Friday, September 17, 2004 3:08 PM CDT

I feel sick today. Everything hurts a lot. Very hard to breathe. My computer screen swims because of meds. Why is it the second day home is the worst? Hope tomorrow will be better.

Wednesday, September 15, 2004 6:25 PM CDT

Back at home! Very tired, but pain isn't as bad as last time. In hospital it was really awful, the epidural didn't take, so I was in terrible pain, and the morphine made me really really sick. Yesterday they switched me to Delauded and I felt a lot better, so good I got to go home this afternoon, yea! I felt bad for my roommate, I kept her up with my shrieking all night that first night, then they moved me to a single. I couldn't help it, the it really hurt. I'll know now to make sure they don't give me mophine anymore, I was so sick I could not even drink water! I'm glad I'm better now. Keith is bringing my favorite dinner ever, Chicken Modina, from a place by his house. It is plain, but tasty still and it comes with these yummy noodles.

So, officially there is no more visable cancer in me. There is a 50 percent chance there are still cells by my sacrum, but no more visable cancer, and I'm going to think positive.

Unforutunately I can't move out yet, because doing so will make me lose my insurance, and they are giving us a LOT of problems with double bills and stuff. My dad has been calling people and arguing all week. The university of chicago bills are fine; it's the Rush bills that are a big problem. They are still trying to bill us for stuff from January and said they are going to refer me to a collection agency! They are screwing up, they aren't submitting it right to my insurance so they keep denying things, and we keep telling them what they do wrong, but they keep ingoring us. sigh.

Ok, food is here, I'll stop them. :)

Monday, September 13, 2004 1:28 AM CDT

Well, we're leaving for the hospital in 3 hours. Ask me if I have slept. I'm getting tired now, so maybe I can get a little nap, but I'm nervous. I would say I hate surgeries, but who doesn't? I'm starting to get worn down, like I need a vacation from all this.

A good thing is that this is the last cancer surgery. There are two more surgeries in the works for me, but one is an outpatient one (getting the port out) and the other is a maybe...dealing with my non-functioning bladder. But no more 'let's remove cancer' surgeries. Hopefully this means the cancer is gone. I've got a 50% chance of that. I'm thinking positive!!

Well, I'm going to try for some rest. I hope this surgery goes well.

Saturday, August 21, 2004 9:33 PM CDT

Got back Thurs...very quick! Feel pretty crummy, though. I was very sick today, ug. I wish i could take a shower but I can't get up the stairs. I feel so gross. Other than that I'm handling this ok. Hard to type, so I'll write more later.

Friday, August 13, 2004 11:06 PM CDT

Surgery is scheduled for Tuesday August 17th at University of Chicago Hospital.

After talking to the surgeon I feel a lot better about things. He's a very intelligent, trust-inspiring fellow. And he made my parents get out of the way so I could have my wheelchair up by the counter so he could talk to ME. I can't tell you how much that means to me. I really do like U of C a lot. If you have to have hospital-y stuff going on, I would recommend it. I'm nervous about surgery, but not terrified. So that's good. I have to be there at 6:15am on Tuesday. That's good, because when surgeries are later in the day it is just excrutiating waiting. This way I'll get through the crummy presurgery stuff when I'm all sleepy. Always helpful. And I found out they will do an epidural for me, whoo! I hated the epidural the last time, but only because of where it was, I couldn't move my remaining leg, so it would freak me out when I'd wake up and not feel EITHER leg. But everything should be ok for this surgery, I know I *really* won't want to feel my lung right after this one. I'm going to be positive and believe this will be my next step to a CURE. I don't know how realistic that is, but it can't hurt to think positively!!

Wish me luck! If I'm in the hospital for more than a week, I'll have Keith come update this for me. Hopefully, though, I won't be in very long.

So after this I rest for six weeks then get the other side done (which should be easier he said), then see about what to do with my bladder, and then done! Hopefully the cancer remaining (if any) will not grow and Keith and I can go apartment hunting. And this spring/summer we're talking about getting a kitty! Yea!!

Friday, July 23, 2004 6:01 AM CDT

Things are in flux; not sure what is going to happen. I'll write more when I know. The margins for my surgery weren't clear, so they aren't sure about doing lung surgery for the mets there (leaning toward no, but the doc is still consulting people.) I really hoped I'd have an 'end date', a day that I could plan on moving out of my parent's house because I'd no longer need their post-surgery care. Keith would be able to get a job without worrying about missing something important in my treatment, and I could start getting disability (my insurance right now prohibits my receiving disability, even though I haven't worked for more than a year. It's good insurance comparatively, since no one else will insure me, but it sucks that it's so expensive...there's no way I'd be able to pay for it on my own.)

