But, I Feel Better!

Darn, I was supposed to start cycle two today but my white blood cell count and neutrophils are too low, though they are slightly up from last week. Protocol, however is the boss here so I’ll be off the palbociclib for another week (a cycle is 4 weeks, palbo is 3 weeks on, one week off, GDC is everyday all 4 weeks, and Fulvestrant is 1x a month on 1st day of cycle).

The concern now is this screws up the timing of the next cycle and those that follow. But, that isn’t my problem to solve so while the research staff figures out how to rectify the situation, and juggles my appointment schedule, I shall regale you with tales of the last few weeks.

Side-Effects Strike Back

Side-effects have come to plague me since I last wrote. Some worse than others. Intestinal distress has struck (without warning…fun) but we seem to have found a measure of control between the Imodium and not eating too much at once. That’s pretty easy since I don’t have much of an appetite anyway.

A mouth sore that had been torturing me for two weeks has completely healed. I lost my sense of taste, but that has returned to about 70% since being off the palbo for the last week. I’m guessing that will be a permanent two-weeks on, two weeks off kind of thing. I can live with that. The idea that I wouldn’t be able to taste anything the rest of my life was a tough one, having it even partial back is a big relief.

My blood sugar is normal, no worries there. A testament that anyone with prediabetes or diabetes would be greatly helped by adopting a Keto Diet. It has saved me from suffering hypoglycemia, a side-effect of the GDC and having to take yet another drug. I’ll be posting about my own experience with this new lifestyle later.

My hair can’t decide if it’s falling out or not. One week it seems to be dropping out at twice the rate as it typically does, then returns to normal. Time will tell. I don’t care much, I look great bald.

Between the mouth sore, intermittent diarrhea and loss of appetite I haven’t quite worked out what to eat on keto when I don’t feel well. Anyone with ideas for that, I’m all ears. I can only eat so much tuna salad and scrambled eggs.

The Facts of Life

LOL, are we in TMI territory yet? Oh well, you take the good, you take the bad here.

Here’s the good. Declan in a kilt! Oh my heart. He was so adorably handsome. The whole wedding party looked terrific, especially, Kayla and Chris (Declan’s parents, the bride and groom). We all agreed it was one of the best wedding we’ve ever been too. A picture perfect day all around.

The venue was lovely, the hotel was laid out perfectly for hanging out and greeting people in the lobby and lounge. The weather cooperated. Eva and Lillian were in charge of Declan and his 17mth-old sister Keira. Paul and I got to hang out with them quite a bit too.

We’ve know the Danheys, the bride’s family, since we moved in next door to them 24 years ago, and have been fortunate enough to be included in the major celebrations throughout the years. All of which means we are very familiar, friendly and in love with the extend family. And seeing that I’ve been caring for Declan for the last 6 years, I’ve gotten to know and feel close to the Murrays, Chris’s family, as well. All of which made the weekend feel like one big family celebration. As it should be.

Baby, Baby, Baby

This week I got to see my friend Sara when she came down to fill out her baby registry. I am keeping busy planning her baby shower, making decor, and menu planning, my forte, and I’m grateful for such a happy occasion to keep me distracted. And to celebrate and honor Sara, Ben and their soon to be little man.

Write This Way

NaNoWriMo (National Novel Writing Month) is nearing. I “won” 2010-2016, participated in 2017 and 2018, making this my tenth year. I’m not sure if I’m writing something new or reworking one of the previous years work. But I will be hosting one night a week here at home, and as usual, hosting the Kick-Off Party, The All Night-All Write, and TGIO and Reading. Whew!

Truthfully, I’m having a hard time caring about my writing. Not to get maudlin on you, but I’m struggling to find it relevant. I have promised to finish the novels I have started so they can at least be read by the few who care to. It’s the least I can do I guess after spending so much time being a “writer,” the last 10 years.

Misconceptions

Metastatic breast cancer is incurable, thought treatable. I will be having a CT at the beginning of Oct. This will be the first indication as to whether these drugs are working to stop the cancer’s growth. That is why it is so important to manage the side-effects. The cancer itself isn’t the problem presently.

I’m sure I wrote about this before but I want to clear up something. One question cropped up several times over the last week, “How long will you be on these meds?” The answer is “Forever or until they stop working.”

More often than not it is the side-effects that people find intolerable, physically and mentally and in despair give up on treatment. My research team tries to save me from going down that path, and keep me as healthy as I can be. I truly appreciate their attention and concern.

