Breasts or No Breasts – what will it be Doctor?

It’s been two weeks since I last wrote a blog post, and I assure you, during that time there’s been far more happening than I’ll be able to share in this one post. I wish I could say that I’ve been busy buying shares in Clindamycin or Kleenex, as in hindsight that would have been a smart idea.

It’s also been two weeks ago yesterday, that I received the dreaded phone call from my surgeon which left me with only a day to process two options before my final surgery which had been finalized for the Tuesday, instead of the Friday: I either walked away with tissue expanders or I left hospital breast-less.

It was a Monday. Surgery was booked for the next day. I spent that whole day crying and convulsing, feeling dumbstruck with disbelief. I was exhausted: emotionally drained and physically knackered. I had endured pain, discomfort and mental trauma (which I’m still feeling the weight of) so to then be faced with the real prospect of having my 5th surgery in 14 days to possibly wake with no result – just skin flaps as breasts, was heartbreaking. I was devastated. It would be temporary for 3-6 months, but at the time this didn’t matter – it was just such a disappointing and overwhelming possibility to process. I had only that day to prepare but I couldn’t stop crying, it was uncontrollable.

The deciding factor for surgery all came down to blood test results, which wouldn’t be in until an hour before surgery the next day. If my white blood count was high enough, then my surgeon would give my body one last chance and put the tissue expanders in with the hope that there would be no more fever or infection. I had a white blood cell booster injection to try and help make this happen. If the levels weren’t right, then the alternative was to walk away deflated, in more ways than one.

Just to clarify, Tissue expanders are temporary before being replaced with permanent breast implants after about 3-6 months. In a crude, quick explanation they are like deflated balloons that are filled with saline over time with the intention to stretch the skin to the desired size of the final implant. Because I originally had implants put in, and then taken out due to an unknown infection at the time, my skin shriveled in size. This may have been due to the V.A.C VeraFlo too. Hence the reason why I couldn’t just have implants put straight back in as they wouldn’t fit. Reconstruction after a mastectomy isn’t as linear as some may think.

How was I to process being breast-less after the awful and painful experience of the V.A.C VeraFlo Vac Therapy? Why did I need to be tested further, hadn’t been hooked up to those torture flush tubes been enough? Hadn’t I already been put through the mill with a cancer diagnosis and chemo for the past 7 months? Self pity was well and truly present.

Wasn’t Surgery & reconstruction supposed to be the easy, problem-free element to this cancer-conundrum? It was supposed be Surgery followed by 6 week recovery and then Life should be back on track right? But there I was possibly facing another 3-6months of being breast-less, which would then require another surgery to put the tissue expanders in to stretch the skin for at least 3-6 months, which would then make room for permanent implants which would require another surgery and 6 week recovery. I was looking at another 6-12 months of an ordeal that I was desperate to see the end of.

The tough part was the fact I wouldn’t be able to find out until just before surgery what my path would be, so trying to figure out how to evenly distribute my energy to prepare was difficult. I spoke to a psychologist that afternoon via a phone call consult which helped. I’d like to say that I’ve been relatively positive throughout this whole experience as it’s a lot easier than focusing on the shit reality of it all, but that Monday was hard. I was too scared to invest too much into the tissue expander option because if my blood results went against me then I feared that if that expectation wasn’t met then I’d be too low to bounce back. So I prepared for the worst. My cup of tea is normally half full, but this one time if was half empty. I felt vulnerable and had to protect myself after what seemed like a couple of disappointments already.

Despite knowing how much I cried on that Monday, I still think I out did myself on the Tuesday morning when my surgeon announced that we’d be going ahead with the tissue expanders. I get emotional now just thinking about it. I was shocked. She was quick to remind me that I’d be weeks away before being in the clear, but there was no way that could stop my tsunami of tears, feelings of relief and gratitude.

I now understand the meaning of joy. This was the moment when I woke from surgery with my little deflated balloon boobs and only one cannula and one tube attached to me. I had breasts and I was free. I was no longer suffering the intense suction pressure from the V.A.C VeraFlo Therapy nor was I attached to its torture tubes. Sure, I had two surgical drains coming out from below my breasts but these were so easy in comparison – I just put them in a canvas bag and could carry them around over my shoulder.

I was able to walk to the bathroom by myself. Instead of sitting having a ‘bird bath’, I  could shower properly for the first time in 2 weeks. The drains are made from plastic and are easily dried with a towel. The water over my fast growing head of hair was bliss. My boobs were certainly not your typical looking breasts, but to me they were the most beautiful things.

I just thank my lucky stars, my angels and my body for making it happen.

