My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, July 28, 2011

Two Miracles in One Family???!!

All of us diagnosed with cancer know how the bottom can fall out of our lives at any time.  We know we are not promised tomorrow.  We live with that.

I recently went to lunch with a friend who is our local chapters "Compassionate Friends" director.  It's an organization for parents who have lost children.  She recently lost a second child, and she found others who had also.  At lunch we talked a lot about her second loss.  How heartbreaking,  I can't imagine.  She said now she has no fear of death, as it's the only hope she has of seeing her children again.  She met another parent recently who had lost one child and now had lost another to a car accident.

I got a phone call last Friday.  If I don't know the caller via caller ID, I don't usually answer.  But the caller ID had a name, though it was from an area code I didn't recognize.   On a whim, I decided to pick up the call.  When I did, the caller asked me what my name was.  Weird.  I asked her what HER name was.  Then she asked if I had a daughter by the name of Angela.  I said yes.  She told me my daughter had been involved in a motor vehicle accident, she was at the scene.  I started shaking uncontrollably.  I asked loudly and repeatedly  if she was okay. I knew she was driving home from a southern part of our state.

She said my daughter had rolled her vehicle but appeared to be okay, with only scratches.  She put my daughter on her cell phone...my daughter was hysterical, apologizing and apologizing for wrecking the car.  I didn't care a bit about the car.  My daughter was sobbing.  I was terrified.  I talked to the police at the scene, they told me the car was totaled.  I told them to call an ambulance and take her to an ER to be checked out as it was a bad accident.  I was terrified,  The good Samaritans who had pulled her out of a window of the inverted car stayed with her until the ambulance came.  They later called me to tell me what hospital she would be taken to.  When I got my act together, I packed a few things and my other daughter and I embarked on the 2 hour trip to the hospital she was taken to,  We arrived just as she was being given ER discharge instructions.  She was tearful and traumatized, but well. I was so, so grateful.

She had several items in the car, including a $1500 laptop,  I got a hold of the police, they had towed her car to a body shop 45 minutes away. I left my daughter and her sister at a shopping mall with lunch money while I went to go retrieve her items.  I figured she didn't want to see the car. When I saw the car at the body shop, I started shaking again.  The car was totally destroyed, mangled.  Roof caved in, gas tank ruptured, both axles broken, windows crumbled, doors mangled, hood crumbled.  I didn't even know if it was safe to enter to retrieve her items.  How had she survived that with only scratches on an arm and a leg???  A miracle for sure.

I retrieved her items....with difficulty and a few cuts and bruises. Glass and jagged metal everywhere.  There was an inch of gravel and dirt on the floor of the car.We got home and tried to get the gasoline smell out of the items I had retrieved.  Her computer, amazingly still works,as does her MP3 player and cell phone, though the computer  battery casing was damaged. The only loss was her glasses, I'm sure they left her face when the windshield shattered. We can replace those. She doesn't remember a lot of the accident, maybe God's way of saving her from the trauma.  The ER said they had never seen anyone with so few injuries in a roll-over. 

I am so, so grateful.  Two miracles in one family.  We are truly blessed.  As a nurse, the Good Samaritan act offers limited coverage if I stop at the scene of an accident, so I've been reluctant to stop. From now on I will.

Tuesday, July 19, 2011

Heat it to Beat It 2011!!!

Just wanted to let everyone know that the Heat It To Beat It walk is back again this year!  I traveled to Baltimore last year for the walk and it was GREAT!!  It is a beautiful walk in Baltimore's Inner Harbor, and funds raised go to research for cancers like ours that spread into the abdomen (peritoneal surface malignancies).  They were great about providing snacks and drinks.....even chair massages etc. after the walk!  A DJ was present and they even had warm up dancing!

