While Alex was having his bone marrow biopsy on Friday, I stood outside the room listening (yes, I listen in on these things). All the while reminding myself "God loves him more than you do"; a mantra over and over in my head as I silently pleaded with God to take this cancer away. I wasn't completely convinced that could be true because how could anyone love my children more than I do? I was racked with guilt after Ian died, afraid that God had taken him because I love him (present tense, not past) and Alex & Amy perhaps more than I love God; at least in a demonstrative way. I don't know....does continuing to follow God through the valleys show love? I've heard from two different places this week about learning the most from the valleys not the mountaintops. If I've spent so much of my life in the valleys, I must be a slow learner. People have commented on how much they admire my faith and how strong it is - I honestly don't see it. I see a woman filled with questions, demanding answers, unsure if her faith will survive this latest assault, angry that God would put us through this kind of trauma again, preparing for the worst but hoping and praying for the best....I don't see it....I see failure and disappointment not a bastion of faith. But I continue to cling to a God who I believe loves me (and Alex) in spite of all that.
As we wait for Alex's test results, there's a few things I've been meaning to write down.....
Lessons learned from our time at Loma Linda Medical Center as an inpatient:
1) there is poverty around us that I often don't see up close but we saw it there and honestly, it was a little frightening.
2) as a doctor, when you come to tell a family that their child (no matter how old) has cancer expect to spend more than 4 minutes them.
3) hospital bureaucracy is puzzling - I'll leave it at that.
4) when examining a patient with Lymphoma, don't be overjoyed that the lump in their neck is still there after treatment as it will be a good marker for any future progress - glee is not appropriate in this circumstance.
5) when going over treatment options, start with the diagnosis. Don't assume that we somehow magically know that our son has Stage 4 cancer and it's worse than we ever imagined.
6) the Pediatric Heart Transplant team still walks on water.
I've been rather surprised, but pleasantly, that I'm not completely
neurotic as we wait for Alex's test results and I know that calmness of
spirit is a gift and God has somehow been able to quiet my soul without
the aid of medication. We're hoping for a phone call on Wednesday with
results and how we'll proceed from here. His care is complicated with
timing when he'll resume his immunosuppresent medication and how much is
too much. We'll have to find a balance between keeping the cancer at
bay (if it's gone) and not rejecting his heart. I never knew our lives
would be like this 28 years ago when Alex got his new heart but I
wouldn't trade a day without him.
Alex and I have a routine every night. We do essential oils on his feet (I may have created a ritual he'll expect till I die cuz he's not complaining about these nightly foot massages) while we watch 'The Andy Griffith Show' followed by three episodes of 'The Rifleman' (I don't like the change to the theme music in Season 4 but there's nobody to complain to anymore). Sometimes popcorn is included before it's time for bed. After I get his diffuser ready with more essential oils, we tie a knot in his prayer quilt thankful for a good day then I kiss him on the forehead and give him butterfly kisses on the top of his bald head (he always giggles because it tickles). Let's not forget the 'I love you's' before I close his door. It's a lovely way to end our day.
But for now, we wait......
The battle against cancer continues...
Tuesday, February 27, 2018
Friday, February 9, 2018
Putting the fear aside
We have not been idle but I wish we had. We've had three ER visits in the last two weeks (one was for me - I joke that I was feeling neglected). One biopsy (me again, docs aren't too concerned and we're not expecting anything to come back) two transfusions and one visit to a surgeon - and those are just the highlights.
Our latest adventure Tuesday night at the Marian ER included a 3 hour wait with 5 hours total, one very painful abscess lancing for Alex and a late night for all of us. My biggest heartbreak is seeing Alex in pain; I have spent too much of my life seeing my children in pain and having very little control over it. But my Alex is strong and brave and handled the pain like a grown man - how did he get so brave? In the aftermath of that procedure I sat next to him, stroking his still bald head (because for some reason that brings him comfort) and I noticed his beautiful long eyelashes were almost gone. Ever since he was a baby people have commented on how long and full his eyelashes are .....but those are fading fast.
