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, December 27, 2007

Testing.......

I was feeling just a bit unsettled today, I have another pending CT scan. I've had that on my mind for awhile. The requisition for the scan has been on a bulletin board in my room waiting for me to schedule it.

Even 6 1/2 years out, CT scans make me uncomfortable. CT scans make us all feel vulnerable, they keep us in limbo.

I'm in the cancer community now and talk to cancer patients daily. I am familiar with cancer recurrences. I have relationships with people who are dying of cancer. Cancer is a sneaky and vicious disease. Once in awhile I hear of a cancer patient who has a recurrence after 5 years. I know too much to become too complacent about cancer.

My doctors keep checking...and checking...and checking my tumor markers. They've been checking them every few months for years now. Just now one is elevated, just a bit, for the first time. So I decided to go ahead and schedule the scan.

It seems no one uses the "cure" word nowadays, we are in "long term remission". That phrase makes it sound as if we still have cancer, that it just isn't active at the moment......implying that it can recur at any time. Implying that we can never move beyond oncology appointments and cancer follow-up testing.

It isn't as bad for me as it used to be. I used to be terrified of impending CT results. But CT scans still make me edgy.

I hope someday someone will use the word "cure" in regards to my cancer. That I will be able to stop being tested for cancer. A friend of mine is 83, she survived colon cancer diagnosed at age 40. She just quit her annual colonoscopies at age 80. Forty years of annual colonoscopies.

The testing goes on, and on, and on.....

Monday, December 24, 2007

Christmas Milestones

I think reaching the milestone of my daughter's 18th birthday has made me appreciate other milestones. This year I truly appreciated Christmas Eve with my husband's family...my family.

It was 22 years ago when I celebrated Christmas Eve with them for the first time. I felt a little bit overwhelmed then. I'd come from a family where it was just mom, dad and the kids for holidays in our home. Quiet, dignified celebrations.

My husband's big Polish family has always celebrated Christmas on Christmas Eve at his parent's house. Lots of people are there.....his parents and all of their kids and their grandkids, now even the grandkid's kids--and all of the spouses. Anyone else who happens to need a place to celebrate is welcomed too, even if they are no relation at all. Tons of food, tons of decorations, Santa comes, the kids sometimes do skits, sometimes you have to sing a Christmas carol to the crowd before Santa will give you your present, sometimes there's a white elephant giveaway. Kind of corny stuff. Kind of loud, kind of overwhelming. At least it was for me the first many years I spent the holiday at their house. It took me some getting used to.

But this year was my 22nd Christmas celebration with them. I don't feel like an in-law anymore. I am a daughter and a sister, "in-law" doesn't seem to apply nowadays. I kind of appreciated the corny stuff, the crowd, the overabundence.......and even the noise.

I talked to adults during the evening who now have their own small children. I remembered these same adults as toddlers when I first met them 22 Christmases ago. My husband and I were not yet married and I had no children the first time I spent the holiday with them. Two children and a few adults have died since I've been a part of the family. I remembered those who were not there this year especially.

This year I truly celebrated all of them who have become a part of my life over the last few decades. I celebrated the life changes we've all shared through the years, the support they have been to myself and to my own family, the support I hope I've provided to some of them.

They've started something new this year, Sharing the Oplatek, a Polish tradition. White wafers, like those used for Holy Communion, are shared with each person present. We all broke off a piece of each other's wafer as we wished each other a Merry Christmas. It was really a sweet moment.

This year especially I felt truly proud to be a part of the history of this family, to belong and to be a part of their lives and their traditions. I appreciated that I've had all of these years to share with them. All of the milestones.

Thursday, December 13, 2007

Celebration!!!!!!

I am so happy, so excited and so grateful. My eldest daughter turned 18 on Tuesday. I can't begin to tell you how great that felt. It was a huge landmark for both of us.

I felt like celebrating that whole day from the moment I woke up, even when she was in school. I spent the day reliving all of the phases of her life in my mind, reviewing my mental photos of her as an infant in a carrier, as a two year old, a preschooler, attending grade school, junior high school, first time driving a car, first date, first boyfriend, first professional concert and now her senior year of high school. I got to be here for all of that.

I was diagnosed with stage 4 cancer when she was 11 years old. I was not expected to survive. I was not expected to see my kids grow to adulthood. My prayer then was to live to see both of my kids reach 18 years old and graduate from high school. It's a very common prayer of women diagnosed with cancer when they have young children. We all pray for the same thing.

I just wanted to be here to support and love my kids at least until they reached adulthood. At least until they were ready and able to begin their own lives independent of me. An eighteenth birthday was a very long way away then, living that long was a tall order.

But we made it, both of us. What a gift. What a cause for celebration. What a miracle.....

Saturday, December 8, 2007

Death on my doorstep

I've recently been dealing with death on several fronts.

I just traveled to Texas and met for the first time a young woman I've communicated with for over a year who had my same type of appendix cancer, signet ring. She died of the disease just hours after I finally met her. When I came home my "adopted" son was talking to me about the father he loves and misses but has no memory of, his father died in an accident when he was only 3 years old. Another 88 year old friend of mine died this week, and another appendix cancer patient I communicate with lost a family member in a car accident this morning, the victim left behind a one-year-old daughter.

But learning of these deaths has not made me terribly sad.

The 88 year old woman outlived her husband by thirty years and outlived all of her siblings. She lived alone, her only son lived in another town. She'd had two hips replaced, had a pacemaker, and had been injured once recently in a home fall while climbing a ladder to change a light bulb, but she always proudly maintained her home and her independence. Her house was always full of green plants, she was always crocheting and tatting gifts for people, she loved to do jigsaw puzzles, and she had lots of us who loved her and loved to be around her. She had more wrinkles than I'd ever seen on a face, but she had a contagious joy about her that she passed on to everyone who saw her, even those who spent just a few minutes with her. She was special and had inspired me for years.

My "adopted" son answers some questi0ns for me.......my biggest struggle is understanding why those who are raising young children are taken from this world, why some don't live long enough for their children to even remember them. But my son knows of and loves the father he doesn't remember. His dad still influences his life in a positive way, and because of the father he misses, he is a more loving, caring, sensitive and spiritual teen than most I've met. He's one of my favorite people to be around. I'm sure the loss of his dad has played a big part in who he has become.

The woman who died of appendix cancer had been in pain, she was young, but I know she is home too and no longer suffering. She's forever done with CT scans and labs and chemo. We'll have a lot more fun the next time I meet her.

And I don't understand why the young mother was taken, but I have to believe there is a plan, and it truly enhances what I already know, that none of us is promised tomorrow. Today is what counts. Just recently this woman was helping an appendix cancer patient recover from major surgery feeling sure of her future. But she was a physician, I'm sure she knew that futures on this earth are fragile. All of us who work in health care know tomorrow is tentative.

Being a cancer survivor and being in the cancer community for several years has really made death seem less scary and less unfair to me, though. It truly seems to me now an integral and natural part of life. Understanding in every sense that my time here is limited now, I use my time much more wisely.

And I have developed a strong faith that when I am done here, I will finally and truly go home. Sadness for me is always now tempered with hope.