It's funny how we all seem to think — and say — the same things. A number of you wrote in over the last day or so with the same thought. You can get used to the physical part of cancer: the pain, the nausea, all of the symptoms of cancer and its treatments that beat up our bodies. When I say "get used to" I don't mean that it ever gets easy. You just learn what's coming, and how to get through it.
It's the mental part that's the toughest. That's where the beast does the most harm. You learn tricks to lessen the nausea, but how do you get past the depression, the anxiety, the fear? Those really are more painful than the toughest round of chemo. It can be almost paralyzing sometimes. Surrounded by friends and loved ones, you can feel alone. On a beautiful day, the world can look pretty dark. You want to go do something, even something simple like a short walk, but sometimes making your body take that first step is just too hard.
It's the mind that keeps us awake at night. We worry. What will happen next? Will it be painful? What will they find in my next scans? What the heck is happening inside my body? There's no easy solution, no easy way to soothe that voice in our heads.
I think the only thing we have to fight the mental demons with is will. Sheer willpower. It's easy to say, "Oh, just pick yourself up and move on." Incredibly hard to do sometimes. But in the end, that's what we do. We make our feet move, we force a smile, we push the fear and the dark thoughts out of our minds so we can focus on something else. We persevere.
The medical community is making great strides in cancer research. New drugs, new treatments that will attack the tumors and kill or at least damage them. I have no doubt that in the coming years, there will be all sorts of new things to keep the cancer cells in check. But there's really nothing that can help cage the beast in our minds. Except for us. And that's a lonely fight sometimes, but a fight that we can't walk away from.
Will power can even be an expression of faith, believing there is a way to forge on. Leroy, forge on!
Sent by Dale Budslick | 5:38 PM | 2-14-2007
I feel like I live my life in six month intervals. With that first "six month" prediction and now ongoing. I've recently had a scan that looked good so I can hope that I'll make it another six months. It is now almost 20 months since I was diagnosed and I'm not complaining but will I ever get past looking at things in the short term?
Sent by Dona | 5:46 PM | 2-14-2007
Have we heard how Ruth is? I have been wondering how her surgery went and hoping that maybe someone in her family had an update for this blog. My thoughts have been with her.
Sent by JoAnn | 9:28 PM | 2-14-2007
Just like Dona, I live in 6-month intervals. It's been 7 months since my diagnosis of advanced lung cancer so I'm on my second 6 months. If I make it to July 19th, I'll have beaten the 50/50 odds of living a year.
Your blog has been a godsend to me. You describe exactly how it feels to have advanced cancer in a way that I can't seem to muster.
But I have a question: How do I keep a positive attitude when all the doctors look me in the eye and tell me I'll die sooner rather than later?
Sent by Kathleen | 2:55 PM | 2-15-2007
Leroy, you said, "But there's really nothing that can help cage the beast in our minds. Except for us."
Basically, that's true. However, there's a lot of help out there to assist us in our fight with the mental side of cancer.
There are support groups, both on-line and local. Techniques, such as Mindfulness, Meditation, Yoga, are available to handle that mind paralysis. They do work!
Dona, we can all relate to your comment about the "short term" outlook. The trick is to use that "outlook" to your advantage. Live the rest of your life in the moment, in the present. The "scan looked good"! That's enough for now, it's good — don't ponder the future, it's not here yet.
Sent by Don Winslow | 2:59 PM | 2-15-2007
Hi Leroy and Dona,
Dona looks at 6-month blocks. I look at days. Yesterday and today, we've been hit with a major snow storm. I live in an Upstate New York city and my street is still snowed in. I was so happy to be able to get up to be able to shovel my walk and then hike the 2 miles to work. Maybe slower than usual with a few more aches and pains than most but I was able to show up and do my job. I've been up since 5 and am ready to do the whole deal all over again. I live with the ravages of what the treatment did to my body but I still chug along. I often say to my husband, "All of my days are good days, even the ones that suck!" (sorry NPR)
Take good care Dona and Leroy. My thoughts will be with you today!
Sent by betsey kuzia | 3:01 PM | 2-15-2007
It's not just will power, but also a willingness to open up to some more of what's out there: that collective energy I can feel in my running group, moving forward, even if I can't keep up with them for very long the green color of new grass that's growing because it's been unseasonably warm the end-of-day light through the walnut grove out my office window now that there's light until 6 p.m., that sideways light of winter the wonder of that new bit of music, even if it's a 20-year-old song, and how intense it is as it plays in and between my ears an old friend's giggle, just like when we were in high school the intensity of spices and exploring a bit of Indian cooking and on and on. What I mean is, living isn't always doing, maybe some of living is simply experiencing and taking it in, whatever that "it" may be at any given moment, just being. It's taken me years to figure that one out, me the doer, but that discovery is allowing me to live better, somehow, and relax a little, appreciate those wonders. There are so many of them.
