We interrupt this blogging for some important announcements long neglected commitments:
Last time I wrote a Miracle Monday post historically capturing our journey with this brain tumor, we had made a decision to attempt an experimental surgery in Sacramento with a surgeon named Dr. Michael Edwards. Dr. Edwards came very highly recommended from Brian’s radiation oncologist in Denver. With the type of Brian’s tumor, Grade III Anaplastic Astrocytoma, the best chances for longer-term survival were with radiation and chemotherapy following a debulking surgery. The more they could get out, the less was remaining to treat with these other conventional regimens and the more effective they were. Any surgery, we knew, would increase Brian’s odds tremendously, and we were very willing to oblige after Dr. Edwards explained the process.
Dr. Edwards worked in conjunction with a neurologist for this procedure. The surgery process was two-fold. The first step of the surgery was to actually remove part of the skull near where they hoped to resect, but rather than a resection, they would place a group of electrodes attached to a small film ON TOP OF BRIAN’S BRAIN, leave the cords attached to electrodes accessible for the next step, and close Brian back up. For the next two days, the electrodes were plugged into a receiving end in a special monitoring ward in this hospital where a technician constantly watched the monitors of all the patients for possible abnormal brain activity - seizures, etc. The neurologist performed the next step. He would plug his stimulating machine-like contraption into the accessible wires and perform a series of neurological tests right there in Brian’s room. Yes, right out of Science-fiction, ladies and gentlemen, Brian had brain surgery attaching some electrodes to his brain and came out with wires protruding from the gauze turban he now wore while a neurologist turned some dials and flipped some switches giving a small signal to that area of the brain to see how Brian reacted. It was TRIPPY!!! He would ask Brian to read a couple paragraphs from a magazine and then flip the switch to the different electrodes. Sometimes nothing unusual happened and sometimes Brian couldn’t speak or would slur greatly. The neurologist would ask simple commands while stimulating the electrodes and determine if Brian could follow the directions. Sometimes Brian did, sometimes he had no recollection of the question. What the neurologist was doing was creating a map of Brian’s brain, determining which functions like speech, memory, and comprehension were located near those electrodes. You see the issue with brain surgery is this – the tumor is not healthy. It is not functioning brain tissue providing any merit to Brian’s basic functions. The tissue SURROUNDING it MAY BE. To cut through that tissue would mean possibly severing the neurological path making certain functions possible – like speaking, remembering, comprehending, moving, etc. At this point, with the pathology and before any other treatments, that was not a risk worth taking for then 24-year-old Brian. If they could find a section of brain that did not have important functions through which they could enter to remove the tumor, then the resection surgery would have less risk. Unfortunately, this testing was proving that Brian did indeed have MANY vital functions surrounding this tumor. After 2 days of recovery from the first portion of the surgery, and 1 day of stimulation, we were regretfully informed that they could not do a resection, but would simply remove the electrode grid, and close Brian back up. We were devastated, defeated and despondent.
This hospital stay was as dark a time as our first week of diagnosis. It was perhaps darker because we were in California – Brian, me, his parents, and his brothers - with no support system. It was 1997 before cell phones were as prevalent and nationwide affordable as they are today. In addition, the surgeries and stimulation of the brain caused Brian’s brain to swell to new proportions. Up until this point, the only symptom Brian had of this tumor was the sensory seizure he had experienced the first night of diagnosis. With this new swelling came headaches, slurred speech, occasional lip twitching (another mild seizure) and the aforementioned sensory seizures. They were harder to control and harder to predict. The doctors were unsure if he would completely regain his functions. Brian was in an incredible amount of discomfort and it was agonizing to witness – for all of us. We also knew that Brian had undergone all of this, yet we were right back where we started – only we had lost a few weeks of treatment time. In fact, the swelling caused even a LARGER area to now treat with radiation upon return to Denver.
We had placed an unrealistic amount of hope in this one doctor and this one procedure. Anytime we put too much of our hope in things of the world and in imperfect human beings, we are bound to be disappointed at some point in time. It is unavoidable. After 8 days in the hospital, we all left Sacramento. Brian, Jan (his mom) and I flew back to Denver, and the rest of his family flew back to Illinois.
