Friday the 31st of Jul – Welcome Out

Mara will be discharged from the hospital today at 3pm. Experience is an excellent teacher and I’ve learned that everything can change from one moment to the next. For better or for worse. So until (and even when) I actually pick up my sister from the hospital, I’ll keep in mind that change is constant. Good or bad. Ah…Don’t you just love my pearls of wisdom? It doesn’t matter, of course we’ll still be in the waiting room with a huge imaginary Welcome Out banner and invisible balloons! Mar’s not out of the woods yet. But she reached a clearing and now with a machete, she’ll be chopping her way through the forest. Will you listen to me? Enough with the analogies! The point is Mara is very excited and the anxiety felt over the last few days is slowly dissipating. She’ll have to go to the hospital on a daily basis for the next month at least. For now, she concentrates on sleeping and eating. She already started on a liquid diet. Mom is our CEO (Culinary Executive Officer) and prepares fresh soups every day.

Speaking of food, the basil my parents planted in the huge pot, on the balcony/open hallway, in front of our apartment is the number one cause of theft among our neighbours. Imagine its enticing fragrance tickling and seducing their olfactory senses enough to incite them to commit such a crime. A crime of passion and who can blame them? Oh Basil, thy art a cruel temptress! What amuses us the most is not as much the act itself but the way in which our perpetrators go about it. You may think we have nothing better to do than spy on our neighbours while they ravage our basil. As true as this may be, it is entirely beside the point. Anyway, let me give you our top two favourite ways to steal these leaves of pure green gold (I don’t know, can you smoke them?). Our Tunisian neighbour nonchalantly walks by and conveniently stops right in front of our balcony to admire the panoramic view. By now, I’m sure you understand that our ears are very finely tuned to the sound of basil being plucked and so, barely audible, we hear the unmistakable “tchik-tchik” of leaves being ripped. After a few moments, perhaps tired of the view, he walks away. But my all time favourite is without a doubt the Napolitan older lady. Around mid day (it doesn’t take a Sherlock to figure this one out) she walks at a slower pace, and just about at the height of the basil, without stopping, she ever so lightly bends her knees, and again the distinct“tchik tchik” as she walks away. Then literally 2 seconds later, here she comes again, same strategy, same light bending of the knees and again “tchik tchik”. When she disappears, we, the witnesses, are in stitches. As entertaining as these scenes are, why not just ask? The plant only costs 1 Euro at the local supermarket, we’d generously give them as many as they want. So why not just ask?

Tuesday the 28th of Jul – Mars Attack

After months of holding back, greatly aided by some serious sleep deprivation, Mara finally broke down. Yep. Last Sunday was the memorable day; I no longer need to visit Niagara Falls. I had my own private viewing in an Italian Hospital room. I’m delighted she cried her eyes out. It was about time she opened the lid on all her emotions. It’s healthy. It relieves. It’ll make her pee less and her eyes all the more sparkling. Although my last comment wasn’t well received. It’s a little too early for humor. I take the hint, shut up, hug her and let her sob. There’s nothing like a good crying session. Once you open those gates, everything just comes flooding in. Then, when the legitimate weeping matters are out of the way, the tears usually get tinged with some self pity where even the tiniest offense becomes a capital one worthy of wailing (don't let Mar catch me saying this): “And those stupid nurses always leave the light on at night and they're so indifferent and I can’t sleep and I have to pee every 2 minutes, and on and on…” I make light of this situation but in the end, it’s all just too much. Mar’s at the end of her rope. It’s now beyond physical and has entered the realm of her mind. The girl doesn’t know what hit her. I can tell by the way she keeps saying: “I don’t know what hit me, Paul. I can’t stop crying, feeling depressed. I know I have no reason but I do”. I suspect her doctors are sensible enough to recognize that she desperately needs a break. That’s probably partly the reason why they decided to give her the day off from the hospital today. That and the fact that her neutrophils are at 1600! Yeahhhh!

