In Sync With The Holidays

Even as a kid, there was always "something" about Morticia Addams and Lily Munster....
From last year and moving forward:
Halloween 2008 - First full day I spent out of the hospital after being admitted
Christmas Eve - Tuxedo chemo
Good Friday - Final day of chemo recipe #2
July 4 - Neupogen injection for preparation of stem cell collection
Halloween 2009 - Day 100 post stem cell transplant

All of those pale in comparison to the "holiday" that could be November 5 @ 11:15AM.

99 Days Of Post Transplant On The Wall

"One day to a new beginning
Raise the flag of freedom high!
Every man will be a king
Every man will be a king
There's a new world for the winning
There's a new world to be won
Do you hear the people sing?" - Les Miserables

Today, a trip to the hospital to pick up the contrast solution (i.e. banana smoothie) for Monday's CT scan.

Although tomorrow is a significant day on the Greg calendar, it pales in comparison to next Thursday and therefore I will change the countdown calendar tomorrow after the Day 100 calendar hits "0."

There are plans for next Friday based on either outcome of Thursday's meeting with the doctor. Either plan calls for orneriness.....in a good way.

The Top Ten (Plus Two) Things To Tell You About Chemotherapy

I was talking to a friend of mine yesterday who has a friend recently diagnosed with breast cancer. Her friend has had surgery and then will begin a chemo regimen. I shared with my friend some things she could share with her friend prior to beginning chemo treatments.

1) Chemo is poison. So are lima beans. The proper administration of either is ultimately good for you. I do believe that since I had 10 total cycles of 3 different kinds of chemo, I am absolved from ever eating lima beans again in my life.

2) Chemo is like cake. There are different recipes for each type and the recipe for either is specific to the individual.

3) If anything feels abnormal (i.e. nausea, pain, etc.), it's OK to tell your doctor you are feeling discomfort. I felt there were more drugs by volume to keep me from having discomfort than there were actual chemo drugs that went in me.

4) In addition to seeing the chemo room, ask (and politely insist) that you meet the chemo nurses before you begin treatment. If possible, ask if there is a former patient who could introduce you or offer insight into their experience with your treatment team.

5) Ask a friend or family member to go along with you at least for your first chemo treatment. It's an overwhelming feeling to go to that first treatment. Having someone along spreads out the angst.

6) Challenge yourself to make the chemo experience a special one for yourself and the other patients. Pay close attention to the "personality temperature" of the room before you cut loose too much. Watch how the chemo nurses interact with others to help you gauge the "temperature."

7) Take snacks, food and drinks for yourself. The process takes a little while and you will get hungry and thirsty while you are there. Plus, hydrating yourself is something they want you to do to help protect your kidneys from some of the chemo drugs as they flush out of your system.

8) Have a good idea of how long each treatment will take to allow for scheduling of your day and the day of anyone who may come to be with you during treatment. Total treatment times may vary as you go through the process.

9) If you feel like it, take snack treats for the staff and other patients. You'll be a hit. It's especially cool if your treats coincide with a holiday. St. Patrick's Day was a day I focused on during my treatments. The other day, I saw a green wig I bought for St. Patrick's Day on one of the pumpkins on display in the clinic office. I consider it a bit of my legacy there.

10) Be prepared that you will connect with other patients in the room. You will find yourself drawn into conversations. You don't have to do it and you can bury your nose in a book or take a nap if you like. That's OK. But, it's OK if you want to talk. Someone WILL talk to you; be it another patient or one of the nurses.

11) Frankly, any book or article that is older than 2-3 years and describes an individual's chemo experience, should not be referenced. I read a book by someone who was diagnosed with Stage 3 Non-Hodgkin's Lymphoma in 2000. The latest copyright on the book was 2008. The information should be pretty up to date, right? It wasn't. Specifically, his chemo administration and side effects were pretty dramatic and seemed ancient compared to the "modern" methods. I believe it's irresponsible of an author or publisher to keep a book on the shelves that is older than 2-3 years without updated information.

12) The chemo room is one of the times you will feel the safest and most cared for as you go through treatments. You will experience anxiety about side effects, etc. when you go home after your first chemo. It's normal. If you are feeling ill, you can call your doctor's office at any time. Knowing there is somebody who will respond to you immediately when you are feeling side effects, etc. while you are physically in the chemo room is a "peaceful, easy feeling."

"Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving." - W.T. Purkiser

Stop Me If You've Heard This One

On tap today is a visit with the Nurse Practitioner to check on blood work - regularly scheduled appointment. Pending the outcome of next week's appt. with the doctor, it could be my last visit with the Nurse Practitioner in awhile.

