Aimie and Bob at clinic on “outfit day”
Eyes getting better.
Beautiful tree outside hospital where mom gets blood. “Oooh, Kim…get a picture of that tree.” Didn’t know what else to do with the picture…
A little Blake time for Bob…or was it a little G-Bob time for Blake?
On way home from clinic Bob wanted to pick up boys and “Oh ya, there’s a house in this neighborhood that had a fire…let’s buy it and fix it up.” Connor asked, “G-Bob is this house on sale?”
Meghan! Told us Bob was cancer free….then tried on Bob’s hat/hair.
Mom coming over morning after Bob gets great news. She’s on her way to chemo but comes to congratulate Bob. “Congratulations Bob! Praise God! Thank you God….oh thank you you Father!”
Bob replies, “You next!” Amen.
When we received our wonderful news yesterday, we were also informed that Bob’s platelets were low and he’d need a transfusion. He’s still got some recovering to do. He asked, “How much longer before I start to feel like I have energy?” Could be as long as three months, but he should feel a little bit better every day.
Yesterday I was hoping he’d feel a lot better! I was hoping for a celebration! But….slow down a minute…Bob’s not up for a celebration yet.
The nurse at the infusion center asked how he felt, “Great! They just told me I don’t have cancer!”
“That’s awesome Bob! How are you going to celebrate?”
“I’m going to take a nap” and he reclined the chair and fell asleep. Then we came home and he slept and puked the rest of the evening. Yep….the celebration will have to wait a bit. Maybe we’ll hold off and celebrate with mom when she gets her good news.
I have been expecting good news, I have been setting my eyes on the good, I have been telling God that I trust Him…so why was yesterday so shocking? I didn’t even know that they’d drawn the blood to test for the cancer. Dr. M and I had a discussion before the transplant and he’d said that we would wait for 90 days to see if the transplant had worked. He said, “Kim, don’t even think about results for 3 months,” so I wasn’t.
Yesterday Meghan said, “Well last time things went badly, and the news wasn’t so good…so we thought we’d just not tell you anything for 90 days…but this was good news. I knew you’d want to know.”
Yes. Last time Bob had a transplant we heard, “We’re so sorry, it didn’t work. It failed. But we can start experimental treatments…..”
Oh yes, I remember. That’s why the decision to go through this horrific experience again was such a hard one to make. You don’t forget someone telling you that you have failed transplant. I guess the same as you don’t forget someone telling you that the transplant was a success.
Yes, maybe the celebrating will come later. When mom gets her good news. When Bob feels alive. When I’ve mentally digested all of this.
I’m still a little numb. But…comfortably numb. (I know, I know…Pink Floyd again)
High / Low for today? Nope. Today is just HIGH.
Yesterday I made a conscious decision to just say the good stuff. I had a talk with myself. I said, “Self!” (shout out to BAR there) “stop complaining, stop whining, stop acting like you have no faith! You are a child of God. He told you to just believe. He said He’d never leave you, and His promises are true.” I told myself to get out of the mud, stop wallowing in self pity and doubt, and that tiny bit of fear, and start acting like God loves me. Start acting like my FAITH tells me to. Walk by faith not by sight.
I get so caught up in the numbers, the test results, the physical symptoms, the exhaustion of it all….but wait! God doesn’t get exhausted. He doesn’t get tired. He doesn’t change. He is the rock on which I stand. So ‘self’…shut up and stand on that rock. So after having an attitude and faith adjustment…I feel better. Going to church last night helped too. Even though Bob didn’t last through it all.
Sooooo, even though the numbers aren’t what we are hanging on to, and we are walking by faith and not by blood tests, today I’m going to celebrate a blood test.
Saw the nurse practioner at clinic today. She said, “we drew cancer markers Tuesday…you wanna know results?” Told her no, we would wait awhile. We were not ready to talk about cancer yet…needed to recover from transplant…”thought Jeff told us we were not going to look at light chains until he was 90 days out?” I responded, a bit in shock. I haven’t even prepared to think about the results of this transplant yet….
“Well you’re gonna want to know these results, light chains 10. Bob, you don’t have cancer. The transplant worked!”
I’m still crying.
Good news today. I’m only going to say good things.
Jordan saw his eye doctor last week, and they said “usually this procedure stops any further damage from the disease….I’ve never seen it actually reverse the damage!” Jordan’s eyes are better!! Thank you God. Jordan says the doctor was surprised and happy.
Bob had a strawberry shake today and held it down. He’s also had plenty of fluids that he’s held down. He feels well enough that he wants to go to church “just for the singing” tonight.
Mom is a rock star. Could be the strongest person I know. Never complains, never asks for anything. Just keeps a good attitude and keeps on moving. While at the cancer center today we told the nurse that she was a bit wiped out, they drew blood, her H&H was 7 & 23. Her blood pressure still very low. So she’s walking around with half the blood as a normal person….and not complaining. She was treated with IV fluids and will get 2 units of blood….but holy crap mom!!! She is a rock star.
