"I Fell in Love with You When You Were Bald"

Hair has started to come out in frequent noticeable clumps a few days ago.  No bald spots yet but so glad I got the long locks cut off 10 days ago, far less mess. Also so appreciative of the gift a longtime and quite fashionable friend sent me: a head band that is perfect for my thinned out hair (wearing it now as a matter of fact) but as more chunks fall out, it widens. Then converts to a complete head wrap when I'm bald.

Debating if I should go this weekend for a pixie style cut. But at the rate the chunks are coming out, I'm thinking sometime next week I'll need it shaved.  Decisions, decisions! I did go ahead and order a couple more cute head wraps as I decided upon talking to others to skip the wig until cooler weather. Apparently, a wig is uncomfortable in heat. Plus, not entirely sure I even want one now. While my fellow Wednesday chemo buddies are beautiful women, I can tell the wigs from real hair so is it worth the expense and discomfort?

I'm actually pretty ok with this hair loss. Being prepared is part of it, but a well timed text from my father eliminated any lingering sadness. He had just checked in on me after I had seen first the collection caught in the hair trap of shower then my brush as I got ready for the day. "It'll grow back and remember, I fell in love with you when you were bald."

Daddies wield such power in their daughters' lives, regardless of age.

Speaking of dads, need to give a shout out to my husband. He took spur of the moment day off to take our son and his buddy to King's Dominion today. He was initially reluctant as I just had a chemo treatment yesterday (more on that to follow) out of fear that I might be too exhausted to be alone. But, once again, he honored a promise I extracted from him when I went into labor with our first child.

It was so incredibly important to me that our children's first experiences out of womb, even while being all cleaned up and examined, included being lovingly touched by a parent as well as reassured verbally the entire time.  Plus, they wouldn't be able to place the baby in my arms as they had to put back all my innards, stitch me up, and whatever else was happening behind that sheet they had erected during the c-section.  I had explained it meant more to me that he comfort and bond with our baby rather than hold my hand.

Over the years, circumstances have arisen that this was needed again. Obviously, it's happening big time now.

I have an awesome medical team in place and incredibly long list of friends who will take care of me. What I need is someone to be there for my kids, filling the void that happens as I undergo treatment. I need my kids to be doing not only what they'd normally do, but to still have FUN in their lives. Fun that I wish I could share but when I can't, gives me such joy to know it is happening for them.

So onto the medical update! That awesome medical team did their thing yesterday with my "little hammer" treatment.  It is amazing how cheerful the nurses are in the chemo room. I imagine it has got to be a hard job at times as well as mundane. But they keep a smile on their face and patiently and thoroughly answer all questions. It really is a pleasant experience, all things considered. (Now the side effects that follow the next few days aren't fun, but totally bearable.)

I am being treated for both the breast cancer and leukemia (the cancer had spread to one vertebra). After my "little hammer" treatment, Dr. R. gave me a thorough exam. This week, he could feel the lymph nodes with the cancer shrinking as well as more of the inflammatory aspects of my breast cancer disappearing. Which means the chemo is doing what it is supposed to be doing. Hopefully it is also working on what is happening in my vertebra.

And about that bone cancer, he also wants to put me on something that is technically for people with osteoporosis now to build up my bone strength. It certainly can't hurt and very well likely will help protect my bones from breaking from what's happening with the cancer growing there now.  It might not be needed, but why not get that insurance in place? Once again, making me feel I'm in such good hands with this doctor. I am so lucky.

Also lucky in that dear friends are coming to hang with me this weekend as my husband and son are heading to Maine this weekend. My white blood cell count dropped to the point my doctor wants me to be more careful about crowds and travel. I am on antibiotics just in case a wayward germ finds me, but then there is the part that a long car ride requires will be even longer with frequent stops. I'm at risk for a blood clot so can't take sitting in a car (or plane for that matter) for hours.  So having the option of fun weekend at home totally rocks!

Little Hammer Week & Mom Goes Home

I had my second chemo this week and must admit I went into with unrealistic expectations. Because I'm only getting one of the cancer killing drugs (as opposed to the three on "Hammer" day), I assumed the side effects would be minimal. I had been calling it "Mini Chemo" but a more apt name is "Little Hammer" because it still packs a punch.

Now I wasn't as exhausted, but it still knocked me on my butt the last couple of days in terms of fatigue. I'm also not getting a pass on the gastro related side effects.  If this follows the same timeline as before, by Sunday I should start to feel more like myself.

In other news… though they'll be back in a month, my mom and daughter left for Dallas yesterday. Which makes me a little sad but also a bit relieved.

Don't get me wrong, having my mom is both entertaining and reassuring. Her way of coping is also of great benefit to me personally. As I will be spending a great deal of time in the coming months at home, she was on a mission to make my place very comforting, which to her includes home improvement, organization and, of course, cleaning. She got more done in 10 days than I'd have done in 10 weeks. Plus I get the bonus of a visible reminder of just how much she loves me as I cope with the consequences of the aggressive treatment plan.

