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.