Updates! (finally)

Oh my goodness, I am terrible blogger.  I really thought I had updated this in December but... I guess I didn't?  December was a pretty yucky chemo month for me as I finished up AC chemo doses 3 and 4.  So I wasn't very energetic to do anything besides work part time and be present with my family.  Then you add in the holidays and essentially December was a month of ...  chaos mixed with nausea mixed with sleeping?

OOOooh exciting - my daily ritual to keep nausea "at bay"

So now halfway into January I am all finished with the AC chemo.  4 doses over 8 weeks.   Wahoo! It was a rough go-round for me with the side effects, especially nausea.  And somehow I also managed to catch a virus from my children (surprise surprise), which held me down for a few solid weeks with a minor fever  and the usual sore throat/cough/sneeze/snot routine.  It is finally (4 weeks later) reduced to minor sniffles that I imagine I'll keep with me until spring allergy season :)  I am thankful to be on the mend from the virus, even if the snot is annoying.

In and around all the medical appointments, we were able to celebrate Christmas with our families!  Not hosting was a new and different experience for us as we typically love to host Thanksgiving, Christmas, New Years, and any and all holidays.  I was so thankful that others hosted those events and let me be a relaxed guest in their homes :)   I found that I did sort of miss planning a menu and cooking and serving and sharing our home with other folks, so I'm optimistic we'll be up to that next year.  Here's a few holiday photos (totally non-edited with terrible lighting).

Forest had the sweetest ukulele, song, and poetry concert at Mountain Springs.

Johnny was the concert photographer.

Santa brought the boys a large stack of games this year :)

What do my eyes behold - two children playing nicely together?  A Christmas miracle!

Cozy at my mamma's for Christmas

We also survived Steve's fire academy!  He officially graduated from academy on December 21st over in Marysville.  We were joined by many of Steve's family and friends to celebrate over there, which was so encouraging.  Steve was chosen by his class to be the keynote class speaker and did a great job speaking to the crowd.  After that were a few more weeks of Steve being gone during the week for department specific training, but Steve is now on his "normal" schedule and rotation, and is home for larger chunks of time, wahoo!

Last Friday I started a new chemo - Taxol.  This one I'll be getting weekly for 12 weeks - so 1 down, 11 to go.  Since it's weekly, mentally, I think it will just go a little faster.  At least I hope so!  So far, the side effects have been slightly different.  I still have the tired/weariness, I am still struggling with insomnia, and I think I have carry-over hand rash from the AC with ITCHY SWOLLEN FINGER SAUSAGES...  But I do NOT have nausea.  I feel like a whole new woman.  I can deal with tired and needing more sleep - most parents function on that for a solid 18-20 years anyway, right?  But I had really struggled with the nausea, so I am pleased as punch to know I might feel a little more normal from here on out.

I can never end a post without saying how grateful I am to my support group of friends and family that are getting us through this.  From meals brought by so many wonderful folks (too many to even name here but I love you all so much!!), to care packages filled with books to read (thanks Marianne!) or supplies to keep nausea at bay (Aunt Pam!), or gift baskets with activities for both me and the kids (Traci & Friends! City of Wenatchee friends! Perteet! Deanna!), and hats, scarves, cozy jammies & socks keeping me cozy, to cards (Aunt Chris I cherish each one! and Cathy M I laugh at yours!) and emails (Theresa I keep meaning to reply - yours are the BEST and so helpful to me!), phone calls (Joanna! TARA! Shannon!) to friends driving John to/from daycare (Michelle! Katie! Erin!), dear friends helping with bedtime and getting ready for school when I'm too tired (Jaimi! Jenny! Christie! Angie! Julie! Anne! Lois!), friends taking me to chemo (Katie! Molly! Jaimi!) and neighbors plowing our driveway and taking out my garbage when I forget (Haakon and Craig!)…  and that's just the physical support - I'm also surrounded by words of encouragement and affirmation, and daily prayer for my health and my family.  It's mind-blowing and I'm so grateful.

It's really all just further proof to me that my God is bigger than my troubles, and we are absolutely meant to live in community with one another.

Snuggle buds.

PVNT Rockin' Relay Race!  I loved watching Olaf's cape fly.

Forest's cape was flying too as he and coach Angie took off!

