Edema and the causes of

Ed finished up chemo a few days ago, but has been having some swelling in the ankles. A call to the oncologist and we think he is drinking too much Gatorade (loaded with sodium) for a sedentary life style. After 24 hours without Gatorade the swelling has gone down, but his leg still giving some problems. Is it a side effect of the chemo or is it a new blood clot? He gets blood work done Friday and back to oncologist Monday. Maybe some answers on Monday. Hoping he can hang tough till Monday!

Chemo - Part 2, Round 2

Keep Ed in your prayers. Tonight he starts Chemo Part 2, Round 2. He takes a high dose of Temodar for 5 nights in a row and then will be off again for 3 weeks. This round was late...9 days late in fact, due to the fact his meds didn't get delivered in a timely fashion. Will order the next round earlier and hopefully will have better results. Please send up a prayer...for Ed's body to tolerate the chemicals, that the chemicals will attack and kill tumor and cancer cells, that it won't make him sick, that it won't make him too weak, that God will continue blessing Ed and all those who care for him and love him.

Sometimes, it takes more...

I opened an email yesterday, titled 'Nominated Best Commercial of the Year'. I really thought it would be a commercial about beer or a woman licking ice cream off a famous nude statue or a crafty car commercial designed to make you want to go out and buy THAT car RIGHT now!

Instead, it was a commercial by Pfizer, a leading medical drug manufacturer. You see a teenage boy using spray paint and you see him spraying buildings in the dark. Then you see him go home the next morning to a harried and mother, who was wonders what terrible business her son was up to all night that he couldn't come home till morning. She sees the paint can in his hand and you see the hurt and disappointment in her eyes. The boy makes a bee line to a bedroom where you see a child laying in a hospital bed hooked up to oxygen. The point being, the child is very, very sick. Then you see the boy pull the curtains wide to the morning sun, the child sits up and sees what the boy has done. He has painted the buildings across from their apartment with flowers and the words 'Be Strong'. The girl smiles. The mother mouths 'thank you'. The ending message is...Sometimes it takes more than medicine.

I believe that. I feel that if Ed relied on medicine alone, he would not be doing as well as he is now. He would not be getting in and out of bed unassisted, or walking to the bathroom, no longer having to rely on a urine bottle and bed pan. I feel like he would still be being fed by someone else, and having to use a sipper cup with a big handle. This past weekend I watched him pick up his walker and go to the bathroom with very little assistance from my Mom. I saw him open a bottle of Ensure. And he was sitting on the sofa, not laying in bed or in his wheelchair!

I feel that all the care and attention Ed has received from my mom, my brothers, sister-in-law, uncles, aunts, friends, extended relatives, ministers, doctors, and my self, have lifted his spirits and bolstered him. The cards and notes he receives brings him smiles.

My brothers cut the grass and bring in wood for the fireplace, my sister-in-law takes him to many appointments, has administered shots, and does grocery shopping. Friends bring food and laughter. My uncles come to visit and share a joke or story over breakfast. I do what I can do too.

All this helps him feel 'normal' and have good quality of life.

Yes, the medicines attack the physical ailments of Ed's body. But sometimes it takes more than medicine.

If you would like to see the commercial, try this link:

Graffiti_-_Pfizer_Commercial.wmv (7858KB)

Back on the right track...

I took Ed to his bi-weekly check up with his oncologist on Monday (4/13), and despite the seizures he had last week, he got a good report.

He had gained back 2.8 pounds and is now back up to 170. His blood pressure was 118/80 - very good! All his blood counts were good and the dilantin and coumadin levels were in the excellent range. His platelets were slightly down, but not so much as to cause alarm.

He was given the go ahead for his next chemo treatment, round 2 of a series of 6 rounds. Now just got to wait for the Temodar to be delivered.

Dr. Splichal wants Ed to continue exercising, and work up the strength to start walking again. Yeah! He said he was encouraged by Ed's improvement over the last two visits and felt like he could walk again with practice and exercise.

He will continue to use the anti-fungal medications as needed, but his mouth looked good. He also felt like Ed was doing a good job keeping hydrated. We had him look at his scar from brain surgery, and he felt like the redness in that area was residual radiation skin burn.

Dr. S also told me to get with Sarah, the WONDERFUL person who does alot of the leg work for getting medications and other types of help for patients, to look into the drug that was recently approved (or so we hope) for GBM. Yeah!!!!

Kudos to my mom who has really stepped up and took care of my step dad, even though she is not a nurturer by nature. She barely leaves his side, unless someone else is there to sit with him, just in case he has a seizure. She does all the house work now and all the cooking. She is Ed's primary caregiver and I feel she is doing a most excellent job of it! She is in her 70's after all.

Mending Fences

The same night I wrote my last post regarding Ed's great improvements, he suffered two terrible seizures within 10 minutes of each other. My mom was terribly frightened and called first my brother, whom she didn't reach, then a neighbor, who would have to finish his bath before he could come over, and then me. Finally, the neighbor and my brother arrived and were able to put him to bed.

