Category Archives: friends

the sky is empty

“I talk to God but the sky is empty.”
~ Sylvia Plath

Ge’ez, Sylvia Plath is sure a downer!

When I was little, I thought my grandparents lived in heaven, not because they were dead, but because they lived in Arizona (a stretch to see how I got here, I can imagine, but bear with me)….

I came to visit them with this kind of sky:

From this kind of sky:

So, when we went to visit (usually in early summer) our plane went up above the clouds, but never came back down through them… so, they must have lived in heaven, right? Please, also note that this was also around the time I was very saddened that Zeus and the pantheon of gods was not “real” and that my mother found me once, kneeling in the front yard praying to the moon-god. I was a wildly spiritual child.

Considering my family did not practice any real form of faith as I was growing up, they were Protestant in Roman Catholic countries after all – and any Protestants that lived where we were tended to be evangelical missionaries and not the most fun to be around – add in that we were considered to be “converted” and there were all those heathen Roman Catholics and indigenous cultures that needed to be saved. 

Many people tell you to lean in to your faith in trying times like this. It is amazing how much you seek something out, something that requires faith. But looking for something that is comfortable, that does not mean I must have a rebirth in any fashion, that means I don’t have to believe fossils were put on earth by satan to lure us to his evil ends,  something other than the spiritual connection to the cancer I got is because I have mommy issues, something other than I am not godly and got cancer because I am being punished… 

fuck – fuck – fuck – fuck

FUCK

How do you find faith in the midst of such fucking insanity.

Notice that is not a question, though it probably should be.

Anyway.

I learned that I had a sizable chunk of muscle removed with my last surgery. Granted, it was not the breast surgery removal of days of yore when women begged for a radical (nay, they wanted uber radical) mastectomy – the kind that took out muscle and bone (think ribs and clavicles). I’m missing 2 inches of chest wall muscle… and I’m still in disbelief… faith.

The way humans think is sometimes shocking to me. BUT, and it is a YUUUUUGE “but”, I get it. While my head understands that if treated correctly a lumpectomy has the same results as a mastectomy and you heal faster – but WTF does treating something correctly mean? My tumor was muscle adjacent, so does that mean that one of those a$$hole cancer monsters escaped and is it hiding somewhere? Somewhere that chemo and radiation can’t find?  Faith.

This is where finding faith again is crucial – but it is so freaking different this go around, faith that is.

If you are prone to that which is beyond the physical and don’t judge, I can share how I am re-learning how to lean in to faith again.  The thing is, I will most likely appear a heretic to you.

The one thing I know, is that I don’t think faith is about re-birth (that concept is what caused me to abandon faith before)… if it is for you, that is awesome – but I don’t buy it one effin’ iota.

I, beautifully enough, am finding this process of rediscovering faith kinda cool. and a bit painful.

It is especially nice since there is a disquiet in this process, of being a person diagnosed with cancer. It was present the first time and it is present again this time.  The subtleties of it that I experienced the first time is magnified, but both of my cancer experiences, so far, are incredibly similar… at least internally.

Because my first round was stage 1 and caught super early and only required surgery it was subtle. I felt like a fraud of a cancer patient because phht, it just needed surgery. People (most of them), aside from the time during the surgery put me at the bottom or low-end of a cancer continuum (that was practically equated with being cancer free).

In this round, where I am currently listed as stage 2B (and probably only because they did not take out more nodes and we will see if that changes after the next battery of test results come in), it is still sufficiently low on that continuum that I still feel like a fraud (though only less so because, after all, it looks like I am getting chemo and radiation this time) and the news about the cancer itself has just gotten progressively worse. Many of those same folks from my first experience are still like “well, you aren’t dying”.

I am adding silently  in my head; “that I know of” because I am still waiting for more tests and results of tests.

