Thank you for staying tuned and for your patience. The past two weeks have been filled with doctor appointments as we sort through this.
The MRI confirmed that the lesion on my liver is indeed there and cancerous. I considered my liver to be a "no-fly zone" when it came to cancer. Looks like we have a violator.
The next step is to decide what to do about it. It is located near / on the edge of the liver, near the diaphragm.
Luckily, I get to choose what is behind Door #1, Door #2, or Door #3. I suppose I can also pick what is in the envelope that Carol Merrill is holding, some as-yet unrevealed goodie.
Here are the options as I see them:
Door #1: Stereotactic ablation
This radiological procedure, often used for liver lesions, applies heat or cold to freeze the lesion (think - like a wart). However, because of the location of mine, it is a bit more complicated to protect the diaphragm. Still, it is do-able.
Door #2: Proton beam radiation
My mental picture of this one is that they shoot a proton "bomb" filled with radiation into the lesion. Once it reaches the inside of the lesion, the proton is programmed to release its radiation. Very high-tech, and, as side effects go, minimal. It takes about 2 weeks of prep plus two weeks of treatment, then is done. It has been effective for lung lesions, but is still in the experimental phase for liver lesions. It doesn't sound like the most comfortable procedure, but it doesn't feel scary to me, other than the fact that there will be much radiation used, as well as a few CT scans (meaning more radiation) for guidance.
Door #3: Surgery
Those of you who have been following this saga for the past few years may remember the big-gun surgery that I talked about awhile ago. Though MGH, Dana Farber and Sloan Kettering don't yet do it, I could have it done in the D.C. area, Pittsburgh, central Mass and Europe. Makes it feel a bit exotic and almost sexy. THAT is how weird my world has become.
Here is how I think of this option -- they open you up, cut out everything they can find, "thin" the peritoneal fat, then pour hot chemo into your abdomen and massage it into every place possible. Then they close you up and turn you like a pig on a spit, so that the chemo flows into the nooks and crannies of your innards. You wake up with a minimum of 17 tubes sticking out of your body. As scary as that sounds, I considered that it would be scarier to wake up with no tubes, indicating that they couldn't do the full surgery. Anyway, the hospital stay is something like 4 - 6 weeks, followed by recovery at home. It does sound brutal, but it brings a possibility of a cure, which the others do not.
Oh, and as a bonus prize, no matter what door I pick, I get to return to chemo again!
Still, I do feel fortunate to have choices. That week in particular, when I was faced with the deaths of others who have so graciously handled all the crap that cancer deals, I am especiallly aware of the fact that I am lucky to still be walking on this earth.
I had this in mind when I walked past a man in Harvard Square holding a sign that said, "Cannot work due to disease." Wondering what he was facing, I decided to talk with him.
"The doctors found a spot on my liver and they need to biopsy it," he said.
I couldn't figure out how this kept him from working, and I am sure that showed on my face.
He continued, "It might be cancerous."
He started to describe the biopsy procedure. Even knowing the fear of facing the unknown, I had experienced too much this week and needed to consciously muster some patience for this.
I decided to tell him, "I have a lesion on my liver. And they know it is cancer." I tried to say it kindly.
And then I realized, he felt overwhelmed and completely alone, unable to connect with even another who is on that path. Not only was he lacking financial resources, he also lacked the inner resources to deal with whatever life threw his way. No amount of money would fix that.
I thought of the two people I know who died this week, how they were both younger than him, how they handled their situation with grace and strength. I thought of how their families and friends supported them so closely that the path was not just patient's but woven throughout all their lives, how they remain connected in spite of the risk of intense grief. I thought of how they carry that person with them in so many ways, how they help their love to endure, and how we all support each other as we face life's joys and challenges.
Of course, he could have been feeding me a line. My kids even said, "Did you see those muscles, Mom? How could he be homeless?"
Comparing my situation to the one he described, I feel fortunate indeed. Thank you for being open to us, for allowing us to impact you, and for hanging in there with us. And if you have any idea of how I can make this decision, let me know. I've never been good at Let's Make a Deal and can't even decide on dinner at times; how can I decide this!
Much love and laughter,
Marie
Showing posts with label radiation. Show all posts
Showing posts with label radiation. Show all posts
Thursday, July 28, 2011
Monday, January 12, 2009
Ms Radiation
My periodontist requested a full mouth x-ray. Just a routine thing -- they like to have new ones done every three to five years.
