Saturday, December 31, 2016

We are different, but all the same

An article was just released today in the Annals of Oncology that looked back at a (relatively) large group of individuals with Mucosal Melanoma (MM). The were attempting to answer the question of how different MM is based on the location of the body it beginnings in. When grouped together, you have sinonasal, reproductive/urinary tract, and gastrointestinal "primaries" (or first tumors). The findings were that they are mostly the same and can, therefore, be reasonably studied as a group. This is good news for research (power in numbers) and not surprising to me. I have been a part of an online group of warriors (and their caregivers) facing MM for the majority of this year. There are many primary sites represented but the experiences, successes and challenges, and questions are largely the same. We are all facing the same, formidable foe.

For me, the news in this article lies in something else that was reported but not much-discussed in the abstract. The survival rates from the study. When I was diagnosed at the beginning of this year, I was given a survival rate of 5% in 5 years, 20% in 2 years. This was less than one year ago. This study, published today, reported survival rates of 20% in 5 years and 60% in 2 years. This is a big difference. You can read the article's abstract here

We have lost many to the fight in just the last few months in our little online warrior pack. I has been very difficult for all of us to witness and to participate in. However, once the fog clears, the losses only make the survivors more powerful. We warrior on. Though its easy to believe the 'beast' that took our friends away has turned its eyes to us as if to say "you're next," we are learning to fight back and we are starting to win. Yes, the tides are turning on MM. The reason this is happening is because of research, awareness, and passion. Passion is often bred by personal loss, and that we have in abundance. The others need funding. We are nearly half-way to our goal for the MM awareness video. Thanks to all of you, we have raised $6,620 toward our $15,000 goal!! I am blown away by your generosity. Today is your last opportunity to give before the end of the year. Please consider giving to our campaign- every little bit helps. You can give here.

I will end with a quote from one of our dear warriors whose life was cut short this Christmas Eve. 

"Where there is life, there is hope" 

Wednesday, December 14, 2016

Windows and Doors


A major lesson I have been digesting over the past few weeks that nothing is black and white, not even life and death. After being diagnosed in January and pouring over all the research on mucosal melanoma and its treatment that I could get my hands on, I developed what I considered to be a pretty clear picture of which events meant that I would be kept safe within the fragile confines of ‘being alive’ and which events signaled my imminent expulsion into the unknown world outside of that. Since that time, I have gotten something qualifying for my ‘expulsion is imminent’ news more than once. Shock and depression would follow and I would begin to turn away from hope. However, each time, instead of opening that door to find the dark, unseeable expanse that I imagined, I have found myself somehow wandering into another room that I didn’t know existed, eyes wide to absorb the foreign walls and heart full of cautious gratitude. What do I know? Apparently not all that I thought I did.

Over the past couple of weeks, several new doors and windows have been revealed to me, including an old door that I thought had been padlocked and dead bolted behind me, the entry into which would not grant access to my prior comforts but instead lead to somewhere frightening.

A new CT scan and MRI showed that my tumor has grown again. Imminent demise initially suspected, I went through the perfunctory cycle of shock and depression. However, it was followed, much more quickly this time by audacious hope, because I’m learning that there’s usually a reason for it! Here are some of them:

1- Miraculously, my liver enzymes have returned to normal. I was able to get nivolumab ‘on time’ last week and it didn’t stir the ‘liver damage’ needle one bit. This was very unexpected and very welcome. It means nivolumab can likely stay on the table indefinitely and that I only need to get the labs drawn every other week, prior to treatment.

2 - The growth of the tumor was nothing compared with prior rates of growth. According to MDACC radiologists, it grew approximately .7cm in 7 weeks time. He used the word “slightly” in the report, which I appreciate but don’t fully agree with. However, in the past it has been known to grow 3cm in 4 weeks. So perhaps the nivolomuab is working after all.

3 -  After much deliberating, the gynecological surgeon and melanoma surgeon at MDACC have gotten a vascular surgeon on board to agree to a surgery to remove the tumor, in its entirety, as long as a scope reveals that it is feasible. The purpose is primarily to harvest the tumor for TIL, which will hopefully replicate in the lab and can be on hand as a back up treatment method if needed in the future. This is scheduled for January 11.

4 - There is still no spread! The nivoloumab is thought to be particularly helpful at preventing spread, so if my liver is tolerating it well I may be able to continue to get this treatment for a long time. The other tumors that were shriveled by the combination immunotherapy have not returned. Nothing new is apparent. Let’s keep this up.

5 - DR. MARKOVIC. At the urging of a few friends in my cancer support network I have successfully sought, and obtained, a second opinion from a creative and personable doctor at the Mayo Clinic in Rochester, MN. Friendly and impressive hospital aside, the visit was very positive. He told me (and here’s where the old door may reopen) that he would be comfortable giving me a small dose of ipilimumab with my nivo, essentially a dialed-back combination therapy, since I had such a great response the first time. He said they've had success with managing immune-mediated hepatitis with a different type of steroid that allows more immune activity and that if steroid taper of prednisone WERE required again it could be done much more quickly. He’s literally the author of a paper on this. He also recommended intra-operative radiation if I move forward with the surgery at MDACC and told me he would be happy to work with a local oncologist in Nashville as much as possible (that he feels a big role of his is to help local oncologists figure out what to do). He also has a few things brewing and coming down the pike that he thinks are just as good an option as TIL, should I need it in the future.

I’ve got ‘disease progression’ and yet I’m smiling because of the many windows and doors that have been revealed to me. These junctures have become less frightening and I’m realizing that I don’t have any idea what lies ahead, and that that’s ok.  

Please consider giving to our awareness project. We have raised $800 so far, let's keep it up! 

Tuesday, November 29, 2016

Giving Tuesday

 The holiday season has begun and attention is shifting from the busyness of life to sharing and giving and the holiday spirit. I want to take advantage of this opportunity on #givingtuesday to share with you a project that I'm working on in collaboration with the Melanoma Research Foundation (MRF). 
As I've shared with you in the past, part of the difficulty with my specific subtype of melanoma is that so little is known about it. It's rare and the way that it can show up is unexpected. Many health care providers at the ground floor, first contact level of care don't know about it or it isn't on their radar screen. When I first noticed my vaginal tumor and called my OB's office about it, the nurse told me it sounded like bladder prolapse and to do Keagel exercises. Neither one of us knew any better. 

