What you are about to read is not a complaint about my recent good news!
On Friday night some friends joined us for "family friendly" karaoke night at a local restaurant. It was so nice to spend some time at the microphone, singing love songs despite having a big hole in my right brain (where music is generally processed). I reflected back on my three Messiah performances since my head was carved (and a fourth performance is planned for December 16), and felt very blessed.
I also found myself marveling on Saturday morning as I participated in a two-hour special karate lesson taught by Master Black, a seventh-degree black belt who was in town to celebrate our dojo's 25th birthday. I learned to fend off grappling, knife attacks, and all kinds of punches and kicks, and couldn't help but consider it symbolic of the way my brain and body have withstood the onslaughts of cancer and cancer treatments (so far, at least). I realized that I was literally "alive and kicking", and it was miraculous.
On Saturday evening my husband and I caught a few minutes of the "edited-for-television" broadcast of the movie, Saving Private Ryan. We hadn't seen it before, but my grandmother told me that my grandfather served in that same company portrayed in the movie, so I was happy to find a non-R-rated version. Even so, it was still intense and violent and frightening during the few moments that we saw, and I couldn't help but try to imagine how anyone (and thankfully how my grandfather) managed to survive such a nightmarish experience, storming the beaches on D-day. This is the same grandfather who later died of cancer, but he lived seven years after being given a six-month prognosis. More than once, he had to survive against the odds, and I guess I've been lucky to follow suit (so far).
It's been a good week. However, I also noticed this week that I face a new danger: the danger of good news.
I should repeat that this is not a complaint. I really like having good news! I feel like Ralphie in the movie, A Christmas Story, when his mom covers for him so that his dad won't punish him, and he says, "I slowly realized that I was not about to be destroyed!" That quote keeps going through what's left of my mind ever since the MRI results came out good.
I know that the battle isn't over (I still need the prayers, thank you thank you thank you!!!). And I know that there are no guarantees for anyone's longevity. But the "death may be imminent" pressure has subsided a little bit -- kind of like the piano hanging over my head getting a nice, new cable reinforcement. It's good in a lot of ways, but I realized that I need to be careful about this new danger.
When adversity strikes, it comes rich with opportunity. There is greater clarity in a once-complicated life, and there is greater appreciation for things that were taken for granted. Faith grows stronger, love grows deeper, and blessings are easier to find. Of course, we'd be much better off if we could seize these opportunities without waiting for adversity to leave them at our feet. And when we get a season of joy and relief, we'd be much better off if we could retain the valuable perspectives from times of hardship. Otherwise we drift into the danger zone, where we lose what we learned.
Just a few days ago I caught myself getting impatient over things that were very trivial and stupid--things that wouldn't be worthy of my notice even a week ago. I realized how easy it is to let the good times roll...into the danger zone.
Added to Ralphie's "not about to be destroyed" voice in my head is the voice of the prophet Alma: "Yea, he that truly humbleth himself, and repenteth of his sins, and endureth to the end, the same shall be blessed--yea, much more blessed than they who are compelled to be humble..." (Alma 32:15)
I'd rather not "be compelled". I'd rather figure out how to keep all the benefits of my cancer journey without having to forfeit this season of joy. I've had the chance to learn much about enduring difficult times; now my challenge is learning how to endure good times without becoming complacent.
(Hopefully I'll just have to keep getting good news, so that I can practice!)
Sunday, September 23, 2007
Tuesday, September 18, 2007
Carb-Free
(Carboplatin, that is!)
MRI results were great! My doctor is very pleased, and she decided that I could stop taking Carboplatin. However, rather than going cold turkey with the chemotherapy altogether, she is leaving me on Avastin for six more months, and then if things stay good she will let that treatment go, too.
I'm naturally very relieved and grateful that things went this well, and I appreciate the prayers that not only helped bring about this result, but also helped me be calm and unafraid.
