Thursday, January 31, 2013

And the winner is... Me?

The results are in... and they're muddy. I didn't realize how much I was hoping for cut and dry, clean scan results until after I didn't get them. The news is good however. There is no new evidence of cancer showing up anywhere. My lower half still shows clean, and the area from the first surgery is healing well. Anything else showing up on the scan is most likely healing tissue from my last couple of surgeries in November. My primary oncologist is very happy with the results and is suggesting that we take a break for three months and then do another PET scan at that point. So... we may actually be past the treatment part of this battle and on to the wait and scan and then wait and scan some more portion. Just so you are all aware, it takes five years of this wait and scan bit before they start using the big "R" word (remission).

I have an appointment with another oncologist on Monday to get a second opinion. I think I hope that he'll have the same thoughts. It would be nice to take a break from all of this for a while and assume the best. At the moment however, I feel like I am still in a state of stasis until next week.

I've found that navigating the netherworld of not knowing has been one of the hardest parts of all of this for me. I'm not a tremendously patient person, and waiting for test/scan results has always been some of the most difficult times. As it is, I can feel myself already hoping for a clean report in three months. Plenty of time to continue working on those patience skills.

Sunday, January 27, 2013

Dance Your Cares Away

It has been a pretty excellent weekend around here. Attended a murder mystery party Friday evening at one of my closest friends' homes and had a wonderful time. There were lots of accusations, pointed fingers, hilarious exchanges and a steady flow of wine and gin. We took far longer than the rules show for each "round" of the game and a couple of people were keeping one page ahead and confusing the rest of us in our prior round ignorance. It was a fun (and late!) night all around and I think all of us who attended are looking forward to the next one sometime down the road. Needless to say there was much sleeping in on Saturday. Followed by a lazy brunch and afternoon. Just the rest I needed to be prepared to dance the night away. The monthly dance party at a local bar here in town was full of familiar faces and fun people. As always, the eclectic music mix kept us on our toes and having a grand time.

It's a quiet Sunday around the house. And I kind of wish today was a second Saturday so that I could head to a local watering hole and watch some live music. Ah well... there is housework to finish up and rest to be found.

I'm impatiently awaiting my Tuesday afternoon appointment with my primary oncologist. That's when I'll get the results from the most recent PET scan and we'll talk about what the next steps are in this process. I am looking forward to planning a vacation and other getaways in the upcoming months. All this snow and cold has me hankering to get out of it and into warmer climes. But all planning is on hold until we know what the next few months look like treatment-wise. And those answers should start coming in just a couple of days.

Tuesday, January 22, 2013

Maybe if I spin around a bit?

Here we are again, radioactive with no place to go... and no superpowers yet. My childhood diet (and frankly adulthood too) of comic books, movies and science fiction is not holding up to my modern medical experience. I should absolutely have a great new skin color and some nifty special ability by now. Alas, no.

Fourth PET scan in the bag though. Did find out something fascinating about the radioactive thing today. It's funny how different techs/nurses/doctors share information; you are always getting only a majority of the information available. There's some five or ten percent that they don't think to share, don't really think about, or don't think you need to know. One of the techs today was a young woman who had a baby in the last six months. So she asked if I had children, and I said no but that I did have an infant nephew. She let me know that I give off that radioactivity in this day, and should reduce my exposure to little ones. Who knew! So maybe someone should hang out arm in arm with me each time and we can see if you get the superpowers.

They sent me home with a copy of today's PET scan on CD, but I don't have the computer program to read it or the knowledge of what the hell I was looking at anyway. I see the first of two oncologists on the 29th and will have results then. Fingers crossed, the results will show no evidence of cancer. But we'll know when we know. In the meantime I am not going to waste my precious time fretting.

