The Pressure...

Cancer patients are pressured to always have a positive attitude. The second they try to show vulnerability or fear, people panic and shut them out, saying, "Don't be negative. You have to stay positive." Granted, I am not a cancer patient, but I have watched it happen to Bill. Even if you are not the patient, it is hard to talk to others about anything negative because you seem as though you have lost hope. The irony is that we feel the need to appear upbeat, courageous, and positive, even when we don't feel any of those emotions at that given moment.

Quite honestly, there are times that I write something on the blog that is far more positive than I feel or brighter than the reality. I think I do this for many different reasons... to reassure loved ones, to protect family members, to fool myself? If I don't write it, maybe it won't be true. We hear a lot about how essential a positive outlook is. It almost makes me afraid to acknowledge a bad day for fear that it somehow will result in a setback for us. Honesty really is the BEST policy. I think being honest is far more important than falsifying a positive face to the world. I am in NO WAY suggesting that we want to wallow in depression, anger, or bitterness. I think a positive outlook IS important. I just think I need to explain that we can't keep pressuring ourselves to always be upbeat, especially if that's not the way we feel at that specific moment.

Living with cancer (as a patient or a caregiver), you still have good days and bad... Just like everyone else. Please don't panic if you read about a few thorns on the rosebush. ;)

Swelling...

It has been a long few days, but so far, so good. The swelling has stayed to a minimum, although he hasn't really gotten out of bed... except for tonight. We went to dinner tonight, and he managed to eat and didn't end up puffed up like a balloon. He does have (it seems) most of the fluid back, and it has only been 5 days since the last draining. That is a little disheartening, and I can tell he is frustrated by it. He generally just does not feel well... even more so than normal. Luckily, it has been easy for him to sleep the majority of the day. He was pretty wiped after going to dinner tonight. Hopefully, the swelling stays down!

Our (Long) Hospital Visit

Today was a little crazy! I got up earlier than normal to go into my classroom and get organized for my sub. Both boys were asleep when I left, so I didn't really talk to Bill before leaving. After I got home he told me that he was "better" and the swelling was gone. (Information that would have helpful earlier...) I, of course, made him stand up and show me. Sure enough, he looked normal and the swelling was gone. I already had a sub, so we decided to go out to breakfast, which required Bill getting up and showering. I let Lety (our nanny) go home since I was going to be around and Bill didn't need to go to the doctor. The three of us had a nice time at breakfast and then we headed home...

Holy Cow! Just being up for about two hours made the lower half of his body puff up like a balloon. It was far worse than anything I have ever seen! Not only his abdomen was swollen, but his entire groin area down to his calves was huge! It was scary! I called my mom (since I had let Lety go) and we met halfway to drop off Tyler. Bill and I were off to the Emergency Room. Good times...

Not a shock, but we waited for hours and hours. The ER doctor didn't even fully examine him and said, "It's normal, but we can drain more today." After having it done so many times, it surely didn't seem normal. So, Bill agreed and that meant we got to go to radiology where our friends (the nurses) work. You know you have been there too many times when you see a nurse and say, "Hey, Trisha, how's your daughter? Have you figured out preschool yet?" I can tell you where Susan has traveled and where Kathy's kids went to college. That is how many hours we have spent there. The doctor came in, and I made him actually examine Bill to make sure it was as normal as the ER doctor assumed. He did NOT recommend being drained again since the majority of the fluid wasn't in the abdomen and the infection risk is exponential. He explained that the body sometimes takes awhile to redistribute its fluid, and after draining so much, it's now gathering in odd places.

THE KICKER... by the time the radiologist came in, Bill had been lying down for about three hours. The swelling had pretty much gone back down, in fact, it was almost back to normal. The moral of story is... take it easy and rest and there won't be much swelling! Go figure...

Help...

I have figured something out. We are always so graciously given the offer, "Whatever you need, let me know." I think every person we know has said those words at one time or another. I have not been candid about how very fortunate we are with incredible love and support. There are countless people who would jump to help, should we need it.

