Help is on the Way

One of the things that has made this last week so hard is the lack of live-in help. I really thought that we could manage on our own. However, it's been very stressful coordinating after school care for the boys when our days at the hospital don't end until 5:30pm or 6:00pm instead of the 4:30pm that we though would be more average. Starting next week, though, that will change. Tim's sister Julie arrives next Wednesday for week. Then his sister Amy will be here for a week. My parents have the last two weeks of the year. I sincerely hope and pray that by then the chemotherapy will have moved beyond the truly awful phase into the merely unpleasant.

I continue to remain grateful to the school, church and cub scout friends that have stepped up in our time of need. Just to let you know, our freezer is full at the moment, so we don't need any more frozen dinners. Desserts, however, are another story. :) Playdates or other activities for the boys are also very useful, especially on weekends.

Unless I call you, I prefer to arrange such assistance by email. I am less prone to making mistakes that way. I am also less likely to snap at you just because you happened to call at a bad time. (I apologize to the two people who caught me making dinner this week. Hunger makes me cranky.) I often forget to check the answering machine when we get home. If I'm in a bad mood, I occasionally forget on purpose. So email is definitely the way to go.

If I don't respond to your email (or your phone message), I'm either a) too busy, b) too tired or c) don't need any help at the moment but am too busy or too tired to write and tell you so without writing something that might be a) rude or b) insulting or c) both. If I do respond, I don't have to worry about being caught in a game of phone tag. So email is the way to go.

If you have an urgent request, call my cell phone. If you don't have my cell phone number and you would like it, send me an email and I'll mail it to you. If you are willing to be a sympathetic ear at odd moments, send me your cell phone number. I have been know to go through the contact list on my phone looking for someone to talk to about my day.

One Month

It's now been one month since we started fighting leukemia again. This last month has been very hard on both Tim and I. The effects of the chemotherapy have been just awful. Tim has spent the majority of the last month in a great deal of pain. The pain has been bad enough to keep him awake at night and make moving around a nightmare. When he hasn't been in pain, he's been doped to the point of incoherence. As hard as it was for me to watch Tim be in such pain, the loopiness from the morphine he's on now is just as bad. He sleeps most of the time. He is unable to follow or remember a conversation. He shakes so bad that he has difficulty doing anything with his hands. His balance is also somewhat suspect.

I know that Tim is tired of being sick. It is so hard to know that we are only at the start of this journey. If the first month is this bad, how much worse will it get? The hours at the hospital have been longer than we hoped. I am extremely tired of spending hours in an uncomfortable chair waiting for doctors or nurses or test results. I don't dare leave because every time I do, I miss an important decision or something gets forgotten or goes wrong.

It has been a bad week to end a bad month. I want to believe that things will turn around soon, but I'm having a hard time having any faith that things will get better.

Reasons To Be Thankful

If you can see, if you can walk,
If you can hear when others talk,
If you have food, enough to eat,
But skip expensive cuts of meat,
If you've a coat for when it's cold,
Though maybe out of style or old,
If you have friends, the kind who care,
If you have health, though only fair,
And have some cash, but not a bank full,
You've got ample reason to be thankful.

Attributed to SCC Boy Scout Council.
Published in Baloo's Bugle,
an on-line newsletter for Cub Scout Leaders.

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.

Sunday in the Suburbs

Tim's brother Steven and his dad, Phil, are in town this weekend. Having a little extra help around the house has been a big help. I was able to get to church in time to sing in the choir for the first time in several weeks. It made me feel very good to make music with my friends for our community. Some of our friends at church have asked how they could help out. Today I asked for volunteers to spend Sunday morning with Tim so that I could sing in the choir. It's a big sacrifice, since I need someone here from 8:00am until 11:30am. I really appreciate it, though, because singing at church is one of my favorite things to do. I didn't realize how much I'd missed it until I was back there this morning.

This has been a very nice day off, courtesy of my brother-in-law and father-in-law. After spending the morning at church, I spent the afternoon on the couch watching the Chicago Bears run all over the St. Louis Rams. (Go, Bears!) Meanwhile, my in-laws were out in the cold raking what is hopefully the last of the leaves into the street. The boys are at a birthday party this afternoon, with transportation generously provided by friends, so I am not refereeing sibling spats. I don't even have to make dinner, as Uncle Steven is making us his famous (he says) baked ziti. I'm sure that there is a huge list of things I could be doing, but I am just as sure that I'm not going to do them. I am going to enjoy the time off, as I don't know when I'll get any more until my parents show up just before Christmas.

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.

