Shaken, Not Stirred: Where I Talk About My Boobs, Again

(WARNING: HIGHLY PERSONAL AND FRANKLY DESCRIPTIVE EXPLORATION OF MY BOOBS THEN AND NOW AHEAD.)

Many people mark the end of my cancer journey by the end of my chemo treatments. Not so. The end of this walk for me is when I get my boobs back. Sort of. Because I’m never going to really get MY BOOBS BACK, but I’m praying for a fair simulation at least.

When all of this started, I wasn’t supposed to have a mastectomy, much less a double. Just a simple lumpectomy followed by months of small radiation treatments. If you’ve been following me, you know that many things changed along the way and my worst fears were realized when I was told I needed a radical mastectomy of my right breast. I then opted for the removal of my left breast because:

  1. With the multi-focal nature of my cancer and the difficulty we found in trying to diagnose the extent of my tumors (three surgeries–no reliable scans or tests beforehand) I never wanted to again question my mammograms, MRIs, biopsies and more should a problem arise in the left breast.
  2. Because of my former hefty, Playboy sized-boobies, removing only one would have created a near-impossible reconstruction task. By removing the other, I have a fighting shot at symmetry and balance, which is important to me.

I’ve said that from the start of knowing I’d need a chest castration (and YES, I do feel this way), that my only solace was knowing that I could end up with Perky C Cups, for the first time since I was 11.

Not my boobs. But they could have been.

If you remember some of what I’ve already shared, when I had the double mastectomy, we were not yet sure what kind of reconstruction I would have, because it was so sudden that I did not have time to finish my research and consultations with the doctors. So to give me the most options, my surgeon “installed” expanders–two pillow-like pockets that were placed behind my pectoral muscles. The purpose of the expanders is to slowly fill them with water to “expand” the skin they reside under until you get to the desired cup size. Then, the expanders are replaced with silicon implants. As the skin is already stretched from this slow process of increasing the water inside the expanders, the transition to implants is, ahem, seamless.

So I left the hospital with those expanders and several drains. But I had gone into the hospital with an active breast infection from the previous surgery. That infection, while being held at bay with powerful antibiotics, really never went away and three weeks after my mastectomy, I landed back in emergency surgery to remove the expanders. That was when I was at my lowest and sickest in all of this, and it’s an episode in my life I never want to relive. I was in so much pain I just wanted it to end, and I was almost delusional at that point, not realizing how much pain I was in. You hear about out-of-body experiences and this was mine, and not a good one.

But by that time I had decided that I wanted to do a very complicated reconstruction procedure called the DIEP Flap. Because I was going this route, I no longer needed the expanders, which is good because my surgeon, Dr. H, was now worried that I would never have fully been able to accept silicon implants.

The DIEP Flap uses fat from my abdomen to create new breasts. To do this, microscopic arteries need to be re-routed to my chest area to provide blood flow to my new boobs. It’s very complicated and definitely a specialty surgery, but the benefits are several.

  1. I would be using my own flesh to create my new boobs.
  2. There would be blood flow to the boobs, which means they would be an organic part of me. They would increase and decrease with my body’s weight changes, being more “natural.”
  3. I would be getting a tummy tuck (which I really don’t care about) at the same time since that’s where the fat comes from.

I really like the idea of NOT having something foreign in my body. To do this surgery, I face 2-4 days in the ICU, because the potential problems occurring from this surgery are so specific and require careful nurse monitoring, so they keep you there. Then there would be another outpatient surgery to “tweak” the boobs, to get them right. My understanding is that the boobs are not the issue. It’s the tummy work and artery re-routing that has to be carefully watched.

Had I chosen implants, that would be over several surgeries to get it all right, but none of them would be major. But I would always have to be vigilant about my new implant boobs. Silicon implants are not designed to be forever, one-time things. They have to be replaced over the years. And they have to be checked for leakage and other issues. I didn’t want that headache.

I don’t have the courage to take a picture of what I look like right now, but I do have the words to describe it. I have to first say that when you go through major, body-changing surgery like I have, and like so many other women have, you start to feel disconnected from your body. I often say that this is NOT my body. Between the chemo and the surgeries, it doesn’t feel like my body. It doesn’t respond like my body. It’s just not me. Reconstruction is about getting back some of me. I will never have all of me back; too many nerves were removed in this process. But I can at least enjoy the illusion of me, if it’s done right. I’m vain enough to want to have a nice, healthy, pretty body. I want my skinny clothes to fit again. I want to dress up and feel like a woman. Right now I accept that I don’t. I know it’s temporary, and the fact that my husband still loves me and wants me is what makes this bearable. But the hope of reconstruction is that I will again feel like me. Modified, but still me.

I have several friends and acquaintances who have consciously chosen for varied and personal reasons NOT to reconstruct after mastectomies. I honor and respect them for “living flat,” as they call it. That’s not me. I love the shape of my woman body, the curves and contours. I want as much of it back as possible, for me and no one else. For that I’m willing to be patient and to go through the pain and expense of reconstruction.

When I look at myself in the mirror topless these days, what I see is a blasted but neatly healing minefield where my boobs used to be. To preserve as much skin as possible for use later, my surgeon created skin pockets/flaps that were stitched in place under my armpits. They are not huge, but they are definitely noticeable when I’m undressed or wearing something tight, like I have football padding under my arms. The front of me looks nipped and tucked, with stitching lines where everything was sewn closed. Of course I have no nipples anymore. When the time comes, they will be “remade” by pulling up and sewing the flesh into little nips. Then they will likely be tattooed to give them color. (I kid you not.) The pictures I’ve seen show a good close reproduction of actual nipples and I can live with that. But I will never have feeling in them like the real things.

