Easily the scariest month of my whole life.

Tere jälle!

Pole jälle väga kaua postitanud, aga ma ise tunnen, et ma alustasin seda blogi eesmärgiga kirjeldada oma teekonda läbi vähiravi ja kuna see teekond on niiöelda “läbi”, siis nagu polegi rohkem millestki postitada. Ja kui postitakski, siis enamus postitusi oleks stiilis “mul on hea olla, ilm on ilus, ma olen õnnelik,” aga seda pole kellegil huvitav lugeda. 

Ilmselt praegu seda lugedes Te mõtlete, et miks ma siis praegust postitust kirjutan… Nagu pealkiri ütleb, siis maikuu oli kõige jubedam kuu mu elust. Palju jubedam kui  eelmise aasta juulikuu, kui mul diagnoositi lümfoom. Ei, ma ei ole hulluks minemas. Ja ma tean, et praeguseks hetkeks oled sa vägagi huvitatud kuulma, et mis siis juhtus (klatš müüb, ma tean)? See saab olema pikk jutt, nii et minge keetke teed-kohvi ja seadke end mugavalt sisse, sest ma viin Teid nüüd kiirele rallile.

See jubedus algas maikuu teisel nädalal kui ma läksin oma regulaarsele kohtumisele hematoloogiga (iga 3 kuu tagant), et arutada kuidas ma end tunnen ja mida mu viimane PET-KT uuring näitas. Nagu ma mainisin, siis ma tunnen end ülihästi ja ma olen taastunud nii kiiresti, arvestades, et ma lõpetasin ravi alles 6 kuud tagasi. Seega ilmselgelt ma läksin kohtumisele hea tujuga ja tahtsin selle lihtsalt kaelast ära saada (7 tundi edasi-tagasi autosõitu Canberra-Sydney vahel), et kuskile vegan rämpstoitu sööma minna.

Ma hematoloogi ruumi sisse ja jutustasime niisama maast ja ilmast kuni ühel hetkel ta muutus suhteliselt tõsiseks ja ütles, et mu viimase uuringu tulemus ei olnud päris see mida ta oodanud oli…

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Te ilmselt ei kujuta ettegi kuidas ma end antud hetkel tundsin. Ma arvan, et kui ma oleksin püsti seisnud, siis mu jalad oleksid tundunud nagu ülekeedetud spagetid. Ma ei osanud nagu mittemidagi öeldagi ja küsisin, et “miks ei olnud?” Ta näitas näpuga viimase uuringutulemuse piltidele ja kuidas “miskit” oli kasvanud paremale poole tüümust. Vahemärge: originaalis oli lümfoom vasakul tüümusest. Seega see oli totaalselt midagi uut. Arst tundus suhteliselt mures ja tahtis asja veidi rohkem edasi uurida. Kuna ajaliselt ( ja rahaliselt) on suhteliselt mõttetu üle päeva Sydneysse uuringutele sõita, siis üheskoos otsustasime, et edaspidi hakkan hematoloogi juures käima Canberra haiglas. Mulle sobib. Kodust ainult 15 minuti autosõidu kaugusel.

Ma päris täpselt neid kuupäevi enam ei mäleta, sest terve maikuu on suhteliselt udune, ilmselgelt. Kas Te kujutate ette, et ühel hetkel oled õnnelik, elu tundub kõik kenasti sujuvat ja aina paremaks minevat ja 1 minut hiljem kukub see kõik ühte suurte musta mitteteadmatuse auku? Ei ole hullemat tunnet kui see tunne, usu mind. Paljud inimesed arvavad, et nii kui vähiravi lõppeb, on see teekond läbi ja “elu läheb edasi.” Tegelikult see ikka päris nii ka ei ole, endisele vähihaigele ei muutu elu enam kunagi samaks nagu see varem oli. Iga pisem valu kuskil kehaosas (eriti seal, kus vähk oli) tundub nagu ilmselge vihje, et vähk on tagasi ja elu on läbi. Samas kui loogiliselt mõelda, siis me teame kõik, et see on tavaline, et kuskilt miskit valutab ja me (tõsiselt) ei mõtle, et meil kohe vähk on..aga endine vähihaige mõtleb, alati. See ei ole kerge, nii et ärge palun kunagi oletage, et kõik on OK.

Aga ok, läksin veidi teemast kõrvale.

