Here I Am

We had a wonderful Christmas with the kids and our families. I had been in quite a bit of discomfort before Christmas, but on Christmas I felt great and was able to really enjoy the morning with the kids. We then had our parents, Kelly's grandfather 'Pa,' and his Uncle Bob and Aunt Brigid over for supper. It was a joyful, fun, simple Christmas.

And, I must confess...I was completely against having Play Doh in our house, but the boys love it. So I will live with little dried up bits of Play Doh as long as it comes with happy children!

As some of you know, I am currently admitted to the hospital. I went Friday to see Dr. S. due to some severe abdominal pain and a stomach bug and he felt the best option was to admit me for IV meds and fluids. I am feeling better as long as I stick to clear liquids. I am hopeful to be released tomorrow because I am supposed to go see Dr. Chan at Dana Farber (in Boston) on Monday for the 'big plan.' I'll see what the on-call docs say tomorrow. They all know I want to go, but they also want to be sure I am well enough to make the trip (about 8 hours round trip, plus the visit).

I had several visitors today, which was wonderful and helped to pass the time, but my little boys stayed home due to infection risk. We tried to FaceTime, but I really miss my boys. It is one thing hearing about their days, it is another to be part of their days.

Pictures

I am a big advocate of picture-taking. Both by professionals and on the fly with my iPhone. I am not a fan of how I look in all the pics, but I fight the urge to hit the delete button (which is oh so easy) because in each picture there was something I wanted to capture.

For the past few years, we have done a family photo session around Thanksgiving. Here is the family picture that made the Christmas card cut:

 

 

After our Thanksgiving photo session we select one image to print in a 16 x 20. And while I really like the picture we used for the Christmas card, we chose this picture:

 

 

A little less formal. A little more Murphy. A whole lot us.

 

So go, take pictures. Take perfect pictures, and horrible ones. Don't delete any right away. Go back and look in a few weeks, a few months. I bet all of them will bring a smile to your face.

 



PET scan results and my left leg

The news is not what we were hoping for. The neuroendocrine cancer is advancing.

The tumors in my liver are growing.
There are new tumors in my liver.
The tumors have spread to my lymph nodes.

Dr. S is working on a treatment plan with Dr. Chan from Dana Farber and in the meantime, I wait. With great confidence in Dr. S.

I found this out around 5 on Thursday. About 5 minutes later I punctured my left foot. Friday AM I went to my general practitioner and learned that the puncture was infected and that I have a blood clot in a major vein in my left calf. Treatment involves resting and blood thinners. 18 hours in and I am bored to tears....


- Posted using BlogPress from my iPad

Candlelight

Tonight is the worldwide candle lighting to remember children who have died.

We light our candle in memory of Cora.

12.01.12

Today Kelly and I completed a 5K. There are Team SMAC shirts under the layers, but it was a cold morning!





We all went to visit Santa. Rory was so excited he couldn't stand still, Kyan was so nervous he shook, and Crosby was happy as could be.




Then, Kelly and I went to dinner with some great friends.




Today marked 9.5 months.
I am still here!

Her Name

In the pasta aisle at Hannaford there is a whole section of foods that are the Cora Brand. The label coloring is loud and has a picture of a young girl on the label.

I watch Downton Abbey and Once Upon a Time, two shows which have characters named Cora in them.

Kelly and I went to see the movie Argo tonight at the local dinner and a movie place. We were settled in, eating our dinner, and then it happened. One of the hostages was named Cora. Her name was said several times in the movie and also had a scene where her name was in writing.

I try to think of her name in these places as a reminder, a sign, a butterfly, but it guts me, hearing and seeing her name.




How are you feeling?

I have all of these ideas in my mind, but my brain doesn't work quite like it used to (more on that later), so I have been using avoidance. Why write if I can't get exactly what I want out? But if I don't write, my sentence structure will be even more of a disaster. So I will write about something simple and go from there.
[Speaking of sentence structure, Michael Chabon's new book has a sentence that runs about 3 pages, contains several thousand words, and is grammatically correct. Show off.]

Now that I am out and about again many people ask me how I am feeling. I go for the easy-out answer and answer that I am feeling pretty good, tired at the end of the day but that I am not sure if that is having three small boys or recovery.

The truth is I do feel pretty good, but I am not where I want to be. I am in physical therapy to help with the neuropathy (numbness in my fingers, toes, and soles of my feet which is a side effect from chemotherapy). I started by re-learning how to balance on one foot ~ a bit of a challenge when you cannot really feel if your foot is grounded. I am now working on some simple yoga-style balance postures. Here is what is fantastic about this whole thing: My fingertips are numb, so when I am in a balance posture and start to wobble, the natural thing is to touch my fingertips to the wall, but that doesn't register as well as it should. I figure that sooner or later, I am going to take a header. Try not to judge me too harshly when you see me with a big bruise on my forehead.

My strength and stamina are both at about fifty percent. I can make it through a swim practice, but my speed is not where it used to be. I have also started spin class again. I go, I muddle through, I am thankful for my padded seat cushion (because, as I learned after my first attempt to return to spin, still healing).

In terms of day-to-day life ~ chasing the kids, running errands, making meals, laundry, etc. ~ that feels normal again. The boys' nanny has decided to go to work for another family and I was concerned that I would be exhausted without her help, but it has been fun. It feels great to be able to truly re-engage in life again. Rather than just being a presence in the house (an exhausted, stressed, ball of nerves presence), I am back to being part of our family.

This and That

Several people emailed praising the service for Cora and the comfort it brought to them. It brought the same to us, which is why I wanted to share it. In my post, I did not give any credit to our minister, John Barclay, who put the service together for us based on our nods and murmurs to his suggestions.

Also, someone commented on the post about Cora's service. I know it was a woman who is a pastor, but then as I was reading the comment on my phone, I hit delete with my thumb. I just wanted to let her know I didn't delete the comment intentionally and also to let her know if she wants she can email me at suzanne.murphy@gmail.com.

Thank you to everyone who has sent messages or seen me in person since I received the biopsy results. I keep saying that your positive energy and prayers helped get me to this point!
I have noticed a little confusion about my status, so hopefully this will clear it up:
The biopsies showed no sign of the cervical cancer. I will now be followed about every 3 months by the radiation oncologists at Glens Falls Hospital.
The tumors in my liver are still there, and most likely will be there for the rest of my life. In December, I will get a PET scan to determine if they are staying stable. If they are, then I will carry on with my monthly shot. If they are not, well...they are going to be stable so we aren't even going to go there.

Finally, a favor.
I have a wonderful neighbor named Lisa, aka "State Farm." She has been a great friend, neighbor (like a good neighbor, State Farm is there), and Bunco girl. Last week, her dear sister Patricia lost her battle with ovarian cancer. I would ask that all that positive energy you have given to me, you share with Lisa and her family, as they say goodbye to Patricia. 

Making It Through

A huge thank you to everyone who helped us through the helliversary. The cards, messages, and calls were all welcomed, and filled with stories of how you remembered Cora. One of the things that caught me very off guard was a Facebook post started by one of the nurses who took care of Cora when she was born, and then many of the other nurses who took care of her commented on how they remembered caring for her. It was lovely to read how she was rocked and cuddled by these amazing women when I was not there.

