11+ years

 Hello. It’s been a few years. Life. It’s been busy. Joel is a full time stay at home dad. We had twins and the spice they brought to our life with our now teenage princess has been what we needed to sustain our journey onward. This is my last post on here- I did feel the need to attempt to close a bit of this loop on the internet. Again no idea why.. other than a splash of hope to the visitors who search late at night for a 11+ year, grade 3 glioma survivor. 

I recently wrote this on a post on fb to my friends and family.

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4-4-23

It’s been 11 years since Joel’s major surgery at UCSF. 7 years since tumor advancement and progression. I would be lying if I didn’t think of this date as bitter sweet. It’s changed our life. Some for the good as it also has a lot of good surrounding it. So many highs and lows have been a part of these days. 

I can remember vividly sitting in the chairs in the surgery waiting room for hours on end. My dad was often close by- we sat silently with so many emotions. 3-5 hours turned into over 12 hours+ each hour stretching my strength and patience. All to end with finally seeing him not waking well in the icu. The future was groggy and so terrifying to imagine. The days that followed scary yet memorable. 

Followed by 4 years on (4-4) later learning his tumor had started growing with more aggression. The drive home after having driven to Seattle that same day was horrid. (I drove around 14hrs in a 22 hour period) It was raining heavily, and with tears streaming I white knuckled the wheel to get home my babies.  His memory and the weight of the conversation with the doctor, was replayed over and over.. he didn’t want to believe it... and frankly neither did I. Radiation, chemo, multiple appointments, all brought a new level of chaos to our young family. 

The struggle of managing to fight for his life, while continuing our life, was nothing short of fatiguing. I was working, with young kids (twins were not even 2), coordinating his care, fighting insurance companies and surviving. 

Today our life is not what we imagined when we married. Some days have more of the lows than the highs. I don’t regret the energy, money and tears spent. 

Joel is here. Our kids adore him. He loves to spend time with his kids and knows more about them than I do at times, at least their interests. He has patience for classmate birthday parties (not my jam) and alarms for pickups. I am so glad our kiddos have him and so relieved I still have these parts of him. 

There are parts of him that have changed. Brain surgery does that. Significantly. We wouldn’t deny that. There are parts of me that have changed too. The pandemic in healthcare has been exceedingly challenging for me as well. All in all— This journey has been wild, and isn’t over. 

I am not online the same way as much.  And honestly, I share less and less- but my gratitude for this season remains. My parents have helped exponentially with strength, and a pillar for our kids. 

The support and love from this part of our life has sustained us in those rough moments. So for that, thank you. 

May you also continue forward day by day- or even breath to breath. 

2 years ago...

Today we reach another day we won't forget. Two years ago we walked into UCSF for the longest wait of my life. 

Joel was prepped, lines started, and every part of me had to breathe deeply; trusting our God. I don't say it lightly, but this day and the seventy-two hours following changed our life.

I stayed close as possible to Joel as the minutes ticked closer, we waited and waited. Finally anesthesia came, I kissed Joel a few more times, and watched him wheel into the neuro OR.

It was hard, but to the waiting room I went. My dad insisted I eat lunch, which was brilliant, and I then made my little nest in the waiting room. Phone calls and OR updates would come in, hours would come and go... The initial time frame of five hours for his surgery rolled into a grueling Eleven. Longest day of my life indeed.

The surgeon look exhausted, but was optimistic. I have no words but gratitude and praise for him. His passion and desire for perfection are gifts. He took the time and finished right, no staples, only hundreds of well done small stitches. Joel's hair re growth thanks him.

The next days that went forward were by far hard. Joel and I, in a city with very little but each other. His obvious healing was rapid, the surgeon was pleased, recovery as a whole was harder and more exhausting than imagined.

Joel's last scan in January was stable. A celebration we don't take lightly. His next scan is in a few weeks, we are praying for another stable scan.

Us? We are growing! We are 24 weeks pregnant with boy-girl twins. We laugh at how little has happened as we "planned" but are so thankful that God's plans are better than our own.  I'm working hard at growing these babies, which is no easy task.

Our daughter is thrilled to be a big sissy. She continues to grow into a caring, funny, brilliant young lady. I couldn't be more proud.

