Calling Them Out (Part 1)

Won't name names, but.....

This is the first of a 2 part rant. In this post, I rant. In the next post, I share with you how to face the issue head on and how to get you well and keep you well.

On November 4, 2008 I received a bone marrow biopsy. The sample was sent to a lab in California that is out of the network of the insurance company. They paid the claim at an agreed upon amount and I heard nothing more about it. If the lab had felt that the amount was below their minimum acceptable level of payment, I would have received a statement from them requesting additional money. I didn't. I had another bone marrow biopsy last March. Same deal.

The latest biopsy yielded an explanation of benefits letter from the insurance company stating that since the lab used by my doctor's office was out of the network (it was the same lab that they have used for the previous biopsies), I would be responsible for the entire amount the lab charged. The amount the lab charged was 3 times the amount they settled for in November 2008.

I am assembling all of the previous statements and mailing them to the lab and the insurance company to remind them of how they settled in the past. I hate having to do this. I don't feel I should have to. If your response is, "I understand," I thank you for that. If your response is, "Well, that's what you have to do," I really don't want to wish this upon you, but I didn't choose to have cancer, and I hope it never chooses you. If you haven't walked through a major illness, then keep your opinion to yourself. The main responsibility of the patient is to focus on recovering. Premiums are paid not only for payment of claims, but for the service that should accompany the payments.

I do not believe insurance companies or labs are evil. I like what they do. I will name Jim and JoAnn at the insurance company as two people with whom I interacted that were absolutely amazing. I miss talking to them.

Interesting fact: My doctor's office and the folks at MCV are the only caregivers that have sent me completely itemized statements (without request) during the entire process.

As I have said before, I don't know enough about any of the health plans being discussed in Congress. However, the system is broken.

The Founding Fathers agreed and acted upon a broken system.

Slideshow Of CURE Magazine Event

Here is a link to photos of the event.

Towards the end of the pictures, there is a photo of a nurse in a pink top. She is also one of the nurses at the clinic. She administered my IVIG infusion last week.

More details and copies of the essays will be posted on the CURE site in a couple of weeks.

You know I'll let you know when it's up.

Game On!

From Bo's Caring Bridge journal

"HAPPY DAY! Bo's scans were clear and Dr. Gold says he looks great! The relief that sweeps through us when we get that phone call is unbelievable. Rob and I both cried and Rob said, "Why do we do this every time?" Which made both of us laugh.
Bo did great today. He's an old pro at this now- just a few tears when they placed the IV. He was charming and obedient with everyone we dealt with all day. We are so proud of him. And yes, he bought his game- Super Mario Galaxy 2. He had just the right amount of money and he says it was worth every penny. I let him play for about an hour this afternoon and even I enjoyed watching this one so we highly recommend it."

From my friend that I spoke about yesterday.

"Yep, yesterday at this time, the world was looking pretty bleak. Today, however, I celebrated life by buying myself 2 really great pair of shoes. Yeah, I did some other stuff, like a biz meeting, and took my mother-in-law to the doctor. But I figured I’d buy some shoes just because I can look forward to actually wearing them. Life is good…it’s all in the way you look at it."

"May the Lord keep you in His hand and never close His fist too tight." - Irish Blessing

"All I Gotta Do Is Act Naturally"

Bo goes in for a set of follow up scans today. Even though it's now part of his and his parent's "routine," it's an anxiety filled day. If you've "been there, done that," you understand. If not, you don't have to understand, but your empathy and support is of high value.

A friend of mine called me yesterday after their "regular" oncologist appointment. She was diagnosed five years ago and received chemotherapy treatments. She has been all clear since the chemotherapy treatments ended about 4.5 years ago. During the follow up appointments, the doctor's office draws blood samples and examines the lab report to see if there are any anomalies in the blood. My friend had blood drawn yesterday and was waiting in the exam room when the doctor entered with a yellow legal pad and notes written all over the entire page.

He proceeded to explain to her that there were several anomalies in her blood sample and it could mean one of several things. There was the possibility of a form of leukemia that resulted from her chemotherapy treatments, bone marrow cancer, etc. In the course of the conversation, she heard the dreaded comment from the doctor, "I know this is not what you came here today hoping to hear." Been there, done that.

She told me that she was composed throughout the entire conversation and internally, started to process what to do about the rest of her life. As the conversation continued, the doctor said, "Since this is a significant departure from all of your blood work results to date, I'm going to have them do another draw on you today." After they did the draw, they realized that initially they had given my friend the results of another patient's draw. As a result, my friend's health is good and her blood work is normal (Note: The other results do not necessarily mean that someone else was about to get bad news. The other results could be from someone currently receiving chemotherapy treatments and their bloodwork is abnormal because of the effects of the treatments).

