I have terminal cancer. That’s what my doctors call it. My first reaction was fear. Sheer terror of the unknown with many questions, all of them unanswerable. How long? What will happen? What will it be like? Will the pain be unbearable? What will happen to my family? How long will I be sick? However, fear and anxiety cannot maintain at heightened levels for long periods of time. As time goes on, I’ve learned to manage the panic episodes. I’ve learned to roll with it some, I guess.

When I was first diagnosed, many advised me to try to live in the ‘present day’. To live life ‘one day at a time’ and just enjoy what I’ve been given for that day. At first, that didn’t make any sense to me. I felt I was already living life in the present sense- living one day at a time was all any of us could manage. It took a lot of tears and hard work, and finally I got pretty good at it. What ‘it’ really meant was to live life without expectation of living life beyond the next three months. But, how do you live completely in the present for extended periods of time? Is it really wise to never look beyond this year or even past today? What I don’t know how to do is stuff all my hopes and dreams into short term hopes and dreams.

I still have terminal cancer; I’ve just changed the way I think about it. I like to think about it as ‘chronic cancer’. Something I’ll always have or always deal with, and will most likely die from; however, not something that I’ll die from immediately. As they get better at treating cancer more and more people are in this phase of cancer. And it comes with it’s own issues. In a way, survivors of ‘chronic cancer’ are new pioneers.

It’s a difficult world. A place where long-term plans aren’t discussed. Rarely do I allow myself to think much past 5 or 6 months ahead. I never think about next year or what I’d like to do in a year or, way too daring, 5 year from now.

I remember when I bought my car I knew it would be my last car purchase. I didn’t even think I would live to see a day when I needed new tires. I’ve now replaced the tires completely 2 times and have 114,000 miles on my car. Granted, many of those miles were obtained seeking treatment for cancer— now I wonder if someday I’ll have to replace my car. Geeeez, wouldn’t that be something?

My dentist has mentioned he needed to replace a crown; I’ve put it off, deep down thinking that would be a waste of time and money and I wouldn’t be here long enough to truly need it. Maybe that is one of those things I can get out of. The same with contacts. I never buy a years’ worth of contacts anymore–Just this year, I bought a 6 month supply and felt proud I felt that secure.

Some things I do as a secret challenge to myself. My neighbor and I both planted peach trees a year ago. He is a retired fire-fighter and a very dear soul. We both laughed and challenged each other that we would try to live long enough to make a peach pie. Through the laughter, down deep, I meant it…. I like peach pie.

There aren’t support groups for people like us. Those of us living with chronic terminal illness. Those of us who live life in 3-4 month increments. No long term thoughts, plans, or dreams. It is a different and difficult world to exist in. It seems unnatural and I’m not sure it is totally wise. There has to be some form of balance between accepting this terminal cancer residing within and still having hope of life beyond next year or even life 5 years from now. I just haven’t found it yet.

OK, Soooo sorry it’s taking me sooooo long to get back to writing. I’ve been in Chicago all last week at the National Lung Cancer Partnership Advocacy meeting/ASCO. I really didn’t stay for ASCO–it’s too busy and too big of a meeting for me anymore. I was still there 4 days and wow! it was a great meeting for advocates!!!!

This was the first lung cancer advocacy meeting of it’s kind. The Partnership was able to bring over 50 advocates from 24 states, including different lung cancer organizations. Advocates from caretakers, friends and patients came together with the common goal of changing the current stagnation of lung cancer research and awareness to moving in the direction of growth in research and treatments as well as awareness, support and quality of life for lung cancer patients. It was inspiring. And exhausting!! And rewarding!!! And it was an honor to be part of such an event.

The different groups that were there were the National Lung Cancer Partnership, which hosted the event, and Joan’s Legacy, Lung Cancer Alliance, LUNGevity, as well as new ones such as The Bonnie Addario Foundation, Beverly Fund, The Lung Cancer Foundation of America and more. It was exciting to see what has happened is recent years!! I remember when there was really only ALCASE - they became Lung Cancer Alliance, and another group became the Caring Ambassadors and do a great job with information and support of lung cancer patients. When I was diagnosed in 2001, we really didn’t have any advocates ready to get involved. At lung cancer meetings there might only be one or two advocates and nobody to collaborate with. This is big news for the lung cancer community and well over-due.