That said, Mom wore herself physically out. Then there is the emotional drain...

I know my cancer is hardest on her (and my dad).  Luckily, like myself, she also has an incredible support network where she lives. Which isn't surprising since both she and my dad raised me with the belief that part of taking care of yourself is building and maintaining supportive relationships.

So her returning home will allow her to be nurtured for awhile.  She got to see with her own eyes that she taught me well so I won't lack for anything while she is back in Dallas.

Not that she won't be busy as she (and rest of my family in Dallas) are giving me a great gift in having my daughter visit for the month while my son is at camp. Annie and I had a much different summer planned. The idea of everything being cancelled for her and being stuck at home with me was incredibly upsetting.  Thanks to my family, that won't be the case now.

But I will miss them both the next month. The peace of mind though is totally worth it.

I Have to Admit, Landed Myself in Some Great Drama

On the morning of the day that is both my second chemo treatment (the "mini") and the delivery day of a giant flat screen, 3-D, "Smart" TV (thanks Daddy!)… I'm thinking about my love of a good drama.

Not the petty kind of self-absorbed people, that's actually boring. Also not the kind of drama that is the result of someone being in some sort of denial or stuck in a self perpetuating negative cycle, that is too painful to watch. I'm talking the palm to the face, "I didn't see THAT coming" kind. You can't immediately guess how it will be resolved but you're invested in the characters so you want it to be resolved in a good way.  How their lives change as the navigate that drama is fascinating and often uplifting to me.

So it's kind of fitting that I just don't get the breast cancer that everyone knows about at a relatively young age, I get the one most do NOT know about. The super dramatic one:  intense treatment program and "exciting" survival odds. And I have to admit, I appreciate the drama of it all in a weird way.

Which shouldn't be a shocker given I am a major Walking Dead fan. For those who don't watch, that show is not about zombies so much but how people maintain their humanity. (Not that the zombies aren't awesome to watch!) Best episodes aren't just about surviving but finding a way to live in an existence that is uncertain, painful, scary and sad.

Though, I still get to benefit from having  cancer in this time in history.  Science has stepped up and given my doctors some great tools to kill this thing. I'm thinking also about the fact that there's entire industry around breast cancer with an awesome marketing machine behind it.  Count how many products have that pink ribbon on it. Which I completely I appreciate. Heck,  I just scored yesterday a monthly free maid service for the duration of my chemo because of this awareness.

So as I sip my green tea (coffee tastes funny to me now), I'm reflecting on the fact I landed myself is some good drama.

Of course, I would have preferred the drama to just remain in the entertainment world, but I wouldn't be me if I didn't pause and admire good drama when I see it.

Hair and Femininity

John Wayne once said "Courage is being scared to death but saddling up anyway."

As far back as I can remember, I've equated hair, especially long hair with femininity.  All the prettiest girls had the long flowing locks. Jan Brady. Farrah Fawcett. Amy Sprague (best friend from first grade).

Then there was that period my mother thought I'd look adorable with a short shag. Maybe it only happened once but I got confused with being boy, much to my horror.  Every time someone told me I looked like my dad, I heard "look like a man." I never went short again.

Losing my hair is going to be tough. So I took a page from John Wayne's playbook and saddled up anyway: got my hair cut shorter than I ever have in my life.  Can't say I love my new 'do, but I love it was my choice. In a few weeks, I won't have a choice.  Some questioned why if it is going to all fall out soon, why bother?

My thought was it would be less giant chunks coming out on my pillow, in the shower and on my brush.  I figured also I could get a wig made that resembles this style so I have realistic "transition" look while my hair grows back next year when the situation calls for it.  (Love the idea of having a few fun wigs).  But more than anything, it is more about my facing my fear, albeit a minor one big picture wise, of this process I'm undergoing.

Official Launch of "Save Holli's A$$ from Cancer, LLC"

Wednesday was the official launch of my new enterprise: "Save Holli's Ass from Cancer, LLC".  (Sorry if anyone is offended by company name!) I have a top notch management staff (my doctors) in place along with the greatest support team a woman could possibly have.

Dr R had pulled some strings to get me in last minute on a holiday week no less to get my Mediport placed because he wanted no delay in getting the chemo started as the cancer had spread to some bone marrow in one my vertebra.

I ended up in the Heart and Pulmonary Unit for the procedure. Because my first Hammer Chemo treatment would immediately be following my surgery, he wanted me me to have it done in a room on the Oncology Unit at the hospital adjacent to his office. That way I'd have around the clock care that night.

Quickly I was settled in my room on the oncology floor, in this awesome bed with all sorts of bells and whistles. Then, I got wheeled down in that thing to the other department for my procedure, Cleopatra style. I had to do a few royal waves. Couldn't help myself.

