Good People, Hard Times

If you look at Rachel's life, most of you would come up with a thought such as "Why does such bad things happen to good people like her"? If you look at Rachel's family, our marriage, and her friends, you could apply that question to each.

As you have heard me in these past few months; melanoma is a very difficult illness to endure and to die from. It is usually long lasting, it is relatively unpredictable, it's symptoms are quite painful, and it creates a lifestyle so stressful to a family and especially an individual that you could not possibly wish it onto your worst enemy with a clear conscience. Yet, Rachel and our family suffered through it. She went through the constant pain and uncertainty. We went through the hell of seeing her in pain without being able to ease it for her, like a parent, husband, or sibling wants to be able to do. She suffered and died. We suffered and are permanently scarred by the images of her suffering and death.

You would think we would all be inconsolable and depressed and all kinds of other bad ways due to the trauma of losing such a special woman; a daughter, wife, sister, aunt, and cousin. But we're not. I hear constantly how strong we are. How strong I am. "How do you do it"?, I am commonly asked.

Earlier in this blog, near the beginning, while discussing her surgery to discover the metastatic mass in her neck that started all of the recent illness, I mentioned the "3 F's": Faith, Family, and Friends. Imagine that almost a year later, and even after Rachel's passing, those "3 F's" still play a vital role in our cooperative strength.

I have always been a faithful person. I may have grown away from my Catholic roots as I grew older, but in this part of my life, being a young widower, my faith has never been stronger. I have seen numerous signs that tell me Rachel is still around me. My faith has brought me strength and peace in a time where most would think I was "let down" by God. I was enlightened by Sr. Vittoria of the Oblates in Youngstown, OH, who told me, "Jesus suffered and died very painfully, so that we may live. Rachel, in the ways of Jesus, did the same; she suffered and died so that others may live". It makes sense. By my passing on Rachel's story, I have received multiple letters, emails, messages, etc., telling me that a person has stopped tanning or has cracked down on their kids' tanning or has started making regular appointments with their dermatologist. She has started saving lives already; and with you and me passing the word of her story and what it means to everyone, along with applying her life's lessons to our own lives, she will save countless more.

I have been truly blessed with both my own family and Rachel's family. They have truly been a rock for me to fall back on during this ordeal. We had family come from all corners of the globe, literally. They have comforted me, they have supported me, and they have inspired me. I knew that when me and Rachel started dating back in 2001, I was not only falling in love with her but her family as well. We have cried together, we have laughed together, and together we have endured the bad and enjoyed the good of Rachel's life and death. The love given and received from family is something I hold closely to my heart; I know without it I would truly not be the man I am today, and since Rachels death, I would not be able to move on the way I am.

Friends, ah friends. Friends of mine, friends of Rachel's, friends of my family, friends of Rachel's family. Friends that I have made through all of my networking revolving around telling Rachel's story. Friends coming out of the woodwork who I haven't tlked to or seen in years. Friends that have given support from cards, letters, food, money, etc. I am truly overwhelmed by how many friends we have and how generous every one of them has been to help us through this. There are angels out there that have made this so much easier to deal with. They have taken our minds off of things, they have cried with us, they have filled our bellies! They have said masses for us, they have made donations in Rachel's name, and I could go on for hours. As I have said before, we are forever in debt to the kindness that has been bestowed on us; all I can say is that it will be reciprocated. I will do everything I can to be there for anyone I know.

Speaking of beaing there for someone...and I hate to close a post on such a sour and possibly sad note, but, I just found out this morning that someone who I have never met, but whose life I have followed for a few months and whose story is very similar to Rachel's is slowly succumbing to the same disease that took her life. Her name is Linda Ramirez. Her blog is: http://lindaramirez.blogspot.com/. Please take the time to pray for her and her family. I know, and most of you know, the pain they are going through. Never forget how melanoma has impacted your life and especially the lives of Rachel's and Linda's and their families' lives.

Melanoma News, Videos, and Links, etc.

I have found so much information in the last few years that helped me do what I could for Rachel. There are many websites and blogs that provide information, statistics, news, and support regarding melanoma. I will be from time to time doing what I can to share some of these with you. I will offer a bunch of links at the bottom of the post for you to check out...

