Appendix Cancer Survivor's Blog

This Blog Is Dedicated To Those Who, The Moment After Receiving A Cancer Diagnosis, Assume The Identity Of "Cancer Survivor" For The Rest Of Their Natural Lives.

Completing Treatment

I remember completing treatment.  I was diagnosed in 2001, and if I remember right, my last IV chemotherapy treatment was January 22, 2002.   I always went to chemo alone, I drove myself, so decided to take myself out to lunch to celebrate when I was driving home from my last treatment.

But I really didn’t feel like celebrating.  I didn’t feel the joy I thought I should feel when I ate that celebratory lunch.  I just remember feeling I’d lost my tools, I no longer had any way to fight my cancer, to keep it from coming back.  From now on I’d just be waiting to find out if a single cancer cell escaped the peritoneal and IV chemotherapy and would cause my cancer to return.  I actually tolerated chemotherapy well once we knew my side effects and how to prevent them.  Chemo didn’t cause me nausea or make me tired.  I’d never vomited because of the chemo.  I was always able to eat well while on chemo.   I trained for a bicycle century (riding 100 miles in one day) while on chemotherapy.  I would have been happy to stay on chemo for the rest of my life!

Interesting, but everyone else felt I’d made it!  I was done!  I could go back to my before-cancer normal life!   I was cancer free!  They’d supported me through it all, now they could take a break!

But my before-cancer normal life was gone.   I had to learn to live with uncertainty.  I never knew if I would have a future. I’d read my cancer recurred 80% of the time.  I couldn’t make plans for a vacation down the road.  I could only plan my life between CT scans.  If a CT scan was clean, then I could relax and enjoy my life until my next CT scans, every 3 months at first, then every 6 months for several years.   I couldn’t plan vacations, I couldn’t even say the words “next year”.

Things got better when my scans were once a year, but I still lived with uncertainty.  I still suffered “scanxiety” every time I had a CT scan, wondering if my cancer-free life would be over.  Surviving 5 years helped, but not a lot.  I’m old enough to remember when in the past, being cancer-free for 5 years meant you were cured.  No one uses the “cure” word now.  Even though I am currently an 18 year survivor, I am still not cured, just in “long term remission”.

Against medical advice, I quit getting CT scans and seeing an oncologist at about 10 years after my surgery.  That gave me peace, helped me move forward, helped the uncertainty fade.

I know many will feel your struggle is over once your finish treatment, but in some ways, the struggle is just beginning when treatment is over.   We need as much, maybe even more support, when we are no longer being treated for cancer.

The Life After

When I was diagnosed with cancer, I was not given much hope.  I was at one point told I was terminally ill, that I would not live.  Even once I found treatment, I read about the odds of survival for signet ring cancer, none of the statistics were encouraging.  I read that even with treatment, my cancer was 80% likely to recur within the first three years, so I did think a lot about dying and tried to prepare myself for that.  One of the people who helped me most in my cancer journey was a friend who listened to me talk and cry about how I felt about dying, what I would leave and what I would leave undone.  She didn’t tell me that I would be fine or that I should think positive, she just listened and understood.  She also knew I might die.

When I contemplated dying I read MANY books (I’m a reader) about people who had had near death experiences.  I read many books about the afterlife.  I am truly convinced there is a heaven and that’s where I will go.  And I don’t think I will be sitting on a cloud playing a harp.  I believe I will have a real body like I have now, but one with no illnesses, one that is strong and healthy and young.  I believe I will be able to eat great food!  There are so many references to heavenly feasts in the Bible, and when Christ was resurrected and came back, he ate food with his disciples in his new body, we will too.  I believe I will be busy with things I love to do and will never be bored!  I look forward to heaven.

I could give you a big list of books I’ve read, but one of my favorites was “In Light of Eternity”.

I recommended that book to a friend who lost her young daughter, she said it really helped her.

Think of reading some books like these (or audiobooks if you don’t read!).  I think they will help you.   Even if we don’t die of our cancer, we still will someday, and it feels good to be prepared!

Successful Treatment for Appendix Cancer

I’ve had two recent comments from people diagnosed with appendix cancer.  It sounds like neither were being treated by a specialist.  It sounded like they were being treated as though they had colon cancer.  This treatment is not appropriate for appendix cancer.

