Post surgery complications – removal of breast implants

This time last week I was waking up from the double mastectomy and reconstruction surgery that I had anticipated for about 6 months.

This time last week I felt centered, unnerved and confident and never would have though that I’d be in the position that I am right now: implant-less & devastated.

Within a week of my bilateral mastectomy, my implant reconstruction has had to be deconstructed, leaving me looking disfigured, and feeling absolutely shattered.

This time last week I had no concept of what excruciating pain was. What was considered a 10/10 is now a measly 4/10 on the pain scale.

This time last week, I thought that by today I’d be at home with my new breasts recovering, but instead I’m still in hospital high on oxycodone feeling as if my space- bag look -a- like concave boobs are about to implode. Its simply awful.

Tuesday 6 June – Surgery #1

Initially, my surgery last Tuesday had gone really well and my surgeon was pleased with the results. As soon as I woke from anesthetic I looked down and I kept asking the nurse “is this normal, is this normal”? as my boobs were bruised, rippled, and full of dents. They were lumpy and misshaped as a result of the muscles being out of whack and because of the tightly packed surgical drains whose tubes hung out the side of my body to drain the fluids from the wound site.

Despite months of mental preparation, the whole thing was really confronting and a very clear reminder that a double mastectomy is NOT A BOOB JOB. It sole purpose was to remove the whole breast tissue to prevent cancerous tumors returning, so I had to remind myself of that whenever I cursed in pain or grimaced in disgust at my temporary ripply breasts. They would even out and become less inflamed over time. My surgeon said, “Look at them in 3 months, that’s when they’ll be beautiful.”

Captain hindsight aye. And there I was thinking those breasts were unattractive, god help me now.

It felt like there were a tonne of bricks on my chest as the pressure is intense. I resembled a T-Rex with my elbows glued to my sides with restricted hand movement. The pain would quickly remind me if I was extending too far and the sharp dagger like sensation would bring me back to earth, horizontal on my bed. The pressure and tension was certainly worse than the pain.

Thursday – Day 2 Post Surgery

It was on the Thursday when the fevers began and the unusual blotchy pink rash on both boobs appeared. Delirious with fever and excruciating headaches, I spewed and fainted causing concern for my Doctor as she and other surgeons hadn’t seen this kind of reaction before. Post surgery infections don’t normally show up so soon after surgery which is why this seemed odd. I was closely monitored and tested for everything under the sun.

Each day my blood test results would report back clear with no indication of what was causing the spikes in temperature and the rash, causing further confusion surrounding the cause of my problem.

Friday – Day 3 Post Surgery – A game changer

My surgery pathology report came in: my 2 left breast sentinel lymph nodes and breast tissue were FREE OF CANCER!!

Since that day 8 months ago when I heard the dreadful words , “You have Invasive ductal carcinoma” all I wanted was to know if it had spread. Did I have cancer elsewhere in my body? Was it in the Lymph nodes? If it was there, had a rouge cell made its way past the gates of the sentinel node into the lymphatic system and made its merry way into other parts of my body?

Finally I had the answer.

There was NO sign that showed cancerous cells to be, or more importantly, to have been in any of the two main sentinel nodes of mine. That means the cancer was isolated in my breast, in the form of the two tumors and they were now gone. And so was the surrounding tissue. All the breast tissue from both sides was analyzed and showed NO signs of cancer.

Thank. You. Universe.

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I am Free of Cancer. Cancer Free. Free from Cancer.

With a rip roaring headache and increasing temperature again, the celebration was quite the anticlimax being shadowed by how dreadful I actually felt. It would hit me the next day when I really felt the relief and joy.

I slept for 5 glorious hours straight that night, not even waking during obs so I guess that was the best & most relevant celebration I could have asked for.

Sunday – Day 5 Post Surgery

My surgeon discussed my case with a few colleagues and suggested the unusual rash could be caused perhaps by a microscopic bug that could have been attached to my port-a-cath. The port-a-cath was inserted above my right breast as an access line used for chemo. It had been there for 8 months with no problems, but they think that as soon as the port was dislodged that perhaps the “bugs” then escaped and contaminated the breast cavity wound during the bilateral mastectomy, hence causing this slight infection and irritation of the skin.

This could be just a rare case of pure, shit luck.

The obvious thought was that I might be allergic to the implants themselves, but this is not the case due to the way the rash appeared high on the breast where the muscle is.

With no real improvement the call was made on Sunday morning: remove the implants + flush out infection.

I headed straight back in for my 2nd surgery to have my new breasts removed. The implants weren’t the only thing stripped of me that day, so was 6 months of emotional preparation, positive visualization for recovery and a whole lot of energy. When my Surgeon regretfully told me of what needed to be done, I was at my lowest & most vulnerable point so far. It’s like someone moved the finishing line after a marathon, adding on an impossible extra leg that at the time I couldn’t begin to fathom.

Yes I kept reminding myself of that beautiful fact and gift of being Cancer Free, but on that day, I couldn’t even see past that fact.

I was done. I had nothing left. I was in so much physical pain, exhausted and all cried out. I just couldn’t believe it. And I couldn’t believe how I was going to face another 3 surgeries before I left hospital in a fortnight. I felt like I had already used up all the reserve fuel with the 2 week delay I had already faced with surgery having been postponed due to low platelets.

But I moved forward.

My surgeon removed the implants, replaced my surgical drains with tubes that are part of V.A.C VeraFlo Therapy.

V.A.C VeraFlo Therapy attached to the side of each breast

V.A.C Ulta is a Negative Pressure Wound system that continually cleans and flushes the wound site so the plan is to have this “flushing” therapy for the next 6 days to rid breasts of this infection.

