Survivor Guilt

Survivor Guilt. This is such a common phenomenon among those of us who face a serious, life-threatening disease.

I have known so many friends and friends of friends who have passed away of cancer since I was diagnosed. It is a tragic side effect of putting yourself out there, of making friends with others within the cancer community, of sharing your disease and experiences with others.

It never fails that I don’t feel guilty when a friend passes away and I am still here, living and enjoying my life. It is difficult to face their families. In the back of my mind, and sometimes in the front of my mind, I am positive that the family or friends of the one who has gone before us are thinking, “Why are you still here when our loved one is not? Why couldn’t it have been you that succumbed instead of my brother, sister, mom, best friend?”

This is a strange phenomenon that happens to many of us who are fighting for our own lives. I have heard many other people who are battling cancer talk about feeling guilty for still being alive after watching a friend or family member succumb to a similar disease.

Why? I’m not sure what the answer is to that!

How many healthy people do you know that feel guilty because you have cancer? Or because a loved one passed away? They’re sad, of course. But, they aren’t often wondering why it wasn’t them that got diagnosed with the disease or that passed away instead.

Recently, I was at a dear friend’s funeral. He was diagnosed with lung cancer and, sadly, passed away only two months later. He had kids, including one son who has mental challenges who lived with him. It just seemed so darn unfair that this insidious disease had robbed him of his life and his family of their loved one.

I told one of his daughters that I felt guilty that I was here and he wasn’t. She was astounded that I would feel that way. And, she quickly tried to assuage my guilt. While in my mind, all of his family was wondering why it couldn’t have been me who passed on … I’d had my time …, nothing could have been further from the truth.

Healthy people don’t wonder why someone else didn’t die instead of their loved one. They mourn the death of their loved one, but they don’t wish death on someone else instead.

My friend’s daughter told me she wanted me to keep on living, to keep on advocating on behalf of lung cancer patients everywhere. And, most of all, she wanted me to lose the unfounded guilt I was feeling for still being alive.

That’s advice for every person who feels guilty for surviving when someone else did not. Honor the one who passed away by living your own life well. And, whatever you do, don’t add to your burden by feeling guilty for living when someone else didn’t.

 

 

What’s Your Word?

If you had to choose a single word to define 2017, what would it be?

This question was asked on a forum I frequent. I think your response tells a lot about you, your outlook on life, and where you are in your cancer journey.

 

When last I looked, the following responses had been posted: Horrid, Perseverance, Joy or Hope, Afraid (or a 4-letter word the censors wouldn’t allow).

I don’t know about you, but for the most part, that list made me really sad.

I have been very fortunate, I know. For the most part, I haven’t been too sick during the time I have been battling cancer.  I have been able to carry on my life, very much the same as I did before cancer.

Sure, I get tired easier. And, I carry around a lot more weight than before. And, I have to give up a lot of time going to treatments or scans or doctor visits. I had no doctors when my cancer was miraculously discovered. Now, I have a huge stable of them. And, this no-doctor-going girl is grateful for every one of them.

During 2017, some bad things happened. I had to get out of the clinical trial I had been in for four years. That saddened and scared me. The tumor in my supraclavicle lymph node started growing, in spite of the immunotherapy treatments I had been getting for over four years. There were personal occurrences besides cancer that could make you sad or scared or frightened or even angry.

But, the cancer in my supraclavicle lymph node is no more!!! Fifteen radiation treatments obliterated that baby! For the first time in over five years, that tumor is gone. That’s a great feeling.

And, that’s not all. A tumor in my lung that had been stable for four years, but wasn’t shrinking, shrank by nearly half. That was good and bad news when I read it on the radiologist’s report of my latest CT scan. It was great news that it is shrinking. But, I was a bit sad because I had convinced myself that tumor might just be a scar. Scars don’t shrink.

I had to get out of the Opdivo trial at my 98th treatment. I had looked forward to the centennial treatment for a long time, ever since it looked like I might actually have a centennial treatment. I never dreamed, at treatment 98, that the likelihood of that 100th treatment was going to be dashed. I was devastated when I learned I was being taken out of the trial at #98.

But, after my radiation treatments, I went back on Opdivo. And, while anti-climatic, I made that 100th treatment!!

And, oh yeah, I crossed that magical 5-year survival mark!! That’s a biggie. Most all of the statistics you see measure life by one-year and five-year survival rates. I helped move the bell curve!!!

According to the American Lung Association, the five-year survival rate for lung cancer is only 17.7%. For colon cancer, the 5-year survival rate is 64.4%, breast a whooping and encouraging 89.7%, and for prostate 98.9%.

If you consider only those individuals who have been diagnosed with metastatic lung cancer like I have, the five-year survival rate is only four percent. Four percent. Am I lucky, blessed, fortunate … or what???!!!

