Tuesday, November 29, 2016

Dysfunction Junction

I probably shouldn’t write this post in the mood that I am in. But I also know it helps to see what I’m really going through, no sugarcoating it. It’s been perhaps the worst Thanksgiving holiday, and my situation has much to do with it.

First, I’ll update you.  I have changed from Taxol to Navelbine along with the Herceptin and Perjeta. It seems to be working well. The side effects might be a little worse than the last round, in some (mostly GI) ways, and better in others. But boy, there is no arguing that there are good results.  That march across my chest has become more of a tiptoe. No tulips yet, though.

I wasn’t sure, however. I had developed quite a raised area under those metastatic skin bumps, and I feared I was reversing progress, so I made an appointment with the surgeon. Sure enough, the night before I saw her, things magically improved. Nonetheless, the appointment was good news: in addition to improvements in my outcomes so far, there is a plan to do surgery, eventually. All of this area will go away. I’m happy to say goodbye to it all, but it will be a harder/longer recovery than even the mastectomies. They will need to rebuild that area from somewhere, probably my back. I’m ready. It does mean that I will need to think about my future.

The long recovery, coupled with some odd requirements in my employment benefits, and it is starting to look like it is time to craft my future for me and my family.   I will end up retiring in very humble circumstances, to be honest. I should be sooo much better, and I would have been, if I didn’t have $60,000 in medical costs or if Bank of America had refinanced my house after the crash. I will try to optimize my outcomes, and I fear mightily what the new Congress with do to destroy what I have, but the world is starting to really back me into a corner. I shall go gracefully; I’m looking forward to seeing my hubby full time, hitting the road in the RV as we can, and not having to worry about the next study or the next big project.

That said, my circle of support has grown sadly smaller, in a very cruel way.

I have a nephew; a young man of strong character who treats my only, grown child like his sister (they are just 10 days apart in age.) They’ve been close from babyhood. Unfortunately, he doesn’t get along with his father. Dad would like the son to cut him a break, and began to be kind of obvious about it by cultivating another father/son relationship with an unrelated young man openly on Facebook; and the son has not heard from his father what he longs to hear.

Things devolved this year, and when son got married, it appears he did not send an invite to his dad. We didn’t know that, and when hubby called to encourage/scold father for not coming, it didn’t go well.

I get a little bit of this father/son dynamic: my own mother introduced a serial abuser into the family after our dad passed away. The man was horrible to us, and it took mom six years to untangle herself and us from the abuse.  Although my mother died decades later knowing we loved her and forgave her, with my sister and I sitting right by her side -- there was always a thing. Abuse is a hard thing to get past and we did, but we may have been sharper with her and more autonomous than we might have otherwise. We were both upset that mom could have traded our security in the world for our winter coats (essentially her only choice back then.)

And my sister was even angrier than I was, while mom was with us. I’m not even sure she saw what I did: We were impatient with her, irritated by her personality shortcomings...there were a host of moments that we might have played out somewhat better. In some ways, my friend, whom my mother lovingly “adopted” after her family kicked her out, had a gentler relationship. But we never cut mom off and we never really even told her that we were upset. We just moved on, and took care of mom from that time on. She knew we loved her. Hubbies loved her. We all did ok. And we miss her.

I see some of the same dynamic between son and father. Son was also abused from someone else, and dad did not rescue him. (In fairness, I don’t think dad knows.) And dad is upset that he hasn't been forgiven for some more direct missteps he made with his son. I gather he thinks -- or at least he tells people -- that his ex has poisoned the waters against him. But when I talk to son, I only hear the things father did when they lived together, and they aren't pretty.  Mom wasn't around for those. Mom and we don't speak often, but her concern is for what's happening now. She doesn't trash talk her ex, but she did call to wonder why dad wasn't coming, in tears.

Yes, it was my hope that father and son would talk this through, not explode away from each other, so hubby and I tried to be a conduit; a channel of peace.  It turned out more like being the third rail.
It takes a great deal of work to get past all that happened, and it was only in process. And thinking back, my mom sucked it up quite a bit, and took blame upon herself; that’s a dynamic I don’t see here. Fortunately, she knew we had a foundation that could never include shunning. We'd never turn our backs on her.

Not so with father, son, nor the extended family. No one is getting past this or trying to let it go to get along. That's on both sides, now. And because we attended son’s wedding when father appeared to be cut off, hubby and I are now shunned -- except for a third cousin who called me an asshole on Facebook.

Now. This happens now.