There is a constant flow of solution being pumped into my breasts, if you can call them that. I can feel everything. Then every 3 hours, for 15mins the “flushing” happens on the left side and then the right, so 30 minutes of horrible pain. The first flush I experienced after the surgery was the most excruciating pain I have any experienced – it felt like boiling hot oil and needles being poured into my chest. I screamed and cried and wished my sisters and Seany hadn’t witnessed the agony I was in as it was clearly breaking their heart.

Endone & Morphine barely touched the sides. They quickly hooked me up to a PCA – Patient Controlled Analgesia which means I can control the pain with oxycodene. Because the flushes happen every 3 hours, it means I need to keep boosted up before this happens. It was significantly worse post surgery as the wound site was already extremely tender and raw still from the first operation only 5 days earlier. I’m getting serious thumb cramps from using it.

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At first, I would try and tell myself “you’re cancer free” over and over as a mantra, but it was no good. I just needed the past two days to cry, to acknowledge those enormous feelings of disappointment, disbelief and self pity. And to give my self permission to release it all as part of my emotional healing.

NOW

Today, I’m back and I’m feeling like myself again. I am surrendering to the process once again and moving forward.

I have my 3rd surgery tonight to make sure everything is peachy and the VAC VeroFloTherapy is doing it’s job. Then I’ll have another 3 days of flushing before the 4th Surgery that will take place on either Friday night or possibly Saturday morning.

The VAC VeroFlo therapy tubes will be removed and instead of being replaced with implants, my surgeon will need to put in tissue expanders. My skin has shriveled significantly since the implants were removed, and also due to the suction of the VAC VeroFlo Therapy. The implants I once had, will not actually fit in. She will pump up the expanders about 3/4 full and I will be in hospital for a remaining 5 days on antibiotics to monitor and prayer that there are no further issues.

The tissue expanders will stay in for 3-6 months, and I can get them filled up to the size I prefer over time. So that’s great. But I’m praying there is No rash and that this whole shitty curve ball was due to microscopic bugs that caused the infection. Because the alternative isn’t great.

My surgeon advised me that I need to be prepared that this might also all be simply due to a weak constitution from chemo.The low platelets and delayed first surgery was a clear sign of that, and this could well be another indicator of this.

She said there is a good possibility that perhaps my body just can’t handle reconstruction right now. If this is the case, then I’ll need to have no implants or expanders for at least 6 months. Just loose, skin flaps.

This is really hard for me for accept. Today I can rationalize that at least I have my life. And yes, I’m free from cancer. But fuck, it doesn’t take away how downright disturbing & emotionally gut wrenching this is. I just can’t see how I need to be tested any further. I was totally caught off guard with this current complication, so as much as I don’t like this possibility, I need to address it as much as it is my worst nightmare.

The road to recovery has been a dramatic detour for me so far, one that I’ll hopefully consider as a scenic route one day, once these 20 tubes and chords are removed from my body, and my beautiful breasts are returned to where they need to be.

 

 

 

Horray for hair & hemoglobin !

You can’t turn back time (okay maybe last night was an exception because of daylight savings), but you can certainly turn your back on a shit time and replace it with a better one. This for me meant topping up my red blood count with a couple of bags of O+ to forget a really fatigue filled week. However, my hemoglobin increase isn’t the only thing boosting my energy vibe and confidence…

I have HAIR! And I’m not talking about the blonde fledgling fluff on my scalp that I’ve been sporting for the past 4 months. This hair is brown, long and real. Yeah it’s a wig, but the hair is real! I look like me. I feel like me!!

As I type this blog whilst sitting in hospital on a Sunday getting a blood transfusion, I feel bloody good thinking about how much better the end of the week has been.

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I picked up my handmade real hair wig on Thursday which had been 4 months in the making. At the time I was utterly exhausted and knocked about by the bitch that is fatigue so felt like it was just another routine appointment, but by the time I walked (strutted) out of Kylie Clarke Wig Maker Studio with my new do on, I felt like a new vitalized version of my old self. I couldn’t stop smiling, or looking in the mirror for that matter. I feel so vain as I can’t stop tossing it around, running my fingers through it, and thinking just how real (and good) it looks.

It looks real because it is real! The beautiful quality hair once belonged to 3 beautiful girls. 2 of them are strangers with whom I am determined to hunt down and kiss the feet of, and the other 1 is my Step Mum, or Other Mother as she likes to be referred as. Peta so kindly cut her amazing hair and offered it to me as gift, one that I’ll forever be grateful for. Having already shaved her head for the Worlds Greatest Shave numerous times in the past, this time she had someone to give it to and I’m so lucky it was me.

I’ve learned to be careful what I wish for because there were many times that my adolescent self had said to her “I wish I had your hair”… as I crudely attempted to tame my own locks either by iron or curling tong. How funny it is to now to be proudly parading around with her Pantene perfect mane.

These 3 people aren’t the only ones that I owe my great love and appreciation to, but also over 300 other generous and warm- hearted donators of a different kind.

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Getting a real hair wig had not crossed my mind as an option to be honest, mainly because of the cost (range between $3- $5 K +) and because I was too busy thinking about getting the cancer out of my body that my appearance wasn’t really a priority to start with. The Gofundme Page that my gorgeous friend Jaala created along with my girlfriends was such a shock to discover.  With the intention to raise a small amount of funds to help put towards my wig, it surprisingly turned into something much greater than expected, and once I found out about it, I was literally floored. The simple act of kindness by so many people who donated is the reason I sit here today with my fresh lush locks and new sense of confidence during a pretty shitty time in my life. And for that, I’m forever thankful! The only tears I’ve cried surrounding my baldness  are those tears of happiness that the wig has given me over the past two days.

