Hospital Stay in August 03 (craniotomy, chest tube, and first cycle of topotecan and Cytoxan)
8/12/03: Text from Update on Liddy page. (photo taken soon after the surgery) Believe it or not, I was smiling for this picture. A number of people have commented about my hair; they only shaved a one inch strip from one ear to the other. And, then they only removed two pieces of skull, which they put back with titanium clips.
8/15/03: Too much has happened, and so little that I remember. On Tuesday, I had a craniotomy; it probably was an emergency one even tho we knew it was planned for a few days. I'm not sure when it started, but it definitely started Saturday evening with me paging my oncologist since I was getting these weird intense headaches which would be very brief. She said something like "As long as you aren't vomiting, there's no need for you to go into the ER." As soon as she said that, I developed nausea and started to vomit. So, we left for the ER. Dad met us there. Keohan had called in for us, describing what she wanted done. The emergency MRI showed that I had 2 nodules (i.e., brain mets), both in the frontal lobe. (The masses were golf-ball shaped, and 5.5cm and 4cm big.) It turned out that they were were putting pressure on my frontal lobe, and causing me weakness on my right side of my body and confusion. And, they caused the vomiting, of which I had 4-5 episodes. And, in the end, the steroids weren't able to keep the swelling under control.
Enough about before the surgery... I came thru rather well. (The surgeon was the same one who did my biopsy back so many months ago. He specializes in both peripheral nerve tumors and brain surgery.) It seems that I am continuing to improve. I barely notice the right side weakness, and it seems that I have regained the skill of counting backwards.
Well, what is in my immediate future, treatment wise? I have a chest tube in which is working on removing a pleural effusion from my left lung. A chest tube is one of the more painful things that you can have done. It seems that it will take 3-4 days for the chest tube to drain completely, and then we will pack it full of talc, hoping for scarring so that the fluid can't enter the space again.
And, there is another brain met that wasn't reachable via surgery. And, there still are the lung masses...
8/16/03: Based on today's CT chest scan, the doctor is suggesting a bronchoscopy to determine why the left lung isn't responding to the chest tube as expected. The brain surgery was cake... the chest tube on the other hand is difficult. It is painful, seeming like it won't be successful, and loud. (Due to the sound of the suction, I'm having problems hearing my visitors, and due to my weak voice, they are having problems hearing me.) This past week was an eye-opening experience for Tom... there's no doubt in his mind that I might die from Ewing's. So, he will be taking some weeks of family leave, and I hope we'll be able to take some road trips. (Tom wants to take 12 weeks, I want to revisit the decision after 4 weeks.)
8/17/03: We finally got the orders right for a walk. (photo, photo) Mom and Dad celebrated their 40th wedding anniversary with all of the local kids bringing them out to eat at Artisenal, and they dropped by the hospital with Grandma Shriver for a quick visit for me.
8/18/03: Julie updated her tumor statement: Attention Tumors in Liddy's Body: We read to you an eviction notice NOT a relocation notice. You have been caught trying to spread yourself into another part of her body. Sarcoma, did you think that we would not find you hiding in the cerebral cortex or the occipital lobe of the brain? Nice try!! But I repeat, YOU HAVE PICKED THE WRONG HOSTESS!! We have cut you out and we will continue to defeat you!! Stupid sarcoma! Liddy isn't going anywhere!! Her defense is overpowering your offense! Sarcoma, repeat after me: encapsulate, shrink, disappear, encapsulate, shrink, disappear, encapsulate, shrink, disappear, encapsulate, shrink, disappear. Any questions?!! Bon Voyage Sarcoma!
