Finally enough energy to check in and make an updated post. I hope everyone had a great Christmas.
Christmas Eve : I put the smaller two kids in bed at 9, and went to bed myself so I could have plenty of energy for Christmas morning. Riley was spending the night with us, so he and Kylie stayed up watching tv for a while longer. When we all got up the next morning to see what Santa left and do presents, I tried to be as normal as possible for them. Bouncing around, passing out gifts to everyone, scooping up wrapping paper and empty boxes along the way. You know how it is. By 9:30am, I was exhausted. Energy completely depleted. I rested after that for a bit and was feeling better. Sharon came over and cooked here, which sucked. I know she was trying to help since I couldn't get out, but her perfume was soooo strong and it was making me extremely nauseous even though I was taking my phenergan and zofran every 3 hours. I went and doubled up on it, and as soon as the nausea from the perfume smell subsided, the smells from all the food cooking turned my stomach again. I was trying super hard not to complain, because it's not her fault. My nose is just incredibly sensitive to smells now since I've started chemo and I HATE it. I found the peppermint oil Ashley gave me and kept sniffing it and that helped a ton, and was able to eat two small plates of ham, dressing, and green beans. That’s probably the most I’ve eaten in over a week. Seriously. Nanny took the two small kids home with her since I had chemo again the next day, and the two older kids went to their dads. Kris had to work night shift, so I was home alone and just went to bed.
Tuesday : Chemo again. Arrived at 7:45. Things went pretty smoothly today. Orders came out fine from the pharmacy and we were out of there by 1:30! Then went downstairs to radiation. This was my 5th radiation treatment by now. It’s super fast. Maybe 15 minutes tops, and that’s from sign-in at the desk to walking out the door to go home. Several people ask what it’s like. For this external radiation, I don’t feel anything. I take off my shoes, then lay on the bed in the mold they made of my body. Then they pull my pants and underwear down past my hips a few inches, and they line up the three X’s they’ve drawn on my hips and pelvis and then they send me into the donut. Take a picture with the CT scan to make sure everything is lined up, then radiation starts. It sounds like the engine of a motorcycle. That part last maybe 2 minutes. Then it slides me out, they pull up my pants and send me on my way. I don’t feel the radiation going into me but I do feel the effects. I can’t wear jeans. My skin is super irritated. I don’t like for it to be touched. It feels like a sunburn, but you can't see it. Jeans feel way too tight and uncomfortable even though I’ve lost 5 pounds already. So I’ve just been wearing leggings, but even those have to be pushed down pretty far so they’re not touching my stomach. It’s weird. I haven’t had any diarrhea or constipation yet, but they say I will. The most side effects are from the chemo. Dry mouth, even when drinking. Nausea, so much nausea. I’m currently taking Zofran and Phenergan, alternating them every 3 hours. Even at night, I set the alarm on my watch and wake up to take it because if I don’t, I’m in serious trouble.
This chemo went well. I even ate real food afterwards. Still only drinking water, Powerade and juice. I haven’t had a Dr Pepper in almost 2 weeks and I don’t even want one. Anyway, I did great all yesterday. Woke up today queasy, which quickly turned to nausea and dry heaving. So Kris’s mom took Zoey to Nan’s house and she came to drive me in for radiation. On the way, I called and got it set up to get some fluids in me. I do not want a repeat of last week. But in comparison, I was already doing better today. This time last week, I was puking nonstop and laying in the bathroom floor convinced I was dying, and I didn’t even care. Not today. Today I went and got the fluids and more meds to get help before it got to that point. It’s 8:50pm now and I’ve been able to eat a half bowl of ramen noodles, a banana and some pretzels, so that’s progress. I feel okay right now. No nausea, but my body is very tired. But again - MUCH better now than I was this time last week. I just keep telling myself I can do this.
Wednesday, December 27, 2017
Thursday, December 21, 2017
My first chemo and radiation...
They called Monday evening to let me know I was on for treatments so on Tuesday, I was all set for my first chemo and radiation.
Kris and I got there at 9am for chemo, as instructed. There were so many delays once we got in the infusion room. It's a giant room with 30-something "stations' as I called them. Each station has an awesome reclining chairs for the chemo patient, a regular chair for one person to accompany each patient, along with a small table area that has a small tv and a set of headphones. We got put in the corner nook, which only had two stations and neither one had a tv, which was fine. I had packed a bag of things Pinterest said I needed: my phone, my ipad and earbuds, a coloring book and color pencils, a notebook, a deck of cards, some snacks, and most importantly, Kris. The lady who was in the nook with us in the other chair had the same diagnosis as me, and was surprisingly receiving the exact same treatment plan as me. It was also her first day! (There were no delays for her though, so she got out much faster than us.)
I was a bundle of nerves when they started hanging bags on my IV pole. I was excited that this was starting, because that meant I was going to be one day closer to the end. I was sad because getting treatment made it real. Because in this big room, everyone in here was here for the same reason. We all have cancer of some kind or another. Some better than me, but some way worse than me. I was also determined not to feel sorry for myself, or allow myself to get sick or complain. Sis did this. I can too. I didn't get sleepy like I was told I would. Probably too many emotions to get sleepy. Same with when the chemo itself was finally going in. I expected to feel it somehow, to feel different, but I didn't. I felt the same. I had this thing on lock.
We finally finished in the infusion room at 4:15pm and went downstairs for radiation. I expected to feel that too. Pain maybe, or heat, or something. I'm not sure what. But you feel nothing at all. It's over before you know it. Finally, time to go home. I was convinced I had this under control. I was told to chug water like my life depended on it starting Sunday, and I did. I chugged all day Monday and even Tuesday while I was there getting treatment. Going to pee every 30 minutes. I was staying hydrated!
