February is always a difficult time of year for me.
Not only is it dreary and cold but it was during February in 2007 that my 29-year-old daughter Jaime walked into the hospital not knowing that she would never walk out.
I took her to the emergency room for pain management for her Stage IV melanoma, not an uncommon thing for us to be doing at that point in time since the cancer had spread everywhere.
Usually we both fought for her to not be admitted (one time I even smuggled her out against doctor's orders) ... just get her pain to a manageable level and let us go back home ... but for some reason neither of us balked this time when they wanted to keep her overnight, that turned into just for the weekend, that turned into 5 weeks, that turned out to be the rest of her life.
That time was a nightmare for Jaime, me, and our family, knowing where we were headed but not wanting to believe it.
We were out of treatment options, which years ago were few; there was nothing left to try ... yet Jaime refused to quit fighting. When the doctor offered her hospice, she responded with, "Will they work to make me get better?" When he sadly shook his head no, her words were sharp and direct -- "Then hell no!"
We were in a free-fall, unable to control anything, feeling so helpless and hopeless but at the same time needing to stay strong and positive for Jaime. It was the ultimate conflict, but we wore our happy masks (I still have mine and wear it frequently!) for our girl.
We had successfully fought off this evil beast of a cancer for 9 years, but Jaime's little body had taken as much abuse as it could and there would be no more surgeries, no more pumping poison through her veins. As much as we all wanted to rewrite her story, in February 2007 the end was quickly approaching.
Somehow, no matter how hard I try to ignore these memories, every year at this time they creep back into my mind and remind me how much I HATE melanoma and how unfair life can be. I am reminded of that relentless fear that gripped us all that February, along with the love that surrounded us as we faced the stuff that horror movies are made of.
But one thing I never need to be reminded of is how much I love and miss our beautiful baby girl!
Melanoma Mama (Jaime's mom, Donna)
http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
I hate to be the one to break it to you ... but someday you will die! I absolutely guarantee that we all will eventually complete the circle of life and die, whether we like it or not and whether we are ready or not. But you can make that event more peaceful for you and your family by thinking about and discussing your end-of-life preferences ahead of time ... like NOW. Do it now ... before you are in the midst of an emergency or an emotion-packed situation.
Every year a date is designated as National Healthcare Decision Day, and that would be a great day to have THE discussion with your family. Or how about TODAY? Talk with your physician if you need more information ... but don't wait. It is something easy to put off because no one wants to think about or talk about your death or that of a loved one ... but don't delay it any longer.
Death does not discriminate
The discussion you will be having now about your end-of-life choices with your family is difficult, but decisions made in the heat of battle are painful beyond words. Just trust me on that!
You might think you are too young to be worrying about end-of-life stuff, but unfortunately you never know when it will be needed. Death doesn't just come to old people. The kids killed in a school bus accident didn't plan on dying so young; the kids killed in a high school shooting didn't dream that their lives would be so short; the young adults killed in a traffic accident didn't think their lives would abruptly stop. My Jaime didn't believe that cancer would end her life before her 30th birthday.
Legal responsibilities and beyond
Whether you are perfectly healthy or have a terminal illness, whether you are young (but older than 17) or old, the time to get your legal affairs in order is NOW! You need to get a will, even if very simple. And you need to get power of attorney papers drawn up (medical and financial) that state who you want making your medical and financial decisions for you if you are unable to do so.
It is also important to have a living will or advance directive, which should indicate how aggressive you want the intervention by medical providers to be and what type of limitations, if any, you want made on life-saving measures?
Depending on your circumstances you may not be able to think clearly at
the end of your life or you may not be able to communicate. So
communicate your choices and preferences now. Remember that these legal documents are not written in stone and can be changed as your life changes.
Also, as part of your plan, let your family know about other end-of-life things that concern you, like if you want to die at home if possible; let them know how you feel about being placed in hospice or a nursing home. Have you considered whether you want to be an organ donor if that is possible?
End-of-life wishes for after death
While you are at it, since this discussion is emotional already, discuss with your family what you would like to happen after your death. Be sure to have someone write down your wishes so there is no confusion later. It will save your family from making these decisions during a painful time when they want so badly to do what you would have wanted ... but they aren't sure what that is.
Do you want to cremated or buried? What would you like to happen with your ashes? Do you have a preference of where you want to be buried? Do you want the casket open or closed? Do you have any special preferences for your funeral, like songs, or flowers, or people to speak, or poems or scripture to be read? Is there some special clothing you want to be buried in or something special you want buried with you (a photo or memento, maybe)?
I know this all sounds morbid and depressing, but your family will appreciate having these guidelines when the time comes, especially since all family members may not agree with some of your choices. Many families today are complex mixtures of different religions and cultures, with customs or beliefs that may not agree with your wishes, so it is important to make your preferences known. It is, after all, YOUR death.
Why should you take action NOW?
I feel very strongly about this topic of end-of-life discussions and decisions because of my personal experience. Many of you know that my daughter Jaime died of melanoma when she was 29. She was diagnosed 9 years earlier so we had plenty of time to get her legal paperwork in order ... but she balked. She was not going to die, she would declare ... she was too young to die. Jaime was simply unable to face the fact that she might ever need these legal documents; it was part of her coping mechanism. Many times over the years we tried to convince her that it would not hurt to have these legalities taken care of and then filed away until she died of old age. But she resisted.
