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.

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*

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!

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.

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.

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.

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.

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.