Leroy, I won't tell you what I think that you should do about taking a break from chemotherapy, however, I will suggest that you CAN use the powerful visualization that you'd talked about using covering wars. I understood from your blog about it that you find it too difficult to do in this circumstance because you are sure that the cancer is going to cause your death. Only time will tell if that is true. In the meantime, however, you don't need to win the war, just this particular mental battle. You don't need to visualize yourself cured and living happily ever after, just your body gaining strength from the respite from drugs, you gaining strength for the next round, and you filling that precious time with whatever you enjoy and cant do while undergoing treatment. I know that you have the tools, and you just have to believe that they'll stand you in good stead again.

Sent by Nancy K. Clark | 10:40 AM ET | 10-26-2006

Leroy,

I've been reading your post with great interest for months now and have never written but today I had to drop you a line and encourage you to keep fighting the bastard cancer.

My father, mother, neighbor and favorite aunt have all died of cancer and Im waiting my turn in the wings. Your courage and insights about the disease and how it has affected your life are very inspiring.

Please know that so many people look forward to reading your encouraging and truthful words each morning and don't stop fighting the bastard cancer.

Best wishes for a speedy recovery.

Sent by Jerry R. Steuerwald | 10:42 AM ET | 10-26-2006

Leroy,

I think we all share your cancer dilemma. I know I have had to make some unbelievable decisions since I was diagnosed in July. It seems the decisions only get tougher as time — and the cancer — progress.

I share your view regarding cancer as an intruder. Since my diagnosis, I've often felt like my body is no longer my own something that was once so familiar has turned into a sinister stranger.

Personally, I feel the cancer is sometimes more than an intruder—it has taken my body, my mind, and to some extent, my life hostage. I now have to schedule, organize, and plan my events around the cancer.

Considering the damage cancer inflicts, I think it's only natural to want to level the playing field by annihilating the cells that have kidnapped and tormented my body.

Sent by Michael Everett | 10:44 AM ET | 10-26-2006

That's a tough decision. I'm sure your doctors will help you make the right decision for you. I finished ten cycles of chemo/Herceptin followed by three more cycle of Herceptin. I was supposed to have Herceptin until the end of this year but my Mugascan came back a little sketchy so my doctor decided to stop my treatments. Even though my PET scan in July was clear I was very apprehensive about stopping. It seemed strange not going at first, almost like I'd been deserted. Now two months later and I'm starting to feel "normal," except of course every time I have a little pain I wonder if the cancer is back. I guess thats just part of the program now.

You are in my prayers!

Sent by Sherri | 10:49 AM ET | 10-26-2006

I look at these tumors are not part of you, me, everyone with cancer. They are invaders and must be attacked! Take a break, enjoys the holidays, and start new year with a bang!

Sent by Sara | 10:54 AM ET | 10-26-2006

I am constantly overwhelmed by the decisions we have to make. Although I love having some control, each time a decision is made I wonder about making the wrong choice and impacting either longevity or quality of life. I found a surgeon to do a resection that my oncologist was not recommending. I change oncologist and the new one doesn't seem to offer many options, should I have stayed with the old ones who seemed more engaged but were only focused on chemo? During my last appointment I had four agenda items and the doctor "complied" with all of them but she didn't have anything to add. I would hope with her expertise I wouldn't always be guiding the discussions.

Sent by Dona | 10:56 AM ET | 10-26-2006

That concept of the cancer as intruder vs. "part of me" is a mixed bag. Our bodies grow the cancer! Some feel that all cancer is a result of physical (spiritual? emotional?) imbalance in the body/mind. How do you love the normal cells and hate the cancer? I guess those of us suffering from cancer (actually from cancer TREATMENT) can answer that one. I just finished four months of chemo. Though treatment and all its horrifying side effects were scary, I am amazed at how vulnerable I feel without its protection. So I concur with your feelings. Fearing that without the power of chemo, the cancer cells become emboldened! Not easy choices — perhaps, Leroy, you could compromise and take shorter breaks between the rounds. Isn't it peculiar how cancer alters what you hope for, what you fear, what you question? God and the angels be with you when you must decide. Thanks for so aptly capturing the mental side of this picture.

