Chemo 4/ Follow-up visit

Wow, I guess I lost interest in this for awhile. Sorry guys, I know people are looking for updates. Well now you're gonna get a long one because it was a pretty important day.

Well Monday I had round 4. I also had an appointment with the my gyn. onc- the first time since I began chemo. I was looking forward to this appointment for awhile because I had gather up a bunch of questions to ask over the last few weeks. Most importantly, I wanted to see what her plan was for my next step of treatment.

Monday morning I got a ride to my appointment thanks to a helpful roomie and was ready to discuss my future. It started off with a quick bimanual exam, which the doc said was perfectly normal. Relief #1- although I haven't had any signs or symptoms that would indicated there was a new mass. I also had her check a few other things out: since I was diagnosed, I had noticed some other abnormalities on my body- just small weird things for which I could use some peace of mind that they were normal findings. Sometimes before I fall asleep I lie in bed and do a self-check of lymph nodes and bumps. I can't really say that I'm being paranoid, because it was doing this that helped me go to the doctor in the first place. (This is also a great time to do your breast self-exam- as I always recommend to my patients). Anyways, I had noticed a small lump or nodule on the right side of my thyroid. It moved when I swallowed and was somewhat soft- which I know is a good sign. Also, I had noticed recently that my tonsillar lymph nodes were bigger than normal. Furthermore, I had two small bumps on my scalp which were pretty noticeable now that I have no hair. When I ran my finger over them they kind of moved with the skin. I don't know how else to describe them. Finally, the last thing I noticed was a small fatty lump on my back near my hip bone- right below my tattoo. Alone these things wouldn't normally concern me too much, but oddly all of these abnormal bumps are on my right side- the same side as my original tumor. It is frustrating because I don't have enough clinical experience with abnormal finding to know if these are benign irregularities or serious signs. After all, I have felt nothing but normal thyroids, and most people have swollen neck nodes most of the time. Anyways, I asked the doctor about all of these things and she had a hard time even feeling them. She said that they were normal lymph nodes, including the thyroid node. The thing on my back was a lipoma or benign fatty tumor. This was somewhat of a relief, although part of me is still concerned. After all, I had brought hard pelvic nodes to her attention when I first saw her and she has said those were benign- and I ended up actually having cancer (although I don't know if those nodes were even involved). So I asked her when I could get the once thing that WOULD give me peace of mind- a full body CT scan.

The doc said that she originally did a CT of my pelvis, abdomen, and chest- which apparently included the area up to my thyroid. This is because ovarian cancer usually spreads to the pelvis, then abdomen (usually bowel omentum or lining), and then chest/lungs. After that, it would show up along the lymph chain- first in the nodes next to my sternum and between my breasts, and then the ones above my collarbone. She checked these during my exam and they were fine (plus I check all the time) She looked at the CT report again while I was in the exam room, and noted that the radiologist had not seen anything suspicious in the thyroid. She did remind me of something that which I had completely forgotten since the first time we talked- the last CT did show that I had something near my esophagus- a 2cm mass. The radiologist had noted that it looked benign so I figured that there is no point being concerned at this point. If it shows up again then I can undergo a scope to go down my esophagus and investigate the tissue further. In any case, she said that I am scheduled for a CT after Round 6- and this time it's a full body one. She didn't want to do it earlier because apparently the contrast is hard on your kidneys and she doesn't want to increase the demand on my body more than i already am.

She then asked me how chemo was going and I told her that I was having minimal nausea, bad fatigue, and neuropathy in my fingertips. The neuropathy immediately concerned her. She said that most people don't have this symptom until after the 5th or 6th round. Unlike what I had been told previously, some people do not completely regain sensation in their fingers. With my young age, she decided that it was best to switch my Taxol (the one causing the neuropathy) to another similar drug which I believe is Taxotere. This drug does not cause neuropathy, and as a bonus only takes 1 hr to infuse as compared to 3. So I got out that day around 2pm rather than 6. However, I was informed of a rather disturbing side effect: some patients have extreme water weight gain- often to the point that they are so swollen that they don't even recognize themselves in the mirror! Luckily my nurse said that the Dextamethasone (steroid) that I have to take can counteract this effect. And guess what- 6 days later and no weight gain!!!!

