Happy Halloween!
Last year was our first Halloween in this house. We got 60 trick-or-treaters. It was an awesome night. The minivans would pull up, the doors would be flung open, and a bunch of kids would come tumbling out onto our lawn in their costumes. They bravely did the entire three-house cul-de-sac on foot and then climbed back into the minivans to zoom off into the night. Tonight we got 51 kids, and it was just as awesome as last year.
I wanted to hand out candy to the trick-or-treaters without a hat or a wig or a scarf -- just BALD. I had hoped that it wouldn't be too scary for the little ones. After all, lots of grownups wear costumes to hand out candy. (Lou wore his usual getup: black cowboy hat and Star Wars light saber.)
But a little tiny guy dressed like a pirate took one look at me and ran screaming from the porch, all the way across the lawn, back to Mommy. He did not want to take the candy from the scary bald lady.
So I put on a hat.
I got Super Chemo nine days ago, and I still feel lousy. This was my 6th cycle. They warned me that with every cycle, the side effects would be worse. I know it's not that bad compared to some of the stories I've heard, but I still have the exhaustion, aches, pains, dizziness, hot flashes, shaking hands, twitching eyes, numb feet, dry mouth, ringing ears, and I keep running out of steam and falling asleep. By today, I expected to be feeling a lot better. I hate complaining like this. But I was thinking, you cannot "cheer me on" if I do not tell you that I need it.
On Monday, Lou and I will meet with the doctor to hear the results of the scan and decide what to do next. I am not worried about the results of the scan; I expect more shrinkage. But I have to tell you, the idea that the doctor might suggest two more cycles of chemo just fills me with dread. Lou is great -- every time I say something about whether I can handle two more cycles of chemo, he tells me to just wait for Monday.
Saturday, October 31, 2009
Friday, October 30, 2009
Another Big Scan Day Today
Today's Big Scan Day sort of snuck up on us! I did not give you a countdown or much of a warning. To be honest, that last fabulous MRI was so awesome that it wiped away my natural anxiety for this scan.
However, I did just finish three back-to-back rosary novenas, so I was doing my part in the prayer department :^) (For a novena, you say the rosary every day for nine days in a row for a specific favor; three novenas takes 27 days.) First novena, I asked for good results on the upcoming scan. Second novena, I copied Jesus by asking, "Father, if you are willing, please take this cup away from me. Otherwise your will be done not mine." And the third novena, I asked for help making the right decision on Monday -- to choose the best next step in my journey.
Lou is coming with me today. I tried to talk him out of it because I am just going for a scan and won't see the doctor. But Lou won't budge. I think he considers it his duty which is so sweet. I have been pretty pathetic all week, and I think he doesn't trust me to drive to Duke safely without him there to poke me awake if I pass out or get dizzy. (I have not been dizzy since Tuesday morning. I will not be passing out. Nothing to worry about.)
We'll hear the results from this scan on Monday.
Yesterday, I read through the Clincial Trial paperwork -- twice.
However, I did just finish three back-to-back rosary novenas, so I was doing my part in the prayer department :^) (For a novena, you say the rosary every day for nine days in a row for a specific favor; three novenas takes 27 days.) First novena, I asked for good results on the upcoming scan. Second novena, I copied Jesus by asking, "Father, if you are willing, please take this cup away from me. Otherwise your will be done not mine." And the third novena, I asked for help making the right decision on Monday -- to choose the best next step in my journey.
Lou is coming with me today. I tried to talk him out of it because I am just going for a scan and won't see the doctor. But Lou won't budge. I think he considers it his duty which is so sweet. I have been pretty pathetic all week, and I think he doesn't trust me to drive to Duke safely without him there to poke me awake if I pass out or get dizzy. (I have not been dizzy since Tuesday morning. I will not be passing out. Nothing to worry about.)
We'll hear the results from this scan on Monday.
Yesterday, I read through the Clincial Trial paperwork -- twice.
Wednesday, October 28, 2009
Do You Want My Posts Via Email?
I finally found instructions on my blogspot.com host to explain how I can configure the blog to send you email whenever I publish a new post!
If you are interested, let me know by sending me email at online@rossranch.com.
But, you won't see quick updates or comments via email.
I have not decided yet whether to email the entire post or just the first 255 characters. The question is, should this email serve as a notification that I have posted something new?
Either way, the email would end with a link to the actual blog.
If you are interested, let me know by sending me email at online@rossranch.com.
But, you won't see quick updates or comments via email.
I have not decided yet whether to email the entire post or just the first 255 characters. The question is, should this email serve as a notification that I have posted something new?
Either way, the email would end with a link to the actual blog.
Tuesday, October 27, 2009
Tired of Napping
Yesterday morning I felt just fantastic and drove in to the office. But after a couple of hours, I crashed and felt very tired and had to head home.
When I got home, I crawled into bed to sleep because that was all I was good for. But as I lay there, I so much did not want to take a nap. I am so tired of napping!
When I got home, I crawled into bed to sleep because that was all I was good for. But as I lay there, I so much did not want to take a nap. I am so tired of napping!
Sunday, October 25, 2009
Who is Your Nurse?
The treatment room was super busy on Super Chemo Day, and I finally got called at 3:00PM (my appointment was for 12:30).
My nurse asked if I wanted to have a bed instead of a recliner. I knew that I would be getting chemo for like three hours and figured a comfy adjustable hospital bed would be delightful -- an opportunity to go out in style since I am hoping that this is my last chemo treatment for awhile.
So I get the bed, I get hooked up, everything is going fine... and then the machine starts beeping because it is time to change the bag of drugs. Some random nurse comes over and asks (like they always do) "Who is your nurse?" and for the life of me I have no idea. Usually I read the name off the badge. Usually when I first get into the treatment room the nurse makes a big production about saying, "Hi Karen, I'm insert-name-here and I'll be your nurse today."
