It’s been nearly twelve months since I finished chemotherapy and thirteen months since I had a visit from Aunt Flo. I’ve always imagined Aunt Flo to be a slightly eccentric, slightly deaf, toothless, foul mouthed, shawl wearing, smoking, mad cross stitcher, with a hoarse voice that abruptly shouts at anything that moves.
Nothing about my menstrual cycles have ever made much sense to me. Painful, loathsome and life disrupting. So imagine my happiness when chemotherapy locked the door on Aunt Flo for over a year.
Everybody in the house shout “Yay to Cancer!” for Lisey.
In recent months I have been experiencing loads of pelvic symptoms. Cramping, sharp pains, dull aches at night that wake me. Whispers of pain of sorts. And all of this even detectable while my household went through the worst flu and longest recovery I think we have ever had.
Last week saw me get the news that I have cysts on my ovaries which tends to be common for pre menopausal women on
Tamoxifen, err I mean Tamoxibitch. The drug does not lower oestrogen in a women’s body but changes its ability to connect with cancer. Akin to changing a lock and having the old key not work. And this is rather important given my grade three tumour was 98% positive for oestrogen.
Well after nearly a year of sleeping, my ovaries are now working over time to get the show on the road. And it seems at present I have enough oestrogen to initiate a great coral spawning episode on the Great Barrier Reef.
Unfortunately one of the cysts is approaching seven centimetres in diameter and is “complex” in nature. Which means it’s got solid parts to it, and cancer cannot be ruled out. Rather than the simple, rounded, smooth clear fluid filled cysts that are observed on ultrasound, that women commonly get throughout their fertile years.
It’s not easy getting around with a seven centimetre complex cyst in your abdomen. Sitting, coughing, laughing, weeing and pooing hurt. Sometimes walking hurts too.
Normally, ovaries are the size of an almond or a walnut but swell to larger dimensions with cysts. Mine resembles a large lemon. Not that I have anything against lemons. I love lemons. I really do.
But the real danger of having a cyst this large is in having the cyst and ovary twisting on itself (torsion) and becoming necrotic which is a medical emergency.
It’s also not easy wondering if the cyst in your pelvis might be cancer. And it’s very easy to go to that place in my mind given where my journey has been since January 2013.
So to be honest, I have spent quite a bit of time in recent weeks and over the weekend wondering if I have in fact Ovarian Cancer or Breast Cancer mets to my ovary. The Dread Dragon paid me a visit over the weekend and even Mr Cool has been under his spell. The ongoing threats to my health are wearing us both down.
The Cancer Council of Australia lists symptoms of Ovarian Cancer as including one or more of the following:
- abdominal bloating or a feeling of fullness (when eating little).
- Loss of appetite.
- Unexplained weight gain.
- back, abdominal or pelvic pain.
- frequent urination.
The issue with such vague symptoms is that many women experience these symptoms ALL THE TIME. And some of these symptoms normally present when Ovarian cancer is advanced which obviously leads to a much poorer prognosis.
I guess the point again is listen to your body and see your doctor if things don’t feel right. Listen really attentively. Pick up on the whispers. Women are the best judge of their own bodies.
The only thing that has lifted this worry and uncertainty is the excellent care and prompt action of my awesome oncologist who gave me a referral to a superb oncological gynaecologist in the big smoke. And yesterday, I made the trip to see him at very short notice. (Must remind myself to take my oncologist a gift of thanks to our next appointment.)
At the end of an exciting week which saw an upper abdominal ultrasound, trans vaginal ultrasound and a pelvic inspection which included both vaginal and rectal exploration, (Imagine adult hand, glove, lube and small talk). Dr OG (that’s Oncological Gynaecologist) suspects that based on my hormone levels and bloods it isn’t suggestive of ovarian cancer at this stage, but he can’t rule it out without actually removing the ovary. He said I would be very, very unlucky if it turned out to be Ovarian Cancer which is more likely if you are over sixty or carry the BRCA genes, which I don’t.
So the plan is we will try the wait and see approach. Rather than expose me to unnecessary surgery now, when the odds are more favourable that the cyst is benign than not, we will look at it again in four weeks.
And that means I get to experience the joy of another trans vaginal ultrasound! Yay! If the complex cyst hasn’t resolved on it’s own by then, if it is still the same size or larger then it looks like there might be surgery to remove my ovary, or both ovaries and remaining Fallopian tube. I lost one a few years back and nearly died but that’s another story. There may also be a need to review my relationship with Tamoxifen.
