Catia Bitching Cancer

I have to admit it, I’m having fun. The fist time was when the LA Times called to ask me to restart my subscription. The guy tried to entice me with a free subscription to a beauty magazine. After having been on the phone with him for 10 minutes trying in vain to get him to stop trying selling me the paper, I commented rather dryly but sarcastically on his offer telling him that the offer of a beauty magazine with pictures of people with beautiful hair on their heads didn’t quite appeal to me, given that I was scheduled to start hair-dropping chemotherapy in a few weeks. Undaunted, he then offered a cooking magazine. This time I snickered and said something about how inappropriate the offer sounded to a woman about to experience chemo-induced nausea. I think that did it for him.

Then I had fun at the YMCA, where Kristin and I have been swimming laps on and off for 2 years (though we haven’t done it together for a while). Oftentimes there is a concurrent senior water volleyball game going on while we do our laps. Among those seniors a few women come all made up and drenched in (cheap) perfumes, which makes breathing and getting some cardio action in the pool a lot less fun (especially for Kristin who has asthma). Kristin tried to politely talk to them last year but she was scoffed. The other day I decided to play the cancer card. The women playing have all seen me naked in the locker room, so they all know that I had cancer. While I was doing my laps I was invested with the strong and unpleasant scent. I stopped in the middle of the lane. I apologized for interrupting their game and then quite simply told them that, since I was doing chemo and was nauseous, I would appreciate it if they came to the pool with no perfume on. They all pitied me, suggested I moved to a lane farther away from the woman with the perfume (who was denying wearing a perfume and said it was body wash….whatever… but they all knew who it was!), and finally thanked me for letting them know about it so they could help!

Bruce too has fun playing the cancer card with telemarketers. The only time I came short of using it was when NOW called me asking for donations. I couldn’t bring myself to use it, though the woman was very insistent and borderline annoying. I just said that although NOW had my full support, because I was dealing with a serious illness I couldn’t help them financially for the moment. I didn’t mention cancer, though probably I should’ve.

Then with some friends we are going to do the Komen 3-day cancer walk (for more information visit their website: http://www.the3day.org). In order to participate in this 60 mile walk, each participant commits to raise $2,200 to benefit the Komen Foundation (which invests in breast cancer research and, most importantly for me, in breast health care and treatment for the underserved in the US and other countries). I figure I’d better sign up and start fundraising as soon as I start losing my hair: it should be much easier to get money from local businesses if I go in and ask for it while wearing a head scarf, shouldn’t it? Dare to say no to a bald woman?

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!

After I wrote my Kaiser defense blog, my friend Marg wrote me an email. I paste it right below with her permission.

Catia,

Just read your blog. I’m so glad your getting the OncotypeDX test.
It sounds like a great idea.

I also have heard many comments from people who assume Kaiser isn’t as good as their own PPO, but I have to say in defense of Kaiser, since everything they do is “in-house” as far as laboratory testing, radiology, mammography, et cetera, their doctors have far more autonomy to order tests and other procedures than PPO doctors who have to submit for approval before they can order outside tests for their patients.

Another matter that I’m aware of is PPO doctors basically being paid on a per-patient or capitated basis for their services. When they have to refer their patients out, they get less money from their pool of money. In other words, it puts the doctor in a conflicted relationship with their own patient. The more they refer out, the less money remains in their practice. So is it likely that they’re going to make all of the necessary referrals?

One more thing. In my experience, with my history now, my doctors order extra tests for me at the drop of a hat. I haven’t had the feeling that they’ve tried to cut corners at all.

Hope this helps,

Marg

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!

I got the OncotypeDX score: 14. The clinical trial coordinator at Kaiser who called to tell me was all excited for the good news. A score of 14 makes chances of recurrence within 10 years quite low at about 8.9%. However, this score doesn’t help me decide whether to do chemotherapy or not. It would have been a score that would’ve put me in the randomizing arm of the tailorX trial I applied to be a part of (and was rejected). So, I’ll see what Dr. Faith has to say today when I see her. For all my complaining about waiting, now I wish I had a day or so more to discern what’s the best for me.
Oggi vedo la mia oncologa. Il risultato del test Oncotype e’ 14, il che vuol dire che le possibilita’ che il cancro riappaia nel raggio di 10 anni sono dell’8,9%. Non male, eh? Pero’ il punteggio non mi aiuta a decidere se fare o no la chemio. Oggi vedro’ la mia oncologa e ne parleremo insieme. Con tutte le lamentele che ho fatto perche’ mi facevano aspettare, adesso quasi quasi vorrei avere ancora un giorno per decidere….

