Monday 31 March 2014

Bracing myself for what comes next - update.

On Friday I noticed my left thigh seemed to be more swollen. I wondered if it could have been related to another trip to Sydney on Thursday. This time my husband drove so we could attend a funeral of my dear friend's mum - about 9-10hrs return. It got worse over the weekend despite massage.

I wish I'd thought to wrestle slip on my compression [running] pants. Today, I chased around trying to get an ultrasound since I'd self diagnosed a seroma (accumulated fluid) ,much easier to deal with compared to the alternative an infection/abscess or something else - though it was unlikely.

The GP couldn't get me an appointment at either of the two local imaging centres , so he said present to the hospital.

Thankfully, I had my iPad and 2048 and Sudoku to pass the waiting time. My mobile wifi refused to connect.

 I'm grateful I got the ultrasound because I would have cracked it I don't want anything to delay the start of the radiotherapy. My appointment with the Professor -Radiation Oncology is tomorrow to get that rolling.

As it was a seroma (and I was a private patient for my surgery in Sydney), the Dr rang my surgeon in Sydney, out of courtesy, for advice. I need to have the accumulated fluid [seroma] drained by a needle and syringe aspirated under guided ultrasound tomorrow at 9.45am, at the hospital.

It took a while to get everything sorted and then I was quite stressed because I had to be home to meet my boys at the school bus. I made it just in time.

Bracing myself for what comes next because I might need to have it done a few times, I hope it sounds worse than it actually is ?
Fun times.


EDIT - Well we were wrong - the fluid was a haematoma and a collection of blood not serous fluid - about 70mls was aspirated by a bloody big 19 gauge needle and syringe. It is still a bit swollen looking but swelling has reduced. The worse part was the local anaesthetic injection. It is now sorer than before but I'm sucking it up and going to paddle today anyway.

I am now (in the next week or so) in waiting, for the call to give me an appointment for Radiation treatment planning.

  -♥

Wednesday 26 March 2014

Wordless Wednesday ~ Possum Magic

The 'Man' view out the window above the toilet ...
 What the ?



Until Sunday we had never seen a possum here - you can't see the cat in these photo ! It caused quite a commotion ; Possum being chased by Mia, Mia (cat) being chased by us and the boy who caught her.

Poss got away but couldn't get a grip on the gum trees. We relocated Poss to trees out the back , nearby where we first found Poss (on the outside of the bedroom sliding door). Then he bit Hubby.

Our friends visiting from Blue Mountains had told us a few Possum tales on Saturday night, they back onto bushland. We wonder if it stowed away over the mountains with them.


 

Tuesday 25 March 2014

Cancer is a bitch Chronicles - MPNST update.


Yesterday, I flew to Sydney to get another opinion from another professional about MPNST. Malignant Peripheral Nerve Sheath tumour.

What do they have in store for me today ? 

I wondered over and over.
The in/out bound flight was a bit unsettling, the weather was diabolical and you couldn't see anything for the clouds. No silver linings on the horizon.

Some Sydney areas had their heaviest daily rainfall total in over a year, recorded in just under an hour - experiencing significant flash flooding . I was fortunate I allowed extra time because I couldn't leave the train station for 45 mins. I was quite stressed about being on time. The rain was torrential*.

Optimism Index:
Mixed emotions, moderate anxiety with a chance of scattered bursts of sad.

Luckily, I had brought the black not pink umbrella and one that was easy to transport.

So I had to “go for it” and tough the rain. As I walked to the hospital, the rain seemed to get worse again, water seeping into my boots , juggling my bag and suitcase. There was little time to dance in the rain.



As it was, I had to wait an hour before I could see Senior Registrar. Then another lonely wait while they reviewed my scans etc and then finally I saw The Radiation Oncologist . After consultation with the Sarcoma team , a multi-disciplinary range of specialist doctors, committed to the fight cancer metes out - she agrees I do need radiotherapy to my thigh - to help prevent recurrence. Since further surgery to my thigh to obtain clean margins (2-5cm of normal tissue) is not viable - it would be catastrophic or result in extensive rehabilitation.

