Wednesday, December 28, 2016

Assiversary the Fifth

Five years ago today I went alone to an appointment that would change the rest of my life. I was going in to get the results from my recent colonoscopy and had no real worries on my mind. Not long into the appointment my mind was racing and I hardly remember the details of it. Just the devastating part: you have a large cancerous tumor and we need to run more tests to see if it has spread.

I had never really been in the world of cancer before. My aunt had breast cancer which was easily cured with surgery and no chemotherapy. My grandfather had died a couple years before from multiple myeloma, but at an advanced age. I had one distant friend who had just gone through breast cancer and chemo and the like. But I had not been involved with their care; had not been close enough to experience the cancer journey with them. But there I was, thrown into that world and scared out of my mind. The next month was a complete rollercoaster of emotions, scans and tests, all while I continued to work full time and juggle the people in my world. By the second week of February we had a complete diagnosis and a plan of action.

It has been some crazy, whirlwind and busy years since that time. And for all the chaos and difficulty of 2016, it still rates as one of the best years of my life. I can top this great year off with the knowledge that as of today I have beat the five-year survival odds. And I am still doing my very best to fully live and be grateful for each and every day that I continue to have.

I have been a bit quiet here on the blog. As usual, it's been some busy times in my life and I am greatly looking forward to some settling down to come in the new year. I will be starting another round of chemo on January 4. And that will certainly curb some of my constant movement. Just last Friday I got the results from my most recent round of all the scans (CAT, PET, MRI). My doctor says it was a good news visit. No new activity in the brain, and continued stabilization of the remaining tumor. Low activity in the primary metastatic lung tumor. My bloodwork looked good. Though there is a new lesion in the upper left lung that has been causing pain and may end up getting radiation treatment.

As much as this was considered a good news visit, it was of course a little hard for me to settle with. I keep my hopes so high that I keep thinking someday I'll come to one of these scan results and the cancer will just magically have disappeared. And though I am inclined to keep my hopes that high, there is some pragmatic thinking in my mind that wonders if I should tone that hope down a little so that I find myself less disappointed at times like this. The chemo is clearly still working for now, and I'll be having some genetic testing done on my tumor cells to see if there are any clinical trials or immunotherapy that might work for me. We are starting to work to find a plan B to follow up the current systematic chemo plan A.

My doctor called me an "exemplary patient" because of my knowledge of my cancer and all the treatments I've been through, as well as my continued positive attitude and willingness to live the hell out of life. But that is just me being me. Trying to live the best I can "with" cancer. Underneath it all I know that I will be dealing with this for the rest of my life. And the consolation I find is in positivity, mindfulness and complete engagement.

Big high fives and fist bumps to everyone for making another year marker. And for not letting this disease overwhelm me in the process. 

Monday, November 21, 2016

Shadows in a Mirror

Negligent blogger back on duty...

And this is sort of a "live" blog as I'm currently sitting in the infusion center for number five of this round. Which means only one more to go for this year. Because yes, the year's end is nearly upon us.

I will get a nice break from the chemotherapy after the final session (in two more weeks) as my doctor has agreed to let me wait until after the holidays to start another round, if that is the route we take. Of course the plan going forward in the new year will depend on my next PET scan (mid-month Dec).

In the last many weeks since my last post, I have had another very successful MRI brain scan. It showed no evidence of the three smaller tumors, and the large one remains stable and continues to show less and less activity. This likely means it is slowly turning into scar tissue. And no new tumor activity! These are excellent results indeed.

The appointment to get those results had me thinking again about scanxiety. It is something I've gotten rather good at staving off in general. However there is something about the MRIs that still scares the heck out of me a bit. I don't think about it much in the week between scan and results anymore. But those few minutes from when the nurse leaves and the doctor comes in with the report, my nerves ramp up to 11. I feel it most after she has delivered the news and I feel the weight of the worry leave my shoulders. It was in that moment that I realized how much I had been metaphorically holding my breath and how very concerned I was about something other than positive results.

Living in the shadow of fear - this is a challenge for the late stage cancer patient who is living ~with~ cancer. At this current point of my treatment I am not expecting to get N.E.D. (no evidence of disease) or clean results from scans and doctor appointments. We, my team and I, are hoping for positive progression and to keep me as healthy as possible. As well as allowing me opportunities for the space and freedom to travel and live life as large as I can. And ideally to do this for many years. Eternal optimist that I am, I still hope for another span of time with Mr. N.E.D. That next affair is certain to be a whirlwind of a time.

I've spoken here before about the fear that sits deep in your mind, or on your heart, about recurrence and growth. Being touched by cancer leaves large and permanent scars; most of them not being of the physical kind. This goes not only for patients, but for caregivers and those truly closest to the patients. The work, the slog, the worry, the pain...it all takes a toll and leaves deep marks. In the quietest of times, when you are alone and the stream of your consciousness gets still, that's when you feel the chill of it pass by you. The smallest puff of wind that brings goosebumps and a deep melancholy. A moment that can linger or recede. This is where choice enters. Now and again it can be helpful, even cathartic, to remain in the sadness; allowing your whole heart to feel everything. To explore and allow all the deep emotions that we distract ourselves from daily. Clinging to the expansiveness of this release - that is the tricky place. After some time there I have to lean back towards the sun, towards the light of love and pleasures that are so prevalent in my world.

Perhaps that is where my "strength" comes from. That compliment that I more often than not eschew. I forget sometimes that my choice to stand "hopeful and smiling" does not come so easily to all. There are as many ways to approach our days are there are people on this planet. If I inspire or positively touch those around me, then I consider that a compliment that I am happy to receive.

Thursday, October 13, 2016

It's a very very mad world

I am past the halfway point through the second session of this fourth round of chemo. This week's pump has been named Percy (for both the poet and my old cat). Still mostly trying to embrace and accept the anchor that hangs off my shoulder for an exhausting 48 hour time span. This has been a more difficult week of it, but in about 12 hours it will be done. And I'll be able to quickly take my mind off of it when I meet a variety of friends for dinner and a Loreena McKennitt concert later this evening. My mind will continue to be sufficiently engaged and excited as I spend a long weekend with my sister, nephew and brother-in-law, and then follow up with a couple of days with my Paramour.

