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.

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!!

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!!

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!

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.

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.

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 !!