The sewn part of my chest is bumpy and I can feel my ribs just under the scars. Everything was sewn adequately to allow me to heal and get through chemo. We knew we were revisiting this whole area, so it’s neat, but not perfect nor fully symmetrical. I’m a little concave actually, and I’ve noticed that I walk differently. I have to consciously stand up straight, but without my boobs as a counterbalance, it feels different.

I did get prosthetic boobs several months ago. These are silicon inserts, fairly heavy, about a large B cup, that I can wear with a special bra. Wearing them is not about vanity, in this case. It’s about balance and weight. They are much smaller than what I sported before, but they do add some stuff for my clothing. Remember that our clothes are designed for boobs, even small ones, and the absence makes the lines of our clothes not hang right. In my case, since I don’t want to buy a new wardrobe yet (Be afraid, Stephen. Be very afraid!), I need to make my current closet work, especially my work clothes, which are more tailored. My prosthetics make this a little easier to do. And they help me stand straighter.

I’ve been very lucky in that while I certainly needed to lose a few pounds when all of this started, I had been working out regularly by August, and I was/am very flexible. Often, when we have mastectomies, there are more after-effects from the removal of our lymph nodes than the main part of the surgery. In this case, all of my nodes were removed from my right side, and tested (they came back clear which is the BEST possible news for breast cancer!). Just the removal and the tucking and stitching of all of the flesh in that area can cause us to not be able to use our arms freely. Range of motion is limited because you’ve taken away a lot of the skin that stretches with you. I’ve retained all of my range of motion, either because I was in good shape or my surgeon is that good. (Probably both.)

Because the lymph nodes help regulate the fluids in the body, I will forever more have to be careful about lymphedema, the swelling of the lymphatic system due to the removal of my nodes. I can no longer do anything which could trigger this condition, including having blood pressure taken on my right arm and having blood taken from my right arm. I have to wear compression sleeves anytime it’s needed and especially when traveling by plane (air pressure is the enemy here), and some other things I can’t remember right now. What a pain in my ass arm! But so far, it’s been workable.

Okay, so here’s the game changer in all of this. I’m open about the years of infertility we experienced to get Samantha. I wrote about it in a weekly column when I was still a reporter at the Ventura County Star back in 2000. Sam was 13 years in the making, and we lost nine babies before having her. All of our issues were on my end. I’d had a badly handled infection when I was 17 and the resulting scar tissue in my uterus closed my fallopian tubes. In response, I’ve had many, repeat many, surgeries to correct the tubes, remove tubal pregnancies, try to get pregnant and more. So many surgeries over so many years that my doctor and I can’t even put a hard number on them. But I guess between 20-24, most of them laparoscopies, but a few full-on laparotomies also, including my emergency C-section for Sam.

When my “Flap” surgeon heard this, he immediately stopped all conversation and wanted to know more about all of that abdominal slicing and dicing. Dr. W said that with all of that activity on my tummy, the likelihood of having damaged arteries is high. He called my infertility doctor, who has been with me for 28 years now, and was told laughingly that Dr. Jerry has so much written history on me, he doesn’t even have it all anymore. But that he would guess that yes, the arteries were damaged at some point in my quest for motherhood.

When I’m done with chemo, I will need to go in for an abdominal MRI. That will either completely rule out doing the Flap surgery, or it will send me under the knife with the potential for not being able to complete the surgery. The alternative is going back to the expanders and then to implants. Dr. W is not as concerned about my rejecting implants and expanders again. He believes it’s still an option, that the problems I had with them were specific to the infection and those surrounding circumstances.

For my part, I’m trying not to be discouraged here, but I’ll admit it’s really hard. And ironic.

After defeating so many years of infertility and having our precious daughter, I once again face the Spector of My Worst Battles. That’s right. For all that I’ve gone through with this breast cancer shit, I still believe that infertility was harder. Losing our babies, over and over, was the hardest thing I’ve ever gone through. This now is just about losing my boobs and curing cancer. I just don’t feel the same heartbreak as I do and did for my babies.

Nothing matters more in our lives than her. Nothing.

But I still want my boobs back. So, we’ll see. I’m very good about compartmentalizing my life and being patient. Right now, it’s all about chemo. Then it will be scan time. And then it will be decision and surgery time. I can do this.

Shaken, Not Stirred: Cancer Still Sucks

Me and Samantha recently.

Me and Samantha recently.

This might be a big rant, but it’s part of that full disclosure thing that I’ve been trying to do.

My new chemo, which started in January, is Taxol. Taxol IS more tolerable, as I was told over and over, but I really like it less than the A/C combo and this is why.

A/C was once every other week for eight weeks total. The pattern was receive drugs Day 1. Days 2-4 were yucky days, with nausea, headaches, body aches and just general blech (that’s a medical term if you didn’t know). But it would get noticeably better each day. By the time we hit Day 5, I was usually fully functioning and able to continue for the remaining 9 days. So the cycle was built with a body break.

Taxol is Every. Single. Damn. Week.

Day 1 (Mondays) I get chemo. I receive fluids, Benadryl, steroids and Taxol. Sometimes something else for heartburn. Each of these is given through my port by IV. Often, my port is not behaving. We have to first draw blood from my port to test my white count and lots of other things before we start the chemo. My port likes to clog. A lot. So we shoot a little Heparin into it to loosen it up. (Heparin is a blood thinner.) Then I am usually asked to stand up, jump a little, move my head in circles (because the port is in my neck) and this is the point in the exercise where I start looking for the hidden camera. Yep. It’s pretty funny watching me contort in order to bleed. Nurse M. has been renamed the Port Whisperer, because she can usually make it obey. And it will. Eventually. But not before Richard Simmons takes over my body and makes me sweat.

