It's The Final Countdown!

We are officially down to single digits in weeks… the final stretch!

 I can’t even begin to explain how excited I am, in case you couldn’t tell. This journey has definitely been an emotional one—one that started rocky (and throw up’y), anxious about the ‘what ifs’ and the unknowns, and finally excited as each week passes and I’ve received good health updates for both Taylor and I.

I’ve truly enjoyed these last couple months of pregnancy . From about 3 months up until this point, I’ve been feeling good, have been able to eat pretty normal (with the exception of some foods and most drinks), have had some energy, and have loved watching my sweet girl grow and move inside my belly. However, the morning sickness and lack of energy is beginning to creep back in (sad face), especially in the afternoons and evenings. I'm HOPEFUL it won't be near as bad as it was in the beginning but as each day passes, it slowly has been getting worse. The upside-- only 9 more week. Nine. More Weeks. I can do this! 

But the best part has been our health. If you’ve followed my pregnancy journey (or just follow my blog), then you know that I currently live with a chronic health condition—leukemia. While me having leukemia poses no risk to the baby, it poses a risk to me as I can’t undergo (normal) treatment while pregnant. It’s almost guaranteed that my type of leukemia will progress without treatment but the hope has been that it will slowly progress (which after taking a pretty big jump in the beginning, it has remained pretty steady since) to where I can go the full 9 months without treatment, safely have the baby, then immediately begin treatment again. This has been the case so far, which is so exciting! Assuming my latest test results come back good, I'll see my oncologist one more time at the end of February for more testing and if those results also come back good, then I'll for sure not have to undergo any treatment until after the baby arrives and won't need to be induced early for that reason. Fingers crossed this is the case! 

On a more exciting note, our sweet girl is doing great. One of the perks of being a high risk pregnancy is you get to see your baby a lot via ultrasound. We’ve had three so far and have two more scheduled—one at 32 weeks and the last at 36 weeks. It's always so reassuring and gives a peace of mind every time we see her on that screen looking healthy and perfect. She’s measuring a little further along than my original due date which means she'll either she’ll come a little early or she might be a little chunk :) 

These past few weeks we’ve enjoyed preparing for her big arrival. Her room is just about complete and I absolutely love it. 

I took my non-shopping husband to Target to register for some baby things and that was an experience. He was mind blown by some of the things that we’ll need and why we need them-- it's going to be so much fun watching him as a dad. :)  Up until a couple weeks ago, I had done such a good job suppressing the urge to buy baby clothes and accessories (aside from the basics). But after Christmas, I could wait no more and finally made my first splurge purchase and bought some of the cutest outfits. Eeek!! Little girl clothing is just so cute!! I’ve made a vow to not buy anymore clothes or accessories until at least after our showers and possibly until after she arrives. Let’s see how long that lasts. :)

Nine more weeks and I’ll be a mother of 2. God is good. <3 

Confession: 

Part of the reason why I've been feeling pretty good is because I've been taking Diclegis and Zantac since the beginning of my second trimester. They have both been my saving grace, up until this point anyways. I take Diclegis (4 times a day) and it usually keeps it the nausea at bay. I also have to take Zantac (2 times a day) because even when I do have an appetite, nearly all foods give me heartburn and acid reflux and made it near impossible to eat, that was until I started taking Zantac. I haven't had to take any anti-nausea meds in the past couple of months but have a feeling that will be changing pretty soon....

Because I deal with those issues, it's kept me from being that pregnant lady with her face shoved in a pint of ice cream. While part of that makes me sad because that should be one of the perks of being pregnant and growing a human inside your belly, on the plus side I haven't had to worry about gaining too much weight. I've gained 15 pounds so far and as you can tell from the pictures below, I don't look much different from my 26 week picture to my 30 week picture.  However, I'm fully expecting to pack on some pounds, especially in these final weeks. 

My Pregnancy Journey: The Uncut Version

So two weeks ago, I posted this on Facebook---

While I was very excited that I was FINALLY feeling some relief from the horrible pregnancy plague, also known as Hyperemesis, a big part of me was hesitant to be excited. That’s because I knew it was very likely that I was getting excited too soon, which turned out to be true. 