Sadly, more than half of all people who are diagnosed with lung cancer die within one year of being diagnosed. I lost some good friends to lung cancer in 2017. There are a bunch of reasons for that, but one of the biggest can be summed up in one word: STIGMA. People don’t give to and the government doesn’t fund lung cancer research like they do other cancers.

We will definitely be revisiting this topic in the future!!! It is one that is near and dear to my heart … and to my survival.

But, back to the topic at hand … what is your word for 2017??

And, perhaps more importantly, what is your word for 2018?

Merry Christmas!!

Merry Christmas, Y’all!!

I want to share The Twelve Days of Christmas with you. My friend Rose, her husband Vic, and I went to see the amazing display at the Dallas Arboretum on Wednesday night. If you have followed my blog much, you know that the Arboretum is one of my favorite places to go. I love to go and spend time in the gorgeous, no matter the season.

My beautiful friend Rose. Isn’t her name appropriate? She is definitely as lovely as a rose.

But, it is especially special at Christmas, when you can enjoy the extravagant display of The Twelve Days of Christmas. When I can go with friends, so much the better!!

Despite the popularity of the song, The Twelve Days of Christmas, I must confess that I can never remember the lyrics. In case you are like me, I will post them here, along with some photos I took. Truthfully, it is a song I never liked much, but I love the display at the Arboretum. I hope you will too!

Merry Christmas 2017

The Christmas extravaganza at the Dallas Arboretum made its debut in 2014. I keep wondering how much longer it will be displayed. Because I never know if this will be the last year it will be seen, I try to see it with new eyes every time I go. I have shown you pictures in blogs from visits I made to the display in past years.

Ho-Ho-Ho

The $1.6 million display took two years to complete. You will see why when you see some of the detail in the of the exhibition.

Santa Claus made his debut this year (or, at least, it is the first time I have seen him). That’s what is so fascinating about the Arboretum. No matter how often I go, I always find new things to enjoy.

In addition to the twelve 25-foot Victorian-style gazebos that house the Twelve Days of Christmas displays, there are 500,000 lights illuminating the park and a 30-foot tall tree is found in the center of the property.

Continue reading Merry Christmas!!

FIVE YEARS!!!! Yes!!!! FIVE YEARS!!!!

You guys!!! This girl just passed her FIVE YEAR cancerversary!!!

When I was diagnosed back in 2012, my first oncologist thought I might live four months. And, yet I recently celebrated FIVE years of life after diagnosis!!!

Donna, December 20, 2017

The year 2017 was an eventful one for me. After four years of immunotherapy treatments with every CT scan showing tumor stability, a tumor in my supraclavicle lymph node (on my neck, near my collarbone) outsmarted the drug and began to grow.

I had to quit my clinical trial after treatment #98. I was so looking forward to getting my centennial treatment. I wonder how many people in the world have received 100 infusions of nivolumab (aka, Opdivo)? I wanted to be among the first.

There were decisions to be made after we got that fateful CT scan back. Initially, I was going to just move into another clinical trial. But, by the time I completed all of the requirements (ie., a biopsy to see how much PDL-1 was present), someone else got the spot I was hoping to fill.

My oncologist suggested that I go on chemotherapy for a time while we waited on something better to come along. I had done chemotherapy. I wasn’t anxious to do it again. To say the least.

I pondered on the idea for several days. I cried … and I rarely cry. I started getting depressed … and I am rarely depressed. I thought, I prayed, I researched other options, including potential clinical trials available in Dallas or Houston or anywhere within driving range.

And, one day I decided radiation might be a viable option. The tumors in my lungs were still stable. Only the one tumor in my neck was growing. It seemed to me that it would be an easy thing to radiate that bugger. (I wasn’t a candidate for radiation when I was first diagnosed because of the location of my tumors in my lungs.)

I spoke to my nurse practitioner about the idea. She said if I really thought that was the route I wanted to go, she would make a referral to a radiation oncologist.

My radiation mask and a wonderful
“lung cancer”
cross my cousin sent me.

My husband and I had an immediate connection with the radiation oncologist. We liked him a lot. And, we completely trusted that he would get the job done on that errant tumor, that I had nicknamed Wayward Tumor.

I had fifteen treatments. I will be blogging about those treatments if I will ever sit down and finish them. The treatments were easy enough. I was a little surprised by the severe fatigue that came around after the treatments were complete. It has taken several months to begin to regain my energy and even so, I tire and stay tired very easily.

Nevertheless, when I had my first CT scans since the discovery of the growing tumor, we got great news! Not only was the tumor in the supraclavicle lymph node gone … yes, for the first time in five years, that baby was no more!!!! … the one tumor in my lungs that the radiologist doesn’t call a scar shrank by half. That tumor had been completely stable for over 4 years, not shrinking or growing, just being.

I have been okay with those results … I’ve often said I was completely willing to carry the tumors around with me as I live my life as long as they just sit there nicely and don’t interfere. So, I wasn’t prepared to hear that it had shrunk significantly. Wow!!! You gotta love a CT scan like that one!!!

