Update Time

For those friends who are on Facebook with me, you know I spent part of last weekend in the hospital. I had a fever and they wanted to rule out any infections running amok given my immune system is compromised. After a series of blood tests where they could find nothing and being given antibiotics just to be sure, I got to go home around 10PM and sleep in my own bed. It's a comfortable hospital with great staff, but my own bed is so much more comfortable. 

So it turns out that my delay in surgery (or Removal of Mothership as I call it) isn't just because of August's blood clot. As it often happens, cancer adapts to the given chemotherapy so stops working.  The "Hammer" got us halfway to an operable sized tumor, but time to switch it up. I'm now taking Xeloda. I'm thinking of nicknaming this one the "Tiffany Treatment" for reasons which will become clear by the time you get through this post. 

It has been difficult to accept that there is no set timetable for the next steps, especially with the holidays around the corner. No way to know how long it will take or if my cancer will become chemotherapy resistant again. That is the downside…  but there's actually an upside!

This new regimen is so much easier on my body than the other one. It's a daily oral chemotherapy that I take for two weeks then have a week off before starting again. It doesn't become the full blown "chemotherapy" until it has metabolized in my body and in the actual cancer cells. Which is why the side effects are only mild to moderate. 

For example, my immune system doesn't take the hit it did on the "Hammer". So in a couple of weeks my ban on indoor settings that include lots of people as well as raw fruits and vegetables will be lifted. There is some fatigue and mild gastro type issues, but so far, not the show stopping kind. My hair should start growing back too! 

Only potential side effect I dread is hand foot syndrome.  That makes it painful at times to walk and use hands but that doesn't happen the majority of time. In short, it's not unrealistic to hope for a quality of life improvement the next three months. I say three months as that's how much was delivered last week. Could be taking it for more or less time. 

Now it is delivered because the cost of this chemotherapy is so expensive, you can't get it from a pharmacy.  The price of it is why we didn't start with this drug too.  It is crazy expensive. No insurance company will approve paying for it until the less expensive treatment (that is often effective) stops working.

At first, I was annoyed we didn't start with this therapy… I would have avoided the mediport surgery, clot issues, hair loss etc. Then it occurred to me that when this one stopped working, I'd have to switch to the "Hammer". Going in this order, it's like a gift of sorts.

Between that and the cost of it, hence the nickname "Tiffany Treatment". Seriously thinking about putting the pills in one of those famous blue boxes. Imagine how fun that would be to open twice a day? I could even include a "why thank you George Clooney!" right before opening.  

Speaking of famous movie actors, I watched with my daughter last night a classic tear jerk chick flick: Steel Magnolias. (Stop reading now if you're someone who never saw the movie and want to see it.)  As I had seen it in 1989, I forgotten a lot of it.  I knew the plot but not the details such as the scenes between the mother/daughter characters.

The hardest for me to watch was when the daughter was dying and it was breaking her mother's heart. It occurred to me that there's a chance my own mother is going to have to go through that. As a mother myself, I know the pain she will feel… and it made me cry to imagine her having to face it.  Even the next day, as I write this, my eyes well up to picture her in such pain.

Before any one thinks I've given up, that's not the case at all. I'm still hoping be a part and taking actions that show promise to land me in the group of people who live for decades with cancer.  But I'm very much aware that things don't always go the way you hope. I know if that's the case with me, while not going to rejoice, I know I'll be at peace with it.

It reminds me yet again something that I know is often hard for some folks to grasp: What I'm dealing with is emotionally hard on me, but it is much harder on those who love me. Even at this stage, I can hear it in their voices and see it in their eyes just how difficult it is for them.  Which is why I'm even more pleased with the new chemotherapy. I anticipate as I feel and look better, it's going to ease the fears/sadness of my loved ones.

Yep, I really need to investigate storing my new chemo drugs in a Tiffany's gift box!

Pinktober Backlash

It seems everywhere I turn this week, there's a pink ribbon on something as it is "Pinktober", the month dedicated to raising both awareness and funds to support breast cancer research. And in my following news related to my stage of cancer (4), I see a backlash against this campaign. Some are more angry or passionate than others, but the theme is that very few dollars (and therefore little progress has been made in recent years ) is going towards extending or saving the life of those with stage 4 or metastatic breast cancer.

