Four Years on and Thymoma Returns 2013

Long time since I've put thoughts on paper.  Work has been busy.  And I didn't think I would be writing about re-current Thymoma again.  It was very difficult for me to hear the words once more ... time stopped for a short moment the afternoon of 28th Feb 2013.  I only heard the words Cancer-Returned-Left Lung.   My heart raced, my skin crawled and suddenly I'm unable to control my emotions, body language ... everything.  This unwelcome and uninvited life partner invaded my body again.  I recall hearing the voice on the other side of phone .."There's a nodule in the left anterior chest wall". Why me I thought.  I only have on lung - don't do this to me.

My first thoughts were how can this happen, I've been working so hard, I'm not ready to die, I'm preparing for a Cancer Fundraising Walk on 9-10th Nov and I just have to be there .. the narrative was endless. Good thing was my doctors where there to catch me as I was free falling ... I was in safe hands and within a day we planned our attack.  Decided to wait for 4 months for any changes to determine whether in fact it was thymoma or perhaps just a lymph node behaving badly.

The PET soon confirmed an SUV of 2.4 (hardly and issue in the eyes of the specialists).  I didn't agree as regardless of an uptake ... any level of activity in a cell is a cause for concern. I wanted the nodule removed immediately   Brian agreed, but was more cautious than I given the risks of operating on someone with only one lung.  So, a date for surgery was scheduled for July 9th - exactly 4 years since the initial diagnosis.

I needed an anchor?  What could I control?  The immediate answer was 'My mind, my thoughts, my images of good health'.  So, I took time off work, got on with yoga, meditation, mindfulness and spoke to my wonderful oncology counsellor, Angela, who quickly made me realise that anything I was doing which didn't contribute to my health was in fact A WASTE OF TIME ... I was on track. What a life saver!

Since Feb 2013 I haven't looked back.  Latest CT indicates I'm clear .. I've conquered it again.
Stay positive, focus on where you need to be, don't look back and most importantly surround yourself with positive people xx

Testing the oxygenation - 100% (tick)

Testing breathing capacity - 45% (tick)

Ready for surgery - afraid

Scar one week post Left Anterior Thoracotomy

Three Years On - What a Day!

The three years since surgery came and went on October 13.  We had some friends over for dinner that Saturday night and whilst we were reminiscing about the good old days ... I realised it was my anniversary!  Cheers had a wonderful glass of red.  Living with this illness is possible.

Here are some of the things that brought a smile to my face today.

New Year Resolution 2012

It's that time of year again!  Where did it go.  I returned to work full time and part of the most fabulous team.  Everyday I seem to learn something new about myself and new capacity. 
The New Year will soon represent 3 years since diagnosis and every 6 months there is a blessing every time I hear Martin say ... CLEAR.
Yoga has given me a new pathway to finding clarity during the day to day hectic ritual.  My work role happens to be centered around other people's problems thus yoga allows me to release all of the negative energy, take the time to breathe in clarity and purpose during the quiet hour of practice.
Nothing but the moment matters and that is exactly what the purpose should be.
The resolution will be a stronger reminder to focus on the self.

New Year Resolution for 2011

This year, I want to surround myself with 'like hearted' people and practice yoga every day to develop a healthier body and mind.  I don't think I mentioned the practice of Yoga earlier so I wanted to let you know how it helped me post surgery - physically and mentally.

I joined a local gym 6 months after the lung operation (in mid 2010) to help me gain strength and flexibility in my shoulders and back.  Four months of physiotherapy did not improve the level of stiffness I experienced in my right shoulder/rotator cuff.  There is a significant amount of scar tissue left in this area after the lung is removed.  The illustration below indicates just how close the shoulder muscles are to the lung:

Due to the operation on the right side,  I began to favour my left side and as a result my spine and neck became misaligned. The gym specialised in Yoga, Pilates and the added bonus was the 25 metre heated pool.

My first session of Yoga was amazing.  The instructor talked us through the Asanas (poses) and how yoga increased self awareness, self centredness, clarity and balance.    Our energy levels vary from day to day.  Some days we feel tired and others we are abundant with energy.  The practice of yoga allows us to discover the areas our body is strong or weak.

When I practise Yoga, it feels like I 'unblock' the energy that has been locked in the nervous system.  In between poses, the body tingles and the more you hold an Asana beyond your limits the deeper the relaxation.

The most significant change I found practising Yoga was the improvement in the breath and overall flexibillity.  Yoga encourages correct breathing and my left lung was able to receive maximum air.  Pure, oxygenated blood circulates through the body, keeping it healthy and free of disease.    To breathe fully with one lung is challenging but it can be done.  Feel your stomach expand ... then draw the air up into the lung.  The rib cage slowly expands sideways as air fills the lung.  Imagine breathing in PURE air that will lubricate and heal the body.  Somehow, the act of breathing in a quite space clears the mind and makes one grounded.

