Category Archives: Clinical Trials

Losing it

Earlier this week I made my morning cup of coffee immediately upon rising, just as I always do. But then I couldn’t find it. Anywhere. And I live in a one room loft. I also left my eyeglasses at a local restaurant over the weekend and as their staff’s search turned up nothing, I’m going to have to buy a new pair. Yesterday I misplaced the bra I was planning on wearing. I later found it in a bowl of oranges. Don’t ask, as I couldn’t answer, because I simply do not know.

Sometimes it’s funny, other times it’s frustrating as hell.

All these years of clinical trials and continuous treatment are catching up to me. Add in menopause and advancing age as well as the fact that I live alone, in itself a rather extraordinary thing for a person dealing with a terminal illness.

Yet there is an upside. I am now convinced that children have incredibly short attention spans by design (so to speak). That if they were able to mull, ponder and plan the way adults do, they might well waste the precious time allotted to childhood. There is a magnificent advantage to a wandering perspective–so incredibly well suited to experiencing the world with eyes wide open and without bias.

With my limited ability to recall, I am rather like a child. Everything feels fresh and seemingly brand new. My focus is short, but also incredibly intense. At times it as if I am tripping, my senses tickled by any stimulus at all. As an artist, this is a boon. Emotionally, it can also be of enormous benefit, as I am no longer prone to extensive rumination; once upon a time, losing my (beautiful and expensive) blue eyeglasses would have undone me, at least for a time. I regret their loss, but in the same way a child mourns a broken toy–briefly.

It is only when I need to function as an adult; someone with responsibilities and hard deadlines, that this lack of linear concentration becomes a true liability. I would in fact consider it almost a disability, although one that is neither obvious nor fully understood by those around me. I believe that might be because my cognitive challenges don’t reflect diminished intellect but rather the increasing inability to retain, recollect and organize information.

I could use some help–some sort of cheery task master. Someone who would commit to a couple of hours each week to assist me with those chores I now find so daunting (paying bills, taxes, getting my vintage clothing business up and running, managing my finances).

I already devote well over a third of my income to health care and I think a personal assistant is likely a luxury above my means. However, I would like to propose that there should be some sort of federal agency (yes, I’m dreaming) akin to the U.S. Department of Veterans Affairs for clinical trial participants. That there be recognition (on the federal level) that in the war on cancer, clinical trial participants are serving on the front line. And that we, like veterans of other wars, deserve some sort of special consideration of both what has been given but also taken. Financially, emotionally, physically.

I’m committed to continuing to fight the good fight–and I do so gladly. With or without assistance. However, if anybody out there with mad organizational skills and a little spare time wants to come hang out, coffee’s included.

*if I can find it 🙂

When noncompliance is your best option

Last week Lungevity hosted the Scientific and Clinical Research Roundtable in DC and I was invited to be the keynote speaker. Really. I could be wrong but I have a sneaking suspicion that most of my invitations to speak will not be followed up with a second invitation. I have transitioned unequivocally from advocate to activist and I’m not sure everyone is ready to hear what I now feel the strong need to say. In a nutshell, I feel that clinical trial participants are the graduate students/sherpas/indentured servants of the cancer world. We do the heavy lifting–it’s all guts and no glory but we can’t say no because we’ve got nowhere else to turn.

I’ve shared the entire transcript of my talk here. It’s a long haul and for those of you familiar with my story, there will be some repetition in the first half. But then I get down to nuts and bolts (or screws and nails, the way I describe my neuropathy).

img_8503

Good afternoon. I am happy to be here today. In fact, I am happy to be here every day.

It’s not something I take for granted, ever. The first thing I do when I wake in the morning is to say ‘I’m alive.’

The wonder never lessens. And that is because a little over eight years ago, I heard the words ‘there is nothing else we can do.’ Never one to turn away from the truth I wanted to know more, I wanted to know how much time remained. The answer was three to five months.