Any shrink would have a field day analyzing the myriad of emotions washing over Mara. Just like Snow White, she has 7 emotional little dwarves hovering around, hard at work: “Hi Ho, Hi Ho…” By now, you may astutely have remarked on the recurring cartoon theme. Welcome to my Fantasy world. Never a dull moment.

Anyway, back to Mar and the construction site that is her psyche. For a long time Anger laid the foundation in her head. Then Sadness painted the walls of her soul. The twins Panic and Paranoia hammered a little deeper into her mind. Fear and Depression built a little brick wall and finally Relief came sweeping through. Only there doesn’t seem to be much teamwork among the dwarves who come and go at their leisure without any order. So what does Snow White do? She whips their little hineys and recruits an 8th little Dwarf called Optimism to finish off the work. Et voila…Villa Mara is ready!

I sleep over every night now. I thought I’d spend some time describing what my sexy layered pyjamas look like (Delilah and her veils would be envious). I start off with matching dark blue trousers and shirt. The shirt has a side pocket and its usefulness very questionable because all items brought in must be sterilized and placed in a separate plastic bag anyway. Naturally all garments are disposable and only available in X or XXL. I cover the whole with a light green overcoat with matching green bonnet for over my hair. I pull over my feet some kind of green Christmas stocking that go just below my knees. And over those, another pair of dark green covers for my feet. I finish off my outfit with rubber gloves (for the kinky ones among you) and of course never forget the mouth cap. And that, ladies and gentlemen, is how I slip into something more comfortable for my sleep overs. Oh. And every time I go to the bathroom, which is at the end of the hall, I’m expected to change…After one week in my very own Swedish sauna, one of the nurses finally pointed out that the green overcoat wasn’t necessary when sleeping over. How very considerate! After one whole week! Welcome to the land of too little information.

Anyway, at least in the mornings, I provide my sister with a little entertainment. I’m totally dishevelled (how surprising) and beneath the bonnet I sport a tremendous Afro. Mar says I look like the green Martian from Tim Burton’s Mars Attack. Also, you can tell by the shifted position of my mouth cap on what side I slept. Next time I’ll take a picture.

My only consolation is that everyone is expected to wear this outfit. Including the doctors. And I confess to possibly having a little crush on one of them. I only see his eyes behind spectacles and a few curls peeking out from under the hideous green bonnet. He may not be attractive. I don't know. But, Boy oh Boy, his voice sure is handsome…Sigh…Next time I hear his deep voice, I’ll say something clever in the most sensual muffled voice I can possibly master from behind my mouth cap…

Fri the 24th of Jul – The Soldiers have arrived

Mara texted Dad: “I am now running on your immune system”. Some activity was identified in her blood and her neutrophiles are increasing each day. Apparently this is irrefutable evidence that Dad’s stem cells have found a home base and are multiplying. On Tuesday there were 40 per mm3. Yesterday there were 160. Today 320. A healthy person has 5000 per mm3. Mara is relieved that Dad’s soldiers have finally arrived and the troop is now patrolling her organs to counter any terrorist movement. I am a little more cautious. I know the Gods can be capricious (courtesy of Greek mythology). I do not wish to tempt their fickleness with my euphoria. As I write this, I already hear Richard’s reprimand: “Paula, embrace every moment of optimism that is given to you. Keep faith. Worry is one acquired family trait you can very well do without!” He’s right, of course, and I must let go of the painful disapointments faced in the past. This is a new beginning and we rejoice in it!!!

Even though Mar's spirit stays very strong, her body persists in rebelling. Her organs take turns in expressing their displeasure at all the poison they’ve been subjected to. Her hair is falling out again. For the last week, I stay overnight. The first few days in a chair and then I was upgraded to a bed. Quel Luxury. Every morning, Mara thanks me for being around. She says she’s lucky that I’m her sister. Every morning I respond with how thankful I am. All that I ever gave to Mara, I always received tenfold from her. I am the lucky one. Always have been.

