History

Journal History

Friday, July 23, 2004 7:06 AM CDT

Dear family and friends,
Please excuse my lack of communication...I have been computerless since my last entry. Fortunately (for me), my dad got a new computer and gave us his old one. We've been in the process of getting it set up...or to be more accurate Megan and Briana's boyfriend, Mike,have been getting it up and running. There's still a few things to do yet but, so far so good.
Monica has set up a caringbridge site for Dave now, so please check it out for the lastest info on his progress and to send him encouragement. You have no idea how much receiving even a short note can boost one's spirits. It means so much to hear that there are friends out there pulling and praying for you...it is the boost needed to keep up the fighting spirit. It's easy and just takes a minute. After you access the site and read the latest journal entry you can click guestbook and follow the directions. You can also read past journal entries to get the full story. Please visit Dave's site at:
www.caringbridge.org/wi/dave
Thank you all for your prayers and concern.
Love, M.C.

Saturday, May 29, 2004 5:01 PM CDT

Dear family and friends,
I'm not sure if anyone still checks this site but for those who might...our family is once again in need of some serious prayer support. It seems that cancer has once again reared it's ugly head.
My nephew, David, 28 yrs. old, Monica's son, was just diagnosed this past week with stage IV colon cancer which has metastasized to his liver. He had surgery yesterday, May 28, to remove the colon tumor, biopsy the liver tumor and some lymph nodes. It seems the opinion of the surgeon is that the liver tumor is inoperable due to it's large size and vast blood vessel involvement. He is scheduled to be released from the hospital later this week. He will then be referred to a higher facility for evaluation, possibly a hospital affiliated with the Univ. of Wisconsin.
Unless Monica sets up a website, I will post further updates on this site.
Again, I ask you all for your prayer support...we are looking for a miracle.
Thank you...love, M.C.

Saturday, November 8, 2003 8:41 AM CST

Dear family and friends,

The holidays are fast approaching and again I'm not looking forward to them. The anticipation and joy just isn't the same anymore. Instead I recall past holidays...Bob loved Thanksgiving. His favorite meal of the year! He was always a big help getting that big meal ready. I'd hear a million times, "how's the bird hon?" Of course he was the official carver. The football games were always on, but thank God, Bob was not a football fanatic. He always helped with the clean-up as well. He also would tell me about a million times how wonderful the meal was and what a great cook I was...which was quite a compliment since his mom was the best cook ever! The last words he spoke every Thanksgiving before we drifted off to sleep were "great meal hon!"
Then quickly we moved into Christmas mode. Bob and I almost always did an all day shopping excursion, usually a few days before Christmas, followed by stopping somewhere for hot chocolate. Bob hated shopping, but once we got going, he was like a little kid. I'd be like a whirling dervish with my list and Bob would always disappear...I'd go looking for him and find him totally engrossed, playing with some toy. I remember the many Christmas Eves bob spent (expletives deleted), putting together things that invariably had a piece missing. I remember the kids dragging us up before dawn, just moments after we'd gone to bed. Bob's joy at seeing the kids open their gifts was greater than theirs.
I have these and many more precious memories and I thank God for them. I had so looked forward to making more as we moved on through our lives. The kids are growing fast...no longer do they want cute little toys, just cash. There's still the grandkids though. Unfortunately, they won't have the greatest "Santa" in the world to celebrate with them.
I wish you all a joyful, peaceful holiday season.
May God bless you all with precious memories.

Love, M.C.

Sunday, July 20, 2003 8:31 AM CDT

Dear Family and Friends,

Well we're finally back from paradise...and somewhat reluctantly. Costa Rica is the ultimate escape from the real world! Many family members joined us on this trip to mark the 1yr. anniversary of our beloved Bob's death. I'm sure if I'd have been at home, I'd have spent the day in my room, sobbing. Instead, we were in the Third World Bar toasting Bob. I took a framed photo, that I had taken of him on our last trip, and it now is on the shelf behind the bar. Any friends or family visiting in the future must stop in and have a drink for Bob.
Everyone seemed to have a great time and I think most will want to return. Briana swears she's going to move there when she turns 18! (lots of surfer dudes there). Not speaking Spanish is no longer a problem there. In fact, the girls and I spent the last week or so there alone and we managed quite well. I would love to have a place, condo or home, there. I couldn't live there permanently, as I'd miss everyone too much, but I'd love to spend a few months every year there. Anyone interested in investing in a vacation spot, let me know...then you'd have no excuse not to visit this paradise!

Reflections on the year past:

To say that it has been difficult, would be a great underestatement. Some days, I don't know where the time has gone...I can't believe it's been a year already. At other times, it seems like a lifetime since I last looked into my love's eyes, laughed at his jokes, waited for his call. I know that I was very blessed to have known and loved Bob for so many years. However, his death has left a void in my life that will never diminish. He will forever be a part of me.
It has been a year of many firsts for me...being a single parent, managing bills, home repairs...the list goes on and on. Some I've managed decently, others, I'm learning (mostly, the hard way!).
I know one thing for sure...I never would have made it this far without the support and love of my wonderful family and dear friends. I could never in a million years thank you for all you've done. There are no words to adequately express my love and gratitude to you all. God Bless you!

All my love,
M.C.

Friday, July 4, 2003 8:53 PM CDT

Dear Family (those of you that aren't here) and friends...

We are in Tamarindo, Costa Rica. We went to the Third World Bar for dinner tonight...watched the sunset and toasted Bob. We left a photo of Captain Bob standing in front of the Third World Bar sign on the beach...they said they'd hang it up in the bar, so look for it when you come down here.
What a bittersweet day this has been. Bob loved it here...we were supposed to return together. I'm sure he's here with us in spirit. There have been a few odd things happen while we've been here...a double rainbow on Briana's birthday, the horse I was riding today on the beach was determined to head into the Third World Bar...he kept pulling away from my direction (this is the honest to God truth!) So I know he can't be far.
There were 13 family members that started out on this trip...Marcia, Tom, Karen, Kathy, Dan, Joey, Michael, Megan, Monica, Megan, Briana, Kayla and of course myself. Some have returned to reality, some of us remain for a bit more of paradise. The escape has been wonderful!!!
Some days, I can't believe a year has passed so quickly and yet it seems like forever ago.
I miss you so very much my love.
Loving you forever, Tish

Monday, March 24, 2003 6:35 PM CST

Dear family and friends,

Contrary to what I said, I have not closed this site. Initially, it was just too difficult for me to close this chapter of my life. Later, I continued to meet others traveling on this same journey and hoped perhaps it could offer some information or more importantly some comfort.
Megan and I just returnd from a weekend at Duke for the Brain Tumor Center's Angels Among Us Walk/Run. (I'm sure you can guess which I did!) This was their annual fundraiser for tumor research/cure. Unlike the breast cancer walks I've attended, there was NO large group of survivors. It was however heartening to see the many family and friends of those victims of this horrible disease...sadly, most were walking/running "in memory of...". There were large teams of family and friends, identified by matching t-shirts. Then there was the Megan/Mary Clare team. If anyone would like to join us next year...we'd welcome one and all. It's very beautiful in N.Carolina. The weather was gorgeous! Flowers in bloom and fragrant! What a change! There are many things to do there (like golf) and a beautiful new mall. There are also great places to eat. We stayed at a beautiful hotel...The Millennium, which Bob and I had stayed at once before, thanks to our friends at State Auto.
I discovered some pretty staggering information this weekend...this year more than 186,000 people in the U.S. will be diagnosed with a brain tumor. Brain tumors are the second leading cause of cancer death in children under the age of 20. They are the third leading cause of cancer death in young adults ages 20-39. (I did not see any figures on the 40-60 yr. range...but I know or have met several since our experience.) Incidences of brain tumors are increasing and the reason for the increase are unknown. There are more than 120 different types of brain tumors, making effective treatment very complicated.
When Bob was diagnosed we were told that less than 1% of funding went to brain tumor research. The funds are allocated to the cancers that affect the most people or that attract the most attention...Aids and breast cancer at the top of the list. By the time the $ filters down there's not much left. I intend to do my part, however small, to help this situation.
If anyone out there is looking for a cause to support...please join us.
O.K. I'll get off my soapbox now...
Friday morning before we left for the airport, Megan was awakened with terrible pain on her right side. She assured me she'd be fine...she did not want to dissappoint me. She was not "fine"! When we arrived at our hotel we dropped our luggage and headed for the ER. (What would a trip to Duke be without a trip to the ER?!..not one of the "things to do in N. Carolina" that I mentioned earlier). That was at 3pm. I'll spare you all the details...the myriad tests and the multiple diagnoses. To make a vey long (18hrs) story short, she was finally released at 9am saturday. The final, tentative, diagnosis was a softball-size cyst on her right ovary. She was to follow up with her Dr. when she returned home. She is feeling better however, and has an appointment on wed. I will update you all later.
Please keep the many friends I have met, who are battling this horrible disease and the people that are caring for them, in your prayers.
I also would ask that you keep my niece, Nicole, in your prayers who is in the army and in Iran right now, as well as all of the brave young men and women who are risking their lives for us.
God Bless America!

