Fay­ola Fras­er

Sar­co­ma and Bone Can­cer Aware­ness Month, ob­served every Ju­ly, ex­ists to push an of­ten over­looked can­cer out of the shad­ows: to get more peo­ple screened, more symp­toms caught ear­ly, and more sto­ries told, so that no one fac­ing a di­ag­no­sis feels like they are the first per­son to walk that road. Sar­co­ma is a can­cer that de­vel­ops in the body’s con­nec­tive tis­sues, such as bone, mus­cle, fat, car­ti­lage, blood ves­sels, ten­dons, or the lin­ing of joints, rather than in or­gans or glands the way most com­mon­ly known can­cers (breast, lung, colon) do. Bone sar­co­mas, such as os­teosar­co­ma, arise in the bone it­self and most of­ten af­fect chil­dren, teens, and young adults, typ­i­cal­ly near the knee or up­per arm.

Nzin­ga Jaramo­gi’s bat­tle with os­teosar­co­ma de­tails one woman’s jour­ney bat­tling a bone sar­co­ma. Jaramo­gi, now 32, has a full, busy life as a wife, moth­er, the own­er of Zingys Tours & Trav­el Agency, the Ad­min­is­tra­tive As­sis­tant to the Ex­ec­u­tive Di­rec­tor of the Fondes Aman­des Com­mu­ni­ty Re­for­esta­tion Project and a trained Eco Tour Guide. She re­counts her ex­pe­ri­ences with can­cer that start­ed back in 2012. Be­gin­ning as a swelling that would not go away, a di­ag­no­sis then shook her world.

In ear­ly 2012, while ac­tive­ly in­volved in play­ing sports at COSTAATT, Jaramo­gi no­ticed that some­thing was wrong with her right leg. Cer­tain move­ments were be­com­ing dif­fi­cult, and her mo­bil­i­ty was re­strict­ed in a way that was very un­usu­al. Even­tu­al­ly, she no­ticed a swelling on her right fe­mur that would not go down, no mat­ter how much she mas­saged it, iced it, or em­ployed any of the usu­al home reme­dies.

In No­vem­ber 2012, just af­ter her birth­day, she did an X-ray and was sub­se­quent­ly giv­en the re­sults to take to her doc­tor. As most peo­ple do when they are hand­ed a re­port full of un­fa­mil­iar med­ical lan­guage: she searched for what was in the re­port be­fore tak­ing it to the doc­tor. “The re­port said the find­ings were con­sis­tent with os­teosar­co­ma. When I looked up what os­teosar­co­ma was, that’s when every­thing came crash­ing down. I was dev­as­tat­ed. It was a night­mare.” Dis­be­lief, fear, grief, and shock ar­rived at once. Her doc­tor, who she de­scribes as “so sup­port­ive,” Dr Car­o­line Grant, re­ferred her to the Port-of-Spain Gen­er­al Or­thopaedic Clin­ic, and that is where her jour­ney to re­cov­ery be­gan.

Os­teosar­co­ma is a type of bone can­cer, a ma­lig­nant tu­mour that forms in bone tis­sue, most of­ten in the long bones near the knee (the low­er fe­mur or up­per tib­ia) or in the up­per arm near the shoul­der. A biop­sy con­firmed what the X-ray had sug­gest­ed. The his­tol­ogy re­port showed a high-grade spin­dle cell tu­mour in her right leg, an ag­gres­sive can­cer. Im­me­di­ate­ly, the op­tion Jaramo­gi was giv­en was am­pu­ta­tion. Call­ing her moth­er, who came straight to the hos­pi­tal, they de­cid­ed to­geth­er to seek a sec­ond opin­ion be­fore ac­cept­ing am­pu­ta­tion as the on­ly path for­ward.

Chemother­a­py at the St James clin­ic fol­lowed, and with it came the sick­ness close­ly as­so­ci­at­ed with chemother­a­py. Some days Jaramo­gi felt cer­tain she would make it through. Oth­er days, de­pres­sion, fear and de­feat took hold. Still, she says, “Al­though it was the most chal­leng­ing ex­pe­ri­ence of my life, the en­cour­age­ment from the peo­ple around me helped make my re­cov­ery pos­si­ble.” She and her fam­i­ly si­mul­ta­ne­ous­ly kept push­ing for oth­er opin­ions, kept treat­ing am­pu­ta­tion as a last re­sort rather than a fore­gone con­clu­sion, and kept con­sult­ing spe­cial­ists in Trinidad, even­tu­al­ly look­ing abroad for a bet­ter op­tion.

