Party of the Year

The scans went well today, and we will get results at the City of Hope appointment on Monday. Bill got the approval for the brain scan today and is sure he made an appointment, but can't remember the time. Ann doesn't remember that he ever made an appointment, so he'll call in the morning. At least we do know that he got approval and it will happen before Monday. I am so nervous for Monday, and I know Bill is too.

I will post more details a little later, but Bill is planning a huge party for ALL of our friends and family. It is April 25 (mark your calendars); the time is not yet set. In case you talk to him personally, be prepared for his comment, "I am planning my above-ground funeral." It's his standard explanation, so please don't be shocked or offended. I like to say that it's our "Thank You" party to all of the amazing people who have stepped up and helped us so much. He is so excited about the planning stage that it is giving him a reason to get out of bed. Thankfully, Mike (his best friend) is handling the details... all of them. It started out as a mini-reunion for their class and Bill decided it's the perfect time to see how many people fit into our backyard. I think it will be an Open House of sorts. People can come and go, say a quick hello, or stay all day. We are going to heat the pool (kids are very welcome), and we have many other activities for big and little kids. Anyone and everyone is invited! I will post more details when things are set in stone.

Scans Tomorrow

Bill had a rough start to his day, but it ended on a very happy note. He is having some trouble with his short-term memory. He gets very frustrated with himself and called me today at work (actually in my classroom, not on my cell phone) quite upset because he was having trouble remembering things. He couldn't recall the things he needed to do today and then talking to me he blanked on the appointments he had already made. The only thing I asked was that he try to avoid Thursday, since I have Open House. This could happen to anyone, but he completely spaced that and made the appointment for Thursday. That wouldn't be a big deal for a regular draining, but since it is a 5-6 hour procedure, they knock him out, which means he won't be coming to Open House; something he wanted to do.

Bill gets his scans done tomorrow, so this afternoon we went to pick up the special beverage he must drink, and he had to have blood work done. Then we stopped off at the Claim Jumper main office and he was instantly in a great mood. It's amazing to see him in his element. It was so great to see everyone there and the instant spirit boost was perfect! Tyler also fell in love with Carolyn... who just had her son move out on his own for the first time. They were a match made in heaven. It was so cute to see him stare at her longingly. He left there with a stuffed lion, cookies, and both pockets full of candy. He kept talking about how much fun "that place" was and wanted to make plans to go back.

I e-mailed Rachel, Bill's nurse, about the hallucinating, and she is talking to his doctor about ordering a brain scan. Hopefully it can be done before our appointment on Monday. It will be a nail biting one, with scan results. We are both extremely nervous this time around.

Sunday Post #2

I took Tyler up to bed about a half an hour ago because he fell asleep on the couch around 5:00PM. I tried waking him up at 5:45, 6:10, 6:30, and then I gave up. I am going to take some crackers up to bed with me, so when he gets up at midnight, starving, I am prepared. Hopefully he stays asleep, he obviously needs it.

I don't know the preschool curriculum, and frankly, he asks me to teach him read and I keep telling him no. I don't think that at age three he needs to be reading yet. The preschool time of life is so incredibly short, I just want him to enjoy it. Besides, then he would know how to read the "guide" on the TV, and he could figure out that Wow, Wow, Wubzy was, in fact on, but Mommy said it wasn't. Today we were at Costco and I was buckling him in his car seat and he asked me, "Mommy, where is the Leaning Tower of Pisa?" I didn't realize preschool standards were so rigid! ;)

This Weekend

It's been a great weekend! Saturday morning, Bill got up at 5:30 (yes, that's AM), and went and got doughnuts and stopped at Starbucks, too. We went and ran a few errands and visited his parents, since Joe just had knee surgery. We ate lunch and then ventured home. We had a really nice evening at home. Today was also eventful! We did some basic gardening and Bryan (our neighbor) came over and helped Bill do something to our grass... not really sure what they did, but Tyler and I replaced some flowers, and he got to plant his yearly vegetable garden. I always have him pick out a few different types of seeds and the poor thing always wants to plant watermelon, and it never grows. At least he's persistent! We also planted peas, carrots, and radishes. We went to lunch with Bryan and Nyra, and then headed to Costco. Bill did really well being up and even walked around far more than usual. He hasn't been sleeping as much, in fact, he commented on Friday when I got home from work that his day seemed unending. I was quick to remind him that was because he was actually awake.