No, I am not dying (well, at least I don’t think so, but as I said… I will have a more definitive answer after I see the results of the next test). Trust me I celebrate that!  I am not healthy, I have a chronic disease that gives me (according to my radiation oncologist) an 81% 5 year survival rate (though this varies depending on the sites with such data). Yes, 81% is super awesome, but before this all went down I was with most others and had the general average population of a smidgen over 98% . A 17% drop in my life expectancy is still a crappy thing to have as a part of my life.

Trying to balance a good attitude with crippling doubts is a strange place to be.

I struggle. The struggle is real. Not because I have a Christian need for an after-life – but because I want to be more than just a life form – I want something divine to be a part of this experience, I want to lean in to something when I am so riddled and consumed with anxiety. A set of rituals that I can be a part of, a community where I feel like I belong. IN my head I often say to myself, I just want to be loved through this.

I read about Sherman Alexie today, something that I struggled with, but which spoke to the spiritual little girl in me that the unseen world is there for those that listen.  (the story is here).

I have found great comfort in so many people in my life, women and men – willing to be a part of this process with me.  I hate to lean on them, how do you answer the unanswerable to someone like me desperately seeking?

 

 

Invincible summers and calculated acts of kindness

“My dear,
In the midst of hate, I found there was, within me, an invincible love.
In the midst of tears, I found there was, within me, an invincible smile.
In the midst of chaos, I found there was, within me, an invincible calm.
I realized, through it all, that…
In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.

~ Albert Camus


It was late on December 20th, 2014 and I was still recovering from my surgery.   I read an email from my friend Gail in which she asked if the Junior League of Phoenix (JLP) would be interested in hosting a movie screening. Gail works at The Arizona Partnership for Immunization.


It was this movie screening:





I watched the trailer.

I called her to talk on the phone.

I pretty much told her that I didn’t know but I would find a way.  We talked about how I could manage this in my capacity as the member training committee chair and we came up with a plan. The next morning I sent out some emails to my Team Leader in the Junior League and my co-chair. Both were supportive.  Gail and I discussed venues and what options we had. We decided that my cousin, who is Lead pastor at Scottsdale First Church of the Nazarene, would be a good person to approach. So an email went to him. I received immediate replies and all were supportive. 

Here I am 2 months later. The JLP team lead I serve under, has allowed for this to become a bigger deal within the JLP.  More partnerships have developed and are included below.

Our goal is to provide one large movie screening with a panel that is targeting about 200 viewers. 

If you are local – please save the date:

Date:
Thursday, April 9th 2015

Location:
Scottsdale First Church of the Nazarene
2340 N Hayden Rd, Scottsdale, AZ 85257

Time:
 5:30 – 9:00 pm / Movie starts at approx 6:30

Tentative Agenda:
Sign in opens with a meet and greet: 5:30
Movie and topic is introduced and screened 6:30 
(movie is 80 minutes long)
Panel discussion at end of film
closing meet and greet


Community Partners:


Revisiting 7 and then 8 – and perhaps a dash on 9 – Find the Beautiful

Revisiting 7

I suppose my last post was a bit premature, though it was true. It is amazing how something gentle can shift everything, even if it is only temporary.

After my post, I went to a meeting for an organization I belong to. I expected to get lots of hugs and inquiries about my health and my status. I was looking forward to thanking people in person for their kindness, but felt shy about the possible attention.

The hugs were nice, the kind words and gestures were appreciated. I was glad to have gone and it was not as much of a burden to my shy side as I thought it might be,

But at the end, as I was walking away.  One of the friends who was there often for me asked me how I was and I replied with my usual. I am good, lots to be thankful for, one day at a time. She grabbed my arm and said lets sit and tell me what you mean by this one day at a time thing? 

I was stunned, she had latched on the the subtle nuance of such an expression and knew that my words were far cheerier than I felt. 

So we sat down, and I tried to explain that navigating the whole thing is complex. Yes, I fully see that there is so much that is good but that there is still the tough that needs to be dealt with. Being told you have cancer is more complex that I had thought, especially given the provisions that no chemo or radiation is needed, like those somehow would allow (key word here is allow)  someone to feel like shit. Please don’t think I am trying to diminish chemo or radiation and that people who have to go through that are somehow exception in some regard… because they actually are exception. What I feel like I am missing is permission to grieve this process and that my grieving is allowed to be more than just sad.  After I feebly tried to communicate these ideas to her, I just looked at the hands in my lap and said, I want to be allowed my pity party, I just don’t know how.

