When they removed my breast tissue during the bilateral mastectomy, they tested the specimen and found that it was CANCER FREE. My heart sings just reading that out loud and despite daily thanks for this incredible blessing, I sometimes find myself still processing what just transpired over the past 9 months, thinking “did that just happen?”
But then there’s the Peripheral neuropathy (numbess) in my left toes; the fatigue; the faint but constant ringing in my ears; the unwelcomed facial fur that now lines my jaw (which is at least thankfully blonde); the low white blood count and immunity; and the saline filled Ta-Ta’s, all of which quickly remind me that the past 9 months did indeed happen.
When they removed my breast tissue during the bilateral mastectomy, they also found something unexpected: blood cells. Blood cells belong in bone marrow, not breast tissue. Apparently when bone marrow cells develop outside the medulla of the bone, its called Extramedullary Hematopoiesis or EMH.
My breast surgeon obviously wants to get to the bottom of what caused this EMH in the breast tissue before I have my exchange surgery. She needs to be able to rule this out in case that this was the actual problem that caused all post surgery complications last time, rather than it being due to my low immunity. Just a side note, the exchange surgery is when they take out my tissue expanders and replace them with permanent implants.
Due to the fact my breast surgeon who has performed 1000’s of surgeries/mastectomies hadn’t seen this before, she referred me to a specialist hematologist. He basically explained in a long winded and confusing way, that they weren’t 100% sure what caused the cell growth in my breast tissue. He basically put it down to 2 possible causes:
Malignancy in the bone marrow – metastatic cancer growth forcing other blood cells to move to other parts of body ie) breast tissue
Drug induced – possibly caused from Neupogen injections aka granulocyte colony-stimulating factor (GCFS) which stimulate blood cell growth
It’s amazing how flippantly he discussed option 1. I had imagined this possibility but hadn’t expected to hear it. My heart sank as I thought about my Grandad whose breast cancer metastasized to the bones, taking his life and also of my Uncle who died at 29 from Leukemia, which is a blood related cancer. Despite the fact Leukemia isn’t genetic nor is “metastatic” cancer, when you’re sitting in a Dr office hearing these possible causes, it’s hard not to think twice.
Luckily for me, the specialist thinks option 2 is the most likely suspect hence we’re not too concerned.
In this report it details 2 case studies of breast cancer patients who also had this EHM found in their mastectomy specimen post chemo, most notably after administration of granulocyte colony-stimulating factor (GCSF) which is what I’ve had dozens of times to help boost my white cell production to fight infection.
In order to be sure, they need to monitor my blood for next 12 months, ordering monthly blood tests. If there are any spikes or changes in the next 3 months, then I’ll have a bone marrow biopsy to really see what’s happening. But I don’t think this will eventuate as i’m also thinking it’s from the GCSF/Neupogen immune booster shots I had throughout chemo, and up until last week. Even two days ago my white blood cells were really low again. I finished chemo 3 months ago, but immune system is still fucked. But my oncologist has said no more Nuepogen booster shots – lets see how my body responds without the GCFS and hopefully it’ll slowly increase on it’s own.
I’m not investing any real concern as the medics team think it’s from the drugs I’ve been taking. But it would be nice to have it sorted with no more balls in the air, because despite best effort to control my mind, it can sometimes have a mind of its own.
So what now?
The exchange surgery is tentatively booked for early October, pending the next 2 monthly blood tests which my hematologist will review.
If all looks fine and my levels are A.O.K then surgery will proceed and I’ll have my permanent new tear drop implants & life can start to continue as normal with less Dr visits – only every 4 months for the next few years.
The alternative? If levels seem odd & EHM appears to still be an issue then hematologist will request a bone marrow biopsy to shed light on what’s going on. My surgery will be delayed as they need to be certain about what’s going on before they put me under the knife again.
But that won’t happen, I can feel it in my waters.
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.
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.
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.
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:
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
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.
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.
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 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.
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.
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.
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.
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.
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.
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.
Who would have thought that on the night before my double mastectomy I’d be waiting for blood test results and a phone call from my surgeon to determine whether I’ll be going under the knife tomorrow or not? Certainly not me.
I should be relaxed and ready; showered with the special surgical soap, hospital bag packed, beanie on, tucked up in bed. But no, instead I’m waiting for my phone to ring praying for my platelets levels to be where they need to be so I can undergo the double mastectomy that I’ve been amping myself up for for so long.
