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.

Saturday, June 25, 2011

Did I tell you this story?

Post cancer, I had had so many doctors (16-17 at one count), and spent so much time in medical facilities for appointments,scans, tests and chemo, that when I was ready to surface, the last place I wanted to be was a medical facility (hard to go back to work under those circumstances when you are a nurse).  So I didn't go right back to work.  But I am used to being busy, and felt I needed to do something  good with my life, so I played piano a lot for institutionalized seniors a lot (was great to be around people who got to be OLD!!!).  Even though the elderly had deteriorating bodies and used canes and walkers, they were alive in their 80s!!!  I dreamed of being able to get old, even if it meant using canes and walkers and having wrinkles.

I also delivered Meals on Wheels to the elderly and handicapped (nothing new, I'd done that for many years prior).  But I felt I still needed to do something more.  A soup kitchen opened up in a church near my home, so one day I just showed up and asked if they needed help.  They said "sure!". They really had every thing covered and didn't need me to do much, but I stayed anyway, it was a good thing.  Since there wasn't a lot that needed doing, and they had a piano in the hall, I played piano for those eating, it gave me something to do.

Over time I got a little more involved in the soup kitchen.  Then one day, the person who managed the soup kitchen said she would be out of town for 6 weeks, and the kitchen would close unless some one offered to take charge.   Don't know what got into me, but I said I'd do it.  I created soup recipes from compiled recipes on-line (I don't like to cook!)...at any rate, the soup kitchen did very well the 6 weeks I ran it.  Then the  woman who ran it came back and said she was moving to another state...did anyone want to take it over?  Since I'd done it for 6 weeks, I thought,why not?

I bought the groceries with the same frugalness I used at home.  We had a basket there...."donations accepted but not expected".  Since it was open to the public, not just the poor and needy,we had many come.  Our numbers increased from 30 to over 100.   I still played dining music for the guests, requests included.  We all sang happy birthday to anyone who came on their birthday.  It was a great thing! We had the homeless, the poor, the lonely and even business men in suits come as they enjoyed the food (they left big donations in the basket).   My kids volunteered there in the summers. The soup was so popular we even published a free soup recipe booklet for the guests.

We ran into a problem, as I shopped cheap and many donated....we began to turn a profit!!!  It was a kind of crisis! I called a meeting of the soup kitchen staff about our profit problem.  We decided to donate the profits monthly to the needy.  We donated to a family whose child needed surgery, to a woman newly diagnosed with cancer, to the Haitians after the earthquake, we put together 30 Thanksgiving baskets for the needy.

A local columnist went incognito to all of the soup kitchens in our  county and then published an article with "soup kitchen reviews"...ours came out on top!!!  He was intrigued by me and later interviewed me for an article...it was great and helped get information out about appendix cancer.

The woman who started the soup kitchen moved back and wanted to take it over again, so I gave it back to her.  I volunteered there still for a few years, then got busy with work (back to the hospitals!).

My church just bought a new building with a full  kitchen and dining area...I miss my soup kitchen so offered to start one there!  Don't know if they'll take me up on it, but I hope so!  I know how to make mass quantities of 15 different soups!

Sunday, June 19, 2011

Ten years post diagnosis....

I am ten years post my life-changing cancer diagnosis.  I am so,so very grateful I lived to raise my kids to adulthood...they were 10 and 11 when I was diagnosed and are now productive adult members of society.  They need me much less than they did then, and for that I am grateful.  I am not as central in their lives now, and for me that is a good thing. I celebrated vs. dreaded their leaving the nest...it was a gift for them to leave me and not for me to leave them.  My perspective is different than most parents.

Tonight I went to the Caring Bridge site of an appendix cancer patient I've followed for a few years.  We've communicated on and off for several years, but not recently.  She also had signet ring appendiceal cancer and had been through 2 HIPEC procedures..with recurrences following both.  I learned she died last month at the age of 33.  So young.  I've developed friendships with several appendix cancer patients who have lost their battles in the end.  I had a close friend my age, also a nurse, who was in med school and doing well.  She had a lower grade appendix cancer than I had and so much to live for...she also lost her battle a year ago.  I had another appendix cancer friend from the Philippines who had only been married for 5 years and who had two very young children...she also lost her battle.  We were close, we communicated frequently even as she was dying.  She sent me gifts that to this day I value.  I think of her every time I look at them.  I've lost many friends.  I don't know why I survived and they didn't.  When I finally get to heaven, there are so many I want to meet and spend time with.  I wish things had turned out differently.  But I also know of many survivors, like myself.

I was researching survivor guilt on wiki tonight.  I feel badly that I survived when others haven't, but I don't think I have survivor guilt.  During the sermon at my church today,they spoke of a woman who experienced the terrible poverty of those she met in Africa while on a mission trip. She said she didn't feel guilty for her relative wealth at home,though...it was a gift from God. But she said she knew how important to her to be grateful for that gift.  I think I'm much the same....and I think I need to use the gift given to me to help others.  I do try.  I'm not interested in Facebook on a personal level, but my website designers created a Facebook page for my Appendix Cancer Connection organization, and it has become a support group of sorts for those diagnosed, for which I am very grateful. You can check it out at Appendix Cancer Connection Facebook.

Just for fun, this funny youtube clip was presented at my church today (the topic today was gratitude)....and I could totally relate, I grew up with the black rotary phones!  I also still always request a window seat on flights...I still feel the "wow" factor when I see the clouds and our country from the air!  Check it out: Everything's Amazing and Nobody's Happy, it will make you smile!!  We have so much to be grateful for!