So initially, immediately after my scans the oncologist looked at the pictures and we thought they looked pretty stable. The feeling was good– great, a relief; my breathing returned to normal. He recommended that we could wait a full year before we looked again. That feeling was estatic. I’ve not been able to make plans for a year in nearly 9 years. It’s always been in short 3-5 month intervals. I spent a few days just trying to get my mind around it- everything was stable, I wouldn’t have scans again until 2011!
A week later, just about the time I had accepted that we could go a full year without looking again, I had a phone call from the oncologist. His voice was slow and deliberate, sincere. I knew the tone. Somehow I felt sorry for him-his job must be so difficult. A week earlier he had shared my joy at the thought that everything was stable and now he had to break the new that the cancer was actually growing. I knew this phone call was difficult for him, too. With as much reassurance as he could, he told me that the radiologist had read the scans with growth, and that as he reviewed them, he agreed. He recommended I start thinking of a new treatment in the near future. He reassured me that it was slow growing, minimal growth and we had plenty of time to make a wise decision.
Even though it is small growth, it is such a disappointment. I had thought we had a year-and then we didn’t. I had somehow let myself think that maybe it was truly gone. That somehow it wouldn’t come back– that the cancer had faded away and life might go on as normal. I had let myself think that maybe we had beat this for good. Deep down, I guess, I knew better. Its lung cancer. Unrelenting lung cancer.
So, I’ve known now for several days and its time to get over the disappointment and start thinking about what to do next. At this point, treatment decisions are sometimes a matter of elimination. I don’t want chemo- it’s too slow growing. I don’t want surgery again- I’m already missing too much lung tissue. I’m worried about doing anything that would diminish anymore lung function. Carbone said he wasn’t in favor of the RFA again, but I’m not sure why. I thought it was a pretty good treatment choice. He said he wanted me to think about stereotactic radiation, however, I’m scared, terrified, of radiation to my lungs. I am not worried about the treatment itself- but the long term effects to the lungs.
So, I have lots to think about. I have lots to figure out. Next week, I’ll talk to Dr. Carbone again. It’s time to make a plan.
It’s been a rough day. Rough week, actually. Really, rough two weeks.
It all started when I developed an upper respiratory illness—unrelenting cough, congested, body aches, and fever that has hung on through lots of rest, orange juice and two rounds of antibiotics. Even when I can rationalize that I have a cough because I have an infection, somewhere in the deep wrinkles of my brain something whispers, “or maybe it’s cancer growing in your lungs”.
And tomorrow is scan day. It’s been scheduled for 5 months. It’s routine. I have them often. I’ve always had CT scans frequently since 2001 when I first learned I had lung cancer. So this is routine. Its what I do.
Still, I never quite get used to it. Sometimes are better than others. This one has been hard and I can feel the overwhelming anxiety overtaking me. Yesterday, seemed worse than today has been. Yesterday, I was even tearful for short intervals without due cause. Today is not that bad, yet I am still not myself.
Surely, there are better ways to handle this. I am the first to admit that I don’t do scans very well. And I can understand why this one is especially hard– it’s still wintery out- no sunshine, I haven’t felt well lately, I have a cough and fatigue too easily, and I already know there is something there and we are just waiting for it to grow.
So until tomorrow, I’ll be anxious, I’ll be uptight, I might be tearful, I’ll be sick and tired of hearing and talking about cancer; and I’ll have to take an ambien to sleep.
At the Targeted Therapies Meeting, the one thing that I heard over and over was about different mutations that tumors possess and how they are working on blocking these mutations to stop tumor growth.
So, lets back up. How do we know which mutation our own tumors possess? It is not done routinely and is not part of what the pathologists looks at when examining the cells to make a diagnosis of adenocarcinoma or squamous cell lung cancer. It is not the same test as gene amplification–that just tell us if the gene has reproduced excessively; however it doesn’t tell us if it has actually mutated. The actually gene mutation test is specific, and takes up to two weeks to perform. It doesn’t take a lot of tissue– and can be done on paraffin block tumors. The gene mutation testing needs to be done at a certified lab specific for gene mutation testing.
