Tuesday, June 24, 2008

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.

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.

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.

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

Tuesday, June 10, 2008

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