We got home at 6pm, Keri stopped by and I was fine then. I wish I could say I stayed fine but I didn’t. Around 8pm, it hit me and it hit hard. I was so nauseous and the Zofran wasn’t helping. It made it worse. I kept dry heaving. They gave me a steroids during chemo to prevent my body from puking and I swear, it was pure torture. Around 1am, I gave up and took my blanket and pillow into the bathroom and laid in the bathroom floor crying and dry heaving. Then when the steroid wore off around 4am, I couldn’t stop throwing up. I couldn’t hold down a single sip of water or Powerade, no matter how small the sip was. I’ve never in my life been so sick. My stomach hurt so bad. My head was throbbing. I was so nauseous. It was like being pregnant with morning sickness and having the flu all at the same time. I felt like I was dying. No lie.
Yesterday was a blur. I missed my 10:45 radiation appt because I was still throwing up and at that point, couldn’t even lay flat. At some point, Kris took me in and I got fluids, then went downstairs for radiation. I barely remember any of it. I remember someone asking me questions and thinking to myself, “I should know the answer to this” but I didn’t. I couldn’t even piece together a sentence in my head. Nothing made sense. It was taking everything I had to hold my eyes open. Even after getting fluids, I was still very nauseous on the way home and they told me that this wouldn’t even be the worst of it, that the 2nd and 3rd day after chemo is the worst and I just recall thinking I can’t do this, I just can’t. They called me in some phenergan and Kris picked it up for me. Between alternating that and the zofran, I managed to eat a whole piece of toast last night around 11.
Another thing about chemo is it's cold. Like not the chemo itself, but me. It makes me cold. Freezing, like I can't even describe. I can be wearing pants and a hoodie and thick socks and shoes and I'm still huddled up in a blanket. At night, I slept with and extra blanket on my side because I was so cold, even though I was wearing thick pajama pants and socks too. It's insane.
Today, I was able to eat a little bit of scrambled eggs and a half piece of bacon for breakfast, then off to radiation. I am back home now and back into my pajamas because the radiation irritates my skin. I can’t wear jeans without it somewhat hurting. I can’t explain it. So I wear real clothes there and then come home and change. I am eating chicken noodle soup as I type this. I’m still pretty weak and tired. We are staying on top of the nausea meds. Kris set alarms all night to wake up and make me take them. He says I didn’t put up a fight. I don’t know. I didn’t even look at my phone the last couple days until I was getting ready for radiation this morning. I even took off my watch because all the vibrations were annoying me. I didn’t want to be touched or feel any movement.
I hope this blog made sense. I am still pretty woozy and disoriented feeling. I’m just going to stick to soups and bland stuff til I figure out a pattern to this.
Kris and I got there at 9am for chemo, as instructed. There were so many delays once we got in the infusion room. It's a giant room with 30-something "stations' as I called them. Each station has an awesome reclining chairs for the chemo patient, a regular chair for one person to accompany each patient, along with a small table area that has a small tv and a set of headphones. We got put in the corner nook, which only had two stations and neither one had a tv, which was fine. I had packed a bag of things Pinterest said I needed: my phone, my ipad and earbuds, a coloring book and color pencils, a notebook, a deck of cards, some snacks, and most importantly, Kris. The lady who was in the nook with us in the other chair had the same diagnosis as me, and was surprisingly receiving the exact same treatment plan as me. It was also her first day! (There were no delays for her though, so she got out much faster than us.)
I was a bundle of nerves when they started hanging bags on my IV pole. I was excited that this was starting, because that meant I was going to be one day closer to the end. I was sad because getting treatment made it real. Because in this big room, everyone in here was here for the same reason. We all have cancer of some kind or another. Some better than me, but some way worse than me. I was also determined not to feel sorry for myself, or allow myself to get sick or complain. Sis did this. I can too. I didn't get sleepy like I was told I would. Probably too many emotions to get sleepy. Same with when the chemo itself was finally going in. I expected to feel it somehow, to feel different, but I didn't. I felt the same. I had this thing on lock.
We finally finished in the infusion room at 4:15pm and went downstairs for radiation. I expected to feel that too. Pain maybe, or heat, or something. I'm not sure what. But you feel nothing at all. It's over before you know it. Finally, time to go home. I was convinced I had this under control. I was told to chug water like my life depended on it starting Sunday, and I did. I chugged all day Monday and even Tuesday while I was there getting treatment. Going to pee every 30 minutes. I was staying hydrated!
We got home at 6pm, Keri stopped by and I was fine then. I wish I could say I stayed fine but I didn’t. Around 8pm, it hit me and it hit hard. I was so nauseous and the Zofran wasn’t helping. It made it worse. I kept dry heaving. They gave me a steroids during chemo to prevent my body from puking and I swear, it was pure torture. Around 1am, I gave up and took my blanket and pillow into the bathroom and laid in the bathroom floor crying and dry heaving. Then when the steroid wore off around 4am, I couldn’t stop throwing up. I couldn’t hold down a single sip of water or Powerade, no matter how small the sip was. I’ve never in my life been so sick. My stomach hurt so bad. My head was throbbing. I was so nauseous. It was like being pregnant with morning sickness and having the flu all at the same time. I felt like I was dying. No lie.
Yesterday was a blur. I missed my 10:45 radiation appt because I was still throwing up and at that point, couldn’t even lay flat. At some point, Kris took me in and I got fluids, then went downstairs for radiation. I barely remember any of it. I remember someone asking me questions and thinking to myself, “I should know the answer to this” but I didn’t. I couldn’t even piece together a sentence in my head. Nothing made sense. It was taking everything I had to hold my eyes open. Even after getting fluids, I was still very nauseous on the way home and they told me that this wouldn’t even be the worst of it, that the 2nd and 3rd day after chemo is the worst and I just recall thinking I can’t do this, I just can’t. They called me in some phenergan and Kris picked it up for me. Between alternating that and the zofran, I managed to eat a whole piece of toast last night around 11.
Another thing about chemo is it's cold. Like not the chemo itself, but me. It makes me cold. Freezing, like I can't even describe. I can be wearing pants and a hoodie and thick socks and shoes and I'm still huddled up in a blanket. At night, I slept with and extra blanket on my side because I was so cold, even though I was wearing thick pajama pants and socks too. It's insane.
