Spring Break unexcitement

I haven't written in awhile because I am have been back in Urbana, Illinois for my spring break. The weeks before finals I had a random idea to spend 5 days in Hawaii. Tickets were cheap, but I had never been and had no idea where to look for a place. I put it off and by the beginning of finals week they had gone way up. I would have gone but it was stressful just finding a place to stay- I had no idea what island to go to and what hotels/hostels were good. But then my mom got sick so I changed my plans and tried my hardest to get a flight last Monday. No luck- I tried to get charity fares but there was nothing for a week. What's the point of that?!? Damn spring break. I finally forked out 600 bucks to fly out on Wednesday. I missed my first flight which made me miss the last flight to Urbana and so I had to take the bus home. Ugh. Sooo boring. But I finally made it home. My sis was up with her bf and he had shaved his head for me! My sis was pissed but her looked good. Anyways, it was nice to see my sis and all but I was completely focused on my mom...

So last week (morning of finals of course) my mom went to the ER with a really bad cough and some confusion/dizziness. Apparently on the way to work she was swerving a bit and actually got pulled over for it. She went to work anyways and her co-workers got her to go to the ER. Turns out she has bilobar pneumonia. The next day she was on a ventilator and had an SatO2 of 85% or something. I was freaking out and so that's why I tried to fly home early. I had no idea how bad it was until I got to the hospital. She looked AWFUL. She was heavily sedated and on high flow oxygen and two antibiotics. Her hands and feet were badly swollen, as well as her neck. What was really awful was seeing her tongue- it was hard from hanging out of her mouth for days. I cried when I saw her and had to leave the hospital after about 20 minutes.

The next day I saw her and she had developed a fungal infection and some sores on her legs. The doctor said she was getting worse and I asked the nurse to see her xray. Of course the first one said she couldn't show me because of HIPAA. The next one was like no big deal and showed us. I couldn't believe it- I remember seeing xrays in clinical and my patients had just little spots in their lobes. My mom had at least 70% of BOTH lungs full of crap. The whole xray was white.
It was hard for my dad and I not be the annoying family member trying to control her care. The docs couldn't culture anything from lungs or blood. We both got online and researched what could be going on and came up with a hypothesis that she could have legionella. I guess it doesn't always culture out unless you do a special test. This was plausible because she's a florist and spends a lot of time in the cooler which could house Legionella. Anyways, both of us had a lot of questions and probably annoyed the crap out of the doctor. I think they deserved it though- I guess her first doctor rotated with another one every week. As soon as the new one came on her ordered a bronchoscopy to check out her lungs. I guess they were full of pus and he was able to flush out a lot of it. Anyways I was pissed because the first doctor could have done this. She also didn't have compression boots on which bothered me. They were giving her heparin though so that was why. Should you have both? I guess I was most concerned that when she did get through this that she was at risk for clots. This totally bothered me...I was hoping that she would be off the vent some time while I was home but he said that she would probably be on the vent for 4-6wks! So upsetting because all I wanted to do was talk to her. At least have her know I was there.

The rest of the time at home was ok- I hung out with my sister and her boyfriend mostly. The house was pretty weird without my mom around. Pretty depressing. My sister's coworkers wouldn't cover for her so she had to work a little while I was home. She also had an orgo test the day I had my flight home so she had to study as well. Definitely a horrible spring break for the both of us. We did have some fun though- we all had a night trying on the wigs. My dad looked hilarious! My best friend from high school, Eleza, also came to visit from Chicago for a night. We went out to check out all the new bars. Of course we ran into someone from high school.. weird cause she didn't recognize me with the wig- something which I always forget. Feels the same to me, ya know!

Well miraculously my mom started getting better on Monday. Her lungs were clearing and the doctor predicted that she might be off her vent Tuesday or Wednesday. They also were reducing her sedation. All I wanted was for her to be off the damn thing before I left. Well she wasn't. That's probably what bothers me the most. I went to see her yesterday morning and she actually opened her eyes! I made her a picture collage and so I got to show her that. She most likely won't remember me being there which is sad, but at least I got to see her getting better. She looked better- the swelling had gone down and her lungs were only diminished in the bases which was awesome! She didn't respond much while I was there except she shook her head at the nurses when they asked her if she had any pain. It was nice to see her eyes open and know that she at least somewhat knew I was there.

So I got home yesterday with little sleep and after a 2 hours delayed flight. (Never fly through Ohare in the winter or spring). I went straight to bed and slept for almost 24hrs (with the help of some ambien). When I awoke there were at least 8 missed calls from my sis and dad- apparently my mom had a mini-stroke. Exactly what I was worried about the whole time. I guess they did their neuro check and she had reduced grip strength in her right hand, as well as an inability to raise her right foot. She also was tracking her eyes to the right. They did a CT scan which showed a small stroke in the left hemisphere in the Wernicke area. There was also a lot of inflammation. The Wernicke area (I remember this from psych classes) is the part of the brain that processes speech. So the docs and all of us were really worried that she may have problems understanding language. They were confused, however, because usually strokes in one side of the brain produce deficiencies in the opposite side. They ordered a MRI scan and as of right now the neuro doc hasn't told us the results... My dad and sister did say that earlier she had some left sided weakness as well which had resolved a little. She also could track her eyes to the left. So she sounds like she's doing better. My sister went in and was talking to her and she responded by trying to speak a little . She also was moving around a lot and could dangle her legs. It's unclear whether she has language deficits because she won't be able to speak for a week or so because her vocal cords are pretty swollen and inflamed from the tube. I remember how that feels- I was on a vent during my 3 hours surgery and the next day I was hoarse and it hurt pretty bad to swallow and speak. I wonder what a week and a 1/2 feels like it... My sister thinks my mom will recover just fine after seeing her this morning. I love the positivity- DAD YOU SHOULD be more positive! ;) My mom got better fast and so I think she will recover functioning soon. The only thing she will have to worry about is the fatigue and I have no pointers about that except maybe stealing some Adderral...

