Sunday, November 30, 2014

November 30- The Last Day of Lung Cancer Awareness Month

I love Sundays- I do whatever I want to do and that is a wonderful thing.   I normally get ready for the week ahead- so I make a plan.

This week on Monday, I will be participating in a lung cancer survey- I do one or two of these a month because they are helpful and I also get paid ;-)

Then, on Tuesday I will go for treatment.   I am participating in a clinical trial for immunotherapy here in town- some say it is a rising star treatment for those who have lung cancer- those like me.

When I was told the cancer had progressed in August of this year, I was asked to come to Indianapolis.  First, I underwent a procedure to find out if I was eligible for any of the targeted therapies that are available now.  It seems that the only one I was eligible for would not work with my scary heart condition.

These were my options.

1)  Go through the same chemo I had gone through before- my oncologist said I would go into remission, after all it worked before- but the remission would not last as long.

2)  I could try a different chemo- that was considered.

or

3)  I could become involved in a clinical trial that is very promising.  


I chose the last one and have had two treatments so far.   The side effects are few compared to chemo.
I will have a CT Scan after the fourth treatment to see what is going on-



Recently I read an article by a person who had quit smoking - she was quite thrilled that she had quit for 30 days.   I had to rain on her parade and remind her that ANYONE can get lung cancer.   Quitting does not make it you free and clear from the threat of contracting lung cancer.    My oncologist has told me the best thing I ever did for myself was quit smoking twenty years ago.    Everyone has an opinion.

Here is mine.  If you think you are exhibiting any of the signs of lung cancer find a doctor to get you a CT scan- early detection is key.  





Saturday, November 29, 2014

Excerpt from 'Fighting Cancer" Nine Months After Lung Cancer Diagnosis-no BABY!

I wrote Fighting Cancer during the first year after my diagnosis of lung cancer.  It was a blog that turned into a book.  I think it will help those who are in the midst of it all, and their caregivers and loved ones!

Check out the following excerpt from Fighting Cancer!






Nine months ago on November 6, 2012 I was on my way to the ER with a heart rate pounding at what I later found out was 260 beats per minute. This was followed by a quick reset of my heart (for anyone who has never had an SVU episode- the ER people stop your heart and obviously get it going again!) The ER doctor recommended a chest X-ray.


No one was straight with me. No one there told me anything except that I would be going home that day after a ‘few more tests” No one told me they were going to admit me. In fact, all I was told was that I was going to be released soon. Imagine my shock when five hours later I was told I was going to be admitted for a CT scan that would take place in the morning because their scanner was broken –. I talked to several doctors that day and the pulmonologist voiced his concern that it might be cancer. All of this time there was a lot of looking away by nurses and other personnel when I asked direct questions. I had had nothing to eat this whole time and until the whole ordeal was over the next day at 2pm I would get nothing to eat. The hospital would keep me on a saline drip until that time. I found out later that keeping a patient on a saline drip insures that payment will take place. The rest of the day and night I was up and down going to the bathroom. My daughter stayed with me, even though I asked her to go home and my son came up to see me-but I told him to take care of Betty (my black lab).

I had gotten the information late in the day that I would be getting the CT scan at 8am the next morning so I decided to tough it out, since it didn’t appear that I had much choice anyway. We got through the night and soon 8am turned into noon with no testing and no visit my by any doctor. By now, it was November 7, 2013 ELECTION DAY! I had put off early voting because I certainly had not planned on this happening. I was getting beyond furious. I had had nothing to eat in over 36 hours, I had been lied to repeatedly, I was given no answers, and the nurses were acting like I was a pain in the A. This was just fine with me. They were about to find out what a pain I could be.

Around 1 or so my daughter finally said she was going to go home for a bit, shower and change and then come back. I knew this was my chance for a break-out!


As soon as I knew she had cleared the hospital- I called out for the nurse who had been patronizing me- and telling me I would soon get my test- and to just hang on-blah blah. It was not her who had not eaten in 36 hours or had been getting the bums rush for that long. Then an older supervising nurse came in and tried to get very bossy and tell me to calm down. That was it! I told her in no uncertain terms to get the doctor who had admitted me – NOW!!!! In about 20 minutes the doctor came in and I told her I wanted released and that we could set up further testing on an outpatient basis. She asked why I was so mad. I told her I had not eaten-etc. And, that I wanted to vote!!!

