Saturday, August 30, 2008

Prayers are Powerful

I just finished the book that I got yesterday called The Last Lecture. It was a truly amazing story that was inspirational! His attitude about life never changed throughout his illness. I went online last night and watched his "Last Lecture" and read his blog that was updated regularly by him. If you have a chance, the blog is astonishing.

There is a parent at my school going through chemo right now as I type this. I should clarify, she is not just a parent, but a friend, an inspiration, and a hero to many. Just being in the same room with her is invigorating. She would make a huge lunch and invite us (the teachers) to her house during our break for a home-made feast. I had her oldest son in 6th grade 4 years ago (now a sophomore), and her youngest is now entering 6th grade. They have 3 kids. She had breast cancer 5 years ago and had a full mastectomy and was cancer-free. Over the summer she found a swollen lymph node under her arm that she "had a feeling" wasn't right. They removed lymph nodes, ran tests, and discovered an area higher in her chest that is cancerous. She is going through chemo now and having a tough time with it. "Sick" doesn't even begin to describe it. If you have any room on your prayer list, please pray for her and her family as they travel on this rocky road. It breaks my heart to hear about this happening to her, knowing full well we are following right behind her on the chemo trail. I pray for strength... for ALL of us.

Friday, August 29, 2008

The Last Day

Today was the last day! It didn't come soon enough. He left early the last 2 days, but stuck it out for the week. We went and picked up his slides of the lymph node that was removed, and we both assumed that we were picking up "slides" of pictures... nope! They are 11 slides of the lymph node sliced ultra thin and dyed different colors. They are kind of interesting to see. Not at all what we expected - then again, none of this is what we expected! Now we have everything we need to go to the City of Hope, except the actual appointment. We will try calling tomorrow, but will probably have to wait until Tuesday. At least he doesn't have work to worry about.

I got a book FedExed to me today from a dear childhood friend. Although we don't talk very often, we keep in contact through our mom's, who never stop talking. :) It's called The Last Lecture by Randy Pausch. Most of you have probably heard of it, as he was recently in the news at the end of July when he lost his life to pancreatic cancer. I have just barely started the book and am anxious to get back to it. It is not a sob story about being ill with cancer, but a life story about living everyday to the fullest (because you just never know) and living out your childhood dreams. I am already so inspired by it, and I'm only on page 34. It is a quick read that I highly recommend!

Wednesday, August 27, 2008

Only 2 More Days!

Bill only has 2 more days of work before going out on disability. I pray they pass quickly so he can have restful days and take it easy. This seems like the longest week waiting until he is finally done. Everyday I try to talk him into leaving early, and everyday he tells me NO. I figured it can't hurt to try! His work ethic is way too strong for me to crack... (one of the things I love about him.)

We are headed to the Hyatt in Newport Beach this Sunday-Monday! Ron had a free night that he arranged for us to use. (It even comes with babysitting.) Tyler will stay with my mom and Ron for the night, which should be interesting in itself. He hasn't stayed anywhere without me since he was a baby. I wonder when the last time was that they slept with a 3-year-old in the bed? Good times! (We are NOT "family bed" people.) I have a feeling my mom will end up taking him back to our house so he can sleep in his own bed, but shshsh, don't tell her I said that. They will for sure need a vacation after!!

Tuesday, August 26, 2008

Today's Appointment

Our appointment today was very informative, yet I could see Bill was uneasy. First things first... the brain scan was for sure normal, he confirmed that. The fluid in his lung came back "suggestive" but not "diagnostic" for melanoma. I don't know exactly what that means, and I don't want to start making assumptions, but it did not come back negative. My (uneducated) guess would be that it either is or will be eventually, in the lung. The doctor also said the cancer is causing the fluid in there. Since it is metastatic (spread) they will still treat systemically (the whole body), so that doesn't really change treatment. He wanted to biopsy the mass in his groin before going to the City of Hope. Bill showed some anxiety over that, especially after the whole lung draining incident, so he decided to bypass that and just put an assumption in the report that it IS in fact cancer caused by melanoma.