Today, I was able to eat a little bit of scrambled eggs and a half piece of bacon for breakfast, then off to radiation. I am back home now and back into my pajamas because the radiation irritates my skin. I can’t wear jeans without it somewhat hurting. I can’t explain it. So I wear real clothes there and then come home and change. I am eating chicken noodle soup as I type this. I’m still pretty weak and tired. We are staying on top of the nausea meds. Kris set alarms all night to wake up and make me take them. He says I didn’t put up a fight. I don’t know. I didn’t even look at my phone the last couple days until I was getting ready for radiation this morning. I even took off my watch because all the vibrations were annoying me. I didn’t want to be touched or feel any movement.
I hope this blog made sense. I am still pretty woozy and disoriented feeling. I’m just going to stick to soups and bland stuff til I figure out a pattern to this.
Thursday, December 14, 2017
No rest for the wicked.
I’m like a zombie today. I spent the night at the ER due to some weird things going on.
Let me rewind.
You know from the last update that I got my picc line put in Tuesday. Well, I was fine that night. Groggy from the meds, but fine. Woke up around 3am bad, bad nauseous but didn’t throw up. Woke back up at 6 to get the kids up, but still felt sick, so Kris got them up and off to school. Then woke back up at 8:30ish. The nausea was gone, but my chest was hurting. It felt like someone was sitting on it. That feeling was constant, and then throw in some sharp pains here and there. I also had some times when my heart would start racing and fluttering and I had trouble breathing. It was super weird and to be honest, pretty scary. I figured it was just my body trying to adjust to having the picc line in, and that it would get better. Well, it didn’t. Just putting laundry into the dryer caused me to be completely out of breath, as if I had run 5 miles. (This is pure speculation because I’m lazy and I’ve never ran a full 5 miles, but I imagine this is what my breathing would be like.)
Kris asked me a question and I couldn’t talk louder than a whisper. I was freaking out a little, but since he had to work, I didn’t want to tell him that and have him spaz.
Fast forward, it’s after 8pm, nothing is better. I ask for some advice online from my nurse friends, and everyone says to go get my picc checked. Sharon (Kris’s mom) sees it and arranged to have Nanny come stay with the kids so she can drive me. They did an EKG, drew blood for labs, chest X-rays, and a CT scan and determined that I have Hypolakemia (low potassium) causing the irregular heartbeats and palpitations. No real explanation for my chest pains, except possible panic attack. Not sure about that because (1) do panic attacks typically last all day long? I would think not but I don’t know. (2) I had no reason to feel panicked or stressed. Not until after I had chest pains and couldn’t breathe. But the most important part is that the picc line was exactly where it was supposed to be. No leaks, no air bubbles, blood clots, embolisms, etc and that was the concern with everyone - they thought maybe it had shifted or got air or a clot. But all is well there. We finally got discharged and got home at 4am. Then back up at 6 to get the kids to school, then obviously I laid back down. So happy to have Zoey be a kid that sleeps late.
Oh and all the while, my poor husband never had a clue. He was at work. If I had told him I was going in, he would have tried to leave work and I didn’t need that. I was in good hands.
Shout outs to the following:
* Sharon & Nanny, for ALWAYS being there no matter what time it is.
* Morgan, for being the first to jump in to answer any questions and check on me today.
* Zac, for jumping in to help out and get advice from Megan (thanks to Megan as well!) and checking in on me this morning.
* Sarah & Ashlee, both for checking on me last night & offering to help.
**All of the above, for not making me feel stupid about it, and for also not telling Kris where I was. No need to worry him at work if it turns out to be nothing, like it did.
Let me rewind.
You know from the last update that I got my picc line put in Tuesday. Well, I was fine that night. Groggy from the meds, but fine. Woke up around 3am bad, bad nauseous but didn’t throw up. Woke back up at 6 to get the kids up, but still felt sick, so Kris got them up and off to school. Then woke back up at 8:30ish. The nausea was gone, but my chest was hurting. It felt like someone was sitting on it. That feeling was constant, and then throw in some sharp pains here and there. I also had some times when my heart would start racing and fluttering and I had trouble breathing. It was super weird and to be honest, pretty scary. I figured it was just my body trying to adjust to having the picc line in, and that it would get better. Well, it didn’t. Just putting laundry into the dryer caused me to be completely out of breath, as if I had run 5 miles. (This is pure speculation because I’m lazy and I’ve never ran a full 5 miles, but I imagine this is what my breathing would be like.)
Kris asked me a question and I couldn’t talk louder than a whisper. I was freaking out a little, but since he had to work, I didn’t want to tell him that and have him spaz.
Fast forward, it’s after 8pm, nothing is better. I ask for some advice online from my nurse friends, and everyone says to go get my picc checked. Sharon (Kris’s mom) sees it and arranged to have Nanny come stay with the kids so she can drive me. They did an EKG, drew blood for labs, chest X-rays, and a CT scan and determined that I have Hypolakemia (low potassium) causing the irregular heartbeats and palpitations. No real explanation for my chest pains, except possible panic attack. Not sure about that because (1) do panic attacks typically last all day long? I would think not but I don’t know. (2) I had no reason to feel panicked or stressed. Not until after I had chest pains and couldn’t breathe. But the most important part is that the picc line was exactly where it was supposed to be. No leaks, no air bubbles, blood clots, embolisms, etc and that was the concern with everyone - they thought maybe it had shifted or got air or a clot. But all is well there. We finally got discharged and got home at 4am. Then back up at 6 to get the kids to school, then obviously I laid back down. So happy to have Zoey be a kid that sleeps late.
Oh and all the while, my poor husband never had a clue. He was at work. If I had told him I was going in, he would have tried to leave work and I didn’t need that. I was in good hands.
Shout outs to the following:
* Sharon & Nanny, for ALWAYS being there no matter what time it is.
* Morgan, for being the first to jump in to answer any questions and check on me today.
