I was able to go for a walk today. I pushed the wheelchair for support and in case I needed to sit down, but I didn't! I was able to walk all the way around the little lake in the park! I feel so accomplished!
Psalm 126 - The Lord has done great things for us, and we are filled with joy.
so thankful that Day 11 is here and has brought relief. woohoo!
it's not perfect, but it's good.
Sorry to not update sooner. It has been a rough week and I needed prayer but didn't ask. So thankful that so many people sent texts and notes of encouragement. The Lord knew what I needed and sent it through y'all without me asking.
After chemo on Thursday, I felt ok enough on Friday to go to bible study. It was great to get out of the house and see some ladies at church and be encouraged. After bible study, I crashed - which was expected. Saturday was rough and Sunday was worse. My GI issues swung from one extreme to the other and we had to visit the ER to get some balance. My nurses and doctors in the ER were great and once they ruled out really bad stuff, they treated my immediate complications I was released to go home at 4am. I really need to find a balance of the medications I am on!
Monday was a rough recovery from staying up all night, but I looked forward to a hydration appointment that brought more relief. Tuesday and Wednesday felt back to the normal "miserable" but slightly less as I was able to tolerate a bit of food! Thursday brought more relief with another hydration appointment after which it felt like I was turning a corner. Throughout the week, texts of encouragement got me through. I am amazed at the particular verses people were prompted to send and how those words met me right where I was at.
Meals this week were such a blessing as I was able to tolerate a bit of each food people dropped off and it gave me a variety of leftovers to choose from during the day making it more likely I would eat anything. Thank you for bringing us meals!!! I told one couple last night that they may feel like one meal wasn't making a dent, but all the cards, meals, and texts feel like a wave of care crashing into us. We are so blessed and cared for by our loving God who sees me and knows what I need before I ask.
"...for your Father knows what you need before you ask him." - Matthew 6:8
Today's chemo went well. My dear friend Tracy drove me and sat and chatted making the 4 1/2 hours go by quickly. I am so thankful for the encouragement and support of my life group ladies who have each picked a day to spend with me at the hospital and help make this burden lighter!
Please pray that I will be able to better manage side effects this round with new meds that I got today. I am hopeful!
Chemo #3 is this Thursday. Not looking forward to it, but with God all things are possible. I will cling to that.
I've finally figured out how to describe how I feel. The first 10 days, I feel "miserable". The next 7-8 days, I feel "yucky". And the last 3-4 days, I feel "ehh". But since ehh feels pretty good compared to miserable, it's nice to feel ehh.
I'm getting the hang of my side effects and all my meds (numbered 1-11 on my counter). I have found that smoothies, applesauce, and potato salad are consistently tolerable to eat.
We just met with the oncologist and are not planning to scale back my chemo, but instead add another prescription that a friend recommended to manage my digestive tract. Pray that it works! otherwise, I've just doomed myself to another 3 weeks of fighting it. The doc said even though it's still hard to manage, since I've gained back 6 pounds these last 2 weeks (after losing 23), she feels I can do it.
Pray that I will be brave and bold. Pray that I can endure. Pray for me to remember that this is temporary.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." - Paul to the Corinthians
This round, again, day 11 seems to be where I turn a corner. I feel significantly different and for the better. I don't exactly feel good, but I am still encouraged.
My daily routine is still to stay in bed as long as possible. Then I get up and have some breakfast, which exhausts me, so I return to bed for another hour. On my 2nd waking, I'll read a little and listen to a podcast or audiobook, then have 2nd breakfast. My meals are more substantial than the 5-bites, but still small and frequent. Everyday I have visions of accomplishing something and then I try to do any physical activity - like unload a dishwasher - and am exhausted, so I acquiesce and go back to doing nothing. Yay.