For those who don't know, that's when the cancer has spread from the breast, most often the bones, lungs, liver, or brain. Unlike the other stages, this cancer has no cure. It may go into remission and/or be treatable for years but almost 100 percent of the time, it kills you in the end.

Personally, I don't feel any anger that only two percent of all those funds raised goes towards curing/treating those at stage 4. It's hard for me to find fault as not only have I've benefitted from the raised awareness, but I'm all for increasing the survival rate of anyone who has cancer. It does make me  very curious.

Not to be a downer, but 30 percent of those who were diagnosed with an earlier stage cancer, even after a successful treatment end up with metastatic cancer later down the road.  If only two percent came back at stage 4, it would make sense to me.

Is it more of an image thing in fundraising? It is easier to raise funds for a cause that is saving the lives 70% of people?  People just like backing a cause with better odds? As someone with a marketing background, I see that being a much easier, campaign to create and execute.  Speaking of the marketing side, I have to admit I so prefer the "ribbon" (pictured in upper right corner of this post) designed for the campaign to raise awareness for metastatic cancer. Much more interesting than the solid pink if you ask me.

If this "Pinktober" you're looking to donate to funds for breast cancer, consider donating to research dedicated to save the lives of folks like me who are fighting stage 4 breast cancer. Click that multicolor, interesting ribbon to go to a fundraising site specifically for that purpose. Thank you to all who have and will donate to either ribbon cause.

TV Therapy

My son and I have discovered via Amazon Prime, Showtime's The Big C. It is a TV "dramedy" that ran from 2010 to 2013 about a family with a mother close to my age with son same age as mine. First episode she is diagnosed with terminal melonoma as it has spread to vital organs. She has been given 10 months to two years to live.

Most people are surprised we both enjoy this show so much as you'd think it hits a little too close to home. (Reminder, though stage 4, my cancer hasn't spread to any vital organs at this point, so treatable for years.)

I think the real draw for us is to see these rather quirky characters not just navigating through some of the hard things we are but doing it in a way that leaves us laughing. It is awfully hard to be sad or scared if you're laughing.

This is been my personal belief for years…  one I'm practicing with my family and friends as we deal with my cancer. As I was just telling a friend yesterday, I think cancer is hardest emotionally on the people who love the person with it. Because I love them, I seek every chance I can to let them know that while it sucks, there are so many blessings that keep emerging.

One of the favorite games I taught my kids is sort of like bingo.  Whenever something great falls into our lap because of cancer, the first person to shout "Cancer Perk!" wins.  And there are so many, many perks!  First of all, during Hammer Week Chemo, I have friends bring dinner every night for five days. Which is great just for the tasty meal but also I enjoy the chit-chat at drop off. Sometimes it is a friend I've not seen in person in weeks, sometimes months even.

Cancer got both of my parents up here for a visit. Both of them were on a generous mission to make our home as comfortable and entertaining as possible, so a few rooms were organized and redecorated (which included the addition of a giant "smart" TV).  One of my favorite people comes out every weekend to run errands with me then just hang out. It also brought a dear friend from Minneapolis who I've not seen in years. New friendships are also developing.

But wait. There's more! Thanks a couple of breast cancer charities, we have a cleaning service and in the spring/summer, access to a vacation house on the beach!

The biggest "perk" though, the one that my son and I find ourselves recognizing and discussing after watching The Big C, is how it has made us reevaluate our priorities. Of course, he is scared of the idea of my dying while he's still in high school or college, but he's pushing past that and embracing the focusing on today.

Today, I may look a little funny with the hair loss, need him to wash his hands a lot and I need a nap… but otherwise, nothing has changed other than we're now both have a new awareness that we should enjoy today as we don't know for sure how many tomorrows together we have.

Our new focus is to cherish the people that really matter and the people who just bring us down, just politeness is all they get. Our activities (family or personal) are also viewed from this point of view. What is the most valuable and enjoyable use of our time? Material objects seem far less important. For Christmas, we discussed the idea of just one gift and the money we'd normally spend, put that into a really fabulous trip. Our entire family agreed that we enjoy travel far more than new games, designer clothes, gadgets, etc.  This concept was sparked by an episode in the show! Indeed this is "TV Therapy".

