Five years ago today I went alone to an appointment that would change the rest of my life. I was going in to get the results from my recent colonoscopy and had no real worries on my mind. Not long into the appointment my mind was racing and I hardly remember the details of it. Just the devastating part: you have a large cancerous tumor and we need to run more tests to see if it has spread.
I had never really been in the world of cancer before. My aunt had breast cancer which was easily cured with surgery and no chemotherapy. My grandfather had died a couple years before from multiple myeloma, but at an advanced age. I had one distant friend who had just gone through breast cancer and chemo and the like. But I had not been involved with their care; had not been close enough to experience the cancer journey with them. But there I was, thrown into that world and scared out of my mind. The next month was a complete rollercoaster of emotions, scans and tests, all while I continued to work full time and juggle the people in my world. By the second week of February we had a complete diagnosis and a plan of action.
It has been some crazy, whirlwind and busy years since that time. And for all the chaos and difficulty of 2016, it still rates as one of the best years of my life. I can top this great year off with the knowledge that as of today I have beat the five-year survival odds. And I am still doing my very best to fully live and be grateful for each and every day that I continue to have.
I have been a bit quiet here on the blog. As usual, it's been some busy times in my life and I am greatly looking forward to some settling down to come in the new year. I will be starting another round of chemo on January 4. And that will certainly curb some of my constant movement. Just last Friday I got the results from my most recent round of all the scans (CAT, PET, MRI). My doctor says it was a good news visit. No new activity in the brain, and continued stabilization of the remaining tumor. Low activity in the primary metastatic lung tumor. My bloodwork looked good. Though there is a new lesion in the upper left lung that has been causing pain and may end up getting radiation treatment.
As much as this was considered a good news visit, it was of course a little hard for me to settle with. I keep my hopes so high that I keep thinking someday I'll come to one of these scan results and the cancer will just magically have disappeared. And though I am inclined to keep my hopes that high, there is some pragmatic thinking in my mind that wonders if I should tone that hope down a little so that I find myself less disappointed at times like this. The chemo is clearly still working for now, and I'll be having some genetic testing done on my tumor cells to see if there are any clinical trials or immunotherapy that might work for me. We are starting to work to find a plan B to follow up the current systematic chemo plan A.
My doctor called me an "exemplary patient" because of my knowledge of my cancer and all the treatments I've been through, as well as my continued positive attitude and willingness to live the hell out of life. But that is just me being me. Trying to live the best I can "with" cancer. Underneath it all I know that I will be dealing with this for the rest of my life. And the consolation I find is in positivity, mindfulness and complete engagement.
Big high fives and fist bumps to everyone for making another year marker. And for not letting this disease overwhelm me in the process.
Wednesday, December 28, 2016
Monday, November 21, 2016
Shadows in a Mirror
Negligent blogger back on duty...
And this is sort of a "live" blog as I'm currently sitting in the infusion center for number five of this round. Which means only one more to go for this year. Because yes, the year's end is nearly upon us.
I will get a nice break from the chemotherapy after the final session (in two more weeks) as my doctor has agreed to let me wait until after the holidays to start another round, if that is the route we take. Of course the plan going forward in the new year will depend on my next PET scan (mid-month Dec).
In the last many weeks since my last post, I have had another very successful MRI brain scan. It showed no evidence of the three smaller tumors, and the large one remains stable and continues to show less and less activity. This likely means it is slowly turning into scar tissue. And no new tumor activity! These are excellent results indeed.
The appointment to get those results had me thinking again about scanxiety. It is something I've gotten rather good at staving off in general. However there is something about the MRIs that still scares the heck out of me a bit. I don't think about it much in the week between scan and results anymore. But those few minutes from when the nurse leaves and the doctor comes in with the report, my nerves ramp up to 11. I feel it most after she has delivered the news and I feel the weight of the worry leave my shoulders. It was in that moment that I realized how much I had been metaphorically holding my breath and how very concerned I was about something other than positive results.
