Warning: no sunshine and unicorns here

I kept meaning to write a post about my experiences with the first few rounds of DAT (at least you’re spared those gory details…in brief: not pretty), while at the same time wanting to keep some distance from yet another thing that reminds me of how much cancer has taken over my life.  But, as it turns out, the scans indicate it was all for nothing anyway…the existing tumors are progressing and there are a few new ones.  There is a possibility that because my cancer is so aggressive that it could be reacting more slowly to the treatment than other types of breast cancer might (but that’s mostly wishful thinking on our part, it’s not coming from the oncologist), so we’re going to try one more round, but it’s a shot in the dark.  Basically, we’re pretty much out of options at this point.  There might be another clinical trial I qualify for either here in Madison or elsewhere, but I’ve been through two unsuccessful experimental treatments already and I’m not sure my body (or soul) can go through yet another one, especially when the chances of it working are remote.

So, that’s where it stands.  The news is still washing over me.  The hardest to deal with is not the anger or sadness, but the numbness in between.  It is an empty and hollow space, frighteningly devoid of all feelings. I do not hunger, I do not want, and it is scary.  The other side of the vacuum is an intense and raw place where all my physical and mental senses seem to be heightened.  There, I am all emotions.  Yet another roller coaster ride courtesy of cancer.

I want to thank all the folks that have been so helpful with meal drops, chores, cleaning, errands and Boo care.  It means so much to have fewer things to worry about around the house.  If you are looking to help, the Lotsa Helping Hands website has plenty of openings (after being full up in previous weeks…thanks, folks!): https://my.lotsahelpinghands.com/community/jeboobuddies  We are pretty good with food (we have a local meal pick up service for at least three meals a week, plus my diet is very restricted and my appetite decreased so it’s difficult to prepare food for me), but if you want to bring some goodies for Kevin and Maggie they would surely appreciate it.  Mostly, though, we could really use folks signing up to walk Boo in the mornings.  My hips/legs generally don’t allow me to walk without pain until meds kick in around 10a, or so, which means I can’t walk him.  Kevin is usually busy waiting on me in the morning 🙂 , so it would mean one less thing for him to have to add to his already full plate.  P.S. if you see him, give him a hug, because this caretaking thing ain’t for the faint of heart…he waits on me hand and foot (when I allow him to), makes the meals, washes the clothes, does the dishes, takes out the trash, does the grocery shopping, acts as my chauffeur, runs the errands, walks the dog, takes care of the outside chores, and somehow fits work into the mix (along with some volleyball 🙂 ).

Hoping that I can snap out of this current funk soon.  I’m trying, but the weight of it all is crushing down on me at the moment.  Maybe I just really need to get the feels out of my system and then can get back to my jovial self.  Keep the thoughts/prayers, cards, jokes, flowers, and visits coming…I need them now more than ever!

Love ya’ll.  XOXOXOX

-JEB

All aboard the chemo train!

Our European vacation was a success!  A good mix of fun and excitement, relaxation and kicking back.  Walking, biking, hiking…good eats and great beach volleyball!  Hoping to enjoy more travel and new sights, both near and far, once I’m feeling better 😀

I’ve spent hours on the phone with Navitus over the last couple weeks, all to no avail.  They are still denying the medication, everolimus, identified by several specialists and genetic sequencing as having the best chance of extending my life.  I’m not going to rehash all the details because it just pisses me off and I’m tired of dealing with the health insurance version of soulless white walkers.  Good news is that GHC pretty much immediately approved my oncologist’s request to receive temsirolimus, the most closely related MTOR inhibitor to everolimus available, it will just be in IV form instead of oral.  So this coming Tuesday I am back in the chemo bay to begin infusions of DAT (Doxil, Avastin, Temsirolimus) every three weeks, but have to go in once a week for the temsirolimus.  It’s none too soon for me, as the tumors continue to grow unabated (in addition to my spine and hips, new ones now in my ribs, skull, and femur…plus I’ve palpated a couple new lumps on the left side of my chest, which I suspect are local recurrences from the primary tumor, so even more cancer fun!), which is causing significant pain.  I have been taking ibuprofen every morning along with a low dose of twice daily extended release oxycodone, which together definitely take the edge off, but it still takes me a couple hours each morning to feel human enough to ambulate and get out of the house.  Bah, stoopid cancer!

