Hi everyone,
Since last Sept, I have been hoping to be able to send this happy message. I am almost completely done with treatment and moving into follow- up mode!
In these two weeks, I'm doing tons of tests, but the one I was waiting for was the CT scan to see if any little buggers are still in my bod. And, none showed up! Yay!
I am thrilled to be able to share this news, though, of course, I am cautiously optimistic. I know you can relate to that. As fate would have it, I walked out of that meeting with my good news and and ran slam bang into a woman there dealing with the return of her husband's cancer. A little reminder. Oh well. I'm still enjoying the moment, especially knowing that, if it returns, I would be really bummed out if I didn't enjoy the NOW!
I don't know where to begin to say thank you for your support. You guys were there from the raw beginning, when I was asking for advice on how to prep for a colonoscopy! Your presence is way more huge than I can even begin to get my head, heart, arms around. And, it's almost midnight and I'm tired but wanted to share this while it was still new news.
Much love and all good wishes for a most awesome summer,
Marie
Tuesday, July 8, 2008
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
Tuesday, June 10, 2008
Chemo 11 of 12: Mixed feelings and a chemo spill
Wow -- almost to the end of chemo! It feels like such a long road, and probably feels even longer to you. Kind of like "Are were there YET?" I do appreciate your being here with me, in any capacity that you are able. Though journey does feel long, I can't imagine how long it would feel if I also felt alone.
Of course, realizing that I am reaching the end of treatment has both physical and emotional components. I'm so eager to be done; I feel like just skipping the last treatment and saying, "okay, I've done enough." Except that if this ever returned, I would feel like I didn't do all that I could have to keep it away.
At the same time, it is hard to believe that regular visits to the hospital will not be part of my life. I can't even think that far ahead.
On the physical front, this week's chemo session went much more like my earlier ones, and I'm feeling okay....just the usual mild nausea, fatigue and neuropathy. Yay! Being an "eat dessert first" kind of person (even if my taste buds currently distort the taste of dessert these days), I booked a short vacation for my husband, the kids and me for my "off weekend", just before my last chemo. I couldn't wait to start celebrating. Well, actually, the driving factor was more about taking a vacation while I could, before any other "bad" news comes along.
The doctors appear to be optimistic, though. Dr. N is the Fellow on my team, and he is great, cheerily asking me about my plans for after I chemo. We have plans for celebrating the boys' birthday, visiting friends, heading to Maine, but mostly, frankly, my plan was to hunker down and continuously whisper something like, "I hope it's really gone. I hope it's really gone." Maybe toss in a talisman or two.
He kept repeating that they feel like this will be cured, and, while I am scared to be that optimistic, it was good to hear.
My red and white cell counts were good (yay) and he shared my liver numbers, which seem to be a marker of how my body is handling the chemo. Over the past two treatments, my liver numbers have moved into the range of normal. They found that to be interesting and good news. I mentally noted that that was since the "healing session." I'm not claiming cause and effect: Though I believe in the power of prayer, I also believe that cause and effect can be a complicated equation. But it is an interesting observation. And hey, if the healing session could do that, maybe chemo can work as well?
Anyway, I originally met Dr. N when he was a Resident at Dana Farber and I was looking into getting my treatment there. He moved to MGH as a Fellow and joined my team in January, so he's been with me from the start. It turns out that the end of his Fellowship coincides with the end of my treatment. I love it when life is poetic like that.
On the scary radiation and chemo front:
I went to the dentist this week. They wanted to do an x-ray, and I asked a million questions before I let them take it. Given the amount of radiation I've had so far (and will get in the future, with my ongoing CT scans), it seems funny to focus on one dental x-ray.
