Reboot...

It's not what I wanted to hear...they found cancerous cells in my bone marrow biopsy results. I sat there and calmly absorbed the news because I knew freaking out at that moment would do nothing for me. Part of me was in shock because I don't feel like I'm getting sick. But I didn't even know I was sick last year until I was really sick, and that's just the nature of this sneaky disease. Left to my own devices, I'd likely push myself right back into the hospital, unaware of what's going on inside my body. The past few weeks have come with some setbacks and challenges, but I am staying hopeful that all will turn out okay.

I went back to Emory May 10th for my year post transplant bone marrow biopsy, axial skeletal scan and bone density scan and then returned on the 24th for my results. The bone scans came back without problems, so that is good news; however, my biopsy did not return the results for which I was hoping. They found a chromosomal abnormality - the same one that resulted in my stage 3, high risk diagnosis last year (t4:14). They told me the plan is to do two cycles of more intensive therapy followed by some more intensive maintenance than what I have been doing. I'll be going back to RVD (Revlimid, Velcade and Dexamethasone), which gave me very favorable results last year. Previously my maintenance consisted of Velcade only, so we're ramping things up a bit. I'll be on higher doses of everything for the first couple of cycles, and then we'll scale the dosage down for maintenance.

I was feeling okay about all of this until I received a call from my doctor here in Columbia on the 25th (the day after hearing my results at Emory) stating that the blood tests performed at SCOA on the 23rd looked much worse than what Emory had used from the 10th. My MSpike went from .1 to .7 in two weeks, and this is a sign the disease is progressing very quickly, which is the nature of my particular diagnosis. The moment I received that call was the moment everything sunk in for me - here we go again. Thankfully I am monitored closely and this has all been caught early, before the disease has had time to do too much damage. The doctors still believe they can get this resolved with two cycles of more intensive therapy, so that is what we are starting with. If I need more after we assess blood work, we'll do more.

I've traipsed through the myriad of emotions I imagine come with hearing your cancer is back after only a year post transplant, just 9 months since receiving word you achieved remission. Devastation, anger, disbelief. I've made my way to acceptance because feeling sorry for myself, getting pissed and acting like this isn't happening aren't realistic ways of attacking this situation. Even after hearing I achieved remission I knew the chance of recurrence was very high, so I prepared myself the best I could for the chance of hearing the news, but of course I hoped it wouldn't happen this quickly. Now that the circumstance has presented itself, although my diagnosis is not as bad at this point as it was last year, the news has hit me a little harder than it did last January after my initial diagnosis. Maybe it's because I've had so long to let the reality of all of this really sink in. Last year I didn't have time to think about anything before starting treatments and preparing for my transplant. Now I have taken back as much of my life as possible only to have that compromised again, and it has taken me some time to accept that fate. I think it's understandable and normal in this situation, though.

This isn't just happening to me, though; it's happening to everyone who cares about me and I know it's hard for them, too. I sit here and wonder whether it's harder for me to actually have to go through this or if it's harder for the people who love me to have to watch me go through this. I don't have much control over what happens to me. I can choose to stand up and fight my ass off and refuse anything but positive results. I have that much control over my situation. But the people around me have no control, and I imagine it leaves them feeling pretty helpless. No one can change what's happening to me, but the people in my life do a really good job of making me happy regardless of my situation. I'm lucky to be surrounded by such amazing people, whether it's family, friends or coworkers. They help me remember that while the whole cancer thing sucks, I have much more positive areas to focus my attention.

So rather than dwell on the negative, I'm doing my best to focus on the good parts of my life. I'm not ignoring what is going on (it's kind of hard to ignore when you have to go to the oncologist no less than twice a week and fill your body with poison to hopefully get better), but I'm doing my best not to dwell on the shitty parts of life right now. Because I do have so much to be happy about.

I've been enjoying some wonderful time on the lake with my family. My husband sold one of his motorcycles to buy a boat and I must say it's been a wise investment. A pontoon is definitely more family friendly than a motorcycle (let's don't get too bummed for him - he still has two left in his brood). A little lake therapy is definitely helping my mood. We spent Memorial Day weekend at the lake with my family and it was filled with a lot of relaxation and laughter (brought on mostly by adult time playing Cards Against Humanity). It was exactly what we all needed.

