November 2, 2001 ~~ Another week down
Another week under our belts. Only seven more radiation treatments. My Mother is still giving him a ride every day at 11:30 A.M.. On their way to the doctor they drop Ryan, one of our day care children, off at kindergarten. These radiation appointment are never long, Michael is always back by noon. Michael is holding up well, this week we are even going to try to cut the Decadron back from 16 mg to 12 mg.
The sleeping pills Doctor Kim ordered are working well, he is getting better sleep, not more, just better. Michael goes to bed at 10 P.M. wakes up at 1 A.M. then again at 3 A.M. and again at 5 A.M.. I have to smile as all you moms probably recognize, this pattern as that of a new born baby, one good thing I do not have to get up and feed him like I would a little one. He does say though that the sleep he is getting, is better than what he gets without the medication. He is able to take naps that I think help. His naps at this time are from 9-10 A.M. and from 12:30-3P.M., and every now and then when I look over he is snoozing on the couch, head dropt back, mouth slack, snuffling noises erupting.
Tuesday before I was to leave for Weight Watchers, Paul came over, dye in hand. He wanted me to dye his Hair purple. He had a fresh hair cut and now needed a fresh color. We went into the kitchen I bleached his black hair blonde then put on the purple dye. After a few minutes we rinsed out the dye and his hair was a lovely shape of purple. He was very pleased, I have to agree, he looks good in purple *giggle*. After such fun I dressed and was off to Weight Watchers. I love it when Paul comes over. He is a good son and always makes me feel good.
We had a giggle this week. Michael lit his hand on fire as I slept. Early Wednesday morning as I lay snoozing (2 A.M.) Michael went out to the patio to have a cigarette. He lite his smoke, then after a moment looked down to see the book of matches in his hand ablaze. I opened my blurry eyes as he was showing me his hand and telling me how he lit it on fire. Put some ice on it I mumbled as he was explaining to me how it happened. Ok it wasn't funny then but now it is humorous.
Michael is hungrier than I have ever seen him. I know this hunger is a side effect of the Decadron. He eats a HUGE breakfast of sausage, toast and eggs, a big lunch, a full dinner then after dinner the munches get him. Before bed Michael has a manly bowl of cereal, followed by pudding, and more eggs and sausage. He has gained some weight but that is ok.
It is now Friday and I have caught yet another cold. I am very depressed. I am trying to figure out if is an aftershock of everything that has happened, the fact that I gained 16 pounds in the last three weeks, a slow Halloween, or if it is just I am sick, again, and that stinks. Oh well this too shall pass.
We had a new helper girl this week in the afternoon. The young lady who was helping us could not get here before 4 P.M. and at this point I needed someone who could work more hours. Our new helper girl gets here at 3 P.M., she helps me get the children up from their nap, gives them snack, and plays with them. Her name is Anaise. She is a sweet 15 year old high school student, and the children are very fond of her already.
November 12, 2001 ~~ The light at the end of the radiation tunnel
There is finally a light at the end of the radiation tunnel. Only four more zaps to go. Next week will be it. I am very glad as I see the radiation taking it's toll on Michael's body. The doctors say he will not need lab work this week. They told him his blood work was steady for the course of the treatment and this close to the end, he can pass on the blood work, that was a nice break.
Michael's vision is deteriorating, things are getting fuzzy. We thought about maybe new glasses, but if it is just the radiation new glasses would be a waste.
His patients with me the last few days has been as short as his energy. He actually yelled at me because I did not agree with a movie critic. All I can do is let him know it is unacceptable to yell and walk away. I know it is the Decadron, not him and when the radiation is over he will probably get to go off of it.
He has been "pushing off" the chair I have noticed when he is getting up. This week has made him slower than usual. He has even been caught him in awkward positions that he had to ask for an arm up from.
He is not sleeping longer than 2 hours again, even with the sleeping pill. He still manages to sleep eight hours out of twenty four.
Hopefully after radiation is over these problems will rectify themselves.
On a bright side he has taught all the children a little good morning song. Through out the morning I hear Michael and them singing it to each other. He is happy when they are here. Their energy is contagious.
