Contemplating Dying

Being a nurse and working for several years in an ICU, I saw many people die.  Before cancer, I thought I’d want to know beforehand that I was going to die, I’d want to get my life in order.  I worried about dying suddenly and someone coming across my many years worth of handwritten journals.  They were mine, and I didn’t want anyone else to ever read them.  Writing had just always been my way to cope with my struggles.  I think I thought that knowing ahead of time would give me some sense of control (I am kind of a control freak).  I could say goodbye to everyone.  So, I guess I wanted to die slowly, predictably?

Having cancer changed that for me.  Initially I was not expected to live, I was told I was terminally ill.  Even after treatment I knew my cancer had a high recurrence rate and that I could still die slowly of cancer.  Contemplating dying slowly was contemplating all you would lose.  Saying goodbye to and abandoning your husband and children.  Letting go of all of the plans you had for the future….going back to school, a job you always wanted, travels you had planned, retiring some day.  I spent a long time contemplating and grieving for all of the things I stood to lose, that could be taken away from me.   Saying goodbye to so many things.

My father died some years after I finished treatment.  He was in his recliner watching TV one night, and yawned.  My mom asked him if he was ready to go to bed.  He said in a little bit.  Then his heart stopped.  One minute he was alive, the next dead.  He didn’t suffer any pain, wasn’t ill, hadn’t had months and months of treatment for an illness.  He didn’t know he would be leaving that night, so didn’t have to contemplate his losses.  I wanted a death like that.

I did some research, though.  Unfortunately, 90% of us will die of chronic disease, only 10% of us die suddenly.  Before my cytoreduction surgery, I’d already spent time contemplating losses and contemplated possibly putting my family through a long period of time where they would watch me suffer before I died.  Before my surgery, I prayed that if I was going to die of this cancer, that I just die in surgery and get it over with.  I burned all of my journals before my surgery.

But I lived.  In May I will be an 18 year survivor.   Now though, I hope to be in that 10% that doesn’t contemplate their death, doesn’t expect it.  I want to die in my sleep!

Perspectives as a Cancer Survivor

Cancer is in some ways different from other diseases.  Nowadays no one will call us “cured”; even after 5 years cancer free, we are just long-term survivors.  So we never feel cancer is really “gone”.  I have survived long enough now that I don’t worry about my cancer recurring (17 years NED), but I probably still occasionally worried about it recurring at 10 years.  Our perspectives as cancer survivors may be different from those with other diseases, even chronic ones.  It is always in the background of our lives.

I’ve tried to come to terms with a fear of dying, especially when I was younger.  I think I am fortunate to be a nurse.  I am very aware life is not fair.  I’ve worked in a lot of ICUs and seen many people die before their time.  A headache was really an aneurysm that ruptured and caused death, a child died trying to retrieve a toy from a 5 gallon bucket.  I’ve seen many people with chronic diseases that have left patients with no quality of life.  Physically, once I got past the cancer surgery and all of the chemo, I have physically had a great quality of life.   I was in New York City and walked past the Twin Towers on September 6th, and just a few days later 3000 people who were healthy and working lost their lives.  When I fear dying I try to remember these things.

Life is short and we are all here just here on a journey.  I believe in a soul and am Christian, so believe in an afterlife in Heaven.  I’ve read many books on heaven and near death experiences that have given me confidence in my beliefs.  I’d be happy to share m book list!

I read a quote the other day I loved, “I am not a body, I have a body.  I am a soul.”

 

Happy Holidays

Happy Holidays!  It’s been almost two months since I’ve posted here, forgive me.  We all get busy during the holidays, but I was also working a lot of overtime.  People helped me have time off I needed so I tried to help others have the time off they needed, and the hours added up!  I worked 60 hours the week of Christmas.

We have one get together, my husband’s family of about 40 gets together one day near Christmas.  This year my daughter hosted the gathering.  I think post cancer, I have become very aware of time and the passing of time.  At the gathering there were many children I didn’t know!  They were the children of my nieces and nephews.  I was remembering my niece being three years old when I met her and hiding behind her mothers legs when I approached as I was a stranger.  Now I think she is in her early 30s, has two children and is married for the second time with step-sons.  Another niece of mine has 5 children, another 3, another 2 more.  The children have come so fast and when I only see them once or twice a year I don’t know all of their names or even who they belong to!

My mother-in-law (we’ve dropped the “in-law” and I refer to her as mom) is in her 80s.  She was 10 years younger than I am now when I first met her.  I remember my children being infants when I first attended these family gatherings, now my eldest is almost 30.

Time passes so quickly.  And the older I get the more quickly time passes…the benefit to that is that winters finally seem shorter!