We are settling back into Segoe living and have most of the boxes unpacked!  Still a ways to go with projects and organizing, plus there’s a full storage unit to be cleared out, but we’re chipping away a bit each day (thanks to Brunner girls for helping out so much on this front!!!).  I have been quilting again, which feels great…like hanging out with an old friend you haven’t seen for a while but everything just falls into place when you greet each other again ❤  I make sure to find a little time every day to spend with my sewing machine and it feels sooooo good!

I’ve also posted some new entries in the Lotsa Helping Hands calendar (http://lotsahelpinghands.com, group name is jeboobuddies), in case anyone is looking for some extra chores in their life 😉

Love and peace,

JEB

Stoooopid cancer

The last month has been a roller coaster.  Blech!

I started on the androgen receptor clinical trial with bicalutimide and ribociclib on 6/16.  There were minimal side effects, but I was continuing to have pain in my back, hips, and groin.  More appointments, more scans, and, as it turns out, more cancer…in my bones – vertebrae and pelvis.  Well, at least there was an explanation for the debilitating pain I’ve been experiencing increasingly over the past few months, but not news we wanted.  Still, I remained optimistic that the study drugs would help.

But the scan from last Monday showed overall progression in both the liver and bones.  The chemo did not work to shrink the tumors, not even to slow the bastards down.  It was not an easy pill to swallow.  This chemo wasn’t the absolute last resort, but devastating news all the same.  Plus, when there was the possibility that the treatment was working and I had that hope to cling to, the chronic pain was difficult but bearable.  Once it became clear that the pain was a result of increased tumor burden, it was like a switch.   Knowing that you are dying and FEELING like you are dying are very different things.  My old companions Insomnia, Depression, and Anxiety were most definitely rearing their ugly mugs again.  Boo, cancer, BOOOOOOOOOO ON YOU!

Our Plan B was to try a regimen called DAE (Doxil, Avastin, Everolimus) that has shown a lot of promise in treating metaplastic breast cancer.  The individual drugs are FDA approved, but not to use together for my type of cancer (triple negative).  My onc had to get internal approval through the hospital just to consider using the combo.  Much of the research behind it is based on the mutations in my tumor cells that allow them to grow fast and furious, so these drugs stop the insanity of rapidly dividing bastard cells.  Both the gene sequencing done by Foundation One and review by the UW Molecular Tumor Review Board recommend everolimus specifically.  And now insurance refuse to authorize everolimus saying that I need to try and fail with other drugs (that have, like, zero chance of affecting my particular cancer) before they would approve it.  This is Navitus, not GHC, being dick bags.  So, my onc sent back a very ‘dramatically worded’ appeal with lots of evidence from medical professionals who know what the fuck they are talking about, so hopefully they will listen to reason and take their heads out their asses so that I can, you know, stay ALIVE.  Who knows how long that will take…

In the meantime, we headed to MD Anderson in Houston to get the second opinion from an oncologist that specializes in metaplastic carcinoma (I’m in a kitschy little hotel bar having a cocktail right now…).  Wouldn’t you know it, she suggests DAE as the frontline treatment.  She had a couple suggestions that have worked for other patients in order to get the everolimus, including appealing to the pharma manufacturer to get free/reduced access or switching to an IV (over oral) version of the drug.  We’ll keep on keeping up the fight.  As grateful as I feel for the amazing access I have to a research hospital, and decent insurance, I am reminded over and over that our healthcare system is straight up bullshit.

We decided somewhat last minute (last week) that we were going to say to heck with it ALL and go to Vienna for a summer vacation starting this coming Saturday, July 22 and returning Friday, August 4.  I KNOW, right?  How exciting!  We’re going to see Theo kick some ass in the World Championship beach volleyball tournament there, and wind our way around Austria, Germany, Hungary, and maybe some other places with old buildings and scenic vistas…  I haven’t had a German class in 20 years, but it’s slowly coming back, and I think the immersion will be fun.  Kevin knows a little, too, and Maggie can take care of any conversations that need to take place in Spanish…so, we’re good!