* Zac, for jumping in to help out and get advice from Megan (thanks to Megan as well!) and checking in on me this morning.
* Sarah & Ashlee, both for checking on me last night & offering to help.
**All of the above, for not making me feel stupid about it, and for also not telling Kris where I was. No need to worry him at work if it turns out to be nothing, like it did.
Wednesday, December 13, 2017
Very productive day. Also, farts are funny.
Yesterday was a big (and long) day. But also a very productive one!
9am - sign in and get paperwork done for picc line.
10:30am - PICC line is in!
They numbed it, so I didn’t feel a thing at the time but it was sore once the meds wore off. If you don’t know what that is, PICC stands for “Peripherally Inserted Central Catheter” and it’s basically a permanent IV. It goes into my lower arm by my elbow and up through my upper arm, then down to my heart. See photo:
I’ll get my medications and chemotherapy through it, and when they draw blood, they’ll use it. It prevents me from having to get an IV every visit or getting poked 857 times when they draw my blood. It will stay in my arm for the next 7 weeks, at least. I can’t get it wet, so I had to buy a special neoprene shower sleeve thing from Amazon for showers. $30, but it’ll be worth it if it works. (Update - used it this morning to shower and it works great! My arm was dry as a bone!)
Left a little after 11 and got some quick lunch, then headed to next appointment at the cancer center.
12:00 - Labwork. They drew a lot of blood. Like, a lot a lot. Kris’s eyes kept getting bigger and bigger. They did it through the picc line, which was nice already not getting stuck again.
1:00pm - Radiation dept for the body mold.
Y’all, this one is going to be a little graphic (but funny) so if “tmi” isn’t your thing, I’d skip this part....
I had to lay on a table on what looked like deflated pool floats. They move my body parts around til they’re exactly like they want them, then the stuff I’m laying on inflates around me and feels super weird, but immediately hardens. It reminded me of the stuff you spray around the AC window units. Then they come pull my pants down about 6 inches and draw a black X in several spots and put some button things on them (one has already fallen off, oops) to show exactly where the beams need to be aimed I guess, and then they turn the lights down real dim and send me up into the radiation tube thing (same thing you get a CT Scan in) to do a simulation to make sure everything is where it needs to be.
So here’s where it gets funny. They run me in and out a few times and then come back into the room and this conversation happens:
Lab tech 1: Mrs. Adams, we have a problem.
Me: Okay... what’s wrong?
Lab tech 1: You have an air pocket in your rectum. We need to remove it.
Me: I have a what now??
Lab tech 2 (Nicole): You have an air bubble in your rectum.
Me: Are you saying I have a ghost fart?
Nicole: (laughs) Yes ma’am, you can call it that.
Nurse 1: Dr. Outlaw is bringing a catheter to remove it so we can proceed.
Dr. Outlaw shows up, and because I’m laying in a body mold and can’t move, they have to lift me up, pull my pants and underwear down to my knees. Then they turn on all the lights and put a lubed catheter in my butt and manually remove this so-called air pocket. I tell them this is the most bizarre thing I’ve ever experienced, and they could have at least left the lights all dim and romantic for this violation. Nicole and the other nurse’s eyes are big as saucers and they’re trying hard not to laugh. It’s dead silent. I ask what’s so funny. She said it happens a lot and sometimes when the catheter is removed, there’s a loud sound and they are waiting for it to happen. Y’all. I can’t even make this stuff up! I’ve never had someone manually remove a fart from my body. But there’s a first time for everything. Being the kind of person I am, I couldn’t wait to tell Kris. I’m so glad he embraces my weirdness and laughs with me about these things. Nicole just shook her head as I’m telling the story. She probably thinks I'm weird. She's right. She just doesn't know it yet.
2:00pm - Biopsy with Dr. Scalici.
Yep, more biopsies. She had to cut 7 individual pieces of my tumor off for the trial. Apparently I bled a lot or something, they (several people were in the room) kept asking me if I was okay over and over, telling me I was a trooper, and one hugged me when it was over and said I was the best biopsy patient ever. It hurt like a bitch but it had to be done. Except, technically, it didn’t. I agreed to the trial. I didn’t have to do this but like I said before, if this trial helps them find new ways to treat this and help other people in the future, then I’m doing it. Then they slathered my inner vag with that peanut butter stuff (still don’t know the actual name of it) that stops the bleeding and let me get dressed.
I’ll finally be starting chemo Tuesday. I go in Monday morning for ‘chemo class’ and bloodwork, then show up Tuesday for my first chemo. Pretty sure I’ll start radiation then as well.
The journey begins!
9am - sign in and get paperwork done for picc line.
10:30am - PICC line is in!
They numbed it, so I didn’t feel a thing at the time but it was sore once the meds wore off. If you don’t know what that is, PICC stands for “Peripherally Inserted Central Catheter” and it’s basically a permanent IV. It goes into my lower arm by my elbow and up through my upper arm, then down to my heart. See photo:
I’ll get my medications and chemotherapy through it, and when they draw blood, they’ll use it. It prevents me from having to get an IV every visit or getting poked 857 times when they draw my blood. It will stay in my arm for the next 7 weeks, at least. I can’t get it wet, so I had to buy a special neoprene shower sleeve thing from Amazon for showers. $30, but it’ll be worth it if it works. (Update - used it this morning to shower and it works great! My arm was dry as a bone!)
Left a little after 11 and got some quick lunch, then headed to next appointment at the cancer center.
12:00 - Labwork. They drew a lot of blood. Like, a lot a lot. Kris’s eyes kept getting bigger and bigger. They did it through the picc line, which was nice already not getting stuck again.
1:00pm - Radiation dept for the body mold.
Y’all, this one is going to be a little graphic (but funny) so if “tmi” isn’t your thing, I’d skip this part....
