Monday, November 28, 2011

The Rainbow Connection

Yesterday, I promised to take the kids to see "The Muppets," after spending much of the day curled up on the sofa watching Star Wars on SyFy network. It was a slow day. A slothy day. I haven't been feeling great with this round of chemo. Of course, there was a mix up with the oncologist and my Neulesta shot. I was told Friday that I'd get a call with the time to come in Sunday morning. Of course, they meant to say Saturday morning, and no one had called. What's the significance? Well, there are a few issues: 1) This isn't the first time there was a scheduling oversight that was chemo related. 2) The Neulesta shot, which boosts immunity to prevent infection and other complications while your resistance is as its lowest, is supposed to be administered within 24 hours of the chemo and 3) My daughter had the sniffles. So, late yesterday afternoon, just as "Return of the Jedi" was starting, I had to pile the grublings into the car to drive them to the pediatric urgent care center to spend $50 to get an ointment for my daughter's rash and to get the doctor to essentially confirm that she has the sniffles. The fun part? The rash prevents her from using hand sanitizer, as it burns, which creates some difficulty making sure she's "sterile" enough to be around me while I am going through chemo. Even more fun? She wouldn't be able to go to school the next day.

Since I'd clearly been exposed to her for hours on end, with this sniffle and rash, it seemed like it didn't matter anymore if I exposed myself to more grublings at "The Muppets," so, as planned, we went to Clearview Cinemas in Mount Kisco for the 6:45 pm show. We sat down, and, it was somewhat comforting to know that the reason the screen seemed so small isn't because I've outgrown the mystique of watching the Muppets on the big screen, but because they have slashed the screen sizes. I was pleasantly surprised by a greeting by an usher - kudos to the Mt. Kisco Cinema crew! - and the movie began.

Now, as someone tapped into pop culture, marketing, etc, I know as well as anyone that part of the reason this movie is going to be successful is that not only does it entertain kids, but it will appeal to those of us who grew up with the Muppets. It will play on our sentimentality, especially since our generation seems to still think that it was just yesterday we were watching "The Muppet Show" in our footie pajamas sitting on the floor of our living rooms on Thursday night. I anticipated being taken back to that time. I looked forward to having the feeling that I was joining my kids as one of their peers and getting lost into the magic of Jim Henson and Frank Oz.

Here's what I wasn't expecting: A complete melt down during interactions between Kermit & Miss Piggy, nor was I expecting the weeping session that followed "The Rainbow Connection."

There are certain groups of friends, brought together by various circumstances, that you envision will be cohesive, unified and together forever. High school classes, camp friends, work groups, etc. There are so many circumstances in life that bring people together, but we've all experienced those few that just "click" with us in such a way that a family is formed, rather than born, without any genetic ties. Just like The Muppets - a collection of critters and monsters from all walks of life - we assumed, as innocent children, that even long after we stopped watching The Muppets in turn to watch The Cosby Show, FRIENDS, and other shows, that they would carry one as one happy family, just for another generation. But we never imagined they'd break up. Who on earth would have ever conceived of the idea that Miss Piggy and Kermit the Frog wouldn't speak for decades?

And so, as I'm watching this clearly painful rift between Kermit and Piggy, my heart broke, thinking of friendships damaged, a family I always thought was impenetrable split, in my mind, and missing people that should still be in my life.

As if that weren't difficult enough to sit through, while the child in me was still enthralled by The Muppet Magic, those first strums of the banjo brought the water works back. Not only was I reflecting on this particular friendship, for which this song has meaning, but I started listening to the lyrics. Listening really hard. And, as I sat back in my seat, feeling the itching of my short, red wig against my scalp, feeling achy from the chemo, and getting frustrated with some of the blurriness I'd been experiencing since my last round of chemo on Friday, I realized that I wasn't sure there was still a Rainbow Connection anymore. I never thought that Kermit doubted the rainbow, but was just questioning its mystique. But, as I fight cancer, as I feel like I'm losing control, and definitely not like an innocent child anymore, I found myself questioning anything and everything magical. I was questioning hope. Can there be any? Is it worth it?

WWKD? What Would Kermit Do?

No, I was one of the lovers and the dreamers. I always was. But, wow, it was a scary moment when I started questioning the hope that I always thought was inherent in me.

