I'm no good for zombies now...

It's been a few sleepless nights around the house. I've had the opportunity to spend quite a lot of time with several friends and some family over the last many days, and that has certainly been good for my mind and my soul. My openness is high these days, so I will honestly admit that there has been an underlying current of worry, fear, and some moroseness running under these last four days.

My positivity stands. Hope is my shield against the arrows of recurrence. It is a heavy shield to hold high. I try not to judge myself too harshly when I grow weary and the burden wets my eyes.

Let's not let me get stuck in the poetics and philosophy of it all just yet boys and gals. The nuts and bolts are more what you are here to learn, and far easier subjects to write upon. So... brain radiation. Ain't that about a bitch? Yesterday I waited an extra two hours in order to be pinned down by a creepy plastic mask to a hard table for about two hours of pointed radiation therapy to blast three pinpoint-sized tumors, and one nearly 3 cm tumor on the right side of my brain. The big one was attacked first and very quickly, taking only a few minutes. The remaining three were focused on through metal cones that created much smaller lines of radiation and were attacked from multiple angles each. There would be a tech come in to move my table where they needed me, and then the machine would wind its way to the right spot and make its wonky noise for up to a minute. Repeat, repeat, repeat, ad infinitum. I napped through most of the second tumor blasting and then tried not to concentrate on the massive crick in my neck for the last hour or so of the procedure. I only asked one inappropriate question of my techs and I have to give those gentle-speaking, Zen-energy guys credit for brushing it off with aplomb. My hats off to all those who work at the cancer center and maintain the sense of ease and positivity that permeates that place for the most part. Cancer is bad business, but they handle it well there.

We have increased my steroid medication for  few days to settle any additional edema and swelling that will increase these couple of days following the treatment. Brains are sensitive and don't like being blasted up; it's prone to be a little pissy for a little while. Hopefully we can wean me off the steroids in another week and a half. They are causing some side effects I am not so fond of, including wanting to eat everything that could possibly be shoved into my now-ever-hungry maw. At least it is tights and dress season again.

I will remain on the anti-seizure medication for an undetermined time right now, though no change in my dosage. One of the small tumors was on an area that can be prone to them and this is where the one worry is for the next day or so. I have eyes solidly on me for a couple of days, and taking no chances of course. My sister left me a two-for-one Redbox coupon this morning and maybe I'll finally watch something that has that new-movie-smell.

There are no other worrisome immediate and short term side effects from yesterday's treatment. Long-term effects are possibly months or even years down the road. Necrosis of the irradiated brain tissue is the biggest issue. There is no determining if that will happen, it will just be something that we keep an eye on through scans and monitoring. Speaking of... in about six weeks they will do another MRI scan on my brain to see how everything looks and whether there was success in our blasting. From there on I will have MRIs every three months to monitor for additional tumors and, of course, necrosis. If we find more tumors, then we do this pointed brain radiation thing all over again. And I will get a brand new creepy plastic mask to bring home and wonder how to get creative with. As my radiation oncologist says, we are holding whole brain radiation in our back pocket and that is the last big gun you want to pull from the arsenal. So many problems to follow that and only so many shots at it. In the good news column, my doc also said that there is the possibility we could never see another brain tumor. Of course you know I've hitched my optimistic horse right up to that gypsy wagon!

Ideally my case is being spoken about at the tumor board at the cancer center today. I have a follow-up appointment with my medical oncologist bright and early Thursday morning to discuss the lung biopsy and subsequent treatment options that we will hopefully be attending to very, very soon - could be surgery, could be radiation, could be Cyberknife radiation, could be chemotherapy, could be some combination. My radiation oncologist will join us as well and it will be a whole follow-up festival for all!

I am working on my list of many questions, concerns, and awful subject matters that no one wants to talk about for this meeting. If all goes well these next few days and I continue to have no immediate side effects, then I still hope to attend Crown Tournament this upcoming Saturday and then immediately head to my sister's place for some welcome nephew time and a few days of walking around Traverse City taking in the beauty of Michigan fall. She is working in the T.C. office for a couple of days and it will be like a mini vacation for me and some quality evening sister time where we will seek good food and awesome coffee shops, maybe even a winery. Welcome, happy days to keep my mind focused forward on the living and the joy. 'Cause that's what it is all about folks. Take it all in. 

And check out the creepy mask folks... oh yeah! Halloween is easy this time around!

