Catia Bitching Cancer

Dearest friends: I am happy to announce that I have reached my personal bottom-line fundraising goal, thanks to you all! You see, in order to walk the Breast Cancer 3-Day each of us has to raise a minimum of $2,200, and as of my writing I have collected $2,900 dollars from all your donations and I am grateful to you all for this. Now, I want to make sure that all my team members are able to walk with me, especially Bruce, who has been so supportive throughout all this ordeal. I want him to walk with me: Sandro will be staying with friends during the three days, then he’s going to join us to walk the last few yards. We’ll cross the finish line together and together, as a family, we’ll celebrate our victory over cancer! So I am asking you, those who haven’t donated but intend to, those who have donated but know of other people who might want to donate to the cause, those who can make a further donation, to support Bruce directly: the money you give will go to the same worthwhile cause and will make it possible for Bruce to share my 3-Day blue tent in November. You can view Bruce’s 3-Day page at http://www.the3day.org/sandiego07/brucehardy. Thank you all again!

Cari amici: quelli di voi che capiscono l’inglese, sapranno da uno dei miei post precedenti che ho deciso di partecipare alla Breast Cancer 3-Day a San Diego in Novembre. In questo evento migliaia di donne e uomini camminano 20 miglia al giorno per tre giorni (in totale sono circa 100 chilometri) per raccogliere fondi a favore della Komen for the Cure, un’organizzazione dedicata alla ricerca sul cancro al seno e al sostenimento di iniziative di educazione, informazione e fornitura di cure mediche anche preventive del cancro al seno in comunita’ poco o mal servite negli Stati Uniti e in alcune altre parti del mondo. Ho avuto l’idea di partecipare perche’ ho visto che molte donne non ricevono le medicine necessarie per aumentare le loro chances di sopravvivenza e molte non ricevono cure preventive adeguate (come mammografie ed esami al seno) o perche’ non hanno assicurazione medica o perche’ vivono in aree del mondo cosiddette ‘sottosviluppate’. Io ho avuto la fortuna di ricevere le medicine migliori, che costano migliaia di dollari, ma non tutte sono cosi’ fortunate. La mia amica Sabita, per esempio, in Bangladesh, puo’ darsi che non possa ricevere un nuovo farmaco che riduce drasticamente la possibilita’ che il suo cancro ritorni. La sua famiglia vive nell’angoscia che un giorno, nonostante mesi e mesi di sofferenza a causa della chemioterapia, il cancro di Sabita riappaia, sapendo che se fosse vissuta in un altro paese le sue possibilita’ di sopravvivenza sarebbero state molto migliori. Cosi’ ho voluto far qualcosa per contribuire all’eliminazione di queste differenze dovute all’ineguaglianza ed inequita’ sociale ed economica e ho deciso di aiutare la Komen for the Cure e partecipare alla 3-Day. Bruce, naturalmente sempre pronto ad appoggiarmi, si e’ unito a me e, insieme ad altre 3 amiche abbiamo formato una squadra, che abbiamo chiamato Team Sabita. Insieme ci siamo impegnati a raccogliere almeno 2.200 dollari **ciascuno** a favore della Komen. Questo vuol dire che ognuno di noi condiziona la propria partecipazione alla 3-Day al raccoglimento di almeno questa somma. Devo dire che tra la mia testa pelata, il mio temperamento tutt’altro che timido, e il dono dell’amicizia di molte persone in tutto il mondo mi ha permesso di raggiungere e superare il mio personale obbiettivo molto rapidamente. Adesso mi sto dedicando ad aiutare gli altri membri della mia squadra a raggiungere il loro. In particolare voglio aiutare Bruce, perche’ per me e’ importante che anche lui cammini con me in Novembre, come sta “camminando” con me in questi giorni. Se anche Bruce e’ con me, un’amica si occupera’ di Sandro per 3 giorni e lo portera’ a San Diego l’ultimo giorno perche’ cammini gli ultimi metri e tagli il traguardo con noi. Voglio anche che questo rappresenti per la mia famiglia il raggiungimento del traguardo simbolico di esserci liberati del cancro che sta dominando la nostra vita quotidiana in questi giorni di chemioterapia e radioterapia.

