6 LITERS!

Wow! What a day! I am so glad I decided to go with Bill today. Seeing is believing. They took out 6 LITERS of fluid today... yes, 6 liters. It took about an hour to get all of it out. He is 15 pounds lighter than he was this morning. He not only feels better, but really looks like he has lost 50+ pounds. It's a little crazy!! I hope it lasts longer this time. The nurse told him he needs a standing appointment to have his stomach drained every other week. I kick myself for not taking a picture of the 6 liters, I will make up for the lack of fluid photo with A TON of pictures from our adventure tonight.

We went bowling with the Rhone's tonight. Bill has had a hankering to go bowling and we were teasing him that he should call Make-a-Wish and choose a pop star to go with him. (My vote was for Justin Timberlake.) Now, I know you are probably thinking that is a really cruel joke, but you have to remember that when you live this day in and day out, you have to laugh and joke once and awhile. Bowling was a blast! We were not very good... OK, we were pretty bad. In fact, I'm fairly certain that we were on a faulty lane. Could ALL of us really be that bad? We did have a scare, though. On Bill's first frame, he fell... yes, fell. Thankfully, he got up laughing - actually, thankfully, he got up and wasn't hurt. He'll probably be a little sore tomorrow. Mark brought an incredible symbol of Bill's draining today! Take a look at the soda picture. It's a great visual for the 6 liters. Those 3 (2-liter) soda bottles represent the amount that was removed - it's an insane amount of extra fluid.

We wrapped up bowling early and headed home. We picked up Bill's new pain prescription of Oxycontin, that he started tonight. We don't know if it's the new meds, or the draining, but he said that he felt weird. I have a feeling it could be a combo of both things. Stay tuned...

Friday at 10:30

Tomorrow is official stomach draining day! Bill was able to get an appointment for 10:30 tomorrow. I am taking the day off to chauffeur him to the hospital. He is so excited to have all the fluid drained that he measured around his stomach so he can know the difference in its size. It seems that it is not uncommon to need monitoring after the procedure (when they take a large amount of fluid) to make sure the blood pressure doesn't plummet. Bill's blood pressure has been really high since he started treatment, which is a reaction to the trial drugs, so he is already on medication. I am hoping that if his blood pressure drops that it will fall into the "normal" range instead of dropping to a dangerous level... and now you can see why I am not a doctor. My rationale tends to be skewed after my over-thinking sets in. Stay tuned for the draining update tomorrow!

No News is Good News...

Is it only Wednesday? Gosh, it seems like it should at least be the end of the week. It has been a long one! We are hanging in there and Bill has had a full week of sleeping and eating chicken pot pie. Some of you know Bill's extreme distaste for left-overs, but I have to report that he ate them today! Ron's daughter-in-law, Susan, brought us a homemade chicken pot pie and not only was half of it gone the first night, but Bill actually ate it again tonight. For someone who incessantly refuses eating left-overs, that is HUGE! It was delicious!!

Bill has his scans on Monday, the 2nd, and then on Monday, the ninth, we head back to the City of Hope for results. Again, we just pray that it doesn't grow - even staying the same size is a success. He should be able to make an appointment tomorrow to get his stomach drained again. All the fluid should be able to be drained this time. He is so uncomfortable that any relief would be welcome. I am hoping he gets the appointment for Friday or Saturday, and we can get this show on the road!

The Greatest Gift!

We had a really great weekend! Dare I say, it was somewhat "normal"? I don't even know what that word means anymore, but I'll give it a shot. Saturday, Bill woke up ready to go. He showered, got ready, and we were off to get coffee, go to the recycling center, and have some lunch. It doesn't sound too exciting as I sit here and type it, but you will have to take my word for it. We came home and he did not migrate to the bedroom. He actually stayed up until bedtime, which was around 6:30, but he stayed up the entire time! On Sunday he slept until a little after noon, then got up and showered (again, 2 days in a row!) and we went to a late lunch at Maggiano's with Joe and Ann (Bill's parents). We also ventured to the mall and got ice cream. It was a fun afternoon!

