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. 

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.