Fuck

I'm a big girl. I can say that word.

I just spoke to my oncologist. The CT scan shows that there are still masses on my liver. They're smaller, but they're still there.  The largest mass has gone down from 3.6 cm to 1.6 cm.  That's a good thing. But what this means is that I need more chemo.  Six more at this point. A month and a half.  A month and a half of more exhaustion, of more time on that goddamn steroid, of living a life limited to my couch and my bed.

I know I should feel grateful that the cancer has responded so well to the chemo. I am grateful for that. But really my first response was to cry. I am tired of living this limited life. What can I do though at this point except go for more chemo. It's that or die.  Okay, I'll stop being so whiny now, or at least whining online.  I think I'll go home and whine instead. Care to join me?

What's In a Scan?

Well, in my case, my life. Or the answer to the question, do I get to live?

Now that I'm coming to the end of my chemo (hopefully), I'm starting back into scans (bone, CT, and breast MRI).  All are meant to answer the long-awaited question of how far has the cancer been kicked back.

The breast ultrasound yesterday showed a significant decrease in size of the breast tumor by perhaps up to two-third. The tumor is still too close to the pectoral wall, so the breast MRI will give us more info about that.  However, my breast surgeon (God love her) remarked that the MRI might even show that some of what looks like tumor on the ultrasound is now scar tissue.  Yeah, scar tissue. Root for that.

The CT and bone scan will tell us if the cancer is in the bone (it wasn't before, so let's keep it that way) and if it's still on the liver.  I'm shooting for nothing on the liver. Why? Because that means chemo is over and I can go straight to bilateral mastectomy and then on to maintenance doses of Herceptin. In other words, I'd get my life back.

And moving on with my life sounds pretty darn good to me right now.  I like my bed and my couch, but they've gotten a bit too familiar. And the only command my dogs seem to follow nowadays is "sleep."  I bet they're getting tired of that too.

Check back for more news. And let's all hope and knock on wood that it's good. I could use some good news about now. And the dogs would like to relearn certain commands like "walk".

Dragging Ass

You can't get more basic than that. That's what I'm doing. Dragging ass.  Chemo has taken everything out of me and my life now consists of sleeping, getting to work 2 days a week, receiving chemo, and then more sleeping.  The good news is that I have only 2 chemo sessions left. The bad news is that I continue to duck and dodge the bad news bearers, people who feel compelled to tell me of those who have died of cancer or will soon die of it. Do I really need to know this? No.  Even if I were to die sometime soon of this disease, I'd rather live in the hope that all will be okay, than in the surety that this son of a . . . . disease will take me down.  Let me have that illusion. We'll all be much happier for it.

I was so depressed by the bad news bearers, that I actually decided, considering how hard it's been for me to find positive stories of cancer survival, that maybe I could help myself and others by creating a small website of survival stories. Don't know if it'll help others, but it's helped me.

http://www.uppitycancerpatient.com

If anyone has more stories of survival, let me know. I'd love to add more stories.

And more in the good news department, my new CA 27.29 tumor marker number is out. It's now 86.5.

The reference range for this tumor marker is 0.0 to 38.6.  My number started at 565.6, meaning there's been an 85% drop in the tumor marker. The hope is that this, like my liver numbers, will drop back into the normal range, I can go on to have surgery, and then simply start maintenance drugs and be around to annoy you all for a long, long time.

Either way, I'm still dragging ass. Can't wait for chemo to be over. And when I say over, I mean, don't bring that sh*t near me, I don't want to wear a wig ever again.  All you bad news bearers, step down.

A Cautionary Tale

Let's get this straight.  I have Stage IV breast cancer.  Now when a doctor says you're Stage IV, it's really a broad definition.  Earlier versions of breast cancer come in gradations.  Stage IIa means a certain size tumor and no cancer in the the lymph nodes. Stage IIb means a certain size tumor but cancer in the lymph nodes.  Once you get to Stage IV it can mean anything from "You have a touch of it in the liver" to "Man, it's everywhere, brain, bones, lungs, liver."   So I am lumped into a big group, and before I became Stage IV myself, I also thought Stage IV meant "Man, it's everywhere, you're dead."  So since the cancer for me is only in the liver, I prefer to call myself Stage IV lite. I've created my own gradation.

Here's the other thing we need to get straight.  I know I'm in for a long haul. I know this m-fing cancer can come roaring back at any moment and take me over. I know there are risks to surgery because of infection and that infection could mean not being able to do chemo when the cancer comes unexpectedly roaring back. I now know that the main drug that will be used to inhibit my HER2+ cancer, Herceptin, has been known to stop working, but luckily there are other drugs ready to go.  I know that there are many people who become debilitated by this disease and have to stop working and focus entirely on nothing but fighting the cancer.  I know all the bad news.  And the bad news I don't know, I don't want to know.

