At War With Cancer : Now Public

When Rhiannon was fighting Cancer... we often found it exhausting to repeatedly share updates with friends and family.  At times telling relaying bad news outbound was very difficult to do.  At other times we found it difficult to deal with the reactions that our friends and family would have to updates....

We privately created a blog-space for Rhiannon to share her journey when she was first diagnosed in 2015.  The only way to access then was to have a password.

I've decided to open up these little journal entries for people to find and read.

Took this photo during one of our last visits in Tulsa at the CTCA.  Rhiannon had spent a number of weeks in and out of hospitals in Texas and we were at the end our emotional rope.  I have hundreds of photos that capture her beauty...  but this one speaks to me in an indescribable way.

time flies when your having.... chemo?

hello folks! long time, no write. My apologies, time has gotten away from me lately. Mostly because I'm exhausted all the time. Apparently chemoradiation will do that to a gal. Fortunately, I don't have much to write about. Today is my 3rd chemo treatment, of 4, Tuesday will be my last one (hopefully). I'm a little nervous about doing one today (Friday) and another so soon but I'm sure I'll do great. I always do, cuz I'm a boss like that. 

My last radiation treatment should be 12/1 followed by 3-5 "boosters" and 6 sessions (3 weeks) of internal radiation. As shitty as it sounds, this actually feels like it's going by so slowly. I don't think others share this opinion but when the :::surprise::: additional 3 weeks got tacked on, I feel like it's never going to end.  

I'm kinda struggling at stuff to write right now so I guess I'll try again later. I'm distracted by 7-11 Sriracha popcorn at the moment. So GOOD y'all, so. good. Having cancer often times makes me feel like what I imagine pregnancy to be like. Cravings is one of those symptoms...  

Love you all! #fuckcancer

#chemoselfie

Chemo - Day 1

I haven't written in awhile... sorry guys. This week has been weird... Last Friday my first chemo session got cancelled, which was a total bummer. Not that I'm like dying to get chemo'ed up but I would like for this shit to end at some point and anytime anything is missed it basically tacks on a week. Put this in conjunction with the fact that I have the incredible joy of experiencing this throughout the holidasy season, and a set back could tack on multiple weeks.   

The weekend was fine and pretty uneventful, since I didn't have chemo, I didn't really have any symptoms to worry about. 

On Monday, I went back to radiation as usual. Dr. Z (the radiologist) meets with me every Monday. On the way out I casually ask her if she has seen my tumor, how it looks, etc... After a short weird conversation, this leads to her "reminding" me of a three week 'implant radiation' treatment that she has already told me about (this is bullshit, and ends up being a lie), We sit back down and she explains to me that after this 5 weeks of chemo and radiation I will not, in fact, be done. I will then need 6 treatments, to be conducted twice a week for 3 weeks, of additional internal radiation treatment. This will happen at a different location with a different Dr. that I haven't met yet. I'm sure you're womdering how we went this long with no mention of this treatment before. You and me both, keep wondering cuz no one will fess up to making a mistake. I'm sure you're as shocked by this as I am. :::eye roll:::  

On Wednesday I met with Dr. Eng, my new internal radiation Dr. He pokes around a bit and confirms the 6 sessions. During internal radiation, they will insert different tubes into me in different areas of my pelvis and feed a small radiation 'seed' through them to internally radiate my cervix and eradicate any and all cancer cells. Supposedly, at this point, if all goes as it should, I will FINALLY be done. 

Because of the holidays and what not coming up, my new goal is to be cancer free before the new year! I do not want to take this cancer shit into 2016...  

I got a wonderful, inredible, awesome massage on Monday that made my hip feel really good and actually stop hurting for awhile. This was ruined by Dr. Eng and his poking and now it hurts again. Fuckin' Mr. Miyagi...  

So... here I am, experiencing my first chemo session. So far So good. I'm in here with 4 other women getting chemo and their guests. Some of them are VERY annoying. Sorry ladies. I love you all, I will pray for you, and I hope you all kick cancers ass! But seriously, shut it down in the chemo room. Thx.  

I think that's all for now. Love every single one of you reading this thing and riding this ride with me.  

