Just When You Think You're Out of the Woods...

Our schedule got a little off today because Mike had his radiation treatment later than normal. Since he didn’t finish his breakfast until after noon, I didn’t wake him up to feed him until 3:20. Mike had that “look” in his eyes again that he gets when his brain swells. I asked him some questions and got the wrong answers. (Did you know that I work at Lexington Medical Center? Maybe I shouldn’t discount his answer on that one—I probably should be receiving a paycheck from this place!) Of course, I immediately called for the doctor…I didn’t want to wait it out and have to deal with the on-call doctor again over the weekend. The doctor ordered an immediate dose of Mannitol—Mike was given that to aid with the swelling on Sunday, and it seemed to help. The doctor said that all of the radiation can cause swelling, so since it’s the end of the week and Mike has had five consecutive treatments, that may be the cause of the problem. If I don’t see a noticeable change by tomorrow morning, another CT scan is going to be done. I’ll write a brief post tomorrow to let you know how he’s doing.

Mike’s platelet count is still fine, and all other blood work has come back okay. As usual, there will be no radiation over the weekend, but he will continue with the chemotherapy. He is starting to lose a good bit of hair…there’s more and more of it on his pillow. It’s almost getting as bad as woman’s after having a baby. (Those of you who have given birth know what I’m talking about. Sometimes I wonder how I have any hair on my head with all the strands I shed!) He’s not close to being Kojak yet, but he is getting closer to a Dr. Phil look.

My girlfriend is reprimanding me for not putting up another post about the Mike bracelets (or POP—Power of Prayer—bracelets as my father has renamed them!). I’m not going to mention any names, but hers rhymes with malison. So…if you would like a bracelet, just send a self-addressed stamped envelope to the address at the bottom of this thread. For those of you new to this blog, the bracelets are meant to serve as a little reminder to think of and pray for Mike throughout the day. It is prayer that has gotten us this far. I crocheted all of the bracelets myself during my extended stay at the hospital. (See the February thread entitled “Mike Bracelets” for more details on how the bracelet idea came about.) For you Richland Northeast folks (both faculty and students), you can just swing by Mrs. Bush’s room if you want one. She’s in room C-204, but heed this warning: class time is sacred for her, so I suggest you stop by during lunch if you want one. Interrupting class would not be a good idea. Anyone at Airport can get one from Mrs. Klein. For everyone else, here’s the address:

Mike Bracelet
600 Woodrow Street
Unit G
Columbia, SC 29205

Brief Update

Mike seems to finally be bouncing back from the swelling he had over the weekend. Late yesterday he started talking more, and he continued with that today. He’s been having a pretty strong voice when he talks as well; the whispers are fewer and fewer. There have been plenty of smarty-pants remarks spewing from his mouth, so you know he’s definitely doing better. Of course, if he’s gets too smart with me, I threaten to not feed him his next meal, so he straightens up rather quickly. The prospect of starvation is a pretty good motivator.

We had a slight scare this morning. The blood report indicated that Mike’s platelet count dropped dramatically from two days ago. The doctor suspected it was a mistake by the path department and ordered another test today. Luckily, everything is normal. If it had been too high, the doctor was not going to give him the chemotherapy today. He has this test done every other day, so it is monitored regularly. The radiation continues to go well; he had his twelfth treatment today. Thirty more to go.

Some of you have asked about visiting Mike, and that is perfectly fine. There really is no predictor of a good time to stop by—it’s kind of a take-your-chances sort of thing. Sometimes he’s up and talking and other times he’s a sleepy head. He doesn’t have a pattern he follows, so I can’t tell you that one particular part of the day is better than another. If you do visit, be aware that he is still not back to regular Mike, but he does know who comes by and appreciates the visits.

Our oncologist sent a copy of the CT scan to Duke, but he has not talked to the doctors up there about the Avastin yet. He hopes to talk with them by early next week.

That’s about it. Sorry I don’t have anything more exciting to write, but at least there haven’t been any setbacks in the last couple of days!

Prayers Are Working (As If We Didn't Already Know That!)

In case you’re wondering, the on-call doctor never came by Saturday night. Good thing I have that street-smart medical degree, eh? After Mike still appeared not to be improving Saturday evening, I insisted the nurse call the on-call doctor to see if his steroids needed to be increased some more. After the nurse talked with the doctor, Mike was given five more milligrams on the spot then his regular dose was increased to 20mg. When the on-call doctor did come by on Sunday for rounds, I shared my concerns that Mike has not been following textbook protocol as far as how quickly he can decline. The doctor ordered a drug called Mannitol, another agent to help with the swelling. He also ordered a CT scan and MRI to check for hemorrhaging. They don’t do MRI’s on Sundays, so that’s why he was having the CT Scan—they do do those on the weekends in the emergency room. Mike continued to give some crazy answers to questions throughout the day, but he got better as the day progressed.

This morning I talked with our regular oncologist. He is going to keep Mike on the high steroids dose until the radiation treatment is finished next month. Based on the CT scan results, Mike is NOT going to have an MRI today. The scan is compared to the last one he had here on January 9. The bleeding Mike was having in the biopsy area in January has “nearly completely resolved” and there is “no new intratumoral hemorrhage.” That is great news because Mike did have additional bleeding while we were at Duke, so there evidently is no sign of the hemorrhaging Mike was having earlier this month. (If you remember, on February 5, I was told the tumor had grown, Mike was hemorrhaging and there was nothing else the doctors could do…it would just be a matter of days.) Our doctor is going to send the report to Duke to see what they think about starting the Avastin. Also on the great news front…Mike’s February 11 MRI showed Mike’s tumor had a diameter of 5.6 centimeters. Yesterday’s scan showed the diameter at 5 centimeters. I’m no rocket scientist, but that tells me the tumor has shrunk six millimeters since Mike began radiation and chemotherapy nearly two weeks ago! Keep the prayers a goin’...5 centimeters is still bigger than the tumor was when Mike first went to the hospital in January, so we’ve still got a long way to go. I am, though, extremely encouraged by how well this current treatment is working.

