Nothing to Write Home About

As I figured, there wasn’t much excitement over the weekend. There really isn’t much to report today, either, but I don’t want y’all to get worried since I haven’t posted since Friday. Mike’s blood count is still a little low, so that needs to increase to build up his strength. He’s eating pretty well, but he doesn’t talk to me much. He seems most alert after he sits up and eats lunch. The only change that is going to be made is that Mike’s steroids are going to be lowered from 20mg to 15mg four times daily. The doctor doesn’t want to change too much at one time. By doing things slowly, if Mike has a negative response to anything, we’ll know the cause of it.

Since there isn’t much else to report, I’ll give you a parental tip for the day. If your child isn’t fully potty trained, it’s a good idea to pack an emergency diaper and wipes. One of my sisters was planning to take Ava to see a movie yesterday. Since it was going to be Ava’s first movie, I wanted to join them, so I met them at the theaters. Towards the very end of the movie, Ava announced she had “poopy pants,” and I asked my sister for the diaper and wipes. She had neither. I won’t gross you out with all of the details, but it was nasty enough to where it was coming out the top of her diaper. Ewww!!! Luckily, I had some wipes and paper towels in my car and at least got her cleaned up for the ride home—even though she had to go sans a diaper or panties. I swear this is the type of stuff teenagers need to experience so they know just how much work a child is! My sister, by the way, claims complete innocence and says she wasn’t responsible for packing Ava for the event. Okay.

Feeding Tube Gone!

The feeding tube was removed yesterday, so Mike is eating real food again. Well, that’s if you want to call it real food. All of his meals are still of the puréed variety, and the liquids continue to be thickened, but it beats the heck out of having a tube up his nose and surviving off of Jevity. Jevity is the “food” they give him through the feeding tube. It looks like chocolate milk, but I have a fleeting suspicion it tastes nothing like that. I won’t even taste test my own children’s baby food, so I’m certainly not trying that stuff; it’s not as if they’d order something different if I said it was nasty.

Anyway…there probably won’t be much to write about over the weekend unless Mike creates some sort of drama. Of course, that wouldn’t be completely uncharacteristic for him. The doctor is going to keep all of the medications the same over the weekend then on Monday start making some changes. He’s going to start lowering the dose of steroids next week since Mike is on that insanely high amount. I’m not sure what other changes will be made. He’s going to hold off on giving Mike any Temodar until his blood counts get better. The normal protocol is to take the chemotherapy for five consecutive days in the month after radiation. I’m not sure if that’s every week or just once in a month’s time.

Other than that, there’s really not much to report. Please continue to pray that Mike regains his strength and that he is able to eat well. He had a little bit of difficulty with the eggs this morning, but I think that was my fault by giving him too much. I realize it comes as a shock to you all that anything could possibly be my fault.

One more thing before I finish for today…I’d like to thank whoever left the beautiful afghan in Mike’s room. Last Friday Mike’s cousin Regina stayed with Mike for a few hours so I could spend some time with the girls. While I was gone, someone came by while Regina was on the phone. As soon as Regina finished her conversation, the woman was gone, but she left a bag with a gorgeous sage green afghan. There was no note indicating whom it was from. There was just a piece of computer paper with a Bible verse (Psalm 91:11) and a message that God sends angels to keep watch over us. Thank you, angel!

Radiation Complete

Mike graduated from radiation treatment today. He even got a certificate to prove it! And since some of you were a little disappointed that Mike opted not to keep the staples in his head from the biopsy, I made the executive decision to keep the “helmet” that was used during radiation. It’s just a little souvenir. I figure Ava or Savannah can use it if one of them ever decides to take up fencing.

Mike’s blood count is okay today. Not great, but not bad. Because the chemo can have such a negative effect on it, the doctor is still holding off on giving him Temodar. Once his blood levels get back up, Mike is probably going to take the Temodar in conjunction with the Avastin, though I’m not sure exactly when that’s going to start. I would imagine that the doctor would want to do one more MRI before beginning the Avastin to make sure there is no hemorrhaging, but I’m just speculating on that. I asked the radiation personnel this morning when they normally do the follow-up MRI, and they said between four and six weeks after the last treatment. If you recall from earlier posts, radiation continues to work its magic even after the final treatment, so that’s why they wait a while.