What God is teaching me... patience. endurance. reliance on Him. humility. allowing others to serve me. how to sit quietly. that He's with me in the dark valley. cancer does not equal freedom from other difficulties. I am still selfish. I still make foolish choices. Even when I have all the time in the world, I can choose to spend it poorly. I can't always power through.... and yet, while I may not be quick to learn, He is patient to teach. He is there and He is not silent. (Also a book by Francis Schaeffer - highly recommend)
"My soul will boast in the LORD; let the afflicted hear and rejoice." Psalm 34
This time, chemo brought side effects almost immediately. Nothing new, so I was prepared for almost everything. Most of the side effects are less than they were last round except the pressure on my heart. Family and friends have carried me through with prayers, visits, notes of encouragement, and delicious meals. I am so thankful for the people God has placed in my life to help me through this really hard time. An appointment with the oncologist gave options to scale back treatment because of the toll the side effects are taking on my body and decisions must be made by 9/23.
Please continue to pray for side effects to wane. Please pray for my heart to withstand the pressure and for the wisdom in decision making. Pray for my family to be comforted as they watch me endure from near and far.
"Lord, I have heard of your fame; I stand in awe of your deeds, O Lord. Renew them in our day, in our time make them known" - Habakkuk 3:2
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the more detailed version...
The evening of chemo#2 I started feeling a little yucky and it only increased from there. Nausea was a little less this time with more of just a general feeling of yuckiness. I was able to eat normally that first night. Saturday brought more yuck and it started being challenging to eat, but I wanted to get some food in before the mouth sores hit, so I was diligent about getting food down even if it didn't sound appealing. So thankful the mouth sores NEVER CAME! Woohoo! But I did establish a good pattern of eating a 5-bite meal almost every hour that has lasted. I can do anything for a few bites - even if it doesn't taste good or the texture is offensive. Even my loss of taste was slightly different: sweet did not completely go away and I had more of the feeling like I burned my tongue. I am still really thankful that I do not have metallic taste 24/7 that some patients have.
We met with the oncologist on Wednesday and she asked IF I could continue. I didn't know I had a choice. I hate what is happening. This poisoning my body to try to kill it, then doing what we can after to try to keep it alive - it's so taxing physically and emotionally. She said she assumes one of my four treatments meds is responsible for my worst side effect that is really working my body. I am receiving two chemotherapy drugs and two targeted therapies (immunotherapy) that address a specific protein on my cancer cells. She is willing to skip one targeted therapy if it enables me to continue the course with the other three drugs. This will be a hard decision I have to make before the next treatment on 9/25. GOOD NEWS! In a basic exam, she could not find the lump that started this whole mess! Yay. (This does not change the course of treatment but is encouraging. There will be no imaging to see what is going on yet.)
I was quite dehydrated, so the doctor sent me straight away for IV hydration on Wednesday (and told me to keep my hydration appointment for Friday). About 15 minutes into the infusion, I felt SO much better. I am so thankful for the help they can give and need to be better about asking for it instead of just enduring.
Thursday morning I felt good enough to leave home, but had little energy so my FIL Jim picked me up along with the wheelchair my dear friends Beth & Leah left at the house "just in case" and I was able to do his morning walk with him. The older people walking at the park seemed confused by the older man pushing the younger woman in the wheelchair. ha. I was SO thankful to get out of the house, though I could not have done it without the chair. So also SO thankful that the Lord sent the chair I didn't ask for but have used almost everyday.
Several nights, I have been wide awake for a few hours between 2-6am (side effect). I chose to listen to the Bible - partly because the guy's voice can put you to sleep, partly because I've read it so many times I can fall in and out of sleep with it and not be lost. (In the daytime I do this with old movies.) I am thankful for the Word of God washing over me as I travel down this road.
I thought I could get to bible study Friday morning, but the silly side effects keep knocking me down, so I did not make it. My hydration felt like too much and left me feeling miserable for the evening. My poor body.
Well, chemo #2: One week down, two to go.
Next chemo infusion: Thursday 9/25.