We didn’t do anything special to celebrate my five-year cancerversary. In a lot of ways, it was just another day. But, in my mind, crossing that magical line in the sand – it seems many stats are done for one year and five-year survival rates – was special. Very special.

I am well aware that people can and do get to fight the beast again after crossing the five-year mark. The fact is, I am still in active treatment. I have been in active treatment for the entire five years that I have known I had lung cancer. But, it is still celebration-worthy to cross a milestone that has been looming in front of me all of this time.

Next milestone in sight? 10 years, of course!!!!

Lung cancer is a bitch, y’all. It just is. But, it isn’t stronger than we are. If we keep a smile on our face, a song in our heart, and let hope consume us … we beat it. Every moment we do not dwell on cancer, we beat it. I am resolved to be happy and content every day that is before me. In that way, no matter what happens, I have beaten the beast.

Merry Christmas, Y’all.

 

Advocate for Yourself!!

As anyone who knows me knows, I am a big proponent of clinical trials. But, recent events make this post one that I feel needs to be written.

Bud (in the white shirt) – just a month or so before he passed
away. Friends and family met for lunch.

On August 30, 2017, my friend Bud Bivens passed away from stage 4 non-small cell lung cancer. He leaves behind a bevy of great friends and loving family members. He will be sorely missed.

Bud’s cancer was not diagnosed until late June of 2017. Only a week or so before, he had celebrated his 68th birthday. Bud was active. He loved to bowl and to do other activities that kept him moving.

He felt good and seemed strong, but he had developed a persistent cough. He tried to get in to see his primary care physician  (PCP), but she was too busy to make time to see him. Her office suggested that he go to Urgent Care if his cough persisted. It did.

At Urgent Care, an x-ray was immediately ordered and Bud was told to get to ER right away. It was evident that he had late stage lung cancer and needed more help than could be provided by Urgent Care.

Bud was admitted to the hospital. A series of scans and tests were run. Because he was on blood thinnners, the biopsy was delayed for a week. Once the biopsy was done, Bud requested that they test the tissue for genetic mutations.

Treatment could depend on what was found through the mutation testing. If he had a high PDL-1 count, immunotherapy might be a good option. If he had EGFR, ALK, KRAS or other mutations, targeted therapy drugs could be more effective and less harsh than traditional chemotherapy.

Unfortunately, mutation testing takes a couple of weeks. However, while medical professionals waited on the results, Bud was sent to radiation to have several small tumors eradicated from his brain, using a gamma knife.

Clinical Trial … or Not …

I had had such phenomenal results from the clinical trial I had joined 4 years ago that we all were excited and hopeful that Bud could also get into a trial. I did and still do believe that patients get the latest and greatest that research has to offer when participating in a trial.

I also believe that the level of care and attention a patient gets when in a trial is magnified. I loved being in the trial I was in and would readily join another.

However, when waiting on a trial allows your fast-spreading cancer to continue sprialing out of control, a trial is not the best option. Your best option is to begin treatment NOW.

Bud’s treatment was delayed six weeks while all of the trial requirements were being met, such as being cleared by his cardiologist,  waiting on results from the mutation testing, and allowing his body to rid itself of blood thinners, etc.

Those of us who knew and loved Bud were devastated to watch him go from a virile man to one dependent on oxygen in just a matter of a few weeks. He could barely speak because his cough had gotten so bad. His movements were limited because his oxygen levels tanked with the slightest amount of exertion. It was clear to us that Bud was going downhill way too fast.

And, yet, the doctors drug their feet. Weeks passed with nothing being done. Weeks that saw Bud’s health decline more and more.

Finally, a trip to the emergency room resulted in Bud once again being admitted into the hospital. He had still been given nothing to combat his cancer. His doctor was still waiting around to try to get him into a clinical trial.

Some of us worried that this trip to the hospital was the last one Bud would take. His health was continuing to decline. Day by day, even those with him every day could see that he was failing. He was losing weight, couldn’t eat, and the cough was relentless.

A forthright doctor told Bud that if they couldn’t get his oxygen levels up to the high 80s, or preferably, into the 90s, they would have to intubate. Once intubated, the expectation was that it would fall to his family to decide whether and when to pull the plug on their dad’s life.

The idea of putting his family through that terrified Bud. He never showed much fear in the face of his disease, but making his family face such decisions was the one thing that I saw bring tears to his eyes.

Chemotherapy … Treatment at long last

While in ICU, the doctors decided Bud might have pneumonia hiding behind his tumors so they started heavy duty antibiotics. The antibiotics meant that Bud was no longer going to be eligible for the clinical trial so, at long last, chemotherapy was begun.

Bud rallied. Whether the chemo or antibiotics or both worked, we don’t know. But, Bud improved enough so that he was able to go back home. We were all elated. There was still hope.