Ahjaa, Canberra haigla. Kui ma õigesti mäletan, siis maikuu keskel kohtusin oma siinse hematoloogiga. Hästi armas ja humoorikas vanem meesterahvas. Mu lemmik arst 101%. Ma alguses ei osanud temast eriti midagi erilist arvata, aga nii pea kui ma talle oma “ajaloo” olin ära rääkinud, sellele mittemidagi vastamata hakkas rääkima lümfoomiga patsiendist, keda ta mõned aastad tagasi ravinud oli. Jutt oli umbes selline:

“See patsient lõpetas keemiaravi ja tema ravijärgne uuring oli puhas, ei mingit jälge vähist. Umbes pool aastat hiljem tehti uus uuring, mis näitas suurenenud aktiivust ja massi piirkonnas, kus vähk oli asunud. Ilma lisauuringuteta, uus keemiaravi sai alguse. Paar nädalat peale lisaravi lõppu tehti uus uuring ja see mass oli SUURENENUD. Arstid olid suht shokeeritud ja ei saanud aru, miks lümfoom ravile ei allu (sest lümfoom allub kergesti agressiivsele keemiaravile) ja otsustasid teha biopsia, et lõigata väike tükike antud massist ja analüüsida, et ehk on vähk “muutunud” mõneks teiseks tüübiks. Biopsia tulemused tulid tagasi ja antud massis polnud vähki, mitte mingit vähki. Antud mass oli lihtsalt ravijärgselt üles paistetanud.” — selle loo point on, et patsient sai lisaravi ilma mittemingi reaalse põhjusega – tema vähk polnud tagasi tulnud.

Nüüd Te ilmselt mõtlete, et miks ta mulle ja mina seda Teile räägin? Kui ma poleks teinud VÄGAGI palju kodust uurimistööd enne arsti juurde minemist, siis ma ei oleks olnud teadlik, et selle jutu põhjuseks on tüümus.

Kuigi ma ilmselt kirjutasin oma esimeses-teises postituses tüümusest, siis lihtsuse ja arusaamise mõttes kirjutan siia jälle. Tüümus on immuunsussüsteemi organ, mis asub keskrinnakus, südame ees ja kopsude vahel. Antud organ on vägagi oluline lapseas ja sel hetkel on tüümus suur, võtab kogu ruumi keskrinnakus. Täiskasvanueaks (peale 30ndat) on tüümus suuruselt vähenenud, tavaliselt maapähkli suurune, osadel inimestel täiesti kadunud, sest organismil ei ole teda enam vaja. Mõnikord harva (nt. suure stressi korral – nagu keemiaravi), tüümus aktiveerub ja “kasvab-paistetab” suureks, et abistada organismi immuunsuse taastamisel. Kõige tihemini juhtub tüümuse suurenemist lümfoomi ja leukeemiat põdevat noortel patsientidel 6-12 kuud peale ravi lõppu.

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Ma tean seda kõike, sest tegin tundide viisi uurimistööd peale oma uuringutulemustest kuulmist. Ma tahan olla nii “haritud” kui võimalik, et saaksin oma ravis ja edaspidises jälgimises olla teadlik ja kaasarääkiv. Iseenda advokaat.

Ilmselt nüüd sa saate aru, et miks mu hematoloog rääkis mulle oma kunagisest patsiendist tüümuse paistetusega. Kuigi me elame 21 sajandil suurepäraste meditsiinialaste arengutega, siis praegusel hetkel PET-KT uuringud ei suuda eristada paistetust aktiivsest vähist. Nii kurb kui see ka poleks. Arst ütles mulle, et ta on suhteliselt kindel, et see uus mass mu rinnakus on liigselt aktiivne tüümus, aga kuna ta ei saa 100% kindel olla, siis oleks parem teha uus kirurgiline biopsia. Olin nõus. Nädal hiljem kohtusin kirurgiga ja maikuu viimasel päeval tehti mulle Canberra haiglas VATS kirurgiline biopsia.

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Ma ei taha liiga palju detailidesse minna (kui huvi, siis saate Googeldada), aga põhimõtteliselt tehti mulle paremale küljele, rinna alla ribide vahele 3 sisselõiget, kustkohast pandi kaamera-tööriistad sisse, et keskrinnakus “ringi vaadata” ja  tükike analüüsimiseks võtta. Antud protseduuri käigus oli vajalik mu parem kops õhust tühjaks lasta, seega hetkel on mul suhteliselt pisikene kopsumaht ja pean veidi treenima, et normaalne kopsumaht tagasi saada. Selle tõttu olen hetkel kodusel ravil järgnevad 2 nädalat ja kahjuks pean olema kuuaega trennist eemal.