Awareness is needed. To that end, the Melanoma Research Foundation is excited to orchestrate the creation of a Mucosal Melanoma awareness video, geared toward both medical providers and the general population. This is a really important step and I'm so happy to be a part of getting this off the ground. We need to raise about 15k to complete the project (and 100% of the funds raised for the project will go directly toward it). The MRF has put together a page for myself and others dealing with Mucosal Melanoma to help raise funds specifically for this project. 

If each person who reads my blog can donate just $10, we will be well on our way to meeting the goal. Please consider donating to this video on this giving Tuesday. Below is the site where you can give online. Alternatively, you can mail a check to the MRF directly and just write "mucosal awareness video" on the "for" line.

Love to you all and well wishes for an awesome holiday season. 

A quick medical update: My liver numbers are higher than they were the day after my last treatment but still low enough to get another treatment! No steroids yet. Hopefully they stop climbing and start dropping again. Scheduled to return to MD Anderson 12/5 and 12/6 for another treatment and a consultation with a melanoma surgeon who works with t-cell therapies. More on that later.  

Wednesday, November 16, 2016

Limbo, Lower Now


Lately I’ve been feeling a bit like I’m in limbo. It’s not a bad place to be, considering the alternative, but it has its own frustrations, nonetheless. My liver enzyme numbers continued to climb after my last treatment (on Halloween) and I was unable to get treatment on Monday because they were over her threshold for treatment. However, they are not high enough to warrant steroids. This means we are watching and waiting for them to either fall on their own or climb high enough to use steroids. And here I sit, getting poked every few days and hoping things improve with nothing I can do to help except avoid liver toxins. No more treatment, but no anti-treatment (steroids). Limbo. 

The following is quite lengthy and detailed, describing my last few days, so feel free to skip to the end to see where things stand with me.

While we wait for my liver enzymes to stabilize, my oncologist’s team set up two appointments with other specialties at MDACC. One was with endocrinology due to concerns about possible pituitary inflammation or damage, and the other was with radiation oncology. The consults, labs, imaging and simulation were spaced out over two days making it necessary to travel to Houston late Sunday and return, at best, very late Tuesday night.

Monday was long and uneventful. My labs were at 7:30AM and my MRI was not finished until 9:00PM. The visit was typical of MDACC. Vitals first, then another nurse checks in about my medications (ad nauseam), pain level (again), whether I’ve been outside the US in the last 30 days, reason for my visit, and an assurance that the doctor’s assistant (resident or NP) will be in soon to talk to me. More waiting. Resident or NP comes in and asks many other questions, trying to understand my history and why I am here. We discuss things at length and rehash many details, ask several questions. Then they leave for a length of time and relay all of this to the doctor who will eventually come in and ask us more questions. Then they request MORE labs, even though I’ve already been stuck once that day. Imaging is confirmed for later that evening and then I got “someone will contact you.” This is a very typical visit at MDACC. A call from a nurse the next day reveals that my pituitary gland is fine, no further action needed. While this is a good thing, it also means that my other side effects and symptoms are not easily treated since they are not related to endocrine problems- which is fine.

Tuesday started well- I had learned that my liver enzymes from the labs the day before showed improvement from my labs at home, still too high to treat but possibly indicating there was less inflammation in my liver. I went back early on Tuesday to repeat the labs to see if it was a fluke or if they were continuing to improve. My consult with radiation was not until the afternoon so we caught a movie (Arrival – pretty darn good, better than the short story, in fact).  Once we returned to MDACC, the day started going downhill pretty quickly. We arrived very early to the appointment because we had run out of things to do. We checked in and sat near the desk. The appointment time comes and goes and my name isn’t called. I then get a call on my phone and hear the echo of the front desk person on the other end of the line. Apparently I had not been told to check in at the OTHER window and wait in that secondary area. OK. The appointment dance begins. Vitals. Nurse. Questions. Waiting. Resident. We discussed the procedure involved in simulation and what the schedule might look like and the future of cancer treatment involving combined radiation and immunotherapy. More waiting.

When the doctor finally came in she introduced herself and then told me, frankly, that she didn’t understand why I was there. She continued with a lengthy explanation as to why it didn’t make sense, pointing out that melanoma doesn’t respond to radiation and that she specialized in gynecological cancers and not melanoma. I had to nearly interrupt her to explain that recent studies show promise with the combination of radiation and immunotherapy (which was discussed with the resident just moments before) and that the goal was to shrink the tumor enough to remove it. Why her? Because gynecological oncology specialists are far more familiar with the complicated female pelvis, which is where my cancer began and my current tumor now sits. She explained that she didn’t typically work with melanoma surgeons and that my case would involve a good deal of interdisciplinary work and that she needed to speak with my oncologist first. She looked very uncomfortable. I told her that the planned surgeon was, in fact, a gynecological surgeon and gave her name. Though she allowed that this would be workable since she sees her regularly, she insisted that this surgeon likely wouldn’t be interested in my case and that she needed to speak with my oncologist about this before she would continue the consult. She had already tried to reach her (immediately before she came into the room with me). I insisted that we came all the way from Tennessee and needed to return home shortly. She offered to discuss my case at the upcoming interdisciplinary panel and would attempt to reach the supposed surgeon…  after seeing her other patients for the day. She declined to move forward with a simulation and told me that I could go ahead and go to the airport and go home. I was unable to reach my oncologist as well because she was not in clinic that day.


This is the kind of frustrating wall I have come up against on several occasions having (1) a rare cancer and (2) a brilliant and passionate oncologist who, unfortunately, can’t be bothered to communicate with anyone.

Mucosal melanomas arise from various surfaces in the body (female urogenital tract, head and neck, anorectal, etc.) and as such require collaboration between those who specialize in the areas where the tumors are located and those who understand melanoma. Where do we, as MM patients, fit in? Many cancers have one provider who eats, sleeps and breathes their type of cancer. Not MM. Some of us have a primary oncologist specializing in the location of the primary tumor and others have melanoma specialists.  Many of these specialties have had little reason to collaborate with one another in the past and I’ve personally been disappointed to find that, at least at MDACC they are rather comfortable in their silos and very uncertain, even confused, about stepping outside that comfort zone for the best interest of the patient. This is surprising, given that this is one of the largest and best cancer centers in the world.

