2^nd update on AVN diagnosis

The AVN was progressing very quickly just in the matter of days. If before I only had pain on my hips if I’m squatting or whenever I tried to rise my thighs, now walking and even when not doing anything caused so much pain. My attitude was like… please I want to start the treatment soon so this pain can stop. But in the other hands I don’t want another side effects or complications I’m sick of chasing the symptoms. I don’t want the treatments become another source of the sickness. Hence I want to get a consult first from my oncologist, I believe she can make right decision considering the HBOT is pretty much close to her expertise (pulmonary oncology) which is (still) I think somehow lung related.

So I meet her Monday (orthopedic surgeon confirm the diagnosis last Friday), at first I was so worried that if she did not approve this treatment but eventually I get an approval. She asked if this was caused by chemo or something else, she was quite surprise when I told her that this is steroid induced. She said this is rarely happened considering I was on steroid in less than a year. But yeah things happen, I don’t want to think too much on the cause I want to just focus on the solution. I want to get better. My onco said theoretically the HBOT is make sense that the pure oxygen acquired in hyperbaric environment can supply to necrotic tissue up to molecular level.  But there was a long pause, I asked if this about my lung condition? Nope, actually my lung is okay says her. Is just she never had experience using HBOT as a modality for cancer (or its complication), which I understand. I thought she must be little bit cautious considering the lack of experience I think she might thinking if the HBOT would be a contradiction to my cancer history. The way he think is like a scientist (she have a PhD degree tough), no previous experience with other patients plus maybe she haven’t read any medical journal about this. I recall during chemo I ask if I can have an acupuncture session to ease the side effects, she said no because concern of it will interfere the efficacy of the chemo. But for this one I pretty sure it safe after I studied in journals and medical articles. At the meeting eventually she said “Okay let’s try HBOT”. And I was relived.  

1^st update on AVN diagnosis

Hidup di kota besar dengan akses mudah ke fasilitas kesehatan dan ahli medis adalah berkah yang kadang dilupakan bahkan kadang tidak disukuri oleh masyarakat Jakarta. Karena lahir dan besar di provinsi dan tahu akan seperti apa perbedaannya jika di Padang saya sangat bersyukur. So dalam satu hari itu saya selesai ambil darah (ureum dan creatinine) sebagai syarat CT scan contrast, lalu lanjut dengan CT scan nya itu sendiri. Sebenarnya hasil MRI minggu lalu sudah bisa diambil sih, tapi karena I just don’t want to add more stress in my mind before and during the CT scan so .. yeah I want to be mentally prepared aja sih waktu lit hasil MRI nya. I’m ready for any bad diagnosis.

Took more or less around one hour to comprehend the result, but basically there are couple issues: 1) Bone thinning (in both femur) 2. Bone necrosis in femoral heads and the body of the femur, the radiologist did not explain further how bad or how severe but (I guess the orthopedic surgeon have to see the image by himself to do the staging) 3. And the third is I think minor issue, some kind of inflammation in joint (or both joint) of the femoral heads.

Dapat laporan MRI nya sekitar jam 1 siang, dari Siloam saya tinggal nyebrang saja ke RS Jakarta tempat dokter Muki berpraktek. See lagi-lagi kemudahan yang dikasih Tuhan, sesuatu yang harusnya selalu saya sukuri. Daftar di respsi lalu dapat info dari suster di poli spesialis kalau siang itu dr. Muki gak terima pasien lagi karena sudah ada pasien lain yg ready di ruangan operasi. Sempat ngotot sama susternya dengan alasan “sus saya Cuma mau kasih lihat hasil MRI aja kok sama dokter” tapi suster bilang kalau pasien yg mau di operasi sudah dibius jadi saya urung untuk usaha yg lebih ngotot lagi. Gawat juga kalau ini pasien udah kebangun duluan dari bius karena kelamaan nunggu dokter. Okelah, so harus memendam rasa penasaran sampai jam 5 karena dokter Muki baru akan mulai ketemu pasien lagi jam segitu.

Finally I meet the orthopedic surgeon, the meeting was a real quick after reading the MRI report, so it is official that I have AVN. He didn’t seems to be worry at all he calmly said that I have to be patient because and strong for the diagnosis. Thankfully the condition is in early stage so no surgery or advance intervention needed at the moment, he gave me supplements for bone and joints), Ardium to pull the blood to the necrotic bones and the most important treatment: HBOT. I will start this treatment ASAP.

Need a (very long) break

Looks like will not gonna get another break for the upcoming months if my diagnosis come back positive with avascular osteonecrosis (AVN). Yep, that is the news. It is not confirmed yet because I was just having a pelvis MRI yesterday, hopefully next Tuesday I can already bring the result to my pulmonary oncologist (which is currently already acting like my primary doctor huff ). I’m quite sure that AVN will be the comeback positive because it fit will all symptoms and my back medical background aside from this I’ve seen two different orthopedic surgeons both of them suspected me with this condition.

