Change in plans? Not sure? Maybe?

An update as to what’s going on for those that are wondering.

First I’m done with the hardest part of my treatment which was the A/C part of my treatment, Adriamycin and Cytoxan.  Adriamycin is super hard on the body — externally it can burn your skin so imagine what it’s doing internally!  Cytoxin has some annoying side effect (bad sinus pain and pressure) but at least it wasn’t as damaging.

Now I’m at my weekly Taxol treatment.  It’s supposed to be a lot easier than AC – and no dropped white blood cell counts. So far so good.  My legs feel a little heavy and I’m wound for sound from the steroids and sleepy from the Benadryl.  What a combination!

The first plan was that I’d take the Taxol for the next 12 weeks and then I’m D-O-N-E, but things haven’t been that simple for me.  Remember that my first diagnosis was DCIS with no chemo involved… *ahem*.  Well, now my Oncologist brought up the fact that no matter how many tests they ran on my tissue sample, it keeps coming up HER2 equivocal. (What’s Joanna talking about?)

In simple terms, when they test a tumor after surgery (or a biopsy pre-surgery) they test for three things:   ER, PR, and HER2.  Estrogen, Progesterone and HER2 Protein.  Depending on whether + or – for each of these depends on the chemo and the course of action.  The tests for ER and PR are pretty clear cut.  HER2 testing is relatively new and there are new tests and guidelines over the past few years.  They even approved a new chemo drug for HER2+ cancer last year, Perjeta.

My Her2 status means they really don’t know what to do; I fall into the “lucky” 5% of Breast Cancer patients.  For HER2+ cancer there’s a drug called Herceptin which was approved for use in 2005.  It’s NOT chemo.  It’s called targeted therapy and I’m amazed at how Scientists figured this one out.  If you’re curious how it works, this is a link to the video put out by the drug company.  Warning, big scientific words used ;)

My Oncologist isn’t comfortable with my status and so during her weekly meeting with the other Oncologists and Pathologists they brought up my case for discussion (makes me feel special).  The Pathologist decided to run more tests on what they removed from my lymph nodes.  If it’s negative, I’m done by July.  If it’s positive or still equivocal then I have 9 more months of going to the hospital every three weeks to get Herceptin.

The good thing about Herceptin is that it doesn’t cause the nasty side effects.  Hair grows back and things start returning back to normal.  The bad thing about Herceptin is that it can cause severe heart damage (in about 5% of patients) but it is reversible.  This is why they make patients have an echocardiogram every 3 months while on Herceptin.

Now I wait for the results of my second tests which should be available next week and now you know more than you ever thought you’d ever know about Breast Cancer treatment.  It’s not the scary bogey man drugs that people think it is.  And in cases like mine, curable when caught early and a quick course of treatment is taken.

There are a couple of things that make me sad thinking that this would extend through April of next year, maybe missing a trip to Puerto Rico, and having to have this port in for that long.  It looks like a little alien three fingered hand trying to push out through my skin (no, I will not post pics) and it’s uncomfortable.

Finally –as always, thanks everyone for your support!  It has helped immensely during this rollercoaster!

 

An interesting thing happened on the way down to Florida…

I learned a new word: Neutropenia-  (noo-troe-PEE-nee-uh) is an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections, particularly those caused by bacteria and fungi.

The threshold for defining neutropenia varies slightly from one medical practice to another. Neutropenia in adults is generally defined as a count of 1,700 or fewer neutrophils per microliter of blood. The cell count indicating neutropenia in children varies with age.

The lower your neutrophil count, the more vulnerable you are to infectious diseases. If you have severe neutropenia — fewer than about 500 cells per microliter of blood — bacteria normally present in your mouth and digestive tract can cause infections. (Source: http://www.mayoclinic.org/symptoms/neutropenia/basics/definition/SYM-20050854)

Back story:  Peter and Wil had been sick the prior week with a nasty cough.  Peter got it first, then Wil and just about a third of Wil’s elementary school class and as far as we understand half the local High School.  Symptoms started with an itchy throat, cough and  a fever.  I had a slight itchy throat but nothing major and I figured I just had allergies — trees are starting to bloom here and I have nasty tree allergies.  By Friday, I figured if it was going to hit me, it would have hit me by then, so it must be allergies.