8/20/03: The staples in my head got taken out at 6am this morning. (photo). My days are passing slowly in terms of drug-induced hazes or in terms of slightly pain days when I'm just not ready for the loopy feeling of the pain meds. I'm not complaining, but it would have been nicer if there was some pain med out there that didn't make thinking so difficult. In fact, one of the things that I find difficult is updating my web page. So, where are we? I still have the chest tube in (hence, my use of pain meds). They have done one treatment with bleomycin, where they put 60 ccs of bleomycin into the chest tube, and then have me position my body in different positions for 2 hours so that the medicine could get to all parts of the pleural effusion. They had planned to do a second treatment, but I don't know if they will since I ran a fever last night, probably from the medicine. So, the chest tube might come out today or tomorrow. My physical exam is still disappointing (i.e. the doctors aren't able to hear lung sounds over most of the left lung), but they decided not to do a bronocoscopy due to the little information that they would get from it. One of the many scans that I have had done was a CT chest. This showed disease progression. So, we have to change drugs again. I will hopefully be having appointments with a couple of radiation oncologists. Since I still have the tumor in the brain, we might need to involve a radiation oncologist who specializes in the head. (Most chemos don't go into the brain, so we would have to change my drugs if we were to think that chemo is the approach.) Tom, Mom, Dad and I think that the big one in the lungs might be able to be shrunk with a little radiation, and Dr. K's response of "It's too close to the heart." just isn't keeping us happy anymore. So, I think we should meet with someone who might do this radiation.
So, it wouldn't be right for me to discuss my hospital experience without mentioning the 2 worst experiences. The first was the day that the chest tube was put it; this was the first day of the blackout. In fact, I think the fact that the doctor was using the stairs was the first evidence that we had there was a problem. There were 3 doctors (2 observing and 1 doing the procedure); they let Mom stay with me (to hold my hand) while they setup. They did the procedure right in my room, cutting between two of my ribs, making a small hole for the tube. Then, the tube was secured into place. It hurt when they put the tube in (the head observer guy asked the guy doing the procedure if he could push it in a bit farther and that hurt; it caused a cramping situation). I asked the doctor putting the chest tube in about pain meds and he said that I don't have to worry about that; he would write for something. The head guy asked what I had used after surgery. Since I didn't need any pain meds after surgery, I responded with that. Soon after the procedure was done, they asked all visitors to leave due to the blackout (they wanted to have an accurate count of the number of people per floor just in case there was a fire). Within a few hours, it was obvious that I was going to need help at making the time past, so I stood up beside my bed. This made my machine fall down. I immediately paged the nurse, but she didn't come after 15 minutes. I could hear the fluid leaking out of the machine, but couldn't tell if it was the lung fluid or the water. (It was dark in my room.) Tom and Mom picked that moment to call; they ended up calling the nurse's station, and getting a nurse that way. The nurse set the machine back up, and taped it to the floor.
This began the second worst experience. As they were taping it to the floor, I asked how was I supposed to use the toilet and the answer came back you can't. No orders were written for the tube to be clamped. The nurse left and I called her back with the call button, it was answered after about 15 minutes. At this time I reiterated to the nurse that I still needed to use the toilet. She said that she would page the doctor and she left. After waiting another 30 minutes I rang the call button again and this time once a nurse responded, I was given a list of choices, one being a bedside commode. And the nurse went off to get me one. After waiting for 30 minutes I pushed the call button again and the nurse says she can't get me a commode and she leaves. I call again and tell her I still have to use the toilet. She asks if a bedpan on the chair would work. I tell her that would be wonderful! This time she actually came back and set me up with a bedpan on a chair. So 3 hours after my first call to the nurse I was able to pee.
8/21/03: The chest tube seems to be a permanent feature in my chest. I received my third treatment of bleomycin (photo). The surgeon who put it in seems to want to leave it in until it produces less than a certain amount of fluid, and mine continues to produce way more than that amount. A volunteer dropped by the room and offered "art therapy"; Mom and I designed a bracelet for Isabel (photo). I had a dressing change of it which caused so much pain that the nurse gave me pain meds (normally, one asks for them) and I hadn't been asking since I wanted to remain coherent. My doctors are suggesting a stem cell rescue done twice; once with thiotepa and once with melphalan and etoposide. We met with the doctor in charge of the transplant program, and he walked us thru the timeline.
