Category Archives: Ovarian Cancer

Ugh, Hair Loss

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Chemotherapy for ovarian cancer usually means hair loss.  I got off very easy in that regard during my initial treatment 2 years ago.  Now? Not so much.  I have hair coming out in clumps and am nearly bald at this point.  Thank goodness I have some wigs and know how to knit and crochet!

DH is taking it a bit harder.  I think it brings home that the cancer is something we have to deal with.  I dunno, I think I won’t look half bad bald.  I just need to lose about 40 lbs.

My CBCs were good on my blood test yesterday, so I only have to have the appointment with my doctor / nurse practitioner (whomever we see), before the April 3rd  chemotherapy.

Action Plan for Ovarian Cancer Recurrence – Finally

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Finally have a plan of action. My gyn/onc NP agreed with the idea that the psychological harm of the wait for symptoms – yes, ascites (!!!!) – was too great on most patients.

My blood pressure is normally 120/70 or less. My blood pressure after the consult with the generalist oncologist was 145/80. That is not conducive to overall good health despite the cancer!

I realize intellectually that chasing the CA-125 is not really what the research sees as necessary, but it is something my gut tells me is the right thing to do before ascites comes to visit.

I’m getting a port in the next week, and then starting chemo on March 5. I may even get away with as little as 2 chemos. I’ll probably still have to keep the port for some time.

I’m also doing a bunch of crochet / knitting to prep. I think there are gonna be a lot of fish dishcloths in my future.

NED Left the Dance Floor

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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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CA-125 And Blue Shield of California Being Dipshits

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Well, I’ve got good news and bad news for my birthday.  The good news is that my CA-125 was 12.  Even my glucose, which had been climbing, was on the low side of normal.

Now, the bad news.  Blue Shield of California is still claiming that I should have been prescribed a drug that was not available at the time of my treatment and thus, will not pay for the treatment.

I’m pissed.  I’m not above doing everything in my power to legally bring an end to the existence of this bunch of crooks.

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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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Counting Less When Not a Mom

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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?

A Strange Encounter

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I had an appointment today with my Dr. Professor. It was to go over my bone density test. Turns out I am between normal and osteoporosis. This is known as osteopenia. I am to start taking Os-Cal twice a day for a few months before being checked again. I have a family history of osteoporosis – combined with a lot of lupron, hysterectomy, and chemotherapy – I want to be aggressive in preventing osteoporosis.

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?

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!