On Saturday morning we packed our bags and headed down to Savannah, GA about three and a half hours from our house.  We got there in the afternoon and took a walk along the river. It was chilly and breezy so though I felt cold, and was starting to feel unwell I thought it had to do with the cold wind.  We had a nice dinner and headed back to the hotel.  In the middle of the night I started feeling really achy, flu achy.

On Sunday morning, Peter and Wil went for breakfast and I stayed in the room to rest before we made our way down to Florida.  I got up and still felt the chill, so I took my temperature.  I watched the digital thermometer climb with dread.  Anything from 100.4 and above for me was a trip to the hospital.  It stopped at 100.7.  Crap.  I got dressed and went to the breakfast area at the hotel to break the news to Peter.

We headed off to the ER at a hospital in a city we’ve never been to before. They quickly took me to the back to a private room instead of waiting in the ER waiting area that had people hacking up a storm, sneezing and coughing.

Wil was getting antsy and I knew this was going to be a long haul, so Peter and Wil went to the local train museum while I stayed in the ER for them to run tests.   It all depended on my white blood cell count (WBC).  The ER nurse was a former Pediatric Oncology nurse and knew what was happening.  She explained to me that your WBC is not the lowest right after chemo but actually right around day 10 after chemo.  Doing the math, this is point we were at.  Ugh.  Right when you start feeling “normal” after chemo is when your body is the most susceptible to getting sick.  What a crappy situation.  (I’m trying to keep my language “clean” crap is usually not the first word that comes to mind).  Now my body was trying to fight off a virus just as the WBC was at it’s lowest.  The white blood cells in my body couldn’t handle the incoming invasion.  I later told Peter that they were like Scotty, “I’ve given her all she’s got Captain!”

To add to the situation, they had issues access my port to draw blood.  A port is a semi permanent IV under the skin used in place of having to do an external IV.  I mentioned before I had an issue with my first one in that it leaked and that they couldn’t draw blood from it.  This one had issues as well.  Which meant that they had to prod and poke my left arm to find a vein.  My good arm is my right arm, but because of the lymph node removal it can never be used again to draw blood or take blood pressure. As usual it took two nurses, three or four pokes and about 45 minutes to find a good vein and draw some blood.

The whole time I kept thinking, please don’t let the trip be ruined for Wil :(  Finally the doctor came in. I mentioned to him what the plan was — we were on our way to Florida.  His face said it all. Not going to happen.  But, he said it depended on what the blood tests came back with and what my WBC count was.  So we waited.  The doctor came back almost two hours later.  I was borderline “Neutropenic”.  My WBC was at 1.3 (1,300).  By definition anything 1.7 and below is considered dangerous.  Damn it body why can’t you just cooperate with our vacation plans?!?!?!  They wanted to keep me in.  I wanted to leave.  If I left it was against doctor’s orders.  I told them I needed to think about it.  I started to cry.

We had planned this vacation last year  before we knew that I had a tumor and had to go through chemo.  This was even back before we even knew that I had to have surgery.  We planned the surgery date around it so that I’d far along enough in the healing process.  When chemo became part of the picture, we planned my treatment so that I’d be in my “off” week for the trip and would feel well enough to go.  But this cold wasn’t something I could plan around.  In my head we just needed to get to Florida.

They sent the nurse in to talk to me.  She explained that the reality was that in the condition I was in I could die.  I had no immunity to fight anything that came.  At that point, my fever was at 102.5.  I was in no condition to continue on to Florida.  Based on what they said, there was no reason for Peter and Wil to stay.  I was going to be admitted into an isolated area of the hospital with no visitors.  I asked Peter to go on with Wil, if anything they could come and get me later — I thought I’d only be a day or so– and if worse came to worse, they’d come get me on their way home, which ended up being the case.

