Friday, January 9, 2009
Why Tim hates methotrexate.
Today is one of those days that reinforces Tim's dislike of methotrexate. We did all the premeds exactly the same as last week. Only last week went well and today didn't. Luckily, things haven't been as bad as they could be. Tim's been sick a couple times, but he's resting now. I hope that if he gets a good nap, we'll be able to get home without too much trouble. His nurse agrees with my assessment, so now we wait. Posting from the hospital seemed a good way to pass the time.
Test Results
We got the results of Tim's latest bone biopsy the other day. Although he no longer has leukemia cells in his circulating blood and they aren't visible under the microscope in the bone marrow, there are still leukemia cells present. So Tim hasn't achieved remission yet. Likewise, his spinal fluid is still testing positive not for leukemia cells but for other cells that indicate leukemia is still present. We have spoken to Dr. Tallman, the Northwestern Memorial doctor, about these results. He said that it is not uncommon for more than one course of arsenic to be needed to achieve remission. So he is not planning on changing Tim's treatment. He is also pleased to see that the spinal fluid numbers are improving. However, Dr. Grinblatt, Tim's oncologist in Evanston, wants Tim to return to weekly methotrexate injections. So, not good news, but not bad news.
More fluffy snow today.
More fluffy snow today.
Tuesday, January 6, 2009
Guess What, It's Snowing!
Tim and I went to see the opthamalogist yesterday evening. He told us that Tim's cornea transplant was in good shape, just very dry. So he's adjusted Tim's medication schedule to help with that. What a relief!
Steve took Tim to the hospital today. So I had a normal afternoon at home with the boys. Brendan got to have a friend over. Theo got sole control of the HDTV upstairs. I got to do the laundry, make dinner and pay bills.
Tomorrow will be a busy day. Tim has chemo in Evanston in the morning and an appointment downtown in the late afternoon. Steve and the boys are going out for pizza, since Tim and I could be very late getting home. We've already talked to the chemo nurse about getting some extra anti-nausea medication to help with the drive. Hopefully, by that late in the afternoon, Northwestern will be all caught up and we won't have to wait too long. We won't hold our breath.
Oh, yeah, and there's very pretty, white, fluffy snow falling.
Steve took Tim to the hospital today. So I had a normal afternoon at home with the boys. Brendan got to have a friend over. Theo got sole control of the HDTV upstairs. I got to do the laundry, make dinner and pay bills.
Tomorrow will be a busy day. Tim has chemo in Evanston in the morning and an appointment downtown in the late afternoon. Steve and the boys are going out for pizza, since Tim and I could be very late getting home. We've already talked to the chemo nurse about getting some extra anti-nausea medication to help with the drive. Hopefully, by that late in the afternoon, Northwestern will be all caught up and we won't have to wait too long. We won't hold our breath.
Oh, yeah, and there's very pretty, white, fluffy snow falling.
Sunday, January 4, 2009
The Calm Before the Storm
When someone in your family has cancer, you have to enjoy the (relatively) good days, because bad days are sure to follow. We have been enjoying a good couple of days. Other than being extremely fatigued, Tim has felt a little more like his old self lately. He even hooked up his computer and downloaded his email. He is trying to get his gmail account to send mail directly to his phone, rather than getting lost in the mass of work email. Once he gets this working, I will let you know.
Brendan taught Tim and I to play rock band last night. I'd like to boast a bit and say that I was better at drums than Tim was. Tim will tell you that it's the chemo brain. I also think that actually having training on drums is a disadvantage. You have to connect the eye and hand and disconnect the ear, in my opinion. Since Tim's eyesight has been negatively affected by the chemo, this really doesn't help.
Theo got his very own phone for New Year's. So he's joined the texting generation. He's also started going out with his friends to the mall and to movies. I guess we should get used to living with a teenager in our house. He's even started to sleep like a teenage boy. I think I made him get out of bed at 10am the other day.
Tomorrow we start the consolidation round of arsenic. We are seeing fewer leukemia cells in his blood, so we hope that things are working. His platelet count is up, which is good. His hemoglobin count is low, hence the fatigue, but it is stable. Unfortunately, his white count is very low and the doctor doesn't know why. So Tim has to stay away from people, fresh fruit and flowers.