Living in the shadow of fear - this is a challenge for the late stage cancer patient who is living ~with~ cancer. At this current point of my treatment I am not expecting to get N.E.D. (no evidence of disease) or clean results from scans and doctor appointments. We, my team and I, are hoping for positive progression and to keep me as healthy as possible. As well as allowing me opportunities for the space and freedom to travel and live life as large as I can. And ideally to do this for many years. Eternal optimist that I am, I still hope for another span of time with Mr. N.E.D. That next affair is certain to be a whirlwind of a time.
I've spoken here before about the fear that sits deep in your mind, or on your heart, about recurrence and growth. Being touched by cancer leaves large and permanent scars; most of them not being of the physical kind. This goes not only for patients, but for caregivers and those truly closest to the patients. The work, the slog, the worry, the pain...it all takes a toll and leaves deep marks. In the quietest of times, when you are alone and the stream of your consciousness gets still, that's when you feel the chill of it pass by you. The smallest puff of wind that brings goosebumps and a deep melancholy. A moment that can linger or recede. This is where choice enters. Now and again it can be helpful, even cathartic, to remain in the sadness; allowing your whole heart to feel everything. To explore and allow all the deep emotions that we distract ourselves from daily. Clinging to the expansiveness of this release - that is the tricky place. After some time there I have to lean back towards the sun, towards the light of love and pleasures that are so prevalent in my world.
Perhaps that is where my "strength" comes from. That compliment that I more often than not eschew. I forget sometimes that my choice to stand "hopeful and smiling" does not come so easily to all. There are as many ways to approach our days are there are people on this planet. If I inspire or positively touch those around me, then I consider that a compliment that I am happy to receive.
And this is sort of a "live" blog as I'm currently sitting in the infusion center for number five of this round. Which means only one more to go for this year. Because yes, the year's end is nearly upon us.
I will get a nice break from the chemotherapy after the final session (in two more weeks) as my doctor has agreed to let me wait until after the holidays to start another round, if that is the route we take. Of course the plan going forward in the new year will depend on my next PET scan (mid-month Dec).
In the last many weeks since my last post, I have had another very successful MRI brain scan. It showed no evidence of the three smaller tumors, and the large one remains stable and continues to show less and less activity. This likely means it is slowly turning into scar tissue. And no new tumor activity! These are excellent results indeed.
The appointment to get those results had me thinking again about scanxiety. It is something I've gotten rather good at staving off in general. However there is something about the MRIs that still scares the heck out of me a bit. I don't think about it much in the week between scan and results anymore. But those few minutes from when the nurse leaves and the doctor comes in with the report, my nerves ramp up to 11. I feel it most after she has delivered the news and I feel the weight of the worry leave my shoulders. It was in that moment that I realized how much I had been metaphorically holding my breath and how very concerned I was about something other than positive results.
Living in the shadow of fear - this is a challenge for the late stage cancer patient who is living ~with~ cancer. At this current point of my treatment I am not expecting to get N.E.D. (no evidence of disease) or clean results from scans and doctor appointments. We, my team and I, are hoping for positive progression and to keep me as healthy as possible. As well as allowing me opportunities for the space and freedom to travel and live life as large as I can. And ideally to do this for many years. Eternal optimist that I am, I still hope for another span of time with Mr. N.E.D. That next affair is certain to be a whirlwind of a time.
I've spoken here before about the fear that sits deep in your mind, or on your heart, about recurrence and growth. Being touched by cancer leaves large and permanent scars; most of them not being of the physical kind. This goes not only for patients, but for caregivers and those truly closest to the patients. The work, the slog, the worry, the pain...it all takes a toll and leaves deep marks. In the quietest of times, when you are alone and the stream of your consciousness gets still, that's when you feel the chill of it pass by you. The smallest puff of wind that brings goosebumps and a deep melancholy. A moment that can linger or recede. This is where choice enters. Now and again it can be helpful, even cathartic, to remain in the sadness; allowing your whole heart to feel everything. To explore and allow all the deep emotions that we distract ourselves from daily. Clinging to the expansiveness of this release - that is the tricky place. After some time there I have to lean back towards the sun, towards the light of love and pleasures that are so prevalent in my world.
Perhaps that is where my "strength" comes from. That compliment that I more often than not eschew. I forget sometimes that my choice to stand "hopeful and smiling" does not come so easily to all. There are as many ways to approach our days are there are people on this planet. If I inspire or positively touch those around me, then I consider that a compliment that I am happy to receive.
