ONE LAST POST ... For my mom

My mom is gone. In a span of less than 15 years, I went from being the granddaughter of a vibrant 94 year old to being the eldest in the family.

In a manner of speaking, with one final breath, I became both an orphan and The Family Matriarch and it is heartbreaking.

My grandmother died in March of 2006, just before I stepped into the maze of learning I had invasive lobular breast cancer. While I was still on chemotherapy, my dad was diagnosed with an early stage lung cancer. In July of 2007, he died of complications from the chemotherapy. His death was likely related to the many surgeries he endured for unrelated issues, weakening him in ways none of us could understand. One month after his death, my mom was diagnosed with a second primary breast cancer. Her first diagnosis, at age 49, was in 1987.

Many of you know already know my messy family medical history with breast cancer. My mom was a two-time five-year survivor. Until she wasn't. In January of 2013, we learned her cancer had metastasized to her bone. It was believed, but never confirmed, the disease spread from the first, more aggressive cancer. In other words, it was a late metastasis. It was 26 years after her initial diagnosis. Or, it was from the second time. Regardless, she still hit that magic 5 year celebratory mark. Both times.

I question things that I should not question. We learned in May that the treatment she was on for 18 months was no longer working. In the midst of a pandemic, when a change in care was warranted, there was no way of having a productive discussion about next steps. She was routinely scanned every three to four months. When the scan in May was not good, our doctor called her. I was always there for those appointments but no one was permitted inside with patients and the discussion about next steps was not so much a discussion, but rather a phone call from the doctor explaining "this is what's next."

There would be no more targeted therapy. There would be no more oral medication. Next up was an infusion of a chemotherapy agent approved for use in 1996. The only thing mom did when this was discussed between her and the oncologist was ask him to spell the name of the drug they would be using. After she spoke to him, she called me.

I was conflicted. I didn't think that this path was necessarily the best path. In my heart and in my mind, I wanted to have a discussion about transitioning to palliative care. I had the opportunity to address this idea with the oncologist. He said he would put it on the table but having spent years seeing my mom each and every month, he knew her as well as anyone. "Your mom is going to want to do something." And I know he was right. So I stepped aside and watched with a heavy heart as it all played out.

The first chemotherapy beat her up badly. She was spiking fevers, she developed an infection, she had no appetite, she was dehydrated. She was in and out of the triage area on several separate occasions to be treated for a variety of issues. After the very first infusion, it took a month before they could attempt a second round with a 50% dose reduction. That, too, beat her up badly. She spent five days at my home after one triage visit where she was so weakened, it was unsafe for her to be alone. Either I would stay with her or she would stay with me.

In August, another scheduled scan showed she was not responding to the chemotherapy. After a series of discussions, I was granted an exception and allowed to accompany her for her visit. A clinical trial was offered and mom signed the consent. The next day, we learned she wasn't eligible for the trial. She was disheartened. I was annoyed. She met the primary eligibility criteria but the manner in which they would be measuring progression of disease was a problem. In my mind, now with an arsenal of knowledge about clinical trials, this was a systemic failure. It was a failure in the design of the trial. It was a failure by the team assessing her eligibility for not looking at her complete medical history (and yes, they had access to all of it) before offering the trial in the first place.

So, in the beginning of September, she began yet another cytotoxic agent. Another old drug. Where is all of the progress when the best that could be offered was a drug that was approved over fifteen years ago. Again, she was beaten up very badly. It took eight days for her to feel better. I was with her on September 16. I recorded the visit. I just listened to it the other day. She was glossing over things and I was interjecting with the things she seemed to have forgotten. I know it wasn't intentional on her part. The mind has a way of allowing us to think "It wasn't really that bad." But, it was. The doctor wisely opined to mom, "She's here to keep you honest."

Again, a dose reduction was put in place and September 16 was the very last day mom felt "normal."

She fell on October 3 and she died on October 19. She was laid to rest on October 28.

I saw her a couple of times before October 3rd, and I spoke to her every day. The morning of October 3rd, I called before 11AM to see how she was feeling. The day before, she told me she was regaining her energy a bit. I didn't think much of it when she didn't pick up the phone. I thought she might be in the shower believing her words the day before when she said she was feeling a little better each day. It was clear, however, she would not continue this regimen. She said she was done with chemo, but she also said, "If there's something not quite as harsh ..." and I let her trail off with her thoughts.

I knew we were ready to have that all important talk about quality of life as the single most essential component for what would come next.

After leaving the message on Saturday morning. I got distracted by a couple of things and hours went by before I saw my aunt's phone number come up on my phone. Both of my aunts went to mom's to get her out of the house. They found her on the floor, in her bedroom, barely conscious. Before calling 911, they called me. "Anne Marie, she's delirious. She's confused. We can't lift her." I'm sure that entire call, which felt like it was a very long time, was likely under a minute. "Call 911, and I'm on my way to the hospital. I'll be there before the ambulance arrives."

As I was heading to the hospital, a bit of a glitch occurred. The EMT's were planning to take her to a different hospital. My aunts were pleading with them. "Her daughter has all of her medical information. She's likely already at the other hospital." Again, my phone rings. First, I heard my aunt and then an unknown male, "This is EMT, Michael. What can you tell me about your mom?" I willed myself to disengage from the crippling fear and the emotional upheaval I was feeling. I began speaking in medical terms. Mid-sentence, I heard Michael call out to his team, "We're going to Huntington Hospital."

I waited at the ambulance bay and as soon as I saw the ambulance, I felt the tears falling. I blinked them back quickly as EMT Michael jumped out. "Anne Marie?" I identified myself as I watched them open the doors and remove my mom from the back. "Come with me," he said and I recall replying, "They aren't going to let me just walk in the trauma area. COVID and ..." He simply said, "Walk beside me and let's see what happens."

The doctor in the emergency trauma area was wonderful. As the team jumped into action, administering antibiotics and placing her in warming blankets, I learned she was septic and hypothermic. Her condition was grave. The doctor asked me what mom would want under the circumstances. Still in logic mode, I stopped her before she had to go into a lengthy explanation. "I need to sign a DNR. Please get that for me." Emotionally, that was the hardest thing I have ever done in my life. Logically, I was acting in accordance with mom's wishes, and as her legal proxy as laid out in documents both written, and based on many discussions.

The doctor continued to try to piece together how long she might have been on the floor. I knew she didn't answer the phone at 10:30AM but who spoke to her or saw her on Friday night. The best estimate? She was on the floor for possibly as long as 12 hours. Just the thought of that is heart wrenching. I remained by her bedside in the trauma bay most of the time, only being asked to sit in the waiting area when they were going to take her for additional scans and x-rays to see if she suffered any broken bones.

In no time, I was being called back into the trauma area. The technician who was bringing me back was saying things. It was just a jumble of words I couldn't comprehend. "Not the best news." "It's not good news." And, as I watched them scrambling to find a chair so I could sit down, my mind was screaming.

"They are going to say something awful. They are afraid you're going to faint or fall down in horror. This seeking a chair thing is taking too long."

No one said a word until they found a chair they deemed clean enough for me to sit upon. Suddenly, I was thrust into a world about which I knew nothing. I was hearing fragments of sentences. Hit her head, bleeding in the brain, NO - wait, bleeding between the brain, swelling. It was the neurosurgical nurse practitioner who was speaking to me. The on call neurosurgeon was on his way to the hospital.

And here I stood, at yet another decision point. Standing at the foot of my mom's bed, it didn't take a rocket scientist to see the precarious situation she was in. The monitor recording her body temperature was still 93 degrees. I tried whispering in her ear. She opened her eyes, barely. I am told she was telling the EMT's her name and her date of birth as they were placing her on the stretcher. Credit the medical teams who've treated her over the years. Those of you in medicine and those of you wearing that bracelet know exactly what I mean. It embeds itself into our brains.

