whoop (here it is)

Wow! Lately I’ve been hearing a lot about my lack of blog. I’m sorry to have been so slow to communicate. Life has been back to NORMAL. (translation CRAZY!!)

First of all, the best news… I had 3 scans this week (PET,CAT and MRI) and have been officially declared cancer free!! I will have more scans in September and if those are clear I will go on a six month schedule of tests. I was extremely anxious about how these tests were going to come out. I didn’t THINK I was all that worried, but I just about had a panic attack just before the doctor came in to give me the results. When he came in the room I don’t think I even breathed until he gave me the good news.

To catch everybody up on the past few months…

At the end of March Bill and I and the kids went to Atlantis in the Bahamas for the BEST VACATION EVER!! It was truly a little bit of heaven and a really special time for us. It was so good to be feeling good and enjoying each other with no responsibilities or worries.

On March 3rd I went back to work. This was both a thrill and an enormous challenge. Being back on L & D (Labor & Delivery) was such a joy (big shout out to my awesome coworkers). What a blessing it is to have a job and to love it so much. Once I’m there it is great, but walking out the door and away from life at home is so hard. I’m working 3-8hour shifts each week (3-11) which doesn’t sound like much but it’s been a big adjustment for all of us. It is getting easier with each passing week and I’m learning that there are limits to what I can do at home combined with the physical demands at work.

The kids are all doing great. Busy with skating (Mary), diving (Sam) and baseball (Jeffrey) and gearing up for summer.

Bill is doing well too. Still holding steady with his weight. No losses or gains. He continues to have great energy and a strong immune system. Bill and Mary are preparing now for the “Wish a Mile” 300 mile bike ride to raise money for the Make A Wish Foundation. (Watch your mail boxes for info on how to sponsor them!)

When I was sick I hadn’t really given much thought to what life would be like once treatment was completely over. I figured I would be back to work, and that I would probably have some new challenges. ( I do miss my lung a lot). I didn’t expect to have such major psychological changes.

The whole cancer experience has changed the way I think about so many things like how I spend my time -(for example,  ”If I’ve been spared an early death then how am I supposed to spend all of those bonus years?” or “If I only have a little time left then how am I supposed to spend such preciously few moments?”). I sometimes am kind of spastic about each little cough or pain. Bill and I have both found ourselves changed in so many ways that we could (and might someday) write a book.

There are kids to tuck in so I have to wrap this up, but before signing off I want to share something written by Teresa of Avila. These are words that my heart asks when my heart is in the right place.

Thine am I, I was born for Thee,

What wouldst Thou, Master, make of me?

Give me death or give me life

Give health or give infirmity

Give honor or give obloquy

Give peace profound or daily strife,

Weakness or strength add to my life;

Yes, Lord, my answer still shall be

What wilt Thou, Master, have of me?

Stay tuned for a “must have for getting through cancer” list from both Bill and me. Love, Prayer and Support top that list, and we are so grateful for all of you out there who have done so much for us!!

God Bless and Love,

Lara xoxo

wigged out (just the photo-not me)

Before I say anything else, I must apologize for taking sooooo long to blog!

I guess I’ll just start where I left off. When I last posted I was preparing to get off of all of my drugs. (Ativan and Oxycodone).

I’m off of everything. I could write forever about the ugliness of the whole detox experience, but I won’t. I’ll just say that it was worse than chemo, worse than having radiation burns in my esophagus and worse than getting organs, bones and muscles taken from my body. Drug dependence is a kind of physical and mental bondage that, when conquered leaves you feeling more exhausted than triumphant. There’s also a huge feeling of guilt for what my family has had to endure as a result, though I know that they would never want me to feel guilty. Writing this has brought on unexpected tears for what I’m not sure. I know I will never be the same.

I had a little setback in December. On the 16th I injured my arm where my port was and developed a 3-4 inch blood clot from the port to my armpit. I got to stay at the hospital for a few days and am back on Lovonox until mid March but as far as I’m concerned it’s just a blip.