Bill slept most of the day today, and around one this afternoon (during math) I got a text from him that read, "I don't want to be sick anymore." I wanted to sit down in my chair, put my head down, and cry. I don't get feelings like that too often at work, but it just hit me like a ton of bricks today. I kept it together and moved on to the next math problem. Thankfully, I took the text in a context that he didn't intend... he just meant that he was uncomfortable and his stomach hurt. I took it differently and was ready to give the umpteenth pep talk.

Bill got the BEST gift for his birthday from a dear friend of mine, who is actually a parent at my school. It is the greatest idea (to give anyone) and so incredibly thoughtful. It is a kit to make a "stepping stone". Tyler and Bill did it together, but I mixed the cement and got it ready for them. It was big enough for their hand prints, a few "drawings", some decorations, and their names with the date. Now the trick will be to get it to set, but it should be pretty warm tomorrow. I posted a picture of the evenings festivities. It was FREEZING cold out by the time they came outside to do it. I think I chased Bill away, since he came inside, washed his hands, and headed up to bed... he so desperately wanted to get warm. It was the PERFECT gift... I am tempted to have them do a few more...

The "Haves" and the "Have Nots"

Since the diagnosis, I often feel that it's "us" against "them." Living with Cancer... or just Living. The "haves" and "have nots" if you will. Only in this case, one would beg to be a "have not".

Before cancer, we strive to be happy. Most of us live a fairly normal life. Not too many extremes. We have family and friends. Celebrate birthdays, anniversaries, holidays, and other special occasions. Make memories. These are characteristics of the Living world.

Step into the Living with Cancer world and it all changes. Patient, caregiver, or survivor... it doesn't matter, you are always a part of this world... a member of the Cancer Society.

Energetic? Not a word that gets much use. Normal? Forget it. Family and friends? So desperately needed. Celebrate? Sure, always wondering if it will be the last time. Memories? Make them while you can. These are characteristics of the Living with Cancer world.

Living with Cancer cardholder since August, 2008.

Lung Draining

The lung draining went well today, and they were able to get a full liter out of the right side. Last time it was only three-fourths of one. Thankfully it wasn't too painful or uncomfortable for him.

We are much better over here, and Tyler is *knock on wood* finally sleeping through the night again. He is just now starting to eat, so that is a good sign he is starting to feeling better. Bill and I are both waiting to see if we will be cursed with the same bug. I sure hope not!!

Poor Baby!

The good news is, there is no news on the cancer illness... the bad news is, we have another new sickness plaguing us. If you are queasy or have a weak stomach, STOP reading and check back tomorrow for a new post. You have been warned!

Right after I got home from work I heard Tyler upstairs coughing, so I knew he was waking up from his nap. This is all, of course, after my mom explained to me that she thought he was under the weather and didn't take him to school. I fully admit that I gave her a hard time for keeping him home. I went up to get him and he was whimpering in bed which happened to be just moments before throwing up all over his sheets. (Hey, you were warned!) Poor baby just got over the fever and now is throwing up! It was awful, as it is with all little kids who experience this. I would rather do anything, except get sick (I will never be bulimic), and I would have gladly taken his turn, if possible. I held him up and tried to get him aimed away from things that are hard to clean. I also called for my mom so she could grab us a towel, and she didn't hesitate to say, "I told you he was sick." Tyler could not have timed it better to be her alibi. I am proud to say though, that for subsequent sessions, he learned to throw up in the toilet. My little baby is growing up!

Grateful for Cancer?!?

I am grateful for cancer. Not for the heartache, anger, or pain; but there is one thing about cancer being so prominent in our lives for which I am extremely grateful. It is the way it has brought people in our lives together. Both Bill and I have been so lucky to have family, both near and far, contact us, pray for us, and support us in so many ways. We have been so fortunate to connect with old friends, and make some new ones at the same time. I have learned that people are so very generous and come out of the woodwork willing to help when a crisis hits. So, I thank you cancer... I thank you for allowing us to clearly see the love and support that daily wraps its arms around the three of us.

Poker Night

Judy and Adam left this morning bright and early! It was a really quick trip, in fact we never even saw Aunt Judy. I guess that means they need to come back for another (longer) weekend. Bill decided to have poker night with a few friends on Saturday night. I was ecstatic he wanted to take that on. Although he admitted that it was probably a little too much to be "the entertainer", he had a great time with everyone. Tyler and I stayed in the house and let the guys play outside. I kept explaining to Tyler that poker was for the boys outside... he didn't miss a beat saying, "...but I AM a boy." OK, he had a point there.

