Tuesday, July 9, 2013

Megan's Pink Blog

In Megan's words:  I was diagnosed with Stage IIb cancer on April 9th, 2008, and my treatment began soon afterward. There is so much to tell and there are so many people to tell it to, so I thought this was the best way to do it.

Megan Lally lost her battle to breast cancer on September 1, 2011 at 30 years old.

If you've found your way to this blog, please consider running, walking, volunteering, donating or otherwise supporting the Run Like an Antelope Memorial 5K Run for Megan in Worcester, MA.  All proceeds benefit breast cancer research in memory of Megan.

Please consider starting at the beginning of Megan's Pink Blog, too, and read her entire inspiring, courageous and ultimately heart-breaking story. 
Megan's brave and candid story has become a source of inspiration for countless others. In a time when Megan could have easily withdrawn, she let her beautiful sense of humor, creative frankness and descriptive story-telling inform and comfort all.

Sunday, April 13, 2008 - How it all began


Thursday, February 9, 2012

Fraying Bits of Twine

It was now Wednesday. Daisy came to check on Megan again that morning. After examining her and asking many questions of us, Daisy now indicated that Megan's time was nearing an end. Although Megan was still eating and drinking some, her blood pressure was lowering and heart-rate was increasing. The splotching in her feet was now accompanied by cold finger tips and toes. She was still swallowing OK, but admittedly this had gotten more difficult for Megan, too.

When pressed to clarify, Daisy said she thought it would happen in the next couple days. We agreed to halt all other drugs except those intended to aid in comfort. Pain medications, anti-anxiety and similar would be continued, the remaining antibiotics had been discontinued earlier in the week, and the lactulose and lasix would be halted immediately. They offered no perceivable benefit at this time, and were difficult for Megan to consume and even harmful to her body and level of comfort.

When Daisy left she reiterated some instructions that we'd received earlier in the week: Be aware of some of the medicines in the 'comfort pack' provided by the hospice team. Don't hesitate to call for anything, especially if new symptoms arise. She then told us all that we were doing a great job and went on her way.

I would imagine in her training, Daisy was encouraged to offer this exact kind of feedback and encouragement she had been sharing with us. I was very thankful for that because I had never been more scared in my entire life and needed to hear and cling to any bit of encouragement that I could. Any indication that this was going "well", whatever-the-hell-that means, was exactly what I needed to hear as she went on her way.

At one point that day when only immediate family were around, Bill suddenly rounded everyone up and decided they should all go for some ice-cream. For the first time since before Megan's stay at the hospital, we found ourselves all alone in our home. I was immediately brought back to our serious conversation in the hospital. There was so much more that I wanted to say, but this time things were so different. Our conversation was labored, but Megan and I had each others undivided attention, and Megan was able to respond with perfectly placed nods, smiles and "I Love You, too" replies. I knew we were still communicating even if I was the one doing most of the talking. I crawled into the hospice bed with Megan and we held each other and continued to talk until the ice-cream trip was complete.

Many friends and family members came to visit that day and into the night. As had been the trend, it seemed with each visit that Megan got a little more inactive or even slept. Still, many loved ones were able to share time with her again and I know Megan appreciated that. There were still many smiles that made that obvious.

Later that night Megan stirred and sat forward. Exasperated, though with seemingly complete lucidity, she exclaimed "I Just want to be normal!"

Of course, we were all immediately on the edge of our seats or next to Megan to figure out exactly what she wanted.

"What can we do to make you feel normal?"

Megan was quiet again, and so we offered some suggestions. "What is more normal than watching some TV?"

Megan nodded and then Jocelyn suggested Jersey Shore and Megan nodded again, even more excitedly. And so, Mom Gray, Mom Lally, Joceyln, Megan and I all sat down and watched an episode of Jersey Shore. After we shared some much-needed laughs at the expense of those guidos and guidettes (and who wouldn't feel normal after watching that?), we agreed that I would spend the night with Megan from midnight onward, and in the meantime should retire to my bed for the next couple hours.

Once again, I kissed Megan, wished her all my love and retreated to our bedroom for what was probably some overdue sleep.