Speaking of the doctor, today is the one year anniversary of our first meeting. Let me tell you how that went. By the time she came to my room, I still hadn't had my biopsy yet and was still under the no eating/drinking restrictions (them medical people call them "NPO restrictions"). When she met with me, she told me that she was pretty sure I wouldn't be having my biopsy that day due to the lateness of the day. I looked at her and asked, "Does this mean I can have something to eat or drink?" She assured me that I could have food and drink up until midnight and then the NPO restrictions would kick in again for the next day.

She was standing there with her hands on the railing of my hospital bed as she spoke to me. I was so grateful that I could have something to eat that I reached up and stroked her hand. She immediately pulled her hand back and said, "I'll go see if I can get something brought in for you."

I apologized to her the next day. I think we've gotten along fine since. She's a good egg. I am giving her an "anniversary card" today and one thing I thanked her for in the card is her acceptance of what I call humor. She has a pretty good sense of humor herself.

"It's the Great Pumpkin, Charlie Brown" was on last night. It was fun to watch it as an adult and appreciate some of it's best quotes.

Linus: Never jump into a pile of leaves with a wet sucker.
******************************************************************
Charlie Brown: Oh brother. When are you going to stop believing in something that isn't true?
Linus: When YOU stop believing in that fat guy in a red suit and the white beard who goes, "Ho, ho, ho!"
Charlie Brown: We are obviously separated by denominational differences.

Anniversary?!?!?!

It was a year ago today that 3 good people with whom I work urged me to leave the office mid-afternoon and go to the emergency room of the hospital located nearby the office. My hesitation was due to having called my primary care physician earlier and telling him that my symptoms from the week before were still uncomfortable and that maybe I needed to see a GI specialist. He scheduled me for a CT scan 2 days out and said that we would proceed based on that scan. In addition, I seriously did believe that I was feeling better, but was sick and tired of feeling sick and tired. Finally, I had concern knowing that I if I stepped into the emergency room, I would be facing a significant co-pay on my insurance that I would have rather spent on more "high priority" items on my list.

Had you told me a year ago that a year later, I would still be under the care of a doctor for whatever was ailing me at the time, I would have told you to stay out of the medical profession as a career. When I wrap my head around the fact that it is now a year later, that's when my empathy grows for others who have fought their own fights for several years. Wow, I can't imagine.

I will share you a story of how I misbehaved the next morning after I was admitted the night before. I was in a semi-private room and the gentleman in the other bed was nice enough, but he wanted to talk ALL NIGHT LONG and also wanted to complain about how hot the room was. Needless to say, there wasn't much sleep that night. I wasn't feeling too benevolent to him by the next morning. I was on a no food or drink restriction due to my pending biopsy. Even though I hadn't wanted to eat much the week or two prior to being admitted, I had been stabilized by the staff to the point that when they brought him his breakfast, the smell of his breakfast let me know my appetite had returned. He began "taunting" me about what was on the menu and how good it was.

Later on in the morning, a friend of mine came to visit. Since it was a semi-private room, we drew the curtain between my bed and the other gentleman so we could have some privacy as we talked. He and I also shared a TV and we each had our own TV remote control. As my friend and I talked, he was watching TV, but would randomly interject comments into our conversation. As he did so, my friend and I would look at each other and shrug our shoulders. However, his interjections became a little too intrusive. At this point, I will explain that the TV remotes were of the such that if you changed the channel forward, you couldn't get back to the channel you were previously watching unless you cycled through the entire channel line up. After an interjection that finally plucked my last nerve, I used my control to change the channel on him. I heard him comment that the TV must be acting up and I watched the TV as he cycled back to the channel he was watching. I turned it into a Pavlovian type of experiment, i.e. each interjection yielded a channel change. Needless to say, I redirected his attention.

It's only the doctors and nurses that have to abide by, "Primum Non Nocere."

What Happens In Clayton

From Rob Baker's (Bo's Dad) Facebook:

"We held the first ever St. Baldrick's Event in Clayton (NC) on October 24. Our original goal of getting 20 shavees and raising $10,000 for childhood cancer research was blown away. In five fun filled hours, we shaved over 100 heads and raised over ...$62,000! Out of 34 events in North Carolina this year, Clayton was the third largest in funds raised. I can't tell you how proud I am of my hometown and all of the people who participated in this wonderful event. God bless all of you!!"

Below, a picture of Bo shaving Hunter's (from Manteo NC) head. Funny story - Bo and Hunter first met on Friday night. The first thing they did when they met was lift their shirts and show each other their port scars. I'm a little nervous about the first time I meet them.

Wow!

