Author: Joseph Belluck
Mesothelioma Patients Housing Option During Treatments by Hope Lodge
When it was decided that it was time for Dad to have some further treatment, we put everything in God’s hands. The recommendation was 25 radiation treatments, over a course of 5 weeks, that would take place in New York City with Dr. Kenneth Rosenzweig of Mount Sinai Medical Center. Being away for such a long period of time is quite an undertaking, and we expected the monetary costs to be enormous. That was until we heard about Hope Lodge.
Hope Lodge is an amazing, beautiful facility funded by the American Cancer Society. They are located throughout the country and provide a free place to stay for people undergoing cancer treatment. There are strict criteria that must be met in order to be eligible, but we are blessed that Dad was accepted.
I must admit, my family was initially quite apprehensive about the Hope Lodge. When you hear that there is a free place to stay in NYC, you can’t be sure what to expect. Walking through the doors, we were pleasantly and completely surprised. We were greeted by wonderful volunteers and staff members who gave us a tour of the Lodge.
The sixth floor is the family floor equipped with a full kitchen, fireplace, entertainment center, and plenty of seating to visit with family and friends. There is a room for children, games for everyone’s use, a computer lab, meditation room, and library. It is a wonderful, calming atmosphere. This space is also used for events held by Hope Lodge. In the time my parents have been there, among other things, there has been a 100th birthday party for the American Cancer Society, dinners, games, and music, free to all guests and their families.
On this floor, there is also a balcony with plenty of space to sit outside and eat or relax. Looking to your left you see Madison Square Garden, with the Empire State Building to the right. There is a staff member on the sixth floor 24-hours-a-day to help you with any needs you may have. They are so kind and knowledgeable about the Lodge and area, and they are a great resource and friend to the guests.
We helped my family move into their beautiful, spacious room with a great view! They have their own bathroom and there is laundry and a full kitchen on every floor. These floors are only for the patient and their caregiver, allowing for a quiet, restful environment while you are receiving treatments.
My family has benefitted greatly from the services offered by the Hope Lodge. It is truly a Godsend and has made a tremendous difference in many lives. The Hope Lodge allows patients to receive lifesaving treatment they may not have been able to receive otherwise. God bless all those involved in the Hope Lodge program, and thank you on behalf of all families and patients you’ve encountered!
Managing “Adrenaline Rushes” with Medication
Those suffering from mesothelioma may encounter a strange phenomenon once in a while which I can only call an “adrenaline rush.” It has happened to me quite regularly over the years and recently when I posted about it on Facebook I was quite surprised that a few others have experienced it too.
I have no idea how it starts or why it happens, but I do know one thing: it can be a frightening experience. Even now that I am used to them, I still find myself scared.
I’m not sure whether they run in a pattern of time, but I do know that for me my normal temperature is 36.5C (97.7F), but when I go through one of these episodes my temperature can drop as low as 34.7C (94.5F). During my last four attacks, however, my temperature has only dropped to 35.6C (96.08F).
Sometimes they happen when I have gotten up in the middle of the night and there is a big change in temperature from being under covers in the bedroom to entering the cold tiled floor of the bathroom, or when I have been hot and come into a cool room. Whether this is the trigger I do not know. It starts by me feeling unsettled, then I feel that I can’t get air and my heart seems to start racing. I know the best thing is to try and sleep through this, but I can’t lie down because my body starts telling me that I can’t breathe. I have paced before, but I found this seems to make the heart race more. I can’t sit still, my mind is everywhere and I become clammy.
I am not an advocate of taking pills for the sake of them, but when these adrenalin rushes start I have found that taking a diazepam (marketed as Valium) tablet is the only way I can get through them.
I fluctuate between being too hot and too cold. Then I fluctuate between wanting to lie down and wanting to stand up. In the doctor’s waiting room I was hot and cold, on and off the chair, feeling tearful one moment and angry the next. He was running late and honestly I wanted to lie down and die.
The doctor took my temperature, asked me a few questions but I can’t really remember any of them, all I wanted to do was be knocked out to stop my mind from working overtime. He prescribed diazepam, not a tablet he likes to give but one that he knew would settle me. For me the medicine takes about twenty minutes to work, and during that time I try to relax. I typically then fall asleep, and wake up a few hours later after the attack has passed feeling much better.
I understand my body quite well and sometimes I believe these rushes are the start of a growth of a new tumour, maybe it’s my way of the body trying to tell me that all is not well.
It would be interesting to know if any other Mesothelioma patients go through this or something similar, and if you do, how you manage the effects. Feel free to comment below of your experiences.
Additional information about Adrenaline Rushes:
According to Livestrong.com, an adrenaline rush is a sudden increase in the secretion of adrenaline from the adrenal glands. When a person is under stress, these hormones are released to initiate the “fight or flight” response which often includes increased heart rate and an increase in the blood flow to essential organs. The cause of an adrenaline rush may be an imagined threat as opposed to an actual physical threat. An adrenaline rush can also be initiated by strenuous exercise, heart failure, chronic stress, anxiety or a disorder of the brain or adrenal glands, according to Livestrong.
https://www.livestrong.com/article/203790-what-happens-during-an-adrenaline-rush/
Symptoms of an adrenaline rush are similar to those of a panic attack. The American Cancer Society discusses panic attacks on its website under information about anxiety and fear that many people with cancer often face.
http://www.cancer.org/cancer/malignantmesothelioma/detailedguide/malignant-mesothelioma-treating-c-a-m
Useful Mesothelioma Terms for Families Facing Mesothelioma
When dealing with a mesothelioma diagnosis, you learn a new way of life. Everything changes, including your vocabulary. Three terms that I didn’t know anything about before mesothelioma came into my life are pleural effusion, thoracentesis, and pleurectomy.
