Life has just been busy lately. Last time I updated, I was waiting for my scan to see if the cancer was gone, and have my ‘end of treatment’ visits. I am thrilled to report that as of May 1st...
I am officially CANCER FREE!
Guys, I’m in remission!!!
It seems like all of this happened so fast, and at the same time, it feels like it lasted for years. I slowly got my energy back and started feeling like my old self, so we have been doing yard work. I even painted my daughter’s bedroom pink, something she’s been asking for since we bought the house. We spend a lot of time outdoors now. The kids are in the pool every chance they get, and I’ve even started working out again in the past week. I’ve basically had to start over with lighter weights, which stinks, but at least I am able to do it. I’ll get better and stronger.
My appetite has returned, but I’ve learned that since I could go weeks eating basically nothing while on treatments, that I could change my eating habits to healthier options. So far, I’ve done really well. We still have pizza occasionally, I mean we aren’t dead, just healthier. Ha! Shellfish still makes my tummy angry. I'll bloat up, have awful stomach pains, and diarrhea. Sushi just doesn’t do it for me anymore. That sucks. I love sushi. Or I guess now I should say loved. Past tense.
Even though the cancer is gone, the side effects from the treatment are definitely still here. I still have diarrhea a lot, which the doctor says is normal from the radiation damaging my bowels. She was very surprised that I don’t have any bladder and kidney issues since that’s normal side effects afterwards. ::Knock on wood::
: : : TMI ALERT : : :
I still have a lot of discharge. Sex is complicated. It hurts, but it’s getting better. The internal radiation causes a lot of scar tissue on your vaginal walls inside there, and as a result, they try to shrink up. Now you think this would be a good thing, and you’d be acting like Madonna and singing “Like A Virgin” but that’s not how it is. It’s painful. The doctors typically suggest using a dilator (google it, it’s basically a dildo with a different name) daily to stretch it back out to its normal size, but I was like nah I’m good without that. They said I could do things the natural way if I preferred and that’s what we’ve been trying, but the way he works, it’s hard. So as much as it sucks, I’m going to resort to the dilator to speed up the process of being normal again. I’d like to have pain free sex again. I have no issues with toys, don’t get me wrong. But using it for medical purposes isn’t as appealing as it is for play purposes. And using it daily is a chore when it’s summer and there’s kids in the house all the time. I can’t even go poop without someone trying to find me. This will have to be an after-bedtime routine, I guess. My white and red blood cell counts are still in the low range, but they’re in the upper-low range, so they’re closer to normal. That’s good news!
The bad news is that bills just keep coming. Ugh. In hindsight, I wish we would have waited until January to start the treatments and everything, because it would have cost us a lot less. Our insurance covers 70% and we pay the other 30%, with a max of $10,000 out of pocket. The problem with that, is that is per year. So since we started at the end of the year with all the tests and scans in Sept. and treatments in December, we had to pay that $2500 deductible upfront plus our 30% and then start allllll over again with another $2500 deductible and everything in January. So basically two $2500 deductibles, and two $10K our of pocket costs for us since everything started/happened at the end of the year.
We had two fundraisers done for us, thanks to the MBKFA (the kayak fishing club we are members of) and the SeaHut/Ernie Hall (who sold Boston Butts) for us. My Aunt Kim had also set up a GoFundMe account for us. All the money from those went to cover everything from last year, and the deductible for this year. But as of right now, we’re still around 8 grand mark in bills currently owed (BARF) and I still have to go every 3 months for checkups. But it is what it is. I’m alive and I’m healthy. And we have the pool, so it’s not like the kids will have a boring summer. I’ve also decided to take on some babysitting during the summer to help with finances, and come August, I’ll be keeping a newborn during the week. I’m still selling Younique, but most of my customers moved on to another consultant when I started treatments and stopped being an active seller, so business sucks there. But I’m still trying. That’s all I can do.
I’m definitely in menopause, thanks to radiation effects. I haven’t had a period since January, thankfully. I don’t really have mood swings anymore, but those hot flashes and night sweats are a total bitch! One second I’m fine, the next second it feels like I just opened the oven door and I’m wiping sweat off of my forehead and arm. It’s crazy. I also have weird creepy-crawly skin, where it feels like something is crawling on me, but it really isn’t. Dry skin too. Lotion is my new best friend. Sleep is a thing of the past. I was never a good sleeper anyway, but now it’s even harder between the above mentioned issues and just insomnia in general. I’ve taken Tylenol PM and Zzzquil and nothing helps. I can fall asleep, I just can’t stay asleep for more than an hour.
Thursday, May 31, 2018
Wednesday, April 4, 2018
Blown vein, but no pee!
I mean, not that I thought it was to begin with...
I had my CT scan Monday morning and it took forever because the doctor (not MY doctor, but that sub doctor that said I needed to do the scan) ordered the wrong dang test so they had to wait for him to get there at 8am (my appt for the scan was 7am) so they could have him order the correct test, then call my insurance company and get it approved. I was tired and grumpy and hungry (no food after midnight and I’m not a morning person regardless) and now I’m getting a catheter shoved up my peephole in a room that I swear is 10 degrees below zero and they tell me to hold still. Then the girl giving me the IV blows two of my veins - actually she says one “just disappeared...” - and asks if nurses usually have a hard time giving me IVs. Uh no, they don’t. She says she’s going to try again and my irritable self says, “Can you not? Get someone else.” The other girl gets it the first try. Now I have a nasty bruise on my arm from the blown vein. Look!
They send me in the machine, so some scans, pull me out, inject the dye into my IV, send me back in for more scans. Pull me out, fill my bladder with clear fluid, send me back in for more scans. Pull me back out, try to drain my catheter but it only removes half the liquid, so they remove the catheter, then bring me a bedpan and tell me to pee. Excuse me miss, I can not pee with you standing there holding a pan under me, and I definitely can’t do it laying down flat. (They say I can’t sit up.) I mean I tried, but my head is like no dummy, you don’t pee in the bed. So they send me back in for scans but say my bladder is still too full and let me get up to go to the actual bathroom. I come back, lay down, do more scans. Then remove the IV and I’m on my merry way to warmer temperatures and the Waffle House. You know it’s cold when the Waffle House is considered a warmer place.