Dr OG is betting that the complex cyst will resolve sometime soon, and given the thickness of my endometrium, Aunt Flo might be paying me a visit in the near future after all. And when she arrives she could be quite a doozy, if you know what I mean!
Better put the kettle on and see what the next four weeks brings.
Surprisingly, this new found situation of reemerging fertility actually caused me to think about having more children. For a few minutes yesterday in the car I found myself lamenting all of those perfect little eggs of mine that would never get to meet with my husbands DNA and become another of the most divine little creatures we already have. Maybe we could find a surrogate? No, no. Stop thinking about that. Then some tears. That part of my life is over now. It’s taking the potential return of my fertility to remind me of that loss.
After not having a period for thirteen months and thinking of myself as menopausal for a long time it’s a bit strange to be entering the fertile fray again. One thing is clear, I’m definately in no rush to go out and buy myself a nice pair of cream pants!
Hell, I might even throw myself a period party. Dress code… red of course.
Did I just type all of that? Why yes I think I just did!
My ‘scanxiety’ is back. It manifests in clenched mouth, shallow breathing, and nauseated stomach.
Today, I return to the CT donut and the awful litre of contrast drink. Wondering if it will be aniseed flavoured this time?
The ‘what if’ thoughts are frequent and my adrenal glands are on high alert.
I’m following through with the advice of my team, the surgeon, radiotherapist and GP and checking that things are okay with respect to some symptoms I’ve been having. Tomorrow, I will see my oncologist for a checkup and the results.
But today, I return to a frequent scenario from last year. Fasting, surrendering to technicians and their technology, laying perfectly still, listening to my heart pound, holding my breathe and waiting. Waiting and wondering.
Boarding the train, the message comes through on the loud crackled speaker. This train is cancelled and is to be replaced by coaches. The fact it is the exact coach that transported our guests to our wedding is not lost on me.
There has been an unfortunate event down the line they said.
An unfortunate event.
Murmurs amongst passengers speak with hushed syllables of a life thrown away.
I am left wondering if someone was finding it all so hard, and so unbearably painful, that they couldn’t take this thing anymore. This thing called life.
A poignant reminder.
Given I hope, and wish, and will, my own life to be a long one.
You can tell a lot about a family by looking at the outside of their fridge.
If you sat in our kitchen and watched our refrigerator, you be privy too a flurry of activity throughout the day. Doors opening and closing fifty odd times, and as the daylight changes in the kitchen you would see the buttery finger smudges of little hands on the door or some splashes of yoghurt on the handle.
Up high on the doors you will find numerous fridge magnets, the latest bills, an assortment of pictures covering children’s firsts, kindergarten mug shots, photos of cousins playing in mud. There are newspaper clippings of past athletic results and ribbons from running club, name badges from previous employers, a train ticket from our wedding day. There is a reminder to have the dogs vaccinated. A discount voucher from the video store, the latest party invitations and postcards from far away places. All of this interspersed with children’s art and placed up high so a certain little human cannot grab it to experience the fun of ripping it all up into thousands of pieces.
Currently buried amongst all these family trinkets sit two medical imaging slips. Fastened to the fridge with a magnet which is the front half of a cow from a Leap Frog children’s toy. An order for a CT Scan and a chest Xray slip sit patiently. Both were written up by my very thorough GP and have been hanging there now for nearly three weeks. Just. Sitting. There. Under the magnetic half of a plastic cow.
In the week leading up to Christmas I developed an annoying cough and although not too serious or too annoying, I noticed changes to my breathing. Which is at times laboured and I have experienced a bit of dizziness on occasion. The cough began as an involuntary response when I inhaled. And this coughing has stayed with me for just short of two months and is at times annoying. But not too annoying. There has also been some subtle abdominal pain. And there is the relentless fatigue that I have on some days, and a nausea that prevents me from eating at times and this comes and goes.
For I wish that I could take my mind back to a time when I could be just a little bit sick. But not too sick. And the cause would always be something so simple. So simple and so benign that I wouldnt require lengthy and expensive tests at hospital, which potentially fill my body with more radiation or nuclear material or contrast. I wish I never had to experience any more ‘scanxiety’.