So coming home, first, I collapsed and slept, and slept. When I had time to reflect about what had just transpired I was truly grateful and more motivated that ever. I am inspired at the interest and involvement of so many others. Advocacy has truly been my passion and I would feel so over-whelmed at the magnitude of how much was needed, all of it equally important. So now, it’s just simply wonderful to have others, to share the load, to grow with, to collaborate with, to support, to be in the same boat with and somehow, just knowing that helps.

We are NOT alone; We are working for the same common goal and that is to change the way lung cancer is viewed, funded, researched and treated in this country. TOGETHER, we WILL make a DIFFERENCE for LUNG CANCER!

It a gorgeous morning here in Kentucky today. A day that has just the right amount of sunshine, the right amount of crispness to the air and the right amount of warmth with just a hint of a sweet breeze. All my flowers are blooming and the birds are singing in the back ground. It’s a day I would like to be spending the entire day outside — but that is impossible, so I’ll just gaze out as often as I can.

Before cancer, before realizing that I could and most likely would die very soon, I never really paid much attention to days like this. I just went on about daily hassles and busied myself doing the routine chores of the day. I just didn’t pay close attention to the small, yet precious beauties of each day. I have a bird house in my back yard, and wake every morning to the sound of the birds singing…. and now, I listen.

I guess that is where the saying… ’stop to smell the roses’ came from. From people realizing they were taking for granted all the really simple joys that surround us each day. We stay so busy and ‘on schedule’ that we miss much of the pleasures that God intended for us to enjoy.

I often wonder why did it take cancer for me to realize this? I guess it wasn’t really cancer– it was the thoughts of not being here to enjoy it any longer. Then you begin to realize who, what and how much you will miss. Then the haze lifts and everything becomes clearer. The small things become important. Time with loved ones becomes precious. Cancer was just the root of the thought.

That is one thing I still have to work on. Time with loved ones. I have family and friends I still don’t visit as often as I would like. It’s not that I don’t think about them or want to…. time and schedules seem to get in the way. That’s a poor excuse. I have a grandmother who will be 93 and a granddaughter, Grace, who will be 7 this week!! And they are who I would love to be spending time with. I have school-age friends who live close by and yet I haven’t been able to see them lately. Maybe I’ll dedicate this summer to visiting and spending time with friends and family…. even if it’s just a cookout in the back yard.

And yes, this year I planted roses… they are beautiful…. and yes, I think I’ll stop long enough today to smell the roses.

Scans are good again. Or, at least, what we expect. The area in the left lung looks as it is ‘supposed’ to look.—possible scar tissue with probable hole in the middle. It’s never totally conclusive, because we are looking at images in different shades of gray and speculating on what the shades of gray mean.

The only way to tell for sure is to open it (me) up and get some tissue. No thanks, I’m content to just speculate a while longer. The speculation becomes more certain as time goes on and the size, shape and shade morphs more toward benign and less toward active malignant activity.

It has always seems so odd to me that something this important—cancer—a.k.a. life or death—doesn’t have a more definitive plan of discovery and action surrounding it. Maybe it’s just me, but I often feel that the choices of treatment aren’t so good and I would appreciate a more black and white report. Sometime along the lines of “well, this cancer is gone for good and we’ll never see any signs of it again-ever.” That would feel better anyway.

We all know that is only wishful thinking. Cancer is not an exact science, and lung cancer certainly doesn’t have a good track record. So my job is to learn to live well in 2-3 month increments. I think for the most part I’ve been able to do this pretty well. It’s especially easy to do so after getting a good report than an iffy or bad report.

So, today, I’m in Philadelphia with my mom. We are attending the Oncology Nursing Society Meeting for the National Lung Cancer Partnership booth and she is here to keep me company and hang out together. And today, we are going to have fun, laugh and relish in the idea that all is well. Nothing else matters.

Deep Breath, Sigh and Relax.

As I think about what I want to write about today– the obvious answer is my upcoming scans.

