Category Archives: biopsy

Day 1 – 40DOW – viewpoints on vaccines

This morning was a struggle. 

I am trying my damnedest to get this to happen:

If you can RSVP for a Phoenix event click here.


I struggle because I want it to be successful 

The team I am working with has been UNBELIEVABLY supportive… but it is so hard to get buy in from other folks.

I struggle with that.

But it, my sense of struggling, may have been that I had an unscheduled visit to my oncologist today. 


Bleeding.


Something I am not supposed to be doing at this point.

So I went in and saw my doctors nurse practitioner. Who performed a biopsy. 

I have had biopsies before, in that area…  it hurt like a motherf*&%#r. 

Even though she told me that it was my job to assume it was due to scar tissue, she also told me it was her job to rule out recurrence. She reassured me that it looked like granulation (BTW – don’t Google it).

What makes this situation even crazier is that the woman who did my biopsy is also a woman who will be on the panel for the movie screening.

Following up on the fact that I am helping to host a conversation about a preventable cancer
and that one of the panelists will have seen my girly-bits, I just got word who a second panelist will be and…. guess what??????

She has seen my girly bits too.

She was there when my son was born, as in the room… standing right between my husband and my mother.

So, I am trying to find the beauty of all of this. So, “this” being a weird place in my life (waiting for biopsy results) the week before I am helping host an event. The event which happens to be about something that most likely got me into the biopsy situation in the first place.

Anyway, the big shift for me has been to try and be kinder, gentler, more gracious… and yet stay my own person. Hard to do when you are in pain.

I lay there waiting for the biopsy, pretending to be under a fancy kitchen heat lamp


The biopsy was really painful, it still hurts as I type this some 12 hours later.
I still have so much to be grateful for, But it is kind of nerve wracking to be in my position, again… you know, waiting for results. Not the most fun place to be.
Anyway, after my ridiculously painful “procedure” I yelled out “fuck, that hurts” and immediately apologized and lay on the exam table, in tears, for a while. The nurse practitioner who took the biopsy was so very kind and seemed very distressed by my reaction.
I was pretty shocked by it too. It was, however, really painful. I have had biopsies of my girly bits before, without any numbing agent, and it was nothing like this.
At one point, during the second “grab” for tissue I screamed out “oh fuck that hurts”, and then immediately apologized. I am generally not one to curse much… I was embarrassed.
I lay on that exam table, tears streaming down my face, trying to get back to a normal breathing, staring at the bright light above me wishing there was something like a rainbow pooping unicorn to look at…
The nurse practitioner held my hand, asked me how I was feeling, helped me get some of my ibuprofen and drink it down. She seemed very concerned. All very kind considering that she had just learned she would be speaking at the HPV movie thing and that I was involved.
After my breathing got back to normal and the tears stopped falling down my face, she told me to lay there as long as I needed. She, and the other NP with her, quietly left the room. I lay on that exam table, and the tears came back.
It was a pity party I suppose. I lay there crying and trying to remember to be thankful that this was an experience in which I had had tremendous luck. No chemo. No radiation. a tumor the size of a grain of salt.
I lay there looking at the light above me. Trying to make it something more than just a light, making a distraction from the pain in my internal surgical site and the pain in my heart.
My heart did hurt, I had a vaccine preventable disease.
Let me say that again, I was diagnosed with a vaccine preventable disease.
One that would have prevented everything, a sub-total hysterectomy, worry, agony… and today’s darn biopsy.
It is a vaccine preventable disease.
Granted, I was born before this miracle vaccine was developed. But it is a vaccine preventable disease.
And as I ran through a list of people I do not particularly care for, not one of them and not one of their children were eligible for my wanting them to suffer what I had suffered through, I AM suffering through.
Vaccinate your children. In some cases yourself. Your boys. Your girls. This alternative is not fun. not fun at all. The HPV vaccine is good for kids aged 9 to adults aged 26.
It is a vaccine preventable disease.

..

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A year in my life

A year ago, I had sent my son off to Europe and missed him terribly.

I think it was the Starbucks app of the week that was a picture a day app. I downloaded it, because;
1) it was free
2) I was thinking about documenting how much I missed my son

So, I took the selfie… and time flowed and I stuck to it and yesterday I got a notice that I had taken 365 photos.

One year, one insane year.