Saturday Swelling

It appears that Mike’s brain has started swelling again. I suspected it was last night when he wouldn’t respond to simple questions that just required him to make a choice. (i.e. “Do you want to eat the pudding or not?”) The nurse assured me it was just because he had a double dose of morphine that day, so he was exceptionally tired.

When I came in this morning, he was talking pretty well; he was given some morphine around 11:30 and fell asleep shortly thereafter. I woke him up at 2:20 to eat lunch and could tell he was not right. Both of his eyes were not focused straight ahead, and he couldn’t answer some simple questions. He knew what year it was and my name, but he answered “2008” for a few other questions as well; this is something he did before when he was having some swelling occur. (Your vocabulary lesson for the day…that is called perseverating—repeating the same thing over and over.) I called the front desk and asked for a nurse to come to the room. After more questions and incorrect answers (Did you know we have 10 children?), I called the front desk again and told them to go ahead to page the doctor because I knew we would need some more steroids. After 19 minutes passed and no drugs had been administered, I was giving them two more minutes until I was going to have to get a little ugly. And you wouldn’t like me when I’m angry. (Can you name that television show?!?) Luckily, the nurse came by and said the doctor on call (not our regular oncologist) was on his way to the hospital and was going to come to our room first when he arrived. I really didn’t want to get nasty, but after seeing how rapidly Mike declined when we were at Duke that first day, I decided I would never let trying to be nice win out over what I think was needed medically. A short while later, the nurse came in to give Mike 4mg of steroids and said the on-call doctor ordered for him to go back to the increased dosage he was on earlier, though she’s not sure if that’s 15mg or 20mg.

Mike was able to sit up and talk after he ate lunch. There were some visitors in the room and he would make comments every now and then. After all the visitors left, I began to do another neuro check on Mike. (I do think I have this medical skill down pat!) He was still giving crazy answers to questions, but his responses were providing a little comic relief. I asked him his profession, and he told me he was a scavenger. When I asked what he scavenged, he said, "Women." Did you know that the state pays for such things? Mike is now sleeping, and I am still—nearly three hours later—waiting for the on-call doctor to stop by the room to talk with him about everything. I guess maybe he went to the beach for the day so that’s the cause for the delay in his arrival? I’ll let you know if anything else major happens.

Still Doing Pretty Well

After what I did for Mike yesterday, I think I’m going to have to officially toss my name in the hat for the Wife of the Year award. I flossed his teeth. I now have a new-found respect for dental hygienists. I guess flossing sets the stage for an overall good day because Mike had a pretty good one yesterday. Mike’s head control is getting better, though it’s far from being perfect. For the past couple of days I’ve been making him turn his head to reach the food as I’m feeding him. So, if he wants to chow down, he has to turn his head towards me, and y’all all know he’s not going to say the heck with eating! It apparently is helping because the physical therapist commented on how much better his head is moving. Please pray for Mike to continue to get better with his body movements. With as much assistance as he has to have now, I don’t see how he’ll be getting around on his own anytime in the near future. I know he’d feel a whole lot better if he could move around and stretch more. He did sit upright in his bed yesterday from about 2:30 until 9:00; he was awake the entire time. (By upright I mean the bed was set at a 90 degree angle.) His voice comes and goes, but when he’s awake, he knows what is being said. The doctor went ahead and lowered his dose of steroids to 10mg four times a day since he seems not to be having any swelling.

Mike didn’t go to his radiation treatment today as early as he usually does, so that threw off our schedule for the day. I had a great system going with Mike’s meals, and it all went awry. The radiation folks came by to pick him up at the usual time, but the doctor had not seen Mike yet, so they didn’t want to take him. I figured they would swing back by within a half-hour, but it was almost two hours before they returned. That’s not a huge deal, but it makes it a little difficult to order meals when I don’t know when he’s going to be out of the room. I don’t want to order something then have it get cold. Who wants icy grits and eggs? Eating a late breakfast then makes it difficult to coordinate lunch and dinner times around his chemotherapy. Mike cannot eat an hour before or two hours after his Temodar. That wouldn’t be a big deal if the hospital cafeteria operated like a cruise line and offered meals around the clock. But the chefs around here like to go home, so they close at 7:00—there is no 24 hour pizza bar. The late radiation treatment also caused Mike to miss out on physical therapy today. They came by at the normal time, but he was still downstairs for his radiation treatment. When the therapists returned later in the day, Mike had just started resting well; he felt bad earlier and was given some morphine.

I would like to give a shout out to the Richland Northeast Cavaliers. They had a dessert fundraiser today to help with our expenses and invited me and the girls to attend. Ava, Savannah, and I were delighted to go. I have never seen so many yummy desserts all in one place!!! (To you schools who need a fundraising event, this is a great idea—you just have folks pay five dollars and bring a dessert…then you can eat as much of the other desserts as you want.) It was great to visit my alma mater and see some of my old, I mean former, teachers. (And for you folks who don’t know me and Mike very well—Mike did not work at Northeast when I went to school there, so he wasn’t hitting on me when I was a young, impressionable teen.) Before I left, I was able to smuggle a sampler plate of the softer desserts for Mike. I gave them to him this afternoon when I returned to the hospital, and he loved them. I can't imagine why he would be so happy to have something other than hospital food. Mike and I are so fortunate that he works with such wonderful people. Thanks Cavs for all you have done for us!

