New Yorker essay worth a read, but grab some tissue . . .

10 Apr

I found this essay last night and thought I would share it. It is written by a son, on the loss of his father. Really beautiful. The essay is called: “Nobody’s Son” by Mark Slouka.

You can find it here:

Nobody’s Son

 

Goodbye my friend

10 Apr

I don’t know what to say. I lost a dear, sweet friend today. We grew up together. In fact I don’t remember a day of my life that I did not know her . . . when I was little we were at each other’s houses every day. As adults we remained friends. Last year my Dad played the piano at her birthday party – it was a great party. I am so glad that we all gathered that day, so many people came.

She survived brain cancer as a child. I remember when she went through treatment when we were just kids. She lived cancer free for decades and then it came back this past January. This time there was no treatment for her, only hospice.

She was an amazing person and a true friend. So kind, so generous, such a huge heart. Biggest heart I have ever known. My love goes out to her parents, to her two brothers, to her niece and nephews and to her husband and to everyone who had the privilege to know her.

Rest in peace sweet Sheila. I love you.

Bittersweet . . .

8 Apr

I’ve been working on cleaning things up lately. Lots of sorting through things – like medical records, what to keep, what to shred. Clothes, what to keep, what to donate. For the past few years I have been overwhelmed with quite a bit. Certainly some of that was the post cancer fallout. And, let’s face it, it isn’t like cancer just up and ends one day and you immediately go back to your life. Nope, no way. Although, I would like to believe that and still see it as a goal of mine :)

When I think back on the past several months even – with a surgery not long ago (January) – it is kind of amazing that I am doing what I am doing. I played my first post op gig this past weekend. It didn’t even occur to me until I was just a few hours away from playing my beast of an instrument that maybe it wouldn’t go so well given I only had surgery two months ago. But, it worked out and I had no problems.

I spent my weekend among friends. I enjoyed playing music with a new group and at a new venue. I got in a really great work out today (I am determined to lose this Tamoxifen weight and also determined to get my strength back). I took a walk on the beach this evening and watched a beautiful sunset. I walked home and thought to myself how lucky I am to live here, to be alive and to be well. Life is good.

Some years back there were days where walking was so labored and slow. And, there were days when I could not walk at all. And, there were those days that were plagued with thoughts of death and complete despair. It is quite something to be taking the kind of walks I am taking today. It is quite something.

birdslifeguardtowerbeach

So I came home from my walk and posted a few sunset photos to Facebook (see above). I don’t know if it is the de-cluttering and organizing I am currently taking on, but for the first time I noticed that I had “58 unread messages” on Facebook. How does one not notice that?

I immediately thought: I bet these are from 2009 or 2010 – those lost years. Hmmm. I proceeded to look at those messages and I was about knocked out. Some were the: “hey, checking in to see how you are doing” kind of messages and some were offers of help. I started to cry. Reading through one message after the next. Tears over all of the kindness, concern and simply missed messages. All went unanswered. Although certainly some were from people that I connected with by other means - so they were not technically un-responded to, still, just sad. And, then it got worse. As I read through message after message I started to really feel anxious and worried over what I thought could be there waiting for me, what I thought I could have missed.

And there it was a message from a friend who is now gone. And then another message from her . . .

My heart sank as I clicked on it to read her words. Words I was supposed to read years ago.

She was diagnosed around the same time as me, with a similar diagnosis, we met online and became friends. Not long after completing treatment for early stage breast cancer, she had a recurrence. The cancer came back and this time it was stage IV – metastatic – the kind of breast cancer that kills.

I never saw either of her last two Facebook messages until today. Over two years after her death I am reading her words; and somehow I am devastated and grateful all at once. So happy and grateful to see her words again, even though I never had the opportunity to reply. But feeling her death all over again.

Thankfully it wasn’t my last communication with her – it was just the last communication through Facebook. I missed it, and now I have two messages that I can no longer reply to because she is gone.

That damn chemo fog and treatment roller-coaster took away a lot of days and a lot of focus. I missed out on those messages. Weird. Strange. My heart feels empty and full at the same time and very sad. I am grateful for her words and grateful that I saw them today. Such a gift. But, I am reminded of how much I miss her – not that I needed reminding. I think of her all of the time.

One of the hardest things about cancer is also the best thing about cancer (cuz let’s face it, there are so many “best” things . . . NOT).

Best: the people I have met that I would never have met.

Worst: the people I have lost and will lose.

That is the worst, worst thing ever.

I never would have imagined in a million years that such connections could be forged online. But, when another friend passes away, a friend that I have never even met in person, it is a very real and palpable and deeply felt loss. All of us here in this cancer blogosphere/twitter-sphere/etcetera-sphere know this.

