Wednesday, April 29, 2009

April 29

Hi,

I just came home from the hospital for a few hours while Denny naps. The doctor is trying a new strategy for pain management. Den will get a longer lasting form of morphine twice each day. The doctor hopes that this will eliminate any breakthrough pain and possibly that nerve will heal. She also wants one of the pain doctors to come to see him yet today or sometime tomorrow.

The physical therapist did work with Denny today. I wasn't there, but the nurses said he was using a walker and doing much better than yesterday. He's still having trouble getting some words out, but the nurses also felt that he's articulating better in general. So, maybe we're headed in the right direction.

The doctor expects to transfer Den to the sub-acute unit either tomorrow or Friday.
That was a major relief to me, as I was concerned that he'd have to go to a nursing home for rehab this time. Neither of us is ready for that.

On another subject, the Sole Burner O TEAM is up to nearly 70 people and Amanda said she has a pile of checks for the American Cancer Society. Thank you, everyone, for this touching show of support. You have all been so wonderful.

Have a good evening. I'm going back up to the hospital and I'll make Denny watch American Idol with me. It's my brain that doesn't want to deal with anything deeper than that!

Love,
Carla

Tuesday, April 28, 2009

April 28

Hi,

The neurologist told me tonight to give it another day or two, but so far the pain injection Den had yesterday hasn't had the effect we had hoped for. The pain tonight was terrible, so they gave him a double dose of morphine. He's still having some confusion but until the pain is under control that will continue. He's as "down" as I've seen him and it breaks my heart that I can't do anything to make him feel better.

I wish I could add something positive, but unless you count Denny's appetite as still being just fine, there's not much to say. I just called his nurse to see how he is and she assured me that he was still sleeping soundly, so it's probably time for me to stop worrying (not too likely!) and get some sleep as well.

Thanks for all the support.
Love,
Carla

Monday, April 27, 2009

April 27

Hi,

I'm home for a couple of hours while Denny sleeps. He had the nerve block injection this morning, which I thought would give instant relief, but I guess it can take a while to actually affect the nerve. The procedure could be a one time thing, or it may have to be repeated--who knows?

His anti-seizure medicine has been raised, which was expected, and today they've added yet another pill to his ever-growing list of medications. The irregular heartbeat they said not to worry about now needs a beta blocker. The bad part about that for Denny is that it could lower his already too low blood pressure. I suppose there are more things that could go wrong, but I'm really praying that God will agree that Den's been tested enough.

It looks like he'll be at St. E's for a while. At some point they will transfer him to the sub-acute unit for rehab, much like he went through in December. Hopefully his recovery time won't be as long this time around.

Keep praying!
Love,
Carla

Sunday, April 26, 2009

April 26

Hi, everyone,

Things are a little better today. Denny's communication skills seem to be improving and his memory also seems a little better. Shannon, Ryan, Keira, Dave, and I were there at the same time this morning and he interacted with each of us. It was especially good to see him talk to and be interested in the little ones. He had a good lunch and stayed awake for three hours. As soon as he gets the morphine, though, it's back to sleep.

While everyone was there, Jim Richter stopped by so we all had a chance to ask questions about seizures, the medicine Den's being given, etc. Dr. Richter is so patient, kind, and calming. I am glad that Shannon and Dave were able to meet him; Chip had that opportunity when Jim came to our home to evaluate Denny's facial pain.
I always feel just a little bit more hopeful after talking with Jim.

Tomorrow Denny is scheduled to have an injection that will block the pain coming from the nerve in his face that was attacked by the shingles virus. Assuming that it works, he shouldn't need the morphine anymore. Then we can start the rehabilitation process again. I'm sure someone will be letting me know what those options will be.

Right now it's just one day at a time. Hopefully, tomorrow will be even better.

I hope you are having a relaxing Sunday. What a great day to read a book and/or take a nap. Take care.

Love,
Carla

Friday, April 24, 2009

April 24

Hi,

It's been quite a day, but we learned a lot and are hopeful that things will get better. I know all of the positive thoughts and prayers must have helped.

The good news is that the CAT scan showed no bleeding going on in Denny's brain. The MRI shows that the tumor is still stable and there is no change since November. These two positive results make the rest seem not so bad because they are treatable.

Our day started at the pain clinic. The doctor there explained that the shingles virus actually destroys the sheath that surrounds a nerve, making the pain so unbearable. Denny is still having a lot of pain in his right cheek and jaw area, so the recommendation is to numb those nerves by injections. That will be done on Monday morning. Until then the pain will be controlled with morphine.