Chemo #2 was at the regular infusion center and only took 4 1/2 hours. I had a fabulous nurse and my good friend Wendy from our life group drove me there and sat with me through it all. We had a fun time catching up on what our kids are up to while all the meds ran through the IV. My veins cooperated again. Hooray! It felt like a somewhat uneventful day though I am already tired. Other good friends from Kindred and homeschooling days, Cheryl and Dean, brought a delicious dinner which I truly savored as I am expecting loss of taste in the next 48 hours. The Lord has put so many great people in my life to care for me in this time. Scott is amazing and his burden is lightened as people from Kindred and CAP and homeschooling and even USAFA pray and offer rides and meals. We are truly blessed by the generosity of others and the love conveyed in the texts I receive daily checking in and offering prayer. THANK YOU!
For those who have offered tangible help. There is a meal train for after each chemo treatment. It seems I am not well from days 3-11, so we tried to pick days in that range to support me not making meals for our (now small) family of 3. This is awkward, but people asked, so gift cards for food are welcome. We like chick-fil-a, rubios, jersey mikes, panda, blaze, jamba, in-n-out, farmer boys, cafe rio, del taco. We shop at stater bros, sams club, and amazon.
For the awesome ladies who offered to clean - I have been trying really hard to spend the days before chemo cleaning well so I don't have to take you up on those offers because even though I've cleaned people's houses when they are sick it sounds crazy to let you clean mine, so I'm not ready yet, but may get desperate in the next weeks or months. (: I promise to let you know.
Goals: no ER visits (or ambulance rides), better management of side effects, live well relying on Christ through it all
Prayer requests: that I would continue to hold tight to my Savior, that we can manage my side effects well, that I allow people to help, that we see God's hand through the mess
For those who pray, thank you for praying for us. For those who cook, thank you for cooking for us. For those who serve, thank you for serving us. We are SO GRATEFUL for you!
"There are different kinds of gifts, but the same Spirit distributes them. There are different kinds of service, but the same Lord. There are different kinds of working, but in all of them and in everyone it is the same God at work." - I Corinthians 12
On Tuesday I found out that last weeks blood tests showed nothing of concern. Yay! Then later Tuesday they called to express concern with my last CT scan, BUT since I don't have abdominal pain or a fever, I'm good to go for now. ???
The Air Force Academy Parents' Weekend is always Labor Day weekend. We make reservations a year in advance. It's a big deal. And when I told my oncologist about this event and dropping Silas at GCU, she arranged my chemo dates to accommodate. So thankful that she offered to do that. It also got my chemo started a week early - which seems like a good thing. Thankful for the Lord's hand in all the things that got us there. I felt fatigued but was willing to work with what I could do. Scott, Jim (grandpa), and I had a fantastic weekend with Jonas and even got to hang with Kaia for a bit. Woohoo. Now we are back home. I am exhausted and planning to stay home for a good while. Today I am cleaning the house and stocking the kitchen for the onset of tomorrow's chemo at 9am. We were definitely prayed through this trip as there were several unexpected sidequests (flight diverted, ambulance & ER trip, barber), but just so thankful I was able to go at all!
And for those who want to know more in my old style of blogging our travels, here is the long version of the craziness of our Colorado Adventure...
It turned out to be an eventful trip. Our direct flight from OC to Denver on Thursday was delayed over an hour after we were all on the plane because Denver had weather. After we finally took off, we had almost made it to Denver when our pilot announced there were 30 planes waiting to land before us and we didn't have enough fuel for the queue, so we headed to Phoenix. Silas got a laugh when we were just 20 minutes from him again! We were on the ground another hour, refueled and headed to Denver where we landed 4 hours late - making for quite the late evening. We checked into our hotel just off base about 1am and had to leave at 6:30am Friday (because of traffic) for the Parent's Weekend Parade at 8am. We arrived at the parade field after a short walk up from the parking lot at 7:55am - perfect timing.
