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.

..

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!

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:

Scottsdale First Church of the Nazarene

Junior League of Phoenix

Tapi

Arizona Oncology

AZ Department of Health Services

Genesis City

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.

Day 12 - 40 days of writing - managing vulnerability

Vulnerable

I am feeling so very vulnerable.


vulnerable
/ˈvʌlnərəbəl/
adjective 
1. capable of being physically or emotionally wounded or hurt
2. open to temptation, persuasion, censure, etc
3. liable or exposed to disease, disaster, etc



Let me be very clear. I don't do vulnerable. Rather, I don't like to do vulnerable myself. Support vulnerable I am pretty good at. 

This is vulnerable:

I am not that.

But yet, I feel so exposed.

I suppose there is this thing about letting go. My whole life I have loved fiercely, family, friends, the underserved among so many other things. And there is something, with a couple of rare exceptions, that is very one sided. In most of the cases (outside of family) love not expected to be reciprocated. In terms of friends; I can love them as much as I need to but since I know how variances are in the complexities of human relationships, I haven't really expected or even needed them to love me back.

Until now, I suppose.

I received an email from someone I think is wonderful and call a very dear friend and in her email she said she had called me a best friend. Oh, I was struck by that. I hadn't known that she had classified me in that category, and I was deeply, deeply touched and very grateful. I am better at the subtleties of friendships with men, and not so good at them with a grand preponderance of women.

But, it feels so vulnerable to allow oneself to be loved in this kind of situation. At least, for me, in terms of relationships outside of marriage and genetics.

As an aside, I made a variation of this Ayurvedic Dal recipe, it is a family favorite that is rich and complex in flavor but so hearty and filling. I even quadrupled the basic recipe (only one can of coconut soup, and some other changes). The way the currants plump up and complement the curry power is like a bit of food heaven.

Normally, I make brown rice but for some reason I bought some jasmine rice. In an attempt to make rice Ecuadorean style I followed the way Carloti (our live in maid/nanny) showed me...something like this recipe, but letting it sit longer so you get a crispy bottom.

There is so much comfort in comfort food.

Day 11 - 40 Days of Writing - ten years ago my cervix failed me too

I realized that I have been blogging for 10 years, starting around this same time of year. There are earlier posts but those were after the fact. The linked one was my first and the one before it was an email I sent to friends on that day (he day I retroactively published it).

The huge irony is that it was about my cervix as well, granted in that case I also gained a son... instead of in this case where it is about losing my uterus.

It is ironic, I suppose... to have started this blog because I was in a dark place. Bed rest, as romantic as it may sound, was amazingly lonely and dark.

And now, these ten years later (almost to the day) coming here and writing again from another dark place, that has a very different feel to it... a deeper kind of vulnerability, perhaps.

Jean Jacques Henner - Solitude

Day 10 - 40DOW - tired

I'm tired.

I am lucky.

But, I'm tired.

Part of me feels like I should want to scream.

But, I feel tired.

Another part of me wants to curl up and sleep through this... wake me up when it's over.

I got my paperwork for the oncologist and I left it sitting on the floor by my bed.

CONQUER

CANCER

It reads.

I am curled up on my bed staring at it. 

It looks so optimistic.

Wondering if I'll get turned away because I don't have any "films" to bring with me, just my sad little 2 page pathology report.

Are the 18 days I had to wait going to get pushed to more.

This waiting is painful.

I'm trying to be patient.

And grateful.

And I am...

Really.

The sweet notes and efforts are so unbelievably touching.

But I'm also angry.

At myself.

And scared.

For my loved ones.

And tired.

So very, very, tired.

Day 9 - 40DOW - a little conversation I want to have with men

I think the one thing that has been hardest on me is how the men in my life have handled this.

First of all, let me state this is not all the men.

My husband has been über fabulous; he has been there for me and has been a solid rock and really been wonderful and supportive and asked questions and made me feel like he is in this with me 100%.

It is the other ones.

Like My Boys   - sigh.

I mentioned the one that talked about himself after I shared the news... though he has sent a note back in which he sorta says one brief little thing and proceeds to write about himself for three or so long paragraphs (that is how he is). Another, that found out through his wife, sent a note to my husband saying that he knew. For those two, it was perfect. It fit their personalities and I am so glad. 

I did share with the other boys, and nothing. I am hoping that they might be out of town for a very long time or too shocked at the news and feel kind of helpless and not know what to say or even do. I mean there is something so very personal about talking about your lady parts with a man, I imagine it might be embarrassing or something along that fine continuum for a man to talk about a female friends girly parts in such a deeply personal way... even if you never utter the words cervix, ovaries, uterus, vagina.