Dr S was confident the local Radiation Centre and Oncologist  (2hrs away) could prescribe and coordinate the course of my radiotherapy  treatment - a bit closer to home. She will support me on an ongoing basis and book me for PET scans as necessary. (As she has done my husband for 4 years).

The other areas of concern , the equivocal neck lesion and my 5mm lung nodules they can't decide a treatment plan for until scans show changes or growth or rule them out. The nodules are just too small (need to be 1cm=10mm) and the lesion is in a tricky location to biopsy. She felt to involve more doctors at this stage was impractical ? unnecessary. I am just not 100% sure.

I must pray hard relax and just accept things in the interim and try not to worry. I will have a PET scan in 3 months and a chest CT

So - I wait till next Tuesday to know what happens next. I have met the local Radiation Oncologist and he was a nice fellow. Getting my treatment plan going may take a few weeks.

I'm not terrified of the radiation only the logistics of being away from my family; the emotional and financial burden for 5-6 wks. I will most likely be away 4-5 days a week because driving 4-5hrs round trip each day plus appointment & waiting time- will be difficult and more physically demanding not to mention the vehicular fuel thirst.

I only know what radiation feels like from my husband. Vastly different than after they inject toxic chemicals into the body ; thankfully chemo was not recommended. That is one less huge worry.

The flight home was delayed 2 hrs due to the severe storms. It was a turbulent, unpleasant ride, in a too small plane (40 seats ?), at night - no wonder they gave free whine wine. I was never so glad to touch down at around 10pm.

*Put those figures into perspective,  rainfall rates in excess of five mm in 10 minutes can be enough for flash flooding...I saw the news later -cars floating down the street (not where I was).

I still love this song...it blew my mind with the rain and all.

Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?
What if trials of this life
Are Your mercies in disguise?


I am still praying for healing and will seek it out...as well as a pink umbrella. I just found out Daiso sells them.

 

 

Sunday 23 March 2014

Equivocal

Tomorrow is a big day, I fly to Sydney (and home again) to meet with the Radiation oncologist.
I have faith; confidence she and the Sarcoma team will give me an unequivocal plan to have radiation or not.

My Brain MRI was normal - unremarkable ; less so than an MRI I had over 3 yrs ago . I got a 2 line mention - no evidence of metastasis, last time I had an MRI - they wrote 2-3 paragraphs (still normal but a few odd things) . Praise God !


{A good reason to celebrate , another small step , with a good friend who came to visit this weekend. She is going through a rough time too with a very unwell mother.}

The lump in near my throat trachea , jugular vein and inferior to left thyroid is still there and needs further investigations - the MRI report was equivocal - so open to more than one interpretation; ambiguous.

This song is beautiful. Soul for Sunday.



Artist: Laura Story

Album: Blessings

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?
What if trials of this life
Are Your mercies in disguise?

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
And all the while You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?
And what if trials of this life
Are Your mercies in disguise?

When friends betray us, when darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can't satisfy?

And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise?

This is the back story to Blessings.

Another dear friend sent a few lines from this song , she heard it in the wee small hours. My BFF & Google helped find the whole song.

Enjoy.
How have you been blessed recently ?


 

Thursday 20 March 2014

Good news 1 : BONE SCAN was clear

My BONE SCAN yesterday was clear of Metastastic disease. All week I've been worrying running on adrenalin and I haven't slept much due to the worry of what is unseen to the naked eye.

Xray vision anyone ?*  


Vague aches and pains everywhere , not that I complain , just saying I have them and they cause more anxiety than actual pain - wondering, what if ?

One less worry, now. I'm so very relieved though I still have other things to deal with. Meddlesome arthritic changes; I can live with creaks and groans that.

It feels like a dark cloud has lifted from us this week with many things falling into place for the case management plan with Sarcoma Multi-displinary team in Sydney. The appointment after the meeting to discuss the options and recommendations is my next hurdle. I will fly down to Sydney for the day and back home again.

Tuesday, the visiting Radiation Oncologist said after looking at my notes , he would advise Radiation therapy. He reassured me he will be happy to take care of it . He told me Dr S was very good and also there was a better Sarcoma team, in Sydney.


Big decisions.