Ed's seizures scared me too. My mom said they were longer and harder then previous ones. Perhaps as hard as the first two he had. After seizures, particularly hard ones, his strength is zapped and it takes time and work to get back to where he was physically and sometimes mentally.

We blame the seizures on the fact that his dosage of steroids were reduced. We immediately went back to the old dosage, as the oncologist had told us we could do, if the seizures came back or worsened. He's been five days without seizures now, and hoping and praying if or when he does have another one, it won't be as severe.

I saw my parents today. They both were in good spirits. The amazing thing is that my step dad has these setbacks, and yet his spirits are still high. He is pleasant and doesn't seem discouraged.
I think as long as my dad can help my mom get himself in and out of the bed, into and out of the wheelchair, help with basics such as toileting and eating and bathing, her spirits will stay up.

Today is Easter. Going to church today and hearing the message reminds me that we will all die one day, be it quick, be it slow. But the Bible promises we will rise again, as the Son of God did. And we will be healed and joyful and renewed. I thank God for this promise for Ed, and for myself, and all those I love and hold dear.

Mending fences is hard to do. My step dad has a major broken fence. His relationship with his first born son, Tony. To make a very, very, long story short, Ed lost contact with his son from his first marriage when Tony was about six years old. Ed, my mama, and Tony's mother could not come to any agreement about child support and visitation. I don't know alot of the details because I was just a child myself when all this came about, but I know my step dad went to jail for about six months for non-child support. In my heart, I know that it was not because he didn't want to support his son, but because he couldn't support his son and please my mama both. I am sure to keep the peace and his sanity, he had to do what he had to do. And so a young boy grew up without his biological dad and probably with a heart full of confusion, resentment and bitterness.

It is very hard to describe the volatile time during the first years of my momma's and Ed's marriage. For a long time, I thought 'her' name was a curse word. When her name was mentioned there was a fight and it was loud and scary and sometimes lasted for days with lots of screaming, shouting, cursing and upheavals. All I know is that after Ed came home from his stint in jail, our lives calmed down, we stopped moving every few months, and we were more 'normal' than any time I can remember. Tony did come to visit just a few times after Ed's jail time, but I guess Ed and his ex finally came to a point where it all just ended, sad to say.

Tony is 41 now. He has an illness of his own, and I don't know those details. Me and my younger brother and mom have questioned if we should contact Tony and let him know about Ed's illness, but we never knew, really, how to approach him or how he would respond, or how my step dad would respond. We didn't want Tony to lash out in anger and hurt Ed. We finally asked Ed did he want us to call Tony, but I think he was afraid too, of how Tony would respond, and/or how contacting him might make life more difficult for either of them. I am sure he was afraid how my mom would take it.

Someone, I am not sure who, told Tony about Ed. Tonight, he dropped by, unannounced, for a visit. My mom didn't recognize him, but Ed, laying in the next room on his bed, recognized his voice, even though as far as I know they have not seen or talked to each other for probably twenty years or so. (But I have learned since the original writing of this blog entry, he had some very limited, sporadic contact. I am thinking when Ed's Dad died some twenty-odd years ago.) Tony came by once when he his daughter was a baby...probably hoping he could form a bond with his dad through her. It didn't happen. Another time, just a few years ago, he came by to ask for help getting his mother a tomb stone. Ed wasn't home during that last visit from Tony, and didn't make an effort to contact Tony as far as I know.

According to my mom, the visit went very well. Now that Tony's mother is passed away, I think Ed and my mom can both relax and let him be a part of their lives. I think he needs to know his dad, even if it's at this late date; when they are both ill. I hope they can have some sort of relationship, even if it's strange at first, and awkward. Maybe they mend the fence. He said he will stop by and visit again soon. I hope he does.

Looking up!

Ed had a couple of bad weeks in March, but the week following his birthday, things started looking up!

First of all, the first round of chemo began flushing from his body, I suppose. He began using his right arm again, even exercising it with the one pound weights I gave him on his birthday. He also began exercising his legs; Mama lifts and bends them and moves them all about, and he started sitting on the edge of the bed and practicing pulling up with his walker, standing for a few seconds and sitting back down.

His appetite came back, full force! He has been eating four biscuits at one sitting a lot of mornings. They are usually stuffed with sausage and/or egg, and sometimes bacon. Some mornings he just wants toast. He drinks about four Ensure shakes per day, alternating between vanilla, chocolate and strawberry flavors. He also drinks several glasses of water, tea, milk or Gatorade per day.

The fungus (or Thrush as some folks are calling it!) has pretty much cleared up due to taking an anti fungal medication and using 'Magic Mouthwash'. (If you have never heard of Magic Mouthwash...it is a concoction of about 7 different medications including antibiotics, numbing agents, benedryl, an anti fungal agent, Maalox, anti inflammatory med and coating agents).

