Coming to terms with reality

I sit here and feel like its not even my life any more......

I have been diagnosed with Multiple Myeloma - a rare form of cancer of the plasma cells. Statistics say that out of all forms of cancers, it comprises of only 1% and the patients are generally above the age of 60 and mainly men. What are the odds of a 29 year old female being diagnosed with this disease?

I have always battled with sickness for most of my life. I was diagnosed with Hypothyroidism at the age of 12 and then lupus at 17. As a consequence of lupus, i have cataract in both my eyes, have POTS syndrome, Reynauds phenomenon, pulmonary hypertension and countless other side effects. I had learnt to live with all of them, trying to find a balance in my life adjusting it to fit all of them and yet do the things I have wanted to do.

But then someone sadistic sitting up there in the clouds thought I hadn't had enough and to throw the worst nightmare of every person at me - CANCER.

3 February 2011, I am sitting at the clinic waiting for my turn to see my Rheumatologist completely unaware of what was about to hit me. I went in to see her after a long wait and what happened next caught me offgaurd.  She said my blood results were back and there was something strange in the blood. She kept saying there were monoclonal protein in my blood and I got frustrated and asked her point blank to be honest and upfront with me and tell me what it was. She reluctantly said it was Cancerous in nature. The world suddenly came crumbling down and her words echoed in my ears. My favourite doctor finally came in to see me and the look on his face told me he was scared for me. A sudden fear gripped me when the doctors said I couldn't go home and had to get admitted straight away for further tests. Panic hit me and I made a stressful call to my brother who came rushing to the hospital.

After that it had been a long journey of blood tests, scans, bone marrow biopsy while I sat in the hospital patiently waiting to know the verdict. The Haemotology registrar came to see me and confirmed I have Smouldering Myeloma. My family was devastated and tried to comfort me in their own little way. I went home and the series of hospital visits began. The doctors suggested an Allogeneic Transplant i.e. stem cells from another person. My siblings got tested as potential donors and  the search began. I remember the day when the Haemotologist told me that none of of siblings were a match and I couldn't believe my ears - 3 siblings and none were a match. It was a cruel joke and sadly it was on me.

The doctors came to a general consensus that I should be transferred to another hospital where there is a team of stem cell transplant specialists. I met the new doctor and he seemed pretty comfortable that I had MGUS - basically a stage that is non-malignant and will not harm me. This was only 7 months ago.He said I easily had 2-3 years before the disease would show any signs of change. In the meantime, I got a  call from the other hospital that there had been mistake and that one of my sisters may be a match. Now by this stage, I also found out that she was pregnant and couldn't donate stem cells for a while after her delivery. My Doctor reassured me that it wont come to that stage as i wont need a transplant for a while.

A month ago i found out that the time has come for treatment. My 2-3 year plans have been snatched away from me. I will be going in for treatment at the start of 2013 - chemotherapy, Stem Cell Transplant and potential Graft-versus-Host disease - Recovery period up to 1 year.

What have I to live for? There's so much uncertainty surrounding my life that I'm starting to question if its even worth trying. No health, nearly 30 and have no stability in my career, love?, I may never have children, my family treats me as a sick child and cannot identify with me as an individual with an identity. Im starting to question if its even worth it. Is there any point in putting myself through all this. What is it for?

I feel like I'm finally coming to terms with reality and what the future holds for me and to be honest  it looks quite bleak. 

Questions

It’s been a while since I have expressed myself in words; however, I felt this innate desire to break my silence and ask questions that have been haunting me for months. Life’s been a very interesting journey so far….

I have grown as a person and have made some hard choices. I have this constant battle within me whether I believe that god has been fair to me or not. It seems he hasn't left me much choice but to battle my way through. I am constantly fighting to live a life I feel I deserve and then there are times when I can’t even find a reason for my existence.

At times, I feel one lifetime isn't enough to achieve all I want to do and yet at times it feels like a never-ending journey. I feel like I’m racing against time and there never seem to be enough hours in the day.

And then there is someone I love to the point that it almost hurts.How can a few months with someone feel like an eternity?   Can you love someone so much that you fear to even think of a future in case it’s a dream and might come to end?

And then there is a part of me that is never happy with the person I am despite achieving so much and coming this far ahead in life. Why do I torment myself with these doubts – I wonder.

Life is a mystery that I am on a quest to unravel it and hope to find content and peace that I believe we all deserve.