Today should be the last day with the feeding tube. The doctor wanted to keep it in for this last day of radiation, and the plan is to remove it tomorrow morning. The echo-cardiogram (heart ultrasound) results came out fine, so Mike was taken off the perpetual heart monitor this morning. He continues to be on the oxygen, but he doesn’t have to wear the mask—it’s just the tube that sits at the base of his nose, so it’s not that big of a deal. Oh, and I think I forgot to tell you that Saturday afternoon they came in and did an ultrasound on Mike’s legs to make sure he didn’t have any blood clots. When I posted the thread for that day, I had not been told that test was going to be done. Apparently, if a blood clot develops in a certain area, it can cause problems with the lungs. Fortunately, Mike got the all-clear on that. The only thing that could be seen on the ultrasound was some fluid in the legs…that’s a heck of a lot better than finding blood clots, seeing as how a blood clot can kill you and all. Mike didn’t get physical therapy on Monday because the therapists were waiting on the results of the ultrasound. They didn’t want to move him if he had any clots. Of course, they could have just asked me, and I could have told them that nothing was found. Surely, they would have respected my professional medical report.

Over the last few weeks, Mike has pretty much stopped moving his arms and legs at all on his own. However, yesterday during physical therapy, he moved his arm by himself twice. I’ve gotten to the point now where I move his arms and legs a couple of times a day in addition to the physical therapy he gets. He has a pretty hard time holding his head up during therapy, so I’ve started stretching his neck muscles several times throughout the day.

That’s about all the excitement for the time being. Now it’s a whole lot of wait and see. Hopefully, Mike will regain a lot of strength over the next week or two since he won’t have the radiation zapping energy from him, and we’ll be able to start phase two of his treatment soon.

Making Strides

It apparently was just taking Mike a little while to get over the initial shock of having Lucas blood run through his veins. I think that would very well shock anyone’s system. After a second helping of Lucas platelets last night, Mike is doing much better today. He was taken off the BIPAP machine this morning; his oxygen level actually went up after its removal. (Side note: the BIPAP machine is similar to the same sort of thing people with sleep apnea use while sleeping.) He is still receiving some oxygen, but it’s just the tube that sits at the base of his nose. By having that and not the mask, I was able to shave him today. I’m getting the whole electric razor thing down pat. He only got one little nick today—and that was on his neck. I’m sure it’s only because his blood count is lower than the average person’s, so he’s more susceptible to bleeding easily. It could in no way be a result in my lack of shaving skills.

Our regular oncologist said yesterday’s chest x-ray came out fine. Our oncologist wasn’t here this weekend, but in reviewing everything, he seems to think that Mike didn’t actually aspirate—he probably just got something stuck in his airway. Mike’s heart rate dropped a little yesterday (it was in the 50’s), so a cardiologist was called in, but he said it wasn’t a big deal; they don’t get concerned unless it drops to the 30’s or 40’s. Mike did have an echo-cardiogram (ultrasound on the heart) done today—I’m guessing that’s just for precautionary reasons. Mike will stay on the feeding tube for today, but he will probably be taken off it tomorrow. His hemoglobin is still a little low (around 8), so he’s going to get another unit of blood today. His platelet count is fine, so he doesn’t need anymore of those right now. Mike has been very alert today (and was awake most of the day yesterday), but he’s gone back to talking in whispers. Hopefully, as his strength builds back up, his voice will return. Mike did have his radiation today, so he only has two more treatments to go!

The Mask

Apparently, Mike has aspirated something, so he’s not doing so great right now. A lung x-ray was conducted during the night, and something was found in Mike’s lungs. His oxygen level dropped to 83 overnight, so when I came in this morning, he had on an oxygen mask, not just the tube that sits in his nose. (The mask helped his oxygen get up to 93.) A lung doctor came in to look at him and ordered that Mike be put on a BIPAP machine for at least 24 hours; this forces pressure into the lungs and helps oxygenate him. He’ll also be put on some antibiotics. If all of this doesn’t help, they may have to fish out whatever it is in Mike’s lungs. Because of the mask Mike now has to wear and the risk of further aspiration, he is going to be put on a feeding tube. I’m not sure how long he’ll have to stay on that, but since he was eating well otherwise, it will probably only be until they make sure his lungs are clear. Mike was retaining an insane amount of fluids, so he was given some Lasix which helped that tremendously. (When I left last night, he looked pregnant—not so much anymore!)

Mike has continued to not receive the chemotherapy; tomorrow will be two weeks since he had his last dose of Temodar. The radiation he missed on Tuesday will be tacked on, so Mike has three treatments left. If he doesn’t skip any more treatments, he will be finished on Wednesday. Mike’s blood counts have still been a bit low, so he received blood and platelets yesterday and will receive another round of platelets tomorrow. My sisters Cindy and Karen donated their platelets for Mike, so he now officially has Lucas blood in him. We’ll see what kind of magic that works. He had some sort of infection in his blood the other day, so his regular antibiotics were changed.