Once again, I am reminded why MDACC was a challenge in the first place. Treating MM, particularly in a remote city from where we live, as many of us are required to do, can be very frustrating, very time consuming, and highly resource consuming; And, frankly, the current lack of consensus and poor communication between providers is dangerous to patients with such aggressive and difficult to treat cancer.

Once again, I’m asked to just wait. Wait for the specialists to finally communicate with one another and figure out what to do. Wait for them to respond to my messages and calls. Wait for my liver to improve. Wait for research to shed more light on what can help me. So here I remain, in limbo.

Tuesday, November 1, 2016

The Reign of Regret


This most recent blow to my plan of treatment has brought me back to MD Anderson in Houston. I am reminded after spending a full day in the belly of this large hospital that things move very slowly and very methodically here. It is very far from home. It is also one of the best places in the world for cancer treatment. I had my first appointment with Dr. Patel, after about a four month break to get treatment at home, and heard her work through a complex and well considered plan for my treatment. I am to see several specialists in the coming weeks including endocrinology, radiation oncology, and a gynecological oncologist. I met with the same gynecological oncologist once before to discuss my tumor being inoperable. The current plan is to try to get more doses of the nivolumab before my liver gets too inflamed to (hopefully) shrink the tumor... again... to get it operable... again. I say 'again' because, as it turns out, right before the first steroid taper that I had back home, when it had shrunk a considerable amount, it would have been operable. The cascade of regret I've had after learning this has been overwhelming. Why was Dr. Bauer refusing to communicate with the big guys at MD Anderson? Why didn't Dr. Patel follow up about surgery when I sent them a message to let them know the treatment was shrinking it? Why did I forget that this was the plan all along?
I can come up with many answers to those questions. They are followed by lots of "should haves." But none of them change that the window may have closed for good. And, unfortunately, reopening that window requires a whole lot of "IFs". 

This is the situation many people with cancer find themselves in time and time again. "Why," "should," and "if" follow us everywhere, shouting their claims without rest, even showing up in our dreams. It takes constant vigilance to remember that they are not real and when unchecked, pull us away from our actual lives and our chance at contentment. 

Here is my biggest challenge today. Let go of the "why" and the "should" and focus instead on the gratitude I have for possibly getting and chance to reopen the window- the hope that can be found in the "if."

If my liver holds on for more treatments... 
If the nivolumab works on its own to shrink the tumor again... 
If it's then safely operable... 

Thursday, October 27, 2016

And then a trip and fall backward

I went in for my second planned infusion of Opdivo today, nervous because of the symptoms I'd been experiencing already from just one dose. The symptoms alone I could handle, that they might mean my liver was showing signs of trouble again I could not. Sure enough, I learned at the visit that my liver-related labs showed problems again, significant enough to be denied any more of the treatment and to be put on a high dose steroid regimen... again. Last time I had a steroid regimen and my immune system was essentially shut down, the tumor grew quite a lot. I fear that this may happen again. But what scares me the most is that I will never be able to have this type of immunotherapy again. 

It's as if after my diagnosis I was falling, and by chance landed on some golden magic carpet and thought I was going to stay there, safely, only to have it pulled out from under me and now I'm falling again. Immunotherapy was actually working. Something that's incredibly rare in the world of mucosal melanoma. I had a good shot. But it would have killed me before the cancer could. Now, I have to rely on the hope that my immune system will retain some kind ofmemory  for the notes of a song it's only just learned. And that the steroids help to repair my liver but don't work so well that they erase the memories, too. 

I meet with a radiation oncologist on Monday to see if I'm eligible for radiation, which has shown promise with mucosal melanoma when in combination with immunotherapy (so I'm not sure where that puts me). I will go back to MD Anderson for their opinion as well. And now we will look for research trials. The T cell study that was my "back up" involves immunotherapy, unfortunately. I am also told that I will be ineligible for trials for new lower toxicity immunotherapies because of my adverse liver reaction. 

I will keep you posted as I learn more.

UPDATE: Dr Patel (MD Anderson) called me today and said she has a different plan that involves not taking steroids yet but keeping a close watch and letting me have more Opdivo and hope things don't get too high. She also said I'm not excluded from trying other immune therapies. She's pretty much taking over, and has some other ideas for a things I can do. I needed to hear this! She's willing to work with this to maximize my time getting this helpful treatment 😆. 

Friday, October 14, 2016

... And one step back


Yesterday was my greatly anticipated appointment with my oncologist to find out 1) the results of my most recent scan and 2) the plan of action for my steroid taper and resumption of treatment. 
Unfortunately, he did not walk through the door and immediately say "good news on the scans" as I know him to do in any case that involves great news. I know this because I've experienced it at least once first hand and also a number of times as an unwilling bystander, thanks to the paper thin walls at the clinic (they really should do something about that). Instead, he asked about some of my side effects and symptoms first and then started in- "two things on the scans...". Let me pause to emphasize here that when you are waiting for a result like this, every word and syllable left waiting for the actual result to fall on your ears can feel like a century. I'm recreating just a fraction of what it feels like here. Then, the meaning behind those introductory words are processed with rapid speed and the words are matched to all the possible outcomes they might be introducing. This is possible because each moment is truly a slower version of time. "Two things" were not the first two words I was hoping to hear, but not the worst way for that conversation to begin. He continued, explaining that the first thing is that there is NO VISIBLE SPREAD! This is excellent news that I unfortunately, at the time, allowed to be overshadowed by the next thing he said. However, time to digest has granted me the advantage of seeing the importance of this "first thing." To make it clear to you now, my immune system, despite being essentially shut down for the greater part of two months, was active enough to prevent the cancer from setting up shop in any new locations. Major relief. Major news. This is very, very good. And now on to the "second thing." The remaining tumor (only one) that had seen such dramatic shrinking while on the combination treatment has grown again during the steroid taper. It's not as large as it was before treatment started, but if it started as a lemon, and shrunk to a walnut, it's now somewhere around a small lime. This is not entirely surprising considering the way the immune therapies work and the purpose of the steroid taper, but we were hopeful that things would at least remain stable during the taper. They did not. This is not terrible news but not great news. 

