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.

IMG_0531

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.

IMG_0558

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.

 

 

 

chemo – the end is just the beginning

You know that feeling when you get a hair stuck at the back of your throat? Your body goes into gag reflex mode and you stick your tongue out like a cat coughing up a fur ball? Well that’s my morning wrapped up in one unattractive image.  What’s worse than the stubborn strand of hair lodged in my throat, is knowing that it isn’t actually mine! Being bald should at least have some benefits but in this instance, it certainly isn’t the case.

And to really add fuel to the fire, I’ve also had a chronic case of  ‘chemo mouth’  for the past week which leaves me with this really rank taste/flavour in my mouth and on my tongue. (sorry sounds really gross, because it is.) I can brush and mouthwash until the cows come home, but it still lingers which leaves me gaaa haa-ing all day.

Taste changes are common side effects of chemotherapy which often leaves a metallic taste in peoples mouth and often patients become disinterested in food. Having been aware of this side effect before commencing my own treatment, I just couldn’t imagine anything stopping me from eating. And funnily enough, I was right.

Where most patients taste buds can’t tell Arthur from Marthur and are so off that they can’t even eat, my taste buds are in full force welcoming everything and anything in an attempt to rid my mouth of this awful taste. Soda water + lemon are a winner, as are avocados, scrambled eggs and to my naturopaths dismay, buttery toast. I mean if Cancer can’t kill me, a few carbs surely wont. This feeding frenzy is in vain though, as the bad taste returns pretty much right after I’ve eaten. It’s like when you’re super hungover and crave everything under the sun but nothing actually suffices your booze soaked body and then all you’re left with is a bloated -worse-for-wear belly to deal with.

I had an expectation that chemo gets easier as time goes on. But I was wrong. Chemotherapy is cumulative. It actually stays in your system for up to 12 months with some side effects, such as fatigue lingering longer than desired. Hopefully that wont be the case for me. With each chemo session,  the side effects intensify so as time goes on, and as I near closer to the finishing line, the side effects are  more likely to occur to a greater degree. So even though its been weeks since I’ve suffered chemo mouth, it’s no shock that it’s come back with a vengeance.

I am literally 4 days away from completing my very last chemo session.  I’ve completed 15 out of 16 sessions. That’s 19 out of 20 weeks worth of systemic treatment. As of next Tuesday April 18 that will be 5 months done and dusted. I actually can’t believe it. At the start of this journey there’s no way in hell that I would have imagined feeling this ambivalent at this point in time.

Before I started chemo, I had read blogs and personal stories of “survivors” who on completion of chemo treatment had actually felt anxious and apprehensive as they finished up their final session. At the time I vividly remember thinking “as if you’d feel like that!” imaging that I’d be full of excitement wanting to celebrate and party.

But these ambivalent feelings do in fact resonate strongly right now. It’s confusing because I’ve crossed off each session with such pride and excitement and now that I’m 4 days out from reaching what has been my ultimate goal for the past 5 months, I’m actually at odds with how I  feel.

Is it separation anxiety from my medical team that scares me? Or is it being worried that I might not perhaps have a sense of purpose now that my weekly appointments won’t be scheduled? Or am I worried that I wont have an excuse to fall back on if I’m not ready to jump straight into ‘normal’ life with guns blazing once treatment ends?

Perhaps these feelings are due to the expectation that things will just go back to ‘normal.’ Someone the other day made the presumption that my blog will obviously finish now that chemo is coming to an end. What will you write about now they said, as if the cancer conundrum comes to an abrupt halt once chemo finishes. Well it doesn’t unfortunately.

I guess it’s the presumption that chemo signals the end of the cancer journey that perplexes me because if anything I feel that the end is actually just the beginning. Its the beginning of the next few stages of treatment which will bring new physical challenges and a need to re-wire my mind to focus on the next milestone: Surgery.

I might be close to completing Part 1 of treatment but there’s still Part 2 (surgery & recon), 3 (possible radiation) and 4 (IVF in a year or two) to still face which may present to be the most emotional of them all. Maybe that’s why I’m not shouting from the tree tops just yet knowing that I have a couple of tough hurdles to still overcome. I guess these anxious nerves have been laying dormant as I’ve had chemo to shield behind but soon I guess this won’t be the case. But I’ve surprised myself with how I feel right now, so who knows what Tuesday will bring.

the breast is yet to come

Monday was a milestone for me as it marked the half way point for my Chemo treatment!! 10 Weeks down and 10 to go!!

The celebration was indeed welcomed but unfortunately, quite short lived. I was out of chemo at 3.30pm after another long day 6 hours in the chair, to then be greeted at 9pm with horrific nausea. It certainly wasn’t a pleasant night to be frank. I was sick as dog, hating life, cancer, and the vomiting of course. It was awful. Perhaps I’d been too cocky thinking that I’d escaped scott free after a few weeks of feeling pretty good since changing drugs? Silly girl. I guess the chemo felt it had to reassert some authority over my body in the form of night sweats and vom voms. Heck, it certainly made a statement that’s for sure. The $2 pink bucket from Bunnings that I had purchased for nights like these, performed pretty well that night saving the bed linen and carpet from the spontaneous chunders.

