We had a very lazy day and pretty much just hung out around the house. Bill slept until about 3:30 this afternoon, but got up just in time to eat. Tyler didn't nap (and needed it) so they were both in bed by 7:00 tonight. Luckily, he fell asleep right before I was going to put him up for sale on e-bay (with free shipping, of course). An over-tired child does not make a relaxing evening.
Tomorrow doesn't prove itself to be very exciting, at least not at the moment, and I have probably jinxed myself since moments change rapidly around here. One thing I MUST do is go grocery shopping. With our run of recent events, I haven't done "big shopping" in a few weeks. Literally, we have one piece of fruit in our house... and it is a lemon. When life gives you lemons...
Saturday, May 30, 2009
Friday, May 29, 2009
We're Home... Again!
Bill is home! Tyler and I were on our way to visit him this evening and he called to tell me that he would be able to go home with us. I went to the hospital this morning, sat with him the majority of the day, came back home to pick up Tyler (stopped at my work end-of-the-year party), and then headed back to the hospital so Tyler could see him.
Just to recap...
He had his right lung drained yesterday and they were able to get 2 liters out! That is quite a bit for only one side. He doesn't have anything scheduled for the other side, although he is going to need it pretty soon. I can still hear wheezing as he breathes.
They took him in today to fix his catheter. It ended up being the tip and they easily replaced it. He also was able to drain which instantly makes him feel better.
They removed his PICC line before we left, and he was given oral antibiotics for seven days to help combat the infection. I hope this one works!
He will go back to his regular doctor in a week for a check-up and will probably get another referral to have the other lung drained. Before leaving the hospital, Bill was given a prescription for a "rapid release" pain medication for emergencies, such as the one we had the other night. He also got an under the tongue anti-nausea drug that works wonders in a pinch. It's incredible to see the difference in his appearance from yesterday to today. He looks so much better and actually has a little color on his face. He even commented that he felt badly for taking up a bed in the hospital because he thought he was well enough to go home. Hopefully this feeling stays with us a little longer this time!
Just to recap...
He had his right lung drained yesterday and they were able to get 2 liters out! That is quite a bit for only one side. He doesn't have anything scheduled for the other side, although he is going to need it pretty soon. I can still hear wheezing as he breathes.
They took him in today to fix his catheter. It ended up being the tip and they easily replaced it. He also was able to drain which instantly makes him feel better.
They removed his PICC line before we left, and he was given oral antibiotics for seven days to help combat the infection. I hope this one works!
He will go back to his regular doctor in a week for a check-up and will probably get another referral to have the other lung drained. Before leaving the hospital, Bill was given a prescription for a "rapid release" pain medication for emergencies, such as the one we had the other night. He also got an under the tongue anti-nausea drug that works wonders in a pinch. It's incredible to see the difference in his appearance from yesterday to today. He looks so much better and actually has a little color on his face. He even commented that he felt badly for taking up a bed in the hospital because he thought he was well enough to go home. Hopefully this feeling stays with us a little longer this time!
Thursday, May 28, 2009
Hospital Trip #2
Bill is back in the hospital and he is resting comfortably. Thank goodness they ended up admitting him. He had blood work done yesterday and his regular doctor called last night (on his cell phone and we missed the call) to tell him to go to the ER because his white blood cell count was again too high. Not a huge surprise since he was in so much pain last night. They are flushing him with a different antibiotic to hopefully wipe out the infection. He'll miss the scans tomorrow and I'll need to reschedule his appointment at the City of Hope. Hopefully things won't be too delayed. I am headed to the hospital tomorrow morning to wrap my head around all of this. I promise to keep posting!!
Wednesday, May 27, 2009
Fast and Furious
We have had (are having) a rough night so far. I got Bill his trusty Chinese chicken salad, and it came back up almost immediately, which is also when the pain started. Although he was able to drain when Christina came over, he hasn't been able to drain since, which is probably the cause of the extreme agony he's in tonight. We tried everything to get the catheter top apart, and the dents in my fingers prove we were unsuccessful. We had the heating pad, ice, and three different pain medications in our attempt to ease the pain. He was groaning, rocking, and literally could not stay in one spot. It has been two hours of intense stomach pain for him. Thankfully, the last set of medications have done the trick and he's lying down (somewhat) comfortably, and I would anticipate he'll doze off rather shortly.
These bouts of hardcore pain are not good for his strength, will, or motivation. Tomorrow he goes in for his lung draining, and hopefully they can fix his catheter. He also mentioned that he would gladly welcome a few days back in the hospital. His scans are scheduled for Friday, and we are supposed to go back to the City of Hope for results on Monday. A hospital stay may change the plans, but that is really the least of my worries at this point. I just want him to be out of pain. Cancer is bad enough, why must it be so painful?
These bouts of hardcore pain are not good for his strength, will, or motivation. Tomorrow he goes in for his lung draining, and hopefully they can fix his catheter. He also mentioned that he would gladly welcome a few days back in the hospital. His scans are scheduled for Friday, and we are supposed to go back to the City of Hope for results on Monday. A hospital stay may change the plans, but that is really the least of my worries at this point. I just want him to be out of pain. Cancer is bad enough, why must it be so painful?
Monday, May 25, 2009
Saint Christina
It is always comforting to post about a problem that has already been solved. Today, the skies opened up and and sent us an angel... her name is Christina and she is a nurse at the City of Hope (but coincidentally, lives on the same street as one of my past students and a current one, too... long story... see past posts). She texted me today asking how we were doing, and I told her that along with needing his lungs drained, Bill had some sort of blockage in his peritoneal catheter. It seemed like it stopped right at the exit point, which meant he was uncomfortable because this was day two of NOT draining.
