A Day of Thankfulness…

Day 180, Thursday, November 23, 2017

Thanksgiving has always been one of my favorite days of the year…not just because its a day to stuff our faces full of food but because great and wonderful changes in my life have always been around this holiday.   Last year, a day before Turkey Day I was offered a new job…something that I had thought was out of reach and I thought would never happen…but I got the call regardless and I felt like I was stepping into an exciting next phase into my career after years of feeling unappreciated and like I was never going to progress.

This year with everything happening, I was not looking forward Thanksgiving.  I have plenty of things to be thankful for this year, but I just couldn’t get excited knowing that we still have a long road ahead of us in my recovery.  My chest was still hurting me on Monday and I was anxious to hear back from the doctor to see if the biopsy results had come in, so I sent an email to Dr. Farol to ask him if he could please call me before Thursday so I didn’t have to wait the long weekend to know what the plan is going to be.  Monday passed and no phone call and no email back.  Tuesday morning I kept checking my phone but by 12 o’clock – still no phone call so I decided to take a nap.  When I woke up around 2, there were 3 missed calls: one from Kaiser Riverside, one from Kaiser Ontario and one from Kaiser Los Angeles.

I can’t believe I slept through 3 missed calls…it has to be really important if all three are trying to get to me….

If you have Kaiser medical insurance, then you know how awful it is to try to get a hold of your doctor.  They make you call an 800-number only to have to jump through 5 levels of automated menus to reach a phone operator who sends an electronic message to whoever you are trying to reach and then tells you that you have to wait for a call back in the next 48 hours….UGH.  When I finally got a hold of the doctors office, I was told I needed to schedule a consult with radiation.

-No. No. No. Radiation is not an option.  Can you please check the notes from Dr. Farol? He specifically stated no radiation so why are scheduling me for a consult?!?

-We’re sorry Mrs. Barron but that’s what your file says.  You have to call radiation/oncology to see why you are being referred. 

-Can I please speak to Dr. Jang?

-No. Mrs. Barron – you HAVE to call radiology/oncology.

So again, I jump through the same 5 levels of automated menus and finally get to appointment scheduler in radiology/oncology and have to explain my case all over again…

-I’m sorry Mrs. Barron but I can’t explain to your why you are being referred.  You have to speak to Dr. Jang.

– I just spoke with Dr. Jang’s office and they said to call you, so can you please let me know why I’m being referred?

-No Mrs. Barron you’ll have to call Dr. Farol’s office then…

I call Dr. Farol’s office only to have the nurse tell me that she is going to send a message to Dr. Farol to call me back…so I wait for another 30 minutes before I reached my limit.  I remembered that I had the direct number to the Dr. Farol’s Stem Cell Patient Coordinator, Pacita – and I called her to get to the bottom of everything.

-Oh hey Mrs. Barron, I was just about to call you! Dr. Farol just sent you an email, but since you are on the phone….your biopsy results came back and it is negative.

-I’m sorry….what? What did you just say?

-We are referring you for a radiation consult Mrs. Barron.  The biopsy was negative. YAY!

-I’m sorry…what? What did you just say?

-Mrs. Barron….this is a good thing.  The tumor is dead…you are in partial remission.  Radiology/oncology is going to call you to schedule a consult.  You don’t need the stem cell treatment.  Check your email!

The email from Dr. Farol was much more technical, but confirmed my earlier phone conversation.  Dr. Farol was taken aback by the results but wished me well in my future recovery.

That’s it? No more fighting?  No more having to gear up for the next wave?  Are you sure?  Are you reading the results right?  Are you sure you have the right file in front of you?  We had mentally been preparing ourselves for more chemo, hospitals and more stress…we were ready to fight and go to battle….and in a blink of an eye…

GEORGE IS DEAD.
I’M IN PARTIAL REMISSION.

NO MORE CHEMO.
NO CITY OF HOPE.
NO STEM CELL THERAPY.
GEORGE IS DEAD.

Its not so easy to for me to describe my emotions between Tuesday and today.  I think because I have spent the last 6 months fighting, its hard for me to snap out of fight mode.  We shared the news with our Pastor and his wife first, then our home group on Tuesday night.  I spent most of Wednesday trying to switch gears from fight mode to recovery mode and decided not to post anything on the blog until we had a chance to share with our family in person.

Turns out that being in Cancer Limbo in the last month and hitting all the delays was God working on His timeline not ours…to be able to get the results the week of Thanksgiving and then to be told right before that I’m in remission…so that I can truly understand the meaning of giving thanks. I decided early this morning that I just need to spend today reflecting on the true meaning of thankfulness.  I can think about the next steps tomorrow, but today I can be grateful for answered prayers….

ItWillBeYours

 

 

Cancer Limbo

Day 175, Saturday, November 18, 2017

If you know me on a personal level, you will know that I am a planner…I love structure and routine…I still have an old fashioned paper planner in my purse, one on my desk at work and a few at home…I don’t care for using my phone to plan things or Google calender…I hate them…I need pen to paper and old-school counting on an actual paper calendar.

(Side note: if you ever want to see me geek out, bring me to Staples or any stationary store and I will show you the level of planner nerd that I am…)

The last month has been hard…I mean chemo alone is hard…this is a different hard.  While its nice to have a much needed break from all the poking and prodding and nausea – it sort of sucks to be sitting around waiting and not knowing what is going to happen next.  After my appointment in LA, Dr. Farol wanted me to get a PET scan and another biopsy.  Right after we got done with that appointment, Tim took me out to lunch and being the planner I am, I took out my paper planner and started mapping out my treatment…

OK, so if the PET scan happens here..then the biopsy will happen the following Tuesday..
Results will come in a week after and worst-case I’ll start all the pre-op testing on this week..

