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.

Chemo, round two

Ok so this blog is a major distractor. I would much rather write on this than study hypothyroidism... I've never been a really good about writing in my journal, but I guess this has a broader purpose.

Yesterday at 8am I arrived at SCCA to get my port placed. The doc who did was really cool- he showed me exactly where he would thread the catheter and took the time to examine my chest for the best placement. He was concerned about where my bra strap would hit the port and so ended up placing it way to my left side near my armpit. He did an ultrasound first, which was pretty cool because for once I actually saw what I was supposed to. At Planned Parenthood I'm supposed to be looking for the yolk sac pre and post-abortion and it's just this mini circle with a dot inside. The ultrasound of my ovary was just a big black blob. This ultrasound clearly showed my vein and my artery- I could see the valve in my vein flapping around, and in the artery I could see blood/cells flowing through it. Pretty cool. The doc also told me something vague about how Dr. Hickman (of the Hickman central line) liked the way that the carotid artery and jugular vein "kissed" or touched each other and I could see clearly that they did. After the US I was given a light sedative and pain killer and was moved to the operation table. They gave me an oxygen nasal cannula and placed the ultrasound machine next to the bed. I was draped on my left side so that I couldn't see what was going on- yet there was a hole cut out for me on the right so I could communicate with my nurse. I dozed off and when I woke up it was placed! But then because of the narcotics I started to get really really itchy and spent the next 15 min scratching at my neck. Apparently I can't have IV narcotics without this side effect- same thing that happened in the hospital. They called it an allergy, but I'm not sure if it is or if it's just a side effect. Well despite my plans to not sleep this whole time, I got 25mg of Benadryl anyways and began to space out. I looked at my chest and there was a small incision near my jugular and another one underneath my clavicle where the port was placed under the skin. The actual catheter is very close to the skin and feels like a hard spaghetti noodle going from my port to the vein. Basically, it looks like I have a third nipple. They got me a low profile one but it still sticks out almost 3/4 inch. And while it doesn't get irritated from my bra, I keep rubbing up on it with my backpack!

After the insertion I went to get the chemo. There they gave me a printout of my lab results. Unlike last week my hematocrit was slightly lower and my neutrophils were 0.99. I asked what the least amount you could have before having to skip chemo, and the nurse said that the numbers were fine and started the pre-chemo process. This time I took my meds orally, and because I had already had 24mg of Benadryl, I didn't have to have anymore. So this time I was able to sit up for awhile and do some crosswords, as well as eat my usual 8 packs of oreos. Of course eventually I put the bed down for a nap... I mean, I had been there since 8am that morning and had to stay until 6pm!

During the visit I asked to speak to my designated nurse. She came down and we went over how I could change up my meds to keep me a little more functional. She said that I could decrease my dextamethasone and skip the compazine. Sounds good to me! The chaplain also came in again and talked to me for quite awhile. This time I was more awake and actually didn't mind talking to her. She basically is like a therapist who comes in to chat while you are sitting there bored. Better than trash TV. She asked me how everything was going and how I thought about this whole situation. I told her exactly what I have thought since I was diagnosed: this is all a huge inconvenience. Just one more annoying thing that I have to get through while trying to finish school. Just like 6 months ago when I suddenly had to move due to my rental house being foreclosed. Just like taking a year off when I first started this program. Just like never having any money. Other than that, I don't really think about the bad stuff. Everyone tells me that I am so positive and taking everything so well. Well first of all, I don't think there is really any other way to take it. I can't sit around all day and give up. What I really think has given me so much strength is my mental illness. Since I was 16 I have had bipolar disorder- basically meaning that I constantly cycle ups and downs. I've been depressed for almost half my life, so I know when things are at their worst. But I also know that it always get better eventually. So that's 12 yrs of experience dealing with shitty times. Having cancer is just another shitty thing that I will have to climb out of. The weird thing is that I think I'm a more positive person now than I have ever been. I still have my usually rain cloud that follows me around (I think Eeyore and I have a lot in common) but it comes with a new perspective.