She touched my arm and said you are allowed a pity party and I want to be invited, lets go get some wine together soon.

It was so beautiful being allowed to feel this way instead of being held to strict gratitude. My heart filled with something, I would hope it was grace. 

I am not sure she knew what I was talking about or understood what I was trying to say, but she asked and then listened… holy moly… what a gift. She asked, she allowed me to tell her something closer to the truth about how I am feeling, In a world dependent on daily platitudes (“How are you?” – “I am OK”) it was mind altering to pass that realm and move in to more of the brutal truth.

It is part of the dynamic between celebrating that I don’t need chemo or radiation or that my tumor was so freakishly small AND the whole truth in that it was fucking cancer and it robbed me of some things that I held dear. I am grieving.




I don’t think I am headed to deterioration. I know I will be fine, but this is a part of what has happened and is happening to me. I own it. 

“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.”  ~ William Shakespeare

Then 8

After the sincere gesture of my dear friend, I felt more lighthearted yesterday. It was a busy day, work with extra duties, rush to help Squink finish his homework, a school meeting for an exchange program, and cub scouts.

I was too busy to notice much more than the heaviness of my surgery site.

A dash of 9

We all woke up early, and in good moods. I even served Squink some oatmeal and let him eat it in bed. On my way to the kitchen, I noticed how amazingly pretty my orchid plant was. 

It was beautiful. 


Squink was beautiful. 



My family was beautiful. And somehow everything else seemed less important.

Life is beautiful – 6 & 7

Yesterday was tough, it is a tough spot right now. 

In my attempt to find the beauty, I failed… I mean, I had that poem, but I really found it the day before… and the rest seemed average and even hard.

It all, life, feels sorta like that – hard. 

I feel completely helpless in some ways (some very new ways) because I am just in a state… angry, mad, desolate to name but a few and all of them in one big huge swirling mass of emotional baggage.

I have no patience for this kind of nonsense. I have too much to do.

And, people keep calling me back to earth and reminding me that my behaviour is inappropriate. Which adds to this feeling of mixed mass emotions swirling and boiling and festering. Shame, I suppose. I am better than being an angry person.

I have moments of average, and when I see my son or husband I can claim joy. But that seems so selfish, in a way, to allow my son and husband to be my bringers of joy… what a HUGE burden to place on them. Guilt, I suppose. 

I am trying to remember to breathe, to mediate, to pray… but the words that come to mind when I do this are hard, and angry, and as my family reminds me… inappropriate.

I have and see so much to be grateful for, but these crazy emotions are so difficult to manage. 

How does one throw themselves a gentle pity party?


So let me conclude by stating that I suppose that the beauty I was able to find is that (#6) I am alive and (#7) I have people who love me. There is comfort in that. But, there is a tinge of insincerity in my heart with these right now. impatience, I suppose. 

The kind of beauty I want most is the hard-to-get kind that comes from within – strength, courage, dignity.  ~ Ruby Dee  

Find the beautiful

THAT

Find the beautiful

Yes, that…

is my theme for this year.

Though we travel the world over to find the beautiful, we must carry it with us or we find it not.
~ Ralph Waldo Emerson  


Finding the beautiful… it is very present in the external. 

But as I navigated just how ugly it was to go through this cancer thing, how easy it was for people to forget that it is my battle, and I had to find myself repeatedly trying to forgive… I lost my place. And I was so hurt by people that I am close to (who are ashamed of my diagnosis, who couldn’t/can’t talk to me about what was/is happening, who took things from me with out asking, who made things harder for me….) that I forgot to stop and find the beautiful.

So, fuck the folks who take away from this… they can live with their choices.

