Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Friday, June 22, 2012

The Latest MRI

We got the call today from Dr. Barbara.  The tumor hasn't grown and there was no new enhancement.  But it hasn't shrunk, either.  The doctor said it was "good news", but I think Adam and I were slightly deflated.  I know that "stable" is good, and is a heck of a lot better than "progressing".  It's just... well... you know.

Adam will stay at the same dose and has been told just to keep doing what he's been doing.  If you know us at all, then you have already guessed that that isn't good enough for us.  We are going to kick it up to full throttle now.  This ain't no fooling around.  This ain't no disco, mate.  We are already trying to think of what we can tweak to give Adam the best edge.  I think Adam will be switching to the full-on hardcore Atkins as of tomorrow.  No carbs.  At all.  Meat will be his new best friend.  A starving tumor is a shrinking tumor, and that's what we want.  He's starting to drink green tea again with every meal, and I'm going to be looking into what herbs/vitamins we might be able to add in or increase.  We've been worried about Adam losing any more weight, so I hesitated to put him on a zero-carb diet before.  But, we'll just have to take the risk.  I'd rather have a skinny Adam than not at all.

Just when you think you have nothing left, and you can't possibly go one more step, that's when you dig deep down and find a well of strength you never knew you had.  That's where we are right now.  Watch out, because the game... is... on.

Thursday, June 21, 2012

A Stream in the Desert

Two days ago I was struggling.  It was a hard day, emotionally and spiritually.  I felt overwhelmed with the weight that God has placed on me, my husband and my children.  I struggled with dark thoughts, and deep feelings of despair.  I cried… a lot.  Adam doesn’t have a lot of patience for me when I get in this sort of state, and after getting frustrated he started in with one of his pep-talks.  I was too tired to be defensive or argumentative, so I just sat there on the floor and listened.  He’s very matter-of-fact, my husband, and practical.  Falling apart emotionally doesn’t help the situation, so he doesn’t quite grasp why I insist on doing it. Call it a glaring difference between man and woman, I suppose.  We women cry because we need to.  It’s a release.  After emptying myself of all the tears I had, I felt better.  And Adam’s insistence on focusing on the positive helped…just a little.

After I managed to pick my worn-out body up off the floor, I started looking for some inspiration.  I went to the Bible, but decided instead to pick up a book passed onto me by a friend called Streams in the Desert.  There is a passage for everyday of the year, and I’ve picked it up a few times to read what that day’s passage was.  I found this:

“Poverty, hardship and misfortune have pressed many a life to moral heroism and spiritual greatness. Difficulty challenges energy and perseverance.   It calls into activity the strongest qualities of the soul.  It was the weights on father’s old clock that kept it going.  Many a headwind has been utilized to make port. God has appointed opposition as in incentive to faith and holy activity.  The most illustrious characters of the Bible were bruised and threshed and ground into bread for the hungry.  Abraham’s diploma styles him as ‘the father of the faithful’.  That was because he stood at the head of his class in affliction and obedience.  Jacob suffered severe threshings and grindings.  Joseph was bruised and beaten and had to go through Potiphar’s kitchen and Egypt’s prison to get to his throne.  David, hunted like a partridge on the mountain, bruised, weary and footsore, was ground into bread for a kingdom.  Paul never could have been bread for Caesar’s household if he had not endured the bruising, whippings and stonings.  He was ground into fine flour for the royal family… If for you He has appointed special trials, be assured that in His heart He has kept for you a special place.  A soul sorely bruised is a soul elect.”

I pondered that for the rest of the day, and went to check emails after everyone had gone to bed.  I read a message that mentioned Nick Vujicic, who I had never heard about, so I promptly looked him up on YouTube and watched an interview.  If you don’t know who he is, he was born without arms or legs, and is now a motivational speaker who travels the world.  In the interview, he talks about how difficult his childhood was, and how he had chosen to turn away from God because he didn’t understand “Why”.  But at the age of 15 he got his answer.  God chose to answer his question, “Why?” with another question… “Do you trust Me?”  Boy did that really hit me between the eyes.  I love God with all my heart and I believe completely that He has a plan for us.  I believe that all of this emotional bruising and beating is for a reason.  But, I’m impatient.  I want to know right now how this is going to end.  I want a document signed and stamped by God that promises me that Adam and I will share a long happy marriage together, that Ali will grow up to be a happy and functioning adult, and that someday Finlay will be able to communicate with words instead of sign language.  I want his promise that Calum will grow up unscathed from the pressure of being not only the oldest, but the only neurotypical child in his family, and I want to know that someday I will finally get some relief from my daily headaches.  Where’s my signed document? 