Unfortunately,  he wasn’t home for long. His oxygen levels tanked. Even a level of 70 was a dream. Somehow, he managed to survive it dropping down into the 40s. When, despite valiant efforts, it couldn’t be brought up to a sustainable level,  Bud made his last trip to ER and, subsequently, to ICU.

He refused intubation. He was given morphine in increasing amounts. He passed away peacefully on August 30, 2017, surrounded by his loved ones. Bud will be greatly missed by many of us.

His brief battle against lung cancer makes me ready to push even harder to make people aware. First, if you have shortness of breath or a persistent cough, get it checked out. Sooner rather than later.

And, the point of this blog entry … we will never know if Bud’s life could have been extended or saved if doctors hadn’t drug their feet. It seems his oncologist was more interested in getting him into a clinical trial than into treating him. It seems he was viewed more as a potential subject than as a man whose cancer was quickly ravishing his body.

I hope through this blog entry readers can see that those who cared about Bud could see him declining day by day, even hour by hour. And yet, his doctor told him that she was shocked by how aggressive his cancer was. She had no idea that it was taking over his lungs so quickly.

Was she blinded to it because all she saw was a subject for her clinical trial? I hope not, but I am fearful that’s the case.

If you are a patient or a caregiver, please. Do not be patient. Do not rely on your doctor or medical team to know or do what is best. You and your family and friends may not be trained in medicine, but may see things in a more realistic way. If things don’t seem right or don’t seem to be moving fast enough or in the right direction, make waves. Make BIG waves. If one doesn’t listen, move to the next.

Again, none of us know if Bud’s life could have been extended if they would have started treatment within a week or two instead of after 6 weeks. But,  I will always believe more, much more, could have been done for him.

His experiences have reiterated to me that I care more about what happens to me than doctors do. I know how I feel and I  know if something doesn’t seem right. And, I won’t sit idly by while doctors wait for who knows what.

I hope you won’t either.

RIP, Bud. You are missed.

 

Still here!!

Despite best laid plans, it has been a long time since I wrote a post. It isn’t because i have been too ill that I haven’t been here. I have been too busy living life! Praise God for miracles … and thanks to modern day medicine.

I will be getting Opdivo infusion #97 on Monday. Wow!!! It won’t be too long before we get to throw a centennial celebration! I wish i was better at planning parties, because that 100th infusion of immunotherapy will certainly be worthy of celebration!

I am writing this on my tablet. Unfortunately,  i don’t think i have access to many of my photos. The reality is that i haven’t really taken lots of pictures lately. Occasionally,  i pull out my phone to capture a memory, but i haven’t taken my good camera out in search of subjects of interest in quite some time. I need to rectify that one of these days!

Today, we celebrate the anniversary of Divo and Espy, the twin kitties, coming to live with us. They have been the perfect additions to our family. Cotton tries to terrorize them on occasion, but mostly, they ignore her. Divo is named for the drug that is keeping me alive. Espy is short for Esperanza,  Spanish for Hope. I usually have trouble thinking of names for my 4-legged family members, but these two were easy!

Speaking of 4-legged family members, Cotton, an 8-year-old American Eskimo Dog, and Barney, my 7-year-old Sheltie (Shetland Sheep Dog), continue to add joy to my life. The three of us play dog agility together. I credit them with helping keep me alive. They have ensured that i get a lot of exercise and that i have much to focus on besides the fact that I have cancer. They are not just my teammates, by any means, but it has been incredible playing a sport with them.

As for my health, i have suffered a couple of set backs in recent months. At my last scan, i developed a severe allergy to the iodine contrast they give me. I thought i was having some kind of strange and misplaced panic attack as I could not catch my breath. I was really embarrassed that i would be having such a reaction after having many, many scans since my cancer was diagnosed. So, i didn’t tell anyone how I was feeling.

Fortunately,  when i went to the cancer clinic to have my port deaccessed, it was immediately evident that i was having problems. The chemo nurse quickly diagnosed it as an allergic reaction and got benedryl and lots of liquids into me right away.

It was touch and go for an hour or so (i didn’t realize until later how deadly an allergic reaction can be), but i was much better after several hours. I won’t be getting the iodine contrast in the future unless absolutely necessary. Now that we know i have severe reactions to it these days, i will be pre- and post-medicated before i am ever given the solution again. Whew!! That was pretty scary. Thankfully, it was scarier after i was all better and was reading about it than it was when i was actually going through. I had complete faith that the care team had everything under control, and they did!

More recently, my blood test results showed i might have developed moderate kidney disease. I was really scared by those results because i would have to quit Opdivo if one of my organs started failing. I really thought I might have come to the end of the race after beating the odds for the last 4-plus years.

My oncologist told me i needed to increase my electrolytes before my next appointment. We needed to see if my kidneys could be rehydrated and begin functioning properly again. (I never realized they were not functioning as they should. There was no pain, blood, lack of urine production … the only indicators were screwed up levels of creatinine, LD, and eGFR, as shown by my blood tests.)