Platelets are a component of the blood in the bone marrow whose function is to stop bleeding by forming clots. And as of Friday, mine were half the amount they need to be. Certainly not ideal for a major surgery with the removal of large tissue like a double mastectomy.
Last Wednesday I went to the pre-admission clinic at the hospital to meet with the nurse, doctor, anesthetist and do pre-surgery tests which is common procedure for any major surgery. There I had a blood test which is what steam rolled my past few anxious days of waiting.
When the nurse called me on Friday advising that my platelets were super low, I was simply shattered. I was an emotional cot-case. It was an absolute head fuck. I was in shock finding this out two days before I’m due to have my breasts removed. I genuinely thought that someone must be having a laugh. It this for real? The platelet levels need to be around 100, but mine were only at 50. I raced to the hospital for another urgent blood test in hope that they had miraculously increased since 2 days ago.
The pathologist kindly fast tracked the results on the spot as she could see how anxious and upset I was. My platelets had increased, but only to 56. The chance of them increasing to 100 by Monday was extremely slim, she said. I was gutted and could not believe it.
There’s been months of psychological preparation for Monday May 22, with so much anticipation and emotional build up, so the idea that it might be jeopardized at the last minute because of low platelet levels, has been frustrating and upsetting. For the past few weeks I have done everything I can to try and support recovery from chemo as best as possible by eating clean, staying positive and ‘healthy’. Hearing of my low platelet levels was a complete left fielder. It was a shock especially when I’ve noticed a real shift in energy this week. However In hindsight the aching bones and muscles were perhaps tell tale signs of the struggle that’s currently happening within my poor bone marrow.
My first question to my surgeon was why don’t I just have a platelet transfusion? Surely I could have one on Saturday and Sunday to boost my levels right? Double dose me up for Monday? I’d had 2 blood transfusion during chemo treatment so instantly thought it would be an easy solution.
However my surgeon and oncologist soon burst that hopeful bubble explaining that a platelet transfusion isn’t really a good option in this scenario in that they are risky, can cause reactions and that platelets deplete too quickly so I’d need to have one on the day of surgery which is not ideal as they won’t last long.
My surgeon said it simply: “We’ve spent 6 months trying to save your life, so will not risk you bleeding out now.” With the potential for massive blood loss due to the large raw area in which the breast tissue will leave, It’s a no brainer. She will not operate unless levels are above 100.
As soon as I hung up I called my incredible acupuncturist and she slotted me in for an urgent session. Feeling like I could possibly make a difference and have a bit of control rather than waiting and wondering, I had an hour session where she focused on balancing my blood and stimulating regeneration.
I left with some not so delicious Chinese herbs that taste less like tea and more like a warm forest floor, so I’m clearly trying to do whatever I can to get these little platelets of mine up to scratch. After months of chemo mouth, this foul tea could be worse.
On the flip side of this situation, I guess having low platelets is a good thing to some degree as it indicates just how effective the chemo has been. Let’s hope the cancer has been hit just as hard as the platelets.
And there I was with my girlfriends today lunching and celebrating the “boob voyage” that very well might not happen. I received the most beautiful hamper full of thoughtful items that will help with recovery post op. Today was a reminder of just how lucky I am.
I had another blood test this morning and it’s these results that I’m now waiting on as I type this blog post up. My surgeon is due to call this evening to inform me as to whether i’ll be operated on tomorrow. Its 730pm.
But my guts leaning one way and regretfully I feel quite confident that I won’t be caught out for having not packed my bags for the scheduled 630am departure to the hospital tomorrow.
As expected, my surgeon has just called confirming that my levels are too low, just 64. Its 10pm on the Sunday night before my scheduled surgery and I’m not surprised but I still feel disappointed and quite deflated after a draining weekend.
Time to rewire my mind to redirect energy from loss of boobs towards platelet recovery. A flick of a switch would be handy right now.
I’m so grateful that my surgeon is an empathetic woman who understands the emotional roller coaster that this weekend had been for me. She has shifted some patients and has advised that the earliest available surgery slot is Tuesday June 6th, which is 2 weeks away and should be enough time for my body to be fully recovered.
Looks like I’ve got a shitload of Chinese forest floor tea to drink between now and then. But it beats my boobs bleeding out on the operating table any day. Bung that kettle on & prayer for the platelets!
You know that feeling when you get a hair stuck at the back of your throat? Your body goes into gag reflex mode and you stick your tongue out like a cat coughing up a fur ball? Well that’s my morning wrapped up in one unattractive image. What’s worse than the stubborn strand of hair lodged in my throat, is knowing that it isn’t actually mine! Being bald should at least have some benefits but in this instance, it certainly isn’t the case.