I'll come back down to cancer-earth next Wednesday for another brain MRI; continuing the every three months plan to keep a vigilant eye on my tumor-free brainy bits. Results of that won't be for another week of course, but I'll be certain to update when I have them.

Yesterday was yet another anniversary... they are coming fast and furious in this month of my re-diagnosis last year... the one-year anniversary of my brain radiation. That day stands in the top five of my scariest cancer days. I suppose you may be curious what constitutes that top five. As I began typing the statement about the top five I realized that I hadn't formally created that list yet. But it quickly coalesced into this:
1) The lung collapse and subsequent wide-awake chest tube insertion after my first biopsy. Still stands as the scariest moment of my entire life. There is nothing like feeling yourself being unable to breathe.
2) The initial diagnosis.
3) Going into my first major surgery ever for the primary tumor.
4) Learning I had brain tumors.
5) Brain radiation.

A difficult list to be certain. But, true to my positive perspective, it is easily balanced by an equally strong list of best things since cancer which includes new and stronger relationships, reclaiming and reveling in my life, and a few passport stamps.

These anniversaries do mean that Fall and early Winter have become weighty months for me. Which is a bit difficult as I always feel a slump when the cold weather approaches. (I suppose this means that Spring continues to have no contender for my favorite season. *smirk*) I was reminded of these anniversaries last week while I was traveling to California with a group of friends. At a quiet stretch of the drive, after the four of us had drifted in and out of conversations, I checked into FaceBook to pass a few moments time. As has become my habit, I checked the "On This Day" feature and it was a most interesting find.
(Oct 1, 2011, after 10 PM)
"So... have you even started any of the things you would do if you knew you had a limited time to live? Just asking hypothetically, BTW."
I cannot recall the exact memory of that evening. But I do know that I was in a transition period and moving towards two very difficult months. I was writing daily in my journal at that time, pondering and questioning my life and my choices. And also apparently asking the bigger questions. I know at the time of this post that evening that my answer would have been "no."

In one year and just under two months from that post I would be diagnosed with stage IV cancer. I had no idea... You rarely do. The ponderings of that night would quickly pale and fade against all the new thoughts, worries, questions and planning. I am certain that my FB post that evening was predicated by something I had watched or read earlier. Something that had me thinking about all the things I had not yet moved forward on in my life; thinking about the morass of my days at that time.

It's a strange thing that I have confidently said multiple times that I am a better person for cancer. Yet, I can now answer the question above with a solid, resounding "yes." And I cannot assuredly say that without this experience I would have made the changes within myself that have led to me to these happiest days of my life. It is a strange, unpredictable journey we make through this Life. We have no idea how strong we are capable of being until faced with true adversity. It is also through those most difficult times when we see the true heart of the people around us. You find your staunch supporters. You see more clearly the world and our place within it. You rise or you lay down.

So I continue to rise... even on the days like this one where I rarely left my bed and never changed out of pajamas. If nothing else I took some time to write; to explore that side of my nature; to put myself again out into the world. I will ask it again now... have you started doing what you want in Life, have you reached your goals or explored your passions, have you done best by yourself and the others in your world? Whatever the answer, do more... you will rarely regret it.

Thursday, September 29, 2016

Back on the sauce again...

I know, it's been awhile. The season has turned and the cool air begins to permeate into bones and homes.

Today is a new anniversary for me in this journey. One year ago yesterday (Wednesday) was my re-diagnosis. And on this day (Thursday) I will have learned about the brain tumors. It was the beginning of a very difficult fall season.

I am beginning this fall with the results and consequent effects of my latest PET scan. This is number 14 (a particularly favorite number of mine), and still no superpowers. But... we did get some good results. The left hilar tumor that seemed to be non-responsive to the last round of chemo seems to have completely disappeared due to the one-two punch of radiation-chemo through the summer. The primary metastatic tumor in my right hilum has gone down in uptake from 7 last scan to a 3.6 now. That's a beautiful 50% shrinkage. Though it is still too high for our liking and my oncologist recommended that we continue with another chemotherapy round starting yesterday. So now I am equipped with yet another pump full of 5-FU through tomorrow. But that does mean that one session of six is "in the bag."

I struggled with the results from this PET yesterday. I really had allowed my hope for a cleaner scan to elevate to pedestal-like proportions. And the fall from that was a bit painful on the figurative tailbone. I was sad for the first small while, and then I tried to get mad. But anger is not an emotion that comes easily to me; it instead becomes some emotional overwhelming that just seeps out of my eyes. So I sat in that space and was significantly annoyed instead. Once the routine of chemo started I began to right myself. Chatting with my neighbor one chair over also helped to remind me of the reasons we slog and fight through this cancer crap. By the end of our conversation, and a wonderful greek salad delivery, I was nearly back to my chipper self.

I did have some nausea issues with this session. Woke up today feeling better, though still a little worn out. I expect the upturn will continue once I get the pump off tomorrow afternoon. This means we are back on the every two weeks schedule, and my next two are already scheduled (Oct 11 & 25). Which means... ! dun dunh da dun !... that I'll be blogging in a somewhat more regular way.

Since my last post I've done lots of course. Biggest of all being going to freaking Paris! And I leave this Friday for Southern California for a week. An update about Paris and the space between will have to come another day. Perhaps I will even do a bit of writing these next few days or in the week to come while I bathe in the warm California sun.

Thursday, August 18, 2016

War *unh* what is it good for?

