Updates from Healthcareland

Catching Up: Good

First the good news: No liver lesions, period. My brain MRI shows no problems, either. That's a relief, because one of my newer symptoms are visual migraines and they would totally freak me out if I did not know better. (Visual migraines are pretty, don't hurt, but do interfere with vision. They last 20 to 40 minutes then go away. I have no idea why.)

Catching Up: Bad

The official findings from the PET CT shows that I do have bone lesions in my spine at L1, T1, T3 and T5.  These lesions are seen as new since the last scan, but may have been there and hard to find. They are "sclerotic" meaning that they are thickened. It is possible that they are already healing. One in particular really lights up; the others not so much. As a result, we know that I do have bone metastasis, but their exact status isn't clear. Were they there and missed before? (There's mixed findings on that.) Are they healing or are they just lighting up because they are cussed and stubborn? 

A sclerotic bone lesion -- mine looked similar

We had two choices to proceed: either finish out the 6 rounds of Navelbine, Herceptin and Perjeta, or move right to TDM-1 or Kadcyla. I decided to finish this out, because it is clearly helping in the soft tissues: the radiologist thought I'd had surgery to remove one of the tumors. My oncologist added Xgeva, the bisphosphonate, to the regimen. That may help the sclerotic bone get replaced when it dies off. It is a more clinical version of Prolia. I'm happy to report that Ms. Side Effects seems unaffected, for once. Aside from being tired, I'm suffering few effects at all, and none that are new.

It's a balance

Another interesting discussion happened around my thyroid meds. My radiation oncologist agrees with me, both from his own observation and from some early and older studies. Those studies do indeed show that being suppressed (having heavy doses of thyroid medication to hold off my thyroid cancer) may encourage the breast cancer. I've said this all along; it is wonderful to have my doctor agree, rather than looking at me like I have horns growing from my head.

Let's pause for a word to my doctors:

Doctors, don't argue with me. Seriously! I get reality pretty fast and I don't miss much. It's like a part of my brain is always researching and gathering data. I read peer-reviewed studies and understand what they are saying. I understand statistics. I come to strong conclusions most of the time. Most of all, every point of my body gives me data. I pay attention all the time. I know what I say is true.

Here's more indication (although not causation, yet):  A link is observed in a Harvard study, but another effect is seen in China. It suggests that T3 (Cytomel) be administered instead. Hmmm. I feel like the evidence points to T4 being toxic (Synthroid, Levoxyl) but T3 may actually be better. Anyone know an expert I can get a second opinion from?

Now, back to our regular programming:

The teeter-totter of treating my cancers

I need a fighting chance against this cancer, and it seems like the thyroid meds are making things much harder. I'm going to grapple this issue with my endocrinologist, but I sure wish they would all get together on their own. The studies indicate that being low on thyroid hormone improves breast cancer survivability. It does, however, leave open the possibility of waking up latent thyroid cancer -- and I'm likely to have just that. On the other hand, it's more survivable.

It's like being on a teeter-totter, and there may be no center of mass to balance upon. And I won't lie: I fear that this is the element that will kill me. I feel that resolving this is urgent.

And the seasons, they go round and round...

So, let's move to the carousel with the brass rings. Remember when I talked about the brass ring and work? So close, but fell off the horse because of this cancer? Well, I'm leaving the carousel behind entirely. This is it. I'm done. I'm heading for disability, probably in April.

I know what comes next for treatment won't be easy (I expect it will be much worse, in fact.) And this hasn't been easy. I have developed two UTIs, caught bronchitis, and developed a debilitating case of salmonella poisoning from trying to work. It's time to focus on health, and maybe an RV trip in between, to blog about America.

Getting off this carousel horse in April, if all goes well.
 I need to move on and focus on my health.

Here's how this will work:

First, I will have six month's of short term disability. Short term disability pays my full salary. I will have health coverage and I keep my life insurance. If (and this is not an if situation) I cannot return to work, I will move to Long Term Disability. LTD expects me to apply for Social Security Disability, then compensates me for the rest, up to 66% and change, of my old salary. I get health coverage for six months more, then move to Cobra. We all know how useless Cobra is.

However, I should turn 60. That means I become eligible for a tiny government service pension and another great benefit: healthcare from the state of Michigan. So, with luck, I won't find myself without coverage.

If I do, I'm probably screwed.

I figured it out: I'm going to cost millions to survive. A conservative estimate is $4 million, but it's likelier to be $10 million or more! Million. With an "m." Insurance is not an option.

