Wednesday, December 6, 2017

December update

Many of you have asked me to update the blog... and I see now that it has been a few weeks. I guess I just have felt like not much has changed in terms of news, so there hasn't been much to say... but I definitely need the prayer covering and feel like this is the best way to keep up on those targeted prayer requests, so an update it is :).

I just finished my 4th infusion of this 2nd round of chemo... 8 more to go. I go each week (usually Mondays) for the chemo called Taxol (12 total of this kind). Then every third week, they cocktail it with the chemo called Carboplatin (4 total of this kind). The simple terms that my dr used to explain things to me were that the Taxol is the clean up crew from the original pathology of my tumor (the hormone positive stuff) and the Carboplatin is the attack guns for the new pathology that came from my tumor out of surgery (the triple negative stuff). After chemo, I will be referred to a radiation doctor to determine my schedule and needs for that, but they said standard procedure is 6 weeks--but on hold there till I get closer to the end of January and finish chemo (last infusion is scheduled for January 29). 

So far, this cocktail of chemo hasn't been as bad as the AC chemo was for me. The side effects are a bit different, and they have started--bone and joint pain, restless leg, nose bleeds, dry mouth and mouth sores, insomnia, 'chemo brain', and the carbo brings nausea on, too. I've also started losing my hair again (being off chemo for 8 weeks around surgery brought back quite the head of fuzz!). They say it will get harder as it builds up more, but I am so thankful in the meantime that it's not as bad. So far my blood counts haven't been too low, I have been able to start Physical Therapy to help with arm and shoulder mobility from surgery, I have gone to work a few days, I was able to enjoy Thanksgiving, was able to decorate the house for Christmas and even am mostly done with Christmas shopping (thank you, Amazon!). 

I think one of my specific prayer requests would be to heap portions of blessing on my mom and Bill, who are giving their lives to us right now. They are living here (in their trailer), and have been since Oct 15th just before surgery, and taking care of all our needs--cooking, driving, kid stuff, taking me to appointments, working on our house, honey-do-lists, everything--so that I can focus on healing and what I can do and Brian can take care of work and do what he needs to do. What a gift. It's also been awesome to have them around for the kids--just getting to spend time with these wonderful grandparents that we usually don't get to see very much--has been so wonderful.

Another specific prayer request would be for me in this chemo process, not only that it is effective and I can handle it well, but I have noticed I've developed a 'Sunday anxiety' issue. Having chemo each Monday, I feel like Sundays are this day of dread heading into it and I get nauseous, foggy headed, and super emotional. I haven't been able to go to church because of the immunity factors, and as much as I miss my friends and community there- I don't really want to see anyone on Sundays because of the way I'm feeling. When I'm in that state, all I want to do is take a long hot shower and lay in my bed and do nothing... which is not helpful in beating any kind of anxiety... just exacerbates it! So... I would love prayer to overcome this and choose to take that time (while my family is at church) to listen to the previous weeks sermon online, read my bible and take in God's words and truth that keep me connected to him and my amazing church community. That seems like the thing to do to help beat that funky feeling, while still having that time on my own to process and gear up for that infusion. So, the prayer there is that I will choose the thing I know is good for my heart and soul, even when I don't feel like it. It's like waking up early for exercise (which is another thing I need to do--exercise!)--hard to do, but know it's what you need and feel so much better when you do. Yep... that is what needs to happen...

Otherwise, prayers for my kids, my husband, my doctors, the traffic to and from Stanford, our cars to stay good, continued healing from surgery, the house remodel process (lots of work happening out in the garage area, HVAC and electrical in the next couple of weeks), and as of today... my family in Ventura and the raging fire down there. Thank you all so much for your continued support, prayers, gifts, food and love... just love pouring down on us.

Tuesday, November 21, 2017

Complicated Emotions--my 4am thoughts

Inside Out by Disney Pixar has got to be one of my absolute favorite movies (and my kids watched it with me last week on our rainy day!) primarily because of the brilliance of the emotional intelligence it teaches behind the entertainment. They explain such complex emotions, what makes you you, and how your brain makes sense of life in such a simple way. Ethan was able to use this movie to explain what's been going on at school with a classmate--"He's got no Honesty Island, mom, he lies all the time." It has also helped me as I try to wrap my head around the complicated and layered emotions that this cancer diagnosis has been for me and my family (and all those I love)--the trials that bring the blessings, and creating lasting impressions of mixed emotions on my heart and soul.

