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.

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.

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.

Another Week Gone

Well, we've made it through another week of arsenic. We've even survived another methotrexate injection. We're making progress with Tim's medication. The palliative care specialist has given us an entire range of dosing levels for Tim's pain medication to take care of everything from mild pain to horrible awful pain. So we're pretty stable for the moment. Now we just hope that all the chemotherapy is doing its job.

Northwestern Memorial has begun the process of getting approval for the stem cell transplant. There appears to be some confusion about whether or not the insurance company will cover the cost of typing Julie and Amy, Tim's two candidate donors. Hopefully, this will all be straightened out soon. Unfortunately, it probably won't be fixed before Julie leaves us next week.

Coming Home Today

Tim is feeling better this morning. The MS Contin seems to be taking care of his pain. We will be at the hospital for his daily arsenic treatment and then we'll go home. We also hope to meet with a palliative care (pain) specialist today. We will still have to come in on Thanksgiving for arsenic.

A Couple of Days in the Clink

Just a brief post to let you all know that Tim is in the hospital as of this evening. Today's methotrexate shot made him violently ill. The doctor decided to keep him overnight so he can get IV fluids. The current plan is for Tim to stay through Thanksgiving Day. He'll get his arsenic, which we were going to have to do in-patient anyway, and then go home Thursday evening. We will spend then next two days working to better manage his side effects.

Downtown with Dr. T

We drove downtown yesterday morning to meet with Dr. T at Northwestern Memorial. Dr. T is an expert in APL. We anticipate that Tim will have his allogenic bone marrow transplant at Northwestern Memorial. Dr. T told us that while it is very rare to relapse as Tim has, it is still possible for Tim to achieve a complete and lasting remission this time around. Dr. T and Dr. G (our Evanston oncologist) have agreed on the following course of treatment: five weeks of Monday through Friday arsenic treatments, two weeks off, five additional weeks of Monday through Friday arsenic treatments followed by an allogenic stem cell transplant.

So, if you're keeping track, that means three things. First, we don't have to go into the hospital on weekends for arsenic treatment. (Yeah!) Second, Tim's two weeks off are the week of Christmas and the week of New Year's. (Double Yeah!) Third, the stem cell transplant will probably take place in mid-February. (Sigh.)

We saw Dr. G yesterday afternoon. He told us that Tim's spinal fluid appears to be responding to the methotrexate treatments. He believes that it will be possible to cut back to one methotrexate treatment a week. Tim had steriods before yesterday's methotrexate injection. That seemed to help a lot with his nauseau. We are also cutting back on his ATRA dose to see if that will help with his headaches. We are still working on the nerve pain. Dr. T said to go back to the neurologist for suggestions.

If at First You Don't Succeed

Today was the first day that we were able to use Tim's port for the chemotherapy. This was supposed to make everything so much easier. Of course, it didn't. The nurse hooked up the chemotherapy and about fifteen minutes later Tim complained that the port hurt. It turns out that the nurse didn't have the needle completely inserted into the port and the chemotherapy was not going into the vein but under his skin. Fortunately, the nurse was able to squeeze out a lot of the fluid that had bubbled under his skin and the arsenic is not toxic to your tissues the way that many chemotherapy agents are. Unfortunately, she wasn't able to properly insert the needle on her second try, either. She ended up paging the nurse who helped install the port. He came up with an extra long needle and after a couple more sticks, they were finally able to get the arsenic going.

Sometimes we just feel cursed. It seems like every complication known to modern medicine, and a few that aren't, crop up at every turn. It's never as simple or as pain free as the doctors tells us it's going to be. Forgive me if I'm just a bit skeptical about medical advice at this point.

Is it Friday Yet?

It's been a long week and it's only Tuesday. We have had a very busy two days. Fortunately, we have had Aunt Mary here to help out. We've had flu shots, dentist appointments, piano lessons, saxaphone lessons, homework, playdates, cub scouts, laundry, groceries and errands. Oh, yes, and two doses of arsenic and one of methotrexate.

Tim is still feeling very poorly. The oncologist tells us that the Lyrica may take up to a week to have any effect on the nerve pain. In the meantime, we have changed to a stronger narcotic. It makes Tim drowsy and woozy, but at this point, that is preferable to the pain. We are just hoping that we can hold on through this bad patch and that things will improve soon. It takes awhile for the chemotherapy to really do its thing, so we just have to grit our teeth and endure.

I am very tired. The last two days have just been go, go, go. It's been great to have Mary here to help out. Thank you to Mary's family for doing without Mom for a few days. In addition to childcare, laundry and dishes, Mary's helped me with a couple around the house projects. It's nice to be able to cross those off my list.

Tim will continue to have arsenic every day this week. We are waiting on test results to see if he will need another methotrexate injection this week. We are also waiting on final word about the need for arsenic on Saturday and Sunday. We meet the Northwestern Memorial specialist on Friday, so we'll see what he has to say. We don't expect to hear anything different, as Dr. G. has been consulting with Dr. T, the NMH guy, all along.

Gurgle, Gurgle

Tim had another methotrexate treatment yesterday. The nurses press on the Ommaya several times before and after injecting the methotrexate. This forces the resevoir to empty and refill, thus encouraging the drug to mix throughout the spinal fluid. Tim said that pressing on the Ommaya makes a gurgling sound inside his head - in stereo. Of course, there's nothing to hear on the outside.

