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.

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.

Brachytherapy has begun.

I started Brachytherapy this past Friday. In case you're just joining in on the blog, brachytherapy is also called HDR, which stands for High Dose Radiation. It's done internally. This is how the first one went for me...

Unlike the external radiation, there was no Gas-X to take and no excessive amount of water to drink before each session. Instead, one hour before my appointment time, I have to take two pills: one is Dilaudid, which is for pain. The other is Valium, which is to make me relaxed and calm. When I got there, I got brought into the room to remove my clothes from the waist down & put on a gown. I was told to leave my socks on since the room is cold. Then I'm taken into the procedure room. I lay on a very narrow bed and my legs go up into stirrups. Not typical stirrups where your ankles sit in the little cup thing - nope, it's a long one. Everything from my knees to my feet go into the stirrups, and then they velcro a few straps over each leg. Then Angel (my nurse) tilts this table to where my butt is up in the air and my head is tilted down toward the ground, and then inserts a catheter into my peehole. This was not pleasant. It hurt quite a bit. I've never had a catheter put in when I was awake. She did put something on there beforehand to somewhat numb it, but it didn't help much. Anyway, one the catheter is in, she inflates some balloon up inside me to push my bladder away from the area that will be treated. After that, Dr. Outlaw comes in and inserts several metal rods into my smitt sleeve (the plastic tube they sewed into my vagina) to see which one is going to work the best for what needs to be done. This is also pretty painful, as you can imagine it would be. I mean, metal rods being put in and out of you, being tilted and shifted in different angles, it hurts. Once she found the one she wanted to use, Dr. Outlaw takes what felt like 40 yards of gauze (which is soaked in saline and KY Jelly for comfort) and packs it up into my vag. This is by far THE MOST PAINFUL PART. So as of that moment in time, I have a catheter, a balloon, a plastic tube, and metal rods inside me already. Now she's adding gauze. And the more she adds, the more painfully aware you become of all those things inside you. Everything hurts. It's taking everything in me to be still and not to move, and thankfully Vickie, the radiation tech, is up by my shoulders giving me pep talks and just talking to me about random things, trying to keep my mind off the process. She says just pretend I'm a turkey being stuffed for Thanksgiving, to which I immediately replied "Turkeys are dead!" They laughed, and then I did, and at least for a moment I wasn't thinking of the pain. But for real, OUCH. You think there's no possible way anything else is going to fit in there and she proves you wrong. Yall, I was never a slutty girl, my vag is not loose enough nor equipped to handle this type of load. Gah. Finally that's over, and then Angel pushes several big syringes of saline into the catheter to fill my bladder to max capacity. Then they very gently take my legs out of the stirrups and prop them up under a couple of pillows on the table. I get covered up with a few sheets, and then they tilt the table back flat and wheel my bed out into the hallway and down a million hallways. We end up in the room for a CT scan to make sure the placements of the rods (and everything else inside there) is exactly here it needs to be. Then we go back to the procedure room I was in and the waiting begins while they plan my treatment doses. This is serious business and takes a long time. This session took an hour and a half of waiting, which honestly I didn't mind. The only thing is you can not move! You have to lay there with the rod poking out of your vag and all that gauze and the full bladder and be as still as you possibly can. They turned on some music for me and Angel sat in there and talked to me for the majority of the time. I told her she didn't have to, but she said she had nothing else to do but paperwork and it could wait. We talked about lots of things and I enjoyed our conversations very much. I wish I could share them, but I am going to wait on that for now, but I'm super excited about some future plans! The other nurse came in for a bit and talked too, but she mostly stayed out there and did her paperwork while we waited. Finally, a man doctor comes into the room with some rolling machine. He hooks some wires from the machine to the thing in the closet, then some more wires from the machine to the rod sticking out of my vag. Dr. Outlaw says "It's showtime, see you in 184 seconds!" Wait what, that's only 3 minutes! Yes, the actual radiation part is 3 minutes. And I could feel it pulsing inside me. That part didn't hurt, just felt weird. When it was over, he came back into the room, unhooked the wires from my cooter-rod, then unhooked the other wire from the closet thing and left. Dr. Outlaw and the nurses come back in and she removes the gauze from in there. It felt... I don't know. In between uncomfortable and painful. She just kept pulling and pulling. You know the clown trick where they pull the colorful ribbon rope from his sleeve or hat and it just keeps coming and coming? That's what I pictured while it was happening. After that, she removed the rod and then Angel drained the saline from my bladder, and then removed the catheter. Again, OUCH. Although it wasn't as bad coming out as it as going in. After all of this, I am done. I get dressed and they rave about how great of a patient I was, how I must have a high pain threshold. I don't feel that way, because that shit hurt pretty bad... but they said if I saw how everyone else acted, I'd be amazed as how well I did. Hmm.

