Thu 21st of May - Oma

I leave my “Oma” (Grandmother) behind. She’s a very feisty 87 year old. Quite a character. During my parent’s travels, she was given “custody” of their pets, 3 parrots and 2 cats. These animals are accustomed to human company and leaving them in my sister and my care was a disastrous experience. We were hardly ever home and our feline guests expressed their discontent by leaving numerous “complaints” in most unexpected places such as, for example, our shoes. Oma, like her daughter, is an animal lover and absolutely dotes on them. But as she grows older, it becomes more of a burden for her. In fact, she even struggles with taking care of herself. Of course she will never admit to this. My parents’ visits to the Netherlands over the last years have been more frequent and of longer duration. They then run her household and lovingly spoil all its residents.

Now that Mara’s in Italy, we can’t leave Oma alone and I suggest we either arrange for home care which is government funded or just extra help. Oma is vehemently opposed to the idea. Every time I even hint at it she violently rejects it. Today she shouts at me: “I won’t have a bunch of foreigners in my house.” Apparently with home care, a different person comes by every week and typically isn’t Dutch (By the way, Oma has Indonesian blood and is dark skinned herself…). Then it’s: “I can’t be bothered to explain a thousand times how to do things right. I just won’t do it”. Next she heard from friends: “they’re arrogant and won’t do as they’re told. What’s the point?” And so on... I try reassuring her. We’ll find one suitable person she feels comfortable with. We’ll write everything down so she doesn’t need to explain. I’ll be around in the beginning to make sure they’re not arrogant. She gets more and more wound up and in a final attempt to win this battle, her ultimate threat looms over me like a sword of Damocles: “You take the animals then. That’s the real reason I need help. Without them I can perfectly take care of myself”. She knows I want to be by my sister’s side and I know she’s bluffing. She practically hangs up on me. Since I plan to visit her in the evening, I brace myself for the hard discussion that will follow.

In anticipation of the dreaded moment, I seek the counseling of my trusted advisor, Richard. He is slowly becoming the Rossini Sister’s therapist. In his most professional and soothing tone, he analyses the situation and urges me to find the underlying motives for Oma’s resistance: “I see Paula…Yes Paula…Find the real reason behind the reasons.” I’m lucky he doesn’t charge me.

Perhaps Oma perceives this “defeat” as an admission to old age…Perhaps she is afraid of being left alone. She may think it starts with home care and ends with care in a Home. While I understand her fear, at the moment, we have little other options.

In the evening, after a very heated conversation, she finally concedes to maybe allowing someone to help in a future. She reserves the right to veto anyone she disapproves of. Now, the “simple” task of finding that very special someone rests on my tense shoulders…Happy days…

Fri the 22nd of May – Economy of words

Mara is very sick. Her fever fluctuates between 38 and 40 degrees. She is burning up yet shivers under 3 blankets. She is very tired and hardly speaks. Her sleep is interrupted by severe coughing fits that make her spit. These last few days, she doesn’t even make it to the bathroom. I sit with her and when she gets an attack, she weekly cries out in Italian for a “sciotola”. At first I have no idea what she means, and I hand her tissue papers, a glass, the thermometer, etc... She shakes her head and whispers “sciotola, sciotola” while pointing to a plastic bowl on her side table. This cough is persistent and the doctors are running tests to determine what bacteria are causing the infection. Unfortunately, it has formed a wicked alliance with her nausea and so when she isn’t spitting out phlegm, she is vomiting and bleeding from her nose. Later, when she feels better, she jokes about how she could compete with a Chinaman in a very audiovisual spitting contest.

She’s down to 49 kilos. Luckily the trump has been replaced by intravenous feeding.

On a positive note, this chemo doesn’t make her hair fall out. It is growing unevenly, cropping up on top of her head. Mara compares it to a cockatoo’s crest. She says that when she gets mad, her crest bolts up.