Now - on to the plan, which hinges entirely on the liver. This part gets data and detail heavy so you can skip to the end at any time if you want the quick summary. The immune attack on my liver, the sole reason for the steroid taper, was significant. He speculated that one more dose of the combination could have been life-threatening. The immune system is a powerful thing that once set against a target can inflict serious damage. Given the amount of steroid required to bring my liver labs down to normal and the high values of my liver labs, getting the fourth and final dose of the combination is not a reasonable option for me and could create another attack that, if not deadly itself, would require more steroids and more time off of treatment.  Not good. The alternative is to go ahead to the single agent. This single drug, Opdivo (nivolumab), has pretty a good success rate all on its own, particularly for widespread melanoma (but not necessarily large tumors). For large tumors, the best results seen are with the combination - like the results I saw before the steroids. This has lead researchers/oncologists to speculate that the combination is best for attacking established cancer and nivolumab alone is good for preventing spread (based on the differing cellular processes). What this means for me is that IF my liver holds on, and I will be very closely monitored this time, that this may lead to long-term stable cancer, which is a fair goal. However, to target the larger, inoperable tumor we may reach outside the box. There have been some recent studies that show the addition of radiation to a tumor, while getting immune therapies, can help the process. When you are priming the immune system to attack anything fishy and you shoot radiation at something to damage it, it makes it REALLY fishy. So, even if mucosal melanoma doesn't respond great to radiation alone, the combination of radiation AND immune therapies has been shown to have a "durable response." This was my oncologist's term. I have chosen to replace it with HOPE. Because HOPE is not lost here. Hope is still very much alive. As am I. 

I got my first dose of the single agent yesterday. I am completely off of steroids now (and getting my non-puffy face back). We wasted no time to get back on treatment, which I am very grateful for. It feels good to be back in treatment mode again! Right now the best case scenario is that my liver holds on, doesn't have any trouble and that the single drug, opdivo, works great. If I do radiation, hopefully that just helps the process even more and we see this thing go away. Forever. 

Summary - 
1.) The cancer did NOT spread during the steroid taper
2.) The tumor grew during the steroid taper         
3.) My liver can't handle more combination treatment so I have started single drug treatment
4.) I might be starting radiation soon
5.) This mixed news is, on the whole, good news 

Take home? The fight is not over... but... the fight is not over!! 

Thursday, September 29, 2016

A New Scan Looms

I'm nearing the end of my steroid taper and I'm so very happy to report that the negative side effects are wearing off. However, it's unfortunate that the more positive effects are wearing off, too. For example, while I'm finally sleeping a full night- I also have a hard time getting out of bed to feed the horses and have little energy to face the day. I'm also finding that I can't carry quite as full a water bucket around the farm as I could on the high dose! Finally, the feelings of well being and contentment are slowly melting into feeling of anxiety- that too much time has passed without treatment. 

Today I have another lab and if all goes well again I will drop down to just 5mg per day tomorrow (for one week) and the next week will be no steroids at all. The week of no steroids will also be the week I get my first scans since the 'incredibly awesome shrinking tumor' scans. The upcoming scan has me incredibly nervous. I have no idea what to expect and I have to wait a full two more weeks (again, more time without treatment) to learn what is going on inside my body. My intuition is telling me that *something* is still going on (that I'm not "NED" or "no evidence of disease") but the big question remains- did the cancer remain stable while I was on the steroids to save my liver? Did the treatment miraculously continue to shrink the tumor? Or did the steroids put the brakes on the immune system enough to let cancer gain the upper hand again. And, if so, what does that mean? The treatment plan depends, of course, on this result. 

I know that I can, at least in part, blame the steroid taper itself for my anxiety; high dose steroids generally cause a 'good' mood and when removed can rebound to a 'bad' mood for a time. Also, there has been a great deal of loss in my greater circle lately. It seems every time I log in to Facebook I see another post about someone losing someone very dear to them. We have also lost several brave mucosal melanoma warriors in our MM Facebook group in the last couple of weeks. When I was first diagnosed I talk about allowing myself to be surrounded by thoughts of death but in this case it is quite literally all around. 

For now, I am turning back to my tried and true methods of stress reduction, healing thoughts and spending time doing things I enjoy and wait for the wave of anxiety to land on the shore and dissipate. I may also be spending less time on Facebook, at least for now, but you can be certain I will update you with any changes or after my looming scans in a couple of weeks. 

Finally, I am so grateful that I will be turning my attention to life and moving forward next week as my one and only sister is getting married! I look forward to a week of family and fun and celebration. How great it is that life goes on and good things continue to happen to people - no matter what we worry about or what looms around us. We always have the better parts of life to set our gaze on. 

Saturday, September 17, 2016

The Bald Truth


If you were to do a free association test with the word cancer, likely one of the first things that would come up is being bald. Naturally, one of the first things I wondered about when I was diagnosed with mucosal melanoma was whether or not I would have to loose my hair. My long hair has always been a big deal to me. With the exception of the mushroom cut disaster of ‘93 my hair has been at or below my shoulders since it first made its way there, which my family can tell you took a rather long time! Despite the gravity of my diagnosis and the comparative frivolity of a thing like hair it really did bother me when I learned that I would have to go through a chemotherapy that would cause me to lose my hair. 
One of my most vivid memories from the early weeks after my diagnosis is from a moment when I was leaving the office after an appointment with my surgeon. There was a girl waiting for her ride at the top of the stairwell. She was standing alone in the hallway and was dressed in jeans and a normal shirt and was otherwise completely put together but there was her head… almost completely bald. No scarf, no wig, just a thin layer of fuzz on the top. She turned to us and smiled with confidence. Direct eye contact: bald head! It’s all I could see. I remember being slightly shocked that not only was she baring her fuzz-head in public but she appeared to be completely okay with it. She didn’t appear self-conscious at all. It made me feel so strongly that I was heading into a world that I had completely held foreign to myself and that I was completely unprepared for.  I did not want to be that girl. I did not want to be bald. 
When I started biochemotherapy at MD Anderson just a few weeks later I knew the hair loss was unavoidable. I didn’t know much about when or how, and Google searches didn’t help a great deal with those questions, but I did read that it can be easier with shorter hair so I got my second-ever above shoulder haircut the week I returned for my second round of treatment. Sure enough, the week I was there for my second round, strands started coming out every time I ran my fingers through my hair. It was kind of slow at first but it continued. Every time I washed my hair or brushed it or just grabbed it to put it up, more and more slid out. It’s like each strand was just waiting to be touched, to be given the sign that it was chosen to let go. First my part started widening, then the volume started flattening. My hair got on EVERYTHING!
For a time I went through a phase that I affectionately call my Benjamin Franklin phase. It’s just as attractive as it sounds! The hair on the top was nearly completely gone but I still had enough around the sides to give me some hair sticking out of a cap so I just went with it.  The most surprising thing to me during this phase was that I felt such a draft on my head at night! I could actually feel the air unit kick on, so I slept in a little cap. 
And WIGS! I did go wig shopping, before I even started the biochemotherapy. One time I walked into the wig shop and joked that I needed something for the (almost entirely bald) one-year-old that I had with me. She didn’t laugh. I bought one, but it didn’t really feel like me. They had convinced me it needed to be above the shoulders so it didn’t fray or get worn so the cut felt off. Then I bought another one. It was the full hair I never had before and I was excited to enjoy the hair I’d always wanted. But again, it just didn’t feel like me! I didn’t wear the wigs much. Once my hair was almost completely gone I cut the remaining strands very short and started wearing scarves. I must say this was the easiest and most comfortable choice! 
When my hair started to grow back it was pretty uneven so I went into a hair salon and asked someone to even things up. She was terribly sweet and chatted about all the short hairstyles I would get to try as she trimmed the 20 or so hairs on my head that were sticking out every which way. I felt a lot better after that and she didn’t charge me for the trim … 
Today, my hair has grown back, I believe, much the same as it was before. I have heard that for some people it gets thicker or curly but so far, it feels like I’m getting back to myself and it’s almost embarrassing how great that feels when IT’S JUST HAIR! But I’ve decided that it’s really ok to care about it. It’s a very difficult thing to not feel and look like yourself and hair is a huge part of that. However, after everything else that I have been through during this time, my perspective has taken a very dramatic shift. When I reflect back on that girl in the hallway I almost never think about her hair. What I think about now, and what is so vividly in my memory now, is her smile. I now know that bright, uncontained smile. She was leaving the oncology office and waiting for her ride after hearing good news. That was a ‘good news’ smile and something I have experienced and want to experience again and again. I now want to be the girl in the hallway, so badly. When you have that good news, you don’t care about hair, you don’t care about fuzz, you are on top of the world and you just smile, bald and unafraid.

