So, I finished the e-mail, got in my car, and the song that was playing, right at the start, was Live Like you were Dying by Tim McGraw.
At first I took it as a message -- like, uh oh, am I truly dying? Is this the beginning of that?
Then I remembered what we talked about last night, where at first, I was doing all the things and working toward being all the things that I really wanted to do and be, but then I returned to my "old life and old self" and that was bothering me. Thinking about this, I decided to interpret my hearing that song from a slightly different angle, to get a different message, that this can be viewed as a gift (sort of like what Kerry was talking about) and this song was a reminder to do that.
For anyone who doesn't know the song (it is a country song), the lyrics are below. The really funny part is that I identified with the lyrics in at the start of the song ("I was in my early forties") and now realized that perhaps, I only think that I am in my early 40s!
Off to acupuncture.
Love, Me
He said I was in my early forties
with a lot of life before me
when a moment came that stopped me on a dime
and I spent most of the next days
looking at the x-rays
Talking bout the options
and talking bout sweet time
I asked him when it sank in
that this might really be the real end
hows it hit you when you get that kinda news
man whatd you do
and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and I loved deeper and I spoke sweeter
and I gave forgiveness Id been denying
and he said someday I hope you get the chance
to live like you were dying.
He said I was finally the husband
that most the time I wasnt
and I became a friend a friend would like to have
and all the sudden going fishin
wasnt such an imposition
and I went three times that year I lost my dad
well I finally read the good book
and I took a good long hard look
at what Id do if I could do it all again
and then
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and I loved deeper and I spoke sweeter
and I gave forgiveness Id been denying
and he said someday I hope you get the chance
to live like you were dying.
Like tomorrow was a gift and you got eternity to think about
whatd you do with it what did you do with it
what did I do with it
what would I do with it?
Sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and then I loved deeper and I spoke sweeter
and I watched an eagle as it was flying
and he said someday I hope you get the chance
to live like you were dying.
To live like you were dying
To live like you were dying
To live like you were dying
To live like you were dying
Wednesday, February 27, 2008
Another colonoscopy
For the first time ever, I found blood in my stools. Yikes. I didn't even catch this before having cancer. And now, there it is, undeniably.
Reluctantly, I told the doctors, who ordered a colonoscopy. Of course.
I was originally told that they only needed to look in the lower colon, not a full colonoscopy. BUT, today, I was informed that it would indeed be a full colonscopy.
I freaked out.
I don't know what it is. The fact that everything is so out of my control? That people are poking and prodding at me all the time? That I just had enough? And the woman booking the appointment just couldn't understand my need to understand more about the procedure, what the doctor was like, etc. And I just felt like life sucked. I rarely feel like all of life sucks, so that in itself sucked. And down the vortex I went, into the ocean's drain with all those frigging plastic bottles and flotsom and jetsom that will just never go away.
They wanted to postpone my chemo to do the colonoscopy and all I could think of was that Tania and Eleanor and maybe Kerry would be coming with me to chemo this week and I didn't want to reschedule it, and also because the end was in sight. So she agreed to squeeze me into Friday's schedule so that I didn't have to change my chemo day.
After all that, just before the procedure, I burst into tears and was crying and dreading the IV and unconsciousness when I heard Stephanie's voice saying, "IVF nap" which cracked me up while I was crying and maybe made me look like a crazy lady but I felt better.
So thanks for meeting and the bright spots that carry into today. And thank you so so much for listening and being there.
Love, Marie
Reluctantly, I told the doctors, who ordered a colonoscopy. Of course.
I was originally told that they only needed to look in the lower colon, not a full colonoscopy. BUT, today, I was informed that it would indeed be a full colonscopy.
I freaked out.
I don't know what it is. The fact that everything is so out of my control? That people are poking and prodding at me all the time? That I just had enough? And the woman booking the appointment just couldn't understand my need to understand more about the procedure, what the doctor was like, etc. And I just felt like life sucked. I rarely feel like all of life sucks, so that in itself sucked. And down the vortex I went, into the ocean's drain with all those frigging plastic bottles and flotsom and jetsom that will just never go away.
They wanted to postpone my chemo to do the colonoscopy and all I could think of was that Tania and Eleanor and maybe Kerry would be coming with me to chemo this week and I didn't want to reschedule it, and also because the end was in sight. So she agreed to squeeze me into Friday's schedule so that I didn't have to change my chemo day.
