Burdens Beyond the Cancer Ward

 
“I wondered if the heart patients feel the same type of camaraderie we do. Do they refer to themselves as the citizens of heart world?”
 
 

Two down, one more tumor to go. At least that's what we all hope. The second RFA procedure seemed to go fine yesterday. No collapsed lung, so I was able to go home rather than spending the night in the hospital. And in the scans of my lungs, no new tumors appeared. But we'll take full scans next week. It's always possible something nasty has shown up somewhere else.

I think the second time is easier; I knew what to expect this time. For this tumor, they had to go in through my back. So yes, there were plenty of jokes about being stabbed in the back. When the medication wears off, I'll let you know if that's any more painful than being stabbed in the front. And I did learn a major lesson from that first time: Today I came home with pain medication.

This procedure isn't done in the cancer building. It's actually in an area of the hospital that primarily treats heart problems. When I was in recovery, in the cubicle next to me was a 4-month-old baby who was born with a heart problem. I cannot begin to imagine the anguish his parents have gone through. On the other side was an older gentleman, also with a serious heart problem. It was a little strange not being in the comfort of cancer world. There weren't any of those usual conversations we have: "What are you taking, what are the side effects?"

I wondered if the heart patients feel the same type of camaraderie we do. Do they refer to themselves as the citizens of heart world? I sort of doubt it. Cancer patients are in the hospital regularly. We see the same people. We're able to make friends. I got the sense that it's not the case for the heart patients, but maybe I'm doing them a great disservice.

What was obvious was that they are fighting just as hard as any of us. Their loved ones wore those same expressions that we've come to know so well. Anxiety mixed with pain, topped with a helping of, "How can this be happening?" I guess no matter what disease or health problem you have, some things always stay the same. It was another reminder of the heavy burdens so many people carry. The name of the burden may be different, but the weight is the same. Crushing. It's going to be a long time before I forget the image of that little baby in his hospital crib.

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I'm glad you came through okay. We're all pulling for you.

Sent by Stephanie | 1:38 PM ET | 02-21-2007

On Monday, a friend of our family who had just recovered from head and neck cancer choked on a piece of meat, the EMTs brought him back, but he had a heart attack and passed away at the hospital. In the past year, he had had major surgeries, chemo and radiation. He and his family were rejoicing in his recovery, he was posting on Caring Bridge regularly offering encouragement to the family of a 5-year-old girl with leukemia. Several years ago, he and his wife had seen their 20-year-old son through testicular cancer. He was always cheerful and encouraging, he didn't complain. He persevered through his radical surgery and treatments and all the side effects. We all thought the worst was over and tomorrow I'll attend his funeral. And even though cancer may have contributed to his death, it wasn't what brought him down.

The shock and sorrow we all feel is somehow made more painful by the fact we felt he had made it, gotten past the danger of the cancer zone. The worst has happened and it came from a different direction. The loss is just as deep.

Leroy, although I rejoice in your successful surgery and pray your scans are clear, this week I'll mourn the loss of a good man who fought the cancer war and was winning.

Sent by Chris | 1:42 PM ET | 02-21-2007

Dear friend:

I couldn't wait to log on today to get the latest news from you, and the news is very good. As I think about you and this journey, I will try to stay in the present, as I continually try with my own life, rather than obsessing or projecting about what tomorrow/next week can bring. All we have is today, this moment, this news. I'm so, so glad that your scans showed no new tumors. Today is a very good day.

Sent by Harriet H. Liss | 1:44 PM ET | 02-21-2007

Leroy, I have the questionable blessing of being in both the heart and cancer community. I had a heart valve replaced three years ago and was diagnosed with breast cancer last summer (had my last radiation today!). Yes, heart patients also bond with one another, but online instead of in the doctor's office or chemo lab, I think. The heart valve forum I belong to even has once a year "reunions" so we can meet each other and compare scars. It was hugely supportive and informative to belong to this group. I must admit that I was a little disappointed in the breast cancer forums I looked at. Many of the members seemed so uninformed about what they were going through. Was it reluctance on the part of women to ask questions of their doctors? Maybe I just didn't find the right one — which is the reason I log onto your blog everyday. Not only do you have valuable insights to relate, but the comments you receive are also wonderful and amazingly well written.

Sent by Marcia | 2:04 PM ET | 02-21-2007

Part of what moves me most about your blog, Leroy, is the way you consistently share your internal journey, and at the same time, keep that journalist's eye out for the view as you go through your days, sharing observations from the heart clinic and other places. You strike a remarkable balance, and we all gain so much perspective through your sharing and bridge building. Thank you all over again! Mend now in joy.

Sent by Sarah | 2:05 PM ET | 02-21-2007

I can't answer for all heart patients, of course, but there is a "club" of sorts for parents of children with heart conditions, or even the euphemistic "special needs" kids. Having to make life-altering, though potential life-saving decisions, for someone else brings its own set worries and fears. If it's any comfort, my little girl was a 4-month-old baby in a crib, waiting in pre-op for her heart surgery. Today at almost 3, she's just another healthy little kid, albeit with a pacemaker and a feeding tube.

