Saturday, March 27, 2010

Free at Last - Almost

Jessica and I are sitting here in the room waiting for the nurse to come in with my discharge paperwork. The last few hours in the hospital are the most aggravating because you have your official release but have to wait for paperwork from people who seem to not like doing it. But that's just my opinion and you know how much I like being here.

I finally got fed a little last night, about 48 hours since my last "meal" and a full feeding this morning. I have lost 2.2 pounds while here, that is on top of the 6 pounds I lost over the last month. I have talked to the dietician about ways to pump me up again. Not back to the 225lb days but more like 170, which is almost 20 pounds away.

I found out I am scheduled for another radiation consult on Tuesday, I'm getting to be a regular in the radiation oncology department also. When the receptioists greet you by name you know you have spent too much time in that area! Why more radiation? Because they did a biopsy of the lesion they found yesterday and there were cancer cells present. That means we have to knock those cells senseless so that the lesion can't grow back and cause the same problem in a few months. This is a similar process to what I went through in 2007 when I had the major bleeding problem.

You will more from me shortly - they finally got my paperwork done!

Be Well - Be Blessed!


Friday, March 26, 2010

Bronchoscopy Round 2 Update

Hi friends,
Just a quick note before it's bedtime for bonzo. My head cleared enough to write something coherent and I know many of you are waiting for some type of word.

The bronchoscopy today was successful, performed by the same doc that did my chest tubes in November. He found a lesion in my left lung and was able to cauterize it with the laser. I am told that I will still need radiation to that area to make sure it doesn't come back again but this was a necessary first step.

Thank you all for your prayers, positive thoughts, and notes the last couple days. I am once again humbled by your concern. I'll be back in touch soon. I expect to be released from the hospital Saturday.

Love you all!

Be Well - Be Blessed


Thursday, March 25, 2010

Back in the Hospital

Hi y'all,
As Gomer Pyle would say Suprise -Suprise-Suprise! I got slapped back in the hospital today and to be honest I am not exactly pleased. We came in this morning to discuss whether I needed a bronchoscopy to try to find the source of the bleeding I have been having. We decided that yes I needed it so off we went to the procedure room where they did it under the twilight anesthetic. They discovered I have a couple areas in my lungs that are bleeding and they believe that they can cauterize them with a laser. That means they have to have a full fledged surgeon do another bronchoscopy where they put me completely under using general anesthesia. They thought they could get it done today if they admitted me to the hospital so that's what they did. Except of course plan A never works, so 3.5 hours later they decided it couldn't be done today. Now I am locked up here until tomorrow with no promise that I will even be released after the procedure tomorrow, which they say will get done "sometime" tomorrow. Lovely. So I get all the uncomforts of sleeping in a hospital bed with an IV hanging out of me and people bothering me every few hours at night. How cool is that?

I don't understand why I was admitted in the first place and they certainly are disorganized here tonight. 2 different lab draws within 2 hours, nobody can decide if I should be allowed to eat, and then they brought me morphine for pain relief which I am very allergic to. Personally I think they waited until I was under the twilight sedation so I wouldn't put up a fuss about being admitted. I just am completely baffled as to why I am in the hospital instead of in my comfy chair at home resting up for bronchoscopy round 2.

Heard enough of my belly-aching? Sorry, I just have been on a rant since I found out we're not doing anything more today. Be glad you are not my wife! She's had an earful all night!

So anyway I will be back to you to let you know what the results of this procedure are. It will probably be sometime over the weekend. As always, thanks for checking in on me and God bless you


Saturday, March 20, 2010

Fishing Expeditions

Good day Folks!
Yesterday (Friday) we trekked once again to Froedtert's GI lab for my fourth throat adventure. This time the purpose was to find the cause of continued bleeding. We had surmised that one or more of the 3 esophogeal dilations had caused some damage that was not healing. Alas, this hypothesis turned out to be incorrect and this trip down esophogeal lane was nothing more than an expedition down the wrong fishing hole. My throat looked good but the doc said he did see some blood pooled in my trachea above the vocal cords. So now what? Good question, I don't know. If you have been following my adventures from the beginning you remember that my writings started in 2007 when I had excessive bleeding from a tumor in my bronchial tube. My current situation has nowhere near the same quantity of blood that I had 3 years ago but my concern is that resuming Sorafenib will cause even more bleeding. What to do, what to do?

At this point I have a few days to stew over what the next step should be. I meet with my oncologist Tuesday and we will discuss it then. My guess would be another expedition down the other fishing hole, my trachea. But we may just start the sorafenib and see what happens. I
have had so many starts and stops with this drug that hate to do that but I'm willing to listen and consider all points of view. The flip side is that I hate to go through another procedure that has limited value. What to do, what to do? I'll be back in touch with you next week.