This post is not about condemning or pronouncing judgement on the doctor or the lab. They are human. However, as a patient, in a scenario like this it is easy to accept the initial assessment because you know that in reality, "it" can come back. You live with that. Sometimes it can get in your head for awhile. However, in the world of cancer, you can ask for a redo or a review. It's OK. No one worth their salt will get offended if you do.

My friend and I talked about the "what if" and "is it back" part of all this. She's 5 years out and she said, "It never leaves you. Your spacing of the 'what if' and 'is it back' thoughts spread out over time, but there will be things that trigger them to come back every so often."

If you are a cancer survivor, you know of what I speak. If you are not, we don't seek pity. All we ask is that you hang in there with us.

"A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort." - Herm Albright

What The Boys Are Up To

From Hunter's Mother's Facebook Page yesterday:

"Holly Presgrave If you have a quiet moment, think of Hunter tomorrow....scans at CHKD....if you think Mommy & Daddy are having a hard time....his little nitemares began again on Tuesday...now it will be another week or so before he gets a good nights sleep. Bless my little angel..."

Bo goes in for his follow up scans next week on the 26th. Same thing about remembering them and the anxiety level.

They are good guys and good parents.

My Current Favorites

Obviously, I'm a big fan of CURE Magazine right now. But....I was before all the fun last week. I told them in a note that there were days that something I read in their magazine picked me up when I needed it. It has my endorsement and it is a great resource for patients. And, it's FREE! Check it out. The kindness that the magazine expresses is mirrored by the people that work there. Each and every staff person I met last week had the ability to make you feel as if you were the only person in the room when they spoke to you.

I also want to direct you to The National Coalition For Cancer Survivorship. They also have some fantastic resources that are free.

In addition, they recently published this on their e-newsletter. The picture alone should keep their web page virus free.

Wakan Tankan Nici Un

Lou Gehrig Said It Best

I visited my MCV friends on Sunday. I dressed up just for them. Seems they had a problem with my wardrobe choices when I was there last year. Something about me not being coordinated. These 4 ladies are the ones that made the biggest fuss.

Can you see any reason why they would have an aversion to what I was wearing?

"...Yet today I consider myself the luckiest man on the face of this earth....So I close in saying that I may have had a tough break, but I have an awful lot to live for." - Lou Gehrig

Indiana Jones And Topography

(Rocky Mountain Ski Resort photo taken on the flight out)

On the flight back Saturday, we were flying over the mountains of West Virgina and I looked at a road on top of a ridge. Then I noticed that it dropped down from the top of the ridge into the valley between the adjoining ridge. I wondered if the road was going down to the valley or up to the top of the mountain. I decided it was going up to the mountain.

The trip to San Diego was a mountaintop event. Most importantly it was about honoring Oncology Nurses. That was what the CURE event was about. Nurses in any medical field are tireless, driven, patient focused people. They deserve to have events in their honor. They need to be reminded that they chose an honorable profession. I tell you, there was a glimpse into heaven in that room last Thursday night.

After the readings of the essays, Ann Jillian met and greeted everyone that lined up to meet her. She stayed until the last person got through the line, and it was a long line. To have done it all over, I would have walked down the waiting line and personally greeted each individual and thanked them for what they do.

There were nice things said to me afterwards. I met some amazing people. My reply to folks that said nice things was, "I didn't write the essay. Annette did. All I did was transfer it into a visible format." The neat thing is those stories are being written every day. There were three nurses honored, but there are thousands of others out there that could have the same things said about them.

How do we honor them? I still stick with the creed of "Be Nice." Ponder those words and ask for the reality of what they truly, truly mean. If you can't figure it out, get someone to help you figure it out. Don't look for the answer, listen for it. You see, I didn't climb the mountain on my own. People helped me up it. Annette was one of them.

I was listening to a classical pops music channel on the airplane and the first song I heard was the theme from "Raiders of the Lost Ark." I thought about how that song, when played at the end of the movie, captures the momentum of the movie but also makes me feel like the adventure is going to continue. It doesn't put a final stamp on the movie, it carries me to more excitement.

As we said our "Godspeeds" ( I say friends never say "Goodbye," they say "Godspeed") to each other at the airport the other night, I told Annette that I felt like we were standing on the top of a mountain. She said, "Stay there for awhile and don't let anyone knock you off of it. I believe there are some fantastic things for you to see from there."