After Tuesday, Alex continued to be in pain and we were able to see a surgeon today (Friday) who found the abscess had not been lanced in the ER (maybe Alex had two???) and had actually grown larger. So, another very painful procedure for Alex today but he's feeling better know, so we'll see if this did the trick. It'll be a 1-2 week healing process.
This bump in the road may be the answer to our dilemma of how much chemo is enough? Eric & I have been conflicted in our desire to kill this cancer without overdoing it and causing more long term damage down the road. Transplant patients have been shown to not need as much chemo to battle their PTLD cancer. For whatever reason, they have responded to chemo well and fast; you'd think the opposite would be true since their immune system is compromised but it's not. We won't proceed with his scheduled 4th and last round of chemo on Monday, 2/12. His oncologist doesn't want to have him going through chemo and all that entails while battling an abscess so we have a change in plan. Alex will have a bone marrow biopsy on the 23rd; if that comes back clean then we will probably proceed with a whittled down version of his RICE protocol and just have a few doses of the R - Rituxan. Rituxan is one of the newer treatments used in fighting cancer and is not a chemotherapy drug. It is an antibody therapy drug used to treat a specific marker on cancer cells. It is better tolerated and doesn't require a hospital stay.
We had just gotten off the phone tonight with his oncologist, ironing out which antibiotics Alex should be on and feeling a sense of relief. Eric promised the doctor we would NOT call him this weekend. As I'm preparing to dress Alex's wound I see a bump in his neck and my stomach drops. Have you ever felt that? That sinking feeling where your whole chest sags and hope rushes out. I can't remember all the times I've felt this way. I remember the major ones; when we were with Alex at Loma Linda with his first cancer and Amy broke her leg at home, when Alex told us very nonchalantly over dinner that he had found a new lump in his neck, but mostly when Ian was sick. I remember where I was and what was being said and reminding myself that I had to be strong for my children That I couldn't let my fear show.
I'm almost afraid to touch this new, sudden lump; this can't be what I'm afraid it is - it can't be the lymphoma. But I do touch it and hope rushes out. But I remind myself of the time I found a lump in Alex's neck after his first bout with cancer and it turned out to be an infection; his body was reacting like it was supposed to. And I remind myself that his body is fighting an abscess right now and I'm praying that God will be merciful and this will just be a normal reaction to that infection. We'll start the antibiotics and see if this goes away over the weekend. My ever practical husband isn't worried; he says it doesn't make sense that the cancer would come back this quickly and he's right but we've had the rug pulled out from underneath us before and it's hard to fight the fear. It's hard to trust when the fear is so near.
I ask God, why? Why can't we just have a week.....a few days without something hanging over our heads. Without the fear of a new battle ahead of us? Just a small reprieve so we can pretend that our lives our normal. Where Alex could go on all the sporting trips he's planned with his uncle Mike that he just spent half an hour telling me about tonight? Why does it always have to be SOMETHING we have to watch for, wait for, look out for? This mama bear is tired of waiting for a reprieve.......tired of being afraid.
One of things that helps put things in perspective are Rick Warren's Daily Hope messages. He's doing a series called "When you're hoping for a miracle." I think that's pretty apropo, don't you? Monday's message was about your life being shaped by your thoughts. He's also talked recently about fear. Did you know that psychologists have found 645 fears that people have - such a plethora of choices! And I know some of them intimately.
It's sometime a daily, hourly battle to fight fear because we have walked through the valley and seen how dark it is. But as I'm writing this, I can hear Alex in his room planning trips with his Uncle Michael. In this Alex is my example; he continues to live his life, he continues to make plans for the future, he continues to put the fear aside. God help me to put the fear aside and not miss today.
