing / swaying in the aisles, others kneeling and bowing low in prayer. As a Catholic, it is definitely a different kind of service for me, but I am curious about and open to all religions. So while I couldn't get into it in the same way as many of the other folks, I stayed to see what this was all about, as much as I could learn. And, there may be some healing involved! It was worth a try.

It was held in a church in Central Square. Actually, it was originally scheduled to be held in the Charles Hotel in Harvard Square, which, weirdly, gave it a bit of credibility in my eyes. But, earlier that day, they moved the venue to a church in Central Square, which somehow seemed more fitting. Since I was already planning to go, I hopped the T to Central Square and found the church.

(For anyone not familiar with parts of Cambridge, I would describe the Charles Hotel as respectable and higher-end, and Central Square as an area that is diverse and comfortable for anyone who lives on the fringes of society.)

I wandered up the aisle on the right side of the center, and took a seat on the aisle of a pew a few rows back from the front. This way, if I stayed, my friend, Lisa, could find me. Or, I could easily escape if I needed to! From here, I could see most of the action, while keeping a comfortable distance from all the fervor.

Soon, Tyler joined me. He seemed to be a very nice young man from Texas. His wife was home experiencing the first trimester of her first pregnancy, and he couldn't find the friends he was supposed to meet. So we sat together. He practices a religion where you face each other and participate by sharing your thoughts and ideas, so he was out of his comfort zone as well.

THEN they asked everyone to hug and greet everyone else who was nearby. Yikes. I first turned to Tyler and said, "This is weird for me." But everyone seemed to be pretty nice, I decided to think of it as a "sign of peace" thing (from the Catholic Mass), and it did get things moving. Since this seemed like the kind of service where it was okay to talk to each other, Tyler and I talked a little bit. He also did some texting and writing, and I noticed that the folks in the front row were taking photos with their iPhones. The open use of technology made me more comfortable, and I relaxed and decided that anything I did would be probably socially acceptable here.

Lisa soon joined me and the three of us kind of got into the service in our own way. The music was long and powerful, and I started to feel a bit enveloped by the whole thing, in a good way. Sort of like being surrounded by this puffy cloud. I had to leave after two hours (and people think that Catholic Masses are long!), so I said goodbye to Tyler (who said a nice prayer over me) and to Lisa (who sent me off with good vibes). I took the T home from Central Square (completely forgetting that my white cells counts are low and I shouldn't expose myself to the germs of the general public -- oh well).

When I got home, Lisa called me on my cellphone. They had reached the "healing" portion of the service, and invited those in attendance to call anyone who needed healing but couldn't be there. So she called. What a sweetheart! I couldn't hear the words very clearly, but I stayed on the line. And, weirdly, this intermittent pain in my liver, which I had since my MRI in late November, just vanished. It went away in a way that it hadn't before. Just gone. I'm both suspicious and loving it. Mostly loving it.

I wanted to say, "Just call this number, and for 99 cents a minute, you can be HEALED!"

Between that and Ms. Webster's dog, I'm doing pretty well. I wasn't supposed to get this pain-in-the-butt disease anyway, so who is to say what works, right? Frankly, chemo feels a bit like voodoo to me, and it has uncomfortable side effects to boot. But...I'm doing that, too. When you don't know what to do, best to cover all the bases.

At the core, though, this reaffirmed for me the power of prayer or any kind of intention, as well as the presence of angels in any form. Thank you for being part of all that, in such a huge way. Every good vibe you are sending this way has its own impact, and all the ones together are making positive changes, both for me and, I would bet, for our planet. Every little bit of love and peace helps.

I hope you are having a truly lovely Memorial Day weekend, remembering all who sacrificed so much for us, and, at the same time, enjoying the start of a beautiful summer season because, well, we can!

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!

Grace and Compassion

Hi guys,

Okay, put a question out to the Universe....watch out for the answer!

I was wondering why I felt such intense compassion when I am in more sorrow, rather than in everyday life.

Today, I got this in my e-mail. I'm excerpting the relevant parts:

Another teaching of sadness is compassion for others who are in pain, because it is only in feeling our own pain that we can really understand and allow for someone else’s. Sadness is something we all go through, and we all learn from it and are deepened by its presence in our lives. While our own individual experiences of sadness carry with them unique lessons, the implications of what we learn are universal. The wisdom we gain from going through the process of feeling loss, heartbreak, or deep disappointment gives us access to the heart of humanity.

Even though this kind of serendipity happens all the time, I am constantly amazed.

Love,

Marie

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

Radiation is off - cancelled altogether

I interrupt the regular every-other-week message for this special announcement: No more radiation treatments. At all.

