#and ive got a chiropractor appointment in the morning | Explore Tumblr Posts and Blogs

nikkithomas · 4 years

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Here’s the deal. I started having a lot of pain in my lower back, legs and hips. At first, I went to the chiropractor and he did some adjustments. I seriously felt so much better.

My regular doctor had prescribed some medicine for me for an unrelated thing and it made me so sick. I’d be so nauseous that I’d have to go get fresh air...walk it off...or even splash water on my face. That had been going on even when I was in Knoxville.

Aircheck had asked me to talk about my ACM trip to Vegas when we won in 2019. I’m sure there were people who thought it was funny or maybe even crass...but they asked what I thought or what was going through my head at that ceremony...and I think my answer was something to the effect of “I was trying not to throw up” or something like that. My stomach was on fire and I felt so dizzy. My face was all flushed and hot. I thought about going to the ER there in Vegas...but I was afraid I’d miss the reason I was there...to pick up the ACM for our station. I think it was win number seven for the station...as a PD it was my third...and it was still a pretty big deal. Honest to God, I didn’t want to let anyone down. I also wasn’t sure if it was food poisoning or something. When I got back to Knoxville, went to my doctor...they ran tests...gave me some medicine...and I thought that was the end of it. They still couldn’t figure out what was going on with me, though.

I left Knoxville and moved to the Tri Cities. Best decision I’ve made in years, by the way. I truly love these people. They’ve done a phenomenal job of protecting their product and their people and I believe that’s why this station is still so healthy when many other legendary stations have suffered. The stress level dropped substantially. It’s amazing what can be accomplished when the station and the people are a priority. Which by the way...XBQ has been so much like KAT Country. It’s been everything I love about radio and thought I’d never experience again. These people couldn’t be farther apart...yet be so much alike. It’s a good thing.

The main thing bothering me then...was my back and legs. Kept having some really nasty pain. The pain was so intense sometimes that it made me nauseous. My face was flushed...I had a fever...then I didn’t have one. Maybe it was my weight? I was getting up to pee a lot at night. Only sleeping one or two hours in a stretch. It was all these things that I never put together.

I wanted to get healthy. Told my doctor I wasn’t going to take that medicine that made me feel so bad...just in case that was the problem. My endocrinologist was cool with that. I started the keto diet. Actually...I did keto up until right before Thanksgiving.

I was so happy. My thyroid is absolutely hateful...so losing weight is the hardest thing to do it seems. On keto...I dropped over 30 pounds. Wow! I thought that was great!! Everything felt better. My energy levels were up. I’d get up at 4am and wouldn’t stop until 11pm...and everything was good...until my hip, back and legs started hurting again. It was so bad one morning that the guys I work with called chiropractors for me. It was awful.

The pain had never really stopped...but at a certain point you just get used to the pain and move on as best you can. That’s what I did up until a few weeks ago. If you know me, you know that I love Toys For Tots, St Jude, Second Harvest, etc. We were out with the marines working on Toys For Tots and I ended up having to miss one day because I hurt so bad. Now for me...that’s bad.

It never let up. I’ve just pushed through and tried to “suck it up” since then. That was a couple of weeks before Christmas. Y’all I seriously thought it might be psychosomatic. Maybe it was all in my head. If it hurt...I’d try to stretch or move and work it out of my body...but that NEVER worked.

So...I go back to the chiropractor. Those guys were so good to me. They can electrocute me anytime they want. (All hail the TENS unit!!) That seemed to be working...and then we had a little bit of a COVID scare at work...(everyone is okay, thank goodness). Around that time...I was running a fever off and on. Low grade. There were some other things that weren’t feeling quite right...so...just to be safe...I got another COVID test and quarantined. Still...I felt like I was ALWAYS in pain. Sometimes it was so bad...I couldn’t move or do anything in any way to make it stop. It made me want to cry. It was embarrassing. It was frustrating because I couldn’t get it to let up. It got so bad that last Saturday I drove myself to the ER to get checked out.

Urgent Care said they couldn’t help because I needed “imaging”. Well...I got that imaging done folks. Turns out...I have a scary mass on my right ovary. It’s pretty huge.

I went in Saturday night...terrified of being around sick people...but it had to be done. The pain was so intense...that my blood pressure shot sky high...and my nose starting bleeding. The doctor ordered morphine, Norco and a CT scan.

The guy doing the scan was a travel nurse. He went from being pretty chatty to sort of quiet and reserved after the test. When they injected the dye into me...he was telling me it would hurt...and it was nothing compared to what I was feeling.

I woke up two hours after the scan to the doctor on call sitting next to my bed and looking sorta weird at me. She told me they’d received my test results and everything I’d said was right on the money.

The burning, pressure, aching, tension...all of it...was related to what she referred to as “not the biggest mass” she’d ever seen...but “one of the largest”. She was surprised I’d been walking around with this thing in me for God knows how long.

Now here’s where the story goes off the rails.

That doctor at Ballad mentioned the word “cancer” about nine times in that room. That was the “suspected” diagnosis. She said I needed to follow up and see another doctor because of what could be “cancer”...and told me they’d have to see if it had spread anywhere.

Now...that was a LOT to take in. So...I did what any other person with an iPhone, an unlimited data plan and tons of morphine in their system would do...I looked that crap up on “Dr Internet”.

The next time a nurse came in...I asked her...”Umm did you guys do a CA 125 test?”

That same poor sweet nurse, who would go on to blow a vein...and push the medicine through the IV into my skin, thereby causing a monster of a bruise and making my vein get rock hard...she said in this really hushed tone...”I don’t know...I’ll ask. I saw your report. I’m so sorry.”

