Imagine

Treatment #3 is underway and (so far) going smoothly. No crazy blood-thirsty nurses; no Benadryl overdoses (it's juuust right!); no impulsive "I love you man's" directed at my wonderful caregivers. Just a routine day in the medical oncology treatment room. Ho-hum!

Warren and Bruce just left, they came up to have lunch with me and shoot the breeze a little bit. It does get boring being here for 6 hours, despite the fact that I bring enough stuff with me they think I'm moving in for a week (laptop, work, book, magazines, iPod, blanket, pillow, cell phones, lunch bag, etc.).

I sit here, halfway listening in to the conversations in adjoining cubbies (we are only separated by a curtain). My neigbor and a member of the housekeeping staff started the day with an animated conversation about the election of Barack Obama and the upcoming inauguration. The woman sounds elderly, and she seemed honored to have been able to witness an historical moment (and also pleased as punch that one of her family members will be attending the inauguration). Another conversation involved a nurse explaining the "do's and don'ts" of chemo to a new patient and his wife. As she cautioned against sexual relations in the first 48 hours after treatment, the wife piped up that they didn't need to worry about THAT - her husband wasn't even capable of lifting a spoon, much less lifting...well, you get the picture. The nurse gamely listened, insisted she didn't need to know the details, and tried to move on but the wife was insistent on sharing so that the nurse could be reassured that no sex wasn't going to be a problem. I can only imagine what my neighbors think about my own conversations (especially my Benadryl moments)!

Christmas was bittersweet. I loved watching the kids open their gifts, but I was still fighting the effects of a cold and had not quite the energy I would have liked (in fact, we missed Christmas Eve mass because of my fatigue). I loved having my whole family there, but got a little nauseated from the smell of cigarette smoke (my sister and brother-in-law smoke quite a bit, and although they don't smoke in my house, their clothes and gifts fairly reek of it). And I loved spending the day after Christmas with my in-laws (my brother-in-law Glenn hugged me so tightly on my arrival, not wanting to let go, wanting to make sure I knew how he was feeling without having to say so), but spent a good part of the drive home feeling sad about the prospect of these family get-togethers taking place without me.

It's interesting how hard it is to imagine a world without me in it. I think of family and friends who have died (Vinnie and my mother in particular) and although I miss them terribly and think of them almost daily, I see that the world has gone on. I see that while grief and sadness are inevitable after a loved one dies, so is joy and happiness. It's not just about leaving Taryn and Warren and Emily and Ian and all the changes that implies. What happens on Christmas when I'm gone? Does Bruce come over the house still, or does he spend it at home or in the bar? Does Glenn silently wonder what it would have been like if I were there? What happens during the year? Are vacation plans made? Do birthday parties happen? Are bills paid? On time? There are many things I can imagine, but me not being in the world is not one of them. I know that sounds narcissistic, but I suspect it is a rather universal feeling among those of us facing uncertainty in the future (which, when you get right down to it, is all of us).

So I try to reflect upon the things I have been lucky enough to enjoy these past 14 or so years since cancer took up permanent residence in my life. At various moments I didn't think I'd live long enough for Taryn to remember me (she was only 3 at the time of my first diagnosis), or long enough to meet and marry my best friend, or long enough to see Taryn's 13th birthday, or long enough to see Emily and Ian happy, or long enough to see all three of them graduate high school and go to college. And I continue to try to imagine the world WITH me in - my upcoming 50th birthday (GALAGANZA!); the kids graduating college, getting married, having children; retirement to North Carolina; new shoes on a regular basis. Magical thinking maybe (well, except for the shoes, that WILL happen) - but what is a world without magic anyhow?

Blessings and Love to All.

Crush With Eyeliner

I figure by now you all must be ready to handle the dome, so here it is. Admit it, that's a NICE head (and it's not even airbrushed!).

