Friday, December 18, 2009

I had my first chemo!


And I swear there's a large part of me that thinks it may be my last.

It sucked. Really, really, really bad. Like I'd rather die of cancer bad. That is until I look at my kids. I've often used the expression that I would "cut off my right arm for my children". Trust me, doing chemo is the real life equivalent. But I don't know if I'm up for this. Even for them.

During the infusion their was a problem (but of course, nothing is simple) and I had to go across to the hospital to have a "port study" -- they thought perhaps my port was leaking. This would be very bad because the drug they were giving me can do alot of damage if it escapes the veins. But the port study showed no leaks so back to the infusion center I went.

I was told that typically nausea doesn't start for about 48-72 hours so we'd planned for Michael to go back to work and that way he would be home during the potentially worst part of it.

What's that they say about all the best laid plans?

When I got home I felt tired but otherwise fine...almost sent my mother home, but SOOOO glad I didn't. The vomiting began about 2 hours after I got home and continued, every ten minutes, for the next eight hours straight. We called the doctor for more anti-nausea meds...they were prescribed & given -- nothing. It finally got to a point where I was told that I would just have to ride it out and come back in the morning for IV fluids. Michael came home early and slept on the floor next to the sofa where I spent most of the night. My mother stayed in with the kids.

Today I have progressed slowly from all out retching to nauseous to queasy. I'm just so damned relieved to not be throwing up anymore I can't even begin to tell you. I went back to the infusion center and also got another injection, this one is to keep my white blood cell count up because I am doing dose dense chemo.

The bottom line is, across the board the general statistics are chemo only helps about 30% of people with breast cancer, even with all the individualized analysis of tumors, hormone receptor status and other various still comes down to only helping about 30%. It also can cause irreversible damage in various ways, from congestive heart failure, neuropathy, even minimal brain damage.

I'm gambling with my life either way.

While I sat, sofa-bound, puking in a bowl and not caring whether I lived or died, I swore to everyone around me I would NEVER do this again. That's it, I'm done. I'm already a vegan health nut I'll just kick it up a few more notches, maybe even fly to Mexico and go to one of those alternative cancer treatment centers/spas...meanwhile let them rip out my ovaries and I'll start popping those estrogen blockers asap. The doctors at the NJ Cancer Institute as well as several others all said that in the end the most important thing I can do to keep the cancer at bay is to cut off it's estrogen supply...I'm lucky to be so highly hormone positive. Luck being relative.

Today, as I sit finally able to type without getting nauseous and I look at the pitifully concerned expression my husband wears on his face each time I catch him watching my kids interrupt their all important playing to come over and give Mama a hug...right now I think that I will try another round...see if there is ANYTHING they can do to tweak my meds. Because I guess even with how awful this was (and I can't do it justice without being totally gross, trust me)...despite it all I'm too afraid NOT to do chemo.

Fear sits on both sides of me right now. It's not a good place to be.

Wednesday, December 16, 2009

I just don't know

I don’t know when I will be starting chemo. I see the doctor tomorrow.

I don’t know who to trust anymore when it comes to all these freak medical issues. I am tired of this, tired, tired, tired. I don’t know why it seems my body is falling apart piece by piece, right along with my life.

I don’t know what to write, what to blog about. I just don’t know what else to say. But I had to say something.

So this is all I have.

I'm still here.

Friday, December 4, 2009

Heart problem postponed chemo

This is freaking unbelievable...I mean, really, if there's a Murphy's Law just for breast cancer patients then clearly it is working overtime on me.

Went to have the port installed yesterday morning -- surgically all went well. Felt fine afterwards, no nausea, no real pain. The surgical center is about 1/2 hour away from hosptical where oncologist is. We got to the oncology office and ran into the chemo nurse, Eileen, in the hall. I like her very much, she is funny, smart and sweet. We stood there joking around for a few moments and then I went into the waiting room to hang out until they were ready for me. I was in good spirits. But suddenly my heart started racing. At first I thought maybe it was nerves coming on, tho I truly didn't feel anxious emotionally at all. But within a minute or two I realized this was not anxiety, something was very wrong. I told Michael to get someone and then all hell broke loose.

