Tuesday, December 29, 2015

The Fourth Assiversary

Yesterday marked the fourth year since my initial diagnosis. It was also a chemo day for me. The start of the second half of this first new round. I'll be finished with this round by the end of January and should have some sense of where things stand by mid-February after my next PET scan.

This year has been quite the whirlwind. Like most years it was full of ups and downs, amazing and difficult times; though each hit the extreme ends of the spectrum over these past twelve months. The past three months have been hardly anything but chaos -- full of fear, family, radiation, friends, scans, adventures, chemo, love, and heartbreak. I'd spent the spring and summer in a space of redefinition and centering. They were warm carefree days and cancer was the last thing on my mind, if it crossed it at all, during the long warm months in the center of this year. Languid and lounging were my words to live by. Smiles and laughter were the currency I spent with abandon on all those around me.

The re-diagnosis hit me very hard. Partially because I had just had some of the best months of my life. Partially because I was visioning so many things for my future. Partially because I really thought that I had a chance to beat the odds. I was in equal measure very positive and very scared at that last PET scan. It felt like two years of N.E.D. (no evidence of disease) was just the beginning, but could also be a turning point. Though honestly, there was never a PET scan where I was not filled with some anxiety. It takes many more years than two to crawl out from underneath the shadow of cancer once it has taken place within you.

This year has changed me, multiple times, and there are shifts still to come. I've re-identified myself over and over. And all I am really looking for is to just be Victoria; if I can get my feet on solid enough ground and un-cloud my eyes enough to see Her. And if I can feel that those around me can truly accept me for exactly who She is.

Adaptability has always been a strength of mine. And I have tapped that ability again and again in the latter part of this year. I've had my feet knocked out from underneath me what feels like countless times since the fall began. There have been a lot of days where it has been hard to be the all chipper, all positive gal. I am relearning the lesson of having patience and allowing space for myself. It is so easy for me to give that to others, to give my kindness away. Saving some for me has proven challenging. But the days pass and I get a little better at it each one.

Despite all the challenges and difficulties, I am still determined "to live deep and suck out all the marrow of life." My blogging has been lacking this month because I lived the hell out of December. I had friends visiting me for the first week and a half of the month. Spent the next several days sharing meals and conversations and laughs with lots of my local peeps. I then ran off to New York City for the very first time. What an adventure and grand time it was! I returned with barely enough time to travel to my sister's for a long, laid back and loving Christmas weekend. And now here I am post-chemo and feeling pretty fine all things considered.

For those who look for it, you noticed the lacking in live blogging this chemo session yesterday. I had a wonderful friend with me for my infusion and we were busy looking through NYC pictures and catching up. Perhaps there will be future editions of the live blogging, plenty more sessions to come in future months.

These days before the actual New Year have become the turning of my personal year's wheel. This "assiversary" is my space for reflection and deep consideration of time passed and the time to come. As the new year does come around, I do so hope that your reflections settle on the smiles shared in the past year, in the shine of eyes that love you, on the hugs and touches of friends and family, and on whatever beauty struck you in the world. And I wish you all these things in the year to come.

Saturday, December 5, 2015

Are you Pondering what I'm Pondering?

A bit behind in posting the update from my latest MRI brain scan. The takeaway is all good news. No new brain metastases, shrinkage on three of the four tumors that were radiated, and the fourth one is not showing up on the scan at all. My radiation oncologist says that the tumors will continue to shrink over the next couple of months from the initial radiation. And there will be follow-up MRIs every three months to see where things are.

What else, what else?

Had a wonderful friend come in and stay with me for the beginning of this week while I was on pump and recovering from Monday's chemo session. Lots of fantastic conversations and she was perfectly content to let me nap for hours and hours. So, yeah... the napping is finally back in action. Which is kind of nice, but it does mean that I'm a bit more wiped out with each session that comes along. We all knew that was going to happen though from past history. Continuing to have zero nausea issues with this round of chemo, which is fantastic. My appetite is finally starting to wane a bit. But I do make sure to eat and there is that buffer of self-indulgence from the last couple of months. Otherwise, beyond the tiredness, still seem to be tolerating this round pretty well.

More company and time with friends the rest of this week and weekend as well. It's been rather a lovely week overall. I finally booked my flight to NYC today! So I'll be hitting the Big City for the first time ever right when it is dressed up in all its holiday glory. I'll be visiting with several friends while I'm out there and road-tripping home with one of my best girls. I suspect it will be a pretty brilliant trip. Again and again I am reminded the ways in which I am blessed by my friends and family and the opportunities that have presented themselves. My job, and joy, is to embrace all.