Over the past year, many people have reached out to help us in ways we didn't even think we needed. One of these people is a woman from my church. I didn't know her well, but this summer my mother brought me a box with a gift from her. I opened the box and in it was a beautiful handmade pillow with Cora Lily's name on it. My mother told me that several years ago this woman lost her daughter and a friend of hers had given her a similar pillow. Over the years her pillow became worn. I thought the pillow was lovely, but it wasn't until a few days later that I understood how her pillow became so worn.

Last Sunday was All Saints Sunday, which is a day to remember those who have passed into Heaven. After the service the woman looked at me with a smile and said: "We'll see our girls again."
It was exactly what I needed to hear.

Biopsy Results

Short on time, but big on news ~ so enjoy the extra typos.

My cervical biopsy results came back yesterday...all were negative. Yippee! This is excellent news.
This means it does appear that the chemo/radiation combo was effective in treating the cervical cancer and that a hysterectomy is off the table because it is not necessary.

HURRAH!!!!

My next "big" thing is another PET scan sometime in December. That will be used to assess the tumors in my liver (ideally remaining stable) and also check to see if there is anything of note in the pelvic area (hopefully not).

Cora's Eulogy

A year ago today we held Cora's funeral service. When we met with our minister, he asked if we wanted to speak at the service. Neither of us were able. I don't think I could have made it through without crying; I don't think I could make it through now if I had to read this aloud.

Shortly after I found out I was pregnant, but before I had an ultrasound, I told Kelly that I thought I was pregnant with twins. I had no evidence, simply a gut feeling. When we went for the first ultrasound and the tech told us that we were expecting twins, we started laughing ~ at first because we could not believe it, and then more nervously when we realized we would have four children under four!

We found out the genders for Rory and Kyan by ultrasound, and I had asked Kelly if he would be okay not finding out for baby three. He agreed, and even when we found out we were having twins, we decided to wait until they were born to learn their genders. So ultrasound after ultrasound I said no to finding out the gender(s). Until one day when the ultrasound tech slipped up and suddenly I knew. I knew Baby A was a girl and Baby B was a boy, and I instantly knew that one of each was exactly what our family needed. And I also knew every single name on our "girl" list was not right (and that the one name on our boy list was exactly right).

After Kelly and I settled on Cora, we then went to work on her middle name. The boys all have middle names based on family names, and I wanted Cora to have the same. We chose Lily, which is the meaning of Suzanne. Cora Lily Murphy ~ girly, but not frilly; unique, but not bizarre; the perfect name for our daughter.

We had a great team with us the day Cora and Crosby were born. One of our nurses took tons of pictures for us as Cora, who was older by a minute, and Crosby, were delivered. The nurses brought Cora over and put her into Kelly's arms and I just stared and her, and then at Crosby. I couldn't take my eyes off of them. One of the nurses asked me to say something about how I was feeling for a video and I didn't even have words. It was perfect. My family was complete and I was the blessed mother of four beautiful children.

In a eulogy we remember and celebrate a person's life, often through stories that capture the person's personality. We don't have many stories, but I can tell you that Cora was sweet, but also feisty. She quickly learned that her cries brought mommy or daddy running to her. She was working very hard on focusing on the little animals on her bouncer. And somehow, she had already mastered having her older brothers dote on her endlessly while being near her younger brother could soothe her when nothing else seemed to work.

I have thought a great deal about what I hoped for in Cora's life. I have thought about all the wonders in life that she will never experience. But I have also thought a great deal about her short time with us and what she experienced during that time. The pure joy and love she felt when the nurse placed her in Kelly's arms for the first time. The blurry smile she saw on her grandma's face in the operating room. The wonder her big brothers had when seeing her for the first time. The ease we brought to each other when I held her in my arms. And this one thing I know ~ Cora experienced love. She was truly and deeply loved. She is still truly and deeply loved.

Cora's Service 10.28.11

THANKSGIVING FOR LIFE AND RESURRECTION

Cora Lily Murphy

OPENING SENTENCES

Friends, within the healing embrace of God's love we have gathered here to thank God for the life of Cora Lily Murphy and to entrust her into God's eternal care, knowing that God's good and loving purposes for his people cannot be defeated by the power of sin and death.

We are all children of God, and in the faith that God has given us, we turn now to the Lord asking for his comfort and grace to be with us all ― and to be especially present with Suzanne and Kelly and all of their family and friends who were privileged to love Cora during her all too brief time with us on this earth . . .

We gather here as God’s people, conscious of others who have died and of the frailty of our own existence on earth. We gather also to hear God’s word of hope, and to anticipate the future as we remember that our own lives, as well as Cora’s brief life, are always in God’s loving hands.

PRAYER

Compassionate and loving God, yours is the Beauty of childhood and yours is the fullness of years. Comfort us in our sorrow, strengthen us with hope, and breathe peace into our sorrowing hearts. Assure us that the love we had for Cora was not in vain – indeed make it a part of the store of goodness you are even now pouring out upon her in your eternal kingdom.

Help us to bless you for the gift you gave us in her, for the joy she gave all who knew her, for the memories that will abide with us, and for the assurance that she lives forever in the joy and peace of your presence. Guide us through this time of sadness with the light of your love and the strength of your compassion; through Jesus Christ our Lord we pray. Amen.

HYMN 280 Amazing Grace, How Sweet the Sound

SCRIPTURE READINGS

Hear these words from Holy Scriptures, words written by the Apostle Paul as he considered the perils of human life and the sorrows that come to it - and within these - the love of God as revealed through Christ Jesus - who died on the cross that we might live - and rose from the dead that we might have life eternal. I consider that the sufferings of this present time are not worth comparing with the glory about to be revealed to us. We know that in everything that God works for good with those who love him, who are called according to his purpose.

What then shall we say to this? If God is for us, who is against us? He who did not withhold his own Son, but gave him up for us all, will he not also give us all things with him? Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness or peril, or sword? No - in all these things we are more than conquerors through him who loved us. For I am sure that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Friends, the Apostle assures us that nothing can separate us from the love of God. Knowing this – even in the midst of our sorrow today - we thank God for the inheritance, the loving embrace that Cora, though but a tender infant, has already received from God.

We thank God, not for taking her from us - for it is not God's will that anyone should perish - but rather for granting her a place with all the saints - a place where, when our time on earth is ended - we may join her and know the fullness of that which, in our life here, we had only just begun to know.

I would like now to share with you two other brief scripture readings and then say a few words about how they relate to what we are doing today.

The first reading is taken from the 18^thchapter of Matthews Gospel:

At that time the disciples came to Jesus and asked, "Who is the greatest in the kingdom of heaven?" He called a child, whom he put among them, and said, "Truly I tell you, unless you change and become like children, you will never enter the kingdom of heaven. Whoever becomes humble like this child is the greatest in the kingdom of heaven. Whoever welcomes one such child in my name welcomes me." Take care that you do not despise one of these little ones; for, I tell you, in heaven their angels continually see the face of my Father in heaven. What do you think? If a shepherd has a hundred sheep, and one of them has gone astray, does he not leave the ninety-nine on the mountains and go in search of the one that went astray? And if he finds it, truly I tell you, he rejoices over it more than over the ninety-nine that never went astray. So it is not the will of your Father in heaven that one of these little ones should be lost.”