Sent by Sherri | 2:39 PM ET | 10-26-2006

I finished the 12 doses and took the requisite break... in two weeks my CEA doubled from 340 to 700. I had hoped the extra days were going to let me feel better more like my old self. I didn't even get that... in the final days of the break three and a half weeks total) I had only ONE day where I felt better. Next time I think I will stay on at least Avastin. I went back on 5fu/lev and Avastin treatments. I cried on the way to the chemo room... but once there never let them see you sweat!

One of the ladies placed next to me was receiving her first dose ever. It was gratifying to talk with her about what to expect... what to do... the support groups available. She had breast cancer so was going to have different side effects. One very sad one was the gorgeous thick wavy hair she would loose by her third dose. (She appeared to mist up at the thought) I held her hand while she cried about the chages in her body to come. Her husband came with her and seemed to be very responsive but also had that deer in the headlights look (he had forgoetten the battery in his hearing aide was dead... sometimes I wish I could just turn it off).

Maybe this is part of God's plan... I am here to help people feel safe (I have been an RN for 27 years... will be 28 in December). So bring on the chemo kill those cells... but I will be there to help my fellow cancer patients... and together we will beat this... maybe not in our life time, but maybe for our kids or grandkids.

I am sorry you are in the gray Leroy... but you have brought it all (cancer and side effects) into the bright light of day... we thank you for that everyday!

Sent by Cherie Brown | 2:48 PM ET | 10-26-2006

Dear Leroy,

This link will direct you to some good information about chemotherapy breaks.

Sent by Janet Turcotte | 2:50 PM ET | 10-26-2006

It's so hard to bear some of the responsibility in making treatment decisions for ourselves. Hard, scary and overwhelming. But I wouldn't have it any other way, like in the old days when the doctor said "this is what you're going to do" or when breast cancer patients woke up from surgery not knowing if they still had a breast or not. That may have been easier on the patient in some ways, since the responsibility was on the doctor and the doctor appeared to be omniscient.

I consider my medical team to be detectives and problem-solvers and expect them to be knowledgeable in the latest research so that they can share that with me and I can make decisions based on all of their information. Before this, I never even considered that people have "styles" in relation to dealing with medical issues, but for me, knowledge gives some little sense of control.

Best of luck, Leroy.

Sent by Maggie | 5:15 PM ET | 10-26-2006

I share your sentiment regarding hoping the cancer cells are having a rough time. I have metastatic colon cancer (with liver mets) diagnosed in May 2006. I had surgery in June 2006, and started my chemo regimen on July 25, 2006. I am on Avastin plus FOLFIRI.

My side effects have been minimal (some hair thinning, dry mouth, and hand-foot syndrome). Although the chemo has not adversely affected (with terrible fatigue, nausea, diarrhea, lack of appetite, etc), while the cytotoxins have killed normal rapidly dividing cells (hair follicles, mucus membrane, taste buds lining of GI tract, etc.), prior to my first CT scan, I had certainly hoped that the cancer cells in my liver were catching cytotoxic hell.

The results of my September 25 CT scan showed that the liver tumors were smaller than on my last scan (May 30). I met with my liver surgeon the next day, and he believes that he can do a successful liver resection. I must finish the rest of my chemo (through December).

I've completed 8 chemo cycles and have 4 to go (at least of my current regimen). I will need to be off the Avastin about 2 months prior to my next surgery. My oncologist says that he will probably order a couple of treatments beyond December just to cover me prior to surgery (which may be late February/early March).

I certainly look forward to the few weeks or month (or whatever the time period may be) break from chemo in preparation for surgery. I certainly miss having food and drink taste the way I know they should taste.

In making a decision to take a chemo holiday or not, I think ultimately one should let quality of life issues form the basis of the decision. After 12 cycles, do you continue with the toxins that beat both you and your cancer cells down, or do you give your body a reprieve and just enjoy life on your own terms, even if for a month or two?

