Forum,Winter 2011
9
ACaregiver’s Story: My Personal Journeywith theCutaneous
Lymphoma Foundation
JulieGarner
Atlanta, GA
A
s the caregiver tomy63 year-old
mother,TamiLopez,whowasdiag-
nosed in 2009with cutaneousT-cell lym-
phoma (CTCL), Iwas informedof the
CutaneousLymphomaFoundationdur-
ingmom’s initial oncology consultation.
TheFoundation’swebsitehas been a life-
line formy family throughour journey.
Tami’s battlewithCTCLbegan around three years ago
and is not unlikemanyothers fighting thisdisease. I remem-
ber her having these “flareups” that included rashes, terrible
itching, pain, and swelling. Shewas biopsied, diagnosedwith
eczema, and treatedwith steroids.
Mom experiencedmanyof these episodes, each a little
worse than theonebefore.By summer 2009,we knew that
somethingmorewas goingon andbegan seeking the adviceof
other doctors...internists, allergists andother dermatologists.
Eventuallymorebiopsieswereperformed, andnoneof uswere
prepared for the result.Twodays beforeChristmas, after 15
years in remission frombreast cancer,mom learned shehad
cutaneousT-cell lymphoma.
A varietyof treatments began right away,whichwere chal-
lenging anddrainingonmom; however,wewereoptimistic.
Within amonthof the firstPET scan,we learned that the can-
cerwas now inher blood.A secondPET scan showedmore
activity in the lymphnodes, and adecisionwasmade to switch
treatment to chemotherapy.Tami recently completedher sev-
enth infusion and is beginning to see some improvement inher
bloodwork.
Because theCutaneousLymphomaFoundationwebsite
educatedmeon the available treatment options, Iwent into
eachoncology appointment equippedwithquestions to ensure
thenext courseof treatmentwas right formymother.
Being the caregiver to a lovedone strickenby a rare
disease is so challenging.Watchingmybeautifulmom suffer
– feeling sohelpless, so afraidof hurtinghermore – isdevastat-
ing.
So, I haveworkedhard todo everything I cando to
find resources and support to ensure that her qualityof life
is thebest it canbe.Oneway I havedone that is tomake
contactwith theCTCL-MFOnlineSupportGroup –doing
thismarked a turningpoint in thequalityof caremymother
received. I contacted the listservwithquestions regarding
mom’s fragile skin andhowbest to treat her.The responses
tomyquestionswere immediate, sohelpful andoverwhelm-
ing. Iwas not alone.Thereweremanyotherswilling tohelp,
to share their lives andpersonal journeyswithme, to share
what techniques gave their lovedones relief. Igained renewed
strength, energy, and,most importantly, hope.
At the suggestionof other caregivers on the listserv, I
engaged awound care specialistwho treatedmom sogently
andwith such compassion. She received the level of care she
deserved andwas comfortable for the first time inmonths. It
trulywas a turningpoint in thequalityofmom’s life.
Itmeans somuch tohave aplace like theCutaneous
LymphomaFoundation to turn for information, advice, com-
passion, andunderstanding. I thank theFoundation somuch
for itsdedication topatients likemymom and caregivers like
mewho relyon it as adaily lifeline.
Cutaneous Lymphoma FoundationReceives Program Partner Awardat LymphomaResearch
Foundation’sNorthAmerican Educational Forumon Lymphoma
OnSeptember 24-26, 2010, theCutaneousLymphomaFoundationpartneredwith the
LymphomaResearchFoundation for its 15thAnnualNorthAmericanEducationalForum
onLymphoma, theworld’smost comprehensiveeducational conference forpeoplewith
lymphoma. Under thedirectionofMichaelCrump,MD,UniversityofToronto, and
StephanieA.Gregory,MD,RushUniversityMedicalCenter,more than 30 lymphoma
researchers andclinicianspresented toover400attendees from 31 states andCanada.
During theevent,HollyPriebe, theCutaneousLymphomaFoundation’sDirectorof
Operations andFinance, receivedaProgramPartner awardbestowedupon theFoundation
in recognitionof its strongpartnershipwith theLymphomaResearchFoundation in service
topeopleaffectedby lymphoma.