I had a cat scan in early December (which looked good) and am scheduled for another on Valentines Day. Bill and I will be having his and hers scans and an appointment with Dr. Ruckdeschel, followed by a romantic dinner somewhere downtown. wooo hoo!

Bill is doing well. Still trying really hard to gain weight despite the fact that food tastes bad. His energy level and spirits are great. He’s been in Japan for almost 2 weeks and was able to go skiing at Nagano for a little weekend fun. I can’t wait to see the pictures.

The kids are doing great. Keeping us busy with skating, diving and piano (Sam) and basketball (Jeff). Today is Sams birthday. I can’t believe he is really 13!!!!

At home we’re in sort of a re-entry phase. I’m back to being mom-back to trying to “do my job”. I recently had to be reminded to give enough hugs and positive attention to balance my newfound commitment to teach responsibility and enforce stuff that just wasn’t a priority when we were living in survival mode. oy! Reentry is bumpy.

Physically I think I’m where I should be. Pain wise I’m doing well. I was even feeling well enough to shovel snow last week (and then spent a day in the ER evaluating chest pain and shortness of breath!!) I’m learning my limits. I’t so tempting to want to start at full throttle. I so badly want to be normal again.

On another note, Bill and I have sent in a request to get all of our scars tattoo’d on TV. Our bodies have been so marked up- why not mark them up with something beautiful or something that sybolizes the ways that our lives have been changed for the better?

I met with my nurse manager in Labor and Delivery this week to talk about going back to work. It felt so good to be on the unit. For just a second I looked at the board (this is how the charge nurse and docs keep up with what is going on in each room with each patient) and felt such a strong feeling of wanting to be back in action and at the bedside. I’m not sure exactly when I’m going back yet or what hours I’ll be working, but hopefully it won’t be long. Although I’ll always work in L and D in some capacity, I definately see some detox or addictions recovery type nursing in my future. Not for a while, but someday.

Earlier this week I was looking at some of my medical records that I have to take to Dr. Ruckdeschel and had a cool moment. I was reading all of this stuff about my tumor that was so negative and even on paper sounded gloomy and it must have seemed to them that I was a gonner. Then I got to the pathology report that addressed the specimens taken from my chest during surgery and it was just amazing. The bones were clear, the chest wall was clear, the surgical margins were clear, and one after the other, listed one area at a time the lymph nodes were all clear. It is miraculous to me, and there has to be some reason that I’m supposed to be around for a while.

Bill and I have learned so so much, we could go on for hours, but as we’re emerging from what feels like a shadow or a fog there’s a few things that come to mind as standouts.
1) God has made his presence known in all of the ugly and no matter how hard life gets, I will never doubt his love for me and that he will always be my source of comfort and peace until the day he brings me home and forever thereafter.
2) Jesus cares for us and meets our needs in part with the hands and hearts of those who love and serve him. It is my great hope and prayer that when the need arises and I’m needed to answer the cries of others that I will hear and respond.
3) Every day is precious. Part of the whole re-entry thing is trying to make choices about how life is going to be now that we have this new found appreciation for what each day means.

I will be writing again very soon to pass on information about some other stuff. Like, a list of things (books, snacks etc.) that got us through, and a tool that I have used for prayer.

Continues thanks for all of your love, support and prayers.

God Bless and Love,

Lara xoxo

Harder than cancer (it’s a little “c” now)

OK, Well then. Last I blogged I was due to visit the pain clinic. I did and we (the physicians assistant, Eva) decided that starting the Monday after Thanksgiving (which was very nice, hope yours was too) I would cut my Oxycodone back by 1/4 of a pill every 3 days. NO PROBLEM. What’s a lousy quarter of a pill? If I shake the bottle it turns to dust in about a minute.

It was bad. At first (Monday night) I thought I was just wiped out, had overdone it over the weekend. Tuesday night I could hardly keep my head up off of the dinner table, was crying, not able to lay still, hot and cold flashes, nauseated, having stomach pains… the whole drug withdrawal thing. I wish I could describe what this really feels like, how it can be worse than recovering from a chest wall resection or chemo, but it really is. It’s kind of a feeling that you’re going insane and want to escape your own body. Plus the frustration of having felt good for a little while and having been able to enjoy life and take care of some of your own responsibilities for a little while.