Friday, September 16, 2016

It's a full moon!


I just got word today that my liver is holding on just fine so I get to taper one more step down off the prednisone. This would put me at 10 mg per day which I've heard is when a lot of the side effects start to wear off. I'm so, so glad! Not only is it very important that I get back on treatment ASAP and this is one step closer, but also these side effects are getting pretty old!

At this point with the prednisone I've probably gained about 5 pounds, mostly in my face and stomach (no lie!). I'm experiencing what's called 'moon face.' It's hard enough to recognize myself with the super short hair and no freckles but now my once rather cheek bony long face is full and round in the cheek and mouth area and totally freaking me out! I also have pressure behind my eyes and my knees feel wobbly and weak. 

Other things I've been experiencing are a completely insatiable appetite for ALL THE FOOD and an inability to sleep more than about 5 hours per night. Granted, I've enjoyed my time from 1-3am that I'm awake at my computer to some extent (I've been rather productive!) but I completely hit an energy wall around 3pm and struggle to stay awake until 9pm (which I do, so I don't wake up for my day even earlier!).

Well, that's all for now. Everyone go out and enjoy the *actual* full moon outside tonight :)

Please note- After each taper step down I have a couple days of feeling extra tired and grumpy so if you see me out this weekend (I'll actually be out and about in Louisville tomorrow!!) please forgive my (not so) long (anymore) face! 

Friday, September 9, 2016

Back to Plans

There's just something about back to school season. It's always been my favorite time of year. Shopping for new pens and binders, getting all of my new syllabi/schedules and, probably my most favorite, making PLANS for the new school year. This year I'm allowing myself to get swept up in all of that once again. 

Yes, I've been indulging in the rich, juicy brain quenching habit of PLANNING and it feels great. Little James has started “school” a couple of days per week now giving me regular, structured time at home and living life on my own schedule again for once, even if just for a few hours. With this time, I have allowed myself to indulge in some ‘school year’ scheduling – to do lists, events for the fall, I've even allowed myself to do some academic and career planning! For someone who just a few months ago thought, with good reason, that I might not even be here on this day to exist, let alone make plans, this has been such a great joy to me that I have literally cried happy tears on multiple occasions this past week.

However, I have also developed over the past several months a deep respect and deference the fact that plans are simply that – an intention, or a scheme that we create. Never before had I been forced to stare at all of the plans I had built up for my future and realize that there isn’t a single one that is guaranteed. For any of us. Truly, plans are a luxury, and an indulgence that should be appreciated and valued and certainly not be taken for granted.

With cancer, it does not mean that you can’t make plans, it just means that they will most likely change, and sometimes very dramatically. For some, the only plans you might have are ‘what are the next steps,’ ‘when is the next treatment or scan,’ and ‘what shall I do tomorrow.’
But it’s not just cancer. The reality is that none of us know what today will bring. None of us are guaranteed tomorrow, or at least the tomorrow we imagine.

And, perhaps more importantly, it's what you do when things don't go according to your plans that really matters. There is a struggle that happens when you try to fit your plans with what actually comes to pass. That struggle is all our own creation. We've created this plan, that we are blessed enough to believe might actually happen, and when it doesn’t we’ve created a tension – a fight within in ourselves when we try to match what we envision and what we actually see happen. This opens us up to a whole host of negative emotions and stress. All based on a privileged, blessed little plan that we truthfully have no business even making.   

But ah… the bliss of thinking about what could be and what we want to be. We certainly should not stop making plans. Go ahead and make them! Just put them in the right context. They are a privilege! And might not come to pass! Just give up the struggle.

Even through all of this I still believe that things often go a lot better than even our best-laid plans would do on their own. You just have to give reality a chance. 

Happy back to school, everyone.

Quick health update: My liver labs still haven’t returned to normal so the taper of the steroids is still on halt (until those return to baseline). Hopefully things have improved by today and I will get the go ahead to taper more before the weekend. For right now, the plan (there's that word) is taper through September, scans early October, restart treatment mid October. I’m impatient but I am hopeful that the treatments that I DID have are helpful enough to get me through this time, if not continue to work while things are halted.  

EDIT: just heard that my liver labs actually went back to normal! So I get to drop my prednisone down again tomorrow and hope that things stay good!

Monday, September 5, 2016

The case of the disappearing freckles


I'm beginning to not recognize the face I see in my mirror.