One thing is for sure, the mental and physical disciplines I've learned from Yoga helped me overcome the physical and mental limitations I placed on myself.  Yoga has given me greater balance, strength and it continuously soothes my mind.  Give it a go!

Happy New Year - 2011

It's amazing what one can achieve when given a second chance in life ..... fifteen months after surgery.

New Limitations

There is very little information about recovery after a pneumonectomy and the effects on the physical, social and lifestyle activities of previously healthy and active people.  I loved to run, complete demanding spin sessions at the gym and swimming a kilometre at a time was a form of meditation for me.   Would I ever be able to do that again? Did it matter?  What would my new limitations be?  Here are some hints:

Shortness of Breath: most things will be exhausting for many months.  Twelve months post surgery, I still struggle walking up the stairs but I'm improving every day

Lifting: don't do it

Daily Living: Showering and washing your hair will be a challenge for several months so ensure you have someone to help you

Sports and Fitness: I changed my spin classes to Yoga and 5 months post surgery I started swimming with a kick-board and flippers.  Initially, I could only swim 50 metres but now I can swim that very important kilometre - with kick board and flippers.  My recent attempt at freestyle lasted 50 metres ... and that is OK with me.
Epigastric Symptoms: You may feel you have something wrong in your stomach post surgery and get used to the RURR RURR sounds.  It doesn't hurt, just uncomfortable

You will begin to accept your new limitations as a result of the limited respiratory reserve.  People won't realise the significance of your limitation because outwardly .. there are no visible signs.  Be positive and accept that your new way of life will not be going away.

Modify your lifestyle in order to get the best out of it.

Day 4.  First walk without oxygen.  Loaded up with Oxycontin.

Day 5.  I asked an exercise bike be delivered to my room so I can start the transformation.
Five-Eight minute cycles at a time made an enormous difference to oxygen saturation 

Day 7.  A miracle.

Week 8.  Take as many pain killers as you need to enjoy the best thing life has to offer. The pain will go away.

Grin and Bear it!

I knew early in my diagnosis that I would eventually need to have the lung removed.  But, after my last session of chemo it was all too real.  There was no turning back, in 4 weeks I would need to learn to live with one lung (45% breathing capacity).  I was told my right lung, pleura, diaphragm and maybe the lining of your heart will be removed -  Pleuropneumonectomy,  I was weak, emotional, shocked and cried uncontrollably.    Prof McCaughan handed me a tissue from the other side of the large table and said 'It's OK, almost everyone cries here on Fridays.  It's usually the day I tell the patient what I will be removing'.

As told by Jocelyn McLean, Prof McCaughan's personal Nurse, a pneumonectomy is one of a number of operations that provide the only chance of a cure for many lung cancer patients.  I don't have lung cancer.  Thymoma is very different, however, it had spread to the pleura and given it was spreading around the lung I was treated similarly.

The most important question on my mind at the time was 'How would I handle the pain?" I was told there was no bigger operation than a lung removal and to expect uncontrollable discomfort.   Looking back, post operative pain was truly uncontrollable.  If I told you it felt like having electric shocks, being branded by a hot steel rod, trampled by horses ... it wouldn't be enough to describe the level of pain I experienced.   Severe pain is the most significant factor as a result of the necessary coughing, inability to breath deeply and sigh.  Preventing pain wasn't as important as relieving it.  I was taking copious amount of Endone, Oxicontin, Indocid (both fast release and slow 12 hour release dozes).  I found Indocid suppositories to be one of the best for immediate pain relief - even thought it's used for inflammation, swelling, stiffness, and joint pain ... it worked for me!

I read extensively about the potential of becoming addicted to these drugs and the common withdrawal symptoms.  So, I took particular care and diarised every doze taken every day, time and place. Understanding how to manage your own pain is essential before you are discharged, so make sure you practice in hospital by working with the medical team and understand what tablets are to be taken when.  Don't try to be a hero and miss out on a doze .. it's not worth it.  Obtain the hospital and your case manager's phone number and call them every few days to ensure you are on top of their mind!

Finally, surround yourself with the people that love you and support you.  I was rarely left on my own and always had someone around to help me walk, shower and generally get around.  My home was my haven.

Don't be shocked by the following pictures ... if only I could have found some on the net before my operation.

One more kiss before being taken into the operating room.  How wonderful it was to take my last full breath.

ICU in Isolation - the pain was unberable

Three days post surgery - incredible recovery thanks to Oxycontin 

Swelling is normal and will last for several months.

Myasthenia Returns

Well, its been three months since I've written.  Lots has happened.  I returned to work, but after only 4 weeks I found my Myasthenia symptoms had returned.  I haven't had any symptoms since 2006 and not sure why the droopy eyelid and double vision are back.  I'm sure it's only temporary - I'm not worried.   There could never be anything more frightening than cancer.  I'm currently working through the Mestinon and Prednisone levels to determine the best ratio of medication that will result in me returning to full remission.