My current attitude is pretty much like the first time I’m dealing with my cancer diagnosis, again I’m feeling that roller coaster emotions during the past doc appointments, taking pain killers, scans and some blood works. It is like a déjà vu, these process brings me back to the memory of one year ago. The first reactions when I first suspected myself I was scared to death, lots of horrible thoughts in my mind. After researching after researching about the condition (that I’ve suspected), seeing second opinions from other orthopedic surgeon from other hospitals and waiting for MRI my attitude was just like: Okay tell me what it is and let’s work on it.

MRI result will come back next Tuesday, on that same day I will also have my six monthly thorax CT evaluation (hopping for clear scan result, so I will continue with annual scan only for surveillance), I will meet my pulmonary oncologist (doctor Sita) because the BPJS can’t schedule earlier then I will see doctor Muki in different hospital (which is luckily just across the street of Siloam cancer center). Good thing to see my tom see my pulmo first because I could discuss what are the possible treatment options from her perspective (given she is my primary doctor), any concerns given my seminoma history and soon. From my first appointment with doctor Muki if it confirm AVN in this early stage he would think about the hyperbaric oxygen therapy, this mean I will also have to ask doctor’s Sita’s approval. I really don’t want the treatments for one condition caused another sickness for my bod, I don’t want another side effects. I’m sick and tired of being sick and tired, can't they just give me a long break, a very long break from therapies, meds, doc appointments, scans and everything? A very long break please. 

Thankful for the Fight

Thankful for the Fight

Cannon

It’s been a month since my last update… hah I’m okay. First thing first, I’m soooo very grateful my PET CT result came back negative. It is all clear the remaining of the tumor are very small and a metabolic meaning this remaining is a scar or a dead tissue. Dr. Arif one of team member of oncology pulmonology in Siloam when I was hospitalized this January once said hopefully now it only left the empty shell, it also supported by my radiation oncologist… because the tumor was not removed by surgery (only chemo and radiation) so it is okay if the tumor still have little remaining as long as it not glowing in during PET scan.

Some guys from testicular cancer forum TC-NET also shared their stories about their mediastinal tumor, the radiation and chemo did a good job to get rid most part of that little fucker but it was not completely make them gone away. One guys said the remaining was keep shrinking till not much left after several years. This forum is a real blessing form me the guys and (some lady) are very responsive. They would answer ANY questions very detail one guy even send me e read receipt “hey see your email in the forum, I’m in the middle of something but I will reply once I get home” that is really nice and kind and comforting in the middle of panic and confuse especially during your diagnosis what you really need is a support to give you detail and reliable information, advise and to hear (or read) stories from someone like me gives huge amount of positive energy.  

Now what? The monster is gone, I kicked it out. I’m not gonna let it interfere my life, I do have some scars from my battle last year pneumonitis, mild depression, seborrheic dermatitis and back pain for now let these be the reminder for my battle. I’m thankful because I’m survive but I even more grateful because I have a change to fight this little fucker. I heard someone (a survivor) said “after remission keeping cancer away is my full time job” other survivor’s caregiver I meet last year during chemo once told me “after remission always be cautious… be grateful for the fight but don’t lose control by not taking care of your diet and not exercising because the cancer is can coming back we just don’t know when”. This is very true, I heard in forum someone get a relapse after 14 years of remission… can you believe that without the lifestyle changing, with all the crap he put in his mouth he still mage to be cancer free for 14 freakin years. My goal: I want to be healthier, even healthier than before I get cancer.

PS: handsome young man in the picture is not me nor my kid :), his name is Cannon he is my inspiration more story about him click here or here

Rabu, 1 Juni 2016

 

Nunggu giliran masuk ruangan scan (playlist kece)

Obatnya masuk

It was like de javu aja pas didorong dengan kursi roda ke bagian kedokteran nuklir tempat PET scan, perut gw langsung melilit.. tiba-tiba keram, perasaan gak enak. Ada dua orang ibu yg juga lagi ngantri scan, yg satu kena kanker usus yg satu nya lagi (kebetulan juga seorang dokter) kena thyroid dan kanker tulang (tulang kepala). We were dengan semangatnya saling cerita tentang diagnosa dan treatment kami masing-masing, saling lempar dark humor.. typical cancer patients’ lah lol but somehow it feels very comforting J

God I’m scared as hell, I’m praying and praying for the good result… no more cancer please no more drugs no more pain please God. Come on Prabu be brave, better to see and evaluate the treatments good or bad just face it and move on. Jadi inget kata-kata salah satu Ibu diruang tunggu PET scan “semakin dekat gw dengan Tuhan, semakin belajar agama .. gw mualaf btw ….semakin dikasih cobaan sama Tuhan” kata ibu itu, trus gw mikir mungkin itulah ya, biar kita semua harus selalu berbuat baik ya… apalagi yg bakalan diinget sama orang selama di dunia ini selain kebaikan yg kita bikin.

