Long time no blog…

…which means there’s either good news or bad news to share, and I’m afraid it’s the latter ūüė¶ ¬†No way to really buffer¬†the update, so I’ll just come out with it – liver mets (that’s cancer lingo for metastasis). ¬†Damn. ¬†Damn, damn, damn. ¬†5cm mass making a home for itself in a pretty important organ, though it could be worse and I’m grateful that 1. the CT scan showed all the other important trunk organs¬†were clear, 2. there’s only one tumor as opposed to multiple, and 3. even though the growth is not small, we probably caught it fairly early. ¬†¬†I’ve had several instances over the last few months where I experienced sharp to diffuse radiating pain in my abdomen up under the rib cage. ¬†Twice they did liver function tests and those were normal. ¬†I was told it was likely indigestion or something else gastrointestinal. ¬†Plus I’ve been losing weight like a mo fo (too much to be explained away by improved nutrition and exercise). ¬†Usually oncologists won’t do scans unless there are symptoms pointing toward metastasis, and being only 4 months out from finishing active treatment it seemed soon for another tumor to take hold (at least with ‚Äėnormal‚Äô breast cancers), but I convinced my onc to do the CT scan and here we are.

I’m writing this from the airport as I head off to Florida for 10 days of fun and sun, friends and family, relaxation along with some outdoorsy activity, beach drinks and beach volleyball.¬† The week I get back will be chuck full of more diagnostic tests/scans and appointments. ¬†There will be a liver biopsy to determine if these are, indeed, rogue metaplastic breast cancer cells that have infiltrated the liver or something new (not bloody likely). ¬†The onc is also sending samples off for gene sequencing to look for any markers that¬†might be¬†driving this beast and if there is anything¬†to¬†target on that front (though the results won’t come in for several weeks, so it’s more like bonus info for down the road once other treatment has started). ¬†They’ll do an MRI to check for brain mets (maybe my cray has a legitimate foundation!). ¬†My radiation oncologist is in on the convo at this point and she’d like to hit it with targeted rads. ¬†They are bringing in a surgical¬†oncologist that specializes¬†in all things hepatic¬†(Dr.¬†Emily Winslow…haven’t had a chance to do any research on her, yet) to look at the scan results and determine if the tumor is operable. ¬†Either route (or both?), they will likely opt to do a systemic treatment first, like chemo and/or immunotherapy, to shrink the tumor before going in with the localized approach. ¬†Sounding familiar?¬† My onc is also going to get in touch with Dr. Stacey Moulder @ MD Anderson in Houston, where they are leading the charge against metaplastic breast cancer through research and treatment, and hopefully she‚Äôll be able to weigh in with some sound advice.

That’s about it. ¬†You know what we know. ¬†I’ll keep folks posted as we find out more. ¬†This was a blow, no doubt‚Ķwould have been much easier to win this cancer fight if it didn‚Äôt decide to rear its ugly ass head again ūüė¶ ¬†But I‚Äôve been through this shit already once before, so I‚Äôm seasoned and ‚Äėcancer mature‚Äô enough to know roughly what to expect, be my own advocate, and continue to view each day as a blessing.¬† I also know there will be ups and downs, and I‚Äôll need help to push through on the tough days. ¬†I know you guys got my back, because I have the bestest support team ever!¬† The plan is to stay FIERCE!

For now, I’m going to hang¬†in Florida with friends and family while seeing if I can kill off some liver tumor cells with copious amounts of alcohol. ¬†If you are reading this on the fb, feel free to chime in with your own liver meme or gif, the more personalized the better (I know there are some creative folks out there ‚Äď give it your best shot!).

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Peace and love and hugs-

-JEB

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All I want for Christmas is…chemo?

Happy Thanksgiving, ya’ll! ¬†Hope you spent time doing something¬†that makes you happy¬†to be a human living on this planet. ¬†Family, friends, food, fabric, 500, whatever f-word floats your gratitude boat. ¬†I am mostly thankful¬†for all the amazing¬†people, near and far, that have supported me over¬†the last 11 months. ¬†I think that needs to be a whole post all on it’s own, yo, so I’ll start working on it. ¬†Other honorable mentions include yoga, Starbuck’s grande decaf two scoop chili mocha (my last sugar hold out), kitties, Shameless, Squatty Potty, the Bloggess, sleep, Madison, heated blankets, nature, soup, libraries, creativity, science, and laughter…so many more, my heart is full in many ways ‚̧

jeboob update:

