Thursday, March 2, 2017

This Could Be the Last Time

Shortly after my December appointment with my oncologist, I received a call from Memorial Sloan Kettering to schedule the removal of the hepatic artery pump I've been carrying around for the last five years. I thanked them for the call and said I hadn't made up my mind yet.  I kept having two thoughts. Logic kept telling me I should keep the pump in for another five years 'just in case.' My heart kept saying 'it's time to have it removed and move on' and I'd cringe as I imagined myself going to the local oncologist every eight-weeks to have the pumped refilled (for routine maintenance). This image is really what had me realize it's time to have it removed.

I'm incredibly fortunate, perhaps just damn lucky that I'm not only alive but actually in remission. And to return to the oncologist every eight-weeks for an indefinite future of pump maintenance would keep my mind in a constant cancer mindset. It's really not a logical explanation for why I'm doing it but it is the truth. I mean, my oncologist did recommend it which obviously is very encouraging, but there's also a part of me that wants very much to return to the world that so many of you live in - a world that doesn't include regular caner-prevention maintenance. A world where I no longer get pats on the back and words of affirmation for still being cancer-free and alive. I actually can't really remember what it's even like but it sounds a little more peaceful - a little more free than how I feel right now. And if my doctor didn't think it was a good idea, she wouldn't recommend it. It was just up to me to take the leap.

Now I can't leave out that my son, who is now ten years old, began to cry when I initially told him my doc recommended I have the pump removed. His first response was, "But what if you get cancer again?" I gave him a hug then he sat on my lap and we talked for a bit about why Dr. Kemeny recommended I have it removed, that there are downsides to keeping it in place (infection, blood vessels growing around the pump, which may have already started, to name a few). He began to understand and the next day I checked in with him and he thought it was a good idea to have it removed. I honestly wouldn't have scheduled the procedure without his understanding. I needed to know that it made sense to him. Not that long long ago he said, "Papa, it's a miracle that you're still alive." He understands the magnitude of a cancer diagnosis. I needed us both to be on the same page.

So a few weeks ago I met with Mike Di'Angelica, the surgeon who resected my liver and installed the pump back in 2011. We discussed the ins and outs of the procedure and when I brought up the fact that the pump can't be reinstalled once it's removed, he told me that in my specific case it's pretty likely he could install a second one if he had to. THAT stopped me in my tracks. After all that thought and reflection, all the preparation it took to get me here, I find out he can install another one if he had to?? He said I was a special case for him because all he had to do was cut off part of my liver and - boom - all done. Most of his patients got  to him because they've been told they have inoperable tumors and he has to determine what can be removed and what can't. So, yeah, heaven forbid I have a recurrence in my liver, he can probably install another pump. To tell you the truth, it felt great to learn about this after I decided to go ahead with it because I went into it fully decided with no attachments and no 'what ifs.'

It's an out-patient procedure so I need a driver at the end of the day so I invited my friend Sparx to join me and he agreed to. Sparx accompanied me to NY back in 2011 when I went in for the liver surgery and pump installation. I thought it would be nice to have him complete the victory lap with me.

It's funny. This afternoon, I almost couldn't work. All at once the emotion hit me and all I wanted to do was be outside on this beautiful day. I was thinking about the fact that it's been ten years since it all started. Ten. Years. I had so much emotion moving through me and I really needed to work, so I did what felt right. I closed off my part of the shop, put Back in Black in the CD player, and cranked it. There's something about that album for my generation. It goes right to core. Then I went for a walk while I ate my lunch. What a beautiful day it was. 

So this Friday could be the last time I have a surgical procedure for this ordeal that began a decade ago almost to the day. It was March of 2007 that I was diagnosed for the first time. And this could be it. All day I've had a Rolling Stones tune in my head

Well this could be the last time
This could be the last time
Maybe the last time
I don't know

The only exception is that I was mostly hearing that Grateful Dead sing it today. This really could be the last time. That would be something.

