Tag Archives: mastectomy

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.

There is light at the end of the tunnel . . .

25 Jul
Crowded summertime beach in Avalon, Santa Cata...

Avalon

It is funny how sometimes when you are forced (or force yourself) to do something difficult, it becomes easier.

I have to study for an upcoming professional exam. I don’t mind studying, I actually have always enjoyed it. But, since cancer my body is not the same. Things that were once quite easy can sometimes be very difficult. One of those things is sitting in the same position for a long time . . . something you kind of need to be able to do to study (at least I need to do it that way). Well, I started studying in short time frames and built up to longer time frames and now, while I can’t say I am back to my normal study stamina, I am definitely in a far better position than I was even just a few weeks ago.

So, I have been forcing myself to sit and study for as long as I can without taking a break. Then, when I absolutely have to, I take a break and return to it. My body hurts, my legs and arms go numb and it is uncomfortable and irritating. But, it is what it is. AND, I am quite happy to report that what I can do today is vastly more than what I could accomplish even just a few weeks ago. It really has in its own way (my studying) been a type of physical therapy.

I can only imagine how much better I will be after a few more weeks and then a few more weeks and so on.

The most challenging thing for me post cancer has been the feeling of losing my old self. I don’t mean losing my breasts and having my old breasts replaced with scarred up “reconstructed” breasts. Nope. I chose a bilateral mastectomy. I had cancer in one breast and chose to have both breasts removed. That choice made me feel empowered, not depressed, strong, not weak . . . and in some small way in control.

My point is that I am not so bothered by the scars on my body. It is the physical limitations (pain, exhaustion, lack of energy) that bother me the most. And it is those things that make me feel less like myself. (And, a little pissed).

Nowadays, post cancer, I often find myself having to choose which things to do in a given day, a given week, etc. simply because I don’t have enough energy or pain free time to do what I normally would do. And, I have found that very frustrating.

For example, recently I spent the day with friends on Catalina Island. It was a wonderful day. The weather was perfect and the company even better. But, knowing that I had this day trip planned meant to me that I had to figure out how much I could or could not do the preceding day and week because if I did too much, I would then be too tired for Catalina. It is like having a bank account without enough funds to meet your expenditures. I am in the red physically.

So it goes . . . my post cancer existence. And just so I am clear – I don’t mean not partying until 2:00 am the night before (that isn’t really my thing anyway). I mean not “over-extending myself” the day before – which can simply mean – letting the laundry go another day, and simply taking it really easy. On this occasion, it meant turning down a last minute dinner invitation. I couldn’t just say, “hey, I would love to come, but, I have a big day tomorrow and doing both will be too much for me” . . . or . . . could I? Instead I said, “I would love to, but, I already have plans” (yeah, plans to lie in bed for the rest of the night . . . argh).

It is a balancing act and I am getting better at it . . . better at knowing my limits and better at pushing my limits too.

This studying has been a wonderful thing because it has definitely improved my physical stamina for concentrated work (something that makes me very, very happy).

Prior to cancer I was working on a new book. I had to drop work on it during chemo because my brain was, well, fried. And looking back now on some of the blog posts I wrote during those days, I am certain that it was a wise choice to postpone finishing the book (chemobrain is real, at least it was for me).

But, after the past several weeks of studying, I know that now I could sit down and write for hours in a day. And that, my friends, is a huge, huge deal because it means that I am that much closer to getting my life back.

I know I will still have to make choices between which things I can do in a given day or week. But, the feeling I have had of being sidetracked by this disease is beginning to fade. I am dismissing it every day that I force myself to sit through the discomfort and study. It is a good feeling. Oh, and a day trip to Catalina Island with great friends is a pretty good way to leave some of the leftover pains from cancer behind me too.

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.

This time last year . . .

4 Aug

This time last year I was just about to have my first surgery, a bi-lateral mastectomy. It seems so, so long ago. And, somehow, at the same time it is like it was yesterday. I can so vividly remember taking that last shower before surgery, washing my body with a special blue antiseptic soap that my surgeon asked me to use to help prevent infection. I will never forget that last shower, watching the bright blue soap run down my body and wash down the drain and thinking “this is the last time I will shower in this body.” I remember sobbing uncontrollably in the shower and even thinking of it now brings those tears right back. And I remember never feeling more alone in my life.

I remember knowing ahead of time that I would cry in the shower. Weird. I played it through my head before hand, like it was part of a movie script or something. But, as much as I had imagined it . . . when I took that shower . . . I was completely overcome with feelings I had not imagined, feelings of grief and sorrow and yes, some self pity and fear, but, mostly, just sorrow. I had imagined crying, but, I had not imagined how I would feel.

When I picture that time I am overcome again . . . here I am typing and crying . . . it has a way of sneaking up on you sometimes. 🙂 Usually, it is when I am alone. But, sometimes it will hit me when I am not alone, maybe I am a passenger in a car – not alone – yet, alone in my thoughts for a bit . . . and I am struck with it and then the trick is to disguise it in some way.