It’s probably not a good idea to visit the hospital today or tomorrow. The mask Mike is wearing covers his nose and mouth, so he is unable to talk at all right now. (He’s had selective speaking before…yesterday morning he talked to me pretty well, but the three days before that, he didn’t say much. I’m sure he hasn’t just been ignoring me. What man would ever want to ignore his wife?) I hope you all have a wonderful Easter; I hear the Easter Bunny has removed all calories from chocolate this year, so eat up! For those of you on spring break this week, enjoy some rest and relaxation; most of you who teach in the Columbia area will need all the R&R you can get—when returning to school next week, it’ll be nine solid weeks with no days off! Yikes!

It’s with great sadness that I share with you Ron Ridgeway, the gentleman with a glioblastoma I told you about in an earlier post, has passed away. I haven’t talked with his mother since she told me about contacting Duke, but I read of his passing in the newspaper. Please continue to pray for his mother as well as the rest of his family during this most difficult time for them.

A Little Better

Mike is doing a little better today. He was awake when I arrived this morning and ate just about all of his breakfast. (Despite forgoing breakfast yesterday, he did eat his lunch and dinner.) I just finished feeding him lunch, and that only took about 25 minutes—not too bad considering he had a meat, two veggies, fruit, pudding, and yogurt. I can give him about four or five bites of food between liquids, so it’s not nearly as torturous to feed him as it was for a while. He hasn't said much, but I'm getting used to that these days.

The lung x-ray showed a little something on his lower left lung. It’s probably pneumonia, but it can be treated with antibiotics and the breathing treatments he’s getting every four hours. There doesn’t seem to be much worry about that. He hasn’t been coughing much today, and the respiratory therapist said she thought his lungs sounded a little better. He’s still on the oxygen. I suspect he’ll be on that until his lungs are all clear. I think the doctor had the CT scan done yesterday to make sure Mike’s brain didn’t start hemorrhaging; the report shows that it has not, so that’s positive. Hemorrhaging would not be a good thing because Mike would not be able to take the Avastin if that occurs. I asked the doctor how long after radiation Mike would be able to begin taking the Avastin, and he said probably a week or two. The CT report mentioned having a follow up (i.e. MRI) because “Mass effect on the ventricular system appears just slightly more prominent than on the comparison of March 6, 2008, particularly the third ventricle which on today’s exam is measured at approximately 8.5mm vs 6.5mm on the prior exam.” Whatever that means. (Listen, don’t set your expectations for me too high and expect me to understand every little report. I don’t have my advanced medical degree. Yet.) The doctor said he isn’t very concerned about that, and since Mike was up and eating fine today, he’s not going to have the MRI done. He seems to get more concerned when Mike isn’t acting normal (by normal I mean recent activity normal)—he wasn’t so “normal” yesterday and the night before that, so that’s why he had the scan done.

Mike still isn’t getting the chemotherapy because his blood counts are so low. He will be given some more platelets this afternoon. This is Day 10 with no Temodar. (As a side note, I was looking over my stuff from Duke today and realized Temodar is the chemotherapy that is used in their trial along with the Avastin. I’m not sure if Mike will continue with the Temodar once he starts the Avastin here.) Mike has been making those noises again today. He started with it this morning and didn’t stop until lunch. I got a little bit of a hiatus, but he has started moaning again. I swear you’d think there is a goat in the room. When he’s doing that, I keep the door shut so other patients don’t freak out and think there are wild animals running around the 8th floor.

Now, don’t go getting all excited about what I’m writing next—though it would be easy to do so—because I told you before that measurements on CT scans aren’t as accurate as those done with an MRI. But…according to the scan done yesterday, the tumor now measures 3.4cm x 3.9cm. You can scroll down to the March 13 post to see previous measurements. Sorry, but I don’t have any pictures of the scans to post. I’m only given written reports of them. Maybe we’re lucky and that is an exact measurement of the tumor. We can pray that’s accurate, right? Hey, look what prayer has done for us thus far!

News Flash

No radiation today. Mike may or may not make up this session; the doctor will have to decide. Usually an extra treatment is tacked on at the end.

Antibiotics have been changed.

A CT Scan will be done today.

Mike is still sleeping and hasn't eaten anything since dinner last night.

Not-So-Great Day

Mike is not doing very well thus far this morning. Yesterday he kept making a moaning/whining type of noise all day. He was given a sedative around 4:00 and that helped it, but it also knocked him out! I could hardly wake him up to eat his dinner, but he ended up eating all of it. After dinner he started making those noises again; he was given another dose of the sedative, but it didn’t stop the noises even though he was sleeping. His oxygen level got a little low, so he was put back on oxygen.