I had the opportunity of hanging out with many friends in one of my favorite spaces this weekend. It was a little odd though, since last year at this same event was when I started to let the word out about my cancer. And it was the first time I'd seen some of my closest friends since they found out. The hugs and cuddles were extra long and almost forceful at that time. Last year I also had an important conversation that day which led me to my amazing thoracic surgeon. The event was another reminder of what a long and portentous year I've had. But there I was again, feeling good and having a wonderful time in a marvelous space, warmed by the fires and friends. Reminds me that it has all been worth it.

It got bloody cold in the last couple of days. Winter finally decided to settle in properly. Snow and wind and cold. Don't much care for the cold. So after a morning of being scanned and running errands in this chilly weather, I came home and made comfort foodstuffs. Been huddling by the space heater and catching up on email and web work while inhaling warm rice pudding and hot tea. Probably move to the sofa soon, after whipping up some cheddar broccoli soup, and cozy up with blankets and a book. Good times.

Friday, January 18, 2013

Taking it all in

It has been a wonderful week spending time at my sister's and getting to help out with my adorable nephew. I'm tempted to say "bond with him," but he's too young yet for that to really take effect from this relatively short visit. I know I'll be back often in these first few months though, so hopefully he'll start to figure out that I'm a solid presence in his life.

I've learned how to efficiently change diapers, to read feeding cues, the difference between sleepers and sleep sacks, how to swaddle, the terror of diaper rash, good diaper bag packing, how to mix formula and more. I have even been peed on, a couple of times. All in all he is actually a really good and quiet baby. He only cries when he needs food or changing, or when being changed as he hates being mostly naked and cold. My sister and brother-in-law are tired, but there is an increasing rhythm with the days and everyone is settling in rather well. The parents are clearly in absolute love with their child and it is a beautiful thing to be present for. I know this time I spend with Ryker will also draw my sister and I even closer. Needless to say, it's been a bit of a love-fest.

In case anyone is wondering (and I've already been asked three times), no maternal instincts or second thoughts have arisen about children. I have loved these days, and look forward to much more time with my nephew, but my role as doting/weird/protective aunt is plenty good enough for me. 

We've been reading books about babies, my sister and I. Lots of interesting information and more than most anyone really needs to know about them. The most amusing bit to me was where one of the books explained that while there are lots of tips and advice, every baby is different and it can kind of all be thrown out the window if it doesn't work. So, really, all parents are just winging it. Figures.

There was one particular bit in a book that caught my attention and has really stuck with me as I've observed Ryker over the past few days. It defined two types of alertness and sleep, active and inactive. In sleep it is simply the difference between a baby so quiet you want to check if he's breathing, and one that is sleeping but making cute little noises and mildly moving about. The interesting bit is in alertness. Active alert is an obviously awake baby who is waving their arms and legs, looking around, making facial expressions and noises, etc. Inactive alert is a wide awake baby who is super quiet and still but their eyes are wide open and they seem very focused. In this state they are just absorbing the stimuli around them. The world is a whole new place to them where everything is interesting. It takes a lot of work and concentration to take it all in. They will spend a couple of hours a day at this.

Babies are masters at being present, it is the only way they know so far. There is not a next moment, or any attention paid to the one just past. Ryker is upset when cold, but immediately calms down when the clothes are put on. Then he is right back to his regular repose until something else is needed. And the inactive alert time is just fascinating. He is clearly taking a lot in, but it is such a tranquil state and I find myself watching and as focused as him for long stretches. Clearly I don't know what it is like for him. But for me it is a strange melding of both inner and outward work. My focus is outward and on watching him. Inwardly there is great calm, but with a plethora of thoughts teeming about. Each thought is given attention and then sinks back into the mass; there is ease and flow. It feels very similar to meditation. But rather than seeking stillness, I'm instead serenely aware and engaged with the activity in my mind as well as the flow of stimulus from my outward focus.

I equate active alertness to the way most of us spend the time in our days. We're busy being busy with work and projects and conversing and eating and cleaning and reading and interacting with our worlds. This is good time, needed time and activity. But I think maybe it is good to find a little time for inactive alertness in our days. Just taking it all in. Letting the world wash over us and being supremely fascinated with what it reveals.