The second reading is taken from the prophecy of Isaiah and speaks of the time when the Kingdom of God is fully established upon the earth. In it we hear the voice of God speaking of that time which is yet to come:

"Behold, I will create new heavens and a new earth" (says the Lord) "The former things will not be remembered, nor will they come to mind. But be glad and rejoice forever in what I am creating, for I am about to create Jerusalem as a joy and its people as a delight. I will rejoice in Jerusalem and delight in my people; no more shall the sound of weeping be heard in it, or the cry of distress. No more shall there be in it an infant that lives but a few days, or an old person who does not live out a lifetime; for one who dies at a hundred years will be considered a youth, and one who falls short of a hundred will be considered accursed. They shall build houses and dwell in them; they will plant vineyards and eat their fruit. For like the days of a tree shall the days of my people be, and my chosen shall long enjoy the work of their hands.”

This is the word of the Lord. Thanks be to God.

MEDITATION

During these last several days, as we have lived with the untimely death of baby Cora our hearts have been full of questions - chief amongst them being "Why did this happen?" and/or "How did this happen?" These questions have been not only in the hearts and on the minds of Suzanne and Kelly and their families, but upon the lips of many of you who are here this morning and they are always heard at times like this.

We are not here today to answer these questions - even if we could. Rather we are here to mourn - to mourn and to commend Cora into God's care, and to ask God to help us - and most especially to help Suzanne and Kelly, their parents Gwen and John, Janet and Toby, grandfather Gordon, siblings Andrew and Shawn along with their other family members and close friends, through this tragedy.

In the most beautiful of gardens, even those tended by skillful botanists, there is occasionally a rose that buds, but never opens. In every way this rose is like all the others, but something keeps it from blooming. It fades away - or disappears - without having reached maturity. What happens in nature's garden very sadly also happens once in a while in the garden of God's human family. A baby is born ― beautiful and precious, but fails to come to its rightful unfolding. This child, like the bud that never fully opens, is gathered back into God's heavenly garden of souls ― where all imperfections are made perfect; all injustices made right; all mysteries are ultimately explained; and all sorrows turned finally into happiness.

Today, we mourn our own loss of such a child. We weep for Cora and ourselves, just as Jesus himself wept at the death of his dear friend Lazarus. Even if we knew the answers to the questions that rise so naturally in our hearts and minds at times like this, there still would be no adequate explanation for this loss. It is incredibly painful. And I believe it is also painful to God, who created the world intending it to be perfect. As Jesus himself said in our earlier reading: "It is not the will of your Father that one of these little ones should perish, should be lost."

And, as promised to us by God through the prophet Isaiah, there will come a time when there is a new heaven and a new earth ― a time when never again will there be in it an infant who lives but a few days, or an old man who does not live out his years - a time so glorious in its presence that a person who dies at a hundred will be thought a mere youth; and they who fail to reach a hundred will be considered accursed. But this, sadly, is not yet that time. Rather this is the time when heaven remains beyond us – and we on earth below; the time when the joy of eternal life is experienced only in its fullness when our mortal bodies perish, much as a flower can come forth only after a seed or bulb is planted in the earth and loses its form.

In Matthew’s Gospel Jesus spoke of angels above ― angels who watch over the little ones of this earth. He spoke of them when he told his disciples to be careful, and not to think less of little children simply because they are little children ― because in heaven, he said, their angels continually see the face of God. There is a special place in the heart of God and amongst the angels for the little ones of this world just as there is a special place in our hearts today for Cora.

And so we weep at what has happened.

And so too – does God weep along with us.

What can be said that might ease the pain or assuage the grief we all feel today? There isn't much we can say that will help. We can express our sympathy and sorrow. We can offer our words of love, of our care and concern. We can and will pray for God to comfort us. But other than that we don't know what to say about these things.

Suzanne and Kelly, maybe it is because people don't know what to say that they sometimes say things, which, I believe, are not helpful.

Some people may say that Cora's death at this time was God's will. I know you don't believe that.

The God we worship, the God who watches over us, does not will the death of babies or the pain of their parents. Many, many things happen in this world which are not the will of God. That is part of the price of the freedom God has given us.

Some people may say to you that God wanted Cora in heaven with him. While I am confident God has welcomed Cora into his kingdom, I am sure God did not want her to die to keep him company.

Some people may try to comfort you by saying to you that you are still young enough to have another child or that you still have three. All those things are true, but no other child can ever replace Cora. She was her own person.

The empty place her death has left in your heart will not be filled simply because you might have another child, or because Rory, Kyan, and Crosby ― precious and loved by you as they are, remain with you. Nor should it be. Every child, like Cora, is unique and precious.

I’m sure that people who say things like these are well-intentioned and say them from a sincere desire to comfort you. They want to say something that will help. We bless them for it ―- but we know that we are faced with a mystery ―the mystery of life - and of death - for which there are no easy answers.

So "What" then, "are we to say to these things?"

It is not a complete or final answer, but what St. Paul provides, provisionally, at least, is this:

"If God is for us, who can against us? He who did not withhold his own Son, but gave him up

for all of us, will he not with him also give us everything else?"It is important to know that God is for you, that God did not do this to you. God did not will Cora's death or your pain. But God is with you in the midst of it all and will help you through it. God is for you. What’s more, God gave up his own son for us all.

Kelly and Suzanne, I believe God shares your pain ― God also had a child, a son who died, on a cross, for us. And because Jesus rose to new life we can be confident that Cora has new life also. Today ― in our grief ― we believe there is another angel in heaven. Cling to that hope ― that promise from God ― and allow your tears to help wash away the pain in the days and months to come.

PRAYER OF THANKSGIVING

Gracious and Loving God, whose Son Jesus took little children into his

arms and blessed them; we thank you that you gave Cora to us, even for a

brief time; and we thank you that you caused our hearts to love her.

We praise and bless you for the assurance that you have received her to

yourself, and that you will keep her now and always.

It was your love that gave us life, O God, and your care never fails.

Yours is the beauty that was in infant Cora, and yours also the light that shines

in the face of older age.

For all whom you have given to be dear to us, we thank you, and especially

for Cora Lily, who now lives with you.

Into your love we commend her, remembering the words of Jesus,

Let the children come to me, for of such is the kingdom of heaven.

None of us, O Lord, is wise enough to understand or know why this happened;

but we are human enough to grieve with Kelly and Suzanne, Gwen and John,

Janet and Toby, and all their relatives and close friends, and to express

our care and concern for them.

In these moments together we return to you the potential of Cora’s infant life,

which for us will not be.

Even as we do so, help us recommit to you the potential in our own lives,

which ― through your presence and power ― may yet be realized to your glory.

Hear us, we ask, as we commune with you now in a time of silence ―

these and other thoughts we have.

Unto your eternal love and care, O God, we commend Cora Lily,

grateful for your promises of eternal and abundant life.

O God, whose compassion never fails; we commend to you those who mourn,

especially Suzanne and Kelly.

We remember too all the other close family members who have been denied the joy of seeing Cora blossom and grow in our midst.

Grant unto them, and to all of us who weep today, your strength - and uphold them with your living hope.

May the words of Jesus, which revealed his love for little children,

speak peace to their troubled hearts.

Enable them to know that Cora is with you, safe in your eternal care,

blessed beyond our imagining.

And reassure them that in your own good time they will see her again.

Hold us all in your keeping, and make tender and true the love we have

for each other.

With your peace, O God, uphold us, and in your love keep us,

this day and forevermore. Amen.

HYMN 404 Precious Lord, Take My Hand

BENEDICTION

Now may the Lord bless you and keep you,

the Lord make his face to shine upon you and be gracious unto you,

the Lord lift up his countenance upon you and give you peace,

this day and unto life eternal. Amen.

