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.

IMG_0578
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.

IMG_0531

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

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

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

Sunday – Day 5 Post Surgery

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

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

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

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

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

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

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

But I moved forward.

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

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

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

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

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

IMG_0558

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

NOW

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

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

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

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

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

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

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

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