Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “survivor”

Why Me?

(Thank you for another good topic sent to me to write about.)

Why me?  Maybe the question should be why not me?

I spent only one evening on the first question when I found out that I had cancer.  It is like spilling grape juice on a white carpet.  You can either stand there and stare at the deepening stain or you can get right to work cleaning it up.  I worked very hard to rid that cancer from my body.  I had no choice.  A stain in the carpet, you can at least replace the carpet when it did not come clean.  My life would not have that opportunity.  I could not worry about how or why the juice was spilled, I had to clean it up, now.  There was no length of time to ask “why”, I had to start treatments, now.

That is not to say that I left myself off the hook.  It just took me a lot longer to get there.  In a short number of years following the end of my treatments, the question that would haunt me, and do so repeatedly, was why not me?  I had gotten through my treatments of course with the short term side effects, but only one would show any kind of permanence to it, the hair loss from the radiated area.  Within a couple years of treatments, I would find out that also my thyroid had been compromised from the radiation, and chemotherapy left me infertile.

But in 1997, I met a group called the American Cancer On-line Resources web site, .  I went on to the link for long term survivors because that is what I wanted to be, a long term survivor.  I was around seven years out, so hopefully that qualified me.  It did not take long for me to realize the web site was not what I thought it was going to be.  Yes, the people here were long term survivors, but they were dealing with so many horrible and severe issues that they were blaming their cancer treatments.  I did not stay long on the site because I did not feel that I belonged in that arena.  But something made me sign back on again.

I began to meet people at least over the internet who had gone through similar experiences with even the same diagnosis and staging as me.   But they were at a stage now, where they were either dealing with another cancer, heart issues, muscular issues, bone related concerns, and so on.  It was hard for me to relate because I was not experiencing those issues.

Then I met one particular list member who to this day, is one of the most important survivor that I have ever met.  For privacy reasons, I will call her Tina, and if she reads this, she knows I will talking about her.  It was over fifteen years ago when I first heard her struggles.  Tina had gone through treatment for Hodgkin’s Disease, just as I had.  But her treatment was done in a hospital network up in New York.  My treatments were done in Allentown.  She had been treated the year before me.  But there was a huge difference between one year, and several hundred miles.  The amount of radiation that she was exposed to was double what I had been, which was 4 times the lifetime limit.  Our chemos were similar.  By the time I had met her, she had already had another cancer (thyroid) and over two dozen surgeries.

Why did she have to go through so much?  Why not me?  Tina was not the only one.  I personally met dozens more long term survivors, some had the same staging, same treatment, different treatment, and most all had different issues they were dealing with.  But why them and not me?

I have often wondered about the three other patients who were treated with me in the oncology suite.  I never met them or even knew their names.  I only know that I opted for additional preventive chemo, and they obviously had not, evidenced by their absence.  I did find out at the time that two of them did have to have their chemo adjusted for their low blood count levels.  Some how, I took 8 full dose complete cycles.

But along with the people going through Hodgkin’s, or other cancers, patients who relapsed, patients who lossed their battle, or other long term survivors, I forever asked, “why them?  Why not me?  The relapse patients and my friends who passed away either from their cancer or secondary issues often left me with empty and hurting feelings.  I relied on them for hope and inspiration.  In spite of what they were going through, they were still living a long time, much longer than cancer patients were supposed to.  And since I had no serious issues at the time, I counted on that.  Why them?  Why not me?

Before I go any further, I must state, as I always do, times change.  Everyone’s bodies are different not only in physical being, but how they react.  Geography, schooling of the doctor, attitiude, diet, sleep, and many more factors all play into how well you do with treatments.  Then of course, there is progress.  That is something we often take for granted.  We think that it takes forever for new things to be discovered, when in reality, new treatments are discovered nearly every day.  If the treatments work better, and are less toxic, and produce less side effects, the patient will get those treatments, and the former treatments will become obsolete or at least last resort like those that were used on me.  The same was said to me decades ago, by other survivors who came before me.