Trial: more chemo, 2 infusions down, 10 more to go (weekly)
Blessing: time and connection with my cousins who live close to my appointments, this type doesn't seem as harsh as the last kind I had so far and don't have as much nausea--thank you, Lord!

Trial: needing help to maintain life for our children and home
Blessing: so many family and friends providing... getting to spend time with my family, and everyone finding out where our new house is when bringing meals or coming for a visit!

Trial: missing work (which I actually love and really miss!)
Blessing: being around home (and getting to watch those movies with my kids on a school day!), being able to work from home when I can, and not being so busy with life (and wondering how I actually used to do all of this?!?!?)

Trial: insomnia by chemo
Blessing: quiet time alone, today it was getting all these thoughts out and then reading for a couple hours (trying to get sleepy, to no avail) to finish an awesome book, Wonder, so now I can go see the movie that just came out! And then a couple good cups of coffee!!!
Trial: going through this terrible disease and treatment
Blessing: reconnecting with friends and making new ones (including lots of random people), being able to walk through this same journey with a couple friends going through it now, too, being aware of how much I am loved and cared for by so many, especially my Lord. 

There are so many more, but this encompasses the gist... I am (choosing) to be thankful for the blessings in this journey. It gives me so much hope and peace. If I focus on the trials, I drown. And there are so many things to be grateful for and so many ways it could be worse. Thank you, Lord, in this season of Thanksgiving, for the bounty your love provides... and how it spills out through others onto me. 💗

Saturday, November 18, 2017

Just Be Held

I heard a new (to me) song today while driving alone (yeah... fewer pain meds these days means I can drive!) and I didn't even catch the beginning... but I loved it. It's by Casting Crowns and it's called Just Be Held. The lyrics hit me so close, and so powerfully, I just had to share so I can remember God's words to me today...

Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on
And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go
So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held
If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will
And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands
So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held
Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go
So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
(Stop holding on and just be held)
Just be held, just be held
Just be held, just be held
Written by John Mark Hall, Matthew West, Bernie Herms • Copyright © Sony/ATV Music Publishing LLC, Universal Music Publishing Group, Capitol Christian Music Group

Wednesday, November 8, 2017

The Nitty Gritty

It's all good to focus on the positive and just report the wonderful things, but there is also a reality that is not so fortunate... it is cancer after all. I feel like I have finally come to grips with what the Tumor Board's decision for my treatment will be and understand it enough to report out.

Surgery recovery is going well... doctors are all positive about how things are healing up. I did develop a seroma (pocket of fluid, apparently common when lymph nodes get removed) in my left armpit area that was super uncomfortable (it felt like an egg under my arm). I was able to stay local to get that drained yesterday (40cc's of fluid!) and it was almost instant relief. Hopefully it will not refill... once created, the body can just see that as a place to collect fluid. I covet your prayers for that and for continued healing and comfort in regards to the surgical healing overall. I would love to be off of pain meds before I start back on anti-nausea meds...

While we were originally encouraged that only 1% of the cells in the tumor from the removed breast tissue were cancerous, it is now known that the remaining 1% is the 'worst' kind of breast cancer cells--called 'triple negative.' Originally, my cancer was hormone positive and HER2 negative, which means is was aggressive (the HER2- piece), but that it would respond well to hormone therapies and such. From, the triple negative breast cancer (1) is often more aggressive than other types and (2) isn’t a good candidate for treatments such as hormonal therapy and Herceptin. But it can be treated with chemotherapy and radiation therapy, so that is what is on the schedule for me next. Still very thankful that pre-surgery chemo was very effective, but DARN THAT 1%!!!

