I'm bumming out.
One of my lovely oncologists called today. Sigh. My first impulse is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.
CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google; I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for). My doctors feel anything below 3.4 is good.
My white counts have gone low again, too.
I hung up the phone and cried.
Then, life continues. The phone rang again. I thought it was the doctor with more news. But, it was a friend. We hadn't talked in awhile and she was on her way to pick up her kids, with a few minutes to spare. When she innocently asked how I was doing, I burst into tears again. But I have to admit, it felt so good to talk with her. I am grateful that she acted on her inspiration to call me at that moment. It was just what I needed.
Connecting with Susan gave me energy to take the boys and do some retail therapy at Winston's Flowers. A few containers, plants, and flowers later, I felt a bit vindicated. The boys had a great time playing in the water fountains and were soaked through. They wanted to ride home naked. Fine with me.
When I drove up to the dock to load my purchases into the car, the saleswoman marveled at my calm. If only she knew.
I'm getting re-tested next week and hoping this is all just a fire drill.
Tuesday, May 5, 2009
Wednesday, January 21, 2009
CT scan is clean!
Yesterday was the inauguration of Barack Obama, our new president and a symbol of hope and renewal for our country. The changeover occurs at noon, whether or not he has been sworn in.
Yesterday, I had my six-month check-up appointment with my oncologist to get the results of my CT scan. In the waiting room, I met a man, his wife and brother. The man was in the first third of his treatment for colon cancer. I could see myself in him, last year at this time, and I could feel the difference in myself from then till now.
At five minutes to 12, I sat with my husband and oncologist in her office. We commented on how we were missing the inauguration, then she told me that my CT scan showed no sign of cancer. YAY!
We talked about other things -- the results of my blood tests, my continued low white count, the little and thankfully unchanged things they see in my lungs and thyroid, and kids. Always kids -- a neutral topic that somehow connects some of us.
And then, we left, with a new lease on life and a new president!
Yesterday, I had my six-month check-up appointment with my oncologist to get the results of my CT scan. In the waiting room, I met a man, his wife and brother. The man was in the first third of his treatment for colon cancer. I could see myself in him, last year at this time, and I could feel the difference in myself from then till now.
At five minutes to 12, I sat with my husband and oncologist in her office. We commented on how we were missing the inauguration, then she told me that my CT scan showed no sign of cancer. YAY!
We talked about other things -- the results of my blood tests, my continued low white count, the little and thankfully unchanged things they see in my lungs and thyroid, and kids. Always kids -- a neutral topic that somehow connects some of us.
And then, we left, with a new lease on life and a new president!
Monday, January 12, 2009
Ms Radiation
My periodontist requested a full mouth x-ray. Just a routine thing -- they like to have new ones done every three to five years.
So I called the dentist's office to schedule it. The conversation went something like this:
"You don't need to make an appointment. You can come in anytime tomorrow," they said.
"No problem. I have a CT scan in the morning, but I can come in the afternoon. Just drop by anytime?"
Why on earth I mentioned the CT scan, who knows. Why would they care? But good thing, because the response was,
"Oh, we don't like to give you too much radiation in one day."
Yikes. I hadn't thought about that. Well, I did, but chose to ignore it, filing under the necessity of modern living.
"Okay....hmmm..." I looked at my calendar. I now wanted some distance between those two appointments. "How about early February?"
"Sure. February 5th?"
"Oh....I have a mammogram that day." What am I, Ms Radiation these days? This is kind of scary.
I think a bit then say, "This isn't urgent. Let's just do it in March. I'll give you a call."
Wow. Between all these tests, I'll be radiated from my pelvis up. Would it be called a "healthy glow"?
So I called the dentist's office to schedule it. The conversation went something like this:
"You don't need to make an appointment. You can come in anytime tomorrow," they said.
"No problem. I have a CT scan in the morning, but I can come in the afternoon. Just drop by anytime?"
Why on earth I mentioned the CT scan, who knows. Why would they care? But good thing, because the response was,
"Oh, we don't like to give you too much radiation in one day."
Yikes. I hadn't thought about that. Well, I did, but chose to ignore it, filing under the necessity of modern living.
"Okay....hmmm..." I looked at my calendar. I now wanted some distance between those two appointments. "How about early February?"
"Sure. February 5th?"
"Oh....I have a mammogram that day." What am I, Ms Radiation these days? This is kind of scary.
