Shaken, Not Stirred: Hair Today, Gone Tomorrow


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.


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.


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

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.


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?


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.


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.