Tag Archives: breast cancer surgery

When Pigs Fly: More Thoughts on Komen . . .

24 Jan

This year I could not have been more grateful for the month of October (aka: Pinktober) to end. Next year, my plan for getting through Pinktober (and SGK’s pink peddling and pushing) is to simply do all of my grocery shopping online and at local farmer’s markets. I want to limit my exposure to the sea of pink. And, I don’t want to be asked again at a grocery store checkout stand if I want to donate to Susan G. Komen “Race for the Cure” [sic] (And by the way, I mean “SIC” as a double entendre).

Just one of the many pink products sold all year long: a Komen Pig Note Pad. But, take a closer look below . . .

When you’ve had breast cancer you have a whole different insight into the world of pink ribbons, pink products, 5ks and three day walks and so on that are all supposed to raise money for a cure and to help women (and men) with breast cancer. I used to think that SGK was using their money to benefit women with breast cancer and to help find a cure. But, I learned quickly, the hard way, that SGK will not be there for you if you need their help. See my earlier post on how SGK abandons breast cancer patients and leaves us in the cold. (I personally called SGK’s advertised phone number that breast cancer patients are invited to call for financial help over 100 times) and not once did I ever reach a live person, not even a voice mail where I could leave a message – in my opinion – what they did – what they did NOT do – while claiming that they would do something – was fraud).

I know many people who love the pink ribbons and love the Susan G. Komen Foundation and their pink rose ceremonies and pink balloons and 5k walks and  – sadly – they think that buying pink will help eliminate breast cancer . . . one day. They think that buying pink will somehow help someone like me.

So why am I talking about this in January now? I was out picking up some office supplies at my local Staples store and did a double take when I saw all of the Christmas displays and seasonal products for the holidays replaced with pink, pink, pink. Seriously? Is it necessary for this to be a 12 month thing now?

I decided to take a stroll throughout the store and take in all of the pink, just curious about whose name is on it and where this pink-breast-cancer-curing-money is really going. Nearly every product I saw at Staples that was pinked was done so in the name of the Susan G. Komen Foundation. Not much of a surprise really.

Maybe when pigs fly we'll have a cure . . . until then, by all means, let's keep "benefitting" SGK!

But, here is what really surprised me . . . they don’t even claim any more to be giving the money to “the cure”. Instead this is what the Susan G. Komen pinked products I found now say: “benefitting” The Susan G. Komen Foundation . . . at least they are being honest about it now . . . where the money from your purchase goes . . . “to benefit The Susan G. Komen Foudation”.

It certainly did not go to benefit me or anyone I know who has had, survived or died of breast cancer. I love this complete lack of accountability (not). I guess it is just par for the course. The sad thing is that people buy this stuff thinking, believing that it will actually lead to a cure . . . yeah, maybe when pigs fly . . .

Cancer’s Grip . . .

17 Dec

I want to preface this post with this: I am grateful everyday that I am still here.

English: A busy day on Third Street Promenade ...

My oncologist's office is near here . . . Third Street Promenade in Santa Monica. I always stop here at a favorite lunch spot . . . try to turn oncology appointments into a fun outing . . . 🙂

And now . . . something I don’t like to talk about . . . that fact that I experience pain everyday. Ever since chemo and radiation and all of the surgeries it has become what is normal. So now, it is just simply a matter of degree . . . it is either a bad day or a not so bad day or one of those days where you are so distracted by something beautiful or wonderful or fun that you forget your pain. That is what “post cancer” is like for me. At least right now. I have great hopes that I will be better with each passing day, week, month. And really, so much suggests that will happen. But, it is progress that feels very slow. I don’t know if I will be pain free one day, but, I hope that is possible.

But, until then, there are many things that help.

Laughter makes me forget the pain. It is truly good medicine.

Breakfast with a good friend makes me forget (thank you for that today, my friend).

Playing music and singing makes me fo

rget.

But, tonight I am worried. Tonight I am experiencing another type of pain from cancer: it is called FEAR.

A few weeks back a family member had a cancer “scare”. It was skin cancer, but, thank God, not the “bad” kind. And so a little surgery, a little reconstruction and a few weeks later he is all healed up and no one would be the wiser.