A year ago today, I was on my way home from the last time I saw the Terp football team beat a North Carolina team in person (It's a gift that I'm not allowed to travel out of town yet. May have been tempted to drive to Durham yesterday.). It was a very wet and windy day. I was feeling a little better than I had been feeling during the previous days and thought that whatever was ailing me was finally starting to leave the system. As cold and wet as I was after that game, I figured if I wasn't dead by the time I got home to Richmond, whatever was inside of me wasn't going to kill me.

It hasn't yet.

I'm finding it very ironic that one of the movie channels has been running the movie "Alien" and all the sequels lately.

Today's Magic Words

First Word: FUN

I've mentioned the St. Baldrick's event that Bo and his family organized and it is being held today in their hometown. In addition, Hunter (from Manteo) and his family are going to the event to lend their support. It will be the first time they will meet in person. The word is FUN!

Second word: NEUROPATHY

I got some of that going on and I talked to the Nurse Practitioner the other day. It's a side effect of some the drugs used in chemo treatments and I've had my share of those. It's not a big concern at this point. The following info is from the American Cancer Society website.

What is chemotherapy-induced peripheral neuropathy or CIPN?

Chemotherapy-induced (chemo-induced) peripheral neuropathy may be called CIPN for short. It is a set of symptoms or problems caused by damage to peripheral nerves. Peripheral nerves are nerves that control the sensations and movements of our arms and legs. Chemo-induced peripheral neuropathy is caused by the chemotherapy drugs used in cancer treatment.

Can CIPN be treated?

Sometimes the symptoms of CIPN are short-term. They go away over time after treatment is done. In other cases, it can take up to 2 years for the symptoms to totally go away, and sometimes they last much longer and need long-term treatment. Severe CIPN may never go away.

Three Englishmen were in a bar and spotted an Irishman. So, one of the Englishmen walked over to the Irishman, tapped him on the shoulder, and said, "Hey, I hear your St. Patrick was a drunken loser."

"Oh really, hmm, didn't know that."

Puzzled, the Englishman walked back to his buddies. "I told him St. Patrick was a loser, and he didn't care." The second Englishman remarked, "You just don't know how to set him off...watch and learn." So, the second Englishman walked over to the Irishman, tapped him on the shoulder and said, "Hey, I hear your St. Patrick was lying, cheating, idiotic, low-life scum!"

"Oh really, hmm, didn't know that."

Shocked beyond belief, the Englishman went back to his buddies. "You're right. He's unshakable!"

The third Englishman remarked, "Boys, I'll really tick him off... just watch." So the third Englishman walked over to the Irishman, tapped him on the shoulder and said, "I hear St. Patrick was an Englishman!"

"Yeah, that's what your buddies were trying to tell me."

Get Thee To A Cheerleader

Where I went to high school, we only had female cheerleaders. To have done it all over, I would have initiated a push to add male cheerleaders to the squad and I would have "volunteered" to be one of them.

In the process of the last year, I've had countless cheerleaders. Some of them have cheered with nice encouraging things and others have cheered with challenges. I needed them both. And although some of the cheerleaders may have been concerned whether they were saying the right thing at the right time, it didn't matter. I learned how to accept the cheer, use it immediately if needed, or to "file" it and pull it out later when I needed it.

I've doubted myself and my own statements from day 1. "When I was a child, I spoke as a child." I was a child of cancer last fall. I still am, but I can look back on my blog and see the growth. I did some things right in the beginning. Did some things wrong. I'm still alive, so I'll give myself a break on some of the things I did wrong. I did some things right and may have thought they were wrong, but as time progressed and as I have listened to the stories of other cancer patients, dumb luck and intuition carried me through.

"I'm just a poor wayfaring stranger
A travel'n through this world of woe.
But there's no sickness, no toil nor danger
In that bright world to which I go." - Traditional Spiritual

When I met with the Nurse Practitioner the other day, we discussed the story that was on "60 Minutes" about the gentleman who developed the radio wave machine. I asked her how metal particles know how to find cancer cells. She explained that gold particles, in particular, are attracted to cancer cells. I found this article that was interesting.

I asked her, "Are you telling me that Goldschlager may be a cure for cancer?"

I wonder if other patients have those kind of conversations with her. Probably not, or she would have resigned a long time ago.

RIP Soupy Sales (January 8, 1926 – October 22, 2009)
"Sales, who was typically clad in a black sweater and oversized bow-tie, was once suspended for a week after telling his legion of tiny listeners to empty their mothers' purse and mail him all the pieces of green paper bearing pictures of the presidents." - Washington Post

A Really Big Day

Yesterday...countless e-cards, e-mails, cards, calls and good fun.