Sunday, November 20, 2011

I Can't Forget to Turn the Earth

Tuesday brought with it a beautiful, clear, blue sky and a bright-yellow August sun. We found ourselves on our beloved porch again, but there were many things that distinguished this trip from our prior visit just two days before.

Megan’s strength was deteriorating rapidly. We had taken our final last dance a day before. Megan now needed to be helped to a wheel chair to make the approximately 14-feet trip to the porch from the hospice bed in our living room. Once there, I stood behind her and caressed her head, as I steadied her now-weak neck, so that she could look ahead at our neighborhood and admire our porch.

Earlier today Megan’s feet began developing splotches of blue. I knew this meant her circulatory system was having trouble getting oxygen to all her extremities. We frantically massaged her feet in an effort to encourage blood flow and saw an improvement in skin color. Daisy later told us that the coloring was normal at this point in Megan’s care, and that our massage was actually not a good idea as it could ultimately result in the dislodging of a blood clot that could race through Megan’s body, and potentially cause an embolism. Fortunately this did not happen, but this was a difficult reminder of how severe Megan’s condition was, and that we needed to be mindful of so much and rely on the hospice assistance.

The Lactulose was now working. It was working too well. Megan’s deteriorating strength made this more difficult and ultimately this drug would prove to be an exercise in futility. Her cognitive ability only deterioated, and the expedition in bodily function ultimately contributed to distress in Megan’s last days. As we would roll, and reposition and clean Megan, each towel-stroke or touch began leaving bruises, no matter how gentle we tried to be. Megan’s body was shutting down.

As the sun shown down on us, the large contrast between this trip and our Hurricane Irene-break was apparent. There was no need for the warmth of Jennifer’s shawl under this 70 degree summer-like day. Instead, Megan and Jocelyn recreated a moment straight from their childhood as they lovingly shared a sugary ice-pop bite-by-bite. A debate about how best to handle the watery-syrup mix at the bottom ensued. Although Megan did not speak up to participate, I’m sure one of the sun-splashed smiles she showed was an approval in response to this banter and it’s conclusion.

At the outset of this porch trip, some co-workers of Megan’s arrived to visit. We helped Megan back inside and left her and her colleagues alone to speak. As I write this, I’m reminded of the last time Megan spoke to her boss prior to seeing him on this day.

Megan called Jeff from the hospital a day or two before we really understood what was happening. At this point there were still many reasons to hope and expect that Megan would exit the hospital and resume some semblance of normalcy, but she knew her time at work was numbered.

Megan described the state of the project she was working on. After disclosing the location of her source-code, notes and similar, pertinent details, Megan painfully reflected on her time on this project. She was clearly disappointed that she would not complete it, almost to the point of being apologetic.

Throughout her life, Megan had a natural desire to see everything to it’s end in the best possible way. She had a desire to succeed at the highest level with everything she did, and this battle was no different. Her first medical oncologist, Mr Wizard, described Megan as a ‘firecracker’ and said her ‘normal’ was about 120% of how the rest of the us are. Megan also described in this blog several times her desire to be at the "top-of-her-class" among the studies conducted by her most-recent (and adored) oncologist.

In the 1200+ days from her original diagnosis, I think this was the first time that Megan allowed herself to relinquish some significant bit of control of something to cancer. And even then she was still confident and unrelenting. As she spoke on the phone in the hospital room, she ended her call with Jeff saying that that she would log-in remotely and take care of some final tasks - just as soon as she could.

Megan never gave up.

Thursday, November 3, 2011

Listen as she speaks to you

Everything Megan said had meaning. Sometimes we received fragments of her thoughts that allowed us to determine what she needed, such as a request of a beautiful song. Sometimes Megan spoke in complete, coherent, perfect requests.

On Sunday, after a break from Hurricane Irene, Megan wanted to go outside. It was still quite overcast and a little chilly, but the ninth of 2011’s named storms, and the first to reach hurricane status, was largely behind us, so out we went.