I think a bit then say, "This isn't urgent. Let's just do it in March. I'll give you a call."
Wow. Between all these tests, I'll be radiated from my pelvis up. Would it be called a "healthy glow"?
Friday, January 9, 2009
Anticipating my six month CT check-up
So, my CT scan is coming up. This is my six-month check-up after finishing chemo. I have the scan next Tuesday. Then the following Tuesday, Inauguration Day, I meet with my oncologist to get the results. In fact, my appointment is at 11:30 am, just about the time of the inauguration! I hope this is the beginning of a wonderful new phase for all of us.
This weekend, I started to obsessively plan trips. I'm not someone with wanderlust, so this isn't normal behavior for me. After recording every day off, long weekend and school vacation between now and April, I became a woman obsessed with planning places to go and things to do. I specifically wanted places that were fun, interesting, different, and potentially non-refundable. On top of that, I found a blank spot in my schedule and committed to taking a course this semester. Because, if I plan these things, there is a future, right?
I'm realizing that planning these trips is my coping mechanism for dealing with the stress of any upcoming tests. While I can often pretend that cancer is behind me, the next few weeks contain vivid reminders that I live under a bit of a cloud. There is my CT scan, and the follow-up appointment for that. Then, my mammogram (yup, still doing those!) and my follow-up for that. The good news is that these are all in a span of a few weeks, then it is (fingers crossed, lotsa prayers) back to life as usual.
But for now, I'm trying to drink lots of water so that they can more easily find a vein to get blood out, contrast in. I'm trying to relax. And I'm eating lots of chocolate!
This weekend, I started to obsessively plan trips. I'm not someone with wanderlust, so this isn't normal behavior for me. After recording every day off, long weekend and school vacation between now and April, I became a woman obsessed with planning places to go and things to do. I specifically wanted places that were fun, interesting, different, and potentially non-refundable. On top of that, I found a blank spot in my schedule and committed to taking a course this semester. Because, if I plan these things, there is a future, right?
I'm realizing that planning these trips is my coping mechanism for dealing with the stress of any upcoming tests. While I can often pretend that cancer is behind me, the next few weeks contain vivid reminders that I live under a bit of a cloud. There is my CT scan, and the follow-up appointment for that. Then, my mammogram (yup, still doing those!) and my follow-up for that. The good news is that these are all in a span of a few weeks, then it is (fingers crossed, lotsa prayers) back to life as usual.
But for now, I'm trying to drink lots of water so that they can more easily find a vein to get blood out, contrast in. I'm trying to relax. And I'm eating lots of chocolate!
Monday, October 27, 2008
Context for the messages
I'm setting up this blog a bit "after the fact" in response to requests from folks to read all the messages. This is my first time blogging and my first message on it!
Two years after I was diagnosed and treated for DCIS (a very early form of breast cancer), I was diagnosed with colon cancer. With two young children, I was not excited about going through surgery, chemo and everything those would bring into my life. But, for some things, there is no way around them, only through them. So we moved ahead.
At first, I didn't want to tell anyone. Everyone had been so supportive through my DCIS, I didn't want to show up again all, "Hi! It's me again! Cancer vixen!" It also felt a bit like I was crying wolf.
Then a friend of mine, who also had cancer, noted that
1. This is not "crying wolf." This IS wolf.
and
2. People cannot help if they do not know what is going on
So, I slowly started to tell people.
I continue to be amazed by the support we received. It came from places I never would have guessed or have thought to ask for. I am also amazed by the reactions we received. Though there are some reactions that made me uncomfortable, those were truly few and far between. People were incredibly supportive and positive and did not make me feel pathetic.
In this blog are the messages that I sent to a growing support system as I went on this wild ride. I appreciate and relied on all the support I received, and felt so blessed as I traveled along.
I learned that there is just alot of love in the world.
Two years after I was diagnosed and treated for DCIS (a very early form of breast cancer), I was diagnosed with colon cancer. With two young children, I was not excited about going through surgery, chemo and everything those would bring into my life. But, for some things, there is no way around them, only through them. So we moved ahead.
At first, I didn't want to tell anyone. Everyone had been so supportive through my DCIS, I didn't want to show up again all, "Hi! It's me again! Cancer vixen!" It also felt a bit like I was crying wolf.