Saturday, November 26, 2011

Snuggies

You know it's one of those days when you're bundled up in a Snuggie. Not to knock the Snuggie - I think it's one of those things that many of us could never imagine owning, but once we do, we "get it." Yes, it's the modern day equivalent to a moo moo, but it's like a fuzzy hug when you feel like poo.

My friend, Robyn, got me one from an online special. It has monkeys on it. And it arrived in the mail today.

It couldn't have arrived on a better day.

This round of chemo is not treating me well. First, the Aloxi reaction, then, I have to wonder, it's effectiveness was compromised by the reaction, because I've been feeling so rundown and off. I haven't been nauseous to the point that I couldn't eat - I haven't really been hungry today, though when the kids ate near me, I wanted to eat with them. But I've just been off.

So, it's been me, the Snuggie, the cats, the kids, the TV and the sofa. And I've moved maybe 3 inches all day.

Deadly sin of the day? Sloth.

Friday, November 25, 2011

Chemo Round 1 ends tonight. Chemo Round 2 starts tomorrow morning...

And that's why I'm thankful. Bizarre, isn't it? But it's one more step to beating the crap out of cancer, and moving on with my life. Every delay has meant keeping me from finishing off my chemo treatment. Which delays my reconstruction surgery. Which delays my hormone treatment. Which delays my 5-year of being safe. Which delays my ability to say that I am officially cancer-free.

Here's what else I'm thankful for...

  1. My Valkyrie knit hat by my cousin, Adina
  2. For the first time in my life, we had a conflict-free family Thanksgiving. And I wasn't even drunk, nor did I have a significant other at the table to distract me
  3. The morning steroids I had to take for chemo that got me zipping around the house like a maniac to get the turkey done, clean the house in order to make up for the fact that the cleaning lady didn't make it yesterday
  4. The strength that it took for me not to kill the children this morning
  5. Shower-free cleansers stolen from the hospital on a morning when I wasn't able to take a shower this morning
  6. My Aunt Susie's rendition of my grandmother's potato kugel
  7. My son's pumpkin pies (thought he gets a negative point for having eating a quarter of the pie tonight when he was supposed to be washing dishes, which I discovered he ate when he was on his way to bed)
  8. My mother's rendition of my grandmother apfelkuchen
  9. The wine my uncle brought in abundance
  10. Scented soy candles
  11. Southern Living's accessory line that makes me look professional
  12. My nickname - Martha Jewart
  13. Vacuum cleaners
  14. My father washing the dishes
And, now, for your video-watching pleasure...

And, just for you... one of the more humiliating moments in my Thanksgiving life...
video

Friday, November 18, 2011

The latest and greatest: Hospital release, long weekend, new look, planning 2012


To cover what wasn't covered in the video persay...

It's been a long week. Of not much of anything. Sure, things started off with a bang with my friend's daughter's Bat Mitzvah - it was a wonderful affair, a great reprieve from being in the hospital (though, my only regret was that I couldn't have alcohol thanks to the antibiotics, damn it). It was especially cool to see the mythical city of Vineland, which Billy had talked about for years. It was far from what I'd imagined, but an interesting place. It was a bit like Oberlin times 10, a bit of the "wrong side of the tracks," a dash of Eastchester, mixed with a Southern/Midwest twist.

I have to send a BIG kudos to the Joyce family, for finding that perfect balance between made-from-the-heart, handmade affair with professionally catered and semi-formal reception. Everything had a personal touch - everything - and yet, the amount of food was incredible, the decor was so much fun, and the DJ was great (and I'm not a big fan of your typical Bat Mitzvah DJs and games). THANK YOU, again, for a wonderful time! My only regret? I missed the majority of the service as we got a late start driving down to Vineland, and we got terribly stuck on the GWB to boot (I hate that stupid bridge).

The next morning, we had a farewell breakfast with the Joyce family, and then we stopped by my friend Lisa's house. We thought we were stopping by for a quick cup of coffee and maybe a nosh, but we walked into her husband, Scott's, birthday party. To make things even more exciting? Our kids got along smashingly. Instead of 2 sets of siblings, they acted like 3 brothers and 2 sisters. It was awesome.

I knew it was going to be a week of recovery at home after the hospital stay and the New Jersey trip, but what ensued was unexpected. I was quite content doing nothing but lying still for 99% of the day. I didn't clean. I didn't do laundry. I didn't do dishes. I resisted the urge to say, "Screw the stitches, I'm cleaning this damned house and doing what I always do," and I sat still. I stressed, yes. I cried and yelled at the kids, yes. I asked my doctor to put me back into the hospital.