The doctor said we need to get to the City of Hope (probably next week, or the following week) and research being part of a study. They could possibly have something with strong/hard/intense treatment that would act faster then regular chemo. OR... they may say do "X,Y, and Z" and give our current oncologist the formula for his treatment. OR... they may have a different idea that we don't know about yet. So, long story short - we still don't know have an exact treatment plan yet. That is when Bill's frustration set in. He is so tired of waiting (as am I) and just wants to get started. The doctor completely understood and said that he would rather him wait an extra week to get the best treatment, instead of rushing into something that could disqualify him for a study. Some studies have requirements that the patient hasn't received any "cancer drugs" for 3 months prior to applying for a special program. Ugh! Sorry for the dry medical post today.

Monday, August 25, 2008

Heinz 57... A Variety

Well, my first day is over and summer is officially gone! I pretty much spent the day getting hug after hug from everyone. It was awesome!! To instantly feel supported and know that I have so many shoulders to cry on is unreal. The best part is that I know I have a slew of people I can find to talk about things, or most importantly, NOT talk about things.

Tyler did really well on my first day back. No surprise there since my mom was here. He usually has a little adjustment period after summer is over. She and Ron took him to Ruby's for lunch (their usual place), and he later divulged he got to have diet cherry coke. He hasn't quite mastered the art of not telling mom and dad what grandma and grandpa let him do. We tease him that he is going to have to work for Greyhound, since he throws them under the bus every chance he gets! Preschool starts a week from tomorrow - THAT will be the real test!

Tomorrow we head to the oncologist (in Irvine) for our last appointment before the City of Hope. We are hoping they make the appointment for us and send all of the paperwork over. I am definitely learning a lot about how all of this works. Even if I do all our homework on this end, things still get delayed. I was talking to a Director at the district office (a suit on the hill, as we like to call them) and he gave me great advice. He said, "Bill's job is to get better and fight, your job is to push paper, make appointments, and get all the forms organized." So true! At least I can do something to not feel so helpless. Bill finally said tonight that he was over this "working" thing. Thank goodness! He is SO tired after he gets home that it is not worth spending every ounce of "good" energy he has on work, instead of our 3 year old. Tyler deserves to have that energy, not Starbucks! Sorry, just my $.02 worth...

Sunday, August 24, 2008

Test Results!!

We are home! It is kind of bitter-sweet though, since the beach was a nice escape. I actually forgot about things for a few minutes, and I think Bill did too. We played on the beach, ate, played cards, ate, sat around, ate... you get the gist. We had an absolute blast! It was just what the doctor ordered... no pun intended.

When we got home and got the mail, I instantly saw he had a few envelopes from his doctor's office. I assumed they were test results, and I honestly wasn't sure I was ready for them. We were still on a high from the beach and I wasn't ready for it to end. Well, here we go...

The brain scan from last week came back NORMAL and his doctor even wrote a little note, "Looks Good!" and a happy face. The PET scan is only showing the cancer in the groin. I am (obviously) not a doctor, but I did notice it said "metabolically active" and "aggressive" when describing the mass. It is 7.7cm X 5.7cm. You all know I busted out the ruler when I saw that. He comments now that he can feel it and sometimes it is sore and causes pain. No wonder, it's pretty big. The only results we don't have are the tests from the fluid they drained from his lung. We will see the oncologist Tuesday afternoon to formally go over everything.

I officially go back to work tomorrow. I am excited to be busy again in a world that doesn't revolve around cancer. I am much more comfortable talking about everything now. It took me a few weeks to be able to get the words out without choking up. I actually am able to talk about it easily and somehow can separate the emotion from the facts of the diagnosis. Now, if I sit down and think about the road that is in front of us, ugh, I'm a mess. It's a helpless feeling seeing someone you love so much hurting so desperately. The only thing I can do is love him with everything I have, and pray for his strength to fight!