Yeah sure these nights suck and this side effect is properly fucked, but at least I know that the chemo is working as my tumour has shrunk. This reality makes these dreadful nights bearable. And if it means I have to continue like this for 10 more weeks in order to rid my body of this ‘disease’ (still feels weird thinking I’m someone who falls under this category as a carrier of such), then so be it.

In light of last week’s scan results which revealed that my tumour has in fact shrunk, people’s response to this has been quite interesting in that many people have presumed  that my chemo treatment is now complete. Many think that that’s it, I’m cured, tumour(s) have gone and that’s the end of my ‘ordeal’. If only.

There are still many steps to go: 10 weeks of chemo still (hoping we can stay on track for weekly sessions), a minimum 4 week break between finishing chemo and having surgery (we’ll need to ensure that my body is healthy and strong enough to withstand the massive operation that is a double mastectomy), then another 4 week break before possible daily radiation therapy which will be for about 6 weeks. So the earliest date right now for the end of treatment is around the start of August, if I’m lucky. And that’s of course hoping everything goes to plan. This is also subject to the type of surgery I decide to have which I’m very very confused about since my last post as I’m hearing mixed reviews about whether to have a one stage reconstruction or a two stage double mastectomy/ reconstruction which can be over the course of a 3-6 month period. There are many different pros and cons for both options so I’ll revert back to this in another blog post as it’s too complex, confusing and overwhelming for me to think about.

I guess perhaps prior to my own diagnosis I was just as naive about the multiple steps involved with cancer treatment and just how complex it can be from case to case as there is no one standard linear way – its complex and subjective from patient to patient. I certainly don’t hold it against anyone who has made an obvious presumption about my chemo treatment ending because of my shrunken tumour. It’s easy to forgot that the main purpose of chemo is to prevent recurrence. Considering I’m a BRAC1 & basically a triple negative cancer means that this risk is much greater, hence why chemo is so essential in my case. So frying the bastard cancer cells continues to prevent future recurrence and metastasis. This word haunts me beyond belief. If I can eradicate it from my life now, then I welcome this double dense dose of chemo any old day. We also don’t know whether the cancer is in the lymph nodes so that’s another reason chemo must continue in order to slaughter the cancer cells that may be present there.

So right now I’m on Paclitaxel (Taxol) and Carboplatin (Carbo). The first kind of chemo drug Taxol is common for breast caner patients and the latter, Carbo is more specific for breast cancer patients who carry the BRAC1 mutation as it seems to be effective to reduce recurrence.  Unfortunately, chemotherapy drugs do not know the difference between cancerous cells and the normal cells which is obviously why the pink Bunnings bucket has been getting a beating.

The major type of normal cells that suffer from the harsh effects of chemo are the blood cells, so it was no surprise today when my oncologist advised me that my hemoglobin (red blood) and neutrophils (white blood) cells are low. Red blood cells carry oxygen and nutrients throughout the body so the fact these are low doesn’t surprise me as I’ve been feeling light headed and experiencing dizzy spells. I’m bordering on anemic too which means I need to increase my iron intake. Medium – rare rump steak, please.

Neutrophils (white blood cells) fight infection, so the fact mine are considerably low means that my immune system is weak and that I’m at a high risk of getting an infection.

screen-shot-2017-02-16-at-5-22-15-am

Poor Seany has been booted out of bed and quarantined in our spare room tonight as he’s coughing and splattering about the place. I’m not allowed on trains, planes or even at cinemas as these kind of environments are incubators for germs so I’ve had to pass up one of my fave past times which is going Hans-Solo to the movies with me, myself, and a massive tub of popcorn. Netflix will have to do for now.

My oncologist wasn’t surprised or concerned about my lowered blood count just yet, as she had advised me that Taxol and Carbo reduce the immune system on their own accord, so combine both and it’s a recipe for a reduced blood bone marrow count overall. And especially that I am on a dense weekly dose. She is determined to keep me on my Monday weekly chemo sessions, which I’m happy about. I like her, she can appear as a hard bitch. With this in mind, she said that if my Sunday morning blood test results come in on Monday and show that my blood count is still really low , there is a great possibility that the nurses will refuse to hook me up to chemo out of fear that my body is too weak. She is adamant for them to call her so she can authorize them to proceed with the chemo despite it appearing very risky to pump more chemicals into an already depleted body. It will just mean I will need to have daily booster injections for 3-4 days after chemo to stimulate white blood cells in the bone marrow to help me fight off infection and to basically, just  battle on.

I’ve gone through the IVF process of needing to inject myself to increase egg stimulation, so I’m not phased in the slightest about having to self inject – it’ll beat having to drive to Royal North Shore Hospital on a daily basis which is a 1.5 – 2 hrs round trip!

So my mission right now is to stay as healthy as possible so I can stay on track. Despite the fact that I’m not allowed to take too much Vitamin C as it can be counteractive to the chemo, or that I’ve got not one nasal hair left in my nose to act as a protective barrier to stop pathogens and bacteria from weakening my already lowered immune system, I’m feeling relatively good right now considering. So right now my two main goals right now are :

  1. Continue to smash fresh beetroot, ginger and wheat grass juices, consume copious amounts of fresh leafy green veggies and of course will eat lots of protein to iron out this anemic predicament

2. Figure out what the hell I am going to decide to do for surgery – one stage or two stage double mastectomy?

 

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.

jumping-with-joy