The neurosurgeon arrived. With a DNR in place, they wanted me to consent to surgery. Specifically, a craniotomy. They explained this had to be done immediately. There was a substantial subdural hematoma on the left side of her head. It shifted her brain slightly. As I was trying to engage my critical thinking, I knew I was not capable of making a well-informed decision. While I felt no pressure, what I knew was that there was a sense of urgency attached to my decision. We barely discussed the possible outcomes of such a surgery. All I could grasp in that very moment was the gravity of my mom's immediate health issues which, with this news, just became exponentially worse. What I should have said to this surgeon who, in very poor taste, opted to share, "Well, we're surgeons, we like to cut," was this. DO YOU SEE THE DNR above the monitors? As IF I'd consent to emergency surgery using an on-call doctor on a Saturday night - and yes, all of that was racing through my mind before he decided to share his love of cutting.

I remember the surgeon asking me if mom was experiencing pain in her upper spine. I recall his astonishment when I told him she complained of no pain. He explained, based upon the scans, he would have expected she would be in terrible pain from what he saw. Ultimately, I told him I could not consent to any surgery in that moment. I recall telling him I believed in her current condition with all of the other confounding factors, I didn't see how it would be possible for her to survive three hours or more under general anesthesia. I clearly remember saying that I felt I would be the one signing her death certificate if I consented to the surgery. I think I mumbled something about seeing how the present circumstances play out before I could even consider what might come next.

Many family members were milling around the waiting room of the hospital as I paced between the trauma area and the waiting room. Everyone was masked, everyone was maintaining distance in the primarily empty waiting room. At some point after 8PM, the shift changed in the waiting area and I presume, also in the trauma area. Until that point, when I asked to go check on mom, the desk knew I was already at her bedside and they unlocked the doors. Now, we were being told we could not remain indoors. I could insert something in here about continuity of care after a shift change ... because I watched this same thing happen when my dad died, but I'll save that for my advocacy efforts when speaking to those who are equipped to effect meaningful change to benefit all patients. On this day, everyone left and went into the parking lot. I asked to see her before leaving so I could get an update from the medical team. Instead, they had a nurse come out to speak to my brother and I. She came out, told us they were waiting for the results of her COVID test which would be approximately four hours, after which, they would be bringing her to the floor. Because of the DNR, she would not be taken to the ICU.

Mom was in a hospital that was piloting a program in NYS to allow for visitors. They instructed me who to call in the morning to find out where she was, and I would be called if anything else was required of me. Frankly, I was waiting for a call to tell me she was gone. I'm sure I didn't sleep at all. When I called in the morning, I was told she was in the cancer wing at the hospital. They put me through to the nurse in charge of her care. I told her that I already arranged for her records to be sent to them the night before from her primary oncology team at Memorial Sloan Kettering. I told her they were faxed over and of course, they weren't on the floor. I gave her the fax number the hospital asked to have them sent to. I don't remember when I did this, but I do know it was in that time before she arrived at the hospital, I notified the emergency number at MSK so they could assemble whatever information they felt the hospital would need. I would learn over the next days, MSK recently began a pilot program, too. They worked with a third party to serve as an information bridge. Mom's medical info was flowing bi-directionally between the community oncology group who has privileges in the hospital and the team at MSK. Every single afternoon, I got a call from a nurse at MSK to assure me they were updated on everything.

When I spoke to the nurse on Sunday, I explained there were three other siblings who wanted to see mom. I knew COVID restrictions only allowed for one visitor each day. There would be no swapping in and out. The nurse granted special visitation rights because her situation was critical. We all arrived at the same time. I had copies of the most recent sets of labs so they could see how everything had been trending over the past couple of weeks and I had a written report of a head CT done in June. I brought them with me. After the desk confirmed with the nurse that we would be allowed to tag in and out, I was the first one on the floor. I spoke to her nurse and gave her the records. She told me what was going on and then said I should go into mom's room. She told me I was going to be as shocked as she was, that from the early morning when we spoke until now, mom had woken up. She told me she was awake, "Just go in and see for yourself."

I walked into the room and mom was up in the bed with a food tray in front of her. Each of us had a million questions for the other. I was able to answer hers. She wasn't able to answer any of mine. She told me she opened her eyes and knew she was in the hospital but didn't remember how she got there. Does anyone know I'm here? How did I get here? Your brother is upstate ... I explained to her that she was brought in an ambulance. That seemed to stun her. I asked her if she remembered anything. It was clear she had no memory of falling. She didn't remember if she was in bed or in the recliner where she would often sit before getting into bed. I could see her doing mental gymnastics and I simply asked, "What is the last thing you remember doing yesterday?" When she couldn't recall, I let it go and when I went downstairs to switch with one of my siblings, I told them to gently try to discourage her if she started trying to press herself, to will herself, to remember what happened. My horror at the the thought of her lying on the floor for hours somehow dissipated knowing she wasn't there trying to grab for a phone, or perhaps was calling out for help. I know if we didn't have this conversation, my mind would be in a very dark place for many years. Grateful.

The resident in charge of her care came in and asked to speak with me in the hallway. I refused. I told her that it was clear my mom was lucid, understood where she was, and that she had the right to be involved in anything she wanted to say. My mom, at this point, didn't know about the DNR or, more importantly, about the head injury. I began. I told my mom she was in very bad shape the night before. I told her I signed a DNR. She looked confused. I told her, "Mom, if your heart stops, they aren't going to do anything to restart it. Is that what you still want? I can have them tear that up, but I need you to tell me what you want. Last night, you couldn't tell us." She just sort of shrugged and gave me no clear answer.

Then the resident explained she suffered a bleed in between her brain and her skull. I filled in the information as I could see she wasn't able to fully comprehend any of this. I told her we would talk to a neurosurgeon that afternoon and together, we would decide what to do. When the neurosurgical NP came into the room, I was downstairs. My sister was in the room. She asked the NP to let her get me on a FaceTime call. Instead, the NP told her to sit tight and she came downstairs to bring me up so both of us could be in the room with mom as she explained what would happen. We were told the bleeding seemed to have stopped and told us this was very much a day to day situation. She explained what surgery would entail in great detail and then suggested an option that was much better for mom to accept. We were all in agreement. In about three weeks, the blood would begin to break down, some would possibly be absorbed by her body and what remained could then be drained using a small burr hole.

Over the next ten days, we took turns visiting mom. She was awake. She was trying to eat. They were doing physical therapy. The community oncologist saw her daily. They were fighting to discharge her and we were pushing back on that. At one point, my mom was telling other siblings she wanted to go to a rehab facility. I got on the phone with her and very carefully explained that suggestion was simply not an option. I told her we couldn't ensure her safety from COVID in a rehab facility, and that she would have family and professional help round the clock in her home. She wasn't happy about aides in her home until I assured her many times that there would NEVER be a time one of us wasn't also there. Again, she mentioned going to rehab and then, she realized it would be within a nursing home. I didn't have to say another word. I'll refrain from political commentary on what happened in NYS nursing homes. You can google it, and whatever you find, multiply by about a million. I personally, know many who have loved ones in nursing homes. The stories are horrific. She said that simply wasn't an option in the midst of a pandemic. I once again reassured her that we, all of us, were prepared to man her home and oversee her care 24/7 with an aide to help us.

