Posts Tagged ‘ct scans’

Kenneth Lourie

Touching For Sure, But Not Always

February 7th, 2013 - by Kenneth Lourie

Usually, but not always, when I show for my scheduled post-chemotherapy/post-scan appointment with my oncologist, I am physically examined (touching, feeling). Recently, due to some enhanced computer and facility upgrades, I was shown the actual scans, digitized. However, on more than one occasion over the last 18 months or so, after we discussed the results of my most recent CT Scan – and lab work, no physical exam was performed. Apparently, as I later learned, the good results from my scan sort of trumps any need to feel for physical manifestations. Meaning, that if the scan shows no tumor growth or movement, it stands to reason – medically speaking, that corollary-type symptoms/indications/abnormalities would not occur/be present. To simplify even more, there’s no need for a “pre-operative grope,” to quote Dr. Hawkeye Pierce from an episode of MASH, if the diagnostic test shows there’s nothing to “grope.”

On balance then, the doctor’s not examining me is good news, generally, presumably; at least that’s how he explained it to me. It’s a professional version of “Why bother?” There’s nothing to see so he doesn’t have to take a look. I can live with that. Still, I remember the first appointment I had with my oncologist when he didn’t examine me (he always asks questions though); before I sort of realized that I hadn’t been examined, I was already in my car driving home. I said aloud to my wife, Dina: “He didn’t even examine me!” I felt cheated somehow, as if I didn’t get my co-pay’s worth. I called my nurse the next day to complain and express my curiosity/anxiety about why it was that my oncologist had not touched/tested me for any physical reactions/signs as he had on all previous appointments.

My doctor did not call back if I recall, but I believe my nurse did, with some tepid reassurance. However, on my next appointment with my oncologist, we discussed the reason why I hadn’t been examined during the previous appointment. He said there is a debate within the medical profession about this very subject. If the scans are encouraging and show no appreciable tumor growth and/or movement, the patient’s body will likely not exhibit any signs to the contrary. Ergo, physically examining the patient is sort of redundant. However, my concern that something wasn’t done to me (physically examined by my doctor) is not uncommon, my doctor said, and causes patients to have a not-unexpected reaction: skepticism. The perception by us patients is that the doctors are not in fact doing everything they’re supposed to be doing, “Hippocratically” speaking. The doctors might know better, and know the facts, but when dealing with us patients, there are feelings to consider. And if the patient’s feelings are not considered during this fairly intimate doctor-patient relationship, then the facts, clear as they may be, may fall on deaf ears. This is the quandary – as it was explained to me; examine a patient who you know (from their most recent diagnostic scan) is not experiencing any negative reactions (to their disease) or, don’t examine the patient and cause a negative emotional reaction by not physically examining them. And as any of us terminal patients will attest, there’s a fine line to be straddled between positive and negative thoughts and interpretations and how they affect the patient. Maybe, reassuring the patient might be more important than following protocol?

As much as I want to be a patient patient, the longer I survive, the more impatient and paranoid I’m becoming. I want to enjoy the good news, really I do, but sometimes I can’t.

Damn cancer.

____________________________________________________________

“This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.”

Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Read Kenneth Lourie’s 1st LUNGevity blog post & bio.

 

 

Share this:

Tags: , , , , , , , , ,
Posted in Lung Cancer Survivors | Comments Off

Many Chapters of Survivorship

March 9th, 2012 - by admin

by Kasey Long

Many people, including some friends and family, think my cancer journey began the day I was diagnosed with advanced stage lung cancer.

In actuality, it began some 40 years ago when my dear, sweet mother was diagnosed with colon cancer. We survived that, only to be dealt her lung cancer diagnosis not many years later. Following close on the heels of her cancer was my dad’s lymphoma diagnosis. Into remission he went and out of remission he came. Less than a year after losing my dad, the ugly face of lung cancer was back to take my mother. So I had plenty of up close and personal dealings with cancer from early on. My mother lost her mom to breast cancer when she was only 5 years old. I lost my best friend to ovarian cancer when we were both only 35. My wonderful husband’s first wife died of melanoma at age 36. And even my great canine companion was diagnosed with doggy lymphoma. I traveled with him every Saturday morning an hour away for his cancer treatment. Little did I know way back then, that Murphy was teaching me how to cope with my own chemotherapy many years later. I felt like I should simply be called the Cancer Lady!