A few weird instances have happened lately with Bill and hallucinating. First, he got up Saturday at 2:00 AM to go downstairs to eat. That has nothing to do with hallucinating, but nonetheless, it was a peculiar incidence. Then at 5:30 when I sensed he was awake, I asked him why he wasn't sleeping. He commented that he couldn't sleep because the TV was on. He also added that since it was on, he was forced to watch a "do it yourself" show. In case you haven't figured it out... the TV was never on. As soon as I said that it was off, he stated that the show and everything he was watching was so real that he could not have been sleeping. He has had two other occurances with hallucinating. Hopefully it's the drugs talking, since it always happens right as he wakes up... kind of in that "in between" stage before fully being awake.

Bill goes for his two month CT scans this week, and will hopefully have the permanent drain put in. It is a 5-6 hour procedure, but thankfully they put him under. I have Open House on Thursday, so he has strict instructions to avoid that day. We shall see...

Video Nightmare!

I am so sorry for all the video confusion. It's so hard to test because it always works on my computer. Go figure... I tried to convert the video file to a program that is used on the blog, but couldn't manage that, so I uploaded to YouTube after creating an account. Well, I marked "private" on my account and that meant people couldn't view my videos... it should work now, if it doesn't work on here, I do have it on my Facebook page. Whew, that was a lot of work!

soccer3 3 09

Trying to post a new one. Just testing...

Move Over David Beckham

Getting this video uploaded was not an easy task tonight, so my post will be short and sweet! Tyler loved soccer today, despite his objections on our way to the park. Bill and my brother went with us, so I think Tyler actually whined less with them there. It was just about the cutest thing I have ever seen! This clip is unfortunately not the best one, but it was uploaded and ready, so I went with it. I'll apologize in advance for my videoing skills, but consider this a warning if you are prone to motion sickness. The best video is of the "game" they played at the end of the practice. Tyler even got to pick their "team" name - The Elephants. I will get some pictures up tomorrow (too tired tonight) that are hilarious. I'll just tease you with one thought... I lost count of how many flowers he picked for me in the short 45 minute practice.

Other People...

What a day! Joe (Bill's dad) had surgery on his knee today. While we were in Seattle he took "trip" down a few stairs and hurt his knee. I just have to add, that you know he was in horrific pain if a former fireman called 911 after the fall. He was carrying a bowl of spaghetti and didn't spill a drop! That's what I call dedication. (Kudos to Ann for taking on the caregiver position... also a distinct form of dedication.) To directly quote Joe, "Please say a prayer for me; my golf game depends on it." I'd like to add Ann to that prayer, she wants Joe golfing again soon, too! Tuesdays just aren't the same for her.

I got a call today from Apryl, my close friend, and her 5 month old, Kaitlyn, was admitted to the hospital today after being constipated, and they found blood in her stool. After hours of tests, they found out her colon is swollen and her intestines are inflamed. Last word was that they may do surgery or flood her with a constant IV for a few days to get the swelling down. Either way, the poor baby is in pain, as are her parents. Tyler and I took them some dinner at the hospital, and Tyler actually got Kaitlyn to stop crying for a few minutes. It always amazes me how children instantly relate to other children. I don't care how old or how young... seeing your baby suffer is the deepest pain one can endure.