Next, he had an EEG to investigate the seizure activity. The neurologist read the test and came to tell us that there is significant spikes on the left side of the brain, which is contributing to Denny's speech and processing abilities. The doctor seemed confident that these problems will reverse themselves over a relatively short period of time. Den has already had his first dose of the anti-seizure medicine.

They repeated the EKG done yesterday and confirmed that Denny has a slight irregular heartbeat, but that is only going to be monitored for now.

Late this afternoon Denny's temperature was a little high, so another chest X-ray was ordered and the doctor started him on an antibiotic right away because she suspects the pneumonia is coming back. That's very possible since he's had so little activity the past couple of weeks.

So, if all goes right, there should be no need for pain meds and the anti-seizure medicine might even help the fatigue. That's just a wild hope, but the chronic tiredness is still the mystery to all of the medical personnel because Den is still taking a pretty big dose of steroids.

I left him sleeping soundly and with a couple of Tylenol PM's I plan to do the same.
I hope you all have a wonderful weekend! Good night!

Love,
Carla

Thursday, April 23, 2009

April 23

Hi,
Just a quick note to let you know that Denny is back in the hospital. He had what I believe was a seizure this afternoon, prompting me to call 911 when he was unresponsive. We spent a few hours in the ER while they ran preliminary tests, but then admitted him after they did an MRI. Tomorrow he will have a neurological evaluation, and will also see an endocrinologist as well as a doctor from the pain clinic. Needless to say, it was a hectic day. Right now I am just happy that he is safe and resting comfortably at St. E's.

Please keep him in your prayers; he's been through so much. I'll update this as we learn what the tests show.

Love,
Carla

Wednesday, April 22, 2009

April 22

Hi to all,

Another week, another medical report. We saw Dr. Meena today, who reported that all of Denny's blood work is perfect, which is a little surprising since he just finished a tough round of chemo and is still taking medicine for pneumonia. The nerve pain in his face is still very bad sometimes, but we have everything from pain patches to morphine to deal with that. Next week we are going to see a pain specialist, who, I hope, will have something other than oral medications to deal with this. The Tegretol takes care of the pain, but it leaves Denny weak, fatigued (even more than usual,) and somewhat confused.

We are going to make another slight adjustment to the steroid intake, now going down to 5 mg. per day. In all likelihood he will have to stay on these to keep the brain swelling from the tumor under control, but less is better, if possible. We will get another look at that tumor after the next five days of chemo next month. So far it's just staying put, which is the good news in all of this. Oh, and the other good news is that it appears that all of the blood clots in Den's legs have dissolved. So when he does get enough strength to get back to exercising, it should be more comfortable for him. He was carrying about 16 pounds of water around in those swollen legs!

Thanks, again, for connecting via the blog. We surely appreciate your comments and e-mails!

Love,
Carla

So, that's it for today.

Saturday, April 18, 2009

April 18

Hi,

I hope this finds all of you enjoying the warm temperatures and the hint of spring.
We are having some work done here, so my job all week is to stay one closet ahead of the new doors being installed. So far I've taken loads to Community Clothes Closet, Harbour House, the Emergency Homeless Shelter, and Goodwill. I'm making an attempt, at least, to put our packratting days behind us. I probably should have gotten rid of double the amount I did, but that could cause a real shock to my system.

Denny is midway through this round of chemo and will see the doctor again on Wednesday. The new blood work ordered by Jim Richter showed nothing abnormal, so his wings are on hold. Tapering him off the new oral medicine for the trigeminal neurolgia is what we are now trying to do, because even the tiniest bit causes major confusion and increased weakness and dizziness. It's been a really rough couple of weeks for Den. I guess the good thing is that he doesn't seem to remember any of it from day to day.

There is a team in the upcoming Sole Burner Run (American Cancer Society)who will run in Denny's name. If any of you are interested, it's on May 9th and information for participation and/or donations can be found on-line. The Xavier mom who is responsible for organizing all of this for the O-TEAM (team name) is Amanda Lauer. This is just another example of the wonderful support we have received from the ACESXavier community. Her address is 1113 N. Hawthorne Dr, 54915, and her telephone number is 739-5717. All proceeds from the Sole Burner go directly to the American Cancer Society. Hopefully the day will come when we won't have to watch those we love suffer from this horrible disease. Right now prayers and donations for research is all we have to fight with.

Unless something happens, I'll write again next week after we see Dr. Meena. Always know that we are grateful for every prayer and thought sent our way.

Love,
Carla

Monday, April 13, 2009

April 14

Hi,

It seems odd to be writing at this time of day (10:00 a.m.) I am somewhat of a night owl and usually do this toward the end of my day. But, we are on vacation this week, with no place to go except to doctor appointments, and writing beats ironing any day of the week, so here's the latest update.