Went to lunch with two great friends. How cool was it that the weather was suitable for sitting outside in a high traffic area where I was seen enjoying the company of two attractive ladies with balloons and presents everywhere? It got even better. We were sitting there conversing and suddenly the tune of "Happy Birthday" being played on an accordion, began behind my back.

I thought, "This is the first restaurant that has used this method for birthday greetings."

I turned to acknowledge it and was very surprised that it was my friend, Jimmy (a very talented and accomplished musician/musical director) standing there playing and singing greetings to me.

Here's a plug for him: He will be directing "Music In The Old Church" on November 21 at 2:30 and 8:30PM at Grace and Holy Trinity Episcopal Church, 8 North Laurel Street, in Richmond VA. I had the pleasure of seeing last year's concert. It's a Richmond treasure.

Back to lunch. While there, several other good theatre friends just happened to show up to wish "Happy Birthday." How did they know? Oh wait, I remembered with who I was having lunch. They are great people.

From there, I went to my scheduled appt. with the Nurse Practitioner. Knew I could sneak in and out of there without any mention of the birthday. Until, the Nurse Tech pulled up my records to write the orders for my chest x-ray. She looked at the screen, her eyes got big, she started grinning and she went for the Nurse Practitioner. There is an inside joke that we share and I thought it was a continuation of that. Nope, the Nurse Tech saw that it was my birthday and went to get the Nurse Practitioner and bring her back into the room so she could wish me Happy Birthday. They kind of felt bad that they made me come to the doctor's office on my birthday. Not me, I was around people of who I think highly. Worked for me.

From there, to dinner with a great group of friends with whom we all share or have shared the same employer. Lot's of laughing and lies (to paraphrase one of the people there).

I will finish with this poem that was composed for the day. I will not name to author to protect their "innocence." If you don't find the poem as the perfect blend of kindness and humor as I did, well....you need to lighten up a little bit. To borrow from Mr. Bo Baker, it was the best birthday ever!

Just look around the table
And know that every person here
Is your own personal cheerleader
And we love you so much, Dear.

So now it’s your 50th Birthday
There are candles on the cake
And we’re so glad we’re partying here
Instead of at your wake.

You’ve overcome so much this year
You fought hard, and that’s no lie
We’re happy we could help you through it
And that you didn’t die.

Our friendships have been tested
And we’ve all come out ahead
We’re happy you have made it through
And we hope the Alien’s dead.

So raise a glass to Gregory
A friend we love, respect and admire
And pray he’s blowing out candles in 30 years
With a fire brigade to put out the fire

A Lymphoma By Any Other Name (And Yesterday's Appt.)

Hadn't gotten to digging into this yet and found this yesterday while I was looking for something else.

"Both Hodgkin lymphoma (formerly known as Hodgkin's disease) and non-Hodgkin lymphoma (also known as non-Hodgkin's lymphoma) are lymphomas, a type of cancer that originates in a subset of white blood cells called lymphocytes. Lymphocytes are an important part of your immune system. The main difference between Hodgkin and non-Hodgkin lymphoma is in the specific lymphocyte each involves.

A doctor can tell the difference between Hodgkin and non-Hodgkin lymphoma by examining the cancer cells under a microscope. If in examining the cells, the doctor detects the presence of a specific type of abnormal cell called a Reed-Sternberg cell, the lymphoma is classified as Hodgkin. If the Reed-Sternberg cell is not present, the lymphoma is classified as non-Hodgkin.

The distinction is important because the treatment for each type can be very different." - Ruben Mesa, M.D. / http://www.mayoclinic.com/health/lymphoma/AN01209

From yesterday....white counts continue to march back up to normal levels (where they currently reside, i.e. in the normal levels). Platelets rebounded and aren't yet to normal ranges, but someday. The Nurse Practitioner examined my spleen (how they are able to apply pressure to your abdominal area and determine whether or not the spleen is enlarged, amazes me), and told me that my spleen was significantly smaller than last time she checked. It still has some slight enlargement, but she said that may be normal for the rest of my life due to it being one of the organs that the cancer "visited" last year when I was diagnosed. I also pointed out to the Nurse Practitioner that I had a bit of a cough that I thought was from lack of humidity in the air these days and it was drying out my throat. She did listen to my lungs and determined there was no fluid accumulating in them (good sign) and then sent me for a chest x-ray just to be sure. If I was beyond day 100, she may not have sent me for a chest x-ray, but I appreciate her caution.

No matter who you are, with the whole flu thing going on, err on the side of caution.

One thing about the senses, when I finished with the chest x-ray, I stopped into a bathroom on the way out, and while washing my hands I discovered the hospital hadn't changed their liquid soap supplier since last year. The scent of the soap took me back a year and the recall of it conjured up a memory I wasn't too wild about. However, it was still a BIG day as you will read in the next post.