So I called the dentist's office to schedule it. The conversation went something like this:
"You don't need to make an appointment. You can come in anytime tomorrow," they said.
"No problem. I have a CT scan in the morning, but I can come in the afternoon. Just drop by anytime?"
Why on earth I mentioned the CT scan, who knows. Why would they care? But good thing, because the response was,
"Oh, we don't like to give you too much radiation in one day."
Yikes. I hadn't thought about that. Well, I did, but chose to ignore it, filing under the necessity of modern living.
"Okay....hmmm..." I looked at my calendar. I now wanted some distance between those two appointments. "How about early February?"
"Sure. February 5th?"
"Oh....I have a mammogram that day." What am I, Ms Radiation these days? This is kind of scary.
I think a bit then say, "This isn't urgent. Let's just do it in March. I'll give you a call."
Wow. Between all these tests, I'll be radiated from my pelvis up. Would it be called a "healthy glow"?
So I called the dentist's office to schedule it. The conversation went something like this:
"You don't need to make an appointment. You can come in anytime tomorrow," they said.
"No problem. I have a CT scan in the morning, but I can come in the afternoon. Just drop by anytime?"
Why on earth I mentioned the CT scan, who knows. Why would they care? But good thing, because the response was,
"Oh, we don't like to give you too much radiation in one day."
Yikes. I hadn't thought about that. Well, I did, but chose to ignore it, filing under the necessity of modern living.
"Okay....hmmm..." I looked at my calendar. I now wanted some distance between those two appointments. "How about early February?"
"Sure. February 5th?"
"Oh....I have a mammogram that day." What am I, Ms Radiation these days? This is kind of scary.
I think a bit then say, "This isn't urgent. Let's just do it in March. I'll give you a call."
Wow. Between all these tests, I'll be radiated from my pelvis up. Would it be called a "healthy glow"?
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
Wednesday, March 26, 2008
Radiation is off - cancelled altogether
I interrupt the regular every-other-week message for this special announcement: No more radiation treatments. At all.
Monday and Tuesday were really long days at the hospital. My white count just seemed to be dropping to the basement after each treatment. I ended up doing three treatments over two weeks. In the end, it was determined that radiation would likely do more harm to my bone marrow than good for my cancer prevention program, so we nixed it.
I was quite impressed with the team of doctors who came together at a moment's notice. That is always a bit daunting, to see them drop what they are doing and come from various corners of the hospital.
I'm still processing that meeting. I thought that low white count was a normal side effect of chemo. Apparently, I present this in an usual way. Lovely. As in, "I've honestly never seen this before. I'd like to stay involved to see how this turns out." Hmmm. Not a reassuring statement from a doctor, but good to know, and doesn't sound horrible horrible. Besides, my attitude is always that there is room for one more at the party, so any doctor who wants to be involved, come on in!
Speaking of more opinions, I learned that mine was a case study at Dana Farber because my case is unusual. I'll spare you the details, but I got to hear the ideas of the other doctors at the conference, so that was cool.
Anyway, change in plans. I start chemo again on April 8, back to my every-other-Tuesday regimen, followed by two days of continuous infusion chemo (and the pills, neuropathy, etc.). It's kind of the devil you know, and there is some comfort in that.
Sometimes, this path really stinks. I hate not knowing if I will be at the hospital one hour or eight hours. I hate wearing that pump. I hate the side effects of chemo. I hate having the energy to do only one thing each day. I hate that I see other people there who are having a hard time, and it breaks my heart that they have to go through that. I hate that I found the book Oliver's Story in the infusion room. (Oliver's Story is the sequel to Love Story, where the main female character dies of leukemia.) And I hate that I was compelled to read that book while I waited.
I hate that my kids are experiencing this through me, and that there are times that I can't do normal things with them. I hate that we can't plan ahead, even to have a playdate, because I seem to always get suddenly called into the hospital.
But, it is good that my schedule is flexible enough to tolerate long doctor appointments, that they have this traveling pump so I don't have to sit in a hospital room for two days to get the infusion, that there are drugs to help with the side effects, and that I am able to do one thing each day. It humbles me to see others in the waiting room. And I'm hoping that my kids, going through this, develop strength of character or some other positive attribute as a result.
I sometimes feel like I am rowing down a river with a strong current, and the river is filled with rocks, both seen and unseen. But if I pay attention, there are guides along the way.
