Thursday, August 31, 2017

Just got round 3 and it's going well!

On Day 3 post 3 chemo infusion... so thought a blog update would serve as a great update to what is going on since I'm in-house for the next few days.

First of all, last week was full of blessings... kids first week of school, Columbia College back to life and Brian back to school with a good group of students!

Also, my dad came for a visit last weekend and helped the kids get their back to school shopping done (yea! I didn't have to deal with Walmart!!!), attend 1st soccer games, and we had a good visit, the first since my diagnosis. AND... my mom is here now with us to help us through these last two rounds of chemo. Helping with school, soccer, treatments and sickness... she has come to help us keep things regular for the kids and keep up on life in general, as well as either attend appointments with me or stay with the kids while Brian and I go. Such blessings from my wonderful parents (and their supportive spouses that let them come!).

Mom driving us back from Stanford through the bay area traffic
On to the medical stuff... had an appointment on Tuesday with my oncologist who was totally pleased with the progress the chemo is making. This is the first time that he hasn't taken a physical measurement of the mass because he said it's too mushy to measure... which is a great sign of it breaking down! He also verified again that no lymph nodes are swollen, so that is a great sign that the cancer is being contained. I received my 3rd round of chemo, along with a dose of Neulasta, which is a white blood cell count booster (that apparently costs as much as a new Tesla--hope insurance picks that up!!!), because again, my numbers were lower than they wanted them to be. Hopefully this will help build me up back higher so that I can recover stronger from dose #4 of chemo and be ready for surgery. I have a surgery consult on Sept 18, the day before my last chemo dose (of this round), with anticipation of surgery 4 weeks after that--so surgery will likely be sometime mid-October.

As we approach surgery, a few weeks ago I was given the news that I tested positive for the BRCA 2 gene mutation, which is likely the cause of my breast cancer. This changes treatment options for me, as well as increases the likelihood of me getting another related cancer--either breast or ovarian--(like up to 80%). So, I will still consult with my surgeon for specifics, but knowing that I have to get a mastectomy anyway, I will likely do a bilateral mastectomy, as well as remove my ovaries/tubes. Not sure how it's all going to go down, but again, I have the surgery consult on Sept 18 and will hopefully know more then. In terms of the BRCA genetics, there is a family history on my dad's side of the family with my grandmother and her mother (they didn't know about BRCA genes back then), and on my mom's side I have a cousin who had breast cancer (but tested negative for BRCA). So, I still have to meet with the genetics counselor on what that all means, but will communicate more as I know more, especially to my amazing family members.

Now what... get through this next few days of chemo icky. Enjoy my mom being here and trying to stay cool in this terrible heat wave. Pray for Texas and the mass devastation there and know there are so many who need HOPE in this crazy messed up world. Maybe work a bit over the next few weeks when I feel good.

So many of you have been asking how to help and we thank you so much! With my mom here, we have put a halt on the meal train stuff and the big needs, since she is here and is such a big help. In her words, "what else am I going to do at your house if it's not cooking, shopping, cleaning, etc.?" So... you'll notice the dates are pretty far out for the meal train... and that is for after she leaves and we're dealing with the 4th round of chemo and prep for surgery. Surgery will be another whole beast in itself. Then there will be more treatment after that... so this is a loooonnnnnggggg haul of help that will be needed. So, we definitely appreciate your continued prayers and offers!

The scripture that I read this morning...
So because our hope is set on what is yet to be seen, we patiently keep on waiting for its fulfilment. Rom 8:25   Richard Rohr writes, “IF YOU ARE NOT trained in how to hold anxiety, how to live with ambiguity, how to entrust and wait—you will run—or more likely you will “explain.” Not necessarily a true explanation, but any explanation is better than scary liminal space. Anything to flee from this terrible “cloud of unknowing.”  CLICK THE IMAGE TO KEEP READING

Sunday, August 20, 2017

From Brian

As Brian started back at school this last week with all the teacher meeting days (school starts for him and the kids on Tues), he had lots of conversations about our summer and felt the need to send an email to his fellow staff members about my health situation. It got relayed to me and it was actually really good for me to read, through his words, what's been going on around here. I'm obviously living it, but it's good to see it from his perspective and hear how he communicates his heart. I got his permission to share it here as well, as a way of an update in the middle of round 2--so... guest post by Brian Miller 💓

Hi all,

Sorry to anyone who asked me how my summer was ... and then was surprised hear that Kirsten was diagnosed with breast cancer. So I thought that I would let everyone know what is going on.  My wife has breast cancer. It is a pretty aggressive form. We were not able to catch it super early. It is in the lymph-nodes but has not metastasized anywhere else. She has had two treatments of chemo at Stanford and is responding well to the treatment.  The mass shrunk after the first treatment and our oncologist was pleased by that. She has two more treatments scheduled (one every three weeks) before a re-evaluation and probably surgery and then maybe more chemo at that point.

