Round 5 of Chemo is finally complete!

We’re creatures of habit. Even if we know that a certain activity does nothing for us, we continue doing it anyway. And we tend not to look for alternatives.

It’s a lot easier to do the same thing day after day, but do we ever ask ourselves why we do it? Why do we do the same things over and over? For example, how many of you have a morning “routine”…afraid you will forget something if you do it out of order? Been there, doing that!

If I have to do something that’s not part of the usual routine, I may forget something else (such as putting on deodorant or putting on jewelry). Messes my whole day up. I’ve noticed that my boys are the same way. If they have to “think” about doing something that is not a part of their normal routine, it will not get done. (or it will get done and something else will not!)

Similar thing happened at the end of last week. Harold started round 5 of his chemotherapy. We expected Day 1 & Day 2 to be normal nights. We expected Day 3 to be bad and Days 4 & 5 to be even worse. However, Day 3 for Harold started out worse than usual (and out of our normal chemo routine). He woke up and took the boys to school. Then immediately went back home to go to bed. He was nauseous. Extremely. And it lasted until Sunday! It was so bad that he stayed in the bed from Friday to Sunday. He would get up every 4 hours; long enough to get a drink and take another Zofran. He didn’t take his last dose of chemo on Saturday night. He said that he was afraid that he wouldn’t be able to keep it down.

Sunday morning, I called the on-call Neuro-Oncologist at Duke. I couldn’t stand to see him that way. Turns out that the Zofran just quit working for him. He was taking it every 4 hours and it wasn’t even touching his nausea. The doctor suggested that he try phenergen and that it works in a different way than Zofran. Harold’s Dad brought him some and he took it around 2pm on Sunday. Within an hour, he was able to eat something and said he felt 110% better. When Harold’s doctor emailed me late Sunday night to check on him, she wanted Harold to try to take his last dose of chemo. But we didn’t get the email until Monday morning. So, Harold finished his last dose Monday night…two nights later than scheduled.

We were so used to the Zofran working for Harold, but not used to him staying in the bed for 2 or more days. It really messed up our routine. Don't get me wrong...we realize that it could have been worse. It definitely made us realize that we cannot expect each month’s dose to be exactly the same. We need to break the habit of expecting things to go just as planned. 5 rounds of chemo are complete with 7 more to go...

FYI - I’m working on a new blog website. I’m bored with the plain-jane Blogger templates and I’ve found a better host. I’m spending my spare time learning the new site, instead of updating this one. As soon as it’s ready, I will let you know. The new one will be more ‘private’, only available for those receive the ‘invite’. So, if you read the blog, be sure to email me with your email address so I can add you to the list. ksublett@nc.rr.com

Hope everyone has a safe, yet fun, holiday weekend. We have lots to do...as usual. Just hope it goes as “planned”.

Hunter's Blog

Yes, Hunter now has a blog. He asked me about mine...I guess he's heard us all talking about it. When I showed it to him, I told him it was similiar to a diary or journal. And that by putting things down on paper (or typing into a blog entry), it relieves my mind and I actually feel better.

So, I told him that he could write about whatever he wants to write about. And so the saga begins... http://hlovick.blogspot.com

Please post comments....he loves them! I'm not sure how often he will post, but I'm glad he's deciding to give it a try.

Who knows, he may write better than I do! :)

Update on my Ear

I had a follow-up with my doctor's nurse yesterday in Raleigh. I thought I was going to have stitches pulled out, so I made my mom ride with me. (just in case my knees buckled and I wasn't able to drive home!). Turns out, I have stitches...but they are on the inside.

So, when Margaret ripped off my steri-strips, I thought I was going to crawl up the wall. Then, that was it. That's the only reason I drove up there. She can't look inside my ear to check on things because of the packing.

I asked for explanation of what Dr. McElveen really did, because I hadn't known before now. Harold just told me "he fixed it". That's all I had to go by until yesterday.

Turns out, that I did have a cholesteatoma behind my eardrum. Hence the reason he had to cut me open behind my ear. This cyst was very small and they feel certain that all of it was removed and shouldn't come back. Margaret said it was caused by my eardrum laying on top of something else. My eardrum was sucked inwards due to the hole and my eustachian tube doesn't work properly...never has for that matter.

Here's some interesting information provided to me:

• A cholesteatoma is a benign growth of skin in an abnormal location such as the middle ear or petrous apex.
• It can form from an improperly functioning eustachian tube.

The eustachian tube is a canal which connects the middle ear to the back of the nose. It is responsible for equilibrating middle ear pressure to the pressure in the external environment. This tube is normally collapsed in its resting state and when we swallow or yawn, the muscles around the tube contract and cause the tube to open allowing the influx of air into the middle ear space. When this tube does not work appropriately, a relative negative middle ear pressure is generated and maintained. Over time the intact eardrum begins to retract back toward the inner ear. Eventually a skin-lined sac forms which continues to grow and cause infection and bony destruction.