Side note: I actually just looked up this drug and now found another worrisome side effect that I'm pissed I wasn't told about: apparently patients on this drug can lose their finger and toe nails. WTF?!?! In young people the incidence is about 25% so maybe I will be lucky. It sounds so painful! People suggest bringing in ice bags during infusion to put on your fingers to prevent it- I definitely will have to remember this. I can't believe they didn't tell me!!!!...

After making the change we talked about how the chemo was working. I didn't have the last results from my CA-125, but she has my lowest as being 8. So far so good. My counts were still low all-around (hemoglobin, white and red cells, platelets) but not too low to delay treatment or require extensive safety measures. Then we talked about the next step. Her next step was to do a hysterectomy using the fancy DaVinci laparoscopy machine- meaning that it would be an outpatient surgery with only a few small incisions. I immediately told her no: I intended to keep my uterus as long as possible. This wasn't advised, and she commented that the surgery would be beneficial in that it would offer a second look into my pelvis to possibly detect any changes not picked up by the scan. While this would be normally be a great strategy, I said that I simply wanted my uterus and so she accepted that. She then started talking about radiation. Radiation was not usually the standard of care for ovarian cancer. However, she had consulted with several other oncologists who agreed that it would be an appropriate step to take considering the aggressiveness of my cancer and it's quick spread. I know I have said that I do not want radiation, but I heard her out. I just didn't get the point- if she took out all the tumors, then what would the radiation be directed at? A lot of perfectly-working normal tissue and maybe a small few rogue clear cells. She clarified that although she took out some lymph nodes, she had left others that at the time showed no evidence of cancer. So the radiation, in fact, would be directed at the those nodes that she had left. I told her that what I was worried about was my uterus- as well as how the radiation would effect the normal functioning of my other organs. She said that some of the side effects of radiation after surgery is that it can destroy some parts of the bowel that may have been cut. Thus, the worse case scenario is that I would need more surgery and removal of parts of the bowel. It also can damage the outer tissue of the uterus making it unable to function properly. There were more targeted kinds of radiation that might spare more normal tissue, but she emphasized that it was important to not "box" yourself in, and be sure to get the immediate area around the lymph nodes or else it would be ineffective. All in all, her solution was to refer me to a radiation therapist at the end of my chemo so that I could discuss my options. Without radiation she couldn't be assured that I would be completely cured- with it she said I had much better odds.

And what is cure? Apparently it is being free of growth after 3 yrs. Shorter than what I thought. I think I have changed my mind and may give radiation a chance. Depends completely on what the radiation therapist has to say.

So after this lengthy discussion I had one more thing that I had been waiting to bring up since day one. Why was there no option to save my eggs? People have always asked me that and it was even an option on Grey's Anatomy! There was definitely no option pre-surgery when I signed away my ovaries. And so what did she say? Well, first of all she had no thought in her mind that I had cancer in the first place and that she would have to take the other ovary. It was a last minute decision and so I reluctantly agreed that it was a good choice considering how removal may significantly increase my chances of cure. Plus, chemotherapy would damage the other ovary anyways. Secondly, I don't know the validity of this, but apparently only a few hospitals in the country actually do egg harvesting. I would think that the University would be one of these but who knows. I was kind of confused on what she said after this, but eggs have to be prepared and matured before they can be frozen- usually with fertility drugs to increase the amounts of viable eggs that are released. The procedure is also much more effective if they are fertilized first- not really an option for me at this time.