Hello and cordial greetings! I have joyously returned from my campaign traveling to the War in Pennsylvania. Such a glorious time was had. I had a spacious dining fly "porch" that quickly became dubbed the "champagne lounge." Ironic, considering we had no champagne. But there *was* lots of sangria. Or, as one new visitor called it, shangri-la. And so the evenings passed fairly wine-soaked, and the days passed slowly and melting-ly in the heat of the sun. I had two goals for this year's War, and I can say with confidence that I successfully attained them both. The first was to take time for friends and campmates - tending requests for visits; making a hospitable space for all; spending quality time with those I truly care for. The second was to find a place of temperance. This is somewhat related to the first. To balance my time, my attentions, my wine consumption, my resting, Me. And so it was... though, it was the laziest Pennsic ever for me. There was tons of lounging with music and books and conversations. It was a true vacation this year.

Upon my return, I jumped directly into the last session of this third chemo round. Had more nausea than usual this time around. And I slept most of Tuesday into oblivion. I'm certain some of that was resting from my vacation. But even through today I've been wiped out. Since the pump has been off this afternoon, I have felt a bit peppier, though not near a hundred percent. I expect the morning tomorrow will find me feeling much better.

Next on the cancer front is a PET scan in the middle of September. Results the third week of the month, and, depending on the report, possibly starting a fourth round of chemo instantly. However, I am hoping that the report, post radiation and this last round, will be clear enough for a break in treatment.

Nothing else has happened in the last couple of weeks. Vacation and all the fun that it brought. Now I start to prep for my trip to Paris in just over two short weeks. Yay!! Super excited to go to one of the most iconic cities in the world; a place full of wonderful art, amazing food, fantastic wine, stylish population, and loads of history. It is only a 6 day trip, but I expect it to be fantabulous.

Don't believe I have any pithy, optimistic bits for you this evening. So... I hope you are all well or working your way towards better. *mwah*

Wednesday, July 27, 2016

I got some wild, wild life

Good evening people of the internet. A few bits of news to catch you all up on, and ongoing adventures to follow.

I had another brain MRI last week and received the results on Friday. All good news. First off - no new tumors! Woot!! Secondly, the large tumor on my occipital lobe has stabilized and there is still no evidence of the other three small tumors. So it looks like the radiation did its job. Of course there will still be MRIs every three months just because.

Had my first EEG this past Friday as well. Trying to decide if I need to stay on the anti-seizure medication I've been on since my "episode" back at the end of September. Sounds like the neurologist wants to keep me on it for now. But I will be meeting with him again next month to talk more about it. Despite staying awake all night in order to be able to sleep on demand for the EEG, I failed to fall asleep on demand. Though I was falling asleep at the beginning until they woke me up with flashing lights and breathing exercises and a very uncomfortable lump of towel for a pillow. Ah well. Appears they got what they needed for the scan anyway.

On the chemo front... fifth session for this round is in process. Monday was infusion and I've still got this pump on. I haven't named this one because I've been too busy packing many, many bags. My toleration is okay this time around. Pretty loopy on Monday, but peppy enough today to be productive.

So what am I packing for? Most of you already know the answer to this - the great Pennsic War. Two weeks of camping in a medieval pavilion in the hills of Pennsylvania with more than 10,000 other SCA folks. As this is my only camping event for this year, I'm just that much extra stoked about it this time around. I've got a half filled car and am currently surrounded by almost enough bags and baskets in my room to fill the rest of it. Not much left to do except play Tetris with it all tomorrow. First time packing for this event in the new Subaru and I'm hoping it all fits.

When I return in two and a half weeks from my vacation, I'll have the last chemo session for this round. Probably first of September for my next PET scan to determine whether we take a break or continue with more chemo. Obviously I will keep you informed as that all comes to pass. Until then, I hope everyone finds some joy in these coming weeks. And for those of you headed to Pennsic, I look forward to seeing you very soon!

Wednesday, July 13, 2016

Wait... What?

You are probably expecting some information about my MRI. But I am here to tell you that I was entirely wrong about my own schedule. We will just blame it on the chemo brain and continue to pretend that I'm not getting older and just forgetting stuff.

So... I *did* have a brain thing scheduled for last week. But it was just a meeting with the neurologist to discuss keeping me on or taking me off the anti-seizure medication I have been on since my "episode" that led us to the first MRI that found the brain tumors. As I was alone when I passed out last September, no one can know if I actually had a seizure or just passed out. I've reduced the dosage and they are uncertain if I am now taking enough, or if it is even needed since I have had no other episodes or vertigo or issues with my head. I'm scheduled for an EEG (both awake and sleeping) at the end of next week. Which will be when I also get the results from my next MRI which is this coming Monday. And yes, I even just double checked my schedule so I don't fib again.

Before then, however, we have a new chemo pump (Margaret). Yesterday was chemo session number four - only two more to go for this round. My best girl was with me again and made sure I was properly fed, watered, entertained and safely deposited back home to sleep like crazy. Other than a woozy head and a rumbly tummy yesterday, my toleration this round is very good. I ate a whole dinner last night and even three meals today. My hydration levels are fantastic as my many, many middle of the night potty breaks made clear. I have reached that point where I am completely tired of this weight hanging off my shoulder and counting the hours until tomorrow afternoon when I'll be free of this infernal device. Margaret, you're a bit of a pain in the ass; properly named. As this is the poem by your namesake that led me to your naming.

You fit into me
like a hook into an eye

a fish hook
an open eye

Between all the medical stuff I was able to get in some more excellent family time and some wonderful catching up with my aunt from Texas. There were a couple of solid days hanging out with some of my girls. And this weekend I was honored to attend an "adventure" wedding of some dear friends. Bride-napping, spell casting, art, spontaneity, flash mob, a serenade, kidnapping, a pirate battle, harmony, toasts, vows, dancing, and smiles from face to face everywhere. Such a memorable day with many amazing people. And *after* all that, I even got to visit a museum and get some of my photography on. Whew!

This is why I am excited to wake up every day. Even on the tough days when I am literally weighed down by my disease. There seems to be some possible happiness around most every corner. I am always seeking it. Turn your face to the light my friends... be it the warm sun, the growing moon, or the love-light around you... seek the happy, or create it with your smile.