I'll write more when I know more. The doc at University of Chicago called and said he would be getting better records from Rush about the radiation I received. That might make a difference. People in my support group have recommended special types of radiation, which is something I'll ask about. I know it's not hopeless, but after a year of being helpless and at the whim of all these treatments, I was hoping I'd get a chance to have a bit of an adult life for a little while. I'll be 24 in December...will I still be living at home? I miss living at the apartment with Keith so much. Living at home is making me a little crazy...

Hoping for answers soon...

Wednesday, July 7, 2004 11:30 PM CDT

I wish I was a NERD...and I might have a good chance to become one! (pasted from my personal journal)

I saw the absolute cutest thing today before we left to go to U of C. I was hobbling out to the car, when I just happened to look to the left, and right there was a duck. Of course I said "Quack!" at it, which made it move along. And as it moved out from under the bushes eight tiny little puffballs waddled quickly after their mamma. Oh my goodness, they were adorable! And when the mother duck stopped abruptly at the sidewalk, all the little babies, lined up in a row, smooshed into each other, but they never fell out of line. I wish I'd had a camera. It was just too cute.

So my dad and mom took me to U of C. We had to stop at Rush first to get a pile of copied records and scans (a grand total of 1 hour of trapsing around the damn hospital and professional buildings to get each part of my files). We ran into my physical therapist from the surgery. I sort of recognized her, but hey, I was really doped out back then. She was really happy to see how healthy I looked. She isn't much older than me, I think, probably late 20's. As we were continuing on (my dad pushed me in the wheelchair) I remembered she was the poor soul who I screamed directly into her ear over and over every time she helped me sit up (goddamn it hurt!) I didn't mean to, I remember that, I just couldn't help it. It hurts just thinking about it. :( aw, that hurt. *tries to think soothing thoughts...babies, springtime, ocean breezes...*

So we got to U of C, which means we drove a bit down Lake Shore Drive, which is just beautiful when it's a nice day like today. Lake michigan sparkled; I forget it is so vast, and so near! The oncologist I met was amazingly wonderful. This is the second time I've done the second opinion thing at U of C (the first was about my pelvic tumor) and both times I have been so impressed with the knowledge and professionalism and, well, sense of caring these doctors have. He took more than an hour and a half to make sure we understood everything, from why they did chemo at Rush in the first place, to why it wouldn't be a good idea now.

Basically, he said that I am one of the lucky people for whom surgery could put me in the NED category (on my email list for chondro, they joke they are really NERDs...NED is no evidence of disease, NERD is no evidence of recurrent disease, 'cause chondro is a recurring bastard.) This was a first for me, hearing this...I just kind of said "huh?" So he explained.

My lung tumors have not grown in number since January. !!!!! This is a shock. The only growth has been to existing tumors, which is one of the best senarios you can get and still have this fucking cancer in you. The very best was if I had dedifferentiated chondrosarcoma, because that responds to a specific chemo regimine, but he said mine did not appear to be so.

He was *very* disappointed with the pathology done at Rush and he is sending for slides so that one of the top sarcoma pathologists in the country for sarcomas, who works at U of C, can analyze it and give info like how much of the tumor was necrotic, something incredibly important that the Rush path report didn't even mention. He was shocked that the Rush path report was so incomplete. It made me feel good to know this doctor was going to go out of his way to get the best analysis possible for me. He really made me feel confident that he knew what he was doing.

He explained so clearly what should be done, and I have to say I believe him. He is the first doctor to do that about this lung stuff. (Insidentally, it was the meeting with Dr. Hayden, also at U of C, back in Novemeber that made it clear that I would need the hemipelvectomy, and he was the first doc to do that.) Ok, so here's the deal. Chondrosarcoma is made completely of cartilage. This means that it has very few blood vessels and it is a hard tumor (not fleshy). This makes it virtually immune to chemo. That doesn't mean chemo can't influence it, but it is very little influence for such a high price on the rest of my body. He doesn't recommend doing any chemo at this point.