After all that, just before the procedure, I burst into tears and was crying and dreading the IV and unconsciousness when I heard Stephanie's voice saying, "IVF nap" which cracked me up while I was crying and maybe made me look like a crazy lady but I felt better.
So thanks for meeting and the bright spots that carry into today. And thank you so so much for listening and being there.
Love, Marie
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
Tuesday, February 12, 2008
Livingston Taylor makes my day!
I am kind of star-struck so I have to share this with you guys!
Livingston Taylor was at my father-in-law's birthday party. I got to talk with him and tried not to act too star-struck. Then he sat down and played the piano and sang to my husband and me. No one else came over to listen, so it felt like a personal concert. I just loved that!
Livingston Taylor was at my father-in-law's birthday party. I got to talk with him and tried not to act too star-struck. Then he sat down and played the piano and sang to my husband and me. No one else came over to listen, so it felt like a personal concert. I just loved that!
Saturday, February 9, 2008
Mammogram results good, and removed the pump MYSELF!
Before Chemo
Once again, I'm headed to chemo filled with awe and gratitude for the support you show in so many ways. Thank you so sincerely. This can be such an isolating experience and you make it feel so much less so.
This week has been so good that my last chemo feels like ages ago. I'm loving that.
Well, it was a relatively uneventful week, other than the Pats losing, but hey, what a great streak and great team, and besides, being from Pittsburgh, I'm probably still a Steelers fan at heart.
Two significant events that I wanted to share.
First, my mammogram and exam showed no signs of cancer. Whew. I can't believe what a huge weight that is off my mind. Before that, I was going into planning mode for how I would manage two cancers at once. But, once I got rid of that worry, I found that I had alot more energy. I guess I was expending alot of energy just thinking about that. It was great to see my breast surgeon and catch up with her as well. She is truly an angel on earth.
Second, many of you know my little routine: chemo on Tuesday, get the continuous infusion pump, wear it until Thursday, then have it removed.
I've either gone to see my husband at work to have it removed, or gone to MGH to have it removed. But I am actually supposed to be able to do this at home myself. The idea of doing that kind of freaked me out, so, I decided to just drive to MGH and have them do it. I felt a bit lazy and a little bit like I wasn't stepping up to the challenge. If everyone else does it, I should be able to, too. But I stuck with my routine.
To make a long story short, on Thursday, my car wouldn't start and, once we jumped it, wouldn't stay running. By the time I waited for the tow truck, it was too late to call a cab so I HAD to remove the pump myself. No choice. Sometimes those messages from the Universe are more direct than others.
I laid everything out on the bathroom floor, all around me:
- Saline syringe to clear the line
- Heparin syringe to keep the blood from clotting
- Sharps container to dispose of the syringes
- Rubber gloves to protect my skin from any chemo that might leak out -- yikes
- Plastic bags to hold the tubing and infusion machine after I remove it
- the FedEx box to return the machine
I had my nurse on speakerphone giving me instructions and walking me through it, and the kids with a babysitter two floors away because I didn't want them to be anywhere near this.
I got through it with no spills and without throwing up. I was really proud of myself for doing it, and afterward, decided that I will continue to go to the hospital to have it done. It just gives me some emotional distance from all this.
Oh, and they never could find a problem with the car, and it seems to start fine now.
It was great to have a relatively uneventful week. I'll write a bit more after chemo. Whenever I go in for chemo, I feel like a lightweight fighter going into the ring against a heavyweight champ, with only my attitude to help. Kind of like, I know I am going to get pummeled, but I'll give it my best shot and see how it goes.
After Chemo
My blood counts were a mix of good and low. I don't mind so much -- it's asking alot of my body to rebuild itself from chemo over and over. They were good enough that I had chemo on Tuesday. It was relatively uneventful, and nice to have a few visitors while I was there. Coincidentally, one is a friend who is a fellow patient. It's more fun to meet at a good restaurant, but still nice to have friends around.
Wed and Thursday, I wore the pump. Not fun, but it is getting to be routine.
Neuropathy is back, but not horrible this week. (knock wood) Taste buds are definitely affected: Chocolate is tasting gross now.