On the chemo front:
Then, during chemo, I got to experience a CHEMO SPILL! Okay, that kind of freaked me out. You may have noticed another post where I recently, jokingly, took a picture of the Chemo Spill Kit. Sometimes, I think that one of God's favorite tools is foreshadowing. At the time, I thought that the chemo spill package was funny. Now, joke is on me. ha ha
Before I get chemo, they insert a small needle into the port in my chest, much like they would insert a needle into your arm to draw blood. This particular needle has a tube dangling from it. First, the nurse draws blood through the tube. A few hours later, she attaches an IV to it to administer all the drugs.
The first set of drugs are "pre-meds", which include steriods, anti-nausea drugs, and Benadryl. I used to get these in pill form, but since my big "bad" session, I get them in IV. So, they hook these up to the tube, one after the other, and I am tethered to an IV pole. After they disconnect these, I usually take the opportunity to go to the bathroom, get a cookie, and any other wandering I might like to do without my IV pole. When I return, the tubes are then attached to the chemo drugs (which then hang on an IV pole).
This time, I had a different nurse, and when wandered off, she laid the chemo IV tube down on the armrest of my chair. When I returned, I sat in my chair and waited for her. I was eating my cookie, watching my little movie, and I felt something wet on my arm. The saline and chemo were pouring out of the tube. Well, now I know the rate at which it goes into my veins. It was all over the armrest, pillow, chair, basically, everywhere.
Yes, I did freak out. It was surreal to look at the nurses, in their protective gear, as they were telling me it is no big deal.
After I washed up, I was ushered to another room and they basically closed off that room as if it were a nuclear waste zone. Lovely.
Thankfully, the rest of the session was uneventful, and I was able to WALK out this time. Yay!
So, life goes on. I got to celebrate my birthday, and I cannot believe how grateful I am to be able to do that. My four-year-old graduated from Beginners (think, pre-Kindergarten) this week. I was thrilled to be there, chemo pump, gloves and all. Of course, I was all weepy but I have to say it was a really sweet ceremony and he had a great time.
When I went to get my pump removed later that day, my four-year-old came along and wore a Buzz Lightyear costume. He was in character during all our time in the Infusion unit (where lots of nice people gave him lollipops and ice cream and paper airplanes) and as soon as we left the hospital, he removed the costume and became himself again. I guess he is my superhero!
Thanks to you all, too, for being my heroes, carrying me along and sharing your magic. Just a bit longer (knock wood, fingers crossed).....I am eager to be done but I think the thing I will miss most is the opportunity to connect with you.
Love, Marie
Current song that I can't get out of my head is Thunder Road by Bruce Springsteen, which I find full of hope and optimism
Of course, realizing that I am reaching the end of treatment has both physical and emotional components. I'm so eager to be done; I feel like just skipping the last treatment and saying, "okay, I've done enough." Except that if this ever returned, I would feel like I didn't do all that I could have to keep it away.
At the same time, it is hard to believe that regular visits to the hospital will not be part of my life. I can't even think that far ahead.
On the physical front, this week's chemo session went much more like my earlier ones, and I'm feeling okay....just the usual mild nausea, fatigue and neuropathy. Yay! Being an "eat dessert first" kind of person (even if my taste buds currently distort the taste of dessert these days), I booked a short vacation for my husband, the kids and me for my "off weekend", just before my last chemo. I couldn't wait to start celebrating. Well, actually, the driving factor was more about taking a vacation while I could, before any other "bad" news comes along.
The doctors appear to be optimistic, though. Dr. N is the Fellow on my team, and he is great, cheerily asking me about my plans for after I chemo. We have plans for celebrating the boys' birthday, visiting friends, heading to Maine, but mostly, frankly, my plan was to hunker down and continuously whisper something like, "I hope it's really gone. I hope it's really gone." Maybe toss in a talisman or two.
He kept repeating that they feel like this will be cured, and, while I am scared to be that optimistic, it was good to hear.
My red and white cell counts were good (yay) and he shared my liver numbers, which seem to be a marker of how my body is handling the chemo. Over the past two treatments, my liver numbers have moved into the range of normal. They found that to be interesting and good news. I mentally noted that that was since the "healing session." I'm not claiming cause and effect: Though I believe in the power of prayer, I also believe that cause and effect can be a complicated equation. But it is an interesting observation. And hey, if the healing session could do that, maybe chemo can work as well?
