What's been happening...

As some of you know, Greg and I recently returned from spending some time in Chattanooga TN. It was great! Hi Chattanooga, you guys are great! After all the events of the last year and a half, we really needed a little while away, and it was really fun. Among other things, for me, it was a much needed respite from constant contact with the medical world.

Although my active treatment slowed when I finished chemo (3-31-10), and was limited to one huge surgery and a couple smaller ones over the summer and fall, even in the in between times I was still spending a lot of time at the doctor. Part of this is because I'm lucky enough to go to an amazing oncologist's practice where I also see a nutritionist and an acupuncturist- hi Deb! Bay Area, go to Deb Follingstad for acupuncture of ALL kinds, not just for cancer patients! - but, anyway, the result was that I was still going there 1-2 times a week, on top of going to the free clinic to get herbs, the hospital for surgery related appts, and many other similar things. Additionally, my doctor and I had still been working on stabilizing my estrogen levels right up until I left (more on that soon). So finally getting to a stable place where I had a set routine, medically, and could just live for a while- it was a really nice break.

I knew that when I came back I would need to get back into treatment a bit, but I had hoped I could mostly coast for quite a while longer and continue the illusion of being somewhat past this that I was able to foster in Tennessee, but apparently it is a little premature yet for that. Warning! -here comes the medical details section!

As a patient with a hormonally driven cancer, it is important to limit the amount of  estrogen and progesterone in my body, as the cancer feeds on them. While it's true that the original tumor has been removed, any person with an invasive tumor already has circulating cancer cells sent out as sort of scouts for colonization. These are all throughout my body and cannot be removed. The idea of systemic therapies such as chemo is to kill so many of these cells that the survivors are too few to regroup and take hold anywhere in my body. Like colonizers they are insidious and must have their power taken away before they can do any damage to the native populations!! (In this scenario, my healthy liver or bone marrow or lung tissue cells, for example). Ahem. Right. Medical. Although --may I just sidebar for a moment here?-- may I add that political metaphors in the cancer treatment world are not just common but indeed the RULE and sometimes they are really intense and creepy!! I would love to look into how they change to reflect the political climates and times someday... Anywho- should they take hold and grow, I would develop a tumor, which would be a beast cancer tumor, wherever in the body it was located, and thus a metastasis of the original cancer, not a new cancer. This is important both because different cancers have different qualities and treatments, and because a metastasis would mean that treatment had failed and I would not be able to be cured- only treated to extend my life. SOOOO- it's really important to keep these cells DOWN!!

I do a lot to achieve this in my life- I have a pretty rigorous program of diet, exercise, herbs and supplements which I adhere to strictly. It's hard and expensive. But the biggest tool we have for this is estrogen limiting. There are new drugs which do this incredibly effectively and are saving a lot of lives- enough that I imagine over the next few decades we'll see mortality statistics drop for Breast Cancer from 1 in 4 to something lower, from this advance alone. The problem is, they may work too well for some of us. The idea is to get my estrogen very low, but not non-existent, because it's a really necessary part of our systems and we need it to live! When I started on the drugs (AIs) last summer, it didn't go well. Even before I got to the point where the physical side effects started kicking in, I began to lose my mind, sort of literally. I became severely anxious, distraught and depressed. I was experiencing bouts of hysterical, I-feel-like-the-world-is-ending tears every day, dealing with uncontrollable inappropriate attacks of anger, and having suicidal thoughts for the first time in my life. It was, obviously, unsustainable. The problem was that the drugs were scouring out too much of my estrogen- discussion about how hormones control what we think of as our "selves" and preferences sometime? fascinating stuff!- despite the fact that by the time I went off them I was taking only a quarter pill every other day. However, hallelujah, I was able to put together a plan of nothing but holistic remedies which kept my estrogen low enough without side effects! Hooray! All was well...