Love, Mary Clare

Thursday, July 18, 2002 at 06:02 PM (CDT)

Dearest Family and Friends,

Two weeks ago today was, by far, the darkest moment of my life...the day that I lost my best friend and soulmate. My life has changed forever and I'm sure my heart will never heal until we are together again someday.
I first met Bob in January of 1968, shortly after my 17th birthday...and "the rest is history", as they say. I knew from the moment I met Bob that he was the man that I wanted to be with for the rest of my life. I told my parents "tonite I met the man I'm going to marry"...of course I hadn't told Bob that yet.
In that first meeting, I could sense what a caring, sensitive, moral, honest man he was. He fulfilled all my greatest expectations and then some.
Our life was not always easy. In fact we struggled through many rough years...but there was always love.
After our 2nd child, Megan, was born, Bob decided to go to law school. He knew that the seasonal work of the asphalt business might be a little difficult financially to support a growing family. It was a very difficult time for all of us. For 5 years Bob awoke at 4am, studied until 5am, went to his construction job, and many nights straight to school. He would arrive home many nights at 11pm, exhausted, only to start all over again the next morning.
Sometimes, days would go by without Laura and Megan seeing their dad. His determination and strength carried him through and he did become a lawyer. While he loved that occupation, he did miss his paving days. He loved the smell of asphalt, being outdoors and the physical labor itself. (He used to get a great tan too!)
We both bless the day that he was hired by State Auto. I'm not sure that a finer company exists. They truly put family first as was exhibited to us this past year. The company and it's many employees supported us daily. Not one week went by that Bob did not receive a card from someone. His close (State Auto) friends kept vigil with us on many occasions at the hospital. His buddies came by at least once a week to take him to lunch. When Bob could no longer go out for lunch, they brought lunch to him. When Bob could no longer eat lunch, they sat and chatted. I will be forever grateful to you guys.
We have been blessed with many beautiful friends. Prayers, gifts, meals almost daily since June of 2001. I think I've cooked about 3 times in the past year...and I don't miss it a bit!
Family...there just aren't enough words or appropriate words to say for all that I feel. The support and love has always been there and I know it always will be.
To the many friends we've made via e-mail...thank you for your continuous support and prayers.

Bob was a man of great strength, courage and character. He really did fight the good fight and never once did he complain or give up hope...even in his last few days, he kept telling me that he would get better at doing some of the things that he could no longer do.
In one respect, Bob and I were blessed. We were very much aware of the prognosis of this disease. We had the time, (not nearly enough), to love each other more fully, to appreciate the special relationship that we shared. Bob had the time to express his love to his family and friends and most importantly to his children...he was so proud of each and every one of them. He loved and enjoyed his grandchildren...he was a wonderful "papa".
There will forever be a painful void in our lives, but how blessed we were to have had Bob in our lives...today, Heaven is blessed.

My deepest thanks to all...God Bless
Love, Mary Clare

P.S. I will probably be closing this site, painful as that
will be, in a month or so. Please keep in touch...
e-mail: QMB28@aol.com
or write: 7636 York Rd.
Parma, Oh 44130

Saturday, July 06, 2002 at 12:08 PM (CDT)

Robert (Bob) Hurt of Parma � husband, father, son, brother, grandfather and friend to all who knew him - died at home on July 4 at the age of 54 after a yearlong battle with cancer. Mr. Hurt and his wife of 32 years Mary Clare Schellinger had five children: daughters Laura Zannoni, Megan Rego, Briana, and Kayla; and son Ryan. He was an inspiration to everyone who knew him throughout his life.

Bob graduated from Cathedral Latin High School, the University of Notre Dame, and John Marshall Law School. Mr. Hurt, a former Cleveland City attorney, practiced law in Cleveland and was most recently a staff attorney for State Auto. He worked his way through Cleveland Marshall Law School, attending most of his classes at night and working in the construction industry during the day. For nearly 6 years, it was not unusual for him to rise at 5 a.m. to work his day job as a laborer, and then on to law school, finally arriving home at 11 p.m. Although he practiced law for over 20 years, he loved construction work and always had a project. The latest one was assisting in the completion of Circo, the warehouse district restaurant owned by son-in-law Gene Zannoni.

A quiet and unassuming man, Bob Hurt had a taste for adventure, beginning with skydiving during his 20�s. In recent years, he hiked the Grand Canyon with colleagues from State Auto, the last trip taking place only months before his illness surfaced. He had a strong affection for Notre Dame and a keen appreciation of humor. He is most remembered for his love of family and friends. Bob led by example and those who knew him will be touched forever by his life, his courage and his love.

He is also survived by five grandchildren, his father, Fred Hurt; brothers Larry of Woodstock, Georgia and John of Medina; sisters Marcia (Shaker Heights); Mary Hill (Cleveland); Monica (Milwaukee, Wisconsin); and Kathy Gibbs (Simi Valley, California); plus a host of nieces, nephews and extended family.

The family will receive friends Sunday from 2 to 4 and 6 to 9 PM and on Monday from 10 to 12 PM at Craciun�s Funeral Home on Bagley Road in Middleburg Heights. A Funeral Mass for Mr. Hurt will be held at 12 PM Monday at Holy Family Catholic Church on York Road in Parma.

Thursday, July 04, 2002 at 10:45 AM (CDT)

Dear Family & Friends,

It is with a very heavy heart that Mary Clare wants you all to know that Bob passed away peacefully in his sleep early this morning at 2 am. During his final hours Bob was surrounded by his loving family and many of his friends.

Visitation and funeral arrangements are being handled by Craciun Funeral Home, Bagley Road, Middleburg Hts., Ohio. Tentative plans are for visitation to be held Sunday and a funeral Mass at Holy Family Church, York Road, Parma on Monday. After meeting with Bob & Mary Clare's five children today, final arrrangements will be made and an updated note will be posted on Bob's website as well as in Bob's published obituary.

It is very hard to convey to all of you the love and appreciation we, as a family, feel toward all of you. You all are included in our prayers of thanksgiving.

May God's blessings be with all of you.
Love,
Monica

Wednesday, July 03, 2002 at 04:50 AM (CDT)

Good Morning Everyone,

I wish that I had some uplifting news for you all.
Bob's condition seems to be spiraling downward. He can no longer eat or drink, as he cannot swallow. The only medications he is able to receive are Morphine for pain, valium suppositories to prevent seizures, and a small tablet placed under his tongue to help reduce secretions. This last medication does not seem to be very effective however. He had a somewhat quiet night, but this morning since 4:30 he seems to be having some respiritory distress. It is very difficult to watch him cough and struggle. He seems to be quite uncomfortable. In addition he has an infection, probably originating in the urinary tract. He has been running a temp off and on. He is losing ground rapidly due in part to dehydration. It most certainly is not the path I was told this illness would take. I was assured the end would be calm, that he would sleep more and more, become comatose and stop breathing. No one indicated the distress he would be experiencing first. I understand that no one can give me any definites, and I suppose it wouldn't have made a big difference anyhow...how can you prepare to watch or anticipate suffering? To me, it does appear that he is suffering despite the morphine and valium.
Please continue to pray...for a more peaceful and comfortable transition...some cooler weather wouldn't hurt either!
Will update when I can.
Thank you, love, M.C.