This opens up a new world for me in some ways. On the good side, I don't have to worry about my white blood cells crashing anymore (the Carboplatin did that). But I do have to keep monitoring my platelet levels and kidney function, and I have to be on guard for stroke (which has happened to patients). I'm also allergic to Avastin, so I'll still be taking a lot of Benadryl on treatment weeks.
My infusion and monitoring schedules will remain the same (labwork every week, Avastin infusion every two weeks, neuro test every four weeks, and MRI every eight weeks), but instead of alternating short and long infusions I will have the same 45-minute infusion each time.
The next MRI will be a nervous one, because it will be the first one following the switch to "maintenance". But, hey -- it's better than dealing with tumor progression and waiting to see whether it responds to treatment. And we have a game plan: if the next MRI has any funny business on it, they may just add Carboplatin or another drug back into my treatment.
Meanwhile, I get to celebrate that I'm not only alive longer than predicted, but my brain also looks better than it did a year ago.
MRI results were great! My doctor is very pleased, and she decided that I could stop taking Carboplatin. However, rather than going cold turkey with the chemotherapy altogether, she is leaving me on Avastin for six more months, and then if things stay good she will let that treatment go, too.
I'm naturally very relieved and grateful that things went this well, and I appreciate the prayers that not only helped bring about this result, but also helped me be calm and unafraid.
This opens up a new world for me in some ways. On the good side, I don't have to worry about my white blood cells crashing anymore (the Carboplatin did that). But I do have to keep monitoring my platelet levels and kidney function, and I have to be on guard for stroke (which has happened to patients). I'm also allergic to Avastin, so I'll still be taking a lot of Benadryl on treatment weeks.
My infusion and monitoring schedules will remain the same (labwork every week, Avastin infusion every two weeks, neuro test every four weeks, and MRI every eight weeks), but instead of alternating short and long infusions I will have the same 45-minute infusion each time.
The next MRI will be a nervous one, because it will be the first one following the switch to "maintenance". But, hey -- it's better than dealing with tumor progression and waiting to see whether it responds to treatment. And we have a game plan: if the next MRI has any funny business on it, they may just add Carboplatin or another drug back into my treatment.
Meanwhile, I get to celebrate that I'm not only alive longer than predicted, but my brain also looks better than it did a year ago.
Sunday, September 16, 2007
Pivot Point
I remember more than nineteen years ago, being unable to sleep the night before my wedding. Part of the reason was that I spent that night in a hotel with my family, and my younger brothers stayed up late watching Beetlejuice on television in our room. But the main reason was anticipation, knowing that the next day's event would change my life in a big way.
Tonight may be another sleepless night. Insomnia is hardly a novelty for me, but once again there is that anticipation, knowing that things will soon change for me in a big way. At least with my wedding I already knew that life was changing in a good way. This time things could go either way. The next couple of days will be highly pivotal for me as I reach the end of my current treatment protocol.
I leave early tomorrow morning for yet another trip through the MRI tube. This is followed by a merciless wait until Tuesday morning, which is the earliest my doctor is available to read the MRI results and deliver the verdict. I will either be NEDP (no evidence of disease progression) for twelve consecutive treatment cycles, which would mean great things for me (including a reduction or possibly even a suspension of treatment). Or I could have a new battle on my hands. Either way, it will be significant.
Naturally, I can't help but look for clues that might tell me how my cranium might be doing. It's like I was many years ago, undergoing infertility treatments, and being obsessed with signs of pregnancy (as if there are any noticeable signs three hours after conception). Yesterday my husband caught me making faces in the mirror as I tried to confirm facial symmetry. I managed to teach my Relief Society lesson today in church, and I even sang the hymns from memory (both positive signs of neuro function), but I couldn't find the music I needed to direct choir practice, and I had the usual "where are my shoes?????????????" moment.