But, now this week, another person very dear to me was diagnosed with skin cancer. We don’t know yet whether it is the “good” kind or the “bad” kind. And, so we wait.

And just today I found out that someone else very dear to me, is waiting on test results for what might be cancer or might (hopefully) be something else.

I fear cancer more now than I ever did. I know what chemo is like, what radiation is like, what being made sick in the hopes of one day being made well, is like. And I know what life is like after cancer. And so when I think of someone very dear to me having to possibly go through that . . . I can not bear it. I am not saying that I wouldn’t be worried about it if I had not been through treatment myself. But, knowing what cancer can visit on a person makes it a whole different worry . . . to actually think that someone I care about might have to endure all of that is painful, frightening.

And, then there is my own fear for my own self. The fear I feel guilty for having . . . the fear of a recurrence. It is something that comes and goes . . . some days it is on my mind and some days it is not. I feel guilty for having that fear because I know so many people who have had a recurrence, who have terminal cancer, who will never end their treatment because treatment is what keeps them alive.

So my fears seem pretty petty when I look at it from that lens. But, these are real fears to me and yes, I feel guilty for feeling that way . . . almost like I feel sorry for myself. I hate that. I don’t like feeling sorry for myself. But, fearing a recurrence seems somehow akin to self pity, feeling sorry for myself, feeling like a victim . . . and that, to me, feels wrong. And, it definitely feels like a waste of time. But, sometimes it is just there, that fear, and there is little that I can do on those days to get rid of it.

Monday I see my oncologist because there is something on my right breast that does not seem normal. Some red spots. Maybe it is a rash. There is also a new pain in my right breast. Which, if you think about it, seems really odd since I don’t have breasts any more so why would I feel pain inside, where my breasts used to be . . . both were removed and replaced with implants . . . and as far as I know, implants don’t feel pain. So I don’t get it, don’t understand why I would have pain there where there is nothing that belongs to my body in that place. But, it hurts. And there are some red spots. Hence Monday’s appointment. (Oh, and just as an explanation for those of you reading this who have had breast reconstructive surgeries . . . I am used to the pain at the scar sites, but, this is different. Maybe this new pain is even normal. Who knows).

Maybe it is just a rash and maybe the pain is from something I did physically different this past week. I don’t know. But, my oncologist, who is going out of town for ten days, wants to see me before she leaves. She told me to either come in today or on Monday. I am angry and I am afraid. On the one hand, I am grateful that she is so accommodating and that she is able to see me before she goes on vacation.

On the other hand, I am alarmed that it can’t wait ten days. Or, why can’t it wait until my next scheduled appointment in February? Nope. I see her Monday.

A friend of mine has offered to drive me to Santa Monica on Monday (my oncologist is in Santa Monica). At the time she offered to drive me, I almost turned her down as it really didn’t seem necessary. But, now, as Monday looms and I have had a chance for my oncologist’s apparent urgency to see me to sink in, I believe that by Monday I may very well be a basket case. So, I am taking her up on her offer of a ride. And, we will make it fun. Santa Monica is a nice place to visit. We have a few favorite spots to eat, to window shop etc. There are some good distractions at the Third Street Promenade.

A rash. What a bunch of nonsense this whole cancer fiasco is . . . that some pain and a rash cause such a degree of alarm. God, I hope it is a rash.

That is what I hate the most about cancer . . . the fact that what might just be a rash stirs up all of THIS. A rash. Pray that is a rash, will you?

And pray that my friends waiting for results both get good news too.

Damn, fucking cancer. Fucking cancer.

I know, not the best language. But, sometimes that is the only word that works.

Thank you for your prayers and positive vibes.

Love and peace,

Lisa

Birthdays . . .

30 Nov

Yesterday was my birthday. I had lots of things swirling through my head yesterday. Birthdays are kind of weird for me now. Mostly I am just grateful to have had yet another birthday and extremely grateful to have one that is cancerfree.