But, I realized that I don’t need it.  First of all, He has already promised us salvation.  This life may be hard, but we all have the comfort of knowing someday we can share in His glory, in His presence, in Heaven.  Eternity is much more significant than today.  I can’t change my situation today, no one can.  No one can make Adam, Ali and Finlay better today.  And if they did, would that make me whole?  I am only complete when Jesus lives in me.  And right now, He does.  Today.  That is all I need.  To help remind me of this, I have put a piece of paper above our picture of the Sacred Heart of Jesus in our kitchen.  It reads in large Sharpee-written letters, “Do you trust Me?”  I’ve been looking up at it probably every five minutes since it was placed up there.  And every time I look at His face and read that question, I can say with certainty, “Yes.”  Yes, Lord, I trust You… completely.

Monday, June 18, 2012

Oceans of Gratitude

I’m beginning to notice that my life is resembling what could happen if Mr. Bean married Little Miss Calamity.  I wonder if we need to set up a foundation, not to help people like us who need help, but just to help us.  This family requires teams of hardworking people just to get through each week.  I’m staggered by the crosses that continue to be piled on top of this house.  And continually amazed by the never-ending dedication and generosity of the people around us.

Thursday two lovely moms showed up in the afternoon to pick up my boys and take them to playgroup.  I can’t go until after 4:00pm, because of Adam’s infusions, but these moms have been picking up the boys and taking them right after lunch so they get to have a proper run-around.  It also gives me a little break.  I arrived at Barbara’s about 4:30pm, and the kids were having a ball.  I caught up with a couple of moms for a few minutes, when Calum came into the kitchen screaming.  I still have to force back the nausea when I remember what his left arm looked like.  The top half of his arm was bulging out over the top of his elbow.  And he was clearly in a LOT of pain.  I froze.  Simply froze.  I had no idea what to do.  Thank God one of the moms used to be an EMT, and she got down to work.  Someone got Calum a chair, and Kelly had a look at the arm.  Then she started instructing Barbara and Sam, telling them exactly what she needed.  They rushed around getting a makeshift board, ace bandage, ice pack and towel so Kelly could stabilize the arm.  I stayed by Calum’s side, talking to him and trying to comfort him the best I could.  Someone brought in some Arnica, and Sam got him a lollipop to try and distract him a bit from the pain.  At one point, Finlay came upstairs crying, and I saw out of the corner of my eye Sam scooping him up and taking him into the other room to sort him out.  Ali also came in very upset because the Wii had frozen, and Barbara ushered him back downstairs to fix it.  We discussed where to bring Calum, and Barbara got on the phone to find out if the Care Center was still open.  It wasn’t, so Kelly offered to call the ambulance.  After a moment’s deliberation we decided it was the best thing to do.  Melanie went out to move some cars to make way for the ambulance, and Luellen offered to follow the ambulance in my car so I would have it with me at the hospital.  We waited what seemed like forever, but was actually about 20 minutes.  When they arrived, the EMTs were truly impressed with Kelly’s work, and we had already taken a photo of the arm before it was wrapped, which was forwarded to the EMT’s phone.  Isn’t technology amazing?  He could then forward it onto the Emergency Room in advance of our arrival.  They carried Calum out to the ambulance, and Barbara filled up my water bottle (which is a small gesture, but so considerate I almost cried) and got a bag for Calum’s Pokemon binders.  We were off. 