Monday and Tuesday were really long days at the hospital. My white count just seemed to be dropping to the basement after each treatment. I ended up doing three treatments over two weeks. In the end, it was determined that radiation would likely do more harm to my bone marrow than good for my cancer prevention program, so we nixed it.

I was quite impressed with the team of doctors who came together at a moment's notice. That is always a bit daunting, to see them drop what they are doing and come from various corners of the hospital.

I'm still processing that meeting. I thought that low white count was a normal side effect of chemo. Apparently, I present this in an usual way. Lovely. As in, "I've honestly never seen this before. I'd like to stay involved to see how this turns out." Hmmm. Not a reassuring statement from a doctor, but good to know, and doesn't sound horrible horrible. Besides, my attitude is always that there is room for one more at the party, so any doctor who wants to be involved, come on in!

Speaking of more opinions, I learned that mine was a case study at Dana Farber because my case is unusual. I'll spare you the details, but I got to hear the ideas of the other doctors at the conference, so that was cool.

Anyway, change in plans. I start chemo again on April 8, back to my every-other-Tuesday regimen, followed by two days of continuous infusion chemo (and the pills, neuropathy, etc.). It's kind of the devil you know, and there is some comfort in that.

Sometimes, this path really stinks. I hate not knowing if I will be at the hospital one hour or eight hours. I hate wearing that pump. I hate the side effects of chemo. I hate having the energy to do only one thing each day. I hate that I see other people there who are having a hard time, and it breaks my heart that they have to go through that. I hate that I found the book Oliver's Story in the infusion room. (Oliver's Story is the sequel to Love Story, where the main female character dies of leukemia.) And I hate that I was compelled to read that book while I waited.

I hate that my kids are experiencing this through me, and that there are times that I can't do normal things with them. I hate that we can't plan ahead, even to have a playdate, because I seem to always get suddenly called into the hospital.

But, it is good that my schedule is flexible enough to tolerate long doctor appointments, that they have this traveling pump so I don't have to sit in a hospital room for two days to get the infusion, that there are drugs to help with the side effects, and that I am able to do one thing each day. It humbles me to see others in the waiting room. And I'm hoping that my kids, going through this, develop strength of character or some other positive attribute as a result.

I sometimes feel like I am rowing down a river with a strong current, and the river is filled with rocks, both seen and unseen. But if I pay attention, there are guides along the way.

The doctors have been really on top of all this, and they are great guides. I get to work with the Fellow I liked at Dana Farber -- he moved to MGH. The radiation oncologist is smart and caring, and today, I met the oncologist I'll see while mine is on maternity leave. I really like her. The hematologist I adore is staying involved. And I get to keep my chemo nurse through all this. Fortunately for me, she used all her vacation on her honeymoon so she will be here through my treatment. Yay! All these people listen really well and have insightful thoughts and experiences to share.

There is a person who works in the infusion room with the same last name that my older son had at his birth. Wild. On top of that, this fine gentleman at MGH taught me alot about meditation and breathing.

The other patients are also good guides, each in their own way. What a diverse world we live in!

So, while this path sometimes stinks, I am reminded on almost a moment-to-moment basis that it is so important to be in this moment, that we have this moment, and that is everything.

Thanks for listening to this saga. It has been a crazy two days. I hope that yours were more sane, but I suspect they were crazy in their own ways. I'll be back to you on April 8 or so!

Love, Marie

Radiation cancelled for this week

Thank you for the prayers and good wishes and positive energy and notes and letters and cards and food and EVERYTHING!

Here is the high-level summary. Details are below.
Got the tattoos and did the dry run for radiation, but due to low white cell count, my first week of radiation and chemotherapy was cancelled. We'll try again next week.
----------------------------------

Last week, I got the CT scan and tattoos to set up for radiation. I had to drink a drink before the CT scan, but it wasn't too bad. The IV is always terrorizing, so that was normal. Getting the tattoos felt like getting pinched by a needle, but it wasn't too bad overall.

This week was supposed to be my first week of the combined radiation/chemo therapy, for any of you keeping track.

My normal routine is supposed to look something like this:
Mondays: Go to the infusion room (ugh -- even just typing that made me nauseous). Get attached to the pump so that I can have continuous chemo five days a week while I am getting radiation. I get to wear this thing five days a week now. I thought two days a week was onerous!
Monday thru Friday: Go to the radiation room, get radiated. Leave. Radiation takes about five minutes, but you need to allow an hour because you just do.
Friday: After radiation, they remove the pump and draw blood to test my white, red cell counts, liver, etc.

This week, it looked like this:

Monday

I thought this would be Day 1. But, it was just a simulation, kind of like a dry run.

Under the category of "Angels appear in various ways", someone from my yoga class used to head that whole department at MGH. So she met me there and introduced me to everyone to help things go a bit more smoothly. It was fun to see her outside of yoga, and incredibly generous of her to get up early and spend the morning with me there. I don't normally see her outside of yoga, so it was one of those funky coincidences that one can only marvel at.

