So, not much has really been concluded since Monday. Everything came back normal, and my nurse has called me every day to check on me. I've honestly been feeling really good. I mean, I still am having bathroom issues, I can't taste anything, and my skin is dry, but I can function now. I've gone to work, taken care of Julia, grocery shop, cook, etc. I'm living life again.
Wednesday night was the first night in a week that I got a solid 7 hours of sleep. I felt like a million bucks the next morning! I told my nurse I was having trouble sleeping, so she told me it was okay to take something like Tylenol PM or Z Quil. Done! I was so desperate to get more than 4 hours of sleep. I'm so glad it worked.
Yesterday I woke up with a sore throat, so my nurse said to come in today. I saw the nurse practitioner, and she said it could be thrush. So she prescribed me an antibiotic. She also wanted to see if my blood counts were still low, and if so she'd prescribe another prescription to eliminate the chance of infection. At this point, I could probably have my own pharmacy.
I think right now the most frustrating side effect is my lack of taste. I LOVE food. I constantly eat. I love cooking every night. Now, all food tastes the same. Broccoli would have the same taste as a cookie. It's so sad. Especially because there's nothing that can be done about it. For now, I'll take advantage of my 7 hours of sleep and try to dream about the day when I will be able to appropriately taste food again.
4.14.2017
4.10.2017
I'm Not Crazy!
Today I had an appointment with Dr. U. He wanted to check in with me since this was my first chemo session. His nurse asked me all of my symptoms and side effects and I had my little journal and listed them off. She kept looking at me funny, then said she'd send Dr. U in.
Dr. U walked in and sat down pretty close in front of me and just said, "Ok, what's going on?" I described how I've been feeling the past week and he wrote notes on the butcher paper of the examination seat. Then he sat for a second and then said, "Shit."
"Uh oh...that's not good!" I thought. He started kind of thinking out loud and said that I shouldn't be feeling this badly. That the chemo I'm getting shouldn't cause diarrhea, he already gave everything in his arsenal for nausea, that this chemo doesn't really cause nausea that badly, and the rash/acne really threw him off. He said for the heartburn he could prescribe something for me, and that was easy to take care of. But he was kind of confused by the others, and the timing and the delays of them didn't seem right to him. Then he examined my stomach and pushed down and asked if it hurt. It did.
He kind of sat there thinking for a while, and I said, "Sorry." I felt bad being this case that stumped him. Although I've been kind of an anomaly this entire journey. Why stop now, right? He said, "Don't say sorry, it's not your fault. I just have to figure this out in two weeks so you don't have to keep going through this again."
He ordered blood work, an abdominal X-ray, and a stool sample. He said all this could be the chemo, but in the case that it's something else, he wants to make sure so that we completely rule that out and we're not ignoring another issue. He is also having his nurse call me every day to monitor how I'm doing.
I got everything done afterwards, so hopefully I'll get some answers in the next few days. While it's somewhat concerning that something else could be going on, it was mentally comforting to hear that maybe I'm not as weak as I thought I was. Last week was such an immense struggle, and knowing that it shouldn't have been like that made me feel better. Maybe we can make the next go around a little easier. Here's to hoping!
Dr. U walked in and sat down pretty close in front of me and just said, "Ok, what's going on?" I described how I've been feeling the past week and he wrote notes on the butcher paper of the examination seat. Then he sat for a second and then said, "Shit."
"Uh oh...that's not good!" I thought. He started kind of thinking out loud and said that I shouldn't be feeling this badly. That the chemo I'm getting shouldn't cause diarrhea, he already gave everything in his arsenal for nausea, that this chemo doesn't really cause nausea that badly, and the rash/acne really threw him off. He said for the heartburn he could prescribe something for me, and that was easy to take care of. But he was kind of confused by the others, and the timing and the delays of them didn't seem right to him. Then he examined my stomach and pushed down and asked if it hurt. It did.
He kind of sat there thinking for a while, and I said, "Sorry." I felt bad being this case that stumped him. Although I've been kind of an anomaly this entire journey. Why stop now, right? He said, "Don't say sorry, it's not your fault. I just have to figure this out in two weeks so you don't have to keep going through this again."
