[MOL] Re-introduction in order + some great references [01039] Medicine On Line


[Date Prev][Date Next][Thread Prev][Thread Next][Date Index][Thread Index]

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



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
------------------------------------------------------------------------
This is an automatically-generated notice.  If you'd like to be removed
from the mailing list, please visit the Medicine-On-Line Discussion Forum
at <http://www.meds.com/con_faq.html>, or send an email message to:
majordomo@lists.meds.com
with the subject line blank and the body of the message containing the line:
unsubscribe mol-cancer your-email-address
where the phrase your-email-address is replaced with your actual email
address.
------------------------------------------------------------------------