Mike was pretty quiet this morning and when I returned to the hospital this afternoon. Hmmmm…I wonder if I need to floss his teeth again. Maybe it wouldn’t be as scary if I’d just do it every day.

And of course I would be remiss if I didn’t thank the rest of you as well for all you have been doing. Some of you may not think you’ve done anything, but if you’ve said a prayer, you’ve done plenty. I think we all realize the only reason Mike is doing so well is because God is hearing our prayers. Please continue to pray that the radiation and chemotherapy treatment will work well for Mike and for his physical therapy rehabilitation. One other prayer request—our girls have been a little sick, so they haven’t been to the hospital since early this week. I know Mike would like to see them, but with his immune system being lowered, we can’t risk them being up here unless they are well. Ava is a complete wild child when she’s on cold medicine, so that has to be used sparingly! Please pray for a speedy recovery for the girls, so they can see their daddy.

Wednesday News

We had a bit of a snafu today. The hospital suddenly blocked Blogger which meant I could not post anything new or read any of your comments. Fortunately, we’ve had an awesome nurse the last three days and she hooked me up with the tech folks, so all is well and good now. Actually, all of the nursing staff and our current doctors are great. The only problems we’ve ever had have been with the original neurosurgery practice, but we don’t have to deal with them anymore. That makes for a much happier Diane.

I didn’t post anything yesterday because there wasn’t a whole lot to write about. I can only stretch my wit so far when Mike isn’t giving me much to write about. I would hate for you all to be in search of a Cliff’s Notes version of the blog because it has become boring to read. So…if I don’t post, it’s just because there haven’t been any big changes. I will make sure I write a new post at least every other day or if anything major happens—good or bad. With all that being said (or written, actually), here’s an update on the last couple of days…

Mike slept a lot yesterday. I was beginning to think we were going to have a Rip Van Wrinkle on our hands. He practically slept through his radiation treatment—he was asleep before he went down there and shortly after it was finished. He woke up for breakfast and stayed alert really well until he became exhausted with the physical therapy. He sat up for about 33 minutes (this is always with assistance, by the way), moved some limbs independently, then was worn out and went back to sleep! That’s about all that happened yesterday, hence the reason there was no post.

I think today Mike has looked the best that I’ve seen him since we left for Duke. He’s been awake and alert for most of the day, though he had a few moments where he seemed quiet and out of it. A different physical therapist worked with him today, so she did things a little differently. Rather than having him sit on the edge of the bed for an extended period of time, she tried to make him sit by himself and move a little more on his own. He did a pretty good job, but he has quite a long way to go before he’s remotely close to moving around on his own regularly. But hey, from the wisdom of today’s feature on TLC’s Ten Years Younger, “Life is like a toaster. You have to be pushed down before you can pop up!” As I was feeding Mike lunch, he developed a really strong voice and the nurse could hear him in the hall; she was quite impressed—she had not heard him talk that well yet.

The doctor did start lowering Mike’s steroids on Monday. He was on 20mg four times a day (it was six when he was first admitted to ICU at Duke), and it is now at 15mg four times daily. As long as it doesn’t appear that his brain is doing some rebound swelling from the treatment, the dose should be lowered to 10mg by the end of the week. The goal is to get him down to 4 mg every six hours.

And forgive me for a having a “proud momma” moment…Ava had a little program at her preschool last night since the music teacher became sick right after Thanksgiving and they couldn’t do it at Christmas. As she went on stage she raised her arms in the air and said, “I’m up here, Mommy!” a few times so everyone could hear. I’m including a picture of us after her stage debut! For those of you not too into children, just take it as an opportunity to see a miniature Mike in a dress!

Mellow Monday

Nothing too revolutionary has happened over the last couple of days. Yesterday was a great day for Mike as far as talking goes. He had a voice the entire day, and just about everything he said could be understood. He was awake for most of the day as well. I think the best part of Mike’s Sunday may have been when his friend Fran brought him some cut-it-with-a-spoon cooked broccoli. Mike has been missing his double orders of the green stuff. We’re not allowed to order it off the hospital menu because sometimes it’s a little too hard, but the speech therapist said some could be brought in if it was soft. Mike was most pleased that there were leftovers, so he had some for lunch today as well. If he behaves, I may heat up some more for dinner.

Mike had his radiation this morning and did fine with it. The radiation oncologist saw him for the first time today since early last week and seemed pleasantly surprised that Mike is doing so well. I guess he wasn’t expecting Mike to know where he was or what year it is. I asked when the next MRI will be done and found out that won’t happen until after this treatment cycle. Mike’s last radiation treatment will be the day after Easter. The physical therapists came by today, and Mike sat up for 30 minutes. He didn’t keep up the trend of doubling his time, but since he didn’t have physical therapy over the weekend, I suppose I’ll cut him a little slack. Hmmm…I wonder if he was so generous on cutting that kind of slack with his former ball players? Mike has been quieter today and seems to be resting more than he did over the weekend. I’m figuring the radiation is causing him to be so tired…you know me and all of my medical expertise.

Mr. Popular

Mike had a lot of visitors today, and he was awake for most all of them; about 20 people dropped in throughout the day. He was pretty alert for the majority of the day and could talk a little with those who came for a while. We both appreciate you all stopping by. I think he was definitely the most popular patient on the floor! To those of you planning to come see Mike over the next several days, do be aware that while he is leaps and bounds better than he was in ICU at Duke, Mike is far from being his normal self. He can’t really talk a whole lot, but he definitely knows and remembers who comes to see him. If you talk to him, he does understand what you are saying, but he may not be able to respond very well.