He ordered blood work, an abdominal X-ray, and a stool sample. He said all this could be the chemo, but in the case that it's something else, he wants to make sure so that we completely rule that out and we're not ignoring another issue. He is also having his nurse call me every day to monitor how I'm doing.
I got everything done afterwards, so hopefully I'll get some answers in the next few days. While it's somewhat concerning that something else could be going on, it was mentally comforting to hear that maybe I'm not as weak as I thought I was. Last week was such an immense struggle, and knowing that it shouldn't have been like that made me feel better. Maybe we can make the next go around a little easier. Here's to hoping!
 |
| Hello! -From the fish in the lobby! |
4.09.2017
Fool
What a fool I was.
I was so silly to think that this would be tolerable. That I would just have a few "tired" days, eventually lose my hair, and everything would pretty much go on as normal. I feel so stupid.
I've been at war with my body these last few days. I have no idea what it's doing. No control over what happens. I'm angry with it. I'm angry with it for not being stronger. I'm angry with it for making me be emotionally weak. I'm angry with it for limiting me. I'm angry with it for not letting me be the mom I should be.
I've kept a journal of all of my symptoms so that I can notice patterns and see what I experience on specific days after the session to better prepare for next time. Here is how I've felt the last week:
My appetite is totally suppressed, and mouth is always dry and has a metallic taste. In fact, both the roof of my mouth and my tongue have the same sensation of when you burn it on hot soup. So even when I do eat, it tastes like a lot of nothing.
The nausea killed me the first few days. They gave me a steroid and 2 anti-nausea meds, and it suppressed it, but it never went away until maybe mid-day Friday. That also made me not want to eat.
I'm tingly in my limbs from elbow and knees down, but I'm achy everywhere, mainly my joints. The achy feeling is all over, but then I'll also get random shooting pains throughout my body during the day.
And then I'm just weak. Like a sailboat with no wind. Going to Hobby Lobby yesterday to pick up 2 picture frames sucked the life out of me. We were at the checkout waiting for an attendant, and I was scanning the area for a nearby chair. No luck. So I leaned on the counter and put my weight on that. The woman behind us I'm sure was like, "What the heck is going on with her?" But I didn't care.
And of course, there's the never ending diarrhea and heart burn. Fun times.
All in all, imagine being drunk, hungover, and having the flu all at once. That's how I feel.
I feel weaker than others. A friend who had it 3 years ago said she just had 2 tired days and then went back to work. The nurses said that this chemo was very "tolerable" and I should be able to go on with my daily life with no major issues. Well here I am, and I've missed 3 days of work. Thank God I work for an organization that I love, that has supportive supervisors and co-workers. I went to work Thursday because of the pressures I put on myself. I should have just rested that day, and maybe I would have been fine on Friday. Instead, I called my mom Friday crying. She was great and came over after work to help with Julia and to just help take care of me. But I'm upset that I even need help. I should be the one helping others. Not the other way around.
I've been extra weepy these past few days. Julia's teacher sent me a text on Friday and it said:
"Just wanted to pass on that when we were outside today Julia came up and asked for a hug. I asked her if she was ok and she said, "My mommy is still sick and the next time she gets her medicine, her hair will come out, but I won't be scared because it will grow back and she will get better soon." She wasn't upset, jus very matter of fact about it! You guys are doing such a great job of keeping her in the loop about what's ahead! She is such a special young lady, Malita."
I started crying. Again for the two reasons I previously posted about, which is I hate that she's having to think about this, but also so incredibly proud. That girl amazes me. She is my role model. But just like her mommy, she can't always be strong.
Last night, Eric was getting ready to bring her upstairs to put her to bed. She started crying and said that she wanted me to put her to bed, and Eric explained that I needed to rest. She cried more, hugged me and said, "I miss you so much!" Then I started crying. I was right there, but to her, she feels as though I've been absent. And I have been. I'm absent from the mother I normally am. And not that I'm super, perfect mom every day. Lord knows I'm not. But I'm a better version than what I have been lately. We ended up compromising, and I told her to go upstairs and have daddy help with pjs, and that I would come and read and do prayers with her.
..............................................................................................................................