Mon the 20th of Jul – Beep, Beep

I am Wile E. Coyote from Road Runner. Short of strapping myself to a cannon and blasting in, my “brilliant” plans to infiltrate the hospital ward are consistently thwarted. I tried charming. I tried yelling. I tried sneaking in (imagine me tip-toeing). Yet each time the door mercilessly slams into my flattened face. I’m sure I almost hear a: “Beep Beep” from the nurse as the dust settles behind the shut door.

I recently found that the obstacle course doesn’t even begin at the door. It starts in the waiting room. You see, if it isn’t the nurse slamming the door, it’s the mother of another patient who conveniently ignores the line, slithering in as soon as there’s an opening, before anyone else even has the time to blink. It’s a freaking war zone out here and my adversaries are fast and ruthless. As soon as we hear the lock turning, we all throw ourselves at the door. I think I even developed a sixth sense where I can hear the footsteps of the nurse before she even reaches the door. Sadly, I’m not the only one to have formed a super power. Some even smell her coming.

And so after the 3rd time of being outwitted by another relative, I decide to practice Sun Tzu’s Art of War: “Keep your friends close, and your enemies closer”. My plan is ingenious. Fail proof. I walk into the waiting room with the brightest smile. Establishing good eye contact his key. I indulge in idle chit chat with every person in the room all the while securing my position in line. “Oh. You’re ahead of me? Great. That means I’m next” I say out loud for all to hear. I continue conversing always keeping a firm eye on that door. “Brilliant. My plan is coming together.” I smugly tell myself. A woman comes in after the rest and stands in front of the door. Instinctively, we all close in on her. As the self appointed leader of the pack, to all and no-one in particular, I call out the order in which this is going down. I’m extremely surprised when my statement is met with very blank looks. I expected to have formed alliances but they all seem to think I’m some anal foreign chick…Could this be? Anyway, the lady, on the defense, casually says “don’t worry, we’ll all get in”. Great. Then you won’t mind waiting your turn. While we bicker, the door opens, and momentarily distracted, guess who seizes the opportunity…The Libyan Gentleman!!!!! Unbelievable. I complain to the nurse. She shrugs and dares to justify his behavior: “He’s from Libya. He doesn’t know any better”. Her statement is so politically incorrect on so many levels I don’t even know where to begin. And so I am outwitted yet again…by my Libyan neighbor no less. Is he over me already? How oddly disappointing...

Oh well. Another day, another strategy. Tomorrow I’ll play the ignorant foreigner. Success guaranteed. Beep Beep.

Sat the 18th of Jul - Like sands through the hourglass…

So are the days of our lives.

What ever happened to little Chiara? The toddler who displayed such a keen interested in my laptop? Or to young Venezuelan Pedro? The teenager who seemed more eager to update his facebook status than to chat with us. And to Gianfranco? My neighbor who had some kind of seizure a couple of months back?

And to so many others. Rosa’s daughter. Rita and Rocco’s son. Vincenzo’s daugther. Ukrainian Marta. Cristina’s Dad. They all have their stories.

We all share the hardship of watching our loved ones endure months of incertitude. We find solace in that we are not alone. Inevitably our lives are entwined; we are comforted and strengthened by each other. We enquire about the health of our loved ones just as naturally as if we were discussing the weather. Sooner or later we are all pulled down the same path. Quickly we become Veterans sharing our experiences and encouraging those who have yet to follow.

Young Pedro is ahead of Mar. He had the transplant 4 or 5 weeks ago. He just got out of his prison cell looking very pale, very thin, very beat up but very alive. He walks around with a head and mouth cap. His Mom Jenny, who hasn’t left his bedside since the transplant, is finally smiling. Pedro’s Dad always carried the Venezuelan sun in his eyes and never seemed to doubt his son would recover. It’s been rough but he’s out! They give me so much hope and courage. Every symptom Mara suffers from, young Pedro had. “Nausea? Don’t worry, “mi amor” (my love), it’s normal. Nose bleed? Been there. It’ll pass. Diarrhea? Done that. All three at once? Sure. Got the green, red and brown T-shirt!” Throw in some yellow for the sensitive bladder that makes Mar go to the bathroom every hour of the day. Chemotherapy may be devastating but, hey, think of how colorful it gets.

