Violet

I decided to name my purple power port “Violet.” 

Somewhere in the back of my brain I remembered the quote from Alice Walker’s trailblazing book The Color Purple, "I think it pisses God off if you walk by the color purple in a field somewhere and don't notice it. People think pleasing God is all God cares about. But any fool living in the world can see it always trying to please us back.”  I knew I needed to name my purple buddy after a purple flower. 

Yesterday, after returning from the appointment to have the port implanted I posted a Facebook status update stating, “Be advised - I am now packing a purple power port.” To which Britta Peterson responded, “Packing a purple power port makes you sound like a bad ass AND violet is one of the most healing colors!” And it was settled. The combination of bad ass and healing energy sealed the deal. 

This morning I woke up at 4:00 AM, most likely due the steroids I was directed to take to staunch of nausea related to the chemotherapy I started today.  Just to make it all a little more exciting, yet one more winter storm raged down on this corner of the planet.  Bob and I arrived at the Andreas Cancer Center in Mankato amid pouring rain.  After seeing Dr. Singh, we headed to the treatment room – Me, Violet and Bob.  Violet performed splendidly and four hours of chemo commenced with only one tiny poke I barely felt.  I wrapped up in my beautiful prayer shawl and headed down this path. During those four hours, the rain turned to snow, schools were closed and the most anxiety producing part of the day turned out to be the drive back to St. Peter. 

As I have commented to others, I am sure the chemo truck will flatten me sometime in the next few days.  But right now, I am simply appreciating the world pleasing me back.  Lots of wonderful caregivers.  Lots of purple flowers.  Me and Violet being bad asses.

So Young

I have been looking for a metaphor that helps me understand this whole breast cancer business.  For the moment I have settled on journey.  It seems to me a journey takes you from point A to point B.  While you might return to point A following the journey, you return older, perhaps wiser and always with a few stories to tell.    

I have done what many would consider some pretty adventurous traveling.  I learned a great deal about myself from traveling.  I am always anxious in the days before I leave to go someplace new.  I honestly don’t like the “traveling” part and worry that something (delayed flights, missed connections) will go wrong along the way.  However, I also know that once I arrive somewhere, no matter how unfamiliar, I am adapt fairly quickly.  I know I am a very resilient person. 

I also know I meet incredible people on these journeys – people who guide and direct me, connect with me on a heart to heart level, and some even become lifelong friends.  To take advice from Mr. Rogers’ mom, I look for the helpers.

The next leg of my healing journey is going to involve chemotherapy.  Yesterday, I met with two oncologists at the Mayo Clinic in Rochester.  They explained to me that current research and treatment of breast cancer focuses more on the biology of specific cancer, and less on the size.  An individual might have two-centimeter tumor but the specific characteristics of that cancer make it less likely to reoccur.  Or someone can have a smaller than .5-centimeter tumor with characteristics that make it more likely to reoccur.  I am in the second category with the added feature that I had multiple sites with smaller than .5-centimeter lesions of invasive lobular cancer that were also estrogen positive and Her2+.  I know I will learn a whole heck of lot more about Her2+ cancer but it is consistently described as “aggressive” and is one of those nasty, little buggers that returns and spreads.  And since I am so young, it makes sense to do the chemotherapy followed by the estrogen suppression.  

I needed to emphasize that so young.  I turned 58 on Saturday and had an absolutely glorious and fabulous birthday.  However, I live in a world surrounded by 18 -22 year old college students and most of the time I feel the exact opposite of so young, so I get a kick out of being told that over and over again.

I also appreciated that the doctors at Rochester Mayo gave me an understandable summary of my chemotherapy treatment options with detailed risks and benefits.  I am opting for “TCH”, which stands for Taxotere, Carboplatin, and Herceptin.  The regiment is “once every three weeks for six cycles” followed by Herceptin (the drug that specifically targets the Her2) alone for one year.  Followed by Tamoxifen for five years.  

That is enough information for now.  Tomorrow morning (Wednesday, April 17^th) I am going to have a “portacath” put in, so they don’t need to poke me for every blood draw and I.V. (As I have discovered, I have my mom’s rolling veins.) Thursday, April 18^th I will have treatment #1 for chemotherapy.  I told a few of my friends I was going to make a decision, and then not look back and second guess myself.  That is what I am doing.  Come Thursday, Thundercats are go.  I will report back from the field. 

