I know exactly how you are feeling now. Been there, done that, really did not want the tee-shirt. my best advise is to do exactly what you are doing. Regular daily activities will help you keep your mind off of it at least for some of the time. When I have a lot on my mind, I pray for some peace. That way my mind is free and I can do what I am supposed to do. You are in my prayers.

Sent by Betty in Germany | 6:17 AM ET | 04-25-2007

I drove myself crazy when I had to get my first set of scans post mets. I worried and fretted, and to make matters worse, I read the report included w/the films, and really freaked myself out. I called my onc, but he couldn't comment, not having seen the films yet, and then I had to wait to see him in a fever of anxiety.
Never again. Now, I get the tests, pick up the films and the report, put them in the trunk of my car, and forget that I have them until I go see my onc. My mental health is all the better for this. Then, I find out from my onc what's what, and when there was a problem, what we'd do about it.

Sent by Nancy K. Clark | 7:17 AM ET | 04-25-2007

Leroy - as usual, today's posting hit me just at the right time. I am counting down to my next scans (on May Day) which will show if the 2 1/2 month break I took from my "maintenance" chemo had any ill effects. As much as my loved ones encourage me to not worry, there's no stopping the "scanxiety" that occurs. Although I'm not usually a pessimist, I do tend to hope for the best but prepare for and expect to hear the worst. Best of luck on tomorrow's MRI. You know you have lots of positive vibes coming your way from all of your loyal fans!

Sent by Elena W. | 7:23 AM ET | 04-25-2007

Hey Leroy,
Have you tried meditation? There's a wonderful organization here in Minneapolis called "Pathways" (www.pathwaysminneapolis.org) which provides an introduction to many other modalities of healing--not cure. One, okay two that have really resonated with me are: gratitude, taking a moment to go thru a mental litany of the things I'm grateful for (a comfortable chair, my dear husband and his employer and the fantastic insurance they provide, proximity to a major research hospital, a doctor who specializes in the type of cancer I had, etc.)--try adding to the list every evening; and a guided meditation wherein we visualized ourselves having a deep connection to the earth, being "grounded"--I think of being anchored or having grown roots. We proceed to picturing the energy within the earth flowing upward through our bodies and going out the tops of our heads to stretch out to the stars. With the "power of the universe" flowing through our bodies we can call on that power to help us recuperate, to heal, to grow. It sounds a bit hokey, but it really helps me get thru periods of night wakefulness and past panic attacks. I hope it helps you as well.
XO

Sent by Katie | 7:38 AM ET | 04-25-2007

The nearest I get to an answer for myself is to remember the fundamental thing about time is that it is continually moving in a forward direction. Tomorrow will come. I just have to take a ride on its back and I will get there.
The other mind set I have used is that there is "safety" in the waiting space.
About this time last year I was having a lot of pain in my hip/ groin area so the drs sent me for a bone scan and blood marker tests to see if it was bone mets. People asked me when I was getting the results and why didnt I call them up and ask for them so i might get the more quickly. On thinking it over I realised that in the waiting time i still had the chance that i might not have mets and that felt safer to me than the possibility of knowing for certain that I did.

My very best wishes for your scan results.

Sent by JJ | 7:50 AM ET | 04-25-2007

there is NOTHING easy about waiting for LIFE vs DEATH. i think the wait for test results is the worst time of all..harder than the test itself, harder than the pain from going under the knife , harder than the pain from treatment. the waiting game was the absolute hardest time for myself and my husband. our minds played tricks on us and there was nothing we could do to stop it. we tried many diversions but in the end we would always come back to the topics of the "what ifs". looking back , i still wouldn't wish that time for anyone ..it is the worst...........

Sent by marianne dalton | 8:06 AM ET | 04-25-2007

My oncologist made a deal with me he'd call at the first sign of anything amiss. He has had to do that. Otherwise I just carry on. We had a laugh over treatment yesterday - He commented that I am not on any treatments meant for biliary cancer - we've gone so off the wall in other directions, but as a stage 4 I haven't been healthier in 5 years. I'm struggling with the how to carry on with the unknown parts of what is left - do I acquise to my husband's wishes and put the house on the market, or do I stand alone and enjoy my garden and pool (I'm responsible for insurance and added income to keep all this going)? And best wishes to all of you waiting for test results- we all have to find our best way to cope.