The tricky part is having to ask for help when you are not accustomed to seeking assistance of others. I have to say the best kind of help is when I don't have to ask. Sometimes I get so overwhelmed that I don't know where to begin to even seek help. This weekend my mother and sister-in-law came over and we ran errands. Sound exciting?? I know, not really, but the fact that they just acted and came, and helped me get things done (without me having to ask), was the greatest gift! I had the best time! A girlfriend of mine came over Saturday night and brought dinner, then another friend dropped off an apple pie (from Oak Glen) and neither required my effort in any way. This was all after Christina, who works at the City of Hope, made a house call to check out Bill's stomach.

I have to add that my staff at work is also brilliant in this area. My team and and my principal automatically do things to help, without me uttering a word. They literally brainstorm ways to help us, and then offer me a list of choices to make my life easier. I would be lost (in so many ways) without them.

I am taking the day off tomorrow in order to make a trip back to the doctor. Although it doesn't seem infected, his stomach is lopsided and getting more so as time goes on. In fact, his belly button isn't center anymore because he is so swollen on one side. It is also much harder on that side than the other one. Since he's had it done a few times, he feels confident that he knows how it should feel, and it just feels different than usual. It is good news though, that he is not running a fever or vomiting, so at least we have that in our corner. I'll update the outcome!

HUGE Improvement!

Today was so much better than the past few days! Bill and I had a long heart-to-heart last night, which helped me to feel better about things. I don't think it helped Bill as much, since he is still struggling with the pain management. Although the draining went as planned, he is having some serious soreness and swelling on one side (where they went in). We will probably head back to the hospital tomorrow to have him checked out. Better safe than sorry!

I have to extend a huge thank you to everyone worried about us. We have been inundated with calls, e-mails, comments, etc. of encouraging words. Please know that a few bad days does not, in any way, mean we are giving up hope or throwing in the towel. We greatly appreciate all of the thoughts and prayers.

Cancer has many, many layers. You have to be a pretty hardy soul to make it through from start to finish. If you are the patient, you have to find the first layer of strength just to absorb the major blow after the initial diagnosis. Then it's onto the world of scans and waiting and appointments and referrals and medications... Many more layers are needed for those.

Being the caregiver ... we need different layers. I call it protection. We need a layer, actually an iron glove, to fit tightly around our hearts, because they take such a beating over time. We have to find another layer of strength to sit and watch as our loved ones endure endless trials and tribulations, just to live. We also have to find a voice we've never used before to be their advocate when they can't speak for themselves. Even if speaking leads to a high-pitched falsetto. ;) God only knows where that layer of stamina comes from when the cancer-grip tightens and the stress level rises. God only knows...

A Tough One

As I sit here and contemplate my post, I am arguing with my brain about how much I should write or not write. It has been a tough few days for us... all of us. Although Bill doesn't read the blog very often (if ever) I feel I can expand on some of my emotions, but at the same time, I would never want him to be uncomfortable or feel his trust has been tampered. One of the many fine lines I walk each day.

The draining today went well and although I thought otherwise... they were able to take 7 liters! (Last time it was only 6... only?) Unfortunately, he still feels pretty crummy, so it's a disguised blessing. I am worried... Probably not a surprise to most people. Let me just emphasize, that I am more worried than ever before. Why, you ask? Because I can tell Bill is worried. He is sad, reserved, and glum... as am I. He told me yesterday that he felt like he was dying. My heart hurts every time I replay his words in my head. Tears well up... the whole nine yards. I have had a few breakdowns the past 24 hours, and don't see an end to them anytime soon. I was doing so well for so long, but I guess it was bound to catch up with me. I am happy to report that I am, in fact, human. (Bill was having his doubts.) My eyes hurt, my nose is red, and I feel (and look) like I have been hit by a truck.

I don't know what it is about the magical power of mothers, but I walked in the door convinced I had it together and was done crying for the day. I sat down, asked my mom an unrelated question, and I never heard the answer. My voice went into a squeaky falsetto of some incoherent words, followed by streaming tears, and what is known as, "the ugly cry". No matter the age, you never outgrow the safe feeling of a mother's love. I know how badly it pains my mom to see me so upset; she sits and cries with me... and then I think about Bill's mom and I cry some more.

I know I am a serious downer tonight... but please rest assured that tomorrow is a new day and this is one wild roller coaster. Things change rapidly and moods change by the hour. We will get through this...

Facebook

Bill was able to get a draining appointment for tomorrow! Thank goodness, because he has had quite a few very uncomfortable and painful days. He takes a few extra pain killers each day, and is still battling the pain. Hopefully the draining tomorrow will alleviate some of it.