And so I began to let go of my life—and to help my family do the same. Both I and my youngest, then eleven, started individual counseling. I travelled to Colorado, for a hastily organized and tearful family reunion. I said my goodbyes.

But then at my next oncology appointment something totally unexpected happened. A recent biopsy had been submitted for genetic testing and had come back positive for a newly identified target in non small cell lung cancer, an ALK translocation. A phase I clinical trial for an experimental agent targeting ALK mutations had begun recruiting at my hospital. So far there had been only one other participant and he had died within weeks of starting the trial, in part because of side effects of the experimental agent.

It was not a lot of information to go on but I liked the sound of targeted and my oncologist, though cautious, seemed enthusiastic as well. I hoped the drug wouldn’t hasten my death, but I knew that if I did nothing, my cancer would surely kill me. I was between a rock and a hard place but the way I saw it, this clinical trial offered at least a sliver of hope where now I had none. And I said yes.

On October 1st of 2008 I became the fourth person in the world with non small cell lung cancer to take crizotinib. Seven weeks later, as we went over my scans, my oncologist characterized my response as flipping amazing. And all those goodbyes became hello, I’m back.

I got lucky, really lucky. I was at the right place, in the right time, and with the right oncologist. And I’ve been lucky ever since, having now been an early participant in three phase I clinical trials. Innovative medical research has extended my life far beyond what I ever thought possible.

This has meant the world to me and my family. In June, almost eight years to the day after I was told I had three to five months left to live, I watched my youngest graduate cum laude from Phillips Exeter Academy. Four weeks ago he began his freshman year at MIT.

And me? I’m loving life, all of it. 45 when diagnosed, I will turn 57 in November. Between my three kids, art, writing, advocacy and my plethora of friends, I couldn’t be busier.

Of course, I do still have lung cancer. Although I have enjoyed two years of stability on my current therapy, my most recent scan showed progression. I have scans again in two days, and by next week, I should know if it is time to switch things up again.

I hope that medical research will stay one step ahead of me. I also hope my body will hold out.

It has been my privilege to participate in clinical research. But it has also been my burden. I have shared my joy, my gratitude. Now I would like to share my concerns and I feel I have rather a unique perspective for doing so.

There was an old paradigm for clinical trials, and that was that they were usually a one off.

When I enrolled in the trial for crizotinib in 2008, it was with the hope that it might extend my life for several months, nothing more than that. Because honestly, there was no precedence.

Even once it became clear that I’d in fact responded to the experimental therapy, my joy was tempered with the knowledge that I would eventually develop resistance to the drug and that when I did, I was once again out of options. Because that is where things stood in 2008.

I never imagined that I would go from trial to trial, and, at that time, I’m not sure anyone else could have imagined such a scenario either.

But I have and my participation has kept me alive. However, it has come at a price.

Enrollment in a clinical trial requires a greater commitment of time, resources, blood and tissue. And often, additional scans as well.

The clinical trial that I am now enrolled in initially had a protocol that required not only a Chest CT scan, but an abdominal scan, brain MRI, and echocardiogram every six weeks. I might point out that a schedule more akin to every three months is the standard of care when it comes to scans for a metastatic patient. I might also point out that my histology, invasive mucinous adenocarcinoma, almost always stays confined to the chest when it metastasizes, and that I have never had brain, bone or abdominal mets.

Initially my trial also required a bone scan, every three months. I had the first one, and afterward was handed the the same little card that you carry around for three days after every PET scan, just in case someone in law enforcement or at an airport picks up remaining background radiation. This struck me as ludicrous, and also an unacceptable risk with neither scientific justification nor personal gain. I told my oncologist that I wasn’t going to get any more bone scans even if it meant dropping out of the trial. Fortunately she is as invested in my future as I am and as a PI in the trial, was able to contact the sponsor and had the protocol changed.

