It is not lost on me that this is Holy Week, and I hope you have a very blessed Seder or Easter (or both). And for those of you who celebrate neither, then simply a very blessed week!
I decided to write BEFORE chemo this time, because it has been such an AWESOME week and it is way more fun to spread that kind of positive energy!
I believe that several things that contributed to this most incredible week:
I am finally pulling my head out of the sand and noticing more of what is going on around me.
Two things stood out:
I read a book called Making Toast. It is written by a father who moved in and helped to care for the young children of his daughter, after she died suddenly at 38. It was not as depressing as it might sound. And a line from the book stood out (at the risk misquoting this):
"You are not the first family to experience this, and you are better equipped than most to handle it."
I feel like that is so true of our family. Though this path isn't easy, it is much harder for many others, and we are very aware of that.
And, the priest on Sunday asked us to pray for an 8-year-old with a brain tumor. THAT was sobering.
So, I think I feel better because life is finally not "all about me."
My energy level is back to normal, and I've been thrilled to do very normal things. For example, we were invited to a birthday dinner party, said yes, actually were able to go, had a great time, and stayed till the end. On top of that, Tiron and I didn't think about cancer once that whole night. It was so fun; I am still carrying the glow from that!
I started my Chinese tea. It is truly (and maybe literally) wild. It looks like a bag full of things that my kids might gather from the woods: tree bark and twigs and dried mushrooms. You put it in a glass or ceramic pot, cover it with water, and cook it down slowly for about 3 hours. It leaves a woodsy smell in the house, which I don't mind, and I don't even mind the taste. The most difficult part is that I need to drink it at night, three hours after eating anything, so I am no longer snacking after dinner.
I wasn't sure whether this was doing anything, but at some point I realized that, since I started drinking the tea, my chest pains disappeared! Yay! (Both this time and two years ago, after starting chemo, I had strong chest pains every night.)
I started acupuncture. Since my surgery, I couldn't get off my duff to make any appointments with any kind of complementary medicine, including the acupuncturist I love (Kiiko Matsumoto). So Marilyn booked an acupuncture appointment for me with her acupuncturist (Marisa of Newton Center Acupuncture), then picked me up in her car and drove me there.
After the first appointment, I wasn't sure that anything shifted. But within an hour, I told someone to buzz off (in stronger language), which was really unlike me, and really freeing! Hmmmm. I ended up going back to Marisa (again, mostly out of laziness), and that time, within an hour afterwards (warning: possible oversharing!), food starting moving really quickly through my system. It was really wild. I do want to return to my own acupuncturist, but I have to say that I will first return to Marisa, mostly out of curiosity. I want to see what might happen next!
I have a couple other complementary medicine avenues I am doing as well, and lots of aromatherapy.
I ran into old friends, everywhere, and learned of some really cool connections among friends. All week, I kept running into people I've thought about but haven't seen in years. After a few days of this, it started to feel like that old show "This is Your Life." What a wild ride. I really loved seeing everyone!
I look pretty normal. Well, as normal as I look. For those of you who live outside Boston, I look pretty much the same as I always do. That helps!
The only downer -- and I'm not complaining! -- was that I have this sore throat that I can't seem to shake. I am one of those people who never gets sick (if you don't count cancer - ha ha) so I have a new appreciation for what everyone else goes through when they get a cold. For those of you who get colds, my apologizes if I haven't been as sympathetic to you as you needed! I had no idea you were that uncomfortable!
Our six-year-old son asked this week why we aren't making dinner for our friends, because they are making dinners for us. (By the way, the kids totally eat all their vegetables if someone else cooks them! Go figure.)
We all really appreciate all your help and support, and our son voiced the sentiment that I've struggled with recently: How to give back in some way? You are all carrying us, in so many ways, and it would be wonderful to share all that we receive back with you.
So I will leave you with one more high point from this week: Someone told me, "I live my life differently because of you." That touched me and I carry it with me.
I hope you are enjoying life sooo much -- there are so many cool things that are going on, and you are part of all of this uplifting energy.