But all I could come up with was the fact that this nurse was married on March 24, 1968 which seems like very strange info for me to have, eh? But when she verified my birthdate (March 27, 1965), she immediately volunteered her wedding date because they are sort of close. (Not really though.)
So I say this to the random nurse: "I have no idea who my nurse is, but I know she was married on March 24, 1968," and the random nurse starts laughing hysterically because she knows exactly who I mean. Turns out, Nurse Penny manages to work her wedding date into a lot of conversations. Such as, you ask how old her daughter is, and she starts by counting from her own wedding date.
My red blood cell count was 9.5.
Super Chemo went really well.
My next appointment is Friday, October 30, for another big CT Scan With Contrast. This is the scan to see how well the entire six cycles of chemo did at shrinking the tumors. I am very hopeful and enthusiastic because the results so far have been just fantastic. Then on Monday, November 2, we will decide what to do next: monitoring, clinical trial, or more chemo. Lou will be coming to that appointment to help make the decision.
To prepare for the decision, Dr Reidel gave me a lot of info about the clinical trial, but I will have to type that in some other time. I am overdue for a nap now.
My nurse asked if I wanted to have a bed instead of a recliner. I knew that I would be getting chemo for like three hours and figured a comfy adjustable hospital bed would be delightful -- an opportunity to go out in style since I am hoping that this is my last chemo treatment for awhile.
So I get the bed, I get hooked up, everything is going fine... and then the machine starts beeping because it is time to change the bag of drugs. Some random nurse comes over and asks (like they always do) "Who is your nurse?" and for the life of me I have no idea. Usually I read the name off the badge. Usually when I first get into the treatment room the nurse makes a big production about saying, "Hi Karen, I'm insert-name-here and I'll be your nurse today."
But all I could come up with was the fact that this nurse was married on March 24, 1968 which seems like very strange info for me to have, eh? But when she verified my birthdate (March 27, 1965), she immediately volunteered her wedding date because they are sort of close. (Not really though.)
So I say this to the random nurse: "I have no idea who my nurse is, but I know she was married on March 24, 1968," and the random nurse starts laughing hysterically because she knows exactly who I mean. Turns out, Nurse Penny manages to work her wedding date into a lot of conversations. Such as, you ask how old her daughter is, and she starts by counting from her own wedding date.
My red blood cell count was 9.5.
Super Chemo went really well.
My next appointment is Friday, October 30, for another big CT Scan With Contrast. This is the scan to see how well the entire six cycles of chemo did at shrinking the tumors. I am very hopeful and enthusiastic because the results so far have been just fantastic. Then on Monday, November 2, we will decide what to do next: monitoring, clinical trial, or more chemo. Lou will be coming to that appointment to help make the decision.
To prepare for the decision, Dr Reidel gave me a lot of info about the clinical trial, but I will have to type that in some other time. I am overdue for a nap now.
Thursday, October 22, 2009
Super Chemo Day #6
Today we go kill some cancer cells! It is Super Chemo Day, when I get both Gem and Tax. We're using both of the big guns today.
The wierd part for me is that this is #6, so it is probably my last Super Chemo Day. Now that is pretty darned exciting, to have the chemo coming to an end.
But I am living in some uncertainly because there is the possibility that we will decide to add on two more cycles. That happens only RARELY and only if the next scan (Oct 30 with results on Nov 2) shows even more dramatic and significant shrinkage. In that case, there might be some value in two more cycles to see if even more shrinkage can be achieved. Of course, I have to be able to deal with the side effects. And the doctor has said that he is leaning more toward immediately going into the clinical trial instead. So... I am praying a rosary novena asking for help making the right decision and I asked my super-web-skilled brilliant friend Allison in Seattle to surf the web looking for anything she can find on 8 cycles of Gem/Tax versus the standard 6 cycles; we'll see if she can find anything.
What else can I tell ya?
I'll have to keep a mouth full of ice for the hour that the Tax is administered to try to minimize the dry mouth. It is sort of difficult but well worth the effort because it has helped. I hate that dry mouth!
Soon I will be interested in researching the whole bulging disc thing to see what I should be doing. Thanks to everyone who has given me info on what they do.
Ah, fantastic fun planned for the weekend: Cindy flies in from Florida to spend the weekend with us! We are so psyched. Apparently we are ALL required to watch the Miami Hurricanes college football game on Saturday night. Woo Hoo.
The wierd part for me is that this is #6, so it is probably my last Super Chemo Day. Now that is pretty darned exciting, to have the chemo coming to an end.
But I am living in some uncertainly because there is the possibility that we will decide to add on two more cycles. That happens only RARELY and only if the next scan (Oct 30 with results on Nov 2) shows even more dramatic and significant shrinkage. In that case, there might be some value in two more cycles to see if even more shrinkage can be achieved. Of course, I have to be able to deal with the side effects. And the doctor has said that he is leaning more toward immediately going into the clinical trial instead. So... I am praying a rosary novena asking for help making the right decision and I asked my super-web-skilled brilliant friend Allison in Seattle to surf the web looking for anything she can find on 8 cycles of Gem/Tax versus the standard 6 cycles; we'll see if she can find anything.
What else can I tell ya?
I'll have to keep a mouth full of ice for the hour that the Tax is administered to try to minimize the dry mouth. It is sort of difficult but well worth the effort because it has helped. I hate that dry mouth!
Soon I will be interested in researching the whole bulging disc thing to see what I should be doing. Thanks to everyone who has given me info on what they do.
Ah, fantastic fun planned for the weekend: Cindy flies in from Florida to spend the weekend with us! We are so psyched. Apparently we are ALL required to watch the Miami Hurricanes college football game on Saturday night. Woo Hoo.
Monday, October 19, 2009
Excellent MRI Results!
I just cannot even believe how great the news is!
