Those first few months after my mom died in 2009, I remember begging for a sign, any kind of sign. The same absolute desperation gripped me after my dad died and especially after my brother Joe left this world so abruptly. That absolute empty desperation that gripped me is a feeling that I will never completely shake. I remember feeling downright pissed that I hadn’t received signs. It was months upon months that I was angry, disgruntled, bitter and questioning my faith in ways I never thought possible.
It took me many, many months – hell, if I am being honest, it took years for this feeling to lighten. And the reason it lightened was so “by chance”. It was a complete off-the-cuff remark by a friend, who told me perhaps there were signs all around me, but I was too entrenched in grief to see them. Huh? At the time, in a very annoyed tone, I thanked that friend for their unsolicited damn advice and moved through grief with anger, rage, sadness, etc..Then one day, like magic really, strange coincidences were all around me. Maybe these “coincidences” were all around me all along and my eyes were finally ready to see them? Maybe I was legitimately losing it? Either way, I totally owed that friend a real apology!
That day was about two years ago. Since then, there are too many times to count when my breathe has left me, tears have welled up in my eyes and I have gone completely numb because one of these “signs” has reached out and smacked me right upside the head! Lately, these signs have been a bit more abundant as I look forward to a solo odyssey that I wouldn’t have attempted until recently.
The beginning of this “string of signs” laid itself out in front of me a little less than a month ago. As I was awaiting my monthly treatment, a little more nervous than usual (I chalk up the nerves to a few unexplained symptoms coupled with an upcoming trip that simply can’t be canceled). So, there I was sitting in my oncologist’s office preparing to have my port accessed. A nurse I didn’t know came in and methodically laid out all of her instruments before me as she got ready to access my port. As I sat there I saw on the side of her wrist a tattoo of the very Celtic Love Knot that hangs around my neck. Tears welled up in my eyes as I looked down at it. Naturally, the poor nurse saw my reaction and was alarmed that something was wrong. I asked her about the tattoo and she said it “was a family thing”. Huh. I was feeling dizzy as I recalled my own sterling silver knot that my mom tirelessly researched and shopped as she lay dying. This knot that hangs so proudly around my neck was my mom’s parting gift to me and my sister. Every time a petscan, catscan or MRI demands I take it off, I feel a little part of me cringe. What are the chances that the nurse drawing my port, on this particularly worrisome treatment day, would display the very same Celtic Love Knot? I took a deep breathe as she filled vile after vile of my blood, there it was – a sign. I felt my shoulders fall away from ears, where they had gone in an attempt to harness the worry I was feeling. With each vile I grew a little more at ease, knowing my mom, good old “Lorac” was with me. Everything after that, would be okay because I knew she was there, she was right beside me.
Maybe a week later, I reached out to one of my brother’s friends whose mom appeared to be having some type of medical situation, in which I didn’t know the specifics. I wanted to let her know, I was sending love her way and if she needed anything to give me a shout. Since my brother’s death, many of these relationships that were really maintained through him have fallen a bit silent. Or sometimes gotten caught in a tangle between myself and my other siblings. But, the spring after my brother Joe died this particular friend, the lovely Ms. M and I found ourselves on the same beach at the same time over a thousand miles away from home. Her generous spirit was so happy to meet my family and I for a lunch date on that beach. Ms. M was with her mom and greeted us with nothing but love, that was three years ago. I should add, I will be forever grateful that she followed through and met us for lunch. It would have been so much easier for her to avoid the whole situation. Instead we had this lovely lunch on the beach and we had the pleasure of meeting her mom as well. Fast forward to today, her mom wasn’t doing well, she had been given a cancer diagnosis and she was in a nursing facility recovering from a surgery. Ms. M responded to me and let me know a visit would be great. I gathered up some goodies for her mom and was really looking forward to seeing her.
