Time is priceless, but it’s Free.

"Time is priceless, but it’s Free. You can't own it, you can use it. You can spend it. But you can't keep it. Once you've lost it you can never get it back" - Audrey Niffenegger



Writing this on new years eve reflecting on the year that has been.

Recapping:

• At the age of 26 (just before my 27th birthday), on the 24th of february, I made the choice after countless MRI's and ultrasounds, numerous biopsies and fine needle aspirations, after seeing a malignant appearing lesion on my breast ultrasound, after hundreds of trips to Caloundra and Buderim seeing specialists… that it was time to remove my breasts. I underwent a double mastectomy. 

• Prior to this surgery however was of course naked photo shoot with a snake!! AS YOU DO apparently thank you amazing Bambi and Kimberly!

• Fortnightly visits to the beautiful Lisa Creighton to have my expanders assessed and filled following the mastectomy.

• In April I decided that we needed to fly to Adelaide. Graduating from my Masters of Sonography a definite highlight! Being able to share this with my proud mum and Dad, as well as Brindy and Rod made this perfect!

• Beginning of June sometime….. Kicked in the mouth by horse. Lost 3 major teeth and chipped two others, busted lip, and torn lateral meniscus in right knee… Emergency dental work performed!!

• June 18th was round two for breast surgery - transition from breast expanders to implants. A very welcome surgery that I coped with much better then the first! Although being swollen and bruised, I was enjoying the swap to the comfy non hard implants!

• June 21st - Found out I was pregnant (a couple of days after last surgery) - confirmed on ultrasound. Panicked phone calls to anaesthetist, surgeons, obstetrician etc

• July 16th - A very hard trip back to the operating theatres at Buderim Private as we said goodbye to our son who was not strong enough to hold on.

• October 8th - Both ovaries and tube removed. Followed by starting the full blown HRT.

• Beginning of November - New permanent teeth put in!

Lets face it…. what a shit year! A year that I am very glad to see the end of. With so many down points all I can honestly see is the good. 

I can see that my body, although very different to what it use to look like, does not have a looming scary very high percentage of breast and ovarian cancer lingering over it. My stats now are the same as yours… if not lower! (or non-existent when you count in that I don't have ovaries any more!). Although not an easy choice to make with many hours of counselling and self reflection, I stand by my choice. That is the biggest part of this though… MY CHOICE. I know that if faced with a similar situation others would react differently, however when it was time to say yes or no, a beautiful friend told me to close my eyes, and ask myself the question… and then listen to the answer. I knew when it was the right time.

I have updated now the photos for post op - as before I have put them into a separate linked page with the other surgery images. I have explained previously that I share these images for those who are contemplating this surgery. The images are confronting - some of them straight post op. When making an informed decision re surgery I felt comforted by seeing the results of others that had finished. Please respect the reasons why I am sharing them and do not follow the link if you do not wish to see surgical images of my boobs!