He did recommend doing the thoracotomy. Which is the crappy one sucky surgery, a week in the hospital, three weeks at home, then the second sucky surgery. I was reluctant because I knew that if new nodules kept popping up, we'd just have to keep doing this over and over 'til I had no more lung life to cut up. That was not acceptable. BUT, this doctor explained that my number of nodules has not increased, meaning that if we cut out the existing nodules, I'd be very likely enter that NED category of patients, which would be amazing. He explained why this is better than radio frequency or cryoablation for me...neither of those are as reliable as the surgery, and since I am a text book case for the surgery, he said I should seriously consider the surgery.

He offered to forward my information to the thorastic surgeon at U of C. The doc said if he had to have surgery done, this guy is exactly who he'd want to do it. High praise. He said that it is possible that this doc will see something that would make surgery a bad option, but from what this guy sees from his review, I'm an excellent candidate.

He explained how every cancer treatment has the goal of extending life. For chondrosarcoma patients with lung mets, the thoracotomy can extend life exponentially--I would have a chance to live cancer free, for a normal life span. He said he couldn't guarentee anything because he is not a surgeon, but from what he knows (which was quite a lot, he has a particular interest in rare cancers) I have a good chance at full recovery. Wow.

I am hoping this bubble doesn't burst, that the next CT doesn't show something awful, but if things continue on the pattern they have been on...it's almost too good to hope for. Now that I have had the surgery explained to me by someone who actually understands chondrosarcoma (the other guys were not clear on many points, making me doubt them), I am pretty confident that surgery is the way to go for me. It will suck, but no one told me I could be free of disease if I did it. I have to take that chance.

Though I think they will have to sedate me pretty quickly upon arrival for such a surgery, if they can do the surgery...I've got hella PTSD when it comes to that crap. Just thinking about being put under makes me brake out in a cold sweat. :( But I just have to keep focused, like I did for the hemipelvectomy...this is going to make me better. And really, I feel better than I have in more than a year now, even with phantom pain. Which is pretty amazing. So I will have faith...and hopefully this surgeon at U of C believes as strongly as the oncologist does that I have a good chance at beating this thing.

Friday, June 25, 2004 0:43 AM CDT

Well, my lung surgery was cancelled because the surgeon decided at the last minute that he thought it would not help enough to compensate for the risks involved. So I've been waiting on this cryosurgery guy in Detroit. He should call tomorrow. I'm so afraid he will say no. Then I'll have to find some sort of clinical trial or do the surgery anyway even though it will be difficult and won't really help much. Sigh. This couldn't just be easy, could it?? Well, here's hoping Detroit is a 'go.' I'm crossing my fingers...

Friday, May 28, 2004 4:20 PM CDT

Well, my lung surgery is scheduled for Thursday. I am, obviously, not looking forward to this. But...after this surgery I'll have one more to go (for the other lung) and then, theoretically I'll be as cured as I'll ever be (still have some tiny tumors in the lungs that are too small to operate on). And that means I can, in 2 months time, start living my life again. I've always thought Madison, WI would be a nice place to live. And it's close enough where I could come back to see doctors when necessary, but far enough away to give me some independence (well, Keith would come too, of course.) So much as I am dreading this surgery, the sooner it is over with the better.

Wednesday, May 5, 2004 6:10 PM CDT

Getting better!

I am now able to get up the stairs with help. I've been practicing hard with the walker and I'm getting so much more steady! I am even using the walker to get into the real bathroom next to my room and using the real toilet (which is a relief after all this time of camode usage.) I'm getting better at normal things like washing up at the sink and brushing my teeth there. My mom and I got me up the two flights of stairs to take a shower last week, but it was really difficult. It did feel nice to shower, though! It was my first since surgery. We are going to try again tonight, using some tips my occupational therapist gave us so I don't slip so much on the shower chair. Hopefully it will work out better.

I've got appointments with the Lung docs and the Bladder doc tomorrow. So we'll see how that goes....

Monday, April 12, 2004 5:43 PM CDT

Walking is getting a little easier! Each therapy session I take a few more steps before I need to sit, which makes me feel good (but sore, too!) The more I can do on my own, the better I feel.

I realized I never wrote out the whole story of things, so here goes (slowly, typing is still tricky--my laptop is great, but I only have half a lap, lol. ;)

It started in January of last year, my final semester of college. I had a little back pain that just wouldn't go away. Xrays showed nothing unusual, so nothing was done. It kept getting worse, so I saw a specialist in my area who prescribed stronger meds and physical therapy. This helped some, but come May I could barely walk without help. The specialist said to 'wait and see if it clears up.' By the middle of June I could hardly get out of bed, so I demanded an MRI at the suggestion of my boyfriend (of 7 years now!) Keith. The MRI showed an enormous tumor wrapped completely around my pelvis.

