At the very top of the My Cancer Web site, there's a short paragraph, an introduction to the blog. I wrote it about a year ago, and quite honestly, I sort of forgot it was there. It starts this way:
"After that day, your life is never the same. That day is the day the doctor tells you, you have cancer."
I wrote that about six months after "that day" for me, and I got that part right. Your life never is the same. Mine certainly hasn't been. That moment of that day is still crystal clear for me. I can see the room in the hospital, see myself lying in the hospital bed wearing a gown that was too small. I can see my doctor sitting down and saying those words. His exact words were, "We found a mass in your brain." The conversation sort of went downhill from there.
But that sentence — "Your life is never the same" — only tells a fraction of the story. As a cancer patient, there are so many days that change the course of your life. Those changes usually aren't very smooth. They're more like those sharp turns on a roller coaster, the ones that whip your neck around. The first day of chemo? That's a huge change. I don't think your body ever quite recovers from those toxic drugs that are meant to save you.
It's the scan days that really determine the course of your life. There are several different types of scans: MRIs, CTs, PET scans. They all see things a little differently. But they all do the same thing. They search, they hunt. They try to peer into the dark corners of our bodies, looking for a threat.
All scan days are difficult. Waiting for the results is excruciating. A good scan day is like your birthday and Christmas rolled into one. A bad scan day sends your life careening off in another direction. And each time that happens, things seem to get worse. More tumors, more treatments. Last-ditch treatments. Untried treatments. More danger. Each time your life changes course like that, the world seems to close in on you a little more.
So yes, my life has not been the same since the day the doctor told me I have cancer. Last Wednesday, my doctor told me the scans had found new tumors. My life hasn't been the same since that day, either. I don't know how many of these changes are in my future. I keep thinking of that quote from Hunter Thompson. "Buy the ticket, take the ride." I have to admit, after being on this ride for a while, my stomach is a little queasy and my neck is getting sore. But I'm not ready to get off just yet.
I'm not ready either. I just keep setting dates for myself. I'm 26 so this is prime time for friends to get married. My new date is July 13th, my best friend's wedding. I know it's hard Leroy, but we can do it. Sometimes I think the cancer won't take me but my lack of strength will. I just hope I can keep on trucking until it's my time.
Learning that I probably can't control that is that hard part.
I am keeping you in my heart.
Sent by Laurie | 9:37 AM | 6-11-2007
Leroy. I understand. I think for me the third time around was the hardest for me. I knew way to much and that to me was gut wrenching. No one could tell me it was going to be fine..I knew what was coming. I had to really work hard to push forward. I kept thinking life is constantly changing cancer or not..However I to was not ready stop the ride. I think from the day we are told we have cancer our life is never the same. But then we learn to cherish here and now more then we ever did before and that my friend is important. The other thing is that I do understand the ride..It has twists and sharp turns. Then there are the high hills the toughest part where you get up there and we feel the bottom will fall out. The we get to the bottom and once in a while it goes smooth for a short time. and we can breathe normal for a little bit. Its then we see so many things about life..maybe its a new perspective about the ride. I to am not ready to get off..yet. So lets do the ride together. Many Prayers for your Journey
Sent by Kerry | 9:46 AM | 6-11-2007
Leroy, You said it all.
Sent by Ruth White | 10:02 AM | 6-11-2007
Leroy, I am so sorry to hear your latest news. My heart breaks for you. I know that I am suppose to say all of the things that people say to us in times like this..."you'll get thru it", "you are strong" etc..but I know that you are already aware of these thoughts. So instead I will say, we are with you my brother, we love you, and we truly do feel the kick in the gut that you have received.When one of us feels it, we ALL do. We are in this together. We love you man.
Sent by Liz Zimmerman | 10:11 AM | 6-11-2007
I've been away from internet for 2+ weeks and finally caught up with the blog last night....Leroy I am so sorry about what the scans revealed. Stephanie, I am sad you had to face new surgery/outcome also. But both of you will face your future with the same dignity and GRACE that you have from the beginning of this journey. Being with the grandkids is life-giving. I am here for you, back to visiting and sharing each day. Love to all. Sherri in Texas, breast cancer dx 4-06
Sent by Sherri Eggleston | 10:21 AM | 6-11-2007
Leroy, Well, all I can say is I'm pretty pissed off about your recent turn of events and was hoping things would have turned out differently. Love the Thompson quote. My own is the old adage, "Suit Up and Show Up", which is really all we can do - emotionally, physically - if we're going to get through. Now, a question. While I personally can more often than not be found assuming the fetal position, what is it in you that drives you to maintain the calm, clarity and downright energy (!) to write this column? Is it simply a matter of training (your journalist background) or is it your way of making sense out of the senseless? I would really like to understand this. (Of course, I would also really like to understand why I'm not a blonde with a faster metabolism and no cancer. Since you can't answer that, perhaps you'll entertain my prior curiosity?) Sent with good cheer - Susan Schwallenberg, Florida
Sent by Susan Schwallenberg | 10:23 AM | 6-11-2007
Good morning Leroy. Glad to hear you still have the fight in ya. I know your tired. It's tough to say the least. But please know we are all here with ya. Fihting the fight and doing what we have to do. I know i have said it before. Being a la rat is not something I wanted to be when I grew up but I just think of all the people we will be helping in the future and that really gives me extra strength on those days I need it. Much love C
Sent by Christine VanHoose | 10:24 AM | 6-11-2007
I hope it's a long, long time before you're ready to get off, and that you'll have many more "up" periods before then. But life just isn't fair, is it? In the past few days I posted some comments on this blog along the lines of "buck up, Leroy!" and now I'm realizing how stupid and condescending they were. OVer the weekend, I was having pain in my hip and ribs. Needless to say, I'm panicking that it may be bone mets. As soon as my doctor's office opens, I'll be phoning her, trying to arrange an appointment or scan. Unlike you, I haven't even received bad news YET...but I'm so scared, freaking out inside. So -- from now on, I won't presume to tell you or anyone else how they should feel. I'll just say I'm so sorry. I care. I wish it weren't so.
Sent by Doris | 10:37 AM | 6-11-2007
Yes, the thrills just keep coming, don't they? Add to the scans the bloodwork and other lab tests on which our futures sometimes hang too... you do have to admit we have more excitement in our lives when we live with cancer, but not necessarily in ways we'd have deliberately chosen...
It does sometimes strike me as an advanced life course in vicissitudes, equanimity, equilibrium, deepening one's roots, rebuilding reserves, and continuous letting go of expectations and images, all while holding on to the life we love. Whether we get lucky and move on for years of great health and time, or whether the "graduate course" comes near the end of our corporeal lives, I do feel it changes us each and all in ways nothing else could. Each person must weigh the value in that for themselves. I'm thankful for many of the shifts it catalyzed in my life. I hope others find some recompense for the struggle and uncertainty cancer brings to their lives. It is easier to take if you sense some quid pro quo along the way....