Password is foobs25

http://s1220.photobucket.com/user/TeamTamRod/library/Journey%20of%20the%20Foobs

The hardest part of this journey was saying goodbye to Finley. Our littlest miracle who is now by far, the brightest star in the sky. We think of you everyday and it was unfair you were taken from us. You were just too beautiful for this world and we are thankful for the joy you bought us, even if it was only for a short time. 

~~~~~~~~~~~~~~~~~~~~~~

I have been sitting here for a while now trying to find the words to express how I felt about this year and everything that we have been through… strangely though none of what is going through my head is what I have been through...

I am thinking about my patients… whom with the results of what I see on a screen can dramatically change their lives. There are numerous patients who I have had the pleasure of meeting this year, some have since passed, who I will never forget. Patients who prove that when faced with the worst situations, the best in them comes out. Patients who I get to share their exciting news with. The patients who always greet you with the warmest smile and hug you could imagine. Patients who speak their minds and are not afraid of what the people around them think. The most honest humans who are just magical to meet. Thank you for letting me be part of your lives! 

I am thinking about my surgeons… The amazing Dr Lisa who not only helped me through emotionally this year and has given me great boobs in the end! But she has / is looking after so many others in the same situation as me. A truly caring soul who goes out of her way to make sure you are ok! Even when I was in surgery under a different doctor she ran in to give me a hug! If you are reading this as one of Lisa's patients… you are in amazing hands. Trust her! 

My amazing Dr James… you have been there from before the start of this diagnosis and haven't left my side! How often do you walk into a consult, or into surgery, only to be meet with an enormous hug! Or similarly when I am sending PhD emails from my post op hospital bed and get a text message just saying "Go back to bed Tam!". The most amazing person and caring Dr. I am SO proud to call you a now supervisor for my PhD!

I am thinking about my work family…  both Cooloola Radiology in Gympie and QLD Vascular. You have all supported me so much this year and I thank you from the bottom of my heart. We all have so much to look forward to in the coming months/years together. Better times are ahead for all (and more 30 second dance parties are required!).

I am am thinking about all the amazing times I have to look forward to with my family. I can't wait to cause mayhem with my sisters by my side, to have a rum with dad, to just cuddle with mum. I can't wait for overseas adventures with Rod and Brindy and simple moments of just being together as a family. 

I am thinking about my amazing and beautiful friends. You know who you are and how much you mean to me. Bring on exciting times ahead of weddings, horses, dancing, babies, love, magic and much drinking!! "Don't you think it's better to be extremely happy for a short while, even if you lose it, than to be just okay for your whole life?"

I am thinking about horses and competing, training dogs, and flying higher in the sky then ever before.

I am thinking about my floppy hat that will mean you will all have to call me Dr Tam!

So many things to look forward to… Why would I want to stop and think about the cancers that would have taken this from me? 

I was unlucky enough to be given this gene… I have done everything possible for it not to take me. I have too much stuff still to do here…



To a better and more amazing tomorrow…. Cancer Free… Take that BRCA1!!

BRING ON 2015!
Happy new year everyone. Thank you for sharing this journey with me. 

An ovarian adventure...

So... There has been much build up to tomorrow. The what is expected to be final surgery in this nightmare of a journey.

So the decision to remove all of the potentially dangerous tissue in my body due to having the BRCA1 gene, or breast and ovarian cancer gene, started with the double mastectomy, followed by reconstruction. After finding suspicious lesions within one breast this was a very easy choice. Either have the surgery now, or wait till this lesion was multiple and having to go through chemo and radiation. Although an uncomfortable and still slightly awkward process, not to mention I still wake up with stinging down one side of my right breast, this part of the journey made sense. 

The next part although the much easier surgery... For me was the harder choice. I am only 27. I do have the most beautiful daughter. However what most of you do not know is that she was a miracle on her own. We had a small 7% chance of actually falling pregnant, and by some miracle it happened. Due to a uterine malformation we were expecting the arrival of a premmie. After a placenta rupture at 29 weeks gestation our amazing life became even more beautiful. Brindy spent a long 5 weeks in NICU at royal wemons hospital followed by another 2 weeks in special care at nambour hospital before we came home. Although a difficult and emotional time our little girl was strong and made this journey easy. 