One of the most interesting and similar cases of melanoma I have found is the story of Claire Oliver, a young woman who was diagnosed with melanoma at the age of 22 and died at the age of 27. Like Rachel, she tanned when she was younger. Like Rachel, she was a very beautiful young woman. Like Rachel she died five years after her initial diagnosis. Below is a short video that could have been shot from Rachel's hospital room or our living room at home. I can't lie to you, it is sad, and is bound to arise emotions in you. It is not long; maybe thirty seconds long or so. But it is powerful. I originally saw this in a post on Miss Melanoma's blog, which itself is one of my favorite resources. Check it out:


I know that has to scare some of you, and it should. No tan is worth dying so young.
Here are a few links for you to learn about melanoma and I will post more as I find them:

Melanoma Patients' Information Page (MPIP)
Melanoma Research Foundation
Melanoma International Foundation (MIF)
Rachel's Memorial on the MIF website (Thanks Lisa!)
National Council on Skin Cancer Prevention

This is just a short list of links; do a Google search on Melanoma or Melanoma Statistics and you will find literally thousands of pages.

One thing I do have to say in closing is a warm and heart-felt thank you to all of Rachel's caretakers at UPMC (Hillman Cancer Center and Shadyside), including her oncology team; Dr. Tarhini, Dr. Appleman, Jan, and Pam, Chuck and the nurses of CTRC; also the fine nurses over at 5-Pav; the Lindas, the Lauras, Faith, and of course Diana. Rachel's mom and I made a trip down there today to tell them how thankful we were for the treatment, the care, the work, the love, and the compassion all of you showed Rachel. You all truly became family to us.

I will be posting more in the near future talking about home health care, Hospice, and the amazing folks that work for those companies. They are people who are not normally thought of until it is too late. Hospice to many means a death sentence; it is not. But they are such a special group of indiviuals that make the job of family caretakers so much more managable. God bless you Linda(s) from UPMC Jefferson, Pam, Sabrina, Danielle, and all of the fine folks at Southern Care.

I will also be posting a few tidbits about lymphedema, a very much unknown condition often brought on by cancer treatments and surgeries. There are very special people like those at TuDor Physical Therapy that assist those that are aflicted with lymphedema.

Keep checking this blog for more stories, memories, education, warnings, and other things I think Rachel would want me to get out to all of you. Lately, my friends and family are trying to get our story put out on a nation and even international forum, like talk shows and news shows. Please, pass the word of our story and her struggle. The more people we can save through Rachel's life and death, the better!

The Tribute is in the Numbers

As I said before in my last entry, the support for Rach, her family, and I has been overwhelmingly amazing. Just to show you some of the numbers of people who have paid their respects to her, this is what I've been told so far:

- Over 2,000 hits on her obituary online at www.stewart-kyle.com
- Over 750 attendees at her calling hours (and many people had to wither leave due to the cold weather)
- Over 750 attendees at her funeral at St. Patrick's Catholic church in Hubbard, OH.
- Friends and family arrived from either right next door or from thousands of miles away.

These are just a few of the numerical tidbits that give me strength each day.

I want to tell you that I believe that Rachel should have a legacy, due to the amazing young woman she was. It was easy for her to impact many of us, whether we knew her or not. Now it is our turn to get the word out to the world as best we can. I need each of you to be an advocate for melanoma research and education. I went into a tanning salon today in Boardman, Ohio, just to see if there were any types of warnings about the dangers of the UVB rays that are emitted by the tanning beds. I looked for signs and for words in the enrollment packages. There was nothing. Sure, there were warnings about overexposure leading to burns, but nothing about how those UVB rays burn deeper due to their wavelength or that the overuse of tanning beds may lead to melanoma.

I think the world has to learn about her fight. The world needs to understand the dangers of tanning and how they can avoid melanoma even if they do go tanning. I would love to get a worldwide forum, like the Oprah Show or Good Morning America to tell her story and those stories of all of the victims (and survivors) or the horrible disease that is known as melanoma. Continue passing on information to your friends and families regarding these threats. I will be posting some links and videos in a few days showing other peoples' struggles as well as educational and informative sites.