That’s the update for now.  We continue to appreciate all the support we receive in all the ways it is offered.  Thanks for being awesome folks, folks!

Drinking a cocktail with turmeric, to fight cancer!

-JEB

Buying time

A whole lot of nothing seemed to be happening on the treatment front for a couple weeks after the most recent mets re-diagnosis (much to my frustration/chagrin/wanna flip a table over and scream at the medical community kind of disappointment…), but as of the last few days we are back in business and cashing appointment checks left and right.  Long story short (those of you with itty bitty attention spans can stop after this sentence), I have a busy week coming up and chemo likely to begin locally Thursday or Friday of this week (read on if you care enough to find out what kind of treatment and other details related to extending my life…I’m not judging, I swear, you got the Cliff’s Notes version and that might be all you want).

Had a dickens of a time getting in with a specialist at MD Anderson Cancer Center (MDACC) in Houston, mostly on the admin side of things because their system of onboarding is straight up ridonculous.  I ended up getting an appointment with the Doogie Howser of breast cancer oncologists (which, you know, is fine for your average run of the mill kind of primary boob tumor, but not my metaplastic liver mets, no siree!).   I had heard about a treatment plan for metaplastic breast cancer (MpBC) called DAE (liposomal doxorubicin (Doxil), Avastin (bevacizumab), and everolimus (Afinitor)…yes it gets so unfuckingnecessarily confusing when they use trade names and generic names inconsistently and interchangeably!) and MDACC was the home base for the studies, so I wanted to get a consultation with one of their specialists to learn more and get additional ammo in order to get approval to go off-label for the treatment using these drugs (all FDA approved, but not necesarilly for breast cancer…).  Doogie wasn’t going to do that for me, but at the time it’s all I had 😦

Then we met with my oncologist and research staff last week to discuss the androgen receptor (AR) clinical trial.  To revisit, I have triple negative breast cancer (TNBC), meaning that my tumor cells do not have receptors for estrogen, progesterone, or herceptin.  This is significant in that there are several medicinal therapies out there that block these receptors and can therefore ‘starve’ the tumor(s).  Those drugs are not available to me because I don’t have the receptors 😦  Well, androgen receptors feed off testosterone instead of the more feminine hormones listed above, and I’m 60% positive (meaning 60 out of 100 cells tests positive…apparently off the charts compared to anything they’ve seen…most ladies that test positive are closer to like 10%….so, my uniqueness continues but potentially in a good way this time!).   I’ll be undergoing an oral chemo regimen that is typically given to prostate cancer patients (I don’t suppose it surprises anyone that I’m driven by testosterone…?!?), plus a potential ‘helper’ drug (that’s the clinical trial part…if you want more info, find it here: https://clinicaltrials.gov/ct2/show/NCT03090165?term=TNBC+AR&rank=5).  AR therapy is apparently all the rage in the world of TNBC right now, and my high percentage of receptor-positive cells bodes will in terms of potential response to treatment.  So, we’re going to try it for one treatment cycle (28 days) and re-evaluate at that time.  I cancelled my appointment with Doogie and now have one with one of the legit MpBC specialists a few days after my last AR treatment, when we’ll hopefully have had a scan to let us know it’s working to slow tumor progression and I won’t even need the appointment (fingers crossed, folks, fingers crossed…all of them…DO IT NOW!).

This chemo is different in that it’s oral, but there are still side effects and they will be constant (cumulative, actually) instead of the ups and downs of the IV drugs.  Who knows how I’ll feel, this kind of treatment is all relatively new in women, but I have to imagine it won’t be all sunshine and rainbows (but maybe…unicorns, too!).  I’m also officially vegan these days in order to reduce methionine and casein (cancer feeders found in meat and dairy).  I tell you not in order to lord over you with my supreme veganness, but for those folks aiming to prepare meals into the future.  I could use veggies and fruits, in as many colors as possible (here’s where the rainbows come in!), cut and ready for me to eat.  Raw preferred, plain or in salads, but cooked into other kinds of deliciousness would be greatly appreciated.  Kevin and Maggie are still omnivores and will gratefully accept all sacrificial animal dishes you care to serve 🙂  Moving is also happening, but we don’t have a schedule yet (I know, I KNOW, you want to help…it will happen!).