Brief Update

No April Fool’s jokes today, just a brief update.  This morning I met with Dr. Singh, who is an oncologist.  He went over the pathology report from my two surgeries.  All and all they found seven microscopic threads of invasive cancer in a few different areas.  The longest of these threads was 4.5 mm, and others were 2 – 3 mm.  So one way of looking at this is to view these individually and say the cancer was not bigger than 5 mm =.5 cm.  This is kind of a magic number because if the tumor is smaller than .5 cm, usually they do not do chemotherapy.   If the tumor is larger than one centimeter, chemotherapy is recommended. 

But the other way of looking at it is more cumulative.  There were 7 threads and if you added all them together they would equal about 3.5 cm.  Which tips the scale in favor of chemo. 

Within the oncology community, there is not a clear consensus on which way to deal with this information.  Dr. Singh’s recommendation is that I do the complete course of chemotherapy, and he spent considerable time explaining the specific drug and potential side effects.  But he also said, there is not a large body of research that specifically deals with this scenario of multiple small threads.  I told him, I had no idea how to make this decision given the information in front of me.  Doing nothing further, my prognosis is very good.  Given that my cancer is Estrogen positive, I will do the hormone therapy (Tamoxifen), which makes my prognosis even better.  Do I put myself through the trauma of chemotherapy – to improve those numbers by a percentage point or two?  Not sure.  Not sure at all.

So Dr. Singh suggested I make a trip to Rochester, and meet with one of the breast cancer specialist at the Mayo Clinic for a second opinion.  That sounded like a good step.  In this world of cancer there are no absolutes.  I know that.  But I like evidence-based decision-making and right now I don’t have enough evidence one way or another to make this decision.  I also do not feel any sense of urgency.  I feel very good about the decisions I have made so far, and I want to feel equally solid about this next decision. 

And today, while my killer cold is only slightly improved, my attitude is much improved.  I was glad I felt well enough to keep my appointment.  I felt overall the information from the pathology report was more positive than I was expecting.  And, I appreciated the open and collaborative way that Dr. Singh approached making decisions about the next steps.   

This afternoon I am going to see my primary care doctor, bring her up to speed on all this and hopefully get a prescription for some cough medicine with codeine.  Tomorrow I will keep my appointment with the physician assistant to learn about the port for chemotherapy.  Then on Wednesday, I am going to fly to Arizona and take a five-day vacation from thinking about cancer. 

Sun and Wind

Tell me about your despair, yours, and I will tell you mine. “

(Mary Oliver, Wild Geese)

Today I am trying to write my way out of despair.  On Thursday evening, a sore throat gradually made itself known, and then almost strangled me.  I spent all of Friday and Saturday resting, drinking quarts of hot tea and watching hours of network detective shows.  I have not slept through the night since this all started, and those 3AM – 5AM sleepless spells are taking their toll.

While the rational me knows this is nothing but a very bad cold, the two surgeries in two weeks, five weeks of recovering from surgery and now this! me feels really down. 

“Meanwhile the world goes on. “

(Mary Oliver, Wild Geese)

Bob has been absorbed in problematic proposals and deadlines, and Josh is living his teen-age life.  I lie on the couch, hacking and coughing and watching from the periphery.

Tomorrow, April 1^st, I am supposed to meet with the oncologist to come to an understanding of the next course of treatment.  I am afraid I will not be well enough to make the appointment.  If I do go, I need to track down one of those masks so I do not bring this pestilence to any other cancer patients (with compromised immune systems) in the waiting room.  There is something sickly appropriate about this happening on April Fool’s day. 

The sun is out today, but the wind is howling.  I try to focus on the sunny things – my incisions are healing and my left arm is getting a little more range of motion.  The birds who were so noticeably absent all winter are returning to my bird feeders.  And, really it is far better to be sick this weekend when there was nothing on the schedule than last weekend when there was so much I wanted to do, and I was able to do.  But it is hard to silence the howling in my head that says, “This is your fault.  You did too much last weekend.”  There is part of me that believes disease – dis-ease – is triggered by life out of balance.  But I don’t find any of that very helpful at this moment. 

My sister sent me an article about the healing powers of cinnamon and honey, so I am drinking green tea laced with cinnamon and honey, and cinnamon toast made from Sue Gunness’ fabulous brown bread.   I will go with the power of suggestion, but my dark mood is lifting a little. 

The temperature topped out at 38 degrees today, and the winds are about 25 miles per hour from the NW.  Not horribly cold, and not horribly windy.  Yet it feels like this particular year spring in Minnesota is going to need to claw its way into existence.  And this particular day, I needed to claw my way out of a fairly dark place.  But Minnesota girl that I am, I know spring and even summer will get here just not on my schedule. 

