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.