This same time in 2008 I was sick, but, didn’t know it yet. Well, that isn’t quite true. I knew something was wrong. I just didn’t know that it was cancer. I was tired all of the time. My body ached. I had intense night sweats. I was told by my doctor that these symptoms probably meant that I was going into early menopause. It never occurred to me or to my doctor that it was in fact breast cancer. But, a few months later I would have a mammogram come back with something suspicious and then everything suddenly made sense – I instantly knew why I was so incredibly tired all of the time.

Marahon shoes

Fast forward through a couple of years (wish I could have . . . ha, ha, ha) of cancer treatment and multiple surgeries (months of chemo, followed by a bi-lateral mastectomy, followed by multiple hospitalizations for post-surgery infections, 6 weeks of radiation, a year of Herceptin infusions, months of daily nurse visits to administer IV antibiotics for the post surgery infections, two reconstructive surgeries – still one more of those to go – lots of trips to the ER and probably a few other things I can’t remember) and here I am . . . on the other side of it all. Or so it seems.

So, this is a birthday that I did not know if I would have. Of course we never know what tomorrow will bring. But, having clawed away through most of that first year post diagnosis to be here, it is really quite something to still be here.

Last year on my birthday I was recovering from surgery. The preceding birthday I was going through radiation treatment (had finished chemo and made it through the first surgery a few months earlier) but, still had two more surgeries and half a year of Herceptin infusions ahead. When I look back on the last two birthdays it is amazing to me that I am as well now as I am.

I don’t know how many more I will have, no one knows how many birthdays they will have. But, it is really something to be here in this way today. Last year was tough, the year before was kind of almost not really bearable. In fact, I remember wondering if I would have another Thanksgiving, another Christmas . . . you get my drift.

Since being diagnosed in 2009 I have met and become friends with many cancer patients. I have lost friends to the same disease that I have, at least for now, somehow managed to survive. It doesn’t make any sense. And, I am well aware of the fact that it could come back any day and simply strike me down. That is cancer: it comes, and it it always goes . . . it is just a matter of whether it takes you with it or not (and I mean that both literally and figuratively).

Last February I stood and watched a friend of mine cross the finish line of a half marathon. I remember how difficult it was for me (not even one year ago today) to simply stand there for 20 minutes waiting to see my friend cross the finish line. I was still so tired and weak. I remember hanging onto a chain link fence for support and wondering if I would make it through (kind of the way cancer treatment and recovery is like . . . hanging on and wondering if you will make it through). I promised myself last year that I would be crossing that same finish line myself some day.

So tomorrow I am buying a new pair of running shoes (compliments of my parents – their birthday present to me). I have ten weeks to get myself, and my new shoes, ready for a half marathon. I fully expect to walk a significant part (if not all) of this “run” but, I don’t care. I just want to get through the 13.1 miles and cross that finish line. Wish me luck 🙂

I am very thankful for this birthday. And, I am so incredibly thankful for my family and friends – without whom I would surely not be here in the way that I am.

Love and peace,

Lisa

 

Leaving Las Vegas

8 Aug
Vector image of the Las Vegas sign.

Three years ago I was on a road trip to, of all places, Las Vegas. I say “of all places” because I am not a gambler nor much of a drinker and the thought of spending a weekend in smoke-filled casinos has about as much appeal as getting a root canal. I have always been extremely allergic to cigarette smoke. And with cancer on both sides of my family, the smell of smoke has always made me anxious.

My girlfriends were persistent. “It will be fun, a girls weekend”.  They showed me pictures of the suite that we would share. It was beautiful (think of the movie “The Hangover”, cut the suite in half and get rid of the tiger and you have a pretty good picture of what we had for the weekend).

I had been feeling incredibly tired for months (I did not yet know I had cancer, but, my extreme tiredness was one of the unnoticed signs of the battle my body was waging against the cancer within). Suddenly the idea of hanging out for three days in a luxury suite while my girlfriends gambled and went to shows (or whatever it is that people do in Vegas) started to have some appeal. I just wanted to rest. I remember how tired I felt then and how much I just wanted to do absolutely nothing. Which, by the way, is so NOT me.