Rachel impacted everyone she ever met. Let us ensure she has a much farther reaching impact. God Bless; make sure you are looking over each others' skin!

I Love you Rachel!

Amazing...

I have always said how amazing a person Rachel was. It is something that I brag about to everyone I talk to. As many of you have said in comments to this blog, emails to us, comments or messages on myspace or facebook, entries in her obituary on www.stewart-kyle.com, in flower arrangements and cards, etc., etc.; her smile, laugh, and attitude in life were all contagious to everyone who came into contact with her.

It touches my heart to hear from so many people whose lives she touched. I feel every tear that each and every one of you have shed for her and our behalf. As much as I know all of your prayers are going out to us - I want to let you know that every prayer is reciprocated right back on to you from us. We have been, are currently, and always will be truly blessed to have been in every one of your lives no matter what context it may have been through.

This blog has been a way for me to do many things; I have told our story, I have shared our troubles, and I have got many things off of my chest. I will continue to post entries to this blog; stories of our lives, our loves, and our memories will provide me with years of writing.

I can't thank all of you enough for your condolences and for your love for my "Muffin". May God bless each and every one of you; Rachel is with us now and forevermore in our hearts and memories (and knowing her she is probably making fun of all of us who have cried on her behalf!)

The Final Chapter

Family and friends and those who we may not know; it is with deep pain and profound sadness that I pass on to all of you that our Rachie has left us to be with God in Heaven.

She passed away early this morning at 3:45 am, with her family all present; we all were able to tell her goodbye and give her our love before she left. She squeezed my hand and looked right at me prior to passing; I knew she was saying goodbye.

For all of you who may be crying and reading this entry through tears, remember, she was in a lot of pain and discomfort due to the melanoma tumors and lymphedema. The treatment she was undergoing caused her a great deal of pain as well. Her passing has relieved her of all of that pain and discomfort. There is no more suffering for her to go through.

Through this past year, and through all of her 31 years, we met some amazing people. I think Rachel had a way of bringing out the amazing in everyone she met, even in some people she never met. She touched people all around the world; saved marriages, saved lives, and made an impression that everyone who knew her will remember her by.

To all of you who we were close to; her family, her girls, (her boys), her work-mates both at The Lube and in Japan, I offer my condolences and my assurance that she is so much better now. She loved you all more than you'll ever know; and even though she is not with us on Earth anymore, she is and will be in our hearts forever.

I want you all to take what has happened to her and use it for some lessons in life (not just to cut down or stop the tanning and checking out the skin for moles):

- Don't ever go to bed angry at someone, especially someone you love.
- Don't hold any grudges against anyone, no matter how bad they have hurt you.
- Don't waste time not telling those close to you how you feel. Say I love you as often as you can.
- Do have compassion for those not only who need it, but for everyone you meet.
- Do smile and laugh as much as possible.
- Do pass on your knowledge on to those who you work with. Being a mentor is something that can be one of the most rewarding jobs you do.

There are a thousand more of these I have been taught by my late wife. The gift of 7 years of being together is the best thing I have ever received in my lifetime. I am sure all of you who knew her in the last 31 years are thinking the same thing.

May God give you all his blessings and give you peace in this time of mourning.

Rest in Peace my Muffin, my Angel, my Sweet Girl.

Rachel Suzanne (Beasley) Possert
October 26, 1977 - January 15, 2009

It's Getting Harder, for All of Us

In the past week things have changed with Rach. Things that are worrying me. She has acquired a chest cold from someone and is having some trouble breathing from it. That cough and wheezing associated with it are making her nervous and in turn me as well. She has lost all of the strength in her legs to be able to hold up her frame to move even short distances; she fell when we were trying to move her from her laz-e-boy to her wheelchair yesterday, and luckily I was holding her and was strong enough to let her down softy so she didn't hurt anything. She is losing the ability to control her urination and bowels, and that presents her with not only a physical uncomfortableness that we must constantly help her with by changing undergarments and cleaning her (which requires her to stand up which as I said earlier is becoming increasingly difficult), but with an embarrassing emotional uncomfortableness that is the result of knowing that she messed herself.