Then a friend of mine, who also had cancer, noted that
1. This is not "crying wolf." This IS wolf.
and
2. People cannot help if they do not know what is going on
So, I slowly started to tell people.
I continue to be amazed by the support we received. It came from places I never would have guessed or have thought to ask for. I am also amazed by the reactions we received. Though there are some reactions that made me uncomfortable, those were truly few and far between. People were incredibly supportive and positive and did not make me feel pathetic.
In this blog are the messages that I sent to a growing support system as I went on this wild ride. I appreciate and relied on all the support I received, and felt so blessed as I traveled along.
I learned that there is just alot of love in the world.
Hope all is well with you, and happy reading!
Tuesday, September 30, 2008
Good news from followup tests, and some songs
Hi,
I've been getting some questions about how the CT scan turned out (well), as well as other things, so thought I would intrude on all of you with a follow-up message and a gift.
Overall, life has returned to a new normal. I really appreciate your interest and concern and thoughts. The post-chemo part of the story might sound familiar, especially if you have been down this road yourself or accompanied someone else, maybe not with cancer, but with another medical issue. Even though the medical tests aren't fun, they are a sign that I've moved from the weird world of chemo to experiencing things that are familiar to others. That feels good, as if I am re-entering the real world.
Thank you for your support during the process, and, now, for helping us return to "normal" lives. A few weeks after my last chemo, I had all my tests. They include
- a CT of chest, abs and pelvis. This was the main test where they look for any sign of cancer. And, whew, this was clear. So far, so good.
- a bone density test, because all these drugs can do a number on your bone density. Think, osteoporosis. But, no alarms there.
- genetic testing (found nothing of note)
- baseline blood tests, so that they know what is "normal" for me and can monitor when anything goes up or down
- pelvic ultrasound, because breast-colon-ovarian cancers sometimes go together and I was worried about ovarian next. I'm still working on figuring this one out, because there currently are no good tests for catching ovarian early. But at least nothing showed on the ultrasound so there is no urgency
- and, finally, getting my port removed. This, for me, marked the end of my chemo. When I had it put in, last December, that felt like the true beginning of chemo and I cried through the entire procedure. For the removal, I got the same team, and they remembered me. Oh well. It was a better experience this time. I even got a fancy johnny as a gift from a friend, and wearing that into the procedure felt like I was wrapped in a big hug.
The main two lingering effects that I've noticed are neuropathy and chemo brain. The neuropathy is in my fingers and toes. It primarily makes me prone to dropping things - of course, always at awkward times - and makes it more difficult to do anything that requires fine motor skills, like buttoning buttons or picking up something small. Still, not a major complaint. And, the chemo brain is probably poetic justice, as I have always been really impatient with slow thinkers and forgetful people. So, now I get to live a bit in those shoes!
Oh, and at the risk of oversharing, I did sail into menopause, which is a trip unto itself.
The biggest annoyance is that I find that I am still a bit shell-shocked. A piece of me worries that bad news is lurking around some dark corner, but nonetheless, I'm happy to be getting my energy back, and I'm feeling great. It is wild to get through a day without needing a nap. I actually made pickles the other day and was happily surprised to realize that I still had energy to do other things!
I'm continuing with acupuncture and yoga. I'm starting to look more closely at nutrition. I figure, I can't control much, but if what I eat makes a difference, I'll give it a go. If you thought I was a picky eater before, than hang on for my new level of pickiness! As for activities, I'm trying to make decisions to do things that give me energy, not just what I think I should do. Like everyone, sometimes I'm good at this, and sometimes not.
Oh, I'll share one little tip, in case it is ever useful for you to pass along. When I finished chemo, the boys still had fears about my disappearing, getting sick, etc. Julie suggested and helped my (now) five-year-old throw an "end of chemo" dinner party for us (just the four of us, Julie and her husband). Julie took my son out to buy balloons for the dinner. He took all $4.00 from his savings bank and, after much deliberation about what would be the best present, bought a tiara for me. It was a great time, and it really helped the boys to move forward and be kids again.
So, life goes on. I continue to be so appreciative to all of you for carrying us through all this. As a token of my appreciation, I'd like to share these songs with you.