*Disclaimer - I tried everything to try to get it unclogged. I even tried to take the tip connector apart, but was afraid to open it completely which would result in turning my husband into a fountain.*
We went to my parents' house for a Memorial Day BBQ and was thrilled that Bill was able and really wanted to go with us. It was so nice to have him there. The hard part was trying to coordinate having Christina come by to look at his catheter while we were still at home. Since that would mean he'd have to wait until nighttime, she didn't hesitate to drive all the way to their house for a quick home visit. She was able to get the tip opened and "unblocked" so he could drain and relieve the immense pressure he was feeling. Thank you to Christina, who is the savior of the day!!
*Disclaimer - I tried everything to try to get it unclogged. I even tried to take the tip connector apart, but was afraid to open it completely which would result in turning my husband into a fountain.*
We went to my parents' house for a Memorial Day BBQ and was thrilled that Bill was able and really wanted to go with us. It was so nice to have him there. The hard part was trying to coordinate having Christina come by to look at his catheter while we were still at home. Since that would mean he'd have to wait until nighttime, she didn't hesitate to drive all the way to their house for a quick home visit. She was able to get the tip opened and "unblocked" so he could drain and relieve the immense pressure he was feeling. Thank you to Christina, who is the savior of the day!!
Sunday, May 24, 2009
Oxy-Cotton
Tyler was "getting ready" this morning in our bathroom, and after brushing his teeth he was wetting a cotton ball. (I have no idea why, but I wasn't about to argue over a cotton ball.) He put it in his hand and said, "Look Mommy, oxy-cotton!" Obviously he's heard that word when we talk about Bill's pain medicine, Oxycontin. It goes to show that he really does absorb more than we assume. I can only pray at this point that all of this advanced education is a precursor for medical school. I am already saving for his therapy... what's one more thing? :)
My New Toy
I finally bit the bullet and bought a new computer yesterday. It was a long time coming. Our old one was... well, old and slow. I have been searching and comparing prices for about three months now, so it felt good to finally make the purchase. (For the techies - I got an HP laptop.)
Yesterday was pretty uneventful on the cancer front. I think Bill was feeling better, but was afraid to come out and say it for fear of jinxing his luck. He had a few extremely painful days that were a wake-up call. It was the first time I have heard him say that he was "done", the pain was just too great. We had a long talk yesterday about the severity, and our next steps. Although I don't feel he is at this point, we had very difficult discussion about hospice and what they offer. It will really depend on the results of the scans next week. I know that the pain is excruciating, but having to watch him deal with this is so hard on my heart. I just want him to be comfortable, and right now he is far from it. I'll have to update more later... this is all too sad for me to handle at 4:00 in the afternoon... this is more of a 10pm topic when Tyler is asleep.
Yesterday was pretty uneventful on the cancer front. I think Bill was feeling better, but was afraid to come out and say it for fear of jinxing his luck. He had a few extremely painful days that were a wake-up call. It was the first time I have heard him say that he was "done", the pain was just too great. We had a long talk yesterday about the severity, and our next steps. Although I don't feel he is at this point, we had very difficult discussion about hospice and what they offer. It will really depend on the results of the scans next week. I know that the pain is excruciating, but having to watch him deal with this is so hard on my heart. I just want him to be comfortable, and right now he is far from it. I'll have to update more later... this is all too sad for me to handle at 4:00 in the afternoon... this is more of a 10pm topic when Tyler is asleep.
Friday, May 22, 2009
Friday Afternoon
Bill went to his doctor's appointment today and we found out some pertinent information. He only has the upper portion of his lungs usable because fluid encompasses the rest, thus the labored breathing and squeaking. They took x-rays and gave him copies to avoid any hang-ups when he gets his lungs drained. He also is set to get schedule his scans for next week, since we head to the City of Hope on June 1st.
I came home from work today and found out:
*Bill was still in major pain, and he didn't ask the doctor for pain medicine (since his is gone and the insurance won't refill it, yet). I called the office, but figured that because narcotics can't be called in, I'd have to go to Irvine to pick it up... so I just jumped in the car and headed there.
*On the way to the doctor's office I made some calls and tried to figure a way for Bill to have his lungs drained before Tuesday. (The radiology department is closed for the holiday weekend.) The only way is to go to the ER.
*Luckily, his doctor prescribed the exact patch for pain meds that his oncologist at the City of Hope was going to recommend. The hard part was getting it filled, because the pharmacist had a question and needed the doctor to return her call. After two Target trips, I got my hands on the pain patch drugs!
*The doctor today also prescribed oxygen for our house to help Bill with his breathing. It seems that oxygen is not easy to come by, and the need for it must be drastic. I hadn't even had a chance to pursue setting it up when the company called to tell us they would be here at 9:00 tonight to deliver the home tank and two small travel tanks. We ended up getting the delivery around 7:00, though.
*The home health care nurse called and said Bill's blood levels were too high. He now needs to take the strong one every 12 hours instead of every 8. MUCH easier to track!
I think and hope that is the extent of my excitement for this weekend.
I came home from work today and found out:
*Bill was still in major pain, and he didn't ask the doctor for pain medicine (since his is gone and the insurance won't refill it, yet). I called the office, but figured that because narcotics can't be called in, I'd have to go to Irvine to pick it up... so I just jumped in the car and headed there.
*On the way to the doctor's office I made some calls and tried to figure a way for Bill to have his lungs drained before Tuesday. (The radiology department is closed for the holiday weekend.) The only way is to go to the ER.
*Luckily, his doctor prescribed the exact patch for pain meds that his oncologist at the City of Hope was going to recommend. The hard part was getting it filled, because the pharmacist had a question and needed the doctor to return her call. After two Target trips, I got my hands on the pain patch drugs!
