Kukaan ei yleensä unohda varaamaansa kampaajakäyntiä, mutta geenipolille varatun ajan voi sen sijaan ihan hyvin unohtaa. Mieheni kysyi maanantaina aamukahvinsa takaa, mihin aikaan se kliinisen genetiikan polikäynti olikaan. Vastasin, että ensi viikon maanantaina. Myöhemmin päivällä istuin sohvalla teekuppi kädessäni ja kirja kourassani, kun puhelimeni piipitti jotakin. En pitänyt kovaa kiirettä kännykän luo, kun oli hyvä kappale kesken.
Ihan hyvä, että sitten kuitenkin tarkistin viestin. Puhelin muistutti, että minulla olisi kliinisen genetiikan aika Tyksissä klo 13. Kello oli 12.52. Tietenkin. Vedin takin päälle ja hiukset päähän ja juoksin parkkipaikalle. Räpelsin kännykälläni yrittäen etsiä etukäteen, missä on rakennus seiska. En ihan ymmärtänyt kiirepaniikissa karttaa ja lähdin ajelemaan. Jouduin vielä soittamaan polille pahoitellakseni myöhässä oloa, sillä siinä kiirekiukuspäissäni. auton sisällä muille autoilijoille kiroillen, en tietenkään löytänyt mitään parkkipaikkaa.
Kun viimein pääsin perille, olo oli aika hölmistynyt. Täällä sitä nyt ollaan, vartti myöhässä, enkä ehtinyt edes jännittää. Edes miestä en ottanut mukaan, vaikka se aamulla tarjoutui. Pian lääkäri tulikin hakemaan.
Huone oli vähiten lääkärin vastaanoton näköinen kaikista lääkärinvastaanotoista, joilla olen käynyt, Se oli enemmänkin toimiston ja kokoushuoneen välimuoto ja vain valkoinen lääkärintakki muistutti, että nyt ollaan lääkärillä. Tuijotin lääkäriä ja hänen kädessään pitämiään papereita kuin peura ajovaloissa. Lääkäri aloitti, että hän kertoo nyt heti ensimmäisenä tulokset, niin päästään sitten asiassa eteenpäin.
Ei yhtään syöpägeenivirhettä. Ei rintasyöpägeeniä, eikä sellaistakaan, joka aiheuttaa Hogkinin tautia ja muitakin syöpiä. Rintasyöpä tulee joka tapauksessa kymmenelle prosentille väestöstä ja tässä kohtaa voidaan olettaa, että nuorena sairastumiseni johtuu Hodgkinin taudin yhteydessä annetusta sädehoidosta. Kävimme läpi sukupuutani ja lääkäri totesi, ettei sukulaistenikaan tarvitse lähteä testeihin, sillä yhteyksiä eri syöpien välillä ei löydy.
Vaikka geenitutkimus oli varsin laaja, ei se silti kerro kaikkea. Jäljelle jää paljon harmaata aluetta – minulla saattaa löytyä useampi lievästi syöpää aiheuttava geeni, joita emme vielä tunne. Voi olla, että niillä on ollut sairastumisessani jokin yhteys. Voin lääkärin mukaan kuitenkin nyt ajatella, ettei sairastumiseni johdu geeneistä. Silti, kun olen sairastunut näin nuorena, en voi vielä syyttää elintapojakaan.
Lähdin polilta yhtä ymmälläni, kuin sinne meninkin. Nyt pitäisi varmaan juhlia? Olla hyvällä fiiliksellä?
Tottakai olen iloinen siitä, että tyttäreni, siskoni tai serkkuni eivät ole korkeassa riskissä sairastua. Samalla en voi kuitenkaan olla miettimättä, että miten ihmeessä minä sitten sairastuin, kun en voi tutkimusten perusteella syyttää geenejä, enkä omia elintapojanikaan?
Näin nuorena ei tosiaan pysty elintavoillaan syöpää aiheuttamaan, vaikka yrittäisi. Silti mielessäni pyöri, että näillä elintavoillako minä sairastuin? Minä, joka olen viime sairastumisesta asti jatkuvasti selvittänyt, mitkä ovat parhaita ruokavalintoja syövän ehkäisyä ajatellen ja sitten toiminut niiden mukaan? Minä, joka välttelen kaikkea prosessoitua, valitsen useimmiten kasvisruuan ja pyrin herkutellessanikin parempiin vaihtoehtoihin. Minä, joka halusin imettää pitkään oikeastaan ihan vaan siksi, että pitkä imetys vähentää rintasyöpäriskiä, ja niinhän minä teinkin, imetin lastani noin vuoden ja 9 kuukautta, (mikä on Suomen mittapuulla suhteellisen pitkä aika) melkein siihen asti, että syöpähoidot alkoivat. Niiden alkaessa imetyshän olisi joka tapauksessa pitänyt lopettaa.
