Catia Bitching Cancer

I talked existential last night in my support group. We talked about death and dying and the afterlife. I have been pondering spiritual existential questions for a while, with bouts of desperation and the sense of ‘what use is it to even wake up in the morning’, with all the gloomy thoughts that come with it…you know how people say they have found faith when confronted with cancer? I think for me it’s starting to be the opposite: I feel I am losing what little faith I had. And it’s not because I believed in a god that caused human suffering, I’ve never believed in that. I believed in a god that suffers with us, rather. But being confronted with my own mortality and touching it so closely through my friendship with people who are fighting cancer has put me closer to the ground, I don’t know how else to express this. Yet, life every day is a miracle, incredible, complicated, intertwined, mutually dependent. And we stay in this universe, if in different form, after we lose consciousness as we know it, don’t we? We end up fertilizing the ground and remain part of the circle of life. Is it the fear of suffering and transition that gives us this desperation, rather than the fear of death (ever read “The Fear of Transformation”, a brief essay by Danaan Parry; or that poem, “Without” by Elana Klugman…try Google them)?

And through my friendships I do sometimes feel we are all connected: in a mysterious way we are part of the cosmic consciousness, linked by the love we feel for each other, through the discovery of our common fears, joys, sickness, achievements, failures….

So this is it: the panic that strikes you after all is said and done, slashing poisoning and burning…all done…now it’s time for learning how to live with fear and not let yourself live in fear. I got a nice start with thyroid hormones at >100 (so chemo or radiation shut down my thyroid…nice!) but most of all, with elevated liver test values. Couple that with CT finding of the three lesions in the liver, and finally CEA and CA 27-29 (tumor markers) higher than before chemo, one of them outside normal range. So dr. Faith had me take more tests and at that point I had been freaking out for quite a few days. It was then that I decided to join a real life cancer support group. I’m not letting them go. It turned out that it was likely nothing too worrisome, just that I have to stop drinking alcohol all together (yeah, that sucks!). But those days further opened my eyes at what my life is going to be like from now on: constant worry and constant wonder. Worry that the cancer may come back and with a vengeance, but wonder at the beauty of life, at the preciousness of every moment, at the marvel of a butterfly that lands on your hand and unexpectedly stays to let herself be admired. Sure, if I am lucky eventually I will go back to my usual, hurried and unobserving self. And sure, I look forward to that in a sense. I don’t want to go back to that dark place that I visited a few days ago. But there was something very beautiful in those moments too, this heightened attention to each breath I took, each smile on Sandro’s face, each drop of sweat from the heat of the day and each gust of wind that blew the sweat away…even each piece of laundry that went into the washing machine. I thought that I could choose to make all moments meaningful or make them meaningless. At the same time I was terrified of the darkness of death, of the prospect of my son’s suffering in losing his mommy. My support group therapist suggested I embrace fear and all the feelings I have without painting a scenario around them, learning to accept the feelings without imagining the worst. Now I do feel better and, sure, I go about everyday business in a semi-normal fashion. I know fear is going to be my companion for a while, I’ll wake up with her, have panic attacks, I will go over them, then have them visit me again. It will get better, if I am lucky. It only takes time….it takes time…as if time is what we have.

So, I am an aging ex-cankerous self, it turns out: my test results show a wreck of a woman, but hey, I feel good! I have osteoporosis of the spine (apparently dr. Faith thinks it’s unrelated to the chemo/radiation); diverticulosis of the colon; hemangiomas in the liver (benign tumors); a septate or arcuate uterus; and have been thrown in sudden, but very possibly unreversible menopause. Worse of all, I have gained at least 14 pounds since the start of radiation! Most of this stuff is apparently associated with aging… Dr. Faith was surprised a woman my age would have all this, a ‘young’ woman she said, ‘you are too young for this!’ I guess life aged me beyond belief. And me, I had dared to think I was invincible and eternal. But I have no fucking cancer left that they can tell (also known as No Evidence of Disease – aka NED – a dear word to us cancer victors/survivors/patients – best we can get!). Dr. Faith wants to keep the liver under scrutiny, just in case, but so far so good. But because of the menopause/chemopause and the osteoporosis, she also advised me against the clinical trial I had agreed to be on: not good for bone density, I would have to wait until and *if* I got my periods back to start medication, and I couldn’t be on medication for osteoporosis if I wanted to. So we went with the standard treatment, which is tamoxifen, a medication that blocks natural estrogen from getting to estrogen-feeding cancer receptors (for types of cancer, like mine, which feed on estrogen). I will also have to limit (not completely, but be careful about) soy (we have too much in our diets anyway) and grapefruit intake , because they contain (or stimulate production of?) estrogen. And I will have to start taking extra calcium supplements to see if my osteoporosis gets better. OK, sushi will be a treat, not a habit from now on… wait a second… wasn’t it before?