Because I have a 'stapes' prosthetic, he had to go in behind my ear to be sure that it was still working properly. And thank goodness it was! Dr. McElveen removed alot of calcification within my ear and then put some cartilage under my eardrum to support it and prevent it from falling inward again.

All in all, I am pleased with my surgery. Besides a few bumps in the last week, it has been a good experience. Now, once that packing is out of my ear and I can actually hear normal, I'll go back to Raleigh for another hearing test. Hopefully, it has improved too!

I recommend Dr. McElveen to anyone with ear troubles...he is also Duke affiliated.

http://www.carolinaear.com/

P.S. - Hunter made an A+ on his castle! Yippee!! We rock! They studied all about the Knights and Midevil Times and they did a reinactment of a play (that I missed because I was in Raleigh) yesterday. Hunter's "Knight" name was Sir Query (teacher said because he asked so many questions!) Wonder where he gets that? hmmm...

Harold's MRI Comparisons

Just for kicks, I decided to make a side-by-side comparison of Harold's MRIs. I thought I had a copy of the MRI just after his surgery, but I couldn't find it. When I do, I will add it to the picture sequence.

The picture on the left is the Sept 12th MRI. The MRI that built the foundation for this entire journey. That 1-inch black, smokey circle is (was) the Beast. I tried to point it out with the yellow line. It's just on the right side of the line.

The picture on the right is the most recent MRI from April. This is after 6 weeks of radiation and 4 rounds of chemotherapy. You will notice that the black smokey circle is GONE! Amazing! Click on the picture above to view it larger. Check out his nose and eyes!

It's been a L-O-N-G Week!

I slept most of the weekend away and tried to play catchup on housework on Sunday. I've been having some sharp shooting pains in my ear. I'm guessing that it's the nerves healing themselves, but sometimes they really take my breath away. I can feel the packing inside my ear too. Unfortunately, it'll be there until I start my ear drops on June 3rd. I can't believe it will be in there almost a month. Yuck! It also hurts to open my mouth all the way. It feels like it is going to rip off my ear when I try.

Harold babied me on Mother's Day...that was nice. I got McDonalds for breakfast! yum! And they surprised me with a gift certificate for a manicure and pedicure. Now, I just need to find the time to get that done! On Monday and Tuesday, Harold took the boys to school and then drove me to work. I'm glad he did. I'm sure I would have been fine, but I was still uneasy turning my head too fast. Harold says that I don't pay much attention in the car on a normal day!

On Friday morning, I have my surgery follow-up appointment in Raleigh. I think they will take the stitches out; I sure hope I don't feel it!

On to other news:

Harold started Round 5 of chemo last night. His platelets last week were at 125 and this week, they were at 102. Just barely made the cutoff. He tolerated it well last night. He always does on the first 1-2 nights, then the nausea kicks in around night 3.

As for the boys, they have been busy: BASEBALL, BASEBALL, BASEBALL!

My Surgery

I may have to update this blog several times because I don't remember everything. Harold & I got to Raleigh around 4pm Tuesday. And boy am I glad we did! We had the most terrible thunderstorms and tornadoes all around us. We went to Crabtree Valley Mall to get a bite to eat around 5pm and headed back to the hotel around 6pm. That's when the storms got really bad.

The mall was really nice. I've never been to that mall. They had a huge sand sculpture for the Carolina Hurricanes. It was amazing and very detailed. I hope to go back up to the mall to look around.


We arrived at Rex Hospital at 7am so that I could get registered and then to the pre-op room. Once they gave me a valium shot in my hip, I was ready to go. I remember the operating room being VERY cold and I told them I was in a Grey's Anatomy episode! Everyone was so nice. The last I remember is the mask being placed over my nose and mouth. They told Harold that my surgery would take 2 to 2.5 hours. When I woke up, my throat hurt SOOOO bad. Apparently, they have to put this tube down your throat during surgery. My throat hurt worse than my ear.

I had my head wrapped up until early Thursday morning. I don't know exactly what Dr. McElveen did during surgery. I just know that he repaired my eardrum and scraped more calcium out of my inner ear. So, as of today, I don't have any details. Hopefully, when his nurse calls today, I can ask her what he did. If not, I'll ask next Friday when I go up for a follow-up appointment. I don't know if he cut me open behind my ear and went in that way or if he went in through my ear canal. I thought he was going in through my ear canal, but I have a bandage behind my ear and it's extremely tender. I know he was going to skin graff from behind my ear, so maybe that is what hurts so bad. But it feels like there are stitches back there. So, I don't know!

