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.

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.

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.

"Baaaayyylaaaaaaa......"

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.

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.

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.

First, a symptom review

Megan's symptoms upon entry into the hospital are well-documented in my post from August 23, but from the days following that, to my next post, the symptoms escalated considerably, and those details are lacking. I'll begin by summarizing some of those new symptoms and clarifying some of the statements in prior posts.

First, let me say that up until Wednesday, August 24, I had every reason to expect, hope, pray and believe that Megan was going to be OK (well, as OK as someone with metastatic breast cancer could be - of course I didn't expect her to emerge cured, but I did have an expectation that her time was not as numbered as it was, and she would return to some version or subset of normalcy).

I realize now this was naive. There were symptoms that could explain what was happening. In hindsight, I do wonder if her care team could have more properly educated us of the significance of some of these symptoms, or if they did, and we, those who love Megan and were there listening, simply focused too much on the glimmers of hope. Regardless, it's not my intention to cast aspersions on her care team with these posts (I have NO doubt Megan was under the best care) but rather, this is my attempt to reconcile those symptoms and signs with the timeline of Megan's final days.

In hindsight, the swollen gallbladder was probably not an infection, but I don't think this can be completely determined. Likely, the tumors in the liver were rubbing against the gallbladder and causing inflammation due to the close proximity of the two organs. This explains some of the new pains Megan was feeling, including those in her lower back on the day she was admitted to the hospital, and the feelings Megan wrote of in a prior post that she felt in her shoulder that were later described as transference. Between the swollen gallbladder and the increase in white blood cell count, infection was seemingly a worthwhile avenue to explore, but ultimately not the culprit. A decrease in gallbladder size over Megan's stay gave hope to the infection-theory, but was likely just a red-herring. The WBC count steadily rose and pointed to something other than infection.

It was also during Megan's time in the hospital that ascites set in. Ascites is the condition that occurs when the liver is no longer able to synthesize a certain protein that is used to regulate fluid levels in the body by keeping this fluid in the blood vessels. When this protein is no longer available, fluid builds up in the abdomen that leads to increased abdominal size. The nausea and vomiting Megan felt on the day she was admitted, and periodically during her hospital stay, could also potentially be attributable to ascites.

Her care team explained this increased abdominal girth by pointing to her dehydrated state when she was admitted, and indicated that they had done too good a job of re-hydrating her via IV fluid. They thought the excess fluid they pumped her up with was contributing to this condition, but in hindsight, this was a classic symptom of liver failure. A drug, lasix, was prescribed upon exit from the hospital to exercise Megan's kidneys via bathroom trips to potentially remove some of this retained fluid.

Finally, as the bilirubin levels in Megan's blood increased, a condition called jaundice set in. Bilirubin is created by the normal breakdown of old red blood cells that naturally occurs in the body. A functioning liver removes this pigment. When the liver malfunctions an excess amount of bilirubin collects in the blood and eventually seeps into and gives the skin and whites of the eyes a yellow-ish tinge.

A look at Megan's Total Bilirubin measurements gives some startling insight into just how quickly her situation escalated. For reference, a "normal" amount of this total bili count is 0.2 - 1.2 mg/dL (whatever that means). Below are Megan's measurements during her stay in the hospital and for several of the blood draws done prior to her hospitalization. I don't have the exact reports for all of these dates, so where I've relied on my notes or memory I've indicated with "~".

06/30/2011 - 0.9
08/03/2011 - 0.9
08/15/2011 - 1.3
08/19/2011 - ~2.0
08/20/2011 - ~2.5
08/22/2011 - 4.6
08/23/2011 - 4.8
08/24/2011 - ~9.0
08/25/2011 - ~10.6
08/26/2011 - 14.3

She went from consistently normal (albeit the high-end of normal, but normal nonetheless) to terminally critical in less than a month. The morning that her hospital stay ended she was ~14 times higher than the high-end of normal.

As I wrote earlier, many tests were run to attempt to explain this excess bili. An MRI was run and showed that the bile duct was clear and didn't also indicate any significant growth from prior tests. This, of course, gave us further hope that infection was to blame, but in reality, significant tumor growth was just not necessary.

The liver can function with only as little as 10% of healthy tissue. Megan wrote of the dimensions of her tumors in prior posts and essentially I think she found herself on the cusp of that line. Simply put, it didn't take a lot of tumor growth to bring us to this point. While we clung to every hope that this was something other than cancer for all the aforementioned glimmers, the reality was that Megan's liver was failing due to metastatic breast cancer and "significant" growth just wasn't necessary to push her over that edge. A functioning bile duct was irrelevant. There was just not enough healthy liver to perform it's role normally as it had done days before.

Every day I woke up in the hospital on an uncomfortable, pull-out easy chair, and I would immediately look to Megan to gauge her skin color. Periodically, I'd ask to see her eyes and ask her to look in a certain direction so I could mentally compare this eye to the last time I looked. At times I thought the jaundice was improving.

Unfortunately, this symptom was made all-too real during two of the happier moments of her stay. The hospital has a beautiful roof-top garden one floor below where Megan was staying. On Wednesday and Thursday, August 24 and 25, Megan, Mom Lally, Jocelyn and I visited this lovely little safe-haven.

On this garden roofdeck, in the natural light of the sun under a clear, blue, gorgeous sky, it was impossible to deny the affect of the jaundice.

Under the unfamiliar florescent lights of the hospital room, with shadows cast by strange medical equipment, and the close-by, surrounding buildings, it was easy to look at Megan and think that maybe her eyes looked a little clearer today. Maybe her skin is looking a little lighter. I think I can see that the Bili is slowing!