Until just now when I got home and it turns out it stopped working. My levels are up and rising. My options are to do nothing and hope it's ok, that my good response to chemo killed enough cells that the remainder won't be able to take hold even with an estrogen smorgasbord, or to go back on the pills. I can take less and less of the pills, but little is known, as yet, about how they work. So, for example, is it better to take one a week and potentially experience ups and downs in my levels each week (including possibly dangerous spikes, constantly) or to maintain an even level, though it may be higher?

For now I'm going back on the pill, a half every 4 days, but there's no real reason to think it will be better. Which leaves me with some hard choices ahead. I'm not looking forward to this.

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The other tool I have at my disposal is a drug called Zometa. It is a chemo treatment which has long been in use for treatment of osteopenia (weak bones) and cancer which has metastasized into the bones (the most common site of BC mets), but in recent years studies have shown it to be effective in reducing recurrences in BC patients with my general disease profile (the most common form) and personal stats. The trials that would have tipped it over the edge into general use completed earlier this year- but it didn't show effectiveness in a wider setting. Meaning the drug company pulled FDA application, meaning insurance won't pay for it unless I get mets- IE, too late! It looks good for me. My doctor wants me to get it. I want it. But costs $1500.00 per treatment- I could do once a year, but if I'm not going to be on the AIs I really want to do it twice a year (for 5 years).  But I don't even have enough $ to do once a year for 5 years, so that's a problem! I'm getting it once for sure, next week, and I'm just going to pay for it. But after that.... this is a truly wretched situation. If anyone has or knows someone who actually really has a lot of money and would sponsor me for an entire treatment, or part of one? That would be a real relief. Other than that, I don't have a lot of ideas. I've been putting this off and hoping the problem will somehow solve itself, for a long time now, and it just doesn't seem to be happening. I prefer not to think about it because it seems there just isn't much to be done but this, too, is becoming an unavoidable problem over the next year or so.

(note on the financial aspect- that price is wholesale, my doctor is already not charging me the normal price, and patient co-pay assistance orgs won't help because they only help with things covered by insurance. I have been trying every avenue for a year- I should've started this at least 12 months ago, that's why I haven't)

Anyway. That's what's happening. So I have to say, I feel stressed being back home. I definitely feel right back in the middle of it, which is sad. But maybe it was too soon. There's no question that I was anxious to put treatment behind me (who wouldn't be!) and maybe I tried to rush it a bit. So if you see me and I don't seem so so happy to be home... well I am in some ways. But it's a little hard too. It was nice to pretend I was someone else for a bit. And someday I will be that person again. But for now, I have a little more of this to endure. Happily, I am enduring it in a place where there are many people, places and things that brighten my days and enjoying my favorite time of year here in San Francisco, with the mist and drizzle and the sun and the mild days. I could live without the wind, but like most things, it won't last long.

why

So, Greg set up a facebook group soon after I got diagnosed with the cancer, back in late 2009. I eventually began posting updates there directly, rather than through him. Now facebook is getting rid of the groups, and that was awkward and weird anyway, not to mention inaccessible to non-FB users. So the kick in the pants is good, and in realizing that would be going away, I realized it might be good to keep a place for updates still. We've all moved on from the urgency and fear of the initial crisis, including me, but the fact is that I am still in treatment, still often afraid, and have various crises and milestones, and why not let you know what is happening? It's no secret! So I'm going to start maintaining this.

Below, I just copied all the little updates from the FB page. They are, of course, backwards. As for actual new info, I just spent forever making this stupid thing- that'll be tomorrow or the next day probably. Look for it.

archive- a year of treatment in one blog post. oof.

        11-28-10

I'm supposed to start Zometa soon- it's a preventative treatment that new studies show having a dramatic effect in reducing recurrence rates. Unfortunately, it is not yet covered by insurance and is very expensive ($1500 per treatment). My onc says we'll just do it once a year because of the cost and it will be fine, but the official recommendation is every 6 months. The studies were based on every 3 months! (All of this would be only the first few years. Also, insurance should start covering it soon- hopefully by next year.) I hate that I'm going to be doing less than I could be because of money. If anyone knows someone rich looking for a cause, I'd really like to get this treatment. I figure, can't hurt to let people know, at least.