This morning when I came in, I discovered he had been put on a heart monitor. His blood count continues to be low, so he is going to be given blood and platelets today. I haven’t been able to get him to wake up and eat this morning. (Mike not eating? You know something’s askew.) Normally when I move the bed to a 90 degree angle, he awakens and is ready to eat. I had a difficult time just getting him to take his medicine. He still has that congestive-sounding cough that has been lingering around for a week or so. He was give yet another chest x-ray last night, and we’re still waiting on those results. I’m not sure if he’s going to have his radiation treatment today. They came for him this morning, but the doctor wanted to see how he did waking up before sending him for treatment. Obviously, that’s not going so well, so I don’t know whether or not the radiation will be nixed. Mike may end up having another CT scan or MRI today to see if that unfolds the mystery of this sudden change. I tell ya, he’s just always got to be a problem child, doesn’t he?

More of the Same

I haven’t updated the blog in a couple of days because there really hasn’t been a whole lot to post. Mike was given some platelets on Friday, but his count was down again today. His white blood count continues to be low, so he is still not receiving Temodar. He hasn’t had the chemotherapy since last Sunday, but he has been continuing with radiation on weekdays. He has six radiation treatments left. Please pray for Mike’s blood levels to return to a more normal level so he can take the Temodar without any risks; it will only be given as long as he has radiation, so the window to take it ends next Tuesday.

Mike seems to be eating a little better. It only took me about 35 minutes to feed him dinner tonight. He’s still on the puréed food (I know you all are jealous), but I can now give him a few bites before giving him any liquids. I was having to give him a half spoon of food alternated with a half spoon of liquid. Eating that way was horrible; his meal would get ice cold before he could finish with it. Hopefully, he’ll continue to get better with this and be able to switch back to the mechanical soft foods before too long.

On the good news front, Mike and I won’t be going into the poor house this month. Since have given birth to two children in the last three years, I was running out of days to take at work in order to stay at the hospital with Mike. I applied to my district’s Sick Leave Bank for additional days. I was a little nervous about getting approved because the only real rule is that it has to be something catastrophic, but the four people I have known to apply in the past have been denied. On Friday I received a letter from the district letting me know I have been approved for additional leave. Yahoo!

Holy Mackerel, Batman!

Apparently working overtime isn’t in some people’s makeup because I did not get any MRI results last night. As a matter of fact, I called the hospital just before I went to sleep at 11:30, and they still weren’t in. Anyhoo, I got the results this morning and they are looking good! Just to give you a review, the measurement I first gave you all in January came from the CT scan Mike had on January 2; those measurements were 4.5 cm x 4.7 cm. An MRI, which is more accurate, was administered on January 3, and showed a measurement of 5.5cm x 4.3cm. The MRI done by Duke on February 4 (when I was subsequently told Mike only had “days” to live) showed a measurement of 5.7cm x 5.2cm with new hemorrhaging. Now for the results of yesterday’s MRI (drum roll, please)…the tumor now measures 4.8cm x 4.0 cm, and there has been no additional hemorrhaging. Yes, that does indicate that the tumor is smaller than when Mike was first admitted to the hospital in January. For those of you who prefer lists instead of numbers all jumbled up in paragraph form, here’s a recap of tests and measurements:

CT Scan (January 2): 4.5cm x 4.7cm
MRI (January 3): 5.5cm x 4.3 cm
MRI (February 4): 5.7cm x 5.2cm, additional hemorrhaging
MRI (March 12): 4.8cm x 4.0cm, no hemorrhaging

Now that the tumor is smaller than the size when Mike was actually functioning on his own every day, it seems to me that Mike is just taking full advantage of all of this pampering he’s been getting from me. I’m going to have to toughen up on him a little more. Mike’s just going to have to get off his duff here pretty soon and start doing something productive…heck, I think he could even handle selling some of those Chick-fil-A’s and ice cold waters.

Mike’s platelets are higher than yesterday (39,000), but they’re still too low to take the Temodar, so he’s going a fourth consecutive day with no chemotherapy. With the results of the latest MRI, our oncologist still doesn’t understand why Mike is having difficulty with chewing. The latest theory from speech therapy (since it’s not from the tumor growing) is that Mike is fighting the tumor, so it’s making his body weak.

The mother I told you about the other day called Duke about her son. They called her back after she left a message, and she talked with Dr. Friedman. She apprised him of what was going on with her son, Ron, and asked the doctor if he could help. Dr. Friedman told her he could and just needed for her doctor to call him. Please continue to pray for Ron and his mother and that they will be able to get to Duke soon.