With help, Megan was still able to walk, and so we commenced on another of our favorite last dances, and together we went. Mom Lally and Jocelyn quickly navigated a chair to a nice spot on the porch and I helped Megan sit down. Wrapped in Jennifer’s beautiful hand-knit shawl, Megan sat on our favorite porch, that we had built with our own blood, sweat and tears just two summers before. We all enjoyed a few minutes of the post-storm calm. Although there was no sun to be seen, and there remained a periodic wind that would blow an occasional drop of rain onto Megan’s face, this was still a beautiful day.

Sometimes, Megan said things that we just didn’t understand. When she was speaking with one foot in the next world, to reuse Nancy’s phrase. We quickly decided that we would write these statements down in the hopes that as we shared notes or compared one statement to another from several hours before, some meaning might emerge, and we could be sure we were keeping Megan comfortable and as happy as possible.

Megan often spoke of a little girl. Sometimes this little girl beckoned her to come towards her. Sometimes the girl needed help. At least once, I learned that she had red hair. I wrote many other phrases down, but this was a recurring theme.

Daisy, our hospice nurse, later told us that many people in hospice care see children or relatives that had previously passed away. Megan had also talked about “going home”, and “making it to the next stage”, and Daisy let us know that this was also to be expected. Megan, she explained, was very much aware of what was happening to her and the road ahead.

It was now Monday, and Daisy thought that road could go on for a while. The Lasix and the Lactulose were only just starting and Megan was still physically strong. Our main focus needed to be keeping Megan comfortable, but she agreed that those drugs were worth continuing and there was still hope for the positive effects of those drugs that we so desired. She said she thought we were doing a good job, and that she would see us again on Wednesday. As she departed, Daisy reiterated that keeping Megan comfortable was the primary goal.

When Marlene, Megan’s massage therapist called up later that day and expressed her desire to visit, we agreed that nothing would make Megan more comfortable.

Armed with beautifully scented oils, her strong, yet delicate hands, and her huge heart, Marlene came to visit and was greeted by Megan with the hugest smile I had seen in quite some time. When Marlene asked Megan if she’d like a foot massage the smile grew and was accompanied by a resounding Yes.

For a few minutes, as Marlene gently massaged and lovingly soothed her feet, Megan was whisked off to her favorite spa for a lazy afternoon of pedicures, manicures and gossip with the girls (Mémère, Mom Lally and Jocelyn, no-doubt). When the massage was over, Marlene gave Megan a big hug and the spa trip was over, but I knew we were doing our best to be sure Megan was as comfortable as was possible.

Tuesday, October 18, 2011

Glimmers and Notes of Hope

"Rusty asked me to tell in my words how my night went with Megan; this was the first night that Rusty was able to sleep in his own bed in quite a few days.

As Rusty mentioned, Megan’s Oncologist said that giving her lactulose would possibly help eliminate the “fogginess” that Megan was experiencing. Of course, this meant trips to the bathroom and in my mind, each trip meant that Megan was possibly going to be more alert.

That night I lay down on the couch near Megan and tried to catch some sleep. Sometime during the night, Megan began stirring and this usually meant that she had to go to the bathroom. Hopeful, I asked her if she needed to get out of bed to go to the bathroom. She nodded eagerly in the affirmative.

This was a good sign! I helped her out of bed and guided her off the bed through the kitchen and into the bathroom. (A note of explanation here: the cover to the toilet seat is usually left down to prevent the cats from drinking the water.) When we got the bathroom, Megan plopped herself down onto the cover even before I could get in there to bring it up.

I remarked: “Megan the cover is down; you can’t go to the bathroom with the cover down; let me help you up so that we can pick it up”. Indignant, she answered, “I can do it myself”. She proceeded to place one hand on the nearby sink and the other on the toilet paper holder to lift herself up; before I could help her, her weight on the paper holder made it collapse. She realized that she could not do it and said “I guess you’re right”.

I helped her get up and it was then I realized that she had no intention of going to the bathroom. She was headed for the kitchen to sit at the table and this was a ruse to get her there. I guided her to sit on the chair. I was heartened because this was a positive sign to me that she was becoming more alert. She began mumbling something about “bacon” and after a few frustrated attempts, she said something like “I need to cook the bacon”.

I asked her why she needed to cook bacon at 1:00 in the morning and she said that she needed to make Rusty bacon for breakfast. She proceeded to try to get up out of the chair and said “I need to get the pan out to make the bacon”. I suggested that Rusty was asleep and that she should wait until the morning to make the bacon so that it would be fresh for him when he woke up. That did not placate her.

