Umdlavuza Wegazi Wami Welashwa, Kodwa Ngisenezimpawu Ezingamahlalakhona

-Delile

• Ngifike kanjani lapha
• Ukuthola ilebula elifanele
• Engibhekane nakho selokhu ngaphulukiswa
• 1. I-peripheral neuropathy
• 2. Izinkinga zamazinyo
• 3. Umdlavuza wolimi
• 4. Isifo se-Graft-versus-host
• 5. Imiphumela emibi ye-Prednisone
• Ngibekezelela Kanjani
• 1. Ngiyakhuluma
• 2. Ngivivinya umzimba cishe nsuku zonke
• 3. Ngiyabuyisela

I-acute myeloid leukemia (AML) yami yelashwa ngokusemthethweni eminyakeni emithathu edlule. Ngakho-ke, lapho i-oncologist yami isanda kungitshela ukuthi nginesifo esingelapheki, ngokungadingekile ukusho ukuthi ngamangala.

Ngibe nokusabela okufanayo lapho ngithola i-imeyili engimemela ukuthi ngijoyine iqembu lengxoxo "lalabo abaphila ne-acute myeloid leukemia" futhi ngathola ukuthi "ngeziguli" ezazingena noma zingelashwa.

Ngifike kanjani lapha

Umdlavuza wegazi wangithola lapho ngineminyaka engu-48 ngiphilile. Umama ohlukanisile wezingane ezintathu ezinesikole ezihlala entshonalanga yeMassachusetts, ngangiyintatheli yephephandaba futhi ngingumgijimi okhuthele nomdlali wethenisi.

Lapho ngigijima umjaho i-Saint Patrick’s Road Race eHolyoke, eMassachusetts ngo-2003, ngazizwa ngikhathele ngokweqile. Kepha ngiqedile noma kunjalo. Ngaya kudokotela wami ezinsukwini ezimbalwa kamuva, futhi ukuhlolwa kwegazi kanye nomnkantsha wamathambo kwabonisa ukuthi ngangine-AML.

Ngathola ukwelashwa umdlavuza wegazi onolaka amahlandla amane phakathi kuka-2003 no-2009. Ngathola imijikelezo emithathu yokwelashwa ngamakhemikhali eDana-Farber / Brigham naseWomen’s Cancer Centre eBoston. Futhi ngemuva kwalokho kwafika ukufakelwa kwe-stem cell. Kunezinhlobo ezimbili eziyinhloko zokufakelwa, futhi ngazithola zombili: i-autologous (lapho amaseli ama-stem evela kuwe) ne-allogenic (lapho amaseli ama-stem evela kumnikeli).

Ngemuva kokubuyela emuva kabili nokuhluleka kokuxhunyelelwa, udokotela wami wanginikeza ukufakelwa okwesine okungajwayelekile nge-chemotherapy enamandla kanye nomnikeli omusha. Ngathola amangqamuzana ama-stem aphilile ngoJanuwari 31, 2009. Ngemuva konyaka ngihlukanisiwe - ukunciphisa ukubekeka engcupheni kokuchayeka kumagciwane, engakwenza emva kokufakelwa ngakunye - ngaqala isigaba esisha empilweni yami… ngiphila nezimpawu ezingalapheki.

Ukuthola ilebula elifanele

Ngenkathi le miphumela izohlala impilo yami yonke, angizibheki "ngigula" noma "ngihlala ne-AML," ngoba angisenayo.

Abanye abasindile babizwa ngokuthi “baphila nezifo ezingalapheki,” kanti abanye baye basikisela “ukuhlala nezimpawu ezingalapheki.” Leyo ilebula izwakala ingifanele kangcono, kodwa noma ngabe lithini igama, abasindile abanjengami bangazizwa sengathi bahlala bebhekene nokuthile.

Engibhekane nakho selokhu ngaphulukiswa

1. I-peripheral neuropathy

Ukwelashwa ngamakhemikhali kwabangela ukulimala kwezinzwa ezinyaweni zami, okwaholela ekubeni ndikindiki noma ukuhayiza, ubuhlungu obubukhali, kuye ngosuku. Kuphazamise nokulinganisela kwami. Akunakwenzeka ukuthi uhambe.

2. Izinkinga zamazinyo

Ngenxa yomlomo owomile ngesikhathi samakhemikhali, nangezikhathi ezide lapho nganginesistimu yomzimba ebuthakathaka, amagciwane angena emazinyweni ami. Lokhu kubenze bathena futhi babola. Ukuphathwa yizinyo elilodwa kwakukubi kakhulu engangikwazi ukukwenza ukulala kusofa ngikhale. Ngemuva komsele wempande ohlulekile, ngakhipha izinyo. Kwakungomunye we-12 engilahlekile.

3. Umdlavuza wolimi

Ngenhlanhla, udokotela ohlinzayo wamazinyo wakuthola lapho wawumncane ngesikhathi esisodwa sokukhishwa kwamazinyo. Ngithole udokotela omusha - i-oncologist yekhanda nentamo - osuse isikejana esincane ohlangothini lwesobunxele lolimi lwami. Kwakusendaweni ezwelayo futhi ephulukisa kancane futhi kubuhlungu ngokweqile cishe amasonto amathathu.