Saturday, August 23, 2008

Last Night

Last night was hysterical! The 3 of us are staying in the master bedroom because it has a small chair that folds into a little bed that is about 18 inches off the ground, however it does not have rails on it like his bed at home. Now I'm sure you see where this is going... He was so excited to have his "very own cozy bed". Well lo and behold, we heard a rather large THUD around 10:30pm and expected crying to follow, only to find he stayed asleep! We got him back in bed, no harm, no foul. Around 2:00am Bill got up to go to the bathroom, and I thought I should probably check on Tyler. I felt around the bed, and couldn't find him. He had fallen off again and was sound asleep on the floor. I discovered him just in time to avoid Bill stepping on him on his way to the bathroom. We have no idea how long he was sleeping down there, but the poor thing was freezing! I guess I'm definitely out for the Mother of the Year Award again this year. Oh well, onto next year.

Friday, August 22, 2008

The Beach

We are here at the beach house and it is amazing! I'm not sure we are ever going to leave... I hope Norm and Rose don't mind. Imagine redecorating your house and taking an issue of Architecture Digest to replicate - THAT is how incredible it is here. Not to mention, it is on the water. Even Tyler said, "Grandma, this is a cool house." It takes a lot to impress a (almost) 3-year-old. Bill is thrilled to be here too.

I called the City of Hope today for an appointment, and before getting to that step the oncologist has to fax over all of his medical records. I can't even schedule it... even with the referral. Do poodles jump through these hoops too? We go back to the oncologist Tuesday for test results (brain scan and lung fluid), and he ensured us that he will have the whole "package" ready to go, so we don't leave a stone unturned. The waiting is the hardest part.

I know I started this blog saying I don't know how often I will post, but it has turned into my new passion. The positive feedback helps, too! :) So many of you have shown concern that I am adding another stress onto my plate by updating so frequently. I really enjoy posting on here, and I even catch myself writing things down during the course of the day to remind me of things I want to say in my posts. I know, I know, a little Type A. While I'm not quitting my day job, I think I could easily do this for a living. I just don't want the real life drama that has come with my new passion. I guess then I wouldn't have much to blog about. Murphy's Law for you!

Thursday, August 21, 2008

One More Thing

The second thing I packed was SANGRIA!! Got to keep the priorities straight. I know Ann mentioned stocking up, but one can never be too prepared!

Sorry... a little late

I have been busy trying to get my classroom ready for yet another school year. Year 13 to be exact... sorry, mom and dad, for making you feel old. I know once we get to the City of Hope, my time to prep and do odds and ends in there will be limited. Luckily, I teach with an AMAZING team of teachers who are helpful beyond belief. The support I have at work is one that cannot be paralleled. I am so fortunate in that aspect. I don't know how many people wake up in the morning and are excited to go to work everyday... I can't imagine it any other way.

Bill and I are working on his disability papers and the hoops to jump through are unreal. He is planning on September 1st being his last day. I tried to talk him into leaving sooner, but he wouldn't hear of it. We got the City referral today and I'll call in the morning to make his first appointment. We are both so ready to get the ball rolling. It has been a slow week, with a few tears. Today was a really good day, which makes for a really nice evening. I hate seeing his limited energy used up at work, then he's exhausted at home. Selfishly, I want it the other way around. :) Neither of us are eating much these days... not good. No news here, but I am not a "cooker" as Tyler would say. My mom came to babysit today, and I came home (from teaching a computer class) to a tureen of potato soup that was so appreciated, not to mention, delicious! Just the smell made my mouth water. It has been a challenge to keep the kitchen stocked with anything but toddler food. I forgot how nice a warm meal tasted! It definitely beats a bowl of cereal! Bill loved the soup, too, which says a lot. He is still having issues keeping food down, though.

