Disneyland

Well, 2008 is almost to a close and I must admit, it has been a rough year. I desperately look forward to a new year and positive mindset! We went to Mickey's house today and Tyler had a great time. He first went to Disneyland when he was three months old. Granted, we just went to eat at Club 33, then went right back home, but he was there. I doubt I will stay up until midnight; I am years past the New Years party scene, but I wish everyone a happy, healthy, and safe 2009.

My Precious Two and a Half Hours

Tomorrow is New Year's Eve and Tyler and I will be off to Disneyland with my family for our annual Club 33 New Year's Eve Day outing. Say that ten times fast. Bill is going to sit this one out. I can honestly say that I have hardly seen/talked to him in the past 5 days or so. He has literally slept since the day after Christmas. I go upstairs every so often to force feed him, tell him random things that are happening, or just to see if he needs anything. I took Tyler to school today to attempt normalcy while I'm off work, and although it was only two and a half hours, I didn't know what to do with myself. I got a coffee, grabbed my paper (which is now delivered!), and did my crossword puzzle while getting a much needed car wash. Then I went to Target by myself!! It has been three years, three months, two weeks, and four hours since I have been to Target all alone! Not that I am keeping track. :) It was a delightful two and half hours. Then I picked up our three-year-old who has recently decided to boycott naps and is able to stay awake in his bed for an hour to pretend he is sleeping. I'm slightly devastated by this new turn of events in our household. I don't care what time of day it is, if you put me in my bed for an hour with a few stuffed animals, you could not keep me awake at any price. Why is it that a child fights sleep vehemently, and the majority of adults crave more, yet deprive themselves? The irony... I suppose I should go to bed now instead of complaining about my lack of sleep. Again... the irony...

Hind Sight...

I have been thinking a lot about this time last year and hind sight really is 20/20. I can remember right before Christmas a year ago we packed up Tyler in the stroller and walked around with our neighbors looking at the lights (our neighborhood has a contest). Bill reluctantly agreed to go, but I had to push the stroller home (uphill) because he was spent by then. He was also having an odd shortness of breath at that time, but it would come and go. There are actually numerous situations I can now recall, far before he was diagnosed, when he was lethargic and tired easily. He told me on Christmas that he wondered if he would ever get his energy back. He also said that sometimes he doubts himself and thinks he is just being lazy. Then he tries to do something and is quickly reminded that it is not laziness, but the disease. He also commented that he doesn't remember what it is like to feel healthy. To be honest, I don't remember what it is like to be with someone healthy... It has been a long road...

The Birthday

Bill had a nice, quiet birthday, which is just what he wanted. Yesterday, he never made it downstairs, so just him spending the morning with us was a treat! We went to lunch at PF Changs (his request) with his parents, sister, and three nieces. He liked the idea of the Nintendo DS, however wants to play one before he rips it open, in case he wants to return it. I think he is afraid he won't use it enough to get our money's worth. I still think he should open it and try it; I know he will get addicted to it... which is exactly my plan. Afterall, he is the one who turned me on to the NY Times Crossword puzzle each day.

My mom and Ron gave us a trip of our choice for Christmas and included the babysitting. We debated Hawaii, but the flight is just too long, and Bill really shouldn't be in the sun. Especially since his type of cancer originates from the dermis. Since he used to live in Seattle, and I have never been there, he wants to take me to the rainy city. I rarely leave the Orange Curtain (as some would say), so this should be interesting! We will probably schedule it for mid-January around the doctor's appointments, stomach draining, and medicine schedule. I want to go when he has his week off the harsh drug to give him a few extra "awake" hours while we are gone. If anyone has any fun suggestions of what to do or where to stay, I'd love to hear them.

The Birthday Eve

Tomorrow is Bill's birthday! I love birthdays (as long as it is not my own) and I even tried to get him to open his presents today. His parents and I got him a Nintendo DS system and a few games. He has never really been into the traditional video games, but likes the "puzzle" type of games. It is a nice small system that can be used anywhere, so hopefully he can play it lying in bed or on the couch. As long as it takes his mind off the reality for a minute or two. Ssshhh, don't say anything to him before tomorrow! We are going out to lunch tomorrow to celebrate!

We had a wonderful Christmas, however the day was long... for everyone. We spent a total of three hours on the freeway... in the rain... in traffic. Tyler had a blast and it was once again proven how insanely fortunate (and extremely spoiled) he remains. Christmas is an entirely new experience living it through the eyes of a child. We were all in a daze by the end of the evening, but I would not change one minute of it!

Merry Christmas Eve!

We have had a crazy few days leading up to Santa's visit. I have not had any extra time to post, since I use my "after hours" time to wrap. Luckily I signed up to help Santa this year, and Bill gets the year off. We went to my uncle's tonight and Bill did really well, despite the fatigue and pain. (He doesn't take pain meds if he wants to stay awake.) I am so excited for the morning and for Tyler to see all the fun things Santa is bringing him. We have a crazy day tomorrow, but I (and our families) have given him a free pass to ditch the festivities if need be.

I think it is safe to say that it is universally a crazy time of year! I am again losing the Mother of the Year award for 2008. (Thankfully, there is only one week left.) It is now 10pm and both the boys are sound asleep, so it is too late for a reprieve. I forgot to have Tyler leave out cookies and milk for Santa! I even have special reindeer food for the lawn and I spaced that too! In my defense, I didn't "talk up" the cookies and milk tradition, so he doesn't know we skipped it... at least I am consistently forgetful! I am going to try to make it past January 2nd, before losing the nomination this year. :)

Santa...

Yesterday was a long day, but Bill handled it quite well. We had to get out of the house for awhile because the cleaning people came, so we went to breakfast with Joe and Ann. Then, in the evening, we had dinner at my aunt's house, which in hind sight, was probably too much. He did not manage to eat dinner, but he did stick it out as long as possible. He slept most of the day today, but at least I got him to eat a little dinner. Sometimes that alone, is a monumental accomplishment!

Tyler turned three just a few months ago and this Christmas should be even more fun with him "getting it". Every year gets better and better. To see the magic of Christmas through a child's eyes is the true meaning of the holiday. I can honestly say that I have whole-heartedly tried to use the, "If you are not a good boy, Santa will not come and bring you toys." I am still waiting for it to work. Yesterday he looked me in the eye and said, "I don't care and I don't want new toys, and I don't want him coming in my room." I think I am going to start telling him that Santa does go in your room if you are not a good boy... That should put the fear of God in him!

Christmas came early for our family this year. I have repeatedly posted about the incredible staff/team with whom I work, and how very fortunate I am to have them in my life. On Thursday they did yet another selfless act for our family. I went to Tyler's school to pick him up, which I never get to do because I am usually at work. (That story is an entirely different post.) While I was gone, my principal set up a tall Christmas tree in my room with gift cards pinned to it. Not just a few gift cards or even a handful, but an insane amount of them. I am still speechless and get teary every time I look at the beautiful tree. I do not know what we would do without such amazing, caring people in our lives. It doesn't just take a village to raise a child, but get through a crisis as well. So, thank you Golden staff, from the bottom of my heart!

Oh My!!

My favorite part of Christmas (aside from the real meaning, of course) is not the shopping or even the decorating, but the wrapping. I love beautiful paper, bows, ribbons, and the creativity that comes with putting everything together. It is not uncommon for me to shop for my wrapping paper far before the actual gifts. In fact, the only reason I get a lot of my Christmas shopping done early is because I love the look of coordinating gifts under the tree. My dream is to have a gift wrap room in our house with a closet set with rolls of paper suspended for easy access... As I type this I am now realizing that I should probably look into some sort of counseling.

I had an amazing experience at work today which was a direct result of the staff with whom I work. I want to post about it, but will need to do it tomorrow when I can gather my thoughts and write something slightly coherent. I am so touched by their generosity and am struggling to see the keyboard through the tears. Hopefully tomorrow I will be a little less emotional... doubtful, but a girl can dream.

Random Thoughts

Bill definitely can tell the difference when he is on a break from the harsh medication... which is only one week out of four. He doesn't feel the desire to constantly live in a slumber. Instead, though, he lies awake in bed unable to sleep and dwells in his own thoughts. I think I would rather sleep. Work is my escape - sleep is his.

After we got the incredible news on Monday, Bill was awfully quiet and obviously didn't want to discuss anything. The past few weeks we have had many conversations about a variety of topics. Things that people should not have to discuss until they are well into their eighties. Sometimes I catch myself thinking, "I am only 33, this is not supposed to happen." Then I think about Tyler being only 3 and my heart bleeds for him. In all honesty, we were both SHOCKED by the good news! I really think Bill had difficulty at first accepting the fact that the trial was working, and he would be forced to keep fighting. I knew he needed a day or two to absorb the news and clear his head, so I let him be. After today, I think he has come to terms with the fact that he must keep fighting, if not completely for himself, then for "the boy" as we affectionately call the small person with whom we live.