A son sent abroad at a very young age and being diagnosed with cancer. Not really sure which was hardest at the inception.

I missed my son terribly and was so happy when I reunited with him.

And hearing you have cancer sucks, sucks, sucks… and somehow it infiltrates everything.

But I missed my son and that was the hardest thing ever, and yes.. in a way, it was harder than being told one has cancer.

But the cancer things has its own craziness, craziness that makes everything outside the norm seem so much scarier.

So here is that one year of selfies, and as I sit here trying to figure out what all to tell my oncologist when I call him tomorrow, I think I look so much happier now than I did when I missed my son so much!

https://www.flickr.com/apps/video/stewart.swf

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:


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. 

thoughts – random and reflective

The other night, as we arrived at home I asked Squink what he thought tomorrow was… he turned to look at me as if trying to discern if that was a trick question.

I smiled at him and said “It is so many days until your birthday”

He smiled and then replied with “And yours is tomorrow!”

I asked him how old he thought I would be (this was the trick question)…

He looked at me, squinted his eyes a bit. Said “56?”

I shook my head to say no.

He replied “60’s?”

I shook my head no, again.

He opened his eyes wide and said “70’s?”

I smiled, how wonderful to be so young and so unaware of what those numbers can mean to an adult.

I smiled at him, patted his head and told him it was in the 40’s.

He paused thoughtfully.

Then he changed the topic, in that way that children do that is more about the swirling of thoughts in their brain than the desire to change the subject.

~ ~ ~

So I awoke this morning with sweet birthday wishes from Squink, who came to jump in bed with me and offered what may be the best birthday present a mother could have; The Birthday Snuggle… complete with singing and kisses on the nose.

A gentle quiet reminder of something that is very special.

We got ready, ate breakfast, and then opened the door.

And we had this most amazing sunrise greet us as we left our  home.

The sky was full of pinks, and blues and yellows and orange, with that kind of cloud cover that makes the colors ever so much more vibrant. I tried to take a picture from our front porch, to no avail. But Squink and I stoop looking at the sky being so grateful for such glory. I managed to get another picture that shows more of what I saw when stopped at a stop sign a few blocks from my home.

This is the best my phone camera could do.

I have to admit that when I saw it and was in such awe that I thanked God for such a beautiful birthday gift. I experienced something that felt like it was intended specifically for me and that could be shared with others. Which seems so completely selfish, but that is how I felt for a brief flash of time as I stood there.

Navigating life now is different. Complex. I am in a very different place from any other time in my life. I am really struggling with the whole diagnosis thing. I don’t know where to fit it in, I suppose.

I don’t know what to say. Am I a survivor? I mean, that size was under one millimeter… to say it was caught early is certainly true… but it is super micro early. My doctor told me in his thirty plus years of practice that he had only three patients that fit in this super early phase. The kind of phase where the only intervention is surgery. There is a kind of disbelief in that, for me anyway.

As I experience my body heal, I am struck by just how intense a process it actually is. I am constantly aware of my incision (can I even call it a scar yet, as it has not fully formed?). It is a feeling that is so constant that I am left to wonder if this will be my new normal, that in time I will adjust to the tight, sore, prickly, ache in my belly.

I keep asking what my lesson here, in the entirety of this situation, is and I have no idea. There is no concrete thought about what it is, what it might be, and perhaps most disappointing of all is that I don’t even know what it should be.

Though, now that I have written this down I wonder if that might not be it. A need to shed a need for guidance and lessons from things and circumstance. Which seems ridiculous to think now that I write THAT down.

I lead a very happy life. I am grateful that I am here, today, in this moment. That I am able to love the people I do love, that I can like the people that I do like, and if I dig in a little that I can even dislike the people I do dislike.

~ ~ ~

One of the stories that has stuck with me is a story about how Sandra Day O’Connor did not reveal that she was in the midst of a breast cancer diagnosis/treatment when she was nominated to SCOTUS. The reason, as I was told, was because there is such a misconception of the disease that she KNEW that if congress knew about it that she would not get the nomination. many people have assured me that this is a true story, but none of them were Justice O’Connor

This made me sad then, and even sadder now as I navigate a similar thought very different path. I don’t know if it is true, I have always wanted to ask her. I am even more especially curious now.

I applied for a significant position in an organization I belong to. I was denied the opportunity though, being told that my circumstances affected the decision not to interview me for the position.