Wednesday, December 14, 2016

FINALLY IN REMISSION

After nine and a half years I am finally FINALLY IN REMISSION [fill in the blank with your favorite celebratory profanity. Yes Mom that includes you as well, if you like because this is a big deal. Plus I won't tell anybody]. Right up until I heard the news, I didn't know how I'd feel. It wasn't until I told my mom that I was clear how I would respond. I'm overjoyed and starting to sink into relief, wondering what life without all these appointments will be like.

I'm on the bus right now headed back to Ithaca as I type this. I opened Spotify to put on some tunes while I found my way through how I would express the thoughts I have going on in my head and I couldn't think of what I wanted to listen to. I really wanted to listen to something but nothing came to mind. Like nothing. It was really weird. I just stared at the screen and then I thought of Men at Work Business As Usual and thought "What?! This is what I want to celebrate remission with?!?" So I thought about that.

I was eleven years old when Business as Usual was released. I played that cassette in my Walkman until it was too warped to tolerate, while I delivered my morning papers.

I only like dreaming all the day long
Where no one is screaming 
Be good be good 
Be good be good be good 
Be good be good be good
Be good Johnny

What kind neighbors I had. I took forever to get my papers delivered. Pulling around a two wheel basket loaded with papers because I took on a second paper route, making patterns in the snow with the wheels by turning the cart around in different directions, almost never meeting the required 6:15 AM deadline. What I am talking about "almost." More like never. Hahahaha! Perhaps the album speaks to me because back around that time I still had a little innocence remaining, before a rather abrupt crash course into the realities of the world. For me the early 80's were a time when I still believed anything was possible. It was incredible. And every once in a while, the music of the 80's will bring me back there.

So yeah, after nine and a half years (nine years and nine months actually) I am in remission. Dr. Kemeny immediately said I can have my, Hepatic Artery Pump aka the Kemeny Pump removed. When the pump is removed, it can never be installed again, so there's a risk. I asked what the odds of recurrence are and she said something along the lines of very, very low. Highly unlikely. And she immediately followed it with a story about a patient of hers who had a recurrence in his liver five years after his pumped was removed. She laughed as she told me because it was so absurd that it even happened. I essentialy have as much chance of a a cancer diagnosis as you do. And Americans have a one in four chance of being diagnosed with cancer. What's different for me is that if I have the pump removed and then I have a recurrence and it's in my liver, I won't have the option of the Kemeny Pump, the most direct way to attack liver tumors.

Before I met with her, I was talking to guy who went a year without recurrence and now he's back for treatment for a few inoperable tumors. Talking to him was easy because he's clear that any time he has now, one year or twenty years, it's all bonus. Because it is. I suppose any time on earth for anyone is bonus time, but you just tend to be aware of it more frequently when you've been faced with the high probability of death. What wasn't easy a little later in the day was sitting just feet away from a few folks sitting together trying not to cry, barely able to take their eyes off the floor, let alone look at each other. You can always tell when a family is at Memorial Sloan Kettering for the first time. Most of us looked like that. Awestruck, heart-broken and terrified. When I made eye contact with two of  the three who were even willing to look up from the floor, they quickly looked away. I made myself available to talk with them because I wanted them to know the suffering can go away or be greatly reduced but it was clear they just didn't have it in them. I get it. It's really hard for most folks to talk with people when they're anxoiusly awaiting the doctor's prognosis. God bless em.

So, for a few years now I've been chewing on whether our not to remove the pump once I'm in remission. Naturally I want this thing out of my body. And my highest priority is the two kids in my life I want to be around for and I don't like the idea of reducing those odds. I could also wrap myself in bubble wrap every time I go outside or simply never leave the house. I told her I'd think about it, but at the moment my loudest thought is to remove it and move on. To walk away from the pump maintenance that's required of me every eight weeks. It's a lot to think about and I'm in no rush. I've just been told it's highly likely that I won't be dying of cancer anytime soon.