No, it isn't the super short hair or the temporary 'moon face' from the high dose steroids (although those are both certainly looks that I never expected to see there). The reason is decidedly more... odd... and is certainly the most fascinating side effect from my immune therapy treatment that I've experienced so far. Right now, as I sit here typing away, my freckles are literally disappearing from my skin.

Now -- I have had freckles since I was very little. My dad has had rather freckly skin and I inherited some of that. I have a scattering of them on my arms and occasionally they are noticeable on my knees and shoulders. On my face, however, I have them year round. It's just part of my face. It's who I am. They are generally pretty mellow, especially throughout the winter, but the summer sun has always pulled their darkness up to the surface, betraying me for enjoying even a brief moment of sun worship. After my return from St. Lucia, however, I noticed something strange happen where I got the bad sunburn (after the accidental mud wash fiasco). When the sunburn began to clear, so did my freckles...

Wait.. what?

The disappearing act started in the places that had a direct sunburn after my trip. The redness, instead of fading to tan or freckles, as usual, faded to a pale white. I thought that might be the end of it. My shoulders had peeled pretty badly as well.  More recently, however, I started noticing what I first thought were more freckles around the thin areas of skin of my eyes and ears. However, I'm now realizing that those are just more noticeable now because I HAVE NO OTHERS. They have packed up and left my face. This is very strange, folks. I have never in my life seen myself without freckles, even in my makeup they still shine on through.

Now, let's take a quick jump over to my forearms and you can see an even more interesting dance play out. What first appeared as small white blotches over the backs of my hands and down my arms are beginning to spread outwardly, like an unraveling of anti-color, and in the path of this whiteness I'm left with clear, unfreckled skin. Just... skin, perhaps a few dots of small moles here and there. At a glance, it actually appears as though I have more freckles on my arms because they are blotchy, but I'm realizing now the darker areas are simply the remains of the 'uncleared' portions of skin. Those little, layered piles of pigment that used to always dot the backs of my arms are vanishing in the wake of the spreading pale. 

Where are they going?  What is this mass exodus?

The surprising answer is that it appears that they are being 'treated.'  As a side effect of this treatment, it's referred to as 'depigmentation.'

Freckles are, essentially, changes in pigmentation related to cells, called melanocytes, that overproduce melanin granules. Melanocytes. Oh that word. That word has an extremely powerful meaning for me. Melanocytes are the very cells from which malignant melanoma develops. These cells exist in the skin and also other mucosal surfaces within the body - where my mucosal melanoma originated.

I'll let the rest of you connect the disappearing dots on this one. 
Next mystery?  Are my two life-time member lip moles really plotting their escape from my face? They look to be about to make a move! Stay tuned to see how this one plays out.  I'll leave you with a final fun fact? A mole is sometimes referred to as a Melanocytic Nevus. (Bye!)

Wednesday, August 31, 2016

The taper begins

A quick health update. Got a text message (what service!) from my onc this morning saying that my liver levels have improved enough to start the slow tapering of my steroid medications. Woo hoo! Right now the plan is to taper these and continue to watch my labs improve, then scan again in late September and decide on one more combination dose or straight to the every other week single agent. 

Today I feel that I've begun to find somewhat of a balance with the high dose steroids. I had to restart anti-nausea meds to get through lunch without feeling sick and I'm very bloated. ZzQuil gave me a little extra sleep last night and didn't make me too groggy this morning but it was a little hard to get going and I'm still a pretty tired momma. Sitting at a Starbucks trying to remedy that as I type! Miles better than yesterday, though. 

A strange muscle weakness has started in my knees - I was warned about this with the steroids. Seems strange as steroids are generally associated with strength. 

Just wanted to give you guys an update and check in! It's a lovely sunny day here in Nashville and James is having his first (half) day of Mother's Day Out while I get a couple of things done.

Love to you all,


Friday, August 26, 2016

A health and treatment update 8 26 16

I wanted to post a lengthier update on my health to fill in some of the gaps I left with my quick post and to let you know how I’m doing. My list of other type of posts with musings on what I’ve been through and what I’ve learned keeps growing – one might follow tomorrow but I figured the health update might take up enough of your time today :)

Firstly, I’ve been taking rather high dose Prednisone since Tuesday evening (60mg, 2x/day). The primary concern was two of my liver related lab results from my pre-treatment labs that I did on Monday. Leading up to this I had had several symptoms that I assumed were related more to travel fatigue and other things but turns out can be related a lot to liver trouble. Dry mouth, fatigue, dark urine, fever and chills, extreme night sweats, even the low appetite and nausea and vomiting (although that was likely due in part to a separate attack on my gastrointestinal linings). In general, I felt like I had a slow onset flu – even thought I might have Zika! And I believe it began on the day I got my sunburn in St. Lucia on the boat and took Dramamine because I attributed lots of sleeping and fatigue to the Dramamine for a while.  Because there is no concern of cancer in my liver and because my prior liver labs were normal, this is almost guaranteed to be a result of the immune therapy combination treatment that I am on. The other concerning labs (though also not surprising) is that my thyroid has followed the typical immune attack pattern of hyperthyroid to hypothyroid indicators and I require treatment, possibly for the rest of my life (but hey – I’ll take it!)

What all of this tells us is that my immune system is in HIGH, HIGH gear. This is NOT a bad thing when it comes to this type of immune therapy treatment. In fact, the goal is to create a state of “brakes off” immune healing. We already know that the treatment is working well for me thanks to the glorious interim scan results (which I can still hardly believe). I have asked Dr. Bauer (my very communicative and intelligent local medical oncologist) whether we can do another scan now but he does not think exposing me to more radiation is necessary and has agreed to take the stance that we can assume at this point it has already shrunk more (and possibly even my highly optimistic view that it is ALREADY toast).  So, enter the steroids.. they put the brakes on the immune system. So… we took some specific brakes OFF with the treatment and now they put some general (non-specific) brakes back ON. So, what the steroids do is CALM DOWN this high gear. What that has meant for me so far is, within 24 hours (!) less fatigue, returned appetite and no nausea/vomiting, and no more fever and chills. Now that it is a few days later I’m already getting even more energy back and had almost no night sweats last night. Still a bit of dry mouth and a couple of other things but the relief is wonderful and I’m so, so grateful to my family for stepping up and stepping in at a moment’s notice, as always, to help with James when I wasn’t feeling very capable including Danny, Junior, Kelly, Lydia, and my mom over these past few days. You guys are so important and valued, so thank you again and again. 