We have initiated working with Hospice. We are working with Southern Care, who employs some amazing folks who have made this emotional transition in our lives a little more bearable. She'll have a nurse dedicated to her care (medications and medical care), a social worker available to answer questions for her and us and provide emotional support, a personal care assistant who will come and do things to make her comfortable, a companion to keep her company if and when all of us in the household have to leave to take care of things outside of the home, and a chaplain who can provide us with spiritual support during this difficult time.

As time goes on, it appears that this beast is having its way with my girl. Watching her go through this is harder and more painful than anything I have ever experienced before. I'm not sure how much longer she will be able to fight this, as weak and exhausted as she is. I cry even more now than I ever have, sometimes uncontrollably, especially at night. The thoughts and stresses and regrets that come along with seeing someone you love going through something like this are unexplainable.

I look into the future (even though I shouldn't) and see a lot of confusion and emptiness if she is not with me. Right now I need all of your prayers for her strength as well as mine and her family's; I need your prayers for her comfort and ability to relax and feel better no matter how that will happen; I need your prayers that no matter what God has in store for us we are able to deal with it. I keep telling myself that in the Lord's prayer, we are told: "Thy will be done". I keep reminding myself of that fact. I have no control here, and I know that is the case. All I can do is be here for her and do the best I can to keep her comfortable.

• For those of you who feel the need to go to the tanning salon, especially now during the winter since you can't "lay out" in order to get a tan, please consider getting a much safer spray-on tan or go buy some tanning cream or spray your friends or significant other can apply to you to give you that tan. Think of how much safer it is, please!
• I can't stress enough to each and every one of you how important it is to check yourself and have your friends or partners check your body and skin for moles that appear discolored or misshapen. Many of you have been taught to check your breasts or testicles for lumps or abnormalities in order to fend off cancer in them. Well, your skin needs to be checked just as robustly as anything else. You can get melanoma in the weirdest places, like in the creases of your labia, or in the crack of your butt, or in an armpit, or even under hair follicles on your head.

Bottom line, don't let yourself be affected by melanoma the way we have. Head it off before it gets a chance to mess up your life and the lives of your loved ones.

Why Are There So Many Damn Complications?

The hardest part of her melanoma isn't the cancer itself, it's the complications associated with it. She has been through so much in the last 10 months. Side effect, complication, infection, whatever you could imagine, has affected her.

First it was the vomiting and chills. The pain was next and still prevails even though she is on a fairly high level of constant morphine (She uses a PCA pump to administer her morphine at a level of 6.5 mg per hour with a bolus of 7 mg 4 times and hour). The interferon made her lose some considerable weight, about 50-60 lbs worth. You could see it in her face, in her neck, and especially, in my opinion, in her shoulders. Pictures of her from back in April and now are of a totally different woman. The lymphadema caused by the trauma to her lymphatic system (removal of some nodes and large tumors in others) have caused her to suffer from extreme lymphedema of the trunk and legs, to the tune of a 100 lbs weight gain. She is unrecognizable from the chest up due to loss of weight, and unrecognizable from the chest down due to the accumulation of fluid weight. As if it wasn't enough for her to be in pain from the tumors in her abdomen, the lymphedema has caused an incredible amount of uncomfortableness to her; the tightness of her skin and pressure on her organs is unbearable sometimes. She came down with C-Diff while admitted, which is a bacterial infection caused by too many anti-biotics killing the good bacteria in her GI tract; it results in severe diarrhea and cramping. She had dermititis on her legs from the weeping of the lymph fluid through her overtightened skin; it was itchy and painful. She has had three menstrual periods in the last month, whereas she did not have a period for eight months due to the VEGF-Trap clinical trial. It was spotty at first, took a couple day break, then came back heavy as hell, and then went away for a few days, and came back again, heavy as hell. The period(s) have caused pain in her back and lower abdomen on top of the pain from the tumors and lymphedema. The lymphedema makes the period worse pain-wise for her because of the internal swelling that keeps the discharge built up deep inside until it is released in a bathroom break. Sounds fun, huh?