November 12, 2001 ~~ Stress takes it's toll
I have a bad cold, with a heavy cough. I am beginning to worry it may be bronchitis, just hate to go spend money on the doctor to find out. Hope it will pass. I think maybe the stress is making me sick. I think I am handling everything, but my body keeps forcing me to slow down.
At Weight Watchers this week I did have a loss. I had a few good days and it showed. I keep trying, that is all I can do. I am struggling, and the reassurance that I am under stress is no comfort to me. I seem to not be beating any of the monsters, even those in my own head.
Holidays
The holidays are coming... It is strange I usually look forward to holidays. I relish the costumes, the turkey, the Christmas tree and Santa. This year there is that heavy curtain hanging over the stage of our lives. Will this be our final Thanksgiving, Christmas, New year together? Will the curtain fall, this insidious tumor ending traditions in it's wake. I cannot imagine holidays without Michael. This saddens me.
The Store
Remember the neighborhood store from when you were a kid? The store where you always felt like you were among friends? We are fortunate enough to still have one of those "neighborhood stores" where we live. It is literally across the street. It is better the little market down the street as it is a full service grocery store with deli, fresh produce, and a wide variety of everything. It is one store in a small chain called Super Max. This store is a corner stone not only to our neighborhood, but our lives. There is not a day goes by that one or both of us do not make a trip over to the store. When those doors whoosh open and you step onto the shiny tile floor, shopping is never a chore. This store has an atmosphere that welcomes you in, to relax, take your time, feel at home. The employees are the pillars of this establishment. There is Joe the manager who is always laughing smiling and caring for his customers. Joe knows us by name, he knows what our lives are doing, and if we need anything, Joe can find it. Joe is so committed to his family of customers that one day it was two hours before opening and Michael was doing the day care thing on his own, he had forgot to get baby food. Joe opened up two hours early so Michael could get food for the baby. Walking through the door, you are liable to get a friendly hello wave from Sonya, Sandy or Stella manning the check out stands. These ladies are a ray of sunshine, always smiling and cheerful and are always there to ask "how is everything?" and chat about how things are going, because they really care. This store is our "big trip" out now, and the things that makes it so is the people who work there. This is one of the last places where you find friendly home town service from a full service store, and people who care.
November 16, 2001 ~~ It was a good week
I finally broke down and went to the doctor on Tuesday. the "bronchitis" was getting bad I could hardly get a good breathe. Well I guess I should have tried to get a medical degree before treating myself. the "bronchitis" is asthma. I saw a Physicians assistant at Doctors on Duty and with one listen she knew what my problem was. She plugged me into a Pulmo aide for treatment with Albuterol, the first helped some but, not enough, another time with the addition of Intal and I was breathing again, better anyway. She wrote me prescriptions for Albuterol and a cough suppressant and sent me on my way feeling much better, just a little foolish for waiting so long.
Radiation is done! Thursday was his last zap. We celebrated by hanging his radiation mask on the wall, and having Isaac and Paul over for dinner. The boys brought strawberry shortcake fixings and we all celebrated, another milestone passed.
I talked to Crisper Villanueva Friday, the Medi Cal is Approved! This is great news. Crisper has been very helpful and patient with me. I have called him weekly to check on Michael's status. He has always been there with an encouraging word, and caring attitude. When I thanked him for all his dedicated efforts he said I'm "just doing my job". I let him know I know people who "just do their jobs" he does far more than that, he does his job with care, compassion, and honor. He is a state worker who truly cares about the people he deals with. We are lucky to have people like Crisper working for us.
Sometimes Michaels acceptance of our life makes me have to stand back and laugh. Today he handed me a scribbled note and grinned as he informed me. You will date and marry once I am gone. Yeah sure was my resonce... As I read the paper I saw it was a personal ad. Still grinning he tells me, I knew you would not sell yourself well, you just do not know how good you are, so there is the ad you will place. Michael then broke out into laughter and said hey run it now I can screen my replacement... Shocked but ok I get the humor I said no that is creepy. I do promise to run it, as soon as I die he throws in, yeah soon after.