I’ve exhausted many articles and research results available on the Internet, plus chatted to people in a Sarcoma Facebook group. I'm much more confident in accepting the doctors’ recommendations and asking questions.

“Sometimes the questions are complicated and the answers are simple.”
― Dr. Seuss
 Rather , Vice versa ?

I know many more people are reading than commenting ; there isn't much you can say.It's okay.
Although some of you have met me and more may never, meet me personally, I thank you for your concern and for caring about me and my family.

The lovely GP gave me a stronger script to help me sleep.

The earworms are still on loop ... I'm freaking out because tomorrow is another big day with Brain (because of headaches - I have them randomly - so they are covering everything as a matter of course, to rule it out or to know) and neck MRI (because of the other lesion or whatever ). They said MRI will take one hour.

At least Dem bones are good for another dance.



Is he doing the Futterwacken *?

I heard this song today the Faith to Believe ; I've not heard it before. I love it.


*The Futterwack or Futterwacken is a dance in the Alice in Wonderland movie.
 



There is actually for that - an X ray vision app I checked to prank your friends with.

We have lovely friends coming to stay the weekend and I am really looking forward to that.
What have you got planned ?
 

Wednesday 19 March 2014

Wordless Wednesday - 100 Happy Days


To distract me from the dark clouds hovering over me - Though the rain in our tank is very welcome.
I've been finding something everyday to make me extra happy #100happydays is a fun little photo project.
Here are 4 from first 10 days.

Purr fect Therapy

Choc coated dragon slayer  and dishwasher (makes me happy)

Water tank is almost full.

Boys - the toys machines just get bigger- this was exactly as I found them.
Machinery Expo made my man happy ...I need to hide the check book for tractor attachments not the tractor though.






 

Tuesday 18 March 2014

Living on a wing and a prayer

What does this mean apart from a catchy title I liked ?

Firstly, I am well and I am happy.

Just not knowing what is going on in my broken body is my concern; for the future not so much immediate.

I have a few minor pain issues and my wounds are healing well. I can't wait to run again.

So I Googled - It means you are living on the edge and hope for the best 

also ...





Anyway, they all fit .


In music - as Bon Jovi says

Whooah, we're half way there
Livin on a prayer
Take my hand and we'll make it - I swear
Livin on a prayer  


I went into town Saturday to be prayed for at the Healing Rooms , I think it is part of our church but also other Christians are on the prayer team.

Three ladies, I've not met, prayed for my present and future too ; then asked if they could hug me. True story, not weird at all.

Late Friday my husband left a message with his Cancer care nurse, M who works with his Radiation Oncologist Dr S. The Nurse M called back yesterday afternoon with a plan and appointment for Monday afternoon.

Dr S besides being a specialist Radiation oncologist has an interest / specialty in sarcoma (and even a little Breast cancer amongst other things) will take my files/scans to the Sarcoma case management multidisciplinary team next Monday , before my appointment. Then meet with me afterwards.

My husband is going to take, to Sydney, all my scans etc. tomorrow. I feel so relieved to have Dr S opinion on my complex issues.

We've got to hold on ready or not
You live for the fight when it's all that you've got...


That is my earworm for today and this 




Tomorrow*, I am having a Full body bone scan - 'precautionary' for further investigations and Friday I have an MRI of my brain and neck region.

*I must add that the Bone Scan tomorrow is being undertaken specially - as they normally only do them Monday and Friday. I am so thankful for the care I am receiving in my local community too.


 

Sunday 16 March 2014

Seuss on waiting and Soul for Sunday




This song slays me every time.I am still not sure of my favourite cover.

Life will continue to surprise me us in so many ways...I have learned that miracles can happen, and good things will happen in my life.

They are not mountains to conquer but mounds of opportunity.

This book nails it too. Waiting and oh everything ...speaks to me right now. Enjoy.


I love John Lithgow's voice.

 

Friday 14 March 2014

The cracks are showing ... in my boat.

Today, I was 4hrs & 15 mins early for my Oncology appointment at 11am.
Sure I wrote it in my diary ; sure I didn't check.
I know I am an idiot.

Luckily the Practice Manager saw me sitting there while patients were coming and going - so she checked. Then she came to tell me why I'd been sitting there , almost an hour. Thankfully, the Oncologist could see me then and I didn't have to wait till 3.15pm.
Hot salty fries.

