Remission

Today we saw Dr. Stella to review results from last Friday’s CT scan and talk about the plan of care for the next phase of treatment.

The bottom line is this…The doctor is calling this a “remission”.

1. Dr. Stella says that the CT scan looks “excellent” and that Bill does not need any more chemo.

2. Surgery at this time would not impact the plan of care to the degree that it would be beneficial. “Time will tell us the same thing that surgery would so we’re just going to wait and see what happens next”. I’m quoting the doctor here. So no surgery now.

3. His chemo port is being left in place for now.

4. Next is a repeat CT scan in 3 months to see what is happening.

So that’s it. We are all ecstatic that Bill is going to get a break from the constant trips to the hospital and visits to the doctor. Though it is not what you’d call a cure and it is possible that we will be doing all of this again, it is the best news we could have gotten right now. Knowing that this cancer is “chemo-sensitive” is HUGE…

We are looking forward now…to holidays without expecting a hospital admission…to Bill being able to work enough that he feels productive…to me being able to plan some hours in Labor and Delivery without my co-workers viewing my name on the schedule with skepticism…

So is it a “miracle”? I don’t know, but it’s a step in that direction. Part of me wants MORE. More information. More details. You know…”Are we going to be doing this again? What will we be doing next time? Is the chemo going to work if we do it again?” And we are still guessing about just how extensive things were and if/when the cancer comes back, where it will come back. But what I’m really asking are questions that maybe we aren’t supposed to know the answers to…

We already know that at any given moment life can change for the better or for the worse and we have to live each day as if it was our last. Striving for hope, savoring moments of joy and wonder, saying “yes” whenever possible, recognizing God’s goodness in the everyday world/people around us.

We DO believe in miracles and know that there are so many people out there praying and fasting. There’s no way to express how deeply grateful we are for all of you who are supporting us in this way. We will continue to keep you posted and hope that maybe in our 3 months off we can somehow repay the kindness and love that you have all shown to us.

God Bless and Love,

Lara

No News, just an update

Hi everyone,

Bill had his (last?) chemo treatment last week without any problems aside from a weekend in bed. He is back to work now and feeling pretty good, eating and sleeping well and ready for whatever comes next. Right now the only thing planned is a CT scan on the 25th and an appointment with the oncologist a few days later. Still no appointment with Vita to discuss the surgery that we think (and hope) will be coming in October. So as usual we have no answers and no specific idea when we will get some answers. This is way this game is played. If I sound a little jaded…well…yeah that’s about right. I know that the answers will come in time and that sometimes the answers that you get later are better than the ones you might get now. But I’m a NOW kind of girl…Bill is the patient one…

My next update will probably be sometime around the 30th of September and hopefully I will have some ANSWERS!

In the meantime the kids are all loving school! Really loving school. And I’m loving that they are IN school. I have some hours scheduled working for Sharon in the Multidisciplinary Care Clinic (lung cancer clinic)…several days working 2-4 hours at a time which I’m still hoping will turn into something more permanent eventually.

We continue to be handling all of this because of the love and support of family and friends near and far. All of your prayers, words of support and caring, ways that you make us smile mean so very much and we are so thankful.

Until next time
God Bless and Love,

Lara

I must add on a special prayer request for a friend of mine. Her name is Pam and her son Nick (he is 16) is battling brain cancer. This year he spent 6 months straight in the hospital, came home for 2 weeks and went right back in. Please pray for healing, courage, strength and stamina. Thanks everybody.

” Mom, this just keeps on sucking”

This was Sam on Monday night when Bill and I headed back to the emergency room. With a high temperature and a (very) low blood pressure he got admitted to ICU. The procedure-hungry residents REALLY wanted to put in a central line, but the fear of very young looking guys in white coats coming at his jugular with sharp objects brought his pressure back up to an acceptable level and he avoided getting yet another scar…

Turns out he is septic with a nasty bacterial infection called “c-diff”, which calls for a few days of IV antibiotics, lots of fluids and an extremely thorough bleaching of our house. It will also delay chemo treatment #4, originally scheduled for next week. Good and Bad. Good in that he won’t be getting chemo on our anniversary, bad in that he won’t make it to The Saline Fair, which is always a highlight of the end of summer. He is much better than last night. Getting moved out of ICU as soon as the bed on the regular floor is ready and probably home on Thursday.

The kids had seriously great plans for this weekend which had to be canceled-hence Sam’s astute observation about “life” noted in the title.

