The Race

You’re standing at the starting line, with a number pinned to your shirt and a tracking chip laced to your shoe. Dozens, maybe hundreds of fellow competitors stand waiting, trying to keep their muscles loose until it begins. Looking around, you see that the looks of determination on their faces match your own resolve to run a good race and make the best finish possible. Some want nothing less than to win; others seek only to establish a new personal best time.

The murmur is silenced as the starter makes the announcement. He raises his arm, gripping the starter’s pistol. Everyone tenses momentarily; then comes the crack of the pistol, and everyone takes off.

A group of runners takes off quickly, setting the pace for the others, opening a gap between them and the rest of the field. You are in the middle of the pack, comfortably keeping up with the pace they’ve set. It is fast, too fast to maintain for a long distance, but that’s okay since…

The blood suddenly drains from your face as the realization washes over you. “I have no idea how long the race is.” If you maintain this pace you will fade quickly and be spent if the race runs longer than you guess. On the other hand, if you fall back and adopt a slower pace you’ll be left behind by the first group and will be nowhere near the front if the race ends sooner than you predict.

What do you do?

This is the dilemma which has faced me for much of the last five months. We can’t predict the arc of Darcy’s illness and recovery. It could be several years before she makes a complete recovery, and there could be many bumps in the road ahead. There have been at least a half dozen times during the last few months when I wasn’t sure what was going to happen, and the downside was so frightening it was hard to even contemplate. At many of these times we were warned by the doctors that the treatment Darcy was about to receive could have dire, perhaps even fatal consequences. While the chances of such a tragic outcome were not likely, they were significant.

The Sturm und Drang of the situation stems from the fact that the number of days I am allowed to take off work are limited. I would stay with Darcy every day until she was fully recovered if I could, but the Family and Medical Leave Act allows for taking up to twelve weeks of unpaid time off to care for a family member. In addition, I had a few weeks of vacation and personal time accrued. But all of the time off is limited; at some point I will reach the end of it.

The dilemma is very similar to the runner who starts a race without knowing how long the race is. If I use up too many days early on and Darcy’s situation requires that I take even more time off, what do I do? Or what if I’d chosen to work in order to save those days for later, and she had developed an infection that turned out to be fatal? Those days I saved wouldn’t have meant much to me then, would they? While it is terrifying to consider the latter possibility, it is a reality that I think had to be confronted.

As it stands today, things look pretty good. We are very optimistic that Darcy will make a full recovery; today’s news about the bone marrow biopsy is especially encouraging. Dr Levine tells us that she is doing very well, and that hopefully the hiccups of the last few weeks are behind us, never to return. I expect there will be setbacks in the months and years ahead, as there usually are a few. I don’t believe that ignoring reality and calling it optimism is a healthy outlook, but I think that we can be simultaneously realistic and optimistic, expecting good things to happen while preparing ourselves to deal with the consequences if bad things should occur instead.

So while we celebrate today’s great news, we recognize that the road ahead is long. Our race feels more like a 25k than a quarter mile, and so we will adjust our pace accordingly. We need your prayers more than ever, and will need help with care while Darcy is here in Ann Arbor and after she returns home too. I am returning home next week to go back to work, and look forward to finally eating some of the tasty dishes that have been left in our freezer. We both look forward to being able to see friends more often, to return to church each Sunday (and especially for our presence to not be a novelty), to eat at some of our favorite places back home (or at least takeout), and to a life once again normal.

To your marks…set….go!

On Track

Darcy had an appointment at the Cancer clinic today, and we got the results of last week’s bone marrow biopsy, among other things. There are a pair of important facts that we now know about Darcy’s bone marrow: there are no leukemia cells present (at least that they can detect), and the bone marrow cells are entirely donor cells. This is exactly what we wanted to hear!

It will still be at least a month before Darcy can come home to Sparta, but barring any unforeseen setbacks she could be home in early February. That is great news!

Ann Arbor Caregivers Needed for January

Hi everyone! With the holidays winding down, we are gearing up to ensure we have caregivers lined up for Darcy in Ann Arbor. We are covered through noon next Tuesday, but have the rest of the week wide open and most of January.

