December 2001 -- Chemo and the holidays


December 3, 2001 ~~ Doctor appointment

We saw Doctor Kim for a brief follow up visit, December 3rd, 2001. I told Doctor Kim of the emergency room doctor on Thursday speaking in tumor plurals, she said not to worry she is sure he just misspoke. She checked Michael out, gave us refills for his prescriptions and scheduled another visit for January 5, 2002. Doctor Kim let us know she will be passing our case over to Dr. Aziz for the Oncology part of this now. She also told us that we need to find a primary care doctor for Michael...

December 4, 2001 ~~ HEADACHE 

Headache, again. I called doctor Kim's office. Thirty minutes later I still had not got a call back. Michael's head was starting to hurt more, and his face was beginning to droop on the left side. I called and made it clear that this was progressively getting worse, and It was imperative that I talk to doctor Kim very soon. The staff person said she would wait outside the room Doctor Kim was in and grab her for me. Doctor Kim called back in five minutes. She said she thinks it is brain swelling, but really had no idea as to what the cause of the swelling could be. She increased his Decadron, to control the swelling. He will be taking 4 mg four times a day now. If that does not do the trick we can up it to 6 mg four times a day, and if that happens she will order another MRI to see what is going on in his head. Michael took the extra medication and within an hour the headache was easing up. WHEW!

Weighing what is important

I was supposed to go to my Weight Watchers meeting tonight at six. That would mean leaving Michael alone for an hour and a half. I am not comfortable leaving him unattended. I have decided to only go in once a month to weigh in for a while. At least until things settle down.

$$$$$$$$$

The bills for the original "episode" keep rolling in. I have told everyone that we will have our Medical soon. I call them each month and tell them where we stand, where the paper work is and so forth. I sent the application to them so they know we have gotten the wheels rolling. I ask if they could please be patient, instead of the compassion and understanding I hope for, I get threats of law suits and collections... Patience, that is just not a concept some people can grasp. Oh well, I can only do what I can do.

We have a doctor!

Michael has a doctor! Well, January 16, 2002 he will that is. He will be seen at the Natividad health clinic on Blanco circle by doctor Acton. I am relieved, and am sure the oncologist can handle our case until then.

Doc in the box here I come

Another trip to Doc in the box for me... My right ear is so plugged I cannot hear out of it. My mother came and helped with the children and Michael so I could go get it taken care of. Jill, the Nurse Practitioner, looked into my ear my left ear, that one looks good, then into the right, and yep yep it is infected. She is a wonderful kind person, she remembered seeing me before Thanksgiving, and asked if the asthma had all passed. I said yes, just this. She gave me some samples of Omnicef and flonase so I could get home to Michael faster and I was on my way, and it is only Wednesday!

December 6, 2001- Streets of Bethlehem

Thursday, finally some family fun. Michael, Paul, Isaac, and myself went to a holiday event put on by the First Baptist church here in town called streets of Bethlehem. They reproduce Bethlehem on the night of the birth of Jesus. It is amazing they do a wonderful job. We all had great fun as we walked through the streets encountering Roman soldiers, dancing girls, peasants, and even got to see Joseph lead Mary through the streets on a donkey. There was so much to see, the night was perfect, the air was crisp, there were wonderful smells and colorful costumes. Isaac made me a necklace at one of the jewelry stands, five little beads on dental floss, I will cherish it. I am glad we got a chance to experience this wonderful production. After streets we all came home and had cherry vanilla ice cream for dessert. 


December 7, 2001 ~~ Doctor Aziz

Friday is finally here. We have an appointment with Dr. Aziz at 11 A.M. Paul and Isaac arrived at 10 A.M. as they have offered to watch the children for us. I so appreciate these two wonderful young men, they are a great help. We walked into Dr. Aziz's new office, it smelled of fresh paint, and new carpet. The friendly face of the receptionist welcomed us in. Michael went and sat down to "read" a magazine. It was not long before the nurse was calling us back. His vitals were taken his weight was good at 210. His Blood pressure was 136/90 in his left arm and 150/98 in his Right. Not too bad. We sat there in silence in the freshly painted new examine room and waited for the doctor. After just a few minutes Dr. Aziz came in, he went over Michael's medications with me, and we discussed the recent seizure and headaches. He still thinks that it is now time to start Temador. Next Monday Michael will get a blood draw so the doctor can have a base line to work from and he will also have his Dilantin level checked at that time. We will start the Temador on Tuesday with 300 mg a day in the morning for 5 days. Go for blood work after three weeks, then start round two, 400 mg per day for 5 days with possibly the addition of Thalidomide. We will see Doctor Aziz again in a month.

