Resources

I have been thinking a lot about how I need to ration my personal resources.  I am used to having a much deeper well of both physical and emotional energy.  I can always tell when I am tapped out because I get weepy. 

Our arrival in Mexico went very smoothly.  However, we did get up at 3:15 AM, and left for the airport by 4:00AM.  We had about a two-hour flight to Dallas, an hour and half layover, and a two and half hour flight to Cancun, Mexico.  All of our baggage arrived quite quickly and we sailed through customs with no lines.  Outside of the airport the heat and humidity were substantial, but our van was waiting and it took less than a half hour to get to the resort.  It was less than a five-minute walk from the lobby to our room, but by the time we arrived I completely disintegrated.  I was too hot, too tired, and felt completely spent.  Fortunately, after about a two-hour rest in our air-conditioned room I was ready to completely appreciate the gastronomical riches waiting for us at La Marina Buffet (which the staff pronounces “boof-ette”.)

Friends and family arrived over the next few days and we slowly figured our way around the resort, made final preparations for the wedding, and found our individual rhythms for balancing food, alcohol, sun and sleep. 

I am never been particularly heat tolerant, and the chemotherapy makes my skin very prone to sunburn, so I did not spend any time lounging near the pools, and very limited time at the beach.  The wedding, on Saturday was at 1:00 PM and was right on the beach.  I was slathered in sunscreen, had on a large straw hat, a maxi-length dress and a thin white shawl over my shoulders.  It was more than toasty, but overall a lovely and memorable wedding.  

Sunday was father’s day, and with all the postings on facebook I found myself missing my own father a great deal.  My dad loved Mexico and loved Mariachi bands.  He would have enjoyed so much of this.  My niece Marit, who was married on Saturday, was the first grandchild and was very close to both my parents.  My mom left Marit her wedding rings, and those are the rings she wears today.  I felt the presence, and the absence, of both of my parents a great deal over the past few days. 

The trip home went smoothly, with our flight arriving back in Minneapolis at about 10:40 PM, and my sister, son and me arriving back in St. Peter around midnight.  Husband Bob stayed in the cities for an early morning meeting today.  

On the flight home I read the first hundred pages of Anne Lamott’s latest book, Some Assembly Required: The Journal of my Son’s First Son.  I love Lamott’s writing, and this one did not disappoint me.  It chronicles the unexpected chapter of her life when her son becomes a father at nineteen.  Of course, like all well written memoirs, it covers so much more than just that.  It is a thoughtful reflection on trying to accept how little control we have over the beginnings and endings of generations of loved ones.

On the page before the preface, was a poem by Susan Stauter, currently the Artistic Director for the San Francisco Unified School District.  It was a good poem to carry me through the trip home, and through today’s fourth round of chemotherapy. 

In the midst of the chaos

When the wind is howling I hear

The ancient song

Of the ones who went before

And I know that peace will come

Leaving on a jet plane

There are a million things that run through your head when you get a dreaded diagnosis like cancer.  First of all the big long term issues like your own mortality flood your awareness.  Then you try to process how it will impact your day-to-day life in all the smaller but still significant ways.  Once I realized my course of treatment would include a summer full of chemotherapy one of the things that upset me the most was the possibility that I would not be able to attend my niece’s wedding in Mexico.  I did not know how well I would tolerate the chemo, if there would be complications or even if you are “allowed” to travel in the middle of treatment.

While it has been no walk in the park, I have tolerated chemo fairly well and have not had any significant complications.   While Dr. Singh was quite fearful of the crime situation in Mexico he did not see any medical reasons for me not to go.  So – knock on wood, knock on wood, knock on wood – tomorrow morning, bright and early, I should be on an airplane in route to Cancun.

I will report back when slathered in sunscreen, sitting under a large umbrella, and drinking a virgin margarita on the beach.

