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.

 

Finishing Treatment

Just realized I’ve been gone for over a month!  Please forgive me!  I’ve started working part time, but am ending up busier than when I was working full time,  With good things, though.   I did a bike tour, am getting ready to go on a backpacking trip, I’ve been working as a CASA (Court Appointed Special Advocate for abused and neglected children, a volunteer job), will go to a CASA convention in Fort Wayne and will soon be coming to Baltimore for Heat if to Beat It!  But today I wanted to talk about finishing treatment for cancer.

I don’t know about others, but my biggest struggle with cancer was after I completed treatment.  I began my struggle the day I finished IV chemotherapy.

Interesting, because everyone who knew me thought I should celebrate finishing treatment.  I’d made it through the big surgery, the intraperitoneal chemotherapy, the many months of IV chemotherapy. I’d been in treatment for the better part of a year.   Now I could go back to my life cancer-free with a greater appreciation of all things.

After my last chemo treatment, I took myself out to eat.  I always drove myself to and from chemo treatments and went by myself, so on my way home I took myself to a nice restaurant for lunch.  But, I didn’t feel like celebrating when I got there.  I felt disappointed, maybe even afraid.  I knew the surgery had removed cancer, and the intraperitoneal chemotherapy and IV chemotherapy had been killing any cancer cells that remained.  Now nothing was killing cancer.

Truth be told, I almost would have preferred to remain on chemo indefinitely.  Once we figured out how to get rid of my chemo side effects, I lived a normal and very comfortable life on chemotherapy.  It was only a few hours twice every three weeks.  When I finished chemotherapy, I had no more tools.  I was no longer fighting my cancer.  If any cells had survived, they could grow and cause a recurrence.  They could kill me.  I’d read my cancer had an 80% recurrence rate.

I began to live a life of uncertainty.  I wasn’t really sure if I’d be here and healthy in 6 months, if I could plan a vacation for next year, if I should start school to work on my Masters degree, which would take 3-4 years to finish.  I had CT scans at first every 3 months, then every 6 months, and finally just once a year.  But for many years, I only felt I could plan my life based on CT scans.  If a CT scan was negative, I felt I could plan my future until the next CT scan.   I always felt a CT scan was like going to court to hear my sentence.  A negative CT scan meant I could continue my life on “probation”.   A CT scan that showed more cancer would sentence me to more surgery and chemo and treatment.  A CT scan that showed cancer might even be a death sentence.   I’ve learned pretty much all of us feel that way about our CT scans.  We’ve even named the fear before CT scans as “scanxiety”.  I’ve known appendix cancer patients who are in bed for days before or after their CT scans, who ask for Xanax to take around CT scan time.

I understand why cancer patients often start using all of the on-line alternative treatments they read of….raw vegan diets, various supplements and syrups, controlling their thoughts and using “mind body” techniques.  When we no longer have any tools, we look for new tools or more tools.  I only believe in treatments I can investigate that are proven by research to be effective, so have never used alternative treatments, but I understand those who do.  I think it helps deal with that sense of uncertainty.

Over time after finishing treatment I did stop living with that feeling of uncertainty, but it took a long time.

People need to understand that when we finish treatment, we are not done with cancer.  We are not back to normal life before cancer.  We still need support.

Moving Forward

I’m moving forward to an new era in my life.  My husband and I years ago bought a fixer-upper house (remember This Old House?).   Well, it wasn’t very expensive, so we paid it off early, and over many years have remodeled and knocked out walls, so it’s a nice house now.  Since we no longer had a mortgage, we paid off our cars early and any debt we owed.  We aren’t quit retirement age, but my husband and I decided we no longer need 2 full time incomes, and we are betting older, but young enough and healthy enough to enjoy more time off.

So, as of tomorrow I will work part time, only 20 hours a week!  I will keep my job, but also got a second “PRN” (as needed) nursing job.  I love the idea of my life no longer being my job!  It really was as all of my days were 10-12 hours and my job is very stressful.  Now only half as much!

I want to do things I have not been able to do while working full time.  I was once into martial arts and want to get back into that, it’s very empowering!   I am also a CASA, a court appointed special advocate for abused and neglected children who are wards of the state.  It’s a volunteer job I did before I started my current job. I loved it and now can do it again!  My job has also become more of a desk job over the past year, so I want to get rid of some of the weight I’ve gained and to get back in shape…biking, swimming, hiking!  I’ll have time for that now!   I have a big list of things I want to do, and love that it’s summer so I can enjoy being outside!

I feel a bit guilty as I know many of you who are reading this are dealing with a cancer diagnosis and treatment and living with uncertainty.  I lived with uncertainty for many years, and it is a difficult way to live.  I’ve been where you are now.

But I can also be an example to you.  You CAN have hope, you CAN survive and live your life again, you CAN move forward.  Just take it once step at a time starting now, you are already a cancer SURVIVOR!!!!

 

So

GI Cancer Alliance

I live just outside of Chicago in Indiana, which is often convenient.  I can get to Chicago easily on the train, takes about 45 minutes and lets me miss the horrible traffic.  I spent the day in Chicago yesterday in my quest for cancer advocacy.  I was recently asked if I would like my organization, the Appendix Cancer Connection, to be part of an a non-profit that is an alliance of GI cancer non-profits, the GI Cancer Alliance.  Until this year they had all GI cancers represented…except for appendix cancer.  GI cancers together are the most common of cancers, and also the most deadly.  The goal of the organization is to will work to raise awareness, provide education and advocate to prevent, treat and cure gastrointestinal cancers.  That is something we all want.  Appendix cancer may one day benefit from research into GI cancers that may find biomarkers or genetic mutations that are common to all GI cancers.   All GI cancers might benefit from new treatments.  We are still our own organization, the Appendix Cancer Connection and independent, but we are also going to be working with the larger organization.  I am now part of their healthcare advisory team.

I was in Chicago yesterday for their board meeting, which was excellently attended and was a well-spent 3 hours.  This is a link to the organization: GI Cancer Alliance.

With their help, I was also able to attend the ASCO annual meeting in Chicago.  ASCO is the American Society of Clinical Oncology.  The meeting is huge, thousands of researchers and scientist from all over the world who are all trying to discover cures for cancer.  You can learn of the newest therapies available.  Currently immunotherapy is very big in the cancer world.  It is being used with great success to treat some lung cancers, but at least so far, immunotherapy has not been found to be very successful for treatment of GI cancers.  For many years I was involved with another very large research organization, the American Association for Cancer Research.   I was part of their Scientist-Survivor Program.  I was given many great opportunities via that organization.

I will like working with the GI Cancer Alliance, and they want to help me in my work with the Appendix Cancer Connection.  They say I need to get on Twitter!  I have never used Twitter, but I guess I need to learn how to use it!  If any of you can give me any help or links to Twitter education, I’d appreciate it!!