*The doctor today also prescribed oxygen for our house to help Bill with his breathing. It seems that oxygen is not easy to come by, and the need for it must be drastic. I hadn't even had a chance to pursue setting it up when the company called to tell us they would be here at 9:00 tonight to deliver the home tank and two small travel tanks. We ended up getting the delivery around 7:00, though.
*The home health care nurse called and said Bill's blood levels were too high. He now needs to take the strong one every 12 hours instead of every 8. MUCH easier to track!
I think and hope that is the extent of my excitement for this weekend.
Thursday, May 21, 2009
Weekend Readiness
It's only Thursday?? Shouldn't the weekend be here by now? I have been *a little* crazy this week with Bill and his medicine... on top of work meetings, trainings, and sub plans, I am ever-so-ready for the 3-day weekend.
Yesterday, Bill did NOT feel well and told me that he thought he needed to go back to the hospital. I talked to a few people, and we figured out that one of the antibiotics was the culprit making him sick(er). It turns out that it is quite potent and you would have trouble finding one stronger. Since he isn't running a fever and the abdominal fluid is clear and not cloudy, we are fairly certain that the antibiotics are doing their job. Today was a much better day, but he definitely is still not feeling well. I have a strong suspicion that he needs to have his lungs drained again. His breathing sounds similar to a squeaky toy, and he has been sleeping propped up, which usually helps, but it's not working this time. Luckily he sees his regular doctor tomorrow, and he is the one in charge of putting through all the treatment requests, so hopefully the draining can be done sooner rather than later.
Yesterday, Bill did NOT feel well and told me that he thought he needed to go back to the hospital. I talked to a few people, and we figured out that one of the antibiotics was the culprit making him sick(er). It turns out that it is quite potent and you would have trouble finding one stronger. Since he isn't running a fever and the abdominal fluid is clear and not cloudy, we are fairly certain that the antibiotics are doing their job. Today was a much better day, but he definitely is still not feeling well. I have a strong suspicion that he needs to have his lungs drained again. His breathing sounds similar to a squeaky toy, and he has been sleeping propped up, which usually helps, but it's not working this time. Luckily he sees his regular doctor tomorrow, and he is the one in charge of putting through all the treatment requests, so hopefully the draining can be done sooner rather than later.
Tuesday, May 19, 2009
Tyler and the One-Liner
We have medical syringes up to our ears, but things are going well with the antibiotics. He still doesn't feel great, but things are definitely better. I ended up taking another half day today for a few reasons... a) I'm exhausted and can't catch up, and b) I wanted to pick up Tyler from school, but that didn't work out, because he never made it there today. He struggled getting to sleep last night, and then woke up at 5:45 this morning, which unfortunately cramped my style as I was trying to get ready. He started his much needed two-hour nap this morning at 8:00... So, we were all a little off kilter today.
I took Tyler to his My Gym class this afternoon. We aren't actually regular attenders anymore, but once and awhile we hit a class when we can. The owners are kind enough to allow us to come and go when the moment strikes. Bottom line... Tyler has gone there since he was 9 months old and still LOVES it. Today, the class was almost over and the kids had "free time" to roam, climb, and play. Tyler was happily jumping on the trampoline and burst into tears. I thought maybe he had to go to the bathroom, or maybe there was an altercation I didn't see, but neither proved to be true. I am in no way saying he's perfect, but truthfully, that is not normal behavior for him... ever. I took him in the bathroom, calmed him down, and he took a deep breath and said, "I want to go home because I miss Daddy." And the crocodile tears started again. We went into the lobby area to put his shoes on and I tried the old, "You can't get a stamp or a cup of water, if you don't finish the class." He still wasn't interested and wanted to go home. The worst part, was that every time he stated his reasoning, his eyes welled up with tears.
I'll be honest and admit I wanted him to suck-it-up and finish the class. It's a challenge to decipher between Tyler just being three-years-old and Tyler missing his Dad being around. I could (and have) over-analyze(d) the issue and really do believe that children are FAR SMARTER than the credit they are given. I have always believed that children naturally "think outside the box" and sometimes it's the teachers who squash their creativity and abstract thinking... but I suppose that's the GATE teacher coming out... and that subject is a totally different post. I am well aware that Tyler knows something is happening and things are different in our house. The thing I am not sure about however, is his ability to comprehend the issue and then correctly utilize his assessment to his advantage... but again, I don't want to underestimate. I am not sure I will ever get an answer, but I think my Mother of the Year trophy may be resting on it.
I took Tyler to his My Gym class this afternoon. We aren't actually regular attenders anymore, but once and awhile we hit a class when we can. The owners are kind enough to allow us to come and go when the moment strikes. Bottom line... Tyler has gone there since he was 9 months old and still LOVES it. Today, the class was almost over and the kids had "free time" to roam, climb, and play. Tyler was happily jumping on the trampoline and burst into tears. I thought maybe he had to go to the bathroom, or maybe there was an altercation I didn't see, but neither proved to be true. I am in no way saying he's perfect, but truthfully, that is not normal behavior for him... ever. I took him in the bathroom, calmed him down, and he took a deep breath and said, "I want to go home because I miss Daddy." And the crocodile tears started again. We went into the lobby area to put his shoes on and I tried the old, "You can't get a stamp or a cup of water, if you don't finish the class." He still wasn't interested and wanted to go home. The worst part, was that every time he stated his reasoning, his eyes welled up with tears.