The time has come to put down the mascara wand and step slowly away from the make-up table. My eyelashes have just about completed their exodus, such that using mascara results in a weird kind of "Clockwork Orange" look (and here I thought "volume building" mascara could make 3 lashes look like 300). The Clinique employees are all crying, they know that without me purchasing mascara there will be no bonuses this year.

In many ways, no eyelashes is worse than no hair (and not just because I can't wear mascara). It's harder to put in my contacts - those of you that wear them, think about how you put them in. There's nothing to protect your eyes from sunlight and dust and gunk - plus, they get all rheumy, especially overnight. And let's not even go into the whole looking like an alien thing. False eyelashes you say? Not for me, I don't have the patience to put them on correctly. So, I pile on the eyeliner and eyeshadow instead (hey, maybe those Clinique employees have some hope after all) and thank God I don't need to bat my eyelashes at anyone!

It's almost New Year's Eve - what is your New Year's resolution going to be?

Doctor, Doctor

Monday's doctor visit was relatively routine (well, as routine as a visit to the oncologist can get!) - discussion about how I'm handling treatment, any side effects, what my mood is like, a cursory physical examination. She remarks that she will do the next treatment on the 30th (next Tuesday) and then 2 weeks after that do the PET Scan and CT Scan to determine how much more (if any) chemo to give. Bells and whistles go off - PET Scan? Last time we spoke it was only going to be the CT of the jaw; now she wants a whole body PET. Further questioning reveals that she is concerned about my tumor markers, which still seemed high after the first treatment. She says she will do blood work next Tuesday and see where I'm at - she'd like to see the markers at least stabilize if not go down.

I leave her office and the thoughts spiral WAY out of control: The chemo isn't working; the PET will show more spots; this is the beginning of "The End". All this stomach-churning, dizzying conjecture despite evidence and knowledge to the contrary - my jaw hasn't hurt in many weeks (she believes chemo is shrinking the tumor); the PET 3 months ago showed nothing other than the jaw tumor (what do I really think has changed?); she has shown no new sense of urgency regarding the findings, in fact delayed the CT Scan (she was originally going to do it this week). There is no reason for my level of agitation to increase like this. And THIS is what drives me crazy sometimes, what challenges my ability to stay positive, what makes me feel so completely and utterly ALONE, this downright mean unraveling of my present and pulverizing of my future.

I drive home from the doctor's office, breathing...breathing...breathing...until I arrive back at "today" and remember that there is nothing I can do that I am not already doing to regain my health and prolong my life and maintain my composure and enjoy the time I have with all those I love and cherish. Peace descends upon my mind. For now.

It is Christmas Eve and I anticipate with pleasure, as I have for 17 years now, Taryn opening her gifts tomorrow morning and squealing with delight. It is as joyful today as it was when she was young and I thank God again for the privilege of being her mother.

Blessings to all on this most holy of nights and may Jesus fill your hearts as Santa fills your stockings!

Girls Talk

One by one we make our way to the restaurant we've chosen to gather in for the evening. We greet each other with hugs, with kisses, with admiration for our outfits/ boots/ hairstyle/ earrings. We order a glass of wine. We exchange gifts - some birthdays have been missed, and some have brought small holiday trinkets for all. We share stories about work (and looking for work); about our children (growing up so fast, how did we become parents of a 17-year-old? A 15-year-old? A 12-year-old? A 10-year-old?); our spouses (love them, love their crazy ways); our holiday plans. We debate the wisdom of the auto industry bailout; we confess our love for "The Amazing Race" and People magazine. We order another glass of wine (after all, we are not driving - this is New York City!). We laugh about how our daughters (and our sons sometimes too) are so label conscious ("She wants Coach and Juicy Couture"), but we are grateful that we can still provide some of what they want, and we are proud that despite our spoiling them they are still compassionate and loving with an awareness of the fact that others are not so fortunate. We talk politics, but refrain from intense debate among this gathering of both liberals and conservatives. We share our favorite authors and recommend books we think each other will enjoy. We talk about the past, we talk about the present, we talk about the future. We eat heartily (fish for everyone else and meat for me!) and we don't skip dessert.

