Sunday, June 4, 2017

Summertime makes me feel fine...

Sometimes it is hard to motivate to update simply because I don't know how to start. It feels like I'm starting the conversation with you, but in the middle of the story. And narrative is easier when you start with the beginning. My life is kind of jumbly right now. And by that, I mean that many days are unplanned and I meander through them doing and accomplishing things, and sometimes lazing some time away. The lack of structure combined with choice and an exceptionally comfortable space often has me set some task aside momentarily and then find myself distracted by some other task or going-on. Little mental piles on the hall table of my mind. And some days you just choose a pile that you *will* work on that day. Which is what brings me to the keyboard now.

I am on a small break from treatment at the moment. A couple of weeks ago I was feeling better than I had in six months or more. My breathing felt good and full, which meant my endurance was better. I even started exercising again. However, got a little setback with my breathing about a week and a half ago. Hoping it was perhaps a summer cold I picked up. Using my inhalers again seems to help, but I'm having endurance frustration again. Occasionally still struggling with being easy on myself. I think I got so super excited about feeling better that any setback is taken hard. Especially since I want to take full advantage of this treatment break.

About that break... last visit with my oncologist he put the option on the table. We had an active discussion about it and decided that it could be a good move to let my body rest and recuperate from an almost solid year and a half of chemotherapy. Of course, we are on the lookout for any problematic symptoms or new problems. But otherwise it's a lovely change of pace from the constant appointments. I'll see my oncologist again in a couple of weeks. And we will line up CT and MRI scans in early July. I have a couple of follow-up appointments tomorrow with radiology and my pulmonologist. No expectations from these, just basic check-ups.

Hoping to enjoy this first month of summer with an open schedule. Try to get some walking in for exercise and some time out and about doing some photography again. Expecting to spend the last week of the month at the Outer Banks in North Carolina. Otherwise exploring the area around my new home and enjoying the beautiful weather.

Friday, April 28, 2017

"Stay in bed, float upstream"

Well, the last two weeks got very suddenly chaotic and busy. As I've briefly mentioned, I've been having breathing problems and a chronic cough for most of this year. It was mostly a cough caused initially by some sinus congestion in the early winter, and then aggravated by a cold and then just the cold weather for a while. But then it just hung around and as my breathing capacity started to wane, it continued and changed. I noticed on our vacation (and *all* the stairs and hills in Funchal, Madeira) that I got winded much easier than before, and not necessarily because I'm a bit out of shape. Even after vacation, it was slowly becoming more difficult to get a full breath and I tired more and more quickly from simple things like a single set of stairs or keeping my normal quick walking pace for any distance past a couple hundred feet. I see my oncologist every other chemo treatment, which equals about once a month. Each time he suggested trying something new... we tried a short round of antibiotics, a steroid inhaler, cough suppressant and throat analgesics, and then he booked me to see a pulmonologist.

The pulmonologist scheduled me for an endoscopic bronchoscopy to take a look-see. I had one of these for a biopsy early last year, so I knew what to expect from the procedure. It's full anesthesia but still outpatient surgery. However, I did have a somewhat severe post-reaction to the anesthesia. First time that has happened. Monumental muscle pain for two days following; the first day keeping me attached to the couch rather than attending an SCA event called Terpsichore that I was hoping to make. Ah well... as always I roll with it all as best I can. (And, boy, am I catching up on show queues!) The results from the bronchoscopy were a biopsy of a new left lung tumor just at the bronchial tube entrance. It is a new metastatic tumor, and had created some atelectasis (collapsing of the alveoli/air sacs) across the upper part of my left lobe. This explained the breathing, coughing, and newest wheezing issues.

To address this new finding, we scheduled me to see my new radiologist again to talk about the possibility of a radiation treatment for the new tumor. That appointment was Tuesday a week ago. I awoke that morning with a new pain in my high upper left chest whenever I coughed or bent over or tried to pick up anything with my left arm. We discussed the last few months and this new morning's development with the radiologist, and they sent me home with a new pain prescription and some specific warning signs that would incite me to go to ER or come back to see the doctors. The next morning (Wednesday of last week) we had an appointment for my oncologist and the latest chemo treatment session.