After the parade (9am), we went back to the hotel where I slept until Jonas was released from classes at 12:30. We drove over to meet him and walked 1/2 mile from the car to the food truck area, found Jonas and got in a line. About 10 minutes into the line, I felt funny, maybe a little light-headed, so I asked Scott to walk me to a bench to sit. After a short bit, I felt worse and laid on the bench, then noticed my heart rate was pretty crazy. Someone went for help, they ended up calling 911, and as much as I wanted to say I didn't need it, I truly didn't know because my heart rate was up and down so much. So, I got an ambulance ride to the hospital and found that my potassium had tanked again. (like my last ER trip). Post hospital visit, we went to Walmart and found the electrolyte pack that had the most potassium and bought that to use 3x/day to avoid future ER trips. (Yesterday I picked up a prescription for daily potassium to take for the rest of chemo season.)
Saturday I ran Jonas from the hotel onto base to attend to his tailgating set up duties. Then I headed back to the hotel to get ready for the football game. At the hotel, I went to rebraid my hair and needed to brush it a little - which I had been avoiding - and 1/2 the hair on one side of my head was brushed out. So I knew I needed to get to a barber because I couldn't have my long hair falling out all day at the football game and the open house dinner with his friends after. What better place to get your head shaved than the base barber? Well, it was closed. So, we found a place off base and they took care of my head quickly and with a bit of tears on my part. And I donated my hair (again). Then we enjoyed the football game where Jonas was surprised to see my very untanned head. (think of my watch tan and it's even more pale!) Even the game was eventful as all outdoor activities on base must cease if there is "lightning within 5" (miles). So in the middle of the 3rd quarter, the stadium was evacuated and everyone was to go to their car and listen to the AM radio (if you have that) to know when to re-enter. About an hour later, we (and only about 30% of the others) re-entered the stadium and finished the game. AF wins! Traditionally, we go to the OCF (Officers' Christian Fellowship) group for an open house dinner with another 100 cadets and their parents. So these are the other parents we know well. They were so sweet and supportive and left me with promises to be praying - the best part of the body of Christ at large - bearing one another's burdens.
Sunday we visited the church Jonas usually attends then drove into the mountains to an airbnb another cadet's family rented. On the way, we stopped at Garden of the Gods where we did a super short (.4 mile) hike stopping many times along the way, but it was so good to walk a little. That evening, we enjoyed fellowship with the Henrys with food and beautiful scenery and sunset. It was a pleasant day.
On a parent's weekend, we are usually hiking within 24hrs of arrival and we will get in atleast 3 hikes before returning, but with my energy level as it is, we spent a lot of time at the hotel lobby playing games. We even picked up more games at the thrift store to give a little variety. (It was Military Monday 50% off so we walked out with 3 games for under $7!) Though it wasn't our typical time together, it was special and we enjoyed each other's company.
Monday, we ate a leisurely breakfast and played games. We met up with Scott's good friend from growing up in Oregon at Dave and Buster's for lunch and an afternoon of games. Then we made the traditional Sam's Club run to stock Jonas with lots of goodies before he returned to base. Kaia came down and ate dinner with us before we said goodbye to Jonas. So sad, but such a good weekend together that was only possible because I started chemo early. Thank the Lord!
Tuesday, we enjoyed breakfast and games with Kaia before heading to lunch and the airport to head home. It was a bonus to get this time with her since she typically works Thursday-Monday. So glad we could delay our flight out to have time with her, too.
Thankful that our Colorado kids could participate in a little of the mom-drama of the ambulance, ER, and head shaving, but ultimately, that our time together was sweet and each of us affirmed our reliance on Jesus to get us through all parts of life - including cancer.
From my ambulance driver's tattoo: Isaiah 41:10 "Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
My side effects are mild right now. I can mostly taste again. My mouth sore continues to heal. I do have a cold - runny nose, sore throat, sneezing - and sometimes bloody noses. But...
I am SO THANKFUL to have had the opportunity to drop our youngest off at college in Arizona. I wasn't sure if my body would cooperate, but it did. Thank you for praying for that! My hair even cooperated... it just started falling out in the last 24 hours. Yay? Although I am ok with losing my hair (because I don't really have a choice), it is still hard and makes me sad.