#fuckcancer

There's an IV under dat kleenex...  

Downtimes

Wanted to quickly post a picture I took of Rhiannon and I shortly before we were alerted that our scheduled Chemo Therapy session was going to get canceled.

This isn't a picture of her in physical discomfort.  She's in physical discomfort every waking moment of the day and finds pockets of time to sleep with pain at night.  

This is a photo of us emotionally dealing with another setback.  It wasn't necessarily bad news... it was however another example of routine things not going as planned.

Not seen in this photo is how scared we were of not know what to expect last Friday.  We technically still don't know what to expect during Chemo because we're in the process of having that scheduled right now.

This is however a glimpse of what the downtimes are like.

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#fuckcancer

3 down... 22 to go

Good morning team #fuckcancer! Today I finished day 3 of 25 of cancer treatment. I don't know if these things get time stamped but if they do, you may be wondering why I am saying 'good morning' at 7 o'clock at night. Radiation makes me sooooooo sleepy.... so so sleepy. Today, for example, I slept for 5 hours without even knowing it AT ALL! I think I slept the way children sleep when they are super tired. Like dead to the world, apocolypse could have happened and I wouldn't have known. I ended up feeling horrible about it because I scared Rollie while he was at work so bad he rushed home to make sure I was ok... 5 hours is a long time to be missing during the day. 

Other than that treatment has been ok... not exactly what I expected but manageable I suppose. The Dr. Dubya didn't really do a great job of describing treatment to me, or I'm just an abnormal person but it's been a bit surprising. I was led to believe that the first week wouldn't really feel different at all. Little to no symptoms or uncomfort. That's not quite true.  

Besides the tiredness, I have had a bit of food sensititivity. I tried to have a hot dog last night (not the best food, I know. However, a food I LOVE none the less). Two bites in, it made me throw up... This made me very sad... Like emotionally unstable sad. I started crying. Yes, I cried becuase I couldn't successfully eat a hot dog. A food that is horrible for you. 

Which leads me to my next set of weird side effects... smells. Smells make me feel sick, sometimes in my tummy, sometimes in my head... Like I want to cry again if I smell something weird.  

I've never been pregnant but from what I can gather, this is pretty similiar. Super tired, and everything I touch, smell, eat or see makes me want to throw up, cry, or both. So far this is awesome.....  

I'll have my first chemo session on Friday. I'm a little nervous about this. Again, they told me I shouldn't experience anything weird or uncomfortable the first time. However, today they had me pick up 2 presecriptions they called in for post chemo. They are 1. dexamethasone (cool, another thing with meth in the name. Great, not.) this is an anti-inflammatory drug that I take for 2 days post chemo and 2. Prochlorper, this is used to keep people from barfing all the time. Sounds like it's going to be a fun weekend y'all. 

All in all I am really trying to keep a positive outlook and mentality, but I won't lie. This week has been a bit of a struggle.  

Oh yea, I forgot to mention... you know that horrible pelvic and hip pain the cancer causes me to have? The pain that is supposed to get better around week 3 because the cancer is going away? Yea, they neglected to tell me (until Monday, post radiation day 1) that during week 1 this pain typically gets much worse because the cancer  'gets very angry' that you are trying to get rid of it. Yep, it's angry. All this info while also simultaneously telling me to make every attempt I can to take less ibuprofen, even though that is the only thing that helps, because it's not good for you to take alot of ibuprofen for so long. Thank you, I know. You know what else isn't good for you? Having fucking CANCER! 

So, that's it for week 1 so far. The good news is, I'm gonna make it. Someday really soon I will wake up and I won't have cancer anymore. And that day is gonna be really cool. Until then,  

#fuckcancer  

This week on... "Living with Cancer"

This week was fairly uneventful. I suppose I should be thankful for weeks, or even days like that, so I am. The pain from the CO2 didn't fully go away until Monday, but it really took my focus off of any of the other pains. Now that everything has pretty much settled into normal I feel like I'm in a pretty good place physically, all things considered.

