More Scans and Biopsies

I am living a torn life lately: I want to be in Texas, but I'm in two feet of snow in Michigan to see my doctor. We reviewed the latest CT scan. She has a slightly different take than I did. To me, the CT results suggest spots on the liver, and my bones are much worse. My antigens are in the 5000s. To her, she is skeptical that the spots are new or that they are even cancer -- they are the same spots we've seen before. She thinks the findings on my bones my be the xGeva making itself known.  So, she's ordered a PET scan. There's nothing like data to help us make the right decisions.

Merry Christmas from Texas, y'all!

If the spots on my liver light up, I have liver mets. If not, no concern. We soldier on. But if they are, in her mind, they need to be biopsied in the same way my skin was. The bones are less concerning than the liver: the liver mets will kill. The bones will just be a big pain in the....well, hips and other locations. So, she wonders if the liver mets -- if that's what they are -- are HER2+.

Human Epithelial Growth Receptor 2. That's what they call it. It's one of the factors that oncologists consider when determine how to treat the cancer. It is a "tyrosine kinase receptor." Sometimes, the cancer gets this receptor a little over excited, and it expresses too much, causing more bad cells to grow. Treating it often kills the cancer nearly completely (except for the hidden cells, apparently). I responded well for quite some time to a treatment focused on HER2+ cancers.

But the latest round of biopsies showed my skin to be HER2-. So we've been treating that, with "mixed" success. (See above.)

And here is where my own oncologist is just superior: she thinks I'm still fighting both. If I am, that would explain why I progress on one treatment or the other. Maybe I need to be fighting both at the same time.

That's what I've been saying all along.

And HER2+ cancers are really sensitive to treatment.  I damn near defeated them; leaving the HER2- stuff behind. Now, maybe we'll get them both at the same time. If she's right, she'll add Tykerb to my Xeloda. If not, there are other new treatments for estrogen positive cancers...and mine has always tested highly positive to estrogen. But first, I might have a little radiation to my skin. That way, I'm not fighting that. I have to set up a consult with that other brilliant doctor, the radiation onc.

So, as much as I want to sit in the warm(er) Texas sun, I'll slog through here for a few more days for my PET scan, head back down for the holiday to celebrate my first RV Christmas, and wait for what's next. I'm still on Xeloda, and numbers be damned, my skin is responding to it, if nothing else.  My sisters in treatment tell me that sometimes the antigens are high because of treatment. I'll chose to believe that's the case for me.

The Xeloda isn't horrible. I'm tired, my appetite gets poorer, my hands and feet are sensitive and I am as emotional as it gets...all within a three week cycle. My new cycle begins again December 19.  But compared to this summer's constant malaise, I'm feeling overall better. So, onward.

Merry Christmas from Texas, y'all. Thanks for your love and support. Feel free to shout back here, on Facebook or Twitter.

My Second Opinion: Three Hours of Disappointment

One of the hundreds of signs near
the many buildings on this campus.

I was warned. I just didn’t believe. I had to think that a research hospital that is studying the very symptoms I had been dealing with would be able to offer some insight and a treatment plan. Maybe this advanced hospital might have an upcoming trial – one hears about so many of them. It seemed so right when I arranged my visit.

MD Anderson disappointed me.

I was inspired to call because they are studying a monoclonal antibody reaction to new treatments – the very problem I was having. I had a list of questions to answer.  I gathered all the information that I could gather, and they arranged for the rest. My coordinator told me that I should reserve three to five days. I used all of my hotel points to reserve a five day stay at a hotel near the massive medical complex that is MD Anderson. She told me that they would complete my schedule after I met with my second opinion oncologist.

I was done in three hours. I met with a fellow, a social worker and the oncologist.  That’s it. I am welcome to call if I need. I will lose all of my points, having to check out early.

The fellow did well enough, taking our history and working his way through our questions. He and the doctor both examined my history and my situation carefully enough. The doctor questioned whether I should be on additional hormone sensitive treatments like Letrozole or Ibrance. He’s going to suggest we substitute Zometa for xGeva, because he is sure that my incredible debilitation for months was just that and nothing more: a reaction to the xGeva.  But overall, he didn’t seem very inspired to shake the tree and seek additional treatment. I heard nothing cutting edge, no advanced thinking. I can carry on, because apparently I'm just an average Stage IV patient.

The Xeloda seems to be working, and although it’s tricky to manage, I seem to be making progress. Unfortunately, I also have new skin mets appearing, then disappearing as the Xeloda attacks. My wound is still open. So, he is concerned. But he’s not interested in treating me, there are no trials that make sense, and he doesn’t think radiation is a good idea. (Tough -- I think it makes way more sense than this constant creeper battle.)

What chapped me further was his dismissive attitude. I explained to him that I am study- and data-driven, but despite my explanations about the studies, he still thinks there is no connection to thyroid meds. He mocked my diagnosis of “radiation asthma.” (You know, the problem that everyone on this thread complains about.)

He committed the greatest sin of all, as far as I am concerned as a patient: he was patronizing.  I think you know me well enough by now to know that doesn’t fly with me, ever.

When we were done, I realized I’ve been given a gift. I’ve had confirmation that the path I’m on now is fine, that MD Anderson is not as prepared to be cutting edge as they claim, and that I need not worry about the quality of my care. Clearly, I’m doing as well as I can expect.

My next CT scan will be in December. I’ll update you all.

Dr. T, thanks for being my partner, not Dr. God.
.

Update on Xeloda

Since so many have privately messaged me, I guess I need to update you all. I am one and a half weeks into the Xeloda, and the fevers have disappeared, the bone pain has disappeared, and the visible cancer is clearly improving. All good news.

Xeloda has lots of its own side effects. One of them is extreme exhaustion. I have to be on guard for that hand-foot syndrome. But I have to say I am feeling better overall. It's remarkable.

That leaves me with a scary thought: what if the pain and fevers weren't the Kadcyla, but actually the cancer itself, just like I speculated in my Rubicon post? My NP even graciously hinted at that.

Did I just dodge a bullet? Believe me, I felt like I might be getting close to something. I spent days in bed. I certainly noticed my thoughts turning toward...other things. Even now, I wish I did have lots of energy, because I would like to take care of my "stuff." I have lots of junk, I need to get it in order. Or in the trash. It all just seems like stuff. I'd still rather have the energy to travel instead.

I know I need to feel grateful for the save, but at the same time, I'm just so surprised. That seemed to come out of the blue for me. I'm glad I'm better, but I guess I can't assume that I will be at any given moment. I aim to be here for years, but aims and reality aren't always in concert.

Despite how much I know, despite my own activist approach, I still feel like I'm being dragged along on this journey, kicking and screaming. I am no hero, believe me.

We did get a quick fall trip in,  which had its own adventure. We are planning some big changes for the holidays. I need to see my daughter. I need to be warmer. We're going to have to navigate how this all works out. More logistics. More back and forth, trying to figure doctors and medications. But I need to do these things. 

I'm also on my full disability now.  At least, I hope so; it hasn't all kicked in.  Slowly but surely, we are working on the new normal.

