Yet Another Week Gone

We've completed week 4 of the second round of arsenic. Tim's blood numbers are stable. We've figured out how to handle the methotrexate. So even that goes down without problem, if not easily. We had a long talk with the psychologist today. Not fun or comfortable, but probably useful. Tim is hoping to get out and have a little fun this weekend. We're going to try to take in a movie with the boys. We may even get to church.

We both hope and dread the end of the arsenic. We aren't looking forward to the stem cell transplant except as the beginning of the end. We hope that everything will go well and that we'll return to a normal life on the other side. However, we have faced so many setbacks over the years that we also greatly fear that even if the transplant is successful, the leukemia will return. At the moment, we are trying very hard to enjoy the present as much as possible and let the future arrive in its own good time.

Sister Stephanie Serves Sick in Chicago

We have Tim's aunt with us this week. Sr. Stephanie is a Franciscan nun who has been running a retreat center in Abingdon, Virginia, for the last eight years. She took Tim to the hospital today, which gave me time to run a bunch of errands. Tim's blood numbers were pretty good yesterday. He's not neutropenic, so we're hoping to get to a movie this week. Tim's a little tired of not seeing anyplace but the cancer center or our house.

I spoke to the transplant coordinator at NMH today. She confirmed that Dr. Tallman is waiting for the results of the February 19 bone biopsy before deciding on the next step. So we won't know when the transplant will begin until the biopsy results are back. Since that takes a week, it will probably be March before we know where we go next.

Stem Cell Harvesting - Day 3

From Tim's sister Sharon:

Note from the stem cell buddy: You may wonder why this is the Day 3 message, after yesterday's message....turns out that Julie didn't donate yesterday, after all, despite how positive the email sounded. Her platelet count was too low, so there was some concern that she wouldn't have enough left for clotting after they take the catheter out of her neck. So, they sent her home to build up the platelets a bit and take some more neupogen and come back today. So, this morning, we knew she'd get hooked up for harvesting, the only question was for how long. Julie's message for today, starts below.....

Greetings from Northwestern Memorial Hospital!

I'm multi-tasking - harvesting stem cells and writing this email at the same time. We're doing a half collection today (10 liters). We started around 9:30 am and should be done with harvesting around Noon. Then it'll take about a half hour to get the catheter removed from my neck. The donation process will be over, Sharon and I will be free to go and I'll be heading home tomorrow.

My platelet count was 110 this morning before the harvesting began. So it's about the same as yesterday. But seems like the 3 shots of Neupogen last night are kicking in - it's estimated that over 5 million stem cells will be collected today (which would top my personal best from Tuesday of 4.37 million).

Thanks, Sharon, for being a great stem cell harvesting buddy. She's used to getting up early in the morning, she doesn't mind driving in snowy weather, and she's able to keep herself entertained during those stretches at the hospital where's there's nothing that needs doing (e.g., like when you're waiting for test results or catheter insertion or a visit from the Harvest Coordinator). Also, like she said in her email yesterday, she's taken lots of photos to document this experience.

Things have gone relatively smoothly. Hopefully this trend will continue into the transplant phase. Please continue to pray for and send positive energy to Tim, Jen, Theo, and Brendan.

Bye for now,
Julie

Stem Cell Update

From Tim's sister Sharon:

We're back at the hospital for day 2 of harvesting. For a 5' 3-1/2" person weighing a mere 125 lbs, Julie was a real trooper on day 1. While watching the inauguration (why is it that no one was really covering the parade--you know the marching bands part of the parade--anyway?), they sucked out lots of stem cells (over 4 million), and since she's in the neighborhood and on the Neupogen already and they like to have extra just in case (and for the research that they might decide to do that Julie signed the consent form for), she's getting hooked up again today for as much as her platelets will allow.

Tim said he'd settle for average stem cells, but Julie thought at least above average was needed. I added strong and good looking, probably cuz we're much closer to Lake Wobegon country here....

Julie is a model patient, from a patients' rights perspective--she makes it a point to learn everyone's name and calls them by it (very handy if your machine starts beeping ominously), and getting copies of everything she signs. (One of the radiology staff had to go in search of a copy machine.)

I got lots of photos of the harvesting machine, and Julie hooked up to the harvesting machine, and Julie watching the inauguration with tubes sticking out of the right side of her neck (her right side, not yours, looking at her). They won't all get posted, but the machine is pretty amazing, from a medical technology perspective--out goes the blood, through the tube and up and down and around and for a spin in the centrifuge (where the stem cells, being heavier than the rest of the blood parts, fall out). Then it keeps going through tubes and gets some saline added and some calcium and then it goes back into Julie. (Did I mention she has 2 tubes sticking out of her neck.)

The wireless access seems pretty good here, so Tim won't have to complain to the hospital IT staff. If we get bored--no inauguration to watch today--we'll send another message (not up to blogging or tweeting yet--to much to say for a tweet anyway.)

the stem cell donor and donor buddy are now signing off...
ttfn
Julie and sharon

Harvest Day

Today and tomorrow Julie will have her stem cells harvested. Julie arrived last Sunday. She and I spent last Tuesday downtown for her pre-donation physical. On Friday, she received word that all the tests results were fine. That night she started Neupogen injections to boost her stem cell production. Tim's sister Sharon arrived on Sunday. She is acting as Julie's chauffeur and errand runner while Julie is hooked up to the donation machine.

Meanwhile, Tim will continue to receive arsenic and methotrexate through the first week in February. His blood counts have improved to the point where he is no longer neutropenic. We now know why he got so ill from the methotrexate a week and a half ago. It turns out that the nurse withdrew 5ml of fluid instead of the usual 3ml. We (Tim, the nurses and I) are all relieved to have solved that mystery. Last Friday's dose went much better.

Harmonic Convergence

Every type of cancer has a different treatment schedule. It is very unusual to have treatment every day as Tim does. The nurses tell us that some days are very slow with very few patients. Then there are days like today when all the treatment schedules come together as a sort of grand harmonic convergence. Labs take forever, pharmacy takes forever and there aren't enough treatment rooms to go around. Tim is in a double room with another patient and I have been relegated to the most uncomfortable chair. So I have sought refuge in the lounge of the Women's Hospital.

Whew. This is the second time that I have typed all that. I enjoy posting from my phone, but it has it's drawbacks. Two finger typing on a touch screen is not the fastest way to type anything of any length. I also ran afoul of another "feature" of my phone. If you hold down the backspace key, it deletes your entire message. I was trying to back up several letters to correct a mistake and accidentally held the key a little too long. However, as I have plenty of time on my hands at the moment, retyping has killed a good twenty minutes.

We're supposed to get another three inches of snow tonight. I actually had to shovel the roof this morning. From the ground with a roof rake, so don't go thinking that I was climbing around on the roof. Just wading through a foot of snow with a thirty foot long rake, which was bad enough.

Hello, Goodbye

Today we said goodbye to Steven, who's been here for the past week. Many, many thanks to Steven for coming to help out. Many, many thanks to his family for letting him make his third trip to Chicago in as many months. Couldn't have done Christmas without you, Steve. Let me know what beer to buy to have on hand for your next trip.

We also said hello to Julie, Tim's stem-cell donor and sister. Julie will be here for almost two weeks. She has a whirlwind tour of the medical establishment scheduled for Tuesday, followed by a weekend of shots to encourage stem cell production, followed by harvesting next week on Tuesday and Wednesday.

The snow accumulation total was twelve inches. That's enough for awhile. We are looking forward to a high in the single digits later this week. Really missing our winter visit to Mom and Dad in sunny Florida. Maybe next year.

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.

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.

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...

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.