Thankful

Last November I wrote one of these thankful statements each day over a period of several weeks. I feel it is worthwhile to publish them again, though this time all at once. I must note that this list is missing many people (in particular my brother, my in-laws, my brother-in-law and his wife), but copied below is the original series of statements.


I am thankful for all the members of the West Glens Fallls EMS, the Queensbury Central Fire Department, and the Warren County Sheriff's office who were at our home within minutes of our 911 call. We didn't learn most of their names, but are thankful they left their homes on a Saturday night to rush to ours.

I am thankful for our neighbors ~ the ones who came to stay with our boys when we rushed to the hospital, the ones who brought us food, the ones who came and sat with us, even when we couldn't speak, and the ones who have been there in numerous other ways.

I am thankful for the ER staff at Glens Falls Hospital who were able to restart Cora's heart and stabilize her for her trip to Albany. Again, we did not learn many names, but appreciate the nurses who worked around us so we could hold Cora's hands, the doctors who answered our endless stream of questions, the aide who held Cora's respirator tubing in place for well over an hour, the clinical manager who came in one her night off to support our family, and all the other staff who helped try to save our baby girl.

I am thankful for the quiet moment of Cora's baptism. It was the simplest of baptisms with our minister, my parents, the hospital staff, Kelly and me; the water was in a paper cup from the tap;  and for a moment the pace slowed down as Cora was baptized.

I am thankful for Amy, Cora's first pediatric ICU nurse at Albany. I could tell you about many ways she helped us, but to me the most important was the steady support she provided us in the minutes and hours after we learned Cora would not survive.

I am thankful for Krystal, Cora's second PICU nurse. She helped us with the delicate process of moving Cora from one set of arms to another, she arranged for a room and food for our parents and children; and she cried with us when Rory asked when Cora was coming home, during the day as she saw our anguish, and at night when she said she would see us in the morning and I broke down telling her we wouldn't be there.

I am thankful for Rebecca, Cora's last PICU nurse. Recebba guided us through the darkest moments of our lives. I wish I could tell you of all the things she did, but, quite simply, I think writing of them, and asking you to read them, would be too much, and take away from the grace and compassion with which Rebecca cared for Cora.

I am thankful for Claire and Larry, who guided us through the process of making arrangements for Cora. We went to Claire and Larry completely overwhelmed, and they helped us with every step. Claire also invited us to come be with Cora as often as we wanted, moments for which I will always be grateful.

I am thankful for the support of my friends. The ones who came over right away, the ones who gave us a little space but were there when we needed them, the ones who brought dinner, the ones who sent cards, the ones who emailed, the ones who contacted us via Facebook, the ones who called, the ones like you.

I am thankful for my parents. I have always been close to them, but since the twins were born, and since we lost Cora, they have been here to help when I didn't even realized I needed their help. I am blessed to have them, and words could never convey exactly how much they mean to me.

I am thankful for my husband. I cannot imagine any part of my life without him. This path we now walk is nothing we ever imagined and all I know is that I could not do it without him.  "Love is a great thing, a great good in every way..."

I am thankful for all of the people who have embraced the sand pictures for Cora ~ family, friends, and strangers. I hope those who do this are as moved by the process as we are by the results.

I am thankful for my three little boys. They have brought smiles, light, and laughter into our home. I love watching them as they grow independently and as they develop their relationships with each other.

I am thankful for Cora.

Ramblings

A long, rambling update since I want Kelli and Meg to practice their editing skills (Bob, you can feel free to get out your red pen too. Heck, anyone is welcome. Just don't tell me about it.):
Physically, I feel pretty good. I have been out of aggressive treatment for about 6 weeks now, and the more distance I get from treatment, the better I feel. I am swimming and slogging, wait, I mean jogging, again. My strength is not where it was at the beginning of the summer, but I am able to at least keep up with my "Lane 4" swimming friends.
I do have some side effects from the treatments - my fingers and toes tingle and/or go numb due to nerve damage and I have some ringing in my ears (so forgive me if I ask you to repeat yourself ~ especially in noisy areas!). But I really cannot complain ~ swimming and jogging feel odd with numb toes, but I am getting used it it.
Where things are at:
Liver tumors: scan in September showed that they are stable and there are no symptoms that indicate they are changing; each month I get a shot in the arse to control the symptoms and that med is also thought to, in some cases, help keep the tumors in check. I will get another scan in November to see how things are looking.
My hope is that at some point my oncologists will say that these tumors are not high grade, they are low grade. This type of low grade tumor is called carcinoid and it can stay stable for long-ish periods of time. My oncologists hint that it could be carcinoid, but I think my diagnosis has gone back and forth so many times, no one wants to jump the gun on revising it again without more data.
Cervical cancer: next Friday (10/26) I will have my cervical biopsy. Once those results are in there are three options (a) no cancer cells (woo hoo!) (b) cancer cells, hysterectomy required (c) cancer cells, but we can take a watch and wait approach. I am eager to get this done and hopefully hear that (a) is the outcome. I would love to have this "off the plate."
[An amusing side story: My very, very serious surgeon and I were discussing my biopsy date and he referred to my "hot pelvis." I had to laugh at that term ~ radioactively hot or otherwise, it amused the seventh grader in me.]
Oh, and I did not have a hysterectomy in the beginning because the cancer was too widespread. They would not have been able to get clear margins and oncologists like to avoid combining radiation and surgery due to the potential complications. 
Emotionally, this has been a painful time. The time from the day Cora was born until the day she died is feeling like a very slow crawl. A year ago our daughter was with us. This coming Saturday night was the night we raced to the ER with her; the date was the 22nd, but for me, I am dreading this Saturday, the third Saturday in October. I keep thinking I just need to make it from then until the 28th, the day of her funeral.

The Wonder

Our house tends to be pretty busy with three little boys. And by pretty busy I really mean nuts. We make a point of doing one-on-one activities with each boy during the week, but we also try to do bigger events on occasion, such as one-on-one trips. One of the things I love about these one-on-one trips is really being able to focus on what one child is doing or saying. This helps me hear the wonder in their voices as they experience new things, and experience that wonder myself.

Last week Rory and I went to Boston for an overnight. Boston is such a walkable city so we meandered from place to place and explored all sorts of little things: jumping on all sidewalk doors (awesome jangly sound), balancing on concrete edging, tracing a path through the 'maze' on manhole covers, and jumping into a huge puddle and then insisting that one's feet were not cold or uncomfortable.

On Thursday night we walked from our hotel to the North End. The path we took brought us by the Holocaust Memorial. As we walked toward the first tower, smoke rose from the floor grate. Rory was startled and a little frightened. We spoke in simple terms about the memorial, and then walked hand-in-hand though each of the six towers. He was respectful during our time at the memorial, and it struck me how much he has matured in the past few months.

Technology

I am fine - I have had a trifecta of issues that have prevented me from writing.

1) A mini-trip to Boston
2) No Internet service at home
3) My computer bit the dust

I hope to be able to do a real post later today. Thanks for all of the messages, I didn't mean to worry anyone!

The Beach

Kelly and I are away on an adults-only vacation right now. The intent was to celebrate my being done with chemo and radiation. We came to a slightly off-season beach town because I have always loved the ocean.