So that's my current update. I flew home to see my mom and she will be soooooo pissed that she missed me. I guess I will have to fly her out! I totally want to sue the ER doctor for not doing a chest xray. They could have caught this so much sooner and maybe she wouldn't have even had to be admitted to the ICU. Fuck that. Doctors can be so cocky. Cover your ass. The Urgent Care clinic I worked at sent anyone with a bad cough to get an xray even before they saw the doctor!
You would think that if someone is dizzy and losing cognition that it would alert them to the fact that her cough is serious! Make me want to be a better practitioner. I think that's what I have learned the most from all of this and from my own experience being the patient. Get advice and consult with other practitioners because it's so easy to make mistakes and only think inside the box. And make sure you are available. At least I am getting something from all of this.

I think my luck is on the upside. Finally. It seems to come in threes and this whole mom thing completes the series. (I'm counting our rental house going under foreclosure as number one). The last bout of bad luck started at the same time in 2007- Within 3 months I got kicked out of school, kicked out of my house, and let go from my job... I should totally play the lottery!

Oh and speaking of good luck- when I got home I had a pile of medical bills (which finally came).The first letter was from Basic Health insurance saying that they had looked over my MRI request again and approved it! It was denied previously because Country Doctor didn't send them all the required information. This had started a world of worry because that was actually the ONLY thing that I had asked my primary care doctor to refer me too- Everything else I self-referred, including the surgery which they COULD deny if they were assholes because it wasn't pre-approved. Well I opened at least 3 more bills that showed that my insurance had been billed for all the specialty services and tests that I had received. I guess the lifetime limit on the insurance was only $1500! I'm guessing without insurance this whole thing may be $100,000 so that was awesome too. Finally, the best news was that the SCCA had approved my application for charity care. They determined that they would take on 100% of my responsibility towards my bill on June 25th. I guess that means anything that I didn't pay by then. How awesome is that! I don't know exactly what that means- like will they pay for stuff now- but that is still awesome news! I'm hoping that it will pay for the surgery with the 20% coinsurance because the UW is linked to the clinic. Otherwise that bill is going to be enormous!

Well I am starting classes tomorrow again and so I gotta study. I feel pretty good right now. Monday is treatment # 3. It's not for sure because if my counts are low than I will have to delay it. I missed my blood test this past Monday and so I'm not sure what they are. I will probably get another tomorrow. I'm supposed to talk with the doctor after the 3rd treatment so that will be good. She wants me to do radiation and another surgery to remove my uterus and I have decided not to do both. I guess I don't understand the point of irradiating my whole abdomen when they don't' even know if the cancer is still there. How do you target a few little clear cells? I probably will get another CT scan though which will tell me. They only did my abdomen and pelvis last time which I think is stupid because it could be anywhere considering it traveled through the bloodstream. I'm going to demand it. Not that I really want to know. I haven't asked about my CA-125 results as I don't really want to know those either. I will get them on Monday regardless.

Well wish me luck. I will write more now that I'm back on the computer for school. Break was sure nice without my cellphone on me and very little email checking! So nice to escape technology sometimes... (although TV was a dominant factor at home).

Amber

new school plan

So I have pretty much felt like crap since Monday. Studying for finals was awful. I was so tired and had so much information to retain and it just made me crabby and more miserable. I ended up going to my final on 3 hrs of sleep which was awful but at least I passed!

I had a meeting with my profs after the final and turns out they had designed an alternate program for me so that I could finish. Awesome cause during the past couple of weeks I have been wondering how I would be able to do it- I was already so behind in clinical hours and I was just able to go for 1/2 days. I really don't think I would have been able to handle another quarter- especially as the effects of chemo were accumulating... And because it is an intense, consecutive program- I would have to take a year off instead of just a quarter. So fortunately, I have a new plan: next quarter I just do my two lecture courses and not clinical. Then I can relax a little more during the hardest parts of chemo- and avoid all the germs swimming around the clinics. Instead of doing my final practicum this summer like my classmates, I'm going to restart clinicals as if it were spring quarter. Then I can do my final practicum and graduate at the end of the fall. Sounds good to me! I'm going to miss going to clinical but I know that I'm going to feel a lot better in the meantime. I don't think I could have taken another year off....

post-chemo ughs

Ok now I'm feeling crappy. I'm not really nauseous but my stomach feels off. My ring finger on my right hand is numb. My underside of my right knee cap aches and both sides of my neck are sore from the port. I've been popping Percocets which helps a little, but I can't sleep on my favorite side. And of course, I'm fatigued and have no appetite. Except for my roommates' choco-peanut cookies and my power smoothies. Somehow I have to study for finals but I just want to lay around. Damn you cancer for your horrible timing...

Pic of my Powerport, i.e. third nipple

I took these right after the surgery and forgot to add them- the first one you can kind of see the vein (which i can palpate) sticking out. It's not a bruised now but I still have the steri-strips on

PowerPorts

The PowerPort* Implantable Port is a cylinder with a hollow space inside that is sealed by a soft top. It connects to a small, flexible tube called a catheter. When a special needle is put into the soft top of the PowerPort* device, it creates "access" to your bloodstream, meaning that medications and fluids can be given and blood samples withdrawn.

Several distinctive features that can be seen and felt help to identify the special design of the PowerPort* device for power-injected CECT scans. These features include a unique triangle shape and a unique triangular arrangement of three bumps called Palpation Points on the soft top of the port.

For power-injected CECT scans, the PowerPort* device is used with a needle designed especially for power injection called the PowerLoc* Safety Winged Infusion Set.