Tomorrow is soccer day! Tyler has talked all week about how great it was, and how much he loves Coach Johnny. I can't wait to see if he partakes this time. I will definitely be taking my camera. *Fingers crossed*

Tape

I follow a few blogs of different people, some cancer patients, some caregivers, some former caregivers, and some really great moms. (A few fall into more than one category.) Every once and awhile I "meet" new friends and a wonderful supportive relationship forms. I am so grateful for the kind hearts of so many people all over the country who have reached out to us. One new friend recently asked me if Tyler had found the (Scotch) tape yet. At first I was unclear as to what she meant, but ironically enough, we have played with the tape daily as of late. Long story short... it is common for kids when dealing with tragic situations to use tape while playing... it is their mechanism for fixing things that are broken... be it a toy, a chair, or a daddy.

Draining

Nothing exciting to report... I now crave boring and simple. I think Bill definitely needs to have the permanent catheter put in. The fluid was drained four days ago and it is already quickly coming back. There is a visual difference in just this short time. I retreat to my shaving analogy. Once you start shaving, you really can't stop... it seems as though the hair comes back thicker, darker, and faster than before you started. (Maybe this analogy is more for the female crowd.) The fluid comes back exponentially each time. Hopefully the permanent drain will come sooner, rather than later, and he can have constant relief.

Soccer, Anyone?

My apologies for not posting for a few days, but I went out last night with a girlfriend for her early birthday. We were so wild and crazy that we went to Fridays (about a mile from here), had a couple drinks, some appetizers, and I was home and in bed when the clock struck 10. Apryl and I were both yawning at 9:20 and eager to get the check. Sad, I know. It was really fun, though and we decided we need to do that more than once every 2 years.

It was a very mild weekend. Bill is definitely feeling better and his appetite is coming back tenfold. When I got home at 9:40 last night, he came downstairs and made himself a hot dog and then ate 2 jello packs. That is usually his diet for the entire day. We went to breakfast Saturday (he was craving country fried steak from Knot's Berry Farm) and he had taken his pills right before we left. By the time we arrived, the medicine had kicked in... he was high as a kite! He ate his breakfast and fell asleep in the car on the way home. It was actually entertaining, and he really knows how to ham it up!

I took Tyler to his first "Multi-Sport" class on Friday. They play 2 weeks of soccer, 2 weeks of baseball, and 2 weeks of basketball. It is through the city and most kids in the class were 3-years-old. Imagine 20 children all age 3 (each with their own ball) on a soccer field. A handful were crying (mine included) and a few were attached to the leg of a parent (mine included). He only wanted to play on the equipment on the other side of the park. I left my camera in the car (again, not mother of the year), but I decided to take a picture of him once we got back to the car. Look closely at his red face and swollen eyes. He told me he couldn't wait to go back next Friday... we'll see!

7.8 Liters!

Well, today was draining day and they took 7.8 liters! The record amount thus far. They counseled him today on getting a permanent catheter put in so he could drain it himself... or I could do it for him. It sounds like the ideal solution, but it greatly increases the risk of infection. He was given a DVD to watch, so I will have to check it out for him.

Bill told me last night he was getting the urge to cook again. He hasn't been in the kitchen for about a year. Even before he was diagnosed, he stopped cooking because he always felt so sick. (Hind sight is 20/20.) I can tell that he is feeling much better being off the trial medications. Another clue he is feeling better is that he went to the grocery with me today, and I spent twice the amount that I usually do. Everytime I turned around he was adding to the cart. He is actually excited to eat! A HUGE step! He is calling the City of Hope tomorrow to discuss if/when he will start the drugs again. I think he has a plan that has been brewing in his mind, but I have not figured it out yet. It is hard to tell someone you love with all your heart that it is OK if he wants to stay off the meds. Quality far outweighs quantity...

St. Patrick's Day

Happy St. Paddy's Day! I wish I could say we celebrated with delicious room temperature green beer, but it has been (ahem) a few years since my college/single days.