Our latest adventure Tuesday night at the Marian ER included a 3 hour wait with 5 hours total, one very painful abscess lancing for Alex and a late night for all of us. My biggest heartbreak is seeing Alex in pain; I have spent too much of my life seeing my children in pain and having very little control over it. But my Alex is strong and brave and handled the pain like a grown man - how did he get so brave? In the aftermath of that procedure I sat next to him, stroking his still bald head (because for some reason that brings him comfort) and I noticed his beautiful long eyelashes were almost gone. Ever since he was a baby people have commented on how long and full his eyelashes are .....but those are fading fast.
After Tuesday, Alex continued to be in pain and we were able to see a surgeon today (Friday) who found the abscess had not been lanced in the ER (maybe Alex had two???) and had actually grown larger. So, another very painful procedure for Alex today but he's feeling better know, so we'll see if this did the trick. It'll be a 1-2 week healing process.
This bump in the road may be the answer to our dilemma of how much chemo is enough? Eric & I have been conflicted in our desire to kill this cancer without overdoing it and causing more long term damage down the road. Transplant patients have been shown to not need as much chemo to battle their PTLD cancer. For whatever reason, they have responded to chemo well and fast; you'd think the opposite would be true since their immune system is compromised but it's not. We won't proceed with his scheduled 4th and last round of chemo on Monday, 2/12. His oncologist doesn't want to have him going through chemo and all that entails while battling an abscess so we have a change in plan. Alex will have a bone marrow biopsy on the 23rd; if that comes back clean then we will probably proceed with a whittled down version of his RICE protocol and just have a few doses of the R - Rituxan. Rituxan is one of the newer treatments used in fighting cancer and is not a chemotherapy drug. It is an antibody therapy drug used to treat a specific marker on cancer cells. It is better tolerated and doesn't require a hospital stay.
We had just gotten off the phone tonight with his oncologist, ironing out which antibiotics Alex should be on and feeling a sense of relief. Eric promised the doctor we would NOT call him this weekend. As I'm preparing to dress Alex's wound I see a bump in his neck and my stomach drops. Have you ever felt that? That sinking feeling where your whole chest sags and hope rushes out. I can't remember all the times I've felt this way. I remember the major ones; when we were with Alex at Loma Linda with his first cancer and Amy broke her leg at home, when Alex told us very nonchalantly over dinner that he had found a new lump in his neck, but mostly when Ian was sick. I remember where I was and what was being said and reminding myself that I had to be strong for my children That I couldn't let my fear show.
I'm almost afraid to touch this new, sudden lump; this can't be what I'm afraid it is - it can't be the lymphoma. But I do touch it and hope rushes out. But I remind myself of the time I found a lump in Alex's neck after his first bout with cancer and it turned out to be an infection; his body was reacting like it was supposed to. And I remind myself that his body is fighting an abscess right now and I'm praying that God will be merciful and this will just be a normal reaction to that infection. We'll start the antibiotics and see if this goes away over the weekend. My ever practical husband isn't worried; he says it doesn't make sense that the cancer would come back this quickly and he's right but we've had the rug pulled out from underneath us before and it's hard to fight the fear. It's hard to trust when the fear is so near.
I ask God, why? Why can't we just have a week.....a few days without something hanging over our heads. Without the fear of a new battle ahead of us? Just a small reprieve so we can pretend that our lives our normal. Where Alex could go on all the sporting trips he's planned with his uncle Mike that he just spent half an hour telling me about tonight? Why does it always have to be SOMETHING we have to watch for, wait for, look out for? This mama bear is tired of waiting for a reprieve.......tired of being afraid.
It's sometime a daily, hourly battle to fight fear because we have walked through the valley and seen how dark it is. But as I'm writing this, I can hear Alex in his room planning trips with his Uncle Michael. In this Alex is my example; he continues to live his life, he continues to make plans for the future, he continues to put the fear aside. God help me to put the fear aside and not miss today.
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