Have I thanked you for your love and support? I really should. Thank you. Love you all.

Visiting? Well...Maybe

My dear old imaginary (so it's really not you) friend: 

I heard you wanted to come visit.  I love you. I'm so honored by your love for me.

Let's talk.

It's like Monopoly. You visit, I'm stuck.

Here's an awful truth: I might not want you to come. I know that's a hard truth to swallow. And it isn't universally true. But consider this:

When we last got together, I felt a little impaired, and you could see it, for sure. I might have been a little tired, but generally, I was slogging through. I ate most of a meal. I had some energy to do things with the occasional nap. I would go out to dinner, maybe have a glass of wine or a cocktail. I could manage most of my life. I could travel maybe a little, walk a bit, slowly. I could drive and do things.

Things have changed. A lot.
For the last several weeks, I no longer felt well at all.  I had a hugely bad reaction to my last round of treatments. Maybe the cancer is taking over. I don't know why, but I'm much sicker.

Some days, I never left bed except to head down to the couch. I am often in pain from head to toe, spiking fevers randomly. My new big social event each day might be a doctor visit.

You don't know this, and I'm fine with you mostly not knowing, but I can't promise I'll be in shape to receive you when you come.

I have nearly zero energy. 
Walking up the stairs makes me exhausted. I'm not going anywhere, except the occasional RV trip. I avoid crowds, I can't drink anymore, and I'm not eating. I miss dancing so very much. Crowds tend to make me ill. Bars are out. Hubby does the grocery shopping. It's a remarkable day when I can do it. I'm not driving much! In the RV and the car, hubby is driving most of the time, and I'll be honest: our last RV trip was kind of awful for me. This saddens me beyond what I can tell you. Some days, I take four naps just to drag myself through the day.

I like my house clean for guests.
That's why I never sent that invite for a barbecue. Not only am I not eating, but my energy to clean the floors, the bathrooms, put things away - it's missing entirely some days. 

You need to understand: having you come visit will compel me to try. You can tell me "it doesn't matter" all you want: it matters to me. It humiliates me. It is another reminder that this is something I can no longer do: be a good hostess. Your visit is a reminder of my loss. Having someone care and clean for me: even worse. 

I have lots of embarrassing moments.
Last night, I felt well enough to go out to a restaurant. Silly me! I had to run to the bathroom where I fell into the worst coughing fit, apparently a side effect of my new meds. My new chemo has lots of other embarrassing side effects and fatigue that will make me wary of visits.

There are a few things I'll make an extra effort for: life events, our daughter...big things. But I'll be bringing the RV, so that I can manage my awful symptoms in private. Get it?

This is my new so-called life.

I am grateful for your love.

Look, I know you love me. There are several sadists that were in my life. They have left me altogether, unable to face my diagnosis, perhaps, and definitely unable to overcome their own feeling of failure, for which they strangely blame me yet for sins I never committed, as far as I can tell.  It's bizarre, but I can let that and them go, because they show me who they are and are not. Please know I am grateful for you. I appreciate all of your good intentions and it is comforting to know you're always going to be there emotionally, if not physically. There are much bumpier seas ahead; please be prepared.

I would be remiss if I didn't say that some of you have been perfect masters at all this. Better than I would have been. Thank you!

Here are some tips that might help, inspired from Cancer.net:

1. Prepare yourself. You might be upset by what you see - and you'd be even more upset if I showed you my reality. Try to be with me, not your feelings, anger, resentment or restless energy.
2. Ask before visiting. Most of the time, I might say no, at least until and when I feel better.
3. Be flexible. Listen, I can't say if I'm suddenly going to have a bad day. Be ready to cancel.
4. Read my blog. Take a minute to find out how I'm doing. It will help you avoid saying things like "take up a hobby." 
5. Don't try to fix it. Do you know what HER/neu is? What oncotyping means? Did you even bone up on stage IV breast cancer? Then, why do you think you can fix this? The day is coming when there is no fix.
6. Don't undermine my decisions. Asking if I'm doing the right thing (or words to that effect) is the same mistake we moms make, asking our girls if that's what they are going to wear. Actually, I do not care if you do question me, but expect me to say less and less to you about the whole thing.
7. Be present. I won't want to see anyone for long anyway, so for a few hours, put away everything else, and I will too. That even means that restless energy you feel -- I found out what you did last time, and yes, it hurt my feelings. 
8. Deal with this honestly. I know you're not happy. How do you think I feel? Did you think I want to pretend everything is just fine? Tell me you're upset if you are…and be self-aware enough to know. 
9. Don't come if you're the least bit sick.  Or, I do have masks and gloves. I just shouldn't be the one to wear them.
10. Use Skype or Hangouts instead. They are pretty amazing, and works great for the daughter and us. I can visit for hours on Skype. Way less pressure. Just be advised that I might be in PJs.

Thank you, dear friend. Know my love for you is not less because of this. I just wanted you to know. 

Healthcare Update

I am on day 4 of my new medication: Xeloda. It is taken by pill, three pills twice daily.  It comes in a biohazard bag that makes me think my pee should glow in the dark, but so far...well, mixed.

Last night, I developed a random bronchiospasm (coughing fit) that made me run from the restaurant proper as fast as possible. (Coughing causes other embarrassments, like I'm a senior in a nursing home.)

I am as fatigued as ever, or possibly a bit worse. I nonetheless have serious sleep cycle impairment. I don't have restless legs, I have legs that are marching to Pretoria.

But early returns for the cancer visually look positive, so I may just have to suck it up somehow.  Another HUGE plus: I don't seem to be as painful and feverish. For the first time in months, I haven't taken Tylenol today. But I still may have meds on board from the bronchiospasm, so it's unclear.

Oh, and I finally have an appointment for a second opinion at MD Anderson. I called them because I feared what the reaction to Kadcyla was doing; they are studying something similar. And I'm in. Finally. Houston, I have a problem....

Reversing Polarity: From Positive to Negative

The HER2 results are in. 

As you may remember, the first biopsy did not have enough tissue to assay my HER2 status, but the second one surely did.  The dear doctor (I liked him quite a bit) took multiple samples from all of the areas, using carefully guided ultrasound. He did an amazing job. We joked that the lab was going to open the samples and exclaim “What is all this?” Nonetheless, they had enough this time, and the conclusion was clear:

I am not HER2 positive anymore. There was no HER2 response at all.

So, what does that mean? I'll explain: One of the most effective ways to target the cancer fight it to be able to target HER2.

Well, which is it? Negative.

HER2/neu is a protein on the surface of breast cells. (HER stands for Human Epidermal growth factor Receptor, not that you wanted to know.) In some breast cancers, it gets too active and promotes the cancer growth. Being able to target and kill HER2 positive cancer cells was a small revolution in breast cancer treatment. It is part of the recent improvement we’ve seen in breast cancer survival. The cells respond well to Herceptin, and some women are surviving DECADES because of the ability to kill these cells.

But, things can change. Positive to negative and back again — this can happen all the time, we are learning. It happened to me.

