Category Archives: Uncategorized

Don’t call me partner

Warning: this may be the most contentious blog I’ve ever written.

That is because I am about to desecrate a sacred cow–the idea of patient as a partner in medical research. Lovely in notion, the reality is something quite different and nowhere has that been more clear to me than sitting in the audience at DPharm 2018.

Let’s start with the straightforward definition of partner:

And then let’s parse that definition, piece by piece. A person who takes part in an undertaking with another or others. I have no quibble with this. As a participant (I refuse to call myself a volunteer—I did not ‘volunteer’ for this shit) in a clinical trial, I am a member of a ‘team’ composed of researchers, other participants, clinicians, schedulers, nurses, sponsor, phlebotomists, techs, lead investigator, regulators; even payers.

Every member of this team has an important role to play and, as the term stakeholders implies, to a certain degree the outcome of our endeavor will impact each of us personally.

However, this is where the concept of partner starts to fall apart; shared risks and profits.

No one has more on the line than the participant. The skin in the game is not figurative for us, it’s our actual tissue. Best case scenario: we get to continue living. Worst case scenario: we die. Those are some pretty bloody high stakes and not in the same category as fourth quarter losses.

And now we get to the word profit. Don’t even get me started. I pay for the privilege of participation. Clinical trials are not gratis. The experimental agent/therapy is provided to me free of charge and sometimes certain labs or procedures; in the trial I am currently enrolled in echocardiograms are covered by the sponsor. However, everything else is billed to insurance, and I am responsible for deductibles and copays. Gas, parking, lunch—all paid for by me.

And then there is the physical toll. One hundred and one chest CT scans, 60 abdominal CT scans, 42 brain MRI’s.

So, let’s just get really real here and stop the pretense. I am not your partner and if I am, this is one heck of an abusive relationship. One in which I am bound to you by desperation, you call all the shots, and my only true power is to withhold. Where words like compliant and noncompliant are used to describe me. One in which your need for data is greater than my need for autonomy/personal safety. Sure, you keep me alive but you can also kick me to the curb if my cancer gets out of line again. And when and if you do, there will be nowhere else for me to turn.

We are codependent, you and I. That much is true. But we are not equals and certainly not partners. And we won’t be until you recognize that I am a human being. That I have hopes and dreams and family too. It is my bad luck that I also have cancer. I want to live and I will do almost anything to stay alive. You know that. But don’t exploit it. Do not continually ask me for more blood, more sweat, more tears, more money.

Instead, provide me with genuine support. Understand what I have sacrificed and compensate me for my time, just as you compensate healthy ‘volunteers’ in clinical trials. Being a subject in a trial does not mean that I am also subhuman so treat me with the respect that I deserve. Let’s ditch the condescension and start with transparency. Stop pretending that I am your partner. I know what a true partnership looks/feels like, and baby, we’re not there yet.

Does it get anymore ridiculous than this

Really? A little bit of radiation is good for us? Tell me the EPA is not really on board with this: ‘Calabrese and his supporters argue that smaller exposures of cell-damaging radiation and other carcinogens can serve as stressors that activate the body’s repair mechanisms and can make people healthier. They compare it to physical exercise or sunlight.’

Perhaps chemotherapy is also good for our skin and maybe cancer itself is character building. I sure feel a hell of a lot better about my 101 chest CT’s now. And those 37 chest x-rays? Just icing on the cake.

Read the whole ridiculous article here, at STAT. And weep.

S.N.B.T.H.

That’s my go to complaint. It really should not be this hard. But it is.

Health insurance. Didn’t want to fess up but I’ve been without it this past month. Long story short, the assistance I was counting on per making my selection did not come through (not responding to emails is such an easy way to blow someone off) and when I showed up at the office in person instead (an hour drive, each way) I learned that A. I had missed a deadline and B. I needed to go back home and get on the phone with the folks at the Mass Health Connector anyway.

So….I cancelled my appointments for September and before I left the hospital, stopped by to see my clinical trial nurse. I should always talk to a nurse when I have an issue—no one is more empathetic, more pragmatic or less likely to take shit or no for an answer than a nurse. I then made arrangements with Alice to contact the sponsor to see if I could get drug even though I was not coming in for my labwork/echocardiogram.

Arrangements were made to have my drug mailed to me (not quite without a hitch–they forgot and it had to be overnighted) and I figured out (on my own) which policy would work best for the remaining three months of this calendar year–a higher premium, no deductible plan. As my income is 360.70% of poverty (yes) I qualified for a tax credit which brought my premium down by $127.00 a month.

I feel better when there’s something in my checking account, so I waited until last Friday, three days prior to the deadline, to choose my plan. Because the 23rd (the deadline you have to pay your premium by in order to get health insurance for the following month) was on a Sunday, I needed to get my online payment in by that afternoon. When I attempted to log onto my account, the system did not recognize me. I called back, and was offered two options—drive an hour to Boston to make a payment in person or wait another three hours at which time I was assured my account would be active. I gambled on the latter. Three hours later I still did not register and I placed another phone call to the Health Connector. This time I was again assured (and by now I was in tears) that even though it wasn’t working now, my account should be online by the next day, Saturday.