Thursday, October 13, 2016
It's a very very mad world
I am past the halfway point through the second session of this fourth round of chemo. This week's pump has been named Percy (for both the poet and my old cat). Still mostly trying to embrace and accept the anchor that hangs off my shoulder for an exhausting 48 hour time span. This has been a more difficult week of it, but in about 12 hours it will be done. And I'll be able to quickly take my mind off of it when I meet a variety of friends for dinner and a Loreena McKennitt concert later this evening. My mind will continue to be sufficiently engaged and excited as I spend a long weekend with my sister, nephew and brother-in-law, and then follow up with a couple of days with my Paramour.
I'll come back down to cancer-earth next Wednesday for another brain MRI; continuing the every three months plan to keep a vigilant eye on my tumor-free brainy bits. Results of that won't be for another week of course, but I'll be certain to update when I have them.
Yesterday was yet another anniversary... they are coming fast and furious in this month of my re-diagnosis last year... the one-year anniversary of my brain radiation. That day stands in the top five of my scariest cancer days. I suppose you may be curious what constitutes that top five. As I began typing the statement about the top five I realized that I hadn't formally created that list yet. But it quickly coalesced into this:
1) The lung collapse and subsequent wide-awake chest tube insertion after my first biopsy. Still stands as the scariest moment of my entire life. There is nothing like feeling yourself being unable to breathe.
2) The initial diagnosis.
3) Going into my first major surgery ever for the primary tumor.
4) Learning I had brain tumors.
5) Brain radiation.
A difficult list to be certain. But, true to my positive perspective, it is easily balanced by an equally strong list of best things since cancer which includes new and stronger relationships, reclaiming and reveling in my life, and a few passport stamps.
These anniversaries do mean that Fall and early Winter have become weighty months for me. Which is a bit difficult as I always feel a slump when the cold weather approaches. (I suppose this means that Spring continues to have no contender for my favorite season. *smirk*) I was reminded of these anniversaries last week while I was traveling to California with a group of friends. At a quiet stretch of the drive, after the four of us had drifted in and out of conversations, I checked into FaceBook to pass a few moments time. As has become my habit, I checked the "On This Day" feature and it was a most interesting find.
In one year and just under two months from that post I would be diagnosed with stage IV cancer. I had no idea... You rarely do. The ponderings of that night would quickly pale and fade against all the new thoughts, worries, questions and planning. I am certain that my FB post that evening was predicated by something I had watched or read earlier. Something that had me thinking about all the things I had not yet moved forward on in my life; thinking about the morass of my days at that time.
It's a strange thing that I have confidently said multiple times that I am a better person for cancer. Yet, I can now answer the question above with a solid, resounding "yes." And I cannot assuredly say that without this experience I would have made the changes within myself that have led to me to these happiest days of my life. It is a strange, unpredictable journey we make through this Life. We have no idea how strong we are capable of being until faced with true adversity. It is also through those most difficult times when we see the true heart of the people around us. You find your staunch supporters. You see more clearly the world and our place within it. You rise or you lay down.
So I continue to rise... even on the days like this one where I rarely left my bed and never changed out of pajamas. If nothing else I took some time to write; to explore that side of my nature; to put myself again out into the world. I will ask it again now... have you started doing what you want in Life, have you reached your goals or explored your passions, have you done best by yourself and the others in your world? Whatever the answer, do more... you will rarely regret it.
I'll come back down to cancer-earth next Wednesday for another brain MRI; continuing the every three months plan to keep a vigilant eye on my tumor-free brainy bits. Results of that won't be for another week of course, but I'll be certain to update when I have them.
Yesterday was yet another anniversary... they are coming fast and furious in this month of my re-diagnosis last year... the one-year anniversary of my brain radiation. That day stands in the top five of my scariest cancer days. I suppose you may be curious what constitutes that top five. As I began typing the statement about the top five I realized that I hadn't formally created that list yet. But it quickly coalesced into this:
1) The lung collapse and subsequent wide-awake chest tube insertion after my first biopsy. Still stands as the scariest moment of my entire life. There is nothing like feeling yourself being unable to breathe.
2) The initial diagnosis.
3) Going into my first major surgery ever for the primary tumor.