Joanie called me yesterday and said the preliminary report was in from the CT scan, and that no fissure or tears were found, and my bladder looked fine. It also said that my tumor showed positive results from the therapy. (Well, duh.) She said the doctor will call and give me more details later after they look over the scans and everything, but she wanted me to know what she saw. I told her that I quit taking the hormone pills and that watery discharge was nearly gone, so that tells me that it was obviously a side effect of the hormone pills. I told Joanie how altos thinks the treatments have caused me to be allergic to the iodine in shellfish and she said she’s never heard of that, but it’s possible, and even more possible with me because I’m The Backwards Child. That’s her nickname for me because basically everything that should be a side effect for something, I didn’t have, and the ones I did have, I had backwards. She told me on the phone that because of all that, she loves doing research with me and that I’m her favorite patient ever. That makes my heart happy. I really love her and I’m going to miss her terribly.
I’m smelling things. Kris had on some aftershave today and when he kissed me bye to go to work tonight, he smelled so nice, and I was like wait come back. Ha. This smelling thing isn’t so bad in times like that. I’ve never smelled that before even though he says he’s always worn it. I don’t know why suddenly I can smell things again, but as long as they don’t make me nauseous or sick, then it’s all good.
That’s all I’ve got for now. When the doctor calls with more details, I’ll post them, of course. She did give me some more appointments:
** April 24th, I’ll do labs/bloodwork and then see Dr. Scalici for the ‘end of treatment’ visit.
** April 26th, I’ll have my CT/PET Scan for my big “is the cancer gone” cancer update!
** May 2nd, I’ll have my last biopsy.
** May 10th, I’ll see Dr. Outlaw (my radiation oncologist) for a follow up appointment.
I had my CT scan Monday morning and it took forever because the doctor (not MY doctor, but that sub doctor that said I needed to do the scan) ordered the wrong dang test so they had to wait for him to get there at 8am (my appt for the scan was 7am) so they could have him order the correct test, then call my insurance company and get it approved. I was tired and grumpy and hungry (no food after midnight and I’m not a morning person regardless) and now I’m getting a catheter shoved up my peephole in a room that I swear is 10 degrees below zero and they tell me to hold still. Then the girl giving me the IV blows two of my veins - actually she says one “just disappeared...” - and asks if nurses usually have a hard time giving me IVs. Uh no, they don’t. She says she’s going to try again and my irritable self says, “Can you not? Get someone else.” The other girl gets it the first try. Now I have a nasty bruise on my arm from the blown vein. Look!
They send me in the machine, so some scans, pull me out, inject the dye into my IV, send me back in for more scans. Pull me out, fill my bladder with clear fluid, send me back in for more scans. Pull me back out, try to drain my catheter but it only removes half the liquid, so they remove the catheter, then bring me a bedpan and tell me to pee. Excuse me miss, I can not pee with you standing there holding a pan under me, and I definitely can’t do it laying down flat. (They say I can’t sit up.) I mean I tried, but my head is like no dummy, you don’t pee in the bed. So they send me back in for scans but say my bladder is still too full and let me get up to go to the actual bathroom. I come back, lay down, do more scans. Then remove the IV and I’m on my merry way to warmer temperatures and the Waffle House. You know it’s cold when the Waffle House is considered a warmer place.
Joanie called me yesterday and said the preliminary report was in from the CT scan, and that no fissure or tears were found, and my bladder looked fine. It also said that my tumor showed positive results from the therapy. (Well, duh.) She said the doctor will call and give me more details later after they look over the scans and everything, but she wanted me to know what she saw. I told her that I quit taking the hormone pills and that watery discharge was nearly gone, so that tells me that it was obviously a side effect of the hormone pills. I told Joanie how altos thinks the treatments have caused me to be allergic to the iodine in shellfish and she said she’s never heard of that, but it’s possible, and even more possible with me because I’m The Backwards Child. That’s her nickname for me because basically everything that should be a side effect for something, I didn’t have, and the ones I did have, I had backwards. She told me on the phone that because of all that, she loves doing research with me and that I’m her favorite patient ever. That makes my heart happy. I really love her and I’m going to miss her terribly.
I’m smelling things. Kris had on some aftershave today and when he kissed me bye to go to work tonight, he smelled so nice, and I was like wait come back. Ha. This smelling thing isn’t so bad in times like that. I’ve never smelled that before even though he says he’s always worn it. I don’t know why suddenly I can smell things again, but as long as they don’t make me nauseous or sick, then it’s all good.
That’s all I’ve got for now. When the doctor calls with more details, I’ll post them, of course. She did give me some more appointments:
** April 24th, I’ll do labs/bloodwork and then see Dr. Scalici for the ‘end of treatment’ visit.
** April 26th, I’ll have my CT/PET Scan for my big “is the cancer gone” cancer update!
** May 2nd, I’ll have my last biopsy.
** May 10th, I’ll see Dr. Outlaw (my radiation oncologist) for a follow up appointment.
Friday, March 30, 2018
MENOPAUSE... and the end of treatments.
Freakin' menopause, ha! Yeah, the chemo and radiation killed my ovaries. Like actually caused them to dry out and shrivel up, apparently, and put my body into menopause. I'd been having crazy side effects from that...
* Crazy mood swings (I cried SIX times in one day and poor Kris was just at a complete loss of what to do.)
* Hot flashes and night sweats. I've been having these for a couple years now, but nothing to this extent. I'm talking like get so hot that I can't breathe, and get so sweaty that my shirt is soaked and I have to change it at 2am.
* CRS syndrome (can't remember shit) and that makes sense considering I couldn't remember to tell y'all about the thing that makes me forget everything. Seriously, everyone who knows me knows that I have an amazing memory. I remember everything. I remember conversations from years ago in detail. (I've never been able to remember where I park at Walmart, though.) But now... now I seriously forget everything. Sometimes I'm not sure that I actually forgot the thing, or if I just never knew it in the first place.