At the darkest time of our lives, when we both have so very much to face, when our very lives are on the line, part of our support system vanishes. All that we did was try to keep them together...yet, neither father, nor all the cousins, will have anything to do with us.

The cousins were content to never say a word. Father let me know that I’m an unwelcome busybody who has made thousands of missteps for 45 years, each one remembered and cultivated, so that he could release his nightshade at me in a ruthless email. (In fairness, again, I asked him to, for understanding.)

I learned that father has a huge misunderstanding of facts in the situation, but he has a carefully mulched crop of resentment and anger. And they've been discussing our missteps for decades, apparently.  He tried to suggest that mom and dad were in on it -- if they were/are, they aren't taking a position. There's enough ridiculous drama.

Instead of asking what he can do to heal this rift, he’s very willing to ascribe evil to us, assume the worst, despite our relative innocence. He's the victim, not his son. We're the enemy. So he’s spread the crop of belladonna, and now we are poison to everyone else.

The cousins and third cousins simply will not speak with us. This, despite a promise that we would “always be family.”  We are now persona non grata. (The asshole third cousin doesn’t mind trying to curry favor from our game master daughter, however. What a fine character.)

In some ways, I was relieved. I’ve put a brave face on my own issues with them all for many years. They let their children bully our disabled daughter as a child – in fact, that same son is the only one who stood up for her.  The cousins have always excluded Brian for some reason from events we might have enjoyed. So, while this was disappointing to me, I was more worried for hubby. We’ve worked it through, and we are fine with their choices, and I’ll explain why.

I’m comfortable with every ethical choice we made. We’ve done nothing but try to make things better, especially me. (One can argue that the words between brothers were a bit sharp – but “unconditional love” should get past that. That’s how we know that those words are hollow. The so-called love comes only with the condition that we accept his conditions, even if it means punishing son. And none of them know why!) But the son can not heal with that misconstruction of victimhood father has put in place. He needs his father to say "I'm sorry," pretty much like mom, but son despairs of ever hearing it. Or hearing it fully. Father sinned against him by what was done, and what was left undone. (Yes, you should recognize the confessional prayer.)

So, here we are. The cousins blindly accept that father's complaint is both factual and honest. Therefore, we must be evil. They profess forgiveness on Sunday, but nurse a misdirected grudge with abandon.  These are the results, and we’re good.

I need to cleanse my life of the toxins. Folks of character don't really have conditions. They don't misascribe evil and eschew forgiveness. And folks who are not in bed with the devil don't create enemies from beloved relatives. So what are we to conclude about them?  Sorry moms, we tried.

After this happened, I posted on Facebook that this would never happen between me and my sister. Murder could transpire, and we wouldn’t let that come between us, because of our childhood.  Well, mostly.

 After a lovely thanksgiving with that son and our daughter, we came up to see my sister. We had another Thanksgiving meal with their family. Now we were careful not to talk politics with a radical libertarian, but I was explaining why ballot selfies were illegal in Michigan from my many years as an election official,  and was explaining how it was bad philosophically for free and fair elections and open government (it needs to be illegal to avoid undue influence from any number of bad actors).

Suddenly, my sister’s son-in-law stands up and screams: “You’re supporting the government! You’re the problem! I can’t be in the same room with you.” And he stomps out.

I was stunned.

My sister turns to me and explains how libertarians like this feel that the individual rights trump the need of the system to be free and fair.
SomeeCards -- A pilgrim holds a turkey. Thanksgiving: bringing out the best of family dysfunction since 1863.
My Thanksgiving This Year

Now, before you vilify her, remember, she has a host of grandchildren. She wants to see them again. She loves them, and her daughter. Libertarian will make that impossible, if he chooses. But...

Enough toxins. I’m sorry, mom. I know you want me to be closer.

Now let me explain one more thing that happens when you are battling stage IV fight-of-your-life cancer with these difficult, depleting family dramas thrown in. Remember when I told you about that moment when treatment had so debilitated me that I pondered whether this was what being near death was like? When those moments happen again, then events like these -- and the feelings that they cause -- seem outsized. They take on a greater darkness; they make a deeper wound. I found myself wondering if it wouldn’t be better to just let nature take its course. Again, I ideated that my family would have my insurance, and that would solve so very much, make tough disabled lives easier.  This is all just so very hard...

Yes, yes, I know. I feel differently now. I talked to hubby as soon as the feelings crept over me. I wept and cried and talked until I exhausted myself. My eyes stung from chemo tears (they hurt!) I’ll see my doctor and my therapist tomorrow. I’m just telling you so you would know how intense it gets. I'm telling you how much of this cancer game is played in your head!