We're now in the third of out four seasons, based on the writing style so far, my gut is telling me there is no miracle for the lead character. Which will be hard for us both to watch when the 4th season winds down but I expect it to be just as therapeutic. And hopefully, we will be laughing at it so when my time comes—be it two or 30 years from now—we'll also see the funny with the sad.

Lesson Learned: No More Dr.Google

Unless a body part is dangling or blood gushing, I have never called my doctor first for any ache or pain. My first move is to try a home remedy that I find online for a day or two. More often than not, that saved time and money for any ache or pain I had.

Last week, Dr. Google provided treatment ideas for the "it-hurts-so-badly-because-slept-on-my-neck-wrong-made-worse-by-coughing-and-sneezing-from-a-cold" but when on day three it turned into what I thought was a "and-now-there-is-some-sort-of-sinus-infection-since-there-fever-and-swelling" thing, I knew I needed to call the real thing. He wanted me in his office immediately. Turned out, Dr. Google had misdiagnosed me. It was a blood clot and infection, which is potentially life threatening.

Just like the start of this saga back in late June, I was clueless as to the depth of the problem thanks to Internet Medicine…and likely denial.  I expected he'd just give me prescription then I'd be on my way. Instead, I was escorted by one of his nurses to the ER, conveniently located within walking distance. After a flurry of tests, learned that a clot had formed around my Mediport tube thingy. It was painfully inflamed and that clot moving at that size would be a Very Bad Thing.

For the pain, they gave me morphine which worked but quickly but felt so uncomfortably weird. Why any one would use it for recreation baffles me. When it hits it's not a pleasant euphoria, it's disconcerting. But it did end the pain so I am glad it is available should it be needed.

Also, I was put on blood thinner (to decrease chance of my blood flow moving that clot) via a shot in the tummy (which feels bee sting) and antibiotics, scoring myself a three day stint in what I like to call "Club Med-Inova", for a second time. The reason for being there sucks, but the actual time there doesn't, primarily because of the nursing team.  Inova is a physically comfortable facility plus I adore and trust my doctor.  However, it is the nursing team providing the bulk of care and support and these are wonderful people.  They all come together making what could be a scary time comfortable as possible. I'm convinced that everyone drawn to hospital care has a special empathy gene, especially the nurses.

Given my hospital experience is limited, I really found myself wondering about what it's like in the various departments from a nurse's point of view. My main day nurse had an interesting observation about oncology department in particular.  Often those with cancer who end up in her care have a sense of peace that just isn't there in, say the heart/cardio patients. (My theory on that difference is often people with heart/cardio problems are challenged when it comes to handling stress, which is made worse in a hospital setting.) But even more remarkable to her is that that peace also comes with appreciation for even the smallest acts of service and kindness. Dying patients, who you'd think would be the most impatient given the ticking clock, are often the most patient and grateful.

Even only nine weeks into treatment, this makes sense to me. Now, I still have my bouts of fear and sadness, but more often, I'm just grateful. I've made peace with my somewhat uncertain prognosis, too. We are all going to die. My being aware of potentially how and that my life may be shorter than I thought has opened my eyes to remembering each day has its small joys and potentially great joys if I'm in a place of gratitude. Scared, sad or angry feelings make joy impossible to feel.

Being thankful reminds me: Friends who have worried that my thank you notes for their kindnesses are a chore to me. Far from it,  I actually choose to do them during my chemotherapy for it puts me in the proper mindset. One that is of gratitude rather than discomfort or resentment.

So let's wrap this up with those interested in an update on the treatment plan details… Chemotherapy, will commence again on September 10th. Between the clot (and treatment), infection and super low white blood cell count, it's better to wait. My Mediport is unusable now but they're waiting for the safest time to remove as the tubing is also holding in place that a clot. So they're going to install the day before a PICC line into my left arm. Hopefully it won't have the same clotting/infection issue but the plan is for it to come out after my last scheduled chemo on September 24th.

Sometime late October should be the mastectomy. The waiting a month is to give my immune system a chance to recover from chemo so that it will be able to aid the healing of surgery. But the decision may be made for me to undergo one more cycle of chemo (mine is a 3 week one).