Dr Reidel just phoned me with the results of Friday's MRI. The tumor in the psoas muscle SHRANK SIGNIFICANTLY! The report says that it started at 4.7 by 4.8, and is now 2.5 by 1.9. Maybe some of my mathmetician pals can tell me what percentage shrinkage that is.
Remember, at the last scan, this is the one tumor that did not shrink at all. But we were cool with that because it had been already beaten up pretty badly with the CyberKnife radiation, and sometimes tumors like that just sit there and never shrink but never grow either.
So why am I in pain?!
I have a bulging disc. A plain old ordinary non-life-threatening bulging disc! It is pushing on a nerve root.
The standard approach would be to use ibuprofen for at least a month to try to get the disc un-bulged, and if that does not work to try a steroid injection to shrink the disc.
The tricky thing is that ibuprofen could cause kidney trouble during chemo, so I cannot take the max. The max is 2400 mg per day. I am going to take 1200 mg per day, see if that helps.
Well, I can tell you, just knowing that it is a "disc problem" and not a "cancer problem" has already helped!
I am sitting here laughing and crying all at once. This is such awesome news. I am so grateful. I have been praying pretty hard for help, and I know a lot of you are praying too, and it is working. I am going to have to calm down a little bit before I jump in the car and head to work.
Dr Reidel just phoned me with the results of Friday's MRI. The tumor in the psoas muscle SHRANK SIGNIFICANTLY! The report says that it started at 4.7 by 4.8, and is now 2.5 by 1.9. Maybe some of my mathmetician pals can tell me what percentage shrinkage that is.
Remember, at the last scan, this is the one tumor that did not shrink at all. But we were cool with that because it had been already beaten up pretty badly with the CyberKnife radiation, and sometimes tumors like that just sit there and never shrink but never grow either.
So why am I in pain?!
I have a bulging disc. A plain old ordinary non-life-threatening bulging disc! It is pushing on a nerve root.
The standard approach would be to use ibuprofen for at least a month to try to get the disc un-bulged, and if that does not work to try a steroid injection to shrink the disc.
The tricky thing is that ibuprofen could cause kidney trouble during chemo, so I cannot take the max. The max is 2400 mg per day. I am going to take 1200 mg per day, see if that helps.
Well, I can tell you, just knowing that it is a "disc problem" and not a "cancer problem" has already helped!
I am sitting here laughing and crying all at once. This is such awesome news. I am so grateful. I have been praying pretty hard for help, and I know a lot of you are praying too, and it is working. I am going to have to calm down a little bit before I jump in the car and head to work.
Expecting MRI Results Today
I expect to hear my MRI results today. On Friday, the nurse said that the preliminary results for an MRI are available within 24 hours, and the final report is available within 48 hours. I am really looking forward to getting the scoop. At this point, I am not even nervous; I just want to know what's going on in there.
I had another night of waking up in pain in the wrong position. Maybe I need to pile up all available pillows to build a fort around me so I can't roll over. Probably wouldn't work. Probably I'd end up tossing the pillows over at Lou in my sleep. Oh he would just love that ;^)
I had a great weekend for ironing. I brought down some winter clothes and packed away some summer clothes. (It will be 63 degrees today, but it will be 77 degrees this Wednesday through Friday). I'll see those summer clothes again soon enough when we start packing for the cruise!
Speaking of weather, did you know the term "cumulus cloud" was coined in 1804? Just another tidbit from The Age of Wonder, from the chapter about how some Englishmen used fabulous new hot air balloons and hydrogen balloons to gather data about nature. It is funny how long it is taking me to read that book! Does not help that I keep reading fiction. About a week ago, I finished re-reading all the Harry Potter books. That was a lot of fun; that went very quickly.
I had another night of waking up in pain in the wrong position. Maybe I need to pile up all available pillows to build a fort around me so I can't roll over. Probably wouldn't work. Probably I'd end up tossing the pillows over at Lou in my sleep. Oh he would just love that ;^)
I had a great weekend for ironing. I brought down some winter clothes and packed away some summer clothes. (It will be 63 degrees today, but it will be 77 degrees this Wednesday through Friday). I'll see those summer clothes again soon enough when we start packing for the cruise!
Speaking of weather, did you know the term "cumulus cloud" was coined in 1804? Just another tidbit from The Age of Wonder, from the chapter about how some Englishmen used fabulous new hot air balloons and hydrogen balloons to gather data about nature. It is funny how long it is taking me to read that book! Does not help that I keep reading fiction. About a week ago, I finished re-reading all the Harry Potter books. That was a lot of fun; that went very quickly.
Thursday, October 15, 2009
MRI Friday
I am having an MRI on Friday to see what is going on with the tumor in the psoas muscle. Specifically, we are going to "rule out spinal cord compression."
I have been in low level pain for a week. At night, I can't lie on my back, on my stomach, or on my left side. Luckily, Advil and Tylenol have taken care of the pain for the most part, although I do wake up around 3:00AM every night in pain because at some point I rolled over into a painful position.
If I stand up straight, my pain level jumps from a dull aching 1 to a serious 4. So if you see me and notice that I am walking sort of slumped over to the left, that is why. Slumpy is comfy! [Oh, that is awful.]
The really great part is that when I am sitting in my ergonomic office chair at work, I am comfortable and nothing hurts. I forget about being sick, and I completely focus on work. As I have said before, sometimes I forget to go home! ;^) Thank God I do not have a job where I have to stand up straight.
Dr Reidel suggested that the pain might be radiation recall, which is when you have radiation followed by chemo -- and during the chemo, the radiation side effects (redness, pain) come back.
Easy Chemo was very easy today. We definitely killed some cancer cells today. I got another Aranesp injection (hemoglobin at 9.4). The best part was when my nurse teased the pregnant nurse who dropped my Neulasta shot, asking if she wanted to give me this shot too. I love the idea that I helped add a story to the Treatment Room folklore.