Here in the 6th floor garden, under familiar, natural lighting, the affect of the bili and the condition of jaundice was undeniable, and yet, it didn't really matter. We were surrounded by exotic plants and flowers, and BoBo the topiary-bush-bear,and a Babar-like elephant and a seemingly magical frog. The wind was blowing through Megan's hair, and although it also took with it tears from each of us, we were together, holdings hands, in a beautiful place with a smiling-Megan. And that was very special.

There was one other significant symptom making it's presence known that I'll begin with in the next post.

One final note: I'm not really a doctor, I just play one on the Internet. I took a page from Megan's blogging playbook and have attempted to summarize some of my Google-findings that I've queried using my knowledge and experiences of Megans situation. If I've managed to mangle something, feel free to reply and set the record straight. Thanks for reading.

More Posts and Megan's Interment

I've decided that I need to continue to post until all of the details of the days leading to Megan's passing are well-documented. In April of 2008, when Megan was first diagnosed, there was much Googling performed to get some sense of what to expect about the path ahead of her. The information that was found was very much valued, but varied greatly in technical breadth and depth, and the first-person accounts were few.

As her treatments began, Megan was blogging to communicate her health updates with loved ones, but the blog was initially marked as private. Although a "login" was not required, Google and similar sites were not regularly indexing the site, and thus the content was not searchable. After treatment of her primary diagnosis, Megan decided to make the blog public so that others might read, and learn from her first-hand experiences when performing exploratory Internet searches just as she had once done.

It is this desire to add to the written-record of experiences that others can draw from that compels me to continue writing. I apologize in advance, as this could be too much information for some of you, but I need to do this to hopefully allow someone else to learn from these experiences and also to complete the already well-documented journey that Megan began three and a half years ago.

I have written much of this, and in the coming days I will begin to post. In the meantime, I leave you with a few pictures. I hope posting these is not considered in poor taste, but I wanted to share how beautiful Megan's plot looked on the day of her Interment (Tuesday, September 13) and the day after. This is at Hope Cemetery in Worcester, and if you would like directions to her plot, just let me know.

 A permanent marker will adorn this plot in the near future. For the short-term, a temporary marker provided by the funeral home can be seen.

Thank you for all your continued thoughts and prayers.

Megan A. Lally (10/9/1980 - 09/01/2011)

Rest in Peace, My Love








http://www.legacy.com/obituaries/telegram/obituary.aspx?n=megan-antoinette-lally&pid=153481463

Visiting hours for Megan will be Thursday, September 8 at Mercadante Funeral Home in Worcester from 5-8 p.m.  A traditional Catholic Mass will be held for Megan on Friday, September 9 at St. Joseph's Catholic Community in Fairhaven, MA at 10:00 a.m.  In lieu of flowers, donations in Megan's memory may be made to breastcancer.org.

Megan is home

Megan is home. She came home from the hospital yesterday, as planned. The drive was uneventful, but as predicted by her doctors, it made her quite tired. She's had some visitors since then that brought her spirits up. I'm sure many more of you would like to visit. With Hurricane Irene on the way, Monday is probably the next day she'll be up for some visitors. Feel free to send me an email (makisupapiggy@hotmail.com) or call one of our cell phones and we'll try to work out a good time. If I don't answer, just leave a message and I'll get back to you when I can.

Another update from the hospital

I'm sorry if this is the first time you're hearing this latest update. There is nobody that wishes we were not here more than me, but unfortunately these are the facts of the situation.

Today we began the process to bring Megan home. The bilirubin levels continue to rise, and there is no treatment that her body can handle in this condition. While there is always reason to hope that these levels come down and a treatment can be resumed, her oncologist thinks this is unlikely. Megan's liver is largely taken over by tumor mass and it will likely continue to degrade and fail. Although there are no signs of infection in recent blood cultures, urinalysis and chest X-Ray, she will continue oral antibiotics at home for precautionary reasons. If there was an infection that precipitated this, it appears to have cleared up, but it's also possible that this has always been the cancer.

Megan is relieved to be going home. Home hospice has been contacted and will be available to help keep her comfortable and treat her symptoms. She will be able to sleep more (no multiple-per-night wake-ups to check vital signs) and "visiting hours" will be much more flexible. And of course, she will be in the comfort and familiarity of her own home surrounded by those who love her, including her two favorite cats.

Right now she is scheduled to be discharged on Friday around 11. We expect to speak to the hospice nurse that afternoon and arrange a time to meet her. We'll discuss a schedule for her to visit, learn more about the inter-disciplinary team that will help us care for her (in addition to the nurse, there are a social worker, a chaplain and other people available) and, in general, better understand the care that hospice provides to make the remaining time that Megan has as comfortable and liveable as possible.


Megan also wrote a few words before asking me to summarize the above details:

Well, we finally got some factual information from the one person we trust - my oncologist. She leveled with us and told us that it's looking pretty bleak and that we're kind of out of treatment options. So, I'm going into home hospice where I can feel more comfortable and spend more time with the kitties and not drive Rusty crazy going back and forth. I envision visiting hours to be more flexible, but I know I'm starting to lose it a bit as well. I'll try to post again when I know more, but we all know how that's been going.

I will continue to post updates as I can. Thank you for your continued prayers, thoughts and well-wishes.

Megan Update

On Thursday, August 18, Megan, Mom Lally and I went to Dana Farber for a scheduled appointment. It was Megan's last day of taking a new drug (Seliciclib) on the clinical trial that she is part of, and the intent was to check out her blood chemistry to see the effect of the chemicals, take a skin biopsy to view the effect of the drugs on cell division and perform other, similar trial-centric tests. As Megan has been a part of other trials, we've been through similar routines. This appointment was anything but routine.

The difficulties started earlier in the day after Megan got out of the shower. I observed that she was taking many short, rapid breaths. The appointment was just an hour from now, so we got in the car and made the ~45 mile drive to the Yawkey Center at Dana Farber. During this drive, Megan sat back and closed her eyes, and her breathing slowed to a more normal pace, and so we hoped all was well and she was just anxious for the appointment.

