Bobaloo Musings

Update on my dad

2005-09-24T08:20:00.000-05:00

Robert Hunter passed away at 5:50 a.m. on September 24th.

An update on my dad

2005-09-23T16:03:00.000-05:00

This is Matt.

Thursday morning my dad seemed groggy and kind of 'out of it'. We assumed it was a mixture of him being tired and the medication. We took him to his noon appointment with Dr. Popa. When he got home at 2 we put him in his chair so he could rest. He's been sleeping ever since minus about 30 minutes of grogginess last night.

The nurse visited this morning and has told us that his symptoms (sleeping, breathing pattern, blood results from Thursday, heart rate, clammy skin) all indicate that he's entered a comatose state and that it will only be a few more days.

Our entire family has been notified. My in-laws are on their way to Omaha to help and a number of people have been kind to ask what they can do to help.

My mom asks that you keep him in your prayers. I'll update this when there's something new to report.

Matt Hunter

Now that most of my family knows.......

2005-09-16T15:30:00.000-05:00

I can share with everyone else. Charlotte and I have a heavy decision to make in the next couple of days. We lost the war some time ago and have been fighting the battles since then. We know the disease is fatal and we were trying to extend the length of life and its quality. But there isn't much quality of life if you spend it in the hospital. In addition if every treatment leaves you with more issues is it worth it? That is something a person must decide. A task Char and I have to decide. The doctor has told us that there is no hope and chemo will do more harm than good. We are in papative care currently and intend to stay there awhile with hospice a posibility in the near future. What that near future is we don't know but we do know we are on God's time now. Keep us in your prayers as we make this decision. God will help us and will determine my death date. We will live each day as a joy together that God has given me.

Two other items of interest. We moved to Omaha at least through the winter or the inevitable happens. Secondly we stopped phone service and did not transfer it to Omaha.

Love Bob

Another long week

2005-09-12T07:27:00.000-05:00

I don't know what I have shared regarding my condition to date so I will recap a few things that you may already know about. First it takes me a long time to type and my writing is often incorrect and needs redone. My hands tremble all the time and I am concerned about some of my decisions mentally. I have to rethink my stock trades, for example. I am only looking at trading ETF's :)

I am in the hospital again. My legs began seeping fluid Saturday night as they are very swollen and my three doctors are in disagreement as to what course of action to take. I seriously suspect they will suggest home health care followed up with hospice. We should know more by the end of today.

Charlotte agrees that prayer is the answer and we are in charge of our care. The Doctors need wisdom in their decisions and we ask for His guidance for them.

Labor Day Weekend

2005-09-05T15:23:00.000-05:00

It is the real me just like the real Coke but the Coke doesn't taste that well.

The water retention isn't being resolved and the water pills don't seem to be working. Tuesday I see Dr. Popa for an idea of what to do. It was suggested by my radiation doctor that hospitalization would be the best idea. The doctors would 'tap' my leg and drain it every day :}

Seriously, the doctors would hook up an IV and insure the drug is in the blood stream as needed.

The blog will be updated by Tuesday evening either by myself or someone in the family.

Keep us in your prayers.

Love:
Bob and Char

Treatment

2005-09-03T21:36:00.000-05:00

I received radiation today on my neck and will receive further treatments of radiation on Sunday and Monday. The radiation will run through the labor day weekend. At this point in time I have numbness on the left side from the bottom of my neck to the top of my ear. My left ankle still hurts. During the radiation there is excrutiating pain in my left hip. I managed to barely make it. They said the radiation would only last another 5 to 10 seconds but they probably lied to me as to how long it would last because it seemed longer. It was more than 5 more seconds. I take morphine 15 minutes before the radiation and then I take another 5ml before they actually start so that I'm covered through the treatment. Obviously that makes me drunk-like which is why i'm late on the blog.

My calves and feet swell so much fingerprint marks last for a long time. I can't sleep laying down. Currently I 'sleep' in my office chair which gives me some relief. They're doubling my water pill to help me lose water and reduce the swelling. I'm going to stop the Gatorade intake as well.

I'm getting an apartment in Omaha this week so that I don't have to climb the stairs. I'll explain further this week. I plan to take the grandkids fishing on Monday.

Please keep me in your prayers.

This was dictated to Matt by Bob. Bob hopes to update the blog later this week himself.

Update coming tomorrow

2005-09-02T21:33:00.000-05:00

This is matt. Dad will update the blog on Saturday.

Belated update

2005-08-31T13:40:00.000-05:00

Well I believe I have had three Velcade treatments since I last upgraded my blog. The one on the 22nd made me slightly ill but it was an improvement over the one on the 19th. I wanted to update the blog but the computer in the hospital's library was shut down. The week of the 22nd was mostly spent sleeping and I did not get around to updating. I know the 26th I tried to update the blog but was unable to stay awake. I was on medication and had trouble sleeping nights so the combination of drugs and lack of sleep made me unable to do much. Char basically 'poured' me into the car after the third treatment.

The VA hooked me up with a social worker who covered a number of items to consider. For one, I am being encouraged to complete an advanced directive. I also was given some ideas of things to get the VA to give me. I now have a walker (I have been falling too much with the cane and it even has a seat for resting), a toilet seat booster, a port-a-pot and a couple of hand gadgets to help me since bending over is difficult.

I am currently dealing with three basic issues. I have bloated from the waist down like you won’t believe! If I were to buy shoes I would have to go into a size 12w and my waist is slightly less than a size 46. My ankles seem to have difficulty bending properly at times and my hips puff out. Weight is up to 250.

