The hits keep coming...

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.

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.

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.

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.

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?

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.

"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.

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.

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.

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. 

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.

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.

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.

War *unh* what is it good for?

Hello and cordial greetings! I have joyously returned from my campaign traveling to the War in Pennsylvania. Such a glorious time was had. I had a spacious dining fly "porch" that quickly became dubbed the "champagne lounge." Ironic, considering we had no champagne. But there *was* lots of sangria. Or, as one new visitor called it, shangri-la. And so the evenings passed fairly wine-soaked, and the days passed slowly and melting-ly in the heat of the sun. I had two goals for this year's War, and I can say with confidence that I successfully attained them both. The first was to take time for friends and campmates - tending requests for visits; making a hospitable space for all; spending quality time with those I truly care for. The second was to find a place of temperance. This is somewhat related to the first. To balance my time, my attentions, my wine consumption, my resting, Me. And so it was... though, it was the laziest Pennsic ever for me. There was tons of lounging with music and books and conversations. It was a true vacation this year.

Upon my return, I jumped directly into the last session of this third chemo round. Had more nausea than usual this time around. And I slept most of Tuesday into oblivion. I'm certain some of that was resting from my vacation. But even through today I've been wiped out. Since the pump has been off this afternoon, I have felt a bit peppier, though not near a hundred percent. I expect the morning tomorrow will find me feeling much better.

Next on the cancer front is a PET scan in the middle of September. Results the third week of the month, and, depending on the report, possibly starting a fourth round of chemo instantly. However, I am hoping that the report, post radiation and this last round, will be clear enough for a break in treatment.

Nothing else has happened in the last couple of weeks. Vacation and all the fun that it brought. Now I start to prep for my trip to Paris in just over two short weeks. Yay!! Super excited to go to one of the most iconic cities in the world; a place full of wonderful art, amazing food, fantastic wine, stylish population, and loads of history. It is only a 6 day trip, but I expect it to be fantabulous.

Don't believe I have any pithy, optimistic bits for you this evening. So... I hope you are all well or working your way towards better. *mwah*

I got some wild, wild life

Good evening people of the internet. A few bits of news to catch you all up on, and ongoing adventures to follow.

I had another brain MRI last week and received the results on Friday. All good news. First off - no new tumors! Woot!! Secondly, the large tumor on my occipital lobe has stabilized and there is still no evidence of the other three small tumors. So it looks like the radiation did its job. Of course there will still be MRIs every three months just because.

Had my first EEG this past Friday as well. Trying to decide if I need to stay on the anti-seizure medication I've been on since my "episode" back at the end of September. Sounds like the neurologist wants to keep me on it for now. But I will be meeting with him again next month to talk more about it. Despite staying awake all night in order to be able to sleep on demand for the EEG, I failed to fall asleep on demand. Though I was falling asleep at the beginning until they woke me up with flashing lights and breathing exercises and a very uncomfortable lump of towel for a pillow. Ah well. Appears they got what they needed for the scan anyway.

On the chemo front... fifth session for this round is in process. Monday was infusion and I've still got this pump on. I haven't named this one because I've been too busy packing many, many bags. My toleration is okay this time around. Pretty loopy on Monday, but peppy enough today to be productive.

So what am I packing for? Most of you already know the answer to this - the great Pennsic War. Two weeks of camping in a medieval pavilion in the hills of Pennsylvania with more than 10,000 other SCA folks. As this is my only camping event for this year, I'm just that much extra stoked about it this time around. I've got a half filled car and am currently surrounded by almost enough bags and baskets in my room to fill the rest of it. Not much left to do except play Tetris with it all tomorrow. First time packing for this event in the new Subaru and I'm hoping it all fits.

When I return in two and a half weeks from my vacation, I'll have the last chemo session for this round. Probably first of September for my next PET scan to determine whether we take a break or continue with more chemo. Obviously I will keep you informed as that all comes to pass. Until then, I hope everyone finds some joy in these coming weeks. And for those of you headed to Pennsic, I look forward to seeing you very soon!

Wait... What?

You are probably expecting some information about my MRI. But I am here to tell you that I was entirely wrong about my own schedule. We will just blame it on the chemo brain and continue to pretend that I'm not getting older and just forgetting stuff.

