October 2001 -- Radiation

 

October 1, 2001 ~~ Radiation begins

Michael started his Radiation therapy Monday. The next six weeks will have him at the radiologist every morning Monday thru Friday at 8:15 a.m. for treatment. My Mother has offered to give him a ride to treatment, wait for him, and give him a ride back home everyday. I am so pleased, that was very nice, and beyond helpful. Michael will also have blood drawn every week at Natividad Medical center. The doctors have ordered a platelets count and a complete blood count, to make sure he is holding up o.k.. The lab at Natividad Medical center is very efficient, he is in and out in no time, even if he is starting to look like a pin cushion.

 

Solace on the net

In my sadness and desperation I have been searching the Internet for answers. There is lots of information, but few answers. One place I did find that is bringing me great solace is http://www.braintrust.org/services/support/braintmr/index.html

I joined an email support group on this site for care givers of brain tumor patients. The people in this group are all walking the same road I seem tohave found myself on, and are a wealth of information and comfort to me.

I have also found a site that tells a lot about Glioblastoma multiphase or GBM as these tumors have come to be known. This site has a lot of information 

http://www.cancerconsultants.com/RxOverview/Brain&CNSOverview/BrainGlioblastoma

 

October 10, 2001 ~~ Radiation has it's side effects

We have added 4 mg Dexamethasone three times a day to Michael medications. I have noticed changes in Michael that could mean his brain has some swelling from the radiation. The things I noticed were: Increased hand tremors, Voice tone change, Increase slurring of words, Increase difficulty with word finding, Increase in agitation, Trouble with judging space, Restlessness, Difficulty falling and staying asleep, Complaining of head pain. We let Dr. Kim know and she said adding the medication was a good call.

 

~~ "IT" ~~

by sandy Hall 10/10/2001

It cast it's shadow on the M.R.I.,

it cast it's shadow on our lives.

In a blink life has changed,

upside down rearranged.

You stand there staring in a daze,

test, and doctors it's all a haze.

Fear crawls in to tear you down,

the world is looking don't you frown.

Time is short enjoy it now,

but they cannot tell you how.

God has a plan so they say,

you can only trust and pray.

Bite my ass the anger screams,

this has to be just a bad dream.

 

October 14, 2001 ~~ Michael turns 51

Quiet day,  We have a small family celebration. 

 

October 15, 2001 ~~I get sick... unacceptable

I caught a cold. It is a bad one and I am miserable. it lasted two weeks, runny nose, sore throat, chills, fever, aches, and a cough. This is unacceptable I cannot be getting sick now. 

 

October 17, 2001 ~~ Heavier Radiation

This week the stronger radiation treatments begin. The last two and a half weeks were the primers for the "big guns". To increase the dose they have changed the appointment time to noon. This is so they can put him on the other radiation machine. My mother is still going to be taking him every day. 

We say nuke um doc.

 

October 20, 2001 ~~ the crew cut

The heavier radiation is doing a job on Michael's hair. It is falling out in huge clumps, so today we went to True Cuts and he got his first crew cut since boot camp. In spite of the reason for it it does look good on him.

 

October 21, 2001 ~~Tears for pasta

Most days I hold up very well... I think many days I just run on auto pilot. This particular day the point was driven home over some pasta. I have been asking Michael what he wants for dinner lately and making whatever he request. This day he asked for manicotti like I used to make for him. No problem I say and bounce out the door to get ingredients. I get home and start the sauce for the pasta as it will need to simmer a few hours. I get out the pasta machine and the dye. I mix the dough and start the machine the first dye explodes... ok I can handle this I get out another dye just a bit bigger. the pasta starts to come out I cut off a length. I toss the noodle into the pot of boiling water to cook, it falls apart! I do another, same thing... I take the dough out of the machine, and start over. The noodles continue to fall apart, then the motor on the machine bogs down... NOOOOO I cry out. Michael comes into the kitchen hearing my distress. I cry out, the pasta is messing up! I am in tears. He tells me it's ok he will go over to the store and get noodles. again I cry out no, adding I should be able to do this for you! At this point I have dissolved into a puddle of tears on the floor sobbing like a small child. He picks me up, comforts me tells me it is only pasta and it will be ok. He goes and gets the noodles, I finish the manicotti using store bought noodles, it was still good, but there were still tears for the pasta that could have been.

 

October 26, 2001 ~~ Good news

It was that time again, time to go renew the MIA. I got there right as the doors opened this morning. Signed in, filled out the clip board, and waited. I am beginning to feel like a pro. Everyone in the office is familiar now. Most know about our circumstance and all are kind. I get in to see a worker very quickly we breeze through the paper work, and to my joy finish with some good news. We have no share of cost this month, and because of that the MIA card is good until January 31, 2001! Whew, one less thing to do through the holidays. The workers wish me happy holidays and I am on my way, card in hand. 

Before heading home I stop at the pharmacy that is in the Natividad Medical center and get Michael prescription filled. This pharmacy is huge and busy but I am in and out in no time, pills in hand.

When I get home I call the worker at Medi Cal to see if he received the paper work I sent back to him regarding our case. He has it in front of him. I hadalso sent along the pathology report, hoping it would be of some help. It was! He told me he had not realized it was GBM and he would put a rush status on the case. We talked about GBM some, as he was familiar with the condition. He then asked how we were doing. He was actually concerned with our welfare, this man whom has never even met us. You know I am beginning to think state workers do not get enough credit, their kindness and compassion astound me.