I had my first saline fill on Friday, so they are even more beautiful and now actually look more like real breasts – the dents have been filled out with the saline and they are round and plump. My surgeon filled them in her clinic in a painless 5 minutes procedure which required a large syringe of saline and a magnet to line up the valve where the needle inserts.

What was supposed to be a 3-5 night stay in hospital for my nipple -sparing- bilateral mastectomy -direct- to -implant surgery, ended up turning into a 3 week stay.

I am home now, recovering slowly. I’m awake typing at 345am as its uncomfortable to sleep as I still can’t lay on my side or stomach. It’s been 4 weeks since my first surgery so 4 weeks sleeping on my back gets a bit old and bloody annoying after awhile. And it’s been 2 weeks since my last operation so I’m still sensitive and sore. IMG_0737

But I’m trying to wean myself off the drowsy pain killers which would consequently assist with sleep, but the lack of these drugs seem to be making it harder for my body to rest so maybe it’s too soon?

Funnily enough during the day I can’t get enough sleep. But come 3am, bang! I’m wide awake and uncomfortable. It’s probably my poor liver working over drive trying to filter out all the toxic crap from the antibiotics (which I’m on for 6 weeks) and heavy pain medication that’s still being pumped through my body. My body is fatigued, out of whack. I feel constantly hungover as if I’ve had a bender. It was the same during chemo treatment. Pretty shit I say as it’s the hangover without the party. No fun in that. 5 anesthetics in 14 days will do that to it too I guess. And combine that with the cumulative effects of 5 months of dense dose chemo and it’s no doubt I feel the way I do. The chemo certainly took a toll on my poor body and immune system which as it happens ended up being the underlying cause of all these post surgery complications.

But I withdraw from the painful memories of my surgeries and lay focus on the fact that I’m Cancer Free. I’m Cancer Free because of the Chemo. Yes, it also wrecked havoc on lots of healthy cells too but it achieved it’s purpose by ridding my body of the cancerous tumors that threatened my life.

And Yes, the chemo reduced my immune system compromising it against the smallest of bugs and infections which it would normally be able to fight off easily which ultimately caused the traumatic complications. But It cured me of Cancer.

Perhaps my medical team and I hadn’t envisioned this non linear surgery path, nor the total impact chemo would have on my young 31 year old immune system when recovering from surgery. But despite chemo creating the horrific hospital experience I endured, it cured me of cancer making it absolutely worth it. Despite feeling weak, that vulnerability and fear made me stronger. If experiencing that meant I’d be cancer free I’d do it over again in a heart beat.

 

 

Another roadblock in complicated path to recovery

I had my 4th Surgery in 10 days yesterday,  But it wasn’t at all the surgery I had spent the past week preparing for, counting down every uncomfortable minute to reach. Instead of taking a significant step forward to recovery, I’m literally now 2 steps backwards (attached to 4 machines on 2 IV poles, accompanied by a nurse for assistance). And I’m in disbelief about it, trying to gather the strength I need to persevere and accept this new roadblock that impedes my progress.

Surgery had been booked for 1pm yesterday and the plan was to remove the VeraFlo Foam and replace them with tissue expanders as temporary breasts for 6 months until I’d have implants inserted. These expanders would lead me to recovery, a place where I should have been back on June 6.

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VeraFlo Foam that is currently inside each breast cavity

I can’t really articulate the discomfort that I’ve endured this past week. The pain & pressure is relentless, and due to basically being bed bound, it’s causing problems with my neck, shoulders and back. The spasms are agonizing and seem resistant to the pain relief oxycodene that I’m on. I’m not allowed to take any other pain relief as they’re blood thinners. So I put up with it by using hot packs and bossily asking my boyfriend to try and work the knots out by massage.

The Vac Therapy sucks at my breasts pulling my nipples inwards as if about to implode. Sitting up in bed is an achievement. Going to the toilet is a mission. Having my morning “bird bath” involves the assistance of a nurse or family/visitor. I actually consider this an outing for the day and feel proud of myself for being able to sit on a chair and wash myself with cloths. Unplugging the chords of the 4 machines that I’m connected to 24/7 also involves untangling the endless tubes attached to me and the IV poles. Its a constant battle that breeds continued frustration, if you let it. This week has tested me on so many levels and it appears that for some baffling reason, that’s not enough.

 

I woke yesterday with the feeling of being at my wits end, having said to my brother “I can’t do another minute being attached to these vac machines, I’m done.” I was at the height of irritation and defeat. I was emotional and over it. I was simply looking forward to heading into what I thought would be my last surgery for a while and returning chord/tube free and having 3/4 filled expanders as breasts.