Sunday, January 17, 2016

The News I've Been Anicipating

On Wednesday I received the good news I have been anticipating since September. The indeterminable spots the radiologist claimed to have seen on my CT scan on one of my lungs in September were nowhere to be found this time round. So I have put aside any concerns about a recurrence in my lungs [huge sigh of relief] and can say I am officially four years cancer-free. In addition, Dr. Kemeny said I am done with quarterly scans and said she would see me again in six months. I told her I was so happy I could hug her. She looked at her staff and said, "He said he could hug us," then as she walked past me smiling, she rubbed the top of my forearm with her fingers. When it comes to Dr. Kemeny, that was a hug.

Not surprisingly, only five minutes after hearing the good news, my mind started in, wondering what possible risks there are in waiting six months until my next scan. A few minutes later I was laughing at myself. As soon as I get news about the clear scan and the need for fewer scans each year, my mind starts right in at the first opportunity to knock me down. The mind is unbelievable. Or perhaps a better word: predictable.

I'm thrilled right now. In nine months, if I am still cancer-free, I will have reached the five year mark and be considered in remission. My hepatic pump and port can then be removed, although since the hepatic pump can never be reinstalled again, part of me isn't in a hurry to get rid of it. It's an odd catch 22. And I'm not going to give it a lot of thought for now. Right now I'm feeling incredibly grateful to not have a recurrence in my lungs not to mention anywhere else in my body. Wednesday was a good day.

Friday, October 2, 2015

Return to Stillness

I feel peaceful again. I don't feel anxious or scared about the possibility of recurrence as I did on September 23rd.

Just days prior to my meeting with Dr. Kemeny, I had finished a silent retreat with Zen Buddhist teacher Adyashanti. And fortunately it was not completely silent and I was able to have a short conversation with him about my fears of recurrence or more specifically, my fears of a recurrence of the combined debilitating circumstances I found myself struggling through from 2010-2012. In essence what I came away from the conversation with was an awareness of what's available out of "letting the feelings in." And how not letting them in, is in fact to resist them. And so it was two days following my conversation with the doctor that I remembered to let the feelings in. Initially I found myself repeatedly letting them in. Over and over, each time my mind recreated the fear. Yet by the end of the day I felt peaceful. Wednesday evening, worrying about money the fear returned, though not nearly as powerfully as it had upon hearing Dr. Kemeny's concerns about my scan. And eventually the fear dissipated.

Right now I'm clear I have nothing to fear because there is no sign of cancer in my body. And should another wave of fear roll in, I know what to do with it. It really is all self-generated. I find that quite comforting.

Wednesday, September 23, 2015

Not bad news. A little less than good news.

Today was another oncology appointment - a routine four-month scan and blood work. Dr. Kemeny came into the exam room and said, "Everything is fine." I responded by reminding her that come October 28th, I will be four years cancer-free. She said, "After four years we only do scans every six months. However..." and she began flipping through the radiologists CT report... "they're reporting a small indeterminable nodule on one of the lobes of one of your lungs, which I couldn't see when I looked at the scan. And I've been looking for it. So I don't want to go to six-month scans with you yet. I want to see you in four months and be sure this is nothing, ok?" I said ok and we said we'd see one another in four months. I walked out to the waiting room with that far too familiar feeling of floating out of the oncologists office that shows up whenever the doc gives me reason to wonder if I'm going to be okay, and I found myself in the waiting room walking aimlessly. I suddenly had the thought, "The road goes on forever and the party never ends." It's odd what pops into the mind randomly when contemplating the possibility of fighting for ones life again. I also noticed at the same time, my mind trying to think of ways to not spend the next four months anxiously waiting for my next scan. We all know where trying to not think of an elephant will get you. So at the moment, what's so, is that my scan was clear of any signs of cancer. And I'll deal with the wondering as it comes. And it usually comes in waves.

