My Fourth Week on Piqray and Faslodex

This week has been a doozy. Lots of things going on involving cancer and not involving cancer, losses and victories, sadness and celebration. This is becoming normal for us, although I can’t get used to the amount of my friends who are dying.

Anyway, here’s my list for this week …

  1. I’ve added back in some carbs after reading some suggestions and I frankly feel much better. Sugar has stayed pretty stable thus far.
  2. The nausea has remained rather consistent, which hasn’t been fun. It feels like being pregnant and I think my go-to anti-emetic, Kytril, since I’m allergic to Zofran, isn’t working well for this type of nausea. Definitely something to talk to my medical oncologist about.
  3. No rash, but my face is so dry. My sister has been helping me to find good moisturizers to use and I’m constantly slathering myself in cream.
  4. And another note, my poor nose is so dry that I’m getting regular nosebleeds too.
  5. A side effect of the nausea and diarrhea I’ve been experiencing is that I’ve lost some weight. Not that I really needed to loose any, but my clothes fit a bit differently and that isn’t a bad thing.
  6. There was some weirdness this week with the pharmacy at my cancer center. There were two scripts in the system and despite my doctor’s nurse practitioner discontinuing the lower dose and renewing the original higher dose, there was lots of confusion.
  7. I’m not very patient with confusion. It feels completely wrong that the medical professionals get things so mixed up and I have to keep checking up on things.
  8. Final loading dose of Faslodex is today, along with some bloodwork. Tumor markers haven’t changed much but they weren’t super high to begin with since we caught the progression early.
  9. Some of the women I know on Piqray are really struggling with getting it covered by insurance.
  10. Thankful for the good friends I’ve made who have helped me with connections to people in the right places.

This weekend is going to be super fun and I’m looking forward to focusing on loving on my boys, seeing some dinosaurs, and some special time with my sweetie.

My third week on Piqray and Faslodex

Outside of a little storm we had this past week, things have smoothed out with the transition to the new meds. I’m super thankful that we didn’t sustain a direct hit by Dorian, but there are many other people who didn’t fare as well. We’ve been collecting a variety of aid items for the people in the Bahamas all week and if any of you, my readers, want to help, let me know.

Here’s my list of updates from this week’s experiences with the medication …

  1. The Metformin CR has kept my sugar under control quite well and the other side effects have become more manageable.
  2. Any time I succumb to my love of bread and carbs, I see a corresponding increase in my sugar. So, it seems the diet I need to utilize is one that cuts all carbs out.
  3. Fun fact, grapes have a LOT of carbs. Who knew?!
  4. I do have some extremely dry patches of skin, on my face of course.
  5. No rash from the Piqray, but I do get redness where the Faslodex injections are inserted.
  6. Having food in my stomach is a must when I take Piqray. The nausea is sooooo much better when I remember!
  7. Claritin is a much more tolerable anti-histamine than Zyrtec for me.
  8. Still not entirely sure how medical marijuana interacts with Piqray but I’m following the same protocols as when I was on Ibrance and that seems to be working.
  9. Children stuck indoors during a hurricane literally bounce off the walls.
  10. Friends are a necessity!

Happy Friday, everyone.

My second week on Piqray and Faslodex

Last Friday, my sugar spiked to 268 😳 and I had to stop taking Piqray, while starting Metformin, until we got the sugar under control. That set up a truly miserable weekend as I was not aware that I would get ALL THE SIDE EFFECTS from Metformin; truly, it was miserable. Then, I saw my new endocrinologist and I learned a whole lot more.

Many people (maybe as many as half) of those who take Metformin are miserable. The solution? Metformin CR (continuous release). Seriously?! My fault for starting on a Friday when I couldn’t get to anyone over the weekend, but I’m still flabbergasted that this is what happens and I had no idea.