Thank you for sharing your thoughts and teaching those of us outside your world to be more understanding and compassionate.

Sent by Jennifer Troisi | 2:07 PM ET | 02-21-2007

I have been reading your blog faithfully, but I do not have cancer. I work in Radiation Oncology, and your words have been very insightful to me. Today's entry struck a chord. We have just gone through a 2nd trimester pregnancy loss, and what a world did that open my eyes to. I think that until you experience a health problem, whatever it might be, it is very hard to relate to such the way it changes your perspective. I do not have any outward marks of my burden, and most people ignore it, because it is too much for them to handle (so the question that has been raised here about how much to tell is very relevant in our case too). There are days that I think that everyone has forgotten about my son. However, I found a great and supporting community online. The camaraderie, which you speak of, exists in the virtual world. We might never see each other face to face, but we share our bad days, ask questions about treatments and what to expect, and most importantly we care for each other, like friends should.

Sent by N.M. | 2:09 PM ET | 02-21-2007

I, too, know the feeling of cancer, and being on the heart ward. I determined that I was going to live even if the other patients [they were my buddies since the steroids and chemo give me plenty of time to talk] did not.

It was hard for me to know that three others who were stronger than me, or had a cancer less advanced died from the very same treatment.

I never could see how the nurses who work the oncology wards and the cardiology wards could do it for 15+ years... wouldn't you eventually get to the point of not caring but going thru rote mechanisms?

My simple advice: unless the person you are talking to is your partner... do not tell them the minor things you experience daily.

Nobody knows how to respond to the worries you have about: why did today's chemo make me vomit? Why did the newest scans show "nothing conclusive" aka the worst possible news when your looking for the answer to be shrinkage!?

Do I boldly lie to those closest to me about my feelings? Like stating I am happy you make me my favorite dinner of pecan crusted chicken... when the very notion of food makes you want to vomit? Or worse... you actually see it, want it, and when you taste it - it is like eating metal shavings... thru no fault of the cook.

No, I learned that some things you must do for yourself...YOU DO NOT HAVE THE RIGHT TO BRING OTHERS DOWN JUST BECAUSE YOU FEEL BAD RIGHT NOW!

This sounds rough... but reality is that very few people in this world know how to satisfy you better than you and your partner... and if the cancer/AIDS/BloodClots don't kill you...when you are done with it all then and only then will you be a better person. Until then you are medicines guinea pig for effective treatment, or their machine to notate the side-effects.

Nobody hates to be the 1% of the worst side-effects. When you are... say to the doctor, "It happened, please help me." But do not yell at the nurse... she is there to help you when your body cant get you off the floor because of the reddish/yellow chemicals pumped into your veins robs you of the strength to even lift your own weight.

Praise these doctors and nurses.

Sent by Itay Seigel | 2:31 PM ET | 02-21-2007

Hi Leroy,

Glad to hear there are no new tumors on the move. Keep up the good fight. This is my first time posting here. I have been reading and getting support from your blog for about a week now. I'm really glad I discovered it.

I am 34 and am currently almost half way through my chemo for colon cancer, which was removed surgically last fall. I had a moment today in my oncologists office where I locked eyes with a woman and we gave that knowing look of "you too?" It's both comforting and nauseating at the same time. I love to know that I am not alone, but I don't want to be having "cancer glance moments" at my age. I suppose I wouldn't want them at any age, but being so young and not having done even half the things I'd planned for my life yet really does just suck, for lack of a better word.

Anyway, I just wanted to say hello to you and all the posters here. Thanks for this blog. Feeling that there is a community out there for me right now is so valuable. And know that for all my ranting and raving, I will keep on pushing and fighting and berating my cancer until it leaves me in peace to live the rest of my years my way.

Best to you all.

Sent by Megan Caper | 2:34 PM ET | 02-21-2007

Leroy,

That's just what I love about your blog — you are able to see others at the same time as you are fighting your own battles. I hope all the preliminary good news pans out, but, like a good cancer warrior, I know you will never be able to let your guard down.

Keep fighting and keep taking those pain meds!

Thanks.

Sent by Robin | 2:36 PM ET | 02-21-2007

Hello Leroy,

Glad the RFA went well!

I think they (heart patients and others) do have a common-bond camaraderie. My husband's family has a history of high cholesterol and accompanying heart problems. Those who've had open heart surgery refer to themselves as members of the "broken heart club."

