Thursday, October 29, 2015

Dropping a Quick Beat

I have absolutely decided that Oxaliplatin is the satan of chemo drugs. At least in my world. Removing it from the cocktail has made differences galore. This was the most tolerant chemotherapy session that I have ever had. Not only did the day of go pretty well but the two days of 5FU pump to follow were also relatively good. No nausea this round, so I'm absolutely calling it a win for my corner. Got my pump off yesterday afternoon and am definitely feeling the positive difference of that today. My energy and focus are almost my own again and I've even made dents in my to-do list.

Admittedly, I am not getting enough rest yet. They put me on steroids a month ago to keep the brain edema (swelling) in check both pre- and post-radiation. I am having all sorts of side effects from the steroid, one of which is keeping me awake and restless. Though the last two days have found me in 1 1/2 to 2 hour naps at least once a day, which helps make up for the six or so hours I get at night. Luckily yesterday was another step down in the steroids. So down to twice a day and I got about ten hours of almost solid sleep last night. Total win and probably also a major factor in my energy and focus earlier today.

Speaking of earlier today... that's when I started this blog post. All sorts of thoughts and such to share. But got side-tracked with lots of other to-do's and calls and what-nots. We all know how the days just get away from us sometimes. Now I can feel the call of an epic nap (woot!) and wanted to drop this post before I let it slip into the ether of the day. Maybe I'll get back to all those thoughts and such to share in the next day or so. I see people are still checking in on me here, which encourages me to try to be a good blogger with entertainment and witticisms to come.

Oh yeah...

and I got a haircut this week to bulk up the layers as my hair starts to thin again. And who doesn't like a great haircut to make you feel wonderful. Plus, my stylist is a great person -- warm, understanding, talented and a joy to spend time with. She set me right up and even sent me home telling me how I made her day. Not sure how I got so lucky to be surrounded with so many good people in my world, but I'm conscious and grateful for it daily.

Monday, October 26, 2015

Reliving the Live Experience

10:25 AM
Ayup! Here we are ladies and gentlemen.

Monday... MONday... MONDAY!!!

In this week's Round One here are our contenders:

The ever stalwart, fashionable, FU Cancer,
fighting fear with Hope, Warrior Woman,

In Corner Two is the sterile, clinical,
straight man bringing the big guns,
Infuuuuu-sion Puuuuuumppp!!!

10:45 AM
I am all hooked up and they've begun some basic fluids and the anti-nausea drugs. This first one is Aloxi, a member of the Zofran family. It is a slow-release version which will stick in my system for 2-3 days to help combat nausea. I've also elected to go ahead and let them keep the Ativan in the mix this morning. This anti-anxiety drug also has good anti-nausea properties and I will take all the help I can get in that area. First session chemo can be a shock on the system and I learned from the first time around to take all the extra help they are willing to offer. My focus may be a bit fuzzy for it, and it is definitely the "napping" drug. But who doesn't like a proper nap?!

I've enjoyed a tasty muffin and breakfast with my wonderful coffee all from Water Street this morning. Barely holding off on the last of the muffin (pear ginger and SO good), so that in a couple of hours I'll still have a sweet treat when I really want that little something-something. Might be asking for a fresh warm blanket (one of the best perks!) and kick back a little bit now.

11:10 AM
Let the full-scale poisoning officially begin. Avastin in the bag for an hour and a half. New warm blankie for my lap, and sometimes swiss miss hot cocoa from the volunteer cart just really hits the spot.

12:40 PM
They have massage therapists that come around and offer hand and foot massages to infusion patients. Just got a wonderful hand massage and some lovely conversation. Total props for the care and extra attention. The little things make big differences.

And also time for the newest round of drugs. Avastin is all finished up and now they are loading me with Atropine to prevent the apparent new possibility of explosive diarrhea with the Irinotecan. A rare thing, but a thing that can happen during infusion apparently. Talk about potential adventures and great campfire stories! 

Leucovorin and Irinotecan will run together for the next two hours. So this is the last downhill slide to being done for the day. We got settled in and my port accessed about an hour behind the original schedule, but they always over schedule for an hour or more just for that sort of thing. So I'm kind of right on schedule to be done and out of here around 3 PM.

2:15 PM
Just another twenty minutes left on this long infusion set. Oddly enough, this is the first chemo session ever without a nap. I felt the Ativan kick in and decided that I was going to try to focus on some online work and the blog and apparently swerved right around the sweet spot of nappiness. Fuzzy, slow, distracted inter-webbing happened instead of anything accomplishing. But, I think I can forgive myself for that today.

Feeling pretty alright and kinda mostly physically normal through this infusion session. Hopefully that means that I'll tolerate the Irinotecan without any real issues and all the anti-nausea drugs will keep me on an even keel tonight. And if all I do is sleep away the rest of the afternoon and evening upon home arrival, that's a perfectly acceptable end to the day.

3:20 PM
All hooked up to my pump and ready to head home. The bolus of 5-FU has me feeling a bit fuzzy again. I forgot how much it tires me out. Which means I can get to the epic napping upon arrival home. Yay! Back to figuring out how to work around this fashion accessory pump for the next couple of days. I'll try to be accomplish-y and post-y tomorrow. Have a hair appointment after all, so there will be pictures to post.

I'm going to call Round One firmly on the side for Victoria today. Toleration seems to be really good so far. The night will prove out as it does. Thank you for checking in on me and all the love and good wishes that have been sent out. It makes the biggest difference - Truly!

