Month: May 2014
Family Cautiously Optimistic at Shrinking Mesothelioma Tumor
I’ve said this before and anyone who has been through cancer treatments knows that when a scan is coming up it is the most nerve racking time that you can experience. The nine weeks of Dad’s chemo were coming to an end and it was that time again. The facts were that we didn’t know how this round of chemotherapy would work, but the doctors were confident. Dad’s doctors could make no guarantee if it would even work to shrink the tumors that had grown back in his chest and liver. All we could do was pray and be hopeful.
In the week leading up to the scan, Dad suddenly started having an awful pain on the right side of his chest where there had been small pea-sized tumors that just wouldn’t go away from the chemotherapy and radiation treatments. This made him very uneasy about what the scans would show. The spot then became swollen and red within the next few days. Dad was feeling very discouraged by this and was dreading the upcoming scan. He told me that he had the same feeling about the results as the night before he went into his 15 hour surgery: the feeling of the possibility that he would lose this battle. Hearing your father speak like that is hard to take, but all you can do is encourage him that everything will be okay and keep positive.
Monday came around and he had an appointment close to home to get the scan done. They asked him if he wanted to see the results that day and he told them he did not want to know. He wanted to wait until Friday to discuss what the scan showed with his doctors in Philadelphia, so they could talk about a plan of action. I understood his reasoning, but it was burning a hole through me all week. I cannot imagine what it was like for him to have that lingering feeling of what the scan showed, but I know how I felt and I was on edge. I could tell that everyone in our family was too each time I talked with Mom and my brothers. We all wanted to know so badly, but knew that it was best to wait to talk about what to do next.
Friday came along and I was at work. I carried my phone around in my pocket all day waiting to get the call from Dad. I didn’t even know if I wanted to find out during work, or if I just wanted to wait to look at my phone until the end of the day. Around lunch time I saw a text from my dad, “Just left doctor’s office. CT scan shows that the cancer is shrinking, but still need 3 more series of chemo at least.” I took a deep breath and the feeling of relief overcame me.
After work I called to see how the rest of the day went and how his treatment went that day. I asked about what the doctor said about the pain in his chest and it turned out to be effects of the radiation showing up. Dad seemed to feel relieved, but still felt a bit discouraged in the fact that he said he has accepted that he will probably be on some sort of treatment for the rest of his life. He knows how sick he was on this last nine week cycle of chemotherapy and he was going to have to go through it again.
Once again, all I can do is keep encouraging him to keep fighting and that everything will work itself out and it will be okay.
Continue reading next week about the side effects and changes in my dad while he is on chemotherapy.
Happy Birthday Dad
April 25 would have been my Dad’s 58th birthday. Instead of cake and presents, there were flowers, tears, and a visit to his grave site. Where there should have been the sounds of laughter and singing, there were tears and sadness. We spent the day looking back at the past instead of looking toward what the following year would hold. Everything is different now.
Looking back and thinking of how we usually spent Dad’s birthday, I can’t help but smile. It was always simple, but special. We would have presents and cake and usually go out to dinner… one of those dinners that would last for hours full of stories and memories being made. Dad and Mom’s birthdays are two weeks apart, so we usually celebrated both of them together.
When Dad turned 50, we had a surprise party for him. There were 100 or so guests, family and friends, who came out to fete him. His band played; there was great food, funny gifts, and just a wonderful night to honor such an amazing person. I know that Dad felt so loved that night; his smile said it all.
When we started planning the party, we knew we wanted his band to be there, but didn’t quite know how to arrange that without him figuring it out. That’s when it was decided that I would tell him that my aunt and I were planning a surprise party for Mom. I told him that his only job was to get the band to play. I could tell that he wanted to do more and that it kind of hurt his feelings a little. I felt horrible!!!! All I could do was tell myself that I had to let it go until the party. I remember apologizing to him that night and he just laughed, like he always did!
That night, we had no idea that he wouldn’t have very many birthdays left. Life was easy and fun, so lighthearted, just like Dad. He wasn’t a worrier; he just took things as they came. Thinking of things this way, it makes me realize even more to treasure your time and make the most of every second.
Even though I miss Dad constantly, it’s the special occasions that are the hardest. It brings so much pain into my heart thinking back on the past and realizing that Dad’s not here to share in our present or future in the way he used to. The most important thing, I suppose, is to always remember that he’s in my heart and the hearts of all those who loved him. He has given us a birthday gift in this way.
I hope you had the best birthday in Heaven, Dad. I’m sure the cake and ice cream were the best ever.
Nurse Talks About Dealing With Grief After Losing a Loved One
A friend’s mother died recently after a short illness. Diagnosed in December with a very aggressive form of amyotrophic lateral sclerosis- Lou Gehrig’s disease – she died in mid- March. This vibrant, young woman was struck down by a debilitating disease. The end was painful for the family as they watched the disease progress rapidly until she enrolled herself in hospice.
