Friday, January 30, 2009

Dream On

The dreams are vivid, and detailed and easy to interpret (at least I think so). They almost always involve some sort of journey, always on foot. Sometimes I am running, sometimes walking, sometimes searching as in last night's dream when I was trying to find my parked car and unsuccessfully traversed lot after lot, finally concluding that it couldn't be found. Sometimes I'm by myself, sometimes I'm with Taryn or Warren or some other family member, sometimes I'm with someone I don't even know (like the little African-American girl named Eufemia in last week's dream). Sometimes the place is easily recognizable, sometimes familiar but not truly known (perhaps a place in my past?), sometimes completely unknown. I never succeed in reaching whatever destination I'm seeking, always waking before that happens, feeling happy and relieved, curious as to what would happen if I DID succeed in completing the journey in my dream, grateful that I did not.

I dream of my mother a lot (although not so much lately). I am always so thrilled to see her, my heart just explodes with love (so funny when you consider the often-difficult relationship we had because of her drinking), and I want nothing more than to hug her and have her hug me. She is always happy in my dreams, and always just out of my reach - in another room that I do not have access to; up a set of stairs (major symbolism there!); in a crowd of people. But...not SO very far away that I couldn't reach her easily. Under the right circumstances.

I dreamed of Warren two nights ago. We were in a club, hanging out with friends and family. He was getting us drinks at the bar. I overheard a young woman with long strawberry blond hair talking about her new boyfriend to one of her friends, sighing that he didn't spend enough time with her, and she gestured toward Warren. I turned to look at her, and said, somewhat incredulously, "Maybe that's because he's MARRIED!" Warren came over, looked at me, and put his arm around the young woman. I asked if he loved her enough to leave me and he smiled, looked at her tenderly and said, "Yes, I guess I do." I felt sad, but resigned...he will have to move on some day.

The dreams don't upset me (usually). I think I am more intrigued than anything else - how the mind works, how our psyches serve to protect us...how Sarah Connor can be in a dream alongside my sister and Brett Favre (umm...is he a Terminator?). At least these dreams are better than the ones I had when I was in college, pumping gas for a living and tuition money - in those, people kept driving off without paying until I was short several hundred dollars on my shift. Those were the real nightmares!

Three surgeons are trying to coordinate their schedules to accommodate a patient who has very specific ideas about when she wants to submit her body to the scalpel. Ergo, no date has been set yet, although it has been narrowed down (we think) to sometime between February 19th -26th. It's going to be a busy couple of weeks.

Taryn wrote an essay for a scholarship she is applying for, just a couple of paragraphs describing what it means to her to have a mother fighting cancer, what it's been like for me and our family, what it has taught her. She concludes her essay with this amazing insight: "Cancer didn't make my mother strong, she makes cancer weak." She IS my dream come true.

Blessings and Love to All.

Friday, January 23, 2009

Build Me Up Buttercup

My head is going to explode with all the information I got yesterday from doctor visits. Let's hope I can safely impart it to you without doing any further damage to the human race. Warning: some material may be too graphic for those under 13!

First up: the endocrine surgeon, Dr. Patel (he removes the tumor). He went over some of the basics that my oncologist had already covered with respect to the chemotherapy, it's effects (or non-effects if you will) and the PET and CT results. Then we got down to the real nitty-gritty of the upcoming surgery (which will take place either the 3rd or 4th week of February - no definite date yet). They will be taking a piece of my fibula (leg) in order to fashion a new mandible and jaw, and imagine my surprise when he tells me that they won't be replacing this bone because it's not needed (apparently the tibia is what provides the ankle stability in your leg). So...it's like an appendix? I'm sort of giggling thinking of the bone just...ending halfway down my leg, then starting up again a little lower - can't wait to see x-rays of that! In any case, he tells me that the surgery takes about 10-12 hours (ooh, I hope I get anesthesia), that I will be in the hospital about a week, and that the pain will be worse in the leg than in the jaw. He also tells me I'll need a tracheotomy tube while I'm in the hospital (well, I confess, I was wondering what happens if I get a stuffy nose), but that I will be able to eat a soft diet (eggs, oatmeal, applesauce) almost right away. I'll be going home on crutches, but I should be able to get around pretty good by the time I leave. I'll be able to speak, but will need some speech therapy and I am SO looking forward to the kids making fun of me!

