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.

The Latest in Numbers and Living Well

Got my latest liver enzyme readings, checking in on the all important Alkaline Phosphate S, AST (SGOT), and ALT (SGPT).

Here are this week's numbers, after chemo number 4. Yesterday was chemo number 6, which means I'm halfway through:

Alkaline Phosphatase, S    124 (started at 286 pre-chemo, high normal 150, 57% drop from start)
AST (SGOT)                    32(started at 150, high normal is 40, 78% drop from start)
ALT (SGPT)                     45 (started at 124, high normal is 40, 63% drop from start)

The drops in numbers are lower at this point, but since we're normal for two of the numbers and just about to hit normal for the third, that's ok. I don't want to head to the bottom of the scale and have the opposite problem.

Tonight I'll be joining my friends at Mi Vecinidad, a Cuban/El Salvadoran joint down the street, to toast Beatrice the liver, and her improving health.  Finally, I'll be meeting the fabulous Nico, the National Cancer Institute Oncologist who blessedly looked over my reports and offered me constant straight, encouraging talk.  How do I handle a situation like that? Give him a lap dance? That'd be kind of creepy coming from a balding cancer patient, plus, he is gay.  Maybe I'll just pay for his dinner. That might be more socially acceptable.

I continue to experience pure gratitude for all the help I'm receiving from friends and family. I could not do this without them.  I also continue to experience challenges in finding others who are also dealing with metastatic cancer and living well with it.  Some folks are doing just that, and some seem to have dropped into a life of settling for the constant threat of recurrence and death.  This disease might take me early. Who knows. But I want to live my life and live it well, loving the people around me, helping others, just taking it a day at a joyful time.  At this point I do not need to go onto disability and I don't need to think of end of life planning (I've had the will set up for a long time now anyway).  Right now I am focused on healing, surgery, maintenance and moving forward.  Who knows what will happen next, but I can't control that, so why dwell on it.

I've got t-shirts to create (I have more in mind-http://uppitycancerpatient.spreadshirt.com).  I have organizations to volunteer for, mentoring other women going through this crap.  I have movies to see, books to read. coffee to drink with friends, walks across the Mall, jokes to crack, counted cross stitch to create, dogs to pet and play with, vacations to take, and so, so much more.

So the news continues to be good and I am happy. I did have one hell of a cold for two weeks and discovered that colds on chemo suck. Suck real bad.  But still, I'm alive, I'm loved and cared for, and now I have some fun t-shirts to wear. The Uppity Cancer Patient t-shirt was quite a hit at chemo yesterday. Wait until they see the Embrace Your Inner Cockroach, Kick cancer to the curb shirt.

Boobs or No Boobs

Well, that's not really the question. It's more bilateral mastectomy or lumpectomy.  I met with my oncologist today and, while my news is most excellent with my liver enzyme readings way down, my oncologist takes the worst-case scenario approach with the goal of being pleasantly surprised. That was not exactly the approach I was hoping for, but I can see her point of view.

The topic of what happens next came up.  My question was, after the chemo, how long do I have to wait for surgery.  I expressed my focus on having both breasts removed. Dr. Kaltman questioned why I wanted such a radical procedure, telling me that her focus is to keep the cancer at bay elsewhere and that the likelihood of another primary cancer appearing in the breast was very low.  I took a few seconds to think about this but my reply was fast and adamant.

"Even if it's rare, if that happened, it would piss me off."  That seemed to catch Dr. Kaltman's attention.

I understand that we need to get the cancer backed down, but frankly, I do not want to go through all of this only to have another cancer 20 years from now.  While in the waiting room for this appointment, in fact, I met a 74 year old woman who had fought breast cancer 19 years ago and was now back with a recurrence.  I've met too many women like this.  The cancer I have is aggressive and fast growing. While, yes, it's in my liver and I know that this complicates things, I do want to remove as much of the breast cancer's growing media as I can.

So bilateral mastectomy it is. It's tough surgery, but my life is worth it.  I feel like saying that with pointed pauses.

My . . . life . . . .is . . . . worth . . . .it.

Recovery from surgery? Such is life.  Chemo and the exhaustion and side effects that come with it.  I get to live.  Even radiation.  That's the way it goes.

My . . . life . . . .is . . . . worth . . . .it.

The question came from my hope that I would be done with chemo and surgery by October so I can book the "This Shit is Over" cruise to Bermuda.  Okay. I know. I'll have to wait until the scan 2 months from now to see where we are, but the news so far is good.  Liver enzyme readings way down, doctor's exam of tumor in my breast positive since it's smaller now.  All good news.

