Day 6

blog rads capeI have begun radiation yet again. While this isn’t my first rodeo with radiation, I cannot even believe how far this particular modality has come! Wow. In five years it is incredible the strides that have been made.

So the other day while I was knocking out day 3 0r 4 of my 25 daily treatments- I said to the technician, “Yep I can’t believe how far all the technology as come.” (I was so silly proud at this very moment to be a “Lifer” because who else has that kind of knowledge but the techs?) The technician looked back at me and said “What do you mean”?

Well, to start with the actual set up “mapping” appointment was insanely more efficient. Instead of the process taking 90 minutes, I was in and out of there in less than a half hour. In my original radiation they had to check, recheck and check again before filling what looked like a garbage bag full of concrete. Yes, crazy picture in your mind yet? Then you are still with me! Ha. They fill this bag and where I was radiated (right breast/axilla) I was instructed to lay topless, exposed on top of this bag with my arms over my head. Ah yes, dignity be damned! Gone. This bag would turn into a hardened mold in which I would lay in the exact same spot each day. Then the tattoo I had been dreaming of all my life came. It was a set of blue dots on my top and side. Oh yes, my dream tattoo ends up being but two guides to stream toxicity into me. Talk about a total let down. Then in and out of what looked to be a ct machine with lasers. And Voila! Ninety minutes or so later I was on my way out. The awesome Dr. K would set it all up and I would begin daily radiation in days.

Today, however – I walked in they had me change into a gown, I got aboard the medical table express and boom we were setting my mold before I knew it! Yes, no mold full of chemicals! Nope, this time they had me exposed…again! But the mold was being pumped full of air! Holy novel idea. I like it. Because let’s face it air doesn’t need to set! Of course that feeling of total exposure was still a huge part of the process. This time we are working on my left side and the tattoos go on. Yes, I now have four tattoos that are not nearly what I would have pictured in my younger years! Ha. They are all the size of the tip of a ball point pen, more mole like than anything else. When the techs are setting up the lasers they leave the room and there I lay by myself on a table with my arms over my head, naked, exposed, alone, like middle of the universe alone, a few tears bubbling up. And despite this super ridiculous situation I can’t help but think, “I wonder how fat I look”? I wonder what techs think when they have to deal with women of my size? How are my abs ever going to get me off this table in a graceful way? Am I going to need a hand? If so, how embarrassing? I wonder if the laser is going to feel any different? I wonder if skinny cancer patients feel better about this? Probably not. I decide to close my eyes, as I am thinking here we go this is at least forty minutes if I remember correctly. But, what is that sound? What do I hear? Is that the door?Sure is and I hear the soft voice of K, one of the techs. “All done” she says. “You did great!”

Luckily for me K,takes my hand before asking if I needed a hand (thank goodness the weakness of my middle was addressed before I had to address it !) And voila! I am done! I come out of the dressing room to pick my very fancy radiation cape (trust me, my pick is fierce as hell! ha.) that will be mine for the next 5 weeks and boom, done. Lucky for me I see my lovely social worker on my way out. Seeing her is always reassurance for me, she’s been with my since 2010.

If I thought the mapping was a step into the future, my very first radiation treatment was really “Jetsons” like. Wow. Instead of a CT tube. I would be climbing aboard a table that moves up and down as well as side to side. The beam would be moving around me, instead of what seemed me moving around it. From what I (very limited science mind here) understand the pink bright light that projects on me is there as a safety stop as it measures exactly what my skin should look like if I am lined up properly. Can you believe that? The lasers will shut down if anything is even just a smidge off (I am so glad to hear this as we are messing close to my heart this time around). It’s all pretty fascinating and takes 8-15 minutes total. Of course, laying there completely exposed, totally alone still kind of sucks. But, these ladies tend to pump some sweet tunes in the room to quiet  my inner “neurotic dialogue”. While I still panic about  how fat I may look laying here like a slab of meat. I figure, they’ve seen it all. And by day 5 any circus music that comes with me climbing aboard the table is old news! Ha. Yet, still faint…

So, today is day 6 of 25. One thing that remains the same over the years is the incredible warmth of this office. The office is largely comprised of women. There is a certain togetherness,  an unspeakable understanding, a comfort when you walk into this beautiful tribe of women. From the receptionists, to the nurses, to the techs, social workers, all the way to the incredible Dr. K. The office is loaded with some really good vibes. Now, let’s just see if those good vibes can carry me through to day 25!

An Ode to Lorac

momThis will be my seventh Mother’s Day without my mom and my 13th as a mom myself. I am so incredibly grateful that I had some overlap.

When I say overlap, I mean I feel lucky my kids got to meet my mom. Even if they were really little when she died, even if she was really sick for most of their lives, even if they don’t totally remember live memories, even if it takes photos to jog their memories. They see pictures and remember Grandma-ma (as she liked to be called) snuggling them on the boat, feeding them ungodly amounts of sugary or buttery items, doing puzzles with them, singing along to Grandpa’s guitar (almost certainly with the wrong lyrics! Swedish A Hiker comes to mind or is it Sweet Hitchhiker Ma?). Laughing, always laughing.