October 26, 2001 ~~ Sleep at last

Michael has been having trouble sleeping, possibly due to the steroids he takes for the brain swelling. Dr. Kim met with him after radiation today, when he told her, she gave him a prescription to help him sleep. He will now be taking a drug called Ambien, just a little pill to be taken before bed, lets hope it helps, I need the sleep.

This has been a good day. We celebrate by going out to dinner at IHOP :~)

 

His mother

My biggest frustration is Doris, Michael's 71 year old self centered spoiled mother. Michael has always been his mothers messenger, nurse, laundress, accountant, banker for as long as I can remember. Whenever she needed anything he was called upon to deliver. Not because she was incapable, but because she likes other people to "take care" of her, and above all likes to keep Micahel in his place as mama's boy.

She has income from a pension and social security. She however steadfastly refuses to get a checking account to pay her bills. Instead, Michael would be sent to the bank on the first of each month to retrieve cash for her. Throughout the month he would be summoned back, given a bill and cash to cover it, we would then be expected to write a check from our account and mail the bill for her. This scenario would be repeated weekly sometimes two or three times. Within weeks after we were to pay the bill she would question weather or not we had actually paid her bill, insinuating we had absconded with the cash leaving her bills unpaid. This went on month after month. 

Every few weeks Michael was called upon to pick up her laundry, wash it, and deliver it back to her. The weeks she did not have enough clothing to make three full loads she would throw in her rugs to be washed. 

Each week he was expected to make multiple trips running her errands, picking up prescriptions, TV guides, bread, money, wash. She would not allow him to do things all in one day, but would spread out the errands so that he was playing fetch and carry for here daily. When he was a well man this was annoying but ok. 

When I called her to tell her Michael had a seizure and he was in the hospital she was concerned. I would soon learn it was not concern for Micahel, but concern about how long before he could do things for her again.

When we told her she would be expected to do her own banking and purchase money orders for her bills, because if we continued to run her money through our account it would hurt Michael's chance for state aid, and possibly end his treatment. She protested, fawned confusion, claimed to be too shaky to write, but we held strong. She gave her cash to a hairdresser and had the hairdresser write checks for her, we still held tough.

When Michael told her he is not allowed to drive, and is too weak to do her errands, he let her know my mother Judy would help her, she was not pleased. After a week she claimed to have not been given Judy's phone number. I had Judy call her. When she finally figured out she had no choice, she accepted rides and assistance from Judy. 

Doris is very unhappy with the current situation. so now she is verbally striking out at Micahel. She told Judy she "knows many people with cancer, and it never holds them back, she does not understand why Micahel such a baby." Her latest... She tells Judy that she isn't calling our house any more because "Michael is mean to her." I played the answering machine tape to show Judy how someone who sounds just like Doris is still calling for Michael to buy money orders for her, funny I guess it isn't her after all. Good thing I did not pick up the phone.

In spite of Michael's illness and Doris knowing the demands now placed upon me, she still calls for us to come pick up and wash her laundry. Not a thank you, or I would appreciate it, just I need my wash done. 

Thank goodness for Judy. She has taken Doris to the bank, to the post office, the grocery store, the doctor, the pharmacy and around. She took Doris out on these errands, made sure she asked her if she needed to do anything or get anything else. No no was the reply from Doris. Now here it is a day later and she is calling Micahel with more that needs to be done. I just leave the answering machine on, and don't answer the phone. Doris will try to push the envelope with Judy, but Judy will not let her get away with her manipulation. Judy is in the process of setting everything up for Doris so that she will have no choice but to be self sufficient. 

The frustrating part of this chapter is Michael feels the need to defend Doris and her actions. He has in the last week or so got better about making excuses forher, I think he is beginning to see. In any case it is up to me to look out for his interests and not let her manipulate him into doing things that are too hard for him. There are people who will help her, her son is sick... she needs to grow up.

 

October 29, 2001 ~~ The thank you

Do you remember to say thank you? We teach our children to, but do we say thank you. Today I said thank you. This morning I went into the Financial counseling unit at Natividad Medical center, carrying two bright orange and white bags, full of candies. I went into the office I am now so familar with, and handed the bags to a worker. I let her know the candy was for everyone in the office, from everyone who loves Michael. It was our way of saying thank you, for without their help Michael would most certainly be dead by now. She seemed surprised at our thank you... With all these people do, all they put up with, the sorrow and pain they see, I hope they know how important they are to those they encounter. I hugged her, thanked her again, and left.

 

New Helper needed

Our life is getting so hechtic. I neesd another assistant, one who can get here earlier in the day. I love Jill she has been wonderful, but she is just not able to work as many hours as I need right now. After much interviewing I have found a wonderful girl, Anaise. She can be here everyday at 3. This will take a lot of stress of of my shoulders.

 

 

October 30,2001 ~~ A good human is hard to train

I wondered what it was inside Willie that made him save Michael's life. What drove him? Tonight I figured it out.

 He has Michael trained...

Who in their right doggie mind would give this up? 

 

 

Wisdom from the TV show ER

There are a lot of diseases that can take your life.

This one can take over your life.

Don't let it...

 

 

Hallowween 2001

Sad Halloween. The day with our day care children was fun. We all dressed up, they ate cup cakes, doughnuts, cookies and punch, trick or treated our house and laughed their little heads off. But when evening came, we only got 7 trick or treaters... usually we get 60 or more. I missed those little face smiling up at me with visions of candy dancing in their eyes. I hope by next year people will be able to pull itself out of the fear, and enjoy life again.

 

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