Fast forward to July of 2015 when I happened to see a report in the Stanford Medicine newsletter regarding DNA damage seen in patients undergoing CT scanning. This line in particular jumped out at me ‘“We now know that even exposure to small amounts of radiation from computed tomagraphy scanning is associated with cellular damage.” I started to think about all the scans I’d had and would continue to get and wondered if anyone was keeping track. With access to my electronic medical records, I decided to tabulate the results myself and what I found shocked me. Now keep in mind that this only reflects care and clinical trial participation at my current hospital, and does not take into account previous imaging, such as the scans that led up to my diagnosis. Or workups for other health issues, or routine imaging such as mammograms or dental work.

When I sat down and counted I found that I’d had 19 chest x-rays but also close to 70 CT scans of my chest. For those of you who don’t know, each chest CT scan, even those that are low dose, has the equivalent radiation of 4-500 chest x-rays. Now multiply 400 times 70 and tell me if that is a number you are comfortable with. I was really surprised when I counted the number of abdominal scans I’d been given; 44. Given the complexity of the tissue in the abdomen, scans of that area of the body expose cells to an even greater amount of radiation. And keep in mind that I have no cancer in that part of my body. Yet. But I do have highly mutable cells.

The first CT scan of my chest saved my life. But is my scan schedule eventually going to lead to a secondary cancer?

I don’t know, but I can’t let that happen. And so I did what any reasonable person would do. I spoke not only to my oncologist, a PI in the trial, I contacted the sponsor personally. However, I really made no headway until I talked to the right person in a bar. That’s right. I have been a peer reviewer for the CDMRP for a number of years and after a session last fall I chatted up a fellow reviewer in the bar—told them my tale of woe. When I concluded he let me know that his wife worked for the sponsor and he was going to share my story with her.

Well sometimes the back door is the right one and this time the sponsor contacted me. I had a private phone conference where I spoke not only about my scans but about what I view as a rather prevalent disregard of the sacrifices clinical trial participants make. And I asked that they not only change the scan schedule, but that they pay for parking.

When I got my response it was from my scheduler. My scan schedule would not be changed. I told her to tell my oncologist that I now had no choice but to become noncompliant—that I would continue to get CT scans of my chest but there would be no more abdominal scans.

I am fortunate that my oncologist truly is as invested in my future as I am. She called me almost immediately and we discussed the situation. To my surprise, she was fully supportive, although she did explain what noncompliance put at risk for me personally as well as for the trial and my institution. I told her that if she asked me to go to Mars the next day I would do it, I trust her so implicitly, but that I simply could not keep getting scans every six weeks for the rest of my life.

The bottom line is this—currently clinical trials are monitored as discreet events, a residual of the old one-off paradigm. No one seems to be keeping track of patients such as myself, who are traveling from trial to trial. I am an outlier, an exceptional responder, and I am also a bit of an anomaly amongst the ALK positive population with my invasive mucinous adenocarcinoma histology.

But that is the point—I am first and foremost an individual, a human being. Participation in clinical trials does not cede my humanity, although it certainly does result in a certain loss of autonomy. And words like compliant and noncompliant only underscore that fact.

Per my scans—I really like to do things the right way. Also, as an advocate, this was never just about me but rather about everyone who participates in clinical trials. And so I would periodically contact the sponsor. What I didn’t realize is that my oncologist was also in continuing dialogue with them about the scanning schedule. Several months ago I got word that the protocol would be changed and that after a year on trial, participant’s scans would move out to every three months, the standard of care. When I spoke to my oncologist, I realized that it was her input, not mine, that made the real difference. But the important thing is, she respected my concerns which motivated her to request a change in protocol.

As for me, I moved to the every three month schedule as soon as I heard the news, even though it is not yet official. Jumping the gun a little, but then again, I remain noncompliant as to my abdominal scans, so what’s a skipped chest CT scan or two. And don’t think I am simply being cheeky—I donated my body to science a long time ago and I feel no guilt when it comes to a skipped scan or two.