(I think my husband is going to put "She went to find her shoes" on my headstone. I have many proud Brain Tumor Savant moments of brilliance, but I can't leave the house without my ritual of stomping through it, looking for my shoes. I have a lovely shoe organizer in my huge and disastrously messy closet, but I still run around with two mismatched shoes, saying, "I know there's another pair just like this somewhere, ha ha!")
The truth is that I'm completely useless in giving myself clinical indications of how my head will look on the inside. I'm too much like my whole-brained, quadragenarian peers and fellow parents of young kids. We have our good days and then we have our bad days where we're looking for shoes so our kid Whatshisname can get to school on time. Plus I had no symptoms last year when the MRI picked up tumor progression. I'm just going to have to wait and be patient until I get the real news.
I kept thinking to myself today, "I'm either living or dying." And then I had to correct myself: I'm living AND dying, just like I was from the moment I was born. Just like we all are, regardless of MRI results or lab results or professional opinions. Life is a terminal condition, so all who have life are eventually dying. Meanwhile we are living, and what we do about that -- whether we just sustain a heartbeat or whether we really LIVE -- is a choice, and it is one of the things that we can still control, even when everything else in life seems so out of control.
This situation is out of my hands. Things are what they are, and the MRI will just reveal what already is. I believe that things are probably as they should be -- whatever that means in the Lord's good will and plan for me.
It still may be a sleepless night. It still may be a suspenseful and emotional couple of days. But I am armed with the knowledge of Who is in charge, and with this situation in His hands, everything will ultimately be okay--no matter what the path will look like for the next leg of the journey. And I know that, once again, I will feel the sustaining strength of many prayers on my behalf.
I just need to find and lay out my shoes before I try to go to sleep...
Tonight may be another sleepless night. Insomnia is hardly a novelty for me, but once again there is that anticipation, knowing that things will soon change for me in a big way. At least with my wedding I already knew that life was changing in a good way. This time things could go either way. The next couple of days will be highly pivotal for me as I reach the end of my current treatment protocol.
I leave early tomorrow morning for yet another trip through the MRI tube. This is followed by a merciless wait until Tuesday morning, which is the earliest my doctor is available to read the MRI results and deliver the verdict. I will either be NEDP (no evidence of disease progression) for twelve consecutive treatment cycles, which would mean great things for me (including a reduction or possibly even a suspension of treatment). Or I could have a new battle on my hands. Either way, it will be significant.
Naturally, I can't help but look for clues that might tell me how my cranium might be doing. It's like I was many years ago, undergoing infertility treatments, and being obsessed with signs of pregnancy (as if there are any noticeable signs three hours after conception). Yesterday my husband caught me making faces in the mirror as I tried to confirm facial symmetry. I managed to teach my Relief Society lesson today in church, and I even sang the hymns from memory (both positive signs of neuro function), but I couldn't find the music I needed to direct choir practice, and I had the usual "where are my shoes?????????????" moment.
(I think my husband is going to put "She went to find her shoes" on my headstone. I have many proud Brain Tumor Savant moments of brilliance, but I can't leave the house without my ritual of stomping through it, looking for my shoes. I have a lovely shoe organizer in my huge and disastrously messy closet, but I still run around with two mismatched shoes, saying, "I know there's another pair just like this somewhere, ha ha!")
The truth is that I'm completely useless in giving myself clinical indications of how my head will look on the inside. I'm too much like my whole-brained, quadragenarian peers and fellow parents of young kids. We have our good days and then we have our bad days where we're looking for shoes so our kid Whatshisname can get to school on time. Plus I had no symptoms last year when the MRI picked up tumor progression. I'm just going to have to wait and be patient until I get the real news.
I kept thinking to myself today, "I'm either living or dying." And then I had to correct myself: I'm living AND dying, just like I was from the moment I was born. Just like we all are, regardless of MRI results or lab results or professional opinions. Life is a terminal condition, so all who have life are eventually dying. Meanwhile we are living, and what we do about that -- whether we just sustain a heartbeat or whether we really LIVE -- is a choice, and it is one of the things that we can still control, even when everything else in life seems so out of control.