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On week ago Friday I got my first dose of AC (Adriamycin/Cytotoxin) chemotherapy at the infusion center in Wenatchee. The experience itself wasn't too bad.  Steven drove me so we got some nice time together.  Arrived at 0825, labs at 0830.  It was the first time they access my port in my chest, so I didn't have any idea what that would be like.  Since I still pretty much have no feeling in my chest, the big old needle connecting to my port didn't hurt at all, so that was a bonus.  After labs, we waited to see my oncologist.  When we chatted with Dr. J, she said all my lab/blood work looked good, and I was ready to go.  (I mean we talked more than that but this is the cliffs notes version because I'm super tired right now).

Accessing my port.  There is a giant needle stuck into it.

Back to the infusion room for a whole bunch of stuff through my port.  Including two big old red syringes of "red death" aka Adriamycin.  They made my mouth taste weird.  Somehow whenever I have an IV, I taste it, at least initially.  Kinda gross.  Anyway... infusion bonuses: Wifi worked and I was able to watch TV for a few hours, it was interesting to learn the process, and  I napped a little bit, I resisted eating all the bad for me cookies that I wanted, Steve's ex-coworker's wife was there too (hi Tina!) so I got to meet them and Steve got to speak his love language of diesel engine's to a friend for a while.

My view at the infusion center

Nurse B finishing up the syringe of red nasty crap.

Anyway, it went well and I was home recovering this week.  I don't feel good.  But I don't feel terrible... sort of like a hangover that won't go away, and somehow I could sleep for hours and hours and hours?  And my bones hurt from the Neulasta, which is helping my marrow go into overdrive production of white blood cells.  I think the only reason I don't feel 100% horrible is because Steve has been regulating my meds to help me with the nausea, among other things (you know like ummmm bowel issues).  Thanks hubs :)  Yesterday on Thanksgiving I actually felt pretty good.  We took a family walk in the snow, and I had the energy to re-arrange under my bathroom sink with a bunch of fun new soap product gifts I've received (thanks friends!).  Following a nap, we had a nice dinner next door at the Saugens with my momma too.  Low key, but just right :)  Unfortunately I'm paying for my "active" day today by waking up tired, nauseous and with a headache...  Time for a nap I guess.

If I'm being honest, I've also been a bit emotional and bummed. I'm so so so grateful for all your support, but man I just keep wishing no one had to alter their lives on my account.  I am just hopeful to pass along some of this amazing support I have to someone else in need someday.   And for now I will just keep doing this day to day to day, knowing that the joyful moments will keep on coming if I look for them!  Even if sometimes they only show up in hindsight, I know they are there, thanks be to God.

Three times I begged the Lord to make this suffering go away.  But He replied, "My gift of undeserved grace is all you need.  My power is strongest when you are weak." So if Christ keeps giving me his power, I will gladly brag about how weak I am.  Yes, I am glad to be weak or insulted or mistreated or to have troubles and sufferings, if it is for Christ.  Because when I am weak, I am strong.

2 Corinthians 12:8-10 (CEV)

attitudes lately and chemo plans

I am often struck by things I want to write about at inconvenient times - when I'm driving, while at work, when cooking dinner, while in Church, while about to fall asleep...  Recently I've composed posts in my head that I would have called "Rejoicing" and "Mourning" and "Chemo Plans" and "Moving Forward" but none of them made it out of my head on to the blog.  But now you have the gist of where my head and heart have been the last few weeks.

The thing I've been most scared of through this whole process is the great unknown.  I have spent my entire life and career being prepared for the future.  Recognizing that I can't control everything and it's too exhausting to try, I've still built in programs into how I work to ensure that deliverables are completed and projects carry on if I have to take some time off (vacations, maternity leave etc).  I've planned home life to ensure that kids can do their sports, legos, playdates etc that I can get help with rides, but I'm there at the end of every activities to ensure that dinner is eaten, showers are taken, and snuggles are obtained all around.  Surgery recovery has already shown me that I can't begin to expect how to plan for this whole cancer scenario and it is really hard for me, mentally...  I thought for sure I'd be ready to go two weeks after surgery, back to work 100%, but I'm not quire up to par three weeks out.  Sigh.  SO HOW DO I PLAN FOR CHEMO??  I can't.  It's the worst.  So I just have to trust God that it will all work out in the day-to-day.  In the meantime here are some current highs and lows and in-betweens:

Sometime during the surgery, it sounds like my long thoracic nerve got stretched (hopefully not cut).  As a result, my back muscles are not working correctly and my scapula is "winging" when I try to lift up my right arm.  Since the back muscle isn't engaging, if I lift my arm my neck muscles are the ones doing the work, so I'm trying to avoid that.  My OT and I are hoping that the nerve will repair itself, but for now I'm on a "no lifting" with my right arm plan.  Pain in the butt for a right armed person, you know?  I'm thankful for my OT in Wenatchee.  She has also been helping me learn massage techniques for lymphatic drainage of my right arm.  Since I am terrified of lymphedema, I like having these tools in my kit so that if it shows up, I can start treatment immediately.  She's also been very encouraging with the nerve stuff - and thinks that it's slowly improving, so I'm going with that.  On the positive side, my left arm is a champ, has full range of mobility, and only very minor swelling and pain.

I had a pretty down day yesterday.  I have been more joyful that not in these past few weeks so I guess it's natural to switch and have some time where I was mourning "Jennifer before cancer".  It was a GORGEOUS day in Plain, and I was home alone in the house, again...  All the things I really wanted to do around the house to prep for winter (gardening/raking/prep kid snow clothes, organize outdoor gear) include using a right arm, so those were out.  My sister was in town but I hadn't seen her yet, and my glance at Instagram told me that everyone I knew was out enjoying the beautiful weather and that life was good.  I think I let Satan get in my head and it was making me miserable.  So I put on my running shoes and laced them up, added a fleece, plugged in some praise music, and took the dogs for a walk up to the ditch.  I cried a little and hummed along to the music a little, and pet the dogs while they trotted beside me.  Thankfully, by the time I got to the trail back down to the road, I was praising God for the goodness around me and though I felt physically lonely, I was reminded that I wasn't alone.  And by then Kirsten had gotten to my house, and Steve and the boys were on their way home.  Sometimes a little fresh air in the lungs and blue sky in the air reminds me of the many, many blessings I have just by living here in Plain.

Chemotherapy will start for me on Friday the 16th.  I will start with 4 infusions of AC (adriamycin/cytotoxin). Infusions will take place every two weeks.  Following AC, I will have 12 weekly infusions of Taxol.  In combo with all this I get to have Aloxi (prevents nausea), Emend and Dexamethone (to prevent nausea), and Neulasta (to stimulate white blood cell production).  They also send you home with two other nausea medicines and Lorazepam for nausea or anxiety.  Gross - all that unnatural stuff in my system.  I am going to try to manage some of the symptoms with more homeopathic remedies including short term fasting before and after chemo infusions, essential oils application, CBD oils, and whatever else I need to keep a smile on my face.  I'm going to attempt working 16-20 hours a week during this time too - WISH ME LUCK!  Like I said earlier, the unknown is hard for me, so I've made very tentative plans and hope I can exceed my own expectations for staying healthy.

I leave you with a few photos - those I can take from my easy chair :)  I have some good pictures of what my chest scars looks like but I am not quite sure if it's appropriate for this audience... since I'm honestly not sure who this audience is, ha!  They are healing up and hopefully I can handle looking at them up until my reconstruction which is likely about 18+ months out.

Thanks for your encouragement and prayers - they are keeping me mostly joyful throughout this crazy unexpected and long process.  God is good, all the time, and this is no exception.

Recovery

Well I promised some photos and wanted to update on my recovery this past week.  Everyone who comes over to visit tells me that I'm looking really good and physically recovering very well.  Having never had surgery before, I will take their word for it, because I do NOT like sitting here being waited on hand and foot.  I transfer from my bed to the blue chair, back and forth, back and forth...  Quite humbling to one who is used to being independent and the caretaker.  

I've regained quite a bit of mobility in me left arm.  My right arm is still in quite a bit of pain when I reach very far, due to the axillary dissection of lymph nodes on that side.  I visited an OT who specialized in the lymph system last week and she gave me some massage techniques for lymph fluid buildup, but I think since then I'm experiencing some "cording" or axillary web syndrome.  Luckily I see my surgeon on Tuesday for post-op, and the OT again on Friday, AND it usually resolves within a few months if I work to break up scar tissue.  What a pain the arm. ;) 

Surgical wounds are looking good, healing up, no signs of infection anywhere.  I still have three Jackson-Pratt drains in my body, one on the left side and two on the right.  So weird to see the little tubes coming out of my skin, held in with these big old black stiches in my stretched taunt...  they are a pain to work around and I can't sleep on my side or stomach due to them, so I am looking forward to their removal (hopefully) on Tuesday.  Being that the drains on the inside run the entire length of (the place formerly known as the) breast on each side, I'm sure it will be a weird experience to have them pulled out, and I'm hoping I don't puke as many women report happening.  Will keep you all posted.  