As for today, I woke up from a call from my nurse, saying that I actually wasn't supposed to get chemo yesterday because my counts were too low. Interesting since I specifically asked the nurse about the cutoff. Apparently it's 1.5 so I'm way below the limit. So to get my neutrophils up I had to go back to the clinic for a neulasta shot. Apparently it can boost my counts in about an hour. Anyways, I found some info on drugs.com:

Neulasta is a colony stimulating factor. It is a man-made form of a protein (amino acid) that stimulates the bone marrow and promotes the growth of white blood cells called neutrophils in your body. White blood cells help your body fight against infection.

Neulasta is used to treat neutropenia, a lack of certain white blood cells caused by receiving cancer chemotherapy. Neulasta is used in people with cancers other than bone marrow cancer

Other than that, I'm feeling ok- I am just taking oxy for the pain, a smaller dose of the steroid, and my usual handful of meds and supplements. I'm also trying to study, or was, until I got on this blog. Oh well. Perspective.

Ready for round 2

So not much is going on. I have a final next week on Friday that I'm worried about, and it doesn't help that I have chemo tomorrow. I figure I'll be out for about 3 days and then have a few more to study. I tried doing some this weekend but I didn't get too far. I also have about 10 late assignments to work on- I think I may be doing those over break :(. Oh well, I'll just take it one day at a time...

Tomorrow I get my port placed, for which they put me under. It also means that tonight I have use the special soap to clean my chest (chlorhexadrine I think?) and not eat anything after midnight. The plan is: wake up way too early at 7:45 for blood work, 8:00 have minor surgery; and 1pm-ish? start chemo. Nice long day of laying around, eating oreos, and visiting the bathroom about 20 times. I'm hoping they can get me a children's port, because I have no fat on my chest and it's going to be huge and stick out inches. No low-cut shirts for awhile I guess. It's ok though cause I'm a t-shirt gal anyways.

I'm starting to like the bald thing. My head gets super cold at night and so I wear a hat, but otherwise it's nice. It'll be great in the summer. Yesterday I wore my long, wavy reddish wig. It was awesome to sport full flowing hair for once. I was trying to figure out if I could pass it off as natural- nobody stared at me so maybe that's a sign? I was just happy to be able to wear pigtails again- I think that's the only thing I miss about my hair at the moment. A friend of mine suggest that his roommate henna my head. That would be awesome! I'm going to wait until it all falls out because right now it's still pretty patchy.

Altogether, I'm feeling ok. Adderral has helped tremendously with the fatigue- I forgot to take it on Thursday at clinical and actually was so tired that I had to leave early. That says a lot because I love working at Planned Parenthood. My tinglies are no longer noticeable, or else I have gotten used to them. I think I only had them for 3 days or so. Weird. One new thing that's driving me nuts is the orthostatic hypotension. Basically, every time I lean back to stretch (which I always do to stretch my newly-healed ab muscles), stand up quickly, or sit up from bending over (to tie a shoe or something) I get incredibly lightheaded and have to hang onto something to prevent myself from fainting. A few times I almost have. I've had low blood pressure my whole life and have fainted from it in the past- but this is pretty much every time. I want to start hot yoga again but I will have to take it extra easy so I don't pass out during a back bend and knock somebody out!

On another note, my buddy Adam that I met at the SCCA just finished his last round of chemo! Wish him a speedy recovery! He has a blog too that you should check out (he's the one who gave me the idea). The address is: http://adamsbulletinboard.blogspot.com/

Alright enough procrastinating and back to the books!

Pulling My Hair Out... Literally

Just a video for you all to see what it's like to lose your hair like this.....