This is a very difficult week to assess for any rays of light and hope, let alone miracles. The week was awful. Brian was worse than when we started. There were new problems to handle with the lip twitching seizures and occasional slurred speech. He was now experiencing headaches and had to take large amounts of steroids to reduce the swelling. It was incredibly unpleasant. However, in life, when you look deep, you can see the hand of God working through your existence. First of all, while cell phones were not prevalent, I was able to use the hospital phone and calling cards to touch base with my family. I spoke with several relatives who would pray with me on the phone and pray over our situation. Our contact circle was increasing. Caterpillar employees Brian had worked with in 3 different cities in Illinois as well as Denver were deeply concerned and praying over our situation. Lockheed Martin employees I had worked with in now 4 different groups and 2 different states were concerned and praying for us. Our parent’s employers, our sibling’s employers, teachers, cousins, aunts, uncles, (and we have A LOT of cousins, aunts and uncles) and employers and friends of theirs were all praying for us. I didn’t even realize the multitude of people that were becoming engrossed in our situation and praying for us. I remember calling cousin Rhonda once around 1 a.m., feeling completely desperate and lost. When she answered, I bawled that I was so sorry to call her at such a time, but reminded her she said call anytime, to which she replied, “It’s okay, I was up waiting for your phone call. God warned me you were going to call, and I have been sitting her praying for you.” She prayed for me and I felt so much peace after the phone call. At one point in time, in a telephone conversation with Rhonda while I was in the waiting room for the surgery, she said, “I am going to pray that God sends you someone in ministry that lays hands on and prays for the sick. The Bible specifically states we are to have the elders lay hands on the sick and pray for their healing.” When I got off the phone, I sat next to a lady in the waiting room – a tall, striking lady whose husband was having routine gall bladder surgery. We began a conversation as she could see the desperation in my face. She stated that her husband was the pastor at an inner city church and they would be happy to pray for us if we wanted. Of course we wanted this. I told her of my recent conversation with Rhonda and she replied, “We do that. When my husband is through with his surgery, we will do this for you.” It was pretty amazing.
While this week was desperate and trying, it was all shaping according to God’s purpose. We didn’t know it. We couldn’t see it. We didn’t really even feel it. However, I find when I look back on all times of my life, regardless of sure signs of God’s presence, all of our circumstances have come together for a greater purpose or for our good. The difference is that we have learned to trust it is there despite the blatancy of it. This was one of the first weeks that trust was truly tested. God uses our most difficult times to dray us closer to Him – make us realize He is all we need and to shape us more into His image. God is always working in the spiritual realm despite our earthly circumstances. We would learn this more in the next few weeks. As far as I was concerned, if I never saw Sacramento again, it would be too soon. That was July 1997.
God had other plans.
For more Miracle Monday posts, visit Beth at A Mom's Life.
KEEP BELIEVING
Gavin lost his first tooth last Friday. Each of my boys reacted differently.
It's hard to be the younger brother sometimes. Also, please excuse the mess. I had been busy blogging doing laundry all day.
KEEP BELIEVING
So, the time surrounding my wedding anniversary is hexed with lots of less than desirable events. April 19 is the date. It is also the anniversary of the Oklahoma City bombings and the Waco, Texas standoff. April 20 is the anniversary of Hitlers birthday and the Columbine High School Massacre (and we were living in Littleton at the time. Many of my co-workers were affected.) Not exactly material for your Great Days in History episode.
This past anniversary would also mark the day of a historical event in my family. Since we believe in doing nothing easily, at 4:15 on my wedding anniversary – an hour and 15 minutes before our reservation, Gavin came in the house crying about his broken wrist. It should be noted here that Dr. Angie who, you will note has no MD behind her name, diagnosed Gavin 2 days prior with a bruised wrist. He explained that he had broken his wrist at his friend’s house while he was jumping off the swing. According to Gavin, he usually jumps 10 feet high, but he jumped 11 feet high this day and braced his landing with his hands, breaking his wrist. Dr. Angie (who has no M.D. behind her name) analyzed the situation. Move fingers, check.. Squeeze my hand, check. Bend hand back., check. Bend hand forward, check. Touch alleged broken wrist area. Pain. Okay, sensitive to the touch, all functions working, diagnosis: Bruised Wrist. We went on our merry way, but Gavin would tell everyone who would listen how he broke his wrist this day for the next two days. What a funny little boy.
So, when he came in complaining of his broken wrist on Saturday, I almost retorted with my now reflex response, ‘bruised wrist’ until I saw the bump. He had been playing in the backyard, had a quick slip, braced himself as usual, and aggravated his bruised/broken wrist. Dr. Angie (who has no MD behind her name) decides upon advice of partners, Dr. Grandma and Dr. Grandpa, to take him to the Prompt Care. We are the only ones there on a Saturday afternoon which is nothing short of a small miracle, and are taken back within minutes. Dr. ,with MD behind his name, sees him minutes later, X-ray right away. I look at the X-Ray and almost call my hubby to tell him we will probably keep that 5:30 reservation, because Dr. Angie (who has no MD behind her name) has once again noticed there is NO BREAK in the bone. The doc with MD behind his name comes back in with his nurse explaining the bone is broken and they will cast it up and we need to follow up with an orthopedic for a permanent cast. Come again? Yeah, his wrist has a fracture, which is more like a buckle in the bone, which is why Dr. Angie (who has no MD after her name) didn’t see it with her untrained eye. Gavin, future MD behind his name, has a temporary cast and we are waiting to hear back from the orthopedic office for an appointment for what I pray will be a waterproof cast.
You can relax for the safety of my family because Dr. Angie (who has no MD behind her name) has had her licence removed and will not even be allowed to play a doctor at home.