You see, the week prior, I went in for my monthly testing to check the status of my leukemia. They have to send this test off and it usually takes about 1-2 weeks before you get the results back.  I was expecting those results back any day and had a feeling that I wasn’t going to like the results. Not to get into too much detail, but in additional to the test that they have to send off, there is a simple blood test that they also do locally (where you know the results within hours) that can show red flags. I always check those results as soon as they are available and for the first time since being diagnosed, it showed those red flags. So I knew something was up, I was just left to wait for the real, definitive results.

If you follow my blog, then you know that around the time I found out I was pregnant (and after two months of stopping treatment), my leukemia showed signs of progressing. It went from half a percent to 2%. Not a HUGE jump, but still a sign of progression. We knew this was likely to happen, just so long as it happened slowly. That’s the best thing about this type of cancer—it’s slow growing. Many people have it for months or even years before its detected. That’s why some women choose to stop treatment to have children because the likelihood of it progressing to a very serious level within 9-12 months is slim.

The very next day after posting about how excited I was to FINALLY be feeling better and more like a ‘normal’ pregnant person, I got a call from my oncologist who told me what I didn’t want to hear. “Your numbers took a big jump. I’m sending you to the head of hematology at the UK Markey Cancer Center to get his opinion on where we go from here.” I went from .5%, to 2% in 2 months, to 15% in just 2 more months. That’s a very BIG jump very QUICK.

I was headed to a meeting for work when I got this call and after hanging up, I couldn’t contain my emotions and began to cry. Luckily I had another co-worker going to this meeting who was able to cover it for me so I changed my route and ended up in my driveway where I continued to cry, and cry. The cry wasn’t out of fear or worry, it was out of frustration. I knew what this meant. It meant that just as I was finally beginning to feel better it would be short lived because I would soon have to start treatment, which would make me feel sick again. I just wanted to be normal, feel normal, be able to work like normal, be able to take care of my home like normal, be able to spend time with my family like normal.

And to be completely honest, for a brief moment, my tears were for fear. Not for myself, but for my 8 year old sweet baby boy, Talon. We knew there was risk involved and challenges we'd have to go through for me to have more children, but it was a risk we felt confident and hopeful about. But what if we made the wrong choice? If something were to happen to me, I know it would be hard but I know my husband would eventually be okay, and my family would eventually be okay, but what about Talon? How selfish of me to have wanted another child so badly that it was worth risking him having to grow up without a mother. That is my biggest fear. And for a brief moment, that fear crossed my mind.

But then I pulled myself together. We knew it was likely that my numbers would progress. We hoped it would happen slowly to where I would never need treatment during pregnancy but we knew that was a possibility. And we knew if that were to happen, there is a couple of different options of treatment I could take that would be safe for the baby. We knew that if that point came, my oncologist would send me to the UK Markey Cancer Center to create a plan and go from there. So while all of this was definitely not wanted, I can’t say it was a surprise. We knew these were all possibilities and risks involved and the risks that we accepted when starting this journey. And this is where we are.

Before starting this journey, I reached out to other ladies in one of my CML support groups who have had or were also trying to have children. I remembered one in particular who actually had this very similar situation happen to her so I immediately reached out to her to ask how she was doing, how the baby was doing, and what actions she was taking to be sure she is able to safely deliver a healthy baby. Her response gave me so much hope and a sense of peace. She had started the treatment, which posed some challenges, but her and baby were doing well. She was having tests and doctors’ appointments about every week. She had found ways to cope with side effects of the treatment and had still been able to work. It was exactly what I needed to hear.

A week and a half later, my mother, husband and I traveled to Lexington to meet with this new doctor and learn what’s next. Having done so much research prior, I knew what was likely to happen next. I knew I would have to begin treatment, I knew I would have to deal with some bad side effects for the remainder of the pregnancy, but I knew it’s what had to be done and I was ready for it.