To assist in keeping track of the needs and volunteers, we have found a great website to use.  To volunteer or to see what other needs there are, please click on this link: http://www.lotsahelpinghands.com/c/619245/ and request “to be a new member.” There is a calendar that details by day what help is needed. All you have to do is click on the item that you would like to help out with and it will put you in contact with the “Coordinator” for that item. 

Thank you for your continued help and support for the Sullivan’s. Feel free to contact me should you have any questions, dpostma@aol.com or 616.866.5889.

Dana Postma

I’ll Be Home For Christmas…

This afternoon around 2:30 Darcy and I walked out of the hospital together. It felt really good; she seems to feel better than she has in several weeks, and it was really good having her around here for Christmas Eve.

It was quite a busy day after we got home. Jill and Dana were here visiting, and met us at the apartment after getting lunch. the ladies sat and visited while I chatted on the phone with a couple of different friends. After they left I needed to go and run some errands- to the pharmacy before they closed, to Whole Foods Market for some snacks, to Blockbuster to get the night’s entertainment (Connor was by this time making small noises about how lllloooooonnnnnngggggg it would be until morning when we open presents) all before everything closed for the holiday.

Apparently I was not the only person to leave some things until the last minute. Whole Foods was packed, but we got some tasty, healthy snacks (and a few not so healthy but oh-so-tasty ones) and found some movies that suited us. Around 8:00, long after most of the grocery stores had closed, I realized to my dismay that I didn’t have everything I needed for what I planned to make for dinner tomorrow. My recipe for Tater Tot casserole calls for hamburger, mushroom soup, green beans, cheese and…oh yeah, tater tots. I had everything on the list except the ingredient hidden in the title. So I left again in search of frozen processed potatoes. I found a grocery that was miraculously still open, but was a little nonplussed when I discovered it was an organic grocery store. It turns out that people who eat organic food don’t eat a lot of tater tots, judging by the supply in the freezer section. I did find a small bag of “Spud Puppies” which the bag proudly informed me are “made from organic potatoes.” So dinner is on for tomorrow after all. No baloney and chips on Christmas!

While Darcy, Connor and I watched one of the Ice Age movies, I started Darcy’s IV (the only one of the three she lad left to do at home) and put together her supply of pills for the week. We are very happy to be “home” at the apartment, all three of us together for the weekend.

All reports from the doctors are positive. Tuesday’s bone marrow biopsy showed no signs at all of leukemia. The detailed report showing a picture of her marrow in great depth won’t be ready until next week when we go to clinic, but we are pleased with where she’s at in her recovery right now. The recent setbacks she has experienced are fairly common, and as long as they don’t get out of hand are nothing to worry about. Of course it’s much easier to say that now, with Darcy sleeping in the next room, than it was when she was being admitted to the hospital with a high fever of unknown origin, or an unspecified heart ailment, and they were running a battery of tests to find out how to treat her.

We pray that she is “home” for some time now, with trips to the clinic her only contact with the medical-industrial complex. I can say with all honesty that she seems to feel better in the last two days than she has since we came to Ann Arbor seven weeks ago today. I hope she feels twice as good next week as she does today.

Thanks to all of our friends who have sent Christmas cards to us; we treasure them all. We have them hung on the walls of the apartment, and it lends a very warm ambience to the place. Thanks also to those who have lent us aid and assistance in terms of money, watching Connor (or letting him come and play with a friend for the day), cleaned our house, cooked a meal for us, organized my garage (a Herculean task if ever there was one), stayed with Darcy and taken care of her, or any of a hundred other things that I’ve failed to mention. I’d mention people by name, but I know I’d leave out somebody whose contribution has been urgently needed and enormously appreciated, and I don’t want to risk offending anyone. You know who you are, and so do we, and we thank God daily for all the things you’ve done to help make our road a little easier. I don’t know what we’d have done without all our friends who have come alongside us for various legs of the journey and shared our burden. Our love and gratitude go out to you on this Christmas, one of the most precious I’ve experienced in my life.

It’s 11:55, and Santa wil soon be stopping by. I’d better get to bed, because we all know that Santa might not stop if people are still awake. Merry Christmas to all, and to all a good night!

