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. 

Radiation Station

I met Dr. Jim McIntrye on Tuesday. He’s my new radiologist. Luckily for me I don’t have to go to Boston for my treatments since they have a lovely cancer center over in Danvers.

Jim is a chatty fellow. I learned more about his family in one meeting than I’ve ever learned about doctors I’ve know for decades. He’s also a hugger. Which is okay with me, huggers live longer and that is our goal.

Today I had my first dose. One down, four to go. Annoyingly they are at one o’clock in the afternoon. Cancer is very inconvenient.

A lovely young women reached out to me (I signed up to be notified of pertinent clinical trials) to participate in a fatigue study of patients taking Ibrance. It’s a seven week study that takes place over seven months that consists of questionnaires, wearing a special sleep watch and a Fitbit. Easy peasy, and they pay you small stipend, and I get to keep the Fitbit. This cancer thing is really paying off!

Dr Juric called to tell me they decided to biopsy the lymph node under my collar bone. Soft tissue is a much better material to type than bone. It shows up well on the PET scan even though they can’t feel it. Waiting for that app’t to get settled. And he said the insurance company had approved my taking Ibrance. I’ll see him end of next week and finally get going on the drugs. Woohoo!

I’ve had a migraine off and on for three days now. It seems related to the lesion on T8 causing me pain, the one they are radiating. It can take weeks for the full effects of radiation to take effect. Let’s hope I don’t put an ice pick through my temple before then.

I started driving again since the fluid has decreased a bit in my right eye. The distortion isn’t making me queasy anymore. I’m not sure I want to drive to Boston myself yet but the local roads I can drive in my sleep were no problem. I assure you my vision is clear and I’m not endangering myself or anyone else, it was merely a motion sickness issue.

Thank you all for messages of support and love. It means more to me than I could possible express. Huh, you shut me up. Keep up the good work.

The Cancer Chronicle

Seriously, after having a double mastectomy you start feeling a little secure thinking you are finally free and clear. Even though that surgery was at the behest of a recurrence of the breast cancer I’d been diagnosed with six years previously, I truly was surprised when the ophthalmologist broke the news to us – you have cancer in your eyes.

I’ll recap for those who haven’t read the post on Facebook. The rest of you feel free to skip ahead…

July 11, 2019 – edited for brevity.

The third week of May I began suffering terrible migraines and had a shadow in my right eye. I ended up at the retina specialist thinking I had a torn retina. After a full day of angioplasty, ultrasound and many many photos, it turns out I have lesions in both of my eyes. Tiny little tumors, specifically, metastatic breast cancer.

An MRI and a PET scan later reveal many (13?) small lesions (cancer) on bones in my shoulders, in lymph nodes under my collar bone and breast bone, on four vertebrae, and on my pelvis and femur, besides the lesions in both my eyes.

I am fortunate in that I have the best medical institutions at my disposal. I am now, thanks to Jen, under the care of a team of doctors at Mass General Hospital.

Do not believe the appalling statistics concerning MBC. I am not a statistic and they do not necessarily relate to me, or my prognosis. Please read Jay Gould’s essay “The Median Isn’t the Message,” which sums up my attitude on that subject.

No worries, I’m not going anywhere just yet.

July 15, 2019

That catches you up to this weekend’s turn of events. I began experiencing a constricting ball of pressure in my mid-back. After exploring the usually litany of ailments I suffer from, I came to the conclusion that the pain must be from one of the tumors.

Today’s visit with my radiology oncologist, Dr. Rachel Jimenez, confirmed as much. She has arranged for me to have a short course of radiation, five doses. I’ll be going to MGH Danvers, thankfully avoiding the drive to Boston for those six visits.

My medical oncologist, Dr. Dejan Juric wants to start meds asap. We are awaiting blood biopsy results. The clinical trial drug will have to wait til I have bone biopsy.

I’m not sure if it is being put off until I have the radiation or not, but we are still awaiting a biopsy app’t. They will be going in to my hip for that one. They need to type my tumor (previously ER+, HER2-) in case it has changed/mutated and they need to do a further study for a new receptor panel.

The two drugs I know I’ll be taking are Fulvestrant (Faslodex) which is a medication that blocks and damages estrogen receptors that is sometimes used in the treatment of metastatic breast cancer. And CDK 4/6 inhibitor palbociclib (Ibrance). I’ll tell you about the third clinical trial drug when I find out if I can take it. I’ll write more about the drugs when I start them.