10-29-10

No news is good news.

9-1-10                                                                                                

Surgery went fine. The year anniversary of my diagnosis came and went and though I knew it was coming, I forgot until a couple days after (today) so, whatever. A whole year! Thanks for all the help, all this time, folks.

8-14-10  

I'm doing fine. Re-integrating with normal life, trying to learn how to manage my newly crazy curly short short hair (chemo curl, they call it. It lasts as much as a couple years), and getting ready for my last (supposedly pretty minor) surgery on the 23rd. So far so good I guess. It's hard, and I'm still trying to iron out my long term Rx situation (we've had to halve my dosage due to side effects) (as per usual with me) which is cool except that only full dose is studied and proven to work so it's scary and I'm going to be really vigilant about monitoring my various kinds of estrogen levels (which is what the drug controls) and if they go up, I'm going to have to take the full dose no matter what the SEs are. But the chemo worked fine at lowered dose so I have high hopes for this situation being the same. Plus I'm doing all the alternative stuff I can towards the same goal also. That's about it.

7-18-10

I feel pretty normal most of the time now. I am very tired, pretty much always, and don't feel great, but I'm fine. I do normal stuff, my hair is growing back enough that I look more or less normal (to other people at least). I have one more minor surgery for the reconstruction stuff (in late August) but hopefully that will go smoothly, and if so, I will be pretty much done about exactly one year after my diagnosis. Some things will not go back to the way they were before, but just for me really. I guess I'll just seem regular to you all. I'll never be able to eat the way I did before again (and I ate better than anyone I know pretty much), or drink more than just a little here or there, and I'll just generally have to be real careful forever. But you can kind of get used to anything I suppose. So here's to getting underway with the new normal, and here's to hoping it sticks for a long long time... Here's hoping no more cancer!!!

6-12-10

It's a bit better I think.

6-1-10

Arimidex sucks. I hope this gets better.

5-20-10

Hi. Well, I'm recovered up pretty well from surgery. Not 100% done, unfortunately, but I'm doing/feeling great, the professionals all say I look good and I'm pain free (for a while now). I'm out and about and basically back to normal, with mobility, etc. Also I got my final pathology report back, and it looks great! The lymph nodes were all negative for cancer (as I said before) which is a BIG DEAL, especially because I had cancer in the nodes at the beginning. So that's huge for my odds. And the main cancer mass had only 1% of the cells still living, which is terrific! That means 99% were killed! This is great. It doesn't get much better! So while I still need to take all the relevant steps to make sure this never comes back, things do not look bad. As far as those steps, I will be starting Arimidex in a couple days and will take this or another drug of it's type (http://en.wikipedia.org/wiki/Aromatase_inhibitor) for the next 5 years, which will improve my odds even more (and get me through the most dangerous time). This is a great drug to have available and definitely worth it, but it does have some side effects including bone density loss. So I will also get a yearly (or more if needed) infusion of something new called Zometa, previously only used for patients with advanced stage cancers in the bones, but which is now just beginning to be used with great effectiveness to prevent recurrences to the bone (the most common site of spread for BC), and is also a treatment for osteoporosis. That's about what's what...mostly wanted to share the good news with all. This is a really good result. Things look positive. You can't ever know anything for sure, but having really good odds means, well, I have really good odds of being ok. And that's good. love to all- Anandi

5-8-10

hi- just wanted to say I'm healing up "really well" and everything is "beautiful" (healing wise) according to the pros. Also I feel pretty okay. Off the painkillers, able to do normal things, etc. That's all. xo-Anandi 