Monday, July 01, 2002 at 07:09 AM (CDT)

Good Morning Everyone !

Someway, somehow, this web page got a little screwed up...I have no idea how...everyone claims innocence. You may have had some funky colors or other changes. The print size has changed and I don't know how to correct it. Also at the end of the journal entry, you have to scroll down forever to see the other options. I don't know what is coming up for you when you log on to this site, but hopefully you're at least getting the message.
Anyway, can you all believe it's July already? I'm sure you can if you don't have air conditioning (we don't). Our fans have been going non-stop for a week. These are the days we dream of in January!
Since my last update...
Bob seems to slip a little further away each day. He has had some pretty awful nights. It's so hard to determine the precise nature of his pain as he cannot communicate it to us. We believe that in addition to his headaches, he is also experiencing severe abdominal pain. Without going into all the details...all the medication he is on is very constipating. All our efforts to remedy this have not been very successful to this point. He's getting everything short of TNT. It's a vicious circle...lots of pain meds, which are very constipating and then trying to counter-act that with other drugs to help the problem. These drugs all taste horrible and it is sometimes difficult to get them down. Sometimes, Bob can swallow and sometimes he can't. It's always a challenge. Most of his drugs come in liquid form, so we alternate when the situation warrants. I usually crush his meds and mix them with applesauce, cool whip, ice cream or something, but it really doesn't disguise the taste...just helps them to go down a little easier. Liquids that are too thin, seem to choke him and he ends up having little coughing spells and of course the danger of aspirating into his lungs is a concern.
Sunday, monday, tuesday and wednesday he was pretty "out of it". On tuesday we had our driveway paved...something Bob has wanted to do for 27yrs. We were hoping the smell of the asphalt would bring him around, as that's one of his most favorite scents. He absolutely loved his years in the paving business.
On thursday he was a little more responsive. We actually had a little song fest in the morning. He was much more alert. Jack and Brian stopped by and brought lunch. I was even able to feed him part of a tuna sandwich from Mr. Hero. This however ceased once evening approached. The pain is usually greatest at night. It seems to begin shortly after his 10pm meds. After much medicating with morphine and valium, he settles into a drug induced state and appears calm and comfortable.
There has been very little communication since. The hospice nurse came out on saturday to insert a catheter. It appears that he has an infection of some sort, which I hope will be addressed today when the nurse visits again.
Presently he barely responds. He will sometimes repeat what you say to him, but he cannot respond to questions or follow instructions. This is partly due to all the medication and in a larger sense the progression of this horrible disease.
It is unbearably hard for all of us to watch him slip away more each day. It's especially difficult for the kids...big and small. Kayla is hardly ever here...she spends most of her days and nights with friends.
I have a lot of help and companionship for which I will be eternally grateful. Someone usually stays with me at night as his care generally requires two people. Bob's brother and sisters that live here, are here daily and one or the other usually spends the night with me. Someone from my family tries to get here every other weekend. I could never get through this alone. Nor could I get through this without all the loving support of all of you, our dear friends.
Please continue those prayers...Thank you all so very much. I will be in contact as best as I'm able.
Love and God Bless, M.C.

Monday, June 24, 2002 at 05:04 PM (CDT)

Hi All

Just a short update today...
Bob had a very rough early evening last night. He's been getting a few killer headaches lately. It started about 4:30p.m. It took 80mg. morphine, phenobarb, a valium suppository and 2 Tylenol before he was able to get some relief. All those drugs finally knocked him out about 8pm. He's been having a sleepy day today as a result. He was able to eat a fairly good breakfast though. It seems to be getting harder for him to eat. He has difficulty chewing. He also had difficulty following instructions. Some times he can suck on a straw and other times I have to crush his medicine and mix it with applesauce. It goes down real easy that way. So far I've been able to get it down. It appears that he has difficulty swallowing sometimes. The hospice nurse is going to see about getting some of his medicines in liquid form.
He has not had any headaches so far today.
I'm really hoping we don't go through that again tonight, as watching him suffer is unbearable.
He pretty much stays in bed now...one reason is because it takes more strength than I have to lift him. Unless there is some one really strong here to help lift him, he has to stay in bed. He really doesn't ask to get up unless I suggest it. When he is up in his chair, it's sometimes difficult for him to hold his head up.

Anyway...that's all the news for now. Will write later...Love, M.C.

Friday, June 21, 2002 at 06:31 AM (CDT)

Good Morning Everyone !

I'm happy to report that last night Bob and I had our first long night of sleep in weeks. He went to sleep about 10:30pm, got up once during the night for a very short bathroom break and slept again until 6:00a.m...up briefly and is presently sleeping. His sleep appears to be restful.
We had a very difficult night, tuesday. He began complaining of a headache about 9:00p.m. The pain escalated for the next several hours. I was in phone communication with the Hospice nurse throughout the night. After much dosing with morphine and phenobarb, he was finally able to sleep for a bit. His headache continued off and on through the morning of wed., June 19, the anniversary of this terrible nightmare. By 10:45a.m. he was able to sleep soundly and comfortably. When he awoke about 2:15p.m., he appeared pain-free. Needless to say he had a pretty groggy day/evening. He slept pretty well wed. night. Thursday dawned and he had a very good day. He was feeling good enough to visit with co-workers, Jack and Terry, out on the deck. I heard a lot of laughing and joking going on out there. I tried to get him to nap about 3p.m., but couldn't shut him up. I call him "Chatty Kathy" (those of you who are older, may remember that doll). He was just laughing and talking up a storm. Abruptly at 5:30, his mood changed...he was running a low temp and complained of a slight headache. Tylenol seemed to help. He proceeded to have a very good night as I mentioned earlier.
His present condition seems to have deteriorated somewhat. He is no longer able to help support his own weight, therefore I need assistance with just about everything. His confusion level remains about the same. He has great difficulty at times communicating. He is unable to make connections between his brain and body parts, making it nearly impossible to follow directions. He does have many lucid moments as well. These are great times. This damn disease is such a roller coaster ride. There are days when he's doing so well that I think that miracle is taking place and then he'll slip back and I fear the end is near. It is so emotionally draining. I feel so helpless most of the time. I try to stay focused on the good times, but it's very difficult.
We have family coming in again this weekend...my dad and 2 sisters. I look forward to their visit. It gets very hectic with a house full of people, but the company is great for me. I'm very grateful for all their help...couldn't get by without it. I know I never would have survived this year without the generosity and undying support of so many friends and family members. God bless you all.
I will continue to pass along updates as often as I am able.
Once again, thank you...Love, M.C.

Monday, June 17, 2002 at 08:08 PM (CDT)

Dear Family and Friends,

I would like to extend a belated Happy Father's Day to all of you fathers out there. I hope you all had a peaceful fun-filled day. We had a large gathering of family here for a picnic. Bob's brother, Larry, was here from Georgia. His sister Kathy, her husband, Dan and their son, Joey were here from California. His brother John and family...sister, Marcia and husband, Tom...sister, Mary...niece, Lauren, her husband, Randy and daughter, Layla...Monica and of course all of our children and their families. Our daughter, Megan brought our feathered-grandchild, Noodles (an African Grey). Bob's father also came. We had a full house and lots of food.
Bob had a few really good days. We were able to get him upstairs for a real shower on saturday. Saturday evening we went to the wedding reception of our step-grandson. Bob seemed to enjoy the outing, but it did tire him out. Sunday he felt up to going to Mass. As I said, he had a great couple of days.
Today, hasn't been so great. After an almost sleepless night, he has been having a rough day. His confusion level is high. He has been complaining of a slight headache off and on since last night. Extra strength Tylenol has helped somewhat, but the Dr. has ordered a low dose of Morphine to help with the headaches as well as maybe helping him to sleep...we'll see. If Phenobarb and Morphine don't knock him out, I don't know what will!
The Dr. believes that increased cranial pressure, due in part to tumor growth and swelling, may be the cause of the headaches and thus his inability to sleep. He also increased the Decadron from 20mg/day to 24mg/day. I sure hope this works, as we both are in desperate need of sleep! I also could not bear to see him in pain. He does not seem to be in any pain presently nor has he ever complained of any pain in the past...for that I am most grateful.
I ask that you continue to keep us all in your prayers...thank you.
Love, M.C.