What all of this tells us is NOT that my treatment is going to immediately stop working on what it is supposed to be working on. A few things I DO know is that the 1) my body was in high, high fight mode and 2) as I said, the specific brakes (that we want off) are still off because my body has already made memory T-cells that have been in there, healing this thing and are on the lookout for more. 3) Because the general brakes are being put on, there may be less of the fighters produced and circulating during steroid therapy and over time they may start to forget, given that I’ve really only had three rounds so far, but I don’t expect this to mean that things go right back to where we started before this treatment. In fact, this may hold steady or even shrink while I’m on the steroids. So now, it’s only a matter of getting the rest of my body stable enough to think about when to start back on the treatment and IF I’m even going to get the 4th and final combination dose vs. just starting right in on the single agent (which is less effective for existing tumors but much less toxic on the body). If I didn’t make clear before, after the 4 combination rounds, I would have switched to a single agent every two weeks for 2 years as long as it continued to be effective. So, we may just jump right into that if things don’t calm down in a big way. However, if my side effects are any indicator, things have really calmed down already!

So, best case scenario the labs today (Friday) show significant improvement and we can start titrating me off of these steroids (probably 8 weeks of titration!) and get things back on track. If not, I will be getting biweekly labs and as soon as there is improvement we will begin the titration. In the meantime I have high dose steroid side effects to look forward to such as energy (yay!), irritability (growl), sleepless nights (owl) and apparently muscle weakness (tell me how THAT makes sense with steroids!). So please bear with me if I seem strange and/or antsy. I will be making lots of extra time for stress management and relaxation to try to balance these things but it will likely be difficult to be perfectly pleasant all the time :)

Interestingly, the one major side effect I was continuously warned about with the immune therapy has STILL not occurred (knocking on all the wood around me) is Major! Disruptive! Explosive! diarrhea. Like 20 times a day I’d be running to a toilet… So, yes, I’m thrilled to report that I’m not suffering from that horrible affliction.

Just wanted to give everyone more information about what happened, what it means, and what the plan is. I’ve been getting a lot of questions, and reasonably so – I forget that you haven’t all been through the crash courses in medical oncology and immunotherapy that I have in the recent months!

The “take homes”

1)   I’m feeling so much better already!
2)   My family is awesome
3)   This isn’t the end of my treatment or the end of its effectiveness
4)   I don’t know yet exactly when I will get another scan or start treatment again, it depends on my labs 
5)   Yay for no explosive diarrhea 

Thanks for listening and caring!


Tuesday, August 23, 2016

No round 4, for now

The doctor chose to pull me from treatment and start steroids and synthyroid immediately. My labs from the day before showed very high liver numbers and since I don't have cancer in the liver it's likely treatment induced hepatitis. Best thing for me is to pause on treatment for now and work through these steroids to get things to calm down. 

I've continued to have nausea and lately I've been so tired (apparently I have treatment-induced hypothyroidism to thank). Other side effects so far are depigmentation (yes, I'm losing my freckles!!) and bad dry mouth. 

I've been assured that this is the safest plan of action moving forward. Will wait until my labs show the liver has recovered before we decide about returning to treatment. Will be weeks if I do, due to tapering steroids. Such a shame as its been working so well! Not to loose hope however, this cancer may already be toast and the hope is that this is just on hold until things recover a bit.

That's it for now, just a quick update! 

Friday, August 19, 2016

I Want To Be Heard


I've had a couple of recent 'mom wins' that have made life easier and helped me feel an ever-elusive feeling in parenthood- 'Hey, I got this.' I've needed some mom wins lately, after being apart from James a lot during treatments and my recent, restorative (but long) Caribbean get away. One 'win' is that I have finally landed upon my son's latest 'instructions manual.' Yes, my child requires instructions... I realize not all children do and I've accepted that he is a very special, complicated and wonderful creature who is a bit too exotic for me to intuit all of the time, hard as I try. Finding the instructions for my exotic creature hasn't always been easy and has involved a lot of trial and error. When the right instructions finally find us it feels like divine intervention; James' often come in the form of a well researched book that helps explain the 'sparkly' kids. Sparkly is hard. Sparkly is great.
Lately, I found 'Happiest toddler on the block' by Harvey Karp, M.D. This book has me making my own mini tantrums using something akin to 'cave man speak' (he calls it toddlerese) and probably looking rather silly in public- but, I tell you what... when I use it right? No tantrum. Not a one. The basic idea is that toddlers loose their ability to think clearly when they are upset and that responding to their wants and wishes won't cut it until they are 100% certain that you GET what they WANT and NOW.  Essentially, they want so much to be heard that simply being shown they are, indeed, heard is enough to calm them to think more rationally.

The other 'mom win' is that I've found a far-reaching wearable audio baby monitor (it even has vibrate mode) that I can use while busy in the field or barn with the horses or chickens. I used to avoid going to the barn during my son's nap or after he was in bed because with a toddler, a continual line of communication and monitoring is important for the secure feeling of both mom and tot. When he knows I can hear him, he will trust that I can run to his side if something were scary or wrong and I, hearing him, can trust that he is safe, despite being outside of my arms reach. I can use both of those arms to attend to the other creatures on the farm that need me. An open line of communication is key to trusting, loving relationships across the board.   

Lately I have been spending a lot of time considering prayer. My previous post about 'the helpers' had quite a bit to do with prayer. An offer of prayer has been a gift I have gotten to open so often lately, expressed both in person and in the pages of the daily cards that come in the mail. I know there are several prayer groups that continue to honor me with their time, week after week. I also know that countless more individuals also honor me with their thoughts and prayers on a daily basis. I have also attended the healing prayer service in the chapel in my church almost weekly.

Prior to my diagnosis of Mucosal Melanoma this January I considered prayer to be largely for two purposes; to express gratitude and to make wishes known. I never considered prayer to be for the purpose of shifting the great divine plan for our lives. To be clear, I still do not. I believe that there is a plan and, should we choose to feel gratitude for it, it can be wonderful and spectacular. Every morning when I wake up, I try to make one of the first thoughts I have to be "Thank you for another day." I encourage you to try this. However, beyond this, my own understanding and appreciation of prayer have graduated to a greater understanding since January. I have experienced personally, and witnessed, functions of prayer that I never fully understood, or appreciated and that I still have much to learn about.