My mom had such a unique ability to accept people, to love people, to draw them in and keep them close, protected. Growing up, our home,particularly the kitchen, always had neighbors, families, friends. It was the center of my ma’s beautiful kaleidoscope. It was grand central station at any given time or day. This was her comfort zone – cooking, laughing, talking, always with an array of different characters. She would cuddle and coddle the crap out of them! I bet I couldn’t name 10 people that my mom didn’t like. She was a lover for sure. I always thought she should have been a peace loving flower child but met my hard charging dad instead! But, now as I look back on their 40-year plus union I can’t help but think all of ma’s flower child ways evened that out.

It’s hard for me to write just one thing that I miss about my mom because she was the glue. She was a natural “connector”(unless of course this connecting should take place during Jeopardy or Wheel of Fortune – then it would have to wait). She was unconventional in every way. She didn’t fit in with the other moms and was a renegade way before her time! Fancy dinners, pretentious events, competitive parenting, tap her out! This was a woman who happily swayed to the beat of her own drummer. She treated all five of her kids like they were her absolute favorite. (Man, I wish I could master that skill!) As a mom of three, I don’t know where she got all that love? There was always a gentleness about my mom. Honestly, when ma would get mad, really mad my little brothers and I couldn’t help but crack smiles. It was so out of character for her. We’d giggle a little as we knew rage or anger was not ma’s natural state! Ha.

As the years pass without her physically here, I find myself weepy, the anger is gone, the bitterness fading. Instead I see my ma looking back at me when I ask my middle kid, “What was that, what did you just sing?” Ha. Nope, I think the words are supposed to be… Or when I find my oldest snuggling up next to me on the couch. He seems like he’s on that cusp of getting too big for hanging with his ma, but there he is (just like all three of my brothers with my ma, they never outgrew snuggling up to ma).Or when my youngest takes to eating pierogi as if it were an Olympic sport!  And sometimes, one of my girls will simply ask a very “Rose Nylon” question (That must be a lot of work for a farmer to perfectly trim all those trees exactly the same? ME: Um – I think animals might do that, I think it might be called a “browse line”). And boom there she is in all her glory! She’s smiling right back at me, laughing away.

Sometimes it’s a scent, sometimes it’s a food, many times it’s a song and I long to pick up the phone and call my first true “Bestie”. When there’s great news or awful news – I struggle not having her on the other end of the line. She made everything better. Whether it was a kid who wouldn’t sleep, a recipe I couldn’t figure out, trouble with a friend, boyfriend, husband – she would listen, no matter what was going on in her life. My ma had a knack for letting you know you were important and she was there, always there. I think the worst part is not having that home to go back to when you need what only your Ma can give you. I’m the home now and that scares the crap out of me!

So this year as mothers day rolls around instead of feeling bitter, almost jealous of all of you who get to spend the day with your moms, instead I shall remember all that love that ma gave to me. I will remember her beauty, her warmth and that laugh, damn that laugh. She gave me so much, if I could just be half the mom, wife, friend that my mom was I will feel extraordinarily successful in life.

Thank you Lorac!

Waiting and worrying

rainbow blogThankfully this week has felt a bit like a hamster wheel, going, going in all the different directions. This hamster wheel effect has certainly helped me and the hubs ride out waiting for CT results from Monday all the way to Thursday.

After having a late afternoon CT on Monday to investigate some very elevated liver function tests we were off to UW-Madison Tuesday for a follow up with the lovely Dr. W. All is well with Dr. W. The lymph node scar is healing well.

After a day in the car, thankfully baseball practices were cancelled that night. Ah yes, a sleepless night Tuesday thinking about my liver. Who thinks about their liver? I guess I do. I mean I am laying there in bed really putting thought into my poor liver (so much for sugar plums! All that sugar is no good for my liver!!) Hmm -What color is it? How big is it? Have I been taking care of it? What if it is cancer in my liver? Then what? What drugs will I go on? Eventually I fall asleep with the mantra “no more hard chemo right now, no more hard chemo right now”.

Wednesday or day 3 as I call it. I call to make my radiation mapping appointment. Ah yes, five weeks of radiation to look forward to, can my liver handle that?  I trudge through the day, all the while my liver is front and center. I go for several walks and do a little bargaining with the Big Guy. If this isn’t cancer in my liver, I will start or stop doing this or that. Oh yes, it came to that. There was a bit of pure rage mixed in there as well. The thought that my onc is making me wait for four whole days for results! By Wednesday night all I can think about is my liver. Thank goodness for mindless Andy Cohen TV – I love you Bravo network!! However, I find myself watching these women drink until they are completely sloshed, I wonder what their livers look like? Back to my liver.