I know I regularly post about our humbling experiences, and how blessed we are to have such amazing family and friends. While our whole ordeal has never been a secret, there were parents in my class that I was sure did not know of our situation. Last week I wrote one of the hardest letters I have ever written to let them know what was happening. I know word of mouth sometimes takes care of it, but I felt the need to formally tell them why substitutes were often needed. I received an overwhelming rush of support, prayers, and love. When I returned to work on Tuesday (after Monday's appointment) I had a card on my desk from one of the families in my room. They made a monetary donation to the City of Hope Research Center in our name. I get weepy just thinking about it. The thoughtfulness and generosity of others continues to amaze me.

New Pictures!

I have wanted to post pictures on the blog since the beginning, however Bill was not privy to the idea and requested that I refrain. He was afraid the pictures would turn the blog into some kind of memorial... while I understand his angst, I tried to casually explain that it wasn't his picture I was particularly interested in posting... it was Tyler's. Well, it's been 5 months now since the start of the blog and I feel it's time to post some. I am officially rebelling. This is especially for the people reading that consistently pray for us, yet have never met or (in some cases) even seen us. I'll try to keep it in control, but here are a few to begin the journey.

Finally, Good News!

I know good news spreads quickly, but I'd like to officially announce that Bill is staying on the trial! Not only have the tumor and infected lymph nodes stopped growing, but they have slightly decreased in size. This is such huge news since this type of cancer doubles in size every 2-3 months. Here are some of the statistics...

Tumor in his groin:
Last Time = 8.3 x 5.9cm
This Time = 7.7 x 5.9cm (shrunk in length, but not width)

Infected Lymph Node #1:
Last Time = 1.8 x 1.2cm
This Time = 1.6 x 1.0cm

Infected Lymph Node #2:
Last Time = 2.1 x 1.3cm
This Time = 1.8 x 1.0cm

They were very pleased with the results, and Bill is on his way to another 2 cycles! He does have more fluid in his right lung and now there is quite a bit in his abdomen. He'll be having the stomach drained first, and then the lung for a third time. Thankfully, they gave him a prescription to *hopefully* increase his appetite. It is a synthetic marijuana, so it should do the trick. I am going to go stock up on munchies! ;) We are ecstatic, despite the fact that Bill is not feeling well. He didn't sleep at all last night, so he paid the price today. The battle today was won, and we are rejuvenated to win the war! Thank you all for your thoughts and prayers. God is always listening!!

Tomorrow...

Only about 12 hours until we find out if the treatment is working. Bill's lab appointment is at 7:20 and the doctor's appointment is at 8:40. They are not usually that spread out, so the hour wait will be a long one. I think Bill feels that the treatment is not working... but I have heard that is very common among the cancer crowd. Just to reiterate - we are hoping that the cancer/tumor does one of the following; 1) shrinks 2) stays the same or 3) if it grows, it only increases by 20%. If any of the three happen, then he can stay on the trial. If it grows over 20%, then he will have to stop treatment. My question is regarding the 20%. I can't help but wonder if it is a rate of 20% or a quantitative 20%?!? In other words - Is it a 20% increase based on the rate of growth, or is it that the tumor grows 20% of where it was the last scan. Those could be two totally different numbers. Now my OCD tendencies are shining through... This is a perfect example of why I have a job. I desperately need to occupy my mind with information that is useful, instead of driving myself crazy with cancer stats that I cannot control. (Control being the operative word.) I will definitely post the update tomorrow. Stay tuned!

Obsession Confession

We had a wonderful dinner last night to celebrate Aunt Judy's birthday. We had a surprise visit from Chad (Bill's cousin, Judy's son, Adam's brother) who was also able to join us for dinner. It was a fun evening... to quote Tyler, "It was the best birthday party ever!"

I have a confession, well, an obsession actually. An obsession confession... I am totally and completely addicted to the New York Times crossword puzzle. I have to do it every day, or at least attempt it. Thursday night I almost left the house at 8:00pm to go buy a paper. We don't have it delivered, but I usually buy it on my way home from work. I'll admit that I don't always finish it, but the "easy" days (Monday-Thursday) I come pretty close. I have also once or twice *wink, wink* looked up the port of Algeria on the Internet. I have a mental block on remembering that one. Adam and Bill thought I was kidding when I said at dinner that I had the puzzle in my purse. We got home and I could not wait to get back to it. I even do the puzzle in the car... riding, not driving. I got my hair done on Wednesday and instead of reading People or US Weekly, like I usually do, I sat and did my crossword puzzle. My hairdresser (whom I have known since 2nd grade) just laughed, and oddly, wasn't surprised. Now I need to go upstairs and get ready to go get my Saturday puzzle... wish me luck!

Still Waiting...

Is it Monday yet? We are still anxiously waiting for the results. It isn't coming soon enough. Bill's aunt and cousin (Judy and Adam, respectively) came down today to visit so hopefully Bill will be up a little more the next few days. It is always so great to see them! Bill and Adam will have the day to go play tomorrow - please pray they stay out of trouble. ;)

It takes courage to have hope... I got this message on my desk at work this morning with a special magnet that says "HOPE". It really got me thinking - in our situation, it is a battle that is fought in our home everyday. We often feel that hope is lost and it takes every ounce of strength to change the negative mindset and regain courage to fight this. Hope is so very valuable, whether you are full of it, or just grasping a thread, one cannot live without it. There wasn't a card or a name on the present, and it is the 2nd anonymous inspiration gift that was left on my desk at work. I have a suspicion of the secretive gift giver, but it is still a mystery... I think I like it that way. :) Thank you mystery gift giver, from the bottom of my heart!

The Week of Waiting

Bill had his scan this morning and it went well... as well as it could go, I suppose. He drank the barium last night (not a exactly a tasty treat) and then had another one for this morning. He drank part of the 2nd one before it came back up, but luckily, was able to get most of it down. Nothing eventful happened at the the scan, and the waiting is excruciating. We need to know the tumor's measurements in order to determine the next step. We are unsure whether treatment will stay with the trial, or if he will give chemo a try. We were told by the first oncologist that, "chemo won't work" so it is not encouraging to have that as our Plan B. I am actually content with the not knowing part of the week... Bill, on the other hand, is ready to know immediately.

I think almost every parent has a story similar to this one...
I can remember my cousin Katie (now 23) as a two-year-old saying to my aunt, "Kiss me like they do on Top Gun." (Yes, I realize that movie title is a blast from the past.) In case you need a translation, she wanted to be kissed with an open mouth. Tyler woke up on Sunday morning and said to me, "Mommy, kiss me
s-l-o-w-l-y on your mouth." I tried to explain to him that we are not that kind of family, but rationalinzing with a three-year-old is no easy task. ;)

Monday's Appointment

What a day... I really don't know where or how to begin. We went to breakfast this morning with Joe and Ann and it took every bit of energy Bill had. Honestly, it was way too much for him to sit the table. He was in obvious pain, yet he did his best to eat about half his breakfast. He hardly spoke, and I'm convinced it was an attempt to conserve energy in order to get through the meal. I could see the hurt in his eyes.

The humbling appointment on Monday was the perfect opportunity for Bill to ask the hard-core questions that he doesn't ask in order to protect me. Little does he know, I probably have the same questions and the same reasons for not asking them. I feel the need to beat around bush - I just can't come out and write it... some things still need to be kept private. Bill's questions had to do with life expectancy and the answers he heard were NOT what we were expecting. Although it is important and necessary information, it was shocking. I had read numerous articles online and thought I was prepared with the glum statistics, but hearing it from the doctor was heart wrenching, to say the least. That is all I can bring myself to report - sorry to bring on the pity party. Please know that is not my intention, but in this situation I feel like good news comes few and far between. I will try to finish the doctor visit "story", but it may take a few posts to get it all out.

Stay Tuned...

My Internet wasn't working right last night and I had a detailed post planned in my head. I will write it tonight, provided all connections cooperate. I just wanted to give a quick update.

We have to get out of the house for a few hours today because the cleaning people are coming. (thanks, Dad!) It is usually a hassle to have to leave on a Saturday morning, but today I am so grateful. It will get Bill up, dressed, and out in the world for a little while. He has been feeling really poorly lately - and I'm not sure if it is all due to physical pain. I have a strong feeling that a lot of the sleeping this week is to avoid the mental anguish. He actually ate last week for Thanksgiving and gained 3 pounds! This week (if he went to the doctor) would definitely be a loss. He gets his scan on Monday morning and then we go to the City of Hope for results on December 15th.