And to really add fuel to the fire, I’ve also had a chronic case of ‘chemo mouth’ for the past week which leaves me with this really rank taste/flavour in my mouth and on my tongue. (sorry sounds really gross, because it is.) I can brush and mouthwash until the cows come home, but it still lingers which leaves me gaaa haa-ing all day.
Taste changes are common side effects of chemotherapy which often leaves a metallic taste in peoples mouth and often patients become disinterested in food. Having been aware of this side effect before commencing my own treatment, I just couldn’t imagine anything stopping me from eating. And funnily enough, I was right.
Where most patients taste buds can’t tell Arthur from Marthur and are so off that they can’t even eat, my taste buds are in full force welcoming everything and anything in an attempt to rid my mouth of this awful taste. Soda water + lemon are a winner, as are avocados, scrambled eggs and to my naturopaths dismay, buttery toast. I mean if Cancer can’t kill me, a few carbs surely wont. This feeding frenzy is in vain though, as the bad taste returns pretty much right after I’ve eaten. It’s like when you’re super hungover and crave everything under the sun but nothing actually suffices your booze soaked body and then all you’re left with is a bloated -worse-for-wear belly to deal with.
I had an expectation that chemo gets easier as time goes on. But I was wrong. Chemotherapy is cumulative. It actually stays in your system for up to 12 months with some side effects, such as fatigue lingering longer than desired. Hopefully that wont be the case for me. With each chemo session, the side effects intensify so as time goes on, and as I near closer to the finishing line, the side effects are more likely to occur to a greater degree. So even though its been weeks since I’ve suffered chemo mouth, it’s no shock that it’s come back with a vengeance.
I am literally 4 days away from completing my very last chemo session. I’ve completed 15 out of 16 sessions. That’s 19 out of 20 weeks worth of systemic treatment. As of next Tuesday April 18 that will be 5 months done and dusted. I actually can’t believe it. At the start of this journey there’s no way in hell that I would have imagined feeling this ambivalent at this point in time.
Before I started chemo, I had read blogs and personal stories of “survivors” who on completion of chemo treatment had actually felt anxious and apprehensive as they finished up their final session. At the time I vividly remember thinking “as if you’d feel like that!” imaging that I’d be full of excitement wanting to celebrate and party.
But these ambivalent feelings do in fact resonate strongly right now. It’s confusing because I’ve crossed off each session with such pride and excitement and now that I’m 4 days out from reaching what has been my ultimate goal for the past 5 months, I’m actually at odds with how I feel.
Is it separation anxiety from my medical team that scares me? Or is it being worried that I might not perhaps have a sense of purpose now that my weekly appointments won’t be scheduled? Or am I worried that I wont have an excuse to fall back on if I’m not ready to jump straight into ‘normal’ life with guns blazing once treatment ends?
Perhaps these feelings are due to the expectation that things will just go back to ‘normal.’ Someone the other day made the presumption that my blog will obviously finish now that chemo is coming to an end. What will you write about now they said, as if the cancer conundrum comes to an abrupt halt once chemo finishes. Well it doesn’t unfortunately.
I guess it’s the presumption that chemo signals the end of the cancer journey that perplexes me because if anything I feel that the end is actually just the beginning. Its the beginning of the next few stages of treatment which will bring new physical challenges and a need to re-wire my mind to focus on the next milestone: Surgery.
I might be close to completing Part 1 of treatment but there’s still Part 2 (surgery & recon), 3 (possible radiation) and 4 (IVF in a year or two) to still face which may present to be the most emotional of them all. Maybe that’s why I’m not shouting from the tree tops just yet knowing that I have a couple of tough hurdles to still overcome. I guess these anxious nerves have been laying dormant as I’ve had chemo to shield behind but soon I guess this won’t be the case. But I’ve surprised myself with how I feel right now, so who knows what Tuesday will bring.
You can’t turn back time (okay maybe last night was an exception because of daylight savings), but you can certainly turn your back on a shit time and replace it with a better one. This for me meant topping up my red blood count with a couple of bags of O+ to forget a really fatigue filled week. However, my hemoglobin increase isn’t the only thing boosting my energy vibe and confidence…
I have HAIR! And I’m not talking about the blonde fledgling fluff on my scalp that I’ve been sporting for the past 4 months. This hair is brown, long and real. Yeah it’s a wig, but the hair is real! I look like me. I feel like me!!