What a person. Of course she is.....she's a Nurse.

Sweet Dreams

Two pictures in advance of the story. The first one is during the essay reading and the second one is after the essay reading.

Good night and total peace be with you.

The Story Is

An amazing essay from Omaha, NE won. You'll be able to read the essay on The CURE magazine's website soon along with the other entries.
I had a great time and will post pictures and details when I get back home.

That's Right, I'm Awake

"Days Of Future Passed"*

"Cold hearted orb that rules the night
Removes the colours from our sight
Red is grey and yellow, white
But we decide which is right
And which is an illusion" - Graeme Edge

Walked to my car this morning, little bit of a spring in my step. Thinking about the next few days, where I've been and where I am. Feeling pretty good.

Within the hour, a call from my doctor's office telling me the full report was back on my complete blood count from last week (some things need to go to a lab) and that I would need to resume the IVIG infusion process (here's the post that talks about it from when it first entered my lexicon). I guess my chemotherapy treatment from last summer is still having it's own fun in my body. I asked if it was "normal" that this is occurring and the nurse replied that it isn't normal, but it does happen to patients who have received my form of treatment. My IGG counts are not as low as they were last fall, but they are just under the level that requires infusion.

It does not mean that there is any sort of cancerous activity taking place. It simply means that even though I tolerated all of my chemo treatments reasonably well, it was some pretty serious juice and it does take a toll on the body's blood system and requires some time to reset.

Fortunately, I do have the "bright shiny object" of San Diego to look forward to and frankly, I'll enjoy spending some quality time back with the good folks at the clinic. I have my first infusion next Thursday (the 20th) at 9:30AM. Ironically, I could receive my last infusion somewhere close to the exact day that I received my last chemotherapy infusion last year.

There have been times that I forgot I had cancer (even when I was being treated for it). So, thank goodness for my own special form of ADD.

On another note, I wrote another essay of sorts that is going to be published in this month's e-newsletter produced by the National Coalition for Cancer Survivorship. I will let you know when it is up or you can go here and keep your eyes peeled for it.

And now, off to think about packing.

I have a "ghostwriter" who will post Thursday night's results on the blog for me on Friday morning. I'll put pictures and stories up over the weekend after I get home.

* The Moody Blues

A Visual

Due to being a little paranoid and also thinking "green," I didn't throw away any empty prescription bottles. I put them in a drawer with the intent of calling the pharmacy and asking them to take them back for recycling. I didn't want to simply toss them in the trash because of the information on the prescription label. Before I returned them, I thought it would be interesting to line them up and show you how many prescriptions I went through between October 30, 2008 and October 3, 2009. There are a couple bottles missing, I suspect,and there were a total of 6 of the prescriptions contained in the paper packaging (for that prescription, 3 pills per prescription cost me about $62.00 out of pocket). The rest were generic and were pretty reasonable.

Just thought you would find the image interesting. If you look closely, there are some bottles with pills left in them. The reason is that my blood work indicated that I needed to discontinue taking that particular prescription. The stem cells did their job.

At this point, I am not taking any prescriptions at all.

Ain't that somethin'.

A Picture And What I Learned

Regular doctor appointment yesterday. Was good to see all of the good folks there. All is good medically. Platelets are still where they have been for awhile, but at a point that if I had to have surgery, I would be good to go. All other blood numbers were good.

I learned that the "alien" will always reside in my body as scar tissue. It won't dissolve and go away. Interesting. So, I'll always be carrying about 3 extra pounds. Hope it doesn't affect my qualifying for the 2012 Olympics Marathon.

The neuropathy that I feel in my toes will also be around for the rest of my life. It's not a big deal. I notice it the most when I have been on my feet for awhile.

The doctor was pretty happy with everything and I have no appointments until August. Then, there will be a round of CT scan, Bone Marrow Biopsy and doctor visit as part of a regular follow up schedule.

The picture....Nurse Annette and I. She's a Hokie fan, so that's why I didn't put her full image up there. Not really, I'm just messing with you. When we go to San Diego, they will capture the whole event on still and video camera, so you'll get to see her in those when they are posted.

On Monday, I record a version of my essay that will be posted and available as a Podcast. I imagine it will be a week or so before it is available.

Finally, and most important, a friend is having some surgery today to have one of their lungs removed. The outlook is optimistic for her recovery, but it won't be a walk in the park for her. She is a determined, strong and courageous person. She and those of us who know her would appreciate any good thoughts you could send her way.