Once in the nurse's care, the "typical" tests were begun. The nurses had difficulty drawing blood, and surmised that Megan was dehydrated. No problem, they'll just run an IV and get her pumped up with fluids. Unfortunately, running an IV became a challenge. Megan's veins are good for playing hide-and-go-seek any day of the week, but even more so when she is a little dehydrated. Perhaps my perception of time is off a bit, but it seemed like 5 nurses took turns for almost 2 hours attempting to find a vein to get fluids running. As they attempted this, periodic blood pressure measurements showed a continual drop.

And the problematic symptoms only increased. During this time, new pains emerged in Megan's lower back and stomach area. She was light-headed, nauseous and eventually got sick. The nurses called an ambulance and let us know that Megan would be admitted to the emergency room because they would have more tools available to aid in getting an IV into her to get her re-hydrated.

Once in the emergency room, an IV was run and they began pumping lots of fluids into Megan. Several tests were run: Chest X-ray, 2 kinds of ultrasounds, and a VQ scan. The only definitive finding was that her gallbladder was enlarged, and the doctor's surmised that some kind of infection was responsible. This explained her other symptoms, as well.

Megan was admitted to the Brigham and Women's Hospital adjacent to Dana Farber in Boston and started on a trial of antibiotics. By Thursday night, her blood pressure was normal and Megan was feeling much better. On Friday, a new blood draw was taken and Megan's BP, pulse and temp were all looking good, and Megan was up and feeling well. Unfortunately, that blood draw showed that her white blood cell count (WBC) and some of the liver function tests (LFTs) were elevated.

It's now Tuesday, and this is largely where we still are today. Megan is still in the hospital. A variety of additional tests have been run, including chest X-Ray, MRI, and many blood draws. The WBCs have been increasing daily. Up until today most LFTs were increasing. Today showed that 4 of the 5 metrics in the LFTs all decreased, however the amount of Bilirubin ("Bili") present in Megan's blood continued to increase. That said, the WBC and Bili increase day-over-day was considerably smaller than the prior day.

The MRI has shown that Megan's liver bile duct, where bilirubin should be removed from the blood and converted to waste, is unobstructed. If this were obstructed, this would be a concrete (and bad) reason for the increased Bili counts in the blood. It's good news that this is not obstructed, but doesn't explain the source of the increased levels. The scan also showed that Megan's gallbladder is back to a normal size. Finally, the Gastro-intestinal Dr said he did not think there was an increase in tumor mass that could explain this, based on the MRI. We're still waiting for results of the chest X-ray to see what else we learn.

The current theory is that Megan does indeed have some kind of infection and that the antibiotics are working as evidenced by the normal sized gallbladder, normal BP, and decrease or slowing in a number of the metrics. The Dr's can justify that the Bili is high even though other metrics have lowered because the Liver likely slowed when infection was at its highest, and a queue of sorts of Bilirubin has built up in the blood and that the liver needs to get caught up. We will continue to watch these metrics over the next couple days. Additionally, a new blood culture has been taken to investigate for additional infectious agents.

That's the latest information. On a less "technical" note, Megan is feeling OK. Pain has decreased. She is often very tired and takes many naps, but when awake is in good spirits. She feels she is in the best care that she could be in, and is in no hurry to leave so long as there are additional questions to answer. When we have some more of the answers, I'll write back. Thanks for all your thoughts, prayers and well-wishes.

New Trial

I thought now would be a good time to give an update on the new trial.  I started on Monday.  I went to Dana Farber and had a skin biopsy on my right thigh.  I actually began taking the meds on Monday evening.  So far I haven't really noticed too many side effects.

I have some mild dry skin.  I have been pretty tired (nearly nodding off at work!).  I have also been in a fair amount of pain over the last few days.  It's all over the place.  Sometimes in my right shoulder, sometimes in my center abdomen, sometimes on my right side.  I'm hoping this is the tumor cells dying a horrible death.

On Monday evening I begin with the heavy hitter - the drug that is supposed to make me really tired and sick.  But, I've heard that it goes away pretty quickly.  We shall see.  I'll keep you posted!

Next

I had my pretesting appointment at Dana Farber on Wednesday, and I am happy to report that I am eligible to start the trial on Monday.  The liver number that counts for this trial is still in the normal range.  My other liver numbers have gotten a little worse (as expected), but the doctor felt comfortable letting me go the next 5 days without treatment so that I could start the next trial.

I am really pinning my hopes on this trial.  We really need to find something that works because I am definitely feeling lots more pain and tiredness.  It's hard to breathe deeply, because it causes a sharp pain in my right side when I try to take more than a shallow breath.  This makes it difficult to do some activities, like walk up stairs.  This is all very frustrating, but based on how I feel, I think I should know if we're starting to see results on the new meds.

Oddly enough, I have another comic to post.  It's weird, this guy never posts about cancer and now he has two in one week.  I thought this one was really funny, whereas the other one was more enlightening, and not really funny at all.

I thought this was cool.  And yes, I do have these badass tattoos from my first rodeo. :-)

Comic

I read an interesting comic the other day.  It's by a guy who does about 2-3 web comics a week, and most of them are really nerdy.  The name of the site is "xkcd" and when asked what that means, one blogger says "It means having to look something up on wikipedia for every second comic".  It's that nerdy.

Anyway, a few months ago, the writer went on a bit of a hiatus because of a family medical problem, but he didn't disclose what kind of problem it was right away.  It turns out that his wife, who is in her 30's, has Stage 3 cancer.  Since her diagnosis, he occasionally writes comics about cancer, about dealing with people who don't understand cancer and treatments, etc.  But he mostly still writes nerdy comics.  The other day, he wrote a comic entitled "Lanes".  If you are friends with me on Facebook, you may have noticed that I shared a link to it.  Here is the comic:

If you have trouble reading it, you can go to the original comic here:  http://xkcd.com/931/  Note that what those lanes represent is essential the stages of breast cancer.  The left-most 25% is Stage 1, the next 25% is Stage 2, and so on.  I thought the comic was a good way to sum up what it's like to deal with treatment from a bird's-eye view.  There is so much that is unknown.  You never really know if you're "cured", but you sure as hell know when you're not cured.

