Clowning around at radiation therapy . . .

The top picture is the "Pecker Cane" that Steve's family gave Marc for Christmas. The cane is made from the reproductive organ of a bull, has an eagle handle, has 2 Indian head nickels embedded into the cane, a label indicating the cane's origin and a label with Marc's name on it. The picture on the bottom is of Marc and a buddy he met at radiation. They both enjoy clowning around. Marc is wearing his "hair hat" that the kids gave him for Christmas (our granddaughter Abbie has a matching hat with blond hair). Marc's buddy had been telling Marc that he needed to wear a hat to keep his head warm, so Marc surprised him by wearing the hat. The staff at the clinic loved it.

Marc seems to be doing better this week. He has a little more energy and has been puttering around in the garage and yard some. His speech improves some every day. It is still difficult for him to express what he wants to. Speech therapy is helping a lot. The appointment at the neurologist today was encouraging and the neurologist seemed to think that because of the recent improvement the speech would continue to come easier. He explained that Marc would just have to relearn all of the language skills that had previously come easily.

The radiation is going smoothly and Marc no longer has to take the sedative to lie there with the mask on for the treatment. The staff plays music during the treatment which Marc says helps a lot.

We had a wonderful Christmas with our family and enjoyed watching the kids on Christmas morning. Marc and I feel truly Blessed to have the wonderful family and friends that we have. Everyone has been so supportive, we can't ask for more!

Happy New Year to all and I will post more later in the week.

Discouraged

The photo is of Steve, Julie, Annie and Abbie all clowning around with Marc. Seeing the grandchildren brought out a smile from Marc that I haven't seen in many days. It was good to see him smile.

The progress has slowed, leaving both Marc and I quite discouraged. Marc is not able to speak more than one or two words and then can't come up with what he wants to say. Communication is difficult at best. We are continuing to go to speech therapy and have an appointment with the neurologist on 12/30 to see if there is anything we can do to try to improve things. Marc has finished 4 radiation treatments so far and seems to tolerate them well. He has lost his appetite and I'm not sure if that is from the chemo or the radiation. He doesn't have a lot of energy and feels really tired all the time but we were told that would happen with the radiation treatments, so it was expected. We have 2 more treatments this week and then they are closed Thursday and Friday for Christmas, so we willl start back again on Monday.

I'll post more after Christmas. Merry Christmas to all!

We're home

Marc was discharged yesterday afternoon, just in time to get his radiation therapy. It seems like we are having trouble getting the radiation going. We just hope we have no further setbacks so that we do not miss any more treatments.

He is glad to be home but is really tired; which are most likely effects from all of the medications that he is taking now coupled with the radiation therapy. We are hoping that there will be no further admissions or complications.

We would like to wish you all a very Merry Christmas and a Happy New Year. I will try to post more next week.

Hanging in there . . .

Marc continues to be stable. He is very frustrated being confined to the bed and also because of the expressive aphasia. I can't imagine what it would be like to know what you want to say but not be able to get the words out. He is still getting heparin (the anticoagulant) via IV and once he is therapeutic will start with injections that will be daily to keep the blood from clotting. I am guessing that he will be hospitalized for two or three more days. He is really wanting to get home and wants to see the grandchildren.

I'll post more tomorrow.

One step forward, two steps back . . .

Well, we really thought that Marc was doing better since coming home last Wednesday evening. Friday night he started having some left leg pain and swelling. He didn't show any signs suggestive of a blood clot and had no difficulty breathing, the pain improved with rest, moist heat and Aleve. The last 2 days he seemed to have more energy, his leg was feeling better but still bothered him some. We tried to get into the Dr. yesterday but there were no openings so we went in this morning. The Dr. examined him and thought the pain was probably musculoskeletal and not anything more serious but ordered venous doppler studies to rule out a blood clot as the cause of the pain. Long story short, the doppler study indicated a very large clot extending from the groin to the lower leg. We were sent to the ER and Marc had a CT scan of the lungs which showed multiple pulmonary emboli (blood clots in the lungs). That made the situation much more serious requiring treatment with an IV anticoagulant and frequent monitoring of the blood clotting levels. Although he had had no more seizures, his dilantin (anti-seizure medication) level was also very low again requiring IV medication to get his levels up to a therapeutic range. At least we are not in ICU, just the IMU. It isn't quite as noisy here and maybe Marc can get some rest. The nursing staff here is excellent and we have the same night nurse we had last week.

