Catia Bitching Cancer

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.

Sandro, Kristin, Jordan and Cassidy came with me today to my radiation appointment. It was the kids’ first day of summer vacation and Kristin and I thought that we would give them a treat, ha ha! We all rode the train to LA and when we were at Kaiser, the technicians were super nice and they brought the kids in the radiation room, showed them the machine, the laser beams, the computers, the cameras. The kids were amazed and very curious. They loved it that they could see me from a TV screen while I was being zapped in the other room. After that, we took the metro again and went to Hollywood to do “the tourist thing” on Hollywood Blvd. Really, we only stopped at the newish mall, where the Kodak Theater is and the kids had a blast going through the interactive water fountain. They were drenched! Then they played for what seemed like forever jumping after images projected on a piece of floor. We had lunch at CPK, under a warm California sun and in the shadow of the Hollywood sign. After that, we found a bowling alley and we bowled for quite a while. As a warning: never willingly take me as a bowling partner. I ended up last, after all the kids, with half the score as the littlest one. My ball kept misteriously leaping into the gutter. I swear there must have been an invisible hand pushing it to the left or right! We had a fantastic day. Sandro fell asleep in my arms on the way back. Life is good.

Scrivo questo sul treno che mi riporta a Long Beach dopo la mia prima sessione di radioterapia. Stamattina, dopo aver lasciato Sandro all’amico che lo porta a scuola due/tre volte alla settimana, sono tornata a casa per un po’, ho fatto colazione, ho incominciato a ripulire e poi sono partita. Alle 9 e 20 salivo sul treno per Los Angeles e tiravo fuori il computer. Prendere il treno (che per metà è in superficie, per l’altra metà è una metropolitana) nella California del Sud è abbastanza insolito. La gente non usa mezzi pubblici se ne può fare a meno. Ma per me è di una tale comodità che ne vale assolutamente la pena. Stamattina ho preso la coincidenza sbagliata a Los Angeles, ma me ne sono accorta abbastanza in fretta, sono scesa e ho preso il treno giusto. In cinque-dieci minuti ero all’ospedale, quasi esattamente all’ora giusta, e in altri quindici minuti o meno ero fuori. Una volta che hanno fatto il check-in mi hanno fatto andare in una sala d’aspetto e in pochi minuti mi hanno chiamato per il trattamento. Sono andata diritta a spogliarmi in una cabina, ho messo la vestaglia da ospedale e sono entrata nella sala delle radiazioni. Mi hanno fatto sdraiare su una piattaforma, mi hanno allineato con la macchina (una roba enorme con uno schermo che ti gira intorno mentre si posiziona per spararti i raggi X), mi hanno detto di rimanere immobile e, dopo aver fatto un paio di radiografie per essere sicuri che fossi in posizione perfetta, mi hanno zappata. Non ho sentito niente, tranne il rumore della sirena di sicurezza che suona ogni volta che in una stanza si fanno raggi (penso che sia per avvertire chiunque si trovi nei paraggi che in quel momento in quella stanza si stanno emettendo radiazioni). Insomma, una procedura indolore. Dopo il trattamento, mi sono messa la crema all’aloe che mi hanno consigliato per minimizzare le scottature, e mi sono avviata alla stazione della metropolitana. Super-semplice. Per sei settimane questa sarà la mia routine. Sicuramente mi romperò le balle a un certo punto, ma almeno il mercoledì e il venerdì ho due amiche che verranno con me. Altre vogliono venire anche altri giorni. In ogni caso penso di portare sempre il computer per non restare a mani vuote. E poi ho sempre i miei libri, no?

I am writing this entry on the train, on my way back from my first radiation treatment. I’m loving it! I take the Blue Line from Long Beach, change in LA to the Red Line (yes, there is a subway in LA), which leaves me a block and a half from the hospital where I get radiation. This morning I was a little late, as I stepped on the wrong train initially, but then I was in and out of the hospital in less than 10-15 minutes. And the train ride gives me the chance to catch up with email, blog etc. For six entire weeks!

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.

Ok, I’ve been having this pain in my right underarm at night that spreads to the arm and ends in a tingling/numbing sensation in my right hand…and then I have tingling in my left hand, occasionally in my feet too. I’ve been trying to get hold of my onco but we’ve been mostly playing phone tag. Francesca thinks it could be an inflammation of the veins caused by chemo, but says I might need some tests. Right now I am enjoying not seeing doctors, or taking medicines, though, so I refuse to get worried.

I saw Dr. McDorky the other day. He pumped me up with some more saline solution. Now my fake breast contains 440 cc of salt water (I read a cancer survivor’s 8-year old called it ‘tears’) and it’s disproportionately and visibly bigger than the breast remaining. It’s not the first time. It needs to be like that, says Dr. McDorky, in order to allow for the skin to tighten during radiation, and with post-radiation deflation hopefully get soft again. Who knows. McDorky says that the final results are all to be seen: different bodies respond differently to treatments.

Next appointment: radiation onco who insists that I call her by her first name. I’m thinking they are going to give me the famous defining breast tatoos…three or so blue dots tattoed in strategic spots on your chest, that allow the radiation oncos to aim the radiation beams to the same locations every time. Then radiation will start end of May/beginning of June. Five days a week for six weeks.

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