4) Learning I had brain tumors.
5) Brain radiation.
A difficult list to be certain. But, true to my positive perspective, it is easily balanced by an equally strong list of best things since cancer which includes new and stronger relationships, reclaiming and reveling in my life, and a few passport stamps.
These anniversaries do mean that Fall and early Winter have become weighty months for me. Which is a bit difficult as I always feel a slump when the cold weather approaches. (I suppose this means that Spring continues to have no contender for my favorite season. *smirk*) I was reminded of these anniversaries last week while I was traveling to California with a group of friends. At a quiet stretch of the drive, after the four of us had drifted in and out of conversations, I checked into FaceBook to pass a few moments time. As has become my habit, I checked the "On This Day" feature and it was a most interesting find.
(Oct 1, 2010, after 10 PM)I cannot recall the exact memory of that evening. But I do know that I was in a transition period and moving towards two very difficult months. I was writing daily in my journal at that time, pondering and questioning my life and my choices. And also apparently asking the bigger questions. I know at the time of this post that evening that my answer would have been "no."
"So... have you even started any of the things you would do if you knew you had a limited time to live? Just asking hypothetically, BTW."
In one year and just under two months from that post I would be diagnosed with stage IV cancer. I had no idea... You rarely do. The ponderings of that night would quickly pale and fade against all the new thoughts, worries, questions and planning. I am certain that my FB post that evening was predicated by something I had watched or read earlier. Something that had me thinking about all the things I had not yet moved forward on in my life; thinking about the morass of my days at that time.
It's a strange thing that I have confidently said multiple times that I am a better person for cancer. Yet, I can now answer the question above with a solid, resounding "yes." And I cannot assuredly say that without this experience I would have made the changes within myself that have led to me to these happiest days of my life. It is a strange, unpredictable journey we make through this Life. We have no idea how strong we are capable of being until faced with true adversity. It is also through those most difficult times when we see the true heart of the people around us. You find your staunch supporters. You see more clearly the world and our place within it. You rise or you lay down.
So I continue to rise... even on the days like this one where I rarely left my bed and never changed out of pajamas. If nothing else I took some time to write; to explore that side of my nature; to put myself again out into the world. I will ask it again now... have you started doing what you want in Life, have you reached your goals or explored your passions, have you done best by yourself and the others in your world? Whatever the answer, do more... you will rarely regret it.
Thursday, September 29, 2016
Back on the sauce again...
I know, it's been awhile. The season has turned and the cool air begins to permeate into bones and homes.
Today is a new anniversary for me in this journey. One year ago yesterday (Wednesday) was my re-diagnosis. And on this day (Thursday) I will have learned about the brain tumors. It was the beginning of a very difficult fall season.
I am beginning this fall with the results and consequent effects of my latest PET scan. This is number 14 (a particularly favorite number of mine), and still no superpowers. But... we did get some good results. The left hilar tumor that seemed to be non-responsive to the last round of chemo seems to have completely disappeared due to the one-two punch of radiation-chemo through the summer. The primary metastatic tumor in my right hilum has gone down in uptake from 7 last scan to a 3.6 now. That's a beautiful 50% shrinkage. Though it is still too high for our liking and my oncologist recommended that we continue with another chemotherapy round starting yesterday. So now I am equipped with yet another pump full of 5-FU through tomorrow. But that does mean that one session of six is "in the bag."
I struggled with the results from this PET yesterday. I really had allowed my hope for a cleaner scan to elevate to pedestal-like proportions. And the fall from that was a bit painful on the figurative tailbone. I was sad for the first small while, and then I tried to get mad. But anger is not an emotion that comes easily to me; it instead becomes some emotional overwhelming that just seeps out of my eyes. So I sat in that space and was significantly annoyed instead. Once the routine of chemo started I began to right myself. Chatting with my neighbor one chair over also helped to remind me of the reasons we slog and fight through this cancer crap. By the end of our conversation, and a wonderful greek salad delivery, I was nearly back to my chipper self.
I did have some nausea issues with this session. Woke up today feeling better, though still a little worn out. I expect the upturn will continue once I get the pump off tomorrow afternoon. This means we are back on the every two weeks schedule, and my next two are already scheduled (Oct 11 & 25). Which means... ! dun dunh da dun !... that I'll be blogging in a somewhat more regular way.
