Reborn

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and feeling better every day.

On January 9, I entered Sloan Kettering to prepare for my Allogeneic Bone Marrow transplant. I went in feeling fine and over the next 10 days, was pumped full of drugs which made me feel sicker and sicker. On January 19, I got a vial full of stem cells which my sister Nancy had donated. I was in the hospital until February 7…and I must say it is a time I may just want to forget.

Slowly, day by day I started to feel better and now, at home, I  am feeling more like my old self every day.

Today (February 11) is my actual birthday. I have a lot to be greatful for…

DAY OF REST

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Minus One

Today is indeed a day of rest.

Since I last wrote I have been pretty much nauseous non stop and spent a good deal of time with my head over a basin. I’m sure it  would have been much worse, without my kind nurses and their endless supply of wonder drugs. But I finished the chemo yesterday ( hopefully, I will never need it again.) and today the world is a very different place.

Tomorrow, I think about 1:00 I will receive Nancy’s gift…one large syringe full of life-giving stem cells.

SIBLINGS

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TEN OUT OF TEN

This is Nancy. She is appliqueing squares for a quilt which will be a gift to her grandson who will be born next month. Quilting is just one of Nancy’s many, many talents.

Here I am with my sisters Nancy and Gail. They came to visit today. The picture on the right is not of me and my sisters. Gail gave it to me, and whenever I look at it I think how lucky I am to have sisters.

 

I also have a brother named George…but I am sorry to say I do not have his picture in my computer.

I do, however, have a quote from Mansfield Park by Jane Austen (1814).


Children of the same family, the same blood, with the same first associations and habits, have some means of enjoyment in their power, which no subsequent connections can supply…

They can also, on occasion, save each others lives…

COUNTDOWN TO THE TRANSPLANT

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Back in the Hospital (again)

Yesterday I came back to Sloan Kettering.

Yesterday was day -10. Today is day -9. The countdown has begun, and on day zero I will receive  an allogeneic stem cell transplant. An Allogeneic transplant, in case you didn’t know, is a stem cell transplant which will replace my stem cells with new healthy ones from a donor other then myself. The donor in my case is my sister Nancy. She is a perfect 10 for 10 point match. My sister Gail and my brother George are wonderful siblings, but they are only 5 for 10 point matches…so for this particular purpose, I am very lucky to have Nancy.

Yesterday (Monday, January 9) I had a Central Venous Catheter placed  near my heart. This was a bit scary but, as with most of what I have experienced in the past several months, the reality was not as bad as the anticipation. Now it is Tuesday, and I have started getting “Busulfan” ,the first of the three types of chemotherapy I will get over the next week. So far, so good.

My room is actually great. I have no roommate and a nice view of the East River, Rockefeller University and the 59th Street Bridge (otherwise known as the Queensburo Bridge).

I also have a fine bathroom which I do not have to share…which is wonderful.

It has been a longish day and I think I should stop writing. I will now order my dinner and watch Jon Stewart. More of my adventures will follow in the days to come.


FAIRWAYS

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A thought for the season:

A block from our apartment on West 73rd Street is one of the most remarkable grocery stores in the world. I have always known that Fairways is special. Whenever I shop there, I try to go home with something which I have never tasted before. The vast array of food comes from all around the world: cheese and dairy, breads and cakes, coffees and teas, deli, olives, spices, oils and vinegars, fruits and vegetables, meats and fish, and all kinds of sauces. I could go on and on….

Fairways is also about the people. Everyone looking, talking, waiting, kvetching, choosing and interacting with each other and with all that food. It is a form of theater just to stand aside and watch.

On a recent visit I was overwhelmed by it all and found myself in tears. It is so good to be alive.

In the spirit of the season, I offer you a very short poem:

The world is so full of a number of things,
I’m sure we should all be as happy as kings.