So... I *did* have a brain thing scheduled for last week. But it was just a meeting with the neurologist to discuss keeping me on or taking me off the anti-seizure medication I have been on since my "episode" that led us to the first MRI that found the brain tumors. As I was alone when I passed out last September, no one can know if I actually had a seizure or just passed out. I've reduced the dosage and they are uncertain if I am now taking enough, or if it is even needed since I have had no other episodes or vertigo or issues with my head. I'm scheduled for an EEG (both awake and sleeping) at the end of next week. Which will be when I also get the results from my next MRI which is this coming Monday. And yes, I even just double checked my schedule so I don't fib again.

Before then, however, we have a new chemo pump (Margaret). Yesterday was chemo session number four - only two more to go for this round. My best girl was with me again and made sure I was properly fed, watered, entertained and safely deposited back home to sleep like crazy. Other than a woozy head and a rumbly tummy yesterday, my toleration this round is very good. I ate a whole dinner last night and even three meals today. My hydration levels are fantastic as my many, many middle of the night potty breaks made clear. I have reached that point where I am completely tired of this weight hanging off my shoulder and counting the hours until tomorrow afternoon when I'll be free of this infernal device. Margaret, you're a bit of a pain in the ass; properly named. As this is the poem by your namesake that led me to your naming.

You fit into me
like a hook into an eye

a fish hook
an open eye

Between all the medical stuff I was able to get in some more excellent family time and some wonderful catching up with my aunt from Texas. There were a couple of solid days hanging out with some of my girls. And this weekend I was honored to attend an "adventure" wedding of some dear friends. Bride-napping, spell casting, art, spontaneity, flash mob, a serenade, kidnapping, a pirate battle, harmony, toasts, vows, dancing, and smiles from face to face everywhere. Such a memorable day with many amazing people. And *after* all that, I even got to visit a museum and get some of my photography on. Whew!

This is why I am excited to wake up every day. Even on the tough days when I am literally weighed down by my disease. There seems to be some possible happiness around most every corner. I am always seeking it. Turn your face to the light my friends... be it the warm sun, the growing moon, or the love-light around you... seek the happy, or create it with your smile.

C'mon, take on me

On Wednesday I jumped back into the middle of my current chemo round. This is/was number three of the six sessions. My portacath was being cantankerous and it took 2 1/2 hours to get a blood return before we could start the infusion. And of course it was a day when I forgot to put lidocaine on the port, so they punched through *three* different times with needles trying to get things going. Ugh. After two rounds of tPA (tissue plasminogen activator) to break up the build up of blood clot(s) at the port entry, we finally got a very strong blood return and there was much rejoicing. Immediately tempered by the recognition that we could go through with the day's poisoning. It's a strange world to live in sometimes.

I've been feeling pretty fantastic during this 5 1/2 week break from the chemo. I hadn't realized how slowly it had drained me over the seven months I'd been solidly on chemo. And I figured this week's session would either be tolerated very well, or would hit me like a ton of bricks. I am happy to report that it has mostly been the former. Though today has been all about the sleeping.

This makes us halfway through this (hopefully last for a while) round. And I expect to be finishing up in mid-August.

In the meanwhile between last post and this one I've been, per usual, a very busy gal. Got a lovely visit in with family both near and far and, most excitedly, got to spend several days at the beach in the Outer Banks in North Carolina. First time in the Atlantic Ocean and it was glorious. Met a whole crew of new people, hunted for shells on the beach, poker, karaoke, late night wave watching, dolphins (!), plenty of pool and hot tub time, and a luxurious two-day drive back to Michigan. Best vacation I've had in a while.

Today I will go and have Catherine (current pump) removed in a couple of hours and then head right back to my sister's place to visit some more far-flung visiting family. And next week will be another brain MRI. I'll have the results at the end of the week, and will be certain to make another update at that point. Until then, I hope y'all are enjoying the glorious summer days.

Egads!!!

So... it has been a month since I have posted anything. And being in the middle of treatment and all, this is quite a space to have left you all in. Whatever have I been up to?!?

Mostly, and most boringly, I've been doing radiation. Three weeks to be specific, and as of Thursday this last week, done with radiation. We just did three weeks, with two very small fields on both the primary and secondary metasatic tumors in my lungs. And in a week and a half I will jump back into my chemo schedule. There are four more sessions to go in this third round. I am hopeful that this radiation will allow me to have a more extended all-treatment break at the end of this chemo session in August.

Daily radiation had me Kalamazoo-bound for most of this last month. (Though I did sneak in one little weekend excursion.) But some far-flung girlfriends have been in town and I've certainly been getting out and enjoying the early summer in style. There was the local Art Fair at the park and on the walking mall. Throw in some movies here and there at my favorite downtown theater. Tea and patio/deck/pool time at various friends' places. I was almost made a princess. Plus, there has been some live music, local beers, patio games, a proper bbq, new friends, and even some dancing. I may have cancer, but the living is still so fine.