Just receiving IV chemo only, even after bowel surgery, will not cure this cancer.  IV chemo may shrink tumors and slow their growth, but it will not rid your body of the cancer.   If you only receive chemo therapy, you will probably die of this cancer, though you may buy yourself some time.  One specialist told me 100% of the patient he knew who had only received chemotherapy had died.

This cancer spreads small cancerous tumors into the abdomen.  These tumors need to ALL be removed during a surgery called cytoreduction surgery that is done by an appendix cancer specialist, not just a surgeon who does cancer surgeries.

Chemotherapy needs to be put directly into your abdomen, a procedure called HIPEC.   The chemotherapy comes into contact with and kills any microscopic cancer cells that can’t be seen following the cytoreduction surgery.  If these microscopic cells remain, they will cause the cancer to recur.  The chemotherapy in the abdomen cannot kill cancerous tumors that can be seen by the eye, only microscopic cells.

I have information about cytoreduction surgery and HIPEC on my website.

You may receive IV chemo after the cytoreduction surgery and HIPEC, but I was told that chemo was to prevent me from having the cancer spread outside of my abdomen if any cells escaped during surgery.  I was told that that chemo would not kill tumors remaining inside my abdomen.

Treatment for appendix cancer requires treatment by an appendix cancer specialist.  Many famous hospitals and medical centers do not treat appendix cancer well.  There are not many appendix cancer specialists in the United States, so most likely you will have to travel.  There is not even a specialist in every state.

If you look at my Physicians and Facilities pages, you can find specialists who treat appendix cancer.  I traveled 1600 miles round trip 5 times to see my specialist.  But I am alive 18 years after a famous hospital in a major city told me I would die of my cancer, that I was untreatable.

Please, if you are newly diagnosed, see an appendix cancer specialist ASAP!!!  Even very good surgeons and oncologists are unfamiliar with appendix cancer, you need someone who specializes in the disease.

 

 

 

 

September 11, 2001

I didn’t remember until almost the end of the day that yesterday was the anniversary of the 2001 terrorist attack.  I don’t watch the news, so had no reminders.

The terrorist attacks kind of weave into my cancer history.  I was being treated for my cancer in New York City.  After my initial surgery and recovery, I went to NYC every 3 months for follow-up with my surgeon and oncologist.

My final appointment in New York was to be September 5th, 2001.  Just before my appointment scheduled for September 5th, my oncologist called me and told me she wouldn’t be available the 5th, that I needed to change my appointment to September 11.  I told her no, I had already booked my hotels and flights, and besides, I was having chemo on the 11th and didn’t want to miss a day.  She was unhappy with me, but said for this time and this time only we could do a phone conference.

For my first 3 month follow-up visit, since I was always there for a few days, my husband and I walked miles on the upper east side of Manhattan, supposedly the most expensive/richest zip code in the United States.  My next appointment we explored midtown, where Carnegie hall, Times Square and Central Park are located.

My September 5th appointment we spent the days exploring the southern end of Manhattan; Greenwich village, Soho, China Town…..and the Twin Towers.  I walked in front of the Twin Towers on September 6th and admired them.

I cam home on the 7th and went to my chemotherapy appointment on September 11th.  I usually spent about 4 hours in chemo.  On that day, when I walked in, all of the patients and nurses and physicians surrounded the TV, the Towers had just been hit.

We watched the coverage my whole chemo appointment, I couldn’t believe those great towers I had  seen only days before were falling to the ground.  I thought I probably passed many people on their way in and out of the Twin Towers when I walked in that part of the city.  Maybe people who might have been in excellent health and who had just gone to the health club before work in the Twin Towers.  People who jumped from the tower to avoid being burned to death.

I’d been so obsessed whether I was going to live or die, and so many lives ended unexpectedly that day.  What if I had been walking in front of the Twin Towers that day?

Three months later, I had to go back to New York again.  The depression in the city was palpable.  The concierge at the hotel I always stayed at had had a child going to school near the Towers.  There was no transportation that day so he ran many miles to the southern end of the Island to find his son, who had watched the plans hit the Twin Towers from his classroom.  He said his son could no longer sleep alone.

