Monday, December 3, 2012

Processing and Holidays...

I haven't updated for awhile, In part do to the fact that there isn't a whole lot going on, but actually quite alot going on at the same time. We had a fun thanksgiving with both of my siblings and their wives and my wonderful nephews! It was a fun time with friends and extended family.

Hayley is continuing her weekly chemo, and is about to start her infusions as we speak. Her body is responding well to the cocktail of poisons running through her system. We are thankful for this, but its a challenge all around for her and my brother and nephews. Continue to lift Aaron and Hayley up in prayers.

Us?

Joel is continuing to work 3 days a week, fatigue is playing a huge role in his brain re-adjusting to this new normal. We are both so thankful for this last scan to have been so positive, but in all reality its also a bit hard to swallow that scans every few months are now our new normal.

I miss normal. Oh dear God, I do. I recently have had a few friends ask questions about how I was really doing in this... Well I don't know. I am thankful I have my spouse along side me, but at the same time nothing will ever be the same. Good or bad!  I miss our old life on so many levels, a carefree sense of expectancy in growing old together and even better the ability to embrace dreams without fears.

There are days when we are frustrated or even angry. As long as these aren't on the same days, we work through it all ok. I can't say its with amazing finesse, but purely with the grace of God do I function with patience on our hardest days. Joel has had to learn ways to cope with his own frustrations, and this is indeed a work in process. I am so thankful for the friends and family around us that really do have so much grace and understanding. For those that haven't been understanding, its saddening. Joel is learning so much every day, but in some ways its hard to grasp that this is real, things have changed and will never be the same. We both see counsellors on a regular basis, this has helped me have a sounding board, and Joel to process. Joel initially was having a hard time processing emotions but now this is improving greatly. We are super thankful our insurance finally approved some extra testing and therapy for Joel!

Our little girl is doing well. I am amazed at how resilient she truly is. Her sense of joy and adventure in life warms every part of my heart. She is both a miracle and a blessing. I thank God daily for her. I can't say it enough how thankful I am.

Me? I am doing pretty well. Right now I am fighting off a bug, Pray this is short lived and doesn't touch my lungs. The joy of working in a hospital.... But I need to be able to work. We depend greatly on this.

As we are getting ready for Christmas this year, its a bit bitter-sweet  Last year we were so naive to the path that this year has laid for us, its painful in some levels for I yearn for that feeling once again.

Continuing to be thankful for the love and strength that has surrounded us this year. Please continue to pray, pray for healing of Joel, pray for peace on our rough days, and joy when it seems hard.

Thank you.

Wednesday, November 14, 2012

Thankful!

Thankful...

In this season of thanksgiving, we have so very much to be thankful for. Starting with the basics of each other, and the supportive people that truly have surrounded us this last year. Each and every friend has meant so much. To know we have had people fighting prayerfully for us in the hardest of days, and continued to pray even when times are good. From countless meals, timely groceries, money, gift cards, hours of leave donated, gifts, cards and prayers....  Thank you.

Our lives are so fragile, Never EVER would we have imagined last thanksgiving, what the days ahead of us would unfold. Our hearts are so changed, and filled with thanksgiving for continued provision and grace. We are humbled by how close we nearly came to loosing each other multiple times this year.

With all of this aside God is good. With out faith this journey would be impossible.

Joel had a scan last monday 11/5. We both get a bit tense during this time. From the days before the scan, until we see and read the results, our anxiety levels can indeed spike. I did joke today with our oncologist about getting me some meds, not Joel for the scan.

Today we had our appointment. It took us forever to be seen, we had a long wait! Always adds to the stress, stress that was for nothing....

We are so relieved and excited to breathe yet another sigh of relief that Joel's most recent MRI, one week ago was again STABLE! No growth. Yes a little bit more scar tissue, but there is still so much space! No chemo for now, no added stress of travel to California, and nothing new to worry about, regarding his brain...

Thankful... we are so thankful indeed!!


