Bill's Friends and Family

Monday, October 29, 2007

Chat Room Monday- 7:30pm Central time

Yes, That would be 7:30pm CST at this house- 8:30pm EST for the rest of you. I don't think anyone reading the blog is on Mountain or Pacific time. But I'm sure I will get corrected if I missed someone. Nancy/Mom

Chat room- Monday at 7:30pm

Bill is home this week. His blood count numbers are rising and he feels pretty good, relatively speaking. He would like you to join him on the Chat room site tonight at 7:30pm. See you then, and yes you can do it. I don't want to hear any excuses. Jon made it easy.

For our Grace UMC friends. Bill will not be in church this Sunday because they are giving flu shots. That is an active virus that he does not need right now.
If our local friends have time to stop by, this is the week to do it. When his immune system is at it's best. Call to check on his "napping" schedule.
Kari, Jeff and baby Andrew will be visiting from North Carolina on Friday and Saturday. It will be a busy weekend.

I probably won't enter another blog until next week. It will hopefully be an uneventful week. For those who were concerned about Bill's skin, Leukemia Cutis, it is looking very good. The chemo did it's job there.
Your support has meant so much. Bill is surrounded by your love. Bless you.

Friday, October 26, 2007

October 26th- Good New, Bad News, Good news

First off, we arrived at the Cancer Center at 11:45am and were finished at 5:25pm. The winner of the “Bill Huber blog site Loyola Cancer Center treatment schedule predictor” is our daughter, Janine, at a predicted time of 5:22pm. Congratultions! We left the center just in time to hit Friday rush hour traffic, in the rain. But a church friend, Julie, read the blog and knew it would be a long day, and brought dinner by at 7pm. It was a blessing.

Today was full of good news, and not so good news, followed by good news. Here is how the day went.
Bad news: Last week Bill’s torso and back were covered in a red/purple rash, which the doctors call “Chemo rash”. Plus, he had large red bumps all over his extremities. The doctors took a biopsy in 2 places. Today we met with the dermatologist to have the stitches removed and she told us it is Leukemia cutis or Leukemia of the skin, common with his form of Leukemia.
Good news: The chemo treatment he is currently being given will eliminate this cancer. And we are already seeing healing results. The rash is almost gone, and the red bumps are much smaller. Amen.

Bad news: We learned today that Bill’s type of Leukemia, M-4, is one that migrates to other parts of the body. It does not stay in the blood. That is why it went to the lining of the brain, inside the brain, spinal fluid, and skin.
Good news: There are no signs that it has attacked any other organs of his body. Amen.
Bad news: His chemo treatments next month will be increased to 5 consecutive days of chemo, two 3 hour treatments a day, with 12 hours in between treatments. He will stay at the hospital all week. It will be a brutal week for him. And a tough recovery.

Great news: Dr Shafer said his CSF (cerebral spinal fluid) was clear on the previous sample and clean of white cells. He will only need injections of chemo into the Ommaya reservoir once a week (and not every 3 days). Amen.
Good news: The chemo he had last week is killing the Leukemia cells in his brain, and Bill continues to show signs of improvement in brain functions. Amen.

Good news: The Neulasta (white cell builder) is just beginning to work, and Bill’s blood count numbers are on the rise. We won’t make it to church this weekend, he still has no immune system, but are hoping to be there Nov 4th before he goes back into the hospital. Just look for a guy wearing a face mask and a smile from ear to ear because he is out of the house.

This is probably way more information than you wanted to know. But, this was the reality of our day, and there was more good news than bad news. We are still fighting the battle, and still need your prayers. Amen.

