Sunday, May 30, 2010

The Sweet Days of Chemo

Exactly eleven days ago, I had my first cycle of chemo. I sat in a leather recliner for four hours at the Hubert Humphrey Cancer Center while a power port infusion tube protruded smartly from the perfectly accommodating neckline of the perfectly accommodating business sweater I had chosen to wear. I felt OK. I laughed, I joked, I marveled at my accommodations which included wireless internet for my iPad – an extremely thoughtful early birthday gift from an extremely dear friend-- television, free movies and free cookies. (Yes. Free cookies. Score.)

Anyway, during those four hours I was lucky to have a good friend at my side who was the perfect chemo companion. Although we had never really been through the experience of chemo, either together or individually, we hit a very nice balance between talk and silence, cheering and just being, normalcy and realizing that this was anything but a normal day.

Time passed rather quickly. As each oncology nurse came by to administer another bag of something or other, my friend and I would just nod and recite our new mantra: “One bag at a time”. That is how my life is being measured now: one bag at a time.

The days after Cycle One remind me of the days when I used to run long distances. Every footstep is a confirmation that you're either doing great or it's time to walk a bit; time for a water break, or time to try to take your mind off the pounding your body is taking by talking to the person slogging along next to you. You have miles where you feel fresh, miles where you slog through based on sheer force of will, and miles where you suddenly get a second wind and you know you will reach the finish line. But you never quit. You just keep trying to push through so you can say "I finished". The only difference with chemo is that you have to keep doing this same race over the course of twenty weeks and they have free cookies at the water stops.

As of eleven days ago, I am no longer a chemo-newbie. The acute symptoms and acute fear of those first few days have been logged on my chemo odometer and I’m ready for the next cycle. These are the sweet days of chemo because I am feeling good. Which is to say that I can almost pretend I’m not going through this and life is temporarily back to normal. And strangely, I am happy.

In three days, I go back to the chair, the ice chips and the free cookies and another cycle of hoping that I will get myself back again soon.

Thursday, May 27, 2010

The Ten Commandments of Chemo

Having just gone through my first cycle of chemo, I was thrown off track a little. Now that I have recovered my equilibrium (a little chemo joke…), I feel like I know what to expect and what to avoid. Here are my ten commandments for getting through the next eighteen weeks:

1. I Shall Maintain My Roots. The first cycle of chemo caught me with skunk stripes and badly in need of a haircut. For some reason, I started thinking “it’s just going to fall out anyway”. Wrong! I impulsively went to a new salon last night and got my hair cut and colored. I am a registered hothouse flower and chemically-processed girl. My body needs these chemicals just as much as chemo, maybe more. In other words, as long as I have hair, I’m gonna take care of it.

2. I Shall Not Worry About the Wind in My Hair. Hey, if I still have hair at the end of this I will count my blessings AND roll down my windows. This includes riding around in wind, rain or fog with my sunroof open. Nuff said.

3. I Shall Soak Up Every Ounce of Life that Life Can Offer. A little while ago I finished cleaning my house. I did this after a long, tough day at work and it made me profoundly happy. While I wasn’t skipping around the living room in a French maid’s outfit humming to myself, there was something so honorable about being able to clean my own house and take pleasure in doing so. That I did it after a truly awful day at work helped me add balance to the day. That I was able to do it at all made me feel “in control” – one of the first things to fly out the window when you are diagnosed with breast cancer.

4. I Shall Just “Go With It”. Being diagnosed with breast cancer is a lot like being kidnapped. At first, there is shock and disbelief and denial. You fight and resist and try to get away. You hope that your experience in Breast Cancerland and the decisions you will need to make will be short and sweet. And then it happens: you join the club. You get a lot of things thrown at you quickly and you have to adjust. Just like Stockholm Syndrome bonds a kidnap victim to their captor, breast cancer starts to seem “normal” and you adjust to the ride. Words that were unspeakable weeks before – words like “biopsy”, “port”, “mastectomy”, “reconstruction” slip out of your mouth like nothing. No reaction, just the facts. I told my Mom that sometimes I feel like I’ve become the breast cancer equivalent of Patty Hearst: one day I’m minding my own business living my life and the next day I’m holding a machine gun in a hospital. I’m wearing a beret and the doctors are calling me “Tonya” as I demand a biopsy, several lumpectomies and a power port.