Obviously I'm not cured.  I really hope to stay on the road.  This Wednesday, I meet with my oncologist and go through a bunch of tests (including a CT scan) to see if I qualify for the next trial that I spoke about in my last post.  If I don't make it, I will most likely go to taxol next.  Here's hoping!  I think the only thing that has the potential to disqualify me is my liver numbers, but I've been very good about that.  I have not had an alcoholic beverage since Wednesday, and I won't have another one until after my test.  Honestly, I really don't drink that much anymore anyway.  I haven't had any tylenol, and I'm hoping to stay well-hydrated the day before and the day of the test.

I've been feeling decent over the last week.  The pain on my right side is definitely increasing, but it's manageable.  I am able to finally eat again!  On the advice of my aunt (thanks, Louise!) and my doctor, I've been taking an antacid about 30-60 minutes before eating lunch and dinner.  It has made a world of difference.  I'm finally able to eat again without having awful pain 5 hours later.  And that is a good thing.

Results

I don't even know how to begin.  What the hell.

My latest scan showed progression again.

I'm not sure whether or not I should be angry, depressed, or try to maintain a positive attitude.  You may get a mix of all three in this post.

I kind of saw this coming.  I hadn't been feeling well over the last week.  I had problems with indigestion, I was feeling a little more pain in the liver area, and I just knew something was wrong.  I was hoping it was the Xeloda doing it's work, but I knew better.  When my oncologist told me that there was progression it really just confirmed what I had been suspecting.  I tend not to post about every ache and pain on the blog (which is sometimes why there are big absences).  I don't want to worry everyone, and I don't want it to seem like I whine about every little thing.

My oncologist laid out a few options for us.  There is one study available to me, and 5 types of standard treatment.  I'm not going to go into the standard treatments right now, because we are choosing the study.  The reality is, the more lines of chemotherapy I have, the more ineligible I become for future studies because most of them have restrictions on the number of prior lines of therapy.  I need to go with the trials now if I can tolerate it.  What do I mean by that?  Well, the trial also requires a 3-week flush out period where I have to be off the prior treatment.  So, I basically have to go for the next 2 weeks without any treatment (it's already been a week since I stopped Xeloda).

The trial is supposedly akin to the PARP inhibitor trial that I did at the very beginning.  That's the only treatment that worked at all, so I'm really trying to focus on that positive indication.  It's an oral treatment, where I take one drug (Sapacitabine) for 8 days, and then I take another drug (Seliciclib) for 3 days.  Then I have 11 days off.  It's a Phase 1 study, but they are finished with dose escalation, and they are expanding the participants to BRCA-positive patients only because it has shown promise in these patients.  (Score!)

Sapacitabine is a drug that has been shown in mice to be superior to Gemcitabine in treating liver tumors.  Gemcitabine is one of the standard treatment options available to me.  Sapacitabine attacks the DNA of the cells (which is what the Temozolomide did in the PARP trial).  The side-effects of this drug are supposedly pretty mild.

Seliciclib is a cdk-inhibitor (cdk is a step in the cell life cycle), and it has been shown to induce cell death in a way that makes it so surrounding cells don't absorb any of that cell's "bad habits".  The Seliciclib is supposed to produce more intense side-effects, mostly nausea and anorexia.

Together, the drugs should be killing cancer cells and preventing them from multiplying.  Both drugs are oral drugs, which is great.  It delays the necessity of a port.  I really don't want a port, especially in the summer.  I'll need to do 3 skin biopsies as part of the study (taken from my thigh this time), and a bunch of blood draws (that's par for the course).  I should be scanned every two cycles at the start.

I am probably going to go for pretesting on August 3rd, and I should start treatment on August 8th.  The thing we're mostly concerned about at this point is my liver function.  If the numbers get above a certain threshold, I won't be able to participate in the study.  So far, the number they use is actually in the normal range in my blood work (though other liver-function tests are not).  I'm just going to keep taking my pain killers over the next 2 weeks, and I'm supposed to let my doctor know if things get appreciably worse.  If I can't participate in the study, we want to move to standard treatment ASAP.  In fact, she said that I could start that standard treatment today if I really wanted it.  But I don't.

That's about all I know about the new treatment.  I have an internet acquaintance that also sees my oncologist, and she'll be starting this exact treatment on July 25th.  We're going to keep in touch, and she'll be able to let me know how things are going.  I'm kind of excited that I'll have someone else ahead of me to warn me of the side-effects since there is so little information out there about these two drugs.

Now on to the actual results.  For the first time in awhile, I actually read and digested the radiologist's report (I don't think I ever received the last one, since I got the results over the phone).  It was kind of scary.  The size of the large tumor seems huge.  It was 17.8 x 16 x 6.9 cm, and it has grown to 17.8 x 19.4 x 7.9 cm.  When I saw these numbers I freaked out.  That's like the size of a football.  I asked my case manager at Blue Cross about this, and she explained that these aren't spherical dimensions.  This is how long/wide/high the tumor is at its greatest point.  So, it probably looks more like a badly butchered piece of steak instead of a football.  The tumor is pressing against my lungs to the point where the right lower lobe has likely partially collapsed.  They use the obfuscated term "atelectasis" on the report.  Nice try, radiologist, but I have wikipedia.  Everything else in the scan is clear.

