Friday, July 30, 2010

If There Was An SAT Type Test For All This..

...I'd be nowhere near the level of knowledge I needed to be.

Thought I had this CT thing down. The cool thing that started the day was that in the past I had to drink one of the bottles of "banana smoothie" 2 hours before the test and then the other one needed to be finished a half hour or so before the test. They changed the rules (because patients were getting confused about the timing of the whole process) and this time I drank them both at the same time - 2 hours before the test. That worked for me. Not a real bad taste sensation and I thought I noticed a little "bite" in the aftertaste that made it seem like it had a little "adult preservative" in it and that I should be drinking it sometime after 5PM rather than 6AM.

The thing I learned today was that they needed for me to have recent lab work that included my BUN/Creatinine numbers. As the last test I had that contained that information was May 20, they had to take a blood sample from me prior to administering the CT scan. Needless to say, I wasn't In and Out as quick as I had scheduled.

No complaints. Just notes to self to make sure I'm aware of these details prior to the next scan - which won't be until February. As I was wondering why this had not been an issue before, I remembered (but had forgotten) that I needed to have lab work prior to a previous CT scan, but didn't question the logistics of it before. Next time, I'll know to coordinate that with my doctor's office or the scanning folks prior to the appt. I also realized that the reason it was never an issue until recently is that my blood work was continually being monitored from day 1, so all of my information was pretty up to date. The fact that it isn't up to date now is a sign of recovery and being well.

I'll still carry anxiety with me for a week or so until the doctor and I meet on the 19th of August to review everything, but I won't let it weigh me down.

Oh's something else I learned today. When the technician drew my blood, we were discussing needles and how the needle that stung me the most since day one of my diagnosis was the needle that was used to inject my H1N1 shot. I told the technician that the individual who administered the shot told me that most likely there were some burrs on the needle after he inserted it into the vaccine bottle and that is why it felt the way it did. The technician said, "That's why he should have replaced the needle after he drew the vaccine into the syringe. He's right, the needle tip is compromised when it pierces the vaccine bottle membrane. Most people will not use the same needle for administering that they used for withdrawl."

Guess who is going to keep his eyes open for that in the future.............

Friday, July 23, 2010

"...It Isn't Every Day, Good Fortune Comes Me Way..." *

Here's how to celebrate today's event
 Photo image: Unilever

Here's the birthday card

"On behalf of all the people who have assembled here
I would merely like to mention, if I may
That our unanimous attitude
Is one of lasting gratitude
For what our friend has done for us today
And therefore I would simply like to say :
Thank you very much
Thank you very much
That's the nicest thing that anyone's ever done for me
I may sound double Dutch
But my delight is such
I feel as if a losing war's been won for me
And if I had a flag, I'd hang me flag out
To let us all the final victory touch
But since I left me flag at home
I simply have to say :
Thank you very, very, very much
Thank you very, very, very much" *
 *Leslie Bricusse

Thursday, July 22, 2010

"Make Me Smile"

This article was posted on an e-newsletter that I received from the Massey Cancer Center in Richmond VA.

Great article. I have never met the patient the article speaks about, but Dr. Toor was my primary doctor when I was there and I was visited regularly by the other two doctors that are mentioned. In addition, I suspect I know who the Nurse Practitioner is that was quoted in the article and he is also a credit to his profession. If he is one and the same, a story I have about him is that he was my nurse a few times while I was there as he volunteered to fill in during some days when they were short staffed.

And of course, the nursing staff. The heavy lifters and the compassion givers.

Another group that can go unnoticed is the support staff. I'm speaking of pre-transplant coordinators, the counselors, the administrative staff and the folks in clinical research. If they didn't do what they do (and do it as well as they do), it would be rough going for all (doctors, nurses and patients) who rely on their efforts.

For everyone in the process, I give thanks for who they are and what they do. I'm proud of them.

The stories I could tell you about all of the folks I encountered.

If you ask, I will.

Wednesday, July 21, 2010

"I Was Standing There On Capitol Hill"*

*With apologies to Dave Frishberg.

Today is the one year anniversary of my last chemotherapy infusion. Somewhere around the very hour that I am typing this, was the "unhanging of the last bag." This Friday is the one year anniversary of the return of my stem cells. Some of the folks in the business call it "your other birthday."

Next week (Friday, the 30th) starts the next round of tests, scans, etc. as part of the 5 year plan. Not a lot of anxiety about it, however since the CT scan is on the 30th, I will be a little edgy about waiting for a call from the doctor's office saying as a result of the CT scans, they want me to have a PET scan. That call would indicate there is something in the CT scan that concerns them. If I don't receive that call within a week, we could be clear sailing.

The following Monday (August 2) is a bone marrow biopsy. The good news (for Annette) is that I have nothing diabolical planned for that appt.