Thursday, November 1, 2012

Trick or treat!

We had a fun last week.... Us chipmunks Simon, Theodore and Alvin!

I am slowly getting back energy, except for my body hating flu shots... We are heading the right way!!

Work is progressing for Joel... He has an MRI on Monday... I get a bit nervous but can't change anything!

Here's a few photos from this past week...

Do pray that Joel's scan comes back clean and that I can work my weekend!! A pay check is a blessing!


Random pictures from football, cousin fun, pumpkin carving and trick or treating!!

Monday, October 22, 2012

Pink run!

Last update, I was still hospitalized. I was realized a few days ago... I am feeling better slowly but will continue to be closely monitored... I spent last week sleeping a lot.

Yesterday Joel ran his first 5k. I am so proud of him. Princess really enjoyed it too! It's for a great cause too! Go team pink!!

Here are a few pictures... I wish I had more time to share more but, preschool awaits.

Continue to pray for healing and wisdom from the drs for myself. I need energy back.

Pray for continued provision and flexibility with Joel's work.

And pray for princess as this last year has been hard on her...


Here are the pictures! Go Joel!

Saturday, October 13, 2012

Whats new?

So a quick update-

What's new with us? As I have previously posted, I have been having a great deal of difficulty breathing. I was hospitalized about 3 weeks ago for this. Yesterday, I earned myself yet another admission.

Initially the doctors felt this was strictly asthma. But thanks to a caring pulmonologist, he refused to accept this answer. It didn't add up. My labs were off, my lungs were quiet, not wheezy. The picture was off.

Back track a few moments with me.

I have a condition called PolyCystic Ovarian Syndrome, (PCOS) This condition goes hand in hand with another condition called Insulin Resistance. Its not diabetic, but it is treated by a medication called glucophage. This medication is also used to treat diabetes.

This medication has been a part of my treatment plan for ten years. Though it took time to get used to the side effects, it benefited me greatly, and I tolerated it well. It helped me safely carry our daughter. As this medication reduces the risk of miscarriage for women with PCOS.

There is a rare side effect of this medication, its called Lactic Acidosis. This is extremely rare.
This happens when lactic acid builds up. Lactic acid is mainly produced in muscle cells and red blood cells. This forms when the body breaks down carbohydrates to use the energy during times of lower oxygen levels.

So, back to three weeks ago. When I was admitted three weeks ago my lactic acid was dangerously high. I had this condition called lactic acidosis. This occurs when the lactic acid builds up faster than it can be removed. Lactic acid is produced when the oxygen levels in the body drop. So asthma seemed to be the likely cause.

I was placed on high dose steroids and slowly began improving. Steroids not only reduce inflammation that can go along with asthma, but can reduce lactic acid. All I knew is, I was getting better.

My steroids began to be tapered, But this created symptoms again. Muscle weakness, shortness of breath, and the start of respiratory failure. Again.

Friday morning, my doctor sent me to the emergency room, I was readmitted promptly, initially for asthma. Labs came back. My lactate was again high.

Asthma vs Glucophage discussion entered the picture. My wonderful Dr.looked at the whole picture. Took me off steroids, only after I received a TON yesterday. and felt like we needed to see what my body could do, or would do.

My lactate is starting to drop! Yay! (I also recieved tons of steroids.)

I hurt from the high dosage steroids I received and had pulled out from under me...But we have to do this. No glucophage, no steroids. Did I mention I ache? Oh dear Lord I ache.I am so puffy as well.

So pending my echo report, labs and a few other consults, we are hoping this is what has made me so sick.
Its a viable thought, and we are optimistic I should get better soon. We do have to rule out a few other things.

Until then, I will be parked in the hospital until I can prove my lactate is dropping and my heart rate is more stable. As well as my breathing and muscle weakness improved.

I am still quite sick.I am tired and I ache. Did I mention I ache?

So please keep praying.

Pray I can sleep. This is not an easy task. Pray for Joel as this is quite stressful. Pray over princess as this is all quite a lot for her.