I also have an app’t with MGH’s oncology ophthalmologist to check in and get him on my team. For now, I don’t need any other treatment but the hormone regime for my eyes.

Basically, I have an incurable disease that we’ll treat as a chronic illness. As each symptom appears, it will be evaluated and treated. Currently, I have breast cancer tumors that will be treated with a cocktail of drugs that could put me in to remission, or partial remission or in the least, halts the progression. The radiation will kill the lesion causing me pain.

Then we wait.


CBD Oil and the Keto Diet Gave Me Control Over My Life

I’m sharing my story of how CBD oil gave me control over my life with the caveat that it is only my experience, and like those who follow a Keto Diet, everyone has different results and success. It is not for everyone. Do your own research. 

My path to living on the Keto Diet started in January 2019 when in an effort to take the edge off severe pain from arthritis in my left knee, and right hip, I began taking CBD oil. 

I did a lot of research first. I love research, and I am somewhat of a skeptic when it comes to alternative medicine. CBD oil, while still needing more scientific study, has enough information available to intrigue me. Also, a few very trusted friends were finding success with it, and of course it has many studies as a complimentary therapy for chemotherapy. Though I am a two-time cancer survivor, I did not utilize cannabis during treatment.

I specifically did not want CBD with THC (the psychoactive ingredient that gives you the high) as I have had negative experiences smoking pot as a teen. While vaping is the most effective mode of absorption, as a former smoker I found that unappealing therefore I started with an isolate tincture you apply under the tongue.

My expectations were only that it might help with pain. I began with 10mg, and over a week settled on 25 mg twice a day. 

On the evening of day three, I fell into a deep sleep, a rarity for me. Typically it takes me hours and then I sleep no more than 2 hours at a time, usually waking 3-4 times a night.

For the majority of my adult life, I’ve gone to bed every night full of recriminations for what I did wrong or failed to accomplish during the day. It was an insidious and relentless pattern of negative self-talk. In the morning, I would wake disappointed albeit momentarily, that I was still here. I assure you that I am not suicidal, I am actually quite a happy person, and yet, this low grade depression has been ever present shadow.

Day four, day five, I went right to sleep each night without the usual litany, and I rose without those few minutes of regret. Day six, I made note of the change with wonder. Is the CBD affecting my mood? While relief from anxiety is a listed effect, I was not expecting it. Though I was disappointed I was not experiencing any pain relief, this change in demeanor was exciting.

During week two I noticed a remarkable decrease in my appetite, and in my ability to control what I ate, and when. Again, I was not expecting this. With this new found control I began to think that losing weight might be possible.

While I’ve always been heavy, but since experiencing stomach issues ten years ago, my weight had crept up to severely obese. Along with that weight gain, came two bouts of cancer, a double mastectomy, and deteriorating joints. I was struggling with my self-esteem and becoming isolated, not participating fully in life.

Keto came to the forefront in my research, as did IF (intermittent fasting). I started IF naturally, just skipping breakfast. No real plan around it. I lost a few pounds over the next two months. The reality that I could trust myself to not eat what I didn’t want, began to sink in, and I decided to commit to a keto lifestyle.

In an effort to avoid the dreaded keto flu I began to gradually cut out sugar and all carbs. Then the Noro virus ran through my household and tried to kill me. The recovery period  prompted me to end my lifelong addiction to sugar, and dependency on food as a reward, or solace. That was April 1st 2019 and I haven’t looked back. 

Addendum: Life is a cruel bitch sometimes. I began doing yoga 6 days a week. I’d lost 25 pounds, and felt better than I had in ten years. Then I began to have migraines. Well, you can read the rest of the story here. You just never know what life has in store for you.

Written, Not Published…Until Now

Long time no see.

Over the last two years I have composed impassioned pleas that decry the lack of justice, and have railed against the rampant ignorance of our leaders. Not that you would know. I’ve written, not published. 

Once again, I’ve shown up to write about an issue that has outraged me to the point of disbelief, but I am stopped in my tracks by the list of drafts that have never seen the light of day.  

I hadn’t realized I’d gone dark. It wasn’t a conscious decision. I have been here, written nearly a dozen posts or so – on topics you could easily guess by picking any event that has made headlines since, well…

80 Dead in France”  July 14, 2016.

That was my last post. What used to be a satisfactory end to my rampage – hitting the publish button – no longer sufficed. Nothing comes from screaming into the wind. Or does it?