Best of all, he says I should be able to go back to work within 2-3 weeks, and that long-term there will be no permanent physical restrictions. I'll be able to drive, fly, swim, yoga, spin, attend graduations and parties, vacation, etc. in a very short while and I won't need any home health assistance while I'm out. Overall recovery takes 3-6 months, but the latter months are more about rehab than post-surgical problems.

Next up: the oral/maxillofacial surgeon (he rebuilds the jaw) who showed Warren and I this totally cool model of a patient that he is doing the same surgery on. It's a cast of the face and jaw in some sort of acrylic material, and he can detach the jaw and attach the mock-up of the fibula bone to show how it's reconstructed. Anatomy class was never this much fun! He gave us the gory details of the actual surgery: the incision from lip to chin, and chin to hairline; opening the flap of the cheek; replacement of the bone; what teeth will be lost (surprise, they think only 2); what to expect with respect to swelling and pain. When he was done, he sent me back to NYU for a special CT needed to make the model of my jaw. I did lobby for a facelift and botox while he was busy with my face (and wondered if he couldn't REALLY just take bone from my hips instead), but he just simpered and said I shouldn't be silly, I don't need any of that (flattering the old lady - this guy and Dr. Patel are both only about 40).

Still to Come: the plastic surgeon on Tuesday. This is the guy who is gonna nip/tuck to minimize the scarring on my face and chin and leg. Maybe HE will feel sorry for me and all I've gone through and throw in some tune-up work (c'mon! just get rid of the muffin top!).

There are still some questions left unanswered at this point - whether or not they will need to radiate afterwards (gotta see how the bone looks, but none of the scans indicate any invasion into the soft tissue); when to do the implants for the replacement of the teeth (ideally at the same time as the reconstruction, but not if radiation is needed); whether or not additional chemo is necessary or if just hormone therapy is best. I have to say though - I am feeling quite a bit better than I was about the surgery. I envisioned this completely debilitating process that would keep me out of commission for months and now I'm thinking GALAGANZA again. OK, that's not really practical, but maybe at least I'll be able to have a glass of champagne on my 50th.

What really made me feel encouraged was how both doctors kept referring to me as "young and healthy" and therefore able to tolerate surgery better and recover more quickly than most of their patients (this surgery apparently is typically done on people in their 60's and 70's). I think of all the building and re-building that's been done and will be done on my body and I'm glad that I have continued to try to exercise, stay strong, and eat right (oh FINE, have it your way, I will concede that KitKats and JellyBellies don't qualify as "eating right"). It appears that I will be able to continue on that path, and sooner than I expected.

So there you have it - the plot of the new show, "The Six Million Dollar Goddess" - "We can re-build her...make her better than ever...she'll be faster (at downing a Cosmopolitan), stronger (so she can carry more shopping bags), smarter (OK that's pushing it a little)." I'm not feeling it yet, but I'm sure nerves and fear will kick in as I get closer to the actual surgery date, and I'll need to share that apprehension with all of you. But for right now, I'm feeling pretty good, looking forward to enjoying a couple of weeks of chemo-free bliss and watching my hair grow.

A big "Hello!" to some readers new (sort of) to the blog - Joan and Dawnmarie, thank you both for listening. (Oh, and Dawnmarie I have 2 words for you - "Monkey Paw!") As an aside to everyone, I have joined Facebook, feel free to request me as a friend if you are a member, mostly because my daughter is laughing at me ("you only have 20 friends?!").

Blessings and Love to All!

Monday, January 19, 2009

It's Going to Take Some Time


No doctor visit today, but that's only because she called me Friday with the results of my PET and CT scans (sorry for not blogging sooner - the weekend just got away from me). The scans were good - in the sense that there continue to be no lesions other than the one we already know about in my jaw/mandible. The chemotherapy has apparently shrunk the tumor, but not significantly, and at least not significantly enough to postpone surgery any longer. So this Thursday, instead of getting my fourth round of chemotherapy, I will be meeting with the surgeon to discuss/schedule the surgery.

