Well, it’s almost 3 am and here I am, wide awake. I can’t sleep. I’ve been wanting to get a post written but I’ve just been
so busy too lazy. When I write, I have to really focus and think about everything…and right now, my thinker isn’t working too well. It’s tired.
So, I figure if I can’t sleep, let’s try to write. My friend Lindsey asked me today if I had been watching a Big Little Lies–I had mentioned to her that I couldn’t wait to start it…like a week and a half ago. And there couldn’t be a more perfect time for me to binge watch a show…so why haven’t I started? I can’t answer that. When I told her I hadn’t watched any shows since I’ve been in the hospital, she seemed really surprised and asked what I had been doing. Y’all, it’s the weirdest thing. I don’t even know. But somehow, the days are passing…and they are passing pretty quickly. I’m starting day 17 and I can’t quite believe it. It has flown by (praise the Lord). I’ve been reading. I just finished The Woman in Cabin 10. I was not impressed at the beginning…but it was SO good, I’m glad I followed through and finished it. I can assure you I haven’t been reading 24 hours a day for 17 days, so I’m not sure what I’ve been doing. I haven’t really been napping, shockingly. I’ve colored a little. Walked laps in the hall with my pole in tow. But seriously, that’s it. It sounds like I should be bored out of my mind. But I’m not. I don’t understand…but I’ll take it.
Now I feel like I need to be more purposeful with my time. Which means I need to start binge watching Big Little Lies. Yep, that’s purposeful. Next week I’m starting a data entry job that I’m able to do from the hospital and from home. It seems pretty mindless…looking at stat reports and then entering particular information into a spreadsheet. Sounds rather boring, but hey…it’s decent money and I can do it on my own time…so sign me up. I’ll take what I can get at this point. It will be something to keep my mind busy but will also bring in
boo coos a teeny bit of money. (Keep in mind I haven’t been paid since I went out in November. Awesome.)
Things have been going well here. Well, I suppose that could be subjective. It depends on your perspective. I have felt like crud since Saturday morning…but nothing compared to what I could be feeling. Throughout all 6 rounds of chemo, nausea has never been one of the side effects that I’ve had to deal with…and for that, I’ve been SO thankful. Being nauseous just blows. I’d rather just throw up and move on. It’s like a tease.
Well this round, there was a whole bunch of teasing. I have been so incredibly nauseous and have had awful stomach discomfort. They’ve continuously given me medicine for it and nothing really seemed to help. Eventually the nausea wore off and my stomach just felt awful. It was so dang distended. I look like I’m pregnant…and feel like I just delivered a baby…I call it my Chemo baby. My stomach was SO full and so hard. But the thing is, I have felt so sick, I hadn’t eaten anything. I ate breakfast Saturday morning and didn’t really eat anything again until Wednesday morning. Don’t worry…”it’s normal”, they said. I hadn’t eaten, but I look like I had eaten a small animal. It was the strangest thing. And I had gained 5 pounds in 3 days…riddle me that, Batman. I mean if I’m going to gain weight, at least let it be because I’m eating junk I like…
I’m a snacker. I love me some snacks. I had all of my favorite things up here, right at my fingertips. I had Cookies ‘N Cream ice cream, Strawberry frozen yogurt with sprinkles, a Drumstick*, a Schlotzskys sandwhich and chips, Cinnamon Chip cookies, Raisinets, Starburst, Hot Tamales, Skittles, Oreos, Chips Ahoy. Y’all, it was like heaven. Normally, my inner fat kid would have been goin’ to town eating crap all day long. I.ate.nothing. Nothing sounded good and I just wasn’t hungry. I suppose I should be grateful I wasn’t hungry because with all that sugar, I probably would have become diabetic and gained 20 pounds.
I’ve had pretty gnarly headaches daily, but fortunately, they respond to Fioricet. So they stink while they’re there, but they don’t last forever. I can handle that. My stomach was just constantly miserable. Tonight, I finally feel like I may be getting some relief. Dr. Matthews came in yesterday and was pressing on my stomach and doing different things and he didn’t like my reaction. It was obvious that when he pressed on it, it was uncomfortable. So he ordered some medicine hoping it would bring some relief…and praise the Lord, I think it has! I ate one and half chicken tenders, so that’s exciting. My tummy didn’t feel fantastic afterwards, but the discomfort seemed to be less than it had been. I consider that a win.