Tuesday, October 23, 2007

October 23- Tuesday at the Cancer Clinic

October 23
I had another chemo treatment through the Ommaya Reservoir today with no ill effects. For those of you with a noon over/under, we were in the car on the way home at 12:55PM. My blood counts have been low from the previous chemo and I have been getting transfusions of platelets almost daily. I hope that my energy levels will increase in the next day or two. I am scheduled for another treatment on Friday afternoon and a trip to the dermatologist. We start at 12:30PM so we should be done around 5:00PM. Please send your comments relating to a 5:00 PM over/under for completing the treatment. The person coming closest to the actual completion time will become the official Bill Huber blog site Loyola Cancer Center treatment schedule predictor and entitled to all of the benefits that go along with the title, which are too numerous to mention at this time.

I thank you again for all of your interest and comments and look forward to reading the next day’s comments and bestowing the title of schedule predictor on the deserving individual.

May God wrap His loving arms around you and your loved ones,
Bill

Monday, October 22, 2007

October 22- Quick Update

Just a quick update to let you know Bill is doing fine.
Over the weekend his CBC (blood count) took a dive, as it should for the next 2 weeks. So he can no longer be exposed to bacteria, viruses, or fungus. Home Health Care came by Sat and Sun to give him transfusions of red cells and platelets to keep the numbers stable.
We saw the hematologist today for just a visit, and will return on Tuesday for his second chemo injection in his Ommaya Reservior, more platelets, and have his stitches removed from surgery. So, it's a big day tomorrow. All this should be accomplished by noon.
Hopefully, Tuesday's visits will be uneventful, but I will let you know tomorrow evening.
Nancy

Friday, October 19, 2007

How to Chat, by Jon Huber

So, you’re being forced to join a chat room. It’s very easy, and I might provide too much information, which may result in more confusion than clarity. If you have any questions, then add a comment to THIS post.

First, click on the link to the Chat Room.
Bill's Chat Room

You will get a ‘loading’ screen; give it a few seconds to load. If you get an error, try this link, it will install the most recent version of Java, it’s free:
http://www.java.com/en/download/index.jsp

After the Chat Room loads, you will be prompted for a Username. You can enter in anything you want, but something that can be associated with you is best. For me, Jon, JonH, JonHuber, Jon Huber, Jon Says Go Vols are all good Usernames. You can change the Username at anytime you re-enter the site.


Once logged-in, chatting is ‘easy’. Type what you want to say, then press the ENTER Key. Really, that’s it.


As a note, all the typing will disappear if you re-open the page. The chat room is not meant to be a ‘long term’ transcript, if you want to say it and make it last forever then add it to the blog.

October 19 - Day 2 and Counting

Not much happening today – eat, nap and read. I am almost through David McCullough’s 1712 and after that, I will tackle two more revolutionary war era novels. After my doctor visit on Monday, I am going to establish an exercise program to work on stamina and general body strength. For those of you who know me from Knoxville and London, I weigh about the same as when I was living there and running 25 to 30 miles a week. I wanted to get back to that weight, but I had a different method in mind of getting there.

As usual, Nancy is my biggest booster and keeps me on track and moving forward. Her tireless spirit and energy are an inspiration to me.

Now that I realize that I can solicit over a dozen comments by writing a couple of short paragraphs, I will add writing the daily blog to my daily therapy. Your comments make me laugh, cry and feel very thankful to have such wonderful family and friends. Your comments also make me realize how quirky and somewhat crazy this circle of family and friends is. However, I do not believe brain surgery will fix this bunch.

Jon wants to set up a chat room on this site so that we can communicate for an hour a day. Let me know what you think.

Thank you for your support.
Bill

Thursday, October 18, 2007

October 18- Day 1 and Counting

Today is Thursday October 18 and my first day to be truly at home. For all of those who wish to know what its like to have a second hole in your head, I would like to describe it in great detail, but as they say, ”I have a hole in my head, but that’s beside the point.”

I feel much better than when I was discharged two weeks ago. At that time, things seemed to be moving in slow motion. Since Monday’s surgery I feel much more alert and aware of my surroundings. However, I still need a nap every now and then. With the medication regimen they have set up for me, hopefully I will be able to settle into a routine in the next few weeks and build some strength.