I’ve had more than¬†a dozen medical appointments in the weeks following the return from my journey south. ¬†In addition to¬†a host of appointments at Froedtert Hospital in Milwaukee, there was the occupational therapist (tennis elbow on the left side, likely holdover from cording that occurred following¬†mastectomy and lymph node dissection), physical therapist (left lower back pain, plus my left hip is acting up again), acupuncturist (helping with any/all maladies currently occurring, physical and mental), head doctors (one therapist, one psychiatrist), dentist (felt weird but good to have an appointment unrelated to cancer or the fallout from associated¬†treatments), sleep doctor¬†(who referred me to an insomnia specialist that does cognitive behavior therapy…she’s booked out for almost three months…insomnia ain’t no joke these days, folks!), patient¬†navigator at UW Hospital (juggling all the correspondence between docs, nurses, researchers, and my insurance provider, at multiple different clinics/hospitals, was just getting out of hand for me – spending good chunks of my day on the phone or emailing back and forth, back and forth…cancer a full time job? ¬†TRUTH). ¬†I finally demanded a case manager through GHC and got one! ¬†Nancy is the bomb diggity and reducing my stress level significantly.

As for the clinical trial @ Froedtert, I had an echocardiogram and EKG followed by the first official office visit with the oncologist, Dr. Chitambar. ¬†I got a call back a few days later from the research nurse saying that my left ventricular ejection fraction (LVEF – more new terms to learn!) was below normal (running 46-49%, normal is 50-70%, I was 60% back in June after chemo just prior to surgery). ¬†It’s basically a measurement of the volume of blood the left ventricle is pushing out with each beat, a sort of measure of efficiency and muscle strength. ¬†My values were displaying borderline heart failure (sounds scarier than it is). ¬†50% was the absolute minimum¬†LVEF I needed to meet in order to be involved in¬†the study ūüė¶ ¬†However, since it had been so good back in June (even after the cardio-toxic doxorubicin¬†chemo I was on…thanks to Kevin for pushing the CoQ-10!), they figured the low volume ejection fraction was a result of cardiac damage incurred during radiation (cancer, it’s the gift that just keeps givin’!). ¬†They elected to schedule¬†another echo a week and a half later to see if there was any improvement. ¬†A few days before that second echo, I happened to be talking with my psychiatrist (first time meeting…a two month wait to get in to see her…at this point I think Maggie really needs to reconsider going into the mental health field with the obvious shortage of practitioners) and I told her that my heart rate has increasingly been on the high side for several weeks. ¬†We took a look at my Fitbit HR tracking graphs and there was indeed a steady upward trend beginning on October 19th when¬†I had started one of my anti-depressants (nortriptyline) and continuing on to the day in question.¬† We elected to stop that drug and…drumroll please…my resting HR dropped 16 beats per minute over the course of ONE FRIGGIN’ WEEK. ¬†The increased HR could have had an effect on my ventricular ejection rate, as well¬†(basically, my heart was all like, “Hey, I don’t need to pump so hard if I’m pumping more often…” ¬†Lazy bitch!). ¬†When I went in for the repeat echo last Tuesday I squeaked by with a very respectable 51%, so I’m back on the study ūüôā ¬† Fitbit, here to save the day!

Yippee, all that hard work, the run around with insurance and multiple oncologists and nurses, the trips to Milwaukee, worrying about my ticker, it was all working out and now I have another chance at chemo…hip, hip, hooray! ¬†Wait, crap. ¬†CRAP, more chemo…and right before Christmas!?! ¬†I feel like I had been so focused on getting on the study that the idea of more chemo never really and truly sunk in. ¬†I mean, I knew but I didn’t KNOW, you know? ¬†The day after I got the results, it hit me like a frickin’ brick, though. ¬†One of the handful of times I’ve had an honest to goodness panic attack…felt like I was breathing through a straw, heart was beating out of my chest and¬†thoughts racing a mile a minute…luckily it happened while I was walking to yoga class, so the rhythm of putting one foot in front of the other, focusing on regulating my breath, and arriving at my mat helped to calm things down again.

The mental roller coaster has returned over the last few days. ¬†I’m thankful for the opportunity to get directed¬†therapy if they find genetic markers that match my tumor. ¬†That seems worth going through the shit show all over again, and I know there are others out there that don’t have access to the kind of medical care I ‘enjoy’ that would jump at the chance to participate in this study. ¬†Yet my emotions are¬†scattered and the blues are working their way back in slowly but surely. ¬†No doubt in part because I’m not currently taking an anti-depressant after quitting the nortriptyline (she’s off her meds, folks!), but there are other factors. ¬†The holidays are always a little stressful, winter is coming(!) and seeing all the brown where there once was green is disheartening, but I think the biggest factor is that my small window of normalcy is likely closing once again. ¬†I was enjoying a return to day-to-day routines, a schedule (relatively) free of medical appointments, SLEEPING, spending less time worrying about cancer, enjoying hobbies/friends/outings (and the occasional beer…yaaaassss!), wanting to cook healthy meals again, feeling stable and content for long stretches of time. ¬†And the dog. ¬†I was ready. ¬†Thought it was finally time. ¬†I was *this* close. ¬†Now things are up in the air again. ¬†Feeling like I cannot take on that responsibility right now, wouldn’t be fair to me or the pooch¬†when there’s more uncertainty on the horizon. ¬†And for this, the tears have come again and again over the last couple of days. ¬†I feel like being ready for a canine companion¬†is the¬†final measure of being able to¬†return to a ‘normal’ life. ¬†The dog days will come, I know, but not today, even though I want so very much to be ready… ¬†Until then, I guess I’ll be grateful for the other regular snugglers on my couch, human and feline ūüėČ

