Tuesday, September 29, 2009
Monday, September 21, 2009
Both shirts read "when all else fails I blame my sister"
Carly's hair cutting system:
Step one - take a pair of kid scissors to your bangs, on one side. Cut them short. It's fun watching the hair fall away, and fun looking at it in your hand.
Front view - looks pretty much the same.
Back view, not so much. But a valiant effort.
Carly is now back to short hair and bangs.
She is THRILLED with her new cut and so are we. I'm happy that it was her decision in the end; I think she just needed some time to come to terms with such a big change. The poor kid has been growing her hair out since age 4 1/2 so this was a big mental adjustment for her. Thank you Kimmy for making my girl smile!
Saturday, September 19, 2009
We got on a schedule, the staff and I... the nurse and PCA would come in at the appointed hour, and do a number of things, including: giving me an oral dose of acetaminophen and compazine, take vitals, flush my line, start the IL-2 drip, and infuse my line with demerol. I would then try to relax and sleep. During the first 2 hours, vitals were taken every 30 minutes.
Within 90 minutes or so of each infusion, I would need to get up to use the rest room.
Sidetrack here: One of the big side effects of IL-2 is water retention. The patient is being pumped full of fluids, and is encouraged to eat and drink whatever he/she can tolerate. They are also watched like a hawk as to what is 'produced' in the bathroom. To facilitate proper measurement, I had the lovely pleasure of having to pee into a 'hat'. It is a plastic receptacle that sits on the toilet bowl, under the seat, and measures the amount of urine produced. The thing is, there isn't much. I felt the urge to go at appropriate times, but rarely was able to send much to the hat. This was an odd sensation, and meant that I was in fact retaining fluids. It is not unusual for an IL-2 patient to leave the hospital 30 lb heavier, though luckily I was only up about 10 lb. This didn't surprise me since I sweated a great deal pretty much the whole time I was there.
Ok, so back to the routine. I would get up, and of course the air walking across the room is cooler than the air trapped in your blankets, so I would start to feel a chill. By the time I got back to bed, the chills (known as the rigors) would take over my body, so that my teeth chattered, with my jaw tight, and my body shook, especially my legs. I knew to call the nurse right away. I always got someone to attend to me in under 5 minutes, but that 5 minutes felt like hours. The nurse would shoot more demerol into my line and within a few minutes, I would start to feel a heat-like sensation radiate from my torso. Bit by bit, I would stop shaking and feel comfortable again.
I slept a lot, though never in big chunks as far as I know. I dreamed constantly, and they were weird, hallucinogenic dreams. In them, I would be interacting with people from my real life, talking to them though I couldn't get them to respond. I knew that they weren't responding because I was dreaming, but it was still odd. Often I would be holding, touching, grasping things that didn't feel 'right' only to find that I was holding onto my blanket or pillow. Sometimes I would ask questions of people in response to things I had been told when I would hear from family or friends. It was really, really odd, and the odd dreams only really just stopped about 3 nights out from leaving the hospital.
I experienced others of the usual side effects.
- loss of appetite. It went pretty much immediately. I knew that I needed to eat, but just couldn't. Several meal trays went back untouched, and other times I tried to take at least a couple of bites of each part of the meal. Hospital food is what we all expect, and I did learn that next time, I will request no gravy on anything. Since they are trying to keep the food as low-fat and low-sodium as possible, they use a fair amount of pepper especially in gravy. Yuck. On a good day a little pepper goes a long way with me. When I could barely face food, it meant the difference between getting some of the mashed potatoes, which were actually good, and smelling the pepper and putting the lid back on the plate.
- loss of alertness/weakness. The lack of food was not helping this one at all, and was the ultimate reason I stopped at 7 doses. As I got weaker, I couldn't think much, couldn't read, use the notebook that Jim bought me to use there, couldn't carry on a conversation of any length or depth, etc. People left messages on my mobile phone and it was all I could do to listen to them, much less respond to anyone, as sometimes the thought of having to press the required buttons on the phone was too tiring to me.
- diarrhea, which wasn't actually bad, probably because I was eating so little. Everyone asked about it continually though. Early on someone mentioned that they might want me to produce THAT in some kind of 'hat' as well, to check what fluids was I was losing. When I mentioned it to the NP though, she said "oh no". Thank goodness.