So many people did not know that the Affordable Care Act took care of so many concerns, even for people with regular insurance. I couldn't be fired for the cancer (I could now; no one will enforce the law. Thank God I work for a great company and they are being Ah-maz-ing about this.)

Before, I wouldn't be penalized for a break in coverage. That will almost certainly change in the near future: to get rid of the mandate that everyone have insurance, they will charge exorbitant insurance costs if you, say, become unemployed and lose coverage. Any break in coverage will cost you loads more. 

And let me be clear: I intend to spend every penny.  I will do what I need to survive. I'm needed, Mrs. Peele.

We're still needed, Mrs. Peele

BUT...

However, if I don't have continuous coverage, or if my insurance becomes too expensive (up to $18K annually, according to AARP) I may fall into a "high risk insurance pool."  Or a Medicaid block grant. Or something that puts all the sick people in one place. Let's be clear what that is: a Hunger Games-style death pool. Millions will compete for limited dollars.

Certain states have tried high risk insurance pools as a way of easing the burden on insurance companies. They are all failures, having been starved for funds in the face of overwhelming demand.

My care isn't special. My costs aren't out of line for mets. Currently, Congress has discussed funding the high risk insurance pool with $2.5 billion.  Experts say 10 times that won't be enough.

So what do we do if there's no coverage for metavivors? Read more  about high risk pools at NPR.

source: American Cancer Society
https://cancerstatisticscenter.cancer.org/#/

Progression: The News We Don't Want

Updated: I just came home from a three hour session with a wonderful radiation oncologist. He went over every scan and finding carefully, looking at each piece of data like I do. They are jigsaw puzzle pieces that paint a picture only when aligned properly. Inconsistencies in my scans made him look more and more deeply. We walked through every image together. He called the radiologist. 

Findings: I actually had those bone and liver mets when we started this current round. Since then, every indication shows improvement everywhere -- or so we thought. 

I will get a few more data points with a PET scan and blood antigens. 

I'm still not sure what the future will be for me.

Update to the update: welcome to the roller coaster. My antigens are up significantly. My body has stepped up its campaign. There's more cancer. It would have gone down otherwise. Crap!!! 

Now what!?

Original post:

I had a mid-treatment CT scan this Friday. I read the results when they became available, because I sure it would be good news. You can see the reduction in my skin thickening and feel the reduction in my tumors. I am not done, but I was making good progress. Or so I thought.

It really wasn't good news:
1. Multiple new sclerotic osseous lesions consistent with progression of metastases.
2. New subcentimeter segment 4 liver lesion may represent a metastatic lesion as well.
3. Stable bilateral lung nodules.

Well, at least my lungs are good! But four rounds of chemo and biologics later, and the disease is progressing and traveling to more distant sites. My spine, sternum and liver are affected. This is terrible news.

This is a good question, posed at yesterday's
Women's March in Lansing: why does my
treatment depend on who is elected?

Another feature of metastasis is the periodic moments we survivors get to enjoy, in which you say: "OMG, I really am dying." This was another of those moments. We do things like plan for the insurance process to kick in. We research states that have assisted suicide and how our insurance will handle that, just in case. (It pretty much does not.) We start to think, "this will really kill me, and much sooner than I hope." We grapple the worst, and start to imagine what that looks like.

I am sure that the doctor will have another plan, as soon as I can speak with her. I am sure there's much more fight left. I still may have decades. There are vaccines and other trials that are really remarkable. But I've had the rug pulled out again. No wonder my fellow survivors hate scan days. 

Now, I have to replan my future and quickly. I will retire onto disability very, very soon. I don't care what's in store; I have to go now! I have to go before I can no longer take advantage  of what benefits I have left.

I stood on wet ground in front of the state capital yesterday, with 10,000 others, listening to people who, among other causes, are determined to have healthcare that makes sense. We are all frightened of the new mandates (or their lack): preexisting condition bans are gone; we can all be fired now. Lifetime caps are reintroduced: each one of my chemos is $30,000. I am an expensive date for any insurance company. I've probably already topped mine.

The high-risk insurance pools will become bureaucratically managed Hunger Games. It's so ironic that people were worried about death panels: you can call these pools "Death Pools. " They are taxpayer-funded pools of sick people, to alleviate the burden for insurance companies and make insurance more profitable.

Each one that has been tried so far collapsed with under-funding. Bureaucrats who have no skin in the game make decisions about where funds will be spent. We are going to have to fight for every dollar -- all while dying.

And let's not forget: I will be subject to even more out of pocket. It's a new year, so add another at least $7,500 to my $60,000 total out of pocket. But hey, some of it is in my tax-free savings accounts, so there's that!