But gone are these innocent days when all I had to worry about was a simple sniffle or the flu, or back pain from poor posture or a bout of gastro.
Once you are diagnosed with cancer, the notion of being only ‘a little bit sick’ is forever lost. The perspective of just having an ‘innocent illness’ is gone. You are never again able to live truly free of the fear of this crappy disease coming back.
So this loss is lamented.
Now a perfectly sane and healthy person, would just go and have the tests. Or would have rung their radiotherapist or oncologist by now. But once you have been through a barrage of cancer treatment, it’s easier to just stick your head in the sand.
This is the hand and the sand that post treatment cancer patients face. The dilemma of having symptoms, and more testing and then the ‘scanxiety’ that follows when waiting for results.
And when a young, vivacious, fellow, early breast cancer survivor with very good prognosis, is found to devastatingly have their cancer progress to stage four this week it just feeds this cycle of worry. And then the Dread Dragon returns for a visit.
Of course, there are loads of logical explanations for the cough I have. One being my lungs were probably burnt in radiation and there might be some inflammation. Which might heal with time, or there might be scar tissue developing. And if so, I should go and have some tests to determine the cause.
Perfectly reasonable explanations.
Another, the air is dusty at the moment and lots of people are complaining of sinus issues, and that might be causing me to cough.
Here’s another, I might be developing asthma.
And another, I am simply a “Cancerchondriac” and it will go away and I will forget about it.
Or this one. There might be cancer in my lungs.
Of course, tests would certainly put my mind at ease. But this week, I’d still rather not know. So I’ll wait till my one year appointment with my surgeon in nine days, and then see my oncologist a few days after that. And I will see what they say.
And then I will find out if I am in fact just a little bit sick, but not very.
Oh, and I better get the dogs vaccinated.
My ‘dread dragon’ head is back just in time for craptastic chemo cycle number five, with today’s dose of Taxotere at tax time. Two of my most favourite things! (Not!)
Please excuse me while I go and wait for the week ahead of the men with spears jabbing my tired bones or the tender and painful fingernails that can’t push medication out of foil packaging or undo seatbelts.
Most of all I just love my Taxotere filled, weeping, blurry eyes. When I look in the mirror I can’t see my wrinkles with these. It’s like some sort of imaginary and free Botox treatment.
And I just can’t wait to drag my tongue over the hot molten ash of Hawaii again for that mouth ulcer party! Just love a good lava licking session!
Oh and how could I almost forget how my intestines seem to go on vacation for the week. Anyone got a number for a good plumber?
I’ve come such a long way from referring to my chemo infusion days as a health spa haven’t I? Fortunately, there is only one more to go after this.
But it is true. Chemotherapy can officially kiss my grits!
Today, the visit to the surgeon was an intimate affair after hubby was left to find a car park with the kids. I felt a little guilty, as though I was going to meet my mistress. It was a candid exchange. There were polite greetings, warm smiles and then the getting down to the business of inspecting the surgical breast, tissue expander and the progress of my painful and useless arm.
In the room were two late thirty somethings brought together to deal with the issue of breast cancer. One to supply the body and the other the scalpel. Both bottle blonde. Both having spent as much time studying at university in their lives, but one, a highly successful surgeon, the other, not really a highly successful anything. The usual breast care nurse with her human touch was not required for this visit, since I yanked out the drain getting out of bed for our storm crazed whippet.
We talked about how I have been travelling in the seven long days since our last visit. It has been two and half weeks since the surgery that took my boob and lymph nodes and replaced it with a tissue expander that won’t ever get expanded. The surgeon said “You look great, the breast looks excellent! You are healing really well and your arm is lifting high. Of course I didn’t expect anything less given you are young and fit. I’m sure you will push yourself.”
And then the clinker… “I won’t need to see you for another three months!”
I reached down to the grey carpet and picked up my heart off the floor and pushed it back into my chest. I could feel some steamy heat seeping through the gap under the closed consult room door where the Dread Dragon was outside panting. I knew this moment would come. It felt like I had just been dumped after a string of successful dates. I was sure she would want to have many more rendezvous. I am disappointed. I struggled to comprehend. It was all going so well. Today she even said my hair was “pretty” and my boob looked “fantastic”.
