The stent placement last month made a wonderful difference in how I was feeling and my ability to get out and about again. I celebrated first with a wonderful new haircut to get myself up out of the doldrums. We attended a fun music and art festival, a couple of shows, and even a dance night. I will admit that the dancing was more easy shimmying than raucous, but the music, atmosphere and people-watching was great. We were in great spirits and getting back into more normal patterns.
Unfortunately, one of the more difficult things about the cancer experience (or at least mine) is that about the time I get back on my feet from some treatment, or fixing the most recent issue, my knees get knocked out with some new problem. It seems to always be something ready to take me back down. There is incredible frustration in the continued adversities that crop up like unexpected gophers when you thought the whack-a-mole game was over.
This most recent setback found me stuck in the ICU for a couple of days. I started noticing some breathing issues again on Monday morning. Coming up the stairs just wore me out and my pulse/ox level (which ideally should be 95+) was dipping into the 80's with little exertion. Using oxygen seemed to quickly help the issue, so we moved into monitor mode. Checking my vitals often and me being hyper-aware of how my body was feeling and any changes. As the day went on the breathing issues continued to slowly decline. By Tuesday morning, even after having slept with the oxygen all night, there was significant tightness in the middle of my chest and it felt to me like there was no air getting into my left lung.
We packed a bag and headed off first thing to the hospital. At this point my breathing was continuing to decline, and quickly. First thing they did in the ER was take an x-ray. It showed that there was absolutely no air in my left lung and it was fully internally collapsed with atelectasis. I was put on an oxygen mask with 15 (!!!) liters and quickly moved into ICU. Something was blocking my stent and we would have to schedule another endoscopic bronchoscopy to get in there and see what was going on. The next morning I was in the OR again and it turns out there was a large mucus plug that had developed and completely clogged the stent. My thoracic surgeon was able to clear it out and just a couple hours after the procedure my breathing was back on course. A fresh x-ray showed the lower part of my left lung was filled with air again and clear of atelectasis. Spent the evening in the hospital for observation, but I was off oxygen again and my numbers were great.
Everybody was on board for me to be discharged on Thursday and I was feeling as good as I had the week before. One *lovely* night at home back in my own bed and I was excited for a full and easy recovery.
... and then comes the next kicker...
Had a small bit of blistering on my chest where the stickers for heart monitor leads had been. But Friday afternoon I had a swath of blistering across my right shoulder and the small areas on my chest had worsened. After quite a bit of googling hospital and bed rashes, we put some cream on the spots, let it air out a bit and I slept in a very loose shirt that covered it all. Spent a majority of Saturday on the feline schedule, sleeping in and napping at will. (Thanks to finally being off the Prednisone I can actually get solid and deep sleep.) Saturday evening it was clear that the blistering rash had spread and was becoming quite painful, though no itching. Headed into the closest urgent care facility this morning and they're pretty sure I have shingles. Harumph.
I won't have complete confirmation until the culture sample comes back. But it seems pretty obvious, and a lot of personal research later it does seem to be the best culprit. So now I am on an anti-viral medication, leaning on my pain pills heavily, and using lidocaine cream and an essential oil treatment to numb the pain and try to keep it under control. Unfortunately it is still spreading and there is little more we can do except stay on course and ride it out.
So, it constantly feels like someone punched me several times in the shoulder and chest. I am highly contagious by skin contact to anyone who hasn't had chickenpox. And I'm afraid that means lots more home-bound couch time for the next week or so until this gets better. *cue frustrating sigh*
Chumbawamba sang it clearly: "I get knocked down, but I get up again." And I am doing my best. But my metaphoric "knees" are pretty achy and I'm weary of being down on them again and again. It doesn't help that while I was in the hospital Thursday morning, a small gaggle of friends were flying out to Vegas for a long weekend of fun for which we were also booked. Nothing to be done about it except try to get our flight money back and seek another adventure for ourselves in the next couple of months. I'm fighting my way through it all. Tonight I'll distract myself with a Wonder Woman viewing, and remind myself that we can all be stronger.
Hopeful and Smiling
The best days are every day we wake up and choose to live.