I've been in a bit of a weird state today. Because Facebook reminded me that as of today (technically yesterday) three years ago, I was declared clear of my cancer. We reached that enviable state of N.E.D. (no evidence of disease), which was the first step towards remission. After a year and a half of fighting this thing, I had "won."

But really, I knew it was only temporary. That may be one of the things that your friends with cancer history don't tell you... you are always worried. For years, you will stay worried and vigilant because the damned bitch of cancer might be back at any moment to bite you in the ass and remind you of your fragile hold on this thing called Life. So you throw that voice of worry into a box in your mind, and you focus on the days you have, and the good people in your life... and you don't stop long enough to let the lingering echoes of that worried voice resonate in your mind.

So here I find myself... at the crossroads of the anniversary of my NED status, and just starting a week and a half of vacation in the middle of this current eight-month long treatment schedule. No longer NED, no longer safe, no longer secure. And yet, I am so very happy in these recent days. Again, I am finding that each day is a gift, each person in my life is a blessing, every small pleasure is something to celebrate. I take nothinng for granted. I fill my days with people and pleasures. I shall not be taken down by the gravity of my condition or the desperate state of our world and times.

Today I am alive. Today I have kissed the forehead of my adored tow-headed nephew more times than I can count. Today I have felt loved. Today I have laughed. Today I have grown just a sliver closer to my sister. Today I enjoyed and reveled in a perfect sunny summer's day. Today I sat and watched the gibbous moon move across the sky. Today has been good. Tomorrow will also be good. But... I am here, just right here in this moment. Writing these words that I hope will touch someone. Tomorrow will be a blessing, another lucky day, a chance for more opportunities, a time to share love. And I will revel in the opportunity for another day. Join me friends.

Back to the gypsy that I was...

So we are back on the chemo pump again. I'm continuing with my naming practice to attempt an amount of befriending in my mind. This one is Jarvis. Too bad it doesn't talk to me.

This makes session two of this third round in a row. However, it does appear that a break from it may very well happen after the end of this round. Which, and this is where the mixed news comes into the picture, will be into August at this point. I received a phone call last week that my radiation oncologist wanted to see me soon. Odd, considering I had no reason to hear from her until my next MRI in July. Turns out that when my case was brought up to the tumor board two weeks ago, they decided that they wanted to address the left secondary metastatic tumor that has increased in uptake and size in the last three months. It could be that this tumor is clone cells and could have already mutated to no longer react to the chemotherapy regimen. However, no tumor can escape the wrath of radiation. We (my medical team and I) have always taken an aggressive tack in regards to my treatment. Being as healthy and young as I was from the beginning of all this, I've been able to handle and bounce back from everything we've thrown at me. So we continue to stay aggressive.

This means that we are going to shoehorn in some radiation in the middle of this chemo round. At first we were only going to radiate the left tumor, but after another meeting we've decided to do two small stereotactic radiation fields on both the primary and the secondary tumors, left and right. Because why not? It will absolutely have an effect and, if we are very lucky, will turn the tumors into scar tissue and no longer metabolically active tumors.

I have already been in for my CT simulation to get my triad of tattooed dots across my chest and to establish my breathing pattern and movement so the radiation fields can be made as small as possible. I'll start the radiation treatment next week. It will be a course of 15 sessions over three weeks time. I'll have to go in every weekday for about 30 minutes or so. Which means I am K'zoo bound for a little while. I will restart the chemo at the very end of June and should finish mid-August. If the PET scan in August shows excellent reaction to these treatments, then we are definitely taking a treatment break for a couple/few months. My guess is that there will be another PET scan three months after the August one, and we will see what activity there is (or isn't, fingers crossed) and make new decisions at that point. Meanwhile I am already making plans for trips to Paris, California, and possibly Italy in the fall and early winter. Exciting times possibly coming up!

Also meanwhile, I'm in the middle of the moving process. My roomie and I have decided that after a fabulous year of living together we are both ready for a change. By the end of this week I will have moved back into Kalamazoo proper with a pair of wonderful new roommates. Everyone all around is excited for the move and the changes. And the first batch of boxes has already been dropped off. Another beautiful new chapter is beginning.

My lovely chemo buddy puzzling
over the puzzles.