I start chemo again on Nov 14, with a weekly schedule of Taxol cocktail-ed with 4 doses of Carboplatin each 21 days, for 12 weeks. I will have a port put in early on the 14th so I don't have to be poked with the IV each week and ruin all my veins with that nasty stuff and all the blood draws each week, and that port will stay in me until I'm done with chemo treatments. After chemo, I will be getting radiation, which my oncologist will refer me to the radiation dr to set up, but said it's usually 30 treatments within a 6 week period (read: each weekday for 6 weeks, yikes!). The good news is that my doctor is still talking 'cure' and not just subdue. 

So... we will continue. I never really felt right calling this a 'fight' before (all the 'warrior' and 'fight like a girl' things), but now I get it. I'm in a war against cancer for my life, and this daily battle to trust God with this, to willingly go in and get stuck with needles and inject (what seems like) poison into my veins, and to face the illness and pain that come with all of the procedures and medicine--these are battles I must face. Isaiah 12:2 was an encouragement today from a friend that puts to words what my heart is feeling:

Image result for isaiah 12:2

Where HOPE reigns,

Sunday, November 5, 2017

God Moments

  • Soccer mom prior to surgery--Our daughter's had been on the same team all season, but in a God moment, she reached out to me and asked, "you're in treatment for breast cancer, too?" I had been struggling to wrap my head around surgery, what my doctors were saying to expect in recovery and the reality of what was coming. This angel mom had the same surgeon, same hospital, same procedure, and was willing to share the good, bad and ugly, let me ask all my questions and shared from her heart what she wished she would have known going in. She was a literal answer to prayer I couldn't have even known I needed.
  • Vincent, the awesome pre-op nurse who made sure I was comfortable and taken care of while my surgery was delayed, and also advised us on how to ask for certain areas for recovery overnight while in the hospital so that I could be most comfortable and well cared for.
  • Seeing Candice and Justin at Stanford as we were all in between appointments, getting to share stories, get updates and encourage each other that God's got both of us in His hands. Her smile and positivity was so refreshing and it was great to hug each other between these tough appointments.
  • The Habitat for Humanity Restore having a french door and a brand new Pella window that will work perfectly for our playroom plans at a fraction of the price of new materials. Also scored some patio lounge chairs for a great deal!
I don't think the valets at Stanford were too excited to see our truck pull up for parking service!
  • While at the Restore, in the restroom, a woman who is a breast cancer survivor struck up a conversation with me. She was diagnosed when she was 42, like me, and now 10 years later she is loving life and her newly reconstructed boobs (which she showed to me without hesitation--or really even me asking). This was oddly encouraging to me, because what I have going on now looks really, really horrible--and hers were great! I have heard people are really open about this kind of thing, but this was a first for me to experience it, and I thank the Lord that it was encouraging rather than just weird!
  • Dr. Lee's (my plastic surgeon) nurse practitioner suggesting that we connect with Dr. Reid in Sonora, who actually studied with Dr. Lee at some point, to do the quick check ups and post-surgery stuff locally instead of driving down to the bay area for a 10 minute appointment. I had my first appointment with Dr. Reid last week and she is amazing! I am so glad to have someone local that will be a good resource for me and save us some time and gas for quick check-ups.
  • The Sonora Police Department asking Brian and his class last spring to design pink inserts to raise money during October for breast cancer awareness month. Of course we had no idea of my own diagnosis at that time, and the officers were very sympathetic when Brian told them what was going on when he dropped the inserts off at the beginning of October. They stopped by Brian's classroom today (10/30/17) with a beautiful orchid plant and a card saying that they had donated all the money raised this year from those badge inserts to Susan B. Komen research on my behalf. Just awesome, and humbling, and awesome. 

  • Puzzles, movies and down time with the kids and my mom. 