In all of this shock and disappointment of not getting to see her for three long torturous months, I confessed. In the confession was an embarrassing explanation of the dreams I had been having of her, my fascination with her clothes, shoes and perfume. I even asked her about her enormous engagement ring.
“That is the most amazing ring I have ever seen!” I clumsily blurted out.
“Oh thanks! Yes I have waited a long time to get it” she replied with an embarrassed tone.
I also mumbled something about my respect for her chosen career in such a traditionally male dominated area. And then, I admitted to taking secret pictures of her shoes, legs and dresses.
All of this was highly inappropriate and impulsive. But I don’t care. I am a stalker. Hopefully by confessing I have avoided any sort of lawsuit relating to privacy breaches. Though there still is the small issue of the stalking.
I won’t be posting images of my fantastic plastic boob. So instead, it’s another image of the surgeon’s divine shoes. Unlike the others, with this one I had permission to take it.
Today I also learnt that going on a crowded ‘standing room only’ Melbourne tram is not the smartest of ideas. Post mastectomy and with my useless arm, the anxiety of elbows, handbags and congested bodies was just too overwhelming.
Oh and in case you were wondering, my new boob is fantastic! I showed my girlfriend today and she also agreed there has been an enormous improvement in the Lisey chest situation.
My brother surprised me by flying in from Queensland. This has meant the world to me! He brought with him a bag of facetious comments and a bucket filled with his supreme wit. He hand delivered some cards and pictures made by his beautiful kids, for myself, hubby and my little boys.
My pain medication has been tinkered with a bit after experiencing some breakthrough surgical pain at night. Some medications have been sending me on a little trip.
While waiting for surgery on Tuesday, I experienced a hallucination from some pre surgery medication. My head felt heavy and rolled around on my neck as though it was losing it’s balance. It then grew into a granite boulder and rolled off my shoulders. As it landed, I remember seeing some moss and lichen fall off onto the vinyl floor of the admissions ward and thought the nurses would have to sweep that up. The floor would have to be polished to remove the scratches. The boulder rolled down the corridor towards the surgical theatre. I wondered if it might crush the theatre staff. I was unsteady on my feet and laughing and was kindly assisted by a nurse into the surgical ward. By the time I was prepped and ready for surgery I was lucid and was annoyed that I had missed some pre surgery comedy action with the bearded nurses again.
As luck would have it, one of the original team of bearded nurses was on duty that afternoon, and I saw him in the corridor. He was the one with the thickest beard and like me, wore spectacles. This time I learnt his name and I thanked him for caring for my glasses a few weeks ago while under anaesthesia. Only a glasses wearer would understand the importance of that. One of the other theatre nurses told him that I had written a blog about him. I wasn’t sure if he was embarrassed, flattered or indifferent. He probably has no time for reading the blogs of strangers.
I took another trip today, this time with a different medication. Now I am wearing red arm bands labelled with several off limits medications. Next to them, is the green one that says I am a falls risk and a yellow sign on the wall behind me that says the same thing. Something to do with my drains and medication. All of this makes me laugh as I ran a 10km fun run just five days ago.
My brother believes my reaction to the drugs is happening because the nurses are overdosing me so I can’t write about them. At lunch, I was brought my third combination of laxatives and stool softener. There were two more types yesterday. Nothing has worked so far as the pain medications have slowed everything down a bit like when there are roadworks on the South Eastern Freeway. I think my intestines have gone into hibernation. I am reassured this is common post surgery. Brother warns me that he thinks the nurses aren’t happy with what has been written here, and just want to see me have some terrible toileting accident. “Here’s your triple dose of an non-gentle laxative Lise” (insert evil nurse laugh here).
Our time together was special. We talked about the recent loss of our Dad to cancer. We talked about what it feels like to have cancer and to be on the interior instead of the exterior of it. We reflected on the impact that cancer has on families, especially our family. We laughed at the idiosyncrasies of our young children and the quality of the partners we chose for ourselves.
In true ‘Oh Brother’ style, as he went to leave he asked me why all of the nurses in this hospital are ‘hot’. And he joked that he might just take photos of them from the lift as he left. Just as well he hasn’t come across the bearded nurses. And fortunately for me, he hasn’t seen my surgeon.
Minutes after he left me, he took a picture of a dragon in a children’s playground near the hospital and sent it to me. Perhaps this could be my Dread Dragon. After a visit from my brother, my Dread Dragon isn’t so fearsome anymore.