For some very strange reason, I hadn’t really looked up the address of the nursing facility. I blame my lack of planning on the ease of technology today! I had simply planned to plug in the address and roll, which I did. It was only as I made a right and then another, that I realized I would be headed to the very same facility that my brother, Joe, died at (his was the hospice portion, therefore had a different name). The very last time that I pulled into this facility was the last time I saw Joe alive, it was our last night, our last conversation, our last laugh, our last cry, our last. I had spent three years avoiding these streets, this very route had been on my own personal “no fly zone” and here I found myself with no other option but to pull in. I felt a slight panic attack coming on as I turned into the facility. The radio in the car was playing and as soon as I pulled in and slowly drove by the building that housed my brother in his final hours, tears were flowing at this point, but “Wish You Were Here” by Pink Floyd came on the radio. Oh my Joe, oh man, my Joe – there he was. Just when I desperately needed that nudge, why there he was. I could again feel those shoulders slide down from my ears, a few more tears freely escaped but I felt a sense of utter calm, there he was, sending me a sign. Damn it, I wish he could be here and he could just turn on the damn radio next to me and play a song! But, I shall take his presence any way I can get it these days. Beggers can’t be choosers. At this very moment I knew that I was in the right place, at the right time with a sense of purpose.
As I walked into the facility instead of dread, I felt a grateful, sad heart. I looked around at the familiar carpet, lighting, nurses station, etc..the memories of my dying brother flooded me. And then, to my complete shock, the memories of the warmth and the compassion shown to us as he lay there in his final days. I don’t know that I could have walked into this situation at any other time and felt what I felt on this day. I am not sure if it was the song? If it was fact that the lovely Ms. M and her mom had been brought into my life by Joe or if it was the perfect amount of time in which bitterness and rage had succumbed to sadness and sorrow? Maybe it was the perfect combination of all those things? Maybe it was just time that my experience gave way to spread some love again, a little light. While I sat down and visited with Ms. M’s incredible mother, I felt a sense of calm wash over me. And then I felt a sense of reassurance that Ms. M’s mom is gonna make it outta here. This lady with this big personality, she and I we were meant to share this moment of hope. I was certain that my brother was right beside me too.
As I left that night, I got in my car and for the first time since his death, I cried loudly, completely unashamed, exposed and vulnerable I cried (probably a real ugly cry, ha!) and yet, somehow, I knew he was right next to me. In life he always knew how to pick me up and even in death, here he was, still right beside me picking me up.
So as I was handed this opportunity for a solo odyssey to another land I’ve become aware that I am never really “solo” these days. I shall embark with a grateful heart and a healthy dose of fearlessness tempered with a ton of love and support from my family and friends, and with an eye out for all the signs around me.
I can’t thank this village – in this world and in another world – enough for all the love and support they have shown me and continue to show me every single day. Thanks for picking me up again and again.
This weekend as we celebrated the hubs birthday, I was reminded of a blog entry from quite some time ago. The hubs and I were walking this weekend and talking, after asking him what he wanted to do for his “Birthday Weekend” several times, he paused and said, “I don’t know, whatever comes”. His response spurred a conversation on enjoying the moment, this moment and it was here I was reminded of this blog entry from 2015 and lifting my feet in the lazy river of life.
Five years and I was SO CLOSE
Well, that five years, that milestone I have been holding my breathe for, it’s going to have to remain illusive for just a bit longer.
A couple of weeks ago, my regularly scheduled CT scan showed everything looking pretty good. And my new oncologist Dr. G seemed encouraged. As he looked over the scan results once, then twice, then three times he looked at me and said, “any pains? Anything unusual? ” I told him I thought I felt something in my left breast while on vacation, but I wasn’t sure. He sort of sat up to attention at this point. ( I have only been with Dr. G since Dr.B’s retirement in December so I am still learning his “tells”. ) He scoured over the CT pictures again and decided it was strange that I had enlarged lymph nodes on my left side under my left arm, near the breast. At this point the radiologist had not read my results yet. Dr. G reads the film which Dr. B never did, so this is a whole new process to me. It was then that Dr. G made the call to investigate the lymph nodes “just in case”. He ordered an ultrasound-guided biopsy. Naturally, my biopsy was on a Thursday (they always are!) which means waiting through a long weekend until Monday to get the results.
Monday came and so did a phone call just before lunch, well Dr.G was personally calling me how nice? Not-so-much, he was calling to let me know that yes indeed the lymph nodes show cancer. ****! So, close – I was literally 5 short months away from that 5 year mark!