The doctors have been really on top of all this, and they are great guides. I get to work with the Fellow I liked at Dana Farber -- he moved to MGH. The radiation oncologist is smart and caring, and today, I met the oncologist I'll see while mine is on maternity leave. I really like her. The hematologist I adore is staying involved. And I get to keep my chemo nurse through all this. Fortunately for me, she used all her vacation on her honeymoon so she will be here through my treatment. Yay! All these people listen really well and have insightful thoughts and experiences to share.
There is a person who works in the infusion room with the same last name that my older son had at his birth. Wild. On top of that, this fine gentleman at MGH taught me alot about meditation and breathing.
The other patients are also good guides, each in their own way. What a diverse world we live in!
So, while this path sometimes stinks, I am reminded on almost a moment-to-moment basis that it is so important to be in this moment, that we have this moment, and that is everything.
Thanks for listening to this saga. It has been a crazy two days. I hope that yours were more sane, but I suspect they were crazy in their own ways. I'll be back to you on April 8 or so!
Love, Marie
Monday and Tuesday were really long days at the hospital. My white count just seemed to be dropping to the basement after each treatment. I ended up doing three treatments over two weeks. In the end, it was determined that radiation would likely do more harm to my bone marrow than good for my cancer prevention program, so we nixed it.
I was quite impressed with the team of doctors who came together at a moment's notice. That is always a bit daunting, to see them drop what they are doing and come from various corners of the hospital.
I'm still processing that meeting. I thought that low white count was a normal side effect of chemo. Apparently, I present this in an usual way. Lovely. As in, "I've honestly never seen this before. I'd like to stay involved to see how this turns out." Hmmm. Not a reassuring statement from a doctor, but good to know, and doesn't sound horrible horrible. Besides, my attitude is always that there is room for one more at the party, so any doctor who wants to be involved, come on in!
Speaking of more opinions, I learned that mine was a case study at Dana Farber because my case is unusual. I'll spare you the details, but I got to hear the ideas of the other doctors at the conference, so that was cool.
Anyway, change in plans. I start chemo again on April 8, back to my every-other-Tuesday regimen, followed by two days of continuous infusion chemo (and the pills, neuropathy, etc.). It's kind of the devil you know, and there is some comfort in that.
Sometimes, this path really stinks. I hate not knowing if I will be at the hospital one hour or eight hours. I hate wearing that pump. I hate the side effects of chemo. I hate having the energy to do only one thing each day. I hate that I see other people there who are having a hard time, and it breaks my heart that they have to go through that. I hate that I found the book Oliver's Story in the infusion room. (Oliver's Story is the sequel to Love Story, where the main female character dies of leukemia.) And I hate that I was compelled to read that book while I waited.
I hate that my kids are experiencing this through me, and that there are times that I can't do normal things with them. I hate that we can't plan ahead, even to have a playdate, because I seem to always get suddenly called into the hospital.
But, it is good that my schedule is flexible enough to tolerate long doctor appointments, that they have this traveling pump so I don't have to sit in a hospital room for two days to get the infusion, that there are drugs to help with the side effects, and that I am able to do one thing each day. It humbles me to see others in the waiting room. And I'm hoping that my kids, going through this, develop strength of character or some other positive attribute as a result.
I sometimes feel like I am rowing down a river with a strong current, and the river is filled with rocks, both seen and unseen. But if I pay attention, there are guides along the way.
The doctors have been really on top of all this, and they are great guides. I get to work with the Fellow I liked at Dana Farber -- he moved to MGH. The radiation oncologist is smart and caring, and today, I met the oncologist I'll see while mine is on maternity leave. I really like her. The hematologist I adore is staying involved. And I get to keep my chemo nurse through all this. Fortunately for me, she used all her vacation on her honeymoon so she will be here through my treatment. Yay! All these people listen really well and have insightful thoughts and experiences to share.
There is a person who works in the infusion room with the same last name that my older son had at his birth. Wild. On top of that, this fine gentleman at MGH taught me alot about meditation and breathing.
The other patients are also good guides, each in their own way. What a diverse world we live in!
So, while this path sometimes stinks, I am reminded on almost a moment-to-moment basis that it is so important to be in this moment, that we have this moment, and that is everything.
Thanks for listening to this saga. It has been a crazy two days. I hope that yours were more sane, but I suspect they were crazy in their own ways. I'll be back to you on April 8 or so!