Friday, June 14, 2002 at 02:20 PM (CDT)

Dear Family and Friends

We are back home now after spending the last few days in the Cleveland Clinic. It was suggested on Monday that perhaps a few days spent in the hospital might help to regulate Bob's meds in the hopes of finding a solution to his restlessness, anxiety and sleeplessness. For the past 3 or 4 weeks, Bob has only been able to sleep in 1 or 2 hr. intervals. Even when he is able to sleep, it is not restful. The medications he has tried have not helped, in fact they seem to have had the opposite effect. His inability to sleep, of course, means that I don't sleep. Therefore I agreed to the hospitalization.
The first night there was the worst. They kept him on the present meds so they could observe their effect. They started out with a sleeping pill (Restoril), followed by Thorazine and Ativan. The more they medicated him, the more restless he became. About 4am he became very combative and I could not handle him anymore. I had a little break-down of my own. The nurses took over for about an hr. so I could have a break. To watch his suffering was just more than I could bear, plus I've been suffering from sleep deprivation as well.
He finally fell asleep about 5am.
The next morning, the Dr. decided to cancel the present drugs and try phenobarb. He thought that part of the problem may be that he was having brain seizures, which were causing the restlessness.
They placed a small butterfly needle in his upper chest and gave him the phenobarb by injection through that. The administration was not pleasant as the phenobarb burns terribly for a few minutes. It did however seem to help. He was to receive a dose every 8hrs with additional dosing if necessary. The first day, he need some additional dosing, but he did sleep well that night. The next day, he was much more alert and less anxious. By the 3rd day, he no longer needed those interim doses. He showed much improvement...his balance was better and he was even able to feed himself with his right hand, something he has been unable to do for about 3 wks. I thought, finally, we were on the right track. They switched him from the injections to pills.
We came home yesterday (thursday) afternoon. He had a great day. I gave him his phenobarb at 10pm. He got up at 1:30am to pee and went right back to sleep. He woke up again at 2:30am and was awake off and on the rest of the night. At 4am, he started asking me about his condition. He seemed startled to find out that he still had a brain tumor (2 in fact). He thought that it was gone and that he was getting better. He became quite upset and so I gave him the phenobarb at 5am. He was able to settle down after that and slept until about 9am. Since he has been awake, he is in good spirits and doing well. I hope last night was just a fluke and that he will be able to sleep well tonight...for both our sakes.
Presently, he is sitting in the kitchen visiting with Megan...laughing and joking. He does seem so much more alert lately when he is awake. Perhaps because he is getting more restful sleep.
I will continue to keep you all informed via myself or Monica
Please continue those prayers. Thank you again for all your support and love.
M.C.

Friday, June 07, 2002 at 06:24 AM (CDT)

Dear Family and Friends

I know some of you have been anxious to hear the latest news and I apologize for the delay. As I mentioned in my last entry, I did write an update and then had to delete it. I don't know what I was thinking...my girls check this site frequently therefore I had to delete the message before they read it. I wanted the information to come from me directly and not read it on the site. This is their last week of school. They had various fun activities planned and I did not want to put a damper on it. Today is their last day. We have many family members coming in for the weekend. It will be quite hectic. I opted to speak with them yesterday after school while it was quiet and we had some time to ourselves. That was the hardest thing I've had to do so far. More on that later.
As you know, Bob had an MRI on tuesday, May 28. On thursday, May 30, we had an appointment at the Clinic. Dr. Peereboom (oncologist) informed us that it appears the chemotherapy has had no effect. In fact the new tumor (left occipital) has doubled in size since the Last MRI report of April 8. Bob's condition has continued to deteriorate...his vision has significantly decreased, his right side is virtually non-functional, his frustration and confusion continue. It was Dr.Peereboom's recommendation that we now enlist the services of Hospice. This was not the news we were hoping for.
As you also knew, we were scheduled to go to Duke on the following tuesday, June 4. I placed a call to them on friday. Dr. Reardon returned my call on monday. Unfortunately, he did not have better news for us. He did tell me that they never refuse treatment if a patient insists, however the odds were very minimal...the best we could hope for was to "buy" a little time and he couldn't guarantee that it would be without side effects. He explained that we might want to take "quality of life" into consideration. He was very kind and did offer Duke's support in whatever decision we might make. He told me to speak with Bob and get back to him.
Bob and I discussed the options at length. He said that he is definitely not giving up the hope for a miracle, but given the "very slight" odds, he has opted for "no more drugs".
So now we have Hospice. We also have a home health care aid, who comes for an hour everyday to assist me with his care. They are all very nice, but I really can't appreciate that right now.
The concensus of the Drs. is that Bob has a "few" weeks.
He is off all non-essential drugs. He takes his seizure meds and decadron. Dr. Reardon increased his decadron by quite a bit in the hopes that this may make him a little more awake and lucid. However I think it may be a little too much as he has been having increased periods of high anxiety and agitation for which I have to give him ativan to help calm him...this makes him very sleepy so it kind of makes the decadron counterproductive. The Hospice nurse is coming this morning to go over and maybe re-adjust his meds.
As you can well imagine, it has been a very tough couple of days. Yesterday was the worst of course when I had to explain the situation to Briana and Kayla...the hardest words I've ever had to say. They are doing o.k. this morning.
I hope I haven't rambled too much...please forgive me, my thinking hasn't been all that clear lately. We are all on overload right now.
I may be turning the updating over to Monica soon as it is hard for me to get the time to sit at the computer. She or I will keep you informed as often as possible.
Please keep praying...if a miracle is not to be, then that this transition be painless and peaceful for Bob. I think the kids and I need your prayers more than Bob does at this point.
Again, thank you all for your love and support...Love, M.C.

Saturday, June 01, 2002 at 10:56 PM (CDT)

Hi Everyone,

I know there are many of you that have been anxious to hear the latest news. I did write a new update for friday, but had to delete it for reasons I will explain later.
Perhaps a few of you did get a chance to read it and maybe you can share the update with those you know.
There is, unfortunately very little change in Bob's condition at the present time. It has been very busy and hectic here as you can imagine.
Our present goal is to get our youngest girls through their last week of school.
I am still waiting on a call from Duke. As you know the plan was to go there next week...tuesday.
Now would be the time to pray for that miracle...thank you.
Love, M.C.

Tuesday, May 21, 2002 at 10:33 PM (CDT)

Dear Family and Friends,

We have recently converted our downstairs into the master bedroom. Not an ideal situation, but a functional one for now. It became too difficult to get Bob up and down the stairs as he can no longer walk. We have all kinds of new equipment including what has to be the world's worst wheelchair! For those who have been to our home, you know our downstairs isn't very spacious. Bob is very gracious when I ram him into things. Also a word to the wise...old houses are charming, but not when there's only one bathroom and it happens to be upstairs!
Bob had a good day today. Thank you Brian, Steve and John for bringing lunch and spending time with Bob. He really enjoyed the visit. You guys have all been great! Thank you Terry and Jack for your lunchtime visits as well.
Bob's sister, Kathy, is here visiting from California. She is a nurse and has been quite helpful in assisting me with Bob's care as well as other duties around the house. Monica has been busy giving Martha Stewart a run for her money...landscaping. She's doing a beautiful job. I'm sure my neighbors are delighted to see such beautiful flowers after 27 yrs. of our living here. I just hope nobody lures her away with an offer of real $.
A physical therapist is supposed to call me tomorrow to set up a time to come to the house, hopefully soon. The inactivity is driving Bob crazy.
Just to re-cap...Bob is scheduled to have an MRI on 5/28, CCF apointments on 5/30, and Duke appointments on 6/5 & 6/6. My sister has graciously offered to drive us down. It seems like the best option for now given Bob's inability to walk. It would be almost impossible to lift Bob into the small planes that Airlifeline provides, a wheelchair will not fit down the aisle of a commercial airline and the air-ambulance planes...get this...are all being serviced on those dates...go figure! Anyway, I think driving down will work out best.
That's about all the news for now.
Please keep praying for that miracle...love you all, M.C.

