Shrinking...Violets

During radiation treatment, I would lay on the table and try to find something positive to wrap my head around. Often I thought of the tumor dying and dissolving, and yes, sometimes I even imagined it squealing 'I'm melting, I'm melting...' Wicked Witch style as it went. I tried to picture healthy tissue springing forth and blooming in its place, like a beautiful garden. As far as actual probability, I was told that the tumor will go away only about 20% of the time, with another 20% experiencing no measurable change. The majority, about 60% of people, fall somewhere in the middle.

I visited with my surgeon end of last week, and although formal downstaging cannot be done until after surgery and pathology, the tumor is gone! This does not mean I'm cancer-free (yet), and both surgery and post-operative chemo are still necessary because treatment is based on the initial stage III diagnosis - but this simplifies surgery a bit and long term survival rates are positively impacted by significant downstaging.

I'm proceeding with cautious optimism until we do have pathology, but this is a great boost as we prepare for surgery on May 3rd!

The Breath of Spring

I must admit, updating when everything seems so status quo seems a bit odd, but this period of normalcy is so refreshing.

Keith, Kerry and Keira have come to visit for the week, and though I think we're all suprised that two small children can run four adults so ragged, it has been pure joy. Being only two months apart Van and Keira make perfect playpals - even when squabbling over whose turn it is with whatever the toy of the hour is, they're hilarious to watch. And when they're done fighting and they hug and kiss, it is precious.

They couldn't have come at a better time. I'm still very tired but all the burns and other discomforts are over with, and I feel mostly like I did before this all began - minus all the symptoms that suggested a problem in the first place. I've entertained guests on the back patio, cooked a few delicious meals, slid down the big slide at the park over and over, dyed eggs, and had an Easter morning egg hunt for half a dozen munchkins!

Surgery is scheduled six to eight weeks after radiation treatment is over, as it gives the radiation time to continue to work, but precedes any significant build up of scar tissue. My surgeon has tentatively scheduled surgery for May 3, although I'll see him in the coming week to firm that up. Though I dread they may tell me that Van will not be permitted to visit during my six day hospital stay, the May date will at least allow me to celebrate his second birthday at the end of the month! And the sooner surgery is behind me, the sooner the third phase of chemo can begin and the sooner we can all put this behind us and go on counting birthdays!

Today's Blog is Brought to You by the Number 6...

Phase I of treatment is a wrap - radiation finished up last Wednesday, and the chemo pump came off Monday. I wish I could tell you that the last few days treatment free have been blissful, but alas, no. As I had been told all along, despite the relief of being at the finish line, physically, the end is the worst. But, as I've also learned, treatment pushes you until you are teetering on the edge, and than its over and you recover - quickly.

Donovan has been learning to count - goldfish, stairs, the number of tires on the school buses we pass on our way to work. So lately I've been finding myself counting things, too.

Over 6 weeks of treatment I've had:

• 28 radiation treatments, with 3 shots of gamma rays each time
  
• 200 ml of Fluoroucil (chemo), pumped in slowly in tiny batches every 10 minutes, 6 times an hour, 144 times a day, for 28 days
  
• 6k ml of leucovorin, a reduced folic acid used in conjunction with the chemo to enhance effectiveness
  
• 9 prescriptions and 6 over the counter medications to address side effects
  
• 16 doctor appointments
  
• 6 blood tests
  
• 1 abdominal ultrasound
  
• 1 grey hair

Of course, there are also all the things I lost count of - the meals, cards and emails, and other thoughtful gestures from family and friends, the kisses and hugs from Van and Steve, the simple pleasures because I was finally too tired to over-complicate things.

So, now I have 6 glorious weeks off before phase II. Surgery and recovery will undoubtedly be a new challenge, but for now, I can just relax, heal, get back to running and skiing, and continue to count all the simple pleasures.

Blood, Sweat and Tears

Early on a friend told me that I would find a little bit of good news in each visit, and he was right.

The chemo pump went back on yesterday after a two week break, and during our visit my doctor had plenty to share. First, my white and red blood cells, platelets and various other blood components have all stayed very stable - on the mid to very low side, but all still in the normal range. As chemotherapy drugs can't distinguish between healthy and evil cells it attacks them all, which naturally results in these various counts dropping. The ability to fight off infection and stop bleeding is pretty critical, so these complete blood counts (CBCs) are closely monitored each week. Beyond the normal range is the 'lower-than-normal-but-we'll-still-treat-you range', followed by the 'so-low-we-can't-chemo-you-up-this-week-and-don't-cut-yourself-shaving range'. I hope to avoid both.

More importantly, they shared the results of the genetic testing they had performed on my biopsy. They were looking for the five genetic mutations commonly associated with hereditary nonpolyposis colorectal cancer (HNPCC), which is a syndrome that puts people at higher risk for colorectal cancer. Some studies indicate that without screening as much as 80% of people with HNPCC will develop this cancer, compared to about 4% of the general population, and at a much earlier age.

I tested negative for each, meaning that mine is assumed to be just a sporadic cancer. Given the maze that cancer is, there are likely other hereditary genetic mutations that simply haven't been isolated yet, but I'm willing to take these results for what they are, which is good news. For me, while it doesn't rule out a recurrence, people without HNPCC tend to respond better to treatment and have slightly less risk of recurrence. Most importantly, though Van will still have to go for regular screening at an early age now that he has this dreaded family history, I did not pass any known genetic mutation on to him - and it is unlikely that my brothers carry them either.

I don't think I realized how heavily this was weighing on me until Dr. Conlin shared the news and I promptly broke down in tears. This is rare for me, and based on her pie-eyed, mad scramble for tissues, I know I surprised us both - but I imagine oncologists don't get to see happy tears as often as they would like, so I don't think she minded.