I have been in low level pain for a week. At night, I can't lie on my back, on my stomach, or on my left side. Luckily, Advil and Tylenol have taken care of the pain for the most part, although I do wake up around 3:00AM every night in pain because at some point I rolled over into a painful position.
If I stand up straight, my pain level jumps from a dull aching 1 to a serious 4. So if you see me and notice that I am walking sort of slumped over to the left, that is why. Slumpy is comfy! [Oh, that is awful.]
The really great part is that when I am sitting in my ergonomic office chair at work, I am comfortable and nothing hurts. I forget about being sick, and I completely focus on work. As I have said before, sometimes I forget to go home! ;^) Thank God I do not have a job where I have to stand up straight.
Dr Reidel suggested that the pain might be radiation recall, which is when you have radiation followed by chemo -- and during the chemo, the radiation side effects (redness, pain) come back.
Easy Chemo was very easy today. We definitely killed some cancer cells today. I got another Aranesp injection (hemoglobin at 9.4). The best part was when my nurse teased the pregnant nurse who dropped my Neulasta shot, asking if she wanted to give me this shot too. I love the idea that I helped add a story to the Treatment Room folklore.
Wednesday, October 14, 2009
I Miss My Eyelashes
You never know how good you have it till it's gone. In this case, I'm talking about eyelashes.
Who knew eyelashes were so darned important?
Now that mine are almost all gone, my eyes are constantly irritated with dust and whatever other, um, irritants I don't even want to think about. So my eyes water a lot, which washes away any eyemakeup I put on.
Luckily I wear glasses, and you can't really see my eyes. Hmmm, you'd think my glasses would provide some dust protection. I must live and work in a particularly dusty environment.
My local news will be doing a report tonight on that new prescription drug that helps you grow nice thick eyelashes. The reporter said in a really ominous tone that there are side effects. I want to see this report. Maybe on Thursday I'll ask for a prescription. What's a few more side effects? I probably wouldn't even notice them.
Who knew eyelashes were so darned important?
Now that mine are almost all gone, my eyes are constantly irritated with dust and whatever other, um, irritants I don't even want to think about. So my eyes water a lot, which washes away any eyemakeup I put on.
Luckily I wear glasses, and you can't really see my eyes. Hmmm, you'd think my glasses would provide some dust protection. I must live and work in a particularly dusty environment.
My local news will be doing a report tonight on that new prescription drug that helps you grow nice thick eyelashes. The reporter said in a really ominous tone that there are side effects. I want to see this report. Maybe on Thursday I'll ask for a prescription. What's a few more side effects? I probably wouldn't even notice them.
Tuesday, October 13, 2009
Totally Hip
On the way to work yesterday, I called Chemo Nurse Marni and she actually answered her phone, so I didn't have to leave a message. That was excellent.
I reported my hip pain. I didn't take any Advil yesterday morning so that I would be able to characterize the pain for her. When I told her that, she immediately piped up with, "Let me ask you some questions about your pain," and we both started laughing like maniacs.
Anyway, the questions were great because I got to say NO to them, and they are the questions that would indicate that the nerves are involved with the tumor in the psoas. Like, "Do you have shooting pain down your leg?"
So now I am convinced that the pain is just the tumor sitting there whimpering and smoking and dying from all the chemo and radiation. That's nice.
I'm supposed to call back if it gets worse; otherwise just take notes about the pain and report to the doctor when I see him on Thursday.
This Thursday is Easy Chemo 6. We originally planned six cycles, so this might be the last one.
I reported my hip pain. I didn't take any Advil yesterday morning so that I would be able to characterize the pain for her. When I told her that, she immediately piped up with, "Let me ask you some questions about your pain," and we both started laughing like maniacs.
Anyway, the questions were great because I got to say NO to them, and they are the questions that would indicate that the nerves are involved with the tumor in the psoas. Like, "Do you have shooting pain down your leg?"
So now I am convinced that the pain is just the tumor sitting there whimpering and smoking and dying from all the chemo and radiation. That's nice.
I'm supposed to call back if it gets worse; otherwise just take notes about the pain and report to the doctor when I see him on Thursday.
This Thursday is Easy Chemo 6. We originally planned six cycles, so this might be the last one.
Tuesday, October 6, 2009
Waited Three Hours
I called the triage nurse yesterday just after 11:00AM to report that I was very dizzy and needed to hear back from them because this was a completely new and unpleasant symptom.
I had surfed the web a little and saw that dizziness is on the list of things you are definitely supposed to call your oncologist about. It can be caused by anemia, which of course I was just talking about yesterday.
Well, three hours later, I still had not gotten a call back from the triage nurse.
Lou said I ought to call Dr Reidel directly. It was surprisingly hard to do that; I had to psych myself up. I didn't want to bother him. That seems kind of funny now. Maybe it just goes to show how impaired my judgement was.
Anyway, Dr Reidel had given me the phone number to reach him directly, so I used it. When I explained the dizziness, he suggested that I might be dehydrated and told me what to do to fix it. He suggested that if I was not better in 24 hours to call back. He agreed that it might be my red blood cell count, but that we should rule out the dehydration first. That was good.
I immediately drank some grape Pedialyte (baby gatorade type drink). I found an unopened bottle in the fridge, leftover some "stomach upset" from weeks and weeks ago. Dear God that was so gross and sweet! (I bet babies love it though.)
I have not had any dizziness today, which is awesome. I am going to keep aggressively re-hydrating today.
Today I am not feeling that great. It's the flu-like symptoms from the Neulasta shot, I think. Some bones hurt and I am so weak. I was trying to fold sheets and I had to put them down because they were too heavy. (Yes, I was doing laundry. Yes, I iron my sheets. Yes, I am insane.)