At this point...I’m facing my mortality. I just wanted out of there. I wanted this damn thing out of me...I wanted answers...I wanted everything to be okay.

I still want everything to be okay.

By the way...she never came back in with the answer to that CA 125 test question. So I took that as a hard “no”...or “they did it and don’t want to tell me”.

Monday I was back in the ER. Doubled over, in tears.

The doctor ordered pain medicine...that never came in the four hours I was there. That was NOT a fun time. The nurses just let me sit there. To her credit...the doctor was pretty furious when she found out they’d ignored her orders. Once again...this other doctor looks at me and says...”You know they think this is cancer?”

No. Still no test...but she made an appointment for me with a local oncologist.

Now...that CA 125 antigen test is not infallible, nor is it the end-all-be-all test for ovarian cancer. It is a marker though specifically for ovarian cancer.

So if they’re telling you that you have a massive tumor and it could be cancer...(two doctors over two visits..the word has been dropped about a dozen times...it’s also in the CT report...you’d think someone would bust out a needle...draw the blood...see what that looks like...and get you in the right frame of mind in case it is this horrible bastard of a disease!! Right? Wrong.)

The mass at the time was 10.3cm x 10.3cm x 7.1cm.

The oncologist couldn’t see me for a week...the gynecologist couldn’t see me until February 1st.

Yeah. No big hurry. I’m just having trouble walking. I’m in tears. I’m peeing...like a teaspoon at a time. I know that’s graphic...but if you don’t pee...you need to get checked. I felt like I was (and still feel, by the way) in the middle of a massive labor pain that wouldn’t ease off. It’s pain that makes you want to throw up sometimes. It’s super intense.

I went home that second time...sat down in my room...and I couldn’t help but tear up. I’ve cried two and a half times over the “state of things” since this started. Those are the “what am I going to do” tears...totally different from the “oh Lord this hurts like hell...dear God make it stop” tears.

Talked to our friend Eric who told me it was a shame I didn’t live in Nashville...because I could probably call Vanderbilt and be seen pretty quickly. Eric...was right. I’m three hours from Vanderbilt...but only an hour or so from Knoxville.

I called UT. (Go Vols!) That football situation isn’t ideal...but that hospital ain’t half bad.

Within less than an hour...the head Oncologist had looked over my CT scan and was working to get me in there ASAP. They’d have taken me that day...but it was too late in the day and I’d never make it down there in time. So...they scheduled me for Wednesday morning.

Before I walked out of the room that morning...they told me they were going to operate and get this out of me by Monday at the very latest. The schedule was full...so they needed to check on a few things before I left the hospital...just in case there was torsion or whatever.

I had a CA 125 test. That looked good from what I understand but my CT scan and sonogram looked sketchy. The mass appeared to be even larger since Saturday?!? (It showed up as being 12.6cm x 13.3cm x 8.3cm) They gave me a COVID test and told me to self isolate until my surgery...which is scheduled for tomorrow.

It was upon learning how much larger this thing had become...that I named it...”Larry King”.

I don’t know why...but that seemed to be the name that fit whatever this thing is inside me. In my mind...it looks like Larry King...holding two shot glasses. One shot glass is filled with Dewar’s...the other is filled with Metamucil. He has a cigarette hanging out of his mouth...but I don’t know if he’s a “smoker” yet.

If it officially comes back as cancer...I’ll let you know. If it doesn’t...I’ll let you know that, too.

I’m not writing this for pity or attention...on the contrary. It’s all a lot for me to take in...and I’m just not sure how to process it all. Writing it out sort of helps.

In the middle of all of this over the past week...Tom Starr passed away. He was such a sweet man. There’s a picture that he took of us at CRS...it’s me...Tom...Lisa McKay and Heather Davis. I think Heather wrote a caption that said something like “it’s so hard to believe half of the people in this picture are gone”.

That was pretty heavy.

I’m still trying to process that actually. I thought the world of Tom, loved Lisa McKay (she got me when so many others didn’t)...and just to the left...there I was. I felt like a jerk for even taking a moment to feel bad for myself. There are so many other people who have it so much worse than I do. And what if there’s nothing to this thing? What if it’s just some sort freak thing? There are so many people who’ve fought so hard and powered through so much and here I am...maybe worried for nothing...getting ready to have surgery...and it feels wrong to worry about myself. Whatever is done is done and I’ll fight whatever I need to fight. If it’s not cancer (oh God please let them all be wrong) then I have a lot of things that I need to do...and other people’s opinions and judgment that don’t have any place in my head or the right to exist in my life’s body of work or otherwise. I’ll just keep praying for them.

I keep telling myself those doctors could be wrong. Until I see a pathology report...this isn’t real.

While I appreciate and am thankful for any prayers you can send up on my behalf...please don’t feel obliged to write anything on this post. Seriously. I just needed to get this all out and behind me.

I HATE “bleeding on the internet”. It’s a serious pet peeve. Not everyone is worthy of knowing everything that’s going on...nor should they be expected to care...but I realize sometimes people need reinforcement and support. I still don’t like sharing MY business on here. It feels weird. I’ll talk about things on the air...that I don’t care to regurgitate on Facebook.

I’ll talk about award shows, TV, things that are funny...pictures...but it’s not my business who you vote for or what you believe in. I’m just glad that you DO. Better to have convictions and purpose than be apathetic. Over the years...it’s been amazing to see how a simple picture I’ve posted or link (without even commenting on it...just a pic or simple URL) how it can make people lose their minds.