Unfortunately for me and the gentleman behind the curtain next to me, but fortunately for the emergency patients who needed immediate attention, we got bumped a few times from our time slots. I was down there a good two hours with no distraction of any kind as had left my family, books and iPhone up in the room. And that's when I started to get scared and sad. Some of if fearing if the procedure was going to hurt but what brought the tears was the old "I don't want to leave my children motherless." Tears starting flowing despite my not wanting do that in front of strangers...

But an interesting thing happened. I caught my breath and of all people, felt my departed, maternal grandmother "there."  Not like a ghost or anything like that. Just the part of her that I carry in me, if that makes sense. She was a no nonsense but very loving woman. In my mind, she was telling me she's there with me. This is is hard and scary but the wallowing needs to stop now. Tears dried up, chest pain stopped, peace descended on me.

Then I overheard the guy next to getting more and more irate that his procedure was getting delayed. He was getting rude to the nurses. It just wasn't sinking in to him that he was being inconvenienced because someone else's life needed to be saved! I'm a pretty polite person by nature but it hit me that in this process where in many ways that I have zero control… I can control how I treat the people around me helping me. Make sure they know I appreciate it and when sometimes I'm inconvenienced, it doesn't change my gratitude towards them.

So between Grammy and that realization, rest of my time at the hospital kinda rocked. The 4 plus hour chemo went very well. In fact, it began with an hour long high thanks to the mega dose of Benadryl. (Sorry for all the weird voicemails and emails to certain people sent that time!) My nurse is a breast cancer survivor so between rounds of the various treatments she'd be sharing all sorts of helpful tips. The nurse who took over, her husband survived colon cancer. And of course, Dr. R's visits had such a calming affect. My crush is still there!

Even when I had to wait longer to leave because of another issue with my incision the next day. It allowed me to meet with the visiting chaplain who made the rounds as well as a pair of Breast Cancer Counselors who were also making the rounds that day! Both inspiring and full of more practical/useful information. Food wasn't too bad either.

The nausea side effects are minimal this first round, not sure if it is due to all the medication prescribed for it or just because it is the first time. I got super tired last night but eyes popped open at 4am but did as doctor suggested, took a sleeping pill as sleep is key. I feel kinda weird at times but overall nothing beyond just feeling uncomfortable.

I will say the out pouring of love and support is really what is behind the successful launch of "Save Holli's Ass From Cancer, LLC".  Can't get over just how many blessings I have going into this. Mind blowing.

Defying the Odds

It is Stage 4, Inflammatory Breast Cancer (IBC). I managed to get the rare breast cancer (represents 1% of breast cancers.) It doesn't act like the cancer most of us civilians have read about either. In fact, some family doctors miss it because the symptoms are rather like a simple breast infection called mastitis. (Luckily my doctor didn't!)

What makes my cancer stage 4 is that it has spread. Which is often the case because my cancer is a freakishly fast growing, usually diagnosed at least Stage 3 but often Stage 4 like myself. 

Mine has spread beyond the tumor in my breast to several my lymph nodes in my chest. What looks like a small tumor is also showing up in my lower spine (specifically my L1 and L5 vertebra). However, there are no tumors or even cells showing up in any of my vital organs. 

Also, I'm ER/PR positive and HER2 negative… I sorta kinda understand why that is good. Something to do with there being drugs out there that have often work in situations where that is the case. 

It is officially incurable but totally treatable. In fact, my oncologist has been treating some stage 4 patients for decades now. Technically, they have cancer but no tumors that are messing with the quality of their lives. 

IBC is a very aggressive kind of cancer that my doctor explains requires an equally aggressive approach in treating.  Over the next year or so will be a series chemo, surgery, radiation and hormone therapies. But in my immediate future is the chemo. Right after my mediport is placed in my chest tomorrow, I get wheeled over to oncology to start the regimen. Dr. R is putting me on what I have dubbed "The Hammer Cocktail" of chemo drugs.

For the next 4-6 months, every three weeks I'll get the Hammer Cocktail. In addition to my hair falling out, there will be 2-3 days of extreme fatigue and varying nausea. Plus some other side effects that I'll notice but shouldn't interfere with my daily activities.

Weekly, I'll get a smaller dose that I probably won't cause the same fatigue or nausea.  I also will get my blood drawn every week so that they can watch for all sorts of things. Biggest concern is keeping an eye on my white blood count cells as those are what fights off infection.

Life with a compromised immune system will require some changes in how I (and my family) do things. All manageable, of course.

I am sad and scared. Can't yet articulate how I feel about it in regards to my children. (Just typing that sentence my chest tightens painfully). But that said, yes my cancer is not curable… however, right now,  it is not terminal either.  Yes, I'm looking at some not so great odds but those studies aren't taking into account so many other advantages I personally have going into this.  My age, my access to great medical care, etc.

It occurs to me that I've already defied the odds in getting the kind of breast cancer only 1% get. I now have a history of defying odds so why not operate with the belief that I will continue to do so?