Doing Everything Right

I am a total goodie-two-shoes. I always made curfew (a few times I pulled the car in the garage right on time, but I made it), I rarely skipped college classes, and pay my taxes ~ even those nasty self-employment taxes ~ without fail. I try to do everything "right." Until October that seemed to work out pretty well.

When I was first pregnant with Rory, I went out and got one of those adorable crib sets. The ones with a bumper and a blanket ~ it was so cute with all of these little animals on it. And then I returned it because I learned bumpers at any age were not safe. I remember everyone asked me about the nursery and were shocked when I said there was no decor. Just a crib with a sheet.

By the time Cora and Crosby came along, the safety things were routine. Nothing in the cribs, kiddos on their backs to sleep, pacis when they were sleeping ~ the whole nine yards. We did everything "right" to prevent SIDS. But, Cora died and her death has fallen into that horrifying classification of SIDS. Her heart stopped beating while I was holding her in my arms ~ where else could she have been safer? How else could I have done anything more right?

Without a doubt, losing Cora has affected the way I have responded to my cancer diagnosis. A few days ago on Facebook, I asked people who were putting off doctor visits to schedule them. But the thing is, I wasn't behind on my appointments. Hell, for the past 5 years I was in my OBs office at least once a month ~ probably more, between fertitily treatments and my pregnancies. I had every test I was scheduled to have, including my pap test, but I still ended up with advanced cervical cancer.  Plus, as a bonus I have carcinoid tumors. I mean, what is that...a terminal gift for, once again, doing the right thing?

An expected conclusion might be to "screw doing the right thing," but anyone who knows me knows that won't happen. But, maybe I'll wander off the path a little more.

And onto Plan D

Plan A: surgery; plan a foiled because the cancer was too widespread for surgery to be successful
Plan B: external and internal radiation with low-dose chemo; plan b pushed aside because of cancerous tumors in the liver
Plan C: chemotherapy; plan c tossed because the cancer in my liver is different than the cancer in my cervix
Plan D: ??

There is a small twinge of hope around Murphyville. The tumors in my liver, while not good, may not be as bad as metastasized cervical cancer. This means instead of months, I may have years. YEARS! How many is a question (not as many as I want), and if that will be the case is also a question, but it is possible.

I am hopeful, but also skeptical. In less than a month we have already been through three treatment plans and each time there has been a drastic change. This is no one's fault-the doctors get an answer from one test that leads to another that leads to a huge change. I hope this next round of tests shows that the carcinoid tumors are manageable for a few years, but the location of the primary tumor needs to be found, and the fact that I have eight known tumors in my liver as well as some slight bone activity makes me nervous...that is a lot of tumor activity. Plus, I still need to beat the cervical cancer.

So, for now I am staying steady. I am staying off the roller coaster and waiting for all the pieces to come together for Plan D.

Skidding Sideways

Game changing day.

Dr. S. called this afternoon to tell me that the biopsy of my liver showed something "interesting." This is not something you want to hear about your liver biopsy. The interesting thing is that the cancer in my liver is not metastasized cervical cancer, rather metastatic carcinoid tumors. In other words, I have two different cancers in my body. Once an overachiever, always an overachiever.

Because it is easy, I am going to go for the Q&A style to share with you what little I know.

Will you start chemotherapy tomorrow?
No; the drug cocktail was designed for metastasized cervical cancer.

How will this be treated?
I will actually receive separate treatments for each of the cancers. What those treatments will be, and when they will start is up in the air. I should be able to receive all my treatments at Glens Falls (my local hospital).  My doctors are now looking into a different drug cocktail to treat the cancer in the liver and radiation and low-dose chemo for the cancer in the cervix, but that is not set in stone.

That being said, I will need to go to Dana Farber in Boston to see a specialist there. These types of tumors are uncommon (again, overachiever) and so I will see a specialist who focuses on endocrine oncology. I don't know when I am going. I need to first do some testing here, including a 3-day octreoscan. So, it will be a few days.

What does this mean for survival rates?
We don't really know yet. The carcinoid tumors are not curable, but they are treatable. There are a lot of open questions that need to be answered before any estimate is made.