Winter Wheat

"Winter wheat is a type of cereal that is planted from September to December in the Northern Hemisphere." - Wikipedia

The picture below is my own crop of winter wheat that started coming back in a few weeks ago. The sparse areas could be due to the landing of a large helium filled metallic balloon during the germination process. After all, someone from Fort Collins, CO DID visit the blog yesterday.














Tomorrow's post will come after my appt. at 3PM.

Full Of It

I would say yesterday was the waning day of the "What If" stuff. The reason is that yesterday there was a perfect storm of a documentary on The Learning Channel about a person with a rare cancer and her response, a feature on "60 Minutes" about a gentleman that had created a machine that targets cancer cells using radio waves (thanks go out to a friend of mine for calling me and letting me know it was coming on) and a post by Bo's mother about her working through the "what if's." By the way, they are hosting a St. Baldricks's event this weekend and have raised over $33,000 towards their $35,000 goal. Good work! After that, they head out to Hollywood next week for Bo's "Make A Wish" trip.

I have identified an area for my own volunteerism when things get back to "normal." I hope to help patients with the transition from their initial contact with their oncologist to their contact with the chemotherapy team. I have mentioned it to the doctors and nurses I have met and they think it is a good idea. It would involve introducing the new patient directly to the chemotherapy team and helping the new patient see the relationship that I, as a former patient, developed with the team. The introduction would be done in advance of the first chemotherapy treatment in order to alleviate "First Chemo Day Anxiety." I remember when my neighbor picked me up to take me to my first chemo appointment. I felt like I was headed to the gas chamber because all I knew at the time was that "Now all the bad stuff due to chemotherapy side effects is going to start happening." When I left there, that day, I felt like I had been to a party.

In the meantime, if you have a friend or family member that is scheduled to begin chemo, encourage them to ask if they can speak to a former patient who has been through what they are scheduled to go through and also ask if they can meet the chemo team in advance of beginning chemo.

May God bless you to live as long as you want to; and want to as long as you live! -Scottish Proverb

Nastiness And Other People's Blogs

As a follow up to yesterday, when Barbara Ehrenreich mentioned that she became nastier as a result of her breast cancer experience, I can say that I totally understand that it happened. There have been times, that I have shared in this blog, when I wasn't the model person/patient during my process. It's part of the process to help work through the issues. It's very similar to the Elizabeth Kubler-Ross model that she addresses in her book, "The Five Stages of Grief."

The key is to recognize you are in a stage that needs assistance from others to help you move through it. I chose a select group of caregivers and friends early in the process that had permission to be honest with me and express when they thought I needed to address an issue.

I mentioned the other day about "talking about oneself." I was thinking about it in conjunction with an e-mail that a friend sent to me in response to that particular blog post. I do enjoy hearing the stories of others and you can check out what blogs I follow my clicking on my profile. I encourage you to check them out. I wish they would post their stories more often. I know some interesting people.

She Lost Me At "Hello"

I mentioned yesterday that I would introduce you to Barbara Ehrenreich today and I will.

First, I will give you the answer to one of the questions from yesterday: "Did I make the right decisions last year when this all started?" I know that I did. Looking back, I made decisions last year via a different process than I would now. Information came quickly to me last year and I made quick decisions based on intuition rather than a longer analytical process. No one told me I had to make quick decisions even though I had an aggressive form of stage 4 Non-Hodgkin's. I felt comfortable with my oncologist the minute I met her and have grown to like her and respect her even more. I think, sometimes, I even amuse her. With the knowledge I have attained since, I can assuredly say, I would select her as an oncologist if I had to go through the process again.

If you had a chance to watch the interview with Barbara Ehrenreich on The Daily Show link I provided yesterday, you may already know I am a little troubled by her. If you haven't watched the interview,she talks about her latest book, "Bright Sided." She explains that the genesis of the book took place 8 years ago when she was diagnosed with breast cancer. When she was going through it, she says that as she reached out for information and support, she was presented with statements encouraging her to be positive, embrace her disease and that she would come out of it a better person. She said, "I didn't come out of it a better person. I came out nastier."

Jon Stewart asked if those messages were a result of people not knowing what to say and they were offering encouragement as best they could. She replied that positive thinking has developed into a pseudoscience that believes the immune system can be boosted as a result of positive thinking.

Jon asked, "Isn't it the intent of some of the positive messages to comfort others going through tough times?"

She replied, " I never think delusion is OK."

To be fair to her, I will tell you that there were other portions of her interview with which I agreed. In addition, there is an excerpt from her book posted on an NPR site which I link here.