I had to lay on a table on what looked like deflated pool floats. They move my body parts around til they’re exactly like they want them, then the stuff I’m laying on inflates around me and feels super weird, but immediately hardens. It reminded me of the stuff you spray around the AC window units. Then they come pull my pants down about 6 inches and draw a black X in several spots and put some button things on them (one has already fallen off, oops) to show exactly where the beams need to be aimed I guess, and then they turn the lights down real dim and send me up into the radiation tube thing (same thing you get a CT Scan in) to do a simulation to make sure everything is where it needs to be.
So here’s where it gets funny. They run me in and out a few times and then come back into the room and this conversation happens:
Lab tech 1: Mrs. Adams, we have a problem.
Me: Okay... what’s wrong?
Lab tech 1: You have an air pocket in your rectum. We need to remove it.
Me: I have a what now??
Lab tech 2 (Nicole): You have an air bubble in your rectum.
Me: Are you saying I have a ghost fart?
Nicole: (laughs) Yes ma’am, you can call it that.
Nurse 1: Dr. Outlaw is bringing a catheter to remove it so we can proceed.
Dr. Outlaw shows up, and because I’m laying in a body mold and can’t move, they have to lift me up, pull my pants and underwear down to my knees. Then they turn on all the lights and put a lubed catheter in my butt and manually remove this so-called air pocket. I tell them this is the most bizarre thing I’ve ever experienced, and they could have at least left the lights all dim and romantic for this violation. Nicole and the other nurse’s eyes are big as saucers and they’re trying hard not to laugh. It’s dead silent. I ask what’s so funny. She said it happens a lot and sometimes when the catheter is removed, there’s a loud sound and they are waiting for it to happen. Y’all. I can’t even make this stuff up! I’ve never had someone manually remove a fart from my body. But there’s a first time for everything. Being the kind of person I am, I couldn’t wait to tell Kris. I’m so glad he embraces my weirdness and laughs with me about these things. Nicole just shook her head as I’m telling the story. She probably thinks I'm weird. She's right. She just doesn't know it yet.
2:00pm - Biopsy with Dr. Scalici.
Yep, more biopsies. She had to cut 7 individual pieces of my tumor off for the trial. Apparently I bled a lot or something, they (several people were in the room) kept asking me if I was okay over and over, telling me I was a trooper, and one hugged me when it was over and said I was the best biopsy patient ever. It hurt like a bitch but it had to be done. Except, technically, it didn’t. I agreed to the trial. I didn’t have to do this but like I said before, if this trial helps them find new ways to treat this and help other people in the future, then I’m doing it. Then they slathered my inner vag with that peanut butter stuff (still don’t know the actual name of it) that stops the bleeding and let me get dressed.
I’ll finally be starting chemo Tuesday. I go in Monday morning for ‘chemo class’ and bloodwork, then show up Tuesday for my first chemo. Pretty sure I’ll start radiation then as well.
The journey begins!
Friday, December 1, 2017
Hurry up and wait.
Hurry up and wait. That’s how it feels lately. Today was eventful, but at the same time, NOT eventful.
Kris got to come with me today. As soon as we walked in the first set of doors, the greeter (Dottie) jumped off her stool and said, “Hey, wait a minute!” and ran up to hug us both and told us to have a great day. Now that is how you greet someone! We were also hugged by a few other staff members throughout the day. I have yet to interact with someone there that wasn’t super nice and loving.
Met with my coordinator (Joanie) for the clinical trial today, and then had several tubes of blood drawn for the trial research. She confirmed I’d be getting the PICC line and said she’s going to get the appointment scheduled to go on and have it done.
Then met with Angel (who also loves to give hugs!) and Dr. Outlaw, who will be doing my radiation treatments. They did another vaginal (and rectal) exam. Everyone wants to meet Barb. (Barb is what I named my tumor. Read my previous blog post titled Barb if you don’t understand.) I joked with Kris that I’m getting real tired of people going up in my lady parts and up in the back door without buying me dinner, but what can ya do?
Then we went over all the details of my radiation: every weekday, Monday through Friday, for 5-6 weeks for the external radiation. Then two weeks of internal radiation called Brachytherapy, but I’m not going into those details today because all that comes after the external radiation has been completed. The external radiation visits will be 30-45 minutes each. The radiation itself is about 20 minutes. I’ll have to lay on the table inside what’s basically a body cast made from a mold of my own body. This is done to make sure I’m in exactly the same position each time, and that I can’t move during treatment. Makes sense. We went over side effects too. Because my cancer is in the cervix, everything in and closely surrounding my pelvic area will be affected by the radiation. Because the bladder is in front of the cervix, I’ll have burning and irritation that makes me feel like I have a bladder infection. Because the rectum is behind the cervix, I’ll have irritation there, but nothing that Imodium can’t fix. The intestines are close by, so they’ll be affected as well, and that results in diarrhea (can I get a double shot of Imodium?) and of course nausea and vomiting. The treatments in general will cause fatigue and she stressed to not try to do too much and always let her know about nausea immediately. On the bright side, she said all of my hair down there will fall out, so at least I don’t have to bother with landscaping my ladybits for a while. Score!! Then there’s the obvious side effect of dry, irritated skin at the site of the radiation. No baths, only showers. And she said I have to dry my area down there with a blow-dryer instead of drying it with a towel. Something about it preventing infection. The thought of blowdrying my hoo-ha with a hair dryer is cracking me up. That would make for a hilarious Amazon review, am I right?
Before radiation treatments can start, they have to send the plan to my insurance company and get their approval, which can take 3-5 business days. Once it’s approved, I’ll go in to do a simulation of the radiation and they'll make my body mold. And then, it takes a few days for them to get everything ready for the mold itself and to figure out my exact radiation amount and allow time for the doctor to tweak it until it’s exactly what she wants. So basically, it’s another week and a half to two weeks before treatment starts, at least for radiation anyway. Hence the title, hurry up and wait. Sigh. But at least I can drive myself to/from radiation, as long as nausea is kept under control. (I’m not allowed to drive myself to/from chemo.)
