NED Left the Dance Floor

2 plus years out from OvCa diagnosis…

This is not the blog post I was expecting to write.

I didn’t expect to get a CA125 of 115 on January 31st..

I didn’t expect to get a CA125 of 304 on February 14th.

The MRI shows nothing –  except a small renal cyst.  No further information in the report.  This worries me due to some studies DH and I have run across.  It makes me wonder if the mets are hitting my kidney.  Or is just a benign cyst that has nothing to do with anything?

The oncologist didn’t even note that in our consult.  Rather, Dr. Professor presented me with all the information about how asymptomatic patients don’t really benefit from chemo any more than those who wait for symptoms to present.  We are talking about the cancer that whispers.  What is symptomatic?  Upset stomach? Twinges of pain?  Weight gain? Weight loss? Frequent urination?  How can you know for certain you are asymptomatic?

Honestly, I think he was firing me as a patient. Something I don’t think DH caught on to. I think this is an area that is too far out of his expertise. He said as much.  He muttered something about mis-staging at the original surgery.  The thing is, according to a new group of studies every single ovarian cancer ever has been staged incorrectly. They think it really starts in the Fallopian Tubes somehow.  I’m not clear on the how. 

Of course, I’m allergic to all those corn-based things used in PET scans.  This is the scan that can see microscopic disease.

I have an appointment with the Nurse Practitioner at the Gyn/Onc, Dr. Sunshine.  She seemed to agree with our assessment that if CA125 nearly tripled, chemo might be a good idea even if there are no obvious symptoms yet.  (She works hand in glove with Dr. Sunshine.)

In the back of my mind I keep hearing the statement that Dr. Sunshine said about the tumor he found during surgery: “Fastest growing in 25 years of practice…”  In a matter of 3 months I had no cysts to a cancerous cyst. In a matter of a little over a week I had ascites.  Do I really want to wait for obvious symptoms?

Early symptoms are so very subtle, so easily mistaken for just the part of life.

No, this isn’t what I was anticipating thinking about now.  It wasn’t what I thought I would be blogging about in this year.

Now, I am writing about NED leaving the dance floor.

Most Amazing Post About Women and Motherhood

On Ravelry, someone posted a link to this really wonderful blog post by Havi Brooks: Bolivia. It is a metaphor about the complexities around wanting, getting, the drive, and what it all means to either building a family or not. 

Bolivia is one of the most insightful essays I have ever read in regards to this issue that touches so many in so many different ways.

I recommend that everyone go read it – no matter where on the family-building, or not, stage you are at. 

More Insurance Woes

Insurance companies were created to make our lives miserable.  This is something of which I am convinced.

I should amend that statement.  For-profit insurance companies were created to make regular folks miserable.

What has made me say this now?  DH decided to appeal a denial of 500 USD.  The first paperwork we saw had only one incident that came under the denial.  He appealed.  The denial came back with three incidences of something different than what we appealed originally.

What is being denied?  Something that had been previously covered when submitted.  The insurance company in question is notorious for this sort of behavior.  While I understood why DH wanted to appeal, I felt that eating the 500 USD would be the wiser course of action due to the insurance company’s reputation.  (He, rightly, felt they should fulfill their contract.  Me?  I’ve dealt with this sort of absurdity with my allergy situation since I was 18, I knew they would go back and find further stuff to deny.  500 USD was, in my mind, a pittance to what it could have been.  Perhaps I have already been defeated by the insurance monster?)

So, I now have a very irritated husband who is dealing with the insurer and his workplace representatives while he is debating (with himself) whether going further with this appeal may lead to them denying even more. 

As a note, yes, I am behind in my postings.  Everyone I know decided to be born in July or August.  As soon as I attend one birthday, I have another to deal with.  And none of the birthday people involved are able to answer the question, “What do you want for your birthday?”  They all hem and haw – but will be disappointed if they don’t get something that they actually want! 

Port-Free and In Remission

Monday, June 14, 2010 I got my port out. The gynecological oncologist and the hematologist / oncologist said ok! I made the appointment to remove it fast.

Removing a port is an in-office procedure. They give you a numbing agent, make a cut, and pull it out (with care). Then they stitch you up. I had a rather common reaction while they were pulling the port out – I almost fainted. I got to sit still for 10 minutes or so afterwords to make sure I didn’t pass out walking out.

I guess the screams of pain when they gave me the local had already scared too many waiting patients. I have really sensitive skin.

I bet some of you are wondering what my CA-125 was? It was a completely normal and remission fulfilling 10!