Her mental exhaustion worries me the most. She really wants to get out of here. Since last November Mara has spent more than 3 months caged in a hospital room. Enough to drive anyone to desperation. With this recent infectious complication, her hospital stay may be extended. At Dad’s mere suggestion of the possibility, Mara masters the little strength she has to explode. In French... “Ha non! Je me casse! (I’m outta here)”. I picture her crest rising dangerously. Even though her threats are empty, she has all the right to be enraged. She must find an outlet for her frustration and this emotion helps her to cope with the situation. It is almost tempting to continue provoking her just to get her blood boiling. At least this way she knows she is alive and kicking!

Wed the 20th of May – No news good News?

Alas, our Leading Lady spends most of her days either sleeping or hanging over - what has surely now become - a diamond studded platinum toilet bowl. Her trump is back. When Professor Martelli urges her to exercise, our Heroin’s tired response is simply: “I’m not very inspired right now…” I don’t think he appreciates her humor.

I continue sending text messages, two to three times a day. Mar rarely responds but that’s ok, I don’t expect her to. Nor is she in the mood to talk. That’s ok too. She’s forgiven and I’ll demand what is rightfully mine, my older sister’s undivided attention, when she’s 100% healthy again!

The Doctors estimate that some time next week, Mar can be discharged from the hospital. She can recover at the Chianelli Residence for a while before the next round of chemo and radio. She is literally counting down the days (to leave the hospital, not to the next treatment). She worries that her leave may be delayed depending on her physical condition.

My parents prepare her “home” coming the way they know best...FOOD. Mom even brought her blender from the Netherlands to make the healthiest vegetable soups or veloutes as she calls them.

I booked my flight to spend a long weekend with my family. I can't wait!

Wed the 13th of May – Martini Royal

A text from Dad. Cryptic as usual. “RR like Martini: officially appointed blood supplier to royal house”. It takes me a couple of seconds to decipher before I shed some tears of relief. For the confused, like me, let me translate: Dad, Rocco Rossini, is now officially Mara’s donor for the stem cell transplant. It wasn’t easy but he passed the health checks. At one point, the poor man had his blood drawn six times in one day, before and after every meal. He walks around with so many needle marks in each arm that between him and Mara, some may draw the wrong conclusions. An assumption easily justified if they knew we live in Amsterdam!

This is great news. The last few weeks have been uncertain and this is one worry less. I am elated, I want to jump up and down in joy and celebrate…But experience has taught me otherwise. So I am carefully happy, cautiously optimistic. I don't want to tempt the gods into sprinkling any more “complications” on our delicate path.

My parents must be so relieved. On the day we were told the Leukemia returned, Mom cried and desperately wished she could spare her daughter this cruel fate. She would take over this hardship in a heartbeat, without hesitation. It must be unbearable for any parent to watch helplessly as their child suffers, unable to protect them.

And so for once in a very long time, this feeling can be helped. It sounds so dramatic but my father will give his blood to “save” his daughter. Or at least increase her chances. Straight out of a Hollywood movie….Starring Angelina Jolie as Domenica aka Mara and Sean Connery with an Italian accent as Rocco “The Rock”!

I miss my sister. I bombard her with text messages on a daily basis. She's very tired thus not very responsive. I worry about tiring her even more and so, in yet another sms, I ask if I’m driving her crazy with all my messages. If so I’ll back off. Her response is clear: “U never drive me crazy”. Even though she doesn't answer, I'll continue texting so that she knows she's in my heart.

Perugia Hospital Address

Dear Friends,

If you'd like to send Mara a card, this is the hospital address:

D. Rossini
C/o Osp. S.M. Della Misericordia
Reparto Ematologia / Degenza (Cam. 9) 06132
S. Sisto - Perugia - Italia

Sun the 10th of May – Return to Amsterdam

It’s yet another beautiful sunny day in Perugia. Every morning we are treated to a musical concert, performed by the talented Perugino birds. I am sad to leave. The cat who welcomed us on our first night at La Foresteria, comes to say good bye. I ask him to take good care of my father while I’m gone. On cue, he walks to Dad and rubs up against his trousers. I feel better knowing that my father will be looked after!

I need to get back to work and make some arrangements in the Netherlands. Mom hasn’t seen her daughter in over 3 weeks and is anxious to be with her. She’s been taking care of her elderly mother and wasn’t comfortable leaving her unattended. Now that I’m back, I can relieve her of her charge and book her on the earliest flight to Italy. Also, I’m happy she’ll be with Dad.