The second issue is the tumor on my left hip. I continue to get pain running from my hip down through the thigh on a random basis. It is similar to what happen prior to the treatment on my right hip. This is not good. My right hip is still not functional and I can’t afford two hips messed up. (I have a physical therapy consult scheduled for the leg)

Lastly my thyroid gland in my left neck is quite large. It is beginning to press out against my throat and I can feel it pressing against the area around it.

I apologize if there are any formatting issues. I wrote in Word off line and then pasted it into notepad.

Praise God it is August 31! Every day is a great day.

I will update the blog on Sept 2. I promise....

Bob

I will have a full update on Wednesday

2005-08-30T09:19:00.000-05:00

There is a lot to tell so I will update my blog on Wednesday. Sorry but I have been a little tired or otherwise tied up and didn't get the blog updated. Remember I can't do it from home.

Cheers

Bob

First VA dose of Velcade

2005-08-19T17:15:00.000-05:00

Well things went well today. Another is scheduled for next Monday, Friday and then the following Monday. I will receive this cycle at the VA and then get another MRI at Methodist. Dr. Popa will then be able to do a comparison to see if anything is happening. If not, we will discuss something else.

Interestingly they feed you as well. I was offered breakfast and lunch. I took them up on lunch and had spaghetti, salad, roll, mixed veggies and fruit cocktail. Quite a bit for lunch. Met with a social worker who went over some of the benefits and discussed stress and other issues dealing with a decrease in physical abilities and interactions with family. I was given a new cane. I could have received a walker but I thought that would be a bit much at this time. Since I don't have a toilet downstairs I was also offered a portable toilet. So far my reaction to the drug has been satisfactory and I hope it continues that way. I have also been scheduled for a rehabilitation review for my right leg which is still giving me problems. The pain continues and my pain relieve is being doubled from 25 to 50 mcg duragesic patches. I personally preferred the morphine time release pill and if I have to go any higher I am going to ask to go back on them. The doctor stressed that while there is always hope but that 'quality of life' doesn't mean for me to go around in any pain so I should take advantage of the drugs available. I guess he has a point but in the back of my mind I can't help but worry that the more pain the worse the disease. Well we will press forward.

Thank all of you for your prayers and we ask for your continued support.

We have decided to get rid of Max so if you know of anyone let me know.

Thanks
Bob

Monday visit

2005-08-15T16:02:00.000-05:00

Saw the doctor today to see how my symptoms were going. She said pretty much as expected and that a lot of people have problems initially with Velcade. Generally the response is to find the dose amount that is correct for the individual. The protocal is a 21 day protocal which I misunderstood. The entire cycle is 21 days so on the 22 day you start over. You don't get 21 days after the last dose. I think the cycle is 1, 4, 8, 11 and 22 start with 1 again.

For those who want to search the medical dictionaries my last MRI said in ending:

There is more extensive metastatic marrow infiltration in the right acetabular region. More extensive extraosseous tumor in the right gluteal region. Central necrosis that occurred in the left gluteal soft tissue mass. Improved inguinal lymphadenopathy. Additionally, more cephalad imaging plane shows an extensive left spoas tumor muscle metastatis infiltrating extensively, as described, over an 11cm craniocaudal length on the left.

My next appointment is Friday when I will get another dose of Velcade. I will try to post something then. Until then we continue to pray and trust in Him.

By the way, read Lev: 13 and 14. Kind of interesting stuff.

God bless
Bob

One Very Tough Week

2005-08-12T19:15:00.000-05:00

Monday I recieved a half of dose of Velcade because of poor response to earlier doses. Wednesday I visited the VA and discussed getting Velcade from them. They said that would not be a problem and they will evaluate his records and talk to Dr. Biermann at UMNC. Dr. Popa is in agreement about moving over there although we are not so sure, but we will probably go to the VA if they continue with the Velcade. The Doctors on loan at the VA are from UNMC.

Today I am bloated from gas and water. I have medicine for both and hopefully over the weekend this will lessen the issues. I also got a blood transfusion today and will see Dr. Popa again on Monday. I plan on spending the weekend sleeping as I did all day Thursday. I recieved no Velcade today but I am scheduled to get it next Friday.

God remains great and we continue to trust in him and look to healing these small issues. He is working on the cancer, surely the water and gas is not too hard for him to handle.

Bob

Too tired to post

2005-08-11T21:00:00.000-05:00

I slept all day and am very tired. I will update this on Friday. The VA was positive for the medicines. Lastly, Go Broncos!

-- P.S. Matt typed this in for me.

Just a quick note

2005-08-10T14:06:00.000-05:00

Visited with the VA today and they will do the Velcade for me. I will have a long post on Thursday explaining it all but as Char and I knew, God brought it all together for us and we are so very grateful. Looking forward to explaining more then.

Cheers
Bob

Wonderful reports and progress

2005-08-05T16:32:00.000-05:00

What can I say. The cat scans came back with little evidence of the cancer. A left neck lymph node has it and there is a tumor by the right iliac bone (where it was radiated the last couple of weeks) but other than that the scans came back pretty clean. Now both the doctor and I think the cat scan missed at least one tumor. The left side of my waist line, in the area of the back, had a tumor there before and I can feel sensations from that area so we both think the CAT just missed it. None the less the results are great and we feel very uplifted by the information. If you remember they had me dead a couple of weeks ago. Again we can only thank GOD for all that is going on in my body. In fact while talking with the doctor about the CAT scans I said, 'Thank you Jesus.' and she nodded her head in agreement.

I took another dose of the Velcade today and we will see how the weekend goes. I am feeling positive and think we will be able to weather it well. Last time I was coming off two weeks of radiation so that probably affected my reaction as well.

We remain humble for the gifts He continues to give us. He is merciful and just. I received a card this week reminding me that there is really only one physician and that is Jesus. Trust in him we will.