Mike’s hair is starting to fall out from the radiation and chemotherapy. (Of course some of that is natural—I’ve been finding his hair all over the house for months. I guess now he just has an excuse for losing it!) The soon-to-be bald spots on his head from the radiation will be permanent. The hair loss caused by the chemotherapy will grow back. Oh, and Mike does take the Temodar on the weekends…he has to take that for 42 straight days.

This morning I read to Mike the comments that have been left on the blog over the last several days. Though he didn’t say a whole lot, I could tell he was touched by all of your words. After reading through many of the comments, I asked him if he wanted me to stop reading aloud and he said, “No.” Mike did want me to ask all of y’all to continue to pray for him. Though he doesn’t remember being at Duke, he does realize it is only because of prayer that he is still with us.

There hasn’t really been anything revolutionary today, but we haven’t had any setbacks either, so that’s good. I want to thank you all again for all of your kind posts, cards, e-mails, phone calls, visits to the hospital, and especially prayers. I hope all of you have managed to be off from work on Monday for Presidents Day and have a fantastic long weekend!

Friday Update

There’s not really a whole lot to write about today, but I wanted to be sure to post so none of you would get worried and think something drastic happened. Mike had his fourth radiation treatment this morning then ate a good breakfast. The physical therapists came by right after that, and he did well with his therapy. He sat on the edge of the bed for 26 minutes today; yesterday he could only sit up for 13 minutes and the day before that for only six minutes. If he keeps doubling his time like that every day, the therapists won’t be able to work with any other patients because they’ll have to spend the entire day sitting with Mike.

Mike has been pretty quiet and slept a good bit today. The radiation and chemotherapy can make patients tired, so his fatigue is probably from the treatment. The doctor said when starting radiation, patients may get worse before they get better; sometimes swelling incurs. He also said the faster growing the tumor, usually the faster it reacts to treatment. He said we probably won’t see any real noticeable results for a couple of weeks.

In case you missed the Mike’s segment on WLTX last night, I’ve created a link to it on the left hand side of the blog. I thought they did a great job with it. Little did I realize that in addition to adding ten pounds, the camera also makes one’s hair look stringy and forehead big. I never noticed before that I’d be such a great candidate for Botox. And hey, if you get bored and are tired of playing Solitaire, you can pull up the video and play “Count the Pores on Diane’s Face.”

I guess the highlight of Mike’s day today has been when his two favorite sisters-in-law came up and brought the girls for a visit. (That’s according to them, of course.) He always enjoys catching up with what’s going on in the celebrity world and what’s going on at school. It’s like he has his own National Enquirer reporters keeping him informed--after all, inquiring minds want to know!

Some People Will Do Anything to Get on T.V.

Just wanted to let you all know that WLTX-Channel 19 is going to do a story on Mike tonight at 6:00. They came to the hospital and interviewed me and talked with Ralph Schmidt, principal at Richland Northeast, as well. Do keep in mind that the camera adds ten pounds, so that’ll be my excuse for how I look. :-)

Since it’s Valentine’s Day, I served Mike breakfast in bed. Awfully sweet, don’t you think? I may just do the same for dinner as well. He can’t have everything to eat that he would like—it has to be soft and chewable. Chicken wings actually aren’t even out of the question as long as they’re taken off the bone and cut into small pieces. His liquids have to be thickened and probably will be for the next couple of months. My parents just brought the girls up here with their valentines. Mike said, “Savannah Grace, Daddy’s girl” aloud. That’s the chant he normally says to the girls. His ability to talk above a whisper comes and goes, but he has been doing better lately. I think the feeding tube being removed and eating regular meals will help with that. That, of course, is my professional medical opinion.

Mike had his third radiation treatment early this morning. He was put on some antibiotics yesterday as a preventative measure; the chemotherapy tends to weaken the immune system, so they want to make sure he doesn’t catch anything that may be floating around. He’s still on a high dose of steroids; they’re going to start weaning those down but are waiting until next week because the radiation can sometimes cause the swelling to recur. Hopefully, we won’t have to worry about that happening.

Wednesday Checklist

Radiation? Check.
Mike had his second radiation treatment this morning. They came by and got him around 8:15, and he was back in the room around 9:00. Since he is an inpatient, there’s not a set time for him to get radiation each day. They just work him in around scheduled appointments. He will get 30 treatments of the radiation—these are only done on weekdays.

MRI Results? Check.
I couldn’t get a whole lot of concrete results on the MRI because the one he had done on Monday was not a typical one. The radiation doctor only gave me one dimension on the tumor—5.6 centimeters. That is one millimeter larger than the last MRI at Duke. The doctor said the tumor is an odd shape, so he didn’t give me any other dimensions. There is still some hemorrhaging, but I’m not sure how much. He also said that some people take really well to the radiation/chemotherapy combination and some people don’t see much of a result. We all know that Mike is a bit of an anomaly, so please pray that this treatment will work well for him.

Swallow Study? Check.
Mike’s feeding tube was removed, and he had the swallow study. He did pretty well; nothing entered his airway, so that was good. He did better with thicker consistencies than thinner ones. The thinner ones didn’t go all the way down as well, so there is a little risk of it going into his airway which can cause him to aspirate. That would not be a good thing. So, any liquids Mike drinks have to be mixed with some stuff (the medical term) to thicken it. He does NOT have to have a peg put into his stomach right now. As long as the doctors feel like he’s eating well and his nutrition is good, he will not have to do that. I just ordered his lunch, and he will be having roast, mashed potatoes, green beans, pasta salad, and pudding. He was really hoping for that double order of broccoli (seriously, he does like it—go figure), but he’s not allowed to have that.

