More Unintended Consequences

When last we spoke (Nov 3, 2020) I was awaiting knee surgery and the results of some tests that would determine my next clinical trial.

As I write this, it is January 3rd, the first day since I’ve been home from surgery that I have been fully conscious and alert. The consequences of my decision to have all these joint replacement and random illness all striking at once creating a perfect storm to take me down.

Though I posted a quick note on Facebook Christmas Eve explaining I was suffering from vertigo, I have not made all else public. Not because of any other reason than I have been completely unable to communicate.

First the Knee

Everything went as expected. Surgery was performed on Tuesday, December 8th. I went home on Thursday. Yes, it was slightly more painful, in different ways than the hips, but was manageable on pain meds. I started home PT next day. The knee continues to improve, no pain meds needed. It is still swollen and needs more rehab, but is the least of my current issues.

During my hospital stay I developed tinnitus. Not a big deal, I’ve had low grade bouts of that for years and didn’t think much of it until the first weekend home when I began losing my balance, and sense of space. Dizziness, vomiting, and constant nausea followed. And for fun, a UTI accompanied by incontinence. Party!

I don’t need to give you exact blow by blow but after a week, several consults, doctor visits and various meds I was finally able to tolerate being upright for short periods of time, but only after three hours of slowly prepping for being vertical. I don’t wish vertigo on anyone.

Week Two: and I thought last week was bad

December 21. Big day at MGH, three appointments scheduled. First up, post surgery and it is time to get the staples out.

I managed to get to the office using my walker, though it was a struggle. Knee looked great, then we started talking about the vertigo. I explained that the day before surgery I had a pain in my neck which moved to my shoulders by morning and were super tight. I thought it was just tension since it abruptly went away when they gave me sedation for the nerve block. I didn’t think anything else about it until I saw my PCP about the vertigo.

Ortho doc however was concerned about my neck, and since my next appointment was for a CT, he called down to add it to the scanning orders (I’ll interject to say that nothing has come of this. The scan was inconclusive. The remote possibilities of potential problems are all scary and unlikely. My oncologist recommended we set the issue aside until we settle more pressing matters.)

Back to my ambulating…halfway down the hall vertigo overcame me right where the ortho x-ray escorts are. They grabbed a wheelchair and bought me up to CT. Nothing exciting to report about that. I got wheeled upstairs for the third appointment, my first meeting with the new clinical trial team.

Fucking Monkey Wrenches

I spent the next few hours with my new nurse and clinical care coordinator. I had a mess of lab work, EKG, and the usual vitals. We talked about the expectations for this trial…I just realized I hadn’t told you about the new trial. Duh.

We discovered I have many new mutation, unusual for ER+ tumors. This affords me opportunities to fight the cancer in other ways, and it so happened that a new study had opened addressing one of my mutations. The drug and side effects are similar to my last trial, meaning not only could it be as effective, but that I might tolerate it well also.

Hence, the new team. The doctor was excited, the team was excited, I was excited.

Then both the nurse and coordinator disappeared for a bit. Eventually the nurse returned and we began chatting about my blood work. Everything looked great, we were waiting for one result before I could officially start on the trail.

Dun, Dun, Dun.

The results popped up and she excused herself to talk to the doctor. Grrr.

Awhile later the floor nurse checked in to see how I was. She left the door ajar and minutes later I heard my PA (the BOSS) and oncologist in the hall. I knew it wouldn’t be good news.

Every trial is different. They have requirements for the kinds of test they want like MRI’s and CT’s, and the levels of all kinds of blood tests. This trial has strict requirements for the liver. I flunked the test.

I will remind you, I had to stop my last trial November 13th, which means cancer has been growing unfettered since then, and sadly the tumors have grown big enough in my liver to make me ineligible for this trial.

The doctor really likes this trial for me so rather than pull me from it, it is decided that we need to shrink the growth, quickly. UGH. Of course that means CHEMO. Tonight.

Fine. Great.

That also means bone building shot and its side effects, and all the fun that chemo brings to the table (today was lose my hair day, but ya’ll know I rock a bald head so no biggy).

Chemo is a five minute infusion, two weeks on, one off. Today is week three recovery week and I’m feeling good.

I don’t yet know how long I’ll need to be on this chemo, it depends on how quickly the liver test can get to an acceptable level. We had a bit of good news last week when my lab worked reflected positive changes meaning that the chemo is already working. Then my neutrophils tanked and I needed white cell builders, necessitating a quick trip back in to MGH for an injection of Neulasta and more side effects.

I will be blunt, the last two weeks have SUCKED. Knee surgery, vertigo, tinnitus, nausea, stomach pains, bone pain, neuropathy, chronic fatigue, SOBBING, and then, because all that was not enough, I suddenly started experiencing completely numbness in my left leg. The leg that I am trying to rehab. I can barely drag it around. Why? WHY!!!!!!!!