We are both so excited to go to the beach house this weekend. It is going to be so nice to just relax and hang out. The first thing I packed was sunscreen... I can't stress it enough, WEAR SUNSCREEN! Needless to say, we won't be sunbathing this weekend! My child will probably never get his natural source of vitamin D from the sun - but if that means no skin cancer, then I'm good with it!

Wednesday, August 20, 2008

Brain Scan

Bill has his brain scan MRI today at 3:30. He had an MRI of his neck about a month ago, and the ENT showed us all the details from it. The results were...YES, he does have a brain, and now I have seen it. As a wife, I think that there have been a few times when I wanted to see proof... Since the neck MRI didn't scan the entire brain, he goes back today for a complete scan. After this will be off to the City of Hope. The oncologist is being very careful to have all tests done and everything set so we don't waste any time once we get there. I really like this oncologist (he reminds me of a younger Allen Alda). I can also appreciate the fact that he could see beyond his capabilities and is getting him the care necessary to treat this thing! He has also offered to stay in contact with us while we are there to help us make decisions or answer questions. I find it interesting that his undergrad degree (from USC!) is in Religion. Those of you in the medical field are probably familiar with the irony of the religious/science debate.

Tuesday, August 19, 2008

Nothing too exciting...

Just another regular day today. Not too exciting, which in our world right now, is a good sign. Bill should be getting his brain scan sometime this week, but we haven't received the referral yet to make the appointment.

We are going away this weekend, but not to worry, I'll take the computer! We are going down to Leucadia (Carlsbad) from Friday to Sunday. We are so excited to stay in Rose and Norm's (friends of Joe and Ann) beautiful condo on the beach. I go back to work on Monday, so it is the last hoorah of my summer. Ann and Sharon will probably go with us (Joe will be on a train to Chicago, yes, train). I told Bill that I wasn't going if his mom wasn't going. He agreed, so we were prepared to kidnap her if need be. Thankfully, she agreed to come willingly.

I am so grateful to have not only married such an amazing man, but one with an incredible family. The word lucky doesn't even begin to describe how I feel to have such wonderful in-laws. They are a huge support in every way possible... we could not do this without them. Now I have myself crying and it's not even 9am.

I am so impressed that my grandparents could post from heaven. ;) I always knew that if my Grandma had lived to get on a computer she'd love all of blogging, e-mailing, and searching on the Internet. I am also pleased to see she even used Internet slang in her last post. St. Peter must have given a class... she always was an amazing woman!!

Monday, August 18, 2008

Ring Update

The ring has been found! Bill went into work this morning and found his ring. We were texting, so it was the shortened version of the story, but it seems someone found it and left it for him. Yay!!

Sunday, August 17, 2008

I have created a monster!

Well, I thought I'd create the blog to keep everyone up to date on all the happenings and it's turning into my therapy session. Bill knew I had created it but didn't show a huge interest in reading it... which was fine with me, I totally understood.

He asked me to show it to him last night, and he read the whole thing. At first he said he wasn't sure he wanted to keep reading it, that it might be too hard. Again, another valid point. Well, that went out the window, and now I constantly catch him checking it for comments. I was pretty impressed he even posted - although my OCD kicked in, and I had to proofread it first! ;) So if you feel inclined... the comments are read and enjoyed!

My First Entry

Hello, Everyone!

I just want to say that I appreciate all the interest in this little hill in our life by all of you. I appreciate the out pouring of thoughts and prayers, and all the other support that just make things a bit more comfortable right now. I really can't express my gratitude. I am honestly overwhelmed by the amount of people that we have heard from.

I apologize right now for not answering my phone sometimes and talking directly to you. The evening is especially tough due to breathing issues that I am having. It is hard to have a conversation with anyone when my breathing is really bad. Now that Jackie started the blog I have an avenue for communication that doesn't take talking. However, I want you all to know how much I value those phone calls from you.