The question everyone keeps texting me and asking: How do I feel? Here’s the thing. I’ll always say fine, because not only does it seem like a good response to a vague question, but mostly because I don’t want to unload on people. That’s what this blog is for. So this is where I wrote how I really feel. If you have specific questions to ask, I’ll answer those. I have no problem answering anything, anytime. (Are you nauseous today? How’s the bleeding? Does anything hurt?)
So for the real answer... I’m nervous, but not scared. Yet, anyway. I’m mostly ready to just start. I’m tired of gushing blood. Tired of cramps and stabbing pains in my pelvis. Tired of feeling lightening bolts zapping around in my hooha. (I’m told this is because my tumor is growing sideways and it’s causing my cervix to dilate, the same as when you’re in labor to give birth. Awkward...) Tired of not knowing when this will start because I can’t plan holidays or events or anything on any days because I don’t know if I’ll be feeling sick or half dead on whatever day. We have 5 birthday party invitations on the fridge and a couple more on Facebook, all of which I can’t RSVP to because I just don’t know. It sucks, but my doctors seem to have a fantastic plan to prevent all the nausea and vomiting from happening, so I’m staying optimistic, but still cautious when RSVPing to events.
I did get get my flu shot the other day like I was told. The same day, Kris went to urgent care because of an upper respiratory infection. He got his flu shot too, and 3 prescriptions of meds. Then yesterday Zoey woke up snotty and stuffy and running a fever. So much for staying away from sick people. Pretty sure hers is just her sinuses from this stupid weather. 38 degrees in the mornings, 75 by lunch. Ridiculous.
So anyway, that’s where I stand today. I feel like I’m forgetting something. There’s always so much information to take in and it always leaves me mentally exhausted and with a bad headache. I’ll update again when/if I remember.
If if you’re still with me reading this, sorry it’s so long. I write more details than you probably want to know because I also post this for myself to help me remember everything.
Kris got to come with me today. As soon as we walked in the first set of doors, the greeter (Dottie) jumped off her stool and said, “Hey, wait a minute!” and ran up to hug us both and told us to have a great day. Now that is how you greet someone! We were also hugged by a few other staff members throughout the day. I have yet to interact with someone there that wasn’t super nice and loving.
Met with my coordinator (Joanie) for the clinical trial today, and then had several tubes of blood drawn for the trial research. She confirmed I’d be getting the PICC line and said she’s going to get the appointment scheduled to go on and have it done.
Then met with Angel (who also loves to give hugs!) and Dr. Outlaw, who will be doing my radiation treatments. They did another vaginal (and rectal) exam. Everyone wants to meet Barb. (Barb is what I named my tumor. Read my previous blog post titled Barb if you don’t understand.) I joked with Kris that I’m getting real tired of people going up in my lady parts and up in the back door without buying me dinner, but what can ya do?
Then we went over all the details of my radiation: every weekday, Monday through Friday, for 5-6 weeks for the external radiation. Then two weeks of internal radiation called Brachytherapy, but I’m not going into those details today because all that comes after the external radiation has been completed. The external radiation visits will be 30-45 minutes each. The radiation itself is about 20 minutes. I’ll have to lay on the table inside what’s basically a body cast made from a mold of my own body. This is done to make sure I’m in exactly the same position each time, and that I can’t move during treatment. Makes sense. We went over side effects too. Because my cancer is in the cervix, everything in and closely surrounding my pelvic area will be affected by the radiation. Because the bladder is in front of the cervix, I’ll have burning and irritation that makes me feel like I have a bladder infection. Because the rectum is behind the cervix, I’ll have irritation there, but nothing that Imodium can’t fix. The intestines are close by, so they’ll be affected as well, and that results in diarrhea (can I get a double shot of Imodium?) and of course nausea and vomiting. The treatments in general will cause fatigue and she stressed to not try to do too much and always let her know about nausea immediately. On the bright side, she said all of my hair down there will fall out, so at least I don’t have to bother with landscaping my ladybits for a while. Score!! Then there’s the obvious side effect of dry, irritated skin at the site of the radiation. No baths, only showers. And she said I have to dry my area down there with a blow-dryer instead of drying it with a towel. Something about it preventing infection. The thought of blowdrying my hoo-ha with a hair dryer is cracking me up. That would make for a hilarious Amazon review, am I right?
Before radiation treatments can start, they have to send the plan to my insurance company and get their approval, which can take 3-5 business days. Once it’s approved, I’ll go in to do a simulation of the radiation and they'll make my body mold. And then, it takes a few days for them to get everything ready for the mold itself and to figure out my exact radiation amount and allow time for the doctor to tweak it until it’s exactly what she wants. So basically, it’s another week and a half to two weeks before treatment starts, at least for radiation anyway. Hence the title, hurry up and wait. Sigh. But at least I can drive myself to/from radiation, as long as nausea is kept under control. (I’m not allowed to drive myself to/from chemo.)
The question everyone keeps texting me and asking: How do I feel? Here’s the thing. I’ll always say fine, because not only does it seem like a good response to a vague question, but mostly because I don’t want to unload on people. That’s what this blog is for. So this is where I wrote how I really feel. If you have specific questions to ask, I’ll answer those. I have no problem answering anything, anytime. (Are you nauseous today? How’s the bleeding? Does anything hurt?)
So for the real answer... I’m nervous, but not scared. Yet, anyway. I’m mostly ready to just start. I’m tired of gushing blood. Tired of cramps and stabbing pains in my pelvis. Tired of feeling lightening bolts zapping around in my hooha. (I’m told this is because my tumor is growing sideways and it’s causing my cervix to dilate, the same as when you’re in labor to give birth. Awkward...) Tired of not knowing when this will start because I can’t plan holidays or events or anything on any days because I don’t know if I’ll be feeling sick or half dead on whatever day. We have 5 birthday party invitations on the fridge and a couple more on Facebook, all of which I can’t RSVP to because I just don’t know. It sucks, but my doctors seem to have a fantastic plan to prevent all the nausea and vomiting from happening, so I’m staying optimistic, but still cautious when RSVPing to events.