New tumor on my left hip and growth on previous spinal lesions it the likely culprit.

If the vertigo hadn’t started easing up over these last few days, I might have exited this whole shit show (No, not really but it was bad enough for me to be thinking about just exactly where my line in the sand is).

At this moment I have no idea if this is permanent, if chemo or the new trial will help or if the lesions can be treated with radiation later. More conversation and consultations are ahead on the matter. In the mean time I can still get around albeit unsteadily. And, there is no telling if I’ll suddenly lose my ability to walk or not. This issue is my most worrisome given all I’ve been through so that I could walk again. This little monkey wrench is feeling particularly unfair.

There you have it. I’m spent. I’ll write more when I can, or when I know more. No worries if you don’t hear from me. It’s likely I’m just too damn tired, or brain dead to write.

I know this all sounds precarious, and a bit scary. I’m reminding you and myself, everyday gets a bit better, everyday I’m feeling stronger.

Chemo will sit my ass down next week when the lethargy hits but I’ve ridden this roller coaster before, its side effects are temporary. I’ll be fine.

Happy New Year!

Unanswerable Questions

Hello friends, family and other interested parties.

It’s been a while. Mainly because nothing much had been happening on the cancer front. No news is good news as they say. But that’s all changed this week.

Quick Recap: Tumors are measured and given an aggregate number that reflects negative, positive or no change. Every CT I’ve had over the last few months has shown a “major shift,” meaning I was in the negative numbers. My tumors were shrinking. Yahoo.

If you’ve been here from the beginning you may recall that when I was first diagnosed with metastatic breast cancer (6/2019), the retina specialist broke the news by saying “I have good new and other news.” Which has become the family’s way of comically imparting important information.

Brace yourselves, I have good news and other news.

The good news – I do not have a brain tumor.

The other news – I do have several lesions on my skull inside the dura (the first layer between the skull and brain). There are also a scattering of questionable spots on my liver.

The unanswerable questions are many, but there are general assumptions we can make.

Over the last fourteen weeks I have undergone two, total hip replacements. The right hip, fourteen weeks ago in August, and the left, six weeks ago in October. Both were necessary to my quality of life and I am 100% happy with my decision to have them done. However, there may have been serious consequences as they required my going off my cancer medications for ten days each time.

When I made the decision it was with the full knowledge that I was risking losing control over cancer growth if my medication failed. The problem of course is that I wouldn’t know that until there was cancer growth. And, I would never know if going off the meds were the trigger.

Cancer meds randomly stop working all the time. As I am on three medications, it is also possible that only one of them has stopped working because maddeningly, I still had negative growth in previous tumors even as I had new one develop on my skull.

I am now off all drugs and out of the trial that was at least partially working, and have to start all over, hoping another cocktail of meds will have as much success.

This week, I met with my oncologist to go over my options. I could take the regularly prescribed treatment of approved drugs. I could try chemotherapy (neither of us thought that was a great idea). Or, I could volunteer for another study. There happen to be four I am eligible to join.

I believe in the importance of research and clinical trials, and though being a participant has risks, I am willing to take them. My cancer has no cure, but every step we take, any information gathered, makes it possible for the next women in the cycle to live longer or have a better quality of life than the last. It is why I am still here. It maybe what saves my daughters one day.

It will be a few weeks before I know which study I’ll be participating in because my cancer needs to be retyped and tested for new genetic markers, or mutations. I have PIK3, a mutation that is common in breast, liver and colorectal cancers. That is what the drug palbociclib was treating, one of the three I was taking (you know those annoying Ibrance commercials? “I’m living with metastatic breast cancer…”).

Speaking of retyping, that is one of the other possible causes of my medications failing. If my tumors are no longer ER+ (estrogen positive) then the medications I take that target that feature won’t work.

Speaking of not working, guess what else doesn’t work? My left knee. There was already a plan to undergo a total knee replacement in the spring once the Covid craziness died down, but since I announced I was going off my meds, both daughters, my husband, and my physical therapist all enthusiastically proclaimed it a great time to get my knee replaced.

Sure, sure, on paper it makes sense. Once I start on a new drug trial I will not go off it again, making it likely that I will suffer with the pain and debilitating effects of arthritis in my knee for the rest of my life. My daughters are still home and able to care for me, drive me to app’t and keep me from going stir crazy during the remainder of this pandemic. And in order to get full use of my spankin new hips (which may have cost me a few years of my life) a new knee is a must to keep recovery moving forward. Otherwise, I can’t progress to walking at least a mile, my modest goal for undergoing the surgery.

But seriously??? Another major surgery (scheduler just called, it’s on the books for Dec 8th. I wish it was a week earlier) so soon after having just had two of them fourteen, and six weeks ago??? Okay, it’ll be seventeen and nine by then, but still!

