[MOL] Re-introduction in order + some great references [01049] Medicine On Line


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[MOL] Re-introduction in order + some great references



Wonderful, I had not heard this before  - truly inspirational! My first
thought was that you sure been through the mill and had a flash of you
being flattened by wheels but the wheels were flat like a steam roller.
You came out thin like a pancake. You were then hung out to dry on a
clothes line. While you were hanging there you were healed by the sun
and wind and rain and inflated. There you are John, still flat here and
there and soon you may not need Viagra. God's blessings to you, Jeanne 
jlehner@nyee.edu wrote:
> 
> Well my family, since I have been a wayward child these past months, I felt
> it only appropriate to re-introduce myself.  Those like Marty (my brother
> who was told he was an only child), Lil (my Auntie who has opened doors for
> me), Jeanne, Mam, Nanc, and some other "old timers" know me only too well
> (which means "thought we got ride of that guy!")  There are many both active
> and lurking out there who have no idea what my journey has been.  It all
> started with a sip of soda that wasn't.
> 
> While out to lunch with an associate who is a scientist and works with me at
> a Cancer Center in New York, I went to take a sip of soda through a straw
> and suddenly realized that I was unable to do so because I could not create
> the suction I had taken for granted.  That is when I realized that I had a
> small fisher in the center of the hard palate of the roof of my mouth.  I
> continued to confirm, during the rest of the day, that I could indeed draw
> air into my mouth through the hole in my mouth.  I made an appointment that
> early February afternoon with a local ENT in Westchester county.  A week
> later, I was in his office hearing the words "...I think it may be cancer."
> and feeling the life flow out of me.  How was I going to tell my wife and my
> four daughters, two of who were 3 year old twins!  This can't be happening
> to me.
> 
> The biopsy the following week confirmed Squamous Cell Carcinoma, Stage 4.  I
> remember holding my wife and the two of us crying as if it was this morning.
> It took me several days of playing the game of what if's...what if I do
> nothing, what if I only go for radiation, etc.  I finally focused and began
> a frantic search for information about cancer, SSC, cancer centers,
> treatments, etc.  I also shared my diagnosis with trusted associates at the
> Cancer Center where I worked.  They were wonderful in paving the way for me
> and providing information and advice.  I went to Memorial Sloan Kettering
> Cancer Center and, after receiving a treatment plan, went to John Hopkins
> for a second opinion.  Since they were the same, I chose Memorial as being
> closer to my home.
> 
> Next came the task of telling the children and planning how best to prepare
> them for what was ahead.  That included shaving a beard with their help that
> I had since the 70's, explaining what was going to be done to me in terms of
> surgery (as much as we knew at that time), and contacting teachers and
> school psychologists for support for the kids.
> 
> On March 7, 1997 I went into surgery at Memorial.  Sixteen hours later I was
> in recovery.  During that time I had four teams of surgeons...ENT oncology,
> dental oncology, orthopedic surgeons, and plastic surgeons.  My nose and
> upper jaw were removed, bone from my wrist fashioned into a new jaw, skin
> from my thigh taken to create a new palate, and bone from my hip taken to
> replace the wrist bones.  Talk about feeling like the Straw Man in the
> Wizard of Oz!  The truly amazing thing was I felt no pain when I finally
> came to in my room...had no recall of the recovery room.  After eighteen
> days in the hospital began the long process of weekly visits to the ENT onc,
> plastic surgeon and dental oncology.  Then came 37 treatments of radiation
> that left me so weak and burned that I dehydrated and was re-admitted for
> rehydration and a feeding tube.  In all, I was out of commission for six
> months.  In September of '97 I returned to work, weak, unsure of myself, and
> very afraid.  Thanks to the warmth and caring of co-workers, family and
> neighbors, I got through it all.  There are many stories I can relate and
> will as the opportunities arise.
> 
> Let me just say that I am now Director of Research at a hospital in NY City
> thanks in no small measure to the love and support that I found on this
> site.  I have met many who "live" here and have formed a family that will
> last an eternity.  Yes, there are several who are no longer with us yet not
> a day goes by that their presence is not felt, remembered and cherished.