Sent by Linda Northrup | 3:07 PM | 2-15-2007
Leroy - I just started subscribing to your blog... My wife was diagnosed w/ rectal cancer in October. 33 years old. Not supposed to happen. In light of her diagnosis I went to have a swollen lymph node examined - diagnosis CLL - I'm 40. It's been a strange couple of months to say the least.
Never having been particularly sensitive your blog has really helped me understand what both me and my wife are going through. She's got her first post-chemo/rad CAT scan today and is terrified that it will be bad news. Your comments yesterday really helped me to get my head around how she is feeling.
All I can say is thanks... it's a lot cheaper than a therapist!
Sent by Tim O | 3:21 PM | 2-15-2007
Leroy, thanks for identifying the hardest thing to deal with, our own fears and anxieties. I feel most of them are tied to my own efforts to stay alive, to stay with my loved ones as long as possible, to try to do anything possible to avert dying as long as I can. Many of them have to do with concerns if I will accomplish everything I came here to do, or if, at the end, I will see my life flashing before my eyes and have regrets about what I left undone.
Sometimes when I hear a really heartfelt song, I feel something greater than myself. When I witness some simple beauty of nature, I have a sense there is something more. I am not trying to convert anyone to a religion. I am just feeling like in this body and mind, I am like a bird in a cage. When I sometimes experience something beyond my normal, every day thinking, I get a feeling that all is well in the world. My body and mind may not be telling that, but it feels like peace overtakes me when I stop fighting all the demons in my mind.
I wonder if other people get little flashes of peace. I think the person who mentioned the practice of the breathing exercise in the last week, "I am... at peace," probably has flashes of that.
Don't get me wrong, I don't think we should just give in to our physical or mental state, no way. But just like I need sleep, I need to have an inner space where I can rest from the struggles. I bet many people have a way they get there, a walk, music, being with a loved one. If not, when you get to your wits end, just try to find it. That is usually when I just can't fight it anymore that I relax enough to come near that experience of acceptance or contentment.
Thanks again for all this sharing. This is really a treasure.
Sent by Allan | 3:33 PM | 2-15-2007
Dear Leroy, I have not commented much before, but now I will — I am a nurse and a cancer "survivor" with lots of experience with the psychological part due to work with cancer patients. You are not completely alone — just look at all the others here who share this remarkable journey with you. You get to the computer everyday to write to everyone. I hope you are getting adequate pain relief, and at least offers of help in dealing with the inner emotional pain as well. May God bless you and keep you.
Sent by Rachel | 3:35 PM | 2-15-2007
Leroy — I call this the ulitmate mindgrinder. Some months back I wrote an email to friends and family about my wife's own physical and psychological battle with the reoccurrence of her breast cancer. I'd like to share it with readers of this blog — because it helps to get this out of my system and thus helps me be a better caregiver:
The Ultimate Mind Grinder
This past Tuesday was big day for my wife. She went to Georgetown Hospital, to 5 North, for chemo, herceptin and zometa — the triple cocktail — and it was also the day to find out how well her new port was going to work. Well, the port turns out to work fine. Thank goodness.
The port makes it so much easier for her to take all the "anti-freeze" they need to dump into her each week. One week it's just herceptin — the miracle cancer drug. If it's just herceptin then the whole infusion process takes about one hour and there are no real side effects to deal with. The next week it is herceptin and chemo (taxotere) — a 3 hour extravaganza that includes blood tests. And once a month - it is the triple cocktail of chemo, herceptin, and zometa. Zometa is designed to help with her bones stay as strong as possible.
This week — this past Tuesday, as I said above, she had the triple cocktail. I can tell you that on those Tuesdays she gets chemo, we can count on the following Thursday, Friday, and sometimes Saturday to be a bust. She will have blurred vision, maybe some nausea, some constipation, some diarrhea, perhaps be a little weak or fatigued, her sense of taste will be "off", and she probably wont sleep very well. These immediate, temporary, but recurring side effects usually fade during the weekend, but it is very tough knowing every 14 days for three days she will be dealing with these side effects — for as long as she is on chemo — for which there is NO end in sight so long as it keeps on working and her body tolerates it.
As I said the chemo is working. The skin disturbances we first saw early in the summer have disappeared entirely. That is good. And, so far they haven't come back. That is also good.