But what I didn’t anticipate was for this doctor to offer me something that I didn’t expect— time. While there is definitely reason to be concerned, we aren’t at ‘code red’, yet. While my numbers did take a big jump, I’m still in phase 1. There are 3 phases to CML. Phase one is chronic, phase two is accelerated, phase three is blast, which turns into a completely different type of cancer that becomes very aggressive and hard to treat. The goal is to keep my CML from going to phase 3. My doctor’s recommendation was so long as I’m in phase 1, do nothing except continue to test and monitor on a regular basis. Once I enter into phase 2 (which is very likely to happen at some point during this pregnancy), then I will begin treatment. He reassured me that the likelihood of this progressing to the blast phase during my pregnancy without treatment at all was slim, but I’ll start treatment before it gets to that point. This was like music to my ears. So at this point in time, we do nothing, just test and wait. So while I expected to leave that doctors appointment with a hand full of syringes for the injections I’d have to start giving myself each night, I instead left empty handed but also with a new sense of relief and hope.

So what does this all mean-- It means that it is still very likely that I’ll have to start treatment at some point during this pregnancy, but not today. And THAT makes me soooo excited because I have more time to enjoy being a somewhat normal pregnant person. Of course that could change at any moment, but I’m prepared for that. I’ll get my latest test results back later this week and that may show I need to start treatment. It’s likely that WON'T be the case and I’ll test again in 4-6 weeks and wait to see what those test results show, so on and so forth. So in my mind, I likely have a good 1-2 months (maybe even longer) before I’ll have to begin treatment. The longer I can hold off, the better. What is also likely is I’ll have this baby earlier than my due date. I’ll likely be induced as soon as it’s safe for the baby. That’s because even though the treatment I’ll be taking while pregnant is deemed safe for the baby, it’s not the most effective treatment for CML. It’s actually not a treatment, it’s an immunotherapy called Interferon. Typical treatment for CML is a targeted therapy in the form of a pill (it’s like chemo, but it only kills the ‘bad’ cells where chemo kills all cells). This can cause birth defects so it’s not recommended to take while pregnant, which is obviously why I haven’t been taking it since we decided to start this journey. But the immunotherapy is safe for the baby. It’s essentially a therapy that boosts your immune system so you can naturally fight off cancers. The goal of this treatment isn’t to actually treat the leukemia, just stop it from progressing until I can safely begin normal treatment again, which can happen after I have the baby.

While all of this might sound crazy and overwhelming and you wonder why anyone would put themselves through this, I am actually excited (again), hopeful, and at peace with where we are at this point in time. Aside from that one moment that one day a couple weeks ago, I’m not worried at all. Is it a false sense of hope? Maybe. But when I was diagnosed with leukemia three years ago, I decided I was going to live my life as ‘normal’ as possible, even though that meant facing a lot of challenges, and even though it would probably be anything but easy. And this is me doing just that. And if I know one thing, it’s that the only thing worrying will do is keep you from enjoying life, and ain’t nobody got time for that. <3

Confession:

I was really hesitant about writing this blog post. I definitely don’t want pity or for people to worry for me because this is a choice we made and risks we accepted. And to be honest, the less I have to think about these challenges, the easier. It’s just easier when people are asking how things are going, for me to answer “good” than go into all of these complicated details.  It’s just more fun to pretend I’m a ‘normal’ person going through the joys of pregnancy. It’s more fun to talk about how I now can drink unsweet tea (yay caffeine) and how we can’t wait to find out if we are having a boy or girl so we can begin shopping, or talk about how funny it is going to be to see TJ holding a baby, and just enjoy watching my belly get bigger and bigger as this little peanut continues to grow, than it is to talk about obstacles and challenges we have to face. But because there isn’t a What To Expect When You Have CML and Are Expecting manual, I made a vow to document this entire process from start to finish for other ladies who are in my shoes and who have CML and are thinking about having children one day. Good, bad, or otherwise, this is a part of my pregnancy journey. 