My perspective certainly changed when I got my own cancer diagnosis. Though cancer had impacted my life so many times over, those life-altering words ‘You have cancer’ were never directed to ME personally. For the first time, I did not feel in charge of anything as I had been with my parents and friend. I was in a tailspin and couldn’t stop. My diagnosis was of a rare lung tumor. It was so rare, in fact, that no doctor here had ever even seen it, let alone treated it. Every doctor I encountered wrote me off with sentiments such as – “no light at the end of your tunnel” and that I wouldn’t see flowers in the upcoming spring. My oncologist seemed to experience actual pleasure every time he showed me that cancer bar graph of his. Lung cancer’s bar was so teeny it was barely visible. Oh but that was not enough for him. “You know,” he would say, “your type tumor isn’t even represented on that graph. It’s not even in that bar.”

I would sit in the chemotherapy center and watch all the women with ‘other’ type cancers being fussed over. They were spoken to so kindly and were offered warm smiles and genuine caring. I was the pariah. I sat by myself and the only time one of the chemo nurses came by was when my buzzer went off to change the bag. Talk about feeling like a leper! I often cried. I learned quite a difficult lesson those days. Yes, lung cancer is viewed very differently than any of the others. And I cried some more. Oh those days were dark in our house that fall. I was shocked. I was scared. I was depressed. I was so many things.

But most of all I was heartbroken for my wonderful man. Who wrote the book on fair that he was to lose another wife to cancer? I believe he was immobilized with grief. So I pulled myself together and discussed how things should be. The tumor I had is known to cause extreme pain and an excruciating death. At 36 my husband and his wife were ill-prepared to face death. So they did nothing. He was left to take care of so many things during her last days at home. I was determined to spare him such pain this time around. So I planned my funeral, checked into hospice policy and respite care. All paperwork was updated. I was ready to go. Well, I suppose I was not really all ready to go. No – I researched day and night for information about pancoast tumors. I read everything written about pancoast tumors – everything I could understand that is. Technical stuff – I didn’t get any of that.

None of my doctors ever mentioned getting another opinion. I don’t know how things operate in different cities, but at the time of my diagnosis there was no patient advocate for me. I was forced to become my OWN advocate. So I painstakingly got an appointment at Sloane-Kettering in New York. It took months to get that to happen. Took what little energy I had to get all that was needed like paperwork and copies of scans, etc. Every time I entered the cancer center to request additional information I was told that the medical folks here were perfectly capable of handling my case and I was literally scowled upon. Finally we were on our way – off to NYC. Friends actually were HAPPY that I was going to NY. What restaurants would I eat at, what shows would I see? Couldn’t they understand that I was dying and didn’t want to eat anything or see any shows? No, they could not!

Sloane-Kettering sent me away. Nothing they could do for me, I was told. Only after continuing my research did I discover that on staff was a pancoast expert. What was up with being sent away without even a consult? Hmmm…….. A third opinion at FoxChase, a comprehensive cancer center in Philadelphia, resulted in no better an outcome. On THAT staff was a pancoast expert. MY research had uncovered the maximum radiation that could be had and still be a viable candidate for surgery. This expert wanted me to far exceed that limit. I was not willing to do that – at least not yet. Dead end.

And then……in the middle of the night while Googling whatever it was I was Googling about pancoast tumors, a support site popped up. Now I had visited some of these ‘support’ sites over several months and found them to be too depressing and graphic. I did NOT need to read about someone’s grandfather and the terrible death he experienced. But something this particular night just seemed to reach to me from that website. It was Lung Cancer Support Community –LCSC. And there I found HOPE for the first time since embarking on my personal journey. I found hope AND help. I found the FIRST pancoast survivor. Up to this point I thought everyone diagnosed with this tumor was dead. Donna was alive and well and a 5 year survivor!!!! She directed me to other pancoast survivors on the website. And I discovered the name of the GREATEST doctor in the whole world (in my opinion!) He is at the National Institutes of Health – NIH – in Bethesda, MD.