As always, thanks for the encouragement from all!  I'm having some down days, but am remaining positive as best I can.  I know it's only been a week, so I am trying to be patient, but I don't like this!  I can only imagine what it's like to live with chronic pain...  you all who deal with that are warriors.  I've been listening to daily "Pray as You Go" podcasts to help keep me centered and grounded.

Pre-Op. Fun fact - that hose behind me on the wall plugs into this weird purple gown and blows warm air directly on to you - I want one at home, so cozy.

Let me tell you how I really feel about cancer.

It felt like I went from rolling into surgery to the recovery room pretty quickly.  Of course I know it was several hours, but glad I didn't have to wait.  I was happy to be chomping on chipotle pasta :) 

Some of my visitors.  I am AMAZED at how that window behind them looks more like a painting... isn't Wenatchee pretty in the fall?

I like wrist IV's better than anywhere else.

My favorite visitor.

Headed home. Clearly I am not tired at all... HAHA.

Spending a lot of time on my booty in bed.

Johnny stole my "breast pillow".  I think it might be a permanent loss - he likes the special arm holes and how it wraps around you so cozily.

Boob Voyage, Thanks for the Mammeries!

Surgery went well yesterday.  My doc said she was able to remove all necessary known cancer, and it all headed off to pathology to confirm how many lymph nodes were effected.  I spent most of the day in and out of sleep afterwards, as the meds made me quite woozy.  I’ve got these super annoying drains sticking out of my chest bandages that I get to wear for another week.  Better than fluid buildup and infection at removal sites though.  I’m pretty sore, but not in super big pain, as I have some pain meds onboard for a few days.  I am strangely excited to see the scars I get to rock until reconstruction time.  

My friends and family are great, and I had lots of visitors stop in to say hello yesterday :) I wasn’t the best company and I think I fell asleep during a few of the visits (oops) but how nice to be thought of. Christie even drove all the way down just so Forest and Olaf could see me!  And thanks to my sisters and to Charlotte, I got to eat some delicious McGlinns and Thai Restaurant food and skip the hospital meal (though I admit the meatloaf was pretty good as I tried a few bites).  Steve was here with the whole time.  I’m so grateful for him.  I think Steve has some good photos so I’ll post those eventually when I’m back home :). 

God is good and full of blessings in all this.  Love to you all!

Another week of normal (as if the Saugens are ever normal... ha!)

Just some fun photos to start this post

 Johnny turned 4 last weekend and we celebrated with the Krenz boys and some Lego Ninjago moves :) 

Forest (orange shorts) has such a great coach and team this year!  So happy to see this after he sat out the season with his broken arm last year.

Been having a lot of thoughts and "feeling all the feels" these last few weeks.

I have been receiving a lot of questions on whether I have/will go to Seattle for a second opinion on my treatment plan.  Which while I recognize is what a lot of folks do, wasn't something I really thought I needed, or needed.  We had decided after our first two meetings with the surgeon that we were comfortable in Wenatchee.  After discussion with Steve a few weeks ago, we still had a few questions regarding axillary dissection of the lymph nodes which we weren't sure that we'd gotten on the information we needed (mostly because I am terrified of lymphedema...) and we thought we might go to UW medical after all.  However, after a week of doing research on our own, talking to other BC survivors and patients, and then having another frank discussion with my surgeon in Wenatchee, I have definitively decided to proceed as we had already decided.  I really do like this surgeon.  I really like staying close to home.  And I feel like based on my particular set of circumstances, the surgery planned is really the best option.  People all over the breast cancer support groups I'm finding always say to one another "go with your gut", so I am!  And it feels pretty good.  I mean as good as you can when you are approaching surgery and a year of life lived differently :)

I had to pull over on the side of the highway to write down the list of allowable foods to eat the Friday before the PET scan.  John shared his toy packaging with me to write on.