Overall, it was a long session. Started at 11, done at 3. Mercy. Only 4 more of these to go. Yay.
But then, I am done with it and all I'll have left is Immunotherapy for the trial.

Side effects from brachytherapy: Pain, obviously. Bleeding. Pain. Cramping. Pain. Soreness in the whole downstairs area. But considering everything they did, that's all to be expected.

As a result, everything we were supposed to do this weekend, I didn't do any of it. We were going to go to the St. Jude Joy of Life Ball last night, which I was really looking forward to because not only does the money go to St. Jude to help children with cancer, the band playing at the ball was Fly By Radio. First of all, I love them. Second of all, it seemed soo fitting that I'd see them at the end of my cancer journey because in a way, it started with them too. No, the band didn't give me cancer. But the night we went to see the play for my birthday back in September is the same night my symptoms got so bad that I knew it was time to call the doctor. So since they were at the beginning of it all, it was going to feel a little symbolic and awesome to me to see them at the end of it. But like I said, I didn't get to go. However -- my friend Erinn, who is on the committee of the ball, surprised me with a video clip of her and the band giving me a personal get well message and blowing me kisses. Kris saw it before I did and of course I got teary-eyed. It meant so much that she went out of her way to do that, and that they took time to actually do it. We also had a birthday party for a friend's twin boys and another event at my aunt's house and I just didn't go to any of them. I hope everyone understands. It's almost over y'all, just bear with me.

So anyway, that's the update on that. I get to go back this week and do it all again on Monday, Wednesday, and Friday. But they said these won't be as bad as the first one. The first one is always the worst, they said. And at least now I know what to expect.

Second update this week!

I usually only do updates once a week, but this week called for another one!

As you know, Kelly took my picc line out Tuesday and the doctor gave me antibiotics for the swelling and skin issues. It’s a good thing, because it was indeed infected. It got super red and a rash went down my whole arm and the red area around it got really warm to the touch. Today, the warmth is gone and the rest is looking better, but there's a huge knot where the hole in my arm is, where the tube/line went into my arm.

Wednesday, I went in for radiation as usual, and when I finished, they all came into the room and gave me a certificate of completion and told me I was done! I was confused because I have another week of it to do, but they said since the tumor was responding so well to the treatment and the exam showed it was 75% smaller, that Dr. Outlaw decided I didn’t have to do the last week because the Brachytherapy will knock it on out. Debbie said I could ring the bell, but Kris wasn’t with me so I didn’t do it. I decided to wait until I finish Brachytherapy and then do it. I want him to be there with me when I do it because he’s just as much a part of it as I am and without him, I couldn’t have done it.

Thursday (yesterday) I had to do the blood transfusion. I got two bags of blood. It was weird mentally, watching blood go into my body and know that it isn’t even mine. I mean, it is now, but you know. Physically, no, I couldn’t feel it going into my body. Kris kept cracking vampire jokes. I sure do love him. He will never understand how much, or how thankful I am that he's been with me through every step of the way.

Everyone keeps asking if it made me feel better. That’s a hard question to answer because I didn’t feel really bad before I got it. Just weak and real pale. Afterwards, I slept for a while (thanks Benadryl!) and when I woke up, I definitely didn’t feel as weak and I had color to my face again. I don’t get exhausted doing simple things now, like throwing laundry into the dryer. I guess I didn't realize how weak I was because I'd gotten so used to it, and didn't know how weak I truly was until I wasn't weak anymore. So the answer is yes, I do feel better. I'm incredibly thankful for the people who selflessly donate blood. I will definitely be paying it forward, if I'm allowed to donate. I don't know how it works. I'll have to ask.

My stomach still feels wonky now and then, and I still get nauseated quite a bit. Definitely right now at this moment. I wish I could pinpoint what causes it to feel gross but I can’t. It’s completely random. I do know the smell of hot dogs makes me sick. That's sad because I love hot dogs.

I go in Monday morning at 5:30 to have my platelets checked again, and if they’re at an acceptable level for surgery, then we’ll go on and do the biopsy and put in the Smitt Sleeve. If they’re still too low, we’ll just have to reschedule, again. Kris is on night shift that day, so he will be with me. He’s worried about me being alone and in pain that night, but I’ll manage.

What a day.

Here’s an update for those following my kicking-cancer’s-ass journey: I went in for blood work today to check my platelets. They didn’t go up. They went down. My platelet count is now 25,000 so now I’m scheduled for a blood transfusion Thursday morning. My hemoglobin count is also very low.