An infant doesn't have much to be busy with in a day. All they have to do is live and breathe and eat. Weeks will pass before there is anything more to do. No one will expect more of them or judge them for doing so little. Living is enough. That is a lesson worth remembering for all of us busy adults. Just living is enough. The rest is extra.

Monday, January 14, 2013


One of the difficult things about living with disease is the lack of control you sometimes have over your body. Ninety percent of the time I feel pretty good anymore. But occasionally pain will come out of nowhere. These days it is not more than moderate and often easily dealt with by getting comfortable, taking some pain medication and relaxing while it passes. But every once in a while, the pain is more severe and completely hijacks me. There is no precedence for it, no apparent reason for it, no clear explanation for it. Not counting the week or two directly following my last two surgeries in November, I haven't had any serious pain for a few months now. Until this Saturday.

I had wonderful plans to go to Chicago with several of my girlfriends for the day. Got up and ready and headed out like any normal morning. Not long after arriving at my friend's house I started to have some just-past-mild lower back pain. After about fifteen minutes of judging it, I decided to take one prescription pain pill, assuming that would take care of it within half an hour or so and all would be good. Twenty minutes later we were in the car and headed out for our lovely day. Less than ten minutes later I had a pain heat flush and needed to stop and throw up on the side of the road. I assumed that this was the worst of things and the pain meds would start to help any time now. Within five minutes I decided that another pain pill would possibly help and informed my car partner that I would likely end up napping most of the way into the city. The pain continued to ramp up, and fifteen minutes later down the road I realized that going back home was my best option. Without going into the details, let's just say that the pain was pretty severe and I worried the hell out of my friends. It took about half an hour more for the pain pills to dull the pain a bit. By then I was home. I crawled into bed and ended up in a four hour nap.

When I awoke the pain was mostly gone, just the shadow of a low, dull ache. But moving around the house I realized that I felt as if at the end of a fourteen hour day, utterly exhausted. It is amazing, and humbling, how much pain can take out of you. I had exerted hardly any effort all day, had actually slept more hours than I'd been awake, and yet it was more than half over and physically I was crushingly tired. As the evening came on, the shadow of pain dissipated and Sunday everything was back to normal again.

There is no telling why pain decided to claim my day. I've had an MRI of my lower back and a multiplicity of CT and PET scans of my torso. There's nothing down there. I have had to learn to accept that pain is just part of the disease and the treatment sometimes. I don't get absurdly worried or contemplative about it. I am very good at just allowing pain its visit and breathing through the ordeal. The best feeling is waking up from those post-visit naps and realizing that its gone. I smile and sigh and stretch and am thankful.

I typed about half of this post one-handed while holding my 8-day old nephew in my lap for a post-nursing nap. I'll be at my sister's this week helping out and bonding with the little guy. As a night owl I will be taking the later night shift and letting my sister and her husband work on their sleep deficit. There is something very beautiful and peaceful about watching an infant sleep. It certainly makes it easy to sit fully in the moment. Yesterday (Saturday) may have been a difficult day, but today is certainly better. And it's the now that matters.

Tuesday, January 8, 2013

Short Update

Started the new year at a terrific party and had a tremendously fun time playing a flapper. The biggest news so far this year is that I have a nephew, Ryker Bruce Lee born on January 4. He's adorable and I'm looking forward to spending some time with my sister and him next week. I was there for the day and I must say that it was awfully nice to be in a hospital and on the other side of the bed for once. Everyone is doing well and they're home and already getting a few hours of sleep at night. It's a pretty exciting endeavor.

I saw my thoracic surgeon yesterday for a follow-up visit and x-ray. Everything looks good and she seemed pleased with my recovery. I told her about some pain I've been having and she was concerned about a possible blood clot. A couple of hours and a CT scan later, and everything looks clear with no evidence of a clot. And she didn't see anything on the CT scan that concerned her. This makes me feel pretty hopeful about my next PET scan, which is near the end of this month. So a few more weeks before we have any real news about where things are and what the next step will be.