I started this post several days ago…and a lot has happened since then. So I guess I’ll update with the most recent stuff and then go back and continue my post from before about finishing Round 5.
So…Friday I felt okay. I had my PET scan in the morning, felt decent afterwards for most of the day. Danny and Lexi had their first indoor soccer game for the season…at 10:30…at night. Yah, I’m too old for that. Hud stayed with Danny’s mom and Harper came with me. (Don’t judge for me keeping her out so late…she’s never been able to watch Danny play soccer, so I let her go with me.) She went and she loved it. She wore her favorite pajamas, fancy boots, bright pink cape, and mask. Yep. She sure did. I suppose every daddy soccer player needs their own super hero cheering them on.
Once we got home from the game, I started feeling pretty rotten. My throat was starting to hurt and sores that I had in my mouth (from the chemo) were getting worse. You know those darn canker sores you get and how obnoxious they are? Yah well just imagine one of those…and then multiply it…all over your mouth.
I was in bed all of Saturday. I hurt all over and my throat seemed to be getting worse by the hour. Saturday night, Harper and I watched a movie in bed while Danny went to hang out with the neighbors. (Cancer, I hate you for not letting me spend as much time with my neighbors recently…not cool. Not cool at all.)
Sunday morning, I woke up feeling hor-ri-ble. I didn’t want to go to Urgent Care, but I wasn’t sure what to do. I ended up calling the on-call oncologist and asking his opinion. My throat was awful at that point so I wasn’t able to eat or drink much…and I was probably already dehydrated at this point…so add that to the mix and you’ve got yourself a hot mess.
Because of the intensity of the chemo I’ve been getting, he highly recommended that we go to either Urgent Care or the emergency room. He wanted me to be tested for Strep and Thrush and have a complete blood count workup. So, off we went.
As expected, I was diagnosed with Thrush…and my blood counts were horrible. So to be honest, it shouldn’t have been a surprise that I felt as bad as I did. My white count was .3. Not 3, not 30…point 3. Folks…that’s low. And it essentially means at this point, I can’t fight off a darn thing. My red count was 2.5, Hemoglobin was 7.7 (was 6.6 last time when I got an infusion), and platelettes were 31. The doctor at the Urgent Care gave me an antibiotic for the Thrush and suggested that I go in first thing in the morning and have my blood checked again and to get in to see my doctor as soon as possible. I already had an appointment for blood work on Monday morning, so I was just going to continue with that appointment.
As the day went on, I started feeling progressively worse. I messaged one of my nurses from the hospital and asked her opinion on if I should tough it out until the morning and continue with my appointment, or if I should go ahead and go to the ER. For me to voluntarily go to the ER, you know I wasn’t feeling well.
She said that either option would be fine…but that if I was in pain, couldn’t eat or drink, or had a fever, then I should go to the ER. I was experiencing 2/3 so I should go to the ER, right? That would make sense…but no. I decided to just tough it out and that I would go in the morning.
Well. We made a mistake. We should have listened to her and went ahead to the Emergency Room that night. Ugh. I woke up Monday morning and felt the absolute worst I’ve ever felt. The past 24 hours was by far the worst time I’ve had so far. I didn’t enjoy it…not one bit. My mom was going to come up and take me to my appointment…but I couldn’t wait that long. I was in tears brushing my teeth because I was in so much pain. So Danny called his mom and she came over to watch the kiddos, and he took me straight to the ER and my mom met us there. I hadn’t been running a fever at all…not since before I was diagnosed, in fact. When we got to the ER, I had a fever. Fabulous. The biggest thing with chemo you always hear is, “If your temperature is over 100.3, go straight to the ER.” Apparently it’s super dangerous to have a fever when you’ve been getting chemo. So why wouldn’t I get a fever? Just wanted to shake things up a bit.
So while I was in the ER, I received 4 liters of fluid for dehydration, medicine for the fever, and some other antibiotic for my throat. And, none of it really seemed to help. My blood pressure went nuts and dropped to 78/32. I had blankets on blankets on blankets and blankets wrapped around my head. I was miserable. I eventually got admitted. The ER doctor said it would most likely be on the 4th floor (throw your hands up and praise the Lord!). I was going to get to see my nurses again. (This is what authors call foreshadowing.)
Let me just tell you. When the room was finally ready, the guy who was transporting me said, “Alrighty, we’re headed to room 326.” I’m sorry, but I think you made a mistake. Unless 326 happens to be on the 4th floor, you sir, are out of your mind.