It's official... I am addicted to Facebook and can't stop! What a great way to stay in touch with people (as if e-mail isn't enough) and "talk" to old friends. If you aren't a member yet, I highly recommend you check it out. Although I feel like I am the last one on the planet to join. How in the world did we ever live without the Internet?

It's Back

The fluid is back and in full force! He is entering the extreme uncomfortable stage; and you can see and feel the difference in his abdomen. The last drainage was January 30th, so it's been just shy of three weeks. I highly doubt they will be able to get six liters again, but it's building up pretty quickly, and nothing at this point would surprise me. We are hoping he'll be able to get an appointment by the end of the week.

We had a really nice three-day weekend. If only every weekend were slightly extended... wouldn't it help the budget cuts to have a four-day school week? The education budget is pretty hairy right now, and many people are facing RIF notices. Although I feel pretty secure with twelve years under my belt, I have quite a few friends face to face with a pink slip. I hope and pray that the politicians have enough sense to keep the budget crisis as far away from the classroom as possible. Just because kids don't vote does not mean they shouldn't be considered. *Stepping off my soapbox now.*

Friendship

Friendship is a funny thing. Some are meant to be your life for a year, some a few years, and some forever. Life changes and friends change to accomodate certain needs. We are so blessed to have such wonderful people in our lives that literally would do anything to help take away some of our heartache. Webster defines 'friend' as one attached to another by affection or esteem. I define it as... one with whom you can pick up where you left off, the time elasped is insignificant; the laughs and tears continue without missing a beat; the love is unconditional. That is a true friend. We are so extremely grateful for everyone who has helped us the past few months... words merely do not do justice for the insane love and support we recieve on a daily basis. We could not do this without you!

Happy Valentine's Day!

We had a wonderful Valentine's Day. We went to breakfast this morning, then Tyler and I ran some errands. I have never been a huge fan of this "holiday", but I have to admit, after this one, I may be converting.

Bill and I spent the afternoon/evening at a beautiful wedding. It was a reminder of love, dedication, and selflessness. It helps that the union was between two people who, no doubt, are in for long haul. The ceremony was personal, unforgettable, and so incredibly special. It was an honor to celebrate with the loving couple, and it was truly the perfect Valentine's Day! I will forever have an amazing memory of such a beautiful day!

Roller Coasters

I have always had a thing for roller coasters. I think it's a requirement living so close to Disneyland. It is my secret love affair (along with the New York Times crossword puzzle). I love the excitement, the anxiousness, and the feeling of my stomach being left at the top of the hill. The rush of it all absolutely thrills me. There is a reason that it only lasts a minute or two... it's the extent of your adrenaline capabilities. That being said, I am ready to get off this roller coaster. I sometimes wonder if I have had all I can handle. This is one wild ride and it's not meant for the light-hearted. In fact, it's not meant for anyone with a heart... heavy, light, or otherwise.

Bill has slept the past few days, and I have a feeling it's the medication kicking in with full force. Even though he is only on it every other day, it seems to accumulate and wear him out. His stomach is slowly filling with fluid again, but luckily his doctor gave him a "prescription" to have it done every two weeks, or as needed. Just having the appointment available is comforting. We will NEVER let it get as full as the last time. Being proactive is definitely key!

Freezing Cold!

I forgot to mention a few details of our appointment on Monday. First, I am kicking myself because I didn't notice if he lost weight since the last appointment. I have a good reason, though. We were in the "vitals" room and Bill got his temperature taken. Usually an easy task, however the thermometer he was using couldn't get a read. No problem, he was moved to another station with a new thermometer. That one took longer than usual to register and then it came up (converted) 94.3! No wonder he is freezing all the time... literally! I honestly have never heard of anyone (alive) who had such a low temp. The technician even took it twice to be sure, and then it was never mentioned again during our appointment. Lo and behold, Bill got a call on Tuesday to pick up a new prescription because he has a low Thyroid. That makes medication number eleven that he takes daily. For someone who is not a "pill popper", it is quite a bit. The new pain medicine (Oxycontin) is really working well, and he uses the Vicodin at night... combined with the synthetic marijuana, he goes to bed feeling NO pain... if you know what I mean. ;)

Good News!