The last time I was at the ocean was during the summer of 2011. I was 7 months pregnant with the twins and down in the sand with Rory and Ky (getting up was not graceful). We had such a good time swimming and building castles in the sand, and it is the first vacation Rory remembers.

Now, I have a beautiful view of the ocean from the hotel room, we have been here for two days, and the walkway that leads to the beach is a two minute walk. But I have yet to step onto the sand. I have not yet written Cora's name in the sand, I thought I wanted to, but I can't. One year ago Cora was alive. It is 2:17am as I type this, and knowing her, it is likely she was also wide awake. I don't want to memorialize my daughter. I want her here.


- Posted using BlogPress from my iPad

Bittersweet

One of my favorite memories from the day Cora and Crosby were born was Kelly standing near me (I had a c-section and we were still in the operating room) holding Cora so I could see her. Then, one of the nurses, Shawn, came over with Crosby and popped him into Kelly's other arm. Kelly's eyes got a little big (or huge) and Shawn said to him, "Get used to it!" We all laughed - and Kelly's pupils returned to their normal size.

Thursday was Crosby's first birthday. He decided to take several steps in a row for the first time, though he has not done so since. He loved a giraffe toy his brothers got for him, and was quite fond of the green frosting on his cupcake (so fond he required a bath!). We had balloons, doting grandparents, and a ridiculous number of pictures were taken.

When we lost Cora, I was worried that all of Crosby's milestones would lack the amount of joy he deserved. His birthday was a bittersweet day. I was overjoyed to celebrate Crosby and all the happiness he has brought us over the past year. But, Cora was also on my mind. In the morning we attended a dedication of a memorial for Cora. In the afternoon I brought a lily to the cemetery. I could tell that several other people had been there that day, which was comforting.

Crosby is such a love and has such a dynamic personality - it is impossible not to be filled with joy when I am with him. Happy, happy first birthday, Crosby!

A Confession

On 9/14, I received the great news that the tumors in my liver were stable during a 9:30AM appointment with Dr. S. I drove from that appointment down to St. Peter's to see Dr. McElrath, my oncology surgeon, with the windows down and the music up. It was a great drive down and I thought my appointment would be a quick check and he would transfer my care back up to my doctors in Glens Falls.

Instead, he came into the room with the news that he was concerned that the radiation and chemotherapy had not done their job. That the cancer in my cervix was not cured. That the treatment which works for the vast majority of patients may not have been effective for me, and that I may need a hysterectomy.

My response: I laughed. I did. Because...seriously what are the chances? Oh wait, it is me. I should have known better. I had three hours of feeling pretty good about the direction things were going with my treatments and then, crash.

Fast forward to today when I saw Dr. McElrath and Duncan again. They did a visual check and they both felt a little better about how things are looking, but have decided that in about four weeks that Dr. M will do a biopsy and those results will then determine if I need surgery. I am hopeful that the surgery is not necessary - both because I want the cervical cancer to be gone, but also because tissue that has been treated with radiation does not heal as well as normal tissue and there can be some very serious side effects to the surgery. As always, I remain hopeful.

In other news, the St. Peter's radiation oncology department now has a new rule, known internally as the Murphy Rule, about checking blood counts before internal radiation treatments. I was also told repeatedly by the staff that they were unlikely to forget me. Again, I had to laugh...as I said to them, I know I was a difficult patient, but unintentionally so.

On Being a Penguin

Today was the Adirondack Half Marathon (13.1 miles). Turns out that jogging while Rory and Kyan rode their bikes around the block was not the best training plan I could have used, but at the end of the day I crossed the finish line!

There was large Team SMAC contingent today. Here is a picture of a bunch of us:

These awesome folks are top row: Larry, me, Liz, Karen, Kate, Shawn; middle row: my Kelly, Amy; bottom row: Heather, Beth, Kelly, and Andrew. Our friend Pat is missing from the photo. Also missing were the two full marathon Team SMAC members ~ Jill and Kevin.

I made the decision to walk since I had not trained and my Kelly and Amy walked with me.  Our first few miles flew by ~ chatting, checking out the beautiful scenery, saying hi to the folks cheering us along the path, being dumbfounded as the full marathon leader flew by us.

We walked through the Word of Life campus, which is a religious camp, and all the kids were out there cheering us on, hollering that we were almost there. Mind you, this was around miles 4-5, so we had quite a trip still ahead of us. But, there was fantastic energy there that helped add a little spring into our step.

Around mile 7 we ran into a woman who had a butterfly resting on her jacket. I pointed it out to her and she said it had been with her for several miles. When Cora passed away a friend told me a story of butterflies being signs from heaven. I couldn't help but think of that today. It is the 23rd and the emotion of losing Cora eleven months ago was weighing heavily on me. Kelly and I saw that butterfly and it helped lift the sadness.

By mile 8, I was starting to get tired when Kelly and I heard the voices of our friends Kevin and Jill (the full marathoners!). They slowed for a few moments to say hi and then continued their awesome run. Around mile 10 I looked up and saw three people walking towards us in Team SMAC shirts. It was my brother, brother-in-law, and sister-in-law. They finished their races, then walked back to walk the rest of the way in with us. It was a great diversion. I think Amy, Kelly, and I were all getting a little tired (we'd been walking for about 3 hours), and even though I told them they were totally obnoxious for coming back, it was nice to have their conversation for the last leg of the trip.

Now...about the penguin. Karen told me that in the Marine Corps marathon the last-place finisher gets a prize of a penguin for the accomplishment of completing. I had a pretty good idea that our trio was at the end of the half marathon group, so I insisted Amy and Kelly walk over the finish mat first, which means I came in last place. The penguin. Another year, I would probably be embarrassed by such a showing. This year, I couldn't be happier. I finished. My friends finished (with amazing times, I might add). Tons of runners asked about Team SMAC when they saw our shirts. Spectators cheered for Team SMAC. For a million reasons I wish Team SMAC never had to exist, but I am always proud to be a member.

I must now be off to attempt to climb the stairs to bed. Or curl up on the landing and sleep there. We'll see how it goes.

Healing

Today marks three weeks from my last radiation treatment. The past five days or so I have felt a marked upswing in my energy level. It is not at 100% yet, but I am also not taking to my bed each afternoon for an hour or more. I also have noted that mentally I am feeling better. I knew that the challenge of the internal radiation treatments was wearing me down, I just don't think I realized quite how down I had become.

Monday I was feeling pretty zippy, so I put on my sneakers and went out for an hour. That felt okay so I decided to go to swim practice for the first time since July. The first 200 yards felt pretty sluggish, but then I started to feel better. Until there was a set of swimming 100 yards (for my non-swimming friends, that is up-back-up-back) and then getting out for push ups. And repeat. That did me in. I hopped out of the pool after half the practice, but was glad to have done a little distance.

During the day I am feeling more like I am getting back into the swing of things with the kids. Case in point: on Tuesday I was working on making lunch for all three kids. My mom was over and had gone up to get Crosby from his nap. While she getting him, I assembled the majority of all three lunches. When she came into the kitchen she went to start all three lunches, not even thinking that I would have done it since I have been zombie-woman of late. We had a pretty good laugh when we realized it was impressive I could make a grilled cheese sandwich. It is little stuff, like making lunches, that is nice to get back into again.