You can follow my entire journey here. 

An Ovulation Test & A Bottle Of Wine

(As you can tell by the title of this post, readers beware. This post does contain TMI so if you are weirded out easily, you may want to stop reading now. :) )

An ovulation test and a bottle of wine---

That's what I had in each of my hands when I was at Walgreens the other day. If you hadn't guessed it by my last blog post then now you know-- we are trying to have a baby. And because time is of the essence, trying to make it happen as soon as possible is the reason for the ovulation test. And paying $65 for said test is the reason for the wine. That and the fact that it's been a couple of months and it hasn't happened yet.

And I wish you could have seen the face of the guy at the register when I went to check out. 

Welcome to my world, buddy. 

Having more kids is something TJ and I have been talking about for some time. It's something that a lot of married couples think about. It's an exciting thing to think about. But for me and Teej, it's an exciting thought that also comes with risk. Risk we've thought about, researched, and decided to take.

If you were to ask a doctor, including my doctor, if they would recommend that I to have more kids, their answer would be no. That's because in order for me to have a child, I have to stop taking the medicine that keeps me alive. A medicine that if I did not take, my life expectancy would be 3-5 years.  This medication works by killing the 'bad blood cells' and it works great but the downfall is, it causes birth defects. Therefore, there is no way I could keep taking it while trying to conceive. So that means I have to stop taking it. The risk-- that my leukemia will progress.

My doctors recommendation is 'no'. But knowing that I really want kids (as do many younger women with CML), his next recommendation was to wait until my leukemia was basically 'more under control than what it is'. In simple terms-- the goal of treatment is for 0% of your blood cells to be leukemic. This means that the treatment is killing all of the 'bad cells'. I was once at 0% but have been over 0% but less than 1% for several months. Seems minor, but in the grand scheme of things, it means that something still isn't quite right. But the thing is, most people never reach 0%. I may never reach 0% again. And if I keep waiting until that day, that day may never come. So I decided I'm not waiting. 

That wasn't a decision that was made lightly. I've done research, lots and lots of research. I am part of a women's CML support group and even asked for their experiences, the ones who have had children. All of them have great stories. I'm not naive in knowing that there are some who haven't had that happy ending, those who aren't alive to share their story. Unfortunately that's a sad reality. But that's a chance I'm okay to take. And here's why--

I've been off my meds for two months. I recently had a blood test and my numbers haven't increased much. That's a good sign. If during this process they do begin to increase to a concerning level, once I'm far enough along, there is a form of treatment I can take that would be safe to the baby, it would just make me really sick. That's a fair trade off. Heck, I was sick almost my entire pregnancy with Talon, not like it would be anything new. Now I get tested every 3 months, once I'm pregnant I'll be tested more often to monitor the progression. But that's the good thing about this type of leukemia. It's chronic, which means it's 'slow growing' therefore, nothing crazy SHOULD happen over night. If something does happen, I feel like I will have time and options. At least that's what I'm hoping for.

Actually, I'm hoping for a non-eventful pregnancy. Some women with CML have had those. Their CML didn't progress at all. Now while I'd like that to happen, I'm not holding my breath. I'm preparing for it to progress a little, but hopeful not to a point where it's a concern.

Actually actually, I'm just hoping for a pregnancy. The longer I'm off my meds, the more at risk I put myself. When deciding to try, TJ and I decided that we'd only try for a certain amount of time. If it doesn't happen soon, then I'll go back on my medications then try again at a later date. In all honestly, I'm not real comfortable being off my medication for more than a year. That gives us 3 months to make that happen. That's a lot of pressure. And because of that, I've tried to just let it be. If it's supposed to happen it will, if not, then I can't be upset because God has already blessed me with the most amazing 8 year old. He is enough. Anything else will just be a bonus. 

Whether it happens or not, I plan on documenting the process. Not for the sake of me, but for the sake of any other woman living with CML who one day want children. I hope my story will be one of those happy stories.

I hope. :)

You can follow my entire CML journey from the beginning here. 