In the meantime and moving forward, if something hurts:  Call the doctor… call the doctor… call the doctor!

Unexpected Impact of a Celebrity Suicide

Those who are friends with me on Facebook know Robin Williams suicide upset me. It wasn't just because that silly and sweet man charmed me onscreen was gone forever.  I certainly was sympathetic to the idea of anyone, regardless of their profession, being so sad that death is better. But there was more, especially when it was revealed he had recently been diagnosed with a potentially treatable for years but incurable disease. That it way too close to home for me.

I did the research when I got my diagnosis of an eventually fatal disease. Even the best case scenario will be difficult at times and the worse case scenario is frightening, to say the least. The uncertainty of whether it will be best, worse or somewhere between case scenario can be utterly overwhelming alone.  Life as I knew it changed forever in a way I never saw coming.

My imagination lead me to picture that Robin, like myself, was both grieving and scared in the face of this diagnosis. His solution to guarantee he won't suffer the negative aspects of the worse case scenario as well just skip over the uncertainty is one that naturally occurred to me too. However, that was just a passing thought for me. As soon as it formed, what has driven my entire life kicked into gear. Hope, faith and love replaced, well at least quieted, the fear and sadness.

While I know my cancer will never be cured and it is likely what kills me in the end, I have hope that I can make it to that group who lives 5 plus years. Even better, I know there's a chance my cancer could become "NED" (No Evidence of Disease) for months, years even maybe even decades. I have the faith that regardless, something from this experience is to be gained that I will cherish and never could have if I hadn't gotten cancer.

Then there is the love I have in my life. Love for and from my family and friends. Love from an entity I choose to believe is God. Hope, faith and love all work together for me, motivating me to roll the dice despite all the uncertainty, fear and sadness. Robin's choice isn't on the table for me.

My oncologist and I were talking recently about the next step after chemo which for me will be a surgery. He shared that some women who are also at Stage 4 decide to skip the mastectomy, avoiding also the reconstruction surgery. The thought is the horse is out of the barn, so to speak, with the spread of cancer to other parts of the body so why go through the surgery? The tumor in my breast isn't fatal, where it spread (that teeny tiny lesion in my spine) won't either (will hurt though if it makes my bone break from inside out), but that's now being treated with chemo. It has to hit a vital organ and so far, none show it!

That said, having the mastectomy increases long term survival odds significantly as there may be other "horses in the barn" that haven't found their way out yet but might at some point down the road. I explained that I want to take every reasonable step to give me a better chance of living as long and well as possible. I am indeed prepared for the worst but I am hoping for the best. The pain (both physical and emotional) of losing my breasts is worth it to me if it gives me better odds of having a longer life. All of what I'm facing treatment wise is worth it to me for the chance of having more time with those I love and in this beautiful world in general.

Robin William's (imagined as I have no way of ever knowing) conclusion that it is not worth it hit me hard.  He touched on a fear I didn't realize I had, which is the possibility of losing my hope, faith and love, which are precious lifelong companions of mine the more I thought about it. Even when the day comes that I'm told that my cancer is no longer treatable, I still want those companions. Now I know intellectually that he suffered depression for so many years so it is quite possible he never had the same companions ever.  But still, the idea of life without hope, faith and love scares me more than my cancer.

"Whoa We're Halfway There... Whoa Livin' On a Prayer"

With a nod to Bon Jovi, I'm six chemo treatments into what is tentatively set to be a 12 treatments plan (over the course of 12 weeks). My nodes are responding the way Dr. R wanted at this stage… but he's seeking bit more "dramatic effect" on my breast. It started off with bang in terms of response then last couple of weeks, not much difference. He is expecting/hoping that the next "Hammer" scheduled for this upcoming Wednesday will get the results we want.

Towards end of the month, I'll have some scans done so we can get a good look at what is happening both inside my breast but also that vertebra that has the cancerous lesion. If it has shrunk enough, then surgery will be scheduled. If not, more chemo treatments will be scheduled. While I hope I don't have as much as four more months ahead of me like some IBC patients end up needing, I can deal if that's the case.