In my mind, I always thought this metastatic cancer would go elsewhere first. I was thinking the lungs actually. Yep, I have plowed a bit of time into where this thing would go once it is ready to leave the bones and move on. And then thoughts of my brother Joe enter my mind, after all Wednesday would be like Joe’s Fourth of July holiday, good old 420! Ha. So, I’m thinking of him, lately I have felt like he has been around. Sounds crazy to the non-believers, but the believers are reading this shaking their heads up and down, yep, they know what I am talking about. I just feel him. And maybe his presence is a painful reminder – to go back to center Kate, get a grip and be thankful YOU ARE HERE. It is ok. Wednesday night is the most restful night of sleep I get.

By Thursday morning or Day 4 – I am more than ready for results. I’ve got good vibes being sent to me via text from so many of my besties, so many good wishes. By this time I am convinced I am fine. Joe is with me and this will be some silly glitch. Either my gallbladder is off or one of my meds is throwing things off.  I can’t explain it. I get in the car and the song “Wonderwall” comes on, again my thoughts dart back to Joe. Somehow, I walk in to Dr. G’s office so very confident.

As I climb the massive staircase to Dr. G’s office I am greeted by one extraordinary chemo nurse, the lovely S. She always has a smile on her face and Joe actually brought us together. S reassures me with a smile on her face. Again, just another sign. This was just what I needed to settle in, a familiar, caring exchange.

I hear my name, I walk to the exam room and go through the motions. My blood pressure is ridiculously low considering what I have been through since Monday. But – I have a completely mellow, very certain outlook it will be ok. I have no idea where this “zen” is coming from – at all! Dr. G rolls in, flips to his screen and tada! My liver is fine. As a matter of fact it looks better than it has in the past? Yep. My liver does not have cancer. Of course, I have to almost shake the grin off my face and continue to listen. What the hell? What the hell is wrong with my liver function then? After A LOT of looking through everything again and again, and maybe one more AGAIN – the conclusion is my monthly injection may be causing my liver function tests to shoot up.

Now, with relief I notice a bit more rage creeps back in. No one could have delivered the news sooner? Really?  This is good news – I notice the time stamp on the radiologist’s report is Monday at 4:58 p.m. Really? I am six years into this thing and I don’t think I have EVER waited this long for results. No one could have responded to me and let me know it looks good? I can feel a bit of heat rising to my face, is it a rage driven hot flash? Good grief – I need to get a grip!

So, moving forward we are going to go ahead with the monthly injection and follow the liver function tests.  In my mind I wish I would have worn prettier underwear. Ha. I go and wait for the lovely shots in the ass that are coming. I ponder all that I just went through this week to get here. Here I am waiting for the very butt shots that could cause these elevated liver function tests. I ponder what Joe would say or do. He’d laugh and tell me to chill but he’d listen. Actually he did do that. He sent me the signs to tell me to chill and with two sore butt cheeks I get in the car only to hear the song, “Comfortably Numb”. Well played Joe! Well played.

 

Two days in a cancer life

Blog image 2016As I changed into my fancy hospital gown, for what would be my 8th breast MRI, I couldn’t help but reflect. Reflect on what they would find, how many times I have done this and how many times I will do this again. And to be honest the funky “hospital smell” of the gown? Why, why does everything hospital smell stale and like it was washed in dirty water? What’s up with that?

As I rolled into the room like a true professional – my port hooked up and ready to rock some contrast, I stopped in my tracks staring at the opening of the MRI – Holy Crap! Is that hole getting smaller or am I getting bigger? (I think I know the answer!) How the hell am I gonna fit in that. As panic rose in my mind, my body turned into a hot mess! Again, thank you cancer for these awesome menopausal hot flashes – they always come at the perfect time! Great now I shall enter the tube sweaty and full of anxiety. I, very awkwardly, climbed aboard the table of fun and laid face down. And once again as I lay my face in the cradle I smell that hospital linen smell on the cloth. Ugh. I must insert a shout out to the two incredible female technicians – they were AWESOME. And they made this as “normal” as possible. Hmm, normal is a very “relative state-of-mind”.

So, my hot, sweaty, chunky butt gets pushed, I should say wedged into the machine, for a minute I think, “I can’t breathe” but alas my panic settles in to a do-able mindset. Now, an hour in this thing is always a challenge. But, this time I find myself laying there hearing the knocking, thumping and bumping and my mind goes to my two beautiful little girls. Will they have to lay here exposed, scared and anxious? Is this the price they will have to pay for my metastatic breast cancer? It seems they’ve paid it forward so much over the past 6 years. I can see their faces confused and scared in this tube. While for some it seems like a small price to pay to ensure that they remain cancer-free, I can’t help laying there and mourning the loss of their “normal”. All that time in my head, has the MRI over and done in record time. I’m being yanked out, finding myself flattening my chunky butt a bit in order to squeeze out. Results to follow the next day when I see my radiation oncologist.

Thursday comes quickly and first thing I am consulting with my radiation oncologist, the incredible, spunky, fashion-forward Dr. K. I wait patiently to hear the results  of the MRI. Can I get an “all clear”! Hells yeah. I hear her say, “everything looks good, all clear”. As I breathe a sigh of relief the next part comes – Dr. K is recommending 5 weeks of daily radiation to clean up where my lymph nodes were removed on the left side. I trust this doc with my life, she has been with me since the cancer has been with me and it helps she is a total SMARTY PANTS. Ok – I spend lots of time asking questions and catching up. I get a little time to catch up with my old friend and social worker the incomparable Ms. M. Seeing her smiling face puts me at ease immediately.