If you’ve actually read through¬†to the end of this post, I’m extra thankful for you¬†‚̧

-JEB

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I’m back, bitches!

I have a (rather long) blog post started about my trip to the ‘midsouth’ (VA and NC‚Ķit‚Äôs not the deep south, and ‘mideast’ is already taken, so…), but I wanted to send out a quick update.

We met with the oncologist, Dr. Chitambar, at Froedtert Hospital in Milwaukee this past Thursday and it went well. ¬†He¬†seems very focused on treating the whole patient, as opposed to just the cancer, which is a breath of fresh air.¬†¬† There are still some insurance coverage details to work out with GHC, but it’s looking positive. ¬† Tissue from my tumor¬†will¬†be genotyped to¬†find out¬†if there’s a match to one of the drugs on the study, and we should find out in the coming weeks. ¬† For anyone wanting more specifics about the study, you can find them here: https://clinicaltrials.gov/ct2/show/NCT02101385?term=NCT02101385&rank=1

Even better news, though, is the lifting of my spirits. ¬†Just¬†as¬†I can pinpoint the day the depression and anxiety took hold of me, the release was just as pronounced. ¬†I was sitting at my desk at work this past Tuesday afternoon when I realized that I had not had anxious thoughts or feelings of depression for some time,¬†a couple¬†hours at least. ¬†I felt…normal. ¬†For the first time in months, it was as though a demon had been exorcised and I was me again. ¬†I cried in that moment, and have several times since,¬†out of pure joy. ¬†Even the election results did not drag me back down into the pit of despair‚Ķand if I can remain happy and optimistic through that, well, I CAN DO ANYTHING!

OK, that’s it for now, more later.

-JEB

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pity partay

Depression¬†feels like drowning. ¬†Like I’m floating in the ocean with an anchor attached to my leg at all times. ¬†Every morning starts out at high tide, my body¬†submerged with just¬†my nose and mouth above water. ¬†I feel like I can’t move or I’ll drown. ¬†I don’t have the urge to cry, which I find strange (maybe worried that it will only add to the water that already surrounds me, but at the same time it would make me lighter and more buoyant…what are the physics behind this analogy?). ¬†I always figured depression manifested itself as the¬†ultimate in sadness, but that’s not always the case. ¬†A¬†lot of¬†days start out in an¬†emotional¬†vacuum. ¬†It’s like an empty pit. ¬†Anxiety is different, that’s like a roller coaster of emotions…but the depression, sometimes, it’s like I want to experience the feelings but they are just out of reach. ¬†I know I have to get up, drag¬†that anchor¬†with what little energy I have, that the only way I’ll feel better is if I can get up and experience the normalcy of some daily activity. ¬†Usually it’s the anxiety kicking in that eventually gets my butt out of bed, so I guess there’s a silver lining…it gives me purpose, even if that’s through a rush of overwhelming thoughts about tasks to be completed¬†and decisions to be made. ¬†And so I will crawl out of bed, hit the bathroom, make some tea (in the kitchen, not the bathroom)…by now I’m feeling a little better…force myself to eat (or at least take my daily supplements), make lunch(es)…moving past total suckitude and seeing a little light…get dressed, brush my teeth, run my fingers through all that glorious hair…at this point I’m looking forward to a latte…grab my various bags (purse, work, yoga), and head out the door. ¬†Success! ¬†Normally the tide continues¬†to gradually recede, though waves still rock me throughout the day, but by evening I’m usually standing solidly with my feet on a beach of wet sand, anchor in hand. ¬†The tide comes in again overnight and the process repeats.

