Author: Lisa Hyde-Barrett
The Uncertainties of a Mesothelioma Diagnosis
Receiving a mesothelioma diagnosis, for some patients, is like having a bomb explode in their life. It is unexpected, unwanted, and destroys the way their life had been going. It also wipes out any future plans they may have had.
Recently, this point was made by clear to me by a couple, when the husband was diagnosed with mesothelioma. He explained that his new world, the mesothelioma world, is like being on another planet. His sense of community is different, the language is different, terms he had never heard before are now too much a part of his vocabulary. And his friends and family cannot really help them.
As I listened to the couple talk about their experience with mesothelioma, they spoke about what their journey had been, and where they thought it might go. They were unsure of what was really in store for them. They are an open-minded couple, but the fear of the unknown makes everything hard to plan for. Not knowing what to expect, or how the man would react to treatment was overwhelming.
He was considering participating in a clinical trial, but their list of questions was growing. What does that clinical trial involve? Will insurance pay for it? How much travel would be required? What are the unforeseen expenses? And most importantly, what will it do to him physically?
Some of these questions can be easily answered. The questions regarding the specifics of the clinical trial, like expenses and travel, can be easily answered by the team conducting the trial. But how his journey would go, how he would react to treatment are questions no one can answer for them.
Emotionally it’s hard to keep up a positive attitude and mental fight when there are so many uncertainties. As the two sit and wait, we concentrate on those things that are in their control. For example, nutrition.
They can work hard to increase their focus on eating good, solid food to maintain the man’s weight. Another area that they could work on is exercise. Walking and moving around is a great tool for keeping up energy levels during treatments. Sleep hygiene was another area that he can focus on. They can also look into some mind-body exercises such as meditation, and alternative medicine like acupuncture or Reiki. When things seem out of control it can be encouraging to spend time exploring those options that can be controlled, if just a little.
Every journey begins with one step. It is hard to be on the mesothelioma journey, but it is important to work through the experience, and to reach out to friends and family and your medical team to find the support to help manage the experience.
If you have any questions regarding any aspect of your mesothelioma treatment, feel free to email me at [email protected].
Mesothelioma Nurse Hopes for Good Things from “Moonshot” Inititative
Recently, during President Barack Obama’s State of the Union address he announced the “Moonshot” program, led by Vice- President Joe Biden, to help “cure” cancer. There have been other wars on cancer, but research had yet not evolved to where it is today. President Obama pledged $1 billion to fund the program over two years. We applaud this initiative and hope that the spending is approved swiftly by Congress.
As mesothelioma victims and their families know, research, like clinical trials, takes time and money before the potential promising therapy can be offered to patients. The Food and Drug Administration’s approval process, together with the stages of the clinical trials’ process takes an average of 10 years to bring a new treatment to market.
This 10 year timeline reminds me of a woman from Minnesota who is celebrating 10 years on her journey of living with mesothelioma. She has shared her journey with so many others, supported many caregivers, and has been very open about her thoughts and fears. Some of the attributes that she possesses – her positive attitude, the fight to never give up, faith, unwavering family support – we have seen in other mesothelioma patients who have not survived 10 years. What makes her a survivor?
At this point no-one knows. There are theories, maybe her age, cell type, operation that she had, or timing. Does her continuous giving back to others somehow make a difference? The “moonshot” initiative leaves us with the hope that ten years from now, this same woman will be explaining to a large group of long-term mesothelioma survivors, how she has lived a full, blessed life.
We wish her many more years of good health and happiness!
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Home is Sometimes the Best Place for Mesothelioma Patients
Home is where the heart is. There is no place like home. Home sweet home. One could say these are clichés, but I would disagree. We all say them, but sometimes it is what makes the difference.
We recently took care of a patient, who, unfortunately, had more than his fair share of complications. He was discharged from the hospital, to the local hospitality house, but he really had a tough time of it with an inability to sleep, pain, and generally feeling miserable all the time. When I visited him there he kept telling me how fatigued he was, and what an effort it was to keep his eyes open.
With a lot of encouragement he agreed to be readmitted to the hospital. His wife was worried that he was not emotionally prepared to go back to the hospital, but with her support and encouragement he agreed. He received IV hydration, his pain medication was adjusted to alleviate symptoms, and after a few days he was discharged.