The journey, two trains, two buses and a plane ride, goes smoothly. I left Perugia at 9am and at 8pm I land at Schiphol. It’s been a long day ending on a warm welcome at the gate by Hege and Richard. At 9pm, I receive a text from Mar “Did you have a cheeseburger?”.

Before leaving to Italy, Mara bought a lottery ticket. Her reasoning makes perfect sense: “Paul, if there was a chance I got Leukemia, surely there is a chance I can win the lottery.” Gotta love her logic…Having checked the results, I must inform her that the odds of her getting this illness still outweigh those of hitting the jackpot.

Sat the 9th of May - 118

I am jolted out of sleep by a very loud and throaty groan around 7am this morning. It comes from the neighbor next door. The only interaction I had with him was when I asked him a couple of weeks ago to lower his voice while Mara rested. Even though the walls are thin, he was very understanding and immediately did as he was bid. Seconds later, I hear the panicked voices of a young woman and an older man, screaming and calling his name, Giancarlo. I jump up and run outside. At the same moment, the young woman also bursts out of the room. She sees me, and frightened, asks for help. I can not dial the emergency number 118 with my Dutch phone but we were given a direct number to the hospital in such cases. Only, Dad has it so I run to his room and persistently knock on his door. In one breath I explain and Dad ever so calmly dials the number once he finds it. The lady, in tears, begging us to hurry, says Giancarlo can not be roused. He vomited and is salivating and their attempts to wake him are useless. She eventually also manages to call 118 and runs downstairs to wait by the gate for the ambulance. Since he vomited, I worry he may be lying on his back and suffocating. I run back to the room to find the older gentleman, still trying to wake him by shouting his name. Giancarlo is in bed, on his back, unconscious. I try pushing him to his side but he’s a big man and I can only get his upper body to shift. The older man sees what I’m doing and grabs a yellow bucket. I remember fleetingly wondering of what importance a bucket could possibly be right now. After a minute, he understands and helps roll Giancarlo to his side. I never did this before and I desperately hope I’m doing the right thing. I do notice a thin line of bile trickling down the side of his mouth while we turn him. When the paramedics arrive, I return to my room. I still hear a lot of commotion, people rushing about, talking loudly, equipment moving and finally to my relief, through my window, I see a drowsy but conscious Giancarlo being brought to the hospital. Just to be sure, I walk back out to check on the young lady. The door to the room is still open and I call out “Signorina?” She appears, looking exhausted but calmer. She apologizes for having disturbed us…As if I would write a letter of complaint to Management!

I am now wide awake and it’s only around 7.15am. I take a long warm shower and after a while I give in to my grief and burst into tears. This is all just too much. I keep thinking how Giancarlo must have been not so long ago, a vital man in his forties with strong thick hair. This is all so unfair.

Other then reading, blogging, facebooking and hanging out with my sis, I picked up an old childhood hobby of mine. Friendship Bands! The repetitive motion of tying knots in strings is very soothing. So today while talking with Mar, I knot away! Since it’s been 17 years since my last band, I wonder if I still have the touch. I do. It’s like riding a bike. In 3 hours, I make my first bracelet which Mar now proudly uses as a bookmarker. You see, I miscalculated the length of the strings and it’s a little too short.

While we converse, a man walks in. Not only is he clad in the green hospital cloth, he is in actual fact (no pun intended) a Man of the Cloth. He is here to offer his spiritual services to the patients of this ward. Mara and I are initially weary of his intentions…Will he trick us into a quick conversion, Vegas style? While sizing him up, his first question does not bid well. He asks of what Faith Mara is. Straight to the point. She says she is a Spinozista…He looks at her puzzled, as do I, but he is not deterred. Although he is wearing a mouth piece, he is pleasant to talk to and we find out that he is a Brother of the Franciscan Order. I eagerly show off my recently acquired knowledge of Saint Francis as Patron Saint of the animals. Anyone who is kind to animals automatically receives Mar’s stamp of approval and she therefore takes to this Saint. The “Brother’s” name is Michele and he comes from the same country of our father, Puglia. He’s a friendly man and promises next time to bring a book for Mar to read. Anyone who brings her reading material also receives Mar’s stamp of approval.