We walked again in southern Manhattan and saw the large black hole in the ground where the Towers had been.  The fencing was covered with quilts and photos commemorating those who had died.  There were vendors selling memorabilia and CDs with films of the events that day.  I bought a CD as a reminder.

I guess 2001 makes me remember that none of us are promised tomorrow.  I don’t believe we should live every day as our last, that is too difficult, but I try now to be thankful for every day and what it brings.

Making a Difference

I am a CASA, a Court Appointed Special Advocate for abused and neglected children.  I work with children who have been removed from their home and their parents by the Department of Child Services as their living environment is considered unsafe.  I represent them in court.  This is a volunteer job.

As a nurse, I work at a residential treatment center for minor children who have also been abused and neglected most of their lives.  Their histories are horrible, many were being raised by drug addicted parents, some of the children have gone to dumpsters to find food for themselves and their siblings, some have been sold into  sex trafficking or to their parents drug dealers for sex.   Some have spent their lives in multiple foster homes, some were abused in foreign orphanages before being adopted.  Some were born addicted to cocaine.

I just returned from a national CASA Convention in Atlanta Georgia.  They had three plenary sessions each day, which is unusual.  Most conferences have one at the opening of the conference or maybe once daily.  These sessions are attended by sometimes a thousand persons at a conference.  Usually these sessions have important or famous guest speakers.  I listened to more than 6 of these speakers.  Many had been on Opra or CNN, most had written best selling books, all were famous in their own right.  All were very successful adults.

All but one of the speakers had also been an abused and neglected child.  Most had been in foster care.

It is said many of these abused and neglected children grown up to be unemployed, living in homeless shelters, in jail or in mental health institutions.

What was different about these individuals?  They had all had all had difficult childhoods but had grown to become overwhelmingly successful adults.

All of them had had one person in their lives who had treated them well, who believed in them, who supported them, who told them they could one day succeed.  Most who had made a difference to these speakers had just said something to them, sometimes just a few sentences.

I left the conference feeling how important maybe everything we say to another person is.   We might be the one person who says just a few words that changes someone’s life.

I also have a friend who recently lost her daughter.  She has been affected by just short statements people have made.  Many statements have caused her pain, though some have helped.

It made me think of us as cancer patients.  I know I was negatively affected sometimes by things people said…”I know you will survive this if you just think positive”, or “You are so lucky, you probably enjoy every day because you can live it like it’s your last”.  Then there were the people who were silent but just stayed with me and let me cry…they helped me.

I’m sure all of you have been affected either positively or negatively by things people have said to you or done for you or to you.  What has been helpful, and what has been hurtful in your dealings with people, even family, since you have been diagnosed?  Who has made a difference in your dealings with this disease?

I would love it if you could share that in comments here.   What have people done that has helped you in your struggle against this disease?  What have people said or done that’s had a negative impact on you?

Blessings

In May I will be 18 years cancer-free after a terminal diagnosis.   I am often told how blessed I am, how God found favor in me that led to my survival.  I agree 100%.  I am so blessed.  I believe in God and feel that he blessed me with surviving my cancer long enough to see my kids graduate from grade school, Jr. High school, High School and even college!  I even was hear for my youngest’s wedding!  I celebrated my 30th wedding anniversary!

But a thought just occurred to me the other day.  Have all of those who have told me how blessed I am to have survived cancer thought of how blessed they are never to have had cancer?  To have never dealt with the Mother of All Surgeries,  to have never had to deal with chemo therapy, to have never learned to live with uncertainty for years as we continually get tested for recurrence?

We do survive cancer, but we really never get to go back to our before-cancer normal.  I remember missing my “normal” life after I was diagnosed and while I was in treatment.

Most of those who tell us how blessed we are also seem to assume that once cancer treatment, the surgeries and chemo are over, we can just go back to our “normal” lives, cancer is behind us.   But in a sense it never really is totally “over”.   We will have the designation “cancer survivor” for the rest of our natural lives.  Cancer will always be a part of our lives, though the part does get smaller as the years go by (I’m here to tell you that!).   We are blessed, but we are also changed.

 

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!