The exception I take with her is her attempt at making a blanket statement about positive thinking for cancer patients. I do not know her cancer story. I can't make a judgment on her and her reaction to any of the treatments/therapies that were offered to her. By the same token, she can not discount the importance of a positive outlook for other cancer patients. The National Cancer Institute addresses it in a section on their website under a header labeled "Emotional Concerns." Labeling something you don't understand, or have never experienced, a "pseudoscience" is a mask for selective ignorance.

To summarize conversations I have had with several doctors and nurses since last year, they have told me, "So many people come to us with negative outlooks. We understand. However, we're here to help them and we aren't going to give up on them. Some of them may not survive their disease. Some will. While they can, they should never deny themselves the ability to live every day they draw a breath. Those who come to us and show that desire (whether they survive or not), are the reasons we stay in our chosen profession."

I've talked in the past about the importance of "going good." I wish Barbara could have met Kay.

“I feel like I had zero control over getting cancer, but I have 100 percent control over how I will respond to dealing with cancer.” - Kay Yow

Clockworks

By mentioning that I was interested in "how the clock works" with regards to the drugs, etc. in this process, I was the recipient of a comment on yesterday's blog from someone employed in the biopharma industry. When I tracked the geographic location of the comment, I learned they were from Australia. I'll leave it at that as to honor their request for anonymity.

At times, I don't feel like posting anything to the blog because I feel it can come across as a little "it's all about me." I've heard it said that the most boring speech is one that focus on stories about the person delivering the speech. That's how I feel about this blog sometimes. However, when I learn that my blog has been read for use in medical research, that's pretty cool and I'll continue with it.

I will share some of my own "clockworks" with you. I've mentioned the "what ifs" in the past and I'll detail some of them for you here and now.

1) "Did I make the right decisions last year when this all started?"
1) "What if there is still active cancer after the next set of scans?"
2) "What if there are complications from any of the drugs used in my treatment, either immediate or years down the road?"

Those questions have been the primary focus of my attention the past few weeks. I will tell you that I am pretty resolute with my answer to #1 and I will go into the details of that on tomorrow's post when I introduce you to Barbara Ehrenreich. You can introduce yourself to her in advance by going to The Daily Show website and watch her interview.

I have asked several of the medical caregiver folks if it's normal to be asking these questions and they have confirmed that it's part of the process. They also said that if the questions start to be too overwhelming, that I should seek help in processing them.

The impact of the questions on me personally is what I mentioned the other day when describing the loss of energy in the 10K race. It's also the same as a clock running down and needing to be rewound. I go back and revisit some of the blog posts from last year and consider the resolution and energy I had about kicking alien butt when it all began. Even though there has been great success to date, my own personal mental energy will wane sometimes as the scan results date approaches. It's up to me to choose to rewind the clock.

Let me share a comment from one of the nurses at MCV who I truly respected because of her skill and because of the following statement.

I was sharing my concern with her about complications down the road.

She replied, "Oh Greg, don't let that bother you. By the time those things could start happening, you'll be old enough to die anyway."

Think what you want about that statement. It earned my full stamp of approval and also helped wind the clock.

Banana Trees And How Stuff Works

It's about that time to bring banana trees in for the winter. The problem this year is that I am not allowed to dig them up and bring them in. So...I have 9 trees that are up for adoption. Most of them are 3 feet tall or less and they are relatively low maintenance. Since they are small, they aren't a real chore to dig up, either. In the event you would like to adopt one or two (or all) of them, contact me at gregterp AT verizon DOT net. Heck, they'd even make a nice gift for a friend or family member.

How stuff works: I had a Neulasta shot last Friday to stimulate blood cell production. I'd had Neulasta shots before without any issue. However, this time, I felt some aching in my bones, particularly in the breast bone area, joints and in the hip. The reason for the discomfort is that Neulasta makes the bone marrow expand and send blood cells from the bone marrow into the blood stream. Since bones cannot expand, the discomfort that I felt was the bone marrow expanding inside the bones. The reason I did not feel any discomfort before was that I was receiving steroids for four days after the Neulasta shot as a counter to side effects from chemo. I figured all of that out and then had it all confirmed by the Nurse Practitioner. I told her I was the little kid that would look at a cuckoo clock and then want to tear it apart to see how it worked.

Even more amazing, is that someone concocted the whole Neulasta recipe and how it works.

They're Baaack!

Just back from the visit to the Dr.'s office. Met with the Nurse Practitioner. White counts have jumped back up. They are at the low end of the normal range, but they are in the normal range. Drugs doing their job. For now, I am not taking the antibiotics that I was on. Still have to stay away from large crowds, but also have my "privileges" that I had before. More like probation than total house arrest.