You will never solve life’s problems on Facebook or any other social media platform. It controls you. You/we are merely the peanut gallery from which billions of dollars are “mined” every single minute we’re on here.

The smartest thing I ever had laid on me about social media was from an interview with a Silicon Valley person that said “If you’re not creating the product...you ARE the product. Think about that.

Our world is so messed up right now. And no matter what party you’re affiliated with...it just seems very wrong to lump everyone together and vilify them all. Not everyone is evil. Not everyone is right or wrong. Writing people off is so inhumane. You really can disagree with someone and not hate them.

I remember being at a concert in a few years ago and had just learned some pretty tough stuff that was impacting a competitor, and shared that with one of the leaders that I worked with. They’d taken a huge blow...which was awesome strategically...but it happened at the same time the competitors PD had lost his mother. I remember expressing that I felt bad for the guy (specifically about losing his mother)...and without batting an eye...the guy I worked with said he didn’t feel sorry for him at all. “That’s just too bad!” He said other things but I won’t go there because that would reveal who that person is...and the person for whom he was speaking about that day. Now...in my heart I hoped that guy who up until then I’d had so much respect for...did NOT know what happened to this guys mom. It just felt gross talking to him. I never looked at him the same way again. It was all about depth. There was nothing there. Very disappointing. I once cared what this guy thought about me...but that was done. And living through this now underscores that feeling and reminds me on a personal level what really is important. That’s a lot for a workaholic like me to process.

I’m signing off now. It got sort of “ramblesque” there at the end. Sorry about that. As for all the other stuff...I’ll let you know how it all turns out.

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it-happenedtome · 6 years

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It wasn’t anxiety, it was brain cancer

For years, I struggled with food. I would have random bouts of nausea and vomiting, or even just hours of nausea with no vomiting (which can feel worse). I would be terrified to leave my house at night and go somewhere because I would always be scared of getting sick and having to leave early. I felt guilty burdening my friends, family, and fiance with this fear and EVERY doctor I saw said it was some other stupid and incorrect diagnosis. I’ve heard I’m allergic to gluten, I’ve heard I have acid reflux, I’ve heard it was anxiety and all in my head. Nothing seemed to work and no medicine helped. I began to fear that people thought I was making it up to get out of things or leave places early, but the truth of the matter is that it killed me to leave so many important events early and miss out on memories. I took every test imaginable and never got any answers. This went on for 2 years.

Then, the headaches started. They were at the base of my skull, and excruciating unlike anything I’ve ever known. They felt muscular because they were so close to my neck, and they were pounding and constant. They started off with pain when I would yawn, stretch, go from sitting to standing and vice versa, etc. Then the pain became 24.7. I couldn’t function. I started yoga, I started seeing a chiropractor, I did everything I could to relieve the pain. Nothing helped. I used to be awoken by the pain at 3 in the morning and go to the kitchen in a daze to grab an ice pack to fall asleep on so that it would numb the pain enough for me to doze off again.

I was naive and I thought nothing bad could possibly happen to me because I’m young, and I have the hubris of believing that I’m invincible. This blog is so people understand just that--it happened to me. Listen to your body when you KNOW something is wrong. I let doctors blow me off and blame anxiety instead of taking me seriously and I suffered for longer than I should have.

One night, I felt dizziness like I hadn’t before. I blew it off, but the next morning I was super nauseous. That night, I went to the ER thinking I could just get an IV with some fluids and feel better. I mentioned my symptoms and the doctors thought it was vertigo because of the dizziness. I’m so lucky the doctor there suggested getting a CT scan of my neck because he was worried the chiropractor had messed me up. Once we got the CT, we saw something poking out from my skull. We did a brain MRI and were told there was a golf ball sized “mass” on my brain, on the bottom left side pressing on my cerebellum. The muscular headaches were caused because the tumor was pushing on my left ventricle artery and hurting the muscle, and the nausea was because my brain fluid wasn’t allowed to drain because of the tumor. This meant I had 2 years of fluid buildup in my brain and this was making my body want to dehydrate itself by vomiting as much as possible even though that didn’t help. It was also because the tumor was right on the center of the brain that controls nausea (lucky me). This all happened at like 3 am on January 16, 2018.

On January 18, I had brain surgery. I had no idea what I was getting myself into. Cancer wasn’t even a word anyone had used yet. We didn’t even consider the possibility that this wouldn’t be benign. I was extremely lucky with my surgery as I had NO complications and he got the entire tumor. Within a month I was driving again and my recovery was great. I had no headaches, dizziness, or nausea. I felt so lucky my problem had been solved. I was back to work and eating whatever I wanted, sleeping through the night, living as I always should have.

After pathology failed to give us the 100% clear that my tumor was benign, we tested it at several other places and were told the news that I had medulloblastoma, which is an extremely rare, aggressive pediatric cancer. No one knew where it came from. There is no history of anything like this in my family. I got lots of tests done which thankfully proved it hasn’t spread, and then started radiation.

Before radiation, I had to go through a very invasive and private process for about 3 weeks, one I’m not comfortable sharing online. This process was horrible. I had to inject myself every night, get blood tests every day, discuss things I’d never worried about before, and then have another surgery. It was an emotional roller coaster and it only weakened me.

I was told radiation would be easy and a breeze. I had to do 31 rounds and from the first one I was miserable. I was told I would be able to keep working throughout radiation but the first night I was a wreck. I emailed my HR guy off the bathroom floor and told him I wouldn’t be coming back, and I didn’t know for how long. I was vomiting for hours at a time, unable to eat, get out of bed, or even function normally. I had to go to everyday, 31 days in a row. I lost all of my hair as well as about 15 pounds. At one point I was vomiting blood and needed another procedure. Radiation was pure hell.

