Hospice Care

My wish after being diagnosed with and surviving cancer, was that when it is my time to die, I want to just die rapidly.  I don’t want to live to contemplate my death and my losses again.   My father died the way I want to die.  He was sitting in his recliner one night watching TV, and yawned.  My mom asked him if he wanted to go to bed, and he said in a bit.  Then he quit breathing and his heart stopped.  He just died.   He didn’t have to contemplate losing his life, his loved ones, his future.   He was very fortunate.

But as a nurse I am always looking at statistics.   Unfortunately, 90% of us will die slow deaths from chronic disease.   Deaths like my father’s are only 10% of all deaths.  Only one in ten are blessed with those deaths, dying in your sleep in your bed…..

As I have been in the cancer community so long, I have communicated with many who are dying of cancer.  As I want to support cancer patients, I want to support ALL of them.  I want to help those seeking treatment, but I also want to help those who will succumb to their disease.  I have made some friends I have lost to appendix cancer.

In order to get better at helping those who would die from cancer, I worked as a volunteer for a hospice organization for 6 months.  I worked as a respite aid.  I stayed with cancer patients while their families went out for dinner or to appointments.  Sometimes families just needed to get away for a few hours.

I learned how much hospice can offer.   The hospice I worked with offered nursing aids who would bath the patient, change bed linens, feed patients and even cook meals.  Nurses saw the patients often and were on call 24/7.   Patients were never allowed to be in pain or to be anxious.  Counseling was offered as were clergy services.  Hospice workers and volunteers would help patients make memory boxes for those they were leaving behind.  The hospice offered grief counseling to families for a year after the patient had passed.   Patients last days were made comfortable spiritually, emotionally and physically.

The sad thing I’ve learned about hospice is that usually patients enter hospice only days before they die, when they could have had hospice services for 6 months.  Hospice services help both the family members and the surviving loved ones.  When I know I am nearing my end times, I want hospice care.  For what it’s worth, in my cancer journey I learned of one woman who entered hospice (to enter a doctor has to say they expect you to die within 6 months), and she didn’t die!  She lived for 8 years with hospice services!  At least with her hospice, once you were in you could never be discharged!



Newly Diagnosed: Finding a new “normal”

I’ve been recently speaking with someone newly diagnosed, and I was remembering how I felt when I was newly diagnosed.  Interesting, someone I think said, “but we all know we are going to die”, as if knowing that was a given.  As if knowing I might die was something we all knew every day.

But when I was diagnosed, I was told by a respected cancer center at a major city university hospital that there was no treatment for my cancer.  And we know that cancer that is not treated is fatal.  My kids were only 10 and 11.  That meant I would not be there to see them finish grade school.  Not see them grow up, not be there for their first dates, their first boyfriends, learning to drive a car, their first job,marriage if they chose to marry.   I would involuntarily abandon my children.  What was the worst thing a mother could do….abandon her children.   I wouldn’t  get to grow old with my husband.  He would have to raise our children alone.   I wouldn’t go back to school for my Master’s degree, I wouldn’t go on more vacations, I’d have to leave my job.  Funny, at the moment I can’t remember where I was working when I was diagnosed, so I guess my job wasn’t really important then.   But the sense of impending loss was overwhelming.  Though the day before I knew I would someday die, knowing that I likely WOULD die in a limited amount of time was totally different.  I remember thinking if I died, those who loved me would lose me, but  I would lose EVERYTHING!!!    Everything I knew, everything I did, everything I hoped for, everyone I loved.

Facing a potential death sentence is MUCH different from knowing you will someday die.  The day I was diagnosed, my “normal” life was gone.

Even when I had some hope, when I was going to get treatment that was 28% successful in a clinical trial, I still had a good chance of not living more than another year or two.  I read everything, and for my particular variety of appendix cancer, numbers said it was 90% fatal, some research I read didn’t even give a number, it just said outcomes for my particular cancer, signet ring, was “poor”.  The other varieties all had numbers for survival, not mine.   Take my advice, don’t look for survival numbers!  The truth is that many of the numbers include treatment that only included the removal of the appendix and a hemicolectomy and IV chemo, not the cytoreducation surgery and HIPEC, which has a much better outcome.   The number also include some that received no treatment at all.

I think I remember someone telling me I was lucky, because I probably lived everyday like it was my last, appreciating everything and stopping to “smell the flowers”.   I did live for awhile like every day was my last, and it is a horrible way to live!  Think of your day, thoughts you might have.  Your daughter’s birthday is next month, you are going for lunch with a friend next week, vacation in 6 months.  You have things you want to accomplish at work tomorrow.  We all live assuming and comforted by the fact that we have a future.  We look forward to things in the future, we dream.  That is taken away when you feel you may have no future.

For a long time I didn’t live every day like it was my last, but I didn’t plan my life beyond the next CT scan, which was in three or six months.  After I had a clean CT scan, I could plan my future only until the next one.  That was also a difficult was to live.  It was a relief when CT scans became once a year.

I did appreciate the milestones I have able to enjoy. My daughters’ graduations from grade, middle and high school, teaching them to drive, being there for first boyfriends.  Both have now graduated from college and one has married (I am not a grandmother yet).

I will be a 17 year survivor in May, May 16th.   I am not considered cured, they don’t use that word anymore, I am just living in long-term remission from cancer.  I remember when I was younger they called cancer cured if you lived 5 years cancer free; no longer, but that’s okay.  I no longer get CT scans or see an oncologist.  I don’t currently fear a recurrence anymore, I feel I am just as likely to get a new cancer.

You lose your sense of “normal” when you are diagnosed with cancer, but in the end, you can develop a new, and even better “normal”.





A New Cancer Immunotherapy: Cart T cells

I will be attending an educational offering this week about a new cancer therapy, Cart T cells.  It is a form of immunotherapy.   I’d been interested in immuntherapy before, getting your body’s own immune system to destroy cancer.  Cancer has a way of currently evading our immune system, so our immune system is not usually able to defeat cancer.  The trials I’ve seen of immune therapies in the past have not been very successful.

Cart T cells are a form of immunotherapy that seems to be very successful in fighting certain blood cancers (not solid tumor cancers like ours). It is very effective against some leukemias and lymphomas (blood cancers).  I am still learning, but what I have read is that white cells from the immune system are removed from the patient (blood is removed from the patient and the white cells are taken out of the blood and the rest of the blood is returned to the patient).  These white cells that are removed are genetically altered to fight cancer, then are multiplied and returned to the patient.  I read of a clinical trial in which 30 children with a form of leukemia who had failed all other treatments were treated with this immunotherapy.  27 of the 30 experienced complete and long lasting remissions.  These were 27 children that would have likely died form their cancer.  That is amazing!!!   I’m hoping that since you are only returning the patient’s own blood cells to them that there are no side effects.

While this treatment currently would not help any of us with appendix cancer,  they are working on advancing this therapy to work on solid tumors like ours.  So maybe one day!  It’s possible there would be a treatment that did not involve any chemotherapy or surgery to cure cancers.

Wouldn’t that be amazing!

I am attending the educational offering this Thursday evening.  I’ll get back to you to let you know what I’ve learned!