A never ending road

Life seems short and yet a long road we need to cover. This is just an expression of my emotions devoid of any judgments.

Two years ago, a quest had begun, a will to succeed, a desire to follow it right through to the end. And today here I stand, a point of no return, I must go on for what it takes, for too much is invested in what it took for me to be here after all!

Now I look back at all those rocky roads, the long journeys, the time away from home!It makes me wonder - Was it really worth it? Its a question I ask myself with every breath I take. I stand here today, struggling again, back at a junction where I'd begun the game. Life takes full circles, its brought me back to where I'd left.

And yet, I think of the lessons I've learnt. The painful truths, the deceitful lies. I've seen it all, I've lived it all. I think I'm a wiser person today. A little cynical and yet alot worldly. I guess, in life you wouldn't know until you took a chance. No decision is right or wrong. Its what you make of ourselves that matters the most.

A New World!!


It had been exactly 14 days since she last saw them. Life has taken a very strange turn and she really doesn’t know what to expect from each day.

As she was standing at the Delhi Airport in the immigration queue the reality finally dawned on her that she was actually on her own, all alone. It was strange when she saw her father standing on the other side of the gate and not beside her in the queue. She was continuously looking at him and there was a silent communication between them as if he too felt the same. He'd let her go and find her own space in this alien world. Once she was through the immigration procedure she saw him for the last time. She was looked him as he walked away till her vision blurred with her own tears and she could no longer see him. She couldn’t remember for how long she stood there staring into empty space where he had stood just minutes ago.

Finally, what seemed like an eternity but actually just a few minutes later, she turned around and with a heavy heart moved on. She asked someone where she needed to proceed for security check. Once she was through with all the formalities, she sat just next to the departure gate ready to dash out any minute. She always had a strange fear that everyone would board the aircraft except her. Funny how human beings get psyched out by little things in life , and yet can handle great problems easily. After about half an hour, the arrival of the aircraft was announced and she headed towards to the aircraft. She got the window seat that she had requested for before and was waiting for her co-passenger to arrive thinking how or what he/she would be like. Her hopes of an intellegent and stimulating conversation with the person were shattered when she saw the man who came and sat beside her. He was a jatt from Punjab and was very weird. The entire journey to Kuala Lumpur was a very quiet one. She landed at Kuala Lumpur at seven in the morning. She was desperate to speak to her family but alas her cell phone wasn't working. She had never felt so scared in her entire life as she did on that day. She was asking every second person at the airport as to which terminal her connecting flight was supposed to take off from for Melbourne.But all her effortswere in vain.No one there spoke English!!! Sounds strange for an international airport!! Finally about an hour later after asking a million people she reached the terminal and then there was a wait for another three hours.She slumped on a chair.She was exhausted and nervous.The other Indian students who were also flying to Melbourne with her were weary of getting into a conversation with anyone. She finally boarded the aircraft at 10am and again got a window seat.Till date she curses herself for requesting for it. She had so much trouble everytime she had to get out to go to the washroom!

Finally at 8pm the flight landed at Melbourne airport. After about two and a half hours of immigration and custom procedures she eventually got clearance. For a second she thought the person from the university had not come to pick her up.Terrible thoughts started racing through her mind.And then she saw him...After getting some currency exchanged she called her brother. She knew everyone was worried sick back home. It was for the first time that she hadn't spoken to them for 24 hours at a stretch.
She finally arrived at the hostel at 11pm. And the first sight of her brother was such a relief that can’t even be described. He got some tea for her and then prepared food for her. She hadn't eaten for an entire day out of nervousness and her fear of falling ill.
She met with all of her brother’s friends and she instantly liked them all.

When she called home, she realized how much she’d missed them all in just one day.

She slept till late the next morning. She wasn't allowed to cook for the first three days by her brother and his friends as it was a custom when a guest arrived.She Her sleep pattern had been drastically affected and she couldn't sleep for days together.. Jetlag had finally taken its toll on her.

Her first official sight of Melbourne was when she went to the city. The beauty of the place took her breath away.It seemed that the place was untouched by mankind.In one’s life it should be made mandatory to visit this heaven on earth.

Her first visit to the university was with her brother and his friends. It was widespread.There is so much to see on-campus. She actually saw kangaroos there. The university has it's own wildlife sanctury!! Now that is something we can't even imagine back home!!Life’s been tipsy-curvy for her. But she has no qualms about it. She is accepting life as it comes with open arms….
Its just the beginning……………….