Once it was over, they gave me a month to recover before I started chemo. My chemo regimen is cisplatin (causes loss of hearing and messes with my kidneys), then one week later vincristine for 3 weeks in a row (causes extreme fatigue), then one week later 2 days of cytoxan. This regimen, only 1 round, completely killed me. I was vomiting, nauseous, and dry heaving for 12 days straight. I lost another 20 pounds. At a certain point I was delirious from starvation and dehydration. When you get to a certain point of physical torture, when it’s 4 am and you haven’t had relief in days and it feels like there’s no end, you start to wish you wouldn’t wake up anymore. You go to a very dark place and start dreaming of euthanasia and start wondering what the point is of even fighting to live when being alive is TRUE torture. No one understands this. They just say things like “don’t give up, fight through this, you’re a survivor, it’s all only temporary!” To them I say, try going through the emotional and mental trauma of having cancer at 25, and then going through the physical HELL and trauma that only a cancer patient can understand. I finished that first round but I told my oncologist I can’t go that heavy for the next 5. (I have to do a minimum of 6). She’s slightly changed my regimen and has promised me it will be easier to deal with. We’ll see.

I’ve been up since 5 am because my appointment with my surgeon is today because my incision was infected. The antibiotics he prescribed have been killing me and I won’t be taking them anymore, as I have become very resistant to doctors and the things they want me to put in my body. I want to take some control back. I also will get my MRI results to pray and hope that there isn’t anything of concern in my scans. This is my current cancer story and I can’t help but cry about it every day so I decided to write about it as the sun comes up.

#cancer #chemo #chemotherapy #medulloblastoma #brain cancer

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thejourneytomyheart · 3 years

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May 7th, 2021- My Surgery Info

I’m back! It has been a little while since I have written. Mostly because, well, life. Life is busy and chaotic. Also, it’s been mostly uneventful the past year with COVID. However, the positive of that is that I have just been able to be spending time with Scarlett. And my blog was mostly about my journey to getting Scarlett. So I haven’t posted much else because we got her and that is the end (or new beginning) of that chapter. This post sort of goes with that theme.

I am going to apologise in advance if something doesn’t make sense. I am trying to watch as I go. I am on high pain meds as I type this. Why? That is why I am updating.

***The short version- I had surgery today, May 7th, to remove my left ovary and tube. When they got in there they were actually able to save the ovary and only took the tube. They did send something to pathology, but he said it didn’t look “too bad”. It was laparoscopic and I am home now recovering. If you want to know more and what led to this, keep reading.

Full backstory:

I had been having pain. Pain in my pelvic area since after Scarlett was born. Obviously that is normal after growing a human and pushing it out down there. SO I didn’t think anything of it. 6 months past, still had it, one year came so I mentioned it to my OB. She said it really shouldve went away but since it’s getting better (and it was and less often) then it’s possible to just be leftover from that.

Well, it got less and less. But, I would have flare ups. And when it hurt, it hurt. It was not just my pelvis, but my lower back, hips, groin, buttocks, etc. So this didn’t seem like an OB issue. I just let it go. Until I randomly had a could of days that it flared up and I literally could not walk. It was awful. I thought maybe it was something I needed to see a chiropractor for. BUT, I still believe whatever it was stemmed from giving birth. So, FINALLY, I decided to call my OB. Got the pap smear. Came back normal. But she ordered an ultrasound.

So, on April 9, I went for the ultrasound. Then I was supposed to discuss the results with my doctor in an hour. Well, she got called away for a delivery. So they set me up with a virtual consult with her the following Wednesday, April 14th.

April 14th- Consult with my doctor. She said there was “a lot going on in there”. Some fibroids and small cysts that can be normal, blah blah, but she wasn't worried about them. BUT, on the other side there was a huge cyst. About 5-6 cm, so 2.5 inches. She was a little concerned about the size, but what most concerned her was that it had “several small nodules with vascularity”. So normally cysts are fluid filled. Women have them all the time and don’t know. The body normally absorbs them. But they can get big, they can rupture or burst. I have had one burt before (multiple times) and that is THE WORST pain I have had in my life. It landed me in the ER three times. AWFUL. If you know you know. Then came the words… I am referring you to a gynecological oncologist/surgeon. We need this out and it will need to be tested. Beyond that, it is his expertise. The Cancer Center will be calling you to set up an appointment. That word is scary. Cancer. You hear it all the time, but it sounds different when it’s about you.

I get home and I am still shocked, numb, but still not sure about anything. Then I have to tell justin and of course he is very concerned. And doing things he shouldn’t do (googling).

They call me the next day. And set up an appointment April 27th. That seemed so far away, but apparently we were expedited and that was quick. The next two weeks were filled with so much mental exhaustion. (Also, dealing with a TWO year old, and end of the year school stuff). It was two weeks and thinking, and reading, and googling, and talking about the WHAT IFS. You can’t help but let your mind wander.

Finally the consult came. It didn’t give much more information. Basically you can’t know anything until they go in and look. Based on age, bloodwork, family history…. The textbook answer is that it is nothing. Of course, we all know there are exceptions. So it needed to come out. They decided they needed to take the left ovary and tube. Obviously the cyst would come out as well to be tested. The more scary part is when he mentioned that once he gets in there, if it has spread then we may need to take more...the uterus, the other tube, and ovary, etc… I want another baby, so this hit hard. We left, still in shock and waiting for a call to schedule the surgery. Went for ice cream, because…..ice cream. While there we got the call. May 7th.