I found an article on the issue if you want to check it out:
http://www.newsday.com/news/specials/ny-enovary02,0,6004064.story

So I guess I can deal with that. Ashley- I'm still gonna hit you up for your eggs in a few years so be prepared!!!! Take care of those babies! ;)

Well it's Saturday afternoon now and I am beginning to feel myself again. Fatigue this week was it's usual. I slept a lot, but got in a day of yoga and a day at the gym. At yoga, I wussed out and wore a head wrap after debating whether to go bald or not. It's HOT yoga and so I got totally sweaty and my cap eventually fell off during a move. I knew of course that this would lead to SOMEONE saying SOMETHING after class. So as expected, a quiet Asian girl approached me and stumbled through the question of "what happened? why are you bald?" I told her it was chemo and then said something that I didn't expect: that she has just finished 8 rounds herself five months ago. She then said that she had noticed my port (how could you not?) and showed me her's (which of course was small and almost unnoticeable compared to my giant green-blue tinted third-nipple tumor) She said I was strong and she was impressed with how I could do yoga during my treatment. We both agreed that the mind relaxation was helpful. I didn't catch her name but I was glad that she was the one in the class who had brought it up. In any case, I left the studio with something else on my mind: why does she still have her port after 5 months? Do I really have to keep that damn thing in so long after my treatment? Argghhhhh I hate it i hate it i hate it.

Free Cremation!

I got this awhile back and it's been on my fridge ever since. Apparently in addition to being 65 and eligible to be in the AARP (I get notices all the time), now I am getting junk mail for end-of-life services. Pretty morbid, eh? Just what a cancer patient needs for their self-esteem ;)

Now about me

Oh so I forgot! While I was home my sister and I got matching tattoos! We researched forever what we wanted- we knew we wanted something that meant 'strength'. We eventually came across the Adinkra symbols of West Africa. These symbols originated from Ghana and were hand-painted onto hand-embroidered cloths that were used by royalty and spiritual leaders in ceremonies and rituals. We found one for strength and then at the last minute decided to get another one that symbolized love.


Strength: (looks like a turtle to me)

WAWA ABA "seed of the wawa tree"

symbol of hardiness, toughness and perseverance

The seed of the wawa tree is extremely hard. In Akan culture, it is a symbol of someone who is strong and tough. It inspires the individual to persevere through hardship. :

Love: (obviously the one that looks like the heart)

ODO NNYEW FIE KWAN
"Love never loses its way home"

symbol of the power of love

Anyways this was both of our first tattoos. It definitely hurt like getting an injection for 25 straight minutes. Not fun. (Of course, I will get another one anyways). I love the way it looks though and now it doesn't hurt at all. I did ask about getting my scar tattooed- one guy told me that I should wait 2 yrs! He said he did one after 6 months and it started to open again.

I think these tattoos have so much meaning after all the events this year. You definitely have to be strong to get through this. This has definitely been trying for all us, especially my sis and dad. And as for me, I have chemo tomorrow and I am just annoyed. Earlier today I was starting to plan my week and getting in sometime to study and work in the garden when I remembered the chemo. Dammit. Now I'm gonna feel crappy and waste a week of my life. Ugh. It's just annoying. As soon as I feel fully recovered I have to get infused again. Tomorrow morning I am also talk to my doctor- the first time in 3 months. We are going to talk about the plan. I have no idea what that plan may be, but I guess it all depends on whether the chemo is still working. I want her to order a full-body CT scan. I would just like to know that it hasn't spread anywhere else. For some peace of mind. . .

Surgery Bill

Just got my surgery bill and I'm kind of surprised it's not more:

Daily service: 3 days x $2,382= $7,146
Pharmacy: $2,126
Pathology Lab: $3,295 (which I'm pretty sure I was already charged for this)
OR Services: $9,551
Recovery Room: $1,220
+ Other (Med-surg supplies, labs, drugs)

= $27,289

Mom update

Oops I haven't written in awhile! What's new....

Last week I flew home to Illinois again to see my mom now that she is awake and talking. She was moved to the rehab unit for a few weeks. When I first visited it was a complete turn-around from when I visited last! She was able to sit up in bed and pretty much was just like my old mom. I really couldn't tell a difference in how she spoke or in her personality, for which I was totally relieved. Throughout the week I saw her get better. She was eating a little more at each meal so they finally took out her gastric tube. She said this hurt quite a bit and it definitely made it hard for her to get in and out of bed. At first she had a catheter in, but then in the middle of my visit they took it out for a trial- only to find that she couldn't control her urge to go. This freaked her out because she thought she was going to have to have another surgery or have a catheter indefinitely. The docs reassured her that this was somewhat normal, and that her bladder could be retrained. Well the next day when I came in she had already retrained it!

