Saturday, October 26, 2013

A Real Fake Boob!!!


My surgeon finally gave me the OK to get a breast prosthesis.  This is a big deal. 

The mastectomy “training bra” I’d been wearing has only a very lightweight cotton puff to try to fill the empty space.  It’s better than nothing for going out in public, but it has no real support so it still gives a pretty lopsided effect when paired with a droopy 70 year old boob.  I’m still wearing mostly the t-shirts and knit shirts I wore living on the boat and they highlight the mismatch.  So I’ve been borrowing a few of Neal’s shirts which are big enough and hang loose enough to sort of camouflage the disparity between right and left sides. 

But now I have a “real” fake boob. 

Breast prostheses are silicone forms that have both shape and weight to simulate a natural breast. 

Mastectomy bras are pretty much like regular bras except that each cup has an extra layer of fabric to provide a pocket to hold a prosthesis.  

So now I go out looking like the old me  again  – except, of course, for the bald head.




Saturday, October 19, 2013

Hair loss (lost)

I’m officially in cue-ball mode for the next several months. 

I’d thought that I’d wait until the hair loss became obvious, but it became a big nuisance right away.  First noticed it in the shower and then, overnight, every time I turned my head on my pillow I’d get hair in my mouth and/or nose. Hair brush took more out. Just running my fingers through my hair took more out.  

So I had it all shaved off.


Just think of the money I’ll save on shampoo and conditioner! 

Sometimes hair comes back with a different texture than before. Sometimes it comes back curly and stays that way but sometimes it eventually goes straight again.

I wonder what I’ll look like at this time next year.

Thursday, October 17, 2013

Side Effects (will be updated from time to time)


Thursday, October 17 was my second chemo treatment – day 1 of the second cycle.  No problems.  Until Monday, day 5. Everything was great until late afternoon. Then CRASH.  I was in bed by 7:00 p.m. Monday night. Tuesday and Wednesday I probably slept almost 20 hours each day. I was completely useless. By Thursday afternoon it was back to normal.  Very weird.  Thursday’s blood work showed a White Blood Cell count of 0.  No surprise there. 

So far the most annoying side effect is not being able to taste anything. Neal asks what I’d like him to cook, but it doesn’t really much matter as long as it isn’t crunchy.  Crunchy stuff hurts.  
All in all, I’m very lucky so far to still have mild side effects


Shaved my head.  There's a separate post called "hair loss (lost) with before and after pics


Side effects are setting in but they are still mild. 

My taste buds have pretty much stopped working.  If you’ve ever had that numb feeling after burning your tongue with hot coffee, etc. that’s more or less what it’s like but all over.  Bland stuff has no taste at all.  Aromatic foods like onion, garlic, and some herbs stimulate my sense of smell and a sense of flavor.  Neal made Rosemary Chicken the other night and I savored every bite. 

My mouth is getting quite tender but I haven’t developed any sores yet, thank God.  It’s bad news because I love crunchy things, but it hurts to eat them. I let my Cheerios get good and soggy. 

Last week when I had blood work done, my white cell count was 1.  It should be 14 – 16.  I got a stern warning about not ignoring any fever.  I also got a prescription for a high dose of Cipro antibiotic to try to fend off any infection.  This one scared me.  But I feel good and my temperature remains normal.

I’ve finally begun losing my hair.  I don’t think it’s very noticeable yet, but a couple of more shampoos will probably take care of much of the rest of it; and I’ll have the stragglers shaved off. The good news here is that the American Cancer Society offer free wigs, scarves and caps to cancer patients. (Also bras) They’re new and come in about every color, length and style. I got two. Photos will follow in a later post when I figure out how to style them. There's a hairdresser in town who will provide one free styling - I'll probably give him a try.

Friday, October 11, 2013

Genetic Counseling & Testing


Given the amount of cancer in my immediate family and on my mother’s side, my oncologist referred me to genetic counseling.  Of greatest concern are the BRCA1 and BRCA2 genes.  These genes normally help protect against breast cancer but a mutation may, in fact, increase the cancer risk.  The mutation may be inherited from either parent; or it may be spontaneously generated in an individual.  A daughter or son who inherits this mutation is at risk and may, in turn, pass it on to the following generation.