I’m the first person to be prescribed Piqray in my medical oncologist and endocrinologist’s practices. This is an odd position to be in. My medical oncologist has asked lots of questions about what people post in the online Facebook group. I’m literally only the second person at my cancer center to be on Piqray. My endocrinologist kept asking, “but what is the mechanism within Piqray that causes sugar to spike?” Hopefully when he figures that out, we can all benefit from it. For now, I’m taking the Metformin continuous release and I’m back on Piqray at the highest dose.

While my doctors are not ignorant of the psychological affects of the struggle to get the dosage right for me, I made sure to tell them how awful the weekend was. Not only was I feeling miserable, but my whole family had major PTSD reactions. I was absent a lot from family gatherings during 2017 during chemo and surgical recovery and this past weekend felt a lot like that.

For me, other than feeling miserable physically, I was also in the midst of a minor (bordering on major) panic attack most of the weekend since I wasn’t taking any cancer medication and the jury was still out on whether I could still take Piqray and at what dose. I get that two or three days probably didn’t do much, but being unprotected by any medication caused serious anxiety.

This cancer stuff sucks. All the way around. It’s hard on everyone.

And now for my second set of Faslodex shots … at least the nurses get to catch glimpses of my tattoos. 😉

My first week on Piqray and Faslodex

I started Ibrance and Letrozole in August of 2017. Perhaps it is fitting that it was almost two years to the day that I had to change my regimen because of progression. Yes, it’s a mild progression and I’m clinging to that. So, I’ve now been on Piqray and Faslodex for a week and I’ve learned a few things that I would like to share, in no particular order.

  1. Faslodex shots are not fun.
  2. Faslodex side effects are more tolerable for me than Letrozole, but the first few days were a bit more intense than I was expecting.
  3. It is absolutely necessary not to be standing on the leg where the shot is being administered. Thank you to all of the people who warned me about this!
  4. Faslodex shots (there are always two) must be administered in the top of one’s gluteus maximus and always at least room temperature.
  5. Faslodex shots are not defrosted until one is in the infusion center, so plan for an extra 45 minutes unless you make a deal with a nurse.
  6. Zyrtec makes me drowsy and irritable.
  7. Food is a must when taking Piqray.
  8. Piqray is a weird name.
  9. Piqray needs new packaging that is actually child proof!
  10. Why couldn’t they just send one pill per day?!

There you have it, my ten new pieces of information as I embark on this new medication combination. Still trying to figure out drug interactions when it pertains to CBD and THC. Never a dull moment but this change has been particularly disruptive, probably at least partially because it has been a while since a change was necessary.

I’m still angry at my cancer. I’m still upset that it took me so much effort to get these meds.

And now I’m headed to yoga.

Our Health Care System is Broken

I understood this from an objective perspective prior to my terminal diagnosis with Stage IV metastatic breast cancer. I have fought with insurance companies for decades as a lawyer and hearing that the system needs to be fixed in some or a lot of ways is not entirely unknown to me as a concept. There is, however, a large discrepancy between knowing something and experiencing it. In other words, fighting on behalf of a client is far different from self-advocacy.

Case on point, my newest prescription, Piqray.

Some of you may remember that I had a PET scan on August 2nd. On Monday, August 5th, I learned from my medical oncologist that I was experiencing progression. She labeled the progression as mild since I “only” have two new lesions in my bones and there is still no organ involvement. We decided, during that appointment that I would start Piqray and Faslodex as soon as possible. She submitted the prescriptions electronically while my husband and I sat in front of her.

It is difficult to describe the amount of anxiety that follows the news that cancer is growing unchecked, that the medication is no longer working.

It is extremely difficult to describe the amount of anxiety that follows the news that you must start a new medication, with new side effects.

I waited a few days before following up. My insurance company didn’t have the prescription for consideration, but I was trying very hard to be patient, which is decidedly not in my wheelhouse. When I called and emailed my doctor on Friday, the 9th, I was finally told that the prescription never made it to the pharmacy. My medical oncologist is in the same building as the pharmacy and they use the same computer system. I’d thought that would help. Nope.