Tuesday:

So, I thought THIS would be Day 1. In some ways, it was. I arrived early, went to my normal infusion nurse and got hooked up to my chemo bag (the continuous infusion pump that I am supposed to wear five days a week through radiation), then made my way to radiation, which is in the basement of another part of the hospital.

Because these machines need to be stable, they are typically located in the basement of a building. For a claustrophobe like me, that can be crazy-making. But, the building designer kindly put stairs within sight of the waiting room, and at the top of the stairs is the door to the outside. That helps!

Got the radiation done. People were really nice, though for me, someone who doesn't even like to use a microwave, it was a funky thought to be purposefully irradiating my body. For my radiation, I lay face down on the table and they line up lasers with my tattoos. Then everyone scurries out of the room while the radiation happens.

Went home. Got a phone call -- My white cell counts were too low. Return to the hospital and disconnect the pump.

So, I got a little further on day 2! But, no chemo or radiation this week while we wait for the white cells to rebound.

It's nice to have a week off. Another week to get used to the idea of living with the pump. I get to take showers without worrying about getting it wet, and I get to sleep without worrying about tangling myself in the tubing. Woo hoo!

Of course, it puts off the treatment for another week, but let's not look at it that way...And after that little bit of radiation, I needed a nap, so I can see why people say that I will likely experience fatigue.

A couple of other things: The waiting room for radiation is WAY more chatty than for infusion. In the infusion waiting room, people don't really talk with one another. In the radiation waiting room, strangers compare cancer stories. And, it is sobering. You hear things like, "Hey, Dad, he has throat cancer, too!" and "What stage are you?" The only other time I've heard strangers open up so much to each other is on an airplane. And, like I do on an airplane, I sit and read my book. It's a bit much for me.

The kids are doing alright. My four-year-old is getting used to the idea that doctor appointments are non-negotiable, but is a bit tired of it all. (join the club, I guess) My one-year-old is, well,your typical 20 month old, and mostly, he just wants someone to throw a ball with and sometimes, at.

My husband is hanging in there. I figure that it is a good thing that his best friend and I are both at MGH. Unfortunately, between accompanying his friend and me, my husband is there often enough that one of the doctors asked if he professionally drives patients to their appointments. We also have another friend who is going there (for a completely different reason), and yesterday, my husband was there with me, then there with his friend, and then ran into our other friends. We need to expand our world and find better meeting places.

The song stuck in my head this week is No Rain by Blind Melon. Who knows why. Lyrics are below if you are interested. Maybe it is oversharing. I put the words in bold that stand out to me.

Well, I'm psyched to have a week off, away from the chemo pump. In fact, today, for the first time since I started treatment, I've been able to do more than one thing during the day. Yippee! I hope that you are having an awesome week, too!

Happy Spring!

Love, Marie


No Rain by Blind Melon

All I can say is that my life is pretty plain
I like watchin' the puddles gather rain
And all I can do is just pour some tea for two
and speak my point of view
But it's not sane, It's not sane

I just want some one to say to me
I'll always be there when you wake
Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made

And I don't understand why I sleep all day
And I start to complain that there's no rain
And all I can do is read a book to stay awake
And it rips my life away, but it's a great escape
escape......escape......escape......

All I can say is that my life is pretty plain
ya don't like my point of view
ya think I'm insane
Its not sane......it's not sane

Preparing for Radiation

This is the machine they use to give radiation. The flat board in front of it changes shape (has all kinds of attachments) depending on the part of the body being radiated. For mine, I get a little space to put my head, like you do when you get a massage. That is what is pictured here. Then the board (with your body on it) slides under that big round disk. High on the walls are little black boxes. A laser shoots from these and should hit my tattoos; that helps them figure out whether I am in the right position, then they start the radiation.

The scene in the infusion waiting room

Since it would be rude and intrusive to take photos of the infusion waiting room when it is full of people, I wanted to share that picture with you verbally, if you are interested.

The first thing I do, when I round the bend and can see into the room, is to check if my friends are there. I met this couple at my birthday party in 1994, and we've all been friends since. Though I hate that we are both there, I do look forward to seeing them, no matter where it is.

The waiting room is definitely a study in all walks of life and how cancer just doesn't discriminate. There are people from every ethnic group and nationality. Sometimes, it is easy to tell who the patient is, like the woman with the headscarf who came over winter school vacation with her two pre-teen daughters.

Often, I'll notice a family of three: Parents and an adult child. I cannot always tell which is the patient. Most often, like the Portuguese family yesterday, the parent is being treated and the child is the translator.