She has lost a lot of muscle tone and it is still hard for her to stand or walk for long periods of time. She still has to use her walker although she is able to go a little further each time. She spends at least 5 hours a day doing therapy, which includes exercises with therabands to work her muscles, cognition exercises to work on areas such as memory and computation, and speech therapy. I didn't get to see her in therapy, but she showed me her daily log in which she had to write what she did that day, who visited, what she ate, etc. Her hands shake a lot so she also has a little ball of pink silly putty that she uses to build dexterity in her fingers. My dad and I were playing with the putty a bit- we all were cracking up because I guess my dad had wet hands from using an alcohol swab and so when he was kneading it his both of his hands ended up entirely pink!

My mom had plenty of visitors besides us, and her room was filled with flowers and cards. The nurses were also really good to her, although I always joked that they probably drew straws to see who had to have her as a patient that day. She is a total pain in the ass! She used the call button for everything- and when she couldn't find it she would just yell out the nurses name until they came. I spend a good portion of my visit trying to either convince her not to call the nurse or actually physically holding the call button away from her. I was trying to keep her independent, which was frustrating because she wanted help with everything. If she wanted to move up an inch in bed she would call (she was entirely capable at this point of doing so herself), or if she had a totally medically-irrelevant question. She even called just to introduce the nurse to me. We had to keep telling her- "MOM the nurse has other patients!" Ridiculous. She knew she was a pain in the ass to. I bet you those nurses argued every morning who would have April...

She gets to go home on Monday- tomorrow actually! I think she is going to have some nursing help at home, because she isn't entirely independent and is at risk for falls. My dad working on getting her disability because she won't be working for a very long time. She is just going to be too fatigued. Plus, she has been officially been diagnosed with Post-traumatic stress disorder a result of the whole incident. She has anxiety and panic attacks almost every night. I asked her whether she could hear me and what it was like when she was sedated on the ventilator, and she said it was all one big nightmare. She could hear us, and we just became part of her awful dream. Basically, she doesn't want to talk about any of it, especially any mention of the events in the ICU. It doesn't help that she had to be cooped up in a sterile, white hospital room for a month as well. She did tell me a little about the morning she went to the hospital. Apparently when she was driving to work, several people had reported to the police that she was swerving in the lanes like she was inebriated. She had even jumped a few curbs. She made it to work somehow, only to find that the cops had been chasing her, and had come into her store to track her down! I guess that's when a co-worker drove her to the hospital. Crazy...

The rest of the time I was home I hung out with my sister and her boyfriend. It was my sis's b-day and so it was nice to celebrate with her even though she was super stressed from studying. I always seem to come home right before an organic chemistry test... It was OK though because I had studying to do myself. I also got to see my old high-school buddy in Chicago while I was home. I haven't really gone out in the city so that was fun, especially after a Cubs game! All in all, it was a nice relaxing week and I was so happy to be able fly home knowing that my mom was alright

there's some humor in cancer

The bills are starting to come in

I thought I would post this since I was telling my classmates...

These are some of the costs of my treatments and tests:

Bloodwork:

Comprehensive Metabolic Panel: $125

PTT: $45

MG and Phosphorus Assay: $54 each

Automated Hemogram: $95

Thromboplastin Time: $67

CA-125: $106

Procedures and Tests:

Office consultation with specialist: $320

Pelvic Ultrasound: $270

Chest X-Ray: $216

CT Scan of chest and pelvis with contrast: $1637 each

Port Placement: $6345

Anesthesia for 3-hr Exploratory Abdominal Surgery: $2052

Pathology Consult in Surgery: $285

Pathology biopsy: $136 ea. (I had at least 8)

1 round of chemotherapy: $3591 (listed as pharmacy, IV therapy, Med-surg supplies, chemotherapy-IV, drugs/detail code)