As I type this blog whilst sitting in hospital on a Sunday getting a blood transfusion, I feel bloody good thinking about how much better the end of the week has been.
I picked up my handmade real hair wig on Thursday which had been 4 months in the making. At the time I was utterly exhausted and knocked about by the bitch that is fatigue so felt like it was just another routine appointment, but by the time I walked (strutted) out of Kylie Clarke Wig Maker Studio with my new do on, I felt like a new vitalized version of my old self. I couldn’t stop smiling, or looking in the mirror for that matter. I feel so vain as I can’t stop tossing it around, running my fingers through it, and thinking just how real (and good) it looks.
It looks real because it is real! The beautiful quality hair once belonged to 3 beautiful girls. 2 of them are strangers with whom I am determined to hunt down and kiss the feet of, and the other 1 is my Step Mum, or Other Mother as she likes to be referred as. Peta so kindly cut her amazing hair and offered it to me as gift, one that I’ll forever be grateful for. Having already shaved her head for the Worlds Greatest Shave numerous times in the past, this time she had someone to give it to and I’m so lucky it was me.
I’ve learned to be careful what I wish for because there were many times that my adolescent self had said to her “I wish I had your hair”… as I crudely attempted to tame my own locks either by iron or curling tong. How funny it is to now to be proudly parading around with her Pantene perfect mane.
These 3 people aren’t the only ones that I owe my great love and appreciation to, but also over 300 other generous and warm- hearted donators of a different kind.
Getting a real hair wig had not crossed my mind as an option to be honest, mainly because of the cost (range between $3- $5 K +) and because I was too busy thinking about getting the cancer out of my body that my appearance wasn’t really a priority to start with. The Gofundme Page that my gorgeous friend Jaala created along with my girlfriends was such a shock to discover. With the intention to raise a small amount of funds to help put towards my wig, it surprisingly turned into something much greater than expected, and once I found out about it, I was literally floored. The simple act of kindness by so many people who donated is the reason I sit here today with my fresh lush locks and new sense of confidence during a pretty shitty time in my life. And for that, I’m forever thankful! The only tears I’ve cried surrounding my baldness are those tears of happiness that the wig has given me over the past two days.
I LOVE my wig. I can style it, blow dry it, curl it, wash it (not when its on my head), and more importantly pretend that I’m not the breast cancer patient that headscarves often remind me that I am. I can be normal (or appear so at least). It’s so refreshing to be able to get dressed in the morning and choose an outfit I want to wear rather than deciding on something that I need to wear because it suits my headscarf. Sounds ridiculous but its true.
Receiving my new wig has made me realize just how much I have in fact missed my own head of hair. I have become so accustomed to seeing my white egg head that my old self seemed like a distant memory. And that’s okay because deep down I know I’m not the woman that I was a few months ago, even if I now look like her again. I like to think of this whole experience as a Caterpillar metamorphosis – whereby self transformation and change will lead to a better version of myself, and yep, will eventually lead to new fresher hair too.
The joy and warmth this wig has brought me is indescribable.
One thing is for sure, I have mourned the loss of my eyelashes which has consequently affected my confidence more than my hair loss has. But alas(h)! I’ve found a solution that I wish I had of come across earlier as these little beauties can be reused 25 times and instantly reignited my femininity fire:
Just like a caterpillar wraps itself in a cocoon of silk before it morphs into a a butterfly, I’ll use my new gorgeous wig and Artemes lashes as a protective layer whilst I continue with chemo and await the time my own wings (or hair) begin to flourish again.
This time last year I was in Palau; a pristine paradise in Micronesia where my main concern in life was whether I’d go on the morning or afternoon dive session, or sometimes both. Surrounded by the most scenically magical landscapes both above and below the water, I was in a constant state of awe and living and diving a very carefree life.
Life concerns have slightly changed since then. The utter excitement of diving and witnessing red snapper spawning has since been replaced with the fear of possibly not being able to spawn my own mini human. For red snapper, darting in and out of a cloud of milky sperm seems a hell of a lot easier and less stressful.
Emotionally and mentally, I’ve had a really tough week. I feel this is contributed to the fact that my chemo treatment is coming to an end with only 4 weeks left to go. I keep thinking about our 1 frozen embyro, and whether any of the my eggs will survive the harsh effects of chemotherapy.