Silence is Not Golden

Damn. You know that feeling when you’ve said something important that is supposed to have meaning to you? 

“Shouting into the wind” means to complain pointlessly, and posting my outrage had begun to feel just that, pointless. But, as in the immortal words of Patsy Cline, “I was sooooo wrong, for sooooo long…” 

I was wrong to stop posting.

Though writing holds a certain cathartic release, it isn’t very satisfying if no one reads it. How could anyone read it if I didn’t publish it? The solution to stop feeling like I’m shouting into the wind isn’t to shut up. 

“Anything worth shouting about is worth shouting into the wind.” Seth Godin

The solution is to give it purpose beyond my own construction of it. I have to force myself to put it out there – into the universe. Scream louder. 

But…People

The world is fraught with people who will try to shut you up no matter what you are talking about. Contrariness, just for the sake of it, is the new black. Writing about politicized subjects that are rife with emotion can invite responses you might not be ready for. 

Hell, I pissed someone off on a foodie site just asking them to be nice. What happens when I point out they’re racist, privileged, assholes? White fragility makes it difficult to confront a lot of what is wrong with our society. But, certainly not more difficult than it is to live under the oppressive systemic racism in America. I can take a few assholes disagreeing with me.

Which leaves me with the question who is going to listen to that message? The people who already agree with me? 

Will those apparently unaware of their assholiness stop spewing that shit just because I wish them to be woke to the truth of it. Why would they even be reading what I have to say? Is that who I’m trying to reach?

I wonder too, can the same be said about me? Am I just being an asshole screaming into the wind? Contrary villain to their racist values?

Opinion is Not Fact

I’m nothing, if not opinionated, but I conceded long ago – to my credit – that my opinions are not written in stone, they aren’t facts. I learn from my mistakes, I expect some of you might to. That’s what I’m aiming for.

When it comes to the rights of all, I intend to be tenacious. There is no give on this point. 

I wish I wasn’t such a hammer but subtly is an art I am unaccustomed to and ill suited for. Try as I might – even walking away from publishing –  the intensity of my feelings on the subject have not changed. I’m not being bombastic for the sake of it. This shit is important.

Reaching out to white people who may read my words and stop to consider their racial bias and white privilege, is worth every second I spend doing it. 

While my writing is not unbiased, I aim for fair-minded in the pursuit of justice for all. My raging against the current circumstances we find our country in is a necessary evil in confronting the source of those injustices. 

While I may not reach the huddled masses surrounding POTUS, I might reach you. I hope you might ponder further upon your privilege. If you do that, you might change your behavior, or notice when it effects people of color. Even better, notice when people of color are being restrained by the privilege of other white people, and call it out. Because once you notice it, once you see it for yourself, it’s hard to turn your back to it.

Maybe then you will notice when our policies are restrictive, when they impinging on personal rights and responsibilities, when they reflect, not the broad spectrum of our citizens, but that of one supremely powerful, and corrupt sector. Because, once you see it for yourself, you can’t unsee it and remain silent.

A Battle of Wills

And here we are, at the meat of it. Politicians have become master manipulators, easily swaying the vulnerable with the illusion of control and righteousness. By using citizen’s religiosity, their fears, and desperation, politicians have mined uneducated and vulnerable citizens for votes. Oh, but that’s not you? 

Go ahead, explain to me how you are not one of the mindless acolytes we see chanting at POTUS rallies. Tell me what a thoughtful voter you are and that your support hasn’t been coerced out of you by the Republican/TeaParty/Corporate Overlords. How your choices are intelligent, about policy not personality, just a matter of opinion. A difference of opinion. 

Except, we do not have a difference of opinion. What we have is a difference of willingness. 

I am not willing to let other people suffer because they have a difference of opinion with me.

You are willing to let other people suffer because they have a difference of opinion with you.

That what’s between us. Your willingness to support racism, violence, hatred, lies, scandal, corruption, sexism, oppression…I wish this were hyperbole, but it is not. If your policy choices are about constricting, restricting, and subjugating another American, you are not talking policy, you are talking fascism.

You willingly collude to withhold justice and fairness for all Americans by supporting our current POTUS and the Republican Party. In doing so, you willingly condemn our countrymen to poverty, joblessness, disease, anger, hopelessness, and despair.

You willingly supports a culture that ignores the rape, murder and disappearance of Native American women, and the murder of its black citizens. You willingly support depravity in the way our government treats human beings seeking refuge. 