I did get get my flu shot the other day like I was told. The same day, Kris went to urgent care because of an upper respiratory infection. He got his flu shot too, and 3 prescriptions of meds. Then yesterday Zoey woke up snotty and stuffy and running a fever. So much for staying away from sick people. Pretty sure hers is just her sinuses from this stupid weather. 38 degrees in the mornings, 75 by lunch. Ridiculous.
So anyway, that’s where I stand today. I feel like I’m forgetting something. There’s always so much information to take in and it always leaves me mentally exhausted and with a bad headache. I’ll update again when/if I remember.
If if you’re still with me reading this, sorry it’s so long. I write more details than you probably want to know because I also post this for myself to help me remember everything.
Wednesday, November 22, 2017
Yesterday was a long day...
On Nov. 13th, I had an appt for a PET Scan & then on Nov. 20th, an MRI. Yesterday, I had an appointment to go over the results of them. It appears that the cancer is currently contained to the cervix, and is not attached to the ligament like Dr. Scalici (pronounced Scuh-Lee-See) was concerned about. However, there is a spot on one of my lymph nodes that "lit up" in the tests, so she's going to be watching that. At this time, it's still undetermined if the cancer is a stage 1B2 or a 2A because now it depends on that dang lymph node spot.
I had to have another biopsy done. This makes the 5th one they've done on my cervix. How many pieces can they cut off before none is left? The biopsy itself isn't even the worst part, it's the peanut butter stuff they cake up inside you to stop the bleeding it causes. She calls it the peanut butter stuff because that's exactly what it looks like, but when it comes out of you, it's clumpy, grainy, and black like coffee grounds. So gross.
Then we talked more about treatment. I'll be on a very agressive, brutal treatment plan. Their words, not mine.
CHEMO: I'll do 5-7 weeks of it, (specifically, Cisplatin) once a week. This will be done every Tuesday. Even though the chemo itself will only take 45 minutes to an hour, these appointments will be about 6 hours long due to everything else that goes along with chemo. There's labwork to check my white blood cell count and determine my dosage for the day. Then I wait for them to get it ready. In the meantime, I get a bag of IV fluids to help hydrate me and prevent headaches. Then the chemo itself, and then another bag of IV fluids. Somewhere along the way, I'll also get anti-nausea meds in my IV, as well as a steroid to prevent me from throwing up, because apparently this chemo drug they're putting me on it bad enough to make me very sick, according to her. After chemo is over, I go downstairs to radiation.
RADIATION: I'll get external radiation for 5 weeks on a daily basis, Monday through Friday. How nice to have weekends off, ha. I am not sure yet how long this process takes. That will be explained to me in detail by Dr. Outlaw since she is the one who will be administering the radiation treatments. Once that's over, I'll have to do 2 weeks of Brachytherapy (pronounced Brake-E-therapy). I will be honest and admit that I am slightly terrified of this. When I was doing all of my research on treatments, I read about this one and how awful it was, and hoped my doctor wouldn't mention this. But, here we are. Brachytherapy is internal radiation. They'll insert metal rods into the vagina and they'll touch the tumor and administer radiation directly into it. I read that it is very painful. Unfortunately, Dr. Scalici confirmed this. Anyway once the rods are inserted, they'll do a CT scan to make sure they're exactly in the right place, then blast the tumor. I'll have two weeks of this treatment. The first week will be a Mon, Wed, Friday treatment, then the next week will be a Mon & Weds treatment. Absolutely NOT looking forward to this.
I was talked to about chest ports, picc lines, and IVs. They think the picc line is best for me. I'd already figured this considering all the research I've done, so now I have to find a cute picc sleeve to wear because I know my clingy little princess will accidentally yank it out of my arm trying to snuggle or play with me. I also have to order a special shower sleeve since it can't get wet. And the costs keep adding up.
I was recommended to get a flu shot, and to avoid anyone and everyone who is sick since my immune system will be compromised. Even the slightest sickness on my part will prevent me from being able to get treatment and will delay the process.
Dr. Scalici wants me to to participate in a clinical trial for Immunotherapy. She told me a little about it, and then had the research director, Daisy, come in and give me the details. There aren't any crazy side effects and they do the treatments on chemo day, so that part isn't so bad. But the other parts won't be so fun. It involves a lot more blood-drawing, and three more biopsies - two of which will be extreme enough that I'll have to be put to sleep. I don't get paid for any of this, but they cover the extra testing, as well as the trial drugs they give me. Kris isn't happy about it. He says I am not a guinea pig, and no, I'm not... but I have two daughters, and a lot of female friends. But most importantly, two daughters who could get cervical cancer someday and if this trial can help find something that can heal cancer faster like they think it can, then I am participating. Worst case scenario, it doesn't work. But at least I can say I tried. So needless to say, I agreed and did the 17 pages of paperwork on it.
Lastly, I received my appointment to meet with Dr. Outlaw on Dec. 1st and was informed that once you see her, you move at lightning speed because she likes to start treatment within a week. I'm not looking forward to it, because I am scared. I didn't want any of this. I wanted to have surgery and be done. But that's not an option, so now I'm ready to get this over with.
Finally, sometime after 4pm, I got to go home. I'd been there since 10:45am. I was exhausted mentally and physically, and laid there last night in bed with my head spinning in a million directions, just thinking of how this is about to be my life. Long, long days just to get up and do it all over again the next day, and the next day, and so on for the next 7 weeks. I'm already stressing over someone having to take care of Zoey every day, the kids being home alone after school for however long, and who is going to deal with the dog while I'm there. I can't drive myself to chemo due to the nausea and stuff, so they said someone needs to drive me. Definitely stressing over the bills. Holy hell, the bills. We JUST THIS WEEK finally paid off the deductible, only to have it turn around and start over in January. Kris is working overtime as much as possible to help keep our heads up as good as we can, so he can't be with me and he's stressing about that.
Overall, I'm trying to stay positive. I know this cancer isn't going to kill me. But my God, this stress possibly will.