For the Chinese couple with their son, I wasn't sure. The father and son both sat slouched in the seat, the father is sullen and silent, mother speaks animatedly to the son. Could be the father -- turns out, it was the son.

Another touching scene was of parents and an adult daughter, chatting casually like they were on an errand. Then a name was called, the father stood up with his back straight and shoulders squared. His wife and daughter each gave him a kiss, and he walked back to the infusion unit, alone and just looking so brave. That still breaks my heart.

I loved the two black gentleman, sitting together, not talking. Then a lovely, cheerful, beautiful young black woman entered the room to meet them, the men both lit up and it became like a little party!

There is another man that I see on Thursdays; he dresses, all winter, in shorts and a printed shirt, wanting to defy both cancer and the winter weather. I enjoy talking with him.

Or the skinny black woman with a wonderful headwrap, who told me, they can't do anything to you that you do not choose. She is great!

Chemo six of six: Phase One (of three) done

Message is long, bottom line:
Finished Chemo Six of Six -- phase one (of three) done.
Radiation is up next. I start the basics next week, radiation itself on March 17.
Things are going pretty well overall, and I am riding on all your support and am very grateful for it.
----------------------------


Monday, day before chemo:

Well, my final chemo for this segment is tomorrow and I wish I could say I was psyched, but mostly, I'm feeling like I can check one thing off my list. Whew. But I'm not counting my chickens, yet....my blood counts have to be good, and I wasn't as focused on building them this time around.

Since I last wrote, my life seems to be a series of "be careful what you wish for."

Wish #1: Tattoo on my lower back

I used to wish for this, but I'm over this one now. I guess I forgot to tell the Universe.

I met with the radiology oncologist last week, to go over the risks and "rewards" of radiation therapy, to help me decide whether or not to do it.

My radiation oncologist and his resident are truly a funky team. He is about my age, Asian, very kind, nice and smart. Seems to be reserved. His resident is this tall, beautiful black woman with braids all over that reach the middle of her back. She wears stylish clothing and heels. I was in awe and I LOVED her style!

He went over all the risks, both short term and long term, as well as the benefits they feel it has.

The main benefit: it reduces the risk of recurrence in the same area. This is good because, well, no one wants yet another cancer. Much less, the same cancer. I mean, been there, done that. And, for the area where my cancer was, if it recurs there, my quality of life would be impacted. No shit. okay, don't take that literally, just a little colon humor! It is just that cancer impacts your quality of life anyway, so it was a funny way for him to describe it. And, a recurrence in the rectal area is more difficult to catch and treat. (The chemo I've been having reduces the risk of distant recurrence, but not local recurrence.)

Risks: I won't go into the long list of risks here, except to say one of the risks is of a second cancer developing. Given that this is already my second cancer, this risk does not seem small to me. So we talked about the types of cancers that might result, etc. so that I can monitor that as well as I can. Ugh.

Oh, and it is likely to throw me into menopause. Menopause and chemo -- what a combo. Watch out world!

Because I have two small children and I'm basically still a product of Catholic school, I tend to defer to authority. Still, I thought alot about this, and my husband (a radiologist) researched it as well. I decided to take a deep breath and move forward with it.

Thank you to everyone who gave me cautions and questions and positive comments for the radiation therapy. It helped alot in preparing for that meeting, exploring the facts and my own feelings.

So, next Monday (March 10), I get a CT scan so that they can give me tattoos on my lower back to precisely mark where they should position the machine day after day. The tattoos will be dots the size of a freckle; I can always turn them into an interesting design later.


Wish #2: Maintain my current weight

After my surgery in October, I lost 15 lbs. Since starting chemo, I gained about a pound every two weeks. (You get weighed every time you step into that doctor's office, so I know. I never used to weigh myself. Now I feel like I am on Weight Watchers.)

Last week, I reached the point where I said, okay, I've gained enough weight for now. Mostly, I said it to myself (and now, you), because no one wants to hear a chemo patient complain about GAINING weight.

Then, over the weekend, I had some -- let's call them complications -- and the doctors wanted to explore further before continuing my chemotherapy or radiation. As in, make sure there were no new tumors (we have since learned that there are not).

Sometimes this feels like a game show -- cancer in the lymph nodes? BING -- you win chemo. Complications from your colon? BING -- you win a colonoscopy.

I was quite impressed with how quickly they could schedule the colonoscopy. While it is nice to get an appointment right away, you know it means that the doctors are concerned. In the prep, I lost a few pounds. Hmmm. Not exactly the WAY I wanted to maintain my weight, but I guess I got my wish....

I feel like I am rubbing Aladdin's magic lantern and just saying all the wrong things! After all this, I will be more thoughtful about my wishes.