4. Isifo se-Graft-versus-host

I-GVHD yenzeka lapho amaseli abanikeli ahlasela ngephutha izitho zesiguli. Bangakwazi ukuhlasela isikhumba, uhlelo lokugaya ukudla, isibindi, amaphaphu, izicubu ezixhuma kanye namehlo. Kimi, kuthinte amathumbu, isibindi nesikhumba.

I-GVHD yamathumbu ibiyimbangela yesifo sokudumbana komzimba, ukuvuvukala kwokholoni. Lokhu kwakusho isikhathi esingaphezu kwamasonto amathathu esidabukisayo sohudo. kuholele kuma-enzyme aphezulu wesibindi anamandla okulimaza lesi sitho esibalulekile. I-GVHD yesikhumba yenza izandla zami zavuvukala futhi yabangela ukuba isikhumba sami siqine, kwanciphisa ukuguquguquka. Zimbalwa izindawo ezinikeza ukwelashwa okuthambisa isikhumba sakho kancane kancane:, noma i-ECP.

Ngishayela noma ngigibela amamayela angama-90 ngiya eKraft Family Donor Center eDana-Farber eBoston. Ngilala ngithule amahora amathathu ngenkathi inaliti enkulu idonsa igazi engalweni. Umshini uhlukanisa amaseli amhlophe angaziphathi kahle. Bese belashwa nge-ejenti ye-photosynthesizing, bevezwa ukukhanya kwe-UV, bese bebuya ne-DNA yabo ishintshiwe ukubathulisa.

Ngiya njalo ngesonto, ngehle kabili ngesonto lapho lokhu kwenzeka ngoMeyi 2015. Abahlengikazi bayasiza ukudlulisa isikhathi, kodwa kwesinye isikhathi angikwazi ukuzibamba ngikhala lapho inaliti ishaya inzwa.

5. Imiphumela emibi ye-Prednisone

Le steroid inyathela phansi i-GVHD ngokunciphisa ukuvuvukala. Kepha futhi kunemiphumela engemihle. Umthamo wama-40-mg obekufanele ngiwuthathe nsuku zonke eminyakeni eyisishiyagalombili eyedlule wenza ubuso bami bukhukhumale futhi wanciphisa nemisipha yami. Imilenze yami yayiyirabha kangangokuthi nganginyakaziswa lapho ngihamba. Ngolunye usuku ngenkathi ngihamba nenja yami, ngawa ngawa emuva, ngathola olunye lohambo oluningi lokuya egumbini lezimo eziphuthumayo.

Ukwelashwa ngokomzimba kanye nomthamo owehla kancane - manje nje u-1 mg ngosuku - kungisizile ukuthi ngiqine. Kepha i-prednisone yenza buthakathaka amasosha omzimba futhi iyimbangela yomdlavuza omningi wesikhumba engiwutholile. Ngibasuse ebunzini lami, umthambo wezinyembezi, isihlathi, isihlakala, ikhala, isandla, inkonyane, nokuningi. Kwesinye isikhathi kuzwakala ukuthi njengoba nje umuntu ephulukisile, enye into ethambile noma ephakanyisiwe itshengisa enye.

Ngibekezelela Kanjani

1. Ngiyakhuluma

Ngiziveza nge-blog yami. Lapho ngiba nokukhathazeka mayelana nokwelashwa kwami ​​noma ukuthi ngizizwa kanjani, ngikhuluma nodokotela wami, udokotela, kanye nodokotela. Ngithatha isenzo esifanele, njengokulungisa imishanguzo, noma ukusebenzisa ezinye izindlela lapho ngizizwa ngikhathazekile noma ngicindezelekile.

2. Ngivivinya umzimba cishe nsuku zonke

Ngiyayithanda ithenisi. Umphakathi wethenisi ubusisekela ngendlela eyisimanga futhi ngithole abangani bempilo yonke. Iphinde ingifundise isiyalo sokugxila entweni eyodwa ngesikhathi esikhundleni sokuthathwa ukukhathazeka.

Ukugijima kungisiza ukuthi ngibeke imigomo futhi ama-endorphin akhipha wona angisiza ngihlale ngizolile futhi ngigxile. I-Yoga, okwamanje, ithuthukise ibhalansi yami nokuguquguquka.

3. Ngiyabuyisela

Ngivolontiya ohlelweni lokufunda nokubhala lwabantu abadala lapho abafundi bengathola usizo ngesiNgisi, izibalo, nezinye izihloko eziningi. Eminyakeni emithathu ngiyenza, ngithole abangane abasha futhi ngazizwa nganeliseka ngokusebenzisa amakhono ami ukusiza abanye. Ngijabulela nokuvolontiya ohlelweni luka-Dana-Farber's One-to-One, lapho abasindile njengami besekela labo abasezigabeni zokwelashwa zakuqala.

Yize abantu abaningi bengazi, "ukwelashwa" kwesifo esinjenge-leukemia akusho ukuthi impilo yakho ibuyela kulokho eyayikade ikuko. Njengoba ukwazi ukubona, impilo yami ngemuva kwe-leukemia igcwele izinkinga kanye nemiphumela emibi engalindelekile evela emithini yami nasendleleni yokwelashwa. Kepha ngaphandle kokuthi lezi yizingxenye eziqhubekayo zempilo yami, ngithole izindlela zokulawula impilo yami, inhlalakahle, nesimo sami sengqondo.

URonni Gordon ungumsindile we-acute myeloid leukemia kanye nombhali we Ukugijimela Impilo Yami, eyabizwa ngokuthi enye ye- amablogi ethu aphezulu wegazi.