Clean Shave? No check. Personality Returning? Check.
I attempted to shave Mike again today per his request, but apparently it’s a little painful to be shaved when there’s quite a bit a growth. It was hurting him so badly that he said he was going to slap me, so obviously his personality is coming though. (To those of you who do not know us very well: Mike was just talking smack and would never really hit me. He knows he would be a single man and sitting in the hospital room all by himself if the thought ever even crossed his mind.) Being the ever-thoughtful wife that I am, I went to the store and bought an electric razor for him. Jeez Louise…I did not realize those things were so expensive! The razor is charging now and hopefully by the end of the day, his face will be as smooth as a baby’s bottom.

Chemotherapy? No check. Yet.
Mike will get his Temodar every day at the same time, so he won’t get it until 5:00 this afternoon.

That’s about all for today. Every now and then Mike will talk louder than a whisper. One of his former football players (who affectionately refers to Mike as his “white daddy”) called. I held the phone to Mike’s ear, so he could hear him, and Mike was able to say his name. That was pretty cool.

Treatment Begins!

My apologies for the delay in a post today. There really wasn’t a whole lot of change until late this afternoon when the nurse came by and said the radiology team had come up with a plan and were ready to start Mike’s radiation. Yahoo! That was a really quick turn around on coming up with a plan. When we went down for his simulation yesterday, the nurses told me it’s pretty complicated to come up with a treatment plan. From my understanding they put the MRI and CT scans on top of each other and come up with a plan for treatment. It usually takes a while to do because they have to figure out where they are going to go in with the radiation beams so that they don’t cause any other harm such as damage to his vision. We are very fortunate that they jumped on this and got the plan together so quickly. Since the radiation started today, Mike began the chemotherapy as well. The two are started on the same day because they work better together than they do individually. The pharmacy compounded the Temodar, and Mike received it through his feeding tube. Yes, that would be the feeding tube and not the I.V. like some ridiculous people might think. Can you imagine someone even thinking such a silly thing? I haven’t received the tumor measurement from the MRI yet. They didn’t do a typical MRI yesterday; it is what is known as a “mapping” one to come up with the treatment plan. By the time we got down to radiation today, the doctor had already left, so I was unable to find out the size. Hopefully, I’ll know something tomorrow.

After we returned from the radiation treatment this afternoon, the speech therapist came for the swallow study, so it ended up being a rather productive day after all. The speech therapist had Mike try some of the yummy hospital ice, drinking water, and eating applesauce. He did well with all of those, so tomorrow he will have part two of the study where they will take him down to x-ray to watch him swallow barium. This will let the doctors know if anything is getting stuck in Mike’s esophagus or if all is going down well. I think the plan is to remove the feeding tube from his nose to do the test then if they feel like he still needs some assistance with his eating, they’ll put a peg in his stomach.

Thank you all again for your many, many prayers. Mike and I (and I am sure all of you) are well aware that the only reason Mike is still with us is because of all of your prayers. Please continue to pray. While Mike is showing improvements from day to day, we are still far from being out of the woods.

Mike Bracelets

Some of you may remember from an earlier post that my friend Allison came to visit me for lunch while I was at Duke and taught me how to crochet a chain stitch. (And just so my other girlfriends who made a trip to Duke don’t feel slighted their names didn’t make it to the blog…Kathy, Dianne, Paula, and Sonya came to visit for a couple of hours as well. And of course, my friend Claire stayed with me at Duke the second week I was there; Mike’s cousin Roz was there with me the first week.) Anyway…my girlfriends came up with the idea of creating “Mike Bracelets” since I was ending up with an entire skeen of yarn transformed into one gigantic chain stitch. Lance Armstrong has yellow, breast cancer has pink, and now Mike Starnes has slate blue. So, if you would like a piece of the crocheted yarn to wear around your wrist in honor of Mike, just send a self-addressed stamped envelope to the address below, and one will be mailed to you. All of the “bracelets” have been crocheted by me, so I can’t promise they’re all beautiful. C’mon and cut me a little slack—I just learned how to do this eight days ago.

Mike Bracelet
600 Woodrow Street
Unit G
Columbia, SC 29205

More Progress

Yesterday was another great day for Mike; he was just a Chatty Cathy and talked quite a lot. He has progressed from one word responses and has tried talking in sentences. His speech is very soft and in whispers, so it can be a little hard to hear him, but he most definitely knows who is in the room and what he is being asked. He laughs at appropriate things as well. He was very awake and alert yesterday from about 1:00 until he went to sleep shortly after 11:00. He’s been sleeping most of this morning. (At least I think that’s the case—I’ve been napping quite a bit myself and every time I wake up, he’s asleep. He wanted me to stay here with him last night, so I got up about 5:30 this morning to run home, take a shower, and get dressed, so I wouldn’t scare anyone around here. I was pretty tired, but I feel rested now.)

When I talked with the oncologist (the doctor who agreed to take Mike as a patient from Duke) this morning, he said everything is still on go to start with the radiation and Temodar. The radiation doctor just came in, and he seemed to think that we had to wait longer for the wound from the biopsy to heal before they could begin. I told him that the neurosurgeon came by on Saturday and said it was fine to go ahead with treatment. He actually said it takes “several days” after the simulation to get the computer straight before they begin the treatments. I’ve always interpreted several to mean seven or eight, so I said, “It will be another week before he gets the radiation?” He said it wouldn’t be that long, but it would be “several” days. I’m thinking maybe he’s confusing the definition of “several” with “a few.” Who knows? His teachers growing up must not have had a literacy coach to teach how to understand the difference between the two words. As I’m writing this post, the radiation doctor just came back in and said they have simulation scheduled for 2:00 today. They will do both a CT scan and an MRI. Once I know something from those results, I’ll let all of you know.