Sent by Minora Sharpe | 5:21 PM ET | 10-26-2006

Leroy, I don't want this to come across as angry or insensitive, but why don't you consider writing about something other than cancer for a day or two? Write about the cheesesteaks, your family, the changing leaves, your favorite things to do. I do realize that there are always tough decisions to be made. My mother was diagnosed with breast cancer nine years ago, then with melanoma a year ago, and then further tests (and surgery) showed that the breast cancer returned — this time in her right lung. We've had many very, very tough decisions to make over the years, and lots and lots of waiting for CT and PET scan results. As hard as things were and continue to be (especially this year), most times WE DO NOT TALK ABOUT THE CANCER. We read magazines together, watch TV, go to the movies, visit relatives and go out to our favorite restaurant (after she had TPN for two months earlier this year and was unable to eat anything by mouth, it's so nice to be able to go out to eat with her again!)

The need to make tough decisions will never go away, but how about enjoying the in-between times?

Sent by Vira | 5:25 PM ET | 10-26-2006

Leroy,

Like you, Leroy, I have struggled with how to name cancer and designate the relationship the disease has with my body. In fact, I blogged about that specific issue. (see http://rtfax.blogspot.com/2006/09/unwanted-journey-day-0298-driving-away.html).

I can't say that I've come to a conclusion yet that fully works, but I have discovered a therapeutic process that offers some promise for people like us. Its called the 3-2-1 Shadow Work Process in which one works through all three persons - 3rd, 2nd and 1st person. In other words, you Face It in 3rd person, Talk To It in 2nd person, and finally Be It in 1st person. The idea is that the process will help you to reverse the potential damage done by repressing aspects of the struggle with cancer.

You can search the web for more material on the 3-2-1 process, if you like, but I think it offers one reasonable way to address the issue.

Sent by Don Spencer | 5:28 PM ET | 10-26-2006

I have had 19 cycles of taxol/carboplatin/gemcitabine. I did have one short break (2 weeks) because my bone marrow konked out but tumor markers started rising immediately. It looks like I may soon need another break as my white blood cells and platelets are not rebounding despite Nuelasta, Arenesp etc. Im very afraid of any break and if given a choice would continue with the chemo. Since were not talking about a curable cancer I look upon the chemo as lifelong maintenance akin to insulin, dialysis etc. Not fun but better than the alternatives!

In all honesty the chemo and its side effects have gotten easier to bear over time. It has become routine to schedule life around chemo. Even my son asked if a given weekend would be good for me to host his 9th birthday party.

Also I find a certain comfort in going into the infusion unit. At least I'm doing something active to keep the "beast" in check. On another note so many of you have subtle (and some not so subtle) complaints about the medical team that I just wanted to commend mine. Im being treated at Dana-Farber in Boston and have found the staff to be the most amazing group of people that I have ever come across. Everyone from the volunteers, receptionists, medical assistants, support staff, nurses and doctors are warm and caring I find it incredible that they can give so much of themselves, especially knowing that many of us will not be cured! Ive never had to track down results (good or bad). I have Ct scans every 5-6 weeks and am automatically scheduled with the oncologist for the following day in order to review the results. I cannot imagine a finer institution or a more committed team to face this ordeal with!

Sent by Anna Michal | 5:30 PM ET | 10-26-2006

Well, I'm writing this from the treatment chair at the clinic, with the results of my PET scan from Monday fresh in hand, and a set of IV bags full of expensive drugs. More gray, no black or white from the PET scan. At best, the report is "stable" — no change from the scan done 1 1/2 months ago. After 8 treatments, still some metabolic activity present in liver tumors and no further shrinkage. So another four rounds of treatment are in order, this time substituting Oxaliplatin (I've maxed out on this one with numb feet and hands - only hope its not permanent) with Irinotecan (CPT-11). So we start the process over again and plan on another scan after 4 more treatments.

Anyone out there with experience with Irinotecan — I'd love to know more from a patient on how they handled the side effects from it.

And I did get my deluxe burger after my scan, so at least I got the treat.