Sunday, October 8, 2017
Sunday, September 10, 2017
Liar, Liar. Ned's on Fire.
So that week just sunk into oblivion.
I talked a lot about breathing in my last post. It was on my
mind because it was becoming harder every day. The home oxygen was a great
booster, but we had to keep upping the liter output to keep up with my
worsening condition. Called both my oncologist and pulmonologist on Wednesday
to let them know it was getting worse, not better or even staying the same.
Late in the afternoon I got a call back from the pulmonologist telling me to
pack and bag and head to the ER to be admitted for the evening. *Sigh*
I had an appointment with a cardio-thoracic surgeon on
Thursday to do a surgical consult about the stent placement. One of his team
came to talk to us Thursday afternoon and got all my signatures so they could
schedule it for the next day, Friday. One of the convenient things about being
in the hospital is that everything gets expedited. No more waiting for slots -
they just jam you in somewhere and get shit done ASAP. You are in STAT status
and it can be kind of nice. I don't know how the week and weekend would have
gone if I was just home on oxygen waiting until early this coming week for the
procedure. I would have been in very poor shape by now.
Instead, I have a happy stent in my lower left airway that
is allowing me to use the full capacity of my lower left lobe. Still no use in
the upper half, but it is way more than I've been using for about two months. I
can ambulate about without losing all my breath and take a shower without needing
a sit-down break afterward. My vitals the last two days have been in healthy
normal mode and I've been needing less and less oxygen again. Four nights/days
in the hospital and they sent me home this afternoon. So nice to be home on my
own couch in my pjs
Like us, you might be wondering why my condition was
worsening when that tumor was necrotic and we were all thinking I might be in a
state of N.E.D. Well, 3 CT scans in the last month show that stubborn tumor in
my left brachial airway was growing and cutting off more and more of the
airway. Harumph! Stupid, shitty tumor has been named Medusa ('cause she's
apparently a bitch to kill) and I meet with my oncologist on Wednesday to talk
about how we are now going to deal with her again.
I expect a new spate of appointments with the radiologist
and pulmonologist again to talk about all the options. I expect (hope) that my
case will be taken to the Karmanos tumor board soon as well. Time to get back
on the cancer horse and see where it takes me.
For the moment, I am feeling peppier and have better breath
and energy than I have in a couple of months. Although you're not allowed much
solid sleep in the hospital with all the poking and prodding every couple/few
hours, I did sleep better last night than I have in a week. That's the plan for
most of the next two days actually. Catching up on sleep and proper rest and
recuperation in my own space. Plus way better food.
Monday, September 4, 2017
All I need is the air that I breathe...
It has been quite a busy month. I successfully made it through two
Gamma Knife brain radiation treatments, with the holes in my forehead to prove
it. Those were some very long days. Arriving at 6 AM for check-in so I could be
taken in to get the metal halo placed on my head for ultimate immobility. They
then do a very precise MRI scan so they know exactly what they are looking to
radiate. There's a long wait while the radiologists and neurosurgeon create
their treatment plan. And then it is into the radiation room for as much time
as it takes. They literally screw me onto the table, which was somewhat
disturbing listening to the squeaking of the metal screws in the halo. And
strangely surreal considering this is the most up-to-date treatment available
and there is a doctor on each side of my head with a basic screwdriver re-adjusting
between every radiation angle change.
It is weirdly quiet in the Gamma Knife room. And because I was locked
into the machine for each angle change, the machines don't move like they have
in all my other radiation treatments. There is nothing to make any noise. They
did have a CD player and played me some rather relaxing and fine jazz and soul
music. Luckily, the early mornings and light sleeps combined in such a way that
I dozed off and on throughout each treatment. And the lack of a clock in the
room kept me from watching the time tick past. I did my best to just be
"along for the ride" and to be kind and thankful to all the
considerate caregivers that I had throughout each day. (Speaking of
caregivers... a public shout-out to my handsome Paramour for all his time and
attention. He is there for every single appointment, every single worried
night, every good day too. It is something amazing to be part of a true team.)