My lab results are also getting worse, as expected.  My liver function number (SGOT) went from 98 to 104.  The trial is only concerned with the SGPT number, which is 47 (normal is between 7 and 52).  I don't know what the actual cut off is, and I don't know the difference between SGOT and SGPT.  I can only care about so many things :-)  My CA 27-29 tumor markers went from 131 to 182.  Yowza.

So this is all kind of freaking me out.  Not gonna lie.  I've been secretly telling myself that if I got more bad news I was going to quit work and go out on disability.  I'm still not sure if I'm ready for that, but I'm also not getting the kind of satisfaction out of work that I once was.  I'm going to deal with that next week, though, and I don't think this is the most appropriate forum to vent about my work frustrations :-)

As I am wont to do, I'm going to end this post with some positive thoughts.  No more hand and foot syndrome!!  My hands and feet had been getting pretty bad.  It was starting to interfere with my knitting, and it was about to interfere with my spa trip tomorrow.  I was reluctant to get a pedicure while my feet were in pain, even though my esthetician at St. Cyr is really accommodating and listens to me when I tell her not to slough the dead skin off my heel, since that skin feels like it's burning.  Right now my feet feel pretty much normal, so I am getting the standard treatment tomorrow, which makes me very happy.

I also should notice my energy levels rebound over the next couple of weeks.  Unfortunately, I've been having trouble eating because the tumor is pressing against my stomach.  I need to eat smaller meals, but I love to eat, and it's hard to adjust to that style of eating.  I've lost about 10 pounds over the last 4-6 weeks.  Normally I would be thrilled about that, but that's not really the goal at the moment.  Rusty is making sure I drink Ensure when I can't get a good meal in (another Grandma moment).  It's actually not bad, and it comes in a dark chocolate flavor.  Yum.

Over the next two weeks, I'm going to try to be happy that my body is not enduring treatments.  I'm going to try to look up cancer-fighting foods and I'll eat some (in small portions).  I'm going to try to get some rest and knit and sew lots.  And I'll try to update the blog every now and then.

No News

Just a quick update to let you all know that I haven't heard back from my doctor about the results of the scan, so at this point I think I'm waiting until Thursday.

I haven't been feeling too well lately.  I broke down yesterday and resumed taking pain meds, and it has improved quite a bit.  Maybe I shouldn't be so stubborn.

Luckily, the hands and feet have drastically improved and I am knitting quite a bit.  Today is my day off, so I'm taking it easy and hanging out with the kitties.

More Xeloda

I went back to my oncologist's office last week to check in and get the pills for another round of Xeloda.  I was very excited to tell my doctor that I had stopped taking pain meds.  Therefore, I was really expecting a good set of numbers from my blood work.  A day earlier, I started feeling that referred pain in my left shoulder, and it had worsened on the day that I visited my oncologist.  That was a little concerning, but it certainly wasn't anywhere near as bad as the pain I'd felt a couple of weeks earlier.

I met with her nurse practitioner first, and we talked about some of the symptoms I had experienced in the last round.  None of it was so bad that they would reduce my dose, so that was encouraging.  Then we reviewed my blood work.

Unfortunately, it was not as good as I had hoped.  My liver function went from a number in the 50's to a 98, where 9-30 is normal.  Previously I had asked my doctor what a "really bad" number is for liver function, and she said she has some patients in the 300's.  My tumor markers, CA 27-29 had also jumped.  Unfortunately, I don't remember what it was last time, but now it's 131.  Normal is 0-38.

As you can probably guess, I was not pleased.  I was pretty discouraged.  When I got to talk to my oncologist about it, she was sympathetic that it wasn't at all what I had expected, and she told me that she was really encouraged by the way I actually felt.  She let me know that Xeloda itself can affect liver function, and that she's also seen tumor markers spike when a drug is working.  I just wish we didn't have to find reasons for why the numbers are bad.  I'd rather just see good numbers, dammit.

I'm a week into the second round, and the referred pain is definitely gone again.  I had it for about 3-4 days, so it does seem like the drug might be working.  It's possible that the week off gave the tumor an opportunity to grow, which is kind of what I think is happening. If that's the case, it seems like I'm taking 2 steps forward and 1 step back.  So, net forward :-)

On a crappy note, my feet are really bothering me.  It was my day off today so I got a massage and she concentrated on my feet for a bit, which really helped.  I have some new stuff to put on them, so I hope it improves.  We shall see.

I'm getting a scan next Thursday.  Tell me something good.

Cold Turkey

Has it been almost two weeks?

Well, let me catch you up.  Xeloda has been not too bad.  During the two weeks I was taking it, the worst side effect I experienced was fatigue.  If I have a big day, I am completely spent at the end of it and I have to go to bed early.  It really hit me hard at the beginning, and it kind of tapered off as the time went on.  Sometimes just the thought of doing something is exhausting and I psych myself out of it.  I haven't really had nausea, but I vomited a couple of times, seemingly out of nowhere.  I have also noticed an extreme lack of appetite.  I seem to be eating about half what I normally would and then I'm way full.  It's kind of weird, because I have never in my life had this problem.  I've lost a little bit of weight as a result, but I'm not too worried because I can't really exercise.  Until I'm in a size 4, I won't worry too much about it.

On the last couple of days of taking Xeloda, I started to notice hand and foot problems.  It felt like this... On the first nice day of the year you wear sandals for the first time in months.  You go on a walking tour of a large city. The next day, your feet are absolutely killing you, and you don't want to wear those shoes for another week until the bottom of your feet feel better.  That's how it felt.

Then, on the day after I took the last dose, my feet actually felt better as the day went on, whereas the previous night had made them feel worse.  Clearly, getting the drug out of my system was what helped, since sleeping had not made them feel any better.

I've been off the drug for about four days now and I'm still tired, but my appetite has come back quite a bit and the hand and feet problems are nonexistent.  But that's not the only drug I'm referring to when I say "cold turkey".