Mouth sores. Oh, mouth sores. Those were what I dreaded the most coming into this whole thing. The doctors and nurses made them sound awful. Dr. Matthews mentioned that I would have a pain pump specifically to lessen the misery of mouth sores. I got mouth sores several rounds ago when I got Thrush, got really sick, and ended up in the hospital. They.were.horrible. So I was expecting that again. It didn’t really seem like it was if I was going to get the, but when I was going to get them. Starting the day I was admitted, they gave me mouthwash called Biotene to help prevent them. I’ve used that sucker constantly. Like water.
And y’all, you know what? I don’t have a single mouth sore. (Yes, I’ve already knocked on wood.) I absolutely could still get them, but the fact that I’m 8 days post transplant and I haven’t gotten even the tiniest one is truly a miracle. God’s lookin’ out for me. Thanks, Big Guy. It sounds like the lady next door to me is absolutely miserable and hasn’t eaten in days due to mouth sores. My heart breaks for her. I pray she’ll find some relief soon. Mouth sores, you are not welcome here. #byebye
*I mentioned that I had a Drumstick in the freezer. I ordered this little taste of heaven from the hospital cafeteria. I was SO excited about it. Danny put a label on it with my room number–you’re supposed to label everything you put in the fridge so that no one takes it…but guess what? Brace yourselves. Are you ready for this? SOMEONE STOLE MY DRUMSTICK. At one point I thought that maybe a Drumstick sounded good…so I asked Danny to go get it…someone had straight up taken it. Someone stole the cancer girl’s Drumstick. I’m telling you…Karma, she’s not a nice lady. She’s coming for you, Drumstick thief. [In all seriousness, I’ve been joking about being really upset about it being stolen…but when I thought about it, I realized this–there are two groups of people it could have been. It was either someone who is also receiving a transplant (everyone on this floor is receiving/has received/will receive a transplant during their stay), or it was someone visiting the patients. If it was a patient, I hope that Drumstick was just what you needed to make you smile. If it was a visitor…you stole ice cream from a cancer patient…I hope you’re beaming with pride. You’re not a good person. RIP Drumstick.]
Now that I’m off my soapbox, let me break your heart a little. Y’all. There is a 16 month old down the hall from me. He received his transplant several weeks ago. 16 months old. That’s [almost] like Hudson being here. One of his nurses was holding him and walking laps in the hallway, pulling his pole too. He was in a little hospital gown and was laying his head on her shoulder. He had little tiny patches of hair on his head…most if it was gone. A tiny little bitty human…going through hell. I just don’t get it. I don’t understand how that happens. Kids aren’t supposed to experience things like this. Heck, parents aren’t supposed to experience this with their kids.
I just can’t imagine his sweet parents. Mom practically lives up here with him. I talk about my discomfort and problems and stuff…and then, I think of him. And I feel like a jerk. And my heart breaks. He knows no different. He doesn’t know what it’s like to feel good. He doesn’t know what it’s like to be a little baby and explore. The thought of having Hudson locked up in a tiny room, hooked up to wires 24/7, and receiving chemo, just boggles my mind. I can’t begin to imagine what that’s like. And I pray I’ll never have to find out. If you would, say a prayer for he and his family. God has big plans for him.
Speaking of a prayer requests, I have another one. Try to follow me. Our next door neighbors who are our dear friends, have close family friends that they grew up with. (The dads grew up together, I believe.) Their 7th grade daughter was just diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. DIPG is an inoperable cancer located in the brain stem. They are going to do 6 weeks of radiation, but don’t know much past that. There aren’t a whole lot of options because of the location. Absolutely heartbreaking. Please pray for them. Pray for peace…for answers…and for guidance. How do you explain that to a 11/12 year old? They shouldn’t have to. They have started a GoFundMe to help with medical expenses. If you feel led to donate, here’s the link. After my diagnosis, we received numerous donations from strangers and we were so grateful for each and every one of them. It meant so much to know that someone who didn’t even know us, was willing to support us in some way.