* Insomnia, which this is partially related to the hot flashes. One minute I'm freezing. Full-on teeth-chattering freezing, and you can count to 10 and I'm burning up, sweating. Obviously, this constant back and forth keeps me awake a lot, having to cover up and then throw the covers back off again 4 minutes later. It's stupid.
I don't mind it though. I have been asking for menopause for years. Everyone older than me told me I wouldn't want it when I do get it, and now that it's here... you're wrong, I still want it, side effects and all, because this is better than what my body has been through up to this point. I haven't had a period since I was in radiation. I've skipped 3 periods so far. I should actually be on my period right now, according to the period tracker app I have on my phone. I haven't convinced myself to delete it yet. My doctor put me on hormone pills 3 weeks ago to help with the symptoms I've been experiencing, and while they helped my night sweats, hot flashes/chills, and mood swings a little, I did some research two days ago and saw that the Estradiol she gave me specifically says not to use if you've had cancer of the cervix and other things) and I realize that she knows what she's doing, but I also saw that it causes weight gain and more importantly, increases the risk of ovarian and uterine cancer. Needless to say, I stopped taking it. I'd rather deal with the crazy moods and body temp issues than increase my chances at more cancer. #nothankyou
:: WARNING - it's about to get pretty personal. ::
I also noticed that, about a week after starting the hormone pills, I got some watery discharge. And by some I mean a lot. A pantyliner wasn't cutting it anymore. I bumped up to a pad, an then progressed to having to change the pad a couple times a day. I was beginning to think I was peeing myself and not knowing it. I mean, it makes sense because remember for the brachytherapy, they were putting catheters in and out of me every visit, s I figured maybe that could cause some issues that could cause me to have urine leakage. Do you know what that's like?? I mean, I still have diarrhea DAILY thanks to radiation's effects on my bowels and intestines. So to add accidental peeing to the list is just like, come on now... It's confusing because it didn't smell like pee, and it wasn't the color of pee. It's just clear and watery. So anyway, I did a tampon test. I put a tampon in and decided that if I still experienced the leakage, then I'd know I was leaking pee. (Ew.) So I popped one in and went on about my day. A few hours later, I was still DRY so no pee, woohoo. Time to take the tampon out. Except, it won't come out... It hurt. Like, bad. Y'all have read the things I've been through recently. All the biopsies, the catheters, the rods going in my vag, all the very painful things that I got though... but this really hurt. I had to take a deep breath, grit my teeth, and pull it out. You'd think I'd never worn a tampon before! I don't know what the deal was, but I was glad it was out and that I'd confirmed that I wasn't peeing myself accidentally. 😀
Fast forward to two days ago (Wednesday.) I went in for my last immunotherapy treatment and as usual, had to see the doctor beforehand to discuss any issues I'd been having. Dr. Scalici was doing surgery on someone, so I saw one of her partners, Dr. Jones. He was super nice and super gentle when examining me. He said he saw some normal discharge in there, but not the watery stuff I was describing. Hmm. I told him about the tampon test, which he said was really smart thinking. He thinks I have a fissure, and I have to get tested to find out for sure. Basically, a fissure is a tear and he thinks that I have one at the bottom of my bladder that's causing small amounts of urine to leak into my vagina and come out that way - hence the watery discharge. So basically I was right AND wrong, because if this is the case, it means I am leaking pee, just not from my pee hole. So now I'm scheduled to go in at 7:30 Monday morning to have a CT scan where they inject dye into my bladder to see where it goes, if there is indeed a fissure, and identify the exact location of it. I swear, if it's not one thing, it's another. I asked him is I could just take some Azo and see that way, because Azo turns your pee bright orange and if it's leaking into my vag and coming out there, then it'll be on the tampon. I wish you could've seen his face when I asked that. He said it was genius.
I will say that yesterday, I did perform my Azo test, but results were inconclusive for reasons I won't get into, except to say that there was orange on the tampon, but not in the place you'd think it would be, so we were confused. We, as in me and Kris. He's the best. You know, when you meet an awesome man and fall in love, you plan your life and you make the "for better or worse" vows but you never really expect the worse part to happen. But he stayed though it all, right by my side, and yesterday, he stood right there and physically analyzed this used tampon with me. Then we took new/clean tampons and performed experiments with them to try to recreate the liquid flow that my body creates. We used Listerine since it's colored and it as right there. We didn't learn anything from our experiment, but I will say that was the freshest-smelling tampon ever. So now we just wait until Monday and find out what in the world is going on. Personally I am just hoping it's a side effect of the hormone pills since I didn't have this discharge until *after* I started taking them, and I'll know soon since I quit taking them. I'm really hoping it's NOT a fissure like the doctor thinks, because in his words - "it's not something that is easily corrected." Surgery would be required. I'm trying not to think much about that right now, since I really don't think that's the case.
Soooooo, that's where we are now.
* Crazy mood swings (I cried SIX times in one day and poor Kris was just at a complete loss of what to do.)
* Hot flashes and night sweats. I've been having these for a couple years now, but nothing to this extent. I'm talking like get so hot that I can't breathe, and get so sweaty that my shirt is soaked and I have to change it at 2am.
* CRS syndrome (can't remember shit) and that makes sense considering I couldn't remember to tell y'all about the thing that makes me forget everything. Seriously, everyone who knows me knows that I have an amazing memory. I remember everything. I remember conversations from years ago in detail. (I've never been able to remember where I park at Walmart, though.) But now... now I seriously forget everything. Sometimes I'm not sure that I actually forgot the thing, or if I just never knew it in the first place.
* Insomnia, which this is partially related to the hot flashes. One minute I'm freezing. Full-on teeth-chattering freezing, and you can count to 10 and I'm burning up, sweating. Obviously, this constant back and forth keeps me awake a lot, having to cover up and then throw the covers back off again 4 minutes later. It's stupid.