So on the way out of the hospital we saw a statue of Jesus and some children. Our vacation habit is to pose next to statues … I have so many pictures of my family contorting their bodies in strange semblances to statues. I ask mom, ” so…do you want to pose?” Her reply, “I’ll just stand by Jesus.”
Good advice. I’ll just stand by Jesus too.
I’m tired. I’m crabby. I’m sad. I’m a tiny bit afraid. Afraid of what? I don’t know. I do know that God did not give me a spirit of fear, so I need to get away from it.
Bob has moments of ‘life’, like today when he decided that he wanted to go to the grocery store on the way home from the clinic. This burst of energy was gone as quickly as it came and he had to use a grocery store scooter as he was too tired to walk through the store.
After our quick trip to the store Bob’s dad came to sit with him so that I could go sit with mom. She had her chemo today and isn’t feeling so good. They had to give her IV fluids because her blood pressure was LOW…like 90/40 low. She never complains. She’s a rock star. She’s so strong, and so generous, and so much doesn’t want to put anyone else out….but she needs to be pampered right now. And if I have to drag Bob’s tired butt over there to sit on her couch all day, I will!
So I’d like to apologize to anyone who I’ve been rude to, calls that I haven’t answered, texts that I cannot reply to. Because I don’t have the energy to care about anything else right now. I’m sorry that I don’t care…but I don’t. I don’t care about anything that isn’t related to this fight. Everything else feels trivial. I know I should be trying to enjoy life, and re-engage…but right now I feel like taking my eyes off the fight may result in a sucker punch that could end me. Fatally dramatically? Maybe. But that’s where I am today. God please help me to have more faith, more peace, more of You.
And Mike – my socks don’t match.
Mom started her next round of chemo today. Her first of 7 days in a row, then a bone marrow biopsy a week later. Bob had another day off today. Woke up puking again.
Is anyone as sick of reading this crap as I am of writing it?
I have a lot of stuff inside my head…but most of it would sound like insane, unstable flight-of-ideas; so I’ll just keep it sane here (or as sane as possible). Being under this amount of stress for such an extended amount of time, or as Aimie says ‘living in survival mode’ for this amount of time—may just be messing with my head. Or maybe I’m just now thinking clearly? (see what I mean?)
I want more out of life. More than just surviving. More than just waiting for cancer to go away. When this is over….I want more. Life more abundantly. There is a lot of time to think about life while your sitting here facing death. I tend to wonder…when God gave us this gift of life, not just when we were born, or even born again, but I’m talking about when Bob was given this second chance at life….eight years ago when he woke up from that coma and walked out of the hospital that all the doctors told us he would die in….that GIFT of life: did we squander the gift? We went back to work, we clicked off days on a calendar, we didn’t do anything magnificent with the gift. We didn’t do anything life- changing…..does God want more from us? I want more from Him.
No clinic today, no unexpected visit to the hospital. No more to say. Not over yet, just taking a day off.
So today was supposed to be the first day off in 24 days of coming to the hospital, but Bob woke at 2 AM with a bit of a nose bleed. It stopped, but it did ooze for a good five minutes or so. The nurse in me said, get to the emergency room if he starts to ooze again. The tired wife in me said he’ll be fine until daylight. Once I was fully awake I called the on-call doc and we came in to get a blood draw. Platelets low, to the infusion center for a unit. We’re almost finished….we’ll start our break tomorrow.
I can’t get impatient yet. We’re still IN IT all. We will get a break soon. God….give us a break .
We will run the race to the finish line. No falling down yet. One day at a time.
Today was our last of the “every day trips” to the clinic. We have three days off! Kind of like our spring break.
Dr M is leaving next week for Mexico…his spring break. When Bob and Rusty and some of their other friends were younger…they used to go to Florida every year for spring break. They were a bit rowdy, and tended to dress up in strange outfits when going out on the town. To this day, when the end of March rolls around Bob reminisces about his spring break outfit days. Bob wanted to dress up in one of his spring break outfits before going today.
He figured today was the perfect time to celebrate…and the outfit was his way of doing so.
I sent Rusty the picture. His only response, “spring break is just a state of mind….and an outfit!”
Dr M and the nurses appreciated his humor. I will appreciate the break.
Saw the doctor with mom…Was prepared to talk to him about whether or not the chemo was working, and if it wasn’t working-why was she going to keep getting beat up with it. And guess what?!?! Great visit. He says her blood work has not shown blast cells since starting this new chemo. And she can start it next week IV instead of as subcutaneous injections. So it should be easier to tolerate. He also says that he couldn’t be happier with the response so far. One more round of chemo then a bone marrow biopsy again.
So….welcome to my roller coaster. Was walking into this visit thinking that we’d be talking about why this chemo wasn’t working (because of some of the comments dad’s been making related to the visits they’ve been attending together), and wind up elated with what I hear. But again…trying to remain calm and steady through it all. Don’t want to keep riding this roller coaster of emotions.
Awwwww, who am I trying to kid – I think there is a celebration in our near future. Thank you God!