Getting The Brain To Catch Up

Yesterday was the official 6 month follow up visit with my oncologist. She had reviewed the scans from last week and her first words to me as she entered the examination room were, "Your scans came back all clear." My blood work for the day is in the normal ranges - them darn platelets are still about where they were when I was first diagnosed - still in the normal range - but no where near where they were during treatments. Left on the schedule for the 6 month "routine" is a pulmonary function test and.....the bone marrow biopsy (over that anxiety a long time ago).

We also discussed that my power port will be scheduled to be removed. The official date for its removal is August 8 at 9AM. It is an outpatient procedure which I can drive myself to and from and go to work afterwards. I'm sure there will be some physical limitations for a few days afterwards. So be it. I guess it will be the week of taking things out of me as the following Friday (August 12) is t he bone marrow biopsy.

Interesting thoughts about the removal of the port. When I completed treatments, I immediately asked how quickly we could remove it. "Let's leave it in a little while," the doctor replied. I wondered why and developed scenarios, but ultimately it was a wise decision on her part as I needed the IVIG infusions between    November 2009 and July 2010. Leaving it in another year just to make sure blood levels were holding up now makes sense.

However, now that it's removal is inevitable, I have mixed thoughts about it. Wasn't sure why at first, but I think I figured it out.

When I went home after the first chemo treatment, when I left the hospital after the stem cell transplant, when my parents went home after staying with me two weeks straight when I was released from the hospital, when I went back to work full time, when I made my first out of town trip following my "sabbatical", and when I stepped back on stage as part of a theatrical cast, there was anxiety. It was because I had to let go of some sort of lifeline that I had been holding onto. My body was ready for the increased independence, but the brain wasn't in sync quite yet. With time, I accepted the independence and took a deep swallow of "normal."

So it goes with the power port. It is the last official physical thing that connects me to the care I received. I'm contemplating asking if I can have it after it is removed. Not so much to frame and hang on the wall, but rather to display to others and remove some of cancer's mystique. Initially, I didn't like why I had it in me, and  I didn't even look at it. Now, I look at it, but I won't intentionally touch the area of my skin where it resides underneath. Only by the cleansing ability of the water and soap that ran over that area of my skin is why there isn't a layer of grime on my skin in that area. Once the removal incision heals, I'll give that area a good scrub.

Funny story about the port....During the recent show I was in, my final scene on stage involved my getting shot at on stage and as a result, my character collapsed and died on stage. I would fall on my right side -where the port is. I never gave thought that I would fall on the port as I always fell on my shoulder and hip. Until the night before I knew my Nurse Practitioner would be in the audience the next day. I asked her after the show if the thought, "I hope he didn't fall on his port," went through her mind.

I got a look.

If they let me keep it, look for a picture of it here soon afterwards.

Was Yesterday

The second anniversary of my stem cell return.

How did I celebrate?

I went to a party. A party in honor of the person I spoke about in my December 31, 2010 post. She passed away in April. When I thought of her I remembered several comets that appeared in the sky during my teen years. I had never seen one before and a couple of them during that time were "no shows." Never saw them. I can't remember specifically which one I did see, but I did see it. The best time to observe it was sometime after midnight. As I usually went to bed in the 9:30-10:00 time frame, I didn't stay up to see it, but I did wake up sometime after midnight one night, looked at my clock and then went to the kitchen window of our house, which faced east, and I saw it in the sky. It wasn't the blazing ball of fire that I expected, but rather a slightly glowing streak that stretched from near the eastern horizon to somewhere almost directly overhead. "What a bust," I thought, "Maybe Halley's comet in a few years will beat it." I saw Halley's comet in 1986 and was not impressed.

As I remembered my friend yesterday, I remembered that I have two of her messages to me on my answering machine. I will not erase them. They were messages in which she called me her friend and a hero. Hero....hardly. I was fortunate enough to get to meet and know her in a short time frame (less than a year), but we shared conversations about our cancers (her cancer was different than mine) and how to deal with the mental challenges. During her cancer experience, she grasped life and lived it and it was never more demonstrated than in a picture of her that was at the party yesterday. It was a picture of her dancing on the beach in a sundress a few months after her diagnosis.

The comets in the sky were not so much. The bright light that shone in my friend and still shines in the hearts and memories of her family and friends......impressive.


 "It will not come by watching for it. It will not be said, 'Look here!' or 'Look there!'. Rather, the Father's kingdom is spread out upon the Earth, and people don't see it!"

I Was That Close

To taking some homemade treats to my friends at the Bone Marrow Transplant Unit today to "celebrate" my second anniversary of meeting them.

Then I remembered that I was diagnosed with a MRSA infection a couple weeks ago (no idea how that came about, although I have some theories) and am finishing up my antibiotic regimen for that. Didn't want to take anything else down there except for some treats, so I'll wait and maybe go down on the anniversary of my release from there.