The MRI was on a Friday. Monday morning I got a call to come in immediately. The specialist said it 'might be' cancer, and made an appointment for Tuesday with Dr. Virkus at Rush University Medical Center, about an hour from our house. I got a lot of scans, and he said it didn't look good. The biopsy was on that Thursday. By the following Tuesday we got the results...chondrosarcoma, grade 3. The outlook was not good--chemo and radiation typically doesn't work on this rare cancer (about 300-600 people get it every year.) The surgery usually done for this would leave me without a right hip or leg, and at that time he said it was too dangerous to attempt. My lungs showed some shadows that were labled as metasticies. He gave me about 6 months to 2 years to live.

We decided to attempt a chemo and radiation regimine that is typically proscribed for osteosarcoma, a more common bone cancer, as it is rare for a person my age to have such a large tumor that was 100% chondrosarcoma. I did 4 months of chemo (I got surgery to implant a port in my chest to make it easier.) It was very difficult--3 days in a row of 6 hours hooked up to the medication and shots every night for 2 months. I lost all my hair and was very ill, but I got more mobility back, which shocked everyone.

We did 2 months of the next type of chemo, but all my pain came back. We did a month and a half of radiation, but at that point I could no longer get out of bed for very long, and I was very very ill because of where they were radiating.

By January 1st I had already gotten a 2nd opinion, and that doc said the same that Virkus at Rush said. I was crestfallen...the only option left was the risky surgery that neither doc was sure I'd survive, as my tumor now was creeping toward my spine (which would mean I'd be paralized if it got close enough) and it was inmesshed with my nerves and arteries there (which is why I had nerve pain down my leg in addition to pain in my pelvis and back.)

By mid-January, Dr. Virkus said we can't wait any more--I needed this surgery ASAP. I had only a day and a half warning, and the whole day before I wasn't allowed to eat (clear liquids only) and I couldn't leave the house. So I got basically 5 hours to use my leg to go out...

Well, everything overall went better than expected. They were able to get safety margins and even discovered two matasticies near my spine that they removed. Dr. Dermond, the plastic surgeon, was able to reconstruct a hip and (I quote) 'half a butt cheek.' lol, he's a character. I was in ICU for a few days, but I remember very little of that except I kept begging for ice chips because the tube down my throat made it scratchy.

They transferred me to the regular floor, but the bed HURT. They then tried a air matteress that was worse. Then Dr.Dermond perscribed a sand-air bed...it was perfect, no pressure on my insisions. I was in a lot of pain, they rolled me to my side twice a day for painful dressing changes and I would just scream and scream. Even with the huge amount of pain meds I was on, it was horrible.

The wound wasn't healing, so I ended up going down to surgery 3 more times, ouch. It was difficult. I was in the hospital for 33 days, and I only got to leave because my mom is a nurse and Dr. D. ordered me something called a woundvac that he showed her how to change instead of needing all those sucky dressing changes.

I have a hospital bed here at home, with a bar to help me pull up. I'm getting more and more mobile now--I can roll myself, sit up myself, and I just recently was able to stand with the walker without help, whoo! I can take about 30 steps with the walker without stopping, and I keep practicing all I can so that I can get enough balance to move to crutches. Then we attempt the stairs! I'm always very sore after physical and occupational therapy, but I really am getting stronger. One legged movement is a lot more tricky than I thought, but I'm making faster progress than my doctors had hoped.

My prognosis is much better now--I do still have some cancer in my lungs, but each nodule is less than 1cm, too small for surgery. We'll go next month to see if I will need chemo or what. I hope no more chemo. Ick. And my hair is growing back curly and dark--it's neat! I've always had blondish-brownish straight long hair, so this is quite a switch. :)

Each day I get a little stronger. I'm off a great number of my meds like the Valium and Zonegran (nerve pain drug) but I still need the anti-spasm medicine and I just cannot get off the pain patch. It is a durogesic Fentanyol (sp?) patch...I guess the 'street' name of this medication is 'china white.' It's insanely physically addictive, and I was on a high dose for a long time, which makes things harder. I get shakes and horrid withdrawl when we tried to stop it. Not sure how I'll get through that, I really hate the side effects, but withdrawl is awful and it just doesn't stop. I'm using half of the smallest dose patch now, and it keeps the withdrawl at bay for the most part. Hopefully I'll be strong enough to get through the withdrawl soon, but right now I can't afford any more days of no sleep and being so sick I can't eat. Hopefully soon, though, this patch is scary that my body wants it so badly even when mentally I don't want it. Ek.

