Friday, January 25, 2008

More drugs

Well, today I visited with the onc (love her!) and picked up four new prescriptions. For a gal who does not enjoy taking drugs, this is a bit disheartening.

To my current list of:
aromatase inhibitor
thyroid hormone replacement
anti-depressant

I'm adding:
Bisphosphenate (bone density builder)
Nerve pain drug (to help with hot flashes - another usage)
Sleep aid (because I wake up more than I can count each night and I'm exhausted as a result)
Antibiotic (for my sinus infection)

Plus, I need more vitamin D, in addition to all of the calcium I'm taking

With each drug, comes side effects. These can range from the barely noticeable to the miserable to the lethal. No trick guessing what I'm hoping for in that regard! Suffice it to say that I've held off for a long time on adding new drugs to my regimen, but it's time.

Two and a half years out, and this is what I'm doing. Wow. "Over" isn't in my vocabulary.

And I got a referral to another plastic surgeon to look at corrections. I'm not sure when I'll follow up, but eventually I will. I do not want to look like this forever.

Additional notes:
My CEA, CA 125 and CA 27.29 (all cancer markers) came back with all of the correct results: no evidence of disease or progression today. Excellent news.

Dr. Rinn suggests that I avoid further scans, as research shows that at this point they're not of much value to me. (Girls, get your mammograms. Don't forget that my boobs don't have real breast tissue, so mammograms aren't for me....but they ARE for you!) I'm relieved. The scans make me totally freak out, and studies show that, at my stage of treatment, they don't even prolong life, so forget about it. Needless to say, if I present with symptoms, I'll get scans, but I can avoid routine scans now.

(This is not quackery or hiding my head in the sand. The evidence is well documented in large studies presented in adjudicated medical journals. I promise.)

Additionally, I'm learning that bisphosphonates are often used to prevent and treat bone mets, and that some clinical trials are showing them to be excellent at preventing or halting the progression of bone mets. I'm doing the bone strengtheners because of issues with osteoporosis, but I'm delighted that additionally they may fend off the beast.

Thursday, January 24, 2008

Follow up from last night's post

Here is the post I put on YSC today. I'm struggling with these questions. Anyone have answers for me?
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So there I am, going along my merry way, 2.5 years NED, and these stupid thoughts are still driving me.

This year, my daughter turned 5 (yesterday). I threw her three parties (two down, one to go). First, a family party with family and family friends (a pool party); then, a PEPS party (a group we belong to with 7 families; we met when our kids were newborns and are very close); then, a "girlfriends" party with five of her best friends (that one will have traditional birthday games, a pinata, etc.). It's a bit much - heck, as a kid I didn't count on ONE birthday party, and my kid thinks that three is perfectly normal.

So as I was cleaning up last night after party number two, I was feeling exhausted and wondering why the hell we went so overboard.

The answer struck me with complete clarity: if I won't get to see her 16th birthday party, at least I can throw her 16 parties. If I'm going to die, then I better give her every bit of love and adoration and "special" time possible before I go.

What the hell? I thought I was just having a good time with my child, and suddenly it occurs to me that I'm living my life as if I don't have much time left. When did that start? Am I still leading my life as a cancer victim, and not a survivor?

I really thought I was further along than this. It's so frustrating to find myself really stuck in these thoughts when I thought I was more at peace. Anyone else? How do I move on? What's your advice? Or is anyone struggling like this with me?

I'm two and a half years out. Why is this taking so long? (stamps foot)

Wednesday, January 23, 2008

At the end of the day

At the end of each day, my sinus headaches rage and I feel overwhelmed. This has gone on for a week - may be time for a trip to the doc. I hate visiting doctors; I feel that my time in waiting rooms is such a waste, and I've already wasted so much time.

Tonight I'm particularly tired because it was Tessa's party. I hung streamers, blew up balloons, made two cakes (chocolate bundt cake with chocolate glaze; and chocolate layer cake with raspberry vanilla frosting), cleaned, tidied, and tried to give Tessa a great day. Now her friends (and mine!) are gone, and the house is coming back to itself, and the toys are put away.

Tonight, it occurs to me that I am overdoing it because a) that's what I do but also b) because if I die, I want Tessa to remember how much her mama was willing to do for her. I want her to remember her time with me as magical.

I am not planning my death, but it does seem that I feel extra pressure to do things "just in case." This year we're throwing her three birthday parties, and that's excessive. Unless I think that I'll miss most of the parties in her life. And yet, I do feel healthy, and mostly optimistic about the future, so this doesn't make any sense. Time for another trip to the therapist.

But first, a Motrin, and then bed.

Happy birthday, sweet girl






As I write this, my five year old is playing "pony set up" with Anna, happy as a clam. I'm hearing their creative imaginings as they contrive elaborate stories about good ponies and mean ponies and all that they do, and Tessa is in heaven about it all.


