The Shark and his Dad

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

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

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

Miracles

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

New Perspective

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

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

New News

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

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

End of the Weekend

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

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

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

Too Young

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

Public Service Announcement

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

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

Day 1 of Treatment

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

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

Today's Happenings

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

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

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

Tomorrow!

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

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

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

The Weekend

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

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

Doctor's Appoinment

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

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

Good News X 3

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

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

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

New Test Results

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

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

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

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

Preschool

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

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

Comments

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

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

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

Strength?

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

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

A Few Answers

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

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

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

Question: How long will he be in treatment?

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

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

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

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

Today at HOPE

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

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

A Quick Update

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

Unbelievable!

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

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