This will be the final entry in Tippi's Cancer Blog. 7AM, Sunday October 10th

Tippi's life ended at about 4AM. She went peacefully with no indication of pain or anxiety.

About a week ago she was able to celebrate her 76th birthday. Friends dropped in throughout the afternoon and she shared in the good wishes and goodbyes. Steep decline started on Wednesday and ended a few hours ago. The Hospice night nurse made the necessary phone calls. Tippi had requested cremation. So now I'm waiting for the funeral home.

Our daughter-in-law Gail has been here during the final days. Friends, family and hospice have been very supportive. They have made a great difference to both of us.

Larry

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Better than "Beam me up Scottie"

The purpose of my blog has always been to show that no matter how difficult the problem presents itself, we can usually find some resource to bring us close to a solution..

There was a school reunion for my class at the end of this month and I strongly wanted to attend, mainly because two of my close friends from high school planned also to go and we all thought it would be the last time we'd see each other.

But the week before we were to make the trip -- which was six hours across the state, overnight at our sons house in eastern Pennsylvania and then another four hours north to Connecticut; it was clear that I couldn't do it.

We called my friend Ruth in Boston -- she is pretty computer savvy -- and got her to load in the Skype into her laptop and tested out between Boston and Pittsburgh. What a thrill to see her face and hear her voice and I think she was pretty impressed too. She and Angela, my other friend, would be staying at the same hotel and we arranged to have a Skype conference on Saturday morning..

Come that morning the phone rang and I switched over to my computer and answered it on Skype. I turned on my video button in order to see my face at the same time as they and hear the oohs and ahs and exclamations from my friends when they first saw my face. I told them to turn on their video through Ruth’s computer and then it was my turn to ooh and aaw and exclaim, seeing their faces talking to me from Connecticut.

What a perfect solution. We talked, the three of us, for over an hour, I had had a wonderful last visit with my friends and afterwards, they, at my urging, went over to the cemetery and had a first view of my stone.

And there I was, at home, and bed bound and talking to my friends like a character from “A Christmas Carol”.

New Lows

This is the hardest blog to write. I am pretty much bedridden and can not receive visitors. Larry is taken good care of me and is making sure I eat and take the proper pills at the proper time

the next step

I was surprised at how quickly my condition went bad. A week ago I woke with a pain in my right leg, which is one of the sites of cancer. I knew the pain would eventually come, and that it would be severe.

The first day I got around , like an orangutan by moving from one piece of furniture to the next. And it convinced me that now was the time to call hospice.

The intake nurse came on July 1. Nice and clean, I am starting the second half of this year in hospice. She checked all my present medications and indicated which ones hospice would cover. I would have to change to a different oxygen system. They ordered a walker with wheels, and a potty chair for me.

On the 2^nd the equipment and the oxygen was delivered. A seamless change-over! The wheeled walker is wonderful, smooth moving and quiet and really sturdy. We stored the potty chair in the basement. In the evening a driver delivered a bag of medications. After I signed for it, I looked at the packing slip. I did not recognize a single medication, and I did not recognize the ordering doctor. Clearly they had sent the wrong order, and some one who needed these medications was not getting them!

A phone call to hospice the next morning cleared it up. This was my emergency package, with extreme medications for emergency, to save a trip in the ambulance.

Today, a visit from my visiting nurse, the same who had been here before. Just to get our schedules in sync. Now that I have “someone to watch over me” I am feeling more relaxed about this pain.

But it will have an impact on my gadding about. Anyone who takes me to lunch will have to take me and my walker and my new oxygen bottle. I am still happy and comfortable to have friends come visit, and admire my flowers and my porch.

Before the pain hit me, my niece and her husband came to visit. We had a wonderful 2 days, they kept the visits short and it was so good to see her after so many years.

the next step

All on the same day, I received emails from 3 distant friends. “Why haven’t you updated your cancer blog? You leave us hanging in a not very good space!”

When you are on a plateau, with each day similar to the last, and no improvements, it is easy to forget obligations like a blog. I owe you all better.

The purpose of the cancer blog was to report my experience from the inside, But as time went on and I found the cancer easy to live with – even when I was deep in chemo and radiation, it became a cause: to defuse the fright people face when diagnosed with this dreaded disease.

Now we face a different challenge: my easy cancer has turned out to be tenacious and has resisted treatment. It is still with me. I am not willing to move on to harsher chemos, and so I have opted to sign up for hospice.

Not the end of life hospice, but an intermediate step, palliative care. I can always opt out of this stage of hospice and return to serious chemo. It is reassuring to think I can, but I don’t think I will. My body longs for a rest.

I will have a visiting nurse and social worker, who will offer us their support. We are not making this journey alone.

Meanwhile, we are looking into two problems that might be corrected; I have not spoken like a normal person since March, it’s a raspy, squeaky voice, very pianissimo. There may be some damage to the larynx. And to my esophagus, which feels like it has closed. Only the most finely cut foods will slip down it without pain. The result is that I am eating less and less and have lost a lot of weight.

I think of myself as a reporter, embedded with the team, as I make this final journey. 140

a rough spot

I have been reminded by some of my friends that my blog needs to be updated. How true! The thing of it is that I have dedicated this blog to point out the positive – that I have lived with cancer for over a year and a half, and for the most part very well. There have been rough patches, which eventually get resolved. I don’t like to write when I’m down.

I am in a rough patch right now. My oncologist knew, and I knew, that the last scan would be bad. And so it was. The cancer was still there, and had not been reduced. That is so discouraging. So now I am on a heavier soup of chemo, which brings with it the heavier side effects. Losing hair, nails effected, and the coughing is back, which affects my sleep. I am very tired.

And then this February’s snowfall is enough to make anyone depressed.

There are positive notes. Not is all gloom and doom. My husband takes such good care of me. I have found a driver for those days he is not available. My church circle meets at my house so I have company at least twice a month, and one or two stalwart friends make it over from time to time.

And my precious grand daughter, who is a freshman at Pitt, comes for the weekend every two or three weeks – even in all the snow! Last weekend she was here to keep me company, cook us a wonderful eggplant parmesian dinner, and do her laundry.

the next step

Jan. 25, 2010

. Today my life was dominated by a full body PET scan at Jefferson. I have reason to believe the results will not be good and will result in some heavy duty chemo, and this is upsetting.

Larry left me off at the hospital at 8 am and, after registering, I went to the multi test room for a double blood draw – for the Nuclear Medicine people and for Jalil.

And then the long walk down to Nuclear Medicine. Luckily I had my oxygen pack with me.

At the nuclear medicine center I sat and waited for nearly 45 minutes for the infusion center to send down someone to access my port. She was a chipper young blond who wanted to know what was good, but in my mood, nuttin was good. She did complement my hairdo.

Once my port was accessed, they poured in the radioactive dye and had me nap for an hour. And I really fell asleep.

Then I was wheeled (by wheelchair) to the outboard trailer that holds the CT/PT machine, followed my a cluster of executive types, evaluating the system.

Up into the trailer, down on the flatbed, and at a very slow pace, rolled through the machine. I was very good and still and did not cough once.

Back at the nuclear medicine center, the infusion girl was waiting to de-access my port, and then I was free to go!

It was nearly 1 pm and I was famished.

We stopped at chilpotle grill on the way home, and got a basket to share. A good lunch for the both of us, rice and vegetables and beef with sour cream and guacamole over all.

And then I slept. I just couldn’t get enough sleep!

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.