Continue to pray over my sister as she got her port placed for her chemo, and has been quite painful.


Thanks for following our journey. We know in deep faith that the best is yet to come. As we continue to to take this journey day by day. We remain joyful.





Wednesday, October 10, 2012

quite busy

What can I say? I keep busy. Our life moves quickly. Joel working, my attempting to work despite still recovering from asthma, and princess well being 4... Keeps us on our toes.

I had a birthday! We had a fun day. We got my wedding ring sized- yay! It's so nice after not being able to wear it for the last year, due to weight loss to have it back!

A photo I had on the blog in the start was from my birthday one year ago. BC as we sometimes reference it too. It's a bit odd to look at this photo. It reminds me of days of unknown bliss. A ticking bomb was growing in my hubby's obviously swollen head. I had no idea. Though I do see signs now.

BC a term and concept that is so foreign. Cancer a word my daughter knows all to well. Her love and concerns for not only her daddy, but her Auntie Hay, run so deep, sincere and beyond her years.

My princess should not know about cancer. Yet alone worry. But I can't isolate her and pretend life is BC. I answer questions that make my own head spin on a regular basis.

BC- we were blissfully unaware of how joyous and what an event a birthday truly is. I am determined to celebrate big each year. Birthdays. Holidays. Memories. I owe this to cancer. Yes, I still hate cancer, more than ever. Watching my family continue to fight and fight as hard as ever seems so wrong. But, we are strong, our God is strong and we fight with an army of friends, family and new friends. Thank you.

Please do continue to pray over my own healing. I am still having asthma problems and my body is still requiring high dose Steriods. My face has become quite puffy, and despite steriod fueled energy I remain fatigued. Yep awake at 4am.

Princess is struggling in this season. She adores Auntie Hay, and worries beyond her years for her cousins. She knows cancer, wishes they didn't have too as well. She is processing this season too. Pray we are patient with her in it.

Joel is doing well with returning to work. It's been very stressful. He is more tired then he expected but given he was off 9 months to the day, I am not surprised. He also is experiencing a plethora of emotions watching cancer instead of living it. And when you are missing a portion of your brain, processing can be a challenge. But he is honest in this. I love him so much because of that. New Joel is quite love able too... I can't begin to say how proud of him I am. He makes improvements daily. His lack of filter post brain injury makes us communicate differently, but honestly I love this!!

He is so thankful for all the love and support, and appropriate; help, care and thoughts that have and continue to surround us. Its been so great to be surrounded by positive stories, and encouragements. Again to my parents we don't know how we would have survived and continued to survive without you. Your positive encouragement has been our backbone.

Thank you for continuing to pray and support us. Brain cancer will always be a part of our life and on our mind... Ha...life will never be the same, we will never be the same. We know with God all things are possible as we embrace the days ahead.



Monday, October 1, 2012

Ready or not...

We made it! Where!? To Portland.. My Sis in love, her mama and myself face a day of tests scans and appointments...

Pray for Hayley- as these are her first mris cts and bone scans. Pray for rest...


Pray over my family as this is a lot for Joel and princess to be apart from me!


Love this picture of my hubby and sis !!

Thursday, September 27, 2012

Cancer.

Cancer.

What can I say about cancer?

My husband is not the same. His brain has changed, emotions are different, he gets tired easy and frustrated faster.

We are living in an injury that will be with us. The trauma of cancer and many scars... As well as the portions that remain inside his brain.

Connections are different, we have seen each other at absolute worst. Me stressed to near break, pushed beyond what a person can bear. Him enduring physical trauma like that of torture- Yet, remaining positive, even illogically...

Cancer. Few understand it. Many try with deepest intentions, but until you live through oncology offices, devastating news and still have to get up in the morning and function, you don't know cancer.

Until you face normal life understanding yours is so far from "normal" and hold back tears out of shear sadness for what you are loosing, you don't know cancer.