I have to share one sweet story before I sign off for today. Yesterday Ava and Savannah came to visit Mike. Unfortunately, Savannah developed a runny nose right when they got to the hospital, so she couldn’t come in the room. As Ava was sitting on the bed with Mike watching cartoons, she looked over to me and said, “I love him.” I told her she needed to tell him that, so she looked up at Mike and said, “I love him.”

An MRI is on the Brink

For the third day in a row, Mike’s platelets are low, so he will not have his chemotherapy again today. It’s actually lower today than it has been the last two days. (Today he’s at 30,000; the previous two days he was at 50,000.) Though platelets can be given to him, no plans are in the works for that right now. His white blood count is a bit low as well, so if you have the slightest cold or sickness, please do not stop by the hospital; Mike’s immune system is very low right now.

Mike had his swallow study done yesterday, and it is officially going to take forever to feed him each of his meals. (I looked up “forever” at dictionary.com and it had a picture of Mike being fed. I'm not sure how they got the advance photo.) The food still has to be puréed, and he can only have half-teaspoon bites. Each bite must be alternated with a liquid. The liquid has to be of the nectar-thick variety (which he has been having since he came off the feeding tube) and has to be given to him by spoon—he is not permitted to use a straw. I asked the speech therapist why he would have this change since he was eating so very, very well before. She said the tumor causes it as it grows. The brain tells us to swallow, and the tumor is causing his brain not to tell him that; she said it’s not uncommon. What?!? Excuse me, did you just say it’s growing??? I thought they were supposed to be shrinking the darn thing. Obviously, she doesn’t have any proof of any growth. The doctor did say that this whole swallowing thing is throwing him for a bit of a loop, though, because the CT scans didn’t show any problems, and otherwise he seems to be doing fairly well considering he has this enormous mass invading his brain. So, Mike is going to have an MRI today since it gives a more detailed picture of what’s going on (a 3D version instead of just 2D).

Yesterday I learned that the radiation department is usually closed on Good Friday, so Mike won’t have radiation that day. That means he won’t get his last treatment until Tuesday, March 25. After his 25th treatment (which will be this coming up Monday), they will redesign another plan for how they will administer the radiation. I'm hoping that means that the tumor is shrinking so they have to readjust where the beams are going in. I guess I’ll find out if it's shrinking when he has the MRI today. The radiation oncologist said Mike will lose a greater amount of hair when he begins the new round; he was actually a bit surprised that Mike hasn't lost more hair than he has already.

One other thing…when Mike finished his radiation yesterday and we were about to head back up to his room, a lady stopped me and asked if I was Mrs. Starnes. I’m not sure how she knew about Mike (is he gaining celebrity status?!), but she knew he has a tumor and wanted to talk to me about it (maybe she’s heard about all of my medical expertise). She had asked some hospital personnel about me and Mike, but they couldn’t tell her anything because of the HIPAA laws. Her son, who is in his fifties, has been diagnosed with a glioblastoma as well and she is terribly upset. In addition to Mike, please pray for the strength of this mother and for improvements in her son; his name is Ron Ridgeway.

I had another lady stop me yesterday afternoon and ask me if I was "the coach's wife." I'm telling ya, you just never know who you're going to run into...that's exactly why you've always got to have your A game on! :-)

Monday Mania!

Mike had a great day on Sunday; perhaps it was from all of the rest he was able to get on Saturday. (Or maybe it was all of the Q.T. he got from his wife.) He sat up and talked much of the day. He did get a urinary tract infection over the weekend, so his antibiotics were changed. His platelet count was also pretty low; as a result, he was not given chemotherapy today. It is not uncommon for this to occur; in fact, the doctor said it is more unusual for a person to go the entire 42 days of treatment without skipping a dose or two of Temodar. He will not “make up” the dose he missed—his last chemotherapy will be taken on his last day of radiation in two weeks.

Even though Mike’s food is now puréed, he seems to be having a little bit of a difficult time eating. He looked like he was choking at times and said he felt like he was choking as well. He is having another swallow study done on Tuesday. He’s also been having a hard time breathing after eating, so I’ve had respiratory therapy come in to do breathing treatments after his last few meals. This afternoon he began coughing a good bit and had an even harder time breathing. In addition to the breathing treatment, the respiratory therapist suctioned some mucus from his lungs a couple of times. (Hope you’re not eating as you’re reading this!) This evening Mike had an x-ray to check his lungs for infection then was given some Lasix. I was a little worried that something was seriously wrong, but I just got the report back and all is clear. Since having the Lasix, Mike hasn’t been coughing and his breathing is much better. All the evening drama is the reason for the late post tonight. Now that I know everything is okay, I can go home and get a little sleep. Hopefully, there won’t be another wreck on I-26 tomorrow like there was this morning, and I can get to the hospital in a timely fashion. Those of you who drive towards town from the Irmo/Chapin area in the mornings know my pain!

