Tag Archives: mastectomy recovery

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

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.

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

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

Gathering up some energy . . .

1 Sep

So, I decided not to take a pain pill this afternoon . . . we shall see how that goes. But, I really am tired of being tired and I think that the pain medication is probably contributing to my sleepiness. I can’t imagine getting addicted to this stuff. I realize that people do, but, I just don’t get it. It’s not like you feel good taking it. You just feel out of it and, the pain does seem to go away for a while. But, it’s not like you take the drug and you are flying high and can’t wait to take another. Maybe that’s not what it is about for people who do get addicted to pain medication anyway. I wouldn’t know. All I know is that the sooner I can be off of this stuff and resume my normal life the better.

I can’t drive until I stop taking it (not a car, not a bike). And, I’ll bet I can’t even operate heavy machinery while I am on it . . . do you see the the limitations I am experiencing?

My main problem with it is the sleepiness – assuming that is what the sleepiness is in fact from. I have actually fallen asleep while talking on the phone (makes me a little concerned about calling back prospective clients).

A professor from UC Irvine’s new law school called the other day expressing some interest in one of my books. This is pretty exciting as I really want to get into UCI and had planned on marketing to them this past Spring for their Fall starting semester. But, cancer kind of got in the way with that. Anyway, I guess this professor saw our books at a local law bookstore (the only one in Orange County) and she wants to make the Torts book (that is the subject she teaches) available to her students. So, that is encouraging. We sell our books at UC Hastings, but, it would be great to get into a local law school bookstore as that would translate to more bar students locally.

Anyway, I have been afraid to cal her back for fear I will fall asleep mid sentence. I will call back soon, I just have to make certain that I am awake enough first.

Let’s see, no real other updates. Just impatiently waiting to be recovered from surgery. I am very bored (probably a good sign as last week I was in too much pain to be bored).

I can’t wait to see the specialist up at UCLA so I can find out more about how I really am doing. I think well. But, Dr. Hurvitz is the oncologist I really trust (she is the one up at UCLA). Plus, I just trust UCLA in general. They developed Herceptin and have treated far more women with my type of cancer I think than anywhere else. So, I feel much more confident in their abilities and knowledge.

My main complaint right now is the heat. I wish it would cool way down. It is pretty tough for me to be outside except in the early am or after dark. So please say some prayers for me and for the weather to cool down a bit 🙂

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