I've said this before: the new healthcare situation may literally be the death of me someday.  But who knows? Maybe I won't have to wait long. I'll show them all and just up and die.

I know this is another dark post. I'll update you when the doctor gives me hope again. But it's good to understand how the cycle of bad news works. This is the beginning of another cycle.

Stage IV, Metastatic: What It Really Means

I love my regular doctor. She's a sweetie. But she does have two annoying traits: 1. She thinks most of what's wrong with me can be controlled by me, like my high blood pressure -- and I don't agree most of the time -- and 2. She thinks I'm going to be cured.

I'm not. That is the definition of Stage IV, Metastatic. I'll never be "cured." There are 155,000 of us in the US. Having metastatic cancer is entirely different that earlier stages. The treatment focus is different. Instead of eradicating, the doctors seek to keep the disease at bay.

Cancer.net defines Stage IV: "This stage means that the cancer has spread to other organs or parts of the body.  It may also be called advanced or metastatic cancer."

The Metastatic Breast Cancer Alliance, in their 2016 report, Changing the Landscape for People Living with Metastatic Breast Cancer, noted:

The dominance of the “breast cancer survivor” identity masks the reality that patients treated for early stage breast cancer can experience metastatic recurrence. The focus on survivorship obscures the fact that, in spite of decades of breast cancer awareness and research funding, 40,000 women and men still die of breast cancer every year in the United States with metastasis the cause of virtually all deaths from breast cancer.  

Metastatic breast cancer (MBC), also referred to as stage IV breast cancer, is an incurable, albeit treatable, progressive cancer that originates in the breast and then spreads to other parts of the body, such as bones, liver, lungs, or brain. 

While some progress with research and new treatments has been made in reducing mortality rates from breast cancer, median survival after an MBC diagnosis is 3 years—and this has not increased meaningfully in more than 20 years. Despite these statistics, research funding for MBC accounts for only 7% of the total breast cancer research investment.

We talk of hope for NED: "No Evidence of Disease." That's my current goal. But however long I may be given, I am going to battle this for as long as I'm given. Period. I may have a reprieve or two. Or sixteen. I may live decades. Without treatment, possibly a year or two.

But I will never be "cured."  I suspect that most people who get cancer are not "cured."

Treatment is not wonderful. I'm having a hard time. Tonight, I am home instead of celebrating Christmas with my hubby's band and some friends. I'm home because I feel like crap. I am in GI pain and I can't trust my system to behave. I can feel that long bone pain that says I'm reaching for the white blood cells I don't have (it's that bone and muscle ache like when you get the flu.) Speaking of flu, people may make me sick as a dog with simple colds. Flu shots don't work if you have no immune system to rally against the virus.

Nor is it easy emotionally. With all of the drama, I also feel emotionally drained, quick to temper, and frightened of our political world and the negative impact it almost certainly will have on me. I have to wrestle a demon that wants me dead and all of this makes that seem so much more likely.

There are folks trying to quantify our experience; the Metastatic Breast Cancer Alliance actually conducted a study and noted these findings, and I agree with every one of them:

• Emotional distress, experienced by a majority of MBC patients, is associated with increasing physical symptoms.  
• You follow this blog; you know how I feel. It's more than physical.
• Most patients initially report adequate emotional support from friends, family, and community, but many feel isolated by the experience of the disease; social stigma is felt by half of MBC patients, especially within the breast cancer community. 
• You see what has happened within my own family. My new hypothesis: it is easier for these "loving" members of my family to keep a distance, so they just used any excuse.
  
  Among other survivors -- they are just so sure that it won't happen to them, and they don't want to be reminded. Best to keep a distance.
• Individualized information about MBC is a critical factor for informed participation in treatment decision making. Information also plays an important role in coping by reducing uncertainty, lack of control, and distress. Many MBC patients do not receive adequate information from health care providers to enable them to understand the disease and its treatments so they can make informed decisions. Patients’ understanding of the nature of the disease and goals of treatment is often poor; many believe they will be cured. 
• I'm going to argue that that applies at much earlier stages. I want a mathematical calculator that helps understand the statistical benefits and costs. The only one I found is now defunct. (Too many updates, I suppose.) But we deserve a more honest look than we usually get. Most treatments are measured by a few percentage points. But that isn't all they held back from me: I never thought I would ever be Stage IV. I was a good girl and did what I was told. No one told me this, and they should have.