I LOVE my wig. I can style it, blow dry it, curl it, wash it (not when its on my head), and more importantly pretend that I’m not the breast cancer patient that headscarves often remind me that I am. I can be normal (or appear so at least). It’s so refreshing to be able to get dressed in the morning and choose an outfit I want to wear rather than deciding on something that I need to wear because it suits my headscarf. Sounds ridiculous but its true.

Receiving my new wig has made me realize just how much I have in fact missed my own head of hair. I have become so accustomed to seeing my white egg head that my old self seemed like a distant memory. And that’s okay because deep down I know I’m not the woman that I was a few months ago, even if I now look like her again. I like to think of this whole experience as a Caterpillar metamorphosis – whereby self transformation and change will lead to a better version of myself, and yep, will eventually lead to new fresher hair too.

The joy and warmth this wig has brought me is indescribable.

One thing is for sure, I have mourned the loss of my eyelashes which has consequently affected my confidence more than my hair loss has. But alas(h)! I’ve found a solution that I wish I had of come across earlier as these little beauties can be reused 25 times and instantly reignited my femininity fire:

Just like a caterpillar wraps itself in a cocoon of silk before it morphs into a a butterfly, I’ll use my new gorgeous wig and Artemes lashes as a protective layer whilst I continue with chemo and await the time my own wings (or hair) begin to flourish again.

Breast Cancer, Diet and Nutrition

In regards to Breast Cancer, Diet and Nutrition there seems to yet again be different opinions & recommendations as what the right approach is, depending on whom you speak to. No matter what topic I discuss with other breast cancer patients, or different Doctors and Nurses it seems that conflicting opinions seem to present themselves, once again proving that there is no linear path but rather an array of viewpoints one must navigate through in order to choose and follow.

For instance, the first breast surgeon I was referred to by my GP said that I’d just need radiation for treatment, chemo might not being a necessary. She also said I could eat and drink (booze included) whatever I wanted and not to worry too much about diet and nutrition,”if you want donuts, eat them!”

Wondering what cancer looks like? Well there you have a 2.8cm x 2.2cm tumour dissected in three. If that doesn’t make you question that unnecessary extra spoonful of sugar in your tea then I don’t know what will.

Being told by a Doctor that diet and nutrition wasn’t really an issue was really confusing and alarming as I thought cancer was fueled by sugar? Alcohol and donuts certainly would fall under that umbrella of being high in sugar right? I mean, a PET scan is used to determine if cancer is present in the body by using radioactively labeled glucose to detect sugar-hungry tumor cells!

The second breast surgeon I saw (whom I decided to move ahead with for surgery and treatment) was appalled and gobsmacked that the first surgeon had suggested that chemo might NOT be an option. My grade III aggressive breast cancer pathology report screamed CHEMO! And yes, as you guessed she was shocked about the approval of the Crispy Creams consumption as well.

Google is a great tool, but perhaps not for a cancer patient trying to find the right answers and path when it comes to nutrition, and treatment options! There are so many articles that are ANTI CHEMO: CHEMO IS TOXIC  POISON etc. yadda yadda. And of course, many websites with endless “do and dont’s” when it comes to what kind of foods to eat.

Being  31 yr old faced with a life threatening disease is hard. This isn’t made easy by reading articles that tell you that chemo can kill, and cause cancer and that rather, you should have Vitamin C injections and eat turmeric until the cows come home as a form of cancer cure and prevention. Naturally, confusion and distress hit home.

My thinking was that if I managed to get cancer despite having being a healthy and a relatively clean eater prior to my diagnosis, then how would continuing to eat healthy and taking ONLY natural supplements, as some websites suggest, actually cure me? I guess now knowing I am BRCA1 carrier also affects the outcome as I was predisposed at at higher risk already… but still.

I wonder how many of those ‘authors’ have actually been in my shoes with 2/3 of their life ahead of them and the choice between medical science such as chemo vs Only natural foods and supplements as treatment options? Would they be a judgemental as they appear?

My treatment choice: Integrative / complementary medicine. It combines conventional medicine such as chemo with evidence-based complementary medicine such in my case, acupuncture and natural supplements to help support my healthy cells and immune system. Rather than choose one treatment over the other, I choose combining forces with conventional and complementary in the hope of beating the Bitch Tit.

Due to the fact that I was at my peak fitness and health when I was diagnosed, I feel that it has definitely contributed to putting me in a better position to fight off the chemo side effects.  I had completed a Purium 10 day Transformation reset/cleanse/detox mid last year and felt better than I ever have. I continued using the products after the cleanse on a daily basis to keep optimal health ensuring I was getting top notch protein, veg and fruits.

My oncologist, her registrar, nurses, and my surgeon all told me to eat well! Lots of veg, fruit, whole foods. Naturally I wanted to continue following my daily routine of Purium as this is all about natural organic wholefood nourishment. However I was surprised that they then told me to STOP taking my Purium Green Power Shake (Veg component) and the Apothe Cherry Drink (fruit component) because they could be counterproductive to chemo. I was confused. They want me to eat well, but not that well? They said the Purium products were amazing for average Joe Blow, but for a cancer patient like me, they were in fact too high in vitamins, antioxidants and nutrients. Go figure- They’re too healthy for me! The purpose of chemo is obviously to kill fast growing cells such as cancer so the fact these products regenerate and repair cells so quickly would be an issue in my case as they would be counter productive to the chemo. Fair call.