We stopped at Jack in the Box to pick up lunch on the way home. I ate my fahita pita and got on the phone to call the Scherings companies commitment to care program. I needed to let them know we got the go ahead from the doctor, it is time to start the chemo therapy. 

December 7, 2001 ~~ Rick Butler 

I spoke with Rick Butler Friday December 7th, 2001. he is a very kind and compassionate man who let me know he will get the drug out to us Monday, and he will call Tuesday to make sure we got it. He will then call weekly to check on Michael progress and answer any questions we may have. He had reassuring way about him, and was very helpful. He gave me his direct toll free number in case I have any questions in between times. 

Weakness

I have been noticing weakness in Michael's left side escalation over the last week. Every day it becomes more evident to me. He puts up a brave front for everyone else around us, so I do not think they notice, which is good for his dignity. I have noticed he does not used his left hand much any more, and his right had shakes very bad when he uses it. Feeding himself has become quite the chore, and he has given up on writing all together. He tried to cut his fingernails on his right hand today, but did not have the strength to do it, so I will take over that job for him. His left hand becomes deep red when he is cold... this is new. The muscle tone on the left side of his chest is going, this is only evident to me, as I am the only one of late to see him without a shirt on. His eye sight is deteriorating, and he is being forced to use a magnifying glass to see things. He has been falling asleep on the couch a lot, and tires very easy. I mention these things to his doctors, they do not seem to concerned with this new development. Michael has developed a calm demeanor as I think he accepts his weakness and has to ask for help, this is ok, I will be here for him.

And it is only Saturday

  Saturday morning December 8, 2001, what a rude awakening I got. Michael once again got up before I did. He was out in the living room, eating and watching tv. his screamer on, so I was content to stay in bed . It was 7:30 A.M. and I was fading in and out of sleep, more resting than sleeping. All of a sudden Michael staggered into the bedroom, his eyes pleading with me. He is at the verge of another seizure. I jumped up put him on the bed and laid next to him comforting him, talking calmly waiting for this to pass. He twitched and jerked for a full minute and a half. At last it subsided. He could speak, and after about five minutes he could sit up. Willie his dog laid on his head through the entire thing and when it was over licked his face. I guess it is time to add that other 2 mg of Decadron. Now he is just tired, and sleeping under a big fluffy down comforter on the couch, Willie will not leave his side.

Sunday brings shopping and garbage

We went grocery shopping to Food Max Sunday, December the 9th. We went at 3 A.M. This is a good time to shop, there are few people in the store at that time, and the graveyard shift is friendly. Michael loves shopping it is a moment of normal for him. For the first time since this happened Michael was unable to carry groceries into the house from the car. I made light of it, at least he got to go out and "help" me shop. I am glad we got out together even if it was just to the grocery store in the middle of the night. 

When it came time to put out the garbage, tonight, Michael asked for help. He was unable to maneuver the cans down the driveway to the curb. sigh~~~~ I know this makes him feel less than and that breaks my heart.

December 10, 2001 ~~ Michael sleeps through the night

Michael slept through the night last night for the first time in months. I know I should be happy, but this sudden need for sleep worries me. Must keep my chin up.

December 10, 2001 ~~ Large Lesion

Dr. Kim and I talked this morning. She got the MRI report back, it is not good news. There is a "large lesion" at the surgery site. She said it could be damage from radiation. If it is, that will require surgery. It is most probably tumor growth, leaving all they can do being Temador. They are going to try to get a P.E.T.. scan to determine what the next step is. Dr. Kim upped Michael's Decadron to 6 mg four times a day. She did tell me in a very comforting calm way she is fairly certain it is tumor. I thanked her for being honest, I do appreciate it. I told Michael, he is very quiet, the house is solemn. He then became very tired and laid down for a two hour nap. I guess the ER doctor knew something we didn't. Should never presume you know it all.

medical

9 A.M., December 10th, 2001 and Audra is "working up" the medical this morning from 9 to 11. I can hardly breathe.... Audra will call doctor Kim when she is done doing our case. Whether he gets treated depends on this "work up".

NOON, It is APPROVED!!!!! Yippee!!! Our share of cost is $1898.00 per month, I am not sure how we will do this, but I know it will all work out. I felt bad for Audra she worked so hard on our case even though she was at work sick today. I told her the share of cost was ok, I hope she believed me.