I had to have another biopsy done. This makes the 5th one they've done on my cervix. How many pieces can they cut off before none is left? The biopsy itself isn't even the worst part, it's the peanut butter stuff they cake up inside you to stop the bleeding it causes. She calls it the peanut butter stuff because that's exactly what it looks like, but when it comes out of you, it's clumpy, grainy, and black like coffee grounds. So gross.
Then we talked more about treatment. I'll be on a very agressive, brutal treatment plan. Their words, not mine.
CHEMO: I'll do 5-7 weeks of it, (specifically, Cisplatin) once a week. This will be done every Tuesday. Even though the chemo itself will only take 45 minutes to an hour, these appointments will be about 6 hours long due to everything else that goes along with chemo. There's labwork to check my white blood cell count and determine my dosage for the day. Then I wait for them to get it ready. In the meantime, I get a bag of IV fluids to help hydrate me and prevent headaches. Then the chemo itself, and then another bag of IV fluids. Somewhere along the way, I'll also get anti-nausea meds in my IV, as well as a steroid to prevent me from throwing up, because apparently this chemo drug they're putting me on it bad enough to make me very sick, according to her. After chemo is over, I go downstairs to radiation.
RADIATION: I'll get external radiation for 5 weeks on a daily basis, Monday through Friday. How nice to have weekends off, ha. I am not sure yet how long this process takes. That will be explained to me in detail by Dr. Outlaw since she is the one who will be administering the radiation treatments. Once that's over, I'll have to do 2 weeks of Brachytherapy (pronounced Brake-E-therapy). I will be honest and admit that I am slightly terrified of this. When I was doing all of my research on treatments, I read about this one and how awful it was, and hoped my doctor wouldn't mention this. But, here we are. Brachytherapy is internal radiation. They'll insert metal rods into the vagina and they'll touch the tumor and administer radiation directly into it. I read that it is very painful. Unfortunately, Dr. Scalici confirmed this. Anyway once the rods are inserted, they'll do a CT scan to make sure they're exactly in the right place, then blast the tumor. I'll have two weeks of this treatment. The first week will be a Mon, Wed, Friday treatment, then the next week will be a Mon & Weds treatment. Absolutely NOT looking forward to this.
I was talked to about chest ports, picc lines, and IVs. They think the picc line is best for me. I'd already figured this considering all the research I've done, so now I have to find a cute picc sleeve to wear because I know my clingy little princess will accidentally yank it out of my arm trying to snuggle or play with me. I also have to order a special shower sleeve since it can't get wet. And the costs keep adding up.
I was recommended to get a flu shot, and to avoid anyone and everyone who is sick since my immune system will be compromised. Even the slightest sickness on my part will prevent me from being able to get treatment and will delay the process.
Dr. Scalici wants me to to participate in a clinical trial for Immunotherapy. She told me a little about it, and then had the research director, Daisy, come in and give me the details. There aren't any crazy side effects and they do the treatments on chemo day, so that part isn't so bad. But the other parts won't be so fun. It involves a lot more blood-drawing, and three more biopsies - two of which will be extreme enough that I'll have to be put to sleep. I don't get paid for any of this, but they cover the extra testing, as well as the trial drugs they give me. Kris isn't happy about it. He says I am not a guinea pig, and no, I'm not... but I have two daughters, and a lot of female friends. But most importantly, two daughters who could get cervical cancer someday and if this trial can help find something that can heal cancer faster like they think it can, then I am participating. Worst case scenario, it doesn't work. But at least I can say I tried. So needless to say, I agreed and did the 17 pages of paperwork on it.
Lastly, I received my appointment to meet with Dr. Outlaw on Dec. 1st and was informed that once you see her, you move at lightning speed because she likes to start treatment within a week. I'm not looking forward to it, because I am scared. I didn't want any of this. I wanted to have surgery and be done. But that's not an option, so now I'm ready to get this over with.
Finally, sometime after 4pm, I got to go home. I'd been there since 10:45am. I was exhausted mentally and physically, and laid there last night in bed with my head spinning in a million directions, just thinking of how this is about to be my life. Long, long days just to get up and do it all over again the next day, and the next day, and so on for the next 7 weeks. I'm already stressing over someone having to take care of Zoey every day, the kids being home alone after school for however long, and who is going to deal with the dog while I'm there. I can't drive myself to chemo due to the nausea and stuff, so they said someone needs to drive me. Definitely stressing over the bills. Holy hell, the bills. We JUST THIS WEEK finally paid off the deductible, only to have it turn around and start over in January. Kris is working overtime as much as possible to help keep our heads up as good as we can, so he can't be with me and he's stressing about that.
Overall, I'm trying to stay positive. I know this cancer isn't going to kill me. But my God, this stress possibly will.
Sunday, November 12, 2017
Let's talk about Barb...
In an attempt to stay in good spirits, I decided to name this tumor so we can refer to it by name instead of always saying "the cancer." It's not that I don't want to acknowledge it, but it's just funny.
So why "Barb?" Easy. We love the Netflix show "Stranger Things" and it just seemed right that we call her Barb after poor ol' Barb in that show. Poor Barb was always around, but no one seemed to notice. And the few times they did notice, they didn't care.
That's kinda how I was about this tumor at first. I knew something was there, I just didn't care enough to make time to deal with it, so I just went on with life and ignored it, the way they all did Barb. By the time Nancy and the others remembered Barb existed, she was already in the Upside-Down. My tumor is up in my hoo-ha, and that's basically my upside down. Ha!
If you haven't seen the show, then you won't get it. But if you have, well... am I right?
If you haven't seen the show, then you won't get it. But if you have, well... am I right?
In all seriousness, tomorrow at 1pm, I have a PET Scan. It will be my first, and I'm not sure what to expect. I know they said no food or drink for 6 hours before the appointment. (WHAT?)
Also said no carbs, no sugar, no caffeine 18 hours before the appointment. (DOUBLE WHAT??)
Barb isn't going to kill me, but this lack of real food and drink is going to be what takes me out. I can't even...
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