Edited to add a new question:
What is your staging?
The cervical cancer is 2B, but the liver cancer is still 4. Somewhere in my body is the primary tumor site for what is going on in the liver. One of the purposes of that 3-day scan is to find the primary tumor. I have no idea what will be done when they find that site to treat that tumor, or if it will be treated along with what is going on in the liver.


How are you?
I am pleading the fifth. It changes from moment to moment, but all in all I am remaining hopeful and going to continue to savor each day.

Mommy! Poop! Tub!

Parenting can be a challenging job. It becomes about a million times harder when you desperately want to fill your children's minds with as many happy moments as possible.Turns out that parenting, the nitty, gritty, daily parts of parenting don't get put on hold at times like these. Tantrums are still thrown, defiant NOs are still proclaimed, and calling out in the middle of the night still happens. Who knew than an infant and two little boys wouldn't suddenly realize their mommy wants every moment to be perfect, so she knows the few memories they have will be glowing ~ all toy cars, pacis, and zoo animals?

Tonight I was home with Kyan and Crosby while Kelly brought Rory to hockey. Kyan was playing in the tub while I was walking around with Crosby when suddenly I heard him scream: Mommy! Poop! Tub! I ran in to find that he had pooped in the tub and was holding some of it in his hand while screaming. So, I popped Crosby into his crib, talked Ky into putting down the poop, scurried him over to the shower, scoured the tub and toys, calmed down Crosby as he fussed in his crib, extracted Ky from the shower (after several requests for 1 more minute!), got him dressed, picked up Crosby, and then hung out investigating the backpack of "treasures" Ky got from the hotel (for the curious, a map, crayons, a hacky sack, a Twizzler, and a small magnifier ~ a little child's dream backpack).

A far cry from an ideal evening, but a typical one. And one that is in the spirit of what I hope will be remembered. Not perfect, but we yelped, laughed, and explored ~ which seems to sum up a lot of our times together.

Oh, and please share this tub story with Ky when he is old enough to laugh, but not so young he is mortified.

Who needs a bucket list?

I will not be skydiving anytime soon. Or base jumping. Or jetting off to Italy. When I was told of the expected outcome of my cancer I thought about what I really wanted to do. Today, I went on my "big" trip - it was to the Bronx Zoo. I wanted to come here because Rory has wanted to visit a zoo for months and I wanted to do that with him. So, we did and it was great. Rory saw the giraffes and penguins like he wanted to, and thought the sea lions were really cool. Kyan also had fun...even when he thought one of the roaming peacocks was going to eat him (seriously, adorable). Crosby enjoyed his long nap and smiling at people in the cafe. Anyhow, the point is that I don't have a "bucket list." I have had many great adventures, but I don't need to have another that pulls me far from home. I want to write Cora's name in the sand, I want to go with Cory to breakfast at Suttons, I want to talk with Kelli-girl for so long that Kelly thinks I forgot my way home, I want a date-night with Kelly, I want a homemade dinner with my mom and dad, I want to swim around my in-laws island home, I want to play Bunco and neither win nor lose, I want to lay on the floor while Crosby plays, I want to play cars with Kyan, and I want to play hide and seek with Rory. I simply want to keep living my very blessed life.

I look good!

Here is the thing ~ I don't look sick. In fact, I look pretty good. I was trying to upload a photo to show you, but my husband's iPad is too complex for me. Because I look so good, it is hard for others ~ and me ~ to accept how aggressive my cancer is. I was just swimming and my times were pretty close to my best times. I pick up and carry the kids all the time. I am going, most of the time. How can I be so sick? The reality is starting to reveal itself to me in unseen ways. I do tire easily. I have some constant pain, which I dull with Motrin. My appetite has decreased and my digestive system is nutty-I think my stomach may actually be twisted. Okay, maybe not. On Tuesday I start chemotherapy. 4 hours of poison dripping into my veins. Then more Wednesday, and Thursday, and a shot for luck on Friday. I know that will cause rapid physical changes. I am dreading that. Because now, for some moments, I forget. I fear the drastic physical changes will change that.