P.S. We still had our anniversary night out, everything was just delayed an hour.
KEEP BELIEVING
So, a couple weeks ago, we have this really bad week, what with the test results, the flat tire that resulted in the purchase of TWO tires, the new crappy chemotherapy we found out about, and the aerodynamic trampoline that decided to give our tree a hug that costs $100 to fix. I post about every little thing that happened that week. I get great comments and I know by posting all these really bad things, I am not only giving you a glimpse into our lives, but I’m also looking for comment and email luv. Yah, I admit it.
So, then I get an email from my friend, Pinky, because we are email friends now since that is what you can do in blogland after you realize, “hey I kinda dig this person and man, I wish we really could get together for a real cup of coffee. I think I’ll share my junk mail email just in case with her and see if she is a stalker or not if we become friends” So, she asks me for my real address and tells me she’s gonna send a little sumin’ my way ‘just because.’ And we all know the ‘just because’ is that she feels sorry for us and wants to do something to make me feel better, but that’s okay because the ‘just because’ really wasn’t disguised as anything else. So, this past Friday, I get this super cute bracelet that just screams Spring and Summer and some packets of Stevia because I had asked her about this. (It is an herb sweetener that the FDA won’t allow to be named a sweetener. They have to call it a dietary supplement. It has kind of an earthy/woodsy undertone to it, making it a great pairing with coffee or tea). Pinky is my friend and I know her real name. So, I’m all, ‘Wow, I have great friends.’
Then I get a notice that I won Jenn’s book give away. And I am thinking: “Huh! Interesting luck, but sort of fishy being that I had a really bad week and all.” She’s all, “well, I knew you’d think that and I couldn’t believe that the random number generator thingie I used generated your number.” Only, Jenn doesn’t talk with words like, “thingie” and “I’m all” because she is like, smart. Then I get an award from Tootsie Farklepants who is like the queen poop (not cussing here) of witty, funny and entertaining. So, I’m thinking, WOW, THEY REALY LIKE ME, kind of like Meg thought last week. And speaking of Meg, she gives me this award because she likes me, too.
And now I am thinking, “okay, so they like me, but this is a lot of luv around the time I have been wallowing in self-pity.”
And I fill out a survey and I get this free 
because I was willing to pay $10 to ship it, so I’m thinking, “Senseo didn’t know I had a bad week, so that wasn’t pity. This is just my good luck week.”
So, yeah, then I get this award 
from JCK at Mothersribe who sometimes writes about sex type things unrelated to sex – like this one about chocolate and this one about kids birthday parties, etc. But, once again, I’m thinking, ‘Pshya, whatever. This is getting strange because no one could really like me this much.’ Then I am brought back to my years of being a flat-chested, children-sizes-wearing young teenager and the hell associated with looking like you are 9 when you are FOURTEEN and no boy takes you very seriously, and you start to think, ‘no one could really like me this much,’ and I decided to get over myself.
THEN, I hear from Holly at June Cleaver Nirvana and she tells me I won her Book giveaway, Sleeping with Ward Cleaver, and now I’m all standing with my arms folded in front of me, hip slightly turned out, tapping my foot, saying, “what gives? I want to be luved because I’m ALL THAT, not because I’m ALL THAT PITIFUL.” And she’s all, ‘no seriously, you won. It was random and even if you didn’t win, Jennifer, the author, was going to send you a copy. It really must be your lucky week.” So, I’m thinking, well, nothing left to lose, I was gonna get a copy of the book regardless, so why would she lie?
In the end, I really don’t care, even if the awards are slightly out of pity, I’m getting better at accepting help and there is no denying that part of writing about the pitiful parts of your life on your blog is to generate some luv.
THANKS FOR THE AWARDS AND THANKS FOR THE JOY YOU BRING TO MY EVERYDAY LIFE!
KEEP BELIEVING
Brian,
11 years ago today, I donned my princess wedding dress in great anticipation of becoming Mrs. Brian O’Neill. 11 years ago today, I stood in front of hundreds of people and God and declared my life-long love and commitment to you, and you to me. 11 years ago today, I became the luckiest woman alive.
One month later, we would find out you had brain cancer. The next 3 years, while we were still newlyweds, would bring us despair, surgeries, chemotherapy, insurance battles, abstinence from sex so we could bank sperm for a possible future family, uncertainty, and turmoil. The next year would bring more chemo, a move, a job change, more uncertainty. The next few years would bring infertility, adoptions, another job change and move. We would spend our 10 year anniversary in a romantic little restaurant in San Francisco with your brothers by our sides sharing our eclectic dinners because you would be going in for major surgery the next day to remove part of your brain tumor, yet again. This time, we would be warned of the risks of paralysis and speech deficits, just to name a few. Your brothers shared our anniversary because, well, everyone wanted to share that night with you not knowing what tomorrow would bring. The next year would bring more heartache, more struggles and more chemotherapy. We would live our lives from test result to test result, dreading what may come next. We would find ourselves here, fighting every day for balance between normal and battling cancer.