Thank you so much for your blog comments. They have lifted my spirits and have given me a push forward to face the new day.

Warmest Regards,
Bill

Wednesday, October 17, 2007

October 17- Home again

It has been a long day of waiting. We have definitely been on "Hospital Time" today.

Bill received his first chemo injection into the Ommaya Reservoir this evening at 7 pm. There was a holdup because his platelets were below 50,000 and he needed a second transfusion to bring them up to an acceptable count. He was a brave soldier while he received the injection and there were no side effects. (Side effects are immediate when chemo is injected into the spinal fluid.) He will receive injections every 3-4 days until the spinal fluid is a clear color and tests negative for white cells.
We are home, he is not only in bed, but fell asleep as soon as his head hit the pillow.

He had a neurological test done today to test different parts of his brain and proceeded to tell me that I would have failed it. (He is probably right). Better line me up for an MRI next week. In fact, Jon thought we should just buy an MRI machine and we could all be tested.
We have 3 trips to the doctors next week. Hopefully they will all be uneventful.

Jon has talked about instituting a "Chat room" on this site. Hopefully, Bill will feel like working on the computer, and he can schedule a time that he is online. Then y'll can ask Bill questions directly and get an immediate answer. Hope this works. We will talk about this in the morning. Good night.

Tuesday, October 16, 2007

October 16th- Where in the world is Bill Huber?

Did you ever loose someone in the hospital? Jon and I were with Bill in Neuro ICU on Tuesday morning. We needed to leave for just a few minutes, and when we returned the room was empty. Empty of Bill and our belongings, (which included tonight’s dinner in a cooler). We knew the elevators were slow as molasses, so we ran 4 flights of steps to the Hematology floor, and actually beat Bill to the room on the 6th floor. He looked surprised to see us walking down the hallway towards him.

Bill is improving every hour. He is now asking questions, responding to questions asked, eating and watching less TV. He even got on the blogsite and read all your messages for the past 5 days. It won’t be long, and he will be a blogger writing his own story each night. It is amazing what happens when an unwelcome substance is removed from your brain. BILL IS BACK!!!

Bill’s first round of chemo (Methotrexate) will be given by injection into the port on the top of his head on Wednesday. We are told this is painless, and has only the typical chemo side effects. Cancer cells in the brain are very slow growing, so only a few injections will be given over the next several months. The doctors are not saying how many injections there will be.

Today Bill was given a drug called Neulasta. It will stimulate the growth of the good white cells to help restore his blood once again. His blood counts were:
White cells: 2,200 HGB: 8.4 Platelets: 58,000
These numbers are on the low side, and may get lower as the chemo drug he had last week does it’s job. He will be monitored at home (Home Health Care Nurse) to keep his blood supply at the right levels.

You will love this story.
The doctor wanted a psychological evaluation done on Bill for depression. When asked the question “Are you depressed”. Bill responded, “No, why would I be depressed. I have so much to be thankful for”. Now that is the man we know and love. Amen.

Monday, October 15, 2007

October 15th - Don't Call It a Comeback

After some time with Bill, he’s doing significantly better. As a clarification, what the doctors called ‘fluid’ in the right frontal lobe the neurosurgeon called ‘blood clot’. Mom and I reviewed the pre-OP MRI; the clot was ¾” thick and spread over the entire quadrant of the frontal lobe. Based on a post-OP MRI the Ommaya Reservoir was placed ‘perfectly’ and a majority of the fluid was removed. There’s still leukemia in the brain, which is why the Ommaya Reservoir was installed.

He is himself. He was laughing and conversing. In fact, we had him laughing so hard he hurt due to the tubes and general post-OP soreness. It was the most I’d seen him laugh all week. Every time I saw him laugh, it brought a couple of tears… the good kind.

The fight is still ongoing and he still has a bumpy road ahead, but seeing him today let me know he’s equipped for the challenge, with Mom’s help. Tomorrow he moves from ICU back to his ‘home’ on the leukemia floor. The ‘what’s next’ still remains open.

