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.

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.

More Christmas Elves

Many thanks to all the children at the Sheil School of Religion. They made Tim a couple of great big get well cards. They also made a very, very, VERY long red and green paper chain. We have hung the chain in our living room. It makes a great Christmas decoration. Thank You! We also thank the parents of the Sheil School of Religion for their very generous assistance.

My Christmas Elves

Tim's sister Amy has been with us since Tuesday. She has taken Julie's place as chief cook and bottle washer. Yesterday, Tim's brother Steven joined us. Today I took advantage of all the help and rearranged the living room and dining room to make space for the Christmas tree. We brought up the train track and Steven got the train running while Tim and I were at the hospital this afternoon. I'll put out the Christmas village this weekend and we'll trim the tree. Many thanks to Steve and Amy for being so much help and such willing workers.

Treatment Schedule Update

I've had a couple of folks ask about Tim's treatment schedule, so I'll just post a brief update. Tim gets an infusion (IV) of arsenic Monday through Friday. He is scheduled to have a total of 25 doses. Today's dose was number twenty. After the 25 doses, he gets two weeks off followed by another 25 doses of arsenic. Then he'll have the stem cell transplant. This all assumes that the weekly blood tests and the bone marrow biopsy scheduled for January 2 don't cause the doctors to change the treatment plan.

Tim is also receiving methotrexate injections to treat the cancer in his spinal fluid. These injections give him very bad headaches and make him nauseous. We have found a combination of medications that make the symptoms less severe, but Tim still hates methotrexate days. He was receiving methotrexate twice a week. We have cut back to once a week and anticipate cutting back to every other week soon. Tim is scheduled to have a lumbar MRI on Monday to make sure that the cancer hasn't don't any additional damage to his spinal cord.

Overall, Tim is feeling a little better than he was around Thanksgiving. That makes things both better and worse. He is not in as much pain, which makes everyone feel better. However, he is now alert enough to think about how awful this is. We describe it as feeling better medically but not mentally.

A Houseful of Help

We have had Tim's sister Julie with us since Wednesday. She's been a good sport about doing the dishes and the laundry and the kid wrangling. We also had Tim's sister Joyce and her husband Dave with us this weekend. Joyce, Dave, Julie and the kids took the train downtown to the Christkindlemart on Saturday. Today Joyce and Dave braved single digit windchill to take the boys sledding. (Julie declined the offer to go sledding.) Joyce, Dave and Julie also got a little Christmas shopping in at the mall this afternoon, which gave Tim and I some space to ourselves. Our house was beginning to feel very small with so many extra people in it.

Tim's new drug routine seems to be doing a good job of managing his side effects. He was able to get to church this morning with Joyce and Dave. Being able to attend mass with our community meant a lot to both of us. Thanks, Joyce, Dave and Julie, for making that possible.

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.

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!

Monday, Monday

We had our usual messed up Monday. I say messed up because our personal schedule gets messed up on Monday. On Mondays, we try to leave for the hospital at noon, because Tim has to have an EKG before they will start the arsenic for the week. Arsenic can do bad things to your heart rhythms, so the EKG makes sure that it's safe to give Tim more arsenic. Leaving the house at noon means that lunch time gets moved around. Tim's food schedule is very important, because a lot of his medication needs to be taken with food. Today we didn't finish lunch before we left. We got behind on some medication and as a result, Tim had a pretty poor afternoon. The EKG was normal, Tim had his arsenic, the rest of his blood tests came back pretty decent, so he didn't need any extra medication. We had another consult with the pain doctor. Now if I can just get Tim to eat something tonight, things may start to look up.