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! 

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.

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?

Here is the TMI part:

I have been having issues with my bowels. What can happen after extensive abdominal surgery is adhesions. Now regular readers from the infertility and cancer blogospheres are probably familiar with adhesions and some of the things they can cause. Well, one of the things adhesions can do is block one’s bowel movements from being as easy as they should be – and even, rarely, block them altogether.

The last time I went in to get my port flushed, I mentioned that I had been having intermittent pain in the area the tumor had been found. Associated with that was recurring constipation with very painful bowel movements. Nothing like wanting to scream in pain as you are moving your bowels. My first thought, being the optimist I am, was, “shit, the cancer is back.” The nurse, doctor, and PA were all saying “adhesions.”

End TMI part.

We took my CA-125 and it came back at 10. That was a major relief.

I moseyed on over to get my ultrasound and CT scan done at the hospital where I have had my other films taken. It is good to go to the same place so they have comparisons. Of course, I have to remind them that not even when I was in the hospital did anyone want to give me contrast dye, so, yes, I was able to do both on the same day.

The young lady who was doing my ultrasound was quite friendly and we were talking a bit. She had taken my history, and, well, I think she got a wee bit too relaxed. I asked her what field of ultrasound she wanted to continue in as she was an intern. She mentioned specialty OB/GYN. No problem.

Now, anyone who has had an abdominal ultrasound knows what it is like to have pressure on your bladder from all of the water they make you drink beforehand. I was saying how much I wanted to go pee…

“Can you imagine what it’s like for the pregnant ladies.” stated the ultrasound tech who had just taken my history.

My reply was an even, “That is not an appropriate thing to say.”

She became very apologetic and said, “I am so sorry, and I just took your history, I am so sorry.” She was genuinely apologizing.

I told her it was ok. She said it wasn’t ok. I tried to convey it was better to have happen with someone like me who has become sort of used to dealing with these faux pas instead of someone in a very fragile state of mind. I was mostly thinking of someone who might have just miscarried or just found out she was infertile.

I soon found that I had a new ultrasound tech. I know that it is hard doing this. I really did not want to make her feel really bad, only use that time as a teaching moment.

Did it sound like – from my description – that I was too harsh?

Anyway, I found out soon whether I am going to need surgery for the adhesions or not. Hopefully they will correct themselves as the issues don’t seem to be as bad as they were – but I will admit to an incredible amount of gas of late.

(And, yes, these issues are part of the reason I haven’t been writing as much. I have also found a new – to me – entertainment venue which I will be writing on shortly.)

On Thursday, I went to get my port flushed – a way to avoid L.ovenox. The nurses took one look at me and made me see the PA, Ms. Clarity. I was informed I had the stomach flu that has been going around. As per usual, she asked me about any prescriptions I might need. For some reason, I had a hunch that Dr. Sunshine’s office had not called in my prescription. I was right.

I called Dr. Professor’s office and asked that Ms. Clarity call in the prescription. I then went home and found myself sleeping until the next day.

My DH went to pick it up later that night to find that the pharmacy’s fax had died and there was a back-up of unfilled – possibly lost – prescriptions.

The next morning, the pharmacy did not have the prescription so DH called to find out why from Dr. Professor’s office. He had been on the phone trying to figure out what had happened to the prescription all day when I woke up very late. He had left multiple messages with the office’s staff and the pharmacy.

I called the pharmacy and explained my situation at about 6:30. Even showing up at about 9 to see if it was there then.

Luckily for me, due to the nature of the drug, the pharmacy was allowed to give me a 5 day emergency prescription fill.

So, on this just past Monday, I went to Dr. Professor’s office to get the prescription in hand. The medical assistant who had taken my husband’s message was most apologetic and said I could yell at her. I didn’t. She went to yell at Ms. Clarity.