Thursday the 13th I called all the August bills and let them know the Medical is in place. I also talked to "Mel Flores" at SVMH, he was as usual his cold uncaring self. I feel good about the conversation though, I at last got to tell him directly that of everyone we have delt with over the course of this illness he is the worse, and most cold blooded individual I have encountered. He did not care, but that is ok, I just needed to tell him to clear my mind. I have hope, maybe, just maybe my comment will sink in and he will treat the next person he comes across with a little compassion because of what I said.

psychosomatic release

   My ear is still plugged and I cannot hear out of it... maybe it is psychosomatic... a way of "not hearing" what is about to happen.

PET scan is scheduled

Michael gets the P.E.T.. ( Positron Emission Tomography) scan Thursday the 20th at 1 P.M.. It has to be done at Salinas Valley Memorial Hospital. I am not thrilled with that, but it is not like we have much choice. I cannot forget we were told we should not come to this hospital for treatment. Michael too remembers, and is afraid of what will happen if Mel catches us at the hospital. Lets just hope we do not have to deal with "Mel".

December 11, 2001 ~~ UPS brings hope in a big brown truck

The Temador arrived by UPS Tuesday morning. Michael started it right away. 

He puked all afternoon. Michael swears it was the spaghettis sauce he wolfed down before he took the medication. He said it leaves a bad taste in his mouth. I went out at seven and got him some mash potatoes, biscuits, and gravy from KFC, this seemed to settle his stomach.

Temador is hope, and UPS delivers it in their big brown truck.

Rick Butler called the day after we started the Temador to see how Michael's first day of chemotherapy went. Rick is as always kind and compassionate. He makes me feel safe and cared for. I told him the second day was going much better, Michael is just tired, not nauseated. Rick said that is very normal. He told me if we have any questions or problems not to hesitate calling him.

Third day of Temador went well... a little nausea and fatigue, but over all ok. 

Last day of Temador for this round Saturday December 15th, 2001. The day seems to be going ok, Michael slept a lot but is holding up pretty well. We made it through he first round of Temador without much incident... This is good.

More money

December 10th, 2001, I applied for a second mortgage. We will need the money to cover the medical cost, and our bills. I hated to do it, but we need the money to make it. I talked to the loan officer seems to be going ok. I asked for fifty thousand, they may give it to me at a 15% interest rate. The pay back will be over 15 years and only five hundred and forty dollars a month. I think I will be able to swing that. 

December 13th, 2001 the loan is APPROVED! Billy Boulton called and gave me the approval. He is a nice cheerful young man, seems eager to help. The appraiser called and set up the date of December 17th to come appraise the house. Billy says it has to appraise at 385,000, I think it will. 

The notary is supposed to call in the next few days to set up her appointment.

I am so relieved, financially we may be ok.

One less worry. It is Saturday... the notary came so I could sign the loan papers, take a breath, it is moving forward.

Visitors?

Michael's mother wants to come "visit" Michael. I called her and laid down the law. She is welcome to come see her son, but there is to be no whining about her life or health. I will not tolerate her upsetting him or making him feel guilty for not "taking care of" her. When they spoke he did find out she has not told his other family members about his condition. No wonder none of them have contacted him. 

December 14, 2001 ~~ More Seizures

It's Friday, so lets end the week with another seizure. This one occurred at 6:18 A.M. and lasted 2 minutes. it was mostly limited to facial movement with very small arm tremors. After the seizure, everything was ok and Michael had a breakfast of soy bacon, eggs over easy, hash browns, and toast. at 7:20, he is sleeping on the couch. Called Dr. Aziz at 9 A.M. to let him know. The doctor increased his Depakote to 500 mg in the morning and at night, leaving all other meds as is. Doctor Aziz is going to refer us to Doctor Wahl, back to where we started.

7:21 P.M. I guess this week was not really over after all. Michael let me know he had a "seizure taste" in his mouth. 5 minutes later he felt the actual seizure starting. The seizure was mild mostly his facial muscles and hands were involved, it did however last 3 full minutes. When it was over he sat up was very fatigued and got onto the couch to rest. Not sure what brought this second one on, could it be as he said he "smoked too many cigarettes today", or was it that I took him out this evening for a car ride. We went and got gas, went to the bank, and he waited with the dogs as I ran into the grocery store... Who knows, I am going to try not to second guess this and just go with the flow. Ok this HAS been a l-o-n-g week.

December 15, 2001 ~~ Paul

Paul went and did some grocery shopping for me as we are pretty much house bound at this point. He brought home a pizza for us all to share, and even went to rent a couple of DVD's for us to watch. Paul and I had a chance to sit down alone and talk about our feelings and fears, I think it was good for both of us. He set up a separate web page for our brain tumor story, he is such a whiz when it comes to computers. We have a good son I am very proud of how he is handling this and how loyal he is to his Mother and Father.

