I don't know where to start

I have a date for my surgery. It's finalized.  And it's a mere few days away.

Suddenly it feels like reality hit me. Originally I was just going for consultations, appointments, scans, blood draws, and nothing was certain. Nothing was because every cancer marker was normal. The last cancer marker has not come back, but a surgery date is scheduled. This, is for real. I now have a tangible date.

I would love to go into surgery without a care in the world, but I'm left wondering what my mum is going to do, the worry-wart that she is. Who is going to sit with her while she waits for me outside the operating theatre? What is she going to do for dinner that day? Who is caring for Zoe while I'm away? Are they going to be able to handle her because she can be precocious? Who is going to watch my stuff while I'm in the OT? I can't leave it lying around or trust anybody else with it. I also worry about having to be admitted for more than 24 hours before the procedure. I'm going to talk to the surgeon about it. I'm going to be bored senseless. If the op is in the afternoon, let me come really early in the morning, for Pete's sake!!

If I had my way - nobody will be with me overnight either. But plans have been hatching around me to stick someone with me overnight to "take care of me" because "it is the way it is done here in this country". Somebody has to be with me so they can do what? Hold my hand when I have to pee? (I think I will have a catheter for that) I should be a veteran by now but I still hate being in a hospital. I have stayed as long as one month before. Granted, my husband stayed over almost every night and brought me outside food. I am determined to do this stint as unassisted as possible. I hate to be fussed over. As long as I have my phone and iPad, I think I'm fine. I can keep myself occupied and concentrate on recuperating.

That said, it would be nice to have my mum to sit around with me for a while. I just don't want her to stress over me and I know she will. It will be uncomfortable for her to sit around the whole day, to say the least. And, she will be bored as well. 

I know they all mean well, but I just want some peace of mind knowing that Zoe will be looked after and that I won't be hearing complaints about her later. Find a way to resolve problems without my assistance or knowledge. I just want to see her smiling at me later. For that matter, I want to see everyone smiling at me later. 

Whether this is cancer or not.

So I jumped the gun but here's the news.

Unknowingly, I jumped the gun. It turns out I am not having surgery. Not yet, anyway.

I saw my surgeon today. He is a gynae oncologist specialising in more complicated surgeries. He is highly regarded in his field and I was referred to him by my mum's classmate who is also a leading gynaecologist in Malaysia. Dr Aziz Yahya is a kind and gentle man who has no airs about him at all. He's warm and approachable, and a straight shooter without being crass like some doctors can be.

My meeting with him didn't change the solution or necessarily the approach towards my surgery. Even though Dr Aziz is skilled in performing surgery robotically (which is his preferred method), it cannot be used on me. My pelvic cyst has a semi-liquid portion and what looks like a solid mass to it. It must be removed intact. They still need to open me up to ascertain if there is cancer.

However, there is a particular cancer test specific to ovarian cancer called OVPLEX that is 95% accurate in determining if I am at high or low risk for cancer.  More information can be seen here: http://www.ovplex.com.au/aboutovplex.aspx

This multimarker bloodtest for ovarian cancer costs RM900.00 (USD 300) just because Malaysia doesn't have a lab to test for it. I believe it has to do with some licensing issues. Testing has to be done in Singapore so my blood has to be couriered to Singapore for analysis. Furthermore, they need 10 days to get the results back.  As a result, I have earned myself a reprieve. I cannot be in surgery till after the results are back because it determines how Dr Aziz will open me up.

If it is found that I have high risk for cancer, a vertical incision will be made and lots of parts of me will be gone. Lymph nodes, omentum, ovaries, the lot. If I am at low risk, then he will open me transversely, then upon removal of the cyst, he will determine if it is suspicious for cancer. If it looks like I have it, then a frozen section of the cyst will be ordered while I am still on the table and sedated. They need 30 mins to figure it out. If cancer is found, I will still lose the lot and a bigger incision is necessary to remove it all.