 4-27-10 

From Greg: Anandi got out of surgery today around noon and was in a private (!!) hospital room by 2 pm. Everything went as planned and she is staying at the hospital overnight. The doctor removed some sentinel nodes and they tested negatively for cancer. So, good news! The full report will not be back for a week, but everything seems to be running as smoothly as these things can go. She is in a lot of pain and pretty groggy from all of this, but she's in pretty fair spirits. I actually got her to laugh a couple of times between the nausea and intense pain. Lee, Sarolta and I have been with her around the clock (along with an amazing hospital staff) and we're doing the best we can to make sure she's doing well. Thank you all! oh yeah, her doctor sang Patsy Cline to her as she was going under for the surgery, which made Anandi very happy.

4-1-10

Had my LAST CHEMO yesterday! No april fools, for reals. Not much to report but I guess it's pretty exciting.I've been getting chemo for SIX MONTHS!!! Half a f$%&** year! Unbelievable. I just hope the surgery path reports come back ok and I never have to do that again! That's all.xo-anandi

3-10-10

Hi everyone! As I approach the end of chemo and the beginning of the next phases of treatment, I feel it may be time for a little informational round-up. So here goes... I have completed A/C chemo and am in the last month of 12 weekly doses of Taxotere. My last chemo treatment is scheduled for March 31. Because of my great response to these drugs, I am set to move on and will be getting surgery on April 27 (a month passes to give me time to recover from chemo so I am able to tolerate surgery). More on that later. After surgery I will start hormone treatment (this is technically a hormone blocking treatment and as such, the opposite of HRT, which causes cancer) with something called an aromotase inhibitor, which will continue for 5 years. Both more and less time than that have been shown to have less benefit. So -- 5 years. I will probably take Arimidex, a drug which is marketed like crazy so now that you've heard of it have a look- there are pens, notepads, etc, EVERYWHERE. I myself already have a pen and thermometer and I haven't even started taking it yet! Anyway. While in some ways I will soon be finished with treatment, technically it will continue, for me, for a long time yet. True, I am already, with the newer chemo, not so sick, but I will no longer have to worry that I could be again at any moment -- I will be able to go out of town and out of reach of a hospital for instance. So that's great. And it will be the kind of treatment that can be integrated into day to day life and mostly ignored. It will be fine. But the reason I'm mentioning this is to explain why I won't be having a party to celebrate the end of chemo, for example. I sincerely hope I will never have to get chemo again. And that is great. But for me, this marks the end of getting taken care of, the end of the part of treatment that is mapped and certain, and the beginning of the long scary rest of my life, which will never again be the same. I have a lot of adjusting to do. While some cancers are most likely to recur in the first few years (meaning that after that you can (kind of) relax), hormone positive cancers, like mine, are no more likely to recur in 2 years than in 10 or 30. I'll probably be fine. But even if I am cured, I will never know that. Additionally, on a more short term note, reconstruction related stuff is going to be actively happening until at least the end of summer. About that- I feel a little more private about surgery than I have been with most stuff so far. I will be getting a bilateral mastectomy with reconstruction. Beyond that, I'd prefer not to go into it. Both surgeries will be done at once, so it will be a long, major surgery- at least 6-8 hours. In addition to the mastectomy, they will be performing a sentinel node biopsy. This means they will remove a few lymph nodes and check them for cancer. If they any of them are positive, they will remove more to determine the extent of it. They will also biopsy the breast tissue at this time and this is when they really confirm whether the chemo worked as well as we think and after all this, they'll give me a statistic likelihood of recurrence (aka spread later on). This all is likely to look pretty good, FYI. After surgery, I will be a mess and unable to do much with my arms for a bit. There will be a lot of physical therapy. Ugh. This is long and my brain is getting fuzzy. If there's other stuff, I'll get to it in a future update. xoxxo Anandi