‘I don’t think you understand’ I explained to the woman on the other end of the line. ‘I am a cancer patient, I already had to cancel my appointments this month, because I had Cobra if I don’t get insurance by the end of this month I can’t get it until January, and if I don’t have insurance for next month, I will have to cancel my appointments again in October and will likely be kicked out of the clinical trial I am enrolled in. I need to know that this is going to work.’

I had a good cry after hanging up and a giant pit in my stomach. And, just as I’d feared, I was never able to access my account.

So I called first thing this morning only to learn that their entire online system was down and that I would need to call back later. I did, two more times. By this afternoon it was finally up and running and I spent an hour on the phone with a very sweet and patient representative. By the end of our phone call I was talking to someone else–an account specialist–as it had been determined that there was a technical error on their end–my billing account had never been activated.

I was given a case number, as this would now have to go into resolution. And I was now informed that I could have health insurance for October but only if I paid for November as well, even though the mistake was theirs. The reason being that the system would not recognize my retroactive payment as an active subscriber as we were past the billing period unless I paid for the next month as well.

Sigh.

The dollar amount for two months of premiums exceeds the amount I currently have in my checking account by several hundred dollars. As in, not doable. I have been told that my case will take several days to resolve. I have to hope that by then my alimony check will have arrived so that I can make the payment.

Caseworker y’all. It would be so great if I could worry about staying healthy and somebody else could help me with this other crap–all of which is a cumulative side effect of years of living with cancer as well as clinical trial participation. Cognitive, financial, emotional toll; unrelenting stress. The wear and tear of dealing with an advanced cancer for almost one quarter of my life.

It’s hard, really flipping hard. And until there are more supportive services in place, it’s not going to get any easier. As in, bucket list, my ass. I’m just trying to get by here.

A new day

I went to bed early last night because I was feeling depressed. Sleeping is generally one of the least harmful activities one can engage in while under the influence of overbearing sadness.

Depression is a funny thing. Never a welcome guest, it arrives unannounced, moves on in like it owns the place, and then proceeds to do whatever the hell it wants, including but not limited to, absolutely trashing everything.

Oy. And never a clue as to when it might decide to pick up and leave.

Well, I woke up on the same side of the bed as usual this morning and yet…something was different. By the time I got home from walking Lily and Kumo I realized that I was in a good mood.

Yeah. That was more like it.

Suddenly everything that felt like an overwhelming burden/impossiblity yesterday now looked a whole heck of a lot more like an opportunity today.

I got on my laptop and started cruising not just the classifieds but also websites for grants and residencies for artists and writers both. And as I did, I started to feel a wind in my sail. I can do this I said, and unlike yesterday, I wasn’t talking myself into anything. Nope. This was true affirmation, the can-do that is my usual MO. I am an overcomer. It’s not for nothing that ‘Adversity Expert’ is one of my tag lines on my current curriculum vitae.

Nope. Challenges are something I eat for breakfast. So let’s get back on track. 😉

So this is pretty fabulous

I want to share something wonderful with you. As a member of the ALKPositive group, I offered to start an Instagram page where photos and stories of ALK+ patients could be shared. I knew it would be special but I had no idea how special. Nor did I realize how moved I would feel as I transcribed these individual stories of suffering but also formidable grace and courage. So many beautiful faces. Almost all of them stage IV. Far too many of them young, including a number of women who were diagnosed either while pregnant or just after giving birth.

But what shines through the most? Love. Lots and lots of love. Please go to Instagram and check it out at alkpositiveworldwide. Follow us. If you are ALK+ (or if you have lost someone who was–this is intended to function as a memorial as well) and you’d like to be part of the wall, submit a photo to me as well the following information: Date of diagnosis, stage and age. And a brief statement about living with ALK+ lung cancer.

This is our opportunity to show the world the faces of lung cancer. Brave, beautiful, loving, living, finding ways to cope and always, always hoping.

For the record: my contribution to medical research

First, a proposal. All you clinical trial sponsors, listen up. I really feel that upon enrollment in a clinical trial, each participant should be assigned a case manager as a perk of participation.

In reality, it is a necessity.

Take my case as an example. Thirteen going on fourteen years of surviving. A complicated treatment profile that involves surgery, four different chemotherapy regimens, as well as a TKI unrelated to ALK. Participation in three phase I clinical trials added into the mix.

When a protocol for a trial is established, it is viewed as a discrete event. IRB (internal review board) notwithstanding, there is currently no way to take into account individual circumstance. Say, how many clinical trials you’ve been in previously.

Or, do you have a cancer that is histologically different than the other clinical trial participants. Again, myself as an example. My cancer is invasive adenocarcinoma, mucinous, once referred to as mucinous BAC. Although every bit as lethal, it does have a distinct advantage in that it generally stays confined to the lungs–no distant metastases to deal with.