I felt okay yesterday. I was discharged from the hospital around 10am. The drive home made me a little nauseous. I thought my vertigo was going to be really bad from the surgery. But, knock on wood, so far I haven't had any problems with it. My only complaint is the pain. I can't hear out of my ear...there's a bunch of packing inside my ear and it's swollen.

When the boys came home last night, Holden was looking at me as if I was a science project. I don't remember too much. But I remember Hunter rubbing my arm and telling me that he hopes I feel better soon.




I definitely don't feel well today. The pain is worse and I hope tomorrow is better.

Oh and I have to tell you about the phone call from WTVD! Apparently, I won an all-expense paid trip to Los Angeles along with tickets to the final taping of Dancing with the Stars!! Can you believe it!!?? I couldn't! I was ecstatic and then very upset. The taping is next weekend! And I can't fly for 4-6 weeks! Just my luck! I'll probably never have that opportunity again. Gosh, that would have been awesome. I would have left on Friday and came back on Monday. If I had known about that before my surgery, I would have postponed my surgery just to go to that! Unbelievable! I had to forfeit the Grand Prize! Bummer... But they switched me to the 2nd place winner for the contest, which includes an autographed poster, a CD and dance lessons.

Oh well, I did win a trip for 4 to Virginia Beach, VA. 4 days, 3 nights that include meals, tickets to the aquarium and some other stuff. I am hoping to pick up that prize package next Friday when I go back to Raleigh. I've always wanted to go to VA beach too! And my family definitely needs a vacation. What's better than a free one!!

I really need to play the lottery....but I figured I'm too young. You never hear of young families winning the lottery though.

I'll post again later, if I think of anything I may have forgotten. I hope everyone has a great weekend!

Brain Tumor Awareness Month

According to the American Brain Tumor Association and the North American Brain Tumor Coalition, May is Brain Tumor Awareness Month.

I'll be wearing a satin Gray Ribbon every day this month in hopes of boosting brain tumor awareness. I have about 20 more ribbons. If you'd like one, just let me know.

BrainTrust.org explains additional reasons on why to wear these ribbons:

• More than 195,000 Brain Tumors are diagnosed in the United States and Canada each year.
• Brain Tumors are the leading cause of cancer death of children under 20.
• Brain Tumors and Brain Injury can happen to anyone, anytime.
• More research funding is needed to find successful treatments for brain tumors.
• More support services are needed for brain tumor patients during and after their diagnosis.
• Rehabilitiation for cognitive disabilities is not available to all the patients who need it.
• Causes of brain tumors must be identified, so the brain tumor threat can be eliminated.
• Many People don't understand disability from brain tumors or brain injury because you can't "see" it.

We need more brain tumor advocates in our own community. What does it mean to be an advocate? All the information you need is on this website: http://www.nabraintumor.org/advocate.html

Help us fight this beast! I don't want my kids to grow up with the worry of cancer.

Monday

I thought today went really well. We left early so that we could get to my appt early, with hopes of being seen quicker. My appt was at 11:30, but we got there at 10:15am. I was called back for my hearing test first, which as expected wasn't good. Harold was in the sound-proof booth with me while I was pushing the button for all of the various sounds. These hearing tests really annoy me. I've never had good results, so I guess I always expect the worst. When I start to hear the beeps, I psyche myself into thinking I am still hearing the beeps. So, then I end up hitting the button more than I need to. I actually think there's some kind of pattern to when the beeps will sound and I try to figure it out. Don't try it...Never works!

When I got back in with my doctor (after 11:30am), he asked me how I was doing. I told him I was "nervous". He said if I wasn't nervous, he'd be worried. I told him about how my vertigo has been bad lately. Some times I can just turn my head to look and I get so dizzy. He said something about "crystals" may have fallen inside....I don't know what that means and I didn't ask for more explanation. I trust him to get it all fixed on Wednesday.

Anyhow, my surgery is still on schedule for 9am Wednesday and we are leaving around 3pm tomorrow to head up to Raleigh and get settled. We have to be at Rex Hospital at 7am for admission. The nurse said I would be discharged just after breakfast on Thursday! Thank goodness! Just a couple more days and this will be over with.

We made it to Harold's appt by 1pm. He saw Dr. Reardon for the first time. He's another neuro-oncologist in the Duke Clinic. He just works on Mondays and we've never been on a Monday. They were thrilled with his MRI. No new growth and no new tumors. They said that he will always have a small "black spot" on his MRIs because of the good brain tissue that was removed from surgery. And they said that he will always have mild swelling in that area..."always" as in forever. We can handle that, if that's the worse case scenario! The good news is that we don't have to go back up there in 2 months. He'll have his normal 2-month MRI and we will Fedex the CD to them to review. Then 2 months later, he'll have another MRI and we will have to drive up there. So, no Duke trip for 4 months!! Yahoo!!