Bob

It has been a tough couple of days

2005-08-03T07:47:00.000-05:00

This new drug really kicked me this time and I have been sick since Saturday. I went in on Monday and Tuesday for IV fluids and have been drinking Gatorade to try to raise my fluid levels. The doctor decided not to give me another dose until Friday to give me a chance to recover. On Monday I had a complete CAT of the neck, chest and lower body to give us a baseline and see where we are with the cancer. I may not be able to update this blog until sometime next week though because I won't have internet access until probably next Monday.

Other than being sick, however, everything else is fine. God has and continues to be so good to us and we are thankful for each day he gives us together.

Cheers.
Bob

A long week and a busy one really

2005-07-29T20:28:00.000-05:00

The kids (Matt and Kate and gang) have been gone all week. I hung around their house everyday because I had radiation daily. The right leg seems to be coming around ok and I am able to drive an automatic. Some strength has returned to the leg as well but I am not ready to tackle a standard shift quite yet I think. Today was the last day for radiation.

On thursday I met with a doctor at the VA who will be my primary care physician. Apparently you can't be seen by any clinic unless your primary care provider requests it (dental, optometry, etc). He ordered a referral for me to the oncology clinic. I am going to talk to them about administering the Velcade (bortezomib) which has been found useful in treatment for multiple myeloma (a cancer of the bone marrow). The drawback to that is I would have to be treated by the VA rather than Dr. Popa but I could consult with her periodically.

Today I began the Velcade treatment. I have to sign a financial responsibility form that I will pay for the drug. We are going to make a claim against the insurance company and when they reject it the pharmaceutical company will appeal for me. In conjunction with this I am asking the company to waive the cost of the drug. So I have 4 avenues I am pursuing
1. Get the insurance company to pay
2. Get the drug company to pay
3. Get the VA to adminster the drug
4. I pay out of pocket the $960 each time the drug is administered

The drug will be given on days 1, 4, 8, and 11 then I will rest for 21 days and begin the cycle again. This will continue as long as cancer remission is evidenced. Next week I will take a couple of scans to establish a baseline and see how the treatment goes from there. That will give us a comparison and who knows how long it will be successful?

Well that is about all. Pray that God continues to grant me time as He has been pushing this cancer back for me. In addition we know He will provide the funding needed from one of the sources mentioned above. He is just and righteous. I thank Him daily for each day I am able to spend with the family.

See ya

Bob

The Velcade search :)

2005-07-22T23:02:00.000-05:00

Well the best I can tell the VA hospital is not familiar with Velcade. I have to have a primary care provider assigned to be seen in any clinic and that will not happen until the 28th of July. The Oncology clinic is open on Wednesdays so I need to slip over and speak to them about the drug. I talked to the pharmacy at the VA and they said the drug needs to be on their formulary in order to get it. However, if an oncologist wants the drug it can be requested thru a process. The approval chances are low if it is not approved by the FDA for the disease being treated.

I did a search for clinical trials using Velcade and came up with 8 of them. I asked Dr. Popa to scan them and see if any look viable for me. Barring that Char and I will probably go with the Velcade 'out of pocket' treatments for now and and appeal to the insurance company for payment. I want to sit down with the doctor and plot out where we are with the cancer and what constitutes success with the Velcade. What and how frequent will we test for efficacy.

Additionally the radiation appears to be having a positive effect on the right leg and I am getting some movement in it. Five more doses to go. Next post will be Friday July 29th.

God is great and is the One who deserves the credit for this!

Bob

Sorry I will be posting on Friday

2005-07-21T19:27:00.000-05:00

No post today

Dr. Popa is speechless...P2

2005-07-19T15:13:00.000-05:00

On Monday Charlotte and I visited with Dr. Popa regarding further Chemo treatment in lieu of the recent MRI results. To say Dr. Popa is awe struck by the test results would be an understatement. She asked if she looked like a fool. She reminded us that not just she, but Dr. Bierman (UNMC oncologist specializing in Burkitts), were in total
agreement regarding my prognosis. Dr. Popa said she 'never expected to see me again' because I was going to deteriorate so quickly. She just returned from 3 weeks in Romania. The doctor is taken back not only by the results from the Lumbar region but the incredible reversal of the disease. She never believed that the Thoracic area tumors would be 'smaller' in size with some of them even gone now. Additionally the
bone marrow element regeneration is compelling. She wanted to know how many times a day we prayed and what our secret was. We told her '...It is no secret what God can do...'

We have been on the prayer lists of many churches and persons and we thank all of of you for your support and ask for your continued prayers.
As for treatment, I will be receiving 10 dosages of radiation for my iliac bone area in hopes of pushing back the tumor bothering my right leg. Chemo is still up in the air for now.

I have a VA Agent Orange appointment scheduled for Wednesday and I will be trying to get assigned a primary care provider there. Once that is done, I can receive care from the hospital. I will be looking into the possibility of Velcade. This is a drug that seems to have good results in holding back the spread of some cancers. The problem is that Tricare won't pay for it. It is my understanding that they will pay for the administration of the drug but not the $960 dosage cost. The treatment is 4 doses over two weeks every 21 days. So roughly a cost of $4000 every month. If I don't come up with the drug in the next week or so there are a couple of other drug options available to look at.

Well that is about all for now. I will update the Blog Thursday. We will be in Kansas City this weekend.
Cheers!
Bob

Dr. Popa is speechless...

2005-07-18T16:39:00.000-05:00

In fairness I need to consider this next post carefully. My conversation with Dr. Popa served only to reinforce my faith. She doesn't know what to say about me being in her office looking to continue treatment. One of her first questions was "How many times a day do you pray?"

I will update the blog on Tuesday.

Bob

Exciting Turn of Events! God is great!!