Cutting this out of my daily routine was hard, but at least I’m reassured that I’ve got the best chance of bouncing back and helping my body heal and flush out all chemo toxins on a cellular level as soon as I wrap up my last chemo session. Even if I put on more weight, I’m not concerned as I know I’ll shed it easily afterwards by smashing out a 10 day Transformation. My priority is killing the cancer for now, so I trust the fact my body can heal and bounce back later when the time is right.

My naturopath and oncologist agreed that I could at least continue taking the super amino 23 which was a huge relief as this is a pure source of vegan protein and essential to keep strong and fight off the anemia which was threatening my blood count half way through my treatment. And also to help reduce weight gain by reducing fat, whilst maximizing muscle mass which is great too for patients trying to increase weight. So works both ways.

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It’s not just hard being faced with losing your hair but then you have to witness your eyebrows and lashes  disappear, whilst your appetite does the opposite!  Not only that, but your face starts blowing up from the drugs (and increased food consumption) and you feel inflammed and yep, fat. Its a bit of a myth & misconception that most chemo patients lose their appetite and shed weight. Nope, quite the opposite for me! Thanks to the unpleasant steroids that not only make me wired & unable to sleep well for the first few nights after chemo (hence late night/early morning blog post) they also make you wanna chow down. And yeah, I’ll admit, I’m certainly not racing for the steamed broccoli 100% of the time or easily avoiding the carbs as per my naturopaths request to follow a ketogenic diet. It comes down again to balance and moderation. I mean, if I’m pumping my body with hectic chemicals like chemo, then surely a few pieces of dark chocolate to break the ketogenic diet won’t kill me?

Seeing chemicals (toxic yes) being pumped through me every week has been really challenging. So knowing I’m taking natural supplements to help support my body combat the harsh side effects and assist gut health, immunity and overall balance creates a sense of control, gives me feelings of faster healing hope, and also creates a sense that I have a greater personal power and involvement.

By integrating Chinese medicine such as acupuncture twice a week I am helping  improve red and white blood cell production, which is essential to keep my immune system from crashing. It’s purpose is also to help reduce hot flushes, nausea, pain, digestive problems, anxiety and stress. Perhaps this is contributing to why I am not suffering such severe side effects and tolerating chemo much better than I had expected? At least I like to think so.

What is fascinating, but more so confusing and upsetting is how another similar aged patient who I met last week is suffering the same kind of cancer (Triple Negative & BRCA1) yet has been advised by her oncologist NOT to take fish oils or ANY natural supplements. This a prime example of how crazy and confusing it can be with conflicting advice from medical professionals. Two patients, two exact cancers, two oncologists and yet two different opinions.

For now, I’m going to trust I’m on the right path and will keep trying to do Pilates and exercise between kips when I can, follow my ketoegenic diet, have acupuncture twice a week by embracing those little needles, and yes, smash the odd cacao bar when I feel like it!

T U M O U R // F R E E

It’s a strange feeling knowing that there’s a tumour in your body. You immediately want it out. Cut it out. Zap it out. Fry it dry. You’ll do anything to get it out there and then. It’s as if you’re possessed by some kind of demon that takes over your every thought. It’s like an exorcism of sorts where you’ll swear on oath, on every form of higher power known to you and your belief to evict the demon within. In my case the elaborate exorcism ritual has been in the form of chemo.

So Monday was the day we found out whether this crude exorcism has been doing it’s job. It had been a long anxious wait for this day  which would be a great indicator of my progress, and would more importantly give me an answer at last. Sunday was indeed a sweaty sleepless night with all possible scenarios running through my mind as to what the ultrasound scan would reveal. I was just praying to the universe that it hadn’t grown! That’s all I hoped for.

Surprisingly I was very calm on Monday morning. Mum was there by my side on the day at the Imaging Centre, taking deep breathes for the both of us as we watched with anticipation as the specialist scanned the lubed up culprits.

The result : NO sign of the small tumour anymore. The little devil that so distinctively presented itself on the ultrasound monitor less than 2.5 months ago, was GONE.

9 weeks of chemo and I was TUMOUR FREE!!! I should have cried, but I didn’t.

I couldn’t really fathom what was on the screen, which was nothing, as last time there was a clear black mass which I guess I had expected to see again. I felt quite numb, almost apprehensive. I’ve had a few low blows so seeing that this was the first amazing result, I was a bit hesitant to accept it was actually real!

I had been manifesting this result and had imagined I’d be screaming with elation and crying tears of pure joy, but there was actually none of that. I was too emotionally exhausted from not just Sunday nights sleepless night, but I guess also from a culmination of the previous few months unanswered questions and that underlying anxiety that lingered more often than I’d like to admit. And in hindsight perhaps I was scared to really get excited out of fear that I’d get the call saying “Sorry we go it wrong”. The Cheshire cat like smile on my specialist’s face should have triggered some kind of outrageous reaction from me, but instead I just took it all in with the deepest exhale and feelings of pure gratitude and relief. And yeah, I’ll admit a bit of disbelief too.

The fact that I’m TUMOUR FREE  is bloody AMAZING!! I’m beyond stoked and feeling so ecstatic. However it doesn’t mean that I am Cancer Free. There is still the chance that there are cancerous cells in the breast area surrounding my tumour/s and of course the lymph nodes. The final test to confirm whether the cancer has spread to the lymph nodes can only be done whilst I’m under a general anesthetic and cut open which will be during my next surgery. They will inject a blue ink into the area and if the ink spreads up into my sentinal and or other nodes, then that indicates that the cancer is present. These will then be removed to prevent the cancer from traveling through the rest of my body. If this is the case the I’ll also need radiation after this surgery. If there is NO sign of cancerous cells in the lymph nodes then I’ll be able to by pass radiation. Because I’m having a double mastectomy any cancerous cells surrounding the areas where my tumours were, will all be cleared when the whole breast tissue is removed.

