It's May!! A beautiful month, marking the end of Spring and giving us hints of Summer. It starts with May Day, rounds out with Memorial Day, and has Mother's Day planted in between. (For a lot of reasons, Mother's Day is not one of my favorite holidays ... but that's another blog all on its own.) May is filled with end of school years and graduations, saying good-byes and looking ahead to new beginnings. It is the month where the cool temps of Spring start to warm, reminding us that the heat of Summer is not far behind. It is bursting with vivid blankets of brightly colored flowers, and ... Achoo! did I mention pollen? May has something for everyone.
So why do I want to see the merry month of May painted black? Because May is Melanoma Awareness Month, and black is the awareness color associated with this evil disease. Melanoma is an often fatal form of skin cancer that seems to have a mind of its own. Melanoma is not full of hope like the month of May, although with new treatment options, hope is shining brighter. It is a disease that is dark, deadly, and foreboding, and unlike other cancers, the cases of melanoma are increasing. And it can, in many cases, be prevented. Melanoma needs to be stopped. Too many hearts have already been broken; too many lives have been shattered.
Although May is shared by many other diseases/disorders as an awareness month, it is melanoma that will get my support this May, as it does every month. You may or may not know that my daughter Jaime lost her life to melanoma when she was 29, so I have a very personal reason for giving this disease all my energy, time, and anger and for wearing the black ribbon to honor, remember, and respect my baby girl during May. She was diagnosed when she was 20 years old, back in 1998. Melanoma has progressed since that time from a disease I, and most people, had never heard of to one that is often in the news. I would love to see black as prominent during May as pink is during October for breast cancer awareness.
Jaime and I used to wait eagerly for her melanoma specialist to return from cancer conventions to learn of any new treatments ... but he was always empty handed. I know that he hated facing us with the same results from the previous years. The look on his face told us without him speaking that there was nothing new or nothing even close to being new. Now melanoma treatments are the highlights of those conventions, but it took a very long time ... too long for Jaime.
At one melanoma walk shortly after Jaime's death, I was asked if I was a survivor (they had special t-shirts for survivors). Without much thought, I said yes. I had fought that damn disease with every breath I had along side my brave daughter ... and yes, I did feel like I had survived even though Jaime did not. It certainly did not seem fair at all, but I had survived whether I wanted to or not. In the process though, I had lost my heart and my life as I had known it. My sons had lost the mother they once had. I was no longer me, thanks to melanoma. And I know that way too many of you reading this understand what I am saying. We MUST work harder to educate and advocate so that others will be spared the pain and anguish that we live with daily.
Your best chance of beating melanoma is not getting it in the first place! So you will be hearing lots more from me this month about melanoma, particularly on Melanoma Monday (May 5 in 2014). I will be sharing facts about melanoma, risk factors, prevention, and detection and information on the other more common forms of skin cancer. Why? Because you need to be armed with information to protect your family and yourselves. Melanoma is unforgiving ... it has no cure. Once melanoma has touched you, it is for life. The fear of a recurrence and the pain of surgeries and treatments involved ... or the fear of it ending your life ... never goes away. Melanoma never goes away!
Melanoma May ... to create awareness, to educate, to honor & remember
So as we focus our attention on the beautiful month of May and all it has to offer us, please support melanoma awareness and/or donate to melanoma research. Matter of fact, don't just support it in May ... it needs your support, your attention, your donations all year round.
For comprehensive information on melanoma, visit www.AIMatMelanoma.org
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.
April 6. It's Party Time! ... but where is the birthday girl? Today is my daughter Jaime's birthday. It should have been her 37th birthday celebration, but, thanks to her obsession with tanning beds and the melanoma that resulted, she will not be celebrating this one or any future birthdays. There will be no party, no presents, no birthday cake and candles. And she will remain 29 forever.
During an April blizzard in the Cleveland, Ohio, area in 1977, Jaime was born. She was my 10-month pregnancy. Her due date was actually on my birthday, March 16 ... which (insert Twilight Zone music here) also happens to be the date on which she died just 29 short years later. (See my blog Blowing Out Birthday Candles.) One of those things that makes you go hmmmm!
Anyway, I was more than ready to meet her. And it didn't take long ... about an hour. The doctor missed the delivery (and I refused to pay his full bill); Daddy missed it too because he was busy getting dressed in his delivery room gear. But between me, the nurse, and Jaime, we got the job done!
I was crying when my husband arrived in the delivery room, which alarmed him. But they were tears of joy that she was a girl ... a Jaime and not a Jacob! We didn't have sonograms in those days to tell us the sex of the baby ahead of the delivery, so it was always a surprise. Jaime had two very rambunctious brothers at home, one had just turned 3 years old and the other a little over 1, so I was overjoyed and felt blessed to be the recipient of a quiet, dainty, demure little girl. I would live in that fantasy for only a few months before it became crystal clear that she was every bit as wild as her brothers ... or maybe more so!
Now Jaime's birthdays weren't just birthdays ... they were BIRTHDAYS (and often extended to birthweeks and birthmonth).
April 6 was her special day, and everyone was expected to celebrate that day, even strangers ... although to Jaime there was no such thing as a stranger. She would start planning her birthday celebrations on April 7 for the next year ... reminding us that her birthday was only 364 days away. It was intense. Just ask her friends. And this enthusiasm for her day ... Jaime's Day ... continued throughout her short life. But she would only see 29 birthdays ... just 29.
When she turned 25, her new husband threw her a surprise birthday party. Unfortunately only a couple weeks before that (see more in the blog With This Ring), we discovered that her cancer had spread and she was rediagnosed with stage IV melanoma. There was not a dry eye at that party ... except for Jaime, who with her usual beautiful big smile told all in attendance to stop the crying because it wasn't like she was dying or anything. Always the optimist; always positive. But everyone there knew that she was, in fact, dying! We didn't know that she would only celebrate 4 more Jaime Days, but we knew those special days were limited.
Jaime's life ended just 3 weeks before her 30th birthday, and her death could have been prevented. If her vanity had not driven her into the tanning beds for a darker skin tone than what she was born with, she might have gotten to celebrate #30 and beyond. We will never know what might have been in Jaime's future because the melanoma caused by the excessive tanning bed UV radiation cut her life way too short.
Birthdays are not the only things that melanoma can steal from you. Melanoma can take pieces of your body, a chunk of tissue here or an eye or ovary there. It can take your energy and your hair. It can take your time and your job. It can take your friendships and relationships. It can take your security and peace of mind and restful sleep at night. It can take your ability to walk or talk or breathe. It can take your dreams and your future. It is an evil monster of a disease that will take whatever it wants whenever it wants and should never be invited into your life by frying your skin.
But Jaime had it right. Birthdays are special; they are precious. Celebrate each one and make lots of memories. And do what needs to be done to reach your next special day. Be proactive with your health. Get regular check-ups and skin checks, stop smoking, eat healthier, lose that extra weight, exercise, go for that mammogram, be sun smart ... and stay out of the damn tanning beds. Too many birthdays have been lost that didn't need to be!
This year and every year since April 6, 2007, we don't light birthday candles for Jaime Day ... we light a memorial candle. Sadly, the party has been cancelled.
Happy Birthday in Heaven, sweet baby girl!
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)