At the hospital they were able to give Calum some morphine to help with the pain, but it didn’t help for very long.  The pain kept returning, and they needed to keep increasing the dose.  Finally, some evidence that he’s actually related to me.  Anyway, they rolled him into x-ray and we didn’t wait long for the result.  His arm was fractured above the elbow.  It was bad.  So bad in fact, that they couldn’t do anything for him at Winchester hospital.  The doctor informed me that we were going to Charlottesville.  I started at him blankly for several seconds.  My mind reeled.  I spluttered out, “I can’t go to Charlottesville!!  My husband… he has a brain tumor, and he needs his infusions!!  I can’t go, I just can’t!”  The doctor asked me if there was anyone that could do Adam’s meds instead of me, and I informed him that there wasn’t anyone else.  Then the doctor said something Calum will never forget as long as he lives… “If he doesn’t go to Charlottesville now he will lose his arm.”  Don’t get me wrong, the doctor was absolutely lovely, but his choice of words and in front of an 8 year-old were a big mistake.  Calum freaked out.  He was petrified that if Daddy didn’t get his medicines tonight that he would die, but he was terrified of losing his left arm.  “I don’t want Daddy to die, but what about my arm??”  He was crying and I desperately tried to figure out what to say.  I told him, “Don’t worry about Daddy, okay?  If he misses his medicines tonight he won’t die.  He will be fine.  The most important thing right now is fixing your arm, okay?  We are going to fix it.”  He calmed down and I tried to make sense of what was happening.  I suggested to Calum that we pray, so we did.  We asked God to make everything all right, to help with the pain, and fix Calum’s arm.  We both felt better afterwards, and Dr. Lovely came back in with a suggestion.  Can someone bring Adam and his medicines to me so he can come to Charlottesville with us?  We’ll be in a hospital, so if we need anything we’ll be in the right place for it.  I agreed with him, that it would definitely work, and the nurse went to get me a phone.  There wasn’t a cell phone signal to be had in the ER, so I needed the patient advocacy phone.  I called Barbara’s house and Sam answered.  I explained what was happening.  “I need someone to bring Adam here so we can go to Charlottesville, and I also need someone to watch the younger boys.  Can we make this happen?”  With an enthusiastic yes, Sam went off to discuss with Barbara what needed to be done.  It was decided that Barbara would keep Finlay and Ali overnight, but would need to go to the house to get some supplies.  Sam would come with her to help Adam pack.  Kelly’s husband was going to pick up Adam and drive him to Winchester hospital.  Done and done.  I called Adam and talked him through packing the bag for the trip.  “Go upstairs to the supplies box… no not the one in front of the linen closet, but the one blocking the top of the staircase… you need two sets of tubing and a Y-connector…  get an inch of alcohol wipes, and a big fistful of syringes… we need 4 big medicine bags and 1 small one… we’ll forget about blood work for the moment, we just need to focus on making sure you get your meds.”  I was so worried that we would forget something important, but there just wasn’t much time.  The transport people arrived to take Calum down, but I wanted to wait for Adam.  The man who was to accompany Calum knew about Pokemon and they started chatting away about who evolves into who and who does the most damage.  Calum was in heaven.  Finally, they couldn’t wait any longer, and we decided they would go on ahead and I would stay back and wait for Adam.  As luck would have it, Adam pulled up right as they were loading Calum into the ambulance, and he was able to give him a kiss goodbye.  Plim helped Adam unload all the bags into the car (it looked like we were going away for a week), and he handed me a ziplock bag full of cash.  One of the amazing moms started a collection for us, to make sure we had cash for gas, food, and a possible hotel stay.  I was so moved I started to cry, but I gathered myself together because we had a two-hour drive ahead of us, and it was already nearly dark.

The details at University of Virginia hospital are a bit fuzzy, but everything went very well.  Calum arrived safely, as did we, and he went into surgery about 1:00am.  He was out by 3:00am, and slept soundly until the doctors started their rounds around 6:30am.  Most amazingly, Adam didn’t miss a single infusion throughout the entire ordeal.  We changed his bags when we arrived in Charlottesville around 11:00pm, with me trying to prep bags on a flimsy folding table in a tiny ER room.  And we changed him again in the morning between Calum’s doctors visits.  The orthopedist was pleased with the surgery, and released Calum to go home a few hours later.  By 11:00am, we were on the road back home!