The only pain I'm having that just continues to piss me off in the most gratingly annoying way is the hip (it's like my own internal Kardashian family. Completely, mind numbingly painful and WILL NOT GO AWAY). The hip hurt pretty bad before surgery, worse than it does now, but I wasn't sure of the reason for the pain. Now that they have gone in and I know more about the situation with the rogue node, the way the pain in the hip is makes perfect sense. I think it also makes it more top of mind. It pretty much feels exactly like what it is: a 'hard as a rock' enlarged rogue node stuck between and pressing on a vein and a nerve in my hip. It's hard to manage with pain medication because it is basically a pinched nerve, it also makes the blood flow to that leg feel very restricted which is weird feeling more than painful. The silver lining I'm trying to put on this is that it should be a pretty clear indicator for when the radio/chemo starts to work. If it hurts less/feels less weird, I know it is getting smaller and going away right? Dr. Dubya (this is the new nickname I have made for the oncologist, Dr. Wilder. He will be known as this from now on) says it won't feel better until about week 3, I'm thinking week 2 because as we all know I am quite the overachiever when I want to be, and I want this one bad. 

The hardest thing about this week has been the lack of activity really. I had another radiation simulation on Wednesday to confirm that the prison tats they put on me where still correct post op. Side note: this was not their idea, it was mine. They basically had no idea what I was going into surgery for... awesome. Everything was fine so I am now FINALLY starting radiation on Monday. I feel like it has taken forever for this day to come. This is another thing that I am sure I would not have started had I not pro actively called and annoyed them into making appointments for me. It's got to be so hard for people who aren't that outspoken, or even people that are scared. I would imagine if you were scared you wouldn't really want to start so you would wait for their call? I believe that route would make this process take 6-8 months, basically twice as long.

That being said, I might be the most excited radiation patient they ever have. I feel like the first day of school is coming up and I'm gonna kill it. I had a really rough true first day of school back in '91 so maybe I can make up for it now. Like, I'll walk into radiation with my side pony, Simpsons backpack, Lisa Frank trapper keeper and just rock this bitch. I'm gonna ask the teacher... I mean nurse... all the right questions, and take notes, and make her laugh, and I'm gonna be her favorite student... I mean patient... ever! Whew, got a little out of hand there. Anywho, you catch my drift. 

Chemo starts on Friday the first week, but I don't know what day of the week it will be after that. I have to take this whole day off so I really don't mind it being on Fridays, lol. Lemonade out of lemons right?  

I think those are all the updates for now, gotta get back to this game. It's been a little rough. Yikes... OOOW, we just scored! Phew! #rolltideroll

Love Y'all! #fuckcancer  

Post Op - Day 2

This won't be too long but just wanted to send out a little update. All in all I'm feeling pretty good, however, I seem to be really effected by the CO2 they pumped into my abdomen during surgery. Long story short, apparently during a laproscopic surgery of this type, they pump the abdomen full of air to make the organs more visible and make more space for the robot to do it's thing. I was warned by the nurse after surgery that sometimes the air gets trapped in the diaphragm and causes some pain in  the shoulders. When I wasn't experiencing any of this by mid afternoon yesterday I thought I was in the clear. I found out at 5am that I was not. I woke up with the feeling that someone had sledgehammered me between my shoulder blades. Seriously y'all, this hurts alot. I have been told numerous times about the advantages of laproscopic surgery and I have no reason to believe they are not true but this air thing... is no joke. I'm using some googled remedies to try and alleviate it now and it seems to be working somewhat. 

Also, avoid getting surgeries on Friday late afternoon if you ever get the option. It's like the worst fucking idea you could ever have. If there is a problem  with anything (prescriptions, pain, questions, etc.) you literally have to call 9-1-1 or wait until Monday. 

Don't worry, I don't have anything this serious. But you do have to sort of think of those things in case they were to come up and it's kinda scary to be stranded out on the weekend. 

Everyone has been really great though, my mom is going to come help me out tomorrow, since I still can't do some things like ya know... put my socks on. 

I was pretty bummed today that I had to cancel plans to hang with my bro, sister in law, and the ninos but the pain was a little too much to handle. I've insisted they take me up on a rain check though, sooner rather than later.  

On a more positive note, I've gotten some pretty cool get well soon gifts. So, that's dope!  