Again, thank you for your prayers and good thoughts and for banding together to help us all. It truly makes a difference in so many ways for us, and I pray it is all coming back to you, and more!
Much love,
Marie
Monday, March 29, 2010
Wednesday, March 24, 2010
Making change (joke)
The Dalai Lama is visiting New York and decides to stop at a vegetarian hot dog stand. He says to the vendor, “Make me one with everything,” and hands him a $20 bill.
The vendor ignores the spiritual part of the request but prepares his feast on a bun, hands it to him and turns to the next customer.
His Holiness leans forward and asks for his change.
“Ah,” says the vendor, “change must come from within.”
The vendor ignores the spiritual part of the request but prepares his feast on a bun, hands it to him and turns to the next customer.
His Holiness leans forward and asks for his change.
“Ah,” says the vendor, “change must come from within.”
Wednesday, March 17, 2010
Second round of chemo is better, plus doing Chinese teas
Chemo again yesterday. I need to drink more water, for sure, but otherwise, this week is better than my last treatment.
After the prayer service last week, it felt like I was magically transported from shaky ground, over a huge crevice in the earth, and then placed onto solid ground. It was a huge shift that you all made for me, so I know that helped make this better.
On Monday, I did a one-day trip to North Bennington, Vermont (3.5 hours each way in the pouring rain) to see this Vietnamese doctor. I wondered if I was crazy, desperate, doing a pilgrimage....in any case, off I went. I met with him, and by taking my pulse and looking at my tongue (I love the non-invasive approach of Chinese medicine!), he determined that my liver, spleen and heart were weak, and suggested that I cut back on the chemo if possible, to give them a chance to strengthen. I've been having lots of chest pains since I started chemo (and I had these when I did chemo two years ago), so it made sense to me. And he gave me a huge bag of Chinese teas for me to make (and drink) on my off-chemo weeks.
On Tuesday, I got to my appointment and, instead of seeing the doctor, I got her nurse. I had never worked with or even met or heard of her nurse before, not once in the three years I've been going there. And, one of the things that makes this bearable is having folks who know me and know my history. This change didn't feel good.
But, I was very wrong. She was great. I got to talk with her about all my yukky side effects from last time, she suggested a 20% lower dose of all the chemos. a new drug regimen for the days following my chemo to help with the nausea. I still hate taking pills, but she and others convinced me to give these a go.
When I got to the infusion room and saw my chemo nurse, she asked me how my appointment went. Apparently, they all discussed how I would handle seeing the nurse instead of the doctor, and weren't sure it would fly. I guess they know me well.
Chemo, other than the drugs, was like a little party -- thank you to everyone who was there!
Again, I wear the chemo pump for two days, and that in itself makes me feel yukky. Plus it has an odor about it. But I also recognize that alot of this is attitude and mine seems to be shifting a bit.
OH, then this morning, I was going to cranial sacral therapy at 10:00. At 9:30, my sorry butt was still in bed. Showering is a huge hassle with this pump hanging off my chest, but I didn't want anyone to do any kind of body work on me without showering! So, I was going to be late. I'll call her. Computer crashed, so can't look up her number. Ugh. Got to the car. Battery dead. I switched to Tiron's car, and finally got there with 10 minutes left in my appointment!
So, life is challenging, but the appointment was across the street from a chocolate store, and I got to get the kids their "Nut Free Easter bunnies" and other treats, so that is big plus. I am so conflicted about them eating sugar.....
Thank you for your support and caring. It's all coming right back to you.
Love, Marie
After the prayer service last week, it felt like I was magically transported from shaky ground, over a huge crevice in the earth, and then placed onto solid ground. It was a huge shift that you all made for me, so I know that helped make this better.
On Monday, I did a one-day trip to North Bennington, Vermont (3.5 hours each way in the pouring rain) to see this Vietnamese doctor. I wondered if I was crazy, desperate, doing a pilgrimage....in any case, off I went. I met with him, and by taking my pulse and looking at my tongue (I love the non-invasive approach of Chinese medicine!), he determined that my liver, spleen and heart were weak, and suggested that I cut back on the chemo if possible, to give them a chance to strengthen. I've been having lots of chest pains since I started chemo (and I had these when I did chemo two years ago), so it made sense to me. And he gave me a huge bag of Chinese teas for me to make (and drink) on my off-chemo weeks.
