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. 

A Royal Sickness

Turns out Princess Kate and I have something in common.......

Hypermesis Graviduram. That’s probably like a foreign language to most but for 2% of pregnant women, those are some cuss words.

Imagine your worst hangover ever….

Now imagine feeling like that all day, every day….

Welcome to life with Hypermesis (minus the alcohol, and minus the fun time and bad decisions the night before).

Hypermesis Graviduram (or also known as HG) is severe nausea, vomiting, and dehydration in pregnant women. This ISN’T your typical morning sickness. This is when your body acts like it’s growing a half human/half vampire in your belly and it sucks the life out of you (that’s a Twlight reference for those who didn’t catch that.)

I suffered from HG when I was pregnant with Talon. It was so bad, I had to quit my job. I couldn’t eat or drink anything without immediately throwing it back up. I started out at 110 pounds, went down to 97 pounds in the first trimester and slept through the first half of my pregnancy thanks to the Phenergan. It was miserable. There was one silver lining however—I only ended up weighing about 125pds at 9 months and had an almost 9 pound baby so within just a couple of DAYS after giving birth, I was smaller than I was before I got pregnant. I remember in the last trimester, I finally got my first pregnancy craving—cheese pizza from Papa John’s. How boring is that? It was a long 9 months but oh so worth it. My sweet baby boy forever changed my life and I would do it all over again. Well, I am doing it all over again. :)

Flash forward 8 years later. I find myself in the hospital from dehydration and completely miserable due to HG and the nurse asks me—so you had HG with your first pregnancy and you decided to do it again? Yeah, I was asking myself the same thing. It’s funny how you can forget how bad something is when so much time has passed. I was hoping it would be different this time. Wishful thinking.

My pregnancy didn’t start out rough, at first. I felt great up until 6 weeks. Ate whatever I wanted, did whatever I wanted, I was loving life. Then it was like my body realized what was going on and went into shock. I couldn’t eat or drink a thing. Nothing sounded appetizing. I was nauseous from the pregnancy, then nauseous from being hungry but not able to eat. I started out at 114 pounds and went down to 105 in less than two weeks. I was miserable. I could barely walk to the bathroom and couldn’t even carry on a conversation. All I could do was lay there and hope my anti-nausea meds would knock me out. I was admitted to the hospital for dehydration (or to be more technical, I had ketones in my urine which isn’t good during pregnancy). They pumped me full of fluids and full of anti-nausea meds but I still felt miserable, still couldn’t carry on a conversation or focus on anything except how miserable I was feeling. They let me go home and my doctor prescribed me something called Diclegis to take in conjunction with my anti-nausea meds. After taking my first dose of Diclegis, I instantly starting feeling some relief and was even able to eat part of a sandwich. It was so exciting, but short lived. 

The next several days I still felt miserable and found myself back in the hospital getting more fluids. At this point, I had taken 6 straight days off from work and began wondering how I was going to make it through this pregnancy. My house was a wreck, I hadn’t done laundry in forever, my 8 year old was eating Doritos and Pediasures for dinner because I didn’t even have the strength or stomach to go to the kitchen and make him something to eat, and I had to depend on TJ to do everything—drop Talon off at school, pick him up, take him to practice, pick me up some ice or some food that I would try to eat, bring me something from the kitchen, go to the grocery for me, pick up my prescriptions, do laundry, do everything because I couldn’t. Talk about a test in your first year of marriage.

But then I started to feel SOME relief. I figured out what medication to take and when and with what. I am able to stomach a couple of bites of certain foods and handle a few sips of water. Now this might now seem like much but it’s better than nothing which what I was eating/drinking before. And I’ve made it back to work, most days. I still haven’t made it through a whole work day and I still feel completely miserable and still haven’t gained any weight, but I’m throwing up less (it’s mostly gagging and dry-heaves, TMI I know) and throughout the day, I’m able to eat a total of almost one meal and consume about one bottle of water. I’m still at 105 pounds but have maintained it. I still have a hard time focusing on anything but the misery I feel but it’s better than before. I am still very weak and can’t do much more than walk from one room to another, but it’s better. I still have to sit down while getting ready in the morning and it still takes forever to do so because I have to stop and take breaks so I don’t pass out or throw up but I’m able to do so most days. So if we are being honest here, I still feel pretty miserable but it’s better than before. I’m able to somewhat function again. My house is still a wreck, my laundry is still piled high, I still have to depend on TJ to take care of Talon most days, I still can’t socialize with friends or family, but I’m able to work some and do more than just sleep. And I’m hopeful it will continue to get better as my pregnancy progresses.