Marc now has very few veins to choose from for IVs or blood draws as they have been 'used up' the last 6 weeks. He needed the heparin as well as the dilantin and they couldn't be given through the same line. In order to assure a good IV access in case of an emergency, easy access to blood draws and multiple ports in which to administer the medications the Dr. suggested placement of a central IV line. She got the line inserted without difficulty and an Xray confirmed proper placement of the line. They were able to D/C the peripheral IV line and start giving the medications in the central line. Marc is finally resting some.

Because of the blood clots, Marc has been placed on total bedrest. That in itself is very frustrating to Marc as he usually will get up in the night and walk. He is discouraged that he is back in the hospital and I can tell it is very difficult for him. Fortunately he is accepting the treatment and realizes the seriousness of the situation. We are hoping the stay will not be too long and that he recovers quickly.

Please continue to keep Marc in your prayers. I will try to keep the blog updated daily.

New hair do, or should I say no hair do

Well I guess Marc got tired of me calling him an "Old Hippie" and decided to get rid of the rest of his hair before I decided to braid it in back. We went to the barber to get the shave today. It was kind of sad to see the hair come off but Marc looks pretty good bald!

The first radiation treatment went well. Marc had no problems. The staff at the radiation center are wonderful. We have been very fortunate to have such good caregivers that are so close to home. So far Marc has done well with the chemotherapy with no side effects but he has taken only 2 capsules. As I understand it, most people do well with this drug.
Marc is pretty tired but overall is doing well. He is still having some expressive aphasia but it seems to be improving daily. It does frustrate him when he knows what he wants to say but just can't get it out. I told him I guessed that my finishing his sentences all these years might have some benefit but I usually don't come up with the right answer when I am trying to guess what he wants to say. We are both learning to be more patient.

On a positive note, our grandson Brayden's baseball team won their game tonight 10 to 0 with Brayden pitching 67 pitches to 14 players (is he major league stuff or what!) and they play for the championship tomorrow. The weather is supposed to be nice so Marc and I are planning on going to the game.

More later . . .

The CT Mask

We went to the "trial run" today for the radiation therapy. We thought that the pictures would help express how claustrophobic the mask makes Marc feel. The pictures displayed are: positioning Marc on the CT table, placing the mask and securing it to the table for the radiation treatment and a post-treatment picture showing the mesh indentations on Marc's face.

He did well today for the trial run. He was a little anxious at first but settled down and was able to tolerate the entire procedure without difficulty. We go back every weekday now for 7 weeks (with the exception of holidays). Tomorrow will be the true test as the treatments will last 20 minutes, that's a long time to lie there with that Mask on his face. Marc is strong and determined so I have no doubt that he will make it through the treatments without further problems.

I'll post more next week after a few treatments . . .



(Click on photos to enlarge)

We're home again

Here is a photo of Marc "all wired up" for the EEG

The neurologist made a late appearance last evening and reviewed the EEG results with us. The EEG was concerning because there seemed to be an indication of a possible "status elepticus" or continuous seizures which are very serious. He ordered a repeat EEG this morning. Fortunately, after studying both EEGs it was determined that the abnormal waveforms were PLEDS (Periodic lateralized epileptiform discharges) which are not as alarming. Marc will need to continue to be on antiseizure medications and have frequent monitoring of the medication levels. The good news is that the confusion and aphasia that occurred were a postictal (after seizure) condition and not the result of tumor regrowth.


We spent the day waiting on the neurologist to come in and review the EEG with us. It was a long day indeed. We had been told that if everything looked OK on today's EEG that Marc would be discharged today. The neurologist finally got there at about 6 pm. Then we had to wait on the admitting Dr. to come in to write the discharge orders. All said and done, we didn't get home until 8:30 pm.


The radiation was again rescheduled to start tomorrow and will continue 5 days a week for 7 weeks. Tomorrow is a "trial run" just to make sure that the targeted radiation is set up correctly and the actual treatment will begin on Friday. He will start the chemotherapy on Friday and take it daily until the radiation is completed. Thank goodness we have good insurance as 20 capsules of the chemotherapy retails for $5863.00; that made the $30 co-pay seem like peanuts.

We will be continuing speech therapy and increasing the frequency of the visits as Marc lost some ground there. He had improved so much prior to this last episode that they had cut back the sessions to once a week. Although his expressive aphasia has improved some since this admission he feels like he is back to square one.

Marc continues to have a wonderful attitude and says that he will beat this thing. He gets frustrated but that is understandable. I can't imagine how he feels going from independence to relying on me to drive him to his appointments, set up his medications, remind him to take the medications, etc. I just know that I am very proud of him and so thankful that he has the great determination and drive to overcome this illness.