How To Deal

When you are living with a chronic disease, finding other people who are going through the same thing is so, so comforting. Knowing someone who can relate, it makes you feel not so crazy, or at least not alone crazy. :)

When I stumbled across this post, How To Deal With Chronic (Illness) When It Affects Your Family. Friends, and Social Life,  it hit home. After reading it, I cried. I'm not alone! Though what she deals with is chronic pain, after reading this I learned that it's still the same struggle as someone dealing with a chronic disease. In my case, cancer.

My life has completely changed since being diagnosed with CML, and so have relationships in my life, and not in a bad way. My relationships with my family and friends are still just as close, but what I can and can't do now has changed. If I had to pick two words to describe how I most always feel, it would be tired and nauseous. 

Actually, tired might not be a strong enough word. Maybe exhausted fits better. 

I still look like the same ol' Dana on the outside, but I'm completely different on the inside. I have *gasp* limits now. I can't stay up late, I can't have a jam packed day, I have to be careful of what I eat/drink because it might make me sick, I'm constantly tired, exhausted, I usually don't feel well, especially in the evenings (and I'm not even 30 years old!)--  all things you can't see (aside from when I'm throwing up of course <-- your welcome for that visual), and that's probably been one of the more difficult parts-- I love when I hear people say " I completely forgot your are sick." That means I do a good job of managing it and living a 'normal' life. But on the flip side, because of that, people assume what I'm going through isn't that bad because I do manage it well , I hide it well, and I don't look sick. And because people often forget I'm sick, then they often don't understand why I don't or can't do certain things, and it may come off as me being rude, not a team player, or a flaky friend. When really, I'm being quite because it's hard to be engaged in what's going on or in a conversation when I don't feel well,  and I'm not hanging out because I just have no more energy to give.

Every day is a battle. I never feel 100%. Some days are better than others, but a struggle non-the-less. Someday I can breeze through work. Others, I'm giving it everything I have just to make it to the end of the day, and sometimes I don't. Most days once I get home, I'll cook dinner and help Talon with homework (and sometimes those things don't even happen) then I check out for the day, I'm dunzo, my body can't handle anymore (which is also why I rarely blog anymore). I'm almost always in bed by 9pm. And that's not just because I'm exhausted from the day, it's also because that's when I generally feel the worst. I take my medication for my leukemia after dinner for two reasons-- 1. I have to take it on a full stomach or it will make me sick. 2. Even on a full stomach I'll still most likely get sick, and the evening (after work) is the most convenient time to be sick, if there is such a thing. Sometimes it passes on, most times I have to take Phenergan (which knocks me out), and other times nothing works so I try to sleep through it. There's been many days that I've gone straight to bed as soon as I got home. And to think, just a few years ago, I was working full time, in college, a homeowner, and a single mom. My day would begin at 6:30am, and end at midnight, or later. And I could handle it. I remember people always saying, " I wish I had your energy," or "how do you do it?" or  "enjoy it while you can because when you get older, that will change." I didn't realize that would be true just a couple of years later. Now I'm the one asking those people how THEY do it. I miss being able to do it all. . 

The person writing the article put it well--

"The ongoing uncertainty about how we’ll feel each day makes planning impossible. It’s hard to make plans because we can’t be sure how sick we’ll feel or how (fatigued) we’ll be in on any given day. Even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment.” <-- can I get an AMEN!

And it's not that I don't want to make plans, go out and do things,  it's just that I worry I'll end up not feeling well and don't want to take a chance on ruining someone else's time. So I normally just, don't. And when I do, it creates so much anxiety. I have to create a plan ahead of time of what I'll do if I get sick. Will it be a big deal if I have to leave? Will the people riding with me have another ride so they can stay and not be forced to leave with me? Do I have water? Phenergan? Sour patch kids? Is there a bathroom nearby in case I need to throw up? Is there a place for me to lay down if needed? Pure anxiety.

This anxiety over realistic fears have prevented me from going on trips and doing fun things that I used to be able to do. 