the ad
I am sandy I am intelligent on many levels, but my only degree is in life. Enthusiasm is my middle name when I am excited about something. Caring is in my nature, I love to cook and make life nice for those around me. I care about my friends, in return feeling important in their lives is kool too. I am not afraid to show affection, you are more likely to get a hug than a hand shake from me. I like things easy. I am self sufficient, can enjoy my own company, but long to have someone to share with. I am not perfect, but I like to try and be. I have three small pug dogs and a son in college. My favorite things are simple. Borders for coffee, Swimming, Camping, Walking on the beach, Exploring flea markets,shopping for junk, zoo's, Amusement parks. I can have fun in San Francisco as well as San Jaun Bautista. I guess the best word to describe me is diverse.
November 28, 2001 ~~ Since then
Here it is over a week later. Michael has not had any doctors appointments now for two weeks. He has finished his radiation and right now there is an eerie calm over us. Sometimes too calm like stagnant water. We tried to wean him off the Decadron but his head hurt too bad to continue the weaning, he will remain on 12 mg a day for right now.
Thanksgiving has come and gone. We started our day at 4 A.M. doing something Michael and I have never done. We stood in line with the other bargain hunters at K Mart. They had a Thanksgiving early morning sale, opening their doors at 6 A.M. to unbelievable bargains. We thought what the heck we would try to snag one of the seventy dollar DVD players, so we were in line at truly o dark thirty. It was cold, good thing we were dressed warm, we were happy, we were actually having fun. We talked with the people around us joking about what the mad rush would be like. The doors opened we rushed in with everyone else. Got to the electronic department to find the seventy dollar DVD players, were gone. We laughed so hard, it truly was funny. We wandered around the store watching people scurry like frantic ants in a flood. It was like moving in slow motion as we strolled, just observing, calm as we watched the chaos. We went home as the sun rose, got warm in our home, then crawled back under our covers content with our adventure.
Our son, my mother, Michael and I shared a Thanksgiving meal of Turkey and all the trimmings, with the addition of a favorite of Michael and Paul's, pasta carbonara. We watched home movies on a 1950's 8 mm projector and laughed at the past as the projector clicked, clanked and clambered noisily through the silent frames. It was comfortable and happy, a nice Thanksgiving day.
Michael and I put up our Christmas tree the day after Thanksgiving. We bought the Christmas presents for those we love. We booked Santa for our day care Christmas party. We are doing our best to pretend all is normal in our lives. Then we are reminded where our lives truly are, Michael as a head ache. It started yesterday, he still has it this morning and Tylenol is not helping, the headache causes his right eye to twitch, I called Dr. Kim's office many times over the last few days, no one has called me back. My stomach tightens at his pain, and I am reminded of the mortality of our situation.
November 29, 2001 ~~ The calm is shattered
All was going right along this morning as "normal". The children played, the dogs barked, the coffee brewed. My mother came over at 10:30 a.m. to pick up the 8 mm films so she can have them converted to VCR tape. I was sitting at the table with the baby on my lap feeding him, my Mother was sitting across from me visiting, the children were in their toy room playing, Michael was fixing the children's lunch plates of ham, pasta, carrots, and banana's. Michael started to leave the room to get the children for lunch at 11am.
As he started out of the room, he tapped my shoulder, turned and looked to me.
I could tell something was very wrong, I asked him if he was ok, I could see his face contorting into configurations that were unnatural, he could not speak, the fear in his eyes spoke volumes . I handed the baby to my Mother and guided him to the hallway where I had him sit, then lay down. His face continued to contort, his limbs twitched and jerked, his face grimaced, he stared as if out of his body, frightened at it's betrayal. It lasted no more than 60 seconds, most possibly the longest 60 seconds of my life. I could do nothing but stroke him and tell him I was by his side. My Mother got me the phone half way through the seizure and I called 911. The ambulance came, as they walked past the children's play room to where Michael was. Vincent instructed them in a loud voice "you take care of our Michael he is sick." It lightened the situation a lot and we all laughed. The paramedics examined Michael and decided he should be seen at Natividad Medical center. Michael was not thrilled with the prospect of going to the ER, but it had to be done. As the EMT's wheeled him out, the children called to Michael, "bye bye Michael get better, and we will have cookies for you when you get home".