Sent by Sarah | 10:38 AM | 6-11-2007
My old eyes read, "It's the scan days that really determine the course of your life." as "the curse of your life."
Gasp. I reread. Phew.
It's the course of your life and I know you are queasy and anxious and full of fear. I wish I could take those feelings away for you. Thanks for sharing ALL the parts of your journey. I know I am not the only one who is inspired by you.
Sent by Robin | 11:01 AM | 6-11-2007
Dear Mr. Sievers. Your post this morning is so timely for me. I just received the results of my three month MRI from my doctor last Friday. Now I can exhale and begin to breathe normally again. The two day wait from MRI to hearing results is, as you say, excruciating. I literally hide from friends and family while I am waiting for the other shoe to drop. I am so afraid of what I wll hear and I am considered by those who know me to be a fearless person. But those two days can reduce me to a quivering mass of jelly.
And I too can remember the first day I received my cancer diagnosis. I remember every piece of furniture in the exam room, I remember the tears in my doctor's eyes as he told me, and I remember feeling the chair sway and the floor tilt. Those memories will stay with me until my dying day! And I also remember how ignorant and naive I was then. I didn't even know there were stages of cancer. I didn't know how to pronounce the medical terms that were being thrown around or the procedures that were being outlined for my treatment.
How educated I have now become!
Sent by Brenda Lynch | 11:18 AM | 6-11-2007
June 7, 2005. That was my day. I heard the doctor say esthesioneuroblastoma and then I started to hyperventilate. I don't think "grace" would accurately describe my reaction to his words.
I only had four rounds of chemo, but it was very strong and required me to stay in the hospital about 6 or 7 days each time. It has been 16 months since my last chemo treatment, but I still have numbness in my toes and fingers off and on and my right ear will ring a lot more than I ever remember. Not a big deal, but it just makes you wonder what the side effects will be in 5-10 years or 15-20 years(God willing). When I was getting chemo the choices were pretty simple - get it or risk dying. Pretty simple equation when you're 41 with two kids 8 and 10. I'll worry about the damage it may or may not do in the future. Right now I just want to increase my probability of survival. In the words of Black Sabbath (yes, Black Sabbath) was I "Killing Myself to Live"?
Included in the cocktail I was given, I had IV Doxyrubicin (my oncologist called it The Devil's Kool-Aid) two of my four cycles. I can still see that damn orange bag hanging and dripping into my body. Who would ever willingly put this kind of crap into their body? What the heck kind of a "cocktail" is this? A cocktail comes with peanuts and sometimes it is served by a pretty woman. A "cocktail" doesn't come in an IV bag delivered by a person wearing a freakin biohazard uniform. That would always astound me. The person delivering the protocol would be dressed like their next stop was Chernobyl...then they put it in my veins? Huh?
I continue to be amazed by the strength my "blog mates" document. I thought I had a rough go, but my turn in the barrel looks like a picnic compared to what a lot of you guys have been through. You are inspirational. Help keep me grounded.
Sent by Dave U. | 11:23 AM | 6-11-2007
I was building towards having my scans done, then I started feeling sick. Short of breath, heart racing, chest pain. So off to the doctors I go, and a surprise CT of the chest to rule out a pulmonary embolism.
No word yet, but now I am waiting. My original tumor was in my chest, so all of this could be from my tumor growing back. Maybe I will get lucky and it will be a small embolism. Only a cancer patient would hope for that...
Sent by Brit | 11:27 AM | 6-11-2007
Leroy, You couldn't be more right about our lives not being the same again. I actually have trouble remembering what my life was like before I got sick. My cancer and treatment has been so consuming. I also believe I'm not the same person I was before.I don't waste my time on things that aren't important to me. I can make decisions easier, my priorities are different now. I don't feel good alot of the time and I let people know not to expect much from me. I've become a bit selfish about that, but because I don't appear all that ill people don't always realize how sick I am. I'm so sorry that you will be going back into treatment again. I just finished chemo but I'm fairly sure my cancer will reoccur and this is just a break. But I welcome it. I'm not sure which is worse not knowing what to expect from treatment or knowing the routine and being prepared for it. It's too bad we will never have that innocence again. "Buy the ticket, take the ride" yeah, I've had some wild rides in my life but I don't remember buying this ticket. On a bad day once I said to my daughter Why me? and she quickly said, why not you? It hurt my feelings but I realized what she meant. With almost every other person having cancer or knowing someone with cancer, why would I think that it couldn't find me. Even without a family history of it, it's just everywhere and there is no fairness about it. I never had very good luck anyway. But it could always be worse and I'm still here for now.
Sent by Susan from Maryland | 11:39 AM | 6-11-2007
Leroy, once again you have express what I have thought a thousand times over so eloquently. This is a journey none of want to take and the scenery never gets better. I see my life through the lens of cancer no matter how hard I try not to. When my son acts who is a teenager is non communicative or in a hormonal mood I feel like yelling at him, don't waste this time we have together, but he is doing what he is supposed to do and I have to do what I have to do, be a mom and take it as a natural part of growing up. But its hard I wnat to know how everything will turn out for my family, and I don't know if I will be here for the big things, weddings babies, time with my husband, I hope I am but when you live a life through the lens of cancer, you can only hope. I am glad you are not getting off the ride yet, you are really great company!! Take the greatest care, Estelle
Sent by Estelle | 11:55 AM | 6-11-2007
Oh Leroy~you took me back to the day I found out I had cancer. After my partial-thyroidectomy, my surgeon said that he thought I was in the clear. About a week later, I went home for lunch and had a message from my surgeon asking me to call him because he got my pathology report. I immediately got a knot in my stomach, but tried to think positive. I don't remember anything he said after the words, "it's cancer--Hurthle cell--and it's rare, especially for someone your age." I have never felt so alone, confused, and heartbroken as I did that day. I tried to call my husband and couldn't reach him. I remember calling my Mom, panicked and scared; she immediately left work to come home to be with me...before she could get there, my Dad was at my front door...I finally got ahold of my husband and had to tell him over the phone...so impersonal...he didn't know what to say. Tears are streaming down my face right now...I don't want to have another day like that! In a way, I think we all went numb...I wasn't prepared to hear those words, but then again, I don't think anyone is. How can you prepare yourself for that? I am preparing myself for treatment in August...I'm preparing to hear that there's still cancer cells there (even if that's being negative)...I'm just trying to prepare myself in case there's bad news. I don't want to be caught off guard again.
I can sense, Leroy, that you're getting tired...I hope that we give you some strength to continue on with this ride...as bumpy and curvy as it can be. Just imagine us in the seat right behind you...holding on to you and holding on for dear life...screaming, laughing, and crying all the way!!! You're in my thoughts and prayers!