Anyway, I originally met Dr. N when he was a Resident at Dana Farber and I was looking into getting my treatment there. He moved to MGH as a Fellow and joined my team in January, so he's been with me from the start. It turns out that the end of his Fellowship coincides with the end of my treatment. I love it when life is poetic like that.
On the scary radiation and chemo front:
I went to the dentist this week. They wanted to do an x-ray, and I asked a million questions before I let them take it. Given the amount of radiation I've had so far (and will get in the future, with my ongoing CT scans), it seems funny to focus on one dental x-ray.
On the chemo front:
Then, during chemo, I got to experience a CHEMO SPILL! Okay, that kind of freaked me out. You may have noticed another post where I recently, jokingly, took a picture of the Chemo Spill Kit. Sometimes, I think that one of God's favorite tools is foreshadowing. At the time, I thought that the chemo spill package was funny. Now, joke is on me. ha ha
Before I get chemo, they insert a small needle into the port in my chest, much like they would insert a needle into your arm to draw blood. This particular needle has a tube dangling from it. First, the nurse draws blood through the tube. A few hours later, she attaches an IV to it to administer all the drugs.
The first set of drugs are "pre-meds", which include steriods, anti-nausea drugs, and Benadryl. I used to get these in pill form, but since my big "bad" session, I get them in IV. So, they hook these up to the tube, one after the other, and I am tethered to an IV pole. After they disconnect these, I usually take the opportunity to go to the bathroom, get a cookie, and any other wandering I might like to do without my IV pole. When I return, the tubes are then attached to the chemo drugs (which then hang on an IV pole).
This time, I had a different nurse, and when wandered off, she laid the chemo IV tube down on the armrest of my chair. When I returned, I sat in my chair and waited for her. I was eating my cookie, watching my little movie, and I felt something wet on my arm. The saline and chemo were pouring out of the tube. Well, now I know the rate at which it goes into my veins. It was all over the armrest, pillow, chair, basically, everywhere.
Yes, I did freak out. It was surreal to look at the nurses, in their protective gear, as they were telling me it is no big deal.
After I washed up, I was ushered to another room and they basically closed off that room as if it were a nuclear waste zone. Lovely.
Thankfully, the rest of the session was uneventful, and I was able to WALK out this time. Yay!
So, life goes on. I got to celebrate my birthday, and I cannot believe how grateful I am to be able to do that. My four-year-old graduated from Beginners (think, pre-Kindergarten) this week. I was thrilled to be there, chemo pump, gloves and all. Of course, I was all weepy but I have to say it was a really sweet ceremony and he had a great time.
When I went to get my pump removed later that day, my four-year-old came along and wore a Buzz Lightyear costume. He was in character during all our time in the Infusion unit (where lots of nice people gave him lollipops and ice cream and paper airplanes) and as soon as we left the hospital, he removed the costume and became himself again. I guess he is my superhero!
Thanks to you all, too, for being my heroes, carrying me along and sharing your magic. Just a bit longer (knock wood, fingers crossed).....I am eager to be done but I think the thing I will miss most is the opportunity to connect with you.
Love, Marie
Current song that I can't get out of my head is Thunder Road by Bruce Springsteen, which I find full of hope and optimism
Sunday, May 25, 2008
Chemo 10 of 12: The power of prayer and Ms Webster's dog
I feel like the finish line is in sight. I hate to count on that, but I am hopeful.
Thank you for all your notes of support. Even when I can't answer them, I love getting them and reading and re-reading them. Thank you for your prayers and hope and love.
This chemo round, thankfully, went much better than my last one, and more like my earlier ones, with one exception: Before they gave me chemo, they filled me so much anti-nausea medication that I slept through the whole thing. Again, I was wheeled out of there, barely conscious, but at least I didn't get sick.