And I am so lucky, because I have people in my life who can help me do that. So, I have to let them in and help me see what I need to see.

I,  am so excited. Because, you see, this year, 2015, I get to find the beautiful.

Yes, that…

is really my theme for this year. 

holding the darkness at bay

So, after feeling a down due to yesterdays ramblings and self flagellation I find I need to pick myself back up.

The other day someone came to me and asked how I was. I told her that is is a day by day process. That I feel good, that I am grateful for so much.

She went on to ask if I had experienced any dark moments, any depression, and tears. She added that her sister is a doctor and had told her to expect me to get to that point at sometime.

I cried when I got the first message. there is something about being told to call an oncologist that puts a certain indescribable pressure on your heart. To hear it while alone in an office, is hard because it means that you have to call people and share the news – and I will be very, very honest, that I was tempted to not tell anyone. Though I imagined that my husband and mom would have been extremely upset with me had I gone this route – in spite of that though, I can’t tell you how tempted I was.

I even called the oncologist first. I called my physician back and asked for a copy of the pathology report we talked about the long wait until my oncology appointment and then what the report meant in terms of what was happening inside my body. I went and sat by the fax and waited for the report to arrive (he was sending it right after we hung up). I got it and sat in my office, reading (memorizing) and mulling the news, tears in my eyes. I dried them, and decided I had to call my husband and so… I called my husband and told him the news. He was devastated (he had been a young boy when his mother had gone through two cancer diagnoses, I think that what was happening to me brought all those memories back) and I had to be strong and reassuring. After I hung up, I sat in the office some more, tears in my eyes again. Bracing myself for the call to my mom. She was walking into a meeting when she answered. I heard that stop in her voice. It was the same stop when I felt when I had to schedule an appointment with a hematologist oncologist for Squink after he was born.  Granted that was just for some jaundice we did not seem to be able to get rid of, and I knew that it was the hematology part we were seeing rather than the oncology part, but still – it isn’t something you want to deal with as a mom, your babies should never see an oncologist, that should be the rule.

So that was a quick conversation and I sat in my office again, a sense of “why me?” prevailed. My boss who had gone through that cancer route walked by and noticed I was upset, came in and I shared the news with her. After that, the next 24 hours are kind of a blur. I know I called my dad, and he was probably the hardest one to tell… but only because I had no idea how he would react, and he has a tendency to avoid bad things and go on and pretend as if they did not happen so the idea that he would ignore me in this was something I considered highly probable. I only remember that at some point by the end of that night, I was sick of talking to people. Wait, I love talking to people what it was is that I was sick of re-telling the story, the news. I just did not want to have to say that damned word again.

That has been the darkest point so far.

The days following are still a blur. I talked to my siblings, texted with Prima. Made arrangements for all the responsibilities in my life that would be put on hold. Sent out a group email to women who I adore. Friends put me on prayer lists, and I got through the interminable wait until that appointment. Once I saw the oncologist, it felt so much better, because there was a plan. I knew what was happening and it felt good.

I would even say that I was a bit jubilant the day before my surgery, because that mass of mutating cells was getting removed.

I was in the hospital almost a week, determined that this whole thing would not bring me down. I have managed to stay positive through the rest, even that horrid backslide where, through projectile vomiting and other effluvia, fever spikes and chills all intertwined with a general sense of feeling horrid, I lost over 10 pounds, got dark circles around my eyes and began to lose hair. I was still in a good place.

I have these moments that seem to want to step in to those dark shadows; when I noticed that there is an area near my incision is numb (normal, but a strange feeling), talking to someone else who has gone through this process evokes some teariness, after time spent wondering if I am avoiding dealing with something, being told I hurt peoples feelings all brought forth some form of gloom to my mindset.

Thankfully, they are able to be beaten back.  And I think that is my job right now.