Wish #3: Feel less like a "patient"

Last week, the Boston Globe had an article on Designer Hospital Gowns! So, I'm very excited about selecting one or two of these to wear for my treatments. They are a little pricey (by my cheapo standards) and I plan to burn them after this is all done, so I don't want to buy too many. But I'm thrilled to find them.


Chemo day:

Thankfully, I was able to get this last treatment -- little happy dance here.

My white and red counts were good, but I learned today that my liver numbers have been steadily increasing, so today they lowered the dose of some of my chemo. I guess the idea of getting chemo is to kill as many cells as possible without killing the person. So even though I am feeling pretty good overall, it is affecting my liver. It should rebound, though. It felt a little like a downer, like I didn't get to go the distance, but it is also important to learn where the boundary is.

Today was pretty low-key -- it was nice to have some visitors, and I got my favorite chair with a great view of Boston.

So, here we go, again with the anti-nausea, anti-constipation drugs, the fatigue and neuropathy. It is kind of a familiar routine at this point. And it's done for awhile.


I can't thank you enough for all your support, in so many ways. I know that some of you from far away feel like you can do nothing but send good vibes, but those are HUGE, as is everything that those of you nearby have done to support me and my family.

Love, Marie

Colonoscopy results good!

Hi everyone --

Just a quick note to let you know that, other than one extremely
annoying nurse, the colonoscopy went well and nothing bad was found.
Woo hoo!!!!!

Love, Marie

Live Like you were Dying

So, I finished the e-mail, got in my car, and the song that was playing, right at the start, was Live Like you were Dying by Tim McGraw.

At first I took it as a message -- like, uh oh, am I truly dying? Is this the beginning of that?

Then I remembered what we talked about last night, where at first, I was doing all the things and working toward being all the things that I really wanted to do and be, but then I returned to my "old life and old self" and that was bothering me. Thinking about this, I decided to interpret my hearing that song from a slightly different angle, to get a different message, that this can be viewed as a gift (sort of like what Kerry was talking about) and this song was a reminder to do that.

For anyone who doesn't know the song (it is a country song), the lyrics are below. The really funny part is that I identified with the lyrics in at the start of the song ("I was in my early forties") and now realized that perhaps, I only think that I am in my early 40s!

Off to acupuncture.

Love, Me


He said I was in my early forties
with a lot of life before me
when a moment came that stopped me on a dime
and I spent most of the next days
looking at the x-rays
Talking bout the options
and talking bout sweet time
I asked him when it sank in
that this might really be the real end
hows it hit you when you get that kinda news
man whatd you do

and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and I loved deeper and I spoke sweeter
and I gave forgiveness Id been denying
and he said someday I hope you get the chance
to live like you were dying.

He said I was finally the husband
that most the time I wasnt
and I became a friend a friend would like to have
and all the sudden going fishin
wasnt such an imposition
and I went three times that year I lost my dad
well I finally read the good book
and I took a good long hard look
at what Id do if I could do it all again

and then
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and I loved deeper and I spoke sweeter
and I gave forgiveness Id been denying
and he said someday I hope you get the chance
to live like you were dying.

Like tomorrow was a gift and you got eternity to think about
whatd you do with it what did you do with it
what did I do with it
what would I do with it?

Sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and then I loved deeper and I spoke sweeter
and I watched an eagle as it was flying
and he said someday I hope you get the chance
to live like you were dying.
To live like you were dying
To live like you were dying
To live like you were dying
To live like you were dying

Another colonoscopy

For the first time ever, I found blood in my stools. Yikes. I didn't even catch this before having cancer. And now, there it is, undeniably.

Reluctantly, I told the doctors, who ordered a colonoscopy. Of course.

I was originally told that they only needed to look in the lower colon, not a full colonoscopy. BUT, today, I was informed that it would indeed be a full colonscopy.

I freaked out.

I don't know what it is. The fact that everything is so out of my control? That people are poking and prodding at me all the time? That I just had enough? And the woman booking the appointment just couldn't understand my need to understand more about the procedure, what the doctor was like, etc. And I just felt like life sucked. I rarely feel like all of life sucks, so that in itself sucked. And down the vortex I went, into the ocean's drain with all those frigging plastic bottles and flotsom and jetsom that will just never go away.

They wanted to postpone my chemo to do the colonoscopy and all I could think of was that Tania and Eleanor and maybe Kerry would be coming with me to chemo this week and I didn't want to reschedule it, and also because the end was in sight. So she agreed to squeeze me into Friday's schedule so that I didn't have to change my chemo day.

After all that, just before the procedure, I burst into tears and was crying and dreading the IV and unconsciousness when I heard Stephanie's voice saying, "IVF nap" which cracked me up while I was crying and maybe made me look like a crazy lady but I felt better.

So thanks for meeting and the bright spots that carry into today. And thank you so so much for listening and being there.