I've lost my executive functioning , I know it is related to chemo brain, stress,lack of sleep and anxiety.
I can't remember lots of things. Important things.
It's refreshing to hear other cancer patient's stories about chemo brain; confirms ones own insanity.
I must use my diary.
I must use my diary.
I must use my diary.


When faced with a major illness or stressful life change, you don't have to go it alone. A support group can help. My Facebook Breast cancer support has helped me immensely.




Be it cancer , illness, or major life changes support groups bring together people facing similar issues. I have been a member - unfortunately- of several online support and real life groups.

I am so thankful (well I wouldn't wish it on anyone) I have found a few survivors and people undergoing treatment with MPNST (mostly in USA) ; to share experiences and advice.They are a friend of another lady in a NF support group, plus she has other friends dealing with MPNST too. Very valuable resources in case I need it later. Meg had her second MPNST removed a week after me in February.

It can be helpful just talking with other people who are in the same sinking, stinking boat , up shit creek without a paddle. Seriously, I found this in case you need your own special paddle.
Don't Get Caught Without One!

I have to keep laughing.

Unlike my pretty pink paddle - it was my anniversary, going into hospital present. Paddling is my therapy !




Already , we have being able to offer one another emotional comfort and moral support. Due to the rarity of MPNST they may also offer me - practical advice and tips to help me cope and give me confidence asking questions about my treatment etc.

My husband and I have a lot of other stuff to deal with right now, we feel very isolated and the past month has been a big struggle emotionally and physically. My mother lives over 300kms away and it was a God send she came to mind the boys here for a week. My family help as much as they can.


One lady from church offered to send us meals when I got home from hospital.Sam (7) has severe food issues - he only eats a limited number of things (chocolate no worries at all) and I'm a bit particular about what I eat, because of cancer I want a diet AS HEALTHY as possible. I am not complaining I need that control.

We are generally OK, my husband works mostly on our farm and together we get through. If he had to work outside the farm , it would be a different story. He is my rock and shares the housework and caring for our sons. Especially, he gives me the time out to paddle. I am so grateful.


My Tuesday appointment with the Radiation Oncologist is at 11am, just to ask questions. I asked them to double check the time.

Paddles up and dig !

Ps : If you notice any grammatical errors please tell me , I honestly can't think straight.

Wednesday 12 March 2014

Wordless Wednesday - Stop and smell the flowers

Though I wouldn't call myself a cut flower gal , these were given to me by my SIL and I was touched.

'Stop and smell the flowers', isn't just related to flowers. It's a little reminder for each of us, to stop rushing ; enjoy our lives. To stop and enjoy the day, the moment and the minute...the wonder and beauty all around us.

Slow down the pace ... time passes quickly.Time not spent wisely is lost and will not return to us again.  


 

Tuesday 11 March 2014

and breathe ...

Thank you, for all the well wishes and kind thoughts. In time I will reply. I'm deeply touched by the outpouring of concern and prayers.I received  messages and emails from people saying they had been following my blog and I have been in their thoughts.


My WIFI faith is important to me.

 I'm feeling a bit more at ease - just not holding my breath for any absolute answers I wanted yesterday - any time soon.
Patience.




Nothing can be predicted and the unknown quantity is still frightening. I've spent the last 4 days (Thurs, Fri, Mon & Tuesday) in town having scans or ultrasounds & blood tests and then waiting around 2-3hrs to get results.

I must be glowing from all the radiation. The imaging place puts lovely red stickers on the envelops to say they use ULTRA LOW DOSE CT. You're welcome.



I filled in time, in between the waiting, using free WIFI at library and going to one son's classroom to help with reading etc..

Seven year olds are good medicine. I also love that my sons are not shy about giving me a hug at school and then asking for $1 to spend (how could I refuse) or do I have a spare hat in the car ...Sorry I forgot.

They keep me grounded and laughing...all the way to the bank. Then it cost me $23 at the school for various things. (My oldest son messages me by text or on Facebook to transfer money, to check-in at the airport for him & his friend, pay for the youth hostel ...so I feel needed.)