I'll be honest and admit I wanted him to suck-it-up and finish the class. It's a challenge to decipher between Tyler just being three-years-old and Tyler missing his Dad being around. I could (and have) over-analyze(d) the issue and really do believe that children are FAR SMARTER than the credit they are given. I have always believed that children naturally "think outside the box" and sometimes it's the teachers who squash their creativity and abstract thinking... but I suppose that's the GATE teacher coming out... and that subject is a totally different post. I am well aware that Tyler knows something is happening and things are different in our house. The thing I am not sure about however, is his ability to comprehend the issue and then correctly utilize his assessment to his advantage... but again, I don't want to underestimate. I am not sure I will ever get an answer, but I think my Mother of the Year trophy may be resting on it.
Monday, May 18, 2009
The Fall
We are still euphoric about being home. The nurse came over last night at 10:00 and stayed for an hour. Maybe I am getting old to think that is way too late to make a house call. He left directions and a schedule though, which is VERY helpful and makes it really easy. I had to take a half day today in order to make it home to give him his medicine on time. He could *almost* do it himself, but it's on his arm and you need two hands. My mom will be the nurse tomorrow, so Bill will have to talk her through it.
He is feeling OK... not great, not horrible, but OK. He is still in some pain, and it increases exponentially when he lags on his pain meds. He slept all day and again woke up a little confused. I gave him his medication before I left this morning, and he has no recollection of it. The struggle for us is that one antibiotic is given every 6 hours and the other is every 8 hours. So, that means setting the alarm clock to stay on schedule, and they are only given together once a day. Thankfully this craziness will only be another 7 days.
Tyler and I were downstairs this afternoon sitting on the floor eating lunch "picnic style" and I heard Bill yell and then a HUGE thump followed it. It was a horrid sound that still makes my heart race. He fell trying to put his shorts on. Luckily he didn't get badly hurt, but he did get a nice rug burn on his elbow that should be a rather impressive bruise come morning. I think it scared him (us) more than anything. We learned a yet another lesson today... Bill really should not be home alone; or at least he shouldn't try to dress, shower, or get up without another person here.
He is feeling OK... not great, not horrible, but OK. He is still in some pain, and it increases exponentially when he lags on his pain meds. He slept all day and again woke up a little confused. I gave him his medication before I left this morning, and he has no recollection of it. The struggle for us is that one antibiotic is given every 6 hours and the other is every 8 hours. So, that means setting the alarm clock to stay on schedule, and they are only given together once a day. Thankfully this craziness will only be another 7 days.
Tyler and I were downstairs this afternoon sitting on the floor eating lunch "picnic style" and I heard Bill yell and then a HUGE thump followed it. It was a horrid sound that still makes my heart race. He fell trying to put his shorts on. Luckily he didn't get badly hurt, but he did get a nice rug burn on his elbow that should be a rather impressive bruise come morning. I think it scared him (us) more than anything. We learned a yet another lesson today... Bill really should not be home alone; or at least he shouldn't try to dress, shower, or get up without another person here.
Sunday, May 17, 2009
WE ARE HOME!
After a long, tiring ordeal, we are finally home! Bill actually told me to drive faster so he could get home sooner. Tyler and I got to the hospital this morning and coincidentally the doctor came in right after. His white blood cell count went down slightly. They got his counts from the City of Hope and they are actually lower now than they were two weeks ago when he went for a check-up. He looks and feels SO much better, it really is a miracle that drugs can work so quickly. That is the good news!
The results of the culture came back as a staph infection. They don't know yet if it is a "bad" staph infection (MRSA), but they will know by tomorrow. Either way, the antibiotics he is on covers all types. That is the not so good news.
We were given 2 options about the next steps:
1) He could take oral antibiotics (although they are not as strong) and see if they continue to fight the infection as needed. That may mean a longer hospital stay.
2) He could have a PICC line put in and have a home health care nurse come to our house for 8 days and administer the antibiotic through the PICC line (IV drip).
We chose the second one, and it seemed like an easy decision. Since Bill doesn't always take his medication in a timely matter, I was really struggling with the first option. Of course, that meant waiting around for the PICC nurse to come and put the line in, and then waiting for two IV bags to drip totaling over an hour and a half. They also had to adjust the line and redo the x-ray so the radiologist could approve the depth of it. Luckily we didn't wait long for discharge papers, but we still didn't get out of there until about 5:00. Joe and Ann ended up taking Tyler back to our house around 2:00. Bill and I got to spend the last three hours together hanging out on his hospital bed watching movies. Although we were both eager to go home, it was really nice to have that time.
The medication is being delivered this evening (around 8:00) and the nurse is coming at 9:00 tonight to show us the ropes and answer our questions. I think the plan is that I will learn how to change the dressing, give the drugs, and flush the line so they can avoid coming here every day. It looked easy when the nurse did it this afternoon, so it shouldn't be a problem. The hardest part will be staying up until 9:00 tonight! I am ready to get some sleep! I feel like I need a weekend from my weekend!
The results of the culture came back as a staph infection. They don't know yet if it is a "bad" staph infection (MRSA), but they will know by tomorrow. Either way, the antibiotics he is on covers all types. That is the not so good news.
We were given 2 options about the next steps:
1) He could take oral antibiotics (although they are not as strong) and see if they continue to fight the infection as needed. That may mean a longer hospital stay.
2) He could have a PICC line put in and have a home health care nurse come to our house for 8 days and administer the antibiotic through the PICC line (IV drip).
We chose the second one, and it seemed like an easy decision. Since Bill doesn't always take his medication in a timely matter, I was really struggling with the first option. Of course, that meant waiting around for the PICC nurse to come and put the line in, and then waiting for two IV bags to drip totaling over an hour and a half. They also had to adjust the line and redo the x-ray so the radiologist could approve the depth of it. Luckily we didn't wait long for discharge papers, but we still didn't get out of there until about 5:00. Joe and Ann ended up taking Tyler back to our house around 2:00. Bill and I got to spend the last three hours together hanging out on his hospital bed watching movies. Although we were both eager to go home, it was really nice to have that time.