Christmas Lights!

It has been a long week and it's only Wednesday. I had the BEST surprise yesterday when I got home from work. Not only was Bill downstairs, but Bryan (our neighbor) helped my mom put our tree up AND put up Christmas lights on our house. He even did the second story! (He also cleaned the rained gutters since he was up there and he said they needed it.) Tyler and I spent the evening putting up Christmas decorations, and he kept saying, "This is the best Christmas Day ever!" Little does he know, it gets even better than decorating the tree!

The night before, Bryan and Nyra (same neighbors) brought over an amazing dinner and it included even better company. :) It is very humbling for us to have such wonderful people in our lives who come running at the drop of a hat. I have been in tears all week long... "appreciation" tears, that is.

Bill has come to the conclusion, that he will probably not be returning to work after the first of the year. That was his goal since it's a slight financial struggle to have him at 66% salary. Honestly, I am thrilled he has made this decision, but my goal is to have him stop stressing about money. Afterall, it IS replaceable. I have way too many things to worry about; money is now quite low on my list. I am so very relieved he has found the answer within himself about not returning to work, since life is far too short...

A Small Appreciation

Bill went to his appointment this morning all was well with the basic check up. He will be going on meds for his high blood pressure, which is common on one of his drugs. I'll use his words when he said, "The appointment was a humbling one." Although I am not ready to post its meaning, time will lead me to share. Family set aside... lately I feel badly for the people at my school that I constantly lean on. I vent to my team (4 amazing people who would do ANYTHING for me) and my principal (equally amazing). Most people can check the blog every so often and easily go about their lives somewhat unaffected by our trials. These people (and our families, of course) never get a break from me or our drama. They are truly living every day with us. They feel our pain and triumph in our successes. I know they go home and their positive thoughts are still sent toward us. They never cease to amaze me... I thank God everyday to be surrounded by such wonderful women. I am so very lucky!

To Sleep or Not to Sleep...

We finished up our wonderful weekend with a quiet afternoon at home. Since Bill was up for 5 days without naps, he has some catching up to do on his sleep. It is much harder for him to stay awake here, at home - for so many reasons. The first being that he is often alone during the day while I'm at work, and sleep helps the time move faster. The second is the constant cancer reminder that weighs heavily in our house. It's as if the word "cancer" is written on the walls. It would make anyone want to close their eyes. Being away is a magic eraser... I found myself forgetting that this disease plagued us. It is much harder to forget when we are the throes of every day life.

Tomorrow is another City of Hope appointment. Bill is going solo this time - it is a very easy appointment and he should be in and out quickly. Since he is on round 2 of the treatment, he only goes every other week. In about 2 weeks he will go for his PT scan and that will be THE appointment... the Results Show, per se. I am honestly dreading that episode...

Thanksgiving Weekend

I think this is the longest I have ever gone without posting. We are at the beach house until Sunday, and I just haven't had a chance to get on the computer. Actually, not because we have been so busy, but because it has been so relaxing. There is something to be said about being electronically UNconnected for a few days. Even for a junkie, like myself.

Thanksgiving was really nice with my family. Although we were a small group, it was reminiscent of the "old days" with just the originals... and Tyler, of course. Speaking of Tyler, I can't put into words how very thankful I am for that little guy. The depth of love that is felt for a child is really unfathomable. I am thankful for many, many things, and everyday feel so blessed. Maybe someday I will be thankful for walking through these hard times, but I am just not ready yet. Someday possibly, but not yet.

Hodge Podge

We are headed to the beach house in Carlsbad this weekend - actually Bill, his parents, and Kelsey left yesterday. I am so glad he went a little early to relax and have a change in scenery before the craziness of the holiday starts. Tyler and I will have Thanksgiving with my family and then head straight to Carlsbad after dinner. We had a nice night last night, but we definitely missed Dad!

My mom doesn't want our new blog published until after she's "gone". Actually, she doesn't want it written until then. I know I am speaking for Todd and myself when I say that my aunt and my mom WILL have editing rights... for the most part. ;) Its intention is purely for entertainment purposes! Let's just say that Todd did the first entry and it is titled, "I Wanted a Puppy..." You can guess to whom he is referring.

Where There is a Will, There is a Way...

Mental health (or lack of) plays a dominant role in a cancer patient's life. The mental fight is half the battle - it is amazing to see the strength of ties between the body and the mind. The past month has been challenging, to say the least. The ups and downs have been so widespread that I have forgotten how "middle ground" feels. The past week has been a huge improvement in our day-to-day lives. Bill has been taking his share of naps, but at least they have been naps and not an all day coma. He usually manages to leave the bedroom for half of the day, and we have even gone a few places lately. The choice he makes to force himself out of bed seems to be just that... a choice. Granted, it is not easy for him to get up and make it downstairs, but where there is a will, there is a way. At least I feel comforted that he CAN do it. It is left up to his mental state to determine if he wants to. Please don't misunderstand, I am not complaining or taking it personally, it is simply par for the course. Depression is a huge part of this ordeal... even the little magic anti-depressant pills can't fix everything for him... but they sure have done wonders for me! Tom Cruise can judge all he wants!

My brother and I are starting our own blog. We are not ready to open it to the public, but maybe sometime that day will come. Writing is something that comes easily for both of us, and we are combining our skills to possibly write a book. In other words, my parents raised one author, it just was spread between the two of us. The blog is about our (rather priviledged, yet hilarious) childhood... aren't they all? We are going to tell the same event from our younger years, just with two completely different perspectives. Of course mine is the accurate view and his will be so far fetched and skewed... :)

A Good Day!

We had a great day for many reasons. Our fence was not only fixed in the backyard, but completely replaced. (Background info: Part of the back fence fell down in the winds and it just wasn't in our budget to run out and have it fixed. Our backyard is on the bigger side so when we need to have anything fixed/replaced, it is always a pretty penny.) My dad, Joe, and Ron all pitched in and had it replaced for us. It is beautiful!!

Tyler has had some major "mommy" issues lately. He doesn't want me to leave the room without tagging along. At what age does he let me go to the restroom by myself? I leave for work at 6:30am, and I am convinced he sets his internal alarm clock just to torture me before my departure. This morning, my dad came over early (for the fence people) and occupied Tyler, so Bill and I could go out to breakfast... alone. Tyler chose to stay home with my dad and willingly kissed us good-bye. That hasn't happened in awhile. Joe and Ann came over too, as well as Bill's best friend, Mike, so we had a fun-filled morning. With the exception of a 3-hour nap, and an early bedtime, Bill was up most of the day AND even ate twice! All in all - a great day!

Hmmmm...

My update today is a confusing one. I am unsure if it is good news or bad news. I suppose if it is a question, then the answer is actually staring at me in the face.

The GOOD News - Bill got up today, took a shower, put in contacts, and left the house!! He called me as I was on my way home and was in his car driving around looking at the tremendous fire damage that surrounds our humble abode. He was gone 30 minutes - all by himself! Then after I came home, the 3 of us went to run some errands. Bill even provided his taxi skills, while I did all the legwork. It was really a treat having him go with us. Even Tyler said, "Thanks for coming with us, Dad. That was nice of you."

The BAD News - The reason Bill left the house today was because he just couldn't lie in bed any longer. He said he could feel the tumor in his groin and could not bear staying in bed "feeling it" anymore. It wasn't necessarily physical pain that ailed him today, but it was the mental anguish that weighed heavily on his mind. I pray with my entire being that he is wrong.

Hopefully he can muster up more energy for this weekend... energy that is not fueled by the fire... literally!

Oops!

I forgot something hugely important on yesterday's post about our appointment. Prepare yourself, because it is a BIG one... *enter drum roll here*

Bill gained 2 pounds in the last week!!

I am so excited I can hardly stand it! If only he could gain a few more and make it an even 10 pounds. Although it is not rocket science, but it goes to show you what eating will do. Last night started day one of the second cycle of the trial. So he is officially back on both medications. Today he slept all day, but did eat a decent dinner and hung out with us for a good 30 minutes. It doesn't sound like much, but trust me, to us it is everything. I treasure every single second that we spend together, and sick or not, I recommend everyone do the same with their loved ones. You never know what kind of curve ball will come your way.

Another Appointment...

The fire was a lot closer than we thought! It burned the center divider on the main street that leads into our neighborhood. It was crazy! I know I am now a hypochondriac, but I also am over analyzing Bill's symptoms. Since the fire, I think his breathing has gotten worse. I can see he is short of breath faster and he seems to be breathing louder when he sleeps. Again, it could very well be my imagination, but today was more severe. His voice is also extremely hoarse. I don't notice it much anymore, but we met a friend of Bill's today at the City of Hope (his son is getting chemo treatment) and he commented right away about his voice. I can't help but think the fire and smoky air have something to do with it. It was shocking when I called his cell phone a few weeks ago and got his voicemail. Hearing the difference in his voice is startling - it is so soft and labored now. I am debating packing up and staying at my mom's house for a few days to let the air settle a bit. It doesn't help that I have watched a few different news stories on air quality... or lack thereof.