Monday night dinner and Movie

It has become somewhat a tradition that each Monday night Paul and Isaac come over for dinner. After dinner we all watch a DVD on Michael's big projection television. I enjoy these evenings so much and I know Michael does too. They are not fancy just a home cooked meal served in the living room with ice cream and DVD for dessert. I am pleased the boys find the time to do this with us. It is a good time.

December 17, 2001 ~~ I thought I would be dead by morning

As we laid in bed getting ready for sleep Michael told me "I thought I was going to die last night, and if not then, this morning". His comment shocked me, I asked him why he felt that way and he could not tell me anything other than "I just felt real fucked up". He said he did not want me to feel bad if I woke up and he was dead, for that meant he died just as he wants to, with me by his side. He made me promise I would not "sit home and mope" when "this is all over". He also made me promise to go back to Weight Watchers and finish losing wieght. Then he told me he has written me a personal ad becasuse as he puts it I far underestemate my own worth. He wants to run it now to screen mhis replacement, I declined his generous offer, but I promised I will not freak out and that I will know in my heart he died happy, and I will do the things he asked of me. We both dozed off.

December 18, 2001 ~~ Long night

Michael's knee's ached all night, last night. He was up and down every hour. We think it is because he is on 24 mg of Decadron he is taking. It is a steroid and has side effect. He did regain some strength in his left hand, which I think is because of the steroid. I am afraid to think anything different.

December 18, 2001 ~~ Family and Friends

Michael thought it was time to call family and friends and tell them his condition is deteriorating.

~Marsha, Michael's sister ~

Marsha was not aware of the seriousness of her brothers illness. I let her know and we traded e mail addresses. She had asked Doris earlier in the illness to have Michael call her or email her. She was told Michael did not have e mail, and Doris never told Michael of his sisters desire to talk to him. 

~Pam ~

I called Michael's friend Pam and told her Michael was not in a good way. I told her of his latest struggles. She is going to come over tomorrow morning for a visit before work.

Wednesday, today Pam came to visit with a plate full of her homemade gingerbread cookies. The visit did Michael a world of good. He looks better than I have seen in weeks. We got a good laugh when I told a day care parent who was dropping of her child that Michael had company, Pam who was the "best man" at our wedding. She looked confused and said and "now your best man is a Pam?" I laughed and said she was always a Pam and even pregnant at our wedding, just she was our best man. We all got a giggle out of that one. I think Pam was just what we needed.

~Cullan~

I then talked to our good friend Cullan and told him of the latest developments. He will be down our way around Christmas, I told him we will all get together then. 

I let Michael know his friends are there and coming to see him. it seemed to raise his spirits.

~niece Kimberly~

Thursday Michael got an e mail from his niece Kimberly, even though now that she is all grown up she goes by Kim. She apologized for not getting in contact earlier, no one had told her he was sick. Michael was very happy with the e mail. His families concern for him, warms his heart.

December 19, 2001 ~~ Time for Doris to move

Just when we are having a good day I get a call from his "mother". She wants to know how old Paul is. I tell her 21, she tells me she wants to give him power of attorney, so he can take care of her affairs. I told her NO that he is too young to have such responsibility. She then starts whining at me, about how the doctor told her yesterday she has lung cancer and only two months to live. I told her I have to go Michael needs me. I call my Mother Judy and blow off steam before I call Doris back and say something I will regret. Judy talks me down so that I can handle this situation with some grace. Judy calls the doctor for me. She asks how can they tell someone that they have two months to live without even doing a biopsy? The staff person told her the doctor would not have told her that at all. Judy calls me back and lets me know she is just crying wolf. I fume! She is just trying to manipulate people again. I guess she feels she is not getting enough attention with Michael ill and this is how she will be able to get it. I am angry! How dare she do this to me with Michael so sick! How dare she try to put this undue worry on him! Her selfishness angers me to the core. I talk to my Mother till I calm down, then I call Doris. She answered the phone sounding not nearly as ill as she did when she called me, actually quite chipper. I told Doris since her health is failing she should call her daughter Marsha and have her come down. Marsha can help her wrap things up down here, pack up her apartment, and she can move to Washington to be with Marsha and her family. She says she does not want to live with Marsha or in Washington. She tells me again how she does not have that much longer to live. She then starts telling me how the doctor told her she will need to be in a convalescent home soon, to die. I lay down the law. I tell her there is nothing I can do. I tell her if she were to fall over dead today I would just call Marsha, I would not even tell Michael because he does not need that stress put upon him. I try to make it clear, I have enough on my plate and will not be pulled into her drama. She tells me she will think about moving to Washington and we end the conversation. But before she hangs up she tells me to have Paul come over to her place to get a box of candy, and show her how to work the vacuum cleaner...