Another massive relief is to finally have some answers regarding my double mastectomy and reconstruction. I’m so so so relieved to know that I can have reconstruction at the same time as the double mastectomy meaning that I can wake up and have implants and not have to wait for a second surgery for this procedure. I was so scared that my surgeon would tell me that I need to have a double mastectomy and then radiation before reconstruction. I know boobs or hair or eyelashes don’t define me as a person or woman, but it doesn’t mean I want to wake up without them. I’m so amazed at all those strong powerful women who decide that reconstruction surgery isn’t necessary for them. But I choose boobs! And I’m proud to say it.

Listening to my very confident and comforting Breast & Plastic Surgeon describe the two different options for surgery provided me with such relief and reassurance as what I thought would be a barbaric surgery, is in fact something less brutal than I had thought. Sure it’s going to be confronting and emotional, tight and painful, and yes ‘draining’ in more ways than one, but at least there will be some ‘perks’ to this whole breast cancer debacle in the form of some sweet C cup Ta-Ta’s.

What’s so fascinating is that less than a month prior to being diagnosed I had sat on a beautiful beach in Thailand feeling so content with life & love, with my heart bursting with gratitude thinking there has to be some kind of adversity that I’m going to be faced with in life, because one can’t simply be this fortunate. I’ve always been pretty in tune with my gut, so perhaps this was it’s way of revealing a warning of what was soon to come.

At the time of the tumours discovery I felt tainted, dirty, guilty, contaminated. I felt like I’d done something wrong, or brought this on in some way. However, my logical mind was able to rationalize this thought and eradicate it pretty quickly. I’ve never once said or thought “Why me?” but rather just accepted that it’s one of those times when you just get dealt a pretty shitty card, something that can’t be controlled no matter how many times you want to curse, blaspheme and or cry.

The one very powerful thing that I have realized that I can control in this whole cancer conundrum is my reaction to this not so fabulous circumstance.  A beautiful friend of mine sent me this quote by an unknown author  which I continually draw strength & inspiration from:

CHOOSE YOUR REACTION
No matter what somebody does to you or what life throws up, you can choose your response. Jesus called it turning the other cheek, Buddhists practice it by reacting to good and bad with equanimity, and the ancient Jews saw it as a case of never laying blame on others for the way you feel. Blame is epidemic nowadays, but you need to understand it’s as pointless as getting angry about the weather.
In this life, you control nothing but yourself.
If you can overcome your impulse to blame and choose your reaction instead… a magnificent life presents itself where you are the master of every decision you make. Controlling impulse….is the hardest test in life, but ultimately, my darling, it will set you free.

– Author unknown

I choose happiness. I choose hope. And above all I choose a magnificent, malignant -free life.

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The waiting game

When you’re scared shit-less after finding out you have cancer, the last thing you want to hear is “just take one step at a time” or “time will tell” or “you’re going to be fine, wait and see.” I’m lucky I didn’t end up in the clink, because I swear to god, if one more person had of said that to me I would have snapped.

First self discovery:  my patience as a patient is pretty rubbish.

The waiting game was, and still is, the pits. Waiting for a treatment plan. Waiting for surgery to find out whether the cancer has spread. Waiting for another ultrasound in 2 weeks time to see if the small tumor that is still in my left breast has shrunk, or hopefully disappeared. Waiting to see whether I’d need a lumpectomy or mastectomy. Waiting to see if I need radiation. Waiting to find out if my little ovaries will fire up again. Waiting to see if I need endocrine therapy. Waiting to see what our future holds.

Another huge player in this waiting game were the results of my genetic testing which took 5 weeks to receive.

My Grandad had breast cancer. He concealed it for 4 years from my Nanna and family. Sadly the breast cancer metastasized to his bones, and he lost his life nearly 20 years ago. He was 72 yrs old. Was it fear and shame that prevented him from speaking out? Even today, breast cancer is seen as a ‘woman’s disease’ by many, simply due to limited awareness surrounding male breast cancer, so I can only imagine how unusual it must have seemed nearly two decades ago for him to discover he had a lump in his breast.

With this knowledge, I did some research and discovered that I wasn’t the only female in the paternal line to suffer from this common disease. My Grandad’s Aunt and also his niece (Dad’s cousin) unfortunately suffered, and lost their battle to the beast. So the idea of doing genetic testing to see whether I inherited this abnormality was a no -brainer.

The results arrived the week before Christmas.

Positive for the BRCA1 gene mutation.

Cheers, Santa. Awesome gift, Champ.

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Considering my family history, the results were kind of expected but despite a bit of relief to have an answer, it now meant I had another huge hurdle to consider: Double Mastectomy. Yep, I definitely cried a lot on the way home from the hospital. But after waiting, waiting, & waiting for all kinds of different answers, at least I finally had one. BRAC1 gene mutation at least gave me some direction as to what I needed to consider for surgery and what my risks are for possible future recurrence.

So you’re probably wondering what the hell BRCA1 is?

Every person, both male and female are born with BRCA1 and BRCA2 genes. They represent BReast CAncer genes which act as tumor suppressors by producing a protein that actually prevent cells from multiplying uncontrollably. However, It is when these genes show abnormalities or mutations that then raise concern as cells can divide and grow too quickly resulting in possible tumors. Mutated versions of these genes cannot stop abnormal growth, and that can lead to cancer. So in my case, my BRCA1 gene has a faulty or mutated code which obviously resulted in a tumor. Well, two tumors as the large one is out and just the small on remains.