That’s most days. ¬†But yesterday¬†morning, I cried. ¬†Hard. ¬†Possibly harder than I have in years. ¬†I totally and completely lost my shit. ¬†All of the everything just welled up and came out in tears and sobs and snot. ¬†For, like, several hours. ¬†I cried because I only got four hours of sleep for the umpteenth night in a row and was exhausted, I cried for the boob that I lost and the boob that I will lose in the future. ¬†I cried over my marriage. ¬†I cried because I feel like I’m not pulling my weight at work and because I’m terrified that I’m going to forget something because my¬†brain still has trouble concentrating and focusing. ¬†I cried because Donald Drumpf. ¬†I cried over my feelings of selfishness throughout this whole cancer ordeal, and because I feel like I’m not being the mom that Maggie deserves (and I cry even harder that she has to go through this shit at all, and hope that she knows she’s the most important person in the world to me but that she doesn’t feel the pressure of holding me up). ¬†I cried because boot season makes my feet stink 24/7. ¬†I cried over the hacking, dry cough I’ve had for going on seven weeks and I cried because all the crying was giving me a migraine. ¬†I cried because I can’t deal with even mildly sad/scary/dark/’feely’ books and movies anymore because I have a physical reaction that makes me feel sick to my stomach, and I miss the experience of curling up on the couch with a good tear-jerker for *gasp* FUN. ¬†I cried because I miss the old Jenn, so very much. ¬†I cried because I was aware that I was¬†utterly alone¬†in that moment, with the covers pulled over my head and my body tucked up into¬†a fetal position…but¬†even in a crowded room I can manage to feel lonely. ¬†I cried because Leo’s poop stinks and, despite ten straight minutes of scratching at the side of the litterbox, his turds remain uncovered and the stench permeates the room. ¬†I cried because my future is uncertain and I often feel like I’m on a train where cancer is the engineer and I’m just along for the ride. ¬†I cried because I felt helpless and out of control. ¬†¬†I cried because my ‘to do’ list is long and overwhelming, yet mostly full of¬†basic necessities, and so I cried because I can no longer juggle all the things I once could. ¬†I cried because I am scared about the possibility of another round of¬†chemo, and I cried at the thought of NOT doing any more chemo and playing the horrible waiting game between scans. ¬†I cried because I sometimes get upset with¬†people complaining about the wonderfully mundane¬†stuff going on in their life, but recognize it’s jealousy over the desire to have only comparatively simple problems again. ¬†I cried because I was getting tears all over my pillow and now it was wet, dammit! ¬†I cried because I felt like an emotional teenager all over again and I’m AN ADULT NOW for crying out loud (pun intended)! ¬†There’s plenty more, but I think you get the picture…daaaaang, what a pity party I held for myself!

The day got better, but I never completely got out of my funk. ¬†What relief I got was due to Angie’s words of wisdom (girl, you are a shining light in my life¬†and I am so thankful to have you by my side to push¬†through the darkness); Maggie’s presence as a reminder that I did something right in raising a funny, intelligent, goofy, beautiful, amazing young woman and because her smile and laughter can always lift my spirits; getting out in nature with Julie and the girls; snuggle time with baby¬†Milo (wrastling with Ralphie didn’t hurt ūüėČ ), and , of course, yoga. ¬†Gratitude going out in big heaps ‚̧ ‚̧ ‚̧

This morning I’m feeling better still, maybe it’s because I got a full four and a half(!) hours of sleep…something really needs to change on the insomnia front ūüė¶ ¬†But I can look through my ‘cry list’ and see what is reasonable, where I need to cut myself some slack, identify those things that are out of my control and are undeserving of obsession, and can even laugh at the ridiculousness of a couple of¬†the points. ¬†I am glad¬†I got to have that cry, because it had been a while since the feels really got a chance to step¬†out and go for a walk. ¬†Hoping that yesterday was a¬†much needed release and now I can get back to ‘normal’, whatever that might be right now…

Love and hugs and kisses (being sent out and open to receiving ūüėČ ),

-JEB

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treatment trifecta complete

Once again, I find myself remiss in updating the jebooblog. ¬†Probably a good thing, because it means not much is happening on the cancer front ūüėČ

So, the big thing I guess is that rads are DONE! ¬†Finished up on 9/9. ¬†Rads were by far preferable to chemo, but still unfun. ¬†Since the side effects were cumulative, though, it meant that there were only a couple weeks where things got real. ¬†My skin got good and red/raw, there was (and continues to be) peeling, but only came close to blistering in one small area under my arm, and that was minor. ¬† I continued to slather on all manner of ointments (calendula in beeswax, Bio-oil, and Aquaphor) several times a day. ¬†The pain wasn’t all that bad and really only became unbearable when I was practicing yoga (all that friction from flowing…). ¬†I asked my rad onc if there was any topical anesthetic she could prescribe just for yoga time (wasn’t about to give up the only thing keeping me sane right now, plus it was helping to keep the damaged muscle/skin stretched and supple), but when I went to pick it up the pharmacist said the manufacturer no longer made it ūüė¶ ¬†However, he said, there is an over the counter product that is essentially the same thing. ¬†Imagine my surprise when he walked me down the hemorrhoid aisle. ¬†But, hey, 5% lidocaine is 5% lidocaine…before each yoga class I religiously applied the ano-rectal cream (do they really need both the anal AND the rectal represented?) and it worked like a charm.