I panicked, I cried, I got mad as hell and then as quickly as it all hit me I found my “Zen”. I found my sweet spot that says, we will just do it all over again. We will pick ourselves up and we will move forward. I say “we” because the kicking, screaming, crying that whole thing, well it was a group event. Yes, with the help of some kick ass friends and family all those lovely phases were worked out. I mourned the loss of that 5 year cancerversary, accepted the fact that the cancer was back and tried to just move forward.
Ah yes forward, forward would mean dozens of invasive, sometimes completely uncomfortable doctor appointments, procedures and diagnostics. Certainly, all totally worth dealing with for more days with my family and friends. The past 10 days have included a PETscan, CT scan, a breast biopsy, a mammogram, an MRI, a colonoscopy, an echocardiogram and waiting for dozens of different results and pathology reports. Frankly, after all this I am shocked I am not walking around in a halo of green radioactivity.
The worst part? Oh – it’s the waiting for sure. Does it suck that this stupid cancer is back? Heck yeah. But, I must admit that I am just so grateful that I have the opportunity to give a treatment plan a shot. My dad and brother were never given that opportunity.
Now, it’s the waiting, the wondering, the “googling” medical conditions. Good Lord, the googling! I need to stop maddening myself! I can’t thank my lovely husband and friends enough for putting up with my insanity. Soon, Dr. G will have a plan in place and I can commit myself to said plan.
It really reminds me of my first run at hard chemo back in 2010/2011. The hubs and I decided the kids could use a break and so could we, it was winter time and we decided a trip to an indoor waterpark in the Dells would be just what the doc ordered. Several things were learned from this experience – 1. Being a bald woman in a waterpark will illicit stares and gawking – making said bald woman hyperaware of her cancer. But – the more positive takeaway was simple – 2. When on a tube in the lazy river just pick up your feet! Yes, so simple, stop trying to fight it, pick up those feet and let the lazy river take you. I feel treatment is my lazy river, once I have a path I am completely willing to just “pick up my feet”.
PS-while picking up my feet, I have decided to start a new blog at http://www.aterminalcaseofhope.com
It was incredibly painful to log on to carepages.com and see those three carepages I managed for loved ones I lost. I thought a fresh start this time around?
I’ve really missed blogging.
To be honest, I’ve been thinking about this blog post for awhile now. And ever since it has been on my mind, I have found the very subject to be cropping up in various areas of my life.
I have decided that I have officially outlived my “sell by” date and my “expiration” date at this point. It turns out I am falling apart – because no one ever thought I’d live this long! They’ve literally spent the past 6 years of my life patching me up with many of those silly, stupid raft patches you get with your fancy inflatables. The holes are coming to the surface, water is spitting through those silly patches!
This situation smacked me, quite literally, in the face when I felt a cavity brewing. Ahh, my damn Kryptonite – the dentist! I laughed in the face of the dentist as he cleared me for my initial chemo, then more chemo and then monthly infusions (okay, I guess I shouldn’t be laughing at a guy who’s helping to clear me for all that?). Anyhow – I giggled the last time I was there secretly plotting the rest of my days totally dental drill free! (This may sound morbid but remember my days have been numbered several times over the course of different treatments.) Then, about a month ago the pain and discomfort coupled with a ridiculous amount of dentist commercials during early morning news shows – had me seriously considering sedation dentistry. Let’s just leave it at that. I thought my days of cavities were over – and no such luck.
Then, on a walk with my dear pal, The Lovely Mrs. N, we walked by our currently under construction neighborhood pool and I casually mentioned to her – I never really looked at the picture of what our completed pool was going to look like. I was met with a “Really? Why Not”. I very nonchalantly, right in step with her said, “I never thought I’d live to see that pool done.” Silence. My lovely Mrs. N is about a foot taller than me and she looked down at me with a shocked look saying, “you can’t think like that!” Ha. Well, I do and I did and it’s clearly gonna get me into some trouble up ahead! (I am kind of feeling like a kid who didn’t do his homework in anticipation of a snow day.)