It has been a tough few years for so many. Sigh. We need a cure.

Love and peace,

Lisa

 

 

 

Insomnia

27 Mar

I am tired. Tired of getting so dang tired. And tired of worrying about why I am so tired. It is, well, tiring. And now, as tired as I am, I can’t sleep. I don’t even get that – doesn’t really make sense and yet this is how it is more nights than I care to admit – sleep eludes me on a regular basis.

Yesterday was a busy and productive day. It felt great to get a lot accomplished at work. But, now I am suffering from apparently overdoing it a bit. I am in pain from head to toe and there’s just no way to sleep through that pain. I know that since I have yet to sleep tonight, that pushing through a long (albeit, excitingly productive) day yesterday, essentially will cost me a lot of today. It is almost 4:30 am right now and I may just skip trying to sleep at this point. There is a breakfast place near me that opens right about now, maybe I will head over there and see the sunrise this morning and try to take a nap later on today. Not much of a nap taker, no matter how sleep deprived.

On the upside, I can really hear the ocean right now. Waves crashing loudly . . . such a wonderful sound. And while it is possible to hear the waves at other times of the day, it is definitely the loudest sound right now . . . that is one of the benefits of being awake at this hour . . . there are no sounds competing with the sounds of the sea.

Still, I would rather be sleeping. Oh well, better luck tonight . . .

Update: my parents are doing much better, but still need prayers and assistance. My Mom is back home and my Dad is done with radiation. That is a big improvement as it has been a very long month. I am so grateful they are improving.

Yep, think I will venture over to my little neighborhood breakfast place, then maybe a nap at some point today. I can only hope.

Love and peace,

Lisa

 

Grateful Body Guard

14 Mar BODYGUARD

It has been a pretty tough few weeks, preceded by a fairly tough few months and heck, why not even go further and say those few months have been preceded by some tough years. That would all be true. But, it isn’t how I choose to see it. Even though I am sure if you were to read prior posts that might very well be the impression that you have . . . grim. I do write here to off-gas a bit, yes I do . . . and it helps. It helps me not need to do so much of that in my actual non-online life. If it weren’t for this blog, I probably wouldn’t have any friends left . . . it can’t be cancer talk all the time . . . despite the fact that I feel the physical ramifications from that every day of my life. But, I digress. I am not here today to whine about all that. Instead, I am simply just absolutely grateful.

And, it is gratitude that has brought me to write this evening. So, what’s with the body guard thing? Oh yeah, well, I will get to that in just a bit.

First the tough few weeks and why: both of my parents have been having health issues. My Mom had a fall about three and a half weeks ago and ended up in the hospital. While she is doing better, she is still not home. Meanwhile, my Dad has been going through radiation treatment for skin cancer. Dad finished radiation treatment two days ago! But, both of my parents are having a tough time. Being apart is very difficult and disorienting for them.  There is just so much going on. Daily trips to radiation with my Dad (same place where I had treatment) and then from there to my Mom. The days have been pretty long and challenging. Mom was moved from the hospital to a nursing facility for rehab and for her to get her strength back before hopefully going home soon.  It is tough to navigate for all of us. But it is navigable and both of my parents will get better.

I learned through my own health challenges (hahaha, yes, cancer was challenging) that you need to get in front of things with respect to medical care – whether it is healthcare coverage or quality of care – there is simply better care available if you expect it and come to demand it. So everyday I have been visiting with my Mom (and staying in front of her care) at the facility where she is currently staying and apparently I have earned a nick name there. I am called the body guard.

BODYGUARD

When one of the nurses told me this, I wasn’t quite sure how to take it. But, I ‘ve decided to take it as a compliment. There have been several twists and turns with respect to my Mom’s care . . . days they planned on discharging her even though she was still quite ill, mishaps with medications etc. I have attended several meetings (yes, I am quite sure the staff is all very fond of the “body guard”) and connected a few dots that I won’t get into here . . . but let’s just say that all of that time cancer forced me to spend in hospitals, forced me to read my own blood work  and forced me to connect the dots for myself . . . has paid off.

Squeeky wheel gets the best medical care? Maybe. All I know is that Mom is improving and I am quite grateful for that and my Dad is resting up from radiation treatment and doing well.

Both of my parents are getting better, but both have some challenges still ahead. We all appreciate any prayers and positive thoughts.

Love and peace,

Lisa

 

Thoughts on an upcoming cancerversary . . .

26 Feb IMG_1098

Cancer entered my life five years ago. At the same time, it entered the lives of everyone I knew. Cancer didn’t just happen to me. It happened to my family. It happened to my friends. It happened to people I loved and to people I didn’t even know yet, that I loved. It happened to all of us.

So, now, five years out from that melee all is back to normal . . . right?

