September 2001 -- Surgery

 

We are cared for

It is impossible for me to take Michael up to San Francisco every trip. Or even do everything all by myself. As much as our kind young helpers with their good hearts would love to be here all the time for us, it is just not possible. In addition to dealing with our new medical crisis, I still have to run our family day care. This is now our only source of income, as well as staying open so 28 or so parents can go to work, and earn their livings as well. This is when you find out who your friends are. Our neighbors have all pulled together for us offering any assistance we need. Mr. Novak a retirie next door even offered on more than one occasion to provide Michael with rides to U.C.S.F.. Our other neighbors Mark, Michelle, Mrs. Brown, Doctor Rosett and Mrs. Tinely have been there to listen, and let us know they are there for us with whatever we need. The children and their parents in our family day care have always felt just like that, family. Their love an devotion is covering us now like a warm blanket now WE are cared for, their love makes us strong. Our friends have all made sure we know that "anything" we need, all we have to do is ask, and when we have asked, they are there in true blue friend style. My Mother Judy has become a taxi service for Michaels needs in Salinas. Every day, sometimes many trips. And I must not forget my wonderful Internet friends, They have all been a great source of support and kindness. We are truely blessed to be surrounded by such caring people. 

 

September 5, 2001~~ Stealth Brain mapping at U.C.S.F.

Suad the Mother of one of the children in our care, volunteered to take Michael to his stealth brain mapping procedure. Her kindness overwhelms us. Michael was excited and pleased to accept the ride from Suad. On the long ride up Michael and Suad had time to visit. He was very happy for the opportunity finding her and her life to be fascinating. It was also nice because she talked to him about something other than doctors, needle, procedures, and it gave him a break from his reality. Suad even went into the hospital with Michael and waited outside the door while they mapped his brain. I know it was comforting for him to have her there. after they knew their way around his brain, Suad and Michael went across the street for something to eat. Then back to the highway they were on their way home. At four o clock they arrived, tired from the long day and better friends for the experience.

 

September 6, 2001~~Surgery

Our Friend John came over at 4 a.m. this morning to give Michael a ride to U.C.S.F. so that he can have his surgery. It takes a good friend to be up that early. 

Michael was in surgery at 9 a.m. . Doctor Michael W. McDermott, MD, FRCSC was able to excise the primary tumor (1.5 cm) from Michael's front right lobe. Doctor McDermott called me when they got out of surgery and told me how well it went. The surgeon sounded optimistic, this is good. He was very pleased with the fact that it only took an hour and a half to get in and out He sounded so pleased with himself I had to laugh. I told him his mother must be so proud of him. He chuckled and said he hoped so. I was very relieved to have this brilliant man take time to call me and let me know my husband was doing well. His kindness comforts me.

Michael did not get out of recovery till 8 p.m. . His nurse let me talk to him via the phone while he was still in recovery, and he sounded great. They were taking good care of him.

He was put into a room at 8 p.m. . When he got to his room I had flowers waiting for him. If I could not be there I wanted him to know I was at least thinking of him. I did not talk to Michael again till the next morning. He was very irritated when we spoke, he had a catheter and it bothered him a lot. he wanted it out and no one was getting to him, at least not as fast as he would like. I told him to be patient.

 

 

September 7, 2001~~home again home again

Paul is still home. He gets up to help me with the children, and his friend Isaac comes over to assist him while I make the trek to the city. We are lucky, I know I have said that before, but These young people are giving so much of themselves, it warms my heart. 

I got in the car and headed up to U.C.S.F. to spend the day and possibly bring Michael home. The oncologist came into see Michael before I got there. Michael said he was not as optimistic as the surgeon, so we have to figure life falls somewhere in the middle. When I got to the hospital, Michael was ready to go home... still in his hospital gown, seventeen staples in his head, he immediately told me to go find someone to spring him. I had to laugh but ventured into the hall and who should be the first person I meet, but Gina Goforth RN, I told her Michael says he is ready to go home. She went in with me to see if she thought he was truly ready to leave.

I had brought up a couple of boxes of candy for the nurses who took such good care of Michael, we gave one to Gina, only to find out that today is her birthday. I am very glad I got that candy now. 

Gina agreed that if Michael wanted to go home he could go. He had me dig his clothes out of the closet, and was up getting his clothes on in no time. He was ready. It was quite amazing to me. He had only been in the hospital overnight after having brain surgery, and now was dressing to go home. The pharmacist came in and went over the medication list with us, explaining everything in detail. The RN came in and gave us post op instructions. Michael was released from the hospital at 2 p.m. .