5. I Shall Respect My Chemo Cravings and Indulge Them. Since my first cycle of chemo, I have had some really weird cravings. A friend of mine remarked that the chemo might have disturbed my “cellular memory”. While good cells and bad are being killed by the chemo, the "day after" shot of neulastin creates new baby cells which are still crawling and trying to figure things out. My body is now a mix of ancient cells and new ones. It's like dusting under the bed after 54 years. All my stuff is now free-floating around in there and just trying to figure out what it really wants for lunch. Some of my recent cravings have included:

a. An urge to make oatmeal raisin cookes. I haven’t made cookies since 1985.
b. A sudden impulse to buy wacky-looking-but-sensible shoes (“Wolkys”). Have you seen these? I love mine but every time I wear them I feel the need to say “I like MEN. Really I do.”
c. Drinking V8 juice.
d. See #3, skipping around in French maid’s outfit while I clean my house.

6. I Shall Be a Mother to My Son, Always. About four days after my first chemo cycle, I bought a computer desk for my son. It was your basic $99.99 desk from Target that I had to lug home and put together. Looking back now, I realize that I needed help with every part of getting it from the store to my car to my house. After finally getting it inside, I had to assemble it in stages (I think it was all of six pieces) because it seemed very exhausting at the time. Once I finished, I set it in his room, all ready with his new computer. Every night for a week I would just open the door and look at it, so happy and proud that it was done and complete and ready for him. In retrospect, this behavior seems a little strange to me. But I realize now that no matter how old Sam is (he’s 20 now), I will always be his Mommy. And I can’t think of anything more essential or true or necessary to my life force than to know that I can still take care of him in the middle of all this.

More to come...
7. I Shall Continue to Nurture Others and Let Them Nurture Me
8. I Shall Enjoy My Good Days (and Bear Up Under My Bad Days)
9. I Shall Keep My Sense of Humor
10. I Shall Remember How Lucky I Am, Always

Grace, Humor and a New Room Service Button

It’s been a while since I’ve blogged. Isn’t it funny how I still feel guilty about my inconsistency in blogging? I mean, it’s not like I’ve been getting my nails done. (Trust me. You should see them.) Mainly, I’ve been having surgery (Two surgeries/Four weeks. Sounds like an idea for reality TV. I bet it wouldn’t be about this though. )

So here’s where I’m at. I have breast cancer. I guess the ins and outs of it don’t really matter. I spend a lot of time talking about ‘my first surgery” and “my second surgery” and what the first surgery was supposed to do that it didn’t – which was why I had the second surgery in the first place. I sometimes think that this maze of health care “dates” keeps me from thinking about the real issue. The real issue is that I have cancer and if I don’t keep making “dates” for surgeries and chemo and radiation, I might die. Honestly, I don’t think about that very much. I just try to keep going and keep “doing” which makes me feel productive. Like I’m trying to chase the cancer away through sheer activity.

The day before my last surgery I got really upset. Breast cancer is a weird thing. You can just go through your normal little life and almost forget you have it. In the early stages, you don’t look different and you don’t feel different. You go from appointment to appointment and you can kind of kid yourself into thinking that you’re OK.

I just wanted my body back. It’s like a game I play with myself sometimes when I try to imagine a different season than the one I’m in. Maybe it’s a fall day, but the sun is shining and it’s just in between warm and crisp and you can almost convince your senses that spring is just beginning. Breast cancer is a lot like that. You try to stay in a your routine (a good thing). Then you realize that you have surgery the next day, and you’ll need a few days of rest and feeling helpless and more than anything, wanting your body back without the drains or ports or steristrips. The way it was before all this happened. And suddenly, you know that fall is here and no way is it spring time. You’ll just have to deal.

I find that as I keep going down this path, things change for me. I am less afraid. The more I am exposed to, the more it becomes normal, part of my routine. Tonight, I am going for a consultation related to a “cranial prosthesis” (a wig). While I can’t even imagine having the courage to be a woman who would be proud to be without hair, I have this strange feeling I will get there. I am already thinking about what-in-the-world that journey will be like and trying to appreciate it.

I told my friend about someone I met at the Humphrey Cancer Center. It was the day I learned that I would, indeed, need chemo. Wouldn’t you know it? I was having a perfect hair day that day. The news shook me. I somehow had held out the hope that I would be different and wouldn’t need chemo. As I sat in the lab giving yet another blood sample, a woman my age came into the lab. She was dressed in casual clothes, shiny bald with a baseball cap. Our eyes met: “Is that your hair?” she said. “So far”, I said. “My hair just fell out this morning so I just went with the baseball cap”. I smiled at her and said “Well, just check back with me in four weeks. We’ll see who has hair then” and we both laughed. Although this seemed to be a horrifying glimpse into what was in store for me, I was so moved by her courage to just be “out there” being herself. I so admire that and hope that I will have the same combination of grace and humor and acceptance that she did in that moment.