More thoughts and a tale from my misspent youth

Reflection
Something I do a lot of right now.
As I watch, feel, and notice my body heal from a pretty brutal surgery… I reflect back on my life.
What is so amazing to me is that I have such a wonderful group of people here in my life now. 
A husband who waited on me through the surgery, held my hand, brought me food, made me eat when I did not want to, bought me more thermometers than he should have had to purchase for me as I lay in bed vomiting with fever and chills and consistently losing them to the depths of my mattress and covers, who rinsed the vomit bowl so I could have a clean bowl for the next round, massaged my neck that was sore from throwing up, is waiting patiently for my body to heal, fed me, clothed me, monitored me while I showered in case I passed out… crap, the list of things he did [is doing] for me is too long to even recall… I just know that I could not have gotten through the last few months without him. 
Then there are the folks that helped arrange food deliveries, delivered food, send cards, visited, called, sent a text… I am humbled by all of these things. 
An aunt who fought against her ingrained instincts and took care of me as best she knew how when my husband couldn’t stay with me.
My mom, who took time off and flew to be with me and watched her first baby sick and vomiting and trying to recover; held her hand, rubbed her brow, made me smile and provided those moments that induced healing that only a mom who loves to mother and nurture can give.
Friends who made sure I felt loved and fed, acquaintances who sent notes and some who even made sure I was fed… they came out like a force field and I was unprepared for the support.
I did not expect any of that, support that is… from anyone outside my immediate family. 
I am not sure why. I tend to keep to myself… I have been deeply burned by some people I thought were friends, so I tend to keep to myself and not talk to many folks. So, when I got the “NEWS” I had to let go, I needed help, I need a group of people to have my back (and not throw me under a bus without a chance to tell my story) and they came out of the woodwork, and I was touched, and am still touched, humbled.. tears are in my eyes now, as I write.
Even friends who I exchanged superficial texts with stepped out and were present to me. Near strangers offering so much more than good wishes.
The world is truly a magical place filled with so much good. I can’t wait until I am free to frolic (without pain) and pass on that kind of goodness… for now, I heal, and am blanketed in gratitude that I have a tribe whose large size I didn’t know.
~ ~ ~
I was driving and reflecting on what good things have happened to me in my life over the years and  in a brief flash of mental inner dialog that occurs in seconds I noticed that I drove by a building that once housed a flower shop in the 80’s when I was in high school and which was made famous by a stop by then president Reagan who went to buy flowers for his mother-in-law who lived up in some super fancy “estates” near my house.
I remember that visit, he was new to office and it was a stop that made the local news. The other funny thing is that night some friends and I went to visit a friend that lived in those “estates” and was a neighbor of Nancy’s mom… how do I know,, because of the plethora of secret service who hung out in the neighborhood. I remember a group of us running to the car from my friends house and the agents getting a little “jumpy” – but those were different days. Now we would probably be shot, then we just got stopped on the way past and told to behave by men in dark suits that wore sunglasses at night. 
I smiled at this memory as I drove away from that building that once housed the famous flower shop; I loved high school. I had friends whose company I enjoyed. I had good times… I was a little bit of a rebel, but I had a heart of gold, and the naivete of a child.

update – the last 4 weeks have been interesting

So, what an experience these last few weeks have been.

The surgery went abut as expected.  A scratched cornea in the hospital.
The final diagnosis was the best to be expected. No chemo and no radiation.
Big blessings.
I took a nose dive after I got home… lost over ten pounds in about 24 hours.  
Family took care of me. Friends feed me. I felt/feel deeply loved. 
I have been torn down in a way that has built me back up.
I am exhausted, tired and eager to get on with life.
I even drove once!

Day 17 – 40 days of writing – procrastination, anger, and trying to let go

I have had my paperwork to fill out for my upcoming oncology appointment for over a week.


It was on the floor for several days, then I put it in my work bag to take and complete on a break, but it still is in there. It is not filled out.

I have to fill it out this weekend. 

I want to avoid this whole thing. It is all encompassing. It permeates so many things.

***

An email sent to explain why I have to turn over some of my volunteer efforts and how I would like to see them handled gets forwarded without thought to the information contained within. People   who see that email decide it is OK to come up to me and tell me the email has been forward and mentions of things like “your condition” and “your health issues” permeate the conversation that she thinks is acceptable to have in front of my son. 