I guess it is good to cry about it once in a while. After all, I think there has just been a numbness about it for this past year. And, there is/was/is the need to just be okay for everyone. That has been a big part of being numb, not letting myself go “there” . . . where ever there is . . .

I guess I could call it the big fake out . . . 🙂 But, it is that fake out that has probably made it possible for me to get to where I am . . . so . . . that is good then. Still, it sneaks up on me sometimes.

I am okay though. But, it is hard now as I approach this next surgery. If I knew then what I know now, I am not sure I would be doing this. I guess it will all turn out. But, I am still not used to this new body and I wonder if I every really will be. I worry about taking the muscle out the right side of my back . . . not that I have a choice in the matter. But, I worry about it, about losing more feeling than I have already lost. It is surreal to willingly go through these things . . . for what, I wonder?

No one ever proposes the idea that maybe you don’t want to have reconstruction. Everyone, every doctor, surgeon etc., just assumes that it is what you, and what all women, want . . . to have replacement breasts. I just don’t know about that. If I could do it without losing physical agility, strength, then I probably would have no hesitation. But, I have not regained my pre-surgery use of my arms or strength.

I hear it takes a year or more for the tightness from this kind of surgery to go away. So, I guess I need to give it time. But, patience has not been one of my virtues lately. It was good, I think, to be very impatient with cancer. But, maybe not so good to be so impatient with this part of things.

Well, enough complaining. I have to get back to work!

Love and peace,

Lisa

So tired . . . of all of this . . .

7 Jun

Hello All,

I am now three weeks out from surgery. Kind of hard to believe. I am so grateful to be three weeks out, and not the first week or the second (which were their own particular kind of hell). I am definitely getting better – the most marked difference is in the pain department. While I am not pain-free, it is a level I can tolerate.

Today I will see my surgeon for the first time in a few weeks (she was on vacation last week – so I saw her partner instead – I like him a lot, wish he could be my surgeon – appreciate that he gives out straight answers and doesn’t get defensive or feel the need to apologize for what he is about to say – he’s up front, direct – – what I would give to have that from my surgeon, oh well, I digress). So i see my surgeon today. I believe she will take out the one remaining drain (after surgeries sometimes drains are put in to help your body to drain blood, fluid and tissue away from the surgical site – I know, kind of gross, but, that is what it is). These drains help your body deal with that stuff so that your body doesn’t have to absorb it.

Anyway, I had just two drains with this surgery (I had expected more, since there were four incision sites. One drain was removed last week and the last drain may come out today. I should probably leave these details (and others I will spare you from now) for a “for cancer patients” blog. I would have really appreciated knowing more about all of this stuff, (how you have to maintain it as a patient, etc) before my first surgery. Instead, you get a one page handout that shows a line drawing of something called a “Jackson Pratt” drain. Not very helpful – doesn’t prepare you at all.

So, I am very tired. This weekend was a long one for me. My Mom, who is getting better, has had some kind of flu bug (she has promised me she is going to call her doctor today – she’s been quite stubborn about getting over this on her own). Anyway, as a result, I haven’t allowed my Mom or my Dad to come over for several days now. Mainly, i want my Mom to get rest (something she does not get here as she is always doing something for me). But, also, I should not risk being around anyone who is sick. And, even though my Dad is not sick, he has been around her, so he could potentially give me what my Mom has. I doubt it. But, I have to say, it is putting some pressure on my Mom to actually go into the doctor (since I keep telling her that she can not come see me). I am not trying to be mean, I am just concerned about her – I want her to get checked out by the doctor and I also do need to be pretty cautious myself.

But, since they have not been here for several days I got low on groceries (I can’t yet drive to the store, so my parents usually go for me or take me there). Anyway, a friend of mine took me last week and now I need to go again. I have a doctor’s appointment today and should be able to make a stop on the way home to pick up some groceries.

I am just so incredibly tired of having to rely on everyone for so much. I had no idea going into this thing (not to suggest that I had a choice of going into it or not :)) that it would be this long a period of time – needing to rely on people for so much. It is unimaginable. And, the thing is I’ll have a little stretch where I am pretty good and can fend for myself, then surgery and I am right back to being useless.

I am, however, getting better. I still can’t drive, probably at least a few weeks more of that – very frustrating. Although, I am so physically tired and my arms are still so limited I would not want to drive right now. But, you understand, I just wish that I could drive, and, I especially wish that I felt well enough to drive.

I am getting better, just really tired of this whole thing, so worn out from the past 15 months and really hoping to get a break from all of this sometime soon. I know I still have the next surgery (same one that I just had) ahead of me, which is fairly major. But, I really hope to feel well in between this surgery and the next. And, then, after the next surgery I just pray that this will all be behind me. No more cancer, no more surgeries, no more feeling like this. I want my life back so badly. And, I hate to admit it, but, I can understand why people stop treatment because at some point your quality of life is just not there anymore and you can’t do it anymore. So I pray that I will be one of the lucky ones and that I will be clear of cancer.

