Friday, July 29, 2011

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.

Sunday, July 24, 2011

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!"

Saturday, July 16, 2011

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.