For the last few days I had been thinking about not taking my pain meds.  I had stopped taking them briefly almost right after I started taking Xeloda (after that steroid incident where I felt great for one day), and I was in a lot of pain, so I started back on them right away.  Even with a constant level of Oxycontin in my system (once every 12 hours), I had a few really weird painful episodes a week or so ago.  One day, I woke up around 4:00 in the morning and I had wincing pain in multiple areas of my abdomen.  It was so bad I was whimpering and crying and I was just in absolutely so much pain I couldn't think straight.  I had to take Ibuprofen on top of the Oxycontin just so I could go back to bed.

However, I haven't been feeling any breakthrough pain for awhile, and I thought maybe this weekend was a good time to see if I could stop taking them.  I was reluctant, because I really didn't want to start feeling that bad level of pain again, but on Saturday morning I was kind of busy and I didn't take them right when I woke up.  I did a few things, didn't feel any pain, and I still didn't take them.  Before I knew it, I was driving to see my mom and I hadn't taken anything for several hours past my scheduled dose.  Let's get to the point.  The last time I took anything for liver pain was Friday night, and I have been feeling good.  I am hopeful that Xeloda is working and I'm looking forward to telling my doctor about it when I see her on Thursday.

Based on this information, I don't think I'll get a scan until I complete another round of Xeloda, so the official verdict will have to wait.  I've felt this way before, so I'm not trying to get myself too excited, but it's kind of hard not to be happy about this.

This Blog Post Sponsored By Pharma

I thought today would be a good day to give an update on my Xeloda treatment because today was a pretty good day.  First, let me start by saying that I do NOT have a pulmonary embolism.  Rusty read my last post and informed me that I never actually gave the results of my last scan even though I knew as I was writing it that it came back clean.  Whoops!

Also, remember how in my last post I was feeling great and I was speculating about why that was?  I was thinking it could be either the new pain meds, the steroids, the Xeloda, or the mental relief about starting a new treatment.  The verdict is in:  it was definitely the steroids.  And maybe a bit of the positive mental attitude.  But that could be the steroids, too.

So far, the Xeloda has been pretty uneventful.  I've had a brief encounter with mouth sores, and a very slight tingling in my hands, but the worst side-effect has been fatigue.  I typically take a nap on the days that I'm home, and I typically wish I could take a nap on the days that I'm at work.  However, today I went to work and didn't feel the need to take a nap.  Hooray!

Unfortunately, I haven't noticed a decrease in the level of pain, but I think I've finally gotten used to managing the medication so that I don't feel much of it.  Sometimes I try to power through it or "grin and bear it," but I think that has actually been hurting me more than it seemed.  I've had that awful pain in my left shoulder area that my oncologist said was probably "transference".  [As a side note, I first thought that meant that maybe I was overcompensating or tightening some muscles to reduce the pain in one location, and it was just travelling to the new spot.  Maybe that's really what she meant.  However, my searching on "pain transference" has yielded lots of psychic mumbo-jumbo results that don't really sound like what's going on.  I hope she's not calling me crazy.]  Either way, the pain in my left shoulder is real, and I've found that it seems to get worse and lingers longer if I wait to take something for the pain.

More importantly, I'm just plain happier and more pleasant if I'm not in pain.  This is not only good for me, it's also good for everyone around me :-)  I'm also eating better and sleeping better, and that means I'm less tired.  Win-win!

So far, this new treatment is definitely not kicking my butt like the last one, but I'm really hoping it's kicking the tumor's butt.  Or just kicking the whole damn tumor - no need to restrict it to the butt.  I'm anxious to start seeing and feeling some results with the tumor, but it's easier to be patient when I'm feeling better, even if it is better living through pharmaceuticals.

Feeling More Upbeat and Less Beat Up

Let me start by saying that the last several days have been pretty miserable.  The pain in my liver area has been getting increasingly worse, and I had this issue where I was getting a stabbing pain in my left shoulder when I took a deep breath (not to mention that breathing deeply further intensified the liver pain I was already feeling at a constant level).  I've been having to take ever-increasing doses of pain relievers to bring the pain down to a somewhat tolerable level, but it was still there.  I had to eat half-sized meals because anything more than that would be so painful for an unpredictable amount of time.  Sleeping was unbearable.  I would toss and turn, and whimper every time I hit a position that pushed on my liver.  The only way I could sleep was to sit up practically straight and take Oxycodone before I went to bed, and then half way through the night when I woke up in pain again.  And I was so tired all the time!  This does not make for a happy Megan.

Today, I feel much better.  I don't know exactly what it is that is contributing to it, but I suspect it's a combination of the following:

• New pain medicine that is designed to release slowly and last longer (Oxycontin vs. Oxycodone).  I got a full night's sleep last night with the new pain meds!
• The two high doses of steroids that I had to take for my scan this AM (more on that later).  I'm sure it gave me a lot of energy.
• Maybe the Xeloda.  Who knows, it could already be working.  I've taken 2 doses so far.
• The mental relief and optimism from knowing that I'm on another treatment and that should have mild side effects and that will hopefully work!

I had to get another scan this morning because when I mentioned to my doctor about the shoulder pain, she started asking other questions, and my answers were concerning her.  I've been very fatigued lately, and I've been getting short of breath with mild exertion.  Going up one flight of stairs was pretty challenging.  Three and a half weeks ago I ran 10 miles, where this past weekend I barely got 3.1 in, and I don't know if I'd call it "running."  She was concerned that there could be some kind of clot or pulmonary embolism, so she ordered a CT scan of the lungs.  While it was a bit of a hassle to go back in today, it sounds like something that we should take seriously, so I really didn't mind.  Besides, we went so early that I was there and back to Worcester by 9:30 AM!