An amazing local singer and songwriter, Anna Huckabee Tull, wrote these songs and is the singer and one of the musicians on the recordings. Collaborating with her to write the songs was an amazing process. She interviewed me, and I rambled on. There was so much in the experience of having cancer and chemo -- so much crap, so much good, so many messages to take away and changes to me and my life. I couldn't sort through it all in my head. After we talked, it felt like I was handing everything over to her -- all my experiences and fears and feelings -- and trusting to her take care of all of them. I walked away from those conversations feeling lighter and hopeful of the future, whatever it may bring. That was great.
Later, when I heard the songs, it felt like she somehow sorted through all the jumble and made some sense out of all my confusion. I am thrilled with what she created.
These songs are really personal to me, but because you've shared so much with me, I want to share them with you, too. Besides, I shared all the other nutty songs that we running through my head during the past year!
This first song is "From the Inside." It reflects what it felt like going through chemo. It is long and slow and sometimes lonely. However, there is also a fullness to it, and a sense of support and hope running through it. There are overlapping voices in it, just like all the different voices and feelings that were simultaneously going on inside my head. And by the end, it is strong. Though I can't speak to Anna's experience in writing this, she noted that this one was a relatively long, drawn out process and took quite a bit of work as it unfolded.
Here is the link to "From the Inside":
http://www.customcraftedsongs.com/files/fromtheinside.mp3
The second song is called "The Days of your Opening." It is more upbeat and comparatively fast-moving.To me, it reflects the positive elements that came from going through chemo and the potential of the days to come. Again, I can't speak to Anna's experience in writing this, but she mentioned that, after writing the first song, this one just popped out. Sort of like, you have to go through the "work" to get to the sunshine on the other side (my words, not hers). I guess like life.
Here is the link to "The Days of Your Opening":
http://www.customcraftedsongs.com/files/thedaysofyouropening.mp3
If you like her work, Anna's website is:
http://www.customcraftedsongs.com/
and you can sign up to receive her Song of the Month.
The lyrics to these songs are on her website, too. (I couldn't figure out how to attach them here.)
So, that is about it. As life moves ahead, I look forward to sharing good times together! In the meantime, I wish you loads of love and laughter in your life, every day.
Much love,
Marie
I've been getting some questions about how the CT scan turned out (well), as well as other things, so thought I would intrude on all of you with a follow-up message and a gift.
Overall, life has returned to a new normal. I really appreciate your interest and concern and thoughts. The post-chemo part of the story might sound familiar, especially if you have been down this road yourself or accompanied someone else, maybe not with cancer, but with another medical issue. Even though the medical tests aren't fun, they are a sign that I've moved from the weird world of chemo to experiencing things that are familiar to others. That feels good, as if I am re-entering the real world.
Thank you for your support during the process, and, now, for helping us return to "normal" lives. A few weeks after my last chemo, I had all my tests. They include
- a CT of chest, abs and pelvis. This was the main test where they look for any sign of cancer. And, whew, this was clear. So far, so good.
- a bone density test, because all these drugs can do a number on your bone density. Think, osteoporosis. But, no alarms there.
- genetic testing (found nothing of note)
- baseline blood tests, so that they know what is "normal" for me and can monitor when anything goes up or down
- pelvic ultrasound, because breast-colon-ovarian cancers sometimes go together and I was worried about ovarian next. I'm still working on figuring this one out, because there currently are no good tests for catching ovarian early. But at least nothing showed on the ultrasound so there is no urgency
- and, finally, getting my port removed. This, for me, marked the end of my chemo. When I had it put in, last December, that felt like the true beginning of chemo and I cried through the entire procedure. For the removal, I got the same team, and they remembered me. Oh well. It was a better experience this time. I even got a fancy johnny as a gift from a friend, and wearing that into the procedure felt like I was wrapped in a big hug.
The main two lingering effects that I've noticed are neuropathy and chemo brain. The neuropathy is in my fingers and toes. It primarily makes me prone to dropping things - of course, always at awkward times - and makes it more difficult to do anything that requires fine motor skills, like buttoning buttons or picking up something small. Still, not a major complaint. And, the chemo brain is probably poetic justice, as I have always been really impatient with slow thinkers and forgetful people. So, now I get to live a bit in those shoes!
Oh, and at the risk of oversharing, I did sail into menopause, which is a trip unto itself.
The biggest annoyance is that I find that I am still a bit shell-shocked. A piece of me worries that bad news is lurking around some dark corner, but nonetheless, I'm happy to be getting my energy back, and I'm feeling great. It is wild to get through a day without needing a nap. I actually made pickles the other day and was happily surprised to realize that I still had energy to do other things!