Sent by Tess from KY | 11:55 AM | 6-11-2007
Remember NO WHINING WHEN RIDING once the ride is over you whine all you want. You are finally accepting the fact that the MONSTER IS ALWAYS WITH US. You have to accept what you have and proclaim what you are going to do with it. My last CT scan,12years ago, showed one suspcious lymph gland, We decided to monitor it, so far nothing has changed. I know it is still there, and I proclaimed it was going to stay dormant there, So far 33 Years since treatment and I was right. But I did not change how I lived my life. I walked my Path as I thought best for me. My wife found this saying on a card the other day. I did not get the author's name, It goes: This hasn't been an easy time for you, there have been so many moments when I've wished I could have somehow spared you some of the pain, or at least cushioned the blows. But it seems that we each have our own roads to travel in life. For a while, we're on a smooth, well-worn path, then suddenly the road swerves. But you know what? I've watched you with admiration as you've faced difficulty with strength and courage, and even in those times when you may have wanted to give up, You somehow found it in yourself to carry on... and I just know you'll continue to do so. You're a remarkable person,and even though this is your road to travel be sure to look along the side from time to time, The person you'll see there, the one cheering you on, will be me.
THANK YOU FOR WHAT YOU ARE DOING FOR ALL OF US!!!!
Sent by Sam Means | 12:11 PM | 6-11-2007
Although one can blithely say "life is about change," I don't think anyone would be happy about some of them. Most of us want to work hard, get to a place we like in our lives and STAY THERE. And some of us are able to have that - but only for a while. If we don't get sick, we at least get old and frail. It isn't as dramatic as cancer, but still points in the inevitable direction. For what it is worth, I think you are changing in a most graceful and dignified way. I believe that counts, somehow.
Sent by Diana Kitch | 12:21 PM | 6-11-2007
Leroy, I wish, as all of us do, that my life will once again be normal. Too much to hope for, maybe so, but what else can you do. The fear of the unknown is there everyday, it increases greatly on scan days. I think of a quote from Rod Serling, "you are now entering the Twilight Zone." I liked watching it far better than living it. Hang in there. Stan
Sent by Stan Wozniak | 12:39 PM | 6-11-2007
Leroy, I appreciate your stamina, both mental and physical. After my first recurrence and the additional chemo that followed, I said I'd never go through that again. But now with my latests scans showing a second recurrence, I'm not so sure I'm ready to let nature simply run its course. I think it takes a peculiar combination of guts and hope and fear to try more treatment. I'm glad you are writing about it.
Sent by Allen | 12:40 PM | 6-11-2007
Leroy, Thank you for today! God bless you and continue to bless you with the words which bring us all together...sandy
Sent by Sandy Gentry | 12:42 PM | 6-11-2007
Leroy: Heart to heart, soul to soul, mind to mind. Namaste, Don
Sent by Don Winslow | 12:43 PM | 6-11-2007
For Susan S???
I'm not a cancer patient, but I was a caregiver for many years who lost my partner of 20 years in February. It's been a very tough trip, between the illnesses and having to try to move on.
I got through it the same way I still am getting through it, by just putting one foot in front of the other and knowing that whatever is, is, and worrying or obsessing about it won't change anything.
This past weekend I actually allowed myself to be hopeful and think about my future by looking at apartments since I'm selling the house. What a strange feeling, to be excited about something again. I still spend a lot of time remembering and crying, but less so than a couple of months ago. It'll never be easy but it will be easier.
Sent by Bruce | 12:48 PM | 6-11-2007
Did the Relay for Life on Friday night. I brought stuff to stay the night, even though I planned to not participate if it rained as forecast. My team captain had planned enough people to walk the entire time without me, on the chance I might not feel well. Turned out that I felt pretty good, and the weather held up, so I did stay. I walked on and off till a bit after midnight..then dozed in the team's screen tent for ~2 hours; and ended up walking the 3-5 a.m. shift with one of the women in my book group. Altogether, I surprised myself, and covered 9 1/2 miles in bits and pieces. I thought of this blog community on every lap as I passed the luminary dedicated to us. The survivor lap and the luminaria lap were very moving. During the survivor lap there were all of these people applauding around the track for us, as if we had done something beyond having the good luck to respond to treatment. The luminaria lap was done in silence and darkness with everyone from all of the teams wearing glow necklaces. The luminaria ringed the track, and were set up in the home team bleachers to spell out HOPE. My younger college-aged son was there for part of the event, and it was the first time he truly realized how many people he knows are affected in some way and how widespread this sucky cancer thing is.
I can see myself doing this again. It was a cake walk compared to the cancer patient ride.
Sent by Sheara | 12:49 PM | 6-11-2007
Dear Leroy, this is my second post, had some computer problems and don???t know if the first post went through. I just wanted to say that I again sensed your sadness when I read your blog today. I want to let you know how very sad I am for both you and Laurie. I saw the sadness in her eyes when she spoke on the discovery channel, as well as the love in her eyes when she looked at you. I can empathize with her. I am a ???Living with cancer??? spouse. It takes its toll on all. ???After that day your life is never the same??? This statement is so very true and only those living this life can understand what it means. Laurie summed it up in one sentence when she said that she didn???t remember what life was like before cancer.
I so wish that my husband would become involved with your blog, but he does not like to talk much about his cancer. I, on the other hand, need all the support I can get. I discussed his cancer with you on some of my earlier posts and want to thank you again for answering my questions about the RFA.
Be well Leroy?????????..stay on the ride and don???t get off. Always in my prayers, Sasha
Sent by sasha | 12:50 PM | 6-11-2007
Dear Leroy, Bless your sweet little buns! (I'm not sure their little, but bless them anyway!)I have come late to your blog, but NPR and the Discovery Channel opened your world to me. I lost a dearly loved sister 3 years ago to Lymphoma of the Brain. We had the "good time " for about 8 months in her 3 year battle where she was in remission but the cancer and chemo so changed her personality that we actually lost her much earlier. We lived 1000 miles apart so on a daily basis I could not do much but the phone call and the prayers which made me feel so helpless, because you know had we been living in the same city, "I would have been able to make it all better". I met a new friend a year ago. She is a 41 yo pediatrician 2 small girls undegoing chemo for breast cancer with mets to the lung. I take her to her weekly treatments, we walk together, do things with her daughter, go to book club all those things I would have done with my sister, but was not able. Maybe I can make it "all better" for her. Your buns needed blessing because there are so many of us that want to make it better for you and anyone else who has cancer. Know that we all follow your journey, admire your courage, adore your writing and only have the best thoughts and prayers for you. We also share something in common. I worked at Nightline in the early 90's. I was the publicist and traveled frequently with Ted. He had stopped smoking and than started up again. I hope he has stopped! Please give him my best. A better best friend he could not have in you! Kim Edmonds Moore
Sent by Kim Edmonds Moore | 12:53 PM | 6-11-2007
I started reading your blog after watching the Discovery special. I have a long time friend who was diagnosed with GBM last August. She is still hanging in there with treatments but her last MRI showed more tumors. We are trying to be as supportive as we can as friends, but still feel that the words we say are not enough. I will share with you the way I end all of my cards to her.. stay strong and be positive.