She commented that her hair needed to be pulled back so that it would not be in the way while she cooked. I said to her sternly, “I’ll get you a hair tie, but don’t you dare get out of that chair; you’ll hurt yourself”. She remained in the chair for the few seconds that it took me to get a hair tie.

We put her hair back and she said “I need to get the bacon out of the refrigerator”. I again told her that it would be a better idea to wait to cook it in the morning. I lost her then. I could tell by her expression that she agreed with me and we both proceeded out of the kitchen with me guiding her into bed. She went back to sleep after that."

Another sign that the hepatic encephalopathy was worsening was this change in sleep patterns. Night could become day and vice-versa. Two nights in a row now, Megan was more cognizant in the evening or wee-hours of the morning than at other times throughout the day. Although clearly exhibiting signs of confusion, I was still encouraged by Mom Lally's recounting of the prior nights events when I heard Sunday morning.

As long as she was still active, able to get out of bed and cognizant in some capacity, I was optimistic that the Lactulose would kick in and take care of the rest. I was also encouraged because I felt Megan's desire to use a bathroom trip as an excuse to be helped up and brought into the kitchen, get to the freezer and ultimately make bacon showed she was still mentally sharp and calculating on some level, even if we didn't understand exactly what she was thinking.

Between incidents such as this, Megan slept a lot - another terrible sign of a failing liver. When awake, her demeanor varied from alert and seemingly paying attention, albeit with varying degrees of response, to a more-or-less catatonic state.

Megan was never as alert and functional under hospice care as she was in the hospital. I don't think we had a full, two-way conversation from the moment she was home, but for much of her time at home she was quite responsive. Her replies varied from head nods, to mouthed or whispered words, to fully verbal replies, but she would slip from demeanor to demeanor effortlessly, and no sooner than you had a talkative Megan, she might be gone.

When in the midst of consuming another does of Lactulose, Lasix, pain-killers and antibiotics, I offered words of encouragement. "Great job, Megan. Open-up, baby, just one more pill and then I'll leave you alone for a few hours."

"I've heard that before," says Megan, dryly, slyly and with complete deadpan expression and timing.

Before I could complete the naturally-elicited laugh that followed Megan's still-sharp whit, and say "She's still got it," she was gone again and unresponsive.

When like this, her eyes might disturbingly flutter back into her head and then effortlessly return, another sign of liver failure. When she would again become alert, she might float between a cognizant, aware Megan, and one, that as the hospice chaplain said, "had one foot planted in this world, and the other in the next."

Megan was at her most expressive when speaking from this next world.

Early on, I was rewarded with another glimmer of hope that made us realize everything Megan said was important, even if we didn't understand exactly what was said or meant. After a particularly quiet afternoon as I was sitting at Megan's side, she stirred, turned her head to me, focused her eyes and whispered slowly with a long, drawn-out rasp.


I wasn't sure what I heard. I asked Megan to repeat herself. I think she did, and this time I heard the syllables a little bit differently, or maybe I just replayed her whisper in my mind and heard things with a little different clarity, but regardless, I had an idea of what she was asking for.

She wanted to hear a song.

Megan was requesting a Phish song, but not just any song, a particular, specific version of Slave to the Traffic Light that featured banjo-virtuoso Bela Fleck. I had posted this particular version on my website just weeks before and Megan commented shortly after how much she liked it.

Now she wanted to hear it again, and of course I honored her request. After the delicate guitar intro began, I was rewarded with an incredibly wide smile, head-bobs and verbal acknowledgement that she recognized the song and yes! This was exactly what she wanted to hear.

By the time the 11 minute opus ended, Megan was quiet again, but I need only look to the comments she put on my site at the beginning of August to know exactly what she was thinking as she laid there, smiling, peacefully taking in the music.

I *really* like the banjo picking at the end. Perfectly timed, and it made that part of the song sound a thousand times more beautiful than it already is.

In the comfort of our home, surrounded by posters and other memorabilia from the literally hundreds of concerts we had attended together, we were still finding ways to connect and share and love, even in these, thus-far, darkest-of-our-days.