My daughter is 2 1/2 now, and she's so much fun. Watching her imagination at work and personality grow each day truly astounds me. The stuff that comes out of her mouth keeps me laughing, although I REALLY have to watch what I say around her these days. Her selective hearing seems to only allow her to hear, absorb and repeat the particularly bad things I say. Shit and fuck happen to be two of my favorite words, so I'm trying hard to get my ass in gear. The steroids I'm taking don't aid my efforts. At all. This is also why you'll rarely, if ever, see me drink in front of my child. Two drinks in and I start using "fuck" like a comma.

What I'm most looking forward to this summer is a trip my husband and I are taking to St. Lucia (all that lake time will help me work on my base tan before this trip - I'm not trying to get burned and add Melanoma to my list of cancers). My doctors are working my chemo schedule around my trip, so I should be in good shape for it. We leave in a little over five weeks, and I get more excited as each day passes. I planned this trip last year as I sat in the chemo room for hours at a time to give me a positive focus and something to look forward to in the coming year. Since I had the time on my hands to actually do some proper planning, we're not going the all inclusive route for this trip. I'm looking forward to doing a lot of exploring while we're there. I had hoped we'd be able to use this trip to celebrate a year cancer free, but instead we'll just use it to celebrate life in general and further our appreciation of the beauty the world has to offer. I'm looking forward to hiking the rainforest and the Pitons, taking a sail, lounging on the beach, and enjoying the stunning views from our villa for the week.

The whole cancer thing has really put mortality into perspective for me. I don't know if I'll be here for 2 more years or 50, and if cancer will be my demise - who knows? I do know that I'm going to make the most of the time I do have because I am in complete control of how I choose to live my life while I'm here. I don't have time to sulk about my situation. I have to move on, continue living my life and making memories with the people I love while I can. I know I'll have bad days; everyone has bad days, regardless of their personal situation. It's my responsibility to move past the bad and soak in all the good. That, I can control.

We'll All Float On Okay

In December when my doctor told me about the abnormalities in my blood work, I didn’t immediately have a reaction to the news. I stayed numb for a few days, and then as the two weeks passed between my appointment in Columbia and my impending appointment at Emory, I grew increasingly anxious.

I started thinking about what might happen if the cancer was already coming back, which led me to think maybe I’ll never really be better, and eventually my thoughts became pretty grim. I started to wonder if I’d die before Olivia could really remember me or know how much I love her. I know that’s morbid, but I feel like if I’m writing about my experience, I need to be honest with people about it.  I try to stay as positive as I can, but in some situations it is impossible to stay positive 100 percent of the time. I don’t spend much time dwelling on the negative because that won’t benefit me at all, but I do have that occasional negative thought. That’s reality.

I found a little solace when, after some strategic Googling, I stumbled across an article in the Myeloma Beacon from 2013 about an M spike following transplants actually being a good sign. Research has shown a correlation of longer remission periods/survival rates if the new spike is different than the original. Typically most information I find on the internet is troubling, so it was nice to see that there was a possibility of good news.

Lucky for me, I received positive news during my appointment on the 22^nd. The doctor is of the impression that the spike seen in my blood work is actually production of healthy cells. Emory had blood work from the week before this M spike appeared and the doctor said they saw absolutely nothing troubling. It took a few days for them to run labs on the blood work from my most recent visit, but they didn’t find any cause for concern. When blood work was run at my doctor in Columbia the week following my Emory appointment, my M spike came back negative. So all is well for now!

Fast forward to January…the 17th marked a year since my initial diagnosis. My emotions have been all over the place lately, thinking about where I was a year ago compared to where I am now. As John and I rode home from an overnight trip to Charlotte on the 17th, I realized it had been a year to the day since I was first admitted to the hospital, almost down to the hour that I had realized they admitted me to the oncology floor. 

All sorts of emotions rushed over me as I thought about how I felt at that moment last year compared to how happy I had been that weekend. I wanted to scream, cry and laugh all at the same time. It's hard to explain the way one night away in a perfect bed and breakfast feels when you're with your favorite person in the entire world, you have an amazing dinner out, and you get to hang out with some truly fun people. It's different than it was before. The weekend was perfection (minus the rude Panthers fan who got all up in my face flipping me off with both hands simply because I was walking to my seat in the stadium - classless asshole). 