She told the nurses that I would be released and they set up my lung biopsy for the next day - on an outpatient basis! Anyone who has been reading this blog knows what happened after all of that. I went through a lot trying to find the right treatment center- trying to find the right treatment, trying to stay sane. And, even today I do not know if I have accomplished any of these. I do know I am in remission. I do know that I have gone through many rounds of chemo and am now on maintenance Avastin which is affecting my blood pressure. I do know that I now have neuropathy. My oncologist has told me this may never go away and could be a lasting side effect of one of the chemo drugs, Taxol. My hair is beginning to grow back in- it is mostly silver gray-not too bad. I have gained weight from the steroids they gave me to counter the side effects of the chemo. I cannot say that I have more good days than bad days because on the whole I am just living my life as I always have. What I have learned in these 9 months is this. Lung cancer patients do not receive much support from the organizations structured around town. I am in a horrible place financially, which was not the case when this began and I get pissed off on a regular basis. On the bright side (LOL) I am mobile, can still walk Betty if I want to, and my family and I put in a raised bed garden this year. Those were all of the things I wanted to do or planned to do when I bought this house just about this time last year. I turned 60 this year on April 27, 2013 and that was a happy day. I am happy that I am here-and experiencing all of this and I am trying to motivate myself to look outside rather than inside myself. Inside can be a very dark place once the diagnosis of lung cancer is revealed. A couple of weeks ago, my 82 year old mother went to the dentist and was told she would need to have ten teeth extracted and this would be followed by getting dentures. She told one of my sisters she hoped she would not regret getting her teeth pulled. I hope she doesn’t too.



One of the side effects of Avastin that I have experienced is teeth problems- hopefully I will not have to have ten teeth pulled anytime soon!








Friday, November 28, 2014

Cursing Cancer -An Excerpt from 'Fighting Cancer'

 

Two months or so ago I received a message from the IPFW Students and Alumni LinkedIn Group telling me that they had gotten many criticisms concerning my use of cursing in my blog posts and to not send them anymore. Frankly, it was the best laugh I had all day. Here is a group that supposedly represents a school of higher learning where those attending are being taught to think for themselves, but some of the readers of a blog about a person who is fighting her own personal battle with lung cancer that contains curse words is offensive. At the time I received this message I think I had just gone through my first chemo treatment and I can assure you that every one of those curse words were appropriate. I have not sent any posts to this sterling group since but have dedicated several posts and photos to them. Yes, I did say I had not sent any posts to them since them- until now.




Wednesday, November 26, 2014

The First Year ' Fighting Cancer'

I was diagnosed in November of 2012.  That has been over two years ago.  The first year was a wild ride.  Finding the right health care team, going through treatments, traveling to Indy and back multiple times, fighting side effects, and then remission.   During this time I kept a daily blog.  I had too, I had insomnia and there wasn't much else to do at 3'o clock in the morning!

At the end of 2013, I took the blog and turned it into an eBook.  I thought it might help other people who were fighting lung cancer.

Take a look at it- it's available on Amazon!


Fighting Cancer by April Brewster Smythe



Saturday, November 22, 2014

Immunotherapy Anyone?



Immunotherapy- is anyone involved in any of the clinical trials now taking place. Would like some input on your experiences- here is mine so far-After being diagnosed 11/12/2012 and then undergoing a round of carbo/ taxol/ avastin- - then maintenance avastin for about 8 months ( I began to go into remission after my second blast of chemo) I was off of everything until a slow progression was found in August of 2014. I was given options - and I decided to participate in a clinical trial here in my hometown for nivolumab. I underwent a bronchocopsy in early September to mine more tissue for targeted therapies and was told I was not a match for any of the current drugs out there. My opinion, for what it is worth (?) - I think it is all a XXX shoot and I am just happy to still be here. On the whole I feel good, side effects are slight compared to chemo.  Chemo left me with neuropathy – so I now have balance challenges.  



Tuesday, November 18, 2014

Woman Keeps Singing After Lung Cancer

I found this very cool article while browsing through articles about those who enjoy music and how it has helped them with the challenges of lung cancer.

I love to sing- but my voice is rusty and my breathing is just not as good as it once was.   Reading this story, Woman Keeps Singing After Lung Cancer was an inspiration to me.

So often those of us with lung cancer get bogged down with sad statistics and brutal therapy- I find it refreshing to hear music- and yes, still belt out a tune or two.

Lucky for me, I have Sirius Tunes on my Dish TV- the 50's, 60's, 70's, 80's and 90's are all there in front of me.  A little dancing keeps me moving too.



For me, it's an upper to sing along with those great old tunes.