I want to know why everyone thinks it is appropriate to think it is a good think to talk about this in front of a child. 

Others have done this, talking about my cancer in front of my son.

And they can frolic away thinking they have been so good and noble and all because they got to tell me they are concerned while I am left with a concerned son, who has since started throwing up at school (again)… something I believe is tied to stress and concern.

And I want to yell at these well meaning but stupid people; “Why the fuck have you decided you can make this more complicated for me and then think you are so dammed just and gracious?”.

They are so blissfully unaware. I have to let go but as I deal with a son who I am trying to convince that I will be fine and nothing is wrong and because he dwells in silence from not understanding what is going on has no idea of what questions he needs to ask and I can’t know what I need to address.

I don’t know how to tell these people that they have been wrong in how they handled this. I am not even sure that I should. I know that if I would do something so thoughtless that I would want to know. but I don’t know how to be gentle about it.

I wonder if this is about displacing the anger at the way my body has betrayed me towards others. It is hard, and confusing, and ever so extremely frustrating.


I recognize it goes both ways, allowing what will continue I mean. Do I allow myself to dwell in my reactions or do I allow them a lesson learned so that they can learn from their experiences. 

Who needs the most of my energy?



How do I travel this road gently and with grace?

Day 14 – 40 days of Writing – Colour

A family friend keeps crossing my mind these days.

Her name was Ilza Hahlo. She was born in Vienna in or around 1908. She grew up to be a textile designer and designed costumes and sets for the opera there. She came from, what I assume to be, an affluent family. She had access to resources many did not. As a young girl she and her sisters had some warts on their hands treated by radium, by the infamous Madame Curie herself, I was told.

Of course, it must have been so exciting to be treated by someone who was revolutionizing the world. There was no way of knowing, I am sure, what the after effects of such a procedure might be.

Ilza eventually moved to New York and tried her hand at textile design stateside. She really did make beautiful textiles.

One of Ilza’s textile designs

Somehow she ended up in Arizona, which was our luck. She was a beautiful woman when I met her. We also knew that she had cancer when she came into the family friendship fold. It is assumed that her cancer was the result from the radium exposure she had as a young girl.

I recall one time, as she and my grandmother visited each other one bright Arizona afternoon, hearing Ilza tell my grandmother that as her illness got worse, her colours got brighter as if she was trying to bring all the goodness in light in and shut the darkness and pain out,

This has been running through my mind a lot these past 13 days. There is a darkness that descends and while the pain I currently feel is the result of the last biopsy procedure, there is something else there. It has hints of so many things, despair, anger, fright… to name but a few.

Managing those emotions on a daily basis is very new to me, I have been made aware of just how happy I was/will be. What an unspeakable privilege this happiness is. It weathered through me through a serious chronic illness (valley fever that symptomatically lasted one over year) and the darkness of being on bed rest for a great amount of my pregnancy.

What is so different now. I think it may be that my own mortality is coming to rear it head in front of me. Suddenly beautiful things mean so much more;  the goofy faces my son makes as his face matures from little boy to what it is now, the bright colors sweeping across the sky of a morning sunrise.

Subtle changes in myself too. The other day I ran across a nail polish set my mother had given me with wild and bright colors as I tend to prefer for my pedicures. I pulled the light teal color bottle out from the set and painted just one finger nail with its bright pastel hue.  I can’t stand to have my nails painted, but some how this one in bright green, seems to be less of a bother. I smile when it catches my eye as my hands wave about as I talk during the day.

I also chose to wear a pair of red pumps, though I am not wearing a stitch of red clothing. I am wearing blacks and browns, but on my feet are these bright red shoes. They invoke my grandmother, as if I am asking her to guide me as I walk this new path.

So colour has taken on new meaning, bright patches of it to cross my path, much like a brightly plumed parrot stands out as one walks through the mass of greens that are everywhere under Amazonian jungle canopy.