The TailorX trial people rejected me because of the close margin on the DCIS. But Dr. Faith decided it was still worth it to know my OncotypeDX score, so she went ahead and ordered it. Only thing is I’ll have to wait another week before knowing it (next appointment scheduled for January 17th). That means I won’t be able to start any treatment before next week. It’s mindfucking waiting over and over again!!!! But I talked to Francesca today and she didn’t seem too upset about the delay. It’s just emotionally draining, that’s all.

On another note: I have had several people telling me how sorry they are about me having Kaiser as a health provider. Of course, my friends are all worried that I get the best possible care. But in a way it’s unnerving for many reasons. First, my troubles with doctors, appointments, the refusal of a test that I think is important, etc. could have and have happened to people with other types of insurance. The treatment that Kaiser oncologists suggested is very reasonable and has also been suggested to me by other oncologists via email. My disagreements with my own oncologists revolved around their inflexibility (in my opinion) to consider other options, and their not treating me like a rational well informed human being with the right to participate in her own treatment decisions. But that could have and has happened to other women I know with different insurance plans. Moreover, I know of several women who have had to battle insurance companies to get medicines or tests their doctors thought they needed, or to get their insurance companies to pay for services they had already received. This doesn’t happen with Kaiser: once a doctor decides to recommend a treatment/medicine/test, you get it, that’s it. No bureaucrats to fight with. In my case, it was the oncologist who decided (wrongly in my opinion) that I didn’t need the OncotypeDX. Well, I found another doctor who did. I also know of many women who had to visit two, three, four oncologists before finding the one they felt comfortable with. So did I. The only trouble with Kaiser is that you have to use Kaiser doctors. But their network is so vast that if you are willing to travel you are bound to find a doctor you like. In my case I’ll have to go to Hollywood. Big deal! I also want to mention that I could have chosen any other plan through Bruce’s employer. We could’ve gone PPO. But I love Sandro’s pediatrician, I love Dr. McDorky, I love Dr. Faith. I think we have excellent doctors and we’ve had perfectly good care throughout the years we’ve been with them (and Sandro’s ear and asthma troubles when he was littler required a lot of attention!). Finally, let me also mention that I think Kaiser is the closest we have in this country to socialized medicine. It’s the only nonprofit insurance company I know and this choice for me is as much political as it is personal. So please don’t ask me again to switch!

It’s the title of a comic book Bruce gave me for Christmas (visit the author’s site at www.miriamengelberg.com ). There is, as you might expect, nothing shallow about it. I devoured it in a couple of hours. It spoke to me like no other cancer book before or since. I laughed and cried and found myself in the main character more than I would ever imagine. And its author, I found out last night, died in October, from brain/bone metastases of a breast cancer diagnosed in 2000. She had a little boy, must be around Sandro’s age, maybe a little older. It was hard news to digest.

I have a whole collection of new friends. I call them my cancer friends. Most of them I actually never met in person. I found the first one when I wrote to a dissertation support e-list asking if any of them had any suggestions on completing the dissertation while undergoing cancer treatment. She wrote to me privately and we’ve been emailing since. Then there is a friend’s mother, who lives in Bangladesh. My friend emailed me when I told her of my diagnosis, desperately worried about her mother, whom she feared would not get adequate treatment in her country. Her fears are not unfounded, and the reasons for this situation have to do with the tremendous disparity between the obscenely rich north of the planet that like a parasite lives on the misery of the remaining two thirds (yes, it’s most of us, my friends! Guilt-tripping anybody?).

Two other cancer friends are actually friends of friends, one I personally met. I talked on the phone with the other. This last one suggested I join an online support group for cancer patients, survivors, and their friends and families which she belongs to (www.bclist.org ). These women and some men have been an incredible resource of personal support, information, laughter and inspiration. They often refer to the list as ‘the club no one wants to join’ or something of the sort. They are full of humor, in a way that it’s hard to believe, considering some of them have mets (cancer-patients’ lingo for metastases). The downside of belonging to a group like this is that death stares at you shamelessly, mercilessly and continuously right in the face. That’s sort of what happens when you have cancer anyway. Both comic books on cancer I got for Christmas acknowledge that and depict the main characters often conversing with the hooded and sickled sinister figure. But reading the monthly ‘in memoriam’ list and following each member’s journey through exams, old medications, new medications, side effects, tumor markers’ peaks and dips, cancer conferences, families, celebrations and anniversaries is a harrowing trip through the reality that there is no life but life with cancer for all of us, that cancer and the sickled figure are always lurking. That should be sort of obvious and part of everybody’s life, shouldn’t it? After all, who said that life is a terminal illness? But somehow we escape until we are faced with something like this. When cancer happens, there is no escape.

After I learned about the death of Miriam Engleberg, I figured that I wasn’t going to be able to sleep, despite the wee hour. Thank you California voters for passing prop 215! I went out and hit a couple of perfectly legal puffs. Then put my sorry old cancerous self to bed.

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!