Wednesday, May 15, 2002 at 08:39 PM (CDT)

Dear family and friends

Don't be shocked to receive another update so soon...just trying to keep you all informed on the latest developments.
Bob had his 4th and final chemo treatment, in this cycle, today. He tolerated it quite well however it has been a very difficult day otherwise.
He presently has almost no use of his right side. Getting him around and mobile is next to impossible. Communication has become very difficult. He is unable to follow or understand simple directions. Many times, he is unable to feed himself or brush his teeth. I've been having to shave him...which is a really scary thing for us both I think. I think I may need some outside assistance soon in the form of home health care. We are also considering converting our t.v. room into a bedroom. It has gotten increasingly difficult for me to manage getting him up the stairs. This may be the better alternative since I really don't want to confine him to the upstairs. The problem will be that he'll have to use a commode down here and I know he's not going to like that too much.
As I've said in the past, what's really horrible is that he is totally aware of his limitations and his frustration level is quite high. In fact we had a little problem about 6:30 tonight. He became so agitated that he had what seemed to be a mild seizure. We called the paramedics to check him out. He settled down after awhile and since all his vital signs checked out fine, we opted to not go to the hospital. He has been doing much better since and I did get him to eat some dinner.
The nurse from Duke called today and they have given me a schedule to decrease his Dilantin, slowly. Perhaps this will help improve some of his motor skills eventually, however she did say that it will take about a month before he is weaned off the Dilantin. She scheduled the MRI, to be done here at Parma Hospital on the 28th and has arranged for a social worker to call for assistance with physical therapy and occupational therapy in our home.
At this time, she has recommended that Bob not travel outside the home unless absolutely necessary as it could prove to be too dangerous in his present unstable condition. So for now lunches out will have to be postponed, however you guys are welcome here as often as Bob is able to tolerate it.
That's about all the information I can think of right now...you'll have to excuse me...I'm a little frazzled this evening. I will keep you informed as best as I'm able.
Please keep up the prayers and keep sending those positive vibes our way.
Thank you all...Love,M.C.

Thursday, May 09, 2002 at 09:07 PM (CDT)

Hi Everyone!

It's been awhile since I've given you all an update, there just hasn't been too much new to report. I don't want you all to get bored though and quit visiting this site.
Yesterday Bob went for his 3rd chemo treatment. He has one more next wed. I wish that I could report that there has been some improvement, but unfortunately that's not the case. His condition remains much the same...good day/bad day. He is still very confused and his balance is very unsteady. He needs assistance with most everything. His short term memory is almost non-existant, however his long term memory is pretty good. He is very aware of the problems he's having and is very frustrated by them. His world has become very isolated. There isn't much he can do. He watches a little t.v. now and then and only if it's very quiet here (a rarity) because he has difficulty following what's happening...even when he watches the ballgame. He is unable to read...but I read his e-mails and messages to him. H does enjoy hearing from everyone. He constantly tells me that he regrets not being able to communicate personally with everyone.
He is also very frustrated that he is unable to get more exercise. I purchased a great little trampolene..not just any trampolene...a cellerciser! He seems to enjoy it and gives him a diversion from sitting in his chair or napping. finally, after much cajoling, I got an order for some physical therapy. I hope to get that set up by next week.
After Bob's chemo yesterday, we stopped at the Sight Center. They weren't too much help, but they promised to send a caseworker out to give me some pointers on how to better assist him. I'm not sure they will be able to help me too much as there is more going on than just visual impairment.
I've also been having some communication problems between the Docs at the Clinic and Duke in regards to his medications. It has been the general concensus that he is taking too much seizure medication (Dilantin). It was decided to introduce another med, Kepra, and then decrease the Dilantin. I'm not too comfortable with the Kepra as there is no test to determine a therapuetic level like there is for Dilantin. I guess for now I have to trust what the Docs decide. This order was given per our neurologist here...I will run it by the Doc at Duke when we go there. I finally received the date for our appointment there...June 6. They want Bob to get an MRI here before we go. I'm still trying to get that scheduled...have had 3 calls in since last week and still no return call. Seems like I spend most of my time on the phone lately.
About now you're probably thinking...she said there wasn't much new yet she's written about 10,000 words...I've always been a talker, never know when to shut up...but then you all know that.
I would like to close this by asking you all to say an extra prayer for our good friend Dave Tangen. He is at Duke for his post-radiation MRI and check-up this week. Also our friend Jon who is battling leukemia, has had a little set back. He has only been home about a week after spending the last 6mos in the hospital. He had to go back into the hospital because he's developed an infection of some sort and has a fever. Please say a little prayer for him as well.
As always, thank you all so much for all your support. We'd never be able to cope with this on our own.

God Bless you all, M.C.

Thursday, April 25, 2002 at 05:43 AM (CDT)

Good morning everyone

I know this may come as a shock to you all...an update so soon. I'm not too good on the frequency of these updates...I have problems with aol sometimes. I get kicked off often, usually just after I type the complete update, and then it's lost and I have to start over. It's very frustrating. I usually end up getting mad and scrap the whole thing. I pray for patience everyday but I think it's falling on deaf ears.
Yesterday morning (wed. April 24) at 1:00am Bob had a seizure while sleeping. Once again, our house was a flurry of activity with EMS and firefighters. (We have become the source of excitement in our neighborhood.)
We spent about 4hrs in the ER. I'm happy to report that Bob recovered well, but it certainly was a short night...we crawled back into bed at about 5am and then up at 6:30. The lack of sleep is taking a little longer to recover...thus my delay in reporting.
I spent the better part of yesterday on the phone with the Dr.'s office. There was some concern as to whether Bob should continue with the planned chemo treatment yesterday, so soon after the seizure. However finally it was decided to go ahead as planned. He tolerated the treatment well. It's a great opportunity for him to take a nap, as he's hooked-up to the I.V. for 90 min. We didn't get home until 6pm., so we had another long day.
I can't say that I've noticed much change in Bob's condition. He continues to be confused and unsteady on his feet. His sight, most of the time is a real hinderance for him. He needs assistance with most everything these days. I was hoping that the increase in Decadron (steroid) would help alleviate some of the swelling, thus making things a little clearer for him, but so far it doesn't seem to have helped.
We are supposed to be having a physical therapist come to our house today or sat. to help guide us in making this place a safer environment for Bob and give us ideas on how to best assist him. (I can't wait to hear how "un-safe" our home is.) He will probably be going to physical therapy as well, to improve his strength.
His world has become pretty isolated due to his decreased vision. He can no longer read, a pastime he really enjoyed. We have gotten some books on tape, but with his confusion, he has difficulty following the story line. He does watch a bit of t.v., but again, he has difficulty following what's going on. He's really not able to follow the Indians games too well, which is a major source of entertainment for all of us. He relates best, on a one-to-one basis. We've tried music as well, but again, he says that it's mostly just noise to him. Most of the time he just prefers quiet. I hope the therapist has some ideas for us because for now, I refuse to just let him sit in his chair or nap all day. He always seems to do better with some stimulation. Thanks to very dear friends, He gets out and about for lunch often. When he comes home, he's always in better spirits.
He will have a week off now with the chemo and then 2 more weeks on. At that time we will go to Duke for an evaluation. Please pray real hard that this chemo is doing it's job.
Bob's spirits most of the time remain up...but he gets very frustrated with his limitations. He has not given up and continues to fight and that's a good thing. Please continue to send him messages...I read them to him and he does derive pleasure from hearing from you all.