Quindi vi scrivo per chiedervi di contribuire al nostro sforzo, di contribuire alla lotta contro il cancro al seno, di aiutare la Komen for the Cure a salvare vite, di donare 50 dollari (o quello che potete) alla Komen in nome di Bruce. Potete donare con carte di credito sul sito web che la Komen ha installato per Bruce a questo indirizzo: http://www.the3day.org/sandiego07/brucehardy. Se non vi fidate a usare la vostra carta di credito su internet (ma vi assicuro che il sito e’ protetto da piu’ che adeguati sistemi di sicurezza), potete anche contribuire mandando la vostra donazione alla mia famiglia che poi l’inviera’ a me tramite bonifico bancario. Se vivete negli Stati Uniti, la vostra donazione e’ deducibile dalle tasse. Non so se questo vale anche per l’Italia. Se avete ulteriori domande o volete piu’ informazioni sulla 3-Day, sulla Komen, o sul modo per contribuire alla nostra campagna, scrivetemi pure. Vi ringrazio di cuore in anticipo!

I had my fourth chemo today (2 more to go…I’m running downhill now!). I just came back home and I still feel OK. Dr. Faith changed my medications once again to help me with nausea and this time I have all that can possibly be taken, I should be ok. I accidentally took double dose of one medication because they gave me the generic refill of one that I was already taking, and I thought it was a new one to take in addition to the old ones…Fortunately I checked on the National Comprehensive Cancer Network guidelines and I haven’t surpassed the maximum amount advised per day so I should be ok. A slight nausea feeling is creeping up, especially in the form of increased sensitivity to odors, perfumes, non-food smells. I have to stay away from soaps, body lotion, body washes, shampoos (not that I know what shampoos are for these days), candles, deodorants, even my favorite perfume bugs me. BUT…although everybody had told me that I would be sensitive to food smells, those don’t bother me, quite the opposite! The first time I had chemo I even had better sense of smell and taste than before. Now my sense of taste is not as heightened, but appetite, aside of those first three-four days has not abated, mouth sores are kept at a minimum, constipation seems to be under control with laxatives (TMI, would you say?), my blood count is close to normal (I have to give myself shots to keep white blood cells at normal levels), I am keeping a good weight (maybe a couple of pounds heavier than before mastectomy, but that maybe increased muscle weight, from all the swimming and walking). Swimming is a God-send: the feeling and sound of water all around you is very soothing, I don’t feel any pain when I’m in it. Even when I cramp from laxatives, the moment my body hits the water it’s like I’m in my mother’s womb again. And then I have started training and walk on the beach, which is so healing in itself. I have signed up for the 3-Day Walk, a 60 mile walk over three days around San Diego, whose proceeds will go to Komen For The Cure and the National Philantropic Trust, two organizations that are devoted to fund research to end breast cancer and to provide advocacy, education, information and some level of breast care to underserved communities in the US and abroad. Bruce and two of our girlfriends are going to do this walk in November, and we have to raise 2,200 hundred dollars each as a condition of our participation, so I guess that this entry could be my call to you, my friends, for you to help us out and donate what you can to a good cause. You can find our team page at http://sabita.longbeachit.com. You can donate to any one of our team members and your donation is tax deductible to the extent allowed by law. If you prefer, you can join our team and walk with us. It will be a great experience and give a whole new deeper meaning to our friendship. Some of you have had the idea of coming down to San Diego the last day of the walk (Nov. 11th) bringing Sandro with them and let him walk the last yards to cross the finish line with us and take pictures, cheer and then hit the bars! You can do any or all of these things, but the important thing is that you help us in the fight against breast cancer. Thank you in advance!

Ho deciso: o vado in giro pelata con un bel po’ di protezione solare o con dei bellissimi foulard lunghi. Ma visto che perdevo capelli a vista d’occhio ho deciso di farmi rasare…guardate le foto del processo!

It all began with those hairs on the panties. Hair on underwear…? Shouldn’t be anywhere! Then I patted my head. And I said, “Oh, man!” And that’s how Wacky Friday began. I took a shower and I said “Bull!” more hair was falling and I caught a handful. I went for some laps and I asked “more?”: hair was floating down the swimming pool floor! In the hot tub relaxing, it almost felt like hair-waxing. Back in the shower, I began to shampoo. The foam was not white: it had a red-hairy-hue. I told the Y lady: ‘something is wrong, I’m losing my hair!’ Embarassed she laughed and said “thanks for the share”! Driving back home I called Lauren, the hairdresser. She said, “don’t you worry a bit, you might look beautiful with lesser.” Chemo textbooks say that starting week 3 you’ll no longer need hairspray. I went in my house, rubbed my head a bit longer. People say I’ll sure grow stronger. I’ll keep watching hair fall, trying hard not to bawl. Wacky Friday has just begun, soon enough it’ll be done. I’ll be bald and I’ll be bold and I will even get rid of that cancer of old!

