Wednesday, August 25, 2010

Waiting For The Weight Of The World

Bo's scans came back clear today, so he is good to go. One year cancer free for him! If you have a moment, read the post from today. Some good information in there about banking umbilical cord stem cells.

Skippy is home from Iraq and on Commonwealth of Virginia soil. Thanks to Skippy and all like him that represent our country well in a tough environment.

Got the final stamp of OK from the MCV folks yesterday. Actually met with the head of the Bone Marrow Transplant Unit. Great guy. We had a good discussion about my health and about what I've been up to. Funny story, in his follow up questioning, he went through a check list of symptoms and actually blindsided me with a question I hadn't heard before in the course of this process. I was proud that I had a snappy reply. I won't share any of it here. May not share it in polite company...ever. But, I thought it was funny and I'm sure he told the story of it to his colleagues. If he didn't, I'm disappointed in him. He shared some what he called "dark cancer humor" with me. I was flattered he was comfortable enough to do that.

Told him about my speaking gigs coming up and asked for his thoughts. I told him the direction I wanted to head with it and he thought it was a good concept. Told him I have a new take on the use of the word "survivor" in relation to being diagnosed with cancer.

He shared these thoughts with me, and I paraphrase...."Cancer patients do like to tell war stories and we recognize that. That's why the waiting room can be an anxious place for new patients. They sit there and hear other patients sharing some of the tougher things they went through and the new patient gets concerned as a result. We have to figure out a way to keep that minimized or to keep it from happening at all."

As I started to type this paragraph, I just came up with an idea in relation to the previous paragraph. I'll get back to you on it. I want to ask some folks what they think.

Maybe what we are looking and waiting for is already here, and it is us.

Friday, August 20, 2010

From The Land Of "Real" Barbecue

I'm talking Eastern North Carolina...
The following is a Facebook post from Hunter's mother:
"We are home with great news from the doctor! Our sweet little man remains "Cancer Free"! You can't even imagine how amazing that feels! I am so grateful for each and every minute that I get to spend with our son and health is such a precious gift! Thank you all for you support, prayers and love! God's listening!"

Thursday, August 19, 2010

I'll Give It A Shot

Versus getting a shot (or having a shot - which is what I'm sure my doctor needs after meeting with me).

Anyway, today is the one year anniversary of being taken off of "24 hour watch." How do I remember this stuff? I look back into the blog to see what was going on at any given time. This day last year, I was allowed to be alone in my house without having someone here to keep an eye on me.

Speaking of good events, long time follower of this blog, Skippy, is officially out of Iraq and is on his way home. Safe travel to Skippy.

Hunter in North Carolina is doing well, but his next set of scans is tomorrow (Friday, the 20th). Bo's next set of scans is next week (the 26th).

Coincidentally, today I met with my doctor for my 3 month check up with her. She walked in and said, "All is normal and I use that term to describe only your physical condition." She's a crack up. Truly a soul that I enjoy seeing. Sometimes I get separation anxiety when I know that I'm not going to see her and the other folks for a couple of months. I guess it's kind of like the Brett Favre thing. We were all brought together for an intense experience in which we bonded and now we need to move on with the rest of our lives. Doesn't mean we need to be separated, it's just that we won't be around each other as much (insert commentary here: As a Green Bay Packer fan, it doesn't mean I have to appreciate Brett Favre's actions, but rather, I understand a little bit of what is going on in his head.).

I asked her some questions about stuff and got good answers, but it was the first time I didn't take a sheet of written questions into the appointment. For that, she was grateful.

I told her that I would be speaking at a Cancer Survivor event in mid-September. I asked her this question (and I would also like your input), "What is the one thing I MUST say to the folks I'm talking to on that day?" She offered some great input.

I do have some ideas of my own, but I'd like your input. To be honest, sometimes survivors telling stories about their experience can get a little maudlin. I understand. It's a big deal. However, that's not me.

But.....I'm willing to listen to what  you have to say.

Tuesday, August 17, 2010

State Of My Gizzard

I reckon my doctor will give the official word on that when I see her on Thursday. There is nothing to date to indicate any concern. And since I really don't have a gizzard (nor will I ever eat them), there's another reason not to be concerned.

However, there is something that is getting my figurative gizzard. Currently, there are a lot of voices speaking and, of course, they all have something to say. I'm guilty as charged as I use my blog to say stuff. However, my stuff is legitimate and without fault. Really.

Some of the things said, I agree with. Some, I don't. However, there are things said that contain loose facts. "Facts" that are geographically, politically, scientifically, theologically, traditionally, morally, environmentally, "etc., etc. and so forth" incorrect.

To those who spew them with the intent to impose your beliefs, stop it until you check your facts. You are the same people feigning concern about the outcome of the economy and the future of your homeland and yet you spend your energy and cause others to redirect theirs to the insignificant "issues of the day." The 24 hours news cycle is a blessing and a curse.

My wish and prayer is that you focus your energy in the same direction and with the same dedication to humanity like those I have met since October 2008. Would you rather be remembered for tearing something down or for building something up?

"You may say that I'm a dreamer, but I'm not the only one." - John Lennon

"I saw a new heaven and a new earth." - another guy named John

Saturday, August 14, 2010

I Kid You Not

The recent daily average of hits to my blog is usually around 15.

Yesterday, it was over 160. I have learned that without a calendar, I can tell when a Friday the 13th is approaching because of the searches for "Friday the 13th jokes" that land on my blog. I posted this on Friday, February 13, 2009. Just thought I'd share that bit of internet information with you.

Speaking of information found on the internet. I received this as part of a pharmaceutical news update. Great stuff!