First my days consisted of trying to sleep all day, every day. Now my days consist of making it to work part of the day, making sure I’m taking my medications at the exact time, then coming home and sitting/laying on the couch then eventually finding the strength to walk to the bedroom and go to bed. and always stressing about what I’m going to try to eat because I know as soon as I get hungry, if I don’t find something to nibble on, I’ll be down for the rest of the day. Talon, TJ, my family, and my friends have been completely neglected by me. Lucky for me, they are all very understanding and very supportive. And I’m even more fortunate that my boss has been so flexible and accommodating to me at work. It’s definitely helped to relieve some stress.

So in a nutshell, having hyperemesis is when…..

• ·         You can only stomach sips of water but crave flavor SOOOO bad that you will take a drink of apple juice or orange juice but immediately regret it after, yet you will do it again the next day.
• ·         You have to have your husband drive you to the grocery store OR go for you because you don’t have the strength to go yourself and need that support in case you find yourself throwing up in isle 4.
• ·         While you love brushing your teeth to get rid of that nasty taste in your mouth, you also dread it because it also aggravates your super sensitive gag reflexes and, well you get the picture.
• ·         You wake up with some Trix (as in the cereal) stuck behind your ear because most of your eating happens in bed.
• ·         Before you eat something, you ask yourself “am I okay with throwing this back up later?” because that's most likely what will happen.
• ·         When you can’t wear anything remotely tight or fitting or it makes the nausea even worse so your limited to wearing the couple pair of stretchy pants that you have, unbuttoned and sometimes unzipped and a long shirt to cover. You would wear a dress but that would require you to shave your legs and well, that ain’t happening.
• ·         When even though you are losing weight by the day, your boobs keep growing by the minute and your bras no longer fit so you are forced to wear a tank top with a built in bra until you muster up enough strength to go to Target and find something that fits, and isn’t tight, and has no wires, and really does nothing for support. Options are limited, let me tell ya.
• ·         When you get home from work, you strip down to a tank top and underwear and that’s all you wear until you have to go out in public again (forewarning to anyone who just wants to ‘stop by’)
• ·         When you are tired alllllll of the time. Pregnancy itself causes tiredness, then not being able to consume any caffeine (not because you don’t want to, but because you can’t stomach it) is even worse, then add on the drowsiness caused by the anti-nausea meds you are taking around the clock—I call that Triple Tired.
• ·         You waste soooo much money of food because you are willing to try anything that you can keep down but really can’t eat any of it.
• ·         You now hate the thought of the foods you once loved. Me, the person who could eat all day, everyday. Now thinking about food is just misery.
• ·         When you see a commercial on TV about food, you have to close your eyes or change it real quick or when someone shares a recipe on FB you have to scroll past it real quick because just the thought of warm food can make you throw up… just the THOUGHT.
• ·         You manage to force some food and water down your throat then make one false move (turn to fast, get up to fast, eat something with flavor) then you throw it all back up and in your best Baby from Dirty Dance voice, you throw your arms up in the sky and say “ I did it for nothing!!”
• ·         You constantly have a lump in your throat and know at any given time, you could throw up. 
• ·         When you always have a trash bag, napkins, and bottled water in your car at all times.
•           You realize how great of a support system you have because your family is stepping up to do anything for you (my Aunt went grocery shopping for me, my Mom cleaned my house, my husband never says no to anything I ask)

So why am I telling you this? I assure you it’s not for pity. I knew what could be when signed myself up for this. I say this so if you see me out, at work, in town, at the ballpark and I have this horrible look of disgust on my face (I try to keep a smile but if not), it’s because I have the worst taste in my mouth and feel like at any moment in time, I could throw up. If I’m standoffish, not talkative, nor overly friendly, it’s nothing personal, it’s just because I’m so miserable that it’s hard for me to carry on a conversation. Hopefully the worst will only last a couple more weeks then I’ll get to enjoy regular morning sickness the rest of the time. :)

While with my pregnancy comes misery, the prize at the end will be so completely worth it! Come on March 2016!