He wasn’t out of his mind. The 4th floor was full…and my heart was broken. I was here being treated for Thrush and a fever…and now a broken heart. (I know, I know, a little dramatic…but it’s like this. You plan a trip with your friends that you don’t live near and then right before the trip, someone tells you you can’t go.) Okay, that’s a total stretch, but man, I was bummed. Real bummed.
So we get up to the 3rd floor and y’all, I’ll already admit it. It didn’t have a chance. We were put into a nice sized room…but the sink (with no mirror) was the size of sink you’d find in a prison cell. And the toilet…I’m still thankful it didn’t swallow me. I have never seen anything like it. It was gi-gan-tic. And it just wasn’t the same. The nurse I had was nice. But that was about it. The nurses on that floor (I can really only speak for the one I had, but I’m assuming it’s similar for most) just didn’t get the whole chemo/cancer dynamic. There was no sense of urgency for anything…and that was a little alarming.
And then, God chimed in. I was sitting on the bed watching TV and the charge nurse came in a said, “We just got a call from the 4th floor and they are requesting that you be moved up there and a room just became available…are you okay with that?” I should have received an Oscar for my response. “Oh really? Yeah, I guess that’s fine.” (What?! Of course that’s fine! That amazing! I get to see all of my girls again. The girls that understand.) So now we just had to wait for the room to be cleaned. And I’m telling you…with how long it took, I’m pretty sure a massacre had occurred in that room. It took for.ev.er. But I didn’t care. I was over the moon. Maybe that was all the medicine I needed. While we were waiting, after being told by 2 different doctors and a nurse that they were calling in a throat spray, we finally got the spray. By the way they had talked about it, I was expecting it to work miracles. It.did.nothing. Not a thing. So that was fantastic. Not to mention that was probably a $300 bottle of nothing.
In the mean time, my fever went back up. Again. My throat was awful and wasn’t getting any better. At one point, my fever was up to 103.1…and yah, that’s not good. That’s really high. I had recently taken Fiorocet for my headache and then I started freezing…which I assumed meant a fever was coming. And boy was it a big one. 103 fevers are scary even when you haven’t had chemo. My mom went out and asked to have my temperature taken because they hadn’t been in to check in a while. Once they realized it was so high, I assumed that meant I would have Tylenol immediately. The nurse came in, said to give him 5-10 minutes to get the medicine and come back. 30 minutes later, still no medicine. (This is the lack of sense of urgency that I was talking about earlier.) Danny text and asked if I had gotten the medicine yet and I said no. Whoops. He was not a happy camper…and that guy is always happy. I agreed to call the nurse, although I was sure I would wet my pants because I’m a big weenie when it comes to raising heck with anything. I hung up and started to dial the nurses number…and right then, he walked in. Woot woot. Didn’t have to raise a stink. I got the medicine and he also mentioned that at midnight, I would get the “Magic Mouthwash”. That was four hours from now…why the hold up? Shortly after that, the room was ready.
Once we got upstairs, I felt at peace. I still felt TERRIBLE, but I knew I would be taken care of. Right after we got settled in the room, I asked the nurse about the mouthwash and I had it within 10 minutes. I’m telling you, these 4th floor nurses…incredible. I had a nurse that I hadn’t had before, but she was precious…and so very thorough. She was so good at what she does.
The night, however, sucked. It was the worst night I’ve ever had. I thought the past few days were bad…but this one took the cake. I couldn’t get rid of my fever. And the chills. Oh my word. One minute I was freezing cold, shaking…and the next, I had to change my clothes because I was soaking wet. My pillow was drenched. In the middle the night I had a fever of 101 something so they gave me some Fiorocet for my headache and Tylenol for the fever…and the fever continued to go up. The sweet nurse then said she was sorry…and then put ice packs on me. Not cool, nurse, not cool. The fever eventually broke, but I still just felt awful. The Magic Mouthwash didn’t seem to do anything. Fabulous. So I still hadn’t eaten. I can never decide on food that sounds good, but at this point, I would have eaten cooked dirt had it been offered.
I was up every 30 minutes or so getting my vitals checked, changing out medication, etc. and I just couldn’t sleep feeling so awful. Eventually at around 5, my fever finally broke and I haven’t had one since then…going strong for 14 hours or so. I’ve still had a pretty rad headache for a lot of the day, but nothing like it was with the fever.