But I am more aware of time I believe related to my having cancer.  I think of how many experiences I have had in life and how many changes I’ve seen and all of the history I’ve witnessed.

I think that is a good thing.  I am blessed to have had all of this extra time.

Aging cancer survivors

I just had a birthday, and I am now 59 years old.  I think of all of the changes I have seen in my life, many changes just in the last 17 years that I never should have seen.  I was told I was terminally ill 17 years ago.  I wasn’t supposed to have a 59th birthday!  Usually I’ve celebrated every year I get older as an extra year I wasn’t supposed to have.  I am one of the aging cancer survivors!

We have more long term cancer survivors now, that will be interesting as America ages.  For fun I looked up “aging cancer survivors” on Google, and was surprised at what I found. I expected to read of celebration, but instead it talked about how cancer survivors age more quickly as a side effect of treatment.  Well, I don’t feel I’m aging more quickly!!  Someone recently told me I looked 40 (never mind the fast food cashier who smiled and said she was giving me the senior rate I wasn’t old enough for that same week).

My husband and I recently decided to start working part-time vs. full time.  This means I gave up my job of hospital Director of Education and Clinical Nurse Specialist.  They kept me part time for awhile, but it really is a full time position.  I have a new part-time job working in an inpatient psychiatric pediatric hospital.  The patients there are children who have really had very difficult childhoods; many were abused physically and sexually and were neglected.  Some of their coping mechanisms have been suicide attempts, self harm, sexual promiscuity and drug use.  This hospital has wonderful staff and a wonderful program that really helps these kids who have been through so much.  It is a privilege to work there.

With my extra time I am also doing some volunteering.  I drive for Meals on Wheels twice a month, I’d done that prior for ten years, and it was a good experience.  I am also a CASA, a Court Appointed Special Advocate for abused and neglected children, and am now advocating for an 11 year old girl who has been abused and neglected most of her life.   That is something I had done previously but became too difficult to do when I was working full time.

But I still have a lot of extra time to do things I love, like reading.  I’m planning on playing my piano more and attending the YMCA more often and getting in better shape.  I also want to work more for the Appendix Cancer Connection!

 

Heat it to Beat It

I just came back from Baltimore Sunday night, I attended Heat It To Beat It, the annual fundraising walk of Dr. Sardi and Mercy Hospital.  The walk raised funds for research into cancers that can be treated with HIPEC: appendix, ovarian and colon cancers.  Cancers that spread into the abdominal cavity.  Most represented at the walk is appendix cancer.   Next year is their 10th anniversary.  I’ve so far been to 6 out of the last 9 walks representing the Appendix Cancer Connection, my organization, there.

I often speak to appendix cancer patients who ask me if I know of long term survivors other than myself.  They feel badly they haven’t been able to talk to anyone who has been through what they have.

I suggest you go to Heat it to Beat It if you can next year.  I was there 10 minutes this year and met  nine and ten year appendix cancer survivors.  Below is a picture taken of appendix cancer survivors, there are many.  And just ask anyone with a red survivor T-shirt to talk to you, and they will!  It’s a support group too!

There is HOPE there!   Survivors!

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Guilt

For some reason I recently got to thinking about guilt in regards to a cancer diagnosis.  Did we do something wrong to make this happen?  Did we not eat right, did we not exercise enough, did we smoke?  I remember seeing a survey for appendix cancer patients, and many had smoked before diagnosis.

I smoked for many years before my diagnosis, and did not quit smoking until 2 years after my diagnosis.  If smoking is related to stress relief, having a cancer diagnosis makes it VERY hard to stop smoking.   I also told myself chemotherapy can cause cancer (it is carcinogenic), and all of the radiation for CT scans was carcinogenic, so I told myself I was at least going to choose one of my carcinogens.  I finally did quit after 2 years, and quit for 6 years, then started smoking again for a year (hoping to lose the weight I gained when I quit, didn’t happen).  I’ve now quit again for I think 6 years?  Now I don’t want to smoke and don’t even think of smoking, though I still do enjoy the smell of cigarette smoke.

Interesting, so many people are made to feel guilty if they smoke and get lung cancer, but actually only one in 10 heavy smokers get lung cancer in a lifetime, 9 out of 10 don’t.   I recently talked to an oncologist who said he has many lung cancer patients who NEVER smoked, and many newly diagnosed who quit smoking many years ago.  One of my physicians recently died of lung cancer 2 weeks after he was diagnosed, it had metastasized to his brain.  He had never smoked. The oncologist felt smokers should not be made to feel guilty.

I think we need to be careful not to make ourselves feel like we had any part in creating our cancer.  People who do everything right and have healthy lifestyles get cancer, children get cancer.  Cancer is never fair and no one deserves it, not you, not me.  We need to be gentle with ourselves.