December 20, 2001 ~~ P.E.T.. scan

Doctor Kim set up a P.E.T.. scan for Michael so we can see just what is in his head. His appointment is at 11 A.M.. He cannot eat anything for 6 hours before the test, and can't have anything with sugar or caffeine this morning before the test. He has to dress warm as the test is in a travel trailer and is very cold. Paul and Isaac will watch the kids for us and we are all set.

I took Michael for his P.E.T.. scan this morning at 11 A.M.. I am glad we left early for the appointment as there is no adequate parking near the scan trailers. The closest parking was a block away in the main hospital parking. Michael did not want to go into the scan registration trailer alone he was afraid Mel Flores would come tell him to leave, so we parked the car together. We then walked in the rain back to the scan trailer. I felt bad as he was in no condition to make that walk. Shortly after registering Michael for his scan a technician named Guy came out and took him back. Michael was afraid to leave my side for his scan. I asked if I could sit with him, or even wait where he could see me. They would not let me go with him. I told Michael it would be ok and I would be right here waiting when he got back. I felt so bad, it was like letting my child go off into the unknwon alone and frightened. For the next two hours in the waiting room reading old copies of News Week and Mademoiselle magazines and watching the rain pour outside the trailer. I had to think as I was sitting at this "state of the art" hospital, it felt more like a trailer park. At last Michael was done. I went to the car alone and brought it back for him, as he is now very tired and I do not think it would be good for him to walk a block in pouring rain to get to the car. We stopped at Jack in the box and got lunch for Paul, Isaac and us and headed for home. Done, at last, time to rest and wait. Fingers and toes crossed for luck. We will not have the results till after Christmas, our joints are going to ache for sure.

December 21, 2001 ~~ Santa pays a visit

Every year for the past 19 years Santa has come to visit our day care. It has always been a great family event, full of laughter and a coming together of all our extended day care family. This year will be no different. Michael slept most of the day so he would be up to the excitement. He is very worried about having a seizure in the middle of it. I helped him get dressed, then put on my own Christmas dress and we were ready to party.

Santa arrived at 5:15. He came in through the Kitchen with a bag FULL of gifts. The children were thrilled. Everyone of them right down to our youngest 1 year old Daniel got on his lap and opened their present. They all loved Santa, the air was full of giggles Santa was a big hit. In his sack t here were dollies, to dinosaurs, Bob the builder, and mosaic art craft kits. The children were all happy with their presents. There were camera flashes from all around the room. I even video taped the whole thing. Michael had a great time, he visited with everyone. He showed of my doll house and sampled the home baked cookies the parents had brought. The house was full of love and it felt like it had every year before. We had a wonderful time and for that hour there were no brain tumors, no doctors, no fear. Santa truly is real he bring normalcy to a confused world.

Michael and me

Paul, Michael, Santa, Me, Isaac

From ALL of us to all of you, HAPPY HOLIDAYS!


December 25th, 2001 ~~ Christmas

Christmas eve Paul and his friend Danny came over for spaghetti dinner. It was very nice. I had a stuffed TY beanie baby Monkey for Danny, as he collects them. He was real happy with it.

Christmas day our friends Cullan and Jan were in Monterey. I drove Michael the 20 minutes over to their hotel. We stayed and visited for about 45 minutes. Michael held up pretty well. We came home I made him breakfast and he went back to bed til one. 

At 1:30 Michael called his mother to ask if it would be all right to bring over the Christmas present we got her. She said ok, and "bring me something to eat too". I drove Michael to his Mothers place. I waited in the car as he went to the door, bearing spaghetti with home made sauce, and a small wrapped package containing a silver pin I had got from Avon for her. He looked so frail as he stood on the stoop waiting for her to open the door. It made me sad. I prayed she would be kind to him. Michael stayed for about 15 minutes. He came out empty handed. Yes his mother got her son nothing for Christmas, not even a candy bar. She told him she had not been out... funny Kathy thought she took Doris to Wallmart just last week. oh well ~sigh~

This afternoon my Mother and Paul came over for Christmas dinner. I made a big pan of lasagna and garlic bread. For dessert we had peppermint and lemon supreme pies from Bakers square that my Mother had brought.