Happy Thought
by: Robert Lewis Stevenson (1850-1895)
from: A Child’s Garden of Verses

Wishing you all a wonderful holiday and a happy New Year…

Mary

Half Way There

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Lessons

It is 6:00 on Friday morning and my fourth bag of chemo was just hung on the IV pole. I am now half way through my consolidation and will be heading home on Sunday for a five week break. So far this stay in the hospital has gone really well. No nausea and lots of energy to get myself to the 15th floor for decoupage and conversation.

And yet while my own progress is going well, I am surrounded by powerful examples of strength and sadness and love.

I just learned of one man on the ward who decided, after only one round of unsuccessful chemo, to check himself out and  go home to die. He was back for some blood work, but is still refusing chemo.

A friend’s roommate learned that she had leukemia when she had a routine blood test at the birth of her child. She went directly to Sloan Kettering, leaving four young children at home.

My new roommate is only 30 years old and recently married. She was diagnosed  shortly after finding out she was pregnant with her first child. Having lost the child, she is now is not only dealing with chemo, but also with the possibility of never being able to have children. Each night a family member stays with her so that she never has to be alone.

The stories go on and on, and yet this is not a place of despair. Mostly they are about love and support and hope. Here you find the best of what what is in human nature.The stories are about people who are helping each other though the rough parts of life.

I am learning a lot about the strength of the human spirit. I hope that I will keep these lessons with me as I move on into my own future.

Sing this one to yourself….by Bill Withers, preformed by the Temptations, way back when, and still a great song.

Lean On Me

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there’s always tomorrow

Lean on me, when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
‘Til I’m gonna need
Somebody to lean on

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don’t let show

Lean on me, when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
‘Til I’m gonna need
Somebody to lean on

If there is a load you have to bear
That you can’t carry
I’m right up the road
I’ll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you’d understand
We all need somebody to lean on

Lean on me when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
Till I’m gonna need
Somebody to lean on

Lean on me…

Back to the Hospital

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 One Foot in Front of the Other…Tomorrow I check into the hospital the first part of my “Post-Remission Therapy” It has been 26 days since I was told that I was in remission, and the bone marrow biopsy that my doctor did one week ago confirmed this good news.

My time at home has been great. I am not on any medication and my appetite has returned. There have been lovely visits with friends. I feel healthy and strong. Yesterday, I returned from a wonderful Thanksgiving at our house in Milford PA…family, friends, kids, music, walks, waterfalls and lots of great food. Now it is time to pack and face whatever this next phase brings.

Starting tomorrow, I will be in the hospital five days for “consolidation therapy” aimed at “eliminating any remaining leukemic cells” (see below). after which I recover at home for 5 weeks and then return to the hospital for the bone marrow transplant.

Am I scared?…Yes, of course I am, But at least I have a fairly clear sense of what lies ahead and a deep faith in my doctors.

Am I optimistic?…Yes. My doctors say they are aiming for a complete cure, and it seems like things are going well so far.

How do I deal with my current fears?…Well, writing this blog is helpful. So is cleaning the apartment and packing my bags very carefully. In general it is good to keep busy, which is why I will now stop writing and head out for a walk. I think I will buy myself a treat.

The information below is from the Sloan Kettering website. (I have found that it is a serious mistake browse the internet for information on AML.)

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Treatment for Acute Myeloid Leukemia is typically divided into two phases: remission induction and post-remission therapy.

Remission Induction

The goal of the remission induction phase is to induce a remission, a state in which there is no visible evidence of disease and blood counts are normal. Patients may receive a combination of drugs during this phase including daunorubicin, idarubicin, or mitoxantrone plus cytarabine. ( I got through this in five and a half weeks, after two rounds of chemo!)

Post-Remission Therapy

In the post-remission therapy phase, patients may receive additional treatment to eliminate any remaining leukemic cells. Treatment may consist of cytarabine given alone, often in higher doses, or a combination of drugs such as cytarabine, daunorubicin, idarubicin, mitoxantrone, and etoposide. Some AML patients may undergo either an autologous transplant (using the patient’s own stem cells) or an allogeneic transplant (using stem or bone marrow cells from someone other than the patient) during this phase of treatment. ( I will get an allogeneic transplant in mid January. My sister Nancy is a perfect match.)

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