Okeh, I’m ready to see the result on Monday diruangan  dokter Sita,  whatever it is I’m ready to “pass this phase and move on”
 

Selasa, 31 May 2016

Jam 11 masuk Silioam, proses masuk ditangani oleh intern yang lamaaaaaa bgt, mbaknya berkali-kali bikin kesalahan dalam input data dan ulis berbagai form untuk proses masuk gw. Haduuuh cuma bisa mengusap dada montok ini. Akhirnya selesai, diperiksa lagi di UGD sama satu perawat cowo yg langsung mengenali wajah gw. “Ini pak Prabu yg biasa (kemo) di lantai 30 kan?” Amit-amit mas gak mau kemo-kemoan lagi, kata gw dalam hati.  Padahal baru dua kali ketemu deh tapi langsung inget, nama gw apa ini para perawat di rs pada ngecekin sosial media pasien ya , sampe segitu apal sama nama pasien. Bruder ini gw gak inget, tapi denger-denger gossip antara mama  gw dan Suster May waktu kemo dulu doi married dan cari  tantangan baru jadi perawa di UGD. Timbang badan (97kg fu*k) dan ukur tinggi  (175cm), ukur tensi dan suhu badan ditanya-tanya dikit tentang kondisi kesehatan sekarang akhirnya masuk dianter sama mas-mas yg bias ngaterin waktu kemo dulu.

Rasanya aneh dan kayak… kaya gak enak gitu, mengingatkan lagi masa-masa kemo dulu huff…  pas nyampe lt  30 gak ada suster-suster  yg  gw kenal lagi nih.. mana Pariah, May, Vera, br. Herman dll ?  banyakan susternya baru tapi tetap baik-baik , yg paling gw sukai selama dirawat adalah perawat-perawat gw  … doain masuk sorga deh kalian semua, kalau gak ada perawat-perawat ramah ini haduh tambah stress deh kali gw selama kemo dan sakit .

Miss Chandra's visit

Sore harinya dapat kunjungan dari the one and only Ms. Selvia Chandra … biarpun mulutnya monyong dan pernah operasi kelamin dua kali di Thailand tapi dia sahabat baik gw. Kantor doi deket sini jadi dia bareng Shera tinggal jalan doang dari kantor, lumayan ngobrol-ngobrol sama dua makhluk ini ngilangin suntuk dan cemas gw.

Lagi asik-asik ngobrol sama Via disamperin sama br. Herman, mas Herman nya langsung nyalamin gw… kayaknya hepi banget ketemu gw lagi. Bah gw juga hepi ketemu sama kalian lagi tapi engga disini, engga di rumah sakit, di mall kek sambil ngupi-ngupi kek huaa.. pengen benar-benar sembuh J

Senin, 30 May 2016

Check up bulananan dokter Sita bilang hasilnya jauh lebih bagus daripada pertamuan terakhir dibulan lalu, bahkan awalnya dokter mau stop Erythromycin dan N-Acetylcysteine (NAC) karena kondisi sudah jauh membaik, tapi gw tau kalau NAC adalah antioksidan dan suplemen yg bagus banget buat liver detox dan fungsi paru gw tetap minta dr. Sira buat resepin NAC, lagian masih ditanggung asuransi ini kok.

Nyeri punggung sambal tulang punggung dan tengkuk gw di pencet-pencet sama dia ini menurut dr. Sita disebabkan kenaikan BB yang drastis selama kemo sehingga membuat tumpuan tulang belakang jadi lebih berat, dan mempengaruhi syaraf dipungung. Kalau gw pikir make sense juga sih dari 85 kg melejit ke 97 kg God 12 kilo lebih naiknya sekarang sih udah turun ke 92 kg tapi masih jauh dari normal menurut salah satu perawat di ruang perawatan lantai 30. Untuk ini dokter sarankan MRI buat liat kondisi syarafnya, apakah ada syaraf terjepit atau gimana.

At the end of the session dokter sarankan untuk PET CT lagi untuk evaluasi soalnya sudah lebih dari 6 bulan setelah kemo dan radiasi. Sebenarnya gw rada males, well rada takut sih sebenarnya… takut liat hasilnya. Takut kalau ada apa-apa lagi, “oh PET lagi ya dok, buat apa ya? Kemarenkan pada saat diagnosis pertama kali gak ada metastasis kan ya dok.. trus buat apa di PET lagi?” Sebenarnya udah expect jawaban standar dari dokter sih, dan bener dong dokter jawabnya sekilas aja “Ya buat evaluasi aja, liat apa ada ‘sesuatu’ yg lain kan ini udah 6 bulan daris setelah kemo”. Ya sudahlah brave yourself Prabu, kok masih cemas ya gw huhu.. trus dokter bilang mudah-mudahan gak ada sesuatu yg mengkhawatirkan ya, soalnya CT contrast udah bersih.

So dokter buat kan surat pengantar rawat buat besok, karena asuransi dari kantor hanya bisa cover pemeriksaannya kalau dirawat inap, bisa juga sih kalau pake asuransi yg satu lagi tapi harus reimburse dulu lha males banget 9 juta baru diganti bulan depan.