So now, according to my bc support list, I am transitioning from the WIMP award level for cancer victors (“Why I’m miserable and puking”), to the MITT level (“Made it through treatment!”), which will come soon enough, on Sept 25th, exactly one year after diagnosis. I made it!!! And my sisters and their children are here. And we’ve already laughed together, cried together, screamed together at our children, be horrified together at my scars and mutilations, but mostly enjoyed each other’s company, no string attached, just a lot of love. Can’t get better than this, I tell you. Yes, I am an aging wreck, but boy life is good!

I know I know, I’ve been slacking…but….today I write to very gladly report that….I’M DONE, FINITO, THROUGH!!! Radiation is over!!! The left part of my chest looks like a square hot iron sat on it for a while, it burns around the edges (the middle is still numb from surgery) but I’ m done, finito, through. I have a few docs appointments to keep, and a couple more tests, but even the major ones should be out of the way too (at least until the plastic reconstruction surgeries). I look forward to a while without tests and needles. And to my sisters’ visit. I can’t believe this is it! I know, post-treatment depression will kick in at some point, but today I’m going to enjoy the flavor of freedom!!!!!!!!

Ho finito!!!!! Ieri ho fatto l’ultima radiazione. La parte sinistra del petto sembra ci sia passato un ferro da stiro quadrato e molto caldo, brucia ai margini (il resto non ha nessuna sensibilita’) ma in poco tempo passera’ anche questo. Anche le procedure piu’ grosse sono finite, ho solo un paio di visite e cose minori, almeno per un po’ di tempo, fino a che non devo fare le operazioni al seno per la ricostruzione. Non voglio vedere dottori, macchinari e aghi per almeno un mese o due!!! Vabbe’, forse sara’ di meno, ma per ora mi godo questo gioviale primo giorno di liberta’.

14 to go after today’s treatment. Whenever you find me again complaining, will my friends please remind me of today, when I saw a young mother coming in with a girl who must have been no older than 5 or 6: thin, but not too sickly, sparse blonde hair, which had obviously just recently (re)grown to be just about 2 inches long, a big pink ribbon around her head, a bright summer floral voile shirt, a shy but big smile on her face and a not too prominent scar in the back of her head…they were looking for Diana “the therapist” who, when she came out, ran toward the little girl and hugged her tightly. The girl reciprocated her embrace and was so happy in her bright pink-ribboned head, and somewhat enjoyed the compliments everybody was giving her, but seemed not quite so sure what to make of them. Will my friends please remind me of her when I feel poor-me-depressed, will you remind me of her when I talk about what I haven’t accomplished in my life, will you remind me of her when I complain about pain or the tediousness and fatigue of the daily radiation therapy routine, will you remind me of her smile? Thank you in advance.