Shave Day

So... as you can see- I have a big bald sexy head! Last night I shaved it all off and it feels great! It was about time- I had some bald spots yesterday morning and had to wear a scarf to the clinic. And I still need to wash my sheets (or at least shake them out) because there is hair all over. I was shedding more than my cat, and that's saying a lot. It feels good and our shave night was pretty fun. My friend John and roommate Juan had talked about shaving their heads with me awhile ago and so we all gathered in my living room for the big event. At the same time, another friend, Sean, was also shaving his head at his house, so the love was all around! The whole idea for John, Juan, and I was shave in steps to give ourselves the most ridiculous hairstyles we could think of- and to document the whole ordeal on camera. I was first and so they gave me 80s punk rock hairstyle with everything shaved on the left half of my head. We took some pics and then buzzed the rest off. It wasn't all that upsetting to see my hair go- it was all brown-rooted, and overdyed anyways. It did feel really bizarre to run my hand across my head though- 1/3 of my head was completely bald but I still had some rough patches of hair. Last night in bed it also felt pretty weird on my pillow- kind of scratchy and my head got really cold.

Anyways, John was next- he was used to shaving his head and was definitely game. We had thought about just leaving bangs on him- "bitch bangs" was the term we used i think.... - but then we got the idea to make a chin strap that goes all the way around your head. So we shaved a sideways mohawk on him that connected to his beard. He looked like a DJ with headphones on- either that or it looked like he had a moustache on his scalp. It was pretty funny. We joked that next time he should leave some hair around his ears so that he looked like he was wearing earmuffs.

Juan was last, and he had dreadlocks that he had been growing for a few years so I was pretty impressed he clipped them off. For him was did a "no-hawk"- or an inverse mohawk (basically no hair in a line down the middle of his head). It took a lot of work to clip those little dreads but the no-hawk was worth it! A friend later told me that we should have separated the lines a bit so that he looked like Mickey Mouse. Haha. After we shot some more pics, the two boys shaved the rest of their hair off. I swear the whole thing looked like some weird cult initiation. I just kept waiting for one of our prestiged Leschi neighbors to come to our door. What would they think....
Anyways, I think it was a blast and I'm really appreciative of the three guys for showing their support! Now we all have a sexy, maintenance-free new look!

Other than that, nothing much has been going on- This is my last week of classes and I have a finals next Friday. I also have chemo #2 on Monday- what luck! I guess I'm going to do as much as I can this weekend. I'm still pretty behind in my clinical course and I am short hours, so I may take an incomplete in that class. But I still need to pass my other two lecture courses- that's what I'm focused on. Lots and lots of information needs to get into my brain and stay in my brain after the 3 yucky days after chemo. I'm hoping to switch my anti-nausea medications or talk to my docs about medical marijuana because what I am was taking made me feel like crap. Crap as in feeling totally out of it. It's better than nausea, but I still think we could find a better med.

Oh yeah- I finally got a hold of my nurses and they gave me the results of my blood test- everything was absolutely fine- no decreases in hemoglobin, red and white blood cell counts, or platelets! I must be doing something right! I'm thanking the nutritional supplements I've been taking- I'll have to get to that side of my treatment in another post....

Hair Hair Everywhere

"Your hair is... everywhere. Screaming infidelities..." This song has been in my head for the last few days. So my hair is rapidly thinning. It's all over my coat, my shower, my pillow, my lap, other peoples' laps. I can pull out chunks at will. Tonight I was eating a bowl of rice and every time I brought the bowl up to my face to fork some in my mouth- a new hair fell into the bowl. Definitely annoying. I don't understand why all the hair on my head has to fall out. I mean, I haven't shaved my legs in like 3 months but all of THAT hair is still there. WTF?

Today I went to the SCCA to get my blood drawn. Of course I was an hour late because I forgot to change the time on my watch. No worries though- they can get you in pretty much anytime. The guy used my right arm cause my left arm vein is SHOT. Lil fucker still hurts. On another note, I can't believe that SCCA makes the patients pay for parking. What the hell? Aren't we going through enough!