Until you watch your other half so completely out of control of his mind and body, you don't know cancer.

Until you explain to your beautiful child, why daddy is so different, you don't know cancer.

Until you find yourself, explaining to strangers why you may not have more kids, you're glaring down people coveting handicap parking in long days, you're navigating impossible finances tighter than before, you find yourself arguing with insurance companies, filling out paper work, phone calls, being hyper vigilant, you fear every twitch is a seizure, you plan everything because spontaneous days are over, you are feeling 20 years older than our counterparts, you are finding it hard to connect with friends and family- yet alone make new ones, and random advise of good intent makes you scream. Until this you don't know cancer.

Dr appointments run in our life. Brain changes run in our life. Exhaustion runs our life. Change runs in our life. Cancer changed our life.

Cancer. I hate you.

But God I trust you.

I continue to trust you. The first moment in the depth of the valley, you were there. I was never alone.

You changed my cynical spouse into a man who loves. He views life with grace and courage. I am so proud of his raw determination. It's amazing. He is brave. God you are good.

God you have shown me we can be pushed to the limits but our bodies and minds are your creation. They are amazing seemingly without limitations. Adaptable, evolving into the roles that need filled. God you are faithful. There is fruit from this season.

A new normal is blooming, what pains me that with this, there also blooms more cancer.

Give fruit to this season once again Lord. Renew us as we step forward day by day. Cancer or not you are beside us. Continue to provide and strengthen us.

Thank you for praying for my family.

Tuesday, September 25, 2012

Difficult to digest

We are back home from the hospital... I am feeling ok but am extremely weak. My energy level is low. I ache. Asthma stinks.

Joel had a 1st day back at work... He loves his job and is so thankful that he can work, yet it's hard to walk into an unfamiliar yet familiar place! It's gonna take time but I know he can do it.

Today he had a nerve study done on his neck. They feel like there is damage to nerves and its effecting his shoulder.. An MRI will be done and more pt.

On a more difficult note, my sister in law, Hayley was diagnosed with breast cancer this evening.

Cancer. I hate cancer. Our hearts are broken tonight. I know oh to well the pain my brother is feeling. His beautiful other half is now facing something so far beyond our grasp. But God is greater. His love endures and with Him all things are possible.

What the next few months bring? No clue. A cure for cancer would rock. What are the chances that both my brother and I would have young spouses diagnosed with cancer in the same year? .. I can imagine quite slim, but it still happened....

My gut wrenches out of deep agony for the pain inside my brother. It's as though a knife had plunged deep into your heart. I vomited for the whole night after we were told. My mom had to help me get dressed... My heart is broken. I never want anyone to feel that pain. Pray for Aaron and Hayley. Pray over my beautiful nephews.

Here is her blog http://lifesprom.blogspot.com

Sunday, September 23, 2012

Familiar view

I mentioned in our previous blog, that I wasn't feeling well. And due to me being stubborn I was determined to not end up at my hospital. Yup I lost. Yesterday I got sicker. Earned a few days of rest, steriods, ivs and uncomfortable beds. I have to be honest, I fought admit, due to the finances... And stress.

Bright side Monday Joel goes back to work! I am so excited for him, and proud of him!

It will be 3 days a week starting at four hours and gradually increasing, eventually to full time! We are thrilled! And thankful!

Despite being in an uncomfortable bed... I am thankful this morning. Thankful my husband can sleep in the room with me, thankful for my amazing rt friends who care deeply. Thankful I can catch a breath for a few minutes anyways.

Pray for Joel as this role reversal is hard. Pray for our daughter as she needs peace. Pray for sleep and recovery for me. I am looking better but still sick.

Sick of hospitals. Asthma sucks. Cancer stinks. Praying specifically over a dear sister today that we aren't going to have more hospital time in days ahead. Complete healing and negative biopsies from here on out.....

So it's been a stressful year but we continue onward trusting the best is ahead.