Cleanliness is Next to Godliness

I'm nominating my brother and his wife for sainthood. They paid for a cleaning service to come clean my house yesterday. It is so nice to have an entirely clean house. And I didn't have to do it! It made me very happy for everything to be clean. Thanks, bro!



Our chaplain came to visit today. So we really had cleanliness next to godliness today. We had a nice visit. I had made cranberry orange bread the night before, so we had tea and fruit bread. Tim even came out and sat on the couch for awhile.



So, all in all, a pleasant interlude in the midst of all our trouble.

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.

Thank Goodness for Good Friends

Thank you, thank you, THANK YOU to everyone that has stepped forward to help out. To the Cub Scout parents who have stepped in to take over running Pack 85. To the friends that have sheltered my children at all hours. To the girlfriends that took me out drinking. To the family that have offered support in many different ways. Thank you for being there.

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."

Telemarketer Tango

The phone rang at 9:00am this morning. We were running late and I should have just let the answering machine get it. I was afraid it was one of the kid's friends calling to cancel a playdate, so I picked it up. It was a women from a cancer charity. Here is a brief synopsis of our call:

Cancer Charity (CC): I am sure that there must be someone in your life who has been touched by cancer.

Me: As a matter of fact, my husband's leukemia has relapsed and we are on our way to the hospital right now for chemotherapy.

CC: Oh, I'm sorry. Well, then you know the importance...

Me: Are you trying to ask me for money?

CC: No, what we are asking you to do is mail fifteen letters...

Me: You're kidding, right? Do you have any idea what I'm going through right now? Do you know how much I have to do?

I was absolutely flabbergasted that this women insisted on sticking to her telemarketing script after I told her I was taking my husband for chemotherapy that morning! There should be a note that says if you're calling for a cancer charity and the person on the other end of the phone says that someone in the household is currently fighting cancer, express your best wishes and hang up!

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.

Ommaya, Take Two

Thursday morning we got the bad news that the Ommaya was not located in the proper spot. So Tim was scheduled for a second surgery to reinstall the Ommaya. Unfortunately, they made this decision before Tim had breakfast. This meant that he didn't get breakfast, since they told us that he could be going into surgery as early as 3pm on Thursday, November 6. Tim was not a happy camper. Yesterday, he missed lunch and dinner because the Ommaya surgery wasn't completed until after the hospital kitchen closed for the night. He did have a cold turkey sandwich at 9PM, but that just doesn't satisfay if you haven't eaten all day.

This time the surgery was successful. And Tim was back in his hospital room before the kitchen closed for the night. But by that point, he'd been given a lot of medication on a very empty stomach. This made him too nauseous to eat dinner. Just one of life's little injustices in leukemia land.

Go to Jail, Go Directly to Jail

On November 5, we went to Kellogg for what was supposed to be a short (by chemotherapy standards) visit. When Tim goes for treatment, the first step is always a blood draw. When you have leukemia, the complete blood count (CBC) can determine the course of your treatment and your life. Tim's CBC was not good. His platelet count had dropped below 90. This was a major concern. It seemed to indicate that not only was the leukemia in Tim's central nervous system, but that it had returned to his circulating blood as well.

Dr. G. contacted the neurosurgeon, Dr. C. They decided that Tim should have the Ommaya inserted that day, before his platelet counts dropped to a level that made surgery dangerous. So for the third time in four years, we went to the hospital one morning and I was the only one that went home.

Tim was admitted to Evanston Hospital on Wednesday afternoon. We returned to 5 Searle South, the same floor where Tim had already spent more than nine weeks as an inpatient. The only good thing about being a frequent visitor was that the staff already knows us and we know them. It is very comforting to have nurses and PCTs (patient care technicians) that know both of us. We are very grateful to all of the hospital staff for their care and their good wishes.

We are also grateful to our good friend Beata, who dropped what she was doing to come stay with the boys on Wednesday. She fed them dinner and stayed with them late that night and the next while I was at the hospital.

People always ask, "How to do manage?" The answer is: we manage because we have a lot of friends. Thank you, everyone, for all your help, no matter how small. I will write more about how to help in a later post.

Spinal Headaches

It turns out that if you have two spinal taps in three days and have over 10 ml of spinal fluid removed, you are subject to spinal headaches. Tim had four days of spinal headaches to endure after the Halloween treatment. He was a trooper, though. In spite of his spinal headache, he took Brendan Trick-or-Treating on Friday night. He acted as a Boy Scout merit badge counsellor for Theo's scout troop on Saturday. Then he gave up and spent Sunday and Monday on the couch pushing the fluids (the only cure for spinal headaches other than time.)