The nurses and doctors all looked worried (never a good sign) and they called the EMT's. Mind you, the hospital is across the parking lot and these people are medical professionals. To make a VERY, VERY long story short my heart rate reached 215 (normal is 60-100). I thought it would pound right through my ribs and out my chest like that scene in Alien. But emotionally I was know, other than being worried about what was happening. It was very strange. Eventually they were able to bring it down with some magical injection to just above 100 where it has stayed (hopefully) since then. I spent the rest of the day in the ER having tons of tests. I am now at home waiting for a cardiology consult and more tests. No chemo until they figure out what this is.

Chemo delayed AGAIN.

My feeling right now is that somehow this port has done is placed in a vein in my chest, clearly this is what caused the onset of the symptoms. But no one knows anything. They are all scratching their heads.

I have a previous condition, Mitral Valve Prolapse -- but have had no symptoms in about 8 years. I used to smoke 2 packs a day and weight 300 lbs, no big surprise I had heart flutters back then. But this was more than flutters. I think this port placement aggravated something, triggered some sort of reaction. But no one seems sure if this is what it is.

Either way, I'm not anxious, not scared, I'm just getting totally fed up. The greatest risk of cancer recurrence is in the first five years. Getting treatment clearly reduces that risk. I NEED TREATMENT!!! It has been over 8 months since I found the stupid lumps.

Yet here I sit, waiting. Again.

Wednesday, December 2, 2009

Wigging out

Tomorrow morning I go into surgery to have a port installed, and then off to have my very first chemotherapy infusion.

A port is a quarter sized disc that is surgically implanted just under the skin. A thin catheter tube connects it directly to a vein so meds can be given thru a needle inserted into the port rather than an IV in the arm. It is an outpatient surgery and supposed to be simple and safe. I'm frankly not thrilled about having it done the same day as chemo, but that's just how it worked out. I'm also not crazy about having yet another scar on my body thanks to cancer. Although compared to what my mastectomy left me with, this is nothing.

Switching gears...

On the house front, the first house I posted about is no longer an option. We actually made an offer but had immediate regrets and major doubts due to the road situation as I blogged about. However before we could withdraw the bid the owners accepted one from another couple anyway. It was not meant to be and I'm relieved. The second house, however, is still a possibility but let me tell you, it needs ALOT of work on the interior. We are considering it but would have to make a low offer so it might not work out.

Either way, all this house stuff has actually been very positive for me right now, despite the frenzy and confusion it has produced. For one thing it has given me lots of other stuff to focus on instead of chemo. Since we also put our house on the market we did a major cleaning from top to bottom and now I have a nice organized home to recuperate in to boot.

Today as my last preparatory act before chemo I went and got my wig. I chose the same shop my mother used in a posh upper-middle class town near where I grew up about an hour from here. I expected the shop to be nothing short of aristocratic and was quite surprised when it was completely the opposite. You went into the back door of a nondescript building and thru a dark hallway reminisent of what I would imagine a 1920's Speakeasy to be like. I half expected to have to give a secret password to be allowed in! It just never occured to me that many women would wish to keep this secret, that it was somehow shameful or embarrassing to wear a wig. The woman who ran the place told me that if I wanted to be discreet I didn't even have to use the full name of her shop on my check because it contained the word wig. It all made me feel sort of dark and gloomy.

The wig I chose is a close match color-wise, but the cut is completely different than I ever wear my real hair. This was per the owner's advice, the idea being it is less traumatic to use a wig of a different style because you won't compare it to your own natural hair. Makes sense, I guess. I'm not sure I like it, but then again it's hard for me to be objective right now.

I am dreading tomorrow. I keep trying not to freak...reminding myself that the chemo nurse assured me I would probably feel just fine tomorrow, nothing will happen right away. But the idea that I am pumping poison into my veins, chemicals strong enough to make my hair fall out...well, it's just damn scary. I mean, you want it strong, you want it to kill stray cancer cells for goodness sake. But I feel like this has already been such a long road, I'm weary and tired of this and want to move on, want it to be over. Yet I am realizing now it is just the beginning. Very soon, when my hair falls out, I will finally look like a cancer patient. It's real. I have cancer. Someday I will be a cancer survivor (if the fates allow) and will carry scars and battle stories with me into the future.

Not to sound Pollyanna, but hopefully sharing my experiences will in some small infinitesimal way help someone else who is facing a tough road, whatever it may be. Throughout my saga I've met so many women that have walked this path and each has generously shared their tales with me, to comfort, to inform, to help show the way. I thank them, and all of you, dear readers...all of you who are traveling right along with me. I can't imagine going this next leg alone.