Been There, Done That

 
“I joke with my doctors that I've already had just about every procedure there is, but that's not too far from the truth.”
 
 

My time off may be over. The scheduling folks at Hopkins are trying to find a day when I can have a CT scan, blood work and a brain MRI. Oh yeah, there's also a 15 minute drug infusion that I need to get as well.

It will be a busy day. I have to admit that I have gotten used to time off from all that. It's been a while since anyone had to stab me with a needle.

Now, there are a couple of things that I'm not going to do. I'm not having another spinal tap any time soon. The risks just seem to outweigh the benefits. An MRI on my spine would be a waste of time, given all the metal that's there now. They wouldn't be able to see anything.

But let's say we do see something troubling. Then what? I don't have a lot of options.

We've pretty much used up radiation. Chemo really isn't an option for me. I joke with my doctors that I've already had just about every procedure there is, but that's not too far from the truth.

So I'm left with that troubling question. If we find something, and I think the chances are good that we will, then what? I hope my doctors may have some new ideas, cause I sure don't.

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Bless you, Leroy.. Words to you seem so inadequate.. Some of them sound really stupid, like "keep being positive" and "it will be okay" and things like that.. I just pray for guidance of the doctors and strength and patience for you.. You are an important part of my daily life..

Sent by Patsy Elmore | 7:28 AM ET | 05-15-2008

Leroy,
I hope that you will get good news with this round of tests. I will pray for you. Stan, I hope that you get good news today as well.

Sent by Jen | 7:58 AM ET | 05-15-2008

Perhaps... pondering "If & then what..." just wasn't meant to be part of our cancer curriculum. Maybe it's more of an essay question for the final exam?

Hold Fast & wear your loudest Hawaiian shirt on test day.

Sent by Don MacLeod | 8:04 AM ET | 05-15-2008

Dear Leroy, I join with the rest of Leroy's Army in sending wishes and prayers for test results that show no progression of disease. Whatever the outcome, you and your team will know more, which enables and empowers you to make the best decisions about the next steps on your own timetable.

Sent by Sheara | 8:11 AM ET | 05-15-2008

Dear Leroy,
I certainly have no answers but my husband is receiving only palliative care right now and he is calmer then he's been in 17 months. He is able to enjoy TV and has even started reading again. Our son wants him to go off hospice care and do a clinical trial but for now at least, he's been tortured enough. It's an awful feeling to be finished with doctors but life is made up of moments and maybe a few quiet momemts will be better than a lot of noisy ones.

Sent by Elaine | 8:12 AM ET | 05-15-2008

That really sucks Leroy. I sure don't have any ideas for you either. But I am going to sit here and think of you...real hard, and send you all the good vibes I possibly can.

Sent by Sue in Rochester, NY | 8:18 AM ET | 05-15-2008

I like to believe that there is always something new. Keep the spirit going. Sending good ju-ju your way.

Sent by anne lumberger | 8:25 AM ET | 05-15-2008

Egads, I misread the first line of your blog and thought you wrote "My time may be over." My heart sank, thinking the worst.

I've read your blog almost daily for months now, and feel great empathy and admiration for you, Leroy. I deeply respect your persistent candor in how you approach your life with cancer.

The rest of us could learn a lot from you. You've made it clear that at some point, the cancer will emerge stronger than your body and death will result. Yet you've found the strength to continue living as fully as possible, risking to love and be loved and engaged in every day's events no matter how big or small.

The reality is that ALL of us are in a losing position. At some point, be it disease or simply age, we all succumb to death.

Wouldn't the world be a remarkable place if we all lived our lives as deliberately and thoughtfully and appreciatively as you?

I am fortunate to not have cancer or another life-threatening disease. The flip side of that, though, is that I also lack the persistent motivation to be as conscious-- and conscientious-- in my daily life. Your blog helps me to develop the practice of being mindful.

Thank you, Leroy, for posting your blogs, for addressing each day's joys and sorrows with grace, humility and humor. You make a difference, every day.