I don't mind it though. I have been asking for menopause for years. Everyone older than me told me I wouldn't want it when I do get it, and now that it's here... you're wrong, I still want it, side effects and all, because this is better than what my body has been through up to this point. I haven't had a period since I was in radiation. I've skipped 3 periods so far. I should actually be on my period right now, according to the period tracker app I have on my phone. I haven't convinced myself to delete it yet. My doctor put me on hormone pills 3 weeks ago to help with the symptoms I've been experiencing, and while they helped my night sweats, hot flashes/chills, and mood swings a little, I did some research two days ago and saw that the Estradiol she gave me specifically says not to use if you've had cancer of the cervix and other things) and I realize that she knows what she's doing, but I also saw that it causes weight gain and more importantly, increases the risk of ovarian and uterine cancer. Needless to say, I stopped taking it. I'd rather deal with the crazy moods and body temp issues than increase my chances at more cancer. #nothankyou
:: WARNING - it's about to get pretty personal. ::
I also noticed that, about a week after starting the hormone pills, I got some watery discharge. And by some I mean a lot. A pantyliner wasn't cutting it anymore. I bumped up to a pad, an then progressed to having to change the pad a couple times a day. I was beginning to think I was peeing myself and not knowing it. I mean, it makes sense because remember for the brachytherapy, they were putting catheters in and out of me every visit, s I figured maybe that could cause some issues that could cause me to have urine leakage. Do you know what that's like?? I mean, I still have diarrhea DAILY thanks to radiation's effects on my bowels and intestines. So to add accidental peeing to the list is just like, come on now... It's confusing because it didn't smell like pee, and it wasn't the color of pee. It's just clear and watery. So anyway, I did a tampon test. I put a tampon in and decided that if I still experienced the leakage, then I'd know I was leaking pee. (Ew.) So I popped one in and went on about my day. A few hours later, I was still DRY so no pee, woohoo. Time to take the tampon out. Except, it won't come out... It hurt. Like, bad. Y'all have read the things I've been through recently. All the biopsies, the catheters, the rods going in my vag, all the very painful things that I got though... but this really hurt. I had to take a deep breath, grit my teeth, and pull it out. You'd think I'd never worn a tampon before! I don't know what the deal was, but I was glad it was out and that I'd confirmed that I wasn't peeing myself accidentally. 😀
Fast forward to two days ago (Wednesday.) I went in for my last immunotherapy treatment and as usual, had to see the doctor beforehand to discuss any issues I'd been having. Dr. Scalici was doing surgery on someone, so I saw one of her partners, Dr. Jones. He was super nice and super gentle when examining me. He said he saw some normal discharge in there, but not the watery stuff I was describing. Hmm. I told him about the tampon test, which he said was really smart thinking. He thinks I have a fissure, and I have to get tested to find out for sure. Basically, a fissure is a tear and he thinks that I have one at the bottom of my bladder that's causing small amounts of urine to leak into my vagina and come out that way - hence the watery discharge. So basically I was right AND wrong, because if this is the case, it means I am leaking pee, just not from my pee hole. So now I'm scheduled to go in at 7:30 Monday morning to have a CT scan where they inject dye into my bladder to see where it goes, if there is indeed a fissure, and identify the exact location of it. I swear, if it's not one thing, it's another. I asked him is I could just take some Azo and see that way, because Azo turns your pee bright orange and if it's leaking into my vag and coming out there, then it'll be on the tampon. I wish you could've seen his face when I asked that. He said it was genius.
I will say that yesterday, I did perform my Azo test, but results were inconclusive for reasons I won't get into, except to say that there was orange on the tampon, but not in the place you'd think it would be, so we were confused. We, as in me and Kris. He's the best. You know, when you meet an awesome man and fall in love, you plan your life and you make the "for better or worse" vows but you never really expect the worse part to happen. But he stayed though it all, right by my side, and yesterday, he stood right there and physically analyzed this used tampon with me. Then we took new/clean tampons and performed experiments with them to try to recreate the liquid flow that my body creates. We used Listerine since it's colored and it as right there. We didn't learn anything from our experiment, but I will say that was the freshest-smelling tampon ever. So now we just wait until Monday and find out what in the world is going on. Personally I am just hoping it's a side effect of the hormone pills since I didn't have this discharge until *after* I started taking them, and I'll know soon since I quit taking them. I'm really hoping it's NOT a fissure like the doctor thinks, because in his words - "it's not something that is easily corrected." Surgery would be required. I'm trying not to think much about that right now, since I really don't think that's the case.
Soooooo, that's where we are now.
Wednesday, March 21, 2018
I've been slacking
I've been slacking at posting updates. I've been feeling normal for the most part, so I've been trying to get back to my normal life. Honestly though, I don't know what that is after everything has happened. You know how when you're planning a wedding, it consumes so much time. Every single day, you are dealing with wedding things and then the wedding comes and you're so happy and excited, but the next day, it's over and you're just like, "what do I do now?" because your life has been consumed by it and now it’s done. That's how it was for me, basically. Every single day I had radiation, Tuesdays was chemo, Mondays was labwork, then there were extra appointments for biopsies, rehydration fluids and nausea meds, blood transfusion, and other misc appointments. And then I was done, and there were none. Well, just the treatments for the trial but that's only once every 3 weeks. So what do I do with those three weeks in between?
My older daughter Kylie made the soccer team at school, so that takes up a lot of time. She has practice every day during the week and games 1-3 times a week. Example, she had one Monday, she has one today (Weds.) and then she has two on Saturday. So every day, it’s a mad dash to get Kollin off the bus and then either go pick Kylie up from practice, or get to her games. Then afterwards, come home and get dinner done and all the kids bathed and in bed. And somewhere in there, homework happens. I thought after all of treatments were over, I'd get a break from the daily shit-to-do list but who was I kidding? The shit just changed from mine to someone else's, as usual.