Early on after my first diagnosis was treated and no longer detectable, I asked my doc why they generally stop the CT scans after five years; why they don't keep scanning and looking for disease just in case. He said at that point, it can turn into a witch hunt. And if you scan anybody's body enough times, you're eventually going to find something that appears odd. So perhaps something just appeared odd. The cancer markers in my body are currently very low, below normal in fact. However, I had low cancer markers the first time I was diagnosed. But the second time, the count was above normal. So who knows. Right now I'm cancer-free. I'm not going to get hung up in the world of what if. And as I said, I'll deal with the waves as they come.

Thursday, October 16, 2014

Routine CT Scan & Unexpected MRI Brain Scan Negative - ALL CLEAR

View from dressing room of the CT dept

I was literally just about to click PUBLISH when I got a call from Dr Kemeny's office that the MRI brain scan came back negative. That plus my CT scan coming back negative, come October 28th, I will be three years cancer-free. Sweet.
°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°
What I was about to post... [huge sigh of relief]
Yesterday was my routine CT Scan. It came back negative as did my blood work. All clear, now I'm just waiting for my MRI brain scan results. Yeah... Reports of consistent headaches generally result in brain scans for recent former cancer patients.

My doc told me the CT Scan and blood work were negative which would have normally put a smile on my face. Coming up on three years cancer-free, which I wasn't able to do the last time, is usually looked at as progress. But the headaches. She asked me about them. A few times a week I feel pressure on the left side of my skull. Same place same feeling. I feel it right now actually. It's the same place where I feel the start of the migraines I occasionally get. I figured the feeling was just that. Well my doc views those things a little differently. She looked at me and said, "Maybe we should do a MRI of the brain because sometimes there's..." Her pause was heavy as her eyes locked in on mine. She didn't want to say the words. I immediately felt the need to relieve her of the silence. Relieve us both. A statement like that is a heavy one. Her pause was painful, knowing she didn't want to utter the words. And I didn't want to hear them. So I finished her sentence with "Yeah. Sometimes there's..." I squinched the left side of my face with a little tilt to the head. No need to finish that sentence. Dr. Kemeny's not one to express a great deal of emotion. She's a machine and incredibly dedicated to her patients and to her work. One patient to the next. She does one thing: she leads the battle against cancer with her patients. She doesn't stop to express much emotion. I don't fault her for that. It works for me. But the silence of her unfinished sentence with her eyes locking in on mine. There's emotion in that. Behind her pause there is a deep well of emotion. And discomfort with it at as well. She preferred to not have to speak the words. I was in agreement. Let's not open the flood gates if we don't need to. She asked if I'd be willing to stay in town for a few more hours, if she was able to schedule an MRI for me. I told her "Of course."

I kind of thought this might happen. Waiting in the exam room, I didn't sit and scroll through facebook like I normally do while I wait to hear my scan results. I knew any metastasis to the brain wouldn't show up on a CT Scan for the chest, abdomen & pelvis. But I knew my blood work could reveal something, but it didn't. So no, I did not peruse facebook on my phone. I paced the waiting room. But the room is small so I could only take a few steps then turn around and do it again, which was making me dizzy. So I walked in a circle around the exam table. I had to move the flimsy little metal tray on wheels and put a rolling desk chair back in its place. Oh, and move the sharps container out of the way as well. I needed to walk.
So while Dr. Kemeny's staff looked for an office where I could get a last minute MRI somewhere in the Manhattan, I walked down the hall to the lab to have my port flushed and my Hepatic Artery Pump filled with another 8-weeks worth of glycerol. This is routine for me - every eight weeks - same thing until the device is removed. And that's not recommended until I'm five years cancer-free. Remission.
Once my port and pump were taken care of, one of Dr. Kemeny's staff gave me a print out with a time and a place for my MRI brain scan: 77th St. Twenty-four blocks north. Every four months at Sloan-Kettering, I have a CT Scan and then two to three hours later I get the results. But with this MRI brain scan, I have to wait a day or two to hear from my doc. They expect to have an answer for me today or tomorrow - Thursday or Friday. We call the thoughts we deal with while we wait "scanxiety." When it grabs a hold of you, it's the worst.