Her mother chose hospice and her family listened. Her husband of 48 years was devastated. He told everyone who came to the wake the story in the exact same way. His wife’s devastating diagnosis, the swiftness of her decline, the suffering, and the heartbreaking loss that he and his family were dealing with. My friend was reflecting on that and the way her father was handling his grief, and we talked about the importance of letting him tell his story and listening to it.
Expert Insight
Dana Farber Cancer Institute
“Grief is made up of intense emotional and physical reaction that is characterized by deep sadness and a yearning to be with that person again, how we react will be different for each of us because grief is unique.”
Grief varies from person to person, how we deal with it and on what timeline is unique. How can we as caregivers and family members help when someone dies? Most importantly, remember that everyone grieves in their own style. The five stages that Dr. Elisabeth Kubler-Ross introduced in 1969 – denial, anger, bargaining, depression, acceptance – are a guideline and everyone is different. People that are dealing with a loss must be able to do what they are comfortable with, whether it be repeatedly telling their story, attending support groups or seeking out grief counselors, and on their own timeline.
Grief is something we all deal with during life. For my friend and family it is supporting her father by allowing him to tell his story in his own way to deal with his grief. It does not go away if it is ignored.
Mesothelioma victims and their families need support through their unique journey with mesothelioma. Don’t be afraid to listen. Everybody has a story and often just listening to it more than once can be helpful.
Mesothelioma Advocates are Critical for Helping to Find a Cure
I have said numerous times that I had no idea what mesothelioma was until after my Dad was diagnosed. And, really, if you have no reason to know, why would you? Mesothelioma is always shown in commercials, with people offering some sort of legal advice. The word might be out there, but in no way does that explain what it is, how there is no cure, and what causes it.
Mesothelioma might be considered one of the lesser known diseases of our time. Even so, those impacted by its grasp find that they can never get away from it. With the cure not being found as of yet, loved ones of those who have or have had meso find themselves in constant fear of asbestos, myself included. We try to educate others of the dangers of this material and provide as much information as possible, but it still feels like people aren’t really listening.
Funding for mesothelioma research and education is critical. We must not only educate the general public about this form of cancer, but also work constantly to raise money that goes toward research so that we can, someday very soon, find a cure.
With people not being overly familiar with mesothelioma, it is sometimes tough to fundraise. People might not want to contribute to a cause that they know nothing about. When you are working on a fundraiser, be sure to offer literature that your patrons can look at. If your event is in honor or in memory of someone, talk about them and their life and how it was changed by this disease.
Having lived through my Dad’s journey with mesothelioma makes me want to work even harder to raise funds for organizations that work towards eradicating this disease. Dad underwent a heartbreaking diagnosis, surgery, chemotherapy, a clinical trial, and radiation before he passed away on October 15, 2013. The time between his diagnosis and passing was almost 21 months. That period was the most challenging of his life and the lives of our family.
Even though my Dad is now in Heaven, I will continue to work to raise awareness and funds for mesothelioma research, and I hope that you will join me. My prayer is that together, we can save lives through education and treatments, and finding new leaders who are committed to ultimately find a cure for mesothelioma.
Know more about Mesothelioma and how you can deal with it.
My Memories of Dad Will Last a Lifetime
I have had a number of people tell me, “Don’t worry, you’ll never forget your Dad.” People have also said, “It’s hard, but try not to forget.” Right after Dad passed, forgetting any little thing was my biggest concern. Now, I realize I don’t have to worry about it, that Dad is always with me in some way.
Once I got over the initial shock of Dad’s passing, I realized that there is no way I will ever forget my Dad. We may not clearly remember loved ones we lost when we were young, but I was 30 when I lost Dad – plenty old enough to have stored up memories to last me a lifetime.
A lot of people go through this fear, and I honestly think that it’s perfectly natural. You want to hang on to every moment that you spent with the person you lost, not forgetting a single detail. You want the young, maybe even unborn, members of your family to know them like you did. The good news is that they can… through you!
To me, carrying on someone’s memory is a special gift that you can share with others. They don’t just have to be children, even an adult who didn’t know your loved one could benefit from hearing stories, seeing pictures, or watching home movies of someone who was special to you.
I think of my Dad every single day, and I know that’s something that will never go away. I talk to him a lot, telling him about what’s going on in my life, joys and sorrows, triumphs and failures, just like I would have if he were still here. I know that he’s up in Heaven interceding for me. It’s hard to look at it this way at first, but realizing that you now have a special angel up there is a pretty awesome thing!
Carrying someone with you and passing on their memories can be a lot of work, but it’s something so worth it. Talking about your loved one will come to bring you joy and comfort after a while and can bring you a feeling of being close to them. Your relationship with your loved one is unique and special, carry it with you always!
Know more about Mesothelioma and how you can deal with it.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
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