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.

 

 

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.

 

 

 

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.

Double mastectomy & breast reconstruction : Tits not an easy decision

Jubblies, cans, knockers, hooters, tits, breast,bongos, melons, boobs, ta-ta’s… they come in all different shapes, sizes and names. And when it comes to deciding what type of surgery to choose in order to have these lovely lady lumps of mine removed, it’s no surprise that that these options differ just as much as well.

Breast cancer is tiring. It’s not the fatigue, the aching bones, sleepless nights, or long chemo sessions that I’m talking about. It’s the decision making that exhausts me. There are so many questions that need answering, and so many decisions that need to be made. And frankly, it can be a bit too much sometimes and you just want someone to tell you exactly what to do.

Having the BRAC 1 gene mutation isn’t awesome, but at least it helped me decide on a double mastectomy as it puts me in a 60-80% high- risk category of developing another breast cancer. If I have a double mastectomy then I will have no breast tissue left, meaning, that the chances of another tumour developing is pretty darn slim. What would seem to be one of the hardest decisions I would be faced with was in fact actually the easiest to make. I love a hand of poker now and then, but with the cards I’ve been dealt so far, I’m not that keen of a punter to decide otherwise. You don’t need to be Einstein to calculate the risk of those stats.

So that’s one decision made! And of course, the domino effect is that I’m now faced with yet another decision: what type of surgery do I choose? However, I’m feeling quite perplexed and apprehensive for a few reasons.

As you know, I’ve already had one surgery in Thailand. I decided to remove what I thought was a benign lump. In hindsight, perhaps I should have just had a biopsy, which would have possibly made my treatment and current situation perhaps a bit more straight -forward. But instead, I listened to 3 medical professionals who advised me that the lump wasn’t cancerous, and thus removal was best. There was no reason for me not to take their advice. I followed their suggestions and made what I thought was an educated decision. Wouldn’t you trust the professional opinions of 3 separate doctors?

I guess my faith has been tarnished a bit, and when I’m faced with going under the knife to have my beloved boobs removed, this is a concern and worry.

My trust has been compromised. This hasn’t really been helped by the fact that there have been a few mistakes made along the way since I’ve been back home in Sydney having treatment. For instance, firstly I had differing opinions about my pathology report and the actual type of cancer I have (triple negative vs. slightly Estrogen positive). Then there was the dilemma of conflicting treatment plans and confusion as to whether I would need to cough up $2000 per injection that I’d possibly need after chemo rounds which was later revealed to be incorrect information provided to me on behalf of the registrar. And then just yesterday, when I was at the hospital about to start chemo, I was informed that the reason I was so ill and nausea last week was due to the fact that the nurse didn’t give me the essential anti-nausea injection. She forgot. Initially I felt relief that this wasn’t going to be a weekly trend, but rather a one off mistake. At the time I was just thankful that moving forward I would get the injection at each session and thus avoid what seemed like a teenage passion pop fueled porcelain bowl party. But today it’s made me feel even more apprehensive about accepting medical opinions as gospel.

There seems to be human error presenting it self with small mistakes here and there which I understand can happen, but it’s not something that generates the kind of confidence I need right now when imaging my precious boobs being removed.

The 3 main options for my double mastectomy and reconstruction that I need to consider & ultimately decide on are:

  1. remain flat
  2. undergo reconstruction using my own body tissue (flap procedures)
  3. undergo reconstruction with implants : one- stage (immediate) or two-stage (delayed)

One decision I have made is that I want to feel whole. Complete. And this involves having breasts. So option 1 ) remain flat is not an option. My personal sense of womanhood and femininity involves having breasts, yes this is my individual sense of being. Breasts make up my womanhood – “my” being the operative word. I’m not saying that boobs are needed to make someone more or less of a woman or feminine, but they certainly contribute to my own identity, sexuality and is certainly weaved into my personal well-being.

From this stems further questions, do I have immediate or delayed reconstruction? Do I have saline or silicone implants? Or if I want to use my own tissue instead, do I use flesh from my tummy with a scar from hip to hip or do I use my inner thigh? hmmm both options actually sound pretty good considering the 5kg of beef I’ve packed on since starting chemo….

But then there’s the decision to be made as to whether I do a one or two stage surgery? Do I have implants right away or get tissue expanders and then have a second surgery for the implants to be inserted months later? Will my nodes be cleared? Or will I need radiation? Don’t they say that implants aren’t ideal as they can become tight and misshaped from radiation hence tissue expanders are preferable? But if I choose tissue expanders then do I really I want months of extra doctor appointments getting my tissue expanders ‘inflated’ with the chance that the nipples might be off centre? And then what if I wake with tissue expanders to find out my nodes are cleared and I don’t need radiation after all and could have just had a one- stage surgery with implants?