At the last-minute, one of my girlfriend’s sisters (MJ – a breast cancer survivor) was able to join us. We had never met. I drove. MJ sat in the front with me and my two girl friends sat in the back and slept most of the trip to Vegas. The drive gave me and MJ an opportunity to get to know each other.

A little distance into our trip, she began to share her breast cancer experience with me. There were details of how she was diagnosed, of chemotherapy, and a bi-lateral mastectomy. But in particular (probably because it was something she was currently dealing with) she discussed her breast reconstruction surgeries in quite a bit of detail. I remember thinking, wow, I could never go through that. I was amazed at all she had endured.

She told me how the surgeries went. She described how she was about to get “new nipples”, how tattooing would be used to create a new areola and skin from her groin area taken to create the nipples. It was a bit more than I was comfortable hearing. It was so personal, so detailed and we were complete strangers. At one point, she raised up her top to show me what had been done to date.

MJ’s story had quite an impact on me that day. Little did I know, the very drug that saved her life back in 2005 (Herceptin) would, in a matter of months, be coursing through my veins to do the same (I hope) magic.

Not since that road trip have I heard much in the way of truly frank discussions of breast reconstruction. It simply is not an easy topic. Although, MJ had no problem sharing her story with me, perhaps it was because we did not know each other. It becomes a different matter, I think, when it is our friends, our families our colleagues.

Chemobabe has recently taken on this topic in her blog. And another favorite blog of mine, Nancy’s Point. addresses wholeness after breast cancer (with or without reconstruction). And a few years ago, this post (by a blogger who is actually a high school classmate of mine) addresses sexuality after breast cancer reconstruction surgery in her blog: “Breast Cancer the Second Time Around”

So why is it so difficult to discuss?

Breast cancer has provided me a very interesting window into our society. I know sex sells. I know breasts sell, I know, I know, I KNOW! (And, there is a lot written about groups that use sexy names to sell awareness of the disease and to raise funds for research – something that is a whole other topic).

But, until you have had your breasts removed, and until you have been forced to deal with the pressures that be (everyone else’s expectations of what you should or should not do) you really can’t fully understand how much having breasts and being perceived as a woman are so deeply linked. And it goes way beyond sex. And perhaps it is why groups with names like “Save the Ta-tas” and “Feel Your Boobies” are sometimes seen as offensive to those of us that no longer have ta-tas to save or feel.

Initially I was not sure what I wanted to do reconstruction wise. I simply wanted to survive. The last thing I wanted to worry about was breast reconstruction while I was battling an aggressive form of breast cancer.

But, there were other issues I had to consider too. (As a business owner and an employer I felt the need to minimize my time out, time off from work would have broad implications. And, there were other concerns: how long would I have to sit out from playing music, and insurance issues). It was not an easy decision at all. But after a great deal of thought, I decided to have “immediate” breast reconstruction surgery (knowing full well there was nothing immediate about it).

I admit, I felt pressured to begin reconstruction “immediately”. I realize now that this was not perhaps the best route to go (multiple surgeries while going through immune suppressing treatment is not the safest route it turns out). I spent months on IV antibiotics due to infections at the surgical sites (daily nurse visits to my home, an IV pole in my living room . . . okay, I know you get it . . . cancer is not much fun). But, my point is that had I waited on the surgery (which was never presented to me as a real option) I probably would have avoided the multiple infections and loss of skin that occurred (sorry if that is too much information, but, that is what can happen: “morbidity” of your skin, especially radiated skin).

So, I could have waited. But, it is what it is and I prefer not to look backwards. But, there is no reason why someone else can’t perhaps make a better informed decision by hearing of my experience.

Incidentally, I had what is called a lat flap procedure. This was the only option for me. Oddly, I got a lot of grief over my decision to do the lat flap from women at a breast cancer support group. I believe they meant well, I know they did, but, I found it a little upsetting.

I had, after all, consulted with many surgeons, I did research, I am not stupid (at least I didn’t think of myself that way). So, since it was not the kind of support I needed at the time I simply stopped going to the group. I knew for me it was the best decision I could make at the time. Those of us faced with these kinds of choices do not go about it without a lot of thought. As a result, when we are questioned about our decisions – our very hard to make choices – it is frustrating and I suppose, a little insulting.