On Friday, I got my shot to increase my white blood count. I don't know why that part is so traumatic for me, but it is. This time, I didn't have my regular nurse, which throws me off. She was out, and the one I got was a pretty impersonal kind of guy. After I left the office, I knew I couldn't drive so took a nap in the healing garden (this little indoor garden they have) then went home and slept for the rest of the day. I get bummed out that I am missing out on general day-to-day life when I need to sleep, but at least I have the luxury of being able to do that.
That's it for now. Thank you for listening!
Oh, I'll pass along something I heard this week: I hope that every day, you can laugh, cry (or otherwise emote!) and think.
Love, Marie
Once again, I'm headed to chemo filled with awe and gratitude for the support you show in so many ways. Thank you so sincerely. This can be such an isolating experience and you make it feel so much less so.
This week has been so good that my last chemo feels like ages ago. I'm loving that.
Well, it was a relatively uneventful week, other than the Pats losing, but hey, what a great streak and great team, and besides, being from Pittsburgh, I'm probably still a Steelers fan at heart.
Two significant events that I wanted to share.
First, my mammogram and exam showed no signs of cancer. Whew. I can't believe what a huge weight that is off my mind. Before that, I was going into planning mode for how I would manage two cancers at once. But, once I got rid of that worry, I found that I had alot more energy. I guess I was expending alot of energy just thinking about that. It was great to see my breast surgeon and catch up with her as well. She is truly an angel on earth.
Second, many of you know my little routine: chemo on Tuesday, get the continuous infusion pump, wear it until Thursday, then have it removed.
I've either gone to see my husband at work to have it removed, or gone to MGH to have it removed. But I am actually supposed to be able to do this at home myself. The idea of doing that kind of freaked me out, so, I decided to just drive to MGH and have them do it. I felt a bit lazy and a little bit like I wasn't stepping up to the challenge. If everyone else does it, I should be able to, too. But I stuck with my routine.
To make a long story short, on Thursday, my car wouldn't start and, once we jumped it, wouldn't stay running. By the time I waited for the tow truck, it was too late to call a cab so I HAD to remove the pump myself. No choice. Sometimes those messages from the Universe are more direct than others.
I laid everything out on the bathroom floor, all around me:
- Saline syringe to clear the line
- Heparin syringe to keep the blood from clotting
- Sharps container to dispose of the syringes
- Rubber gloves to protect my skin from any chemo that might leak out -- yikes
- Plastic bags to hold the tubing and infusion machine after I remove it
- the FedEx box to return the machine
I had my nurse on speakerphone giving me instructions and walking me through it, and the kids with a babysitter two floors away because I didn't want them to be anywhere near this.
I got through it with no spills and without throwing up. I was really proud of myself for doing it, and afterward, decided that I will continue to go to the hospital to have it done. It just gives me some emotional distance from all this.
Oh, and they never could find a problem with the car, and it seems to start fine now.
It was great to have a relatively uneventful week. I'll write a bit more after chemo. Whenever I go in for chemo, I feel like a lightweight fighter going into the ring against a heavyweight champ, with only my attitude to help. Kind of like, I know I am going to get pummeled, but I'll give it my best shot and see how it goes.
After Chemo
My blood counts were a mix of good and low. I don't mind so much -- it's asking alot of my body to rebuild itself from chemo over and over. They were good enough that I had chemo on Tuesday. It was relatively uneventful, and nice to have a few visitors while I was there. Coincidentally, one is a friend who is a fellow patient. It's more fun to meet at a good restaurant, but still nice to have friends around.
Wed and Thursday, I wore the pump. Not fun, but it is getting to be routine.
Neuropathy is back, but not horrible this week. (knock wood) Taste buds are definitely affected: Chocolate is tasting gross now.
On Friday, I got my shot to increase my white blood count. I don't know why that part is so traumatic for me, but it is. This time, I didn't have my regular nurse, which throws me off. She was out, and the one I got was a pretty impersonal kind of guy. After I left the office, I knew I couldn't drive so took a nap in the healing garden (this little indoor garden they have) then went home and slept for the rest of the day. I get bummed out that I am missing out on general day-to-day life when I need to sleep, but at least I have the luxury of being able to do that.
That's it for now. Thank you for listening!