Julia just came in and taught me a lesson. I'm laying in bed writing, and Julia has woken up and come into my room. She climbs into bed with me we had a thoughtful conversation:
M: Do you want to go and paint a mug for grandpa's birthday today?
J: Yeah.
M: And it's going to be nice outside today, you could blow some bubbles.
J: Yeah, but we have to get dressed and somebody has to go outside with me. Maybe daddy can go outside with me because he's not sick. You're sick so you can't go outside with me.
M: Well, maybe I could go outside today. We'll see how I feel. We'll just have to treat each day special and see what we can do.
J: Ok
So there we go. Lesson learned. I'll just have to take things day by day. See how far I can push without exhausting myself. The journey to not be at war with my body will continue I'm sure, but hopefully get better over time. I need to learn acceptance and humility. I need to not be a control freak (in all aspects of my life). And while I know that not all of that can be solved overnight, I need to just be open minded and try to pray and work on those things a little bit every day.
I was so silly to think that this would be tolerable. That I would just have a few "tired" days, eventually lose my hair, and everything would pretty much go on as normal. I feel so stupid.
I've been at war with my body these last few days. I have no idea what it's doing. No control over what happens. I'm angry with it. I'm angry with it for not being stronger. I'm angry with it for making me be emotionally weak. I'm angry with it for limiting me. I'm angry with it for not letting me be the mom I should be.
I've kept a journal of all of my symptoms so that I can notice patterns and see what I experience on specific days after the session to better prepare for next time. Here is how I've felt the last week:
My appetite is totally suppressed, and mouth is always dry and has a metallic taste. In fact, both the roof of my mouth and my tongue have the same sensation of when you burn it on hot soup. So even when I do eat, it tastes like a lot of nothing.
The nausea killed me the first few days. They gave me a steroid and 2 anti-nausea meds, and it suppressed it, but it never went away until maybe mid-day Friday. That also made me not want to eat.
I'm tingly in my limbs from elbow and knees down, but I'm achy everywhere, mainly my joints. The achy feeling is all over, but then I'll also get random shooting pains throughout my body during the day.
And then I'm just weak. Like a sailboat with no wind. Going to Hobby Lobby yesterday to pick up 2 picture frames sucked the life out of me. We were at the checkout waiting for an attendant, and I was scanning the area for a nearby chair. No luck. So I leaned on the counter and put my weight on that. The woman behind us I'm sure was like, "What the heck is going on with her?" But I didn't care.
And of course, there's the never ending diarrhea and heart burn. Fun times.
All in all, imagine being drunk, hungover, and having the flu all at once. That's how I feel.
I feel weaker than others. A friend who had it 3 years ago said she just had 2 tired days and then went back to work. The nurses said that this chemo was very "tolerable" and I should be able to go on with my daily life with no major issues. Well here I am, and I've missed 3 days of work. Thank God I work for an organization that I love, that has supportive supervisors and co-workers. I went to work Thursday because of the pressures I put on myself. I should have just rested that day, and maybe I would have been fine on Friday. Instead, I called my mom Friday crying. She was great and came over after work to help with Julia and to just help take care of me. But I'm upset that I even need help. I should be the one helping others. Not the other way around.
I've been extra weepy these past few days. Julia's teacher sent me a text on Friday and it said:
"Just wanted to pass on that when we were outside today Julia came up and asked for a hug. I asked her if she was ok and she said, "My mommy is still sick and the next time she gets her medicine, her hair will come out, but I won't be scared because it will grow back and she will get better soon." She wasn't upset, jus very matter of fact about it! You guys are doing such a great job of keeping her in the loop about what's ahead! She is such a special young lady, Malita."
I started crying. Again for the two reasons I previously posted about, which is I hate that she's having to think about this, but also so incredibly proud. That girl amazes me. She is my role model. But just like her mommy, she can't always be strong.
Last night, Eric was getting ready to bring her upstairs to put her to bed. She started crying and said that she wanted me to put her to bed, and Eric explained that I needed to rest. She cried more, hugged me and said, "I miss you so much!" Then I started crying. I was right there, but to her, she feels as though I've been absent. And I have been. I'm absent from the mother I normally am. And not that I'm super, perfect mom every day. Lord knows I'm not. But I'm a better version than what I have been lately. We ended up compromising, and I told her to go upstairs and have daddy help with pjs, and that I would come and read and do prayers with her.