Sent by Bob Maimone | 5:31 PM ET | 10-26-2006

Thank you Leroy for giving us so much of your energy. I have been reading your postings with great interest this last month. Today I just needed to write in and to wish you well.

Most days I read your post and ponder them, the issues of anger, fear, loss and hope all resonate with me as my cancer cells seem to be regrouping.

As a scientist I can't but see the cancer cells as being part of me. They did not invade me but they are mutating and expanding within me. Unlike a virus, bacteria or a parasite, cancer will kill its host without spreading to other organisms or infecting others. It makes no sense. It is most certainly a battle within. I love life and Im not done living the one I have. I'll cling on to the end. I'll continue to do what I must to stop my cancer or to hold it a bay.

You seem to be a man who has always sought challenges, I too have taken the most challenging roads and now I find this unexpected turn is by far the most challenging.

Thank you again for your blog. It has become part of my survival journey.

Sent by Susan Morris | 1:09 PM ET | 10-27-2006

I have been reading your blog and would like to share some of my poems with you.

Tears

In the wee hours of early morning

I am awaken by some unknown force

My eyes are welled up with tears

The reason for this is unclear to me

Was it a bad dream that I can?t remember

Or was it the aches and pains my body endures

What ever it was the tears flow only to be stopped by time

My emotions have been so close to the edge for so long

That this must be my bodies way of clearing itself

I do feel calmer and more at ease

Whether the tear ducts just needed clearing out

Or my body needed to express the pain is unsure

But I think I can rest for a little while longer

And face the new day renewed

If you do take some time off enjoy it to the fullest.

Window to the World

We see the hustle and bustle of the world

We hear, see , talk and if we are lucky we listen

We each have our own schedules and patterns to follow

Time is of the essence and there never seems to be enough

Until, and thank God there is an until, we are made to take time

To listen to the quiet, the peace , that is within us all

Only then do we appreciate our window to the world.

In closing.

Take Love With You

As we physically immerse ourselves into our lives

We build our existence into the realm of the world

Our fragile being must be nurtured

The body and soul working in unison

To create the harmony for us to survive

We must sensitize our lives to the love we possess

Because it is this love that we take with us

It is this love that makes us who we are

And ultimately it is this love

That will give us everlasting peace

Sent by Pam Pace | 1:13 PM ET | 10-27-2006

Dear Leroy. I'm happy to hear that your tumors are shrinking. Regarding the chemo break... I had a total of 28 weekly chemos (three different kinds). I was also given a choice of taking breaks. I chose to take one week off after every six treatments. For me, it was the only way I could do it. Breaking it up into segments seemed manageable. The way I looked at it was that the cancer would let its guard down during the week off and start dancing around in celebration. That way when we hit it after the break it was in full party mode and vulnerable. The place I went for treatment is into all of the holistic stuff and I don't eat any refined foods or sugar. When I was doing the chemo they wanted me to sugar up on chemo day for the same reason. Get that cancer dancin' and hit it with the chemo. By the time chemo day rolled around I was so ready for a cinnamon roll I looked forward to the chemo! Whatever it takes I guess. Also, I always thought of the cancer as a part of me. I made peace with it as far as letting go of the anger toward it, but definitely made it clear that it was a part of me that I wanted to be done with and put behind me. Wishing you strength, fortitude, and laughter between the tears.

Sent by Patricia Buchanan | 1:15 PM ET | 10-27-2006

Dear Leroy,

My husband was dignosed with stage four lung cancer a year and a half ago. This is how I most often think of his cancer: that a crucial part of him has forgotten its true nature — which is to be a specific, highly specialised, unique and beloved part of Bob.

He is being cared for by many people through diverse means, including oncological care by a compassionate, intelligent team, healing touch treatments from his sister, and many forms of prayer.

One of my ways of caring for him is to "hold conversations" with those cancer cells, urging them to remember their best, original nature to mutate back toward life, letting go of their greed and devouring growth. Nobody has ever told me that cancer cells can only mutate in negative, harmful ways. I choose to remind them that there is much to gain from a return home.

