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, November 28, 2009

More Waiting

In the spirit of "Waiting Room", my family and I have been in one lately. My mom had a stroke a few weeks ago, followed by several more strokes which left her very disabled. She was hospitalized twice. She yesterday had another massive stroke and is in the hospital again. She is not conscious or expected to survive.

I traveled to see her the last two times she was hospitalized recently. I knew she was at very high risk for more strokes, and I knew the last time I saw her during her second recent hospitalization that it was probably the last time I would see her alive...so I made sure to tell her I loved her and goodbye then.

I feel sad for what she has suffered, that she had become disabled and
intermittently confused related to her stokes. She had also become very depressed as a result of her recent traumas, and I know personally that the emotional struggles are the worst part of any physical illness. But as she is in the last waiting room of her life, I really do not grieve for her, or for myself. I am sure some would see me as callous. But I know when she leaves this world she will finally be at her real home, and will be whole and happy and will have many to greet her. She will never hurt or struggle again. I would rather see her there than enduring months, maybe years, rehabilitating from her stokes in a nursing home, away from the home she loved and the things she loved to do. I will miss her, but only for awhile, it's a temporary separation.

Being in the cancer community for so long, I have seen very many lose their battles. Many who were young and still raising children, many who had careers they loved and goals they wanted to achieve in the remaining decades they thought they would have. I was recently in contact with a family who lost their 23 year old son to a cancer similar to ours. I've communicated with a 19 year old appendix cancer patient. I worked once with a family who had lost two children both in their early twenties to two different types of cancer, brain cancer and lymphoma over just a two year period. A five year old at our church died of brain cancer in spite of overwhelming prayer support.

I had trouble dealing with all of that for a long time, so read many books about heaven and the life after this one. I also worked for a hospice as a volunteer for many month in trying to come to terms with it. I talked to many patients about their feelings about their impending death. Their fears, their hopes, their struggles. Patients who were relieved to finally have someone they could talk to about their impending death.

As a nurse, I've held the hands of many who were actively dying as they have passed from this life into the next, some who I think waited for family members to leave as they didn't want to put their loved ones through the trauma of witnessing their death. I've let patients who were barely living know that they had permission to leave, to move on to their next life, to stop suffering and lingering in the dying state...that it was okay, they could go home. I've also asked families to give their dying loved ones that permission. I've supported families who have chosen withhold food and hydration that would only prolong death and not life in a person who was at the end of their journey. So I am very familiar with end-of-life issues.

Once when I was waiting in the "CT scan waiting room" wondering if I had an impending death sentence, I met a woman, now 70, who in her 20s had a near death experience when she was very ill. She told me in detail about the heaven she went to during that experience. She said when she woke up in a hospital room later, she cried for three days because she so wanted to go back, she preferred the heaven she had experienced to living in this world, even though she was a young mother with small children then. Now at 70 she still longs to go back; she's been waiting for decades, but decided she must have work to do here, that she has been in this life's waiting room and not where she feels she really belongs for a reason. She told me not to be nervous, I had nothing to fear even if my CT results were not good.

In the end I developed a profound belief in heaven. A surety that life doesn't end here, that this life is only a short and temporary one in comparison to the eternity we will one day live in. Death isn't an end, it is a transition. It's a transition all of us will one day make. I personally, though I believe in heaven and a life after this one, still fear the unknown of that transition. But I now think it will be like many other transitions in my life that I was fearful of that turned out in the end to be enlightening and empowering. Transitions I'm so glad I made.

Interesting thing,the five year old in my church who died of brain cancer....he'd become physically but not mentally disabled. When he was in a wheelchair, he one day told his mom "Look over there, Tyler is back!!". Tyler was a dog they had put to sleep six months earlier. He then had a very animated conversation with someone no one else could see, and he smiled during that conversation. Shortly after he lost consciousness; he died a few days later. His transition. Many in hospice had similar experiences, many saw people they knew coming to take them home near the end.

For those who are at the crossroad of this transition, I can recommend several of the books I've read during my sojourn:

In Light of Eternity, by Randy Alcorn
Crossing the Threshold of Eternity: What the Dying Can Teach the Living, by Robert Wise
Heaven...Your Real Home, by Joanie Erickson Tada (who has been unable to move her arms or legs for four decades after a swimming accident as a teenager)
On Life After Death, by Elizabeth Kubler-Ross (who spent decades working with those who were dying)
Heaven and the Afterlife by James Garlow
The Shack, by William Young
When There is No Miracle, by Robert Wise

Monday, November 16, 2009

The Waiting Room

At church yesterday the sermon topic was "the waiting room" and how difficult it is for us to wait, and how often God doesn't answer our prayers and requests as quickly as we would like. Or how sometimes he doesn't seem to be answering them at all. How sometimes, as in Abraham and Sarah's story, we lose patience and take things into our own hands in the absence of an answer. We struggle with our faith, as they did.