• Most MBC patients suffer multiple symptoms of disease and side effects of treatment that disrupt their lives—most common are fatigue, pain, and sleep problems. Despite this, half of patients say they are not routinely asked about their symptoms and express concern about “bothering” their doctors. 
• Ok, no one is going to accuse me of being shy with my docs.
• Financial hardship is a common issue for families dealing with MBC, and many patients do not realize they will likely qualify for Social Security Disability benefits or Medicare. Even, if eligible, the 2-year waiting period for Medicare represents a financially vulnerable time; many file for bankruptcy and face lower standards of living. Other practical needs may include transportation to treatment, home, shopping and child care, disability and insurance applications, and work-related issues, among others. 
• This!! A thousand times!! I now calculate $60,000 in medical costs out of pocket. I face a decline in my standard of living as I retire into disability. God help me if they cut that.
• A significant number of MBC patients report they are not receiving the help they need to address their physical symptoms, side effects from treatment, and emotional distress.
• All I know is that one dose of that anti-depressant nearly killed me by itself.
• Action and initiatives based on the findings from surveys of patients’ needs, and other research, are lacking.
• And this is the fundamental problem with MBC: it is severely under-funded. Research even now focuses on earlier stages, and utilizes early stage disease. No one gets it, no one researches it; we all die from it.

So, now you know. This is no walk in the park. It's not even a walk. It's a sprint. Ok, I'm running for my effin' life.

My Cancerversary: A Day That Lives in Infamy

I'm observing an anniversary: my 20 year anniversary of this awful cancer journey.  I remember it well: Our office Christmas party was in an hour. I was shrugging into my party bra, adjusting it, when I found the lump.  There it was, in my left breast, just under the hand that use to adjust the bra; it was about the size and shape of a small grape.

Where did that come from? A wash of concern; a moment of fear. And so it began. From that moment on, I have been in battle.

This cancer journey that has now become the fight for my life. I can now count four cancers, some 10 or so different instances, a journey from early Stage I to Stage IV metastatic -- it has begun to blur. But I am here to tell you about it.

I always remember the date, because it is the date that so many of consider infamous: the date of the bombing of Pearl Harbor. The date I found my cancer. Twenty years ago, today.

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.

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. 

Neglect?

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.

Reactions

When I had the Taxotere reaction years ago (two, almost), it began very slowly. I had itchy palms and feet. The next day, I had more, and they morphed into hives, and I began to swell all over. All of this took about 24 hours.

As the pre - medication drugs wore off last night (about 24 hours later), and that feeling returned, I thought, "uh-oh."  I hoped it was just a little nothing.  So I took some Pepcid (my tummy had taken a turn as well.)  Did you know that the ranitidines (Zantac) and famotidines (Pepcid) of this world are related to and work in concert with loratidine (Claritin) and diphenhydramines (Benedryl)? My docs load me up on this stuff, along with some sort of steroid, each time this happens, until the reaction slows and stops.

The new "do" Short, ready to go.

So when I took the Pepcid and the Benedryl and the itching broke through, I got hubby up and had him take me to the ER. We'd been having a few moments, honestly, and we weren't on best of terms, because we are both struggling with facing this new round of trouble. He wanted me to go to the ER right away -- I wanted to be sure -- and he was angry at me. But he woke with grace and, although he barely spoke to me, nor I to him, he trundled me to the ER, where the doctor treated me with solumedrol, more benedryl and a little more Ativan to take the edge off the solumedrol -- it hit me with a mania-like reaction of its own. They also gave me something for my high blood pressure, which had shot way up.

I had stopped taking my HBP meds because they were giving me constant sinusitis. On a lower dose of my thyroid meds, my pressure was pretty much under control, perhaps enhanced occasionally by a dose of CoQ10. Now, as the chemo nurses warned, I was in dangerous territory. So they worked to bring it down. I nearly fell asleep in the ER, and when they discharged me, they loaded me up with scripts for more.

If there's a reaction to be had, it will happen to me, folks.  I swear.

I will contact a host of doctors on Monday: the oncologist will need to choose a new chemo; probably Abraxane. My primary needs to find me a high blood pressure drug I can tolerate. I wonder if she'll want me at the allergist, too. More fun.

We grabbed a little breakfast, headed home and feel deep asleep.  We awoke around noon and I felt ok enough to go out and buzz my hair in preparation for the inevitable.  My mouth is developing problems, too. So clearly, my drugs are working. Let's just hope I can take them long enough to go NED.  That's where I am aiming. No Evidence of Disease.

Eyes on the prize.

Got thoughts? I got comments. Have at it.