But are they gone for good? Did the chemo wipe out the little buggers out for good? No one seems to know. So she is left with the decision — keep getting the chemo to try and keep the shit at bay and deal with all the side effects — loss of hair, brittle nails, and a host of other physical, psychological, cosmetic side effects... or take a break — let the chemo side effects fade (like maybe her nails will "heal" enough where she could indulge herself with a little nail polish — a "no no" for now) and spend all your time wondering if the sh*t is about to come roaring back.
That is why I call this the ultimate mind grinder of all time. No break mentally from this sh*t even if the meds give you a physical break. How she does it — I don't know. As my brother said, "She is so much stronger than you, me and the NY Jets combined."
Last night she had some mean stomach cramps. She was weak and nearly doubled over. But this morning she seems better. She slept last night and so far the cramps seem gone. Maybe we are over the hump for a week now... hard to tell... you never know... all I can tell you is that if anyone ever deserved a break from this nonstop mind grinder — it is her.
Sent by Joel Widder | 3:38 PM | 2-15-2007
Leroy: We have missed you for the past six weeks. Husband Burge began hurting something awful in December and had major surgery Jan. 12 to remove his rectum and as much damaged tissue as possible due to too much radiation. Like yesterday's post said, they had no idea what they would find until they got inside as he was in too much pain to even exam.
I have wondered all along how your radiation turned out but it will take all day to catch up on your wonderful comments.
I guess we are "losing more slowly" and they say the surgery was a success, at least he can walk again ... when he finally manages to get to his feet. The depression has been terrible! On more than one occasion, he has wanted to give up, but for the sake of his two sons, he keeps fighting.
Today was our 26th anniversary ... we hope for several more, but going into surgery, the doctors had to evaluate if "it would be worth it." When I told the surgeon I thought we had done the right thing, his answer was "there isn't a right thing, you just do what you have to do. It was try or die in unbelievable pain. At least horses can be put down." What a choice! No wonder there is depression and anxiety in the decisions of cancer. You might do better in Vegas.
Sent by Nikki | 3:47 PM | 2-15-2007
Dear Leroy, your Valentine's Day comment was right on point. Exactly one year ago I was diagnosed with 4th stage lung cancer. My oncology team estimated my survival time to be 8 to 10 months. I battled through 6 cycles of chemo plus a clinical trial drug. By July I had lost 24 lbs and every hair on my body, eyelashes included. Physically I refused to give in to the disease. With the support and love of my wife and children, the countless casseroles from my extended family, the phone calls of support from friends from the past, I battled back the beast. Slowly I gained back the weight and the hair. Eventually I was able to walk up to 2 miles a day with my dog. I still have continuous pain and fatigue but I deal with it. The mental part of it is a daily GRIND. Some days seem to go by so slowly and sadly. The longer I live past my "expiration date", the harder it seems get mentally. I shared Christmas gifts with my children and New Year's Eve champagne with my wife. I watched with excitement when my son read his acceptance letter to college. Today, Valentine's Day, I sent my wife roses! It's these victories over cancer that enables patients to grind back the daily depression. I know that eventually I will lose the battle but I'm not giving up the fight. I plan on being at Fenway Park on April 10 for opening day! I will also be attending my sons High School graduation in June! 8 to 10 months? Hey cancer — Kiss My Ass!
Sent by Ron Hamm | 3:47 PM | 2-15-2007
Leroy, you are talking about that 3 AM conversation with yourself ... pondering possibilities of what next? Good? Bad? And having our worst fears actualized. But then, nothing we can conjure in our mind comes close to reality, especially in the fear department. There is that adage, "What you resist, persists." So, I concentrate on my best outcome, the end result I want and imagine that fully and completely. Call it wishful thinking, but it works.
Sent by Pat Zalewski | 5:02 PM | 2-15-2007
I haven't had cancer, but I've been frightened, depressed, and anxious before ... extremely. I wonder if a pinch of acceptance would help? I don't mean go to bed and stay there, but rather cut yourself SOME slack. After all, your energy levels are different, you don't feel all that great, and the cancer is assaulting you emotionally. Would there be any value in being very gentle with yourself, loving yourself? If it were your child with cancer, how would you treat that child? Can you care for yourself in the same way? Just a thought.
Sent by Diana Kitch | 5:17 PM | 2-15-2007
Again you hit the nail square on the head as you elaborate for us "copers." The first time I was close to cancer, I was 17 years old. After exploratory surgery and diagnosis of metastasized pancreatic cancer, my 59-year-old dad lived 2 months. I generalized in my youthful innocence that cancer equaled imminent death. Now I'm 54, a cancer "survivor," and think how amazed my dad would be with advances in cancer treatment, knowing that people live longer and more successfully than before. I finished 8 months of treatment a few weeks ago and it feels very peculiar to be free of that — is cancer growing little by little somewhere in my body while I get complacent!!??!! I had a dream 2 nights ago that I had an abdomen scan and cancer had metastasized from my cervix and uterus into the organs further up. It was so real. Does anyone else out there ever have that? Thank you for listening Leroy and all bloggers.