Oh, I'll pass along something I heard this week: I hope that every day, you can laugh, cry (or otherwise emote!) and think.
Love, Marie
Tuesday, January 22, 2008
Chemo #3: Red and white counts are down
Thank you so much for your e-mails and your positive thoughts and prayers. I can't say how much they mean to me. I know that a number of you are climbing your own personal mountains right now, so I suspect you know what I mean when I say that your prayers carry me when I feel like I am dragging. Thank you so much. I'm sending all that right back at you, too. You are awesome for hanging in there with me.
Because I had a hard time writing after the last chemo, I'm writing the first part of this message prior to chemo, and will finish it when I return.
The Countdown:
A few people asked about the countdown, how many chemo sessions there are. It is a bit unclear. The schedule looks something like this:
Chemo: 4 - 6 sessions, one every other week. I'm not sure what determines whether it is 4 or 6 sessions, and no one seems to be able to tell me. They say that they will know when they are done. Okay.
Radiation: This part is pretty fixed. After the 4 -6 weeks of chemo, I get radiation M - F for 5.5 weeks. During those same 5.5 weeks, I will have have continuous infusion chemo (and wear the pump), M - F. I get weekends off!
Then I have a few vacation weeks. Woo hoo! Except, I am told that my body will need these to recuperate. Hmmm.
After that, chemo again, this time, 4 - 8 sessions, every other week. Again, don't know what determines the length, though they tell me that most people don't last that long. That scared me, but they reassured me that it wasn't because they were killed by the chemo, but that they were just tired of the whole thing and asked to be done if they could. Again, not something you really want to hear, but I'll cross that bridge later.
The whole thing takes about 8 months overall. So -- I'm on this program until the end of August or so. Are you thinking "ugh -- that is alot of emails!"???
Hematologist:
Last week, I saw the hematologist (aka The Vampire Doctor, according to my four-year-old). AMAZING guy. Smart, compassionate, caring, good listener (probably a survival skill). And attractive, which helps any situation.
Anyway, I was scheduled to see him because my white cells weren't rebounding as they should (and I'm now on injections for that, plus acupuncture). He was very interested in why I have had two cancers in three years. In my mind, I file that under "Stuff happens", and figure that I am just lucky that it was found. But it is nice that someone is looking at that.
He recommended about 10 million blood tests, which I got. He was so great that I agreed to anything he said. By the end, I even agreed that he could take bone marrow and bone, but that is another day.
Of course, the blood draw was not uneventful. I hate blood draws, and the first nurse started out by saying, "Wow, he wants alot of blood." Then, seeing I was nervous, said, "It's just a blood draw!" Okay, not the nurse for me. I basically staged a sit-in until my regular chemo nurse could come and draw my blood.
Some results came in, and I'll hear about the rest soon. So far, so good; the two major ones:
White blood cell count was high. Yay.
Red blood cells -- well, I'm anemic, but no surprise there. That is how we found the whole cancer thing to begin with. More pills to remedy this. And the acupuncturist recommends "bone soup."
I kind of prefer the Chinese doctors who can look at your tongue, take your pulse, and know everything there is to know. But, I still go the Western med route as well....
Hard parts:
Taking so many pills. As someone who didn't take an aspirin or Tylenol before all this started, I am having trouble adjusting to that.
Other hard part: Really believing that this treatment will work. I am low-risk for this kind of cancer in the first place, so why should this treatment work? My chemo nurse assures me that those are completely disconnected events: It doesn't matter if you were supposed to get this or not, the treatment is for what you actually have. So, since I don't really have much else to hang my hat on, I'll hang it on that. And that logic makes sense to the logical part of me.
Other than that:
It has been a great week. Energy level was awesome. Randy, you were right that I would be able to roughhouse with the kids and lift them again. I didn't get to do e-mail as much as I would have liked, but that is true in general.
You know how you get a song stuck in your head and it can drive you nuts? The lyrics weren't so bad, except that it made me crazy to not be able to figure out the song. See if you can do it:
The blues they sent to meet me won't defeat me
It won't be long till happiness steps up to greet me.
Not bad lyrics, but I couldn't name that tune. To try and get it out of my head, my four-year-old advised that I sing Twinkle Twinkle or hum something from the Nutcracker. Yes, he is really learning alot at his supercalifrangelistic school -- I wish I could even THINK of something from the Nutcracker! But, not bad lyrics to have swirling around.