In the days following this chemo, my neuropathy and fatigue returned, kind of unwanted but familiar companions, so that is reassuring. What used to be "mild nausea" after chemo is now more insistent, but still manageable. Mostly, I'm in bed from Tuesday - Sunday. If I absolutely have to go out, you'll see me roaming the streets, trying my best to stay awake. On those days, I don't remember most of what I say or do, so you'll need to repeat those things to me!
On Thursday morning, my four-year-old son took me to see and hold Ms. Webster's dog. Now, I don't actively dislike dogs, but I'm not much of a dog person. My son heard that dogs help people get well, and he wanted this for me. So, I held Ms. Webster's dog.
Later that day, I had my pump removed. When my son got home and saw me without the pump, he was overjoyed. His eyes were filled with pure light. He kept exclaiming, "I KNEW IT! I KNEW IT! I just KNEW Ms. Webster's dog would make you well!"
Who am I to argue? Earlier last week, I attended a Pentacostal .... something. Revival? Prayer Service? Healing? Not sure what to call it. It falls into the category of "I'll try anything." I have to say, it was wild. and Powerful.
It was led by a southern white preacher (complete with toupee) and his supportive blonde wife (sans the Tammy Faye makeup). I was a little distracted by the way he cupped his left hand behind his left ear everytime he said "Hallelujah!" From the crowd, there were lots of Hallelujah's and Amen's, waving hands, some dancing / swaying in the aisles, others kneeling and bowing low in prayer. As a Catholic, it is definitely a different kind of service for me, but I am curious about and open to all religions. So while I couldn't get into it in the same way as many of the other folks, I stayed to see what this was all about, as much as I could learn. And, there may be some healing involved! It was worth a try.
It was held in a church in Central Square. Actually, it was originally scheduled to be held in the Charles Hotel in Harvard Square, which, weirdly, gave it a bit of credibility in my eyes. But, earlier that day, they moved the venue to a church in Central Square, which somehow seemed more fitting. Since I was already planning to go, I hopped the T to Central Square and found the church.
(For anyone not familiar with parts of Cambridge, I would describe the Charles Hotel as respectable and higher-end, and Central Square as an area that is diverse and comfortable for anyone who lives on the fringes of society.)
I wandered up the aisle on the right side of the center, and took a seat on the aisle of a pew a few rows back from the front. This way, if I stayed, my friend, Lisa, could find me. Or, I could easily escape if I needed to! From here, I could see most of the action, while keeping a comfortable distance from all the fervor.
Soon, Tyler joined me. He seemed to be a very nice young man from Texas. His wife was home experiencing the first trimester of her first pregnancy, and he couldn't find the friends he was supposed to meet. So we sat together. He practices a religion where you face each other and participate by sharing your thoughts and ideas, so he was out of his comfort zone as well.
THEN they asked everyone to hug and greet everyone else who was nearby. Yikes. I first turned to Tyler and said, "This is weird for me." But everyone seemed to be pretty nice, I decided to think of it as a "sign of peace" thing (from the Catholic Mass), and it did get things moving. Since this seemed like the kind of service where it was okay to talk to each other, Tyler and I talked a little bit. He also did some texting and writing, and I noticed that the folks in the front row were taking photos with their iPhones. The open use of technology made me more comfortable, and I relaxed and decided that anything I did would be probably socially acceptable here.
Lisa soon joined me and the three of us kind of got into the service in our own way. The music was long and powerful, and I started to feel a bit enveloped by the whole thing, in a good way. Sort of like being surrounded by this puffy cloud. I had to leave after two hours (and people think that Catholic Masses are long!), so I said goodbye to Tyler (who said a nice prayer over me) and to Lisa (who sent me off with good vibes). I took the T home from Central Square (completely forgetting that my white cells counts are low and I shouldn't expose myself to the germs of the general public -- oh well).