“Whoever you are, no matter how lonely,

the world  offers itself to your imagination

calls to you like the wild geese, harsh and exciting

over and over announcing your place

in the family of things. “

(Mary Oliver, Wild Geese)

Some Days are Diamonds

When I woke up last Thursday morning I felt good.  Not 100% good, but essentially pain free and anxiety free, for the first time since this whole journey with breast cancer began.  And from there, the day just kept getting better and better.  When I took a shower, I was able to use both hands to wash my hair.  This was the first time since my initial surgery that I had the range of motion in my left arm for my hand to reach my head.  If you have ever tried to wash your hair with only one hand, you realize this was a small but meaningful victory!

That day a package arrived in the mail from my cousin (okay, first cousin once removed) Karen Nelson.  Inside was a beautiful prayer shawl that had been handmade by her mom, Jeannine Rusinko, wife of my first cousin Deane Rusinko.  Karen is a cancer survivor and spoke from experience in her note when saying, “The road won’t be fun, but I know that you have a huge support network and it really does help.  Trust God will provide you with all you need for journey – a helping hand, a card in the mail, a compassionate health care worker and much needed hug.”

It also contained the following blessing:

Prayer Shawl Blessing

May you feel God’s warm embrace

as you wrap this prayer shawl around you.

May you experience the comfort,

strength and love of God,

encircling you in good times,

as well as difficult times.

May you be

lifted up in hope

surround by joy,

graced with peace and

wrapped in love.

Please know that you

are being remembered in prayer and love.

 . . . the steadfast love of the Lord endures forever.

Psalm 107:1

Lord of life Lutheran Church

Maple Grove, Minnesota

This blog is not the platform for me to venture off on my scattered thinking on faith, but I will simply say I believe in a whole lot of things that I cannot touch in the physical world.  I believe in the sacred within every living being, and when others pray for me and send me healing thoughts, I believe I am stronger for the journey ahead.  And, I know when I wrap that prayer shawl around me, I will feel surrounded by the love and support of family, friends, and all that is ineffable but still very real to me.

Thursday evening I felt well enough to attend the final dress rehearsal for the Gustavus Dance Company’s 25^th Anniversary Concert.  Though I rested a lot in between, I also felt well enough to attend every performance the next three days.  And it was glorious.  In addition to my current students, 27 alumni returned to campus to perform in a special closing dance called “25”. Over the course of the weekend, numerous other alumni, friends and colleagues attended the performance.  I got to connect with so many people who are important to me.  At some point, I will need to write more about that concert and everything I experienced, but for now I just want to point out that the reason I have not posted anything to this blog for a while is because I was too busy having fun.

Tomorrow is the 15^th Anniversary of the devastating tornado that hit St. Peter, MN. In reflecting back on that event, city administrator Todd Prafke wrote, “As others rushed to our aid that night and in the weeks that followed, we learned how to accept help when it is offered and how to come to the aid of others when they need it.”

I really do not believe bad things happen to people for a reason, or because they are meant to learn something from a situation.  Tornados hit hometowns, and cancer strikes individuals and both are devastating.  However, I hope to take a lesson from my hometown, and continue to whole-heartedly accept help when it is offered, and down the road I hope I can equally whole-heartedly reciprocate for others in need.  

Anxiety and Hope

Over the weekend, I was completely overwhelmed with anxiety.  I worried that my incisions were not healing properly, and there would be other complications.  But mostly I worried that it would be painful to have the drainage tube removed.  I have no idea how I ever got this idea in my head, but it was there.  I did not want to ask anyone – because I was afraid they would confirm my fear. 

All of this is somewhat understandable because there have been a number of procedures along the way that have been far more uncomfortable than I was expecting.  For example, the morning after my surgery, it took two technicians and multiple tries to get a blood sample from my right arm.  Apparently along with her migraine headaches I also inherited my mother’s “rolling veins.”

So going to see my surgeon on Monday morning, I was totally on edge.  I really, really like this surgeon.  She is a calm, no nonsense, and currently immensely pregnant woman with a pierced nose and multiply pierced ears.  She told me everything was healing very well and that generally people thought it felt kind of “weird” when the drainage tube was removed but it was not usually uncomfortable. 

And, then it was out and over – and I never felt a thing.  Seriously, it is way more painful to remove a band-aid.