Taking the Avastin is still not out of the question, but we have to wait a bit longer since the last MRI showed Mike was hemorrhaging; if he takes it now, it will make him bleed more. Mike’s cousin has been in continued contact with one of the neuron-oncologists at Duke, and she said it will probably be four to six weeks before he can safely start taking the Avastin.

My parents brought the girls to the hospital again yesterday, and they were here for a few hours. I’m beginning to think Ava and Savannah are a most helpful medicine. Saturday night after they visited, Mike started trying to talk. Last night after their visit, Mike was taken off the oxygen assistance. If he keeps this up, he may be turning cartwheels before the week is over.

He Speaks!

Last night was a great night! My parents brought the girls by to see Mike. Since children under 12 aren’t allowed in ICU, it was the first time they had seen their daddy since we went to Duke. Mike was very alert while they were here (not because they were loud—they’re usually pretty well behaved) and seemed very happy to see them. When we held the girls up to him, he was able to give both of them a kiss.

Now for even greater news…Mike said two words last night! Granted they were whispers and weak, but they were words nonetheless. I was telling him he was looking a little gruffy; although I like the gruff look, he does not, so I asked him if he wanted me to bring his razor and shaving cream to get cleaned up on Sunday. He then said “razor.” Since he was so aware of what was going on, I showed him some pictures. I showed the one of him and Ava at the fair (the same one on this blog) and asked him to blink twice if he remembered taking Ava there; he blinked twice. I showed him some other photos as well. He was looking carefully at them, but I couldn’t get him to blink his eyes indicating whether or not he remembered them. I then asked him if it was okay with him for me to go home, take a shower, and get some rest to squeeze my fingers, and he did. I asked several other questions and he would squeeze in response to those as well. As I was leaving, I told him to tell me “bye” and he did. When I arrived today, he was able to say “mornin’” when asked in response to “good morning.”

No other changes for today. They’re going to keep him on the same medications and nutrients. In addition to the radiation simulation tomorrow, he is supposed to have a swallow study done. This will check for what type of consistencies in liquids he can tolerate.

Treatment Starts Soon!

Mike is out of ICU! He has been moved to a step-down unit where he’s still pretty closely monitored, but it’s not as restrictive as ICU, so we don’t have to deal with getting kicked out of his room when more than two people are here or with the wacky visiting hours. We are still in the Motel 6 part of the hospital, so if you do happen to swing by for a few minutes, be sure to park at the South Tower. Do be aware that Mike won’t be able to sit up and talk with you, but he will know that you are here as long as he is awake.

Everything is supposed to be in line to begin radiation on Monday. Apparently, no one in the Columbia area does radiation on Saturdays and Sundays, so that’s the soonest he could begin. (What’s up with not wanting to work weekends? Do these people have a life or something?) The neurosurgeon who did Mike’s biopsy is supposed to come by to check on Mike and give an “okay” to start the radiation. Those of you who know the details of what we went through with that doctor’s practice in January know how difficult it will be for me to play nice if I see him. I’ll try to follow my mother’s lifelong instructions of “kill ‘em with kindness,” but it will definitely be a struggle.

The radiation treatment will be done here at the hospital. They have to do a simulation first, so the actual radiation may not begin until Tuesday. With the simulation, they do an MRI and have to fit Mike with a helmet made especially for him. He’ll have to wear the helmet every time he goes in for treatment; this assures that they are zapping the same spot each time. I just got a copy of the MRI Duke did on Monday, and the measurements of the tumor read 5.7cm x 5.2cm. That’s really smaller than I thought it was going to be. They don’t have an official report here from the MRI done on January 28; I didn’t see an official report there either, but the measurements given to me the night we first arrived at Duke (5.5cm x 5.5cm) were done by the neurosurgeon on call, so maybe that wasn’t a completely accurate reading.

Those of you with any medical knowledge whatsoever were able to figure out yesterday that I am clearly not a doctor (nor do I play one on t..v.). I wrote that Mike would get the Temodar through his I.V., but it will actually be through his feeding tube. I.V., feeding tube…is there really that big of a difference? (Don’t feel compelled to answer that.) I think everyone was able to use their inference skills to figure out that I meant Mike would not be able to swallow the pill for himself, and it would have to get in his body by some other means. Mike will begin taking the Temodar the same day he begins radiation.

On another positive note, I got to see my girls yesterday!!! I’ve decided that Ava and Savannah are going to have to stay in Columbia when they go to college because going that long without seeing or talking with them just isn’t a good thing. Ava is normally an out of sight, out of mind kind of girl, so I was very happy when I walked in and she said, “Mommy! Mommy!” I was lucky Spongebob wasn’t on, so I didn’t have any competition there. Savannah is getting huge—she’s gained nearly a pound and a half since her four month check-up three weeks ago. I’m going to have to check and see if Jenny Craig makes baby formula and rice cereal.

One other pretty cool story…Mike’s nurse for today told me that I didn’t know her (nor did she know me or Mike), but that Mike has been on her church’s prayer list, and they have been praying for him. She recognized his name when he was checked in. Pretty neat, eh?