Well, that's the whole story. :) I'm getting out of bed more now, about 3-5 hours total a day, which is nice. I'm getting awfully tired of my bedroom, and getting in the wheelchair and/or using the walker is so nice. I can't wait to learn to get up the stairs so I can actually get into the kitchen and go outside! Now it takes two strong people to get me up the ramp to go outside, too hard to do often, unfortunately. I did get to out out last Wed. after my doc appt--it was so nice! A great motivator to practice that walking, even when it makes me so sore.

I'm trying to keep a positive outlook, which is so much easier to do now that the phantom pain is less.
Still have a lot of 'phantom sensation' where I sometimes feel my leg, even though it's not there, kind of like 'pins and needles'...but overall I'm getting better everyday. :)

Well, I'm tired...so I'll stop. This is the longest I've been able to stay up on the computer so far, whoo! Soon I'll be back to my normal internet addiction levels, lol.

Tuesday, April 6, 2004 0:43 AM CDT

Still working at recovering...still pretty out of it, but I'm stronger today than even last week. Hard to type still, will reply to emails as soon as I am able :) Still have 2 tubes, making learning to walk w/ only 1 leg that much more difficult, but I'm trying! Hope to write more soon! Thanks for your support!!!!!

Thursday, March 11, 2004 9:21 PM CST

At home, very tired. Hard to type, write more later. Surgery went well, recovery is very hard now.

Tuesday, January 20, 2004 10:48 PM CST

My surgery has been scheduled for tomorrow morning. I will be having what is called a hemipelvectomy and hemisacrectomy, which is where they will remove the right half of my pelvis, right half of the 'sit bone', and right leg. The surgery can be anywhere from 3 hours to more than 8, so we're not sure how it will go. It all depends on if the tumor is 'stuck' to any of the organs it is pressing on.

Emotionally I am feeling shaken, but I know this is for the best. The cancer is hurting me, and if we didn't remove it, my life would not be much longer. I plan on living a long, healthy life, and this is the best way to do it. I have talked with a number of people who have gone through this same surgery--they have gone on to live wonderful lives. Some have even had children! I am trying to look at this not as a loss of a part of my body, but as the first step toward my cancer cure.

After surgery I will have about 2 months to recover before we see what can be done about the marks in my lungs. They are still very small, and the doctors believe taking care of them will be fairly easy. That is good news! We'll just take each step as it comes.

My mom, dad, Keith, and Keith's dad will be coming with to the hospital tomorrow. It is reassuring to have so much support. I know Keith's mom wanted to come, but she had to work (she is a teacher.) It is very weird to know that I will walk into the hospital on my own two legs, and walk out on only one (and crutches.) It will be a big change, but I'm ready to face it.

Wednesday, January 14, 2004 7:39 PM CST

Well, Dr. Virkus would like to do the amputation surgery in three weeks. He is going to talk to the insurance company to see if he can get them to cover it, it's that important to do it soon. I'm a little mixed over the news--I'm very very glad we will finally be getting rid of this horrible tumor, but the notion of losing my leg and hip are still very frightening! I know I will get through it, it's just going to be a big adjustment.

The chest CT showed more marks in my lungs, which isn't good. They are all smaller than 1cm, though, so we aren't going to worry about them until after the surgery. Then I'll probably get more chemo and some type of lung surgery depending on how they change.

The best thing is just to take this one step at a time. I know the road ahead is going to be difficult, but the goal at the end is worth it!

Tuesday, January 13, 2004 10:26 PM CST

This is my first entry here. I'll be filling in more information later, but for now the current plan is to meet with Dr. Virkus tomorrow. I had my chest CT to look at the marks to see if they have grown (hopefully not!) and I just had an MRI today, so we'll be talking about that. I left a letter with him concerning another woman my age with pelvic chondrosarcoma who had limb sparing surgery at MD Anderson in Texas. We will likely be talking about that tomorrow as well!

As far as my health goes, I'm feeling better. My tummy is still a little upset from radiation, but it's much better. My skin is looking pretty sunburnt, though! Hopefully that will start to fade soon. I'm still really tired, but I'm staying up longer each day, so that's good. And with the help of the wireless keyboard Keith's family got for me, I've been able to go on my computer, yea!

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----End of History----