I was public about the “circumstance” because I felt called to remind women that simple check-ups can and do save their lives. But that, caused me to not be considered for something (at least that is the reason they gave, and I have no reason to really doubt it but we do live in a complex world).

I am still very, very disappointed that I was ineligible to be interviewed. Part of me considers that I was discriminated against due to my diagnoses (which seems like it should be illegal, doesn’t it).

What this does really, is reinforce this feeling of “what” in this experience.

  • Some might say I was being punished by God. Something that I doubt, 
  • Others may say I am supposed to love life and be grateful. – I feel like that is a place where I was strongly at before and am strongly at now – I feel gratitude daily.
  • Others might say it is a consequence of a misspent youth. – possible, I suppose. But what isn’t?

I do try to navigate this whole situation moment by moment, though.

Perhaps it is a cacophony of lessons that are too numerous to reduce to just one big one.

Perhaps, it is just life and how life works.

Day 26 – 40 days of writing – oh, the indignities…

Aside from the obvious, which is having a shocking number of medical personnel have access and *ahem* viewing rights to my girly bits…

There is also this:
Of all things, this is called “THE BOWEL PREP” and it merits all caps because it’s all about prepping my bowels.
And that’s just BOWEL PREPPING… For surgery… that is NOT on my bowels.
Puchicas
To make matters ever so slightly more dramatic, I decided to delay my last ingestion of solid food for a while because my breakfast was a bit on the pitiful side when one considers that I won’t get to eat until fucking Tuesday (pardon my French, but it just seems cruel to wait that long when gluttony is my favorite sin). THEN (all caps for continued dramatic effect) I chose McDonalds (of all things wrong and awful on this planet) because I didn’t want to delay it too much (as I was violating a strict interpretation of my pre-op orders already) and I was in a small town but needed to head home and there was no way in hell I was taking magnesium citrate at the start of a 90 minute road trip because the thought  of forced roadside stops with or without the benefit of a toilet (and more importantly soft toilet paper) seemed like torture.
So, I waited until I was within a 20 minute drive home and drank my cherry flavored liquid (from hell).
That being said, the version of “BOWEL PREP” that I get to do for this operation is so much nicer than what I got to do for my colonoscopy.
Small blessings.
Now please excuse me, I need to powder my nose.

Day 25 – 40 days of writing – small things and gentleness

It is amazingly easy for me to love.

Being loved is ever so much harder.
Emails, texts, phone calls and conversations with loving support.
Prayers, whispers, meditations, sending of light, energy, vibes… all in my name.
A bouquet of flowers at my doorway.

A tin of gingerbread cookies

I sit in a whirlwind of these expressions of love and am so humbled.
It’s hard, I am not one to depend on the kindnesses of others.
I was chatting with my mentor, an allomother. 
Strangely, it is (at this moment) much easier to let go, to give in to this process. Gratitude is just so much more deeply felt, I find that in order to respect it, I need to let go of my deeply ingrained habits of not wanting to inconvenience people I care about.
So, this is about a lot of letting go…
 and wearing my pj’s for a while.

Day 22 – 40 days of writing – wings

“ You strode deeper and deeper

into the world,

determined to do

the only thing you could do,

determined to save

the only life you could save.”

~ Mary Oliver, from “The Journey”, in Dream Work (1986)


So very true. that poem above.

A poem. Ironic, isn’t it?

The waiting is over. 

My surgery is scheduled. 

I really like my oncologist. He is a gentle man with a mysterious air of steel reserves that make letting him work with my choices a dream.

I have power over this process, power that the oncologist has given me. This is special.

I have received so many gentle gifts in the words of people I know.

It is so hard to be humble when one feels so betrayed by their body.

I recall the days when I worked to help get Arizona to use the funds allowed to states through the Breast and Cervical Cancer Prevention and Treatment Act of 2000. There was a community lobby day where people went to speak to legislators about the importance of these services.  One of our FEMALE state legislators listened to the impassioned plea of several women who were lobbying that day, many of whom were cancer survivors. The FEMALE (in caps because I am still incredulous) told them that she was unable to support the legislation they were requesting for her to support because “only women who are loose and get abortions will get breast and cervical cancer”.

Thankfully, we were able to pass this locally. 

Like my life right now, there is nothing coherent about this post. 