Love you all! #fuckcancer

Sick people get all the cool shit. Thanks Kate!  

p.s. no one is allowed to judge me for the way I look in this photo, because I am sick. Yes, I plan on fully milking this for all it is worth until December 3rd. Deal with it.  

Goodbye my node...

The rogue node is gone (mostly). The smaller one was actually not an issue so they left it alone. The left one however, was very large and located beneath a vein and on top of a nerve. The location made it tricky for the Dr. to remove for fear of bleeding and potential paralysis of the leg. That being said, the Dr. removed as much of it as he felt comfortable doing and is confident the remaning cncerous part will be eradicated during radiation and chemotherapy. 

The surgeon was running late and my surgery did not start unil 5pm instead of 2, oh well, all's well that ends well I suppose. 

I'j in a lot of pain right now so I'm going to cut it short. More details tomorrow. Love y'all! 

#fuckcancer

just a little pre op potty break! 

And so it begins...

Tomorrow is the true beginning of "treatment", I am having my surgery to remove Rogue Nodes at 2pm. Also my cirque de soleil ovary suspension. The last couple of days have been a little weird... I've discovered that I fall into that weird 'middle class' where I make too much money to get any real help with my medical expenses/needs but not enough money to just straight up pay for all this stuff on my own. It's been pretty frustrating, I'm not really sure how much debt I will be in when this is all over but I figure I'll worry about that after my body isn't riddled with cancer that is trying to destory me. I'm not sure if that is the right approach but it's the one I'm taking. 

Also, found out today I won't be able to start radiation until 10/26 but the reason is a good one so I am ok with it. They want to make sure the radiation marks they made on my body are still accurate after they move my ovaries, obviously so they can try not to radiate them and spoil my eggs. They did give me 3 new tattoos, I now have permanent dots on my abdomen that will forever remind me about the time I told cancer to go suck a dick and fuck off. I mean leave me alone... Whatever, no I don't. I meant the first thing, I don't care how unlady like it is. 

I found out today that the people who work in the billing department in the hospital are money hungry vultures who couldn't give two shits if I live or die. I'm sincerly considering writing a book, loosely titled 'How I beat cancer : While the medical system was trying to Kill Me'. It sounds morbid but it's truly unbelievable. My nurse confirmed that they were basically using scare tactics and lies to try and get me to give them more money. They told me they wouldn't perform my surgery tomorrow if I didn't give them and exorbetant amount of money. They literally can't even do that, according to my nurse. Fuckers... 

Anywho... tomorrow. 2pm. I'm really hoping this will bring my pain level down significantly. Deep down I feel like it will but I try not to get my hopes up at this point.  

I may write tomorrow if I feel good. If not maybe Rollie will. If not just text one of us. 

As always, much love to you all! and #fuckcancer  

One of my new prison tats... #hardcore  

Update - 10/13

Just a quick update before bed - I went and had my pre op tests done today for Friday. So far everything is still on track. The procedure is at 2pm, and should last about an hour. I'll let y'all know when I'm out and lucid. I also found out today that I am starting radiation on Monday 10/19 fo' sho. This is what I was hoping for so ::: thumbs up ::: to that. If everything stays on schedule this should allow me to finish all treatments before thanksgiving, woot! Needless to say I should have " what I'm thankful for this year" in the bag. Y'all better start working on some good ones, just saying. 

Overall everything is good. Just ready to really get this thing going so I can move on to wedding planning! LOL! 

Last thought, the further I get into this process the less faith I have in the medical system. It's literally so fucked. If myself, family, and friends weren't such passionate advocates for my health care and well being I would be INFINITELY further behind on my road to recovery. It's such a nightmare trying to get help. If you know anyone who is dealing with, or knows someone else who is dealing with something even 1/100th of the severity of this take time to let them know you are there and never give up. It's literally mind boggling the things you get told, the amount of time you have to wait, coordinating schedules, etc. More on this later. I could write about it for ages and it makes me SO ANGRY! 

As always, thanks for reading and checking up on me and let me know if you have any questions, comments, or concerns. Either here or privately. I love y'all!  

 #fuckcancer