It’s now 10:30 and I need to haul over to my cancer center for my monthly blood draw, doc appt. and injection. As I sit at a light I can’t help but resolve the idea of radiation in my mind. I’ve been through worse and I’ve seen worse. “I got this,” I tell myself.

I roll into my regular cancer center to have labs and then head up to see the lovely PA Ms. G. As I sit, I am feeling pretty confident. This is my regularly scheduled monthly check, it’s my wheelhouse. And I look across from me and there is a young man, he looks maybe 30-35 and he’s really sick, he’s wearing a Cubs hat and he’s with his mom. He so painfully reminds me of my brother Joe – tears begin to well and then I hear the tech yell, “Joe” and he rises. My heart drops. I take it as a sign. A sign that I should take the radiation news in stride. A sign that my brother Joe never got the chance to see radiation or chemo or any kind of treatment work. A sign that I am so lucky to be here at 37, that my Joe never got to see 32. For a moment I sit and let the sun hit my face, I recompose myself and remember how lucky I am to be sitting here. And how lucky I am that my Joe sends me these signs. Cancer treatment may suck but at least I am here.

Alas, I am upstairs with the lovely PA Ms. G and we are going over labs. Everything is looking good and I am feeling good. And with no warning my liver counts come back and they are not so good. So high and out of line that we are scheduling a CT scan. What could cause this? We all know one thing that could cause it and I hate the thought. In addition to the big C, it could be my monthly injections? Or repeated, excessive amounts of Tylenol or alcohol – neither of which I have had. So, now I must hurry up and wait until Monday for the CT and Thursday for my onc to review. It’s probably nothing – but, unless you’ve waited for a scan you simply don’t understand the anxiety, the bargaining one will do to make this ok in one’s mind all to get through the weekend. And then my Joe enters my mind, and my perspective is immediately adjusted.

So there it is, just a window of time in the life of a metastatic breast cancer patient. Just as I left one appointment thinking, “Ok – if radiation is the worst of it today, I can handle it”. Only to arrive at the next appointment with more worrisome news. It all seems cruel and unfair until I think of my Joe and suddenly things don’t seem so bad. If there’s a liver issue we will figure it out. And if my injection needs to change – well, lucky me, there are more meds out there!

So this weekend with sunny, warm temperatures in the forecast I will plan on giving a few more kisses and hugs to my kiddos, a few more walks and a little more time on the swings. I will breathe in the spring air and I will appreciate right now, right now I am here.

Calm meets edge

kate blog 2016For a couple of weeks I have wanted to update this blog. Instead,  I’ve spent the time searching and searching for that silver lining. For the past 5 1/2 years every time new, unnerving information has entered the picture (usually news of progression) I’ve spent some time reflecting and typically that silver lining comes to me. Just as I am at the edge, POP! There it is something that I can look forward to, some type of salvation in the story.

I’d be lying if I said that was the case this time. I’m a bit on edge after the past couple of months. It’s been a tumultuous, overwhelming few months that have tested my faith. When I say faith, so many meanings are implied there. I never thought I would throw my arms up in the air and just cry in frustration. I am usually a “planner” and a positive one-step-at-a-time kind of gal. I feel like I’ve been twisting in the wind lately, clearly not a comfortable place for me.

I’ll start at the beginning. My PET SCANS from early Dec. With a barrage of scans always set for December – the information can be uplifting for the holidays or just downright depressing. This year I left my appointment with my Onc feeling fairly good about what was ahead. A new drug (granted it is a very glamorous butt shot – insert eye roll here) it was new, which means hope. The scans showed a few hotspots that we seemed to zip through and I was on my way. I asked for a copy of the scans and didn’t get one that day. No worries, I dogged my poor nurse navigator for weeks to get copies mailed to me. (This woman must see me coming her way and wince). But, I like to keep hard copies for a number of different reasons. The said copies came in the mail in mid-January and well, they didn’t give me the warm fuzzies. Geez, had I not been “all there” during that Dec. appointment where I felt cautiously confident heading into the New Year? Confident that this metastatic breast cancer was pretty well under control?

Fast forward to “Keith Morrison/investigator reporter Kate rolled in with a little Trapper John MD Kate” and suddenly I am dying in a matter of weeks! AHhh. Ok, reeling it all in. The point –  I am going on six years of reading the reports of pets, cts, MRI’s, ultrasounds, biopsies, mammograms, etc…you get the point. I am no babe in the woods here. I’m all over these things and naturally I whip out my last PET and start comparing. Yes, cause for some questions. My next “butt shot” appt. with my onc is just days away at this point. I drag my poor hubs to the kitchen table and study and restudy my results. We google, we read and re-read, we highlight. Long story short we roll in to the Onc ready for some answers and the best part? We are a united front -ready for what comes our way. The most disturbing finding in this report was some “uptake” in my colon again! A surgeon had taken out a “precancerous” mass back in May when a PETSCAN had highlighted the area. Here it was again? Not a lot of answers from my onc. I asked about another colonoscopy now instead of waiting until May (my follow up) and my onc seemed to agree to refer.