This histology makes me an odd peg when it comes to a one size fits all clinical trial. And it means that I have been subjected to excessive scans that were not clinically indicated and yet were mandated by protocol.

It is already well established that I have mutable cells. When I finally took a tally of all my scans, I became concerned and made a formal request that my scanning schedule be amended. I should add that at this point the schedule bore no resemblance to standard of care, with scans every six weeks. Part of what I was asking for was that scans be moved out to every three months once a participant had been in trial for more than a year. My request was denied.

And that is when I became officially noncompliant–refusing to get anymore abdominal CT scans. Per my insistence, my chest CT scans were also moved to every three months. Eventually, protocol was changed to my original request, with the scanning schedule changing to every three months once a participant had been enrolled for one year and I like to think my noncompliance made a difference.

However, for myself, the collateral damage has been tremendous. I have had a mind boggling number of scans, most of them medically unnecessary. It is infuriating, frightening and sad. Had I a case manager, I like to think this sort of thing would not have happened. At the moment, I am down to a chest CT every three months and brain MRI’s once a year. When you see how many scans I have had, imagine how many more there would be if I had not become noncompliant several years ago.

We’ll start with the small stuff. Keep in mind that this is only tests I’ve had done at MGH. It does not included x-rays (including those at a community hospital where I was diagnosed with lung cancer), scans, MRI’s prior to my time at MGH nor does it take into account dental imaging, colonoscopy or mammograms.

🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗➗✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️⭕⭕⭕⭕⭕⭕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕➕⭕⭕⭕⭕⭕⭕⭕⭕⭕⭕☢️☢️☢️☢️☢️

The thirty-seven blue diamonds 🔹represent chest x-rays.

Brain MRI’s are represented by a division sign: ➗ and I have had forty-two brain MRI’s. In case you didn’t catch that, 42. And I have no brain metastases. 

The black multiplication sign ✖️ represents abdominal CT scans. I have had 54 CT scans of my abdomen. Plus six more, represented by the red circle ⭕ that were combination PET/CT scans (unbeknownst to me—the PET/CT combination). So, a total of 60 abdominal CT scans and no abdominal metastases. Yet. Abdominal CT scans have a formidable amount of background radiation and it pains me to know that I have had so many unnecessary scans due to my participation in clinical trials.

And now the really, truly impressive number. Represented by a plus sign ➕ . I have had 91 chest CT’s—plus an additional 10 PET/CT’s of my chest, again represented by the red circle ⭕ . One hundred and one chest CT scans. At least there is some clinical justification here, as I do have cancer in my lungs. However, even given that, had I not spent so much time in clinical trials, there is no way I would have had so many scans.

Oh and this symbol, the radioactive emoji: ☢️ . That’s a stand in for the full body PET scans and Bone Scans I have received. I should add that when I began this trial there was a requirement that a bone scan be given every three months. I told my oncologist that I would drop out of the trial before I’d get a bone scan that often and she contacted the sponsor and in that case the protocol was changed.

My calculated cumulative radiation exposure

For those who are curious, here is a graphic on the amount of radiation received by survivors of Hiroshima compared to other sources of radiation.

On the balance, there are patients who are underscanned. All of us would rather err on the side of caution. However, I would argue that in my own case, caution was thrown to the wind. As I moved from patient to participant, I lost my autonomy/individuality, as the need for data superseded my own clinical necessity.

There is no justifiable excuse for the fact that I endured 60 abdominal CT scans and 42 brain MRI’s and that as a result of this excessive scanning, I now have a gadolinium deposit in my brain–a finding with unknown clinical significance.

What is known is that no human being should receive as much radiation as I have unless it is absolutely medically necessary. And it is not hard to argue that given my lack of distant mets, those 60 abdominal CT scans and 42 brain MRI’s were not for my benefit.

Nope. I have, in so very many ways, already donated my body to science. And that’s why my gratitude is tempered.

My participation in clinical trials has been a privilege. But also a burden. In forthcoming blogs I shall reiterate my stance that clinical trial participants should be not only recognized for their tremendous contributions to medical research, they should also be offered support in multiple ways. A case worker. And compensation.

Bounce

I don’t do things halfway and when I go low, I go low. Take no prisoners, lethal sort of low.

My face couldn’t couldn’t get out of the way soon enough and so I made a minor mess of it. If you’ve never picked your skin you wouldn’t understand, but if you have, you know. Damned if you do, but in some sick way, self damage is an amazing way to relieve stress. However, just like alcohol, it tends to make things worse the following day.

That said, my mood is on the upswing. Sometimes when you hit bottom you bounce. I plan to take that momentum to propel me forward into some healthier activities. Writing (I’m on a roll), working on my health insurance, going to the gym and yes, painting.

It’s been a long time since I’ve held a brush but my easel beckons. And getting my art on might just be the perfect antidote to much of what ails me.

That, and the always amazing outpouring of love and support that a post brings–both here and on Facebook. Thank you. Know that every message goes straight to my heart in the best of all ways and that as alone as I feel at times, I’m really not. Because I’ve got all of you. ❤