It’s a lot of info, and I know I’ve bombarded you with lots of acronyms because I’m lazy and don’t want to type out all those long words, but thanks for reading this far.  I love you all and am as always so humbled by your support.  Ya’ll are my rock.  I thank you for reading, for sending positive thoughts and cards and gifts, for hanging out and making me laugh (or allowing me to make YOU laugh…I love to do that!!!).  Thank you, thank you, thank you!

-JEB

This post brought to you by mules.

broken

The good news is that the tumor they radiated responded to treatment.  The bad news is that at least five more popped up in my liver over the last six weeks, some as big as 2cm (that’s really fast and furious, folks…going from 0 to 2 in that span of time is impressive…proving once again that I am the best at growing cancer…not something I’m likely to put on my resume, though).  Unfortunately, it’s fairly devastating news.  I mean, we understood that Stage IV breast cancer was incurable and that this is what would eventually take me out (save getting hit by a bus…why is that always the example?), but some more time between the first round of mets and this one would have been nice.  We were pinning our hopes on years, and this puts us back in the ‘months’ category.  The average lifespan after a mets diagnosis of metaplastic carcinoma is eight months, so we weren’t kidding ourselves by thinking that my diagnosis wasn’t serious, just hopeful that I would be an anomaly…  I still might be, and research and advancements in the field of oncology have come a long way in recent years (i.e. since studies were published throwing out numbers like eight months…), especially with directed therapies based on gene sequencing, so we’re keeping hope alive.

The plan is to move forward with systemic treatment (it’s all that’s left since surgery and radiation are not viable options at this point…), which means some sort of chemo/targeted therapy.  There are a couple promising clinical trials I would have access to here in Madison, and I did finally get authorization for a consult/second opinion at MD Anderson Cancer Center in Houston where there are oncologists that specialize in metaplastic breast cancer, so we’re keeping our fingers crossed that we will hit on something that knocks these tumors back, or at least keeps them stable for as long as possible.

It tends to take me a few days/weeks to fully absorb the reality each time we get bad news (not like Kevin, all the feels hit him straight away…give him a hug if you see him!).  I react initially feeling battle ready, then the sadness and anger settle in, and finally the acceptance that allows for some peace and contentment.  I have been fighting in recent weeks/months to regain a foothold in life outside my cancer diagnosis and was back to feeling happy and alive for the first time in a looooong while.  More like Jenn again…living with cancer, but LIVING.  I was able to accept the things that would likely never come to pass, like growing old and gray with Kevin in retirement or meeting my future grandchild(ren).  Being able to view these eventualities with less emotion and more of an analytical mind has been a difficult process, but also liberating.  Of course with a new diagnosis it seems all the sentiment comes bubbling back…it’s hitting me in fits and starts now (will I get to see Maggie graduate high school?), but will no doubt overwhelm me in the near future and I’ll have myself a little breakdown.  I’ll keep ya’ll posted about the time and date for the big ol’ pity party (bring tequila!).

Bah…the ups and downs, the uncertainty, feeling you have no control…this is cancer.  Like Kevin said, we’re feeling a bit broken right now.  I imagine if you are reading this you feel similarly, and I’m just so sorry we all have to go through this because it’s no damn fun.  The seriousness of my medical condition has hit home for Maggie and she’s feeling pretty out of sorts right now, too (as long as you’re handing out hugs…if you see her, squeeze her!).

But, hey, I’m not dead yet…and that’s no small thing!   Keep on keepin’ on.

This guy says FUCK YOU cancer!