We have some dear friends, Kristen and Jon, whom we met at Duke back in December. They are a young couple from Virginia. Jon is 23 (I think) and he has been struggling with leukemia. He is still there treating after a bone marrow transplant. I'm happy to report that Jon seems to be doing quite well. They are approaching day 100 of his hospitalization/ treatment and it's looking like they may be close to returning home. Jon has been plagued with some pretty yucky side-effects, but he's a real trooper and he is lucky to have Kristen who is a super caregiver. Kristen is also a great "up-dater". She up-dates Jon's journal almost daily. I really admire them both. Please add them to your prayer list and if you have a minute, send them a short note of encouragement at: www.caringbridge.com/nc/jonspage
I know that several of you also visit our dear friend, Dave Tangen's site. He seems to continue to do well and has recently finished radiation treatments. Please continue keeping him in your prayers as well. You may also visit his site at: www.caringbridge.com/mn/davetangen
When visiting either of these sites, please identify yourselves as friends or relatives of ours. We sometimes get messages from people we don't know and it would be nice if we could connect them with someone we do know or how they found out about the site.
In closing, I would like to pass along part of a prayer that I say daily...

Father, your world is ill with cancer and frightened. We pray You ease the suffering of those afflicted, give loving hands to those who care for them, and light the way for those who seek its cure.
Merciful Father, extend Your healing hand so that we may cry out, A cure at last!

Thank you and God bless, M.C.

Thursday, April 18, 2002 at 05:29 PM (CDT)

Hi All!

I know you've all been anxiously awaiting an update. I must tell you that this is my 3rd attempt...I tried to do this last night and just as I'd finish, I'd get kicked off aol and my entry was lost. I can't tell you how angry and flustered I was...so I'll try this again. I'm at daughter, Megan's house doing this so maybe I'll have better luck.
Bob's first chemo treatment yesterday went well, quite uneventful as a matter of fact. He actually slept through the whole thing. The hardest part was getting him up in the morning. He hadn't slept well the night before (Decadron, I suspect).
Before I continue, I must first say a BIG thank you to Bob's sister, Marcia...knowing how frazzled I've been lately and how I fear driving through downtown Cleveland during morning rush hour, she drove all the way from the east side to pick us up at 7:30am to take us to the Clinic. What a relief for me!
So...we arrived right on schedule at 8:30am. If only these facilities were as prompt as us...the actual chemo wasn't administered until 10:30. The I.V. was inserted, blood drawn, and some pre-chemo drugs administered...Kytril, to prevent nausea, and something else for diarrhea (I know...gross!). One of the side-effects of this particular chemo is diarrhea in the extreme, which can be very dangerous as it can cause dehydration and brain damage...now we all might wonder...what more damage? Worse than a GBM? We must keep our sense of humor.
The chemo was administered after the blood results came back...the dosage is determined by ht., wt., and blood counts. The dose Bob received was 650mg. of CPT11, slightly higher than the usual dose because he is also on Dilantin, which can decrease the effectiveness of the chemo. He will also be taking 800mg. of Celebrex every day. I talked with Christy (nurse at Duke) today and she also recommended that Bob increase his calcium intake to 1500mg./day. She told me calcium and Vit D are important when on chemo. Bob will no doubt be thrilled with the addition of more pills.
I'm happy to report that so far, today he is doing pretty good...no side-effects. They also increased his Decadron (steroid) from 12mg./day to 20mg./day...hopefully this might help aleviate some of his symptoms of confusion, unfortunately, that won't help his vision any which seems to be getting worse. He cannot read much anymore, so we are going to try books on tape and see how he likes that. This is really tough for him because he's always been an avid reader and of course he'll miss his morning ritual of reading the newspaper.
Again, thank you all so much for all your thoughts, prayers, flowers, meals...I really hate to cook and the flowers really brighten our spirits. Now is there anyone who likes to clean bathrooms or iron...just kidding!
A Big thank you to all of Bob's buddies and co-workers for your continuous support...cards and especially taking Bob out for lunch on a regular basis...he really enjoys it. You guys are the greatest!
I will keep you all updated whenever aol permits.
God Bless and love, M.C.

Thursday, April 11, 2002 at 11:56 AM (CDT)

Dear family and friends,

It is with a bit of trepidation that I write this new entry...mainly because I DO NOT WANT our fellow GBMers out there to become discouraged. Keep in mind all you've been told and read...every tumor is UNIQUE to the individual, no two are alike.
For the past 2-3wks, I have noticed that Bob's condition had been deteriorating. He's been very confused, his vision (peripheral vision) has decreased significantly, his balance is off (he's had a few falls), short and long term memory loss and extreme fatigue. Upon my request, Bob had an MRI on Mon. (4/1). On Tues. (4/2), we met with his Docs at the Clinic for his routine appointment. I'm afraid the news was not what we anticipated. It seems there is now a tumor present in the left occipital region. In addition there is tumor present and extreme swelling in the right temporal lobe (original tumor site).
I spoke with Dr Quinn at Duke today and they confirm these findings. The fact that the cancer is multi-focal (in more than one area) now complicates things a bit. Unfortunately, at the present time, there is no protocal (clinical trial) going on for this. Neither the Clinic nor Duke believe surgery to be an option...it may do more harm than good at this point. Therefore a continuation of chemo is the plan for now.
Bob has had 1 cycle of chemo...Temodar. The Docs say it is too early to tell if the Temodar had any effect, but in light of recent developments a more aggressive approach is warranted. Originally the plan was 2 cycles of Temodar followed by 2cycles of CCNU. Dr. Quinn said Temodar and CCNU are so similar, that if the Temodar was ineffective, most likely the CCNU would be as well. Therefore, the proposed treatment would be chemo using CPT11 (I don't know right now what that is) combined with Celebrex (at a higher dosage than he's presently on). This is what they term a "pilot study", similar to a phaze I trial. It differs in that the phaze I&II trials have already been done using CPT11, but not combined with Celebrex.
Dr. Quinn said that this progression of the disease indicates that the "seeds" for tumor were present at the time of the Monoclonal Antibody treatment or that this is just a very aggressive tumor...pardon me, but NO SHIT!
Anyway, the CPT11/Celebrex is administered by I.V. The infusion takes 90min. He would be administered the drug on the 1st/8th/22nd/29th day. The cycle lasts 6wks. We are scheduled to return to Duke about this time, May 15&16. At this time there should be some indication if this treatment has been beneficial.
The Docs have also got him back on the dreaded Decadron (steroid) for the swelling...hoping to decrease some of his present symptoms. I believe it's helping already as he doesn't seem as confused today as he has been. He's instructed me to be firm about controlling his urge to eat non-stop. He recently lost the 35lbs. he gained while on Decadron in the past and really doesn't want to gain it back.
Bob's spirits are pretty good...he's amazing and a real inspiration to me. He's ready and willing to continue the battle. He says "the greater the challenge, the greater the victory".
So, as we face this new bump on this already rocky road, I would humbly ask that you keep praying and keep sending that positive energy...thank you, God bless, M.C.

Friday, April 05, 2002 at 10:29 PM (CST)

Hi Everyone!

Just a note to let those of you who may be interested...this Sunday (April 7), an interview with Dr. Henry Friedman at Duke University Medical Center will be on 60 Minutes, 7:00p.m. EST. He will be talking about the treatment of brain tumors and more specifically about the Monoclonal Antibody treatment, which Bob had in January. Be sure to tune in...I'm sure it will be much more informative than the information I've tried to relay to all of you.
Bob is scheduled for an MRI on Monday (4/8) and he will be meeting with all his docs at the Cleveland Clinic on Tuesday (4/9). I will be posting an update as soon as I'm able.
Please say a few extra prayers that all goes well. Thank you.
Love, M.C.

