Wednesday, February 24, 2010
Next up!
My blood pressure is back to normal. I had 17 doses in my two weeks: still slightly over the average of 16. I'll get scanned in about 6 weeks to see how I'm doing and so I know whether to go on with two more sessions of IL-2 or to go on to something else.
Not enough pressure!
They couldn't get my blood pressure up so off to home I go! I've got lots of energy but am still weak. I'm guessing I have 5-10 days to be about whole.
Tuesday, February 23, 2010
Tuesday
My blood pressure dropped and got very so they put in int care. I haven't had a does since 3am which was dose 4. The doctor is in England right now and we're waiting for word from him after he reviews the numbers to see if we should go on or not.
Monday, February 22, 2010
IL-Ow
First dose made me really weak. Blood pressure made them unable to admin dose 2. They took a sample from PICC line thinking there might be bacteria there. If not I'm not sure there is a way to continue. If there is bacteria, I think they change the Picc line or treat me and then try some more. No IL-2 last night or this morning.
Had a huge hot flash after the dose a while later. Thought I'd pass out! It was related to the swelling that was starting a bit I think. Very nasty.
Had a huge hot flash after the dose a while later. Thought I'd pass out! It was related to the swelling that was starting a bit I think. Very nasty.
Sunday, February 21, 2010
2nd IL-2 run
We checked in at noon after splitting a BBQ sandwich at "The Hat". It was just right! About 5 hours of tests and setup to get started. IL-2 dose 1 went in at 3pm. I dozed a couple times while they did things to me. X-ray, ekg, change my PICC line dressing, start various IVs and pills, a lunch tray & more.
They say that the side effects will be progressive generally although some people have less reaction the 2nd time around but that's more rare. Usually they get the same side effects so I can expect weakness, nausea (they are giving me more for that this time), bloating, lack of endurance.
A couple people thought it was pretty funny how I emailed the doctor to get out a week from Saturday from my bed. The USC Wireless is a bit weak but it works with my netbook.
The avg. doses for the 2nd go round is 7. Cheri is betting 11 while I bet 9. If we come back in a couple months due to it working for the 2nd phase, it will be in a newer bigger building that they are moving to in 2 weeks.
We both have our gadgets going and ready for the long haul. And lots of dozing. I mostly use the mp3 player for entertainment although the tv was on a bunch last time also.
They say that the side effects will be progressive generally although some people have less reaction the 2nd time around but that's more rare. Usually they get the same side effects so I can expect weakness, nausea (they are giving me more for that this time), bloating, lack of endurance.
A couple people thought it was pretty funny how I emailed the doctor to get out a week from Saturday from my bed. The USC Wireless is a bit weak but it works with my netbook.
The avg. doses for the 2nd go round is 7. Cheri is betting 11 while I bet 9. If we come back in a couple months due to it working for the 2nd phase, it will be in a newer bigger building that they are moving to in 2 weeks.
We both have our gadgets going and ready for the long haul. And lots of dozing. I mostly use the mp3 player for entertainment although the tv was on a bunch last time also.
Saturday, February 20, 2010
IL-2 part 2
I'm still weak but they want me to come and do the 2nd week anyway. I'm guessing that I'll just last for 3 days of doses (6-8) and be out a couple days later with 1-2 weeks to recover. Recovery might take longer since I'm starting out weak. I wanted to work a 1/2 day or 2 this week but I wasn't able to during the week but I woke up way early this morning and toughed out 4 hours. Lots of mail and a couple courier things are on their way with a couple assignments for my attorney friends to do for me. Everything is smooth so far...
Tuesday, February 16, 2010
4 days out from IL-2 dose
My side effects are getting better day by day but slower than what had been suggested. I've dropped 1/2 of the 20lbs. of water weight. I don't hyperventilate at effort but I am short of breath after doing something like going up stairs. I'm low on energy and weak enough to not want to take a long walk outside. Generally just unsteady. I see the doctor tomorrow about the next phase that should start Sunday. The treatment loses a lot if you don't do it right away but if I'm not recovered it would lose effectiveness too because I could not take many doses of the IL-2. Yesterday (Monday) was the first day that I ate normally. Giovanni's spaghetti for lunch and a slice of pepperoni for dinner.