Because here's the deal.  I want to focus on getting better, starting maintenance with Herceptin, and get back to living my life.  I want my hair back and I want to dye it purple or whatever I damn well please. I want to go through a day without crippling exhaustion. I want the luxury of only going to the chemo lounge every 3 weeks for my maintenance Herceptin.  I want to be able to take out my own garbage. I want the feeling back in my feet (that's called neuropathy and it's one of the side effects of chemo). I want to be able to taste food again.

I want to live.

But for some reason I am constantly being told the cautionary tale. My doctor tries to dissuade me from a bilateral mastectomy because what if the cancer roars back and I get an infection from the surgery. She tells me this in spite of the fact that my liver numbers are back to normal, my tumor markers are down by 61% after only 3 chemos, and all indications are that my scan will be clean for the liver (I'll be the hopeful one here).

I am told by several metastatic breast cancer survivors that I can get SSI disability immediately since I have metastatic cancer. I finally get so fed up hearing this that I tell the last person uttering these words to me that I refuse to think of disability at this point because that would be like saying I give up. Note: I have short- and long-term disability through my job and am using intermittent short-term disability to get through the chemotherapy and the surgery, I just don't want to go on to permanent disability. I am only 47 years old, for God's sake, and I don't have a husband to provide medical insurance.

I am told my another metastatic breast cancer survivor who has been living with the disease for years, "You must feel ripped off."

My reply, "No. I don't feel ripped off. If a year from now I'm on my death bed, I'll feel ripped off. But now, no."

Finding life-focused long-term survivors of metastatic breast cancer has been more challenging than I thought it would be.  I understand that this disease is hard to live with, but even the survivors who haven't had the disease spread seem to focus on the disease and it's badness over just living. What is worse is that all of this has been coming at me during my lowest, sickest, most exhausted point in my treatment. The result has been that in my head I've begun to settle. I've started thinking of end of life, started thinking of more chemo, started to assume I'll be one of the normal stats for metastatic breast cancer, dead within 2 to 3 years. I can't afford to think that way.

The other result is that I'm pissed.  I'm pissed that I have this disease and I'm sick and tired of hearing the bad news. For cripes sake, it's like a bucket full of crabs.  If one crab tries to crawl out of the bucket, the other crabs pull the fleeing crab back down.  So I've stopped looking at online groups for advanced breast cancer, I'm limiting my contact with people I know have been cautionary with me before, and I sure as hell need to have a talk with my doctor about exactly who she has as a patient.

I was watching Eddie Izzard last night. He performed a piece about his gran and her life force. Three strokes and she would not go. "I have stuff to to do," gran proclaims. That's actually been the most helpful bit I've heard in weeks, gran and her life force.  It's true. Some people have such a strong life force that they refuse to leave. Certainly, I have enough piss and vinegar that I think I qualify.  Like gran, I have stuff to do. Plus, as I told my Uncle Mike and Aunt Carole last night, plus, I don't want the young lady who insulted me by calling me terminally ill to be dancing on my grave. Because I plan on dancing on hers. 

Wish me luck in finding more focused on life survivors. And pray I have the strength to tell the cautionary tale tellers to shut the hell up.  Chemotherapy and surgery are hard enough to go through without people telling me how bad it's going to be. Plus, we've already gotten it straight that I want to live. Damnit.

I'm Normal

At least in terms of my blood work, I am.  In other areas, not so much.

Here are this week's numbers, after chemo number 7.  For all three liver enzyme levels, I am solidly in the normal range.  Yeah, Beatrice! Yeah Taxol! And yeah Herceptin!

Alkaline Phosphatase, S    108 (started at 286 pre-chemo, high normal 150, 62% drop from start)
AST (SGOT)                    24  (started at 150, high normal is 40, 84% dr op from start)
ALT (SGPT)                     37 (started at 124, high normal is 40, 70% drop from start)

The next big measurement to be taken is the tumor marker level on April 6. Here's to more low numbers all around.

Today's Chemo Trippers are my sister Meg and her husband Bob, who flew in from Wisconsin last night to help for a week.  God bless them and thank you.

The other fact I've been finding is that when I am continuously exhausted, my morale goes way down.  The answer once again has been to get lots and lots of rest (stop feeling guilty about it, Susan, just sleep).   I've also discovered that when I listen in on online support groups for those suffering from metastatic cancer, I become even more dejected. Folks in these groups tend to talk about fearing results of future scans and say things like "The cancer is now in my brain - or spine, or lungs, etc.  As one of my Cancer Support Angels, Nancy, tells me, stop looking at those groups.  I cannot afford to spend my time thinking about if this cancer will recur and where, and instead need to focus on this cancer going away and staying away thanks to maintenance with Herceptin and other drugs.