This situation is out of my hands. Things are what they are, and the MRI will just reveal what already is. I believe that things are probably as they should be -- whatever that means in the Lord's good will and plan for me.
It still may be a sleepless night. It still may be a suspenseful and emotional couple of days. But I am armed with the knowledge of Who is in charge, and with this situation in His hands, everything will ultimately be okay--no matter what the path will look like for the next leg of the journey. And I know that, once again, I will feel the sustaining strength of many prayers on my behalf.
I just need to find and lay out my shoes before I try to go to sleep...
Wednesday, September 12, 2007
...and TWENTY ONE!
It's my birthday again! Twenty-one months since my cancer diagnosis, or as Lance Armstrong would say, since the day I started living again.
I'm far beyond the expected lifespan, and well over the hump toward becoming a long-term survivor (which in this case is defined as three years post-diagnosis).
I spent this morning finishing up an ISO recertification audit, and then my husband and I stopped briefly at our local family history center to process some family history records. Tonight my son and I have a karate lesson. Meanwhile, I think I'll celebrate with a nap. In-between all this, I'm washing my hands and slathering them with sanitizer lotion like an obsessive-compulsive. But it's not bad for having half my brain tied behind my back for 21 months!
I'm far beyond the expected lifespan, and well over the hump toward becoming a long-term survivor (which in this case is defined as three years post-diagnosis).
I spent this morning finishing up an ISO recertification audit, and then my husband and I stopped briefly at our local family history center to process some family history records. Tonight my son and I have a karate lesson. Meanwhile, I think I'll celebrate with a nap. In-between all this, I'm washing my hands and slathering them with sanitizer lotion like an obsessive-compulsive. But it's not bad for having half my brain tied behind my back for 21 months!
Monday, September 10, 2007
Crash
It's so much more fun to give glowing reports of happy news, and I've been lucky to have lots to share. But let's face it - cancer sometimes has its bad news moments.
My blood cell counts have crashed. I don't know all the details, but I'm neutropenic (very low white cells - very vulnerable to infection) and the other stuff is "pretty low". I was in an audit all day and so the nurse relayed the message to my husband, who did his best to capture the salient points without knowing all the detailed questions I would normally ask.
It's almost like my body kept hearing me brag about how I'm at the end of a twelve-cycle treatment regimen, and said, "Wow - I've had THAT much chemotherapy?? I guess I should be sick by now!" I wouldn't be surprised at all if I suddenly woke up bald, if my body lets my hair in on the secret.
These lab results were from a blood draw on Friday. Since Friday I've eaten lots of raw fruits and veggies, and I've shaken many hands. I spent most of Friday night and Saturday morning in our filthy garage, getting ready for our neighborhood garage sale and getting lots of bruises (thanks to low platelets) and exposure to unimaginable germs. Who knows what I could possibly be incubating at this moment. Sleep deprivation and a busy/stressful week do not help, either.
(Quick -- tell me a joke, because laughter boosts the immune system!)
I'm hopeful that next week's MRI scan will be good, so that treatment won't be necessary. If that's the case, then I just need to be the bubble girl and avoid surviving glioblastoma by dying of a freak infection.
It's a prayer moment!
My blood cell counts have crashed. I don't know all the details, but I'm neutropenic (very low white cells - very vulnerable to infection) and the other stuff is "pretty low". I was in an audit all day and so the nurse relayed the message to my husband, who did his best to capture the salient points without knowing all the detailed questions I would normally ask.
It's almost like my body kept hearing me brag about how I'm at the end of a twelve-cycle treatment regimen, and said, "Wow - I've had THAT much chemotherapy?? I guess I should be sick by now!" I wouldn't be surprised at all if I suddenly woke up bald, if my body lets my hair in on the secret.