 

Next Steps

I am just too tired to do more than a simple update to keep the information about upcoming steps in treatment shared with all of you. Tomorrow morning I go in for a CT-guided biopsy of the new tumor in my right lung. I've had one of these before in the very early days of everything in 2012. The only worrisome complication is that of a pneumothroax, which is a lung collapse. When you stick a needle into a balloon that is always a possibility. I know the odds for this one, 6% chance, because I lost those odds the first lung biopsy so long ago. Since we are going for the center of the lung this time instead of the outside edge, I am hopeful that everything will be much more copacetic this time around. If all goes well then I should be home by mid-afternoon and then sleeping and hazed out from the sedation for the rest of the day. Sounds like exactly the right time to watch some fluffy Bollywood movies on Netflix.

I will get the results from the biopsy and have a discussion about the treatment options for that tumor next week Thursday with my medical oncologist. It feels a little silly to me for us to be doing a biopsy, since I'm pretty sure we all know that this has to be a new metastasis. But that is the way of things and we need to be certain before moving forward.

Yesterday I had my radiation scan simulation and got a nifty, form-fitted mask that will keep my head locked to the table for the brain radiation. That procedure will be this coming Monday and will be a single treatment. They'll blast me with radiation for an hour or more, first focusing on the three pinpoint tumors and then spending the majority of the time on the larger one on my occipital lobe. There is a small possibility of some visual repercussions, but otherwise just the typical tiredness that seems to linger after any radiation treatment. It wears you out. For the curious, here is what a mask looks like. Mine has lots of little marks and dots on it to note where they are focusing on things. I think I get to keep this after it is all over. Might have to be a smashing party, or perhaps some kind of freaky Halloween costume idea.

So that's going to be all you get today. Tomorrow I will be a post-sedation zombie, but "Oh" the epic sleeping that shall happen!

The Give and Take (March 20, 2015)

I was awoken in the still-dark hours of this Spring morning by a phone call. It is rarely good news when your closest friends call you before six a.m. My dear friend's voice was soaked with tears as she told me about the sudden death of a mutual friend. My heart sank and we babbled useless words at one another for a small time. For what can you say that means anything in the face of Death?

My Facebook feed is filled with the news and many, many words of condolence and solace. They are all the same words, rearranged and embellished. The vocabulary of grief is straightforward. There is a small hole in our world now and we push words toward each other to try and cover it up. Scrolling further through my feed and I see that another friend has lost someone important to them, and another besides. My curiosity, ever ravenous, led me to the current death rate of 1.8 per second. There must be someone I know somehow touched by Death every single day. A dismal fact.

Of course my optimism, also ever voracious, leads me to the current birth rate of 4 per second. And though this fact feeds my hope, it does not lighten my mood. This thing we do every day, this Life, is a thin string between birth and death. Anything can come along and snip it out of the air. Sometimes it is a set of cosmic shears that comes up unexpectedly from the nothingness. Sometimes it is a final fraying after years of sharp missteps. It is always sad; often it is pitiable.

And now I have to come to terms with the vacuous space left behind. This person whose living room I sat in just two weeks ago, hearing new stories of old days. Whose shoulder I supported for an entire day but a mere week before today. And suddenly I shall never see her again. The surreality is disorienting. This kind of sadness roots me in the Now. It makes me more mindful, and grateful, for this day.

And so today is a day of true balance. A day equal in light and dark; the sun rising in truest East. Perhaps I have mentioned it before, but Spring is my favorite season. Today is the vernal equinox and I am well pleased to know that there will be more light than dark and warmer days are just around the corner. But it does only so much to balance the sadness and ache in my heart this morning.

(As stated in the post before, this was written in March and was upon the passing of Mistress Siobhan. I have chosen leave it with its unfinished ending.)

An Oddity and an Update

So, in coming to my blog after many neglected months... I found an unfinished draft of a post from March 20, the Spring Equinox. It was titled "The Give and Take" and I shall present it to you all after this post. It seems to hold more poignancy now, as all things shall in the light of the news I have to share. It ends, somewhat abruptly (unfinished as it was), talking about the coming of spring and warmer weather. Ironic now that I have felt the full falling of Fall upon us here in Michigan, and being little more than a week from the Fall Equinox.

It has been a couple of days without sun here this week, or at least a few days since I have been of the mind to notice the sun if it has shown its face here in the western corner of the state. The trees have begun to show signs of color, and though that brings a certain beauty to the landscape, I always find myself wistful and longing for the lost warmth of sun-soaked summer days. I truly am a child of the sun and find my best reveling in the heat. And it has been a summer of reveling in my world. I have sat many afternoons in the heat and sun these past months, in a place of mindfulness with nothing but my Self to find and consider; measuring my time by the visits of a hummingbird. I have found myself in great repose and coming from such a place of Center that revelations have abounded. Never have I been so at ease in the whole of Victoria.

