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
Tuesday, January 22, 2008
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
Wednesday, January 2, 2008
Chemo today -- NOT
Hello and Happy New Year!
Thank you for your good wishes for my New Year's chemo today. There were interminable waits at the hospital, but it was a really good day, and I got to visit with lots of friends.
But the chemo itself didn't happen. Felt a bit like a snow day -- fun, but I know that I have to make up for it before the end.
Turns out that my white blood cell count was too low, so I will get some shots to bring it up, and hopefully it will be high enough next week to get chemo. I can't believe I actually WANT to get chemo, but I do want it to do its thing so I can move on with life.
This also buys me a trip to the hematologist, to figure out why the count is already so low.
One of the things I find most -- hmmm --- interesting? -- about all this is -- you take one medication, which then has side effects, so you take another for the side effects. But, nothing is for free, right? So, THAT has side effects...so you take another medication... and so on. Strange for me; before this, food was truly my only form of medicine.
I like this explanation that the nurse gave me: They give the highest dose of chemo that they think you can tolerate. But it isn't one size fits all, so this is part of tailoring what the right dose is.
And, I feel really good, which makes day-to-day life more fun, of course.
Managing all this uncertainty with the kids is tricky but going okay. We are all learning as we go.
Thank you again for your support. It really makes a huge difference and means the world.
Next chemo is now scheduled for next Tuesday.
Whether you are near or far, your prayers and positive energy are making such a difference, and that is most appreciated moment-by-moment. Thank you!
Ciao for now,
Marie
Thank you for your good wishes for my New Year's chemo today. There were interminable waits at the hospital, but it was a really good day, and I got to visit with lots of friends.
But the chemo itself didn't happen. Felt a bit like a snow day -- fun, but I know that I have to make up for it before the end.
Turns out that my white blood cell count was too low, so I will get some shots to bring it up, and hopefully it will be high enough next week to get chemo. I can't believe I actually WANT to get chemo, but I do want it to do its thing so I can move on with life.
This also buys me a trip to the hematologist, to figure out why the count is already so low.
One of the things I find most -- hmmm --- interesting? -- about all this is -- you take one medication, which then has side effects, so you take another for the side effects. But, nothing is for free, right? So, THAT has side effects...so you take another medication... and so on. Strange for me; before this, food was truly my only form of medicine.
I like this explanation that the nurse gave me: They give the highest dose of chemo that they think you can tolerate. But it isn't one size fits all, so this is part of tailoring what the right dose is.
And, I feel really good, which makes day-to-day life more fun, of course.
Managing all this uncertainty with the kids is tricky but going okay. We are all learning as we go.
Thank you again for your support. It really makes a huge difference and means the world.
Next chemo is now scheduled for next Tuesday.
Whether you are near or far, your prayers and positive energy are making such a difference, and that is most appreciated moment-by-moment. Thank you!
Ciao for now,
Marie
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