Operatsioonile järgneval päeval (viibisin haiglas 3 päeva) tuli kirurg mind vaatama ja ütles, et ta oli terves keskrinnakus ringi vaadanud ja ei näinud mittemidagi “koledat” ja kõik tundus suhteliselt normaalne olevat, va. paistetanud tüümus. Ta võttis tüümusest tüki analüüsimiseks ja see saadeti siis laborisse uuringutele. Kuigi seda oli rahustav kuulda kellegi suust, kes teeb operatsioone antud piirkonnale viimased 27 aastat igapäevaselt, olin ma ikkagi natukene hirmul, sest ainult laboriuuringud annavad 101% õige vastuse.

Eile hommikul ärkasin ma telefonikõne peale arsti kabinetist. Tema assistent ütles, et tulemused on käes ja arst soovib mind näha sama päeva pärastlõunal. Selline kiirustamine võib tähendada nii head kui halba, eks? Seega terve hommikupooliku olin täielik närvirull. Lõpuks kui me arsti juurde jõudsime, siis ta seisis ukse peal ja naeratas. Ma ei osanud sellele kuidagi reageerida ja küsisin lihtsalt, et kas võime sisse astuda? Jällegi ta alustas jutuga, et: “ta oli reedel Sydneys kui talle helistati laborist ja küsiti, et miks nad seda tüümuse tükki uurima peavad, et see on täiesti normaalne ja mida nad seal nägema peaksid?” See nagu ütles põhimõtteliselt vastuse: mu tüümus on üliaktiivne ja lihtsalt üles paistetanud! Ei mingit vähki – isegi see ülejääk, mis mul seal peale ravi lõppu oli, on täiesti kadunud. Mu keskrinnak näeb välja nii nagu peab (va. paistetanud tüümus)!

Eile oli mu elu parim päev. Palju parem kui see päev kui ma lõpetasin keemiaravi. Ei mingeid PET-KT uuringuid enam, edaspidi ainult vereproovid ja lühikesed arstivisiidid, et arutada kuidas mu enesetunne on ja elu läheb. Ma olen nii-nii-nii õnnelik!

Ja ongi kõik. Ma loodan, et te nautisite ja elasite kaasa sellele pikale postitusele. Aitäh, et võtsite aja, et lugeda. Aitäh, et olete mind viimase aasta vältel nii palju toetanud. Ma ei ole kindel, et millal ma jälle postitan. Ma ilmselt panen selle blogi puhkusele – ei tee enam uusi postitusi, aga jätan avalikuks, et tulevikus teised, kes selles jubedas olukorras, teavad-näevad, et nad ei ole ainukesed ja see ei ole lõpp, vaid ainult algus.

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Hello party people!

Seems like I’m not a very good blogger – a new blog post every blue moon, if even.  I feel like I created this blog to tell people about my cancer journey and as this “journey” is kind of finished for me now, I feel like there’s not much more to say anymore besides repeating all over again that I feel good, I am happier than ever and my energy levels are  jumping through the roof.

Now you are probably wondering … if everything is so good, why is she blogging again? As the title says – last month was the scariest month of my life. Easily more scary than the month when I was diagnosed with cancer. No, I haven’t gone crazy. I know you are all super curious now and want to know what the *** happened. So I’d advise you to go and make some coffee/tea, sit somewhere comfortable and relax as I have a long story to tell…

It all started in the beginning of May when I went for a regular 3-monthly follow-up with my haematologist in Sydney (after undergoing a PET/CT scan one week beforehand). As said, I feel really good and I think I’ve recovered really well, considering it’s been only ~6 months since I finished treatment. Naturally, I went to the appointment with a happy mood and a bit of an “annoyance” (it’s not very cool to sit in a car ~7 hours a day for a max. 30 minute appointment) and just wanted to get it done with to go and indulge on some yummy vegan fast food.

I stepped into the office, chit-chatted with the doctor a little bit until she got all super-serious and said that my latest scan wasn’t what she expected.