My wish is that for newly diagnosed women, facing a mastectomy or other breast altering surgery, lumpectomy etc, is that they are presented with all options (not having reconstruction, having it “immediately” and having reconstruction at a later date). And my second wish is for those facing these choices that they be given the time, un-pressured time, to make their decision. And above all, as Chemobabe points out, once the decision has been made . . . it would be nice to have it trusted, not challenged or questioned.

There simply is not a one-size-fits-all approach to reconstructive surgery (whether to have it all, when to have it or type) any more than there is a one-size-fits-all bra.

Thank you for visiting cancerland. We hope you enjoyed your stay.

18 Nov
Cover of "One Fish, Two Fish (Dr.Seuss Cl...

One Breast, Two Breast, Red Breast, New Breast . . .

I haven’t written in a while. I keep starting a blog post, even get quite a distance into it, but, then I stop, save it as a draft and put my laptop away. When I return to it the next day I am no longer “there” anymore and so I start over, writing about something else. I have nearly posted something on a number of topics in the past couple of weeks. But, I just can’t seem to put myself behind it long enough to get it done.

Lately, I either write because I feel particularly down, displaced by this cancer nonsense, and use writing as a vehicle to somehow transport me back to a better spot or I write because I want to share something really good.

I think the past several weeks I have had so many highs and lows and have so quickly felt tossed back and forth from one extreme to another that I can’t wrap my head around either place long enough to write about it. Friends are calling and emailing to see how I am doing: “You haven’t written in a while . . . are you okay?” etc.

I am tired. I am overwhelmed. I am happy. I am sad. I am grateful. I am angry. I am joyful. I am mad.

I am quick. I am strong. I am slow. I am weak. I am exhausted. I am invigorated. I am bereft. I NEED sleep.

Maybe I can turn the above into a Dr. Seuss book for cancer patients.

In a tree. In a boat. On a train . . .

I know . . . I could call it: One Breast, Two Breast, Red Breast, New Breast (you know, the Dr. Seuss book: One Fish, Two Fish, Red Fish Blue Fish). That would have to be the breast cancer-mastectomy-radiation-reconstruction version of the book. Or I could do a new version of “Oh the places you”ll go” . . . and call it: “Oh The Places You Will Never Want to Go”?

I am fierce . . . the hot-pink-now-faded t-shirt I wore to nearly every infusion for over a year.

I am 20 months into this cancer roller coaster and still I am not off the ride. It isn’t like there is a graduation day. No Pomp and Circumstance marks the end of my war. I don’t get a diploma that says “cured”. There isn’t a sign that says “Now Departing Cancerland”.

Instead, there are the daily reminders of both what I have been through and what I look forward to, what I have lost and what I have gained. Every time I get dressed and look to see if a scar shows through or whether a top still fits or does it need to be tossed. And, the difficulty even getting some clothes on and off because my arms don’t go all the way up over my head anymore (the radiated side is not cooperating at all – one of the things they don’t tell you is that when you go through radiation your pectoral muscle can shrink which can leave you with a frozen shoulder . . . back to physical therapy at $100 a week . . . )

I marvel at how far I have come, but, I am sobered by how far I still have to go. It is a very strange and surreal journey. And it is not over. I guess that is the most difficult part right now – navigating through this time – from cancerland to the rest of my life. I feel pain on a daily basis, but, it is better to keep moving than to lay in bed. I definitely feel like I have my wits about me again . . . chemo-brain be damned (my brain really does seem to function again . . . the way it used to . . . what a huge relief). And, I have been able to work out a few times at the level I would have before all of this began (I put in a pretty intense hour and a half at the gym just a few days ago). I AM making my way there . . . where ever there is . . .

I just wish there was a map.

Thursday . . .