Made it through a whole post without an emoji 😀  Nope.

scan update

So, lots of good news last week (or, now, the week before last since I’ve been dragging my feet on finishing this post…)!  MRI (spine and abdomen) and CT (chest) scans were all clear of any advanced disease…no new lesions, the previous ‘indeterminate’ spot(s) they were worried about are unchanged (and do not look cancerous, perhaps were nothing all along), and the main tumor they hit with radiation is responding.  OMG WHEW WHAT A RELIEF LET’S PARTY!  There is one small area of the tumor that looks as if it could still be potentially viable, but my radiation oncologist is confident it’s just a matter of waiting for the radiation to keep doing its job.  We’ll do another MRI in six weeks to ensure the tumor regression continues.

But then I met with my medical oncologist and, wouldn’t you know it…more good news!  For starters, we’re going to hold off on any systemic treatment minimally until after the next MRI, and possibly longer.  Since there is no active tumor, we all agree that pumping my body full of toxins without knowing if there is anything to treat seems unwarranted.  Plus, I’m not eligible for any clinical trials because I don’t have current measurable disease, so the treatment options are more limited.  A couple weeks ago I brought up the idea of a second opinion with a metaplastic specialist at MD Anderson Cancer Center in Houston, just to cover all the bases and make sure we have access to the most recent info and options, and my onc is encouraging me to pursue that consultation.  Hopefully we can get insurance to cover it (otherwise up to $5k out of pocket for them to review my case and get an office visit, which doesn’t include airfare/lodging/etc.), but the peace of mind it would bring is priceless, whether we do it now or down the road.  Continuing with the good news trend:  no more evidence of that pesky portal vein thrombosis (they are thinking maybe it never was…but I don’t care because no more gd mf-ing abdominal injections!).  No more bruising that made it look like someone was punching me in the gut on a regular basis, no more wasted time icing/injecting/icing twice a day, and I can wear real pants with waistbands without pain (though I was really working the sweat/yoga pant thing…).

So, bigly relief on multiple levels.  Still battling some abdominal discomfort and nausea (to be expected as my liver and surrounding areas recover from rads), back pain (turns out it’s arthritis and a bulging disc that have been causing me issues these past few months, but not abnormal for a person of my age…hmmmppf!), and fatigue (it’s an old friend at this point, the ass dragging…but there are days here and there where I feel that old spring in my step, an ass lift if you will, so I just keep truckin’).  My mental state is far improved over the low point a few months ago, but that dang anxiety seems to be creeping its way back in…that creeper bitch!  Working almost full time, when medical appointments and related dealings allow.  I find my job rewarding on many levels and good to feel as though I’m contributing, but can also be rather stressful, so finding the balance there is an ongoing process.

I continue to be the grateful recipient of many kind words, deeds, and gifts.  I owe lots of thank you cards, email responses, and acknowledgements to folks that have held me/us up throughout all of this and continue to provide much needed support.  I am humbled by your thoughtfulness and generosity, but don’t always have the time/energy to tell you each individually (and it drives me nuts because it makes me feel like I’m being ungrateful…but I want you to know YOU ARE LOVED RIGHT BACK!).   I probably won’t set up the Helping Hands site for help with chores/errands/food until we know more about the next phase of treatment, but could definitely use some help transitioning from Palomino to Segoe over the next couple of months as we make the move back home ❤ ❤ ❤

Oh, and teal happened:

Through the diagnostic spanking machine, darkly

First off, Florida was fabulous!  There was sun, there was fun, there was drinkin’ bein’ done (ok not that much…LAME…#oldfogiespringbreak).  It ended up being a great way to be able to take a step back from the daily grind back home and process the bomb that had just been dropped – the perfect combo of relaxation, distraction, laughter, and tears, wrapped in the safety net of close friends and family.  Hung in West Palm Beach with ma bestie, her hubby, the dancing queen, and my new buddy, ‘Bill’.  A home away from home where I could nestle in and just BE for a few days.  So much ❤ ❤ ❤

The best ladies!