My sore throat I had in the hospital (which was insignificant) seems to have turned into a decent cough for now. I'm not sure how this might affect things.
I'm not up for doing anything organized so I'm just kicking back to recuperate for today and probably the rest of the week.
My sore throat I had in the hospital (which was insignificant) seems to have turned into a decent cough for now. I'm not sure how this might affect things.
I'm not up for doing anything organized so I'm just kicking back to recuperate for today and probably the rest of the week.
Sunday, February 14, 2010
Home from first HD IL-2
I kept feeling physically exhausted till I thought I had nothing left. I made the 13th of 14 doses while usually people stop at 9 with the doctor hoping that you'll make 12. I'm so glad to be home although that will fade quickly with the 2nd week needing to happen starting next Sunday. I had other symptoms. When the weakness started fading I realized that retaining water (20 lbs!) was lingering on. My legs felt very weak. The water made me feel like I had just had the biggest meal of my life but it lingers on for some days. I had not really thought about the water, thinking it would go away and then I would work on the weakness. The doctors (a few saw me at the hospital with Dr. Quinn in charge but with another doctor bringing in residents and fellows in the morning).
When I went home on Saturday, 2/13, I felt good but weak when I got home. I took a very shallow bath (I had the PICC IV line still in my arm for next time and can't submerge it). When I dried off and dressed I sat in the recliner and fell asleep for a couple hours. I woke up feeling huge still. Julia came by to pick up her kids and she, Cheri and I chatted for a couple hours. When she and her kids left I was weak and bloated still/again and went to sleep. I woke up at 1am and my legs felt thinner. At 3am I woke up again and my legs seems to feel much more normal although my torso and arms were still bloated. I'm thinking that will fade today and tonight which is Valentine's day. I still don't have much appetite, these past few days, due to the "full" feeling. Writing this would not have seemed possible yesterday but today, 2/14, I'm feeling weak still, if I move around much, but I think I'll be able to read and type in the morning as is my usual routine. My face and legs perhaps had the swelling first and have faded to normalcy first while my torso and arms got the water retention last and will take a day or "three" longer.
When I swelled, that area turned red like a sun burn. When it fades some skin peeled like a mild sunburn. I would describe all of this as discomfort rather than pain. It was strong enough to make me think that a 14th dose would break me or worse but it was all weakness and discomfort. My blood pressure sunk that day (to about 80 over 45 if I recollect correctly), even more than the IL-2 had pushed me before (to about 95 over 50) so the doctors agreed that I should stop or I might end up in critical care. They had put me right across from the nurse's station for critical care so that nursing help was always close. The nursing staff was pretty amazing and helpful at all times.
Julia, Debbie and Dane were big helps during the day while Cheri spent every night in the recliner there. They all did whatever was needed and were very generous. So many people have offered to help...it's amazing. Nancy and Kristi stayed at our house with the kids for all the time that Cheri was helping me. It seems that generosity, kindness and the resilience of other patients are normal in family and friends. It is very heartening. While the medication has pointed out physical limits to me, people helping are beyond what I would have hoped or expected.
I have no idea how someone in worse shape than me could survive this. I'm guessing that I was the only IL-2 patient there but how people cope is beyond me. Sleeping is interrupted constantly. There are boring times in the day but there are so many things going on that sleep tends not to last beyond an hour. They have to take vital signs (blood pressure, pulse and oxygenization) every 2 hours. They weigh you. They take blood. They clean the room. They give you pills or injections into your IV feed. They question you. There are other things that I am no recalling and so sleep is so deprived. Then there is using the bathroom. You are weak and wearing a gown that you can't take off without having to re-snap in the heart monitor wires to your chest sensors or re-snap the somewhat complicated gown snaps that allow you to get past your IV tubes. You have to drag your mobile IV unit to the restroom after unplugging it from wall plugs about at the height of my shoulders. I had to measure the liquid that went into a couple plastic appliances that they supplied (which I could choose from). So you are weak, holding up a folded gown and needing a couple more arms. Nurse will help if you ask but that is hard for me to request. It is so tedious but necessary. And very tiring.