2-23-10

So there was a benefit show on my behalf on Feb 12 at Gilman st- Pinhead Gunpowder, Grass Widow, The Mutoid Men, Fleabag and Dirty Marquee played, and it was a sold out show. I just wanted to thank everyone who was involved in/played at/came out for the show- it was awesome and a huge success! All the bands were great, the crowd was positive and friendly- it was a really nice feeling event- I had a really good time and I hope everyone else did too. And we raised a HUGE AMOUNT OF MONEY!! Which is so so awesome for me in putting my mind at ease...I am already much less stressed than I would be thanks to the money raised through this here very page, but this is great too! So- thank you to the bands. To Gaylen for having the idea to do this for me and making it happen. To Robert Eggplant for getting the night at Gilman. To everyone at Gilman. To Kyle (and friends I think?) who made amazing cupcakes and somehow made $140 selling them for fifty cents apiece! To Greg for making beautiful silk screened posters and selling them at the show and for being the best boyfriend ever. But most of all I want to thank everyone who came and donated- I did the math, and every aspect of the show- the door, the posters, cupcakes- made at least twice as much as it would have if people just paid what was asked rather than donating more. Which is really touching and amazing and inspiring to me. So thank you. Very very much. As far as treatment goes, there's not much to say. I'm still getting the weekly doses of Taxotere and it is still way way better than the previous chemo. In fact, it may be getting easier as time goes by, as I'm getting less and less steroids and benedryl each time as I continue to not have an allergic reaction to the chemo, and it's the steroids that had given me the most trouble. So that's pretty cool. I still don't have any hair or energy but sometimes it's like I'm not even getting chemo. I have 5 treatments left as of now, then surgery. Home stretch! The updates have been less frequent and will probably continue to be- but no news is good news! lots of love- Anandi

1-21-10

Not so much to say- just wanted to tell everyone that my halfway point MRI came back looking terrific!! Everyone down at the doctor's office was/is very excited and patted me and exclaimed a lot. (I mention this because they have a lot more basis for comparison than you or I so if they say amazing, I guess it is.) It shows a 75% reduction in tumor size! Which means treatment is really working for me and gives room for a lot of hope for the future, a nice long cancer free future ideally. Also the new chemo is a breeze compared to the old one! The first day or two isn't so great- it's big time allergen so they have to give both steroids and benadryl with it, and the steroids are really a nightmare for me and I have to take a lot of Valium and my brain turns to agitated, upset mush- but then after that I feel- kind of normal!! So hooray!! Also my endless blood count issues (I have freakish marrow apparently) may finally be resolving! Here's hoping... As usual, thank you so much everyone. I feel so lucky to have the support I do, and I truly believe that it has a LOT to do with how well things are going, in a lot of ways. You all are great!

1-7-10

Well folks I am halfway through chemo. How about that? 2 days ago I started on the 2nd half- a different drug- and I'll be doing this for a while now, weekly. So far? Less sick more confused. It's really doing a number on my brain power (and sleeping ability which helps none with the old thinking part). This is definitely a new challenge and pretty hard, not being able to think clearly or remember (let alone say) what I need. But I'll deal. And I can eat! Hurrah! The good news, again, is that everyone who's seen me for my halfway through checkups (a bunch of doctors) agree that my response to treatment has been/is great. So. That's about it. Also I'm on the computer much more now, so while before you couldn't get ahold of me this way, now you can! Ok..xo anandi

12-21

Just treatment as usual mostly. I am now getting a reduced dosage( rather than just further apart treatments like i thought i would be) and it's much better! The scary risk with less is that it would not work but it cautiously, kind of, seems to be. I think this is maybe what chemo is like for most people (judging from the books and stuff)- you just get sick for a week, then feel OK till the next treatment. Wow! This is an amazing improvement and I can definitely handle this, now that I know what the alternative is. But soon I start the different kind of chemo, so back into the uncharted. Sigh. THANK YOU to everyone who bought donated or looked at art on the art auction!!! it was incredibly, unbelievably, successful and amazing! yay!! thank you sarah brown!!!!!!