From there it was off to Ft. Lauderdale, where the Brunner clan congregated to watch some amazing beach volleyball (Tay-o Brooney!!!).  We may have also played some cards (500 on the beach!) and somehow managed to survive the inevitable food shortage that occurs at these family gatherings.  So much gratitude, from both me and Kevin, going out to everyone that was there to offer the gift of love and companionship during such a crap-ass time (and, in true Brunner style, not letting me win a single game of Oh Hell even though I was just diagnosed with Stage IV cancer… 🙂 ).

Theo and Casey autographed shirt we brought back for Maggie

While in Fla, I was in contact with my med onc (medical oncologist), health insurance case manager (that woman is da bomb…she called just to check in and see how I was doing after she saw my diagnosis), and no fewer than a dozen scheduling specialists (I don’t know what makes them special…perhaps the inability to answer any relevant questions???).  At any rate, we got all the puzzle pieces put together so that I could hit the ground running with tests and planning appointments the week I got back.  Let the diagnostic spanking machine begin!  I got back Monday night, 2/13.  Tuesday was a bone scan (clear!) and abdominal MRI to further evaluate the liver mets.  Wednesday I had a liver biopsy (surprise, it’s cancer!).  Thursday was a brain MRI (nothing there…tumor wise).  Friday I had an appointment with my insomnia psychologist (a break in the cancer appointments, though not unrelated as the whole not-being-able-to-sleep thing started with chemo last year).  Saturday we were looking forward to a well-deserved break from medical bullshit but ended up in the ER for 9 hours because I was experiencing abdominal pain (more intense than the past few months…turns out they nicked a branch of the portal vein during biopsy so now I have a thrombosis (blood clot) that requires twice daily abdominal injections with an anticoagulant until it breaks up (could be forEVER) and a 2.5cm cyst on my right ovary…really?!?  Damn.

ER visit, around Hour 8

 

Sunday (and on the fifth day they rested…at least from medical business).  Monday was President’s Day and I had off work and was free from appointments, but Baloo got his rabies vaccine.  Tuesday we met with surgeon to discuss options…not a great candidate for resection at this point due to: location of main tumor (uppermost area on right side near the back/lung…tough to get up in there), size of tumor (ablation not really an option, they have to make a large incision to get at it), stability (tumor is still growing, 25% bigger in 2 weeks between scans 😦 ), 3 month recovery from surgery would make the timing of systemic treatment like chemo difficult, and finally that damn blood clot in the portal vein makes surgery risky.  Had an overnight sleep study thrown in there, too:

Slept surprisingly well with all that shit attached to me (arms, legs, head, chest).  Dang.  No answers there…

 

So, we’re beginning this cycle of treatment with radiation (see previous post for mo info), but won’t know for a month (or two or three) if it did the job.  In the meantime, we’re still waiting for my genomic sequencing results to come back to see if any specific markers or pathways are identified that might give us a leg up in figuring out how to attack this beast systemically.  Doc thinks that since chemo didn’t have much effect on the breast tumor the last time around (we finally were able to find out specifics about that first clinical trial I was on and turns out I did not receive the study drug, veliparib or even carboplatin…which is good in a way because historically triple negative BCs have better response rates to platin drugs, so it might be a good option for therapy down the road), chemo alone (even in tandem with another chemo drug) won’t be the best option, but mixing in an immunotherapy drug or something else might do the trick.  I have a couple smaller, indeterminate masses still taking up residence in the right lobes of my liver and we can monitor those for response to systemic therapy.  Surgery, specifically ablation (burning or freezing), could very well be an option for those masses, as well.  If the right side of my liver wants to continue to grow tumors and we have to remove/radiate more and more of it, they can try to expand the left side to compensate.  I know, science, right?

My bags of drugs are getting bigger and bigger…you’re welcome, big pharma!

And now I’m off to do some of this activity they call quilting, which I haven’t done in so long I’ve almost forgotten how it works…

❤ love ❤

-JEB

 

Quick rad update

I have a longer blog started but wanted to get out some info:

Brain mets? NOPE!

Bone mets? NOPE!