Cancer can be the ultimate waiting room. We wait for a diagnosis and then to learn more about our diagnosis. We wait for test results. Then we are in the ultimate waiting room after treatment, waiting to find out if our cancer will return and if we will ultimately survive our cancer. We wait for years wondering if we are safe, if we have beaten cancer. I know some who have had recurrences at 5, 6, 8 and even 10 years out from their original diagnosis, so feeling "safe" even as time passes is difficult. We are in the cancer "waiting room" for a long time. It's hard to be in the waiting room, it's painful.

The point was also made in the sermon, that in our society we want immediate answers. We are the fast food generation, we know what we want and expect it immediately. And God doesn't seem to work that way. We know many who are not healed and who lose their battles in spite of overwhelming prayer support. The point was made in the sermon that maybe while we want the transaction (I pray for healing and should get healing in return), maybe it is actually the transformation that occurs in others and in ourselves while we are waiting that is key. That there is a purpose to the waiting room. Even for those who lose their battles.

I truly believe that those who lose their battles are finally healthy and free and without pain, and that they will be whole forever. They are forever out of the cancer waiting room. And I truly believe that though we cannot see it from our immediate perspective, there are positive effects from our struggle in those who surround us and survive us. Maybe it's not about us, maybe there is a bigger picture we can't see from here.

I still always think of Abraham Lincoln. I read his biography once...he lost his mother when he was a young boy and had a very distant relationship with his father. Both of his siblings died young. He lost his first romantic love to typhoid fever. He lost 3 of his 4 children at young ages, only one of his children lived to adulthood. I can't help but think that all of the pain he endured, that his many, many hours in life's "waiting room" somehow molded his character to help him achieve the great things he did for so many people and for our nation. I have a kind of hobby, I love to read biography's of those who achieve greatness; many have suffered extraordinary pain and have spent much time in life's waiting room.

I truly believe there is a bigger purpose we can't see from here, but that we will one day understand. One day we will understand the purpose of pain in this very short life of ours. I love the analogy of a tapestry. From the back it is loose and disorganized threads that form no picture, but when viewed from the front it is a beautiful work of art, and the contrast of the dark threads are what makes the art beautiful.

I look forward to one day seeing the front side of the tapestry of this life.

Saturday, November 7, 2009

Half a century

I turned 50 today. It's a milestone...half a century old, 25 years past my favorite age, 25. I loved being 25 as I was educated, had a good job, was independent and self-supporting, didn't feel vulnerable, and still felt I had lots of time to change careers, dream new dreams, embark on new adventures, pursue new relationships. I knew who I was by then and had learned from my mistakes. I was physically healthy and felt there was nothing I couldn't do.

Turning fifty feels like there is less time to dream dreams and embark on new adventures, I have to choose more wisely now. I take less for granted. I am more spiritual. I appreciate more. I choose goals and relationships more carefully. I no longer feel I can have everything, so I choose more carefully what I want. I am more careful as to how I spend my time and who I spend my time with.

I had a 30 crisis, but I don't think I'll have a 50 crisis. I am too grateful to have reached this milestone. In the cancer world I know many who dream of being able to reach the half century mark, who dream of being able to raise their kids to adulthood, to realize dreams. One 23 year old lost his battle with colon cancer recently...diagnosed at 21 he spent the last two years of his life ferociously battling the disease. He had so many dreams he will not realize. Another friend recently died of my same cancer...she was diagnosed when she was 36 and fought a very long and hard battle with signet ring appendiceal cancer for the last four years of her life. She didn't live to see her children become adults, they are young teens. She didn't get to be 50; she'd just turned 40 when she lost her battle. She would have loved to have celebrated the 50 year landmark.

So I feel only gratitude at turning 50. I've lived half a centuy; I have a good marriage of 22 years, I have been unconditionally loved and supported by my husband for over two decades. I was able to have children and to raise them to adulthood. I was able to have a best friend and confidant for 30 years. I was able to do meaningful things, I hope, with my life for 50 years.

I am blessed to be 50....no crisis for me. But I do feel a need to make my time here count. To be worthy of having lived for 50 years. I feel humble and grateful.