Mark 9:24

It was four months ago today that Cora died. When we were holding her, after she was taken off life support, was the moment of my strongest faith. I knew at that moment that Cora was in heaven. That there was a God. There was not an ounce of doubt. Since that night, that confidence has wavered.  I often think of the end of Mark 9:24 "I do believe; help my unbelief."

Now, as I face my own death, I do wonder: What if I am wrong? What if I die, and that is the end? It seems so pointless. But then I think about the soul ~ and I think the soul is the best parts of a person. And those parts, those parts will live on. They will live on in my children, they will live on in stories people tell to remember me, they will live on in the memories of those who love me.

I do believe, but thinking of this helps me during my moments of unbelief.

Reality

Today Kelly and I met with my oncologist, Dr. Stoutenburg. That is a long name to type. How about we call him Dr. S?

Dr. S. happens to be awesome. A great addition to Team SMAC. He spent a long time with us, and then after he met with us, spent a long time talking with my doctor up at Dartmouth. I will start chemo next week. Because I am young, they are going for a very toxic chemo combination. Even with how toxic this combination is, it will really "only" be palliative.

Cold, Hard, Reality: Patients where I am now have an average life expectancy of about 9.5 months.

I can hear some of you already...fight, fight, fight - you can do this, you can beat the odds. And believe me, I am going to try with everything I have. But, I also am accepting of reality. I have several months left. I want them to be as great as possible. I am not going to chase chemo until it destroys me. I am not going to spend hours on wishful thinking therapies. I am not going to deny what is going on inside me. I AM going to spend hours with my children, my husband, my family, and my friends. I AM going to savor everything I can for as long as I can.  Kelly and I will make plans for the children and for him, we will do our best to prepare Rory and Kyan for losing me, and I will have time to write them letters, make photo books, and perhaps even a video for all the boys to have when they are older.

I do have a favor to ask of you all. I would like the kids to know as much about me as possible/as they want to know. I want to collect a book of stories for them ~ stories about me from others. So, when you have time, I would love for you to write down something about you and me ~ it can be as long or short as you like, funny or serious, it is your call. You can send it to me via email (suzanne.murphy@gmail.com) or Kelly (kjmurphy711@gmail.com), or you can mail it to us (48 Farr Lane; Queensbury, NY 12804).

Oh, and I know you all want to know...yes, I will be losing my hair. I am thinking bandanna, not wig.

Crap Veins

Today was my liver biopsy down at St. Peter's. I was very apprehensive because the radiologist at Glens Falls refused to do it because he deemed it "too difficult to biopsy." I was worried that St. Peter's wouldn't be able to do it, or may not get a good sample, which would mean more delays in starting treatment.

Fortunately, the team (5 men...what are the chances of that? It was 1 out of 230, based on the staffing stats provided to me by the guys. See, math IS everywhere.) was terrific. They had a good line, no major blood vessels blocking the path, and were able to get several samples. The hardest part of the whole thing was the 1.5 hours it took to get my IV line in and 3 tubes of blood drawn. Thank you, crap veins.

I have to say, since word got out about my staging, I have received so many messages, calls, and visits to help pull me up. I can't thank everyone enough. I asked for help being positive, and it worked...I can feel the tide turning, ever so slowly, away from the overwhelming sadness.

My dear friend Meg came up with the acronym SMAC (Suzanne Murphy Attacks Cancer). I like it. Perhaps a little too much. Who wants a t-shirt?

Old Testament Justice

[Another post from a while back that I am reposting now. I can already hear some of your comments. Know that this was a fleeting thought, an idea, not something I torment myself with daily.]

The Old Testament of the Bible is rife with stories of harsh, unforgiving acts of judgement. Those of you who know me, know that I do not read the Bible literally, but sometimes...

Today my OB called me to confirm what we already knew, I have cervical cancer. As he told me the boys were running around and I could barely hear him, but I started crying. Not because I had cancer, but because my first thought was "This is just." This is the least of what I deserve for not being able to save my own daughter. For failing her. For not keeping her safe. For not protecting her.

This disease. This cancer. This is Old Testament justice.