Sunday on the drive to AZ, I got a phone call to go submit more blood to be cultured as it seems like something showed up on the blood they took Tuesday night at the ER. Monday, my oncologist called with the same request plus more. So, this morning upon return to CA, I went to the lab. Please pray that they figure out whatever they are trying to figure out and are able to diagnose and treat, preferably quickly and easily. It takes a few days to get the results, so I just won't worry about it in the meantime.
But I trust in you, O LORD; I say, "You are my God." My times are in your hands; - Psalm 31
Feeling like I've turned a corner today. Thank you for praying!
There are still side effects happening, BUT I feel pretty normal (just tired) today. Went to Ikea with the boys (knowing they have wheelchairs) and did some college dorm shopping for Silas's big move next Monday!
Mouthsore is still super painful but feels like it's on the mend. Eating a soft diet still, but sense of taste is also coming back.
Rejoice with me!
Worship the LORD with gladness; come before him with joyful
songs. - Psalm 100
Yesterday, the nurse hotline sent me to the ER to make sure that my side effects were actually side effects of chemo and not evidence of other infection. By the end of the visit, I understood that the first 2 weeks of the first chemo are a testing of how MY body will respond and what remedies MY body will accept for MY side effects. I got home just after 1am and woke up feeling much better and much more normal this morning. Yay!
Pray for: the new meds I received to work and the side effects of the new meds to be tolerable.
Details:
I was pretty lethargic from lack of nutrition and dehydration. Turns out, I have a single mouth sore that's placed perfectly so it is super painful to swallow. The "magic mouthwash" for mouthsores did nothing to improve my symptoms. I was also having some elimination issues.
They took some blood and other samples to run all my numbers. Good news: no infections, all my symptoms are just side effects of the chemo. While waiting for the results, they treated my mouthsore and I was rehydrated with 2 bags of fluid. As my numbers came in, I was given a few other vitamins and minerals to get everything within normal range. I accepted the morphine to alleviate pain. I ate more calories (in jello, applesauce, and pudding cups - so not a lot) than I'd been able to get down in the previous couple days. Scott and I agree that my nurse, Keith, was amazing! I am sure he is in high demand and the Lord wanted me to have the best, so that must have been what the 4-hr wait was all about. (:
I came home with 2 new meds to attempt to control side effects that have run amuck. We shall see.
He
who dwells in the shelter of the Most High will rest in the shadow of the
Almighty. - Psalm 91
Thank you all for praying. Back pain is back to normal management. Nausea is being treated and I feel like I have a handle on it. New prayer request: Food... Please pray that I can eat.
(stop here if you're not medical or super-intrigued by the design of the human body!)
TMI...
I haven't been eating much because there is a sore on the roof of my mouth making it extremely painful to swallow anything (even water) because the tongue naturally pushes against the roof of the mouth with every swallow. Please pray for this sore to resolve. (I also have lost 90% of my sense of taste, only some "salty" is left) so nothing is even tempting. So interesting because I feel all the texture and no flavor.) Praying that I can eat more normally soon. In desparation for calories I had Scott liquify my chicken and rice last night and then tried to bypass chewing which helped because nothing rubbed against the sore but I still had to swallow. ):
Thanks for asking.
The plan is for chemo every 3 weeks until just after thanksgiving. I go 9/5, 9/25, 10/16, 11/6, and 11/28 (woohoo! my black friday find will be my last chemo infusion!)
I also go in 7 days after each chemo for a hydration. Yesterday was my first and in light of the difficulty swallowing, 1L of fluids was welcome.
I hear that I should feel better-ish next week because it's "bad for 2 weeks" then tolerable for 1 before heading back. I'm looking forward to tolerable.
After chemo is done, my body gets a 6 week rest before surgery (Jan/Feb). Then possible radiation, depending on which surgery. Then targeted treatments for 9 months (through 2026).