Fri the 8th of May – New Arrival

Early this morning, Mara sneezed and her trump flew out! There is no way that thing is going back in. Only, the nurses don’t know this yet. As we speak, Mara is carefully crafting a “cunning” plan to secure a trump free existence. She calls me and tells me what happened. “Oh no Mar. I’m so sorry. I guess they’ll have to put it back in”. As always, when Mar’s passionate about anything, she naturally reverts to French: “Ah Non! Faut arreter le delire” (this madness must stop). I suppress a smile. Mara is practicing her next move with her most authoritative tone on me. Later that morning, she explains what happened to a male nurse. She insists that it is useless to put the tube back in. Her oesophagus (not from a Greek Tragedy) still suffers and it’s just too uncomfortable. The nurse says he will reinsert it this afternoon. Mara looks at him and says: “No, you will not reinsert it this afternoon….”A few moments later, Dad receives a text. She is rid of the tube. Her Jedi mind trick worked! The doctors, on their daily rounds, were informed and most probably decided to give in as long as Mara ate properly. Here’s to the little triumphs in life (as long as our headstrong Mara eats).

Mara has always been subversive when it comes to Facebook. It’s a matter of principle. An invasion of a person’s privacy. However, these days, looking into people’s lives through their pictures, offers a small escape from her present reality. Her views on the matter of FB may have softened. Just a little bit. She still refuses to create her own profile but will no longer feign indifference when I access mine. She has always been very discreet about her private life and so while in the beginning she had her reservations about The Blog, she is now curious and supportive of it. Because, says she, with yet another smart ass remark: “how else will I read about myself?”

At the end of my visit, I leave through that ONE door with that ONE key. There is an internal waiting/changing room that leads to it. As I open the door to this area, I witness the arrival of a new patient. Her personal belongings are in a plastic bag and she is wearing the hospital pajamas. She has shoulder length hair and seems Mar’s age. While she dries her hair in the bathroom, she talks to her family. They are all wearing that hideous green quarantine outfit. Before the nurse ushers me out, I catch a glimpse of a man I assume is her father. I know the look in his eyes all too well. The look of a terrified deer caught in the headlights. It’s the same look I had last year. I recognize this scene. The one in which the patient desperately wants to protect her family by acting very strong, pretending that all this is normal. As if she does it every day and isn’t really going to the Hospital but rather is preparing for a trip somewhere nice. Perhaps there is also an element of self preservation in which she denies her new Reality. Mara even said: “Don’t worry Paulita. I’ll be out of here in 4 weeks!” This was last November.

Thu the 7th of May – I say a little prayer for you

Every day I pray, a few times a day for Mar's full recovery. I don't think it matters who I pray to. Whether it's God, Jehovah, Allah, Buddha, Shiva, Mother Earth or the Universe. Ultimately, if done with faith and love, I believe prayers are heard.

Ariane, a childhood friend of Mar’s, living in Bali, promises to “recruit” many of her Hindu friends to pray for Mara. This brings me to a clear realization.

From all corners of the world, we are blessed with loving friends who send healing thoughts and prayers to us. It’s a beautiful notion. At the risk of sounding overly poetic or just down right corny, your positive energy flows through us and gives us the strength to face whatever comes our way.

So to all corners of the world, we cherish your loving prayers and your healing thoughts. Please continue keeping Mara in your minds and in your hearts. Please visualize a vibrant Mara in a very near future, completely healthy, utterly happy, full of life, definitely with longer hair, fulfilling whatever important mission she is meant to accomplish in this life.

The other day my father said he could not imagine that a voice such as Mara’s would cease to be heard. If you know Mara, you would agree. So when picturing her, hear her voice and her laughter too.

As a token of my masochistic appreciation, I will happily receive little electric shocks every time a positive vibe is sent our way! Maybe not Mara though. She may not appreciate being shocked on top of everything else.

Thu the 7th of May – Mara Foie Gras

And so it has passed. The big cloud over Mar’s head has lifted. Today she’s her usual witty, spirited, charming self.