Since my last post I've done lots of course. Biggest of all being going to freaking Paris! And I leave this Friday for Southern California for a week. An update about Paris and the space between will have to come another day. Perhaps I will even do a bit of writing these next few days or in the week to come while I bathe in the warm California sun.
Today is a new anniversary for me in this journey. One year ago yesterday (Wednesday) was my re-diagnosis. And on this day (Thursday) I will have learned about the brain tumors. It was the beginning of a very difficult fall season.
I am beginning this fall with the results and consequent effects of my latest PET scan. This is number 14 (a particularly favorite number of mine), and still no superpowers. But... we did get some good results. The left hilar tumor that seemed to be non-responsive to the last round of chemo seems to have completely disappeared due to the one-two punch of radiation-chemo through the summer. The primary metastatic tumor in my right hilum has gone down in uptake from 7 last scan to a 3.6 now. That's a beautiful 50% shrinkage. Though it is still too high for our liking and my oncologist recommended that we continue with another chemotherapy round starting yesterday. So now I am equipped with yet another pump full of 5-FU through tomorrow. But that does mean that one session of six is "in the bag."
I struggled with the results from this PET yesterday. I really had allowed my hope for a cleaner scan to elevate to pedestal-like proportions. And the fall from that was a bit painful on the figurative tailbone. I was sad for the first small while, and then I tried to get mad. But anger is not an emotion that comes easily to me; it instead becomes some emotional overwhelming that just seeps out of my eyes. So I sat in that space and was significantly annoyed instead. Once the routine of chemo started I began to right myself. Chatting with my neighbor one chair over also helped to remind me of the reasons we slog and fight through this cancer crap. By the end of our conversation, and a wonderful greek salad delivery, I was nearly back to my chipper self.
I did have some nausea issues with this session. Woke up today feeling better, though still a little worn out. I expect the upturn will continue once I get the pump off tomorrow afternoon. This means we are back on the every two weeks schedule, and my next two are already scheduled (Oct 11 & 25). Which means... ! dun dunh da dun !... that I'll be blogging in a somewhat more regular way.
Since my last post I've done lots of course. Biggest of all being going to freaking Paris! And I leave this Friday for Southern California for a week. An update about Paris and the space between will have to come another day. Perhaps I will even do a bit of writing these next few days or in the week to come while I bathe in the warm California sun.
Thursday, August 18, 2016
War *unh* what is it good for?
Hello and cordial greetings! I have joyously returned from my campaign traveling to the War in Pennsylvania. Such a glorious time was had. I had a spacious dining fly "porch" that quickly became dubbed the "champagne lounge." Ironic, considering we had no champagne. But there *was* lots of sangria. Or, as one new visitor called it, shangri-la. And so the evenings passed fairly wine-soaked, and the days passed slowly and melting-ly in the heat of the sun. I had two goals for this year's War, and I can say with confidence that I successfully attained them both. The first was to take time for friends and campmates - tending requests for visits; making a hospitable space for all; spending quality time with those I truly care for. The second was to find a place of temperance. This is somewhat related to the first. To balance my time, my attentions, my wine consumption, my resting, Me. And so it was... though, it was the laziest Pennsic ever for me. There was tons of lounging with music and books and conversations. It was a true vacation this year.
Upon my return, I jumped directly into the last session of this third chemo round. Had more nausea than usual this time around. And I slept most of Tuesday into oblivion. I'm certain some of that was resting from my vacation. But even through today I've been wiped out. Since the pump has been off this afternoon, I have felt a bit peppier, though not near a hundred percent. I expect the morning tomorrow will find me feeling much better.
Next on the cancer front is a PET scan in the middle of September. Results the third week of the month, and, depending on the report, possibly starting a fourth round of chemo instantly. However, I am hoping that the report, post radiation and this last round, will be clear enough for a break in treatment.
Nothing else has happened in the last couple of weeks. Vacation and all the fun that it brought. Now I start to prep for my trip to Paris in just over two short weeks. Yay!! Super excited to go to one of the most iconic cities in the world; a place full of wonderful art, amazing food, fantastic wine, stylish population, and loads of history. It is only a 6 day trip, but I expect it to be fantabulous.
