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.

  

July 21 - Joshua's visit

 

I was anxious to see my grandson Joshua again before he leaves on July 31, for a year in Brazil.  There is always the worry that I may not be here when he gets back. 

Josh graduated this past May from the Univ. of  Delaware with a degree in chemical engineering.  But he is not sure he wants to devote his life to engineering, having discovered he is more of a people person.  This year will give him a chance to try his hand at teaching.  A year  of  total emersion in a foreign country is a good experience for any young person and Josh has gone about it  in a very organized way.  He has started a blog ( dizzleinbrizzle.blogspot.com )  where he describes his preparations and promises to keep us in touch with updates.

Josh and I also spent some time looking at my family trees and history project.  I have a deep-seated hope that at least one of my grandchildren will catch the “spark” and carry it on, and Josh may be the one.

He brought his mother with him, to share the driving across state.  They also had time together in the car, 6 hours each way..

I am always happy to see my daughter-in-law Gail.   They have lived too far away for her to become the daughter I never had, but she has been a good mother to my grandchildren, and supportive wife to my son, and I love her for that. 

6 years ago, Gail’s mother died of lung cancer which lodged in the brain,, and Gail spent the last 2 months with her.  She knows, better than I, what I have to expect down the road, and I know she’ll be here for me.  She and I also talked about how she and the family can help Larry, when the time comes.  These are difficult conversations, but are better confronted now than ignored.

She also showed me a “Grandmother’s” book that she and her mother made to be left to the grandchildren.  In it, “Grammie” recounts her first interactions with each grandchild and the special memories she has for each one.  Included is the family tree of Grammie’s side of the family, and family recipes and pictures.  These notebooks will become family treasures, and keep her memory fresh in the hearts of her grandchildren.

I plan to do something similar – I had always planned to leave a copy of my family history (which can be seen at www.pittsburghdiary.com/) for each of the grandchildren, and now I will add my own memories of vacations spent with the children and let them know how special they are to me.

Ethical Wills

An ethical will is an opportunity for the older generation to pass on their values to their descendants through a document that would be a part of their final papers.  As Unitarians, we are all expected to create our own credo over the years, as we study and learn and grow.  I have worked on mine for over 30 years.  It would be entirely appropriate for me to include my ethical will in my “grandmother’s book”.

 

The best example of an ethical will comes from Shakespeare, from Hamlet, Act I Scene III.  Polonius is bidding his son goodbye as Laertes leaves for a year in France.  He offers some advice, including:

            “Those friends thou hast, and their adoption tried,

            Grapple them to your heart with hoops of steel”

What wonderful words!  “Their adoption tried” and “Grapple them to your heart with hoops of steel” Don’t ever be too busy for these friends!  Show them you love them!

And his final words to Laertes have been a beacon to me all my life:

“This above all, to thine own self be true

and it must follow as the night the day,

thou canst not then be false to any man.”                                                                                                                                                                                                                                                

July 20, 2009 -- a respite from treatment

I woke up this morning feeling really good, strong, happy.  A brand new day ahead of me, thinking about the many things I need to do for my grandson’s visit.

I realized it has been a year this week since I was first diagnosed with lung cancer.  At that time I thought that a diagnosis of cancer meant a sentence of death, and a horrible, painful death at that.  I did not think that July 2009 would find me alive and feeling well. 

I wish someone had told me, “you can live with cancer, and live a full and satisfying life as well.”   

I try to keep connected to life, and do at least one thing a day that I would have done before the cancer – get out of the house, to the store, visit a friend, go somewhere interesting.   I can still cook and shop.  I can go to informal concerts and discussion groups (salons) with my friends.   Sorry to say, the energy only lasts until after lunch, when I retreat to the couch and a nice long nap.

My lagging strength and energy has forced me to give up the active parts of my life – swimming, biking.  And while that was important at one time, I can set it all aside and still be satisfied with my life. 

I have my friends and my family, and they are the most important part of my life.  And cancer has given me the time to let them know that, and put all my things in order.

 =========================================================

A recap of this last year, living with cancer:

I was diagnosed at the end of July, 2008.

August was taken up with scans and tests,  a PT scan of chest, CT scan of abdomen, and an MRI.  A bone scan.  A biopsy of the tumor, guided by CT scan.  Media stenoscopy.  Implantation of port for chemotherapy.

Started my first round of chemo on Sept. 8.  This consisted of 5 doses (etopodide and cisplaten), rest for 3 weeks, then 5 more doses.  Meanwhile radiation of the tumor began, 1 session per weekday for 36 days.

During both the chemo and the radiation I did not feel any pain nor nausea.  At all.  It was an easy cancer.

The radition left me very tired, and I scaled my activities back to half a day.  I could go shopping, have lunch with my friends.  When my hair fell out, my friends threw me a babushka party.  I bought several wigs but found I seldom wore them.

 

A scan in Feb. implied that the cancer had been destroyed and I was declared in remission.  But my oncologist was worried about my cough and sent me to a lung doctor.  After several tests, he declared I had a serious case of emphysema.

From cured to invalid in the space of one week! I was outfitted with a breathing regime (albuterol) and several puffers.  My days became tied to the breathing schedule.  I was depressed.

And so it has gone through the spring - cancer on hold, emphysema to the forefront.  

 

 

 

 

 

July 15, 2009

A Day to be Endured!

The day of my stereotactic radiosurgery (gamma knife) at Allegheny General Hospital, to remove a small tumor  from deep inside my brain. 

We arrived at AGH at 5:30 am and wandered empty hallways, looking for the elevator that would take us to the 11^th floor – to the ambulatory care center.  We finally encountered a human being who led us to the correct elevator.   In contrast to the empty hallways below, the waiting room there was jam packed! We waited. Coffee for Larry, shut-eye for me.  Individually we were called to the registration desk, and from there sent down to a ready room to await the next step.

I changed into a hospital gown and waited on my gurney until they were ready for me on the radiation floor.  At that point Larry left for home, to pick up some forgotten items.  Costly, he used his validated parking ticket and had to pay full price upon return.

I was first given an MRI and then taken to a room where the frame was fitted.  They had warned that the worst pain of the day would be from screwing the frame into my skull.  Owwie! They were right!  But the pain subsided after the frame was in place and set.  The frame was uncomfortable, being heavy enough to impede head movement, and I could not put on my glasses behind it.  Nor could I eat or drink.

After the frame was set in place, it was back to my room to wait until the computer that controls the gamma ray machine was programmed.  This took several hours. Larry was there, and had brought a book to read, and I listened to an audio book by Amy Tan – “the Bonesetters Daughter”. 

Finally, at long last, they were ready for me.  Back down to the 4^th floor.  I was wheeled into the room with the gamma ray machine, and my frame was bolted into the bed that is wheeled into it’s hole. There was no movement of my head whatsoever.  I was in place about 20 minutes as the gamma machine moved around me, shooting its rays into my skull.  I was fully awake and aware the entire time.

When we were done, I was wheeled into another small room where the frame was removed.  Owwie!  For the second time today, I was feeling pain.  It was short lived.  I was released from that frame and sent back upstairs to recuperate.

A hot meatloaf dinner was waiting for me.  Without the frame, I could get a fork to my mouth. Larry, who had in the meanwhile gone down to the cafeteria for his meal, shared my dessert. 

By 5, we were released to go home.   It had been a long day, and I was tired.

And by the next morning, I felt fine.  Back to my old self again.