Last Saturday evening some of our dear friends stopped over to introduce us to their two month old son. As we sat and chatted there were several instances where I referenced "the twins" and it felt like a natural part of conversation. No tears (though now I am teary), simply sharing newborn stories with our friends. I can also make it through the little girls' clothing department without a near breakdown. I consider these small signs of healing. Though we are also in the fall, with what would have been her first birthday and what will be the first hell-aversary right around the corner. I feel although I have made these tiny steps of healing, I may take a huge step back.

Stable!

I think the powers that be really wanted me to find out today that the tumors in my liver are stable since I was told via email, in person, and in a letter.

Stable! Yippee!

What does that mean?
It means it is very likely that the tumors in my liver are low-grade tumors called carcinoid tumors. In terms of treatment, I will receive a shot once a month to control the side effects (which are mild) and about every 3 months I will get a scan of some sort (MRI or PET) to see if the tumors are continuing to stay stable.

My first question was: Isn't there something more aggressive we can do now while the tumors are behaving to keep them from misbehaving later? Dr. S had a highly persuasive argument against aggressive action, and honestly, after the summer of radiation I am more than willing to enjoy a little break, let my body recover, and then go from there.

I also saw one of my surgeons today, Dr. McElrath. He removed my stitches from the internal radiation "incident." It is nice to have the discomfort from the stitches gone. I will go back and see both him and Duncan in a few weeks and at that point we'll see how things stand with the cervical cancer side of things.

Dr. McElrath also cleared me to run and swim again. The half marathon is in 9 days...this could be ugly. Do you think anyone will notice if I use those "Wheelie" shoes that were so popular a few years back?

No News

I had my MRI yesterday - 1 hour to get the IV in (4 needle sticks - 2 in the wrists) and 20 minutes for the scan. I also was told I could go to the Saratoga office where they had the capability to use my port. Guess where I am going next time? On the bright side, my neighbor, Rick "King of the Hot Dog" Jarvis was my technologist. I fought the urge to sit on his front stoop last night and wait for his arrival to grill him about what he saw.

Speaking of results, I have received many texts and messages asking me what the scan showed. I won't know for a bit, but once things are sorted out I will post.

Scanxiety

Tomorrow (Tuesday) is my liver MRI. Hence, my scanxiety. The tumors in my liver have been untreated over the summer and the results of the MRI will give us a better idea of their nature. If they are stable, then it is likely they are lower-grade than the pathologist at Dana Farber thought they were. If they have grown, then the pathology was correct and the tumors are high-grade.

[Quick catch-up: Two different pathologists have looked at the liver tissue samples, but they did not agree on the grade (1 (low), 2, or 3 (high). My first four rounds of chemo were given based on the assumption of high-grade tumors in my liver. But the tumors didn't respond. This could mean the tumors are not responsive to chemotherapy or (fingers crossed here) the tumors are of a lower grade (which tend not to respond to chemo).]

I also have scanxiety because the MRI involves an IV and you all know how my veins cooperate with such procedures. I did talk to the tech about using my port, and although that is a no-go, he did give me the okay to continue with fluids after the 6 hour cut off for solid foods, and I think that will help.

Oh, and I would love to take credit for the term scanxiety, but I must give credit to my friend Janine for that one. Janine and I both lost our young daughters and now are both fighting cancer. It is odd how the most horrible things in life can bring some of the greatest people into your life.

It Goes Too Fast

Expectant parents and new parents get a lot of (unsolicited) advice, at least I know Kelly and I did. One of the most common refrains was to "Enjoy every moment, it goes by too fast." For me, that advice is compounded because my time with my children will be much shorter than it should be, than I want it to be.

Here is the kicker that all parents know...parenting is hard. It is hard to enjoy every moment as one child is trying to go head first down the stair from the family room to the porch while another is using super whiny voice to ask for more juice (without a please, I might add), and the third is singing poopie poopie pee pee at the top of his lungs. It is at such moments I look at the clock and calculate the hours until bedtime.

But then, every now and then, in the midst of the chaos, something happens. Kyan stops his frantic dancing and bends down to give Crosby a kiss and a toy while calling him "little buddy;" Rory looks at Kelly and says, without any prompting, thanks for making me dinner, daddy; Crosby lights up when I walk into the room. Those moments...those are the ones I savor. Enjoying every moment is too hard, too unrealistic, too impossible to obtain. So I keep my eyes open for those little glimmers, little moments that remind me how sweet parenting can be, even when there are still 10 hours and 43 minutes until bedtime...

A Small Amount of Normal

The good news: My internal radiation treatments are done.

The less-than-stellar news: My last one did not go off without a hitch on Wednesday. When the device was removed, I received a deep cut which required stitches (think episiotomy) and lost enough blood that I required transfusions for blood and platelets.

The good news: Thank goodness this happened on my last one, otherwise I don't know what would have been done.

The less-than-stellar news: I was hoping for a couple of weeks of recovery before my scan on 9/11. I guess I still get that, but this version is much more painful and my energy level is ridiculously low.

Here is the thing: during this whole internal radiation process I have felt like an idiot. I am the patient who cannot handle the device. I am the patient where things never go the same way twice. I am the patient who needs surgery and transfusions after something that should cause a little spotting. It just feels like too much. I just want some small thing during this process to be normal. To be so ordinary it doesn't require my husband to change his work schedule and my mom to discuss blood levels with my nurses and my children not to wonder where I have gone and why when I return I can't play with them or pick them up or have them sit in my lap.

LOVE or LIFE or DEATH or HEAVEN

One of the hardest things for me about losing a child is feeling that no one really understands what it is like. Even my friends who have lost children. They didn't lose Cora. And I didn't lose their children. We now all have this horrible thread woven into our lives, but each thread is different. Then there are those who are so near and dear to us, who have been by our sides each and every day, but who can't fully understand.

I am not an avid reader of other blogs, but there are a few out there that when I have a few moments I like to read. "Like" feels like an odd choice of word given what I am about to write about, but I can't find another word that feels more appropriate. A blog I read is by a mother who lost her son, a seventh grader, a few weeks before we lost Cora. I "like" her blog because she is brutally honest and sweet and angry and faithful and doesn't gloss over tough topics. Today she wrote: "I was an ardent meeting-goer in my previous life, but at this point there is no way I'm going to get all up in arms about the minutiae of church business or youth sports, or whatever. I mean, seriously, if it's not about LOVE or LIFE or DEATH or HEAVEN, it seems like bull to me at this point."

In the words of another blogger I read, Sister On.

Cora's Sand Pictures

Last Monday a local doctor, Matthew Dunn, spoke at a local outdoor business about his multi-day ultrathons. My mom was driving me home from the hospital and even though I was exhausted and on some pretty serious pain meds, I wanted to go meet him. For those of you who have seen Cora's sand pictures, you may recall one done in Nepal and that her story was shared by the writer with a refugee who then prayed for her. The writer was Matthew Dunn. So I went, heard his great stories, and then got to meet him and thank him. It was only a few moments, but they were very powerful to me.

The Friday before my thwarted swim race, I hopped onto Facebook where one of my college housemates, Bridget, had posted a picture of Cora's name in the sand. It was at the starting point of the race with the note that she had gone down to the beach to do it, but someone else already had done it. Months ago I asked my friend David for the address of the beach so I could write her name there. Turns out he wrote it for me since I couldn't and Bridget took a picture. My people...they are breathtaking in their acts of kindness and remembrance.