I let my friend Celeste know what had happened as we were driving home.  She offered to bring us dinner, and I gratefully accepted.  I had spoken to Barbara before we left the hospital, and the boys were doing great.  When we finally got home, I was so tired I could have died, and I collapsed into bed for an hour’s nap.  When I woke up, we changed Adam’s bags, and the three of us laid on the sofa watching movies waiting for dinner and for the little boys to arrive home.  Barbara arrived first with Ali and Finlay, and brought bags of grocery items and diapers.  She does this wonderful amazing thing for me, where she cuts up loads of different vegetables and puts them in plastic containers and jars for me.  It has got to be the coolest thing ever, and I thank God for her!  As Barbara was walking out, Celeste was coming in (we really need to consider a revolving door for this place).  She brought rotisserie chicken and tons of salad veggies and cut up fruit.  We ate like kings.  Between the two women, they provided nearly a week’s worth of groceries, which is a gift in and of itself.  I am still shattered from the hectic weekend, and it’s an absolute God-send that my fridge is still packed and I didn’t have to go grocery shopping today.  Tonight’s dinner is courtesy of another lovely friend who came over today to help prevent me from running off and finding a new family.  Or jumping off the roof.  Depending on the hour, I oscillate back and forth between the two options.

As I sit here writing this post, I’m overwhelmed with gratitude for all the people involved with Thursday’s adventure.  And this only shows the tip of the iceberg.  Since Adam’s hospitalization in December, countless numbers of people have brought meals, donated money, sent cards, offered to pray, watched the boys, transported Adam to appointments, delivered blood samples to the lab, and taken the time to read my updates on Facebook and respond to my posts.   We created a Wall of Gratitude, which consists of a poster board mounted in the hallway.  Anytime anyone has done anything we have added their name to the board.  Chances are you reading this are already on there.  It serves as a reminder of just how massive the Body of Christ is, but it is also my way of saying “thanks”.  I have a confession:  I am absolutely abysmal at writing Thank-You cards.  I just don’t do them.  Ever.  But, please know that every form of help that has been offered during this trial has been very gratefully received.  And I pray for all of your intentions every time I pass that poster board. 

Monday, June 11, 2012

Two Tumultuous Weeks

It all started on a Friday afternoon.  The clinic had been trying to reach us and had left two messages, but I was out and didn’t check the voicemail when I got home.  At 6:20pm we got another call, and this time we were all home and Adam answered.  It was someone from the clinic… we never found out exactly who.  A doctor’s assistant.  She explained that Adam’s chloride levels had been steadily decreasing over the past week, and they had reached quite a low level according to that day’s bloodwork.   She had already consulted with the oncologist at the clinic, and they agreed that Adam should go off treatment and receive some IV fluids to try to correct the imbalance.  It being Friday after hours, we would really have no choice but to go to the ER.  The woman explained that she was sorry we needed to do this, but it was important that we get the fluids as soon as possible, and have another bloodtest done to ensure his levels were back up.  We arranged for the kids to spend the night at a friend’s house (their first sleepover at a non-family member!) and we went.  We got to the ER around 9:00pm, and you know how those things go.  We finally got into the back after over an hour’s wait, and then it took ages to actually get someone to hook up the IV bag.  The drip lasted over an hour.  Then we had to wait for bloodwork.  Adam meanwhile missed his 8:00pm infusion, then his 12:00am infusion.  We were both beyond exhausted.  Finally we got the news that his chloride was back up and we could go.  We got home, hooked Adam back up to his pump, and crawled into bed around 3:30am.  It was so hard setting that alarm for 6:00am!  I did actually get up, and managed to disconnect Adam, flush his catheter, prep his bags, program the pump, and reconnect whilst in a state of zombified bleariness.  I collapsed back into bed, and we both slept until 11:00am.  My first lie-in in four months!!  The rest of Saturday was a blur.  It was like the worst jet-lag ever.  We spoke to our chiropractor, who suggested that perhaps the flagging chloride levels were due to over-hydration, and we agreed.  So, the rest of the weekend we were going to make sure Adam didn’t drink too much water, because we were NOT going back to the emergency room again.  Sunday was really disorganized and chaotic as we both tried to function.  Just one late night was enough to really mess the both of us up for two days.  Monday we finally seemed to get back to normal, but Adam was starting to feel a bit thirsty.  In an attempt to quench his thirst without guzzling water, he spent the evening watching bottled water advertisements on YouTube.  Now, keep in mind he was still drinking obscene amounts of water.  We just cut back a little (which we thought was the right thing to do), and he was taking in 10 liters a day instead of his previous 12.  What made things really frustrating was the stupid three-day holiday weekend.  Adam really needed to have bloodwork done on Monday, but being Memorial Day, everything was closed.  By the time we got bloodwork on Tuesday, things were not good.  We got a call from the clinic (our normal nurse, thank God), and she told us that Adam’s sodium levels were sky-high.  Adam was feeling really sluggish, which was a telltale sign.  She explained that if we didn’t get Adam off his medication immediately, he could slip into a coma.  Holy cow.  When she asked what happened, I shared the story of our nightmarish weekend.  She told me that if Dr. Barbara had been in the office on Friday, she would NEVER have told Adam to go the ER for something as insignificant as low chloride levels.  “Low chloride we can live with,” she said, “But not high sodium.”  So Adam was advised to get back up to 12 liters of water a day because that had been working so well for him.  The bad news was that he would have to come off his medication for a full 24 hours!  So he had already missed 2 infusions on the Friday night, and now on Tuesday we would be missing 6 more.  I was so frustrated.  However, there was a silver lining.  NOT having to change bags for 24 hours was like a luxury vacation.  Adam slept really well, and only woke up once or twice to pee.  And he wasn’t plugged into the wall, so he could actually use the toilet!  Hurray!  We both caught up on much-needed sleep, and enjoyed the mini-break, trying not to think about how the lack of medication might be affecting his cancer recovery.

