on Love

Our discussion group had an interesting topic this month – on love, lust, sex and how science has changed them.

Let me speak on love, and the curative power of love. A power that science, with all its instruments and theories, cannot quantify.

I sincerely believe that the power of love has made it possible for me to be here, a year and a half after I was given only months to live.

Let me try to explain.

Too often, we take our friends for granted, and then in an instant they are taken from us – – and we cry out, “But I didn’t have a chance to tell him how much he meant to me, how much I loved him!” or “what an impact she had on my life.”

Cancer is a generous disease, it gives us the time to show how much we care. When we leave, we leave behind no regrets, no missed opportunities to reach out to family and friends.

I have been surrounded by love this last year, from so many Sunnyhillers, by my family and friends, by my neighbors. They have shown their love through hugs and attention and by 100 kindnesses. This love has come not only from those I always counted as friends, but also from so many others. They have provided me with rides when I could not drive, meals when I could not cook. I have been given me an encouraging word and a pat on the back when I needed them.

And my husband has been so wonderful. He has become a soul mate and help mate and is there for me. He is both a pusher and a puller. He pushes me when he thinks I am up to a task, and pulls me along when I’m not. He nags that I should get out more, eat more, do my breathing exercises. On mornings when I can’t bend over to tie my shoes, he is there. And many an evening I am not up to cooking, he takes over in the kitchen. He drives me when I am not up to it, and lets me go when I can. He encourages me to be as strong as I am able. And all this is love, better shown than said.

thanksgiving video

Going home for the holidays means traveling across the state to our son's home in eastern Pa. He makes the best roast turkey on his Weber Grill. We made this little video 2 years ago and put it up on YouTube. It has received over 9,000 hits during those 2 years and gained another 1,500 over this Thanksgiving holiday!

feeling well, looking up

I had a six month's check up with my primary care physician and reported to Larry when I got home that he, the doctor, thinks that my recovery has been nothing short of remarkable.

Later, that evening, I heard Larry singing in the shower -- something he hasn't done for over a year!

the plot thickens

We drove to Connecticut for the weekend; I needed to clear up some problems with my cemetery plot there. I am in the surprising position of having two plots in that cemetery and telephone communication has been a frustrating exercise.

We were raised in Westport; my parents are buried in the town cemetery, and Larry grew up on the street adjoining it and used it as a playground. It seemed the appropriate place for us to have our own COMDEN plot.

PLAN A – in 1986, with an unexpected bonus weighing down my pocket, I decided to buy a Willowbrook plot. I was spending a lot of time with my mother-in-law in CT that summer, and one day we went over to select a plot. One had just opened up that was perfect! In the older section, within sight of their old house, and a short walk from my parent’s grave. And the price happened to be just a little more than my bonus. I bought it. I filed the papers away, sure that I was set when the time came to need it.

When my cancer was diagnosed, I brought out that file and began to outline plans to have my ashes buried there. Alas! A big monkey wrench was thrown into my plans – by Larry Comden who pointed out that it was an awfully expensive practical joke (I planned to have our epitaph read: And we couldn’t afford to live here. True. Then he said, ‘your plot is for full burial and we plan to be cremated. True. Then he said, “I don’t want to be buried in Westport”. In 22 years, I had never asked.

And, although he was the objector, it was up to me to sell the plot. I learned that the cemetery would not buy back the plot. I didn’t trust the on-line broker who promised to sell it – for a hefty fee. What to do?

PLAN B - By summer I had come up with Plan B: I would donate it to the local UU Church who would know how to advertise its availability and could keep the $3000. Donation to a worthy organization, problem solved!

Not quite. I was presented with a phone tree and picked the business manager as the appropriate person to approach with this donation. I left a message. There was no call back.

Then I sent a long email to the church, explaining who I was, what the plot was and why I wanted to donate it to them. Still no response.

Finally, thinking that they were perhaps on vacation, I asked Rod to contact their pastor, which he did and received an enthusiastic reply and a promise that the business manager would get in touch with me. But they did not respond, not even a “thanks but no thanks”.