I just finished the whole blog post and then realized I never talked about the actual day of the transplant…my new birthday. So let’s back up.
The day of the transplant was actually pretty anticlimactic. They started me on several different pre-meds to help prevent any reaction that could potentially happen. After the pre-meds were done, the prepped me for the actual transplant. It sounds like it would be a big process, but really, it was just like a blood transfusion. They hooked up the line to my tri-fusion and the cells started slowly making their way back into my body. A lot of people have asked if I could feel anything…and the answer is no. And I felt absolutely no different.
Apparently a stem cell transplant has a specific smell. Yes…a specific smell. They warned us ahead of time that I would probably smell like either garlic or creamed corn. Yah, I don’t get it either. How do stem cells being put back into a body produce a smell like that? So of course everyone here kept sniffing to see if this whole thing was real. My mom “smelled” it first. She smelled creamed corn, not garlic. She kept saying she smelled it…but she was the only one. Then eventually Danny smelled it too. So maybe there is something to that…
For the record, I took a LONG shower afterward. I don’t particularly like smelling like corn…or any vegetable for that matter. I prefer Amber Oil. (Shout out to Mar Mar.)
It took a little less than an hour for the transplant. Once it was done, it seemed like it should have been a big huge deal…but it really wasn’t. It was like, alright, well, that’s done…now what? Eventually the nurses all came in and sang happy birthday and gave me a cute little cake. They made the day pretty special. [Even though they didn’t get to be there, Harper and Hud wore party hats to celebrate mommy’s new birthday.]
Since the transplant, I’ve had to have several blood transfusions and have had to receive a unit of platelets. But don’t you worry, it’s all normal. Chemo bears so many gifts! Over the weekend I had my “First Fever”. That’s really a thing. After your transplant, you will have a fever. It essentially happens when all of your counts are at 0 and you have absolutely no immune system…and the new stew cells are trying to regenerate and mature. Mix all that together and you get a fever. It didn’t stay long, and I was grateful. My white count was 0.0, so my body literally couldn’t fight an infection, even slightly. When everything hits rock bottom, they say that you “nadired”. I mean it sounds kind of cool…yep, I nadired. Don’t be jealous.
So now the next step is getting the counts to go up…and then the challenging part, to stay up. It sounds like it’s normal for them to go up, drop back down, and then finally go back up again. Once they are consistently up, then we get to look at being released to go home. So y’all, when you’re talking to the Big Guy upstairs, maybe ask Him for some consistently high blood counts for this girl. I would reaaaally love to bust outta this joint and get home and see/hug/squeeze my babies. I miss them so much it hurts.
Harper seems to be doing well with everything. She has gotten upset and cried for me only once, which makes me happy. I don’t know if I could take it if she did that a lot. We FaceTime every day. She always asks when I’m coming home. Since we don’t know, we just say hopefully soon. Amy (Danny’s mom) made her a calendar where she can cross off each day as it passes and can see all of the fun things they have planned throughout each week. We chose a day toward the end of May to mark on the calendar and say that’s “hopefully” when mommy will be home. We [hopefully] over shot it by quite a bit. I’m hoping that things will continue to go well and we will get to tell her very soon, that mommy is coming home the next day. I’ve been feeling really crummy, but in the grand scheme of things…I’m golden. I have been so fortunate. I could be feeling so much worse and struggling to get out of bed. But I’m not. I’m so blessed.
I haven’t had visitors…and to be honest, it has probably been good for me. It has allowed me to rest while I’ve felt flat out crummy, focus on feeling better, and most importantly, not risking getting sick. I absolutely cannot wait to be out and see everyone, but I think that it has probably been for the best to have very little company. I feel a little guilty saying that. But, it’s the truth.
