Category Archives: Medical

NED Left the Dance Floor

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10

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.

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More Insurance Woes

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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! 

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Back Went Out

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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.

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Cancer, Ultrasounds, and TMI

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I’ve been having some issues due to last year’s surgery for ovarian cancer. What I’m about to go into may be too TMI for some folks, so turn back now if you are uncomfortable about bodily functions. Cancer takes a lot of things away – and sometimes aftercare reminds you of everything that has been lost.

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.)

Celebrating or Panicking, Maybe We Should Wait and See

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This past week Health Insurance / Health Care was finally passed in some tortuous form. There is good and bad with it as there is with all legislation. Personally, I’m not celebrating and I’m not panicking. I’m waiting.

Now, the law is structured in a way that whatever regulatory agency that may be given the responsibility to oversee it can do so. The biggest problem with that? So was the banking and finance industry. Will it be regulated? I really don’t know yet.

I like some of the changes – almost everyone has to buy or pay a fine. Sorry, but I think that is a public good and have no patience with libertarians who scream and holler about this governmental mandate.

I also like the no pre-existing exclusion that went into place. I just wish that there wasn’t a 4 year gap for adults. And, I wish it were retroactive due to how crooked insurers really are. But, well, I have a bit of a vengeful nature when it comes to true evil.

One of the big things I don’t like? The way the subsidies are working. There are going to be a lot of folks who border that upper working and lower middle class line that will not be able to afford either insurance or the fine.

Another thing I am not too happy about? Antihistamines and other over-the-counter medicines will no longer be allowed on FSA and HSA expenses. There are a lot of people for whom those are major expenses.

The Christian Science Monitor has two great articles on the Health Care Reform:

Oh, and just as an aside, here is an article that goes into why I – and many others – can no longer take Republicans seriously:

It pretty much summarizes why the panic coming from the Right is rightfully ignored by almost anyone with a brain today.

Also, when Attorney General Cox in Michigan filed his suit against the federal government’s health care reform, Governor Granholm ordered him to file a suit against himself for wasting state money.

The Universe Conspires

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Last week Monday I tried to get a prescription refilled. This particular drug is not supposed to be stopped suddenly, so I called three business days prior to running out. I even got a call back to clarify what I needed.

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.

Scan Result and Avoiding Lovenox

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The scan results from my CT Scan on Friday, 11/13/2009 showed no sign of disease. I found out when I saw Ms. Clarity at Dr. Professor’s office.

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!

Post-Chemo Gynecological Surgeon Follow-up

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We saw Dr. Sunshine Thursday, November 5. At said appointment I found out what my post-chemotherapy plan is going to be. First, I will be on the pain patch for at least another three months – until my next appointment with Dr. Sunshine. The most disappointing part? I have to keep the port until April 2010. This means having Lovenox belly. I even admitted that there are days I can’t find anyplace to inject the stuff. Dr. Sunshine told me I’m not the first, nor will I be the last, to have that issue.

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.

Waiting Room Observations

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I was struck recently by the differences between the way the waiting rooms at the oncologists’ office and the reproductive endocrinologists’ office.

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?

Final Chemo That Almost Wasn’t

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Insurance. My oncologist called at 2:15 the Tuesday before my last chemotherapy telling us that the insurance hadn’t paid for anything even though the insurance company was saying we were covered.

The oncologist was ready to refer us to a cheaper center. (This made me mad. I dislike the assumption that I cannot afford something when there were many ways in which we could have worked this out with everyone getting paid properly. It is good DH was the one dealing with this. Funnily, both he and I came up with the exact same solutions if there had been more issues.) At this point, the options were, float the money (thousands) to the oncologist, go to the unknown center, or, delay chemo a week to see what the devil was going on.

DH was left alone to deal with this as I had just gone off to the chiropractor and to run some preparatory errands. He got on the phone to the customer service number to try and figure out what was going on. Each person he talked to told him that, yes, indeed, I have coverage. No one could answer what was going on. Well, that is, until he had been transferred 7 times. On the seventh transfer, he found someone who could look into it.

I walked in the door and was greeted by this. Of course, this was not enough of a distraction. DH has a friend who is having major medical difficulties, and the “Check This Person Clause” had been invoked over instant messenger. It seems that folks were very worried that the news that the working diagnosis (for a year) was no longer the working diagnosis. Somehow, between phone calls, DH had managed to go over there and check on him “without him knowing that we asked you to check on him.” (I don’t know why people don’t want others to know that they care about their friends. I think it is a guy thing.)

So, DH instructed me to create a login so we could see my claims. (Yet another misinterpretation of HIPAA causing undue problems. Even though it is DH’s policy, each person has to have a separate ID. No other policy I have ever had did this. It is stupid.) We were shocked to open several “finalized” claims to see that they had been finalized to $0.00 USD. Yes, zero amount had been the amount paid and finalized as if covered. The insurance company had, somehow caused my name to become disassociated with my policy.

I still showed up as being on the policy in most places seen by both the insurer and the medical professionals. I even had the coverage. But, somehow, claims were being put through at zero dollars. No one who was involved in this had ever seen anything like this fiasco before. As usual, I found something new to cause issues.

Now, lest anyone think it was easy to get this figured out. I had to have the doctor, his biller, DH, my case manager nurse, and DH (worth mentioning twice as he was on fire), haranguing these folks since I was scheduled for my final chemotherapy within 48 hours!

They are still sorting the mess they made out. This was 100% the fault of the insurance company. They even admitted it was 100% their fault. This was not the first mess up to happen due to their IT systems not being very well managed. I have had to inform other providers that they are redoing all the claims from August forward due to this mess!

As to the friend? He seems to be doing ok despite having his medical situation suddenly get more complicated again.

I will tell of the final chemotherapy at another time. I expect that DH may comment on this post since he has a better grasp of what happened than I do since, well, I had to take dexamethasone the next day and that just makes me nutty.

Note: Yes, the reviews are a bit wonky at the moment. I haven’t gotten a chance to fix them as I’m still recovering from the Final Chemo That Was.