A few weeks ago, I participated in the Colors of Cancer 5K Glow Run. I walked though, I don’t think I could have ran if I tried.I barely made it to the end just walking, because I sure was tired, but I did make it. I was lucky enough to have a handful of friends join me. I don't know if they did it for the fun of it (it was at night, and they gave us glow necklaces and stuff) or for moral support, or both. Either way, I was happy they were there. Kris left work early to come join me as well. I swear guys, I struck gold with that man. He has been there for me 100% through everything. Last week, I got sick. I'm not sure if it was something I ate or a virus, but it was nasty. I woke up with shooting stomach pains, and ended up sitting on the toilet with the waterbutts while puking into my trash can. He was on night shift that day so he slept through a good bit of it, but when he woke up and realized I was sick, he got so nervous and wanted to call in to work. I didn't let him. There was no point. He couldn't do anything and I'd already planned to just take a phenergan and go to bed as soon as all the kids went to bed. My stomach was still wonky for a couple days, but that's the only day I threw up.
Other than that and her soccer, I've been trying to get back to my normal day-to-day stuff as much as my energy allows. I've done some yard work, painted Zoey's bedroom, painted my friend's kitchen, dining room, and laundry room. I went yesterday and had my hair done for the first time since November. I have been taking Biotin vitamin gummies religiously, as well as a multivitamin, so my hair isn't quite as thin as it was and we decided it was okay enough to mess with at this point. It made me feel a little refreshed, and I needed that.
I haven't gained any weight back since doing treatments. I was 156 lbs when I went to see the oncologist for the first time, and my weight was 144 lbs the other day when I got on the scale. Obviously, I am not mad at that! (#chemodiet)
Seriously though, the after-effects of chemo are crazy, and there are things I still can't eat. For example, hot dogs. Y'all, I LOVE hot dogs. But I can't stand the thought of eating a hot dog right now. I can make them for the kids, but I just can't do it myself. That makes me sad and I hope it passes before summer gets here, because one of my favorite things is swimming in the pool and eating grilled hot dogs. My sense of smell comes and goes too, which is odd, but whatever. I don't care as much about that as I do my beloved hot dogs!
I still haven't had any side effects from this Pembrolizumad (aka Keytruda) that I'm getting for the trial. My last treatment for that is actually this coming Tuesday. I'll go in for my bloodwork the day before, as usual. I'm hoping my red and white blood cell counts are back in the normal range. Last time, they were still low, but they were on the higher end of the low range, so I'm hopeful they'll be back to normal now.
My older daughter Kylie made the soccer team at school, so that takes up a lot of time. She has practice every day during the week and games 1-3 times a week. Example, she had one Monday, she has one today (Weds.) and then she has two on Saturday. So every day, it’s a mad dash to get Kollin off the bus and then either go pick Kylie up from practice, or get to her games. Then afterwards, come home and get dinner done and all the kids bathed and in bed. And somewhere in there, homework happens. I thought after all of treatments were over, I'd get a break from the daily shit-to-do list but who was I kidding? The shit just changed from mine to someone else's, as usual.
A few weeks ago, I participated in the Colors of Cancer 5K Glow Run. I walked though, I don’t think I could have ran if I tried.I barely made it to the end just walking, because I sure was tired, but I did make it. I was lucky enough to have a handful of friends join me. I don't know if they did it for the fun of it (it was at night, and they gave us glow necklaces and stuff) or for moral support, or both. Either way, I was happy they were there. Kris left work early to come join me as well. I swear guys, I struck gold with that man. He has been there for me 100% through everything. Last week, I got sick. I'm not sure if it was something I ate or a virus, but it was nasty. I woke up with shooting stomach pains, and ended up sitting on the toilet with the waterbutts while puking into my trash can. He was on night shift that day so he slept through a good bit of it, but when he woke up and realized I was sick, he got so nervous and wanted to call in to work. I didn't let him. There was no point. He couldn't do anything and I'd already planned to just take a phenergan and go to bed as soon as all the kids went to bed. My stomach was still wonky for a couple days, but that's the only day I threw up.
Other than that and her soccer, I've been trying to get back to my normal day-to-day stuff as much as my energy allows. I've done some yard work, painted Zoey's bedroom, painted my friend's kitchen, dining room, and laundry room. I went yesterday and had my hair done for the first time since November. I have been taking Biotin vitamin gummies religiously, as well as a multivitamin, so my hair isn't quite as thin as it was and we decided it was okay enough to mess with at this point. It made me feel a little refreshed, and I needed that.
I haven't gained any weight back since doing treatments. I was 156 lbs when I went to see the oncologist for the first time, and my weight was 144 lbs the other day when I got on the scale. Obviously, I am not mad at that! (#chemodiet)
Seriously though, the after-effects of chemo are crazy, and there are things I still can't eat. For example, hot dogs. Y'all, I LOVE hot dogs. But I can't stand the thought of eating a hot dog right now. I can make them for the kids, but I just can't do it myself. That makes me sad and I hope it passes before summer gets here, because one of my favorite things is swimming in the pool and eating grilled hot dogs. My sense of smell comes and goes too, which is odd, but whatever. I don't care as much about that as I do my beloved hot dogs!
I still haven't had any side effects from this Pembrolizumad (aka Keytruda) that I'm getting for the trial. My last treatment for that is actually this coming Tuesday. I'll go in for my bloodwork the day before, as usual. I'm hoping my red and white blood cell counts are back in the normal range. Last time, they were still low, but they were on the higher end of the low range, so I'm hopeful they'll be back to normal now.
Tuesday, February 27, 2018
Immunotherapy
It's been a couple of weeks since my last update, so I figured now would be a good time to sit down and write another one.