I still wish I didn’t have to get brain MRI’s every six weeks—I’ve now had almost thirty and nothing causes me more anxiety than the loud clanking, claustrophobia of a brain MRI. Also, I am convinced that we don’t yet understand the risks—again, there is very little precedence for such a frequent MRI schedule in someone with healthy brain tissue. After reading that the contrast agent, gadolinium, is not readily cleared from the body I did request that we forgo contrast so that is one small victory.

The irony is, were this anything other than a clinical trial, say, a war or a sporting event, I and my fellow participants would not be fighting for our basic human rights. We would be decorated for our valor, celebrated, maybe even highly compensated. And we can’t even get our parking comped.

And yet, I am alive. It is a wondrous thing, and something most people take for granted.

I would do almost anything to stay alive. I already have. But I am also not willing to throw away this second chance at life by submitting to ridiculous requirements simply to satisfy the science and to speed drugs to market. As Richard Pazdur has said, ‘People are not for clinical trials. Clinical trials are for people.’ It’s imperative that we not lose sight of why trials exist in the first place. It is not to advance the careers of researchers. It is not to keep oncologists and hospitals in business. It is not to enrich sponsors and their shareholders.

Rather, it is to provide patients such as myself with an opportunity to hang onto our very dear lives.

*for a dose of happy/hopeful Linnea, check out this video interview about Clinical Trials from the Lungevity site.

Linnea live (I like the sound of that)

This video was recorded at the annual LUNGevity Hope Summit in 2014 and fits in perfectly with the theme of clinical trials. When I refer to starting a new trial, it is for PF-06463922 or lorlatanib (which has kept my cancer stable for 18 months now–woohoo!). I’m a little breathless and hoarse as my cancer was advancing again. I noticed immediately how fast I am speaking– markedly slowed speech has been a side effect of PF-06463922.

Slow, fast, hoarse or not, the most important message here is one of hope (thank you LUNGevity). When I mention going from cure to living longer I am talking about accepting the fact that I would never be cured. That’s a difficult concept to embrace but in order to make it even remotely acceptable I found I needed to replace cure with a potentially obtainable goal—becoming an outlier. At ten plus years (eleven, in April) I am there.

Secondly, the importance of options. When diagnosed in 2005, the first hurdle I hoped to jump was qualifying for surgery. I had nineteen lymph nodes and most of my left lung removed followed by four rounds of adjuvant chemo and yet my cancer returned almost immediately. Two strikes, and I’d been informed that treating lung cancer was basically three strikes and you’re out. My first clinical trial in 2008 was a long shot. I was thrilled beyond belief when I responded to crizotinib, but also understood that it represented a temporary fix and that there was nothing else out there once it stopped working.

Thankfully, that’s no longer true. Sadly, there aren’t viable options for everyone with lung cancer. Medical research got me to where I am today (alive!) but we can’t stop now.

Soldier in the war against cancer

Some of you may be wondering where that nice girl Linnea went. Well, beneath my relatively calm, cool facade lurks someone who simply won’t stand down if I feel there is something that can be done to make a situation better. And in this case, any change that comes about is going to happen only after some intense dialogue. In others words, we’re just getting started.

Secondly, I want to make it clear that I am not thinking only of myself. I was in the right place at the right time and have been fortunate to have been breaking trail ever since. As I have pointed out to those willing to listen, very few people in the world have had the opportunity to be in three phase I clinical trials—generally people died while enrolled in their first trial. There are going to be a lot more folks coming down that trail of multiple trials (hallelujah!), and I feel a great responsibility to make the path ahead as accessible as possible.

I also don’t wish to downplay the additional psychic benefit that I and my fellow trial participants get out of knowing that we are making a viable contribution to medical research. Take twelve minutes to watch this video about David Phillip Vetter, the child once known as the bubble boy. His mother dreamed that one day he would leave the bubble and engage in research himself. Ultimately it was his personal ordeal that made the greatest contribution.