Sent by Tammy | 1:06 PM | 6-11-2007
Hello Leroy, I have been reading your blog for some time now. Today I meet with my doctor to go over the results of this last CT scan, were not fortunate to get our results the same day at our hospital. So it has been 4 days since I had my scan and I have tried to keep myself busy,such as looking for work(got laid off about a month ago)reading,updating my resume, catching up onthe home projects. Just anything to keep my mind off of the cancer, like you I have been on a short break and have been enjoying a somewhat normal life, and now I have to try and keep my positive thoughts that my scan results will be good and that I can go back to my somewhat normal life again. Maybe even find that new job with its new challenges.Wish you the best of luck and my thoughts and prayers are with you always.Heres to great results for both of us.
Sent by Jerry Edwards | 1:17 PM | 6-11-2007
I think we are always learning. It surprised me and impressed me that even in the very last days of my husband's life I was still learning about our marriage. On one day he looked at me and I said to him, "Okay then, I will think what you want me to think." I don't know where that came from but I guess it was needed.
Since he is gone now it is what I rely on. How would he think about or what would he do in a given situation.
I feel very much like Sam Means wrote in the last half of his entry in your blog above, I admire my husband because as cancer took everything from him what remained was such an amazing person. As I saw qualities in him that I doubt I'd seen without his/our suffering, it is with reverence to him and his life that I will spend my days. No big houses, no fancy cars, I will make something better in even just small ways because of him and who he was.
Sent by Anon | 2:15 PM | 6-11-2007
I have been a breast cancer survivor since 1986, when I was 36 years old. I had a re-occurence in 1995 and to my knowledge have been cancer free since then. I am one of your faithful readers, and enjoy reading your thoughts and those of your other readers. Last Friday was the American Cancer Society's Relay for Life in Lawrence, Ks. As I walked the survivor lap, celebrating my 21st anniversary, I was meditating on the many cancer survivors I have met on my journey. And you were one of those I thought of as I walked. Thank you for sharing this personal journey with all of us.
Sent by Judy Hollingshead | 2:38 PM | 6-11-2007
I like your statement of "put one foot in front of the other". Thank you. I needed that today.
I just like you--lost my spouse and was a caregiver. Today would have been our 13th wedding anniversary. I miss him so much.
I always read your posts because I can relate to things that you write.
Thank you again for reminding to do exactly that--one foot in front of the other and go on.
Sent by Deb | 2:56 PM | 6-11-2007
This last weekend, I attended a memorial for a friend who had succumbed to blood cancer. I last saw him alive, just one day before he passed. He was in pain, confused, but mentally alert. His life was well described by another close friend who said, "Tim made his way up from a deeper hole than many of us will ever know." Dual diagnosed as schizophrenic and manic depressive, Tim recovered to become an inspiration to all who crossed his path. As a spiritual speaker he traveled the country, helping many find the path to recovery from alcoholism and mental illness. In short, he somehow escaped from "One Flew Over the Cukoo's Nest" to one who spent his life helping others. He often said that his only secret was acceptance.
Last summer, Tim and I spent about three hours together on a sparkling Puget Sound Saturday. We sat on a friends deck, staring at the islands and sharing mutual experiences in recovery. I will never forget his words, as he described the day he was committed to his first mental institution, "I knew I was in deep trouble when I entered my room and there was no doorknob on my side of the door".
He further explained how terrifying it was as he later entered those same asylums and jails to carry his message of faith and recovery. As each successive door closed behind him, he had to fight down the repressive fear that it might not open again.
Here on your blog, we have repeatedly used the imagery of walking through doors into the world of cancer, of unknowns and misunderstoods. What we all really want is that doorknob on our side of the door. What we mostly see is that it's not there. So, we go from door to door, down incomprehensible passages, hoping, always hoping that the door will somehow open to bright sunlight. Behind that next door is peace and acceptance for those who so choose.
On a small table at Tim's memorial, lay remembrances, pictures, notes, cards and flowers. At the center lay a small brass doorknob engraved with his name. Most won't understand its presence or importance. It felt good to get it out of my pocket.
Michael Lewis Seattle
Sent by Michael Lewis | 3:07 PM | 6-11-2007
Hi Leroy and all,
I sat behind the surgeon during the initial office visit in November 2005 as he inserted the small flexible endoscope into my sister's nose and moved gently in to look at her vocal cords. No one had to tell me, after all I am nurse. The surgeon asked her to pronounce the letter E so he could watch the vocal cords move. I knew then or even before, the cords didn't look crisp, they didn't move, I could structure distortion. I knew before he told her, it was cancer.
I became detached, I could only think, how will I tell dad (he was 87 at the time). The next day, my brain was racing questions, internet searches I was ready to fight, but was she? Visits to the dr., a trach and PEG tube, consults, scans, chemo, radiation, blood work, (breathe) surgeon follow-up, repeat biopsies, more scans, canned "stuff" for food, PEG tube falls out not once but twice, and still we keep going.
I called it a rat wheel. You know that thing in the cage the hamster, gerbil, mouse, rat walk and run on all day. It is a hard "ride" and certainly not fun and definately a fact of life NOW.
That's what I do, that's what it takes. As always, I find peace and compassion through this blog.... Oh Leroy, I hope in March you go back to Hawaii, if its the same time I am there... maybe a Mai Tai???
Sent by Susan Chap | 3:08 PM | 6-11-2007
Leroy, Don't get off the ride. I know it has to be so hard at times to just keep hanging in there but as long as you can just stay on it. As the wife of someone who has decided to get off the ride and just let nature take its course it is so very hard, no more dreams of things being better, or miracles. I can understand the tiredness but to live without hope is so unnatural for me. So please know that so many of us are with you on your journey and do draw strength from you. You will always be in my prayers, that you will have the strength to carry forward. Dorothy
Sent by Dorothy | 3:24 PM | 6-11-2007
My medical diagnosis seems to mirror your own in some ways. With terminal ampullary cancer found two years ago it has been a scary ride since then.
You have inspired so many of us, even if it's just allowing us to tell a bit of our own dramas. My recent scan shows more lesions or tumors in stomach and lung apparently. The oncologist returns from her vacation soon and I'll get the details. Meanwhile, the painkillers help, even if that remedy is limited.
You've shown us how to travel along this wild journey. God Bless you.
Sent by Christopher Barryc | 3:26 PM | 6-11-2007
"That day", 6 years ago, remains so vivid, so clear and so frightening in my memory that I captured those immediate feelings and the aftermath of my diagnosis in a blog on a melanoma website. It was cathartic for me and was written with the hope that it would help others newly diagnosed to understand their feelings in a new melanoma cancer world.