He will be taking a break from Avastin soon and there is fear, of course, but also a celebration of and tenderness toward the body that has hung on so long, working against incredible odds in the face of cancer and the harsh chemicals that attempt to limit it. For me, I keep saying to those rogue cells, "See what youre missing? Come back, join the work, be a part of this wonderful specimen of life. It can't be done without you. In your true form, you are indispensible. As cancer, you are only committing suicide."

I know I am not the one who is ill. Maybe if I were, I would only be able to think about destroying the cancer, making it suffer as much as it causes suffering. But what I feel mostly is a deep, deep sorrow for the lost beauty of a healthy body, the damage left in its absence, and a wild hope that transformation and healing will occur.

Sent by Ceese Stickles | 1:20 PM ET | 10-27-2006

Leroy,

I do not know your situation but my husband is on course to get 17 straight chemo treatments and high dose chemo with full body radiation followed by stem cell rescue with no breaks. So all I am saying is.... it can be done. If you want more details I would be happy to respond. Thanks for writing! You echo many of the thoughts my husband and I have. On a lighter note my husband is going as Dr. Evil for Halloween (given the small list of bald Halloween characters). Happy Friday!

Sent by Amber | 10:40 AM ET | 11-01-2006

Hi Leroy, glad that something is working and share your concern about the down time and how all the good achieved might be lost is there any possibility that there exists a "Chemo Lite" that will keep pressure on the demons until the docs are ready to go back to full blast? Like heating a cylinder of water, it takes a lot of energy to heat it from cold but not too much to bring it up from lukewarm. Just crazy thoughts but one never knows.

"Writing is a socially acceptable form of schizophrenia."

Sent by Jim Street | 10:47 AM ET | 11-01-2006

Dear Leroy,

In December 2004 I was diagnosed with Hodgkins Lymphoma. Luckily, we caught it early, it is a highly curable type of cancer, I had health insurance, and I was treated at an excellent cancer center. I also went to an acupuncturist, herbalist, and shiatsu massage therapist to heal my body from the effects of chemotherapy. I am a professional dancer, and continued teaching and performing throughout chemotherapy, even after losing my hair. Due to all of these favorable conditions and the outpouring of love and support from my community, I never doubted that I would survive and thrive. However, the whole thing was surprising (as it always is!!) because I grew up eating organic and vegetarian, never smoked, drink very little, and besides a moderate dose of stress, worry, and anxiety, lived an anti-cancer lifestyle.

Then I married and moved to Chile with my Chilean husband. It has taken over a year and a half for us to establish our U.S. legal marriage here, and in the meantime I have no health insurance. A few months ago I paid out of pocket for a routine checkup scan, and surprise, there is some kind of tumor on my parathyroid. And here I am far from home, far from my loving family and community, and no health insurance, and no super advanced cancer center. I was scared and sure I would die, or bankrupt my family. So, I did something I never thought I would do, I started having sessions with a psychic healer. Because I have no health insurance and was terrified of going through chemotherapy without my family around me, I chose another route of healing. I am convinced that we are responsible for our own healing processes. I'm sure I'm not the first person to suggest to you the connection between mind, emotions, and body. Leroy, ever since I first read your blog months ago, I was shocked at how negative your tone is!! I do not believe that you will ever heal unless you find something beautiful about yourself, this world, and your existence in it. It sounds to me like what you want more than to heal, you want recognititon of how unfair your situation is, how much it sucks. Yes, it's horrible, it sucks, I feel so sorry that you have to go through such pain and suffering. But I dont believe that you really want to heal yourself. All the chemotherapy will not heal you if you do not make some attitude adjusments. I read your blog and I feel sucked dooooowwnn by your negativity and self pity. Instead of focusing so much on destroying, hurting, causing pain to your tumors, try to find some technique to send love and healing energy to your body. The tumors are not sentient beings. They will not respond to your commands of "DIE!" But your immune system, your body, you ARE a sentient being. If you consciously send yurself love and healing messages, you will receive those messages. Your tumors cannot feel. You can. There are many respected and accredited yoga centers around this country that offer books or CDs with meditation techniques for love and healing. On excellent resource is a place called Yogaville in Virginia. They have a website with contact information. Love yourself, love your body, heal yourself and your tumors may shrink in the process.