And so, my Savannah / Legoland vacation became my Savannah / Hospital vacation.  I’m glad that Peter and William went on to Legoland.  I would have been heartbroken if they missed the trip.  Wil says he wants to go again, and we’ll plan for it again when I’m no longer going through chemo.

On the plus side, we figured out the trick to get my port to work — the nurses at that hospital are used to dealing with tricky ports — info I can pass on to the nurses at my Infusion center. My next infusion was supposed to be today, but because of all of this it was postponed a week.  I need the break.

I’ve learned that I need to lay low and chill, and I need to accept that I may not be super woman.  That’ll take some time ;)  Now for a few days of needed rest.  Three days in a hospital being poked and prodded in a not so comfortable bed wears on you!

 

Today was THE day

We had Wil’s birthday party yesterday.  I was surprised that I was able to have the level of energy that I did.  Saturday was a dragging out kind of day. I could barely get myself out of bed.  Then on Sunday morning I woke up achy, tired and with a blasted sinus headache.  I wondered how I’d make it through the day.  The Neulasta shot that they give me the day after chemo to make me produce more white blood cells also causes me to be achy and fell like I have the flu.  The only thing that seems to help of all things is Claritin.  So Peter went out and got cupcakes for the party and Claritin for me.  After taking it and drinking some coffee I felt so much better.

Speaking of coffee, I’m at the point now where things are starting to taste different.  Coffee doesn’t taste the same as it used to. Boo!  :(

One thing that I’m glad about is that my hair made it through yesterday for the party.  They said anywhere from 14 – 17 days after the first infusion it would start to fall out, and like clockwork on day 16/17 — today — my hair started coming out in clumps.  I’d run my hand through it and had a fistful in my hand.  Oh well.  Time for the clippers.  I asked Peter when he came home to cut it off.  At first he was a little apprehensive.  “It can’t be falling off that bad!”  Then I ran a hand through my hair in front of him.  “Oh!”

We had some fun with it.  I kind of look like Beaker here:

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The final result:

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I never realized how cold a head can get without hair!  Wil’s still trying to get used to it.  I let him touch the fuzz before bedtime.  I have a wig and some hats so all is good.

Never thought I’d be joining “the club”.  Anyway, it’s done and over with.  Let’s see how long my eyebrows and lashes last.

Finally, I want to say how grateful we are for all the generosity of everyone around us.  We’ve had so much outpouring of support and kindness both open and anonymous.  I’m looking ahead to better days when we can pay this kindness forward.

Thanks everyone!

Second treatment and an attitude of gratitude

Today will be my second treatment.  I’m keeping this short since there’s really not much to update on.

I have been thinking about the huge outpouring of support from everyone,  neighbors, friends, even the parents and teachers from Wil’s class.  You hear about it but when it’s you on the receiving end it can be surprising and a little overwhelming!

I’ve mentioned before how hard it is for me to let go and accept help. It’s like it’s ingrained in my core fiber and DNA so it’s been hard to open up and let that go. I’ll leave you guys with a story of me 15 years ago…

I went to the store to buy a window air conditioning unit. I lived in The Bronx in an apartment on the 4th floor so I made sure I had my hand truck with me to get that bad boy home.

I drove over to PC Richard and picked out my unit. After I paid for it they brought it out and I put it on my hand truck. I head over to my car open the back door to put it in the back seat but there are two problems: the door doesn’t open wide enough to put the box in (this was in my pre-Jeep days) and I couldn’t grip the box and lift it since it was so heavy. Actually if I angled it righy, I could get it in the back seat but there was no way I could lift it.

I huffed, I puffed and was drenched in sweat. Remember,  there’s a reason I was buying the AC. It was summer in the Bronx and hot. I didn’t think to ask for help, and this is NYC, you just don’t do that. Finally, two guys came by and offered help. At first I said no, they kept insisting. I still said no. Then one of them said (I’m paraphrasing), “look lady, there’s no way in hell you’re doing this on your own, so why don’t you just take the help.”

That was the first time that it dawned on me that there are times that we can’t do things on our own and that we just need to shut up and take the help.

Thanks everyone for being so patient with this stubborn lady!

OK- so it wasn’t as short as I thought it would be!