After a while it became¬†uncomfortable to wear my prosthetic, both against the skin and the added pressure on the underlying muscle, so I switched back to the lighter kitted knocker. ¬†And when wearing a bra became¬†unbearable, I just stopped wearing any support at all. ¬†And when the ointment was¬†ruining¬†my shirts, I said to heck with upper body covering altogether…at first just in the evenings (only a couple awkward moments where I had to rush to put on clothes when someone came to the door) and then eventually during the day¬†(topless teleworking, anyone?). ¬†Happy to say now that the skin is just about back to normal and the muscle is getting there. ¬†I can really tell if I don’t do yoga every day because the muscle gets tight and¬†painful, but range of motion is on par with my right side once I’m warmed up. ¬†Last week concluded occupational therapy for the time being, because she says I’m doing THAT AWESOME. ¬†The cording is almost gone, thanks in large part to the cupping (seriously, everyone should own a set of these!).

The fatigue from rads was worse than the other side effects, and similar to that experienced while undergoing chemo…bone tired 24/7 with no real relief ūüė¶ ¬†The last week of treatment and the following week or so were rough going.¬† I had been getting some more routine to my sleep schedule in the weeks following surgery, but the radiation-induced fatigue threw it all out of whack again. ¬†From what I’m learning,¬†the ongoing insomnia is¬†playing a big role in the worsening depression/anxiety. ¬†Still working on finding balance there…diet/exercise,¬†the right concoction of meds, therapy. ¬†Dreaming of it for months, I thought getting back to normalcy would be a much smoother transition‚Ķ¬† It’s not an easy road right now in the mental health department, but I am determined to¬†be well¬†again!!! ¬† I can feel that I’m walking the path to recovery, there are just a few more twists and turns than I expected. ¬†Thanks for the well wishes, hugs (virtual and actual), and all manner of support people are sending my way.¬† It makes a HUGE difference to know that so many great folks care about little ol‚Äô me ‚̧¬† ¬†Feeling blessed to have such great family and friends to help stave off the loneliness‚Ķit‚Äôs been a busy few weeks with fun, social engagements to raise my spirits – One Flesh, Dam Challenge, and a visit from a very dear friend this coming weekend (sooooooo excited, A&J!!!). ¬† Bottom line…don’t be a stranger, ya hear?

My hair continues to grow, so much so that I really think it‚Äôs time to trim up the back and it might even look like I have this haircut on purpose!¬† We were out at Uncle Bob‚Äôs farm a couple weeks ago and I was standing by the hives (like, 15 feet away), just observing their busybeeness.¬† I felt one land on my head and remained still figuring she would find nothing of interest and move on.¬† But no, she got tangled in my cowlick, panicked, and stung me. ¬†Silver lining is that my hair was long and thick enough to trap a bee(!), and that‚Äôs what I would think about over the next few hours as the site swelled and produced a good and tender lump…woohoo!

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You may catch more flies with honey, but my massively thick crop of hair will trap the bees… ¬†Patent pending.

Still waiting to hear back out the clinical trial and insurance coverage, though it looks promising that GHC will cover the treatment through Froedtert as an out of network provider.  The big question will be whether or not they identify any genetic markers in my tumor that match up with the 14 or so chemo drugs that are part of the trial.  So, continual waiting game.  I did put my foot down about getting in an honest-to-goodness vacation in the time between ending rads and beginning a new treatment.  Going to head out to Richmond to see family (are you ready for me?!?), followed by a few days driving along the coast and staying in airbnbs before heading inland to Charlotte for a conference.  And upon my return, I head straight into a Brunner Girl weekend Up North.  I am both excited and nervous to travel, the old me (pre shit show Jenn) would not think twice about renting a car and driving around parts unknown all by her lonesome.  In fact, she would relish in the delight of the solo adventure.  My newfound (or, at least, extremely heightened) anxiety, as well as a growing aversion to being alone, are both rearing their ugly head at the prospect, however.  And yet, I’m determined to have a good time, and battling to rediscover and take back a little bit of the old Jenn by going on this trip.  I CAN DO THIS!