My message is this:  Friend, don’t dump on a metastatic breast cancer survivor. She’s in the battle of her life no matter how with-it she seems, and dumping your petty, ill-informed, childish sh*t on her makes you a horrible human. You push a vulnerable, suffering relative, to whom you professed familial affection, toward darkness. What sort of a person does that?

Friend, I would never have done remotely that in return, and nothing I did do rises to such a level – or even comes close (at least, until I publish this.) Why would you think this was acceptable? I’m sorry, there’s just no other conclusion. You’re dragging people I love down with you. Apologize or go to hell. Either way.

And now, you know why I’m on a toxin cleanse for the holidays.

I am curious to know if you feel like the claws came out after your diagnosis. Feel free to leave your thoughts. 

Tuesday, November 1, 2016


Colorful trees at peak in Marquette Michigan
Peak fall color in Marquette, Michigan. A little blessing in the madness.
Today marked a turning point. I have to have someone else look at my situation. I will go for a second opinion at the university hospital near me. I have to: someone, or lots of someones, at my current location are trying to kill me!

Actually, the physician care has been great. I do still love my oncologist. But the rest of the staff seems to be out to neglect me to death.

Let me explain:

I had my first chemo, as I told you: Taxol, Perjeta and Herceptin.  I reacted mildly to the Herceptin with something called the "Rigors:" Sweating, shaking, and achy long bones, much like when I had the Neulasta. You all know from my last post that I ended up 24 hours later at the ER for an allergic reaction to the Taxol. Time to reconfigure.

Except that's not what happened. After I went home, nothing did, until I called.  I had to call them, even though I was in the ER!!  Last year, I was barely out of the ER before I was being seen.

"Well we aren't sure it was the Taxol," the nurse said. Yes, yes we are. I remember. Same reaction almost precisely,  but much, much sooner.

Nurse calls back: "the doctor wants to see you now." Ok, you bet. I do too!

"We have a plan,  no worries." The doctor explains. She's so calming. "We will substitute another drug I have in mind. But first, I need the allergist to look at you. And I will put in the request right now for your insurance for Navelbine."

Yeah, insurance gets to say what I get and what I don't get.

The doctor also explained that I might possibly have been resistant to the Abraxane now, so she didn't consider the third Taxane sister.  Well, at least now I know. Meanwhile, we both admire the work so far. Yes, even if it must be Taxol on steroids and antibiotics, I must continue. This is working!!!

I can't get in to see the allergist until Tuesday, so this week will be skipped, the doctor says. The allergist is to call her, so that she can put in for the chemo.  But we will be ready for what comes next.

I am getting ready today when I notice an appointment with the oncologist's PA pops in my appointments for Friday. That's when I notice the allergist's appointment is Thursday...after the chemo appointment. How did that happen??  I start working my way through a frustrating, difficult to navigate Interactive Voice Response (IVR) menu.

Every hospital CEO in the world should be forced to use IVRs every day. They'd clean them up in a heartbeat if they had to use them.

I have a critical work meeting as well. I'm waiting on hold for the one when I see I'm truly late for the other. I have to make a choice now...they need me in the meeting. I decide to hang up. My stomach is in knots.

Of course, someone calls me back while I'm in the meeting. I call back, wading through the IVR, after I'm no longer needed in mine.  I explain my situation in tears to the allergist recep...and she starts going into action. I get a nurse in allergy, she sets me up with the best appointment she can manage, when the hubby walks by. He's livid too, and the nurse patiently works him through what happened -- or really what didn't.  We both accept the allergist appointment. She takes it a step further and offers to call the oncologist's nurse and get them ready to. That was above and beyond.

But as near as we can tell, it was that nurse that didn't have the appointment right. Either way, we are now set up with an appointment, but it may be a bit late for chemo.

Dammit, I feel like every week that I'm outside of regimen means I'm outside of protocol, means that more cells are marching. My trust is gone. I have felt neglected ever since the rediagnosis.

I'm moving on. I have to.

Meanwhile, if I seem like a maniac on Facebook or my other accounts, be patient with me. You're my outlet for the insanity.

Oh, and I'm just as sick as I was before: symptoms are almost all GI, with smatterings of appetite, thrush, and my thyroid meds won't absorb. Lovely. How am I going to work now?

On the bright side: hubby and I have had many good talks, some stunning fall color and more. I'm ok. I'll be here for a long time to come. I just have to beware of neglect.

Ok, how's your treatment going? Post here, or in one of my forums. Or Facebook.  Love you all.