Just a month or so later – my left knee with it’s torn ACL started making trouble. Yep, back in 2014 – I decided to take a death-defying skid across my kitchen in a wet boot. Bam – retorn left ACL, a completely broken finger and fractured right ankle. I went through the holiday season looking pretty pathetic. Yep – I had crutches for both legs and I couldn’t wrap my broken finger around the damn things! It was all very sad. As soon as an orthopedic took a look at it, he was certain surgery was in my future. But, oh wait, there’s always that curious part on my medical chart, you know the one that says I have terminal cancer. They would really need to xray, MRI, test and retest to see if this knee REALLY needed to be dealt with. Turns out, it did. As I scrubbed up for surgery, I had this tiny little situation of a “spot” on my petscans at the time. It turned out days before this surgery, I learned I was scrubbing in for a permanent port because we needed to restart the hard chemotherapy. The orthopedic yielded to the oncologist (rightfully so) and I was given a cortisone shot to help get me through. That was 2015 and it turns out – this knee is needing some love. But, I really never thought I’d ever have to deal with it. The cortisone could get me through.
Then about two weeks ago – my right ankle started throbbing! I am thinking it is acting up because I am depending on it too much because of the left knee! Again, I never really thought twice about this stuff. And it seems it’s coming up in spades at this point.
The hubs and I have revisited mileage on the car and I laughed – nope I am done with car payments! Ha. The hubs kind of took a step back with wide eyes. Oh, I caught myself – well I just kind of figured I’d be dead before another car payment was needed. And then you wouldn’t need a second car either? Yikes….did that really just come out of my mouth? To say he looked back at me a little concerned, well that’s an understatement! Over the past few years, new clothes? Ehh. Who needs them, I’m on my way out. New coats, boots, etc…let’s do something awesome with that chunk of change because I won’t need that! Ha. Turns out, I may need a few things before I am done?
And these are just the big things. Back in 2010 when I was diagnosed and 1-3 years was a pretty commonplace life expectancy for me, I made the conscious decision to simplify. To make the very best of what I had left. To spend my days and nights loving my kids, my family, my friends. Embracing everything I could because you only get one life. I was going to spend a whole lot of time living in the beautiful, never replaceable NOW. (I must add this is long before mindfulness was a common practice! This was my own little version of “Zen”. )
In retrospect – I may have taken this just a wee bit too far. I mean, the Columbia jacket from high school – it’s really lived way, way beyond the expiration date!
Let’s be clear: I am crazy-over-the-moon humbled that for some unknown reason I get to keep being here (I have had to say goodbye to so many loved ones who this disease took too quickly, too violently, completely unfairly). And many may find my thought process morbid or dark. I must respond and say, until someone tells you that you are probably not going to live 3 more years – that shit stays with you! There’s no un-ringing that bell. You better believe that in every single thing I do, every single activity that thought is there. It is always there. There is no way to shake that thought. I try to kind of coddle that thought today. Let it have its’ space in my heart and in my head – and allow it to kind of catapult me into trying and doing things I would have never done had I not been given an expiration date.
As I sit here to write this blog post, I am conflicted. On the one hand – I am scared to put my thoughts down for mass consumption as I am sure I am somewhat asking for some hate mail (but hey, the haters gonna hate). Yet, on the other hand I feel I am being compelled to share my perspective as my social media feeds have already started to fill with the pink haters.
I believe I am able to offer a unique perspective as I have been living with Stage IV breast cancer for almost six years. Nov. 1st will mark a day that I never thought possible – six years since I was told that I have terminal cancer. I was 32-years-old with three small kids at that moment. I am grateful. I am grateful that research has provided options. I am grateful for pink. I know several of my uncles, my brother, my mom and my dad would’ve appreciated and been grateful for the type of time that I have been given in the face of a terminal cancer. Sadly, they are not here to express that because they did not have pink. They did not have a month dedicated to the horrific cancer that took each and every one of their lives. I hope this offers a little bit of my perspective.