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I guess you can imagine how I felt at that moment, I think if I would have been standing up my legs would have felt like over-boiled spaghetti. All I was able to mumble out was “…it wasn’t…?” I remember looking at my partner and we both had this horrified look in our eyes. Obviously enough, I don’t remember very much of that appointment… all I was focusing on was not bursting into tears right there, right now. Luckily enough, my partner is slightly better  at absorbing information under pressure, and I still remember enough to know what was happening with me. She showed me past two scans (from January and May) and how something has “grown” and glows on the right side of the mediastinum (where thymus gland is located). Note: my original tumour was on the left side of the mediastinum. She seemed really concerned that I’m dealing with a relapse/recurrence and we need to follow it up ASAP. As I live in Canberra now and coming to Sydney every other day is not very reasonable, we decided to refer me to a haematologist in Canberra Hospital.

I’m not sure about the dates anymore – whole May has been a bit of a blur for me, understandably. Imagine going from being happy and getting back on track with your life to this big whole of uncertainty? Trust me, there’s nothing worse than that. Many people think that finishing cancer treatment is the “final step”, no it’s not. It’s just the beginning of continuous fear of relapse and uncertainty. Every little pain you have in your body – you automatically think that the cancer is back. Even though we all know that it’s perfectly normal to have a pain here or there once in a while… but for a person undergone cancer…not so easy. It takes many years (if ever) to overcome this fear. The fear of relapse. PLEASE – never assume that once the treatment is finished, the person is back to normal. It will never happen, you just have to adjust to the “new normal.”

But ok, let’s back to the important part…

I’m pretty certain it took around a week until I was able to meet with my new haematologist. Let me tell you, he is AMAZING, I adore him already. At first I wasn’t very sure about him as he seemed super slow at saying things, but I quickly realised that he is just very…considerate at what he is saying. Quite quickly into the meeting (after I’ve told him why I’m there and all the background into my medical condition, etc) without saying anything about my situation, he started telling me about a patient that he had a few years ago, I don’t remember exactly what he said, but it was something like that:

“This patient finished her treatment and  her post-treatment scan was clear. Around half a year later she had another scan, which showed increased activity in the “original tumour area”, which indicated a relapse, so we immediately started salvation chemotherapy. A few weeks after the treatment, another scan was taken and instead of decreasing, the tumour had GROWN. Doctors were shocked and thought that the salvation therapy is not working…prior starting another therapy, they decided to schedule a surgical biopsy to be able to analyse a tissue sample. The results came back as INFLAMMATION. This patient never had a relapse…it was just an inflammation in the area.” –> meaning that the person got unnecessary treatment, she didn’t even have a relapsed cancer.

You are probably thinking why am I telling you this story? If I hadn’t done A LOT of Google research after hearing my PET scan results, I would also be thinking “why is he telling me this.” The reason is – thymus gland. Majority of people have never heard of this organ nor know that it exists in their body. No, you are not being stupid, I also had no clue about it’s existence until I leant about my lymphoma diagnosis almost a year ago. Anyway, I’m the expert of thymus gland now, so to understand what’s going on I will try to also educate you a little bit, in a VERY simplified manner:

Thymus gland is an immune system organ that is mostly used during childhood until very early adulthood. For babies, this organ is massive – it takes up majority of their chest space. By adulthood, this organ has done it’s duty and is normally, the size of a peanut or doesn’t exist at all. In some specific instances (e.g. stressful situation, such as chemotherapy) when your body is unable to restore it’s full-immunity, thymus gland re-activates – becomes alive again – and grows bigger than it’s original size – a condition called thymic rebound/hyperplasia.

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According to various clinical studies, it is quite common for children/young adults (up until 30 years), much less common for older people. Most often it happens for patients with blood cancers (e.g. lymphoma and leukaemia) around 6-12 months post-chemotherapy. Strangely enough, overly active thymus gland post-chemotherapy is a GOOD indicator of increased survival rate – it presents something like a restart of the whole bodily system –> I know all this by doing HOURS of research into clinical studies/medical journals. I want to be as “educated” as I can so I can be the best advocate for myself.