We are finally on the road to recovery. The cough is still plaguing us, but it is much better today. We had a lazy day and just hung out at home, then in the afternoon Tyler and I ventured out to run errands. I am off tomorrow, too, so I think another lazy day is (hopefully) in the forecast.

To Mask or not to Mask...

Our house is still overflowing with germs. Around 3am this morning, I actually wondered if I had slept yet. I think I got in a solid 3 hours. Tyler was up with a fever and a cough, and all I did was lie there and wipe his nose every time he said, "Mommy, my nose, again." What a glamorous life I lead! I wouldn't change it for anything.

Bill was up quite a bit today, trying to help Lety (our one-day-a-week nanny) give Tyler his medicine. He tried to revolt and refuse Advil until I got home from work. Luckily, the adults won, and his fever subsided for a little while. Bill asked the doctor on Monday if he should be careful being around germs or getting sick. He worries that his body will have to fight a cold instead of fighting cancer. She assured him that it doesn't really work like that and he doesn't need to wear a mask.

Aunt Judy and Adam are coming down for the weekend... actually they are probably just arriving at Joe and Ann's. They are truly dedicated to make the long drive so frequently. We love them greatly for it! I think we are going to trick them into moving here... I'm not sure how yet, but I'll figure something out!

A Call from Nurse Rachel

I am having a hard time staying awake tonight, Tyler has been getting up in the middle of the night and is trying to shake a fever/cough combo... this will be a short one.

I have not been too candid that I don't love Bill's doctor. I also know that I don't have to love him, but I greatly respect his job and his knowledge of this disease. I do however, love our nurse, Rachel. She is extremely knowledgeable, professional, and compassionate. She called tonight to check on Bill and see if his fatigue was still in full force. After his confirmation, she gave some new directions for taking Tipifarnib... He is taking a another week-long break (woohoo!) and then a week from today he will go back on the medication, but only every other day, instead of every day. Hopefully this will be the magic formula, and he'll be able to have a life while taking the pills. The new goal is to die with cancer, NOT FROM CANCER...

Abdominal Paracentesis

Our whole household is struggling with some kind of illness... not fun. Bill has slept most of the day, and is battling stomach issues. They seem to be getting better, and he ate soup without a problem tonight. I decided to search "stomach draining" since I forgot the technical name for it (abdominal paracentesis), and I was curious if vomiting/diarrhea is a typical side effect. I looked at a few websites and finally found one that seemed to pertain. I started reading it and immediately broke into a state of panic. It stated that if pressure from abdominal fluid is caught early there is a 90% survival rate, if not caught early it is 50/50. I practically started hyperventilating! I meticulously started reading every word instead of scanning the article, and I came across the phrase German Shepherd... I have never been so thankful to see I was on a website for veterinarians. Needless to say, the article didn't exactly relate to Bill's situation, and I need to stay off the Internet after taking nighttime cold medicine.

Two and a Half Liters!

Today went even better than planned. Thankfully, they were able to drain two and a half liters of fluid! They are only supposed to take two liters at a time, but he had so much and the doctor thought he could handle it, so they went ahead and took an extra half liter. He said he instantly felt better - even lying on the table as they were draining, he felt an amazing difference. He'll go back next week and have his lung drained, and then probably make a third trip to have his stomach done again. You'd think with modern medicine as advanced as it is he could just have a spigot installed... that would solve so many problems! I am going to look into that.

He and Ann went to Heroes to eat, and right after he took his last bite he ended up "losing his lunch"... literally. He thinks he probably overdid it with all that extra room in his abdomen. It actually made him hungry for dinner (which doesn't happen very often), so he ate slowly and was able to go back for seconds. He had a really good day!!

First Appointment of 2009

Today's appointment went well and Bill was able to fly solo for this one. He saw a different doctor (his doctor was gone) and felt like she actually spent time with him and his concerns... a feeling we don't always get from his current doctor. He lost 4 pounds in the past month, which surprised me. I really thought it would have been more than that. They are debating reducing his dose of Tipifarnib or even taking him completely off of it for awhile so he can take time to regain some strength and energy. I have mixed emotions about it - I know he needs to have a decent quality of life and I would never begrudge him that. On the other hand, what if that is the drug that is helping the tumor get smaller? Will he end up disqualified from the study if he goes off the drug and things don't look better on the scans? That worries me more than him sleeping day and night.