This story of my journey can continue several more chapters. One could be entitled ‘How Lung Cancer Changed my Relationships with Friends or rather Friends with ME.’ Another could be “The Wonderful People Lung Cancer has Brought into My Life’. Everyone should read “The National Institutes of Health – My Magic Kingdom’.

My final chapter would be titled, ‘My Life is So Blessed.’

I am a 7-1/2 year advanced lung cancer survivor.

___________________________________________

Kasey is a volunteer moderator for LUNGevity’s Lung Cancer Support Community, supports patients and families in her local community and uses her story and experience to raise awareness and HOPE about lung cancer.

Share this:

Tags: , , , , , , , , , , , , , ,
Posted in Stories of HOPE | 4 Comments »

Dating with Cancer

October 14th, 2011 - by admin

by Laura McCracken

Sometimes talking about having lung cancer can be hard for me, because I try to live life normally and not think about it all of the time. However, the awareness of cancer is carried with me every day, no matter how distracting life can be. Taking medications, aches & pains, and online communications with other survivors, remind me every day that I’ll never totally fixed. However, it doesn’t mean that I’m going to give up, and feel defeated by my fate. I’ve been so lucky in so many ways that it’s not hard to keep pushing forward. From the moment you are diagnosed with cancer, you are a survivor, no matter how long or short your fight is.

Due to advances in medicine, in many cases cancer is being treated more often these days as a chronic condition, rather than a death sentence. Living with cancer is becoming more of a reality for many people, especially young adults. If I had the lung cancer that I do even ten years ago, I would have probably be dead by now, but there is hope now that I have many years ahead of me. When you are diagnosed with cancer in your 20′s or 30′s, and over time you are able to maintain it with medication, you stop thinking that you’re terminally ill and can start thinking about actually having a future. After two years of having stable health, I started wondering to myself, “What am I going to do with the next 10, 20, or even 30 years of my life?”

When I was diagnosed with incurable Stage 3B lung cancer in December of 2007 when I was 30 years old, suddenly all of the procrastinations of my life were sudden regrets. I had to make a list of the most essential things I wanted to do before I died, like visit Japan again, or make art again. Four years later I’m still here and living life as normally as possible. Of course some days are better than others, and the illness is always lingering the back of my mind, but more often than not I try to not let it hold me back, preventing what I feel compelled to do.

I am able to ride my bike again, and even rode 75 miles in one day during a charity even this past May of 2011.  Keeping active and involved with other people keeps you in touch with the world, and the more I move – the better I feel. It was slow process to get stronger, starting with taking walks, stretching, and breathing exercise.  Now I’m able to exercise regularly, work a full time job, take care of housework, travel, drive a car – all things I was worried that I wouldn’t ever be able to do again. Though of course I’m one of the lucky ones that could raise my cardio abilities, but because of great treatments available, more people like me are going to be able to accomplish the same things.

When death is staring you in the face, and you try so hard to live life to the fullest, you really realize that the most important thing in life is friends and family. If you don’t have a good support system, then it can be pretty difficult to push forward and thrive. Joining support groups, going to meetings, joining charity, and attending events really helps you keep in touch with a sense of community and understanding.

The one thing that I thought would never be possible though was to date again. I had pretty much resigned myself to a fate of being a spinster, and not feeling attractive to a partner. Dating again after being diagnosed with cancer can be a hard step. There are many stigmas attached with cancer, especially with lung cancer (even if you are a non-smoker like myself), so I was terrified of trying dating because I though that I would have to constantly have to fight to prove that I was “normal”. However I knew for my mental health and self-esteem, I was determined to try though to at least have a social life again.

I started hanging out socially again with friends, and going on “friend dates”, which helped me get back into the swing of being social, and raised my confidence. I was insecure at first in 2009 when I first started going out again, because my hair was still barely growing in, and my skin was so bad from medications. Especially for a female, when you lose your hair and your look changes so much, it takes a while to create a new image of yourself that you can feel comfortable with. Making myself jump in the pool again and realizing that no, not everyone is staring at me, and no one knows that I am sick, really helped me get used to creating a new sense of self-worth.