But I didn't take part in any activity that would strain the surgical wounds, or encourage an infection.

Yesterday, however, was my big day out. I had a doctor's appointment in the morning. Dr. Nordberg agreed that things look really good, that it looks like the infection has cleared, the swelling is reduced, and the draining is at a place where we could remove the drain, but, we're keeping it in to make sure that we don't have a repeat of the seroma. The target drain removal date is Monday, which allows for chemo to continue next week. I decided that while I was in the building, I'd run over to Dr. Tepler's office to make an appointment for my chemo session next week, as I had a hunch there wouldn't be a lot of available appointments. Sure enough, there was one opening on Friday. That visit led to returning the art supplies to the art enrichment program at the Bennett Cancer Center at Stamford Hospital, which became a 15 minute chit chat. Then, it was a restock the refrigerator after the Snoctober Storm Blackout session at Fairway Market, which led to lunch with My Rock. Talk about a good man, after 2 weeks of free lunches at the hospital (I was allowed 2 guest trays a day, so he would come every day for lunch to visit me, though I think it really was the turkey sandwiches and brownies), he offered to meet me at Fairway during his lunch break to treat me to lunch, finish pushing the now fully-loaded cart around, and then to load my car so I didn't have to lift anything heavy.

After that, I went to the Hair Bow to pick up some wig stands, which evolved into me trying on wigs and finding my final, spunky wig - so now, I have a complete hair wardrobe to suit every mood and situation I find myself in: My professional wig, my sexy night out wig, my errand-running hat-friendly wig and now, my fiery badass wig. It's shorter than I'd ever cut my real hair, it's a fierce red (Molly Ringwald red), shaggy, highlighted, and just so much fun!

I had to pick up my Madone from Danny's Cycles, and the new wig (which, yes, I wore out of the store because I looked so fierce), really confused the guys there. I had a nice conversation with Dave, the mechanic, who is my rock star, and then I was off to Regina's house to pick up the product from a holiday fair on Friday night. I was greeted by a very pleasant surprise - I knew that I had been named Miss Go Give for our Mary Kay unit in 2011, and I'd been given my certificate. What I didn't know is that I was also given a diamond necklace for the honor! Talk about a pleasant surprise!

Of course, Starbucks was having their 2-for-1 holiday latte giveaway, so I made a pit stop for two gingerbread lattes to celebrate, dropped of the tongue at my mother's house I picked up at Fairway, and then got home. I was thrilled for a night in, when My Rock called again, asking to stop by. That was a welcome intrusion to the evening, until my daughter pointed out that the painting class for cancer fighters and their families was happening at the Bennett Cancer Center. So, instead of the nice steak, green bean and yam dinner I had planned, we cracked open a couple of cans of soup, cup up the cornbread, and shared a quickie soup and bread dinner with My Rock, kicked him out, and then hustled to Stamford Hospital.

Fortunately, I was able to finish my two paintings (photos to come soon), and the kids did a couple of paintings, as well.

So what have I learned from all of this?

  • I am a neat freak trapped in a slob's body.
  • Hiding from mess makes things all better.
  • It's worth paying someone else to clean your house so you can get what you need to get done done, especially when you suck at it in the first place.
  • It's especially worth paying someone else to do it when you can't.
  • When the doctors tell you to stay put and rest, do it. Otherwise, you're facing 11 days in the hospital and going under the knife.
  • My base temperature has dropped to the high 96-low 97 range for no particular reason.
  • I look like Charlie Brown when I don't shave down the few hairs that refuse to yield to the chemo.
  • I don't always look like Jabba the Hut with a short haircut (though I'm not convinced enough to cut my real hair that short. I'll just keep the wig for future reference).
  • My Rock is possibly the most incredible man I've met. Ever. And I think I'm the only person who can make him blush.
  • Fairway Market rocks. Duck and steak in chimichurri sauce for $7.99 a pound at their hot buffet. Who else does that?
  • Diamonds make the day that much better.
  • Being a good team player and giving from the heart really does get recognized by people.
  • You really can drink 2 Venti Gingerbread Lattes in one sitting. Just make sure there is a bathroom nearby about an hour later, because it goes right through you.
  • Painting is fun. I'd forgotten that.
So, what's next while I'm homebound today? Aside from work, I'm putting together the calendar of 2012 LIVESTRONG Events, the sponsorship plans for local business to get on board and kick off 2012 fundraising, and preparing for tomorrow's EFTA Promoter's Meeting, where I expect the ROCK the RIDGE to become an EFTA NECS points-qualifying race!