There is nowhere that I find comfortable to sit for any period of time in the hospital. I think this fuels my desire to leave ASAP whenever I am there. I can only sit/lay in bed for so long; the 'recliner' chair bugs me, the regular chairs bug me, and so on. And I hate trying to type on a keyboard while using the bed tray, so being verbose online while admitted... not possible, luckily for all of you.
An interesting silver lining, though: Since IL-2 causes blood pressure to drop, I didn't need to take my blood pressure medication while in the hospital. Also, my readings were lower than they would be normally on meds but the drop for me from hypertensive to IL-2 land kept me in the normal range. Nice little side benefit.
By seven straight doses, I was mentally and emotionally wrecked. I was ready to leave immediately (or as immediately as possible, considering patients need to be monitored for a day or so after the last infusion), have my port pulled and quit altogether. I talked to my nurse, who recommended I skip the next dose (6 AM) and continue at 2PM. I agreed but felt pretty certain that as soon as I started to feel better, I wouldn't willingly take another dose. Everyone at the hospital was really nice about it, expressing empathy for the roughness of the treatment. I had feared that I would be told I had to keep going, especially if stopping meant I would be leaving the hospital AMA.
Strategies for next time:
Listen to the creative visualization CD that was recommended by kidney-cancer-friend Angelo. I had it with me on the first trip but didn't listen to it until I got home. I enjoyed the imagery she used and plan to listen to it more frequently.
Put up more photos of family, friends, etc. to remind me what is at stake here... my life.
Have someone get me to eat a bit so that my weakness doesn't become my downfall. To that end, my sweet Jim has decided to spend the entire cycle with me at The James next week. The girls will stay with his folks, where they love being, and I will have my sweetie there to keep me strong. I need that a lot... I felt so much relief once I'd verbalized my desire to end my infusions, but felt very guilty/weak later. I know that I HAVE to finish this cycle. And if I am blessed to have a response, I will HAVE to go back for another round (two cycles), likely in December... oh yuck of yucks. The idea of being away during the holiday season is really upsetting. They would make sure I wasn't inpatient on Christmas day, but I would not be able to postpone round 2 until January. Very distressing to the mommy who wants to have fun holiday memories, every year. But after mulling it for a while it finally hit me (I told you they found nothing in that brain MRI!) that if missing one holiday season gives me the good health to be here for many more, who the hell will remember that I wasn't at the holiday program wherever, in 2009?
Friday, September 18, 2009
Jim and I arrived bright and early at Dr. Olencki's office on the 10th, for bloodwork - including placing of the port needles, yay - and a consult with Dr. O. Dr. O was concerned that I had never had a 12 hour fasting lipid profile - honestly, they had written me a script for the test and I totally forgot to do it. But everything else was in order... except... he was puzzled by the results of the CT scans that they did in Columbus on 9/3. What was puzzling these experts? Well, neither Dr. O or the radiologist could see any liver mets on these scans. So, like, are you saying the liver is clean? Jim and I were dumbfounded. It all got very strange and confusing at this point, as the doctor talked about the CTs that found the mets in July, the MRI I had in Cleveland in July, and the CTs from Columbus. Throughout all of this, the ovarian mass remained; no question about that one. It was decided that I go to the hospital to be admitted and have an abdominal MRI to get yet another look at my liver. "We have to make sure there is disease to be fighting before administering treatment." Right on! Of course he also muttered something like "I'm sure these are liver mets". You can guess where my thoughts were focused at this point. Maybe the ovary thing is... something else. Ovarian cancer would be Bad, but if the ovary is the only met spot, then maybe we go for surgery after all? Both Jim's and my minds were reeling.
We made our way over to The James and went to admitting. I found a bit of amusement in a situation there. A trio of elderly folks walked in to admitting just ahead of us; I think a married couple and another woman with them. The man appeared to be the patient. The receptionist told them it would be a while before a bed would be ready. How long a while? She didn't know, of course. But in hospital time, a while means a WAY LONG TIME usually, in this case, like go have lunch and come back, and don't hurry. For those of you unfamiliar, there are of course plenty of beds in hospitals here in the US - however, they can't put patients into those empty beds until they have proper nursing and support staffing for that patient. So sometimes they have to juggle people and floors and the patient has to wait. Our situation was different - they have a certain number of slots on the floor where they do IL-2 and so mine was just waiting for me, so to speak.
