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!

Holding It Together While Living with Mesothelioma

Over the many years I have been fighting mesothelioma I often have the same question asked of me, “How do you hold it together?”

To be honest it is hard. I am trying to be strong for my family and friends, but I am afraid that any sign of weakness will let them down or show that I am not willing to fight to spend more time with them.

Others I’ve talked to who are mesothelioma survivors agree that it is hard to keep smiling when the doctors knock the positivity right out of us all, always giving the grim news on diagnosis that we have less than 12 months to live. Not only does that affect us, but it also affects our loved ones. They then feel they have to be strong for us and not show any weakness either.

I have known some people who have been diagnosed with mesothelioma seemingly ignore the fact that they are sick. This approach then makes it harder for the family because they think their loved one is hiding away and not facing up to the grim prognosis given. In truth most mesothelioma patients don’t ignore it or try to hide, they just don’t know how to deal with the diagnosis and believe this way they are being strong for everyone else.

For those of us who accept it off the cuff, we decide there and then that we won’t be beaten and put on our battle face. The only problem is that we forget to take it off and reach out. Then as our treatments wear us down, we believe we can’t let our loved ones know how bad we feel; we are ‘leading by example,’ we are ‘coping and fighting.’ Yet sometimes inside we do want someone to say to us ‘It will be fine,’ or ‘You’re just having a bad day.’ Instead we find we can’t share our worries with them for fear that any mention of the word mesothelioma will end the conversation. Our partners don’t want to think those bad days or those new pains are cancer related. Doing so means they may have to face up to their own worries, and their hold over their own emotions may fall.

Who Are We Being Strong For?

We are all being strong for ourselves, our family, our loved ones who mean more to us than life itself, but then we deny ourselves those bad days when we can’t cope. The longer we keep that battle face on, the harder it is to break down and say, “Hey, I’m not coping as well as you think.” And because we have that battle face, our families and friends do too, which means they can’t say it either.

Finding a balance where partners can be truthful and honest is difficult. So how do we break this chain reaction? I’m not sure everyone can. There are families that can face up to mesothelioma together and discuss it, they share the pain, the worry and the fight. Unfortunately, not everyone can do the same. Deciding to share your battle with mesothelioma in a way that works for you can help ease some of the emotional strain.

I started a journal at first, pouring everything out, but then I was afraid my husband would read it and think I was weak or I couldn’t cope, so I started a blog, which he does not read. To me it was a release to talk about my pain, anguish and life, and I knew others were out there were feeling the same. I hope my blog will tell them realize it is ok to feel this way or that pain can be normal. Maybe by reading what I have written, they too will find a release.

So how do I hold it together? All I can say is I just do.

Chest Cold May Sign of Mesothelioma | Mesothelioma Help

Overall Number of Cancer Survivors Increasing, Number of Mesothelioma Deaths Rising Slightly

After recovering from the initial shock of being diagnosed with mesothelioma, most patients turn their thoughts to their treatment plan. Their primary goal is to kill as many of the cancer cells as possible offering them a longer, higher quality of life while battling the disease. Ultimately, mesothelioma patients want to become cancer survivors.

ACS Reports Good News for Many Cancer Patients

Although most people associate cancer survivorship with the time after treatment ends, the American Cancer Society defines a cancer survivor as “any person who has been diagnosed with cancer, from the time of diagnosis through the balance of life.” And according to its recently released report Cancer Treatment and Survivorship Facts & Figures 2012-2013, an estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012, and the ACS expects that number to continue to grow.

In fact, it estimates that by January 1, 2022, the population of cancer survivors will increase to almost 18 million. The ACS further defines survivorship by identifying three distinct phases: the time from diagnosis to the end of initial treatment; the transition from treatment to extended survival; and long-term survival.

The ACS reports death rates continue to decline for lung, colon, breast, and prostate cancers, which are responsible for the most cancer deaths. Since 1991, death rates have decreased by more than 30% for lung cancer in men, 40% for prostate cancer, and by more than 30% for colon cancer, breast cancer in women.

However, according to the ACS, a total of 1,660,290 new cancer cases and 580,350 deaths from cancer are projected to occur in the US in 2013. Close to 3,000 of those cases will be mesothelioma.