So the next two weeks were a lot of thinking and planning. WHat do I do with and how will this affect taking care of Scarlett? How long can’t I work? What if…? SO many thoughts. Decided to take a full week off work. I know it is laparoscopic but I still feel like I might need a week. Writing 6 days of sub plans was the worst. And then lining up things with Scarlett. Then Justin has to make some sacrifices with soccer to be home more and help with babysitter drop off and pick up. I like to be in control of all of that.

Then I asked about weight restrictions (in my mind it will be like 20 lbs for like a week or 2. Imagine my shock when they tell me that recovery time is 2-6 weeks. And lifting restrictions at 10 lbs for 6 weeks. I immediately panicked. FIrst , I had to run down to my boss and tell her. Luckily she was really nice about it. Then, I was freaking out because I have a two year old that is 22 lbs.

So here we are, May 7th. Had to get up at 4 am to drink some gatorade by 5. We had to get to the hospital by 6. My mom stayed the night to stay with Scarlett in the morning because the sitter doesn’t open til 7. We get there, get registered and I go back for pre op. Pretty uneventful. I have never had surgery before so I was so scared. Had to wash up, get undressed, get the IV started. The anesthesiologist came in to talk. The surgeon came in to talk. Then they whisked me back to the operating room around 7:45.

Being wheeled into the operating room was THE SCARIEST. I started crying. In my head I was like, why didn’t they put me to sleep before bringing me in there. It was just a huge white, cold room, like you see on tv. Just one little skinny metal table in the middle with the big metal lights and people rushing around to get ready. The nurses were super nice and walked me through everything they were doing. They had country music on. This is how fast I was out...I have 2.5 songs that I remember. They put me on the metal table then had to strap me down because it was so small. Both arms were out and strapped and over my torso. They told me they were gonna take good care of me and I was going to fall asleep and wake up in no time. BOOM

My surgery was scheduled to be from 8:00-10:00.

Next thing I am “waking up” really just opening my eyes for a minute at I see a clock. I was in recovery and it was only 9:00. Nurse came in, said they actually only had to take the tube because the ovary was fine. Since I want more kids, he left it. And nothing else. They did send the solid mass to pathology to be tested. We will know those results in two weeks. I just have 3 small incisions. One is a little bigger to get it out. Then I fell back asleep until they brought Justin back at 9:30. He said I was actually done at 8:35. Then I was in and out 9:30-10:30. At 10:30 they said I could get dressed whenever I felt like it and recover at home. I literally thought I was going to be there til late afternoon/evening. Also, because it ended up being less than they thought, they think they may be able to back my restrictions to only 2-3 weeks instead of 6. (driving, working, lifting), which is a relief. I have to call him next week to ask. And then he will have to evaluate me before he releases me to do that. So, honestly, best case scenario. I do feel a little guilty because I am so lucky when I know others aren’t. But that just humbles me and makes me so very thankful.

Getting up was rough, dizziness, nausea, pain….. So it took a while. But by 11:40 we were on the road home. The ride home was AWFUL. I was sooo dizzy and thought I was going to vomit (but I didn’t). Got home and ate because i was starving. Then went to sleep (painful, but manageable). Just woke up. It is 4:30 ish. Wanted to write this and then I can take pain meds again.

Justin went to get Scarlett. I am worried about her wanting me to hold her. But, it is only temporary.

*No idea if this was due to Ivf, but very possible. Still worth it. Even if they would’ve had to take everything, I’d do it all again to get Scarlett.

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help-yourself-blog1 · 7 years

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let us begin.

Hello, my name is Jessica Kasch and in 2014 I was diagnosed with brain cancer. To be more specific glioblastoma multiforme stage IV. I want to share my story with the world and let people know that there is always hope. I want to inspire people to want to fight the good fight even when the odds are against them. I also want to inform people of the importance of a healthy and well maintained diet and what I believe has helped keep my MRI's clear and my spirits high.

It all started when I was having the WORST migraines with the worst pressure in my head and was in almost constant throbbing pain every day. I couldn’t even bend over to grab my dogs leash without my head feeling like it was going to explode. Most times I stood up I would black out and have to wait a few seconds for my sight to come back. Sometimes even just moving my head to the side could cause a black out. I was miserable. I started to see dots in my vision and could hear whirlwind sounds in my head. A little bit later I started to be able to see my heart beat in my eyes and towards the end I could see a black dot in my vision that was actually my pupil from my eye balls. For a few days I would wake up with terrible migraines that were so bad that they would make me throw up in the mornings. And throwing up in the morning made me think I was pregnant.

My mom started to get a little worried and made me set up an appointment to see her eye doctor because we thought most of what was happening was because of bad vision. I almost cancelled my appointment the night before because we were having a bbq with friends the next day and I thought I could put it off. The next morning when I woke up I didn’t see the black dot anymore it was RED! And I could also see the little veins.

That was it. I HAD to go see someone. I went to Dr. Antoine of Antoine Eye Care after the routine testing was done Dr. Antoine looked at the pictures of my eyes and decided to dilate them. I left the room to look at glasses while I was waiting for my eyes to fully dilate. When he called me back in he sat me down and asked me to call someone to come pick me up. I asked “Why?” and that’s when he told me I needed to go to the Emergency Room right away. He continued to tell me I needed to get a CT scan because there was a massive amount of swelling in my brain behind my right eye.