I've actually adjusted to the bald head and having some fun channeling my inner gypsy with the various head scarves. Still not feeling the need for a wig either. Bonus: not having to shave my legs! While not looking forward the loss of eyebrows and eyelashes, I did go ahead and get some bold new glasses that not only dominate my face, I'm convinced make me look smarter.

Smart Gypsy Lady is my new look/persona.  Well maybe Smart Napping Gypsy is more appropriate as I have a tendency to suddenly just run out of steam during the course of the day. I'll sit down, then stretch out… then doze off for 30-45 minutes! Which really isn't such a big deal given how comfy my house is thanks to my mom and dad's recent generosity.  Also, the fatigue isn't at all like the kind that comes with the flu or even sleep deprivation, just a sudden urge to sleep. Though, I suppose it would be a different story if I couldn't sleep.

Happy to report that the nausea one sees in movies is pretty non-existent for me thanks to some amazing drugs. Sometimes I have some other gastro related issues but again, drugs make those go away quickly enough.

I'm reminded again just how lucky I am:  I not only have a great insurance plan but in a financial place to cover the out of pockets for those drugs. A three day regime for the nausea I take for the Hammer Days is, for example,  $125 after insurance, without insurance, it is shockingly high and unaffordable for us. I feel badly for those who have to suffer through the side effects because they can't afford the medication that stops them.

Then I think about my fellow inflammatory breast cancer patients… My diagnosis was truly a mind blowing whirlwind of multiple doctor appointments and tests, sometimes the same day. Because of my insurance/finances, I was able to do what needed to be done immediately. I began my treatment plan less than 48 hours after my official diagnosis which is giving me a great edge.

But I've heard many stories of women with IBC getting delayed in diagnosis and treatment because of insurance red tape or not being able to afford what it doesn't cover so couldn't get a necessary diagnostic test immediately let alone see a specialist.  When the symptoms appear, it is at least Stage 3, but often at Stage 4. This crazy cancer can have tumors grow at measurable rate overnight. A week can make a huge difference in life expectancy. Between a misdiagnosis (often IBC is mistaken by family doctor for mastitis) and this delay due to insurance/finances it can be a couple of months before treatment begins.  I am very, very lucky.

My other good fortune that I'm thinking about is this afternoon that I'm getting not just the company of one of my best friends but two of them! My dear friend Cheryl is coming all the way from Minnesota to stay with me. I appreciate this visit from her also because I know it's not easy traveling with 3 young children. Between her and Judy, I'll totally milk the princess treatment. Smart Gypsy Princess will be me this weekend.

The Sweet Exhale

I've not been blogging because I was too busy holding my breath the last week.

The cause wasn't how I was feeling about my treatment or prognosis but how my 17 year old daughter was struggling with it. I had made a mistake in regards to her.  A. Big. One.

She and I had grand plans this summer. We were going to go to Dallas to spend a month with my family where among the many adventures included an internship for her at my mother's magazine.  Rather than cancel all those awesome plans, I thought it best for her to just go without me. She'd be with my very loving and capable family rather than stuck at home with me being too tired to do anything fun and unable to go to even movies because of my immune system being weakened.

What I hadn't realized was just how scared she was about what was happening to me. Out of sight, didn't mean out of mind but as time passed, just increased her anxiety.  She has a challenge with stress and anxiety that emerged last winter. When it becomes too much for her, how her mind copes is to "check her out." I know that it is vague, but as it is her challenge, that is her story to share.

How it affects me, is my story. It scares me and makes me so sad to see my beautiful daughter struggle that way. Believe it or not, this cancer crap is nothing compared to how watching her deal with her challenge makes me feel. Maybe that's why I was able to take the diagnosis as well as I did, I've faced something much scarier.

It was determined that given she wasn't getting better in Dallas, she not only needed to see her doctor but it would be helpful for her to be around me as her anxiety about me was the trigger. So we got her home for some TLC.

Today, after a week of holding my breath, I was able to exhale. I could see the "checking back in" starting. Which is such a relief.  Now I can go back to whining and reflecting about all the cancer stuff as what is far more important to me has righted itself again.

"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?

Cancer Can Be a Catalyst for Change

"Cancer is not something you say thank you for, but it can be a catalyst for a change for the better."