I have had numerous other "That days". Some of those days were expected - I knew the biopsy would confirm a recurrence. Some were unexpected and were "deja vu" all over again especially the kidney cancer diagnosis..a second type of cancer! In an odd way, I believe that one of my melanoma recurrences possibly saved my life - with the kidney cancer I had no symptoms at all. It showed on a scan just prior to a melanoma surgery. My urologist said that by the time I had symptoms, there was a very good chance that the cancer would have metastasized.
My melanoma (currently NED)may eventually metastasize and ultimately take my life but in the short term, my melanoma recurrences(5 so far) saved my life!! Ironic I'd say since "That day" was a good day for me (in hindsight)!
Today is the day I prayed for last night; tomorrow is the day I'll pray for tonight. I hope I have a lot more "ride" left on my ticket and I hope that you do as well, Leroy.
Blessings and prayers as always.
Sent by Al Cato | 3:48 PM | 6-11-2007
Leroy, you are our friend, and we are all very sorry this is happening to you.
It sucks: you having to go through all this stuff, having days taken up and interrupted with this stuff, not be able to really plan too much, getting poked & stuck, getting dosed with poison, and made sick and hurt, and feeling like h*ll. It just sucks.
There's alot of people pretty sad with you. But we are all pulling for you, and all these invisible bloggers will be surrounding you.
Sent by Pika | 4:06 PM | 6-11-2007
I too have been away from the blog for awhile and was surprised and sad to read that the cancer is with you again. I am sorry. I started recalling your past blogs and I began to wonder how it is you could be so courageous. . As a journalist you faced so many risks in wartorn places. You had a sense of adventure, it appears, and you were never so afraid that you left your line of business. for ???safer??? places. Perhaps you felt you pursued danger rather than danger pursuing you. Now cancer is pursuing you and the relentlessness of the enemy is so clear. You are now, Leroy, showing such real courage. You can???t leave the cancer world for a safer place. To paraphrase a quote I like???.courage is simply taking one more step just when you think you cannot. I wish I knew who said it but I know that he/she must have been a soldier. I am hoping that all of us writing to you and cheering you on (while at the same time cheering ourselves) gives fuels your courage so you can take one more step just when you think you cannot.
My scans are in August (I will be a one-year survivor then). Does anyone have any ideas on HOW TO PASS THE TIME GETTING RESULTS? Entering a cave with a gallon of wine and five pounds of chocolate and without a cell phone has occurred to me. I know???.not particularly courageous!
Susan in Chicago
Sent by Susan P | 4:26 PM | 6-11-2007
When I was first diagnosed, I knew I was at "high risk" for recurrence. I started "reading ahead" to see what it's like to have mets. One lady described it as brush fires. You just keep putting out the brush fires wherever they show up.
So, when I was diagnosed with mets (immediately following inital treatment), I used this analogy and asked my doctor about some stupid vitamin or something.
She used my "brush fire" description and told me I had a raging forest fire and was asking if I should put the matches away.
OK, knocked me into place a little.
I did get the raging forest fire put out (and I do take vitamins).
Leroy, I see your recurrence as brush fires. Not that they aren't serious, but like another poster said, time to play "whack a mole".
You can do this.
Sent by Karen D. | 5:00 PM | 6-11-2007
I was envious, yet so pleased, during the Ted Koppel Living with Cancer special, to learn that you had no evidence of disease following the radiofrequency ablation procedure. Reading your blog today is like a punch in the stomach; it has literally taken the wind out of me once again. Everyone that survives cancer provides those that have it with hope. Everyone that doesn???t (or falls out of remission) reminds us of how insidious this disease is. My struggle has been going on for over two years. Every procedure takes just a bit more out of you. The major surgery I had was the worst, it disabled me, but it prolonged my life by at least 9 months. Other than the major surgery, the radiation, chemotherapy, and other smaller surgeries have each had their fair share of misery, yet more importantly, hope. That is why, as you said today, you???re ???not ready to get off [this ride] just yet.??? Well, neither am I. A friend of mine who had been fighting breast cancer for 8 years died in February. She was in her mid 40s. She left behind a husband and two young children. It was an intense and horrific struggle for her, but I think she would do it all over again to have been able to watch her kids grow older, shape their future, and provide the time for them to get to know her.
The Ted Koppel Living with Cancer special generated the impetus in me to create my own ???Living with Head and Neck Cancer??? blog. If interested, it???s good to start with the first three earliest entries which provide background on me and my disease. The more recent entries detail my daily experience with PET and CT scans, chemo, my feelings, clinic exams, and status. The URL is???
My family, friends, and even a few strangers have provided feedback that the blog helps them stay connected to me. For this I am thankful. It's one more thing that provides the support I need to keep going.
Although I don???t know you personally, I empathize with you and hope the newly identified tumors can be treated and extinguished in a way that makes sense to you. At least we got to see the end of The Sopranos. Maybe there is even another complete season of 24 in our future.
Take care and keep fighting, Ed
Sent by Ed Steger | 5:28 PM | 6-11-2007
I believe my husband keeps thinking because I look relatively well I am. My daughter kept me from throwing in the towel today, by phone. We came back from a quick weekend on the Cape and I didn't announce the Taxol dizziness and drowsiness, I just went to bed. Wow, did I ever pay for that! We had no food in the house for either supper or work lunches today. I did go to school and had 6 classes to teach, then the grocery store. What a sight. I was drenched by checkout and had 3 people offer to follow me home to bring the food in the house. My husband did show up at the store and did carry everything in. I gotta put that grin on and press through the agony of the thought of cancer plus the agony of the chemo effects. I don't complain every day, but sometimes the caregiver needs a knock on the head. My dear daughter is coming home for the weekend to help me with the pile up of spring chores so I can have a little flower garden this year. And tomorrow will dawn and I'll still be here.
Sent by Cheryl | 5:29 PM | 6-11-2007
Sheara, That is a great idea I have two Relays coming up I will lite a luminiari for this blog community...one this weekend and one next weekend. Relay is so inspiring and the feeling of closeness is so touching. This year at my county Relay(next weekend)I have the privilege,with my team, to be working on the survivor dinner. My husband and I are both 2x cancer survivors...and my manager is also a survivor....hence this was the beginning of our team..but thank God for the beginninig of Relay and the good it does accomplish for ACS... You know Leroy it was because of a Relay email I found the Discovery Special and that is how I was lead to this Blog.I hope you aren't counting our postings.This is a good day!!! this past Wed. was treatment. And as the ole timers would say "I was feeling my oats".I got some projects done...a feeling of accomplishment...Leroy this is what I hope you would feel,each time you help us all to "ponder" and encourage us. My prayer is, also that we can only give back to you what you have helped us with. Shot up till now I thought a blog was for teens (I have 7 grandchildren)and also I found NPR news boy have you expandend my world. God Bless and keep you on this journey.sandy
Sent by Sandy Gentry | 5:35 PM | 6-11-2007
Dear Bruce, I have been reading your posts for many weeks now and I am so very sorry for your loss. I have a question thats been in my heart but never had the guts to ask anyone in my position. Is this the hard part? The living with cancer part.............the waiting for the unknown..............the wondering when and how.........if there is going to be suffering...........if its going to get ugly..........all the frightening things. Is it better when its over? I am starting to believe that this is the hardest part, having to watch your loved one suffer. Does it get easier? Sometimes i think dark thoughts and wish it were over and then comes the feeling of horrible guilt and selfishness.........I am starting to think I am losing my mind..........I cannot imagine living without my husband so why do i have these dark thoughts. I somehow envy those who have lost their loved ones.............the fear is over......they can start healing. Is this normal?