We checked in after the elderly trio made their way to the lobby chairs, and then we were taken back to register, with the same nice young man who registered me when I had my port placed; it was nice to see a familiar face. We came back out to the lobby, where the elderly trio were still getting themselves situated in the chairs. Within about 5-10 min the registration man came out and told me my room was ready. Oh, man, I could feel the elderly wife's glare of death on me as Jim and I left the lobby. I think she thought we 'line jumped' them somehow! Hey lady, this isn't Applebee's and I am betting your husband doesn't want my "table".
Another cool thing - when you are admitted, the reg/admit person takes you to your floor! We walked through the corridors to The James and up to my new home, Seven James. I quickly learned that I had not yet scored a private room. Instead I had a roommate who was recovering from a surgical procedure. Jim and I got somewhat settled in, to see what was to happen next. I got to meet some of the staff, all of whom were warm and friendly, answered a lot of questions, and were told that I could be taken to MRI at any time, so from this point forward (about 11:15 AM) I was classified as NPO (nothing to eat or drink by mouth). I'd had a bagel at Ellen's that morning but nothing else, being too nervous to eat. I also learned that while I had two needles in my fancy-schmancy new double lumen port, that neither of those was a Power Port needle, which is necessary if the port is to be used to push IV contrast. No worries though, I wasn't getting contrast this time. It as also decided that they would draw blood to test for ovarian cancer markers. This made me wonder, why didn't they do that in Cleveland in July? Who knows; I think that everyone was so convinced that we were dealing with RCC that they didn't see the point.
As we sat and waited, I kept telling myself alternately that they would find the mets on the MRI and we'd get started with IL-2, or that we'd find no mets and maybe I could go home. You can guess which option was more popular in my head. Jim was sleepy so he dozed; I did a little too, though there was a lot of commotion between getting me admitted and people coming in to see my roommate. At some point in the afternoon we were told that the MRI was getting slammed with emergency scans, so I wouldn't be going down until the evening. Starting to gt a little hungry, but I had an idea. I asked the NP (nurse practitioner) if they could collect blood for the 12 hour fasting lipid profile when they did my evening draw. This idea was met with enthusiasm - we'll make the best of a tough situation. Then at about 5:30 PM, they came to take me to MRI, earlier than expected. Good news though.
As the transporter wheeled me to MRI, we chatted and I learned that he is a student at OSU in molecular genetics. Aha, he seemed very different from the transporters I have met throughout my many hospital stays. And I discovered something - that at this teaching hospital, connected to a university, lots of people work there for the free tuition benefit. Genius plan! It seemed like everyone was in nursing school or NP school. Very cool.
At MRI I had to cool my heels for a bit; they put my wheelchair into a bedspace, then a tech pulled the curtain in front of me, saying, "we have a critical case coming in, and so for your privacy and theirs, we're pulling the curtain." Of course all I wanted to do was to peek out then, but I stayed put, ever the compliant patient. Finally they pulled the curtain back and the tech asked me which arm was better for an IV. What IV? I was told no contrast! Didn't matter, as the radiologist overruled the oncologist on the issue of contrast. And so no Power Port needle = get stuck in the arm. The tech who did the stick and scan got me on the first try and bandaged it tightly afterward, but I still ended up with a lovely bruise. *sigh* Finally I got back to the room where a dinner tray was waiting for me. As I prepared to eat my first solid food in 12 hours, Jim reminded me of the darn fasting lipid. So I called my nurse, who decided 11.5 hours was close enough, and took my blood samples so I could eat. At some point we were told that we would not have results on the MRI until the morning, so I sent Jim home to sleep at Ellen and Jay's. He offered to stay with me but it was too cramped in the room and since he was driving home the next day, I wanted him to get a good night of rest. I actually got a decent night of sleep myself.