One of my favourite verses.



The Radiographer Drs cannot be100% confident about the lump/lesion near my sternal notch (neck) . The Ultrasound report from Friday - said it likely to be a neurofibroma or possibly a lymph node - so they recommended a MRI. [I open everything within 60secs of exiting the Imaging premises - do you?)

Hopefully, when I see Oncology DRs they can get that organised ASAP. I can't feel any lump because it is retro-sternal (So inside ? the chest cavity near my neck - not even sure I wish they could tattoo a pic on me) . I have weird pains anyway because of the mastectomy and tightness across my chest, not always just intermittent.

The Liver / Abdominal ultrasound didn't show much, as my surgeon predicted, and it only found one cyst ? as in one of the 2 spots +1 cyst, the other 2 'whatevers' were not identified yesterday. So it is sort of a relief. 

When you are treated for cancer you have different doctors for different things , as a public patient they practice case management and a team of doctors and health professionals make decisions regarding treatment options at a combined meeting ; what chemo you have, if you need radiation or not and other investigations. My surgeon / surgery was private  both for breast cancer and MPNST (Same Same), he has little to do with this case management -as far as I know.

Sometimes , I have felt my care was a little disjointed having a private surgeon and public chemotherapy at two different cancer care centres (it was my choice to have weekly chemo close to home in the country Oncology Centre). My Breast Cancer Support Nurse (who works closely with McGrath's Nurse) has been a tremendous advocate for me.

I have yet to speak to the Oncology doctors (They manage the Breast Cancer Chemo/Herceptin and followup - it's happening Thursday 13th.

I don't feel like pushing things as urgently now. I have another appointment with a Radiation Oncologist Professor (from Orange) next Tuesday 17th for his opinion on management of the Malignant Peripheral Nerve Sheath tumour and whether I will benefit from radiation therapy; the Surgeon doesn't think so. Though , I trust his judgement and expertise , it doesn't hurt to ask.

 I have also had several blood tests to check on blood pathology as per my Surgeon and GP. It only showed that was existing - either I liked DRINKING a lot in the past or I've had cancer because my liver function tests are abnormal (but have stayed stable for 18 months). The GP I saw today (4th in as many days) asked if I was drinker (nicely ..then said we know you had cancer so that shows this too).

The Porta-cath (like a Central line) I had for intravenous chemotherapy is staying put for now till I am NED (no evidence of disease).

Otherwise , apart from very disruptive sleep - I feel well , in the daytime I feel positive and in the dark of night - I lie awake fearing my tomorrows - definitely crazy , who isn't ?






 

When I had the CT a 'machine voice' told me when to breathe in and hold and breathe and they had a button that lit up too . I found it a little funny.

Monday 10 March 2014

My favourite Things !


In 2014, Multiple Birth Awareness Week will be held on 9-16th March nationally. When multiple birth families and clubs celebrate -  the challenges and joys of Multiple Births .

Every day I know how lucky we are to be gifted our two miracles S & J . At seven years they are developing very different personalities - chalk and cheese. Some people still say they look alike but others are amazed how different they are (besides the glasses)

Even push ans coot with different feet.
Each year, the Australian Multiple Birth Association (AMBA) promote Multiple Birth Awareness Week. Promoted at a local and national level it hopes to educate communities about the existence of AMBA and how it supports families as they meet the challenges of parenting twins, triplets and more.
these are some of the events.

Incredible fact: In 1853. a peasant named Kirilow was presented to the empress of Russia as he had been married twice and his wives gave birth to 72 children including 4 sets of quads. 8 sets of triplets and 8 sets of twins !

I cannot imagine it. Hardly seems believable.

Last night I discovered they are trying to re-establish a local Multiple birth group , meanwhile I've joined their Facebook group. I haven't been an AMBA member for a few years since we planned our tree-change.

They have a meet and greet on Sunday in a local playground.

This year my twins are in separate classes for the first time , in fact, there are 4 (of 5 that started in Kinder - the 5th set my friends moved to SA) sets of twins in their grade and all are in different classes - a few separated 'twin's per class.

It was a big decision for me and I'm still not confident about it, though both boys are coping well.