Sent by sasha | 6:28 PM | 6-11-2007
Thank you for sharing your words with us, and for participating in Discovery Channel's special on Living with Cancer. It gave a voice to the rest of us. I am living with a rare form of refractory Acute Myelogenous Leukemia, and like you, realizing the difference 24 hours can have on your life as my hopes are dashed with today's labwork. It's definitely a rollercoaster. One day I feel like I can conquer the world and the next I wonder how many days are left in the calendar of my life. I'm only 26, and fighting to stay with my husband and 18 month old son. As things worsen I find myself looking at the possibility of a second stem cell transplant, and as you put it, the world seems to be closing in on me.
Sent by Amy W | 6:30 PM | 6-11-2007
You know, there's not a part that's easier or harder, I don't think. They're all hard in different ways. And having been where you are now, I think you're perfectly well within the range of normal when going through this. Don't be afraid to ask questions, none of us will think you're some awful monster. It's tough. Maybe the toughest thing we'll ever do, patient and caregiver alike. There's nothing noble about this. It's just what we're handed and we muddle through as best we can.
I had days when I was so tired of being the caretaker that I wished for the end so it would be over for all of us, and days that I was so afraid of being lonely I didn't know what to do. Our battle lasted almost 8 years. I don't mind being alone, but being lonely is another matter. And I'm still trying to figure out what to do next. I have a little money in the bank from Terry's life policy that I took out a few years ago as well as a buyer for the house, and I have a great family and friends to lean on, as well as Terry's family and my amazing co-workers (it helps that we're all medical researchers) plus this blog family. This is the first time in my adult life I've lived alone, and I'm still learning how to do so (how sad--at 42 just learning how to pay bills! That's almost embarrassing to admit, but hey, if we're being warts-and-all honest...)
In our case, I think the hardest part for me was seeing Terry sedated and in hospice for 8 days with no food or fluids given. As power of attorney, I could have stopped it, but it's not what Terry wanted. As far as I know, the pain ended when the Ativan drip started. It wasn't peaceful or spiritual or anything like that, but it also wasn't an ugly, painful death.
I miss Terry terribly to this day and always will, but I can live with myself knowing that I did what was asked of me without thinking of myself in the process.
Like I said earlier, it never gets easy but it WILL get easier. I promise. Even just 4 months out, I have fewer weepy days than before.
After my dad died in May 06, my mom said "I cry every day." I didn't understand. I do now. We have our "widow's club" every few days, and I think it helps both of us. Heck, just having a safe place--a "screaming room," if you will--like this blog is a good thing.
I really didn't set out to write a book here, so I'll close for now, but if you ever have any questions about what life is like "on the other side" feel free to ask. Nothing is too personal or off-limits when you're among friends who care.
Sent by Bruce | 7:32 PM | 6-11-2007
I am sorry that you are down but you need to know that your voice for us all in the blog is very important. I am waiting for results of my CAT scan but celebrated my wedding anniversary by drinking MaiTai(your idea Leroy) and having a dinner that made me sick afterwards but was still worth it. So we just keep on the roller coaster ride and hope that we are creating something meaningful as you are. Sometimes I think when I share myself with a patient that maybe I am giving them comfort that they are not alone and other times when I am still so weak from chemo that I can't do everything like the other nurses on my job (lifting, moving exam chairs - toes numb so difficult)I feel sorry for myself. My only hope is to contribute in some meaningful way as God has his plan and wants for me to do as this journey continues.
Sent by Vicki (FL) | 7:42 PM | 6-11-2007
Hey Leroy - Thinking of you today and of everyone here in this community. My fiance and I were having a very similar conversation just last night. Our lives changed so much when I heard the words, "You have cancer" last fall. We had all of these plans, hopes, dreams, and we still do. Things have just changed. I'm 38 and looking at a post above me from Amy W., who is only 26 and has an 18-month-old son, which touches me so deeply.
I know that feeling of being so strong one day and then waking up another feeling so frightened. Sometimes I feel like cancer weighs three tons and I can't breathe from lugging it around.
Thinking of you all.
Sent by Lisa Lindstrom | 7:44 PM | 6-11-2007
I've been doing the cancer "now you see me now you don't" dance for almost 8 years (Metastatic Colorectal Cancer). Don't beat yourself up. Yes, you are a cancer patient and yes you'll probably deal with it the rest of your life. There's not a whole lot you can do other than roll with the punches and knowing the playing field you're playing on. Take care...chin up!
Regards, JON HENDERSON
Sent by Jon Henderson | 8:13 PM | 6-11-2007
To Tess in Ky, I too have Hurthle Cell cancer. It is rare. Approximately 250 people in the US have HC. I was diagnosed in 2004 and now have Stage 1V. If I can be of any help please e-mail me. Elizabeth
Sent by Elizabeth | 9:15 PM | 6-11-2007
Leroy - I hear you. You could never imagine the crap that we have to go through. I am begging to get some treatment(at least it feels like that).
Today I called an attorney to make an appointment to get my affairs in order (at age 41!) I'm starting to think that I may die waiting for someone to treat me.
To Sasha and Bruce, Deb and Anon too I am so touched by your posts. When our youngest daugher was 12, my husband died after lung transplant (genetic Alpha 1 antitrypsin syndrome). We had known for 9 yrs of our 17 yr marriage that he would die young. Yes, it's normal, sasha, these feelings of dread and darkness. I will never forget those things. When yr partner passes away, there is the relief that he is no longer in discomfort, pain, sorrow. But that is not the end of the darkness. I thought it would be easier than it was; after all, we all had time to prepare, right? It was still really hard--this person who was at the center of your world is gone and never coming back...very hard to watch our girls grieve too. Days can seem like months and years. I remember during the first year, wishing i could fast forward thru to the time that supposedly is supposed to "heal". It's a real individual journey, this one. BUt as Bruce says, you just put one foot in front of the other and go with some kind of flow. Whatever happens at your husband's END, trust me, you will not have to deal with it all alone. And you will find within your deep love for him the compassion and courage to walk with him through it. Then you will cry and cry and then go on. I kept a daily journal for the first year after my beloved died, it helped me so much to write. This was before BLOGS!! contrib uting to this blog would work, as it is working for you now. I remember after a particularly long day at the hospital, my husband again thanked me for being there and said, "You made my day". I looked at him and said "You made my life." No matter how many years pass, you will never forget him and never stop loving him, no matter who dances into or out of your life. You will find your own rhythms and movements. Just as Bruce is looking already to the future. Life just keeps marching on, dammit, and we can not stop that. Love, Sherri in Texas. Breast cancer dx 4-06
Sent by Sherri Eggleston | 10:40 PM | 6-11-2007
I'm so sorry to hear your news. **shaking head**
Man, the whole deal asks a lot. Living with it day to day, the scan days, the "treatments" almost as bad as the cancer itself.