I was, to be honest, MAD. (the Long Island, truck driving sailor in me is really holding back here-Mad was not the first word that came to mind). ONE QUARTER OF A PILL! I tried to tell myself it was all in my head, mind over matter etc. No. This wasn’t in my head.

So Thursday I went back to the pain clinic and the Angel Eva and I have a new plan.

First I have to get off of my Ativan. (This is an anti nausea drug that I took for chemo but also to combat the nausea caused by the narcotics.) I’ve been on this since my surgery and it can also be very physically addicting. Goodie. Fortunately Eva is putting me on phenobarb, which will replace the ativan, treat the withdrawal, and be MUCH easier to get off of when the time comes. So far it has been 3 and a half hours since I skipped my ativan and started the phenobarb and so far I feel fine. I was very nervous about this. So far, so good.

On December 9th (a Sunday) I take my last Oxycodone at 6pm and go into the pain clinic the next morning to start a drug called Suboxone. I think it is officially still in clinical trials, but it is supposed to treat ALL of the withdrawal symptoms, including the return of pain. Eva said I can stay on this for a long time if needed to treat the pain (living forever with chronic pain is one of my biggest fears) and it’s not hard to stop taking. Sounds too good to be true, which is why I resisted so much for so long. I am hopeful.

Until the 9th I hold steady with my current dose of Oxycodone. (I recently heard this called “hillbilly heroin”. Bill has always said I had some hillbilly in me.)

I have my CT scan on December 3rd and have no fear about this whatsoever. All that is left are some loose ends like getting my port removed and deciding what to do about my anticoagulants. I will see Dr. Ruckdeshel (along with Bill) on Valentines Day for another follow up.

Bill had his CT and it shows pretty much the same as the last one. Some shadow in the area that was radiated. He is scheduled for a PET scan on Valentines Day just to be sure, but Dr. Ruckdeshel seems confident that all is well. Food still tastes bad and he hasn’t gained any weight, though he is trying harder lately to get more calories in. He got the results of his enzyme study and nutritional analysis last night and is going to be starting some supplements and resuming the acupuncture. Please keep praying for him.

The way that God comes to us in times of hurting is still a wonder to me.

One of my favorite songs refers to him as the “pasture maker” and that has been so true for me. Prayer is the only relief and the only way I can relieve those nasty symptoms, but I really have to get alone and get quiet and “be” with him. I guess it’s what is meant when the Bible refers to meditation. What is so amazing is that the only way I experience this kind of intense closeness to Jesus is when I am most miserable. He has never let me down. There is a kind of relief that takes over and gets me through. It lets me know that there isn’t anything he won’t carry me through. What an incredible gift it is to KNOW this, deep in your bones as truth.

He makes me lie down in green pastures, he leads me beside still waters. Psalm 23:2

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. Isaiah 43:2

But as for me, I will always have hope; I will praise you more and more. My mouth will tell of your righteousness , of your salvation all day long, though I know not it’s measure. Psalm 71:14-15

The song I referred to earlier is by Nicole Nordeman and it’s called “I Am”. If I was more computer literate you’d be able to play it now. Sorry. It’s worth hearing if you get the chance.  (Manoo’s adding this link - don’t miss this!!!)  Thanks to Sharon Winkler for the link.

http://www.youtube.com/watch?v=nxCmTMXua68

God Bless and Love,

Lara xoxo

latest update

Hey everybody! Well, my last chemo is done! My hair is gone, which is actually not nearly as bad as some might think!

For a few days after chemo I did have a rough time this go around. First of all I decided that since I would already be feeling pretty yukky that I might as well mostly go off of all of my pain meds. Stupid again!

The side effects this time were worse than ever. I guess as you get lower on your dose of narcotic, the body craves the drug even more making the withdrawl symptoms worse. I really though that as my doses got lower (and they are very low) that it would get progressively easier and not harder.