Don't believe I have any pithy, optimistic bits for you this evening. So... I hope you are all well or working your way towards better. *mwah*
Upon my return, I jumped directly into the last session of this third chemo round. Had more nausea than usual this time around. And I slept most of Tuesday into oblivion. I'm certain some of that was resting from my vacation. But even through today I've been wiped out. Since the pump has been off this afternoon, I have felt a bit peppier, though not near a hundred percent. I expect the morning tomorrow will find me feeling much better.
Next on the cancer front is a PET scan in the middle of September. Results the third week of the month, and, depending on the report, possibly starting a fourth round of chemo instantly. However, I am hoping that the report, post radiation and this last round, will be clear enough for a break in treatment.
Nothing else has happened in the last couple of weeks. Vacation and all the fun that it brought. Now I start to prep for my trip to Paris in just over two short weeks. Yay!! Super excited to go to one of the most iconic cities in the world; a place full of wonderful art, amazing food, fantastic wine, stylish population, and loads of history. It is only a 6 day trip, but I expect it to be fantabulous.
Don't believe I have any pithy, optimistic bits for you this evening. So... I hope you are all well or working your way towards better. *mwah*
Wednesday, July 27, 2016
I got some wild, wild life
Good evening people of the internet. A few bits of news to catch you all up on, and ongoing adventures to follow.
I had another brain MRI last week and received the results on Friday. All good news. First off - no new tumors! Woot!! Secondly, the large tumor on my occipital lobe has stabilized and there is still no evidence of the other three small tumors. So it looks like the radiation did its job. Of course there will still be MRIs every three months just because.
Had my first EEG this past Friday as well. Trying to decide if I need to stay on the anti-seizure medication I've been on since my "episode" back at the end of September. Sounds like the neurologist wants to keep me on it for now. But I will be meeting with him again next month to talk more about it. Despite staying awake all night in order to be able to sleep on demand for the EEG, I failed to fall asleep on demand. Though I was falling asleep at the beginning until they woke me up with flashing lights and breathing exercises and a very uncomfortable lump of towel for a pillow. Ah well. Appears they got what they needed for the scan anyway.
On the chemo front... fifth session for this round is in process. Monday was infusion and I've still got this pump on. I haven't named this one because I've been too busy packing many, many bags. My toleration is okay this time around. Pretty loopy on Monday, but peppy enough today to be productive.
So what am I packing for? Most of you already know the answer to this - the great Pennsic War. Two weeks of camping in a medieval pavilion in the hills of Pennsylvania with more than 10,000 other SCA folks. As this is my only camping event for this year, I'm just that much extra stoked about it this time around. I've got a half filled car and am currently surrounded by almost enough bags and baskets in my room to fill the rest of it. Not much left to do except play Tetris with it all tomorrow. First time packing for this event in the new Subaru and I'm hoping it all fits.
When I return in two and a half weeks from my vacation, I'll have the last chemo session for this round. Probably first of September for my next PET scan to determine whether we take a break or continue with more chemo. Obviously I will keep you informed as that all comes to pass. Until then, I hope everyone finds some joy in these coming weeks. And for those of you headed to Pennsic, I look forward to seeing you very soon!
I had another brain MRI last week and received the results on Friday. All good news. First off - no new tumors! Woot!! Secondly, the large tumor on my occipital lobe has stabilized and there is still no evidence of the other three small tumors. So it looks like the radiation did its job. Of course there will still be MRIs every three months just because.
Had my first EEG this past Friday as well. Trying to decide if I need to stay on the anti-seizure medication I've been on since my "episode" back at the end of September. Sounds like the neurologist wants to keep me on it for now. But I will be meeting with him again next month to talk more about it. Despite staying awake all night in order to be able to sleep on demand for the EEG, I failed to fall asleep on demand. Though I was falling asleep at the beginning until they woke me up with flashing lights and breathing exercises and a very uncomfortable lump of towel for a pillow. Ah well. Appears they got what they needed for the scan anyway.