Easy for everyone else to say it’s a great idea when they aren’t the ones getting all drugged up on narcotics, suffering the fun constipating effects, along with dopey, brain fog that comes with it. Having to ask everyone to do nearly everything for you, and feeling like a pest. And I swear, if one more person mentions that knee surgery is more painful than hip surgery, and the recovery is longer and more painful too – I will demonstrate said pain on their ass.

Bluster aside, I am grateful. I had a good run with medications I tolerated with minor side effects for sixteen months and I still have options. That’s a hell of a lot more than many women get.

I’m being treated at what is arguably the best hospital in the nation by the leading researchers in their fields. I have two new hips that work, and are nearly pain free. I had relatively quick recoveries with the help of a team of very kind home care nurses, and physical therapists. Not to mention my devoted family and cadre of faithful friends.

I’ll post more when I know more.

Don’t let the unanswerable question in life get you down or drive you crazy. That’s what politics is for.

Love to all,

Lynne

Another Wicked Good Report: Yawn…

Is this getting boring? OF COURSE NOT!!! Who could get tired of hearing their health is improving? I can’t imagine ever taking my progress for granted. I’m beyond grateful for the people and drugs that are extending my life expectancy.

Two weeks ago I underwent another round of CT’s and a brain MRI…nothing in there of course. Can’t tell you how many times I heard that joke last week.

The CT showed more decreases, and/or stability in the remaining tumors-those are mostly the bone lesions. The decreases mostly soft tissue, like the lungs, and liver.

In other news, my clinical coordinator told me the trial sponsor has decided to forgo the second phase of the study, and jump right to phase three. That is spectacular news. It means patients in the first phase of the study (ME!) are doing so well they are willing to take the financial risk of funding the double blind study.

And guess what? The arm they decided has the best potential for success is the one I am in! FYI: an arm is the combination of drugs being tested. I’m in the phase one study of the drug DGC-0077 which has 6 arms. I am in arm E, taking a combination of palbociclib, fulvestrant, and the GDC-0077.

That is an incredible boost of confidence in the particular drug combination I am taking. It’s especially exciting to my team since I happen to be the only one in this arm at MGH. My team will also be taking part in the phase three trial.

Another milestone, I have reached the 6-month mark which means I get to drop down to one clinic visit a month. I’ll still have testing (CT, MRI) every other month, but no more lab/nurse/doctor visit on day 15.

Other than a few annoying side effects, like my fingernails breaking off at the nail bed…ouch, not much else is going on. My hair still thins about once a month but I don’t seem to be losing all of it. The mouth sores are under control so long as I don’t indulge in things overly acidic, or spicy. My sense of taste comes and goes which can be disheartening but is tolerable.

What’s tolerable is way of life on sooo many levels these days. But I’ll gladly take tolerable for another ten, fifteen years at least.

Happy Valentine’s Day

Love you all.


I’ve Been Holding Out

Last week I had a CT but didn’t get the results until today. However, I’ve been holding out on you. I also visited my eye doctor.

With tears in her eyes she showed us (Jen and I) the scans. No fluid, no cancer. Whoa!

It was hard to not extrapolate that to mean the remaining cancer could have been similarly affected. It was hard to not tell everyone the good news, but I didn’t want to have to temper that a week later with a more sobering report.

NO SUCH PROBLEM!!!

My oncologist’s exact words today were “I couldn’t be any happier with the results.”

According to their metrics, the regression was 1.3% away from being considered a “major” change. This seemed to be slightly unexpected, and very much celebrated by the team.

They will never tell you what outcomes they expect other than generalities and ranges because everyone is different. Nor will they say what more I can surmise from this progress. But, they did confess, it wouldn’t be unrealistic for me to see a continuation of this regression.

I’ll take it.

The crappy stuff, the incredibly awful mouth sores, will be treated with a steroid rinse. It’ll be a while before I can tell if that helps. Of course that cure has its own side effect too-candida. Not great, but a yeast infection in my mouth versus open sores, is a no brainer.

Overall, the last few weeks have been going very well. I’ve had energy and been able to do everything I wanted with minimal side-effect interference.

It was the mouth sore that finally put a damper on my appetite and sense of taste. Only the unpredictable diarrhea is the true buzz kill.

As will always be the case, the end of week two/beginning of week three in the cycle will bring a drop in my WBC, platelets, and energy. Today is day twenty two so my levels should start to go up over the next week.

And so you know I’m not all talk, once I got permission, I got my flu shot.

Next CT is the day before Thanksgiving. I have a lot to be thankful for this year. Besides the obvious pharmaceuticals, it is you all that I’m most grateful for.

You have kept me laughing, cried with me, hugged me, worried about me, made terrible jokes, and spent many hours driving me to and fro.

I love you all.

Lynne

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