Not Today, But Tomorrow

As we held our breath today, waiting for the “all clear” and the nod from the doctors for Darcy to go home, the clock ran out. They ordered the PICC line in the morning, the blood cultures having behaved themselves overnight, and were told that the department that handles such things was very busy, and might not get to it today.

They did install it in the afternoon, but the subsequent x-ray to confirm its proper placement showed it to be too short to reach the intended site in the artery near her heart. It would have to be re-placed, which did not happen until it was too late for the doctors to discharge her today. At around 5:30 a technician arrived at the room and pulled it part way out of her arm, then reinserted it in the correct vessel. X-rays verified its correct position, and through it they administered the evening dose of Vancomycin.

Tomorrow morning they will get the orders put in the system, go over the list of discharge instructions and we will leave the hospital for what is hopefully the last time for a while (except for the blood draws and clinic visits which begin on Saturday). But those are different, because they are outpatient, and the two are worlds apart, especially after having spent seventeen of the last twenty weeks in the hospital.

As trying as it has been, in some ways this Christmas season has been one of the most enjoyable in recent memory. I think that the events of the last five months have placed things in perspective for me, as only the loss of a cherished brother (in law) and the threat to Darcy’s health can do. While I try not to take loved ones for granted, such a mistake will be easier to avoid this year than before.

We hope and pray that by tomorrow afternoon and evening our biggest problem will be trying to convince Connor of the value in waiting to open presents until Christmas morning.

Tuesday Update

The last two days and tomorrow have been, and will be, busy days.  It has been eventful in a medical sense, though busy is of course a relative term. Darcy hasn’t been frantically running from one appointment to the next, but the way things have been going, if we can get one big thing accomplished per day that’s a big day.

Yesterday afternoon they removed Darcy’s Neostar port from her chest. It had become infected for the second time in as many weeks, and antibiotics hadn’t taken it down as they’d hoped. So over the weekend they decided to remove it, and replace it with a PICC line after the infection has disappeared. She has been on antibiotics since Saturday morning, and if the blood cultures remain negative tomorrow they will put in a PICC line. If all goes well she should be able to come home tomorrow afternoon/evening.

This afternoon they performed Darcy’s bone marrow biopsy. This time they had the more experienced hands on deck- Dr. Mineishi (the clinical director of the transplant program) was in the room the entire time, and assisted with part of the procedure. No word on when those results will be in, but hopefully tomorrow. In any event, there is a (good ?) chance that we will get to spend Christmas together at the apartment.

Another Setback-Monday AM

The doctors visited Darcy this morning and told her that the infection in her Neostar port is more stubborn than they first realized, and the port will have to be removed. They are moving her back up to the BMT unit today, which is an indication that they are feeling more comfortable with the heart arrhythmia. We haven’t heard  what they plan to do about that, if anything. It is quite possible that it isn’t anything to be concerned about, or that it can be controlled with medication.

The biggest downside to all of this is that Darcy has to be in the hospital until at least Wednesday. The doctor told her that she would try everything to get her discharged by then, but that she couldn’t promise she’d be home by Christmas. This isn’t what Darcy wanted to hear. (Me neither.) But we’ll deal with that when the time comes. For now, we’re hoping she is back to the apartment on Wednesday. (Darcy has secretly been hoping to get permission to make a quick trip back to Sparta to attend the Christmas Eve service at our church, but that obviously won’t work out.)

As you are praying, please pray that she be able to be out of the hospital for Christmas. That would be so much better for her spirits, which are starting to weaken. It just seems like every time something goes right, something else pops up that cancels it out. I know that’s the way these things go, but we could sure use a break from that for a while.

Saturday Morning Update

Doctor Peres just made rounds and informed Darcy that she has another bacterial infection that has to be treated with antibiotics for a few days. This means that she will have to remain in the hospital until at least Monday. Bummer. At least they discovered it before she spiked a fever, so maybe it will be easier to treat. We were hoping to have a nice quiet weekend, just the three of us here at the apartment.

Oh well, maybe we’re getting all of this stuff out of the way early in the process, and maybe that means that things will soon start to go more smoothly. That is our hope and our prayer.

The Yo-Yo Effect

Sometimes when things just start to look up, something happens and your course is quickly reversed. What you thought was going to happen doesn’t, and what you least expected suddenly materializes.