There is no perfect balance.
If someone would have told me on our wedding day what would evolve over the next 11 years in our lives in detail and asked me if I would marry you anyway, my answer would be a resounding, ABSOULUTELY.
You see, if I had all the knowledge of what I just detailed, I would also have known that we would be blessed because of each other. I would have known that I would get the shot-gun seat to your spiritual growth. I would have known that because of you, I would become a better person. I would have known that our trials, while surreal and sometimes horrific, would shape our character by the way we choose to adhere to our bond, believe in an all-knowing God, and respond to the trials. I would have known that we would have a beautiful family of 4, just not in a traditional way. I would have known that you would bring me joy and happiness and love and strength - emotions so raw, pure, and true that they hurt. I would have known that as I watch you in anguish fight for your life every day living in fear of becoming a family without you, you would be the one giving me the strength to know we would be okay. You would be the one consoling me. You would be the one continuing to lift me up telling me, “You can do it, baby. You got mad skills. You got it going on. You are beautiful. You are better than you give yourself credit. I believe in you.” I would have known that every life you touch has a new piece of happiness they didn’t even know was missing – the laughter you bring, the sarcasm, the witticisms, the thoughts you provoke, the insight you provide.
I would know all that and I would want it all again.
I love you with a indescribable passion,
So, I just realized today is my blogoversary. One year ago today, I created this humble blog. Back then, I created this blog for one reason: to keep our family and friends apprised of our situation in California last year when we went to Stanford for Brian’s major surgery. We were living in Canada at the time and I needed one way to keep everyone informed without struggling through phone calls or emails when I didn’t have a laptop and my own address book, etc. I had never heard of a blog until about a year prior when my 12 year old niece, Lauren, sent me and her entire address book an email stating, “check out my blog” on Myspace or something. I remember telling her I read it every so often, and she asked why I didn’t comment. Little did I know then that comments = crack to bloggers. So, I tried to use Myspace, but was technologically illiterate to do so and running on about 4 hours of sleep a night in preparation for our surgical trip for which we did not know how long we would say. I googled blogs (why does spellcheck recognize blog, but not google? Do they still not realize that google is a verb now?), and found blogspot. It was easy. In hindsight, if I’d known where blogging would take me, I would have used a different platform to have more comment control to meet the commenters. I can’t believe I am saying that I desire to “meet” the commenters on the blog. It wasn’t until November of this past year that I decided to blog like others. It has been the strangest ride. There is so much about the blog I did not know and expect.
My brother and his fiance, Heather, gave me this a couple weeks ago. Couldn't be more true.
So, thank you to everyone that has made this blogging thing so fun, rewarding, inspiring, encouraging, and thought-provoking. Thank you to those that comment. Thank you to those that send me private emails. Thank you to my Lord who continues to bless us through various unexpected avenues in our lives - blogs being one of them.
KEEP BELIEVING
The last two weeks of posts have been so full of venting, frustration, self-pity, fatigue, desperation, small attempts at inspiration, etc., that I feel I must continue with that style. Since our lives are so complicated and somewhat sad, wouldn't it be expected that the only things I write on this blog continue to be about Brian and how he fares with chemotherapy and doctors' appointments and test results?
I mean knowing that Brian is undergoing chemotherapy and battling fatigue and semi-sick feelings daily, do you really want to still hear how my boys' no longer fight over who sits in the recliner because their new favorite seat in the house is in a box wedged between the wall and the recliner playing video games?
And it seems ridiculous to write about how I farted a long, gross, rumbling fart while driving home from the doctor's office giving us bad news, outlining a new chemotherapy plan and cracked up at myself while slyly saying to Brian, "you want me don't you" and he said, helplessly and matter of factly, "well, umm, actually, yeah." Besides I wouldn't write such incriminating words about myself.
And you really want to know about how we sit around and look lovingly and longingly at each other and our children playing family games and spending quality time together instead of knowing I battle Gavin daily against his will to USE THE DARN BATHROOM WHILE HE CONTINUES TO JUMP UP AND DOWN WITH HIS HANDS BETWEEN HIS LEG and I struggle with Grant constantly to WATCH HIS POTTY MOUTH or I simply open the door and tell them to GO PLAY because they are driving me nuts in the house.
I need to continue to tell you how Brian is amazing and goes to work each day despite not feeling great because you don't want to hear how we spend each night licking our big screen and salivating over the fact that CSI-NY, 30 Rock, The Office, Earl (Brian, not me), and Scrubs are back on the air.
You don't want to hear that I didn't like Michael Clayton because, while I thought it had a potentially great story line, I thought it was choppy and predictable with too many unrelated elements thrown in to try to unsuccessfully portray it as art instead of a suspenseful thriller, therefore making it neither, when we will soon be back in the doctors office analyzing more bloodwork making sure Brian is not at risk for infection and that we are on track for the next round of chemo.
So I won't bore you with our otherwise everyday mundane activities.