I had surfed the web a little and saw that dizziness is on the list of things you are definitely supposed to call your oncologist about. It can be caused by anemia, which of course I was just talking about yesterday.
Well, three hours later, I still had not gotten a call back from the triage nurse.
Lou said I ought to call Dr Reidel directly. It was surprisingly hard to do that; I had to psych myself up. I didn't want to bother him. That seems kind of funny now. Maybe it just goes to show how impaired my judgement was.
Anyway, Dr Reidel had given me the phone number to reach him directly, so I used it. When I explained the dizziness, he suggested that I might be dehydrated and told me what to do to fix it. He suggested that if I was not better in 24 hours to call back. He agreed that it might be my red blood cell count, but that we should rule out the dehydration first. That was good.
I immediately drank some grape Pedialyte (baby gatorade type drink). I found an unopened bottle in the fridge, leftover some "stomach upset" from weeks and weeks ago. Dear God that was so gross and sweet! (I bet babies love it though.)
I have not had any dizziness today, which is awesome. I am going to keep aggressively re-hydrating today.
Today I am not feeling that great. It's the flu-like symptoms from the Neulasta shot, I think. Some bones hurt and I am so weak. I was trying to fold sheets and I had to put them down because they were too heavy. (Yes, I was doing laundry. Yes, I iron my sheets. Yes, I am insane.)
Monday, October 5, 2009
Red Blood Cell Count Still Low
Remember two weeks ago, my red blood cell count was 9.8 (should be 12 to 15) and so they gave me an Aranesp injection to bring it up?
And they also suggested that I eat things like spinach and beans and liver? Yum! Which I did.
Last Thursday, when I got Super Chemo, I asked what my red blood cell count was. My nurse gave me the printout from my labwork. Sort of expected it to be up -- but the red blood cell count did not go up. The red blood cell count was 9.7.
Maybe it would have gone further DOWN had I not had the injection.
I have not really noticed any symptoms except on Friday I cut my finger, and it took a few minutes of applying pressure and elevating my hand above my head to get it to stop bleeding.
Turns out, I can get this Aranesp injection every three weeks if I need it. But I can have beans and spinach and liver (yum) more often than that.
I better surf the web and find out what else is good to eat for iron. I don't want to wear out these favorites. That is what I do: find a new favorite and eat it too often till I get to the point where I never want to see or smell it again. Broccoli. Salmon with mashed potatoes and brussels sprouts. Cream of Wheat, oh it was YEARS before I could eat Cream of Wheat again!
Oooh, we booked the cruise and started looking at shore excursions! That was fun!
And they also suggested that I eat things like spinach and beans and liver? Yum! Which I did.
Last Thursday, when I got Super Chemo, I asked what my red blood cell count was. My nurse gave me the printout from my labwork. Sort of expected it to be up -- but the red blood cell count did not go up. The red blood cell count was 9.7.
Maybe it would have gone further DOWN had I not had the injection.
I have not really noticed any symptoms except on Friday I cut my finger, and it took a few minutes of applying pressure and elevating my hand above my head to get it to stop bleeding.
Turns out, I can get this Aranesp injection every three weeks if I need it. But I can have beans and spinach and liver (yum) more often than that.
I better surf the web and find out what else is good to eat for iron. I don't want to wear out these favorites. That is what I do: find a new favorite and eat it too often till I get to the point where I never want to see or smell it again. Broccoli. Salmon with mashed potatoes and brussels sprouts. Cream of Wheat, oh it was YEARS before I could eat Cream of Wheat again!
Oooh, we booked the cruise and started looking at shore excursions! That was fun!
Thursday, October 1, 2009
Christmas Vacation Approved!
Yahoo, here is what I found out today.
My next Scan Day will probably be November 4. That is the day when we will decide whether I will add on two extra cycles of chemo and whether I qualify for the clinical trial of the experimental drug to keep the cancer from starting to grow again.
Even if I add in the two extra cycles of chemo, I'll be done with chemo on December 3, and Dr Reidel says that is long enough recovery time to fly at Christmas. I can go on a cruise! And I will not miss any treatment to to do it!
If I do qualify for the clinical trial, then super luckily, the clinical trial is a daily pill that I would administer to myself with minimal side effects and monitoring that does not need to occur on a weekly basis. So I can do it while on vacation without putting anything in jeopardy.
Dr Reidel said that there is no strong evidence that the two extra cycles offer substantial benefit and that he is leaning toward my immediately starting the clinical trial instead -- if I qualify.
Of course I will certainly do the two extra cycles if he says to, but I will admit that I would rather be done with chemo after six cycles.
So, this evening Lou and I settled on a Princess cruise! We'll be on the fabulous new Ruby Princess which has [gasp] a SUSHI restaurant onboard. Imagine my excitement!
My next Scan Day will probably be November 4. That is the day when we will decide whether I will add on two extra cycles of chemo and whether I qualify for the clinical trial of the experimental drug to keep the cancer from starting to grow again.
Even if I add in the two extra cycles of chemo, I'll be done with chemo on December 3, and Dr Reidel says that is long enough recovery time to fly at Christmas. I can go on a cruise! And I will not miss any treatment to to do it!
If I do qualify for the clinical trial, then super luckily, the clinical trial is a daily pill that I would administer to myself with minimal side effects and monitoring that does not need to occur on a weekly basis. So I can do it while on vacation without putting anything in jeopardy.
Dr Reidel said that there is no strong evidence that the two extra cycles offer substantial benefit and that he is leaning toward my immediately starting the clinical trial instead -- if I qualify.
Of course I will certainly do the two extra cycles if he says to, but I will admit that I would rather be done with chemo after six cycles.
So, this evening Lou and I settled on a Princess cruise! We'll be on the fabulous new Ruby Princess which has [gasp] a SUSHI restaurant onboard. Imagine my excitement!