Scan day should be routine now. And in many ways it is. I know where to park, where to check in, on what line I sign my name. I know which hall to walk down, where to sit and how long the wait should be. I even know the CT techs and in some strange way it feels like they are friends I just haven’t seen in a while. I know where to go afterward to have my labs drawn. Then it will be time to eat some lunch. After lunch it’s time to go to the oncology unit to see Dr. Carbone. Truth time.

All of that is routine. What I can never get used to or feel comfortable with is having cancer. What will Tuesday’s news mean? How will my life change? Will I get the OK to go on living life as I have in the past for another 3 months, or will this be the day we start searching out new ideas, treatments, directions? I dread the day I hear the words, “Well, we have exhausted all possible options.” I know that sentence it out there somewhere. I know patients that have heard that line before. It’s the ‘what ifs’ I can’t get used to.

I try and try to tell myself it’s useless to worry. I try and try to reason that if they find more or new cancer on Tuesday we will be able to successfully fight them off just as we have been able to do in the past. I use little key thoughts that I try to repeat to myself when I feel the anxiety taking over. “I’m just as healthy after the scan as before the scan-the only thing that has changed is knowledge. I’ll be OK. This is just another scan. I’ve heard good news more times than bad news.” None of that helps very much the week before a scan.

But the truth is, I don’t know. I don’t truly know, in my heart, that I can do it again. I don’t know that I can face it again. Each time it’s a bit harder. Each time I lose a bit more of me, of my ability to continue to live normally. Each time the pain worsens and goes up yet another degree. Each time I’m a bit more short of breath and more tired. Each time gets closer to completely losing my ability to work. What will happen then?? Each time we use up another option.

Then, at the end of the panic, I know I will do it–I will get through it, again, if necessary. I will do whatever I need to and I will be OK. If nothing else, I will because I don’t have any other choice. Choosing, at this point, is not an option. There just is no other choice.

However, I still worry. And I know I will continue to worry until I hear how the next scan looks.

Last evening was prom. Alyson’s prom. She was absolutely beautiful.

This will be her last prom as she is planning to graduate early. The school told her she couldn’t go to her Senior Prom if she chose to graduate early. It is some form of punishment because the school no longer is able to collect money for her after she graduates. She would rather graduate early.

I couldn’t help but think back about when I was first diagnosed. She was 10 years old. Just a little girl. She didn’t quite realize what all was going on, or the severity of it all. Thank goodness. Now she is a beautiful young woman. And I’ve had cancer over 1/3 of her life. I wonder how that has changed and shaped her. How is she different because of cancer?

I never thought I’d be here to see her in prom dresses. And I realize how very fortunate I have been. So much has happened with my girls since this diagnosis and, along with it, the threat of dying quickly. That was one of my biggest fears when I was first diagnosed-the possibility of leaving my precious daughters before they were ready.

The best part of seeing her in her Prom dress is knowing that she is just as beautiful on the inside. I have never met a more kind, sweet, good kid. She is always a pleasure to be around, helpful and funny. Her smile can change the world. She has good values and high morals. And she cares about other people. She hates conflict and is always the peace-maker, always trying to make good of some bad situation. That’s Aly. And I’m so proud to be her mom.

One thing I know for sure, I’ve never seen a more beautiful prom girl!

Sometimes, I wonder if I’ll ever get used to having cancer. Logically, it would seem that at some point dealing with this might become ordinary, or at least predictable if not routine.

I was scheduled for scans next week. May 6th. Scan Day. It’s been on my calendar for the last 4 months. I am always conscious of it. It’s always, always in the back of my mind. I never forget the date for Scan Day. I forget my friends’ birthdays or other very important dates, but not Scan Day. They tell you once before you leave the doctor’s office and immediately you memorize it. It’s the date your life could drastically change directions; it’s the date they either tell you that you can continue to live life for another couple of months or that for the next several months you’ll be fighting for your life.

I try to be relaxed about it. I act like it’s just another day. I try not to think about it, pushing thoughts of the day getting closer out of my mind. I say the date casually with a calm tone when someone asks when my next scans are. Only those closest to me know that I’m anything but calm. I’m terrified.

