Sunday, June 20, 2021

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 


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