Today's appointment was uneventful - although Bill asked questions about what if the trial doesn't work. Dr. Chow said then he will move to a standard chemo oral drug. I asked him afterwards why he asked that, fully knowing that something triggered the thought. He said he has had pain and been sore the past few days in his groin area (the mass is there). I pray it is the medication working its magic and the shrinking is making him sore?!?!? I know, I am fishing here, don't worry, I am not dillusional... usually.

The Fire!

We made it through the day - flames and all. At least this year we did not get evacuated (like last year). The Anaheim Hills fire was across the main street from our house. It was dark, smokey, and ashy all day. The apartment building that was featured on the news is about 1/2 a mile from our neighborhood. Joe, Ann, and Sharon came over today and we went to lunch. On the way home we saw the flames on both sides of the freeway, instead of just one. They ended up stranded at our house because all the freeways and most roads were either closed or bumper to bumper. We pretty much sat in front of the news and occasionally walked outside to see the aircraft show above our house. It was a crazy day!

The good news is that Bill was awake and up all day today. Not one nap! He even ate twice today, and they were legitimate meals. Sharon was able to create an amazing meal out of next to nothing. She found a few things in our kitchen and used her McGuyver skills to make us a delicious dinner. I wish I had that gift! We were all pretty excited that Bill was awake today, and I think he feels really good about it too. Hopefully the winds die down, and we will be in the clear soon.

Prayer - (warning: strong beliefs ahead)

I fully believe in the power of prayer. I don't need anything to be proved. I have a blind faith in my spirituality and don't have to see it to believe it. I also know that God hears every prayer, not just a select few. He hears them whether you are in church, your car, or wake up in the middle of the night, He always hears prayers. Whether he acts on every one is another story. It's incredibly hard for me to comprehend that some of the greatest gifts He gives are often of the prayers that go unanswered. Maybe someday I will understand, but right now, today, I cannot fathom the reason.

I have always been a big pray-er (if that is even a word, let alone a characteristic). I remember lying in my bed at night as a child having conversations with God. Ever since I was little I have always felt that one should never pray sporadically to just ask for something, in fact, I don't think praying for a "thing" is the right way to go about a prayer request. I can recall when I was getting my Masters degree and someone seriously praying, "Please, God, give me an A on this test." I couldn't help but think...

God doesn't give A's, teachers do. God doesn't get you a job offer, or win a football game, or get you into college. He gives you the skills and abilities to do all those things. Only I can earn an A on the test, God has already blessed me with the ability to succeed, at some point, prayer should not change the responsibility that lies on my shoulders. Prayer doesn't replace studying or being prepared....

I have prayed more in the last 3 months than I can remember. Every time I think about our situation, I say a quick prayer. Although redundant, sometimes I feel like the more I pray the better the odds are that it will be answered. Like He pulls a prayer out of a hat and I'm just hoping He pulls mine. Other times I feel like I can't keep praying the same thing and getting the same answer, so maybe it's time to change. My new prayer....

God, please grant us the strength to get through this and please let me never doubt your motives or your plan. Also, please give me an A on this test... haha, He knows that I am just kidding! ;)

Other Blogs

I am sitting here at the computer torturing myself by reading blogs of people who are suffering with melanoma. Actually, not just people, but children who have suffered from this disease. I was originally searching for some support on a blog of a "real person" to possibly help shed some light on our situation. Boy, was I wrong! I read so many amazing blogs with super-hero authors, but let's just say there wasn't any light shed, and my eyes may be swollen shut by morning.

Today was definitely a better day, although not stellar by any means. Bill did get up and stay downstairs for awhile during the day today, and he even hung out with us a little while after I got home from work. He said he didn't sleep as much today, but still didn't have energy to do anything except take a shower. He *kind of* has more color in his face today. I see him so often that I'm not sure if my eyes are playing tricks on me or not. I can tell he is thinner and losing more weight. He has lost 40-45 pounds in the past few months. We go back to the City of Hope on Monday, so hopefully we will get some answers also.

Quick Update

No luck in the "good" week department, yet. Bill spent the day sleeping and is completely wiped out again today. I am obviously not a doctor, but I can't help but think it is a combination of both drugs that makes him so tired. Before, when he got "better" after going off of the medication, he actually stopped both drugs, not just the one harsh pill. It was assumed that it was Tipifarnib that exhausted him. I am now thinking that both drugs have a combined hypnotic effect. The problem with that is he never goes off of the other drug (Sorafenib); it is taken every single day... if he has to take these drugs forever, then the regimen will need to be altered to allow him a life that is somewhat vertical. Remaining horizontal for the majority of a day doesn't bode well for participating in the human race... but again, I'm not a doctor, and you know what happens when you assume something.

The "Good" Week

Well, it's Tuesday (almost Wednesday) and we are still waiting for the "good" week to start. Last night was the first night without taking the harsh medication, so I figure tomorrow should *fingers crossed* be a little better. He left the bed today for all of about 30 minutes combined. Luckily he was able to sleep most of the day, so that at least makes it go by faster (for him). After being pregnant I thought I knew the feeling of true fatigue... not even close, compared to what he is going through. Watching him sit downstairs for even 5 minutes just looks like it is excruciating. Not to mention then having a 3-year-old want to play and rough house; it is so hard for Bill. I remember when Tyler was born and all Bill wanted to do was rough house with the baby. I used to get so nervous, cringe, and tell him, "He's an infant, you can't do that until he can at least hold up his head." Oh my, how the tables have turned.

Although Bill didn't make it to the movies, Tyler and I saw Madagascar and both of us give it 2 thumbs up! He loved it! We went to Target and I bought some Capri Sun (among other things) for Tyler. I always noticed he didn't say "Capri" correctly, but I never really figured out what he was saying. When your child announces loudly in the store, "Yay, Mommy, thank you for buying me CRAPPY Sun!" you start paying close attention to the phonetics and syllable emphasis of certain words. Maybe he is onto something and I should just buy bottled water. The insight of a 3-year-old...

At Hope Today

It was a very easy appointment today, for which I am quite thankful. We took Tyler with us and he was so easy, except right when the doctor came in he announced repeatedly, "I want to go home now, please." Bill and I couldn't help but agree with him. Four pounds were lost last week... No surprise, I had a feeling that was coming.

City of Hope takes pride in treating the whole person. In every room they have a framed version of "Why treat the body if the mind is still broken?" Their claim to fame is all of the extras they (supposedly) offer patients. We asked about seeing a nutritionist and the response was the same as when we asked to see a counselor, "You have an HMO, so it won't be approved." You have to be a "cash" patient or on medicare to get the services they promote. The bottom line, you have to be very rich or very poor to get anything other than medication. The middle of the road patient is simply out of luck. The sad part is, nothing surprises me anymore.

I debated writing about this on the blog, but here it goes. We found out today that there is a situation that could possibly force the doctor to exit Bill from the trial. He has a random (rather frequent) diarrhea problem. I watched the doctor and nurse "stage" this problem on a chart and since he was a stage II, it was acceptable. If it gets any worse, then he could be disqualified and removed from the medication. The doctor told him to take Imodium regularly to see if that will help... Bill's comment was, "It's really a crap shoot." I was the only one in the room that got it. ;)

I am so looking forward to this week being the "good" week. Last night was the last pill, so hopefully tomorrow he will start to feel a little less tired. I am going to try to drag him to see a movie tomorrow - whether he wants to or not. Every weekend should be a 4-day weekend! Happy Veteran's Day!

**Response to my brother's comment on the last post about giving a 3rd grader a Starbucks coffee.**
1. They make decaf and kids now-a-days love coffee drinks. ("now-a-days"?? I have turned into my mother.)
2. They also have non-coffee drinks - ex: fruit smoothies, sorbet slushies, etc.
3. I could get him full caffeine first thing in the morning and play a little joke on his teacher... haha just kidding, Terri!

Go USC!