Several of my friends and my son bounced into action. They know i am a procrastinator. To combat that, they brought me foods that would help raise electrolytes, all kinds of drinks to try, and provided unbelievable support (sometimes in the form of mother-henning me to ensure I was drinking enough to get those kidneys hydrated). I can’t begin to say how grateful I am to have friends and family who really do care and go to great lengths to try to make sure i stay among the living.

My care team, my friends and family, and I were holding our breath as we waited on the blood test results at my next visit (i go every 2 weeks). I was a little nervous since we had had a 3-day Memorial Day agility trial where i had played hard, worked hard, and done plenty of sweating. Had I drunk enough water and Gatorade to keep my kidneys happy?

My oncologist, nurse practitioner, researcher, and I had a small celebration when the results were in. When you go to the doctor every two weeks for four years, the staff become friends. We were all elated to see that my creatinine level was just above what is considered normal. Close enough … and going DOWN, not continuing up!! Whew!!!

Fortunately for me, my friends won’t let me rest on those good results and return to life as it was before. I am still being brought different sports drinks to try and i am strongly encouraged to keep drinking them. I am one lucky girl to have such awesome and caring friends.

So, despite a couple of scares, my life is full. It mostly revolves around activities with my dogs and my agility friends, but i have recently been fortunate enough to be interviewed for several articles that will be coming out soon about lung cancer and immunotherapy. In August, i get to return to Chicago for a summit on immunotherapy. I am looking forward to that! I had a fabulous time when i was there last time. This time, i will have an opportunity to visit with a friend who lives there before i go to the Summit. I am looking forward to both very much.

So, here’s to living life!!!  Cancer is part of it, but certainly not all of it.

Just a Line on Paper

I participate on several different cancer-related forums. I don’t go seeking support for myself, but I do try to add hope, comfort and/or information to others who go the sites, especially for those who are newly diagnosed with cancer. I well remember how mind-boggling it was to get the news that I had cancer. If I can make it even a little easier on others facing that news, then I want to do so.

I find that, even though I don’t know most of the people personally who participate on the boards, I care for many of them deeply. When one gets bad test results or is having a difficult time with treatments, it hurts me. If we learn that a regular contributor has passed away, I shed tears. And, on the flip side, when someone posts that they are now NED (no evidence of disease) or got into a coveted clinical trial or had scans showing stable tumors, my heart sings. It brightens my day.

Chances are good that I will never meet the vast majority of people who participate on the forums. We live all over the world. Many of us are as different as night and day. Our one commonality is that we (or a loved one) have cancer.

Someone wrote today that she was nothing more than “a line of type” to me. Indeed, we have little in common and she is definitely not one of my favorite forum participants. I find her a know-it-all and a very rude individual who says (types) hurtful comments to people nearly every single day. I think she’s trying to be funny most of the time. But, that’s not how it comes across to many of us.

I’ve often thought that she has very thick skin because people often disagree with her. Or, worse yet, they just ignore her.  That’s what I usually try to do.

But, this blog entry is not about her … it is about the comment she made about just being “a line of type.” I disagree vehemently with that statement.

We may or may not know one another’s names, but we actually know a lot about those of us who participate regularly. We know which forum members share similar values and which ones don’t. We know who is in remission and who is in the fight of their lives. We know many inner thoughts that would likely not be shared if we were face to face. It feels safe to share what we really think and feel when we can’t see one another and we are known by a screen name only.

I might not know you physically, but I know you emotionally and psychologically. And, in my opinion, that is who you are. Not what you look like on the outside, but who you are on the inside, when you think nobody knows you.

I have a very, very good friend. We have been friends since 1999. We have gone through her getting a divorce, our kids getting married, having babies, and in some cases, getting divorced. We’ve gone through my cancer diagnosis and treatment. I know things about her and her family that her very best friend doesn’t know. Because I am safe. We have never met. We have never spoken on the phone. And yet, if I really needed her, I feel that I could go to her and she would be there for me. I know I would be for her. In fact, we HAVE been there for one another. We’ve shared joys, tears, sorrows, and laughter. We’ve shared life with one another.

So, there is great fallacy when one thinks they are but “a line of type.” You’re kidding yourself if you think the people on the other end of your posts don’t know who you are. If that were true, online support groups and even Facebook and other social media would not work.

In my opinion, this is important to remember. Adults bully the same as children do. And, it is wrong, regardless of who does it. There is a live person reading comments made on forums or other social media. Some of them are in very vulnerable places, especially if they were recently diagnosed with cancer or how just learned that their cancer has returned or that it is no longer treatable.

Read and reread before posting something. Think about what you wrote. Will it help the person to whom it was written? Will they have to wonder what you meant by  what you said?

None of us is just “a line of type.” Don’t treat one another as if that was the case.

