CT Restults February

Happy Presidents Day!
Maybe I will make this a policy to post on holidays.
I know most of you and I too had to work but somebody gets these BS holidays off. My first big day back, I of course overdid it. I left the house at 10:30 and did not get home until after 6 PM. So I am paying for it tonight. Probably have screwed myself up enough that I won’t even be able to drive myself into work tomorrow. But I do this every time. Not a surprise to anybody.
Anyway, on to the news.

CT Results. Overall a bad score on the CT. Pretty bummed out, we had a bunch of "=" signs in the no further development in the multiple liver tumors, or the pancreas tumor, or the lymph node tumor, or the spinal cord tumor (which I don’t remember being there, but nothing surprises me anymore, very well) , but no "+" signs for any shrinkage of any of the existing tumor sites, and two new "-" signs.
The two new negatives are the big news of the scan.
The first is that I have new growths that have appeared in the spleen. There are two new metastases that are very small right now on the spleen which has been clear up to this point. Now I don’t know how many organs I have in there, but I seem to be running out of ones that DON’T have any tumors at this point. The lungs and the kidneys are all I can think of that either have not been removed, previously operated on, or currently have cancerous growths. This is getting pretty damn ridiculous.
The second negative piece of news is that I have a new blood clot. This one is located on in the vein that the venial port catheter runs through in the chest.
I seem to think this blood clot around the port catheter is a big deal but the Dr. downplayed it. Maybe they just did not want to scare me.
I saw myself in the mirror tonight and the veins on the left side of my chest and my left arm are bright blue. The right side is normal flesh colored. It looks like a drawing in a medical book, where they are giving you an inside look on one half of the body.
This concerns me. If they are that dramatically different looking, then they have to be that different functionally as well. Maybe I can get a good picture of it. Let me go try....
Ok, it came out so-so.


You can see the blue veins on my left but not my right. (Also my intimidating Schwarzenegger like chest physique.)
With it being taken with the flash, it is not nearly as easy to see as with the naked eye.
In person the blue veins are MUCH brighter than what you see here. It looks like they have been painted on. I think blue veins means they are not getting enough oxygen.
They neglected to tell me exactly where the blood clot is, but for the veins to be used as a road map it has to be right by the heart. Remember that is exactly where this port goes. That scares the hell out of me. I have a blood clot right at the entrance to my heart in a main vein, (because that is where you are supposed to put the port line) if it dislodges from the catheter tube and enters the heart, isn't that VERY bad? Like possibly life threatening bad? They always freak out about blood clots moving and going to the heart and lungs don't they?
Isn't that why blood clots are dangerous in the first place? And this one is right by the heart. That is the starting point and nexus of the blue vein road map drawn on my body. Not very reassuring. After I left the office and recovered from hearing all this bad news, I had great questions about all this, but of course you are too shell shocked and emotionally rocked to think about this stuff scientifically. It is like you need to bring another Dr. with you that is not concerned about your case emotionally to ask the questions to the Oncologist that you would ask if you only could.

So that would be a negative 2 on the score card of possible 6 now. 0 would be no changes, 6 would be all improvements -6 would be all declined. I got a -2.