Cora's first sand picture was sent to us on November 2 by our recklessly thoughtful friend Meg. A few weeks back she had the idea of making a map showing where Cora's sand pictures have been drawn around the world (there have been over 200). The map is a little clunky, but I think it is amazing to see how her pictures have spread around the world. I can't even get my head around the fact that we lost her 10 months ago today.


View Sand Pictures in a larger map

Plablah...

Thursday was a bust.

I went in for treatment, was put under and then woke up in excruciating pain once again. They had to pull the device within minutes, so no treatment. This time they did not give me the drug to make the memory hazy, which is good since I could clearly describe the pain to Duncan. Previously I used the word "pinching" to describe the pain, which upon reflection does sound very superficial and like I am the world's biggest wimp. The description I gave him this time was like an animal paw trap ~ relentless in its pain and equally so when I tried to move or they tried to move me. That helped him with some perspective, I think.

The memory is not so good because I (a) shit, that hurt and (b) I was begging them to help me - over and over. I think I may actually need to pay for physical therapy for Marlene and Brooke, two of the amazing techs, because I squeezed their hands so hard for so long.

My next treatment will be sometime...soon. Duncan is working with one of the gyn surgical oncologists down at St. Peter's to schedule my last three treatments. Time is a factor since the ideal is to keep hitting the cancer cells with radiation before they have a chance to rebuild. My last successful treatment was on Monday, so Duncan is hoping for Tuesday or Wednesday, but it all depends on all the schedules meshing.

A lot of folks have emailed or messaged asking me why I cannot simply receive general anesthesia for this procedure. The procedure start to finish lasts about 4 hours. For about 10 minutes of that time I am isolated while receiving the radiation treatment and I cannot be unattended and under general anesthesia. These doctors and their details...
[Though I get the image of a doctor in the room with me in one of those big, white suits you see in movies. That would be exciting. And freaky.]

We are pressing on around here. Crosby is cutting about 5 teeth and has this funny little crawl that is amazingly fast. Kyan is in the midst of potty training and thinks he has many more important things to do than actually use the potty, which is making the process very...damp. Rory has suddenly become this bigger, much more independent boy, but thankfully still is willing to snuggle at night.
Kelly constantly burns the candle at both ends and refuses to listen to me about going to bed. I am hanging in there ~ the side effects of radiation are much worse than the side effects of chemo for me, but I am hopeful that once I finally wrap up radiation, I will start to feel better again.

Why, Hello

Friday I went to St. Peter's Hospital (not my 'usual' hospital) to attempt the internal radiation treatment again (this is the one that caused such severe pain the last time). It was painful, but I made it through. The doctors used a regional block and morphine which took the edge off. I still cried, but at least I could get through it.

For a fleeting moment (I think it was the morphine) - I thought I would be able to go do my swim on Saturday, but no such luck. I started having pain Friday night that increased through the day on Saturday and into Sunday morning. I ended up in the ER needing to have the sleeve (part of the internal radiation device) removed because it was causing so much pain. My ER doc came in and said, "I have never even seen one before. I am not sure how to remove it." My response: "It looks like a golf tee. Just pull it out."

That was a really dumb thing for me to say. In the end Chris, one of my local radiation oncologists (and I should note, the one who always gets me at my worst times...), came in to remove it.

So then Monday I was scheduled for another internal radiation treatment at St. Peter's. This time my mom came with me because Kelly has this job thing...
Duncan (St. Peter's radiation oncologist) agreed that no part of the device would be left in this time and also planned to use a slightly different pain control plan.

You probably already know this isn't going to go well, eh?

The docs use anesthesia to put the device in, but it is short lasting. Most patients can then handle the pain with some meds. Something about me makes that not the case - maybe it is my anatomy or some of the side effects from the treatments I have already received, but it causes pain in the 8-9 range on the 0-10 scale for me.
So I woke up in severe pain which lasted almost the full time (about 2 hours). My poor mom - I had her tracking the time as I muttered under my breath "just xx minutes longer" and then asked her just to talk...anything to help distract me because that deep breathing stuff was so not working.

But, I made it through another one. Two down, three to go. On Thursday Duncan has a new pain control plan to try. I am optimistic that it will work, but even if it doesn't this treatment has to get done and after making it through Monday, I know I can do it again. It just may not be very pretty or pleasant.


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Anxiety and Disappointment

On Friday I head back to the hospital for another attempt at the internal radiation that is needed to obliterate the cervical cancer. After the last attempt, my anxiety for Friday is pretty much through the roof. I am hopeful the pain will be manageable, but also very aware that I may end up exactly where I was two weeks ago.

I am disappointed because between chemotherapy on Thursday and my surgery on Friday it is highly unlikely that I will be able to do my swim up in Mirror Lake on Saturday. The chemo usually hits me hardest after two days, and toss in the anesthesia from Friday, and it is highly unlikely I will be in any shape to do an open water swim. Not swimming is disappointing, but equally disappointing is not heading up with the folks I usually swim with and also missing the opportunity to swim with and see one of my undergraduate classmates whom I haven't seen since graduation (yikes!).

One Decade

Ten years ago today Kelly and I were married. Kelly wanted a church wedding. In the summer, so we could have outdoor pictures. I wanted Vegas. With Elvis. Kelly won.

Kelly and I have known each other for a long time...since I was in third grade and he was in fifth. We went to different schools, but attended the same church youth group. When we were in high school and college we ended up working at the same restaurant together (where he swears he was always honest about the tips and any discrepancies should be taken up with Peter Mead...). We became friends over movie nights, youth group events, work, the Wing Street gyroscope, trips back and forth to each other's colleges, and dozens of other events.

And then we weren't friends. We call it the hiatus. Then one Christmas Eve a small group of former youth group members were talking after church - all greeting each other with hugs and smiles. But when I saw Kelly, I held out my hand for a handshake and that was it. It was nice and awkward.

So awkward that a few days after Christmas I called his number and left a message on his machine to apologize. He called back, and ten months later we were engaged to be married.

I loved our church wedding. I was worried I was going to cry, but I took my dad's arm and looked at Kelly and all of our family and friends in the church and felt an overwhelming sense of calm and joy. I knew, without a doubt, I was exactly where I was supposed to be.

I am extraordinarily blessed with my marriage and however long I have left, I am thankful I get to spend that time with Kelly.

Knocked for a Loop

The past week has been a rough one. After last Wednesday, I continued to have some pretty serious discomfort - discomfort that led to me having another surgery yesterday to remove the radiation sleeve. The discomfort also led me to use, for the first time since I have been diagnosed, some (to me) strong pain meds. I am not a fan of pain meds. Perhaps I should say, I am not a fan of how pain meds make my head feel cloudy. I am a fan of how they diminish the pain.

As a consequence of feeling crappy both physically and mentally, I didn't really have the weekend I had planned. I missed out on several things I wanted to do, plus I wanted to spend more time with my kids, since three days last week I was at all-day medical stuff.

So I was wallowing about fucking cancer and treatment and how I couldn't keep up with my life. Until last week, every "side effect" was expected - I knew I would lose a day or two after my big chemo treatments, I knew radiation would cause fatigue, I did not expect to be knocked on my ass by what was intended to be a routine part of treatment.

And then I thought about my weekend. On Friday night I still got to go out with my girlfriends-I just got a ride and drank water, but I still got to catch up with them. Then Saturday I was able to go to the start and finish of the Brad Moynihan Golf Tournament-where I met some great folks, ran into friends and family members, and the older boys had a grand time checking out the golf carts and catching golf balls tourney players gave them. Sunday was the annual Master's swim around Clay Island, where my in-laws have a home. I wasn't up to the swim, but we had a great group come up and it was a perfect afternoon to hang out on the lake.