Sunrise from my room this morning, beautiful river view... Too bad I never slept to wake up to it! Ha!

Sorry it's random I am puffy and a bit wired this morning!

Thank you for loving and praying!

Tuesday, September 18, 2012

Few more photos

A few more pictures from the weekend! We are thankful to have connected up with this group. We look forward to many years together! Bend cancer center, you rock, thanks for recognizing the young survivor!

They teamed up with First descents, it is a great organization and we are blessed for Joel to be a part. I look forward to joining up as a rock as well!

So since asthma isn't cooperating for me, I slept less than three hours last night... I crafted, cleaned and watched tv today. I honestly am bummed since running our 1st 5k may have to take a bump for me... I was really looking fwd to running it with Joel. Poopy. Wow must be on steroids... I said poopy on the blog! Plus I actually finish crafts I start... Tonight yarn wreath. I feel a spring wreath completion and some coasters for the living room?

All busyness aside...

Thursday we have a work meeting. Please pray over this with us. I am claiming continued health care coverage.

Thanks for continuing to follow us. Your love, compassion and generosity has been a powerful force...

Monday, September 17, 2012

Fun weekend

We had a fun weekend!

Joel joined up with a group called first descents. Other young cancer survivors and rocks (the supporters) go on adventures!

Mckenzie river rafting!

Me? Princess and I had fun seeing family in central Oregon! Horses, cousins, and a spoiling auntie!! We loved it! Looking forward to next time already.

Continue to pray for Joel's work return. We are getting close!

Pray we can maintain his health coverage... As mine doesn't compare.

Also continue to pray for our return to the new normal. We are getting close but we ache for this.

We remain thankful and encouraged. Some days are harder, but it's just day by day. I read less about cancer. Pretty much concluded it bites, but we fight.

To our friends and family that have been patient and compassionate in this journey with us... Thank you. We are learning, but have no regrets in this. Other than the whole stupid cancer thing....

Enjoy our weekend fun photos!

Wednesday, September 12, 2012

Work, school and summer winding down...

Busy. No other words describe us. Preschool is in full swing, as are all the viruses that follow... Thankful we aren't doing chemo right now. She loves preschool and it's given a little more time for appointments, phone calls and errands.

We are continuing the paper trail, to get Joel back to work. This is important for his recovery and insurance benefits. He is doing well otherwise. His has pain in his shoulder at times, occasional headaches, and is making more progress daily. Nutrition modifications and supplements seem to help as well.

Myself? Busy too. Work has been busy and left me worn out at times. I seem to grind my teeth and keep breaking fillings/teeth. Oh stress. Ha, ironically we have less stress but at times I feel it more. Canning was my activity today, jam made and freezer full of goodness for the winter. Salsa, peaches and applesauce in the next weeks!

Joel, is going to go rafting this weekend with other young cancer survivors. First decent is the group, its a national organization providing adventures for cancer patients! Joel is stoked! Praying friendships are forged from this.

Continue to pray for his return to work this is important to him. And a step toward a new normal.

Thank you for continuing to pray, love and support us. I am thankful for continued compassion. It continues to ease this journey a bit.





Thursday, August 23, 2012

Soaking up summer!

We are busy as usual.. Lake days, fair fun, organizing for fall, work and enjoying garden goodness.

Morning have been crisper and its crazy to think about what our last eight months have been.

We are hitting a bit of a calm and true chance to achieve normalcy... It's weird. A bit hard to adjust.

Joel is eager to return to work, but it's taking longer than we would like. Please pray over this.

He also has the opportunity to join with other cancer survivors-- Next month for an adventure! Pray it works out! Connection with other cancer survivors would be good for his soul. Plus it would be our first night apart- except when he was in the icu in Cali- I hardly call three hours apart..... Ha!


Continued generosity and compassion overwhelms us. People are remarkable!
Work families of ours and my parents- amazing we feel the love for sure!

Thank you for continuing to follow our journey and pray with us. Best is yet to come!


Here are a few pictures!