[Insert clever segway here.] Y’all, I was watching Ellen the other day and you know what I learned about her? That woman is almost 60. 6-0. Sixty. I was absolutely baffled (clearly, I still am). I almost fell out of the bed when she said that–which would have been a disaster because my platelets are completely gone, so if I started bleeding from the fall, it wouldn’t stop, and could potentially be really scary. So, I’m glad I didn’t fall out of bed. But for real, I was shocked. She looks incredible. She looks 40. I still don’t think I believe it.
Oh, Ellen. My hopes of getting to be on her show with Kiptin are essentially gone…and that makes me sad. I was so hopeful she would pick up his story and eat it up. It’s seriously like the perfect story for her show. Alas, here we are. Y’all, the other day on her show she said, “I need a good chocolate chip cookie.” Umm, hello?! That’s like God screaming down saying, “CALL KIPTIN AND ASHLEY”. She’s not listening. C’mon Ellen.
Either way, going to her show is on my bucket list. Going to one of her “12 Days of Giveaways” shows is on my dream list. I’d be okay with either. I’m going to meet that lady one day. I’m not sure when or how, but by golly, we’re going to meet and she is going to love me. Then we’ll be friends. (I’m totally kidding about her loving me, I’m not actually that cocky. But I am pretty fun.)
Then, get this. Harper hates snakes. (Duh.) She always says, “Me and mommy don’t like snakes, they are g-ross! Ew, we hate snakes!” At the zoo, she didn’t want to see them, and when she did, she would run away from the window.
We finally got word that the car is totaled. Looking at it, you really wouldn’t have expected that, but the frame was pretty messed up where we hit him, the radiator was busted, etc. Fortunately, we lease my car. And in Texas, when you lease a car, you are required to have GAP insurance (Texas, you’re slowly redeeming yourself). So, insurance will pay what we owed on the car, and we start fresh. We will still have the deductible and a down payment on a new car…but had we not been leasing, we would owe the entire balance of the car. That could have been ugly. Small victories.
Here’s a little irony for ya. At the hospital, each patient’s room is labeled with the first three letters of their last name, then the first three letters of their first name. My neighbors says CHA,CHA. I’m so curious what his name is. Another one is JAR,THE. I’m sure you’ve figured this out in your head by now…what does my room say? Yep. MOO,ASH. Could it be any more fitting? I giggled when I saw it. And then I got annoyed when we found out cow owner wasn’t liable. I was telling one of the nurses about the whole ordeal and a few minutes later she came in the room with my door tag in her hand and was rolling in tears. She thought it was hysterical. Irony at it’s best.
If you have lost the reason you became a mother, my heart aches for you…and I will be praying for you. I pray that you will still be celebrated as a mother…you will always be one. I can’t imagine the pain you feel each and every day. Know that your baby is still celebrating you, even if it is up in heaven.
Please continue to pray for my babies (and for me). They are doing well, but I just need to see them. I’m worried I may hurt them by squeezing them so hard when I finally get to hold them. I pray that the next time I don’t see them for more than three weeks at a time, it’s because they are away at college. I don’t think I can do this again. (God, that’s not a test, I could totally do it, I just don’t want to.)
Pray that my counts go up…and then continue to stay up. And that mouth sores stay out of this room. And that my Chemo baby disappears and my stomach isn’t distended any longer. More than anything, pray that things continue to be positive. This really has been a pretty picture perfect experience. (Knocking on wood, again.) I am so incredibly grateful for the way my body has responded.
Finally, please pray for Danny. I wasn’t sure that I could possibly love him any more than I did…but I was wrong. Way wrong. Y’all, he is incredible. He has had SO much on his plate. Hail damage on the roof, hail damage on his car, dealing with insurance for my car, loving on the babies, staying with me at the hospital, and the list goes on. This is a crazy time in our life, but man, he’s killin’ it. Meanwhile, he’s working full time…and he’s crazy busy at work right now too. He has so much going on and the stress level is so high, but you know what? You can’t wipe a smile of that guy’s face. And I absolutely love that about him. Danny Moore, you know will never know how thankful I am for you.
Thank you for the continue prayers…they are felt! I am so blessed.