I really needed to remember that even though things don't always go as planned, there is still ample good to be found.

Well, That Sucked

Have you seen those medical scenes from a patient's perspective that flash on some small part of what is happening, then the screen goes black, then there is another flash of activity? That was my morning.

I went to have my internal radiation today, the first part which is done in day surgery to insert the "device" needed for the treatment. I knew it would be uncomfortable, but my doctor and nurse talked me through the process and I felt confident going in that a little discomfort was worth the expected outcome.

Fast forward to me in the recovery room. I remember very little other than writhing in pain. I cannot even tell you exactly the pain I was in - I know I was crying and I know that the anesthesiologists and nurses were trying to keep me calm and get my pain under control. I remember hearing bits and pieces of conversations and I know that when the decision was made to remove the device I bit down on my blanket so I wouldn't scream.

I have no idea how difficult I was to deal with during this ordeal. I imagine very, which mortifies me. Isn't that ridiculous? I sit here tonight concerned about how my treatment will move forward from this, but equally concerned that I was the crazed loon in recovery bay 7.

Insurance

After Cora died, our insurance company denied the claims for the attempts to save her life. Feel free to use your long list of curse words now. I did. I also had lots of tears and anger because how could "they" be so cruel.

I won't go into the nitty-gritty, tedious details, but in time the insurance company did cover the bills. The whole process has made me exceptionally skittish about insurance companies, and I am fairly certain earned the Murphy family file a red sticker at the insurance company.

I am fortunate that the cancer center I receive treatment at is quite proactive when it comes to dealing with insurance companies. One drug I take every time I have chemo is called Emend. The purpose of Emend is to keep my head out of a bucket and keep me living my life, even while undergoing treatment. My insurance did not deem it necessary and denied the pre-approval. The cancer center pushed back and the Emend was approved.

Emend is a pack of 3 pills. It would cost me almost $500 without insurance. Currently I use one Emend pack each week.

Check out my IV bag of chemo drugs (the one with the orange warning label on it saying to use precautions when touching the bag...makes me feel good as it pumps through my veins!). I call this my $10,000 bag because that is what the cost would be without insurance. $10,000. So far, I have had eight of these treatments (and that doesn't count the four $6,000 treatments I had or the pricey shots I received to keep my white cell count up or the shots I receive to try to control the side-effects of the neuroendocrine cancer).



I don't really know where I am going with this. I am grateful to have insurance through my husband's company - even though I do worry, based on our experience that the rug may be pulled out from under us (even though I know it is not legal). I am grateful to be part of a cancer center that realizes the drugs to maintain normalcy are almost as important as the drugs needed to treat the cancer. I worry for others - patients who are not able to be their own advocates, patients who can't access the drugs they need because of cost, patients who don't have a proactive cancer center behind them.

Accidental Inspiration

This past weekend was my twentieth high school reunion. It was great fun, though a few people needed the evil eye for not aging appropriately (oh, you know who you are...). Many of the people in my class have been extraordinarily supportive over the past year, even though I hadn't seen them in person very often, if at all, so it was lovely to see them.

It was also lovely to be seen. I can write, I can post pictures on Facebook, I can tell people I am tolerating treatment, but I think seeing me in person helps people realize that I still am me.

The one thing I heard a lot this weekend, and have heard a lot since I started this blog, is how inspiring I am. I never know what to say to such a comment. Usually it is "Um, thank you," because it has never been my intent to be inspiring (unless I am trying to inspire my family to actually make it out the door on time....then I am a fountain of inspiration). Some days I am pleased to be upright and mobile, so it is difficult for me to even consider myself inspiring on those days.

I think of the people I find inspiring and almost all of them seem to be people who didn't aim to be inspiring. Rather they inspired me simply by living their lives in the best way possible - during both good and bad circumstances.

I read this quotation by a friend's father, and I think this is a large part of how people I find inspirational act:

"...there is the way things should be, and there is the way things are. Just go out there and do the best you can."

What's Up

A week of external radiation is now under my belt. One-sixth of the way through. Radiation isn't difficult (yet), but I am not nuts about going to the cancer center every day. The good thing is that the radiation techs market it as "30 minutes from the time you get out of your car until you get back in it."

Except on Mondays, when I also have an appointment with the radiation oncologist.
And Fridays, when I also have bloodwork, chemo, and an appointment with Dr. S.
Oh, and Wednesdays starting two weeks when I need to start internal radiation and will be there from 6:30-noonish.
But the marketing holds for Tuesdays and Thursdays!

Several people have emailed or asked me in person about why I have fewer blog posts and why they are a bit more factual of late. There is no good answer. I have things I want to write, but haven't really been able to write as I want to write them. Some nights I write and it doesn't seem to go anywhere, or where I want it to go, so it is not made public.

And some nights, like tonight, are at the end of a long, emotional day. Nights where I am drained and know that writing much beyond the basics would be an exercise in futility.

So, I am still here. Still writing. Still in treatment. Still wrangling a busy, crazy life.






- Posted using BlogPress from my iPad

John Todd's Letter

Two of "my" ministers have recently given moving sermons about the architecture of heaven. These sermons deeply resonated with me as I think of and pray for Cora, and as I think what awaits me.

I also have several friends who have recently lost one or both parents, and hope that this excerpt from the sermons helps to provide some small comfort to them. 

[Thank you to John Barclay and David Lukov]

Let me share with you a wonderful story from the theologian John Claypool.   He tells the story of a child born in 1800 in Rutland, Vermont, named John Todd, who would go on to become a prominent Congregational preacher in his day.  When he was six years old, his mother became insane and his father died.  He was sent to live with an aunt who had never married and had no children and whom he had never seen before.  The aunt turned out to be a very tender and loving person.  He grew up well in her home.  She put him through college and saw him into young manhood.

Some years after he was grown, John got word that his aunt was seriously ill and was, in fact, at the end of her life, and that as warm and tender and loving as he had been to John, she seemed petrified and terrorized at the prospect of dying. So John Todd, the grown man, wrote her this letter:

“It is now 35 years since I, a little boy of six, was left alone in the world.  I will never forget the day I made the long journey to your house.  I was disappointed that you sent your hired man, Caesar, to come and fetch me.  I remember my tears and anxiety as I clung on to Caesar’s back as we started for my new home.  I became more frightened as we rode along.  ‘Do you think she will have gone to bed when we get there’ I asked Caesar.  ‘Oh no,’ he said.  ‘When we get out of these here woods, you’re going to be able to see her candle shining in the window.’  Sure enough, we rode out into the clearing, and there was your candle, and there you were waiting at the door, and there were your arms lifting me off my horse, and there was a fire you built for me in the fireplace, and there was a good warm supper, and there you were taking me to bed and hearing my prayers, and not leaving me alone until I had fallen off to sleep.”

“I’m reminding you of these things, now, dear Aunt, because soon God will send for you and take you to your new home.  I want you not to fear that summons.  I want you not to fear the strange journey or even dark messenger of death because I am sure at the end of the road you will find love and welcome.  You will find that you will be as safe as here, safer indeed, in God’s love and care.  Because surely, dear Aunt, God can be trusted to be as kind to you as you were to me.  Love, John.”