The opportunity to have a second child was discussed but ultimately Rod and I made the choice that we were not going to have anymore children after this. The risks involved in having a second were high with the outcomes likely to be not as lucky first time round. 

I wanted to explore all options prior to commiting to the oophrectomy. We talked to IVF and the possibility of genetic testing the embryos for the BRCA1 gene. Due to very very very low egg counts the possibilities of this were slim on its own. We looked at the realistic possibility of trying again but ultimately with IVF or not I just do not have the ability to carry babies long enough. Many drs have said it... Our beautiful Brindy really was a fluke. We got lucky with all odds against us. 

Further to this after the bloods results and tests the likelihood of early menopause were increasing. 

Even if we wanted to really try again our chances were slim to none... (This coming from a previous chance of 7%!!).

So... After exploring the many emotions and morals related to this surgery I decided that I would rather be here for my amazing family than find out if have an ovarian cancer which there is no treatment for. 

I had made this decision prior to my reconstruction. 

Whilst in hospital from my reconstruction I was struggling with recovery. I had a lot of trouble with nausea which at the time we thought was a reaction to the anesthetic/amount of drugs I was on. Maxalon helped and three days later I came home with my new boobs! 

Although discussing with my surgeon to hopefully go smaller (aiming for B's) with my size, to Rods amusement my boobs were measuring closer to a D cup! To my amusement... 10 weeks later my boobs are down to a C. So essentially back to normal at least! 

When I sit, stand, lay they really do look normal. It's only when I ... Erm... Pretty much on all fours ... They don't quite look right! But hey... No one sees them like that! So very happy with the result! And I know I have not updated the post op gallery yet (see previous posts for links) but it's coming!!!!

So we returned from hospital after the recon, and three days later I'm still throwing up. I started throwing up more with the smell of eggs, and patterns in nausea started appearing. You catching up to what happens next??? Yep.... Somehow... I was pregnant. 

At first I hated the fact I was pregnant. To start with I had just been kicked by my horse and lost my front teeth which involved hours of dental repair. I had just had major surgery again. I had been taking a massive cocktail of drugs including sleeping tablets and anti inflammatories. Prior to hospital I had no symptoms, regular periods, nothing had changed. 

After many panicked phone calls to surgeons, aneathetists followed by blood tests and multiple peeing on sticks cause I still couldn't believe it we started getting use to the idea. At the soonest chance we had an ultrasound with my gynaecologist which showed a gestational sac with a tiny fetus and a flicker of a heart beat. 

My hate very quickly turned to excitment and love. We had plans quickly for a doing up the nursery again and buying Brindy a new big girl bed (and redoing her room!!). We opened our hearts very quickly to this, our second miracle, who was obviously telling us that he needed to be here.

After returning to work I just couldn't help but have a little look at my new miracle so... As you do... Did an ultrasound on myself. 

Sadly our little miracle was strong but just not strong enough... There was no heart beat visible. 

The hardest part of this was waiting to actually miscarriage. I had pregnancy symptoms still, was throwing up constantly. When your pregnant and throwing up you try to tell yourself that it's worth it, your hormones are strong, that means baby is strong. When you throw up knowing that you have already lost him .... Well. 

10 days later we had to schedule surgery. Once again I found myself back at Buderim private hospital for a d&c. 

Coming to the reality of having another baby, fighting in brisbane for his life, me fighting for my life. The reality was we would have done it, we would have made it through. But the thought now terrifys me. 

Losing my son, although only 9 weeks old, was my defining moment. I know that this is the right choice. I need to be here without a high risk of ovarian cancer weighing over me, over us. 

I started this blog saying I would be honest with my journey here. I am not looking for sympathy, I am not looking for sorrow. I do however wish to create awareness that although a hard decision this choice is not for everyone. It is a very personal choice I'm making to stay by my partners side and to be here for a very long time for my daughter.

Also how would I ride my horses if I'm not here??!? 

So tomorrow my ovaries are being removed and I commence taking further HRT. Another journey all together. 

Wish me luck. 

I was given a bear whilst waiting for my d&c. This bear was donated by another family who also lost a child way too early. Although I walked away from hospital without my Finlay, I did have this bear which in someway really did help... I wasn't quite empty handed. 