I know I was HER2 positive once, and the Herceptin/Perjeta/Navelbine worked for quite a while. In fact, I like to think that combo got all the HER2 positive cells. 

But then, it seemed to stop working. Why? Because I also had HER2 negative cancer AT THE SAME TIME. Now, it’s time to go after them. There are still several effective treatments for me. And studies and….lots more. I just wish we knew sooner.

I am ER (estrogen) positive, and strongly so. I am less PR (progesterone), really to the point of being negative. So what does this all mean?

• I am *not* in the HER2CLIMB study. Yes, I’m sad about that, too.
• As I mentioned before, knowledge is power. We now have a better idea what to use to address what seems to have been a losing battle. I’m starting Xeloda, a well-known oral chemo, on Tuesday.  I will now take pills to treat my cancer. No more infusions for a while!
• I will admit to some frustration, because I still suffer from Kadcyla syndrome (my new name for the fevers and aches) and it was wholly unnecessary. Kadcyla was completely useless. 

So, I have an appointment for a second opinion with….MD Anderson. I know, I’m shocked, too! I had been turned down but now I’m in. I had read that they are studying a similar syndrome as mine — one being experienced by many of the CAR T study participants. (CAR T therapy is revolutionary for leukemia and soft cell cancers. It actually cures. They hope to figure out how to make it work for solid tumors like mine someday.) 

But nothing is easy: There is a great, big tough side effect (Adverse Event, they call it) called “Cytokine Release Syndrome.” The symptoms are the same same same as mine. It seems that monoclonal antibody treatments (like Kadcyla) have some unexpected turns. Because all of this is so new, they are just learning now how to deal with it. When I read the article about MD Anderson’s work on the syndrome, I decided to try them one more time to share my experience. And, as our French tour guide would say: Voila! I’m in.

Meanwhile, I will have new regimens for the Xeloda. It’s known for some uncomfortable side effects, lots of them GI related. I will also have to avoid something called Hand/Foot Syndrome. Doesn’t this sound like a load of fun?

Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage.This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles.The redness, also known as palmar-plantar erythema, looks like sunburn.The areas affected can become dry and peel, with numbness or tingling developing.Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities. 

--October 15, 2017 http://chemocare.com/chemotherapy/side-effects/handfoot-syndrome.aspx

Oh, goody. Can’t wait. At least, I don’t have to do the dishes anymore! W00t!

Keeping it cool -- I may wish for this soon.

That brings me to my next post; one I will bring to you soon. We need to talk; I want to explain why I might not want to see you right now -- or, how to visit someone with cancer. 

As always, your targeted comments are most welcome.

Has My Cancer Crossed the Rubicon?

Years ago, I worked at a burgeoning sole proprietorship where the owner loved to kick off the week with his staff. Every Monday morning, bright and early, we’d gather in the biggest room in the biggest building to let him wax philosophic on the world, economics, libertarianism and our work, usually in that order. He was well-read and fiercely opinionated. One morning, in anticipation of a lecture on economics, he began with a question:

By Jacob Abbott [Public domain],
via Wikimedia Commons
https://commons.wikimedia.org/wiki/
File%3ACrossing_the_Rubicon.jpg

Can anyone tell me what “Crossing the Rubicon” means?

As usual, mine was about the only hand that shot up. I have been like that since I was a child; I had a sharp memory and retain some pretty strange stuff. "Crossing the Rubicon" is a reference to a river in northern Italy. It was the outer boundary of the Roman military dominance in 49 BCE; Julius soon-to-be Caesar had been forbidden to cross. If he crossed, he began a civil war.

Julius had other ambitions. He crossed and said “the die is cast.” Today, “Crossing the Rubicon" means making an irrevocable decision, or crossing a point of no return. 

Crossing My Rubicon

About a week ago, I awoke in a tremendous, new pain. This was not the bone pain/fever combination I had been fighting. This was something else entirely. It was 11 on the 10 scale of pain. I was on fire in my hips, up and down my spine, my head, everywhere I’d ever had arthritis, everywhere. Or so it felt. Over the counter remedies barely touched it. After trying to manage for a day and a drugged night with little relief, I got whiny and plead-y with my doctor’s office. They scrambled to find someone capable who would see me on a Friday afternoon. (One does not simply come in to see the Oncologist in this practice; they all have too many patients and not nearly enough time.)

They found someone awesome. I dragged my stiff rear into a different office, and the PA took a long look. An hour long, to be exact. She listened carefully to the symptoms, asked good, targeted questions, did her exam. She was reassuring (and correct) that I did not have mets fractures. This was too bilateral and diffuse -- it was widespread inflammation, possibly still the Kadcyla.

But then she reviewed my PET and my MRI. No brain mets, good news. But the number of sclerotic lesions in my bones is beyond concerning, at least to me. (Not to them: they call it minimal progression.) Even my skull has lesions, per the MRI. 

By the end of the hour long appointment, she told me that yes, it was possible that I have crossed the Rubicon: it is possible that my bones and the cancer are finally causing even this widespread pain. Or not. No one knows. But I walked out with my first ever Norco script…the one I’ll get refilled over and over from now on, most likely. That’s a Rubicon, too. I can count on one hand the times I've had Vicodin or Norco outside of the hospital. Even inside.

Xrays confirmed no fractures. And when I think about where these lesions are, I still think I'm dealing with Kadcyla. The problem is, I'm off. I’m done. I am well beyond the end of the cycle it and I should be getting better. I think am making progress, but it’s hard to be sure it will stay that way. I couldn’t get my flu shot because the fevers are still happening. Kadcyla seems to linger. But how long?

My biopsy is next week. I am reassured that they will do a more thorough job; the nurse read the notes to me: my doctor has requested several areas, not just the one tumor, and more sample, so the Human Epidermal Growth Receptor (HER2/neu) assay has enough tissue. This is a critical piece of information, and information is power. I will be in the trial if positive, and we'll do something else if negative. But no treatment until then. 

I will update when the updates come along. As always, I love your targeted comments. 

Reactions and Side Effects

My last round of Kadcyla hit almost immediately. I could feel the fever and the bone pain; taking a dexamethasone pill seemed a no-brainer, so I took one early in the morning the next day.

It wasn't long before I knew this one wasn't going well. I could feel the reaction come on, but I was helpless to do anything about it. I felt the welling of negative emotions; the shakiness of my hands and knees; the increase in heartrate and respiration. I knew what was going on; I was having a steroid reaction. I called hubby to come help. He did great, because he knows what to do. He held me and let me cry until the original sense of panic and mania subsided, and then took me for walk later to help smooth out the rough spots. Nonetheless, it would be three days before I slept more than two hours at a time, and I still don't feel well.

That's the downside of trying to treat the side effects of this chemo; steroids have awful side effects of their own, and I had one. I hadn't even taken a whole pill! Most of the time, once onboard, I feel great. This time, not so much. I am so grateful that this should be the last time I ever have to do this awful drug again. I'm moving on.

