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.