It is not even October yet and the “Pinktober” hate is building. I need to start by explaining – over the past six years I have had the privilege of meeting some of the most brave, amazing, compassionate and determined women living with metastatic breast cancer. That’s stage IV terminal cancer. They are all living in varying degrees of grief and illness every day. They are all in treatment while working jobs, raising families and living with knowing that this monkey will always be on their back. They will bear the burden of marching forward while mourning the pre-cancer life they led. These women have provided me with so much inspiration I can’t even begin to articulate the amazing grace I have witnessed. (Right now I am thinking of my beautiful sister in Syracuse, the one and only Mrs. L. She has changed my life with her grit and determination as she has endured mind numbing treatments all to share more time with her beautiful son and incredible husband.)
So, as the “pinking” of a month rolls around and I begin to read the absolute hate regarding Komen, Pink, Charity walks and so forth – I find myself tensing. I find myself becoming a bit defensive of all things PINK. Now – I understand there are dozens of companies and even charitable organizations that slap pink on products to sell and claim they are raising money for breast cancer, all the while contributing pennies to questionable organizations, sometimes not even that. But, does that mean no good comes from Pink? Does it mean that no research funds for breast cancer are raised during the month? Does it mean NO compassion, no understanding for breast cancer or metastatic breast cancer comes during October? Does it mean pink is only for my non-terminal breast cancer sisters? Geez, perhaps I am the idiot here? For the past six years, I have been operating under the idea that October and the pinking of a month was – at the very least – opening up a conversation. It was allowing me an opportunity to share my thoughts on breast cancer, on terminal breast cancer. But, I also trust that my friends, my family, my neighbors and my co-workers are intelligent enough to look into different organizations in which they are going to donate to (by the way many other cancers and diseases are in desperate need of this type of visibility). After all, this is their hard earned money. Is it my job to police and shame them for their compassion? For their pink products? For their big hearts? I just want to be clear here – there are hundreds of other cancers and diseases that are in desperate need of this type of research funding, visibility, compassion and understanding. Many of these diseases and cancers we can’t even pronounce and we certainly have no idea what the symptoms or screening methods are, or how to contain the disease. While I respect my fellow Stage IV BC patients, I am also disappointed that they aren’t seeing the value in the type of visibility that breast cancer secures every October. I would like to think that many of the medications and treatments that have kept me alive gained traction and funding from Pinktober. Yes, I do believe that grant dollars and research funds are increased when an entire month is dedicated to a disease. Of course, the sheer number of people diagnosed with breast cancer also helps secure these funds. But, I think it would be ignorant to suggest that public relations and visibility has nothing to do with research dollars garnered. And many of these breast cancer treatments have now been effective in treating other cancers.
I am all about letting people know, there are some uncouth, low down, dirty organizations out there, buyer beware or as my dad used to say, “Caveat Emptor”. Make good decisions. Understand where your charitable contributions are going and if you want to buy a pair of pink gym shoes, in which none of the funds are supporting a breast cancer charity – guess what? I will NOT shame you! I will NOT judge you. I will instead be appreciative that you want to show your support. Because every day I am among the living I feel a pull, a sense of isolation that I am here and I am not like everyone else. I feel a sense of jealousy that you are living without this monkey. And for a month every year, you all choose to wear pink, buy pink, take part in charity walks (many of which DO benefit my treatments) and for a month every year I feel you! I feel your love and support, I see it. Ahh – sweet solidarity! You, you are reaching out and desperately trying to connect. To connect with me, to the mother you lost or the sister that is in chemotherapy or the friend that you just buried. You ARE aware that breast cancer is more than pink, you are aware that we are dying of this disease and you just want to show your support.
So next time you see pink – a pink blender, a pink pumpkin, a pink bracelet – instead of seeing hate, instead of seeing capitalism look closer and see love, compassion and that human need to connect. Look again and see support. See what’s right with this instead of what is wrong.
I know this weekend I am going to go to my son’s football game and I am going to see all that love in those pink gloves he wears, he wears those pink gloves each and every game, October or not. He wears those gloves because he has seen me bald and burnt from radiation, he has seen me bed-ridden and defeated. This is his way of saying he is with me. He’s got my back. Those gloves aren’t about October or commercialism or greed, those gloves are all about love and support.
And for my loved ones that I have lost to another cancer, I would have worn any color, I would have marched in any walk to let them know – I love you and I got your back.
Apples, pumpkins, football, leaves falling, autumn has officially arrived in our area. And while that cool breeze signals a return to a schedule, it also signals a time of grief and sadness in our house.