On Tuesday, I got to my appointment and, instead of seeing the doctor, I got her nurse. I had never worked with or even met or heard of her nurse before, not once in the three years I've been going there. And, one of the things that makes this bearable is having folks who know me and know my history. This change didn't feel good.
But, I was very wrong. She was great. I got to talk with her about all my yukky side effects from last time, she suggested a 20% lower dose of all the chemos. a new drug regimen for the days following my chemo to help with the nausea. I still hate taking pills, but she and others convinced me to give these a go.
When I got to the infusion room and saw my chemo nurse, she asked me how my appointment went. Apparently, they all discussed how I would handle seeing the nurse instead of the doctor, and weren't sure it would fly. I guess they know me well.
Chemo, other than the drugs, was like a little party -- thank you to everyone who was there!
Again, I wear the chemo pump for two days, and that in itself makes me feel yukky. Plus it has an odor about it. But I also recognize that alot of this is attitude and mine seems to be shifting a bit.
OH, then this morning, I was going to cranial sacral therapy at 10:00. At 9:30, my sorry butt was still in bed. Showering is a huge hassle with this pump hanging off my chest, but I didn't want anyone to do any kind of body work on me without showering! So, I was going to be late. I'll call her. Computer crashed, so can't look up her number. Ugh. Got to the car. Battery dead. I switched to Tiron's car, and finally got there with 10 minutes left in my appointment!
So, life is challenging, but the appointment was across the street from a chocolate store, and I got to get the kids their "Nut Free Easter bunnies" and other treats, so that is big plus. I am so conflicted about them eating sugar.....
Thank you for your support and caring. It's all coming right back to you.
Love, Marie
Sunday, March 14, 2010
The prayer service was power and life-altering
The prayer service last Sunday evening was beyond words. At first, I didn't want to write anything about it, because I didn't want to trap it in the realm of words (if that makes sense).
And after that, I realized that I don't really have the words to describe it. Moving, overwhelming, beautiful and full of hope are descriptions that come to mind, plus a whole host of other emotions that are so intertwined that I can't sort through them individually.
Thank you for creating that. For everyone who came from near and far, and for everyone who did their part from where they were: Thank you. I continue to be amazed at the power of this group.
One specific outcome (and there were many): During the service, I was praying for light leading to my next steps. After everyone left, and there were just a few of us hanging out, Jamie (a woman from the church who I hadn't previously met in person) asked me about my "story." So, I dove into that, trying to keep it brief and relatively interesting so that I didn't bore this new friend. She kept saying, "I want to introduce you to Liz. I don't know why -- I just feel like I need to introduce you." And Maria (who made this whole thing happen) kept saying, "Didn't you go to New York? Or isn't there something about D.C.?"
Turns out, Liz had the surgery that I want to have in D.C.! It isn't really done in Boston and the more I talk with my Boston doctors, the more I doubt my instincts to do it. It isn't like there are alot of folks who have had this particular surgery, either. But, Liz had it! It was like an answer to my prayers, and I got to meet Liz this week (who is doing wonderfully).
As I said, this is just one of so many outcomes. I want to hang onto that great feeling that I had after the service, and I somehow want to spread it around. I hope that all of you who participated in some way felt that, too, and can carry that with you.
Chemo on Tuesday.
Love, Marie
And after that, I realized that I don't really have the words to describe it. Moving, overwhelming, beautiful and full of hope are descriptions that come to mind, plus a whole host of other emotions that are so intertwined that I can't sort through them individually.
Thank you for creating that. For everyone who came from near and far, and for everyone who did their part from where they were: Thank you. I continue to be amazed at the power of this group.
One specific outcome (and there were many): During the service, I was praying for light leading to my next steps. After everyone left, and there were just a few of us hanging out, Jamie (a woman from the church who I hadn't previously met in person) asked me about my "story." So, I dove into that, trying to keep it brief and relatively interesting so that I didn't bore this new friend. She kept saying, "I want to introduce you to Liz. I don't know why -- I just feel like I need to introduce you." And Maria (who made this whole thing happen) kept saying, "Didn't you go to New York? Or isn't there something about D.C.?"