Since hanging up from him, my temperature spiked and I had an episode in the bathroom, with blood pressure dropping and body almost falling by fainting. Suffocated by oxygen, the nurses performed blood tests and a chest x-ray from bed, leaving me to sleep.

My Surgeon came to see me, by which time I had slept off my slight fever and felt ready for the operation.

She took one look at me and said there’s no way expanders are going in. I was too unwell. I couldn’t believe it. I was absolutely shocked. Gutted. I was simply devastated that after a mammoth week of enduring the most physically and mentally challenging experience, that now I was being told I couldn’t achieve what I had worked so hard to try and get. It was another massive anti climax and let down.

What was worse, was that we had to operate anyway as the foam needed to be replaced or taken out so surgery was still going ahead in half an hour.

My surgeon presented me 2 options:

  1. Remove Foam, & replace.
    This would mean that I would need to do another 3-6 days of cleansing attached to the VeraFlo Therapy machines. The next step would be surgery on Tuesday to either replace foam or put in expanders. It would be subject to my health. If I was slightly unwell again, foam would stay until Friday and expanders inserted then. But she made it clear that I need to prepare myself that expanders might not be accepted by my body and I’ll end up with nothing anyway for 3-6months until I heal and we can look at reconstruction then
  2. Remove Foam, & leave nothing.
    Keep breasts empty, loose and free from expander for 3-6 months with the intention to give my body time to heal and recover before reconstruction.

My body has been traumatized over the past 8 months with chemo and now with these 4 surgeries. It will be 6 surgeries, over 3 weeks by the time I leave the hospital. And this might just be the reason behind these fevers, its as if my body is telling me enough is enough. It’s struggling to fight off the smallest of possible bugs, which yesterday was an indicator of.

The fact my first surgery on May 22 was delayed due to low blood count, even though it was 6 weeks since I had finished my last chemo session, just goes to show the extent of the damage chemo has had on my poor body . I’m Cancer Free so putting up with this traumatic experience is worth it over and over.

So I had 2 options. Both unappealing. Both options were just the last thing I wanted or could imagine being able to handle right now. Option 1) seemed like the most impossible. The finishing line has been moved again. How could I conjure the strength to endure another week of what I’ve just overcome? I was at my wits end, irritated, frustrated, imprisoned. How could I do another 3 days of this agony, let alone possibly 6? And then at the end of the 6 days be faced with the real possibility that my body might just reject the expander and I’d end up with nothing in there anyway?

If I decided to give up on the pain and frustration of it all and just take option 2) of removing foam and cutting my losses and leaving nothing in there for 3-6 months, then I know I’d regret not trying. My partner reminded me that in a day or two, I might be free from the chords and vac machines with an empty chest and chance to be at home, but I’d be full of even more frustration for not giving it a chance. He knows how much I want these expanders and despite the discomfort I’m currently in, how much I’ll regret not pushing through. 3-6 days could prevent being breast-less for 3-6 months.

The idea of being empty and flat chested is awful. No woman wants to have that , well I’d imagine most. Of course if I need to experience this then I will have to endure it. But I really hope the next 3-6 uncomfortable days putting up with this Vacuum therapy is worth it, and not in vain.

 

 

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.

 

 

 

The Power of Papaya: increased platelets

As of June 6 which is this coming Tuesday, gravity will no longer be an enemy, bras will be optional and the possibility of breast tumors, will basically be nil. Well, hopefully. That’s if my body & blood levels decide to play ball and not create anymore delays for surgery.

As per my last post which was nearly 2 weeks ago, my low platelets levels boycotted my double mastectomy which had been scheduled for Monday May 22. Initially it was an awful shock after so much prep and anticipation, but once I surrendered to the fact my body simply wasn’t ready, I felt calm and focused on one thing: to increase my platelet levels.

My daily mantra: nurture & nourish.

And that meant doing everything by the book with some serious calculated chowing taking place: I’ve smashed nearly 8kg of fresh papaya along with copious amounts of natural supplements including organic papaya leaf extract in capsule form, and I’ve drunk countless cups of Chinese herbal tea to nourish blood & ‘Qi’ (along with my acupuncture sessions of course).

I didn’t realize the power of papaya and it’s ability to increase platelet levels until a couple of thoughtful friends brought it to my attention. One in particular had a 10Kg delivery arrive at my house the day after surgery was cancelled. God love you Bee, thank you darling.

Studies at the Asian Institute of Science and Technology in Malaysia revealed that people who were suffering from low platelets from dengue fever, increased their platelet levels within days by consuming papaya leaf extract.

So with a similar comprised platelet level, surely consuming this natural remedy would also see my own levels increase right?