One week later I was doing the prep of hell for the colonoscopy that yes, I insisted upon. What the hell was I thinking? Am I a masochist? I drift off during the procedure and head home feeling confident this was a “Just in case” colonoscopy. Hell, I am already thinking of those other spots that are going to be the focus of my next appointment with my onc. My colonoscopy was on a Thursday and my surgeon called first thing Monday morning to tell me that well, yes, looks like some high grade A-typical cells are there. Precancerous cells in the exact same spot as May. They will need to go in and do further surgery, the sooner the better as the scarring will provide a good guide for the surgeon. I quickly ask, is it my breast cancer? Is this a metastatic spot? I almost fall over when I am told, “No”. This is a whole new beast if it is indeed cancer, it is colorectal.

WHAT? Seriously? I am 37-years-old. I have had metastatic breast cancer since I was 32. I have been beaten down with treatments over the years. I have watched half my family die at the hands of freakin’ cancer! But – Aha, alas the silver lining I have been blessed to tolerate the treatments and they’ve worked! I’ve been surrounded by loving, caring people during those times of death. But, this, this may be one toke over the line – even for me.

Today – I went into surgery (starving with an ‘iffy’ belly after the damn prep AGAIN). The surgeon was efficient and kind. It was outpatient. I rolled into the OR like a “baller” cause hell yea I know my way around this scene! I also know my way around 10,9…lights out. Ha. When I woke up in recovery, a bit groggy, I noticed and felt some wetness on my face. Tears rolling down out of my eyes. The sudden surge of sadness that I am yes, here again. It seems like all roads lead here to a dark recovery room, waiting again. Maybe it was the drugs? No worries, I quickly got it together. But for those few minutes, it just felt good to let it out by myself in a dark recovery room.

And here I am again, waiting. No course to set my sights on. Pathology should be back by midweek. I’m praying for good news but whatever it is, it is and I will deal. Best case – we are all good and monitor. Worst case – we’ve got a whole new chemo regimen to tap. And then the places in between. The waiting. It’s the waiting that sucks. It’s the waiting that finds me peering over that edge. Where is my next move?

After all of this, the Hubs and I have opted to make the trek to a larger, research facility for a second opinion regarding all of my care. I shall make sure my medical records or my small novel as it has been dubbed, will make the journey as well. Let’s just get a fresh perspective. We are lucky to be headed that way on Friday. Until then, I wait. I find my “Zen” somehow.

 

 

New year, new thoughts, new hope, love

Blog flyingWow, I realize I am a little late to the game here – a brand New Year! 2016 is here and new possibilities and hope are in front of us.

I have so much to say, I am just not sure how to organize my thoughts and prioritize. A New Year and the possibilities weigh on me heavily. I look forward. And first and foremost, I am so grateful. But, I can’t help but think of the ones we’ve lost. I have been so fortunate along my metastatic breast cancer journey to have met so many incredible souls. Whether it was through retreats, conferences, via email or a message board or maybe even at my own cancer center. There is an incredible sisterhood out there. An incredible community. A warm, compassionate, unbelievable community. I am blessed to have had the privilege to meet so many in this community. I have been blessed to listen to and tell stories of hope, sorrow, frustration, peace and many times see the end of the journey. The last few months have been flooded with the latter – so many leaving this earth. Mothers, daughters, sisters, friends, cousins, nieces – all of these roles wrapped in beautiful human beings who lived life courageously in the face of death. It’s so hard but it’s so amazing to have walked with them just for a bit. I can only feel peace and comfort knowing the cancer has left them. I send peaceful, loving thoughts to their families who now must deal with that horrific absence of love and hope.

As I reflect on the new year and the old year (2015) I am again finding myself unbelievably grateful. So grateful for the love and positivity of my people around me (you know who you are….anyone reading this!) Until recently, I don’t know that I told you all how grateful I am. My family is blessed with an incredible community around us. So much LOVE. That love was on display recently when our family had the good fortune of a life-changing trip made possible by an organization called Inheritance of Hope (www.inheritanceofhope.org). We left an all expenses paid Disney vacation with new friends, new hope and a restored appreciation for just plain old – love and empathy in the human race. This organization they brought us all together, life-changing friendships for my husband and I – but more importantly, our kids. They showed us unconditional love, they waited on us with care and tenderness. Our “Lauren” was a godsend to us. My girls speak of her as a family member. Three days, she had three days with us and left that type of impression. Pretty unbelievable, pretty selfless, pretty special. There is no “thank you” for what this organization did for me or my family.

We left this retreat and since we got home, I feel myself pausing as the sun warms my face, in the car or in my kitchen, I am feeling that warmth. I feel myself mindful of the love around me. Whether it is that friend that walks with me everyday, or that friend that texts to see how that doc appointment went, or that friend that sits back and has a beer with me when I finally feel like talking about that PETSCAN gone awry. Maybe it’s that new connection who FB messages me late at night and shares their hopes and their anxiety. I’m feeling blessed. I once had a wonderful, incredible friend tell me (on the way to Madison on a school field trip) that, “Kate, you are a connector. Plain and simple you bring people together, I love that about you,” she said.