I clean my house thoroughly before Scan Day. I know that when I come home that night I might not think about cleaning again for weeks, or even months. I try to catch up any loose ends, file all insurances, pay bills ahead of schedule, fix anything that needs fixing, grocery shop, buy toilet paper (now, that’s a priority!) all the while trying to act as if it’s all normal, everyday behavior and has nothing to do with the upcoming scans I have been obsessing about.

So why, then, when Vanderbilt called to tell me they had moved my appointment and scans to another week did I feel so let down and aggravated? The tension is hard enough without prolonging it!!! I have been preparing myself for Scan Day since the day I walked out of the office 4 months ago.

I’m not sure I can hold my breath another whole week.

No, I’m not used to having cancer, not even after nearly seven years.

OK,  well, I had a computer down for a couple of days; then was on a work-related trip to Orlando for 3 days.  I’m back now, however. 

The trip was good and interesting. It was about Chest Pain Centers and how hospitals can put protocols in place to help patients survive heart attacks better.  They discussed ways to shave off minutes of time getting patients in the door and up to cath lab where closed arteries can be reopened. It was exciting to see what can happen when groups of people work together for one common goal and how we can actually change the outcomes for patients.  We know that time = muscle (heart muscle) for heart attack patients.  It used to be that 120 minutes from door to diagnosis to stabilization to cath lab to balloon time was good.  Then it was 90 minutes.  Now we are looking at 60 minutes.  And each incremental decrease results in less people dying from heart attacks.

I just kept thinking to myself that I know if we if we all work together and stay focused we can change the outcomes eventually for lung cancer, as well.   It will take some really hard work, a lot of dedication and determination.  I know it can be done and that is what gets me excited.  It won’t be easy–it never has been and never will be–however, it will be soooo worth it as we start to see progress being made one step at a time.

While I was there, going into a lecture dinner at night, I tripped and fell.  It was not just a mis-step.  It was a big fall all the way to the floor.  I had on heels and the carpet was orange colored. The cords for the video cameras were taped with orange tape matching the carpet and I didn’t notice them.  Apparently others before me had also tripped on the tape because when I came through the tape was pulled loose with the sticky side up which caught my heel.  I have some neuropathy from the chemo and the sensation in my feet isn’t quite right. Those who know me well, know I fall frequently.  I didn’t even realize I was falling until I was on the way down and there was no way to prevent it. 

I bruised my arm and knees but the real pain was from my left chest.  Somehow, I twisted and yanked my chest wall setting that pain in motion.  It’s the same pain I have as when I sneeze.  It truly feels as though something (like tissue!) is being ripped. It a deep burning pain and any movement makes it worse.  The pain was so intense I was immediately nauseated. Luckily, I was rooming with Marita, a good friend and nurse, and she helped me get back to the room and get the pain under control again.  After a couple of days, it was back to normal level of pain again. 

I wondered about what the people in the room thought.  On the outside, I looked normal- just another, although clumsy, person  attending the conference.  Nobody realized what I had been through, why my feet feel numb, why my chest would be so painful, why breathing was such an issue. Nobody knew about chemo, about thoracotomies,  pleurodesis,  nerve damage, or about lung cancer. 

Then I began to wonder about the other people in the room– and wondered if any of them also had cancer or maybe even lung cancer. You just never know, and you can’t tell what is going on by looking at the outside.

Needless to say,  I didn’t get much out of the dinner lecture– I couldn’t even tell you what the topic was.

I recently watched a special on network TV in which a well-known cancer survivor makes a flippant statement that “cancer is one of the best things that ever happened to me…. it has made me a better person….”.  He went on to say how much he has grown from the experience and how much cancer has been able to teach him about his own strength.

That is not the first time I’ve heard someone say something similar about how much cancer has allowed them to “grow”.  Statements like that make me cringe.  I just plain and simply do not understand it.  I’ve given this attitude much thought, wondering from what point of view could one conclude that cancer was the “best thing that could have happened.”  The only conclusion I can give it is that there are many different kinds of cancer and we are experiencing completely different kinds of diseases. 

The cancer I am experiencing is devastating.  It’s relentless and wracks havoc on those it touches. It lurks in the shadows, waiting until you feel half-way normal again and then shows itself to let you know it is still invading your body quietly and stealth-fully.