Hints About the Future
I haven't mentioned any of this to you yet, but last week Dr Reidel gave me some hints about what the future might hold for me.
I am in the middle of Cycle 5 of Gem/Tax, and we originally planned six cycles of Gem/Tax followed by another Scan Day. I think that puts Scan Day on November 5, 2009. Here's where the hints about the future come in, and they all depend on what we learn on Scan Day:
I am unclear of what happens if I add on two more cycles of chemo -- can I do the clinical trial after that?
It is totally okay that I do not have all the details at this point. This was just a preliminary chat about what might happen. I like that because it gives me time to adjust my thinking.
My big questions for Dr Reidel today involve VACATION PLANS. Lou and I are desperate to go on vacation. We get that week between Christmas and New Year's off, and we have been looking at ten-day Southern Caribbean cruises on Princess.
I want to find out today what the chances are for my being able to fly and cruise and snorkle and shop and nap in a lounge chair on the Lido Deck with a good book in my lap... If I am in the clinical trial, can the shipboard doctor give me the weekly pill? Is it possible to delay the start of the clinical trial? Should we book a cruise now or wait till Scan Day? Will I need sunscreen 200 SPF?
We love cruises. We basically check in to a luxury hotel, unpack once, and wake up every morning in a fabulous new place. We have been on twelve cruises so far and hope to go on many more, God willing. Our first cruise was to Alaska in 1997, which was our five-year delayed honeymoon. If you are interested, you can see pictures from all our cruises on http://www.rossranch.com/.
I am in the middle of Cycle 5 of Gem/Tax, and we originally planned six cycles of Gem/Tax followed by another Scan Day. I think that puts Scan Day on November 5, 2009. Here's where the hints about the future come in, and they all depend on what we learn on Scan Day:
- If I get significant shrinkage again, and if I can tolerate more chemo, we will add on two more cycles of Gem/Tax (6 weeks) in an effort to just totally beat the cancer down and take advantage of how well Gem/Tax is working.
- If I get significant shrinkage but I can't tolerate more chemo because my bloodwork is bad or my attitude is bad, we do not add any any more chemo and instead go to monitoring on a two-month schedule. (What are the chances that my attitude will be bad?! Zip!)
- Instead of monitoring, there is a chance that I can join a clinical trial of some drug they are testing to slow the rate of the cancer starting to grow again. I did not get the drug name. I think Dr Reidel said it is a weekly pill drug with minimal side effects. I know for sure he said that they already have eleven patients in this trial. I said ABSOLUTELY YES I am interested. I want anything they can give me. We'll all just have to pray that I get the actual drug and not the fricking sugar pill!
- If I do not get significant shrinkage, then I think we go to monitoring or the clinical trial. I think that you have to show that at least some improvement occurred between the third-cycle Scan Day and the sixth-cycle Scan Day to get into the clinical trial.
I am unclear of what happens if I add on two more cycles of chemo -- can I do the clinical trial after that?
It is totally okay that I do not have all the details at this point. This was just a preliminary chat about what might happen. I like that because it gives me time to adjust my thinking.
My big questions for Dr Reidel today involve VACATION PLANS. Lou and I are desperate to go on vacation. We get that week between Christmas and New Year's off, and we have been looking at ten-day Southern Caribbean cruises on Princess.
I want to find out today what the chances are for my being able to fly and cruise and snorkle and shop and nap in a lounge chair on the Lido Deck with a good book in my lap... If I am in the clinical trial, can the shipboard doctor give me the weekly pill? Is it possible to delay the start of the clinical trial? Should we book a cruise now or wait till Scan Day? Will I need sunscreen 200 SPF?
We love cruises. We basically check in to a luxury hotel, unpack once, and wake up every morning in a fabulous new place. We have been on twelve cruises so far and hope to go on many more, God willing. Our first cruise was to Alaska in 1997, which was our five-year delayed honeymoon. If you are interested, you can see pictures from all our cruises on http://www.rossranch.com/.
QUICK UPDATES FOR OCT
Saturday 10-31-09: Happy Halloween!
Friday 10-30-09: Woke up in pain from the bulging disc. My head was also ringing. I have to admit I was down in the dumps last evening; tired of not feeling good. But yesterday was a little better, and I hope today is a little better too.
Thursday 10-29-09: I guess to lie in bed for two days is not so good for a bulging disc!
Wednesday 10-28-09: Woke up in pain from both the bulging disc and all the bones in my back. Ate breakfast and went right back to bed. Pathetic! I would be happier if I had a good book to read. I am suddenly feeling dizzy and have the Unspeakable Side Effect, so I am headed back to bed. Later!
Tuesday 10-27-09: Dizzy this morning! Darn. Had a migraine after lunch. Spent the day in bed. Listened to the radio for awhile.
Monday 10-26-09: The low dose Advil regimen is really helping with the bulging disc! The left hip pain is greatly reduced. I feel pretty good right now. My ribs ache, my mouth is dry, my feet are numb, but I am NOT tired. I got a migraine yesterday afternoon, but the Immitrex stopped it in its tracks. It was amazing.
Sunday 10-25-09: Gosh I feel as though have been sleeping since Super Chemo on Thursday! I have been waking up at 9:00AM, taking long afternoon naps, and then crawling into bed completely exhausted at night. In the few hours I managed to stay awake, I had a lot of laughs with Cindy this weekend! What a great visit. Cindy drove us around, which was a super treat. Lou and I dropped Cindy off at the airport just before noon, grocery shopped, and now we are finally home. I am seriously ready to put my pajamas back on and go take a nap. Otherwise, I feel good! Just sleepy.
Thursday 10-22-09 Evening Update: Super Chemo went really well. They put me in a bed instead of a chair, which was just wonderful and comfy. My chemo was supposed to be at 12:30 but I didn't get called till 3:00 because they were really busy. I was reading a great book and did not get upset. It is what it is. Managed to keep ice in my mouth the entire hour of Docetaxel! Tomorrow is a vacation day, and Cindy arrives.