My Mother got everyone road side assistance cards from AAA. Paul has an older car so road side assistance is a good gift for him. It is great for us because Michael will be little help if we should have car problems at this point. Best yet she gave Michael a porcelain Precious Moments guardian angel for over the bed, to protect him. I went right in and secured it to the headboard. We gave My mother a huge wind chime bell, guaranteed to rust. She liked it a lot and said she will think of Michael every time it chimes. Michael assured her every time it rings it will let us know he is there with us.

** two years later... 
the bell sits silent most days even in storms when her other chimes are ringing.
but on his birthday, our anniversery, when I post about his page, and when I am upset ot thinking of him, the bell rings it's little sides off... 
My Mom always calls and tells me. we laugh about it and she even says it creeps her out a little how accurate it is.

thanks for making my angel happy enough to swing in the breeze. 

We watched more home movies that my mother has had transferred from 8 mm to DVD. After dinner Michael, Paul and the dogs napped, my Mother and I visited. It was a nice Christmas. 

10:15 P.M., I guess we really did have a big day. Michael just had a seizure. Only one minute, we handled it together, and it is still a good day.

December 26, 2001 ~~ P.E.T. scan news

Not great news... The P.E.T. scan showed "activity". The lesion is not radiation narcosis, it is tumor growth. The only thing we can do for this is Chemotherapy. Doctor Kim gently told me the tumor is 4 cm. It is mostly on the outside of the area they took the original tumor out of. The original tumor you may remember was 1.5 cm.. I have to wonder... what kind of radiation did they use the miricle grow variety? I Feel like we just ran 100 miles on a treadmill facing a wall. Chin up... This is bad but we will get through it. 

December 26, 2001 ~~ Decadron taper and new drug schedule

Doctor Kim wants to taper Michael off the Decadron, the drug he takes for brain swelling. This drug has some nasty side effects so it is best to take as little as possible. Here is our taper schedule...

4mg 4 times a day 5 days (12/26-31)

4mg 3 times a day 5 days (1/1-5)

4mg 2 times a day 5 days (1/6-11)

2mg 2 times a day 5 days (1/12-17)

2 mg in the AM 5 days (1/18-22)

Doctor Aziz wants wants to add Thalidomide to Michael's Chemotherapy regime, since the tumor grew. I explained we cannot afford the drug, he is going to try to get us on a compassionate care program so Michael can have it. He is worried about the continuing seizures and wants Michael to see a neurologist ASAP. He is going to try to get us into someone. He also said we need to change the anti-seizure medication schedule, in a hope of controlling the seizures. 

 Michael will need blood work done next Tuesday to see what effects these changes have. Breathe...

December 27, 2001 ~~ R.A.F. RUN AROUND

Yesterday doctor Aziz (oncologist) tells us Michael needs to see a neurologist... His office will set it up, I sat back on my laurels. 

Today as Michael sleeps, I have still heard nothing. I call Doctor Wahle (neurologist) to see what I have to do to get an appointment. The woman was very nice and explains they can get him in next week but first I need an R.A.F. to come see them, from our "primary care physician" there is that word again. I tell her Michael is special needs because of his diagnosis and our share of cost, and does not need a R.A.F. that I was told by central coast alliance he can go to what ever doctor he wants. She tells me she is sorry I must have misunderstood, he does need the RA.F. that is just how the system works.

I call Doctor Aziz's office as that is the only doctor Michael is seeing right now, to see if they can do the R.A.F.. I get a person on the phone like I have never had at this office. She tells me our "primary care physician" is at the circles. They have to do the R.A.F.. since Michael is M.I.A.. I tell her he is not M.I.A., he is Medical now, I had told the office of the change. She all but called me a liar, snapping "it is not in my computer. I offer her the number she tells she cannot take it on the phone I have to bring it in to her. I emphasize to her the doctors at the circles have never even seen Michael. When I called in November the earliest I could get him in is January 16th. She tells me Michael was seen at the circles yesterday, she had made the appointment herself, she spoke with Sarah. I explain no one told us about an appointment yesterday, and we went to none. She continues with the circles are the ones who sent Michael to Doctor Aziz. I tell her No Doctor Prados at UCSF referred us. She argues with me telling me Doctor Aziiz's office does not even like taking medical, but they have too because they are the only oncologist in the area., so I guess i should be grateful they are even seeing us. I am so frustrated I cannot see straight. She then transfers me to Sandy.

I try to get straight what we are supposed to do. I explain to Sandy how the Central Coast Alliance told me Michael does not need a R.A.F., but doctor Wahl's office insist he needs one. She explains Doctor Aziz is on vacation and even if he were not, he cannot send us to doctor Wahl. I get so frustrated I start to cry, tell her Michael slept all but one hour yesterday and is still sleeping today, I mumble through tears he is dying and I do not know how to get through the red tape, and I hang up.

