Recent Updates

Hi everyone. This is Jeff's daughter, Kimberly. He has asked me to take over his blog stop because he can not see well anymore. As of right now, he is doing okay. His vision has gotten significantly worse and he is on hospice services. when he regains some of his normal strength he will be traveling to Tulsa, Oklahoma for a new cancer treatment. He has said that he is welcome to take replies and I will just forward them to him. I will periodically give updates on him.

Thank you. = )

Big "40"

I didn't get very positive news from MD Anderson, but the evening after we got back from Houston Geri had a surprise birthday party for me to celebrate my 40th birthday. I've always loved bowling, so she had many family members and friends at the bowling center ahead of me. Geri had asked me if we could go bowl a game. I was a little hesitant because I wasn't feeling to well. Eventually, she convinced me to go play a game with her and the girls. When I walked into the bowling center I was showered with hugs and gifts; it was a true surprise. We all had lots of fun. Each of the gifts I received was so special to me, but the thing that touched me the most was just the opportunity to share that time with people who mean so much to me! Out of all the bad that can be said has happened to me, I'm glad to know that family, friends, and God are at the center of my life. It is a birthday I will never forget!

Good News / Bad news

Geri and I returned from MD Anderson on 09/22 with the results from my last MRI. The good news is that I don’t have to drink those nasty shakes anymore. The bad news is that the cancer is growing back rapidly, and to remove any new growth is no longer an option. The doctors say that it has started growing deeper into my brain. Any attempts to remove the cancer are likely to leave me with more problems and risks than it is worth. They also said that my vision had declined significantly due to the new growth. I can’t see much of anything to the left, so I have been bumping into things quite a bit.
THE DOCTORS AT md Anderson are going to try to get me on a new clinical trial, but it is not FDA Approved and they think my insurance is likely to decline my request. My other option is more in line with standard treatment for my cancer. I don’t get the impression that either of these options will offer much more than a life extension of a couple of months if they even work.

You can imagine that I have had lots of thoughts going through my head. Since I got back I have spent much time thinking about what I need to do and what I want to do. It’s impossible for me to figure them all out, so I’ll just have to do it like I have been; one day at a time.

Yes I’m still here

I know it’s been quite some time since my last post. I hope that you can accept my apology for not being diligent in keeping my blog up to date. I know there are many friends and family who rely upon this to keep up to date with my status. I have been trying for the last months to salvage what part of my normal life I could. I guess as a result of that I’ve spent much time in denying my illness which has also resulted in me ignoring my blog. In fact the last couple of months I have felt as good as could be expected. If I could pretend like it wasn’t there, maybe it would just go away.

Within the last month reality has been tapping me on the shoulder, letting me know that all is not well. I’ve noticed that the vision in my left eye is not what it used to be. Most the Peripheral vision in that eye is gone, making it difficult to use the keyboard without making frequent mistakes. My balance has also been off a bit. This could just be part of the eye problem throwing me off. I have also had periods of time when I just didn’t seem like I’m cognitively all there, or distracted at times. None of these problems seem to be terribly debilitating, but I do notice them. My concern right now is the cause of these new problems. It could be a side effect of the treatment I’m currently undergoing, or it could also mean that the cancer is starting to grow back. I hope it’s not the cancer growing again, but I have to admit that I have spent more time worrying about it than I should.

I should know more about what’s going on September,22. This is when we should get results from my next MRI. Geri and I will leave for MD Anderson this coming Thursday (09/21) and return no later than Saturday. I guess it’s all a matter of timing, but I’ll return in time to celebrate my 40th birthday on Sunday. Prior to my illness I may have been depressed about hitting the big “40”, but given the circumstances I have more to celebrate. I just hope to get good news to go along with it. I have more I could put here, but I’ll post again shortly after I get back from MD Anderson.

Finally Another Post

Sorry to all of you for the long gap since my last post. I’ll quickly try to bring you all up to speed on my condition. In my last post I had mentioned that all went well with my surgery, so I’ll pick up from there.

Shortly after my Surgery I went up to Ohio to visit with my family. I had a really great time there. I stayed several day in Columbus, and then spent some time in Maumee. It had been quite a few years since I had seen my family, so this was a very special trip to me. Hopefully it won’t be quite as long next time before I come back. While I was there I did have some days where I felt weak, and a little nauseated, but a nap here and there helped. Couldn’t ask for much better considering that I was still recovering from brain surgery.