After the SCCA I went to the American Cancer Society's wig bank. Apparently the corporate headquarters are here in Seattle or something. Or at least that's what the receptionist said. She was 25 and we talked for about an hour. Her mom had breast cancer and now that's why she works there. We talked a lot about medicine because she wants to be a therapist and I want to integrate psycho-socio consultations into my practice. Especially important with dealing with chronic illness. Anyways, she said that all their wigs are donated directly by stores (brand new) or are given to them by other cancer survivors. BTW- she told me that I was now a "survivor". Sounds weird to me- I'm not really free of cancer but I am alive so I guess that does qualify me as a survivor. The wig bank had 4 huge bins of wigs of all colors. Most of them were old-lady style or "mom" because they were short and curly. Some grey wigs as well (why would you get gray again if you were going to bother with a wig?). You can have two at a time, so I picked a reddish one and blonde one. Both were longer than my normal hair. For once I get to feel what's it's like to have thick voluminous hair! And red hair color that lasts! I can't imagine wearing them all the time but it should be kind of fun- new look everyday! They also had a bunch of hats and scarves so I took some of those. Not really anything good but enough to start with. There were definitely some good 80s ones with neon pink and greens!

Tomorrow is shave day. My friends John and Juan are going to shave their heads with me. We're going to make a night out of it: basically we're going to shave/cut in steps so we can take pictures of each other in stupid hairstyles- no-hawk, just-bangs, mullet, etc. Should be good for them because Juan has dreads and John has pretty thick curly hair as well. Mine- not so much. I'm not sure I will even have much by tomorrow! Anyways, I will be sure to the post our ridiculous pics!

Tomorrow may be a "No Hair Day"

The day has come! I just took a shower and when I was washing my hair a whole bunch fell out in my hand. It was weird because it obviously wasn't breakage- they were blond hairs with that inch of brown that was definitely from my roots! Anyways, I'm kind of amused. I showed my roommates by pulling out a chunk in front of them. It's amazing how easily it comes out. Shave day is imminent!

Another pic of me in the hospital

Wow! My dad sent me this since he was chasing me around the hospital with the camera- so cruel... I look more like a psych patient than one status post surgery. Anyways, this is my first walk I think...

Why I need a port-a-cath

So today I woke up with arm pain. More like an ache. I felt around and the vein that they had used for my chemo was now hard like a tendon and painful to the touch. Dammit. I was supposed to get a port-a-cath inserted to make chemo treatments easier (a port is something placed under the skin to allow for easy venous access) but they couldn't get me in before my first chemo. Now my vein is sclerosed. Thank god the port is going in the next round.

other than that- I have a newfound love for Adderral. Right now it's the only thing that can keep me awake and functioning for at least 6 hrs.

Treatment

"Clear cell ovarian cancer is particularly aggressive and somewhat resistant to chemo." that's what my doc said during our post-op appointment. Therefore it needs to be treated aggressively with chemo and possibly radiation.... The first line treatment for ovarian cancer is usually a combination of Taxol and Carboplatin. This is effective for 95% of the other types of epithelial OC- but it may not work as well as expected for my rare clear cells (clear cells are <5%>

Now what? Post-surgery

So I'm playing a little catchup here...

This is what happened when I got out of surgery:
I spent 5 days in the hospital where the nurses and residents at UW were awesome. My parents were staying with me and I had a few good visitors as well. I definitely slept most of the time- which is annoying because if you've ever been in the hospital they have to take your vitals every 4 hrs. More often if you have the epidural. During the night I just started sleeping with one arm out so that when they came in I could just keep my eyes closed and raise my arm to get the blood pressure. It was definitely interesting being on this side of the medical world- I remember how much I hated waking patients up to get their vitals. At least nurses aren't as bad as the residents- they usually come in around 5-6am in herds.