Tuesday the 19th marked a year since my first bone marrow biopsy, and Thursday the 21st marked a year since my initial diagnosis. I’ve come a long way since then, and I’m changed forever, whether I like it or not. Some of the change has been positive. I’m humbled and grateful to be here every day and to be able to spend time with friends and family. I should have felt this way prior to this ordeal, and maybe I thought I felt that way previously, but in reality I did not.

I’ve changed positively in other ways, too. Before I got sick, I never looked at myself in the mirror and felt like I was that pretty. I didn't think I was ugly, but I never thought I was anything that special. Cute - okay. But beautiful? No. That's a personal problem that I should have overcome long ago. So when I lost my hair this past summer, I was forced to look at myself - REALLY look at myself - both physically and emotionally. I finally grasped that beauty is made of so many things. Not to say I didn’t know this, I just hadn’t fully comprehended it in the past. Beauty is physical, no doubt. But it’s also strength, courage, humility and so much more.

I gained some newfound self-esteem the first time I looked in the mirror after all of my hair had fallen out. I wanted to put on some makeup because I knew it would make me feel somewhat normal, and I looked at myself so closely in that moment (I get really close to the mirror to put on eyeliner) and realized that I'm beautiful. I felt a little sad that I wasn’t exactly conscious of this before. My husband tells me that I finally see in myself what he's always known about me. It doesn’t hurt that I have a very nicely shaped head, so my baldness wasn’t too offensive. The first comments out of both my husband’s and brother’s mouths when they first saw me were regarding my nice, round head.

While I’m talking about how beautiful I am, I will mention that many people have complimented me on my glowing skin lately. Now, I realize that when I was sick my face lacked any sort of color; that’s what happens when your hemoglobin hangs out between 7 and 8 on the reg. Now that I’m back up to almost normal blood levels, I have a nice, rosy glow. I also have the clearest skin I’ve ever had in my life. I attribute this to chemo drying out my normally oily face. I counterbalance the dryness with a little moisturizing after I wash (I use nothing fancier than Neutrogena) and a lot of water intake (I have to drink the water for my kidney function, anyway).

So I’ve found the secret to beautiful skin, and it’s not Rodan + Fields. It’s a combination of chemo, Neutrogena and about 100 ounces of water a day. Turns out the chemo makes the regimen kind of expensive, so go ahead and stick to Rodan + Fields if that’s your thing because it’s probably cheaper. But Proactiv never made my skin look this good.

Getting back to emotional changes, I now appreciate the smallest things I sometimes took for granted in the past; but with the positive change also comes the anxiety of not knowing if or when I will get sick again. I try not to think about it often, but it's a reality I can't ignore. I know what happened in December will likely happen again, and there is a chance I will get bad news at some point. I have to be prepared for these things to occur, but I make a concerted effort not to focus on it.  Focusing on it will only harm me in the long run.

I’d rather live my life while I can rather than worry myself to the grave. It’s not like I’m spending my days dancing with leprechauns under rainbows, but the Grim Reaper isn’t hanging out on my shoulder either. I’ll admit that sometimes I need a reminder to get my head out of my ass. You can usually find me listening to "Float On" by Modest Mouse on repeat when I need a reminder that life will go on regardless of the bad shit that might happen along the way…“Bad news comes, don’t you worry even when it lands / Good news will work its way to all them plans.” I will find balance in my life.

The biggest change for me has been the general reprioritization of my life. John and I are no longer putting things off because we'll have time. The truth is, whether it's because of cancer or something else, we may not have time to do the things we want. If I feel like I need to change something in my life, I’m going to do what is in my power to change it. If we want to take a trip and make some memories, we are going to do it now, damn it.

This is all within reason, mind you. Ideally we would have won a billion dollars in the lottery, quit our jobs, and traveled the world while homeschooling Olivia and exposing her to many different cultures. Plus, with the way the candidates look for the 2016 election on both sides, it may be a good time to pack up and ship out. But alas, we only won $7.00. So we’ll be doing what we can within our means to make sure we have the best time we can and give our daughter the best life we can while we’re here.