Friday, July 1, 2016

C'mon, take on me

On Wednesday I jumped back into the middle of my current chemo round. This is/was number three of the six sessions. My portacath was being cantankerous and it took 2 1/2 hours to get a blood return before we could start the infusion. And of course it was a day when I forgot to put lidocaine on the port, so they punched through *three* different times with needles trying to get things going. Ugh. After two rounds of tPA (tissue plasminogen activator) to break up the build up of blood clot(s) at the port entry, we finally got a very strong blood return and there was much rejoicing. Immediately tempered by the recognition that we could go through with the day's poisoning. It's a strange world to live in sometimes.

I've been feeling pretty fantastic during this 5 1/2 week break from the chemo. I hadn't realized how slowly it had drained me over the seven months I'd been solidly on chemo. And I figured this week's session would either be tolerated very well, or would hit me like a ton of bricks. I am happy to report that it has mostly been the former. Though today has been all about the sleeping.

This makes us halfway through this (hopefully last for a while) round. And I expect to be finishing up in mid-August.

In the meanwhile between last post and this one I've been, per usual, a very busy gal. Got a lovely visit in with family both near and far and, most excitedly, got to spend several days at the beach in the Outer Banks in North Carolina. First time in the Atlantic Ocean and it was glorious. Met a whole crew of new people, hunted for shells on the beach, poker, karaoke, late night wave watching, dolphins (!), plenty of pool and hot tub time, and a luxurious two-day drive back to Michigan. Best vacation I've had in a while.

Today I will go and have Catherine (current pump) removed in a couple of hours and then head right back to my sister's place to visit some more far-flung visiting family. And next week will be another brain MRI. I'll have the results at the end of the week, and will be certain to make another update at that point. Until then, I hope y'all are enjoying the glorious summer days.

Sunday, June 19, 2016

Egads!!!

So... it has been a month since I have posted anything. And being in the middle of treatment and all, this is quite a space to have left you all in. Whatever have I been up to?!?

Mostly, and most boringly, I've been doing radiation. Three weeks to be specific, and as of Thursday this last week, done with radiation. We just did three weeks, with two very small fields on both the primary and secondary metasatic tumors in my lungs. And in a week and a half I will jump back into my chemo schedule. There are four more sessions to go in this third round. I am hopeful that this radiation will allow me to have a more extended all-treatment break at the end of this chemo session in August.

Daily radiation had me Kalamazoo-bound for most of this last month. (Though I did sneak in one little weekend excursion.) But some far-flung girlfriends have been in town and I've certainly been getting out and enjoying the early summer in style. There was the local Art Fair at the park and on the walking mall. Throw in some movies here and there at my favorite downtown theater. Tea and patio/deck/pool time at various friends' places. I was almost made a princess. Plus, there has been some live music, local beers, patio games, a proper bbq, new friends, and even some dancing. I may have cancer, but the living is still so fine.

I've been in a bit of a weird state today. Because Facebook reminded me that as of today (technically yesterday) three years ago, I was declared clear of my cancer. We reached that enviable state of N.E.D. (no evidence of disease), which was the first step towards remission. After a year and a half of fighting this thing, I had "won."

But really, I knew it was only temporary. That may be one of the things that your friends with cancer history don't tell you... you are always worried. For years, you will stay worried and vigilant because the damned bitch of cancer might be back at any moment to bite you in the ass and remind you of your fragile hold on this thing called Life. So you throw that voice of worry into a box in your mind, and you focus on the days you have, and the good people in your life... and you don't stop long enough to let the lingering echoes of that worried voice resonate in your mind.

So here I find myself... at the crossroads of the anniversary of my NED status, and just starting a week and a half of vacation in the middle of this current eight-month long treatment schedule. No longer NED, no longer safe, no longer secure. And yet, I am so very happy in these recent days. Again, I am finding that each day is a gift, each person in my life is a blessing, every small pleasure is something to celebrate. I take nothinng for granted. I fill my days with people and pleasures. I shall not be taken down by the gravity of my condition or the desperate state of our world and times.

Today I am alive. Today I have kissed the forehead of my adored tow-headed nephew more times than I can count. Today I have felt loved. Today I have laughed. Today I have grown just a sliver closer to my sister. Today I enjoyed and reveled in a perfect sunny summer's day. Today I sat and watched the gibbous moon move across the sky. Today has been good. Tomorrow will also be good. But... I am here, just right here in this moment. Writing these words that I hope will touch someone. Tomorrow will be a blessing, another lucky day, a chance for more opportunities, a time to share love. And I will revel in the opportunity for another day. Join me friends.

Tuesday, May 17, 2016

Back to the gypsy that I was...

So we are back on the chemo pump again. I'm continuing with my naming practice to attempt an amount of befriending in my mind. This one is Jarvis. Too bad it doesn't talk to me.

This makes session two of this third round in a row. However, it does appear that a break from it may very well happen after the end of this round. Which, and this is where the mixed news comes into the picture, will be into August at this point. I received a phone call last week that my radiation oncologist wanted to see me soon. Odd, considering I had no reason to hear from her until my next MRI in July. Turns out that when my case was brought up to the tumor board two weeks ago, they decided that they wanted to address the left secondary metastatic tumor that has increased in uptake and size in the last three months. It could be that this tumor is clone cells and could have already mutated to no longer react to the chemotherapy regimen. However, no tumor can escape the wrath of radiation. We (my medical team and I) have always taken an aggressive tack in regards to my treatment. Being as healthy and young as I was from the beginning of all this, I've been able to handle and bounce back from everything we've thrown at me. So we continue to stay aggressive.



This means that we are going to shoehorn in some radiation in the middle of this chemo round. At first we were only going to radiate the left tumor, but after another meeting we've decided to do two small stereotactic radiation fields on both the primary and the secondary tumors, left and right. Because why not? It will absolutely have an effect and, if we are very lucky, will turn the tumors into scar tissue and no longer metabolically active tumors.