Am I connector? Or I am just lucky to have connected with so many. I’ve been so blessed that people connect with me.

Feeling cautiously hopeful as far as treatment goes. But feeling blessed by so many of you. Thank you. Cheers to an incredible happy, healthy, joyous 2016. And to those leaving this world – love and peace for what comes next.

 

Third line defense

My awesome little made this awesome cupcake in lieu of five years!
My awesome little made this sweet cupcake in lieu of five years! She wanted to take a pic in front of our “card shower” closet door:) So much love all around.

Third line defense? Hell – I hope that isn’t like third string defense? Because I don’t have a whole lotta faith in third string defenses? Ha.

I sat in my post-op appointment with Dr. G eagerly awaiting the news, any news, the path forward, the plan. (I should mention I sat semi-comfortably with the drain removed!) This is certainly a man with a plan, always a plan. So, there I sat and when he said we are on to our “third line now” and we think a monthly injection is the way to go. Hmm, okay back up, third line? What does that mean exactly. He quickly brushed over the fact that we had exhausted two other treatment methods/drugs or types of drugs at this point. Now, I sat there a bit perplexed? Should I be happy about this? Should I be sad? Disappointed?

I should note that the day before this appointment – officially marked FIVE years. Yes, five years ago – I heard that I had cancer. It seems like an eternity ago. So much has happened during the past five years. So much. So, when I look at things that way, well “third line of defense” seems like great news. One has to understand five years ago (go ahead and insert that whole eighties sit com flashback garble here) understanding the words “I had cancer” it had so many meanings. I had cancer, I had three little kids, I had a husband, I had my dad and my siblings. How was I going to tell any of these people this news? We had just lost my mom almost exactly one year earlier to cancer. How could I bring this damn thing back into everyone’s lives? It almost feels like two different lives, pre and post.

Five years ago on Nov. 1st – I was told I had cancer, the extent, well that would take until Nov. 15th. I will never forget that day either – the day I was told I had metastatic breast cancer, Stage IV –  It couldn’t be cured, only managed, I was just 32.  My chance of survival for five years? A whopping 22-25 percent chance. Yep, and let me tell you – I am not a gambler. A quarter or less shot that I would be sitting here right now.  It seems impossible. Thank GOD I had such incredible people on my side over the past five years. From an incredible medical team, each nurse and doctor,  each technician, receptionist and one extremely special social worker. From the really hard chemo, to the radiation, and eventually to the maintenance infusions, they’ve given me such incredible care, compassion and hope. And that’s just the medical team. My family and friends have rallied again and again. My husband and my best friends – the incredible JP and the amazing Miss K. But – Particularly my dad and my two little brothers, Pat and Joe. They supported me in every way. Whether it was sucking down smoothies and watching the Bears attempt to win a game or whether it was just laying around watching marathons of “River Monsters”. I can just never remember feeling truly alone. What an incredible gift.

Five years, in just five years I lost my dad and brother to cancer. Right in front of my eyes, they disappeared. Unfair, painful deaths as I sit here with my “stage iv diagnosis”.  Two of the men that supported me, that fought for me, that picked me up when I felt like I couldn’t go any more – gone.

So the third line – Hell, I am just so grateful that there is a third line, a fourth line, a fifth line, etc…I feel so fortunate to be here. So fortunate, that I was able to ride the majority of my five years out on the same combination of drugs. A combination that statistically should have bought me maybe 2-3 years. But, here I am.

So, tomorrow I will head into Dr. G’s office for my first injection of this “third line” and I will pray that I will get another five years out of this line. I will hope to see my kids in five years at 17,16 and 15 years old. It seems so far away but, each day, each moment I am trying my hardest to drink in, to hope, to see, to love.

A little Frankenstein for Halloween?

It’s been awhile – however the surgery is done! This recovery has been a little more “draining” than I had remembered. But, the lymph node dissection surgery at UW-Madison on Oct. 8th went…well, it went. I am so glad to say it’s done. I am also incredibly grateful that I went with the surgical expertise of Dr. W, as the surgery required a bit more “dissecting” than was expected.

