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. 

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.