50/50

Ed, getting radiation early on in his disease.

I got a free movie rental code from Redbox today.

While in Walmart I decided to see if there was anything good to rent. I didn't really see anything, but then I saw this movie called 50/50. I got it. I mean, even if it's not good, it's free. So what's the big deal.

I had seen previews for this movie months ago. A guy finds out he has cancer. His dopey friend thinks he can use sympathy to pick up girls for them. Joseph Gordon-Levitt is the main character (you know him - he's the kid on 3rd Rock from the Sun) and his side-kick is Seth Rogen. Ok, with that guy you know it's going to be a dopey movie!

Oh God. I didn't know.

I thought it was a comedy. And it is, partly. I mean, it does have some humorous parts to it.

But mostly, it's kind of real.

The shock of hearing those words. Tumor. Cancer. Chemotherapy.

The disbeleif.

The people in your life who say you can count on them. But you can't.

Shaving the head.

The loneliness of chemo for some...hose who don't have someone to be with them during the process.

People who believe it's about them. Not about the person with cancer.

Needles. MRI's. Surgeries.

Ups. Downs.

This movie has brought back a lot of things I try not to think about. Ed has only been gone two and half years. I know as I get older and more time goes by, certain details will get lost in the tangle of my brain. Some things I want to forget, some I don't, some I need to, some I can't. I hate crying over Ed, because I know he wouldn't want me to.

Lucky for me, this mostly, 'cute' movie, was not too depressing. It just made me remember. And lucky for me, this movie had an ending that didn't send me over the emotional edge.

I wish all cancer stories could have an ending like that.

Would I recommend this movie? Yes. Like I said, it's mostly cute. And if you've never seen anyone go through cancer, it probably won't effect you in a sad way. If you have seen someone go through it, it might help you release some pent up feelings. Maybe even a tear. And it will make you laugh a little too. I'll give it a thumbs up!

He keeps on tickin'...

...like a Timex watch!

Three weeks ago Ed had his last visit with Dr. Splichal, his oncologist. At that appointment, Ed was told the tumor in the left side of his brain had not shrank from the last round of chemo, but instead, had grown. According to the MRI done just the day before, it had grown enough to shift his brain one half inch off center.

All chemotherapy has been halted. Ed had already decided to opt out of his last two chemo treatments of the Avastin/Irinotrican cocktail. Dr. S also stopped the blood thinner, coumidin, stating he was in more danger of bleeding to death (in the event of a cut/hemorrhage) than of dieing from a blood clot. Dr. S increased Ed's dosage of the steroid from 1mg a day to 16mg a day to help with the swelling of his brain, which according to the MRI, is significant.

Other drugs, both prescription and over-the-counter, Ed currently takes are Lyrica (for seizures), Dylantin (for seizures), a high blood pressure medication, a cholesterol lowering drug, a stool softener, a Centrum 50+ multi-vitamin, and Prevacid (for stomach acid). There are other drugs he takes on an as needed basis...two different types of inhalers for his emphysema (wheezing), Tylenol for headaches/aches & pains, Lortab if he needs something stronger, and Morphine tablets in case it gets really bad, Mucinex and Benedryl as needed for runny nose, nausea and anxiety medications are on hand 'just in case'.

Ed's day begins early, usually sometime between 6:30am to 7:30am, when Mama gets him up and changes him and washes him. She then cleans and changes his bed. He sits in his wheelchair while she makes breakfast, perhaps taking his pills (twelve in the a.m.) while she prepares. Breakfast usually consists of sausage and biscuits and scrambled eggs, but sometimes there are smoke-links (hot-links), bacon or ham, gravy, grits or oatmeal, and sometimes pancakes.

Most mornings, my uncle Mert (Mama's brother) comes to get a biscuit and bring Mama the newspaper. Mama will go out and feed the cats and dogs and let them out of their pens for the day. The day is spent watching TV, reading, visiting if anyone drops by, quilting, lunching and napping. Ed loves westerns, and Mama loves court TV, so those are the two most watched things each day.

In the evenings, Mama makes dinner and sometimes has to wake Ed from his nap to get him ready for dinner. He can sometimes feed himself with his left hand (he is right handed, but his right hand is almost totally without use now), but sometimes she has to feed him, especially if he opts to stay in bed to eat. Usually an hour after dinner he takes the p.m. pills; all ten of them. The rest of the night is spent either visiting with friends or family who have come by, or watching country music shows, or Repo, Cops, or a reality TV show about living in Alaska.

Mama usually has the job of moving Ed from the bed to his wheelchair, from wheelchair to recliner or toilet, and back to the wheelchair or bed, by herself. She is pretty tough to be 72 years old, but Ed is heavy at 185+ pounds and he is unable to help as all the strength and use is gone from his legs. Most of the time, she does okay with him, but at times he gets off balance and sinks to the floor. At those times, she tries to get him up on her own, but often has to call my brother (who lives about three miles away) or a neighbor (about a half mile away) to come assist her on getting him up.

