Putting a National Spotlight on Asbestos

danger-asbestosA major investigation appearing on the front page of Monday’s Wall Street
Journal looks into fraudulent asbestos claims and the multi-billion dollar
mesothelioma litigation industry. (You can read an abstract of the article
http://online.wsj.com/article/SB10001424127887323864304578318611662911912.html?mod=WSJ_hps_MIDDLENexttoWhatsNewsTop. Full access requires a subscription.)

As a science-based organization and the largest independent source of
nonprofit funding for mesothelioma research, we do not advise on legal
issues. Nor do we provide referrals. As a foundation we firmly believe in
full adherence to ethical guidelines when addressing the impact of
mesothelioma. Our mission is based solely on putting patients first, and
mobilizing as many resources as possible to fund independent, peer-reviewed
research projects.

Asbestos liability is very complex and difficult to decipher, and it has
skewed the public’s understanding of mesothelioma, which impacts thousands
of individuals, regardless of age or background. But, just as we saw at
our annual symposium, there are new victories in the field of mesothelioma
- both in the labs and the clinics – that give us a lot to hope for. We
are finally very close to seeing treatments based upon a personalized
medicine approach having identified unique targets and genetic
alterations. I have never seen this much excitement among the medical
professionals who have dedicated their careers to finding a cure for
mesothelioma.

And while the economic, legal and political aspects of asbestos have never
received national attention like this before, it is our hope that the
national spotlight on this issue will help us lead to finding a truly
effective life-prolonging treatment for mesothelioma patients, and a cure
for this aggressive and neglected cancer. This important article, which
comes on the heels of our annual gathering, gives us a renewed sense of
hope and purpose.

Holidays and Stress

We are all in the midst of the holiday season and for those affected by mesothelioma this can be an extremely stressful time. I would like to urge those who are in need of support or just a good listener to call, I am in town for the holidays and readily available for a chat. If you would like I can facilitate an exchange of email address or phone numbers for a “buddy” to help you through the holiday. If you have lost touch with a member of the community this would be the perfect time to reach out and renew the relationship. You may find yourself running through a mix of emotions anger that your loved is no longer with you or even anger that they are not well enough to participate in the family traditions. Recognize that these emotions are normal and are part of the grieving process. If you do begin to feel that you can no longer cope reach out to a trained professional for assistance.

Expectations run high during the holidays and we have been trained to try and meet the families expectations less we disappoint someone. This year you might have to set some guidelines for yourself and make some general announcement as to how you can participate in the holiday festivities. Budgets can be particularly tight when you have an ill family member and it might be easier on the wallet and take considerably less time if limit gifts to the small children and if you’d like do a grab bag where you pick a name of one family member to buy for so everyone will have a gift under the tree. If dinner is too difficult you might consider a holiday brunch. If it is too much of a burden on any family member to host it you can consider meeting at a local breakfast place. If your loved one is too sick to attend, you might ask someone to give you some respite care for a few hours thus allowing you the time to be nourished by your loved ones.

For those that have lost loved ones some have told me that establishing new traditions made the day pass easier. Some volunteered at shelters and served dinner, others went to hospitals, nursing homes and some traveled to a far away place finding distance made it easier to fend off the holiday blues. If you have just lost your loved one and are physically and emotionally exhausted and have the means to do so, consider a spa where you can be pampered and begin to heal physically as stress takes a physical toll on all of us. If this is not within your budget, stay home and treat yourself to something special. You must give yourself permission to enjoy life and to heal and the holiday time can be the start of a new year and a new you. We also need to recognize that everyone in the family has been affected by this loss and are in different stages of grieving. A quiet call to discuss how best to handle the holidays can help to avoid misunderstanding or hurt feelings. Being alone is okay, just take some time to decide how much time is healthy for you to be alone. If you are able set a holiday table, prepare a simple meal, light some candles and cherish your memories they will always be with you.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

To Live Until We Say Goodbye

One of the great things about this community is the unedited and unconditional sharing of every aspect of our journey. Some are navigating peaks, others valleys, but we call out to each other, regardless of our location, with descriptions of the terrain and what we can see from our vantage.

The past week has been a difficult one for our community. Journeys have ended, and voices that used to call out to us have been silenced. For me, the sorrow of those losses has been compounded by finding myself on a part of the meso continuum that I had hoped to avoid a bit longer.