Blessings to you,
Missy

Sent by Missy White | 8:35 AM ET | 05-15-2008

Hi Leroy, I can't think of any thing smart mouth to say, so I'll just say I'm thinking of you buddy.
Walk the walk, and do it to the glory of God.

Maybe a LiveStrong arm bracelet would help.

Sent by Donato Salazar | 8:46 AM ET | 05-15-2008

Continued prayers for good news today. Knowing the drill does not make it easier. Hold on. It's not over until the fat lady sings.

Sent by jessie | 8:51 AM ET | 05-15-2008

I think there have been other times when your doctors did not seem to have "answers" but were able to come up with creative options. Hopefully the scans will show very slow movement but if they do show something new who knows what else might be possible. I say this as my doctor looks for a clinical trial that probably doesn't exist.

Sending positive energy.

Sent by Dona | 8:54 AM ET | 05-15-2008

Dear Leroy~ you seem to be back to being the "Straight shooter" that you were before the recent episodes you have gone through. Your options are rather limited it seems, so why do the Docs want to even put you through all these tests so soon? Unless they have alternatives to what you have decided you simply will not have. If not, then why not give your body some extra time to mend, strengthen, and put on some bulk? Or it may be that YOU are the restless, impatient patient, who wants answers swiftly? You are truly a Pioneer with Cancer and may be very instrumental in the paths to discovery and eventual treatments and cures. You seem to be donating youself to Science while you are alive and able to watch the progress. That is a wonderful thought! Whatever, YOU are unique and we love you and admire your Grit!

Sent by J C R | 8:55 AM ET | 05-15-2008

This just means it's gut-check time, and you've got what it takes to face whatever comes of their testing.
At least, that's what I tell myself when testing-time comes around. When I tell you though, I MEAN it.
Love, Ellen

Sent by Ellen in N.C. | 9:07 AM ET | 05-15-2008

As already mentioned, we know what the end is for ALL people but.. it's "in the futue". It's almost impossible to think that "the future" is "now". I so hope that you will get a reprieve, and be able to enjoy another period of "calm waiting". Let us know when this battery of testing will be done. Again, XO.

Sent by Susan | 9:16 AM ET | 05-15-2008

Good Morning Leroy, Laurie and All,

Leroy, Another day of tests and waiting for results. Hopefully, these results will yield yet another avenue that can be explored successfully. My prayers are with you, my friend!!

Laurie, Another anxious period of waiting, wanting to hear the results, yet afraid of the news that may come. I think we can all relate to that scenario. Please feel the support as we are all here with you!!

To All, As we all search out our paths through Cancer World, we find strength together. But we also know that we must take individual paths as one cure does not fit all, unfortunately. I recently participated, unsuccessflly, in a clinical trial. It resulted in several trips to the ER and a hospitalization. But from this experience, we learned that this class of drugs will not work for everyone. So I'm battered and bruised but willing to dust me off and try again. I've started Chemo with Doxil and keeping my fingers crossed. No one promised that life would be easy. But as Leroy has demonstrated on so many occasions, Life is worth fighting for!! And fight--we will!!! God Bless

Eileen Pruyne
Charlotte, NC

Sent by Eileen Pruyne | 9:26 AM ET | 05-15-2008

Good luck Leroy. It's always nerve racking going in for tests. I don't envy your position. I'm always hoping for the best for you. Your blog has been a mountain of support to me.

Sent by Lisa | 9:33 AM ET | 05-15-2008

Here's hoping that nothing new is found, Leroy, and that the doctors have another rabbit to pull out of a hat if something is found. Your tenacity, courage, and honesty is a gift to us all. Wishing you well -- as always.

Sent by Ann | 9:46 AM ET | 05-15-2008

Leroy - You are so brave. Nobody has the guts to endure what you have. We can't even let our brain "go there". So I will pray for you. Really hard.

Sent by Marilyn Cowles | 9:56 AM ET | 05-15-2008

Dear Leroy,

My prayers are with you as you go through this latest round of tests that they find "nothing"! It could happen, you know. I'll be praying for it.