Love, Marie
Thursday, March 20, 2008
Radiation cancelled for this week
Thank you for the prayers and good wishes and positive energy and notes and letters and cards and food and EVERYTHING!
Here is the high-level summary. Details are below.
Got the tattoos and did the dry run for radiation, but due to low white cell count, my first week of radiation and chemotherapy was cancelled. We'll try again next week.
----------------------------------
Last week, I got the CT scan and tattoos to set up for radiation. I had to drink a drink before the CT scan, but it wasn't too bad. The IV is always terrorizing, so that was normal. Getting the tattoos felt like getting pinched by a needle, but it wasn't too bad overall.
This week was supposed to be my first week of the combined radiation/chemo therapy, for any of you keeping track.
My normal routine is supposed to look something like this:
Mondays: Go to the infusion room (ugh -- even just typing that made me nauseous). Get attached to the pump so that I can have continuous chemo five days a week while I am getting radiation. I get to wear this thing five days a week now. I thought two days a week was onerous!
Monday thru Friday: Go to the radiation room, get radiated. Leave. Radiation takes about five minutes, but you need to allow an hour because you just do.
Friday: After radiation, they remove the pump and draw blood to test my white, red cell counts, liver, etc.
This week, it looked like this:
Monday
I thought this would be Day 1. But, it was just a simulation, kind of like a dry run.
Under the category of "Angels appear in various ways", someone from my yoga class used to head that whole department at MGH. So she met me there and introduced me to everyone to help things go a bit more smoothly. It was fun to see her outside of yoga, and incredibly generous of her to get up early and spend the morning with me there. I don't normally see her outside of yoga, so it was one of those funky coincidences that one can only marvel at.
Tuesday:
So, I thought THIS would be Day 1. In some ways, it was. I arrived early, went to my normal infusion nurse and got hooked up to my chemo bag (the continuous infusion pump that I am supposed to wear five days a week through radiation), then made my way to radiation, which is in the basement of another part of the hospital.
Because these machines need to be stable, they are typically located in the basement of a building. For a claustrophobe like me, that can be crazy-making. But, the building designer kindly put stairs within sight of the waiting room, and at the top of the stairs is the door to the outside. That helps!
Got the radiation done. People were really nice, though for me, someone who doesn't even like to use a microwave, it was a funky thought to be purposefully irradiating my body. For my radiation, I lay face down on the table and they line up lasers with my tattoos. Then everyone scurries out of the room while the radiation happens.
Went home. Got a phone call -- My white cell counts were too low. Return to the hospital and disconnect the pump.
So, I got a little further on day 2! But, no chemo or radiation this week while we wait for the white cells to rebound.
It's nice to have a week off. Another week to get used to the idea of living with the pump. I get to take showers without worrying about getting it wet, and I get to sleep without worrying about tangling myself in the tubing. Woo hoo!
Of course, it puts off the treatment for another week, but let's not look at it that way...And after that little bit of radiation, I needed a nap, so I can see why people say that I will likely experience fatigue.
A couple of other things: The waiting room for radiation is WAY more chatty than for infusion. In the infusion waiting room, people don't really talk with one another. In the radiation waiting room, strangers compare cancer stories. And, it is sobering. You hear things like, "Hey, Dad, he has throat cancer, too!" and "What stage are you?" The only other time I've heard strangers open up so much to each other is on an airplane. And, like I do on an airplane, I sit and read my book. It's a bit much for me.
The kids are doing alright. My four-year-old is getting used to the idea that doctor appointments are non-negotiable, but is a bit tired of it all. (join the club, I guess) My one-year-old is, well,your typical 20 month old, and mostly, he just wants someone to throw a ball with and sometimes, at.
My husband is hanging in there. I figure that it is a good thing that his best friend and I are both at MGH. Unfortunately, between accompanying his friend and me, my husband is there often enough that one of the doctors asked if he professionally drives patients to their appointments. We also have another friend who is going there (for a completely different reason), and yesterday, my husband was there with me, then there with his friend, and then ran into our other friends. We need to expand our world and find better meeting places.
The song stuck in my head this week is No Rain by Blind Melon. Who knows why. Lyrics are below if you are interested. Maybe it is oversharing. I put the words in bold that stand out to me.
Well, I'm psyched to have a week off, away from the chemo pump. In fact, today, for the first time since I started treatment, I've been able to do more than one thing during the day. Yippee! I hope that you are having an awesome week, too!
Happy Spring!