 

I have cancer, Cancer doesn’t have me

I wrote the following in response to an article we were discussing on WhatNext. If you want to read the article, you can find it at http://www.curetoday.com/community/bonnie-annis/2016/04/as-a-cancer-survivor-making-the-choice-to-get-busy-living. It is titled, “As a Cancer Survivor, Making the Choice to Get Busy Living”

I have been interviewed several times lately and the interviewer always wants to know how it felt to be told I had stage IV lung cancer with an estimated 4 months to live. I always feel like my answer disappoints them on some level.

My husband and I discussed how we were going to face this as we were driving to my mom’s house to break the cancer news. We both agreed that we were going to make it a “no big deal” thing to her.

That’s what we did. And, that’s how we lived. I never gave up life. There were times during chemo when I gave up a few days while fighting the worst of the side effects, but those days were limited.

My oncologist could not believe that I wanted to know if I could keep playing agility with my dogs, but I never quit. I might have missed a class here or there, but we didn’t leave the sport.

Most of my local friends have totally forgotten that I have stage IV lung cancer. I was at church the other day with a friend who told me another cancer survivor was joining us. She gently explained that I might want to curb some of my exuberance for life because this girl has a late stage cancer…

She was so dumbfounded when I reminded her that I do too!!!

As it turns out the girl who joined us is a lot like me. She is a runner and refused to give up her running. The hospital has been attaching all sorts of electrodes to her and a team follows her while she runs. They are monitoring how the exercise impacts her and her cancer. I have not gotten an update on her, but she told us that she expected to be getting a NED diagnosis the following week!!!

I feel like I alienate some people who are fighting cancer (or however a person wants to term it) because I have chosen to live life. I told the interviewer that cancer has made me nearly frantic to keep my calendar full of activities that I love to do. Down days are something I try not to have.

Because I stay so busy doing things I love to do, I forget for long periods of time that I have cancer. I have cancer, it doesn’t have me. I hope it never will.

The Fraternity No One Wants to Join

Last week, I attended a regional HOPE Summit that was put on by the LUNGevity Foundation. My (nearly) 86-year-old mom attended with me. After spending a full day of learning and camaraderie with all of us lung cancer survivors and caregivers, Mom made a comment that resonated with me. She said, “It’s almost like you are all in a fraternity or a sorority.”

Yes. That is so true. We share a commonality that no one wanted and no one asked for and certainly no one sought. And, yet, that monster no one wanted, lung cancer, has brought us together in a way nothing else ever could. And, I think without exception, we are all thrilled to know one another.

Have you thought of that benefit? Do you go places where you meet others with a similar diagnosis?

In so many ways, it takes another person who has been diagnosed with cancer to understand what it is like. People can imagine or think they know, but only someone who has heard those awful words actually, truly know.

I think meeting other people who are surviving cancer helps bring hope to all of us. Maybe it gives just the push someone needs to climb out of depression and to give life another chance. For sure, it means that we can exchange war stories and know that the person hearing them knows just exactly what we are saying, even if our chemo brains make us forget the right words sometimes.

Living Life

Once we hear those words, “You have cancer,” we all seem to react differently. I personally took on living with a vengeance. People laugh when they see my calendar. I keep it full. If there is an open day, I generally come up with something to fill it up. I want to enjoy every single minute of every single day. And, for the most part, I am hugely successful in that endeavor. If I am not laughing and smiling and having fun, I just might be asleep!

I have many friends who accepted the challenge of cancer and vowed to give it a run for its money!! They are strong warriors and usually spend a lot of time advocating on behalf of themselves and everyone else who has been diagnosed with cancer. They are using the time they have to make a difference in their lives, in the lives of other cancer patients, in the lives of everyone who comes into contact with them.

Thank God for these people! I think a lot of us want to give back when our lives have been extended beyond expectations. I wasn’t supposed to live more than 4 months. Wow! I have a story of hope to tell and tell it I will!

Or not…

I know other people who learn they have cancer and it seems like a dark cloud descends on them. They lose their energy and their zest for life. It appears that all they think about is their cancer. Sometimes, these are people who are diagnosed with early stage and treatable cancer. Long after their cancer has been obliterated, they are still giving it power over them. They moan, groan and complain because cancer came into their lives. They feel sorry for themselves and shorten their lives by worrying constantly about the fact that they had cancer … and that it might come back someday.

I always wonder, why? Why give cancer so much power? I get it if you are so sick from chemo and/or radiation or surgery that you can’t continue living life. I’ve been there. I lost days of my life when I was getting chemo. I could do nothing besides curl up on the bed, completely miserable and wondering if I really wanted to continue. But, those days would pass in a bit and once more, life was worth living … and live it I did!

My own personal perspective is that people who give up the will to live life, who concentrate more on what their new normal means (and what they can no longer do) than on trying to make the best of the time they have, are losing to cancer long before it robs them of life.

