Mom died 69 days ago.

I thought longer than I care to admit about how to phrase that. Mom left us 69 days ago? Mom high tailed it to heaven 69 days ago? Mom changed forms 68 days ago? Mom spontaneously combusted 69 days ago?

Nothing seems right, or appropriate. 

It is amazing what a gaping hole 69 days brings. It is amazing how completely chuck full of Her 69 days have been.

We were supposed to be ready for that day, and as much as we thought we were, we weren’t. I think of so many friends who have lost parents in the last year or few, and I remind myself that we were so lucky to be afforded goodbye, however rushed, tragic, beautiful, and final. I find solace in knowing, you always wish, even in the most unhealthy of situations, you could have said that one thing.

I see you: her friends, her people, everywhere. It is wonderful and awkward and exceptionally difficult, and a quiet and beautiful reminder of her steadfast presence. I dive behind a grocery store display hiding my tears from you, and I leap into your arms at the difficulty and shared awfulness of doing this life without her.  Many of you see me, remember her, and burst into your own symphony of tears. I’m used to it now, and rest assured; it is still better than saying, doing nothing. It gets us both somewhere. I still cannot see my own tears coming, eight months practiced.

We hear again and again and again: “It was just so fast, I thought I would have another chance to tell her I loved her, to say goodbye….” 

To you, I say this: it was fast. Even sitting daily in the midst of all that cancer; growing, taking things over, making her and all of us crazy and aligned and desperate and simultaneously retreating and lockstep… it ended in retrospect in much the same way it started, startlingly, astoundingly fast.

It ended so fast the Hospice Case Worker wept in our kitchen, upon rushing to the house to find Mom doubled over in pain, completely blind.

To you, I bear the responsibility of sharing so much, and for the past 68 days, I turned inward and left you all hanging, not knowing the answer to the inevitable, “what happened?”

Mom died.

It is our humanness that asks the ‘how’ and ‘what’ and ‘why’ questions; our desire to simultaneously understand that which will never be understood and to allow forgiveness or peace for missing a final moment, speaking our truth, saying farewell. To you, I know deep in my guts: Mom would desperately want you who feel cheated at goodbye to know: she left on exactly her terms, 24 short hours after proclaiming she was ready, and done here. And you did everything you could.

Thanksgiving (November 28) was a good day. She joked that she ate collectively more in one meal than she had in six months. Her vision blurred. We carried on a deep, fulfilling conversation until she needed rest. Soemthing shifted toward peace in her head that night, yet I wasn’t sure how, or what.

Her sister Sally arrived shortly after I left to spend the night; it was among her least eventful. And then, at 6 am, it suddenly wasn’t.

I slept hard that night, easily the longest, hardest stretch of sleep I’d had since diagnosis day. I awoke to sun streaming in our bedroom window, flipped over my phone to check the time and saw many missed calls. In a complete panic, I threw on some sweats, and rushed there. It was 8:45 am. Mom was completely blind and paralyzed along her right side; her eyes greyed over and completely empty, like she’d suffered cataracts for years. She was in so much pain she begged Sally to rip into her morphine. Sally made a heroic and largely successful effort at keeping her out of a complete panic, until I arrived.

I put my hands in hers, told her I was there. She wanted to know exactly where. I placed her hands on my cheeks. She cried, told me she loved me, and apologized again and again for this; for it being this way, me caring for her.  She repeated over and over, she was ready, I needed to, “get her out of here.”

We began immediately between desperate calls to Hospice what is now a blur of morphine, anti nausea meds, violent retching, trying to adjust what was left of her human form to comfort, and entertaining a parade of relatives including her Dad, as they said goodbye.

It was frantic, painful, desperate, indescribable, and awful. We could not keep up with her pain; we could not get the morphine in her quickly enough to bring her any level of comfort. 

I talked to her in between morphine doses about going back on our plan of her passing at home, and instead heading to Hospice House so they could help keep her comfortable. She agreed. I asked her to tell Dad, and when they arrived, my siblings. She did. In the few precious seconds between doses when the morphine worked its magic, we laughed. She cracked jokes; my pants were on backwards, she needed a BigMac.

Those moments now, are the ones I cling to. It will prove cathartic writing, and then releasing the rest.

We arranged her transfer, and Cale pulled in the driveway, the ambulance behind him. She wanted all her kids home before she left. We were able to briefly make that happen, and Cale rode alongside her.

She was admitted around 12:30, November 29, and on her way to being fully sedated and comfortable by 2 pm. Every grandchild had a moment alone with her, to say goodbye.

At 9 pm that night, our nurse approached as I was having a particularly weepy moment bedside, and said that if we elected to do so, we could back off her morphine. She explained that while it would likely be painful for Mom, if it could be beneficial emotionally for us, and if we felt the need to do so, we could elect to decrease the drip in an attempt at stealing a few more lucid moments.

Knowing where we’d been only a few short hours before, I immediately said no, to please keep her comfortable. Ten minutes later I second guessed myself and shared that with Dad and my siblings, and all their initial reactions matched mine. 