Peace and love,

-JEB

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the gift of yoga as medicine

If there has been one life boat keeping me afloat during this shit storm, it would be yoga. ¬†Through it all – chemo, surgery, radiation, occupational therapy, psychological therapy…yoga has been a constant companion. ¬†It heals what ails me, physically and mentally, a little (or a lot!) each time I¬†practice. ¬†On the crappiest of crap-filled days, I am able to find¬†solace on my mat. ¬†For one hour, or more, each day I find peace from the demons that plague me. ¬†I am present in body and mind. ¬†Yoga allows me to forget my off-mat troubles and focus on the task at hand. ¬†Breath and asana. ¬†Rinse, repeat. ¬†My brain relaxes and lets go of worry, anxiety, fear, sadness, everything but the breath and the pose. ¬†I am THERE. ¬†I strive to make the most of each second, to be the best I can be for that one moment in time, until¬†it passes and the next moment is there, and so it goes. ¬†It forces me to be naked – no wigs or hats, no padded bra. ¬†There I am for the world to see – a bald, one boobed yogini (and with the other one a double D, there ain’t no hiding it!). ¬†But it feels natural in the studio, it feels like home, it feels amazing¬†to practice so exposed¬†(now, I would put on a hat and slip in my knitted knocker on the way out the door, mind you…I always wondered what people thought when they saw my pink falsey on the shelf!).

Now I have more hair on my head and a prosthesis I can wear during my practice so I feel more ‘normal’. ¬†The short(!) hair gets less attention and, although not level with the ‘au natural’ lady on the right, the new fake boob is passable. ¬†The first time I wore it I didn’t think I would need one of the special bras with the interior pocket to slide it in…I figured that my normal compression sports bra would work to keep her from traveling. ¬†Nope. ¬†A few down dogs and that thing was creeping halfway up my neck…lesson learned! ¬†I had also finally gotten used to balancing poses without the additional 2.5 lbs. on the left side, and now my body has to work hard to remember what more equal weight feels like. ¬†And then when I have the mastectomy on the right side, then expanders and implants, it will have to learn things anew again and again. ¬†Forever changing, always a challenge!

I’ve¬†been a member at three different studios in the last 9 months, each with a different vibe and purpose for where I was at during that particular time.¬†¬†For most of 2015 I was a member at Dragonfly, a group of several¬†heated studios with a youthful energy and exuberance (and lavender scented chilled towels at the end of class that were the BEST!). ¬†When I first joined it felt great to get back into the flow practice I had to give up when I was having hip issues (had surgery in 2013 and it took a good 18 months to feel I was back in flow condition).¬† During the diagnostic phase of this shit show I fell off the wagon a little bit, as Dragonfly became too fast paced and intense for what I was feeling emotionally and physically capable of doing. ¬†I switched back to my previous studio, Inner Fire, and was able to do hot (Bikram) yoga several weeks into my chemo treatment before the neuropathy made it too challenging¬†(55 minutes in the balancing series without being able to really feel your feet made for an interesting practice!). ¬†Surprisingly, the 105 degree room didn’t affect me as much as I would have thought…at least it didn’t add to the nausea ūüôā ¬†When I could no longer practice Bikram I switched to an almost exclusively yin practice at Inner Fire¬†and also started going to Bliss Flow so that I could do yin 6 days a week, and this¬†carried me through the roughest patch of¬†chemo. ¬†Post mastectomy I quickly found my way back into gentle and supportive yoga at Bliss Flow, and am now regularly practicing low to moderate intensity flow there (looking forward to some power flow in my future!). ¬† I’ll make my way back to Bikram at some point, probably (I might have to…the hip that had the labral tear is acting up again, which makes warrior and similar poses difficult, and the whole reason I had to give up flow and try Bikram in the first place…).

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Sweating through a Bikram class, back in the day…my hair will be that long in no time! Can you find me?

OK, off my yoga soap box and on to updates!¬† Radiation continues‚Ķbut only four more sessions!¬† My underarm area is pretty ouchy at this point, but not yet blistering. ¬†Constant application of salves, oils, and creams, plus keeping it moist using Elasti-gel (agar like gel on one side and cloth on the other) definitely helps, then taking¬†some ibuprofen for the pain when it gets particularly¬†angry. ¬†Imagine a sunburn that goes an inch deep, the outer skin is raw and painful (it almost feels like if I press too hard several layers of skin would slough off…) and the muscle below tight with limited range of motion.¬† Hopefully the three day weekend will give my skin a nice break and the remaining treatments this coming week make it only nominally worse.¬† The fatigue is the worst part‚ĶI feel physically and emotionally spent much of the time.¬† Sleeping ok at night for the most part (still an early riser, just feel stupid groggy for 4-5 hours after waking), but can‚Äôt seem to nap during the day no matter how exhausted I feel.¬† It‚Äôs a bit too reminiscent of the bone-tired feeling I had during chemo ūüė¶