In a way I felt like a fraud having twins via IVF instead of naturally but regardless we came through against all the odds - so they are still miracles.

[After adopting 14yrs ago, then my first pregnancy in 2004 which ended when our daughter was stillborn at 6 months we went down IVF path in 2005.]

On our 2nd cycle (3rd Embryos transfer) we had two remaining embryos from 17 fertilised eggs. We had had two previous transfers of two embryos – unsuccessful.

On our third attempt those two embryos implanted and we were elated I could finally take a breath and go to the toilet at our 7 weeks 2 days ultrasound - it was our greatest joy to see both our little blobs had perfect beating hearts.

In time , really at the last minute , I  contacted our local AMBA as I didn’t want to jinx myself.

I didn’t subscribe … till after their birth. We went along to an expectant parent evening and I began to realise what a blessing we had received - excepting not one baby but twice the joy in two for price of one. They made it all seem so normal and wonderful at the same time.

Keeping it real - I knew I wouldn’t have to worry if something came up because someone would sure to have an answer for me and support. I never thought – how will I cope? Our boys arrived one month early but well and perfectly healthy.

So far it has been an amazing journey and I cannot imagine life without our cheeky monkeys that fill our lives with much love,, joy, mess , chaos and laughter. I went to school today to help with Literacy in Sam's class. Joel spotted me at recess , ordered the special Wacky Wednesday lunch . He rushed over to give me a hug - then said we eager eyes - can we have some money for the canteen ?

They interact well with each other (when they are not fighting over our  , iPads, TV remote, Lego and who sits in the front seat to drive to the bus stop or a certain rear seat - the one that can see their DAD). Their Bus driver has then well and truly in his sights - in separate seats directly behind him too !

I hope they remain friends!  and also grateful they have each other , living on the farm is a bit isolating.

Happy Multiple Birth Week to all my Multiple birth friends...

Tell me your Multiple story 

 


Saturday 8 March 2014

When Cancer is a Bitch 3

There may be some people that find it hard to read this.

It's complicated.

Once again I have the odds stacked against me. My world turned upside down on Tuesday ; I received the pathology from the soft tissue tumour removed from my left thigh 3 weeks ago.

A rare and more aggressive malignant sarcoma was found inside a large but slow growing benign tumour , I have had that for many years. It was a shock ; even my Specialist was surprised. I guess no matter how prepared I was, it was still an unknown quantity.


In fact, my Specialist surgical oncologist (he is a Sarcoma specialist too) Dr told me the day before I was discharged - he didn't have the pathology results but it had all looked good and he didn't think there was anything to worry about.

Wrong.

This last week I’ve exhausted numerous articles and research results available on the Internet regarding my latest diagnosis Malignant peripheral nerve sheath tumour [MPNST].

WHILE it is rare 1:100,000 - do the maths - only approx 230 in Australia would be affected, it is more common in individuals with Neurofibromatosis 1(a genetic condition I was born with that affects 1:3000 births) with anywhere from 5-10% risk (so people with NF make up 50% of the subset of people who develop a MPNST).


Twelve months I noticed some changes in my thigh lump - more numbness and nerve pain. I'd just finished the 12 weeks of weekly chemotherapy, so I finally went to see my GP about it . I asked for and had an ultrasound. I was then referred to a local surgeon and I waited 3 months to see him - he sent me for an MRI and then a month or two later I went back for review.

HE said he wouldn't operate because it was too close to nerves & major blood vessels etc - he said there was no hurry to do anything because the MRI was fine - just wait to see my Sydney specialist Dr (Breast Cancer , sarcomas & benign tumours) .

It has taken almost a year to get to this point.

I missed seeing Sydney Specialist DR in November because Joel had his hernia repair the day before. I had to wait a further 2 months to see my Dr again because this DR was so busy. I didn't know the gravity of waiting.

Recently,  I discovered through my own Goggling and reading that an MRI cannot always tell if these tumours contain malignancy. Two weeks after I saw my Breast cancer surgeon (originally for review of BC) in January - I was booked into hospital to have the thigh tumour removed and 2 other benign ones.


It is not related at all to Breast Cancer but as I mentioned it is associated strongly with Neurofibromatosis (NF1).