I have already been in for my CT simulation to get my triad of tattooed dots across my chest and to establish my breathing pattern and movement so the radiation fields can be made as small as possible. I'll start the radiation treatment next week. It will be a course of 15 sessions over three weeks time. I'll have to go in every weekday for about 30 minutes or so. Which means I am K'zoo bound for a little while. I will restart the chemo at the very end of June and should finish mid-August. If the PET scan in August shows excellent reaction to these treatments, then we are definitely taking a treatment break for a couple/few months. My guess is that there will be another PET scan three months after the August one, and we will see what activity there is (or isn't, fingers crossed) and make new decisions at that point. Meanwhile I am already making plans for trips to Paris, California, and possibly Italy in the fall and early winter. Exciting times possibly coming up!

Also meanwhile, I'm in the middle of the moving process. My roomie and I have decided that after a fabulous year of living together we are both ready for a change. By the end of this week I will have moved back into Kalamazoo proper with a pair of wonderful new roommates. Everyone all around is excited for the move and the changes. And the first batch of boxes has already been dropped off. Another beautiful new chapter is beginning.

My lovely chemo buddy puzzling
over the puzzles.

Tuesday, May 3, 2016

Trips and Pets and Weddings, oh my

Happy May to everyone. It's a lovely sunny, warm day here, and as they always do, these days lift my mind and spirit. I've been a very busy girl again lately. Went to spend some time with one of my best gals in Lexington a week and a half ago. Had a great time exploring that lovely city. Spent most of a day taking pictures in the cemetary and also found an amazing resale shop where I picked up more items than planned. Had a perfect couple of nights on the town and another perfectly relaxing one just hanging out together. Then this past weekend, her and I headed to St. Louis to attend the wedding of some good local friends originally from that area. On the way down we stopped to visit some very dear friends that I hadn't seen in ages. A wine-soaked night of catching up ensued.

The wedding was positively wonderful. Everyone was impeccably dressed, though the groom's adoration outshone all else except for the bride's beauty. Rain drove the ceremony inside, but the punctuative nature of the storm was perfect throughout. Starting with the deluge only beginning just as the bride began to walk down the aisle. Apparently, the gods approved. Our table companions were friends and strangers and the conversation flowed easily. The DJ was great and most everyone got their dance on. Just a wonderful time and I was honored to be invited. Drove very close to the arch a couple of times, but otherwise had no time to visit the city proper. We did chat about making a future trip to do so though.

Health front wise: I started my third round of chemotherapy yesterday after getting some very positive results from my latest PET scan. It appears that the primary metastatic lung tumor has reduced uptake from 13.6 down to 7.0! I was hoping that it would be down to the single digits, but this was far more than my cautious optimism expected. If the chemo continues to have this strong of an effect then we may very well be looking at radiation and a treatment break in the fall. My oncologist took my case to the tumor group today and at my next appointment in two weeks we will discuss what they had to suggest. My optimism has been cautious lately, but these latest scan results and the continued work my doctor is doing has my hope outshining the caution again.

So yes, another round of chemo has begun. Still on pump for the first one, but feeling somewhat chipper still. Likely helps that I'm not too far up from an easy afternoon nap. No serious issues with these last few rounds. Long as this good toleration continues, I'm expecting a continued busy and wonderful spring.

I've noticed these last couple of blog posts that it is getting simpler and faster for me to write. I believe much of this has come from my truly being more open and honest about my journey through cancer and the rest of this life. I'm not trying to be entertaining or epiphanize, though that may occasionally accidentally happen. Perhaps if I had more epiphanies then I would be writing more often. Or if I sat still enough in one place. *smirk*  With that said, until the next time I sit my butt down, adios my dear ones.

Wednesday, April 20, 2016

Another in the bag...

So Monday was my last chemotherapy session in this second round. Met with my oncologist to discuss the next step and to get another PET scan scheduled. It appears that the next step will be... another round of chemotherapy! He already has me scheduled in on May 2 to start again. That will also be when I get the PET results. Since we are trying to keep the primary metastatic tumor under control so that it doesn't throw any additional mets anywhere, another round of chemo is our best (and safest) choice for the time being. Perhaps if there is lots of great progress/shrinkage at the end of this third round, then we may consider the radiation option to give me a bit of a break from the every other week chemo schedule. For the time being however, I am continuing to tolerate and recover well from this treatment, so we continue.

This may alter some of my summer plans, but not the big ones. They'll continue to work around my schedule as I wish. So if I choose to take an extra week between sessions to go camping or something else exciting, they are happy to work around that. My new vision of a very long road trip in my new car and a teardrop trailer will be put off until fall or so.

This Monday's chemo session went well. I did pretty well again and even had a good appetite. Continuing to control the nausea and other unpleasant issues with no problems. Slept a TON last night, and still feeling that drag from too much sleep. That, or I'm just still a little wiped. This week's chemo pump is still going, so a couple more hours before I'm actually through with this session. I'm hoping for a quick bounce back tonight. I have a date with one of my best girlfriends for the next couple of days.

Otherwise, I'm doing rather well and my attitude is firmly in the "happy as a clam" range. The true arrival of Spring and warmer weather has brightened me right up. I've been taking some time each day to sit on the deck in the sun with a cup of tea and do some mindful meditation. This was one of the best things I did for myself last spring and summer, it really helped to center me. And it is a habit I plan to keep up with. Also got my first bike ride in for the season. Getting stronger is a priority this spring and summer. The healthier I am in every way the better I'll continue to make it through the treatments.

Nothing else new to share at the moment. I am still keeping myself rather busy in general. This week's end with one of my best gals, and a wedding in St. Louis the weekend following. And lots more to come in May. I'm looking forward to another phenomenal summer. And looking forward to seeing all of you in the weeks and months to come. Sayonara for now!

Monday, April 4, 2016

I'll be a happy phantom

Howdy there folks. Per usual, it's been some busy times around here. Had another brain MRI a couple Thursdays ago. Other than it taking three people seven tries to get an IV run, it was pretty uneventful. There was the scanxiety-riddled fretting to follow. But I found distractions for the week before my results this last Friday. Turns out all three of the small brain tumors have now dissipated. The largest tumor has continued to reduce in size, currently down to 12mm from the last scan size of 17mm. This makes it about half an inch in size now, and likely continuing to respond and shrink. And the best part of this update is that there are no new tumors or activity. Woot!! I will keep getting MRIs every three months. So July for the next news on that front.