So I filled out a family history for the genetic counseling group and had a long teleconference to discuss family medical history.  The goal was to determine whether there would be a benefit to having genetic testing.  This is a topic that my daughter, Karen, and I have discussed at some length.  We are both concerned about the likelihood of breast cancer in her future.

I’ve decided not to proceed with testing from this genetic counseling/testing group.  Here’s why.

  • Although there were many cancers among my mother’s siblings, only my mother and one of her sisters were diagnosed with breast cancer.  My maternal grandmother was not diagnosed with breast cancer.
  • Running computerized analysis models, it seems that the probability that I carry one of these mutations is less than 5%.
  • Further conversation about family health issues brought out another possibility:  Cowden Syndrome which is a problem with the PTEN gene
  • The test in question looks ONLY at the BRCA1 and BRCA2 genes – I’d get no information about PTEN.
  • This test costs about $4,000.00.  My insurance would pay all but $375.00 of that.  But I’d get only a small part of the answers I’m seeking.

But even if I did come up positive for the mutations, there’s no way of knowing whether my kids inherited it unless they also get tested.  There’s no way that their insurance would cover even part of the cost for either one of them.  They still wouldn’t know if they have the mutation.

So what to do?

23andMe may give the best information for a truly reasonable price - $99.00.  I sent for the test kit.  I don’t know whether they test PTEN, but they do test for other diseases which may be connected to Cowden Syndrome.  And they test BRCA.  If I have the mutation, this is something my daughter can follow up on without going broke.

And as a bonus, I’ll get some good info about my genetic ancestry.  Were my ancestors always Poles?  Just how much Neanderthal do I have in me?

Where did I really come from??? 




Saturday, October 5, 2013

First Chemo Treatment


The first Chemo day went very well – once the snafu at the reception desk was resolved.  Someone had apparently crossed off my name as though I’d already been called.
First my Oncologist again reviewed the possible side effects, and emphasized the danger of infections.  She’s committed to reducing side effects when it is possible and dealing with them quickly when they occur.  I have 3 prescribed anti-nausea drugs in addition to the one administered by IV plus steroids, plus anti anxiety meds. My own little pharmacy.. 

Side effects range from Annoying to Dangerous. 
At the bottom of the scale,Annoying ones include hair loss and skin and nail issues.  Next up the scale are the ones that can be managed such as insomnia, headaches, and bowel issues. Then come the tolerable but unmanageable ones like mouth sores. The lining of your mouth consists of fast growing cells – the ones killed by chemo drugs. Discomfort can be eased a little, but not eliminated. The Dangerous one is infection.  Chemo drugs attack all fast growing cells and that includes bone marrow where blood cells are born.  This leaves a chemo patient susceptible to infection.  A temperature above 100.4 is deemed a medical emergency.

Then it was off to the Chemo lounge.  There are rows of recliners, each with its own IV pole. There are also chairs for drawing blood, and chairs for those who are accompanying the patient and want to be near.

First they draw blood for an analysis to make sure that administering the drugs will be safe.

I’ve got to say than having an implanted infusion port is worlds better than having a needle stuck in a vein over and over.

Once the blood test is done and is ok, it’s off to a recliner. The nurse hung 3 IV bags and hooked them up so that she simply had to turn one off and the next one on.  First is a combination anti-nausea drug and a steroid.

The steroid also has anti-nausea properties, but is primarily anti-inflammatory as well as medicine for autoimmune diseases and some skin conditions.  Skin problems are a likely side effect of the chemo drugs. 

Next is the Adriamycin, known among chemo patients as The Red Devil.  When that’s finished, the Cyclophosphamide.  This whole thing takes a couple of hours.

They taped up the needle and tube in my port because I’d be going back the next day for an infusion of fluids and a shot of Neulasta.

So on Friday, I showed up for my fluids and shot.  After filling your body with toxins one day, you’re supposed to be spending the following two days guzzling water to get them all out of your system.  My Oncologist helps ensure this by ordering a fluid infusion on day 2.  They pumped a liter of fluid through my port.

Neulasta is a drug to help rebuild the blood cells killed by the chemo drugs.  It is given as a shot in the arm.

So as of now everything is good.  No side effects have shown up yet.  I go back next week for blood work, and then the following week for the next chemo treatment.

Just waiting for the other shoe to drop.

I wonder how long it will be before I start losing my hair.