Then I’ll start chemo on this week and I should be done with cycle one right before Thanksgiving…

So today is Saturday, November 18 and the biopsy just happened on Thursday….some of you will never quite understand how infuriating it is to not be on schedule and on track for a Type A…The PET scan happened on November 3rd and the biopsy was scheduled for the following Tuesday, the 7th…but on the day of the biopsy we showed up to Kaiser and ran into a…let’s call it a snag… Dr. Bosu, the radiologist at Kaiser Riverside said that the PET scan results had already come in…

-The mediastinal mass shows a decrease in volume however I am still seeing metabolic activity Mrs. Barron…the placement of the tumor poses a significant risk of puncture…

-English Doc…English…please….

-Oh, sorry, so it shrank…but its still alive…and its good that its shrinking but it makes it a lot harder to get a sample…your tumor is sitting right on your aorta and the space I have to go in is right between two ribs and next to two major arteries…

George has gotten smaller…*drumroll please*…we are officially down to 4cm from the original size of 11 cm…that’s fan-freaking-tastic, right?! I wish it was down to zero but George is a stubborn little sucker which means there’s a little bit to go…

So there I am sitting with Dr. Bosu and the nurse when from the corner of my eye I see Tim’s look of worry…

Tim: So if the PET scan is positive, why do we still have to do the biopsy?

Dr. Bosu: Well because…actually…why do we have to? That’s a good question…

Me: Um, I’m ready to go…so….

Dr. Bosu: Hold on…I’m going to call the LA doctor to confirm…

No biopsy on the 7th…Since Dr. Bosu couldn’t get a hold of Dr. Farol, we [insert sarcastic tone here] decided to postpone until we could hear back from Dr. Farol.  Turns out we still needed to the biopsy since the City of Hope team wants to be absolutely sure that we are dealing with an active tumor before going forward with the stem cell procedure.  PET scans can sometimes give a false positive especially after chemo since any inflammation can be read as positive activity.

Which means I should have done it on the 7th and not have been delayed…but I digress…

So the biopsy got pushed to the 16th which was last Thursday.  Biopsies are no fun!  Lung needle biopsies are really time consuming and scarier since you are awake for the entire procedure and get to watch while they stick a really large needle into your chest.  They place you under a CT machine so they can use the images to guide the needle.  I’ve never been stung by a bee, but I would assume that its similar to how it felt when they used the first numbing needle they used on me…it stung for 3-5 seconds and then slowly started to burn for 10-15 seconds…and then all I could feel is pressure…kind of like when you have really bad heartburn and the full feeling in your chest doesn’t go away.   They took three samples for the biopsy and said that results should be back next week.  Right now, my chest feels like I got kicked by a donkey and it hurts to take a deep breath in.  No heavy lifting and no exercising for at least a week….which means no jui jitsu training….LAME SAUCE!!!

More waiting until we get the results from the biopsy….and since next week is Thanksgiving…those might not come in until the week after…

Its really annoying for me because I want to be able to plan things for the holidays but I know that in an instant those plans can change depending on where I am going to be in the treatment…

Cancer Limbo…that’s what Tim calls it…which is a pretty good name for it…

The weeks of waiting created an opportunity for the Enemy to mess with both of us….individually with our own insecurities and as a couple…we slipped into a funk…usually its just one that goes through it and the other one can help reign the other one back in…but what happens when both of you are down?

This whole experience isn’t just happening to me….Tim isn’t just here to take me to my appointments…this affects him too…not in the same way, but sometimes even more challenging for him than it is for me.

Tim is a fixer – he sees a problem and wants to fix it right away.  Cancer is not something you can fix.  When we went through Tim’s cancer battle, we had no kids, no careers, no other responsibilities except for taking care of each other in our little one-bedroom apartment in Alameda. 13 years later, we both have careers, three kids, a mortgage….life doesn’t get to stop because cancer showed up…its overwhelming…if we didn’t have family to support us (in all its forms: blood, church, jiu jitsu, work, etc.) we would be drowning.

Its so much harder to snap out of it…so God sent in His A-team.

On the Tuesday before my biopsy, we were blessed to have our church elders over to pray for us…One of our pastors recited this verse to us:

notonyourown

They didn’t just pray for me…they prayed over Tim too.  God’s way of snapping us back into focus.  We can’t lean on our own understanding because we have no idea what God has in store for either of us because of this cancer journey…its not for us to understand..its for us to trust and believe that He has moved, is moving, and is going to do something through this…and to obey..

A really close and dear friend to us, Ted,  gave us this illustration: what’s the difference between a thermometer and a thermostat?

The thermometer reads the temperature and the thermostat controls the temperature.  As parents, Tim and I set the temperature in our house figuratively speaking…the kids can feel if we are cold and depressed and they also feel when we are warm and loving…we have a choice to let our situation dictate how we are going to be…or we can take control and tell the Enemy to get out.  Our kids will learn to handle their own adversity by seeing how we are handling ourselves through this.

Today I realized that Cancer Limbo is yet another lesson that He is giving me….

Are you going to worry in the waiting or find delight in the delays?

Worrying doesn’t fix anything…it tells God that we don’t believe that He is in control of every situation and that we don’t believe that He is big enough, strong enough, loving enough to handle what we are handing over…I’d much rather hand it to Him and find ways to delight in the delays…where I can be grateful that I have some down time and a little bit more energy to cook Saturday morning breakfast like I used to…to have time now to decorate the house for Christmas because I’m not laid out on the couch from treatment…I can choose to be bitter or I can choose to be better because of the situation…to sit back even just for a little bit even if the plan turns out that I need to have more treatment and just enjoy the “crazy” of the Christmas season that people take for granted…

“In the middle of my little mess
I forget how big I’m blessed…”
-Francesca Battistelli, “This is the Stuff”