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!