Ms. Clarity said she had used the electronic prescription service to send it in at 8:42 PM. I asked if she had sent it to the right pharmacy as the pharmacy had said they would call when it came in. She called the pharmacy and they said it was ready for pick-up.

I went to my pharmacy and they didn’t have it. There are two pharmacies on the same road – but in two neighboring cities. The prescription was at the wrong store!

Why did it take a whole week to fill a simple prescription? Is the universe conspiring?

Oh, on top of that? The hard drive with all of my data – knitting patterns, old documents, back-ups, etc. – has become unreadable.

Today? We have a snowstorm to stop me from going to get a new hard drive for my laptop as it is quickly becoming too full.

I think the universe is conspiring to make my life much harder than it need be. Perhaps SMR (my pekingese) has the right idea of sleeping all the time.

Just to be clear. I don’t really assign blame to anyone as this really was a comedy of errors.

While waiting I ran into one of my former chemo buddies, C. C had a very traumatic holiday. Her son lost one of his 2 year old triplets in a freak accident. For some reason – I know this was meant in kindness – she felt she needed to share this with me. She had remembered how traumatized I was about losing the ability to have children. I really wish there was a way to stop these kinds of pain, there isn’t.

I was not offended, or even surprised by her need to tell me of this. I just wonder what drives all of us to share our pain with one another. Is grief the thing that actually makes us need one another?

While I was there, I ran into one of the women I went through chemotherapy with – and realized I hadn’t returned her email in over a week. I’m so far behind in email that it is utterly ridiculous. I think it has to do with how much stuff has been going on around here. (A sick puppy dog – allergies and bladder stones – is nothing to sneeze at! Especially when your husband has seasonal coughing which he will not see a doctor for.) I will take this opportunity to apologize for not emailing folks. Eventually, I will get through my inbox.

Anyway, I spoke to Ms. Clarity about the fact that I needed a break from lovenox. My tummy just feels inflamed – and is bruised. So, I got the option of coming once a week to get my port flushed. I took that option as I really, really need a break from taking it!

Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America by Barbara Ehrenreich is an interesting attack on the magical thinking that is inherent within the positive thinking movement.

Ehrenreich starts with something I am familiar with, the “every cancer patient must be happy and positive to be cured” nonsense. I was rather surprised that she did not include the growing body of evidence that that thinking is actually detrimental and even harmful to patients who are trying to deal with very complex and often “negative” emotions. (I hold to the idea that emotions are not positive or negative, it is how we deal with them). Her observations about the “pink” movement were dead on, though.

One thing that bothered me was how she did not go back far enough to address the origins of the magical thinking. Instead, she decided to lay blame on the Calvinists. The thing is, Calvinism was a reversion to an older idea that gods and goddesses punished and rewarded their followers according to how “good” that person was. This is an ancient idea that Job was written to debunk. It saddened me to see that she did not recognize how old magical thinking is.

Ehrenreich also went into how the magical thinking of positive thinking has damaged the business environment for workers and investors. Companies spend billions on positive thinking seminars to brainwash workers into believing if they just work harder and think positively they will not join their former colleagues among the unemployed. This is also used to make people not understand that collective bargaining is the only way to fix the problems that are endemic to the United States’ employment situation.

Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America goes into the infiltration of the power of positive thinking into supposed fundamentalist Christian evangelical churches. This is used to undermine the message of compassion and caring for one another that the Gospels taught. Perhaps this is the spirit of anti-christ that the Gospel warns. It certainly is not within Christian teachings to focus on material gain – which is central to the tenets of the positive thinking brigade. Christianity is not supposed to be focused on the rewards of this world, after all.

This book is worth reading as long long as it is remembered that it is only a beginning point to understanding how bad the positive thinking movement is to the very fabric of society.

Maybe this basketball player might be interested in increasing awareness and research funds?