The stay was pretty uneventful. As expected, on day two I had to get up and take a walk around the unit. Because I had an epidural, my catheter was still in and so it got to accompany me and my IV pole. I'm sure my dad snuck a few pics of me strolling around with my pee bag. I remember it hurt only a little when I rolled over in bed, but not much else until the day the epidural wore off. Then I had some bad burning-like pain. But I had my PCA -personal "get-me-high" button to push when the pain started so that helped. Basically, I just watched movies on my laptop, saw a few friends, and tried to keep my dad from playing with the IV equipment.

I was sent home with 4-6wks predicted recovery time and an arsenal of drugs. I got xtra-strength Tylenol, Extra Strength Ibuprofen, Dilaudid (super narcotic), stool softeners, and hormone-replacement patches. Dilaudid, which is supposed to be an opiod stronger than morphine and oxy, etc worked pretty well for my pain but absolutely knocked me out at home. I would wake up, take my Dilaudid, sleep for 3 hours until it wore off, and then repeat. That's like 8 naps a day! I had to take the stool softeners as well to prevent the narcotic-induced constipation.

The hormone-replacement was another story. It's weird. I will be prescribing this to patients in their 40s and 50s- not at 28! But because my body has NO means to make estrogen without the ovaries, I have basically underwent immediate menopause. Now I understand why my mom cranks the AC down to 50 in the summer- the hot flashes are awful. I experienced my first one the other day and stayed up all night because i was too warm to sleep. The patch they gave me ended up being way too low of a dose- as it was meant for aging women who still have some residual ovarian function. Now I take a huge dose of 2mg (the previous dosage of combined patch was maxed 0.5mg) which is a little scary but definitely beneficial!

The hardest part at this time was that now I had to tell people that I actually had cancer. Everyone before had been reassuring: "oh it's just a cyst," or "I'm sure it'll be nothing". Now I had to make that awful phone call and tell them that actually everything wasn't alright and that now the bad feeling I had had all along was justified. Fortunately I got my parents to make some calls- they made some calls as soon as I returned from surgery which really helped. I definitely was in no state of mind for that conversation for awhile. Telling people was the hardest part of that first week. I would do anything for someone else to break the news. I didn't really care who knew. I just got really sick of the "Are you serious?" "How did this all start?" "What now?". This is where the blog comes in handy....

Hospital Pics and my incision

From the beginning: the long story

Plus.... I can tell how this all happened once and only once...

So here's the story:

Back in late November I started having aching low back pain and pelvic pressure when I walked. I also had some urinary symptoms: urgency, frequency, etc. At the time, we were studying women's health in school and had actually just done a case study on pelvic inflammatory disease. So immediately I was like BAM! that's what I have. But then I was busy and put off making an appointment that week. One week later, the pain was gone and things were normal again. But then I had a new symptom- my right hip hurt- a deep, achy pain that felt like it was coming from my bones. And it would be constant whether I got up and walked around or was sitting. Also, even though I wasn't particularly stressed about school, I had lost my appetite and starting feeling full earlier than expect. And the weight loss began...I was suddenly the weight that I had been in high school (when on the gymnastics team) So basically, what finally prompted me to go to the doctor were the red flags of cancer: bone pain with rest, unexplained weight loss, and the fact that I used to LOVE to eat and snacked all day. I remember sitting there on the futon at this time, doing my homework and making observations/jokes to my roommates that maybe I had cancer. We also joked that I had a tapeworm that I needed to keep in line. I knew that I needed to go to the doctor but of course this happened: with the move into the new house I lost track of some bills and ended up not sending in my December health insurance premium. How fucking ironic. I never had any health problems before. Now my coverage was inconveniently suspended in the very month that something was actually wrong with me.