Tim's siblings (and aunt) have graciously volunteered to come out for a week or two at a time to provide us with help through the beginning of February. I am very grateful for the assistance. Knowing that there's someone at home for the boys no matter how long the hospital takes is a great stress reliever for me.
We will continue to enjoy this respite for however long it lasts. Hopefully, whenever the low comes, it won't be too bad. Tim is worried about the cornea transplant he had last summer. He said that the vision in that eye is quite bad. So we will be contacting the opthamalogist tomorrow. That is our biggest cloud at the moment. That and knowing that twenty five days of arsenic and two weeks of ATRA start again tomorrow. Soldiering on...
Brendan taught Tim and I to play rock band last night. I'd like to boast a bit and say that I was better at drums than Tim was. Tim will tell you that it's the chemo brain. I also think that actually having training on drums is a disadvantage. You have to connect the eye and hand and disconnect the ear, in my opinion. Since Tim's eyesight has been negatively affected by the chemo, this really doesn't help.
Theo got his very own phone for New Year's. So he's joined the texting generation. He's also started going out with his friends to the mall and to movies. I guess we should get used to living with a teenager in our house. He's even started to sleep like a teenage boy. I think I made him get out of bed at 10am the other day.
Tomorrow we start the consolidation round of arsenic. We are seeing fewer leukemia cells in his blood, so we hope that things are working. His platelet count is up, which is good. His hemoglobin count is low, hence the fatigue, but it is stable. Unfortunately, his white count is very low and the doctor doesn't know why. So Tim has to stay away from people, fresh fruit and flowers.
Tim's siblings (and aunt) have graciously volunteered to come out for a week or two at a time to provide us with help through the beginning of February. I am very grateful for the assistance. Knowing that there's someone at home for the boys no matter how long the hospital takes is a great stress reliever for me.
We will continue to enjoy this respite for however long it lasts. Hopefully, whenever the low comes, it won't be too bad. Tim is worried about the cornea transplant he had last summer. He said that the vision in that eye is quite bad. So we will be contacting the opthamalogist tomorrow. That is our biggest cloud at the moment. That and knowing that twenty five days of arsenic and two weeks of ATRA start again tomorrow. Soldiering on...
Thursday, January 1, 2009
Happy New Year
Well, I can't say as it's been a happy new year so far. Hopefully, we will end better than we begin. We've been having a break from chemo and visits to the hospital. Tim has been feeling very run down. His hemoglobin count is very low, which accounts for a lot of that. His white blood cell count is also low, so we're hoping he doesn't catch the cold that's been running around the house. Tomorrow Tim has a methotrexate injection and a bone marrow biopsy. Next week we start arsenic again.
Thanks to my folks, who've been here the last two weeks. They've had enough winter and they're heading south again. Tim's brother Steven arrives Sunday for a week's stay.
Thanks to my folks, who've been here the last two weeks. They've had enough winter and they're heading south again. Tim's brother Steven arrives Sunday for a week's stay.
Sunday, December 21, 2008
Changing of the Guard
Tim's sister Amy left us on Tuesday. Her daughter had hoped that Amy could make a snowman and take a picture of it. However, it warmed up just as Amy arrived and didn't snow again until the day she left. She did make it home safely, if a little later than originally planned. Thanks, Amy, for your visit. Thanks to Amy's family for managing without Mommy for a week.
My parents arrived Wednesday afternoon. They've been real troopers. Mom's been doing laundry, grocery shopping and making Christmas cookies. Dad's done some electrical repairs and lots of snow shoveling, as we've had two snow storms since they've been here.
My parents will stay until January 1. After that, things are still up in the air. Tim's sister Sharon is coming out the third week in January. His other siblings have expressed a willingness to come out again, but there are no definitive travel plans at this time. I had hoped that by this point in Tim's treatment we'd be able to manage on our own. However, we spend so much time at the hospital every single day, that keeping the rest of the house and the kids going on my own is just overwhelming. So I appreciate the help very much. Many people have offered to come and help, but coordinating outside help is just another chore that I really don't have the time or energy to do. Having a relative staying here means that things can happen whether I'm home or not.
My parents arrived Wednesday afternoon. They've been real troopers. Mom's been doing laundry, grocery shopping and making Christmas cookies. Dad's done some electrical repairs and lots of snow shoveling, as we've had two snow storms since they've been here.