I feel like I am finally getting caught up after being gone for the weekend. Bill slept all day today, but did come down for some dinner tonight. He even called me while I was at Target and asked when I would be home. That is his code for saying, "Hurry up. I am awake and bored." He has enlisted his dad to possibly go out tomorrow to try to get a glimpse of Airforce One as it lands in Orange County. I told him that was a great idea, but I wasn't leaving work early to bail them out of jail. He even called our neighbor (Costa Mesa Police Dept.) to have him investigate the timing of the motorcade. I hope they get great pictures for me to post!

"Hay is for horses, but grass is cheaper." That was the response I got from my three-year-old this evening. I know he heard it elsewhere (it sounds a lot like my mom), but my goodness, he is still THREE! I am constantly amazed how he can sound so much like an eighty-year-old man. You just never know what will come out of that boy's mouth... it scares me more and more each day.

WE ARE HOME!

We had a wonderful time in Seattle and are now home. It was relaxing and exciting all at the same time. It rained... no shock there, but Sunday morning we awoke to gigantic snowflakes! It snows maybe once a year, so we felt very privileged. It ended up getting sunny Sunday afternoon, which was perfect timing for our outing to Pike's Market. I got to see where Bill lived in Redmond and we drove around some amazing neighborhoods. We didn't find Bill Gates' house, but not for lack of trying.

The Nordstrom was everything I thought it would be... and more! I luckily had a few hundred dollars on a gift card (and added a little) to feed my purse obsession. Bill got some much needed new sunglasses. We also got him a new wedding ring for a whopping $25. It is a basic sterling silver ring that is very similar to his platinum (original) one, except the new one actually fits. Some of you may recall the very start of the blog I mentioned a wedding ring story... complete with dumpster diving.

We had an amazing dinner at a very unique restaurant that was a recommendation from someone at work (thanks, Jenner). It is called The Pink Door, but it doesn't have a sign, it's just a pink door.... hence the name. We had incredible risotto, and Bill was able to keep it down, which is more than I can say for the two days prior to that. He was a trooper on this trip! I let him lead where and when we did things. We honestly did everything we set out to do. I slept more than I have in the past week, and Bill slept less than normal, so we balanced each other nicely. He ended up a little swollen after the plane ride, then walking so much added to his puffiness. Now that we are home, that should go down quickly. The next few days will probably be spent sleeping, but he's pretty excited to have his stomach drained on Thursday.

Rain, Here We Come!

We are headed to Seattle in the morning! Today was a pretty good day. We are both really excited about the trip. I am not taking the computer, so I'll have to wait until Monday night to post our happenings. Since Bill won't let me get the Internet on my phone... it's a long story, I won't even be able check my e-mail. I am already going through withdraws. I can always get it in the room, or pay for a day of the Internet on my phone... the wheels are turning. Where there is a will, there is a way. Have a wonderful weekend... I know we will! :)

Seattle

We are headed to Seattle on Saturday morning! Yesterday was a rough day for both of us. Bill was in pain and really down, which has a domino affect around here. We had a lot of tears and a brutally honest conversation about life, marriage, and death. Words were said that will forever resonate in my head. The bottom line is... Bill feels he doesn't have much time left. That is why I got online last night and booked a trip to Seattle - we leave Saturday and come home Monday evening. We are staying in an amazing hotel in the downtown area that brags about their sheet count. It is walking distance from the original Nordstrom, which stands five stories high! Who needs the Space Needle when you have a five story Nordstrom? Tyler is staying with my parents, so it should be a nice long "adult" weekend.

Classic Car Auto Trader

It's official, I am out of the Mother of the Year contest. I am pretty sure I was out long ago, but today sealed the deal. I am fairly certain the rule book states that you cannot threaten to drop your child off at the fire station... Once the child can talk, I don't think the "safe surrender" rule applies. Mind you, his tantrum (which is not a normal characteristic for him) was the result of not getting a 2 ounce cup of water because he refused to say "please"... Good times.