The term “pleural effusion” came into play before Dad’s diagnosis. Pleural effusion is essentially fluid in the lung. This was Dad’s main, tangible symptom. It was part of the cause of his fatigue and shortness of breath. He was admitted into the hospital with this diagnosis on Thanksgiving Eve, 2011.
On Thanksgiving Day of 2011, we learned another new word, thoracentesis. Essentially, this is where your lung is “tapped” and fluid is drained from it. Although Dad got a little relief after this was done, the fluid kept returning and was drained again in January, during a VATS procedure (an exploratory surgery that led to his diagnosis), and February 2012 during his pleurectomy.
“Pleurectomy” is a word that was so foreign and scary, but that has become close to our hearts, as it saved Dad’s lung and his life. Dr. Harvey Pass performed this surgery on my father on February 15, 2012, at NYU Langone in New York City. To define a pleurectomy in very simple terms, it entails removing the lining of the lung, where mesothelioma usually attaches itself.
So many other terms that you hear in passing become part of your everyday life: chemotherapy, radiation, oncology and ports, just to name a few. When I say that every aspect of life changes, I mean that literally! It does become a lot to take in and can be tough to manage at some points.
Just remember, there are people there to help you 100% of the time. Pray, keep your faith strong, and take it one day (or word!) at a time.
Know more about Mesothelioma and how you can deal with it.
Offering Words of Comfort to a Friend or Family Member
Sometimes, when a family member or friend is ill, you don’t know what to say. You worry about saying the wrong thing, asking too many questions, or appearing to be less than genuine, so instead you say nothing. It’s important to think before you speak to someone about their diagnosis of malignant mesothelioma, but also to be there for your loved one and show concern and support.
Even though you may not understand mesothelioma, keep in mind that the person you’re trying to comfort may not know a lot about it either. Questions about the disease itself may not be the best thing to discuss right off the bat. Trust me, it is a lot to take in! Also, realize that malignant mesothelioma is a serious thing; be careful not to shrug it off.
It might be best not to discuss where the person thinks they were exposed to asbestos, as that is neither here nor there at this point. Talking about others who might have had mesothelioma is a good topic to shy away from as well. Medicine and mesothelioma treatments are much more advanced now than they were even 5 or 10 years ago, and the survival rate is much better.
Whatever you say, be sure that it comes from the heart. If you are going to ask how someone is doing, listen. Don’t change the subject or try to lessen what they are going through. Rejoice with them in their triumphs and share in their struggles. Offer to help with specific things, but again, be sincere and follow through. Make plans once or twice a month to do something together, and be sure to do it. Platitudes mean nothing if they are not concrete.
Some things that my Dad was told that helped him so much were, “keep the faith!”, “God doesn’t only go half way”, and other uplifting messages of hope and trust in God. Also, never underestimate the importance of silence and saying a prayer together. My family spent and still spends a great deal of time praying. God will hear them and answer them.
Your loved one might have things they want to talk about, some of which may have nothing to do with meso. Let them guide the conversation and allow them to get some things off their chest if need be. They might not feel like talking about things that day, so let them take control and talk about their interests.
Don’t be afraid or discouraged to talk with someone about their illness, mesothelioma or otherwise. The key is to be sensitive to what they are going through and to be earnest and heartfelt in your conversations. They and their family will appreciate your presence and prayers!
Mesothelioma Survivor and Family on the Lookout for a Breakthrough
Lately, it seems like there has been a buzz regarding possible new treatments for mesothelioma. This brings me even more faith that a cure is just on the horizon! Keeping up with the newest treatments, however, is confusing and difficult at times. Understanding the medical terminology and even the basics can be daunting and scary, but it is a gateway to hope and a cure.
Researchers have spent a great deal of time working towards the goal of curing mesothelioma permanently, and I believe that a breakthrough is on the horizon. Some of the treatments and procedures that my Dad was blessed enough to go through were fairly new or still in the clinical trial stage. Many of these recent developments have helped so many mesothelioma patients.
For a newly diagnosed patient, these treatments could literally be their lifeline. In the future, mesothelioma may not be as scary as it is today! Of course, no one wants to hear this diagnosis, but there will hopefully be a time soon when it can be said, “We can get rid of this permanently, no problem!”
We would not be where we are in the fight against mesothelioma if new, revolutionary procedures and techniques had not been conceived and brought to fruition. These treatments are not necessarily only for the newly diagnosed, they are also for survivors. These could be things to help prevent a recurrence, and to treat a recurrence if it were to occur. There may be something out there that could guarantee there would never be a recurrence, or add to the survivors quality of life. We have to be diligent to make these dreams a reality.
My Dad has been a part of new treatments, and they have been a Godsend. With prayer, trust in God, and faith, a cure will come! Countless people are awaiting the day when the announcement comes that a cure has been found. My family and I are among them, waiting to celebrate!
Free Mesothelioma Patient & Treatment Guide
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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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