I had awoken *that* morning with increased pain in my upper chest, and severe spots of pain in both the upper left and right chest area. Before we even left the house I had decided that there was no way I could do chemo on top of this new extraordinary pain which the new prescription was not touching. I was also finally able to cough up some phlegm and had noticed at least half of it was blood. Needless to say... soon as you are coughing up some blood, people start paying very close attention and moving very quickly.

My oncologist decided to admit me to the hospital pretty much immediately. He suspected I had pneumonia and wanted me on antibiotics and stronger pain meds as soon as possible. I have to applaud the efficiency of things that day. Within a couple of hours I was in a room being filled with fluids, antibiotics and pain meds. Then began the merry-go-round of doctors and teams of doctors to see me, check my pulse and breathing, ask the same questions, and pass away with nefarious promises of early morning visits the next day. And thus began night one in the hospital. Couldn't say I've missed being in a hospital. But, to be honest, this was the happiest I was to be checked in to the hospital. The down slide in just 24 hours time was no fun and the medications and constant care were exactly what I knew I needed at the time.

The next day was one of the busiest, chaotic, confusing and hazy of my cancer memories. The morning started super early (5:30) with vitals and morning meds. My radiology team moved my radiation simulation (first radiation field set-up and dry run with the doctors on-hand) to 9:15 that morning, with a first radiation round to be shoe-horned into the schedule later in the same afternoon. Soon as I spent an hour on a hard table in radiation, I was whisked to a CT scan so I could lay on another hard table for a half hour. We were returned to my room, and immediately set upon by rounds of doctors and their teams to ask new questions, talk about my CT scan, discuss the treatment options, and somewhat disagree on whether I had pneumonia or not. Please note... I was on good pain meds for a lot of this... so thank goodness for a partner who keeps really good notes and writes all the big new words down.

Then I was taken back down into the radiation labs for my first big dose treatment. Returned to the room to a very cold lunch and even more doctors to keep me busy for a couple of hours. By the time four o'clock rolled around, I was simply ready to ban everyone from my room for fifteen minutes of quiet and closing my eyes and not thinking. It did finally slow up by 6/7 PM, and I have to give my night nurse credit for letting me sleep through the 3 AM breathing treatment instead of waking me. An almost full night's worth of sleep, in a hospital no less -- bliss.

By Friday morning I was feeling better than I had in a month. The rounds of antibiotics, the breathing treatments several times a day, and all the extras had me breathing far more clearly and feeling much improved over the last month's time. Got a second extra-strong dose of radiation on Friday, some wonderful company for the night from my doting sister, and another nearly undisturbed night of sleep. They decided to let me loose from the hospital on Saturday with a handful of new prescriptions.

I've been in recovery mode for most of this week. Though I have had daily lung radiation all workweek. I have two more radiation treatments next Monday and Tuesday and then we are done with this little detour in my treatment. I don't see my oncologist until the middle of May (mostly because he's on vacation for another week or so). But that means a continued little break from the never-ending chemo treatments, so I am a somewhat happy gal.

I've got a slew of new appointments to see all the sets of doctors from the hospital over the next couple of weeks. There will be pulmonology, infectious disease, my oncologist, and radiology again a few weeks after the radiation is complete. Sounds like a follow-up CT scan in the short weeks ahead as well, though that could be put off for another six weeks to wait until the radiation has completed its "half-life" post-treatment.

I am *assuming*, let me repeat, ASSUMING.... that I will get back onto the systematic chemotherapy regimen by the end of May. Hopefully the radiation will have stalled, or (in an ideal world) completely obliterated the new tumor. My breathing continues to be better than before my hospitalization. Though my wheeze still shows itself a couple of times a day. The coughing has greatly subsided, though continues to pop up a couple to a few times a day. I am on antibiotics for another couple of weeks and for this first week or so limiting my exposure to too many people until we feel like the pneumonia has cleared.

An all-medical update. Though really, it's kind of been my main activity these last couple of weeks. I swear this illness is a full-time job. I've even run the numbers to prove it. Perhaps that is a future post here on the blog. Until then, I hope the rest of you are feeling fine and enjoying the lovely spring weather and popping of all the flowers and leaves. It's a more beautiful view every day.