Bill ventured out with Tyler and I today. To do what, you ask? What else - get the classic car edition of Auto Trader. The comments from yesterday's post were the perfect dose of motivation. I have a hunch he wasn't happy I wrote about all the details of our conversation, but I knew he would need a little boost to get started, and the comments did a world of good for his spirits. I have to admit, that was a part of my plan, since he could use an exciting reason to get out of bed!

I am off to enjoy a glass of wine (I earned it today) and go to bed!

One more thing - Happy birthday to my dear brother! I can't believe you are 29 (again). Which makes me 24... again.

City of Hope Recap

We went to Bill's appointment at the City of Hope today and it went well. His blood work all came back fine, but they showed concern for his extreme fatigue and the fact that his hands (and sometimes toes) go numb. It seems to be only when he gets cold, but he practically has to put them in boiling water for them to thaw and gain feeling. Come to find out, that can be a result of the medication - the trial drugs, not all of the other meds. The consensus was to go completely off the two trial drugs while they contact the doctor (on the East Coast) to see what they should do next. He has never taken a break from both drugs, just the harsh one that he takes every other day. The break cannot exceed two weeks, or he must stop the trial all together. They are hoping he gets some stamina back and feels a little more human. We will check in with them at the end of the week to see if there is an improvement and possibly go back on the medications. Only time will tell...

On the way home, Bill cornered me and said he had something serious to ask me. I guess it's not really "cornering" since we were in the car, but he figured I couldn't escape if I was behind the wheel. I also discovered that he was not really asking me anything, but telling me about his idea. I know it is in the back of his (and my) mind that the trial may not work forever... Long story short(er)... Bill has always wanted an old (classic) 1960ish Lincoln or Cadillac convertible. He said if he only has a short a time left, he wants to drive his dream car while he can. So, his plan is for us to sell his car and get an old (classic) one... can you detect my excitement? I couldn't exactly recommend Make-A-Wish, (although he could probably pick a superstar, like Justin Timberlake, to cruise around with him) but I ended up agreeing to his desire for an old (classic) car. How do you say 'no' to a guy requesting his "last dying wish," as he so delicately put it?

What to Say?

People stress about what to say to Bill or me when asking how things are going, or even asking anything at all. It is not an easy situation, and no one knows the standard thing to say, but I really think it's the last thing a friend or relative should ponder. What IS important (more important than the actual words you might say), is the effort to simply say anything. And if that "anything" isn't about cancer, that's even better. If cancer is not in the room for even an hour or two, that's a gift. As time goes on, as things become more serious, those hours without cancer become ever more precious. Please don't worry about what to say... or saying the wrong thing... One should never become an expert in what to say in this situation.

7 Liters!

The draining went well today, and so far there isn't any unusual swelling, like the last time. **knock on wood**

They were able to take 7 liters, so I took a picture of it. I hope I am not offending anyone by posting it. Bill had a little pain when the doctor inserted the catheter into his abdomen. It made him jump and call out in pain, which in turn, made me jump and call out in (sympathy) pain. My heart was racing... I almost asked them to take my blood pressure too. After that though, the draining went quickly. Last time he felt kind of shaky when walking out, so we watched him closely and the nurses had him drink some juice. He was still a little wobbly when we left, but by the time we got home he felt better. He is really groggy again and slept this afternoon after we got home. He came down for dinner, but I could tell he wasn't excited about it. He just needs to relax and sleep for a day or two in order to keep the swelling down. All in all... a pretty productive day!

Nothing to Report

Today was a relatively easy day, which is a nice relief! Bill slept all day while Joe and Ann watched Tyler, and of course, cleaned the house, trimmed the trees, replanted plants, cleaned up the garage... etc. They even had dinner on the stove ready to go! What a wonderful treat!!