Honestly, the day of surgery started out pretty well. The hubs and I made our way to Madison for the 2:30 p.m. surgery. We arrived about noon ready to go. As we sat in our “getting ready” room we had the anesthesiologist (or as I like to call him Dr. Feel Good) come in and explain the plan. He seemed confident with a nerve block and sedative for surgery. The plan being the nerve block will help me recover a bit faster since I won’t feel the worst part right after the surgery. The surgeon Dr. W came in next and checked in with me. She explained the surgery should take about 1-2 hours and then they would move me to a room for the night. I should note – I felt a bit bad for all these docs and their teams of residents as a bald, eyebrow-less me sat there looking bloated (thank you to those chemo steroids and my own lack of self-restraint) in a hospital gown. I must admit I felt even worse as I looked on to the many, many, good looking, healthy,  20-something residents staring back at me! Very Grey’s Anatomy:)

So with expectations managed they wheeled me off. The did the injections for the nerve block in one room and then with my port hooked up to what I had hoped to be terrific drugs – Ha, we were off to the OR, which I am happy to report was filled with a group of young, intelligent, talented females! All females. What are the chances of that? I even told them all “Girl Power” and that my left arm wasn’t quite numb? That’s all I remember. Fast forward to about 7:30 p.m. that night and I woke up groggy with a sore throat and a lot of confusion with my exhausted hubs looking on.  It turns out the surgery lasted a whole lot longer than anticipated, the nerve block didn’t “take” and they had to put me “under” after all. I finally got to a room about 8:30 p.m. that night. I was greeted by my bff and her mom who had made the trek from Chicago.

I settled in but so did the pain and discomfort. Luckily, throughout the night I had a lovely nurse who believed in “managing pain”! Ha. On Friday, we were greeted by my surgeon who gave us the low down. I was going to be in a bit of pain and experience soreness, as they really had “to go in deep”. It turns out one of the cancerous lymph nodes was deep in my lateral region and the other where they had expected under the left arm. They weren’t sure how many nodes they had removed yet as they were all stuck together, pathology would let us know in the coming days. I would be discharged with a drain under my left arm. Now, the drain was nothing new – remember I had this same surgery and then some about 5 years ago except that was my right side.

Later in the day on Friday the hubs and I would make the two hour trek back home where I would lay around for the next few days. The hubs diligent about emptying the drain and recording the amounts. I, on the other hand, I am good about HATING the drain! I could deal with the incision and the dressings, but screw this damn drain! Ugh. Sleeping is limiting, showering is a pain, going out in public! I feel a little like Frankenstein right now with the bald head, the lack of eyebrows and now the bulging drain beneath my clothes! It’s getting a bit ridiculous.

So, I had put off updating this blog, waiting for that follow up date with my surgeon or as I called it DRAIN REMOVAL day. Ahhh – October 20th couldn’t come soon enough! Alas, Tuesday the 20th came and my little bro agreed to drive Miss Daisy to her appointment in Madison, as the hubs was out of town for work. I am almost giddy as we make the ride. All I can think about is sleeping on my left side tonight! It’s gonna be epic! Legendary! On the way home I am going to lean this way just because I can! And what do I hear when we arrive?? Nope. The drain isn’t ready to come out!?!? What the hell! You’ve gotta be messing with me! Nope, it’s not ready, there is still too much fluid draining! Thanks a lot to the Hubs for his diligent recording and drain management! Ha.

So, here I am two days later and guess what? The damn drain is still draining too much fluid. I will say, I have had to find my “Zen” on this one. My feet are not just picked up in the lazy river of life, they are kicking and flailing! Ha.

But – the appointment on Tuesday wasn’t all a waste. The incision is healing well. And my pathology was back. Although the cancerous lymph nodes didn’t see a great deal of shrinkage after 13 rounds of chemotherapy, there were only the original two that had cancer. Somehow, some way, the cancer had stayed within the orginal two. They removed 10 total lymph nodes and two had cancer. It showed metastatic breast cancer in the nodes – so it was what we thought it was and radiation is next.

So, the plan is to kick back and relax, heal, spend MORE quality time with this damn drain! Ha. And in early November we will figure out radiation. Right now the plan is 6 weeks of daily radiation.

And I can’t say how humbled I have been to feel all the love from so many. It’s been cards, flowers, meals, rides for the kids, texts, emails, etc…It is such a humbling experience to be incapacitated and feel all that support from so many people from so many different areas from my life. Thank you.

So, until this silly drain is removed and I have a solid radiation plan…I shall be lifting up my feet. The good news is my “Frankenstein” look is very in season right now!

A change of plans

Well, it has been entirely too long since I’ve updated this blog. For some reason, something has been keeping me procrastinating? I am not sure the reason. Maybe it was that sense of failure I felt when we stopped chemo three rounds short of our planned 16 total? Or maybe it was that inevitable sense of dread about an upcoming surgery a little further from home than usual…or maybe it has been the annual “pinking” of a month again? I’ve dug deep and come up empty as to why I would avoid updating. Maybe I just missed the “roid rage” that I got from chemo, I was usually “roiding” when I updated the blog? Oh no, writer’s block due to lack of steroids! Ha.

So, allow me to update –  we’ve stopped chemo. It was a hell of a birthday present! On my birthday, I had my last treatment. Why? Well, it turns out the neuropathy from the chemotherapy was not allowing me to feel my toes or fingers anymore. Hmm, not a big deal right? Well, not until you want to walk, write, type, cook, clean, etc. It turns out you really need to feel the tips of your fingers and your toes. Ahh, the little things we take for granted. Will it come back? We hope so. But – in the end it just didn’t seem to make sense to risk more damage for limited “shrinkage”. The surgeon at UW-Madison agreed, the trade off just wasn’t worth it.