Post Chemo:
I can feel the neuropathy starting so I'll type fast. Chemo went pretty well today, pretty smoothly, no real stress. Because of my blood counts being funky, the doctor recommends three months of chemo (rather than two) because they are afraid that the radiation will drop the counts too low to do chemo later. I'm kind of relieved to put the radiation off as long as possible.
On other cancer fronts: Next Monday, I have a mammogram. Wish me luck!
Much love to all of you and thank you for your support. I don't really know how to express my gratitude but I hope to find a way.
Marie
Because I had a hard time writing after the last chemo, I'm writing the first part of this message prior to chemo, and will finish it when I return.
The Countdown:
A few people asked about the countdown, how many chemo sessions there are. It is a bit unclear. The schedule looks something like this:
Chemo: 4 - 6 sessions, one every other week. I'm not sure what determines whether it is 4 or 6 sessions, and no one seems to be able to tell me. They say that they will know when they are done. Okay.
Radiation: This part is pretty fixed. After the 4 -6 weeks of chemo, I get radiation M - F for 5.5 weeks. During those same 5.5 weeks, I will have have continuous infusion chemo (and wear the pump), M - F. I get weekends off!
Then I have a few vacation weeks. Woo hoo! Except, I am told that my body will need these to recuperate. Hmmm.
After that, chemo again, this time, 4 - 8 sessions, every other week. Again, don't know what determines the length, though they tell me that most people don't last that long. That scared me, but they reassured me that it wasn't because they were killed by the chemo, but that they were just tired of the whole thing and asked to be done if they could. Again, not something you really want to hear, but I'll cross that bridge later.
The whole thing takes about 8 months overall. So -- I'm on this program until the end of August or so. Are you thinking "ugh -- that is alot of emails!"???
Hematologist:
Last week, I saw the hematologist (aka The Vampire Doctor, according to my four-year-old). AMAZING guy. Smart, compassionate, caring, good listener (probably a survival skill). And attractive, which helps any situation.
Anyway, I was scheduled to see him because my white cells weren't rebounding as they should (and I'm now on injections for that, plus acupuncture). He was very interested in why I have had two cancers in three years. In my mind, I file that under "Stuff happens", and figure that I am just lucky that it was found. But it is nice that someone is looking at that.
He recommended about 10 million blood tests, which I got. He was so great that I agreed to anything he said. By the end, I even agreed that he could take bone marrow and bone, but that is another day.
Of course, the blood draw was not uneventful. I hate blood draws, and the first nurse started out by saying, "Wow, he wants alot of blood." Then, seeing I was nervous, said, "It's just a blood draw!" Okay, not the nurse for me. I basically staged a sit-in until my regular chemo nurse could come and draw my blood.
Some results came in, and I'll hear about the rest soon. So far, so good; the two major ones:
White blood cell count was high. Yay.
Red blood cells -- well, I'm anemic, but no surprise there. That is how we found the whole cancer thing to begin with. More pills to remedy this. And the acupuncturist recommends "bone soup."
I kind of prefer the Chinese doctors who can look at your tongue, take your pulse, and know everything there is to know. But, I still go the Western med route as well....
Hard parts:
Taking so many pills. As someone who didn't take an aspirin or Tylenol before all this started, I am having trouble adjusting to that.
Other hard part: Really believing that this treatment will work. I am low-risk for this kind of cancer in the first place, so why should this treatment work? My chemo nurse assures me that those are completely disconnected events: It doesn't matter if you were supposed to get this or not, the treatment is for what you actually have. So, since I don't really have much else to hang my hat on, I'll hang it on that. And that logic makes sense to the logical part of me.
Other than that:
It has been a great week. Energy level was awesome. Randy, you were right that I would be able to roughhouse with the kids and lift them again. I didn't get to do e-mail as much as I would have liked, but that is true in general.
You know how you get a song stuck in your head and it can drive you nuts? The lyrics weren't so bad, except that it made me crazy to not be able to figure out the song. See if you can do it:
The blues they sent to meet me won't defeat me
It won't be long till happiness steps up to greet me.