Within the card on his chest reads

"An angel in the book of life, wrote down your baby's birth, and whispered as he closed the book, too beautiful for this earth."

The link is below if you wish to donate like we did. 

http://www.bearsofhope.org.au/a/314.html

Who is ready for Round TWO????!?

Not only are we watching round two of State of Origin (GO QLD!!) but we are gearing up for second surgery tomorrow. I have just had a phone call from my surgeons office confirming times so now anxiety has hit!

I have had a total of only 190 cc filled into each breast (within the expanders obviously) which overall is smaller than my previous size which I am happy with! I'm too active and given the opportunity very glad to go smaller! I'm pretty sure Rod will never forgive me for this choice though! 

I honestly can not wait to see the end of these hard plastic, lumpy, hard edge, uncomfortable expanders and swap to the smooth silicone! Overall I have not had to many dramas with them compared to others. I still get painful stinging when I lift my arms too high which feels as if the scars are about to separate. This more happens whilst I am sleeping and wake up with the horrible pain and an arm that can't move.

I am nervous obviously about the general idea and outcomes of tomorrow but the hardest part of the mastectomy is done so just keen to get it done. 

It's been a difficult lead up with numerous completely unrelated medical issues sadly happening. The largest of which involving my horse and a gate resulting in 5 missing teeth, busted lip and a tear in my lateral meniscus on my knee. All of which we will deal with after this surgery! 

This journey of eliminating any possible cancer also involves my ovaries as well. The BRCA1 gene is associated with ovarian cancers also which sadly there is often no cure due to the late ability of diagnosis. In preparation for my ovaries also being removed later in the year, I have started on HRT or hormone replacement therapy.  We are slowly introducing the hormones to not send my body into complete shock post surgery. 

I would honestly love to thank everyone for their support during this journey. My blog has reached over 10,500 people and I can only hope it has enlightened, educated, helped others in this situation. 

Kick off is about to happen, GO QLD! 

I'll update you all post op from hospital!

I'll leave you with one of Rodney's quotes  from this experience.... "Nipple reconstruction??? You will be constantly high beaming won't you... Everywhere you go people will be turning the air conditioning down."

Tammy xoxo

Coming to terms with the "before" and "after" of a double mastectomy

So not much has been happening on this end… Its a matter of just waiting and letting things settle. Going to be honest though, I was not expecting these expanders to be as horrible as what they are. It is 6 weeks post op today and I still am on cocktails drugs (only predominantly paracetamol and ibuprofen) but still a lot of it! I still have too much fluid on one side so have yet to have my first "fill" into them so still sitting at the standard 100cc… Honestly loving not having the hassle of boobs!! My other breast had mild rippling of the overlying muscle so just waiting and letting things settle. We are hoping after the Easter Bunny visits we may be able to inflate them mildly than start thinking towards the second surgery.

Its not all bad though. I am able to slightly lay on my stomach now which is a HUGE bonus! I stack pillows up in front of me and can now somehow get to sleep! YEW! I have woken up a couple of times though with my arms way to high and this horrible burning sensation rips through my scars. I have had to ask Rod to make sure I was still in one piece on more then one occasion. The other weird sensation that I have also seen mentioned on one of our chat rooms is the nipple sensation… You know ladies when you walk into a cold room and uumm… well… everything stands up! That is a weird sensation to have when you don't have nipples!!!!

It has always been my intention with this blog to be as honest as possible, including posting images of surgical scars and updates. However with almost 10, 000 views on this blog you can image I have been a bit overwhelmed to post photos of my boobs…. or foobs… or at this stage lack of either just in case they were taken in the wrong context!! In the lead up to my surgeries it was however photos of post op scars that lead me to my decision. Seeing what other women had been through was not only empowering but very educational. I learnt quickly what to expect and although it is difficult waking up and seeing the lack of tissue on your chest, at least you have a vague idea what is coming.

So... to not offend people, to not let you miss out on these updates without having these images daunting you, but to still give those who really need to see these images, the opportunity is here. If you follow the link below it should take you to a photo bucket library with images before, 1 day post op, 1 week post op and 4 weeks post op.


Password is foobs25

http://s1220.photobucket.com/user/TeamTamRod/library/Journey%20of%20the%20Foobs