Continue to pray, at his next scan we need stability. We need strength and energy as the months ahead are so busy yet exciting. 

Thank you, for following our life. Praying and sending good thoughts have surrounded us countless times as we have trekked this journey, and continue forward.

Our life is changed, but not destroyed. The new normal is always changing, and is changing more everyday. Cancer will always be in our life, but it won't control us. 

Two years...

Two years... Where has time gone? Two years ago today, on a chilly Monday morning our life changed. Joel had his first seizure right in front of me. For a few moments in my life, I was unsure as to whether or not he would survive the emergency room. In those long first 5+ minutes of his first seizure, very little crossed my mind except, that this is very bad. He was purple and ridged. I was terrified. I cant say enough how thankful I was that once the seizure ended he was breathing. 

Then the fateful moment in CT. A large mass. I pretended I didn't see it, as I was suddenly an outsider in my own environment. The moment we returned to our ER room, I was greeted by the dr. This is not happening, I tried to pretend but it was far from true. The er dr said "you can tell him or I can." I insisted on telling my hubby. I told him 5 times. He kept forgetting. I've joked about the frustration about having to tell my husband so many times as post seizure he was forgetful... But in all honesty it was how many times I needed to hear it.

Immediately my family surrounded us. My physical and work family. The staff surrounded me with support as the reality hit home.

The next 8 days are a blur. A blur of motion and emotion, blurs of neuro checks, medications, anxiety and little rest. Tears were shed. (To the point of vomiting) Final wishes and dreams shared between Joel and I.  Many of those closest rallied to surround us, while the storm continued to rise.

We hoped to God, it would be simple. And when it turned to be more than a benign tumor, I was so unsure of what our future would have. Two years seemed so scary. Our future, our jobs, our daughter, future children all felt so uneasy.(And far from obtainable)

Cancer may continue. As we will by medical standards never hear "cancer free" but we are living life. Work continues, Joel is independent, drives, and is fully capable. (I couldn't be more proud) I continue working, so thankful my coworkers and management support me. Our daughter, is so kind, patient and bright. Cancer has not destroyed her as I initially feared, but rather built her up and strengthened her with compassion. Do I fear that cancer with ruin our twins? No. With enough love, support and faith we will persevere. I do feel sad they will never know life outside of cancer. 

I do still miss carefree days, of dreams without reality. I also, miss parts of Joel and myself that will never be the same. I do still hate the weeks leading up to MRIs where every headache and every little twitch brings a slight bit of nervousness that the gray-mater is being changed or invaded... Fears that I will have to fly south with Joel for treatment...as I'm certainly not getting smaller. Ha! These babies are growing! (and so am I)

Two years. A lot of life has happened and continues to happen. The shock is gone. Though tears are still shed over the injustice of this imperfect life, (of course I'm pregnant.) Peace walks along side, with a still confidence that life will continue, and that we are not alone.

Faith has been strengthened, tried and renewed. Love has been put under intense pressure as lessons and patience bear fruit. God provides. 

Two years. Seems like so little time yet so far away. The sights and the smells, are all still so real. The stings of those whom we thought would be closest but only brought hurt remain. And the warmth of love from those we least expected continues to this day. 

Cancer knows no age, person, or situation. It changes our life, our bodies, and our futures... But it doesn't take our love and hope. 

Please pray for peace, as we head into scan week (next week) Monday MRI, with results on Friday. Pray for stability and wisdom for our drs.

Thank you for following this journey. It's been crazy and will get crazier at times. Your love, support, faith and prayers have sustained us on even the most scariest of days.

 

Busy! Thankful! Blessed!

Hello blog world,

I obviously either dropped off the face of earth of we have been busy living life in-spite of cancer!

Good news! Joel's last scan in September remained stable. We continue to live in thanks and humility at those words after scans. We know one scan, with even a mm of growth will turn our world around again!

This past season we moved, it's a positive thing! A lot of work though! It's a single story home in a great location. Praying this is long term home.

Princess started school... Kindergarten! She adores it! We love her school and are thankful for our new community around us! She loves reading. She is such a bright and caring kiddo. We are so blessed to be her parents! 

Joel continues to work full time in Corvallis. Today we got the exciting news of a transfer closer to home. We are so thankful. Truly what is needed! Good bye commute! 