Little toddler Chiara had her transplant in February. Due to the genetic nature of her illness, neither one of her parents could be her donor. Apparently a perfect match was found in an Australian person through the International databank. The little girl is doing very well. She was discharged from the hospital and now comes in every 2 weeks for a check up. When I see her, she looks very alert and as happy as any 3 year old could be. She no longer wears a mouth cap. Her hair is starting to grow and she has beautiful light brown curls. This time, it’s my phone that mesmerizes her and she confiscates it. It isn’t until her Mom intervenes - “Chiara, what did I tell you about other people’s phones? You can’t take them” - that it is returned to me. I predict a brilliant career in technology for this little girl if her infatuation with electronic devices continues.

My neighbor Gianfranco just got out this week. I didn’t recognize him at first because he lost so much weight. He also wears a head and mouth cap. The day he was taken to the hospital by ambulance, some cells had entered his brain. Don’t ask me what that means. Suffice to say, it wasn’t good. He was due to start the transplant process (radio, chemo and then transplant) but that development delayed it until now. It took him back one step where he had to first undergo chemo to clear the bad cells in his brain before moving on to the actual transplant. As he put it, this leukemia was a gift from treatment undergone 5 years ago against a different cancer. This man went through 7 rounds of treatment. He lost one testicle, an abscess was removed from his buttocks and he suffers from countless other side effects. One might think that these details are too freely shared and might make one blush. But we find ourselves in unique circumstances where such matters are more easily disclosed. This man’s will to live is exceptional. Giving up is just not an option. In spite of everything, Gianfranco’s life goes on. He is married and has 3 children. 2 came after the cancer. His apartment is always full of friends and family and through our thin walls, we hear laughter. Yesterday his wife, Annalisa told me the leukemic blasts are back. There is very little hope for him yet he won’t give up. After barely one week of freedom, he’ll need to be re-admitted for emergency chemo, yet again. This time experimental, in the hope it’ll clear the leukemia before moving on to the transplant. The end isn’t yet in sight for Gianfranco. And I wonder: is that good or bad?

Mon the 13th of Jul – A very Special Day

The 13th of July is a very special Day. It marks 2 significant events. A Birth and a Rebirth. It welcomes into this world little Micah Sebastian de Haas, the baby boy of my dearest friend Cynthia. And on this day, Mara receives her very first batch of her father’s stem cells. A very special Day indeed.

Last Friday Dad started with his two daily injections to stimulate the production of stem cells in his blood. The level of discomfort for donors can range from dizziness to headaches, stomach aches, backaches, mood swings and in some severe cases to ruptured spleens. The doctor looks at me and says: “make sure your father rests as much as possible”. Mom and I watch over him like hawks although so far, it’s not necessary. He’s doing such a terrific job! Mara texted him in the morning: “Can’t wait for your batch of stem cells”. Dad’s response: “next batch is already in production!” According to the doctors, his harvest is plentiful. He’s ripe for the plucking! In the mornings, Dad must sit still for 3 hours with one fat needle in each arm while his stem cells are collected through blood dialysis. Mara receives them intravenously in the evenings. By Tuesday night we’ll know if and how much more she needs.

I regularly ask Dad how he feels. With each passing day, his answers become more original. I selected my top 5 favorites:
1. “I feel knocked out like a Looney tune crashing into a wall and little colorful birds fly in circles over my head”
2. “I have so many holes in me that when I drink, I’m afraid water will pour out of me like a sift”
3. Dad: “Do you know the joke: How do porcupines make love?”
Paula: “Very carefully?”
Dad: “Exactly. That’s how I feel with everything I do”
4. Dad: “My lower back is pounding. As if someone were playing drums on my butt.”
Paula: “Oh Dad, you have a drumming ass?”
5. The nurse asks:"How do you feel?"
Dad: "Like I've been smoking up"
Nurse:"Lucky you. Some people have to pay for that feeling"

Meanwhile, on Sunday, Mar was high as a kite. She was finally given a sedative. She was in so much discomfort - her entire body aching, her muscles cramped, her throat and stomach burning, her gums irritated, her vision blurred, her ears sore, her nausea back – that she gave in. She resisted the nurses’ enticing offers to administer pain killers for the last 2 days because she didn’t want to trick her body into a false sense of wellbeing only to feel the pain twice as acutely once the drug wore off. While I respect her reasoning, I can’t help thinking how different my own would’ve been. I’d have demanded to be drugged with a wake up call in 1 month time.