The continued bad news about the blood clot is that with me taking blood thinner and having blood that takes 3 times the normal rate to clot it should have been impossible for this clot to form. We were taking Warfarin as a pill to do blood thinning. Well since that is obviously not doing the job, did not reduce the clot in the liver, and a new one developed the Dr. decided we needed to change to a completely new type of thinner that works in a different way and is delivered in a VERY different way.
This is called Loveox and has to be done by injection. Oh, no big deal right. Hell I get stuck with needles at least 10 times a month, I don’t even blink anymore. Bad thing is it has to be given in the stomach. Now between the surgical scars down the center and the new drainage port on the right side, that does not leave a lot of real estate to inject this thing. But we will manage.
So we did the first dose there in the exam room (after we had to spend another hour going over to the pharmacy building and getting the new prescription filled for this wonder drug). The nurse did the injection and of course Mr. big shot can take a little needle prick no problem. Well, the needle I did not even feel, but then the goo they shot into me, HOLY SHIT. I hit the friggin roof. This stuff burns like the fires of hell. I thought she had injected me with acid and I would look down and a big gaping hole the size of a tennis ball would be missing from my gut.
This is the second time in as many months that the 3rd floor of the Hollings Cancer Center has been blessed by a hundred decibel swearing and screaming session by the gentlemanly, mild mannered Mr. Hill. I swear they had to be able to hear me all the way out in the waiting rooms. Everybody there knows me, that is for sure.
This pain lasts for about 3 mins of intense action, then it starts to subside, but in total lasts about 10 mins. After I came down off the ceiling I asked ok we need to do this what, once a month, once a week? No, daily. You have got to be kidding me. Now we have to do this at home every night and I get to look forward to this misery indefinitely until the clots do something.
I just really need break from all this.
Its 1:30 AM now, better try to get some sleep.
Love to you all.
Greg

Happy Valentines Day

Hello all and welcome to another episode of Greg’s insomnia fueled blog posting, brought to you live at 2:15 AM on Valentines Day.

Happy Valentines Day! May you all find true love. If it is even half as strong as the one I have found, it will be enough to fulfill you for many lifetimes.

I haven’t posted in a few weeks, and the last one I did was really not as much as I had to say, but I am just going to have to leave some stuff out.
You guys don’t want to know every detail anyway, sometimes I get carried away. Then I go back and read this stuff, and think, it is pretty pompous of me to assume that people actually care about half the crap I write here. Why should I be so interesting to them?
So I will try to keep it to the highlights this time, although so much has happened in 2008 already. I can’t believe it is mid February! What a crappy year so far (nice way to start a posting right?).

There has not been really any good news to speak of, but a ton of bad.
Lets see.
1) Got two implants put in, they were totally not what we were told they were going to be, and a much bigger deal to recover from than we were told. Mega bait and switch got pulled on us this time. It is a long enough story to warrant a book, and it really should involve a phonebook full of lawyers after everything came to a close.
2) Have been at MUSC for one reason or another 22 out of the last 37 days. Should have a building named after me by now or at least my own parking space. I think I am going to start lecturing there; maybe they can put me on as an adjunct professor.
3) One of those 22 days included a near death experience, the likes of which I have never had before.
4) Have felt the worst I felt since the diagnosis of this fun little hobby of mine since back in 2002, that lasted about 3 weeks.
5) Got my first brain scan done. (Came back clear, does that mean I don’t have any brains…. clear?)
The list goes on, but enough of that.

I have a CT scan today, what a romantic way to celebrate V-tines. I get to drink a liter of badly flavored pina-coloda, radioactive goo. Then get an IV with more sickening radioactive dye flushed through me at 50 MPH, and sit in a big donut shaped machine for the afternoon. I am swooning with anticipation. Oh and by the way, the nice painful operation to get the implants put in which supposedly remove the need for an IV ever again, does not apply to the CT dye, as it has to be put in at high velocity. So that port is useless in this situation.
This CT scan is the big picture one that will tell us the overall progress or regress of my many blooming tumors and blood clots. Friday we will have a meeting with the Dr. to get the results and do our big quarterly planning session for what is next.

This week is my recovery week from Chemo last Monday thru Friday. It has been a rough one again. On Wednesday I slept on and off until 6PM when Cindy got home. I was up for about 2 hours for lunch and to do dishes, at 1:00 but back down again after that. The other days have about like this one, but they should get better soon (please). This whole week I have not had to strength to do anything but stay on the couch and periodically drag myself to the bathroom. Even that procedure took help from Cindy on Sunday and Monday.
Tomorrow I am going solo to the CT scan, so that will be quite the challenge. I will at least double up on the pain meds. I really need to get some rest tonight and not be on here writing to all of you. But I can’t turn my brain off yet. It has been shut down all week.