What’s interesting is that only 5-10% of breast cancer cases are actually from BRCA1 or BRCA2 mutations. Even if you have a faulty BRCA gene it doesn’t automatically mean that you will develop breast cancer:

Simply having a proven gene abnormality does not necessarily mean that a woman will develop breast cancer, or that her cancer will be any worse than cancer that does not stem from an inherited genetic flaw.

— Marisa Weiss, M.D., president and founder, Breastcancer.org

However, in my case because I have the BRAC1 mutation, it puts me in a high risk category of 40-80% for recurrence and or developing a secondary tumor. It also increases my risk of other cancers developing over my lifetime. Exciting stuff hey. It also increases my chances of developing ovarian or fallopian tube cancer with a 20%–40% lifetime risk which means I will need to consider a hysterectomy at age 40.

These statistics frighten me. A lot. If I’m only 31 and have already developed not one, but two tumors, then the likelihood of developing  another tumor or cancer over my lifetime is bloody scary. Prior to undergoing the blood test for the genetic testing I met with a genetic counselor who very briefly outlined a few preventive options subject to my results. I had obviously already done some of my own reading and research about BRCA1 and BRCA2 and had decided that if I received POSITIVE reading for the faulty gene, then I’d almost be silly not to have a  double mastectomy with such high risk stats.

So that’s my decision. A double mastectomy. I squirm at the thought of anyone even coming near my boobs right now as I’m still protective of my scars from my first surgery and from the port-a cath procedure. How the hell am I going to be able to cope with my whole breast tissue removed? On a physical and emotion level, this poses as a very solid challenge. But then if I decide NOT to have this preventative surgery for recurrence which is highly likely, then how the hell would I sleep at night wondering whether another cancer has developed? Right now, 4am seems to be a busy time for me mentally with the 54,877 question commonly spinning around my mind waking me up and keeping me frustrated and tired.

Although I’m not ready to deal with the reality of a double mastectomy right now, I do anticipate my appointment with my breast surgeon in a few weeks in the hope that I might get a bit of timeline to focus on. Right now its’ so frustrating not knowing when my surgery will be or how long my recovery will be for? Will I have reconstruction at the same time? Or do I need to have double mastectomy, then radiation, and then months later reconstruction? Has my cancer spread to the lymph nodes? Do I need sentinal node taken out too?

Feb 6 can’t come around sooner. However if this diagnosis has taught me one thing it is not to wish my life away. So in the meantime, now that I’m feeling pretty normal again after my last round of chemo (4) which was the worst so far, I’m off the beach to pass the time with some sun & salt therapy.

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Fatigue.

I nearly punched my Oncologists’ registrar in the mouth on Wednesday, but luckily for him, I was too fatigued to do so. I’m not an advocate for violence, but when he flippantly suggests ‘exercise’ as a solution to my then current state of intense lethargy, it seemed pretty called for. Fatigue clearly breeds frustration.

Fatigue. A word used often, but a feeling most probably don’t actually often experience. I admit, I’ve used the term so many times in the past but have only just now begun to understand the real meaning of the word. It’s awful. It’s been exactly a week since I had my third round of chemo and it’s taken 7 days for me to emerge from the thick chemo fog that I’ve been suffocated by over this period.I’ve been thinking how the hell am I going to manage weekly treatments come February?

Mentally, it’s a  constant battle as I’m wanting to make plans, enjoy the summer, the weather, the days, but for the past week my body just hasn’t let me. It has been betraying me. All it has yearned for is my Sealy Posturepedic and delicious linen bed sheets.

My initial frustration with the registrars suggestion that I try and go walking when I’m fatigued, was quickly replaced with joy when he then proceeded to tell me the fabulous news that my treatment plan has been changed, and more importantly reduced!! He said that I would have one less month of chemo, with longer intervals than originally suggested. One less month of feeling flat and fatigued.

The original plan was that from February my treatment involved 12 cycles every week. I was so concerned and full of dread trying to imagine  how I’d cope with weekly sessions, especially coming off the back of a rough week. The idea of waking up on day 7 finally feeling normal and ‘alive’ to then have to head back to the infamous leather recliner at Royal North Shore to be hooked up to the toxic juice, wasn’t exactly tickling my fancy.

So as you can imagine when the registrar confirmed my weekly treatments were being reduced to fortnightly, I was so unbelievably relieved. It not only meant that I’d have more time between cycles but I’d also have less of them, hence meaning I would finish treatment around start of April instead of May. I questioned him about this as I had it all written down  on paper from our first consultation. Despite Mum, Sean and I questioning him whether he had it correct, he was adamant that the oncologist had changed the plan due to finding out that I have the BRACA 1 gene mutation (but that’s a whole other story for another blog post) so we all walked out feeling like we’d finally been cut some slack.

I should have known better, and have kept the champagne on ice, or the San Pellagrino that is. My phone rang yesterday and it was the registrar who had his tail between his legs with the news that he had made a mistake. He was wrong. He had misinformed me of my treatment plan despite being questioned by myself, my Mum and my partner.

So Back to 12 cycles every week (blow 1). He also mentioned that due to the new combo chemo drugs my immune system will be especially low. To prevent this I’ll need a special injection different from the one I currently take. However unlike the injection I currently take, this one is not subsidized by medicare. Its about $2,000 per injection (blow 2). The registrar was so apologetic that he had forgotten to tell me, but he reassured me that the oncologist and team are trying to figure out how often I am going to require this. Hopefully not every week.  I don’t need my iphone calculator to figure out how steep that could work out to be. I just laughed. I wasn’t actually surprised. When you’ve already hit rock bottom, news like this just seems part of the circus parade.