I remember my first experience dealing with this--

It was not quite yet a year since being diagnosed. At the time, I had a friend who was friends with Aaron Lewis (once alternative, now country singer). I had a once in a lifetime opportunity to fly on a private jet with Aaron Lewis, Craig Morgan, and Thomas Rhett (more country singers) to a benefit concert in Massachusetts and while we were there, we were also going to tour a gun factory.  This was a one day deal-- leaving that morning, would return very late the evening. I knew I would be pushing my limits but it would be worth it. That was until I got sick the night before. I was dehydrated and had a horrible headache the next morning. Even though the nausea was gone, I still wasn't feeling quite well. What if I get sick again? What if I need to lay down? There will be no place because we will either be on a plane, in a car, in a factory, or near a stage with hundreds of screaming fans. And how embarrassing would it be if I did get sick and they had to cancel the tour or any of the other plans because of me. 

So I had no choice but to cancel. 

Just this past Thursday, I went with my husband and some friends to the KFC Yum! Center in Louisville to watch the Cats play. Actually, we went for the day to watch all 4 tournament games, something that my husband was totally pumped about. In theory it sounded really fun. The day before, I started to second guess myself for signing up for such a big venture. Out for 12 hours? Can my body handle it? I really don't feel confident that it can. What if I need a quick caffeine fix to help give me energy, I'll be out of luck because all I can drink is water and some teas. And the Yum! Center won't have tea. I mean, it's the Yum! Center. And if they do have tea it will probably be too sugary and I won't be able to drink it anyways. What if I accidentally eat something that makes me sick? I better bring a blanket and pillow in case I need to camp out in the car because I could never ask my husband to leave early when he's been so looking forward to this.

Last weekend, Talon had a baseball tournament in Bowling Green and since his games were so early Sunday morning, my mom and I decided to just stay the night. We had some free time Saturday evening so we went to the mall and not even 30 minutes into the trip, I had to spend the rest of our time in the bathroom figuring out if I was going to throw up or not, because I felt that nauseous. Of course my mom suggested that we leave and go back to the hotel so I could lay down but I refused. I didn't want to ruin their time because of me. 

It's frustrating, it really is. But lucky for me, I do have such a great support system-- family, friends, and co-workers, and they get it. When I demand to drive because I'm now super susceptible to car sickness, they let me. If I need to leave work or a gathering early because I don't feel well, they don't make me feel guilty. When I'm laying on the bathroom floor waiting to either throw up or for the nausea to pass, my husband always offers to get me anything I need. When my son knows mom's not feeling well, he suddenly becomes a whole lot more independent without me even asking. 

They give me passes, Cancer Passes, just like my sister made me. :)  And because of that, I am so completely grateful.

Living With A Chronic Disease

Two years now I've been living with this thing they call leukemia, Chronic Myelogenous Leukemia to be exact. Also known as CML.

I remember the day I was diagnosed so vividly, the whole experience leading up to my diagnosis really. Every moment, every thought, every fear, and hearing those words uttered by my oncologist-- 'you have leukemia'. I didn't know what to expect aside from what my doctor had told me and what I had learned from the little research I did. So to say these last couple of years have been a learning experience, well that's an understatement to say the least.

Year one was rough, and not because of the CML itself, but because of the Gleevec. Gleevec is a targeted type of 'chemo' that only kills the 'bad' cells. Since there is no cure for CML, it's something I'll have to take everyday for the rest of my life. There are three stages of CML. The goal of the treatment is to keep you in the first stage, which is where I was and still am and will hopefully always will be. CML doesn't make you sick until you reach the second and most definitely the third stage. So the 'roughness' I had to deal with was adjusting to my medication.  A lot of medications come with side effects, that's a given. If I take a phenergan, it makes me soooo sleepy. If I take certain types of prescription pain pills, it makes me itch. Imagine taking something that kills your blood cells. Yeeeah.  Year one was filled with nausea, extreme fatigue, rashes, anxiety, headaches, edema, bone pain, and dehydration, just to name a few. I couldn't make it through a full work day so I began  working from home. I had to cancel some trips from being too sick. My social life became pretty much non-existent because I was way too exhausted. I was leery to try most foods because I didn't know how it would react to my medication and I didn't want to chance hugging the toilet more than I had to. More days than not I didn't feel good. I can't tell you how many days and nights I just cried out of frustration. And then there was the bone marrow biopsy and aspiration. Seriously the most pain I've ever experienced, ever. If you know of anyone who has to get one of these, buy them an ice cream cone or something. Trust me, they'll deserve it.

