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.”

Firsts and Lasts

Our July 4th was busy, lovely, and traditional.

We went to a family picnic at my parents' home filled with 'cousins' (my dad's aunt, cousin, and his cousin's children and grandchildren: I say aunt and cousins when talking about them....if you care to tell us how we are second cousins twice removed divided by three, feel free!). We had a cookout and the little kids played and swam together.

We then went up to Kelly's family home on Clay Island, Lake George. It was a beautiful evening which marked Crosby's first boat ride and his first trip to the island. Rory and I used a net to catch our first fish. (Kelly will argue it was barely a fish, but I say that just because it was the length of my pinky nail does not matter...it was a fish). Kyan rode in the kayak while Kelly followed me as a swam around the island - unplanned, so it was done the old fashioned-way, sans goggles. The bigger boys toasted their first marshmallows in the campfire, and then we watched the Bolton fireworks from the dock - during which the phase "big boomer" was used a great deal!

It was a great day, filled with many firsts for the all three boys.

For me, a fleeting thought on such holidays-and sometimes just on random days-given my prognosis, is that this could be my last July 4. You know I hope and pray this is not the case, but if it is, it was a near perfect day.


- Posted using BlogPress from my iPad

Saying Yes

I am fortunate that my boys are so young. They don't know, and certainly are not at an age where they need to be told, the seriousness of my illness. They know I go to a lot of appointments at the hospital, but they are never scared or nervous about me going there. I go, I come back, we carry on.

The one area that has changed is that I say 'yes' much more often when they ask me to do things. This morning I had about a half hour and I was all set to go weed. But then Rory and Ky (and eventually Crosby) wanted to read stories, so we did. Then the bigger boys wanted me to jump on the backyard trampoline, so we did (and, no, there is no photographic evidence of that).

Today was filled with small yeses, but I think those matter a great deal. Are my front beds weeded? Nope. Is the laundry put away? Not yet. But, we had fun checking out the pit of a nectarine, getting soaked at the spray park, and cuddling before bed.

Tomorrow's agenda includes marshmallows, family get togethers, boat rides, and fireworks. Once again, those weeds will have to wait.


- Posted using BlogPress from my iPad

Homebody

Kyan and I returned home from our trip to Boston earlier this evening. The fact we returned home is very important because in the 31 hours we were gone, my sweet 3 year old asked me 12,403 times when we were going home.

But, let me start at the beginning.

Kyan and I set out yesterday for Boston with three goals: Touch tank at the aquarium, Duck tour, and quality one-on-one time (the last one was really my goal...). As we turned onto the Thruway, Ky realized Boston was not close, and made his first request to go home.

I should note, a few weeks back he tried a sleepover with his grandma and pop-pop and ended up back home at bedtime. That should have been my first clue to his homebody nature.

Anyhow, last night we arrived and walked to Boston Common to run and play on the playground, but the whole time Ky was very quiet. After dinner we called Kelly and Rory using FaceTime, which did not help at all. What did help? Jumping on the bed! Because you can, and should, do that when not at home.

Today we went to the Aquarium and had a great time. Touching skates and sharks, seeing penguins be fed, watching the scuba guy in the giant tank, touching sea stars and anemones...it was all very cool. Then we went on the Duck tour which I thought Ky would love because of his love for cars. He loved it-his look of wonder as the truck drove into the river was awesome, and then when he got to go 'drive' the boat, he was thrilled.

But, when it ended he asked shortly after about home, so we came home. He greeted Kelly with a huge hug, wrestled with Rory, asked for Crosby, and then settled in with his favorite toy (a motorcycle). Very content to be home with his brothers and both parents.

I shouldn't be surprised he is a homebody. Kelly and I both have homebody tendencies as well. Now we know: when traveling with Kyan, it should be a whole family trip.