Woohoo! I am more than pleased to report that the tumor has not grown! Although the doctor said it didn't shrink; it is great news that it stayed the same. He is staying on the trial for another round (2 months) and hopefully will have as much energy this go-round.

I am the resident caregiver/paper pusher/record keeper/organizer... etc. for our household. I keep track of his meds and the log we have to keep for the trial. I think they referred to me as the "spy" today. Bill's job is strictly to be the patient. I have been extremely preoccupied trying to fill out paperwork to get Bill's short-term disability insurance switched over to long-term disability. I have answered every question imaginable, in short of "What's your favorite color?" Thank goodness for the Internet... I don't know how we survived without it. I also wonder how in the world people commit insurance fraud - it is a lot of work!! It was a full-time job to complete the recent batch.

We got additional paperwork today to get Bill a handicap placard. It is a long time coming and will make matters so much easier for him. There are times he doesn't want to go places because the walk from the parking lot is too daunting. Our Disneyland passes expire soon, so maybe we can break in the new placard before the month ends.

Two Steps Forward...

I hope I didn't celebrate too soon, but the past few days haven't been as "up" as the previous few weeks. I have a strong feeling being back on the meds is catching up to him. Bill is back sleeping most of the day and only getting up a few hours at a time. I actually meant to post last night, but I put Tyler to bed and decided to stay with Bill for awhile and ended up falling asleep... around 8:15! At some point in the ealry morning hours Tyler crawled into bed with us, I have no recollection of this, nor do I about Bill asking me if he should go downstairs and turn the lights/TV/computer off. Apparently I said yes. I was so tired and obviously needed some extra sleep. I think I got more sleep last night than I have in the past week combined. It was so nice!

Monday is the BIG appointment and although I am not nearly as nervous, the butterflies are creeping up on me. It seems cruel to have to go through this every two months; actually, cruel doesn't even begin to describe what this is... hell is more like it. Sometimes I have an out of body experience and think, "This can't be real. How are we getting through? Can we survive?" Then I stop myself, close my eyes, grit my teeth and run - If you are going through hell, never stop or slow down to analyze, just run until you get to the other side and can escape the heat.

Does the highest score win?

Today was payback for the 18 holes. Poor Bill was tired and slept all day, and he mentioned being sore all over. I teased him by showing my understanding that since he swung the club so many more times than the others; it must be normal to be so achy... par for the course, if you will. ;)

18 Holes!

Golf was extremely successful and Bill played a full 18 holes! He was pretty proud of himself, but I really think that Joe and I were even prouder of him. Not the fact that he was able to play, but the fact that he wanted to play. Those are two very different scenarios.

I am not having as much anxiety about the scans on Monday. I think because it has been so amazing having him "around" (mentally speaking), that whatever Monday brings, these wonderful weeks can't be taken away from us.

Today was a great day - all around, in so many respects. Without going into too much unnecessary detail, other family members have been stressed about a totally unrelated topic. I just have to acknowledge how thankful I am that some of our prayers have, in fact, been answered. Not that I ever really doubted it, but I have a renewed faith in our justice system, and it is comforting to know that right and wrong still holds ground in our court system. If I could insert a sound effect here... it would be a sigh of relief! ;)

Scans

All went well today with the scans. He got a different "flavor" of barium and said it wasn't as bad, so he didn't have any issues keeping it down. He is even playing golf tomorrow! (I told you he was feeling better!) It says a lot that he is willing to get up at the crack of dawn, too. Now I am on a quest to plan our trip to Seattle so I can get him there at his peak. It really has been a transformation the past few weeks. We have enjoyed it so much!

Another Great Weekend

We had an incredible weekend and I can honestly say that I don't want it to end. Since the stomach draining, the Tipifarnib reduction, and the new pain meds, Bill is a totally different person. I didn't realize how much I missed him until he became "human" again and ventured into the world with us. It's a weird feeling to miss someone who is asleep upstairs. He even looks like a new person! We have both had a realization that quality of life weighs far more than any medication out there. The selfish part of me wants BOTH the medication and the new "Old Bill", but I know deep down he is trying to get me to see that it may not happen that way. We are truly living each day for what it is... a gift.

Bill goes for his scans tomorrow and then in a week we head to the City of Hope for the results. If it stays the same or shrinks, he gets to stay on the trial. They cannot reduce the drugs any further or he has to stop the trial completely. Again, we pray this formula works its magic.