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.

Not Dead Yet!

I've had my first new chemo/treatment. This is a new world and it was a bit of a challenge.

The Port

My New Companion -- A Port

First I needed to have a port installed.  You've heard me mention that it is getting difficult to find a vein. I checked into "Interventional Radiology" on Monday, and they put this small titanium circle with a silicon membrane in the middle under my skin, ran a little tube into a vein, and this will serve as my new injection site from now on. I thought I was going to be awake for it, but nope. After they put the drape over my head, and washed my skin up orange with iodine, I was out. I woke up to skin glue and a little bruise at the site, just under my right shoulder in my chest. I did feel a bit of pain over my right shoulder, like someone had shot at me through a Kevlar vest.  But today, I feel only a little itchy.

Thursday was new chemo day. I was so full of questions, and hubby and I were full of dread. I had complained to my therapist (I recommend a therapist) that this round of chemo felt differently. In the last round of chemo, I had been armed ahead of time with medications, instructions and all sorts of information. This time, a curt little phone call from the scheduler was all I got until I reached out to them.

"Patients who get chemotherapy a second time don't get a class," the nurse told me. What class? Someone sat with me the last time and explained everything in detail. "There isn't really much to do. Just show up when you should."

Ooooh-kay. Why am I not getting the same treatment as last time? Has this become just proforma? Or is it worse? There's no hope anyway, so we're just going to go through the motions. You can see why I might start to draw that conclusion. I knew what was going to happen last time. Now I'm at a much more advanced stage, and...nothing. Stage IV patients need much more, not less information! Hey, we're not dead yet!

When we arrived, we got Nurse Ratched.  You remember her from before.  Not good. Nurse Ratched does one task at a time. She speaks only with the patient, never with family. Her interpersonal skills are, well, ratchety.

At least she had more information:

• I would get Taxol every week. 
• I will get  Perjeta followed by Herceptin, every 21 days
• I would do this for 4 cycles, 12 weeks
• No weeks off, unless blood counts demanded
• It was likely that I would continue the Herceptin for another year (or, I've learned, as long as my heart holds out and it works -- both of which may eventually be a problem.)

She asked if I would like some Ativan for the anxiety. I said no, hubby insisted. Fine. I chewed a quarter tab and made it look like a half.  I wanted to not be loopy. Work might need me. I have to admit, it helped a bit to relax.

But hubby was furious. She wouldn't answer his questions or talk to him. That's why he was here! He needed to be my memory for the whole list of items we needed to ask: we were going to Austin and we had to work that into the schedule. I needed to understand my new schedule anyway. What side effects were likely; might I be allergic to Taxol and would they be ready for that, given my history -- on and on.... He was so angry he eventually had to walk away.

The fun then began. As she pressed into my port, it hurt a bit, but that ended quickly.  She began the drip, and I handled the Perjeta just fine. She waited an hour and started the Herceptin. That was fine too...until suddenly, I was shivering and sore all over.

They call it the "rigors." It's usually associated with a fever and is an immune system reaction. Apparently the Herceptin was not well-liked by my system. I began to cry -- I was filled with dread that I couldn't take this vitally needed drug. They ran and got my oncologist's PA. She prescribed Demerol. "This is not in my head," I said. "It feels just like the Neulasta reaction."  Nonetheless, they pushed the Demerol. Well, the shivering stopped -- apparently this is a thing that happens. So did everything else for about eight hours.

The rest of the day went uneventfully. The Taxol didn't cause a reaction, so far as I know-- I was mostly sleeping. The PA came back. I could hear them talking, but I didn't feel like opening my eyes, so I just listened to them whispering. I wonder if this will happen next time, but it might not. It wasn't an allergic reaction, it was an immune system reaction to something foreign. It won't be so foreign next time. If it does, I'll get happy drugs, plus they may move up the steroid I get with the Taxol so I don't react.  I woke up for good at about 8:30 p.m. (I was given the push at about 1:30 p.m.)  Sure enough, work had exploded. I did some work while hubby played LA Noire.

Today, I feel well. No nausea, I felt really energetic in the morning. I'm hoping this lasts, but it is possible that, as the steroid wears off, the wellness feeling will go with it. Eventually, this will catch up, though, and my system will suppress a bit. I may have neuropathy. Who knows what else. But I'll take today.

How's your day? Feel free to tell me in the comments.

Well, This Sucks: I'm MBC

Anyone who believes I'm a superhero about all this cancer crap did not hear me in the ultrasound procedure room, as the young doctor sat next to me and said, "So, there are findings..."

"Nooooooooooo!!!! I can't do this again!" I wailed. Wailed, like I was four. I was inconsolable.

I think that's all I heard. It's all I needed to hear. I could see the screen for myself. There were two hypoechoic, spidery things, one on each breast site.  There was this strange rash, a rash I had been asking the doctors to look at for ages, four of whom looked at it and passed on it...stretched between the two of them. The first tumor marked the very spot that last closed when my first mastectomy healed. The wound that took nine months to close. That.very.spot.