Let me get to some lighter topics if you still have time to read this while your boss is not looking.
3 of my 4 sisters were able to come down for a visit a couple of weeks ago and miraculously enough those were the best 2 days I have felt all year so far. I am glad they got to see me in good shape instead of miserable.
All of my sisters and my dad chipped in and did a special treat for Cindy that weekend. The theme of the visit was to give her some much needed time off from taking care of my cantankerous old crusty butt and go to a spa for a massage and have her favorite meal prepared (eggplant parmesan). It was wonderful and she enjoyed it immensely, especially the part where she got a break from me, LOL. Many thanks for taking care of my girl and letting her know her herculean efforts are appreciated.
During the visit Tammy presented me with two new sweat shirts. Here is a picture of us together with our matching “Puck Pancreatic Cancer” shirts.

The other one says, “F@#K CANCER”, exactly as I typed it. Let me tell you, these are a huge hit down at the Hollings Cancer Center. The nurses in particular went nuts for them. If you are interested she got them at this site called http://www.cafepress.com/. Go to the shop by category section, and choose medical and fitness. There is a plethora of ailments they cover and hundreds of designs. Great gift ideas for anyone with some kind of sickness or family of somebody sick. I learned here that the purple ribbon is the Pancreatic Cancer symbol thingy. Go check out the site, it is funny to read them if nothing else.

Cindy is a genius. Enough said, and the following idea of hers will prove it.
She noticed that everything I need to get to is always just out of reach or in the other room, and when I really don’t feel good, doing something as simple as sitting up to reach for the phone or a drink can be a big deal. Hurts my stomach, takes energy I don’t have and so on, I know that sounds ridiculous, but there are days when I literally cant even get to a sitting position in bed on my own no matter how hard I try. God forbid I need something that is in another room when I am home alone on those days, like a medication, which we keep in one central location.
So she had the idea to get a Rubbermaid storage drawer set that would be on wheels that I could move from room to room, chair to chair, upstairs or downstairs. I could store everything I need inside it and use the top as a nightstand/tabletop. Well that kind of a tool seems obvious now, but then it was a total revelation neither of us had ever thought of. We got totally excited and went right then, that night, to Wal-Mart to try to find such an item.
They had exactly what we were looking for and it only cost $16. We were back home in a flash and I was quickly planning out the organization of this wonderful tool.
I took it several steps further, you know me, I always go to the extreme in everything I do. So I was planning customizations and additions to the cabinet to make it even better.
It is so useful it deserved a proper name. I christened it the:

“S.S. Cindy - Mobile Command Center” or MCC for short.

Features or the MCC:
- 4 factory installed drawers, each devoted to some grouping of items, (level 1, top drawer, is medications, and writing materials for instance)
- 2 custom installed hooks installed on the port side for hanging or attaching future items as needed
- A custom installed trash bin on the starboard side
- A 6 port power strip with an 8 foot cord located on the lower aft side, to supply power for laptops, cell phone chargers, space heaters or whatever
- 2 custom installed lights that turn on automatically when level 2 is accessed and opened, this illuminates the entire MCC from the inside as it is constructed from clear plastic, very handy in locating items in the MCC in the middle of the night
- Custom installed clock
- and more to come I am sure

Hell, I think we should patent it and sell it to all people with limited mobility or handicaps. This is the greatest thing ever! I love it, and could not survive without it now. It is so much more valuable than the $16 price tag, even with all the customizations.
Here I am giving the tour of it to Wendi (right) and Tondi (left) before many of the customizations were done.

Here it is in the current configuration

I still have so much more to tell you about, but that is all I can do now. This burst of energy is about over. Until we speak again. Love to all of you who care enough to suffer through my blog postings and are interested in me.
Greg Hill (Captain of the SS Cindy – Mobile Command Center)