Teachers have favorites - there, I said it, some may deny it, but it is true. That doesn't mean we don't like or want to help other kids, but it's human nature to have a select few that you absolutely can't forget. Well, I have been fortunate to have quite a few of those over the years and last year was no exception. At my school, it's easy to have a few in each class. This is my second year teaching second grade, so it is the first year I have ever had past students stay at my school... after 6th grade they leave for middle school. Sounds confusing, but I promise, it's not. Let's just say that I would adopt Ethan should his parents ever want to give him up. If he showed up on my doorstep with his bags, I would let him in and never look back. In fact, he is in the class right next door to mine and it mortifies me to think of him moving across the campus next year for fourth grade. (But his mom is probably already crying, so I need to apologize for putting that thought in her head.) I love this kid and want the formula to clone him. LONG story short... Ethan and I bet on the USC/Cal game. I just realized how that sounds that I "bet" a student, but he is a former one, so I'm pretty sure that it is allowed. :) We bet a Starbucks drink, and I know he's good for it. While I usually watch parts of the SC game, today I will fully admit that I watched to see if I won or lost our bet... and I won!! We have a four-day weekend, so I have to wait until Wednesday to brag about the Trojans!

Bill is feeling really tired and doesn't have any energy, but he's not sleeping all day, not for lack of trying, but he just can't fall asleep. It's almost worse to feel so crummy and not be able to sleep when all you want to do is lie down. It was a long day since I wasn't feeling well either, yet Tyler felt just fine and has the energy of a 3-year-old, so I took a lot of Tylenol Sinus today. We go back to the City of Hope on Monday, but I'd bet a Starbucks coffee that it is uneventful. He stops the strong medicine on Monday, so tomorrow night is the last one, and then he has a week-long break. I am still force feeding him, but he would probably use the word "bullying" to describe it... at least he ate today!

Cancer Cures

I know the term "cancer cures" seems like an oxymoron when dealing with a disease such as this, but I am convinced of its truth. It cures pettiness and puts life into perspective. It cures the worry of the small things in life and cures the ability to hold grudges. It cures fighting every battle and enables you to pick only those important. It cures an endless amount of life's small problems. The difficult part is that those minuscule problems are replaced by something bigger than one can imagine.

Cancer also cures some physical things as well... it cures the ability to remember to take the trash cans out, and cures the thought of putting the clothes from the washer and into the dryer in a timely manner. It also cures the desire to fold the blankets left over from a tent made by a 3-year-old. It cures the idea that dirty dishes cannot sit in the sink.

Bill is definitely feeling the effects of the medication. He actually had a craving today, so I ran to Cheesecake Factory after work to get his requested salad. Eating (or lack thereof) has again become an issue. I am very much looking forward to next week when he is off the harsh medication. It is heart wrenching to watch him sleep 22 (or more) hours per day. He is right upstairs, yet we so desperately miss having him around. I know it's the medication causing it, but after having the day I did, it would be nice to vent to him while he's actually awake. Although it probably benefits him to sleep through the teacher trials currently festering; he should consider himself pretty lucky in that aspect. Thankfully, tomorrow is a new day, and it can only get better.

Tipifarnib

The medication is definitely cumulative. The fatigue has reared its ugly head. He did manage to take Tyler to school today, then came home and slept... fast forward to dinner - he ate (good news), then went back to bed - a lot of sleeping today. It is obvious that the color in his face is different, and it seems like the meds are taking their toll. Bill was also complaining today of an ear infection/sore throat combo, which I am sure isn't helping his cause. I am not nearly as worried this time around, since I feel in my heart it is the treatment that is causing the tiredness. This is week 3 of the medication and the 4th week he goes off the harsh pill. It wasn't until he went off the medication that he started to feel better and got a little color in his cheeks, so Murphey's Law prevails... The medication makes him sick, and he gets better when he stops taking it - so putting 2 and 2 together, he should feel like a million bucks next week when he goes off the harsh drug. One can dream...

You are all too funny about me becoming a writer. (See comments on last post.) There are nights I really feel like I throw a post together and should go back and edit, but sleep always sounds more appealing. Bill teases me because when people call or e-mail him the first thing mentioned (after "How are you?") is about the writing on the blog. He wants me to write a book so we could benefit financially, and he can be a stay-at-home dad, only with a nanny to babysit. I had to explain what the term meant, and he quickly rethought his plan. ;) I probably would never have a blog if we weren't in our current situation, so I guess he deserves half of the royalties, given that he has provided me the subject on which to write. I truly love writing the posts and it serves its therapeutic purpose. Who knows, maybe you are reading the advanced copy of a future publication... Thank you all for the kind words.

City of Hope Today

Hind sight is definitely 20/20. We were barely there an hour today. I didn't go to last week's appointment (after the week-long snooze-fest) when I really should have, and of course I went today and the appointment went like this:

Dr. Chow: Wow, you look so much better! Is the reduced amount working better for you?

Bill: Yes, I feel so much better and I'm not sleeping as much.

Jackie: He takes a nap in the afternoon and that's about it.

Dr. Chow: That's great! Do you have any questions?

Bill: No, I think we're all set.

Dr. Chow: OK, see you next time.

Bill only lost 1 pound last week... although he had significantly heavier clothes/shoes on this time. It is my OCD that needs the weigh-in to be controlled. I was tempted to go home and weigh both sets of clothes to figure out the correct amount, but that is just my freakishness seeking an exact science. He has been eating at least twice a day. I made pumpkin bread yesterday to give him some other options. I know, I know, I don't ever cook, but I CAN bake... it goes with the exact science thing. **Disclaimer: I am well aware of my anal obsessiveness - you need not worry. We are saving for Tyler's therapy. :)**

The Weekend

We had a MUCH better weekend, since Bill was able to join us on a few outings. The medication they reduced (tipifarnib) is the culprit of the extreme fatigue. He is taking 1 of those a day, instead of 2. I assume that drug is similar to chemo in the fact that it is cumulative and builds. So Saturday, he napped a few hours, and today he was slightly more tired than yesterday... but nothing like it was last weekend. I honestly can't explain how severe it was last weekend. I am so grateful that we discovered it was the drug that caused the fatigue instead of the disease. I felt like he was here, yet I missed him. Quite a surreal experience.

We go back to the City of Hope tomorrow and I will be in attendance this time. I learned my lesson when Bill got home last week and not one word was written down. That is difficult for a copious note taker, such as myself. I guess the only way to get ALL the info is to hear it for myself. Hopefully, it will be as fast as it was last week, since I only took a 1/2 day sub. As we say each day in our house... Happy Tipifarnib Day!

The Shark and his Dad

Well, Halloween went off without a hitch and our little shark swam the street getting candy. He completely got the idea of Halloween this year... it was so fun to watch! I can't wait until Christmas, that should be even better.

The lung draining went really well and they drained 5 times the amount they did last time (750 cc's) which is equivalent to a little less than a liter. They only drained the right one, since the left one had very little. It was not as painful this time because instead of using a needle syringe, they used a catheter. Bill also admitted that his looming fear of the procedure is gone.

I can't explain in words the difference in him. He was sleeping so much, that I was beyond nervous. Today, he didn't even take a nap, versus sleeping 22 hours a day. He actually has color in his face, and energy to not only come downstairs, but be a member of society. The pills must be doing their magic... I don't want to jinx anything, but it seems promising. He called the City of Hope Thursday to see about a new dosage, and they gave him a reduced amount, with one stipulation - he can't start until he eats 2 meals a day. He asked if he could start immediately if he went and ate dinner and she said he could. He went back on the new dose last night. Finally, someone at Hope is concerned about the weight loss!! I'll keep you posted...

Miracles

I am a firm believer in miracles - although beliefs waver when you are in desperate need. It's quite easy to believe in miracles when you aren't fervently praying for one. That being said, an interesting turn of events has bestowed itself on us. Bill was on the treatment medication for 8 days; he has been off of it for 2 1/2 days. Today he seemed better than even before he started taking the pills. He had increased energy, went to the eye doctor, and hung out with friends who came over to bring us dinner. Over the past 6 weeks he has had serious issues with his stomach being extended because of the fluid. He has even been itchy because of his skin stretching. I noticed, and he commented, that his stomach is smaller and he is much more comfortable. Am I imagining things?? Could it be possible that the medication started to work and is giving him this reprieve? He claims it is because of the 9 pound weight loss, but I can't help but think the pills had something to do with it. Stay positive and keep the prayers coming!!

New Perspective

I was given a whole new perspective today. I went in and talked to Tamie (my principal) and she shed a new light on the "cease fire" medication issue. Let's just say, I did not keep my unhappiness about lowering the dose a secret. In reality, this medication needs to be something he can live with... not sleep through, and actually function on a day to day basis. Knowing this disease isn't ever going away, these pills may forever be a fact of life. If lowering the dose means he can partake in life's events, then I vote for that one!