Some good news from the second radiation treatment - my radiologist
said that the second MRI scan showed that the left side they treated first was
looking exactly how they wanted. There will be a follow-up MRI in October to
look at everything again. With all the tumors treated and my torso showing
cancer-free, I am sort of, maybe, perhaps in a state of N.E.D. (no evidence of
disease) again. Quick fist-bump to everyone for that tidbit.
As is often the case with long-term cancer, I am dealing with another
related issue to all the treatments. The last lung tumor that we radiated
earlier this summer, although dead, is continuing to be a major obstruction in
the brachial airway on the left side. And since there is little or no oxygen
getting to the upper part of my left lung, there is still the internal collapse
(atelectasis) that is not getting the opportunity to heal. Taken together, my
breathing capacity is rather diminished as of late. It has slowed my pace and
my strength over the last several weeks. And especially started to become a
problem about a week and a half ago when I started to taper down my steroid
prescription again. That is twice now that a lower dose of the Prednisone has
led to another possible problem. So we've bumped it back up to a moderate level
again. Who knew, especially since I was so reticent to take it, that Prednisone
would actually be a good friend to me.
Luckily since we don't have to deal with cancer right now, we can focus
on my lung and try to come up with solutions for the breathing problem. We met
with my pulmonologist last week and they sent me home with orders for oxygen.
So now I have both at-home and on-the-go oxygen generators. It has made a huge
difference and my body is super happy to have regular levels of oxygen in my
system again. My heart rate has been high the last month because it's been
working overtime to move oxygen through my body. These last few days it has
moved back down into a lovely more normative range. I've been cooped up at home
mostly lately because it is just too much work for my body to get out and
about. The oxygen has helped and we were
able to get out of the house for a wonderful warm day at the Arts, Beats and
Eats festival yesterday to see a couple of our favorite local bands. The
portable tank may not be the sexiest fashion accessory I've worked with, but it
didn't seem to stop me from feeling pretty fierce.
The next step is to meet with a thoracic surgeon later this week. We will
most likely be talking about placing a stent in the left brachial airway to
move the dead tumor out of the way so that I can get back to breathing more
like a normal person. It is not a certainty, but both my oncologist and
pulmonologist agree that it is likely the best choice. I am just excited about
anything that widens the straw it feels like I am working to breathe out of
these days. As my Paramour is fond of reminding me whenever I get frustrated
with my slow pace and lessened abilities, breathing is one of the core
necessities for living. And we're working to get that fixed. For now, that's
all the medical news that is fit to print.
Outside of the multiplicity of medical appointments these days, we've
been catching up on a lot of Netflix and I've been trying to catch up on a
long-standing lack of sleep. Doesn't make for the most exciting of times but
I'm staying busy in my own way. The company here at home is stellar. Though on
workdays I sometimes find myself with too much space to think. I continue to
work on being gentle with myself, both physically and mentally. Though I won't
say that it is always easy. It is very easy to feel lazy when what I am truly
doing is giving my body the time and space it needs. It is a different world
than the go-go-go/do all the things mode that I am more accustomed to. But I am
learning to just breathe in the spaces between.
Wednesday, July 26, 2017
What's in your head, in your head?
Soooooooooo... ... ...
Most recent scan results are in, and game plans have been made. My body CT scan showed no evidence of disease in my lower body. Specifically it said that the tumor we most recently radiated a couple months back is now "necrotic." Dead and deader. Everything else seems to have stayed stable while I've been on this lovely chemotherapy break. Great news.
The less great news is that the brain MRI showed two new lesions, one in each hemisphere. It is also possible there is new growth in one or more of the old brain tumors. I've seen my new radiologist today (head of the department and a rockstar doc!) and we confirmed that we will be moving forward with Gamma Knife radiation to the new tumors. I don't have a date yet, but hopefully next week. I have to meet with a neurosurgeon first on Monday, as this procedure takes both radiology and neurosurgery working together. This procedure is a much more advanced, precise and effective one than the SRS (stereotatic) that I had a year and a half ago. One of the many advantages of my new health facility is that it is pretty top-of-the-line. As proven by my last round of brain radiation, there is hardly any downtime following. After just one day of rest I was back up, feeling perfectly normal, driving around and taking care of myself.