Sent by Cheryl | 8:44 AM ET | 04-25-2007

Waiting for test results is the worst anxiety for us all. I had a PET scan that showed something, waited a week then had CAT scan which showed everything all right but the weeks waiting in between tests and getting results was enough to drive me crazy. Since that incident I have to keep my mediport in and have 2 more CAT scans before I can have it removed and be declared "in remission?" I feel your anxiety and encourage prayer and distraction. I wish the best for you and that whatever may come that GOD will give you the strength to handle it.
You are needed here in this forum as we all gain from your strength and experiences.

Sent by Vicki | 8:54 AM ET | 04-25-2007

For some odd reason, that I really can't explain, I have never had any anxiety over my scans. That maybe because I don't really trust them so I don't put a lot of stock in them. I mean, they read your last brain scan wrong, so why invest a lot of energy in the next one?

But the way I deal with them is to run away. Yes, I know this is not a very "adult" way of dealing with them, but it works for me. I can't rush the results, so pretty much each time I have had a scan, I have planned something that would take my attention away from what I couldn't control. Last time, I went to New York with a friend for three days. We had a lovely time just being tourists and I didn't think about the scans even once. Denial isn't just a river in Egypt. It is a great coping tool.

Plus, somehow, I have always known that whatever will be is exactly what it is supposed to be. Though that doesn't do much to quiet the night demons, it does seem to give me deeper sense of peace that I can tap into to deal with the bigger things.

Sent by Stephanie Dornbrook | 9:10 AM ET | 04-25-2007

I'm with Katie on the gratitude list and meditation. I always thought the list was a hokey idea ut I've been doing it for several months now and it can really turn your mind around to start looking for the good more often than the bad. The same is true of meditation. But I also agree with JJ - scan report waiting time is time you have when you don't have to go through treatment or make a treatment decision. Just have to remember to keeping breathing in a normal in and out way.
My thoughts are with you tomorrow for your scan.

Sent by Martha | 9:30 AM ET | 04-25-2007

Leroy you don???t have to feel alone in describing the waiting???My wait for results was 4 days and it seemed like 4 months. Once you have been diagnosed with cancer, I think it gets more and more difficult to hear the news. I called my doctor???s office four times. I kept apologizing for bugging them and my nurse kept telling me not too. She understands. I watched hours of Law and Order, soap operas, Jeopardy and cleaned out closets. Last night at 5:00 PM she finally called and YES!!!!!!! The lump was a cyst, scar tissue with some irritation present, but no cancer. So I celebrated with friends with a wonderful dinner, drank good wine, watched a loon fishing and skimming across the lake. I will never forget this day. I know more tests will follow, more chemo, more days of waiting, but I will never forget the love and encouragement all of you have given me this past week. Thank you all. Leroy, you have to know how much we are pulling for you. Now, with new vigor, I will tackle my lawn, my windows and get ready for the Race for The Cure. I am giddy with the news. God Bless you Leroy???you are in my thoughts.

Sent by Patti | 9:32 AM ET | 04-25-2007

Tetris.
My Son.
My Wife.
Jack Daniels. (only kidding...but sheesh I wish.)
Sleep.

Sent by Brit | 10:07 AM ET | 04-25-2007

Ah, the scan and then the waiting. I hate the waiting part more than anything. Last week I had my first 3-month pet scan after chemo, and then I became temporarily insane during the waiting-for-results period. Everyone knows about this temp insanity, so my results are expedited! And I'm happy to report that the results were good.

During that three months I visited family and went on a glorious vacation. I sometimes didn't even feel like a sick person! But when scan time rolls around again, then even cancer survivor seems like a misnomer. Instead, I feel as though I have CANCER PATIENT in big red letters on my forehead.

Sent by jane | 10:11 AM ET | 04-25-2007

Leroy,

I haven't had to wait for something like this - yet. I don't have any advice to give except to do anything to keep your mind off of IT.Whatever distracts and doesn't hurt you is a good idea.

Patti, I'm so glad for your news!

Sent by Diana Kitch | 10:48 AM ET | 04-25-2007

I get the brain MRI's every 6-months now. This may seem like a stupid suggestion, so forgive me if I'm being too obvious. But, I actually go to the Hospital where my Onc practices and have my MRI's done there right before my appointment with the Onc. Get the MRI at 9:30 and review the results by 10:30 -- no anxiety over waiting. Best of luck and Great Blessings to all...JB in Cleveland (and like you, after 3 years of clear scans, I put on the headphones and fall asleep in the machine now)

Sent by Joe B | 10:49 AM ET | 04-25-2007

I'm praying for good results for you Leroy.