Anyways, so on my birthday (Dec 10) I marched into Seattle's Univ. FREE health clinic to check out what I initially thought was an infection. My NP there was awesome and listened to my concerns. I was feeling reassured that I just had a bad infection until she did the speculum exam. Damn that thing hurt! And it never ever had hurt before. It was this point that I knew something was wrong and I think I started crying right there. This marked the beginning of almost 2 months of agony and anxiety about what could be going on with me. She then told me that she found a 8cm mass in my ovary and that she was going to do some blood tests and send me to get an ultrasound to see if it was a simple cyst. So I left feeling somewhat ok that it could be a cyst, but the thought of cancer never left my mind. She called a few days later with results that my platelet counts were high. This freaked me out as well. Having just finished up a course on women's health, I had two gyno books at my disposal, as well as lab interpretation textbooks. Really high platelets= possible sign of bone marrow failure (and from cancer).

All of this was awful timing because I was about to go home for Xmas break. But I wanted to get the US first. So I paid for the damn thing myself and got it right before I left. That was a scary procedure as well because the technician would not let me even peek at the monitor. Very frustrating for a medical student. She spend so much time in there that I thought I had other masses. I think i was feeling a little hysterical at this point because I requested some valium from the school NP.

Well a few long days late I got the results of the US: it was a 8cm solid mass with some cystic components that may or may not be located in the ovary. Solid= bad= not cyst. There were no other malignant-like findings, but with the size and consistency the reporter could not rule out malignancy. Those were the words I took home with me for my vacation "can not rule out malignancy". As pissed as they probably are about it now, I didn't tell either my parents or my sister what was going on. I just wanted to enjoy my Xmas. Plus everyone was already so stressed out- i knew that this would make it worse, even if I meant that I had to hide my anxiety and need to tell them. I did tell some good friends at home and that helped to calm me down. I remember leaving St Louis and Urbana feeling pretty good- I had had a great time hanging out with old friends and family- probably one of the best times I've had visiting. I did sleep a lot when I was there though. I think I woke up at 2pm every afternoon for those 2 weeks. My parents did manage to fatten me up a little bit too. My hip still hurt a lot and I know my parents wondered what was going on with that.

At home I was desperate to get in to see the gyno but because of the massive snow storm and Seattle's mismanagement the clinic hadn't been open all week. I was finally able to get an appointment with my PCP who ordered an MRI, and the gyno doc. I had the MRI first which was one of the most boring things I've ever experienced. You lay down on a table and the magnets rotate around you with blaring noise. It took at least an hour and none of the music stations they had for you to listen to were working. After the MRI I picked up the films and took them to meet the gyno for the first time. She did an exam and looked at the MRI and decided that laparascopic surgery was in need to remove the mass. She originally thought that the mass was uterine in origin and we had a long discussion about how much it would suck to have to have C-sections every time I got pregnant. I had always had this desire to go natural childbirth- with no epidural just like my mom did. Having a C-section would ruin that whole experience for me... Dr Gyno changed her mind when she got the results of my CA-125 blood test. The CA-125 is an protein found in ovarian cancer cells. The usual values are from 0-35. Well mine was 420. In pre-menopausal women it is not reliable as a diagnostic or screening test for ovarian cancer, but 80% of menopausal women with high values have stage II, III, and IV ovarian cancer. There are other causes for CA-125 elevations, but the values in these causes are usually much less than my 420. So basically another test that could not rule out malignancy.

After thinking about the MRI findings, CA-125 test and the possibility of cancer, I started wondering if laparoscopic surgery wasn't the way to go. With a lap surgery, my max recovery time could be a week and so I would miss much less class and clinical. But, if they did a lap and discovered that the mass was malignant, then they would have close (to reduce risk of releasing more cells into the body) and reschedule another abdominal surgery. Rather than go though all this surgery during a busy quarter I decided to consult with UW Medical and a gyn-onc surgeon. After meeting with me, she immediately told me that she could not remove the mass laparoscopically and that the recovery time would be 4-6 wks. I was devastated at this time because that would be a ton of missed school and recovery. But I wanted that tumor out, so I schedule my surgery for January 30th at the UWMH. She told me that there was a 50-50 chance that the mass could be cancerous at this point, but was thankful that they would be able to remove it early. She also came in with forms for me to sign about what should happen if they do find malignancy. The standard in ovarian cancer is to take the other ovary, unless the woman is of childbearing age. I remember signing the form that it would be ok to take the other ovary if it would be medically unsafe or if the cancer was particularly aggressive. Then I almost signed my uterus away, but my sister had told me that I could have some of her eggs.

