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