So now I’m back to being faced with the barbaric bastard that is the weekly cycles of chemo and it’s trusty sidekick, fatigue.

Why I loved 2016

2016. It’s been a bloody amazing year! Yeah sure put aside the fact the last 2 months of the year haven’t been cartwheel – worthy with the old cancer diagnosis, but it’s still been such a freaken fabulous one! It’s a  year I’ll always remember with gratitude to be honest as I ticked off some bucket list items, laughed a lot and ironically reached optimal health and body awareness in June when I found the amazing organic wholefoods of Purium – just 3 months before I discovered my black massed bitch tit.

So here are my 2016 TOP 10 Stellar Moments (in no particular order):

  1. Living, loving, diving, laughing and cruising the world with my LOVE (heart bursts with gratitude & happiness thinking about our adventures!!)
  2. Swimming in Jellyfish Lake and the aerial plane ride over Palau
  3. Holding my Mumma’s hand along with my Bro feeling so proud of her for climbing Sydney Harbour Bridge for her 60th Birthday
  4. Surviving the very challenging Red Snapper Spawning Dive in Palau where the current was absolutely ripping & where I saw the biggest (and only) Bull Shark I’ve ever seen
  5. Spending time with my Brother from NYC – my inspiration & friend- twice in 1 year when we weren’t expecting to see each other until who knew when….
  6. Seeing my 2nd ever Hammerhead shark on our final epic dive in Tubbataha & the Whaleshark
  7. Watching my Sisters &  Brother each kick massive career goals and receive promotions, and accolades which only create pure pride, inspiration and admiration within
  8. Watching many close girlfriends grow into powerful, selfless, loving mothers
  9. Finding a personal inner strength I didn’t know existed
  10. B A L I wedding celebrations for two of my favourites (and the amazing Manta Dive at manta Point ….siiiiiick!!)

There was a new moon on Thursday 29th so for the past few days I’ve been particularly reflective as new moons are a period where we can focus on manifesting new beginnings and set positive intentions. My mind has been really active over the past few weeks. I have managed to let go of all of the IVF struggles,  the possible loss of my fertility, and the looming double mastectomy surgery worries yet have been holding onto far less important issues which have been doing my head in. I’m worrying about what career will I have, how will I generate an income, will we be able to afford to stay in Sydney…. All the bullshit and stupid worries that I’m disappointed to even admit especially in the schemes of everything else that happening and has happened.

So Universe, New Moon, New Year, Please provide me a positive clean- mental – slate….minus all the above mentioned shit and let me focus on my own HEALING and keeping faith that there will be a bloody amazing reason why all of this has happened. Even if I can help one person who will one day go through what I’m experiencing, then that will be enough for me.

This year the champagne bubbles will be replaced with mineral ones, the hair won’t be blow dried and wild, nor will there be a ghastly hangover to nurse tomorrow, but believe you me, I’ll be making up for it this time next year with one Rad Celebration and an even longer list of Stellar Moments to treasure! One of them being : Beating Breast Cancer.

Sun, Salt & Side Effects

I’m reclined outside on our new black & white bean bags, watching the last rays of the day stream through the palm & gum trees, listening to the cicadas, feeling the cool breeze provide some relief from the scorcher of a day. Sweet baby Jane, there’s nothing like the wind in your hair (I mean, head scarf) to make you feel really alive!

My head scarf comes off. The air that blows through the minuscule hair that still scarcely cling to my head feels like it’s weaving through a maze, sending sensational feeling across my soon -to- be skin head, giving me shivers down my spine. Or perhaps that was the result of the baby huntsman I just found in my head scarf?  GAAAAHHHH!!!!! Bush living benefits. And yeah, sarcasm loaded.

Minus the spider, taking my head scarf off (happens a lot over the course of a day) is one of my favourite moments. It’s comparable to that feeling after a big night when you take your heels off and let you swollen chubby feet free from the stiletto shackles, or the satisfaction found in showering off a sweaty stinky workout, or that undeniable relief when you undo your bra which is too tight and cuts into the not- so -attractive back flab bit of your back. Yep, It’s bloody fabulous.

So today my head scarf is off for the ‘Everyday photo’.  I’m documenting my breast cancer  ‘journey’. Thanks to the array of reality TV shows that overuse this expression I’m quite reluctant to use it myself. But technically the word should suggest some sort of profound transformation to a more enlightened state of mind so I’m rolling with it. For now, due to a lack of a better word for it, and admittedly coz I just can’t be fucked finding another one in my chemo thick head, it’ll do.

I want to take one photo everyday to make a compilation of images over the course of my treatment. My blog is an expression of my emotional/mental/ internal journey so I wanted to also put together in a visual slide that documents my physical ‘transformation‘ (replacement word found after quick google) or perhaps more appropriately put, my ‘deterioration’ which I am beginning to witness.

I remind myself of a little fragile fledgling. I catch my reflection in the computer screen now and then of  my wispy balding- patchy head with scarce hair still hanging on by a thread,  and it’s sometimes an emotional reminder of my sometimes forgotten reality. Seeing my pale white mug this evening and heavy set eyes ruffles my feathers more than I’d like to admit. I look sick. I feel sick.

short-and-curlies

I was at the hospital half the day having my third dose/cycle/round of AC chemo combination. I felt a bit of dread this time round because there’s been a bit of a pattern from the first 2 cycles develop over the past month. I know now not to make any plans for 4-5 days post chemo as basically I feel rat shit.