The Clinical Trial

I've applied for the HER2CLIMB trial.  This is a double-blind, Phase II study. That means that I'll receive certain standard of care treatments regardless -- some of which we might have tried anyway -- and there's a chance that I'll receive this new treatment as well.

The new treatment targets a part of the cell that signals growth, the Tyrosine Kinase enzyme. By interfering with the signal, it is hoped that the cancerous cell that has gotten the growth signal stuck "on" can't signal anymore. Earlier studies show optimism for about a third of the study participants.

To get into the study, I have to qualify. They are going to check everything from brain mets to tumor histologies again. Some of those are being scheduled now, including an EKG, another CT, lots of blood work and an MRI. I will be on another 21 day cycle, but there are many more pills involved. Herceptin is the only infusion -- everything else is a pill. I'll have to 1. stick around for treatment, and 2. travel farther to get it, both of which are also downsides.

The biggest concern that I have for this treatment is something called "hand-foot syndrome." Hand-foot syndrome causes redness, swelling, pain and blistering on the palms of the hands and/or the soles of the feet. This is common enough with one of the drugs -- the one I might have tried anyway. As near as I can tell, something about our hands and feet causes the chemo to sweat out and burn. My new caregiver assures me that I will be fine by following a specific care regimen-- she's ready to make sure of it. I'm finding that reassuring.

Thanks for Your Help...Ok, Really, No.

I sure do have lots of loving, helpful friends. And even though I have cautioned about offering unsolicited advice to cancer warriors, I've been inundated lately.

• One friend wants me to look into one therapy that they use for blood and lymph cancers. 
• Another wants me to call the a major clinic right now, because their new surgery/therapy combination is doing wonders for somebody they know. 
• Another has me heading to the medical marijuana clinic. (That's actually probably the most helpful right now and I am grateful for recommendations there. I think the state of medical marijuana is deplorable; I will welcome it into the fold of science-based medicine soon and divorced from the hokum we see now.)

Folks, I know you love me. You want me to "beat" this cancer. You want me to be cured.  I get that. Even though I have explained in detail what my situation really is, it went by you because you aren't the one living it. You don't know from solid vs blood tumors, you don't understand hormone status, Human Epidural Growth Receptor 2 status....everything that my doctor and I track in detail. I understand that I've written all of this in a way that's hard to absorb. So, you hear of people being cured and you want me to share the joy.

Here's the bad news: Cancer's a sneaky little bitch and it is different in all of us. All of these miracle cures and advances that you read about aren't necessarily going to apply to the people you know who have cancer.

• Some cancer makes solid, hard tumors, like mine. Others affect blood or lymph cells or make less palpable tumors. Treatments for each are wildly different.
• Stages of cancer determine whether you're getting surgery. I'm stage IV, metastatic. There's the same primary cancer in bones all over, in my skin and now God knows where else. That means no surgery because I'm basically riddled with cancer. What to do surgery on? Everything?
• The same goes for radiation, although I will consult my radiation oncologist just in case...but he's going to say "not unless you have pain." I don't have pain. 
• I have the extra joy of managing the other primary cancers, especially my thyroid cancer, and there is preliminary evidence that the treatment for it may be making my uphill climb impossible.

What may be worse is how strident some folks get with me when I resist their wisdom. No, you can't pay for my cure. There isn't one. You can't help me find my miracle -- it's not out there. There's treatment, and I'm using my resources and a pretty keen ability to judge to decide my treatment plan. But the treatment plan will be rooted in the exhaustive research they've done to figure out what works for my particulars. 

Let me be clear: the person in whom I invest the greatest trust in judgement is me. I get everything the doctors are talking about, sometimes right down to the molecular level. My data gathering is clear eyed and thorough. I will make the best decisions based on a narrowing set of choices. My doctors and I -- we have what we need. I will reach out to more just to be sure on my own. You really can't help me. You can't save me. Only I and the doctors can do that, if it's possible at all. 

So back off.

And here's something I can't say enough: At Stage IV, I'm never going to beat this cancer. I will not be cured. I intend to tame it into a state we call NED: No Evidence of Disease. But I will never live another moment free of cancer treatment. I still may live for years, but I will always be Stage IV.

Update

Sadly, the TDM-1 failed on nearly every count. Skin mets are worse, tumors are worse, my bones are worse. The doctor is signing me up for a clinical trial next.  I will keep you updated.

Cruising and Navigating -- How to Travel with Cancer!

Well, travelers, here I am, back from Europe. I did it! I managed to manage my symptoms, garner enough energy and enthusiasm to really, truly enjoy my trip of a lifetime. As you might guess, it wasn’t a walk in the park. In fact, sometimes park-walking was a bit more challenging than it used to be.

The beautiful RheinTal from the sundeck of the Viking LOFN.

The last time I posted, I noted that the new regimen, TDM-1 or Kadcyla, was having a odd effect on me. My immune system seemed to rally against it, and I had fevers and bone pain and low, low energy.

First round, it was a few days in a row. Second, more like two weeks. Now, it just is. I have to be on guard that my system will attack the TDM-1 all the time. My energy is significantly impaired.  Dealing with this on the cruise meant some adjustments and some innovation.

The day we left for Amsterdam, I felt only the usual “operating in jello” feeling. Herceptin users might be familiar with that feeling: Your energy is on constant drain, like a battery that runs out too soon. Frequent naps and lower expectations help.  I could feel some pain, and took Tylenol liberally. But it wasn’t long before the fevers showed up – yes, on board ship – and I had to do something, or I was going to be watching the Lorelei from my bed. When these fevers get going, no amount of Tylenol ropes them back in, so I had to act.

I opened my Felix medical bag of tricks, and I pulled out a dexamethasone.  These were left-over from my allergic reaction to the Taxanes, but it did wonders. For the rest of the trip, I carefully managed taking on board (my body) just enough steroids to fight off the long bone pain flu-like symptoms. It didn’t give me much more energy, but it did allow me to enjoy the amazing food and drink in greater quantity.  And, Voila! -- as the Alsatians say -- I had a cruise after all.

Because of this, I was able to truly enjoy the best parts of the cruise. If you’ve never sailed the RheinTal (the Rhine Valley), it’s an unbelievable site: castles, vineyards, scenic villages, kilometer after kilometer. I was able to get out and see the castles and ruins, the quaint towns and countryside, and the beautiful Black Forest. We are slowly posting the experience on www.sunstarlandings.com.

We even took a small hike. Yes, it was hard, but it felt sort of like normal us – we always loved hiking, and that day was a good one. Surely, a small hike wouldn’t kill us! Well, ok, we were 10 minutes behind everyone else on a 20 minute hike, but we made it most of the way. It felt like us, more than watching cuckoo clocks and glass blowing. Hiking.

Reminder to make your experience as you can.

Two years ago, I posted on an old travel blog that I was in tears. We had tried to hike to a spot we’d hiked several times before; it’s a lovely spot known as Alberta Falls in Rocky Mountain National Park.