This blog is probably my last; Dad and the website are back in Mom’s hands. She’s living with this fight and still has a lot of hard work ahead of her. I hope all of you Chicagoans can continue your support.

Jon

October 15th - Bionic Bill

Bill got into surgery at 11:45am and the procedure was complete at 12:30pm, no complications. Mom and I are still in the ICU waiting area. There's typically a 2-3 hour hold before they transfer him to a room, at which time we will pay him a visit. During the process, the neurosurgeon removed a blood clot in his brain with the same incision used for the Ommaya Reservoir. No answers on the clot, but the doctors need to meet at the round table before communicating to us.

The plan is for Bill to leave the hospital Tuesday and his Spinal Fluid Chemo will start Wednesday or Thursday. However, nothing is definite until it actually happens. This weeks findings were a slight deviation from path to recovery, but I think we're back on track.

Thanks to all of you for your support.
Jon

Sunday, October 14, 2007

October 14th - The Day Before the Day


It’s still Jon on the keyboard. I have a little bonus time in Chicago. As you can see, Bill has been prepped for surgery and is ready to get it started… and finished. It will occur between 8am and 11pm Monday. At least the cable company provides a 4-hour window. He is growing impatient of the hurry up and wait mentality. Sound like Bill to any of you?

He also wanted to show-off his Halloween costume before all the Trick-or-Treatin’ starts. After further review, I’m thinking Apple Jacks not Froot Loops.

I’ll put a quick post tomorrow after he’s done surgery.
Jon

Saturday, October 13, 2007

October 13th - Long Night of Chemo

It's 11pm CST and there's about an hour of chemo to go. Mom is back in town and the three of us are sitting around watching football highlights (Mom will be asleep soon). We are all looking forward to getting home. Dad will get a good nights sleep, but we will return Sunday afternoon to get Dad prepped for surgery.

Surgery you ask? Yes. Dad is getting an Ommaya Reservoir installed sometime Monday. This apparatus acts as a quick-connect valve to inject chemo directly into his spinal fluid. It will go under the skin on the side of his head. They will take a 3D image of his brain and that will guide them through the surgery. A neurosurgeon glued the nodes in place, it looks like he has Froot Loops stuck to his head. Very 'Matrix', if you get the movie reference.

A new chemo schedule has not been communicated to us, but the doctors prefer to wait 48 hours after the surgery to start chemo. Our guess is that he will stay in the hospital for a couple of weeks, but nothing is concrete.

The original plan was for me to get on an early flight back to Knoxville on Sunday, I'm now going to leave Wednesday afternoon. I can't leave the food from the support group (Grace United Methodist - Questors Sunday School Class), it is too good.

Keep praying for Monday's surgery (special request from Mom).
-Jon

Friday, October 12, 2007

October 12th - More Results

The best news for Dad is that he's home for the night. His first task was a 2 hour nap, sleeping at home is much more peaceful than the constant interruptions at the hospital.

This evening, Dad got the results from the spinal tap. The spinal fluid does contain leukemia.
At the moment, we don't know the details. The neurosurgeon will meet with Dad tomorrow before the Saturday chemo treatment. Good news is that this week's chemo treatment does penetrate into the spinal fluid, the initial treatment did not. The doctors did mention the are going to treat this cancer aggressively.

Dad took the news in stride. He said a backlash from the leukemia was not surprising because of how sick he felt. He's still fighting.

Jon

Thursday, October 11, 2007

October 11th - More Tests for Bill

No answers today, but two more tests were performed. The morning started with another MRI, this time on the upper spine where the neck meets the brain. They are looking for more 'dead cells', but more important, the MRI will act as a baseline for future exams. The second, a LP (Lumbar Puncture, aka Spinal Tap). These results are expected on Monday. The big question is if the spinal fluid contains leukemia or not. Lots scenarios based on what they find, to be continued.