Most of us fantasize about doing something significant for mankind and finding a cure for cancer is at the top of the list for many. We can’t all be scientists but there is another way to advance medical research. In the war against cancer those of us who participate in clinical trials are soldiers on the front line, and it is time that we be accorded the same respect as veterans of other wars.

Dear Pharma;

For all but one of the past seven years I have served as a peer reviewer for the CDMRP. It is perhaps the toughest form of advocacy that I have undertaken but also one of the most rewarding. I never got around to mentioning it (oh, I am so behind!) but last summer I was featured as a consumer reviewer on the CDMRP site. I was honored as I am to simply serve as a peer reviewer and I encourage any of you who are interested to apply.

My featured story gives a shout-out to medical research and segues nicely into the next part of my post, which offers a slightly more critical view of clinical trials.

The thing is, I ❤ clinical trials 100%: I absolutely would not be alive today had I not had the opportunity to enroll in a clinical trial back in 2008. Because of how far down the treatment pike I have come, clinical trials are my next best hope and I am keeping my fingers crossed that when the time comes, there will be yet another in which I can enroll.

Unfortunately, clinical trials have a bit of an image problem, as many people consider them risky and a choice only for desperate people—something I can’t really argue with. When I enrolled in my first clinical trial it was a different time; one with absolutely zero expectation of success (and yet a wild fleeting hope, which was the motivation behind my decision to enroll). However, with the advent of targeted therapies as well as a sudden wealth of experimental therapies to treat NSCLC, more and more people are enrolling in not just one, but several clinical trials.

The previous paradigm was one which assumed that participants in trials were likely on their last leg. Issues relating to quality of life were simply not considered. I’ve now spent almost a tenth of my life enrolled in a clinical trial and last summer, after Stanford came out with a report about the cellular damage exacted from each CT scan, I sat down and counted how many scans I’d had. And I was shocked.

Since then I’ve been trying to find a sympathetic ear. At the end of our first day of CDMRP peer reviews this year, I chatted up the right person in the lounge. They connected me with someone from the pharmaceutical company who is the sponsor of my trial and I sent them this email. I’m sharing it with you now because a member of my blogging community recently asked the question online as to whether or not it was better to stay in a trial or to switch to prescription once a therapy has gained FDA approval. It was my viewpoint that if it meant a decrease in scans, I would switch to prescription.

So back to the image problem. Only 3-5% of cancer patients enroll in clinical trials and I believe there is the potential to increase those numbers. And I think it might well start with really recognizing the contribution trial participants make. How about just saying thank you—at the end of every peer review I receive a nice note from the Department of Defense thanking me for my service–that gratitude and recognition never grows old.

Dear Pharma:

Please know that I don’t feel that this is under poor circumstance—I would just like to start some dialogue. When someone is feeling disenfranchised, the first thing they want is to feel heard.

I would love to speak to you on the phone and would also welcome an opportunity to share my perspective with a larger audience. There is a lot of buzz about patients as partners but we can only be a partner if we have an equal voice. I am grateful for and a champion of clinical research (my eighteen year old son had an internship at the Koch Institute this summer, and was engaged in pancreatic cancer research). I am also only too aware that I would not be alive today without clinical trials. However, as this is my third phase I clinical trial, I am in a unique position to offer some observations about how that process can be made better for patients.

A couple of talking points that I would like to discuss:

1. The loss of autonomy. As a patient becomes a participant they lose some control. Per my issue with the number of CT scans I’ve had—even my oncologist was surprised when I told her that I had added them up and that I’d had more than one hundred. Obviously, no one is keeping track of this sort of thing and with patients now going from trial to trial, I feel there should be some guidelines established and I don’t feel those should be guidelines of exclusion (because most of us will do anything to stay alive). Rather, I think that there should be a way to view participants as individuals and not just data. In my case the scans to my abdomen and head are totally uncalled for and expose my already mutable cells to additional radiation. Ideally there would be a way to follow me in a trial but to also take into consideration that I have a lung cancer that has and almost certainly will remain contained to my lungs.