Plans were in place for her to be discharged. Until ... I got a call from the same resident who didn't want to speak in front of mom explaining she pulled the discharge. She began talking about an infection and I asked her to explain. She didn't which I found a bit bizarre so I began guessing. "Based on what you're saying, it's either unresolved sepsis or it's C-Diff." Ultimately, I had to get my answers by calling the nurse who confirmed they were waiting for the results of a C-Diff test which, of course, was positive. I explained to those who would be the designated daily visitor the protocols for gloves, gowns, masks (and changing the mask upon leaving the room). We continued to ready her home for mom's eventual discharge - hospital bed and other necessary equipment was delivered. I went to her home after ordering gowns, gloves, and preparing bleach solutions and safety instructions to get the place in order. I recall the day I walked out knowing everything was in place. I knew everything was in order and this fleeting thought popped into my head: She's not coming home. I shoved it out of my head.

She was weak. She couldn't get out of the bed without the help of two aides. She was barely eating. On October 12 and 13, I was the designated visitor. During my visit on the 13th, she seemed to be much more tired than she'd been since the day after her arrival. When I was leaving, I spoke to her nurse. It was the same nurse, as luck would have it, who was caring for her that first day on the floor. All I had to say to her was that she seemed worse than she was any of the days, including that first day. She ran into the room with me. They began to administer fluids and the following morning, things began to decline rapidly.

An interim head CT showed the bleed stopped, the area of blood was significantly less and already being reabsorbed, her brain shifted back, slightly, to its more normal position. The morning of Wednesday, October 14, my phone began to blow up. She sounds "off," she was on the phone with her cousin when the nurse took the phone to tell her she was going for another head CT. I immediately called the nurse. I remember someone saying something about not knowing results for 24 hours. I knew that wasn't the case, not with imaging where they could see in real time what was happening. I knew if this wasn't good news, I'd know immediately.

The same neurosurgical NP who was helping us understand what had happened the day after mom's admission got on the phone with me. All she was able to say was that the bleed started again and the neurosurgeon would be calling me shortly. I don't think I had to wait more than five minutes.

The neurosurgeon began explaining what was happening. In this moment, I was grateful for all of the advocacy work I've done. Somehow, I was able to detach myself from one of the most emotionally charged moments of my life. I willed myself to engage all of my critical thinking skills. I listened as the surgeon began to explain everything. He was kind. He was compassionate. He stopped frequently to ask if I needed anything explained. He was definitely speaking in more medical terms but I suspect that was because he already had a heads-up regarding my health literacy skills.

I asked about the risks involved with the surgery. I asked about the outcomes. It took me less than 30 seconds to realize there was substantial risk. If she survived the surgery, I could expect my mom to have her skull open for many days to allow the swelling to reduce. If she survived that, I could expect an extremely high likelihood she would not be able to speak, or feed herself, or walk. He was basing this information on the location and the size of the bleed. He was also, I would later learn, basing this on his previous experiences in situations with people whose condition closely mimicked my mom's. Without consulting anyone in my family, I made a decision. This was not the way my mom would have wanted to spend the rest of her days. That was clear on her health care proxy although I wouldn't see that until many days later. In what can only be described as hilarious, the documents I needed while she was still alive: the power of attorney and the health care proxy were sealed by mom with her will and the trust she set up. Sealed like Fort Knox with what appeared to be an entire roll of duct tape. I was making decisions based upon old documents. Thankfully, when I did wrangle that folder open, her instructions were more extensive and incorporated every decision I was forced to make. Grateful.

I also knew, in the back of my mind, what was coming, sooner than anyone else may have realized. She was down the rabbit hole with the progression of her cancer. What no one but me knew was this. I had seen a brain scan from less than a year ago where it indicated there was a 50% chance the lesions they saw on a head CT were indeed brain metastases. It was the wording: Consistent with, likely, possibly and each had an associated percentage. The word used on mom's CT was the word that meant 50%. For months after seeing that, I chose the glass half full view. That means it's 50% chance NOT. In this moment, I took the realistic view. Remembering the doctor asking about the area in her neck, remember her primary oncologist telling me he'd get her to her next birthday (this was end of October, her birthday would come in early March), watching others in the last weeks or months of disease navigating through excruciating bone pain, the need for oxygen, it was easy for me to say I didn't want them performing the surgery.

It was only AFTER I made the decision that the surgeon validated my choice. He told me, from the perspective of the family members who opted for this surgery on behalf of their loved ones, every one of them regretted their decision. They didn't fully assess what reality would be after the surgery.  He told me, particularly under the circumstances, "You made the most merciful decision FOR YOUR MOM." And that's the thing. I couldn't decide based upon what would make others happy. I had to give voice to my mom. What would she want and what he described is not what she would want.

Things moved very quickly over those next couple of hours. I was told that anyone who wanted to say goodbye should get there within the next 24 hours, and more likely, it would be best if they arrived within the next 12. "Things are going to deteriorate, and it's going to be rapid." I sent a group text - not the best means of communicating but certainly, in this instance, the most efficient. Immediate family converged on the hospital and thankfully, end of life protocols were in place and everyone was allowed in her room. She was barely conscious when I arrived. She willed herself to open her eyes when I told her one of her grandsons just came to see her. She greeted him by name. Then one final time when another grandson came. She opened her eyes, she looked at him and she said what would be her last words. "Hiya .... " and she greeted him by name. On the afternoon of October 14th, she uttered her last words and slipped into a peaceful slumber.

The next five days were torturous for all of us. Everyone that needed to be there was there. There were no tubes, there were no monitors beeping. She was surrounded by the love of family. It was explained to me that engaging the hospice team was possible but not recommended. There is some quirky thing with the Medicare rules. If the event she didn't die within a specified number of days, the hospital would be forced to move her to a facility. It could be any facility where there was an available bed. She was in a hospital that is five minutes from my new home and close enough to everyone else family, too. The facility might be an hour or more away. And, the visiting policy might not be as accommodating.

I knew it would be important to mom to receive the last sacrament of the Catholic Church. Her parish priest refused to come. I was livid. He personally knew my mom and she made many donations to the church right up until she fell. With the help of the hospital chaplain, she arranged for a priest from a different parish to be at my mom's beside within an hour of calling. I will be eternally grateful to the chaplain and the priest. With that off my head, I was thrust into a new role. Once again, I found myself using skills I'd learned "on paper" in a real world situation. I became the head of mom's hospice care.

Specifically, with the help of the social worker on the floor and the nursing staff including the nursing supervisor, I summoned everything I could from things I've learned along the way about end of life protocols. I encouraged everyone to speak to her. We stroked her arm gently so she might feel our physical presence. I wrote down each time morphine was administered so I could start asking them again at the three and a half hour mark. Only once did the girl at the desk push back with "It's too soon." Fortunately, the nursing supervisor happened to be at the desk and quickly overrode that response, telling her to call the doctor. I was determined my mom would be given morphine "on the clock."

She died just before 3PM on the 19th of October in the midst of the worst public health crisis. I was seated beside her. We were playing music as she drew her last breath. It was her music, doo-wop era music of the late 50's and early 60's. I didn't know what else to do. I didn't know why she was holding on after five days of being in a non-responsive state. I was holding her hand. She was in no pain. I kept telling her it was ok, I would be ok, Daddy is waiting for you, we will all be ok. For five long days. This day, her breathing was beginning to get shallow. I could see the end was near as her breathing began to slow. I am grateful she died while I was there. Had it happened in the middle of the night, I know they would have told me it was peaceful but in my mind, I suspect I would have gone down a dark hole. "Sure they're telling me it was peaceful, but she was alone and it all likelihood, she might have been gone for an hour or more before they even realized she was gone." So, yes, gratitude that I was at her side.

I suspect she knew the end was coming before she fell on that fated night. During one of our many conversations, she told me she didn't want a traditional mass. She wanted to be cremated. She wanted a graveside service. Her ashes would be interred with my dad, next to her brother, beside my dad's parents. She told me we could hold a memorial mass in her honor IF and when we wanted. So, I began making more decisions.

