Good Days, Bad Days

On the bad days, I get tired. That's one of the side effects of the chemo: You just feel worn out. I try to fight it and lead as normal a life as possible. But some days, one thing — just one thing — is all I can do. One business lunch, a trip to the office, something like that. Afterwards, I'm just beat. I hate that.

I used to walk a lot. On the good days, I go down to the park along the Potomac River and walk five miles or so. Can usually do it in just a little over an hour. But on the bad days, I know I'll never make it that far. My chest feels tight; I just don't have the wind I used to. On the bad days, just walking a couple of blocks can be exhausting.

It's not sleepy tired. A nap really doesn't solve the problem. It's more just physical exhaustion. I tell myself that it's just my body, using its resources to fight the disease. I hope that's true. But there are times where I lie down for what I think will be a short nap and wake up hours later.

But it's more than just being physically tired. You get tired mentally. You get tired of fighting sometimes. Tired of telling yourself it will be OK. Tired of telling your friends that you're fine, and acting like it's true. Just tired of dealing with it all: the doctors, the shots, the pills, the cancer.

OK, so much for feeling sorry for myself. There are good days, too. Those are the days when you feel like yourself. When your body can do all the things it used to do. When the cancer's not weighing you down. Those are the days you treasure.

It's funny — the hospitals try to prepare you for all this. They give you notebooks of material, there are books and Web sites and meetings... you name it. One of the problems with the books is that they have to be written for all cancer patients. And we are not all the same. Some of you have written in to this blog talking about cancers I've never even heard of. I'm pretty sure you hadn't, either, before the diagnosis.

But we all react differently to the cancer, to the treatments. So the books will say things like "you'll be lethargic, or have plenty of energy." "You'll have no appetite, or you'll be famished." "You'll sleep most of the day, or you'll have insomnia." Sounds pretty much like life to me.

Good days and bad days — that's what our lives are made of.

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I want to thank you for sharing all of your thoughts and feelings during your fight against cancer.

I am currently dealing with my father's cancer and have been for the past three and a half years. It is and has been the most challenging time for myself, my dad, and my family.

Reading your blogs and listening to your commentary every Monday has been very inspiring and has helped me in coping with this much much more. I can DIRECTLY relate to your stories. It's funny how, regardless of the type of cancer, we ALL (family and ill ones) go through the same motions and emotions. The blogs have helped me understand my dad a little bit more, I (and my family) tend to get frustrated at times with my dad because we want him to have energy and not sleep so much. But we forget that his body is exhausted and he really cant handle it. I don't think it is a bad thing for us to feel this way, in the end we are just trying to look aside and "forget" he is sick and see him better, but we later realize he is sick and he is making the best of it. Your blog has helped me realize this and more, but mainly it has helped me personally get through my touch days and face my dads illness each and every day a little better and a little stronger.

I am so scared of so many things, but most of all is losing my father to this "monster".

Thank you again!

Sent by Cristina Gonzalez | 8:59 AM | 7-11-2006

I heard your story on Morning Edition. So much has changed since my "terminal" diagnosis and my decision to not continue with experimental treatments. What I currently need most is to know others who are surfing this ride. To hear how others strive to live a "normal" life and to share what I'm learning. I appreciate your work.

Sent by Skyanne Houser | 9:31 AM | 7-11-2006

I am a breast cancer "survivor." It has been five years since my treatment. I had the surgery, chemo and radiation you are undergoing and had all the same fears. At the same time, I think that it was probably tehbest thing that happend to me. Sounds funny, but it made me appreciate life so much more. Like the couple with the marbles you spoke about, there is a ceremony to my life now. Every day this side of dirt is my mantra. People often think I am joking when I say it, but it is my compass. Life is so much sweeter. Choices I make about how I spend my precious time and how I decide to deal with problems are so much simpler. If and most likely when, the cancer returns, I don't want to regret making the best use of these days while I still have strsngth, health and some time on my side. God bless you for sharing your story with all of us. We cancer patients concur with your comments and observations and applaud your courage and generosity in sharing with the world. You are in my prayers... prayers for peace and wholeness whatever happens.

Sent by Tina Kerkam | 9:32 AM | 7-11-2006

Hello there, Leroy, and all you wonderfully brave people out there.

It was pancreatic cancer that took my mom twenty years ago, before the Web and blogs. She was so very brave, although at the time I was too full of fear and pain to realize it.

She was born in 1900 and until she was seventy-two, I always thought she was the same age as my dad, not five years older!!! She was very angry when I learned the secret, and her comment was, "It isn't anyone's @#@#@#@ business how old I am!"

Her hair had turned grey years before and of course she colored it. I remembered her with dark brown, light brown, reddish brown, auburn, and every shade in between. After her diagnosis she stopped using the packaged Clairol, and it was the most beautiful shade of silver grey.

And then, after the chemo period, her new hair started coming back in the original color of her childhood — an embarassment to her! It was such a curiosity to all of us when I realized that I had never seen her REAL hair color in all my life! It was a bright golden red! My dad told me that's why he fell in love with her... and she said she had always hated the color— Go figure!