No worries... My insurance covers most of it and the Cancer Center is supposed to pick up the rest. Thank you nursing school for making me get health insurance!

feeling better

This weeks been much better- I bought a new bed so I am no longer on an air mattress with a hole (I had to blow it up every night and before I took a nap). I think that contributed a lot to my fatigue because now I feel a lot more energetic and rested. I also picked up hot yoga again. I thought it would kick my ass, but I didn't have to sit out more than once which is about the usual. It felt great to stretch and release. In any case, I feel good now. The tinglies are also a little better

I finally talked to my mom as well. My dad has had her cell phone all along, and so she was unaware of my calls even if she wanted to talk to me (and I just realized today that she had a hospital phone- duh). I made my dad give her the phone and we talked for a bit. She said she can't stand being in the hospital, complains about everything and is basically the worse patient ever (and knows it). She doesn't want to do her physical therapy and apparently she asks for the nurse or the doctor every chance she gets. I told my dad that I bet the nurses fight over who has to take her. She has had tons of visitors which is great. I asked her about being sedated in the ICU and if she could remember anything about the experience. She said that she didn't want to talk about it because it upset her. Basically she said the whole experience has made her rethink her life and now she wants to be healthier. She also said that when I come visit next week that I can help her with her therapy. That will be interesting... I will kick her butt into shape! I'm used to physically conditioning little gymnasts so I'm going to have to be a little easier on her... Not that she'll listen to me anyways ;)

Quote and Tattoo Ideas

Not sure if I already posted this but I love this quote:

‘Life isn’t about how to survive the storm, but how to dance in the rain.’

I'm going to make it a tattoo. Not sure what writing to use....

I also need to find something to tattoo over my scar. Send me your ideas!!!!
So far, here's what I've got:
- zipper
-barrel of monkeys
-footprints to a manhole in the navel
- buttons

I want to incorporate my belly ring or at least the navel into the design

Running out of titles....

Not much to say lately. I'm trying really hard to get back into the swing of school but it's getting hard. My mom is doing ok I think and has just been moved to the rehab floor where she has to do exercises for 3 hrs a day. She's stubborn and doesn't want to cooperate, so I think it's going to be a long 3 weeks. I still can't get her on the phone, and it's starting to bother me...

I'm feeling great for the first time in a week. I can definitely feel the cumulative effects of the chemo. My fingers are still numb and it makes me pretty clumsy. The other day I was at the store and dropped two containers of soup from my basket when they started to roll out. When I grabbed them I couldn't really feel the plastic and so they dropped to the floor making a huge mess. It was totally embarrassing because I had a full basket and I dropped one container 1 foot from the aisle, and then again at the register. What a mess....

I also am still having balance issues and kinda lose balance when I stand up from sitting. I had a pretty bad day Friday as well. For once I had left my happy positive place and was feeling really down. I don't know if chemo is supposed to mess with your serotonin, but i feel it has been. I feel fine now, but Friday was the first day in a long while that I was depressed and frustrated with all this shit. Chemo is wiping me out with the fatigue and I'm only HALFWAY done. Granted the whole mom-thing has increased the stress 1000% and making it worse. Plus I'm going out of my mind with boredom at home. It takes tons of energy to get out (although once I'm out doing something with friends I'm fine) and so I'm not motivated to leave. Seriously, people need to drag me out of the house! This is a call for help- I'm totally willing to hang out if someone wants to do something during the day!!! Anything!!! (Plus if anyone wants to be my study partner or gym buddy, I need some major motivation to work on school stuff and workout!

I'm back in my happy place- mainly due to extra sleep. I really wish I had clinicals at least one day a week to combat the boredom. I feel out of touch with school with class only once a week. I guess I could be working on my thesis/project but that's a slow process... Right now I am planning for the summer and trying to fill up every weekend with some kind of festival or camping. Seattle summers are good for that. I just need something to look forward to!