I had an AMH (Anti-Mullerian Hormone) test prior to the commencement of chemo which indicated what my egg supply level was. I will do another test after chemo to see what the difference is. Prior to chemo my test results revealed that my ovarian egg supply was very low – the equivalent to a 40 yr old. I was absolutely shattered, and still am to be honest. At the age of 30, a women’s lifetime supply of eggs (she is born with between 1-2million cells that develop into eggs) is already down to approx 12%. This scares the shit out of me when I think, well if I had a level of a 40yr old prior to starting chemo, then what percentage will that leave me at post treatment? I never asked what the actual percentage was to start with as I was too scared from the tone of my specialists voice and her words “it is concerning.”
Today I’m feeling scared and anxious thinking about doing another AMH test which I’m guessing will be done in a month or so once I finish treatment. Do I really want to know what percentage of eggs I have left? Will I have any at all that survived the damage of chemo treatment? Will I have enough eggs to potentially harvest and freeze by doing another IVF cycle? Even if I have enough eggs to try and do another cycle, I don’t even know how long I have to wait to do this. I’ve been told to wait at least 2 years to try and have a baby in order to let my body recuperate after such a battering and also to prevent damaged eggs getting fertilized. In this time, perhaps my periods will come back naturally? But this obviously all depends on my egg levels, hence my concerns.
When it comes to egg freezing, a young woman under 35 has a 45% success rate (of falling pregnant) from a cycle with an embyro transfer. This statistic is me. One embyro. One chance. I can’t help thinking about the other 55%.
You know that feeling, the Sunday Night Fear? It descends upon sunset when the carefree weekend is coming to a close and the gloom and reality of what the working week entails begins to present it’s ugly head in the form of Monday morning? Throw in a few drinks over the weekend and that ‘fear’ escalates to the next level. Well despite not having worked for half a year since being diagnosed or participated in any wild drinking sessions for aaaaages, that dreadful feeling still lurks within me as Monday is my chemo day and with that brings a long day in the chair and a sometimes unpredictable week ahead.
With this in mind, yesterday was the first set of alarm bells that went off for my blood count results that came through from my Sunday morning test that I have each week. My liver function results were through the roof and my neutrophils (white blood cells that are first responders to infection that can gobble up bacteria, fungi, and germs) were really low and well below the acceptable level to proceed with chemo. The chemo nurse told us to go home and come back in a week as my body and immune system is too weak to handle another hit. To be honest, I’d been waiting for this moment to happen as it’s quite common for these kind of set backs to take place during chemo treatment, which is no surprise considering how knocked about and vulnerable chemo makes you.
I’ve suffered from a running nose, a razor blade sore throat and mouth ulcers all weekend so yep, it was pretty obvious that my poor immune system was stuck on struggle street with a flat.
I had an ultrasound about 2 weeks ago as my liver function was high, but the results had plateaued out again so my oncologist wasn’t concerned saying that the mild fatty infiltration was common for someone being pumped with this amount of chemo. So yesterday when I saw that my high liver function had nearly doubled from last week, I was quite worried as there’s no way I want to jeopardise my liver for a round of chemo. I can happily wait another week if need be.
Even though I was concern about my liver and that I had been told to head home to resume treatment next week, I had the nurse and registrar contact my oncologist as per her request in the instance of treatment being stopped.
After hours waiting for her to finish a seminar and review my case, I was told to have another blood test to see if perhaps my bloods have improved within 24 hrs. I wasn’t hopeful as my body felt pretty run down. Hours later results showed that the levels were the same as yesterday. Despite this, my oncologist advised that I proceed with chemo anyway. Tough bitch, I tell you! She wasn’t concerned with the high liver function, but more so with the low white blood cells. In order to proceed with chemo, it means that for the next four days post treatment I’ll need to give myself daily injections of Filgrastim which will stimulate my immune system by boosting the production of neutrophils (white blood cells) and also increase my chance of keeping on track with Monday chemo sessions.
I’m pretty lucky considering this is my 16th week of chemo and my body has kept strong enough up until now as some poor patients have a terrible time keeping on track with treatments, needing longer breaks between sessions in order to recuperate. Perhaps I’ve made it up to here so far without any real obstacles a result of my two acupuncture sessions each week where we work on stimulating neutrophils, and also from consuming nutrient dense foods and supplements in an attempt to keep as healthy as possible? Either way, I’m running with it as it at least makes me feel like I’m contributing and controlling the situation in some way.
With only 4 weeks to go, the light at the end of the tunnel is shining bloody bright and the Sunday Night Fear will soon be a thing of the past (I guess until I start working again). With the chemo finish line so close, I’m now feeling excited for Monday sessions and if it means 4 daily injections every week for the next month, then so be it.