Once I have the second surgery I will be able to have a brain MRI (something my oncologist wanted me to have last month – but, I couldn’t because there is metal in the expanders in my chest). So, after I have the second surgery (one expander was taken out in the surgery I had three weeks ago and replaced with an implant) I will no longer have any metal in my chest and so i can proceed with the brain MRI. That is when I will know with more certainty about whether I am cancer free. So there is some pressure to have that second surgery as soon as possible in order to get the brain MRI done. But, I think I have to wait at least 3 months between the surgery I just had and the next one. I will find out more about that when I meet with my surgeon today.

Well, what a ramble this has been.

Please continue to keep me in your prayers, I need it and I greatly appreciate it.

Much love,

Lisa

back on pain meds

3 Sep

Well, I don’t know if it was skipping the pain meds for the day on Tuesday (which my surgeon approved me to do) or what, but, I was in so much pain on ‘Tuesday night I thought that I would not make it through it. Thank God for my dear friend who came to the rescue and got me back on my pain meds and kept me on them throughout the night and day (waking me up at 2 am to take a pill etc.)

Once there is that much pain I really can not think straight or take care of myself. I don’t know. I was told that the surgery and recovery from surgery would be so much easier than chemo. But, that has not been my experience. I presume it has something to do with the weakened state you are in post chemo and that having surgry right after chemo makes it a bit slower recovery time. But, all I know is that I thought I would be a lot further along by now. It’s a struggle right now to stay awake to write this post and you can be sure that I will be going rt back to bed as soon as I am done.

I have an appointment with my reconstruction surgeon today (I see her every week right now). She plans on “expanding” me today (please see prior posts for what this is, I am way too tired to explain it right now). Basically she will be adding saline to the expanders that were put in under my pectoral muscles during surgery. After she has expanded me to a size that I like then she will be able to exchange the expanders for silicon implants. It is a process. But, the very exciting part about it is that I will have a chest (even already have one, but just not a whole lot until she does more expansion – the first of which is today). It is so amazing really. There is – so far no detectable scarring the way everything is healing. Unbelievable.

But, all of that stuff above is really kind of not important to me. I mean, sure on some level it is, of course – to be able to come out of this with natural looking and actually beautiful breasts (so my reconstruction surgeon brags to me every time I see her . . .  ” You have great skin, I am so excited to be doing your reconstruction”.  Yeah, raw, boo . . . it’s all great, but I am just soooo tired and really all I care about is surviving. You know what I would like to have one of my doctors bragging to me about – is how I am going to survive this no problem – – how when all of this surgery crap is over with and treatment, that I am going to be 100% fine. That is what I want an oncologist to brag to me about! I have to say that the pain has definitely affected my overall mood – – the pain has been depressing me quite a bit. So hopefully the pain will get under control pretty soon so I can start getting back into things a bit more.

Well, I am going to take a nap and gear up for my appointment with my surgeon – hopefully she will still think that everything looks good and hopefully the expansion won’t hurt too much.

Oh wait a minute, I left out the most important thing! I have an appointment with Dr. Hurvitz, the breast cancer surgical oncologist specialist up at UCLA on September 11. I am a bit nervous, but I am mostly thrilled to be able to see her as she is so good.

Okay, nap time.

Please continue to keep me in your prayers.

Love,

Lisa

Good news . . .

1 Sep

Good news, I have an appointment with the specialist up at UCLA in about two weeks. I wish it were sooner, but, she is out of town all of next week. But, it is not like I will be doing anything differently prior to meeting with her anyway. I am very excited to meet with her as she will definitely be able to assess my situation and give me a plan that I can believe in and trust.

I spoke with my surgeon yesterday and she said that a little typing is okay, just stop if it hurts. Well, it already hurts a little, so this will he kind of short.

I spent the entire day in bed yesterday – no t.v., no movies, just resting (mostly slept in a quiet, dark room).

My only outing was at the end  of the day – a friend of mine took me to a hair salon down the street from my house so I could dye my hair; I like  it (what little hair I do have), the color is sort of a strawberry blond. It beats the white hair that was coming in (which my doc said was temporary, still, it was getting old). One advantage of having hair that is only about a 1/2 or 1/4 inch long is that it does not take long to dye. After chemo it is typical for your hair color to change and to come back in curly (assuming you have straight hair to begin with it). I also supposedly comes back in thicker. My hair is growing pretty fast. But, it started coming in white, then dark so now (before I dyed my hair) it was kind of a gray color overall. My docs say eventually I will get my own hair color back. We shall see. Until then, there is hair dye 🙂

I am getting my bike back tomorrow! Woo-hoo! It is not much of a bike (I had a really nice one, but it was stolen last year). But, it is the only bike I have right now and it fits me (not too big etc.). So, I am really  glad to be getting it back. I probably won’t be riding it right away, but at least I have it back and so when I am up to it, I will be able to go for a spin. I have been trying to get this bike back for I think over tw0 months now. Anyway, enough said on that, I am glad to have it back today!

Well, I am sure there is more to say, but I am just too tired,

I am doing okay, still very tired and in some pain. But, all in all, I am doing better. I plan on another day of rest today. My surgeon says to expect 8 weeks for a “full recovery” from the surgery. If that is the case, then I am nearly halfway there since it has now been three weeks and four days!

Please continue to keep me in our prayers,

Lisa