Archive for May, 2012

Remembering Irene

05.29.2012

My blog has connected me to people all over the world. We develop friendships around common issues: cancer, treatment, grief, and loss. I met Irene when I was in treatment and did my Baldacious Babe Contest. Irene appreciated my sense of humor and was quick to join in the fun.

 

Irene lived in Switzerland. She blogged about her Stage IV breast cancer meinbrustkrebs.blogspot.com. I don’t speak German, but I loved that one of the categories for her cancer blog was “absurdes.” This speaks volumes about her perspective on things.

Her last post is from the May 5th. She was writing about a  holiday with some friends some days ago in the Provence in the South of France. She had a great time, but already a lot of problems with her stomach when eating, saying it was about time to contact her care team.

This text was written by Beat, her husband, and is the last entry on her blog. It was translated from the German by Katrin S.

You are not here anymore. Now it is on me to finish your blog. This is not what we planned! I can imagine your eyes twinkling, hearing my objections. I can hear your pointed remarks.

Tuesday, 1st May 2012

We are setting your emergency bed. You haven’t used it that often, I do remember now. This bed is now your “nest”, you are saying. I hope you will be fine after some days of rest. I am cleaning up our balcony and preparing it for the summer. You are very happy about the new look.

It is weird to sleep alone. You, on the other hand, are never alone, being in good company with our both cats. They seem watching over you…

Wednesday, 2nd May 2012

You are calling your care team from the oncological unit:  From now on you get a smaller dose of Tykerb; plus a visit on Friday. We are relieved about that. I am working while you are in the same room, sleeping in your nest. It is nice being with you. Everything’s quiet.

Thursday, 3rd May 2012

I will deal with tonight’s gathering of our friends B. and J. alone, you are insisting on that. Tomorrow evening’s invitation at our friends P. and U. is postponed to later. I appreciate the relaxed evening with B. and J. It’s good to be away, but the way home goes far to slowly!

When I get home, everybody is sleeping.

Friday, 4th May 2012

It is a wonderful morning.

Taxi driving into the oncological unit of the gynecological hospital in Triemli. A good-humored young Muslim with a big bushy beard is driving. We could be in Cairo…

Dr. St., is explaining us how to proceed. We now know, that the liver is the main problem. Tykerb is stopped right away. You should strengthen and recover first. Ms. B. is shepherding you and me. We feel safe and in good hands. You look satisfied. You get a dose Zometa.

Photo: Irene Gattiker, 4th May 2012

Afterwards we go to the tram station by foot. We are strolling slowly home, enjoying the blue sky and the sun. You say your body is like a big construction area now, where here and there work is done; but the house will never be finished.

Saturday, 5th May 2012

I am leaving early for work. As agreed I am back at noon. You take a hot chocolate with bread before going back to your nest. I think your skin starts getting yellow. Of course you want me to find the shade of the yellow with the colour charts. Pantone 156 hits it quite well.

You are still so tired. In the afternoon I am preparing the summer canvas chair in our big room, so you can lie there also. Risotto with asparagus and strawberries. Than you go back to your canvas chair and we are listening to music. While Dylan’s “Blood on the Tracks” plays, I am just crying.

Tomorrow you will be better. We have had this before, we will make it. It just needs time etc etc.

I am suspecting something may be different, but I don’t want to know. But you already do.

Sunday, 6th May 2012

A tired Sunday, also for me. You are sleeping sometime in the big room, sometime in your nest. I am looking forward to the dinner I have planned. So I am spending the afternoon in the kitchen.

In the evening you are eating just a tiny little bit. You go back to your nest.

Monday, 7th May 2012

You are so weak. You are sleeping a lot. I have to go to work.

I am not feeling well. I am always thinking about how you are lying at home. At noon I go home right away. Hot chocolate with bread.

In your eyes I can see a hint of yellow. Your nostrils are bleeding. Your fingers are red, because you scratch your nose all the time. I ask you if we should go to the hospital. You refuse.

Cleaning postponed things: you have to sign our tax bill! It is difficult for you to sign it. I am getting loud: Pull yourself together! Your normally beautiful handwriting is spidery. I have the feeling something bad is going to happen.

You are not very hungry and want an omelet. It fails. I am becoming desperate and angry and throw the burned omelet into the garbage. I am barely managing the scrambled eggs, decorated with strawberries and creme fraiche. You say: It is not nice to live like this.