Sent by Connie | 10:03 AM ET | 05-15-2008

Dear Leroy,
Sending prayers that all your tests are negative. You need and deserve a break. God bless you.
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 10:05 AM ET | 05-15-2008

Leroy,
I recall in one of your previous blogs you mentioned that although we may not know what we may face in future cancer world, we do know we can handle it. That thought has been very helpful to me so thought I would remind you. Leroy's Army is always with you as you continue your journey. Peace

Sent by Ann from Michigan | 10:11 AM ET | 05-15-2008

Leroy,

Today I REALLY don't have much to say except to echo the others in - and I love this - "leroy's Army."

Given your prognosis, of course there will come a time when you are out of curative options. I really hope it isn't here yet, but if so, I have seen you have the grace to deal with what happens to you. You will have it again.

Blessings.

Sent by Diana Kitch | 10:28 AM ET | 05-15-2008

Your dignity and courage as you face the unthinkable and perhaps the inevitable is inspiring. At a moment created to bring out the best in a drama queen, your intelligence and strength inspire those of us that have had our own moments of anguished whimpering. Leroy and Laurie, you will never comprehend the power that your honesty, and bravery have had in the lives of those who walk the cancer road just a little bit behind you... Your grace under insurmountable odds provides an example for all those who follow after.... My thoughts will be with you, my tears will be tamed, and like you my goal will be to face the dying while I celebrate the living.

Sent by E. L. Russell | 10:42 AM ET | 05-15-2008

Dear Leroy,
I read your blog with some saddness, I too am on a similiar path. I have to admit it, you seem braver than I. I will hope and pray that you will get a reprieve......just maybe a bit of good news for a change. We all walk different paths but seem to be in the same shoes...Godspeed my cyber friend.

Sent by Miriam | 10:52 AM ET | 05-15-2008

Leroy
It is time for stem cell treatment. Go to another country if necessary.
Peg

Sent by Peg Heglund | 10:55 AM ET | 05-15-2008

So, Leroy, breathe and enjoy today. It sounds like they are trying to find a day to schedule the tests. If I am reading your note right and it is not today, then get every wonderful moment out of today because you are here and you can enjoy it. Don't allow the prospect of what might be the results when you have the tests rob you of today.
And love and caring to everyone on this blog.

Sent by Judy | 10:58 AM ET | 05-15-2008

I concur wholeheartedly with the sentiment expressed by Don: wear your loudest Hawaiian shirt -- and hold fast. With all my heart, I'm hoping and praying you will get good news. But sooner or later, all of us will run out of options. The bag of tricks will be empty. You have been our model for how to face whatever comes with grace and courage, dignity and humor. Whatever comes, know that you are not alone.You have the world's biggest support group, right here!

Sent by Doris | 11:02 AM ET | 05-15-2008

My husband has "exhausted treatment options" for his metatastic bladder cancer. The funny thing is that he feels better - 10 months after no treatment - than he has felt since he was ushered into cancer world. In 2006, I counted up and we had 56 treatment encounters - hospital visits, treatment visits, doc visits. Things are certainly different now; he goes to the doc every three months, they do a blood test and we head home.

We know our idyllic existance in post-treatment world will not last forever, but it sure is nice to see my husband rested and serene.

Sent by Ricci | 11:07 AM ET | 05-15-2008

Dear Leroy,
I hope that your team of doctors can come up with something to keep you going and keep you pain free. My husband is going to start his last attempt at chemo next Tuesday...............after that, I guess it's in God's hands. Prays to all.

Sent by sasha321 | 11:18 AM ET | 05-15-2008

Leroy, I want to let you know that whle you are at Hopkins, given your complaints about the TV, look for the C.A.R.E. Channel...all nature and beautiful music...my husband and I produce it and were upset that you had not found it. It is lots better than watch FOX, CNN, or the SHopping Channel... And know that we are holding you in our thoughts and sending you much strength....