The team agreed that going home this time would be the best medicine for him. The first afternoon, he slept five hours in his own bed, and he continues to sleep well each night since he has been home. He has also begun to do light housekeeping, including vacuuming. Yes, he was tired but he is doing very well. The familiar surroundings are giving him a big emotional boost.
Sometimes going home is just what the mesothelioma patient and family need. It’s the emotional part and stress that can really weigh us down and keep us stuck. The key is to get out of that trap and do something about it. His wife was his support and with her constant encouragement, he was able to persevere through this part of his mesothelioma journey.
Situations like this one are what keep the mesothelioma team energized. It really is so rewarding to hear of someone doing well after his struggle. This makes everyone feel good about what we do. If we could say thank you to all the fighters of mesothelioma out there, we would. If we could say thank you to all the caregivers out there, we would. We are in it together and we could not do it without you.
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Mesothelioma Treatment Goals May Change as the Disease Progresses
We are all goal-oriented in some way, although some more so than others. When patients are diagnosed with mesothelioma, their goals of care are discussed. No one wants the mesothelioma patient, or their family, to suffer with interventions that are not effective. The goals of therapy are individual and are, ideally, made jointly with the mesothelioma team. While goals established in a business environment usually have a timeline and benchmarks attached, for mesothelioma patients, it is not that clear cut.
When first diagnosed with mesothelioma, many people are determined to fight. They make it their mission to learn all about the disease: where to go for treatment, clinical trials, what can do they, what can their family do. Unfortunately, for many diagnosed with mesothelioma, disease progression can be rapid.
A patient I cared for this week had been diagnosed over two years ago. He and his supportive family have fought mesothelioma aggressively. Together they had been a force. Their goal was always to keep going, don’t give up. The patient had enjoyed some good times with his family and made some memories, but time and disease progression had taken its toll. He had lost weight, did not feel well, was in pain, had no appetite and was continually nauseous. He had also changed, he was accepting and quiet. His family was not. They continued to use their resources and energy to encourage the patient to keep fighting aggressively.
As the patient’s disease had progressed, the options for his therapy became limited. At this point it, it was time to take all that energy and redirect the goals of his care. Just as the family and patient had been a force of nature fighting the disease, it was now time to become a force to fight the pain and the nausea, and to make him comfortable.
People with mesothelioma all have a unique story to tell. Unfortunately, there is not a cure at this point in time. Goals should be set with the mesothelioma team, and as the individual’s disease progresses, the goals should be re-established, as needed.
My patient and his family did re-direct their goals. Now, he is comfortable, home, and they have had conversations that they never had while fighting the disease. Conversations that will become memories as time goes on.
“Disclaimers” Can Help Mesothelioma Patients Make Informed Decisions
On TV these days there are plenty of advertisements for medications. It is hard not to notice the long disclaimers at the end. Do not take if a, b, c, d! Notify your doctor immediately if you develop x, y or z. Who would take any of those medicines after they hear all that? When put in perspective, it is a very small percentage of people on these medications who develop the side effects. But the companies are required by law to inform patients with the disclaimers so they can make an informed decision.
Recently, while taking care of a mesothelioma patient after surgery, we talked about the balance of information. How much do you want to know versus how much you are told. What was the right amount of information for this patient?
Full disclosure is important so that people can weigh their options. Knowing from the outset that if you choose to have surgery, it will involve pain, it will be difficult, unpleasant and exhausting. You may or may not have a breathing tube in your mouth, a tube in your nose, tubes in the sides of your chest, and even a tube in your bladder. That it will be in your best interest to do things that you do not want to do, like walking. You will be restricted in your fluid intake. These are the basic facts. Not all of them, but important ones, about your surgical experience.
Should there be a lengthy disclaimer listing all the possible things that could go wrong? Would you feel better knowing all the possibilities ahead of time?
In my experience, most people want to know what is going on with them and their loved ones. They trust that there will be open communication and that everyone will do their best. It would be impossible to list all the possible scenarios that might happen before, during and after surgery. Everyone’s experience is unique.
Anyone with a question today about just about anything turns to Google to find the answer. During your mesothelioma journey, the information you find may or may not be pertinent to you. Sometimes the information can be confusing and complicated and not in the right context for your particular situation. If this happens to you or your loved one, ask your mesothelioma team. The journey with mesothelioma is a team effort, and hopefully, with open communication you will find the right balance of information, to make informed decisions.
My patient had found her balance, she and family members could concentrate on recovery, knowing that for her and her family, she had enough pertinent medical information, in the right context, to make her decisions.
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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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