When I got home, Lisa called me on my cellphone. They had reached the "healing" portion of the service, and invited those in attendance to call anyone who needed healing but couldn't be there. So she called. What a sweetheart! I couldn't hear the words very clearly, but I stayed on the line. And, weirdly, this intermittent pain in my liver, which I had since my MRI in late November, just vanished. It went away in a way that it hadn't before. Just gone. I'm both suspicious and loving it. Mostly loving it.
I wanted to say, "Just call this number, and for 99 cents a minute, you can be HEALED!"
Between that and Ms. Webster's dog, I'm doing pretty well. I wasn't supposed to get this pain-in-the-butt disease anyway, so who is to say what works, right? Frankly, chemo feels a bit like voodoo to me, and it has uncomfortable side effects to boot. But...I'm doing that, too. When you don't know what to do, best to cover all the bases.
At the core, though, this reaffirmed for me the power of prayer or any kind of intention, as well as the presence of angels in any form. Thank you for being part of all that, in such a huge way. Every good vibe you are sending this way has its own impact, and all the ones together are making positive changes, both for me and, I would bet, for our planet. Every little bit of love and peace helps.
I hope you are having a truly lovely Memorial Day weekend, remembering all who sacrificed so much for us, and, at the same time, enjoying the start of a beautiful summer season because, well, we can!
Love, Marie
Thank you for all your notes of support. Even when I can't answer them, I love getting them and reading and re-reading them. Thank you for your prayers and hope and love.
This chemo round, thankfully, went much better than my last one, and more like my earlier ones, with one exception: Before they gave me chemo, they filled me so much anti-nausea medication that I slept through the whole thing. Again, I was wheeled out of there, barely conscious, but at least I didn't get sick.
In the days following this chemo, my neuropathy and fatigue returned, kind of unwanted but familiar companions, so that is reassuring. What used to be "mild nausea" after chemo is now more insistent, but still manageable. Mostly, I'm in bed from Tuesday - Sunday. If I absolutely have to go out, you'll see me roaming the streets, trying my best to stay awake. On those days, I don't remember most of what I say or do, so you'll need to repeat those things to me!
On Thursday morning, my four-year-old son took me to see and hold Ms. Webster's dog. Now, I don't actively dislike dogs, but I'm not much of a dog person. My son heard that dogs help people get well, and he wanted this for me. So, I held Ms. Webster's dog.
Later that day, I had my pump removed. When my son got home and saw me without the pump, he was overjoyed. His eyes were filled with pure light. He kept exclaiming, "I KNEW IT! I KNEW IT! I just KNEW Ms. Webster's dog would make you well!"
Who am I to argue? Earlier last week, I attended a Pentacostal .... something. Revival? Prayer Service? Healing? Not sure what to call it. It falls into the category of "I'll try anything." I have to say, it was wild. and Powerful.
It was led by a southern white preacher (complete with toupee) and his supportive blonde wife (sans the Tammy Faye makeup). I was a little distracted by the way he cupped his left hand behind his left ear everytime he said "Hallelujah!" From the crowd, there were lots of Hallelujah's and Amen's, waving hands, some dancing / swaying in the aisles, others kneeling and bowing low in prayer. As a Catholic, it is definitely a different kind of service for me, but I am curious about and open to all religions. So while I couldn't get into it in the same way as many of the other folks, I stayed to see what this was all about, as much as I could learn. And, there may be some healing involved! It was worth a try.
It was held in a church in Central Square. Actually, it was originally scheduled to be held in the Charles Hotel in Harvard Square, which, weirdly, gave it a bit of credibility in my eyes. But, earlier that day, they moved the venue to a church in Central Square, which somehow seemed more fitting. Since I was already planning to go, I hopped the T to Central Square and found the church.
(For anyone not familiar with parts of Cambridge, I would describe the Charles Hotel as respectable and higher-end, and Central Square as an area that is diverse and comfortable for anyone who lives on the fringes of society.)