Of course, my pekinese is irritated at me for not picking him up while that wound heals.

Now the irritating news.

It seems I have a rather common tongue fungal infection that the periodontist found. He sees it in cancer survivors all the time. I have one problem. Even though Majic Mouthrinse is compounded the suspension solution used uses benzyl alcohol (allergic) and two corn derivatives: sorbitol and glycerin. I tried to tell the periodontist this while I was there, but he said it was compounded. Now I have to figure out what to do to treat this problem.

Roundup’s inert ingredients can kill human cells, particularly…

Roundup’s inert ingredients can kill human cells, particularly embryonic, placental and umbilical cord cells… [Link]

How many pregnancies ended due to residual toxins – lower than are used in fertilizer – from Roundup?

I know that I was exposed to many of these chemicals growing up. I also lived in a rural community and worked at an extension university. My parents both grew up in farming and mining communities. Scientists still don’t know how long those chemicals stay in our systems. We have no way of knowing if this is killing our mitochondrial DNA as well.

More research needs to be done on the long-term effects of all the chemicals we have been putting into our environment. We need to stop throwing things into our environment without thinking about what we are doing to our future – if we end up having one.

This is just another plank in the ever growing list of things we have been doing to destroy ourselves. When will we wake up? When will we think about how our actions create effects for the future.

Back Went Out

I had big plans for this week. DH has the week off. I thought I would be able to get some stuff cleaned up that takes a person with more strength than I have. Sunday made a different decision for me.

I went to take SMR’s leash off after a walk and my back seized in a spasm. If you have ever experienced such, you know what I am speaking of. If you haven’t, well, You don’t know how lucky you are. I have been downing muscle relaxants and treating my back gently ever since. Of course, this had to happen on Memorial Day Weekend so I couldn’t see the chiropractor until today. By this time the nerve had been pinched and the pain radiated down my leg and up my side. This made the adjustment such that it only gave a little relief. I will have to go back again for a second adjustment tomorrow. Luckily, the chiropractor is actually walking distance – not that I will be walking there!

Did I also mention that I have job interviews and such this week? Not to mention my 3 months oncologists’ appointment? I am beginning to wonder what in the universe I managed to piss off recently.

Oh, I have actually been doing some research for a blog post about blog posts as I am thinking of cleaning up my blog (going forward). It is sort of hard to concentrate on anything when every small movement causes back twinges.

Not the Right Adoption Story? Can’t Be Family? Huh?

Salon ran an opinion piece on a movie called Mother and Child. First, I did not and do not plan on seeing it. I was simply struck by the comments section.

How many people dealing with infertility hear repeatedly that they should “just adopt” or “adopt” or “there are millions of children right here in America” or whichever sophist cliché is in vogue that day among the ill-informed?

What happens when an adoptive mom talks about how the media treats adoption as a total tragedy and dismisses the adoptive parents as part of the triad?

The internet trolls come out from under their bridges in droves. The vile accusations of narcissism when someone writes an opinion piece is truly silly. What opinions on media are not, to some degree, narcissistic? You are always speaking about what you the reviewer found good or bad. Makes it kind of difficult to not see things through the lens of your own life experience. It is simply human nature.

The nonsense that is so often spouted came out, and evidence that perhaps those who comment are not the brightest or most learned is evident when someone accuses Sandra Bullock of adopting a foreign child. Last time I checked Louisiana was still a state – Napoleonic Code, but still a U.S. state. (The accusation that Ms. Bullock did this to keep her figure is truly appalling when you consider some accidental statements she has made over the years indicating she is part of the infertile community.)

Only one person dared to say that the judgments were so nasty because there is still an unreflective worship of the biological tie that makes people believe that a child not borne of the parents is not truly their child. I have never really understood this attitude. Blood is not what makes a family – unless you count the blood spilled while sewing, cooking, falling, and living. It is spirit.

Two words have been adopted into English to more clearly define what family really is – ohana (from Hawaiian) and whanau (from Maori). These words have come to mean an all-encompassing idea of family that includes not only blood and adopted relations, but those who we choose as family.

It has been said that family is who must always take you back. For some, this doesn’t include a single blood relative – or an officially adopted one either. Most of us find this group in our lives. For a very few unfortunates, this isn’t true. Perhaps, those who write against all sorts of family-building practices are those who have never found family.

A Tribute to the Infertility Blogosphere’s Center

This is dedicated to Mel, the center of the infertility blogosphere – and keeper of many dreams. (I never did follow directions well. This may be why I have written instructions for a living.)