The medication is being delivered this evening (around 8:00) and the nurse is coming at 9:00 tonight to show us the ropes and answer our questions. I think the plan is that I will learn how to change the dressing, give the drugs, and flush the line so they can avoid coming here every day. It looked easy when the nurse did it this afternoon, so it shouldn't be a problem. The hardest part will be staying up until 9:00 tonight! I am ready to get some sleep! I feel like I need a weekend from my weekend!
Saturday, May 16, 2009
Still in the Hospital
Tyler and I headed to the hospital this morning since he really wanted to see Daddy. I was not prepared to see him this morning in the condition he was in. He was in a deep sleep and had a hard time waking up. He didn't actually speak, just stared at us and closed his eyes, but not before they rolled back. He called me at 5:00 this morning to "chat" because his neighbor was snoring and he couldn't sleep. He was totally coherent then, so I never imagined it would be different when we got there. It was eye opening... not for him, but for me.
Joe and Ann were there too, so we headed to the cafeteria to get something to eat. When we got back to his room he was sitting up, talking, and we even took a walk in the hallways. He was a different person! I took Tyler home for a few hours in the afternoon, and then he played at my mom's house so I could go back and spend the evening with Bill. Sharon took over in my absence. :) I don't know what we would do without our pillars of support. Bill dozed in and out this evening, and even ate some dinner. Mark and Leslie came to visit and he had a request for playing cards. I so graciously told him that cancer or not, I would still have to give him a beating in gin rummy.
There is a possibility that he could come home tomorrow, it all depends on his white blood cell count. I did tell the doctor today that his counts are always elevated, so it may not be the most accurate measure of infection indication. He agreed, and they are going to watch his pain and try to detect how he feels as the indicator. If he seems to get better on the antibiotics then they will leave the catheter alone, but if he keeps struggling with the infection, then it will have to come out. They aren't jumping to make any decisions yet. He also stated that if he can manage the infection with an oral antibiotic, then he might be able to leave tomorrow. So, all in all, things are pretty status quo and it's a waiting game... again.
Joe and Ann were there too, so we headed to the cafeteria to get something to eat. When we got back to his room he was sitting up, talking, and we even took a walk in the hallways. He was a different person! I took Tyler home for a few hours in the afternoon, and then he played at my mom's house so I could go back and spend the evening with Bill. Sharon took over in my absence. :) I don't know what we would do without our pillars of support. Bill dozed in and out this evening, and even ate some dinner. Mark and Leslie came to visit and he had a request for playing cards. I so graciously told him that cancer or not, I would still have to give him a beating in gin rummy.
There is a possibility that he could come home tomorrow, it all depends on his white blood cell count. I did tell the doctor today that his counts are always elevated, so it may not be the most accurate measure of infection indication. He agreed, and they are going to watch his pain and try to detect how he feels as the indicator. If he seems to get better on the antibiotics then they will leave the catheter alone, but if he keeps struggling with the infection, then it will have to come out. They aren't jumping to make any decisions yet. He also stated that if he can manage the infection with an oral antibiotic, then he might be able to leave tomorrow. So, all in all, things are pretty status quo and it's a waiting game... again.
In the Hospital
Yesterday was a LONG day... for everyone. Bill was running a fever and was in more pain than usual, so after a few phone calls we knew it was inevitable that he needed to go to the hospital. Off we headed to St. Josephs in Orange. We got there at 5:55 and were in an ER room at 6:20!! I think that is record time! They ran tests and x-rays and decided they needed to admit him. The peritoneal fluid (fluid in his stomach that we drain) is infected, cloudy, and has a high white blood cell count. Around 9:00, they told us that our insurance was fine for ER there, but they had to get approval to admit him. Long story short, since he was in stable condition, they decided to transport him to another hospital - Orange Coast Memorial, which is where he had the draining apparatus put in. So basically, he is getting some really good pain medications and a crazy amount of antibiotics through an IV.
To add to our drama...
We were sitting in our ER room and they had taken blood and urine, but wanted a "sample" of abdominal fluid. He has a fancy litttle attachment that makes it easy for him to drain, but impossible for anyone else. Of course we didn't think to take a draining bag with us... lesson learned. I called Leslie, and she and Mark were able to get to our house, find the drain kit (and some Dums Dums), and deliver it to the hospital. THANK GOODNESS!
I left the hospital after a huge batch of pain meds and Joe and Ann stayed with Bill. Joe rode in the ambulance with Bill. I figured he would get far more enjoyment out of it than I would. (And I think I would have lost the arm wrestle.) Tyler was having a rough time since we initially had to take him to the hospital with us and my mom met us there to do the trade off. Sleep was my main objective when I got home a little after 10, and although it was a struggle, I got some much needed rest.
Bill is clearly not happy about staying in the hospital, especially since he is feeling a little bit better. Honestly though, we have been battling this for nine and a half months and this is his first night in the hospital, which is also probably a record. Most people with this disease end up spending a night or two, here and there for various ailments. All in all, we have been pretty lucky in his stability and pain management. I will try to update as soon as I know more info. Thank you for your prayers and well-wishes!
To add to our drama...
We were sitting in our ER room and they had taken blood and urine, but wanted a "sample" of abdominal fluid. He has a fancy litttle attachment that makes it easy for him to drain, but impossible for anyone else. Of course we didn't think to take a draining bag with us... lesson learned. I called Leslie, and she and Mark were able to get to our house, find the drain kit (and some Dums Dums), and deliver it to the hospital. THANK GOODNESS!