The next most exciting news is that I've just replaced the Matrix fairymobile I loved so. An experience I haven't shared with too many people is that I had an accident back in January in one of the big snowstorms. I was not hurt at all, and no other cars were involved; just me and the center divider. Being a 12 year old car though, the cost to fix was too high for my insurance company's taste and they decided to total it out. I did get quite a nice payout for the Matrix though, which allowed me to shop for a good replacement. The searching process was frustrating because I wanted another manual transmission. And let me tell you, that makes a massive change in your search response. A general search for hatchbacks and wagons would bring up (as one actual example) 154 used cars in my radius and price range. Check the manual transmission box in advanced search and that number came down to 8. That is 5% of the initial response. Two of those were larger cars than I was interested in, and one wasn't even a manual according to the pictures. I had come to a point where I was willing to acquiesce to an automatic for the right car in every other way. Luckily I had the luxury of time to continue searching and finally found what feels like the right replacement. It is a 2006 Subaru Forester in a lovely silver color. Not only does it have the magical manual transmission I wanted, but it also has a tow package. This has me very excited for some road trip possibilities. Vanity plate is on and soon there will be fairy stickers and decals galore. I've already got over 10 hours of driving in on it, and it feels great so far.



More exciting things happening lately, is that I got to spend time with this handsome fella. He is a silly one, my nephew, but quite the sweetheart when he's not otherwise being a typical three year old. He has reached the "why" phase, which has me rather excited; though his parents are waning on it already. But I am more than happy to give him long scientific answers to each question until he becomes so baffled that he changes the direction again. It's quite entertaining and already made my sister smile and shake her head a couple of times. I'd call that a win-win. And the fact that he insists I ride in the back next to him is positively endearing. Though the Jeeves comments to the front aren't always so appreciated. Sometimes it is just about amusing myself.

What more, what more?

That pesky chemo session number five was upon us today. I had to tag team my chemo buddies, but those gals are the best and took fantastic care of me. Home, in the toasty pajamas for what I can only hope is the last truly cold day/night of the season. Feeling okay. Just a bit wiped out. But very on top of the food and hydration today. I might even have something like a proper full dinner soon. More compliments from the nurses about my attitude and style. Apparently being an informed, self-advocating patient who also smiles a lot is not the majority. I was recently called an oddity by a friend, (a compliment I will receive rather heartily), and this continues to bear out as some kind of truth.


I know there is more on my mind, but the edges are all a bit fuzzy right now and anything resembling intelligent and thoughtful thought might be off the menu for the rest of the night. Rest assured I am still doing well. I can only hope the same for all of you out there. *mwah*

Tuesday, March 22, 2016

A Wandering Pondering

This morning I find myself at a hospital; here for a friend and not myself. (A scheduled and expected surgery; she's already done and in recovery and awake.) They all smell the same -- hospitals. And even when they try to make them feel warm, there is an underlying sterility on all the surfaces and in all the people. I tune into the open WiFi and eventually find my way to Facebook, as you do. There's a relatively new function that allows you to look over your postings from that day through your years on FB, and share it with a new reaction or new thoughts and such and whatnot. I enjoy seeing this mini history of myself. It's a good moment of mindfulness for me. I sit and try to bring back the day and the thoughts and moment that brought about the choice to share this contemplation, photo, video, meme or otherwise. It forces my brain to work and remember, and brings me closer to my Self's center as I attempt to commune with my younger self.

Today, this was in my "Memories":
4 Years Ago Today     Thu, Mar 22, 2012
"Feels pretty lucky to accomplish one thing in each day right now. Today, I baked cookies."

This is most interesting as a memory for me today. Four years ago I was barely three months into this cancer journey. This post was one week post a five-week radiation/chemo round and I remember I was completely wiped out and dealing with pains and side-effects. I had already stopped working and the days were just hard. I was also dealing with this whole new idea of short term disability and what was I going to do with myself in the days and weeks to come. So here I am today recovering from a hard infusion day yesterday. One where I was just tired of this whole thing - the chemo, the cancer, the constancy of it. But today I had a purpose and and a friend to support and it makes coming up out of the darkness so very much easier. As at my last infusion (which I am aware I did not at all share with you -- bad blogger, bad!), my energy has been good and recovering quickly. And no nausea issues, which had been an issue in prior sessions. So being here for someone else is not too much strain on me and Oscar.

I clearly was choosing some optimism and self-indulgence on this day four years ago. I don't remember those cookies, but my description in the comments make me want to attempt a recreation. "A bastardized peanut butter cookie recipe, using almond butter, chopped almonds, extra vanilla and more salt." I am certain the roomie will approve and we shall enjoy the fruits of these mental labours of mine today.

It is heartening to know that I have continually pushed through even the hard days of this journey with some sense of positivity. Whatever adaptability skills I picked up in childhood, I am thankful for them.

The week before this was an epically fun and wonderful time. I was surrounded by friends new and old and experienced the quality of this community I have chosen. I was told, multiple times, that I was an inspiration to people. And every time I was humbled by their words. I'm just being me, and attempting to be my best me (I stumble, but I'm clumsy like that). It doesn't feel so very special to me. But I am grateful for the compliments and they do help lift my heart. And I do so believe those emotional and mental spaces are as important to keep well as the physicality of me.

Coming off the high of last week and right back into treatment and the quietude of these first days, clearly was a more difficult transition for me. Uncertain why that is, however. I've come off many great weeks and weekends with family and friends recently. It has been very nearly six months since re-diagnosis. Perhaps it is just the wear finally beginning to show. I'll have to spend some quiet time with myself to ponder.