Oggi e’ cominciato il conto alla rovescia. Mi mancano 14 sessioni. La prossima volta che mi lamento, pero’ chiedo che i miei amici mi ricordino di oggi, quando ho visto una giovane madre entrare in ospedale seguita da una bimba di non piu’ di 5 o 6 anni, magrina, con capelli radi che ovviamente erano appena (ri)cresciuti a una lunghezza di 3 o 4 centimetri, un fiocco rosa sulla testa, una camicetta di voile a fiori, un sorriso grande e timido sul viso e una cicatrice non troppo vistosa sulla nuca…stavano cercando Diana, “la terapista” che, nell’uscire, e’ corsa incontro alla bambina e l’ha abbracciata forte. La bambina ha ricambiato l’abbraccio con contentezza. Sembrava felice in quel suo vistoso fiocco rosa, anche se pareva non fosse sicura di come prendere i complimenti che tutti le facevano. Mi ricordino per favore i miei amici di questo giorno quando mi sentiro’ depressa e patetica, quando mi lamentero’ della stanchezza e noia dei trattamenti quotidiani di radioterapia, quando parlero’ di cio’ che non sono riuscita a concludere nella mia vita, mi rammenterete del sorriso della bambina col fiocco rosa? Vi ringrazio in anticipo.

Pain in the underarm and numbness of extremities has subsided. Mood is improving. Radiation therapy will start beginning of June and they’ll zap me with the full dose, targeting both the skin and the chest wall. Will get scans, ‘rehearsal’, tatoos on June 1st then on to 25-30 daily treatments. Don’t look forward to having my skin charred, but at least it won’t be painful, since I’m all numb in that area. Now biggest challenge will be to learn to live with the constant fear of recurrence, without letting that fear ruin my life. I have great models (my online breast cancer support group) to learn by, but I also know I’ll have to do the journey myself. Cancer sucks!

E’ da molti giorni che mi sento in forma. Ho ancora, ma intermittente, dolore alle vene, con formicolii delle mani e a volte dei piedi, ma tutto sommato sto proprio bene. I primi di giugno incomincero’ la radioterapia. La radiologa ha deciso di darmi la dose piu’ forte, sia sulla pelle che sulla cassa toracica. Il primo di giugno andro’ a fare le prove e mi faranno dei tatuaggi per essere sicuri di puntare i raggi x sempre nella stessa direzione e dagli stessi punti. Non sono particolarmente contenta di dover fare 6 settimane di radiazioni, che mi daranno bruciature al seno (cioe’ al finto seno, visto che non c’e’ piu’ niente li’ sotto!) e forse renderanno necessari altri interventi chirurgici per trapiantare pelle piu’ elastica, ma ho chiesto parecchie opinioni e, per lo meno qui negli USA, tendono ad essere aggressivi e bombardarti di trattamenti quando sei “giovane” come me. Comunque penso che paragonata alla chemio, la radioterapia sara’ una passeggiata. E visto che non provo nessuna senzazione dove mi hanno operata anche se la radioterapia mi brucia non sentiro’ alcun dolore.

D’umore sto bene. Dopo l’ultima chemio e’ stato difficile riprendermi, e quando uno sta veramente male subentra la depressione, ma e’ passata. L’unica cosa che so non passera’ e’ la preoccupazione costante, la costante ansieta’ che il cancro ritorni e che dovro’ rifare la chemio…purtroppo dovro’ imparare a vivere con l’ansieta’ e non lasciare che mi rovini la vita.

One day I’ll wake up to realize it had only been just a bad dream.

Un giorno mi svegliero’ con la certezza che era stato solo un brutto sogno.

Jill drove me to the chemo room on Thursday: before getting into the halls of hell we had a nice lunch on Vermont at a small French bistro where I enjoyed chicken pate’ that delighted my palate. I had never had much chance to talk to Jill at length about our hopes and beliefs and faith and I was glad I had that chance, though I have to say that with two anti-anxiety Ativans in my system I wasn’t really my sassy self. Which might have been a relief for Jill, really. I have now learned a lot of the tricks of getting chemo to have a low impact on you: for example, the day before chemo I have to have my blood drawn to make sure that I have enough white blood cells to allow me to undergo chemo without developing neutropenia (a potentially fatal lack of white blood cells). Now, I have never been afraid of having needles stuck into my body. My mom was a nurse and she taught us all at a very early age to inject intramuscular medication to ourselves and others. I also have to inject myself with subcutaneous medication in my legs or belly for four days in the week following chemo to give a boost to the bone marrow production of white blood cells…but I am starting to get sick of needles now. For one thing, when the inject the chemo into my hand it hurts more: veins are thinner there and can take so much pressure from the medications going in, so they stay sore for quite a few weeks after chemo. So my trick is that the day previous to the chemo, when I get my blood count, I ask the nurse to draw blood from the hand. The following day then, the chemo nurse can’t go give me chemo on the poked hand, for risk that the toxic substance would flow out of the vein and cause a nasty burn (yes, that’s the danger).