The other three male friends that I have told have been able to reply. One with a sweet message and encouragement and stories of how his mother has gone through something similar. Amazingly supportive and wonderful. Another apologized about what I am going through and then turned into a lump that seems to want me to take care of him. The last proceeded to offer a bunch of medical advice based on his experience with his mother and her ovarian cancer.

I can't imagine what it must be like for a male, to hear from a friend that her girly bits have failed her in such a dramatic way.  I am sure that saying "I am sorry that your cervix is going through that" just seem too ridiculous for a male.

So, if you are a male and you have a friend (or loved one) who has been diagnosed with a reproductive cancer (or any cancer) here is some advice based on what I have learned so far;

• If she tells you, respond. Even if you just say: I am so sorry you are going through this. I don't really know how to respond, but I am here if you need me. Repeat this on occasion if you are still speechless.

• Prepare yourself, think about times when you have been scared, or ill, or going through a difficult time. What did you want to talk about? What did you need? Consider your friends personality; is she forthright or private and talk to her. 

• Tell her you are sad that she has to go through this, acknowledge what she is going through.

• If possible, invite her to lunch or dinner or breakfast or brunch, and listen to her if she accepts (and let her know it is ok to say no). Ask her if she needs a hug, and talk to her about things you know interest her; books, plays, etc. Reminisce the old times, make her laugh at how silly you both were when you were younger if your friendship has lasted decades. 

• Don't continuously pick up and stare at your phone or allow other distractions when you talk to her, especially if she is talking about what she is going through.

• Let her know you are interested in her health, and are willing to help. If she is alone, ask if she needs help putting in light-bulbs or other small house projects. If she is married or living with someone and you know them, ask if you should take her partner out and get his mind of things. If you offer, and she accepts. Follow through. 

• Be honest about your feelings.

• If you have a history of doing things together, plan something she can look forward to.

• If you have shared friends, ask if she would like you to let them know. Respect her answer.

• Try not to offer medical advice. Don't send her information on protocols and options don't be upset when she makes decisions that you find odd or extreme or even not extreme enough. 

• Most importantly, continue the friendship... knowing there is a support system out there for her is incredibly important (even if she doesn't take you up on the offer)

I hope that I have given some pointers that are helpful. 

These are ideas based on my experience so far. I am sure that there is some variety among women who are going through this and I am sure that Google probably has far better advice available if you search. 

IMPORTANT UPDATE:  Please refrain from talking about her disease around her children. She may choose to really limit what the kid/s know during this time since it can be super scary, and needlessly so.

Day 8 - 40DOW - gratitude

I've been sick the past few days. Fever and runny nose, you know that route, right? 

The thing is that when you're one week post op, you shouldn't take risks, especially as I move on. Couple this with a change is what I will call discharge. I called my super awesome GYN. He had me come in to make sure everything was ok.

He was not with a patient when I walked into the back office area. And he must have seen me stepping on the scale. I heard him say, the good news is that you look good. I smiled and told him that I was indeed feeling better, but we had different ideas on what good meant. We laughed. He came over and said that he was really glad I called, that most patients would just dismiss the fever as being the cold, and that he was really, really glad I called.

When he came in to see me, I got to ask the big pressing question in my head which, ironically has nothing to do with cancer.

Can we take out that IUD you fought so hard to preserve at my last biopsy, and if you do, can I keep it?

When I go back next week we will remove my IUD and I will get to keep it. I figure that since I actually kept my cerclage (it is a link to a link, so if you don't want to see the knot that held me shut, you don't have to click all the way through and just stop at my picture of Squink) that I wanted to keep my IUD as well. Symbols, if you will, of the two times my cervix failed me... or rather, of when we failed each other.

This exchange actually led to a very interesting discussion of complementary medicine. I really have a wonderful gyn.

So, gratitude... yes. Aside from whomever is coming to see this blog (and it averages about 1 person per post (which may be me since I am writing this) I haven't really told many people in the grand scheme of things. I have told my family, not all of them just the close and a few extended (a couple of cousins, though not all... I suppose I should do that tonight... though if truth be told the cousins I haven't told are part of the group that thought letting me know that my grandmother had passed away via a public Facebook post was appropriate... so, I figured I could return the favor in some way). 

Anyway, I sent out a bcc email to some folks who mean the world to me and who did not know. While I did not hear back from everyone I emailed, I was delighted with who did respond and what they said. I did send it out to a few males, I heard back from two. That was a surprise, they wrote these sweet gentle notes and considering that they are not sweet gentle men, I was touched. 

I also told my fellow board members of an agency I serve on the board for, they were amazing and supportive. One bought me what she called her Catholic cancer kit; a statuette and booklets/cards of Saint Peregrine, some chamomile tea, and Holy water from Lourdes. 

People who have chosen to reach out with messages of support and love have been so treasured. Phone calls, emails, letters, notes, offers of lunch or dinner and other... I feel so much comfort in their messages and offers of time and help.  One (one of my guy friends) even saucily wrote that they would rather look at pictures of food than hear the news I had just given...