When I went home on Saturday, 2/13, I felt good but weak when I got home. I took a very shallow bath (I had the PICC IV line still in my arm for next time and can't submerge it). When I dried off and dressed I sat in the recliner and fell asleep for a couple hours. I woke up feeling huge still. Julia came by to pick up her kids and she, Cheri and I chatted for a couple hours. When she and her kids left I was weak and bloated still/again and went to sleep. I woke up at 1am and my legs felt thinner. At 3am I woke up again and my legs seems to feel much more normal although my torso and arms were still bloated. I'm thinking that will fade today and tonight which is Valentine's day. I still don't have much appetite, these past few days, due to the "full" feeling. Writing this would not have seemed possible yesterday but today, 2/14, I'm feeling weak still, if I move around much, but I think I'll be able to read and type in the morning as is my usual routine. My face and legs perhaps had the swelling first and have faded to normalcy first while my torso and arms got the water retention last and will take a day or "three" longer.
When I swelled, that area turned red like a sun burn. When it fades some skin peeled like a mild sunburn. I would describe all of this as discomfort rather than pain. It was strong enough to make me think that a 14th dose would break me or worse but it was all weakness and discomfort. My blood pressure sunk that day (to about 80 over 45 if I recollect correctly), even more than the IL-2 had pushed me before (to about 95 over 50) so the doctors agreed that I should stop or I might end up in critical care. They had put me right across from the nurse's station for critical care so that nursing help was always close. The nursing staff was pretty amazing and helpful at all times.
Julia, Debbie and Dane were big helps during the day while Cheri spent every night in the recliner there. They all did whatever was needed and were very generous. So many people have offered to help...it's amazing. Nancy and Kristi stayed at our house with the kids for all the time that Cheri was helping me. It seems that generosity, kindness and the resilience of other patients are normal in family and friends. It is very heartening. While the medication has pointed out physical limits to me, people helping are beyond what I would have hoped or expected.
I have no idea how someone in worse shape than me could survive this. I'm guessing that I was the only IL-2 patient there but how people cope is beyond me. Sleeping is interrupted constantly. There are boring times in the day but there are so many things going on that sleep tends not to last beyond an hour. They have to take vital signs (blood pressure, pulse and oxygenization) every 2 hours. They weigh you. They take blood. They clean the room. They give you pills or injections into your IV feed. They question you. There are other things that I am no recalling and so sleep is so deprived. Then there is using the bathroom. You are weak and wearing a gown that you can't take off without having to re-snap in the heart monitor wires to your chest sensors or re-snap the somewhat complicated gown snaps that allow you to get past your IV tubes. You have to drag your mobile IV unit to the restroom after unplugging it from wall plugs about at the height of my shoulders. I had to measure the liquid that went into a couple plastic appliances that they supplied (which I could choose from). So you are weak, holding up a folded gown and needing a couple more arms. Nurse will help if you ask but that is hard for me to request. It is so tedious but necessary. And very tiring.
Tuesday, February 9, 2010
Tuesday 11:30
I got Dose 6 at 7am this morning. I got some nausea yesterday once and this morning. I'm flush (red face and arms and a bit warm). My endurance is shot: I just sat up to get this netbook and was breathing hard and fast. No more walking the halls here! These effects should all leave in the days follow the IL-2 stopping. My last dose is Thursday at 11pm.
I have no pain but I'm too shot to leave the bed except for the bathroom and barely for that. It's hard to get comfortable probably just from being in the bed too long. Cheri and Julia have been great about watching and helping me. Tomorrow Debbie (my niece) watches me for the work day and Thursday, the last and possibly worst day, Dane and Rose are coming during the work day. I probably go home Saturday morning. I hope I get my endurance back for Valentine's day for a nice dinner!
I'm also retaining a bunch of water. It hasn't puffed out anything but my face somewhat. They just gave me something to make me shed the water.
I have no pain but I'm too shot to leave the bed except for the bathroom and barely for that. It's hard to get comfortable probably just from being in the bed too long. Cheri and Julia have been great about watching and helping me. Tomorrow Debbie (my niece) watches me for the work day and Thursday, the last and possibly worst day, Dane and Rose are coming during the work day. I probably go home Saturday morning. I hope I get my endurance back for Valentine's day for a nice dinner!