2. Parking. That’s just sort of my bottom line. I was at my PCP’s yesterday (also at MGH—where I get my cancer care) and saw a bulletin board with notices for participation in clinical trials for things other than cancer. The participants would be compensated ($) and given parking vouchers. This always burns me up. Everyone makes money off of my disease but me, and I’m the one who has to have the stupid disease in the first place and I’m supposed to always be in grateful mode. As I tweeted a week ago–‘I ❤ being alive but I want free parking too’. I just don’t buy this inducement stuff. I also tweeted (I’m going all radical on you) in a conversation about patients as stakeholders—‘I don’t just want to be a stakeholder I want to be a stockholder too’. I’m really not kidding—I think it is time to talk about the major contribution early participants in clinical trials make. Another analogy—there would be no horse and pony show without the horses and ponies.

3. The story about my having to pay for Xalkori the second time around. Obviously there was no way for anyone to know I was the 4th person in the world (with NSCLC) to take this drug. But even if they had known, it would not have made a difference. I was able to afford Xalkori by prescription only because I qualified for financial assistance (not an easy process to go through when you are stressed, alone (I had recently separated from my husband) and, to be frank, once again heading down a path where if things don’t change, you will soon be dead. The whole experience kind of dashed any feeling I might have had that as an early participant I was somehow special. In truth, I feel early participants should be accorded the same sort of respect that veterans of the service are. We put our lives on the line, taking risks that many, many people never would. And our sacrifices benefit all.

4. I think it would behoove pharmaceutical companies to develop a patient advisory council. I have served on such a council at MGH for three years now and we have provided feedback on any number of healthcare initiatives.

5. Compliance. According to my nurse, compliance is only 60% in the trial I am currently in. Prescribing oral chemotherapies in a pill bottle just seems crazy to me. A blister pack (with a way to have a calendar printed on it) would be such a simple way to help patients with dosing. As one of those (often) non-compliant patients, I have such a difficult time recalling whether or not I’ve taken my pills and so skip a dose rather than risking double-dosing.

It is my understanding that only 5% of cancer patients enroll in clinical trials. I know little about the regulatory process but I do believe that if participants were treated better (induce us!) those numbers could rise. And I would love to be part of the conversation about how to make some improvements.

Gratefully,

Linnea Olson

Time for GRACE

Alright, I’ve been really damn quiet again. I’ll get to this later, but my current therapy has come with a lot of cognitive side effects. Memory loss, a bit of accompanying confusion and frankly, a tough time talking (it crosses the blood brain barrier and has an effect on my speech center).

However, I still said yes when GRACE asked if I would share my story on video. Two and half minutes of Linnea live in honor of GRACE and Lung Cancer Awareness:

Loud uncle paired with a quiet whine

Yesterday was a humdinger. Two treatment-related mistakes in, I realized that not only am I over-overwhelmed, it’s time to do the big ask: Help!

Shortly after after posting my previous blog (and following much back and forth), Dr. Shaw and I decided that canceling my mediation was not a good idea. The prospect of getting three lawyers to readjust their schedules just felt too daunting. And, until we reach a settlement, I am still completely dependent upon David financially and that is not where I want to be.

Alice (Dr. Shaw) very kindly opined that medically it would be okay to wait a week. I emailed back that I would then delay wash-out and continue taking my Xalkori for one more week. This was her adorable response:

Yes. Twice per day! 🙂

Well, evidently I overdid it by one pill, and because of that the trial start date could be delayed (really?). That was mistake number one. The second screw-up was getting confused as to the time of a scheduled MRI and arriving fifty minutes late. They graciously squeezed me in but it easily could have meant another trip/potential delay.