And, as I was making these decisions and funeral arrangements, yet another monkey wrench got thrown into the mix. Because hers was a death that was considered an accident, after the funeral director already removed her body, the medical examiner refused to sign off on the death certificate. The doctor at the hospital called. The funeral director called. Each explained that I would be called to the ME's office for a conversation. They were doing their job and thankfully, my emotions were sealed in a compartment. I wasn't angry. I wasn't upset. I was just numb and would jump through whatever hoops they asked of me so that I could lay my mom to rest. At one point, I remember looking up saying, "I hope you're getting a kick out of this, mom."

The Medical Examiner called me. She was kind but firm. "Tell me about your mom's health." I asked her where she wanted me to start and I remember her saying I should start at the very beginning and she would tell me if I should fast forward. So, I began, "In 1987 ...." and I told the whole story. The early diagnosis of cancer at 49 years old found on her first mammogram and methodically went through all of it concluding with what happened when we learned she was no longer responding to treatment in May and how those last ditch efforts just kept making her weaker and weaker. We spoke for at least an hour. At the end, she thanked me and said she would be releasing her.

Fortunately, NY and specifically, Long Island, was at one of the lowest COVID positivity rates when this happened. We were outdoors at the cemetery and there were restrictions on the number of people who could be at outdoor "events." But, I had no control over who knew about the service and when I arrived at her grave with the funeral director, I looked out at many groups of people standing in smaller groups. Everyone seemed to be in their own bubble of safety. Afterwards, I was able to piece together that there was about 80 people scattered around, standing in the pouring rain, as prayers were said and mom was laid to rest with my dad.

My brother began building a special garden on his property, a project he began during those five days in October and is an ongoing project. After she took her last breath, we were on a group text where he was sending pictures to all of us. The garden is beautiful. I told him I was going to order a stone but I had to think carefully about what should be etched on the stone. And then, I remembered. The song that was playing when mom drew her last breath would be perfect. I ordered the stone in October. It arrived in April.

We emptied her home and it was recently sold. Impulsively, as I left the closing, again, with COVID restrictions still in place, I was the only family member present, I realized I was very near the cemetery. I drove to her gravesite. When I was leaving, I was stunned at the exit as I was flipping around the radio stations to hear this blaring from my car speakers ...

It's impossible for me to NOT think she was watching over me as I put all of her affairs in order. So, every night when I see the moon shining down, I will forever remember my mom.

Not a single day goes by when I'm not thinking about her, missing her, grabbing the phone to call her. I have had the support of many of you and for that, yes, grateful beyond words.

Yesterday was eight months that she left this earth. And today is Father's Day. It has taken me this long to share all of these details and to say for certain, this will be the last post I will make.

My chemobrain is resolved.

My marriage is dissolved. Finally, and I'm happy and free.

My reconstructive implants have been redone - twice (November of 2019 when mom took care of me and redone in February of 2020 when I had lots of people jump in to help with my recovery).

I took back the only name that matters, the name I was born with.

I bought a new home and moved in right before the world as we know it came to a screeching halt.

And throughout all of that, I said goodbye to my mom with gratitude for the life she gave me and with even more gratitude for the way hers ended. On her terms. Without pain.

My mom and dad will always be the wind beneath my wings. With this blog, my mom was always my biggest cheerleader. So, it is fitting to say ....

With this post, I bid farewell to this chapter of my life. I'm still around - I'm on twitter, I'm on Facebook although I haven't checked that platform at all since right after I had to login to my mom's account, and my email address is on this page, too. I'm entrenched in research advocacy and I'll continue doing that for as long as I am able to add value at the tables where I am seated.

This blog was the vessel that opened up so many doors but those of you who read my rants, cheered with me, cried with me, laughed with me, got outraged alongside me. Each of you has carried me to this place where I can now officially turn the page and begin writing the next chapter. The blog needed closure and this homage to my mom seemed the best way to do just that.

Thank you all for helping me in ways you might never fully appreciate.

With love to all who find their way here,

Anne Marie 

xoxoxo

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I HAVE A SECRET ...

.... AND,

I've been in hiding with my secret since May 4, 2017.

How is it possible that I even remember the exact date??

Well, it goes something like this ...

Technically, it started in September of 2014. I received an email from someone asking me about chemobrain and my ongoing challenges. We went back and forth in a series of emails and then, I dropped the ball. Shocking? Not so much given all of the circumstances ...

Fast forward two and a half years ...

April 2017 ... Another email from the same person. It was in the midst of AACR 2017 followed immediately by a date at USC to do some work on CancerBase. Although I didn't know it at the time, those ten days would be the last time Lori and I were involved in any projects together. Then, I was off to the spring SWOG meeting. Throw in some divorce related nonsense, sprinkle in the move from a rental apartment to my condo which was in final renovation stages - and it was a recipe for a month of commotion - not necessarily a great combination when one's brain isn't firing on all cylinders. I was all over the place - literally and figuratively.

However, this time, I didn't drop the ball in my correspondence with David and his questions about my lingering, and at times, debilitating cognitive issues. We set up a video call and I was intrigued by the things he shared during our first conversation.

He offered to send me products he felt might be helpful. I agreed to take a look. A bit skeptical, yes, but desperate times called for desperate measures. I was at a point where I was ready to try adderall or provigil - both pharmaceutical products, either would be "off-label" use, both come with side-effects. I was finally untethered to the dreaded pill case. Just months earlier, I completed nearly ten years of femara and I was grateful to be done with the need for any sort of prescription drugs. Thus, there was lots of hesitation to seek out yet another medication.

Within days, a box arrived. The labels were on the bottles and lots of literature was included inside the package. They were nutritional supplements. Fully prepared to toss them aside if I saw anything that was over the top, yes, I was skeptical. I studied the materials he sent, looked at the ingredient labels to see if anything in the products was what I would consider to be a mega dose. I'm not one for vitamins or supplements in any dose so I wasn't about to start mega dosing anything. I put on my research advocate hat and began analyzing everything.

We spoke again and on May 4, I began taking the supplements. The only request David made was that I make an attempt to document anything I might notice - the good, the bad, the ugly. Just keep notes. I seem to recall thinking, "Notes of what? I can't remember to keep notes and even when I do, I have no earthly idea where those notes might end up - buried under a pile of other 'notes' ..."

I first realized something was different when I had to decipher a massive amount of paperwork. It need to be sorted through, analyzed, put in some sort of logical order for another person to be able to easily understand. I cleared a workspace and dumped reams of paper in front of me. I began sorting, analyzing, making notes, coding each batch of papers. Normally, when I began this type of project, I feel the anxiety begin to well up. There were times I would feel myself starting to shake, yes physically shake, because it was all too overwhelming. On this day, just weeks after starting the supplements, I intuitively went from one batch to the next. I don't know how long it took but I do know it had to be less than two hours. And I know this because I had a list of errands to run. The list involved running all over my new neighborhood with a mess of unrelated stuff. What began at noon at my counter concluded before 6PM.

The pile of papers was neatly organized complete with a master list on a single sheet of paper with numbered bullets. Every errand was done. A couple of hours later, I was sitting on the sofa, jolted by my brain screaming, "WTF??? What happened -- how did you do all of that today?"

Before the supplements, I tried everything. I enrolled in clinical studies evaluating brain games, exercise, sleep, mindfulness. You name it, I tried it. Nothing was helping me in the real world. Yes, I may have gotten better at the brain training but it wasn't translating over to helping me with my life activities. Yes, I'm conscious of the importance of sleep and I try to maintain a routine sleep schedule. Mostly, I'm successful and achieve a minimum of 7.5 hours of sleep. I practice yoga - the stretching helps and my instructor continues to incorporate mindfulness into my practice and during the practice, encourages me to remember the importance of connecting with my breathing. Despite every suggestion out there for cognitive improvement, and I faithfully stuck with every one of them, none helped with the real world situations that always arise on a daily basis. The real world is called life.