Speaking of...does any of this sounds fun to you? Could you imagine seeing a loved one go through this, even if it is only one or two of those symptoms? And you still go tanning? God bless you. Please be smart and search the body (naked body) of your partner, kids, and parents if they are under your care. Melanoma doesn't care how young or old you are, what type of skin you have, what background you come from, or what color your hair is. I don't wish this amount of pain and suffering on anyone I may dislike; it is truly a living hell sometimes, seeing someone you love go through what Rach is going through right now.

I ask you all to continue your prayers for her. She needs them now more than ever. Thanks for those of you who read our story and may God bless you.

The Last Month (In Our Hell)

Rachel finished her 4 weeks of high dose interferon treatment on Friday, December 5th. The pain and nausea she had from the treatments seemed to be the only thing we couldn't handle. No matter what prescribed pain meds (Oxycodone, Oxycontin, etc.) and anti-nausea meds (Zofran, Kytril, etc.) we used, we could not get those two extreme side effects under control. She was nauseated for almost 3 1/2 weeks straight, which kept her from eating well. You could say she was on the verge of being malnourished. Her caloric intake was more than likely down to 200-300 a day, a fraction of what was normal for her. The pain and nausea came to an excrutiating head on the morning oImage via Wikipediaf December 8th. I called Dr. Tarhini's P.A., Jan, and told her what we had been experiencing and how we couldn't do anything for her, and she recommended we admit Rach. I totally agreed and brought her into UPMC that afternoon.

For the next week, the doctors at UPMC, made of of specialists in Internal Medicine, Oncology, G.I., and Cardiology all have their attention on Rach. They change meds and doses until they can find what works to ease her pain and nausea. They finally find that a PCA pump that doses her with a constant morphone drip and gives her the opportunity to dose herself with a bolus of morphine every 15 minutes does the trick on the pain (forthe most part). This brings her down from a pain level of 10 out of 10 to maybe a 5 out of 10. Through our 2.5 week stay, the drugs used to try and quell her nausea spells don't ever seem to work. Miraculously, in the last couple of days, the nausea seemed to disappear without any certain medical reason, at least not from any certain medicine. Unfortunately, due to the malnutrition she had and the fact that the hospital pumped her full of fluids, she developed a very serious case of lymphadema. Her weight increased by almost 75%, and she is now quite distended and uncomfortable in her lower abdomen and legs. They have her taking TPN (Total Parenteral Nutrition) to try and build her portien stores back up so she can try and kick the lymphadema.

Rachel was thankfully discharged on Christmas Eve. Upon returning home, we met with the nurse who taught me how to use the portable pumps that she uses to receive her morphine and TPN that keep her pain level manageable and provide her with nutrition, respectively. I have to prepare her PICC lines for infusion, I have to prepare the pump and IV bags, and I connect everything as needed. Along with the infusions, due to her weight increase due to the lymphadema, she is unable to make it to the restroom by herself, and needs someone to help her clean up afterward. I do all of this for her; I have to stay up during the night as she goes to the bathroom quite often at night. Neither one of us is able to get much sleep at all; sometimes we will go 3 nights on less than 4 hours total sleep. It's really quite miserable.

The lymphadema recently has been joined by a case of the weezies. It usually happens when she gets into "sleepy" mode when her breathing changes from awake mode to a deeper asleep mode. It makes me nervous. Is it just a cold? Is the lymphadema moving to her lungs? Are there any of the dreaded mets there? I hate this damn disease and everything associated with it.

As you can see from my list of symptoms she is going through hell right now. I continue to ask God why can't he have mercy on her and ease up a bit? Why all the damn symptoms and why are they all so extreme? I get so enraged at the pain and suffering she has to go through; I am most frustrated because their is little if anything I can do to alieviate them. My hell is watching her go through this. Mix that with my lack of sleep and constantly coming down with bugs (colds and flus, etc.) and I am in a hurt locker.

Like I said in my last post, is it worth it? Being a little darker or having some color to your skin might be nice to you, but are you ready to deal with the consequences? Is your family? Financially can you afford the costs of the medical care required? We have easily racked up over a quarter of a million dollars in medical bills that thankfully so far have been picked up by the military's health insurance, TRICARE. Think about this next time you lay on the side of the pool with Crisco rubbed on your back or when you go to the local tanning salon.