Once on the street, I hopped onto the hospital shuttle that would get me up to 66th between 1st & 2nd Avenues, at which point I could just hoof it the last 11 blocks. It was only 4 o'clock and my appointment wasn't until 6. But once I got on the shuttle, the last seats available in the back, I looked at my fellow patients and - BAM! - flooded with thoughts, "Oh no. I might be one of you again. Oh hell no. I'm one of the cancer-free guys. I just get the routine check ups. I don't want to be on the other side again." I just kept looking at the backs of their heads from the back of the bus. I don't want to go back.

The shuttle dropped me off and I headed up 2nd Avenue. I barely got past 67th Street and the anxiety was filling me up like a fountain drink churning bubbles & ice as it fills up the cup, foaming, getting closer and closer to the top. Is it gonna overflow? I saw this guy glance at me and realized he was noticing my face. I must have looked like hell, like I was dealing with something heavy. I wasn't sure if my face was going to do one of those super short bursts of emotion, a micro-second explosion of spit and tears or if I was just gonna start puking in the nearest corner. My stomach was a mess and the emotion was creeping up my body and towards my head. Then I thought, "Uh-uh." I started breathing again. "I'm not gonna lose my *hit." At least not right here in the middle of the street. My friends Carol & Kristy were talking to me the night before about Echart Tolle's The Power of Now. I never read that one. But I think I get the premise. Be Here Now. I was fearing a possible future based on my experience from the past. I took some more deep breaths. I thought about calling one of my friends/coaches, Kathy or Margot. One of them would quickly represence me to what's actually so, as opposed to getting lost in the fear and anxiety of the worst case scenario. I took some deeper breaths and reminded myself there's nothing to be upset about. MRI scans are not upsetting. They're loud and they're boring. Not much to get upset about there. So I got my head together and I arrived at the office on
77th Street. I checked-in, then went and got some comfort food. Pizza and a Pepsi. A fountain drink. Haha! And I watched the people. I love watching people, especially in NY.


When I first arrived in the morning, I dropped off my car on 56th Street at the Bristol Parking Garage and started walking to the clinic, which is about five blocks southwest on 53rd. Not even a block into the walk, I came up upon three guys who had just unloaded a large crate, stretch wrapped in white plastic wrap, off of a truck. Two of the guys were getting ready to arm wrestle on the crate of whatever it was they were moving: one Asian guy with some serious guns and smaller black dude with dreadlocks who seemed to be pretty sure of himself. I stopped and watched which added to their excitement. There was a third guy, clearly their co-worker. He was a heavy set white dude pretty amped up about the whole thing. He said go and their arms were locked for just a moment but then it was over. The Asian dude pinned him. The first round went way too fast. But the dreadlock dude wanted to go again. Again the white dude said go and their arms were locked in place, almost no movement, their faces looking like they were gonna kill somebody. So the third dude and I stood and watched, grins on our faces. I love it. And he was antsy as hell. Unable to stand still while he watched these guys go at it. The muscles and veins on this little dreadlock dude were popping out of his skin. You could see his whole body was in it. The Asian dude was just a rock. This went on for probably far less time than it seemed. Their arms barely moving. Teeth gritting. Everything. But then it ended. It was a draw. They were working. We all burst out laughing. I gave em all a nod and walked away. I do love this city even if I could never live here.
 