2005-07-15T11:03:00.000-05:00

On Thursday MRIs were taken of the lumbar and thoracic spine areas. Yesterday the doctor reviewed the results with me. The last MRI was in October of 2004 so comparisons were made against that date's results rather than anything in May.

Quote from the thoracic spine evaluation.... "There is significant improvement in the appearance of the thoracic spine since the previous examination...." The remaining information notes that while the disease is present (abnormal pathology at the position of the T12 spinous process), it is modest in comparison with October's. Further evaluation via a CT scan is recommended.

Quote from the lumbar spine evaluation.... "Multifocal lesions demonstrated October 14, 2004 are again documented but all have decreased in size and at L2 the lesions have disappeared. There is no evidence for new significant pathology in the lumbar spine." The remaining information notes that there is a large soft tissue component involving the right iliac bone extending into the pelvis.

What does this mean? It means I still have cancer and it is terminal. What it also means is that I am NOT ready for Hospice. Most importantly it means God is answering our prayers!!!!! We have prayed everyday that God grant me additional days as he has done for many others so many times before.

About the 23rd of May I was told I was terminal with 1.5 to 2 months to live. We are rapidly approaching the 2 month period and I have some issues with the tumors affecting my 'quality of life' but I am probably NOT going to die in the next week or two from the cancer!!! Do not confuse the grace of God with doctor error. Two oncologists, one a specialist in Lympoma from UNMC, concurred that the tests in May indicted little time and no hope left. When asked about going back to Ohio for visitation I was told "Sooner better than later" because the cancer was moving rapidly. I was turned over to hospice to die 'peacefully'.

Where do I go from here????

First, I will receive radiation treatment today for the tumor pressing on the nerves mentioned above. This should help with the right leg pain and movement. I currently do not have control over all my right leg muscles. Secondly I will meet on Monday with Dr. Popa to discuss receiving chemo-therapy again. I will not be pursuing clinical trials at this time. Dr. Hartman noted, with a grin, that he had drugs I haven't heard of yet. In a nutshell, I am going to re-enter chemo treatment for the disease.

Be sure not to jump to conclusions. We are not going for a 'cure' as the disease in my case appears incurable. The cancer will probably win one day but it is the one day that we will be working on. We, the doctors and I, are going to focus on quality and extension of life and I can accept dying of cancer in about 15-20 years from now :) As before my days are numbered only by God and his hand is on this whole situation. Charlotte and I thank God daily for each day He grants us and we also thank Him for those of you who are supporting us. May God bless you.

Next update Monday the 18th :)

Bob

Five possible clinical trials

2005-07-08T19:43:00.000-05:00

NEW:
I just had a conversation with Dr. Hartman (senior partner of the oncology clinic where I am being seen). We discussed my current situation and where I am headed. He is going to keep me in the hospital and will be running some tests to see why my mobility issue popped up. He wants to treat it now and look at trials later. His slant is to restart treatment for my current cancer and work on 1. Quality of life and 2. Extension of time issues. I think he, Charlotte and I are in agreement on this. Once I get the information on the clinical trials he is going to look at them and see if he thinks I should pursue them further. He doesn't seem to be a fan of trials, for a number of reasons, and doesn't like having his patients leave his care. He is a guy who doesn't mess around and I like his straight forward approach. I will keep you updated.

Well it looks like we are going to go with the morphine pills to control the pain in the legs from the tumors. In addition, I will probably get an MRI next week to see where and how big the tumors are now. That information will dictate our next moves (radiation, steroid, etc). In addition I will be contacting the VA about Velcade or other options over there.

As for clinical trials, Dr. Bierman found 5 to start with. Two are in Chicago, one in Washington State, one in St Louis and one at Case Western Reserve in Cleveland. I will be attempting to contact them on Monday to see what the requirements of participation are.

I will update on Tuesday after calling the 5 areas.

Cheers!

Bob

Tough day

2005-07-07T22:58:00.000-05:00

Events of the day led me to an earlier posting than I had first planned.

The last couple of days my right leg has been bothering me at night. A cramp like ache develops, about 8-10 pm at night, in the calf or thigh muscle which seems to come an go. A tingly sensation and a sense of circultion loss was felt which is what led to the blood clot check the prior Tuesday. After 'walking it out' in the morning, the day usually goes pretty well however normal walking has been getting more difficult. This morning the pain became unbearable and even centered at times in the kneecap. About 4 am this morning, while climbing the stairs to the bedroom, I found my right leg literally dropping out from under me. The kneecap the center of great pain. I spent an hour or so on the floor, with Charlotte by my side, attempting to find some way to stop a major cramping and pain assault. Heating pad, elevation, ibuprofren, massage........ nothing seemed to work!

I crawled in agony to the living room couch. I couldn't stand or kneel and no position seemed to soothe the leg. Finally I spoke with the staff at the oncology clinic in an attempt to find some method of relief. While I had morphine and oxycodone in the house, I didn't want to take a chance mixing too many pain relievers without medical advice first. I was directed to take both the morphine and oxycodone and see how that helped. Additionally, Charlotte and I noticed my right knee and foot had a swollen and reddish appearance. We decided to go into the hospital.

After visiting with doctors and running a few simple movement tests of the right leg, it is believed that tumors have placed pressure upon some nerves affecting the right leg and various muscles. I am currently in the hospital and am receiving a morphine drip which seems to go a long ways in easing the pain. On Friday we will discuss a number of ideas to include a 'take home morphine drip' application, possible steroid or other chemical injections near the tumor/nerve contacts or even a pill type morphine application. I will also hopefully get an update on the clinical trial search which will impact how we proceed from here. At this time I must be careful not to take something that would disqualify me from a trial.

I will update the blog on Friday as to our decision. Until then remember that God is good. He got me through the day with some very real choices for a solution to the leg pain.