Lurching

Today, on the way home from pony rides and ice cream with Rory and Kyan, my mother called me with the news the radiologist at St. Peters thought the "tumors" were just clusters of blood vessels. My liver biopsy was cancelled. My cancer isn't stage 4B.

Let me spoil the surprise, none of that is actually the case.

The radiologist looked at an MRI, which showed blobs of unknown origin on my liver, but that were not presenting as cancer blobs present. So he decided - without talking to any of my other doctors (there are at least 4 more who are actively involved and up to date) - that the biopsy was not needed and it was all for nothing.

As soon as I got home I called the radiology department and asked if he had seen my PET CT scan (a scan in which cancerous parts of the body "light up"). The response: You had a PET scan?
My thought: Are you fucking kidding me?  (Drink!)
My actual response: Yes, and my liver lit up like a Christmas tree. I NEED that liver biopsy tomorrow because they won't start my chemo without it and I am NOT waiting another week.

Guess what? I am having my liver biopsy done tomorrow.

Moral of the story: Know what is going on with your healthcare and stand up for what you know you need. I imagine a number of patients would have just let this slide. They may have even celebrated the good news. Believe me, I would have loved to celebrate, but I knew that wasn't the case.

Had I Known

[Note: I wrote this entry about 10 days ago, when I knew I had cancer, but didn't know it was stage 4B. I reread it today, and wouldn't change a word.]

In The Year of Magical Thinking by Joan Didion, she often references the amount of time her husband had left to live as she recounts the days and hours before his death. "25 hours until he died...would he have...?"

Reading this made me think about if I knew Cora was going to die, how would I have acted? But, of course, I had no idea she was going to die, and as a result of that, the first time her heart stopped beating was when she was in my arms. I was avoiding doing the dishes, so I could hold her a little longer since she was sleeping so peacefully on my shoulder. Because I didn't know what was about to happen, she didn't sense any sadness, fear, despair, or desperation. I hope that she felt safe, loved, and content.

Being Positive

Many people have told me to stay positive, that there is always hope. And I am trying to do that, but it is so difficult. I think after losing Cora I realized that someone can do everything "right" and horrible, cruel things still happen.

I am heartbroken because I fear the boys will grow up without a mother. And they are so young they won't remember me, or just have small tidbits of memory. They are my whole world, and I may barely be a part of theirs. I am sad that Kelly could go through another horrible loss, but this time he won't have me to walk with him through it. I can't stand the thought of my parents having to bear the loss of their daughter. It is all just so much pain.

Right now, I am struggling to stay positive, to have hope, to be optimistic about the future.
I was talking to some friends last night and was talking about this and one of them said, "Then let us do that for you. Let us find the positive for you." So I need your help, help to find the positive again. Help to have hope that this will respond to treatment. Help to have hope that if it doesn't, then I can find the joy in the days rather than the sorrow.

4B

We'll do this like a little Q&A using the things people have asked me today. Might be the best way to organize my thoughts and answers:

1) What exactly is it that you have?
Cervical cancer, stage 4B - cancer in both the cervix and liver; each time I saw a new doctor my staging got worse...now there is no place to go. Fancy name: endocervical adenocarcinoma

2) How will it be treated?
They will treat the cancer in the liver using chemotherapy ~ that will also affect the cancer in the cervix. After chemotherapy I may still require radiation for the cervix and/or surgery for the liver.

3) Why can't they just operate?
The cancer is widespread enough that they cannot get clear margins. Plus, this specific cancer tends to "lurk" - so even if they took half my liver, in 3 months the other half could be loaded with tumors. Chemo is the best offense.

4) What is your prognosis?
It sucks. "Cure" is not really a word used in reference to where I am at, but it can be treated. A great deal hinges on how the cancer reacts to the chemo and how my body tolerates everything. So, if you are in a praying mood ~ opt for a strong body and wimpy cancer cells.

5) Are you getting a second opinion?
Yes, from the cancer center at Dartmouth-Hitchcock. A family friend is the director there and once my final results are in from some tests and the chemo plan is set, they will review and we'll go from there.

6) How are you?
Um, really?
Sad, weepy, angry, frustrated, royally pissed off, desperate to start doing something proactive, terrified, scared

7) How is Kelly?
See above.