Michael got to the ER at 11:47 am. My mother went over to the ER to be with him after dropping our two day care boys of at kindergarten for me. They checked his dilantin level it was 6.4, and they did a CAT scan.
Paul and Isaac went over to the ER to check on Michael at 12:30 p.m., they called me when they were told there were too many people at his bedside and let me know he wanted a barbecue beef sandwich.
I got to the emergency room at 2 p.m., sandwich in hand. Shortly after I arrived the nurse came over and gave Michael 200 mg of dilantin to up his level. He will now be taking 600 mg of Dilantin daily (I think). I had him take his Dexamethasone as they were not going to give it to him, without a big hassle.
The nurse came, wrapped Michael in warm blankets and took him to get an enhanced MRI at 4 pm . Michael later giggled and told me how he kept falling asleep in the MRI machine and messing up their scan. I guess they made him TOO comfortable.
While they were scanning Michael I went down the hall to the financial aid office to see how the medical is coming. Audra said she got it back from the state on Monday and just has to finish working it up we should be good to go by next week.
The doctor seemed shocked to have found "tumors" on the MRI, this after I had told everyone in the ER repeatedly that Michael had a gbm diagnosed in September 2001. I could not believe it when the doctor acted like it was all news to him. I brought our care binder, did no one pay attention to what we said? Then he kept referring in plurals when speaking of the brain tumor, and there should only be one left, and it should be shrunk/gone. At least I thought the radiation was supposed to get rid of/ shrink the tumor that was left...
At 8 pm Michael got so restless and agitated I told the doctor "we know he has tumors, if you cannot tell us anything we do not already know, he is tired of waiting, please release him, we will follow up with the oncologist Monday." The doctor released him go at that point. We really do not know anything more than that the dilantin level was too low... however no one said why all of a sudden his dilantin level dropt, or what it should be, or how many mg's he can max out at.... so after 8 and a half hours we still have few answers, and now more worries, but Michael is home and happy.
In the light of day
I got more answers from my friend Sandy N. on my email support group for care givers of brain tumor patients, than I did from doctors yesterday. she let me know 10-20 is a therapeutic dilantin level. She also reassured me what they are seeing could be necrosis on the MRI from where the tumors were, or even from the radiation. I also conducted some research of Dilantin levels on my own too, and found out that the Zantac Micahel takes for heartburn can alter his Dilantin levels too. Ok now I am armed with information that can help him. We are going to get through this too.
Are you my doctor?
When I was trying to figure out from the myriad of doctors we now see who to call, I found myself wanting to ask, are you my doctor? What ever happened to the family doctor the one that handled everything? I feel like a leaf in the winds of medical bureaucracy. As I called one to another and was told over and over, "I am not handling your case at the moment", I had to think, too many names, too many numbers, too many specialties, all these doctors and none are his. This morning as we sit wondering if we need to leave the Dilantin at 600 mg, I again ponder who to call and ask. In a final act of desperation I call Doctor Adelheid Ebenhoech, she was our family doctor before this insanity started. I am told, I would love to be but, I cannot be your doctor now, we do not accept your insurance nor do we practice at the hospital you go to. So I have to ask,
ARE YOU MY DOCTOR?
Another day, another drug
I talked to doctor Aziz's office and found out that Michael should not stay on 600mg of Dilantin a day, it is too much. Doctor Aziz has ordered 250 mg of Depakote to be added to Micahel's prescription regime to bring up his Dilantin level, and ordered blood work to check the Dilantin level in two weeks.
Screamer
Michael gets a screamer... One nice thing about the seizures Michael has had, is that he felt them coming on. The last one, I was close by and he was able to get my attention to help him, before it hit. During the first one he was alone in the bedroom "sleeping", I was out of earshot so he had to go through it alone. In order to help us both feel safer, we went onto the internet and found a personal alarm for him to keep with him. This is a great little device about the size of a deck of cards. It has a pull cord with a pin at the end. When the pin is in place the device is quiet. When the pin is pulled out (very easy to do) it lets loose with a 130 dispel alarm to alert someone you need help. Michael now carries his little alarm box with him, it gives us both an added sense of security.