It’s hard to keep telling the kids that it will get better because they don’t really believe me anymore. There are no easy answers, except to keep counting our blessings…and the blessings NEVER stop coming. Like the unexpected meals, rides, play dates, notes, phone calls, invitations, hugs, prayers and even money. (Yeah somebody sent a card with money and no signature or return address). There’s all kinds of love in all kinds of unexpected places. And we try to laugh…a lot…and we do. God is still good and the only thing that never ever changes. This is what we hold onto.

Many thanks for the continued prayers, love and friendship…and all of that other stuff that makes life so much better in the midst of it “sucking”.

God Bless and Love,

Lara

The original “Community Organizer”

Hi everybody,

As you will be able to tell by the simple words that I, Bill, have hijacked the blog today. Rest assured that Lara will be editing, but the random, disjointed thoughts will be mine. Be warned, I am making up for lost time and it may be a little long but stay with it.

I’m here at the clinic getting chemotherapy today and with the time available, I thought that I would share what I felt was one of those “God moments” I had last week.

Pastor Ken gave a message two Sundays ago about community. He was in the middle of the series titled “What If?” The series is focused on what if today’s Christians acted and worshiped like the first Christians. That week’s message focused on how the early Christians worshiped with others. How they met with each other daily and shared all that they had (Act 2:42-47). How it was within this community that the numbers of followers increased daily. His main point was that Christians need to be in community with others in the Word. It is within these small groups that real growth will occur. He talked about how Sundays were for great for getting information and helping us to move towards our next steps in our growth in Christ but that those next steps were taken with other believers with whom we study the bible and also really know us in our daily lives, our triumphs and our failures. As I wrote to him on Monday about how much his message moved me and I felt like the Holy Spirit was telling me that I needed to be in community with others.

I was also thinking about what community means. For many of us community, means where we live. Lara and I feel very lucky to live in the community of Saline. We have wonderful friends here and I am grateful for all the love support and prayers that we have received for all these years.

But community really means so much more. As in community of believers around the world. During that same week, a missionary from Bangladesh was visiting our church. Keystone helps to support Kushi in his work training pastors in Bangladesh and increasing the number of believers. He faces hardships that we cannot imagine. Freedom of religion is not respected in his country like it is here and many of the followers of Christ and the teachers of the Word face persecution for their faith, yet he continues to press on in the work that he was called to do. He was grateful to Keystone for their support and especially the prayers for him, his family and his work from half way around the world.

Over the past 3+ years many people in God’s community have told us that they are praying for Lara and I and our family. Those prayers come from all over. Indiana, New York, Michigan, Ohio, North Carolina and many other places. Even Citrus Springs, Florida. Many of you are probably wondering where Citrus Springs, Florida is. Its about 90 miles north of Tampa, a few miles from the Gulf of Mexico. The reason that I mention Citrus Springs is that there is a church there named Lighthouse Baptist Church. I didn’t know that I knew anyone going to that specific church. As it happens, I didn’t even know I knew anyone in Citrus Springs. Maybe if I had, I would have spent some weekends there defrosting from the midwest winters. As it turns out, some very good friends of Larry and Nancy’s, Jerry and Marlene Rubino, go to this church. They have told Larry and Nancy many times that they and their church family were praying for us and our family. Those payers were really brought home to us last week. I received from the wonderful believers at Lighthouse Baptist Church, a beautiful prayer quilt made for me. It even has a golf motif. The quilt hung in their church and people were as to say a prayer for me and tie a knot on the quilt. When they were done, they sent the quilt to Larry and Nancy who gave it to me. Their prayer quilting ministry is very similar to the one at Keystone, which had made beautiful ones for both Lara and I during our last treatments. Like the time I we received the quilts from Keystone, I was moved beyond words as this show of God’s love, maybe even more so. It is hard for me to believe that so many people would put that kind of effort and love into something for someone they had never met. It is truly a testament to God’s reach.

So why I am going on with these ramblings? Many of us, myself especially, have put tried to put God in a box. We have our “God” life in this box over here and the rest of our life in this other box over there. But God can’t be put in a box. He made the universe which last I knew was larger than any box I know of. The box we try to put God in just can’t be big enough. No matter how hard we try to keep God in our little box, His reach extends well beyond our lives. He touches our lives through the community of believers that we don’t even know. Whether it is a missionary in Bangladesh who is thankful for our our prayers and support so that he can reach others for Jesus in his country or friends of friends of family in Citrus Springs, Florida praying for us and our struggles. These believers in our hometown of Saline, Bangladesh, Florida, Michigan, Indiana, Ohio, New York, North Carolina, etc. are really putting into action Phillipians 2:1-4 (especially 4) “If you have any encouragement from being united with Christ, if any comfort from his love, if fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like minded, having the same love, being one in the spirit and purpose. Do nothing our of selfish ambition or vain conceit, but in humility consider others better than yourselves. Each of you should look not only to your own interests, but also to the interests of others.”