Tomorrow he is getting his stomach drained and to say he is ecstatic about it is an understatement. I have a training tomorrow, so Ann is going to play nursemaid for the day. I pray he notices a difference immediately and is more comfortable. We were told that they can get 5-7 liters of fluid from one draining. I am anxious to see how much they actually take out.

Bill was craving steak today, and when he craves something I usually drop everything to try and get it for him. Tonight we actually went out as a family and had dinner. It was the final hurrah before the three weeks of sleeping begins. I know Tyler also loves having Bill go with us. In fact he told me tonight before bedtime, "Daddy and I are gonna... well, we're gonna keep you. We both love you." What could I say to that?!? I thank God everyday for my little man.

Still Tipifarnib Free

It's official, I really enjoy the time Bill is not on Tipifarnib (the harsh drug). In fact, I am dreading Monday when he is back on it. Although we didn't do much today (I am still not feeling well), it was so nice having him awake part of the day. It is a good thing I don't need a voice to blog - since I have a bad case of laryngitis. My main goal is to get better this weekend and get my voice to at least an audible level. It's hard to teach when you can't talk... I know I just opened myself up to a world of comments about the shock of me not talking...

Before I forget - If you look on the comments of "The Snowflake" you'll see my brother's post about the pine derby and how he was the only one to make the car by himself. Although a very sweet story, I have one that shows the same set of parents doing the exact opposite. I was in 3rd grade with Mrs. Jennings, and had a science project due. I remember standing in the kitchen while my dad completed the construction on the human heart project. I really had nothing to do, but stand there and watch him do my entire assignment. I can recall thinking as I stood there, "I wonder if I'll get in trouble if I ask if I can go watch TV..." I never was brave enough to ask. For quite a time after that, my mom asked me daily what grade my dad got on my science project. The irony is... if you compared our report cards, you'd think they would need to do Todd's homework, instead of mine. hahaha - just kidding, Todd!

The Paradox

Before I get into the nitty gritty, Bill has a basic check-up appointment at the City of Hope on Monday and then on Tuesday he is set to get his stomach drained. His abdomen is such a protrusion that he just looks uncomfortable. His size 34 jeans absolutely hang on him (making him a 32) which is really small for him. The weight loss is unfortunately mounting, and I believe he is hovering around 50 pounds total. He told me yesterday that he knows he has lost more weight... not great news, and I'm sure after the draining it may seem like more. I hope and pray he will at least be more comfortable, which may make him more mobile. This week is his break from the harsh drug, and his energy and color have both drastically improved. Which leads me to "the story"...

Background: Since the diagnosis, I have learned to bite my tongue and keep my comments to myself. (Shocking, I know.) I have definitely walked on eggshells since D-Day. (Translation: I have refrained from many of my naturally sarcastic, sometimes passive-aggressive, under my breath, comebacks/comments.)

The Male/Female Paradox
Friday and Saturday Bill got out of the house with us to meet his parents and ate on both occasions. Sunday, I asked if he wanted to go to breakfast or get a bagel and was, not so graciously, denied. Rarely do we venture out of the house when it is just the 3 of us. It takes meeting someone, an obligation, or the cleaning lady coming for him to leave the house. Well, let's just say that I didn't hold back my frustration regarding the pattern I was noticing. Tyler and I, alone, were not worth the effort or obligation. Now, I know deep down inside that is far from the truth, but after all, I am female and had the whole thing rationalized. Needless to say, that started a long conversation...

Fast forward to Monday... Bill gave us all of his energy when he JOINED US going to the grocery store! That doesn't sound too exciting or difficult, but trust me, it was a huge sign of affection. When I got home on Tuesday, he had just gotten out of the shower and asked if we (Tyler and I) wanted to drop off his paperwork at his oncologist in Irvine and then head to Maggiano's for dinner. I almost fell on the floor! Just him showering usually expends all of his energy. We had a blast and were able to use one of our much appreciated gift cards... which made it even better! He ended up not eating his pasta and was freezing cold the entire time we were there, but he bravely stuck it out. Yesterday, he was awake the majority of the day and made phone calls to insurance companies, doctors, etc. Today he slept until 3:00, but was awake and downstairs all evening with us. It has been a drastic change of events in our household. It's so nice having him around more. I pray he is able to maintain some of this stamina when he goes back to taking the harsh medication. His words, "I have to get out of this funk." I could not have said it better myself... I guess it took my female rationale to get it through to him that he is not living... Haven't we learned that life is far too short??