Monday, March 21, 2016

The Live la Vida Loca

10:30 AM
Another Monday at the cancer center. For the first time since this started up again last fall, I woke up and just didn't want to do it today. I had such a good vacation and adventures in NOLA and at Gulf War, and I'm feeling pretty good. Just not excited about the downward slide that today will take on me. So after an additional tap on the snooze button and internal whining, I dragged my ass out of bed and got ready anyway. A dress, scarf, my blue cowboy boots... fake it 'til you make it, and my mental energy for the day has increased. But I'm just not pleased today. S'alright though, because that's perfectly normal. And I have a very enthusiastic chemo buddy with me today. So she is certain to keep my spirits high no matter how the chemo treats me today.

11:25 AM
Been hooked up, borg-like, since my last post. Pre-meds are finished and now on to the Avastin for a half hour. Then we'll get into the rough stuff after that. For now, more online videos and chatting about vacation and warmer climes.

12:12 PM
And now comes the actual chemo. Which means I'll be out of here by 2:30, relatively early day. I might have mis-titled this post today. Not the craziest of times here.

12:25 PM
We are apparently playing dueling laptop games here though. Posting on walls rather than turning our screens to share. Silly chemo buddy!

12:55 PM
As I expected, it's wiping me out today. Probably something to do with practically no sleep a couple of nights ago while road-tripping home and the barest of naps to recover. Though I did sleep the sleep of the dead on Saturday night. A full nine plus hours without a single wake-up in the night. Perhaps this means lots of napping and catching up on rest early this week. Not a bad thing.

2:30 PM
I actually ate the majority of my breakfast *and* half a sandwich for lunch! I am on top of the food and hydration today. Now whether I want a whit of food for the rest of the day is up for debate.

Just got my 5FU push and they are hooking up my pump now. I think I shall call this session's pump "Oscar." Maybe that will make me hate it just a little bit less.

This also means that the live blogging is done for the day. Yup.... Th-th-that's all folks!

Monday, February 22, 2016

Don't burn the day, away

Another Monday in the chemo chair. Session number two for round number two. I'm feeling the energy being sapped from me as every drop drips from the two plastic bags hanging above my head. It is hard to explain how it feels as there is no particular physical sensation in which to refer. A general physical malaise that starts slowly and then overtakes until I feel completely off-kilter within my own body. No pain, and rarely nausea these rounds. Just a broad sense that something isn't right. And of course it isn't... I'm being actively poisoned. The whole idea of chemotherapy is a little ridiculous. But it is working, and it is the best tool we have to use, and it's a hell of a lot better than it used to be.

So for one day every other week I will sit here without much complaint. I tend to complain more about that stupid pump and the additional 46 hours of constant 5FU chemo (yeah, Fuck U too chemo). Though I do try to keep the griping to minimal levels. After all, it is only three days out of every 14 that I am going through this and really off my game. That's a split of 21% and 79%. In my mind I am rounding that up to 80% of my time is mine and the good days. Because I choose to make them good days. I was driving around in our beautiful momentary spring-like weather this last week and listening to some old Dave Matthews cds. Sometimes a song leaps out at you that you never really noticed before. And so it was with Pig (see video below) during that sunny afternoon.

Some of what captured me:
"Is this not enough, This blessed sip of life. Is it not enough, Staring down at the ground. Oh then complain and pray more from above. Greedy little pig."

"Wash out this tired notion, That the best is yet to come."

"There are bad times, But that's ok, Just look for love in it."

And of course my title for this post, "don't burn the day away."

This writing, even in the middle of the hardest day of it, is my way of positively appropriating the day. Not letting it just entirely burn away. Reclaiming some piece and making it my own. Reaching out virtually to the people I love and taking that in to carry me through the more difficult times. And a reminder to all of you of the impact you make upon me. "We need the light of love in here." I'll make a bargain to shine my love light if you shine back.

I know this can kind of sound like all those corny cliched lines from countless motivational memes. But there can be truth in them, and I honestly believe attitude comes down to choice. I've been complimented many times for being "strong" and "heroic" and it is often a difficult compliment to accept. I don't see myself as being strong; I see myself as taking the only valid road and attitude that suits me. However, I have come to understand that the sunny side of the street is not the only side to choose from and it takes some wherewithal to keep walking. I see the wear and the struggle, and sometimes the defeat, in the patients around me every time I come to the cancer center. All of these people going through their own journey or battle, fighting to keep themselves when so much is taken away. This is a hard thing and can completely overwhelm you. I've had many of those days myself. And it was hard to crawl up away from the easy slide down into depression and apathy. Somehow, through natural neurological wiring and choice, I've found that shadows and cages simply don't suit me.

And so, now that they've unhooked me and attached my best friend for the next couple of days, I'm flying this coop and looking forward to settling in to my home nest for the rest of the day and evening. Adios for now, and don't forget to check out this fabulous song.

Pig, by Dave Matthews Band from Before These Crowded Streets

Wednesday, February 10, 2016

Three tomatoes are walking down the street...

Time to do a little catching up.

I had my 12th PET scan last week Monday. Alas and alack all over again... no new superpowers. But the results from the scan were very positive. The two metastasized lung tumors showed positive reaction to the first round of chemotherapy. The left tumor shrank and had reduced uptake of over 50%, almost putting it in a normalized range of metabolic activity. Which means it's almost not worth worrying over. The tumor in my right lung had shrinkage of about 40%, though it is still worth worrying over. But as the FOLFIRI cocktail seems to be doing its job and my bloodwork this Monday was all in positive ranges, we started a fresh 6-session round again this week. I only have a couple more hours before I get the 5-FU pump taken off and that will be the finish of session one.

My medical oncologist was very upbeat in our meeting on Monday. The updated plan for the time being is to (1) do this second round of chemo, (2) have another PET scan and, if the results are similarly positive, then we can (3) do a round of radiation on the lung tumors. The advantage of moving to radiation is that we can then take a break from any treatment for a few months. If we follow this plan and I am reading my calendar correctly, then that means that I should be treatment free by early June. And *that* means I'll be able to truly enjoy the summer - a wedding, couple of camping trips, 50-Year, the beach for a week maybe, Pennsic, possibly abroad to Greece in the late summer. And I am stoked about all the potential of a great summer and fall.