Once the blood is received, we move on to the drips. The Benadryl pretty much knocks me flat. I don’t always sleep, and that’s bad, because I’m usually experiencing legs shakes in place of snores. The chemo takes about 3 hours and there’s no way I’m at work after, so it’s another sick day from work. I get home and sleep for the hours that follow. And then we get to night of Day 1. At that point I’m pretty much awake the rest of the night. And that’s because of the steroids. Steroids are evil. I’m told the steroids are what help prevent allergic reactions to the Taxol, which can be bad, very bad. But the trade off is that for several days I don’t sleep (which causes its own set of problems), I’m flushed all the time, I’m very hot, my brains are scrambled, I can’t hold a thought well, and more.

It eases a little every day, but then by Day 3 or 4 I’m feeling the Taxol. I get low-grade nausea–never chucking, just feeling like nothing is settled in my tummy–and other GI issues that I decline to put into words. For that one day I’m just not feeling good and I’m usually very emotional and can’t hold back the tears, even though there’s no solid reason for my angst. By the weekend I’m feeling pretty normal, but that gives me just two days of break before the next dose. I have eight more weeks of this. Eight. More. Weeks.

When I start feeling sorry for myself, and it’s usually either the day I go in for the chemo or the day it hits me so badly, I remember the many, many people I see in my chemo center who are struggling way more than I am. There are men and women who come in barely walking or in wheelchairs because they are so weak. Their coloring is yellow and their lives are marked by the schedule of scans to find out if their tumors are shrinking or not. They talk about the constant vomiting and exhaustion, about not being able to work or live a semi-normal life. Some of them seem to be alone while they go through this, and that breaks my heart the most. No one should experience a life-threatening illness alone. No one. It makes me think about what I can do when I’m done with this to help others who don’t have the human resources around them for support. I’m mulling it over big time because I can’t picture going through any part of this cancer journey alone.

I am so blessed with amazing family and friends who walk with me over and over in ways big and small. I have never been alone in any of this. I treasure the fact that I can mostly work, that I can take my kid to school and attend her cheer games. I can write and sew and clean my house (stop laughing Stephen!) and cook. I’m functioning close to normal. I look mostly normal, except for the complete absence of hair, which still freaks me out. No eyelashes. No eyebrows. No bikini line. It’s freaky, totally freaky! I’ve gotten used to my plethora of head scarves and beanies. They work well and I’m never without one. Stephen jokingly asked this morning, as we looked at the rainy deluge outside, if I had a waterproof one? Smart ass! And no, I don’t. That’s what hoods are for, I said.

I also know that I won’t have any scans when this is over. As I’ve explained before, this aggresive chemo is really my insurance policy. Because of the multi-focal nature of my cancer (many, many small tumors) the worry is that something might have escaped and that it would be too small to detect, until it latched on somewhere and grew. So the chemo is designed to wipe out all potential harm floating around in my body. There’s nothing to track. Once we’re done, we’re done.

Me sick last week at chemo. They still gave me fluids even though they didn't do the chemo.

Me sick last week at chemo. They still gave me fluids even though they didn’t do the chemo.

I got sick last week. It could be a flu, or just be that really, really nasty upper respiratory virus circulating very efficiently through our town and my office, but it was bad. With a depleted immune system, I was laid flat for five days. It’s two weeks later and I’m still hacking and not feeling any let up yet. In contrast, I gave it to my husband and he was better in five days. Samantha too. That’s the difference between having an immune system and not. So I get to be extra careful these days. The result of this illness was missing one week of chemo. So the regimen was extended by one week. That’s nerve-wracking. When you’re battling a life-threatening illness, you live for your treatments. You know your treatments are what potentially guarantee your future existence. To miss one or two allows doubt and fear to creep into the scenario. Luckily I was able to continue with chemo this week and Dr. S was not phased at all by the missed week.

Life has definitely settled into a pattern and it’s very livable, if sometimes unpleasant. I know I”ll get through this phase without any hiccups. And then it’s onto reconstruction. That’s my next post. Reconstruction is becoming a bigger and bigger deal here. But I’ll save that for a couple of days.

My favorite baby picture of my Samantha.

My favorite baby picture of my Samantha.

By the way, my baby turns 16 on Sunday. I can’t express how freaky it is to have a 16-year-old! I feel like I’m still 16 myself many days. And she’s had to grow up so fast this year with all of my crap. I feel like she’s lost some of her innocence and faith in the world, watching me fearfully so many times. Samantha has definitely paid the highest price in stress and worry through this. Stephen of course, but we both have the gift of maturity and experience that allows us the faith to know that this will be okay. Sam doesn’t believe it. She’s always worried about the next emergency. I crave the day she will relax and know that I’m not going anywhere. Because I’m not. At least not from this.

Shaken, Not Stirred: I Am Blessed, But Still Nauseous

I can’t believe I haven’t written in more than a month. True, the holidays were here and that consumed what very little extra bandwidth I possessed to be anything other than The Cancer Patient. Though it was a complete challenge many days, I did survive the holidays and the sometimes endless requirements (decorating, socializing, presents, worship) because it’s important to me that normal be our norm, as much as is possible.

My hair is completely gone. What we shaved down on Thanksgiving day (about 1/4″ of buzz) dropped out within a week. I stepped into the shower, made a pretense of shampooing my head, and as my hands passed over my skull, hair sloughed off into my palms like it was never attached. It was sad, and scary and dramatic, and Steve and Samantha are my saints for putting up with my angst during those couple of weeks.

I was right, by the way. One of the biggest concerns I had with losing my hair was that with an absence of hair, and the inability to make peace with a wig, I would stand out in a way that makes people wonder what’s wrong with me. I bought a small ton of beanies in different colors to coordinate with my clothes and they are comfortable and kinda cute, but there is no doubt that I have no hair beneath them.