Irony, karma, luck (that coy mistress), they do find their time in the sun as well. I recognize that I never did write a blog update about my March PET scan. Needless to say, it was a good one with less uptake in the hilum regions we had been watching and my oncologist and I decided that after a year of close watching we could move the schedule back to a more regular six-month one. So last Monday (Sept 27) I got all radioactive again. I received those PET results this week Tuesday and it appears that the right hilum finally decided it was done playing hide-and-seek and was going to become a full-blown metastatic tumor. The plan is to get a biopsy of it to be certain it is a metastasis and then to make decisions regarding treatment. Could be a surgical option; could be some combination of that and/or radiation and/or chemotherapy to follow. Of course now that we are in the zone of recurrence, I shall endeavor to update the blog more often to keep all informed of the state of treatment and plans.

However... this week was not yet done with me. I was hospitalized Wednesday night following some vision issues and a loss of consciousness. An MRI the next morning revealed that I have a sizable (2-3 cm) brain tumor on my right occipital lobe, and three much smaller ones also on the right side. We are moving quickly to address this newest piece of the cancer puzzle. I have already met with my radiation oncologist and there is the plan to have pointed area brain radiation this coming week. I will have the schedule of it tomorrow.

If I am completely honest, I really have no full idea what all this means yet. There is the possibility that I could have some peripheral vision loss or a field blank following the radiation. But truly, there will be no knowing until afterwards. I am prepared to face this head-on, with the most Hope, and strongest attitude I can possibly muster. There is no lying down for this continued fight. I will find myself on the other side of whatever this week has to offer being the best that I can bring to bear in this world.

There is much more sitting in my mind, but I have run out of the clarity to express it. Perhaps in the days to come I will find more words. And I certainly shall try.

Hope Springs Eternal

It's the first Tuesday of the new year and I am certainly feeling fine. Those of you checking in here are probably waiting for the results from last week's PET scan. The results pretty much look like the results from the scan three months ago. And that is a very good thing.

The last three scans have shown increasing uptake in the right and left hilum lymph nodes in my lungs. As the metastases progression was in the lungs, this is concerning. Last June was when the activity in the right hilum was notably increased (doubled) into the four point range. The two point range being normal for a reactive lymph node. "Reactive" merely meaning a node that is reacting to some sort of inflammation, infection or otherwise. At that time I had a biopsy of the right hilum and nearby nodes, all of which showed benign. (Yay!) However, we did escalate my PET schedule to every three months to keep a close eye on things.

My October scan showed another doubling in the right hilum, as well as the left hilum moving into the three point range. This most recent scan shows the right hilum with a very small increase from 8.2 to 8.9. The left decreased to 2.9. Cancer doesn't usually sit still. So these results show us that these are probably just reactive nodes and, other than keeping close scrutiny on them, we shouldn't find them alarming. They're keeping me on the three month PET schedule for now. So there will be yet another opportunity to try for radioactive super powers in March.

I was rather anxious about the results this week. As much as I am a true optimist, I battle with the dark shadow of cancer recurrence across my mind and heart. And I was not feeling optimistic about my appointment yesterday. It has taken me a while to come to terms with the results. Which might sound odd considering the good news. But I was expecting bad news and have had to make a u-turn in my mind. Now I am beginning to allow myself to think that maybe cancer is actually behind me. For the first time since this all started I am feeling the shadow of cancer and death lighten. Would it be too much to hope that we actually cured it? I've talked about the "long tail" and the 2% as being loads of people, and that I could be one of those people. But I never really believed it deep down. I think maybe I could believe it now. It feels like a very large step forward.

The Third Assiversary

Three years ago today... it was a weekday and I went alone to get the results from my colonoscopy. Clearly I wasn't thinking anything important of the appointment. Suddenly I found myself at the top of the first hill of the cancer roller coaster. Three years is a long time, but time is most definitely an amorphous construction and there are moments when that day feels too close or so far away I can barely see it.

The holidays and turning of the year already make this an intense and emotional time for most. Adding the "assiversary" to my year-end calendar indubitably intensifies these weeks. I try to use the increased awareness to be ever more grateful for all the good things in my life and the continued opportunity to spend this time with family and friends. To consider the year about to pass in the best possible light.

I'm passing this year's dark anniversary quietly and with deep regard. Tomorrow will be my third PET scan for the year. I'll have the results in the new year and will be sure to update again for the stalwarts who keep checking in here. Until then, I wish everyone the happiest of holidays and an absolutely glorious new year.

The long awaited update...

Yup. It's been quite a while. Of course I have been all sorts of busy since April. However I've also had plenty of time to write up a quick post letting the world know that I'm still healthy, happy and kicking around. But I often struggle with the online journal idea. And most days I'm simply not doing anything that feels like it is worthy of the words I'd struggle to find.