Today was a HUGE difference in his energy level. He showered, put in contacts, went to the store with us, and even drove there! He did more today than in the last 8 days combined. Friday is not only Halloween, but official Lung Draining Day! His appointment is at 9:30am... which for a teacher, is equivalent to substitute suicide. Thankfully, Joe (Bill's dad) is able to take him. I did get the guilt trip about how I will be "partying" with 2nd graders while he has a needle stuck into his back. I gently reminded him that I too, have had a needle stuck in my back... while I was birthing his son, in labor for 36 hours, pushing for 3 hours, only to have an emergency c-section... but I'm not complaining. ;)

New News

Interesting happenings at the doctor today. I stayed and worked, but our neighbor, Bryan sacrificed his sleep and drove Bill at the crack of dawn. I sent Bill with a list of questions, but I forgot about the "male factor" involved with men relaying information. It was pulling teeth to get the basics out if him. I will not be skipping any more easy appointments in order to keep communication and eliminate the middle man... no pun intended.

Thankfully, Bill did accurately portray the severity of the fatigue. My estimated guess is that he was sleeping 20-22 hours a day. The doctor took him off the treatment medications... yes, you read that correctly, OFF the meds until Thursday. The only way they can determine if the pills are causing the fatigue is to compare life without them. If it is the treatment, then the dose will be decreased. My thoughts --- **Who cares if he is sleeping most of the day, does that matter for treatment? If a patient has a rough time on chemo, you rarely hear of a doctor halting treatment because of some regular side effects. It's par for the course, stick with the drugs!** I am struggling to accept the fact the he is stopping for a few days. He seems fine with it, so I guess I should let it go, but it just doesn't sit well with me. The other news at the appointment was that he has lost 9 pounds in the last week!! Again, not a typo, NINE POUNDS!! I have done everything except chew his food to try to get him to eat something, to no avail. Wish me luck!

End of the Weekend

I appreciate the influx of phone calls and e-mails inquiring about my mental state, but rest assured, today was a better day. In fact, my "bad days" are generally not days, but moments. It's hard to have a bad day when you have a 3-year-old smile at you and say, "I love you, Mommy."

Bill spent the day sleeping and has an appointment bright and early tomorrow morning. He goes for blood work first, then the doctor's appointment immediately after. It is supposed to be a run of the mill appointment just to make sure the medications aren't giving him unbearable side effects and discuss pain management. He has been in pain lately, but the trick is staying on top of the medication, which seems to be working.

I'll admit that I am not a huge recliner fan (for decor), but I am so thankful we got one for our bedroom. When he struggles getting comfortable in bed, it is nice to have a place where he can sit upright and breathe easier, while staying in our room. So, my matching decorative leather non-reclining chair will retire to the spare bedroom for now... obviously, that is the least of my worries.

Too Young

Honestly, this week has been hard for me. I know in my head that Bill will need to get sicker before he gets better, but watching it happen is another story. I still pray that the medication is working and his body needs this rest to heal. I feel like I have aged 10 years in the past 3 months. I don't mean physically (but probably that too), but mentally. I am 33 years old (Bill is 41) and truly believe we are BOTH too young for this to be happening to us, to our marriage, and to Tyler. This crisis is something you aren't supposed to go through until your nineties, not thirties. I know I am feeling sorry for myself, but I feel I am entitled every so often. This is just not fair! I know life isn't fair... I have said to many a sixth-grader, "Whoever told you life was fair, didn't tell you the truth." I have been extremely "lucky" my entire life... that combined with hard work and a little skill, things have come very easy for me. I have always had the motivation and desire to obtain my goals and dreams in the exact time frame I set for myself. I can't help but think that this "test" we are being forced to endure is "payback" (so to speak) for always getting what I want, when I want it. I don't want Bill to have to deal with this, and it pains me that I can't fix it. I'd give anything for a magic wand... maybe I'll ask Santa for one this year.

Public Service Announcement

We are finishing Day 3 of the pills and to say he is sleeping like a baby is an understatement. (Which, after having a baby, that statement has a very different meaning to me.) In the past few days 3 major things have NOT happened... He hasn't watched 1 minute of TV, he hasn't put his contacts in, and he hasn't read the blog since starting treatment. He has pretty much slept for 3 days straight. I am not complaining, in fact, it's better to sleep the day away and let the medications work their magic. I think everyone can attest to the fact that sleep is the greatest escape. He left the house once, yesterday, and that was only because he had to in order to sign papers at our attorney's house.

That leads me to the Public Service Announcement - while it's not a comfortable subject, I would be willing to become the poster child for this topic. If you don't have a will written or a living trust for your assets, please (take my word for it), do not wait for a crisis to have it done. When I was pregnant with Tyler, our financial planner told us to go have it done, and we talked about doing it. Well, life happens, and we were in the middle of buying our house and I was pregnant with Tyler. Needless to say, we skirted the issue. Now we have had to set up our trust and wills in the midst of a disaster. Take Nike's advice and JUST DO IT! You will be forced to answer some of the hardest questions you could ever imagine, but once it is done, a weight is lifted. I will step off my soapbox now, and I will save the life insurance speech for another post... again, JUST DO IT!

Day 1 of Treatment

While the pills are more convenient, this treatment is definitely not a walk in the park. Bill spent the wee morning hours (1am - 4am) very sick. He selflessly went downstairs, so I never even knew he was sick. The coughing has been really prominent lately and the second he lies down it comes on full force. He is going to have to sleep propped up, so I will venture out to buy a recliner for our bedroom tomorrow after work.

Bill spent most of the day in bed sleeping. The pills have brought on fatigue to the nth degree. I can't help but pray that it means they are at work on the intruders. He is forced to eat with one of the medications, which is actually a godsend since he would choose to skip food altogether. I hope his body "adapts" to the forces of the medicine so he won't be sick everyday. He takes one of the pills three times a day (each day), and the other one twice a day (for 3 of the 4 weeks), so there is not a break period, or a "good" week, so to speak. Hopefully they all become good weeks!

Today's Happenings

What a day we had! We were prepared to be there from sun up until sun down, but luckily we were gone by noon. I am thrilled to report that things actually went as planned today (if not better), and the City of Hope followed through on everything they promised, without cancellation.

He is on the leg with pills only, so that alone saves loads of driving time and gas money. He will have to go back weekly for the first month, bi-weekly the second, and only once during the third and consecutive months. He took his first dose tonight, so time will tell how the drugs make him feel.

We got the CT scan results today from his test last week. The mass in his groin has grown (we knew that) and the fluid in his lungs and stomach has increased (also not a shock). The surprise of the day (besides things going as planned) was that he has new lymph node growths in his chest and abdomen area. They are still smaller than half an inch, but the doctor said she was over 50% sure they were cancerous. The good part is that it doesn't really matter... the treatment and diagnosis hasn't changed. Once it has spread, it becomes systemic and they will treat the entire body, regardless of the cancer's location. We were taken aback by this news that things have spread so rapidly. It has been about 10 weeks since the diagnosis, so I guess we shouldn't be so surprised by this. On one hand I feel like we just found out yesterday, and on the other hand time has crawled and it seems like an eternity has passed. I will post soon how the drugs are treating us... um, I mean him. :)

Tomorrow!

We had a wonderful weekend with Bill's aunt and cousin in town. We miss them already!

Finally, we are less than a day away from starting treatment. We have to be at the City of Hope at 7:10 in the morning, and the nurse said we could be there until 6 in the evening, depending on the leg of the trial he is assigned. Little does she know that we are not leaving until he gets treatment, so if that means we camp for a few days, so be it.

Tyler is spending the night with my mom and Ron tonight, so we can leave at the crack of dawn without my mom having to be here at 6am. We just got home from dropping him off, and I am a little lost. I honestly don't know what to do with myself. I think it has been 3 years since I have been home without Tyler here. No matter how hard I try, Bill just won't let me cut his food or give him a bath with Shrek bubbles. Oh well, there's always tomorrow!

The Weekend

Aunt Judy and Adam made it here safely and it has been refreshing to see them. To see Bill's spirits lifted is worth a million dollars. We went to dinner tonight and the first thing out of Bill's mouth when we got in the car was, "I love my aunt!" I am just thrilled to see him so excited about something... OK, he is pretty excited about Adam being here too. They are currently in the backyard finishing off a few beers. Bill hasn't had any alcohol in a long time, so this should be interesting. It has been so healthy for him to talk to Adam about all of this since he is a cancer survivor himself. You just never know what life will bring. I know if He brings to it, He'll bring you through it... but sometimes it's easy to forget. I work hard each and everyday to remember that it is all a part of His big plan.