So I finished my pizza as it began to rain, and I walked back to the office to get my %*#$&^*  brain scan. Scared? No. Pissed off is more like it. At this point, my body can be cut up, radiated, chemoed all the hell out. Whatever. I can take it. But my kids, they need me. Them I'm attached to. Another deep breath. I shook it off. All I've got now is my scan. I was back a little early, so I walked to the cul de sac and stood over the FDR Highway, watched the cars go by and looked over the river as it slowly churned downstream. Of course with David Byrne singing in my head

I don't know why I love her like I do
All the changes you put me through
Take my money, my cigarettes
I haven't seen the worst of it yet
I wanna know that you'll tell me
I love to stay
Take me to the river, drop me in the water
Take me to the river, dip me in the water
Washing me down, washing me down



It started raining harder so I went in and waited. There was some concern by the techs about whether the hoops in my ears might block part of the image or worse, heat up during the MRI. I started laughing and asked the tech as we walked to the changing room, if it was pretty common for peoples ear to burst into flames during MRI scans. He laughed and assured me that would not be the case, and in a worse case scenario, my hoops would just get really hot. Lovely. And as they were laying me on the table and placing my head in a contraption used to minimize movement, a different tech placed a rubber squeeze ball hooked to a line into my hand and said, "If your ears get hot just squeeze this and we'll stop the machine." I calmly said, "Okay," all the while thinking, there's something about a limp little squeeze ball that just can't convey the message, "Ahhhh! Get me the **** outa this thing!!!" while my ears are cooking like bacon. But what are you gonna do. Just trust them. And everything went just fine. I thanked them and said goodnight.

I hopped in a cab and got myself back down to the Bristol Parking Garage, picked up my car and headed home. The ballgame was starting. It was a good distraction...not really. But anyway, I was on my way home. I drove through the occasional torrential downpour, and in just over four hours, I was in Ithaca. I pulled up to the Dock. It was Reggae Night and my friends were waiting on me. I needed some connection. Plus, I had received a text while still in the city: the band rehearsed "Do Right" and we were going to sing it. I don't think I had been at the Dock for 15 minutes and we were on stage singing. It was perfect. The Dock was full of people. Full of love. Saw some beautiful smiling faces in the crowd. All of us digging this great music. Great scene. Dancing. Smiling. People coming together to be filled with joy for a little while. I needed it. We all need it.


Sunday, July 27, 2014

Following Your Gut

A few days ago, I received the comment below on my January 27, 2008 blog post entitled, Had I Followed My Gut...(cont'd)

Her name is Kelly. I asked her for permission to share her comment as an actual post on this blog and she agreed. It's so very important to be our own advocates, with no rest. When listening to our doctors, Kelly & I both went against our better judgment. And we both paid for it. Our hope is that others will learn from our mistakes, instead of repeating their version of our mistake.

.........................................

I ran into your site from my stats page. What you have written, mirrors so much of how I felt. I was so angry. I had been vaginally bleeding for months and was seeing my gynecologist for months. I had a bump that she removed that came back showing I had HPV (Sept 2009). From various other ailments, I am immunosuppressed so like most of the population that "grow out of HPV" in a few years, my body couldn't. She did a procedure that removed the lining of my uterus which should have stopped the bleeding. It didn't. I am immunosuppressed due to Rheumatoid Arthritis.

Around that time, at 41, I was faced with a choice of a total left knee replacement or a hysterectomy. I talked to my gyno and asked if it was ok to put off the hysterectomy so I could do the knee replacement. She said it would be no problem and the hysterectomy could wait. So, in Feb. 2010, I chose to do the knee replacement first even though I was sick of bleeding, I was more sick of walking in constant pain. In May 2010, I had a hysterectomy. She wanted me to stay in the hospital for two nights and I begged for just one night. She relented. She called me the next evening around 5, she was in tears and told me I had cervical cancer. I was dumfounded and mad at her and myself. I knew better - I had been fighting arthritis for 15 years and knew you have to be your own advocate when to comes to health issues. I have never seen or spoken to her since - I have accepted the cancer after many sleepless nights.

Between the doctor not pushing me to do to the hysterectomy first, I wasted 9 months of being treated for cancer. I am a single parent of now 12 year old triplets and I have to live for them. I was furious - I had to let go of the anger. I was lucky that it was Stage 2 B and had not spread to my lymph nodes. I am in remission now. But I have had to have numerous procedures to laser away precancerous cells. Keep up your fight and may you stay in remission. You will be in my prayer.

LINK TO KELLY'S BLOG