We have asked Mama to let Hospice come in and help, but she is not ready for that. The word 'Hospice' invokes such fear in the minds of the sick or the caregivers/loved ones of the sick. When you hear the word 'Hospice', you think 'death', 'morphine induced coma', and 'bossy nurses' who come in and take over. Mama (and Ed too, honestly), don't like the idea of a stranger coming into their homes. I know Ed does not want a stranger feeding him, bathing him, seeing him naked, or handling him. I know as long as Mama is physically and emotionally able to do it herself, she will.

Our friends and family have rallied around to help as much as we can and as much as they let us. When people get older, the one thing they are afraid of losing (other than their spouse), is their independence. Older people dread the day they are no longer able (or allowed) to work, drive, or live alone. The longer they can delay the end of these things, the better they feel. Me, my brothers, sister-in-laws, aunts and uncles, cousins, and Mama and Ed's friends do what we can do to keep them as independent as possible. But shopping, cooking, cleaning can only go so far. Mama really needs someone to come in and help with bathing, lifting, changing, but she isn't giving in to it just yet. They have no insurance for a home health care nurse, and Ed does not qualify for Medicare/Medicaid yet (he is on disability - 14 months down, 10 months to go) and will not qualify for Medicare/Medicaid until disability changes over to regular social security benefits. The best (only) choice is Hospice.

Ed still has his mind. He does get things mixed up...he might say yes, when he means no, or vice-a-versa. But he still tries to communicate with words and hand motions. He will still let you know if he likes or dislikes something. He still smiles and laughs when someone tells a joke or funny story. He loves to 'join in' when everyone is talking by nodding his head or just following along and smiling (or not!) when appropriate.

Ed tried to answer Dr. S question, what is your quality of life like these days, he shrugged and said well...but since he cannot speak well, and Dr S is a busy man, he never got to finish that question. Sometimes, if I let my mind wander, I imagine that Dr S feels like the life Ed has, is not worth the trouble. I beg to differ, and I think Ed would too, if he could speak. Maybe I am wrong.

Dr. S told us three weeks ago that Ed has between two weeks and two months to live according to his calculations (based on past experience with cancer patients and the 'signs'.) But Dr. S has been wrong before. We hope he is wrong again. Once again, we go back to that old familiar word that I have referred to since this journey began over a year ago...HOPE. We still have hope. Maybe we are hoping for something different now...maybe we are being more realistic about what we are hoping for. Instead of a cure, or a miraculous healing, maybe that hope now is for a good quality of life for what life there is left... filled with love, care and gentleness.

The diagnosis of a GBM brain tumor gives a man (or woman) a hard row to hoe. But maybe there is hope for a small spade to gently turn that dirt. Maybe instead of a crash landing, we can hope for a slow and soft descent.

Graduation

Picture 1). My brother shaved his head to match Ed's head...but it's not quite as short as Ed's!


Ed 'graduated' from radiation yesterday. He completed six weeks of non-stop radiation.

The effects of radiation and chemo have been:

*After the second week of radiation, Ed experienced fatigue, weakness and sleeplessness.
*After the third week, his fatigue and weakness worsened. His speech become more slurred.
*The fourth week of radiation, Ed's hair begin to fall out. You could gently grasp the strands on the side of his head, and they would pull out with ease. That is when he decided to shave the rest of his hair off.
*At the beginning of the fifth week, Ed was so weak he could barely grasp a glass of water, he needed to brace himself against walls to walk, he was napping frequently, his head looked sunburned, and his speech was so bad now you could only understand a few words.

The effects of chemo and other meds:

*The steroids cause him to be hungry. He eats often. He has gained about 10 pounds and has gone up a pants size and for the first time (as far as I know) wore sweat pants in public.
* His sense of taste has changed. The only drink he enjoys now is coffee. He drinks up to 6, 7, and 8 cups of coffee a day. We talked him into switching to decaf, because we were afraid he the caffeine may be setting off the seizures.
*The steroids also make the muscles in his legs and shoulders weak.
*He takes medication to counter-react the hiccups that steroids cause.
* At times, when adjusting to different medications, or different dosages of medications, he was easily confused.
* Since the chemo pill he was taking during radiation was low-dose, and he took a nausea medication 'just in case', he did not experience nausea or vomiting, thank God!