What we also don't do is spend an inordinate amount of time talking about cancer. For three some-odd hours, I am just one participant in the ritual of Girls' Night Out (Holiday Edition), one of six (although it's usually seven - you were missed Patti) and I get to enjoy these amazing women with intriguing life stories, astonishing strength, bold ideas, unique perspectives and wonderful senses of humor. I am by turns melancholy (what will these nights be like when I am no longer there?) and uplifted (how fulfilling to have friendships such as these), looking forward to our next get-together, and hoping there will be many more.

Patty, Mary, Jackie, Elisa and Mary - you rock! Thanks for a GREAT evening.

Oh Christmas Tree

This is a photo of my hot, young, blond, sexy niece "JonnaLee." Ha! Fooled you, it's really me, in my new "cranial prosthesis." (And those of you that were taken in, get some glasses, please!) I admit, I'm still getting used to it, but the reaction so far has been mostly positive. Either that, or it's like on the Sopranos, when Tony thought he was funny, and then realizes that people just laugh at his jokes because he's the boss. You all may just be telling me it looks good so as not to distress me further. If so, let me assure you...you're doing the right thing!

The cumulative effects of chemo are beginning to be apparent. While I feel quite well, I can tell that my energy level is not quite the same as it was at this point last time after chemo. It's subtle, but detectable to me, although maybe not apparent to everyone else. That is probably because, as far as I can tell, my mood has rebounded in about the same time frame as last time, maybe even a little quicker (no post-weekend meltdowns this time...Chris is relieved!), perhaps helped along by the fact that my favorite holiday is approaching (no, not my birthday, you sillies..by the second most celebrated birthday of the year - Jesus's!).

We are having our tree-trimming party today, an annual affair that involves inviting family, friends and neighbors over to hang the gazillion and one ornaments I have on our two trees (one real tree and one artificial tree that we had when we were trapped in the Residence Inn for Christmas). It is one of our family rituals, beginning with the youngest person hanging the first ornament, going on up to the oldest, and finishing with a free-for-all with all the remaining ornaments (I have almost as many ornaments as I have shoes). Did I mention that I take a picture of each person hanging their ornament as well? And a group picture at the end? And that it takes about 2 hours to get it all done? Although, it would probably go quicker if there weren't so many cocktail breaks, which by the way, I am unfortunately excluded from this year, at which revelation I hear my guests shouting, "Yay, more for us!" So, who wants to join us next year? Show of hands please!

Taryn and Ian take off work for this. Emily comes home from college for this. Friends train in and drive in from the city and beyond (sometimes they even fly in). My brother helps me pick out the perfect tree and he and Warren meticulously put the lights on it for beautiful effect. My sister and brother-in-law and uncle and stepdad never fail to participate. This is one of those rituals that will last long after I am gone, I realize. Maybe not in exactly the same way (although I am willing to leave detailed instructions if need be), but it has turned out to be an important, joyful event in all our lives.

And at the end of the day, when everyone has gone home, I turn out the house lights and gaze at the twinkling tree, branches heavy with my many memories, and I am grateful for this day, for these people, for this life.

Shouts outs this week: Glenn and Sharon (I have a nice warm head!); Trish (I'm still laughing at your stories - start a blog, please!); Stephane and Naomi (who was late to her birthday party just so she could make sure I knew she was thinking of me); Jim and Vicky (you should know we've been calling it "Vickyfruit" each time we have some with dinner); Jim S. (thanks for reaching out...and for enjoying the hockey fights with me!); Tim H. (the pecker is UP!); and finally, Chris (there is not enough space to describe all the reasons you deserve a shout out this week - just know that I am thankful you've been in my life these past 26+ years).

Deck the halls and fa la la la la!

