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*

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.

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!

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

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.