Here’s what I’ve discovered about being hair-free:
1. My bare skull is cold, cold, cold. Except when I’m having my hourly hot flash. (Because the chemo I’m given puts me into early menopause. Hence the hot flashes and other unpleasantries.)
2. I would never, repeat never, take off and expose my bare head in public. It feels incredibly intimate and vulnerable to me, like being completely naked in a crowd. So my new biggest fear is that a strong wind will rip off my beanie in public and I’ll be naked for all to see. I carry an extra with me just in case.

So, what about the wig? Yep. The Wig. I know many women who happily wore a wig throughout their treatments. I envy them. I bought a great wig from a great shop, had it styled before I left there, came home and could not make it work. I’m one of these women who uses cosmetics not to fake or hide something on my appearance, but to enhance what’s there. The wig makes me feel artificial. It’s not real, so it’s not me. I mostly bought it for the few times I will be in front of an audience for work-related things, thinking that it would make me more comfortable and therefore make me a better presenter. But the fact is that most of the time, when I’m wearing my beanies, I completely forget I have them on. I just live my life. And it’s the same with public events.

I have to admit to feeling a little pride in owning my head. Having cancer is not my fault. It’s not a point of shame or guilt. Losing my hair is part of what I have to do to get completely healthy and while I choose not to show it to the world, I’m not embarrassed by it. (I should say the same thing about gaining weight from the steroids, but I am embarrassed by that.)

This week, I started a new chemo drug. My protocol is 4 treatments of AC every other week for 8 weeks total, and then 12 treatments of Taxol, once a week for 12 weeks. I’m on week 1 of Taxol. I hate it. The AC was hard enough. For a few days it was really hard. My last treatment on Dec. 27 knocked me on my ass for five days. I was nauseous all of the time and dizzy and grateful I didn’t have to work. But I knew it was only four treatments, with a week’s rest in-between.

When I finished the last one, I begged my doctor to give me an extra week before starting the Taxol. He said it wouldn’t be a problem. That week was so important to me. I was starting to feel like I was going to quit this whole thing, that I couldn’t take one more jab and stab. I started to feel normal again (because on chemo you’re really not ever normal until you’ve been off the drips for a few weeks is what I’m finding out), and girded my chemo port for the next assault.

So I love my nurses. I can’t say enough kind things about them. Ms. G. is too funny though. Her favorite descriptor for how Taxol would be was “tolerable.” Okay, so what the hell does “tolerable” mean? I couldn’t get her to give it to me straight. Me, a trained inquisitor, could not get her to budge from “tolerable.” I was getting worried. So I dug up a friend who is also an oncology nurse and asked her for the exact translation of “tolerable.” Her answer was that there may be some nausea and similar responses to the AC, but that it shouldn’t knock me flat. What I do have to watch for is neuropathy–numbness–in my hands and feet. Oh, goody. Since the chemo drugs accumulate in your system while you’re still taking them, these symptoms increase with time. Besides the Taxol, I received Benadryl, Zantac, Prednisone and fluids. It was another 3+ hour infusion. I slept through most of it, thank you very much Benadryl, and crawled home to sleep more. Until the night came and the steroids hit. Bye, bye sleep! But I got through the first couple of days without an issue.

Yesterday it hit. I was incredibly tired, partly from having a crazy work schedule this week, and I started getting leg spasms and nausea, but in a different way from the AC. With the AC I was queasy, but never felt like I would actually throw up. (I know, sounds weird.) The Taxol makes me want to chuck. And the spasms and twinges and sharp jabs throughout my body just make me feel like I’m battling tiny internal soldiers.

I hate this. I hate feeling sick. I’m tired of being sick. I’ve indulged in at least two crying jags in the last 24 hours because I’m pissed I still have 11 more weeks to do this. Yes. I know I can get through it. But I don’t want to. I want to feel normal and healthy. I want my frigging hair back! For that matter, I’d like my boobs back as well. And I want to stop swelling up like a blimp from the steroids. I can’t imagine what it’s like to be on constant chemo, as many people are. I feel so bad for these patients. I know I’m blessed by being mostly healthy and mostly able to lead a normal life. There are so many who are not in that position. But still, it sucks.

Tomorrow I’m going to Road to California. It’s our major regional quilt show and I haven’t been able to get there for two years. I will see lots of people I like and love and it will be fun. But I know my beanie-head will stick out and I will field a lot of questions and looks. I’m prepared. I will survive it.

These days the biggest gift I get is when I see someone and they don’t ask how I feel. I know that sounds snarky. It’s not meant to. I DO appreciate when people ask after me and I really don’t mind it. But I am so much more than this cancer. I am leading a full, rich life, despite cancer, and there are so many more interesting things to talk about than my nausea, treatment plan, upcoming surgery and anything else related to tumors and boobs. Yeah, cancer gets in the way a lot. I have to set limits on my activity and energy because of it. But mostly, life moves forward for my family and me and it’s a good thing.

I am not my cancer.

Shaken, Not Stirred: Hair Today, Gone Tomorrow

img_4748

Chemotherapy is going well and I’m tolerating it better than expected. Some days suck, but nothing too dramatic. I’ve managed not to throw up over the two treatments I’ve had, though I certainly feel like it some days.

The entire process of receiving chemo is surreal. I have a port-a-cath (called port for short), a device that was surgically inserted into my lower neck and shoulder area that allows the nurses to put the IV line directly into it, thereby saving my already stressed veins from the continual new stress of chemo infusions. The port leads directly into my jugular. Those who know me well know that I am completely creeped out by anything, except diamonds and gold, touching my neck. It’s my theory that in another life, I died from some neck-based trauma. My kid constantly tortures me by blowing on my neck and I almost laid Stephen flat one recent day for coming up behind me with a feather and teasing my neck. So to know that I have a fixed device that I can see and sorta feel imbedded in my poor neck is just one other thing I’ve learned to Don’t Think About. That’s my core technique for surviving the day-to-day reality of being a cancer patient. It’s not denial. It’s avoidance. If I can mentally pick and choose what I will and won’t focus on, I get through the day much more calmly.

