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.