We traded spaces at her bedside until morning, counting respirations, swabbing her mouth, laughing at her chomping at the sponge, talking to her, and intermittently pretending to sleep. We all wound up stuffed at her bedside by morning, caressing, and encouraging her transition. Her respirations had not changed all night, and yet as I rubbed her legs, I suddenly knew much of her was suddenly gone. At that exact moment, Cale verbalized the same: she’s going now. Her breathing slowed significantly and then there was nothing. Until there was a huge, gasping breath. And another. As she inhaled the second time, her eyes popped open. They were full of color, grey cataract eyes gone. She scanned the room, turned, locked eyes with Cale, and was gone. The flock of birds congregating around the feeders outside her window flew off.

Hindsight, retrospect, desperation for understanding, lead me to hypothesize Mom had a stroke. Strokes, blindness, paralysis were all potential side effects from her last drug, but she also had a brain aneurism discovered a year prior.

I do know this: whatever it was, allowed her to transition quickly. That feels now even 68 days later in this sea of quickly changing emotions, still feeling a lot more blessing than curse.

Living here without her is a balancing act of channeling her presence, thoughts, disposition in moments and conversations, looking sometimes desperately for signs, and a deep hallow emptiness that feels like surely she’s just vanished, and up and left us here alone. 

I feel connected and sane when I choose to believe she would never leave us here, especially now. I feel something teetering perilously between anger and nothing in the waning moments I believe she did. When I wrap myself in the luxury of her showing up in a sunset, a flock of cardinals outside my kitchen window, sending her people in for a hug at just the right time, or hearing her voice come out as mine in direction to my kid; somehow one foot continues to plod along the other, and some days, laughter even finds me.


At some point in the near future, I will shut down and archive this site. I will continue to write and post to my personal website: www.alisonmdoyle.com/blog for those of you interested in following along.

We have mailed literally thousands of thank you cards for everything from meals, plants, to memorials, to 5K contributions. If you have yet to receive yours, it is entirely possible that we had trouble locating your address, or something was returned. If you are among this small handful of folks, I extend my sincere apologies, and many, many thanks. While the process has strung out over the course of two (plus six) months and underscored with each stamp, address, message just how many of you Mom touched, I am finding it necessary to publicly declare this task complete as best I can possibly muster.

And finally, for those of you following along the Avastin insurance reimbursement saga, we are still not so patiently awaiting final billing and confirmations/denials.

I am also desperately chasing Mom’s medical records from a practice she received treatment from in West Des Moines prior to her diagnosis. If anyone has any good ideas on how to get those, short of hiring an attorney and going to court, I’d appreciate it if you could send me a message. I have filled out and presented all the necessary paperwork multiple times and have been following up weekly to no response/avail.

November 30: Day 183

Yesterday morning, her body wracked with insurmountable pain and completely blind, Mom grabbed my hands in hers, drew me in close and said, "Get me out of here, I'm ready." 

She took her final labored breath this morning at around 10:30 am at Israel Hospice House, surrounded by those she loved. We could not feel more indebted to the staff and all of those who make the Israel Hospice House and the entire Homeward Hospice organization possible. Their compassion and care made Mom's transition painless and very peaceful. 

I will fill in remaining details later, but at the moment we are grateful, humbled, a little numb, and all feeling very much without our net. 

Mom's Celebration of Life will be 3 pm Wednesday at the First United Methodist Church in Ames. Adams Funeral Home is in charge of arrangements. 

A private burial will take place Wednesday morning at 11 am at the Williams Cemetery. 

November 25: Day 178

The CT showed Thursday that the Avastin simply did not have the result we hoped. Nearly six months from diagnosis day, all treatment options have run their course. The liver cancer is worse, how much worse is difficult to tell as the borders of the cancer are difficult to discern/define. The liver cancer in the lungs has also progressed. 

There was a substantial amount of fluid that showed up on the CT this time also, so Dr. Otteman drained a fair amount of that out, which should give Mom a bit of relief. The hole continued to drain fluid throughout the weekend, which is good, as it is far better to drain outside the body than inside. She will likely need this procedure done again as the hole will heal and the fluid will again accumulate. 

We are somewhat hopeful that now that Mom is off all of the cancer drugs, she will have a period of feeling at least a tad better (if even for a short time) as all of the side effects from those drugs subside. That said, she is, for the most part, confining herself to the home as she has lost a good amount of mobility. 

For those of you keeping track, on May 30, the AFP tumor marker sat at 16,668. We saw that number dip with the use of the Nexavar throughout the summer (into the 12,000s) and then it shot back up. October 31, that number was 37,145 and November 14, 40,374. 

There are some other liver function numbers that the Drs look at, and at the moment, most of those look okay, meaning the liver is still functioning, albeit not on all cylinders as this is why we have the fluid accumulating in the abdominal cavity. Simply put, the liver is compromised by the tumors pressing on the portal vein and just taking up real estate in other areas and while it still works, it cannot keep up. 