Here’s the deal. When we dwell on something, it grows bigger and bigger and bigger. It takes on a life of its own. It can begin to consume you. If you’re dwelling on living life, then joy and passion are what consume you. But if you concentrate on what you lost, no matter how small or significant that might be, you give up your peace and trade it for worry, fear, sadness, and/or anger … or maybe all of those.

Blessings

So, I choose to keep my focus on the blessings of cancer. Yes, the blessings of cancer. I joined a fraternity no one wants to be a part of … but now that I am a member, I am not so sure I would ever want to leave again. What??? Am I crazy????

Well … maybe. But, here are some of the things that have happened to me as a direct result of having stage IV (yep, terminal) lung cancer:

 

  1. As I noted already, I have made friends that I would have never met if it were not for the fact that I have lung cancer. I wouldn’t trade knowing them, not even if it meant I could somehow give away my cancer diagnosis.
  2. I am much stronger than I realized I was. It took cancer to teach me just how much strength I have. Some disease is not going to overpower my thoughts, even if it does try to overpower my body.
  3. I have so much more joy than before I was diagnosed with cancer. I guess when I came face to face with the reality that my life could be over in a matter of months, I began to appreciate what’s really important in life. People, moments, memories, time. God’s handiwork. Every single day, every single hour of every single day, I am thankful for the fact that I am alive and enjoying what God has given me.
  4. One thing cancer has done is rob me of patience. I have no patience with complainers or with people who can’t look past their circumstances to find happiness. I remove myself from their midst and that has helped make my life much happier!
  5. Not only have I made friends with others who share a cancer diagnosis, I learned who my true friends really are: the ones who didn’t just keep on living life without giving me a second thought, but the ones who I know would be there for me the moment I needed them to be. Sadly, for me and for most people who are diagnosed with cancer, I learned that many of the people I thought were good friends really are not. But, the flip side is that I learned who my real friends are. And, that’s a very important lesson.
  6. I learned how to enjoy life. I never was much of a worrier. I sure am not now. Worry is a time thief. I have no time to share with worry.
  7. Chemo brain has even lent a benefit. Thoughts don’t get a very tight handle in my brain. Sometimes, even most of the time, that can be frustrating. But only momentarily. I don’t hold onto hurts or wrongs … I don’t just forgive them, I FORGET them. Totally. So, they don’t interfere with my pursuit of happiness 🙂  I don’t try to forget them, they just don’t stick in my mind!

Challenge

My challenge to anyone who reads this is for you to begin living life like you might not still be here tomorrow. Because, the truth is, you might not be. A cancer diagnosis brings that fact to the forefront of your mind. But, NONE of us is promised tomorrow (or even the next minute). We need to start living like today might be our last day here.
What would be important to you if that was the case? Would you still be mad that someone cut you off in the grocery store line or on the highway? Would which new dress to buy be foremost on your mind or perhaps spending time with loved ones would supersede.
Just think about it. Most of what frustrates us or makes us mad is really small in the grand scheme of this thing we call life. We’re giving up blessings every single time we let something rob us of our happiness. Right? Or do you disagree?

Tribute to my Dad

It was in September of 1976 when my 48-year-old dad went for a routine physical, as required by his employer. No one thought anything of it. He was in great health, other than a painful knee that had arisen recently after a long drive from Washington, DC.

Life was great. He had a job that he thoroughly enjoyed and at which he excelled. Mom had recently gone to work at the same savings and loan where he worked. My brother was doing well in high school and I was married and had recently had a baby boy.

Imagine our surprise when he got a call from his doctor. The chest x-ray had some suspicious spots that needed further investigation. Dad had smoked cigarettes until I was a teen, but at Mom’s insistence, he had switched to a pipe many years previously. We didn’t think he was a prime lung cancer candidate, but the biopsy showed he not only had lung cancer, he had Stage IV lung cancer. He was given six months to live.

He had adenocarcinoma, like I do. It is a cancer that smokers get, but so do non-smokers. In fact, it is the most common type of lung cancer seen in non-smokers. Adenocarcinoma is found in the outer parts of the lung. According to Cancer.org, more women than men are diagnosed with this cancer. Furthermore, it is more likely to occur in young people than other cancers.

Cancer.org says that adenocarcinoma is a slow growing cancer and that it is more likely to be found before it spreads. Unfortunately, my experience refutes this statement. Just about everyone I know with adenocarcinoma of the lung was diagnosed with Stage 3 or 4.

Even though it has been nearly 40 years ago that we received the news that my dad was very sick, I still remember hearing the news. Needless to say, my mom and I were shocked and devastated. Dad was stoic. Then and for the rest of his life.

I hadn’t really thought all that much about my dad and his experience with lung cancer. I mean, the knowledge that he had the same kind of cancer I do comes to mind, but his actual fight against the beast hasn’t been something I have really dwelt upon. Until recently.

For some reason, I was thinking about my dad’s journey against lung cancer. His was much shorter than mine has been. Thankfully, I was able to get into the clinical trial for Opdivo when my cancer threatened to kill me. Dad wasn’t so lucky.