8/22/03: We learned that the new chemo will be 5 days of in-patient (topotecan and cyclophosphamide). So, I will not be going home until next Friday/Saturday or so; that seems so far away. The chest tube is out!! It came out today at 4pm. It didn't hurt much in coming out. Within 5 minutes, I was biking on the stationary bike in the hallway. I will never complain about walking with a pole again... what a feeling of freedom. The ENT came by to look at my vocal cords thru a scope thru the nose; the left one isn't moving correctly, but he thinks it will straighten out in a few days. I really dislike this weak voice that I have; it seems that everyone whispers around me. Tom and I watched a few episodes of Star Trek on my laptop; it was so nice to get back to something that seemed normal.
8/23/03: Mom and Dad visited in the morning. I did a little biking (8 minutes or so) before they got here, and some biking once they got here. (biking photo) It will be quite a while before I'm up to my 45 minutes - 1 hour of riding. Tom was with me most of the day. He read from Harry Potter to put me to sleep. Kit, Wee Teck and Ms Yan, and Bruce and Isabel visited.
8/24/03: We found out that my oxygen saturation goes very low when I'm walking. One of the doctors thinks that this is due to the disease. It somewhat explains my not being able to walk very far. The same doctor wrote orders that I'm not allowed to bike! We promptly got those changed. Lots of visitors today: Matt in the morning, Michelle in the afternoon (we played scrabble), and Daniel and Juan Carlos in the evening.
8/25/03: I biked two sets of 10 minutes each. We spoke with Dr K; first time in a week. A couple of decisions were made. We will wait until the radiation of the head guy is back from vacation before doing anything with the head. We don't have to make the decision yet about stem cell rescue. We will continue with the planned topotecan and Cytoxan for at least one cycle. And, there was other news, the type that Dad is best sharing: notes from Update on Liddy page.
8/26/03: I biked one set of 20 minutes. I was ready to continue, but Tom wasn't ready to let me. I'm back on the heavy pain meds; tumor pain in my belly. So, it was kind of hard to hear from my doctor that she thinks I only have months left. I had always been hoping that I would be in good health my final months. (I'm not sure from where I got this idea.) In fact, my oncologist said "Just 4 weeks ago, she was hiking the Grand Canyon." with an implied "Look at her now." I'm convinced that she saw me on a bad day... maybe I had been trying to walk too far that day. Or my red blood cells decided not to live in my checks as they normally do.
8/27/03: I biked for 25 minutes. I think I'm starting to reach the point that gives me peace. The ENT showed up again, and talked about the two procedures that we could do which might help with my voice; the voice is low on the list of priorities. Kit visited, as did Mom and Dad in the morning, and Matt and Karen in the evening. Tom was with me most of the afternoon/evening. We made two appointments to see radiation oncologists next week. One is something Tom found that uses your breathing cycle to determine when to irradiate the lungs. The other is someone suggested by Dr K to consider looking at radiation to the big one. I tried portable oxygen today; it did make walking easier. Plus, it made talking easier; I had started talking in phrases, and I could move back to sentences.
8/28/03: I had a brain MRI in the am; here's Dad with the results Update on Liddy words. I grow good cancer! I found out that the whole brain radiation might not work... I didn't know that. I thought if you zap cancer with radiation, it died. Since I have been able to make chemo-resistant cancer, there's a chance I can make radiation-resistant cancer. So far, I have had no remarkable chemo side effects. I will look more like Lance Armstrong with my incision on my head; he also had brain mets. I biked for 30 minutes (photo, photo, photo).
8/29/03: I received a blood transfusion today; my hemoglobin was at 7 something, with the bottom of the acceptable range being 12. A friend complimented me on my "keeping up with my exercise program". Since this is in part in error, I thought I would straighten it out publicly. If I exercise enough, then the nurses don't fight me when I refuse the heparin injections; these injections are some of the most painful subcutaneous injections I have ever received. Plus, they leave painful lumpy bruises. (The heparin works as a blood thinner and works to keep blood clots at bay.) Of course, there is part of me that sees the exercise bike across the hall, and can't wait to get on it. My jaw hurts; we found out that the neurosurgeon cut my jaw muscle when he did the surgery. The things that you find out after surgery... I biked 30 minutes today.
Copyright © 2003 The Shriver Family: Last modified: 01/06/04.