I was picked up by my husband (boyfriend at the time), and met my family at Missouri Baptist Hospital where I got my CT scan. The nurse called us into the back where we waited for the results. The woman that came in asked me all kinds of silly questions like, “What year is it?" and "Who is the president?" along with my name and birthday. She also made me do these little tests with my eyes and then had me push her away and pull her towards me with my arms and legs. I thought she was kidding because of how silly I felt so I was giggling. She then sat down on my bed and with a serious look on her face said “You have a mass on the right side of your brain.” I was still in the mindset that she wasn’t being serious so I chuckled. A few seconds went by giving me time to think about what she had just said, I looked to my husband and he was in shock with tears falling from his eyes. I turned to my mom and she looked terrified. I realized then that the nurse was most definitely not joking. From that moment on everything got real serious. I was rushed to Barnes Jewish Hospital where I had my very first MRI. After the MRI the doctors came in and officially diagnosed me with a “low grade” brain tumor. A week later my surgery was performed by Dr. Zipfel at Barnes to extract the tumor. The surgery was a total success and lasted 12 hours.

The surgery was a total success and lasted 12 hours.

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Around 4/5 days after surgery; as I was gathering my thing to leave for home, the pathology on my tumor came back. My tumor was not “low grade”. In fact it was as “high grade” as I think you can get. Right then and there they diagnosed me with glioblastoma multiforme Stage IV. The deadliest form of brain cancer. They were able to get all of my tumor out during surgery but since the cancer is so fast acting they had me scheduled for 6 weeks of radiation on my brain with chemo, and then a year of just chemo.

When I got home from the hospital the recovery was pretty harsh. I wasn’t able to do basic things like walk up and down stairs alone. I couldn’t sit and stand alone. Couldn’t go to the bathroom alone. I couldn’t walk alone. I couldn’t remember how to deal cards or do math. I couldn’t sleep except for on my back. I was on steroids for swelling that made me eat everything in the kitchen and gain like 20 lbs. The steroids made me break out all over my body. Not only did I look like Quasimodo with my boulder-like swollen head but I had acne everywhere that looked like a rash that covered my body all the way up my neck and face. I was miserable. All i could think about to stay positive was that I was alive and had my family with me.

Within a few weeks I was up on my feet, slowly but surly bettering myself. I couldn’t believe how supportive people were. My mother insisted that we stay at her house so there was always someone to watch me. My friends would come over to see me and bring me little gifts. I still remember everyone who came and those that showed their support in other ways and for that I am forever grateful.

A few weeks after my initial surgery my head started to leak fluid at the incision. I didn’t have a fever and I didn’t feel sick but I had to go to the Hospital to be checked out. After a week in the hospital being looked at, I was sent back home. The next week my head started to leak again. I had to go back to the Hospital and was immediately rushed to the O. R. for surgery because there was an infection in my head. The infection was around the bone so my bone flap had to be removed. The doctors put me at ease letting me know that with the infection I would have a higher survival rate.

Because of the infection, I needed to have a PICC line put in my arm direct lining antibiotics straight into my heart. I had 6 weeks of this with Nurse Tyler waking up and giving me my medication every morning at 7 am and every night at 7 pm making it very hard to get a good nights sleep or be able to go out anywhere. Once a week an actual nurse would come to my house to clean the line.

After I finished my 6 weeks of antibiotics, I started my radiation therapy and chemo therapy. The thought of having my brain radiated was pretty scary but thanks to Tyler it was much easier to bare because he made me a mixed cd of favorite songs to listen to everyday.

After every radiation day he would have a picture drawn for me saying things like “fuck cancer day 1-30″. I actually ended up looking forward to my treatments because it was my time to just relax and focus on the music and not what was happening in real life.

In the beginning I was told I wouldn’t lose my hair from the chemo and radiation which was comforting because I took so much pride in my colorful hair. Well that wasn’t the case and I ended up losing all my hair after all. Bummer. It started to slowly fall out so I just had my surgeon shave it all of before my second surgery because I didn’t want to risk another infection.

Instead of being upset about my missing skull piece and bald head I took pride in wearing colorful scarves and wigs.

After getting diagnosed with cancer the hospital tells you to just go back to your normal diet but my family and I knew better than that. We immediately started to research. A huge help was and still is my moms chiropractor Dr. Laurie Mestdagh of Mestdagh Chiropractic. He told me what to stop eating, what to start eating and what supplements for me to take during the chemo and radiation process. He is truly a wonderful person. Thanks to him, my family and friends, and Tyler I made it through radiation and the first part of chemo with no problems.

After a little bit of time passed I was sent to my now Wellness Doctor, Dr. Eric Nepute of Nepute Wellness. He heard about my story and wanted to take me on as a patient pro bono. He really loved my spirit and the good vibes I was able to put off through such a tough time.

I have MRI’s every 10 weeks for the rest of my life and so far so good on everything! I couldn’t be more proud. I want to say “Thanks!” to my father and Tyler for coming to every boring MRI day and my results days. You guys make everything easier.

After my diagnosis I put myself on a SUPER strict diet and I’ll be posting more about that in other entries.

I thank God every day and night for my doctors, my family, Tyler, my friends and anyone else who has helped me through the hardest time of my life.

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#fuckcancer #fuckbraincancer #braincancer #staystrong #bjc #pma #love #family

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Hyperemesis Gravidarum: When Morning Sickness Becomes Life Threatening

Hyperemesis gravidarum (HG) is a rare disorder characterized by severe nausea and vomiting in pregnancy. It is a complex physiological disease that I suffered through not once, but twice, and I still have the emotional battle scars to show for it.