Sent by Ruth White | 2:30 PM ET | 04-25-2007

Hi Leroy, I've been away for a few weeks, getting ready for and taking a brief Las Vegas vacation, while my husband was there on business. Talk about a place where one can forget about cancer, with or without gambling ;-)

I've been working to play down my own scan-psych-out anxiety over the past several scans, too. I've started to think that if things are getting worse inside, I still don't want that thief called cancer to steal one more good day from me than absolutely necessary. Most of us are focused on getting to better health, or getting back to a new normal in the intervening time before the scan - we're trying to make positive progress. We know that what's going on inside doesn't instantly appear the day of the scan, or during the wait period. With these thoughts, I was pretty much able to be level-headed during my last scan waiting period just last March. I hope that this might work for some of the rest of us out there.

Sent by Sheara | 3:11 PM ET | 04-25-2007

Thank you all for your deep wisdom, humor, clarity and honesty. Thank you each for your heart. You feed my roots and leave me cheering for all who inhabit this blogspace. Something about the comments today reminds me of what Elisabeth Kubler Ross used to like to ask people: "What would you do if you learned you had only six months left to live? [long pause] Why aren't you doing it?" That quote is perhaps a good one to be working on while awaiting scan or other test results. It sharpens the focus and allows the time to be used (however distractedly) towards what you feel is most precious in your life.

Sent by Sarah | 3:30 PM ET | 04-25-2007

I understand what you are saying. I did the same kind of thing. I hit the bump in the road did Chemo and was suppose to go on with my life. At 42 and a exercise instructor colon cancer is not suppose to happen! I am now facing stage 4 colon cancer and down to Avastin because my bone marrow can't handle the chemo drugs. I am going to nursing school and teaching 1 class a week at the YMCA. I pray that God will give me more years with husband and children (11-18). You are right though this doesn't define who I am. I don't tell people about the cancer unless I have to. I will be getting a PET scan and colonoscopy in May. I pray that all well be good. Maybe removal of the 3 tumors and finish nursing school next year. I believe that there is no chance we go through these things but that we can help someone else in their journey.

Sent by Susan | 3:41 PM ET | 04-25-2007

My mom had her latest PET scan on Monday. She's gone through two rounds of breast cancer and three rounds of ovarian cancer over the last 13 years, but at the moment is healthy. I'm waiting to see if I'll get the call later this afternoon or if it'll have to wait til tomorrow. Thinking positive thoughts until then.

Sent by andy carvin | 4:05 PM ET | 04-25-2007

I am with Joe B. We go to the hospital where my son's Onc practices to have all his x-rays, ultra-sound, scans, and blood tests. The tests are all in the morning. After the tests, we usually grab lunch and see the Onc and get all the results in the afternoon. The hospital is outside of our insurance network, so we have to pay extra for not waiting for the results. But as long as we can afford it, we rather pay the extra than to wait.....

Best of luck, Leroy. I'll be thinking of you tomorrow and anxiously wait for your blog next week.

Sent by grace | 4:13 PM ET | 04-25-2007

I know I've sent this before, but it does seem appropriate:
Biopsy
With every biopsy, a part of me dies
A part of my body, a part of my spirit,
Like a rock beaten down by the constant drip-drip of water,
Slowly, surely, wearing, gnawing.

Variable is the location,
Constant is the anger, the worry, the despair.
A needleful of my prostate, a snip of my skin, a scrape of my mouth,
Death of tissue, death of psyche.

The bliss of benigninity, or the malice of malignancy,
Which will it be?
Push the pause button on your life,
Don't start anything new!
When, dear God, when will that Doctor call!

Don W

Sent by Don Winslow | 6:02 PM ET | 04-25-2007

My fingers are crossed. I'll click on early Mon and hold my breath as I read your blog. Try to have some fun this weekend. I suggest a hot fudge sundae.

Sent by Linda | 6:23 PM ET | 04-25-2007

I hope you have good insurance! I reviewed my M D Anderson "statement" for 2006 a few weeks ago and almost had a heart attack when I saw the cost of MRI's and similiar tests. MDA's motto is "Making Cancer History" It should be more like "Making Profit History from Cancer Patients". Good luck!

Sent by Larry Hamm | 6:43 PM ET | 04-25-2007

Patti, I share your joy! Thank you for sharing with us.

Leroy - distraction sounds like a great plan.

Sent by Laura | 8:00 PM ET | 04-25-2007

Leroy,positively positive thoughts for you and the best outcome for your MRI results. Sing that Dusty Springfield tune, "Just wishing and hoping ..." Patti, oh happy day for you!