..............................................................................................................................
Julia just came in and taught me a lesson. I'm laying in bed writing, and Julia has woken up and come into my room. She climbs into bed with me we had a thoughtful conversation:
M: Do you want to go and paint a mug for grandpa's birthday today?
J: Yeah.
M: And it's going to be nice outside today, you could blow some bubbles.
J: Yeah, but we have to get dressed and somebody has to go outside with me. Maybe daddy can go outside with me because he's not sick. You're sick so you can't go outside with me.
M: Well, maybe I could go outside today. We'll see how I feel. We'll just have to treat each day special and see what we can do.
J: Ok
So there we go. Lesson learned. I'll just have to take things day by day. See how far I can push without exhausting myself. The journey to not be at war with my body will continue I'm sure, but hopefully get better over time. I need to learn acceptance and humility. I need to not be a control freak (in all aspects of my life). And while I know that not all of that can be solved overnight, I need to just be open minded and try to pray and work on those things a little bit every day.
 |
| Morning cuddles. |
4.05.2017
Chemo Session #1
Well, here we go! Session number one. Eric and I both dropped Julia off at school earlier than usual. As I left her, one of her teachers handed me a bag with the softest, cream colored blanket inside of it. I thanked her a lot (I LOVE BLANKETS!!) and she had tears welling up in her eyes and said, "I was Julia. I was Julia because my mom went through exactly what you're going through. I started welling up and hugged her. It's amazing how those women in that school have rallied around us, and more importantly Julia. I can't tell you how comforting it is to know that your only baby is being taken care of, and well. And that in these rougher waters, she has an oasis.
We arrived to the cancer center around 8:15 and did my vitals. The nurse asked, "Is this your first treatment?" I said yes, and she was surprised. She said, "You seem so calm!" I said, "Well, might as well go after it, right? You gotta do what you gotta do." Then I went back to see Dr. U. It was a quick visit, but before he walked me back he said, "Well, after today you'll be a quarter of the way through!" Then Eric said, "You're halfway, halfway done!" Dr. U said he liked that and was gonna use that one in the future instead.
Then we got to the chemo room, and since I was a first timer, got placed in a private room next to the nurses station. Perk: you get a tv. My nurse was great and I liked her a lot. But what I feared came true.
Dr. U was against getting a port surgically placed in my chest since I'm only doing 4 sessions, and said we would just do it through the IV. But I know I have terrible, fragile veins. Because they took a lymph node two years ago, I've always been told to do my blood pressure and any IVs or blood draws on my right arm, which is limiting. They tried 5 different times on my left hand, to no avail. It's painful each time you do it. My left hand looks like a connect the dots page. Eric said he was getting upset, and so was I. When someone pokes you and digs around 4 different times, irritability sets in. Finally they called a third person in to try, and they asked Dr. U if they could use my left arm and he said yes. Finally, after 30 minutes of this, the new nurse got it in on the first try. I guess sixth time's a charm!
So we were finally on our way. The first bag was an anti-nausea med, then a flush. Then it was the first med which is the Taxotere, which took an hour. Then a short flush, then the second bag, the Cytoxan, which was another hour.
During that time, Eric and I watched The Price is Right! We also had many visitors. First a few volunteers who are "Faces of Hope" because they have all been through similar paths. They are there to talk or not, or bring you any juice or snacks, blankets, or pillows. Then the hospital chaplain came in and we all chatted for a while, and then we all prayed together. Then my dad came with Portillos, and my mom eventually met us during her lunch hour. We had a good time chatting and watching Wheel of Fortune.
Towards the middle of the second bag (the Cytoxan) I started getting this odd pain in my sinuses and behind my eyes. It was hard to describe. Also, they warned me that everything would taste like metal, but I didn't realize that side effect would rear its ugly head so instantaneously. This was me:
 |
| Her teacher sent me this photo and said that Julia said that she was feeling, "extra snuggly." |
Then we got to the chemo room, and since I was a first timer, got placed in a private room next to the nurses station. Perk: you get a tv. My nurse was great and I liked her a lot. But what I feared came true.