There was some possibility that it was just a lipid filled growth, either or both of them, so we'd have to wait for pathology:

A. Left breast mass, ultrasound guided needle biopsy: Invasive ductalcarcinoma, moderately differentiated
B. Right breast mass, ultrasound guided needle biopsy: Invasive ductal carcinoma, moderately differentiated

Both hormone positive, and something new: they are both HER2 positive.

Here's how Breastcancer.org explains it:

Genes contain the recipes for the various proteins a cell needs to stay healthy and function normally. Some genes and the proteins they make can influence how a breast cancer behaves and how it might respond to a specific treatment. Cancer cells from a tissue sample can be tested to see which genes are normal and abnormal. The proteins they make can also be tested.

HER2 (human epidermal growth factor receptor 2) is one such gene that can play a role in the development of breast cancer..... 

The HER2 gene makes HER2 proteins. HER2 proteins are receptors on breast cells. Normally, HER2 receptors help control how a healthy breast cell grows, divides, and repairs itself. But in about 25% of breast cancers, the HER2 gene doesn't work correctly and makes too many copies of itself (known as HER2gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression). This makes breast cells grow and divide in an uncontrolled way.

But regardless, I am now considered Stage IV, metastatic.  The cancer took a walk, left my breast, marched across my skin.

Yes, I'm devastated. Again.

I have a treatment plan. I start chemo with Taxol, Herceptin and Perjeta next week. The taxol isn't supposed to be as difficult, and the other two are these new biologics.  On average, folks are living for many years. Possibly much, much longer.

Then, there are immunotherapies like vaccines.

Yes, I plan to keep working, at least for now. Dammit, I need the money (because the true costs of cancer continue), and I do love my job. But I also bought an RV.

There are some things that I still want to accomplish:

• Going full time in a RV
• Traveling the world, although right now, I'll settle for thisViking tour. Or the Cathedrals and Distillery tours of the UK. Or the Hobbit tour of New Zealand. Or...
• Making sure my wonderful daughter finds someone who loves her as much as my hubby loves me
• Helping her get into her first home, if she needs us

Yes, we all are in shock and mourning. And we are living. We're enjoying our RV as much as possible.

Saying Goodbye to Someone I Didn't Know

Sea Glass -- Sherri Fillipo collected it.

First, I'm sure you'd like an update. My status is unchanged. I still plan one more surgery and hopefully walk away from treatment for a time, but I've been hampered by a much more mundane issue: my knee seems to have big problems. I've been trying to recover from a torn menicus and root, and a bad tendon, per my MRI. All I know is, it's nice to get on the plane first when the walk down the jetway is such a challenge. I put over 3000 miles under my belt hobbling with a brace and a cane, but I seem to be on the mend.

I'm posting today because we lost another reluctant warrior, and I feel she deserves a salute. You've noted that I put Sherri Fillipo and her blog, Living and Dying with Metastatic Breast Cancer, on my blog roll. Her honest and compelling blog described her journey with metastatic breast cancer.  Her words had impact; she helped me understand the concept that cancer that never leaves the breast never kills anyone; that the true survivors are those who have metastatic cancer.  (In that respect, *I* am not survivor. I am in limbo, and content to be there.)

I learned to share her unhappiness that so little is being said or done for the metastatic cancer survivors. Her grace and gentle spirit came shining through, despite her race with the inevitable. I knew what her outcome would be, and I like to think that I walked behind her on the path for awhile, supporting her spirit, even though she did not really know I was there.

She passed on April 10, 2016.  May she and her dear family be blessed with peace.  Thank you, Sherri.

When I began this journey decades ago, I knew I would make friends I would eventually lose, at least, here and now. The first person I met through a chat forum died just a few months later, and I began to wonder why her and not me? I was clearly on a different path than she; I was getting better and she was growing worse and worse. When she shuffled off the mortal coil, I wept for her, even though I don't now remember her name -- only that she loved to walk her dog on the beach in Oregon, and she had a friend who posted when she was too sick. Technology, as primitive as it was back then, allowed me to connect with someone states away, and I was touched by her life.

Sherri is another such soul. I'd never met the woman. I found her blog in an article listing best blogs for breast cancer warriors. I followed her for more than a year. I saw her farewell post, then an update. And she, too, has moved on.

I will keep my eye out; I will look for another nice blog where you and I can learn we are not alone in our journey. In the meantime, let's take a moment to remember a profound soul:

"The cure for anything is salt water -- tears, sweat, or the sea." - Isak Dinesen
Let me know your thoughts.

What's it like, you ask?

What's a mastectomy and an oophrectomy like?

It occurs to me that you might like to know how mastectomy and oophrectomy (ovary removal) procedures go. I thought I'd go ahead and share my experience with you, in case you ever need to walk this path.

