Bobaloo Musings

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

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

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

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

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

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.

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

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

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