More Good News

Mike is still stable and doing well considering the circumstances. I spoke with the doctor, and he’s going to have a few tests run to see about going ahead and starting radiation. He’s looking at starting the oral chemotherapy as well. Right now they’ll have to crush the pill and give it to Mike through his I.V. I’ll let y’all know when this treatment definitely starts. (This is not the Avastin pill; Avastin is actually not a chemotherapy agent…I believe what Mike will be taking is called Temodar and is what is traditionally used to treat glioblastomas.) The fact that Mike is able to have any treatment at all is a miracle. If you’ll recall from my post earlier this week, after Mike’s latest MRI report came, the doctors told me there was nothing else they could do. There may have been nothing they could do, but obviously there is plenty that God can do.

Physical therapy has also been ordered since Mike has been in the bed for so long without a whole lot of movement. After being in the bed for several days following his biopsy a few weeks ago, Mike was very weak from not moving around for so long. As you’re well aware, he’s been in bed much longer this time, so he definitely needs the therapy. Since Mike is progressing as well as he is, we are going to move out of intensive care! I’m not sure exactly when this move will take place, but I think it’s supposed to be today at some point; I think we’re just waiting on a room to come available. He is by no means sitting up and talking, but if you could have seen him a few days ago (heck, even Wednesday morning before he was being transferred back home), you would be no less than amazed by what God has done.

I want to thank all of you who made telephone calls and sent e-mails to help with the issue of insurance paying for transportation back home. As I’m hearing of more and more of you who made contacts, I’m beginning to think that neither my writing nor verbal skills had any impact on Blue Cross Blue Shield at all—it was all of you who made the difference. I guess I’m going to have to enroll in that remedial communications course after all. Mike and I are so blessed to have such wonderful friends and family. Thank you for everything you have done and especially for all of your prayers.

A Day for Miracles?!

My apologies for the delay in updating the blog, but I think you’ll find this post worth the wait…

We’re home!!! Mike ended up being transported by air back to Columbia last night. Apparently, I need to lose more pounds than I thought because they said I couldn’t ride with him due to weight issues. It took a little longer to get back than they anticipated because of the weather, so he was admitted only about an hour before I got to the hospital. I ended up getting back to my house and in the bed around 3:00 this morning.

I must need to work on my writing skills more than I thought. I e-mailed my appeal to Blue Cross Blue Shield yesterday around 4:00; the lady called me back and said they don’t make the rules, they just follow them and since it was not medically necessary for Mike to be transported to Columbia, they would not pay for it. My verbal skills must be a little better than my writing (either that or she thought I was completely unstable when talking with her on the phone) because I got a little not-so-nice with the lady and told her that it was necessary and that it wasn’t right on any level to allow me to watch my husband die alone 250 miles away from home when I have two small children that I haven’t seen in ten days. She told me there was another level of appeal and that she would e-mail me the information for that. Well…today I received a voicemail message from that same lady and she said that Blue Cross Blue Shield has decided to pay for the transport. Maybe there is a heart buried within the insurance company somewhere after all.

I realize I’m not supposed to get all excited about this, but it’s very difficult not to. Yesterday around 4:30, Mike started opening his eyes. It was the first time he had opened his eyes since he was admitted to the ICU. I went over to him, and he very clearly knew who I was. He was looking at me instead of “through” me like he would when I would open his eyelids. He could squeeze my hand and move his feet on command. I thought maybe it was a fluke, but he continued to do this (though not always squeezing on command) until they whisked him off to be returned home. I was basically told not to think that this was some sort of sudden healing—the tumor has probably just shifted and relieved pressure from the area of the brain that was controlling those behaviors. But…Mike has been doing the same thing today!!! In fact, when I came in to see him, he had been extubated. In other words, he has been taken off of the ventilator and no longer has a tube down his throat helping him breathe. He does have oxygen hooked up to him, but that just goes through his nose. They are now working on Mike’s nutrition, so he’s not so weak. I talked with the doctor today, and he said if Mike continues to get better, they can start to treat the tumor. If he’s better, they can at least start with the radiation and chemotherapy. The Avastin I wrote about in earlier post is not completely out of the question either, although it may be a bit risky. (Avastin is the drug that has shrunk brain tumors by half in 65% of the patients who have taken it.) We’re going to have to monitor his progress and weigh the risks with taking it. Keep praying!!! Given the condition Mike has been in the last ten days, I think it’s nothing short of a miracle that he is responding like he is now, even if the ICU staff at Duke thinks it’s probably just a shift in the tumor. We serve a God who is greater than any tumor and can make anything happen.

It Figures...

Due to the weather, they won’t fly a plane out tonight. They will, however, go ahead and give us ground transportation, so Mike will travel to Columbia by ambulance tonight. They won’t be able to leave until 8:30, so it will probably be around 1:00 in the morning before he gets there. If we wanted to wait to go by plane, we would have to wait until tomorrow evening for another flight. Waiting until tomorrow night to leave just to go by plane didn’t make much sense to me.

I called Blue Cross Blue Shield’s president to try and explain the absurdity of them not being willing to cover the cost of transporting Mike back home. I was only able to talk with his secretary, but she had someone else call me back shortly thereafter. He said according to their records, the claim has only been denied once and I could appeal it. I’ve already written the letter of appeal and e-mailed it to them. They have received it, and they are going to try to get back with me by tomorrow on this issue. I guess we’ll see if my writing serves me well or if I need to go and take some remediation courses.

It's Official

Everything is in place, and we will be coming home this evening. There is a front coming through, so we won’t be able to fly out until after 7:00 tonight. The flight is only about 35-40 minutes, but with transport to and from the airport, it will probably be between 9:00 and 10:00 before we get to the hospital.