Here’s a fancy word for why I was feeling so awful–I’m neutropenic. Apparently neutropenia happens when your white blood count gets so low that you can’t fight off anything. This also means all of the hospital staff that comes in the room has to wear a mask, if I leave the room for a few minutes, I have to wear a mask, etc. So let me just tell you. I’m not a fan of neutropenia. In fact, I think it’s stupid.
Dr. Stone came in at about 7:30 and said that my counts had dropped since yesterday so was going to order a blood transfusion. Last time I had a transfusion, it helped my headaches, so I was all in. Bring on the blood!
Yesterday when he came to check on my once I was admitted, he told me that I needed to cancel my appointment with the bone marrow doctor because I wasn’t going to be out of the hospital by then. My heart broke a little because I’ve been so anxious about this appointment. But, I asked Dr. Stone if he would discuss the results with us either over the phone or in person whenever he got them. He said he would absolutely do that as soon as he got them.
With that being said, I called and rescheduled our appointment with Dr. Matthews for Friday morning. Dr. Stone said we should shoot for next week, but I’m hopeful I’ll be better and discharged by Friday…so we’re going with that.
Dr. Stone ended up calling late morning with the results. Get ready, y’all. I don’t know what I was expecting…but I’m not sure I was expecting what he said. Ready?
…wait for it…
…are you getting anxious?…
After two additional rounds of treatment, the tumor has continued to shrink…now from about 6.6 cm to 5.6 cm. In a previous post regarding PET scan results, I have mentioned the term ‘uptake’. Uptake is essentially showing active cancer. If there is a lot of active cancer, a lot of uptake will appear on the scan. If it’s not very active, less uptake will appear. From the second scan, we had learned that the uptake was a lot less than the very first scan, which was great news.
Want even better news? There was little to no uptake on this scan! Did you
hear me see what I said? The tumor is still there (we knew that it would be), but the lymphoma is essentially inactive. PRAISE.THE.LORD. There is no other answer than to say that these results are a direct result of the prayers we have received.
Dr. Stone was thrilled with the results. He actually used the word ‘thrilled’. I didn’t think doctors used words like that. He also mentioned that there was no new evidence of cancer anywhere else. Boo-yah! Take that, cancer! Get outta my body! No room for you here.
So basically, we couldn’t have hoped for better results. Now we meet with the bone marrow doctor and he will determine if we need one more round…and hopefully we will get some more details about the bone marrow transplant.
Oh yah, there was one small kink in our day yesterday. After Dr. Stone had called with the results, the Infectious Disease doctor (who had been keeping up with me during this hospital stay) happened to be looking over my chest x-rays from when I came in on Monday. I had talked to her once earlier in the day yesterday regarding my throat, but nothing more than that. Anyway, early afternoon yesterday, she called my room and my mom answered. She asked my mom to ask “the patient” if I had previously had a nodule on my lower right lobe of my lungs because a 2 cm nodule was showing up in the x-rays. Umm…excuse me?! And the answer was no, “the patient” had not previously had a nodule in her lungs. Well heck. This lady didn’t only rain on our parade, she straight up shut it down and then punched me in the gut.
Needless to say, after we hung up, my mom, Danny, and I began to panic a bit. It was just so contradictory. We had JUST heard from my oncologist about the PET scan and he had specifically mentioned that there was NO evidence of anything new. What in the world? Why would the nodule not show up on the PET scan? It’s like we knew in our hearts that it wasn’t cancer because it would have to have shown up in the scan…but in the back of our heads, questions were flowing.
So, we talked with my nurse and told her the situation. She said that she was going to try to call Dr. Stone immediately and get clarification for us. She called…and called…and couldn’t get through to him. But she said that the charge nurse at the time just so happens to work at my oncologist’s office as well…so she told her about the situation. (Let me just note how much I appreciate their urgency. It wasn’t really a big deal, but they could tell that we were scared and that it was alarming considering we had just received really good news. They stopped what they were doing and make sure we were taken care of. Point for the angels.)
Minutes later, Sherrie (charge nurse) came in and said that she talked with Dr. Stone and he said to absolutely not worry about the nodule. If it was cancer, it would have been picked up on the PET scan. She said that he was confident that the nodule in my lung was related to the infection I have been fighting in my throat. What a relief.
Just a bit later, I got a call from Dr. Stone’s nurse, assuring me that he fully believed that the nodule was not related to the lymphoma and that she hopes that this brings some relief. I’m telling you guys…best nurses, best doctor. I’m a
lucky blessed girl.