Tuesday, March 26, 2002 at 07:39 PM (CST)

Here's just another update. things continue to be going well so far with the chemo phase.That is, judging by the way I've been feeling. No unpleasant side effects so far. Been feeling a litle lazy and "dopey" ,(which might be from the Temador and/or Dilantin)but some who know me well enough probably wouldn't notice anything different.about me. I've been forcing myself tokeep up with workouts at the rec center,so that seems to be helping.In May, it's back to Duke Medical for a PET scan and an MRI(5/15)and a clinic appointment on 5/16. Meanwhile there are always the weekly blood tests. (But no complaints here as long as things continue to go as well as they appear to be. Right now, let me address all whose messages onthese pages have done more to boost my spirits than you can ever know. But Imust also confess to more than a litle embarassment at many of your praiseworthy sentiments. Trust me, i'm notthat strong, not that brave,and, not nearly made of of the wonderful qualities expressed in many of your kind messages. Whatever strength I have comes from family, friends and from all those who are praying for me and for my family.Please continue praying for us. We all need each other. Thank you all.

Wednesday, March 20, 2002 at 06:06 PM (CST)

Hi Everyone!

Well, it's been one week today that Bob had his first round of chemo. I must say he tolerated it quite well with few side-effects. The chemo drug was Temodar (Temozolomide). One hour prior to taking this, he took a drug, Kytril, to prevent nausea...which must have worked because he didn't experience any. He took this for 5 days at bedtime. The plan is to be off now for 23 days and then do another round of the same thing. He continues to have blood tests every week and they will partly determine the continuation of the chemo. In addition to these new drugs, he is taking Zantac (antacid), Decadron (anti-inflammatory), Dilantin (anti-seizure), Celebrex (a drug commonly used for arthritis...you know the one with those annoying commercials of the lady in the park doing her Tai Kwon Do... but has also proved effective inhibiting the formation of new blood vessels, which feed tumors), plus his multi-vitamin. This is somewhat distressing to a guy who hardly ever took a Tylenol before. Keeping all these drugs straight is quite a challenge.
As I said, presently Bob is doing well. We are having a slight problem regulating his Dilantin. We can't seem to reach a "perfect" therapeutic dose...meaning enough to prevent seizures, yet not too much as to cause unsteadiness, confusion and excessive tiredness. It was suggested today that they may cut down on the Dilantin, but add another drug...I'm sure Bob will be thrilled at the prospect of that! He's a trooper though. He does what he has to do with very little complaint...much better than I would handle all this. He continues to fight the good fight! He couldn't do it, and neither could I, without all the support and prayers from all of you...our deepest thanks.

Love you all, M.C.

Wednesday, March 13, 2002 at 08:19 PM (CST)

Welcome web-site browsers. Here's today's latest update. Today is a milestone day: Today I started chemo. My latest blood test showed my platelet, white cell and neutraphil counts were sufficient to get started. As of tonight, I'm now taking temador (the chemo drug) along with several other pills I had already been on such as decadron, dilantin, zantac, vitamins, and some other stuff such as claritin, celebrex, and not to mention another new drug called kytril. Don't ask me what these are all for. My chief alchemist (MC) knows more about this stuff than I'll ever learn. At this point, the big unknown is what side effects, if any, will accompany this therapy. Actually, as I write, I'm feeling as good as I've felt for the past several months. I've been working out at the local rec center for two weeks and feel stronger with more energy and endurance. Except for having to take all these !#x@#!! pills, I sometimes almost forget why it is that the docs say I'm the sick one.
There is no rationale for feeling this well except the docs just might know what they're doing. But the major reason, I know, is the mountain of prayers that are being sent up on my behalf. You guys - and you know who you are- have really gotten God's attention. Thank you. Thank you. Please keep it up and know i'm praying for all of you in return. God Bless. Bob

Saturday, March 09, 2002 at 06:22 AM (CST)

Hi everyone!

Well, I guess I reneged on my promise to do better updating this web page...I have no excuses, so I will offer none.
On March 1, Bob had a follow-up visit with Dr. Stevens (neurologist in charge of regulating seizure control) and Dr. Peereboom (oncologist, who will over-see and facilitate Bob's chemotherapy).
Dr. Stevens increased Bob's Dilantin (seizure med) 50mg, for a total of 650mg/day. He also told him to continue taking the 2mg/day of Decadron (steroid/anti inflammatory). His reasoning was, while Bob's Dilantin level is within "normal" limits, the fact remains he did have seizure activity while taking the 600mg of Dilantin and no Decadron. It's sometimes tricky to determine a "perfect dose", as too low or too high, can trigger seizures. The combo seems to be working well, for now, as there has been no seizure activity since Feb. 16.
Dr. Peereboom explained that Bob's platelet count of Feb. 22, (97,000), was not unusual following the Monoclonal Antibody treatment and anticipated that it would increase soon. Therefore, he gave us the prescription for the Temodar, the first phase of his chemo. Talk about sticker shock...! As I explained before, the Docs at Duke wanted his platelet count to be at least 125,00 before Bob began chemo. We have since received the lab results of his Mar.2 blood work. His platelet count is up to 165,00. That's the good news...however, now his white bood count and neutrophils are too low. White blood cells fight infection, neutrophils are the first line of defense in fighting infections. Now, we must wait for those counts to increase before beginning chemo. Since chemo depletes your immune system, it would not be wise to begin the treatment if his system is already compromised. So we're still on a holding pattern. Today, he is getting another blood test, so add an extra prayer that those white cells are multiplying.
Bob is continuing to do quite well. He has joined the rec center and has been getting a little gym time in each day. We met with a nutritionist last week and so we have become more conscientious regarding his diet. I'm happy to report that his appetite has increased some and he is eating much better now and healthier...wish I could say the same for myself!
I will continue to keep you all informed regarding his progress. In the meantime, I want to thank those that have been checking this site and have left messages...we really look forward to reading them, especially Bob. His computer skills, as well as mine, are quite limited. One of the few things we can do is access this site, so we really enjoy hearing from you. I know there are still many of you out there checking this site, however you're not signing in...please leave us just a short note...we know you're out there...we can hear you breathing! There are no rules limiting the number of messages you may leave. If you've checked other patient websites, you will see that some receive daily messages from family and friends...I'm not suggesting daily entries, but we would like to hear from you.
Please continue to keep Bob in your prayers...God bless you all, M.C.

Friday February 22, 2002 8:44 AM CST

Hi to all family and friends (old and new),

It sure has been great to receive so many messages in the guestbook entries...it is the highlight of our day! Are you thinking maybe we all need to get a life?
I know how boring it is to check in day after day and not see anything new, as everyone is anxious for updates. Truth is, not a lot has been happening since our return from Duke...unlike Dave, who has provided us with his serious, yet somewhat comical antics of late. (I'm truly not poking fun at you Dave).
I could regale you with Bob's recent antic of sneaking out and driving himself to the office, (one of the very rare times when he was left alone), but then I'd do that at the risk of starting WWIII around here, so I'd better refrain. All's well that ends well!
Today I, (notice the, I part), am taking Bob for a blood test. Keeping an eye on his platelet count...needs to come up some before he can begin chemotherapy. He's not anxious to begin that next phase, but is however anxious to get on with the "Fight".
Bob has been doing better. His appetite has improved and he hasn't had any noticeable seizure activity since last Saturday. We took it upon ourselves,(the "Dave Tangen approach") to alter his Dilantin dose. The Dr. at Duke believed his dose of 600mg./day too high. He gave us instuctions to consult immediately when we returned home with the neurologist for an adjustment. Too much Dilantin can cause seizures as well as too little. The night he went to the ER at Duke, the attending, increased his dose to 700mg./day. When we went to the CCF (Cleve. Clinic), his Dr. thought his dose excessive as well. Unfortunately, we can't get an appointment with the Dr. who regulates this until Mar. 7, so we decided to alter it ourselves. So far, so good!
I'll try to be better with these updates...I don't want to risk you all getting bored and not checking in. Bob does really look forward to all of your messages.
Thanks for your continued support, thoughts and prayers. It means more than you'll ever know.
We especially thank all of the new friends, those that we've never met, who have joined our fight with their thoughts, prayers and expressions of support.
In closing, I would like to share with you a little prayer that was given to me back when this whole saga began:

Dear Lord, I beg You to help (name of person who is afflicted with cancer.) I love her/him so much and I find it very difficult to watch her/his suffering.
As You cured St. Peregrine of a terrible malignancy, I ask You to cure her/his illness. Please relieve her/his pain and guide the doctors in her/his care. Give her/him the strength to bear whatever is to come according to Your holy will, Dear Lord.
I ask that you give me the patience and wisdom to comfort her/him as best I am able. Help me to face the uncertainty of the future.
I ask that You bless her/him with the knowledge of Your love, Dear Lord, and with the warmth and caring of all of us who bear this burden with her/him. Amen

God bless you all...M.C.