I wandered up the aisle on the right side of the center, and took a seat on the aisle of a pew a few rows back from the front. This way, if I stayed, my friend, Lisa, could find me. Or, I could easily escape if I needed to! From here, I could see most of the action, while keeping a comfortable distance from all the fervor.
Soon, Tyler joined me. He seemed to be a very nice young man from Texas. His wife was home experiencing the first trimester of her first pregnancy, and he couldn't find the friends he was supposed to meet. So we sat together. He practices a religion where you face each other and participate by sharing your thoughts and ideas, so he was out of his comfort zone as well.
THEN they asked everyone to hug and greet everyone else who was nearby. Yikes. I first turned to Tyler and said, "This is weird for me." But everyone seemed to be pretty nice, I decided to think of it as a "sign of peace" thing (from the Catholic Mass), and it did get things moving. Since this seemed like the kind of service where it was okay to talk to each other, Tyler and I talked a little bit. He also did some texting and writing, and I noticed that the folks in the front row were taking photos with their iPhones. The open use of technology made me more comfortable, and I relaxed and decided that anything I did would be probably socially acceptable here.
Lisa soon joined me and the three of us kind of got into the service in our own way. The music was long and powerful, and I started to feel a bit enveloped by the whole thing, in a good way. Sort of like being surrounded by this puffy cloud. I had to leave after two hours (and people think that Catholic Masses are long!), so I said goodbye to Tyler (who said a nice prayer over me) and to Lisa (who sent me off with good vibes). I took the T home from Central Square (completely forgetting that my white cells counts are low and I shouldn't expose myself to the germs of the general public -- oh well).
When I got home, Lisa called me on my cellphone. They had reached the "healing" portion of the service, and invited those in attendance to call anyone who needed healing but couldn't be there. So she called. What a sweetheart! I couldn't hear the words very clearly, but I stayed on the line. And, weirdly, this intermittent pain in my liver, which I had since my MRI in late November, just vanished. It went away in a way that it hadn't before. Just gone. I'm both suspicious and loving it. Mostly loving it.
I wanted to say, "Just call this number, and for 99 cents a minute, you can be HEALED!"
Between that and Ms. Webster's dog, I'm doing pretty well. I wasn't supposed to get this pain-in-the-butt disease anyway, so who is to say what works, right? Frankly, chemo feels a bit like voodoo to me, and it has uncomfortable side effects to boot. But...I'm doing that, too. When you don't know what to do, best to cover all the bases.
At the core, though, this reaffirmed for me the power of prayer or any kind of intention, as well as the presence of angels in any form. Thank you for being part of all that, in such a huge way. Every good vibe you are sending this way has its own impact, and all the ones together are making positive changes, both for me and, I would bet, for our planet. Every little bit of love and peace helps.
I hope you are having a truly lovely Memorial Day weekend, remembering all who sacrificed so much for us, and, at the same time, enjoying the start of a beautiful summer season because, well, we can!
Love, Marie
Sunday, May 11, 2008
Chemo 9 of 12: Did I get the right chemo?
This was definitely the most difficult chemo treatment so far.
For those of you who told me that they are having a hard time listening to all this, you might want to skip this message.
If you are still here, cool. And thank you. I think my theme song of the week is I'm Still Standing by Elton John. Lyrics are at the end of this for those of you who do not know the song. I put the words in bold that keep going through my head.
There are three ways that I look at the past week:
The Power of Vision
Early on, I think I told you that my vision of chemo was that you walk cheerily into chemo, you get chemo, you get violently ill, then you get wheeled out, hunched over in a wheelchair. Then you feel sick for days on end.
Well, visions are powerful. That was my experience this week.
Maybe I've just been lucky that it took so long before I got this ill from chemo. But wow. And yuck.
The Power of Tears
Here is another angle. I went into chemo just needing to have a good cry. But there never seemed to be a good time to do that. First I was busy getting my vital signs taken and blood tests done, moving from one place to another for those. Then I met with the doctors. While I did tell them that I felt sad, it just didn't seem like the right time to break down in tears. I wanted to have a good, long, cry, and the appointments are kind of time-limited.