Friday, November 11, 2011

Video Updates, including today's trip to the operating room...

Chemo Day 39


Chemo Day 41


Chemo Day 42: Unplanned trip to the operating room

Sunday, November 6, 2011

Triumph... and paying the piper with the help of some friends. (With friends like them, who needs enemies?)

The LIVESTRONG Challenge changes you. It just does. On an emotional level, a physical level, and dare I saw, on a molecular level. The experience, the Challenge itself, the people, and every moment become indelible.

For me, this year, it was a mix of emotions. I was exhilarated that we'd achieved Ride for the Roses status. We'd met that goal, still leaving the goal of Yellow Jersey for the future - it's not often that you can achieve a huge goal and still have a further goal within the same genre, but LIVESTRONG sets many bars to reach. Along with all the amazing dinners, receptions, experiences, and swag comes the opportunity to challenge yourself in both the ride and the 5k run.

I am not a runner. I can proudly say that I never have been. Yes, I can sprint, at least I used to, in basketball. Such is the life of a forward - you have to sprint from one end of the court. I always prided myself on always being the first to be where I needed to be, much to the surprise of other players, as I was typically twice their size. But that was as far as I would go, and that did my knees in years ago, along with too many years of advanced ballet too young.

I decided to do the 5k. I knew I wouldn't be running all of it - forget training for the run, I hadn't managed to train for the bike ride. I had no business "running" it. But, I wanted to run some of it. So, I brought my only sneakers, my Reebok Reetones (yes, the ones that were recalled), got a firm sports bra (LIVESTRONG, of course) to wear under my t-shirt, and got ready. I was going to walk all of it except the last bit to the finish line.
But the adrenaline got to me at the start, and I decided that I had superwoman powers, and I decided to run. I turned to my kids and said, "Ok, let's go." And they both started whining. I reminded my daughter that she's the one who decided to participate in the 5k in the first place, long before we got the complimentary entries. And I reminded my son that he kept wanting to do triathlons, so a 5k was nothing. My son and I started to jog, and my daughter just pouted and walked. I told my son to go ahead, and I let her catch up to me. So we walked together and enjoyed the walk. We did silly walks uphill on Congress, we stopped to see the sights and pose for pictures. Until my son was back in sight and we were on a flat going downhill. And then it was game on. I jogged a bit, and then went back to walking. I encouraged my son to continue so he could had me my rose at the finish line.

Just as I was turning a corner, my son's iPod that he loaned me played, "Fix You." As the melody turned to a driving beat, I upped my pace. I ran for the remainder of the song. I meant to fast-forward through the next song, and somehow, I ended up locking the song that forced me to run into a repeated loop. So, at this point, everytime the beat picked up, I started running. The words of the song struck me, as I passed some LIVESTRONG staffers that had been sending words of encouragement through my treatment were on the course and started cheering me on. I couldn't stop running in front of them, and I started crying a bit.

My son was a good couple of blocks ahead, jogging, and my daughter was starting to catch up again. She stopped and gave me a flower, and the music turned from mellow to driving, and she ran with me, as we sang out loud together. I got through another few blocks, and then, I could see the finish line in the distance. As the song started over again, I told my daughter I was going to run the rest of the way. She pouted, and said she couldn't, so I kissed her and told her I'd meet her at the end.

And I ran. And it hurt. But I kept moving forward. My run became a jog as the reality of the incline of the bridge came into sight. This was an incline I would suffer riding up, let alone running up. But I pressed forward, and as I did, the tears became more frequent. I saw my son cross the finish line and move over to where the volunteers were with the roses. He was in place, now all I had to do was to reach him.

I started to hear the announcers, see the black-shirted staff members come into view, and Doug Ulman's figure up ahead. And then I saw the split - between the masses and the survivors. I started to weep. I was in disbelief this was happening. I was running in a 5k. I would have to go through the survivor chute, not the general chute. I'd be getting my first yellow rose - a prize and a symbol that I really had cancer. Doug Ulman greeted me as I tried to run, and I don't even think I responded - I was blubbering and sobbing. I saw my son, who had my rose reached out. I passed by all the other volunteers, and, with one hand, I took the rose, and with the other, wrapped my arm around my son, hugged him, and started to cry uncontrollably, as he moved me across the finish line. It was over. I had done it. I got my first yellow rose. And I ran in a 5k.