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

Livingston Taylor makes my day!

I am kind of star-struck so I have to share this with you guys!

Livingston Taylor was at my father-in-law's birthday party. I got to talk with him and tried not to act too star-struck. Then he sat down and played the piano and sang to my husband and me. No one else came over to listen, so it felt like a personal concert. I just loved that!

Mammogram results good, and removed the pump MYSELF!

Before Chemo

Once again, I'm headed to chemo filled with awe and gratitude for the support you show in so many ways. Thank you so sincerely. This can be such an isolating experience and you make it feel so much less so.

This week has been so good that my last chemo feels like ages ago. I'm loving that.

Well, it was a relatively uneventful week, other than the Pats losing, but hey, what a great streak and great team, and besides, being from Pittsburgh, I'm probably still a Steelers fan at heart.

Two significant events that I wanted to share.

First, my mammogram and exam showed no signs of cancer. Whew. I can't believe what a huge weight that is off my mind. Before that, I was going into planning mode for how I would manage two cancers at once. But, once I got rid of that worry, I found that I had alot more energy. I guess I was expending alot of energy just thinking about that. It was great to see my breast surgeon and catch up with her as well. She is truly an angel on earth.

Second, many of you know my little routine: chemo on Tuesday, get the continuous infusion pump, wear it until Thursday, then have it removed.

I've either gone to see my husband at work to have it removed, or gone to MGH to have it removed. But I am actually supposed to be able to do this at home myself. The idea of doing that kind of freaked me out, so, I decided to just drive to MGH and have them do it. I felt a bit lazy and a little bit like I wasn't stepping up to the challenge. If everyone else does it, I should be able to, too. But I stuck with my routine.

To make a long story short, on Thursday, my car wouldn't start and, once we jumped it, wouldn't stay running. By the time I waited for the tow truck, it was too late to call a cab so I HAD to remove the pump myself. No choice. Sometimes those messages from the Universe are more direct than others.

I laid everything out on the bathroom floor, all around me:
- Saline syringe to clear the line
- Heparin syringe to keep the blood from clotting
- Sharps container to dispose of the syringes
- Rubber gloves to protect my skin from any chemo that might leak out -- yikes
- Plastic bags to hold the tubing and infusion machine after I remove it
- the FedEx box to return the machine

I had my nurse on speakerphone giving me instructions and walking me through it, and the kids with a babysitter two floors away because I didn't want them to be anywhere near this.

I got through it with no spills and without throwing up. I was really proud of myself for doing it, and afterward, decided that I will continue to go to the hospital to have it done. It just gives me some emotional distance from all this.

Oh, and they never could find a problem with the car, and it seems to start fine now.

It was great to have a relatively uneventful week. I'll write a bit more after chemo. Whenever I go in for chemo, I feel like a lightweight fighter going into the ring against a heavyweight champ, with only my attitude to help. Kind of like, I know I am going to get pummeled, but I'll give it my best shot and see how it goes.

After Chemo

My blood counts were a mix of good and low. I don't mind so much -- it's asking alot of my body to rebuild itself from chemo over and over. They were good enough that I had chemo on Tuesday. It was relatively uneventful, and nice to have a few visitors while I was there. Coincidentally, one is a friend who is a fellow patient. It's more fun to meet at a good restaurant, but still nice to have friends around.

Wed and Thursday, I wore the pump. Not fun, but it is getting to be routine.

Neuropathy is back, but not horrible this week. (knock wood) Taste buds are definitely affected: Chocolate is tasting gross now.

On Friday, I got my shot to increase my white blood count. I don't know why that part is so traumatic for me, but it is. This time, I didn't have my regular nurse, which throws me off. She was out, and the one I got was a pretty impersonal kind of guy. After I left the office, I knew I couldn't drive so took a nap in the healing garden (this little indoor garden they have) then went home and slept for the rest of the day. I get bummed out that I am missing out on general day-to-day life when I need to sleep, but at least I have the luxury of being able to do that.

That's it for now. Thank you for listening!

Oh, I'll pass along something I heard this week: I hope that every day, you can laugh, cry (or otherwise emote!) and think.

Love, Marie

Chemo #3: Red and white counts are down

Thank you so much for your e-mails and your positive thoughts and prayers. I can't say how much they mean to me. I know that a number of you are climbing your own personal mountains right now, so I suspect you know what I mean when I say that your prayers carry me when I feel like I am dragging. Thank you so much. I'm sending all that right back at you, too. You are awesome for hanging in there with me.

Because I had a hard time writing after the last chemo, I'm writing the first part of this message prior to chemo, and will finish it when I return.

The Countdown:
A few people asked about the countdown, how many chemo sessions there are. It is a bit unclear. The schedule looks something like this:

Chemo: 4 - 6 sessions, one every other week. I'm not sure what determines whether it is 4 or 6 sessions, and no one seems to be able to tell me. They say that they will know when they are done. Okay.