Those of you who know me well, also know I'm very involved in research advocacy. I don't know how or when the products I'm taking will be part of a research study. I speak to David and his wife, Michele on a fairly regular basis. There is a group of us who have been the "guinea pigs" - in a most unscientific fashion, just using our notes building a body of anecdotal evidence. We know cognitive issues are real. There is a growing push to understand why this happens so we can find ways to address these problems.

With so many different factors: type of cancer, drugs used, surgery and anesthesia, long term maintenance medications, normal aging ... there are many areas to explore. I know plenty of people in the research world who are doing just that. Many have put forth proof that the condition is real using brain imaging. And far too many are dismissive - some because they have no concrete solutions and others who choose to believe this massive disruptive fallout is a convenient excuse we might use because we *failed* to get things done. (Note to the latter group: we didn't FAIL. We either forgot or simply could not accomplish and our frustration with ourselves is bad enough - in other words, validate, don't criticize!)

Without going into all of the research, let's just leave it at this. Physiological differences continue to be observed in cancer patients. Cancer Related Cognitive Impairment is a phenomenon that stretches to persons who were not treated with chemotherapy but "chemobrain" seems to be the term that is most widely used.

So what's my secret? The supplements are "multi-targeted nutritional supplements" and they have helped me in ways I can't even describe. I won't speak for the other "guinea pigs" except to say most all of us feel like things are better. David, whose story and background can be found on his newly launched website chemobrain.com, is brilliant. He's conscientious about everything he does and was intent on improving on the products I've been taking, and then, making sure he put together a trio of products that makes sense and addresses brain health, vascular health and gut health. With a leap of faith, he decided to seek out the best and the brightest to manufacture the products and launch his own company.

This isn't intended to be an infomercial or a medical claim. This is simply me, sharing my personal experience. Will it work for you? I have no idea - I just know there's nothing else out there that was helpful or provided meaningful improvement for me until I started taking the supplements. David and I frequently talked about this: Could it be this simple? And his acknowledgement that it may not work for everyone but even if it works for a small percentage of people, that number would be substantial given the number of persons living post cancer treatment with cognitive difficulties.

As for my next steps, I'm determined to find someone - anyone - several someones in the research community who might be willing to study this to see if clinical findings and any biological markers or neurological imaging matches patient reported outcomes. We both know the way to do this is with a randomized study but those take lots of time and lots more money. David took a leap of faith by launching the products. I do know he would have preferred to have these rigorously studied first but life doesn't always play out the way any of us would prefer. Instead, he chose to take this leap of faith because he believes in the products and he genuinely wants to help those of us who might benefit.

Cancer treatment is grueling. Having to accept a "new normal" is a hard pill to swallow. I was far better at life with the "old normal" brain and that brain seems to be back.

MY DISCLOSURE:
I am not employed by TheChemobrainCompany and I have not received any compensation from David and/or Michele Salo or from their company in any capacity whatsoever.

David has been sending me the supplements at no cost to me for almost two years. In the spirit of full transparency and total honesty, I share that with all of you.

Last but not least, I will be on and off the grid a bit over the next couple of days - family issues and "stuff" that requires my physical presence. Comments will be responded to as soon as I possibly can. Meantime, please play nicely in our sandbox!


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It's Time #ToPreventBreastCancer

As my mom begins a new treatment protocol for metastatic breast cancer, I've frequently shared that I understand the need for research across the entire spectrum. Having "skin in the game" across a trajectory that spans from prevention of death, to prevention of progression, to prevention of metastatic disease in early stage patients and extending to prevention of breast cancer in its entirety, I've agreed to play a role as a judge with the Californial Breast Cancer Research Program (CBCRP) in their bold initiative to prevent breast cancer.

Please visit topreventbreastcancer.org to learn more. Submit your bold ideas and let's be the generation that moves this ball forward in a meaningful and effective way so that we might stop this disease in its tracks.

Quite simply, it's time.

Deadline for submissions, January 7, 2019, is just a month away. AND ... Advocates are encouraged and invited to submit their ideas.

Read more from the director of the program Dr. "Mhel" Kavanaugh-Lynch.

A quick overview:

• The Global Challenge to Prevent Breast Cancer is a competition designed to surface game-changing ideas to help launch an entirely new direction for breast cancer research — focused on primary prevention.
   
• This challenge, sponsored by CBCRP, invites researchers, advocates, and others interested in breast cancer prevention to participate.
   
• Winners will receive cash prizes, feedback from respected researchers, and the opportunity to present their idea to prominent leaders in the field. The most promising ideas will frame CBCRP’s future funding strategy and will be further developed in California with $15 million in grant funding from the program. 
   
• Despite significant advances in breast cancer treatment, people continue to be diagnosed with breast cancer at astounding rates — rates that have remained essentially unchanged over the past three decades.
   
• Of the approximately $2 billion spent on breast cancer research each year, less than ten percent is dedicated to prevention research. The opportunity for discovery is immense, and the time for breakthroughs is now. 

Know someone whose research is focused on primary prevention? Please DO share with them! I'd like to be up to my eyeballs reading submissions ...


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Complimentary V. Alternative Medicine: Yes, It's Different ...

First some definitions and then, a few thoughts.

Complementary:
Combining in such a way as to enhance or emphasize the qualities of each other or another.

Integrative:
Combining two or more things to form an effective unit or system.

Conventional:
Based on or in accordance with what is generally done and believed.

Alternative:
Relating to activities that depart from or challenge traditional norms.

Quite simplistically, Words Matter.

Quite personally speaking, we know what has been shown to be effective and we continue to seek better medications to treat the multitude of diseases that fall under the cancer umbrella. There is only one departure from conventional therapy that I believe in and that is participation in an approved clinical trial. Period. End of story. I am in the school of "Snake Oil Not Welcomed Here." That's my disclosure on my personal beliefs.

Last week, I was invited to attend the annual meeting for the Society of Integrative Oncology. The MD's and PhD's from world renowned cancer centers that presented their findings did so using the same scientific methods and with the same caveats that I've seen in presentations at meetings like AACR or the San Antonio Breast Cancer Symposium. The presentations from the podium in the sessions I attended were all randomized trials with control groups. Limitations of each study were clearly outlined. Many of the studies were designed using small groups of people. In almost, or possibly in every case, it was stated that the studies were exploratory in nature and that further studies using larger groups of people would be needed to confirm the findings or replicate the results. That's the way we learn in the world of science. Confirmation and replication are key components and each is essential to guide changes in practices.

Cancer treatment is grueling. Chemotherapy is poison. Radiation burns through tissue. Surgery cuts into our bodies. As we move toward precision medicine, plenty of therapies are more targeted for different patient populations but the promise of precision medicine for every cancer patient is still beyond our grasp. Specialized treatments like immunotherapy which are highly effective in certain sub-types of specific cancers like melanoma and lung cancer, have been shown to be highly effective in many, but in some, there may be serious complications with the treatment. Just listen to the television commercials, there's no shortage of those.

While in active treatment, many people suffer with debilitating side effects. Well beyond active treatment, many of us live with long term or late effects of the treatments we received with the hope of achieving the status of no evidence of disease. It is worthy to note that few treatments are truly curative and the word cure applies to even fewer cancer types. When a researcher states that the patients were treated with curative intent, that is simply a means of differentiating the stage of the cancer in the group of patients on the study.

Most of us have already gotten the memo on the importance of maintaining a healthy diet, the need for exercise, and the importance of sleep to help restore our bodies. Not enough of us, myself included, are able to stick to every aspect of each of these cornerstones but, speaking personally, I try. Not one presentation at this meeting even hinted at the notion that diet, exercise or sleep could prevent primary disease or stop progression of active disease, or prevent local or distant recurrences. No one I spoke with suggested, in any way, shape or form, that we use complementary therapies instead of conventional treatment.