You willingly accept lies and deceit coming from the White House. You willingly allow the poisoning of children in Flint Michigan. You willingly look the other way, when greed, and profiteering dooms the sick, disabled, and elderly.

You willingly voting for politicians who incite violence against anyone, for any reason, is unacceptable.

You willingly sacrificing the lives of children to protect yourself from an imaginary bogeyman, is unacceptable. People kill children with assault weapons.

I am not willing to accept any of this. How can you?

It’s Not My Way or The Highway

There is not one way to do this life thing. We come at it with differing sets of morals, values, and religions.  But what we share are societal standards, the ever changing social mores of our age. That’s the pinch point for people. Change is hard, especially when it pushes against long held beliefs. 

The basic premise of our great nation is equality. That we are all equal in the eyes of the law and government. It is because we have gone so far away from those basic tenets, that we find ourselves in turmoil. 

How can you superimpose your “right way to live” over mine, unless you believe I am your inferior? That you are “right” and I am “wrong.” 

The world should live only by your rules, your values, your morals, your religion? If you think that, truly believe that is the only truth, you are not one of us. You are not for America, or the Constitution or its principles. That is not what we do here. That is not who we are.

I am not asking you to abandon your principles, but make room for everyone to hold their own. 

If you have any understanding…even the slightest hint that you are not the holder of all answers, for all the people, then you have to concede. Your beliefs do not supersede any other human’s beliefs. Even when you don’t agree with them, you must uphold their right to have them.

How do we reconcile the need for individual choice, with living in a civil society? How do we impose a general regard for life, what is right and wrong for enough people, that it becomes a social more?

We adopt a Constitution that frames those exact circumstance. We live by its tenets, and when it doesn’t work for all, when an injustice arises, we amend it. 

Government for and of the People

Oh wait…we did that. What our Constitution does, is try to equitably disrupt our human inclinations, our quest for power and control, our imposing of the masses will on the minority.

For too long our political parties have been using the baser inclination of fear to control people. This goes against the intent of our constitution and against the idea that people should be free to make their own choices as to how to live a moral life. 

What it comes down to is personal responsibility. A responsibility not only of actions, and inactions, but interactions. It is that personal responsibility that keeps the checks and balances of our government working in proper order. Or it used to.

We are currently suffering a dearth of personal responsibility. One often hears Republicans and the religious right, suggesting that the lack of personal responsibility mires people in poverty and lesser circumstances.  The reality is people pointing fingers at those with the least power as the source of their own problems…100% of the time, is a ruse to hide their own culpability. It is Oz hiding behind the curtain afraid you’ll find out he’s a fraud. 

And that is what our current POTUS is, a fraud, along with all the other Republicans standing behind him. If the government for the people is not taking care of its people, and is only taking care of itself, it is bereft of responsibility to its duty.

How are a bunch of rich, white, men, who are willfully taking away our rights to a government for the people, demonstrating personal responsibility? If they are passing laws that restrict an individual’s freedom, doing away with restrictions on corporations, forcing those in crisis to suffer more, giving to the rich at the expense of our economy, how are they demonstrating their personal responsibility to our nation, to our government, to our Constitution?

Despite All Evidence

I explained to a friend my conundrum. How can I keep writing about facts that hurt Americans when people claim they are a difference of opinion? She pointed out the problem.

Facts don’t matter. You can’t argue with someone who can’t be swayed by fact. You can’t find a compromise with someone who isn’t willing to concede your side is valid. We are in the age of deniers.

Despite any and all evidence, they will not bend to any truth. They decide by personal opinion and “belief.” They are the epitome of “I think, therefor I am right.”

I came full circle back to, “Is this me?” I can hold a hardline and be unyielding in my opinion, true. But do I ignore evidence to the contrary and turn a blind eye to evidence disputing my “facts?”

I don’t think so, but, we all tend to be blind to our personal foibles. So if I’m wrong, if evidence to the contrary appears, I’m open to learning and changing. 

If You Aren’t Part of the Solution, You’re Part of the Problem

My hope, what I’m choosing to believe…is that despite all evidence to the contrary, you–America–are willing to change too. Until then…

The facts in evidence are…We are a racist country run by rich, white men who don’t give a crap about anything but making a buck at the expense of those deemed unworthy…ie women, people of color, nature, basically anyone or anything they can exploit.

And I’m going to keep calling you out on your part of it until I don’t have to anymore.