Radiation: This part is pretty fixed. After the 4 -6 weeks of chemo, I get radiation M - F for 5.5 weeks. During those same 5.5 weeks, I will have have continuous infusion chemo (and wear the pump), M - F. I get weekends off!

Then I have a few vacation weeks. Woo hoo! Except, I am told that my body will need these to recuperate. Hmmm.

After that, chemo again, this time, 4 - 8 sessions, every other week. Again, don't know what determines the length, though they tell me that most people don't last that long. That scared me, but they reassured me that it wasn't because they were killed by the chemo, but that they were just tired of the whole thing and asked to be done if they could. Again, not something you really want to hear, but I'll cross that bridge later.

The whole thing takes about 8 months overall. So -- I'm on this program until the end of August or so. Are you thinking "ugh -- that is alot of emails!"???

Hematologist:

Last week, I saw the hematologist (aka The Vampire Doctor, according to my four-year-old). AMAZING guy. Smart, compassionate, caring, good listener (probably a survival skill). And attractive, which helps any situation.

Anyway, I was scheduled to see him because my white cells weren't rebounding as they should (and I'm now on injections for that, plus acupuncture). He was very interested in why I have had two cancers in three years. In my mind, I file that under "Stuff happens", and figure that I am just lucky that it was found. But it is nice that someone is looking at that.

He recommended about 10 million blood tests, which I got. He was so great that I agreed to anything he said. By the end, I even agreed that he could take bone marrow and bone, but that is another day.

Of course, the blood draw was not uneventful. I hate blood draws, and the first nurse started out by saying, "Wow, he wants alot of blood." Then, seeing I was nervous, said, "It's just a blood draw!" Okay, not the nurse for me. I basically staged a sit-in until my regular chemo nurse could come and draw my blood.

Some results came in, and I'll hear about the rest soon. So far, so good; the two major ones:
White blood cell count was high. Yay.
Red blood cells -- well, I'm anemic, but no surprise there. That is how we found the whole cancer thing to begin with. More pills to remedy this. And the acupuncturist recommends "bone soup."

I kind of prefer the Chinese doctors who can look at your tongue, take your pulse, and know everything there is to know. But, I still go the Western med route as well....

Hard parts:
Taking so many pills. As someone who didn't take an aspirin or Tylenol before all this started, I am having trouble adjusting to that.

Other hard part: Really believing that this treatment will work. I am low-risk for this kind of cancer in the first place, so why should this treatment work? My chemo nurse assures me that those are completely disconnected events: It doesn't matter if you were supposed to get this or not, the treatment is for what you actually have. So, since I don't really have much else to hang my hat on, I'll hang it on that. And that logic makes sense to the logical part of me.

Other than that:

It has been a great week. Energy level was awesome. Randy, you were right that I would be able to roughhouse with the kids and lift them again. I didn't get to do e-mail as much as I would have liked, but that is true in general.

You know how you get a song stuck in your head and it can drive you nuts? The lyrics weren't so bad, except that it made me crazy to not be able to figure out the song. See if you can do it:

The blues they sent to meet me won't defeat me
It won't be long till happiness steps up to greet me.

Not bad lyrics, but I couldn't name that tune. To try and get it out of my head, my four-year-old advised that I sing Twinkle Twinkle or hum something from the Nutcracker. Yes, he is really learning alot at his supercalifrangelistic school -- I wish I could even THINK of something from the Nutcracker! But, not bad lyrics to have swirling around.


Post Chemo:

I can feel the neuropathy starting so I'll type fast. Chemo went pretty well today, pretty smoothly, no real stress. Because of my blood counts being funky, the doctor recommends three months of chemo (rather than two) because they are afraid that the radiation will drop the counts too low to do chemo later. I'm kind of relieved to put the radiation off as long as possible.

On other cancer fronts: Next Monday, I have a mammogram. Wish me luck!

Much love to all of you and thank you for your support. I don't really know how to express my gratitude but I hope to find a way.
Marie

Chemo #2: Feeling sorry for myself

This became MUCH longer than I anticipated -- the bottom line is -- had chemo, full dose, went pretty well but just a bit "weirder" than last time. The novelty of having chemo has definitely worn off.

-------------------------

I keep starting this message, but the neuropathy was getting me this week, making it hard to type or do alot of things. And the chemo is kind of making my thinking a bit fuzzy.

Which means....I did get chemo this week! I did three injections last week to increase my white count, and one acupuncture session, sending my white count sky high, and I was able to get chemo. Mixed blessing, of course! But, two chemo sessions down! Yes, I'm counting.