Then there was year two. And it was soooo much better, and more consistent. Most days I'm still dealing with the extreme fatigue, dehydration, headaches, and nausea. I know that still sounds miserable (and it can be) BUT here's the kicker-- I've finally began to learn how to cope and manage it. One of the first things my doctor advised me to do was to 'listen to my body'. Yeah okay, like my body is going to talk to me. Turns out, there was a reason why he's the doctor and I'm not. He was totally right. When I'm tired, I lay down. Most nights I'm in bed by 9pm. Not because I want to be, but because I know if I don't, then I won't feel good the next day. I've learned not to overdo it because if I do, I'll pay for it the next day. I now only drink one caffeinated beverage a day. If I try to slip in another, I get the biggest headache and feel 10x more dehydrated than I had already felt. I drink more water, I've learned what to eat and what not to eat. I've learned that I can't do and be the way I was before leukemia, that I have no choice but to adjust and make a lifestyle change, whether I want to or not, because if I don't, I'm going to be a lot more sick and miserable than I have to be. I always have water and sour candy with me at all times (the candy helps with nausea, so does pickles, weird I know) I try to always drive when possible because otherwise, I'll most likely get car sick. I've learned when to take each of my 10-14 medications each day, and what it take it with. I've learned not to take a certain medication after eating greasy food.  There are only a few days where I feel 100% good but most other days, I'm about at 80%, which is a lot better than the first year. But low and behold, there are still some days that no matter what I do, nothing helps, and I have no choice but to lie at the mercy of the side effects and just try to sleep through it. And those days are still emotionally tolling. If you read my post a couple of months ago called "Cancer Pass", then you know what I'm talking about (click here to read).

It's on those days that I remind myself of a quote from a fellow CML patient:

"The truth is, there is nothing easy about chronic diseases. At the best of times, they are a nuisance that we keep in mind, but at worst, they take hold of our personal and professional lives. My own career choices have at times been altered because of it. One of my biggest regrets will always be not being able to follow through on a dream because of it. So I adjust the sails, and try to compensate, and everything works out in some way, whether for the best or not. And we hold on until it retreats into the background once more. We hold on, and we hope for the better day. Because on those days, we are infinite." 

So true, so so true.

I think what has really changed from year one to year two is acceptance. Initially, I was determined to live my life as I did before being diagnosed with leukemia.  But I finally realized that whether I liked it or not, if I didn't want to be miserable, I would have to adjust my life. And I did. And you know what, it hasn't been so bad. The best part-- I still get to pursue a career that I love, I still get to do most of the things that I love, I still get to spend time with my sweet baby boy and family, I still get to marry the man of my dreams, and a second chance at life which I've recently been reminded is a true blessing- all of which wouldn't be possible if it weren't for the medication that causes all of these pesky side effects.

I think I can handle that trade off. 

(Picture of my cutie supporting the orange for his momma)

The next obstacle for me will be having more kids. I'm hopeful it will happen but only time will tell....

To follow my entire journey from beginning to now, click.here.

Confession: 

One of the best things I could have done this past year was to join a CML support group. It's been wonderful talking to other people around my age who are also living with CML.  It makes me feel not so crazy when I hear that they are dealing with similar issues as I am. I've also connected with some newly diagnosed CML patients to let them know what to expect, how to deal, and offer encouragement, support, and hope. It's been very therapeutic.

Cancer Pass

The world doesn't revolve around me having leukemia. That's something I was reminded of today.