The first indicator to see whether my body was responding was the blood test I had last Monday 29th. The much anticipated results showed that my platelets had skyrocketed in a week, coming in hot from 56 to 132!

But of course, there’s no show without punch –  my white blood cells had in fact plummeted. My neutrophils had dropped significantly low, to levels as low as when I had been enduring weekly chemo sessions which I had finished 6 weeks ago. What. The . Fuck.

Give me a break, I thought.

Neutrophils fight bacterial infections, so due to the fact mine are low, I’m susceptible to germs and bugs with a comprised immune system. This isn’t ideal at all for surgery so my nurse arranged for me to collect some Filgistrim injections from the hospital the next day. These are booster shots I have given myself for the past 3 mornings and will continue to do so until Monday, in the hope that these little bastard neutrophils return to a healthy state.

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They say it takes up to 12 months for your body to fully bounce back from the side effects of chemo, and these low white blood count levels is evidence of my immune system having been utterly knocked around.

Rather than hanging out with my amazing brother who flew over from NYC to hang with me during what should have been post surgery recovery, I’m instead quarantined by myself with hand santizier and Vit c on hand due to the threat of a sore throat & blocked nose.

The next blood test is booked for Monday morning which will shed some light on my levels. Straight afterward, I have the Sentinal Lymph Node Mapping .This procedure involves injecting an isotype dye solution into the tumor site whereby the solution travels via the lymphatic system highlighting the specific lymph nodes most likely to contain cancer cells if any metastasis has occurred.

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So by the time surgery (hopefully!!!) takes place on Tuesday, surgeons can access the exact nodes that need to be removed for biopsy.

By the time I finish with the SLN mapping procedure, my blood test results should be in which will give me a good indication of my levels. As per my surgeons request, I’ll have a final blood test on the morning of surgery to determine whether I get the green light to go ahead with the removal of these tumor tainted bitchtits.

Universe, please make this be the 3rd last night that I have my own natural boobs. Sure, I’d prefer not to lose them and I won’t be shy in admitting how much I love them, but the shit they’ve put me through trumps these pretty lumps, and reasserts the fact that it’s time for them to go. I’m nervous and slightly anxious about surgery, but it’s been drawn out long enough now and I want it to happen already. So please, let it be.

 

 

 

 

 

 

Bye Bye Bitch Tit

I chose my new boobs on Friday. Hmm that’s a sentence I never thought I’d have to type. They are silicone teardrop implants and my surgeon recommends them as the best on the market, and the ones that will look most natural, and to my boyfriends dismay, non- porn star like. Sorry Seany, you won’t be getting the Double D’s you dreamed of.

In less than a fortnight I’ll be waking from a 4 hour surgery: Nipple Sparing Bilateral Mastectomy with immediate reconstruction. On Monday May 22 my bitchtits will be removed and replaced with new and improved cancer-free implants.

That’s my focus right now, the ‘cancer free’ part of this all. It’s easy to mourn the impending loss of my real natural boobs, but I just have to remind myself of the drama they’ve caused me, and the threat they pose to my life, and then that sadness quickly turns to relief. No breast tissue =  no cancer. (well hopefully)

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Deciding on having a double mastectomy was easy; i didn’t think twice about it. The statistics for recurrence were just too high. What was difficult was deciding on what kind of reconstruction to have. It was either immediate reconstruction with tissue expanders or with implants. I have read that if I have implants and then need radiotherapy then the skin might tighten and possibly misshape the implants. However my surgeon, who is also my plastic surgeon, is one of the best in Australia and has recommended that this traditional way of thinking doesn’t line up with the actual results. She is the expert and has seen many successful cases of implants after radiotherapy (RT) and reassures me that if I need to undergo RT then my implants should be fine. And for any reason they shift It’s an easy fix and will be the same amount of surgeries if I decided on the tissue expanders anyway. So immediate recon with implants it is!

Another perk is that I get to keep my own nipples! Sure I won’t have sensual feeling in them nor will I be able to breast feed, but that’s the least of my worries. There’s a small chance that the blood supply won’t successfully flow to the nipples which can result in them “falling off” (excuse my lack of medical terminology) but that’s what they literally do. I squirm at the thought. If this happens then there is an option down the track to have nipple tattooing, where they draw on areolas. I’m not going to entertain that as an option as I’m hoping my sweet nips are safe and secure and hang on tight during the procedure and recovery. So prayer for my nips! Another sentence I never thought I’d have to type.