Once we found that my white blood cell count was high enough, the question on the table was: Do we reduce the dose, so that my white count doesn't drop so much, or do we go full-speed-ahead and give injections on a regular basis to make sure that my white count stays high? The doctor's recommendation was to do everything we can to continue with the full dose of chemo, so now, after I remove the continuous infusion pump, I get an injection to produce white cells. Again, give one drug, then take another to manage its side effects....

Your bone marrow produces white blood cells, specifically, the bone marrow in flat bones like your sternum or pelvis. The injections are like speed for bone marrow production, and my marrow felt like it was expanding inside my bones. It makes those bones a bit sore, feeling like I needed a really good massage, but then you know it is working. They recommend Tylenol to help with that feeling. (again, give one drug, then another for the side effects...)

The acupuncture treatment she used for generating white cells is called the Hepatitis treatment, which freaked me out until I understood what was going on. My acupuncturist is this great Japanese woman and I seriously thought something got mixed up in the translation!

So, after all that, I got hooked up with chemo. Julie, my favorite nurse in the world, was there, and some friends dropped by, which made it fun, we got to catch up, and the time passed pretty quickly.

It was pretty uneventful, though this time around, I kind of got pushed off my center and it took me awhile to return. Not really sick, just not myself, and hard to get back to where I felt like myself. So it was hard to write and things were just slightly out of
sorts.

THEN, the neuropathy set in (sort of tingly hands and feet, sensitivity to cold) and I thought, okay I can manage that.

I went to the acupuncturist and told her about it. Immediately after the session, I got some sort of major cramping in my hands and was unable to move them at all. Weird. It was kind of like having a foot cramp or Charley horse in your hands. In addition to being painful, I could look at them and think "move!" but nothing would happen. It lasted about 5 minutes. (The good news is that, later at night, I realized that the neuropathy had gone away.)

After acupuncture, I was on my way to the hospital to get the pump removed and just thinking, "I really can't do this. This is insane." and generally feeling sorry for myself. I cried all the way to the hospital. Once there, I stopped to get a burrito, still very self-absorbed. The woman behind the counter went to warm the burrito, returned, and the guy behind me ordered a burrito. I watched her take my burrito off the grill and I thought she was going to give it to me. But she gave it to him!!!! I was too self-absorbed to really say anything in time, though later, I asked her why she did that and she just shrugged. Then I went to pay for it, and they overcharged me (I did catch that one.) It was a good reminder that if I don't watch it, the downward spiral happens quickly and you have to just propel it in a new direction asap!

This is already way longer than I intended, but I'll leave you with a funny story. Last week, I was at the hospital four days in a row. I saw a sign for Orange Stickers for discounted parking, so I asked the parking woman what they were for. In a sort of annoyed voice, she said, "They are for chemo patients."

"I'm a chemo patient!" Yes, I'm not above taking the perks.

But apparently, my response was said a bit too brightly, because she said, "Chemo patients who are here four or more days a week."

"I am here four or more days a week." Okay, not all for chemo, but it is all chemo-related.

"Get a note from your nurse. Next."

So I guess I still look okay!

Oh, and the nurse, instead of giving me a note, told me that I could do the injections myself at home (HA!) and offered me her daughter as a babysitter (okay - that part was a good deal!)

Thanks for hanging in there with me, for checking in and for all the support. It carries me through this in so many ways.

Love, Marie

Chemo today -- NOT

Hello and Happy New Year!

Thank you for your good wishes for my New Year's chemo today. There were interminable waits at the hospital, but it was a really good day, and I got to visit with lots of friends.

But the chemo itself didn't happen. Felt a bit like a snow day -- fun, but I know that I have to make up for it before the end.

Turns out that my white blood cell count was too low, so I will get some shots to bring it up, and hopefully it will be high enough next week to get chemo. I can't believe I actually WANT to get chemo, but I do want it to do its thing so I can move on with life.

This also buys me a trip to the hematologist, to figure out why the count is already so low.

One of the things I find most -- hmmm --- interesting? -- about all this is -- you take one medication, which then has side effects, so you take another for the side effects. But, nothing is for free, right? So, THAT has side effects...so you take another medication... and so on. Strange for me; before this, food was truly my only form of medicine.

I like this explanation that the nurse gave me: They give the highest dose of chemo that they think you can tolerate. But it isn't one size fits all, so this is part of tailoring what the right dose is.

And, I feel really good, which makes day-to-day life more fun, of course.

Managing all this uncertainty with the kids is tricky but going okay. We are all learning as we go.

Thank you again for your support. It really makes a huge difference and means the world.

Next chemo is now scheduled for next Tuesday.

Whether you are near or far, your prayers and positive energy are making such a difference, and that is most appreciated moment-by-moment. Thank you!

Ciao for now,
Marie