He was dozed off and on during the two and a half hour ride home. He is very woozy and swollen. when we arrived home I put him right to bed.

staples... Well this takes care of Michael's Halloween costume. Now we just have to teach him to walk like Frankenstien.

 

 





September 11, 2001 ~~ The nation morns

They flew planes into the world trade centers this morning. It is a sad day for the world. I am becoming numb.

 

September 18, 2001~~the bad news

Jill and Paul watch the children for me today so I can take Michael to U.C.S.F. to get the pathology results. The Oncologist we will see is Michael D. Prados, M.D.. Dr. Prados is a very kind doctor , but it becomes evident quickly that he does not like giving people bad news. 

Michael has a cancer called Glioblastoma Multiforme, also known as GBM. This is the most aggressive fastest growing of malignant brain tumors. Michael's tumor is a class IV which is the worst class. With treatment the average life span is 12 months. 

Dr. Prados told us about the treatment course we can follow. He even told us of an experimental treatment that the hospital is running. After the meeting with the doctor we met with Margaretta Page, RN, BSN, who went over everything with us again. She was calm kind and helpful. She set us up with doctors in our home town that can take us through the radiation and chemotherapy, and that will accept our state funded insurance. She gave us her phone numbers and schedule and told us if we have any questions, to please not hesitate to call. Cared for again.

After the news we went across the street to the hospital and found Gina, she pulled the staples out of Michael head for him. He looks almost normal again. Thank God for nurses like Margaretta and Gina...

 

Shrimp~~~

Michael has only eaten shrimp when we went to Scott & Renee's house for dinner. He is not a big fish fan. Maybe it is the brain tumor, who knows but for some reason he is now craving fried shrimp. When I say craving I mean to the tune of 14 pounds of fried shrimp a week. This is so funny to me, so ask Michael what he wants to eat and the answer is simple, SHRIMP.

 

 

 

Our Doctors at U.C.S.F.

 Michael W McDermott MD

Associate Professor of Neurological Surgery Neurosurgical Director, UCSF Gamma-Knife Radiosurgery Program Principal Investigator, BTRC Dr McDermott's clinical specialty interests include adult brain tumors, meningiomas, radiosurgery and image-directed surgery including endoscopy. His research includes work on malignant meningiomas, toxicity studies related to radiosurgery, enhancement of oxygen delivery to tumors to increase the effectiveness of therapy, correlations of tumor pathology with genetic markers, and participation in UCSF's clinical gene therapy trials.

 

 

Michael D Prados MD

Professor of Neurological Surgery Director, Clinical Neuro-Oncology Program Principal Investigator, Brain Tumor Research Center (BTRC) Project Leader, North American Brain Tumor Consortium Principal Investigator, Pediatric Brain Tumor Consortium Dr Prados performs clinical trials and studies of quality of life for patients undergoing brain tumor therapies. The National Cancer Institute's North American Brain Tumor Consortium, which sponsors trials of treatment regimens for brain tumors, is based at UCSF under the leadership of Dr Prados, and he is principal investigator of the Pediatric Brain Tumor Consortium site at UCSF, which is one of nine institutions in the United States selected to participate in this NIH-funded cooperative effort to develop effective new strategies for treating children with malignant brain tumors.

 

Day care

Family Day care has been my job my life for 19 years now. I have always felt close to the families in our care and tried to make sure they knew we are always here for them. We have helped more than one family through a rocky time. I have always been the care giver, it is in my nature. With the terminal diagnosis, Michael and I had to think, did we want to share this with our day care families. Would they be strong enough to make it through with us? We had to take the risk or be hypocrites. I told everyone in a letter what the doctors have said, to avoid undue emotion that could make people feel guilty for whatever decision they needed to make. I took a deep breathe and waited. The families in our care showed their true grit, they hugged us, they offered their support, and they stayed. I always knew family day care is about families and bonds of love, and these people, my family showed us I was right.

 

Working for the experiment

For a time we considered doing the experimental treatment that was offered at U.C.S.F.. We talked to Margaretta Page every day, sometimes many times in a day. She was so patient and helpful, very interested in helping do everything she could to make this happen for us it it was what we wanted to do. Our insurance would not cover the two drugs involved (Temedor & Accutane). Margaretta did everything she could, went beyond what we could have hoped for in trying to attain the drugs for us. 