KEEP BELIEVING
Super quick note just to let you know how Brian did yesterday.
Ed, Brian's dad, took him and stayed with him for the majority of the time. One of the first things they were told was that the drugs are not covered by insurance... WHAT THE?!?!?! Both drugs are FDA approved (Avastin and CPT-11), but not for the treatment of a brain tumor. We have had 2 doctors and I researched online one other clinic, that recommends this treatment of drugs if and when Temodar fails. Since the drug companies are trying to get this FDA approved for treatment of advanced stage gliomas (Brian's type) they are giving a goodwill use of the drugs at no cost. I pray that continues or that at least there is some way the drugs are covered. They told us not to worry. There are other ways as well.
So, the drips each took over an hour. They monitored Brian's blood pressure since the Avastin can cause a rise in that. He was fine. He was at the clinic for around 4+ hours total. After, Ed and Jan (Brian's folks), Brian and I went to lunch at Olive Garden where Brian's appetite was fine. Due to the blood pressure side effect above, he is supposed to stay away from caffeine and due to the nasty side effect of the unmentionable diarrhea of the other drug, he is supposed to stay away from stomach irritants and spicy foods. Nice.
All afternoon, Brian was bit tired, but not too bad. His stomach felt a bit queasy, but nothing major. He did not have a great evening appetite. He watched TV most evening with the boys. He and I watched Michael Clayton last night. I didn't love it. This morning he did not have much of a breakfast appetite. He is at work today and has worked pretty much a full day.
We pray the rest of the days until the next cycle are easy on him and allow him rest and healing. We do not know if these effects will be cumulative - meaning getting worse each day or with the next cycle, etc. I am just so thankful we are out of the cold and flu season as he enters this chemo since this attacks the immune system as so many chemos do. I would hate to have to keep the boys away from Brian.
That's about it for now. In true Angie form, my super quick note is 500 words and 5 paragraphs, but come on, I know you wanted to know all this.
KEEP BELIEVING
Once upon a time, a long, long time ago, in a land far, far away, a little girl named Kim at Jogging in Circles awarded Angie some blog love/bling. Angie was delighted to see her name on Kim's site as Kim is a daily read of Angie's and feels very connected to her new friend constantly finding new things in common. However, an evil spell fell upon Angie and she completely forgot to pick up the award, acknowledge the award, SPEAK of the award, let alone pass on the award. Recently, the evil spell of forgetfulness was broken from Angie and she is now posting this award for all the blogosphere to see before she rides off into the sunset and lives happily ever after.
Angie is passing this award to MamaGeek at What Works for Us because the amazing photos Mamageek takes make Angie seethe with amateur photographer envy smile. LOTS.
Angie is also passing this award to Ya...About That because of the wonderful insightful comment she left on Angie's post about not being so good at taking help and because she just smiles whenever she reads Mommica. Every time.
The evil forgetfulness spell was lifted from Angie by Jenn at Juggling Life, when Angie found herself the recipient of not one, but two more awards this weekend from her good blog friend and daily read. A bling award and a REAL award. She won a book. A real, touchable, turn the pages book. She will have to see if she remembers how to maneuver through one of those since mostly all she reads these days are blogs in her spare time. Angie hopes Jenn doesn't disagree with Angie's plan for the book, but when she is finished, she plans to pay it forward to the Central Illinois Cancer Center's book borrowing center. Since Brian and someone he loves, whether it be Angie or his family, will be spending a few hours every two weeks in the cancer center, Angie thinks she may have some more time for some reading, so this comes at a very opportune time. Jenn insists it was truly random and that it wasn't fixed out of guilt for the pity party Angie threw for herself ALL. LAST. WEEK. (Angie would like to interject here that she enjoys commenting on Jenn's site ever so much more now that Jenn removed the awful, terrible, word verification.)
The bling award from Jenn is this:
Which could not be more appropriate since Angie is surrounded by all things dirty and disgusting to her, yet hilarious to little boys. She needs all the princess/girly stuff she can get, and she is pretty sure this tiara is the perfect size.
Angie is passing this award to two beautiful ladies, who also had bad weeks last week.
1 Heather at 3 boys under my roof because she is also surrounded by boys and needs some princess flare.
2 Damama T because she has become a great mentor to Angie even if she doesn't realize it.
3 One more who didn't have such a bad week, but is surrounded by boys, needs her own tiara and is one of the funniest ladies Angie has ever read. JUNE CLEAVER NIRVANA.