Dr. U was against getting a port surgically placed in my chest since I'm only doing 4 sessions, and said we would just do it through the IV. But I know I have terrible, fragile veins. Because they took a lymph node two years ago, I've always been told to do my blood pressure and any IVs or blood draws on my right arm, which is limiting. They tried 5 different times on my left hand, to no avail. It's painful each time you do it. My left hand looks like a connect the dots page. Eric said he was getting upset, and so was I. When someone pokes you and digs around 4 different times, irritability sets in. Finally they called a third person in to try, and they asked Dr. U if they could use my left arm and he said yes. Finally, after 30 minutes of this, the new nurse got it in on the first try. I guess sixth time's a charm!
 |
| After we finally got the IV in. Eric said, "Only you would smile for this picture." |
During that time, Eric and I watched The Price is Right! We also had many visitors. First a few volunteers who are "Faces of Hope" because they have all been through similar paths. They are there to talk or not, or bring you any juice or snacks, blankets, or pillows. Then the hospital chaplain came in and we all chatted for a while, and then we all prayed together. Then my dad came with Portillos, and my mom eventually met us during her lunch hour. We had a good time chatting and watching Wheel of Fortune.
 |
| Gotta have your Portillo's. |
 |
| Eric picked this up at the snack table. I told him he should have proposed with this. He said he wished he would've known that. |
We stopped on the way home to pick up a few items at the store that we had forgotten, and then came home to rest. I was happy to get to my computer and crank out a bunch of emails and work for a few hours before we had to pick up Julia. I was feeling a bit nauseous and weak, but ok.
 |
| Chance, Sense and Sensibility (my favorite movie when I'm sick), and my new, aforementioned blanket! |
Then Julia got home and as the night grew on I got sleepier and sleepier. I told Julia I needed to lie down, and she said, "Well I don't want you to lie down!" (She gets upset when I'm not 100%) So I said, "Well mommy doesn't feel well, so I need to rest so I feel better." So she said, "Oh, well I have a cold, so I need to lay under the blanket and rest with you." I happily obliged.
By 7:00 I could barely keep my eyes open, but I pushed to 8:00 so I could take an anti-nausea med. My nurse had told me to set an alarm for 3:00am to make sure I got up to go to the bathroom to flush my system. I woke up before the alarm at 2:30am and then couldn't fall asleep for the life of me. I was feeling sick and took another anti-nausea med. I tried to fall asleep, but I couldn't stop thinking and the nausea didn't help. I ended up ordering some photos at Meijer online and watching Friends. I finally fell asleep around 4 for about an hour. Then I was up again and then it was time to shower. I was absolutely planning on going to work today, but then it got messy, literally.
I got in the shower, and it was starting to hit me hard. Then I heard Julia come in and said she had to go potty. I stopped my shower, and she announced that she had peed all over the toilet. At this point, I was about to lose it. Eric was in his bathroom, and we share a wall, so I banged on it, and said, "I need your help!" So here I am, sopping wet, wrapped in a towel, about to throw up. Julia is on the toilet, pee all over, pants down. Eric picks her up, wipes up the pee, and took her into her room to change. I shut the door, lift the toilet seat, and hang out there for a while. Luckily, I didn't throw up.
But I was nervous that with that combination of nausea and the weakness, I didn't think I'd make the long drive to work. So I decided to play it on the safe side, especially because this is the first time and I don't know how the days will play out. I've started a journal for each day, and have written down the symptoms I experience and then rate them on a scale of 1-5. That way I can keep track of any patterns and remember for the next sessions. Today I've spent my morning working which is good. So I'm happy about that.
I've also definitely noticed the lack of appetite the nurse warned me about. I usually snack all day and eat lunch as early as 11:00. Today I had a small bowl of cereal, and by 1:00, I hadn't eaten anything else. I didn't even feel hungry, but my stomach was growling up a storm. So I had some pretzels and cheddar cheese. Then I just had cottage cheese and pineapple. So the grazing is happening. Today is also a day where my mother-in-law is home with Julia, so she's been helping me and is cooking homemade chicken noodle soup as we speak! It's smelling great! Maybe the appetite is coming after all. We'll see how tomorrow goes.
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