The Good News

So...we were able to get into to see the specialist this Monday. This was very good news because we were told that we were not going to be able to get in for a consult until the 30th so any day before that was going to make me quite happy.

We hung out with Alpha's mom all weekend and then we told her the news on Sunday night.

This was an emotional conversation - but incredible.

Late Monday we met with the physician. He gave us our options: biopsy, interval CT, removal of the nodule...

We asked what he would recommend...to which he replied that "given how small the nodule is that going a noninvasive route would be reasonable..."

We asked, "small, is 8 cm a small nodule?"

He said, "what 8 cm nodule?"


You see - it turns out that the radiologist that read the Chest CT Scan...

You know the one that we went out of our way to see to make sure that we were able to get the best possible interpretation...

Incorrectly dictated and failed to appropriately verify his radiology report!

So when he said that the nodule was 8 cm - he was wrong!

It was 1.7 cm - this is a considerable difference!

No not kidding!

Granted we still have a 1.7 cm nodule that we need to deal with...but 1.7 cm is NOT 8 cm.

Yes, we still have a noncalcified pulmonary nodule that we need to figure out what it is...and yes, we are still not testing positive for an infection as a possible cause, BUT at least we are about 6 cm smaller than we were originally told.

So...we wait...

we now wait 6 months for another Chest CT Scan...

to see if it is bigger...

or calcified...

we wait...

and for the girl that couldn't stand to wait till the 30th,

I am fully able and willing to embrace this long asana wait,

Alpha may be slightly miserable during this time,

but we will do it,

we will wait,

so, yes we still have some remote 10% chance that it could be cancer,

but for now,

for today,

this feels like a sunrise,

a lifeline,

a blessing,

a possibility,

a chance...

ours.


In the meantime,

namaste.

She Is Just Not Sleepy

So, I can't sleep right now.

(for a number of reasons)

Realistically, Number 1 would be "Because I have been drinking."

Numbers 2-infinity will be discussed later.

Number 1 - "Because I have been drinking."

Thus the late night/early morning partnership of filoli and laptop.

Tonight, or last night, we had a couple of social events we needed to attend. The first was a fundraiser that we go to every year and my parents are quite active in this organization - so attendance is mandatory. The second was originally a social event for just me (a bachelorette party for a dear friend, who also has been Alpha's friend since they were 3, or born, or something). Since I ended up drinking more than I had anticipated at the first event, Alpha was saddled with the responsibility of driving Miss. Tipsy to and from the bachelorette party.

On my experience spectrum for tonight I have "stealing wine from other table at dinner since they are all fundamentalists and wouldn't drink it anyway," "determinedly circling silent auction table in awe that unnamed bidder 247 is jacking me on the only damn thing I am interested in," "blissful private stolen moments and jokes with my husband at the table," "a gaggle of girls giggling over confectionery penises (peni?)," "disconnected perching on stranger's couch watching dear friend open lingerie present after present and feeling simultaneously like an ass for forgetting to buy something and justified because why the hell are they giving presents at a bachelorette party-where is that jello shot tray again...," and "long deep exhale and divine happiness to see Alpha at the door to pick me up and take me home."

In case you were wondering, the CT Scan did not go so well.

I had a list, a list of words that I was going to be more or less comfortable with if seen on a radiology report, a list of words that I would be relieved by, a list of words that might force me to be a bit more proactive even if others felt I was excessive or overly concerned.

On Thursday, when we received the CT report I was shocked to see the worst possible combination of words:

Noncalcified Pulmonary Nodule

other

smaller noncalcified pulmonary nodules

as well.


What I did not put on my aforementioned list of words that I would be cool with was numbers.

Hello, McFly, anybody in there?!

See, the chest xray identified an pulmonary nodule of .4 x 1.6 cm.

No.Big.Deal.

Quite small actually - all good.

But

but the CT Scan found,

the CT Scan

found

a multilobular nodule measuring

roughly

2 x 8 cm.


8 fucking cm!