The rest of the week went by relatively quick.  Just the usual intensely-scheduled daily routine.  Now with three bag changes a day, things are so tightly packed in.  I don’t sit down…. ever.  For some reason (call it PMS) the weekend was a bit difficult.  I just felt a bit overwhelmed and frustrated with the daily pace around here, but I’m powerless to do anything about it.  It is what it is.  Sunday I get a call from my sister.  She has been graciously picking up our dirty laundry on Wednesday mornings, washing-drying-and-folding, then returning them to me either the same day or the following morning.  Well, her business has really picked up, and she’s struggling to fit in her own family’s laundry let alone ours.  So regretfully, she has to stop.  Crap.  Monday was extremely hectic as I had two meetings at the school starting at 8:30am, then grocery shopping and a ton of errands.  I was exhausted by the afternoon.  We have a friend who dutifully comes over on Monday and Friday nights to wash the dishes, clean the kitchen, and mop the floors.  I couldn’t live without her, and I thank God for her every time she comes over.  However, due to her own medical crisis, she was unable to come on Monday night.  Our “hell hour” is usually from around 3:00pm-4:00pm, which is when Finlay wakes up from his nap and screams like he’s on fire for an eternity.  The older boys want snacks, Adam needs a bag change and his protein shake, and I’m trying to start dinner (we eat early around here).  I really struggled to keep it all together that day, but after the boys were bathed and in bed I managed to survive until the end of my day, which didn’t come until after way past 11:00 since I had a kitchen to clean.  Then Tuesday hit like a ton of bricks.  In the morning, the mortgage company called offering us a refinance.  It was a great deal, and I was happy to jump on it.  Too bad it took 4 HOURS of my day to deal with the phone calls, emails, account set-ups, printing problems, scanner failures, and phone messages to make it happen.  The daily “hell hour” nearly killed me, and I ended up a shaking sobbing mess on the floor.  In all the hubbub, I hooked Adam up for his afternoon/evening infusions, but never switched on the pump.  At 10:30pm I go to disconnect him, and discover a totally full medicine bag in his Camelback.  He missed two infusions.  I lost it.  I was up until the wee hours of the morning feeling like I accidentally killed my husband, and sobbing uncontrollably.

Wednesday morning was a blood run, but I didn’t realize that I hadn’t scheduled a runner until I woke up that morning.  Crap.  Now I had to throw the kids in the car and go there myself, but the consolation prize was a morning playdate at one of my favorite people’s house.  I relaxed for a couple of hours and enjoyed myself for the first time in a long time.  But, Wednesday afternoon was hell as usual and I really struggled to make it through with my sanity intact.  Thankfully, three days of awfulness made way for an uneventful remainder of the week, and I’m able to report on the craziness from the comfort of our home, and not under surveillance at a psychiatric institution.  Throughout all of this, Adam has remained and always will be a beacon of positivity.  I hate that he’s the one with the cancer, but he also has to scrape his caregiving wife up off the floor at least once a day.  He feels great on the maximum dose, and continues to run his business and care as much as he can for the kids.  The next MRI is scheduled for the 21st of this month, and we are looking forward to getting it over and done with.  No expectations this time.  But, I think mentally I could really use a positive result!