Monday, November 30, 2015

Another Live Chemo Broadcast

11:15 AM
Finally... a chemo morning where I was prepared, on time and shit didn't hit the fan or go wrong. The last three times I've been in for treatment (or to try for treatment), there's been any number of things that have been problematic. First time my alarm was set incorrectly but luckily I was so overtly prepared that we weren't running more than five minutes late. Same morning the coffee shop stopped carrying my favorite breakfast item, and I spilled half my coffee. Second return for chemo I not only spilled half my lunch into the garbage bag and all over the floor of the doctor's office, but my counts were too low to get treatment. The third trip to get the second treatment I completely forgot my numbing cream and was just not as prepared.

This morning I was prepared, up on time, got the breakfast and coffee I wanted, was on time for appointments, numbed up everything so I haven't felt a single needle poke, and I have lovely company for the entire session. Thank goodness for a successful chemo morning. Now I'm a bit doubly anxious about my afternoon appointment with my radiation oncologist and the results from my latest brain MRI. I just can't imagine the day is going to go swimmingly from start to finish.

So as for the chemo this morning. I'm all hooked up and through the first couple of pre-chemo counter-active drugs.

1:45 PM
My second friend, and companion for the next couple of days showed up a bit ago. And after a jaunty bit of conversation amoung the three of us, we were informed of the policy of only one visitor per patient in the infusion room. Harumph! So I've bid adieu to my morning companion and now preparing to finish out the treatment session here.

2:30 PM
All finished up with the chemo treatment. My lovely 5FU pump is back on boon companion status for the next 48 hours. Now to research take-out options for dinner and get downstairs to meet with my radiation oncologist for the results from my brain MRI. I'll update either here, or a separate post, this evening to share the results from that meeting.

So I'm calling it out for this "live" blogging edition this round. Hope you're all having fantabulous days out there.

Monday, November 23, 2015

A Plain and Simple Update

Quite a crazy and busy week it has been. I was up in the far too early hours this morning to have the follow-up MRI scan on my brain. Next Monday late afternoon I will get the results from this and then we will know if the radiation treatment did its job (fingers crossed), and whether there is anything else up there we need to be worried about (knock on wood). I will blog with the info about that either Monday evening or Tuesday. That is also chemo day, so we will see how awake and coherent I am to actually consider writing Monday evening.

I was reminded early last week why it is important to "lean in" on my support network. It has always been a little hard for me to take too much from people. I have often worried about anyone feeling taken advantage of. But I have to recognize that offers are made with open hearts and do as much for the giver as for me. I do know this from the giving side; I have felt that satisfaction from helping and making a difference. And it has been a good week for the leaning in. As a matter of fact, for my chemo next Monday I not only have a ride but also company for infusion. And then another girlfriend is picking me up and staying with me for a couple of days. I'm going to start feeling pretty spoiled pretty quickly.

Thanksgiving is just a few days away and I'm looking forward to some extended time with my family. I know my sister and I have gotten pretty spoiled with seeing one another every couple of weeks. And it already feels like an age since she was here less than two weeks ago. We will go in to full-on Christmas decorating mode on Friday and Saturday. And then I will come home and do the same again with the Roomie.

A nice quiet day today. The cold I thought I was picking up seems to be clearing with the steroid inhaler that I haven't used for a few weeks. Who knew that medications can actually help the way they're supposed to do? (tongue firmly in cheek) Sunday was a rough day, mostly slept it away. Which was an important way to spend it. The cold mentioned above and a couple of long late days and nights with friends caught up with me. Today I am definitely feeling better on a number of fronts.

I have several notes with ideas and thoughts for blog posts that I hope to get around to sharing soon. Apparently the philosophical me has begun to emerge. This is good, as perhaps it means I'm finding my voice again. I will take that as progress. Something more to be thankful for in this week of giving thanks.

Monday, November 16, 2015

Let's call it Hunky-Dory

Hello interweb world! Looks like there are a few of you out there checking in to check on me. For the intrepid, here is an update. *grin*

I still seem to be tolerating the new chemotherapy cocktail pretty well. No nausea issues again, though some milder stomach cramps this time around in the couple of days following treatment. I did find myself a lot more tired the day of treatment and while still on pump this time around. Which is expected and a good thing because it means catching up on sleep. So there were some great naps and finally some solid full nights of sleep, all the way up to eight and nine hours even. Just one more step down away from being completely off the steroids, and I think that halving the dose this past week has made a huge difference in my ability for sleep.