Too late for my mom but in the past few years I've learned about a mushroom that is very effective in cancer treatment — has been in use in Japan for more than 20 years. It helps with the side effects from the chemo, and to help build the immune system. The polysaccharide Protein Compounds activate macrophage and killer T-cells.

There are many Agaricus Blazei Murill mushroom products available, but I know of only one that is pure, highest quality ABM from superior cultivation and stringent standards, grown in Taiwan— without any contaminants, and each packet contains 135mg in a granular form to mix with hot water.

I mention this because so many people are finding help with this product. Sloane-Kettering is doing scientific studies on the ABM, and finding it effective.

Sent by Margaret Grant | 9:36 AM | 7-11-2006

My husband has Stage IV esophageal cancer. I can speak for those loved ones in the caretaker role.

Sent by Cynthia Harbaugh | 11:19 AM | 7-11-2006

Mr. Sievers,

Thank you for this blog which I recently discovered after reading about it in a newspaper while on vacation last week. I immediately showed it to my husband telling him to read it if he wants to know what I'm thinking and feeling. I too am a member of this strange and, unfortunately, not so exclusive club. As much as those close to me are interested and try to understand what I'm going through, I haven't been able to convey it quite as articulately as you!

In the early fall of last year, at age 44, I was diagnosed with adenocarcinoma of unknown primary site after a routine physical (I though I was in the best shape of my life). Basically a mystery cancer that has metastasized but not known from where. The most likely primary sites are pancreas, colon, stomach and less likely, breasts and ovaries. At diagnosis, I had multiple leasions in my liver (largest: 5.5 cm), 2 on lungs, 1 on ovary and some sprinkled throughout the periteneum. Prognosis is grim; 6-9 months without treatment, 9-12 with and less than 5% chance of 2 year survival. So far I'm at 9 months and have been lucky since I responded to chemo (less than 40% do). I take an extremely strong 3 drug regimen because, since the nature of the cancer is unknown, I must get drugs to address all of the possibilities. After 13 cycles it appeared that tumors were confined to liver only and those appeared necrotic. So after my chemo on 4/24, I was given a break. My oncologist said that this break could last from 2 months to years. I started feeling like myself again, my hair started growing back and life became normal. Unfortunately, my break lasted only about six weeks. My tumor marks started rising immediately and a CT scan showed a new liver lesion. So back on chemo as of 6/19 and every 3 weeks thereafter, until it stops working or my bone marrow gives out. My heavy duty regimen's biggest side effect is attacking blood cells - after a while the "booster shots" and the transfusions can't keep up so I can't get chemo. The other major side-effect is peripheral neuropathy in my hands and mostly feet. At its worst I can't feel my feet and must use a cane - I've fallen a few times. Luckily I can still drive except on the worst days and I'm getting a handicapped placard, which should help, as, on some days, I can't walk very far. On good days I can do 2 miles around the neighborhood in about 30 minutes. Go figure. On good days I still look perfectly healthy (except for the bald head). As my oncologist said: I'm the healthiest really sick person he has seen. Now at least I can eat whatever whenever I want (i.e., JUNK) and have no guilt, just pure pleasure.

My biggest (and for the most part only) regret are my 3 kids: ages 6, 8 and 10. It breaks my heart that I will not see them grow up and that if I don't exceed my prognosis my daughter (6) will probably not have very many recollections of me. The days that are good (which are most, at least in my new realities) I just try to live normally: lots of snuggles, carpooling to sports/activities, cooking family dinners, keeping the house up to my usual standards, reading stories and squeezing in a few family vacations to our favorite spot. These mundane everyday tasks of a stay-at-home mother are what i fight for. Things that used to frustrate me before diagnosis (fussy kids, sibling issues, long hours behind the minivan, etc.) now give me a reason to go on and fight this mystery cancer!

Thank you and the other readers for sharing your most personal thoughts. It really helps. Good luck to all!

Holly

Sent by Holly Michaels | 11:37 AM | 7-11-2006

Your blog is a real inspiration to me, a lymphoma survivor. It helps me remember the importance of being thankful for the good days, eating well, thinking positively, staying healthy and showing my friends and family how much they mean to me. I went through 6 rounds of chemo and will never forget it, as it was probably the hardest thing I ever had to do, though I knew I had to do it to survive. I believe very strongly in the mind-body connection and, in retrospect, see many connections between a very unhappy time in my life and the lymphoma.

Sent by Larry Benfield | 11:45 AM | 7-11-2006

Hi Leroy,

I am starting my chemo tomorrow. Originally the treatment plan was to do chemo and radiation, but the hospital cannot find my previous radiation records, so in the meantime they'll start me on chemo alone and keep looking. My best friend is taking me because I don't know what to expect, this being my first treatment. I've had chemo before, but I was a lot younger then. Do you get nauseous? How long do you have to do your chemo? They want to try to shrink the tumor before they do surgery, because right now surgery is too risky, the tumor is too big and too close to my aorta. Do you have more good days or bad days? Please let us know in your next post, I'd like to know more about your medical condition. I know its frustrating as hell to want to do so very much, but not physically being able. Hang in there.