That search led to Ger­many. Jaramo­gi’s fam­i­ly, friends, and wider com­mu­ni­ty in Fondes Aman­des, St Ann’s ral­lied around her, rais­ing the funds need­ed to send her to Ham­burg for spe­cialised treat­ment she could not ac­cess at home. She un­der­went limb sal­vage surgery at Agaple­sion Di­akoniek­linikum Ham­burg, per­formed by Pro­fes­sor Dr Jür­gen Bruns, an or­thopaedic sur­geon spe­cial­is­ing in mus­cu­loskele­tal on­col­o­gy. The surgery was a suc­cess. It gave her a sec­ond chance at life and, against all odds, let her keep her leg.

What fol­lowed was months of re­ha­bil­i­ta­tion that de­mand­ed a dif­fer­ent kind of strength than the di­ag­no­sis had: the slow, unglam­orous work of re­cov­ery. “Go­ing through that ex­pe­ri­ence,” she re­counts, “taught me re­silience, grat­i­tude and the im­por­tance of nev­er giv­ing up, even in the face of life’s great­est chal­lenges.”

Jaramo­gi in­sists that she did not do any of it alone. Her spir­i­tu­al com­mu­ni­ty, the Rei­ki com­mu­ni­ty she was part of, her lec­tur­ers and class­mates at COSTAATT, and her fam­i­ly and friends sur­round­ed her through­out. Her moth­er, Ak­i­lah Jaramo­gi, was “one of my great­est sources of strength. She stood by me through­out the en­tire ex­pe­ri­ence and con­tin­u­al­ly en­cour­aged me to re­main hope­ful and strong.” One of her clos­est friends ac­com­pa­nied her to Ger­many, sit­ting through phys­io­ther­a­py and re­ha­bil­i­ta­tion ses­sions and of­fer­ing the kind of every­day emo­tion­al sup­port that mat­tered most, be­ing far from home and fright­ened.

Jaramo­gi re­mem­bers the im­por­tance of de­lib­er­ate­ly sur­round­ing her­self with pos­i­tiv­i­ty, peo­ple who could bring laugh­ter and joy. She al­so leaned in­to her spir­i­tu­al­i­ty, af­fir­ma­tions and her Rei­ki prac­tices to steady her mind and process her phys­i­cal, men­tal and emo­tion­al chal­lenges.

To­day, more than a decade on, Jaramo­gi de­scribes her re­cov­ery as “fair­ly good.” Cold weath­er still brings pain to her leg, and she has not re­gained full mo­bil­i­ty. But she “re­mains deeply grate­ful be­cause I still have both of my legs and I am able to do most of the things I used to do be­fore.” She has learned to mea­sure her progress by how far she has come rather than dwelling on what she lost, and she takes each day as it ar­rives, grate­ful for the strength and in­de­pen­dence that re­main hers.

Her ad­vice for any­one fac­ing a se­ri­ous ill­ness car­ries the weight of some­one who could’ve lost her pre­cious limbs if she did not ad­here to it. “Seek a sec­ond opin­ion, and a third if you need one. Don’t feel pres­sured to ac­cept the first op­tion with­out ex­plor­ing all the pos­si­bil­i­ties. If I ac­cept­ed the first rec­om­men­da­tion I re­ceived, I would’ve been an am­putee to­day,” she says. In­stead, her per­sis­tence in seek­ing oth­er opin­ions is the rea­son she still walks on two legs.

Be­yond the med­ical ad­vice, she wants peo­ple to hold on­to some­thing less tan­gi­ble but no less im­por­tant: faith. “Be­lieve things can work out even when the odds look im­pos­si­ble. Keep peo­ple around you who lift you up rather than drag you down. And nev­er give up hope, be­cause on the hard­est days, hope may be the on­ly thing car­ry­ing you for­ward.”