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!