Met with the research nurse and oncologist at Froedtert last week.¬† My participation in the study still hinges on the insurance approving the necessity of being treated out of my service area, but the preliminary discussions went well.¬† Sounds like even if I‚Äôm not matched by genotype to one of the 14 potential drugs currently identified by the clinical trial, the default chemo option is Xeloda.¬† It‚Äôs an oral med that is taken twice daily for one, two, or three weeks, followed by one week off. ¬†It’s usually prescribed as a treatment for Stage IV cancers as a kind of last resort, but has proven to be effective with triple negative breast cancer. ¬†It doesn‚Äôt sound as nasty as the red devil or some of the other chemo drugs I was on, and not having to go into the hospital for IV administration is a bonus, but there are still side effects.¬† The biggest ones are fatigue, diarrhea, nausea, and hand/foot syndrome (irritation, redness, peeling of the skin of the palms and soles). ¬†No hair loss, though ūüėČ ¬†Still, not sure if I‚Äôm ready for all that so soon after finishing all the other treatments (especially the hand/foot syndrome, which will undoubtedly interfere with yoga, one of the few things keeping me sane at the moment‚Ķ).¬† Was looking forward to some normalcy, and a break from the fatigue in particular, so we‚Äôll see how things shake out.¬† If I did participate in the clinical trial, I would have to start chemo within 10 days of the review board making the decision to accept me.

As for my mental health, it certainly received a boost from the outpouring of support following the last blog ‚Äď thanks so much all you AMAZING PEOPLE!¬† ¬†My mood continues to go up and down, up and down, but I think that the ups are gradually gaining ground.¬† Still struggling to keep my head above water¬†most days, and the mornings remain ever so stubbornly gloomy, but am hopeful the tides are turning.¬† The fatigue will gradually let up once the radiation is finished (usually takes a couple weeks to see improvement, but an end in sight!).¬† ¬†Also trying a new anti-depressant today, so fingers crossed it‚Äôs more effective.¬† Moving from mirtazapine, which had the added benefit of being a sleep aid (but the drawback of making me crave sugar 24/7…I’ve gained back all the weight I lost during chemo) to citalopram, which may make me drowsy or keep me awake (sounds like it‚Äôs a crap shoot from what I read/hear).¬† One thing the testimonials do agree on – the first week or so is rough going and anxiety/depression is heightened before coming back down to ‚Äėnormal‚Äô and then improving.¬† So,¬† it‚Äôs the last week of radiation and the first week of trying a new drug‚Ķlots of hope for healing in the not-too-distant future, but this coming week is likely going to be a doozy ūüė¶ ¬†I‚Äôll be needing¬†all the virtual and actual hugs, thoughts, and well wishes you can send!

(Right after I finished writing this I read a blog post from a fellow MpBC survivor that I follow. ¬†Every time I am feeling sorry for myself, I am reminded that it could be worse…several months after being diagnosed with cancer, her husband was murdered. ¬†She has an amazing spirit and desire¬†to always live with joy in her heart. ¬†I recommend reading any/all of her posts, but the one from today pretty much sums up that need for hugs ūüėČ – http://lokitacarter.com/2016/09/05/oh-to-be-held/ )

-JEB

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totally rad update

19 out of 28 radiation treatments under my belt. ¬†So far, pretty good. ¬†I¬†go in daily on weekdays and then get the weekend off…just when things start normalizing they zap me again on Monday. ¬†Skin looks and feels sunburned, but so far no peeling or blisters. ¬†Rad doc seems to be happy my skin isn’t worse, so I guess that’s something…? ¬†The¬†muscles of the chest being radiated are tight and sore, but yoga is really helping with that. ¬†The effects of radiation are cumulative, so it will get worse before it gets better, but there is a light at the end of the tunnel!

Surgery scar is healing well, or so I’m told, and I still have some stubborn residual cording (scar tissues from the lymph system that stretches like fish line from my underarm all the way out to my wrist). ¬†It’s ouchy and annoying, but not debilitating. ¬†I work with an Occupational Therapist once a week and I really like her (I mean, if Emily Nowakoswki isn’t available to drive up from Richmond once a week, I’ve got the next best thing!). ¬†We have been using a cupping technique the last couple of weeks¬†(it’s ALL the rage these days, you know!). ¬†Mine are silicone instead of glass and use flexible suction rather than heat to massage and help blood/lymph flow, but¬†it’s still pretty amazing. ¬†I like being able to dig in there and really feel like I’m doing something to the cords.