The Bloggess pinned it to her Pinterest account

I miss my old life. I miss the tendency towards being boldly dangerous and striving to do noble things. I miss my light, my ability to frolic. I miss being fanciful, and feeling beautiful, and also of being fearless. 

I miss my wings.


Day 18 – 40 days of writing- The long, slow, walk to the guillotine.

My paperwork is filled out.
And I sit here, today, tonight, feeling like I am awaiting an execution.
There is such an ominous feeling in knowing that tomorrow all this becomes so much more real. There are conversations I have to have…   decisions I have to make… all of which feel overwhelming to me now, even before they are completely and specifically known.
And as I contemplate them… the ones that are somewhat known, they feel so bitter.
I can’t ask “Why me?” because this is a product of life; choices that I made and that have brought me to this junction. It is futile to wonder the why, but in my most self pitying moments I wish I could scream this into the abyss… and then reason takes over and answers me gently.
Nature is so cruel. I was brought up with that in my every day life. And yet, I want to scream… “why do this to me, why take the one thing that is a symbol of being a mother and obliterate the last few years of my chances at having more children”. “I wanted six”, I want to add to my scream, and in the end I feel weighed down by this incredible failure of aspiration.
And perhaps it is this failure that makes things in this situation so damn hard, because it is just that. A failure.
I look at the exotic eyes of my beautiful son, and choke up at how much I love him and how profoundly lucky I am that he came in to my life, and feeling that the intense lamentations of the ones who were never to be born are equally lost to him.
Couple that with the idea that I should be grateful that I do have him, creates a whirlwind of emotions as intense as they are complex. 
That which I have held most sacred, motherhood, will be denied me (in this way) much earlier than I am ready for.
The rituals of this disease are subtle and fierce. My physician turned my care over to the oncologist. I do not get to return to him until I am released back… much like a prison sentence.
And so, I feel like my dinner tonight was a last meal… and tomorrow will begin the long, slow walk to my own personal guillotine.

Day thirteen – 40 Days of Writing – Obsession

I loved the way Obsession for Men smelled (when I was a teenager).

Yesterday, I obsessively read my pathology report. And by obsessively I mean that I read it repeatedly for a 5 or 6 hour stretch of time. I read this two page report and felt so much that it was as if my life depended on it. I would focus on one part of it, set it down, ponder it, and then come back to it and re-read that section. I would then set it down. Then pick it up and read the whole thing again. Focus on another section and repeat this process all while watching the utterly mindless and unbelievably mind-numbing Vampire Diaries on Netflix as background noise. 

Thankfully, I am done. I think. I don’t really want to read it any more. My medical school stint reared its virtual head and I gained that understanding that I was looking for, picturing in my head the sizes of the different samples, trying to picture them as I read the descriptions. These three dimensional images rotating in my brain and looking at them from all directions. My brain would form these hologram like images as I studied each section of the report and the three samples in question and I could twist them to try to better understand the height and width and depth in hi-fidelity color based on the descriptions of the stains they used. My brain hadn’t thought this way for a while, it was both exhilarating and exhausting…. and all while not focusing on the screaming absence of the words “clear and present margins” and breathing deeply and heavily at the places that stated that the “extend … to the margin”. Wondering then, how much further they could have gone in order for me to be able to read those words I kept hoping to find.


That those two black and white pages that my GYN faxed to me contain the key information about what is going to happen to my life for the next few months (years, too) is a bit mind blowing. It is like the home pregnancy test I took when I was pregnant with Squink, something so small serves as such a huge symbol of GIGANTIC changes that are about to come.

It just seems, in a weird way, that these symbols of huge life changing moments should be different somehow. Maybe. It is also just amazing how simple things reveal so much. I wonder what the pathology report would look like if I painted it, applied rhinestones… or gave it a tiara?

As I woke up today and wondered what inspiration might come my way in terms of what to write for this round of 40 Days Of Writing… all while pondering how I spent my day yesterday – and hoping that I wouldn’t be so stuck on the diagnosis and the “C” word…  when, I thought that part of this process of managing a diagnosis like this is that there is an element (or time period) of obsessing about it. Trying to get into its skin, wearing it and figuring it out… especially in those times of waiting (which frankly sucks the most of anything so far).

It all makes perfect sense, in a way. Today is another day.