Round 1 (14 days)- I was cocky and confident thinking my youth and ironically ‘health’ would help me solider through it as I didn’t really suffer any severe side effects, just the standard fatigue, the odd mouth sore and dry mouth. I was running and following a relatively normal life minus the oncologist appointments and chemo chemicals pumping through my veins.Oh and of course hair loss right on day 14.

Round 2 (14 days) was more significant, with the first hints of nausea and a lot more fatigue setting in for longer and heavier periods of time. Headaches and aching body of a night were common and “chemo brain” definitely making a daily appearance, where often I’d be mid conversation and forget what I was talking about. Having a port-a-cath inserted too meant I’ve been sensitive from that surgical procedure where they put the device under my skin. It’s purpose is to provide easy access to my veins as the ones on my fore arms aren’t ‘good enough’ to withstand the numerous amounts of needles that I’ll need over the next 4 months. So this new addition to my body will be in place until treatment finishes. The chords and extras are only added on chemo days, otherwise it just looks like a disk in my chest. I squirm thinking about it, let alone seeing or touching it.

So today was Round 3, the start of my 5th week being a chemo patient. Still feels weird and surreal to type and say out loud. I’m hoping there aren’t any new spanners in the works in the form of any new crazy side effects. I mean, afternoon fatigue induced kips where I wake in what might be a pool of sweat or perhaps saliva drool (mm sexy hey),  is at least still manageable with a sun & salt fix ocean swim or bean bag mung under the trees to get me temporarily back on track until the next wave of fatigue rolls in (or surprise spider heart attack occurs).

And I guess despite feeling pretty awful from the toxic shit floating around my blood stream that’s hopefully kicking the shit out of cancer, ironically I feel cleansed when I’m outside. The healing powers of mother nature never cease to amaze me, but that’s another post all together…

So one’s things for sure, as long as the sun is out, the ocean is salty and the huntsman spiders are spawning, I wont be letting the chemo side effects have me by the short and curlies, tucked away inside with my life and summer tan on hold.

Stuck between a Rock and a Bald Place

I’ve been teasing my man for a few years now, betting him $50 that one day he’ll be sporting the old Friar Tuck look as his hair loss slowly increases. As it turns out, Karma’s a bitch as I’ve awaited my own imminent hair loss over the past week.

I’ve been stuck between a rock and bald place every time I looked in the mirror, or brushed my hair, or lifted my head from the pillow.

Prior to my breast cancer diagnosis, the words chemo & cancer went hand in hand with hair loss. Images of bald heads and eyebrow-less faces would come to mind symbolising a sinister battle ahead. One of the many things that I’ve learned over the past 8 weeks is that this was a naive misconception as not all types of chemo means that you’ll be lose your hair. However in my case, I was told straight up that I would have temporary complete hair loss during the course of my 5 month Chemo treatment.

This side effect is due to the chemo combination that I’m having : AC  (A – Adriamycin (doxorubicin) C – Cyclophosphamide) . It’s an aggressive grade 3 cancer so they’re treating it aggressively so I’m having a dense dose every 2 weeks for 4 cycles, rather than the usual dose every 3 weeks.So 2 months of AC Chemo.

After this I continue with another type of chemo (sorry memory deceives me right now – seems to be a common occurrence of chemo brain) for 12 cycles every week. So 3 months of this chemo too.

16 cycles in total. 5 months. 150 days ish. 16 days down, 134 days to go!

The oncologists and nurses said my hair should start falling out between week 2-4, so right on cue, Day 14 the chunks started shedding.

Waiting for the “effects” to kick in kinda killed me. I was so sick of pulling out clumps of hair whenever I attempted to put it back in a pony tail, or to wash it in the shower. Making abstract Hair Tile Art is fun for about 2 mins. Vacuuming hair balls from the floor and carpet ain’t so much. Nor is the feeling of an itchy sore scalp as the hair falls onto my pillow during the night. It was time. So the Shave & Champagne Celebration was set for Saturday 17th!

I won’t lie, I was nervous of course. I was nervous about how I would feel afterwards. Until this point I hadn’t really felt like a “cancer patient.” Yeah sure I’d been to dozens of appointments, had many tests, many tears, and of course had two cycles of chemo, but the reality of it all hadn’t really sunk in completely.

Over the past few months I have had to let go of so much control. And it’s been really bloody challenging as I’m a planner, someone who likes taking control and making things happen. So losing this power (did I ever really even have this power or did I just  think I did?) has been hard. No control over my test results, No control over whether my body will respond to chemo, No control over how many embryo’s I would have to freeze, No control over whether the cancer has reached my lymph nodes, No control over my future…

… Well Fuck you cancer, I’ve actually still got the most powerful & important form of control and that’s how I choose to react to this shitty situation.

So with my imminent hair loss approaching at a rapid speed, the solution was simple:

$20 Remington Shave Kit + Champagne + Loved ones for support

Tunes were on, tears were shed, laughs were had and with that the buzz cut was cut! Seany was my absolute rock as usual, so was the obvious lead shaver dominating the undercut, mini pixie Mohawk and the final hair do which was a Number 1 shave.

As soon as it was done I sobbed as I held onto Sean as I let go of the anxiety, pain, and I guess, grief of what I’ve experienced and will continue to face over the next few months.

The release was liberating.

Today as I write this post, what was kind -of -a cute pixie hair cut is now a balding patchy mess which is a physical, and  confronting reminder of my “illness.” But more importantly it’s actually a reminder that my hair, and also breasts which will ultimately be removed, don’t define me or make me, me.