Sent by Pat Zalewski | 9:28 PM ET | 04-25-2007

Leroy,

After my diagnosis and surgery, there came the follow-ups, each one a mile marker. First it was once a month. After a year, I graduated to once every 3 months. Now coming up on three years, it's every four months. On each visit there comes "the test". My oncologist doesn't call me with the results, unless they are bad. A quiet phone is a good thing.

For three years my phone has been blissfully silent. And when it does ring, I let my husband answer it. I don't know how much of that is my dread it this might be the time the pathologist sees those darn, pesky abnormal cells. I think a little of that is in play. It scares me to think my cancer might play an encore (my heart is beating hard in the throat as I write this). I go to the oncologist in a couple of weeks for our regularly scheduled 4 month date. The notion of hitting another milestone of 6 months appointments has been high on my recent things-to-do list.

So what do I do to distract myself? School has been the best decision I've made. Between clinical time at the hospital, classes and homework, I don't have the time to to get my knickers in a knot over something I honestly have no control over, and isn't all of this a matter of control? Isn't the "fight" we read about the fight for control over something we can't see, talk to or reason with? Going to school has given me another shot at control in some aspect of life. And I've also discovered not only is radiologic science is something I am good at, but has been a physical, mental and emotional lifesaver.

Sent by Teri Thomas | 10:34 PM ET | 04-25-2007

Its so good to hear people talking about LIVING. I do not have cancer (thank God), but am surviving another deep depression. I am treatment resistant and I wish I could have the drive, faith and desires that you guys have. I will add you to my prayers.

Sent by amy | 4:15 AM ET | 04-26-2007

thank you veryy veryy n??ce thank you very very much..

Sent by evden eve nakliye | 5:59 AM ET | 04-26-2007

Leroy,
My thoughts are with you. Waiting sucks, sort of like cancer. Once the scans or tests are done, it's sort of like being in a free fall. All you can do is wait and hope that the net and cushions are there for you when you land or that you'll end up safely on the other side of the chasm.

My husband and I have both had cancer and we shared a recording of "Talk of the Nation" with my husband's daughter (my step daughter) She's in her late 20's and has more of an ability to understand what the disease has been like for us(for me, breast cancer almost 14 years ago and for my husband, prostate cancer 3 years ago) Whenever I sign on and read your posts or responses, I realize how valuable this is to so many people.

Thanks so much, Leroy!

betsey kuzia
albany ny

Sent by betsey kuzia | 8:50 AM ET | 04-26-2007

You have to wonder about MRI's. How many thousands of dollars do they cost. They have not added anything to treatment, nothing, but people get to see pictures of stuff they already know is there. You just have to wonder when everything costs so much.

Sent by Irene | 2:00 PM ET | 04-26-2007

Tomorrow we get the results of the scan. I am the caregiver - my husband the GBM patient. I worry - he doesn't. My stomach gets into knots - his stays calm. I imagine every scenario - he accepts every scenario. My faith is tested - his stays strong. My love for him grows ever stonger - his will last me a lifetime.

Sent by Sue | 11:20 PM ET | 04-26-2007

i was so glad to see that Jan, Bernadette, and Ann all mentioned the lack of support for lung cancer victims. I was diagnosed in January of this year. I have been receiving chemo as surgery was not an option for me this time. I am Stage IV. I must admit that I get angry when I see all the advertisements and publicity breast cancer receives. According to Lung Cancer Alliance, lung cancer is the leading cause of cancer death in the US. It kills more people than breast cancer, prostate cancer, colon cancer, liver cancer, kidney cancer and melanoma........
combined. 60 to 65% of newly diagnosed lung cancer will be diagnosed in people that were former smokers and non-smokers. The Alliance further states that the underfunding of lung cancer research has kept the survival rate almost as low as it was in 1971. Lung cancer research received only $33 million f rom 1999 to 2004 and just $2.1 million for 2005. The 2005 budget included $204 million for breast and cervical cancer research, $14 million for prostate cancer research, and $14.6 million for colon cancer research. These facts amaze me considering Stage III and IV lung cancer victims have a 5% survival rate for 5 years. If anyone has any suggestions regarding public education and fund raising for lung cancer research, please post your ideas on this blog. I would be very interested in contacting you and discussing any ideas you may have.

Sent by Linda Hawkins | 6:19 PM ET | 05-08-2007

Hello from Texas
I was about ready for bed when a friend called and insisted I turn the TV on to the Discovery Channel.
.Of course what I found was your "Living with Cancer" special with Ted Koppel..
I sat there and could not believe what I was hearing.. Someone actually knew, understood and was able to voice what I feel, You were My Interview WOW !!