I’ve been lucky to date in that every time my meso reared its ugly head again, there was something in the treatment arsenal that beat it back into remission. But this time is just one time too many – there is nothing left to employ against relentless meso that won’t stand a good chance of killing me in the bargain. Like so many warriors before me, I find myself faced with physicians who are honestly stating that they have nothing to offer that might help me fight back even one more time. It’s like being trapped in that archetypal action movie scene where the victim shoots and shoots but misses and the bad guy keeps coming. The victim runs out of bullets as the villain sneers at the sound of the empty chamber clicking, while in desperation, the victim flings the empty gun at the bad guy to no effect….

So OK – now I’m here with steadily progressing disease and not even an empty gun to throw….what do I do? It took a few days of self-pity and panic to realize the answer: I do as I’ve always done – I live.

Our journeys with meso are really no different from any journey in life, but the nature of what has brought us all here  – the disease that rides with us –  has the effect of concentrating our experiences and emotions, boiling our life journeys down to more of their essence, and clarifying our priorities. Everything seems more acute, everything seems to carry more impact.

What would I be doing if I didn’t have meso?  Aside from a few physical activities that demand stamina beyond my current capability, nothing really.  The laundry would still require washing and meals preparation. The cats would still purr on my lap and solicit petting. I would still visit my friends and talk on the phone, and I would still engage in activities relating to public health. I would still watch my favorite TV shows and videos, read books, work crossword puzzles. I would still love my husband and smile at him sitting across the room. Nothing the doctors have said prevents me from doing any of those things. And nothing they said lets me know truly how long I have in which to do them.

 

If I were to seriously consider what meso has stolen from me, one answer might be an assurance of a future. But if I stop and think logically about it, even without meso, such an assurance is non-existent. I might hope to live a certain number of years based on a statistical median, but there’s no guarantee of my doing so.

Perhaps the answer might be that it has robbed me of physical abilities. But again, life held no assurances that I would remain physically intact or healthy throughout my span of years.  In fact, I could consider myself lucky that I was born whole and capable, and remained that way for more than fifty years. I can point to people born into wheelchairs who would love to have even one day of such functionality.

Well then, surely meso has stolen the comfort I took in investing in my life, with a fear of encroaching mortality causing me to view joys as potential losses. Most people go through life without maintaining a conscience awareness of how ephemeral they actually are. I haven’t enjoyed that relative bliss since my diagnosis – meso has always been there, the scars and the pain and the pills, the constant scans and check-ups, all a constant reminder that life wasn’t really normal.

But there is no “normal” really. There is only the journey we are on, whatever it consists of – the unique road we travel that is ours and ours alone. There is no map or GPS or any way to view ahead. For each of us, life lasts up to the moment it stops. No one can tell with any certainty when that will be for me or anyone I know.

In the past few days, I’ve had some people tell me not to give up and others tell me not to be pessimistic. Yet I am neither. Is the progression of my disease to this point a cause for general gloom? Not at all. I truly do believe that science is moving forward regarding meso, and that the increase in treatment options and clinical trials that have arisen since my diagnosis in 2002 hold real hope for the future.  I meant what I said at the last Symposium:  the day when meso is no longer a life-ender is just over the horizon. It’s the desired destination that many of you out there will get to see, I promise. That I may not get there myself is just the way the cookie crumbles.

I’m not surrendering so much as preparing myself for all eventualities. I have not given up on wanting to stay alive – if there was a treatment out there that would provide me with a reasonable shot at more time I’d take it. And if something new comes along in the interim, watch out – I’ll be butting and pushing my way to be first in line! I’m no different than anyone – humans are genetically programmed to want to live. To prefer life over death is a fairly essential survival strategy that nature has built in to us. But ultimately no one lives forever. At some point, and for some cause, all our journeys end. That too, is life….

I didn’t spend seven-plus years fighting meso on the physical front  - enduring surgery, chemo and radiation – only to capitulate and surrender the emotional ground. I’ve given meso time and mental anguish and body parts (I joke that I’ve been sending myself to heaven one piece at a time) and I sure as hell don’t plan on giving it my life one second sooner than the moment I die. All of us here and everywhere – we each have our lives for a brief period and no control over how long that period is to be or what exactly will end us.

The only thing we can do – the thing we are created to do – is to live our lives while we have them, up to the very moment we say goodbye. That’s what I plan to do for however many days are left me. I have people I want to see, letters I want to write, cats who need petting, and flowers that need tending…..miles yet to go before I sleep.

~June Breit