Category: Faces of Mesothelioma

Words of Faith and Hope for Mesothelioma Families by Jennifer Gelsick

• Joseph Belluck
• Faces of Mesothelioma

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

• Joseph Belluck
• Faces of Mesothelioma

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

• Joseph Belluck
• Faces of Mesothelioma, Uncategorized

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.

Move Beyond the Guilt When Caring for a Mesothelioma Patient

• Joseph Belluck
• Faces of Mesothelioma, Uncategorized

In the days and weeks following Dad’s diagnosis, I found myself looking around at other people who weren’t dealing with mesothelioma and feeling jealous. I remember thinking that they were able to live their lives uninterrupted, unchanged, when my whole world had just been turned upside down. Then, I began to question things; how will I ever be able to smile again, how will I do my job again, how will I ever be able to do anything “normal” again?

The answer took me a long time to realize, but it was quite simple. You just do. At that point in my life, I would have loved to trade places with anyone else who hadn’t just found out that their father had cancer. I wanted to run from it and pretend that it never happened. But those things weren’t possible. It was time to “be a big girl” and face my new reality head-on.

There was so much to do and figure out, especially once we decided to go to New York City. Planning and being in a strange place seemed to distract me enough to focus my attention on what was important. Prayer brought me comfort and solace. My family and friends brought me strength. God brought all these things to me.

Once the surgery was over and we were back home, I wasn’t sure how to move on from all the trauma that my family had experienced. Adjusting to a new lifestyle was difficult. It’s easy to let yourself fall into a pattern of guilt. Why do I get to continue with things “business as usual” when Dad has been faced with this disease? How do I continue to live three hours from my parents while they are in such a tough spot?

Again, these answers took me a long time, and it was a more complex response. First, Dad wanted all of us to get back to our normal lives and not dwell on the mesothelioma, just as he wanted to move on from it. Secondly, you cannot let your life be completely consumed by a diagnosis.

Do I worry about Mom and Dad every day? Absolutely. Do I help with anything they need as much as possible? For sure. Do I feel guilty for living my life? Sometimes, but by and large, no. I was an emotional wreck for quite a while, and I really think that me getting back to my normal life was a huge relief for Dad. Mom and Dad know that I would drop everything for them at any moment and help them with whatever they need. That is what’s important. The love I have for my family, and they for me, is amazing.

I have said previously that before you can take care of someone else, you have to take care of yourself. That remains true in this situation. Be happy, be there for your loved one, and be present in every moment. Don’t feel guilty for living the life that God gave you – that’s what He intended it for!

Mesothelioma Patient Manages Memory Loss and Forgetfullness

• Joseph Belluck
• Faces of Mesothelioma

Many years ago, I read somewhere that having anaesthesia caused the death of brain cells, especially those associated with memory.

Unfortunately, over the years since I turned 30-years-old, I have undergone quite a few surgeries. Five to treat endometriosis, including a hysterectomy, and then my gall bladder was removed.  For mesothelioma it was three surgeries, one which had me out for some eight to nine hours.

Now, the latest findings report that chemotherapy can also cause memory loss and forgetfulness. Some people call that “chemo brain.” I have had 13 doses of chemotherapy, not as many as some, but more than others. On top of that, I take morphine and pregablin, both of which can adversely affect your memory.

I used to pride myself on being able to remember dates, events and information that was important to my job and things important to my friends. I would multitask at work without thinking. Today, things have really changed.  No longer do I bounce between three different programs, do what I need to and take a telephone call at the same time. I have to focus my full attention on just one thing at a time. If I do talk to someone on the telephone when I am in the middle of doing a task, I forget completely what the task was. And once I go back to what I was doing I forget what I was asked to do on the telephone!

Emailing: how can you possibly forget things when you email? But when you have email accounts for work and various personal accounts, you forget which one you have used or whether your emails are in Outlook, Gmail or Windows live! You spend more time searching for things than you do reading them.

This happened the other day. I received an email requesting information on mesothelioma. I opened it on my iPad and thought I would answer it on my computer.  Because I had opened it on the iPad it didn’t show up as unread mail on my computer, and I never answered it. Two months later I am clearing my emails into folders and I found it. I had to apologise profusely for not answering sooner.

My husband thinks my memory loss is quite good because he can get away with things. If he has forgotten something on the grocery list, for example, he says I never told him. Of course I can’t say I did because I am never sure whether I told him to add things or not.

These are just simple trivial things, but seriously this memory loss can be bad.  It isn’t just long term memory that comes and goes but short-term as well. I was asked to ring a friend as I was leaving the room, I passed the telephone but the thought had completely gone.  An hour or two later my friend rang and said, “I thought you were ringing right back, what happened?” If this had been an emergency, it could have had serious consequences.

The other strange thing is your memory does start coming back. Unfortunately for me, just as I start to improve, I have found that I am back on chemotherapy and the memory problem resurfaces.

I guess what I am trying to say is to you that this is your “new normal” if you have undergone surgery and/or chemotherapy.  Maybe you will be lucky and it does not have an effect on you, but if it does, all I can tell you is to try and remember to make notes, and then keep your note pad in the same place!