Though the margins (malignant tumour free tissue) were clear it was small margin. The tumour was identified as stage 2 (1 being best - stage 3 worse ; stage 4 means it has spread elsewhere in the body). There is so much more to it and I not sure what else to say about it, and it would waste too much of my energy trying to explain it .

I feel fine apart from residual swelling in my leg and an infection - where my body decided it didn't like the dissolvable stitch knot. The first antibiotics were not working so I was ordered stronger ones. Much improved.

The initial treatment plan - was to have 6 monthly, full body PET scans for 3 yrs and see my surgeon regularly. This has changed now and I'll have  a CT scan in 3 months.

At this stage (stage 2) chemotherapy is not used (Lots of controversy over how effective it is vs the high risks) UNFORTUNATELY - they mostly use the same chemo I've already had so I cannot have it again because I've maxed out my lifetime's limit - it is so toxic and can cause heart damage amongst other side effects.

My Specialist mentioned radiation however his opinion was the risks of having radiation is higher and outweigh any benefits - than the risk of local recurrence (tumour growing back in my thigh) . He will be keeping a close eye on it anyway and if it regrew locally it would be surgically removed - eminently treatable. Still - rest assured I'm getting a second opinion about that from a Radiation oncologist. I have to for my own peace of mind.

Being in limbo is terrifying. I’m lucky to have love poured on to me by such a big community of people, (family and friends included), last time and now.

The risk of distant metastasis (Cancer spreading to other parts of the body [mostly the lungs]) is the same with or without radiation. It's tricky, nothing can predict when,where or whether it will spread or not. The risk is not so much immediate but mostly within 1-2 yrs, up to 5yrs (or more).

The prognosis has not even been mentioned. (I must stay away from Google).
Why ? because is never an easy question to answer. 

My decision-making skills will be put to the test in the next few weeks.I already know the gravity of receiving a life-threatening diagnosis barely 21 months ago. Previously watching my husband go through it too - almost 4 yrs ago. He still needs followup for a further six years.

Anyway, I had more concerns so I asked my local GP for Chest CT scan on Thursday - to especially check if there was anything else I SHOULD know or worry ABOUT. Hoping, there was nothing to worry about and it would reassure me for the time being.

I took the form to Imaging Place straight away. The silver lining of having so many heart scans , ultrasounds, biopsies etc at the one place over the last 21 months - was they knew me well.I handed the form to the receptionist , without a word , she read it and looked at me and said
" I suppose you want this done as soon as possible"

First she said "Can you come back at 3.30pm ? (it was just after 12.40)"  I said "Yes" - then a guy came out , she asked him something and said they would do it right away. I was whipped in there within 5mins, out in 15 mins.

The kicker - I picked up the results at 3pm and there were certainly some things to worry about - 3 different things that indicated a need for more investigations. I went straight back to my GP, however she has gone on a month's holiday. I was able to see another GP who ordered the ultrasounds immediately.

Friday, I had an ultrasound of my sternal notch - The Sternal notch can be found at the base of the neck in between the two clavicle bones. There was some kind of lesion seen on the CT near my thyroid /parathyroid . It may be a benign neurofibroma or something else. My Sydney Dr felt it was unrelated to breast cancer and MPNST - who knows ?? He said because I have NF I would likely have them throughout my body. Most likely I will need a biopsy of the lesion.
.
Monday, I am having a liver Ultrasound because they found one existing cyst, and 2 small unknown spots / lesions on my liver.

I also have some small nodules in/on my lungs. My Specialist said these should be nothing to worry about, lots of people may have them ...are you kidding ? I am more worried about these than anything.

The bottom line - my Sydney Specialist said - that the spots and nodules are too small to be defined or determined exactly what they are - even on a PET scan they likely wouldn't show.

PET scans can detect cancer in its early stages, help to monitor cancer treatment and check if the cancer is coming back. DR said (by phone)- I basically have to wait 3 months and see if they grow or change and have another CT scan / PET scan if they have.He tried to reassure me he would keep on top of everything.

It should be noted that with Breast Cancer (post treatment) they DON'T do any followup and routine scans unless you have symptoms.