Friday February 15, 2002 9:28 PM CST

A big "HI" to all friends and relatives!

Just returned this afternoon from our follow-up visit to Duke...a short, but somewhat exhausting couple of days. Thank you all for your well wishes and prayers.
Wednesday, Bob had an MRI and PET scan. Thursday, he had a neuro-psych test, which he passed. (You needed not to have gone to such extremes, Dave, to avoid taking this test...it wasn't that bad!) After that, we met with Dr. Rich (a fine name for a Dr.) and his nurse. They had good news for us as well. Bob's MRI was good...showed a little swelling at the site of the radiation, which they explained was not unusual...we'll take their word for it. His platelet count was a little low, 99,000. They want it to be 125,00 minimum before he begins chemotherapy. He will be getting weekly blood tests to monitor this. When his levels reach the desired range, then chemo will commence. There were still a few results from the blood draws that weren't available yet. One thing they are checking is his thyroid activity. There is some suspicion that his thyroid is hypo-active, due to some things he is experiencing...he is always cold, some tingling in his extremities, loss of appetite and energy, to name a few. He hasn't been too unhappy about the loss of appetite since as a result he's lost all the weight he gained on that dreadful decadron (steroid). He actually weighed in 4# less than when he was diagnosed. However a continued weight loss would not be a good thing.
Some friends, generously, paid for our stay at the Millenium Hotel and much coveted tickets to the Duke/N.C. State basketball game. To our suprise and pleasure, they were primo floor seats. Our pleasure was short-lived however. I suspect, and I'm sure you know who you are,
must be slacking off a litttle on the prayers! I'm only kidding. We had only been at the game for about 20 min., the team had just made their entrance and were warming up when Bob told me he was feeling a "little funny". He had some tingling on his left side and he felt a little disoriented. I could tell by the somewhat blank look on his face and his confusion in answering my questions, that something was wrong. I summoned help. The paramedics escorted him into the hallway and checked him out. I explained that these symptoms usually preceded a seizure. His vital signs were good. His blood oxygen was a little low, so they administered oxygen and started an I.V. They called another unit to transport him to DUMC. We never saw one play of the game...he was really bummed about that and the fact that he didn't even have a chance to get some popcorn. A short time after we arrived a DUMC, he had a seizure. It wasn't pretty but he never lost consciousness. A milder seizure than in the past when he had to be paralyzed in order to stop the seizure. The medicine they gave him stopped the seizure after about 15 min. After that, he just slept. They took him for a CT scan. Later the neuro-surgeon on call told us that the scan looked good...no problems there. They gave him a dilantin boost, and ordered decadron for 7 days. It was a long evening...we didn't get to bed til 4:00 a.m. We had to get up a 7 for our flight back home. Needless to say we are both exhausted! Thanks to some wonderful friends, I didn't have to cook tonight.
We have an appointment on mon. (18th) with our Docs at the Clinic. Will keep you all updated as best I can.
You can't possibly know how much we appreciate all your prayers and kindnesses. Love to you all, M.C.

P.S. To Brian...You coordinate tickets to the game...Bob has a seizure, you and Bob go out for a beer...Bob has a seizure...I think I'm starting to see a pattern here!

Monday February 11, 2002 11:06 AM CST

Here is a look ahead at what's happening this week. On Wednesday (2/13) MC are heading back to Duke for two days of follow-up tests, MRI, PET scan, Neuro-Psych and then a sit-down with one of my docs. We'll be back on Friday. If everything goes as expected, we'll have a better idea about my return to the real world. Can't wait,but that's up to THE POWER That Be. Wish me luck! Bob

Wednesday February 6, 2002 9:38 AM CST

Here is the latest LONG OVERDUE update for all who have been so kind to check in with their expressions of love,care and concern.(even including a few good-natured potshots taken by some few (and you know who you are BDK) Doesn't matter, I'm happy to hear from everyone!
So here's the scoop. I have been feeling exceedingly well since returning from Duke almost three weeks ago. Next it's back to Duke for a two-day followup series of MRI, PETscan, neuro-psych test,and hopefully a sit-down with my doc to discuss the next phase of treatment,i.e., chemo. It's all along the road to beating this thing!
Thanks again for all the prayers and love. And peace and good health to all. Bob

Wednesday February 6, 2002 9:38 AM CST

Tuesday January 29, 2002 8:41 AM CST

It's the "morning after" after a fabulous birthday party last night at Laura and Gene's wonderful restaurant, "Circo/Zibbibo". To all those of you who were able to make it, thank you, thank you and I hope you had as good a time as I did. And wasn't the food, drink and ambiance absolutely great? And for all who could not make it... there's always next year!
A little get-together like this among family and friends does a lot for healing body and soul. I will always treasure these moments and remember all of you in my prayers.

Thursday January 24, 2002 7:14 PM CST

Well, FINALLY! Here is the initial journal entry for this web page by yours truly, Bob Hurt. Having a web page named for yourself is a pretty heady experience - initially. Then,the thrill wears away when my extremely minimal computer skills shows what a technological dolt I am. So, by admitting right up front my ineptitude, I apologize for any and all errors, grammar-wise, content-wise and, particularly, thought-wise, that may eventually show up on future entries.
There will be others, especially the Love Of My Life - my Number One caregiver- MaryClare (MC), who will fill these pages with history, updates and anything pertinent to this journey which began last summer.
Finally, to any of you who wishes to visit this web page in the future, thanks to all of you whose prayers, support, concern have immeasurably broughtcomfort to me and to my family. Words are inadequate to express my gratitude and love. God Bless you all!
P.S. I cannot close now without first acknowledging my thanks to my new friend Dave Tangen from Minnesota whose own web page (www.caringbridge.com/mn/davetangen) was the inspiration for this and to whom I extend my sincerest best wishes for ongoing success in our mutual journey down this path. You're in my prayers, bud. God Bless to you and your family, too!

Thursday January 24, 2002 7:14 PM CST

Well, FINALLY! Here is the initial journal entry for this web page by yours truly, Bob Hurt. Having a web page named for yourself is a pretty heady experience - initially. Then,the thrill wears away when my extremely minimal computer skills shows what a technological dolt I am. So, by admitting right up front my ineptitude, I apologize for any and all errors, grammar-wise, content-wise and, particularly, thought-wise, that may eventually show up on future entries.
There will be others, especially the love of my life - my number 1 caregiver- MaryClare (MC), who will fill these pages with history, updates and anything pertinent to this journey which began last summer.
Finally, to any of you who wishes to visit this web page in the future, thanks to all of you whose prayers, support, concern have immeasurably broughtcomfort to me and to my family. Words are inadequate to express my gratitude and love. God Bless you all!
P.S. I cannot close now without first acknowledging my thanks to my new friend Dave Tangen from Minnesota whose own web page (www.caringbridge.com/mn/davetangen) was the inspiration for this and to whom I extend my sincerest best wishes for ongoing success in our mutual journey down this path. You're in my prayers, bud. God Bless to you and your family, too!

Tuesday January 22, 2002 8:39 PM CST

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