Sent by Susan Mazer | 11:18 AM ET | 05-15-2008

What people without the daily reminder of cancer don't understand is that life is fragile and can end any moment. Probably the most likely way to suddenly die would be in a car or of a cardiac event.

None of us gets out of here alive. I'd rather not think about the end of my life all of the time, but at least it has allowed to get the financial things taken care of.

Still haven't picked out the coffin, though. Not ready for that just yet. Maybe I never will be.

Sent by Scott S. | 11:25 AM ET | 05-15-2008

Leroy,

Not knowing what is to come can take over all thoughts.

I know that you have pain, energy issues and other limitations but are there things that you have been hoping to do within the scope of your physcial limitations?

The quality of life issues become key. Whether it is the cheeseburger joint, a walk, a visit from a dear friend, whatever small or large joys that can be accomodated, this is the time to build them in.

We all should live like this, with a reminder like cancer there is the awareness that time needs to be savored.

Prayers and blessings to you and Larie.

Mary

PS Hospice can be a great help in making and planning quality time as well as making it as pain free as possible. The goals may change but there is help from that quarter to make your life the most it can be.

Sent by Mary Eisenfeld | 11:26 AM ET | 05-15-2008

Hey my friend whom I've never seen nor met. I've gained my perspective of the world from greeting cards. I buy them all of the time. I mean -- ALL THE TIME. Anyway, I sent my buddy one when he was diagnosed with lung cancer. The front of it had a picture of three children playing in a field or something. It said, " There is nothing more valuable than this day." Everything is put into perspective again, when I think about that. So, I say all of this to say: Today if you make it to the couch, and it puts a smile on your face -- you've lived. If you eat a bunch of French fries, you keep them all down, and it puts a smile on your face -- you've lived. If -- by the end of THIS DAY -- no one tells you that your cancer is back -- and it puts a smile on your face -- you've won. You've won today -- again. Leroy -- 1. Beast -- 0.

When we think about what might happen -- we miss what is.

I love you.

Sent by Kevin Tyler | 11:27 AM ET | 05-15-2008

Leroy -

I am wishing you well and am part of your army. You are strong and graceful and I am full of respect for you. thank you for sharing your journey and please know i am thinking of you and wishing you well. with love,

Sent by liz | 11:32 AM ET | 05-15-2008

Dear Leroy, Wishing you comfort, peace, joy and love today (and every day) to match your wondrous courage, articulate voice, depth of soul, and honest intelligence -- Oh, and let me not forget your gift of humor! I hope this day is yours to be savored "as is", in whatever manner your spirit can transport you. Wishing you and Laurie a good day, filled with good people, good moments and good tidings. ~Kim Forester

Sent by Kim Forester | 11:42 AM ET | 05-15-2008

Leroy, all of us here are sending you our collective good thoughts today! Can you feel the love? I bet you can.
It's scary to think of not fighting any harder or any longer. Dad begins his 3rd cycle of 6 cycles of chemo Monday. Then we'll be half way there. Half way to where you are now. After his 6th 21-day cycle, there will be no more chemo, no radiation, no surgery. I want the chemo to go on and on! Pretty selfish of me, huh... God bless you today, Leroy!

Sent by Linda Lee | 12:24 PM ET | 05-15-2008

Mr. Leroy,

It seems like everyone who has had some sort of happening with cancer has been in this place...I myself am healthy and cancer free, but my grandfather was diagnost with prostate cancer nearly 14 years ago, and still battling. I am truely amazed at the strength he shows...As I have been reading your blog, I find the same sort of warrior spirit in you.

I really do wish you the best.
Thank you

Sent by brandy | 12:25 PM ET | 05-15-2008

Leroy,

One foot in front of the other my friend. You are an amazing man.