No, not exactly. Cancer took things. It took friendships. It altered relationships. It has literally killed friends. It stole skill sets, memories, confidence, strength and robbed me of peace.

It forged relationships that perhaps would not otherwise be while seemingly at the same time destroying others. And as I write these things I think of the women whom I was lucky enough to meet, but whom I have now lost to cancer – just like that, gone. I am one of the lucky ones . . . so far. I am beyond that daily fear that I am next. I am past that everyday feeling of: what does that pain mean? I am beyond thinking “what if” and I am beyond allowing myself to be tormented by all of that – at least for now. Still, I don’t have false hope or believe in some certainty that I have beat this. Nor am I resigned to having it come back. Instead, I am simply getting on with the business of living. But . . . that is complicated.

I was not supposed to be here, still, writing today, living, breathing . . . complaining. I was not supposed to be alive . . . today.

Five years ago I was given a somewhat grim prognosis. I never spoke of those dismal stats to anyone, not back then. And, it wasn’t just to protect my family and friends – it was to protect myself – as if in keeping silent about those stats I could suppress it, make it go away and make it not true – just as much as I feared speaking those percentages out loud would breathe truth into and make it real.

So, I let people pray for me. Who would ask anyone not too? I let people help me and take care of me, thinking that surely this was it. And yet here I am.

And, while I am frustrated and frustrated often . . . I do have a life. I am devastated and sad that I continually lose friends to this disease. I am frustrated that I apparently still need so much help with stupid, basic, everyday things. I am tired of not being able to keep up with my own life. And, I am tired of the looks I get from friends and family (okay, not so much my family, but some) when they see things that they would simply pick up, put away, do differently because clearly there is a better way. Well, my better way is limited now. I can’t just pick all of that crap up by myself, can’t even open a jar of anything (by the way), doing laundry is a lymphedema causing event in my life that leaves me with pain for days. And, if I were to actually keep up with all of the stuff that needs keeping up with, I would never have room for time with family, friends, music, nature . . . all of that would be replaced with chores and recovering from chores-induced-pain, followed by repeat, repeat, repeat. No thank you.

It is frustrating to live in a constant state of feeling behind.  I am a planner.  Oh, wait. I was a planner. When cancer came into my life I had plans, I had a direction, I had a trajectory – or so I believed. That was all replaced with: I can’t keep my head on straight, I can’t drive to a friend’s house (that I have been to a thousand times before) without now getting lost a few times first, I can’t do the simplest things like dishes without becoming exhausted and I can’t simply just get my old life back. But, I have a life.

I simply can’t explain myself anymore. I am not the same person I was and I never will be. And, that is, and has to be, okay. In some ways, maybe I am better. But, in most, I feel that I am less: less proficient, less organized, less on time, less of a friend, less of sister, less of a daughter, less of an Aunt, less of a lover . . . just less. That is something I mourn sometimes. Especially since I have the same wants, desires and even hopes that I had before cancer. It is all just somehow seemingly farther out of reach now.

And at the same time . . . I am more. More of a friend to those who are hurting and struggling through something I now know. More able to understand losses. Better able to cope.

I would like to think that I am more patient. But, I know that is not true. Everything has a sense of urgency now. Why? Especially when I long to . . .

take a slow walk on the beach and think about absolutely nothing. Be quiet. Be quiet with my best friend. Sleep. Rest. Be still. Not worry. Wake up. Breathe. Be calm.

IMG_1098

I want to hold my friends close and tell them that I love them. I want my family to know I love them. I want to thank everyone who helped me when I needed help the most. I am here because of you. There isn’t a day that I am not grateful for that. There isn’t a day that I am not in awe of how much love showed up in my life during that time. Incredible, truly incredible. I want to remember more.

I want to be better than I am. I want to feel whole. I would like to feel strong. I would like my life back please.

But, apparently you don’t just get to pick up your life after cancer. And even if you did get to go to a “life” baggage claim or to a “life” coat-check of sorts . . . everyone else would be long gone, they didn’t wait there for you. Lives are still happening and your cancerverse hasn’t slowed anyone else’s life down but your own. I am painfully aware of the events – really important life events of friends and family – that I have missed. I feel guilt over missed birthdays, anniversaries, babies I haven’t even met yet, celebrations I did not get to, etc. Those absences (especially in just the past couple of years) have created distance in my relationships. It was all fine and good to fail to show up to some event when you are bald and going through treatment. But, when your hair grows back and you look well, and you are back to work (even if working full time essentially precludes you from doing virtually anything else) some are a bit less forgiving of your inability to show up. I get that, I understand. I feel loss when I sit with friends and I don’t know what they are talking about because I simply was not there. So much got swallowed up in the past five years.