We will be off to the City of Hope at the crack of dawn Monday morning. They said (depending on the leg he is assigned) we could be there until 6 pm. The past week has been very painful... I mean that literally. Bill said he can feel the tumor in his groin quite a bit and his hips hurt when he lies down, making it difficult for him to get comfortable. The fluid in his stomach is also expanding things and makes eating (and keeping things down) quite difficult. Now that he has fluid in both lungs, his breathing is pretty laborious also making movement of any kind a struggle. I keep telling him to take the pain meds, but he tries to resist taking them to avoid the drowsiness. It's all about the quality of life... I say, take the meds!! I never thought I'd be such a drug pusher. Go figure!

Doctor's Appoinment

Not Bill's appointment this time, mine. I went for a yearly physical/blood work yesterday since I was a few months overdue. I am now a hypochondriac (self diagnosed) with all of the things going on in our lives. Every little ache or bruise or freckle convinces me that I have cancer. My doctor is doing blood work to check my cholesterol and the run of the mill tests... I have her checking a million other things because of my Type A/Obsessive Compulsive disorder (also self diagnosed). Luckily, she just smiled, nodded, and agreed to complete the tests.

Funny story - Tyler came home from school yesterday with some artwork he colored. The teacher had cut a photo of him so it was just a headshot. His shoulders are cut-off, and you can see his neck, but you can't see his shirt. He described the picture as, "That is when I was at school and... (he studied the picture) I think I was naked." What are they doing at that school? Just kidding - it goes to show you that you can only believe about half of what they say really happens at school.

Good News X 3

Finally! I feel like we are long overdue for something to go as planned. The nurse at City of Hope called today and insurance has approved the trial! I don't know if the doctors on our end had to do any fighting, but thankfully we were not in that loop if they did. It is extremely common for insurance companies to instantly deny a clinical trial. Maybe if it's coming from the City of Hope they give it a second glance... it should be pretty obvious it is a scientific study that is not based on peach pits, although I am not above making a peach pit smoothie.

The second batch of good news is... TREATMENT STARTS ON MONDAY!! I have never been so excited to visit Duarte, California!

Good news #3 - Aunt Judy (Bill's aunt, Joe's sister) is coming down from northern California on Friday. She and Adam (Judy's son, Bill's cousin) will be here a few days, and it is just the motivation he needs to get him through until Monday. Bill is already planning the menu, which says a lot from a guy who hardly eats. Now I am praying that I can get through making a dinner for others. For those of you who don't know, "Mommy is not a cooker," to quote my (very honest) 3-year-old. Bill may have to get back on that horse...

New Test Results

I love the comments on the last post! If you haven't read them, they are a "must read"!

Bill had his blood work and CT scan done on Monday and the nurse called to check in with him. The update:

He has all necessary tests complete and the only thing we are waiting for is the approval from our insurance. As of Thursday, they requested more paperwork, so at least they are considering it.

The test showed he has fluid in both lungs now, not just one. There is also fluid in his stomach, which probably explains a lot of the pain in his abdomen. The mass in his groin has grown a centimeter each way - so now it is about 5 centimeters by 8 centimeters, which he can really feel now, especially lying down. His brain, liver, and kidneys were all found to be clear! When Bill was talking to her he felt like she was leaving something out. She was reluctant to give any info, but ended up saying those few things. We are praying all ducks are in a row, and he will start treatment on Thursday. (Provided the insurance approves.) Please keep the prayers coming!

Preschool

As a teacher I am used to being held in a very high esteem; a very common feeling among most educators. It is kind of like being a local rock star... I can walk into a third grade class and instantly feel like Ringo Star with all of the attention. Kids unconditionally love their teachers - especially in second grade. One year, I even had one of my 6th grade parents ask me to tell their child to clean her room at home since she'll listen to me. That was a little over the top, but children instantly form an early respect for the "other" adult in their lives. Having a preschooler, I expected the "mommy pedestal" to last indefinitely (in a perfect world), and I intended to bank on the teacher respect once the mommy plan ran out. I thought I had the best of both worlds.

Today I had a "teacher knows best" experience. While he's only 3, Tyler corrected me, when I covered my mouth with my hand to cough. *I will shorten his teacher's name to Mrs. N to protect the innocent:)* Tyler told me, "Mommy, Mrs. N says we cough into our elbow." Anything Mrs. N says is of biblical equivalence in our house. Don't misunderstand, I am thrilled he loves school, which at this age means he adores his teachers, which is all I really want. I couldn't ask for a better preschool environment. Thank you Mrs. N for being a preschool teacher. It takes a special breed, and I will be the first to admit that I could not do that job. Most of all, thank you Mrs. N for loving a whole slew of 3-year-olds.

Comments

*Disclaimer: Lately things have been so serious and philosophical. I promise to be a little more lighthearted next time! As I stated in the beginning, this is my therapy. :)*

I got my sorority quarterly magazine today and read something very interesting. One of the newly appointed vice presidents (a volunteer position) is a doctor doing research on gene therapy for the treatment of melanoma. She had so much success with the treatment on mice, it is now a clinical trial in Tampa, Florida. Who is ready for a road trip??

I learn (and gain) so very much from your comments. They get me through the bad days, and always enhance the good ones. It is comforting that I still feel like a "lucky" person even in the midst of a crisis. I have come to a realization... In my head I have always believed that everything happens for a reason, and it is all part of God's plan. Just accept life as it happens because God will take care of you. It was very easy to think this way when my plan ran parallel to His. When put in dire need of a miracle, my head still understood the mantra, but my heart was having doubts. I have turned a corner and truly feel that it is up to Him to take care of us. What is in His plan is the only plan, and I can't do anything to change it. We are along for the ride! It is so tempting to ask God, "Why me?" when really I think I should be asking, "Why not me?"

Strength?

The question I get most frequently is, "How do you do it?" The best answer to that is... I don't know. I wish I had a magic secret that allowed me to be super woman without stumbling on my face, but I am finding there is no such thing. I don't know HOW I do it, but I do know that I don't have a choice. Not to steal Nike's slogan, but you "just do it." There isn't time to think about life when you have 500 things going on, maybe that is the secret to not falling apart every minute of every day. Sometimes I feel like my strength is all an illusion. If I appear to have it together, then maybe things will fall into place. I find if you force yourself to smile and pretend to be happy then it actually becomes true, and you are what you portray. I suppose that could be good or bad... I *think* I am a happy person by nature, so being miserable all the time and feeling sorry for myself just isn't who I am or who I want to be.

When we were at the City of Hope last Thursday I saw a mother pushing her son in a stroller. He was around 4 or 5 and in a normal circumstance, too big for the stroller he was in. He didn't have any hair from chemo, he had bruises on his legs, he was thin, and he was missing an arm. I looked at that mother and thought, "Now THAT is strength." You do what is necessary for your family at any given moment... thankfully, adding a little faith, hope, love, and prayer to the equation makes life easier when you put it in His hands.

A Few Answers

Please don't hesitate to ask questions! I have had a few e-mails and questions in the comments and don't at all mind answering them. In fact, it has all become so clinical to me now, I have no problem talking about the cancer part of all this. It seems odd, but I can actually discuss it as if it is not happening to Bill. If you ask me about the emotional end of it... nevermind, I am a mess! Sometimes the two paths get intertwined, but you'll notice I avoid emotional questions if I am not ready to talk about certain things. I know myself, and once I start crying, it's hard for me to stop. There is no such thing as "just tearing up" in my world.

Question: What happened to the new drug they were adding to the trial?

Answer: There was never really a "new" drug, as we thought, it was the wording/format of the trial that was incorrect and had to be reapproved by the state and the ethics board at the City of Hope.

Question: How long will he be in treatment?

Answer: Right now, if it works, he will need to maintain treatment for the rest of his life. Since it is not curable, he will need to continue treatment in order to stop the cancer from growing. Stopping treatment is giving the cancer permission to multiply.

Question: When will they be able to tell if it is working?

Answer: They do new tests every 2 cycles which is every 2 months. The doctor did say that these are not "fast acting" drugs, but will be able to tell if growth has stopped after the 2 cycles. If the mass doesn't stop growing, then they stop treatment and I suppose we would start the back-up plan, which is chemo.

I think I covered everything - please let me know there are more questions. My brain is mush these days.