Clinical trials possible?

2005-07-03T20:27:00.000-05:00

Well it has been an interesting week and I am learning about the topic of Clinical Trials.

Initially, Dr. Bierman suggested I take four doses of Velcade in an attempt to slow down my cancer spread. Velcade has been shown to increase the life span (by 2-3 months) of Multiple Myeloma (sic) patients. Multiple Myeloma is an incurable cancer. Tricare nixed that idea and the drug is about $4,000 a dose. I decided to select this option as a possible third choice of action. There is no evidence that this drug will work with Lymphoma. It is merely a shot in the dark. In addition, taking this drug could prevent me from taking any other course of action as described below.

On Friday I visited with Dr. Bierman at UNMC about a phase 1 clinical trial. Essentially it is an attempt to determine the highest safe dose of a chemical that can be given to persons with non-Hodgkin's lymphoma (in this case). There is no guarantee that you will get the dose required to eliminate the cancer, if the specific drug even has that capability. You are extensively tested prior to and after administration of the drug. If it is found that the dose received was too little, there is no promise a followup dosage will be administered. In reviewing the consent form it appears that all costs associated with participating in the study would be picked up by the drug company. Participating in this trial is my second choice. It may be that participating in this trial would prevent me from going with my second choice, a phase 2 trial.

In talking with the DOD (Department of Defense) cancer trial specialist, it was suggested that I look for a phase 2 trial. Basically a phase 2 trial is conducted once a treatment is settled upon (dose, time, number of administrations, etc) but before a 'test' group is used for comparison purposes. This means a subject receives what is believed to be a successful treatment. The DOD person said I could go anywhere in the country for the trial and they would fund most if not all of the cost. Dr. Bierman is going to investigate if any phase 2 trials are available. There are usually a number of restrictions regarding when your last radiation, chemo, longevity, disease recurrance, etc happen so we will have to see what is available. I will be in touch with his office by this next Thursday.

On the upside, while Dr. Bierman re-emphasized his belief my disease is incurable, he said not to give any validity to the first life expectancy guess of 1.5 to 2 months. He said I looked very good and seem to be doing well so it is hard to say how much longer I might have. The doctor said that although the test results indicated the disease was on the move, when he first agreed that hospice was the best course, I am handling it very well and he no longer sees hospice as a valid choice at this time. He also noted that there are miracles all the time. In truth, except for the leg pain which I keep medicated for I am really doing very well.
Charlotte and I have said from the beginning that God knows the date of my death and that is who we put our trust in. Until that day, we will move forward with normal lives only a little more focused on our love for each other, our family and our friends. We will continue to seek out alternatives that God puts before us and thank him daily for the day he has given us. That God gives me one more day is a blessing that I treasure!

God be with you. My next update will be Friday, July 8th unless something special pops up.
Bob

Another busy week

2005-06-24T21:04:00.000-05:00

Following the wonderful assistance I received last weekend I went out on Tuesday and bought some wood and am getting ready to build :) I want to build a headboard for our main bedroom queen sized bed as well as a small porch and back steps leading from the kitchen. Also on Tuesday I went to Bible study as well as seeing a CPA about my taxes for the upcoming year. He suggested I relook at one item on last year's taxes. Oooppss! On Wednesday Char picked up her new car, a Hyundai Elantra and seems to like it fairly well. Thursday I saw an attorney (he believes most of my stuff is in pretty good order) and went into Omaha for a blood test and a procrit shot.

Tricare turned down my request for Velcade (which I expected since it isn't FDA approved for Lymphoma) but my case manager said they would pay for anything else associated with the delivery of the drug. I talked to the UNMC case manager and Dr. Popa and will visit further next week about it. As far as I can tell all I need to do is get the drugs paid and we should be able to move forward. There are a number of ways I will explore to get that accomplished.

After some very circular discussion with the VA about medical records it looks like they will approve 100% disability. Bummer that this is the result although the benefits will be useful.

Well, as you should know I am in Moline, Illinois this weekend to visit with some friends from my military days. It should be a good weekend. Next weekend I am going camping with Matt, Kate and the boys so the blog won't be updated until July 5th. Have a great couple of weeks and I will see you all later.

Jeremiah 29:11 says "For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end." God harbors no evil towards us and wishes all to come to him. If you died tonight, where would you spend tomorrow?

Love
Bob

A restful Sunday after a full weekend

2005-06-19T12:30:00.000-05:00

Hello all:

As I noted earlier the end of the week has been very hectic. I didn't sign up for hospice yet because I can't receive treatment while on hospice. In addition the hospice folks thought it could wait. I do look pretty good all things considered.

On Friday I had an appointment with Dr. Popa and we discussed my visit with Dr. Bierman. My blood counts are better then Dr. Popa anticipated. My white cells are at 7000 (smack in the middle of average) and my red cells are normal. My hemaglobin is low so I will continue to eat foods that will boost them. She said if the Velcade effort failed she might have some ideas for life extending efforts. Note they are meant to 'slow' the disease spread not cure it. I also heard on Friday that the insurance company has sent our request to peer review. We also bought a Hyundai Elantra. Yes I know about its former reputation but it is rated fairly well on Consumer Guide and it does come with a nice group of features. It is a 5 speed basic get what comes with it vehicle. Check it out on the web and you will see it looks like a good buy.