I can easily see how depressing life becomes when you aren’t able to enjoy the things you normal take for granted (LOL, words to the wise…be grateful for trauma free eating and pooping).

Nothing to See Here

Nothing dramatic happening otherwise, at least not to me. I’ve had my sister’s two flooffy pups this week while she vacations in Paris and Nice. Strangely enough, that is also where the honeymooners have been this week.

I love you all. Thank you for reading. Thank you for responding, writing, calling, sending me gifts. It is humbling to have so many people hoping, praying and wishing me well. Your kindness is deeply meaningful to me. Life is Good.

So Far, So Good

My apologies for the delayed update. The longer I go between them the longer they get! My last post, August 3rd, seems forever ago. I’ve already had eight doses of my new drug regime since then…let’s catch you all up.

There was a little confusion around the first appointment on August 14th. I hadn’t been well briefed on what would be transpiring other than I was starting my meds, and I have to take some responsibility for that since I never ask questions.

Upon arriving my coordinator came to fetch us since she’d moved my app’t to The Henri and Belinda Termeer Center for Targeted Therapies. On the walk down she was chatting away when the phrase “…since you’ll be here all day,” caused both Satin and I to gasp…”What do you mean all day?”

Poor Satin, my escort for Wednesday’s app’t, ended up toiling away at MGH for eight hours with me. Thank goodness she was there to entertain me though. I would have been a lot less easy going about it had she not been present to keep me smiling and laughing.

Once we had that little detail ironed out things moved along to meetings with my oncologist’s PA, my research RN, and the afore mentioned coordinator. I had several ECG, and enough blood drawn to fuel my own bank.

The lengthy app’t was due to a four hour window required between labs. Fortunately, it’s only the 1st dose that requires it. To while away the hours Satin and I visited the roof top garden, which is lovely. The view is out across the Charles River Basin and takes in the Boston skyline…stunning.

To Make a Long Story Longer

I discussed the drugs in my last post, what the intended effect is, and the possible side-effects, so I won’t reiterate those. Nothing much to report, so far so good. My blood work yesterday was nearly normal, just a slight drop in white blood cell count, though my blood sugar went to 133 – that leads to another story I’ll get to in minute.

They seemed surprised my blood sugar was that high. I eat a Keto diet and we expected it would keep my blood sugar down. That, however, wasn’t the first surprise we had that day or the last.

Just When I Thought I Had It All Together

I was feeling all confident and spunky, intending to drive myself in to Boston for the first time since I started treatment. I was about to depart, and the last thing I do before leaving, is pack my drugs in its ice pack, zip it closed, and grab my tote bag.

I head out to the garage, get in, and the brake won’t depress, and the engine won’t turn over, and the lights–I’ve never seen before–pop on.

Are you fucking kidding me?

SOS call to Satin, SOS call to Paul. Satin wins? She rushes over to get me. We arrive in Boston a half an hour late. My coordinator assures me it’s no big deal. I am ordered to relax. Grumble, I hate being late and I hate dragging Satin away from her niece and nephew day (and yes I know you are happy to do it… thank you, I love you).

Once settled into my room with the staff, I regale my PA, RN and Satin with last weeks hi-jinx.

Oh. No. You. Don’t.

The previous week Donna had suggest I try Excedrin for the migraines I’ve been plagued with since May. Lillian and I pick some up next morning, and after that days app’t we settled in at home with lunch. I read the box aloud to her, scoffing at the ingredients.

“Acetaminophen, oh that never works for me. Caffeine, that’s the same amount in my tea. Ah, aspirin. I haven’t had that in years. Maybe that will work?”

Feeling skeptically hopeful, I take two in hand and, bottoms up!

Two hours later, I’m sorting laundry, and I realize – I do not have a headache.

It’s a miracle. Not only do I not have a headache, I don’t have any of the lingering aches and stabbing pains that I have relentlessly experienced since May.

I marvel at this new turn of events. Bless Donna, she is a genius, I will never doubt her again. Then, mid-detergent dump, I pause…Hmm, am I peeing?

Why yes, yes, I am. (No worries though ladies. If you have not tried Icon undies for bladder leakage or Thinx period panties I whole-heartedly recommend them).

My lack of bladder leakage fear aside…what fresh hell is this?

This is not on the list of side effects for ANY of the drugs I am taking! But, I do have a little trouble with caffeine and urgency.

OH. NO. YOU. DON’T.

Life? I hardly think that curing my migraines is a fair exchange for the loss of bladder control. In fact, given everything else you’ve thrown at me, this seems patently unfair. This is totally unacceptable.