So let me describe my little day from hell. I was up at 6:30 am with the intention of getting on the road by 7:30 for a 9:30 am dermatology appointment. A mere 24 hours earlier I had been looking at my left shin with my glasses on. I have very long legs and increasingly poor eyesight and if my glasses aren’t on, anything below the knees is blurry. Well, there’s a mole mid-shin that a dermatologist at MGH has been watching, and what I saw when I looked closely was concerning—particularly the numerous small black spots that now peppered the surface of this little ‘beauty spot’. I had a basal cell cancer removed at the age of thirty and my father Ollie had numerous basal and squamous cell cancers as well as melanoma. My chart must have me ID’d as high risk, because when I called for an appointment they marked it urgent and got me in yesterday.

Anyway, that’s the back story. I got on the road by 7:45 and realized I had missed Peter’s 7:20 wake-up call. Placed that–we’re getting this routine down, and as silly as it may seem, I love speaking to him briefly each day. And then I settled into what is always a horrific commute. What can take half an hour turned into and hour and a half. I got to dermatology just before my appointment. Fifty minutes and five magazines later I asked the receptionist if I’d be seen soon—as I had more appointments over at Yawkey starting at 11 am. Oh dear. Seems she forgot to let them know I was there…she was very apologetic and I was seen shortly thereafter but it was some additional stress I could have done without.

Anyway, one look at the mole and the dermatologist said ‘biopsy it’. His feeling was that it represented a basal cell, but given the pigmentation and appearance, melanoma could not be ruled out until the pathology report came back.

I had a punch biopsy performed and I will hear the result in seven to ten days. As the doctor said (a wee bit too glibly, I felt). ‘You don’t want to hear back from me.’ If a nurse calls, I will know it is reassuring news. If it’s the doctor, do you think hanging up would make it go away?

I had to practically run back to the Yawkey building (a challenge at this point) as an Echocardiogram was scheduled for 11 am. I was ten minutes late and breathless to boot, but the test proceeded anyway. Evidently I shall have these periodically during the upcoming trial, as there have been some (asymptomatic) reports of prolonged QT interval.

After that, it was labs and an EKG on Yawkey 7B. I spoke to the trial nurse and my scheduler, and ended up with just enough time for lunch before I had to begin fasting for my pre-trial abdominal CT scan. I enjoyed my rushed meal but for dessert I had a brain fart—thinking I had time to sit in the MGH cafe and browse on my laptop before heading over to Chelsea where the scans were scheduled. Oops. At 3:20 I realized my brain MRI was supposed to occur at 3:15. I placed an apologetic phone call and did my best to rush over—something that is impossible at that time of day. Forty five minutes later I arrived at Imaging in Chelsea and (because sometimes you do what you have to do), drank one of those hideous barium shakes. I did beg off the second one.

Well, it looked as if my MRI would need to be rescheduled, but bless their hearts, they squeezed me in. It was almost 7 pm when I left. Exhausted.

So here’s the ask. I’m an independent sort by nature and a good deal of my journey with cancer has been rather solitary. Sometimes that has sucked but mostly I have managed (got my own back sort of thing). However, I confess to harboring a small amount of envy for those cancer patients who have a lot of support. Medically I’ve got the best squad a girl could ask for but I’m thinking I could use a little…Team Linnea. Family/friends/folks who might be willing to go to appointments with me. I’ve got some long ones coming up as I start the trial and it is always easier with company.

As soon as it is finalized, I am going to publish my schedule. If you’d like to spend a day in the life of a patient in a phase I clinical trial, don’t be shy! All comers welcome!

And while you’re at it, please cross your fingers that the skin biopsy comes back benign (best) or basal cell (better than the alternative). I don’t need any more wrenches thrown into this affair. My son August sent me this e-card, which nicely sums up my current sentiment:

10152646_10152422082198708_4231432561548744429_n