After I got back I noticed that I was running a low-grade fever. I let this go for over a week, but when it finally went up to 102 I decided I better go the the ER and see what’s up. I ended up staying in the hospital for almost a week while they tried to figure out what was causing my problem. They took blood cultures, and out of 4, 1 was positive for Streptococcus viridans. This was interesting because this normally results from some sort of mouth problem such as gum disease. I don’t have such problems that I’m aware of, so both I and the doctors weren’t sure where it could be coming from. It’s also possible that it was a false positive results, but then there was still the question of why I was running a temperature for so many days. They put me on IV antibiotics and monitored my progress throughout the week. On about the fourth day they stuck some tube down my throat and examine my heart valves to ensure there was no damage done. Everything came out good, but didn’t have much fun getting that tube down.

Just last week I went back to MD Anderson to get a new MRI scan to see how things have gone since my surgery. Two months had gone by so I was very anxious to hear the results. It turns out that everything is great! Not only was there no new growth detected, but there was a reduction of swelling and scar tissue. I guess I have to give some credit to the clinical Trial I’m on for the positive results, although this Hominex diet is the pits.

Currently I’ve been able to return to work. Although I’m only there half the day, Ive been able to do quite a bit from the home. It feels good to be able to do most of the things I was able to do in the past. This week I’m on my Hominex diet, but Saturday I get to eat food again! I can’t forget to mention that Geri and I will be celebrating our 18th anniversary on June 16th. I can’t believe it’s been that many years, but in reflecting on the past I realize that there have been the good times and the bad times. It could’ve been easy for either one of us to come up with reasons to leave the other, but we’ve stuck it through and we are better for it. I’m grateful to have Geri as my wife. I don’t know if I could go what I’m going through without her. Hopefully there will be many more years.

Well, that’s it for now. hopefully it won’t be as long for my next post.

Surgery Completed and I’m Back!

I’m Back! It was a long, long week, but it is finally over. I’ll get strait to the results of my surgery. My surgeon was able to do a total resection of the existing tumor, and upon a followup MRI there was no visible tumor left! Can’t ask for much better than that. The only questions which can’t be answered is how much invisible tumor is still there, and what will it do. I can’t worry about these for now because I have been given the great gift of “today”.

This surgery was significantly different than the first one that was performed. The people at MD Anderson have fine tuned the whole process. There is a special surgery reception room where multiple patients gather for their scheduled surgery. At one point someone employed by MD Anderson came out and gathered up about a dozen patients and one significant other (for each patient) and walked us over to a very large elevator, which we all fit very comfortably in. Once we got to the floor we needed to be on, we all proceeded down the hall as though we were on a group tour. Eventually it widened into a large central station with prep rooms ringing the perimeter. As we walked around, each patient was detoured into their assigned prep room. This whole process took about 5 minutes to accomplish. I could easily tell that surgeries are just a matter of routine for them.

After I got appropriately dressed in my way cool gown and hair net, I was ready to get my first poke. I would have three IV lines set, but only one would be done while I was awake. It had quite a sting getting that first line set, but was over in just a few moments. After the line was set I believe that I was already being given a sedative, as I don’t remember much about leaving the prep room or saying anything to Geri before I left, although she said that we both said our “love you”. I do remember being in the operating theater for just a few moments. Again this was a very large room with lots of hardware hanging around. Within a few moments the anesthesiologist came over and let me know that I would be going under. No more did he finish these words and I was awakening from the surgery in ICU. My first thoughts where humorous thoughts of how sneaky these drugs are. How could I possibly be done with brain surgery. It was true, the surgery was over, and I felt elated at the fact that I came through ok. Shortly thereafter the other reality set in that there was a major incision in my head, and that meant a fair amount of pain. The folks in the ICU ward a very attentive to pain management, although they have a very sneaky approach to dispensing pain medicine. They ask you to rate the pain on a scale of 1 to 10, where 1 is almost no pain, and 10 is about as bad as it gets. As a patient I found this a little difficult to answer. I asked if a 10 was like being smacked in the head with a baseball bat. I was really just trying to expose the humor that I saw in the question. I generaly told them that I was around a 5 because I was having a moderate amount of pain, but I was obviously not experiencing bat pounding pain. It turns out that they try to manage the pain down to a rating of around 3, but my pain level didn’t seem to get any lower during that first day.

It was a very long first day. I layed there in the bed watching the clock much of the time, and tried not to shift to the left or the right, as the lines in my arms were causing some discomfort. I do have to give much credit to the ICU nursing staff. While it was a rough day, they were very attentive to my needs, and there was someone almost always there. I was able to order my first meal later in the day. I was determined to show the nurses that I could manage the meal as this would allow me to leave ICU and stay in a regular room. I had no problems with my appetite, but it was very painful to open my mouth more than about a quarter of an inch. Luckily I ordered a simple turkey sandwich so I was able to squeeze it down enough to minimize the pain trying to get it in my mouth and then chew. It felt strange that the simple things were no longer so simple, but it was a challenge that I was up to. I made my way into a regular room the next day and was able to leave the hospital on the third day of my stay. I wasn’t quite sure how long I was going to be in the hospital, so I gave myself a couple of extra days for the motel and return flight. I ended up staying 3 days in a motel after discharge, but this worked out well as I don’t think I was ready to be getting on any airplanes so soon.