Friday morning and the wait was back on. The first wait was for Jim, who had trouble getting to the hospital, and our newish GPS, whose voice I have named Bob, was very unhelpful. Then waited for breakfast - my roommate and I chatted throughout the morning and realized that neither of us had received it. For some reason, trays weren't delivered to Seven until about 9:15 or so... weird. Then the wait for results continued. Oh, and Gyn-Onc was sent in to see me. Prior them coming, the NP told me that the blood results were back and that my markers were normal. THAT was a huge relief - nobody wants to deal with one cancer, much less two, at one time, though it does happen. The Gyn resident came in to do a quick pelvic exam. I got as far as taking off my pajama bottoms when the attending Gyn and entourage arrived. Lovely! So I got to meet with him with the sheets pulled up while 3 women stared at me. At this point Jim had slipped downstairs for lunch so I was alone. The doctor explained that between the normal blood markers, and the views of the ovarian mass from the last week's CTs and my Cleveland tests, he felt very certain that I do NOT have ovarian cancer and that the mass is in fact likely RCC. I asked him if he'd seen the MRI results from the night before and he went looking for them. Turned out that they didn't scan my pelvis, just the abdomen, which made me really angry and got me upset and crying. The Gyn doctor returned to talk to me and thought I was crying because the pelvic exam had hurt... as if! I told him how angry and frustrated I was about the MRI because I had asked the fellow doctor the day before if they would be imaging the ovary and I understood him to say yes. The Gyn told me that it was okay, because he wouldn't have seen anything on the last MRI to change his mind. Good to know, but I was beyond stressed by this point. Jim came back and I cried on his shoulder a bit. Finally, finally, 30 hours after being admitted, I was told that yes, the MRI results were in, and yes, they showed 3 lesions on my liver. Somewhere along the line someone said "we see 3 rather than 4 from before" or something like that, which I didn't understand at all but let go for now.
I had of course missed the 2:00PM dose of IL-2 and so would get my first dose at 10:00PM. Jim left to head home and pick up the girls from his mom's house, so he never saw me get a dose; weird how that worked out. They did find me another room and while I waited for them to move me, Ellen and Jay came to visit. They got to help move my stuff to the new, private room, which was really nice - bigger than the usual room. We visited some and they went home, promising to return early on Saturday. They had to come early because OSU was playing USC in a night game on campus, which meant traffic and people would be crazy.
To be continued...
Tuesday, September 15, 2009
will return for more on 9/24
full account to follow, right now I am beyond tired.
But I thank all of you for your good thoughts - hopefully I can use them to steel me for the battle ahead, which will be rough... now I realize just how rough... turns out I am more of a wimp than I thought.
I will also share with you what a 3 year old does to cope when mommy's away. Separate projects using 1) sharpie pens, and 2) scissors that can cut hair. Stay tuned...
Sunday, September 06, 2009
On Tuesday I had an appointment with one of the cardiologists at Dr. O's preferred practice. I was running late leaving Cleveland that morning, as I wanted to see Rebecca onto the bus. So I was a little concerned about being considered 'late' for my appointment, but they were running behind so it didn't matter. The doctor was very nice, told me that my echo had been fine, and then asked me if I was scheduled for a stress test. I thought 'here we go again' but then she told me that she generally only ordered them for older patients who had cardiac issues. She had me stay for an EKG and said that if that was normal, that she would clear me for HDIL2. It was and she did.
I had a short-ish amount of time to get from their office to OSU for a pulmonary function test. I didn't think that would be difficult but it was - I found it very challenging to blow into a tube for a long time without getting my tongue in the way, stopping, etc. but got through it. The tech was nice about it though I was getting frustrated. That all seemed to go well and I was free to go.
Since it was early afternoon, I met up with Ellen at the mall to exchange the aforementioned offending shirt at Gymboree. While at the mall I got the girls some things on sale at Children's Place, got myself a new purse and wallet that I will have Jim and the girls give me for my birthday, and was treated to Starbucks by Ellen. It was a treat to just get to shop child free! I love my girls and hate to be apart from them since we are apart from each other so much during the week, but it was a stress-free experience shopping with just another adult. On the way back to Cleveland, I had to stop at Grandpa's for more fudge, as per family request. The last hour of the trip was a bit hard on the back but I made it - though I don't recommend the round trip in one day.