No worries, it ended there. I haven’t had any problems since then.

That is the story I related to the ladies. I had them rolling. It was very funny. Donna couldn’t wait to tell Dr. Juric just so she could hear his laugh (he’s a hearty laugher). She asked if I’d take the Excedrin again. Yes, but only if I’m wearing my Icon undies.

I like these people a lot. Which is good seeing as how I might be stuck with them for the rest of my life.

Who Left That There?

Satin and I departed, leaving behind an air of mirth. We head to Medford for lunch at Tenoch, a Mexican place. It was delicious. We decide to get some work done at Battle Ground.

While I am sitting here yesterday (as I am now as I write this) I am thinking of earlier, and what a coincidence it was that my car was dead and I had to go into the house where I found my drug bag sitting on the counter.

What? I know! I said the last thing I did was zip the bag, grab my tote, and leave, but as I discovered as I waited for Satin to arrive, I had not put the ice bag in the tote. Sigh. What the hell is wrong with me (a rhetorical question at this point)?

Not So Fast

I was here yesterday at Battle Ground, recalling that incident when a fricken light bulb went off over my head. The last thing I did was take an Ibuprofen.

Ohhhh, Noooo!!!

Do you know what you do when you take Ibuprofen? You eat something. I had 6oz of almond/cashew milk.

Ohhhh, Noooo!!!

What have you already learned about my day? My blood sugar was a bit higher than expected…because it’s supposed to be a fasting blood test you dope. Guess what I did last week too? Ate before my labs. What is wrong with me??? Yaya, cancer, stress, whatever.

I have been fasting 5 days a week since April. What are the effing odds the one day of the week I need to have been fasting that I have eaten something? Two weeks in a row?

For crying out loud. Now, I have to email them and confess my sins.

Coordinator laughs at me, and once again orders me not to stress. But still, screwing things up is getting tiresome.

Tying Up The Loose Ends

My car battery, was just old, dead and unrecharable, AAA replaced it. NBD.

The blood sugar wasn’t high enough to trigger a protocol response. PA decided to wait and see where it settles…I promise I will be fasting next week so it should be lower.

One more thing, I didn’t reveal this widely because I was having a hard time processing it, and I didn’t want anyone to be overly concerned.

Nothing has changed. My treatment is still the same, my expectations for positive results are still the same. The only thing different is a more accurate count and placement of the tumors.

The CT I had August 2nd revealed about twice as many tumors as we previously been aware of. Nothing was done incorrectly, each test is unique and has different abilities to see the tumors. I wasn’t surprised by the results since the previous reports alluded to other tumors. But I’m human, it was scary to read I have twenty-six+ tumors rather than the thirteen+ we’d been briefed on.

As I said, this changes nothing. All the tumors are being treated by my drug regime. Overall, I feel pretty darn good. I might be experience a slight change in the taste of food, and a dry mouth, jury is out. It’s hard to tell sometimes if what is occurring is a side effect or the Mexican food I ate for lunch.

My spine seems extra achy today, but I didn’t sleep well last night. Those of you who live around here likely experienced the acrid smoke from the N. Andover fire. It kept Paul and I up all night after the smoke settled right over our neighborhood,

I think that’s enough for now. I will try to be better about updating so you don’t end up reading another novella length post.

Next week I have my second injection of Fulvestrant, an eye app’t, and two days of lab work. Best of all though is Kayla and Chris’s wedding is Labor Day weekend and Declan will be wearing a kilt! I’m sure we’ll all die from his adorableness.

Love to all.

Uncomfortably Numb

Last week, July 26th, I had an appointment with my medical oncologist, Dr Juric. We made the final decision that I would participate in the clinical trial. The papers were signed and this Friday I completed the preliminary testing needed to get approval from the drug company.

Tests included a urinalysis, blood work, a CT, and an eye examine. They sent off the biopsy slides to Belgium, where the parent company of the study is, and now we wait. Hoping this will be resolved by Friday 9th and I can start on the meds (two pills, one injection).

We also talked about the first round results from my biopsy. It turns out I have at least four mutations/alterations, none of which affect my treatment choice. The amplification is medium on three of them, meaning none cause me concern about postponing treatment while all the paper work and tests for the study are processed. If PIK3CA E52K had a higher amplification I would have forgone the study and started on a drug targeted to that mutation. The other two, FGFR1 and MYC don’t have approved targeted drugs yet though they have clinical trials. The fourth has an unknown significance.

