Author: Joseph Belluck
Friends and Family Gather to Remember Mesothelioma Patient Don Smitley
Jennifer Gelsick has been writing blogs about life for her family as her father, Don Smitley, battled mesothelioma. Sadly, Mr. Smitley passed away last month. Jennifer returns to MesotheliomaHelp with a different perspective on the impact of mesothelioma. She hopes her new perspective will help those with mesothelioma live for the day and cherish every moment of life.
As I sit down to write, I am now a completely different person writing from a different place. I have joined the part of the mesothelioma community who has lost a loved one to this terrible disease.
My amazing father, Donnie Smitley, passed away on October 15, 2013, at the age of 57. These last few weeks have been a blur for my family and for me as we attempt to adjust to this “new normal” of life without him. Don’t get me wrong, I still feel him with me, just in a different way. We are coping as best we can and appreciate the expressions of love and support that we have received more than you can imagine.
The support began immediately after I got the call from my husband telling me that Dad had stopped breathing. A friend who lives close by came to be with me until Mike got home. Another friend drove us the three hours to my parent’s house. Countless people brought food, sent cards and flowers, and visited us. The outpouring of love was overwhelming, but in a good way.
The days of the viewing were full of family members, friends, and acquaintances sharing condolences and wonderful stories of my Dad. It was amazing to me to see the huge number of people who recognized how special Dad really was. At the funeral, bluegrass music was sung, stories were shared, and an amazing message was delivered. The main point: Dad was a man of relationships. How true – his relationships with his family, friends, and most importantly, God.
Throughout the three days we spent at the funeral home and at the Church, I realized that with someone as amazing as Dad, we shouldn’t have been surprised that God needed him back so soon. We should just be grateful that He let us keep him as long as He did. Dad was truly an angel here on earth, and now has his wings in Heaven.
Know more about Mesothelioma and how you can deal with it.
Read Up on Mesothelioma During Health Literacy Month
October is Health Literacy Month, a time to focus on finding ways to more clearly communicate health information. This year’s theme is, “Be a literacy hero.” Many people ranging from lay people to nurses and doctors have done incredible things to promote this cause.
Throughout the last year and a half, my family has been provided with a lot of information about mesothelioma, treatments, clinical trials and the like. Some pieces of literature seemed easy to understand, others were much more complex. Thankfully, Dad has some of the most amazing doctors in the world who are knowledgeable and kind and are willing to sit with us and answer any questions that we may have.
There are many different resources readily available to those seeking answers or doing some of their own studies. Many internet websites are credible and valid; just research them a bit before you take their words as gold. There are podcasts, seminars, and workshops for all different topics that you can attend. Books abound in information, but again, be sure to check how current the data is. New research is done every day! Also, be sure to separate opinion pieces from literature based on hard facts.
Writing this blog and reading the others on this site have been a great source of information for me. I have learned about new studies, treatments, and ways to cope with a mesothelioma diagnosis. The great saying that “knowledge is power” rings true once again. I hope that I have been able to provide some hope and useful tips through this forum; please feel free to contact me any time if I can help you!
Words of Faith and Hope for Mesothelioma Families by Jennifer Gelsick
When asked to write a message for mesothelioma patients and their families, it proved to be rather difficult for me. I racked my brain and prayed for the right words to say. I don’t want to patronize anyone with seemingly meaningless platitudes like, “I know how you feel” or “I’ve been there.” Even though I have been there, I don’t know exactly how you feel, as everyone deals with each situation in a different and unique way. The best thing I can say is that there is hope.
Going through my Dad’s diagnosis of pleural mesothelioma in January of 2012, I ran the gamut of emotions: fear, sadness, confusion, and anger. These turned to thankfulness, faith, and peace after a while. Throughout everything, I found hope.
Hope, for me, came in many different forms. Hope came from Jeff Rzepka who told us about a doctor in NYC who could help Dad. Hope came from this amazing doctor, Dr. Harvey Pass, who performed Dad’s surgery. Hope came from his scans saying he was cancer free. Hope came when the scan wasn’t perfect, but Dad could have radiation. Hope comes with every new day.
Jeremiah 29:11 says: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” This hope and the future God promises, continue to get me through my toughest times, the moments of darkness when I feel as though nothing is going right. Remember, God has a plan, and everything happens according to His plan and His will.
Please know that there is no problem too small or too large for God to handle. Prayer and faith can move mountains and my family has seen that first hand. Don’t give up hope. God’s plan is perfect.
Dealing with Mesothelioma and The Reality of this Disease
The sad thing about having any illness, be it cancer or arthritis, is that no one tells you how it will really affect you. Having mesothelioma is no different. There are thousands of websites out there telling you how you will be diagnosed, the outcome of the cancer and the treatments available, but no one tells you the ins and outs of what to really expect.