Sent by Lisa | 12:25 PM ET | 05-15-2008

Dear Leroy:

I do not have cancer. My sister died of a terrible form of breast cancer in the Dominican Republic last September. My sister read your blog everytime she had the energy, and when she did not, she had her husband print it and had it read to her. You have touched so many lives!!!! It's incredible, your honesty about your feelings, the way you try to pick up "the pieces" after so many beatings. Your blog is not only for people fighting "the beast" but for us who have been lucky not having to fight that beast (for the time being)...I get so much courage, I appreciate life, I appreciate YOU for sharing your life in this incredible blog. What a GIFT you have given us.

Thank you, and God Bless you.

Sent by Ailsa Nazif | 12:27 PM ET | 05-15-2008

Leroy, Peace be with you.

Sent by Ruth White | 12:42 PM ET | 05-15-2008

Leroy and Stan, I will pray for good news and continued strength going forward, and Terri, my condolences to you.
Have a blessed day my friends....continued prayers coming your way!

Sent by Laurie Hirth | 12:50 PM ET | 05-15-2008

Hi, Leroy!
A few days ago you asked about what cancer can give. A good question when it is so much easier to focus on what cancer takes away. Here are some of the things the folks in our support group came up with:
1. Cancer can help us find our mercy for others
2. Cancer can show us the depth of others' compassion.
3. Cancer can introduce us to loving people we'd never have found otherwise.
4. Cancer can show us the power of the words, "in sickness and in health."
5. Cancer can prove to us we're braver than we knew.
6. Cancer can reveal that today is the only day we have.
7. Cancer can reveal to us how many people love us, and why.
8. Cancer can give us weeks without have to hsave our pits.
9. Cancer can teach us dignity in the face of indignity.
10. Cancer can give us space to make peace with others.
11. Cancer can provide a time to make peace with ourselves.

Sent by Kathy Miller, Tucson | 1:14 PM ET | 05-15-2008

Hey Leroy
Hope everything works in your favor when the day of the tests comes. I am amazed and awed at most of the people on here with cancer, you guys are all so cool calm and collected. I am sure that is not the case all of the time. My sister died of Non Hodgkins 2 years ago, it was only 10 months from diagnosis to her going and was a terrible shock, it was found on a routine thyroid surgery, the little bugger was hiding. She lived in Scotland, me in AZ. I went over to spend the last 8 days of her life with her, sitting in a chair by her bedside 24/7, only taking time off for a shower. She too was extremely brave, all she wanted to do was spend time with her new grandbaby, her first.
Anyway guys, I love reading your mail, Leroy I love getting your emails every day, I so look forward to them. Hang in there all, the beast does not win all the time. I shall say a prayer for you all.
Peace out and keep on keeping on
Fay in AZ

Sent by fay beech | 2:02 PM ET | 05-15-2008

Leroy, we are with you every moment. Our minds and hearts understand what you are going through. Leroy's Army will come through this with you. We love you.

Sent by Tina from Alton IL | 2:58 PM ET | 05-15-2008

Dear Leroy,

I guess no one is ready to be a pin cushion, or perhaps after all the scans, x-rays, and such glow in the dark. The LA is behind you with great suggestions. Love the loudest Hawaiian shirt, that could scare off anyone or anything. ;)

We are here behind you fearless leader or the LA.

Sending positive prayers and thoughts.

Sent by Sue Chap | 3:03 PM ET | 05-15-2008

Leroy,
Just one moment at a time. Just this moment. Then the next one.
Visualize the cancer fleeing from your strong spirit. Make it run away from you.
You never know...

Sent by Mauri | 3:12 PM ET | 05-15-2008

So Leroy,

The battle may start again. Maybe your doctors can find a clinical trial for you. We found one for my husband through the NIH. Pat liked the idea of 1)hanging in there a little longer until another treatment could come along and, 2)maybe helping some one else down the road. It worked too--he was here at least 12 months longer than he should have been.

Good luck and God bless.

Sent by Kathy B. | 3:16 PM ET | 05-15-2008

Leroy,

I agree with Missy, I have a tremendous amount of admiration for you...you've given me so much through your blog.

Loving you...every day...and Laurie too...