An infusion day for me is a day off from work. It has to be. I’m too dizzy to drive after the chemo. I go in early. They have a big room set up with comfy recliners and a large TV. I’m hooked up to the first of five drips, usually starting with fluids, moving on to steroids, and then comes the Good Stuff, the two chemo drugs.

img_4529

The cocktail I am currently on is AC, which stands for the brand names Adriamycin and Cytoxan. These two drugs are very common in the treatment of early stage breast cancer. The Adriamycin is the creepy one. It’s toxic red, and administered in my port tube by hand, slowly injected, with the nurse carefully covered to prevent any direct contact between her skin and the drug. Some people have reported crying red tears after receiving Adriamycin. Not me. But my pee is a lovely shade of dark orange for a day. (Yep, you had to know that.) It takes about 3-4 hours to do this regimen and I have two more to go. After, it’s onto the Taxol, once a week for 12 weeks total. Then I’m done.

img_4738

During my wait, I work on my laptop, sew my slow-growing hexie quilt, watch movies, chat with the other patients and staff, or just veg-out. I like down time and I’m never bored so this is doable. Then I go home and do absolutely nothing. The last treatment, on the day before Thanksgiving, left me nauseous right after, which was different from what I did the first time and what I was told to expect. But in the days after, the effects were very mild and manageable.

I don’t feel these drugs going into me, and the once the needle is in my port, I don’t feel that either. It’s always the idea of what’s being done to me that is disturbing, which is why I relegate the whole experience to the Don’t Think About pile, especially while I’m sitting there. Included on the big list of Don’t Think About are:

  • My lack of boobs and the fact that my chest region looks like an AED blew up next to me
  • My weight (I’m not allowed to lose and encouraged to gain, which I don’t want to have happen)
  • The fact that I go to bed most nights at 8
  • That I can’t travel until we’re done with all of this chemo
  • That my brain feels like mush most days
  • Clothes shopping is a complete waste of time until after my reconstruction happens in the late spring (at least I’m saving money)
  • The holidays are coming and I don’t have the energy to do a quarter of what I love doing at this time of year
  • MY HAIR

I hate how cancer has taken over my whole life, along with my kid’s and husband’s. It’s become my new full time job, on top of the two I already have and being a mom and wife. But I can’t fault the team of amazing doctors, nurses and others who help, nor my amazing friends and family who constantly check on me and love us up and down. This is what keeps me and mine going, the love and concern.

Last week I started losing my hair–fast. I knew it was coming. We waited for it, prepared for it by cutting my hair short. But on that first morning last week, when I ran my fingers through my tresses and saw strands coating my hand, I was frightened and upset. Tuesday I started wearing a scarf to work. Wednesday also. Thursday morning, on Thanksgiving, Stephen and Sam shared the Wahl electric buzzer and I stepped into the world of a Marine recruit. The two of them were adorable. Me, not so much. I look just like my younger brother, whom I love, but who I don’t want to look like. Sorry Pete.

img_4741

My angst isn’t over my vanity, completely. It’s more about how not having hair makes me look sick. And in looking sick there are times I’m treated differently. Which is what I don’t want. I struggle mightily and mostly successfully (I believe) to be as normal as possible. I am capable of working. I want my brain cells to be engaged and stimulated. I want my family to not have too much of a drag on their lives by having to take care of me unnecessarily. This is essential to MY healing process and the absence of my hair sets that effort back many steps.

Yeah, there are wigs, and I actually bought a very nice one over the weekend, which I can’t figure out how to make look as good on me at home as it did in the store. We’ll leave that effort for this weekend. So instead I’ve got a small assortment of head scarves and that’s what I’m wearing right now. It’s not bad, and I take the time to make sure everything else looks good. But it’s not my hair, which I learned to love.

The wig at the store. Looked enough like my own hair to make me smile.

The wig at the store. Looked enough like my own hair to make me smile.

My hair was thick and coarse, and growing up in New York City, where the humidity is high and the wind is strong, I pretty much never had good looking hair. And more so as a teen when I was trying to control the stuff, but without the knowledge of products or good cuts to help. Every girl I knew had layered cuts, a la Farrah, but I couldn’t get my hair to roll that way. One time, when I was 14 and became inspired to have a way-cute short shag cut (this was the 80s), I instead ended up with Chia Pet Head for 10 months, until it grew out enough to put in a ponytail. Yep. Bad days those were.

Moving to the West Coast was the best thing to ever happen to my hair. Dry climate = manageable hair. Since, my hair has become my toy, something I’d play with during the day, my favorite accessory and my identity to a great extent. It took me four decades to figure out how to master my crop and now I don’t have it. I feel gipped and pissed. And I do worry that it won’t come back in, or will be much lighter. I’ve seen this happen to several friends, with this chemo, so this isn’t a baseless concern.

Before anyone dares to tell me all the things that I already know: it will most likely come back, it’s only temporary, it’s better than dying, etc…, let me just say that I speak my emotional truth here. Not my practical, logical, conciliatory truth. Being bald, for me, is the biggest personal emotional blow in all of this. Period. I don’t care how cute my husband and friends say I look. I don’t care that I “rock the bald” as Samantha says. I don’t care that I make pirates jealous. I care that cancer has taken one more thing from me and this one little thing is the very thing that makes me cry. So there.

I will get over myself on this topic. I’m already inching toward bald resolve. But, just for today, well, maybe this week, I’m allowing myself to wallow. A little.

Shaken, Not Stirred: Update. Finally. Part 2.

Recovering in the hospital from my mastectomy, Samantha and me.

Recovering in the hospital from my mastectomy, Samantha and me.