I left the hospital after a huge batch of pain meds and Joe and Ann stayed with Bill. Joe rode in the ambulance with Bill. I figured he would get far more enjoyment out of it than I would. (And I think I would have lost the arm wrestle.) Tyler was having a rough time since we initially had to take him to the hospital with us and my mom met us there to do the trade off. Sleep was my main objective when I got home a little after 10, and although it was a struggle, I got some much needed rest.
Bill is clearly not happy about staying in the hospital, especially since he is feeling a little bit better. Honestly though, we have been battling this for nine and a half months and this is his first night in the hospital, which is also probably a record. Most people with this disease end up spending a night or two, here and there for various ailments. All in all, we have been pretty lucky in his stability and pain management. I will try to update as soon as I know more info. Thank you for your prayers and well-wishes!
Thursday, May 14, 2009
Nine and a Half Months
We've been living with cancer for nine and a half months to the day, but that doesn't mean we are comfortable with the word, idea, or baggage that it carries.
There are those days when we wish with all our hearts that things were different. That things could be the way they were.
This was one of those days for me. I don't want to speak for Bill to say this was one of those days for him, but I don't think I am too far off the mark to assume he feels similarly.
I want him back.
I want to see him rowing a canoe on Lake Tahoe.
I want to see him napping on the couch on a Sunday afternoon with Tyler on his chest.
I want to be with him and walk hand in hand on the beach.
I want to see him sitting outside, laughing, and sharing a good time with a Maker's Mark in his hand.
I want to look at him and laugh when he makes crazy voices while reading to Tyler.
I want to see him trying to get on a hammock in St. Lucia and laugh when he falls backwards... twice.
I want him to enjoy that life again.
I want us to enjoy our life again.
I want Tyler to enjoy his dad again.
I want him back.
I want so badly to remember every detail before the beast took over, and I am desperately frightened that my mind will fail me.
Lesson of the day: Cherish each day with your loved ones. Take time to stop and enjoy the moment. You just never know what the future holds.
There are those days when we wish with all our hearts that things were different. That things could be the way they were.
This was one of those days for me. I don't want to speak for Bill to say this was one of those days for him, but I don't think I am too far off the mark to assume he feels similarly.
I want him back.
I want to see him rowing a canoe on Lake Tahoe.
I want to see him napping on the couch on a Sunday afternoon with Tyler on his chest.
I want to be with him and walk hand in hand on the beach.
I want to see him sitting outside, laughing, and sharing a good time with a Maker's Mark in his hand.
I want to look at him and laugh when he makes crazy voices while reading to Tyler.
I want to see him trying to get on a hammock in St. Lucia and laugh when he falls backwards... twice.
I want him to enjoy that life again.
I want us to enjoy our life again.
I want Tyler to enjoy his dad again.
I want him back.
I want so badly to remember every detail before the beast took over, and I am desperately frightened that my mind will fail me.
Lesson of the day: Cherish each day with your loved ones. Take time to stop and enjoy the moment. You just never know what the future holds.
Tuesday, May 12, 2009
Pain Medication
Only twenty actual days of school left; not that I'm counting (OK, maybe I am). I would note that this year has flown by, but it seems that I say that every year, so it hasn't proved to vary from the norm.
Bill went to the store with Tyler and me yesterday. He slept so soundly all day that he was confused when I came home from work. He honestly had no clue what time or day of the week it was. Although who can blame him, that is how I sometimes feel on a Monday, too. We headed to the store and Bill did really well when he was pushing the cart. Sometimes his balance is off, but the cart seemed to help straighten his gait.
Pain seems to be coming on strong lately. He has an increased amount of aches and pains, and he still has the occasional stomach issue. The past few days it seems his shoulder is giving him some trouble. I instantly think of the worst possible scenario, but after I pull myself off of the ceiling I can rationalize that he is probably sore from being so bony, and lying in bed all day (and all night) could definitely add to that discomfort. I will be checking into changing or upping his pain medications, although they just increased the dosage about a week ago.
Don't share this with Bill (hehehe), but when I had Tyler, someone gave me the advice of staying on top of pain meds. There is no reason to feel any pain, if you take the drugs correctly. I asked every nurse I had to just bring the medication every four hours, and please do not wait for me to ask. I keep telling Bill the same wise words of wisdom... THERE IS NO NEED TO HURT! STAY ON THE TIMING OF THE PAIN MEDICATION AND YOU WILL FEEL BETTER! I am literally doing everything just shy of actually taking the pills for him. However, that might not be such a bad idea.
Bill went to the store with Tyler and me yesterday. He slept so soundly all day that he was confused when I came home from work. He honestly had no clue what time or day of the week it was. Although who can blame him, that is how I sometimes feel on a Monday, too. We headed to the store and Bill did really well when he was pushing the cart. Sometimes his balance is off, but the cart seemed to help straighten his gait.
Pain seems to be coming on strong lately. He has an increased amount of aches and pains, and he still has the occasional stomach issue. The past few days it seems his shoulder is giving him some trouble. I instantly think of the worst possible scenario, but after I pull myself off of the ceiling I can rationalize that he is probably sore from being so bony, and lying in bed all day (and all night) could definitely add to that discomfort. I will be checking into changing or upping his pain medications, although they just increased the dosage about a week ago.
Don't share this with Bill (hehehe), but when I had Tyler, someone gave me the advice of staying on top of pain meds. There is no reason to feel any pain, if you take the drugs correctly. I asked every nurse I had to just bring the medication every four hours, and please do not wait for me to ask. I keep telling Bill the same wise words of wisdom... THERE IS NO NEED TO HURT! STAY ON THE TIMING OF THE PAIN MEDICATION AND YOU WILL FEEL BETTER! I am literally doing everything just shy of actually taking the pills for him. However, that might not be such a bad idea.