They are finding out different things about different tumors. For example, the EGF mutations have a part that is actually deleted. exxon 19 and exxon 21. ALK gene fuses with another gene.
What does all this mean for patients? One thing that I heard over and over was that the gene mutation testing does not eliminate treatment, but it help prioritize treatments. For example: Many people who are EGF gene mutation negative still may have benefit from taking Tarceva. However if a patient’s tumor has the exxon 19 deletion that patient most likely will respond to Tarceva. There is still alot we don’t know, but we can use the knowledge we have to help guide us to know what therapies might work best for us.
So who should have their tumors tested?? EVERYBODY WHO HAS LUNG CANCER. This is something all the doctors were saying- we have enough information now that we can design treatment based on gene biology of the cancer.
I just returned from Santa Monica. California. I attended the IASLC 10th Annual Targeted Therapies in the Study of Lung Cancer. At this meeting, leading researchers and oncologists talk about new and upcoming therapies for lung cancer.
The advances made in the last decade leading to even newer possible targets and treatments are truly exciting. I remember when this meeting was much briefer, and most the talk was focused only on EGFr. Now its multiple genetic mutations and things like ALK fusions, and irreversible TKIs, and vaccines used to treat lung cancer. For a patient forced with facing a personal battle with lung cancer, these new treatment options offer hope. Hope not reflected with current statistics on lung cancer.
However, the best part of this meeting was what LCFA was able to accomplish. Our first Career Development grant, in conjunction with IASLC, has closed the application process and the grants are now in the review process! I’ve had the privilege of reading through all the grants and WOW, I’m encouraged by the number of good, exciting researchers that have applied. Grants came in from around the world– and while I’m not qualified to evaluate the science of the grants–I can tell you, I am excited just thinking about the work happening!! My only regret is not being able to fund all the young researchers.
Another exciting part of what LCFA was able to do, was put together a New Advocate’s Training Day! We brought in about 15 new advocates who have expressed interest in learning more about lung cancer research and helping with LCFA’s activities and mission. And I was equally impressed with the high caliber of the advocates that came to join us! They were educated, eager and full of great ideas for LCFA! Four top scientists in the country came to our Training Day presenting highlights of their work and the latest news regarding lung cancer research.
I came away with inspiration and a strong desire to do more. To have another Advocates Training Day and do more to raise even more funds so that we can fund more research. Any time I have the opportunity to see and work face to face with Kim and David (Co-Founder’s) is always a great, recharging time; however this time was exceptionally special because of the upcoming grants and the ability to work with new advocates.
November is official here, and with it comes the beginning of Lung Cancer Awareness Month. Before I was diagnosed, I didn’t know when it was. I didn’t even know there was a lung cancer awareness month. And once I found out when it was, I wasn’t sure what it meant–there weren’t any events, no ribbons on merchandise, no billboards with announcements to ‘help find a cure’. It was only quiet. We wore clear, unnoticeable ribbons- as if it were a secret to the rest of the world.
That was eight years ago. Some things have changed. I think overall there is more talk about lung cancer. Peter Jennings and Dana Reeves helped break the ice. There are some walks and there are some events, although isolated, throughout the country. I no longer wear a clear ribbon; I refuse to be invisible. But I am encouraged, because eight years ago there was virtually nothing at all.
However, we still have a long way to go. Such a long way. Funding hasn’t changed. Well, not to the positive. It has declinedover the last eight years. We used to get about $1,800 per lung cancer death–now we only get $1,530. Not the kind of change we were hoping for. Still there have been some breakthroughs. Iressa and Tarceva hit the market. We understand lung cancer better now and we have gene mutation testings which help in treatment selection. All these things have come to pass in the last eight years.
However, lung cancer remains the biggest cancer killer. Over 160,000 will die from lung cancer this year…. the same as eight years ago. When I stop to think about how many people have died just since my diagnoses eight years ago it’s astounding!! How can such a disease that effects so many continued to be ignored?
So what can we do to change things for lung cancer?