Next visit is next Wednesday, the 21st.

Falling Inside The Curve

"In a clinical study, mild to moderate bone pain occurred in 31% of the patients taking Neulasta®....In most cases, bone pain was controlled with a non-narcotic pain reliever, such as acetaminophen." Source: http://www.neulasta.com/patient/support/support.jsp

Yup, they are right. The last time Neulasta was injected into my system, I was also taking steroids, so the side effects may have been minimized. I'm not in awful pain or anything, I'm just aware that there is something inside of me that is hopefully doing it's job. It sure ain't your grandmother's aspirin.

Sometimes I'm asked if I feel fatigued when my blood counts are down. Good question.
It depends on which counts are down. If my white counts are low (which they currently are), then I am susceptible to infection, viruses, etc. White blood cells are the cells that fight off infection. If the red counts are low (which currently they are just outside the minimum level), then fatigue sets in.

To further add to the confusion, within the white and red cells, there are subsets. That's as far as I'll go with it today. Tomorrow, I'll wait until after my appt. at 2:30 to post anything.

I've Never Run In A Marathon

And I never intend to. I've run in a couple of 5K's and some 10K's. The one thing I remember about all of them is that there is a level of adrenaline at the beginning that makes you believe you will be the person that finishes in record time, or at least you will finish with a personal record. In one of the 10K's in which I ran, I started fading about two-thirds of the way into it, but knew a water stand was just ahead. When I got there, they were out of water. As a matter of fact, all of the water stands were "dry" between there and the finish line. Needless to say, my pace slowed. I finished the race, including sprinting the last 50 yards or so, and hit the energy drink free give away stand just beyond the finish line.

That's what the blood results from Friday felt like. No water at the water stand.

Here's hoping that the water stand I pass on Wednesday afternoon has water.

While watching the NC State game on Saturday, they showed a feature on this. Interesting stuff.

The Counts Have A Mind Of Their Own

At today's appt., the blood work results indicated a pretty dramatic dip in some counts, including the white counts. They consulted with the Dr. at MCV while I was there and they are certain the dip is the result of side effects from the two drugs they have me on to fight off and prevent infections due to having a compromised immune system. They have taken me off those drugs and also gave me a shot of Neulasta to stimulate white cell growth (it is the same drug they gave me after chemo treatments and it was effective).

My next appt. is Wednesday and they will take another look at blood counts.

They felt pretty certain it was the drugs causing the issue and not anything indicating a recurrence of disease.

Until Wednesday, I have to behave.

Jock was out working the field when a barnstormer landed.
"I'll give you an airplane ride for £5," said the pilot.
"Sorry, cannae afford it," replied Jock.
"Tell you what," said the pilot, "I'll give you and your wife a free ride if you promise not to yell. Otherwise it'll be £10."
So up they went and the pilot rolled, looped, stalled and did all he could to scare Jock. Nothing worked and the defeated pilot finally landed the plane. Turning around to the rear seat he said, "Gotta hand it to you. For country folk you sure are brave!"
"Aye," said Jock "But ye nearly had me there when the wife fell oot!"

All Over The World

Some friends from work came by last night and brought pizza and some cheesecake. It was like a party. Let me say it again. Those are some of the best times. I can assure you, if you think that your visit to a friend going through something like this is not "good medicine" to them, think again. It's good stuff! I can't think of a time over the last year when someone asked me if it was OK to come by, that I didn't welcome their visit. It's a lesson I've learned about how to respond when I'm off house arrest and allowed to get out and about more.

Yesterday, I found this greetings from all over the world website while goofing off. Kind of fun.

"We would converse in polar bear and python,
And we could curse in fluent kangaroo.
If people asked us, can you speak in rhinoceros,
We'd say, "Of courserous, can't you?"

If we could talk to the animals, learn their languages
Think of all the things we could discuss
If we could walk with the animals, talk with the animals,
Grunt and squeak and squawk with the animals,
And they could squeak and squawk and speak and talk to us." - Leslie Bricusse

If I Go "Somewhere"..

...the next few weeks while I am engaged in conversation with you, hang with me. I think it was somewhere about a year ago when I started feeling "the symptoms." Now that I've become a slight hypochondriac, anything that feels similar will raise the eyebrows a bit. In four weeks (and a day), I will know results. Until then......

A friend of mine was telling me about some symptoms she was having and her concerns about it. In the past, she would have shrugged it off, but due to her association with others who have received diagnoses that have been dramatic, she went to her doctor and had herself checked out. I was proud of her.

As I told a friend once, "The pain in your big toe can mean something different now at this point in your life than it did 20 years ago."