The doctors are very optimistic. The cancer I have is stage 2 and the "common" type (70-80% of breast cancer diagnoses). (specifically, IDC 2a - - + for those who know the grammar of cancer which I am now learning) So we shall see.
I am optimistic, not because of the stats they can quote, but because I am a child of God. He loves me and cares for me. Though I am in a dark valley, He is with me. My life is in His hands and that is a great place to be.
The Lord is my shepherd...He restores my soul. -Psalm 23
Normally, there are side effects. I now have them. Woke up with some nausea this morning. Spent most of the day sleeping. Not too bad so far. I hear days 3-4 are the peak and things may stay bad for a week or so or wane. We shall see.
Please pray for my back pain. I normally deal with it by walking regularly. I cannot go walk today, so I am in a significant amount of pain from something not even cancer related. ): Right now the back pain is worse than the chemo side effects. Go figure.
Thankful for all the encouragement from friends and family. I am still hope-filled and blessed.
Thankful to report that my first chemotherapy treatment went well. The hospital called at 7:30am and said they had a bed available, and because it's the hospital, my first infusion started shortly after 1pm. But I was so well taken care of by my lovely nurse Diana and all the Kaiser staff and more or less enjoyed the day.
Scott took me in and we watched an intro to chemo video. Carrie and Bella Schultz then relieved Scott and enjoyed learning the grammar of cancer and chemo as well as playing games and chatting. Kaden & his fiancee Harli were next. We enjoyed stories of other hospital memories and contemplated things I can do when extremely fatigued - like Harli tutoring me in calculus, because, why not? Silas got to feed me dinner while my hands were occupied in the cold therapy gloves. My nurse, who had to be watching me for any allergic reactions, was thoroughly entertained. Scott came back and drove me home.
We were home about 8pm. We enjoyed a delicious dinner delivered by dear friends from church. We prepped a little for not sharing a bathroom and splitting laundry baskets, etc because the poison (chemo) will be leaking out of me for the next few days. I followed up on some communications I'd missed including letting people know who didn't know yet. Sleep came easily.
I woke this morning feeling fine, so I dragged Silas out of bed to go for my morning walk/run. I keep thinking the symptoms will hit any moment and I didn't want to be alone. Also, I'm not supposed to drive for 48 hours and I wanted to walk in the pretty park nearby so I needed a driver. So, I ran 5 miles this morning. I figure the extra blood flow is good for distributing the meds? My cancer treatment instructions do say to walk every day, so I am following orders.
It hasn't been 24 hours yet. The chemo parts of the infusions started at 3pm, so we shall see what hits. My nurse did say that 0.000001% of patients skip some side effects, so that could be me, but I'm not holding my breath. However, for those of you who prayed for no side effects - you are awesome!!!
I planned to post an update on 8/31 - the 2 year anniversary of the accident (adventure #2). (Adventure #1 being the 2016-2017 trip around the USA.)
Well, early update: Kaden is doing awesome. His injuries are not holding him back. He is and we are thankful to God for His faithfulness seeing Kaden through this challenging time and we are so blessed that in His providence, though there will always be lasting effects, most people who meet Kaden today have no idea what he's been through because he walks and moves and uses all of his arms and legs like normal. Woohoo! and Praise the Lord!
Why did this update come early? Because I am going to hijack the family blog sharing our adventures for another medical drama unfolding before us - "adventure #3" (???) we didn't plan for...
I have cancer.
After a routine mammogram, I needed a follow-up ultrasound (which, for me, is also routine), but the day of the ultrasound, they asked if I could stay a bit for an immediate biopsy. The results were not good, but God is. So, on 7/28, I received the news - cancer. I have been to the doctor everyday since for scans and bloodwork and tests and meeting specialists and the result is that I will be starting chemotherapy this Monday, 8/11.
I've been meaning to get my hair trimmed. Guess I'll be taking off more than I ever planned for.
But - God is good. He is with me. "The Lord is good, a refuge in times of trouble. He cares for those who trust in him" - Nahum 1:7
Trusting Him yesterday, today and always!