So, I figured that I would just have my time during chemo. But, that didn't happen for a number of reasons. Not that I wasn't encouraged. Mary, who was visiting me, kept insisting that I revisit how I was feeling, not to ignore it. But I kept pushing her off. And Eleanor, my friend the therapist, of course, agreed, but, again, I wouldn't really have any of it.
Now, if the floodgates are going to burst, and you don't give them an outlet, they burst through a million other ways. In my case, immediately after I finished chemo, I got sick. Every five minutes. Non-stop. Ugh. First time that happened. So maybe it was all that emotion trying to get out.
Thank you to Barbara, who continued to offer to drive me home between my runs to the bathroom. And a second thank you to her for calling Tiron to come and get me instead!
The Power of Chemo
This session's reaction was wildly unusual for me. AND, neuropathy is a known and expected side effect of the drugs I am on. In fact, it is cumulative, meaning that it is expected to get worse with each treatment. And, mine has. Until now. This time, I had little to no neuropathy. I can stick my hand in a freezer and it feels cold but not painful. I can scoop out handfuls of ice cubes and only feel the cold, no pain. Further, I'm having no fatigue.
The lack of side effects was the most worrisome part for the doctors and nurses. So, we spent a bit of time doing more blood tests and calling the drug company, checking to see whether I got the right chemo. While the results aren't definitive, it appears that I probably got the right chemo but just have a weird set of side effects this time. The drug company admits that they have never heard of these reactions to my particular regimen. Sigh. Always an adventure. Makes it a bit scary to go in next time, for sure. I didn't realize before this how much trust is involved in the whole process.
So, it is one of those three things, maybe a combination, maybe none of the above.
I ran across this quote this week, from the webpage of Dr. Michele Reiss:
Life isn't about waiting for the storm to pass; it's about learning to dance in the rain.
I'm definitely still learning, because frankly, I realize that I'm mostly waiting for the storm to pass! Thanks for hanging in there with me, and for bringing me provisions! :-)
Love, Marie
I'm Still Standing
by Elton John& Bernie Taupin
You could never know what it's like
Your blood like winter freezes just like ice
And there's a cold lonely light that shines from you
You'll wind up like the wreck you hide behind that mask you use
And did you think this fool could never win
Well look at me, I'm coming back again
I got a taste of love in a simple way
And if you need to know while I'm still standing you just fade away
Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind
I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah
Once I never could hope to win
You starting down the road leaving me again
The threats you made were meant to cut me down
And if our love was just a circus you'd be a clown by now
For those of you who told me that they are having a hard time listening to all this, you might want to skip this message.
If you are still here, cool. And thank you. I think my theme song of the week is I'm Still Standing by Elton John. Lyrics are at the end of this for those of you who do not know the song. I put the words in bold that keep going through my head.
There are three ways that I look at the past week:
The Power of Vision
Early on, I think I told you that my vision of chemo was that you walk cheerily into chemo, you get chemo, you get violently ill, then you get wheeled out, hunched over in a wheelchair. Then you feel sick for days on end.
Well, visions are powerful. That was my experience this week.
Maybe I've just been lucky that it took so long before I got this ill from chemo. But wow. And yuck.
The Power of Tears
Here is another angle. I went into chemo just needing to have a good cry. But there never seemed to be a good time to do that. First I was busy getting my vital signs taken and blood tests done, moving from one place to another for those. Then I met with the doctors. While I did tell them that I felt sad, it just didn't seem like the right time to break down in tears. I wanted to have a good, long, cry, and the appointments are kind of time-limited.
So, I figured that I would just have my time during chemo. But, that didn't happen for a number of reasons. Not that I wasn't encouraged. Mary, who was visiting me, kept insisting that I revisit how I was feeling, not to ignore it. But I kept pushing her off. And Eleanor, my friend the therapist, of course, agreed, but, again, I wouldn't really have any of it.