On Saturday a blessing rained on our house. Because this is an open blog I won't mention names but about 8 folks from work (or husband/friend of a Mutual person) joined us. A neighbor, my son and daughter and my sister-in-law in attacking a number of jobs around the house. A chimney came down (with very slight damage to the air conditioner with the first brick) and the hole was filled after concrete was poured to make a cap a couple feet down. Some fire brick was save to build planters as well as some concrete bricks for landscaping efforts. The wood burning furnace, after great effort, was brought up from the basement and most of the duct work taken out. I smartly waited, after breaking a basement step taking it down, for the furnace's removal to consider the damage to the steps. However I only have two to replace now :) It was a MAJOR chore getting that heavy thing out. We dug up the septic access, cut the lawn and field, trimmed around the place, cut down a number of scrub trees in the backyard and added dirt by the foundation where a gutter drain hose was pulled up. The fireplace chimney cap area was re-shingled and the bricks around the foundation of the house were painted to match the siding (where it was formerly red). About 2:00 we had lunch (brought by our friends from work) and shortly after called it a day. The food was outstanding based on comments from the diners and the lasagna (one of my two favorite dishes) to die for. It was a tearful experience for Charlotte and I when it was over. I was overwhelmed!

God is good and I thank Him so very much for these fine people! I love you guys.

My next update will be next Friday the 24th from Moline, Ill. We are driving there to meet some friends from Ohio. We were stationed with them a number of years and they are really the only ones we still have contact with.

Bob

Sorry about the update being late

2005-06-18T06:56:00.000-05:00

So very much is going on this weekend. I will give a full update on Sunday the 19th. :)

Thanks
Bob

Been to UNMC

2005-06-13T14:54:00.000-05:00

I was seen by Dr. Bierman and UNMC today and he really didn't give us much hope. There is a drug that I could take, Bortezomib (aka Velcade), that might prolong the inevitable for a month or two. It hasn't been approved by the FDA for Burkitt's lymphoma and it is iffy that the inusrance company will ok it. The doses (4) are about $1,100 apiece and I can afford that but the total cost would be higher. One web site estimates $24,000 so if Tricare won't approve it I would have to decide if the extra month or so is worth the cost. Personally I am inclined not to do it 'out of pocket' since it isn't a hope for a cure but rather a hope for an extension of time. God can give that to me without the drug if he wishes. I am unclear on what Dr. Bierman meant by the need to do the drug as soon as possible except that Dr. Popa may have been right on with her time prognosis of 1-2 months and he thinks the spread needs to be stopped sooner rather than later. Ever notice how that phrase is used more and more now? ;) Sooner rather than later.....

There is also a clinical trial that will begin the end of the month that I might be eligible for. That would be paid with DOD money rather than Tricare money so it is worth a shot and I would take it if offered.

Well that is all for now I guess. I will update the post on Friday of this week.

Cheers and God be praised.

Bob

Nothing new going on here

2005-06-08T14:06:00.000-05:00

Just treading water. The hospice folks are coming out this Friday. I guess there was some confusion about them coming out Tuesday. Other than that all is fine here in mudville :) Charlotte and I visited with the pastor Tuesday as well as a funeral home and a cemetary. We are continuing to pray that God grants me more years on this earth. I am in no hurry to leave my wife and family but He is righteous and always just in his actions. I appreciate all who continue to join us in prayer in the name of our saviour Jesus Christ and you should know that I feel very good physically and mentally. My faith is in Him as well as my trust and it will carry Charlotte and I through this time as it did David as told in 2 Samuel 22.

Cheers
Bob

Marvelous Memorial day

2005-05-31T19:21:00.000-05:00

I can't say enough about the effort of my cousin Gay. She put together a 'picnic' at my mother's house in Ohio, on a 3 day notice, where about 45-50 people showed up. It was a Carico reunion and it was Outstanding. My cousin Roger even flew in from Florida for the 3 hour party. Diane's husband Clyde gave the prayer and we had much to eat. Gay, her husband Dick, and I have a secret about the tent but we decided to only tell our great grandchildren so I won't share it here :) Thank you all who came. It was outstanding and I enjoyed seeing people I hadn't seen in many years.

Love you all
Bob

A rough 24 hours

2005-05-26T21:36:00.000-05:00

Certaily a rough 24 hours for my family for sure :)

Today I had a dose of radiation on the left hip. The intent is to try and jolt the tumors and keep them from growing more. This is a temporary effort so that I can visit my mother and relatives for a week. In addition, the doctor is giving me 3 units of red blood cells and I will take neupogene for about a week after I get out. These should help boost my white and red blood cells. On Friday I will be released. I am going to Ohio Sunday for a week to visit relatives and should return the 4th of June. Charlotte will go with me to ensure nothing happens. I will keep the blog updated as events warrant it. Charlotte will probably return to work on the 6th.

I had a number of visitors today, in addition to my children, and I really appreciate all of you taking the time to stop by. It is a joy to realize how many friends one really has!

In John 17 Jesus prays for his disciples. One verse, the 15th, is notable in that Jesus doesn't pray to keep his disciples from experiencing death but rather that the disciples be protected from evil. It is the evil of the world that we should fear and defend against. Death is only a transtion for the saved from this world into what God has has promised us through his son. Eternal life.

God be with you all.

Bob

Well we can erase the word tentative...

2005-05-25T22:19:00.000-05:00

Any healing will be totally God's from this point forward. My chemo was disconnected at 3:00 pm and I am being referred to social services for hospice and end of life issues. There will be no bone marrow transplant. Charlotte and I plan on visiting Ohio the first week of June and will be out at the house after that. Charlotte will be taking FMLA in order to care for me at home. Some people have suggested they can help with the chimney and that will be my first item for completion. I will also call someone to replace the garage doors. I will update again on Thursday but I am a little tired tonight. God is supreme and always in control.

Cheers
Bob

Follow-up to tentative post

2005-05-24T18:14:00.000-05:00

The doctor has visited and she had a smile on her face. That is always a good sign! The cancer is not spreading. More correctly, the lymph node in the neck is a little larger and the tumors in the belt line are larger than initially noted. Praise God that the cancer has not spread. It is only where we knew it was before.