So I’m home from the double mastectomy. Recuperating pretty well. Dr. B even allowed me to take Sam to the Martina McBride concert a week later in Thousand Oaks. I’d bought the tickets before my diagnosis and it was breaking my heart not to be able to do this with Sam, to sacrifice yet one more thing to my cancer. (I am working on a blog post on just about what cancer has taken from us.) But Dr. B was great and told Steve that if we rented a wheelchair, that it would be good for me to get out. Samantha, who refused to attend the concert with anyone but me (“If you can’t go, I don’t want to go with anyone else!”) was thrilled to be pushing me around. I called up the TO Civic Arts Center and switched our tickets to handicapped. Steve drove us there and back and we enjoyed three hours with one of our favorite performers. It was wonderful and I felt good.

We kept the wheelchair that weekend and used it to attend a funeral, and to participate in the Survivor’s Walk at the Simi Valley Relay for Life.

The starting line at the Simi Valley Relay for Life event. This is the American Cancer Society's main fundraiser.

The starting line at the Simi Valley Relay for Life event. This is the American Cancer Society’s main fundraiser.

In my wheelchair with Sam pushing. She's in her cheer uniform.

In my wheelchair with Sam pushing. She’s in her cheer uniform.

So backing up a moment, (and this is not really a sidebar, but it’s just so painful still to put into words that I will probably sound more glib than intended,) my friend that I wrote about HERE took a bad turn for the worse and was actually in the same hospital as me when I had my surgery. The early morning of the day I was released, Friday, she passed away. She was two floors below me, and I never got to see her. Thankfully, Stephen and Sam did and were able to offer some comfort for her two daughters and husband. Her younger daughter is one of Sam’s oldest and closest friends, and we are close to all of them, spending many wonderful nights sharing dinners with them, or holidays, or having the girls at each other’s home.

Since becoming a mom 15 years ago, I’ve now lost five mom-friends to cancer: four to breast cancer and one to ovarian cancer. It kills me to know the pain these mommies went through knowing they would not be there for their children. That’s our primary job, especially when our kids are still with us, and dependent. And knowing and loving Hannah for as long as I have made her loss the worst, for all of us. She was an amazing woman, whose only concern was about everyone else around her. I don’t expect life to be fair, but I don’t have to like it when it’s not.

What I can’t help but be incredibly proud of is Samantha’s courage in going to see Hannah. Here is a 15-year-old highly sensitive kid watching her own mother go through a life-battle in front of her for weeks, and she wants to go and say goodbye to a woman she rightly considered one of her Other Mothers. I am humbled by her bravery and her selfless concern for Hannah’s daughters and husband. She has only ever thought about them through this, and continues to try to help. Wow. That’s some human being breathing down the hall from me.

So a week later, I’m doing well and trying to take it easy. I was told not to make any large movements with my arms, especially the right side because there were many lymph nodes removed from there. My family and friends are spoiling me rotten, not allowing me to do much. I felt like I was healing. But my drains were still draining and I began taking my pain pills more regularly, which should have been a sign to me that something was not quite right.

Something you need to know about me is that I have an inhuman tolerance to pain. It’s not a good thing. It’s gotten me in much trouble over the years with my miscarriages and ectopic pregnancies. And stories about how I never felt the contractions when we were trying to induce Samantha’s birth (She ended up being an emergency C-section. Yep, I don’t do anything easy.) are legendary around us. The only sign that my pain was increasing was that I was taking my pain meds regularly. I’d go to the doctors and say, yeah, I’m feeling okay. Not taking more than I’m prescribed, and I’m sore, but that’s normal, right?

Wrong.

Three weeks post-op and now I’m having out-of-body experiences where I’m watching myself crying from the pain but not understanding what’s happening. My entire chest was on fire. A case of the hiccups would start me crying from the pain, but then the crying would make it worse. All I could do was sit in my chair and watch TV. If you know me well, you know how weird that is. I couldn’t read, sew, talk to anyone. I was half-stoned from the pain meds, and they were starting to not work. My doctors were on top of me, seeing me several times a week, but again, even though I was FEELING pain, I still didn’t realize that this was not NORMAL. It’s so strange, I know, but that’s what was happening. And without me communicating accurately what my pain levels were, and the absence of a fever (another one of my anti-super powers) they could only assess based on what I was saying. They’d ask me what my pain level was and I’d say 4 or 5. Manageable with drugs. I refused to overtake my meds, but they were being taken on time. Every time. Without fail. And the nights were the worst. I couldn’t stay still in bed and often ended up in my new recliner, sleeping upright.

At three weeks, Dr. H started me on physical therapy to help reduce the swelling with lymphatic massage. Since the drains were still draining, and looked normal, this was a logical response. But I was also struggling with the drains. Big time. They have to be drained and the liquid amounts have to be logged. When the output reduces to a certain amount, they can be removed, but I was nowhere near that point, so there were beginning to be other signs of trouble. I had now been on antibiotics for 8 weeks because of all of the procedures. It was likely this single fact was what kept my symptoms at bay, and me healthier than I should have been.

This is what the drains look like and the chart we kept to log everything.

This is what the drains look like and the chart we kept to log everything.

The day after my first PT, I had two appointments: Dr. S in the morning to go over the latest Path-Port and future chemo, and Dr. H in the afternoon. It was that morning that Stephen realized that something was very wrong with me, probably because I scared to shit out of him by saying that I now understood why some people would rather die than continue to live with chronic pain.

At Dr. S, we found out that at last count, there were 25 tumors removed from my right breast. That’s what’s called multifocal cancer and that’s why I was elevated to a Stage 2 diagnosis. By the time we got to Dr. H in the early afternoon I was a mess! I couldn’t stop crying from the pain and the very short wait was filled with me sobbing and Stephen looking more scared and helpless.

I remember Dr. H coming in. She’s a very gentle, soft-spoken woman, younger than me and filled with kindness and skill. She sat in front of me, gently took both my hands in each of hers and said, “Jake, this is not normal. There is something wrong.” She then looked at my right drain and discovered that it had actually come out of me, which had to have just happened within the last hour or two before the appointment. And the liquid in the drain bulb, it did not look good. It looked infected.