So in the end, I'm the one with cancer. So while my doctor has her concerns, I get to decide to lop 'em off or not.  And for me, lopping 'em off, replacing them with reconstructed versions, is the best option.  It's an odd goal, maybe, but it works for me.   Do we have to go over the my life is worth it thing again?

The Numbers Are. . . .

Finally, I got my latest liver enzyme readings.  Again, we're looking at Alkaline Phosphate S, AST (SGOT), and ALT (SGPT).

Here's this week's numbers, after chemo number 3 which was 2 weeks ago. Today was chemo number 5:

Alkaline Phosphatase, S    130 (started at 286 pre-chemo, high normal 150, 55% drop from start)
AST (SGOT)                    35(started at 150, high normal is 40, 76% drop from start)
ALT (SGPT)                     51 (started at 124, high normal is 40, 59% drop from start)

So Beatrice the liver is doing just fine. My friend Emmy wrote a letter to Beatrice recently, telling her she was very lucky having me take care of her.  And then I began to use that idea, rubbing Beatrice, telling her to heal and that she'll be okay.

I've also hired my ex Frank, a mighty tough Jersey boy, to act as my cancer bouncer.  A  version of him is inside me, firmly pushing the cancer out of my body, saying things like, "Get the fuck out of here, or I'll cut you," his hand in his pocket ready to pull a gun or a knife.  Frank is a tough, loving man and I like that about him.

The Taxol, Frank, and my loving on Beatrice are making a difference. My goal? To show no cancer in the scan after chemo and then move forward with the bilateral mastectomy, followed by maintenance on Herceptin.

I'm in the process of planning a Bermuda cruise out of Baltimore in late October with my friend Jill.  All are welcome to join. An ocean-side room is only $699 for a 6-day cruise. 

And I'm going to enjoy the help I'm receiving. My friends Emmy and Thaura are making me dinner right now. I love Friday night dinners for the wonderful company and because I am being served.  Life is good and I am grateful. Now back to planning that cruise.

It Matters

Today is chemo day and I am anxious. The main reason? Last week I didn't get any liver readings.  The reason for that? The doctor had decided to only take the readings once every other week.  She had no idea how important those numbers are to me, and I found not having them to make a big difference.  This was a rough week, filled with emotion and exhaustion, a cold causing even more exhaustion, and then finally losing my voice, a nightmare for someone who cannot shut up.

Add to this a horrible interaction with an angry person who decided to make her point by telling me that, "I thought people who were terminally ill were nicer."  That came out of nowhere since the comment I made to her was simply a joke, and such an extreme reaction from her was way out of line, even if she was pissed about my joke. After spending the afternoon in my office crying, I emailed her back and told her how that interaction would have been better handled, and that her comment, even made to the biggest SOB in the world, was cruel and mean.  This young lady has some cognitive disability but mostly,she has not been taught limits about what is appropriate or not appropriate to say to others.  Certainly, I will make sure she does not cross that line with me again.  In the end, I was so angry, I was tempted to travel to where she lives and teach her that she could be terminal too by drowning her. I won't. I won't. But it was a comforting thought for me.  She of course made this comment on Tuesday, my worst day of physical and emotional exhaustion after chemo.

What might have helped would have been to have had some good news from my liver numbers.  Instead, not having the numbers made me feel like I was in a boat adrift, not sure where I was going.  I knew the numbers had been getting better, but what if they weren't this last time? I didn't have them to know.  Those numbers get me through each week, because frankly, chemo and having cancer sucks.  So any little thing I can grab onto matters.

I've since contacted my doctor twice, once by phone and once by email, asking her to please order these readings every week.  Today I will ask the nurse if the order has changed.  If it has not, I will ask that the doctor be called.  While I will see numbers taken from last week, thank God, if the test is not done this week, I'll have a week of no numbers again.  I'd rather skip that experience.  Having Stage IV cancer means I'm taken over in terror every once in a while, so the liver numbers are buoys in that sea of "I don't know where this is going."  So forgive me for being pushy, but my life is in the balance here. I don't really care if my doctor is annoyed by my asking. She doesn't have Stage IV cancer. I do.  And we've already established that I am an Uppity Cancer Patient.

And, oh, in the midst of all of this, I started thinking of responses to the situations coming up in my cancer journey.  Sayings like, "Don't Fuck With Me, I Have Cancer," or the label of "Uppity Cancer Patient." My wonderful friend Frank Meyers of VOX801 Design is a talented artist and he graciously agreed to create designs for the sayings.  I found a site that handles orders and fulfillment, and now there is a place where folks can buy these wonderful sayings on a t-shirt. If you know someone who is going through this, pass it on.  The site is http://uppitycancerpatient.spreadshirt.com. And, oh, in honor of the young lady's cruel comment to me this week, I'll be making another shirt that says, "Nope. Not planning on dying. But thanks for asking."