For the first year I get to see Dr. Sunshine every three months for blood tests and a physical check of my abdomen and neck. Year two will be physical exams every 4 months; year three, every 5 months, and so on. The blood test will probably be taken at Dr. Professor’s office whenever I get my port flushed – while I still have it. Every six months I get to have a CT scan. The problem? There is no contrast dye that I can safely use.

No contrast dye makes making that appointment a bit of a chore. I have to repeat the thing about no contrast dye many, many times. For instance, when I called to make my appointment for my first CT scan post-chemo I had to tell the woman 4 times that there was no contrast dye involved. I’m pretty sure that they have a script and I just don’t fit those scripts.

DH then asked about the hot flashes. Due to my thrombophilias I can’t use hormone replacement therapy safely. I was given a prescription for effexor. It seems that there has been a great deal of success in treatment of hot flashes with it. My problem with it? I don’t like the list of side effects. I don’t really consider the hot flashes that bad unless I’m actively having them. I will say that the last week or so they seem to be being more frequent, but that could just be my imagination.

Part of my plan for post-chemotherapy is to restart Weight Watchers and get more exercise – including weights. The last time I tried to start that I found out I had ovarian cancer. Hopefully, it will go better this time.

It is an incredibly entertaining event with all styles of Middle Eastern Dance represented – and even a Western dance style or two thrown in. The actual show is in 3 acts – with dinner served between acts 1 and 2. There is lots of glitter and glam as well as good food. DH and I try and make it every year.

Here is the information from PrincessMadiha.com:

Princess Madiha’s 18th Annual Charity Benefit will be Saturday, November 7, 2009.

This annual event includes a Middle Eastern Dance Workshop ($55 USD before Oct. 22; $60 USD after Oct. 22):

Later that evening enjoy a family-style Middle Eastern dinner with local and international Middle Eastern dancers providing a night of entertainment. ($55 USD per person before Oct. 22; $60 USD per person after Oct. 22.)

To purchase tickets by credit card, please call the St. Jude Office at 1 800 5533 or visit htt://www.stjude.org/princessmadihap.

Pre-purchased tickets will be held at the door.

Where?

Farmington Hills Manor
23666 Orchard Lake Rd
Farmington HIlls, MI

For additional information call Princess Madiha at 1 248 924 2717.

One was silence. The other was camaraderie. I think many readers already know which was which.

Though cancer comes with death associated with it, at both the gynecological oncologist and medical oncologist patients seek one another out and talk to each other. All of us have different diagnosis and prognosis. Despite that, we all are faced with putting these poisons in our bodies. This shared experience makes folks want to connect – even if superficially – with one another.

It is interesting that the chemotherapy room is set up in a manner to encourage interaction. It was a half-circle of chairs with a television in the middle. The TV was invariably turned to something inane like a cooking or makeover (of whatever sort) show. Discussions were kept somewhat light as the drugs caused our brains to be less than focused. You take benadryl in an IV and see how alert you are!

Contrast that with the waiting room in the fertility clinic. Men and women wait with downcast eyes – afraid to hope. Quiet conversations are only between couples who have walked in together. Those who violate that are looked at askance. There is a dread that exists within those walls, a despair that doesn’t exist in cancer centers where mortality is being addressed. Rather, a most fragile hope is being held – or lost – within these walls. Not everyone is going to get a baby, and most patients know it.

Why are the two places so different? And the fertility clinic so much less lively? Wouldn’t you think a place that was trying to create life would be more lively than a place that faces death daily? Somehow, the opposite is true. It is almost like cancer patients have a better ability to hope because theirs is a limited hope that society accepts as such.

I wonder if that will change, after all, there was a Monty Python sketch that was done where the word “cancer” could not be said. They changed it to “leprosy.”

Perhaps the fact that we can now speak openly of cancer – and I am old enough to remember when we barely spoke of it – is why there is such a vast difference.

Is it because we still shun conversations about fertility that the quiet dread permeates the fertility clinic’s waiting room and not the cancer doctors’ waiting rooms?