So what do you?



What is the best patient advocate response to all this?

You get your husband to a thoracic surgical oncologist specialist as fast as you can.


I had this a-ha/oh shit moment this afternoon and then again a few minutes ago that woke me up that part of my trouble with researching this issue is that I keep researching "small noncalcified pulmonary nodule" and chances of malignancy when if fact, perhaps what I am dealing with might be some size range clinically known as greater than "small."


Today is now tomorrow - meaning Sunday - which means that I am one day closer to Monday or Tuesday which is the day(s) that we were told they would call us to schedule our consult which we were told typically occurs withing 24 - 48 hours following review of CT Scans and other materials.

[I said "really, for Eva Luna's breast cancer we had to fight to get an appointment within 6 weeks." Alpha laughs and replies "yeah, the advantage of lung cancer is that with the high turnover it is easier to get right in."]

We could be meeting with the doc as early as Wednesday - or it could be Friday - I don't know...we wait - that is the general theme of "now" - wait.

We still are not telling anyone - just a few people - oh and me with the internet ("hello, internets")...Alpha doesn't want to stress out his mother and some others in our lives right now because he thinks that they will freak out, get depressed, and could be hurt and turned inside out if by the end of all this we get a confirmed noncancer diagnosis...

I sometimes agree and sometimes disagree,

but honestly my disagreement is largely due to the fact that by not telling people,

"hey I am freaking the fuck out on the inside right now because my husband is telling me how great his life has been"

I feel as though a gravity mountain of raw nerves has been dumped on my head and I am stumbling around trying desperately to walk with this almost unbearable heaviness...

or something like that.

I need to go to bed.

This is a shit post because this is a shit topic and this is a shit moment in life

and

it is some of the best moments of life too.



You know what I mean.


I have had so many moments and experiences in the last few days that I want to get down because everything feels like water running through my hands right now...but I am thinking

that right now

I am just going to go back to bed

and see if I can actually talk about this and that and this and that other thing with you later.

[sigh]

Because right now I feel just a bit better.

Images

This is a chest x-ray of the lungs.



This is a 16 slice CAT Scan of the lungs.


Definitely better.

This is a 64 Slice CAT Scan of the lungs.



Again, a 64 Slice CAT Scan of the lungs.




In the category of "The More You Know" or "Filoli Cancer Tips and Insights" we should discuss the following:

Turns out that 25% of lung cancers do not exhibit any symptoms and are identified through routine or pre-op chest x-rays or CAT scans.

In the subcategory "WTF," lung cancer survival rates are dramatically lower than other cancers despite advances in survival research.

More specifically:

Since the enactment of the National Cancer Act of 1971 (Public Law 92-218; 85 Stat. 778), coordinated and comprehensive research has raised the 5-year survival rates for breast cancer to 88%, for prostate cancer to 99%, and for colon cancer to 64%.

However, the 5-year survival rate for lung cancer is still only 15%

(as in 1971).

Without a doubt a similar coordinated and comprehensive research effort is required to achieve increases in lung cancer survivability rates.

60% of lung cancer cases are now diagnosed as nonsmokers or former smokers.

Lung cancer mortality reduction should be made a national public health priority.

Without a doubt early detection saves lives.

Presently, all post-5 year survivors are accidental survivors who were asymptomatic and CAT scanned or x-rayed for other reasons and a careful radiologist identified a possible issue.

5 out of 5 lung cancer survivors recommend CAT Scans.

As such, we currently started the authorization process today with our insurance company for Alpha's CAT Scan.

As though you had to ask - yes, the 64 Slice.

Are you kidding? Do you really think I would tolerate anything less?

So, tomorrow I have a gig to chat about health care.

What are the odds that I may be a bit more snippy if I am fighting with the insurance company regarding approval of the CT Scan?


In my inner soul birdhouse I continue to sing "this is nothing."

But - I am already forever changed.

These facts are unacceptable.

For my family, for your family, for all of us.

We can change this.