Last year, the inaugural walk hoped to have 300 attend and to raise about $50,000, I think.  In the end 500 attended and $100,000 was raised, it was a HUGE success.  I was able to meet and have dinner with Dr. Sardi there, which was a real thrill.  We had communicated via e-mail and phone for 5 years, but had not yet met before then.  He is someone I truly admire; he is an excellent HIPEC surgeon who tries to give even those of us with high grade tumors and extensive cancer a chance.  He is passionate about research into our disease. He is also a very caring and easy to talk to person.  I truly have him on a pedestal.  I hope to get to hang out with him again for a bit this year.   I plan to go every year, and this year I think I even have enough frequent flyer miles for the trip!  Baltimore also has a great rail system, I stayed at an inexpensive hotel near the airport (Inner Harbor hotels are VERY pricey) and the hotel would provide transportation to and from the railway, which cost only $3.50 for an all day pass.  The train went straight to the Inner Harbor.  It was great!  I'll stay in the same hotel this year as it had a perk I LOVED.....free milk 24/7,  I love milk and never seem to get any when I travel.  First hotel I've visited that had free tea, coffee AND milk!

Last year I had a booth to represent the Appendix Cancer Connection at the walk and hope to this year also.

I've communicated with many of you via phone and email, and if you attend the walk, please look me up, I'd love to meet you in person!  The link to the walk's web site is here:   Heat It To Beat It.

Please try to come!!!  You'll be inspired!  If you can't attend but want to sponsor my walk, my site is Carolyn's Heat It To Beat it Site.  Donations for sponsorships will go to Heat It To Beat It research!

Tuesday, July 5, 2011

Sorry I've been away so long!  I like to post once weekly, but am really behind!  Too much school!

In my palliative care class, we had to interview someone different from ourselves about their thoughts on death and dying from a spiritual perspective....I interviewed my Catholic neighbor as I am unfamiliar with Catholicism.  Most people I know are pretty much like myself, I'm sorry to say!  I wished I'd had some Muslim or Buddhist friends.  I need to diversify!

One woman in my class interviewed someone from a clannish  blue collar working group in the Appalachian mountains....people who lived near or at the poverty level. I thought hers was the most interesting interview.

In their culture, if someone was in hospice and expected to die, they had something similar to a wake with the dying person present.  A sort of party with music, food and dancing.  People shared their memories of the dying person,with the dying person present.  They had a video of pictures of the dying person at the party, and everyone could go tell the dying person how much they meant to them, say their final goodbyes in person.

They also had a raffle and silent auction with money raised to help for burial (as none of them could afford it) and to make the dying person's last wishes come true....to visit a place they wanted to visit or to fly to see a distant relatives etc.  In a strange way that seemed kind of morbid, but on the other hand, it seemed kind of great!  Wouldn't you in some ways want to hear your eulogy while you were still here?  To leave this life knowing you'd made a difference to people, to be celebrated while you were alive instead of after you were gone?

I attended recently the funeral of my friend's daughter.  She was only 27.  My friend had lost her only other child at age 25 five years ago.  Many wonderful things were said about the daughter.  She'd been valued and loved.  I wish she could have been present to hear how much she'd been loved and appreciated.  To have seen the video of her life and photos of her life at her wake.

Are we doing it backwards?

I used to work at a hospice at a volunteer.  I worked with dying patients, and I could talk to them about their feelings and fears and thoughts as they were dying.  It was a good experience. 

For my palliative care class I had to do a narrated Power Point presentation. We all chose our topics....I chose near death experiences, visions of the dying.  I've read lots of books about that, and the cool thing is, of those who are conscious near death, 50-67% experience near death visions of angels, of heaven, of those who have died before them coming to take them home.   My neighbor, who died of pancreatic cancer, saw her husband, who preceded her in death by 10 years, sitting in a chair in her room in the days before she died.  Another friend who had a sister died of colon cancer at age 30 said her sister saw angels in her room in the days before she died.  I've read several books by hospice nurses speaking of these visions...of people who at the time of their death felt that they were only crossing from one room to the next.  Who were accompanied to their next part of life.  A good book about that, written by hospice nurses, is Final Gifts.

While I am a cancer survivor of 10 years, and  feel that may mean "cured", a word not often used in the cancer community (as most would say I am only in long-term remission), cancer has left me feeling always vulnerable.  I know of those with my particular cancer who've had recurrences at 14 years. I know how the bottom of my life can drop out any time.  I don't take tomorrow for granted. I no longer assume a future (at least here).  I have gotten older..which implies vulnerability in itself. I know my days are numbered.....if not by cancer, then something else.  We are all born terminal.  We need to contemplate that and come to terms with it.  In that sense those of us with cancer are ahead of the game.