Wednesday, January 30, 2008

Scanxiety and other ramblings

I only have to wait two more days until my annual full body PET/CT scan which is part of my routine follow up for stage III melanoma. The photograph above is from the CD images of a prior scan. That's as close to naked pictures as I'm likely to come on my blog unless I take photographs in a museum. Bright and early Friday morning I will be scanned from head to toe and after that I hope that I will be able to officially proclaim myself 3 years clear of cancer. I will probably leave the hospital with the CDs from the scan because I need them for my March appointment at another hospital. I started getting scans last year at a cancer center close to home which is much better than driving an hour in rush hour traffic to the cancer center where my melanoma specialist (surgical oncologist) is. After I started being followed by a medical oncologist in my home town, I was given the option of getting the scans done here.
I probably won't hear the results until next week and at that point I'll pick up the radiologist report to take with me to my appointment in early March. Let me just say that if they do give me the CDs when I leave on Friday, I will try not to look at them on my computer. They are less than meaningless to me. I see all sorts of thing because we have all sorts of organs. That's a good thing. I wouldn't know the difference between a prayer cap and a brain. I think the top of my head, in the image I began this post with, looks like the prayer caps children used to wear to chapel at the Episcopal elementary school I attended as a child. That prayer cap is my brain, I think.
There is much debate amongst melanoma clinics as to the best follow up and they all do it a little differently. Some centers don't have any asymptomatic scans thinking that the tension from scans and false positives, out weight the benefits of catching a recurrence before it becomes symptomatic. My main melanoma doctor has an annual scan as part of his protocol, although this is the first time I've gone a year before getting a scan. The issues I've had since my lymph node dissection make it hard for me to know if I'm symptomatic. I have a new name for my issues. I was looking at my last sheet from my pain doc and noticed the diagnosis was unspecified hereditary and idiopathic peripheral neuropathy and unspecified myalgia and myositis. Odd that hereditary would be used for something that started after my LND and for something that no one in my family has. I'm sure there is something I'm missing. It could be as simple as coding for insurance companies. Since some people have the problems I have after the surgery I had, I'm not sure why they can't just say the issues are following surgery. I've read that some doctors think the percentage of patients who have ongoing side effects following the groin LND are higher than previously reported. I wonder how many others, like me, with ongoing side effects aren't included in the stats for future reports. I signed the forms to be included in a data base of patients my surgical ONC is following but I have no way of knowing if my issues get chalked up to chance or to the surgery. My surgical ONC acknowledged that a percentage of patients do end up with chronic pain after that surgery. However, during appointments with NP in his group, she has been quick to say my problems aren't related to the surgery. Never have figured out what's up with that.Back to the scanning issue, I went through a cycle of three month repeats on scans because I had an imaged mass which eventually went away. The assumption is that mass was connected with my dissection and was a benign thingie, for want of a better word. The scan I had a year ago was the first one which was clear and therefore, I didn't need a repeat for a year. Because this is the longest I've gone without a scan, that may account for my increasing nervousness. The problem for me is that I have had to stop listening to my body. While a cancer patient should be alert to changes and let their doctor know of new symptoms, I have had too many symptoms and they change. I have to tune out pain and I have to have pain management. Much of the past year, I have been telling myself to get on with my life and ignore the issues I have to learn to live with. When something new happens I try to ignore it. I tell myself, you had a clear scan in March of 2007 and everything is fine. I did ask to go ahead and get my 2008 scan sooner rather than later which is why it's scheduled for February 1. Hopefully this scan will be clear and I can start trying to put this all behind me.


Anonymous said...

I saw the same set of lamb's wool clouds yesterday that your beautiful photo showed in the last post. I thought of you and how I really wish more than anything that I could throw your worries to the sky and have them vanish in those clouds.
But I can't, so I will be sending out the very best thoughts I can think your way...
And be the first to celebrate your 3 years with NED!
(That's my story and I'm stickin' to it.)
Love, K.

Try not to get worried,
Try not to turn on to
Problems that upset you.
Don't you know
Everything's alright
Yes everything's fine.
And we want you to sleep well tonight.
Let the world turn without you tonight.
If we try
We'll get by.
So forget all about us tonight.
-Andrew Lloyd Webber/Tim Rice
Jesus Christ Superstar

Yolanda said...

I wish you much luck on your test results. I know they will be okay. I love the pictures of the birds.

DeLi said...

i send you hugs carver, across miles. i see and feel, the poignancy of your pictures, so passionately expressing your heart.

King (Kathie) said...


I hope the number and content of the responses you received on MPIP shows you how much you are loved. :)))

I just know everything will be OK but I'm sorry that you have to deal with the stress of it all.

Stay Strong

jmb said...

Wishing you very good news from the scan Carver. It's always a worry for you I'm sure. I wanted to sing along when I saw Try not to get worried, Try not to turn on to problems that upset you.
I love Jesus Christ Superstar!

Carver said...

Hi Kim, Thank you so much for your support. I have been singing the JCS song ever since reading your comment. Thank you for that.

Thanks so much Yolanda, I appreciate that.

Thanks so much Deli, I appreciate your kind comment.

Hi Kathie, Thanks so much for your support. I was overwhelmed by the responses on the MPIP. Means more than I can say.

Hi JMB, Thanks so much. I've been singing the song from JCS ever since I read that. I sang with the male tenors in the chorus of a local performance of that show. It was great fun and when the chorus rehearsals were broken up by male and female singers, I rehearsed with the men which was hilarious.

Anonymous said...

Love JCS..thanks for the reminder of that great production, Kim.
Carver, I can only say what a wonderful and plentiful response you got on the many appreciate your support and therefore want to finally be able to support you. I'm waiting along with you and will celebrate your 3 years NED right along with you.
Blessings to you,

Anonymous said...

I hope you have a good report with your test results.

Those are some lovely photos.

Carver said...

Hi Sue, I appreciate your friendship and am grateful to have gotten to know you through the MPIP. The support from the people on the MPIP means so much.

Thank you Vic. I appreciate that. Take care, Carver

Anonymous said...

I pray for a good result, Carver.

have a fine weekend to you.

Anonymous said...

*HUGS* I hope that everything went well for you. I can understand how important these tests are for you and that the outcomes are good. My thoughts are with you...

Carver said...

Hi Thess and Jessica, Thank you so much for your messages. I won't know the results of the scan until next week but I'm home from getting it done and glad to have it behind me. Take care, Carver

AscenderRisesAbove said...

oh i do hear you on listening to your body and it is changing daily; not sure what it all means. i will be interested to hear if my test will be the same as what you had here.