The next day was the bike ride. Again, I didn't want to anger my still-healing wounds from my double mastectomy. Not that I felt much of anything other than tightness and some swelling, but my doctor kept telling me I was healing. Fellow survivors kept telling me I was healing. So, I had purchased another serious sports bra. It compressed, provided support, nothing moved when I moved. I kind of overdid things on the 5k, though.

My legs weren't "there," as we say in cycling. I didn't have my legs. I struggled on every incline, not just the big first uphill that declared several casualties, sidelining us and forcing us to walk. Every incline hurt. I didn't have my groove. As much as it felt from the waist up that I hadn't accomplished much, my legs weren't happy, and it seemed that this year the course was hillier than the year prior. And, I found the tightness in my chest made it more and more difficult for me to breathe. I kept trying to breath into my back, as my pilates instructor had advised me to do. But it wasn't happening. I wasn't getting enough air. I had to stop.

Over the next day or two, I'd noticed that my left breast was still a bit pink and slightly swollen, but it wasn't alarmingly different from the right.

But it was on the trip home, as American Airlines directed us all over the Chicago Airport from gate to gate, running all around with bags, a regular bra, and after a long, extended flight from Austin, that my left breast started feeling really sore. By the time we arrived in Newark, it was clearly inflamed. It was now a bright pink, and I could see that my shirt was being pulled to the left thanks to the swelling. By the next morning, it was almost a full cup size larger than my right.

I went to Dr. Nordberg, my plastic surgeon, to look at the redness and swelling and to see if I was still on course with Round 2 of chemo. Instead, chemo was postponed and I was sent for a sonogram. The sonogram showed nothing more than edema - it was just swollen - with no obvious source. We determined that I'd possibly overdone things a bit in Austin, and that the entire American Airlines debacle had sealed the fate of the irritation, literally blowing it up out of proportion. I was put on a rest program, no pilates, no nothing. Just light movement/work, no housework or anything strenuous.

I did what I could to keep to that. For a week, I kept low. However, then the freak snowstorm hit. I was taking it easy, lounging on my sofa, working on my blog for the Journal News, going over some stuff for Danny's and for my full-time job, and the power went out. For 2 nights, the kids and I cowered under the covers of my bed as we watched the temperature indoors plummet from 68 degrees to just over 40 degrees on Monday afternoon. I was feeling sicker and sicker. I developed a fever, just over 99 degrees, by Sunday night. I kept calling NYSEG, pled for help from NYSEG, etc, for someplace to go other than a warming shelter. This wasn't snob appeal, but I knew that my immune system was already suppressed from the chemo, and again with whatever irritation was developing in my breast - I couldn't afford to be in big crowds for an extended period of time of folks that also may be sick. Something as simple as a cold or a flu could prove to be really problematic. I kept trying to get a hold of NYSEG to explain this, but they kept blowing me off. I asked if they could at least contribute towards a hotel, as they clearly weren't reacting responsibly. They didn't even reply.

I saw the redness in my breast get even worse, and now, there was discomfort. I saw Dr. Nordberg again, after the kids, cats and I relocated Monday night to my aunt and uncle's house in Hamden, CT, for what was going to be a check-in to see if I could proceed with chemo. Instead, I was admitted to the hospital. A second sonogram revealed big pockets of infection around the base of my left breast.

I've been in the hospital since, on an antibiotic cocktail prescribed by Dr. Adler-Klein, the infectious disease guru of Stamford Hospital, that can only be administered via IV. It's likely I won't be released until at least Monday, depending on how the infection is doing. It's plateaued, in my opinion, from the other day.

One drug, in particular, leaves a horrible aftertaste, plaguing the back of my tongue, as though I have terrible chronic halitosis and I haven't brushed my teeth for days. Fortunately, no one can smell that.

But, just like American Airlines and NYSEG, that made what was a surmountable mole hill into an infectious mountain, I'm left with a bitter taste in the mouth.
NYSEG, this one is for YOU!

Saturday, November 5, 2011

Chemo Day Catch up...

Chemo Day 36


Chemo Day 37



Chemo Day 38

Wednesday, November 2, 2011

Chemo Day 35: In the hospital...

Yes, I've been admitted to the hospital. Nothing like a good infection to turn your boob pink.