For the Birds

I almost get giddy with excitement when I see lots of birds at my bird feeders or hear them chattering in the trees.  After this freaking long winter, sure signs of spring are most welcome.  I had told my brother-in-law, Bob D., about this and he told me I needed to clarify this for my sister because she would not believe him if he said something about it.  So, of course, next time my sister was over I did as instructed and clarified that I really, really like my bird feeders and watching the birds clustering around them.  She just kind of shook her head and said, “Birdwatching.  It seems like something old people do.”

I told her I didn’t mean to be morbid, but when faced with the possibility of not getting to be an old person – growing old took on a whole new positive meaning.  

There was an excellent article in the New York Times Magazine section today.  It was written by Peggy Orenstein and titled, “Our Feel Good War on Breast Cancer.”  It set out some sobering truths about propaganda around early detection, and explained about the vastly different types of breast cancer and how the prognosis is more based on the kind of cancer versus when it is detected.  This is not to say that early detection is not good, but there are some very non-aggressive cancers that don’t do much of anything but just sit there and that don’t require a ticket on the panic ridden cancer train.  And, of course, there are some kinds of cancer that even if caught early, are aggressive and require the whole arsenal of treatments.  I fall in that second category.

Orenstein’s article also cited some hardcore numbers. “Nearly 40,000 women and 400 men die every year of breast cancer.” (Lynn Erdman, vice president of community health at Komen)

One hundred and eight American women die of breast cancer each day.  Tough numbers but not necessarily numbers that frighten me.  It is my hope that these numbers motivate funders and researchers to find better ways of treating breast cancer and other cancers. 

Because of strides made in these areas in the last ten years my prognosis is excellent.  Herceptin (immunotherapy for HER 2+ breast cancer) and Tamoxifen (an estrogen blocker for Estrogen + breast cancer) are my friends.  

Orenstein, speaking of her positive prognosis after her breast cancer returned and was treated, says, “Again, that means I should survive, but there are no guarantees; I won’t know for sure whether I am cured until I die of something else — hopefully many decades from now, in my sleep, holding my husband’s hand, after a nice dinner with the grandchildren.” 

I love that image.  I too will not know if all I am going through is worth it, and if I will be “cured,” until I die of something else – hopefully many decades from now, in my sleep, holding my husband’s hand, after a nice dinner on the deck with the grandchildren.  Watching all the birds at the bird feeders. 

A New Numbers Game

I went to the Andreas Cancer Center yesterday to have a blood draw to monitor the effect of the first chemotherapy treatment, which had been one week prior.  I also wanted to have them take a look at my mouth since I have started to develop some mouth sores that are fairly common with chemotherapy. 

Dr. Singh came into the treatment room and was joking around a bit with all of the nurses when one of the staff walked quickly over to him with a piece of paper, and the only word I heard was “critical.”  The energy in the room shifted, and Dr. Singh walked over to my cubicle area, pulled the curtains then told me he was going to wash his hands and he would be right back.  In my typical in state of denial way, I was quite sure they were talking about another patient in the treatment room, until I heard someone say, “she’s local, she just lives in St. Peter.”  Still in the Dance

When Dr. Singh came back in he told me my counts had dropped to a critically low level.  Particularly the white blood cell counts, commenting that the lab technician could not find a single one.  He said this only happens in about 10% of the cases, and since this was my first treatment, they could not anticipate I would be in that 10%.   Future treatments would be managed differently to prevent this, and to address the current situation I would need to get some kind of shot each day for the next four days, and then they would check numbers again on Monday.  In the meantime, I was to take every precaution to avoid getting sick, which meant frequent hand washing, avoiding sick people and steering clear of crowds and groups.  I had been scheduled to go to physical therapy following the blood draw, but Dr. Singh said he would prefer I not go into that environment with my current counts – so that was cancelled.

Normally I ask for copies of all my lab work, etc.  I like to know all the specifics.  That said, I have operated on a “need to know” basis, and up to this time I had not felt the need to have a thorough understanding of my blood chemistry.  Now I do. 

I am not exactly sure what was in the shot that I received but I know it is meant to boost my white blood cell counts, and I know it is a nasty little bugger that burns when the serum is entering my body.  I go back to the clinic at three today (and Saturday and Sunday) for repeats of this shot. 