When she called Friday (and by the way, damn that caller ID!), I really feared the worst. I couldn't help but think it must be awful news, or why not wait until she sees me on Monday? And I realized afterward that we perceived the news very differently. I was relieved - things aren't worse; this is the course that was conjectured at the beginning of this whole ordeal; I wanted to get the surgery done sooner rather than later if I was going to have to have it. She was disappointed - she was hopeful that surgery might be avoided altogether, that chemo would dramatically shrink the tumor and radiation would finish the job (after all, how does one handle being an oncologist without being eternally hopeful?). She called to give me bad news - I rejoiced in the good news, and made my appointment with the surgeon. Because really - every day there is even the smallest bit of hope is a "good news" day.
While I'm thrilled not be having chemo this Thursday, I am apprehensive over the surgery, which I already know is going to be quite debilitating. I'll wait to share the details until I speak to the surgeon (who works out of NYU Medical Center) on Thursday - I don't want to trust my memories of the last time we spoke in November (Warren and I already disagree on how long he said I'd be in the hospital. I remember him saying ten days; Warren thinks he said 10-15. Either way it sucks!). I know the tumor is large enough and in difficult enough a place to make the surgery an extensive one (think taking bone from another part of my body, feeding tube, months-long recovery extensive). Anyway, more on the surgery details after Thursday.
So many questions!! How will we handle college visits with Taryn and Ian? When will I be able to return to work? What will we do for Taryn's 18th birthday at the end of March? Will Warren be able to get the bills paid on time? Will I be able to eat bagels again? And most importantly - how much of "House," "24," and "Lost" will I miss??? (Eh - don't worry, they're DVR'd and I guess I'll have plenty of downtime to catch up, right?)
The toughest part is having to leave certain things up in the air, like vacationing in North Carolina or planning my "Galaganza" since the true recovery time is unknown (could be 3 months, could be 6 months according to the doc). Everyone knows I am a CHAMPION planner, imagine my distress at having to leave things open-ended. Of course, isn't that just the story of my life now anyhow...love the irony!

I am a bandanna person. Some people (when not wearing their wigs) are baseball cap people. Some are turban people. Some are scarf people. Some just like it au naturel. Me - I am a bandanna person. I have them in just about every color imaginable, because I see no reason why I shouldn't coordinate my bandanna with whatever outfit I am wearing (photographic evidence above).
I went to yoga Wednesday and again on Saturday morning. I visited several of our neighbors with Warren Friday night, distributing honeybells and catching up. I went to dinner with my husband Saturday night, indulged in two (yes two!) Effen martinis (no, I'm not being crude - Effen is a brand of vodka, with black cherry flavor), came home and did a crazy dance to make my daughter laugh. I went to church Sunday and enjoyed Pastor Casey's sermon on how God calls us to serve. I did laundry and cleaned my home office. I rooted for the Cardinals (winners) and the Ravens (losers). I talked on the phone with Ginny and I bought Girl Scout cookies from Caralyn. I ate honeybells and I baked brownies. I had a family dinner...with the whole family. I lived life and it was great.
(P.S. I've had a few people ask how they are supposed to leave comments and I realize it is not immediately obvious. At the bottom of the post, click on the link that says "Comments." If someone has already left a comment it may say "1 comment" or "2 comments" however many there are. The linked page will have a space for comments on the right, then a password that has to be entered [don't worry, they give it to you, it's different each time, like when you're buying tickets on Ticketmaster], then you can add your name under "Open URL" - or Anonymous if you must!)

Tuesday, January 13, 2009

She's Waiting

By now, I'm pretty familiar with the routine surrounding PET scans and CT scans. I wore a pair of track pants (no zippers or rivets to interfere with the machine), a sports bra (no underwire), no jewelry, and a loose fitting top (the better to push up the sleeves when the IV is inserted). But I didn't count on the wig being a problem (hey, it's HAIR, not a helmet), and, of course (because I never do things the easy way) it turns out there are metal pieces sewn into the side of the cap. Off it came, unceremoniously placed by the tech on my prone body, like a dead ferret. On the up side, I did get compliments on my nice head after the test, although of course how mean are they going to be to the cancer patient ("Wow, you've got the ugliest head we've ever seen, and we've seen some pretty gross ones!").

So I'm (slightly) radioactive for the next 24 hours, ordered to stay away from children and pregnant women (the PET involves getting injected with a nuclear something-or-other for contrast), airports and federal buildings, while I wait for the "glow" to subside.