Not bad lyrics, but I couldn't name that tune. To try and get it out of my head, my four-year-old advised that I sing Twinkle Twinkle or hum something from the Nutcracker. Yes, he is really learning alot at his supercalifrangelistic school -- I wish I could even THINK of something from the Nutcracker! But, not bad lyrics to have swirling around.
Post Chemo:
I can feel the neuropathy starting so I'll type fast. Chemo went pretty well today, pretty smoothly, no real stress. Because of my blood counts being funky, the doctor recommends three months of chemo (rather than two) because they are afraid that the radiation will drop the counts too low to do chemo later. I'm kind of relieved to put the radiation off as long as possible.
On other cancer fronts: Next Monday, I have a mammogram. Wish me luck!
Much love to all of you and thank you for your support. I don't really know how to express my gratitude but I hope to find a way.
Marie
Friday, January 11, 2008
Chemo #2: Feeling sorry for myself
This became MUCH longer than I anticipated -- the bottom line is -- had chemo, full dose, went pretty well but just a bit "weirder" than last time. The novelty of having chemo has definitely worn off.
-------------------------
I keep starting this message, but the neuropathy was getting me this week, making it hard to type or do alot of things. And the chemo is kind of making my thinking a bit fuzzy.
Which means....I did get chemo this week! I did three injections last week to increase my white count, and one acupuncture session, sending my white count sky high, and I was able to get chemo. Mixed blessing, of course! But, two chemo sessions down! Yes, I'm counting.
Once we found that my white blood cell count was high enough, the question on the table was: Do we reduce the dose, so that my white count doesn't drop so much, or do we go full-speed-ahead and give injections on a regular basis to make sure that my white count stays high? The doctor's recommendation was to do everything we can to continue with the full dose of chemo, so now, after I remove the continuous infusion pump, I get an injection to produce white cells. Again, give one drug, then take another to manage its side effects....
Your bone marrow produces white blood cells, specifically, the bone marrow in flat bones like your sternum or pelvis. The injections are like speed for bone marrow production, and my marrow felt like it was expanding inside my bones. It makes those bones a bit sore, feeling like I needed a really good massage, but then you know it is working. They recommend Tylenol to help with that feeling. (again, give one drug, then another for the side effects...)
The acupuncture treatment she used for generating white cells is called the Hepatitis treatment, which freaked me out until I understood what was going on. My acupuncturist is this great Japanese woman and I seriously thought something got mixed up in the translation!
So, after all that, I got hooked up with chemo. Julie, my favorite nurse in the world, was there, and some friends dropped by, which made it fun, we got to catch up, and the time passed pretty quickly.
It was pretty uneventful, though this time around, I kind of got pushed off my center and it took me awhile to return. Not really sick, just not myself, and hard to get back to where I felt like myself. So it was hard to write and things were just slightly out of
sorts.
THEN, the neuropathy set in (sort of tingly hands and feet, sensitivity to cold) and I thought, okay I can manage that.
I went to the acupuncturist and told her about it. Immediately after the session, I got some sort of major cramping in my hands and was unable to move them at all. Weird. It was kind of like having a foot cramp or Charley horse in your hands. In addition to being painful, I could look at them and think "move!" but nothing would happen. It lasted about 5 minutes. (The good news is that, later at night, I realized that the neuropathy had gone away.)
After acupuncture, I was on my way to the hospital to get the pump removed and just thinking, "I really can't do this. This is insane." and generally feeling sorry for myself. I cried all the way to the hospital. Once there, I stopped to get a burrito, still very self-absorbed. The woman behind the counter went to warm the burrito, returned, and the guy behind me ordered a burrito. I watched her take my burrito off the grill and I thought she was going to give it to me. But she gave it to him!!!! I was too self-absorbed to really say anything in time, though later, I asked her why she did that and she just shrugged. Then I went to pay for it, and they overcharged me (I did catch that one.) It was a good reminder that if I don't watch it, the downward spiral happens quickly and you have to just propel it in a new direction asap!
This is already way longer than I intended, but I'll leave you with a funny story. Last week, I was at the hospital four days in a row. I saw a sign for Orange Stickers for discounted parking, so I asked the parking woman what they were for. In a sort of annoyed voice, she said, "They are for chemo patients."
"I'm a chemo patient!" Yes, I'm not above taking the perks.