There was a lot more to our meeting which lasted almost an hour. I felt really comfortable with Dr Aziz and he explained things precisely and clearly to me. It is the standard to have people stay in the hospital for 4 days following surgery. I was already negotiating to get out earlier if possible, and it was met with a slightly raised eyebrow with a little smile attached. We don't want people to stay in the hospital if it isn't necessary. Or something to that effect. Let's hope I'm out early. But I don't think surgery will happen any time earlier than July 4th, honestly.

My thoughts immediately go to Pulau Perhentian. The doctor said swimming is good. Even snorkelling is good. But then I thought about my mother. She would have a cow if I even mention that I want to steal a day to go to my beloved island. It is a risk. Dr Aziz approved it, with a reminder, as long as you don't do anything too robust! I actually immediately shot it down as I was saying it, but I also really do want to go. I really really want to...even for just a day and a night.

My appointment with the doctor ended on a good note. I left feeling that I was in good hands. I am ready. But as soon as I got in the car with my brother who had taken half a day to be with me, I got on the phone to Shelly and told her the news about the surgery and when it would be. Can you read my mind now? Do you know what I'm going to ask you next?  She laughed her hearty laugh and I was filled with anticipation. She's going to say let's do it!  I'll see what I can do, I'll let you know by Sunday. I have to check my schedule.

So I'm left wondering...do I get to go? I have 10 days or so to do what I want before I'll be left at a diminished capacity and probably mostly in bed for the following weeks. I will even miss Wimbledon because I will probably be in hospital during that time. Hmmm... And yes, I am selfish. I want to be able to do this.

I5 mins to write

I shall allow myself  not more than 15 mins to leave these thoughts before I head out to see the surgeon tomorrow in KL because it is late and I have to be up to catch a flight in -oh -5 hours!

I leave with a light and heavy heart -

I feel like I have a pretty good attitude towards this whole thing. I have an upcoming surgery that is certain. What is discovered is uncertain. But what happens happens. I can't change that. Nobody can. I don't believe in God, so nobody can save me. I'm a realist. I am not worried or depressed. I just want to bloody fix things!! Everything else is not in my hands. I can only be happy and have a good attitude and that's the best I can do. I hope that whatever it is in my pelvis is fixable. And if I do have cancer, it is treatable.

Look at James Gandolfini today. He didn't anticipate his end was nigh. Nobody could have. Life is like that. I accept it. It could be this our that that takes you away from everything and everybody.

I am lucky because I have parents, husband, daughter and an amazing brother who love me and unconditionally at that. My family has lent their support, my friends - new and old - have stood by me, and wished me luck. Most of you who know me don't give me "false hope" and say everything will be fine. And those of you who have said that - I know you mean you hope the best for me. And I appreciate it all the same. Love and hugs to all! Massive love and hugs.

To those of you who have heard me speak endlessly about the ups and downs...I hope you don't mind! I talked to you a lot because you listen well. I might have bored you but you were there for me. And I thank you! Those who have heard me briefly, just know that I didn't want to rehash things over and over for everyone. If you read me here, you'll know what I mean.

The heavy heart of course is if things go wrong - my dear Zoe: Mummy's favorite girl. Forever! I hope you always keep a good attitude and remain strong no matter what. Life goes on. There's many things that I haven't had a chance to teach you but I know you are in good hands with Daddy and everyone in Malaysia. Love love love!! Big love!! Remember to treat your family and friends well, and with respect, at all times.

I'm not a fatalist, don't think that at all. But I don't want to leave important things unsaid. Going forward, I'm not sure if I have the heart to add to this, but I more than likely will. I am always looking up and always smiling..

Yours,
Gigi xoxo

PET/CT Scan - what was my experience today?

My family doctor wants to be thorough about things so I was told to go to this place in Bangsar on Jalan Maarof - called Austral-Euro Diagnosis to get a PET/CT Scan to see if there is cancer. Even though cancer markers were taken, only 2 were obtained, not the usual 4. So this scan is supposed to see everything?  Really??

I get there 8am in the morning, I'm early. There's already 3 or 4 patients in front of me. They register me, get an IV catheter going and get a brief medical history while they are at it. I am then ushered into a tiny room with a comfortable chair and a place where I can put my clothes. I am given 1.5 litres of water to drink. In the meantime they push some clear radioactive dye I suppose in me through the IV. I'm to undress and just wear my underwear and a robe. All my accessories are off - earrings, rings, and phone!!  I'm left alone in that tiny closed room with a ventilator to contemplate what the scan's going to show and to drink my water. Not my idea of fun. And that took a long time. The mind wanders you know?

After that, I'm told to pee several times to get as much liquid out of me as possible so my bladder is not full of water and they have to scan me again. They shuffle the patients from comfy chair to comfy chair in a waiting area outside the scanner room to indicate your turn. The closest chair to the scanner room is up next. Musical chairs. Fun? No. A better way of doing things should happen here.

Everybody sitting out in the waiting area is really almost naked under the robes, and the robes are pretty short. I don't really fancy looking at these fellas who are out there with me. And thankfully everyone has the decency to just close their eyes and think about what's ahead.

I am quite claustrophobic so that was my biggest concern. Turns out the machine is not really that bad. It is open on both sides and they shuffle you back and forth so you are never quite covered all the way, nor do you feel like you're entering a closed tunnel. The attendant tried to strap me in and I told her, Look, I am claustrophobic so please don't do that! So she makes sure that I will hold myself  on that little tray they slide in and out of the covered area, and not fall off. Arms over my head and off I go. There's a little sticker that reads Laser Beam, do not look directly into it.  Or something to that effect. I just close my eyes and try not to fall off. The whole scan takes barely 15-20 mins. I almost fell asleep!

After I came out of the scanner room, I promptly got dressed and waited outside to hear my results. The procedure was as simple as that.

As to whether my results were good - No. I didn't hear what I wanted to hear - which is that everything was clear. I was told that I have something that looks like cancer in my pelvic area but that it was not clear - 50-50 chance, the doctor said. And that he was almost 100% sure I had nose cancer, and that it needed to be treated with radiotherapy and chemotherapy immediately. But it is very treatable, he added.

THUD?!!

My brother was waiting outside. Prior to the scan, I'd told him - Don't freak out, no matter what the results are. Or I will as well. He did well composing himself. He didn't freak out. I didn't freak out. I was stunned. And then I started making calls and sending texts. I told people I had it. Because who says nearly 100% sure if they don't know? And a PET/CT scan is supposed to be the be-all and end-all that shows you every goddamn thing. I told people - I'm not afraid. Whatever it is, I will deal with it. Let's fix it. In my head, logistics of how things were going to happen just weighed me down. I should go back to America. I shouldn't. What?! I need to get it done soon...blah blah...all in my head - I was hashing this out.

 

I thought about Zoe. Even in moments of weakness like these, I shan't be weak. But I couldn't help feeling that I was fighting Goliath. I kept thinking about Zoe. I made my husband promise me that he will always keep the connection with my family if I weren't here. I was thinking all the things that were worse case scenario. It would be foolish for me not to. Yeah it is good to be positive, like I always strive to be. But I still have to think for Zoe, if for nobody else. What happens to her without me in the picture?

I felt so lucky that I had my brother with me. It wasn't a planned thing for him to be with me. He had work to do today. But he chose to come and it was a great comfort to me. Truly. And I'm not just writing for him to see either because I know he reads me here. It was just having someone there to help maybe take it in alongside me. And to drive me away from this place! ASAP!

No matter what, don't anybody give me false hope. Some have said, everything will be OK. No...how do you even know that? You can't say that. So don't say that. I like it upfront and honest. Don't promise me something that can't be given. I'm a realist and I don't live in la la land!  I almost have to laugh despite the dire news. Just so people realise how ridiculous they sound.

To be continued.