Friday, July 7, 2017

Summer sun something's begun

Hello, hello, hello! I return to the clear the cobwebs from around here fresh off an absolutely fantastic week at the Outer Banks beaches. I am still buzzing from the good times, slightly less sunburnt, a bit worn yet from sunrises and late, late nights, but settled back in fully unpacked and laundered. A most excellent kick off to summer festivities and fun.

Diving directly into the medical stuff... so those last appointments with my radiologists and pulmonology were more impactful than I expected. Talking to my radiologists about my new breathing difficulties, and the lacing of blood in my phlegm that morning, they immediately (almost in stereo unison) said "radiation pneumonitis." The symptoms started almost 4 weeks to the dot from my last radiation and were pretty clinically standard for this. Essentially it is inflammation of the lungs in reaction to said radiation. It's angry and swollen, but luckily there is a rather easy solution - the steroid prednisone. I am about halfway through the run now and have definitely seen improvement. So long as I don't overexert myself it is not really slowing me down that much. (Though, there is that whole "moonface" look that I just can't quite get used to.)

This treatment break has felt like the best vacation ever. There's still a doctors appointment somewhere most weeks (though I did have a 2+ week break!). But my body has rebounded in spades from the lack of poison in my life. So often while in treatment I was at the direction and mercy of my body. I might have plans or expectations for the day, and then my body would change the direction of the day or even just flat-out say "NO!" to everything. I've learned to be even more mutable than I was in the BC (before cancer) days, but I do still dislike having my options limited. There is also that whole control thing. It's awfully nice to be able to make decisions for myself versus having them forced upon me. It has been nine weeks since any type of treatment and, to be completely honest, there is some part of my mind that really hopes next week's newest scans show everything is all clear again. It will be two weeks from now before I get the results... yet my hope and optimism have somehow rebounded as well in these warm summer days. Could there possibly be some time with N.E.D. on my horizon? This thought has come to me. I am as scared of it as I am enticed.

*sigh*

It is funny how the mind works. As a casual dabbler and gourmand of psychology, I am always diving down the rabbit hole of trying to figure out how I got where I am in my head. When I have been in the middle of the cancer shite with treatments and all, my mind is always hoping for the best results at every scan: shrinkage and/or disappearance of tumors. When I was in N.E.D., clear and fancy-cancer-free, my mind was caught up in the fear and scanxiety of new tumors with every scan. I now find myself somewhere between those two spaces. I am not N.E.D. and I am also not in treatment. So my natural state of optimism has stepped in and has whispered this possibility to me. Bourne upon the soft wind of the bedroom fan in the wee hours of the morning.

I sit with this thought, with this possibility; also with the fear of this possibility being untrue.

And I am unsure where that puts me. At this moment it puts me at the brewery that is essentially just around the corner from my house. Using the dimmed light ambience of a local pub, the rise and fall of conversation and occasional bouts of laughter in the air, the occasional bursts of chatter with the waitstaff, and pauses for people-watching to calm me while I pretend that I have grand prescient thoughts to throw out to the universe.

I am in love with my life these days. And that makes me more desirous of a clean bill of health. It makes me even more aware of all the future events I have to look forward to. It makes me feel more alive than I have in years. What more could I desire than even More?

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.