In late August, my two girls and I had a chance to head up to the lake, just the three of us. Without the boys there we reveled in our last Sunday night swim, the deafening silence on the lake a reminder that fall was upon us. If the quiet didn’t remind us, the way the sun sat in the sky, just a bit off kilter from where the summer sun beats down upon us, was a certainty that seasons, they were a changing. In late August, the sun is there but the intensity less and with a bit of a cool breeze, one that makes you feel the change of season coming. The girls and I sat at the end of the pier on this day, six feet lined up, toes lazily floating and we looked forward and all seemed to notice how the water looked a bit darker. Yes, we all agreed the water was a deeper blue than in summertime when the humidity hangs over the lake like a familiar hug. And what was that? Ahh, the breeze is just enough that a sweatshirt or a towel was needed for each of us. We talked about the end being near. No worries, the end of course, was the end of the summer season.
And eventually, the conversation turned to this time of year, this time gently reminding us of when Grandpa died here at this very house on the lake. As the girls chatted about birds, colors of boat covers, etc…I couldn’t help but allow my mind to wander. Just three years ago I sat at the edge of this pier, despondent as my dad was laying in this very house dying. It was less than thirty days from diagnosis (cholangiocarcinoma) to death. And here was my dad laying, dying in the same room, in the same house, in the same spot as my mom died just four years prior. And it was myself and three kids along with two of my brothers, who were there as caretakers in those swift three weeks. At the time, it felt suffocating and surreal. Daily hospice nurses coming and going, learning how to use medical equipment, to dispense all the medications, to listen and bottle up all those last nuggets of wisdom that my dad was about to impart. All this chaos with this beauty right outside the door. This time of year will always remind me of my dad. That August of 2013 when he was diagnosed was one for the record books. Every day, storms, tornadoes and an unrelenting heat. In early September, the day after my dad died, I walked outside to go get the mail up the driveway and there was fall, there was that cool breeze, those few early leaves letting go from their branches. It was like everything changed overnight. Everything.
The weeks that followed were a blur. Planning, memorial, bills, photos, thank you notes. All a blur until my birthday, the day after the memorial. My brother Joe was staying with us, he had been there to help throughout dad’s hospice care and now he was at our house. One last hurrah before he headed home out of state. He rolled into our kitchen all smiles with a huge pile of “Birthday Nachos”! Ha. Birthday nachos. We ate the heck out of them at our kitchen table. This would be the last time I would sit with my brother at my kitchen table eating birthday nachos or any nachos for that matter. Days after our birthday nachos we found out that my brother, Joe, just 31 years old, was dying of pancreatic cancer. It was late September when my youngest brother and I headed out of state to bring my brother Joe back home to die. We spent too many days and nights in a tiny, dormitory room at a huge research hospital waiting, praying, pleading that the doctors were wrong. When all the tests were done, all the medications administered we made the long trek home with Joe just in time for the last weekend of September. The incomparable oncologist Dr. B promised Joe a room with a view at our local hospital – and he did not disappoint. The view out his window was an extraordinary array of reds, yellows, oranges. Again, here we were, all this chaos with so much beauty right outside the door.
Just 52 days, 52 days from the day my dad died to the day my little brother died. 52 days of hospice nurses, medications, “arrangements”, medical appointments, prayers, pleading and begging. 52 days of watching the same symptoms grip my brother, the very same tell tale signs that his death was imminent. How did I know? I just saw it, I didn’t even have time to let it digest.
Just a day before Joe’s Memorial Service, was a day that I thought I would be celebrating. I thought I would be celebrating with my Dad and my brothers, my husband, kids and friends. It was my third year anniversary of being diagnosed with stage iv breast cancer. When I was diagnosed, I hadn’t been given real good numbers on me actually surviving to three years. But, here I was. I remember feeling angry. It felt wrong to celebrate my life when I had just spent 52 days watching ones I loved, die. Die with no warning. They didn’t get a chance to try to live with disease. The cancer for them was like a freight train, a freight train with no warning whistle.
