I'm bumming out.
One of my lovely oncologists called today. Sigh. My first impulse is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.
CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google; I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for). My doctors feel anything below 3.4 is good.
My white counts have gone low again, too.
I hung up the phone and cried.
Then, life continues. The phone rang again. I thought it was the doctor with more news. But, it was a friend. We hadn't talked in awhile and she was on her way to pick up her kids, with a few minutes to spare. When she innocently asked how I was doing, I burst into tears again. But I have to admit, it felt so good to talk with her. I am grateful that she acted on her inspiration to call me at that moment. It was just what I needed.
Connecting with Susan gave me energy to take the boys and do some retail therapy at Winston's Flowers. A few containers, plants, and flowers later, I felt a bit vindicated. The boys had a great time playing in the water fountains and were soaked through. They wanted to ride home naked. Fine with me.
When I drove up to the dock to load my purchases into the car, the saleswoman marveled at my calm. If only she knew.
I'm getting re-tested next week and hoping this is all just a fire drill.
Showing posts with label white blood cells. Show all posts
Showing posts with label white blood cells. Show all posts
Tuesday, May 5, 2009
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, 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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