When I arrive, the nurse who admits me immediately says Mara is feeling better. Mara. Not Domenica. I’m so proud. The cheeky me almost asks: “Who?”

Since she’s practically being force fed, Richard nicknames her “Mara Foie Gras”. She, in turn, refers to the tube dangling from her nose as her elephant trump. When not in use, it is tucked behind her ear. It is still unhandy and when she struggles to drink from a plastic cup, I ask about her strategy. Her smart ass response, while pretending to dip into the glass with the open end of the tube is: “I’ll just have to slurp it through my trump.” We seem particularly gifted in nicknaming hospital equipment. In Amsterdam her drip was affectionately called "octopussy".

Although she has no appetite, all she can think of his food. This obsession is a recurring symptom of the treatment which also surfaced during her hospital stay in the Netherlands. Her latest craving his spaghetti Bolognese. In Amsterdam, she longed for hamburgers. The whole day today, she tastily smacks her lips while making typical noises made when savoring an incredibly delicious dish or the prospect thereof: “Mmmmmmhhhhh….Yummmmyyyy….Spaghetti Bolognese…Hamburgers…Mmmhhhh….Sushi…Empanadas…Carne Mechada…Platanos Fritos…Gado Gado…Rendang…Pancakes…Pain au chocolat…Mmmmhhhhh….She doesn’t discriminate and all International Cuisines are randomly brought up in no particular order. She has one request for me. When I return to Amsterdam, I am expected to go to all these different restaurants and eat on her behalf.

As of yesterday, Mara is connected to the World Wide Web. She doesn’t really seem that interested and I suspect it serves more to feed my Bloggers Addiction. At this rate, I will soon have to sign up for BA (Blogger Anonymous) sessions.

Today is a good day. May there be many many more.

Wed the 6th of May – Fine Dining

This morning, Mar sends me a very chirpy text. She feels great and can’t wait to see us. This is followed by a smiley face. A couple of hours later another sms: “Bastards stuck a tube down my nose to my stomach in order to feed me…I’m not happy” A sad face ensues. Dad and I feel for her. I picture the scene before me. Mara kicking and screaming, resisting with unexpected force the 5 nurses holding her back. Of course, that wasn’t exactly how it went…When I go to see her, she is tensely staring out ahead with her big blue eyes. She hardly says a word. Her silence is deceiving and the lapidary look she casts leaves no doubt as to what she is feeling…ANGER. She is so very angry. The tube is extremely uncomfortable and she absolutely hates it. It’s hard to talk, to breathe, to move…I try distracting her with some stories but she remains impassive. Finally I shut up and content myself with holding her hand. She firmly holds on to it and after a while, losens her grip. She starts to relax again and soon we’re back on track.

My Grandfather, a very wise man, used to say: “It can never get any later than midnight”. He meant that just as each day must end at midnight, so must even the darkest of hours come to an end.

And so. This too shall pass (Yet another very wise, famous man whose name eludes me)

Tue the 05th of May – Open Sesame

Mar hasn’t eaten in 5 days. If by tomorrow the nausea hasn’t subsided then she will have to be fed through a tube inserted into her nose. The prospect far from excites her and so she fervently hopes she will feel better by then. On a positive note, after 6 days, the chemo ends today. Hurrrrraaaaaayyyyyy!!!!!!