The other issue is that when you wean down so low the body’s muscle memory kicks in and old pain pathways (like the ones from the summer when I had my surgery) get reactivated. Sooo, I was in a lot of pain for a big wuss like me. (Not really, but my history of pain tolerance isn’t all that great.)

Also I had a problem with the feeing tube, which thankfully was taken out last Monday. I sent out a prayer request to out local prayer team and a few e-mail contacts and that blasted tube was out by 5pm and I’d had a great conversation with my Super Surgeon Vita who told me to stop trying to be such a hero and get my butt to the pain clinic. She told me to go back up some on my pain meds and go get seen in the pain clinic. She always told me to expect this as part of treatment and I just kept trying to do it on my own! Why do we do this to ourselves in so many ways?

So I’m feeling better. Pain is better, eating great, still tired and unpredictable as far as how I feel from one half day to the next.

The next step is the pain clinic on November 19th. I have my first big post therapy CT scan the first week of December and then I guess we go from there, depending on what we find. I’m expecting nothing but great news. I’m going to consult with Bills Doctor downtown about another antitumor therapy that impacts how cancer cells have their own circulation. Along this same line is the issue of my anticlotting drugs and how they plan to manage this permanently, the possible removal of my Greenfield Filter (which is a type that can stay or go) and the removal of my chemo port.

So we have huge leaps and bounds and miracles behind us, but enough loose ends in front of us to keep us busy with doctors and tests for a while.

BILLS UPDATE

Well Bills next big CT scan is on November 19th and he will see Dr. Ruckdeschel that day also. His energy level has remained remarkably good, as have his spirits. He is however still losing weight. He went to see an acupuncturist a couple of times, but wasn’t too impressed and is now seeing a Alternative Medicine Specialist who does incorporate acupuncture into his treatment, but is doing an enzyme study and a very detailed nutritional assessment to see what might be missing that might need to be replaced.

Those chemo drugs are really very toxic and Bill never really had a chance to nurture his body back to complete health before my health crisis started. Please pray that this Doc can help him out. AND of course that his CT scan shows nothing but good stuff inside his chest.

The kids are all doing great. Skating is great, grades are great and we are all starting to enjoy a little more family time than we’ve had in a while. Just simple stuff like me being able to sit through a short board game.

HUGE Blessing this past week was another life saving visit from our sister Sarah. God has certainly had a hand in her timing throughout this whole adventure.

Continued thanks for all of the support, prayers, meals, well wishes, flowers, foot rubs, cards and laughs that get us all through everything. Life is Good. Love is Good. God is Good.

Much Love and God Bless,

Lara xoxox

Cluck Cluck

Ok, that isn’t really how I wanted to start, but I thought the title would get your attention. (did it work?)

First things first, I just wanted to pass along that Mary skated GREAT at regionals. She’s the second alternate for Jr. Nationals from our region. Go Mary. If there’s a way to get a video or something on here I’ll have dad figure it out.

My last Chemo treatment was on October 11th and wasn’t too bad. I was nauseated, but never threw up. I was able to eat the few days afterward, which I didn’t really expect, and just did fine. Mostly, I felt increadibly weak and tired for at least a full week afterward. I can “DO” tired. So Praise be to God for that. As far as the hair thing goes, they told me I would “definately” lose my hair this time, but I’m remaining sceptical until I see handfuls in my sink.

Now for my chicken thing.

I got my hair cut REALLY short last week so that when the hair did come out it wouldn’t be in long pieces. Anyway, one night last week I go to bed wearing my underware and a tank top (the wife-beater style), and I really am so skinny right now (kind of a gross skeleton looking skinny). I got up to go into the bathroom and the super short hair is sticking straight up all in the middle of my head. I looked in the mirror, cracked up and said “Bill, you aren’t going to believe this but your married to a chicken” No Breasts, Not much on the hind quarters, but a little on the wings maybe. Bill tried to be comforting (which he was) but I had to get him to see the humor in the situation. So each morning I wake him with a “cluck cluck” and a peck on the cheek!