They gave me an on-body-injector (obi) for my Neulasta shot on Friday when I got off pump. They want to wait 25-27 hours post-chemo to give you the shot. And as that would be on Saturday and the cancer center is closed, the option was to wait until Monday/today to go in for a shot, or get the obi. A smallish plastic device (---> pic) that they stuck to my abdomen, then after three minutes inserted a tiny cannula into my belly, and then 27 hours later started a 45-minute infusion of the Neulasta. Didn't notice a thing and something I will likely do again versus going to the center a third day during treatment week. After the injection is done, you just remove the whole thing and dispose of properly. They ordered me a sharps box just for these. I have quite the growing inventory of medical shite around the house these days.

One fantastic reason I didn't notice anything about the Neulasta injection was because at the time I was enjoying a performance of Beethoven's 9th Symphony with the Battle Creek Symphony and a variety of local choruses. One chorus includes a friend of mine who had kindly invited me to be his wife's date for the concert while he was up there making musical magic. We had a lovely dinner at Arcadia beforehand, got to all the catching up, and enjoyed a great performance. Plus!, I received a beautiful gift of a warm and purple knit collar. Happened to perfectly match my ensemble for the night and I am quite looking forward to it keeping me cozy through the winter months to come.

It will be two weeks from today before my next chemotherapy session. We have to wait ten days after the Neulasta shot, and that puts us right on top of Thanksgiving. Although this extends my treatment schedule, it does mean that I will have a solid two weeks of feeling straight up normal. And I'll have plenty of energy for the holiday with my family and all the decorating at both my sister's house and here with the Roomie.

Oddly warmish weather and some beautifully sunny days around here lately. I will be rather pleased if it ends up being a mild winter this year. I took full advantage of the weekend and spent a lot of time with several friends. I don't know if I've mentioned lately how completely awesome my People and my network are -- but they are pretty freaking great! A weekend with dinner and a movie, dinner and a concert, dinner and decorating, a shared walk in the woods, quality conversations, so much catching up, and I made it to the farmers market to boot. Taking advantage of every good day and every opportunity, this is my aim, my quest.

Wednesday, November 11, 2015

Check, check... mic check

10:30 am
Three cheers for the Neupogen work-around. My WBC counts are super high, and the neutrophils are extraordinarily abundant. Which means we are a total go for chemotherapy treatment today. I've been hooked up for about an hour and a half now and the long two hour infusion has already begun. Today is going to be a short day as a matter of fact. Apparently since just two and half weeks ago, some new news has come on the scene about Avastin. That has been an hour and a half infusion on its own in these courses. But new guidelines say that it can be done in a 10-15 minute infusion and might even work better for the change. So that shaves quite a bit of time off my sitting around the cancer center.

The pre-chemo system settling drugs all went in quickly and without any hitches. A little foggy headed for the Ativan, but otherwise feeling okay.

11:00 am
Playing with the webcam.  



12:00 pm
The infusions are finished and we're about to get my 5FU bolus and then hook that wonderful pump accessory up to me for the next two days. My ride is prepped to be here exactly when I'm all packed up and ready to fly home. And then we will see if the napping can happen this afternoon. I think I'm going to appreciate the shortened infusion days. A couple more hours at home versus hanging out at the center is certainly a better shift.

12:30 pm
Packing up and heading out. I'll get back to another post when I get around to it. Hope you all have lovely afternoons and evenings out there.

Monday, November 9, 2015

Roll With the Changes

So the live blogging is on delay.

I hope everyone is excited to learn things today, because I'm going to be science-y and explain-y. For me as well as for all of you. Today's lesson will brought to you by the letter "S." I have chosen this one because "Science," but also mostly because of "Shite." Because -- Yay! no chemo treatment today, but also -- Shite! no chemo.

First thing on the agenda when you show up for chemo day is they take blood work to make sure your system is in good order and track changes from session to session. Apparently my white blood cell (WBC) count is practically nil today. The ideal range is 4.5 - 11.0 and mine is 1.7. Not only that, but my Neutrophil count is 0.2 when the range should be 1.8 - 7.7. Neutrophils are the most abundant and mature of the white blood cells and the first immune cells that move to infectious sites -- first line of defense. Not so abundant in my system today however.

