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.

Happy Feet

The psychologist at the cancer center likes to remind care givers of the importance of "me time" for the care giver. Today I had the opportunity for a little of that. Tim got started with his chemotherapy and clearly planned on napping through it. For a change, I didn't need to see the oncologist or the palliative care specialist or anybody else. So I went into downtown Evanston for a little retail therapy. This summer I discovered Earth brand shoes. They have a negative heel. That means your toes are higher than your heel. It is supposed to stretch out the tendons in the back of your legs and improve your posture. All I know is that I love these shoes. Unfortunately, the pair of sandals I bought this summer weren't going to get me through a Chicago winter. Equally unfortunately, the only styles in the stores this fall were ones that just didn't appeal to me. They were all ballet flats and Mary Janes. Just not my style at all. But today they finally had something that I liked. In fact, they had two somethings. I bought a pair of boots and a pair of shoes that look like tennis shoes but are really slip on shoes with ultra-lightweight microfiber uppers. My feet are so happy!

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.

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.

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.

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.

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!

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.

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.