Dad and I still struggle with visiting hours. Although official “opening times” are between 3 and 3.30pm, we are told there is more flexibility for family members. What they conveniently omit to mention is that this flexibility very much depends on the nurses on duty…And these seem to rotate every hour! Let me explain how it works. You come into the waiting room. You ring the doorbell. You wait/pray for someone to answer the intercom. You state your name. You wait/pray for someone to unlock the only door to the ward. There is only ONE key to open that ONE door. How I fantasize about getting hold of that key! It’s more exclusive then a Secret Society. Soon there will be a secret code or a handshake. If you’re lucky it won’t take more than 5 minutes. If you’re not, you may be looking at a good 2 hours. Today is not my lucky day. I come in and politely ring the doorbell. Nobody answers. I patiently wait thinking they must be very busy in there. After 30 minutes I ring again. No answer. Another 20 minutes go by. An old lady, the mother of a patient, walks in and rings. Within a few minutes a nurse opens the door to let her in. I take advantage of that moment and with my sweetest smile, I gently inform the nurse of my presence. She mumbles something and practically slams the door. My mood takes a turn for the worse. I am fuming. I want to shout and yell and gesture and throw things. I won’t though. I’m half Dutch. So I sit down again and wait. To vent my frustration, I sms my Dad a couple of times with status updates. In disbelief, he comes up and still finds me waiting. After another eternity, a nurse peers through the door and lets another relative in. Again, I walk up and again I am told to wait. At that moment my father explodes. Short of throwing things, he shouts and yells and gestures. He can. He’s Italian. Instantly, magically the door opens and I am admitted by an apologetic nurse. It’s sad that we must resort to such drama to get things moving. All I want is to hold my sister’s hand while she is sick and I just lost two precious hours waiting in the room next door. The irony.

What valuable lessons can I draw from this experience?
Lesson 1: My finger will be on that doorbell more times than a bee on honey
Lesson 2: I will be more Italian and practice shouting, yelling and gesturing. Friends, beware!
Lesson 3 (perhaps less realistic): Must make a copy of that key

In the room, Mar tries to sleep. Emphasis on “tries to” because between her bathroom visits and the nurses walking in and out, it’s very challenging. A whole delegation of nurses marches in. One to take her temperature, the other to take her blood pressure, the last to administer vitamin K. Her arms are the stars of this show and from her bed, a sleepy Mara ever so slowly, raises them both extended, palms upwards, as if to surrender. She does this so automatically and with such grace that it makes the nurses smile. Princess Mara. Why not. After all, she is a VIP in this joint!

I pride myself in being practical and organized at work. This may sound arrogant but sometimes I have low tolerance for those that aren’t. Especially not at work. Today I illustrate with an example. Nurse A walks in to inventorize the medical supplies in Mar’s cabinet. Even though Mara is sleeping, she turns on the very bright neon light. This rudely awakens Mara who squints at the light and tries to shield her eyes from it. A couple of minutes after her departure, Nurse B walks in. Guess what. She’s here to check on the supplies too. Again, lights on. I tell her Nurse A was here not a moment ago and I demonstratively stand up to switch off the light. 2 minutes later, Nurse A walks back in to restock the cabinet. Lights on again. Guess who walks in not 2 minutes later…You got it! It occurs to me: what if they’re also double dosing the chemo? Noooooo. It reminds me of a joke. Something about Italians and organization…Must banish that thought. They may be a little disorganized but so far they have been very competent and in our eyes that’s how they’ll stay.

Sun the 3rd of May – Blessing for Sale

The weekend is tough for Mar. She’s incapable of holding anything down and is just collecting more Wretchers Points. At this rate, she will soon be elevated to Gold Membership and get her own Golden Bowl. When I walk in, she wakes up, groggy, and hugs me really tight for at least 2-3 minutes. Just as I think she may have fallen asleep on my shoulder, she lets go…She’s so exhausted. It breaks my heart. On Saturday, Hege spent some time with her. The idea was for Richard to be with her on Sunday but Mar’s having such a bad day that she cancels. As one of my dear friends put it: She will get sicker before she gets better. SO BE IT. May all this, as rough as it is, serve to make her healthy again. Her strength and determination are unquestioned. Mar even says herself, in a slightly modified version of Rapper 50 Cent’s famous album: I'm gonna “Get well or die tryin’!” In between her severe bouts of nausea, my big sister manages to hold on to her sense of humor. I’m sorry the same can’t be said about her food.

On Sunday, Hege, Richard and I visit the Basicilica of St Francis of Assisi. For the interested and unknowing, St Francis is the Patron Saint of Animals. Back then, he was like a modern day Animal Whisperer. He came from a wealthy family and decided to give up his comfortable lifestyle to devote himself entirely to the poor. He lived very modestly and did many charitable acts. Through his good deeds, he had many followers and so he founded the Franciscan order for which he received the Pope's approval. He was a very kind man who did a lot of good for the poor and destitute. I hope this short summary is accurate and does him justice.

