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Nurse Inspired by Mesothelioma Survivor Who Comforts Other Patients
Survivors of mesothelioma and their stories are inspirational. From their stories we gather strength and renewed purpose. At a recent conference, a mesothelioma survivor talked about her journey, her leap of faith, and her life today, as well as the everyday challenges she now faces living with mesothelioma. She looked and sounded fabulous.
I watched her speak with and comfort a family member of another mesothelioma patient. Their story was not as positive, but she was powerful with the words that she shared. She left a lasting impression on those that attended the conference. Her road has been filled with challenges, serious issues, and adjustments that she and her family had to make, but she delivered her message with grace, dignity, and gratefulness.
As she spoke, one thing that struck me was her inhalation of breath, it was part of her life now with one lung. She spoke with truth about her life before mesothelioma, the diagnosis, the fear and her journey. She blindly put her faith in a surgeon almost ten years ago, when the medical world knew so much less about mesothelioma. She said she had no choice, but her treatment center gave her hope. I am sure it must be difficult to know whether the option you pick is the right choice. Clearly, this woman made the right choice for her.
As part of her legacy, as a young, long term survivor of mesothelioma, she always has her hand extended to help others. When she speaks with someone, she never really speaks about her situation. Instead she listens intently, and she puts her feelings and her journey aside while she puts herself in their shoes.
As a professional nurse, I find it amazing to see these patients think about somebody else when their lives have been turned upside down. She spoke about how community is so important and how that helped her and her family recover.
We all consider her cancer free, but she is still in the nucleus of the mesothelioma community continually giving back. Possibly, that is part of the recipe of a long term survivor.
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Another Scary Bump in the Road During Battle with Mesothelioma
Amanda’s father passed away on March 16, at home surrounded by his family. Amanda had written several articles about her father’s ongoing treatments and his determination that had not been published before his passing. She believes it is important for families dealing with mesothelioma to learn about her father’s ups and downs during his last six months. Here she discusses an issue with his Coumadin levels that sent him to the hospital. The next two weeks she’ll cover other challenges and lessons learned while fighting the cancer.
While Dad was still feeling up to doing household chores, he was loading up the fireplace with my brother Andrew. He bent over to pick up a log and collapsed. Andrew rushed to get his oxygen because Dad was gasping for air and was unconscious. It was very hard for him to regain his breath again, and he did just not feel right, so my mom took him to the hospital.
The doctors kept Dad in the emergency room for a few hours before deciding to admit him. They found that his Coumadin level was too high, and his blood was too thick. He had a few clots in his lungs and this was making his breathing very difficult. He ended up being in the hospital for four days recovering and getting his Coumadin level to where it should be. When a cancer patient is on Coumadin their INR levels have to be monitored regularly. Dad’s tests were too far apart and he should have been monitoring it much more closely with his local doctor.
Because of this visit, Dad ended up switching to the injectable Lovenox shots. These do not have to be monitored, and it does not interact with the patient’s diet like Coumadin. This is one less thing that needs to be monitored and one less trip to the doctor to have his INR level checked.
There are no “how to” guides on how to monitor and keep track of all symptoms that a mesothelioma patient could encounter. My advice would be to keep a daily log of symptoms and a list of conditions. The more you are educated about your condition and the more information you know about others living with Mesothelioma, the more aware you are going to be about your own symptoms. Also, with the amount of emergency room and doctors visits, it is a good idea to keep a log of names of the medications and dosage of each. This makes it easy when dealing with different doctors and keeping everyone on the same page.
Mesothelioma Nurse Encourages Others to Reach Out After a Tragedy
Isolation is a problem in the society we live in – we are all busy and we lose touch with each other. Being buried in our day to day lives is overwhelming, and at times, too much. Loss and grief can overtake us.
Last month a tragedy occurred at Brigham and Women’s Hospital when a man killed a young, brilliant, father and surgeon. How can something like this happen?
By all reports the shooter’s family was just as shocked as everyone else – something that was totally out of character for him. Grief seemed to have played a part in this senseless tragedy. Dr Michael Davidson had operated on the shooter’s mother in the late fall. She was being transferred to a rehab facility when she became ill and was admitted to another hospital where she then died.
What drove the man to blame the doctor who had tried to help his mother to kill him and then himself? We will never know what happened in his mind to lead to the events of that cold January morning, but the effects of this act have shattered a young family and left a toll on all that knew the 44-year-old doctor.