In Angie's real life kingdom, her prince and husband, Brian will be starting his latest quest to slay the dragon named brain tumor with a new sword and shield called chemotherapy. Brian will spend hours at the cancer center every other Monday, so he is training with his IPod and tunes. Since Brian's latest IPod holds 160 gig of whatever the heck Brian pleases, Brian has been spending some time arming his IPod with as much as possible and asked his princess, Angie, to help him find good photos for him to load. Pictures of Angie and the boys and the family in general. Since Angie is the only one who uses the camera and downloads photos, she obviously isn't in any of the photos and is the only member of the kingdom who knows the secret hiding places of the best photos because there are hundreds of undeveloped pictures in all kinds of folders cluttering up the computer. When lovingly teasing her prince, and asking what he was going to do with the photos, 'ogle and browse through pictures of Angie and boys all morning?' the handsome prince replied, "Well, yes, actually, that is the primary reason as to why I am there going through this, so it would be neat to have pictures on my IPod to browse through reminding me while I listen to my tunes getting this stuff, " reminding the princess, Angie, why she fell in love with and married this amazing prince all those years ago.
KEEP BELIEVING
Did I mention my sister, Mindi, her husband, Matt, and son, Logan, are coming to visit? Did I mention IT IS MID-APRIL?!!?!First of all, thank you to so many who have been sure to let us know you are thinking and praying for us this past week as results day approached. It is always a difficult week.
Let me start by informing you Brian has not been feeling great. He has suffered from some serious insomnia that seems to only be remedied with sleeping aids - not that there's anything wrong with that- but we would certainly prefer he get natural restful sleep. He has had some new "sensations" on the right side of his body and that is about all the more detail I can give you because I don't understand them and he can't explain them any better. He can't explain them any better because it is simply a strange, crazy type of cancer that slowly inflicts different parts of his body depending on which part of the brain is affected. It is not like he can say, "my arm hurts" or "I can't breathe well because of my lungs." Rather, he gets slight headaches (are they sinus or something worse?) and feelings or lack of feelings in his body parts for short durations at a time (Did he sleep on it wrong, did he over use it, or is it something worse?) It is just very difficult to grasp and explain.
Yesterday, we heard from the Stanford team. The areas that changed last time have continued to change. It COULD be radiation effect, but the team tends to hypothesize it is tumor (still shudder when I hear the word) progression. They recommend a change in systemic approach (English: a new chemo (I had to ask, too, don't feel bad)). Dr Recht, the neuro-oncologist at Stanford Cancer Center recommends Avastin (anti-angiogenesis: works to deplete the blood supply to the target area) in conjunction with a chemo in a different family than the Temodar Brian has been taking, namely CPT-11 (Irinotecan). These chemos are administered via an IV drip in the clinic. It has been 8-1/2 years since Brian received a chemo IV drip.
The Peoria doctor gave us the results today. Pretty sad when you can hear from across the country AND their specialist board/panel has reviewed your results AND gets back to you with a consensus before your local doctor even sees you initially. That just gives you an insight into the type of care Brian receives here - very adequate, but not very timely. Dr. G and the Peoria radiologist are in agreement with Stanford that we COULD be seeing radiation changes, but need to treat it as though it is tumor *shudder* progression and change Brian's treatment plan. Dr. G. has used Avastin and CPT-11 on other glioblastoma patients who stopped responding to Temodar. The Avastin is an anti-angiogenesis (agent attacking growing blood vessels) and the CPT-11 is a more standard chemotherapy. Brain tumor patients using the cocktail have shown favorable MRI results, but the clinical results are yet to be determined (translation: increase in prognosis, change or decrease in symptoms. I had to ask again, too.) due to its more recent use with brain tumor *shudder* patients.
The Avastin and CPT-11 will be administered in the clinic every two weeks. Side effects are pretty typical for chemo patients. Brian will also have blood drawn every two weeks to administer his levels - white cell, red cell, platelet, liver, etc. The CPT-11 takes about 90 minutes to administer. The Avastin takes about an hour. There will also be an anti-emetic administered (no puking allowed drug. That one I knew from the past.) This new adventure commences Monday, April 14, 2008 at 8:30 am.
Our reaction to this news:
Not overly surprised given how Brian has been feeling (both)
Sad (me)
Hopeful (both)
Frustrated (both)
Resilient (Brian)
Scared (me)
Withdrawn (me)
Crabby (me)
Comforting (Brian)
Terrible role-reversal in our reactions, I realize, but this often happens. When one of us reacts a certain way to news, the other picks up the slack. The roles will probably reverse or we will meet in the middle soon. It is early in the process.
I don't have a lot of words of wisdom or insight. This is very serious, but we have to deal with it with whatever resources available. We need to be lifted up in oh so many ways.
I try to say optimistic and encouraging and uplifting on this blog. I do this for good reason. First of all, OCCASIONALLY, Brian actually reads what I spend all this time preparing. Also, I re-read what I write and what YOU write A LOT - for encouragement, insight, laughter, love, validation, hope, etc. This needs to be a source of constant hope for us. Make no mistake, what Brian needs is a miracle. Science will not heal Brian from what he has. However, science alone did not heal Brian in the past. Our Savior healed Brian via various medical and scientific avenues. This time, science has little left to offer. Fortunately for us, our Savior never runs out. We know we cannot will God into healing Brian. Regardless, we hold tight to a higher purpose and meaning for all of this in our lives. We simply have to.