I couldn’t make it. I couldn’t manage just the little bit more to go to get to the falls. I realized that this was my new normal (even before my Stage IV diagnosis).  It was difficult to accept. I took a photograph of my feet in Alberta Fall’s clear stream, to remind myself that this was a different, and new, experience.  That was my new life; the one I navigate now. I would have to find the amazing experience that I can navigate. So it was with this trip. There were no tears, really. In fact, I’m proud that I figured out how to make joy out of jello.  

My tips for traveling health-challenged:

1. River cruising is great. They spoil you. They wait on you hand and foot. There are many fewer passengers, so personal attention is easier.  This personal attention may help when you need more water, or you need your room fixed up due to a problem. The Viking River Cruise staff were the best.
2. Keep ambitions low. We often had a choice of activities; we usually stuck with the main provided activity or one even less ambitious. My traveling companions (my sister and her hubby) were great at helping us craft our own. For instance, the cruise offered a three-hour walking tour of a major cathedral, a chance to drink special beer made only in that town, and dinner in town with shuttle buses back.
   We opted for: a shuttle bus to town. We made our own tour of the (amazing) cathedral, at our pace. We crafted our own visit to a local Kölsch brewery, and we all made an extended visit to a coffee shop (water closets are hard to find), where we had a completely different experience than anyone else. We sat, watching bridal parties walk up the street in full regalia to take photos at their cathedral. Not marry, mind you, just take pictures. We would never have seen that on the tour.
3. Nap every day. Nearly all of our schedules began in the morning. By opting out of the cheese-making or other extra tours, we preserved energy for a small walk in town later.  Again, this was probably a more authentic way to experience the world, and more doable for me.  Or we’d be in better shape to enjoy the themed meal and even a little wine.
4. Think about food and drink. I actually ate pretty much everything, from local sausage to Flammkuchen, and I was relatively liberal drinking the local wine and a few cocktails. I trained the waitstaff from the beginning not to worry about me finishing my food. But there is no doubt that I ate less than normal, and yes, I’m still losing weight.
5. On the plane: Have drugs. Our eight hour flights were pretty decent, overall. They handed out (pretty useless) earplugs, masks and they had lots of entertainment. But it was still difficult and painful for us both. I had lots of Tylenol and prescription sleep aids. On the way back, they proved critical; that pain was getting pretty tough. If I hadn’t taken the right drug, I might have been in tears. Hubby just kept playing Texas Hold ‘Em and winning the plane. We survived.

Health Update

I have had some news since I’ve returned. The doctor was concerned about the constant flu symptoms, so she is sending me to the infectious disease doctors, just in case. We’ve checked nearly everything for hidden infection, and I really don’t think that is the issue.  I think my body believes that Kadcyla is the infection and is battling it mightily. Dammit.

That may explain why it doesn’t appear to be working. My latest CT scan says that we are seeing regression on my chest wall in particular. Tumors are back. Thickening is seen.

The rest of the scan seems ok: lungs stable, liver stable, bones...probably stable. My doctor told me that she’s ordering a PET scan again, meaning she wants to look at the bones more carefully. She expects to change my regimen.

What comes next?  Who knows? When I met with her we discussed a clinical trial. That’s sort of a big step; entering into the clinical trials world means walking further down the path of treatment for Stage IVs. She mentioned radiation on my chest – I am a big fan of that idea. I fully believe that if we don’t get my chest wall under control, I have no hope for the rest. I trust my gut on this – time to get this area locked down again.

So the news is exactly what I expected. I could see my chest for myself, for instance, and there was no other really bad news. I was hoping the bones would not look worse and it appears they don’t, at first glance. Maybe we can get a better look now with PET.  And my lungs and liver are stable. I guess that’s all I can ask for now.

Hit me up in the comments, on Facebook or Twitter, or wherever you found me!

Time for an Update

Is it time for an update? I suppose.

As you remember, I’ve moved from my regimen of Herceptin and Perjeta coupled with Navelbine to TDM-1 or Kadcyla. I’m on round three. It’s given as a single infusion every three weeks. Here’s how it’s going.

Pros:

• Much less heartburn
• GI is manageable
• Food tastes mostly fine
• Week 3 is almost sort of normal-ish
• It’s nice to not have to be in the infusion chair so frequently

Cons:

• I run fevers for about two weeks; I think the fevers are getting worse. I have to use acetaminophen or NSAIDs and really stay on top of dosing.
• Coupled with the fever, I feel that long bone pain I’ve written of in the past. I have this pain (it feels like you do when you come down with the flu) every time I develop the fever. It’s how I know it’s time to take some meds.
• I have low energy throughout the cycle, compared to my old self. It’s especially strong during the feverish part of the cycle. That means frequent naps, exhaustion from minor activities (like a trip to the bathroom), etc. It does seem a bit worse than the previous regimen. I am more “disabled.”
• I may not be making progress, at least with the soft tissue. My antigens are up significantly, not a good sign.
• Because I don’t feel that well, nearly everything I do is impacted.

The Post-Infusion Camping Trip

A dear friend wanted to spend her milestone birthday with me, so we arranged to go camping; she was hoping that we could just sort of travel and boondock, but it was Fourth of July weekend. We wisely made reservations. Of course, infusion day was the day before; nothing I could do. But we have an RV with all the comforts of home, although it is exhausting to pack – we managed to do it. We left for camp right from my infusion. It went ok that night; this was only round two so I wasn’t sure what the pattern would be. We were ready for the worst.

Our Campsite

I think it’s hard for high-energy people to be patient with us; my girlfriend brought a fun friend who is more at her scale, which was wise. I started out mostly ok, but by day three the fever cycle made itself known. We did have some fun: we ate, we saw some great fireworks, and I did what I could to be celebratory, but I also fell asleep in my camp chair, didn’t go for many walks, got pushed in a wheelchair and ate very little. I even forgot to bring out her birthday cake on the right day.

As time went on, the more difficult it became to reconcile the different energy levels. By the end of five days, I was ready to just be in bed, so instead of wandering with them, we headed home. (We had had a technical difficulty as well; wandering probably wasn’t a wise choice at that point.) That illness kept up for another week or so. I am just not up to much of anything when I feel like this...and this is becoming the majority of the cycle. Plus, it seems to be getting worse.

So much so that I thought that a strange lymphedema that I developed – it honestly looked like my breast was growing back – looked worrisome. I ventured downtown to see my doctor, and she sent me to the surgeon. Yeay! Another surgical procedure on my very favorite spot! (Yes, that is sarcasm.) It was mostly good news: a seroma (basically a large clot of congealed blood) not infected, no cancer seen. And eliminating it means that suddenly I am breathing better. I had no idea that that was an impairment to breathing. But once again, I’m tending an open wound to my chest wall. Gah!

That means I’ll be tending it while I’m on my European trip. Yes, Europe! In an expression of major financial and possibly medical irresponsibility, I’m going to take a river cruise. (But my doctor approves; it’s ok!) You’ll read more about it in my other blog, www.sunstarlandings.com. That type of cruise made sense to me when I arranged it many months ago; I’ll finally get to see all of those things I had not been able to since high school, the things that poverty followed by parenthood and middle class life denied me. Even if I'm not well, I can see windmills, vineyards, Deutsches Eck and Lorelei from my veranda.