On the chemo front... fifth session for this round is in process. Monday was infusion and I've still got this pump on. I haven't named this one because I've been too busy packing many, many bags. My toleration is okay this time around. Pretty loopy on Monday, but peppy enough today to be productive.
So what am I packing for? Most of you already know the answer to this - the great Pennsic War. Two weeks of camping in a medieval pavilion in the hills of Pennsylvania with more than 10,000 other SCA folks. As this is my only camping event for this year, I'm just that much extra stoked about it this time around. I've got a half filled car and am currently surrounded by almost enough bags and baskets in my room to fill the rest of it. Not much left to do except play Tetris with it all tomorrow. First time packing for this event in the new Subaru and I'm hoping it all fits.
When I return in two and a half weeks from my vacation, I'll have the last chemo session for this round. Probably first of September for my next PET scan to determine whether we take a break or continue with more chemo. Obviously I will keep you informed as that all comes to pass. Until then, I hope everyone finds some joy in these coming weeks. And for those of you headed to Pennsic, I look forward to seeing you very soon!
Wednesday, July 13, 2016
Wait... What?
You are probably expecting some information about my MRI. But I am here to tell you that I was entirely wrong about my own schedule. We will just blame it on the chemo brain and continue to pretend that I'm not getting older and just forgetting stuff.
So... I *did* have a brain thing scheduled for last week. But it was just a meeting with the neurologist to discuss keeping me on or taking me off the anti-seizure medication I have been on since my "episode" that led us to the first MRI that found the brain tumors. As I was alone when I passed out last September, no one can know if I actually had a seizure or just passed out. I've reduced the dosage and they are uncertain if I am now taking enough, or if it is even needed since I have had no other episodes or vertigo or issues with my head. I'm scheduled for an EEG (both awake and sleeping) at the end of next week. Which will be when I also get the results from my next MRI which is this coming Monday. And yes, I even just double checked my schedule so I don't fib again.
Before then, however, we have a new chemo pump (Margaret). Yesterday was chemo session number four - only two more to go for this round. My best girl was with me again and made sure I was properly fed, watered, entertained and safely deposited back home to sleep like crazy. Other than a woozy head and a rumbly tummy yesterday, my toleration this round is very good. I ate a whole dinner last night and even three meals today. My hydration levels are fantastic as my many, many middle of the night potty breaks made clear. I have reached that point where I am completely tired of this weight hanging off my shoulder and counting the hours until tomorrow afternoon when I'll be free of this infernal device. Margaret, you're a bit of a pain in the ass; properly named. As this is the poem by your namesake that led me to your naming.
You fit into me
like a hook into an eye
a fish hook
an open eye
Between all the medical stuff I was able to get in some more excellent family time and some wonderful catching up with my aunt from Texas. There were a couple of solid days hanging out with some of my girls. And this weekend I was honored to attend an "adventure" wedding of some dear friends. Bride-napping, spell casting, art, spontaneity, flash mob, a serenade, kidnapping, a pirate battle, harmony, toasts, vows, dancing, and smiles from face to face everywhere. Such a memorable day with many amazing people. And *after* all that, I even got to visit a museum and get some of my photography on. Whew!
This is why I am excited to wake up every day. Even on the tough days when I am literally weighed down by my disease. There seems to be some possible happiness around most every corner. I am always seeking it. Turn your face to the light my friends... be it the warm sun, the growing moon, or the love-light around you... seek the happy, or create it with your smile.
So... I *did* have a brain thing scheduled for last week. But it was just a meeting with the neurologist to discuss keeping me on or taking me off the anti-seizure medication I have been on since my "episode" that led us to the first MRI that found the brain tumors. As I was alone when I passed out last September, no one can know if I actually had a seizure or just passed out. I've reduced the dosage and they are uncertain if I am now taking enough, or if it is even needed since I have had no other episodes or vertigo or issues with my head. I'm scheduled for an EEG (both awake and sleeping) at the end of next week. Which will be when I also get the results from my next MRI which is this coming Monday. And yes, I even just double checked my schedule so I don't fib again.
