Tuesdays With Mary

Hospice of the Comforter

My parents have decided to re-start a hospice program for my mother.  They had been thinking about it for a few days but didn't want to say too much until they made a decision.  In January when they stopped chemotherapy, they had been working with a private hospice program Vitus.  When things improved in February they resumed chemotherapy, which is pretty uncommon and so the Hospice program ended.  However, the latest chemo treatments have proven ineffective and going back and forth to the hospital is wearing everyone out. 

So it makes sense to be in a hospice program and focus on quality of life.  This time they've chosen to go with Hospice of the Comforter, a non-profit organization in Florida.  They've got a hospital bed and oxygen at home and a nurse coming in regularly.  For more information about hospices and palliative care, there are some links below.

My brother Michael is visiting my parents for a few days.  My mother's weight is down to under 95 pounds which is the lowest it's ever been.  She's had some rough nights with a lot of wheezing and rattling in her lungs.  They've given her some medication which seems to be helping.  She's on some new pain medications but given her low body weight, she may be slightly over-medicated as she gets off the old meds. 

• Wikipedia: Palliative Care
• Hospice Patients: Choosing a Hospice (FAQ)
• Caring to the End: Information for Patients
• End of Life Resource Center: Fast Facts

More Fluid Drained

My father took my mom back into the hospital on Tuesday.  She had a rough night with a lot of pain and has not been able to eat much.  They spent several hours at the hospital, but in the end the doctor agreed to try to drain fluid to relieve the pressure in the abdomen.  I guess it is always a bit of a guess to determine if they will be successful with this or not.  But they were able to drain a lite and a half of fluid.  This did not provide any immediate relief, but it should help in the next few days.  My mother was able to eat a half a piece of toast and a boild egg when they got back home in the early evening, which is an improvement.  They've also switched her pain medications around to put her on morphine twice a day.

My brother Michael is going to fly down to see them later this week, which will be good.  Then my brother Tim and sister Karen are going to go out and visit in mid-July.  I may try to get down again also in the coming weeks.

Update:
Looks like the fluid draining did not have any effect.  My mother is not having an easier time. In fact things seem to be getting worse.

Cervical Cancer Vaccine Approved

 
A recent article in the Boston Globe "Preventing a Cancer" describes how a new vaccine called Gardasil by pharmaceutical giant Merck has now been approved by the FDA for the prevention of cervical cancer and HPV (human papillomavirus).  The vaccine is controversial since it requires innoculation in young girls prior to sexual relations.  In addition, Gardasil costs more than $300 for the necessary three treatments.  The vaccine does not eliminate the need for traditional Pap tests.

Worldwide, cervical cancer is a leading cause of cancer deaths in women killing an estimated 240,000 women annually, including 3,700 in the United States.  More information is available in the links below.

• Boston Globe: Preventing a Cancer
• Boston Globe: FDA Approves Cervical Cancer Vaccine
• WebMD: Cervical Cancer Vaccine Q&A
• Merck: Gardasil Study Overview
• Science Daily: Cervical Cancer Vaccine Holds Up

Back home again

My mother got back from the hospital yesterday afternoon.  She probably could have gone home earlier, but she was a bit nervous and decided to stay an extra day.  There was no major build up of fluid that could be drained and the catscan and x-rays didn't reveal anything.  She is still having a hard time eating because of the pressure in her stomach, but that appearst to be mostly due to the growth of the tumors.  They had put her on some anti-nausea medication at the hospital, but I think the dose had been too strong for her and she got a bit loopy.  She's off that now and back to normal.   

Mom called

My mom called this morning around 7:45 am when I was in the shower.  I'm normally at work by then, but this morning I had trouble waking up.  She said they were going to try to get admitted to the hospital today as soon as they had an open bed.  She's had some intestinal problems and trouble keeping food down.  In fact she hasn't eaten in two days.  I'm not sure exactly what's going on, but she sounded nervous, which is understandable.  I'll post more information later when I speak to my father. 

Update:
It turns out they were not able to get admitted into the hospital until the evening.  My dad was hoping they would do x-rays or a catscan and hopefully hook her up to an IV as she's been unable to eat. 

Fore!

I spoke to my mom yesterday.  She managed to get out and play a few holes of golf.  This is a substantial improvement over where she was a week ago.  She was tired after playing, but she had more strength in her voice.  This is one of the good things about going off chemotherapy.  It's such a tough process that it weakens you all around.  Without chemo, there's bound to be an improved quality of life.

My parents asked the doctor how long my mom has to live.  The doctor laughed saying that her last prediction had not been very accurate when she said Easter.  She now thinks it would be great if my mom lives to Christmas.  There's still a lot of risk that things could go wrong if she gets pneumonia, if the cancer spreads to her lungs or if there's any kind of intestinal blockage.  Any of those conditions could cause severe complications.  But for now we'll just hope for the best.

Lessons from Joan

Eric Kingson sent me some information about a book he wrote called "Lessons from Joan, Living and Loving with Cancer, A Husband's Story."  Kingson is a professor at Syracuse University and the book is published by the university and also available on Amazon.

The book traces the 32 months that follow Joan's diagnosis of cancer. It's a serious subject treated with warmth and even humor.  But I don't think anyone could read it and not cry. 

• Amazon: Lessons from Joan
• Aging Today: Book Excerpt

Back home

I spoke to my mom Thursday from Sweden and she is back home safe and sound.  They wanted her to stay one more day in the hospital, but I think she was getting restless.  The staff at the hospital are very good and she appreciates that.  "They make you feel like family," she said.   "They really care."

She sounds good, no problems breathing or anything.  They've upped the dosage of the medication in her pain patch and have given her some morphine she can take if there is serious "breakthrough" pain.  There is a risk of intestinal blockage from tumors and if that happens it is quite serious and requires an immediate trip to the hospital.  The pain there would be very intense and she feels confident that she would recognize it if it happened. 

My wife had sent her flowers which they got when they got home, so that was nice. 

Decision

My mom is still in the hospital.  Unfortunately, they were not successful in identifying any large enough pockets of fluid to drain.  So there will be some discomfort there and if and when there are larger pockets then they will deal with that. 

It appears that my mother has developed a mild pneumonia.  She's comfortable, but they need to determine what to give her for treatment.  She doesn't have any symptoms and isn't having any problems breathing, which is a relief.  She'll be in the hopsital for another day or so. 

Also, her CA-125 scores are very high (2100) indicating that the chemotherapy is not working.  So my parents have decided not to continue with her chemotherapy treatment.   This is the situation we faced down a few months ago.  To stop fighting cancer is not exactly giving up, but it is perhaps agreeing to disagree with the grim reaper.  There is an inevitability to this that is hard to face.   

They are not yet putting her in hospice, but that will come at some point.   

Hospital again...

I called my wife early this morning from Sweden (late night US.)  My mom is back in the hospital and they are looking into draining some fluid once again.  They're hoping she'll be out in a day or so.  This has got to be a gruelling process for my parents to deal with the constant ups and downs.  One day things are good, the next day there's a lot of pain, then another trip to the hospital.  I could see on my last visit to Florida that it is wearing them down. 

They don't always want to talk about what's going on because they don't want us to worry.  I'm not sure that's any better.  I figure the less they say, the worse things must be.