I had a PET scan yesterday.  Thanks to my momma for crocheting in the waiting room while I fed my body radioactive sugar and got pictures taken of it :)  And thanks to Steve for making the day a fun one for the boys, taking in a movie at the theater (special treat because we rarely go) and then taking them nerf gun shopping for me at Hooked on Toys.  (We had decided that I needed to stock up my new Perteet office in Wenatchee for a proper stress relieving break, so I let the boys pick out what was needed.)  Hopefully I'll receive the news Monday or Tuesday that all is clear in the other areas of my body!  While the MRI didn't show anything else concerning, apparently I have very dense tissue so this was just another check.

My momma and I headed into Radiology for the PET scan.

Settling in and pulling out her crafts...

Monday morning I'll meet Kendra and Kirsten (sisters) in Seattle to visit with the plastic surgeon who will tentatively perform my reconstruction, if/when I have it.  There are SO MANY options and SO MANY outcomes, it's mostly just a meeting to see how comfortable I am with him and whether he can appropriately answer my questions going forward.  Because I have a lot of them.  And as an added bonus, I get to have lunch with the sisters on capitol hill - I am looking forward to that!

In the last few weeks I have been overcome with gratitude for the wide circle of friends our lives.  We've been blessed with hugs, dinners, meal-train setup, kid help rotation, Schocolate (mmm), words of affirmation, prayer, texts/emails/phone calls/messages, and sincere and hilarious cards in the mail.  I can literally physically feel my gratitude sometimes - it sits the same place that anxiety sometimes does, except it's a welcome feeling, and one that makes me weepy.   I'm so thankful for all our people.

Thanks Michelle!

Thanks Stay family!

Here's to another week of getting things done and with God's grace, a successful surgery on Friday.

Jenn

"The Plan"

Last Wednesday was an emotionally hard day/appointment with my oncologist and surgeon.  Several folks suggested to me that once I had a plan in place I may feel much better, because we were working towards solving the problem!  And I really thought I would too.  But in all honesty, once we discussed my next steps...  I got really overwhelmed.  Like really overwhelmed.  I think that prior to, I had been sort of moving along as though it was all a bad dream of sorts, and maybe I wouldn't have to make a plan after all, and then all the sudden with a plan, everything just got real.  Aside from work, Steve at fire academy, and three kids, this whole cancer is the icing on the anxiety cake.  Sometimes I just have this emotion sitting on top of my chest, like I can physically feel it, and sometimes it just comes out in the form of sobs.  I am thankful for the shoulders to cry on in the past week.  AND I have been gaining some perspective from so many angles of being thankful, rejoicing in trials, and realizing that even though I feel guilty for receiving help when other folks have even harder trials, my God cares about this too.

Waiting.  Lots of waiting.  

Anyway, here's the plan at this point.  We are working through a few questions, insurance issues, scans, and such but think this is how it will go:

• October 19th (two weeks from today): Bilateral mastectomy and right side axillary dissection.  2-4 weeks of recovery time including PT.
• November(ish): Likely start of chemotherapy.  (99% chance anyway).  Likely 5 months or so, depending on the particular drugs recommended by my team?
• Next spring: Radiation on my right side in the axilla area where the lymph nodes used to be.
• Followed by: Maybe reconstruction? I don't know. I can't think that far in advance right now.  But I meet with a plastic surgeon next week to at least discuss my options.
• Followed by: Hormone therapy.  A positive aspect of my cancer being positive for estrogen and progesterone receptors is that doctors have figured out how to control hormones a bit, which can reduce the likelihood of my hormones feeding anything nasty in the future.  Of course it sounds like they come with a whole host of stupid side effects too...   so I'll be researching that in the coming months as well.

I know so many of you want to help out - THANK YOU THANK YOU THANK YOU.  Jaimi and Steve and I are going to sit down this weekend to hopefully map out what type of help I/we need.  Honestly, I don't even know what I need, having never been in this situation of really needing help before.  But we'll get the word out through Jaimi and Jenny and Molly and whoever else once I know.  I am blessed by all you taking the time to read this, pray for our family, and provide your emotional support already.

Oh, and I forgot to say - MRI didn't show anything nasty in areas they didn't already know about, yay! I think I still get a CAT or a PET scan to double check but so far it looks like it hasn't spread further.