I had labs/blood work done on the 14th, which showed that my white blood cell count was still very low, as well as my red blood cell count, so I was told to basically continue to avoid all contact with anyone who has been sick recently. Considering this is the season for flu and strep and everyone has been sick, I should stay quarantined to avoid getting sick myself. My platelet count had also dropped a little bit, again, but was at the borderline for regular and low, so that wasn't concerning. I had my first of three immunotherapy treatments for the clinical trial on the 15th, which was 12 days ago. I received Pembrolizumab, aka Keytruda. This drug is already used to help in the treatment of cancers in the upper body, such as head and neck cancer, lung cancer, lymphoma, and melanoma. The purpose of the trial I'm participating in is to see if it can also help with cancers in other parts of the body. Chemo is used to slow the growth and destroy rapidly-dividing cancer cells in the body. The downside is, we also have rapidly-dividing cells in our body that are good, but the chemo can't distinguish between the two so it attacks all of them. That's why I got so sick, why my blood cell and platelet counts dropped so low, and I had to have the blood transfusion. But Pembro/Keytruda only goes after the cancerous cells, and also prevents them from hiding. I am incredibly lucky to be part of this trial to get this drug because it's extremely expensive and insurance doesn't cover it.
It was given to me through an IV in my arm, and took only 30 minutes. I did get some saline fluids beforehand, but that took even less time. They said there wouldn't be many side effects of this drug. Most common ones were joint pains, muscle pains, coughing, wheezing, general symptoms of an upper respiratory infection. I am happy to report that I've had none of those symptoms, for the most part. That first week after the treatment, I did have something - not sure how to explain it, except for like this: you know how when you work out or be very active and your muscles are tight-feeling the next morning, and you have to stretch them a lot? I had that feeling for the first week. It wasn't painful or even sore feeling, just basically a tightness feeling. I also had a sore throat for a week but that was due to pollen. If you're local in Alabama, then you know exactly what I'm talking about.
I'm no longer quarantining myself either, by default. My daughter made the soccer team at school, and due to practice EVERY SINGLE DAY after school, plus games, there's no way I could avoid human contact. Even if I'd wanted to, my two younger kids both ran fevers for days and with my husband working, I had no choice but to be around them. Zoey likes to stay right on top of me even when she's not sick, so avoiding her wasn't happening. Kollin, on top of his fever, also had diarrhea and vomiting. I thought maybe he had the flu, but a trip to Urgent Care proved otherwise. Point is, I made it through both of their sicknesses and didn't get sick myself, so I declared this QUARANTINE OVER.
I personally feel great. Every side effect I had from chemo is gone, except for my super thin hair, but I've started taking Biotin to help with that. I no longer have any side effects from radiation either, which was mainly just diarrhea and fatigue. I have my energy back and I feel like my old self again, for the most part. My brain and my body aren't on the same page - I don't quite have all my strength back yet, so when I try to do things (for example, yardwork with Kris last week) I tire out faster. That's okay though, it'll come. I'll get there again. I'm just glad to be able to do what I can now.
I go back for my next treatment on March 6th, but I'll have my labs/blood work done the day before. I'm curious and excited to see how my both of my blood cell & platelet counts are by then. As soon as they are all back up to normal range again, I am having my cancer ribbon tattoo retouched. I had it done two days after I was diagnosed, and since it is on the top of my foot, she couldn't do it deep and some of the color faded as it healed. I want to have it redone and have it healed up before swimming time!
In the meantime, it's so nice being out of the house again! I've done some yard work with my husband, went to Kylie's soccer games, painted Zoey's bedroom pink (she's only been asking for over a year), went to a birthday dinner for my friend Holli, and this coming weekend I am doing the Colors of Cancer Glow Run 5K. I won't be running, of course. I'll be walking, but it will be fun and I am looking forward to it. This will be my first 5K in the dark and all the glowing things are just a bonus. A few friends have signed up to do it with me, so I'm thankful for them for doing that. It will be fun to get out and do something. I'm a little desperate for a date night, seeing how the last one was November 3rd, the night I got the above-mentioned cancer ribbon tattoo. I realize that was only a few months ago, but so much has happened since then, that it feels like years ago. The only alone time Kris and I have had since then was going to chemo or radiation,but that's hardly a date, and definitely not romantic - but I wouldn't undo it for anything. I don't know what I would have done without him there with me every step of the way. He's the best, period.
I had labs/blood work done on the 14th, which showed that my white blood cell count was still very low, as well as my red blood cell count, so I was told to basically continue to avoid all contact with anyone who has been sick recently. Considering this is the season for flu and strep and everyone has been sick, I should stay quarantined to avoid getting sick myself. My platelet count had also dropped a little bit, again, but was at the borderline for regular and low, so that wasn't concerning. I had my first of three immunotherapy treatments for the clinical trial on the 15th, which was 12 days ago. I received Pembrolizumab, aka Keytruda. This drug is already used to help in the treatment of cancers in the upper body, such as head and neck cancer, lung cancer, lymphoma, and melanoma. The purpose of the trial I'm participating in is to see if it can also help with cancers in other parts of the body. Chemo is used to slow the growth and destroy rapidly-dividing cancer cells in the body. The downside is, we also have rapidly-dividing cells in our body that are good, but the chemo can't distinguish between the two so it attacks all of them. That's why I got so sick, why my blood cell and platelet counts dropped so low, and I had to have the blood transfusion. But Pembro/Keytruda only goes after the cancerous cells, and also prevents them from hiding. I am incredibly lucky to be part of this trial to get this drug because it's extremely expensive and insurance doesn't cover it.
It was given to me through an IV in my arm, and took only 30 minutes. I did get some saline fluids beforehand, but that took even less time. They said there wouldn't be many side effects of this drug. Most common ones were joint pains, muscle pains, coughing, wheezing, general symptoms of an upper respiratory infection. I am happy to report that I've had none of those symptoms, for the most part. That first week after the treatment, I did have something - not sure how to explain it, except for like this: you know how when you work out or be very active and your muscles are tight-feeling the next morning, and you have to stretch them a lot? I had that feeling for the first week. It wasn't painful or even sore feeling, just basically a tightness feeling. I also had a sore throat for a week but that was due to pollen. If you're local in Alabama, then you know exactly what I'm talking about.
