I am attempting to transition into being a productive member of society again…and not just a care-taker. I’ve been coming back to work, slowly. I put some time in on three seperate days last week. Put some time in…that’s about it. I’m trying to be productive here. (As I sit here at my desk and blog about why I’m not productive…)
I am fully aware that I will need to come back to work, be productive, earn a living, pay bills, etc…. I’m just still under this weird cancer cloud. Wondering if anything in life will ever feel like it used to; will anything feel like it has meaning? Maybe this is how it’s supposed to feel. Maybe everything should be viewed through these ‘not-so-rose-colored glasses’.
I need to remember that even though things at work are not life & death important (at least for the most part), they are still important. I can’t walk around like nothing matters if it doesn’t entail fighting cancer.
It’s just that…somehow when you walk away from this battle with cancer and realize you’ve survived it…you expect there to be some grand purpose to your life. Like, “OK God, we made it! Now what? What do want from me?” And maybe, just maybe…the purpose is to Just Live. Enjoy life.
Updates: Bob sees the BMT doc again tomorrow. Hopefully his blood counts are high enough to pull out the PIC line that is still in his arm. He’d love to be able to shower/bathe without wrapping his arm in plastic. He’s back at work partially too. Main concern: He’s feeling a bit depressed/frustrated/angry becasue he’s still so tired. “When will I feel normal again?!” (wanting to Just Live)
Mom is seeing her doctor tomorrow too. Says she’s going to tell him that she does not want to see the doctor downtown, she will not go on study drugs or experimental drugs. She is feeling a little better every day. She says, “The doctor doesn’t have anything else to give me, if they want to start with the experimental drugs…they’re done. So am I. It’s time for God to heal me.” I agree. (time to Just Live)
Spent a lot of time with her over the weekend. She is very tired, gets winded easily, but other that that…feels well enough to shop for and plant herbs.
Blake & Connor are learning to ride a bike. Although Blake is 2 years younger, he seems to have mastered the skill quicker than Connor; much to Connor’s dismay. As I sat and watched them ride, I noticed something. Blake makes sure his feet are firmly on the pedals first, then raises his head and starts pedaling. Connor keeps his head down, staring at his feet and often runs off of the path or into an obstacle.
As I explained to Connor that he should get his feet situated first, then look up and keep his eyes on where he wants to go…and not on his feet….I realized that this was a good lesson for me to hear as well!
I need to keep my eyes on where we are going, not the pedaling or ‘work’ of getting there. If I can keep my eyes on God’s word, and stay focused on the fact that there is healing in our path…I think I can learn to ride this out better. I’m not saying that I won’t still fall down once in awhile. But if I do, I’ll remember Blake and Connor. No matter how hard the fall, or how bloody the scraped knees…they get back up and try again – determined to ride that bike.
I will set my feet on the path, keep my eyes on healing, pick myself up after every fall, and finish this walk.
Went for a walk yesterday. Noticed the trees are losing their beautiful flowers. Funny how the seasons change. The spring bursts forth, flowers sprout out almost overnight as the trees bloom…spring seems to jump out in high-definition color!
Then the trees sort of settle in…lose their flowers and prepare for summer.
Still pretty, just not as flashy.
I don’t know why I’m writing this. I guess somehow I feel I should be getting something out of it. We all go through seasons, maybe not so different from the trees.
When this new season in my life started maybe I was very vibrant in my faith. Now as I’m settling in…I’ve lost some of that vibrancy. Still holding on with both hands…just maybe it looks different now.
Just thinking here….but maybe this settling in period is the hardest. Takes patience and perseverance.
Bob had doctors visit this week, started with a respiratory treatment to fight against a type of pneumonia that is common in post-transplant patients. Then we saw the nurse practitioner. He’s still doing very well…all things considered. Still very tired, energy level is increasing slowly but surely.
He even went to work this week.
Although half of his time at work is napping…
On our way home from his doctor visit Tuesday…I called mom to check on her. Couldn’t reach her, so I called dad. He said she had driven up to the office to visit! When we got to work she said, “I figured if Bob could get out and drive, so could I.”
I asked her how it felt to drive, she said,”It was a little scary. I haven’t driven in five months and I was a little nervous, but I made it!”
Both patients doing well. Driving. Working. Napping a lot. Living!
But when the disciples saw him walking on the sea, they were terrified, and said, “It is a ghost!” and they cried out in fear. 27 But immediately Jesus spoke to them, saying, “Take heart; it is I. Do not be afraid.”
28 And Peter answered him, “Lord, if it is you, command me to come to you on the water.” 29 He said, “Come.” So Peter got out of the boat and walked on the water and came to Jesus.
Pretty miraculous. Walking on water. You have to get out of the boat to walk on the water. It’s the getting out of the boat that’s the hard part….or so I think. I think mom has just stepped out of the boat.
It’s a pretty strong statement of faith to tell your oncologist (as he’s telling you the next treatment step) that you want a break. To say, “God is in control.”