I have tried over the years to convey how I am feeling through my blog – “Mesothelioma – Jan’s Journey.” I didn’t write my blog when I was originally diagnosed or when I was on chemotherapy for the first two cycles. In a way I am pleased I didn’t because I went through a living hell, but that was me, not everyone is the same. Unfortunately, a lot of sites don’t truly represent that you may go through this or that.
I know there are several discussion groups on line these days, boy do I wish they had been there in my early days. The internet has helped many get answers, but still the sites we hope will give us the information we desperately seek, sometimes don’t.
Mesothelioma is a strange cancer, it is the second most painful to endure, the first being bone cancer. Over the years I have surfed the net to see if anyone was having the same symptoms as I was going through, but many times I was left with no answers.
I am glad to share my story on MesotheliomaHelp because this site is unique by offering the perspectives of a caregiver (Jennifer Gelsick), a nurse (Lisa Hyde-Barrett) and a patient. I know that all the information presented is thoroughly researched, and they turn to me sometimes to get “real information.” I hope that by sharing my information here, I can help others find the reality of what happens to people with mesothelioma.
I was quite happy believing that mesothelioma was what they classed as a local cancer, that means it didn’t travel to other areas but stayed in the area it was found. In my case, it is in my left lung. Now we know that mesothelioma can travel, in some cases it has even traveled to the brain. But this isn’t what this article is about, it’s about the lack of knowing what to expect.
Many of us mesothelioma patients have had fluid at one time or another, either in our lung or abdomen, depending on which site the cancer has flourished. In those articles we read it doesn’t say that the fluid can make you feel unwell. Usually you can’t describe how you feel other than you are clammy, sweaty, maybe your temperature is up and you feel like you are getting a chill. If this happens, you should go to your doctor immediately.
If you have flown recently and feel this way it could be fluid, a pneumothorax or a DVT. Where does it tell you this? Nowhere, but now you know.
Recently, I noticed my stomach was increasing in size, when I returned from holidays not only could I not zip up my jeans, but they didn’t even come close to fitting me. My stomach had ballooned. I had mentioned the growth of my stomach to my doctor prior to my holiday, and I was told that the excessive weight I had on my stomach was probably middle age spread, even though I am relatively slender.
One morning, a couple days after I returned home, I felt as I described above, clammy, etc., and I went to my doctor who sent me for an X-ray. The doctor there had me admitted to another hospital. At first they were only interested in my lung, my good lung now had fluid. I just happened to mention my stomach. On examination they found it was full of fluid, it had probably been accumulating for months and whether the flight had exasperated this or not I will never know. Although it felt like a struggle to get results, finally I had nearly 4 litres of fluid drained from my abdomen, and it is just now slowly returning to a more normal size.
Trying to research whether this was normal for someone with pleural mesothelioma was a dead end. Once again, now you know because of my experiences. I don’t know if it is normal, perhaps nothing that happens with mesothelioma is normal, but it can and does happen.
People writing about their own experiences can help those who aren’t sure if what they are going through is part of the disease. Does this happen? Should I feel this way? These questions are only answered on discussions or by those willing to share what they have gone through.
With mesothelioma it is hard to say this could or couldn’t happen. My illness has given me totally different symptoms to many that I know, while theirs has acted differently to mine. Do most people want to know what they may have to face while dealing with this deadly killer?
By going to the personal blogs out there like Lou’s, Mavis, Tess, and Linda’s [other mesothelioma warriors who blog about their experiences] to name but a few, we know people are looking for more information. Information on how to survive and whether what they feel is what becomes normal. On my own blog, many search keywords come up like How Do you die from mesothelioma? Can you feel it growing?
I think it is important for mesothelioma patients and their families to know the medical facts of the disease, but it is almost more important to understand the reality of the disease. Perhaps by sharing the “raw” details of what I have gone through for so many years I can allay some of the fears of others, and give them a place to go for what they are up against.
Mother / Daughter Bond Gets Stronger When Mesothelioma Threatens
I have always been incredibly close to my parents. Being an only child, they were my first playmates, first friends, and always my biggest cheerleaders. After Dad was diagnosed with mesothelioma, these relationships were tested by nerves and stress, but ultimately strengthened by faith and love.
My Mom has always been the strongest woman I’ve ever known and that has rang true throughout this journey. I remember looking at her in the little room in the hospital when we were told that Dad had cancer. Through the tears and confusion, I still saw strength. When I asked her what we were going to do, she responded in a way that gave me faith and reassurance. When I would break down, she would pick me up. When I was scared, she reminded me that we needed to trust that God would take care of everything.
Going through a traumatic situation will undoubtedly bring people closer together, and this definitely happened between my Mom and me. As close as we were before, we are even tighter-knit now. Being in this together has been a comfort to both of us. We have realized that it is important to cherish every moment that you have with your loved ones, as life can change in a heartbeat, like it did for us.
To me, every relationship in my life is a treasure and blessing. The greatest joys in life involve the people you love. And when you are given a mother as amazing and special as mine, it’s easy to enjoy making those memories that you know you will never forget.
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