Cancer definately makes it’s marks on … I was going to say the body but it’s marks are EVERYWHERE. And for every ugly nasty mark left on the body, Having cancer has left multiples of beautiful marks left on my heart that I wouldn’t trade for anything. Would I feel the same way if my prognosis was worse? I hope that I would. There is a place where I’m headed when this body can’t do anymore and Jesus made sure that I’m on the guest list.

You’re on the Guest List too. Just say you want in on the party.

That was a pretty blatant call to christianity. I’m not ususally so verbal about sharing my faith in that way, but I heard about a message given at Kensington Church recently, where a child with cancer remarked that since he has cancer, people seem to listen to him more. (I heard this through the grapevine so it might have come across differently in its original form.)

Well if cancer has caused people to listen more closely to what I have to say, then the most important thing I can ever tell anyone is that Jesus loves them, died for them and has a way of living for them that brings peace where there should be none.

My Last Chemo is on November 1st, and I expect it will be similar to last time, with lots of miles logged on the sofa.

Bill is trying Acupuncture, hoping to get his taste buds alive again. So far he thinks it’s pretty cool and is very optimistic about it’s chances of helping.

Continued thanks to all of those amazing families who continue to support us through this with meals, rides, prayers and hugs!!

We’re in the Home Stretch!!

I think I’ve gone Hollywood!

Well now I know why all of those hollywood people get so addicted to Oxycontin. Wow -has it been lousy getting off of this stuff. I am almost done. I took my last dose on Friday morning and the withdrawl symptoms last about a week each time I drop a dose, so hopefully it’s just a few more days of feeling like a big star!!

Up next is chemo. I only have to have 2 rounds, but am told it will be much stronger than last time. (I will NOT be dying my hair this time). The first treatment is on October 11th and the second will be 3 weeks later. I really want the doctors to blast me with chemo this time. At this point it really seems to me like I might be cured of this disease, rather than just on a “yada yada chance of living yada yada years” statistical chart. If feeling really awful for a few more months is what I have to deal with then I really want them to bring it on!!

Obviously I’m feeling couragous today. I have days with lots of different emotions and I don’t always feel so strong. I know deep in my soul that it’s the perfect love of God, demonstrated by loving and caring people that make all the difference. God also gives me courage through his word. Opening my Bible is never a let down!

The last few days have been difficult, as we said our goodbye’s to Natalie. Her funeral was truly beautiful, but also heartbreaking. Mary is doing ok. The girls were such good friends for one another, having this cancer connection. Towards the end, Mary got to spend a lot of time with her in the hospital, and she was so comfortable at her bedside. It made me so proud to see her having such compassion for her friend and the courage to be there, with her, for hours sometimes,despite it being such a sad and scary situation.

I’m including a few photos of Natalie so you can all put a face with the name. She touched so many people who never met or saw her. (photos will be posted late in the day today, and if they don’t appear below then they are posted in the “photos” file.)

Continued thanks for continued love and prayers.

God bless and love,

Lara xoxo

Mary’s Friend Natalie

Early this morning at 2:05  am Natalie died peacefully in her sleep, with both of her parents at her side.

Obviously there is no way to make sense of something like this,but I know 2 things to be true.  Natalie is now with her creator and she is safe in the arms of the one who loves her most and (second) for those who like Natalie have given our lives to Jesus, we’ll all be together again on the other side.

So far I don’t have any details about arrangements. If you would like to have that information when I get it just e-mail me at billlara@yahoo.com and I’ll forward it along.

Please continue to keep Natalie’s parents in your prayers (Maria and Sumo), as well as Mary and the many young friends of Natalie, many of whom are experiencing death for the first time.

God Bless and Love,

Lara xoxox

Short Update on Me and Natalie

Hey everybody, time for an update.