Like I said earlier, I do not spend a lot of time asking “why me?”  But around the time that I met the survivors I now know today, I did begin to ask, “why not me?”  Why were others who were treated around the time I was treated developing such side severe side effects and I am not?  Why are people who were treated with the same modes of radiation and chemo in bad physical condition and I am not?  Why does Tina have to repeatedly go through life arrest and I do not?  Why them and not me?

Here comes another one of those “yeah, but…” disclaimers.  Back as late as the mid 90’s, cancer survivors still were not expected to surpass five years statistically, in spite of the fact that millions of cancer patients were doing just that.  But once it was realized, protocol was developed and the need was understood, to follow up cancer patients, even if completed with treatments.  There is still some discussion as to which doctor should be doing this, your primary care doctor or your oncologist, but now a cancer patient is followed up, forever.  And as cancer patients we know, the earlier something is caught, the better the chance of survival.  And by the continued follow-up care, any secondary cancers or issues that develop will be caught earlier than the critical care that was needed to prevent what would have been my fatal heart attack.

There is a lot to miss, if you spend too much time asking “why me?” or even “why not me?”  Just like the time passes if you stared at the expanding, wet, purple spot of grape juice still sitting on your white carpet.

If You’re Going To Get A Cancer…

The following story suggestion was made by a fellow Paul’s Heart blog reader and fellow Hodgkin’s Disease Survivor.   Thank you Cathy. 

Imagine that you have been just told that you have cancer.  The very first thought that came to my mind was, “I’m going to die.”  That is all I knew about cancer.  I would be subjected to horrible chemotherapy that would make me vomit, was painful, go bald, and would eventually cause me to lose so much weight that it would look like I was starving.  No one survived.

Not even knowing what an oncologist-hematologist was, I was sitting in a waiting room of one.  My name had been called, and I was escorted back to an office, not an exam room.  This had never happened before.  In walked Dr. G, who resembled Jeff Goldblum in The Fly.  He walked around his desk and sat down.  There was not even an introduction.  He just went right into this speech:

“Hodgkin’s Disease is a cancer of the lymph system.  It is very treatable either with radiation or chemotherapy.  It has a cure rate of 85%.  It is one of the more curable forms of cancer.  In fact, if you were going to get cancer, this would be the cancer you would want to get.” 

I do not know which was harder to comprehend, the fact that he was telling me that I had cancer, or that if I wanted to get cancer, I got the good one.  I was twenty-two, healthy, somewhat physically fit, engaged, and happy.  Cancer was for other people who were not… happy-ish with other things going for them.  I had never even heard of Hodgkin’s Disease.  But now I had to embrace it with the confidence of getting over a common cold.

I was still going to have to deal with the chemotherapy and/or radiation therapy.  I was going to puke.  I was going to go bald.  I was going to die.  I did not want to die.

Three months later, following months of testing and biopsies, I began my treatments.  It did not take long to confirm, that I did not want any cancer.  Treatments were not easy though I put on the brave face for each one.  It took four weeks for my hair to fall out, I puked in less than an hour from treatment, and I gained sixty pounds.  But in the end, I did beat it.  I was hopefully not only going to be one of the 85% to be cured of Hodgkin’s Disease, but perhaps help move the stat up to 86%.

I get it.  From a survivorship standpoint, Hodgkin’s Disease is a very curable form of cancer when caught early enough.  On March 10, I will recognize my 23rd year having beaten HD.  I very rarely celebrate it just out of respect for those who still battle the disease, or worse, have lost their lives.  It does not feel right for me to celebrate this.  But as I come across so many other people who have beaten cancer, and look for something, hope, inspiration, perhaps celebrating at least the milestones,   Because there are millions today now looking to find people who have beaten cancer.  If you know someone who beat cancer but wants to know someone who has lived longer, send them to “Paul’s Heart”.

I feel that I want to finally celebrate my longevity now.  With so many offering such nice compliments, support, and comments and suggestions, the cancer that I beat has given me an oppotunity to reach so many more.  I am hoping in time, we will see even more progress made in other cancers such a lung, colon, breast, and leukemia just to name a few.