But apparently, my response was said a bit too brightly, because she said, "Chemo patients who are here four or more days a week."
"I am here four or more days a week." Okay, not all for chemo, but it is all chemo-related.
"Get a note from your nurse. Next."
So I guess I still look okay!
Oh, and the nurse, instead of giving me a note, told me that I could do the injections myself at home (HA!) and offered me her daughter as a babysitter (okay - that part was a good deal!)
Thanks for hanging in there with me, for checking in and for all the support. It carries me through this in so many ways.
Love, Marie
-------------------------
I keep starting this message, but the neuropathy was getting me this week, making it hard to type or do alot of things. And the chemo is kind of making my thinking a bit fuzzy.
Which means....I did get chemo this week! I did three injections last week to increase my white count, and one acupuncture session, sending my white count sky high, and I was able to get chemo. Mixed blessing, of course! But, two chemo sessions down! Yes, I'm counting.
Once we found that my white blood cell count was high enough, the question on the table was: Do we reduce the dose, so that my white count doesn't drop so much, or do we go full-speed-ahead and give injections on a regular basis to make sure that my white count stays high? The doctor's recommendation was to do everything we can to continue with the full dose of chemo, so now, after I remove the continuous infusion pump, I get an injection to produce white cells. Again, give one drug, then take another to manage its side effects....
Your bone marrow produces white blood cells, specifically, the bone marrow in flat bones like your sternum or pelvis. The injections are like speed for bone marrow production, and my marrow felt like it was expanding inside my bones. It makes those bones a bit sore, feeling like I needed a really good massage, but then you know it is working. They recommend Tylenol to help with that feeling. (again, give one drug, then another for the side effects...)
The acupuncture treatment she used for generating white cells is called the Hepatitis treatment, which freaked me out until I understood what was going on. My acupuncturist is this great Japanese woman and I seriously thought something got mixed up in the translation!
So, after all that, I got hooked up with chemo. Julie, my favorite nurse in the world, was there, and some friends dropped by, which made it fun, we got to catch up, and the time passed pretty quickly.
It was pretty uneventful, though this time around, I kind of got pushed off my center and it took me awhile to return. Not really sick, just not myself, and hard to get back to where I felt like myself. So it was hard to write and things were just slightly out of
sorts.
THEN, the neuropathy set in (sort of tingly hands and feet, sensitivity to cold) and I thought, okay I can manage that.
I went to the acupuncturist and told her about it. Immediately after the session, I got some sort of major cramping in my hands and was unable to move them at all. Weird. It was kind of like having a foot cramp or Charley horse in your hands. In addition to being painful, I could look at them and think "move!" but nothing would happen. It lasted about 5 minutes. (The good news is that, later at night, I realized that the neuropathy had gone away.)
After acupuncture, I was on my way to the hospital to get the pump removed and just thinking, "I really can't do this. This is insane." and generally feeling sorry for myself. I cried all the way to the hospital. Once there, I stopped to get a burrito, still very self-absorbed. The woman behind the counter went to warm the burrito, returned, and the guy behind me ordered a burrito. I watched her take my burrito off the grill and I thought she was going to give it to me. But she gave it to him!!!! I was too self-absorbed to really say anything in time, though later, I asked her why she did that and she just shrugged. Then I went to pay for it, and they overcharged me (I did catch that one.) It was a good reminder that if I don't watch it, the downward spiral happens quickly and you have to just propel it in a new direction asap!
This is already way longer than I intended, but I'll leave you with a funny story. Last week, I was at the hospital four days in a row. I saw a sign for Orange Stickers for discounted parking, so I asked the parking woman what they were for. In a sort of annoyed voice, she said, "They are for chemo patients."
"I'm a chemo patient!" Yes, I'm not above taking the perks.
But apparently, my response was said a bit too brightly, because she said, "Chemo patients who are here four or more days a week."
"I am here four or more days a week." Okay, not all for chemo, but it is all chemo-related.
"Get a note from your nurse. Next."
So I guess I still look okay!
Oh, and the nurse, instead of giving me a note, told me that I could do the injections myself at home (HA!) and offered me her daughter as a babysitter (okay - that part was a good deal!)
Thanks for hanging in there with me, for checking in and for all the support. It carries me through this in so many ways.
Love, Marie
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