Be honest, dig deep or don’t bother

“The writer of memoir makes a pact with her reader that what she writes is the truth the best she can tell it. But the original pact, the real deal, is with herself.   Be honest, dig deep or don’t bother. “  (Abigail Thomas, Thinking About Memoir)

I believe in the Abigail Thomas pact.  Be honest, dig deep or don’t bother.  I know this sometimes makes my writing difficult to read, and it makes other people concerned about my wellbeing.  But I want friends and family reading my blog to know that when I say I am doing well – I really am doing well.  I am not just putting on a positive front for others.  And when I am not doing well – I try to say that as clearly and honestly as I possibly can.

I can tell I am transitioning out of my bad days and into my good days.  I have a list of small indicators that affirm this for me.  I could stand long enough to brush my teeth.  Check.  I was able to focus and read the newspaper this morning.  Check.  The nasty glue-like taste in my mouth, and overall novocaine sludge feeling throughout my body is lessening.  The chemo ninjas completed this cycle’s assault on any remaining cancer cells (or any other fast growing cells) in my entire body and now it feels like the clean up crews are trying to purge the wreckage from that battle. 

All that said, it is still an act of sheer will power to take a shower and get dressed.  So far today I have not managed to muster the energy to check that one off my list.

Nadir

“When discussing chemotherapy side effects often you will hear the word nadir, mainly in reference to the blood counts, particularly white blood cell count and platelet count. Nadir basically means low point.”

While I think I am a few days away from my white blood cell count nadir for this cycle, there is no doubt in my mind that today I hit my emotional nadir.  It began with a very simple error in assumption.  Bob borrowed my computer to make sure the projector he needed to use for a power point presentation this evening worked on a mac.  (We are a mixed marriage  - he is a PC user and I hardcore mac.)  He is somewhat clumsy negotiating a mac, and accidently touched the microsoft word icon instead of the powerpoint icon.  The document I had been working on popped up, and when he went to close it he tapped “do not save changes.”  The problem was, I had never saved the document at all.  So one key stroke took away everything I had written over the past few days.  Normally, I “save” compulsively.  However, the last few days have been really, really, hard and I only managed to peck out a sentence or two before needing to retreat to the couch.  While what was lost was less than a page long, losing it sent me completely over the edge.  Those few paragraphs had documented my lived experience of the hardest days following chemotherapy.  While it is completely irrational, on an emotional level taking away my written record of the experience deleted the “proof” that the experience really happened.

I believe our memories are selective.  This cycle, these really bad days felt worse than the really bad days of the last two cycles.  But I don’t really know because I don’t have clear memories of those days, and did not try to capture the essence of those worst days.  I just wanted to survive them and move on.  And in the past, that is what I did.  However, this time, during the worst of it – I tried to write about it.  And that is what I lost.

I am not going to go back and try to remember or recreate that document.  It would feel forced and artificial.  I am going to do what I always do – keep moving forward. In the past it felt more important to document the better days.  I knew during the bad days I would need documentation that it all gets better, and the “proof” that there are good days – lots of them – before the next cycle straps me once more on to this freaking somatic amusement park ride.  And let me be very clear.  I hate amusement park rides.

Right now I am thankful for proof of the good days.  Today is only Tuesday but I hold on to my past experience that by this weekend, I will be feeling better.  During my lowest moments, I listen to Belleruth Naparstek’s recorded affirmations.  “I know there are times when I become worried, fearful, despairing, sad or angry and I acknowledge and accept what I feel as my inner truth of the moment.”  While there is a level of consolation in knowing things will get better, I still need to live in and through this moment.  And this moment is dominated by sadness and anger. 

When I realized my last document was really lost, I started screaming, yelling and crying hysterically.  It was one of those “straw that broke the camel’s back” moments.  In the past few months I have lost so much more than my left breast.  I have lost my sense of self as a strong and healthy person.  I have lost my ability to dream, make plans or feel confident about the future.  I sincerely hope this is my lowest point, my nadir.  It is no place I care to dwell.