As many of you know, cancer reacts differently to different chemicals so it is possible that the areas noted will respond to the second round of chemo. Methotrexate is a powerful drug so we will see how it goes. I am going to get Round 1 of protocal B. I also had a biopsy done of one of the hip tumors. We expect results in a couple of days and will deal with what they are later. It may be that we need to change the protocal. The requirement is that the tumors MUST be beaten to continue with the bone marrow option. Three candidates have been found that UNMC would like to pursue further. I will update this blog not later than friday but certainly when I hear about the results of the biopsy.

Read Romans 6:23

Bob

Some tentative bad news

2005-05-23T20:13:00.000-05:00

Tentative is the operative word here. Yesterday my left hip developed another area of sensitivity to the touch. Additionally, I took off the 50Mcg Fantynal patch and put a 100 one on. The doctor and I also discussed my lymph node getting larger in my left neck. Together these changes suggest the Chemo is NOT working this round. I underwent an MRI and a CAT scan today but have not talked with the doctor about the results. In the morning I go into minor surgery and have a biopsy on the 'suspected' tumor. From the beginning we took for granted the growth was a tumor but it could be a hematoma or some other type of growth. IF the growth is a tumor, and we are unable to eradicate it, there will be no bone marrow transplant. Treatment will be stopped and I will have about 2 months to enjoy this world. Prayer works. While it has been commented that I am handling this situation well, death is NOT my first choice. However God is supreme and righteous. Regardless of the outcome it will be His soverign decision and with his approval. God has blessed me for 57 years and He can bless me for many more years. Psalms 105:2-3 Bless the Lord, o my soul, and forget all his benefits: Who forgives all your inequities and heals all you diseases.

God be with you
Bob

Still too low for more treatments

2005-05-20T13:12:00.000-05:00

Today my counts were still too low. On Monday we will be checked again. The nurse said to show up with my bags packed and ready for admittance. The white count is 2.5 and the red is 10 so we will see. I will update Monday.

Bob

Blood counts too low for chemo

2005-05-17T14:16:00.000-05:00

I was lying here in the hospital bed thinking what a great view I had. I can look east, down Dodge street from this 6th floor room, and watch the traffic and stores. It is really nice and I have always enjoyed this side of the hospital when I was fortunate to get it. However, Romans 8:28 says that "..we know that all things work together for good to them that love God, to them who are the called according to his purpose." Thus there must be a reason I am being sent home :)

In order to get chemo one must 'recover' enough. My white blood count has dropped to 1.1 (4.0-13.0 is normal) and my red count is only 8.8 which is at the lowest end of normal. The doctor was surprised at the drop. I will receive the Rituxin today, in about an hour, and then go home tonight. After resting a couple of days and taking more neupogen I will return to the doctor office for blood tests and consultation on Thursday the 19th. If the counts are up the chemo will be started.

I will update the blog on the 19th.

What an outstanding day! Thank you Lord for allowing me to share it with my family!

Bob

Hospital admittance Tuesday May 17

2005-05-13T13:52:00.000-05:00

On monday I am to complete a couple of pulmonary/heart exams for the bone marrow transplant and then on tuesday I am scheduled to enter the hospital for Cycle B, Treatment 1. It is expected that this cycle will also take about 5 days. In general, don't hold me to the time frames, but I will start with rituximab and methotrexate the first two days. With check in sometime Tuesday, and getting everything ordered as well as the usual period of fluids required prior to starting the chemo, I will be lucky if the methotrexate drip begins before midnight Tuesday. The methotrexate will be 200 mg/m2 for 2 hours and then 800mg/m2 for the next 22 hours. The methotrexate will be allowed to work for another 12 hours and then Leucovorin will be administered every 6 hrs over the next 8 or until the methotrexate level falls to an acceptable level. Cytarabine will then be administered for 4 doses, 12 hours apart. Then I start taking neupogen until my white blood count rises above 1500. I added a link to the Nebraska Lymphoma Study Group for those who might be interested. As an aside, my hair is beginning to come out again. Bummer! It was looking pretty good! I will next update after I get into the hospital.

See you in church Sunday!

Bob

Status of Bone Marrow Transplant

2005-05-13T08:01:00.000-05:00

Heard yesterday from the Lied Transplant center that the initial database review yielded 1789 possible matches on 6 of 6 criteria. Apparently they do 6 and then scan for 10 on the results. To give you an idea of the magnitude of this, another person had only 4 matches. So, there will be testing for myself on a whole host of items. Remember this thing involves how strong my heart and other organs are to withstand a successful procedure. I even need a dental exam to ensure no infections or other issues might cause problems in that area. The search will be redone on the 1789 possibles looking for a good 10 of 10 criteria match. Then those persons need to be contacted and screened to ensure there is an interest in participating and they will have to have some medical examinations as well. This process can take a number of months, especially with summer here, and I may begin some of my testing as early as next Monday. In the meantime, I am sure the person who had 4 of 4 could use some prayer.

I will update later today after I go to the doctor's.

Cheers
Bob

Tuesday May 10

2005-05-10T14:58:00.000-05:00

My white blood cell count is up to 2700 so we are still working on the red cells and platelets. The nurse told me not to be playing with knives :) But I am not restricted anymore so that is a blessing. On Friday I go in for another blood test and a procrit shot. I will also stay on neupogen until then. If the counts are good, I am tentatively being scheduled back for the next in-patient chemo session next Tuesday. It will be the usual regimen and I will post again on Friday as to what the status is. Please note that I turned on the comment posting feature as well as the e-mail option for the posts. You may comment here if you wish and it can be read in a pop up box. Just click on the selection below this post.