The scans are what will help determine the next step(s) in treatment. What they are hoping to find is that the tumor in my jaw is shrinking and that there continue to be no other lesions. When I see the doctor on Monday, she will let me know the results (and in the meantime, just in case, I am scheduled for chemo on the 22nd). Stay tuned.

As much as I try not to, my mind relentlessly and restlessly reviews the innumerable permutations of possible futures, as though there is a matrix that determines what is to come for me - "If this, then that, and it means I'll have at least this much time." And just when I think I have successfully put that kind of thinking to bed, back in it creeps. I start spending an inordinate amount of time bargaining with God for more time ("Quality of life my ass! Give me quantity any day!"), trying to make deals ("Just let me see Taryn through 2 years of college - deal or no deal?"), seeking just one more concession ("Yeah, I know I've had 14 years, can't we make it an even 20?"), and laying out my arguments for longer life ("C'mon, can you really picture Warren and Chris running the show here without me?"). What is it they say - if you want to make God laugh, tell Him your plans?

And yet, all in all, it has been a good week (well, except for that whole Giants thing - but we won't go there). The house has been de-Christmasized (yeah, a month of snowmen and angels and Santas and reindeer is more than enough). Sandra brought over some yummy soup and let me enjoy her company for a few minutes. Carol and I learned some new Facebook tricks together (thanks to Taryn). I'm feeling well, with a good amount of energy. And best of all - "24" is back on (to the consternation of our children, who call themselves "24-phans" while we are engrossed in watching Jack Bauer save the world again). Ah, the little pleasures of life.

We're up to 50 cents for a head shine - next bidder?

Tuesday, January 6, 2009

Shine On You Crazy Diamond

I am taken somewhat by surprise by my seriously low energy level this week. In fact, although I had planned all day to blog tonight, I almost blew it off, thinking that instead I would get into comfy PJ's, put on my nice warm nightcap, crawl into bed and devour my latest Newsweek magazine (ok fine, so it really would have been People magazine). But it has been a week since my treatment (and last update) so blog I must.

Because the bone pain is so bad after the Neulasta shot, I had asked my doctor for something a little stronger than Tylenol PM. She gave me a prescription for something designed "to take the edge off" (I love the terminology they use, I would have said "to blast me into the stratosphere, mumble Led Zeppelin songs incoherently and dance with fairies"). Needless to say, in true "announcer jinx" fashion, I had little to no bone pain this time around and didn't need the high octane stuff, in fact didn't even need Tylenol. Don't get me wrong, it was no picnic - major fatigue and lingering depression (complete with alternating weepiness and well...weepiness. Not much of an upside during those 48 hours). But relatively pain free. I should have known that once the weapon was in hand I wouldn't get to use it.

So I got through New Year's Day and Friday, chowing down on Diane's ziti (yum yum thank you!) and rolling around miserably on the bed when I couldn't summon the wherewithal to read or watch TV or listen to my iPod. It's gotten better since then, but I do find myself to be a bit more drained at the end of the day now than after the first two treatments. I try to remind myself that this is how it is, the cumulative effects, and that once I am all finished I will regain my strength and energy and focus. That I will once again Zumba and spin and yoga and walk to Dunkin Donuts on Saturdays with Warren. And I try to enjoy each "today" no matter how difficult because really, I've got a pretty cool life.

Good things this past week (or so): New Year's Eve (I managed to stay up!); getting my nails done (ah, normalcy); dinner with Jodi and Len and John; Caralyn S. donating her hair to Locks of Love (and she looks gorgeous!); getting to wear all my new Lia Sophia jewelry; Diane's ziti (alright, I know I already mentioned it but it was really good!); Brianna's 18th birthday; talking to Patty M.; watching the first season of "Rescue Me" on DVD (hmmm, what can we read into that I wonder?)

Bad/weird things this past week (or so): the shower chair Warren bought me (ewww, I am NOT old and infirm yet); a million commercials for GM cars (is that how you're spending the bailout money??); San Diego Chargers winning (I will NOT root for the team that knocked my Broncos out of the playoffs); my poor, overworked, worried, tense husband (hint,hint needs a Guys Night Out and/or someone to call and see how HE is doing, not how I am doing).

And finally, Dan the Man offered to shine my head for a quarter - do I hear 50 cents?

Blessings and Love to All!