Sent by Sherri Eggleston | 5:19 PM | 2-15-2007
You certainly do have a hard one, advanced lung cancer is not for the faint of heart. Actually no cancer is. Hang in there, put on some good music on, get some fresh flowers, and enjoy each day. I have your name on my computer monitor at home and at work. I will pray for your strength to increase each time I see it and those doctors — we need them to have a long overdue breakthrough.
Sent by Irene | 6:15 PM | 2-19-2007
Right on, Leroy! You couldn't be more on target. Do whatever it takes to keep your spirits up. For example, eat a lot of chocolate today. Its an endorphin enhancer and good medicine. Happy Valentines Day!
Sent by Marilyn | 3:39 PM | 2-20-2007
Dear Leroy who battles with the beast!
How do I manage the mental parts of cancer? How do I battle the beast? I battle the beast by confronting the enemy of my life which is pain and death. The worse case scenario of cancer is that I will die of it. I deal with that anxiety by realizing everyone dies and so I am not above the laws of nature I will just die of cancer while others die of something else. Bottom line..we all die! I cope then with that anxiety by purposefully setting a goal to live each day the best I can! That is sooooo much fun. I see the sunrise, the clouds, the faces of the kids I teach.
Carpe Diem is the philosophy of the cancer people. Last opportunity to douse the anxiety of cancer and it's mental big time...occurs in the middle of the night when I awake and I am so afraid. I am afraid I will die of cancer and I then recognize everything I have done to fight it (surgery, chemo, radiation, checking in on Leroy's blog). I then go back to my original premise...none of us come out of this alive. We all die. I have done everything I can to maximize my chances of spending more time HERE with the wonder that perhaps there is more beyond HERE! That is so lofty a thought that I find sleep. I find a balm to soothe my mind so troubled by CANCER.
Sent by Susan Paprocki | 3:41 PM | 2-20-2007
Thank you once again for your post today. I lost my father last week to cancer...I was with him the last week of his life, and came back on Sunday night so I can resume the battle for my sons cancer. Yesterday, I just sat down and thought, I'm tired... I'm tired of playing this cancer game. I just want it all to go away. I haven't picked myself up completely yet, but your post says it all...we persevere. Yes, we do, and yes we will. Thank you for reminding me.
Happy Valentines Day
Sent by Rhonda | 3:44 PM | 2-20-2007
Hi Leroy - This has nothing to do with todays post (thank you though...it was wonderful as usual). I took the time today to write to my oncologist's nurse to thank her for her timely phone call to me to report the positive results of a CT scan. This catastrophic illness sometimes turns us into self centered people and we can forget about what swirls around others lives. All the nurses, techs, etc. that take care of us during our many appointments also have to deal with sick kids, transportation failures, medical emergencies, etc. of their own but we don't always think of that when we are sitting on the examination table while they do their thing with our bodies.
The staff at my medical center treat me, without fail, with grace and humor. But what happened to them in the morning before they left for work? Did their car not start? Did they discover they were out of bread so nobody got a sandwich for lunch? Did they discover that their pet was seriously ill and had to be rushed to the vet?
I don't know....even though they deal with sick and frightened people every day, they are always the same and so solicitous of my well being. Nobody comes in the examination room and says "oh my God....my beloved dog died this morning." Its always "its good to see you..."or something positive. My hat is off to these folks who come to work every day to do their best to save lives. I urge all of us to take a moment to thank them.
Sent by Ellen Macaulay | 3:50 PM | 2-20-2007
Happy Valentines Day, Leroy
Its a great day in Rochester, NY. We have lots of snow and I feel warm and fuzzy and I'm sending some warm and fuzzies to you.
Sent by Gail Hunsberger | 3:55 PM | 2-20-2007
One year ago I spent Valentine's Day in the oncologists office learning that my brain tumor "had shown some signs of activity." With my head on my husband's shoulder, I lamented the fact that the coffee shop had forgotten to add a shot of peppermint schnapps to my latte. We left the office feeling a bit beaten down, knowing that once again we were going to be the family with the mom who has cancer. Six weeks of radiation later and an absurd amount of casseroles later (my children will forever run from any food that had crackers or potato chips as toppings), I am considered stable. I know that there is no good day to hear bad/difficult news about your health, but it would have been much more appropriate if my appointment had been on the 13th...