Thursday 10-22-09: Had a pretty good night's sleep with Ambien to counteract the 40 ml Decadron I had to take yesterday. (I am taking Ambien 3 nights out of each chemo cycle, and Lou has control of the bottle, because I have heard really bad things about sleeping pills.) Slept 6.5 hours; got up when when Lou's coffee maker started grinding the beans, hoped to bring him a cup in bed, but he got up too. Feeling pretty good. Time to go make breakfast!
Wednesday 10-21-09: Had to get up early today because Lou has a doctor appointment. Kind of nice when someone else is seeing the doctor! Started taking the Decadron today, so could not have my favorite mug of tea with breakfast. Decaf instant coffee for the next five days because any caffeine will make me MANIC.
Tuesday 10-20-09: Yesterday I had my three doses of Advil, eight hours apart, at 10AM, 6PM, and then 2AM. I've been waking up at 2 or 3 in the morning in pain anyway, so that third dose was no trouble. Today my Advil schedule is 7:30AM, 3:30PM, and 11:30PM. Feeling pretty darn good!
Monday 10-19-09: Feeling pretty darned good!
Sunday 10-18-09: Slept late again! Did not sleep well, though. Woke up multiple times in pain from sleeping in the wrong position. There is only one position where the hip does not hurt, and I can't seem to stay in that position when I am asleep. Feeling pretty good, otherwise.
Saturday 10-17-09: Slept really late! Lou woke me up at 9:00AM with a cup of tea in bed. I'm telling you, I'm married to the best guy on the planet. My hip pain is about half what it was on Thursday. Feeling really great, which is good because we have a big list of errands to do today.
Friday 10-16-09: MRI today at 11:00AM. I forgot to ask when I will hear the results! (Have not even had it yet, and I already want the results.) Woke up pretty early, WIDE AWAKE and feeling good. Got through a bunch of email at work. I actually got to exchange email in real time with a collegue in India! What a great way to start the day. My plan is to go to the office after the MRI.
Thursday 10-15-09: Easy Chemo today!
Wednesday 10-14-09: It is going to be in the mid 50s today! Time to break out some long sleeves, maybe a cardigan. I wonder how the wig will look with a turtleneck?
Monday 10-12-09: Slept till after 8:00AM this morning and woke up with sinus congestion, sore throat, and hip pain. I didn't post all weekend because my hip has ached all weekend, and I did not want to post that. Luckily, the ache goes away when I take Advil and/or Tylenol. This morning I will call my medical oncologist and report that my hip hurts. (My CyberKnife doctor said to call him if my hip started to hurt again, but I will start with my oncologist.)
Friday 10-12-09: Had a lot of hip pain last night, which I think must be from sitting on this uncomfortable wooden chair in my home office all week. Feel okay and plan to go in to work where I have a nice office chair waiting for me.
Thursday 10-08-09: Today I have the Unspeakable Side Effect, so I am working from home.
Wednesday 10-07-09: Got a migraine last night but Immitrex seemed to work okay. This morning I feel tired.
Tuesday 10-06-09: Yesterday went downhill fast with dizziness. Gosh at one point I was sure I was going to hit the floor; I just hung on to an inside doorway and waited for it to pass. Dr Reidel suggested that it might be dehydration so I aggressively re-hydrated yesterday and that has helped. So far today, not feeling like I am gonna pass out!
Monday 10-05-09: All done taking Decardon for this cycle! Looking forward to a really good night's sleep tonight. Plus I got to drink my regular caffeinated tea (with Splenda) at breakfast this morning. Have some bone pain and other yucky side effects this morning, so I am planning to work from home (in case in gets worse). But I am not tired at all and am looking forward to putting in a full day's work.
Sunday 10-04-09: Woke up a lot last night. Finally gave up trying to make myself sleep at 6:00AM. Feel pretty good this morning except ears are ringing and feet are numb. The bones in my upper back woke me up but Advil took care of that around 4:00AM.
Saturday 10-03-09: Slept till after 8:00AM this morning and feel very good so far. I am working remotely this morning; Lou is too, so the house is pretty quiet. Yesterday I was tired. I had my Neulasta shot and headed home to collapse on the couch. Really liking the new Flash Forward TV show.
Thursday 10-01-09: Late update: Came home from Super Chemo very happy but very tired. Dragged around so sleepy and then around 8PM WOKE UP just when I should have been crawling into bed. I hope I can sleep tonight.
Thursday 10-01-09: Welcome to October! Gosh this year is flying by! I woke up every 90 minutes last night and finally gave up trying to sleep at 4:30AM. I read Harry Potter book 5 for awhile, puttered around the house, and then made Lou an awesome Maltby Cafe stype potato/egg/cheese breakfast. I feel very good and look forward to SUPER CHEMO today.
Friday 10-30-09: Woke up in pain from the bulging disc. My head was also ringing. I have to admit I was down in the dumps last evening; tired of not feeling good. But yesterday was a little better, and I hope today is a little better too.
Thursday 10-29-09: I guess to lie in bed for two days is not so good for a bulging disc!
Wednesday 10-28-09: Woke up in pain from both the bulging disc and all the bones in my back. Ate breakfast and went right back to bed. Pathetic! I would be happier if I had a good book to read. I am suddenly feeling dizzy and have the Unspeakable Side Effect, so I am headed back to bed. Later!
Tuesday 10-27-09: Dizzy this morning! Darn. Had a migraine after lunch. Spent the day in bed. Listened to the radio for awhile.
Monday 10-26-09: The low dose Advil regimen is really helping with the bulging disc! The left hip pain is greatly reduced. I feel pretty good right now. My ribs ache, my mouth is dry, my feet are numb, but I am NOT tired. I got a migraine yesterday afternoon, but the Immitrex stopped it in its tracks. It was amazing.
