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.
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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

Wednesday, June 25, 2014

Keep 'em Comin

Today's scan came back negative. It's now been 32-months all clear. My recurrence happened in 2011, three years after my first diagnosis. Getting to that point again will be comforting. Perhaps it will be less worrisome. Although, I've never gotten that far, so I don't know. I don't know if the underlying thoughts of worry that hum in the back of my mind will completely go away. Or get quieter. Perhaps they will. Perhaps they won't. But as of today...I'm cancer-free.

Monday, March 10, 2014

All Clear

My recent colonoscopy in January as well as my CT scan & bloodwork earlier this week both came back negative. Now CT scans will be every four months instead of every three. It's been almost 2 1/2 years since the lest time there was any detection of cancer in my body.  So, I am almost halfway to the five year milestone.

Wednesday, December 18, 2013

Ninth Quarter - All Clear



Today's quarterly scan came back negative. It feels a bit uneventful to post the same thing I've been posting lately. And then I think about what I just wrote and start laughing. Uneventful is exactly what I hope for. No news. And it's been almost 26 months (nine quarterly scans) with no detectible sign.

Twenty-six months isn't really all that long, (although it's a third of my younger boys life). It seems like just the beginning, should I be so lucky. But then I think about the old timer who was standing behind me in one of the many lobbies at Sloan Kettering. I overheard him commenting to the fella who accompanied him about the three months his doctor gave him to live. A few minutes later, the three of us were on a packed elevator. As the elevator opened its doors on a different floor, the people waiting saw the few remaining spots and didn't enter. They just stood there. I looked back from the front of the elevator at the folks behind me and said, "We must be intimidating. They won't get on." And it was the old timer who was the first one to start laughing and cracking jokes with me, telling me I was the reason! He may have only three months to live, but that's just it. He's living. He probably has no idea how much he inspired me today. I'd love to sit back with him and hear some of his stories. He seems like the kind of fella who would have a few to tell. That's a hell of a place, Sloan Kettering. Shed em i ya got em. And keep living.

Wednesday, September 25, 2013

Again, No Detectable Sign

My scan and blood work came back negative today. As of October 28th, I will be two years with no detectable sign of cancer. It was wonderful to hear especially since I had it in my mind that it had only been one year. I don't know what I was thinking, but Dr Kemeny and I were both grinning when she looked at her notes and saw it had in fact been two years. My first thought was, "Perhaps I will be able to see my little boy grow up to be a man after all." That's what matters for those of us with kids. Not like other parents don't share such concerns. I just just have reason to remember it far more frequently.

In fact, it has taken a lot to stay hopeful these last couple of years. Yet on the way to NY today, I noticed I feel much less fear about another recurrence and I'm indeed grateful for that. Getting further and further along with no detectable sign of cancer feels more and more like the end of a chapter, like I posted the last time I left New York following my quarterly scan. There was certainly more circumstances than just cancer that effected my outlook on life, but having the cancer diagnosis and treatments further and further behind me has made a significant difference in how I take on what lies ahead.

I'm still recovering as far as physical health goes. I still suffer if I get less than sufficient sleep more than one night in a row. A few days of that and my immune system starts to tank. Supposedly by next summer my immune system will be fully recharged. Seven-months of high dose chemo "because you're such a healthy young man" really beat the living hell out of my immune system. My docs said it would take my immune system 12-24 months to be 100% again. It feels like for me it may be on the closer side of 24 months. And if that's part of the cost to stay alive, I'll take it. Today I'm deeply grateful to be alive and able to face whatever struggles lie ahead, with my little guy by my side.

Wednesday, June 12, 2013

Nineteen Months: No Detectable Sign of Cancer

Today's quarterly scan was negative. I have now been clear of any detectable sign of cancer for 19 months. I'm in a bus in New Jersey coming out of the tunnel, looking at the Manhattan skyline, headed back home. Another chapter compete. I feel grateful right now. And I find I no longer recognize much of this life anymore. Many of the same people and places but so much of my life has changed so drastically in so many ways.  I feel much more an observer in many aspects. In other ways, such as when ego has the reins, I forget to observe and then life becomes familiar again. And all of that is in the background of a "good bill of health" for myself and my family. Amen.