Age is Just a Number

Steve says I'm making him old before his time, but he did turn 40 last Thursday, so I don't think he can blame it all on me. This being such an important birthday, I had spent weeks worrying over how to make it special, especially given that when I was diagnosed he backed out of the birthday trip of a lifetime - a 10-day ski trip to Chamonix, France. Though I had objected, someone pointed out that I wouldn't think twice about doing the same for him, and this is true. Luckily, this birthday fell during my second week off chemo, and I felt great.

On Thursday, we had a special dinner at The Flagstaff House, up on the hill overlooking the lights of Boulder. From the amuse-bouche (the chef's bite size interpretation of a BLT), past the intermezzo course of grapefruit sorbet and through to the final sweet spoonfuls of maple panna cotta, this was a memorable meal. As this was our first night out just the two of us since this all started, it was even more delightful.

Mary Ellen, a very wise colleague, reminded me early in the week that I should spend some of my good days at home too, and she was right. Steve and I both took Friday off, and right after radiation Friday morning we trekked up to Frisco for the weekend. Much of our Denver family joined us on Friday night, so we were rolling deep. (To ensure that Steve stays hip as he ages, I picked him up some slang flashcards. FYI, 'rolling deep' means to travel with a big entourage.)

Saturday, Alty and Brooke watched Van so that Steve and I could ski with the gang, and it was just what I needed to clear my head - four inches fresh on a warm, blue bird day, plenty of fast turns, some time spent on the kiddie hill teaching sweet Riley how to snow plow, and as there is more to skiing than skiing, beers on the deck afterward. That night we all gathered under one roof to sing happy birthday and toast Steve for being young at heart. Throughout the evening, it was just so easy to take in the joy around us; there were friends both old and new, friends quite obviously falling in love, two couples planning weddings, two expecting, half a dozen giggling children with icing smeared across their faces, champagne corks popping and wave after wave of laughter. I don't think I could have imagined a more perfect way to re-energize and prepare for these next two weeks of treatment than this.

Side Effects

There was a lot of healing this week. While there still isn't any firm answer as to root cause of the abdominal pain, the further I get from the chemo the better I feel. I'm certainly not 100%, and as I'm starting to see some impact from the radiation I think it will be awhile before I am, but there's marked progress. The pain is infrequent and much less severe now, so much so that I'm eating again (though I'm careful to limit myself to bland and easily digestable foods), and most of the other side effects are gone altogether. This morning, Steve went skiing, while I happily made Van breakfast and played hide and seek.

As I visit with my doctors, read up on the materials I've been given and provide friends and family updates, there's so much focus on the side effects. It makes me think about all of the positive side effects that don't get near as much attention...

• I'm learning that no matter how strong I thought I was, I'm even stronger.
  
• My family and friends have all stood up to help bear this burden, and I'm learning that each is even more creative, kind, generous and resourceful than I had already given them credit for.
  
• I'm figuring out how to ask for and receive help, hopefully with grace - Steve might argue the graceful part and I think Jen may have mentioned something about 'unrelenting bossiness', but I'm giving myself the benefit of the doubt here.
  
• I feel a new depth of love and respect for all of those supporting me through this - and for myself.
  
• I'm finding new ways to interact with Van that are just as enjoyable. Thanks for the suggestions, Kristy.
• I have to change fewer diapers and it doesn't look like I have to cook a meal until Thanksgiving.
  
• I have renewed friendships from high school and college that, purely due to geography and the usual complications of life, had been dormant the last several years - and not surprisingly, I'm finding as much joy, humor and comfort in those relationships as I did years ago.
  
• I threw away the Weight Watchers book and points calculator.
  
• I'm slowing down and really appreciating everything around me, especially the simple pleasures. Service with a smile AND fresh scones at the bank on a Saturday morning? What a great day!
  

So much anxiety, fear, courage, laughter, pain, relief, love, appreciation - it's quite the rollercoaster, this journey!

The Honeymoon is Over

The last few days have been very tough. Although the chemo pump came off it seems to have been just in time, as my body started to react. The nausea and fatigue really kicked in, as did an unexplainable and paralyzing sharp pain that would radiate out from my stomach through my abdomen. I can tell you it brings no comfort when your team of doctors scratch their heads and tell you they haven't seen this before. Perhaps you've given yourself an ulcer? Possible, I have been under a wee bit of stress lately. Gall stones, do you have any history of gall bladder problems. No, I don't even know where my gall bladder is. Heart burn, does it feel like heartburn? No, it feels like my stomach is eating itself. Hhhhmmm, keep taking Advil and let's keep our eye on it. &%$#@*&$@!!

With the better part of 36 hours sans chemo now I can feel myself healing though. The nausea has dissipated and the pain is now more a dull ache with only the occasional sharp pang reminding me not to get too comfortable.

As dark as this was physically, it was a challenge emotionally as well. Up until Friday night, I had largely been the same, albeit a bit more prone to naps. This weekend however I spent most of my time clenched into the fetal position, reminding myself that the end justifies the means and gritting my way through a little mantra cross stitched on the waiting room wall of the comprehensive cancer center, 'Every cell in my body is well'. At some point, I did abandon that in favor of 'Find a happy place, find a happy place.'

I would periodically croak out parenting instructions and essential chores; Van needs a diaper change and a bath, we need to wash his nap mat for school on Monday, no more cookies - he needs some fiber! For his part, Steve played Mr. Mom perfectly. He even managed a trip to the train show at a local coliseum, which was a huge hit. But this was the toughest part for me. Not being able to take care of Van, of Steve, of our family, is harder to stomach than the physical pain. Skipping the family pillow fights, missing the last kiss before he runs off into his classroom, trying to explain to a wide eyed 2-year old that Mommy can't play hide and seek just now, is unbearable.