We are now engaging the services of the amazing hospice organization and this will help a great deal with coordinating care from the various agencies as we try to keep Mom comfortable. Mom's goal is to remain in the home, and we will do everything we can to help with that. Dr. Otteman said that nearly 90% of the people who wish to remain in the home are able to do so, but we are trying hard to not be attached to any one outcome. 

All that news aside, tis the season, and we have so very, very much to be thankful for. Mom has lived with all three children and all six grandchildren within a stone's throw nearly their entire lives, something I have often reminded her that these days is virtually unheard of. 

Rather than feeling shorted for the time we will not get, I continue to find myself in awe and grateful for the time we have. The amazing influence Mom's care will forever imprint upon our kids as they grow through their formative years will continue to ripple outward, much as it has with each of us as parents, and also for the teachers and kids she worked with at Fellows: if only we all could claim such a legacy!  

I keep going back to a line Dan Woodin wrote months ago on his Facebook page. He lamented that we tend to sit around after such a diagnosis and ask ourselves, "Why me?" and yet, the real question we should all ask ourselves, is, "Why NOT me?" 

It struck me deeply when I read it, as somehow, before cancer takes up residence in someone very close, our nature seems that we tend to live in a state of blissful ignorance; somehow believing we are strangely immune. Then it knocks and we realize, we quite simply, are not unlike everyone else. 

There is great wisdom in learning to live with "Why NOT me?" instead of living "Why me?" and it transfers seamlessly to virtually every aspect of life. Cancer does not discriminate good from bad, it just is. How we choose to live with cancer or ultimately die with cancer (or whatever other obstacle) is truly the only thing we can control. Choosing immense gratitude for the wisdom, the gifts left in the wake of the tornado that ripped through our family these past six months, seems virtually the only option. 

Our birth and 'chosen' families continue to surround and lift up each of us, and we are blessed by countless acts of generosity, kindness and support from so many of you again and again. It is overwhelming to even type that without being overcome with emotion. 

I will do my best to continue updates, as I know many of you are following along from afar. 

Enjoy this week of Thanksgiving. 
In Abundant Gratitude,


November 19: Day 172

Our greatest fears lie in anticipation. When those fears are coupled with a death sentence, a timeline, a diagnosis, a set of circumstances, the fear can take on a life of its own. This is cancer. 

Mom started this journey feeling crappy. Turns out, 'that' crappy was nothing compared to this crappy. She started out with a diagnosis. 'That' diagnosis carried with it a tragic finality and was defined; but it's always the anticipation of the next slip or physical decline that packs a far heavier punch. This is cancer.

We are quickly reaching a point where we find ourselves asking Mom, what quality of life she has in a particular moment, hour, day, and what we can do to continue to provide her with some more of that. Increasingly, she doesn't know.

We know from the diagnosis, the Google searches, the incessant questioning of doctors, second opinions, message boards what's coming, but still cancer has a strange way of consuming everything and yet also creeping up on you. It shows up when the walks one day become shorter even though the air is probably thicker, the inability to get from place to place becomes harder but the car is farther and yet we're also searching for a wheelchair, the legs feel too heavy and then won't just move on their own, the naps drag out and then the bed is in the living room, the conviction of the voice leaves and it appears my Grandma's creeped in. 

The physical deterioration slides in and sneaks up, even as you watch closely. And yet, peering back only a month, and it seems so much brighter there; even though the grim reality never really looked all that great then either. Again, cancer.

The primal aspect of our humanness hangs on, continues to fight, and yet, in the middle of all of this disease, all this fear, it seems the only answer lies in letting go. Not to be mistaken for giving up as the two are so unfairly intertwined, but indeed, in letting go. It is only in letting go, that there is peace, presence, no cancer, acceptance, stillness. We still play our best hand, we still fight like hell, we put all the right pieces in place, but we also let go. It is only here that we can begin to ponder that there might just be something far better ahead than that which we may leave behind. The body's ultimate failing might just be the only vehicle that can effectively carry that message, given how awesome life is here.


Thursday (Nov 14) marked the fourth infusion of Avastin, Dr. Karwal's trial (for liver cancer) drug. Ideally and yet improbably, four infusions in, Mom's condition would improve. We'd march on, continue the infusions. Except, four infusions in, her condition is deteriorating fairly quickly. Given the decline, the question becomes, is the drug making her sick, or is the cancer making her sick(er)? Or both? 

The accumulation of both the Nexavar and now the Avastin do bring with them some side effects, although both drugs are typically fairly low on the totem pole of awfulness, as far as cancer drugs go. So Thursday, Dr. Otteman will do another CT and evaluate where to go from here. 

If the CT shows that the cancer is still stabilized/not growing, a decision will be weighed over whether the side effects and physical decline are worth continuing. If the CT shows that the cancer is growing, that means the Avastin is not working, and we will discontinue infusions. At that point, the road forks and the focus becomes ensuring Mom is comfortable and as pain free as possible. 

Today, we let go...and take a long, deep inhale of this gorgeous sunny, crisp, November day. We continue to lean in on so many of you (and will even more in the coming days). We are forever indebted, grateful, and in awe.