I'm no longer quarantining myself either, by default. My daughter made the soccer team at school, and due to practice EVERY SINGLE DAY after school, plus games, there's no way I could avoid human contact. Even if I'd wanted to, my two younger kids both ran fevers for days and with my husband working, I had no choice but to be around them. Zoey likes to stay right on top of me even when she's not sick, so avoiding her wasn't happening. Kollin, on top of his fever, also had diarrhea and vomiting. I thought maybe he had the flu, but a trip to Urgent Care proved otherwise. Point is, I made it through both of their sicknesses and didn't get sick myself, so I declared this QUARANTINE OVER.
I personally feel great. Every side effect I had from chemo is gone, except for my super thin hair, but I've started taking Biotin to help with that. I no longer have any side effects from radiation either, which was mainly just diarrhea and fatigue. I have my energy back and I feel like my old self again, for the most part. My brain and my body aren't on the same page - I don't quite have all my strength back yet, so when I try to do things (for example, yardwork with Kris last week) I tire out faster. That's okay though, it'll come. I'll get there again. I'm just glad to be able to do what I can now.
I go back for my next treatment on March 6th, but I'll have my labs/blood work done the day before. I'm curious and excited to see how my both of my blood cell & platelet counts are by then. As soon as they are all back up to normal range again, I am having my cancer ribbon tattoo retouched. I had it done two days after I was diagnosed, and since it is on the top of my foot, she couldn't do it deep and some of the color faded as it healed. I want to have it redone and have it healed up before swimming time!
In the meantime, it's so nice being out of the house again! I've done some yard work with my husband, went to Kylie's soccer games, painted Zoey's bedroom pink (she's only been asking for over a year), went to a birthday dinner for my friend Holli, and this coming weekend I am doing the Colors of Cancer Glow Run 5K. I won't be running, of course. I'll be walking, but it will be fun and I am looking forward to it. This will be my first 5K in the dark and all the glowing things are just a bonus. A few friends have signed up to do it with me, so I'm thankful for them for doing that. It will be fun to get out and do something. I'm a little desperate for a date night, seeing how the last one was November 3rd, the night I got the above-mentioned cancer ribbon tattoo. I realize that was only a few months ago, but so much has happened since then, that it feels like years ago. The only alone time Kris and I have had since then was going to chemo or radiation,but that's hardly a date, and definitely not romantic - but I wouldn't undo it for anything. I don't know what I would have done without him there with me every step of the way. He's the best, period.
Friday, February 9, 2018
BELL RINGING!
So I went in for brachytherapy and took all the radiation staff some goodies. I made some cupcakes and I made some teal cancer ribbons out of fondant to go on top of them. I also made some chocolate covered apple slices, and then just threw a bunch of other goodies in a bag because I ran out of time to do the rest of what I had planned. I bought some thank you cards and wrote them some personal notes and gave them out. I wish I would have taken pictures, but I didn't have time.
Turns out, it was my last Brachytherapy session! I don’t have to have the last one on Monday because my body responded so well. This session took a little longer than normal because they had a medical student come in and so they were talking about the whole process and showing him everything & explaining what they were doing (and why) as they did it. He’s the one you’ll see in the group photo. Yep, I told him to jump on in the pic with us. Anyway, my treatment itself was longer too since it was my last one, and then when it was over, Dr. Outlaw went up in my vag to cut the stitches and remove my Smit Sleeve. Apparently I’ve been spelling it wrong. When she told him what it was called, he repeated it and she said yep, Smit, S-M-I-T. Like Smith without the H. Dang it! I’m not going back and editing all the previous posts though.
I also asked Angel if they could tell me now exactly what stage the cancer was. If you recall, I had asked at the beginning and Dr. Scalici told me it was probably a 1B or 2A, but she couldn’t tell just yet for whatever reasons (I forgot) and I just never remembered to ask again. So Angel went and had Dr. Outlaw come tell me and show it to me on a diagram exactly where the tumor was and everything. Turns out it was a stage 2B cancer. How about that.
After that, we went out to the radiation lobby and got to ring the bell! Hardly anyone was there because it was after 4pm by then, and they leave early on Fridays. I tried to get Zoey to ring the bell with me, but she wouldn’t. I'm attaching photos. Please ignore the weird lumps in my hair. It’s super thin now because chemo caused a lot to fall out, so after laying flat on my back for hours for the treatment, it tends to look wonky. Also ignore how pale I am. Brachytherapy does that to me. My color is already back, mostly anyway. Zoey refused to be involved in any of the pics.
I’m happy my treatment is done, but I’m not happy to be done there. It's bittersweet. I've really come to love these people. I'm normal there. I'm not looked at all pitiful like I am by other people. I'm not 'the girl with cancer' when I'm there because everyone there has cancer. But I’ll be back there soon, as a volunteer in the radiation department, and I’m super excited about that part. That’s all the info I’m giving out about that. I don't want to jinx anything, plus it'll be tricky getting timing right as well as a sitter for Zoey. I'm sure by now everyone is tired of keeping her daily.
Turns out, it was my last Brachytherapy session! I don’t have to have the last one on Monday because my body responded so well. This session took a little longer than normal because they had a medical student come in and so they were talking about the whole process and showing him everything & explaining what they were doing (and why) as they did it. He’s the one you’ll see in the group photo. Yep, I told him to jump on in the pic with us. Anyway, my treatment itself was longer too since it was my last one, and then when it was over, Dr. Outlaw went up in my vag to cut the stitches and remove my Smit Sleeve. Apparently I’ve been spelling it wrong. When she told him what it was called, he repeated it and she said yep, Smit, S-M-I-T. Like Smith without the H. Dang it! I’m not going back and editing all the previous posts though.
I also asked Angel if they could tell me now exactly what stage the cancer was. If you recall, I had asked at the beginning and Dr. Scalici told me it was probably a 1B or 2A, but she couldn’t tell just yet for whatever reasons (I forgot) and I just never remembered to ask again. So Angel went and had Dr. Outlaw come tell me and show it to me on a diagram exactly where the tumor was and everything. Turns out it was a stage 2B cancer. How about that.