The MRSA thing, not a big concern. I initially thought it was some "adult puberty" in the form of a pimple on my forehead. Then, I realized that its initial appearance was a scab. Then, I thought it could be a spider bite. Was feeling pretty fatigued, headache that wouldn't go away and some cold chills in the middle of the night. I investigated on the internet - when will I learn NOT to do that. Went to the doctor and gave them my diagnosis and they gave me their diagnosis instead. I didn't ask for a second opinion. Treatment called for an antibiotic twice daily for 21 days and using a soap that medical professionals use to scrub my fingernails and forehead area.

My question for my oncologist, when I see here in a week and a half, will be, "Even though it has been over a year and a half, is my immune system still somewhat compromised?" We'll see.

Totally forgot last week that I have a regularly scheduled CT scan on Monday - until a reminder popped up on my computer calender to pick up the "Banana Smoothie" contrast solution yesterday. I actually called the hospital to confirm I had an appt. on Monday. I do. Would make sense that I do since I have an appt. with the doctor on the 28th to review the results of the scan.

A co-worker, who was very supportive of me during my "sabbatical" was diagnosed with a rare form of cancer in May and passed way on July 6. Was a bit of a shock and was especially difficult for him and his family as he was a few years younger than me, had a wife and two sons (one in high school and one in college). Made me start thinking as to whether a major illness is more difficult for a person in a relationship or for a single person. I have thoughts to share on that. Will be interested in yours. Will make it the subject of an upcoming post.

Andri (Part 2)

"You like that life? Kind of tough to settle in and make friends."

"Actually, I have lots of friends everywhere I've been. The best part....you get to tell your stories and jokes new every time you relocate somewhere. I like to think I stay long enough to be considered boring and then I move on. It's been a rewarding experience. Someday, when I'm finished, I'll stop doing it. For now, I'll stick with it."

"Good for you."

Silence. Andri looked at the clock to see if it was 20 after or 20 until the hour. He had heard that when the silence happens in a conversation, for some reason it always occurs at that time in the hour. The clock showed 6:29.

"Not this time, " he whispered to himself.

"Not this time, what?" asked his new friend.

Andri relayed the story of the "clock silence" and expressed his belief that he had seen it happen more than once.

"Interesting. In some of the places I have been, I have heard the same story. Except, the time is different based on where I am. Some places, it is 10 after and 10 of, others are 15, some have been 7, etc., etc. Don't know why there is that variation, but I guess that is what makes humanity interesting. Similar, yet different."

"Guess so."

"Sir, your platelet counts are good today. Do you have time to give us a double?", Joni, the staff member asked, "You'll be in the chair about 75 minutes once we start collecting."

"Sure thing. Good way to impress you all on my first visit here."

"Thank you sir. We appreciate it."

"Andri, you'll be out of here in about an hour. However, your platelets will be used up before day end right here at the hospital."

"Excellent. Be out of your hair soon enough, I guess."

"Yes, but we will expect to see you back in a couple weeks."

Andri's collection went without a hitch and indeed he was finished in a little over an hour. He never really stuck around for the snacks afterwards. He had done this long enough to know he never experienced any side effects and his office was less than a mile away, so if he had any problems, there would be someone around to help.

"Catch you all later. Nice to meet you sir. See you around. Don't let these folks tell you they need to switch arms in the middle of  your collection. That is there favorite initiation ritual to new people."

"Get out of here, Andri. Don't lie to him."

"Someone needs to tell him the truth."

With that he was out the door and down the sidewalk.

"Good start to the day," he thought. He only hoped that the person receiving his platelets would have plenty more good days ahead.

Part Of Chapter 2

CHAPTER 2: ANDRI

Andri was normally the first appointment of the day at The Blood Bank in University Hospital. He would arrive early, make his donation and then head off to work, arriving 15 minutes later than normal. He was surprised when he saw another person already in one of the chairs beginning the platelet donation process. He felt like the staff had “cheated” on him. He felt that he had developed a bond with them because of his early arrival time. Given the time of the day, there normally weren’t a lot of folks donating and in spite of the fact that he would bring along a book or a DVD to watch, he would usually end up talking to the staff for the two hours he was there. It was a time for him them to bond by sharing stories of vacations, celebrations and heartbreaks. In addition, they solved all of the worlds’ problems and in doing so, brought peace on earth. 

Andri knew of the value of platelet donations to those who ended up receiving them. He knew they were needed by those going through chemotherapy treatments for cancer. He wasn’t sure exactly how, but he had known too many people affected by his nemesis, cancer, and this was his way of striking back. In fact, his donation today was going to be used specifically for a current patient that he was matched to. He heard the stories of previous donors being matched and eventually meeting each other. He wished for that for himself, but it hadn’t happened yet. In addition, he also had signed up to be a bone marrow donor for the same reason.

Maybe even he was sometimes a little too proud of his mission. He always wondered if the others in the chairs next to him were as altruistic. Until the time he saw a donor a few chairs down nearly pass out as they began the process. Once the staff stabilized them, he asked quietly, “Are they OK?”