Dad is spending another night in the hospital... it's possible he will get to go home Friday. Regardless, he will return Saturday for a chemo dose.

The best news is that Dad ate food. Yesterday, he ate very little. In his defense, dinner was cafeteria style roast beef. It did not look tasty, and I wouldn't blame anyone for not eating it. Today, I brought rigatoni from home and warmed it up when he was ready to eat... he was a member of the Clean Plate Club. It is good to know he still has an appetite.

Jon

Wednesday, October 10, 2007

October 10th - "The Results Show"

The doctors have conviened, and the results have been submitted. Dad has fluid in the Dura Membrane layer in his brain. What is the Dura layer? Wikipedia has the scientific answer http://en.wikipedia.org/wiki/Dura_mater.

Specifically, fluid has gathered in the right frontal lobe of his brain, the MRI and following CT Scan found clusters of dead cells in this region. As the chemo kills large amounts of cells, some gathered in the Dura Layer. It's possible that the cells caused a minor hemorrhage... given Dad's inability to clot his blood during chemo, the small hemorrhage was a bit more significant. The 'fluid' has been classified as 'old', so no one knows when it started... but all tests suggest that the inflammation is NOT getting worse.

The right frontal lobe controls personality and planning. As the fluid in the membrane imposes a pressure on that region, the brain function in that region is inconsistent. All you RNs and MDs correct me where necessary (DDS or DMD responses will not be considered).

So, what's next you ask? The current opinion is that draining the fluid will cause more harm than good... my impression is that the doctors don't think the swelling will get worse. A spinal tap will occur tomorrow. They want to get some data on the fluid... does it contain leukemia, what are the dead cells, etc.

How was this just discovered today? I blame Dad's stubbornness. He puts on a good show when the doctors / nurses ask him questions, but Mom and I agree that he 'shuts down' with us non-medical people in the room. The credit for the discovery goes to the RN (Marion). When admitting Dad, she was grilling him with medical questions, and his 'front' came crashing in. She talked with doctors, doctors asked me some questions, tests were requested... you know the rest.

I'm glad these discoveries were made. Dad is not himself and he's doing his best to fool everyone. His body is still responding to the chemo, his bloodwork is still good. There's just one more hurdle for recovery. Keep him in your prayers.

He has another night in the hospital and he's not happy about it.

Jon

Tuesday, October 9, 2007

October 9th - Orderly Jon

Well... Nancy (Mom) is off in Charlotte being a Grandmom with Kari's new bundle of joy. Hence, why I'm up in Chicago daddy-sitting and in control of the blog.

The second round of chemo has started (ARA-C). The hospital was running a bit late, we arrived at 8am, but chemo didn't begin until 5pm... it will end around 6am Wednesday. Today, bloodwork was good, but I don't have any numbers... or a run chart... maybe tomorrow.


While Dad's bloodwork is holding steady, the doctors are concerned about his energy level. He is too lethargic for this stage of chemo, and at times he has trouble completing his thoughts. With so many factors contributing to his condition, a defined diagnosis has not been determined. A MRI is scheduled to dive deep into Dad's inner thoughts. I'm hoping an analysis will be provided in the next couple of days.

Jon

Friday, October 5, 2007

October 5th- Bone Marrow Results

Once again, as the doctors predicted, Bill’s bone marrow is “clean”. That means less than 5% white cell blasts. This is what the doctors want to see, and they say his body is ready for the next round of chemo.
Bill will return to Loyola Medical Center early Tuesday morning. He will have a 3 hour chemo treatment of just one drug. Rest for 8 hours, then repeat another 3 hour treatment. He will either spend the night in the hospital, or come home, depending on the hour that they finish. Jon arrives on Monday, so he will be taking Bill to and from the hospital, a 1 1/2 hour drive in rush hour, or 45 minutes other times.
Bill will return on Thursday and Saturday for a repeat of Tuesday. Then home to rest and rebuild his blood supply again.