So for anyone else who suffers from HG, here are some things that I have found that work---

• Take Zofran morning, lunch, evening (after you’ve had a couple of bites of something)
• Take Diclegis morning, after lunch, and before bed
• Take Phenergan at night before bed
• If you can only drink water and even that’s too hard, mix in a splash of 7UP or Apple Juice
• Food that works for me--- cold foods only (bagels, chicken salad, turkey sandwiches, pears and peaches, black bean and rice burrito)
•  Eat very small bites and very slowly
• Don’t drink through a straw
• Don't drink water on an empty stomach
• Try to eat as bland as possible

Confession:

So I’m sure many people frown at the thought of taking medications while being pregnant. However, I’m a firm believer that you have to weigh the pros and cons. I took Pheneragan during my pregnancy with Talon and he turned out a-okay. Everything I’m taking is deemed safe to take while pregnant. The alternative is to not take them, and I’m honestly not sure I nor the baby would be able to survive without them. I have to have my body as healthy and as strong as possible, not just for the baby, but also because I need my body to also naturally fight off this cancer since I’m not able to take treatment for it. 

Garrett, Party of Four

Ahhhh, a baby. And a puppy. And the other two dogs we have along with the 8 year old. Life for the Garrett’s is about to be crazy, and I’m so excited!

(our newest addition to the family-- Murray)

So if you keep up with my blog, then you already knew that TJ and I were trying to grow our family and that we had a limited time frame to do so (read more here). First of all, with the type of leukemia I have and will always have, my treatment comes in pill form that I have to take every single day to keep it under control. The only problem is, it’s not recommended to take it while pregnant because it can cause birth defects. The recommendation from my oncologist was to keep taking it until I had a positive pregnancy test (actually his recommendation was to not have any more kids but he knew that wasn’t going to happen). However, I didn’t feel comfortable having it in my system at all so after doing some research of my own, I decided to stop taking it before we started trying. The longer I’m off it, the more at risk I am for my cancer to progress to a serious level so we gave ourselves three months to make this happen. If it didn’t, we would try again next year. 

Secondly, the most demanding time for me at work is between October-February. That’s the time of our campaign which means I’m in lots of meetings asking people for money to support our cause. I’m a fundraiser, it’s what I do. So I had to time it where I wouldn’t either be a. dealing with morning sickness during that time and b. wouldn’t be on maternity leave during that time. So that left us the summer. Since we had some many factors against us and such a small time frame, though I wanted it to happen more than anything, I tried not to be overly optimistic about it.

So two months off my meds had passed and I went to my quarterly checkup with my oncologist. Testing showed that my leukemia had progressed by 1.5%. Now that might not seem like much, but it’s higher than it’s ever been since being diagnosed with leukemia. It was heartbreaking to hear. While I expected it to gradually increase, I was hoping it would take longer than a couple of months to begin. So the next question was—how much longer do we keep trying? Our window was closing and it just seemed like it wasn’t meant to be so we decided to hold off. It was becoming stressful on our relationship.  I decided to wait a few more days before I started to take my medicines again so I could enjoy a side-effect free life for just a little bit longer. 

The day had arrived for me to begin my 8+ pill daily regiment but something inside of me told me to take a pregnancy test, just in case. I had no reason too—I wasn’t late nor felt any different.  When the results came back, I was in complete shock at what I saw-- It was positive!  My first thought was an exciting—‘Oh my gosh I’m pregnant!’ The next thought was a scared—‘Oh my gosh I’m PREGNANT.’ Even though this was planned, the initial thought scared me to pieces. Am I ready to give up my nights full of sleep and free time? Our world is about to completely change. Are we ready? What if my leukemia progresses? Then a sense of calmness came over me. All odds were against us, the time frame for trying was unrealistic, but it happened, and I think God had a big hand in that. I've never been in control of it anyways, but He has been so what is there to worry about? 

Garrett Party of Four (and 3 dogs)-- Coming March 2016!

CONFESSION:

While I’d like to say this has been a fun, exciting, uneventful pregnancy thus far, it’s been everything but. Not only am I growing a child in my belly while my body is also fighting leukemia, I’ve also been blessed with what us lucky 2% of women deal with during pregnancy—hyperemesis gravidarum (hg). More to come on that.