I hope that now you understand why my doctor was telling me about his patient with a thymus “inflammation.” Although we live in the 21st century with amazing medical developments, until this day, unfortunately medical imaging is unable to separate inflammation from cancerous growth. Doctor told me that there’s very high likelihood that I’m dealing with a thymic rebound, he advised that we could wait another 6-8 weeks for a repeat PET scan OR organise a surgical biopsy within a week or so to see what’s actually happening in the area. We both thought that it’s better to “be safe and sorry”, avoid unnecessary anxiety and stress and was scheduled for an appointment with a cardiothoracic surgeon and a surgical biopsy (VATS) for the last day of May.

On the day of surgery, I was admitted at 6am already, though the surgery itself didn’t happen until 3pm. I underwent a surgery called VATS (video assisted  thoracoscopic surgery):

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– where three small incisions were made on the right side of my body next/under my boob through ribs to access mediastinum/thymus gland. The procedure itself took around 2 hours and I was admitted as an inpatient for the following two nights. Mmm, yummy hospital food? Needless to say, we ordered Indian food for dinner the night I was discharged.

Though the procedure was minimally invasive, I will still be sore for 2-3 weeks after the procedure and I’m not allowed to do exercise/any strenuous activity for a month. Mainly because my right lung was deflated and it takes time to restore it’s full capacity.

On the following day, the surgeon came to see me and told me that he looked around the whole mediastinum area and didn’t see anything “nasty” besides enlarged thymus gland. He said that they took a tissue sample for analysis, but based on what he saw (and ~20 years of work experience) he is confident that it’s just thymus “acting up.” Despite this, I still had a few days to wait for the “actual” results…and it could still be a relapsed cancer, right.

On Monday (yesterday), I received a call from the doctors office stating that he has received the results and want to see me in the early afternoon. You can’t imagine how horrified I was the whole morning, I was so nervous. When we arrived to the doctors office he was just standing at the door smiling at me, not saying anything. I didn’t know what to say or do. I just politely asked “can I come in now?” He explained to me how he received a call from the pathologist on Friday asking why do they need to analyse this tissue sample (as it’s just from a thymus)? That’s pretty much said it all. I am dealing with a rebellious THYMUS GLAND. No cancer, even the small scar tissue that I was supposed to have for life has disappeared! I’m healthy as ***! Yesterday was easily the BEST day of MY LIFE. I got my life back, I got my future back and I had my partner there with me, witnessing it.

You can’t imagine how happy I am. Honestly, I’m more happy now than I was when I finished treatment. It’s done, it’s finished. No more PET/CT scans for ‘false-positives”, just blood-tests and short doctor visits every 3 months to see how I’m going. I’m happy, happiest than I’ve ever been.

Before I finish, I want to say something. Thank someone. I want to thank my partner in crime – my boyfriend, who has ONCE again been a total super trooper. Though I don’t really like to “show off” the amazingness of my personal relationship on social media/Internet – I think that these things can and should stay between home walls, I feel like I need to say something to him in front of “everyone.” And also to show the importance of having a strong support group/person in your life while going through this horrible life changing experience. Here we go:

I’m so grateful to have him in my life. He has been on my side, supporting me throughout the whole ordeal since it started last May. He is always here for me and is treating me like a princess, despite me being a little *** sometimes. He is happy when I’m happy, he is strong, supportive and picks me up when I get down. You can’t imagine the respect I have for him, not just regards his approach towards me, but life in general.

The past year has made me realise the strength of our relationship and the love between us. Though I used to complain a little bit, in earlier times, e.g. when he didn’t bring me flowers for Valentine’s Day that he is not romantic and doesn’t love me (just kidding, of course), these things/acts are totally meaningless to me now. I’ve seen his endless love and dedication towards me through his other acts – acts, which no 26-year-old should do – sitting by my side EVERY single chemotherapy treatment, coming to EVERY single doctors visit, washing me when I’m too weak to do it myself (embarrassing enough, it has happened…), picks me up in the middle of busy restaurant when I almost faint and the list goes on… #thethingshedoesforme.

Of course there are many other people in my life that deserve similar salute, and I totally love and respect you for supporting me and being here for me always, but I think it was his time to be in the limelight.

Anyway, that’s it for now. I hope you enjoyed reading this VERY long blogpost. Thank you for taking the time. I’m not sure when is the next time I’ll post. Maybe I will put this blog to a rest, at least for a while – no more posts, but it’ll stay open for public, so anyone now/in the future dealing with similar issue(s) can learn that they are DEFINITELY not alone.

Xoxo.

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