In the meantime, I am laying low, or lying low . . . grammar police, help me here. 

I don’t feel as much of sadness as I felt just a few days ago.  I think the word “critical” being bandied about me, kicked up my survival instincts.   As always I am having difficulty staying in the present moment.  I keep wondering what does this mean for the road ahead.  I have a couple of really important events coming down the pipeline – both involve crowds and I want to be at both of them.  A facemask may join my headscarf as necessary fashion accessories. 

It is supposed to get up to almost 70 degrees today, and that thrills me.   The next few days I plan to soak up some of that warmth and cheerlead for my bone marrow. 

Soften, soothe, allow

The day of my first chemo treatment, and the first few days after that, went quite smoothly.  I followed the instructions, took the anti-nausea drugs, and felt more of the emotional trauma than the physical trauma.  Yesterday, Sunday afternoon of day 4, I started to feel more of the effects of the chemo.  I simply felt rough.  Tired, achy and weak.  Afternoon through evening I ran a low-grade fever – hovering around 99.4 most of the time.  I had the oncologist on-call, give me a call, since any fever can be worrisome during chemotherapy.  He told me to just watch it, and if it went above 100 to head to the Emergency Room.  It never did, and so far today (day 5) there is no sign of any fever. 

A week ago, when I went to Rochester Mayo for the second opinion, I took part in a guided meditation offered to everyone in the waiting room.  There were at least 50 people in the waiting room, and three (a couple and me) of us followed the gentleman offering the meditation into the small classroom.  The man leading the meditation was one of the full-time chaplains at Mayo, and he had a lovely comforting voice.  I had the idea he was just reading a meditation that someone else had written, but that was okay.  It worked for me. 

He guided us to first find the spots where we were feeling tight and hard, and directed us to breath into those places and find the softness.  A simple, straightforward instruction that proved oh so hard to do.  Fear and anxiety seem to direct the body to “cast” itself – to make it immobile.  

The instructions then guided us to think of ways to soothe ourselves, encouraging us to place a hand near or on the area with cancer and essentially say, “there, there, this is going to be okay.” And the final section, counseled us to allow ourselves to feel whatever feelings we were experiencing.  Not to necessarily dwell there, but to acknowledge the feeling, allow it to be and then move on. 

It was a simple format, and I have found it useful in the days that followed.  This morning, for whatever reason, I am feeling more overwhelmed by my feelings.  Mostly I feel vulnerable and sad. I have experienced such a huge range of emotions ever since I began this journey in January.  More have been in the realm of fear and anger so the sadness I am experiencing feels different. 

The day I was at Rochester Mayo for the second opinion, was also the day of the Boston Marathon and the bombings.  A day or two later, writer Anne Lamott wrote a beautiful post that began by quoting theologian Frederick Buechner.  "Here is the world. Beautiful and terrible things will happen. Don't be afraid."

But it is hard not to be afraid, isn't it? Some wisdom traditions say that you can't have love and fear at the same time, but I beg to differ. You can be a passionate believer in God, in Goodness, in Divine Mind, and the immortality of the soul, and still be afraid. I'm Exhibit A.

The temptation is to say,  . . ., Oh, it will all make sense someday. Great blessings will arise from the tragedy, seeds of new life sown. And I absolutely believe those things, but if it minimizes the terror, it's bullshit.

Lamott goes on to say, There is amazing love and grace in people's response to the killings. It's like white blood cells pouring in to surround and heal the infection. It just breaks your heart every time, in the good way, where Hope tiptoes in to peer around. For the time being, I am not going to pretend to be spiritually more evolved than I am. I'm keeping things very simple: right foot, left foot, right foot, breathe; telling my stories, and reading yours. I keep thinking about Barry Lopez's wonderful line, "Everyone is held together with stories. That is all that is holding us together; stories and compassion."

I love Lamott’s writing on so many levels.  Right now I am just trying to follow her lead and keep things simple: right foot, left foot, right foot, breathe.  But there are moments in these current days when I can’t even do the right foot, left foot part of the equation.  I can only wrap up in warm and cosy clothing, and focus on the breathing part.  Today is one of those days. 

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.