These lab results were from a blood draw on Friday. Since Friday I've eaten lots of raw fruits and veggies, and I've shaken many hands. I spent most of Friday night and Saturday morning in our filthy garage, getting ready for our neighborhood garage sale and getting lots of bruises (thanks to low platelets) and exposure to unimaginable germs. Who knows what I could possibly be incubating at this moment. Sleep deprivation and a busy/stressful week do not help, either.
(Quick -- tell me a joke, because laughter boosts the immune system!)
I'm hopeful that next week's MRI scan will be good, so that treatment won't be necessary. If that's the case, then I just need to be the bubble girl and avoid surviving glioblastoma by dying of a freak infection.
It's a prayer moment!
Sunday, September 02, 2007
ch-ch-ch-ch-changes...
Today I was called, sustained, and set apart to be a teacher in our Relief Society organization (the women's organization in our church). I teach a thirty-minute lesson every third Sunday, starting this month.
I was thrilled to get this calling for many reasons, but especially because it requires me to be alive and functioning! They don't need me to be the choir director for the Second Coming -- at least not yet! (Those who have read my earliest posts know that my niece's theory was that if I died, maybe it was so I could be the choir director for the Second Coming!) I'm glad that my last calling wasn't my LAST calling, and that I can still serve a useful purpose here upon the earth.
I am looking forward to teaching the sisters in my ward. For one thing, I already know firsthand that they are a very charitable group of women, so it makes me feel less nervous as I prepare my first lesson. Also, it will be nice to spend more time giving back something to these women, who rendered so much service to me when I needed it.
This new opportunity is great but also somewhat bittersweet, as the plan is to eventually release me from my calling as the Primary music director after the children do their fall program. Singing with the Primary children is part of my music therapy. I have had many Maria Von Trapp moments working with them, and will miss them dearly. ("So long, farewell, auf wiedersehen, good-bye...")
Change can be hard to adjust to, especially when basking in a comfort zone. It's hard to end a good chapter. The good news is that when we end a chapter, we start a new one, and it can be full of wonderful things. And even when we have to put our pencils down and end the whole story of our lives there is the post-life epilogue.
I'm glad that I will still get to see the Primary children sing, and maybe I'll get a chance to substitute on occasion for the new director. I still have my callings as the ward choir director and music chair, so I still get some good music therapy. (And we're starting to work on Christmas music already!) And I am really looking forward to this new teaching opportunity, because I came to appreciate long ago that the teacher is the one who learns the most.
I was thrilled to get this calling for many reasons, but especially because it requires me to be alive and functioning! They don't need me to be the choir director for the Second Coming -- at least not yet! (Those who have read my earliest posts know that my niece's theory was that if I died, maybe it was so I could be the choir director for the Second Coming!) I'm glad that my last calling wasn't my LAST calling, and that I can still serve a useful purpose here upon the earth.
I am looking forward to teaching the sisters in my ward. For one thing, I already know firsthand that they are a very charitable group of women, so it makes me feel less nervous as I prepare my first lesson. Also, it will be nice to spend more time giving back something to these women, who rendered so much service to me when I needed it.
This new opportunity is great but also somewhat bittersweet, as the plan is to eventually release me from my calling as the Primary music director after the children do their fall program. Singing with the Primary children is part of my music therapy. I have had many Maria Von Trapp moments working with them, and will miss them dearly. ("So long, farewell, auf wiedersehen, good-bye...")
Change can be hard to adjust to, especially when basking in a comfort zone. It's hard to end a good chapter. The good news is that when we end a chapter, we start a new one, and it can be full of wonderful things. And even when we have to put our pencils down and end the whole story of our lives there is the post-life epilogue.
I'm glad that I will still get to see the Primary children sing, and maybe I'll get a chance to substitute on occasion for the new director. I still have my callings as the ward choir director and music chair, so I still get some good music therapy. (And we're starting to work on Christmas music already!) And I am really looking forward to this new teaching opportunity, because I came to appreciate long ago that the teacher is the one who learns the most.
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