The cruise is scheduled for week three. See how that works? But even if I’m not that well, I’m well enough to try. I’m going dammit! Then I’ll get the CT scan, the bad news and the plan for the next thing. I’m sure there will be something. There’s always something.

Feel free to share your thoughts and feelings below.

The Paper Chase

The raining paper scene from "The Paper Chase"

There is a great movie from 1973 about the rigors of getting a law degree; it’s called “The Paper Chase.” At one point, out sheer frustration, the protagonist climbs to the roof of the school’s classroom building and throws down the thousands of pieces of paper that composed the record of his academic career: notes, papers, worksheets -- a rain of paper. That image is what comes to me when I have to waste my time creating a paper trail, often needless, for the bureaucrats. I have such limited energy; I sure wish that wasn’t where my energy had to be focused this week.

I should explain why I need to do this: they need to pay me. That requires scrutiny. Here’s how I am lucky to survive now (and pretty standard for most American workers), and what I hope happens in the future:

• Short Term Disability:Duration: up to 6 months
  Benefit: Full Salary
  Healthcare: Normal employer-paid, with premiums and normal employee costs

• Long Term Disability:Duration: After 6 months qualification, if approved, up to (in my case) age 65
  Benefit: 66.67% of my former salary, minus SSDI, below
  Healthcare: 6 months, employee/employer paid, followed by COBRA (a federal program that lets you buy your own employer healthcare at full cost to the employee.)

• Social Security Disability Insurance:Duration: If qualified, as long as necessary, sometimes with periodic checks
  Benefit: Based on my long work history since 1976
  Healthcare: after 24 months, standard Medicare

and my tiny Ace-in-the-Hole, I was a state employee:

• Retiree PensionDuration: Life, after age 60 for me
  Benefit: 1.7% of my meager salary averaged over the last 5 years, multiplied by the number of months worked (so, not a lot)
  Healthcare: Retiree Healthcare, with a premium, deductible and out of pocket, similar to now

(Note: none of this anticipates what will happen when the new healthcare law gets past. I can't even begin to speculate, but none of it looks promising and will affect multiple programs. This also doesn't anticipate Medicaid, yet.)

So, you got all that? And all of them will require paperwork. Each actor involved in this drama has a fiduciary responsibility. In other words, they have to have proof, and that means paperwork: work records, doctor’s statements, scan findings, etc. My doctor sent some 65 pages over to my Short Term Disability administrator.

Somehow, in my initial qualification, they missed an important point, so I was put into the “Return to Work” workflow. If you are off for pregnancy, for instance, you’re going to return. So you give them a general idea when you expect to be back, and they check in with your doctor at that point. Somehow, the “Stage IV” was missed in all of the fun, so they expected me back to work June 19. But that information is buried online, and they did not communicate with me in any way until it was too late.

My first clue was a call on a Sunday. I didn’t recognize the number, so like all good Americans, I didn’t pick up. It was a MetLife customer service representative, wanting to know if “I wanted an extension.” Oh, No! What fresh hell?

I’m being paid weekly now, so any blip is going to hurt. Sure enough, I logged online. I had been suspended. I had to wait until the next day to talk with someone.

<rant>Ok, time for one of my little rant breaks on behalf of better UX. If you are a CEO of a company, and you have a Voice Response phone system, I want you to become a regular user and try your system, like every Joe that has to slog through it. You will find out that there are dead ends, hang-ups, and possibly the worst music you’ve ever heard. You’ll likely have to repeat the same information several times. You may try to talk to the machine, but she won’t understand your NBC Midwestern accent. Please do this, then fix your system and save us all. I’m begging you! </rant>

I slog through a few things and speak first with a nice CSR. He’s quite sympathetic when I start to tear up, and he gets me through (eventually and quite persistently) to my case manager. Sure enough, my doctor hadn’t sent through any of the information for scans and findings and a return date.
Um, I don’t have a return date. I’m Stage IV. While my regimen has changed, there are no new scans. But I’m really never coming back.

“Oh my god,” she said after a moment’s paper shuffle. “It says that right here.”
Ah-hah. They missed the important thing: I’m dying of cancer. Great.

Someday, maybe it will be common for folks to come back to work, even after Stage IV diagnoses. But that day isn’t today. I can hope for 10 years, but it isn’t going to be 10 years of wellness, even so.
There is a different process flow for folks who aren’t coming back. She promised to put me into that, to take this to her Unit Manager, and to get moving. Well, that problem seemed to be resolved.

Hahaha...silly me!
I wait a day, check online. Suspended.
Another day...still Suspended. Clearly, no paycheck this week.

Ok, time to navigate the wonderful VR system again. I get another great CSR. First he tries my doctor, but no luck for the doctor or the nurse. He gets ahold of my Case Manager again (I think they use IM to check for presence.) I wait a while, but I finally speak with her. She’s still waiting on the doctor for paperwork. “Why?” I ask. You basically have everything you need already and there are no new scans. She puts me on hold to go talk to her supervisor. (I should mention I’ve cried like three times already. This mortality stuff isn’t easy to talk about, even for me.)

Lovely hold music, happy hold music...walk and breath...hold music...remember, I need a nap after going to the bathroom!

She gets back on. I’m approved through August. Then they will start me in the process flow for long-term disability. Sheesh. I wonder: Even now, maybe they are hoping I’ll die first. The next day, she calls and confirms that the supervisor flipped the switch. Paychecks back on, next week.

When I spoke with the doctors’ social worker (thank God for her, the paperwork warrior) she had sent them yet another document that clearly stated “Stage IV, not coming back” in more medical terms. But come August, my scans will still be needed.

I can’t imagine what people do who’ve never worked with bureaucracy and have no head or patience for paperwork. The ability to manage healthcare and disability is a special skillset composed of patience, communication skill, good office management coupled with endurance and persistence. I learned it working in government. How do people who have no ability in this area survive? Is this why we have so many homeless and chronically ill? They couldn’t manage the paperwork so they just dropped out or died?

Sigh. At least I’m hearing now from the Long Term Disability people, and a claim is being opened. A new paper chase has begun.

Share your paperwork fun in the comments below or on Facebook or Twitter.

Checking the Boobies...I'm Never Going to Do That, So Never Ask!

Every so often, someone gets me to go postal over some "Breast Cancer Prevention/Awareness/SillyMeme" The latest travesty arrives in Facebook Messenger and reads like this:

Hi lady can you put a <3 on your FB wall, without comment, only a heart, then send this message to your chick contacts. This is for women to remember its the week of breast cancer prevention! Check your boobies!! Hold your finger down on the message and hit forward.

Messenger Screenshot

You would be surprised at the number of friends who felt it was appropriate to tell me to "check my boobies!" I don't have boobies, girls, I have scars. I check them pretty frikkin' regularly, like every damn day, in hopes that I'll find the metastasis has resolved. It hasn't. I.can't.even....