I'm continuing with acupuncture and yoga. I'm starting to look more closely at nutrition. I figure, I can't control much, but if what I eat makes a difference, I'll give it a go. If you thought I was a picky eater before, than hang on for my new level of pickiness! As for activities, I'm trying to make decisions to do things that give me energy, not just what I think I should do. Like everyone, sometimes I'm good at this, and sometimes not.
Oh, I'll share one little tip, in case it is ever useful for you to pass along. When I finished chemo, the boys still had fears about my disappearing, getting sick, etc. Julie suggested and helped my (now) five-year-old throw an "end of chemo" dinner party for us (just the four of us, Julie and her husband). Julie took my son out to buy balloons for the dinner. He took all $4.00 from his savings bank and, after much deliberation about what would be the best present, bought a tiara for me. It was a great time, and it really helped the boys to move forward and be kids again.
So, life goes on. I continue to be so appreciative to all of you for carrying us through all this. As a token of my appreciation, I'd like to share these songs with you.
An amazing local singer and songwriter, Anna Huckabee Tull, wrote these songs and is the singer and one of the musicians on the recordings. Collaborating with her to write the songs was an amazing process. She interviewed me, and I rambled on. There was so much in the experience of having cancer and chemo -- so much crap, so much good, so many messages to take away and changes to me and my life. I couldn't sort through it all in my head. After we talked, it felt like I was handing everything over to her -- all my experiences and fears and feelings -- and trusting to her take care of all of them. I walked away from those conversations feeling lighter and hopeful of the future, whatever it may bring. That was great.
Later, when I heard the songs, it felt like she somehow sorted through all the jumble and made some sense out of all my confusion. I am thrilled with what she created.
These songs are really personal to me, but because you've shared so much with me, I want to share them with you, too. Besides, I shared all the other nutty songs that we running through my head during the past year!
This first song is "From the Inside." It reflects what it felt like going through chemo. It is long and slow and sometimes lonely. However, there is also a fullness to it, and a sense of support and hope running through it. There are overlapping voices in it, just like all the different voices and feelings that were simultaneously going on inside my head. And by the end, it is strong. Though I can't speak to Anna's experience in writing this, she noted that this one was a relatively long, drawn out process and took quite a bit of work as it unfolded.
Here is the link to "From the Inside":
http://www.customcraftedsongs.com/files/fromtheinside.mp3
The second song is called "The Days of your Opening." It is more upbeat and comparatively fast-moving.To me, it reflects the positive elements that came from going through chemo and the potential of the days to come. Again, I can't speak to Anna's experience in writing this, but she mentioned that, after writing the first song, this one just popped out. Sort of like, you have to go through the "work" to get to the sunshine on the other side (my words, not hers). I guess like life.
Here is the link to "The Days of Your Opening":
http://www.customcraftedsongs.com/files/thedaysofyouropening.mp3
If you like her work, Anna's website is:
http://www.customcraftedsongs.com/
and you can sign up to receive her Song of the Month.
The lyrics to these songs are on her website, too. (I couldn't figure out how to attach them here.)
So, that is about it. As life moves ahead, I look forward to sharing good times together! In the meantime, I wish you loads of love and laughter in your life, every day.
Much love,
Marie
Tuesday, June 24, 2008
Chemo 12 of 12: The end of chemo feels a bit anti-climactic
The boys and I went to Bermuda over Father's Day weekend. It was a nice trip, though my husband couldn't join us because his passport expired. He learned this when he checked in at the airport. I learned this when I was already in Bermuda, looking forward to his arrival. I had been with the boys for two days, having breakfast as they were raising Cain in the restaurant. The manager came to the table to tell us that "our other party would not be joining us." The only thing louder than my shock was the gasp from everyone else in the resort, who realized I'd be alone with the two kids for a few more days. One gentleman stopped by our table to say that he was about to have his second child and was very scared.
Whoops. It's been that kind of a year! But my mother-in-law volunteered to join us at the last minute. Yes, I was panicked at the thought of being alone with two active boys for the whole weekend! It wasn't quite the family vacation we planned, but, as I'm learning, things can go so far from plan. It was still beautiful and fun, and we returned home just in time for my last chemo.