The day after chemo #3

May 31^st is always an emotionally loaded day for me.  My parents were married on May 31, 1952.  They were two individuals from wildly different backgrounds who stayed together over many rocky years and were not only responsible for my being on this earth, but for giving me the complex personality that has served me well.  It was also 18 years ago today I experienced the end of my first pregnancy.  A day when the hopes and dreams for the surviving twin I was carrying, came crashing to an end with cramps and bleeding following Gustavus’ graduation ceremony.  And now today, two of my friends are in surgery joining the sisterhood of those who know it is more important to save lives than breasts.

Yesterday I had my third (of six) chemotherapy treatment.  My second cycle was similar yet less anxiety ridden than my first.  I knew, at least a little, what do expect.  The day of and a few days after the multiple hours at the Cancer center, I feel tired but basically okay.  I take a dose of steroids the day before, the day of, and the day after the day of treatment.  These steroids suppress any side effects but also make sleep more difficult.  Days three through ten I feel the side effects more acutely.  None of it is terrible, it is just all my normal body sensations are off.  I feel like I have a low dose of Novocain running through my entire body.  It feels a little thick and numb.  Food and even water are unappealing.  Yet I feel better if I have some food in my stomach.  I lose a layer of skin all the way through my gastrointestinal track.  I lose the top layer of skin on my tongue and roof of my mouth.  I feel better lying down, or at least sitting down.  My energy is very low and my mental processing is less acute.  I can look at photos in a magazine, but don’t have the focus to read a long article.

Then about day eleven I wake up in the morning and I feel more like myself.  I don’t feel quite as energetic as usual but I don’t feel any of the odd sensations of the previous week.  And, I feel immensely grateful and think, “I can do this.”  I get as much done as I humanly can, and enjoy the following ten days before heading back into the next cycle.  I keep using the word “manageable.”  While not pleasant at all, it is all manageable.  I use that word so frequently I decided I needed to look it up in a thesaurus and find some synonyms. “Wieldy, handy, controllable, practicable”- geez those are all hopeless.  I am sticking with manageable.

Which brings me back to the parts of my personality I inherited from my parents.  I often joke with my sister that it is completely unfair that I inherited both my father’s bad temper and my mother’s migraine headaches and rolling veins.  It is true my father had an explosive temper.  But I learned from my policeman father how to be a fierce advocate for myself and for others – and yes, this sometimes involves swearing like a sailor and fighting like a bulldog.  However, I also learned from my emergency room nurse mother how to hold the calm center when there is chaos swirling all around me.  Both of these skills have served me well in dealing with breast cancer and all the other unpredictable twists and turns life has thrown my way.

On May 31^st, I always grieve the loss of the first two babies I carried inside me.  Yet I think that experience taught me to treasure even more dearly the one child of mine that did make it into this world. 

Today I am directing my focus to my friends facing surgery and recovery.  They are strong women but sometimes it is okay not exhibit outward strength.  I am holding them in the light.  I am wishing for them days of quietness, and ease as they let their wise bodies heal.  

Earlier today on my facebook update I included an excerpt from the poem Today by Mary Oliver.  Here it is the complete poem.

Today

By Mary Oliver

Today I am flying low and I’m

not saying a word.

I’m letting all the voodoos of ambition sleep.

The world goes on as it must,

the bees in garden rumbling a little,

the fish leaping, the gnats getting eaten.

And so forth.

But I am taking the day off.

Quiet as a feather.

I hardly move though really I’m traveling

a terrific distance.

Stillness. One of the doors

into the temple.

Celebrating round #2

The first time I had chemotherapy, I had a slight allergic reaction to the Herceptin.  My arms broke out in an itchy rash.  For this second round, they gave me benedryl via my I.V. prior to the Herceptin.  Which worked very well, but also contributed to me falling asleep during the Herceptin infusion!  Which is why my last post ended rather abruptly.

All and all, this second chemo went very smoothly.  I knew a little more what to expect and was not so edgy.  On Friday, the day after my second treatment, two of my dear friends from college came down to visit.  Bonnie and Liz, brought lunch, meals to be tucked away in the freezer, and stayed and planted pansies and violets in two planters and pull weeds.  It was so nice to visit with them.  On Friday evening, Josh was inducted into the St. Peter High School National Honor Society.  I was happy I was able to be there for the ceremony, and really enjoyed seeing so many of his friends achieve this honor.  Yet another thing I like about having lived in the same small community for so many years – watching Josh’s preschool and kindergarten friends grow and mature into such amazing young adults. 