There would be music playing in our home for much of the remainder of Megan's time on Earth, from this point onward.

Wednesday, October 5, 2011

May I Have This Dance...

Saturday, August 27 was Megan's first full day home. A smile-inducing breakfast of assorted fruits and an electrolyte-heavy juice drink started the day off well. These would be the staples of Megan's diet for the next several days. Although frequently tired and not very talkative, Megan was responsive, eating and in good spirits.

The weekend hospice nurse came to see Megan to admit her and establish her medical file with the hospice care team. She explained that we could expect to see her regular nurse 1-3 times per week, depending on how symptoms progress. Additionally, a nurse would be available 24 hours a day to answer our questions by phone should anything arise. If necessary, as determined on the phone, a visiting nurse would be just a moment's notice away to come to the home.

She went on to clarify that ultimately, we, Megan's caregivers, would be the ones to handle the majority of Megan's needs, and the hospice team was there to assist in making that possible.

She also described the other members of the care team that were available to help us support and keep Megan comfortable. In addition to the regularly visiting nurse, we could expect assistance from each of the following:

- Physical Therapist: available to assess Megan's ability to move around the house, and suggest potential movements or exercises Megan could do to make such movement easier.

- Social worker: available for support and counseling needs for both Megan and her family members.

- Chaplain: available for prayer, and religious or spiritual counsel for both Megan and her family. Nancy would ultimately preside over Megan's interment ceremony and was a wonderful source of comfort throughout these final days.

- Home Health Aid: available to assist in giving Megan a sponge bath or shampoo, help with light cooking or cleaning and perform other, similar tasks around the house. We received a visit from an aid later that day, and Megan received a sponge bath. This was especially welcome because Hurricane Irene would be here tomorrow and could disrupt visits early in the week.

The inter-disciplinary hospice team sounded very thorough and the support, help and knowledge was welcome and needed.

After completing paper work, our attention turned to Megan. The nurse asked how Megan's diet had been today. We described a quantity of strawberries, watermelon and honeydew melon that Megan had enjoyed earlier that day. The nurse asked about fluids. On the glass in front of me, I gestured to a point on the full-side of the glass.

"That's great. That's more than most of my patients eat and drink in a week."

I was elated. While I certainly knew Megan's diet was greatly diminished, I had no concept of what a reasonable amount of food and drink would consist of. The nurse just told us Megan was eating and drinking well, and with the help of the soon-to-start-working Lactulose, I was sure there would be more good days ahead of us. I was sure.

While the Lactulose had yet to start working, the Lasix, intended to exercise Megan's kidneys and potentially draw some of the excess fluid in her abdomen out of her, was working overtime.

With assistance, Megan was able to get out of the hospice bed and walk to the bathroom for the first few days at home. I would stand in front of and facing her, and Megan would wrap her hands around my neck while I steadied her with both of my hands on her hips or waste. Together we would shuffle around the house like a couple of kids at a Junior High dance, just much slower.

These "last dances" we engaged in are among my most cherished memories of these days. Facing each other, I could look into her eyes and we'd smile at each other. When a break was needed, I'd take her full weight in a hugging embrace and let her catch her feet or breath. As we moved in tandem, I'd offer words of encouragement, tell her how much I loved her, and promise I had her, and that we were almost there.

On one such trip, Megan wanted to stop and sit on the couch. I helped her down and then sat down next to her and put my arm around her. Exhausted, she collapsed into my embrace and leaned her head on my shoulder. I didn't know it at the time, but this would be the last time we would hold each other in this familiar and regularly occurring expression of love that often accompanied watching TV or a movie.

While on the couch, Father Tom, a family friend and priest that ultimately presided over Megan's funeral, came to visit. We all prayed together and after performing the sacrament of the Anointing of the Sick, Fr Tom asked for a few minutes alone with Megan that he later shared with us.

Among other things, he told Megan that she was on her way to a beautiful place where she would be safe and loved and out of pain - Heaven. God would care for her, and have a place for her ready and waiting, when the time was right. She nodded and confidently whispered "Yes, I know."