Real quick–I know I’ve posted about sweet Claire that I taught several years ago. Another one who touched my heart. We’ve kept in touch, I adore her family, and so on. Claire has twin sisters who are so.stinkin’.cute. While I was in the hospital, they picked up Harper and had her over for a play date. Harper was over the moon giddy when she knew she was going to get to go play with them. Here are a few pictures from their day. Jill, Claire, Brooke, and Alli…thank you so much for taking time out of your day to make my sweet girl feel special and forget about everything going on. Not only have you been a blessing to me, you’ve been a blessing to her as well.
So now, we wait for our appointment on Friday…while hoping and praying for a plan. Oh, and I have to get healthy enough to get discharged from the hospital…there is that small detail. I have to be fever free for 48 hours…so that puts me leaving on Thursday morning. That’s what I’m hoping for.
P.S. Since this hospital stay wasn’t planned, I didn’t have any room decorations. And let me tell you. Every single nurse and doctor that came in commented on it. “Umm…the decorations? Where are they?” “I’m sorry, I’m confused. I don’t see any decorations. Are you in the wrong room?” It made me laugh because it made me realize that not only did the decorations make me happy, they obviously made a positive impact on everyone else as well. So for anyone who has taken part in making decorations during any of my hospital stays…thank you, from the bottom of my heart.
P.S.S. My sweet nurse, Katy, came up on Tuesday and brought me a chocolate shake. She wasn’t working. She just knew it would make my smile. Another point for the Angels. Sweet Katy, you made my day…and you made me feel loved.
In other news, my eyebrows are almost completely gone. And I officially look like a sick cancer patient. (News Flash: I am a sick cancer patient. This shouldn’t come as shocking to me…but it does, every single time I look in the mirror.) God must have laughed at me every time I prayed to keep my eyebrows and eye lashes. I haven’t quite caught on to His sense of humor yet.
Now back to the post I was working on before getting sick…
It has been over a week since I finished Round 5…but man, I’m still feelin’ it. It has been a LONG week. This round wasn’t nice to me. Not at all.
Eventually, things will turn around and I’ll start to feel better…but for now, I continue hating chemo.
Round 5 ended up going pretty smoothly. I had some wonderful visitors and got some more time with my amazing nurses.
I had 3 other special visitors, but I’m working on a separate post for them. I started writing it in this post and then it got really, really long…so in order to keep my readers happy, I cut it into two different posts. (Danny said I may lose some readers if I make it too long.)
Side note: While I was in for Round 5, first grade had their PTA musical performance. All along I had been so excited to go, but it just so happened that it fell during one of my treatments…so this girl didn’t get to see it in person. But check this out.
And, most importantly, my babies were loved on all week…and neither of them got sick! (Knock on wood! This is a record!) They sure are cute. Hudson has been becoming obsessed with his sister lately. He LOVES her. He watches her all the time. Wants to be right next to her every second. And she can make him laugh like no one else.
Danny’s birthday was the Friday I got out. He was able to spend most of the day up here with me…lucky him. 🙂 One of my favorite nurses caught wind that it was his birthday and had a cake delivered to our room. Seriously…who does that?! It was so thoughtful and such a kind gesture. Katy, you are one of a kind, my friend. Your kindness does not go unnoticed.
Danny had quite the birthday celebration weekend. The guys in our neighborhood took him out Friday night. Saturday we went to a shower for some dear friends who are expecting their first baby at the end of this month. Sunday morning, over 20 neighbors and their kids joined us for brunch to celebrate Danny. And finally, Sunday afternoon, we celebrated his birthday at his mom and stepdad’s house with his brother, his wife, and our two nephews. It was a wonderful weekend celebrating an incredibly positive, genuine man who we love so much.
Here are some pictures from after Round 5.
Some recent #TeamAshley pictures…
One more thing. My school…I have talked a lot about my school and how incredible it has been during this whole ordeal (and before that, but that’s beside the point).
This past week, they held a raffle for 4 FC Dallas season pass tickets and parking. The tickets were donated by FC Dallas with the intention of being raffled off, and the proceeds would go to our family. What a blessing. People we don’t even know making crazy donations to help our family. Y’all, my school didn’t disappoint. The raffle was from Tuesday-Friday and tickets were $1. Not $5 to $10…$1. And you know how much money they raised? Over $1,000. Incredible. Just when I think we couldn’t possibly be blessed anymore by my school, things like this happen.