I am determined to get Michael cared for. I call the clinic at Natividad myself. I get a very helpful woman, I tell her what is happening. She has no record of us having an appointment yesterday. and cannot get us in til the 16th. I tell her the dire need she puts me through to the R.A.F. desk. She tells me they can refer us from there, even though they have not seen Michael, under the circumstances she is sure they will refer him, they have done it before. I thank her profusely for helping us. She transfers my call, and I leave a message at the R.A.F. desk. 10 A.M. I get off the phone and melt down. At 2 Noemi calls me back. She tells me we were a no show for an appointment yesterday, I tell her we did not know about the appointment, Doctor Aziz's office made the it but did not bother to tell us. They will not refer Michael out til they see him. ~sigh~ Noemi said she will work on it. I should hear back by 2 P.M. tomorrow.

December 29, 2001 ~~Hard times

This entry is hard to write. it has been a very long day. But again I have to be thankful to the powers that be for the people around me. 

The resolve

Michael got up this morning after a nights sleep exhausted. I made him breakfast got pills down him and put him back to bed on the day bed in the patio. As I was laying him down he tells me he is tired of fighting. He started to cry as he apologized for "being a quitter". Tears filled my eyes as I tell him he is no quitter and is the bravest person I know. I tell him it is not about quiting it is just about knowing when to call the game and go home. He tells me he wants the doctors to leave him alone. He tells me to call the mortuary and make arrangements. I am saddened but I do understand and tell him I will take care of it. I dry my tears and move forward. Sometimes I think I am afraid to cry, for fear I will never stop.

~Janet~

At 8 A.M. Janet comes in to drop her two little girls off to me for day care. She senses I am upset. I tell her about the P.E.T. scan, the doctor run around and Michael's new attitude. She just so happens to know the very doctor that can help us. Dr. Acton. I told Janet how doctor Aziz's office made the appointment for the 26th but did not tell us. I said I fear doctor Action hates us. She told me not to worry she would talk to her and left for work.

~The doctor calls~

At 9 A.M. Doctor Acton calls me! She tells me how Janet had talked to her. I could not catch my breathe I was so over joyed. I told her of the situation the seizures, the deterioration, the resolve to do nothing more... She told me not to worry she will get back to me. I hang up again feeling like there is a doctor that cares. 

A short time later Doctor Action calls me back. She tells me how she got the R.A.F. for Michael to go see a neurologist. I am relieved. After talking to Doctor Aziz's office she has also called in visiting nurses to asses Michael, and got the R.A.F. for that. 

Late this afternoon Doctor Acton's office nurse Karen calls me. Every thing is set up and ready to go. I thank her. She lets me know for future reference, Michael's is a special needs case and he did not need a R.A.F. with our share of cost he can go anywhere he wants. I have to laugh, I had told both doctor Wahle and doctor Aziz's office staff that yesterday. They would not check into it and told me flat out I was wrong. She laughs and tells me it is rare to have this special needs thing, but she has told them they should have checked as they have delayed Michael treatment by not doing so. It is ok... we will make it I can rest now, things are moving again, Thank you Janet and Doctor Acton.

The General Practioner, far underrated

I asked Doctor Acton at one point during our conversation, your a GP aren't you? She replies yes. I tell her I could tell, we have always only seen GP's this is our first time dealing with specialist. GP's care about your whole patient, family and all, not like the specialist who have tunnel vision and are no better than trained monkeys, when it comes to patient care.

~Paul~

I called Paul and let him know what is going on. He is very upset I can hear it in him. I comfort him and promise we will be ok. He is coming home. I tell him to drive careful. Once home and he has seen Michael he begins to calm down. I hug him firmly and tell him not to worry. This is all part of life, and we will all get through it ok. When Michael wakes up he expresses interest in truffles, Paul goes out to the mall to get him some with Danny and Stephanie. They will be good for him, help him sort through what is going on inside. 

~My Babies~

Through this all I still have my day care open. My children play. grow and never cease to delight me. When I get overwhelmed all I have to do is go crawl around and be a dinosaur with them, and all is ok again. Do they know they are my strength? Are they even aware of the courage the muster in me? These young ones are my reason for smiling. I love them each and every one.

~John~

I call our friend John and his wife Jeannie to tell them what is going on. I tell them we are ok, and handling it just shaken by Michael revelation that is soon over. John asks if there is anything they can do. He makes me promise to ask if We need anything. I tell him I will.