So I've signed off those online groups and am instead concentrating on "Sticking with the winner4s" as they say in AA, other women with metastatic breast cancer who have been surviving for years without a recurrence. Those stories give me hope and that is who I want to be when I grow up, at least cancer wise.  I'll never grow up in other ways.

There's My Voice

Finally, I can speak.  My Internist's suggestion of using a Neti pot to rinse my sinuses, followed by Verimyst nasal spray is making a difference. That and the meds for GERD (go ahead, laugh, it does sound funny), which can also affect the voice, seem to be helping my voice make a comeback.  What a relief.

I did get the okay to have chemo today.  I dutifully showed up at 8:15 am (okay, I was 15 minutes late) for the xray and then dutifully ran back to the Katzen Cancer Center at Medical Faculty Associate building to find out what I needed to do next. Such a good patient. Such a, I can't control this, so I'll do what I need to do to get this sucker done patient.  The front desk told me to come back at 12:30 since Dr. Kaltman will have seen the xray at that point and have a decision.  Dutifully again, I showed up at 12:00 (early this time), and when the front desk placed the hospital bracelet on my wrist, allowing me back into the the chemo lounge, I said, "I'm good to go for chemo?"  When the answer was yes, I began jumping up and down and crying, "I get to have chemo! I get to have chemo!" The folks around began to laugh and one staff member remarked that everyone should be like me about chemo.  Why not? It's saving my life.

And here's more good news.  My liver enzyme numbers continue to hold, dropping 1 point each for AST (SGOT) and ALT (SGPT), which is fine since if they kept dropping dramatically as they had been, they might go to zero and I might be dead the other way. 

But a new number has appeared, tumor markers.  My doctor took a baseline breast cancer CA 27.29 tumor marker before I started chemo.  That number was 565.6, not the highest in the world but still pretty high.  The doctor tested the number again on 3/2/2012, after the third chemo.  The result was 218.4, a 61% drop after only three treatments. 

So woohoo, gang. Woohoo. Another dramatic moment in Soozi body numbers and another number to feel proud of.  I may have bombed by GREs (I did, really) but I seem to rock in the Taxol/Herceptin killing the cancer numbers. If I had to choose which test to do better at, I'm rooting for the one that means I get to live. Wouldn't you?

This Officially Sucks

As if chemo was ever a good thing.  But for the last two and a half weeks I've been laid out flat and have lost my voice.  That exhaustion coupled with my inability to talk has left me feeling dejected and isolated, not a good combo.

I just spoke with my Oncologist and the situation has gotten even more interesting.  She's suggesting that I take a week off chemo. What?! A week off chemo?!  A chance for this garbage to get back in there and growing again? No way.

But like a stern mother she explained that she doesn't want me ending up in the hospital. So now I have to go down to George Washington University Hospital at 8:00 am Friday morning, the day of my chemo, and get a chest xray and have a nurse listen to my lungs to assess whether I'm up for it.  I'll damn well be up to it, you can bet your ass.

But the challenge is the extra steps in the process of getting up early, running around to grab the xray order, sitting in the waiting room of radiology, laying on an xray table, running back around to have my lungs listened to, calling my doctor, and then getting the okay to go ahead. 

I called this crap in to the Oncologist's office on Tuesday. The lovely nurse practitioner suggested I drive out to suburban Maryland where their other office is located to see the doctor.  I refused, saying I was too exhausted to make that trip (it really is a haul and frankly I couldn't get off the couch I was so exhausted).  I was hoping they'd find someone at the George Washington University Hospital location to help with this. Thursday is when I first heard back from the doctor and she suggests the xray and a nurse chest listen. So once again, I'm operating last minute.  If she'd called on Wednesday, I could have done this malarkey today (Thursday) and been good to go for Friday's chemo.

Lesson learned. If the doctor doesn't call back on Wednesday, call her.  I'm tired, dejected, and now I'm angry.  But as a good friend said to me recently, "Susan, when you stop being angry, that's when I'll worry about you."  I'm really angry.  They have mobile veterinary units nowadays. You'd think they could have mobile medical units or at least a way for my doctor to work with her other location to help an exhausted patient.  This is the kind of stuff that drives me batty.  Tell them I'm a dog and send over a mobile veterinary unit. I'm sure I can lay on that exam table just as easily as I can one made for humans.  At least that would save these exhausted legs the trip.

And, oh, if anyone asks? I'm a badly-bred wire fox terrier who will bite your face off if you stick your hand in my food dish or try to take away my blanket.  Just saying.