Well, Natalie who was not supposed to “survive this infection” is surviving her infection. She is still in pediatric ICU at U of M and beating her little energizer bunny drum! This doesn’t change her prognosis, but continues to give her hope. I believe in miracles, and if God is handing them out I would think the little girl with the sweet disposition and an absolutely solid belief that she is going to get a miracle to be first on his list? Who knows but for now she is still fighting her illness with all the strength she’s got.

As, for me. Well In August I spent 10 days in the hospital because I had pneumonia and another pnuemothorax. Dr. Sullivan said that when an area of your body has been radiated and chemo’d before surgery that you just don’t heal as nicely and are more prone to these types of problems afterward, but that if I didn’t cut it out she was going to have to do another BIG surgery on my chest. I’ve been trying to behave myself.

In the meantime, I am home, getting IV antibiotics (for the pneumonia) and trying to gain some weight. For a while I had mostly good days mixed in with a few bad, but now I’ve started weaning off of my Narcotics. I was warned that this would be bad. (I thought I might breeze through this part). They were right, it is bad. It feels like a severe case of the flu, with some post operativve pain thrown in. To be very honest with all of you, I HAVE HAD ENOUGH OF THIS fill in your own word!!!!!!!!!

Just when you get a moment of victory, you get another thing that you have to fight your way through!! I’m so sick of it!!

But I am fighting. Every day with prayer, and reminders from others that “this will pass” I am fighting. Sometimes I’m just a big wuss and cry my eyes out out of frustration, but they are usually tears that feel good on your face and feel like you’re washing something away.

We continue to be supported in supernatural ways with meals and rides and extra love shown to our children. Sometimes there are cards that come at a moment that was particularly special, and the words get me through a day that was headed down the tubes. Thank You.

Next on the agenda is more chemo, which starts on October 11th.

Psalm 18:28-29

“You, o Lord keep my lamp burning:

My God turns my darkness into light

With your help I can advance against a troop:

With my God I can scale a wall”

God Bless and Love

Lara xoxoxooxo

Natalie

Well everybody, my plan was to FINALLY update the blog. Things haven’t been going great and I have some specific prayer requests, but first an update on Mary’s friend Natalie.

About a week ago the docs at Uof M told Natalie that that stem cell transplant had not worked and that there was no more that they could do for her. Mary has seen her a few times since and her attitude continues to be unbelievable. She just wants to fill every moment with fun. Last night we got a call from the social worker at the U saying that Natalie now has an infection that the Doctors say she will not survive. The social worker was calling us requesting that Mary come to see Natalie today for a “Queen for a Day Party” and that Mary be very dressed up.

Please pray for Natalie, please pray for her parents (Maria and Sumo). Please pray for Mary and for all of Natalies friends who are saying goodbye way too soon.

My recovery has been difficult. I was prepared to give out the details but it all just pales in light of Natalie. I will update my own personal stuff later, but in the meantime please pray for my constant upset stomach, my weight loss, my fatigue and that my weaning off of the pain meds, which begins tonight, goes by easily and fast. Pray for my magnifacent husband, who is managing so well and seems to have deep wells of love for me and the rest of his needy family that just amazes me.

God Bless and Love,

Lara xoxo

……and the (pity) party’s over

Hey out there, freinds, family, and prayer warriors. The pity party is long over. I’m still in the hospital with the chest tubes. Dr. Sullivan is hoping to be able to pull them and get me out of here before Monday. Things at home seem to be going great. Cousin Maureen has held down the fort with the boys, and
Bill continues to hang in there despite the many hats he continues to wear.

Wallowing was ok for a little while, but now I have lots of physical and spiritual healing to do, so I can’t waste even one more minute! This week, when I was “losing it” God was planning more blessings. I have not heard the message or even seen the e-mail, but earlier this week a communication went out from Jeff’s school about what our family’s trials have been recently and have made the whole school a source of love. Moms from church and moms from school have teamed up to make a plan about coordinating meals. I’m just blown away!

Is There a Mountain someplace that I can shout from? It’s so clear that Jesus cares for us by teaching us to care for each other.

Love and God Bless,

Lara xoxoxoxoxoxo