Even with the low platelet count, they had to take a risk & remove the picc line from my arm because it was very red & swollen, and the skin was severely cracked and blistered and really hurt. Kelly (in the lab) is a fucking rockstar. They didn't want it removed yet because I was running a slight fever yesterday so they were afraid it was becoming infected. She had tried to get them t take it out last week since they said no more chemo, but they said no. But she fought tooth and nail for me today, and won this time. So now the picc line is gone and I just picked up antibiotics for it. I can't wait to be able to take a shower without a sleeve again. To feel the shampoo in my hair. To feel my hands in general!

Dr. Scalici did an exam on me today and said the tumor felt 75% smaller than when we started, so that’s awesome news! Now we just hope I can hang in there and outlive the tumor. #diebarbdie

Besides this, I’ve been doing very well since they stopped my chemo. As of today, I’ve been chemo-free for two weeks and for the most part, I feel so much better. I’m still doing radiation every day, and as long as my issues don’t cause me to miss any sessions, I will be done with external radiation a week from tomorrow!
Then starting next Friday, I’ll have 5 sessions of the internal radiation, called Brachytherapy. I was supposed to have the surgery tomorrow for them to put in the Smitt Sleeve, but they cancelled it due to the platelet count. It’s being rescheduled for Monday, I believe, in hopes that my counts are up enough by then. Tomorrow I have to go to radiation and then to the hospital to do labwork for the transfusion.

I haven’t been sick really since chemo. I have a little more energy. I no longer have the metal taste in my mouth, so I can use normal forks and spoons again. I can eat normal, but bland, foods again, but not quite whatever I want. My tummy isn’t ready for that. I can drink Dr. Pepper again! I could technically have a margarita or other drink if I wanted, but I’m not ready for that yet either. I want to wait until I finish everything and my stomach is normal again. Even the Dr. Pepper, I don't have much of. I've gone months without it, I can continue to survive without it. Best part is, I've been able to drive myself so that's a huge help!

Current side effects are still pain when I pee, diarrhea, occasional nausea, dizzy spells, and I lose energy quick if I try to do too much. This is all from radiation, so it’ll go away when I finish. I’m really pale right now but that’s due to the platelets. She said my color will come back after the transfusion and I’ll feel good again. Crazy thing is, I really don’t feel terribly bad right now. I did get real sick Monday night. Like stomach pains and then I threw up all over the bathroom, but I am almost positive that it was what I ate because I felt fantastic before I ate and almost immediately felt bad afterwards. Oh well. I was fine after I threw up.

So that’s what’s up right now. I’m hanging in there and keep telling myself it’s almost over and that’s about all I can do. I’m kinda bummed about going alone tomorrow. I'm worried that I may get dizzy after they draw more blood, but if that happens, I’ll just call someone or sit and wait til I feel better. I’m not doing anything to put myself in danger, don’t worry guys! Edit to update: my uncle Dewayne is coming to drive me to my appointments.

Surgery went well!

Monday I had to go to the hospital for surgery, but I had to get my blood work done first to check my platelets before we could proceed. They had come up from a 25,000 to a 54,000 (which is still low, but better) so we got the green light. They also said my white blood cell count was low, but I don’t know what the numbers were for that.

I was given anesthesia and wheeled off. I recall them telling Kris to go through a door to the right and wait there as they were pushing my bed down the hall, and then I was awake in some other room and he was beside me. It was all over. I was feeling some pretty intense cramping and soreness down there, so they gave me some morphine in my IV.
Yall.... I don’t do heavy meds or painkillers. I just don’t. So when I do, things get crazy. Kris has a video clip of me talking about the door situation and then I decided I was ET when I saw the glowing thing on my finger. I recall telling a nurse she was very pretty (he said she actually wasn’t at all, but I guess that makes it even nicer because I probably made her day.) I told him - loudly - to look at the other nurse’s butt, the one in the green pants, because she has (and I quote) a big ol’ booty. I made some people go hunt down this lady who works in the lab or something because she called me three times in a row the day I got my blood transfusion and I was trying to sleep, and she just kept talking and calling back knowing I was sleeping. So I just wanted to meet her in person so I’d know who she was. She walked up and I said “Kim, 3-4513!” That’s her phone line extension number, don’t ask how I remembered that in the state I was in, or why I felt like telling her because obviously she knows her name and number. Me on meds is kinda like being drunk. You’re aware of what you’re saying and doing, but it’s like your brain is on autopilot. I look back and I’m like oh gahhh, why did I say that? But it was funny. At least the video clip part was.