During surgery they will remove the breast tissue and the sentinel node in my arm pit. These will be sent to pathology for testing where they will examine them to see if there are, or were, any cancerous cells. The full report takes a few days to receive. Chemo should have destroyed any cancer that was in the lymph nodes, and god forbid, any rouge refractive cells that might have moved throughout my body. If cancer is detected in either the breast tissue or lymph nodes then radiotherapy will definitely be recommended. This will be 5 days a week for 6 weeks. The idea of having to endure this process makes my toes curl so I’m hoping that my gut feeling that this won’t be needed, is on point.

I’ll be in hospital for about 5 days after the surgery and then will recover for 4-6 weeks at home. For the first 1-2 weeks a nurse will visit my home to empty the surgical drains that will be attached in order to drain any fluid and blood that can accumulate in the area where the tumours were.

During recovery I’ll receive the pathology results which take about 3-5 days. These results will be discussed by the Multi Disciplinary Team (MDT) who are looking after my ‘case’ which includes my oncologist and surgeon plus other medical professionals. The MDT is an integrated health care team that will collaboratively decide on the best possible treatment plan for my future subject to the lab report.

Originally my cancer was treated as a triple negative due to its aggressive nature and the weak estrogen positive reading. However, it has come to light that this weak positive reading is in fact 20%. In a crude explanation, this means that my cancer is fueled by 20% of estrogen which is produced by my body. Because of this fact it is highly likely that the MDT will recommend that I go on hormone therapy treatment for 5-10 years after surgery eg) estrogen blockers like tamoxifen. These blockers do exactly that, block the production of estrogen which can fuel the growth of my cancer. The purpose of this is to prevent recurrence. It’s  a lot more complicated and complex than how I’ve described it but that’s the gist of it. I’m still trying to get my head around it all as science was never my forte.

I’ll pay $50 to anyone who can find a positive review or a personal testimonial from a patient who has taken tamoxifen. Good luck. The idea of going on this and putting more shit in my body disturbs me so much, as does the idea of the loss of libido, weight gain and more hot flushes. The side effects are in fact parallel to those I have had from chemo for the past 6 months so the prospect of having them for an extended period of years just doesn’t float my boat … I do not want to go on this. But 20% is a huge statistic. Breast Cancer is a stats game for me it seems, so this amount is in fact a concern when I think about recurrence.

But I’m pushing that reality aside for now as it makes me anxious and emotional. I will address it when we have the pathology report and official confirmation of what my options are.

So right now, the one obvious option I’ve got is simple: focus on my impending surgery and to prepare myself to say bye bye Bitch Tit.

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.

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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.

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A Sweaty Sleepless Sunday

I just watched a very interesting segment on 60 minutes about a family’s ‘cancer curse’ as they so charmingly called it. I was expecting some kind of rare cancer to be discussed, but low and behold, it was the Breast Cancer ‘BRAC2’ gene mutation they were discussing. The timing of this is quite impeccable considering that I anxiously wait to meet my breast surgeon tomorrow to discuss my impending double mastectomy which is a result of my own faulty BRAC1 mutation. Not only this, but I also find out whether the chemo is actually working.

Tomorrow is a HUGE pivotal day for me, one that I’ve basically been waiting for since I was diagnosed over 3.5 months ago. Tomorrow the waiting game will be over to a degree in that I’ll finally have some answers.

Prior to my first surgery in Phuket we thought that there was just one large tumour however after surgery we were advised that there was in fact two tumours. For some reason, the small one was not removed. It was not until we arrived back in Sydney after I had a MRI and Scan that I was aware that this was the case. So 2.5months ago at the time of my scan the specialist inserted a small clip onto the tumour so that we could monitor its growth, or hopefully shrinkage, during the course of chemo treatment. So tomorrow is the day!

I just hope that is has shrunk, or even better, has disappeared. As long as it has not grown, then I’ll be as happy as Larry. Despite deep down knowing conventional chemo treatment is the right option for me as a 31 yr old  triple negative breast cancer patient, the mind still breeds doubt and questions it sometimes. The past 9 weeks of treatment has been really challenging on a mental level. Obviously chemo takes a toll on me physically, knocking me about from day to day, but it’s a real mental battle trying to outweigh the pros and cons of it all, that poses as the real issue. For a good 4-5 days post chemo I can smell and taste the toxic chemicals in the back of my throat and sinus which make me gag, and makes me wonder what the hell am I doing?  When I’m an emotional heap on the floor with a foggy bald heavy head, a dry revolting metallic tasting mouth, and have nausea rising in the pit of my tummy, it’s easy to wonder whether it’s all worth the pain. So tomorrow will be a great indicator of this.

How am I going to sleep tonight? If I thought the hot flushes kept me awake during the night, then I think tonight I’ve got another thing coming.

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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