After that, we went out to the radiation lobby and got to ring the bell! Hardly anyone was there because it was after 4pm by then, and they leave early on Fridays. I tried to get Zoey to ring the bell with me, but she wouldn’t. I'm attaching photos. Please ignore the weird lumps in my hair. It’s super thin now because chemo caused a lot to fall out, so after laying flat on my back for hours for the treatment, it tends to look wonky. Also ignore how pale I am. Brachytherapy does that to me. My color is already back, mostly anyway. Zoey refused to be involved in any of the pics.
I’m happy my treatment is done, but I’m not happy to be done there. It's bittersweet. I've really come to love these people. I'm normal there. I'm not looked at all pitiful like I am by other people. I'm not 'the girl with cancer' when I'm there because everyone there has cancer. But I’ll be back there soon, as a volunteer in the radiation department, and I’m super excited about that part. That’s all the info I’m giving out about that. I don't want to jinx anything, plus it'll be tricky getting timing right as well as a sitter for Zoey. I'm sure by now everyone is tired of keeping her daily.
Tuesday, February 6, 2018
Brachytherapy #2
Brachytherapy/HDR number 2 went better than the first. It was still painful, but I guess just because I knew what to expect this time, it was easier to deal with. I took a new book to read this time while I waited the long time for the planning period. Apparently my nurses are all bookworms too, because they were all asking about the book and we all had a good laugh about it and the irony of it. In short, the book is about a woman who died from cancer and her husband keeps getting handwritten letters from her after she’s dead that apparently contain secrets about her that he never knew. I’ll attach pics of the back cover so you can read it for yourself.
Anyway, apparently we are passing this book around the nurses station when I finish it (which will be by tonight) and Brandy (another nurse) couldn’t wait, so she went and downloaded it as soon as she read the cover. I’m excited about that because I love discussing books.
I had labs done before brachytherapy to check all my levels. My platelets are fantastic now! Remember they had dropped down to 28, then dropped again to 25, so I had to do the blood transfusion and that got them up to 54. Yesterday, they were... drumroll.... 238!!! Does that tell you how horribly low they were? Yikes.
My white blood cell count, however, is still bad low. Normal range for someone in my position is 4.30-10. My count is 1.18. I asked her what that meant and she said, “It means you have no immune system right now. You can’t fight off infections or sickness and if you catch something, you’ll end up in the hospital.” So now I’m told not to go in public if necessary and if I do, then I must wear my medical mask and use GermX immediately after touching public doors, store buggies, etc. so I guess it’s a good thing I didn’t go to the ball or birthday party or my aunt’s event. I’m tired of being quarantined!
My first immunotherapy is next week on the 15th, so I have to go in on Valentines Day and get more blood work done for the trial.
When I’m done with brachytherapy, I plan to take some homemade goodies to all my nurses and doctors and some of the other staff members because seriously, they are the nicest people. And they saved my life. Yes, we are paying for those services, but these people go way above and beyond what is required of them. They all greet me by my name when I walk in, and treat me like family. There’s hugs at every single visit. Dottie and Raymond at the front door, they'll chase you down if you somehow manage to get past them without a hug. And then there's Joanie, my clinical trial worker. She has gone out of her way to check on me all the time. I see her at every visit, which obviously was a lot. She's been the one consistent person there through all of this. I am going to miss her, and everyone else, when it's all over.
Usually when cancer patient’s treatments are all over, they say they never want to see “that place” again. But this whole experience changed my life in more ways than one, and my treatments may be ending soon, but me going to that building won’t be ending. That’s all I’m saying for now. There’s still details that have to be worked out.
If any of you, whether I know you or not, have questions about ANYTHING, please feel free to ask. Seriously. No matter how personal, because clearly I have no problems sharing details. Want to know my symptoms, ask. I'm an open book.
Anyway, apparently we are passing this book around the nurses station when I finish it (which will be by tonight) and Brandy (another nurse) couldn’t wait, so she went and downloaded it as soon as she read the cover. I’m excited about that because I love discussing books.
I had labs done before brachytherapy to check all my levels. My platelets are fantastic now! Remember they had dropped down to 28, then dropped again to 25, so I had to do the blood transfusion and that got them up to 54. Yesterday, they were... drumroll.... 238!!! Does that tell you how horribly low they were? Yikes.
My white blood cell count, however, is still bad low. Normal range for someone in my position is 4.30-10. My count is 1.18. I asked her what that meant and she said, “It means you have no immune system right now. You can’t fight off infections or sickness and if you catch something, you’ll end up in the hospital.” So now I’m told not to go in public if necessary and if I do, then I must wear my medical mask and use GermX immediately after touching public doors, store buggies, etc. so I guess it’s a good thing I didn’t go to the ball or birthday party or my aunt’s event. I’m tired of being quarantined!
My first immunotherapy is next week on the 15th, so I have to go in on Valentines Day and get more blood work done for the trial.
When I’m done with brachytherapy, I plan to take some homemade goodies to all my nurses and doctors and some of the other staff members because seriously, they are the nicest people. And they saved my life. Yes, we are paying for those services, but these people go way above and beyond what is required of them. They all greet me by my name when I walk in, and treat me like family. There’s hugs at every single visit. Dottie and Raymond at the front door, they'll chase you down if you somehow manage to get past them without a hug. And then there's Joanie, my clinical trial worker. She has gone out of her way to check on me all the time. I see her at every visit, which obviously was a lot. She's been the one consistent person there through all of this. I am going to miss her, and everyone else, when it's all over.
Usually when cancer patient’s treatments are all over, they say they never want to see “that place” again. But this whole experience changed my life in more ways than one, and my treatments may be ending soon, but me going to that building won’t be ending. That’s all I’m saying for now. There’s still details that have to be worked out.
If any of you, whether I know you or not, have questions about ANYTHING, please feel free to ask. Seriously. No matter how personal, because clearly I have no problems sharing details. Want to know my symptoms, ask. I'm an open book.
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