Sent by Sarah Wigman | 11:19 AM ET | 11-01-2006

Vira, I'm sure Leroy talks about things other than cancer in his daily life, but this is his CANCER blog. His audience comes here expecting to read about cancer. But more than that, Leroy likely uses his blog (and writing in general) to work through tough issues. I don't think cheese steaks are his most pressing concern at the moment.

Leroy, I have metastatic breast cancer and have also been told that I can take a break whenever I want to or need to. That's a heavy responsibility to give to a patient. Women in my support group have gone on chemo holiday, been well for a period of time, then had tumor markers rise or a progression. After the initial shock and devastation, most get back into the system and start again. I'm not sure what I would or will do. This disease forces you to make many difficult decisions, and sometimes there is little light to guide you. And sometimes you are the first to walk a certain path. In my case, I thought I'd never agree to be in a clinical trial, yet here I am: only the fifth one to sign up.

I've found that whenever I'm faced with a difficult decision in treatment, I come to a deeper understanding of what's important in my life. Of course, that doesn't come without a lot of mental wrestling, weeping, praying, staring at the ceiling, and talking it through (or, in your case, writing it through). I wish you peace, support and guidance as you go through this very hard decision-making process.

Sent by Ellen | 11:40 AM ET | 11-01-2006

My wonderful brother in law (an MD) early on made the offhand comment "carpe diem," causing me to label my cancer as the Carp Within Me. So now I have a name for it, and I have an identity for the enemy.

Sent by Tim Andersen | 12:22 PM ET | 11-01-2006

Leroy, congrats on the good "gray" news Wednesday, and thank you again for a wonderful post here. So many of us are holding you and your journey in our hearts, and wishing for the very best for you.

Sounds like you do have a difficult decision ahead, and I trust that the right thing for you will come to you.

What to call the cancer, how to name it, how to think of it, is such a challenge, and, as a fellow cancer patient, I can understand your questions. Like many others with cancer who have posted on this blog, I struggled with this question, and then found some images that came to me, and worked. I blogged about visualizing the cancer earlier this month on my personal blog. (http://dahlborg.blogspot.com/2006/10/visualizing-cancer.html)

Basically, seeing the cancer as enemy and waging a battle doesn't work for me. I talk to them, and tell them that their continuing presence threatens my life. I guess I am asking for their cooperation in some strange way. I visualize the cancer cells skipping and dancing toward a beautiful sunset, as I wave and say good-bye. (They look a little like Dorothy and her companions skipping down the yellow brick road some days, when there aren't too many of them.) As I wave good-bye, I also say to them cheerily, "apoptosis," because I had read somewhere that word refers to normal cell death. Then I discovered that cancer cells aren't able to die "normally." That led me to wonder if they can learn.

Some of the images shared in this post by other readers strike me with particular poignancy as each resonate with our personal struggles with this disease. I suspect that it's not so much a "right" answer as one that works for each of us.

So, thank you for sharing your questions and your answers and your struggles. You enrich all of us with your sharing and vulnerability.

Sent by Lynne Dahlborg | 1:14 PM ET | 11-01-2006

Recently read Kay Cordell Whitaker's words about the healing tradition she learned in Latin America and share it vis a vis your search for how to regard the cancer in your life right now. She was trained to seek a win-win solution where the condition (in this case, cancer) gets what it needs to be able to happily leave, and the host gets what they need to support best health. I have heard others speak of asking the cancer what it needs or wants to impart before leaving. When I think of my cancers as the catalyst for something useful, even if it reminds me how precious a normal day is, I hope I am helping its role be complete so that it can depart in peace and let me mend while keeping the insights gained from the journey. I offer this in case it has any value to you or the community involved in this blog.

Sent by Sarah | 1:54 PM ET | 11-01-2006