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.

July 10, 2009

Things are moving fast! We spent Friday morning meeting with the two specialists who will oversee my upcoming procedure. Most of the morning was spent waiting, and filling out forms (I am surprised that Allegheny General does not have a networked computer system, so that questions answered in one department are also answered for the other and do not have to be repeated)  That said, it gives us something to do while waiting ---

The procedure, which is scheduled for Wed. July 15, will kill the tumor by focused radiation.  The neurosurgeon, Dr. Aziz, will work with the radiation oncologist, Dr. Fuhrer, to aim the precisely at the tumor and avoid damaging any living tissue.

Dr. Aziz showed us, on a model of the brain, exactly where the tumor lies – very deep in the brain, embedded in white matter in the posterior left ventricle.  So deep and so small, it is not operable by ordinary methods.  The focused radiation is a common procedure, and the hospital has a lot of experience doing it.  The failure rate (that is, not a complete kill of the tumor) is about 3%.  This is very reassuring.

The side effects could be headache, caused by swelling of tissue, and (I’ve forgotten what it is called) the very rare problem of reabsorption of the dead tumor. 

Prior to the procedure, but on the same morning, I will be fitted with a frame that is screwed into the skull.  This will be done under local anesthetic.  Everyone assured me that it will be extremely uncomfortable, if not painful. 

From there my frame and I will have a limited MRI which will help my doctors aim the radiation beam.  That planning session will take several hours while frame and I relax! in a recovery area.

Then on to the radiation room, where the procedure will take place.  The frame will be screwed into the table so that there is no chance of movement.  I worry about my coughing at this point.

When the procedure is done, my frame and I are still not finished. We will be wheeled back for a post procedure scan, to determine the success of the operation.  And only then will frame and I part company. 

Time in the recovery room, where they promise me a meal of hospital food (is that a reward, or what?)  Eventually I will be discharged and Larry will take me home.

Poor Larry!  The hospital insists he hang around, with nothing to do but worry about me.   In the past, when Larry was in that hospital, I would sneak out to the Warhol or the Mattress factory.  Larry is not one to ask.  I am hoping that one of his friends, on reading this, will come and keep him company.  Perhaps they can go to lunch together. 

 

 

July 2, 2009

I have just stepped onto the threshhold of my second bout with cancer and my family and many friends want to know the details.  I thought this blog could substitute for individual emails and letters, at least it is worth a try.

background:  My first bout came a year ago, in July 2008 I was diagnosed with lung cancer.  I entered immediately into treatment, which consisted of both chemo (epitome and cisplaten)and radiation.  I was very lucky; I never felt any nausea nor pain.  In Feb. I was declared cancer-free, in remission.  I'd have a scan every 3 months.

But the coughing, which led to the discovery of the cancer, remained.  I was sent to a lung specialist who  declared I had extreme emphysema.  I went from cancer free to invalid in the space of one week.

My life has been taken over by the emphysema.  I have a nebulizer, which I use 4 x a day, and an oxygen concentrator, with clear tubing snaking across the ceilings of the house to the bedroom, and another run to the livingroom couch.  I can have oxygen where ever I go.  When I leave the house I carry a portable oxygen tank with me.  This has not been life as I lived it before the cancer, although the coughing is slightly diminished.

In May I had my 3 month "look-see" scan and, alas, it showed the cancer had migrated - to the hip, to the liver and to the pectoral muscle.  I went immediately into treatment again - my fear was that it might migrate to the brain.  The purpose of this latest round of chemo was to keep it at bay, and away from the brain.  At the same time a brain scan was ordered, and it showed a small lesion (8mm) in the posterior of the left ventricle.  

Now I am really frightened.  I can fight the other cancers, and keep my self hood.  But in the brain, the seat of my ego and personality?  I don't think so.  

We have temporarily suspended the chemo, and I have elected to have brain surgery, using focussed radiation, at AGH in Pittsburgh. 

I talked with my friend Bob, who in real life is a psychiatrist, and knows more about the brain than anyone else I know.   He says that in that location it will not damage my personality.  He praises the team at AGH, even sent his daughter there several years ago to have a skin cancer removed.  You can't get a better  recommendation than that.  I am reasonably assured that they will get the cancer, and nothing else.  I will have a consultation with them next week, and will "report" what I learn on this blog.