“I think the problem is with the expanders and since you’ve already decided to have the flap reconstruction, I’d like to remove them,” she said, again, very gently.

“As long as I’m asleep for it,” I answered, thinking that at least if I was knocked out I wouldn’t feel this pain any longer.

She chuckled a little. “Of course you will be. You’re going back into the hospital. I need to schedule surgery for tonight and you need to go right over there to get checked in. But we will fix this.”

It was Thursday. Samantha was still at school. I was relieved that we were doing something and so was Stephen but we were scared. I called Samantha’s counselor, a good friend of mine, and an amazing support for Sam for many weeks now, and asked her if she or someone else could get Sam and bring her to the hospital for us, with as little drama as possible. She immediately said she would do it as soon as she picked up her preschooler and we met at Simi Valley Hospital. One of my best buds, Vicki, asked if we wanted her there. I don’t know what she had to drop to come, but I did want her and she did come and so did another of my best buds, Karen, who came by right from work. I had my tribe around me again, for the second time in three weeks.

I was in so much pain that even the difficult IV insertion didn’t bother me. I could only lie there, waiting for sleep. Less than two hours later, I was done and in recovery. We were told that I had the start of an infection that was being held off by the antibiotics. I also had torn my right pectoral muscle and the expander was moving around behind it. On the left side Dr. H said there was some weird tissue that my body was forming around the expander. She couldn’t really explain it, but it was obvious that both needed to come out.

When I woke the next morning I was completely without pain. Nada. Zip. I hadn’t realized until I wasn’t in pain just how much pain I was in! I went home after two days and life has been good again. Really good. A week later I was finally back at work, after four weeks gone. And that’s where I’m leaving this novel update for now, except to say that I am so grateful for the care that I’m receiving, both personally and medically. I have been so incredibly blessed, and even at the worst, I knew I was not alone.

img_3936

Shaken, Not Stirred: Update. Finally. Part 1.

Woman with breast cancer ribbon on white background

Oh, it’s been a busy, cray, cray time in and out of the Birdhouse with my happenings. I know I haven’t posted for more than a month, and I beg your pardon for the delay. I’ve given short updates on Facebook, my preferred social media drug, so there will be a little repetition here.

As last said, I had a bilateral (double) mastectomy on Sept. 21. What I didn’t really explain is the chaos surrounding that event, before and after. Once the pathology report (Path-Port) came back from my second lumpectomy showing that this damn cancer was deeper than any of us thought, we volleyed the options back and forth with my doctors and decided to turn first to aggressive chemo, much upped in type and time than we had originally planned.

(WARNING: Graphic medical info to follow…)

I was shopping online for knitted caps and turbans when I got the call on the morning of Sept. 16 that my surgeon was VERY concerned about the site of the second lumpectomy. See, it wasn’t healing. She had not inserted a drain into this one, for which I was initially very grateful. But my Poor Boob would not stop building up fluid. With the absence of a drain to suck out and receive the fluids, I ended up in my surgeon’s office several times so she could drain me there. With a huge honking needle. In my Poor Boob. Which was numb, but still…. (Are you gritting your teeth yet, because I am!)

The lack of healing was probably a factor of the cancer itself impeding the healing, we were told. If we continued to wait for Poor Boob to heal to start chemo, we could be waiting for weeks, and that would not be good. At. All. So I got scheduled for the mastectomy the next week. We were floored. Again.

I can’t tell you how hard it is to gently and firmly turn your emotions and prayers to one frightening treatment direction only to have to switch direction for urgent reasons. As a patient, I want to be calm and confident. I want my stress levels to be as low as possible, because this kind of stress is so damaging for the body. But sudden changes create fear and worry, and more so for my husband and kid. Poor Samantha has been reeling throughout this whole experience with the many changes in my status and diagnosis. Stephen has been more stalwart, but I can see the ravages of stress about him as well.

So surgery involved three surgeons: Dr. B would perform the mastectomy, Dr. TB would insert the Port-A-Cath for my future chemo, and Dr. H would do the initial reconstruction work. I was out for eight hours, in the hospital for two days and nights and went home with a couple of drains, this time on both sides. I tolerated everything well and the pain was manageable, I thought.

We were told several interesting things right after the surgery. For those who never met me in real life, I was fairly well-endowed. At a 34DDD bust, there was a lot of flesh to deal with, and this is one of the main reasons why it was so hard to determine the extent of my cancer.  With my dense breast tissue, all of the many types of scans I had could never ascertain exactly how much cancer was happening on my right side. And that’s why I decided to give up my left boob as well. The dense tissue issue is the same for both breasts and forever more, I would never trust a scan on that left breast. A smaller reason was that there was no way I would have reconstructed my right side to a 34DDD again, so a reduction would have been needed anyway. These are the things that we had to consider as we faced this surgery. What I didn’t have time to decide, though, (and this becomes important later) was what KIND of reconstruction I would have down the road, after chemo.

In a nutshell there are three main types: saline implants, silicon implants, and tissue reconstruction that involves using my fat (from my tummy) to build a “breast.” There are several versions of this, but it’s most commonly called the “flap.” When done successfully, it ensures that you have no foreign materials in your body, and is more natural, but what I would need to do would involve several surgeries, one of which would be major and leave me in the ICU for five nights. So this was a big commitment in contrast to the implants, which is usually a one or two surgery deal.

Because I was still researching, Dr. B implanted expanders into my chest, behind my pectoral muscles, which would help gradually stretch the skin over time to later accommodate implants, if I went in that direction. If I went for the flap, well it wasn’t going to hurt having them. They would just come out when the time was right.