A Must Read

Phillip and Jennifer Rockefeller sent a copy of the true story 90 Minutes in Heaven by Don Piper for Mike’s birthday. I read the entire book today, and it was fantastic! I realize I’m probably in gross violation of laws and may very well end up in Copyright Jail (where I’m certain I’ll see many of you other teachers), but I’ve written the book’s prologue below. What can I say? I’m a literacy coach and know the importance of hooking a reader from the get-go. I will be shocked if reading the excerpt below doesn’t get you interested in reading the book in its entirety. It has sold over two million copies, and after reading the whole book, I really don’t think the author would mind me sharing the prologue with you all.

I died on January 18, 1989.

Paramedics reached the scene of the accident within minutes. They found no pulse and declared me dead. They covered me with a tarp so that onlookers wouldn’t stare at me while they attended to the injuries of others. I was completely unaware of the paramedics or anyone else around me.

Immediately after I died, I went straight to heaven.

While I was in heaven, a Baptist preacher came on the accident scene. Even though he knew I was dead, he rushed to my lifeless body and prayed for me. Despite the scoffing of the Emergency Medical Technicians (EMTs), he refused to stop praying.

At least ninety minutes after the EMTs pronounced me dead, God answered that man’s prayers.

I returned to earth.

This is my story.

It’s been pretty quiet around the hospital today. Mike has slept most of the day, and I got in a good bit of shut-eye myself. There really haven’t been any big changes other than we altered Mike’s meals to being puréed since he’s been having such a difficult time chewing recently. Let me know if you would like some pulverized peas and carrots, and I’ll see about having a couple of servings sent to ya. On the bright side, Mike can now have brocolli from the cafeteria. Physical therapy has been going okay—Mike sat up for about 40 minutes yesterday, and he’s holding his head up much better—but he is still a long way from getting up and moving around on his own.

Oh, and I got a new phone, so I’m back to the same number I’ve been using for the past couple of months. So if you need me, call me on that number. Because the other cell wouldn’t even turn on, they couldn’t transfer my phone book. As a result, I’ve lost some of your numbers because that’s the only place I had a record of them. Hopefully, I won’t have another faux pas with this Nokia!

Duke Calls

Since Mike didn’t seem to be getting a whole lot better with his responses to questions and his eating has slowed down, he had yet another CT scan last night. I was afraid that it was going to show he was hemorrhaging or the swelling had grown, but the report read that things are the same as they were with his last scan on Saturday. The measurement was the exact same (6.8 centimeters including the swelling). It is taking what feels like forever to feed Mike. Last night it took him an hour to eat, and he only had a meat, two vegetables, and applesauce. It’s clearly taking a lot of effort for him to eat lately, so he hasn’t been eating quite as much. Anything soft (yogurt, mashed potatoes, etc.) goes down pretty quickly, but if he has to chew, it takes quite a while.

Dr. Desjardins from Duke called our doctor back today. (She’s the doctor we saw when we went for our regular clinical visit and was wonderful.) She reviewed the actual slides of Mike’s CT scan and was very pleased with how well he is doing. She thinks he is an excellent candidate for the Avastin, but she said it’s too risky for him to take it while he’s getting the radiation. Mike’s last radiation treatment is scheduled for March 24, but the radiation still has an effect even after the treatment is finished, so I’m not sure exactly when he will begin taking it. Avastin is taken only once every two or three weeks (depending on what the doctors decide is best). When we were at Duke, Dr. Desjardins told us it begins shrinking the tumor within 24 hours, though patients usually can’t tell a difference in how they feel for at least a week or two. In case you don’t remember, in 65% percent of patients who have taken Avastin, the tumor decreased in size by half. The other 35% had their tumors shrink by 20%-25%.

Thursday Update

I talked with the doctor this morning, and he went ahead and ordered another dose of the Mannitol for Mike today. He said the swelling in Mike’s hands is from the steroids; his face may become puffy as well. His blood pressure and heart rate are now under control. When I asked Mike my name this morning, he said some crazy name, but when I asked him the name of his wife, he gave that same answer. I’ve asked him my name since then, but he doesn’t give a response. When I held up pictures of the girls, he was able to tell me their names and that they’re his daughters, so that was good. The doctor said I shouldn’t be too concerned about Mike’s dip because it is bound to happen. Mike did eat all of his breakfast, but it felt like it took forever for him to eat. There has been no word from Duke yet; the doctor is going to call up there today to try and nudge them a little. I will certainly post whenever I find out something.