That, more or less, was a thought shared in the memoir of a cancer survivor that my mom sent me. Because it mirrors my personal experience that things I treasure most in my life came either directly or indirectly as the result of something really crappy.

For about a year now, I've been feeling like I need to change my life in some way. Wasn't sure exactly what though.  So when I read that idea, it really jumped out at me. Tonight, as I expect to hear tomorrow the answer to the question as whether or not I have a chance of my cancer being cured, it seems even more comforting… and a bit exciting.

"Have a Great Weekend", They Said.

Let's get the whining out of the way first. I still don't know if the cancer has spread to other parts of my body (making it the incurable stage of cancer).

Also unknown is when is my first day of chemo. The answer to that is contingent on some more tests coming back because those results determine my particular "cocktail of drugs." I don't know when it is going to start or exactly how often and for how long either, for the same reason. I did find out I'm getting this groovy little device called a "Mediport" this next Wednesday.

It is disc about the size of a quarter that is surgically placed in my chest just under my skin with a tube that connects to a large vein. Chemotherapy meds are given through a special needle that fits right into that little sucker. Bonus is that blood can be drawn from same port, which will be happening quite often during my treatment. The images of being a human pin cushion have been eliminated.

Now to move onto the non-whiney portion of this post.

As my friend next door as well as my surgeon told me, my oncologist is awesome. He just oozes with gentle strength and keen intelligence. You can see the compassion in his eyes as well. Kinda everything you want in a doctor. I seriously dig the slight Indian accent too. He is in complete agreement with my surgeon's recommendations regarding treatment, so that is good.

He explained that yeah, I have a super aggressive type of cancer. It probably wasn't even there 2 months ago. (I had worried my procrastination of my mammogram I screwed myself.) Because it's inflammatory, I can see the changes that happened just in a week to my breast just looking at it.

Which, on the plus side, because it is starting to look kinda gross the last couple of days, not so sad now to think about it being cut off. Having it replaced with a new one rather than having what I have now is actually preferred.

The way they treat cancer with chemotherapy has changed radically the past 25 years. There are so many, many medicines that target all the different aspects of a person's cancer. Which is something I also hadn't fully grasped. It's not just the kind of cancer that determines what drugs you get, but also these variations to what is happening on cellular level that vary from person to person. Which is why it's important that he get the results from this one last test on the sample taken on biopsy called a FISH test. They also want to make sure there's not something going on with a kidney or my heart that a certain therapy might make worse, which is why I spent my day at Reston Hospital going from lab to lab.

Speaking of my day at Reston Hospital, when you walk into the lab that you didn't book an appointment or is closing soon, upon hearing (as instructed) "I have inflammatory cancer and my doctor said I have to have these tests done ASAP", instead of getting more put out, they become extremely nice and I get right in. Thanks Cancer!

And in the middle of my marathon of meeting with doctors and various tests I had that PET scan, which turned out to be the oasis of my day. The two women who conduct it were so jovial. Sure, you're getting radioactive sugar injected into your veins (it apparently attaches to the cancer cells so you can see if it has spread beyond my nodes) but these ladies made that even pleasant. Then, unlike that MRI machine, the CAT scan was downright pleasant to me. I got wrapped in blankets and inserted into the tube where it was just a quiet hum. I fell asleep and woke up feeling so much better as a result.

I know those ladies are the ones who know if the cancer has spread but aren't allowed to tell me so I didn't bother to ask. Also, tried to get out of there ASAP so as not to start analyzing their behavior towards me now that they know. But they wrote a little note at the bottom of some paperwork that I saw later that afternoon: "Have a great weekend!" My mind started churning about what that meant.

But before speculating lead to a trip to Crazy Town, I decided that I really should just have a great weekend. Aside from my weird looking boob, I feel great. I have been blessed with so much that I am losing track! So thank you PET Scan ladies, I will have a great weekend.

Limbo Land Train Is About to Leave the Station

Today was a hard but informative day. Luckily I brought with me one of my best friends who not only goes back a couple of decades but also has a freakishly good memory. Which those who know and love her sometimes hate that she can recall every word said. In this case, it was a gift for sure.