Turns out, Liz had the surgery that I want to have in D.C.! It isn't really done in Boston and the more I talk with my Boston doctors, the more I doubt my instincts to do it. It isn't like there are alot of folks who have had this particular surgery, either. But, Liz had it! It was like an answer to my prayers, and I got to meet Liz this week (who is doing wonderfully).
As I said, this is just one of so many outcomes. I want to hang onto that great feeling that I had after the service, and I somehow want to spread it around. I hope that all of you who participated in some way felt that, too, and can carry that with you.
Chemo on Tuesday.
Love, Marie
Wednesday, March 3, 2010
Prayer service invitation; chemo continues to be hard
Maria and Todd Giatrelis have generously set up a prayer service at St. Joseph's Parish in Belmont for this Sunday evening, March 7, at 6:00. It will immediately follow the 5 pm. Mass.
This prayer service includes gospel readings, music and a special blessing -- the Sacrament of the Sick. Yes, this is the exact thing that I had been running from, but I'm learning that, no matter how fast you run, sometimes, things catch you!
If you are able to join us, St. Joseph's is at
354 Waverly Street
Belmont, MA 02478
617-484-0279
It is not far from Belmont Center, and you can park in the lot or on the street. You may dress any way that feels comfortable to you (blue jeans are fine). Kids are welcome; this is a family-friendly church. My kids won't be there, though.
If you cannot join us, please feel free to pray wherever you are.
Thank you.
This chemo has been especially hard for me. It is only week one, and I didn't even get all the drugs this time, and I am still sick from it. I don't know how I would do the full dose, because right now, it feels like I am living only to do chemo and unable to do anything else. Not only am I physically ill from this, I've caught a cold (which I never do), and a piece of my skin literally ripped open.
I am seriously considering quitting it; my oncologist suggested a one-week hiatus and then checking in again. Kudos to all of you who have gone through this!!!
Marie
P.S. RSVP not required for the prayer service but nice to know if you are coming. And while it starts at six, feel free to arrive when it fits your schedule. I expect it will last 30 - 45 minutes?
This prayer service includes gospel readings, music and a special blessing -- the Sacrament of the Sick. Yes, this is the exact thing that I had been running from, but I'm learning that, no matter how fast you run, sometimes, things catch you!
If you are able to join us, St. Joseph's is at
354 Waverly Street
Belmont, MA 02478
617-484-0279
It is not far from Belmont Center, and you can park in the lot or on the street. You may dress any way that feels comfortable to you (blue jeans are fine). Kids are welcome; this is a family-friendly church. My kids won't be there, though.
If you cannot join us, please feel free to pray wherever you are.
Thank you.
This chemo has been especially hard for me. It is only week one, and I didn't even get all the drugs this time, and I am still sick from it. I don't know how I would do the full dose, because right now, it feels like I am living only to do chemo and unable to do anything else. Not only am I physically ill from this, I've caught a cold (which I never do), and a piece of my skin literally ripped open.
I am seriously considering quitting it; my oncologist suggested a one-week hiatus and then checking in again. Kudos to all of you who have gone through this!!!
Marie
P.S. RSVP not required for the prayer service but nice to know if you are coming. And while it starts at six, feel free to arrive when it fits your schedule. I expect it will last 30 - 45 minutes?
Wednesday, February 24, 2010
First chemo session, again
Chemo happened yesterday. I thought I would be pleased to get this underway, but mostly, I feel bummed out.
The folks at MGH are really really nice, and I feel very cared for. It amazes me how "normal" many cancer patients look. If they weren't waiting for a doctor or hooked up to an IV, I would never know that most of them are patients. Of course, there are always patients who arrive in wheelchairs or on stretchers, and I say a little prayer for them, and give heartfelt thanks that I am not in that position.