Despite the fact that my medical oncologist’s office knew that the pharmacy didn’t have the prescription, no one walked the prescription to the pharmacy (a distant journey on the same floor of about 2 minutes) until Monday morning, the 12th. When I called to find out the status, I asked for the required internal review to be expedited.

I called the following day, I was told it was processing and there was still no communication to my insurance company.

Wednesday, I had finally run out of patience. When the first person to answer the phone at the pharmacy had a snarky attitude, I insisted on being transferred to the person actually in charge of getting medication approved. There, I found out that not only was the internal review not expedited, they then called the wrong insurance company.

Um, what?!

I literally was bouncing back between my insurance company and the pharmacy all day. The people in the call center that kept answering my calls started saying that they recognized my voice. When the pharmacy finally got everything sent to the right place, I sat on the phone with the review team at my insurance company while they approved the medication. It took 5 minutes, if that, once they had everything from my doctor.

At the end of the day, my medication was ready for pickup on Thursday, the 15th, and I was ready to start when I received my chemo training, but I literally spent approximately 5 hours on the phone Wednesday (that doesn’t count all the calls and emails in other days) to make it happen.

5 hours at my hourly rate while I was working most recently as a lawyer comes out to $1,875.00. Think they would pay if I sent a bill?!

As a patient, I do not think that is ok. As a patient, the amount of stress and anxiety this caused is unconscionable. We are told over and over to reduce stress, that cancer is fed by stress and the byproducts of its affect on the body. And yet, the very people who are assisting me with fighting the cancer cause extra stress.

Oh, but it does get better …

On Friday, I had my scheduled chemo education and the first Faslodex shots. I spent nearly the entire day at the cancer center and learned literally nothing new. A nurse practitioner literally read the drug insert to me and when I asked knowledgeable questions because I’ve been doing A LOT of research, she either gave us answers we knew to be wrong or she didn’t know. For instance, diet is a huge issue with my new drug and she said to simply avoid processed sugar. I spent hours and my insurance company paid hundreds of dollars for that. Then, I learned that the modus operandi at the infusion center is to de-thaw the Faslodex shots (which takes 30-45 minutes) only after one physically checks in at the infusion center. I’d been in the building for hours and checked in when I arrived but didn’t go all the way up to the infusion center. If they’d taken the shots out when I arrived, I wouldn’t have had. I’m working on a solution for this, but as I explained to anyone who would listen, if I have an appointment at a certain time, I actually expect that I will be seen at that time. Crazy, I know, but I do have other things to do and wasting that much time three times this month!? Oh, hell no.

The health care system in our country is broken. I have private insurance, so everyone working with me has to appease a for profit company, a company that is looking to deny claims in order to turn more profit. My insurance company has only had the temerity to deny one thing last year (this is one thing denied in the two years since my initial diagnosis). They’ve not attempted to deny anything else, but that is always something to be concerned about, to be ready for.

Why?

Why should anyone struggling with a terminal illness have to deal with that? Why should anyone have to worry or budget for medical bills that should be covered by insurance?

Why?

Yes, I’m going to get my medicine. Yes, we are hopeful that this medicine will give me more time. Yes, alls well that ends well.

No, it should not have come to this. No, patients should not bear the burden of fighting with the very people who are supposed to care for us.

Our health care system is broken and it needs to be fixed, before it kills those of us it is supposed to be helping.

So long Ibrance, two years was a good run

Progression was not the news we were hoping for this week, but then the unexpected paths that life has brought us has been par for the course over the last few years. Expecting the unexpected is a difficult adjustment to make and clearly I’m not quite there yet. Two (2) years of stability after the initial shock of the diagnosis had, in many ways, lulled me into expecting that status quo to last.

Last Friday was my sixth PET scan.

