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.