I appreciate all the gratitudes you are sharing with me. It is fun and energizing and I love that you have so many good things in your life. Thank you for sharing all that with me, or even just doing it on your own. Today, July 16, is officially the last of the 50-day celebration and it has been so fun to be partying with you!
If you sent money to Dana Farber (or anywhere else on my behalf) and I did NOT send a thank you note to you, please let me know. It just means that they didn't make the connection.
It has been fabulous to enjoy summer without doing chemo. I still go to Dana Farber once a month to get my port flushed. (I have a power port in my chest, which we use for anything for which you would normally use a vein. They flush it to keep it clean and clear.)
This past Tuesday was my port-flush day, but before going to Dana Farber, I went rowing, had lunch, and glanced at the New York Times. The front page showed a story about a woman with cancer in her retina, and she had to have her eye removed. One of my children looked at the post-op photo of her eye and asked me what someone would look like if they took out your eye. I don't know much about eyes, couldn't tell much from the photo, so our discussion was brief, and I headed out to DFCI.
While waiting for the elevator at DFCI, I started chatting with the woman standing next to me. She seemed to be about 65 years old, stood 5 feet tall, and had a slender build. As we spoke, I noticed her eyeglasses. The right lens was clear but the left lens appeared cloudy, like it needed a good cleaning. When she turned her head to look at the elevators, I suddenly saw behind her glasses and noticed that there was skin covering the spot where her eye once was. I guess our questions generated by the NYTimes news story were answered.
Going to a place like Dana Farber provides constant reminders of the many ways to have cancer. Of course, there are a myriad of other ways to be sick, too.
The flip side of this is that there are a myriad of ways to be well. Every patient I meet, who isn't exhausted beyond all belief, is pleasant, friendly and interesting. One told me her story about having lung cancer for the past five years. She was in her late sixties but looked at least 10 years younger and had a tough, street-smart way about her, like she would take crap from no one. Aside from cancer, she carried a toughness and optimism that many would envy.
Another woman had ovarian cancer and was off and on chemo as needed while enjoying her retirement and time with her husband and grandchildren. She had a joyous air about her, as if this were a visit to the dentist, an inconvenience in an otherwise pleasant day.
And the woman with one eye appears to focus on what she can see, rather than on what she can't.
All of these women, and so many others getting treatment, may be ill in some ways but well in so many others. They have a sense of humor, the ability to connect with others, appreciate nature, or share a cheerful word. We are each dealing with something and it is so easy to have that take over our lives, at least for me.
However, meeting all these folks reminds me that we are well in more ways than we are not-well. Their good health is contagious, and instead of being depressed by their illness, I walk away buoyed by what is well and strong in them. It carries not only them, but me as well.
I hope that you are able to find someone who generously shares their cheer and positive vibes, and that you always feel the good in your life and the ways in which you are strong and well. And that will be contagious, too!
Thank you again for your continued prayers as they carry me through the summertime, and sending much love and gratitude your way,
Marie
Showing posts with label port-a-cath. Show all posts
Showing posts with label port-a-cath. Show all posts
Monday, July 16, 2012
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
Subscribe to:
Posts (Atom)