Yesterday was another full and rich day that went off without a hitch.  My niece Marit is getting married in Mexico with this summer, and prior to my cancer diagnosis my sister-in-law Mary and I had scheduled a shower for the bride and groom.  Fortunately the party had been scheduled at my brother and sister-in-law’s house, and my brother is a fabulous cook.  There were about 50 people from different corners of both Skip and Marit’s lives in attendance.  Most of people there did not know each other, but all seemed to have a good time. 

And today is mother’s day.  I am tired from yesterday’s events but still feeling okay.  The day began with a bit more excitement than I really needed.  Last night, Josh and his friends had decided to camp out at long time friend “Erkel’s” home in the country.  Josh had driven our VW Eurovan over there and was sleeping in the lower part of the van.  His friend, Aaron was sleeping in the pop-up top.  Others were sleeping in tents or sitting around the campfire.  Erkel thought he would play a little joke and put a very tiny firecracker on the back windshield wiper of the van.  It completely shattered the back windshield scaring the bejesus out of everyone.  Fortunately the shattering glass did not hurt any one.  This all happened about 3:00AM, and needless to say, Josh did not sleep soundly after that.  Tomorrow we will call the insurance company and deal with the outcome of all that. 

Knowing I would have a number of low energy days on the horizon, I requested a comfortable chaise lounge for a Mother’s Day present.  That was delivered on Friday.  I was surprised when Josh and Bob gave me yet another Mother’s Day gift of a beautiful Le Creuset deep covered skillet.  I can’t wait to feel well enough to cook some wonderful meals in that. 

So today I am just resting, and feeling very fortunate.  I am thinking a lot about my mom today.  This is only the second mother’s day I have experienced since she passed away.  I am thinking about my grandmother Juline, who died from breast cancer when she was 36 years old and my mother was only 13.  I am thinking about my cousin Rob’s beautiful daughters who are experiencing their first mother’s day without their incredible mother Marcy, yet another amazing and strong woman who died from complications of this disease.

I count myself among the lucky ones.  I am feeling blessed to be surrounded by circle of support and I am facing this disease during a time when so many advances have been made.  Be it memories or moments, there is so much to celebrate on this day. 

Pink "Hat" Box

I have not posted for a while, which should never be cause for alarm.  I have actually felt really good for the past week and was trying to take care of everything that required physical energy and clear focus, before my second treatment.  Which by the way, is happening right at this moment.  There is free Wi-Fi in the treatment room, so I decided to bring my computer this time. 

To bring everyone up to date, the nuepogen shots, while not pleasant to receive, worked like a dream and my white blood cell counts rebounded.  As predicted, I felt considerable better week three and was happy to attend to the non-cancer things in my life.  Concurrent with my improved health was the belated arrival of spring in Minnesota.  This was undoubtedly a contributing factor. 

Since I was feeling better, and 95% of the inflammation related to my mastectomy was finally gone, I went to The Silhouette Shop in Mankato, to be fitted for my prosthetic breast.  The person, Denise Southwick, who did the fitting was absolutely amazing.  I selected a handful of the specialized bras that have pockets to inset prosthetic breasts.  Once we narrowed the selection down to a few that fit well, Denise helped me insert a prosthetic breast that she visually estimated was my size.  It was incredibly close, but not close enough for her discriminating eye.  She selected a second one, and this one was perfect.  Before she was completely satisfied, she did a number of measurements to confirm the symmetry of my prosthetic breast to my remaining breast.  I was thrilled with the final result.  It is a very good thing I have family and friends who understood when I said to them, “ I want you to admire my left breast.” All agreed the final result was more than satisfactory.  I aslo found it very entertaining is that my prosthetic breast (or what I call my “fake boob”) came in its very own little pink hatbox.