From 2009 to 2010 had gone on a few dates, and even had a boyfriend briefly, but due to my insecurities and poor choices so it didn’t last long.  I didn’t have much hope or expectations of anything really meaningful or worthy of a long-term relationship.   I still didn’t have the right mind-set that anyone could really want to be with me, because of my illness.  Constant worry if men would accept me totally, with scars or medication side-effects, or stick by me when I have to deal with health problems, all kept me from really feeling deserving of a healthy relationship.  Cancer can definitely be some very unsexy at times, and might be too much trouble for the average person to deal with.  It took a lot of soul-searching and decided that being in a real long-term relationship was something important that I just couldn’t live without. Why couldn’t I find a good person. There was no good reason why I had to live the rest of my life alone; only material skin-deep reasons that I knew didn’t matter to everyone.

By the summer of 2010 I was feeling more confident about my looks and feeling stronger, so I decided to try dating again. It was concerning to me about how I should present myself in an online profile, and decided to be very honest, but keep positive. I didn’t however want to present any false illusion that my life was perfect, because no one is perfect. Many people on dating profiles try to create a fake glossy image, or put way too many expectations on other people, but wise people can pinpoint the fakes. You don’t want to attract a fool that is easily swayed by fake advertising anyway, so don’t even try it. I was tired of the usual bar scene, and the whole thing was very exhausting to me physically and spiritually. I needed to find someone who was grounded, healthy, positive, and wasn’t caught-up in materialistic pursuits. I tried to look for someone that would be good for me, and good to me.

I debated about how much information about my cancer history to share with a guy at first, because they might not understand, or pass judgment before they really knew me. On my first date with my boyfriend, I decided to just be honest, and be myself – and not to create any illusions. When I realized that I really liked this guy, I worked up the nerve and dropped the dreaded “C word”. Often people say wait a few dates to mention it, but I didn’t want to waste our time if it was a deal-breaker. To my surprise though, he didn’t think it as an issue. However I tried to choose someone sensitive and kind, so maybe that helped. I was very wary at first, but after a while, I realized that he really was comfortable with me and my illness.

Maybe because I’m at the age where many people my age or older have already had some sort of trauma and major life experiences, they have already learned not to sweat the small stuff. People can learn from past mistakes, and it can put into focus what’s really important in life. Older and wiser sometimes really is true, and people learn not to have unrealistic expectations from other people. I certainly didn’t expect someone to be so compassionate and understanding so such a big issue in my life. Being sensitive to the limitations and needs of another person can be tricky, but honesty and empathy goes a long way.

October of 2011 I’m celebrating the one-year anniversary with my boyfriend.  It’s the longest relationship that I have had since college, which amazes me.  I never knew it would be possible to find a man who is so understanding, loving, and not swayed by the fact that I don’t know how long I have to live.  His attitude is “we never know how long we have here on earth”, so we just try to make the most of it.

I was worried at first that perhaps my boyfriend didn’t totally understand how ill I had been and how unsure my future is.  So, early on into our relationship when I knew things were getting serious, I took him with me to one of my oncologist appointments so he could ask any questions.  After getting more information, he really understood the disease and my situation, but actually felt more confident about my outlook for the future.  It’s good to have someone else on my team.  He has helped me become more confident and healthier mentally and physically.

It is possible to love again, and have a real connection with someone special.  I consider myself very lucky, however being brave and keeping a good attitude has not only helped me battle cancer, but also conquer love.

Laura is participating in Breathe Deep DFW on November 12, and will be one of the survivor speakers that morning.  Join Laura on November 12, or check the LUNGevity website to find a Breathe Deep event near you.

Share this:

Tags: , , , , , , , , , , , , , , , , , , , ,
Posted in Young Adult Lung Cancer Blog | Comments Off

A Moment in My Life -After Chemo

August 23rd, 2011 - by admin

by Robbie Joiner- Walton

Last night I went to my local Lung Cancer Support Group.  I’m pretty new to the group.  And I had not attended a meeting since March mostly due to the extreme heat here in Texas. It takes a lot out of me.

So last night I ventured out and I had the opportunity to meet a new member of the group currently going though chemo. He hasn’t had much success or any positive changes in his cancer status since beginning chemo. He was given the option of another line of chemo. From the tired look on his face, and after what he had already gone through, you could almost read what he was thinking - Do I even have the strength to do it again?