I am a 67 year Young Senior that fate has brought me to the Facts of Life
I have the Big C
I was diagnosed 12 months ago with Melanoma, Ovarian and Lung Cancer.
They say the Melanoma will not kill me as it is not active and I will die of old age first
After my local diagnoses of Lung Cancer By the time I got to M D Anderson in Houston.
Lots and Lots of prayers.. But no treatment Spots on lungs are inactive also
Tell me Prayers don't get answered

Now The Ovarian is a different story...
I have a Rare Type found only in 10% of all the women in the whole US..
It is a cancer brought on from the Male hormones in our bodies and
would be equivalent to Prostrate Cancer is I were a man.. LOL UNBELIEVABLE
It figures that if I had to have Cancer it would be something different..
I have never patterned my life after other people.. So why start with Cancer LOL

When I first found out I had cancer and did the Chemo Cure all
(which did not work by the way Overian Tumor Grew)

I jokingly used the term Chemo Brain as I would forget things
(I thought the term was unique and all mine)
I was in Shock the day I heard the term from someone else.

I think that is when it really sunk in OMG I have Cancer
This is not fun and games, This Is Real and I may die
I have to get my kids and grandkids Ready for this..

To make a long story short that everyone knows
I did just that and Informed them This WAS THE RULES
NO PITY POTS for me or them

I am just the same Nanny they knew the day before
And That was the way it was to be handled
yes things may change... And we may all have to change some with them
But I will still be me and I am still in charge of My Life

I am fortunate enough to have this wonderful supportive family
When I lost my hair due to Chemo my 5 year old grandson wanted
His mother to Bald Him LOL

I am also fortunate enough to go to
M D Anderson Cancer Hospital in Houston.
Since this is so rare there have been No Case Studies on this type cancer
Since I am like you in no pain most days
and don't feel like I have this dreaded disease
I agreed to Be a Guinea Pig and see if they could find a way to cure/stop it..

If I could accomplish one thing in the time I have left this would be it

I go the 28th of May for my next series of test to see where we are
WE that's a strange cancer term for me to use the expression WE..
But guess in reality that's the way it is
WE ... as in Me and Cancer

Unlike some I was never Angry over this
I was almost thankful that... I had time
Time to Give Back and Most of all
to make lasting memories for my Grand Children
I have time to Leave memories and values on there lives

Yes this may take me out.... But Not Today
I still have Time
ISN'T THAT WONDERFUL

Anyway I wanted you to know how much "Living with Cancer" meant to me
I hope they air it again and I have some advance notice..
I have of course found your blog
I am starting at the beginning and reading through
Thank you so much for the honesty of your words
Prayers for you and your Family on your Journey
Nelda Lawson
Enjoying Life In Texas

Sent by Nelda Lawson | 6:33 PM ET | 05-08-2007

Leroy,

I saw quite a bit of the Koppel TV special on Discovery Channel the other night ... I'm so thankful that the two of you got together to do this program ... 4-days before Christmas I was diagnosed with Anaplastic Large Cell Lymphoma ... since then I've undergone six chemotherapy treatments and am currently in remission ... I had my last treatment two weeks ago and I'm so thankful to be finished ...

Thanks for your blog ... I'll be reading it from start to finish in the next few weeks ...

I have my first post-chemo appointment with my oncologist on the 18th and I'm already thinking "What if it comes back, what then???? ... I'm so fortunate that I didn't have too many complications with my chemo and with the help of friends, family, and my medical team I have been able to maintain my positive attitude ... I have a great support team at Eastern Maine Medical Center's Cancer Care of Maine and at Dana-Farber in Boston ...

Kinda of a long message to say thanks but "Thanks for sharing your experience with the me (and the world)" ... I've e-mailed this link to a few of my new cancer patient friends hoping it will be a comfort to them while they go through their treatments ... my thoughts and prayers are with you ... wish your program with Ted was on at an earlier hour ... I could not finish watching as I was to tired to stay up that late ... I just started checking out the web site and your blog and look forward to reading more ??? again, thanks...

Sent by David Holmes | 7:42 PM ET | 05-08-2007

This is my first time to wait on the PET. I was diagnosed with a neck node biopsy in September. I feel like I have fallen down the rabbit hole with Alice in Wonderland and nothing is the same. You are all so brave and strong. I want to be like you.

Sent by Sarah | 1:18 PM ET | 10-23-2007