When diagnosed with mesothelioma, you and your family have to confront what none of us want to- the fact that we are all mortal. The people who have dedicated their professional lives to finding a cure, advancing treatment and studying are here to help. Although treatment does not always go the way we want, it is not someone’s fault when it fails.
Look around at your family and friends. Reach out to someone who you think might be having a hard time. Sometimes people just need someone to listen to them.
A young family is now without their beloved husband, father. His children will grow up without him. A senseless and tragic loss.
Could Your Fatigue Be An Early Warning Sign of Mesothelioma?
One of the first things that Mrs. T noticed was that she was tired. She was not used to being tired, she had a busy life, family, work. At first she thought she was just over doing it- burning the candle at both ends- working too hard. After all, she was getting older. Mrs. T is a 65 year old wife and mother of three grown children. She had always had a lot of energy so when she started to feel tired she didn’t pay much attention to it.
Being tired can be a sign of a hectic a lifestyle, or it can be a sign of a serious health problem. One of the common signs of mesothelioma is fatigue. It is difficult when you are feeling “just tired” to pay a lot of attention to it. Experts suggest that if you are tired all the time that you make some lifestyle changes and then monitor how you feel. Eat more wholesome foods, drink more fluids, get more sleep, cut back on caffeine and alcohol, and give it two to three weeks. After this time, if you are still feeling inexplicably tired, consult your doctor. Sometimes subtle things like being tired are warning signs.
Mrs. T also started having shortness of breath and didn’t feel right. She went to her primary care physician, and after testing to rule out common causes, she was diagnosed with early stage mesothelioma. In retrospect, Mrs. T remembers just “feeling tired all the time.” Luckily for Mrs. T, she did not ignore how she felt and went to her doctor who ran the appropriate tests.
Diagnosing mesothelioma can be a clinical challenge as the symptoms can be vague and often follows the diagnosis of pneumonia or a recurrent issue. The most common symptoms of mesothelioma can be chest pain, painful cough, shortness of breath, fatigue, and weight loss. All of these symptoms are much more common in other conditions. Diagnosis can be a challenge.
If you have been feeling tired for an extended period of time don’t ignore it. Pay attention and visit a medical professional – it could help to save your life.
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Fun Times at the Shore Helped Me and Dad Forget About Mesothelioma
For the most part, summer is the happiest time of year for my family. I sometimes wonder why we stayed in the Northeast, when my whole family loves warm, sunny weather. As you might remember, I am a teacher and I have a wonderful opportunity to move down to the Jersey shore in the summertime. My family grew up going to Cape May and Wildwood each year for family vacation, sometimes several times in one summer. So, by renting a shore house I make it very convenient for my family to come visit me.
This past summer while Dad was resting and allowing his body to become stronger, he took a trip to visit me at the shore. Since my mom and brothers have a hard time getting off work, he made the trip solo. I think that this may have been the only time ever that just my dad and I were able to spend a few days together doing things we enjoy. Father/daughter bonding week it was!
I had planned a few nice dinners at great restaurants that we went to when I was a little girl on our summer vacations, and we were able to reminisce about “the good ole days.” One place that we both love is The Lobster House in Cape May, NJ. I would guess that almost every summer on vacation we ate at this place. Amazing fresh seafood and the best clam chowder! While eating dinner, I could see that my father did not have the appetite that he used to have and we had a lot of leftovers for the next day’s lunch.
The following day I took him to the pool to relax on lounge chairs and do some reading. We relaxed all day and at one point we took a walk down to the ocean, which was next to the pool. It was slow going since walking on the sand was a workout for Dad. We had to stop multiple times for him to catch his breath, but he made it down to take a dip in the ocean. He even dove into a wave, which he has always enjoyed very much. We also were able to take some funny pictures of him showing off his “strength.”
We will both cherish this father/daughter vacation week forever. It was so nice to get him away from his normalcy at home to the beach and to enjoy the things he used to do on summer vacations. I even made comments about how it was easier for him to breathe in the air down the shore. I’m not sure why that would be, but maybe it was just because he was happy and away from all the normal daily stresses he has. Time to get away and forget about how much his life had changed in the last few years was well needed.
I recommend taking short trips, if at all possible, when your loved one is feeling up to it. It is always nice to escape for a short time and to forget about mesothelioma and how you and your loved one’s lives have changed because of cancer. Vacations or short get-away weekends give everyone a short relief to enjoy life and to see the beauties of the world.
After fun at the beach, Dad headed back to Penn Medicine to start his immunotherapy treatments. Find out more about his clinical trial next week.
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