While both the Church and Basilica are very imposing in design, it strikes us that very little about either construction is humble. The interior is just as rich. I wonder if St Francis is rolling in his grave. Everything about this place screams of Status and Wealth. Does this not contradict the values he practiced and preached such as Humility and Charity…To be sure, we visit his Tomb in a downstairs chamber. For a small donation, you can take a candle which you can not light. With the hundreds of tourists walking around I understand this precaution. Back upstairs, again for another small donation you can light an electric candle. So I insert 50euro cents and to my dismay, nothing lights up…Mass is being held. I may not be a very religious person (to be clear I am a spiritual one and I do have faith. There is a difference) but it saddens me that in spite of all the boards and requests for silence, people are still talking, children are still yelling. This all seems like a business. A tourist attraction. In one corner, a priest is sitting in a glass booth. Just like at Disney, people are standing in line and for yet another small donation, the priest blesses you. You are even handed a receipt or is it a certificate? Everything is for sale so why not a Blessing?

Fri the 1st of May – Dream Catcher

It’s Labor day in Italy. Even though there’s a bus schedule, there are no busses, no taxis in sight. Hege, Richard and I cluelessly wander down the street not quite sure what to look for…Perhaps divine intervention…Hege takes charge and asks a security guard for assistance. He gives us a taxi number and while we wait for our taxi, a bus miraculously appears! We’re even more excited when the driver confirms he is going to town. So we hop on, I call to cancel the taxi, only to find that after 5 meters the bus halts and everyone steps out including the driver! It has reached its final destination and will probably only depart in 30 minutes.

What??

At that moment, a disgruntled taxi driver races towards us. It was too late to cancel anyway and we’re happy to see him. In all the confusion, an American tourist also lost his way on the bus, not realizing this was the end of the road. We offer him a ride and after a chaotic morning, we finally head to town.

And that’s how we met Joseph.

It’s very easy to connect with him. He’s a New Yorker of Sicilian origin. He’s traveling on his own and after a week in Rome, decided to take a day trip to Perugia. I take them to the sunny terrace with the view and we relax over cappuccinos and sandwiches. Many different subjects are broached. From serious to not so serious. Lady Gaga is blaring in the background and we find ourselves singing along to Po-po-po-po-poker face…It’s a very catchy tune even though she’s a little Cu-cu-cu-cu-cu. Slightly embarrassed, I tell them about how, at the bookstore, I peaked into Madonna’s brother’s biography of his sister. What an idiot…We touch upon the swine flew and the media hype around it. On to how some psychopathic anti-monarchist drove into the crowd in the Netherlands killing 6 and harming countless others. This somehow leads us to torture techniques and how easily men can be incited to cruelty...Back to technology and of course Facebook, always a winner. Of course we also talk about what brings us to Italy, our important journey here with all the twists and turns along the way. Joseph listens attentively, laughs at the humorous passages, shows empathy at the serious ones. He then takes a small object out of his bag and hands it to me. It’s a Dream Catcher. It was given to him by his mother before leaving and he wants me to give it to Mara for good luck. What an incredible act of kindness from a person who only a couple of hours ago was just a stranger to us. Moments such as these fully restore my faith in the Universe and maybe our paths crossing was serendipity.

Hospital visiting hours start at 3pm. They’re very strict and only one visitor is welcome…A day! I explain to the nurses that Richard and Hege came all the way from the Netherlands and they’re willing to make an exception. We take turns, first Hege, then Richard then me.

If it were at all possible, Mara would have a membership card to the Frequent Wretchers Club. Since last night, her visits to the bathroom are very regular and after relieving herself for the umpteenth time of any remnants of food, she walks back into the room and weekly jokes: “See Paulita, I’m hungover from Queensday too”. I tease: “Hermanita (little sister), if you had hair, I’d hold it back for you”. Her body’s reaction to this treatment is much more violent than to the one in Amsterdam. That one now seems like a walk in the park…

After a while, she feels better and we chat about our day. I tell her about Joseph and the dream catcher. She’s very moved and without any hesitation says he must be an angel. I don’t know if it’s the chemo talking or if Italian Catholicism is rubbing off a little too strong. No matter, Joseph, if you read this, know that the dream catcher is hanging over Mar’s bed and that you are now officially her “Angelo Giuseppe”!