We heard nothing over the weekend, which was not a good sign since my medical oncologist has been extremely consistent about calling me over the weekend after a scan to give me the results.

Monday afternoon, I met with my medical oncologist, Dr. Grace Wang, at the Miami Cancer Institute. She delivered the news with a matter of fact compassion that we’ve grown to expect from her. Not only did we discuss the “mild progression” that the PET scan showed, but also her plan. She’d been busy, consulting with other doctors and reviewing the details of my genomic and genetic markers and mutations, yet she started the conversation by asking what I wanted to do, if there was a trial I wanted to pursue. She’d also presented my case to a molecular tumor board, gleaning more perspectives.

Bottom line, I have two new lesions, one in my spine and one in my pelvis. The rest of my bone mets are still inactive and dead or still dying. It is definitely a noted silver lining that instead of dealing with hundreds and hundreds of mets all throughout my skeleton, we are only dealing with two (2).

Yet, those two are two too many.

I’ve learned well over the last two years that medical oncology is both science and art. Yes, the medication is based on science and research. Understanding the body, its processes and the cells, the cancer cells and otherwise, is important. However, there is still so much that we don’t yet know. So, when the cancer figures out how to get around medication that was designed to keep it in check, then the scientist must also embrace the art of anticipating the next move the cancer cells might take.

My medical oncologist is both scientist and artist.

I’m so thankful for that. Truly.

Even though the progression is mild, the fact that my tumor markers have been rising over the last few months, communicates that the mild progression we are seeing right now is likely the harbinger of a major progression. In light of this development, we are in the process of changing my medication from Ibrance and Letrozole to Piqray and Faslodex. We’d already completed the testing and paperwork necessary to confirm that I have the mutation (Pik3ca) that Piqray targets.

I am thankful for the research that makes the medication I will be taking possible. I am thankful for a medical oncologist who cares. I am grateful for the support I’ve been offered over the last few days.

I’m also really fucking angry.

I’ve been living with this disease for 2 years and while it hasn’t been easy, we’d hit a plateau where I finally felt as though we’d adjusted, we’d relaxed. Probably too much. The reminder of the fact that cancer will take my life, that this disease is definitely not chronic, that there is no cure, that the best medication science can offer right now will only work for a glimpse of time, sucks big time.

I’m thankful for the time with my family that the current medication gives me. At the same time, I’m so angry that I’ll miss out on so much. I’m so angry that the cancer is able to get around the best we have, that allowing the doctors to inject me with poison for more than two years, resulting in hospitalizations and blood transfusions and many many sleepless nights, hasn’t been enough. All of the alternative therapies and everything I’ve done to literally turn my life upside down, hasn’t been enough.

I’ll get back to a semblance of equilibrium, I’m sure. For now, everything is upside down again.

Anger and Depression

I was listening to a piece on NPR a few months ago about how Anger and Depression go together.  I’ve heard that a definition of depression is anger turned inward, so this link is not surprising to me.  As an introvert, I’m pretty familiar with the inward turning concept, that’s my normal modus operandi and I’ve a bit of a temper, so anger is not an unfamiliar concept, depression, though, that’s a new one.

I’m aware that there is still a stigma around mental illness, that anyone who relies on medication to manage their pain, mental or otherwise, is viewed differently.  I’ve also heard that cancer patients don’t often tell their medical providers how they are feeling, during or even after treatment.  There is huge pressure to be “fine,” to leave the experience of cancer behind once the active treatment is done.  That leaves so many men and women in a dark place without hope.

Fuck that.

Yep, I just used the “f” word.

I don’t curse often, but this is a subject that I feel rather strongly about.

I’ve been diagnosed with depression and anxiety and I’m taking medication for that since early on in my diagnosis, which occurred in mid-2017.  My normal coping mechanisms weren’t up to the task when I received a TERMINAL diagnosis and I still need help to manage my emotions.  I need help to get out of bed in the morning and I need help to deal with the bone deep anger I feel.  I need help to be able to be present for my children rather than wallowing in a deeply dark place.