Bill took his anti-nausea medication today (which he skipped yesterday), and I have a feeling that is what caused the extreme grogginess and drowsiness. I know what you are thinking, Why did he skip the medication? Trust me, I thought (asked) the same thing. He took it today and wasn't nauseous... I think I see a connection! :) He made it downstairs for dinner tonight and did pretty well eating, despite the incredible urge he had to close his eyes.

We go to have his stomach drained tomorrow. Our appointment is at 10:30, so I get to take Tyler to school in the morning. It probably doesn't sound exciting to most people, but I never get to take him since I leave so early. I asked him if he would show me things in his classroom, and he willingly offered to teach me how to play. I'm not sure if I should be insulted or not...

Starbucks

Today is a new day! That was the mantra on the door at Starbucks this morning, and I decided I am going to take it seriously. We had a "normal" night after the blood incident... I'm still unsure how to define normal. I am taking tomorrow off to go with Bill to the draining. He starts his diuretic today, so hopefully some pressure will be relieved with it. Thank you for all your prayers and well-wishes... we need all we can get!

Nightmare!

Well, we had quite a scare tonight. Bill felt nauseous the majority of the day and had a hard time eating... not totally abnormal, but still worrisome. His nurse called today and told him the doctor was ordering a diuretic (which we asked about months ago) and a potassium pill to add to the repertoire. Easy enough, the new additions are ready for medicine time tomorrow morning.

I was downstairs making him some soup at the stove and heard (him) banging on the floor to get my attention. That alone threw me into a panic. I did manage to turn the stove off! I raced upstairs, and he told me he thought he needed to go to the doctor. He threw up blood! Although frightening beyond belief, he did say he thought he felt better afterward. I made two phone calls, one to get my mom here, and one to Joe and Ann to have them meet us. I then called Christina (a nurse at the City of Hope) and she gave me some guidance as to what to do next. I called the nurse triage line at Hope to let them know we were coming, and they told me that they were unable to take new patients since they didn't have any beds available. NIGHTMARE! By this point, Bill was downstairs and was refusing to go to a random ER, especially since he hadn't eaten and wanted his soup. Well, that was a pretty good sign, and the nurse on the triage line said that we could watch him, and if it happened again, to head to the nearest ER. At this point I had my mom and Bill's parents headed to our house and no hospital visit planned. It all worked out... my mom stayed until Joe and Ann got here. They are spending the night... just in case we need to go somewhere in the middle of the night. Phew!! I am expecting his doctor to check in with us in the morning. Bill is also scheduled to have his stomach drained on Thursday. Hopefully that is the only excitement the next few days. I have had all I can take for the week... and it's only Tuesday!

Rain Check?

You know when you get your car washed, how they offer you a 24 hour guarantee? (If it rains within a day, you can get it washed again for free.) Does that rule stand when family washes your car? It rained today on my way home from work. I practically tried to drive between the rain drops to save my shiny new car wash. Then I ran an errand this evening and took Bill's car to preserve mine. Since his was already out of the garage and rained on... and needed to be started, since it never gets driven anymore.

Over the weekend, Bill's cousin, aunt, and parents washed our cars. Yes, our company washed, not one car, but the beast that I drive too. It really makes you want to come visit, doesn't it? We make you feel right at home... literally.

Another Weekend

I apologize for the shortage in posts, but Bill had family visiting, and things were a little crazy! We had everyone here yesterday and had the most amazing meal together. Tyler got to meet one of his cousins (that he's never met) and was in heaven playing with him. Instead of calling him Owen, Tyler called him "My Cousin" all day. Then at one point Owen was apparently promoted, and Tyler called him "Brother". It was too cute!

Bill stayed up all day yesterday, but looked pretty beat toward the end of the day. He went to bed last night and has been there ever since. It will take a few days for him to recover from all the excitement... but I know it was worth it for him to spend time with his family. We are just relaxing (procrastinating) today and gearing up for yet another week!