A couple of hours earlier, Mara was seething with anger. Might it have been the fifth “Paul, I’m so angry!” that tipped me off? I think she’s now running on her last reserves and her pain threshold is low. After the umpteenth visit to the bathroom, her fragile frame heavily leans against the drip. Her hands turn into fists and she says she wants to rip the catheter out of her chest, she wants to throw things. The phone in the room looks dangerously inviting. She wants to scream. All I can do is listen and hold her and when she finally crawls into bed, I gently rub her back, her arms and her legs.

Within 10 minutes, the drug kicks in. Her pain wasn’t severe enough to get morphine but whatever was administered definitely contained some endorphin releasing substance Almost instantly, I see a miraculous shift in my sister. From a contorted with pain Mara, all of a sudden, she turns into a very relaxed version of herself. There’s a dreamy look on her face, her big blue eyes are glazy, distant and she’s smiling. The pain is gone. She knows it’s still there but she doesn’t feel it anymore. “Paul, I feel wonderful. Tell me more about our trip to Bali.” Another 10 minutes later and she's completely knocked out.

Mar is going through a very rough patch but the finish line is in sight. The final stretch is the toughest one. I know my sister. She'll be kicking and screaming all the way to the end of this marathon and she will triumph. We’re all rooting for her and cheering her on for the last bit of rocky road ahead.

Sat the 11th of Jul – Amaranta of Little Red

Having watched one Disney Fairytale too many, I decided to put my obsession to good use. This tale is dedicated to my sister Mara and to Richard who, like me, believes it will come true.

As a disclaimer, this story is loosely based on real life events. Some characters are fictional and their names modified to respect their privacy. Also some events may be figments of my imagination or yet to happen….But they will happen because it is so Written.

On a final note, to increase the credibility of this fairytale, please imagine the characters bursting into cheesy songs and add, at your discretion, the appropriate background melodies of love, danger, fear and happiness at the relevant times.

ONCE upon a time, in a Kingdom far far away, lived a young Princess by the name of Amaranta. Not only was Amaranta fair, she was also blessed with a very kind heart, great intelligence and a sharp wit. She was dearly beloved by her family and the entire Kingdom of Little Red.

One cold winter day, the wicked Sorceress Lukemia, jealous of Amaranta’s spirit, cast an evil spell on her. She vowed that on Amaranta’s 34th Birthday, she would be cursed with a deadly illness. It would mysteriously come from deep within and spread like fire through the rest of her being. Upon hearing of this dreadful curse, Amaranta, whose most precious gift (although she did not yet realize this) was the gift of life, stubbornly refused to accept the fate laid before her and swore to find a way to break this spell. And so, accompanied by her loving parents and the loyal tiny Fairy Tinkerpawl, she set upon traveling to the land of her Father’s ancestors in search of the Great Wizard Martellius. Although he could not reverse the Sorceress’ spell, for her power was great and feared through out the Kingdom, he could alter Amaranta’s fate.

“Indeed”, said he, “On Amaranta’s 34th birthday, she will be stricken by a cruel sickness and fall into a restless and weakening slumber. But, she will not die and on the eve of her 35th Birthday, she will awaken from her deep sleep through the magnificent strength that lies within her. Her path will be strewn with adversity and danger but it will be so.”