Love, Marie
No Rain by Blind Melon
All I can say is that my life is pretty plain
I like watchin' the puddles gather rain
And all I can do is just pour some tea for two
and speak my point of view
But it's not sane, It's not sane
I just want some one to say to me
I'll always be there when you wake
Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made
And I don't understand why I sleep all day
And I start to complain that there's no rain
And all I can do is read a book to stay awake
And it rips my life away, but it's a great escape
escape......escape......escape......
All I can say is that my life is pretty plain
ya don't like my point of view
ya think I'm insane
Its not sane......it's not sane
Here is the high-level summary. Details are below.
Got the tattoos and did the dry run for radiation, but due to low white cell count, my first week of radiation and chemotherapy was cancelled. We'll try again next week.
----------------------------------
Last week, I got the CT scan and tattoos to set up for radiation. I had to drink a drink before the CT scan, but it wasn't too bad. The IV is always terrorizing, so that was normal. Getting the tattoos felt like getting pinched by a needle, but it wasn't too bad overall.
This week was supposed to be my first week of the combined radiation/chemo therapy, for any of you keeping track.
My normal routine is supposed to look something like this:
Mondays: Go to the infusion room (ugh -- even just typing that made me nauseous). Get attached to the pump so that I can have continuous chemo five days a week while I am getting radiation. I get to wear this thing five days a week now. I thought two days a week was onerous!
Monday thru Friday: Go to the radiation room, get radiated. Leave. Radiation takes about five minutes, but you need to allow an hour because you just do.
Friday: After radiation, they remove the pump and draw blood to test my white, red cell counts, liver, etc.
This week, it looked like this:
Monday
I thought this would be Day 1. But, it was just a simulation, kind of like a dry run.
Under the category of "Angels appear in various ways", someone from my yoga class used to head that whole department at MGH. So she met me there and introduced me to everyone to help things go a bit more smoothly. It was fun to see her outside of yoga, and incredibly generous of her to get up early and spend the morning with me there. I don't normally see her outside of yoga, so it was one of those funky coincidences that one can only marvel at.
Tuesday:
So, I thought THIS would be Day 1. In some ways, it was. I arrived early, went to my normal infusion nurse and got hooked up to my chemo bag (the continuous infusion pump that I am supposed to wear five days a week through radiation), then made my way to radiation, which is in the basement of another part of the hospital.
Because these machines need to be stable, they are typically located in the basement of a building. For a claustrophobe like me, that can be crazy-making. But, the building designer kindly put stairs within sight of the waiting room, and at the top of the stairs is the door to the outside. That helps!
Got the radiation done. People were really nice, though for me, someone who doesn't even like to use a microwave, it was a funky thought to be purposefully irradiating my body. For my radiation, I lay face down on the table and they line up lasers with my tattoos. Then everyone scurries out of the room while the radiation happens.
Went home. Got a phone call -- My white cell counts were too low. Return to the hospital and disconnect the pump.
So, I got a little further on day 2! But, no chemo or radiation this week while we wait for the white cells to rebound.
It's nice to have a week off. Another week to get used to the idea of living with the pump. I get to take showers without worrying about getting it wet, and I get to sleep without worrying about tangling myself in the tubing. Woo hoo!
Of course, it puts off the treatment for another week, but let's not look at it that way...And after that little bit of radiation, I needed a nap, so I can see why people say that I will likely experience fatigue.
A couple of other things: The waiting room for radiation is WAY more chatty than for infusion. In the infusion waiting room, people don't really talk with one another. In the radiation waiting room, strangers compare cancer stories. And, it is sobering. You hear things like, "Hey, Dad, he has throat cancer, too!" and "What stage are you?" The only other time I've heard strangers open up so much to each other is on an airplane. And, like I do on an airplane, I sit and read my book. It's a bit much for me.
The kids are doing alright. My four-year-old is getting used to the idea that doctor appointments are non-negotiable, but is a bit tired of it all. (join the club, I guess) My one-year-old is, well,your typical 20 month old, and mostly, he just wants someone to throw a ball with and sometimes, at.
My husband is hanging in there. I figure that it is a good thing that his best friend and I are both at MGH. Unfortunately, between accompanying his friend and me, my husband is there often enough that one of the doctors asked if he professionally drives patients to their appointments. We also have another friend who is going there (for a completely different reason), and yesterday, my husband was there with me, then there with his friend, and then ran into our other friends. We need to expand our world and find better meeting places.