Thanks for checking in on me.
Be Well - Be Blessed!

Wednesday, March 10, 2010

Done with Radiation

Hi There Friends,
Today was the last of my 10 radiation treatments to my pelvis. Something to celebrate! The pain that I talked about in the last post got gradually better over the weekend and then when I restarted treatments on Monday it reared its ugly head again. So I am hoping that now that I am completely done I will get relief that continues until I can reduce my pain meds again. Let's get off this roller coaster.

I'm waiting to find out the next step, should have an idea in the next few days. The hope is to go back on Sorafenib but I am waiting for word on the bleeding I have had in my throat. Once I know what is going on there we can move forward. It is important for me to get to the next step in prevention soon, as my disease seems to moving forward quickly. I need to be on some form of systemic treatment, as spot treatments aren't going to do it for me anymore.

Also in the last post I mentioned the party I threw last year which prompted 2 requests for pictures from it. I had said at the time that I would try to post photos online but never did. Now that I am using Google's service I can use their photo service. You do not have to register or anything to view them so if you are interested have a look. There are 150 pictures, some are duplicates because I asked several friends to send me theirs. Feel free to relive the evening or see what you missed.

Until next time...
Be Well - Be Blessed!

Sunday, March 7, 2010

Feel Like a Yo-Yo

Hi friends,
I'm sorry to leave you hanging so long since the last post. Quite honestly I've felt so much like a Yo-Yo it's been hard to lasso enough ambition to do anything. I won't belabor it with a day by day accounting ups and downs of last week but suffice it to say I have had more downs lately. Must be a poor Yo-Yo operator! First off I was able to make a decent recovery from the nausea attacks of Thursday and Friday. Last week Saturday afternoon and Sunday were actually pretty darn comfortable!

Radiation treatments continued all week and they continued to inflict damage to me. I have felt some improvement in the hip areas that were giving me problems but I have traded that for some new areas! Any of you that were at my party a year ago may recall that I was hobbled by pain that started in my lower back and extended with both pain and numbness through my rear end and down my right leg. This past week I have had a mirror image of that - same stuff but on the left side. I have seen more docs and nurses this week than I care to remember in an effort to get this outbreak under control. I met with the palliative team who upped my pain meds yet again as well as the radiation oncology team who showed me the plan again and assured me that they were hitting those areas with the treatments and could do no more than they were doing. As I have explained before, I know I have a lot of disease in the bones throughout my spine and pelvis but it was still a little scary when they showed me the scan again and I could see the extent of tumor burden in my pelvic region. I better make sure I don't slip on the ice and take a fall because it sure looks like that area is weakened considerably!

So - bottom line for the week has been significant pain from the hips down through my left leg. I have not been able to get it under control no matter what kind of chemicals I threw at it. Sitting, standing and laying down all were a challenge. I'll be reasonably comfortable for a short time before things flare up and I have to change positions.

I know that it is impossible for doctors to tell someone exactly what kind of reactions to expect from these treatments but it's frustrating to have all these new things developing when I was assured only minor side effects would surface. They say that what I am experiencing now is a "pain flare" which they describe as an unexpected temporary increase in pain. They think it is being caused by the radiation and are hoping that when the treatments are done the flare will subside. The thing with radiation is that it continues to work for weeks after the treatments have stopped, which is great for fighting cancer but not so great if you are waiting for a pain flare to subside. I've had 2 days this weekend with no treatments and no relief from pain so I expect this "discomfort" will continue well past my last treatment on Wednesday. Terrific.

My company will be displaying our wares at the Sports Show at State Fair Park this weekend. The show runs 5 days, Wednesday through Sunday. It is our most important retail marketing effort of the year and I feel like a schlepp for not participating. But there is just no way I can spend any time at all on my feet. I probably would not even make it from the front door to our booth without stopping a few times. But if you go please stop in to see us. Spend a few bucks,
shoot the breeze, drop my name, drool over the cool accessories, whatever makes you happy. Booth 1320 in the center part of the hall.

Before I let you go - One last important piece of information. Last week I described a new medication I'm taking as melt-in-your-mouth. It turns out the proper medical terminology for that type of pill is "Orally Disintegrating". When I learned this I could only think of the old M&M commercials where they claimed that M&M's "melt in your mouth not in your hands." I'm really glad that medical people stay out of the marketing business and vice-versa. Would you buy a product that Orally Disintegrates?

Be Well - Be Blessed!