I got the continuous infusion pump removed on Thursday, marking the end of my chemo. I thought I would be doing my little woo-hoo happy dance now, and I am, a bit. It is a weird feeling, to be done with this. I feel a bit at loose ends. I guess that is normal, though. It just all feels a bit anti-climactic, and I'm not quite sure why. A bit of a downer.
Of course, I am dealing with the usual after-effects of chemo. I'm glad to be done because the neuropathy is getting worse, which is to be expected. I can't feel my toes, and living in the land of Legos-on-the-floor, that is a mixed blessing! There is the usual nausea, general blek feeling, intestinal stuff, all of which should pass. (ha ha -- a little colon humor there).
But these downer feelings, I'm having trouble dealing with. I'm typically pretty good at looking at the bright side of things, and I can do that, I just can't "feel" it.
For example, immense gratitude gets me through alot, and I do still feel that. For example, I'm grateful that it is me and not one of the kids. I often think that, if it was one of the kids, I would pray that there was some way that I could trade places with them. So, maybe I AM trading places with them, and they don't ever have to go through this. I regularly see people who, on a given dimension, have it harder than I do. For example, this week alone, I met a woman with cancer and kids younger than mine. I met people who can't walk or go to the bathroom on their own, both things I regularly give thanks for. I mean, just the simple act of getting up to get my own drink of water is HUGE. I'm grateful for the interactions I get to have -- I had a wonderful phone conversation on Friday, for example, that lifted me up.
Maybe I'll feel differently after the CT scan (in two weeks). If that is clear, maybe I'll feel some euphoria. Or relief. Or maybe chemo is my new "known world" and now I'm entering the world of the unknown. Plus, I know enough folks who have had their cancer return, or, like me, have had more than one cancer, so I'm under no illusions that this is the end of the road. So, really, all I (or anyone) can do is to take things one at a time, and that has to be enough. In a way, it really is, as each day truly feels like a gift. I admit, that is hard to remember when one of my children wakes up at 5 am, ready to greet the day! Still, to be able to get up at 5 am is a blessing in itself.
I guess I'll just move through this and see where it takes me. Sitting with these feelings is a challenge for me.
I always thought that an experience like this would be a life-changing event. A friend of mine, who is a hospice nurse, once told me that people don't necessarily become more enlightened; usually, they become more of themselves. I definitely don't feel more enlightened, but maybe I have become more of myself. Who knows?
Here are three things, though, that I'd like to share as I sign off on these regular e-mails.
Physically
Get tested. In my experience, cancer doesn't hurt in its early stages. But, that is the time when you need to spot it in order to eradicate it from your body. So, if you've been putting off that colonoscopy, mammogram, whatever test, do it. It does take time, and we are all busy, but believe me, chemo is much more of a time sync, and you don't want to go there! But, if you do find yourself there, it is do-able.
Spiritually
This has definitely strengthened my belief in a higher power. The way things came along at just the right time, the way events just seemed to work together...all that could not have been orchestrated by me. The power of prayer has really helped to sustain me at times, too.
But, even if you don't believe in God, I have to put in a pitch for the power of the collective. You can feel it when you have a coffee with a good friend and walk away feeling happy and energized. That is a feeling, an energy, you can generate together, not alone. During this period, the power of everyone, together, supporting me and our little family through this was like the energy of meeting one good friend, magnified. It created a strong web that continues to carry us along. It is a tangible feeling, and I hope you have that in your life, too.
Emotionally
Yes, I am addressing emotions last because I hate to address my emotions. It is such a messy area; anyone who has seen me try and organize my clutter knows that I don't like to tackle a mess alone! I can't even begin to describe my gratitude for your company as I navigate the funky emotions I've encountered along this journey. I've found some things I'd like to hold onto, and will work to do so. I want you to know that your presence, whether in person, over the phone, over e-mail or over the cosmos, is so strong and touches me so deeply that I can't describe it.
Thank you for being there. You have made a huge difference and an immense impact. I don't know how to show it, but maybe I can pay it forward, and I look forward to sharing good times with you.
For now, though, I'm just hanging out. Thanks for hanging out with me, too, in this ultra-weird place!
Love, Marie
Whoops. It's been that kind of a year! But my mother-in-law volunteered to join us at the last minute. Yes, I was panicked at the thought of being alone with two active boys for the whole weekend! It wasn't quite the family vacation we planned, but, as I'm learning, things can go so far from plan. It was still beautiful and fun, and we returned home just in time for my last chemo.