The day of surgery, they gave me a little Versed to help calm the anxiety (which I rarely feel in any surgery) but that really releases the endorphines. I start talking every time. Hubby tells me I started firing off a list of things to do after my surgery during the first mastectomy. I honestly don't remember this time at all. They started the drugs, and wheeled me away, and I woke up five hours later -- but it seemed like only a few.

I was on Delaudet, and nice opiate that they give to manage the pain, but it made me sleepy. I was awake long enough for them to tell me everything went well and that everyone thought I looked great. They were all very positive.

You squeeze this into your fist, then
close the valve, creating negative pressure.
The other end is placed near the
surgery site well under your skin.

I remember expanding my chest with air, and feeling relieved. It was gone. Another two sources of worry, out of my life.

So, you ask, what about the incisions?

I awoke with large surgical pads over the incisions for my breast. I couldn't see anything under it all, but I really didn't care this time. I knew I had a large incision, all stitched up, starting from about my breastbone to under my armpit, pretty much along the axis of my former breast. I could feel the JP drain under my armpit. The drain collects lymph fluid and blood from the incision site, and prevents seromas, with are big, painful swellings that can't drain because of the injury done to the lymph system.  If a drain isn't installed, the fluid has to be removed with a needle. The drain doesn't hurt if you can avoid moving it suddenly.

To keep it from tangling, we pinned it to my lovely hospital gown.  Meanwhile, my GYN surgeon explained that I had three holes in my belly that were superglued together, no fuss no muss.  I had also had quite a few samples removed, so I was bleeding mildly. I was a mass of tubes (including the IV pole) and wires.

The gynecological surgeon would have sent me home, but the mastectomy surgeon likes his patients to stay overnight. That harkens back to the protests over drive-through mastectomies. As American healthcare started to move in the direction of outpatient surgery unless absolutely necessary, women complained that they were being sent home from mastectomies far too quickly and callously...they called them "drive-throughs." Insurance companies were pressured, and laws passed in the late 90s: no more drivc-throughs. So, I spent the night.

I slept quite a bit, but I had to wake frequently. Now, I could have asked the nurse to help me to the restroom, but I couldn't wait. So, two or three times, I awoke, unplugged the IV pole from the wall and untangled the phone cord, wrapped my JP drain to avoid tangling and pulling, and headed to the nice bathroom. It was quite an effort.

This hospital stay, I couldn't eat anything but a liquid diet, though, so I didn't get to enjoy the hospital's great food until the next morning.

I headed home the next day, and I was glad to go. I started eating -- soft foods the first day -- and I have a few restrictions, like not lifting more than 10 pounds. I soon realized: that means no shopping cart, and right before Christmas. In fact, I overdid one day doing just that. I have to take it easy, rest more frequently.

I am recovering slowly, but my sleep was impaired for a while, I'm pretty emotional and I have that jangly feeling all over the incision. I'll get better, and I will be ready for work when I go back next week...I just can't lift anything.  I'm really anxious to have the jangly nerves settle down. My abdomen already feels better.

I've come to realize that I go through a few weeks of emotionality, a sort of PTSD, after each surgery, so I'll have to reconnect with my therapist.

Surgery: easy peasy. Well, ok, not really, but it's fine. Really.

How was your experience? Feel free to comment here, on Inspire or Facebook.

New Year, New Normal

Keep Walking

Thank God it is 2016.  I am so glad last year is done.  It has been 17 days since surgery, and I'm making some progress:

• They removed the drain after the first week. 
• The stitches were removed the second.
• I feel fewer tears and pulls in my abdomen.
• All of my pathologies are in.

They were interesting. All of the tissues sampled were benign, including breast, ovaries, tubes, and the polyp on my colon -- all except for the endometrium strips. The report indicated that the sample was too small, but that one tumor marker (p53) was overexpressed, but another tumor marker wasn't present. The pathologist suggested that it be tracked.

No, no, no.

I don't want to track anything else. I want it out. So, I'm not happy. We should have taken the uterus when indicators started to go negative. I will be discussing this with my surgeon next week. The uterus has got to go. If he doesn't agree, I'll be getting a second opinion.

I'm going through all of this new drama because of the Tamoxifen. Effin Tamoxifen.

My recovery is going well, I'm happy to report. I'm ready to be all healed, but I still have jangly nerves under my arm and around the incision. I can't push a shopping cart, lift or do things with my abdomen. I can walk, but I can't dance yet. (Did I mention I love to dance?)

I also have to figure out what to do about oncology. My trust is low to zero that there is another treatment solution for me. My bones are too brittle for the other hormonal treatments like Arimidex, and my heart probably won't stand the assault, either.

I think I may be done with everything for a while. I may have to just wait and see what shows up. I just don't think I have any reasonable options left.

My only other dilemma: to bra and breast form or not? Right now, my little flat chest is fine.

Update: The GYN Surgeon does not know what to make of the data from my endometrium samples; they fit no category so they have no protocol. The tumor board will review it.

Yeah, it is coming out.

Let me know what you think, either here, on Inspire.com or Facebook.