Now, if the floodgates are going to burst, and you don't give them an outlet, they burst through a million other ways. In my case, immediately after I finished chemo, I got sick. Every five minutes. Non-stop. Ugh. First time that happened. So maybe it was all that emotion trying to get out.
Thank you to Barbara, who continued to offer to drive me home between my runs to the bathroom. And a second thank you to her for calling Tiron to come and get me instead!
The Power of Chemo
This session's reaction was wildly unusual for me. AND, neuropathy is a known and expected side effect of the drugs I am on. In fact, it is cumulative, meaning that it is expected to get worse with each treatment. And, mine has. Until now. This time, I had little to no neuropathy. I can stick my hand in a freezer and it feels cold but not painful. I can scoop out handfuls of ice cubes and only feel the cold, no pain. Further, I'm having no fatigue.
The lack of side effects was the most worrisome part for the doctors and nurses. So, we spent a bit of time doing more blood tests and calling the drug company, checking to see whether I got the right chemo. While the results aren't definitive, it appears that I probably got the right chemo but just have a weird set of side effects this time. The drug company admits that they have never heard of these reactions to my particular regimen. Sigh. Always an adventure. Makes it a bit scary to go in next time, for sure. I didn't realize before this how much trust is involved in the whole process.
So, it is one of those three things, maybe a combination, maybe none of the above.
I ran across this quote this week, from the webpage of Dr. Michele Reiss:
Life isn't about waiting for the storm to pass; it's about learning to dance in the rain.
I'm definitely still learning, because frankly, I realize that I'm mostly waiting for the storm to pass! Thanks for hanging in there with me, and for bringing me provisions! :-)
Love, Marie
I'm Still Standing
by Elton John& Bernie Taupin
You could never know what it's like
Your blood like winter freezes just like ice
And there's a cold lonely light that shines from you
You'll wind up like the wreck you hide behind that mask you use
And did you think this fool could never win
Well look at me, I'm coming back again
I got a taste of love in a simple way
And if you need to know while I'm still standing you just fade away
Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind
I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah
Once I never could hope to win
You starting down the road leaving me again
The threats you made were meant to cut me down
And if our love was just a circus you'd be a clown by now
Tuesday, May 6, 2008
Chemo Spill Kit
No one but me seemed to notice this box in the infusion room. It just felt so foreboding. Two days later when I returned, it was in the same place, but open, with the contents spread on the counter. The nurse said, "oh, one of the patients took a photo of that two days ago." hmmmm, that was me!
Grace and Compassion
Hi guys,
Okay, put a question out to the Universe....watch out for the answer!
I was wondering why I felt such intense compassion when I am in more sorrow, rather than in everyday life.
Today, I got this in my e-mail. I'm excerpting the relevant parts:
Another teaching of sadness is compassion for others who are in pain, because it is only in feeling our own pain that we can really understand and allow for someone else’s. Sadness is something we all go through, and we all learn from it and are deepened by its presence in our lives. While our own individual experiences of sadness carry with them unique lessons, the implications of what we learn are universal. The wisdom we gain from going through the process of feeling loss, heartbreak, or deep disappointment gives us access to the heart of humanity.
Even though this kind of serendipity happens all the time, I am constantly amazed.
Love,
Marie
Okay, put a question out to the Universe....watch out for the answer!
I was wondering why I felt such intense compassion when I am in more sorrow, rather than in everyday life.
Today, I got this in my e-mail. I'm excerpting the relevant parts:
Another teaching of sadness is compassion for others who are in pain, because it is only in feeling our own pain that we can really understand and allow for someone else’s. Sadness is something we all go through, and we all learn from it and are deepened by its presence in our lives. While our own individual experiences of sadness carry with them unique lessons, the implications of what we learn are universal. The wisdom we gain from going through the process of feeling loss, heartbreak, or deep disappointment gives us access to the heart of humanity.
Even though this kind of serendipity happens all the time, I am constantly amazed.
Love,
Marie
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