Me having leukemia doesn't interfere with my life. Me having to deal with side effects from the medication I have to take because I have leukemia interferes with my life. And most days, I'm dealing with it. Some days its a lingering headache. Other days it's a constant thirst because of dehydration. Other times it's eating food and having a mild reaction because my medication doesn't like it for whatever reason. Most days it's extreme exhaustion.  A lot of evenings it's nausea that at times leads me to hugging the porcelain throne. But I've learned how to deal with it. I've learned how to manage it. I've learned how to make it through my day. But there are some days when I experience all of those side effects at once, and  it's those days that I wish I had a cancer pass. You know, like a hall pass, but instead of being excused from the classroom for the moment, I could be excused from the day. 

This morning was one of those days.  I woke up around 6am with a horrible headache and so completely nauseous, the kind of nausea where if I make one slight move, I'll be visiting my friend Ralph, if ya know what I mean.  And the only thing I can do is just lay there ever so still and just try to sleep through it. 

That's what I tried to do this morning. Sleep through it and wait for the worst to pass. Seems simple, no? Ah but it's not. While I try sleeping, Talon is late for school. While I try sleeping,  no one at work can cover a meeting for me. My phone keeps ringing, my inbox keeps filling up with emails that need responses. Because I have people depending on me, regardless of how I feel. So I rush to take a shower, and inevitably end up hugging the porcelain throne. I compose myself as best I can, get myself and Talon ready and hurry him along to school, all while trying to hold back tears of frustration. I hate the days when I feel horrible, and I hate when it interferes with my day, with my life, with my obligations. But in my frustration, I selfishly think to myself, "doesn't the mere fact that I have leukemia allow me to have a few free passes?" Just a few. A few days throughout the year where when I feel this miserable, I can skip the day. I don't have to worry about work, or being a taxi, or doing my domestic responsibilities. Where I don't have to worry about anything except laying in bed until I feel good , good enough to function again.  Most days I can push through, but there is an occasional day where I just can't, or matter of factly, don't want to. I just want to sleep through it and dream about the days I didn't have to take 9-10 pills a day in order to function, in order to live. 

Not only are these days physically tough, but they are also emotionally tough. I blubbered like a big baby most of the morning just out of frustration. I held it together when I walked into Talon's school to sign him in and drop off a note as to why he was late.  When I was leaving to go back to my car, I noticed a boy sitting outside the lunchroom, crying. (I assume he was in trouble). And I really wanted to walk up to him and give him a big hug and say " I'm having a bad day too." 

And when I make it to my work meeting and begin talking about the great work we do at United Way, my mind eases away from the emotional drainage that had taken place earlier in the day. And once I down my Gatorade, I start to feel a little better physically. And by the end of the work day, I'm feeling better, just exhausted, mentally and physically. 

But as I drive back home, I feel defeated for letting my illness get the best of me and guilty for being such a big baby about it.  Over the last almost two years, I've done a great job learning how to cope with and manage my sickness. I've used 2.5 sick days since I started this job (6 months ago) and 1.5 of those days were due to a stomach bug, no relation to my leukemia. Luckily, when I feel the worst is generally in the evenings or on the weekends, so it doesn't interfere with my day as much. But it's in those moments where I feel like my illness is controlling me and my life that are the hardest. And it's in those moments that I feel defeated. 

But then I remember, those moments are few and far between. Thank the Lord. It could be worse, things could always be worse. And then I came upon an article, written by someone else living with CML, and it reminded me that I'm not defeated, I'm not a baby, and I'm not alone:

"The truth is, there is nothing easy about chronic diseases. At the best of times, they are a nuisance that we keep in mind, but at worst, they take hold of our personal and professional lives. My own career choices have at times been altered because of it. One of my biggest regrets will always be not being able to follow through on a dream because of it. So I adjust the sails, and try to compensate, and everything works out in some way, whether for the best or not. And we hold on until it retreats into the background once more. We hold on, and we hope for the better day. Because on those days, we are infinite." 

And I know tomorrow will be a better day.