She doses in and out of sleep and just as I am about to pick up my book, she has a moment of lucidity and yaps away about one thing or another. This goes on during the entire visit. Richard and Hege confirm she did the same with them and it makes us smile affectionately.

While she snoozes, I look around the room. It’s very sterile. Any attempt at personalizing it is either discouraged or forbidden. There is however a life size picture of Minnie Mouse on the door. Minnie is wearing a pretty little red dress, a matching bow and is flirtatiously batting her eyelashes at us. She brightens the room and Mara likes her. Next to Minnie, on the opposite wall, a crucifix is hanging staring at Mara. We stare back and I ask her with a hint of humour (or maybe not) how she feels about having Jesus up there. She replies: “Yeah…I don’t mind having him around either”.

Before I leave for the evening, Mar pretends to pout and sighs. She misses Herald… Before you get any ideas, Herald is a stuffed animal. A fluffy dog. He’s been her faithful companion through out her hospital stay in Amsterdam. She’s tucked Herald countless times under her neck for much needed support! He’s given her comfort through the lonely hospital nights yet sadly he is now denied access to her room in Italy…I pleaded with the nurses but the best they can do is put Herald in a plastic bag which would defeat the purpose. We haven’t given up yet. I’ll continue this fight tomorrow…

Thu the 30th of Apr – Good Bye Trees

Mar sends me an sms: “Professor Martelli wants to speak to both of us. Can you come ASAP?” Again, the fear takes over. I rush to the 4th floor of the hospital. A young lady doctor is waiting for me at the entrance of the department and escorts me to a little waiting room where Mar’s sipping on some tea. She looks so fragile. Her right eye is blood shot and the color vividly contrasts with her big blue eyes. Inserting the catheter was a painful experience. She describes the local anesthesia as the sting of a jelly fish. It felt as if the tube were poking her heart. To make matters worse, the treating doctor’s almost indifferent attitude while tugging at her skin only contributed to aggravating her even more. The feeling of helplessness makes her very very angry. At that moment, I wish with all my heart I could take all this away. But I can’t.

Professor Martelli walks in. He confirms what was said the day before. The Leukemia is back with a vengence. At this rate, even a transplant wouldn’t keep it at bay. The treatment plan and the timelines have changed. A different kind of chemo the first six days and after approximately 50 days, the transplant. It’s now almost 4pm and we’re given a couple of hours of freedom before Mar is expected back at the hospital to immediately start the treatment.

We go for a walk. She says good-bye to the trees, the wind, the bar and after one last cappuccino at 6pm we go back. Mar walks in with nothing but the clothes on her back. She’s handed hospital pajamas and asked to change. Her clothes will return with me. Everything is taken care of and anything else must be desinfected. This includes her mini ipod, her books, her mobile phone and even her sister! I am covered from head to toe in this green disposable garment. Not a great fashion statement but sterilization is taken very seriously. The moment Mar’s admitted, an entire team of nurses takes over and swiftly gets to work. She is no longer in control of her body and is asked to sign different papers allowing them to treat her. As her Private Assistant I feel strongly about protecting some of her basic rights. For example, even though all her friends and family call her Mara, her official name is Domenica. The medical staff has thus far addressed her as such and Mar has not corrected them even though I know this is important to her. I therefore fiercely demand they call her Mara everytime her name comes up. It’s a detail and I may be over-reacting, but I won’t let them take away her name!

After a long journey, around 9pm, Richard and Hege finally arrive. Mar’s in very capable hands and in good spirits after a very decent hospital dinner. A culinary treat compared to the carton tasting food she was fed in the Netherlands. I leave her to pick up our friends and when I see them, I welcome them amid sobs of happiness. It’s been a long couple of weeks and it feels like an eternity since I last saw them.

They’re staying in my room and as we walk to the Foresteria, the resident cat gives them a lavish welcome as he did with Dad, Mar and me on our first evening. Richard is convinced he must be the reincarnation of a patient, looking out for us all. I think he’s right.