Sent by Ruth White | 11:47 AM | 7-11-2006

I read your posts everyday. I miss them on the weekend. Thanks for doing it on the good days and the bad days. I experienced the cancer trifecta. First, surgery with 2 weeks to recoup, then 6 weeks of radiation, plus 2 week long infusions of chemo. They all felt like bad days. If I actually accomplished taking a shower in a day?s time, I was one good-smelling girl who felt like she had climbed Mount Everest. Although soap and hot water couldn't really take away the "I smell like I'm cooking" smell that radiation leaves with you (you did say nothing was off-limits). It is incredible how your priorities can change so drastically when you are fighting for your life. I mean it makes sense that they would, yet I was completely stupefied that they did. Before cancer a simple shower was just a daily routine. I never gave it much thought. Now I enjoy every one that I get. I went so far inside myself during treatment that words were hard to find and even harder to utter. I kept telling myself to make the most of each of those days because they very well could have been some of my last. Yet, when people would talk to me about their "normal" daily trials I would feel myself start to just stare right through them, nod from time to time and think to myself "I could care less." Yet, I certainly didn't want to keep having the conversation about what was "going on with me." I just really wanted to be a good cancer patient even though I didn't know what that meant. I was trying to find "lessons" and the "gifts" of cancer from the countless books that well-meaning friends sent when I couldn't even find my way through what was happening to me. I was so afraid that if I told those around me how I felt or let my anger and sadness out that they would leave. Some did leave and others stepped forward. My best friend put her life on hold for 6 months just for me. "Who does that?" I asked her. She simply replied "I do." She didn't have to, but that is what makes her so special, so courageous. I love her all the more for that because I needed her desperately and even though I couldn't tell her that then, she already knew. Did I mention how smart she is?

Sent by Missy | 1:20 PM | 7-11-2006

I have been reading this every day since I first heard that you would be keeping the blog. I'm in round one, diagnosed with bilateral breast cancer in January, and just finished an eighteen week chemo regimen last week. It's amazing to me how much of what you write is so spot on to my experience, even though Im in the stage when chasing it away for good still seems possible. I was astonished to find that seeing my now bald head with no hat or scarf causes an almost universal first reaction in strangers — and I can feel it across a marina parking lot. It's fear, pure and simple. They get over it in a moment or two, usually, but its so palpable I dont even need to see their faces.

And I know just what you mean about balancing trying to be well with having a life that still contains its old pleasures — perhaps its just that I dont want to believe the glass of wine or the steak tartare is killing me.

Anyway, what you are doing here is extraordinary, and I am so grateful.

Sent by Leigh Hough | 9:43 AM | 7-12-2006

I'm yet another cancer survivor. And like you, I'm starting to dislike that word "survivor." I prefer WARRIOR. Yes, I'm a cancer warrior. It better describes the fight we all fight. It even sounds more aggressive than survivor, suggesting a more engaging role. In one of your articles you said you believed a good attitude would result in a better outcome. A fight would result in a better outcome. Absolutely! Have you ever played a tennis match (or any sport) without a fight? All throughout life, it's all about our attitude, how we choose to see things, how we choose to react, how we choose to think. And yup, some days are hard. I was once a very decent athlete, but cancer surgery has changed my body in ways that....well....I've been given the opportunity to try new things, I'll say. I try not to dwell on that. When I'm having an off day, and perhaps dwelling on it or feeling angry about limitations, it helps to be honest and answer those "how are you" questions more honestly....like "I'm OK, if I don't think about it." Yup, I can't dwell on it or I start feeling sorry for myself.

I'm a breast cancer warrior. I lost my older sister to the disease, and my younger sister was diagnosed this year. I have an appointment scheduled for genetic testing, which probably isn't necessary at this point. I suspect more surgery will be in my near future. In a sick way, I get excited when I get to go a whole year without surgery. Cancer sure does change our perspective. And like you, I think it changes in all ways positive.

I enjoy your articles, your honesty and humor. They also give me strength. Keep your sword and shield!

Sent by Carol Eagan | 2:05 PM | 7-12-2006

Listen to how many of "US" there are! I've been reading for a couple of weeks now....some of my daily spiritual moments! I used to be impressed and overwhelmed when I'd go for treatment and see so many people, so many different faces all the time - all on a similar journey. It was an odd sort of comfort then, and, hearing all of you now, it is a source of strength for the day-to-day ups and downs. I used to call it "chemo tired" when I had days where just sitting up was taxing. I'm 3 years out from chemo now and my endurance has finally returned to a level that is satisfying. I wish you all well - keep up the strength and the living well!

Sent by Linda Domeier | 2:09 PM | 7-12-2006

Let's all please set Monday, July 24th at 7:00 PM Eastern Standard Time for a 15 minute quiet and meditative time to send our love and energy to Leroy for the healing of his body, mind and soul.

Sent by Fran Serpico | 2:12 PM | 7-12-2006

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