Sunday, May 10, 2009
An Ode on Mother's Day
To my beautiful Mom, on Mother's Day-
How blessed am I to have been born to such a wonderful mother. Everything I am, and all I have become, I owe to you. Your strength and wisdom guides me, your zest for life inspires me, and your kindness and grace warm me. I have never met another person like you, and know in my heart how incredibly honored I am to call you "mom" - you are one of a kind. I can only wish to have the light that you give, because you touch all around you with a kindred grace. I'm proud to be your daughter and could not have asked for more in a mother. I can only pray that I am able to be half of the mother you are. Thank you for everything you have done and continue to do for me and my family. I could not get through this without you.
I love you,
Jackie
How blessed am I to have been born to such a wonderful mother. Everything I am, and all I have become, I owe to you. Your strength and wisdom guides me, your zest for life inspires me, and your kindness and grace warm me. I have never met another person like you, and know in my heart how incredibly honored I am to call you "mom" - you are one of a kind. I can only wish to have the light that you give, because you touch all around you with a kindred grace. I'm proud to be your daughter and could not have asked for more in a mother. I can only pray that I am able to be half of the mother you are. Thank you for everything you have done and continue to do for me and my family. I could not get through this without you.
I love you,
Jackie
Friday, May 8, 2009
Grey's Anatomy
I have always been a Grey's Anatomy fan. In case you are confused, it is a TV show with very attractive surgeons who have serious drama and relationship issues set inside a hospital. Not exactly an original premise, but entertaining nonetheless. One of the main characters was recently diagnosed with metastatic malignant melanoma with tumors in her liver, lungs, and brain. I know in my head that Katherine Heigl (the inflicted actress) wants off the show, however my heart still hurts for her character.
I know this storyline will lead to the character's death, and I'd be lying to say there wasn't a part of me that is oddly releived. Many people assume that skin cancer is the BEST type of cancer to get. Although melanoma often originates in the dermis as a skin cancer, once it travels to the organs it is no longer considered that. I have even heard and believed, "If you are going to get cancer, skin is the lessor of the evils." I am slightly relieved her stage is terminal, because people have all of these skin cancer misconceptions, and the only way to get the word out is to have it on a media source that is widely utilized in almost every home. I am thankful the writers/producers of the show are bringing awareness to the public and making the disease so severe that people comprehend it can't be cured... even for a doctor on TV.
It is NOT just skin cancer! Protect yourself... wear sunscreen.
I know this storyline will lead to the character's death, and I'd be lying to say there wasn't a part of me that is oddly releived. Many people assume that skin cancer is the BEST type of cancer to get. Although melanoma often originates in the dermis as a skin cancer, once it travels to the organs it is no longer considered that. I have even heard and believed, "If you are going to get cancer, skin is the lessor of the evils." I am slightly relieved her stage is terminal, because people have all of these skin cancer misconceptions, and the only way to get the word out is to have it on a media source that is widely utilized in almost every home. I am thankful the writers/producers of the show are bringing awareness to the public and making the disease so severe that people comprehend it can't be cured... even for a doctor on TV.
It is NOT just skin cancer! Protect yourself... wear sunscreen.
Wednesday, May 6, 2009
Consistently Humbled
I am not a pack rat, in fact, far from it. If Bill accidentally misplaces (loses) something, I am instantly the culprit who has inadvertantly disposed of the coveted item. I clean out my closet (Tyler's too) probably more than one human actually should. That being said...
Over the past nine months we have received an insane number of cards, notes, mass cards, prayer chains, e-mails, well-wishes, the list is really endless. I can honestly say that I have saved every single one... almost obsessively. (No shock there.) I print the e-mails and sometimes even save them in my inbox to reread during the day. I read blog comments religiously and repeatedly. I have even printed messages off of Facebook. If you searched my purse, you would find a few notes of inspirational messages that are kept there for emergency emotional lapses in strength. Although embarassing, I have resorted to sifting through our kitchen trash in fear of accidentally throwing one away. The original "safe keeping" spot was in our office desk drawer that is of very average size. That began to overflow so it was time for an additional storage space. We have also now almost filled a file cabinet drawer. I may need to look into a rented storage facility. ;)
My point? We love and cherish every note, card, mass dedication, prayer list, e-mail, and comment of love and support given by our friends and family. Getting cards in the mail numerous times a week never gets old for us. Those words of encouragement mean so much more than any sender will ever know. I am humbled by the consistency of people's prayers and well-wishes. Even in the midst of a crisis, we still feel so very lucky and blessed to have such wonderful people in our lives. From the bottom of my heart; I thank you.
Over the past nine months we have received an insane number of cards, notes, mass cards, prayer chains, e-mails, well-wishes, the list is really endless. I can honestly say that I have saved every single one... almost obsessively. (No shock there.) I print the e-mails and sometimes even save them in my inbox to reread during the day. I read blog comments religiously and repeatedly. I have even printed messages off of Facebook. If you searched my purse, you would find a few notes of inspirational messages that are kept there for emergency emotional lapses in strength. Although embarassing, I have resorted to sifting through our kitchen trash in fear of accidentally throwing one away. The original "safe keeping" spot was in our office desk drawer that is of very average size. That began to overflow so it was time for an additional storage space. We have also now almost filled a file cabinet drawer. I may need to look into a rented storage facility. ;)
My point? We love and cherish every note, card, mass dedication, prayer list, e-mail, and comment of love and support given by our friends and family. Getting cards in the mail numerous times a week never gets old for us. Those words of encouragement mean so much more than any sender will ever know. I am humbled by the consistency of people's prayers and well-wishes. Even in the midst of a crisis, we still feel so very lucky and blessed to have such wonderful people in our lives. From the bottom of my heart; I thank you.