This follows Jesus’ instructions from John 17:20-23 “My prayer is not for them alone (his disciples). I pray also for those who will believe in me through their message, that all of them may be one. Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me. I have given them the glory that you gave me, that they may be one as we are one, I in them and you in me. May they be brought to complete unity to let the world know that you sent me and have loved them even as you loved me.”

So Jesus prayed for all of us before we were even born. And in Paul’s letter to the Phillipians he instructs them to live a life worthy of the gospel of Jesus Christ. He instructs them to be like Christ and consider the interests of others.

I believe that the others Paul referred to was just not those in our community (ie. Saline) but in the greater community of believers around the world. These are the people that are making an impact in Lara’s and my lives. From Michigan to Citrus Springs, Florida. These prayers for us reflect Paul’s instructions to follow Jesus’ example and are true examples of God’s love for His people.

We thank you all for these prayers. They fuel our hope and cause or faith to strengthen. These are the best gifts we can possibly receive.

Thank you all so very much and may God continue to bless your lives.

love,
Bill

Coming out of the closet

Well I’ve been a closet catholic for most of my life, known about it for about 10 years and I’m coming out now. Some of you will be shocked, some will be ecstatic (dad) and some will just be confused. Yeah I’m going to talk to a priest. Sign me up…and I decided this before I got my great news.

I got my scan results early. I AM FINE!! Good for at least another 6-12 months. What an incredible relief. The thought of both of us being sick was more than i could bear. God let me off the hook this time. Was it the prayers? Was it laying myself on the altar and pleading? Was it because Bill and the kids need me too much right now? I know I don’t deserve the reprieve but I’ll take it and be thankful. Thankful that God is merciful, thankful for having so many amazing people in our lives who have prayed for us and pour out love on us every day, thankful to have more time to give some of the love back.

Now back to Bill. However you have prayed for me, he needs it now.

God Bless and Love

…and Thank You,

Lara

dignity is overrated

This could be a long blog. I’ve got 2 hours in a waiting room. Uh oh for you.

Bill is doing ok. Treatment #2 had to be delayed for a week due to low blood counts, which really made him mad, but things got started again last Wednesday. So far he’s not feeling as good as he did after the first treatment, no yard work this time, but nothing severe. Just some pretty major fatigue and a little upset stomach. The plan is unchanged. A CT scan next Monday, 2 more rounds of chemo in August and September followed by surgery to “look around” and make plans for whatever comes next.

The kids are good. All very busy with friends. Sam at diving camp at U of M, Mary finally finishing up 10th grade (yeah I know, lazy slacking homeschool mom) and Jeff enjoying the spoils of a fantastic 10th birthday party.

Blogging about Bill’s illness has been a little weird. When I started doing this I was the sick one, so sharing details, both physical and spiritual, was no big deal. Writing about someone else’s experience is pretty impossible, but I can still talk about my stuff.

I have scans this week. CT today and PET on Wednesday. We won’t have any results until next Tuesday. It’s just my regular 6 month check up but still scary as hell. We already know about how lightening strikes the same place twice. I prepared for my tests in a pretty undignified way.

I decided it was time to go to mass again. 7am. St. Thomas’ Church in Ann Arbor. To say it felt good to be back would be a huge understatement. I loved the wood pews, the smell, the music, kneeling for prayers and especially the way the host sticks to the roof of your mouth. After the service I stayed in the pew for a while- thinking about doing the thing I had half joked about for a couple of weeks. I was waiting for the church to be empty- you know for a private moment in a public place…sure…but a lot of people weren’t leaving. Oh Well.

I walked up to the altar, went behind the big table (probably breaking all kinds of rules) and I got down, face down at the foot of the cross…seriously on my stomach…and I BEGGED for my life. The whole world just vanished at that moment. Every sin, every issue, every other problem and prayer request was GONE. It was just me and Jesus for about 5 minutes.

When I got back up there were 2 little puddles where my face had been and I had nothing to clean it up with. It would have been ridiculously cool if my hair was long enough to get the job done, but I just kind of wiped it up with my hands so it wouldn’t leave marks on the wood. I can’t imagine what the 20 or so people still sitting in the church must have thought.

If it takes cancer and being hysterically afraid to get me to leave my tears on an altar, practicing my faith where I am most comfortable and have an extraordinary 5 minutes with God then so be it.