I WANT. We are not very different than we were when we were all toddlers. Wanting something very badly and not getting it is hard for anyone of any age. The threshold for what causes this and how we express it may change a lot across our lives but the basic principle is the same. It is so very difficult to think with clarity about our circumstances when our wants don't match our foreseeable receivables. Using prayer to either make our wishes known to the universe or ask for peace can shake up this problem and calm us enough that we can think more rationally and be open to finding or accepting the things you might need. This may come in the form of searching online for a book about sparkly toddlers, or it can help you be open when people come into your life offering help. When you are upset and feeling independent and defiant against life, including cancer, it can be hard to accept the form in which help comes to you, or harder yet -- asking for it. Also, when calm you are more capable, and accepting, of seeing, through adversity, what might be a 'calling' or 'purpose.'  Finally, it's been in moments of clarity like this that some of my more helpful mantras have come to me. A favorite, "You're not going to die today: You're not going to die tomorrow."

TO BE HEARD. We want to know that someone or something is out there to hear us. That we aren't simply shouting our wants into a void, without even deaf ears to fall on. We don't want to feel alone. We want to know that we can be heard, and right away, even if those arms are otherwise occupied helping other creatures. Here again, an open line of communication is key to trusting, loving relationships. Prayer helps us to not feel alone. Similarly, knowing that others are thinking about and praying for us strengthens our voice, strengthens our resolve, and helps us feel supported by our family, friends and community. We feel heard, but multiplied by the hundreds of other voices that are singing in unison with our own. There is no dark void. The ears are not deaf.

We are heard.

Saturday, August 13, 2016

How I got out of that dark place & The Helpers



Let me be clear about where “the dark place” is. The dark place is where I spent a good bit of my time after being diagnosed. Mostly when I was alone or not busy. What did it look like? WellI ended up sitting in a lot of strange places. Kitchen counters, middles of floors, in the grass—I was quite literally overtaken by gravity wherever I may be at that time, as the weight of the “woe is me” bared down on my shoulders.  There were sudden bouts of ugly crying which, somehow, blessedly,my 1-year-old didn’t see as abnormal. Instead he continued cheerfully flinging dirt around or running away from me as fast as he could. I saw death and finality EVERYWHERE I turned. Nightly news? Death. Roadkill? Death. The end of a song.Death! I allowed it to encircle my space like Eyore’s cloud but punctuated with turkey buzzards instead of raindrops. It also happened when I allowed myself to stare at my son and attempt to use every fiber of my creativity to imagine what he would look like when he was 5, 10 or even 50, knowing I would never get a chance to see it with my physical eyes. What is surprising about this dark place is that, while I worked very diligently and with great effort to get up and out, once I found myself free I turned around and realized I’d only come one small step. Indeed,it’s now possible to slip back down with one misstep and fling myself back out with just a shake and shudder of my shoulders.  

While the arduous process of freeing myself of this place was a very personal odyssey in many respects, (and I plan to write several other posts to highlight some of the things I felt helped me along in this effort) I feel that it is most appropriate to first acknowledge that the ability to even begin this journey is largely due to the solid foundation of emotional, spiritual and functional support provided by my community –many members of which I had not even met. The volume and persistence of support that has been offered to me has been the most surprising part of this journey. I have never in my life felt so loved and lifted up. Since I was first diagnosed I have been getting calls, cards and messages that people are praying for me and every single day I go to the mailbox I have at least one note of support or kind hello. Every. singledaythat the mail comes.  What is truly a blessing it that I have been given the opportunity to see the best side of people every day, time and time again. It's a great gift. 

It is amazing what strangers who even guess at what I’m facing will do. The meals from church (the church that I had only recently started attending) and calls from the clergy began right away. I have been offered countless kind words, had more than one cab driver pray for me in their car. I have had people in the service industry refuse that I pay for my hair cut or massage – All perfect strangers who sometimes know only that I am facing something difficult. 

From people I know, I have received so many gifts and flowers, even with those I have lost touch with over the years. Not long ago, after weeks of daily cards from my sorority sisters, most of whom I haven't spoken to in years, I received a box filled with the most generous gifts and extremely generous gift certificates from them to Whole Foods and Southwest Airlines and even a very generous donation to the Susan Fazio (Mucosal Melanoma) Research Foundation in my name. I had happy tears as I went through the box, spending so much time considering each item that I had to finish opening it in three separate sessions! I have had several people reach out to me through social media and offer an amazing amount of support and resources and time and friendly words. I have even had the opportunity to make peace about the past and rekindle old friendship sparks.  

My family and close friends have been a gargantuan, solid, sheet rock for me. Even now, I can relax while on vacation knowing my son is with my parents who are happily entertaining him so Danny and I can get a restorative break (even after weeks of both of them spending half of their time at our house doing the same thing while we are there). James is so well cared for by all of our family that I’m worried he’s going to grow up thinking that every child gets eight parents/playmates all to themselves. My dad has been our farm hand and James’ best friend and my mother flutters around the house cleaning constantly so I don’t have to – my water glass keeps going mysteriously missing after she swoops it up to clean it before I’m even finished. My sister has escorted me to several appointments and trips to Houston and even scratched my nose when I was getting two-armed leukapheresis for three hours and couldn’t move to do so.  My friends have offered me hours of “text” support and come over to cook dinners and entertain me when I’m low on energy or wanting to get out of the house. The love and support offered by my husband? That’s a separate blog entry entirely. 

The biggest challenge for me with all of this support? Accepting the help! Partly, it was that accepting help in the beginning meant acknowledging that life had to change and it was also aconstant reminder that it had. Also, I’m a pretty independent person to start with – a favorite family story is me insisting “My do it!” to everything at a young age. And… let’s be honest it’s also difficult to have parents essentially living with you part-time when you spent your childhood (at minimum the entirety of high school) looking forward to living without your parents. But, all things aside, I don’t know what I would do without their helpand love

I remember hearing within the last few years, in the wake of several human-perpetrated acts of violence and destruction, thatit can be therapeutic to focus on the helpers. It is in our nature to help and to give. For me, during my disaster, I can focus on these helpers and breathe more easily. I get to see their glowing, wonderful souls shine through as they give and help and give, and repeat. 


Thank you



**Disclaimer**  I feel that I should be clear that I’m not licensed as a clinical psychologist yet and that this blog is intended for personal shares and not based at all on actual science or research unless otherwise noted. Please do not consider any of my blog posts a professional recommendation.