As we have fewer common bonds with our neighbors and our work or residential communities I think we seek fellowship with others going through similar ordeals. "We" have an understanding of what were all going through. XO

Sent by Katie | 5:13 PM ET | 02-21-2007

Yesterday my husband started his second round of chemo with avastin. Dec his scans didn't show anymore cancer he had a break over Christmas and new years his cancer came back just six weeks later and spread to the liver and more lymph nodes. Sitting at the lacks cancer center and looking at all the sick patients I wonder if we will ever find a cure. I pray for my husband, you and all the cancer patients, so hang in there.

Sent by Georgia | 5:20 PM ET | 02-21-2007

I have cancer, too. I joined your club in November of 2006 — the Tuesday before Thanksgiving to be exact. I held up well and weathered the holidays and then the surgery. Stage IB. The cancer had spread to the pleural lining — the oncologist called the spreading focal — all I heard and to this day hear is the word spread. Supposedly, when talking about cancer focal means a little bit. I still held up well — no crying, no anger — after all, I'm the one that smoked when the doctor said no chemo or radiation. He announced we got it all with the surgery and besides the survival rate of the survivors of 1B lung cancer at four years evens out whether you have chemo or not.

According to many articles that I have read that means a person who has 1B lung cancer has a 50 percent chance of 'out-living' the next 5 years. That's what I read — with the stage I have, I have only a 50% chance of survival. I don't like the odds and I don't like the diagnosis I got and I don't like my doctor — he's not willing to fight.

I want to thank you, Leroy. I have read most all of your posts and because of you I am going to fight for my survival. I will call a new oncologist when office hours open up this morning and ask for a second opinion. I will keep fighting.

Sent by Carol | 2:39 PM ET | 02-22-2007

I found a quote once that said. "Be Kind, for everyone is fighting a hard battle." So true, isn't it?

Sent by Janis | 2:40 PM ET | 02-22-2007

You lift me up Leroy. I am in my first week of chemo and radiation treatments for laryngeal cancer after having a total laryngectomy in January. I just wanted to comment about the 4-month-old baby in the crib in your recovery room. I hope you never forget that image. I am finding everyday that there is someone, or something, that gives me reason to count my blessings.

Life is good!

Cheers...

Sent by Buck Martin | 6:42 PM ET | 02-23-2007

Dear Mr. Sievers: I recently found out that a former coworker I worked with at the American Cancer Society (I was a fundraiser for them for 5 years) was recently diagnosed with colon cancer. My friend is only 24 years old which is rare.

I am a huge fan of NPR and was researching online when I came across your blog. My friend is chronicling her battle with cancer in a blog as well. She's a beautiful spirit and is an aspiring writer and wants to share her story.

As a journalist (I was a journalism major), I have a lot of respect for you and admire your bravery to share your journey for the world to read.

I thought it was ironic when I came across your blog, especially after I found out about her diagnosis.

My dad was diagnosed with prostate cancer last year and I thought, after working with the Cancer Society for so long, that I'd be prepared but I wasn't.

Thank you for sharing your voice with us. Sending you my positive thoughts and regards.

Sent by Therese Pope | 5:32 PM ET | 03-03-2007

Yes, Leroy, we heart patients do form a community. It doesn't happen at the hospital, because were separated from each other. The community comes together in cardiac rehab and in physicians' waiting rooms when were waiting to take stress tests.

The questions and conversations are very similar to your experience as a Cancer patient. "What are you taking?" "How many attacks have you had?" "Did you have muscle damage?" "What's your ejection factor?" (The "ejection factor" is an indication of how well your heart is functioning.)

I have been following your blog for the last few months. The other mutual experience between a Cancer patient and a Cardiac patient is the doctors "look" that you have written about. I've seen their shoulders slump and their eyes drop when they look at my chart.

My personal story is that I am 56 years old, and have had Type 1 Diabetes since age 12. I had two heart attacks—quite common with diabetes—at age 50, and several angioplasties which eventually resulted in a bypass at 52.

I look years younger than I am, because I really do work at controlling my diabetes. Nobody would guess my medical history by looking at me.

I have not seen anything in your blog about reading obits, looking for people like yourself. I read them assiduously, and find them frequently. Just today, there was a notice about a guy my age who died in an assisted living situation—the family requests that donations be given to the Amercian Diabetes Association and the American Heart Association in lieu of flowers. That's probably how my notice will read.

The thing is: Cancer is scarier and makes better copy. (I'm a journalist, too.) It is so scary that people like yourself will go through all kinds of hell to try and beat it or to borrow more time.

Adult-onset diabetes and attendant heart problems are perceived as mundane. People who choose hellish therapy to beat Cancer cant be bothered to make lifestyle changes—losing weight, quitting smoking, exercising and checking blood glucose levels to avoid premature death and disability.

Go figure...

Sent by Vicki Womack | 5:37 PM ET | 03-03-2007



   
   
   
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Leroy Sievers

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Leroy Sievers in the Ted Koppel Documentary

A Ted Koppel documentary focuses on his friend Leroy Sievers' "My Cancer" blog and the response it evokes.

 
 
 

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