Doctor reports:
*Each time Ed's blood was tested he got very good results. In fact, all the doctors report his blood work comes back excellent. They test for Dilantin levels, (he takes Dilantin, in combination with Lyrica to control the seizures), red blood cell level, white blood cell level, and platelet level. And probably more that I don't know about.
*His lungs have remained clear according to several chest x-rays.
*Beginning the fourth week of radiation and chemo, his oncologist expressed great concern that Ed take precautions not to fall. (Are his bones weakened by the radiation, the chemo? I know steroids weakened the muscles...also the whole concoction of meds he takes probably make him feel 'drunk'.)
*All Ed's doctors say that for what he has been through...brain surgery, chemo, radiation...that he is doing excellent.
*The final week of radiation, Ed saw the neurosurgeon who did the brain surgery, and she confirmed that Ed has a titanium plate in his head. We didn't know that before!

Ed continues to have seizures. He still gets an 'aura' before they begin, so he has been able to sit or lay down before they occur, so far. They last about three minutes at the longest, and involve burning and tingling in the face, neck, shoulder, down his right arm and side, and down the right leg. I am not sure what his 'aura' is, it may be the tingling, quivering sensation he gets in his tongue, that he has described to us.

Now that Ed has graduated from radiation and chemo, we wait for the next instructions. Originally, he was told he would start Round 2 of chemo after the initial six weeks of 'low dose chemo'. Round 2 would involve a tripled or quadrupled dosage of Temodar, the drug designed specifically for brain cancer patients. We don't know how soon Round 2 will begin.

He has several rounds of doctor's visits coming up, along with follow-up x-rays, scans and blood work. All designed to determine how well the treatment has done in the job of eliminating the cancer, and to determine if any damage was done to his blood, bones and surrounding tissues.

Ed has done extremely well with his treatments, thus far. I credit that to the several things; 1) the removal of most of the tumor, 2) the remarkable advances in drugs available today, 3) the awesome care he has received from doctors, mama, family and friends, 4) his upbeat attitude and cooperation during this whole ordeal, 5) all the prayers which have lifted him, surrounded him, and filled him, 6) and God's graciousness.

Today, my Aunt J and I went to work at our little part time job, and our customer and her husband joined hands with us to pray for Ed. They prayed for Ed to be healed. They believe, like we do, that God is able to heal, that he wants to heal, that he will heal, and that he does heal.

Please continue to pray for Ed. He is a good and gentle soul. He is so accepting of all that is happening to him. How wonderful if we could keep him here with us a while longer; cancer free, pain free, and happy.

I do believe God is listening to my prayers, and yours.

If you want to send Edward a 'graduation' card, I will give his address to those who ask for it. Email me at chapster13@yahoo.com.

Picture 2) In this picture you see how the radiation has blistered the left side of his head, where the rays are aimed, nearly coming over to the eye and face area.

Radiation and Chemo

(Ed getting ready for radiation...note the 'donut' he holds on to.)

Because Ed does not have any type of insurance, we wondered how in the world he could afford chemo and radiation.

Dr. Splichal and the Cancer Care Center (in Athens) quickly worked out a plan for him as far as some of his medications and the radiation. He would pay for some of the less expensive medicines, pay a nominal fee each week for his care, and receive some samples of some of his medications.

The big hurdle was the chemo pill, Temodar, and the nausea medication needed to take along with it.

Temodar is astronomically expensive. It can cost up to $10,000.00 for a month's worth of treatment. Temodar works by slowing down rapid cell growth characterized by cancer cells. The most common side effects are nausea and vomiting. Other side effects are headaches, hair loss, loss of appetite, tiredness and constipation. Blood tests must be taken every other week to determine how the body is tolerating the chemicals. Thanks to the Schering Corporation's COMMITMENT TO CARE® program, Ed receives this drug at no charge. Praise God! We prayed and prayed about how he (we) could afford this drug, and God answered.

Next, he needed the drug Anzemet, which is highly effective, very strong anti-nausea drug. It too, is very, very expensive. The side effects of Anzemet are headache, tiredness, and diarrhea. (Hmmm, an answer to the constipation caused by Temodar???). But it keeps the cancer patient who is undergoing chemo treatment from having nausea and vomiting. What's a little headache and tiredness, right? It was our understanding that this drug costs roughly $2,000.00 per month. Once again, we prayed. And God answered our prayers. Ed has received samples of this drug, and hopefully will be approved soon to receive assistance from that drug manufacturer.

Say what you will about drug manufacturers. But right now I can only praise the makers of these two drugs.

Finally, with pills in hand, Ed was given the green light to start chemo and radiation! It had been 33 days since his surgery to remove the tumor. We were getting antsy. After I did some research though, I saw that typically brain cancer patients wait up to eight to ten weeks before starting radiation, to allow the brain to heal. But now, his treatments were to begin, and we all sighed a little sigh of relief. Now, something would be done!

(These are the monitors the radiation technicians watch while Ed is under the radiation machine. Ed describes it as being inside an 'electrical storm'. He said it pops and crackles all aroud his head.)