So far so good with the Xeloda, but I know I have a long way to go.  I'm taking 1500mg twice per day, and I have to take it for 2 weeks and then I get a week off.  That makes one 3-week cycle.  I'll be meeting with my oncologist right before it's time to take the next cycle, but I'll be communicating with her over e-mail to discuss how I feel and whether or not I'm experiencing any side effects.  It's not uncommon to have to play with the dose a bit, but she said that she started me off on a relatively high dose so that we can hopefully see some progress early on.  I'm assuming that when I see her next we'll discuss when my next scan will be.  Since this is not a trial, we have some flexibility here.  If I'm not feeling better after 3 weeks is over, we'll probably do a scan.

While I haven't been feeling very humorous lately (it's hard when it hurts to laugh), something kind of funny happened in the most recent appointment with my oncologist.  She told me about how the company that makes Xeloda has these bags full of information, a DVD that I will probably never watch (her words, not mine), and some pill organizers.  I could tell that she was bracing for an argument when she mentioned that I should really use the pill organizers.  I say that she was bracing for an argument because I am so "high functioning" and low maintenance.  I'm sure I surprised her a little when I was in total agreement.  Obviously I don't want to miss a dose, but even worse would be wondering whether or not I took a dose.  Sure, I could count them out, but if I'm already wondering whether or not I took a dose, should I be trusting my math skills at that point?  So, I set up my Grandma Pill Box:

Apologies to any Grandmas or pill box users who may be offended.  I feel like it's a descriptive term.  More importantly, I should have no question about whether or not I took a dose, and that's the most important thing.

Driveby Update

Just a quick update to say that I'll be starting Xeloda tonight on a 3-week schedule (2 weeks on, 1 week off).  Anyone who's seen me recently knows that I've been in a lot of pain, so I was eager to get this going.  I'll post more information soon, but my doctor has assured me that the side-effects are expected to be much milder and we're optimistic that this treatment is going to work.

Some Good Points, Some Bad Points

I feel like every time I write a blog entry I have to apologize for not writing sooner.  To tell the truth, this last treatment kicked my ass again, and I didn't really feel much like writing.  I was hoping that the new regimen of anti-nausea meds would help, but it really didn't.  The effects seem to be cumulative.  I spent another 4 days (day 3-6) on the couch, wanting the world to end.  It really was a bad combination of nausea, fatigue, pain, soreness, fogginess, and hopelessness.

But that's all over.  I've been feeling quite good for the last few days.  I went to see Phish this past weekend at Bethel (the site of the original Woodstock festival).  We stayed in a bunk house with some friends at a summer camp about 20 miles away.  The organizers provided buses to the concert location each day.  There was a pool, a mess hall, showers (yay!) and live music during the day and late at night.  It was like hippie summer camp.  We had such a great time!  I got lots of knitting done, kept the drinking to an extreme minimum, and I had a blast.

When I have such a good time, I can almost forget how crappy I feel on the Cisplatin.  Almost.  I recently realized that the next Phish festival falls on a "bad weekend."  I was pretty devastated when I discovered this.  I enjoy seeing Phish so much.  It's such a joyful experience for me.  It makes me happy, it rejuvenates me, and it soothes my soul.  How could I miss another 3 days of awesomeness in exchange for this awful treatment?  Phish makes me happy to be alive.  Cisplatin makes me wish I wasn't.  I made up my mind that I wanted to talk to my oncologist about potentially delaying one of my treatments so that the 4th of July Phish festival could be on a good weekend and I could enjoy myself.

I also had a scan yesterday.  I got all hopped up on steroids, and I didn't experience any kind of allergic reaction (phew).  My doctor called today with the results.  There's no way to sugar-coat it.  Unfortunately, the disease has progressed again.

Ugh.

I was hoping for some relief from this brutal treatment and I actually got it, though not in the way I was expecting.  Since the tumor has now been growing for at least 3 months, I need to switch to a new drug.  I'll be starting on Xeloda (capecitabine) soon.  I was supposed to meet with my doctor next Thursday to begin the next round of Cisplatin.  We're going to keep that appointment and I should start on the Xeloda shortly as long as my blood counts are okay.

My oncologist at Dana Farber offered to let me take this drug with my local oncologist, but I'd rather not bounce around between doctors.  I think she was relieved to hear this, and I was happy to say it.  She agreed that it would make it easier for her to treat me and to offer new trials, and that's exactly what I want.  It's a pain to drive to Boston, but I really want to have all options available to me.  Some people drive much further.  I really have it pretty easy.

I've been trying to research Xeloda.  So far, it looks like the most common side effects are nausea, diarrhea (oh joy), and hand and foot syndrome.  I think the nausea and diarrhea are mostly mild, but the hand and foot syndrome is a little disconcerting.  Apparently the hands and feet get dry and blistery.  Most people have said that if you proactively moisturize with special creams, it's not so bad.  I just hope that it doesn't affect my knitting.  If it does, I'm going to need a new hobby!

While I'm obviously upset that my tumor hasn't gotten under control, I am going to look for the good in this.  I absolutely could not handle the last treatment, and now I don't have to.  This really changes the face of my summer, and I'm hoping it's for the better.  I'm going to stay positive and believe that I'm going to have a few days of side effects, and a lot of days of feeling good.  Some people say this is the easiest chemo they've ever taken.  I would like to start being an overachiever again, so let's hope I have that kind of experience.  As always, I will keep you posted.

Cycle 2

I just started Cycle 2 of my current treatment yesterday.  Today I'm home relaxing.  I almost didn't get treated because my white blood cell counts were borderline (and in an un-treatable range, depending on what information the infusion team was looking at), but my doctor decided to go ahead with the treatment and I'm going to get a Neulasta shot on Friday to boost my bone marrow/blood cell production.  That was a relief because I really wanted to get treated today because of a few events I have coming up soon.  Not getting treated this week would have thrown everything out of whack.  It's hard when I know that for 1 out of every 3 weekends it's going to be kind of impossible to do anything.