There were many other visitors that day that Megan enjoyed, although each visit made her more tired than the one before. For the latter part of the day, Megan was very quiet and slept for much of it.

When nightfall came, I kissed Megan and went to spend the night in our bed for the first time in over a week. Mom Lally would sleep on the couch next to her tonight, as I had done the night before, and so I wished Megan all my love and told her I would see her in the morning.

Thursday, September 29, 2011

Megan's return home

It was now Friday, August 26. Megan and family had decided the prior day that it was time to go home. Megan was still largely sensible and coherent, but was already exhibiting signs of delirium - a terrible sign that her liver was continuing to fail. Just a day before she had written several sentences for inclusion in a post on her blog, but the writing already showed that her mind was slipping.

Megan wanted to blog, so I happily navigated my iPad to her site and handed it over to her. When she handed it back just a minute or two later, it wasn't the length of the blog that concerned me. Although it was certainly coherent, it was like a completely different person had written it from the talent that wrote the eloquent and witty and heart-melting and beautiful posts like To Sir, With Love or Dear Miss Manners. I clearly remember the sinking feeling in my stomach and soul as I read her words. My beautiful Bride was worsening and deteriorating before my eyes and I was loosing her.

When we spoke to one of the physician's assistants that Friday morning, I asked about Megan's mental state. I had read that there may be something she could take to slow that progression. Physiologically, the malfunctioning liver was responsible for dumping ammonia into Megan's blood stream that otherwise should have been cleared into waste products. The build-up of ammonia leaks into the brain and is responsible for this degradation in cognitive state, also referred to as hepatic encephalopathy.

The PA explained they had been watching for this condition with a physical test. The PAs or Drs had several times asked Megan to hold up and extend her arms, hands outstretched, finger-tips to the sky in a sort of "I'm stopping traffic" pose. I don't think they ever saw the physical indication, but I'm not entirely sure what that indicator is, either. I think they were looking for some sort of in-ability to steadily create and maintain that pose. After one such test, the GI doctor remarked that Megan had passed.

The physician's assistant decided to prescribe Lactulose. Lactulose is prescribed in cases of constipation, to prompt bowel movement, and is also used in cases of liver failure to draw ammonia from the blood into the colon where it can then be removed from the body. Unfortunately, it would take 24-48 hours for the drug to move through Megan's system, but I was relieved to know there was a treatment.

Later that morning, I asked Megan if we could talk seriously for a moment.

Our conversation was difficult. We spoke of end-of-life issues that no thirty-something couple should have to speak about. After an exhausting several minutes we decided that we would take a break and continue the discussion tomorrow. Megan was departing shortly, anyway - of course there would be time to continue these discussions at home. We cleaned up the tears that had flowed so easily and continued preparations for her departure.

In hindsight, the drive was magnificent. At the outset, Megan was assisting in the directing of Mom Lally's driving to get us onto the MASS Pike and her mind was highly alert and functional.

"Take a right at the light"

The directions Megan assisted with over the initial several miles were completely normal and perfect. By the time we drove the approximately 43 miles to Worcester, Megan was exhausted and asleep. The doctors had predicted that the drive would wipe her out, so this was to be expected.

With help, Megan was able to walk up the stairs into our home, change and get into the previously configured hospice bed. We took this moment of alertness to give her her dose of Lactulose and her other prescriptions and then she slept almost immediately. After about 2 hours Megan awoke and was surprised to find out that it was not Saturday. She thought she had slept for considerably longer through the night.

After a light dinner, Megan slept again. I needed to wake her between midnight and 1:00 am to take an antibiotic in case there was still infection at hand. When Megan woke naturally I used this as an opportunity to give her the same antibiotic she had been receiving for several days, but this time she resisted.

"NO! It's not right! Too many pills! I won't take anymore!"

Megan was confused, agitated and NOT happy to be given more pills. She felt she was being tricked, ganged-up upon and these were NOT her pills. After some coaxing, pleading, and the encouragement and addition of an anti-anxiety drug, Megan took the antibiotic and went to sleep peacefully, but this new symptom was clear. The delirium was escalating quickly, and the Lactulose we prayed would give us more great memories with a clear-headed-Megan needed more time to begin working.