Now I gotta go figure out how to explain that to our boys.
KEEP BELIEVING
Because of our situation with Brian’s health/illness, we are often overwhelmed with offers of help from others. If you are like most, you know what I mean. “What can I do to help?” “Let me watch the boys for you.” “Can I bring you meals?” It is a great pouring of support from all around; however, there is a problem with this. WE ARE TERRIBLE AT ACCEPTING THE HELP. Because seriously, right now, we don’t need the help. We are coping fine for now. The kids are a welcome distraction and the fact that the “herd” of friends they travel with often ends up in my back yard, brings me joy because while they inevitably try to involve me in every tiff, I also get to enjoy their laughter and squeals. Cooking dinner is often one thing in my day that takes me away and makes me feel productive and creative. It brings me joy again. Dishes, um, not so much. Wanna come over at 7 and do my dishes while I enjoy a glass of red and watch? The thing is, I know there are some that would actually do this for me, but you can see why I may have a hard time accepting THAT bit of help.
Help is just something I don’t feel worthy of.
For instance, my group of church girlfriends who have blessed my life immeasurably, are constantly offering to help. I think they are rather some strange group of alien life in human form, though, because upon feeling overwhelmed recently, one said, “Let me come clean your house. I like cleaning houses.” Whaaaa??? Another said, “Oh LAUNDRY! I’ll help you do your laundry. I LOVE LAUNDRY!” I’m telling you, not human. Anyway, instead, they take me out. Well, we meet a lot as a group and I don’t think that would change regardless of our situation, but I feel like they are taking me out. They take me out and we laugh and talk and kick back and they make me feel like Angie, girlfriend, instead of Angie, wife of the cancer patient. Recently, however one of the girls, who is a stylist, gave me a gift cert for anything I wanted. It couldn’t have been more perfect because I was in dire need of a cut and I have no one I see regularly. Brian gave me the spa cert for Valentines Day and I was excited because I say they also cut hair there. Brian was disappointed because he did not give me the certificate to get a haircut. He insisted I use Shawn’s offer despite my reluctance. I am just not good at taking the offers of help. I was blessed by Shawn’s generosity. Was she blessed in return? I didn’t see how she could be. One of my girlfriends last week told me when I mentioned how difficult this was for me, “You know what my Grandma used to tell me you say when someone offers or does something nice for you?” “What?” I asked her. “You say, THANK YOU.” I told Shawn ‘thank you.’
K, J, and S (me in the mirror flashing)
(left to right) K, K, J, J, me, C, S
Brian has very few passions in his life. Well, that sounds wrong, but what I mean is that he is not selfish with his time or money and doesn’t demand things that I know many other men do that take these resources away from his family. He is, however VERY PASSIONATE about music. He loves his IPOD with a passion. He loves his 187 gig of music with a passion. It is his hobby and he derives great joy from all kinds of music. Not like my quirkiness with music, but great joy. Due to Brian’s weak right side, he often accidentally drops or kicks things. Over Thanksgiving, Brian dropped his beloved IPOD. He lost everything on it, restored factory settings, and reloaded it within the week. However, for the last few weeks, it has not been working correctly. This is Brian’s number one hobby. I mentioned this to Cheryl, my sister in law, who said she would mention it to Brian’s brother, Sean, because Sean knows of a place in town that quotes to repair IPOD’s. I told Brian Sean would probably look into repairing his IPOD. So, imagine Brian’s shock on Saturday when brother Sean walks in and says, “Bo, I know you mentioned you wanted me to bring my IPOD since yours isn’t working correctly, but I talked to Murph (Brian’s other brother) and we just couldn’t have that, so why don’t you go load this up instead?” Out of his pocket, he pulls a spanking new 160 gig IPOD and hands it to Brian. Brian is near speechless, “What are you doing?” he asks Sean. Sean says, “Happy birthday?” Brian’s birthday was November. It is April. We all know this was an amazing act of kindness and generosity from Brian’s family for Brian’s benefit and comfort. Brian was trembling later with humble gratitude, but I don’t think his family saw it. The difficulty with accepting the gift is that given different circumstances, his family would have said BUMMER regarding his IPOD and we would be currently researching IPOD’s. However, given different circumstances, Brian would not have dropped his IPOD, so how can you compare?
These gifts come because of our difficult circumstances. Brian said the hard part is that he doesn’t want to be “THAT GUY” that brings out these amazing sides of people’s kindness, “I know that sounds stupid to you, probably,” he said. “Makes perfect sense to me. Neither do I, but we are,” I told him. I hate one-sided generosity and what I feel is one-sided friendship. While Brian and I know we are good people and we love having friends, sometimes we feel as if merely our friendship is not quite enough in return. I am coming to the conclusion that IT IS. Brian and I constantly struggle with finding good in our circumstances. Maybe one of the goods is helping others find that special something inside themselves causing them to come out of their own comfort zone and give out of the genuine goodness in their heart. Maybe?