As above I am only sharing these to help others who are facing this journey and NEED these images. I strangely have no attachment to the before photos now. I feel as if they are just images and nothing more.

I have met so many people by making this journey so public and love hearing your own journeys. I have met so many through pink hope, as well as the BRCA support groups around the world. I feel so blessed to be able of so many lives and help educate/ support others in making this decision.



On a slightly different note, I took the opportunity to fly to Adelaide to graduate from my masters degree whilst I have been unable to work. It was a wonderful experience to wear a gown and hat again… however I think I can hear my PHD calling!!??!!

xoxoxox

ONCE YOU CHOOSE HOPE… ANYTHING IS POSSIBLE

Thank you.

Having the BRCA gene, no matter your age, family history, or socioeconomic status, it is certainly going to honestly feel like you have just walked into a nightmare somedays. Everyone who has been diagnosed with this gene has their own story which when you compare them are all scarily similar. We are all under the constant pressure and stress every time we feel a slight twinge or that area in the left outer quadrant just feels different to the rest. The mind games you play with your self that you swear you saw something on that ultrasound, and the nervous wait for your MRI results hoping not to be taken through for yet another core biopsy. Every tiny change is scrutinized and although you try and play it cool, you always have that one word screaming inside... Cancer. 

I am 27. I am a qualified general sonographer with my masters specializing in venous incompetence ultrasound. I have a beautiful family. My amazing two year old miracle Brindy and my perfect partner Rodney. We are surrounded by the most amazing family and friends. I am also BRCA1 positive and on the 25th February underwent the first stage of my preventative surgeries, a double mastectomy, nipple sacrificing with expander insertion. I have two incredible surgeons. My gynecologist actually called me up before I got the chance to call him with the results, just see if I was OK. I feel as if I have the most amazing support network to guide me through this. 

However lately I have been thinking a little bit closer at what the people around me are going through? Rodney and I have always had an amazing ability to communicate well with each other... until this came along. I struggled to open up to my feelings regarding the gene and more found I could not talk about the stresses of it (hence why the blog was started). Rod simply held my hand through every step, not once judging me for my choices. Although he desperately wanted me to make the choice to have the preventative surgeries he never once told me this. This was a very personal and difficult situation which I had to find my own way through. This is extracted from his post he wrote:

“I always wanted Tamtam to have this surgery, for selfish reasons, I love HER, I have found somebody who I want to grow old with, to raise our daughter with (everybody who has seen our 2 year old agrees that she is amazing), to have a peaceful and meaningful home life. I have looked at what having this gene means and know within myself that this is the right choice for our family. It has still been Tamtam's choice but I am glad she has made it.”

Although he had lightly mentioned this in passing to me, this was the first time I had really understood what he was going through. Coming along to every scan, biopsy, Dr’s appointments I could tell he was struggling but tried to just play it calm. This point hit the hardest coming home from hospital after my double mastectomy. The amount of stress Rodney was under was immense. The pressure of me going through surgery, waiting for biopsy results, and still trying to keep everything together for our daughter was a struggle, but he did it (I am unsure exactly how much beer was drunk each night though!!). I appreciate how much he is looking after me, cooking me dinner, driving me to appointments, has my drugs sorted and written on the board. I do know this has been more of a challenge for him than me.

We have no family close to us, and although I know I have support from my family in Bathurst, Perth, Canberra and Brisbane, it does make it difficult. I can only image the pains my oldest sister is having watching our middle sister has cancer, followed by my mum and myself having drastic preventative surgeries. My oldest sister is blessed to not be a carrier of the gene but watching does not make things easier. Likewise with my middle sister who bravely is now 2 years cancer free *Insert happy dance here*, but had to watch from a distance me having the surgeries.

My parents have both been an amazing support. I know for my mum she feels a lot of guilt and blame as if it was her fault the gene was passed on to me. I know this feeling to a lesser extent, the fear that I have passed this on to my own daughter haunts me. These words are from my mum:

“As a mother you never want to see your children hurt or sick. It was the worst year of my life watching Jessica go through the chemo and radiation. I hold my breath every time she goes to see a doctor. I am so pleased that now you will be spared all that and you can get on with being our beautiful Tamara.”

My friends have also been a beacon throughout this. From texting and calling, dropping in DVDs, pedicures, and some even seeing my scars, have all been so supportive. 

I actually have just had my second photo shoot with Bambi, and although still working on the fine art masterpiece, she took some photos of Brindy and Rod with me. I know how talented Bambi is and that her creativity of my three stage photo will be AMAZING... it is these unexpected photos of my family that have captured my heart. Thank you Bambi for just being you, and for having such supportive and encouraging words regarding my scars... you were, apart from my surgeon and Rod, the first to see them which on its own was in some ways was honestly worse then holding onto that 8ft python! Thank you xox

I received so many flowers, chocolates and gifts throughout the last week... In fact I write this whilst mindlessly eating my way through a packet of favourites... There was only one Crunchie in there though! Disappointing!!!!! As much as I love them (my family not the chocolate) and appreciate them, it is my family and friends who deserve to be spoilt. You have all been my strength and my courage. Without your support I could never have gone through so much. 

Although I have been scared and confronted by this gene, I know there are so many people around me who love and care for me, who are feeling even worse. I am just letting you know how much I love and appreciate you. 

With two more surgeries coming up I know I will need everyones further support. This is a tough journey but glad I can share it with you all.

Tam 

xox

And a sneak preview of what is coming from the fine art masterpiece!! xoxo

Tissue Expanders

There has been many questions regarding what exactly my expanders are.

Essentially I have two hard plastic "balloons" which have been placed behind my pectoralis muscle (the major muscle which runs underneath the breast tissue). Over a period of a couple of months these will slowly become inflated with a saline solution. At the moment I have about 100cc of fluid in them which was done during surgery. Using expanders this way allows the tissue and muscles to settle and relax prior to inserting the final implant. Essentially results in a better cosmetic result. 

These certainly are not the most comfortable and at times I do feel pinching and pulling from the muscles. The harder plastic does make them difficult to rest on and with the help of a lot of pillows I can now roll on my side. Yew! 

Pain wise doing well though. It's difficult to sleep but I honestly think that is because I can not lay on my stomach! I keep getting into trouble for doing too much but I am trying to take it easy. The hardest thing still is not being able to pick up Brindy. :-( 

Image extracted from www.vanlaeken.com - tissue expander reconstruction.

I am currently trying to find more details on how many people in Australia have actually had this procedure. Not coming up with too much at this stage! I'm intrigued as a couple of the nurses mentioned I was the first one they had seen with expanders. I'll get back to you on this one!! 

And an update on my car... Nothing major... Just an entirely new engine required!!!! Ggrr!!! Not exactly impressed as it's only 4 years old!!  Anyone know any good reliable runabout small cars they could highly recommended?!?!?

Love you all.

Tam

Xoxox

Boredom

I'm not one to sit still for long. So put into a situation where I get hot sweats and dizzy, not to mention increased pains when I'm up for more than 5 minutes is not only uncomfortable but painfully boring!

I was so excited to have two amazing friends come round yesterday who bought my favourite BBQ shapes and chocolates. They also surprised me with a pedicure which was just heaven. My feet are still feeling silky 24 hrs later! Georgie and Kate thank you. I smile every time I see my gorgeous nails! 

The girls had their nails done as well. 

Rod fixed my iPad which hasn't been working for months, so I'll be able to start editing my masters book. Aim is to have two ready for publishing by the end of this! 

I of course have the company of my beautiful cat who hasn't left my side since I've been home. Love this boy. 

The other painful bit is staring at my walls which we haven't painted yet. Feel like I'm still in a fruit bowl. Horrible greens and purples everywhere!!! One day we will have the chance and finances to fix inside!! 

Despite being bored and seeing jobs everywhere that need to be done, feeling rather uncomfortable today. I understand my surgeon had to make an incision through part of my muscle. I believe it's this that is most uncomfortable today. Midline chest is very tender and is making my breathing feel mildly limited. More constant discomfort and cramping sensation. On the plus side the expanders themselves don't feel quite as painful today. 

My movement is slowly getting more. I am being cautious not to push it. 

All in good time. 

Xoxox