So, today when I feel that change coming. When I feel that little nip in the air, that first leaf turning and letting go, that first football game, a sadness grips me. For as much as I love that first cool, crisp breeze, I can’t help but brace for the change that could be coming. All that change in just 52 days.
Despite drooling, snoring and generally being a hot mess throughout my scan week, I lived to tell!
On Friday the hubs and I had the pleasure of meeting with my brand new cancer team. And I have myself a brand new Dr. B. Perhaps I shall call him Dr. B2? Because despite my utter confidence in Dr. B2, no one can replace my beloved, retired Dr. B. Anyway, Dr. B2 took a good look at my Petscan and my brain MRI and good news-my brain appears “normal”. (I know there are quite a few of my friends and family that would beg to differ! Ha.)
The Petscan showed overall stability. Ahh, I never thought I’d be so thankful to be unremarkable! However, it looks like there are a couple of spots we need to investigate. A ct scan is scheduled for early August, we shall see. If it warrants a biopsy then we will go there. For now-I’m staying right here, enjoying some more sweet summertime and nursing my monthly injection side effects.
Naturally-I’ve begun “googling” and that has not been good. So, I’m really going to try to give Dr. Google and Colombo a little hiatus! Dr. B2 has this, I know it.
It’s been awhile since I last posted. And I have since finished another five weeks of daily radiation and then really just tried my best to assimilate. Join the rest of the regularly programmed viewing special, Summertime. Oh how I love summertime. Sweet summertime always does me right. Sucking in that Vitamin D, splashing in the lake with the kiddos. Oh, that feeling of utter weightlessness when summersaulting through the water. If we could only be weightless like that more often. That feeling of just floating, only hearing the boat motors under the surface and seeing the bright sun above you. The world kinda falls away for a moment. All you need to do is pop the surface and you realize you are smack in the middle of utter chaos. Floaties, footballs, Marco Polo, paddle boards. You can’t help but smile. Ah, sweet summertime. Some of my best memories fall between June and September. And so many surround that sweet little lake, my mom called it “Our Golden Pond”.
I thought sweet summertime was taking a little hiatus this week as “Scanxiety” has taken over. It’s really kind of strange, I am six years into metastatic breast cancer and this whole scan thing I can’t shake. I almost feel it is the true purgatory that I was once told about. For days on end I literally can’t decide if I am living or dying? This week I go back and forth. Deep down, I feel good but it’s the idea, the possibility that your whole life could change in a few days. Everything. I haven’t been immune to those changes either. And when they come they slap you right upside the head because there you sit starry eyed thinking, all is good and boom! Wait what is this, more tests, scanxiety continues. It’s a vicious cycle. A lonely one. You see where your mind can take you!
So today, bright and early I marched myself in for what is probably one of my least favorite tests (so far) a brain MRI. I took my prescribed MRI meds (my chill pills) and was ready. The MRI was quick and comfortable. They’ve come a long way since the Hannibal Lector mask I once wore. In and out. Now I wait, next up – a PETSCAN. Ahh, the joys of the PET. I think the scan itself is a breeze. It’s the limited complex carb/ sugar diet that leads up to it for DAYS. Normally not a big deal but throw in some scanxiety and three kiddos with healthy appetites and well, fill in the blanks.
But, if I am being really honest it’s the 90 minute wait in a dark quiet room that precedes the PET that will get you. Oh yes, 90 minutes with your thoughts, 90 minutes. No movement, no music, no reading, no light, no nothing. However, today was my lucky day. It turns out sweet summertime was NOT taking a hiatus for these scans and instead had a hand in the perfect storm…in that tiny little room.
I rolled in there, laid on the bed, got my radioactive shot of sugar, a warm blanket came and the lights went out. I woke up 86 minutes later face down, drooling, dazed from a sound asleep! I still can’t decide whether or not my own snoring or a beeping in the hallway was the cause for my very spastic wake up! Holy crap. I woke up totally discombobulated! Didn’t know what the hell was going on. Thank goodness for my early “momming” years where these types of wake ups were pretty commonplace. Ha. I am also thinking my chill pill helped? And the fact that I hadn’t slept a wink last night? Either way, it had to be a REALLY good show for the techs! What a mess. Face down, drooling on a gurnee – nice moves Kate, you are really rocking that! Ha.