For you k...

I am so very lucky that I am not alone on this experience.

Day 7 - 40DOW - Curious George is my new hero

There is something kind of magical that happens when you get a serious diagnosis... You get a new level of patience and tolerance, and you hold closer to what's unacceptable and intolerable.

It is as if one gets knighted and imbued with certain super powers. Probably though, it is just some form of self examination that allows for some serious decision making.

I am not dying, but this may be the closest I get to that in a while. A friend wrote me last night about how I was now in the middle of my "bull fight" and that I had an arena of friends who were supporting me through this. I was struck by their using this metaphor not only because I am a bullfighters daughter, but because there really was some intense truth to what they wrote (and also because they hate bullfights so I was surprised to see them use this).

Without delving into a treatise on bullfighting, I will say that the bullfight is not about the torero, it is about the relationship between the bull fighter and the bull, each playing into instincts and their very special mortal relationship. They are each trying to figure the other out, and while they are separate, they form a symbiotic relationship. I am here in this ring, and I am that relationship, the instinct is driving me to examine my surroundings, and as they said, I have a cadre of people supporting that.

Which brings me to something else that has been swirling in my newly seriously introspective mind.

I recall the day when you heard that someone had cervical cancer that a pretty loaded assumption was possible made:

The woman (since men do not get cervical cancer) was a loose ho-bag and had proverbial round heels

I have heard this whispered amongst the most gossipy of people even to this day. So, yes there is a certain fear of assumptions that people (stupid people) may make about me. I know that I have never been a loose ho-bag and I most certainly do not have round heels. And I don't think that what is happening is the direct result of any karmic like indiscretions I may have made.  I am a human with a cervix and it has betrayed me (yet again).

I sit here newly diagnosed with something the most heinous of gossips use to tear people down and between that and the whole mortality associated with the word cancer causes for an astonishing amount of reflection. Self-reflection certainly, but also about the world I live in; the friends I have and thee ones I had, the adventures, the quiet moments, the rage, the gentle, the sweet peace when my son rests his head on my lap, the Ebola crisis, our southwestern drought, or awfully separatist politicians, the atrocities in the Sudan... all these and so much more... they have become different in some ways now.

At the root, though, these are extensions of curiosity, which is a true animal behavior.  There is something primal about trying to understand what is happening around you.  A certain fierceness comes, priorities seems stronger and there is a certain curiosity that reigns over me. It is like an adrenaline rush, but in a very sedate way (much like the adrenaline the human and the bull need to control when in the ring). I consider how the social animals (outside of humans) interact with each other. Elephants are amazing at this, but so are so many other animals. And there is something beautiful in that... in feeling close to that which unites all of us animals as we try to make sense of the world around us. It connects me to my surroundings, makes me feel a part of something whole and those who think this kind of thing (introspection) is something selfish, elitist, or wrong are just temporarily disconnected from the life death continuum.

Day 6 - 40DOW - another stage, perhaps.

In Old Norse the raven was a popular symbol and represented the power and wisdom of the mythological god Odin who would strike fear into the hearts of even the bravest warriors with his two fearless ravens sitting on his shoulders.

Me Hello again, 3:00am. You kind of suck for me right now, though I recall the days when you were fun and I was much more invincible.

I've moved into the next stage. Or is it another stage?

It happened the second I hung up on the last person in my inner circle.

The very second my finger pressed the hang up button.

I felt stupid and ridiculous for all the crying and sad.

This is stupid, I thought to myself.

You're trying to get attention, I scolded myself.

You are making more out of this than it deserves, my inner voice admonished.

I felt ashamed for my tearful calls and emails to these people who mean a lot to me. 

My brain rattled off a list of the reasons that supports its claim that I am swimming in ridiculous.

There was a tiny voice telling me this was all OK. These are scary new words and it's ok to be scared. But tiny voices are easily shut down.

Is this denial? Acceptance? Are there even progressive emotional states after a diagnosis like this, like the stages of grief?

I know I am not going to die, so why all this fuss? Is it really all that ridiculous that I want my mother and aunt with me, even if this causes them even bigger inconveniences? That I want to monopolize their time and play paper dolls with them, like I used to do when sick and at home as a child.

I always loved paper dolls from other cultures

And the vestiges of anger are poking through in those who mean well and tell  me what to do, or discount my thoughts on what I know may be my treatment options. This is my damned body, not yours.

Is there an angry denial phase? Am I really angry? Am I in denial?

I hate that as my body recovers from the cone biopsy, the aches and pains tease me into thinking that the cancer has taken control... that it has, in a blind rage at the attempt at its excision, rallied like a fire breathing mythical beast and waged a war inside me that I am slightly oblivious to and thereby allowing to grow with wild abandon as I navigate the days until my oncology appointment.