I am extremely anxious to form a plan and get going on a treatment plan. The waiting is the worst part of this whole mess. Sometimes I feel like I will be sent to the funny farm before I get treated. I am trying so hard to stay positive and on a regular schedule. I even played golf today. Granted, I only really got through 11 holes (I think I was toast at about the 8th hole) I still managed to humiliate myself for a few hours.

I will post as much as I can and really enjoy reading your comments. Thank you, thank you, thank you. We really can't thank you enough for the thoughts and prayers. Please keep them coming. I love you all and can't wait to see you all at the remission party when this is all over. It will probably held at the Niccoli's. At least that is where I hear all the best parties happen! I just know it is hard to book a date!

We will keep you posted...

Bill

Soup Plantation

Well, last night Bill had a craving for Soup Plantation, and when he gets a craving these days we tend to act on it fast! His weight loss and lack of appetite means he just about gets any type of meal he wants... even if I have to shove it down his throat.

Unfortunately it was the worst meal we (the 3 of us) have ever eaten. It was awful and definitely not worth $23.87. Well, after dinner we decided to go by my mom and Ron's house since we were just down the street. We were sitting around the table and Bill held up his left hand to show me his wedding ring was gone. Since he has lost so much weight, it wasn't tight anymore. He thought maybe he threw it away at Soup Plantation when he washed his hands in the bathroom. His ring was thick, heavy, and solid platinum, so it wasn't cheap. We talked about going back but decided there was no way since it was 9:00pm and Tyler needed to go to bed, not to mention, Bill was really spent too. We had a glimmer of hope that he didn't wear it to dinner and it was sitting at home on the counter. My mom and Ron wanted us to call if it was at home, and if it wasn't, Ron was going to go to the restaurant and dig in the trash (he is a good man). Bill and I debated calling and saying we found it, since neither of us wanted him to dumpster dive. When I called my mom and told her we didn't find it, but really didn't want Ron to go down there, she said, "Oh, he already left and is digging through trash as we speak." (He IS a good man.) He even took trash home to dig through, but sadly, no ring yet.

I know I should be upset that it's lost, but truly, although sentimental, it is just a ring. In the big picture, there are so many other things that are more important in life. I just can't worry about it. I don't have any room left to anguish over something that can eventually be replaced. I keep telling Bill, that we ARE still married, whether he wears the ring or not. He thought he was off the hook... hahaha

Saturday, August 16, 2008

It worked!

Although he felt worse last night after the lung draining, it seems to have helped. He had to be at work at 4:45 this morning, which means the alarm goes off around 3:30. I'll be the first to admit... that is a little early for me. I can usually lie in bed and in the quiet of the early hour I can hear him breathing as he gets ready. The shortness of breath was pretty prominent. I am happy to say that this morning I couldn't hear him breathing!! (Words I never thought I'd be happy about!) The draining seems to have helped. One small step...

Friday, August 15, 2008

We Got In!

Thankfully, the lung was drained! It was not a pleasant experience for him, very uncomfortable, but it was rather fast, so hopefully he will notice a difference tomorrow. They did say it would seem a little worse, before it feels better, but by morning he should feel a difference. Keeping our fingers crossed!

One thing I forgot when I sent out the link to the blog... please feel free to send it to other people I may have missed.

First Entry

This blog is a little window into our crazy life right now. Hopefully through these updates everyone can stay informed at their own pace. I can't promise daily updates, but for sure I will keep up on any new happenings.

Current Status: Bill is (hopefully) going in today to have his lung drained. The Dr thinks he will feel better just having that done. That should take away the shortness of breath and relieve some of the coughing.

So far what we know...
There is fluid in his lung and his spleen is enlarged. There is a cancer mass in his groin area that probably can't be removed, however treatment would work on reducing it. They will treat his whole system with chemo, or another type of drug, in case there is another cancer spot that wasn't seen by the scan. We are off to the City of Hope probably next week or the week after to get a plan and start treatment. They also have clinical trials available if that is an avenue we need to explore. We are hanging in there and truly just taking this day by day. Thank you for all your prayers and well wishes... keep praying!!