Mesothelioma Deaths Continue to Rise

In a separate report from the Minnesota Department of Health using statistics from the U.S. Centers for Disease Control and Prevention, the number of deaths from mesothelioma has slightly increased during the latest reporting period. The report covers mesothelioma deaths in the U.S. from 1999-2010. In 1999 there were 2,484 deaths, with a steady rise until 2010 where 2,745 deaths were reported.

The authors conclude that “despite the dramatic decline in asbestos use in the U.S since the early 1970s (down from 800,000 metric tons in 1973 to 1,100 tons in 2012) and implementation of more protective occupational health standards, asbestos remains present in millions of homes, offices, and industries and represents an ongoing potential exposure hazard to both workers and the public.”

Mesothelioma is a rare form of cancer typically affecting the lining of the lungs. Caused by exposure to airborne asbestos fibers, most cases of mesothelioma are diagnosed 30 years or more after exposure. The latency period can be as long as 50 years.

In 2011, Michele Carbone, M.D., Ph.D., director of the University of Hawaii Cancer Center, reported that more than 20 million people in the United States are at risk of developing malignant mesothelioma due to asbestos exposure. In addition, he reported that malignant mesothelioma mortality rates will increase 5 to 10 percent per year in most industrialized countries until about 2020.

Research Progress

With recent successes in cancer research and with many new initiatives, some mesothelioma patients are realizing longer survival rates and a better quality of life. The University of Texas MD Anderson Cancer Center is one institution that has been waging a war against cancer for years. The Center has over 30 specialists on staff that supports its multi-disciplinary approach to treating mesothelioma patients through its Mesothelioma Program. Most recently, MD Anderson started its Moon Shots Program “to dramatically accelerate the pace of converting scientific discoveries into clinical advances that reduce cancer deaths.”

In addition, other researchers have reported improved screening methods leading to early detection of mesothelioma as well as novel therapies for limiting side effects. Other breakthroughs have been made taking physicians closer to personalized treatment.

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!

Recovery From Mesothelioma Treatments Takes Time and Patience

Keep Yourself and Your Paperwork Organized During Mesothelioma Treatments

A diagnosis of mesothelioma brings an overwhelming feeling to every aspect of life… including being bombarded with information, paperwork, and bills. Here are some ways that my parents stayed organized throughout the process that may also help you out.

Small things can make a big difference. One of the first things we did was start writing things down. A notebook can be an invaluable resource to you. Write down everything you can: phone numbers, doctor appointments, information about financial, emotional, and spiritual resources, and anything you think is important. It’s better to have too much information than not enough. If you’re traveling, document hotel information, places to eat, addresses, etc. Keeping all this material in one place can help so much. Don’t worry about keeping it neat and organized. As long as you know what’s in there, you can find it in a pinch.

Make copies of EVERYTHING! When you pay a medical bill, get an appointment card, or receive a report… copy it. Many computer printers are fairly inexpensive and come with a built in copier. It is a worthwhile investment to make when you consider how much easier it will be to have multiples of various types of paperwork.

Try to keep all of your correspondence together as much as you can. Mom and Dad bought a nice size wicker basket that has become the home to everything mesothelioma related. Knowing that all your information is together is a great deal of comfort… as long as you remember to put things in there.

When you are going to an appointment, take as much with you as you can. When Mom and Dad go, they remove the information from the basket I mentioned, and put it in a tote bag that has traveled with them over this past year. It has come in handy so often to be able to immediately hand someone the information they are requesting that could take days to get otherwise. (Again, those copies come in handy!)

It’s easy for things to get lost in the shuffle when so much is happening in your life and the lives of your entire family. It’s not uncommon to forget doctors’ appointments even though the appointment cards are all on the refrigerator (another great tip), and that’s ok. It has happened to my parents, and will most likely happen to you, too. People are very understanding and are there to help you, so don’t beat yourself up if you forget.

Hopefully, these little tips will help you out, or give you some ideas on how to stay organized throughout this journey. If you lose something, don’t panic! Just say a little prayer (Saint Anthony always helps me out), relax, and charge ahead. Best of luck to all of you!

Category: Uncategorized