…and I’m not scared anymore.

Unsolicited advice from me…
1. Dignity is overrated
2. Embrace the grand gesture
3. Be un-apologetically IN the moments of life

Please continue to keep Bill and all of us in your prayers. Big thanks for all of the love.

God Bless and Love,

Lara

He’s got a FEVER and the only prescription…is more cowbell!

So the hair is out, the port is in…but so is he…in the hospital that is.

After the last chemo Bill had a couple of good days, followed by several lousy days. Last Wednesday morning he got his port placed in his chest, we went home and about 3 hours later he spiked a temp. 103 degrees. All of his blood counts are severely low (neutrofil count was 0.1 and white cell count was 1.2) so he’s here at least for the weekend. The next 3 days of chemo are scheduled to start this Wednesday, but that will have to be put off and I don’t know what that means long term. More variables, more questions, more unknowns.

Bill said today “if the chemo is kicking my ass maybe it’s kicking the cancers ass too”. His spirits are pretty good all things considered.

The kids have been gone for a few weeks and are FINALLY coming home!! I’m officially “flex” at the hospital now which means that I work when I want to work. So for the next few weeks I’m hoping to spend a lot of time making life as wonderful as possible. I think I’m going to have to start cooking…ok if I’m trying to make everyone’s life better maybe I shouldn’t start cooking, unless for comic relief.

Many of you have asked how you can help and the only way I can think of right now is to suggest good movies. We spend hours and hours with nothing to do thus we watch a lot of movies but run out of good ideas. So movie suggestions (probably best via facebook) are welcome. Stay tuned because I can guarantee that I’ll be taking greater advantage of the many offers of help…soon. Be careful what you say (“is there ANYTHING I can do?”) because you might end up with my beagle.

Many thanks to all of you for your continued prayers, love and support. We couldn’t get through all of this without you.

God Bless and Love,

Lara

People on drugs shouldn’t drive shopping carts

I can’t stand writing this kind of news.

We saw Dr. Stella last Tuesday to talk about treatment plans and prognosis and he was not exactly optimistic.  He says that the cancer has spread through Bill’s chest and that it cannot be cured.  The best we can hope for is that he can buy Bill time.  It could be LOTS of time…but there is no way to treat with chemo and then surgically remove any single large tumor.  He kept stressing that the situation was very different from last time.  The plan is to do 4 rounds of chemo, each round 3 weeks apart and then have the surgeon go in and take a look around to see how well this chemo has worked.  If it has significantly reduced what is there then Bill will get more of the same chemo.  If not then he’s not sure but he gave us paperwork for 2 different clinical trials (Experimental treatments). One in Bethesda MD and one in Indianapolis IN.  The doctor did say a few things that sounded kind of positive, but it came across as  an afterthought…like he was sort of reaching to think of something positive to say.  Thymoma is so rare that medical science just doesn’t have very much information or research data to fall back on.

So Bill had chemo this past week and spent most of Wednesday, Thursday and Friday at the hospital.  His response so far has been remarkable.  No puking, no fatigue, no weakness and yesterday (Saturday) he did 3 hours of yard work.  But the drugs he takes to keep  from getting sick are making him kind of interesting to take out in public.

After chemo on Thursday we stopped at Sam’s club before going home.  Letting him drive the cart didn’t seem like it would be a problem.  He ran into and knocked over a HUGE trash can in this big open space in the middle of the store…which wouldn’t have been a big deal by itself…but he follows up with a VERY loud and VERY obnoxious Bill Murray impersonation!  SO TOTALLY EMBARRASSING!!  But funny.

We are surviving on humor, staying busy, the support of friends near and far and serious prayers.  Bill finally decided to get on facebook, which has been a good distraction.  All of you who already are on facebook know what the fb honeymoon is like…so he’s on that high right now.  Perfect timing.  I’m listening to a lot of Jennifer Knapp and praying my heretics rosary.  (see below).  The kids are all up north at the moment.  Sam and my dad built a potato launcher (?powered by a can of aquanet hairspray as a blowtorch?) and both boys have been making home made ice cream.  Mary is busy getting ready to go to DC with a group of kids from church.  Bill and I will be joining the kids at the cottage for a few days next week for a little time hanging out on the dock, on the boat and around the campfire.

Not sure when I will blog again.  We won’t really know anything more until after the 4 chemo rounds and the surgery to “look around”.  Until then…Thank you so much to all of you for your loving words of support and encouragement, well wishes and prayers.  Every single gesture is something that makes us smile and feel good when we should be crumbling.