My terminal illness is invisible at the moment, at least when I’m wearing regular clothes.  You can see about half of my scars when I wear a bathing suit.  The scars on my legs show where I was cut to accommodate the rods inside my femurs and the screws to hold said rods in place as well as some of the tattooed dots from radiation.  My bathing suits usually hide the scars on my belly from the robot assisted hysterectomy, the oncoplasty reduction where the cancer was removed from my breast, the rest of the tattooed dots from radiation and the two C-section scars.  These scars tell the story of some of the physical affects of my treatment, but they don’t tell the story of the mental and emotional affects.

It’s hard to put into words how difficult a terminal illness is on the psyche.  It’s hard to put into words the ambiguity of continuing to live life and deal with the minutiae of “real life” while dealing with constant pain and scans and the threat of progression and death at any moment.  It’s hard to put into words the affect of watching friends die every day.  It’s hard to put into words how dealing with medical professionals and my insurance company and all the stupidity of the medical system can be infuriatingly complicated.

I can handle most of this most days by compartmentalizing the hard stuff and focusing on what is in front of me.  I also take a good amount of medical marijuana.  Before anyone freaks out that I’m high while driving or taking care of my children, relax.  I am responsible about this.  I take CBD during the day and use THC at night to pleasantly float to sleep.

There are days when I can’t deal.  Literally, can’t.

I don’t feel shame at admitting that I need help, chemical and otherwise.  Seriously, no one is naturally equipped to deal with finding out that death is a heck of a lot closer than one originally thought.

I’ve become accustomed during my life to pushing the bad stuff to the back of my mind and making myself move forward, one step at a time.  I’m actually better at this than I thought; however, being diagnosed with a terminal illness has been a different experience for me.  I’ve had to learn new coping mechanisms and I’ve had to learn to give myself space.

I’m not good at self-care.

I’ve gotten better, but I’m still not very good at it.

Here is my list of the things I’ve utilized to help cope with living while I’m dying, in no particular order:

  1. Yoga.  The combination of physical exertion and the focus on mindfulness, breath, and being present has so many physical and mental health benefits.  If I don’t go to yoga regularly now, I really feel it.
  2. Sleep.  Sleep has really always been a core value of mine, but as a mother and a business owner, sleep started to take a back seat at times.  Now, I consider sleep as part of my medication regimen, it’s an integral part of my self care.
  3. Support.  I’ve dealt with a lot of stress over the years and, frankly, been around a lot of people who I didn’t like and didn’t particularly like me.  These things aren’t healthy, especially on a long term basis.  Now, I focus on being around people who are supportive of me and avoiding situations and people who are toxic.
  4. Medical Intervention.  I see my psychiatrist and pain management doctors regularly.  They help me evaluate where I’m at with my pain and how I’m doing overall, as objectively as possible.  I trust both of these doctors to notice and intervene when necessary.
  5. Family.  I spend a lot of time with people who think I’m amazing.  My family watches me closely and they are quick to notice when there is something bothering me.
  6. Medication.  When I learned I was Stage IV, I started taking anti-depressants.  I’ve taken a few different ones now and experimented with the dosages to get them right.  Right now, I’m taking medication that both helps with my mood and also the hot flashes resulting from my hysterectomy.
  7. Advocacy.  I’m a product of my German genetics and upbringing in the Midwest.  Being useful, helping others, and speaking up when I can makes me feel as though I’m utilizing my diagnosis to make a difference.

What is working right now for me is not what will always work and won’t necessarily work for others.  Perhaps this list and my description will at least spark a conversation for others.  Dealing with the weight of a terminal illness amongst the regular stresses of life cannot be discounted.  If you or anyone you love is suffering in silence, please speak up.  Help is available, but you have to ask for it.

Love and light.