> 
> Well, I have gone on enough.  As a participant on another cancer site, I got
> some informational sites posted by one of the more active members and felt
> that my family here could benefit.  Have a great weekend and God Bless.
> 
> John
> 
> http://www.ssa.gov/odhome/odhome.htm
> Social Security Disability:   The site will list an 800 number which will be
> answered promptly, take a small amount of information and you should hear
> from his local office within two working day.
> 
> http://www.ssa.gov/
> Social Security Office
> 
> EMOTIONAL SUPPORT
> 
> Cancer Supportive Care
> http://www.cancersupportivecare.com
> 
> Caregiver Network Inc.(CNI)
> http://www.caregiver.on.ca/content_main.html
> 
> National Cancer Institute: Information for People with Cancer
> http://rex.nci.nih.gov/PATIENTS/INFO_PEOPL_DOC.html
> 
> OncoLink: Information for Caregivers
> http://oncolink.upenn.edu/psychosocial/caregivers/
> 
> Shared Experiences of Cancer
> http://www.sharedexperience.org/
> 
> PATIENT HEALTH INSURANCE INFORMATION
> 
> Healthcare Users Group - HUG
> http://www.bighug.com/
> 
> Kassabaum-Kennedy Consumer Guides
> http://college.georgetown.edu/research/ihcrp/hipaa/
> 
> Managing Insurance Issues from the National Cancer Institute
> http://cancernet.nci.nih.gov/facing_forward/facmanag.html#anchor672935
> 
> Patient Advocate Foundation
> http://www.patientadvocate.org
> 
> Patient Advocacy
> http://www.patientadvocacy.org
> 
> FINANCIAL LINKS
> 
> http://www.medscape.com/ACCC/OncIssues/1998/v13.n04/oi1304.03/oi1304.03.html
> Reimbursement Hotlines; Many sources of drug companies that will reimburse
> for drugs
> To use Medscape, you will have to go to www.medscape.com, providing one
> time, a user id and password; thereafter a 'cookie' will allow total access
> to Medscape.
> 
> http://www.cancercareinc.org/patients/plinksfinancial.htm
> Links to Sites Dealing with Cancer
> 
> http://www.cancercareinc.org/patients/plinks2.htm
> Links to Sites Dealing with Cancer
> 
> http://www.vh.org/Patients/IHB/Cancer/NCI/FacingForward/04.html
> Managing Insurance Issues
> 
> http://www.go.com/WebDir/Business/Management/Insurance/For_individuals/Cance
> r_insurance
> Cancer insurance Web sites 1~11 of 11 reviewed Web sites
> 
> http://www.state.wi.us/agencies/oci/pub_list/pi-001.htm
> A Shopper's Guide to Cancer Insurance
> 
> http://www.americasguide.com/national.asp?cat=CIN
> You have chosen to search America's Guide category of Cancer Insurance
> 
> http://www.noah.cuny.edu/cancer/cancercare/library/cobra.html
> Information About COBRA
> 
> http://www.cancerinsurance.com/English/Collaterals/NY_Times_16NOV1997.html
> Conquering Cancer, but Way Behind on the Bills
> 
> http://noah.cuny.edu/cancer/cancercare/library/crisis.html
> Medical Insurance: A "Hidden Crisis" for a Growing Number of Cancer Patients
> 
> http://noah.cuny.edu/cancer/cancercare/services/financia.html
> Financial Assistance
> 
> http://www.charities-online.org/
> Under Construction, but one can email.
> 
> http://www.ccspm.org/links.htm
> Catholic Charities Web Links
> 
> http://www.unitedway.org/
> United Way
> 
> http://www.cancer.org/rig/righcost.html
> If You Need: Help With Medical Or Hospital Costs
> 
> http://www.rwjf.org/text.html
> The Robert Wood Johnson Foundation
> 
> http://www.themedicineprogram.com/info.html
> The Medicine Program
> 
> http://www.cancersupportivecare.com/drug_assistance.html
> Drug Assistance Programs from Pharmaceutical Companies
> 
> Just a final note...never, NEVER give up hope for as long as there is life,
> there is hope! John
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