KEEP BELIEVING
So, no Miracle Monday post recapping our journey here today. I am taking a much needed break from reliving the painful first part of our journey with Brian's brain tumor. The journey has been difficult enough living it daily in the present. Reliving the past has been just too draining. Brian has not been feeling great and results are this Wednesday, so I wanted to live in the moment. I even took several days off my computer time altogether allowing Grant to play Webkinz and Brian to load his new IPOD. I missed my blog and my bloggers and my comments, so tonight I spent two hours chipping away at my unread blogs on Google Reader. And I got to ZERO. ZERO UNREAD. In the time I have typed this, I am back up to 5. Have you people nothing else to do? This google reader is like laundry - it is never truly finished.
So, I took a break and spent the last 4 days actually enjoying my real life - the one with kids and a house and a yard and family. I weeded, I cooked, I entertained, I ate and drank, I played, I exercized, I grocery shopped, I cleaned (a tiny bit anyway) and I laughed. We had Brian's family for dinner on Saturday night. There is nothing like being with the ones that love and know you best to encourage you, humble you, delight you and remind you that you are still the same human being despite the hardship and illness facing you. Makes you forget and actually feel normal for a while.
I did my Tae-Bo work out on Saturday morning. Does anyone still do Billy Blanks and Tae-bo? I love it regardless, and I do it in the comfort and privacy of my own basement so I don't really care. Although, now that Gavin and Grant have opinions and are keenly aware of their surroundings, they inform me I am doing it wrong or too slowly. I may have to start doing this workout in my locked bedroom soon in hopes of retaining my last shreds of dignity. Anyway, I can barely walk today. Honestly, I was reaching down on the ground at church this morning for one of the 73 pieces of paper we acquire between our programs & handouts, and the boys crafts & handouts and thought I may stay frozen in that position for a week. It would have felt better than it did when I returned to upright. OUCH!
The boys played outside ALL. WEEKEND. LONG. Friday afternoon and evening, they played outside with friends until dark. Saturday, they were outside from 10:30 am with friends until 9:30 pm with cousins playing nonstop. I do not know how they do it. I jumped on the trampoline for about 3-1/2 minutes and thought my quads would make a great accompaniment for the peanut butter sandwiches the boys took a 20 minute break for earlier. Sunday, they spent 6 hours playing outside with more friends. They are having a great time, but I have to start throwing down some serious rules about roaming the neighborhood. They travel in packs, so it is getting harder. I think I need to read Lord of the Flies again soon to give me perspective on what even the most refined boys are capable of when unsupervised and unstructured. Just kidding, I love seeing kids just be kids. Plus, I don't read anything but blogs these days.
Brian did work on the house. He put up a decorative cap on a stairway railing (hard to explain, but the top part of the halfwall leading downstairs.) He and his dad and brother also finally put up the basketball goal Aunt Deb and Uncle Paul gave us over Christmas. So, the boys can ignore that with the rest of their toys and tick us off and we can idly threaten, again, to give their toys away. Gavin is getting smart about this empty threat and has suggested he sell his toys for money, instead, so he can buy a Wii.
We ended the weekend with a visitation for a family friend. That sucked as a way to end an otherwise stellar weekend. Yes, I just said stellar. Wanna see my Bon Jovi paraphanalia to prove I am age appropriate to say stellar?
So we had such a great weekend just being regular that I didn't even take a picture. NOT ONE SINGLE PHOTO of my kids playing, of our family visiting, of Brian working and and playing and interacting. No video either, so you are just gonna have to trust me on this one.
Can you tell I am writing like I would talk instead of how I would write? That doesn't even make any sense I realize, but you know what I mean, anyway, don't you? Scary.
KEEP BELIEVING
As you can tell, I have been pretty pensive this week. Mood swings rivaling Faye Dunnaway in Mommy Dearest have plagued me. As we await test results next week, I spend a lot of time thinking. I think a lot about life. I think a lot about the cards with which we as a family have been dealt. I am up and I am down. I usually come to no conclusions except that my life is a bit of an oxymoron, a beautiful oxymoron.
I am a mother of two, yet I have never given birth. Adoption is beautiful.
I have a college degree and years of experience that I do not currently use, yet I am performing the most challenging and rewarding job I have ever filled right here at home. Parenting is beautiful.
I have a husband who was told by several doctors 11 years ago he would not be alive today, yet today he lives. God’s grace is beautiful.
Brian lost years of job promotions and opportunities due to his illness causing us to make tens of thousand less than his peers, yet he has a job that sustains us on our one income. Living within your means is beautiful.
I may not have tomorrow with my husband, yet I have today. Realizing the value of time is beautiful.
We are an unlikely and unrelated group of 4, yet we are a family. Life is beautiful.
KEEP BELIEVING
Here are some of the phrases uttered by either boy last night during the performance:
Somehow I thought it would mean more to the boys. I really did. I was wrong. Brian thought I was crazy. He was right.
KEEP BELIEVING