Tuesday was election day. Tim took the morning off to vote (yeah Obama!) He had planned to go into work Tuesday afternoon, but his headache came back while we were at the polling place. So it was back to the couch. Tuesday was a beautiful day, sunny and seventy. In November. In Chicago! So I took advantage of the weather to rake the leaves. Tim got off the couch long enough to teach me how to mow the lawn.

It was a great relief to get the yard cleaned up. One of the hard things about fighting an illness is the loss of control. You can plan to mow the yard, but treatment or it's side effects can totally derail those plans. I am always perpetually behind on the simple household chores like housecleaning, laundry, yard work, paying the bills, etc. That does nothing for my stress levels. The first year Tim had leukemia, he got very sick before mowing the lawn. At least this time, I wouldn't have that problem.

Trick or Treat at Kellogg Cancer Care Center

Tim's oncologist, Dr. G., isn't one to let grass grow under his patients. He had us come in the very next day (October 31) to begin treatment. At this point, all we knew was that Tim had leukemia cells in his spinal fluid. While leukemia is a cancer of the blood, it sometimes happens that the cancer cells will cross the blood-brain barrier and take up residence in the central nervous system.

Treatment for a CNS relapse, as it is called, is intrathecal chemotherapy. That means having chemotherapy injected directly into the spinal fluid. This can be done one of two ways. The first involves doing a lumber puncture and injecting the chemotherapy into the base of the spine. The patient then lays on his back with his head below his feet to encourage the drugs to spread evenly throughout the spinal fluid. This is what Tim had done on Halloween.

The second method for intrathecal chemotherapy is to insert an Ommaya reservoir under the scalp and inject the chemotherapy into the reservoir. An Ommaya reservoir (named for Dr. Ommaya, the inventor), is a plastic pouch attached to a catheter. The catheter is threaded into the ventricles (spaces) in the brain through a small hole in the skull. The reservoir sits just under the scalp and is full of the patient's spinal fluid. The oncologist can both inject chemotherapy into the Ommaya and withdraw spinal fluid for analysis.

When we left on Halloween, Tim had an appointment to meet a neurosurgeon to discuss installation of an Ommaya reservoir. We also had an appointment for November 5 for a third lumbar puncture and a second intrathecal chemotherapy treatment.

How We Found Ourselves Back in Leukemia Land

Tim began experience nerve pain in his face in August of 2008. This was not unusual because Tim suffered from shingles in October 2007. The shingles affected his eye and resulted in a cornea transplant in June 2008. So tingling facial nerves are a part of his daily life. But this new pain was not controlled by his medications.

We visited a neurologist in September. The neurologist ordered a brain MRI, a cervical spine MRI, a glucose tolerance test and a lumbar puncture (spinal tap). The first three tests all came back negative, which just left the lumbar puncture. Tim had the lumbar puncture on October 29. On October 30, Tim got a phone call from his oncologist telling us that leukemia cells had been found in the spinal fluid. And just like that, we were back in leukemia land.

A Brief History of Prior Trips to Leukemia Land

Tim was originally diagnosed with Acute Promylocytic Leukemia (APL) on October 21, 2005. He was treated with a combination of all-trans retinoic acid and danorubicin. His condition was so acute at diagnosis that he was immediately hospitalized. Tim spent about three weeks in the hospital, coming home just before Thanksgiving in 2005. He received outpatient chemotherapy in December 2005 and January 2006, returning to work in late February 2006.

Tim relapsed late in October 2006. He was once again hospitalized for three weeks due to the severity of his condition. Treatment for relasped APL is daily arsenic therapy. Tim needed 50 doses of arsenic to send his leukemia into remission. The final part of his treatment was an autologous stem cell transplant. The transplant, in which Tim received his own stem cells back after massive chemotherapy, occurred in April 2007. The transplant meant another three week stay in the hospital.

The stem cell transplant was supposed to be the end of our trip to leukemia land. Unfortunately, that was not to be.

Welcome to our Life in Leukemia Land

Welcome to Round 3 with Acute Promylocytic Leukemia. Round 1 was October 2005 through February 2006. Round 2 was October 2006 through May 2007 and ended with an autologous stem cell transplant. Round 3 began on October 30, 2008. This round will end with an allogenic stem cell transplant in 2009.

In the past, we have communicated with friends and family via email. This time we're going to try using this blog to keep everyone up to date on Tim's progress. This is the first venture into the blogosphere for both of us, so please be patient with us as we work out the kinks.