I am out of my depth. I have to admit: this is the end. I am feeling helpless and totally over-strained.

I barely sleep, listing to your breath. Every time you are groaning or turning I am rudely awakened.

Tuesday, 8th May 2012

You are very weak. The breakfast (hot chocolate with bread), you barely manage eating it. Back to the nest. I call the oncological unit and describe the situation. They prepare a room right away. I call an ambulance.

You absolutely want to have a shower. I am putting a chair into the shower stall, swearing. Pighead. I am holding you and together we are tumbling under the shower. I am swearing. You barely can stand up from the chair. Finally I can make it to put your clothes on and bring you to the big room. There you are curling into the canvas chair, dozing. Directly one of the cats is laying next to you. I am waiting for the ambulance. The bag with the clothes was packed by you some time ago…

The ambulance women are putting you on a carrying chair. You have such big eyes. When questioning things you’re just nodding.

And when you finally are in the hospital bed, you slowly start relaxing. Hardly breathing. Everything will be fine, I think, you are safe now.

In the afternoon Dr. St. confirms what I was suspecting: your life is coming to an end. She is explaining what is going on now. Crying, I am telling it to you, you already knew. Also Dr. St. is talking to you and saying goodbye.

In the evening I go home just to feed the cats, have a shower, cry, pack my clothes.

Your nest is empty.

Back at the hospital. Next to your bed, I am putting mine together. I am installing myself for the night in “our” room.

I cannot sleep. I am crying, listing to your breath. I have to look at you again and again, holding you, kissing you. In the break of dawn you are with me for a moment, your eyes are looking at me. I am asking, if you are afraid. You are shaking your head. I am asking, if you have pain. You are shaking your head. Than we are kissing really solidly, you are here. Then you are drifting away.

Wednesday, 9th  May 2012

Your mother is watching you in the morning and I am going home. Feeding the cats, showering, doing the laundry, sobbing.

Then back to the hospital. You are sleeping, turning from time to time, it seems you are quite relaxed.

In the evening your friends I. and P. are taking over the watch and M. is also coming. I am feeding the cats and looking for the clothes you are going to wear when you die. It will be the clothes and shoes from our wedding. (Katrin adds: it was a boldly patterned, very colorful, simple, beautiful dress)

When going back to the hospital, the heavens are cloudy. You would have liked it. I am calm. I hope it will be our last night together.

Your friends are welcoming, informing me how it was going. You are breathing heavier than before. The attendant Ms. W. is explaining, what is going on now and what her duty will be. P. is coming back around 9 pm. I am happy that I am not alone. Whispering, we are talking about this and that. Slowly, it is getting dark in the room.

As you were still heavily breathing around 10 pm, it is time to call Ms. W. She is asking me, if we are ready for the last stretch.

We are.

Ms. W. explains in detail, how to go this last distance together. She is radiating so much love and deep respect, that I am feeling safe.

I am holding your arm, am very close to you and just telling you about the times we were hiking on the beautiful island Naoshima. I am telling you again and again, that you can go, that everything is ok. At around 10.45 pm your breath is getting lighter, irregular. You open your eyes a little bit, but there is no more sight.

And then – at last – you are not breathing any more.

It was exactly how you wished.

I keep you for a while. We are saying goodbye to each other. The doctor certifies the death at 11.05 pm

Then I am alone.

Now they will wash and dress you. I don’t want to see that.

I am going to the lobby to make the most important phone calls. Your friend C. is coming right away. We are waiting together. It is over. The presence of C. is relaxing me. I am releasing and feeling a big exhaustion.

Then finally we can see you.

My love, you are so beautiful.

C. is taking me to her home. We have a beer together. I am sleeping in a nice, strange room.

Very early I awake, there is fog laying over the town.

My dearest, so this is how your story ends, our common story. You always said you had a great life with me.

A small part of your life, our life, is laying here on this blog, strung like a pearl necklace. We can again and again read and remember. Crying, astonishing, laughing.

You arrived, I am entering reclaimed land. Caught in a net that you tighten so carefully.

Thanks, friends, for everything.

It was exactly how Irene wanted it.

Friday, 11th May 2012

Venus glows on the evening sky, Jupiter is gone.

My love,

some weeks ago you wrote into your diary:

I am neither here

Nor there

Not where you are

I am just

Gone…

I miss you so much.

Your Dearest

Beat

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Posted in End of Life | 12 Comments »

Not the Post I Wanted to Write

05.20.2012

I imagined that after a week of resting and recovering from my last surgery, I would compose a blog post full of gratitude.