Today at HOPE

Our day was an eventful one! We got to the City of Hope (early) and waited a little while before getting in to see the doctor. The nurse apologized profusely for the receptionist's mistake yesterday. We met with the nurse, the PA, and the oncologist. It was a great appointment, and we got a much better feeling about the doctor. The first time he was a little distant and quite frankly, a little arrogant. I told Bill that I didn't care about his personality as long as he was a genius in fighting cancer. Today he seemed like a different person. We were talking openly and honestly with a few laughs in between. He explained the trial again, and we asked some questions. Bill asked the hard hitting ones, and prefaced them with, "I don't know if my wife wants to hear these answers." What Bill didn't realize is I probably have the same questions he does, I just don't know if WE are ready for the answers. I lie awake at night thinking many of the same things he does, but certain fears are very difficult to verbalize. I am debating with myself how much I should disclose on here, but there are really no secrets, and I want everyone to have a clear picture. *A clear picture of the unknown... the irony.*

Here it goes:
The trial doesn't have any results yet, so there isn't much info on odds or chances. It is taking place all over the country, however it originated at the City of Hope. They do know that he has a 10-15% chance of the drugs working. Regular chemo gives about 5% chance. For the record - we plan to be in the 10-15%! If it does work then the intention is to prolong life since the drugs on this trial don't kill the cancer cells (like chemo), they fight it in a different manner. Our hope is to have it stop growing and shrink - that would be considered a success. If it doesn't work, he will return to his original oncologist to try chemo. That is the backup plan. The million dollar hard core question of the day, "What could I expect (physically) if it doesn't work?" The answer shook me a little bit, because the doctor said one word. PAIN. Although they have drugs to help combat the pain and there is no reason to have to hurt, I still was taken aback by the answer. We know that he will have this for the rest of his life, our prayer is that it is in a manageable state. They put in the referrals for tests that will probably take place early next week. There is a slight possibility that he could start treatment next Thursday if all the stars align, but we know all too well how that goes. So really, we are hoping to begin treatment no longer than two weeks from today. We had a great day together and went to lunch after the appointment. I can't tell you how much I cherish the "good" days. Please keep praying!

A Quick Update

We are off to the City of Hope today! We got a call this morning aoround 7:45 and it was the receptionist who called and left a very curt message about the appointment being cancelled. She called to apologize for her mistake and tell him he still had the appointment and they had the referral. All I can say is I'm glad Bill answered the phone and not me... More to come later!

Unbelievable!

The appointment was cancelled - I can't even believe I am explaining this for the umpteenth time. Needless to say, we are deeply disappointed. City of Hope called at 4:00 to say they hadn't received the referral from our insurance company. After numerous (quite angry) phone calls, we may still get to go tomorrow. If the referral is faxed tonight or early in the morning, we can keep the appointment. It is up to Bill's general practitioner to get the referral in, and he says his end is complete and it is in. To be honest, I have no doubts Dr. Staz did everything in his power to get the paperwork done. After dealing with the City of Hope, I have a feeling something was mixed up on their end. I can't help but wonder, will anything go as planned?

I had a very humbling experience today and tears well up in my eyes as I begin to type this. After I got to work this morning my team came in with a gift basket that they put together with donations from the staff at my school. It was full of gift cards to restaurants, fast food places, and gas cards. I don't mean a few cards, I mean way, way over a dozen that total hundreds and hundreds of dollars (and even a gift for Tyler)! I kick myself that I didn't take a picture of the gorgeously wrapped basket. I cried when they gave it to me, after they left my room and throughout the day when I looked at it. Bill was obviously stunned and also humbled by the amazing generosity. The basket was a huge morale boost for both of us, not to mention a financial relief as well. When my mom called this evening I told her about the appointment being cancelled, and then shared my basket story and couldn't get the words out because I started sobbing (then she followed suit). Bill wanted to know if I was crying over the basket or the appointment... it is absolutely heart wrenching to have the appointment cancelled, but when other people care so deeply and do selfless acts time and time again, I just don't know how to express my deepest gratitude. Especially when "thank you" just doesn't seem sufficient for the support I have at work. I thank God everyday for the wonderful people at my school; words cannot describe how blessed I am.

Finally!

I feel like we are long overdue for some good news. Well, we are headed to City of Hope Thursday to sign papers. I don't believe he'll get any tests done, but any progress, at this point, is a step in the right direction. His appointment is at 10:40, so traffic shouldn't be too bad. (I would walk there if it came down to it.) Bill's general practitioner (Dr. Staz) called again today to apologize for all of the delays. He feels terrible and is actually checking into a second referral to UCLA since the City of Hope is not exactly jumping at the bit for him to start treatment. Although we are avid USC fans, I would do cartwheels to get him into UCLA (an amazing medical research center), and get this show on the road!! I might even consider buying a UCLA sweatshirt... well, maybe not yet, I don't want to get ahead of myself. ;)

The Unknown

The frustration level has officially reached its peak. It is at a level of which I never thought possible. Bill called the City of Hope today and spoke to the nurse. I don't think he kept his anger a secret when he spoke to her inquiring a real answer regarding the start of treatment. She finally admitted that the mistake in the write-up of the trial would have to be state approved, only to then be seen by the hospital's ethics board. He asked for a straight answer about treatment starting this week or possibly next week, and she stated that she was unsure when it would begin. UGH! We are debating seeking treatment with the first oncologist (in Irvine) just to get started on something, as long as it doesn't lessen his chances to participate in the trial. The waiting game is torturous!!

Our Weekend

There is something about ocean air that does wonders for your mind. It is so nice to just get away and relax. It was about 70 degrees yesterday and we never saw the sun. It doesn't matter what the weather is, it's always beautiful on the water. We actually had to go buy sweatshirts (I packed a little too quickly) since it is so cold at night. Bill thinks it was a part of my ploy to go to the outlets, but I promise that was not my plan... although I would sacrifice and go for him if he really wanted to. *wink, wink*

Still no word on our next appointment. They are supposed to call and reschedule, but I think Bill will probably have to call tomorrow. I am hoping we can go in this Thursday and sign papers. Bill's general practioner called on Thursday to check on him and explained why it was cancelled... at least someone explained it! It turns out that there is a mistake in the write up of the trial and they need to correct it before he signs the paperwork. Hopefully the board at the City of Hope will get it taken care of Tuesday, and we can get this party started!

Beach Bound

Thank you all for the kind words of encouragement. I am in constant battle with myself about whether or not I should be so honest about our day to day ups and downs. I just can't pretend they don't exist, and as I have said before, this is my therapy. I have serious issues with the "pity" idea and the very last thing I want is for everyone to feel sorry for us. So please know that I am not trying to be a martyr, it's just that some days I have to be honest with myself about this crisis... which transfers onto the blog.

We are off to Carlsbad this weekend to stay and Norm and Rose's condo. They selflessly offered it to us when we inquired about the next available weekend. Needless to say, we desperately need some time away. We are so excited!!

Bad News

I wish I had good news... the appointment tomorrow at the City of Hope was cancelled this evening. They said the new drugs for the study were not approved yet and the paperwork is not done for necessary tests to be run. The disappointment is astounding and the heartache is even worse. It is not easy to stay positive and upbeat when treatment hasn't started and appointments are constantly cancelled and rescheduled. It is even harder to maintain strength when you see the one you love with all your soul in extreme pain, both physically and mentally. My heart hurts tonight...

HOPE...

We have officially survived (and ended) Tyler's birthday week celebration. You know it's bad when I walk in the door from work and he asks, "Did you bring another present home for me?" The kids in my class and past parents at my school were beyond generous and bought him an insane amount of gifts. I'm sure you can all imagine how neglected he is... poor baby. ;)

We are eagerly awaiting our appointment on Thursday at the City of Hope. Bill is still a little unsure as to what is going to happen, but just going there has to get us one step closer to treatment. *fingers crossed* In a perfect world we will sign papers, get all prerequisite tests complete, and he'll be ready to start treatment the following Monday. He has had a few days of feeling "it," which is very achy and uncomfortable. Thankfully they finally gave him some medications to help the ease the pain, which is also helping him to sleep. He learned the hard way about taking a pain killer an hour before Tyler was supposed to wake up. Once my mom came and got him, he was free to sleep at his leisure... which is just what the doctor ordered.

Terrible Twos?

Everyone refers to the terrible twos as being a trying time in a toddler's (and parent's) life. We thought we were off the hook when Tyler breezed through the twos without a hitch. I can almost count on one hand how many times he has had a colossal temper tantrum. Although today we evaded a huge tantrum, he definitely showed signs of the "threatening threes" as we are so fondly calling them. Today I heard a countless "No," "I don't want to..." "That's mine..." Well, you get the point. We are so very fortunate to have a child who really is happy all the time. He's not usually moody or even cranky very often. Holy cow, today was a different day! It seems like everything was a battle, and I am exhausted. It usually takes all of about 3 minutes to put him to bed and tonight was struggle just to get his pajamas on... Although we are pretty sure we are going to keep him, today I would have traded him for a nickle.

I know I will never get my answer but I can't help wondering about the root of Tyler's attitude today. I'd be crazy to think that he doesn't sense something going on here and feel the stress in our lives. Kids are far smarter than we give them credit for. Although I try to keep his life as "normal" as possible, the reality is that we are in a crisis. It's a toss up between being 3, feeling the stress, or maybe a little of both... probably the latter.