This does change my camping plans (Pennsic) for the next couple of weeks. Clearly first week is out for me. Nice thing is that I only paid for one week just in case something came up. If they can get me in for the procedure next week then I'm hoping to make it down to Pennsylvania for the majority of the second week.
This news has weighed me down a bit lately. I've been sitting with it, waiting for more news and a game plan before really talking about it openly. It's always easier for me to handle things when I have a direction and a plan. I can lean on the surety of that when I feel a little "off my feet." And, to be completely honest, brain tumors are the scariest for me. I'm fully confident in my doctors, in my care, in my partner, in my support network - I know this will be routine and effective. Still a little creepy. And the idea of my head being in a metal cage while they beam minute radiation waves in my brain is rather Clockwork Orange creepy. However... perhaps gamma radiation is what I need to kick off the superpowers waiting to be activated. Finally! I'll have the ability to reach the top shelf anything when I feel like She-Hulking up. A rather useful skill.
That's where we are. It is a "one foot in front of the other" time at this moment. I can still look around me and smile. Candlelight wavering under the soft breeze of the fan, incense drifting in the air, the shadow of my Paramour as he moves around in the kitchen behind me, a content cat sitting in window ledge, a bit of Dr. Strangelove on in the background, words flowing forth. Life has certainly been more difficult and less blissful in past times. I'm rather enamoured of Now. So I'm going to go sit in that Now space for a bit. Lovely evening to you all.
Most recent scan results are in, and game plans have been made. My body CT scan showed no evidence of disease in my lower body. Specifically it said that the tumor we most recently radiated a couple months back is now "necrotic." Dead and deader. Everything else seems to have stayed stable while I've been on this lovely chemotherapy break. Great news.
The less great news is that the brain MRI showed two new lesions, one in each hemisphere. It is also possible there is new growth in one or more of the old brain tumors. I've seen my new radiologist today (head of the department and a rockstar doc!) and we confirmed that we will be moving forward with Gamma Knife radiation to the new tumors. I don't have a date yet, but hopefully next week. I have to meet with a neurosurgeon first on Monday, as this procedure takes both radiology and neurosurgery working together. This procedure is a much more advanced, precise and effective one than the SRS (stereotatic) that I had a year and a half ago. One of the many advantages of my new health facility is that it is pretty top-of-the-line. As proven by my last round of brain radiation, there is hardly any downtime following. After just one day of rest I was back up, feeling perfectly normal, driving around and taking care of myself.
This does change my camping plans (Pennsic) for the next couple of weeks. Clearly first week is out for me. Nice thing is that I only paid for one week just in case something came up. If they can get me in for the procedure next week then I'm hoping to make it down to Pennsylvania for the majority of the second week.
This news has weighed me down a bit lately. I've been sitting with it, waiting for more news and a game plan before really talking about it openly. It's always easier for me to handle things when I have a direction and a plan. I can lean on the surety of that when I feel a little "off my feet." And, to be completely honest, brain tumors are the scariest for me. I'm fully confident in my doctors, in my care, in my partner, in my support network - I know this will be routine and effective. Still a little creepy. And the idea of my head being in a metal cage while they beam minute radiation waves in my brain is rather Clockwork Orange creepy. However... perhaps gamma radiation is what I need to kick off the superpowers waiting to be activated. Finally! I'll have the ability to reach the top shelf anything when I feel like She-Hulking up. A rather useful skill.
That's where we are. It is a "one foot in front of the other" time at this moment. I can still look around me and smile. Candlelight wavering under the soft breeze of the fan, incense drifting in the air, the shadow of my Paramour as he moves around in the kitchen behind me, a content cat sitting in window ledge, a bit of Dr. Strangelove on in the background, words flowing forth. Life has certainly been more difficult and less blissful in past times. I'm rather enamoured of Now. So I'm going to go sit in that Now space for a bit. Lovely evening to you all.
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?
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.
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.
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.
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.
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