In my mind, I played with how I would balance expressing the humble appreciation I feel for all that has been done for me and my family over the past 2 years, 7 months and 11 days since that awful day I received my diagnosis. I fretted because I knew may miss some of the generous gestures that may have escaped my memory or notice.

To be sure, I am grateful. Unspeakably so. I will spend the rest of my life graced by the knowledge that friends near and far, colleagues, kids’ friends, neighbors, classmates, fellow congregants, community members, mentors, acquaintances, and even strangers came through with uncountable kindnesses.

I want to tackle that writing problem. It seems gracious and puts a nice bow on things.

But I am overwhelmed by a less warm and fuzzy set of issues.

I should know this emotional terrain by now. Whether the end of chemo or radiation or whatever, these finish lines in treatment seem to vanish like mirages when I actually close in on them. They have always been fraught.

We focus on them, fantasize about how they will mark a fresh start, a new beginning.

They may be markers, but they do not operate so cleanly. In reality, we are damaged, compromised, and our lives are filled with incomplete and long delayed projects. Chaos has entered our lives. Where do we begin picking up the pieces?

Photo by Micke W.

There is no pause button in my life. Everything rolls on, even as I try to heal. My work projects move forward, with crises, deadlines, and important decisions. My children and husband need me –– there are carpools to coordinate, conferences to have, problems to solve, finances to refigure.

I want to take stock of the damage these past years have brought, to clear out some of the mess so that I can figure out where to begin anew.

Photo by Xorlaryn

But, once again, I am lost.

Where do you start?

How do you find the space to deal with the chaos cancer brings?

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Posted in Survivorship | 39 Comments »

Private Body/Medical Body

05.07.2012

I haven’t read Susan Gubar’s new memoir about her terminal ovarian cancer yet. The famous literary critic explained that she was motivated, in part, by a problem that Virginia Woolf’s generation of women writers had failed to solve: telling the truth about the experiences of a woman’s body.

I resonate with this motivation. As I explained in an early blog post, I have always found the silences around our bodies to be a strange form of culturally mandated dissociation. We all have bodies. They all have feelings and experiences, but we are somehow raised that it is impolite to discuss them.

The loneliest moments I have ever experienced have been in unanticipated, unrecognizable corporeal suffering. Somehow, putting words to these sensations and having others recognize them makes me feel less alone by acknowledging an important and essential aspect of our common humanity.

So here I am, having another intensely bodily experience. After two years and seven months since my diagnosis, my cancer treatment is coming to an end. My Medical Body is becoming a Private Body again.

Let me rewind a bit for you and explain. Early on, it became clear that Medical Bodies are not granted the normal respect granted to healthy bodies.

During my first diagnosis meeting with a team of doctors and residents, I heard the information about my disease: staging, tumor type, treatment plan. Needless to say, I was in shock.

Then the team wanted to “palpate my tumor.” I was to remove my hospital gown, stripped from the waist up, and sit on the exam table while, one by one, the doctors basically felt me up. I caught eyes with my husband, as we were both struck by the new bizarro world we had entered. This activity would have seemed inappropriate and lacking dignity just days ago. Now I was expected to endure this as a procedure, allowing the doctors to individually assess the location and size of the cancer.

This was only the first of many insults to my body. They are too numerous to list, but I will name a few to give you a flavor.

  The prolonged pain after my port placement that my surgeon responded to as “no big deal.” (I later fired her.)
•  The way some nurses abruptly flip on lights in the wee hours during a hospital stay so that they can “take your vitals.”
•  The way your bald head causes some cold-hearted people to shun you because you represent disease and mortality.
•  The way some chemo nurses will “push” your infusion at the end of their shift so they can go home, even though it hurts.
•  The way strangers simply appear without introduction when you are half naked on the radiation table.

 

As my reconstruction has progressed, the procedures have gotten more intimate.

Really. It is  not possible to be any more flat-chested than this.

First, I went from my truly flat-chested body to one with some roundness. Then, I switched out hard tissue expanders for softer implants.

Now, the most intimate surgery of all is on deck:

Nipple reconstruction.

It is so so private to talk about nipples. I can barely stand it.

But the awkwardness also marks a welcome return.

My Medical Body is becoming a Private Body again. And I am so thankful for that.

 

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Posted in Survivorship, Treatment | 24 Comments »