I am still amazed by the support of my friends and family. In two months, I have gone from worrying about whether or not I have breast cancer to worrying about whether or not I will need a third surgery after chemo. The very idea that I was so upset about getting an IV port a few weeks ago kind of makes me laugh. I have one now and it seems like nothing. Sometimes I pretend to “infuse” a diet coke through it; sometimes I call it my “room service button”. My friends and family laugh at my bad jokes, support me when I get a dark cloud of worry over my head, and humor me incessantly -- which really is the best medicine of all.

Welcome to CancerLand

The past six weeks have been a blur. I think they call this the "emotional rollercoaster" of having been diagnosed with breast cancer (or any kind of cancer for that matter).

Difficult breasts. Six weeks ago I went and had a routine mammogram. I usually have mammograms every six to eight months or so because -- no lie -- I have been diagnosed with "difficult" breasts. (My surgeon told me this. We laughed. She didn't think they were really that difficult in person. Just on paper...). This time I had waited a little longer than usual -- about 16 months. But I hadn't felt anything unusual. It was just a routine checkup.

Ultrasound, no biggie. When I got called back for an ultrasound, I wasn't too concerned. This happened frequently after mammograms -- although it always felt like I was tempting the gods somewhat. No one wants to fly that close to the sun...

First, I cried. When the doctor clumsily told me that I needed to have a biopsy, I cried a lot. I was terrified. I had to wait 2-3 days for the results. During that time, I made every bargain I could think of with God. I vacillated between being sure I didn't have it and being sure I was a goner.

Then, I was calm. When I finally got the call, I was actually calm. I launched into project manager mode and started to think about my treatment in a "linear" way. If I could just check off the boxes -- surgery then radiation then "I am well" -- I would be fine. I insisted on using the words "early", "small", "non-differentiated" to describe my diagnosis. That kept me going for quite a while.

I had moments of intermittent terror. But the amazing kindness and outreach of friends and family really helped me -- especially through the first few weeks while I tried to get my treatment plan on track, the decisions made, the surgery scheduled. During that time, the cancer rarely made me cry. But the overwhelming kindness and caring words of friends just broke me up.

A few surprises. When I was first diagnosed, I was at Stage I. After my surgery (I had a lumpectomy) on April 6th, I was diagnosed as Stage II because of the size of the lump (2 cm) and the fact that one lymph node was involved. Originally, I thought I would be a "surgery & radiation" patient and now I find that I will most likely need chemo. Chemo doesn't seem bad at all compared to running out of "stage" numbers (there are only four: I, II, III, IV).

It's not a "check box" kind of thing. I am hoping for no more surprises, although my doctor assures me that this is the course of typical treatment: it's not a check box kind of thing. I realize that now and have realized that the ups and downs and mood swings (from uber strength to abject terror) are all part of the journey.

For my next trick. I never wanted to be here, but feel very, very lucky to be in one of CancerLand's best neighborhoods in terms of prognosis. I have gotten through surgery. For my next trick, I will try to get through chemo without being too awfully terrified. Or maybe, I will allow myself to be terrified -- which is truly terrifying.

It's amazing what scares me. It is so amazing to me the things that become clear on this journey, for example: I am more uncomfortable with asking for help from people than I am of chemo; that I am more worried about losing my hair and looking like a dope than I am about dying. It's like that statistic you hear about people being more afraid of public speaking than dying. I guess it's all about what you can actually imagine happening to you and what you can't.

Getting to know you. Tomorrow, I meet my first meeting with a Radiologist. I probably won't have radiation for several weeks/month but this will be a "baseline" visit. Next week, the real fun begins when I have my first meeting with my Oncologist. Again, I am strangely less afraid of the chemo than I am at the idea of having a "port" (for infusions). But as I say that, I realize (logically, that is) how ridiculous that is. Or maybe, as a good friend suggested, my reactions and emotions are a normal response to an abnormal situation.

A thank you to friends and family. It's difficult to truly say thank you enough to friends, family and colleagues for helping me to stay sane and laughing, during the past few weeks. I am so appreciative of the care, concern and just-plain-friendship that has been extended to me. I know it will help me through this, and it already has helped me and Sam get through this "first part".

What I can give back. The most important thing I hope I can give back to friends, male and female, is to ask them to go get a routine breast cancer screening. Make the time and just do it. Hope there is more I can pay forward as I go through this journey but hope this helps even one person...