Surgery? NO (at least, not yet)

Chemo/immunotherapy? NO (not yet…)

Radiation?  YES!  Starts today (I’m writing from the waiting area…).  5 treatments over 10 days, 50 gray total exposure (same as I had in 28 doses the last go round).  Hitting this biatch hard and fast!  I am not a good candidate for surgery at this time (more on that in a different post), but the rad onc is pretty confident she can obliterate the main tumor where it sits.  And we’re off!  I’ll likely be much more fatigued this time, which means we most definitely could use some help around the house.  I feel like people have been waiting for me to give the go ahead on this front, so here we go!  Got a few Brunner Girls coming over for cleaning duty this weekend ❤  The other big items on the wish list are Boo walking and help with meals.  If you think you might want to hang out with a cute, smart, ENERGETIC puppy on a walk, playdate, or outing to the dog park, give a holler!  As for meals, just shoot me a text, IM, or email about what day/night you’d be able to stop by.  If one of us can’t be here, we’ll leave a cooler for drop off.  I’m working toward vegan these days, but minimally vegetarian.  Soups are great.  Just about anything with potatoes works!  Curries, pastas, rice dishes.  Fruit or veggie salads.  Kevin and Maggie are still carnivores and happy to accept dishes with meat 😉

Update:  I’m home now following treatment.  The ViewRay MRI-guided radiation procedure itself went well.  Because the tumor is right up against my lungs, they have to time the targeted delivery during a point in my breathing cycle when the position is stable (minimal movement) and most advantageous (not near other organs and closer to my back than front).  So the actual radiation is only delivered during the time periods for which I am holding my breath at a specific lung capacity, for a total of 28 minutes.  Breathe in, hold for as long as you can while staying still, breathe out.  Repeat over and over.  For most folks, this usually means about an hour in the MRI unit in total.  I’ve got bigly lung capacity, can apparently hold my breath for much longer than the average human, and am good at gauging the right place to stop and hold while breathing in.  So my time in the unit was about as good as it gets, they said.  Which means I’m winning the ViewRay radiation competition!  Well, they tell me there is no ‘record time’ target to shoot for, but you know there is…I’ll get it out of them.  I WILL WIN!

Then I got out of the MRI feeling dizzy and nauseated.  Yuck.  When we had the planning conversation with the rad onc, I forgot the bit on taking Zofran (antiemetic) an hour before the procedure.  Oops.  They gave me one after, but it was too late.  I found myself pacing the waiting room ready to puke, then in a unisex bathroom with Kevin (there to hold my hair…ha ha, another benefit of short locks!) until I thought I could make it to the next floor, where I finally ending up doing the deed in an automatic flushing toilet.  Not ideal.  I already had a cold going into this, so I feel like death warmed over right now and waiting for round two of the up-chuck fest (not kidding…I’m writing this from the bathroom floor…ok, that just happened).  I made it through 5 months of chemo feeling constantly nauseated but never actually vomiting…won’t forget my Zofran on Friday, tell you what!

So, yes, Boo and meals.  It is clear that Boo and I will not make it in close quarters together for long periods of time without me being able to take him out to work the energy off and I’m already feeling too dog tired (I’m soooo hilarious!).  He is good and calm when I’m physically in bed but otherwise does a lot of running around, chasing cats, jumping on and off the couch, and whining (oh, dear Lord, the whining!).  Because that’s what a puppy does…  He is used to lots of walks, playdates, and romping in the park and needs to be wore out but good every day.  Please, take him off our hands, for a few minutes, or an hour…for a night 😉

OK, I’m off to sip my lemon ginger honey tea and hope I can keep it down.  Fingers crossed!

❤ love ❤

-JEB

Long time no blog…

…which means there’s either good news or bad news to share, and I’m afraid it’s the latter 😦  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 ‘normal’ 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’ll 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…would have been much easier to win this cancer fight if it didn’t decide to rear its ugly ass head again 😦  But I’ve been through this shit already once before, so I’m seasoned and ‘cancer mature’ 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’ll 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!

Pondering fierce

FIERCE fierce (scaring small children who probably SHOULDN’T BE IN THE AIRPORT BAR ANYWAY!)

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 – give it your best shot!).

Peace and love and hugs-

-JEB

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 😦  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 🙂   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 😉

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

-JEB