The song stuck in my head this week is No Rain by Blind Melon. Who knows why. Lyrics are below if you are interested. Maybe it is oversharing. I put the words in bold that stand out to me.
Well, I'm psyched to have a week off, away from the chemo pump. In fact, today, for the first time since I started treatment, I've been able to do more than one thing during the day. Yippee! I hope that you are having an awesome week, too!
Happy Spring!
Love, Marie
No Rain by Blind Melon
All I can say is that my life is pretty plain
I like watchin' the puddles gather rain
And all I can do is just pour some tea for two
and speak my point of view
But it's not sane, It's not sane
I just want some one to say to me
I'll always be there when you wake
Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made
And I don't understand why I sleep all day
And I start to complain that there's no rain
And all I can do is read a book to stay awake
And it rips my life away, but it's a great escape
escape......escape......escape......
All I can say is that my life is pretty plain
ya don't like my point of view
ya think I'm insane
Its not sane......it's not sane
Tuesday, March 18, 2008
Preparing for Radiation
This is the machine they use to give radiation. The flat board in front of it changes shape (has all kinds of attachments) depending on the part of the body being radiated. For mine, I get a little space to put my head, like you do when you get a massage. That is what is pictured here. Then the board (with your body on it) slides under that big round disk. High on the walls are little black boxes. A laser shoots from these and should hit my tattoos; that helps them figure out whether I am in the right position, then they start the radiation.
Wednesday, February 20, 2008
Chemo Five of SIX: Blood counts coming up, beginning to think about radiation
I finally got the schedule for the rest of my chemo, and on Tuesday, had number five of six. So I am almost through the first part of this treatment!!!!
The past two weeks have been relatively non-eventful, though I did learn a few things.
The first that comes to mind: I got my regular injection to increase my white cell production. I usually have a particular nurse who does reiki before, during and after the injection, so it never felt like a big deal to get the shot.
This time, she was out, so I got the nearest available nurse. Wow. Not only did the injection hurt like heck, but I let out with a string of swear words that I don't think I've ever used all in a row, then burst into tears. So, thank goodness for reiki and, I am learning that while I am living with so much uncertainty, it helps me to have consistent caregivers.
Now that my doctor will be going on maternity leave, I will be assigned to another doctor. Learning that I need consistent caregivers, we opted to keep my current chemo day. This way, I would have the same nursing staff, scheduling person, etc. We'll figure out what doctor is available on that day. The other good news is that the resident who I adored at Dana Farber is now a Fellow at MGH, so I will have him on my team as well. Ya-Hoo! Someone is really watching out for me.
I seem to be tolerating the treatments well. My white cells were in a good place this time, and, thanks to the seaweed soup, the bone marrow soup, the somewhat consistent iron pills (I don't always take them -- oops), cream of wheat, lamb, cooking in cast iron, acupuncture and a little bit of magic...I now have what seems to be a relatively normal set of red cells. Whew. My nausea is mostly the kind of nausea that makes you feel like you should put a little something in your stomach, so I'm eating constantly and steadily gaining weight.
This chemo visit was a bit funky but kind of fun (in a weird way). My schedule got all balled up, so I was there all day. But I got to visit with other friends who were there as patients, and a few friends dropped by here and there, as well as my husband. I learned about a fabulous knitting book, and I almost finished knitting my scarf for my four-year-old son.
It did occur to me that all of us chemo patients spend alot of time just waiting. Isn't it ironic that, for people who I am sure have contemplated the precious commodity of time, we are forced to sit and do nothing with it! I've chosen to look at it as an investment -- this full day in the hospital buys more time on the other end. But still, ironic. And a bit annoying.
Next up is radiation. Here is what I know so far about that:
-- It kind of scares me (which means I need to learn more).
-- Because my cancer was right on the line between colon and rectal (lovely), it is my choice whether or not to have it. All advice points to having it, so I am going down that road.
-- It is five days a week for 5.5 weeks, and I will wear my continuous chemo pump during those five days, every week. I really resent having this pump, but I've got to find a way to make peace with that or I will make myself crazy. Someone at my acupuncturist office told me to think of it as a friend that is mildly annoying. I don't really have any of those, so I'll have to conjure something up. Any ideas are welcome.
I meet with the radiologist on Monday to learn more, so if you know of any questions I should ask him, send those along.