I decided that if it should have a name that somehow the notion of carrion should be involved. I have decided to invoke the ancient Valkyries of my genetic past, the ones that were ravens that became the ears (thought) and eyes (memory) for Odin, that cleaned up the battle fields by eating away at the carrion that resulted.

I want those ravens to remove my carrion and bring me the wisdom to do it bravely.

Day 5 - 40DOW - I don't have Ebola

Restless nights provide for interesting lucid thinking. I'll start from a doze-like-state with some thought usually a random one.

At this point, it's 3:00 am and I am snuggled up in our Arizona pines under a heated blanket. I have arranged for a Skype call with my sister in England for later. But what woke me was the thought; "I don't have Ebola". Which isn't that far off since we have a gentleman up here in a self imposed quarantine after his return from a mission trip to Liberia. News link

It's also interesting that I've had to, on a couple of occasions, give friends permission to worry for me. When something scary happens to someone you care about it can be hard. But it's tough to understand since I've always felt the right to deal with these things as my body dictated. I'm also surprised in the ever slight shift in my self. I'd consider myself to be nurturing in many ways, I tend to love people fiercely when something about them speaks to my soul, and as I manage the phone conversations and emails, I feel decidedly more nurturing to them. It's very subtle, but it's something I've noticed. I wonder if it's the result of the emotional exhaustion or just an internal shift and I wonder how temporary it might be... this urge to tell the people I love that are family and friends to give in to how their body is telling them to react. Maybe it's because I see love in their reactions and I'm honored and humbled by its reciprocity.

Maybe it's because it's now 3:30 am and I need to get more sleep.

Here is a picture of a bull with a B on his butt.

Day 4 - 40DOW

Emotionally drained.

Moved through the last phone calls, began the personal emails and then prepared for and began to draft the mass email to friends whom I respect. 

At this point I became exhausted and took a several hour nap.

 

People, so far, are being gracious and supportive. Except for the one friend who heard the news and (not unexpectedly) proceeded to talk about themselves for 40 minutes. Thankfully, it caused me to laugh in some form of delight.

A last minute trip north, just to get out and get a break. 

Everyone on their respective devices, random conversation about physics, religion, books.

Two more personal contacts left... 

I feel better today.

Day 3 - 40DOW

My prima gave me this.

I made it through the first night with the "C" word.

I slept better than I thought, but I think I woke up more often, though my fitbit says otherwise.

There is a part of me that wishes I did not have to tell anyone. And I mean anyone. That I could forge through alone, because, frankly, it would be easier for me mentally... relationships take an awful amount of energy and I suppose I want to save it (energy) for what is important,

But, I can also admit that I just won't be able to go through this alone. I need my team. I have the core. I am glad for that.

I hate very much, though, that I find that I break down in tears, and tend to do that when I am rummaging through closets and cupboards. My friend says that she did her crying when she was in the shower.

I hate that I keep telling my son that I keep getting dust in my eye. Because I just start crying randomly... even when thinking about red-lights and changing lanes.

But you want to know what scares me the most? Telling my friends. My close friends. The people whom I would want to know if something difficult/similar befell them. I am struggling on how to tell them. Family is easy, I know they will stick by me. Extended family is easy, I know they will manage in their own way. Strangers (like my son's teachers or parents at Squink's activities) are super easy, mainly because I frankly don't give a fuck what they do.

But those who fall in between nothing and genetic filial obligation... they scare me. I have started the process. I have called most of the people that I truly value, the ones I hope I don't lose. There are a few left, but they have birthdays and other events going on, and since I don't really know what is going on with me (in terms of what is going to happen ) and won't until I see the oncologist, it can wait.

I wrote a friend who is on this same track right now and asked what to say, what to do, did anything work better...? And she confirmed my fear (which I knew but I was hoping that my awkward introversion was at play) that there is no right way.

She also touched upon how there is this period of not knowing, and that you don't want to fling the diagnosis out, but then secrecy happens and people get nervous. So I think I am going to ask if I am free to emulate in a grand unveiling, if you will indulge the flourish, of what is going on with me.

I am starting to feel like I am fitting pieces together, the pieces of what I need and want in order to move through this. I know I want to proceed with rose tinted optimism. I consider myself to have my feet firmly planted in the ground and am aware of all sides of things, I want to get through this without wallowing in dark and negativity that is generated by other people. Why, do I want this? Because I know I am going to go through all these different stages and I won't allow negative Ned's and Nelly's" to bring me down... I want you to lift me up, to sing with me, to smile, and say "Blair, this will all end up OK".

So, I suppose not only am I afraid of the friends I will lose because they are burdened by a fear too great to be with me through this, but I am afraid of the friends I will chose to lose because they are too negative or pessimistic people to be around. I am still trying to come to terms with this.

I still breathe.