I will post again next week after a few treatment have been completed. Please continue to keep Marc in your thoughts and prayers.

The Saga Continues . .

Who is the patient here anyway??

After doing well during the holidays Marc had a minor but troublesome setback. On Saturday night he became very confused, agitated and couldn't speak. Steve was in Kansas deer hunting and Julie was home with the three grandchildren so I called Marc's good friend Ricky who graciously got out of bed and came right over to the house and helped me take Marc to the emergency room. Julie, bless her soul, called a friend to stay with the kids and came right up to the ER to be with us.

They immediately did another CT scan, which showed no changes and lab work which returned normal except for a sub-therapeutic dilantin level (the antiseizure medicine). Because Marc's confusion and agitation had abated with the exception of some mild expressive aphasia the ER doc had come in to tell us that everything looked good and we could go home. Just after that Marc started getting agitated, had some mild facial twitching, became very confused again and the aphasia worsened. At that time the ER Dr. contacted our Dr. for admission. That was all fine and well but the hospital was full. With no beds available, we spent 25 hours in the emergency room before finally being admitted to a room. While in the ER Marc was given IV dilantin to help bring his level up to the therapeutic range.

The next morning Marc had another MRI which also showed no changes from the last one. Because the symptoms were very similar to his initial symptoms we were very concerned that the tumor had regrowth and we were very relieved to find that this was not the case. His labs again looked good with the exception of the dilantin level, which was still low. He received more IV dilantin and the neurologist felt that the issue was probably related to seizures and ordered an EEG to be done this morning.

The preliminary report from our hospitalist, a wonderful Dr. that has cared for Marc during each admission, indicated some frontal lobe activity. In layman's terms, this means that the problem that Marc most likely has is seizures related to the GBM removal. We were initially told that Marc would need to be on anti-seizure medications for the rest of his life but the reality didn't really set in until we learned this. Now we have to concentrate on getting the levels of the medication to a therapeutic level and keeping them there. We still have not spoken to the neurologist as he comes in late in the day for rounds, so now we are waiting for the official report from him. He did indicate last night that Marc would possibly need to have another anti-seizure medication added to his daily meds. So now we sit and wait again. Marc and I both were disappointed that he wasn't able to go home tonight but understand the need to have the medications properly adjusted so that we do not continue to have problems. We are now hoping to go home tomorrow and have rescheduled the radiation therapy to start tomorrow.

As a side note, Steve did get back late last night and brought home a trophy buck and a doe. He spent most of the day at the hospital with us and cheered Marc up with a bacon cheeseburger and fries for lunch. What a blessing it is to have such wonderful family and friends!

More later . . .

Papa and Annie all pooped out after all of the Thanksgiving activities while Abbie tries to figure out what's going on!

Well you can tell who tuckered out after all of the Thanksgiving activities. We had a wonderful holiday with Steve, Julie, Annie and Abbie; unfortunately Brayden was visiting his Dad so he wasn't here. Steve even helped get all the outside Christmas decorations up, so it looks like Christmas at the Budges'.

Unfortunately, we just thought that Marc would be starting the chemotherapy and radiation therapy this week. The radiation oncologist decided that it would be better to wait another week to be sure that everything had healed from the second surgery before starting the radiation therapy. The chemotherapy is taken orally every day that Marc has the radiation.
We are tentatively scheduled to start on Monday next week. It is probably just as well. Marc is healing fine but the high doses of steroids they are having him take are giving him some unfortunate side effects. He has only been sleeping 3 or 4 hours a night so, needless to say, he is exhausted. The steroids are also causing him some anxiety. We went back to the Dr. yesterday and he gave Marc a prescription for Xanax to help counteract the side effects of the steroids. He actually slept about 8 hours last night and was only up two or three times, so it definitely helped. So after a few nights of good rest he should be ready to begin the daily therapy. I know that we both just want to get this started, the waiting is terrible. We are not bored by any means as Marc is still going to speech therapy, ophthalmology appointments and other Dr. appointments.

I am just thankful that my work has been so gracious to let me be off with him when he needs it. I am hoping (and needing) to get back to work, at least 6 hours a day, starting the week after next. That way I will be sure that he is tolerating the therapy well before I start back. I hope to be able to work until about 2pm every day and then come home to take him to his therapy. That way if he has any problems immediately after therapy, I will be home with him when they occur.

Well, that's all for now. I'll write more next week after the treatments get started.