People try to buck you up by saying you're lucky to live in times like this when there is so much medicine available. And I've never thought once "Wow! Yeah! I *am* lucky!"
It bites. All of it. Take care of self. Wishing you all good karma.
Sent by BB | 11:06 PM | 6-11-2007
I've been reading, but haven't been able to think of anything helpful to say. I am one more among many who has you in my thoughts and prayers, with you in your efforts to perservere. I share your disappointment in the sudden turn of things. I wish your remission could have been longer. And as someone living the cancer experience, I can relate very well. Hang in there, and know that there are very many of us with you all the way.
Sent by Lilly T. | 11:55 PM | 6-11-2007
My Dear Leroy, Thanks to your facility with words and your ability to rise above your fear and queeziness and uncertainty and fatigue long enough every day to post on this blog, I find I have very little to say on the subject of living from scan to scan, or this terrible adventure we are all on. You have expressed most of what I am feeling, and if you have left anything out, others who post here cover the rest. And somehow, that is such a comfort to me right now. At this moment in my cancer journey, I find that my children and friends and those I love most and want to spend my time with simply do not "get" what we are up against - those of us who are living with cancer, whether we have it or are caring for someone who has it- and I cannot at this time find the energy or even the desire to try to explain it to everyone. It strikes me that the best thing I can do for myself and for my family right now is to send them all to this site, and of course, make sure they all have a copy of 'Living with Cancer'. Bless you, Leroy, for finding the strength, somwhow, to make this blog happen; and to all of my brothers and sisters in Cancer World, I say, with Tiny Tim, "God Bless Us, Every One".
Sent by Katherine from San Juan Island | 11:59 PM | 6-11-2007
I've never contributed to a blog before, but somehow I feel compelled to do so here. I saw Living With Cancer two days before undergoing a partial nephrectomy to treat kidney cancer. In the month since, I've almost felt guilty that my cancer should be cured by the surgery alone, especially after seeing and reading of your experiences, and after witnessing two good friends undergo treatment for breast and prostate cancer. It seems as if the prominent incision on my side is a free pass to the end of the race, allowing me to win without having to experience the rigors of the course.
Then I read today's blog about the scan experience, and am reminded of the "hypodense mass" on my kidney that was "too small to characterize" in the previous CT that identified the other mass that was my cancer. Despite the opinion of the doctors that the small mass is probably nothing to be concerned about, I can't help but wonder what information the next scan will reveal. Hopefully it will be good news, unlike the life insurance denial letter I received today that categorized me as "uninsurable" due to my diagnosis of cancer.
Thank you, Leroy, for the insight, the honesty, the sense of community. You've got many friends with you on this ride.
Sent by Andy | 12:41 AM | 6-12-2007
Cheryl, some times the hardest thing to do is to slow down. I just turned 25 and this is a lesson I am trying to learn. I tend to think that I am supper woman and forget that I have limits. Don't forget that stress is a toxin to your body too. Take time to slow down. I don't know about you but the chemo is exasting. I did too much today it is hard to know when to take things slow or put them to rest even if it's just getting through the daily chors. They will still be there tomarrow.
My oncologist number one stratigy for me is to mantain a low stress life style. I started my last round of treatment yesterday. Two more weeks to go. I have been cancer free for a year now, but I stil feel as if the black cloud is folowing me around waiting to rain. Maybe it's because just as I was healing for sugery I started treatment. What will it feel like to feel "normal" I don't think any of us will ever feel the way we once did, but as long as we can still feel I am greatful.
You are all in my thoughts. Warm wishes
Sent by Melissa H. | 1:22 AM | 6-12-2007
In yesterday's blog, Leroy wrote -
"It's the scan days that really determine the course of your life. There are several different types of scans: MRIs, CTs, PET scans. They all see things a little differently. "
Boy do they ever "see" things a little differently! In 2005 according to a CT scan, I had mets to the liver but in 2006, after a PET scan, I was told that the lesion on liver was GONE! Doctors were excited! So was I!
My most recent CT scan of last month informs me that the lesion on liver has grown - slightly. What? Questioning the Dr, I was told that "the scans don't always see everything the same way." So the PET scan (without contrast) didn't pick the liver mets up...and gave me "false" hope. (I could share more than one of these types of stories since my original dx in 2000)
Reading all of your stories and experiences with all the hurtful and debilitating treatments just breaks my heart.
I honestly feel that this whole cancer thing is a big guessing game when it comes to the nasty treatments. It really does feel like the world is closing in just a little more.
So, for me, I decided it's NOT the scan days that determine the course of my life, it's not a chemo oncologist practically screaming in my face how stupid I am and how I'm going to be DEAD in 6 months if I don't allow him to stick the poison into my already sick and hurting body - It's God and I'm thankful to know that my life and times are in His ever capable and trustworthy hands - even though I don't understand it all.
Thank you for letting me unload - I'm really trying not to feel resentment and anger against the medical establishment right now.
Sent by Vicky | 5:45 AM | 6-12-2007
Leroy - I read your blogs every day and watched you with Ted Koppel. I felt compelled to write and tell you that you're in my thoughts and prayers. I'm so sorry about your latest news. I don't talk about my cancer a lot so reading your blog and everyone's comments to you helps me sort out a lot of things in my mind. For that I'm grateful to you. I was diagnosed with breast cancer in June 06 and lung cancer in August 06. I had both surgeries and am doing good, however, as I've said to many people and I don't think they understand, "I'll never be the same". Blessings to you Leroy.
Sent by Nancy Conner | 11:53 AM | 6-12-2007
DAMN I haven't checked in lately but I listened to the podcast on the metro this a.m. and your news was a shock. Hang tough, you can do it.
Sent by Julie | 1:12 PM | 6-12-2007
My mom's 86 and she's not ready to end the ride yet either. A lady at work today saw the fight against cancer as beautiful and life affirming and I think she is right. Mom and I have been in the trenches together with her cancer for 10 years. I'm so amazed by her courage, and yours, especially on those scan days. Thanks for you words.