Anyway, I made an appointment with a medical Oncologist , at The Oncology centre, for next week (they fly in/fly out from RPA , Sydney) to discuss all of the scans/ultrasound findings hopefully.

I know the intense googling fear and the grief that goes with these diagnoses. So much is unknown. It seems it is going to be a wait and see. So I would appreciate your prayers and positive thoughts.

Every day I wake up and chose how I wish to live the day - in fear or with hope. I am just exhausted thinking about it all.

I not sure what else there is to say - of course I am terrified . The breast cancer history complicates it and so does the sarcoma and Neurofibromatosis. Fear is stopping me from feeling 100% confident with the doctors’ recommendations. Plus the rarity of MPNST.

I already had a sense that - this was not to be EASY. I can't dwell too much on the what if's. It would waste too much of my energy .

I need all my energy to focus on being positive and getting enough information to make informed decisions.

Right now I feel well apart from a lack of sleep , due to worry. My memory is shot.

I can't run YET (Dr's orders] but I am walking no problems at all. I paddled (dragon boating) 8km Thursday night and over 5km this morning. I have a lot more numbness and nerve pain/spasms in my lower left leg (the nerve associated with the tumour was related to my lower leg) but that was expected.

I feel grateful about a lot of things that went right this week despite everything awful , the kindness of people in my medical circle and elsewhere the last few days. The 3 different people/places who let me get my scans/appointments without much delay and that the Breast Cancer Support Nurse (who I paddle with too) was there for me and is going in to bat for me (I should say Paddle) . She is on my TEAM.

My husband is by nature a very calm and measured man.We have endured quite a few hurdles in our 24yrs. He remains grounded even though we have been rocked to the core with this news. He endlessly patiently listens as I tell him what I have discovered. Save a prayer and kind word for him too , he is feeling fragile about a lot of other things too.

I love the mantra it ain't happened till it's happened.

 

Friday 7 March 2014

The Wonder years



As in ...

I wonder where I put my car keys ?
I wonder if I took my pills ?
I wonder why I came into this room ?
I wonder when my Dr's appointment is ?
I wonder where I put my glasses ?
I wonder why I said that ?

I wonder if I paid the power bill ?
I wonder why it is so hot in here ?
5 mins later ...I wonder why it's so cold in here ?
I wonder why my jeans have shrunk ?
I wonder what the speed limit is ?
I wonder if that police officer was looking at me ?


I wonder why my days are swallowed up at a time (all this wondering for a start)?
I wonder why I put that or this there ?
I wonder why the 'things' that I am wondering where I put them, are found only the day after I needed them or 10 mins after I buy a new one ?
I wonder if I replied to that email ?
I wonder if I locked the door ?
I wonder if I turned the iron off ?



I wonder why weight loss doesn’t have to involve countless hours sweating the kilojoules off ?
I wonder if half an hour of kissing can really help you burn in excess of 126 kilojoules ?
Great , so I wonder if to lose 1 kg of body fat in a week and you need to burn an additional 37,000 kJ, ..do the maths how long do you have to kiss to lose a few kilos?
I wonder if this gets you both in the mood - could you could boost your kilojoule burn with extra physical activity in the bedroom ? # see below
I wondered enough so I goggled it and a 30 minute sex session could account for around 600 kilojoules.
I wonder why everything hurts ?

I wonder what this is growing in my Tupperware container ?
I wonder why I can't follow the google maps unless it is the right way up ?
I wonder why everyone asks me where I put their "thingos" ?
I wonder how I spell that word ?
I wonder why things are so unfair sometimes ?
I wonder why I can't make my mind up ?

I wonder if I should buy that ?
I wonder if I should have dessert ?


Oh well YES is always the answer to those last two ...

I am learning to embrace the wonder years .

Haha Edited to add - because I really was wondering this recently too but I forgot I had even wondered it, to mention it - I wonder why so many of us sign off SMS/text and email messages sent to random people and URL friends and people we haven’t met yet with X & O's as in xoxoxox - read this funny post on has the online cup of affection runneth over.

What do you wonder ?
xoxoxo

Linking up with Grace - FYBF.

PPS: LOL - I just told my husband about the bedroom activity - he said I wonder how they test these things out ...