The Center.
Community built and rebuilt.
Each silo having its own mentor.
One way it would tilt.

A scattered neighborhood.
Chaos matched in pain.
Who could gather this brood?
What could she attain?

Then came the Honeybee.
Gathering into her honeycomb,
Branching out as a tree,
Comforting shade from her leaves.

Come fast and near-
A cry from town’s center.
A storm of tears
Comforted by this gentle weaver.

Loss of what never was binds.
As she, and we all, weep.
Kindness winds
Into hearts broken now come to her keep.

I find I can’t comfortably take part in the Celebratory Project at this time, but I thought that this – and maybe a little more – I could do.

Jillian Michaels, the Shame of Infertility, and Hostility

Let’s start with the body shame women of all types experience for not being perfect. No one can doubt that Jillian Michaels has dealt with this. She was a “fat kid.”

Now add in a culture that worships perfection in all its forms.

Don’t forget to add the obsession with celebrity pregnancies and babies.

Add the continuing trend of piss poor reporting through out the traditional media.

Very few people understand just how exhausting a 3 hour interview is for both the interviewer and the interviewee. Ms. Michaels stated that she hedged when asked about pregnancy at the end of her interview with Women’s Health Magazine because of “a lot of shame about the answer.”

What was she ashamed of? PCOS and endometriosis.

Jillian Michaels repeatedly referred to being “panicked” and “ashamed.” She considered this topic private. She was shocked at the question. Being tired gave her the opportunity to put her foot in her mouth and inadvertently offend millions of women.

Ms. Michaels states that the reporter used the word “aversion” in regards to pregnancy. Perhaps Ms. Michaels had used the word “aversion” in reference to hormones and surgery. I can totally understand someone being adverse to both.

There is a great deal we still don’t know about the reproductive system and how it works. Both endometriosis and PCOS are mystery diseases for many physicians for whom they should not be. Is it all that hard to believe that someone involved in the health industry may not be comfortable with putting her body through that when she already has to do things to manage those diseases?

What I found most disturbing were the comments – including from women who suffered from one or both of the diseases that Jillian Michaels has revealed. One commenter on an AOL board accused her of lying because the commenter was able to have kids with endometriosis so saying endometriosis causes infertility is bunk. Endometriosis is a very varied disease with all kinds of outcomes. PCOS, from what I have read, is the same way.

I saw some of the same hostility on Momlogic from a few posters.

When even the women who have suffered from endometriosis, PCOS, and infertility can’t find empathy for someone who has suffered a variety of body image issues – with which pregnancy does fit as one – is it any wonder infertility brings feelings of unfounded shame?

Counting Less When Not a Mom

Today is hard for women who did not choose childlessness. It makes us think of all the ways in which society sees us as less than those who have had children.

I do not think this is a conscious thing. I think it is something written into society.

You would think that those servicing communities where the vast majority of women in the community don’t have children due to cancer of the reproductive organs would be more sensitive about this. Remember, simply being unable to have children radically increases the risk of ovarian cancer. How disturbing it was to go to the Ovarian Cancer National Alliance home page and found Tell us how you you want to honor a mother . . .

Ovarian cancer. Yes, some women are lucky enough to have had families. Most are not.

I decided to visit the other major charity for ovarian cancer, National Ovarian Cancer Coalition, and they had many links about mothers and motherhood. It seemed especially cruel.

I stopped here. I was afraid of looking for information about uterine cancer at this point. I already knew that all of the cancer societies use motherhood – even for those for whom it is out of reach – to pull at the public’s heart strings. Do they not realize that that sends a message of non-mothers not being as important?

This goes through everything. After my surgery last year my husband and I poured out our pain around not having children to a nurse practitioner who then immediately started in about women with small children. It was as if she hadn’t hear a word we said.

The support boards for cancer have many more mothers writing then childless. I really believe it is because the mothers fill the boards with how their children make everything worthwhile. Does this mean that those without children don’t have anything to live for? To strive for? That is a message that can be heard if you read it at the wrong time – in the wrong state of mind.

I find that certain kinds of pain can be understood by those who have also experienced it. There is a story I’m not sure I told from last year. The first ultrasound tech I saw told me how she and her husband had been pursuing a child. It led to an abdominal pregnancy and total hysterectomy. A failed adoption followed. I know now she was trying to tell me that I wasn’t alone even though many would make me feel that way.

In how many ways does society unconsciously make the childless feel like less?