Any of you who know her know that she is positive, strong and is a rock star... she loves her job and was actually at work today! She is upbeat and we are both confident that she will be OK. 

I am doing well (thank you to those who asked).

The kids are well too. They all seem to be themselves and doing their normal things. We are trying to keep life as normal as possible around the house.

People have asked if they can help.  I like hugs. Kirsten does too. We will take all they prayer and positive thoughts we can get.  If you want to take a more active roll there is a meal train that has been set up for us... I will get that info to you later... cant remember the website. The only problem with joining the meal train is that we are trying to go hippie dippy organic which we have discovered is tricky at first. Signing up for that is not for the faint of heart.

So now when you ask me how I am doing I won't feel like I have to explain all of this before I just let you know if its a good day or a bad one.

Thank you all,
Brian Miller

Wednesday, August 9, 2017

Good news from Dr--the chemo is working!

Let's start with the good news. I am so thankful. We got to go to Avila on our annual family vacation with family... and to feel good for this time was so great! Beach time, play time, even a dinner at Jocko's with our great friends, Steve and Lisa. Day in Morro Bay. Then drove up to San Jose on Mon night and got to stay with my cousins Staci and Matt, and their sweet babies, before my appointments on Tues morning.

Blood work, then appt with Dr. Massarweh, who was very pleased with my response to this powerful AC chemo cocktail. On his physical exam, the mass measured 6x7cm, which is down from 9x8!!! Also, he said that the lymph nodes that were felt clearly in our last appt are now no longer defined! He said that typically he would see some softening or something, but this was better than expected results for the first round--the chemo is WORKING! Praise the Lord... and keep those prayers coming!

My white blood cell counts were lower than expected, so my chemo infusion was delayed a bit until my nurse received dr. approval to continue. During that time, I got to meet with a nutritionist who was very helpful in looking at my blood work, eating habits, and knowing chemo side effects and immune building techniques. She wants me on a regime of 80-90 grams of protein a day (an egg is 7 grams) to help build those white blood cells (and other things I tested low in this time)--that is a lot of protein!!!

Anyway, chemo #2 is done and my handsome husband got us back to the beach safely. Much thanks to my awesome sis-in-law, Jennifer, for keeping our kiddos overnight and giving them a super fun beach day while we were away. 💗 Today has been not terrible, the nausea meds are working well and despite a few hot flashes (normal side effect of the chemo blocking hormones), I've felt okay and enjoyed the ocean view room and air conditioning!

However... I had finally had it with my hair. Chunks were coming out and hair was just falling out all over the place. The little hair I still had on my head looked so ratty and thin, it was just sad. So, today, after the fam went down to the beach, I took the shaver to my head and now it's gone. I won't razor it down right away because I read that can cause ingrown hairs. I was surprised to see how much blank space was there from all those chunks coming out, or maybe I wasn't. It is just surprising to see myself bald. But honestly, my head feels so much better (it had been feeling bruised and itchy for 2 weeks) and to not deal with the hair falling all day long was so much better. So... now to embrace this new season (and my new hats!).

Saturday, August 5, 2017

My girls... and my hair.

I have the most amazing friends... I really, really do.

My sweet bible study girls have come around our family since my diagnosis in so many different ways. They have hosted a prayer night complete with floating candles symbolizing hope and faith and sticky notes with every prayer and praise I mentioned while updating everyone, and everyone took the multitudes of notes to keep praying for the specific things we need.

They used one of our Bible study Weds nights together to do a group effort on freezer meals for my family (we got 5 in one night!). They have organized a meal train for our family to help us, especially around my infusion dates when I will be down, to help our family eat well and stress less (the link is here on my blog under the 'about me' picture). And two nights ago, they hosted a 'Hat & Scarf Party' (with some other special friends in attendance, too), where I was honored and gifted with beautiful hats, scarves, cards, and some other fun and meaningful gifts from their

And just in time, too... as my hair has officially started to fall out. Today, it's really bad... chunks of hair when I run my hands through. I've been dreading this part. Not ready to shave it down yet, but I have a feeling that, if it lasts that long, when I go for my next infusion on Tues, that will be the kicker. I'm so thankful to have these beautiful head coverings that I'm excited to use to buffer the blow. It's really sad.

I don't have any pictures of my hat party because I was truly in the moment and pretty overwhelmed... but I will remember it forever. The love and the hope these girls have for me is beautiful, and I am so blessed.