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.
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...
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...
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.
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!
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. :)
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!
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.
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.
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.
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 1.2cmThis Time = 1.6 x 1.0cmInfected Lymph Node #2:Last Time = 2.1 x 1.3cmThis Time = 1.8 x 1.0cmThey 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!!
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!
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!
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!
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. ;)
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.
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.
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...
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!