Kun on vuosia tehnyt ihan oikeasti hartiavoimin töitä sen eteen, ettei sairastuisi uudelleen, ja sitten sairastuu kuitenkin, tuntuu se aika kohtuuttomalta. Kun geenivirhettä ei löytynyt, en enää tiedä mitä syyttää. Sillä joskus tuntuu, että olisi ihan mukava, jos minulla olisi jonkunlainen syntipukki, jonka vika tämä sairaus olisi. Ettei tarvitsisi syyttää ihan vaan helvetin huonoa tuuria ja opittava elämään sen kanssa, että paskan määrä ei suinkaan ole vakio. Toisilla vaan on huonompi tuuri, kuin toisilla. Joskus syöpä tulee, jos se on tullakseen, yritti sitä ehkäistä miten paljon tahansa. Vaikka syöpätutkimus on edennyt hurjaa vauhtia viime vuosikymmenet, on aika paljon vielä selvittämättä.
Sairastuin Hodgkinin tautiin nuorena, 16-vuotiaana. Vielä ei ole löytynyt tietoa, miksi juuri tuohon syöpään sairastutaan. Rintasyöpään minulla oli edellisen syövän hoidoista johtuen 75-kertainen riski. Toisaalta se on kuitenkin jo aika iso tekijä. Vaikka geenivirhettä ei löytynytkään, saatetaan terve rintani joutua poistamaan ihan tämän riskin takia. Rintasyöpään sairastujista vain 10 prosenttia on niitä, joilla todetaan geenivirhe. Silti meitä nuorena sairastuneita on useita. Välillä sitä unohtuu pohtimaan, miksi sairastui. En usko rangaistuksiin tai siihenkään, että kaikella olisi tarkoitus – en enää sairastuttuani vakavasti jo toisen kerran, edelleenkin alle kolmekymppisenä. Kun mietin, miksi sairastuin, mietin sitä, miten keho toimii ja miten kasvaimet syntyvät.
Geenipolin lääkäri totesi, että ehkä tulevaisuudessa voimme selvittää geenejämme tarkemmin ja havaita mahdolliset korkeammat alttiudet sairastua. Ehkä meille annetaan silloin yksilöllistä elämäntapaneuvontaa tai jopa ennaltaehkäiseviä hoitoja, mutta se aika on vielä edessä. Emme ole päässeet sinne asti.
Ja onhan se oikeasti tosi hieno asia, ettei geenivirhettä löytynyt. Vaikka kuinka tulevaisuudessa osattaisiin hoitaa sairaudet paremmin, on tietysti aina helpompaa, jos tunnistettavia geenivirheitä ei ole löytynyt.
Koko maanantain olin aika allapäin, mutta eilen sain toisenlaisen muistutuksen asioista, jotka minulla ovat hyvin. Kävin kirjastossa, ja hieman väsyneen oloinen mies tuli kysymään, olenko hyvä tietokoneiden kanssa. Vastasin, että no, tiedän niistä jotain ja hän kertoi, että ei saa asuntohakemusta lähetettyä. Ajattelin, että eipä minulla nyt ole mihinkään kiire. Hän oli kirjoittanut muutaman päivämäärän väärässä muodossa ja neuvoin, miten ne kuuluu kirjoittaa. Järjestelmän herjatessa, että päivämäärä on väärässä muodossa, silmiini osui kohta, johon piti täyttyy nykyinen osoite. Mies oli kirjoittanut: ”Asun ulkona”. Sydämeni jätti yhden lyönnin väliin.
Mies sai lomakkeen lähetettyä ja kiitteli minua vuolaasti. Hymyilin ja lähdin kotiin.
Kotiin. Minulla on koti, johon mennä. Siellä perhe odottamassa. Kaapissa ruokaa. Laskut maksettu. Jouluvalot ikkunassa.
Kelan lomakkeiden täyttäminen on välillä raivostuttavaa ja nöyryyttävää, mutta minulla on siihen valmiudet. Toiset eivät saa lomakkeita täytettyä, koska heillä ei ehkä ole tietokonetta, jolla kirjoittaa, tai jaksamista katsoa joka ikinen pilkku paikoilleen.
Asiat ovat, kuitenkin, aika hyvin. Huomenna jatkuvat hoidot cef-sytostaateilla. Eteenpäin mennään, siis.
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