So after step after step of malignancy not being ruled out- I finally geared up to call my parents. I had wanted to know the definitive diagnose before i told them. but i realize that this could no longer be possible without surgery, and they need to at least know that I was getting surgery. So I called them and it was awful- lots of crying. They made arrangements to fly to Seattle for my 5 day stay. I was upset because the one time I can get them to stop overworking themselves and take a vacation, it has to be to visit their sick daughter and her abdominal incision. Too bad cause I wanted to show them around and instead was in bed for 5 days.

Well I prepared for surgery by letting my professors and clinical sites know- weird because I didn't really know the outcome of when I would be back- just that recovery maybe take up to 4 wks. The night before I had to do a bowel prep which consisted of drinking 2 entire bottles of milk of magnesia. Ughhhhh. my ass hurt after that one. I spent more time on the toilet than doing anything else the most of the night. The morning of surgery I packed my backs with lots to do knowing that i would have a 5 day stay. The UW hospital was amazing, and I was totally impressed with the care. I met with the anesthesiologist who prepped me for surgery, and my surgeon who wanted to run through the plan. She said it would take about 3 hours max, and that she didn't think there would be any need to take the other ovary. Next thing I knew, I was being wheeled out to surgery and then what felt like moments late- wheeled back into the recovery room.

All I remember from the recovery room is whispering. People talking about me with concerned voices. The results of the surgery. At some point I asked for an epidural. I remember sitting against the side of the bed listening to a new resident get instruction from the doctor on how to place the catheter. It was taking way too long. From where I was I had just well assumed that she had no idea what she was doing. I remember crying here and everyone kept asking me "does it hurt?" No it didn't hurt- I am just scared because you are taking an hour to stick a massive needle in my spine and I am overhearing evidence that this may be your first placement. Finally when they got it in- I looked down at my belly and saw that the incision was twice the size that the doctor had anticipated. This was my clue that something had gone wrong. It also explained all the whispering from the nurses- I knew that she had found cancer.

A super nice resident came in later and gave me the most direct explanation of what they had found in surgery: The ovarian mass was actually 10cm, solid, indeed located in the ovary, and had pathology that showed it was malignant in nature. Therefore, the surgeon had decided to take my other ovary. Biopsies from the abdominal lining and adjacent structures were negative. However, just when they were about to close the surgeon was surprised to find a 2 cm metastasis to my para-aortic nodes. Apparently rather than spreading to adjacent tissues, the metastases spread through the blood stream and wrapped around the vena cava (makes me wonder if this would explain why I would get so light-headed when I stood up). Fortunately, the surgeon was able to remove the node and they were able to close without complications. The resident explained this all so matter-of-factly, yet had so much concern in her eyes when she told me that they took the other ovary. I asked her what my staging was and she said Stage: III (C). Basically in ovarian cancer that means that it has spread beyond one or both ovaries into the abdominal cavity or adjacent lymph nodes.

So after all that time my instincts had been right. It is so weird now- all that anxiety I had been feeling was suddenly released. I can accept cancer- apparently I just can't accept the unknown. The watching and waiting and not knowing was what was causing me so much distress. Now I actually feel a little more positive and much more relaxed.

Where it all began...

I got this idea to start a blog from a guy I met at the SCCA. We were both waiting to take our CT scans. It was nice to meet someone who was already going through treatment because this is obviously a big change in my life and I had no idea what to expect. But anyways, he has a blog to let people know what is going on and how he's doing day to day. Ya know, we get kind of sick of the daily "how are you feeling today?" It's not that I'm not totally appreciative of the support- I just never have any good answer to that question other than, "yeah, i'm tired again." I figure this way people can check out my status themselves.




Free Counter