Tuesday, May 5, 2009
May is Melanoma Awareness Month
May is national Melanoma Awareness Month! We celebrated last night by having a Chinese chicken salad... just joking, we finally broke the chain and had something different.
"Screen someone you love," is the slogan for this year. "Just do it!" is my slogan for this year! Get checked... stop putting it off!
"Screen someone you love," is the slogan for this year. "Just do it!" is my slogan for this year! Get checked... stop putting it off!
Monday, May 4, 2009
Night Sweats
Today Bill had his check-up appointment at the City of Hope and thankfully Kyrie and Kylee (his 20 and 19 year old nieces) played taxicab. I felt pretty confident that they would entertain him and keep the conversation light.
It was a basic appointment with nothing exciting to report. He has probably gained a few pounds (3 or 4) in the past three weeks. (Thank you, Chinese chicken salad with extra rolls.) I sent Bill with three topics to discuss, and he remembered two of them. It's my fault... I said the list verbally and only repeated it a few times when he was in his groggy state. Why I didn't write it down is beyond my comprehension... I don't know what got into me. Next time I will pin a note to his shirt. :) Of course the one he failed to mention, was the one I really wanted him to discuss.
He is having pretty severe night sweats. Like the kind that leave the bed/pillow so soaking wet that I wondered if he spilled a bottle of water. When we first went to the oncologist in Irvine, they asked numerous questions about the night sweats and definitley showed concern in them. They went away for awhile after treatment started, but it seems they are back in full force. For someone who is always freezing, it is not easy to keep him warm and dry in the same moment. I really had no idea one could sweat in amounts that Bill manages. Hopefully his nurse will have some recommendations for us.
It was a basic appointment with nothing exciting to report. He has probably gained a few pounds (3 or 4) in the past three weeks. (Thank you, Chinese chicken salad with extra rolls.) I sent Bill with three topics to discuss, and he remembered two of them. It's my fault... I said the list verbally and only repeated it a few times when he was in his groggy state. Why I didn't write it down is beyond my comprehension... I don't know what got into me. Next time I will pin a note to his shirt. :) Of course the one he failed to mention, was the one I really wanted him to discuss.
He is having pretty severe night sweats. Like the kind that leave the bed/pillow so soaking wet that I wondered if he spilled a bottle of water. When we first went to the oncologist in Irvine, they asked numerous questions about the night sweats and definitley showed concern in them. They went away for awhile after treatment started, but it seems they are back in full force. For someone who is always freezing, it is not easy to keep him warm and dry in the same moment. I really had no idea one could sweat in amounts that Bill manages. Hopefully his nurse will have some recommendations for us.
Sunday, May 3, 2009
Superhero
"Mommy, I wanna be a superhero when I grow up. If you ever get in trouble or Dad gets in trouble, I'll fly with my cape and save you. Tyler to the rescue!"
Little do you know my dear son, that you are already my hero, my angel, my sweetness, my joy, my life.
Little do you know my dear son, that you are already my hero, my angel, my sweetness, my joy, my life.
Friday, May 1, 2009
Cancer Stories
Cancer seems to be everywhere lately. The newspaper, the Internet, TV, and there are frequent news stories about preventions and cures. Even if you hid under a rock, the topic simply cannot be avoided.
The news stories always seem to tease the possibility of a new breakthrough. Unfortunately, the big break I am waiting for (AKA The CURE), always seems tantalizingly out of our grasp.
There are numerous reports on new drugs, or old drugs used in new ways, or new and old drugs combined in creative formulas. The struggle is in the fine print of these discoveries. The number of people affected in the studies always seems very small, and somewhere in the article or story this line surfaces, "Several more years of study will be required."
I am waiting for the day that I open the newspaper and on my way to the NY Times crossword puzzle, I skim the heading that says, "Get down to your local oncologist right away because The CURE is ready and waiting!"
Obviously I'm slightly exaggerating, and it is very true that great advances have been made. Over twenty years ago my grandma was diagnosed with (and later died from) lung cancer. Her tumor was only the size of a quarter. Clearly, that diagnosis would not be the fatal sentence that it was so many years ago. Millions of people are living proof of today's modern medicine... But, I have to be brutally honest, it is just not enough... I want more.
I want him to be cured.
I want to be able to say, "Bill HAD cancer, but it's gone now."
The news stories always seem to tease the possibility of a new breakthrough. Unfortunately, the big break I am waiting for (AKA The CURE), always seems tantalizingly out of our grasp.
There are numerous reports on new drugs, or old drugs used in new ways, or new and old drugs combined in creative formulas. The struggle is in the fine print of these discoveries. The number of people affected in the studies always seems very small, and somewhere in the article or story this line surfaces, "Several more years of study will be required."
I am waiting for the day that I open the newspaper and on my way to the NY Times crossword puzzle, I skim the heading that says, "Get down to your local oncologist right away because The CURE is ready and waiting!"
Obviously I'm slightly exaggerating, and it is very true that great advances have been made. Over twenty years ago my grandma was diagnosed with (and later died from) lung cancer. Her tumor was only the size of a quarter. Clearly, that diagnosis would not be the fatal sentence that it was so many years ago. Millions of people are living proof of today's modern medicine... But, I have to be brutally honest, it is just not enough... I want more.
I want him to be cured.
I want to be able to say, "Bill HAD cancer, but it's gone now."
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