I got the continuous infusion pump removed on Thursday, marking the end of my chemo. I thought I would be doing my little woo-hoo happy dance now, and I am, a bit. It is a weird feeling, to be done with this. I feel a bit at loose ends. I guess that is normal, though. It just all feels a bit anti-climactic, and I'm not quite sure why. A bit of a downer.
Of course, I am dealing with the usual after-effects of chemo. I'm glad to be done because the neuropathy is getting worse, which is to be expected. I can't feel my toes, and living in the land of Legos-on-the-floor, that is a mixed blessing! There is the usual nausea, general blek feeling, intestinal stuff, all of which should pass. (ha ha -- a little colon humor there).
But these downer feelings, I'm having trouble dealing with. I'm typically pretty good at looking at the bright side of things, and I can do that, I just can't "feel" it.
For example, immense gratitude gets me through alot, and I do still feel that. For example, I'm grateful that it is me and not one of the kids. I often think that, if it was one of the kids, I would pray that there was some way that I could trade places with them. So, maybe I AM trading places with them, and they don't ever have to go through this. I regularly see people who, on a given dimension, have it harder than I do. For example, this week alone, I met a woman with cancer and kids younger than mine. I met people who can't walk or go to the bathroom on their own, both things I regularly give thanks for. I mean, just the simple act of getting up to get my own drink of water is HUGE. I'm grateful for the interactions I get to have -- I had a wonderful phone conversation on Friday, for example, that lifted me up.
Maybe I'll feel differently after the CT scan (in two weeks). If that is clear, maybe I'll feel some euphoria. Or relief. Or maybe chemo is my new "known world" and now I'm entering the world of the unknown. Plus, I know enough folks who have had their cancer return, or, like me, have had more than one cancer, so I'm under no illusions that this is the end of the road. So, really, all I (or anyone) can do is to take things one at a time, and that has to be enough. In a way, it really is, as each day truly feels like a gift. I admit, that is hard to remember when one of my children wakes up at 5 am, ready to greet the day! Still, to be able to get up at 5 am is a blessing in itself.
I guess I'll just move through this and see where it takes me. Sitting with these feelings is a challenge for me.
I always thought that an experience like this would be a life-changing event. A friend of mine, who is a hospice nurse, once told me that people don't necessarily become more enlightened; usually, they become more of themselves. I definitely don't feel more enlightened, but maybe I have become more of myself. Who knows?
Here are three things, though, that I'd like to share as I sign off on these regular e-mails.
Physically
Get tested. In my experience, cancer doesn't hurt in its early stages. But, that is the time when you need to spot it in order to eradicate it from your body. So, if you've been putting off that colonoscopy, mammogram, whatever test, do it. It does take time, and we are all busy, but believe me, chemo is much more of a time sync, and you don't want to go there! But, if you do find yourself there, it is do-able.
Spiritually
This has definitely strengthened my belief in a higher power. The way things came along at just the right time, the way events just seemed to work together...all that could not have been orchestrated by me. The power of prayer has really helped to sustain me at times, too.
But, even if you don't believe in God, I have to put in a pitch for the power of the collective. You can feel it when you have a coffee with a good friend and walk away feeling happy and energized. That is a feeling, an energy, you can generate together, not alone. During this period, the power of everyone, together, supporting me and our little family through this was like the energy of meeting one good friend, magnified. It created a strong web that continues to carry us along. It is a tangible feeling, and I hope you have that in your life, too.
Emotionally
Yes, I am addressing emotions last because I hate to address my emotions. It is such a messy area; anyone who has seen me try and organize my clutter knows that I don't like to tackle a mess alone! I can't even begin to describe my gratitude for your company as I navigate the funky emotions I've encountered along this journey. I've found some things I'd like to hold onto, and will work to do so. I want you to know that your presence, whether in person, over the phone, over e-mail or over the cosmos, is so strong and touches me so deeply that I can't describe it.
Thank you for being there. You have made a huge difference and an immense impact. I don't know how to show it, but maybe I can pay it forward, and I look forward to sharing good times with you.
For now, though, I'm just hanging out. Thanks for hanging out with me, too, in this ultra-weird place!
Love, Marie
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