We can all unite and vow to do something verses stand on the side lines. Help spread the word and stop the ‘blame the victim’ game. It’s cancer and all cancer patients deserve adequate treatment. Hold a fundraiser, organize a walk, talk to members of Congress, ask local businesses to help raise awareness. If everybody who just knows somebody with lung cancer would donate just $10 to $20 we would have enough money to award grants that would be able to develop new treatments and find new ways to discover the disease in it’s earliest, curable stages.
This is a huge health care issue. However, I know it is not insurmountable. We have tackled worse enemies and won. We have done it before with breast cancer, heart disease, stroke, and even HIV. We can do it for lung cancer; We can do it for the millions who have lost their lives to this terrible disease. We can do it for the ones we love.
We can, and will, win the battle with lung cancer.
Last month, my friend Anne and I went to Chicago to the Chicago Lung Run. This was the 6th annual Run, however, my first time to go to this event.
They had over 1600 people attend the event and the proceed went to local Chicago area researchers. We were quite impressed with the momentum and turn out. It was a beautiful late summer day, with a clear blue sky and coolness in the air.
One of the LCFA Founders David Sturges actually did the run. I stood on the side lines and cheered the participates. I was quite proud of David running–as he is a lung cancer survivor himself and has had two lobes removed. I was thinking silently that I couldn’t have attempted to run even one block, much less miles. They gave him a special t-shirt with bold letters ‘Survivor’ on the back.
Just attending the event was empowering. Besides being there with a Lung Cancer Foundation of America booth, it was awesome to attend an event to raise money for lung cancer research. I admit, I am jealous of all the awareness and fund raising activities for breast cancer. Purely jealous. Lung cancer needs this so much, and there are so few activities for lung cancer research. So, attending this event was empowering.
Without my pain meds, I’m back to sleepless nights. The pain is back full force and if I can get to sleep I don’t ususally stay asleep. Turning over in bed is enough to wake me up or I wake up with burning chest pain where the mattress touches me. Laying down flat seems worse that sitting up. I just don’t sleep that well sitting up.
Tonight, however its more stomach issues- I think. I ate dinner and maybe should have passed. Its been 7 hours and still feel full. That pushes up to my chest and makes the burning worse.
I have lots planned for tomorrow… and the frustration of not sleeping is bothering me. Nothing worthwhile is on TV in the middle of the night–I’ve already watched CNN until it has repeated itself. I used to enjoy the middle of the night– when I had time to myself. That was before cancer. Now I hate it… just much too still, much to quiet, and much too dark.
I just simply think they should play the really GOOD movies during the night for all of us who just can’t make it through the night.
The vomiting is more under control. I haven’t vomited in several days, although I still feel like my abdomen is bloated. Compazine seems to work on the nausea. The pain is much worse without my pain meds, however and there is never a time I’m not in pain. It’s just varying degrees of pain.
On Wednesday I had a gastric emptying study; which shows that my stomach doesn’t empty well. They think this might be an effect of the chemotherapy drugs I’ve taken in the past. I’m not so sure. I don’t know why I’m having such issues now.
On Friday, I went to an Intervential Pain Specialist who said while they maybe able to help maintain my pain to a degree they most likely will not be able to get rid of it at this point. That was disheartening. I really want the pain gone without medication and the medication side effects. Some days are better than others. Some days it feels like I have the flu– with increased pain and extreme nausea vomiting. Other days, I feel pretty good. Its hard to make plans because I never know how I’ll feel.
So far, I’ve been able to maintain at work and continue to go in on my scheduled days. It take quite a bit of planning– I plan nothing on the day before I’m scheduled to work so that I will have enough rest to get through the next day. Somehow, the inability to work everyday feels embarrassing to me. Like a weakness or something.
I keep praying for more good days than bad days. Right now they seem pretty equal and I’d really like to tip the scale to more good days than bad ones.
So, I thought I had figured out what was causing me to suddenly vomit. I thought it was my meds, right??
Maybe not…. as I found out last week.
I met a good friend in Nashville the other day for dinner. It was a great day and I was looking forward to see my friend. I hadn’t seen her is a very long time and we had much to catch up on. We met at a favorite resturant and talked for 3 hours before ordering our food. The time flew by as we chatted about everything going on in our lives.