There was no magic with my cell phone this morning…it actually had a setback and wouldn’t turn on at all again!

Thanks once again for all of your prayers. Please continue to pray for Mike and that this is just a minor setback he is having as well as that we’ll get the go ahead to take the Avastin from the doctors at Duke.

Birthday Boy

Wow!!! I wasn’t expecting such an overwhelming response for the birthday wishes and stories. Thank you so much for sharing! I knew some of the tales, but I learned some new “war stories” as well. I finished reading Mike all of the posts today—there were so many I couldn’t get through them yesterday! Mike had a good birthday. The girls finally got over the “crud” and were able to come for a visit; Ava sat on the bed with Mike for quite some time. Thanks to Fran, Regina, Cindy, Harry, and my parents, Mike ended up with quite a feast for lunch and dinner. He got a break from the hospital food and was able to dine on homemade barbeque, broccoli and cheese soup, beans, steamed broccoli, and banana pudding. And of course, there was birthday cake. There was so much food, Mike’s Uncle Gene had to bring me a cooler today so we wouldn’t take up too much room in the refrigerator. (It plugs into an outlet, so I don't even have to use any ice!) They only allow items to be kept in the fridge for two days around here, and there’s no way all that food would be gone by the Thursday. I think Mike is becoming a favorite on the 8th floor—the nurses and staff brought him a beautiful arrangement of tulips for his big day!

Mike is over half way through with his radiation and chemotherapy. He has thirteen treatments left. His heart rate and blood pressure got to be pretty high today, and he ended up having an EKG to make sure everything was okay. Things didn’t look too bad, but they did give him some sort of patch to help bring them down to a more normal level. Other than that, Mike was doing pretty well today, but he didn’t seem to be doing as well after waking him for dinner. He was having some trouble eating at dinner, at times it was taking him longer than normal to chew, and he didn’t eat as much as he normally does. Having a good appetite is one of the things the doctor has been keeping an eye on. His breathing was a little shallow, so respiratory therapy came in to do a breathing treatment. I quizzed him a little later, and he didn’t know who I was. That’s one he hasn’t gotten wrong since he was out of it from his biopsy. The on-call doctor was called and Mike is getting another dose of the Mannitol tonight. I’ll talk with our regular doctor about everything in the morning.

The doctors at Duke received copies of Mike’s latest CT scan reports, but they wanted to review the film for themselves. It was Fed-Exed to them yesterday, so hopefully, we’ll have their feedback by the end of the week about the possibility of starting with the Avastin.

Here’s your comic relief for today (at my expense): This afternoon Mike had that look that people have when they’re going to vomit, so I rushed in the bathroom to grab one of the plastic pink tubs to use to prevent him from getting it all over himself. I thought I heard something fall in the toilet, but I didn’t pay too much attention to it because I was trying to get back to Mike. I moved the bed to a 90 degree angle, and it ended up Mike only had to belch. (And it was quite a belch!) A few minutes later, I went back to see what fell in the toilet, and it was my cell phone. Arrggh!!! So, if you’ve left me message since about noon on Wednesday, I haven’t gotten it. I’ll be using my old phone for the next day or two until I can get to SunCom to figure out what to do with my newer one. On the bright side, the phone would at least turn on this evening—that’s more than it was doing this afternoon. It now gives me the message to insert the SIM card. Maybe it’ll just magically work in the morning. A girl can dream, can’t she?!

Share a Story

Mike’s birthday is tomorrow, and I’ve come up with an idea. (I hope this one turns out better than my Lizard’s Thicket debacle on Saturday night.) Since it’s obviously not feasible to have a big birthday bash—if we were in the Marriot part of the hospital, I might be able to pull it off, but there’s just not enough room on the Motel 6 end—I thought you all could send some virtual birthday wishes to Mike through the blog, and I will read them to him tomorrow. Those of you who know Mike could maybe share a favorite memory or something you’ve learned from him. (You ATO guys be careful in your stories—our children will read this one day!) This will also be a great way for those of you who don’t personally know Mike to learn a little more about him.