Sunday 10-25-09: Gosh I feel as though have been sleeping since Super Chemo on Thursday! I have been waking up at 9:00AM, taking long afternoon naps, and then crawling into bed completely exhausted at night. In the few hours I managed to stay awake, I had a lot of laughs with Cindy this weekend! What a great visit. Cindy drove us around, which was a super treat. Lou and I dropped Cindy off at the airport just before noon, grocery shopped, and now we are finally home. I am seriously ready to put my pajamas back on and go take a nap. Otherwise, I feel good! Just sleepy.
Thursday 10-22-09 Evening Update: Super Chemo went really well. They put me in a bed instead of a chair, which was just wonderful and comfy. My chemo was supposed to be at 12:30 but I didn't get called till 3:00 because they were really busy. I was reading a great book and did not get upset. It is what it is. Managed to keep ice in my mouth the entire hour of Docetaxel! Tomorrow is a vacation day, and Cindy arrives.
Thursday 10-22-09: Had a pretty good night's sleep with Ambien to counteract the 40 ml Decadron I had to take yesterday. (I am taking Ambien 3 nights out of each chemo cycle, and Lou has control of the bottle, because I have heard really bad things about sleeping pills.) Slept 6.5 hours; got up when when Lou's coffee maker started grinding the beans, hoped to bring him a cup in bed, but he got up too. Feeling pretty good. Time to go make breakfast!
Wednesday 10-21-09: Had to get up early today because Lou has a doctor appointment. Kind of nice when someone else is seeing the doctor! Started taking the Decadron today, so could not have my favorite mug of tea with breakfast. Decaf instant coffee for the next five days because any caffeine will make me MANIC.
Tuesday 10-20-09: Yesterday I had my three doses of Advil, eight hours apart, at 10AM, 6PM, and then 2AM. I've been waking up at 2 or 3 in the morning in pain anyway, so that third dose was no trouble. Today my Advil schedule is 7:30AM, 3:30PM, and 11:30PM. Feeling pretty darn good!
Monday 10-19-09: Feeling pretty darned good!
Sunday 10-18-09: Slept late again! Did not sleep well, though. Woke up multiple times in pain from sleeping in the wrong position. There is only one position where the hip does not hurt, and I can't seem to stay in that position when I am asleep. Feeling pretty good, otherwise.
Saturday 10-17-09: Slept really late! Lou woke me up at 9:00AM with a cup of tea in bed. I'm telling you, I'm married to the best guy on the planet. My hip pain is about half what it was on Thursday. Feeling really great, which is good because we have a big list of errands to do today.
Friday 10-16-09: MRI today at 11:00AM. I forgot to ask when I will hear the results! (Have not even had it yet, and I already want the results.) Woke up pretty early, WIDE AWAKE and feeling good. Got through a bunch of email at work. I actually got to exchange email in real time with a collegue in India! What a great way to start the day. My plan is to go to the office after the MRI.
Thursday 10-15-09: Easy Chemo today!
Wednesday 10-14-09: It is going to be in the mid 50s today! Time to break out some long sleeves, maybe a cardigan. I wonder how the wig will look with a turtleneck?
Monday 10-12-09: Slept till after 8:00AM this morning and woke up with sinus congestion, sore throat, and hip pain. I didn't post all weekend because my hip has ached all weekend, and I did not want to post that. Luckily, the ache goes away when I take Advil and/or Tylenol. This morning I will call my medical oncologist and report that my hip hurts. (My CyberKnife doctor said to call him if my hip started to hurt again, but I will start with my oncologist.)
Friday 10-12-09: Had a lot of hip pain last night, which I think must be from sitting on this uncomfortable wooden chair in my home office all week. Feel okay and plan to go in to work where I have a nice office chair waiting for me.
Thursday 10-08-09: Today I have the Unspeakable Side Effect, so I am working from home.
Wednesday 10-07-09: Got a migraine last night but Immitrex seemed to work okay. This morning I feel tired.
Tuesday 10-06-09: Yesterday went downhill fast with dizziness. Gosh at one point I was sure I was going to hit the floor; I just hung on to an inside doorway and waited for it to pass. Dr Reidel suggested that it might be dehydration so I aggressively re-hydrated yesterday and that has helped. So far today, not feeling like I am gonna pass out!
Monday 10-05-09: All done taking Decardon for this cycle! Looking forward to a really good night's sleep tonight. Plus I got to drink my regular caffeinated tea (with Splenda) at breakfast this morning. Have some bone pain and other yucky side effects this morning, so I am planning to work from home (in case in gets worse). But I am not tired at all and am looking forward to putting in a full day's work.
Sunday 10-04-09: Woke up a lot last night. Finally gave up trying to make myself sleep at 6:00AM. Feel pretty good this morning except ears are ringing and feet are numb. The bones in my upper back woke me up but Advil took care of that around 4:00AM.
Saturday 10-03-09: Slept till after 8:00AM this morning and feel very good so far. I am working remotely this morning; Lou is too, so the house is pretty quiet. Yesterday I was tired. I had my Neulasta shot and headed home to collapse on the couch. Really liking the new Flash Forward TV show.
Thursday 10-01-09: Late update: Came home from Super Chemo very happy but very tired. Dragged around so sleepy and then around 8PM WOKE UP just when I should have been crawling into bed. I hope I can sleep tonight.
Thursday 10-01-09: Welcome to October! Gosh this year is flying by! I woke up every 90 minutes last night and finally gave up trying to sleep at 4:30AM. I read Harry Potter book 5 for awhile, puttered around the house, and then made Lou an awesome Maltby Cafe stype potato/egg/cheese breakfast. I feel very good and look forward to SUPER CHEMO today.
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