This embarassing and pathetic imitation of Dr. Seuss’s Wacky Wednesday, to let you know that, by the textbook, I started losing my hair this morning, first day of week 3, pubic hair first. Can’t wait to see what I look like bald and hairless.

All I can say about nausea, vomiting, and chemo brain is this: 1) Had I had morning sickness when I was pregnant with Sandro I would’ve never contemplated having another child (and I think women who do are heroines); 2) one really comes to appreciate the small beautiful moments in life when one is not barfing or in a daze. The two malaises seem to be unrelated to each other; after hugging my toilet for a while, I felt a relieving brain alertness for about 30 seconds. On the other hand, the days following day 1 have been foggy, though I’ve had no more trips to the bucket. Even today, the best day so far, there have been times of tiredness and cloudiness. Some fastidious headaches. One of my cancer friends posted the pros of having chemobrain not long ago and appreciation of the moment was one of them. Here’s the complete list (you can read her blog at http://www.xanga.com/butshebites):

• You live completely in the here and now.
• You can watch the same episodes of your favorite shows over and over again because you don’t remember them, or more importantly, whodunit.
• You get a kick out of the same jokes you heard yesterday, and the day before, and the day before that.
• When people ask if you did something bad, you can truthfully say “I don’t remember.”
• Every moment is fresh and new, a clean slate.
• People stop asking you to remind them of anything.
• You are completely trustworthy with something that is supposed to be a secret. You can’t remember the secret.
• You don’t hold any grudges or resentments against people for past deeds. You can’t remember the deeds. You can’t even remember the people.
• No one asks you to multitask any more.
• You become super-organized, with lists to remember your lists. You always put things back where they belong because you know if you don’t, you’ll never find them again. You leave messages for yourself on your own answering machine.
• You stop telling people what happened more than two days ago because chances are, you’ve already told those people. Stories are limited to what happened today. Your life is becoming streamlined.
• The prospect of Alzheimer’s becomes less threatening.
• You cant remember what you are supposed to be worried about.

Aren’t my cancer friends great? Thanks Alycia!!! Finding the humorous side to absolutely everything and keeping thinking of other people’s needs and feelings too! The best part is that these bullet points are all true. Yesterday I stopped by Serena and she made me tea. I have always liked Twinings Earl Grey, but there was no taste like yesterday’s. It just made me feel in heaven. And the warmed up pizza I had for lunch? Y-U-M-M-I-E. Saltine crackers? Try our new and improved taste: post chemo-regurgitation, for all your taste buds’ needs!

All this to say that, waking up on day 6 with minimal nausea and an almost clear head feels great. I can do this, I can do this! All I have to do now is to talk to Dr. Faith and let her know that I need to change meds and maybe get an anti-anxiety drug for when I see the red-filled syringe (a whole new meaning to ‘seeing red’)… I can do this!

My first day of chemo, that is.

Turns out that, with a score of 14 on my Oncotype, even Francesca who had been so strongly opposed to chemo for me, thought that chemo is going to increase my chances of being disease-free in 10 years by too high a percentage to pass. So I reluctantly went ahead. I talked to Dr. Faith, who agreed to give me the type of chemo I asked for, rather than the one she originally suggested and yesterday I went to the chemo room with Bruce all uppity and in good spirit .

They injected me with two big syringes of a bright red substance (which is making me pee pink) and a smaller syringe of a clear substance. The other medicine was administered via IV drip, together with lots of saline solution and the anti-nausea medication.

We were done in about two hours, and though I felt a little tired and light headed, when I came back I took the car to go visit a friend. She wasn’t home, so I came back, made pizza for everybody then lay down on the couch. It wasn’t too long that I started burping gas and feeling slightly nauseous and not much longer that I had to run to the bathroom. I barely made it to the toilet, where I barfed up my entire Subway sandwich I had eaten while on IV and then all the water I drank and was injected with. When all was out, I felt much better, but although the pizza was tempting, I asked Bruce to prepare a soup for me….well, that didn’t stay down either. A couple of hours after I had sipped it, it came right out in a bucket that Bruce had prepared next to our bed. So much for the anti-nausea medications!

My cancer friends advised me to take the anti-nausea (I have three different ones, but one says “as needed”) before I feel I need it, so this morning that’s what I did: I popped all the pills down before getting out of bed. So far water and tea stay down, but I’ll wait another hour or so before trying to eat something (I am HUNGRY!!!). If that doesn’t work, I’ll try pot. But even that now is not that appealing, as I feel totally dehydrated. Funny how you hear and worry a lot about losing hair when you are on chemo. Right now I’d take hair loss anytime!