We talked alot about his medicines. He's not gaining any weight...he weighed 135.9 today at the Clinic. Before all of this happened last Sept, he was right at 160lbs! So, they are increasing his trial medicine. In fact, they are doubling it. It's supposed to increase his appetite. I also asked about his seizure medicine, Keppra. Keppra had a generic medicine come out last November. However, we haven't tried the generic. I've been skeptical about it. I've asked on the brain tumor message boards and I've gotten a mixture of responses. However, Duke put it into perspective for us. They said Absolutely Not for the generic Keppra. They have had some patients where the pharmacies switched it to the generic and they ended up having a seizure. We are not going to rock that boat with Harold. I'd much rather pay extra, just for the extra security!

We left Duke with 8 prescriptions!! Wow! 1 for lab work, 2 for MRIs (2 months and 4 months), 1 for chemo next week, and the rest were his normal medicines.

Oh...and I almost forgot. Harold's hair is growing back a different color! I just noticed it Saturday. Those spots where he lost his hair is growing back very dark! I shouldn't have told him about it, now he's self-conscious about it!

Hunter finally finished his castle yesterday. I'm going to help him carry it to his classroom in the morning. I have so much to do tomorrow to get ready for the week. Since I don't know how I'm going to be feeling, I need to prepare for everything.

Busy, Busy Week

We’ve been super busy this last week. Harold went to Florida last Friday to Tarpon fish. He didn’t catch any Tarpon, but did catch some of these perty things…I think he called them Permit.

He was a little nauseous fishing on Saturday…probably more than he will admit. He didn’t go with the crew on Sunday, but he did fish a half-day on Monday before they headed back home. I sure missed him while he was gone. I stayed busy with the boys…they had ball games and I got some spring-cleaning done. Holden is mad at me because I re-arranged his bedroom. Every night when I put him to bed, he tells me that he wants his bed back on the other side of the room “because he’s scared of the window”. Every night, I have to tell him he is a big boy now and need a big boy room. He’s just not buying it.

I got a wild hair and decided to dye my own hair over the weekend too. I thought it was going to be brown all over…but it turned out VERY dark brown. Almost black. I didn’t tell Harold that my hair was a blue-ish color afterwards either, but he’ll soon find out after reading this! I had to call my hairdresser, Wendy, and beg her to fix it. She just laughed at me. Therefore, it’s not blue or gray or green any more, just dark brown. I’m starting to get used to it. Harold said, “it’s not that bad”….which equates to “I’m not crazy about it”. Oh well, you live and you learn…or atleast I always do things the hard way!

Hunter had Field Day at school this week. He got soaking wet too…now I see why they ask that they bring a change of clothes. He had a lot of fun. We have to finish his castle this weekend. He had to build a castle for AIG class. It is turning out good. I hope that I, uh, he gets a good grade on it. I’ll take a picture of it when we are finished.

Harold had his MRI done this past Wednesday. He brought the CD to me after he was finished and I popped it in my computer. You know, because I’m a “certified” doctor now. Haha.

We immediately noticed that there wasn’t anything left of that black hole. I teared up and could tell that Harold was excited. Once again, the more that “hole” closes up, the more that the cancer cells are dying. If the hole wasn’t closing up, that would be a good indicator that cancer cells are thriving and prevent the good cells from healing his brain. Yahoo!!

Now, we wait until we go to Duke on Monday to get their interpretation. After all, their opinions are the ones that count!

Here’s a “sample” of our calendar of events coming up. All of this has caused my OCD to bump up a notch or three! Is there medication to help with anal-retentive behavior?? (Ahem…I prefer to be called “meticulous”…sounds more impressive) I know I drive Harold and everyone crazy. Harold has even pointed out some of my quirks! However, I can’t help it.

Anyhow, enough about what goes on in my crazy head…

• Monday – I have my pre-op appt at my ear doctor at 11:30am in Raleigh. I will have a hearing test done and probably another checkup. Then at 1pm, we head over to Duke Clinic for Harold’s appt to review his MRI and talk about his overall health.
• Tuesday – Harold has blood work done and then an appt with the orthopedic again. He has a possible bone spur on the heel of his foot. It hurts when he walks. He had trouble with another spot last summer, but it was in the arch of his foot and doesn’t bother him as much. They opted for the “let’s watch it” treatment plan. This pain is on the same foot. Then, Hunter has a therapy appt late that morning, and we will head up to Raleigh late that afternoon.
• Wednesday – As of today, my surgery is scheduled for 9am at Rex Hospital, but I have to be there at 7am. I will stay in the hospital until Thursday. Bummer…I am going to be better by Sunday though…it’s Mommy’s Day!

In between all of these events, I have a massive To-Do list that I hope to complete this weekend with the help of my ever-loving hubby! <== ulterior motive embedded in this sentence

Did I mention that I'm on vacation next week? As if!