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.

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!

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*