A few days ago it was reported that a sarcophagus was found somewhere in the Middle East. The reporter made quite a thing about the beauty and richness of color used on the material. Here indeed was a very famous person who could afford such finery for burial. Of course the reporter noted that they had no idea who this person was or why they were famous. Fame is so fleeting and of no value beyond this earth. James 4:14 says that our life here (on earth) is a vapour that appeareth for a little time and then vanisheth away. While eternity is forever, how much time do we truly prepare for that period. Should we be focused on the shortest time, the period of the vapor, or where we shall be for eternity?

Cheers and thank you for reading my posts. God be with you.

Bob

Friday Chemo Day

2005-05-06T13:02:00.000-05:00

I went into the office today for my blood test and to get followup treatment. Today I was scheduled for Vincristine, Decadron, Procrit and Anzemet. Only the Vincristine is a cancer fighting drug while the others attempt to ameliorate the effects of the chemo. I had hoped to put some flowers out this weekend but my white blood cell count is 300 so I am being restricted. Normal is 4,500-10,000 white blood cells/mcl (cells per microliter). This means no church Sunday either. I will go in on Tuesday for another blood test to see if I am building up the cell count. As Charlotte noted, if I had been in the hospital they probably wouldn't let me out :)

A number of people have asked if they could do something for Charlotte and I during this period. I have tried to come up with some thoughts and have a few items I would like to accomplish this summer and would if it were not for the illness so volunteer labor would be appreciated. I have a free standing chimney I need to take down (I am taking out my wood burning furnace) if a couple of guys would like to help with that on a saturday. I need to replace both my garage doors on another saturday and could use assistance to do that.

Just like this weekend, I get restricted from working outside periodically. In addition during August and September I am "tentatively" scheduled to be in residence at UNMC for the bone marrow transplant so lawn work would be very helpful during these summer months. I figure about every third week should be more than enough. Then in late October perhaps a "leaf and walnut" day? We have a lot of walnuts to pick up each fall :( While I should be home in October, under the tentative plan, I will be restricted from yard work during the fall as well.

I have someone coming out next weekend to help with the lawn but other than that, pick a chore and month from my suggestions and e-mail me at nicatt1_2@yahoo.com if interested. I will work with you on the particular weekend. My next update will be Tuesday May 10th.

Psalms 30

Cheers
Bob

Sunday scheduled release from this trip

2005-04-29T06:57:00.000-05:00

I am scheduled to be released on Sunday to return home for a recovery period. Today I will receive some vincristine. After this 1 hour drip I will get a 24 hour drip of doxorubicin followed by a second 24 hour dose. This should result in a hospital release sometime Sunday afternoon. The web link noted below (and the link to the side) explains the drugs. I will take neupogene for a period of time and will probably enter the hospital for my second treatment in about 3 weeks.
http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Individualdrugs

Isaiah 26:3-4

Cheers
Bob

Better handle on time of treatment

2005-04-27T11:20:00.000-05:00

Talked with the doctor today and she wants to run a modified version of two cycles. This means 2 treatments * 2 cycles = 4 in-patient visits with recoups inbetween. We think this will take us into July. This will be similar to the mid-October to January treatment I previously had. After that the Bone Marrow Transplant will take about 4 months so it appears this will be about an 8-9 month journey.

God has given me this path to walk and I now pray for strength to walk it in a manner that brings him honor and glory. He is holy and just and whatever the outcome it is his hand that controls all.

Cheers!
Bob

Hospital Round 9

2005-04-27T06:44:00.000-05:00

As many of you know I am back in the hospital with Burkitts Lymphoma. Symptoms were intially noted in August of 2004 and diagnosis was made in October of 2004. Initial radiation and chemo was begun but the diagnosis was upgraded from large cell to Burkitts lymphoma. In that month the McGrath protocal was begun and a series of hospital stays ensued. In March of 2005 the PET and CAT scans as well as the bone marrow biopsy came back clean. There was some small suggestion of possible cancer in one neck lymph node. This node was the one that grew my neck from a 16.5 to 18 inch size and was the first sign of illness. A 22 day regimine of radiation of the lymph node was completed on Good Friday. Because thyroid and throat damage is standard in this administration of radiation a PET scan and followup was to me done in early May. This would give the throat and thyroid cells time to heal and help prevent a 'false positive' reading of cancer with the PET scan. (A PET scan keys in on fast growing cells and these are presumed to be possible cancer. The healing cells might be confused for cancer cells.)

About 28 March, only a month after the 'clean' reports received after the chemo, my left leg began to hurt. Having returned to work part time on 15 March I thought perhaps it was a reaction to not having sat at a desk for long periods. About 4 April I consulted my personal physician about another issue but mentioned my leg. He agreed it was probably the change in environment. I had begun full time work on 1 April. By 8 April the pain was no better and my right leg began to hurt as well. I decided a return visit to my oncologist was in order.

An MRI indicated a 1"x2" tumor on the left hip at about belt level had developed. In addition a suggestion of wide spread cancer in the bone marrow was presented. A followup CAT scan decreased the sense of wide spread cancer in that only on lymph node was found to be slightly oversized. A bone marrow biospsy confirmed the cancer's presence. A bone marrow transplant is now being pursued but we have to try to know this cancer and tumor down first. This week is the first week of a complete cycle of in-patient chemo. I should be out the 30th of May 1 for a 2-3 week recovery period. At the end of the recovery I will come back for another round. In the meantime a donor will be sought. No volunteers please. The process is pretty strict. All healthy siblings are tested first. If no matches are found the National and International donor databases are searched. The process may take 4 months or more. Until then we have to watch the cancer and keep it knocked down or out.

I will keep this blog posted rather than sending e-mails out periodically. Remember it is all in the hands of God!

Cheers
Bob