After I talk to the doctor I call John and tell him the ball is rolling again. He is happy for me. I tell him I have to go cause I need to order Michael Chinese food. He asks me where I am ordering it and I tell him I have do not know the name of the place, I have to look it up. John says tell me where I will tell you the name. I tell him the location, oh he exclaims "Dragon House", I am thrilled, that is it! I am so happy. Then he tells me call and order it and he will pick it up. I tell him to come by and get my credit card to pay for it, he says no not to worry about it he will get it. Tells me to get some Cashew chicken too, and he will be joining us for lunch. A short time later John is at the door with lunch. We all sit down to eat, Michael, John, Paul and me. It was nice.

Later this afternoon, John runs to Super Max for me to grab some hot dogs and buns for Michael's dinner. 

Everyone is here, taking care of us. I am so thankful it moves me to an unexpressible state of being.

December 29, 2001,Saturday

~~~~~~Seizures~~~~~ shake rattle and roll

Another seizure, 6:30 A.M. This one lasted three minutes. 

another at 5:40 P.M. this one lasting 2 minutes. Paul witness the second and handled himself very well.

~Hospice / V.N.A.~

Wes from V.N.A. called this morning. He will be out to asses Michael this afternoon between 12:30 and 1:30.

~Doctor Acton~

Doctor Acton called to follow up at 10 this morning. She is so nice we talked for about half an hour. She told me to call Monday to set an earlier appointment with her fro Michael. Just like a GP to care about her patients on the weekend.

~Wes~

Wes came at one thirty today. He is a very nice man with a soothing voice, easy manner, and he even smelled nice. He went over all the services hospice has to offer. Hospice has many services we can utilize. Wes had us sign papers including a D.N.R. order. Wes talked to Michael, Paul and me, as a family. I am glad Paul was included, it is important he knows what is going on. Wes took Michael's vital signs and was concerned the blood pressure in the bad arm is high. Michael's blood pressures were Left arm 150/120, right arm 140/90. He said that we would have a visit from Janet Coyne, RN. on Monday. She will be our Hospice nurse. She will do Michael's lab work for him at her visit. He gave us a packet of reading materials and was on his way.

 Michael's three rules about God

Michael has three rules when it comes to God. 

1) Obey the golden rule

2) Don't credit him when things go right.

3) Don't blame him when things go wrong.

He got all he wanted out of life

Michael says he has got everything he wanted out of this life. He got to be with me, retire with me, and die before I did. He says he is a happy man.

He listens to the song "Your still you" by Josh Groban a lot now. Through tears he tells me "this song is how i feel about you". He has asked me to play it for our friends at his wake so they will know how much he loved me. I agree, through tears of my own.

Sunday 12/30/01 another day of sleeping

Michael's left side is totally paralyzed now. He is confused easily. He did not even want to get out of bed this morning. This is new. I woke him to put pills in him at 6 A.M., he wanted to go back to sleep. I laid down by him and we went back to sleep. At 8 A.M. I got up made him some bacon and eggs to eat. He could not manage, so I helped him. At noon he still has not used the bathroom. More importantly, he has not asked for a cigarette. I think his body is shutting down. I did finally get him out of our bed and out to the day bed at noon. He fell into a very deep sleep. 

Taper too fast

Doctor Kim wants Michael off the Decadron. I fear though her intentions are good, the Decadron taper was too fast. It is Sunday and I do not want to disturb her weekend so I have revised the taper myself. I am not going to let him suffer withdrawals, that is just cruel.

The "talk" with Paul

Michael woke for a moment this afternoon and wanted to talk to Paul. He told Paul time is growing near. Michael told Paul to trust the decisions I make on his behalf, he assured Paul I know what he wants. Michael told Paul that he is tired of fighting, and is going to die soon, and he wants us to be ok with that. Paul told him he loved him and it will all be ok. Michael was content and went back to sleep.

Dad and Gramps come to visit

4 P.M. I was just faced with a dilemma. Michael woke up he told me his father and grandfather came to him in his dreams they told him they are waiting. He asked me when I think he will get to go. I hugged him and told him soon baby it will all be done soon, and you can go hang out with your dad and gramps. felt weird like I was talking to him at a boring play, telling him we would be going home soon, but this is so much more permanent.

What does it feel like?

Paul and Micahel had a touching conversation this evening. Michael was awake and sitting up for a dinner of creamed spinach from Boston Market. Paul wanted to know what his paralyzed "bad" side feels like, so he asked. Michael was happy to share what he is feeling with his son. He had Paul lifted his bad arm and see how different it feels. It was nice to see them be able to experience this together. They are close it warms my heart.


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