Just to get the ball rolling, I’ll share a little story myself. When Mike and I became engaged in July of 2000, he hid the ring and made me hunt for it. We had already talked about going to Jamaica on our honeymoon, so he decided that the tier of room we stayed in would be determined by how long it took me to find the ring. Every 15 minutes that passed would constitute a drop in quality. Mike was enjoying my suffering (and saving money as the minutes passed), but after 25 minutes I gave up because I knew with him that I would never find the prize. The depressing part is that I was darn close to finding it in the first five minutes. The problem was I thought he would at least have the ring in a box, but he didn’t. It was hidden in his suit pocket hanging in the closet. Believe or not, I did look there! On the bright side, Mike decided not to skimp on the honeymoon. Being one who does not like to accrue any debt, he actually delivered telephone books to finance our excursion.

Now it’s your turn! If you’re writing something that’s more than a sentence or two, here’s a helpful hint: type your writing in a Word document then copy and paste it to the Blogger comment box. That way if the comment disappears, you still have it in Word and can try again without having to type everything over.I’ve had a couple of experiences of typing in Blogger then had it vanish into cyberspace once I clicked “publish.” I’m telling ya, it’s a depressing feeling to have your composition evaporate. You don't have to share a story...you can just send birthday wishes if you want.

Lung Caper

I try to get a little more sleep on the weekends since the doctors don’t come in at the crack of dawn, Mike doesn’t have radiation, and I don’t have to fight the traffic going through Malfunction Junction. I guess since I came in a little later yesterday, Mike was going to make sure I stayed later as well. He ended up getting his chemotherapy late. He’s supposed to get it between 4:00 and 5:00, but he didn’t get it until 5:40. (At 5:00 I called the front desk to remind them he needs it by 5:15.) As I’ve mentioned before, this creates a problem with dinner because Mike can’t eat for two hours afterwards and the cafeteria closes at 7:00. Sure, there’s a microwave on the floor, but who wants reheated hospital food??? So I had the brilliant idea to get him some Lizard’s Thicket. After dinner Mike was coughing pretty badly and breathing hard. When the nurse came in to check him, she heard something a little odd in his lower right lung. Because he seemed to be breathing so hard, she went ahead and hooked him up to the oxygen. This seemed to help his breathing, but they went ahead and did an x-ray on his chest. There was some concern that perhaps he had swallowed something wrong and it had gotten into his lungs, which could cause pneumonia. To protect the innocent, I won’t mention the name of the person who fed Mike dinner since she was feeding him so that I could go downstairs and spend a little time with Ava. But in case it’s getting the best of you, her name rhymes with flair. My brilliant idea was beginning to not seem so brilliant at that point. I mean Lizard’s Thicket is good and all, but it’s not literally to die for. Luckily, the x-ray came back fine and showed nothing in his lungs. Whew! "Flair" and I ended up staying at the hospital until 12:30 last night waiting on the results and making sure everything was okay.

I did talk with the on-call doctor today about the CT scan. Not including the swelling, the tumor is pretty much the same as it was last weekend. She said that a CT scan is just a two-dimensional reading and isn’t necessarily accurate to the millimeter. Transverse dimension means from left to right, and AP dimension means from front to back. She also said that how we physically see Mike doing is a better indicator of his status than the scans.

Other than that, Mike’s pretty much been the same today. If he’s awake, he’ll sit up and talk with you. Just don’t anticipate any factual information from him. This evening he said we have been married a hundred years. Surely nearly seven years with me doesn’t feel like one hundred!

CT Scan

When I came in this morning, Mike’s eyes seemed okay, but he was still inaccurate with answers to questions. He initially said we have twelve children (Yikes!!! How could we ever afford that? Two cost enough as it is!) When I told him we had two, he couldn’t tell me the names of our girls, but when I held up pictures of them, he could say their names. The on-call doctor was present when I was giving Mike his quiz. Since he didn’t make an A+, she went ahead and ordered another CT scan as well as two doses of the Mannitol for today. Mike had his CT scan shortly after 11:00, and the doctor brought the report to me a couple of hours later. She said that the tumor was stable, so we were just going to keep on doing what we have been. After she left, I started looking at the report in more detail, and it doesn’t look so great to me. It does state that the tumor is “largely stable” and there is no additional hemorrhaging, but the mass—including the swelling—has a “maximal transverse dimension of approximately 6.8 cm and a maximal AP dimension of approximately 5.3 cm.” I don’t know what exactly “maximal transverse” and “AP” dimensions mean; when I went to ask the doctor for clarification, she had already left. The last report just used the term “diameter.” I’m not sure just what the difference is or if there is one; I’ll ask her about it in the morning. It’s been nearly four hours since the doctor put in the order for the Mannitol, and it has yet to make it up here from pharmacy. I realize the pharmacy has to serve the entire hospital, but I don’t think I’ll ever understand why it takes so long to get medication around here. It’s a hospital, for cryin’ out loud!