The focus of the use of complementary therapies was as a means of assisting with quality of life issues experienced by so many of us. They were presented as a possible option to make our conventional treatments easier to tolerate allowing us to continue treatment for as long as recommended, or as a way of dealing with long term and late effects. Yes, acupuncture was presented in several of the sessions. Mind-body connections using yoga or other meditative methods was explored and presented. Any and every time, nutritional supplements were mentioned, caveats were included to clearly state that some could negatively impact the efficacy of conventional therapy and that every one brought up by a patient receiving any sort of active treatment should be thoroughly investigated by the treatment team to properly guide the patient.

It is particularly noteworthy to mention that in the studies I saw presented, the researchers showed not only patient reported outcomes using validated measures, but they also showed physiological changes in the things in our bodies that are believed to be driving some of what ails us. Without getting all science-y, the slides showed the same patients that reported symptom reduction in whatever was being looked at, a corresponding slide was presented to show, for example, a reduction in systemic inflammation within the body. Inflmmation is known to cause all sorts of problems.

Other physiological changes were reported and genetic markers were identified in different studies but rather than speak too far above my pay grade, it's best to leave that right there. Yes, that is a gross oversimplification but I am not an MD or a PhD. The point is this: they were able to measure and show a biological change in the body that correlated with what patients were reporting. As a patient interested in the preservation of quality of life in every cancer patient, along the entire disease trajectory, I was impressed by the comparison of what was being reported, the "real-world evidence" alongside biologically measurable observations.

Yet, I'm left with many questions. Why is there such a push-back from so many? Is it a lack of understanding, or the unwillingness to be open-minded about what this group of researchers is trying to accomplish. To disrupt the status quo with "unproven" and non-pharmacological approaches is, by many, referred to a quackery. I saw nothing that resembled quackery. I saw researchers sharing observations and I also saw some of the studies raised further questions worth exploring.

In one yoga study of particular interest to me given my issues with chemobrain, the findings seemed to indicate restorative yoga was a better option than yoga that included more movement. Again, during the presentation, the researcher very clearly outlined that the patients in this study were mostly sedintary breast cancer patients so the findings only applied to this particular subset of patients. AND, they observed that the quality of sleep in the group assigned to restorative yoga was significantly better leading to the statement that the slightly improved cognitive assessments in this group could be resulting from better sleep, not necessarily from the yoga practice, ending with, "more research must be done to answer the question."

In fact, the only thing that was suggested as a possible alternative to existing treatment was a session on pain management and reducing the use of opiods. Given the crisis with opiods, any alternative treatment that might prove effective, in my way of thinking, is a winning combination for a large number of people and addresses what has become a health crisis.

As I was writing this, I saw that ASCO released the results of their second annual National Cancer Opinion Survey and it's very disheartening. According to the press release, nearly 4 in ten Americans believe cancer can be "cured" solely using alternative therapies like enzymes and oxygen therapy, or with diet, exercise, vitamins and minerals. I haven't had the chance to read the entire report but I will. I'm not a fan of press releases. I'd rather read the methods and conclusions as written by those analyzing the findings. The publication is available for anyone to access.

The cure is not in a closet. There are plenty of nefarious characters out there, preying on people at what is likely the most vulnerable time in their lives, promising a cure using some outlandish treatment. Just. Don't. As for the so-called success stories touted by that cast of characters? The biology of cancer is complex and miracle cures, in my mind, could easily be explained as disease that was not aggressive or likely would never have killed the person to begin with. That's my position and that will remain my position, unless and until I am pointed to rigorous trials showing these "miraculous" outcomes in large cohorts of patients.

Bottom line: complementary care is not the same as alternative medicine. The acronym CAM (Complimentary and Alternative Medicine) is best replaced with CIM. Complementary Integrative Medicine seeks to help make conventional treatments more tolerable, enabling patients to finish full courses of therapy with the goal of helping us achieve the best possible outcomes using currently available, already proven to be effective conventional treatments. Alternative Medicine, for this patient and research advocate means unproven, and steer clear.

I just wish that those who so openly and unabashedly attack this entire area of medicine might begin to think a bit outside of the box and realize, patients matter. Management of side-effects matters. In this era patient-centered care, incorporating patient concerns and identifying as many ways as possible to address the concerns of patients is essential to achieve true and meaningful patient-centricity. It's not a buzzword. It's a call to action for both patients and providers, and it seems to me there is a large group of researchers answering that rallying cry. To those, I say thank you. To the detractors, I just make one respectful request. Don't lump everything into one bucket. Those who are researching complimentary care to help with quality of life fully and totally stand behind conventional treatments.

It's time for all of us to get on the same page.

If the words are troubling, attack the words ... not the methods or the outcomes or the questions being posed.

Note: I am closing the comments on this post because this seems to be a highly charged area and I'm not up for moderating the comments or getting into a debate. These are simply my observations. With utmost respect to all, please ... just take what resonates and leave the rest.

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Focusing Forward and Breaking Free of the Past

Every year, or maybe it's almost every year, I share the same post on this day but the times they are a'changin ...

September 19, 2006.

That was the day my body was forever altered, the day of my bilateral mastectomy. And this year, I am thinking about the ways in which my life changed as a direct result of a cancer diagnosis, the decisions that would come in the weeks and months after that first suspicious finding on my routine annual mammography, and the time after active treatment when I began to pick up the pieces and found myself first here, pouring out my heart and soul before a computer screen.

In a million years, I could never have expected the twists and turns my life would take as a direct result of hearing what has been referred to as the scariest word, bar none, in most, if not every language on the entire planet. Cancer.

There was the waiting. The waiting for the next set of tests, the waiting for the results of those tests, the waiting to see the next clinician in line, the anticipation of what might be said, could be said and in most cases, the reality of what I was told, which was almost always a thing I had not even considered. There is a lesson in there. It is a lesson for those currently in that place and really, a lesson that transcends cancer or any disease, to most every circumstance that life throws us.

As I sit today, more than twelve years after my date with two surgeons and countless of other medical professionals, I am different. I have grown. I am the woman I was always meant to be and yet, my life is still not my own.

I will be in Chicago next week, eager to roll up my sleeves at the SWOG meeting and to see so many of the people who mean so much to me. I will make a side trip to see a few of the people at the Lurie Cancer Center, some of whom I now work with, too. At the end of October, I'll be in Arizona for the Society of Integrative Oncology meeting where I was asked to address a group of advocates about how they might become more involved in research activities.

It's a bit humbling and depending upon what's happening, it can be time consuming. My writing has taken a back seat to more collaborative projects where the patient voice is essential and I'm happy to lend mine when invited. By the same token, I'm conscious of self-care and I strive to do my best to strike a proper balance. Constantly assessing the circumstances before committing to anything is a good tool. It helps prevent things from tumbling down on me while also making sure no emotion blind-sides me because I was too entrenched in a project to feel whatever I might be feeling in any given moment. I think that may have been one of my biggest take-aways from ...

this ...

...in June, I had the absolute joy to attend a Commonweal retreat in Bolinas thanks in very large part to the generosity of a donor. That was a life changing event and that is something that Lori haunted me about for years. I can still hear her, "Just get on the waiting list, you NEED this." As usual, she was right. The week was a gift to my mind, to my body, to my soul, to my spirit. I arrived knowing no one and left with a dozen people I am connected to on such a deep level. It's a sacred space, an immersive experience on so many levels and when I find myself frustrated with any sort of nonsense or minutiae, I let my mind go back to Bolinas and I can feel myself surrounded by unconditional love and support. Yes, it was that powerful. Times a million.