Sunday, April 2, 2017

A distant ship smoke on the horizon

Trips abroad: 1
Scans/biopsies: 4
Chemo sessions: 4 and continuing
Results: 50/50

Been a little busy in the last expanse of time from last post to this one. Some of it completely amazing, and other days less so. Seems to be the new balance of my life.

Just last week I did the first session in the newest chemotherapy round; continuing with the indefinite nature of systematic treatment. This was following a whole set of scans from brain to bottom in just the last week's time.

Results for the most part tell us that there is very little change from the last set of scans. Which is slightly disappointing to me. I was enjoying the shrinkage that was happening with every chemo round before this. It boosted my hope and expectations. We seem to be in a bit of a standstill at the moment. With the unfortunate addition of a new lung tumor which has been causing its own other issues. I've had a persistent cough and ragged throat for a couple months now. We now know that this is at least partly caused by a small tumor in my upper left lung that has also created a small amount of collapse. This explains the inability to get a full breath and my easy tiredness.

We had a biopsy done through an endoscopic bronchoscopy on Friday. They said I should expect the results from that by the end of this coming week. Really all they want to know is if it is a new metastasis or something else entirely. My expectation (and the odds really) is that it is a metastasis. Which might drive us toward a conversation about this continued chemotherapy or the possibility of switching up the treatment. I am planning on coming in to the conversation with both my oncologist and the pulmonologist with no expectations and ready to learn more.

I have things to say about my trip and finding the new rhythms in my life recently. But those will have to come in another post when it's a little earlier and my brain isn't punching out.

Friday, February 3, 2017

Emerging From the Burrow

It's been a month of mostly hermitage for me. The cold and gray winter days often pull me indoors and inwards. It takes quite a pull to get me to don the many layers needed to traverse out into the cold, snow and blowing winds. And though I have often thought of updating here, I've been easily distracted and my thoughts too wandering to capture on a page.

This has been a slow and quiet month. I have been happily nesting into my new home. Yes, once again I have made another move. My belongings have become quite accustomed to their boxes. But I am slowly unpacking them in a more permanent manner. It has been comforting to find myself in a space that I can feel is somewhat mine as well. It has also made this latest round of chemo a more bearable ordeal.

As I mentioned in my last post at the end of the year, I've started another 6-session round. I have a new oncologist and a new treatment facility that is quite a step up in care and abilities. And though we are staying with the continuous chemotherapy run for now, I have some hope that further testing will expose future treatment options if/when this chemo loses its efficacy.

Infusion was Tuesday, and I finished with another damnable pump yesterday. It was a more difficult treatment week, which seems to be the way with this round so far. I try to simply focus on recovery, but some days I do look back upon the hours and wonder if I could have been somewhat productive instead. Then I am reminded, both internally and externally, that recovery week is just that - for recovery. Those productivity thoughts are just a holdover from years past when busyness was more the timbre of my days.

Luckily I have had a wonderful distraction for this week. Many months back my Paramour and I booked a trip to the Portuguese islands of Madeira and Sao Miguel. There was packing and research and plenty of excitement to prepare to leave today. We are already one leg in to a full two weeks vacation, one week on each island. (Currently on a rather long layover in Boston.) We will be going whale watching and also have a photography tour booked. We plan to take advantage of the hotel spas, the heated pools with views of the ocean, likely rent a car and fully explore the islands taking tons of pictures, and enjoying the warmer weather. Though it will only be in the 60's, perhaps eking right up to 70 degrees, it is certainly a lovely change from the cold and gray of Michigan winter. Not a bad way to spend my 44th birthday.

So I am off to get spoiled across the Atlantic. I shall definitely miss attending what would be my 24th Val Day in a row (SCA event). Though I believe that it won't wear on me too badly while I'm sailing along keeping an eye out for a variety of whales and dolphins that afternoon. Stay warm and happy my Friends.


Wednesday, December 28, 2016

Assiversary the Fifth

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. 

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.

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.
(Oct 1, 2010, after 10 PM)
"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."
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."

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.