This means that I am severely immunocompromised and likely at least moderately neutropenic. Remembering that chemotherapy is a full-scale system poisoning... it's not something they will do when your system is compromised past a certain point. The kind of fraked up thing about chemotherapy is that they are attempting to kill the cancer in your system without actually crossing the line into killing you and the rest of your bodily systems. It's a difficult balance to maintain sometimes.

This changes the whole way we approach my chemo treatment this course. (Quick reminder since I'm being super explain-y today: a course is 6 infusion treatments done every other week, takes about three-ish months.) During my first two chemo courses back in 2012/13, I had low WBC counts and neutropenic issues right before session number 5 each course. The first course they delayed that fifth treatment by a week. I had it in my mind that this course would be similar to the first two and we wouldn't run into the WBC count issue until session number 4 or 5 again. But here I am having to roll with the changes that keep coming with this recurrence.

The silver lining is that no one was awfully surprised with the news. It is not an uncommon thing when cancer patients have had prior chemotherapy that their system has a hard time keeping white blood cells up with a new chemo course. Apparently my body just isn't bouncing back and my bone marrow isn't producing quickly enough. Luckily there is a work-around. And I always love me a work-around. There is a drug, Neupogen, a protein form that is a colony stimulating factor which will encourage/force my body to create immune cells. They gave me a shot of it today, and I'll go back for a second shot tomorrow. Then, on Wednesday morning we will do a new set of blood work and see if my system has a decent set of WBC. If it does, then we go ahead and do chemo treatment number 2 Wednesday morning (fingers crossed everyone!).

Since we are having the WBC count problem so quickly this time, they will treat me with Neulasta (a longer lasting version of Neupogen) the day after each chemotherapy session. It should help my system bounce back each time so that we don't have any more delayed sessions. They may also decide to lessen the dosages of some of the chemo drugs in future sessions. Roll, roll, roll with things.

That's a lot to absorb, and maybe more details than needed. I've never been afraid of a bit of verbosity. And I'm certainly the type of person for whom details and knowledge bring empowerment. So for those of my friends who are the same (and I know you're out there!), this is all right up your alley. If all goes well this week then there could be super-not-exciting live chemo blogging happening on Wednesday. And if not, then there will at least be another update here. 

It's been a dual dueling working laptop afternoon on couches with my sister all afternoon. We've both been working and chatting in the spaces between and soon off to get some take-out and a movie for a relaxing evening in pajamas. Not such a bad end to a compromised day.

Sunday, November 8, 2015

Head Games

How are you doing; how are you feeling? These are the constant questions from those around me. And I'm supposed to be keeping you all apprised of that here in this space. That whole regular updating thing still not quite a thing. Ah well.

So... the answers are, pretty well for the most part. Toleration of the first chemo round was really pretty good I'd say. Only one difficult night with tummy issues in the first week, and never any real nausea problems. Absolutely a good start for this course. "Off" week this past week has been great. My energy has been back to normal and other than some cumulative effects from continuing the steroids, not a lot of physical issues. Stepped down on the steroids again a few days ago, and will be off completely by the end of this month. Looking forward to that!

Keeping busy with friends and family of course. Attended an SCA event yesterday on the east side of Michigan and got some seriously great quality time with some seriously great quality people. Many, huge, and loving thanks to all of those who kept me company during the day. My love and energy battery is fully charged and I have so many great conversations to mull over while I sit in treatment tomorrow.

Yes -- round number two of chemo is tomorrow. The live blogging shall commence. Pretty much they all look and sound the same unless I get some exciting thing in my mind. Though I tend to be pretty brainless for most of those hours. Perhaps the point I am trying to make is to check in at your own mental peril (or complete boredom) tomorrow.

Since we have broached the subject of mental peril... and I've named this post Head Games (in anticipation)... and in the continued spirit of being an open book... and having little pride or shame left to worry about... I'll be completely honest here and say that it has been a harder mental game this time around. The recurrence is different with more factors in play and less options on the table. After two solid years of being clear and making life as I wanted it to be - including one of the best summers of my life this year - it has been a difficult transition back to patient mode.