I'm also retaining a bunch of water. It hasn't puffed out anything but my face somewhat. They just gave me something to make me shed the water.
Monday, February 8, 2010
Mon 8 am
They just finished dose 3 of IL-2. My blood pressure is down a bit so they're adding dopamine. I feel flushed and a bit light headed.
Sunday, February 7, 2010
Sun 7pm
Dinner was alright. A roll of beef with gravy, some decent potatoes and weak vegetables and chicken noodle soup. The fresh brewed iced tea and vanilla ice cream helped. Also a nice dinner roll.
Almost 4 hours and no side effects. They give you some preventative stuff an hour before in the drip to avoid flu symptoms and nausea.
The chemo nurse had a handmade board that had a lot of the information about the whole experience. Dose 1-4 (up to 11pm tomorrow) has you happy. Dose 6-7 has you having discomfort. Dose 8-9 has you confused and it's a bit harder after for dose 10-14 (if you can handle that) till you leave and you're hopeful.
Almost 4 hours and no side effects. They give you some preventative stuff an hour before in the drip to avoid flu symptoms and nausea.
The chemo nurse had a handmade board that had a lot of the information about the whole experience. Dose 1-4 (up to 11pm tomorrow) has you happy. Dose 6-7 has you having discomfort. Dose 8-9 has you confused and it's a bit harder after for dose 10-14 (if you can handle that) till you leave and you're hopeful.
Food
The food looks better! One meal is Filet Mignon and another is Cornish Game hen. Waldorf Salad, hot fudge sunday. salman, cheesecake, cold beef plate.
The first meal was roast chicken, mashed potatoes, fruit cup and small salad. I'm pretty full after that.
All of it was pretty decent. They even follow the Hobbit tradition of a "Second breakfast" with the first one a continental breakfast while the next one is a snack with 1-4 snacks from diff. categories. I picked a dinner salad and ice cream for my snack.
The first meal was roast chicken, mashed potatoes, fruit cup and small salad. I'm pretty full after that.
All of it was pretty decent. They even follow the Hobbit tradition of a "Second breakfast" with the first one a continental breakfast while the next one is a snack with 1-4 snacks from diff. categories. I picked a dinner salad and ice cream for my snack.
HD IL-2
Checked in 3 hours ago. Nurses and doctors have been in and out for tests, forms and information. Haven't had time to get bored... Got an IV drip with some medications to minimize side effects and the IL-2 could come by any time now. Cheri is patiently waiting and reading a book.
Thursday, February 4, 2010
Getting ready
We saw the oncologist about the test results and they were fine so they added an appointment for the same day to put a PICC line which is an IV with a line in the vein that goes near the heart. IVs are only supposed to stay in for 3 days but the PICC line can say much longer and lets them get the medicine in and take blood out without sticking me with new needles all the time. It took about 90 minutes and was just uncomfortable and not really painful.
I go in Sunday, 2/7/10, at noon and my first dose of IL-2 will be 3pm. From there it's 11pm, 7am & 3pm every day (if I can stand it).
I've got 3 of my best friends/relatives lined up to take some of the heat off Cheri for watching over me during work hours. Right now Cheri just wants Monday and Tuesday off to make 2 court appearances and our friend/neighbor Julia is going to take her place for that time.
I go in Sunday, 2/7/10, at noon and my first dose of IL-2 will be 3pm. From there it's 11pm, 7am & 3pm every day (if I can stand it).
I've got 3 of my best friends/relatives lined up to take some of the heat off Cheri for watching over me during work hours. Right now Cheri just wants Monday and Tuesday off to make 2 court appearances and our friend/neighbor Julia is going to take her place for that time.
Insurance - finally
I got an email at 3am a couple days ago with "finalized" claims from BlueShield. It was all the claims in suspension "pending elgibility investigation". Now I just have to audit whether they got the deductible right since the one CAT scan that they've re-done 4 times is still wrong. I think they just carried over the previous wrong one, that got suspended before the fixed it, to be the same after the unsuspended me. Sheesh.
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