The cancer I know changes lives quickly, however, in no way could it be misunderstood to be for the better.  It extends beyond the body it resides it, extending to family and friends.  It nearly always takes lives prematurely without regard to how healthy or how old the person was before knowing cancer; or how bravely they fought or wanted to live longer. It forever leaves hurt and broken-heartedness in it’s path.  

The cancer I know has ended lives of young women, mothers of babies, fathers with your families, husbands, daughters, mentors, sisters, mothers, friends, brothers, and loved ones.  The families of all these people did not need cancer to know that they were exceptional people with incredible strength and courage. Their lives before cancer were proof enough.

I could never be someone who claims cancer has made me a better person or stronger, or in any way better.  I would have much rather realized my inner strength in other ways.  I would have much rather not caused my children and family so much grief.  I would have much rather known the friends who have already died from this disease for their accomplishments and contributions to their communities instead of from their battle with lung cancer.

All cancers are not the same.

I feel tired. Just tired. I’m tired of feeling tired. I’m tired of cancer and the aftermath of what cancer has done to my body. I’m tired of thinking about cancer.

It’s been a busy time lately. I feel like I’m running here and there, — all of it is what I want to do and need to do–however, I’m tired. I used to be able to do whatever I wanted and not notice being tired at all. Now I’m tired–that’s from cancer.

We took the trip out to Colorado during spring break and that was so much fun! It was precious time with Aly and good friends. And it was exhausting. We were gone for two weekends and there was a lot to catch up on when we returned.

The following weekend, I went with my wonderful friend, Annette, to visit her college age daughter in Birmingham. We had such a wonderful time. It was relaxing and we had lots of fun; however, as always, there was a lot to do coming home.

Then last weekend, I went to visit my family in Indiana. It had been such a very long time since I’d been there and I wanted to see everybody again. I hadn’t seen my family since Thanksgiving when they came here. It was time for a visit, even a short weekend trip.

One thing cancer has taught me is that I can’t put off visits with family and friends. It’s necessary for me and something I usually crave after any kind of treatment, especially this last one in February.

Since I’ve been off having all this fun and adventures during the weekends, I’ve crammed all my work hours during the week. My days away from work are filled with advocacy work and house work. It’s things that either have to be done like laundry or grocery shopping or things I want to do such as writing this blog or answering calls, emails (which I’m really behind on!!) or like, today, doing a TV interview. Last week it was a radio show. I usually have at least one to several teleconferences a week, as well.

Advocacy work is elective–yet, it is a passion and so very, very important in lung cancer. I am fortunate that I have been given so many years to continue to be vocal for lung cancer. I know I have limited years and I have to get done as much as possible before I can’t anymore.

And spending time with my precious daughters and being their mom. Nothing takes over that time, even tiredness. Girl time is always a priority–over any obligations or chores.

Then, there is the always ongoing issue of dealing with insurance companies. Filing claims, making phone calls, making sure everything is covered and resubmitted. It is a never-ending list of things to do between health insurance, cancer policies, life insurance, disability insurance, etc. Someone is always wanting something filled out on a new or different form and signed by patient, doctor, referring doctor or they cancel. You all know exactly what I’m talking about. That, in itself, is a full time job!!

This sounds like a lot of complaining. I don’t mean to complain. I just notice that I can’t do what I used to. I miss the stamina I used to have. I think everybody has a decrease in stamina as they age, however, with cancer it happens overnight or within a couple of months verses over the course of decades. So much has changed for me since cancer; fatigue, pain, weakness, work, worry, my future, stamina, focus, priorities, even sleep. It’s difficult to keep your mind and body in sync. Your body and ability fail much quicker than your mind and spirit. They are not in pace with each other anymore.

I remember walking down the hall at Vanderbilt with one of my favorite physicians and researchers, talking and breathless and he casually said “you need to get used to your ‘new normal’ and set a new pace for yourself”. It caused tears to well up until they spilled down my face right there in the hall. Truthfully, I hate my ‘new normal’. I wasn’t ready to give up my ‘old normal’. I miss my breath and ease of everyday life.

That’s cancer. That’s lung cancer