I am going home to visit my mom again this Saturday. I'm totally homesick from all this family crap. I do feel like I am closer to my family more than ever though. Closer to a lot of people. I never really thought I had a huge support network in Seattle and elsewhere, but I guess I do- and when I really need it. It's nice because I am talking to people that I haven't seen in ages. And I don't really care anymore that it's because of the cancer. Anything is better than nothing. I'm so thankful for everyone- I don't think I could do this without such supportive people around me!

I'm 1/2 Way Done!

It turns out that my mom is doing ok today and is talking a lot more than ever. She has been moved to a regular unit and is mostly complaining about the boredom. She still has a feeding tube which runs at night, and then she eats normal food during the day. I guess so far she has some bites of sandwich! In any case, friends and family have said that she doesn't seem as bad as I was thinking, and that there are minimal cognitive deficits so far. YAY!!!

I've got the tingles in my fingertips- all of them this time. Yesterday the bone pain began again- same old places- under my knee cap and along my shins. I'm not nauseous as long as I take my steroid and Compazine, which are making me pretty tired. I've been trying to get chores and errands done today and yesterday but I keep doing stupid things like forgetting to bring my money to get gas... I'm just all-around spacey.

I've got two new pictures- one of my new red and black wig! I love it and people comment on it where ever I go! Thanks to Ashley for that one!














Also I just wanted to say thanks for all the support I've been getting. I really really appreciate it. Last week I got the cutest package from my old gymnasts in St Louis. I taught these girls gymnastics for 2 years before moving here, and I still try to see them whenever I visit the area. Now some of them are 12 (rather than 6&7) and one is even graduating high school! Anyways, they sent me a box with a cute little Build-A-Bear bunny, homemade cookies, and a book of homemade cards. Even better, they made a video of themselves doing gymnastics and telling me a little about what they are doing now. Oh it was so cute that I cried when I read and watched the cards and video! Thanks so much girls- I love it and I MISS YOU ALL!!!

So here's a pic I snapped of the front of the big card:

Chemo #3

I almost forgot last week that I was scheduled for chemo today. It wasn't a big deal when I went through it either. At 9am I got a ride, got my blood test and a line started from my port, and waited to be called to infusion room #19. For some reason I always get the room right across from the nurses station, which is always sooooo loud. It's never any good gossip. It's not that I want to listen in on their HIPAA violations- I just want to hear about some interesting patient or see how the doctor's and nurse interact with each other. Instead most of them were concerned with their new electronic medical records system- which of course my nurse had no experience with. I guess she had been sick last week when they implemented the system and now had only used it for 2 days. She still figured most of it out but had to ask a bunch of people.

When I got there I waited for about 30 min for the blood results to come back. I made sure this time that I was well above the cutoff- although the nurse told me that it is generally safe to get the chemo if the count is 99 like last time. She said that it was probably better to concentrate on killing the cancer and taking a Neulasta shot, rather than missing a week because of a slightly low neutrophil count. I got a printout of all the labs and my liver function was normal as well as my chemistry. My white blood cells were low but at 150 which was fine for chemo. My hematocrit and hemoglobin, and protein were also low- which is probably why everyone has been commenting on how pale I was (I'm normally pale, live in sunniless Seattle, and have been wearing my dark-colored wigs so what do they expect!) What was interesting, was that I had gotten a blood test on Friday- which showed my white and red blood cells to be significantly higher. I was starting to think 'what the hell did I do to myself this weekend?' but then the onco-nurse came in and reassured me that this was most-likely due to the Neulasta shot wearing off (usually at the end of 3 weeks). She also said that from now on I had orders to get the Neulasta while I was doing chemo. I was confused because I was never told of this order so I had to clear everything up. I like this place and these people but I'm still frustrated with the communication process- all I want to know is my lab results and when I have appointments but that keeps taking so long...