On the heels of the retreat, I was home for just a few days before heading out to Durango, Colorado where wildfires were still raging but the hero firefighters saved every structure and managed to contain what seemed like it would be impossible. That allowed Blueprints of Hope to move forward with a survivorship event planned many months prior, where I was invited to share my experiences with chemobrain issues to a group of cancer patients.

In the midst of all of this, life is still happening. Much of it is wonderful. Weddings, new babies, showers to celebrate these life milestones ... each one fills my heart with joy. Some of it is a bit stressful - health issues surrounding loved ones, and a few of my own, too. I can't control any of that. All I can do is be the best helper for those who want my assistance, and deal with my own pesky health issues as they arise.

And then, there is this divorce. I hesitate to even use the word or mention anything relating to that. I know my words are parsed, pulled out of context, and I suppose might be used to turn a simple statement into something that was never intended. My words are, quite frankly, just as they appear. There is no hidden meaning or the need for anyone to attempt that proverbial reading between the lines nonsense. Sooner or later, that chapter will close and there will be no more lawyers, no more court appearances, no more anything and that part of my life will be fully and completely erased. 

Emotionally, I am whole again. The reality is in the knowledge that I became whole and true to myself the moment I decided to exit what I now know was an unhealthy relationship that went on for decades. I made misguided choices along the way, but I don't look back with regret at any of them.

If I'm guilty of anything, it is being being true to those I makes promises to, even as I turned a blind eye to the obvious. My actions were borne of authenticity and genuine concern because that's who I am - and when I commit myself to someone or something, I'm all in. Until I'm not. And when that "I'm not" lightbulb illuminates, I learned a bit about myself. I can detach myself without anger or bitterness or any other self-defeating feelings. Just detach, devoid of emotion, moving pragmatically toward resolution.

Being exposed to so many different people from all over the country, I've learned the difference between being valued for who I am and what I bring to any table vs. being used by another. With eyes wide open, I can safely and perhaps a bit defiantly say "NEVER AGAIN."

Life is good. I am grateful for every moment whether I'm doing something in the realm of advocacy, practicing yoga (thank you Apple for adding it as a workout in the update on my watch!), celebrating those life milestones with loved ones, meeting friends, or simply relaxing in my home and the beautiful space right outside my door. The power of healing and the ability to ground me in every sense of the word that I get from the ocean which is always within my sight will never cease to amaze me. Recently, I was asked if I've come to take the vast and magnificent ocean views for granted. And without hestitating for a single second I stated that it's been nearly two years and I still gaze upon the glistening sea every single day with wide-eyed wonderment, and a ton of gratitude that this is my home and that is my backyard.

Yes, I finally learned to leave what my buddy Jack always referred to as that "big bag of shit you're carrying with you" in a box unless and until it requires my attention. Surrounded by ladybugs and dragonflies, feathers and butterflies, and random Neil Young songs popping on the radio, my spirit is sustained every single day by those no longer walking this earth. And then, there is an army of people, some quite close to home, others clear across the country, and yes, even a few sprinkled around the globe, encouraging me to continue walking this path, reminding me that I still have much to accomplish.

So, with a nod to Lady Gaga and Bradley Cooper as I eagerly await the release of the fourth remake of A Star is Born, I suppose I too, am far from the shallow now.    

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CLINICAL TRIALS: Should you, Could you, Will you?

May. National Cancer Research Month and having somehow morphed into a research geek, deeply passionate about the need to educate, to share what I've learned, and hopefully to dispel some of the things I hear, let's dig in.

First, a disclosure: This piece, presuming it is coherent and cohesive when complete, will be submitted to Clara Health's Patients Have Power Writing Contest. Yes, there will be prizes awarded and no, I don't expect to be the recipient of one of them.

However, I am *All In* with any initiative by any organization designed to shine a light on the need to help all of us understand that breakthroughs in medicine only happen through research, and research means conducting clinical trials. Above all else, clinical trials don't happen unless patients are stepping up to participate in trials for which they may be eligible.

Did you know, depending upon where you look for the information, a mere 3-5% of cancer patients participate in clinical trials? Let's look at the flip side. More than 90% of us may be walking around with answers locked inside our bodies which begs the question: "WHY?"

The truth is, there's no one simple answer. It's complicated. There is room for much improvement in every aspect of the process. A quick search on clinicaltrials.gov shows there are currently almost sixteen thousand trials across all diseases being studied that are currently recruiting, or are nearly ready to begin to recruit patients.

There's the first problem. How can any one doctor or office be expected to be fully versed on what trials might be appropriate for a particular patient? Then, if the trial is being conducted in a place that is outside of the doctor's office or institution, and presuming they are aware the trial is ongoing, would they suggest it as an option at the risk of having their patient seek treatment elsewhere? I have no answers but this is one place where an engaged patient, or a loved one acting on their behalf, might have impact.

Trolling through trials, however, is something most of us are not equipped to handle without assistance. It was years after my active treatment was over before I even learned that clinicaltrials.gov existed. The site was recently overhauled and it is now easier to fine tune the results but it's still an overwhelming process. With a host of other clinical trial matching services in play, there are other ways to search, but the space is still evolving making that a post for another day. The quickest answer I have for this, Just ASK. Don't wait for a red carpet rollout or a hand-engraved invitation, ask your medical provider if s/he knows of any ongoing trials, or if they don't personally know of any, ask how you might investigate on your own.

Having just made a suggestion, let's first acknowledge one thing: Disease Shock - as this leads directly to the next problem. When the word "cancer" is spoken, and you happen to be the person in whose body cancer has taken up residence, most of us become mentally crippled for a period of time as we attempt to navigate an emotional minefield that nothing can prepare us for. Speaking personally, when I showed up for my post-biopsy appointment in July of 2006, I knew. The night before the appointment, I just knew I was getting bad news the next morning. Knowing, and then hearing those words - anticipated fears now a reality, all I can say is that is akin to entering some sort of alternate universe.

I was armed with a list of questions. I asked none. I recall the doctor gently and kindly asking me with a bit of surprise if there was anything I wanted to ask her. Thankfully, my mom was beside me and she asked the most important questions about the immediate next steps. Not once did anyone in that room mention clinical trial participation as a treatment option. Even weeks later, at my first appointment with my oncologist when I learned I would need chemotherapy, I was still reeling and again, it was my mom and my very dear friend seated with me - taking notes and asking questions. Aside from asking if he was planning to test my tumor to help inform chemotherapy decisions using what was then newly available (Onco-Dx for the curious among you **), I was still in the cancer-mute phase. And again, participation in any sort of trial was never mentioned.

Fast forward, five years post-treatment: Early research findings were being presented at the annual San Antonio Breast Cancer Symposium. Watching from afar thanks to a lively twitter feed, I learned there was a trial for which I would have been eligible and one in which I know I would have participated. When I was finished with chemotherapy and the last big surgical procedure to have my temporary implants exchanged for the long lasting version was quickly approaching, I had a lengthy discussion with my oncologist regarding the need for medication for the next five to ten years. We discussed the risks and the benefits of each of the different drugs. My choice was a drug that is known to cause bone loss thus increasing the possibility of bone fracture. I clearly recall stating that I'd deal with a broken bone to reduce the risk of a cancer recurrence. The latter was terrifying. The former, in my mind, was just a plaster cast.

He never told me there was an open trial, currently recruiting patients just like me. The site of this particular trial was at a neighboring institution, just miles away from the hospital where I was being treated. The trial was designed to see if the addition of a second drug, already widely in use, would help mitigate problems associated with bone loss frequently seen in patients on certain post-chemotherapy medications including the drug we had decided was the best option for my circumstances. In the course of the study which I only learned of years later and did not participate in, there was an unexpected and far more important benefit observed by the research team. While the primary aim of the study was to assess whether this helped prevent bone loss and then, seeing how this may (or may not) have helped minimize fractures, they saw a reduction in the spread of cancer to the bones in the patients who began receiving this "add-on" treatment. It was an unanticipated finding and one that was a pretty big deal. Because of that observation, new studies have since been developed and are ongoing to validate those observations.