I would make a safe bet, that of my readers at Paul’s Heart and beyond, there would probably be a minimum 15 people, usually younger in age, who have Hodkgin’s and were told it was “the cancer to have.”  But I think as we meet other survivors with similar cancers or different, the message is getting out.  We are winning the battle against cancer.  We are still far away, but we are getting there.  Soon, another cancer may take the place as the one to have.

Learning To Relax

I have three main sources of my visible stress, only one of which I make public, though the other two are known by select few.  The other sources of my stress end up internalized.  Given a scale of 1-10 with 10 being the worst, my stress level is easily at 10 nearly 85% of the time.  The other 15% of the time, if I can get to sleep, there is a reduction in my stress.  I am not sure, because it probably depends on how long I sleep, if I get into a deep enough sleep, and what I am waking up to.

My doctors are more than concerned with this, because stress is not good.  There are any number of maladies that I could be facing from stroke to heart attack.  I am on several prescriptions all meant to help keep my stress down.  I see a therapist regularly for my stress (as well as survivor guilt issues).  Medically I do what I can to relax, but it is not enough.  And since I am not willing to give up my living, a job that I actually enjoy doing, I must find other ways to decompress.

There are common ways to relax such as meditation, yoga, and even jogging.  For me, I get through my work day with music.  I plug in the old ear buds, turn my Ipod up as loud as it will go, and I am off.  Yes, it is very loud.  But you know what?  I do not hear anything.  I do not hear gossip.  I do not hear complaining.  I do not hear bad news.  I am able to place myself in another totally different situation mentally.  This was huge during chemotherapy, during convalescing from my heart surgery, and many other medical times.  But at work, I need it to get through my day.

Norman Vincent Peale wrote about “positive imaging”.  This was a concept where you simply took your mind to the place that you hoped to be in the future.  In terms of a cancer patient, for me, I was done with chemo, hair had grown back, weight lost, and life had been back to normal.  I think that any time you take your mind away from your present stress, it can be relaxing. 

Deep breathing.  You want to talk about feeling differently without even moving?  I have seen the directions written differently, but the concept is to change your pattern of breathing which I believe would change your brain’s thinking.  Some exercises have you inhaling through your nose for a count of five, holding for five, then exhaling from the mouth for a count of five.  You could do 5-4-4 or 4-5-5, I would imagine any formula would work.  I do around ten sets of this breathing  technique which often helps to calm me down.

Exercising can do wonders.  Any movement with your legs, walking even with a quick gait, breathing in through the nose, and out from the mouth, will provide immediate results of relaxation. 

I recently did a post on how much my golden retriever means to me.  Simply all pets are capable of providing stress relief.  And with cats, even comic relief when a laser pen is involved.

Psychotherapy.  Unfortunately, seeing a “shrink” has such a negative connotation or stigma attached to it.  But I can admit that I see one.  I have a major issues with Survivor’s Guilt (from many incidents in my life), but she is also crucial for stress management.  I am not crazy.  I am not depressed.  But I am thankful to have her as part of my survival care.

Prescription drugs.  For me personally, this will be a last resort.  I have had the ocassional anxiety attack prior to a medical procedure, where I was encouraged to take something, but refused.  In general, I do not believe taking prescription drugs accomplish anything with eliminating the stress, as I say, “only hiding from it”.

Finally, I have found a new form of relaxation, martial arts.  I have certain limitations due to my physical survivor issues, so I believe that I am only going at half speed.  But the relaxtion comes as I am on the floor, concentrating one hundred percent on the techniques and forms.  If I do not pay attention, I will get waffled in the face.  My partners tell me that I do not seem as limited as I believe, and am fairly accurate with my moves.  But for at least that hour, I accomplish something that I have not been able to do to this point, relax.  I have totally eliminated the stress for that our, without medication, and hopefully enough that when the next day comes, my stress is at a lower level than when I left it the prior day.

I must reduce my stress.  If you doubt what stress can do, stay tuned.  I am going to show you what stress actually looks like and what it does to the body.

Post Navigation