During an appointment with my oncologist a few weeks ago, she indicated the possibility of going on another clinical trial involving targeted chemotherapy. ¬†Wait, what now?!? ¬†Well, because the tumor grew instead of shrinking during chemo, and there was a significant portion still active (about 80%) at removal, plus¬†a few cells were still hanging out in that one lymph node, she’d like to try a study that would involve ‘next gen sequencing’ to see if there is a drug out there that has been identified as being effective against certain genotypes of triple negative breast cancer. ¬†Yeah, I didn’t want to hear about more chemo options having just finished that Hellish part of my life, but if there is a drug out there that they are relatively sure will work on my particular cancer cells and get rid of them FO SHO FO SHO, then I’m willing to try. ¬†Still working out some of the insurance logistics since the study and treatment would be through the Medical College of Wisconsin at Froedtert Hospital in Milwaukee and my HMO doesn’t reach that far into the great East (seriously, you’d think I was asking them to treat me in China…). ¬†The study grant pays for the initial screening to determine if I’m eligible (genotyping, EKG, some other bloodwork) and drug itself, but administration of the drug, doctor visits, and supportive care (i.e. more drugs) is considered standard care as if I was getting any other chemo and my health insurance provider is on the hook for it. ¬†Authorization paperwork is flying back and forth between my docs and the HMO and we’ll see how it all shakes out. ¬†Really, as far as health insurance providers go, GHC has been really awesome thus far throughout my diagnosis and treatment (a few hiccups along the way, but generally due to administrative hangups at the hospital and not on the insurance end), so I consider myself lucky all in all.

As for my mental health, well, that’s seen much better days. ¬†This cancer journey has¬†been an emotional roller coaster, as to be expected, with¬†normal ups and downs. ¬†Then I hit a definite wall a few weeks back. ¬†I can pinpoint the day, Sunday Aug 7, that I woke up in a funk and have not been able to shake it since… ¬†Not sure exactly why, probably lots of reasons both physical and emotional, but my brain decided I needed one more thing on my plate to overcome. ¬†My therapist says I’m having a ‘major depressive episode’. ¬†Ya, I’d say! ¬†I was doing all the right things to stave off depression – practicing yoga daily, talking to folks at Gilda’s Club, taking an anti-depressant/anti-anxiety/sleep aid, seeing a therapist, meditating, working, socializing, eating (relatively) healthy, walking and getting out in nature…having FUN and enjoying life! ¬†And still the depression came for me.¬† I would describe it as a deep, dark abyss that swallows¬†all the joy and laughter and happiness you throw at it. ¬†GULP! ¬†Getting a grip on my mental health¬†has been much harder to deal with than any physical illness or trauma this cancer diagnosis and treatment has thrown my way. ¬† Adulting has become HARD. ¬†Chores, work, even hobbies all feel overwhelming. ¬†Getting out of bed in¬†the morning¬†and facing the day is HARD (sometimes it takes multiple attempts – get up, get back in, get up, get back in, GET UP DAMN IT!). ¬†And I used to love mornings…now I dread going to sleep at night because I know I will wake up to crushing sadness and anxiety. ¬†Thankfully my mood¬†usually improves¬†throughout the day, but the depression is always there in the shadows, waiting… ¬†I’ve never felt so weak, so alone (even in a group of people!), so utterly helpless. ¬†There is no amount of positive thinking that will make me¬†‘snap out of it’ (believe me, I’ve tried!). ¬†It’s a struggle every. damn. second. every. damn. day. ¬†I have to push myself constantly to do normal¬†things we all take for granted and, in that way I suppose, I have never felt stronger. ¬†I¬†had no idea the¬†courage needed to take on depression and while I’m certain I’ll come out victorious, the here and now, well, it hurts ūüė•

Dang,¬†that was depressing ūüėČ ¬†Let’s have¬†some good news…drumroll, please…look at all that freakin’ hair, guys! ¬†The photo on the left is when I buzzed it back in February and the photo on the right is from yesterday (and it’s growing as I type, I’ll need to update soon!). ¬†Eyebrows are there, but much lighter…same for the eyelashes. ¬†Progress, anyway!

It’s a bit hard for me to see these two photos side by side (and not just because the perfectionist in me could not get my mouth to make that same shape¬†no matter how hard I¬†tried…). ¬† I see things in the depths of those eyes that others don’t. ¬†I see the raw¬†optimism of the gal on the left, the fighting spirit of an innocent, and I mourn the loss deeply. ¬†On the right, I see the physical and mental struggles, the pain, the depression and anxiety, a body and mind that will never be the same, changed forever in the span of a few short months. ¬†The woman on the right is one who has seen some harsh shit – but lived to tell. ¬†I see a warrior (with the scars to prove it!). ¬†Broken, but putting the pieces back together to make a new whole. ¬†Slowly, sloooooowly, but surely.

-JEB

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