Then after much reading and hard thought, we decided not to go with the experiment. Yes it may have increased Michae'sl time on this earth, but at what cost. When we looked at the side effects the drugs would cause we decided that the pain would not be worth the time it would give us, we opted for quality not quantity of life.

We called Margaretta and let her know that we could not go through with the study. We apologized for wasting her time. She was so sweet, she told us no problem, she understood. She let us know she is still there for us experimental treatment or no. Thank you Marrgaetta.

 

A thin widow

I asked Michael what he wants most. He tells me the only thing he wants is to have me at my weight goal. As he put it "I want a thin widow". No pressure there... Now I have to get on the stick with my program, stop eating my pain, and give Michael what he wants, easier said than done. 

 

The end is predicted

One good thing, the doctor says his quality of life will not change until the end is imminent. In the last weeks he will sleep more, get weaker, go into a coma and pass on. . Now is the time to keep our chins up. For as Michael always tells me, "it ain't over till its over." This too is going to be o.k....

 

September 22, 2001 ~~ family pictures

We had no pictures of us as a family. This was a wake up call. We went down today and got some taken.

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Guilt and other unreasonable thoughts

I entered the world of why me? Why him? What did we do to deserve such a fate? How could God "do this to us"? Is this punishment? Did I not appreciate Michael enough, so that God could want to take him from me in such a cruel fashion? The depression descends on me like a black cloud. People offer to pray to us, and all I want to do scream "God made his decision, don't bother!"

This was a cloud I needed to burst. It was very unproductive in it's very essence. I have to remember my own words, Chin UP, or you'll get dirt in your mouth. and I have to remember Don't suffer from catastrophes that have not happened yet. It has helped each morning that I have to get up and think of something positive and inspiring to send to the friends on my morning message list. They may not have known it, but they helped get my chin out of the dirt.

 

 

 

 September 24, 2001~~Doctor Charlotte Kim

 Charlotte Y. Kim, M.D.

After receiving her medical degree from Stanford, Dr. Kim completed her internship at UCSF Mount Zion Medical Center in San Francisco. She did her residency at Stanford University Medical Center, where she was awarded the Roentgen Research Fellow Research Award. She was also awarded the ASTRO Research Fellowship, with which she pursued extensive research into hypoxia induced pathogenesis of cervical cancer and the role of oxygen in radiosensitivity and chemosensitivity in head and neck cancers. At Yale-New Haven Hospital, she was a clinical instructor and research fellow. Dr. Kim is board certified in radiation oncology and is affiliated with the Salinas Radiation Oncology Center in Salinas.

Dr. Kim is the Radiologist who will be in charge of Michael's radiation here in town. At 10:30 this morning we met with Doctor Charlotte Kim M.D., as Paul cared for our day care children. She explained everything that will be happening over the next few weeks. Everything we could expect from radiation therapy. She took time to answer our questions, Michael felt comfortable with her right away, he says he thinks he can trust her, she shoots straight. I am very glad for that.

 

September 25, 2001~~Doctor Shehzad Aziz

Another day, another doctor... Doctor Shehzad Aziz M.D. is the Oncologist here in town that will be caring for Michael. Michael had to go to this appointment alone, at least until my helper arrived and I could go join him. Michael had a hard time, he did not know the answers to many of the doctors questions. I had given him the treatment binder that has everything we have done and are doing in it, it was some help, not much. When I got to the office I was able to paint a better picture for the doctor, and answer all his questions. This was just a get acquainted visit. Dr. Aziz is a very nice doctor with a calm and assuring bedside manner. The office staff here are brilliant. They know their business and how to work around all the obstacles. Best yet they care about their patients, and it shows. We are lucky to have them.

 

September 26, 2001~~the face mask

The radiation Michael will receive is a direct beam aimed right at the tumor and tumor site. So today he went in and they did a cat scan to create a radiation mask just for him. He will wear it every day for radiation. it has marks on it so the technician will know where to aim the beam. It bolts to the table so his head will stay perfectly still. Looks scary to me, but he says it is not that bad. 

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September 27, 2001~~ Temedor

The state funded insurance denied the chemotherapy drug that the doctor ordered, "it is too expensive". The drug is a thousand dollars a day so there is no way we can afford to pay for it out of pocket. I called Scherings the company who makes the drug to see what other courses were available. They have informed me they have a Commitment to care program and if we qualify, they can help us with the cost. I faxed them our tax returns and low and behold we qualify . This company will Fed Ex the drugs to us, and provide them free of charge! Can you believe that. I was ecstatic, I never heard of a drug company that did that. This company has a heart.

 

  

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