MY FIRST PREGNANCY

About two weeks into my pregnancy, I started to feel nauseous. Soon, I was unable to eat almost anything except for maybe a popsicle and some oatmeal without milk. Then the vomiting started. I asked my doctor for help and he basically told me I was overreacting and that I should “suck it up.” As if it were all in my head. Having never been pregnant before, I assumed this is what morning sickness was like for some women.

I tried crackers, ginger chews, seasickness wristbands — the cheap ones as well as the $100 ones — pregnancy lollipops to fight nausea, papaya juice… you name it, I tried it. Despite my fear of needles, I tried acupuncture, then acupressure, and even hypnotherapy. But nothing eased my nausea and vomiting.

A friend said, “But don’t you feel so much better after you’ve vomited?” I didn’t. This wasn’t the flu or food poisoning. This nausea never went away.

As my symptoms worsened, my gynecologist diagnosed me with Hyperemesis Gravidarum. She started to watch me like a hawk and had me come into her office on a weekly basis. Throughout my pregnancy, she assured me that my baby was fine — the hormones that were making me sick were actually helping the baby thrive. The sicker I was, the healthier my baby was. Reassuring as this was, I just kept getting sicker and sicker and found it increasingly hard just to function. I lost 16 pounds in my first trimester. I was 5’ 6” and 98 lbs. Downy “fur” started to grow on my legs. My ketones indicated that I was dehydrated and starving. That’s when my doctor put me on Reglan. This medicine, an anti-emetic, was given to me through a pump infusion in my leg. The location of the IV needed to be moved every three days because the site would become swollen, red and itchy. Before long, my legs were covered with welts. Even with the medicine, it was difficult to eat. I had a home nurse come to the house every week to check my ketones, my blood, and my medicine.

“Do you even want this baby?” — From the (male) electrician helping with our baby room

Before I got pregnant, I had a plan. I was going to eat only super-healthy, organic foods. I would exercise daily with pregnancy tapes. Instead, I found myself able to eat only oatmeal, Jell-O, popsicles and one particular Jamba Juice shake. I was forbidden from exercising because my doctor didn’t want me burning calories. I was concerned that I was unable to eat healthy food. My doctor assured me that she had teenage patients who subsisted on macaroni and cheese and Diet Coke and their babies turned out fine. She told me, “Your baby will get the nutrients he needs, even if he has to take it from your bones.”

All through pregnancy, I had heightened, overwhelming anxiety that caused me to have hallucinations that I was surrounded by spirits protecting me. I remember lying on the couch, so sick that I was unable to even watch TV or listen to it. I would lie there for hours and then look at the clock and see that only one minute had passed. I bought meditation tapes in an attempt to calm my mind, but I felt like I was crawling out of my skin. I didn’t know what was wrong with me. Later, months after my baby was born, I discovered that one of the side effects of Reglan is profound anxiety. Once the Reglan was out of my system, the anxiety went away.

Smells were the worst. I smelled things that no one else could smell.

I could smell pheromones wafting off of other people. I couldn’t stand the smell of my own husband and it had nothing to do with hygiene. I could smell if a product was expired. I couldn’t use toothpaste because of the smell and taste. I had to switch to fragrance-free shampoo and conditioner, which still had an odor to me — I think I was smelling the ingredients. I would joke that I had developed a “dog’s nose.”

I resorted to wearing nose plugs, the kind swimmers wear, in an attempt to block the many smells that bombarded me wherever I went. When I went to my ob/gyn appointments wearing my nose plugs, others in the waiting room would stare at me. I’m sure I looked like a freak. At home, I tried walking around holding a lemon under my nose (I’d read somewhere that that worked) but it didn’t help. I wore a nose plug at all times, even to Jamba Juice.

Well-meaning friends would ask me, “What would happen if you tried to eat something you think you can’t eat?” It would come up, that’s what would happen. And the vomiting was so violent (and often bloody) that when I puked, I would pee my pants (or worse). Soon, when I vomited, I would need to have my head in the sink while sitting on the toilet at the same time.

MY SECOND PREGNANCY

Although I had vowed to never be pregnant again, I felt like our family was incomplete. We could not afford a gestational carrier, which would’ve been ideal — my own fertilized egg carried by someone else. But then my doctor told me there was a new medicine that would help me: Zofran, which dissolves on the tongue. No more anxiety-causing Reglan and itchy welts on my legs.

Well-meaning friends said things like, “It’ll be different this time because your body knows what it’s doing.”

Well, this time was worse. I don’t know if it’s because I was having a girl and there was more estrogen in my body, but I started to get sick very early on. And I had a toddler to take care of. I was working on an animated TV show, but soon I was too sick to go in to story sessions and had to quit.

This time, I couldn’t eat oatmeal or popsicles or Jell-O. I couldn’t keep down prenatal vitamins. I could barely swallow my own spit. The Zofran which dissolves on the tongue tasted TERRIBLE! And it didn’t work! I was brought to the hospital to have a PICC line (Peripherally Inserted Central Catheter) positioned in a large vein in my chest, just above my heart. This would allow me to receive 24- hour IV tube-feeding, or TPN (Total Parenteral Nutrition), which bypasses the gastrointestinal tract when a person cannot eat or drink.

Because it was all I could do to just function, my parents, who lived across the country, flew out to help care for my son. While my husband was picking them up from the airport, I woke up to a pool of blood coming out of my arm. I was terrified. I called 911 and the operator was rude to me. He told me to “calm down” and was not sympathetic at all. When the ambulance arrived, the paramedics grabbed my son from his crib and put him in the back of the ambulance with me. He loved vehicles, so I tried to hide my fear and make it seem like we were going on an exciting adventure.