And what happened to me? Well, I had to fight to have this medication administered. Medically and technically, it is to address my ongoing bone deterioration. It is approved for use in osteopenia which, for the record, I was diagnosed with before I learned of my cancer. Had I been asked if I wanted to learn more about a possible study, I know I would have said yes. If I were more savvy, I would have been searching for possible trials, even though my cancer was found early.

I never asked, and no one on my treatment team ever uttered the words "clinical trial." Back then, I don't even know what I grasped of the research landscape. I'm sure, like so many still believe, enrolling in a clinical trial is the proverbial Hail Mary pass: Participating in research is only for those who've run out of all approved treatment options. Not.True. (Mostly Not.True.) Ditto that all too familiar phrase uttered by many, "I don't want to be a guinea pig!" or "What if I get stuck on the 'sugar pill'?" both of which are typical and understandable statements. Until we understand.

The single most important piece of the clinical trial process? Informed consent or, in a far more patient-focused world, I prefer to call this educated consent. That language makes it crystal clear that true understanding is at the very heart of any, every and all decisions along the entire process that may lead us to choose to participate in a clinical trial. What are the risks of participating? What exactly are you planning to do to my body? Who's paying for it? How much time will this require above my normal visit schedule? Center Watch takes an in-depth look and provides a plain language explanation of clinical trials and the different phases, informed consent and contains a wealth of additional information. It's worth the trip.

Technically, we are adding to a body of knowledge so in a sense, personally, I have no problem referring to myself as a lab rat. We may derive a benefit, we may not. Here's the thing and it's something that is a critical piece of this entire landscape. When there is a treatment that is known to be the best (or, in plenty of cases when there are a number of approved options) for any given disease, it cannot and will not be withheld. There are so many rules and regulations in place to protect the safety of everyone who chooses a clinical trial as a treatment option.

So, are you really a guinea pig? Not so much. The research and clinical community is generally studying things like adding a new drug to combine with the drug that you are likely already taking. Or, they may be studying things like increasing the dose. In both of these cases, they are trying to determine if a different dose or the addition of a new drug works better than what you are currently on. Said another way, they are *not* taking away what works - that would be unethical and it's simply not done. Even in those for whom there is no available treatment option, still, they aren't taking away anything. Sadly, there are too many subsets of patients who've run out of all treatments or who never had any available treatments to begin with. They are seeing if they can make the drug work better (or at all), or attempting to reduce side effects, to extend life, to preserve or improve quality of life. Admittedly, that's a gross oversimplification but that's the broad overview.

If some people are going to be on the real drug and others are going to be on a placebo (aka, the dreaded "sugar pill"), should you really care? Well, if that's what's stopping you here's a thought. If you participate you have a 50/50 shot of real drug vs. placebo. If you don't participate you have a zero shot of getting anything new or novel or in the best possible case, a breakthrough. And while I can't state with certainty how frequently this happens, if the research team sees a group of patients on the trial with what appears to be exceptional responses, the trial will be "unblinded" and everyone will be offered the real deal. What else happens? The rest of us, those not on the trial at all, now have to wait, likely years, for the findings to be presented, for the FDA to approve the drug while those of us who didn't want to be the guinea pig or risk being assigned to the placebo get to sit on the sidelines, spectators to what could be the next big thing.

As researchers and clinicians are now well beyond simply utilizing different treatment options and are looking at the characteristics of so many diseases and the interaction with other things happening in our bodies to understand things well beyond my pay grade, I'm hopeful we are at a true inflection point.

Precision medicine is not merely a buzzword. It holds the promise of allowing our clinicians to administer the best available medication in the most effective and tolerated dose, to the right patient, at the right time with the hope of delivering care that will afford the best outcome for each patient. Fulfilling the promise of precision medicine starts with the most basic science. It starts with tissue or fluid donation and continues along the entire trajectory to using new compounds or combinations of drugs, or reducing/increasing dosages, or even changing the dosing intervals. All of this requires rigorous testing before changes are made.

Researchers have ideas. They fight for funding. They develop trials along the entire trajectory - from "first in human" small studies to large post-approval observational studies to determine what is experienced outside of the controlled conditions in the lab to make real-world observations. None of their work can succeed without our clinical partners speaking with us about all of the available options. We must be willing to listen and carefully weigh every option. A substantial percentage of clinical trials are closed each year. They must meet accrual goals within a specified time frame. Closing a trial after successfully obtaining funding, getting the necessary pre-trial approvals in place and then expending funds to set up the lab is a lost opportunity to learn something. The loss of the money used to put everything in place troubles me - the money is gone forever and unless someone finds a way to begin growing a magic money tree, those were precious research dollars. Wasted. And tragic. While I can't provide an amount, I do know it's substantial. Add up the losses and then subtract from the already strapped funding circumstances and we have one of those dreaded "situations," that I do think can be resolved.

I submit that a rigorous examination of trials that were forced to close because of accrual/retention failure as a means to understanding what happened, in its entirety, with the hope of identifying the barriers and finding possible ways to address the problems. Was the eligibility to participate too narrow and if so, could it have been broadened? Perhaps the question being addressed wasn't one that was important to the target group of potential study participants? Maybe the requests being made of the participants were simply too burdensome? Or was it as I mentioned before: the failure to accrue (and/or keep people on the study) was the result of a communication gap; somehow the trial was lost in transition between the lab to the clinic, the clinical to potential, eligible patients. Scientist are the idea experts, determining which questions they believe must be answered to achieve better outcomes for patients. Regulators make sure every "i" is dotted, "t" is crossed. Aligning the goals and expectations of all by including patients in every part of the process may be one way to help mitigate this problem. While I'm on this soapbox, addressing concerns unique to all underrepresented ethnic and minority groups in culturally appropriate ways, might afford more diverse participation, with findings that prove to be much more robust and more accurately reflect nuances across all patient populations.

Clinical trials aren't for everyone but I have to believe, at least in the cancer space, the percentage is far higher than what we are seeing. I do think many more than 5% are willing to step up. While trials are designed with little wiggle room for switching things up, it is important for everyone to remember, simply because you decided to step up for a trial, you can change your mind. You control you and at any point, you are free to voluntarily withdraw from any trial and continue treatment using already approved drugs.

The bonus add on? You will be monitored closely. In fact, the likelihood is that you will be monitored far more closely than you would be if you are not part of a trial. The trial team may determine you must come off the trial if they observe things that are detrimental to you. In a perfect world, the criteria for eligibility should be expanded whenever possible-and that is an area in which I am currently lending my voice for the benefit of the widest possible group of patients. Without getting all science-y, adaptive clinical trials are being used to do just as its name suggests - adapt the trial to the what is being observed in patients by the research team. The I-SPY trials are a great example of this.

We're all in the same ballpark but each of us is standing on a different base. The clinicians are on their base, the researchers on another base, and we, the patients, are on yet another. It's time for everyone to bridge those bases, to begin communicating in ways each may hear and understand so we can hit this out of the park: For ourselves, for the possible benefit of at-risk family members, and for the greater good of all.

(Post script: to the cynics, the skeptics, those who continually insist "the cure is in the closet," you could be right and this may be true. The problem? Until we open the closet door and study what's inside, it will remain in that dark closet with the door firmly shut.)

**As if by magic, recent findings from a landmark trial using Onco-Dx to inform chemotherapy decisions were just presented at the annual ASCO meeting in Chicago. The findings from the TAILORx trial have been splashed all over the media and this is a big deal. The findings will spare many from overtreatment but the key take away for the purpose of this post: a big thank you to the 10K+ women who stepped up to help answer a big question for the rest of us!


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