Me? After nearly a year of infertility meds... Ups and downs.. Countless shots... Procedures...surgery... Disappointment... And exhaustion... I'm pregnant! I'm very sick with a condition called hyperemesis. Basically, I vomit often, am dizzy and dehydrated.. requiring medications and iv fluid. This causes, missed work and smaller pay days... But we couldn't be more excited!

Next scan for Joel is mid January! Please pray it continues to be stable! Pray over me and our little miracles.

Another birthday!

Princess is turning another year older! We are celebrating as parents of young children can.... Presents, friends, parties and treats. It's hard to believe how much life has changed in the last year.

We are exceedingly grateful. She is a miracle. We celebrate every birthday extra hard as life is truly so precious!!

Our life is slowly becoming more normal. We are praying for a job transfer closer to home for Joel. This is critically important as commuting feeds his fatigue/energy levels/which affects critical thinking.

Joel is doing well, I am so proud of him. We still have frustrations at times but, it's improved dramatically. 

Me? I am still busy. Working as much as I can, but continuing to fight hormones. Fatigue has been a challenge as I haven't felt quite like myself much (energy wise since my last hospitalization) that med really was hard on me!

So I guess it's safe to say, we are trying for another baby. Unfortunately we are climbing another uphill battle. I have pcos (poly cystic ovarian syndrome is a condition that caused me to have miscarriages, ovulation problems, and was why I was on the medication that almost killed me last fall.) I also have Endometreosis, and this January I did hormone injections to block the extra growth causing chronic abdominal pain. (Read into this side effects! Migraines, hot flashes, menopausal)

Add that into; the lesser known side effect from brain injuries is the effect of injury/surgery on neuro transmitters... Aka hormones, so we have had to fine tune Joel's levels as well. This has been a bit challenging but is slowly improving. To say the least, we visit my fertility dr often. We are thankful for a caring dr who has been in our life for many years.

Why am I sharing this? Not to be felt sorry for, or to be asked questions like "are you pregnant?" but rather for other families who are struggling to achieve a level of normalcy AC (after cancer) striving toward dreams from BC (before cancer) with some sense of hope. This is what we always dreamed of, cancer delayed this dream, but it did not crush it. We feel strongly our little birthday princess was intended to be a big sister, not an only child.

Well I guess some would ask why? Why add more to our plate? Why risk my health again? Why not? Why let cancer stop us? Cancer will always be over our head... Ha! literally in his. We accept this... don't really like it, but accept it. There are risks on all sides with this. But why run life on risks and what ifs? Is my God not faithful this far? Why would this end? He promises to never leave us, and he hasn't yet.

In our honest approach with cancer, we feel this includes our infertility journey. My posting about this subject may be limited, and poorly detailed, but ultimately I intend to continue to share our story. Do know we are already a few months into this story.

So. That aside if you wanna pray... Pray for Joel's job. He enjoys working, but commuting is becoming an evident problem. 

Pray for me, as my miscarriage rate is high, the cost of infertility is costly in both a financial aspect and emotional aspect. This is taxing on my body, and tests can be painful. Pray for princess as its hard on her having mommy off her kibble... 

Thank you for continuing to follow our life. Know the best is yet to come!!  

Woohoo!

Once again we had our 3 month scan... End result....

Stable!!

Another MRI without changes.

We are so thankful, beyond blessed to walk out another day with news like this.

Thank you for continued love and prayers.

Next scan 4 months!!




Until then? We are living our life.

Life goes on...

The last weeks brought Joel's 30th birthday. Thankful! Thankful, to say the least. We are so grateful.

Missy has been busy! She has gotten lots of cousin time in. She adores her boys! Easter and Hayley's surgery brought many times for memories.

Hayley, my sister in law, had her mastectomy last week and is recovering well, considering.

Me? Busy too! My house is a mess, but I am feeling better. Last night I had my first success at running with a decent time!

Joel's next scan in May 13th. Pray his scan is clear! For we are on the cusp of hearing "remission" one word I long to hear. Also pray as we make more decisions, effecting his care, job and our life.


I can't say "thank you" enough to our army of family and friends!

Here are a few photos from Easter... thanks again Hayley for taking them.