Tim's been having a bad week. His skin has been extremely sensitive. Just having his clothes rub against his skin hurts. It's a lot like the shingles pain. We are increasing the amount of Lyrica that he is taking and hope that will help. He also has his typical post-methotrexate spinal headache, nausea and fatigue. I expect he'll spend most of the weekend on the couch.

Coming in to Port

Tim had his third methotrexate injection yesterday. Dr. G. is busy training anyone who is willing how to use the Ommaya. (It is ridiculously easy.) Unfortunately, the injections make him nauseous. We learned this morning to take compazine an hour before taking the ATRA if he's nauseous. Dr. G. withdrew 4ml of spinal fluid to check for cancer. The test results will determine whether or not he receives another methotrexate injection on Friday.

Tim is scheduled to receive a port-o-cath tomorrow. This is a device a lot like his Ommaya, only the resevoirs (Tim will have two) will be under the skin on his chest and the cathethers will go into the vein leading to his heart. Tim was never a candidate for a port before because his platelet counts were always too low to permit the surgery. We think the port will be a lot nicer than the picc and central line that he's used in the past. It can stay in for as long as necessary and is completely under the skin. So we don't have to worry about getting it wet. Tim can even go swimming once the initial scar has healed.

We have an appointment for next week to pull the staples out of his head. We also have an appointment with the specialist at Northwestern Memorial on the day before Thanksgiving. We did get one bit of good news yesterday. Tim's platelet counts were actually up from last Friday. That would seem to indicate that the ATRA is doing it's job. It also deceases the likelihood of Tim needed to be hospitalized at this time.

I have had some feedback from friends and relatives on the blog. They have been largely positive. I told the therapist at Kellogg that it was my new toy. Writing everything down gets it out of my system and helps me "shut the box."

Arsenic and Old ATRA

On Friday, November 7, we got the word that the Ommaya was ready for use. So Dr. G. came up to Tim's hospital room and put it through its paces. It's certainly a lot easier to get an injection in your scalp than in the base of the spine. Tim will be getting methotrexate injections until the CNS leukemia is gone. We don't know how long that will take.

After the chemotherapy shot, they sent us home. Later that evening was when Dr. G. called with the bone marrow biopsy results. He told Tim that he should start taking ATRA right away. ATRA, all-trans retinoic acid, is a vitamin A derivitive that is a specific treatment for APL. It forces the leukemia cells to mature so that they can be targeted by regular chemotherapy and die. So I drove back to the hospital to pick up all the ATRA they could spare. I will get more today (Monday.) God bless HMO Illinois. ATRA is a VERY expensive drug, but the HMO covers it just like any other prescription. Remind me to blog on healthcare. We have decided opinions on health care reform.

Tim hates the ATRA. It's five pills twice a day. They have to be taken on a full stomach or Tim gets sick. ATRA gives Tim a headache and the hiccups. But just after breakfast and just after dinner, Tim takes the ATRA. Next Monday, Tim will start receiving arsenic again. That requires a two-hour IV infusion. A two hour IV usually translates into three hours at the hospital. That's a lot of time staring at the walls in the Kellogg Center. We just hope that this round of arsenic will go a little smoother than last time and won't last as long.

Riding the Rollercoaster in Leukemia Land

When we spoke to the oncologist on November 5, he told us that it is EXTREMELY unusual to see a systemic relapse after a stem cell transplant. The CNS relapse is more common, but still rare. In order to know just what we were dealing with, Dr. G. order more tests on Tim's blood. One of these tests, done on Tim's blood, is called a PCR test. (No, I don't remember what PCR stands for, other than something with chromosomes.) Anyway, the first PCR test results came back negative. For one whole day, we thought that maybe things weren't so bad. Maybe the leukemia was just in the CNS and Tim wouldn't need a stem cell transplant. However, on Friday, Dr. G. performed a bone marrow biopsy. They found leukemia cells in the bone marrow. So Tim does, indeed, have a systemic relapse and will need a stem cell transplant.

That's life in leukemia land for you. One day things are looking up. You feel good or you have the time to do something you really enjoy. You can actually go for hours without feeling totally miserable. Unfortunately, you always come crashing down again at some point. You feel that things will never get better. You'll never get enough sleep, you'll never get caught up on the chores at home or that you (or your spouse) will never get better. The trick is not to get stuck at the bottom of the hill. You can't be happy all the time, but you also don't want to be crying in the pit of despair, either.

Tim and I call it "closing the box." We try to put all the worries and bad feelings away in a little box, put the lid on it and go do other things. Watching funny movies or sports on tv is a good way to close the box. One of the best ways to close the box is to get out of the house or the hospital and do something. Since that usually means you don't feel very sick on those days, it's easier to close the box on those days. Tim is much better at closing the box than I am. His box has a tighter lock, too. Mine never seems to shut completely and I'm always peeking at it to see if bad things are leaking out.

People are always asking me to open my box and tell them how things are going. Sometimes, if I've finally managed to close it, I don't want to open it. So don't be surprised if I tell you that I don't want to talk about how things are going or I don't answer your email or phone call. That's what this blog is for: a way for you to open my box and look inside without my being there.