Last night, I attended a Breakaway From Cancer event at the Rayburn House Office Building on Capitol Hill in DC. I was invited by the good folks at National Coalition for Cancer Survivorship. I drew an arrow on the photo pinpointing the approximate location where the event was held.

There were a couple of folks there from Congress. The purpose of the event was to highlight the needs of cancer patients and the tools and resources that the folks who sponsored the event provide to those affected by cancer. There is a wealth of great information available through the organizations involved and the discussion I had with some of the folks present, including survivors, was how to get that information out there at the right time.

One of the survivors described her experience upon receiving her diagnosis as going into a tunnel and feeling the weight of the diagnosis envelop her. For some time, the ability to think rationally escaped her.

I remember that I shut down from wanting to absorb any input about my diagnosis unless it came from a doctor or nurse. I allowed no one to have any credibility that wasn't a part of the medical team. There is only so much you can absorb at the outset.

That's why I think it is important to get previous patients connected with newly diagnosed patients as soon as possible. It doesn't have to be a mandatory thing, but it could be a question that is asked by the medical team ("Would you like to talk to someone who has been through what you are facing?") or by the patient themselves ("Is there someone I can talk to who has been through what I am about to go through?"). Support groups are a good source, but not everyone (myself included) feels like interacting with a large group during the process. I will never forget the kindness of a gentleman from Williamsburg VA who I spoke to before I did my stem cell transplantation. He had been through the procedure and he spoke openly and honestly to me about the process. He also offered encouragement.

I will be working with the Leukemia and Lymphoma Society to be trained as a volunteer "First Connection" resource. Honestly, I wasn't aware of this resource when I was diagnosed. It's the fault of no one, but the various agencies are aware that the information they have doesn't get into the hands of the patient or caregiver at the most opportune time. They are working on how to correct that.

I think to be successful in getting the word out, the effort has to be grass roots and word of mouth. As a result of a personal connection via friends or family of someone who has been newly diagnosed with cancer, I have talked, and am willing to talk, to both patients and caregivers as they go through the journey. I'd like to think I have been able to help.

If you have not personally experienced cancer, but are sharing the road with someone who is going through the cancer experience, the best thing you can do is not to offer advice, horror stories or medical assessments. All you have to do is listen and offer help for what you hear are the needs of the patient. It can be a trial and error process and it won't always be graceful.

However, you will experience grace.

Sunday, July 18, 2010

One Of These Things...

Valerie, who wrote the winning CURE Magazine essay and whose blog I follow, sent me a link to a story from an Indianapolis TV station about someone named Greg Frazee. She came across it because she had noticed that folks had logged onto her site while searching my name.

Sorry, wasn't me. I'm older than 45.

Today, I sang in a quartet in church. I was privileged to sing with 3 other folks who are extremely talented.

I was reminded that last year, on this Sunday in July, I met three other folks who are extremely talented. I had met all three of them prior to that day, but I didn't know they were part of a "pack."

I enjoyed them as professionals and as human beings.

One of them replaced my blood soaked bandages after my port was inserted, the other was there in the room when my stem cells were returned to me. She followed through to make sure they were no delays or snags in the process. The third, provided me with Popsicles, which I learned was standard operating procedure, in advance of the stem cell infusion to minimize any side effects I would experience in my mouth due to the infusion. On the day I was released, she trimmed my hair (what was left of it) so I wouldn't look like a freak with a bad haircut.

On the day that I "met" them as a group, they gathered forces to critique my pajama bottom and shirt coordination. They executed a drawing of the patterns I was wearing that day and wrote the words, "Call the fashion police" on the drawing and then taped it to my hospital room door.

From then on, when I knew they were on duty, I would wear the most mismatched ensemble that I could. It accomplished several things. It guaranteed a visit from them even if they weren't my assigned nurse that day, it made them laugh, and it took the edge off of my stay.

"Laughter is the closest thing to the grace of God." - Source unknown

Friday, July 16, 2010

Well, Here It Is

The one year "anniversary" of the day I was admitted to MCV to finish off the alien.

I'm "celebrating" by doing something today that I couldn't do last year. As I write this, I'm in Laurel MD preparing to meet with clients in the DC area and then will head home to Richmond this afternoon. Heck, I even got to "enjoy" sitting in DC Beltway traffic last night during rush hour. I didn't really enjoy it, but it didn't make me crazy. I didn't even notice that anyone else on the beltway was particularly annoyed by it. I did manage to receive a "blessing" from someone following me through a traffic circle near where I stayed overnight last night. Guess they didn't like the way in which I entered the circle. I waved back at them (with all 4 fingers upraised - telling you that so you know I wasn't rude in my reply).