On Wednesday, Darcy came home from the hospital, as you know. On Friday morning we went back in to the clinic for routine monitoring. Darcy had been feeling some pain in her chest overnight, though not chest pains in the sense that we normally think of them. Rather, it felt more like sore muscles from over-exertion. The doctor didn’t think it was anything to be alarmed about, but ordered an EKG just to make sure.

I knew as soon as the tech came back in and printed a second, and then a third sheet from the EKG, that they were concerned about something. Many hours later, after spending the afternoon and evening in the ER (along with Kerrie, who drove over to spell me while I went to Connor’s Christmas party at school- Thanks again Kerrie!) they told us that there seem to be two separate, unrelated problems. The pain she was feeling is most likely from inflammation of the sac surrounding the heart, nothing serious. The other thing is something called Wolff-Parkinson-White syndrome, a heart arrhythmia that can cause palpitations, or rarely more serious complications. They admitted her for observation overnight, and will be checked out by the cardiac team this morning. They will then caucus with the bone marrow transplant (BMT) team to determine if they need to do anything, and if so, what to do. This doesn’t seem- at this point at least- to be a major problem. The doctor we saw last night from the BMT team said that he had been researching this to try to find a link to any of the medications, treatments, or to the transplant itself, and could find no evidence of any kind of link.

So it would appear that the heart arrhythmia is coincidental to everything else, not something that arose as a consequence of the leukemia and its treatment. We’ll know more on Saturday, after they have time to analyze the situation more fully.

I told Darcy last night that it seems every time I try to leave Ann Arbor, something happens to pull me back here like a yo-yo. If it happens one more time, I told her, I’m going to stay in Ann Arbor until she can leave with me, no matter how long that may be.

I’m planning to go back to Sparta on Sunday, to work on Monday through Wednesday. We’ll see how that works out.

There’s No Place Like Home

Even if it isn’t really home, it’s a whole lot better than the hospital. Darcy was able to come home to the apartment last night, after a long day of uncertainty, not so much about Darcy’s health but rather where she would go if she did leave the hospital.

Yesterday morning I awoke in the apartment to find water dripping from the ceiling in the bathroom. I called the apartment office and they sent the maintenance men over right away. After several hours of working to try to isolate the source of the leak (and tearing out half the ceiling in the process), they thought they had it fixed- the caulk around the tub upstairs had come apart. But then the doctors caught wind of the situation and began fretting about whether the apartment presented any health risks for her, in terms of exposure to mold, mildew, bacteria, etc.

Eventually, through the efforts of the social worker and the apartment management they were able to find an available apartment for us to stay in while our apartment was being repaired. This satisfied the doctors, who said she could go home, and we left the hospital at about 7:00. When we got to the apartment we found the lights in a “brown-out” situation, with barely enough light to see to get around. None of the appliances would work due to the lack of power, and the heat is also electric- and it was already 14° outside. The “new” apartment was cold since the heat was turned down already, and we had no assurance that the power would return before morning.

So we decided to return to “our” apartment and wait it out. Angie and I checked out the bathroom and neither of us could see anything that looked or smelled moldy, musty, or otherwise threatening. The three of us sat in the candlelight (since we soon lost all power) and talked about this and that, until the power finally came back on around 11:00.

This morning the leak was worse, and they discovered that the tub in the apartment upstairs had a broken valve that had gotten worse over the last few days. After it was replaced, no more leaks. They will repair the ceiling tomorrow.

Darcy and I took the opportunity to go out and run a few errands this afternoon. It was good for her to get out and see something other than the apartment, the hospital, or the road in between. She is supposed to walk as much as she can for exercise, and she got a good workout. We had a lot of fun, enjoying each other’s company in a more normal environment than the last couple of weeks. She is feeling better- not tons better, but better nevertheless- and looks forward to days when she truly feels good again. It may be a while, or it may happen sooner than we think. I’m sure there will be ups and downs of course, but after several weeks of just really feeling like crap, it’s nice to see her heading in the right direction.

Tomorrow morning she has appointments at the UM clinic, and they will re-do the bone marrow biopsy from last week. Let’s hope they get a good specimen that tells them the news that we want to hear. That would be a wonderful Christmas present, and all I really want.