Sent by Faun | 4:07 PM ET | 05-15-2008

Oh those demon thoughts leading up to Scan Day. Hate 'em. You've done so well, Leroy that I can only imagine that you will continue to do so...

Sent by Becky | 4:51 PM ET | 05-15-2008

Dear Leroy,

If you tell us the day of the tests, we can all pray together for you for the results. Who knows, with so much energy focused on the same point...

Sent by Marcy in NJ | 5:13 PM ET | 05-15-2008

Wait & show dignity & grace as we all wait for more magic to appear in the bag. Meantime I am very pleased w hospice and their level of care/concern.
Dignity & grace

Sent by Cherie Brown, Tucson | 5:29 PM ET | 05-15-2008

Leroy, My thoughts and prayers are with you each day as they are with Elaine, Sasha, Tina, Laurie, Kathy B., Ricci, and Nikki and any others who have lost their husband or are currently in a battle to keep him.
Jane

Sent by Jane from AR | 5:41 PM ET | 05-15-2008

Leroy, Some good news for me. It is a lesion in the Dura small about 3/4 in. and accessible. They will hit it with Radiation. Then back to Chemo. Thank you Jen for the thoughts, always helps. Leroy, I have no ideas either! Perhaps, just a Philly Cheesesteak Sandwich. It is not a cure, but it will make you feel better. Stan

Sent by Stan Wozniak | 6:57 PM ET | 05-15-2008

As a former oncology nurse,there are no words to say that do not sound like platitudes. I do want to say I appreciate you opening your heart and letting all of us walk beside you on your journey. May God keep you and your family for whatever the future holds. I do agree with Mauri-visualise healing.

Sent by Syndi Holmes | 7:00 PM ET | 05-15-2008

Leroy: The problem with all this is that none of us REALLY know which way to chose. Sometimes I think if only Burge had stopped the chemo and radiation sooner, his last days would have been better. Unfortunately, when would stopping have been too soon. His last surgery was to stop pain that was caused by too much radiation (?) but the radiation was used to stop pain from a new tumor which was growing. It was the chicken and egg, but I know of others, like Elaine's husband, who are actually doing better for now because they stopped doing anything. Perhaps it's all in our karma.

Terri: I'm sorry you lost your husband 2+ weeks ago. I think I missed that post, or if I have just forgotten, you need a hug today anyway. I know where you are at and can tell you it will get "different" if not a little better.

I spent the afternoon at the rest home with my 95 year-old Mother. They were making play dough and the lady next to me began talking about her husband who passed about the time mine did. Of course being in a small town, we all know each other, but I had not talked about this to Ellen before today. As I listened, it sounded the same as my trip even though our ages were 40 years apart. Her husband died of prostrate cancer and like me, she admitted that no matter how hard, she would not wish him back to the pain he was in at the last. Obviously, neither time nor age makes a difference, we are all human and in this together.

Best of luck when they finally get you scheduled.

Nikki

Sent by Nikki in Kansas | 9:22 PM ET | 05-15-2008

I am impressed at what Kathy Miller's support group in Tucson, AZ said cancer gave them. I agree. So much of it is awful but we can find the silver lining if we look hard enough. Leroy, I am praying for a miracle. I am curious what you would do differently if you could go back to your healthy self. Not what you would change in the past but how you might be different or what you might do differently after beating cancer?
Goodnight! Jen

Sent by Jennifer in CA | 12:20 AM ET | 05-16-2008

I read your blog daily and cheer your every success!!! I wish you well, I wish you strength and most of all I wish you peace. You are in my prayers-Robin Solomon.

http://avemar.world-cancer.net
http://www.cancer2blog.com
http://www.cancerdelete.com
http://www.asiacancer.com
http://www.hotlinecancer.com
http://breastcancer.world-cancer.net

Sent by Joddy | 5:25 AM ET | 05-16-2008



   
   
   
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Leroy Sievers

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Leroy Sievers in the Ted Koppel Documentary

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