When we arrived at the hospital, I looked out the back of the ambulance and saw my ob/gyn walking by. What a stroke of luck! I had the paramedics call her over. She took my son with her to her office where the staff would look after him while my PICC line, which had been put in wrong, was fixed.

Throughout this pregnancy, I walked around with an IV pole or a specially-designed backpack in which I could carry my IV along with me. Because I was not consuming any food or liquid, I stopped having bowel movements. I was constantly starving. Nutrients were being pumped into my veins, but not my stomach, which grumbled and ached for food. I liked food, I just couldn’t eat it. Without the meds and the IV nutrition, I’m sure I would’ve died, and my baby would have, too. My home nurse brought me boxes of Saltines, Nilla Wafers and bland crackers. This made me angry. I didn’t have “typical” nausea. I wasn’t being stubborn and I didn’t have an eating disorder — I just COULD NOT EAT.

When my parents and my husband ate dinner downstairs or brewed coffee, I would vomit. They never turned on a stove or microwave. They learned to eat cold foods that didn’t emit smells the same way and stopped making coffee in the house. But I could still smell their food and would violently vomit every time they ate.

“I’m so sick of you women complaining all the time! You need to stop being so weak! Men would never complain the way you women do.” — From the chiropractor who yelled at me after I told him I felt nauseous.

The second time around, I wasn’t a skinny twig. In preparation for nausea, I had intentionally put on weight before I got pregnant. But I didn’t lose that weight at all because the TPN was filling my body with over 2,000 calories a day of liquid. I sloshed around with my big belly and quickly outgrew the maternity clothes from my first pregnancy.

Every day, I needed to inject my TPN bag with various meds and vitamins. It was complicated. It wasn’t until months later that I discovered that I hadn’t been preparing the tubing properly; I wasn’t getting the air out of the tube before connecting it to the TPN. If an air bubble had gotten trapped in my tubing and gone into my blood stream that could’ve been the end of me.

Because I wasn’t supposed to get the PICC line site wet, I needed help bathing. My husband would often help me. One time my mother was helping me when the Saran Wrap I’d used to wrap around my tubing (to protect it from water) got tangled. I asked her to help me cut it off. I don’t know if I moved or if she was nervous and panicked, but she accidentally cut my tubing and blood started spurting out. Thankfully, my home nurse was on her way, so no harm was done, though my mom and I were quite shaken from this incident.

Many times during my pregnancy, I would ask my doctor, “Am I going to die?” She would look me in the eye and say, “Would I let you die?” Which wasn’t really an answer.

My nurse told me about another patient who was hospitalized for her hyperemesis. I felt sorry for her — she must have it so much worse than me. The nurse said no, I had a more severe case, but I had a better support system at home. My nurse also told me stories of women who did not have comprehensive insurance so they went without good care or medicine (at the time, Zofran was $50 a pill) and now their internal organs were permanently and irreversibly damaged.

This was a scary time for me, but it helped to keep things in perspective. While I was struggling with my pregnancy, my husband’s brother was also walking around with a tube sticking out of his arm because he was in the end stages of cancer. We would sit around commiserate about our PICC lines. Being with him made me realize that as horrible as I felt, while he was dying, I was creating a life.

WHAT HELPED

Throughout both pregnancies, a lifeline for me was the HER Foundation (Hyperemesis Education & Research), which I was lucky enough to discover online. Women who had been through hyperemetic pregnancies were there to talk to me, assure me, and listen to me. They offered support, kindness and never judgment. They gave me hope and helped me believe that I could stick it out. The co-founder of HER, Kimber MacGibbon, was calm and compassionate. I knew if she had been able to get through it, I could, too.

WHAT I LEARNED

I had to learn to forgive myself for not eating all the healthy food I had intended on eating during my pregnancy and just do the best I could do. Late in my second pregnancy, I suddenly felt like I could eat something. And that something was mac and cheese. I told my husband and he dropped everything and went out and got it. My sister said, “Why would you want to eat something so greasy? Why not something bland?” But again, my nausea was caused by hormones, not sickness, so bland food wasn’t the answer. Soon I was able to eat fruit, which I craved. I also craved dairy, perhaps in response to my body getting ready to lactate. I always craved dairy when I was nursing — I even dreamed of drinking milk shakes. But food did not taste the way it should. Chocolate didn’t taste right, but I kept trying it, hoping it would again someday. I could not eat fish, chicken or salad. Lettuce was like eating metal.

TODAY

When I was at my sickest, my sister would remind me, “Remember, you get a prize in the end!” And it’s true. I have two great kids. My son is 15 and my daughter will be 12 in a few weeks. And although they were worth what I went through, I still feel traumatized by my pregnancies. I suppose I will always have a bit of post-traumatic stress syndrome. I still smell odors that no one else does, particularly pheromones… but at least chocolate tastes good again.

THE TAKE-AWAY

I am an incredibly strong person to survive Hyperemesis Gravidarum. My doctor told me about patients of hers who had terminated wanted pregnancies because their HG was just too unbearable. The fact that I came through HG not once, but twice, is something I remind myself whenever I face a challenge in life. If I could get through those pregnancies, I can get through anything.

Have you or someone you know experienced Hyperemesis?

Hyperemesis Gravidarum: When Morning Sickness Becomes Life Threatening posted first on your-t1-blog-url

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