Questions, and doubts compounded on an already foggy chemo head is exhausting.

My amazing breast surgeon suggested that for reconstruction, my best option would be to use implants rather than using my own tissue. I agree with her. My gut and inner thigh flab can stay for now. Nothing a 10 Day Purium Transformation and 30 day Bikram yoga session won’t fix once I complete treatment.

Okay so I’ve ruled out option 1) and now also option 2).

So I know I want to undergo a double mastectomy with reconstruction with implants. But Do I want one-stage implants or two-stage surgery tissue expanders & then implants?

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Tissue expander vs. implant

Do I have a one – stage immediate breast reconstruction with a breast implant? This would involve having one more surgery where they check my lymph nodes, remove my whole breast tissues and replace the breast tissue immediately with an implant that is inserted under the chest muscle onto the chest wall. This is the most appealing option to me at this point. However my doubt lies in the idea of needing radiation with an implant. If my nodes contain cancer, then I will need radiation for 6 weeks on a daily basis. The traditional way of thinking has been that having radiation with an implant creates tighter skin around the implant which can be uncomfortably tight and  possibly misshape it.

There is also an 8% chance that my nipple may fall off if the blood supply doesn’t successfully function correctly. That means there’s a 92% chance of this not happening. These stats are good but still after a few blows it’s hard to ignore that figure 8…. Of course there’s options for nipple tattooing as a back up in case this happens but I really want to keep my own nipples.

And then there is the alternative surgery option of  a two- stage breast reconstruction with expanders & then breast implants. I would have my breast tissue removed, lymph nodes checked and then expanders inserted temporary. The expanders are designed to be periodically inflated with fluid over a period of months to stretch the skin and muscles and according to some surgeons are much more suitable in case one needs radiation. But what if I decide to do this, then wake up after surgery with deflated “balloons” to then find out I don’t need radiation at all because my nodes are clear?

As you’ve probably figured out by now, breast reconstruction after a double mastectomy is very different to a boob job or a standard augmentation.  A boob job is like adding some extra cushion to your cushion cover. Whereas Reconstruction is like removing a cushion from the cushion cover, making changes to the shape and size of the cushion cover and then adding in a whole new cushion. I’ve never been much of a seamstress so this is quite stressful.

With a breast reconstruction I will also need surgical drains for 2 weeks post surgery to filter out blood and puss like fluid from my chest wall. My surgeon described the fluids to be similar to that yellow scabby infection you get when you graze your knee. GAG!  So the drains will collect the fluid from the surgical area and deposit it into grenade like bulbs that will hang from drains at the side of my chest which I’ll need to empty throughout the day. This is awful to think about and makes my tummy churn.

It’s a massive surgery, one I’m not taking lightly. I’m making calls, I’m connecting with women who have experienced this first hand. I’m trying to gather as much information, personal experiences and medical advice as possible.

My breasts surgeon is amazing, She truly is. I’ve seen the before and after photos of many women whom she has performed incredible double mastectomy’s on and to be honest, the after photos are in fact more impressive than the before pics. She strongly believes that having a one -stage immediate breast reconstruction with implants and then possible radiation shouldn’t be a concern and does not pose sufficient risks to ignore. This is her recommendation. And she is one of the best plastic surgeons in Sydney.

I want to say Yes, lets do it. Let’s rock the one stage surgery, pump up the jam, and get these bad boys inserted! I want to put my faith in her expertise and experience and trust her opinion and those other professional colleagues of hers that also support the opinion that radiation shouldn’t alter my implants in the instance I need it.

However, I’d be lying if I said I was 100% confident in accepting this advice without further investigation and research, as this is the biggest and most confronting decision I’ve been faced with so far. I can’t yet help that ghastly doubt that keeps presenting its ugly face and I cant yet remove all the other small mistakes I’ve been faced with along the way.

So for now, my next step is to attend a reconstruction support information day next Tuesday. There I will listen to an array of breast and plastic surgeons (mine being one of them) describe each surgery option in further detail, and more importantly hear from women who have undergone each different surgery and share their experiences and lists of pros and cons.

I am trying to connect with as many other women who have been in my shoes, so will rack their brains (and boobs) for as much insight and information that I can in order to make my final decision as rock solid as my impending new additions.

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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