Sent by Katie | 1:39 PM | 6-12-2007
Oh Elizabeth--thank God I found you!!! I have been traveling this road alone (well, not without family and all of you) but without knowing ONE person with my disease. I have SO many questions to ask you...so much I want to say...I am in tears right now b/c I feel so fortunate to have stumbled upon this blog and ultimately, upon you!!! I would LOVE to be in e-mail contact. If you don't feel like posting your email on the blog, please email at: email@example.com
I don't know if you've read my posts from early on, but I was diagnosed at around 18 weeks pregnant with my precious Sophia at the ripe old age of 26. Oh, how I hope to get in contact with you...my mind is racing, my heart is jumping for joy that I can finally talk to someone who knows what I'm going thru.
And to you Leroy, this is such a good day for me...thank you for creating this blog!!! Elizabeth, I look forward to hearing from you...I know I don't know you, but thank you so much for responding. Prayers and thoughts are with you all!!!
Sent by Tess from KY | 2:02 PM | 6-12-2007
Dear Tess in KY,
I want to thank you for writing and I found a blog on 6-9-2007 you had written offering support for my plight and I appreciate your throughs more than you know. I have been writing every day for the past dew days, but the blogs are not showing up for some reason, and I do not know why, I thought it was because they were not important enough to print, but I do not want to beieve that! I will e-mail you at your personal email address, but in the meantime, thank you for acknowledging me and to my surprise that you have been following my blogs. I just wonder where they are.
I hate to keep repeating my story, and feel it must bore people to tears if it is coming through on your computer and not on mine, but it is complicated and a horrifying story. I am trying my best to keep my spirits up, but it has been difficult of late, but your note was really uplifting.
Thank you from the bottom of my heart.
Sent by briana | 4:17 PM | 6-12-2007
I recovered great from an unexpected triple by-pass April 5th. I was UP until April 30 when diagnosed with Esophageal Cancer (down). CT scan and MRI showed no cancer in any other places (up). OOPS! 5/18/07 Pet scan showed it Metastatic on liver also (down). What a rollacoaster this is and just begining.
Thanks to you I know about RFA which may be the key to allowing me to eat later on and maybe some hope to live a little longer. THANKS!
Just came back from a week visiting my daughter in Seattle. She is a OSU Design grad and has an little art studio/gallery called "Blank Space". I had to take a week vacation off from cancer and regroup.
Clinical trial - Chemo - starts this week at James Cancer Hospital OSU.
I pray for you and all of your readers and hope that I can be as strong as you. Your blog has been a great help! Reading "Tuesdays with Morrie" has helped too. Love, laugh and ENJOY LIFE everyday!
A new member of a hellish society, Richard
Sent by Richard Davis | 6:58 PM | 6-12-2007
I have never respected anyone more than I respect you.
Sent by Linda Bongardino | 10:23 AM | 6-13-2007
Hang in there Leroy. I so much appreciate what you are doing, even though my cancer (prostate) treatment seems a "walk through" compared to yours. I am getting so that I only want to talk about it to people like yourself. So, please concentrate on the next bit of "good news."
Sent by John | 1:42 PM | 6-13-2007
Dear Leroy, Just got that 2nd diagnosis of new tumor also, brain...this one 'not operable' and going to try radiation and chemo. My first one- 3-1/2 yrs ago involved 2 craniotomies in one week and a gamma knife 18 months later. This one is one the other side of the brain, on my 'motor strip'. All I can do is pray! God is good ALL the time.
Sent by Judy | 3:59 PM | 6-13-2007
I don't get scans anymore. I know the tumors are growing, so what? The blood tests will tell me what's happening to the inoperable tumors in my liver. I don't take chemotherapy. Chemo didn't shrink my tumors, although it made me sick and miserable. Ralph Moss and many others tell me that chemo may shrink tumors a little, but it's not a cure, and the tumors always adapt to the chemo, they get bigger and you die. Just because chemo might shrink a tumor, there's no evidence for my cancer that chemo extends life at all. But there's plenty of evidence it makes my remaining life unbearable. I'm not wasting another day getting chemo or scans. Besides, after a certain point, the radiation from the scans and the poison in the chemo can CAUSE cancer. Who needs that? One day, my liver will fail, I will turn yellow and die. Until then, I'm staying out of hospitals, I'm staying out of chemo clinics, I'm staying out of MRI waiting rooms, and I'm enjoying every minute of life with my incurable disease. I applaud Orgeon's Death With Dignity laws, and I campaign for California's Compassionate Choices Act. I don't want death, but when it comes, it should come with compassion, dignity, humanity. Not tubes, needles, and the smell of a hospital.
Sent by Kevin | 7:31 PM | 6-14-2007
Hi Leroy, I read your blog dated 6-13-07 and I know while in the midst of fighting cancer you have to look for small pleasures in life and sometimes food is a great part of those small and simple pleasures. My husband is fighting kidney cancer that has metastized to the bone and he too has to have monthly infusions of Zometa to strenghten bone tissue. In your blog you spoke about the types of foods you like and many of them are sweet foods. I am writing to you to ask if you have ever read the book "The Cancer Recovery Plan" .....it is a medical book published by one of my husbands doctors, Dr D. Barry Boyd. He is a Dr of Integrative Oncology Medicine at Greenwich and Yale New Haven Hospitals. The book is a 200 page paperback published by Avery. The purpose of his book is to maximize peoples' response to chemotheraputic agents and through diet and exercise, build your strength and minimize your side effects to chemotoxic agents. Dr Boyds book also explains the connection between the food you eat and how it effects the hormones in your body...ie. refined sugars set up a high insulin response....which in turn ...sets up inflamatory response...and also Insulin stimulates "growth factor hormone". This environment causes both good and bad cells (cancer cells) to proliferate!! Dr Boyd explains that tumors are "highly metabolic cells" that require alot of energy to multiply...... and eating a diet of allot of simple sugars is setting the perfect feeding ground for cancer cells. My intentions are not to take away your "simple pleasures" while undergoing chemotherapy and radiation treatments ....but maybe by reading this book you can take some simple steps to maximizing the effects of your chemo and maximize your health and therefore your strength to minimize your side effects!! I know you are a great writer and therfore a voracious reader ....the 200 pages in this book may empower YOU to do something yourself to fight your cancer ALONG with the pharmacutical agents and the Doctors on your "team"! I know that when I read this book ....I asked myself and our health practitioners ..."Why isn't this required reading for ALL people diagnosed with cancer? And why not on the same day the diagnosis is delivered"!! At the very least... it would give a person some control in their life at a time when every thing feels like it is spinning out of control.... and it can empower you at a time when you feel powerless! Let me know what you think.....it surely can't hurt to read this book and empower yourself or even to follow a healthy diet to maximize your chemo treatments and minimize your suffering of side effects!! Best of luck to you Leroy! BIG HUGS! kate