Then I felt silly, and that I had wasted way too much of a perfectly fine weekend being stressed about this.  Floating through my head was a quote that I first heard attributed to Corrie ten Boom, an incredibly brave Dutch woman, who along with her father helped many Jews escape the Nazi Holocaust, and later wrote a book about it called The Hiding Place.  “Worry does not empty tomorrow of its sorrow, it empties today of its strength.”

Recently, I have come across a variation of this quote attributed to 19^th Century influential British Baptist preacher named Charles Haddon Spurgeon, who wrote “Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength.”

I don’t really care who said it first - I just like the idea.  The problem is I have no idea how to embody it.  Writer Anaïs Nin described anxiety as “love's greatest killer.  It makes others feel as you might when a drowning man holds on to you.  You want to save him, but you know he will strangle you with his panic.”  Feeling like I am “strangled with panic” – is a good description of how I feel when anxiety takes over.

So I turn to the tools I have.  I write. I meditate.  I escape with hours of bad network television.  I am trying to rewire the default setting on my expectations. 

But in that re-write, I don’t want to dial back hope, which perhaps makes me a challenger to Mary Pipher, who claims to be the “worst Buddhist in the World.”

Pema Chödrön, a Buddhist Monk, whose work I admire a great deal, writes, “Hope and fear come from feeling that we lack something; they come from a sense of poverty. We can’t simply relax with ourselves. We hold on to hope, and hope robs us of the present moment. We feel that someone else knows what’s going on, but that there’s something missing in us, and therefore something is lacking in our world.”

Googling around on the word hope I came up with lots of interesting perspectives.  Sometimes it is described as a feeling, sometimes as an expectation.  The one that was the most interesting to me was the fact that the Hebrew word “yachal” which means “trust,” is sometimes translated as hope.  I guess it is all of those things, a feeling, an expectation and an intuitive sense of trust that things will get better. 

I often tell my students there are no “shoulds” or “should nots” where feelings are concerned.  What you feel you feel.  And today, on this first day of spring (vernal equinox) I am frustrated that the wind chill was -11 this morning and there is still snow in the yard.  But I do not feel anxious and I continue to feel hopeful.  I am good with all that.

Red cars and rollercoasters

I haven’t written much lately, because post surgery my life is mostly about pain management (drugs and ice) and drainage tubes.  Not the stuff of inspiration. 

I spent about 24 hours in an actual hospital room before they sent me on my way and Bob carefully chauffeured me home. My sister, Mary Jo, and her daughter, Marit, arrived at my house that evening.  Marit was only able to stay a day before heading back to the Twin Cities.  But it was fun having her here.  She is getting married in June, and talking about showers and weddings was a good distraction. 

Overall the physical pain is very manageable. On the old 1 – 10 scale, it rarely goes above a three.  But it is fairly constant – like a dull ache. The drainage tube sucks in more than just the literal way.  It is a Jackson-Pratt drainage tube, so there a little grenade shaped bulb at the end.  After draining what is collected there, I squeeze all the air out of it, so a vacuum is created that draws the fluid from the surgical site.  Besides the discomfort, it makes the left side of my chest look like a really creepy modern sculpture. Tube comes out on Monday.  While I am dreading the actual removal, I am looking forward to it being out.

After speaking to a number of my friends today I realized I am trying to keep myself knit together.  On a physical level I feel much like a slug.  I am moving slowly and get worn out very quickly.  I decided I needed a little fresh air so my sister and I went to the St. Peter Food Coop for an outing today.  That is three blocks from my house (we drove) and the entire adventure took about 25 minutes.  But that was pushing it for me and I needed to lie down and rest when I got home.  Emotionally I am riding an extreme rollercoaster – the type I would never go near in real life.  I feel fairly grounded and calm one minute, and the next minute I am plummeting straight down in a frenzy of fear and sadness.  And, a few minutes later, I feed the dogs, check my e-mail, and go about the normal business of everyday life.

Before my surgery this past Tuesday (a completion mastectomy, where they removed what was left of my left breast), a number of people asked me if I was ready for all this.  I didn’t know what to say.  How can you ever be ready for all this? 

On Sunday evening when Josh was on his way to the gym, he drove past a car dealership and spotted a Red Fiat 500.  When he got to the gym he called me and said, “mom, since you are not going to feel like doing so much after your surgery, do you want to go test drive a Fiat 500 tomorrow after school?”  This was not high on my list of “things I wanted to do before my next surgery” but because he wanted to do it, I said “sure.” 

And that is what we did.  I doubt there is a perfect ritual to prepare to lose a body part, but I think going for a joy ride in a small Italian car came pretty darn close.