The post is annoying for any grammarian; the number of errors is overwhelming. The hearts are annoying. I admire author Jean Šrámková's retort on Medium, entitled:
Stop It, Facebook Women: There is no “Breast Cancer Prevention Week”:

She properly points out: There is no breast cancer prevention week. In fact, there is no "Breast Cancer Prevention." She outlines her objections in general to the post. But the best part:

“Boobies”? Seriously? Are we

on spring break at Myrtle Beach?

She goes on to say: "Mammograms do not prevent breast cancer, nor do breast exams or screening prevent breast cancer. Mammograms and breast exams detect cancer; mammogram results may increase and promote treatment. Huge difference."

The whole awareness thing is out of control. If you have bad genes, you may be able to improve outcomes by detecting early, and by avoiding certain behaviors. If you don't, pay attention to your hormones and yes, get your mamms regularly. It's once every two years between 50 and 74 now. But you won't prevent breast cancer by doing this. You may detect it earlier, which might or might not help you live longer.

To say that you can prevent breast cancer makes it sound like bad behavior causes breast cancer. My response to that: 1. Define bad behavior, and 2. It mostly doesn't. Out of control cells cause breast cancer. Period. Being thinner, not smoking, maybe drinking less and not taking supplemental hormones may help reduce the risk for some, especially those who have a host of genetic predispositions, but some of us can do none of those things and still be in the crosshairs.

What not to say to cancer warriors has been the subject of past posts, if you remember. Add this to them. Don't send me Facebook Messenger memes about checking boobies.

I may not have much advice about what to say; there isn't much. Make sure you don't lose track of me, I suppose. Stay in touch, and don't let petty disagreements rob you of time with me or anyone. You won't get it back. (Yes, the family awfulness is still mostly awful, with one notable exception -- Mom is happy. These sisters are still sisters and always will be.)

I really admired a metavivor named Holley Kitchen about the subject of what to say:

Her video came up today in my Facebook feed as a memory of my post from 2015. Sadly, she is a warrior no more. We've lost another one.

I cannot stress this enough: Forget awareness and prevention. Here's a great series of reasons why:

• The objectification is overwhelming (Save the Ta-Tas???), 
• Corruption is rampant in some of the big names, but most importantly, 
• The money isn't going where it is needed. It is needed to research the killer, metastatic breast cancer.

Cancer that never leaves the organ it invades rarely kills. Remember that. About 30 to 40 percent of folks diagnosed with cancer of any stage will have metastatic cancer at some point in their lives, whether sooner or later. We don't fully know why, and research focuses on these issues not nearly enough. We need to stop conducting research with stage 1 cells only. We need to ensure that our government has the money to conduct the real research that needs to happen. We can't let up now! About 40,000 of us will die this year alone. That's the awareness you need! You already knew about breast cancer, and that you need mammos. Now know this:

Give your money and your attention to the Stage IVs. The whole rest of the team needs them to survive, so that we all do.

Update on treatment:

I am nearing the end of my first round of Kadcyla. How did it go, you ask? And how is retirement? 

I have no data on efficacy. Side effect results are mixed. I develop fevers with and the accompanying "long bone pain" (like you're getting the flu, but much worse) keeps me down for three days or so.

Fatigue is still very present: I feel like a million bucks, carry a box upstairs and I need a nap...that sort of thing, every day. Sleep is not what it should be. GI issues are somewhat better: less heartburn, other issues more or less the same.

I'm still losing weight. I still have peripheral neuropathy, but maybe I have more hair and nails. An exam of my eyes showed there was nothing to worry about in that department.

It's not better or worse than previous treatments. I am worried about progress, but I'll need data to be sure. That will come after round 3 or thereabouts.

Hubby and I have enjoyed several relaxing, enjoyable days together. We aren't in the RV yet (too busy with caregivers every day this week) but we will be soon. I'm adjusting to my new normal of lower energy and appetite. I'm looking forward to some trips and many new things. Life is ok, under the circumstances.

Am I worried about my future? Right now, it's 50/50 that I get to live past the three-year average for people getting the treatment I'm getting. So, yes, I suppose that's a pretty present feature of my life. I own that now. My plan is to survive as long as I would have; it's just not an assumption I can make like it is for most folks. My odds are lower. So, back to the battle. No retreat. 

Let me know how yours is going in the comments, or on Facebook.

Perfuse Infusions

First, a quick update: we are done with the Navelbine/Herceptin/Perjeta combo. I may get my hair and nails back! Yeay!!

My chemo chair and infusion IV pole

I navigated the challenge of getting treatment in Texas without a problem. We found a great oncology practice and a nice doctor. She walked through our treatment plan and echoed what my oncologist had been saying. We even made new friends while we were there getting my infusion. We visited their home and had dinner/nosh. 

When I returned home, my regular oncologist decided that my antigen numbers aren't great (they keep going up), so it's time for a change. Instead of another round, or moving to other maintenance-type treatments, it was time for something else. 

Kadcyla, or ado-trastuzumab emtansine, is an interesting combination of that incredible Herceptin with a chemotherapy drug embedded within. Herceptin finds the hormone-receptive cells and the chemo enters the cancer cell and destroys it. 

Reviews are pretty positive. Fellow travelers report a few down days, but overall a feeling of wellness most of the three-week cycle. The reports of fewer side effects probably has to do with the careful targeting of cancer cells, instead of the spray-and-pray effect of most chemo. Travelers  with bone mets have seen good results. I'm really looking forward to this. As I write, I'm sitting in this chair and getting my first infusion. 

I thought you might like to know how this all works. If you remember, I had a medical device called a port installed under my skin. I sit down in the chair, and my wonderful nurse places a special needle into the port. After making sure it's clear and running properly, they begin a normal IV, usually starting with some saline. 

Ports and poles: how they work together

When the meds are ready, I confirm it's really me, and the nurse hangs the chemo bag and starts it running. This one will take 90 minutes, followed by a 90 minute flush, but if I do well, future infusions will be half that time. Hubby and I usually visit with patients and staff to pass the time. When I'm fully flushed, the clear the port with a blood thinner and alcohol, then they remove the needle. This is far easier than having them put an IV in a vein.

I'll update soon to let you know how it's going, but I'm feeling optimistic. 

Leaky Eyes and Treatment Plans

I wanted very much to spend some time with my daughter, so I had hoped that I'd be between treatments this April. I had arranged to be with her in Austin, TX for nearly a month, ages ago.

That's partly why my eyes were leaking last visit with my oncologist. She walked through the findings, showing me some of the spots where we had seen bone metastasis. I admit I hadn't seen the spots on my pelvis, and that was jarring. In fact, I do not have a accurate picture of all the locations: sternum, spine and pelvis.

Yes, they are stable. No new lesions seen, nothing bigger than before. But my mets are "generally diffuse." So, treatment will continue, as there is no evidence on my chest. It is better (probably not gone.) I'm pleased about that. But I can't look forward to ridding myself of the bone mets ever. We are shooting for stability.