Finally, the kids seem to be doing okay with all this. I am away alot, and the more I am away, the more they seem to cling to me. Between the doctor appointments, acupuncture, nutritionist, yoga, phone calls to schedule appointments, and also needing some time alone and with friends (haven't figured out how to get exercise in there, too), I think I would see them more if I had a fulltime job.
It helps that folks have provided great playdates (thank you!) and we've found some wonderful babysitters along the way.
There was a time period where I was so raw that I was wide open. And during that time, it is almost as if grace had a chance to enter. The gifts and suggestions that I was open to during that time have all been wonderful additions to my life. Life has now kind of assumed a new normal, so I am no longer in that place, and while I wish I could generate that kind of openness in myself, I am always grateful for ever having it at all, and for all the gifts it brought.
Thank you for all the meals, playdates, suggestions, good wishes, prayers and friendship. This feels like such a long road, and I am so thankful for your company.
Love, Marie
The past two weeks have been relatively non-eventful, though I did learn a few things.
The first that comes to mind: I got my regular injection to increase my white cell production. I usually have a particular nurse who does reiki before, during and after the injection, so it never felt like a big deal to get the shot.
This time, she was out, so I got the nearest available nurse. Wow. Not only did the injection hurt like heck, but I let out with a string of swear words that I don't think I've ever used all in a row, then burst into tears. So, thank goodness for reiki and, I am learning that while I am living with so much uncertainty, it helps me to have consistent caregivers.
Now that my doctor will be going on maternity leave, I will be assigned to another doctor. Learning that I need consistent caregivers, we opted to keep my current chemo day. This way, I would have the same nursing staff, scheduling person, etc. We'll figure out what doctor is available on that day. The other good news is that the resident who I adored at Dana Farber is now a Fellow at MGH, so I will have him on my team as well. Ya-Hoo! Someone is really watching out for me.
I seem to be tolerating the treatments well. My white cells were in a good place this time, and, thanks to the seaweed soup, the bone marrow soup, the somewhat consistent iron pills (I don't always take them -- oops), cream of wheat, lamb, cooking in cast iron, acupuncture and a little bit of magic...I now have what seems to be a relatively normal set of red cells. Whew. My nausea is mostly the kind of nausea that makes you feel like you should put a little something in your stomach, so I'm eating constantly and steadily gaining weight.
This chemo visit was a bit funky but kind of fun (in a weird way). My schedule got all balled up, so I was there all day. But I got to visit with other friends who were there as patients, and a few friends dropped by here and there, as well as my husband. I learned about a fabulous knitting book, and I almost finished knitting my scarf for my four-year-old son.
It did occur to me that all of us chemo patients spend alot of time just waiting. Isn't it ironic that, for people who I am sure have contemplated the precious commodity of time, we are forced to sit and do nothing with it! I've chosen to look at it as an investment -- this full day in the hospital buys more time on the other end. But still, ironic. And a bit annoying.
Next up is radiation. Here is what I know so far about that:
-- It kind of scares me (which means I need to learn more).
-- Because my cancer was right on the line between colon and rectal (lovely), it is my choice whether or not to have it. All advice points to having it, so I am going down that road.
-- It is five days a week for 5.5 weeks, and I will wear my continuous chemo pump during those five days, every week. I really resent having this pump, but I've got to find a way to make peace with that or I will make myself crazy. Someone at my acupuncturist office told me to think of it as a friend that is mildly annoying. I don't really have any of those, so I'll have to conjure something up. Any ideas are welcome.
I meet with the radiologist on Monday to learn more, so if you know of any questions I should ask him, send those along.
Finally, the kids seem to be doing okay with all this. I am away alot, and the more I am away, the more they seem to cling to me. Between the doctor appointments, acupuncture, nutritionist, yoga, phone calls to schedule appointments, and also needing some time alone and with friends (haven't figured out how to get exercise in there, too), I think I would see them more if I had a fulltime job.
It helps that folks have provided great playdates (thank you!) and we've found some wonderful babysitters along the way.
There was a time period where I was so raw that I was wide open. And during that time, it is almost as if grace had a chance to enter. The gifts and suggestions that I was open to during that time have all been wonderful additions to my life. Life has now kind of assumed a new normal, so I am no longer in that place, and while I wish I could generate that kind of openness in myself, I am always grateful for ever having it at all, and for all the gifts it brought.
Thank you for all the meals, playdates, suggestions, good wishes, prayers and friendship. This feels like such a long road, and I am so thankful for your company.
Love, Marie
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