The last six months have brought a lot of good changes into my life. By July I had fully found my Self and Center and was hearing my own inner voice above all others. Some daily meditation and time and self-kindness had placed me in an excellent mental and emotional space. The last six weeks have brought chaos and a lot of difficult changes into my life. However, I feel like I could not have been in a better place from which to come to these current weeks. Unfortunately those daily habits, including self-kindness, have not been such daily habits in the last few weeks. The past few days have found me finding the time for myself again and recognizing the imperative nature of this.

Being a cancer patient removes a lot of control from your life. Although I can be an active participant in my treatment decisions, and my own most-informed and best advocate for myself in these choices, there is a lot of just showing up and "doing the things." And there is just *SOOOOOO* much waiting! There is this nebulous space of unknowing that you have to learn to exist within. We did the brain radiation -- but won't know if/how it worked until we get a new MRI scan. That's still weeks away, and then there will be the week of waiting for the results after the scan. We are doing chemo -- but have to get through three months of it before we can know if/how it worked and we get a new PET scan. Then the waiting for those results for a week.

I can control what I consume and how I treat and move my body when it is up for exercise, but the rest of it is just riding the waves of whatever is happening on a given day. My schedule is only so much my own with the every other week chemo sessions. Any plans made need to be recognized as changeable. And so I awake each day with ideas for my day, but not necessarily the ability to follow through. I must be accepting of simply flowing like water around and through the days. A sense of control must give way to self-kindness and allowance. These are the subjects of countless platitudes and memes that swirl around the internet. Ideas that we all love the sensibility of, but rarely have the fortitude to put into action. And even in a situation such as mine, with optimism and hope as my sidearms, it is hard to stay on the sunny side of the street all the time.

This is another time of growth for me; that is what I have to come to understand. There will be growing pains and questions and it will be challenging. "It is what it is." This is a common phrase of mine since cancer first came into my life. I cannot change or control the situation. I can choose how I live within it. So it has been hard going lately in my mind and my heart. But I am stepping up out of the murky muck and choosing to keep my head turned again toward the dwindling fall sun.

Right now, this very moment however... the sun is shining upon me through the window. The squirrels and birds have been frolicking about the deck seeking acorns and any other edibles. The last sips of tea are waiting at the bottom of my favorite and most beautiful tea cup. There are simple chores to be completed about the house which will give me a lovely sense of satisfaction. And my sister will be here to keep me company through the next few days. There is much good in my world as long as I keep my eyes up and open to see. I wish the same for all of you as well. Who is to say that a little rose-tint in your glasses ever did too much wrong in the world?

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,
Vic--torrrrrr-iaaaaaaaaa!!!













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.

Tuesday, January 6, 2015

Hope Springs Eternal

It's the first Tuesday of the new year and I am certainly feeling fine. Those of you checking in here are probably waiting for the results from last week's PET scan. The results pretty much look like the results from the scan three months ago. And that is a very good thing.

The last three scans have shown increasing uptake in the right and left hilum lymph nodes in my lungs. As the metastases progression was in the lungs, this is concerning. Last June was when the activity in the right hilum was notably increased (doubled) into the four point range. The two point range being normal for a reactive lymph node. "Reactive" merely meaning a node that is reacting to some sort of inflammation, infection or otherwise. At that time I had a biopsy of the right hilum and nearby nodes, all of which showed benign. (Yay!) However, we did escalate my PET schedule to every three months to keep a close eye on things.

My October scan showed another doubling in the right hilum, as well as the left hilum moving into the three point range. This most recent scan shows the right hilum with a very small increase from 8.2 to 8.9. The left decreased to 2.9. Cancer doesn't usually sit still. So these results show us that these are probably just reactive nodes and, other than keeping close scrutiny on them, we shouldn't find them alarming. They're keeping me on the three month PET schedule for now. So there will be yet another opportunity to try for radioactive super powers in March.

I was rather anxious about the results this week. As much as I am a true optimist, I battle with the dark shadow of cancer recurrence across my mind and heart. And I was not feeling optimistic about my appointment yesterday. It has taken me a while to come to terms with the results. Which might sound odd considering the good news. But I was expecting bad news and have had to make a u-turn in my mind. Now I am beginning to allow myself to think that maybe cancer is actually behind me. For the first time since this all started I am feeling the shadow of cancer and death lighten. Would it be too much to hope that we actually cured it? I've talked about the "long tail" and the 2% as being loads of people, and that I could be one of those people. But I never really believed it deep down. I think maybe I could believe it now. It feels like a very large step forward.