11/22

I was in the hospital all last week. I'm better now and out of danger though- here's the story. I had chemo about a week and a half ago and was having a pretty hard time for the first week afterward, but on Thursday when things should have been looking up, they took a turn for the worse. I developed a fever. It developed that I had also become severely dehydrated. By Sat night I was being admitted to the hospital with a fever of 104. My white blood cell count was drastically low and I had infections of all kinds in my body as well as oral thrush and mouth sores. My red blood cell count was also low. I received transfusions, mind boggling quantities of IV antibiotics, white blood cell booster shots and a bunch of other stuff. I was released from the hospital on thurs night with a clean bill of health (all things considered). YAY! Being in the hospital was truly a nightmare and extremely traumatic at times. I am extremely happy to be free once more. My white blood cells are on par with those of a normal person, my infections cured, my mouth sores healed and I do not have (nor ever did incidentally) the swine flu. It seems that maybe the white blood cell booster that is standardly given with chemo simply DIDN'T WORK on me? Such is the theory. We'll see. So I meet with my oncologist, and given that plan A almost killed me, we will be devising a plan B of treatment. This will certainly involve switching from the "dose dense" treatment plan (every 2 weeks) to the every 3 week plan, which hopefully will make things easier on me, but will certainly mean a longer outlook overall, and possibly other changes as well. No, none of this will affect side effects. This is all about white blood cells, a separate issue. In other awesome and amazing news, using the book "share the care" (apparently the standard in organizing to help out a sick friend) a large group of local folks have organized into a group calling itself "scare the bear" with the aim of providing the care and support I desperately need. This is incredible and so far is working great! People are available to help me through the very very sick times following chemo, to cook food, drive me to appointments, and whatever else comes up. It was great to have help and company in the hospital, for example, and the nurses commented on my great support team. This is truly needed and I don't know what I would do with out it. Thanks! thanks to all! xo anandi

RECENT NEWS (Oct 19th, 2009) HI. I started chemo on fri. Just wanted to let folks know. I guess there won't be much more by way of news for quite some time, other than "still doing chemo, still sucks." The plan is to do chemo treatments once every 2 weeks for 4 months, first 4 rounds of A/C then Taxotere (look it up if you want, it's the standard for breast cancer), then surgery after. If the tumor is non-responsive, or extremely responsive to something, the plan will be tailored, and will change. I get chemo, then feel like hell for a few days to a week, then feel a bit better, then start over. At least that's my understanding; I only started a few days ago. It is cumulative, so the feeling bad will be worse and worse as time goes by, but I am doing the harder drugs first. Yes, I feel nauseous but the drugs help. Also, I switched oncologists. I am very lucky in that I am able to go see a Dr Garret Smith, who is in a small private practice, very personal and hands on and a really great seeming guy. Yes, I am very very lucky, people. I have such great care, and support, and all this love... I just don't know where I'd be otherwise. Thanks. and love. Anandi

IN RECENT NEWS (Oct 11 2009) From Anandi: Getting up to date: About 5 weeks ago I was diagnosed with a cancerous tumor in my breast. The plan for treatment has been to do chemo as soon as possible, followed by surgery in a few months. However, the beginning of chemo was delayed by the finding of a mass on my ovary. Because the doctors feared that it might be malignant, it was necessary for me to have it removed right away. Because I tested positive for a gene mutation called BRCA2, which makes me much more likely to get ovarian cancer in the future than most people, I opted to have both of my ovaries removed at this time. This operation was performed on Thursday; the mass was benign. I am now recovering from that surgery. I am still in bed and feeling pretty rotten, but considering that I just had surgery I think I'm doing pretty well, and I expect to be up and about within the week. I will be beginning chemo extremely soon. When I know more, I will post. THANK YOU VERY VERY MUCH TO PEOPLE FOR DONATING!!!!!!! Love to all and thanks for being out there, Anandi.