I got one day back at work, then was off to Columbus again for two days. This time I was accompanied by Jim's mom, Marianne. We had a very nice drive down to the hospital, where I checked in for CT scans. There I encountered the only odd customer service experience there so far. A woman called me back to put in an IV line and give me contrast to drink - unfortunately that was the hated barium, though I tolerated it much better than I had the first time I drank it. The issue was that I had an appointment, but no order from the doctor on the computer for the test. So this lady didn't seem to know what to do with me. Uh, contact the doctor's office maybe? Then she looked briefly at my arm for a vein for an IV line. Almost immediately she decided to use a vein on the inside of my right wrist, while commenting on the small size of the veins there. I knew this would be a bad idea and I was right. She fished around for a bit, ow ow ow, then finally pulled the needle out and said that she'd have to have the nurser put in the line. Fine by me! So she sent me back to the waiting area and told me NOT to drink the barium until she'd confirmed the orders, which she did within 15 mins. Finally she called me back again and called a nurse to put in the line, which the nurse did on the first try. The techs came looking for me while the line was being placed, so I was ready to go. The scans themselves were fine; been there done that enough times already that I know the drill. One of the techs came into the room to pull my line and started asking me pointed questions about why I was there, what I was having done, etc. The questions seemed abrupt until she said, "I'm asking you this because I have what you have." Whoa... turns out we are the same age. She has a 3cm tumor and is scheduled for a partial nephrectomy in October. I could only imagine how frightened she must have been to see my diagnosis. I reassured her that she was likely to only need that one surgery and that would be it for her. I also told her about KCA and ACOR. Hopefully she'll follow up with them and feel more comfortable. I felt so bad for her; working in the medical profession has to make it that much harder to have your own health issues.
After the scan, Marianne and I went to Ellen's house to spend the night. We met Ellen's husband Jay and our friend Heather at The Pub. We have one in Cleveland though neither Marianne nor I had been there yet, so this was a good time to try it out. We both enjoyed the food and company, though it was LOUD inside. I am not a beer connoisseur, but had I been in the mood, I probably would have tried one of their beers. We went back to Ellen and Jay's where we talked and watched TV later than we should have before retiring for the night.
The next morning, we were scheduled to be back at the hospital at 10:00for my port placement procedure. We missed the time by a bit but it didn't seem to be a problem. We got to the pre-op area, where I got to change into a lovely hospital gown, get an IV line - more ow ow ow - and wait. Finally went downstairs to the OR area, though I had to go to another pre-op area first. The doctor came to see me to go over the consent form - I just love hearing about all the weird possible tragic things that could happen, just before going into the procedure. Most of it was standard stuff, infections and so forth. Then he tells me that if I take a deep breath at a certain point when they are putting the catheter in, that I could create an embolism that could be fatal. Super! Fortunately he told me that they would be closely watching my breathing and that at that point they would either remind me to continue to breathe slowly and easily, or would ask me to hold my breath for 10-15 seconds.
Once in the OR, the nurse and radiology tech bustled around while chatting pleasantly with me. Everyone that day was unfailingly pleasant - saying hello and smiling even if just passing by. Anyhow, they started to give me Versed, and then the doctor came in and I recall the stinging sensation of him numbing my chest area. Next thing I knew I was all bandaged up and ready to go back to pre/post op. I mentioned to the nurse that I must have slept through the procedure. "Oh no," she replied, "you talked all through it." Uh oh... what in the he!! did I say? She laughed and clarified that I answered all of their questions. She told me that once a patient screamed all through the procedure then afterward, commented that she must have slept through it. So, I am convinced that Versed does cause amnesia. Pretty cool.
Back to post op, where they monitored my vitals and were impressed that I was so awake and alert so soon. Then they took me back to the initial floor I'd been on, where Marianne was allowed to meet up with me and I got a sandwich, chips and juice, my first solid food since The Pub. I was able to leave by about 4:30 so we headed home. I felt well enough that we met Jim, the girls, and Jim's dad for supper at Bob Evans.
On Saturday I slept in, got up for a while, then took a decently long afternoon nap. My body needed the rest, for sure. The fact that I didn't take my ADD medication helped, too.
I am to report to Dr O's office on Thursday at 7:30 for bloodwork (they will use the port, yay!) and to see him before being admitted at the hospital. The hope is to get me in and settled in time for the 2:00 infusion. As the big day gets closer, I'm getting a bit more nervous about the whole thing. I think the idea that is on my mind the most is that I will likely be removed from the outside world, because I will be feeling too sick, for several days. The thought of being unable to converse or otherwise participate in any kind of communication blows my mind. It's only for a short time, relatively speaking but still seems so weird to me. I realized the other day that if I respond to these two cycles in September, I will have to go through two more cycles, probably around the holidays. I told Jim that once I am recovered sufficiently from these first cycles, we need to get our holiday shopping completed so that we don't have to worry about that later on. And if I don't respond, then we're ahead of the Christmas shopping game, so it's all good.