I have the half marathon coming up in 3 weeks.  I did a long run last week to make sure I was okay.  I told myself ahead of time that I would be happy with anything between 10 and 12 miles.  While my energy level was noticeably down, it was actually my left knee that gave me the most trouble.  Because I haven't been able to do as much activity as I should be doing, my muscles are a little weak and I'm having trouble with my I-T band.  I was able to do 10 miles, though.  I went to physical therapy for this a couple of years ago, so the plan is just to do the exercises the physical therapist recommended, use the dreaded foam roller on it daily, and walk it out during the big day if I really have to.  I've been training for this for about 4 months.  Quitting now would be so disappointing.

So far I'm doing okay.  I have a little bit of mild nausea, but nothing really troubling.  My doctor coached me on a slightly different schedule for my anti-nausea meds this time around, so it's possible that I might even do better than last time.  Only time will tell!

Not much progress on the waiting room sock... I had an interview yesterday for the young adult program at Dana Farber that took about an hour and a half (it was voluntary, but I like to help as much as I can), so I didn't get a whole lot of knitting done in the infusion room.

More later!

Sum Ting Good

Finally, I'm feeling better.  Yesterday for dinner I was ready for my signature "get this nasty chemo feeling out of my stomach and replace it with some greasy Chinese food" meal.  I don't know what it is, but just when I'm starting to turn the corner I have a serious craving for hot and sour soup.  If it's too early, I won't be ready (we tried it a couple of days ago actually, but it wasn't quite the same).  You can't force it.  But when I'm starting to think about food belonging in my stomach again... oh that's the best part.  I'll have a hot and sour soup, some crab rangoons, maybe some chicken lo mein... yum.

So, yesterday was that day.  I had started feeling well enough to pick up the knitting and to watch a movie that required some concentration for a change.  I have been having trouble sleeping because of abdominal/liver pain, so I decided to go for the big guns yesterday to sleep.  I took an oxycodone (it's a pretty small dose actually) so that I could sleep through the night.  I woke up this morning around 5:30, refreshed and ready to start the day.

I was still a little tired and maybe not 100% out of the fog, but I decided to go to work because I just couldn't tolerate another day on the couch.  The drive in was uneventful, but the morning was a little rough as I dug out from several days of e-mail, attempting to think technically once again.

I begged my cohorts to go out for Thai food for lunch with me.  Even though I was feeling better, I knew I couldn't really tolerate just anything for lunch.  If they had chili in the cafe, I would be okay.  But if they had tuna melt or something equally gross, I would not be able to eat.  Rather than chance it, I really wanted to go for another meal of Asian deliciousness at Thai Chilli.  Oh, it was great.  I had the ginger lemongrass soup that they always serve, a Thai roll, and an order of spicy Pad Thai.  I really think that was the difference for me today, because when I walked out of work I was pretty much back to normal.

I realize this entire post is basically about food, but I can't help it.  I love food, which is why feeling sick sucks so bad!  The funny thing is when they're telling you what to eat during chemo they always tell you to avoid bold flavors or really sweet and salty foods because it might make you feel worse.  Psssh.  Not me.  I guess I am the poster child for what not to eat during chemo, but if it works I'm going to keep doing it!

Now if only I felt like I could tolerate a beer...

Blech

I know it's been a few days since I've posted. I think I was unprepared for just how crappy I would feel at the moment. I was okay for a day or two, then I just crashed with a mix of sensations...

There's the nausea, of course. The feeling like I need to put something in my stomach, but not feeling like eating anything.

Then there's the fog. Oh, the fog. I can't think very clearly. It's described as chemo brain. Whatever it is, it makes me feel dumb.

Then I get so tired because of the anti-nausea meds.

I'm also feeling a fair amount of pain in the liver area, which is disturbing my sleep.

Well, that's how I've been doing. Each day is getting better, thankfully. I think I've settled into a decent rhythm of meds and symptoms, and I expect tomorrow to be even better.

Anyway, I apologize if this post is a bit of a downer, but I wanted to give a quick update. Let's hope the next one is better :-)

Captain's Log, Day 3

The seas were choppy today.  It has not been a great day.

It started with a little bit of nausea this morning, and I was pretty tired.  I took some anti-nausea meds, but I wasn't really able to eat breakfast.  We drove to Dana Farber, having made it on time without me throwing up (victory!) but I was just not doing well.  To make matters worse, it took FOUR ATTEMPTS to get my IV in this morning.  I think that's the worst it's ever been.  They were finally able to put it in my hand, but that made knitting awkward, so I've basically just been sleeping all day.

There are eating restrictions with my study medicine, so I wasn't able to eat until 12:40.  Once I had something in my stomach, I felt a bit better.  Now I'm holding out for a delivery of pizza from Upper Crust for dinner.  It's right down the street.

Sorry so lame, I wanted to write something, but there isn't much to talk about today :-/

Captain's Log, Day 2

Today was such a boring day.  I'm almost done for the day, so this will be quick.  I had to come in for 10 to get my blood drawn, then I took my dose of the study drug and I've had to be available to have my vitals taken, once was an hour after the dose, and the other was 4 hours after the dose.  So, I've just been sitting here in this lovely corner infusion room working on the computer and knitting a bit.  I've turned the heel on one of the socks:

I still have to do the other one, but I haven't really done much knitting today.  I should have plenty of time tomorrow, since it's another all-day appointment.

While I don't want to get too excited, I thought it would be worth mentioning that I am feeling less pain in the liver area.  The nausea is mild but manageable without meds.  The proof will be with my next scan, about 6 weeks from now.

Captain's Log, Day 1 pt. 2: Sock Update

After I finished that blog post I had a stroke of genius...  (well, maybe that's a bit of an exaggeration)

Here's a picture of me in the infusion chair AND a sock check.  You'll note that I've made lots of progress.  I'm hoping to get to the heel soon.