 Met my surgeon who is awesome in that she explained everything very thoroughly yet was still sensitive to my feelings. Plus, I knew I had the right one when I started to show her my breast while she was asking the various diagnostic questions, "Whoa, hold off on whipping that out, let me date you first."

I have a rarer type of cancer called "Invasive Lobular Carcinoma" that is "inflammatory" (only 1-2%  cancers) and likely "Stage 3B".  PET Scan tomorrow will rule out or let us know if it is the treatable, but incurable kind that is Stage 4.  I have so much detailed information that explains what all that means, my head is about to explode.

But in practically speaking, I have to hit the ground running in terms of treatment and it's going to be marathon (18 months, give or take). My oncologist appointment got moved up to tomorrow morning from Tuesday afternoon so if I had any doubt, that eliminated it.

First up in the plan is 4-6 months of chemotherapy before surgery. My kind of cancer grows so fast it's best we try to stop the growth and ideally shrink it prior to trying to remove it.  I will know more about when chemo portion tomorrow. But for now, I'm expecting that sometime between October and December, I'll have the mastectomy. Then a month later will be the start of 7 weeks of radiation therapy. 

Six months after that.. reconstruction surgery. And here's a little silver lining, they will reconstruct my breasts using fat from my belly! So if I can get through this, I not only get to live, I'm going to look fabulous! 

Confession though, I did need about two hours this afternoon to wallow in a pity party. But then I remembered "Operation Don't Freak Grandma Out" so the kids and I focused on doing some cleaning certain parts of the house that if left as is,  she'd just shake her head and wonder where she went wrong in raising me. 

MRI: Watching "House" Isn't Enough to Know What to Expect

I thought I had been totally prepared for the MRI I had this afternoon, right down to taking a Xanax as recommended. (That probably helped!)  Plus, I loved that show "House" where some of the best scenes were between the doctors conducting a MRI on the patient who in about 20 or so minutes would be miraculously saved.

What I wasn't prepared for was every time I was told not to move (Very Important That You Don't Move), my nose or ear would itch. I expected it to be noisy and in a confined space, but didn't realize the sounds would sound like some sort of alarm and intermittent, so would startle me in the beginning. Trying not to jump when startled was hard enough but keep breathing calmly even harder.

No where did I read that you'd feel this weird sensation as it was taking images using the magnetic technology.  Not really painful, just this almost vibration feeling. It was actually uncomfortable in that spot on my back where I have a little degenerative bone disease in my sacroiliac joint.

Hardest part was not to ask the technician to describe what she saw and her experience what it is means. I will wait for the meeting tomorrow with the surgeon who will go over everything with all the various tests (biopsy results, mammogram, ultrasound and now MRI) in hand.

Limbo Land

It turns out that there can be this place between diagnosis and prognosis that I have dubbed "Limbo Land". I know I have cancer, and it's the "invasive" kind as the node biopsied has cancer. I know that I will be having a mastectomy, chemotherapy and radiation.

 I don't know yet my stage. According to Laurie (my "Oncology Navigator"), I am not Stage 1. But whether it is 2,3 or 4 is up in the air until tomorrow. For those new to this world as I was, all cancer sucks. Stage 4 cancer sucks the most as that means it has spread to other parts of the body, which decreases the survival odds.

 Not that I don't understand that those government issued odds are based on the entire population of women in the United States, it includes senior citizens, women who don't have insurance or access to the top medical professionals, or even nutritious food. It incorporates women who don't follow their doctor's orders as well as those without a strong support system. None of that applies to me. I know if someone collected survival statistics that match my demographic particulars it would be a different number. It is still hard not to keep thinking about "what if I'm Stage 4?"

I also don't know yet when the mastectomy will take place and when chemotherapy will begin. Because the area caught on the mammogram seems large (the MRI I'm doing today will pinpoint the size), they may try to shrink it via chemo then cut it out.

Tomorrow though, my answers to family and friends about what is going on should cease to be: "I don't know." I will be able to start planning accordingly. As much as I've been frustrated of having a week in limbo, there's been a degree of peace in it because other than assembling my medical team and alerting family and friends so they can circle the wagons, nothing I could do. Even when I start to worry about the possibly of it being Stage 4 this past week, I could calm my worries, with a "you don't know that yet."