  • Thankful that I felt well enough to walk around trick-or-treating with my kids and our huge crew this year!
  • Another gift basket from my amazingly generous Columbia College family, delicious dinners from so many friends, visits and lunches with dear ones. My mom and Dad2 giving their lives to us right now in our time of need. Prayers, texts, facebook messages and posts, calls, cards in the mail (yes, real, written cards!!!), flowers, food, and sooo sooo much encouragement. 
So many things to be thankful for, to live for, and to love 💗💗💗

Monday, October 30, 2017

Journal Entry - 10/30/17

So, I watched a chick flick, Safe Haven, yesterday while the family was enjoying Fall Family Fun Night at church. I thought it would be a good time to enjoy a sappy Nicholas Sparks movie, right? The main premise was a girl getting away from an abusive husband, but the unexpected angle of the movie that rocked me was that the guy she fell in love with lost his wife to cancer years before. The wife had written lots of letters before she died--for her kids mostly on those big things in life... their 18th birthday, wedding day, etc. The emotion of all that didn't hit me until the very end of the movie when the man gives a letter to the new girl he loves addressed 'To Her,' which was a letter his wife had left for the girl her husband would go on to love. I bawled. It was so well written and said would I would love to have the courage to say myself, but...

I DON'T WANT TO WRITE LETTERS LIKE THOSE. I want to be with my kids on those big events and milestones. I want my love to grow old with Brian. And that is why I am going through all of this.

Not everyone gets a chance to fight. Like the mom in this movie. Like those shot in Las Vegas or who are fatally injured in a car accident, or in so many ways that we lose our loved ones. Lots of pain and nausea and sickness for me to wade through, but I get a HOPE to be here with my family and watch my kids grow up, to help Brian pick paint colors for our new house, and write a graduate school reference letter for one of my amazing students.

Thank you, Lord, for HOPE. Thank you for the purpose you have given me and that I have a reason for the HOPE that is within. It gives me the will to endure, to suck it up, to keep going, and to keep moving forward (a line from Meet the Robinson's--one of my favs--and much more uplifting than Safe Haven!!!). 

Friday, October 27, 2017

Post Surgery Update

It's taken me much longer than I thought it would to put words together enough to update here. I don't know why, other than the pain med fog I've been in or that I just haven't wanted to do much of anything, but I have appreciated the individual texts, visits and questions in the meantime checking in on me and making me (and my family) feel very loved and supported.

I had my post op appts this week, so we know now beyond 'surgery went well'... the short version is that pathology came back 99% clear of cancer cells (a good result for them is 95%--so we beat that!). Also, out of the 8 lymph nodes they took out and tested, 6 were completely clear and 2 were cleared by 'evidence of treatment' (again, the chemo worked!). My doctors are taking the pathology (all the slides and evidence from surgery) to the 'Tumor Board,' which happens today, and all the smart people together in the same room come up with the best treatment plan moving forward. My oncologist has already anticipated another round of chemo (darn that 1%) called Taxol, which is a weekly IV dose but apparently isn't as harsh as the first kind I received, and that is scheduled to start Nov 14th. The tumor board is going to be looking at whether or not radiation will be recommended after that... so specific prayer request is that it will not be!

My ovaries and tubes are still intact--short version is that the 3rd surgeon responsible for that part had the flu. The silver lining is menopause is delayed for now... but we'll just schedule that procedure with the 2nd phase of breast reconstruction after everything else is done.

Which brings me to recovery... not going to lie... this hurts. It's been a week and a few days and I finally am starting to feel like a truck is not constantly resting on my chest. The pain meds have been working well and I have been sleeping a lot. These last few days, I've been able to back off of them, intermixing tylenol instead of just the big guns, which is good because it helps me not be so out of it, as well as means that I'm not in such pain that we can adjust things down. These drains they put in are a total pain--literally they hurt but they are so annoying! I was able to get 2 of the 4 out while I was down there on Wed... hoping these others can come out soon. A praise is that my surgeon provided a referral to one up here in Sonora that can help take these drains out and do a couple of the minor check ups in between now and when I go back down to start chemo. Prayer requests for that would be that all the orders come through and I can get scheduled easily for next week.

Other than that, I am definitely appreciating my husband and all the time he is taking from work to be with me in hospitals and doctor offices, my mom and Dad2's help around here in keeping the house and the kids functioning, as well as Bill doing a ton of work in the garages for Brian! The meals and the friends and gifts have been so encouraging and supportive... we are so thankful. I'm pretty sure I mention this almost every time I post something, but I can literally feel the prayers and support you all are providing in terms of the peace from God that calms my heart and mind. There have been so many 'God moments' and answers to prayers in this process that I look forward to sharing in a future post... but now, it's time for a nap. :)

Love to you all,