Nonetheless, here are the quick recaps for those of you still checking in here.

Travel:  Ireland was beautiful, easy, and full of magic moments. Lots of SCA events and weekend camping throughout the summer, including an extraordinarily fun two weeks of camping for Pennsic War. A week in Colorado which I hope to repeat next year. And a trip to Texas with family to see family which did my heart a lot of good. No trips on the horizon yet. Somewhere warm is on my mind for the late winter though. No destination yet, just the idea of somewhere with sun, heat, and a lack of snow.

Health:  Still physically doing very well. All systems working well and no problems other than those that come with being forty-something and a bit out of shape. There have been two PET scans these past months, one in June and then October with another lined up at the end of the year. The June scan showed some activity in a lung lymph node which we then went and had biopsied. Results came back benign (woohoo!). October scan showed continued activity, but too soon to go through the biopsy ordeal again. Currently on a three-month scan schedule until we can rule out any actual cancerous activity. My local oncologist retired this summer so I have a new one whom I really like. He's far more engaged than my prior doctor, and I'm looking forward to working with him.

That's all I have for the moment. I hope everyone is happy, healthy and warm. Thanks for checking in.

Springing in...

Looking at the visit stats for this blog shows that several of you have not yet abandoned the hope that I would show back up again and regale you with wild traveling stories and pithy insights. Even if it has taken me a couple of months to get back around to it. For a half a minute I couldn't recall my password. Telling indeed. But I am back for at least these few minutes and I hope my entertainment value has not waned. (tongue firmly planted in cheek)

What ever have I been up to? Plenty. I'm rather accomplished at keeping my calendar full these days. Helped out with the local SCA group's yearly event in February. Ran the dance classes and evening ball and hopefully helped to re-strike the spark for dance that will carry over to next year. Not long after that I spent over a week house/livestock sitting for some good friends in the Grand Rapids area. I got to play with their tractor/plow almost every day, though it was really too cold and blowy to truly enjoy. By March I was absolutely finished with the overtly cold winter here in Michigan. So the husband and I traveled down to New Orleans for a few days and enjoyed the warmth of spring with some friends while exploring the city. Followed that with a few days camping in Mississippi. It was still a little chilly at night but the days were glorious and sun-filled. Got to spend some wonderful quality time with one of my closest friends and had a great time overall.

Returned home and the snow piles in the yard were lower, but still no ground to be seen. So less than two weeks later I joined one of my girlfriends for a week in Puerto Rico. That was just a stellar trip! Temperatures in the seventies and eighties always and sun, sun, sun, sun, sun. We explored all over San Juan, drank wine on the beach under the stars, shopped local market plazas and fruit stands, did some salsa dancing, hiked the rainforest, swam in the ocean, ate lots of seafood and fresh tropical fruits, drove and explored the interior of the island, dropped in to Ponce, and fully defrosted ourselves. Definitely a highlight of the year so far.

I've been straight up busy since returning from that trip. I am definitely feeling the effects of spring with a renewed sense of activity. I've been seeing friends for lunch/tea, dancing, movie and concert dates, at least two of each in the last couple of weeks. Plus the day spent in Lansing with a girlfriend last week and I'll be gone all of tomorrow seeing the Samurai exhibit at the DIA with one of my dearest friends.

As a nice change of pace I will be mostly grounded for the next full month. Beyond one weekend and the occasional day trip, I'll be pretty much settled here in K'zoo as Spring finally gets sprung. I can already see the first buds bursting on the trees and bird activity at the feeders has jumped. The windows have been flung open the last couple of days to give the house a proper airing-out. And I expect a big spring cleaning in the next weekend or so. It is only a couple of weeks until the outdoor farmers market opens again and I have already enjoyed the first batch of chevre from a local dairy.

Spring is my favorite season. There is a sensation of "opening up" that I feel in everything. As if the world has been underwater and the sunshine is fresh air that all living things gulp with abandon. Restlessness translates into forward momentum which becomes targeted energy. Stretch, grow, breathe, bask.

I am full of positivity this new season. I feel more settled than I have in a while. Health-wise things seem to continue to be very well. No problems or pains or concerns and my most recent bloodwork and oncologist visit were normal and uneventful. I even inquired about having my chemo port removed. A year ago I would have said that I might not ever consider that, but if I did it would be at least two PET scans and a good year out. I may still wait until that milestone in June/July. But I started thinking about it a month ago and have already crossed over to serious consideration. It makes me feel very good about my optimism and general attitude.

No promises or guesses to my next posting. Until then my friends, thank you for checking in.