Once they peeled me out of that room I was off to the rotating table of fun through the PET. I had a hilarious smirk on my face through the whole thing. I couldn’t help but giggle at points. My Gosh, how were these techs keeping a straight face? I mean I was out like a light. I gotta say today will go down as my greatest PET yet. Easy peasy. Ha.
Sweet Summertime, she never disappoints. You can go under and muffle the joy around you, but you always come up to the chaos with a smile on your face and in this case, their faces as well! Ha.
I’ll keep you updated on the results – for now – I am quite certain I am still living!
A couple of weeks ago, I had a moment. A moment that helped me understand where I am. (Not like Where’s Waldo, a different space altogether.)
It was a Tuesday or maybe a Thursday night (I can thank my many rounds of chemo for my complete lack of short term memory!) Anyway, I digress. It was a weeknight and my oldest son had a baseball game. It was touch and go as far as weather that night. And usually, the hubs takes him to the games early but for some reason, I volunteered. OK – If I am being really honest here, I thought to myself better to sit in the car than do dinner with the girls? (Exhaustion due to daily radiation treatments was rearing it’s ugly head!) So, we pulled up to the ball park only to have lightening and thunder abound immediately. We were told the teams were “waiting it out”. So, with the air conditioning blowing and me and my little man in the front seat – small talk began. It didn’t take long before we were laughing our butts off. Whether it was a very funny fart joke, an oh, ohh we need to find out who sings this song or just our summer dream list – we sat comfortably. And 15 minutes into it, another lightening strike and another 15 minute delay. And more fart jokes, maybe even a little talk of crop dusting too, a few more good songs and for me a genuine love of hanging with my oldest son. We had no where to be but here, right now. Had the skies not opened we would have missed out on this chance to just “be”. Sometimes I forget what awesome little humans the hubs and I have. We have been blessed.
The game never did happen that night but I got to have that illusive one on one time with my oldest son. Now here is where living with cancer mom and regular mom differ – as we drove home in the back of my mind all I could think was, “When I am not here, will he remember this time?” Will this stick in his memory? Will he remember the songs or the jokes with a smile? As a mom living with metastatic breast cancer, I sometimes feel as though I am “shooting” my life from afar. That I am hurrying up and making as many memories as possible, because that other shoe, well it’s going to fall at some point.
“No rest for the weary,” as my mom used to say. Sometimes when I am jonesing for a nap because the most recent treatments have got me begging for mercy – I can’t help but think, “No time for a nap Mama, buck up”. Or when my arms are swelling up like balloons with a heavy ache called lymphedema and it’s time to plant the garden, “Buck up lady, you only have so much time”. Or when it is a sunny, beautiful day at the lake and my energy is zapped to a point where getting off the couch would be a minor miracle, “Come on Mama, get it together”. That type of pressure is too much to carry. It’s exhausting, debilitating. And well, it’s ok to NOT be ok! And there’s no perfect way to shoot this life, hell, if there was I wouldn’t be living with cancer right now! When I think back on my best times with my mom, my dad and my brother – they were insanely imperfect. They were the unexpected s**t shows that created the best memories and the easiest laughs. Now that they are all gone – it is all I have. And all I can think is, gosh I hope they didn’t feel that pressure – because it sucks!
So, for the first time in a really long time, waiting out the rain in our little red car, we had no place to be. It was okay for me to sit there and laugh and take in my oldest human’s awesome, funny, silly soul. There was no disappointment in myself that I couldn’t clean this or do that. We were “here” and that was A-OK. It was an incredible lesson for me.
Don’t get me wrong, I am not one of those overly optimistic people who will say, “cancer came into my life and caused all this good”. It did not. And the people the disease has taken from me and my family has been devastating. But – I can’t help but think would “pre cancer Kate” appreciate these very small things? Would she even notice? Or would she be so wrapped up in the day-to-day rat race that these items wouldn’t matter at all? Or maybe pre-cancer me would’ve become enlightened by now? Found my “Zen”? That whole “Butterfly effect” thing is a crazy worm hole. Maybe things happen for a reason? And I’m not talking about the cancer either – I am talking about the thunder and lightening that day.
I 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!