We also discussed the side-effects of the triple whammy drugs. The first two are standard treatment which I would be getting anyway, Ibrance and fulvestrant.

Fulvestrant is a selective estrogen receptor degrader or downregulator (SERD) is a type of drug which binds to the estrogen receptor (ER) and, in the process of doing so, causes the ER to be degraded and thus downregulated.[1] They are used to treat estrogen receptor-sensitive or progesterone receptor-sensitive breast cancer, along with older classes of drugs like selective estrogen receptor modulators (SERMs) and aromatase inhibitors.[1] The most common side effects (occurring in more than 10% of people) include nausea, injection site reactions, weakness, and elevated transaminases.

Ibrance is a selective inhibitor of the cyclin-dependent kinases CDK4 and CDK6.[1][2] Palbociclib was the first CDK4/6 inhibitor to be approved as a cancer therapy.[3] In the G1 phase of the cell cyclemammalian cells must pass a checkpoint, known as the restriction point “R”, in order to complete the cell cycle and divide. CDK4 and CDK6 complex with cyclin D drive the phosphorylation of the retinoblastoma protein, Rb, which allows the cell to pass R and commit to division.[4] Regulation of one or more proteins involved in this checkpoint is lost in many cancers. However, by inhibiting CDK4/6, palbociclib ensures that the cyclin D-CDK4/6 complex cannot aid in phosphorylating Rb. This prevents the cell from passing R and exiting G1, and in turn from proceeding through the cell cycle.[4]

A majority of patients taking palbociclib experience neutropenia, a condition where a patient has an abnormally low number of neutrophils. This side effect impacts the immune system, and is thus likely responsible for the second most common side effect, infection.[13]

You will be hearing more about that as my paranoia and cold season approaches. I’m thinking of installing one of those UV sterilizing lights on the front door.

The third drug is GDC 0077 which inhibits or halts the growth of tumors. Here is the actual study, I’m in ARM E.

PI3K inhibitor GDC0077 binds to and inhibits various members of the PI3K family, including activating mutations in the catalytic alpha isoform PIK3CA. PI3K inhibition prevents the activation of the PI3K-mediated signaling pathway and results in the inhibition of growth and survival of PI3K-overexpressing tumor cells. Dysregulation of the PI3K signaling pathway is frequently associated with tumorigenesis and tumor resistance to a variety of antineoplastic agents and radiotherapy. PIK3CA, which encodes the p110-alpha catalytic subunit of the class I PI3K, is frequently mutated in a variety of cancer cell types and plays a key role in cancer cell growth and invasion. 

Well, that was a lot of technical stuff.

I mentioned Friday that my entire left side had gone numb. No worries is didn’t last long, about three hours off and on. Then once, very briefly today after I’d been active much of the day. I believe it was the results of my laying on my side and aggravating the radiation site. Which, while very much improved since earlier in the week, is still uncomfortable, causing heartburn and restricting certain movements.

I did have a good week overall, since Lillian and I were was able to spend two days with little man. And Lillian and I have also been able to spend a lot of time together before she goes back to school in a few weeks.

Senior year, WOOT!

Eva has moved into an apartment in Arlington, for now. She’s exploring grad school options which is exciting.

No app’t till Friday, yay! Hopefully, I’ll have Monday and Thursday with Declan. Lillian and Paul are driving up to Vermont on Friday to pick up furniture she is inheriting from Zoe and Neil. And Paul is slowly but surely making his way through the front and upstairs hall repair/repaint job.

Till the next update…love you all.

Info is mainly from wiki and cancer.gov

Panic at the Disco

Nothing like causing a panic to bring you down to earth.

I haven’t seen Declan since the day we spent 2 hours (uncomplaining) at the eye doctor, and I was really looking forward to our visit today.

It’s beautiful out. I woke up feeling relatively good despite the lingering pain in my side from radiation. I didn’t need an oxycontin over night or this morning to function (text edit keeps changing oxycontin to oxytocin-please note I know the difference between a hormone and a narcotic). And I have no pain from yesterday’s biopsy.

All is well. Declan arrives all smiles and is delighted by his new batch of dinosaurs, and one Godzilla, my thank you gift. The first thing he says to me is “I’m glad you aren’t dead. I don’t want you to die.”

Me either, little man.

He and I had ordered 1000 pipe cleaners at the beginning of summer. We watch video instructions and follow along but you know I am the one who gets stuck making all the things he wants. This morning I had to improvise as there was no Youtube video instruction for an American flag. We/I managed to replicate one well enough…anything for my Prince Charming.