My oncologist’s name. That must mean something. I finally found her, after having seen two others and having asked the opinion of one oncologists’ board. Her name is Iman, which signifies faith in Arabic. And I need a little faith…correction… a lot. She actually listened to me, validated not only my feelings about cancer and treatment options, but also my research and my informed opinion. I went to see her last week: she was part of the multidisciplinary breast cancer board that meets every week in Hollywood at Kaiser. Turns out that other institutions have nothing to do with it, unlike what I wrote in my last post. That doesn’t make much of a difference in any case. So last week I met with Dr. Faith and with three radiation oncologists. Surgeons were also on the board, but there was nothing to be asked of them, as I already had surgery :-). Anyway, Dr. Faith immediately proposed I take a look at the TailorX trial, without me even mentioning it. Then both of us waffled back and forth between chemo or TailorX. Should I just get chemo, though we don’t really know it’s going to help me, or should I participate in the trial, which would at least give me the advantage of knowing through OncotypeDX whether chemo is likely to give me a better prognosis, even though if my score falls between a certain range I will be randomized for treatment? Dr. Faith questioned and thought out loud with me the pros and cons of each option. At the end she suggested I look at participation to a trial as helping other women, since the results will be used to improve treatment for breast cancer patients in the future. Given what Francesca (and other doctors) suggested to begin with, I see this as a win-win situation: I get a tailored treatment for the type of cancer I had, am followed closely because part of a trial, and I can feel I am doing something good for others too. That is, if I get into this trial. After signing all paperwork and doing extra blood tests, the medical trials coordinator at Kaiser sent my tumor block to the lab and all my information to the consortium that does the trial. Now I am waiting for them to get back to her (and me) and let me know if they accept me into the trial and, if so, what my OncotypeDX results are (thus what my treatment will be). Needless to say, I canceled all appointments with other oncologists as well as the chemo appointment for today. So today I spent the day with Alessandro instead of being poked in my hand and injected a funny-colored substance! I have an appointment with Dr. Faith for next week, on January 11th, day in which I will either start chemo or hormonal therapy.

As for radiation oncologists, they ordered a second opinion pathology report (I had previously asked that to some other doctor – or was it a nurse? – and had been advised against it for no reason at all in my opinion) , but said that given a clean margin of less than 1mm. their practice (as well as national guidelines) recommended radiations. I thought that the report said that the clean margin was 1mm. wide, but I had read it incorrectly: “within 1mm.” means “less than 1mm.” not “equal to 1mm.” Anyway, looks like I can’t escape radiation, but I am still looking into it, as a new study has come out that seems to suggest that radiation after mastectomy does not improve survival chances. One of the radiation oncologists I talked to left a message on my answering machine today, wanting to talk to me. I’ll see what she has to say tomorrow. The second pathology report, by the way, basically confirmed what the first said. So I think she’s going to recommend radiation. I will make the decision once I talk to Dr. Faith. Only bad thing about my new doctors, whom I like, is that they are in East Hollywood, at least an hour away from home (given usually bad traffic conditions). But hey, this might just mean that 26.3 miles are required for this leap of Faith!

I saw him today for my two-week checkup. I dressed all nicely: tight Guess jeans, tight aqua cashmere sweater, stiletto boots, day makeup. Of course, I was chest-lopsided, but Bruce said I pay too much attention to the breasts. He thought I was sexy and, had it not been Dr. McDorky I was seeing, he might have thought jelous thoughts. And of course, my thoughts for Dr. McDorky do not involve passionate kisses or sexual breast-fondling. But I do love him. Because, after all, he is human. He is such a sweetheart, in his own dorky way. So he was pleasantly surprised that my scar is healing so fast and he’s happy with my healing progress in general. I asked him whether the surgeon’s decision to not re-excise to obtain wider margins had anything to do with aesthetic reasons (in other words, whether he influenced the decision, based on possible aesthetic consequences). He reassured me he had nothing to do with it: his opinion is that first I have to take care of the cancer, take out as much skin and tissue as it is necessary, then he’s going to work with what is left to give me the best aesthetic results, given the circumstances. He told me not to let aesthetic consideration influence my decision either (not that I needed telling, but it was nice to hear that from a plastic surgeon). Of course, being Dr. McDorky, he explained all the possible procedures to get more skin and tissue to the side of the mastectomy, should further sugery be needed. But I won’t go there. He also told me that, should I need radiation, he won’t have to remove the implant, as it is all made of plastic parts. He’ll try to avoid further cosmetic surgery as much as possible. Another nice thing to hear from a surgeon!
Anyway, after we had talked for a while, he said I was ready to be pumped up. So he got out a big syringe, a small needle and went to get some saline solution. I am happy to say that I was able to take in 90cc of saline solution, as opposed to the 60cc he was planning to inject. I could probably take some more, but why making it more painful than necessary? Right now I feel some pressure from the added volume, but no pain. Moreover, with a sports bra on, one can barely notice that I am lopsided. My left breast is about half the size of the right one, but since sports bras squeeze the breast a little, and the implanted one is hard and cannot be squeezed, I look almost normal. I can’t wait to see what Bruce says!
Dr. McDorky is also planning ahead to recreate a nipple out of some extra skin left over from the surgery. And finally, cherry on the cake, he gave me the ok to resume exercizing, as much as I want. He just cautioned me to listen to my body and not do anything that’s hurting me above the ordinary. And he remembered that he has to talk to me in terms of grams and cc, not ounces or pounds! Oh yeah, I love him! How could I not?