The disappointment that he was experiencing really touched me in a way that I never thought could. I found myself feeling lucky, blessed, and grateful for where I am today in my recovery, because I could have easily been in his shoes.

And at the same time I felt anger and deep sadness for him and for people who are just starting their journey with this horrible soul changing disease.  You see how it can devastate the lives of the host and their families. You will never be the same after you have lung cancer!  Life is different! You look at life differently and you can have physical limitations.

But I believe you have to keep on fighting with every thing that you have….Because there is hope.  My story is a story of hope.

I don’t know if anger or my ego battles for me but it doesn’t matter- just so you give it every thing you have.

You would think, I would be a pro at this by having had lung cancer two times.  But I am not!  The word “cancer” still cuts like a knife and my heart still bleeds pain while my brain goes into panic mode whether it’s me or someone else going though it.

I felt the tears well up on the drive home and I prayed for this person for what he is going through.

Just a moment in my life after chemo.

Robbie is a two-time lung cancer survivor.  She was originally diagnosed at age 18, and then again last year.  After having chemotherapy, radiation and surgery she is cancer free.

Share this:

Tags: , , , , , , , , , , , , , , , , , ,
Posted in Lung Cancer | 4 Comments »

Diagnosed With Lung Cancer at 24

June 28th, 2011 - by admin

by Heather Geraghty

On December 28, 2010 I was told that I had lung cancer.

It didn’t seem possible. I was only 24 years old! According to the surgeon, the tumor had been growing for years.

On January 20, 2011 I had two-thirds of my right lung removed. I had 23 of the longest days of my life knowingly living with cancer, and when it vanished from my body the shock of knowing still remained.

After surgery everyone who had surrounded themselves around me had returned to their daily routines, but I was still left wondering “how could this happen to me?” I thought to myself over and over again “What if I never found out? Would I still have lung cancer right now?” My lung cancer seemed to come and go so quickly from my life, and when it was gone I didn’t know what to do with myself. I felt alone, I couldn’t talk to anyone because nobody could relate to me. I felt scared, not only had I gone through painful surgery but I didn’t want the cancer to come back.

My friends didn’t understand which made it difficult to talk to them about any aspect of my cancer. During this time I was surprised to see faces of people, especially those who showed their concern. I was more surprised when I didn’t see the faces of people who I thought would be the most concerned. This was the first time in my life that I felt completely helpless. Simple tasks such as sitting up in bed, walking from one room to the next, and taking a deep breathe were significantly difficult after surgery. My mom and dad were the most impacting during my recovery, and still remain my biggest supporters to this day.

At times, even now, it is still difficult for me to admit to myself as well as aloud that I am a lung cancer survivor. Many days it doesn’t seem real, and I don’t believe that it has happened to me. Lung cancer has changed my whole perspective on life, which has forced me to refuse to take anything for granted.

My first check up is in August, the first of many to come in the next 2-3 years. And I am terrified to be told that the cancer has come back. Since experiencing lung cancer, I have been horrified to find that there is little known about this cancer, however, many stereotypes exist. Recently, I met someone who told me that “anyone who gets lung cancer did something to deserve it”. At first this made me angry, but then I felt defeated because I realized many people in society feel this way about lung cancer.

I hope to change this perspective with the support of an organization called LUNGevity.

The LUNGevity Foundation raises money and awareness for lung cancer research. I have found a family within this organization that has given me hopes for my future and the future of lung cancer. Since connecting with LUNGevity I have dedicated my time to organizing the 1stannual lung cancer fundraiser for LUNGevity at Café Fontana’s in Maple Shade on September 7, 2011 from 7pm-10pm.

The objective of this event is to confront, promote, and speak freely about the many faces of lung cancer in order to begin erasing the stigmas. Proceeds will benefit LUNGevity. Tickets are $50 – food, drinks, music, 50/50 cash raffle, Chinese auction, door prizes, and more!

To purchase tickets and for more information please visit: www.heathergeraghty.blogspot.com or call (609) 330-3617.

Share this:

Tags: , , , , , , , , , , , , , , , , , , ,
Posted in General, Lung Cancer, LUNGevity, Testimonial | 6 Comments »

« Older Entries