Shortly after our dinner arrived, I suddenly had that bad feeling that something was not right in my stomach… that slightly nauseated feeling was back. I sat my fork down and while Debra was in mid-sentence I knew I had to leave the table quickly. As soon as my feet hit the floor, I started vomiting into my hands with terrific force. I wasn’t even close to the bathroom! I franticly made my way to the bathroom, trying to disappear from public view. As I opened the bathroom door, my heart stopped when I saw it was standing room only! Without hesitation, I wiggled my way to the trash can as I continued to vomit…. only, there was another problem. The trash container was built into the way of this nice restaurant and only had about an eight inch opening… not even enough to put my head into if I turned it sideways (which I tried), therefore, I had to bend over and use my hands to funnel the vomit into the trash as the episode continued non-stop.
That is all pretty bad, except it gets much worse. As I’m bent over vomiting non-stop, I suddenly realize with the force of vomiting, I’m now close to diarrhea. Still the stalls are full and the room is crowded. With the next wave of vomiting I HAD uncontrollable diarrhea… then the stall next to me opens and I rush in, still vomiting.
It still gets worse.
I manage to unbuckle my jeans, and prepare to sit down, then I start to vomit again. There is more diarrhea and as I try to vomit in-between my thighs I miss and it goes inside my jeans!!!
The entire episode lasted maybe 15 to 20 minutes and it was the most horrifically humiliating experience I have ever had. After it stopped, I still had to clean myself up enough to get out of the bathroom, out of the restaurant, out to the parking lot and to my car. My friend came into the bathroom and started passing me wet paper towels which I used to clean myself and my clothes the best I could. What I didn’t absolute have to have to cover my body I threw away in the trash.
As I came out of the stall I noticed I was the only person left in the bathroom. I had single-handedly cleared a fully packed bathroom of women within minutes. The thought made me smile.
It took me another 30 minutes or so to regain and regroup enough for the hour drive home in wet clothes. Except it still gets worse. Once I made to the car, I thought I could make it home without any more incident. As I was remembering just how embarrassing this event had been, I noticed I was nearly out of gas!! I had to stop and pump gas with these nasty, wet, stinky clothes on. I carefully picked a station without other cars there, except I was so upset by what had happened I entered my PIN number wrong three time and locked my card for 24 hours!!!! To get my gas I would have to go inside and pay!!!
It was the most humiliating day of my life. And now I also know my sudden onset of vomiting is not related to my medications. Everything I went through last week was unneccessary.
I’ve already made my appointment with my pcp to help me figure what is causing this sudden vomiting. I’m now scared to go anywhere in public again. There is just no warning.
Today was my first day back at work. It actually felt good to get back to the routine of work. The pain is harder to deal with, however, and today was. as expected, difficult in that regard. I go back to see the doctor on Monday and we’ll discuss what, if anything, can or should be done. After my last couple of weeks I’m not much in the mood to try or do anything at this point.
Maybe I can manage like I’m doing if I plan and am mindful of what and when the pain is at the worst. Mornings are most difficult, and I guess there is no way around that. But hey, there are worse than pain, right?? At any rate, I have to concentrate on positive things and as far as lung cancer goes, I have been a success story. I feel guilty complaining about pain when most everybody else has a more difficult time or dies. I feel I should just keep quiet. I frequently think about all the other people I have met that have had a much harder and difficult time than I have and I know I shouldn’t complain about pain. I’ve been fortunate– and without the surgeries I would have had a different outcome.
I’m worn out after a day’s shift at the hospital and although it’s only 6:30 at night, I’m thinking about slipping into PJs as soon as possible. Or at least, taking off the bra. The straps hit at just the WRONG place, searing a band of hot coals in the left chest area that keeps my thoughts centered on how much it hurts there. I wonder if they would be willing to just remove all the nerves to that area and be done with it.
So, for today, I’m finished. I’ll rest, relax and go to bed early– tomorrow is another day of work at the hospital.