Five years ago, at this time, I was lying in a hospital bed at Swedish, holding Ryan's hand, talking to Susan & Libby, and looking at my huge belly and wondering how a baby would ever emerge from my body. (Even having experienced giving birth, I still find it somewhat confusing that it's even possible...but that's another post.) I was filled with excitement and anticipation, and couldn't even imagine what it would be like to hold my child in my arms, but I knew that it was what I wanted more than I'd ever wanted anything in my life.


At 4:08pm on this day five years ago, when Tessa took her first breath, Ryan softly said, "It's Tessa!" and I learned that I had a daughter. I can still barely believe my good fortune of that moment: I've said it before, and I'll say it again...I would have adored a son, but I had always wanted a daughter. Tessa truly is the child I spent my lifetime dreaming about. She is all I have ever wished for, and more. In my dreams, I never understood just how much I could love a child, but Tessa has taught me.


In these first five years together, as a family, we have experienced so much. There have been more joys than I can count, along with (more than?) our share of sorrow. Throughout it all, Tessa has been the glue that held us together.


Ryan is the father I hoped he would be. He is funny, strong, and encouraging of his daughter. Tessa, needless to say, adores him. When I watch my husband and child play together, I know that I gave Tessa the best gift of all by choosing such an amazing father for her, and my heart is filled with the two of them.


Today, as I bake cakes, hang streamers, and prepare for the PEPS gang to come over, I do it with gladness. Sure, I'm trying to give Tessa a fabulous birthday, but it's also my own celebration. Five years of being a family; five years of learning how deeply we can love one another; five years of talking about the beauty of dewdrops and how much fun it is to go on the swings and petting every dog that walks by us. Five years of childhood magic, even in the middle of temper tantrums and messes and billions of loads of laundry. It is more worth it than I ever imagined.


Happy birthday, Tessa. I love you, sweetheart. Thank you for being you!

Monday, January 21, 2008

Just a cold, but still...

Two years ago at this time I was fighting radiation burns. I was bald from chemo. I was 40 pounds overweight from steroids etc. with chemo. I think it would be fair to say that I was miserable, and that I am so, so glad that I am no longer in that horrible position.

Today, I still have a cold, and it may be turning into a sinus infection. It feels ridiculous to make a big deal out of a cold, when I have endured so much worse, but really, it's not fun to have a cold. It's a molehill, not a mountain, but it's my molehill, and it's a pain.

I still judge just about everything in my life by the cancer yardstick, and this is no exception. A cold is pretty manageable compared to cancer, and it's nothing I can't live with (after all, it doesn't threaten to kill me). I suspect that for the rest of my life, everything will be compared with cancer, for better or for worse, and this fact saddens me (I'm certainly not over it). I wish I could just moan about my cold and accept it for what it is, without the comparison. Why this is difficult for me, I am not certain.

Perhaps the cold is even more frustrating because I fought cancer. Do I have to fight a freakin' cold, too? No fair! I almost laugh that I'm protesting the fairness of a cold, because I don't recall asking "why me?" about cancer (and I even wrote a post about that early on, about "why me" isn't something I think about). I guess I'm a late bloomer in this regard, because my cold is really irritating me. I've had it for a week, it's not getting better, and I'm tired when I have things I ought to be doing. (The Komen work has a huge chunk done but SO much more to do.)

And I want to be a playful mom for Tessa's birthday week. And there are dozens of cupcakes to make....

One day at a time....one day at a time.... It's just a cold. I can deal with this. I've dealt with worse.

Wah.

(But I have been having good times, too, despite my current whininess. Heather watched Tessa today so I could work on Komen, and then we visited and had dinner together. Lovely times. And yesterday's pool party was fabulous. But my sinus headache keeps coming back. Wah.)

Sunday, January 20, 2008

Pictures!




Here are some of the latest. With all these birthday parties, there are sure to be more soon.

Five years

This week, Tessa turns five.

I find this fact somewhat bewildering. How on earth is it possible that she's so big? When she was an infant, I was so overwhelmed by the largeness of her tinyness; when she was a toddler I thought maybe she'd stay that way forever. But time marches on, and I find myself the mother of a precocious pre-kindergartener. I wouldn't change it, but I'm bewildered anyway.

This is a week of birthday: today is the family party at the pool; this Wednesday we'll have PEPS at our house to celebrate; and on Sunday she's having a few very close girlfriends over for her "girl party" (she really IS my daughter!). Yesterday she and I made chocolate cakes together, and today we frosted them with rasperry icing (home made; the raspberry tastes good but best of all it makes the frosting pink) and Tessa was in charge of putting on the sprinkles.

I will try to love every celebration, and not get caught up in my "to-do" lists for each party. I will remember that it's about the joy of her birth, about the celebration of her life, about the relationships she shares with others. I will try to remember that it's okay if the food's not perfect, if somebody gets sick and can't come, if our parties aren't as extravagent as others'. I will try to remember to laugh, and to share Tessa's pleasure at the small things: a balloon that's just the right color; putting up streamers.

Happy birthday, Tessa. I love you!