At his last check up with the oncologist, Dr Splichal, on Friday, April 3, Ed got a better report than his previous visit. He had gained 1.6 lbs back, was able to help himself in and out of the car and into the wheelchair, and no longer had signs of dehydration. His red and white blood counts were perfect, as were his platelets.

Dr. Splichal did indeed have a better attitude this visit, and a more hopeful outlook. He stated that he had been doing research on GBM (glioblastoma multiforme)...watching educational DVDs and learning things he had not known about the disease before. He said he had consulted a doctor that had a lot of experience with GBM (maybe he said the guy who had made the training tapes????) and one important thing he learned from him is that the MRI he took two weeks right after Ed completed radiation and chemo probably gave him a false reading.

I remember Dr. Splichal telling Ed (and us) at that time that even though he had just finished radiation and chemo (Part 1), that the tumor had survived and had grown to about 1.5 inches (this after the neurosurgeon had cut out the tumor in November...even though 'fingers' were left inside the brain). At that time, I couldn't believe it. But I'm not a doctor.

Now Dr. Splichal has learned, and shared with us, that an MRI taken that soon after radiation and chemo therapy, will show a very large amount of DEAD tissue!!!!!!! The advising doctor told him that it is very possible that the tumor has not grown to that extend at all, but that he had been viewing dead tissue! He advised Dr. Splichal to take another MRI a few weeks after Round 2 of Chemo Part II, which will begin Monday, April 13. He feels like Dr. Splichal will get a better and more informed picture at that time. So we are looking at an MRI sometime during the first week or so of May. Originally, the plan was to get an MRI after Round 3 of Chemo Part II, so this is a little sooner.

Ed's speech comes and goes. Some days, he speaks more clearly and forms really good thoughts and seems clear headed and unaffected by the tumor as far as being able to think clearly and make decisions and conversation. Other days it seems the right side of his mouth won't cooperate, it hangs slack and/or just won't move with the left side of his mouth, and it seems these days he thinks a little slower and has a tendency to repeat back some of what is said to him.

He is more able to feed himself again, especially things that can be picked up without a fork or spoon, and he is able to hold his sipper cup. (Walmart sells a plastic sipper glass, that has a built in sipper-straw that runs along one side up the length of the glass, with a large opening at top which accommodates ice and an easy on and off top - for $1.00! and it doesn't look like a kids only cup).

He loves to watch Westerns, and you might find him watching one any day of the week. He is spending more time up and about and taking less naps.

B2 and helpers built two ramps to accomadate Ed's chair. One takes him from the house and down one (half) step down to the front porch. Now, Mama can take him out onto the porch to get fresh air, sunshine, and a change of scenary. The second ramp goes from the front door to the ground so that Ed can go outside and easily be taken to the car.

He went for exactly two weeks seizure free, and the one he did have was very mild and mostly confined to tingling and burning in the right leg. This is a true blessing!

One morning, my mom went outside to feed the cats and dog and when she came back inside Ed was sitting in his chair, not in the bed where she had left him. She asked him how did he get into that chair, and he said 'I did it'! That was amazing considering the week before he could barely lift his right arm.

Medication changes in the past two weeks include reducing his heparin shot to 80mg (from 125mg) which means he only gets one injection per morning now, he was put on Coumadin to further assist with the blood clots, and his steroid dosage was brought down another 4mg! He is taking only 2 steroid tabs a day now, from 4 in the beginning! That is good news because steroids are good for reducing swelling and helping in other areas, but it causes muscle weakness! He was also taken off Zantac and put on Prilosec OTC, one caplet a day.

Also, as a side note, Ed voluntarily stopped taking some meds (at my urging and advise), ones I didn't think he needed to be taking. One, the tabs he was taking for hiccups. I told him if he'd stop taking it, he could always start taking it again if the hiccups started back up. I was really glad he stopped it because I read that it is a mind altering drug that mental patients are sometimes given. The other one was an anti-nausea pill taken that was not taken in conjunction with nausea. Again, I told him if he started having nausea again, he could always start it again. These drugs were 'as needed' drugs and right after surgery he did need them on a daily basis. But since he has stopped them, he doesn't need them!

One drug he has stopped using is his Advair for his emphysema. I totally disagree with him not taking it, but it's a battle I am willing to lose as long as his breathing seems okay. I am wondering if he's stopped taking it because of cost. I am going to look into seeing if it is offered under a patient assistance program at low or no cost, to see if that would encourage him to start using it again.

One last note, B2's girlfriend found out about a news release concerning an existing drug used for other types of cancers, but is now being approved for use with GBM patients! It is not a cure, but another avenue to try in improving the life of brain tumor patients...increasing time and quality of life for the patient! (called Avastin)

Praise God! He is answering our prayers in that Ed's life seems to have calmed down some, everyone seems to be handling all of this better, God is being gentle in that the chemo doesn't make him sick, he's been regaining some strength and appetite, he continues to have such a positive outlook and peaceful manner about him, his doctors are researching his disease in order to help him more, drug companies have accepted him for their special programs in getting low or no cost medications, and new medications are on the horizon for his possible use in the future! God is good - all the time!