Since that decision was made, I’ve just been riding it out. Taking the past three weeks to let my good ole’ white blood cells get back up to par for surgery. Allowing my immune system to get back in fighting form. And loving the heck out of a chemo-free schedule! Watching the kids football games and practices. Did I mention how much I totally dig fall hat season? Yep – I fit right in on the sidelines these days with my fancy array of stylish winter hats! Ha. Alas, just like everyone else. Funny how you spend your life trying to be an “individual” going rogue in all sorts of strange fashion trends (big hair, short hair, stirrup pants, overalls, etc.) and then cancer rears it’s face and your bald among the “hair-rich” and all you desperately want is to be like everyone else. It isn’t just the physical either. Living with metastatic breast cancer always has one feeling like they don’t quite fit in, it’s a very strange ‘in-between’. I’ve always enjoyed being a bit of a renegade but this is ridiculous!

Today would have been my last chemo (Oct. 6th) but instead it is two days pre-surgery. My husband and I will head down to UW-Madison on Thursday for surgery. They will remove the cancerous lymph nodes in my left side. The surgery is expected to be routine and they’ve warned me I may have to stay a night. I would love to get home the same day but we shall see. One of my besties, the lovely Mrs. K has agreed to “herd” my children and hold down the fort here at home until we get back. I am so grateful to have friends that are willing to do this. It was so important to me that the kiddos have the opportunity to be at their house while we are gone. This is not a big surgery, but they worry and it’s a school night – I feel so blessed that they will at least have their own beds to sleep in at night.

Recovery should be fairly easy, I say SHOULD (hate to jinx my sorry know-it-all self). I will come home with a drain for about 10 days but we’ve already dealt with that on the right side just about five years ago!  Hopefully, my lovely hubs can handle maintenance of said drain as well as he did the first time:) I think I am most anxious about the pathology of these nodes. I am really curious to hear what they find. I am assuming it will be the same as the biopsy but I am wondering if a bigger research hospital will do more with the nodes? After a good solid month or so of recovery we will head on to radiation. The lovely Dr. G is thinking about 6 weeks of daily radiation and then, well, then we will see.

Until then, I can’t even say how thankful I am for all the love and support around me and my family. We certainly feel it. And I’d say – I am just going to lift my feet and let this journey take me where it takes me but…I can’t feel my damn feet? Ha.

The fog is lifting

Fog is liftingIt would seem after five months of treatment the fog is beginning to lift a bit, perhaps I should be more cautious and just say loosen up a bit? This photo reminds me of the last few months. Step to the edge and just a fog stands out there, no firm answers as to where the water or trees start or end. That is very much how treatment has felt. No firm answer as to where the chemo, radiation, surgery begins or ends?

Answers and a solid treatment schedule moving forward directly impact my confidence as a cancer patient. I am so willing to “lift my feet” and go along for the treatment plan but I have to know where the plan is taking me. Last week (#11 of 16 total chemotherapy treatments), I met with Dr. G and laid on him a ridiculous flurry of questions. He seemed to feel my anxiety rising. So, he was kind enough to fast track some items. The last scan had showed no shrinkage? Yikes. That had been weighing on me. So, Dr. G ordered a CT for this week. We also looked at the calendar and made a plan to get into Madison for surgery as soon as we can following my last chemo (Oct. 6). Dr. G also felt I should get down there now and do my consult with the surgeon, the lovely Dr. W. We put together a timetable for radiation. It was glorious leaving his office having a plan.

The “glorious” part was halted as soon as I got in my “chair” for treatment. Ahh, but alas silver linings – my weekly pre-med Benadryl buzz wasn’t far behind. I’m sure my nurses have a good time giggling at my slurring, ridiculously buzzed antics!

So, this week’s chemo was yesterday and included a pre-treatment CT, which the results were read to me within the hour. And for the first time since May I heard some really good news, shrinkage! Yes, we see a little shrinkage, so the cancer is FINALLY responding to the chemotherapy. Hallelujah! I must insert a little disclaimer here – Dr. G was convinced all along the treatment was working and that my body was just delaying clearing the dead cancer cells. He went to the wall on this and felt strongly when he was sharing his thoughts on my case to the UW-Madison team. It was that very day that I heard the birthdate next to me in the chemo room 1-14-82, my brother Joe’s birthdate – that I knew I had made the right choice to stick with Dr. G for the course. Thanks Joe and Dr. G!

For me, it means it’s all worth it! The down days, the bald summer, the sick days, the sleepless nights. All worth it. And some guardian angel action with me as well. It’s strange how guilt and sheer elation can take hold of you all at once. There’s a part of me that wonders, “Why me? Why am I getting a chance to fight this thing when so many of my family members never had a chance?” And on the other hand I am elated that it is working! I am so lucky. How do I keep getting so lucky?

Blessed with lucky results, incredible support, encouraging friends and family all around and an incredible medical team always with me through every step. Thank you for the blessings all.

So for now, I am going to ride this luck out. Enjoy that the kids are back in school, football season is back and most importantly I am just going to “lift my feet”.