It seems that now Denny has a combination of both types of pain--post herpetic neuralgia and trigeminal neuralgia. That's the latest conclusion since the horrible sharp pains are gone but for the last two days he has a very sensitve reaction and a constant moderate pain across his face and into his head on the left side. That points back to the post-shingles pain and he has been completely weaned from that drug. We saw Drs. Meena and Richter yesterday and everyone is a bit baffled. New meds have been ordered and we will try to get this managed.

Let's add to everything the slight, loose cough that Den's had for about four days.
An X-ray showed that he has "early-evolving" pneumonia. More antiobiotics. Then tomorrow he will begin his sixth round of chemotherapy. He usually has no adverse reaction to that, so since it has been delayed so long we are both glad to get that underway, hoping that the tumor hasn't changed since the last MRI.

All in all, I'm glad that this is all happening while I am here full time with him.
I don't go back to work until next Tuesday, so by then things should be better. Dr. Richter is also investigating other reasons for Denny's chronic fatigue. I believe an answer to that could lead to resolving some of the other issues. I've been conveniently blaming the steroids for everything, but Jim doesn't think they are the source. I will personally make him his own set of angel wings if he can get to the bottom of the fatigue/sleeping issue. (Those of you who know me well realize that those wings will be made with a hot glue gun, but hey, wings are wings!)

I'll check in again by the end of the week. Now I will go look for another excuse not to iron.

Love,
Carla

Tuesday, April 7, 2009

April 7

Hi!

It's been 24 hours since Denny has experienced the horrendous pain he had been having, so I am pretty confident in sharing the news and how it came to be.

After being treated for post herpetic neuralgia for a week and getting absolutely no relief from taking the drug, Gabapentin, commonly given for that diagnosis, we had a guardian angel take over. You might remember my story of how Denny got a bed long enough for him when he was in the hospital last December. It was all because our friend and Den's family doctor, Jim Richter, went to bat to get a bed that actually fit Denny. This past Saturday morning our phone rang and it was Jim Richter, calling as a result of his wife reading the blog (thanks, Laurie!!) After listening to my description of what Den was going through, Dr. Richter told me that he believed Denny was being treated for the wrong nerve condition. A couple of hours later, he was at our house with articles written in layman's terms that clearly supported his opinion. With our oncologist on vacation and having no intentions of seeing Denny suffer any longer, Dr. R. called in a prescription for Tegretol. From the first dose, there was a noticeable decrease in the intensity of the attacks. By yesterday there was a decrease in the number and today Denny has not had any pain at all.

What Den has is called trigeminal neuralgia. It is an uncommon disorder characterized by recurrent attacks of lancinating pain in the trigeminal nerve distribution. Denny's case seems to be limited to just one of the three nerves. While it is not usually attributed to another disorder (i.e. shingles) I suppose there could be a connection. It could also be connected to the radiation since that was on the left side, too. Most people experiencing trigeminal neuralgia have it on the right side. This might be a one-time thing or it could reoccur. We aren't even thinking about that!

So, gone are the pain patches, the pain medicines and the "pepper cream." We both got a decent night's sleep last night, and as I type Denny is looking over a few of the British Lit classes I-search papers from last term and the topic choices for the students in those classes this term.

Needless to say, it is with deep appreciation that we thank Jim Richter for what is a miracle to us. That is just the kind of doctor he is--I'm sure all of his patients get the same kind of attention. I don't know if they are accepting any new patients, but if anyone is looking for good family doctors, Jim Richter and Nancy Lindo-Drusch are the best!!!

Now Den just needs to rebuild his strength (again) and get healthy enough to get back on the chemotherapy, which seems to have stabilized the tumor. Hopefully, some decent spring weather will soon allow him to get outside to walk.

Thank you for your continued thoughts and prayers!
Love,
Carla

Friday, April 3, 2009

April 2

Hi,

Not too much has changed since our last entry. Denny is still experiencing sudden neuralgia attacks that do not seem to be diminishing in frequency or intensity. We saw Dr. Meena yesterday who gave us more prescriptions for our arsenal of medicines. She doubled the dosage of the Gabapentin, so he's at the maximum dosage of 1800mg each day. We got more Lidoderm pain patches, a tube of Trixaicin, and Oxycodone. The pain seems to start deep within his ear and radiate outward, so I'm not sure how anything will help, unless the Gabapentin kicks in. This "bump in the road" is the worst one so far. I sure hope it doesn't last as long as some reports say it can:(

Our love to all of you. Have a good weekend!
Carla