Looks Promising

It looks like we may get to come home today. Dr. Madden has agreed to take on Mike as a patient, and we’ve heard from two friends that Lexington does have availability in their ICU. Nothing is official yet, but it is looking promising at this point. Insurance has denied the flight home three or four times now, so if anyone knows someone in high places at Blue Cross Blue Shield or the State Budget and Control Board who can get that approved, that would be really great. I most definitely don’t mind paying if there’s not another choice, but you know Mike hates to waste money if we don’t have to. I don't think they make coupons for medical flights. The point we’re trying to make is that we didn’t come up here for extended treatment; we came for a clinical visit and thought we would only be here overnight. It’s similar to going on vacation and having to go to the hospital; it’s not something that was planned. I’ll update the blog once I know something official.

Problems Getting Home

We’re having problems getting Mike back home. There are no ICU beds available at Richland right now, and since Mike is stable in another hospital, it is not a priority for them to get him there. Does anyone have any connections with a hospital in Columbia? We need an ICU bed available and a doctor willing to admit him in order to get him home. Right now the insurance company is balking at paying for the transportation back home, but the Patient Resource Manager has things lined up to where we can get the flight back, and I’ll just pay for it myself, so that’s a non-issue. The issue is getting an ICU room and a doctor willing to take him.

No Options Available

The results from Mike’s MRI are back, and they are not good. The tumor has grown by 30% since he was admitted last Monday, and his brain is hemorrhaging. The doctors have said there is nothing they can do for him now; it will just be a matter of days. We are working on having him transported to a hospital in Columbia, but that probably won’t happen until tomorrow.

Still No Change

I know a lot of y’all have been waiting on an update for today. I haven’t really written anything because there hasn’t been much of a change. My Super Bowl plan didn’t work last night, though Mike would have been pleased that the underdog won. When I arrived this morning, they told me an MRI was scheduled, and I was waiting for that to be done and have the results before I posted anything. They have not done it yet, but it is still supposed to be done this evening some time. I suspect I won’t get any results until tomorrow.

They did the ultrasound on Mike’s legs yesterday to check for blood clots. It came back negative, so that’s good. Since he hasn’t had any seizures in quite some time, Mike is no longer on a 24-hour EEG monitor. He is still on anti-seizure medication. His blood-sugar is normal, so they’re weaning him off of the insulin. He does appear to have a staph infection, so we get to wear these lovely yellow gowns and latex gloves when we come in his room now. I’m certain they’d be all the rave out on the city streets, so I need to be sure to grab a few extras to make a fashion statement for whenever I return to Columbia.

Other than that, there has been nothing eventful today. Mike is still non-responsive. My friend Allison came up yesterday and taught me to crochet a chain stitch. That’s all I know how to do, so if anyone has a dire need for a lovely nine-yard piece of crocheted yarn, I have one ready for you.

Still the Same

This is picture of Mike's tumor, so you can see just how big it is. The white stuff around the tumor is the swelling. The doctors here couldn't believe that Mike was functioning as well as he was for as long as he did. We figured it was because he is so overly orderly and anal about stuff (shocking to some of you, I know) that he was able to compensate for the difficulties the tumor was causing.

There still hasn’t been much change. Mike now has a urinary tract infection, and the doctors are giving him antibiotics for that. His blood-sugar level was a little high yesterday, so they upped the amount of insulin they were giving him; it is now back to normal. He did open his eyes to pain (the first time he has opened his eyes since Monday), but we’re not supposed to get excited about anything he does unless it is consistent. Either today or tomorrow they are going to run a test to make sure he isn’t developing any blood clots in his legs. (He is wearing venodynes to help control them.) The oncologists are most likely going to have a CT scan performed on him tomorrow to see if there have been any changes since the MRI last week.

The tumor cannot be treated until Mike is better. If they tried to give him the chemotherapy now, it would make him worse. All of the medications he is now on weaken his immune system; the oncologist yesterday said his immune system is very similar to an HIV-positive patient’s. There is available a miracle drug called Avastin that would help shrink the tumor if he were better. They have been using it in clinical trials for almost two years now. In 65% of the patients, the tumor has shrunk by half. The other 30-35% saw a shrinking of 20-25%. It does cost $35,000 for a six week dose, but if Mike could get better and sign an agreement to the trial, the medication would be provided at no cost to us. The oncologist said they have seen the Avastin begin to shrink the tumor within 24 hours, though the patient does not feel a significant change for at least a week or so.

I think I’m going to turn on the television tonight and let the Super Bowl be a little background noise. Maybe some offensive and defensive play talk will jolt him out of this. Goodness knows I can’t talk intelligently about football. I can dream this will work at least…

No Change

As was the case yesterday, Mike is moving his arms and legs a bit, but he doesn’t do anything on command. He is on some medication that has controlled the seizures; he hasn’t had any more. The neuro-oncologist wants to just watch and see what he does over the weekend. There may or may not be any change; there’s no way to predict that. Today around 4:00 will be the 48 hour mark since Mike was taken off of the Versed. If there continues to be no change, we are going to try to transport Mike back to Columbia later in the week, so we can be home. As far as what the ICU is doing here, that same treatment can be done in Columbia. Our oncologist in Columbia has agreed to oversee him there if we end up doing that. He talks to the oncologists here regularly, so they will be able to communicate about what to do if Mike makes any changes later.

More Seizures

Mike was taken off the Versed yesterday around 4:00 and started having seizures again. He was given another kind of medication to help control those seizures. The doctors want to wait and see how he is 48 hours after getting off the Versed and reassess him then. I don’t know that there are going to be any good options at that point; it doesn’t look very promising.

Thank you for all of your prayers and posts to the blog. I have read all of your messages and greatly appreciate them. Please continue to pray.