Your prayers were again so effective: The doctors decided on a chemo and we all felt the plan was reasonable. Thank you for your prayers for that. That conversation was less stressful than I expected! Sometimes they provide info and we need to make the decision on the spot: It is really hard to make those kinds of decisions in the moment, and having them think it through in advance makes it much easier.
This chemo regimen is different than my last. Thankfully, because that last one didn't do the trick! This one is called FOLFORI (pronounced Fol-fury) and typically the first-line drug used in Europe. I kind of like that. They added one other drug to the mix, but I've pushed that name out of my brain, trying to pretend that I am a normal person and not really taking chemo.
They are still waiting for some genetic testing results on my tumor, and once those return, we will add another drug to the regimen. So I guess I started out with "chem lite."
Marilyn, Tiron and I headed to the infusion unit, where I got hooked up to an IV pole and the stuff drips into my veins over about two hours. It is freaky that so many people there remembered me. And I got my old nurse! I was thrilled with that.
This process involves alot of waiting, and the waiting is really hard for me. I feel like, if my time is limited, I don't want to spend it waiting for nothing. But, wait you do. My doctor took two hours before she got around to writing the chemo prescription. Next time, I'll ask her to do it while I am in her office. I forgot that little trick.
We got seats with a fantastic view of Boston, and were apparently the envy of some other patients. One guy complained to his nurse that he didn't have a better seat. Strange to have envy enter that kind of situation, but human nature is everywhere. Or, as my friend the hospice nurse says, "The closer people get to death, the more of their true selves come out."
The chemo was hard on my body, so they had to give me other drugs to counteract that. I watched half of Julie and Julia, which was nice and relaxing and soothing in a weird way. And then it was all done.
I got hooked up to my continuous infusion pump to wear home. This enables me to go home and keep getting chemo while I go about my day. If you see me on some Wednesdays and Thursday mornings, you will see me carrying a bag and perhaps you will hear the whirring of the pump. I try to remain grateful for this invention that lets me go home, rather than spend two days in the hospital, but I have to say, I truly resent it. It gets removed on Thursday, I get a shot on Friday to bump up my white cell count, and the cycle starts again in two weeks.
How many sessions? The bummer is that, this is for the foreseeable future. So, I can't do a count down. The doctor said that the chemo would need to get rid of ALL the cancer cells. She also said it is unlikely to do that. I think of it like killing cockroaches: It just takes one to get that whole colony up and running again. I try to view this like I have a chronic condition, but my head isn't quite there yet.
The good news is, they are willing to run these treatments around the rest of my life. So I can skip sessions to travel, for example, which I couldn't do before.
I'm excited about this, because I think that will help the quality of our family life. I'm also really excited because I want to go to the Hippocrates Health Institute in Florida, and this will enable me to take time off to do that.
The kids have been fantastic. Not that they haven't been scared or worried, but they are really rallying when we need them to. and Tiron is keeping all my medical records straight, when all I want to do is toss them in the trash.
Please keep your prayers coming! I will take any prayers, but someone advised me to be specific, so here it is:
That the chemo kills the cancer cells and is tolerable.
That the boys (including Tiron) grow in inner strength and cheer.
Much love to all of you.
Marie
The folks at MGH are really really nice, and I feel very cared for. It amazes me how "normal" many cancer patients look. If they weren't waiting for a doctor or hooked up to an IV, I would never know that most of them are patients. Of course, there are always patients who arrive in wheelchairs or on stretchers, and I say a little prayer for them, and give heartfelt thanks that I am not in that position.
Your prayers were again so effective: The doctors decided on a chemo and we all felt the plan was reasonable. Thank you for your prayers for that. That conversation was less stressful than I expected! Sometimes they provide info and we need to make the decision on the spot: It is really hard to make those kinds of decisions in the moment, and having them think it through in advance makes it much easier.
This chemo regimen is different than my last. Thankfully, because that last one didn't do the trick! This one is called FOLFORI (pronounced Fol-fury) and typically the first-line drug used in Europe. I kind of like that. They added one other drug to the mix, but I've pushed that name out of my brain, trying to pretend that I am a normal person and not really taking chemo.
They are still waiting for some genetic testing results on my tumor, and once those return, we will add another drug to the regimen. So I guess I started out with "chem lite."