By William Edward Frank Britten (1848–1916)-
The Early Poems of Alfred, Lord Tennyson,
https://commons.wikimedia.org/w/index.php?curid=22781448

Ok. (Leaky eyes.)

Why? What's wrong with me? This is good news!

I was tired, I told her. I was sick and tired of all the side effects, even though they weren't the worst. Still, the constant heartburn and GI issues, the neuropathy, the fatigue and the cognitive effects...they are tiresome and difficult. But still, I was hoping for a time where I could be free of all of this. She seemed troubled by my reaction, and I hate that. The doctor returned twice to my room to talk about what happens next. She ultimately decided that I would be doing two more rounds of the Herceptin/Perjeta/Navelbine, then onto something else. Probably, Herceptin and something like Zometa or Femara or...crap. Nothing she talked about sounded good. Maybe I should keep my tears to myself, as if I could.

So, to make my visit with daughter possible, my oncologist told me (well, told hubby actually) to find a doctor and an infusion practice down near where I'd be. That went well. I located a doctor at a large statewide oncology practice with an office about 10 minutes from where we park the RV. It has gone so smoothly, it's scary. What was most reassuring was the local oncologist, who walked through everything my doctor was doing, said pretty much the same things about the current treatment. I felt reassured.

But everything has changed with the bone mets.  I'm frightened for what comes next. The fact that I gotta do it matters not at all.

I'm spending money I feel like I no longer have to travel for bits of time at a time, instead of being able to go full time or even transition my care or go full time. Hubby is putting off things he needs to take care of.

Doesn't matter. Cancer don't care. I guess I'd better buckle up, Buttercup.

Oh, and can we please stop messing with the healthcare political football? It looks like Death Pools are still on the table. I have enough I need to worry about.

Stability is Good, Right?

There is a scene in my new favorite show, ABC’s “This is Us,” that had me tearing up recently. The show features the strength of familial love and commitment during the knocks encountered in life. One member of the multi-generational family has been adopted, having been abandoned by his addict father decades before. 

They connect late in his biological father’s life, as he faces Stage IV (my favorite) stomach cancer. Even though this successful son devotes all of his resources, the father’s cancer begins to take over. It is time to stop chemo.

As the son comes into the kitchen in the morning, the biological dad, William, seems not only happy, he’s ecstatic. He’s ready to do anything, and especially, to hit the road, despite hospice care. Someone asks what’s with him. The answer, more or less: “He’s on a high because he’s stopped his chemotherapy.”

I so understand that, completely!Chemo and the new biologics have their side effects, even if they are milder. Being off chemo means to feel well again; completely well. It’s a happy time. And it’s one I won’t get for a while, or maybe never. My regimen has been extended for at least two more rounds. And I will never by off some treatment. I can’t.

It’s not that the side effects are horrible, but they are a problem. My poor GI system is entirely messed up. If it isn’t one issue, it’s another in that realm, and the problems can be unpredictable and embarrassing. 

My nails hurt from the brittleness and tendency to split and dig in. My hair is just odd; I look like Carol from the Walking Dead with less hair. I have to cut the sides and back periodically or I look even odder. I can’t afford to lose anything off the top.

I have that tendency for infections I have to be vigilant about, especially urinary and bronchial (stay home if you have a cold, please!). I get tired and nap frequently. I get spasms and aches. Each and every one causes a moment’s concern that I’ve got mets there. 

Although my husband insists I’m fine, I feel some cognitive impairment as well. I missed my therapist appointment today. I really depend on her and I’m angry that that happened. Retiring now is the right thing: I would have dropped threads eventually at work.

But, the regimen seems to be working, both visually (my chest is looking much better) and even according to my latest CT scan (my comments in italics):

“BONES/Other: Patient appears to be status post bilateral mastectomy. Elliptical fluid collection in the left chest wall is stable. Small calcification or clip in the superior right chest wall stable.

I have a clip from my needle biopsy. But see what’s missing? No discussion of thickened walls or tumors, on either side. Am I NED (no evidence of disease) there? I can’t tell. I know my skin is still a bit mottled and red but far better. Moving on:

“...There are numerous sclerotic osseous (bone) lesions scattered throughout the axial skeleton of the chest. Overall distribution of disease appears stable from prior. No clearly new or enlarging osseous lesions identified.

“...LIVER: Nearly 1 cm low-attenuation lesion in segment 5 stable, likely a cyst. Subcentimeter low-attenuation lesion in segment 4, technically too small to characterize but stable from priors, also likely a cyst. Tiny low-attenuation lesion in the lateral left liver...also present on prior exams, statistically most likely a small cyst.

The liver is what my oncologist is most concerned about. What do they mean, statistically? I thought there were two lesions ID’d last time, I’d like more information about the third one.

Several other systems are reviewed; nothing in them, then:

"...OSSEOUS STRUCTURES: Numerous small scattered sclerotic lesions throughout the visualized axial skeleton of the abdomen and pelvis, again smaller similar distribution compared to prior exam. No convincingly enlarging or new lesion identified.

Pelvis? I don’t remember that coming up earlier, but it says it was. What does she mean by “smaller similar distribution?"

"...OTHER: No additional significant abnormality.
IMPRESSION:
1. Stable appearance of diffuse osseous metastatic disease...."

I hate scans that produce more questions than answers. I need my radiation oncologist to do his detailed review and tell me what’s really going on. Unfortunately, I don’t have an excuse to ask him, so I’ll ask my overly busy oncologist instead. But it appears that I have the soft tissues beat, and the now we need to target the bones. The Xgeva may be helping by halting further spread. This mostly seems like good news.

So, I will continue my regimen, or move to the next phase when the doctor feels it’s time. But one way or another, I’m going to be doing chemo/biologics or something for a long time to come.

I guess that’s the idea, right? In fact, if I’m not being treated, that’s going to be bad news.

Goodbye, Amy Krouse Rosenthal

Amy Krouse Rosenthal, speaking at TEDx Waterloo in 2010
http://www.flickr.com/photos/trevorh/4390728130/sizes/z/in/photostream/
Author =Trevor Haldenby

Periodically, someone praises my bravery or my strength. I really appreciate that, but I don't really actually feel strong or brave. I keep saying, there are some really dark moments for folks like me, and I'm there for all of them. I know the hidden truth. I'm a big baby.

I also occasionally post about friends I don't actually know:  Lesley Gore, Sherri Fillipo; people who touch my life with cancer, some of them warriors like me. I didn't know Amy Krouse Rosenthal, but her essay touched me as much as her passing today touches me.

She was an amazing human being, whose last great work was dedicated to restoring her husband and her family's happiness after the inevitable. She was advertising for a new love for him. But her endless love for him shown through, and it was easy for me to relate. I feel that way about hubby. Except I am way more selfish. 

And I would want to be as eloquent. And gracious. It was beautiful, and touching, and I cried for hours like a baby. Because I can, dammit! See? I'm not brave; not strong, and I'm often very raw.

Here's her essay and here's her New York Times obituary. God damn cancer. Damn it to hell!

Peace, Amy, to your beautiful soul and to your family.