In those years friends lives have changed. Children have grown. Relationships have come and gone and a whole span of time – that straddled the time that I was ill and recovering – is simply gone.  I am incredibly grateful that I have a life. It is more cluttered than I would like and I feel constantly behind, but, I am here. And still, even after five years, I am working on making my way back.  I will write something less whiny soon. Tonight, I just needed to vent.

Who knows, I may do some catching up on the chores this spring, and then again, maybe not . . .

Blogging in a post Keller World

24 Jan

So, I am going to call this era – Post Kellerian. Why not, I can do whatever I want, this is MY blog (sorry Mrs. and Mr. Keller) :)

It is fascinating to me how much fascination has come of this whole Keller thing – not the least of which is/was the Keller’s joint fascination with Lisa Boncheck Adams – a woman for whom I have so much admiration I could not possibly find words to adequately describe. But, one would need only to read through her blog to understand why so many of us share a deep respect and admiration for Lisa.

She has chosen to write about her experiences as a metastatic breast cancer patient. Sometimes her writing causes me to shed some tears because it is so real is a about pain and loss. But, always, her writing – to me – is beautiful. The fact that the Keller’s were bothered by her tweeting and blogging is so strange to me – especially coming from a former New York Times editor. I would think that a journalist would understand (and appreciate) more fully the fact that Lisa chose to write about her experiences and share these experiences online.

We are all entitled to our own opinions. But, something about the Keller’s focus on Lisa seems, well, just really strange and pointless. I had the opportunity to read both Bill Keller’s Op Ed and his wife’s piece (prior to her piece being removed “pending investigation”). My take on all of it is that they were both a bit emotional and reacting without really reading or perhaps even understanding who or what they were writing about. For example, Bill Keller repeatedly referred to Lisa in the context of being a “cancer warrior” – which is language that she (if you actually read her writings would know) does not embrace at all.

So much has been written about  all of this – and by writers who are far more eloquent than I – so I don’t think I have much to add. But, I do feel that something has changed now after the Keller’s wrote about (and in my opinion, attacked) Lisa Boncheck Adams for simply writing about her OWN experiences and choosing to share these experiences online. I personally have benefited greatly and have been enriched by reading Lisa’s blog. No one forces me to follow her or to read her posts. It is my choice to read what I want and when I want. So that – the fact that the Keller’s are offended by something that they don’t have to even face, read, watch, hear about or “follow” – is what I find most ridiculous about all of this.

So, now I am writing again in my own blog and thinking a bit before I decide to write about my most recent experience with breast reconstructive surgery. How much am I now comfortable sharing in this Post Kellerian era? I really am giving that some serious thought now. (Not that Bill or Emma know who I am or care, but it does make me pause just a bit). Bill Keller’s piece was an “op-ed” piece – so it is his opinion. But, if you read his wife’s previous piece in The Guardian – you might see Bill’s op-ed as less op-eddy and more a defense of his wife. Strange uses of publications like the NYT and The Guardian – if you ask me.

I am proud of my blog. Not that it has changed anyone’s life particularly, but it has changed mine. I write mostly for myself. What began simply as a way to keep family and friends around the country informed on my treatment (and thus spare myself and my family the need for time consuming phone calls to say the same thing over and over again – during a time when I needed to reserve as much energy to treatment and healing as possible) turned into something else. It turned into many things actually.

One wonderful and unexpected thing my blog became was a way to connect with others around the world who are either going through, have gone through, or have family members who have had (or are going through) breast cancer. It catapulted me out of my living room and into a shared universe that is #BCSM (breast cancer social media) on twitter and it connected me not only online, but in person, with so many amazing and wonderful people. I was invited to a blogging summit and have been offered speaking opportunities, including a spot on a radio show. None of this was something I looked for or sought. But, I am most grateful for the real, human connections that this blog has enabled and even carved out. I am so grateful for the friendships that I have made. If I had not blogged or tweeted, I would never have made these friendships. Social media before my cancer diagnosis was something I knew very little of and even thought was kind of silly – why would anyone want to “tweet” I thought?

But, I am so glad that I found this space and joined it and I am so grateful for all that I have learned and continue to learn from so many amazing bloggers (and yes, tweeters).

IMG_4843

At the risk of causing distress or shock to either of the Keller’s, this is a photo of my IV line right before my recon surgery last week (took the anesthesiologist four attempts to get a vein and place this IV) and he beat me up a bit in the process (I mean that literally – he slapped my arm and wrist and hand repeatedly to get a vein to show up – lazy bastard – heat compress works without inflicting pain) OOPS!!!! Am I not supposed to talk about this post Keller? Sorry, I know, only pretty photos, pink ribbons and happy talk #fucancer and you know what? #fubillandemma #lookaway

Love and peace,

Lisa

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