If it were raining (or snowing) today, I could disassociate today from last year. However, the weather is similar. I'm not mopey or anything about today. Just cognizant that it's "that day." Next Friday is the one year date of getting my stem cell "rescue." We'll see how that goes.

The thing that gets my attention is that from this time last year until early January of this year, my comings and goings were at the mercy of treatment and after effects. That was a long time. It is in the past now, but as I told someone after I went through a 6 month period of unemployment over 18 years ago, "A 6 month unemployment period does not mean you recover from it in 6 months." It takes awhile to recover. I sit here and notice my peripheral neuropathy (which is most likely permanent - but nothing more than a numbness in my toes), and realize I have a permanent souvenir from my treatments.

I celebrate that my most recent blood counts are all normal, except for the platelet counts which are still below the normal range, but are at a level that if I needed surgery, I could proceed without concern.

I celebrate that some internal aches and funkiness I was noticing recently, and were similar in feeling to some of the same physical funkiness I was feeling prior to being diagnosed, have not been apparent the past few days.

I celebrate that I have a new follower on my blog who is a complete stranger to me. She has an amazing blog of her own that is very candid and very insightful as she deals with Chronic Lymphocytic Leukemia.

I celebrate all of the followers of my blog and their amazing blogs. Look at my list of blogs I follow and you can check out their blogs.

I celebrate that this Sunday I will be singing in a quartet during both services in church. It will be the first time I've done that since before the alien came to visit.

I celebrate I will be attending another really cool event on Tuesday evening in DC, that as promised, I will share details about on Wednesday.

I celebrate that in August, I will be attending an event hosted by the good folks at MCV that is a "Day of Celebration" that honors the good work they have been doing for over 20 years.

I celebrate that I know I walk through the world with my "holy host of others." I liked that Bill Lohmann captured the comment "At all times, there was this amazing downpour of grace on me," in his article last week.

To celebrate, one has to look in the rear view mirror to see from where they have come. Allow me that and there will be more celebrations.

Monday, July 12, 2010

"I Got That Going For Me"

Lots of nice things said about the article.

The National Coalition for Cancer Survivorship even linked to it from their home page under the "In The Spotlight" section.

This week, I have a "booster juice" infusion on Wednesday and then Friday is the one year anniversary of being admitted at MCV.

With any luck, this Wednesday could be the last time I ever need to have any sort of infusion in relation to the coming of the alien.

But....there is something pretty cool on the horizon next Tuesday evening in Washington DC. I'll tell you about it next Wednesday.

Until then, may you walk well.

Friday, July 9, 2010

"Roll The Rug Up. It's Today"*

An article, written by Bill Lohmann, is in today's edition of The Richmond Times Dispatch.

Their newsstand sales may spike a little bit today just from my own efforts, I'm thinking.

Yes, I did post this entry shortly after 3AM this morning, well, because I was curious.

I am very pleased with the article and he related alot from the "blah, blah, blah" that I fed him when we met. I was hoping that he would capture the fact that no matter the diagnosis, there is hope because you will be surrounded by amazing folks. Some that you know and some that you will meet along the way. If you have ever had any personal contact with me, you are as much a part of this article as myself.

If I've never met you, but you have been a caregiver for a person diagnosed with a catastrophic illness, the article is also about you.

I told him that I can recall everything that was done for me and everyone that shared(and continue to share) in my journey. Those stories perk me up when I need perking up and make me shake my head and say, "Wow!"

"Go into the world in peace. Be of good courage; hold fast that which is good; render to no one evil for evil; strengthen the faint-hearted; support the weak; help the afflicted; honor all people."

*Jerry Herman

Thursday, July 8, 2010

Nothin Yet

Probably sometime next week, I'm thinking.

I sent a note yesterday to the folks at the MCV Apheresis lab wishing them a Happy Anniversary. Yesterday was the one year anniversary of our meeting when they started the process of collecting my stem cells. I thanked them for their contribution in continuing my life.

For fun, I want to share with you what I said to the "Team In Training" folks the other day.

"After one of my chemotherapy treatments, I was standing in the treatment room talking to another patient. One of the nurses came up to me and said, 'I know you are on your way out and I am about to step away from the room for a little while. I wanted to catch up with you before you left and say goodbye until next time.' She then proceeded to give me a hug which I 'begrudgingly' accepted. I looked at the patient I was talking to and said, 'Had I known life was going to be this good, I would have done this cancer thing a long time ago.'

Throughout my cancer treatment experience, I have met some fantastic folks, was absolutely spoiled by friends and family, and experienced some things I never could have imagined. And now, I stand here in front of a whole new group of people who I have never met until today and I am looking at folks who are unselfishly committed to making the lives of others better through their individual efforts.

I thank you for what you do. Had I known...."