As for the surgery, first they did a biopsy for the clinical trial I’m participating in. Then after that, they installed the Smitt Sleeve, which is a small plastic tube that goes in my vagina to hold the rods in place for the internal radiation (aka Brachytherapy.) The tube was sewn in there and it stays in me until we finish Brachytherapy on Feb.12th. They said I wouldn’t be able to feel it, but I do. I cramped for about 24 hours after the surgery, but it’s not painful otherwise. When I move in certain positions, I can feel it kinda pinch in there. It caused some light bleeding, which I still have, but nothing major. I’m used to bleeding anyway.

Kris said Dr. Scalici told him she didn’t see any of the tumor left, and that they basically had to cut a chunk of my flesh where the tumor *was* for the biopsy. This is good news. I wish I’d have been awake to hear it. I’m trying not to get too excited just yet though. Not until treatments are ALL over and we do more scans to make sure the cancer hasn’t moved somewhere else. I want to be optimistic and say that won’t happen, but it can, and does, happen to people all the time. So for now, I’m just hoping for the best.

I start Brachytherapy on Friday. Two days from now. I’m nervous, and slightly terrified. I don’t know what to expect. Angel (Dr. Outlaw's nurse, who I just adore)said it's not as bad as what I read about. We'll see. I don’t know how long this will take. I am scared of what the side effects will be. The thought of laying on my back with my legs in stirrups and having to be super still for hours while metal rods are in my lady-basement is not something that was ever on my bucket list. I ordered a book from amazon to take and read while I wait in awkwardness. Getting lost in someone else’s world usually helps me forget about mine for a while.
Anyway, that’s all I’ve got for now. I feel like I am forgetting something, but if I am, I’ll just add it to the next update. It’s late and I’m tired.

Heyyyy youuu guyyyyysss....

Today is Tuesday, chemo day. I felt pretty decent this morning which is one of life's cruel jokes lately. Like it's saying Hey, let's have her wake up feeling great so that it'll suck extra bad later when she feels like chewed up shit. That sounds fun, right? Anyway... Kris decided we should take a picture together, so we did before we left.

I walked in doing a little shimmy and had Shanika (our favorite receptionist) laughing because I was dancing. She’s seen my worst days, and always helped me get into the infusion room fast when I was super sick and needing fluids and nausea meds. She liked that I was feeling good. It's possibly because I had a patch that Erin ( one of my nurses) gave me to try to help with the sickness since I seem to keep getting worse and worse each time. She said it's a miracle drug, and if it works, we'll figure out a way to get more, but they're crazy expensive : $600 per patch and insurance doesn't cover them.

Bad news: labwork said my platelets were dangerously low today. They were a 28. Last week they were 76, before that, they were 100. (Thousand) If you’re like me and didn’t know what that meant, it’s not a good thing. It means if I bleed, it won’t clot. I’ll basically bleed to death. So now I’ve got a list of things I’m not allowed to do: I can’t shave with a normal razor, it has to be electric so I don’t cut myself. Can’t use knives or scissors or anything sharp. Certain products I’m not allowed to use, like toothpaste with tartar control. I can’t floss in case it causes my gums to bleed. Had to buy an ultra soft toothbrush so again, my gums don’t bleed. Certain foods I can’t eat-fresh fruits and veggies. I don’t understand this at all but whatever. Can’t be around live plants or flowers. (Huh?) Can’t deal with pet waste, including aquariums, which didn’t matter because that’s Kris’s thing anyway. Just find it odd. I can’t do any housework (no, she honestly said that) and I can’t do anything that would cause me to get a bruise. There’s a big list of stuff they gave me. It’s weird. Anyway, my count today was at 28,000 and once you reach 20,000 your body can bleed without injury so you have to get a transfusion. Not cool.

Good news: NO MORE CHEMO!! I’ll take that. Unfortunately, it's not because I finished. They said my body physically can not handle it anymore. I told y’all the chemo was trying to kill me, didn’t I!? They said it was to the point it was doing more harm than good, and we just couldn't continue.

I still have 11 more radiation treatments to go, then the Brachytherapy (internal radiation) and then the immunotherapy. But that chemo was fucking brutal and I’m over the moon happy to be done with that, regardless of the reason. I just hate that we wasted this billion dollar patch. I was genuinely curious to see if it could win the battle against chemo. Patch vs Cisplatin. Guess we don't find out today. I'm good with that, but I feel really bad because someone else out there as sick as me could have actually used it.

Next Wednesday, I have a biopsy for the clinical trial. I have to be there at 5:30am so they can prep me and get me put to sleep because apparently this is going to be an intense one. Yikes.

Anyway, just wanted to share my exciting news. I totally cried when Erin called to confirm the chemo was done. No shame. The fight isn’t over yet, but this is indeed a victory for me. It puts me one step closer to feeling like myself again. Eating normal food again, and just not feeling sick all the time.