Then he requested pancakes. Easy peasy. We make, we eat. He runs in and pops the tv on while I start to clean up.

OH DEAR GOD WHAT IS HAPPENING TO ME???

I went dead white. Got light headed, thought my intestines were going to escape my body, while my stomach threatened to abandon ship. I will note, that I did not actually, at any time, get sick. I just felt like I was near death for fifteen minutes. It wasn’t until my face went numb, then my hands went numb, that I started to panic.

When I broke out in a cold sweat and everything went buzzy, I was afraid I’d faint…can I panic now? Not for myself, but I didn’t want to scare Declan. I managed to walk into the family room and tell him I wasn’t feeling well and to watch tv for a bit. I reminded him that Annette is across the street if he needed her. I grab my phone and my hands were shaking so bad I briefly thought that I should go get Annette. Then I texted an SOS to Chris and Kayla. “Come quick, I can’t feel my face,” is not the message you want from the nanny.

Declan is smart and capable. I went back in, laid on the couch and told him I might faint. He said, quite confidently, “That’s okay, I’ll ask Alexa what I need to do for someone who faints.” His instinct to take care of me makes me cry.

So now Chris and Kayla are both on their way. Kayla ratted me out let to Paul know I wasn’t well and he called concerned.

And all I’m thinking is “Fuck. Is this my life now?”

I get a stomach ache and set off a panic at the disco.

I know how annoying it is when I say I’m sorry for a situation not of my own making, but damn it, I’m sorry I’m putting everyone through this. Heck, I’m sorry I’m going through it. It doesn’t mean I don’t appreciate your worry, I do. It’s pure love and I’m grateful for it.

We’re all scared and worried, there is no way to not be. The truth is this is a serious situation, with serious repercussions. The treatments are not fun. Radiation and drugs cause as many problems as they solve. And as hopeful, and as determined as I am to see this though the long-term, the future is unknowable.

It’s the unpredictableness of it all that is most challenging. We have no idea which side effects will strike me, how severely or mildly, or how short or long lasting they’ll be.

It truly is a life that can only be lived one day a time.

However, I believe in making plans for the future, because they help one see past the current situation. Giving yourself things to look forward to, and to live for, can make a big difference in how you weather the storms chronic illness throws at you.

Lillian will be home Sunday, Tracey moves into her new house Aug 3rd, Kayla’s bridal shower is the 4th, her and Chris’s wedding is Sept 1st, Oct 3rd I’m hosting Sara’s baby shower, Oct 16th is our 26th wedding anniversary, I’m redecorating Eva’s and Lillian’s bedrooms (I seem to have a lot more company now).

I have a lot to look forward to.

I Feel Love, Donna Summer

Five and Done

It has been duly noted that not being updated is making some of you anxious. If you are ever in need of reassurance or just need to hear my lovely voice, for crying out loud, call me. You are not bothering me. I assure you, if I don’t want to talk I will not answer the phone.

After a lovely weekend with Sara and the Indoe family, I had a nice quiet Monday, with my 4th dose of radiation, and concluded that treatment with the 5th dose today. 

I was doing great until yesterday afternoon when I suddenly felt like I’d gone a few rounds with Muhammed Ali pounding the crap out of my left side.

The radiation, like many cancer treatments, tends to make one worse before it makes you better. And I was feeling much worse for wear when I woke this morning.

I popped an eight-hundred mils of ibuprofen, and a few hours later off I went to my last app’t. While I was there I asked to see the doctor since I was becoming apprehensive about my biopsy scheduled for Wednesday (we have to be in Boston at 6:30am) after being in considerable pain this morning, I feared tomorrow would be unbearable. 

Oxycontin to the rescue. I’m guessing that will be a recurring theme. 

Tomorrow being biopsy day means Paul and I will spend a lovely morning together. We do so enjoy this alone time. At least it is early enough to avoid rush hour traffic. 

Then at long last I have Declan Thursday! I haven’t seen him since the morning he spent with me at the ophthalmologist…geez, was that really only 4 weeks ago?…and I can’t imagine what he is thinking happened to me. 

I am well supplied with a new group of Dinos for the Dino Compound we started out back, and his new crafting medium, pipe cleaners. Which really means him saying “I’m going to make a turtle,” and then handing me everything. 

I’ll update you after my app’t with Dr Juric on Friday.  I should be starting the meds and learn more about the clinical trial, though I don’t think my participation can be determined until the biopsy results are in.