And so it came to be….The Sorceress held Amaranta captive in the highest, darkest tower, guarded by indifferent Trolls. Amaranta remained brave and soon found company in Drippy, the octopus, and Tuby, the elephant. With the help of her new friends, Drippy stretched his far reaching tentacles out of the window down to Tinkerpawl who climbed up and snuck into the tower. In spite of her weakened state, Amaranta still sang, danced and laughed with Tinkerpawl, Drippy and Tuby. The indifferent trolls, who came to find out about this intrusion, were so charmed by Mara's good nature that even their hearts warmed to her.

Time slowly went by and one day Lukemia was called away to an important gathering with her other evil siblings to plot against Humanity. The Wizard knew the time was right to strike against the Sorceress. And so he advised Amaranta’s Father, King Rock to gather his most seasoned and trusted soldiers. That night, they attacked the castle defeating the demonic creatures the Sorceress had enlisted from the fiery depths of hell.

But the evil enchantress soon discovered the deceit and summoned her fiercest servants to destroy Amaranta. First her fire spewing Dragon Radius was ordered to burn her with his scorching flames. But Amaranta, armed with the Shield of Faith, braved the beast and protected herself against its burning rays. Furious, the Sorceress then sent for her cruelest servant yet, the insidious Serpent Kemos. Amaranta, this time, faced her adversary with the Whip of Strength and though the snake stung her, she survived its poisonous bite. But she felt its venom had weakened her and she feared what was yet to come…

Tinkerpawl, sensing Amaranta's distress, called upon all their friends in the entire Kingdom and with their help, they created a magical force that flowed through Amaranta thus restoring her strength.

Amaranta’s imprisonment in the tower gave her time to reflect over her predicament. She searched deep into her soul and realized that in order to live she must let go of the fear of not living. She must know, with complete faith and certainty that her love for life was so great and her will to live so powerful that the Sorceress no longer mattered and ceased to exist. The key lie not in facing her but rather in facing herself and embracing the beauty of life with total abandonment. The moment Amaranta came to this realization, the Sorceress’ hold over the Princess dissolved thus breaking the spell. The curse was finally lifted and was no more…

The fate of the Sorceress is uncertain. Some say her wrath was so immense at this humiliation, her failure so unbearable, that she auto-imploded, disintegrating into millions of dust particles. Others claim that she was banished from the Kingdom, never to be seen again, by the Wizard Martellius and his army of Elves.

As for the Princess, she fell madly in love with one of the handsome Elves and returned to the land of her Mother’s roots, not Flatland but the other more exotic South Eastern Land of Spirituality. She vowed to do good, continuing her quest for the meaning of life and spreading the valuable lessons she had learned. The fairy Tinkerpawl, followed her, opening her own little fairy dust shop by the beach, tanning all day and sipping tiny pina coladas with tiny little paper umbrella straws.

Amaranta, her Parents and Tinkerpawl all lived happily ever after.

The End.

Thu the 9th of Jul – Excellent Woman

I think my Libyan neighbor is flirting with me. It started a couple of weeks ago when Mara was not yet in the hospital and we were both sitting outside. After weeks of exchanging friendly nods and polite “Buon Giornos” in broken Italian, he approached us. We soon found that he spoke better English and we struck a conversation. His son is in the hospital, has the same illness as Mar and he already donated his stem cells. After the standard health enquiries, he asked if either one of us was married. Upon discovering my non-marital status, he warmly suggested we exchange email addresses so that we may stay in touch or as he put it: “To wish you Happy New Year and Merry Christmas”. I distinctly remember him directing his suggestion solely to me, not to Mar. That’s when the first alarm bell went off. During dinner, I jokingly told Dad he might expect a marriage proposal from an older Libyan gentleman. At my age, and with my father’s traditional disposition, I suspect he may even be tempted to accept and give me away for free! While this made us laugh, that same evening, Dad insisted in accompanying us to our room, not 2 seconds away from his own apartment. I’ve been escorted by one of my parents ever since.