Before then, however, we have a new chemo pump (Margaret). Yesterday was chemo session number four - only two more to go for this round. My best girl was with me again and made sure I was properly fed, watered, entertained and safely deposited back home to sleep like crazy. Other than a woozy head and a rumbly tummy yesterday, my toleration this round is very good. I ate a whole dinner last night and even three meals today. My hydration levels are fantastic as my many, many middle of the night potty breaks made clear. I have reached that point where I am completely tired of this weight hanging off my shoulder and counting the hours until tomorrow afternoon when I'll be free of this infernal device. Margaret, you're a bit of a pain in the ass; properly named. As this is the poem by your namesake that led me to your naming.
You fit into me
like a hook into an eye
a fish hook
an open eye
Between all the medical stuff I was able to get in some more excellent family time and some wonderful catching up with my aunt from Texas. There were a couple of solid days hanging out with some of my girls. And this weekend I was honored to attend an "adventure" wedding of some dear friends. Bride-napping, spell casting, art, spontaneity, flash mob, a serenade, kidnapping, a pirate battle, harmony, toasts, vows, dancing, and smiles from face to face everywhere. Such a memorable day with many amazing people. And *after* all that, I even got to visit a museum and get some of my photography on. Whew!
This is why I am excited to wake up every day. Even on the tough days when I am literally weighed down by my disease. There seems to be some possible happiness around most every corner. I am always seeking it. Turn your face to the light my friends... be it the warm sun, the growing moon, or the love-light around you... seek the happy, or create it with your smile.
Friday, July 1, 2016
C'mon, take on me
On Wednesday I jumped back into the middle of my current chemo round. This is/was number three of the six sessions. My portacath was being cantankerous and it took 2 1/2 hours to get a blood return before we could start the infusion. And of course it was a day when I forgot to put lidocaine on the port, so they punched through *three* different times with needles trying to get things going. Ugh. After two rounds of tPA (tissue plasminogen activator) to break up the build up of blood clot(s) at the port entry, we finally got a very strong blood return and there was much rejoicing. Immediately tempered by the recognition that we could go through with the day's poisoning. It's a strange world to live in sometimes.
I've been feeling pretty fantastic during this 5 1/2 week break from the chemo. I hadn't realized how slowly it had drained me over the seven months I'd been solidly on chemo. And I figured this week's session would either be tolerated very well, or would hit me like a ton of bricks. I am happy to report that it has mostly been the former. Though today has been all about the sleeping.
This makes us halfway through this (hopefully last for a while) round. And I expect to be finishing up in mid-August.
In the meanwhile between last post and this one I've been, per usual, a very busy gal. Got a lovely visit in with family both near and far and, most excitedly, got to spend several days at the beach in the Outer Banks in North Carolina. First time in the Atlantic Ocean and it was glorious. Met a whole crew of new people, hunted for shells on the beach, poker, karaoke, late night wave watching, dolphins (!), plenty of pool and hot tub time, and a luxurious two-day drive back to Michigan. Best vacation I've had in a while.
Today I will go and have Catherine (current pump) removed in a couple of hours and then head right back to my sister's place to visit some more far-flung visiting family. And next week will be another brain MRI. I'll have the results at the end of the week, and will be certain to make another update at that point. Until then, I hope y'all are enjoying the glorious summer days.
I've been feeling pretty fantastic during this 5 1/2 week break from the chemo. I hadn't realized how slowly it had drained me over the seven months I'd been solidly on chemo. And I figured this week's session would either be tolerated very well, or would hit me like a ton of bricks. I am happy to report that it has mostly been the former. Though today has been all about the sleeping.
This makes us halfway through this (hopefully last for a while) round. And I expect to be finishing up in mid-August.
In the meanwhile between last post and this one I've been, per usual, a very busy gal. Got a lovely visit in with family both near and far and, most excitedly, got to spend several days at the beach in the Outer Banks in North Carolina. First time in the Atlantic Ocean and it was glorious. Met a whole crew of new people, hunted for shells on the beach, poker, karaoke, late night wave watching, dolphins (!), plenty of pool and hot tub time, and a luxurious two-day drive back to Michigan. Best vacation I've had in a while.
Today I will go and have Catherine (current pump) removed in a couple of hours and then head right back to my sister's place to visit some more far-flung visiting family. And next week will be another brain MRI. I'll have the results at the end of the week, and will be certain to make another update at that point. Until then, I hope y'all are enjoying the glorious summer days.
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