Marilyn, Tiron and I headed to the infusion unit, where I got hooked up to an IV pole and the stuff drips into my veins over about two hours. It is freaky that so many people there remembered me. And I got my old nurse! I was thrilled with that.
This process involves alot of waiting, and the waiting is really hard for me. I feel like, if my time is limited, I don't want to spend it waiting for nothing. But, wait you do. My doctor took two hours before she got around to writing the chemo prescription. Next time, I'll ask her to do it while I am in her office. I forgot that little trick.
We got seats with a fantastic view of Boston, and were apparently the envy of some other patients. One guy complained to his nurse that he didn't have a better seat. Strange to have envy enter that kind of situation, but human nature is everywhere. Or, as my friend the hospice nurse says, "The closer people get to death, the more of their true selves come out."
The chemo was hard on my body, so they had to give me other drugs to counteract that. I watched half of Julie and Julia, which was nice and relaxing and soothing in a weird way. And then it was all done.
I got hooked up to my continuous infusion pump to wear home. This enables me to go home and keep getting chemo while I go about my day. If you see me on some Wednesdays and Thursday mornings, you will see me carrying a bag and perhaps you will hear the whirring of the pump. I try to remain grateful for this invention that lets me go home, rather than spend two days in the hospital, but I have to say, I truly resent it. It gets removed on Thursday, I get a shot on Friday to bump up my white cell count, and the cycle starts again in two weeks.
How many sessions? The bummer is that, this is for the foreseeable future. So, I can't do a count down. The doctor said that the chemo would need to get rid of ALL the cancer cells. She also said it is unlikely to do that. I think of it like killing cockroaches: It just takes one to get that whole colony up and running again. I try to view this like I have a chronic condition, but my head isn't quite there yet.
The good news is, they are willing to run these treatments around the rest of my life. So I can skip sessions to travel, for example, which I couldn't do before.
I'm excited about this, because I think that will help the quality of our family life. I'm also really excited because I want to go to the Hippocrates Health Institute in Florida, and this will enable me to take time off to do that.
The kids have been fantastic. Not that they haven't been scared or worried, but they are really rallying when we need them to. and Tiron is keeping all my medical records straight, when all I want to do is toss them in the trash.
Please keep your prayers coming! I will take any prayers, but someone advised me to be specific, so here it is:
That the chemo kills the cancer cells and is tolerable.
That the boys (including Tiron) grow in inner strength and cheer.
Much love to all of you.
Marie
Monday, February 22, 2010
Healing well and chemo soon
Thank you for all your prayers and good thoughts. I am healing amazingly well from my most recent surgery, and I got the staples removed today. Yay! I even walked to Harvard Square and back, a total distance of about 2 miles.
The good news is that they got all the "big" tumor out, with clean margins. Whew. The not great news is that there are more tumor cells in there. Some are attached, some are floating around.
Which means.....next up is chemo.
It was clear that I would need to do chemo anyway, but I was kind of hoping that there would be no sign of disease remaining. Oh well.
So.....given how powerful all your prayers and good intentions were for the surgery, I wonder if I can ask you for another round?The doctors need to decide which chemo to use. There are a few options, and I would love it if they picked the right one the first time around. (Obviously, the chemo I did two years ago didn't quite do the trick!)
Thank you for your prayers and good intentions on our behalf!!!! You can be sure that I am sending good vibes back to you.
With love,
Marie
The good news is that they got all the "big" tumor out, with clean margins. Whew. The not great news is that there are more tumor cells in there. Some are attached, some are floating around.
Which means.....next up is chemo.
It was clear that I would need to do chemo anyway, but I was kind of hoping that there would be no sign of disease remaining. Oh well.
So.....given how powerful all your prayers and good intentions were for the surgery, I wonder if I can ask you for another round?The doctors need to decide which chemo to use. There are a few options, and I would love it if they picked the right one the first time around. (Obviously, the chemo I did two years ago didn't quite do the trick!)
Thank you for your prayers and good intentions on our behalf!!!! You can be sure that I am sending good vibes back to you.
With love,
Marie
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