Monday, October 19, 2015

Back into the Rabbit Hole

Welcome to Monday in blog world. You have all been waiting with quite patient hearts for me to get my ass back at the keyboard. To that end, I have sat my ass down at Right Brain Brewery in beautifully fall-festooned Traverse City, MI this afternoon. Old fashioned oldies playing on the speakers, just a few quiet patrons, a rainbow sampler laid out before me, fresh guacamole and chips for munching, and a few hours on my hands. (By the way, cucumber basil saison - it's a legit tasty beer!) Afterwards I shall go pick my sister up from her local office and we will visit the downtown food truck row for vittles to take on our mini evening color tour. That's all the good stuff... moving on...

Met with my medical oncologist this past Thursday to go over the lung biopsy results. Which they screwed up and pulled tissue from the atelectasis instead of actually getting into the tumor. Overtly conservative surgeon, which isn't quite a bad thing as getting into the hilum area is a difficulty and full of pitfalls near all those anterior arteries of the heart. However, this (my doc and the tumor board that discussed my case last week) confirmed my thought that the biopsy really wasn't necessarily needed in the first place.  *sigh*  Clearly this is a metastasis from the rectal cancer and it has thrown cells further into my system. Considering the statement about heart arteries above, surgery is an even more complicated and worrisome choice. They won't necessarily be able to get full, clean margins without removing more lung than I can afford to lose and the surgery would weaken my system. Not the best choice before starting chemotherapy rounds again. Plus, it's already thrown into my system and the brain... so although we want to remain as aggressive as possible, we don't want to make decisions that lead down more difficult paths without the proper rewards.

This makes the next treatment step chemotherapy. The brain mets have been addressed and we will know how that worked out in six weeks-ish when I get the results from my follow-up MRI. Now we address the lung tumor by poisoning the crap out of it for a three-month course of the FOLFIRI chemotherapy cocktail. This is almost the same cocktail mix I got the first two rounds a couple of years ago. Though, bonus!, it replaces Oxaliplatin with Irinotecan hydrochloride. Those who followed this the first time around may remember that the oxaliplatin has the side effect of neuropathy, which is an extreme cold sensitivity. This was something I was very affected by and definitely decreased my quality of life while on chemo, especially in the cold winter months. Not having that drug in the cocktail kind of has me excited, weird as that may sound from the outside. The neuropathy last time meant that everything I ate or drank had to be 80 degrees or better for the first several days post-treatment. The lack of limitation on my diet is fantastic. And as the first frosts have already hit around here, it will be nice to not have even more problems trying to keep warm and feel like my skin wants to tingle off my body constantly.

Side effects I can expect will be nausea (duh), diarrhea, and of course the immunosuppressive effects of full scale poison in your system. Last time I had no other of the secondary effects, though my hair did thin a bit and I suspect any fullness I have left will continue to dissipate. Thank goodness my hairdresser's new layered cut makes up for all that. I see a fresh cut in my next couple of weeks. 'Cause as you all know I will continue to dress my best for chemo sessions and do no less than continue to be fabulous through all this to come. Newcomers might wish to visit The Cancer Fashion Guidebook post.

The chemo will be every other week, ideally beginning next Monday. Four hour infusion in the middle of six-ish hours at the cancer center. I will go home with an infusion pump still connected for 48 hours and will have to return to have that disconnected on Wednesday. The infusion pump is about the size and weight of an early eighties Sony Walkman tape player in a over the shoulder bag - super great fashion accessory. Does make showers challenging, but otherwise just a low level frustration. And of course, two more days of constant chemo. You know my love of silver linings... and the first half of chemo week is full of ALL the sleeps! I turn into a cat with the 12+ hours of sleeping for three and four days. By the first weekend my energy may be low but my sass is back in high gear. And off-week is practically normal with the possibility of continued cat-like napping tendencies.

After the first three-month course there will be a brand new PET scan to see how well the chemo is blasting the tumor. I'll have to check my medical journal, but I'm pretty sure that will be big number 10 PET! We should start the betting pool for superpowers soon. It will be re-evaluation at that point and likely another three-month chemo course to follow. The key here is keeping the lung tumor in check so that it doesn't throw anything more into my system. In that ideal world, we keep on systematic chemo with the possibility of using radiation in between courses to give me some extended off-chemo time (say 6-8 weeks) in which I can get some proper recovery and do some more awesome world traveling.

That's a whole lot of details and medical know-how I've tossed at y'alls feet. Google the hell out of what you want to know more about. Or toss me an email or FB message or text if you want more dirt. I've been showing my ass around this place for a few years now (HA!!!) and that's not bound to stop.

In case I hadn't made it quite clear... My spirits are high and I'm determined to kick this shit in the dirt as best as I possibly can. At least weekly updates will happen from here on out. There will likely be the re-establishment of the Live Chemo Blogging (super exciting napping fun times!). And there will certainly be philosophical, pretending I am deep and full of life advice shite to come. So stay tuned to this Bat Channel and POW! BAM!, Holy Tuxedo Batman, you will be full of the Know!!!

Tuesday, October 13, 2015

I'm no good for zombies now...

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

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

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

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

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

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

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

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

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

Wednesday, October 7, 2015

Next Steps

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

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

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

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

Sunday, October 4, 2015

The Give and Take (March 20, 2015)

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

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

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

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

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

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

An Oddity and an Update

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

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

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

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

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

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