Myasthenia Gravis is an autoimmune neuromuscular disorder.  Noone in my family has ever had any illnesses ... so I'm not sure "Why me?".  The condition is characterised by varying degrees of weakness of the skeletal muscles of the body. Certain muscles such as those that control the eye and eyelid movements, facial expression, chewing and talking are effected.  The muscles that control breathing may also be effected.

It's an odd disorder and occurs when normal communication between the nerve and muscle is interrupted.  In Myasthenia, antibodies block/alter the receptors that send the message to the muscle thus the temporary weakness.

The Thymus Gland, which lies in the chest area beneath the breastbone, plays an important role in the immune system in early life.  The gland is large in infants and reduce to the size of a small pea in adulthood.  In my case, the gland was enlarged and in 2006 it was removed.   Thymomas are generally benign and I'm one of a rare few that somehow achieved to be diagnosed with both, in addition to Recurring Thymoma in the lung 3 years later.

The relationship between the Thymus Gland and Myasthenia is not yet fully understood and there is no correlation between high antibody levels and active Thymoma.  As far as I'm concerned, as long as Cancer doesn't return ... nothing is a problem.

Here are two photos.  One taken in 2006 and the other today! Dont worry - it's not as bad as it looks!

Eating for Recovery - What I've learned

The Gawler Foundation and the books recommended in this blog should provide you with sufficient evidence that 'food is medicine'.  If only I had come to that conclusion earlier! 

Its really simple .... Cancer is multi-dimentional and no-one really knows why one person gets it and another doesn't.  In my case, I was healthy, exercised, never smoked and ate good foods.  However, in addition to genetic predisposition and various other elements ie smoking, asbestos etc, cancer has been found to be aggravated and stimulated by inflammation and stress.  Our western diet is highly inflammatory caused by foods such as meats, fats, refined sugar and chemical additives.

To give you an example, I had three PET scans where radio-active glucose was injected intravenously.  It took approximately 60 minutes for the 'radiotracer' to travel through the body and to be absorbed by the cancer tissue being studied.  The tumour loves the glucose/sugar and feeds on it.

The basic principles are:

• Rethink your lifestyle and base your diet on vegetables, grains and fruit
• Where possible use chemical free produce.  Plants produce phyto-chemicals which are like 'natural pesticides' that stop plants from being eaten by insects. When plants are sprayed with pesticides - you will absorb those chemicals.
• Steam, dry bake, wok saute but don't deep fry.  In human history frying food is a relatively new way of preparing food. The heat of frying changes the chemistry of the fat molecules in the food. Our bodies are not adapted to take care of these fat molecules altered by frying and on a biochemical level the altered fat molecules interfere in a negative way with the functioning of the cells. 
• Keep your body Alkaline and remove all acid forming food such as meat, soft drinks, salt, sugar, jams, pastries, white breads .... refined, sweetened and processed foods!

Anti Cancer Foods:

• Cabbage, cauliflower, brussel sprouts
• Turmeric/Curcumin
• Pomegranate
• Broccoli
• Spinach
• Vegetables juices at least 3 times a day (as per the Gawler Diet)

What to expect from Chemo

I'm sorry its taken so long to write another blog entry.  I've taken up studies and it has taken up most of my time!

Today's entry will focus on how I reacted to chemo.  Don't forget that everyone is different! So, you may experience various other symptoms or maybe no symptoms at all.  Taking copious amounts of other drugs whilst having chemo is the norm. Namely to treat nausea and vomiting as part of chemo treatment.  One of the drugs administered for the entire 3 months was Demamethasone.  It is used to relieve inflammation in various parts of the body and decrease swelling associated with tumors.  However, be warned ... it increases the appetite, will cause irritability and insomnia.  I also experienced fluid retention and over the 3 months I put on approx 7 kilos.  It may not sound like much but standing tall at 160cm - its approximately another dress size!

I had 4 chemo cycles and felt quite average after each one.  Exhaustion was an accumulative effect and found myself sleeping more and more.  However, after the 4th or 5th day post chemo, the sky opened up again.  I began to smell the flowers, hear the breeze and the birds, crave healthier food and wanted to go out an exploring. This is probably the most important time to have family and friends pop by and prepare you lunch or dinner.  I could not imagine what it would be like being on your own.  I had very little energy to do anything but go out for short walks and rest.  So, be kind to yourself and listen to your body.

I didn't look forward to the 15-17th day post chemo.  That was when my body had reached it's peak again, while blood cell count (lymphocytes) had returned to normal thus time for another cycle.  Lymphocytes are a type of white blood cell that's responsible for protecting the body against bacterial and viral infections.  They are made in the bone marrow and when the blood cell count is low after chemo - infection is a high risk.  Make sure you stay away from anyone who has the slightest sniffle.

Next entry will focus on what I learned about the food NOT to eat and the importance of creating a cancer unfriendly environment in your body!