I’m doing well now. I get fatigued easily and I’m still a little unsteady at times, but I’m sure that these things will get better with time. Unfortunately I have to go back out to MD Anderson in just a couple of days to start up the clinical trial which involves the Hominex diet (Oh Joy). I wished that I didn’t have to do this, but it does offer some hope of time extension.

I can’t forget to show my deepest appreciation to my church family. While Geri and I was gone they made sure that my daughters had hot meals each night. If that weren’t enough, my church family came out and did some work around the house and did some cleaning. I’m not even sure who all the people were that came out, but we are very thankful for all that has been done for us.

Well this has been quite a mouthful, but a lot has gone on in the last week. I’ll try to post another not so lengthy post after I return back from Houston on April 4th.

Back in a Few

A couple of posts ago I had mentioned that I may be having surgery again. Well I will be having a surgery on March 22 to try removing the tumor which has regrown. My Dr. (Dr, Amy Heimberger) at MD Anderson feels that she should be able to remove it all. But “all” is a relative word in this case. There should be no more visible tumor with contrast enhanced MRI, but there will always be the cells on the edges of the tumor which can’t be seen, and they can only go so far in try to determine where it is safe to remove the tumor from. I have asked Dr. Heimberger to be aggressive to give me the best hopes that at least the tumor won’t come back for a much longer period of time.

I will probably be home by May 27th and recover for some period of time before trying to do work part time. Again, my church family has shown a great outpouring of support in every way that you could imagine. My teenage kids will remain home with their older sister, but food will be brought by for them on multiple days. I’m also catching my ride to the airport from church family. I know that it is not I who can adequately thank them and others for what they are doing. Every act of kindness and compassion that has been shown is a treasure stored up in heaven. I have surely been blessed to have such a family.

More postings when I return

Back in a few

Fire the Chef

I started a new clinical trial this last Thursday. The attempt is to starve the tumor of an essential amino acid called methionine. Unfortunately there is no modified diet using regular food to accomplish this, so I have to consume a special shake that contains all of my nutrition with the exception of the methionine. I will be on this diet every other week for up to a year. this will be coupled with chemo therapy and serve as a two pronged attach on the tumor I’m not sure who developed this powder, but flavor and smell were last on their list. It is just baby formula with an attempt to mask the taste by overloading it with Tang. I don’t understand this. The idea is for people to drink this stuff, so why not make it something that actually has a drinkable appeal. I have to drink 5 huge cups of this stuff per day. I don’t know if I’ll be able to keep up with this. So far it is just determination that is getting me to tip the cup back, and the hope that this help either with my condition or with others who may suffer from this in the future. In any case I say “Fire the chef”.

Thankyou Friends at Triton

I just wanted to spend a brief moment to thank my friends at Triton. Last week I was supprised to hear that they had a raffle on behalf. They also had a very large card which many had put their personal message. I really do appreciate all the support they have shown, in all the ways it has been given. Just knowing that they care has deeply touched my heart.

MRI Results

Hi all, I just got back from my trip to MD Anderson where I had my first MRI since the end of six weeks of standard treatment. Unfortunately the scan indicates that some re-growth has occurred and there is also swelling around it. That would explain the headaches that I have been having. They are not that bad but noticeable in the front on my head. I have to admit to my spirits taking a huge hit the last day. I know I'll rebound, but right now I can't help but feel very down. I don't know how to describe the mix of emotions I'm feeling right now. They seem to come and go in waves. Right now I'm feeling OK.

As it stands, I'm probably going to have another surgery to remove as much of the tumor as possible. It may be done at MD Anderson or back here in Gulport Memorial. If it can be done just as well here, then that will be preferable for me. The exact date has not been determined yet, but sooner is better. I'm hoping that this won't interfere with my family visit to
Ohio in April.

Since I had new tumor growth I was disqualified for the clinical trial I was originally shooting for. Now I will be involved in a clinical trial where my diet will be modified every other week where a specific amino acid will be eliminated. This will be done by only consuming a medical shake where all of my nutrients will be provided except the amino acid they want to target. This diet will also be done in conjunction with Temodar (chemo).

I'll make another post when I find out about the time and location of the surgery