Apologize

At one point on Saturday evening, I looked at the clock and sorrowfully moaned to Warren and Chris, "It's only 5:00." The time between when I start feeling badly and when I start feeling better seems interminable, although it is typically less than 48 hours. It is a joyless time, for me and for those around me - I can see how painful it is for my family to see me weak, tearful, hurting, at a loss to stop the depressing thoughts swirling around in my head. I am sure there are secret tears that I don't see and I want to say to them over and over "I'm sorry, I'm sorry, I'm sorry" for bringing this misery down upon them.

It is just wrong that I should be held tightly by my 17-year-old daughter while I weep, she tenderly stroking my back, kissing my cheek, whispering that she loves me and telling me to stop apologizing. It is wrong that my husband and Taryn's dad should stand by helplessly while I pace the living room floor screaming, "This is stupid! It's stupid to go through this a third time! It's better to die!" It is wrong that the fallout from this illness filters out to so many, much like (here's some irony) a tumor spiders out as it grows.

I can see why people get to a point where they say "Enough." It is not because we are not strong, or because we have lost hope, or because there are no options left (although I'm sure that is true sometimes). I think it is because we want to stop the suffering felt by our loved ones; we want them to start healing and stop hurting. And while it is true that I am a long way from "enough," I can understand how it is one arrives there.

Forty-eight hours have come and gone. Depression fades. Amnesia sets in. Smiles begin. But I need to share all of this journey and so I will apologize to you as I have (rightly or wrong) apologized to everyone this weekend - I'm sorry this has to be part of your life too.

The Most Beautiful Girl in the World

You just know it's going to be a fun day when your nurse, inserting the IV in your arm, says "Oops, we got a little bloodbath here."

Currently, I am at my second chemo treatment. The aforementioned nurse, adorable and perky, is actually quite competent and very funny (one of my diva requirements for treatment). After I laughed and noted, "Gee, that's what every patient likes to hear, she went on to say, "Yeah, that and words like 'massacre' and 'we've got a bleeder here'." Not to worry, I clean up nicely and we continued on. I did warn her about my tendency to get mushy about my nurses when the Benadryl kicks in - she called the doctor and got my dosage halved (only sort of kidding there - I had asked for a lower dose when I saw my doctor on Monday. No one needs THAT much of a good time at chemo). All in all, we are progressing and by 4:00 pm or so I should be well on my way to fatigue and depression - yay!

This (see picture) I call "Transition Hair," a sort of way station between my real hair and the wig I now sport. Yeah, I know I look a little scary (Warren kept making me laugh) - but it worked well for a few days (no piles of hair all over the place) until I could pick up my wig yesterday. But that's a "teaser" for the next post, a sort of cliffhanger although instead of "Who Shot J.R.?" or "Will House and Cuddy ever get together?" it's "What does DonnaLee look like in her new 'do?" I will say this: Cost for new wig - $700. Cost to style new wig - $50. Cost for hair products for new wig - $35. Seeing Taryn's glowing smile and hearing her excitedly exclaim, "You're so pretty Mommy!" - priceless. She made me feel like...well, the title says it all.

There was a great My Turn essay in Newsweek this week called "The Picture of Health" by Kim Lute. In it, she describes 13+ years of illnesses and procedures, hospitals and ambulances, transplants and maintenance drugs, all to stay alive with the various and sundry diseases she has been diagnosed with. She argues that although she is conventionally described as "unhealthy," her circumstances really reflect the life of a healthy person and that perhaps health needs to be redefined. While doctors see her "relative to a set of finite radiology or pathology reports," while neighbors see her as "wan" and fragile, she sees herself thus: "I see a body that heals quickly after trauma, one that mercifully forgets the pain of biopsies, surgeries and colonoscopies, one that remembers its strengths." She finishes with a wonderful observation that really spoke to me: "I understand that many will not see me as healthy, that they'll continue to punctuate every inquiry with condolences. I'm not even sure how best to redefine the concept of what is and isn't healthy, but I hope any such definition will underscore that the presence of illness isn't nearly as important as one's ability to overcome it." I couldn't have said it better!

Still fighting the good fight - blessings and love to all.