Nothing medical to report for me. I have a regularly scheduled visit with the oncologist next Thursday (the 19th) and a one year follow up visit to MCV on the 24th.

Thursday, August 12, 2010

How It Should Have Been Said

Last Sunday, the Bone Marrow Transplant Unit at VCU Health Systems (MCV to us Richmonders) hosted an Inaugural Celebration Event commemorating the success of the program over the years. Patients, their family, friends and other caregivers were invited. It was a great event and there was lots of good information presented by the staff.

One of the segments of the program was hosted by the Pre-Transplant coordinator that worked with me and tolerated me, and the other host was one of the clinic nurses who also tolerated me. In the segment, they invited former patients to share their own personal remembrances. I was invited to share my story and I know I stumbled, but this is how I wish it would have come out. Here goes:

A few weeks prior to being admitted to the Bone Marrow Unit for my final chemotherapy treatment and stem cell "rescue," I awoke in the middle of the night and was processing my anxiety about what lay ahead. As I laid there, an image came into my mind. In that image, I could see the buildings of the hospital complex and they were surrounded by dark, ominous clouds. I heard the words, "Something bad is going to happen there." I knew that the image was a manifestation of my anxiety and I let myself go back to sleep.

When I began the process of collecting my stem cells a few weeks later, I met an amazing group of medical professionals in the apheresis lab who made me feel comfortable on day 1. They listened to my anxiety and offered some professional insights. We connected immediately.

During that time, I was also interacting with staff (pre-transplant coordinators, social workers, dietitians, financial coordinators) who were responsible for preparing me to take the next step in the process. It involved the presentation of "the facts" of what was ahead. All of it was presented with the perfect blend of clarity, compassion and humor.

The food service staff, always cheerful and smiling, were always sure I had the correct menu choices and that they were on time for every meal. In fact, their chicken salad sandwiches and bacon for breakfast are 4 stars in my book.

I was grateful for the cleaning folks who meticulously cleaned my room and removed my dirty linens on a daily basis.

The nurses and care partners....who did the heavy lifting, never missed a beat as far as checking on me and administering treatment. They were there when I had reactions to medications. Most importantly, they tolerated and sometimes encouraged what I called "humor."

The doctors, physician assistants and nurse practitioners were always willing to examine, listen and follow up on any concerns I had regarding my status.

After my release as an inpatient, the clinic staff greeted me warmly upon arrival, the nursing staff would care for me during visits and engaged in the "guess today's blood counts" game that we created; never letting me leave the clinic until they were positive that all of my counts and necessary supplements were verified and met the required standards.

In the shadows, but a critical cog, is the clinical research staff. Without their efforts, my treatments would not have been "standard" or even known. In fact, MCV was one of the primary clinical research locations for one of the drugs used to mobilize my stem cells out of my bone marrow. Interestingly enough, that drug did not gain FDA approval until 2 months after I was diagnosed in October 2008.

As I look back and remember, I don't see the image I mentioned earlier. I can't see an image at all. But, I can tell you, that while I was there, I got a glimpse into heaven.

Tuesday, August 10, 2010

The Evidence Of Things Not Seen

For those of you who chose not to see a picture of my actual bone marrow last week (there was one taker), had you seen the picture, all you would have seen was ordinary bone marrow. I received a call today from Annette telling me that some of the initial results are back and there is no sign of cancer in my bone marrow at this point.

In addition, the initial results from my pulmonary function test that was administered yesterday is that my lungs are functioning fine. For the type of chemotherapy treatment that was administered to me, the development of pulmonary fibrosis can occur down the road. That's why the pulmonary function test is part of the follow up regimen. we are.....

"I've never wondered if I was afraid
When there was a challenge to take
I never thought about how much I weighed
When there was still one piece of cake
Maybe it's meant the hours I've spent
Feeling broken and bent and unwell
But there's still no cure more heaven-sent
As the chance to raise some hell

Oh, it's time to start livin'
Time to take a little from this world we're given
Time to take time, cause spring will turn to fall
In just no time at all..
.." - ARTIST: Stephen Schwartz

If you read this far, here's a link to Irene Ryan ("Granny" from "The Beverly Hillbillies") singing the song. 

Monday, August 2, 2010

That Was Quick

Bone Marrow Biopsy #4 - Done. Pain and Discomfort - minimal. As a matter of fact, I found this information today: "...we ran questionnaires on 44 consecutive patients undergoing marrow draws (primarily in Jan-Feb 2009). 86% said they had no to mild discomfort. 88% said that the procedure was either less uncomfortable or about what they thought it would be. 88% also said they would do it again without hesitation."
Source: Regenexx

Cool news from today is that Annette called later on in the afternoon and said, "Your CT scan results are back and I wanted to call you and let you know that the alien has shrunk some more. He is now approximately 3" x 3" (she used centimeters when she called, but I converted it)." That means, the alien is about half the size it was when I was diagnosed. She continued with, "What this means is that the alien is most likely dead. It will continue to shrink as you go through life (would be great if the same happened to my waistline). It won't totally disappear, but it will decrease over time. I just wanted to call you and let you know so you would have one less thing to worry about." Ain't that somethin?

Of the testing, all that is left is the Pulmonary Function Test this Friday. Then, a follow up visit with the doctor on August 19 and then probably another regular doctor visit sometime in the fall.

Oh, I took my camera to the appointment today and took a picture of the bone marrow sample after it was extracted. I was going to post it to the blog, but it's sitting in the middle of some blood on a slide, so I thought I'd save you from seeing it. If you would like to see a picture of it, post a comment below and your e-mail address and I will send you a copy. It looks like a miniature gelatinous sausage (prior to cooking, of course).

That's all I got.