Yesterday I saw my surgeon who explained what she had done and told me about the pathology report on my cancer. I had always wondered how much a breast weighs…mine weighed 335 grams (almost 12 ounces) on the pathologist scale. Not too shabby, eh? Anyway, as expected I had (notice the use of the past tense) multicentric disease (that is tumors located in multiple sites of my breast). The largest tumor was 2 cm. at its widest, there was no infiltration of the lympatic or vascular systems, thus it was a stage T1c (early stage). Yuppie! The bad news is that there were noninvasive carcinomas throughout (as we had suspected) and for one of them the surgeon could not excise as much healthy tissue around it as she would have liked (so the margin, as it is called, was only 1 mm. wide, where she would have preferred to have it at 1 cm.). Bottom line: the surgeon referred me to both a radiation oncologist and a medical oncologist, as she thought I’d need both radiation and chemo (plus hormone therapy, as my cancer tested positive to hormone receptors…another good thing). Francesca instead told me that the therapy in Europe would probably be limited to hormone therapy…so there is a good chance that I won’t need either chemo or radiation. If I have to do radiation it will mean that I will probably have to have another surgery to replace the implant, as it will likely be damaged by radiation…but I’ll wait to see what the oncologists say.

I heard people with disabilities comment on how “temporarily abled people” (among whom I used to count myself) often avoid looking at them. The disabled seem to not like that a bit. As a formerly abled I wondered how to look at the disabled without appearing to be staring or condescending; or how to not look at them without appearing to denying their presence and dignity. I am finally getting a taste of what the disabled feel like. For the first few days I was only in touch with my friends who were simply great: I could even show some of them the scar and they seemed not too shocked. But a few days ago, someone I know saw me for the first time after surgery and boy was it evident she was trying to avoid looking at my chest! She was trying to be upbeat about it, to cheer me up, to tell me that I had nothing to worry about, but it was clear as crystal that the absence of breast bothered her. I guess for her it meant I was now no longer ‘like anybody else’, a ‘normal’ person. I was a sick person, someone to be pitied. Of course, I don’t feel that way about myself at all. Inside I am the same person as before, and the absence of a breast does not change who I am. But people do see me differently, as somehow less than… So the other day I decided to put on a new t-shirt that Cynthia, Kristi, and Kristin gave me at the goodbye-boob party. It says ‘Please ignore my gorgeous tits’ right across the chest. Just because I have cancer it doesn’t mean I lost my sense of humor, and every time I put that t-shirt people will know!
I had gone to the doctor’s office that day to have a nurse help me milk my drainage tube. For the past 10 days, I have been going around with a plastic tube inserted under my skin making a curve from the sternum, up my chest, then coming out on my left side, below my armpit, and ending in a little plastic bottle. Every now and then, the tube gets clogged with a blood clot, and I have to unclog it. The technique for unclogging the tube is called ‘milking’ because, as my father observed, it is very similar to milking a cow. You use a disinfectant wipe to slide your fingers along the tube and help the drainage liquid (a mixture of blood and some other clear body fluid) go through the tube and into the bottle. I have had to monitor the flow and empty the bottle two to three times a day for the past ten days. Needless to say, I was ecstatic today to see Dr. McDorky who finally took the tube out! It was not without pain, but it lasted a short time. More painful was the insertion of a big long needle attached to a huge syringe, to drain some fluid that had formed (not unusual) on my side, where the implant valve is located. But he told me I am healing well, everything is normal. I still can’t use my arm and I have to get plenty of rest, no exercise for another week, but I am doing fine! Tomorrow I’ll see the surgeon and get the histological report.