After this episode, I decide my “relationship” with the older gentleman needs a break and I downgrade it from friendly conversation back to courteous nodding. I hope he doesn’t think I’m playing hard to get. This evening though, we speak again. After a civil “How’s your son? How’s your sister?” he says: “you are excellent woman”. I don’t know whether to blush, be flattered or burst out laughing…In any case, I am speechless and I walk away smiling….Is he coming on to me or am I missing a very important Libyan cultural attempt at friendship? I don’t know…But, not only am I chaperoned to my room every night, now my mother insists I do not open the door to strangers. How I missed living with my parents…

Anyway, enough about my “romantic” encounters. Yesterday Mar finished her Chemo treatment! She’s now officially in the dip period or her “downtime” as we renamed it. This means her immune system is flat and she is extra susceptible to infections. It’s been a rough 5 days and while the road ahead is still rocky, she continues to endure with her usual strength. She actually dares to think that she complains too much. This, naturally, is total bullshit (pardon my French). I couldn’t be prouder of my sister, her will power and determination. She is truly “excellent woman”!

She’s faced with an unpleasant decision. Tomorrow, the doctors want her “trump” re-inserted. For the recap, please go to episode of the 6th of May about Fine Dining. They make a compelling case and explain that it’s healthier for her body to be fed through the nose straight to the stomach. It would allow her digestive track to function normally. The alternative of intravenous feeding would cause it to remain inactive resulting in a prolonged recovery period during which her “engine” would need more time to restart. Mara has all night to “digest” this information and tomorrow when I visit her, I’ll find out what her decision is.

Sun the 5th of Jul – Con-Cat

The giant Feline tea cozy isn’t pregnant at all. The little Con-Artist or Con-Cat has been tricking us all this time. And now it’s too late. She’s won my Mother’s affection, not that this was such a great challenge to begin with. She sits in front of our door and when it’s closed, she knocks. Alright. She scratches but knocking just sounds so much more polite. Although Management strictly prohibits the inhabitants to feed wild animals on the property, this law doesn’t deter Mom. She clandestinely feeds the Con-Cat who now accompanies her on her evening walks. Dad isn’t very convincing in his attempts to discourage her. Unfortunately his attention is elsewhere. He suffers from tremendous back ache. Every other move sends thousands of electric bolts running through his body. I’d like to believe it’s from all the positive vibes our friends are sending but the truth is of a more practical nature. His bed is the great offender and causes his back to act up. When I ask how he feels, he says: “Paulache (a nickname only he gives), as long as I walk like Lord of the Dance (from River Dance), it doesn’t hurt too much”. He means that as long as he only moves his feet and keeps the rest of his body stiff as a rod, the pain is bearable.

Ever since he became Mar’s “Royal Martini” or Donor for us normal folk, Dad’s been keeping to a very strict and healthy diet. He’s lost very much weight in the last weeks and I can’t remember him ever being this slim. His back condition really worries us though. In particular since one of the side effects of the transplant may be painful joints. If already now he winces at every little move, I worry about how he'll cope during the procedure. Mom and I urge him to rest and avoid physical activity but to a restless soul as my fathers’, such a request may possibly be even more unbearable to handle than a strained back.

Sat the 4th of July – Later that day

The 4th of July also marks the opening of the first official Sales day in Italy. A little out of respect for the long standing institution of Consumerism, and a lot to satisfy our own need for serious Retail Therapy, Mom and I “dutifully” do our rounds of the Perugini shops. Judging from the amount spent and the items purchased, this form of therapy definitely has a desired effect. In fact, to guarantee full success, I expect many more sessions will be required in a very near future.

Later in the day, I visit Mar in the hospital. She had her 1 ½ hour radiotherapy session this morning and is now on to chemo. It seems I am destined to struggle with the nurses to get into the ward. Since my two hour traumatic waiting experience a couple of months ago, I take no risks. I buzz the bell and stand in front of the door until a nurse either opens or I announce myself through the intercom. In my assertiveness, I may have become a tad overly “buzz happy” and a volatile nurse starts scolding me. I briefly justify myself and refuse to enter into a discussion with her. I look at her blankly and indulge in a very blaze tone: “certo, certo” (sure, sure). The equivalent of a “whatever” or “talk to the hand”. Dissatisfied, she continues her grumbling to another more accommodating relative.