PLAN C - During all this time I gave a lot of thought as to why I wanted to be buried in Westport, why Pittsburgh, my home for over half my life, was not to benefit from my ashes. Willowbrook is a beautiful, well kept cemetery, and I know most of the sections in it very well. It holds the bones of my parents and their friends, and of my friends parents, and of the business men in town, and my doctor and dentist. Some of my teachers. The librarian, some of the town cops. It is a comfortable place. I visit it each time I go to Westport. This was where I want to go. I also want a Comden presence in the cemetery; Larry’s parents were important in the town the many years they lived there (they are buried in Long Island). PLAN A would have covered both points. But why waste the space of a double plot for a single cremation?

I called the cemetery back and offered an even-steven trade – my double plot for a single cremation plot. The manager countered - I could have my urn buried on my parent’s plot, and add a footstone with my name on it, and they would try to sell my double wide, double deep, excellently located piece of ground.

So that is where it stands. And I like the thought of returning to my family fold. I am trying to talk my sister into joining me. And, if it hasn’t sold by the time I die, it will be back to PLAN A which I will also have set in place.

It was a trip worth doing, and we had several visits with friends still there as a bonus.

Celebrations!

I have great reason to celebrate – the scans all came back clean and I am cancer free, at least for the moment, and I passed my 75^th birthday! Is this the point a woman does not mind disclosing her age? For me, most certainly. I am delighted to be 75.

I gathered some close friends, including my grand daughter Hope, and took them all to brunch at the Grand Concourse Restaurant – one of the grandest buildings in town, it once was a railroad station with vaulted ceilings and stained glass. And the brunch is sumptuous! I don’t eat the way I used to, but imagine, lox galore! Donuts straight from the lard, just like my grandma used to make. (OK, grandma used lard, they probably use something a little healthier). Rare roast beef, bacon, omelets to order and waffles with many toppings. I could go on and on, just as we ate on and on.

And then, more reason to celebrate, I finally got a laptop. A lenovo, identical to Larry’s, so that if it develops any quirks – as mine usually do – he will be able to untangle it. I can use it sitting on my sofa, I can take it on trips, I can exchange files with my Mac. The only thing it can’t do is video, I’ll have to wait until I get the Mac repaired to go back to editing.

Of course, my friend Clem couldn’t resist claiming it for his own. Fat chance!

And finally, a thumb of the nose at mortality. Every year I am able, I shamble at the Zombie walk at Monroeville Mall. Zombies, I feel, are as much victim as menace; how else do you get more vampires. And the crowd grows every year.

Am I the oldest zombie shambling along? I am the only one carrying her own oxygen (it was labeled “Swamp Gas” – more likely sustenance for a zombie than oxygen.

Good news!

Good news! Good news! I have just returned from the oncologist where I was told that last week’s scans show me, once again, to be completely free of cancer.

On my last blog, I was worrying about the return of the cough. I immediately scheduled an appointment with my lung doctor, who changed one of my medications. Simbicort has diminished my coughing greatly and this last week I have been breathing better and better. I was even out on my bike one afternoon.

At the same time, the oncologist scheduled the two scans, a PT/CAT scan of the full body and an MRI of the brain and those were the results read to me today.

But with each rainbow comes a little rain. On Thursday I had a dentist appointment and he uttered the two most hated and feared words in my universe: ROOT CANAL.

So here we are. Delighted to be officially cancer free again, crushed to have to face the root canal.

a step backwards ----

Everything had been going so well – I’ve been driving myself to the store, to most Dr. appointments, to church. We have made it a point to have at least one outing a week, and to include friends when we go.

And I have been feeling really good. The fall weather is glorious!

But Monday I began to cough again, and this is incessant, unproductive, bothersome. I sleep about an hour and then wake up coughing. Unless we can quell it, I will be barred from meetings and concert halls.

My lung doctor has prescribed a stronger inhalent and we hope that it will quell the cough. But it takes time to take effect.

I looked at a chart in his examination room, showing the evils of smoking. Of course, it included lung cancer. The illustration depicts the tumor thrusting itself into the bronchial tube. That is what my present “tickle” feels like.

And the PT scan should show if it is the lung cancer that has returned.

So here I am, in limbo, on the edge. I am otherwise feeling generally good, although tired from and of all that coughing. I have a scan next week and will see my oncologist then, and then we’ll know better where I’m at.

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.

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.