“but those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary,  thy will walk and not be faint”.    Isaiah 40:31

God Bless and Love,

Lara

My Heretics Rosary

When I was a kid growing up episcopalian I was blessed to have a great priest as a teacher and family friend who taught us to pray the Rosary.  Interestingly enough, he later left the episcopal church and became a Roman Catholic Priest.  That and the fact that I went to catholic high school (and various other theological beliefs that I have) is why I often refer to myself as a “closet catholic”…and I know my friend pastor Ken won’t be distraught if at “the end” I call for last rights.  I digress.

In 2000 my parents made a trip to the Holy Land and brought me back a Rosary made of olive wood.  I had a book about how to pray the rosary and sort of gave it a try but it didn’t last and it ended up in a drawer in my jewelery box.  Years later I was leading a bible study and fervently trying…but failing…to be serious about prayer time.  Always distracted by stupid things (the buzzer on the dryer), falling asleep or just allowing myself to indulge in an inordinate number of “gimmie” prayers, I had an idea to use the Rosary as a tool for focused prayer and meditation.

So here’s how I do it.  I start at the cross with prayers of praise. Working my way up  at each bead I give God praise in some way…sometimes it’s just me telling God how I know of his greatness, sometimes it’s a line from a hymn or whatever.  Moving on to the next series of beads I confess a sin for each bead.  On the next series I say thank you for something specific at each bead.   The next series of beads I make petitions (God please….) for other people or situations (say a sick friend or world peace) and on the next series I make petitions for myself or my own family. A “God gimme” for each bead.  For the remainder of the beads I usually meditate on Christ, his love for me and the gift of Life that he has given me through his death and resurrection.  Sometimes it’s a very repetitve prayer like  “more of you, less of me”…sometimes I pray the “Hail Mary”…sometimes I meditate on the words of a song.

I know I’m not really a heretic but I love being a rebel.  Praying this way has been so powerful for me.  I don’t do it nearly as often as I should.  Usually when life has become some kind of suckfest , when I’m faced with a difficult decision or when someone I know is in desperate shape I go looking for it.  It keeps me focused on what I’m doing and helps keep my mind from wandering.  When people see it  in my hands they know what I’m doing and sometimes when I’m not thinking about praying AT ALL I look over at my nightstand (or in my purse, or in the drawer) and it’s kind of like God is calling me.  Very cool.

New Post

Bill’s biopsy results are in and it is more cancer.  This time the doctor doesn’t think that it is confined to a single area.  What he said is “I think the pleural space (chest) is contaminated”.  Really this is about as bad as the news could have been.

We still aren’t sure exactly what will come next.  Chemo for sure but he may still have surgery first to determine the extent of disease.  Chemo will be 3-4 treatments, about a month or so apart.  Dr. Stella said something about each treatment taking 3 days.  Have not heard of this before…we meet with Dr.’s again on Tuesday for more specifics.

Please keep praying for all of us.  We are just spent…tapped out…have reached our limit and things haven’t even gotten started yet.  When we went through this last time I was able to pretty much stop working, a luxury we do not have this time, which means that not only am I not home as often as I need to be I’m also exhausted much of the time.  I am still holding out for the lung clinic.  The kids are near the breaking point as well.  Scared, angry and having to grow up way too fast ,with parents who aren’t always able to anticipate and meet their needs.  Bill is making jokes about having to lose his hair after having just gotten highlights (yes i made him do this…it looks pretty good), trying to let all of us know that he’s ok, but I know he’s scared.

We all know that we will be taken care of.  We all know that in the end things will be ok.  We all know that we are not alone.

In the meantime it is one foot in front of the other…Just keep swimming…Just keep looking for miracles in the beautiful things that happen to us every day,thanking God for  the people we are blessed to know and the many ways that we are rich beyond what we could ever deserve.

Many thanks for your continued prayers, support and friendship.

God Bless and Love,

Lara

Happy freaking Birthday!!!!

…sorry if my (almost) cursing offends…it could have been worse…

Bill’s biopsy is scheduled for Monday June 15th.  His Birthday.  The procedure that they will do if the biopsy is negative is called a  VATS,  which stands for video assisted thoracic surgery.  I’ve always thought that Vita (my surgeon) wanted to get her hands on him.  Now I know this is true!

Bill is doing ok…still symptomatic and still recovering from his golfing binge.  I think anything that he might have done to himself over the weekend was worth it.  He had a great time.

Will update when there’s anything to pass on or if I feel a need to wax poetic. I’ve got something about miracles brewing in my head.  Many thanks for all of the love, words of support and continued prayers.

God Bless and Love,

Lara