I’d call that getting out of the boat.
God I pray that she has no fear as she walks toward you, away from death and toward your outstretched hand. Your hand that stretched across the cross, and sacrificed so that she could claim the healing that you died for.
Went with Bob to see doc…says all looks good. Kidneys fared well through transplant. Doc will call us with 24 hour urine results, we are expecting to see good results. Bob really just needs to recover his energy. His appetite is better, his kidneys are better, his blood counts are better….just needs to have energy. That will come.
Went with mom to doc…he came into the room and started with, “I spoke with Dr. Matous (does anyone else think its weird that mom’s doctor is talking to Bob’s doctor?), and he says there’s no standard treatment that you haven’t already had. He thinks you should make an appointment with Dr. Maris downtown at the transplant office to discuss some studies that he is involved in. They’ve got some new treatment regimes that are promising. They might just have the next home run for AML.”.
Mom responded with, “I think I’d like to take some time off.”
Doc says, “Okay…well why don’t we draw blood first and see what it says? Then if you want to wait a bit….do you think you are feeling better? Do you think the chemo IS working?”
“I think God is in control” mom was pretty confident, “and a few weeks ago, I was very sick. When my white cells were up around 70,000…I was sick. And now I’m better. Something happened and I’m better.”
The doctor agreed with her. She told him, something was making her better….or she’d be dead.
The doctor agreed again.
The doctor asked if she was better every day, mom said yes! He then asked if we agreed with her. And the miracle — dad said, “She is 100% better”. Wow. Dad spoke life!
So the doc ended with, “How about you get blood drawn and if it’s not worse, we will just schedule a visit for next week. Then we can discuss treatment or a visit with Dr. Maris. And it’s always your call- if you want to quit treatment completely, you can.” Blood results were exactly same as last week. No worse.
So we are praying that by next week they are better. And this walk away from chemo, away from treatment, becomes easier. Because mom is convinced that she is healed. She doesn’t want any more chemo. It would be nice to see the blood results line up with our faith now.
Today Bob sees the kidney doctor. Expecting to hear good things.
Today mom sees her doctor too. I’m not expecting to hear anything from him, we are waiting on God to move. We need a miracle. Good thing we know the miracle worker. We spent the day with mom yesterday. She says she’d like to not go through more chemo. Not because she’s giving up…and she doesn’t want her family to think she’s giving up…but because she’s sick of the chemo. It really takes it out of her.
We had a conversation about healing. Do we believe that it is Gods will that she be healed? Yes. Then what is he waiting for?
We are pretty sure that the doctor will suggest a new treatment plan. Mom does not know if she wants to go through with it.
I told her, “We will stand behind you 100% as long as we know that you are confident in your decision. If you tell me that you have prayed about this and you have faith in God’s word…whatever you decide is ok with us. I will pray that you hear from God, that He directs your steps, that you hear Him clearly. If He says you are healed with no more chemo, I’m with you. If you think He’s saying you need more treatment, we’re up for that fight too. Mom, we are behind you whatever you choose.”
Just a few pictures.
Connor and dad fixing breakfast.
Mom reading to Blake….waiting for breakfast.
Home made brioche rolls and strawberry-blackberry jam. Yummmm.
Bob and Blake watching the roofers.
Connor picked me some flowers. “Gram, I’m sorry but one of these might be a weed.”
Whatever will be, will be? No, I don’t like that. I was taking a walk and found myself singing this old Doris Day song. I’ve never really been a ‘whatever will be, will be’ sort of person. I guess in theory it’s a nice way to live…but when you get right down to it I think I more of a ‘what’s going on here’ sort of person. The future may not be ours to see, but we can have hope for our future. I may not have all the answers about what will be….but we do have a future!
Went to moms this morning. Took some home made strawberry jam, mom and dad made biscuits and pancakes, eggs, ham, hash browns, coffee and juice. Aimie and the boys, Bob and I, mom and dad all had breakfast then went out back on the porch to visit. Mom looks pale. She’s very tired. I kept telling myself that we walk by faith, not by sight. I hate cancer.
Bob had a rough day. Feels sick to his stomach (hope its not the jam), had to give him more anti-nausea medicine again this afternoon. Tomorrow he starts collecting his urine in a jug for 24 hours, then have to deliver it to the hospital Monday morning. They will see how his kidneys fared through the transplant. Fun, fun. Two doctors visits next week. I think we’ll try to get back to work too.
Jordan and Katie came over this afternoon, we made more jam. And I also made some brioche bread. Tomorrow morning – fresh bread and jam. Living it up!
Confession: I’m sort of addicted to the food network.
I watched Ina Garten make strawberry jam…and it looked so easy.
In line with my new ‘life is for the living’ mantra (thank you Shannon)…I decided that home made strawberry jam would be a beautiful gift for Bob, mom and the boys.
Sooo…living life = making strawberry jam, taking it to mom’s house tomorrow for breakfast!