Inevitably, Mar’s therapy wasn’t as pleasant as ours. Far from it. The last 10 to 15 minutes were hard. She wasn’t allowed to move and her body started to cramp up. Immediately after the session, she was sick. I ask how she feels now and she can only describe the feeling as weird. Not nauseous but not normal either and she’s exhausted. When she asks about my day, I diligently describe each clothing item purchased. With Mar in the hospital, I find myself more consciously aware of my experiences. At least I try to be. It is deliberate with the intent of recounting them as accurately and animatedly as possible. I want to share every colorful detail. I want to lend my sister my eyes and my ears so that she may feel less isolated. Of course, if really my vision and hearing were at her disposal, I daresay they would serve her differently. This is confirmed when - after I finish with the beautiful green silk strapless top - she asks: “That’s great Paul. What’s happening in Iran?” And there you have it! I should’ve known…After all, I remember a time when Mara started her conversation with “What’s your take on the Israeli-Palestinian conflict?” I’ll have to brush up on my current affairs.

Saturday the 4th of July – Radio Day

After a juicy home made cheeseburger, in bermuda shorts, a pink tank top and flip flops, as if heading to the beach, Mar returns to the hospital. On Friday evening, her adventure continues on the same floor but in a different ward. The team leader, Antonella, lists another bunch of house rules. If at all possible, they are even stricter here then in the previous ward. Visitors must now completely trade in their clothes for hospital gear instead. Since this is the very first day, I am let off the hook with “only” a blue cloth over my own and a green one over my hair and shoes. I accompany Mar to her room door and once the nurses check all her vitals, I am allowed in.

Mar’s extremely anxious about Saturday. We keep our conversation light and from time to time I sneak in, not so very subtly, a word of encouragement about TBI Day. In fact, over the last couple of days, I’ve been pep talking her ears off. Always to distract her, I tell her about my next blog entry and my intended opening line: “While millions of Americans celebrate their independence on the 4th of Jul, Mar…” the sentence is immediately finished for me: “Mar gets nuked”. We chuckle. As dark as her humor is on the eve of TBI Day, you may have guessed its morbid meaning. She’s getting Total Body Irradiation also known as Radiotherapy. She is very apprehensive about lying still, naked on her side in a fetal position for over one hour while her body gets “irradiated”. It almost sounds posh, Spa-esk. “Oh yes darling. After my FBM (Full Body Massage), I’m going for some TBI (Total Body Irradiation). It's fabulous." She knows the drill because she already did the simulation in a glass container while an unsympathetic lady doctor snapped instructions at her. Every fiber of her being protests against this treatment. In her opinion, its aim is as useful as a mosquito being destroyed with a bazooka. While pretending to whimper, she really, really, really doesn’t want to do this. All I can do is agree and acknowledge how much this all sucks. It’s ok for her to wallow and it’s ok for her to hate every moment. “Mar, by this time tomorrow it’ll be TBIO(Over) and I’ll TTYL (Talk To You Later)!

After the treatment, she’ll take a “decontaminating” shower. Yet another word that doesn’t sound very promising to Mara. “Big Sistor, think of it as a refreshing, cleansing, detox shower”. Perhaps a little more pleasing to the ear but unconvincing to Mar: “No Paul. It’s definitely decontaminating”. The very same afternoon, she’ll continue with more chemo for 5 days, followed by the stem cell transplant. She will be kept in the hospital for the next 30 days. The typical complications that may arise are nausea, high fever and pulmonary infection. Depending on their severity, family members may be asked to remain with the patient 24/7. In the unlikely event, I already reserved the night shifts.

As for the stem cell transplant, it’s not a very invasive operation since she will receive the cells intravenously. A few days before, my father will be injected with some kind of liquid that will help “harvest” the stem cells in his blood. It will then be drawn from his arms and given to Mar. We should know by the beginning of next month if the transplant was a success.

Let me try one more time: while America celebrates its Freedom on the 4th of Jul, may this Day symbolize the first in Mara’s Freedom from Leukemia. A very special Day indeed.