The Snowflake!

The homework assignment is complete, and we survived! I actually let Tyler paint it... ok, I helped a little, but it was mostly his doing. After it dried, I started to plan the accessories, and realized that we don't have any glue! I guess since Tyler really isn't to the craft stage yet, and I am not exactly Martha Stewart, glue never tops my shopping list. Tyler and I had just gotten home from Target, too, and the last thing I wanted to do was pack him up and go back. Thankfully, I called our neighbor and they were able to save me the trip back to the store.

I have been so forgetful lately - I swear if I don't write things down I absolutely do NOT remember. I have felt this way since the day I found out I was pregnant with Tyler, only now it is actually worse. I took Bill's prescription and had a refill made of his pain meds (of which he is completely out) and forgot to go back and pick them up! I did all my shopping and as we walked out I thought, "Did I get everything?" Duh - No - I forgot the drugs... they were the main reason I went there in the first place! Definitely a blond moment!!

We have had an incredible couple of days, and I so look forward to writing about them and how we got to this point. I want to give my full effort, and I am not feeling well with this nasty cough/cold. I promise tomorrow I will post an update... let me just say that it is yet another lesson dealing with the vast difference between the communication efforts of men and women.

The Homework Assignment

We got our first preschool homework assignment today and my first question was, "Where are the directions?" It is a big paper snowflake that needs to be decorated... Those are the directions. For a normal person, that would probably suffice, but for a type A perfectionist, that is just not enough. I need directions, guidelines, parameters, something for me to read and reread to make sure I ( I mean we) complete my (I mean his) assignment correctly. Just to show the genetic link to my obsessiveness, my mom (who takes and picks him up from school) said to his teacher, "This is going to take 3 trips to Michael's to get this finished." His teacher so sweetly suggested that we can simply decorate right out of the pantry with macaroni, etc. I only wish it could be that simple... I'll be bringing supplies home from work tomorrow to decorate my (I mean his) snowflake. I'll post a picture of my (his) final product when it is finished.

Anger, and Bitterness, and Patience, Oh My...

Today ends my two-week vacation... I am both happy and sad about it. I have this heavy feeling of, "How do I do all of this AND work full time?" But the other side of me knows that I need to go back to work to maintain some sanity. Kudos to stay-at-home moms, because it is a tough job, and I honestly don't think I have the wiring to be home all day. Don't get me wrong, I love my 13+ weeks off a year, but I always know that I 'get' to go back. I have been having dreams about school, so I know I must be somewhat ready to return. I am far more patient (and a better mom) when I am working. Although we had a great weekend, I am finding that I am angry about our whole situation. Not angry at Bill, but bitterness toward cancer, I guess. My fuse is shorter and I have to make a conscious effort to lengthen it. I don't like living that way, and it is not fair to Tyler or Bill. Hopefully going back to work will help me... *fingers crossed*

Idiosyncrasies

I am not one to make resolutions, however I do tend to pay attention to some of my idiosyncrasies... I am NOT committed enough to do anything about them, but Tyler went to bed early tonight, and once my mind got started, I could not turn it off. I felt compelled to list them.

Sometimes I eat ice cream out of the carton… I drink way too much caffeine… I obsess over the Pottery Barn Kids catalog… I never eat breakfast… I am deathly afraid of failing or even getting a ‘B’… I compassionately hate peanut butter… My perfect career would be a full-time student (teaching is the next best thing)… I obsess over strollers… I love Tiffany box blue… I do not think childbirth was that painful... I’m very picky about my Starbucks coffee… I over-think everything… I hate it when people say irregardless (it’s not a word!)… I have always voted republican… I love jeans (good jeans)… and purses… and shoes… I can’t stand female sports casters… I despise emptying the dish washer… I can eat cereal for every meal… I love e-bay… I think being a food server should be mandatory for everyone… I never take out my contacts… I could not survive without TiVO… I love my family so much it physically hurts…