But, here’s what I remember about my dad’s fight. He was working in downtown Dallas. Because his leg hurt so badly, someone else was driving him to the office in the mornings. It turns out his leg hurt because his cancer had metastasized to the bone there. The doctor told us lung cancer commonly spreads to the bones – often to the knees or elbows. I always worried when I had a pain in one of my extremities after hearing that.

Because he was being driven to the office, Dad needed a ride to his treatments. Unlike in my case, he was able to get both radiation and chemotherapy. Also unlike in my case, no one went with him to his treatments. Never once did any of us accompany him to his chemo treatments or to his radiation sessions. Never once did it ever occur to us that we should (or not that I remember anyway). I would pick him up at his office and drop him by the hospital for his treatment. My mom would come pick him up when his treatment was over. We did that for months.

The radiation didn’t bother him much. But, that chemo sure did. It made him deathly ill. So much so that I called his doctor and asked him why in the world they continued to give him the drug when his prognosis was so awful. The doctor told me that Dad would hear of nothing else. If there was even the smallest chance he could recover, he wanted the treatments, no matter how sick they made him. Watching my dad suffer, I vowed that if I ever had cancer, I would do radiation, but I would not do chemotherapy. Amazing how we change our minds when we are actually faced with a life or death decision.

My dad went to work every day during the time he was in treatment. I do not know how he did it. I was talking to my mom about it tonight. She said, “Well, he didn’t do anything you didn’t do.” But, I think he did. I don’t know what drugs he was given, but I suspect they were harsher than the ones I got. Or, that the overall treatment plan was not as good. Surely oncologists have learned much in nearly 40 years.

Dad worked until 3 weeks before he died. I was lucky enough to get to retire on medical disability after I had fought my cancer for slightly over one year. That means I have had nearly 2 years of life without the obligation of going into the office.

I might be wrong since I was no longer living at home when Dad got sick, but I do not recall him ever missing a day of work. He got his treatments later in the day so he didn’t even miss those days. I didn’t know then what I know now. At least for me, I was deathly ill for several days after a chemo treatment. And, so exhausted that a simple walk was very, very difficult. Chemo brain is a real phenomenon as well. I often missed a day or so after a treatment. And, I generally left the office an hour or so early. And, the demands of my job were nowhere nearly as huge as his were. He was making multi-million dollar investment decisions.

I remember some of his coworkers being in awe over how he continued to work, despite his illness. I think he got a bit grouchier with them. I know he did at home. At least some of the time. I understand that now much better than I did then. He had to have been reaching into himself for reserves most people simply can’t access. It must have taken every single bit of his strength and willpower to go in to work every day and to actually be a productive employee. By the time he got home, it is no wonder that he could no longer restrain himself if something irritated him. He had to have been totally spent. Along with totally ill, much of the time.

My cancer is in both lungs and spread to lymph nodes near my collarbone. I have not ever had any pain associated with my cancer. Dad, on the other hand, had the bone metastases which were very, very painful. I can’t remember any longer whether he had radiation to those tumors on his knee and, if he did, whether or not the treatments worked to eradicate the pain.

When Dad was finally so weak that he could not go to the office any more, he was also so weak that he could barely leave their bedroom. My grandmother came to stay with him, while my mom, at his insistence, continued to work.

Soon before he died, he lamented to my mom how awful it was to be in the state he was in. He told her, “I can’t live and I can’t die.” It was frustrating to him. I can understand that. I don’t really want to be alive past the time that I can actually live. When I can’t go out and play with my dogs and go places with friends, etc., then, I hope God calls me on home.

Three days before he died, he received a visitor from the office. The president of the savings and loan where he worked dropped by with some investment questions. Amazingly, Dad was able to give good advice. I was over there later that night. I had tax questions. Dad, a CPA, had always completed our tax returns for us. Since he was so ill, I was preparing to do our return for the first time. Between bouts with him fading into unconsciousness, I asked him all of the questions I had for completing the return. We were audited that year. His advice all held up.

The night he died, nearly 6 months to do the day of being diagnosed, he was still lucid enough to know that touching my mom’s hair was taboo. He accidentally brushed against it that night. And apologized. Amazing. My mom also heard him answering questions that he was being asked by God. Scoff if you like. Or say he was hallucinating. This man believed strongly in God and in Jesus Christ as his Savior. I have no doubt but that he was standing in God’s presence when Mom heard him answering. That has always been somewhat comforting to us. That he was in God’s presence. Even though the answers my mom heard him give were along the lines of, “I don’t know.”

I wasn’t ever particularly close to my dad after I was about six. He was blessed with a son about that time and he sort of forgot he had a daughter. He was very, VERY partial to his son. And didn’t try to cover it up. Maybe that is the reason why I never really sat and thought about all that Dad went through and what a courageous man he was the last six months of his life. No matter what his and my relationship was, I have to say, I have not seen many who have lived and died with the dignity he did.