I must speak out!

After listening to these rude and mis-informed people shouting at our Senator Spector, I must speak out!

 

As a cancer patient, with metastatic lung cancer, I am walking the walk, talking the talk.

Every time I go into the hospital, I am asked, “Do you have a living will?”  and “Is it on file at this hospital?”

 

Yes and yes.   I have had one for years, in which I clearly outline the point beyond which I will have no extraordinary measures taken.  My oncologist understands and agrees with me.

 

I have also talked with a person at our local hospice, and understand what services they will be able to offer.  I am comfortable with what I hear.  And, it is all covered by Medicare.

 

I am back on chemo.  I have a treatment of chemo (carboplatin and Alimta) dripped in through my port.  I also get an anti-nausea drug and vitimin B-12 at that time.  I have 2 weeks of rest before it is time for the next treatment.  I know how much some of these chemicals cost, thanks to several articles in the NY Times discussing the high cost of cancer drugs.   Alimta, they tell me, is $4,000 per dose.  Carboplatin is over $1,000 per dose.  Neulasta is over $3,000.  The drug companies accept lower payments from Medicare, and my co-pay is around $12. 

These drugs are very expensive, and they seem to work.  I have so few side effects.  After my September treatment we will go into a longer rest period and order another scan. 

 

I am feeling well, although my energy is very low.  I can’t just “get up and go” the way I used to.  There are a number of projects I need to complete (ethical will, memoirs) and these expensive chemicals are buying me the time to do it in.  

Aug. 9 - Sunday morning

Those who saw me at church last Sunday will already know what this post is all about!

 

I have, until now, been very dependant on my husband for getting me to and from places I need to go, and he has always complied with grace and good will.  Except on summer Sunday mornings, when he prefers to attend the lawn concerts at Mellon Park.  And I do, too,  and that is where you will usually find us.  Except last Sunday, when he had a radio club activity.

 

And, in thinking about it, I decided that Sunday morning was a good time to put my foot to the metal and try driving again!

 

The breathing therapies and medications I have been receiving over the months are working.  I can go without oxygen for large portions of the day.  The coughing has greatly decreased.  These were things that kept me isolated.  No more!

 

The only problem was that I was having a bad hair day!!!  Thought I would never see one of them again.

 

I’m so glad I went.  I saw so many fond faces.  The program was excellent.  The current events discussion lively.   And mingling among my many friends, I felt connected, I felt alive!

 

These friends of mine

Those friends thou hast, and their adoption tried, grapple them to your heart with hoops of steel –

 

The question is, how can I keep the connections alive when I am unable  to do the reaching out?  I seldom drive any more, and then it is very limited distances.  My husband is my chauffeur, especially at night.  So the thing is, yes, this cancer has limited me.  One way or another, my friends must come to me.

 

I remember how I used to feel about cancer patients, even when they had been close friends of mine – I was afraid of them!  “How can I be with a person I know is going to die?”  Denial and avoidance!  How wrongheaded I was.  I deprived both myself and my friend of some rich moments together. 

 

I have had cancer for a year now, and I do not feel about to die!  Let’s focus on the things I still can do --  I can go out to lunch, or to a lawn concert or museum.  I have a wheel chair for trips out.  I am happy to have visitors to my house (especially if they bring lunch), to sit on my wonderful porch and talk.  When I tire, I say so.

 

One of my Monroeville friends, a woman I worked with at WPSD, uses the distance between us as an excuse to use visits to me as an outing for her 90+ yr old mother.  I have known her mother for many years, and feel very comfortable to have her included.

 

Two friends opened their house for a pot-luck party, for those who had not seen me in many months.  Now they could see me with hair!  It was a wonderful party, but eventually I tired. 

 

And let’s not ignore the internet.  Several friends are expert at gathering interesting, cute pictures that they forward to me.  Uplifting.  And I know they are thinking of me.  (my email address, by the way, is:   tcomden@mindspring.com

 

So this blog is an invitation to my friends to come – call before you come – we both are happy to see you.  I will start treatment next week, one week of treatment, two off.  This will go on well into the fall.  Off weeks are better. 

 

 

July 26 - Back in the hospital

Drats!  DAMN!  Dagnabitt!

I am back in the hospital again. 

I really didn’t want this to happen.  

The canula of my night time oxygen system was irritating my nose, making it red, swollen and painful.  I noticed this on Friday.

I treated it with an antiseptic cream, but Saturday it was still there and had spread to the sinuses under my eyes.

I had a party to go to on Sat. night and decided to ignore the redness and puffiness until Sunday morning.

I went to a MedFirst place Sunday morning, saying, “I don’t know if this is serious or not” and they said, “Yes, serious” and “Promise me you’ll go directly to Jefferson.”

And Jefferson said, “Yes serious” and admitted me.

For the next 4 days I was trapped on the 4th floor, tethered on one side by an antibiotic drip and on the other  by an oxygen tube.  Watched a lot of TV and couldn't wait to go home. Released on Wed. afternoon, and everything including the cats, is back to normal.

Chemo resumes in another week.