To clarify, and ground everyone a bit, remember that we are not looking at a cure for me. We are controlling the cancer as best we can to give me the best quality of life for as long as possible. And there is still the unknown about how the brain tumors are doing. The radiation we did back in October did cause some shrinkage (and one seems entirely gone), but we won't get an eye in on their progress until my next MRI scan in March.

I, of course, remain persistently hopeful and work hard at staying positive. Optimism may have bitten me in the ass a time, or five, but it's still my favored mindset. There's always so much more new to see and do and converse about; my curiosity continues to drive me relentlessly forward. I may not have gotten the sudden ability to fly, but my soul is a wild, uncaged bird. And, yes, there are bad days. I just choose to keep my focus on the good ones.

I am open to conversations about all of this. I expect I will see many of you in the next few weeks at Val Day, or Gulf War, or personal visits. *This* is my favorite part of the days to come - seeing all my wonderful, loving peeps and basking in the joy of you.

Monday, January 25, 2016

Mini Live Blogging

Good afternoon everybody! Coming to you live from Kalamazoo -  the smiling-est, punk-iest, chattiest, fashionista chemo gal.

Been in the poked and prodded stage for a few hours now. All the pre-drugs have been doled out and I'm into the proper chemo infusion. (How do ya like the taste of that shit, Mr. Tumor? That's right, drink it all in and DIE DIE DIE!)

Might be feeling a little cheeky today.

My sister is here with me today. Working while I constantly bug her with little anecdotes and conversation.


2:55 PM

It is wiping me out today. One minute away from the end of my infusion and then strapping on that damnable pump for two days. But this does mean that a nap on my couch is only about an hour away.

Nope, more than a minute away apparently. The infusion machine has lied to us! See... *this* is why you come around for the "live" blogging. You never know when the current will change!

3:15 PM
Done. Super wiped. Thank goodness for a super indulgent sister to take care of all the things. Thanks to those for checking in.


Friday, January 22, 2016

Just an earthbound misfit

How about story time with Victoria this evening? We go to the realm of Greek mythology, one of my favorite wells for stories, to talk about Daedalus and Icarus (a very brief retelling). Daedalus designed the labyrinth on the island of Crete for King Minos to cage the Minotaur. He also came up with a plan to help Theseus escape the labyrinth once the Minotaur had been killed. For this, Daedalus and his son Icarus were imprisoned in the labyrinth by King Minos. As they could not escape the island by sea, the only way left was by air. Daedalus created two pair of wings made of branches, string, feathers and wax. He instructed his son on how to fly with the wings and warned him to not fly too high and close to the sun. They donned the wings for their escape and Daedalus led them into the air above Crete. Icarus was young, and immediately was caught up in the delight of flying and drawn to the heavens above. In his rapture, he forgot his father's warning and flew higher and higher. In short time he was close enough to the heat of the sun for the wax in his wings to soften and begin to release its feathers. As the feathers fell away Icarus was no longer able to ride the air and fell into the sea, which now bears the name the Icarian Sea.

This story came to mind a couple of days ago as I was listening to my favorite Pink Floyd song, Learning to Fly, on the radio. The station then played Ziggy Stardust, and I was then reminded of the latest thoughts I'd written down for the blog about the battle language of cancer. It was interesting to me how the song, the story and my notes all seemed to swirl and tie together in my mind.

You see... I've always considered Icarus to be a kind of inspiration. Given the opportunity to reach for the sun, to grasp Apollo's hand, to see the world from such heights - sign me up. Yes, it is a risky endeavor. But life itself is a risky endeavor. And I have always been a "both feet in" kind of gal. Driven by my insatiable curiosity and eagerness, I often find myself starting at the deep end of any endeavor. This sensibility has only increased in the time since my diagnosis.

Pink Floyd says: "A soul in tension that's learning to fly; Condition grounded but determined to try." And that is exactly my current state. Cancer may be slowing me down right now and limiting some possibilities, but I am determined to rise above it. I will not be imprisoned by the labyrinth of treatments, appointments, scans, side effects, worries, and the dirty mess of it all. I will always fly to the sun when given the chance. I am always eager for more knowledge, more experiences, more of the wonders the world has to show. Our world is infinite and ever growing. New books are being written right now, a song is being played for the first time at this moment, stars and people are being born and dying every minute. The whole of it can never be fully known. But, dammit!, I am determined to try

This is the type of language and sensibility that I have used while on my cancer "journey." I never caught on to using the metaphor of war in regards to this disease. Though it is very popular to refer to a patient's "battle" with the dark forces of cancer. I don't know that I very much like the war language. For me, I am not fighting against anything. I am Living despite the obstacles or difficulties or pain or frustrations. I am Living to spite cancer. To show that it cannot keep me down or caged. One of the many articles about Bowie's death last week said something about his courageous battle with cancer. But I think that is the wrong way to talk about it, and especially to talk about his death. He released an album days before he died, and worked to create new things all the while he was ill and going through treatment. This is not fighting... that's straight up hardcore Living. He pursued his passion until the very end.

If this is a battle that I am in, then there is no winning. So why waste precious time and energy fighting when I could be doing so much Living instead. Why fall into the negativity and fear of being at war? Cancer is not my enemy; it is not even my opponent. It is a thing that I have to live with, a constant companion. If I cast it as an enemy, then I have to sleep with that enemy every night. How hard does that make it feel? Why make life any harder? It doesn't have to be that hard. I choose positivity. To stay on the sunny side of the street with my chin upturned and my thoughts lifted. I will pursue passion and not waste my time in the dirty trenches of war.

There was a great podcast that spoke to the language of cancer and the ways in which we talk about it. It is what initially had me thinking about all this. For those that are interested, here's the link to it: The Cancer Show, part 1.

Want to hear my favorite Pink Floyd song? Watch it Here.

And to finish, a beautiful piece of art: The Lament of Icarus: