Just kidding, it actually IS cancer.

Let’s not beat around the bush, ok?  My life is absolutely crazy.  

 

Pre-surgery! #byebyeoscar #ovaryfarewelltour

The last time I wrote, I was just about to have surgery to have my left Ovary (Oscar) and Fallopian tube removed, due to a large tumor that was found via ultrasound and MRI (see previous entry here for details on Oscar the Ovary). The surgery went splendidly (not that I remember any of it as I was passed out drooling on the surgical table) and the surgeon assured us it was quite textbook.  I awoke in recovery feeling super sore and groggy, while they pumped me full of happy drugs.  I wasn’t in nearly as much pain as I anticipated, and being that I was massively worried that I was, indeed, a GIANT baby and super wussy about pain, I was relieved.  Joe came in and explained that the Doc had to run into another surgery, but that the surgery went well, though the tumor was much larger than they initially thought. He held up his hands to demonstrate its giant Oscar-y size, and compared it to the size of a “deflated football” (cue Tom Brady pun).  No wonder I was so damn bloated.  Oscar was playing a freaking football game in there.  Asshole.

The surgeon had performed a frozen biopsy during surgery to assess if the

Post-surgery. All smiles because of glorious pain meds.

mass was cancerous or not.  The biopsy came back benign and Joe and I were both happy and relieved.  The nurses got me sitting up and more alert and ready to head home.  They put me in some giant diaper-looking shorts (yeah…watch out fellas, purrrrrrrrr) and wheeled me down to the car. The first night was actually probably the easiest.  I was totally doped up on Oxy and Percocet, and drifted into a dark, dreamless sleep, wondering why they didn’t send me home with pictures of Oscar.  I mean, it’s not like I wanted to display him in a jar on my mantle…but I wanted to at least see what the bastard looked like.  

The next few days were a little tougher, but all in all, a super easy recovery. Many people warned me that recovery would be super hard, but it was surprisingly very simple.  I’d cooked up a storm the week prior, so I had healthy food just waiting to be heated for me.  Joe took the week off to help take care of me, and we played cards and games and watched ALOT of Netflix.  I had all of these dreams and visions of writing and taking online sign language classes and instead I stayed in bed, propped up on pillows watching Switched at Birth (I have a thing for wholesome family dramas…again, don’t judge me).  The 3rd and 4th days I hobbled around a little more, even going for a walk around the block after dinner.  The worst part was being bed-ridden.  I don’t do so well with that.  I am an active person and being in bed for several days was painfully boring.  The

My lil sis came over to play games with me. She had her beer, I had mah pain meds. 🙂

pain meds were funny.  For some reason, they really wouldn’t “hit” me until I ate some food. Then…WHAM!  I was high as a little Katie kite.  It was quite fun from what I can recall.  I remember trying to write a blog one night and thinking that I had never been funnier, had never been wittier, and when I read it (soberly) the next day, I died laughing.  And not because of my amazing wit. Because it was like a drunk 7 year old with a learning disability had written it.

By the 5th day I had started to ween myself off pain meds (they’re extremely bad for motility and thus, bad for SIBO…and I did NOT go through all of this shit this year to bring SIBO back in just 5 days). I was still taking them at night, when my pain was at its worst (from moving around all day).  My incisions were gross: 1 on each side and 1 raw, disgusting belly button, and my belly puffy and swollen, but I applied comfrey cream each night and did a castor oil pack for inflammation every day as well.  I also took curcumin, which is supposed to help with tissue regeneration and swelling (good to know if you have any kind of surgical procedure looming!). Anyway, on the 5th night, I had my first venture out into the world again. Joe came home and I was so chatty and irritating he told me that I desperately needed to get out of the house.  He announced we were going to PetSmart. “Sweet!  Let me just pop my pain med real quick!”  We went to PetSmart to pick up litter and kitty food, when…lo and behold, I saw it.  A

I mean. Best. Thing. EVER.

green, sequined, mermaid kitty costume. “OHHHHHMYGOD!” I exclaimed. “PUHHHLEASE can we get this? PUHLEASE?!?!”  Yes, I was on drugs.  Joe looked doubtful.  “Don’t make me play the surgery card,” I warned. Joe laughed and said, “You’re high and she will hate that.”  To which I replied, “But this green color will really pop against her fur!”  Joe raised his eyebrows.  “Enough Project Runway for you, babe.”  We bought the amazingness and I got many hours of joy out of it.  TOTALLY worth $6.99, kids. Every damn penny.  

I improved more and more every day and walked just a little bit further every day as well.  The first time I walked 2 miles (7 days after surgery) I was so proud!  It’s a funny thing to go from distance running to slowly walking 2 miles.  One thing I noticed right away is that the huge lower bloating was

Crazy before and after Oscar extraction!

mostly just…GONE. My baby belly had vanished!  It was that F#&$ING Oscar all along (since clearing SIBO, anyway). That rat bastard.  Here I am, taking every supplement known to man and agonizing over which food is causing this swelling and WHY OH WHY is the bloat not gone now that SIBO is gone?!?!?! and all of this time it was a freaking tumor.  Of course.  Because that is just how my life has decided to go.  😛

Two weeks go by and I’m feeling better and better and walking every day. I’m cooking again and healing and feeling super optimistic-and-rosy-sunshin-y that my health woes are slowly starting to sort themselves out.  I’ve worked hard, I’ve remained diligent, and now I will be rewarded with better health, right? Hahahahahaha ohhhhh dear little optimistic idiot…nope!

I go to see my doctor for my two-week post-surgical follow-up.  I feel I should note that I had to wait over 2 hours to see him.  I good-naturedly really didn’t even mind waiting.  I had my book, and I kept telling myself, “This wait is a good sign.  It means your doctor is taking time to sit and talk with patients and answer their questions thoroughly.”  I even posted on facebook about it, assuring myself that if I was patient, it would come back to me in a good way.  But again, nope!  The good-natured moron strikes again!  

I’m shuffled into an exam room where I wait another 20 minutes.  The oncologist swoops in, very quickly checks my incisions, states that I am healing at a “speed-of-light” rate (das’ right doc, over achiever right cheeere) and then drops a big ole bomb.  Allow me to properly set the stage…

***DOC WOOSHES IN***

DOC: Aloha!  How are we feeling?
ME: Good!  The recovery has been very easy, no real troubles.  My incisions are healing nicely.  
DOC: (inspects my incisions) Wow, those are healing super fast!  It seems you are healing at a speed-of-light rate!  Well, as it happens, it’s a super good thing we took out the tumor, as it turns out it was a Granulosa Cell Carcinoma.  So it’s lucky you made the decision to take out the entire ovary and fallopian tube, because…

ME: Um hold UP a sec. (I blink at him for a moment).  Carcinoma?  Are…are you saying that I have cancer?
DOC: Yes.  Well (clears throat) I’m saying that I think you did  have cancer, but I’m optimistic that we got it out.  
ME: Um. Uhhhhh, ok.  But you told me after surgery that the tumor was benign?  
DOC: Yes, the frozen biosy we did in the middle of surgery came back negative, but we also send samples out to other labs that do a more thorough analysis.  This is when we found that it was, indeed, a carcinoma.  
Your tumor was very large and it’s likely it was highly estrogen-producing, which is why I think you haven’t had a menstrual cycle in 15 months.  I think that now the tumor has been removed, your cycle will continue.  I will see you in three weeks.  If you haven’t had a period by then, we will take further steps.
ME:  Further steps?
DOC: Yes.  If you haven’t, we will need to do another ultrasound and perhaps a biospy because this particular cancer has a tendency to spread to endometrial cancer, so we will want to closely monitor that.  
ME: Ummmmm, errrrrrrr, ok then. What about the right ovary?  Should we be concerned at all that it has cysts as well?  
DOC: (smiles like a f*cking maniac) No.  Not at this point.  We’ll keep an eye on it but there is no need for concern.  You still have PCOS and are likely to always have cysts.  Ok, sound good?  I’ll see you in three weeks!  
ME:  Er, Ok.  Thanks doc! (I chirped this out like a complete idiot…like the man did not just tell me I have cancer and then try to shove me out the door not-so-subtely).
DOC: No problem at all.  See you soon!  *Exits

I walked out the door, wondering numbly what had just happened. Once I got down to the street to walk home, I began thinking, “WTF is wrong with me? Why didn’t I ask questions?  WTF is wrong with him, oh-so-casually mentioning I have (had) cancer?!?!  Why didn’t he give me even 30 seconds to just absorb the information and gather myself so I could ask questions?”  I promptly called my husband and couldn’t answer any of his very valid questions.  I felt like the moron of the century.  I immediately texted my ND, who I’ve seen so often through this health storm that I swear we’re becoming actual friends, and she replied immediately, “Oh wow.  Ok.  Give me 24 hours to do some hard core research and I’ll see you on Thursday.  Don’t stress, we’ll make a gameplan together and I’ll consult with your oncologist and get more information.”  I was thankful and relieved.  I assumed she would get more info outta him than I would.  

So, cancer.  CANCER?!?!?!  Really universe?  I mean for serious?!?!?!?  

I didn’t exactly freak out for some reason.  Maybe it was the way the doc so cheerfully delivered the news that something creepy had been growing inside my body, but I was ok.  I think he was probably just trying to manage my reaction.  I wish I had had the forethought to say, “Look man, I’m not a really reactive person.  I’m not going to freak out, or sob, I just need you to give me a minute to process this and to answer my questions.”  But really, if ever there WERE a time to freak, it would be when the C-bomb is dropped like it’s hot. However, I just sat there like a damn deer in headlights that has cancer.  

I got home and called two of my sisters in a conference call.  The first thing my oldest sister said was, “Whoa.  WTF?  Well, I just want you to know…I will NOT be shaving my head in solidarity.”  Hahahahahahaha.  They’re assholes. But they’re funny assholes.  They made me laugh.  And yes, sister, if it ever came to that, you WOULD be shaving your f*cking head in solidarity. Because I will get you hammered on wine, wait until you pass out, and then sneak into your bedroom and shave your damn head.  You bettah believe it.  

I did a little research on Granulosa Cell Carcinoma, but I had to limit it because I knew so little.  I had no idea what stage I was in, how large the tumor was in size exactly, and I wondered how thorough the surgeon had been.  He had told me many times that he was doubtful it was cancer, so the thought kept coming up: you don’t find what you’re not looking for.  How sure was he that he had “gotten it all?”  

I went to meet my trusty ND a few days later.  She was great as always.  She had printed out several articles for me and was armed with info.  She had gotten the biopsy report and surgeon’s notes and though she hadn’t been able to speak to the surgeon directly yet, she said she would hunt him down and talk to him.  In the meantime, I had made another appointment with another oncologist/gynocologist for a 2nd opinion.  A gyno friend in Honolulu had given me the name of another person she trusted (and also actually assured me that my original surgeon was the best on island, so while his bedside manner was not stellar, as least his surgical skills are known to be!).  I learned that Ovarian Granulosa Cell Carcinoma is a very rare cancer (less than 2-3% of all cancers…why am I always getting some shit no one’s ever heard of before? SIBO? Pylori? Now this?!?!?!  :P).  Of course it is.  It is most often seen in women over 45, non-white women, and women with ovarian cancer in their families. None of which I have/am.  Again, of course. Because it is a rare cancer, there isn’t a ton of research on treatment/protocols/survival rates.  Some, but not a lot. My ND was insistent that I get the endometrial biopsy regardless of whether or not I start to menstruate again, which I agree with.  The peace of mind would be welcome. We also agreed to start me on natural chemotherapy as a preventative measure (which basically involves very high doses of IV Vitamin C…many lyme patients actually use this protocol so some of you may be familiar with it).  She also informed me that according to the biopsy report, the entire mass was about 17cm, and the cancerous tumor was about 12cm. HUGE!  Gross.  She also delivered the good news that I am officially a stage 1A.  Oh hells yeah.  Can’t beat that!  I’m a cancer overachiever, ya’ll!  She gave me a lot of stuff to read and told me not to let the doctors intimidate me.  Doctors can be domineering, ego-centric, and cancer is scary, so the combination often results in deer-in-headlights-with-cancer syndrome, but she warned me to be aggressive.  “They work for YOU,” she told me.  

So, there you have it.  My update is not at ALL what I imagined it to be.  It’s kind of funny, I’ve been doing a lot of thinking/reading/pondering about

‘The problem is I can’t tell the difference between a deeply wise, intuitive nudge from the Universe and one of my own bone-headed ideas!’

intuition…leaning into it, listening to it, learning to rely on it a little harder. But I often joke that my intuition is broken.  It’s ALWAYS wrong.  If my small intestine is the slow kid in class, my intuition is the overly-confident loudmouth that sits in the back shouting the wrong answers.  I was SO SURE that this wasn’t cancerous.  I confidently told everyone this.  Now who’s the dumbass with cancer?  I need to just listen to my gut and then do the complete opposite of whatever it tells me.

Okay, back to SIBO (but actually, this next part applies to a new cancer diagnosis, too…however I’ll use SIBO for examples).  During this whole surgical process, I was super afraid it would bring back SIBO symptoms.  I know, I know, a chick with cancer shouldn’t really be that concerned, but I think I’ve been hyper-focused on it because it feels like something I have a little more control over.  I had ALOT of time to think and be online during this recovery time.  I commented on every post anyone ever made on facebook. I’m sure everyone loved that. You’re welcome. It got me thinking more about what I alluded to on my last post.  When you get a chronic illness, your life drastically and immediately changes.  It’s a SERIOUS adjustment.  As such, it’s really interesting and important to allow yourself to move through the grieving process.  We’ve all heard of the steps of grief: denial, anger, bargaining, depression and acceptance.  My stages of grief are usually: Eat body weight in pizza and chocolate (denial); pick a fight with my husband for no apparent reason (anger); decide to give up pizza binging ONLY if I’m still allowed wine (bargaining); cry intensely while watching something like Grey’s Anatomy (depression); and finally wake up one day, start a damn diet, exercise, start a blog to bitch publicly about my woes, and take every supplement ever created (acceptance).  I see it often in the forums. What it looks like:

Denial and Isolation: “I don’t believe I have to stop eating ____ because ____” OR “I refuse to give up ____ because I’ve eaten it my whole life so how can I be reacting to it suddenly?!?”  I believe denial to be a very key part in the grieving process.  It’s a self-protection thing; not looking at what we really have to face because we’re not ready.  I often like to set up camp here and hang out until someone smacks me in the face with reality, which I find very irritating indeed. Another interesting part about denial is how we pull others into it. Meaning, sometimes we can’t face the truth and we try to ask others for their opinion. We pull people in that we know are emotionally or socially invested (friends, family, others with our same illness) to help keep our delusions.  We tell them to be “brutally honest” but they often cannot.  They will tell you what they think you want to hear or what they personally wish to believe because they are emotionally and fervidly invested in us and care about us.  Their own emotional attachment clouds their vision as well, as we sweep them up in our denial and make them play our denial-filled game.  🙂 Isolation is sometimes used by social workers in conjunction with the denial stage.  This reason is clear, right?  We isolate because we don’t want anyone else to break our denial.  I don’t WANT to leave my house bubble of pizza and Gilmore Girls because someone might actually try to tell me that eating pizza 6 meals a day isn’t good for a digestive condition.  

Anger: “I am so sick of this shit!  I will not be on this strict diet anymore!” OR “Everyone in this forum is wrong and I’m pissed so I’m going to take it out on everyone and everything around me, including getting completely furious and taking things out of context that I normally wouldn’t! RAWWWWR!” Anger will manifest itself in so many ways, won’t it?  Anger at our loved ones for not “getting” it, anger at our friends for not respecting our dietary restrictions, angry at all of the people around us happily munching away on pasta and pizza without a care in the world, anger at ourselves for not taking our health seriously or taking things for granted before we got sick…sigh.  Anger is one of the easiest emotions to go to.  Getting furious is a way of channeling pent-up energy.  It’s a way of making sense of some of the grief you’re feeling.  Even if you have the presence of mind to realize that your anger is illogical or WAY out of proportion with the situation, it’s still an easier go-to than sadness.  My husband and I have a joke about the anger stage.  He calls it my “Bouts of Aggression stage” (aka BOA, as in, “You’re having a BOA right now”).  I’ll get super worked up about something and I’ll look at him and his eyes are big as saucers and he looks scared.  BOA.  Anger too, is a protective stage.  And, when you are facing an unjust loss, it’s natural to feel angry about it.  One of my favorite professors from Grad School, whom I’ve quoted on here before, always said, “Feelings are neither good nor bad, they just are. ” I love that, and try to remember it when someone else’s feelings don’t make sense to me.  

Bargaining:  In the movies, people in this stage are always making deals with God…of the “I promise to go to church every Sunday for the rest of my life if you’ll only…” variety.  In real life, bargaining takes on so many different forms.  “If I give up milk, I can still have sugar.”  OR “I know exercise is important but I don’t feel well.  If I don’t exercise but stick to the diet strictly, it evens itself out, right?” With SIBO, other than denial, this is the stage I see most often. Probably because it’s so glaringly apparent.  😛 Bargaining statements also often come in the form of “what ifs” and “if onlys.” We might even try to bargain with pain or with the past.  We get so desperate that we will do anything not to feel more pain or loss.  So we choose to dwell on the past, trying to negotiate our way out of our present situation, as if we can step into a time machine and change our past decisions. It’s important to note that bargaining is often a reaction to feeling helpless or scared or vulnerable and is sometimes used as a means to gain back power and control.  We bargain and beg with the SIBO gods (or devils…lets face it, those assholes are probably devils and demons) in an effort to feel like we actually have some kind of control over the outcome.  

Depression:  “I want to die.”  OR “I can’t imagine anything being harder than this.”  OR “No one understands and I just want to give up and I don’t care what happens.”  The depression stage is a DOOZY and is often the one people get most stuck in.  While often we oscillate between stages, it is common for depression to last the longest.  It’s the catastrophizing stage, the stage in which we lose perspective.  If you are thinking to yourself while reading this, “NO! YOU just don’t get how horrible this is for ME!” then I challenge you to do some deep thinking and soul-searching.  Is this the worst it could ever be? You might feel the worst you have ever felt, but do you have people in your life that you love?  Do you have a roof over your head and disgusting SIBO food in your belly?  Because if you have those two simple things, you are MILES above many people in the world.  This isn’t meant to shame you. Depression is also an important stage and one that everyone (me, too!) has to move through.  It’s important to emphasize that the depression stage is not a mental illness.  While therapy can help and is indeed suggested by this social worker, the depression stage is the appropriate response to a loss.  We are grieving the loss of our old life, of our old way of being.  It’s hard.  We’re left with intense sadness we don’t know what to do with.  So let yourself feel it, try not to chastise yourself for being sad or for catastrophizing, but also, don’t move into depressionville and set up shop.  For one thing, most people in your life cannot handle it and you will end up even more isolated than ever. And for another thing, it’s a terrible way to live.  Give yourself full permission to grieve, and then give yourself full permission to let go and move forward, because you’re better and stronger than the depressed version of yourself. You’re YOU, and you’re a one of a kind…a damn snowflake or some shit.  

Acceptance:  Ah, the holy grail!  You’re here!  You made it! Everything’s gonna be ok!  Wellll not entirely.  That is why acceptance is still a stage, instead of a state of being.  Most people are not ever going to feel 100% ok with a significant loss.  There will be times in which you’re still pissed that you can’t find something to eat, times when you’re still a little down, times you may decide to regress to bargaining because you realize a new food is actually bothering you.  Acceptance is about learning to adjust to the reality that this is your new permanent reality.  We may never love this reality, but we can learn to live with it and accept it.  This new lifestyle becomes our new norm.  The inclination is to sometimes try to live our old normal life as it was pre-diagnosis, but through time and acceptance, we learn that we must adjust.  Our lives have been forever changed and we must learn to adapt by reorganizing certain aspects of our lives.  Acceptance might simply boil down to just having more good days than bad.  And that’s ok.  Those good days will slowly increase.  

This all might seem quite obvious to you, but I think for many, we don’t realize when starting out what a long haul this is going to be.  Many seem to think they’ll pop a few antibiotics and poof!  They’ll be cured!  People even seem overwhelmingly desperate to get those antibiotics (which in some cases can be hard – some insurance companies don’t cover it and some docs refuse to prescribe them).  And I’m sorry to tell you, but antibiotics are not the key to this illness.  If they were, we’d all be better.  Unfortunately many doctors don’t help, as they tend to downplay or flat our refuse that some digestive issues exist at all.  The point is, while punching SIBO in the junk is absolutely possible (and encouraged!) it can take quite a while.  And understanding and accepting where you are in the grieving process can help you cope.  Don’t beat yourself up, feel your feelings. It’s not fun to be chained to your toilet (but thank God for the internet, right? Don’t even ACT like you don’t do it!), it’s unfair that others can eat whatever they desire, it’s frustrating that even healthy foods and a strict diet hurts your belly. And while I always want you to be true to your feelings, I also want to encourage you to keep perspective. You know what’s hilarious?  I always used to say, “SIBO sucks, but at least it’s not cancer.”  Hahahaha whoopsie!  (See?  My ridiculously dumbass intution really had NO idea).  Lastly, try not to expect everyone else around you to “get”it.  Humans are flawed and often can’t quite empathize until they go through something similar.  Accept where you are, then try to move forward. You can do it.  🙂

I want to thank you for reading.  I want to thank you for your amazing support, kind words, hilarious jokes, kicks in the ass when needed, and my fellow SIBO partners for befriending me, helping to guide me, and challenging me to just keep going.  Imma working on my Recipe page and will have 6-7 new recipes coming your way soon!  Also, if you’re new to the blog and new to a SIBO diagnosis, check out my SIBO Guide page for some guidance on good resources.  If you have questions about H. Pylori, the Elemental (there are actually 4 entries on this!), or how I came to decide on the Fast Tract Diet, scroll and read or click the highlighted links for more info.

Until next time, aloha!  🙂