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!)