I Signed In To Sign Out

In one of the ironies of all this, I received a letter from the National Bone Marrow Registry to update my information that they had on file. In September of 2002, while I was donating platelets, I signed up to be on the National Bone Marrow Donor list. As I have mentioned before, the fee to be on the list was waived since I was a platelet donor. I don't know if they still waive the fee or not, but it's a list I wanted to be on.

I went to their website to update my information and advise them that I had been diagnosed with Non-Hodgkin's Lymphoma and had received chemotherapy. In doing so, I thought the same rules would apply as they do with donating platelets after cancer diagnosis. I.E. If you are cancer free 5 years after your last treatment, you can resume the process. Not so with bone marrow donation. There are some exceptions as per their website:

"If you have a history of pre-cancerous cells, you will be able to register to become a potential volunteer donor. You are able to register if you have any of the following:

* Cured, local skin cancer (basal cell, squamous cell or melanoma in situ).
* Healed in situ cervical cancer.
* Healed in situ breast cancer.
* Healed in situ bladder cancer.

NOTE: In situ cancer is diagnosed at a very early stage and is specifically called “in situ” or Stage 0.

All other forms of cancer, including non-in situ melanoma, are not acceptable — no matter the length of time since treatment or recovery."

There was an option to update my information so they would know I was no longer "acceptable" to them, and with regret I gave them the details. I'm not upset with them. I'm glad the letter came when it did and I was able to update my information in time to prevent a false hope situation. I found the timing of the letter impeccable and ironic.

Another section on their website lets you help by making a tax-deductible contribution, volunteering, or learn how to join the registry.

I have been asked about the donation of umbilical cords for research. The website provides that information in the "help" section of the website. Encouraging stuff!

Someone Did...

....stay at a Holiday Inn Express last night. Saw that someone visited the blog from a Durham NC Holiday Inn Express. It made me snicker.

Saw some MCV friends yesterday and was telling them that I had been processing "What's Next" and "What If" questions the past few days. They told me that was a natural part of the process. Going to run some of them by the Nurse Practitioner on Friday when I have my next appt. with her.

Then, I'm reading the most recent supplement that came with the "Cure" magazine and there is an article in it titled, "Survivorship Care Plan." It addresses how to create a plan to "transition from active treatment to survivorship." It provides several websites of organizations that offer care plans. Here's the link to the article that lists the websites.

Jay

Jay, who I have mentioned in previous blog posts, passed away yesterday morning after a courageous bout. The picture is from a show he and I were in two years ago. It was a blast. All of his family and friends have their own special memories of him.

The following is an excerpt from a local theatre blog, "The Barksdale Blog."
"Jay is survived by a full cast of friends and his longtime companion, Don Warren.... Our hearts and prayers are with Don in this time of great loss. Old actors never die. Jay’s talents, his friendship and his many performances will live on in Richmond theatre history forever."

If you would like to drop Don a note, his address is: 105 South Boulevard, Richmond VA 23220. Even if you have never met Jay or Don, a note would mean the world to Don.

This Is Cool

Found this in an article in "Cure" Magazine.

www.spiritjump.org

Riding The Coaster

Not posting much today. Processing "what's next" stuff and I haven't processed it enough to share any of my conclusions.

There is a good magazine that is free to cancer patients, survivors and caregivers in the U.S. The magazine is "Cure." The link to their website is www.curetoday.com. Their articles appear on the web page, but they also send the printed magazine along with supplements every so often. The current supplement addresses "surviving well."

Good stuff.

What's Up With That?

I only have three for "the list" today.

1) If the person is in the hospital, stop by their house, pick up their mail and take it to them in the hospital.

2) If they are allowed to exercise, go for walks with them. It's great exercise and also a way to have good conversation.

3) Pick up their prescriptions for them.

While I was out walking yesterday, I remembered a story. It MAY have happened at MCV and the resemblance of any person(s) in the story to actual person(s), living or dead, is purely coincidental.

Early in my stay, after I had set out the bowl of candy for staff, I offered some candy to one of the nurses. She was delighted and asked if she could take enough to keep at the nurses station rather than having a parade of folks coming to my room for candy. I told her that would be perfectly fine. She left the room and came back with a "bowl." It was a medical toilet hat. She took some ribbing from her co-workers about using it as a bowl. Her response was, "It's clean!" I knew for a fact that it was fresh out of the closet and hadn't been used before, but I let her have her fun with it.

Here we are, October 1. 30 days from now is Day 100. There will still be restrictions after that, especially with the H1N1 issue. Here's a good H1N1 article from today's Baltimore Sun. Take care of yourselves (and others) out there!

“I am ready to meet my Maker. Whether my Maker is prepared for the ordeal of meeting me is another matter.” - Winston Churchill