21 Oct
Pastinaca

Parsnips - these are going into my stew 🙂

Well, I had two straight days without a headache. But, now it is back. Dang. It just wears me out. I am really getting tired of this whole thing. This roller coaster ride started 20 months ago. For the past 20 months, I have been in some kind of physical pain every day, it is just a matter of degree. I don’t like to focus on it. It is somehow harder now as I realize that there just simply is not some bright line date where it is “over”. I am still recovering from my last surgery, so I know I should not presume that this is how it is going to be . . . eventually I will be healed from the surgery and that will certainly account for some improvement. But, I am so sore all of the time, my bones ache and I am told that is likely from the chemotherapy. And it may not improve. So annoying. I am, was anyway, a very active person. Right now, just doing the simplest things wear me out. I went to the grocery store to get ingredients for a vegetable stew that I want to make. I found a slow cooker recipe for a root vegetable tagine – it looks very good. Anyway, by the time I got home from the grocery store, I was too tired and in too much pain to do anything.

I am sure my energy level and pain level (God, I hope so) will improve. It just has to as this is really not such a great way to live. I hate this so much, hate writing it, hate feeling it. I have not had a normal nights sleep since my first surgery back in August of 2009. I am hoping that with physical therapy (which I am supposed to be able to start in the next few weeks) that this will improve. Right now I can only sleep on my back. The trouble with that is that my arms do not lay flat, or, I guess it is my shoulders actually (in particular, my right shoulder) that does not lay flat when I am on my back. So, it is painful to lie down, but, obviously necessary. I try to prop my shoulders and arms up with a pillow so that laying on my back doesn’t force my shoulders back in a painful way. But, inevitably I move in the night and so I am never asleep for long.

In the scheme of things, this is nothing. Nothing compared to the months of chemo and radiation. But, somehow, this stuff is harder for me to take now . . . maybe it is because I expected things to be over with by now, maybe I expected to be better, feel better and to truly be able to get back to my life. I am having doubts about working full days. I want to, I need to . . . but, things like cleaning out my refrigerator are too physically taxing . . . clearing off my desk (which I so desperately need to do) is too physically demanding. I have to make choices throughout the day . . . do I do this or do I do that? Because I know that either one will leave me in need of having to go back to bed for a while. I am SO sick of my bed.

Well, I am sure things will get better. I am just getting a bit fed up and I am feeling pretty impatient I guess. Maybe that is a good thing. I don’t know.

Wish me luck 🙂

Oh, and here is the recipe for the Root Vegetable Tagine . . . I am going to add organic beets to this recipe . . . I will let you know how it turns out 🙂

Slow Cooker Root Vegetable Tagine

Ingredients

  • 1 pound parsnips, peeled and diced
  • 1 pound turnips, peeled and diced
  • 2 medium onions, chopped
  • 1 pound carrots, peeled and diced
  • 6 dried apricots, chopped
  • 4 pitted prunes, chopped
  • 1 teaspoon ground turmeric
  • 1 teaspoon ground cumin
  • 1/2 teaspoon ground ginger
  • 1/2 teaspoon ground cinnamon
  • 1/4 teaspoon ground cayenne pepper
  • 1 tablespoon dried parsley
  • 1 tablespoon dried cilantro
  • 1 (14 ounce) can vegetable broth

Directions

  1. In a slow cooker, toss together the parsnips, turnips, onions, carrots, apricots, and prunes. Season with turmeric, cumin, ginger, cinnamon, cayenne pepper, parsley, and cilantro. Pour in the vegetable broth.
  2. Cover, and cook 9 hours on Low.

Love and peace,

Lisa

Some pictures from this summer and last summer . . . what a difference a year makes :)

27 Aug

Me and my cousin Suzanne . . . two weeks ago at my nephew's 2nd birthday party

My parents, love this photo, they just celebrated their 53rd wedding anniversary!

Two weeks ago, celebrating my nephew's 2nd birthday!

Playing with my blues group a few weeks ago.

Playing with "Huge Blues" at Bistro 400, July 30, 2010

July 2009, almost done with chemo

Goofing around with my brother and my nephew, Bowers Museum, July 2009

Dana Point, a break from chemo to hear some music with my cousins, June 2009

I felt like crab . . . thank you David 🙂 July 2009

Dana Point concert last summer

Early on in chemo, last spring, sometime in April 2009 . . . My brother Steve shaved his head . . . awe 🙂