Finally in the hospital during her last few weeks of life, her oncologist brought the subject up once again because he needed a legal medical power of attorney. She was furious with the doctor because to talk about end-of-life decisions at that point, in her mind, meant she was giving up ... and she had no plans to do that.
However, her daddy and I knew it was necessary and asked our family attorney to come to her bedside. It was a horrible experience at its best!! I had to ask the nurses to withhold Jaime's pain medication until after the attorney left so she would be lucid enough to sign the documents. At this point in time, when she was not ready to give up hope, we were shoving documents in her face about her impending death. Everyone was in tears, including the attorney. Wow, if we had only insisted that she take care of this before things got to this point.
Following that, Jaime and I were able to talk about her wishes for after her death, and I think she must have been happy with the special "going away" party that we arranged for her. I am so thankful that I had her guidance with that, but it wouldn't have happened if we had not had THE discussion, as painful as it was.
Please take advantage of National Heathcare Decision Day or whatever day you choose to make your end-of-life decisions. It does not mean that you are near death or even facing it in the next 100 years. It does mean, however, that you are smart and prepared and care about your family by taking that burden off their shoulders. Just do it ... make your plan and then file it away and move on with living your life.
March 16, 2007. It was a beautiful, warm and sunny Spring day. It was my birthday. It was a perfect day for celebration ... but it was to be the worst day of my life. On that date many years before, I had taken my first breath; on that same date 60 years later, my only daughter Jaime would take her last.
The nightmare begins
My baby girl was diagnosed with melanoma when she was 20 years old, after years of searching for the perfect tan with the help of tanning beds. She was a frequent fryer and paid the ultimate price. A mole on her back seemed to be where this cancer wanted to set up shop. That damn mole caused more pain, suffering, and broken hearts than I can find words to describe.
Initially she was determined to be in an early stage of melanoma, and we were told after 3 years that she was cured. NOT! I know now that you are never "cured" of melanoma. If you are lucky, it becomes inactive until something wakes it up at a later date. February 2002 Jaime's cancer awakened (see my blog With This Ring ...), and our nightmare began. She was in the final stage, Stage IV. Her cancer had spread, and there was no stopping it. Jaime faced this challenge with amazing strength and courage and a positive attitude, which she also demanded from those around her ... and always with a smile on her face. She was so determined that she would not die from this horrific disease that we were all convinced that she would indeed beat it. We chased it around her little body for 5 years with surgeries, chemotherapy, radiation, every treatment option available ... until ... until March 16, 2007.
Sleep, my little one, sleep
Her last night was a good one, considering. Her brother Ben and I slept by her side at the hospital that night. I guess the word "slept" isn't really the best word choice. We watched her tiny body in the huge hospital bed move up and down gently with each breath she took, like I used to watch all my babies as they slept. She was curled up in a ball, just like she liked to sleep and hadn't been able to for many months because of breathing problems caused by tumors pressing on whatever they were pressing on. We listened to her softly chattering away. We couldn't make out what she was saying, but her sweet child-like tone was assurance that she was enjoying the conversation. And then she would giggle. And that giggle is the last sound I heard her make ...
The end of hope
By the following morning (Friday, March 16), Jaime had drifted into a coma. Her oncologist came to see her in her hospital room as he did every morning and evening. He wasn't on call that weekend, and without giving it much thought, I said, "Well, see you on Monday." He looked at me with the saddest of looks and shook his head no. The air seemed to have been sucked out of the room, and it hit me ... we will not be here on Monday! I think that is the first time that I really allowed myself to understand that we were at the end. All the treatments, medications, scans and reports, doctor office and hospital visits, clinical trials, barf bags, cases of Ensure, doctors and nurses, new friends made through this journey, old friends lost who didn't understand, a new melanoma vocabulary, the dark sense of humor we had developed to help us cope, all the fear, all the pain, all the tears, all the prayers had lead us to this point. There was no more room for hope ... the hope we had clung to for 9 years; the hope Jaime demanded that we have.
Happy Birthday, Mom
Then my son gently reminded me that it was my birthday. I told Jaime that I would love for her to open her eyes and wish me a Happy Birthday ... but if she couldn't, then the best birthday gift she could give me would be to leave her melanoma-battered body behind and just fly away. And off she flew ...
But Jaime's story doesn't end there. I am not telling you her story to solicit sympathy but to make you aware of the torture that tanning beds and melanoma has caused our family and friends. I am telling you Jaime's story because she can no longer do so ... and it is a story you need to hear. Her story has been featured on local and national TV news, radio, magazines, newspapers, public service announcements (http://t.co/YrV1At9qTD) ... and even in theaters. Almost every lawmaker across the country in any state considering tanning bed legislation has heard her story, along with the FDA and the CDC. Her story is told on Facebook and Twitter and at melanoma walks and events. A scholarship at her alma mater University of North Texas has been started in her name, and her professors tell her story to their young students. Her face has even smiled down from melanoma awareness billboards! Don't count her out because she is not done yet.
On March 16, 2007 ... like blowing out candles on a birthday cake, the light of a young life, my sweet Jaime's life, flickered and was gone. And all our lives have been darker without her laughter, her joy, her courage, her love, and her light. We miss you, Jaime girl, with every beat of our hearts!
Melanoma Mama (Jaime's mom, Donna)
Twitter: @melanoma_mama
Facebook: http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
We were in a free-fall, unable to control anything, feeling so helpless and hopeless but at the same time needing to stay strong and positive for Jaime. It was the ultimate conflict, but we wore our happy masks (I still have mine and wear it frequently!) for our girl. 