I spent the whole day there until 5pm just eating oreos and watching TV/napping. I argued to not get the high Benadryl dose and won, but they gave me this other antihistamine which gave me a headache. I talked to the chaplain again, but mostly about my mom and how I was dealing with it. Which of course wasn't all that well. I just want to be in Illinois right now... I also questioned the nurse about the whole having to shave my legs thing, and she said that the reason that I still have leg hair is because that hair just doesn't grow that rapidly. That's what I thought. So weird though- it's like the hair on your head is racing to reach your toes.. at least mine is- I swear my hair always grew 3x as fast as everyone else's! So I still have to shave my legs, but I have been noticing thinning of my arm hair and my eyebrows. I REALLY want my eyebrows! Sucks cause my eyes are so itchy that I have to touch them all the time! Come on follicles- don't make me a freak!

Well that's all for now... Check out this shirt!

Mom update

I wanted to post yesterday but of course our internet was out when I got home from the weekend- I did a random trip to Orcas Island with my friend Melanie for an evening. It was great to get away from all the anxiety I was having. We stayed in a cute little cabin off the beach and spent the time exploring the island culture. I went crabbing for the first time and caught 20 crabs! I felt retarded because I wasn't catching any for the first 30min and Melanie had so many! That's what I get for growing up in Illinois. I remember telling my dad later that I knew nothing about water life and his response was: well you know a lot about corn! Well dad, who cares?!!! It's not like there are millions of activities to do in a corn field except get lost...

Anyways, I was still getting updates about my mom and it was like a roller coaster ride because of how things changed from one minute to the next. I'll try to report the best I can for her friends/my family that's reading this, but obviously I'm not there so this is all by word of mouth. My mom needs her own blog... Especially since I definitely get a different picture of her condition from what my dad says versus my sister. Can't wait to see what she has to say when she can read this

She got an MRI which revealed that she had a hemorrhagic stroke (meaning that it was caused by bleeding/broken vessels vs. a dislodged clot from elsewhere in her body) on both sides of her brain- a moderate-sized one in the Wernicke area (language-processing center) and a cluster of bleeding on the other side that was affecting her right side/hand. I'm not sure who initially said it was hemorrhagic, but I suppose it was the neurologist who has been MIA for the past few days. I would attribute the bleeding to the heparin- it's an unfortunate consequence from trying to find the perfect dose- it's prescribed to prevent clots and embolytic strokes but can end up leading to uncontrolled bleeding... Anyways this news freaked me out and I've been pretty anxious ever since. My sister and dad both said that she seems confused a lot. When they showed her the picture collage I made, she couldn't seem to be able to read the "Get Well" words and seemed confused and unable to identify our pictures. I guess she is talking a bit, and mainly keeps saying how bored she is. Don't blame her one bit considering she's been in the ICU for over two weeks! Apparently she was not swallowing well but everyone was unsure of the cause- it could either be from the vent tube or a neurological defect. They are now considering doing a G-tube that feeds her through a tube implanted directly into her stomach. She did pass her dysphagia/swallowing test so they may wait off on that for the next few days. My dad also said that now she can move her right side pretty well and is trying to get out of bed.

My dad thinks that my mom is really depressed because she hasn't taken her meds since admission and is probably going through withdrawal- thus why she is so spacey and out of it all the time. I don't know what to think way over here in Seattle. I just have to wait because all the signs of neuro defects could be caused by depression, drug withdrawal, fatigue, or the fact that she has hasn't eaten properly in awhile. And not being able to speak well makes it even harder to assess. My dad first said that the nurses hadn't noticed any cognitive dysfunction. Now the doctor thinks she has expressive aphasia, because she seems to have difficulty forming words (really this form of aphasia is a motor deficit caused by damage to Broca's area rather than Wernicke). Either way, I wish I could get good news that stayed good.... I'm still mad at my dad because the other day his cell died and he called me from my mom's phone. That was a BIG letdown ;(

Well, that's all that's been going on - nothing about me is even an issue anymore. That's why I'm saving my discussion about my chemo today for the next post....

CA-125

I finally got my results back for my CA-125 and it was 11 on my last draw. Before that it was 42, and pre-surgery it was 400 something. So it's definitely going down which is great news!

Wig ridiculousness

Accessing the site

Hey for everyone accessing my blog:

I've heard complaints that people can't be added as a follower- let me know if you can't so I can figure out what's wrong. I know that I have more than 8 followers!!!