“They’re fine,” the staff member replied, “Can’t tell you their background due to HIPPA, but they are as dedicated as you to helping cancer patients. Let’s get you started. What arm do you want to use today?”

“Yours.”

“Ha! That’s a new one.”

“From me?”

“Nope, first time I’ve ever heard that response. However, it doesn’t surprise me that it came from you.”

On this day, Andri was a little too tired from some long hours at work and restless nights to engage in too much wittiness. Plus, the guy in the next chair, well, something didn’t seem right about him. It was as if there were words poised on the tip of his tongue and in his countenance, but he wasn’t saying much.

“Maybe a first timer. Might need some calming,” Andri thought.

Suddenly, he spoke.

“Nervous?” he asked Andri.

“Nope. Done it many times before. Actually, this is my 40^th time. Used to it. How about you.”

“Don’t know how many times or how long. Seems like it’s been forever. This is the first time here, however. Just moved to town.”

“Where did you move from?”

“Let’s see, where haven’t I lived? My job takes me all over the world. Last place I lived before moving here was Toulouse, in France”

“Gipsy Kings!”

“Close. Love those guys!”

“What were you doing over there?”

“I do missions world-wide. So now I’m here.”

“Interesting. How long are you here for?”

“Probably a few years. That’s been my history. Spend 3 years or so getting a project up and running, and then I move on to the next one.” (to be continued)

A Promise

Was reading some blog posts from last year and was reminded I promised this:

CHAPTER 1: THOMAS

Thomas wanted a view. He wanted to see. The floor of the hospital where he was being treated had windows that faced east and windows that faced west.  The east facing windows looked out over a vista that stretched at least 5 miles from right to left and 3 miles straight ahead. There were multiple urban streets, an interstate highway, railroad tracks, a river and a view of one the nighttime city hotspots. Plenty to look at, plenty to see. Looking at the view confirmed that the city was alive. The trade off was that the room was smaller. It was a room that would have been considered a private room in its past. On this floor, all of the rooms were private, except that the west facing rooms were originally semi-private rooms and were somewhat larger.

Thomas’s view, out of the west facing rooms, was of adjoining hospital buildings of various architecture and construction. The buildings included the original hospital structure that was constructed as part of the WPA program.  The red brick and copper roof structure with a visually interesting personality stood in contrast to the concrete walls of the other buildings that created a non-descript canyon. Another building had what looked like to be a light blue rope light along the top edge that lit up at dusk and stayed on until dawn. He thought it to be of decorative intent, but wondered if it was also intended to help Medevac  pilots to find the adjoining building where the landing pad was located. It didn’t matter much. By the time the sun reached the point in the sky when it would shine directly into his room, Thomas would lower the blinds and take a visual siesta from the scene until the sun went beyond the man-made horizon. He would then raise the blind and keep it there until right before he fell asleep for the evening.

The view Thomas most wanted to see, he missed. Fourteen days after his admission for chemotherapy that required a stem cell transplant to “rescue” his immune system, Thomas would be infused with various blood products including whole blood, platelets and plasma. It was a non-invasive process with minimal risks, but there was always the possibility of his body rejecting the new guests in his system. At this point in his life, he was at his most susceptible to infections and viruses. Although he was alert and felt reasonably well, he literally was as close to death’s door as he had ever been in his life. A sobering thought for sure, but he looked at it as there was nowhere to go but up from here.

The infusion process would start somewhere around 11:00 PM and continue through the night. Thomas had accepted that it would be a restless night, but as he had nowhere to go the next day, he could make up for lost sleep during the day. He normally settled in for the night shortly after the 10:00 visit from the nurse when she would administer the prescribed medications, including his sleeping pill.

The next time his eyes opened, the nurse wakened him to take his vital signs.

“How we doing?” he asked the nurse.

“Not long until we are finished,” she replied.

“Are you taking my vital signs early because there is a problem?”

“No, it’s 4:15 and that’s the normal time I do it.”

“Seriously, I’ve slept through five hours of you changing infusion bags?”

“Yes sir.”

“A miracle,” he thought to himself.

Lets Hear It For The Boys

I like that you continue to ask about Bo and Hunter.


This is a picture of Mr. Bo and Miss Ally Baker from Easter morning:

And this is his latest news from his Caring Bridge site


This is a recent post from Hunter's Mothers Facebook page:
CANCER FREE....the two best words a mommy and daddy can ever hear!!!! Many thanks for all your prayers!!  

And this, from a recent article in The Richmond Times Dispatch about yet another oncology nurse from Richmond being a finalist in this year's Extraordinary Healer Contest, sponsored by CURE Magazine.

"That jukebox in the corner blasting out my favorite song
The nights are getting warmer, it won't be long
Won't be long till summer comes
Now that the boys are here again
The boys are back in town........
Spread the word around" - Thin Lizzy