My parents will stay until January 1. After that, things are still up in the air. Tim's sister Sharon is coming out the third week in January. His other siblings have expressed a willingness to come out again, but there are no definitive travel plans at this time. I had hoped that by this point in Tim's treatment we'd be able to manage on our own. However, we spend so much time at the hospital every single day, that keeping the rest of the house and the kids going on my own is just overwhelming. So I appreciate the help very much. Many people have offered to come and help, but coordinating outside help is just another chore that I really don't have the time or energy to do. Having a relative staying here means that things can happen whether I'm home or not.
Good News, Bad News
I apologize for the lack of posts this past week. I've just been totally exhausted. Last week has been full of ups and downs. Here's a little summary of our week:
On Tuesday, we got four inches of lovely, white, fluffy snow that practically guaranteed us a white Christmas. Unfortunately, it all fell while we were trying to drive home from the hospital. A fifteen minute trip took half an hour. Tim gets carsick very easily these days. We made it all the way home, but not into the house before he got sick.
On Wednesday, we had to drive downtown to see Dr. T. We were running a little late. Unfortunately, the hospital was running later. Tim was scheduled for a blood draw and a fifteen minute doctor consultation. It took us two hours to do what should have taken forty-five minutes at most. We then had to drive back up to Evanston for his chemo. Did I mention that Tim gets carsick very easily these days?
On a brighter note, Dr. T suggested that Tim take a two week break from the ATRA. Since this drug gives Tim a headache and makes him nauseous, this was a very welcome suggestion. We also got word that HMO Illinois has approved going out of network to Northwestern Memorial and Dr. T for the stem cell transplant. So that's one worry gone. Dr. T also told us that Julie looks like the best candidate for Tim's stem cell donor.
On Thursday, there was a mix up with Tim's chemo. The arsenic was infused over one hour instead of two. Luckily, this mix up didn't cause Tim any problems.
On Friday, Tim had arsenic and methotrexate. Unfortunately, there wasn't a bed available when we arrived at the cancer center. They like to do the methotrexate in a bed, because it's easier for the nurses. It's also better for Tim if he has a bad reaction to the methotrexate. So we started the arsenic in one treatment room and moved to another when a bed became available. I don't know if it was the premeds or the lack of ATRA, but Tim was actually able to walk to the car after the methotrexate for the first time since before Thanksgiving.
We now have a break from chemo until after the New Year. Tim has to go in on December 26 for blood tests, to make sure that everything is going well. On January 2, Tim will have more blood tests, a methotrexate injection and a bone marrow biopsy. We resume arsenic infusions on January 5.
On Tuesday, we got four inches of lovely, white, fluffy snow that practically guaranteed us a white Christmas. Unfortunately, it all fell while we were trying to drive home from the hospital. A fifteen minute trip took half an hour. Tim gets carsick very easily these days. We made it all the way home, but not into the house before he got sick.
On Wednesday, we had to drive downtown to see Dr. T. We were running a little late. Unfortunately, the hospital was running later. Tim was scheduled for a blood draw and a fifteen minute doctor consultation. It took us two hours to do what should have taken forty-five minutes at most. We then had to drive back up to Evanston for his chemo. Did I mention that Tim gets carsick very easily these days?
On a brighter note, Dr. T suggested that Tim take a two week break from the ATRA. Since this drug gives Tim a headache and makes him nauseous, this was a very welcome suggestion. We also got word that HMO Illinois has approved going out of network to Northwestern Memorial and Dr. T for the stem cell transplant. So that's one worry gone. Dr. T also told us that Julie looks like the best candidate for Tim's stem cell donor.
On Thursday, there was a mix up with Tim's chemo. The arsenic was infused over one hour instead of two. Luckily, this mix up didn't cause Tim any problems.
On Friday, Tim had arsenic and methotrexate. Unfortunately, there wasn't a bed available when we arrived at the cancer center. They like to do the methotrexate in a bed, because it's easier for the nurses. It's also better for Tim if he has a bad reaction to the methotrexate. So we started the arsenic in one treatment room and moved to another when a bed became available. I don't know if it was the premeds or the lack of ATRA, but Tim was actually able to walk to the car after the methotrexate for the first time since before Thanksgiving.
We now have a break from chemo until after the New Year. Tim has to go in on December 26 for blood tests, to make sure that everything is going well. On January 2, Tim will have more blood tests, a methotrexate injection and a bone marrow biopsy. We resume arsenic infusions on January 5.
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