I finally also got the trick for antinausea medications that make miracles, though I have developed anemia and my liver functions are not at their best. But doctor Faith seems to think I can stand just one more cycle, with only one extra injection boost for my blood cell count. I can’t wait for May 3rd to arrive. Ten days later we’ll celebrate Mother’s Day with a trip to central California wine country (near Santa Barbara), all of us and our friends the Powers camping and Bruce and Mark doing a half marathon. The following week in Long Beach we’ll celebrate life and love and participate to Gay Pride festivities, walking in the parade and staffing our St. Luke’s booth (an inclusive welcoming church of the Episcopal church of the US). We’ll celebrate mass at the ocean where many of our lesbian and gay couples will renew their vows of commitment, those who are married and those who are not yet married, in the process of deciding whether to make their union a marriage. So many things to look forward to now…and not to forget my big feat in November! And I finally found a long lost dear friend, whom I hadn’t heard from for years and now I am happy to be able to talk to again. I have many things to feel blessed today…until next time, when I might not feel that cheery….love to all

Sorry, English-speaking friends…after a long time of no writing I gotta write something in Italian for my Italian friends and family who can’t read English!

A richiesta un post in italiano, anche se ho gia’ barato usando un anglicismo! Si avvicina il giorno del quinto ciclo di chemio. Da una parte non vorrei che il giorno venisse mai. Dall’altra, questo sara’ il penultimo ciclo, il che vuol dire che la fine sara’ piu’ vicina, quindi non vedo l’ora che arrivi. Intendo ovviamente la fine della chemio, che se fa il lavoro suo ritarda la mia di fine :-). In questi giorni, a partire circa dal venerdi’ della settimana successiva alla chemio numero 4, sono stata particolarmente bene. L’unica cosa che mi ha infastidito sono state le piaghe in bocca (conseguenza normale della terapia), ma anche quelle sono quasi tutte andate via. A volte anche lo stare cosi bene mi fa paura: mi dico che se sto cosi bene forse la chemio non sta attaccando il mio corpo (quindi il cancro) abbastanza. Anche un’amica mia ha avuto la stessa reazione alla chemio anni fa quando l’ha fatta lei. Il problema e’ che ora quest’amica sta molto male, ha metastasi nello stomaco e nelle ossa, e’ debolissima a causa di una forte inesplicabile anemia e soffre molto. C’e’ parte di me che mi dice che forse capitera’ anche a me, anche se statisticamente e’ improbabile. Poi pero’ mi ricordo di come mi sento per almeno 8 giorni dopo un ciclo di chemio e mi dico che in effetti e’ dura: anche se adesso sto bene e questo mi fa dimenticare i tempi difficili, passo 8 giorni molto infelici dopo la terapia: nausea, rigurgito, stitichezza, mal di pancia per i lassativi, piaghe in bocca, mal di testa, nebbia mentale…quindi se sto male vuol dire che la chemio fa bene, no? Pero’ quando sto male non ci penso a questo: penso solo che non voglio essere in questa situazione, che non voglio avere il cancro, e che cazzo! E’ vero che adesso capisco molto di piu’ la sofferenza e le persone che la incontrano. E sto imparando (o meglio, sto lottando per imparare) ad accettare la prospettiva della morte come parte della vita (tanto moriamo tutti, no? Eppure abbiamo l’illusione dell’eterna vita terrena). Ma a dire la verita’ a volte vorrei ancora stare vivendo la vita illusoria che vivono le persone che non sono mai state male, giusto per non stare piu’ male.