We were told after the surgery that after years of hauling around 34DDDs–which weighed about 8 pounds together, ahem–that my pectoral muscles were deliciously well-developed and that should help hold the expanders in place. We were also reassured that having the double mastectomy was a good idea. When the path-port from this surgery came back, it was all good news: NO AFFECTED LYMPH NODES, CLEAR MARGINS ON THE RIGHT SIDE FINALLY AND NO CANCER AT ALL IN THE LEFT BOOB! Now all I needed to do was heal so I could start chemo, about a 4-week process.

TO BE CONTINUED TOMORROW BECAUSE THIS IS JUST TOO DARN LONG TO POST ALL AT ONCE.

Shaken, Not Stirred: The Gift of Cancer

batgirl1

Surgery happens Wednesday at noon.

I’m having a double mastectomy and the removal of most of my lymph nodes on my right side. Then there’s the partial reconstruction of my breasts. Somewhere in the middle of all of this cutting and stitching there will also be the insertion of my port, which will be used for the soon-to-come chemotherapy. Altogether I will be in surgery around six hours, and in the hospital for about two days.

Yep. Good times ahead.

Now that my anxiety has eased (I always do better when I have time to process big things) I find myself contemplating one of the counterintuitive aspects of cancer: that there is good that comes from cancer.

(My warning for this post is simply that I will be mushy, hokey and completely sentimental. Jump out now or deal with it.)

I know I am blessed. I am surrounded near and far by an incredible army of love warriors who protect my family and me and I have never taken it for granted. These are people who are each special in their own way. Their lives are filled with challenges and busy-ness and yet they have taken the time and effort to reach out and hug me in so many different ways.

One of the frustrations I often hear from those closest to me is that they wish they could help me. They feel helpless in the face of my diagnosis and treatment. My husband. My kid. My closest friends. My siblings and parents and other family. They have ALL said this to me recently.

I tell each of them that this is bullshit, that they are not helpless in helping me. I know that what they really mean is that they want to fix me, and they can’t. It’s up to my doctors, myself and God to fix me. Doctors have the skill and experience. I have the faith and the follow-through. And God, well God has all of fix-it power.

But that doesn’t make my loved ones helpless. Not. At. All.

Maybe they can’t wield the scalpel or write the prescriptions, but these incredible people are in my life every day listening to me, cheering me up and on, making sure I never fall so low with my fear and worry that I forget the absolute joy found in a simple smile.

Sometimes their love is delivered in a card, or a text or quick phone call. Sometimes, like with my husband, it’s taking me to every single stinking doctor appointment–and there are so many now I’ve lost count–without complaint. And when he holds me when I get scared and need to cry, telling me that I will be okay because there’s no way I’m going to leave him alone with our 15-year-old, I know I’m loved.

Love is having my small staff from our magazine work hard to take as much off of my plate as possible so I don’t have to put what little energy I have into making sure our magazine still publishes, all while sending me cute, funny, snarky texts and messages to make sure I keep laughing.

Then there are my close friends’ kids, who I watched grow up and become amazing adults, sending me gifts and flowers to cheer my day.

And then my daughter, who insists that she will stay with me overnight in the hospital because I shouldn’t be left alone, even though I know I will be drooling in my sleep all night from just getting out of surgery.

My New York sister wants to fly to Northern California to cook up a storm with my other sister (NY sis is a chef) and then drive it all down to me for my recovery. I’m holding that option for chemo days.

Love is when my co-workers stick their heads in my office door every day to check on how I’m doing, and then they give me hugs, lots of hugs. A few of them have been suddenly drafted to hold my hand as I’ve received bad news over the phone, which seems to happen while I’m at work more often than not, and then they thank me for allowing them to be with me!

Support is the family made up of teachers, administrators and staff at my daughter’s high school who constantly check on her, listen to her, hug her, give her the gift of grace when she needs more time to finish an assignment because she spent the day and night before caring for me, and then they do the same for me.

It’s my doctors praying with me at appointments and surgeries, asking for God’s helping hand for both me and them. It’s all of them telling me over and over that I will be okay, that this will not kill me. At this point, even if it’s not 100 percent true, I don’t want to know, because when everything is darkest, THIS is what keeps the light shining for me.

It’s Samantha’s cheer team putting together a recovery care-package for me to use and enjoy in the coming weeks, with special love notes from her coaches. It’s a staff member at school creating a locket with Sam’s input for me to wear with love. It’s all of my mom friends who are transporting her to and from her crazy schedule needs because we’re tied up at doctors.

Love comes to me in the form of messages, likes and emoticons on Facebook that never stop and always encourage. Then there are my oldest and some of my dearest friends too far to help in person who send me funny memes and jokes and videos almost every day. And what about those people in my life who are sicker, or poorer, or sadder than I am who still take the time to tell me that everything will be okay, and mean it?

There are yummy meals left on our doorstep, flowers filling our home with beauty and prayers lifting our lives to God’s care. Some of those prayers were offered when two prayer quilts were made for me recently, by members of different churches in two different states. I look at each yarn tied and know that someone, some stranger, took the time and effort from his or her day to wish me and mine well.

It’s the BatGirl cape that a once-casual and now forever-friend from Facebook made for me because she knows how much I love BatGirl. I draw a lot of strength from BatGirl–it’s a kid thing for me. When things were bad in my home growing up, I would become BatGirl and protect the world. Now BatGirl protects me.

It’s all of these moments and hundreds more I’ve had over the past 58 days that I would never trade for anything.

Not even my cancer.

Not even my cancer.

We’ve cried a lot over the last weeks, but it’s not always been from pain and fear. Many of these tears, maybe even most of them, have been cried with joy and humility. I don’t get it, why all of these people take the time to love me and mine. But I also know that I don’t have to get it. I just have to say thank you and mean it. And I do. People are amazing. I can never repay what we’ve received. All I can ever hope to do is pay it forward.