The doctors say, and we are hoping, that this round will not be as brutal as the earlier treatments. I will let you know about that. And I might even get Jon to “blog” while I am in Charlotte. Otherwise, it could be a week before I write again.

The meals our Sunday School Class and neighbors have brought over have been so good. Bill and I are both gaining weight. A good thing for him, but not for me.
God Bless you all.

Wednesday, October 3, 2007

October 3rd- Big Day at the Cancer Center

This was our first time in the Cardinal Bernadine Cancer Center. What a beautiful facility. Loyola University Medical Center is almost 60 years old. But their cancer center (a separate building) is spectacular. We kind of bypassed that building in September when we went straight to the hospital.
Bill’s bone marrow biopsy went well. Our hematologist/oncologist, Doctor Shafer, did the procedure. No results yet, you will have to wait until Friday night.
Bill’s blood counts have improved again. His red cells are “normal” at 15 and his white cells have stopped multiplying so rapidly and have lowered to 12,500. It was immediately evident that he was feeling better when he chose to walk up the steps and not take the elevator at the Cancer Center. I was pleasantly surprised.
On our way home, we pass Bill’s office. I again knew he was feeling better when he wanted to stop in and visit. We spent an hour “making the rounds”, and it was so good for his well being to see everyone. If you are reading this, and you work in Bill’s office, click onto “Comments” below and leave a message telling others how he looks and sounds. He was having such a good day. His first day outside for any length of time since August.
After the results are known from the BMB they will schedule the Consolidation round of chemo. The doctors say maybe Tuesday of next week. It will be 3 days of just one chemo drug, Cytarabine (Ara-C) every other day at the hospital, staying overnight the day of the chemo, but going home in between treatments. He will NOT be given the clinical trial drug, Mylotarg, that caused an allergic reaction.
Bill had an eventful morning. He has slept all afternoon, ate dinner, and is back in bed for the evening. I don’t know if he will even make it for the first inning of the Cubs game tonight.
It was so good to see him have a good day, and hopefully a good weekend, before the chemo starts again.

“The journey of healing is traveled one step at a time.” We are taking our “baby steps”, one step at a time. Thank you for holding us up in your prayers. Every little bit helps.

Tuesday, October 2, 2007

October 2nd- Shhhh....Bill is sleeping

You guys would love Bill’s life right now.
Sleeps 10 hrs at night. Gets up for breakfast.
Takes a morning nap. Eats lunch. Opens the mail.
Takes an afternoon nap. Goes for a walk around the block (because Nurse Nancy makes him walk.)
Has dinner, watches sports. 9pm is bedtime, and the cycle begins again.

It’s really not all that bad, there is some “wake time”. And, I am glad he can sleep. His body is doing a great job making blood. Some of you have asked about his blood work.
Remember normal is the following:
White cells- 3,000-7,000 HGB- 12-18 gm/dl Platelets- 150,000-400,000

The day we left the hospital (Friday) Bill’s counts were:
White cells- 12,600 HGB- 7.9 Platelets- 50,000

Monday, a Home Health Care Nurse came to draw blood. The results:
White cells- 24,000 HGB- 11.2 Platelets- 110,000

The nurse would have come back that afternoon to give him blood if his red cells or platelets had been low. But as you can see… Bill is doing GREAT.
I was concerned about the high white cell count. But, the doctor says, the Neuprogen shots were given to increase the Neutrophil (good white cell) count, and that is hopefully the good cells multiplying to control the mutated white cells.

Wednesday morning we go back to Loyola Medical Center for his third Bone Marrow Biopsy. Those results will tell us what is happening in his bone marrow and what our next step will be. As soon as I know the results, I will send out a blog.

We pray this day for Bill/Dad to have comfort during the biopsy, and for the best results possible under the circumstances.

A verse from Exodus 33:14 " .....’My Presence will go with you, and I will give you rest.’” says it all. Thank you Lynn for that card. Very timely.