Saturday, April 5, 2008

Beer Run!!

B, double –e, double-r, u, n. Beer run!

I went on a beer run today, without the first “be.” In other words, I went on an ER Run.

I was up early and went out to take care of some business. Got home before Ben ran off to work, so we talked a bit and then I went to lie down. I was tired!!!!

So, from about 12PM to 5PM I stayed in bed. I would awaken for a while and then go back to sleep. I thought about getting up and getting my pain meds ‘cause my liver was killing me, but didn’t even have the energy to do that. I’ve learned; the pain meds are at my bedside now.

But I just felt crappy. So when I woke up enough, I took my temperature and found that I was 101.3 which is above the 100.5 threshold that I’ve been told about. So I called the clinic and eventually got the on-call doc. She sent me to the ER for a look.

My blood tests are pretty good, my neutraphils are somewhere in the 80’s which is great!! Neutraphils are the little buggers that kill cancer cells!

But why did I have the fever? I did forget that the Packer Candy contained acetaminophen, which actually lowers temperatures. So all those temps just below 100 that I've been talking about are due to the PC lowering my fevers; my temps are actually higher.

But what is causing the fever? The blood tests and a couple of x-rays don’t seem to answer that question. So they are going to do some blood cultures to see if there is an infection somewhere in my body. Like a hip joint maybe? I’ll find out Monday.

In the meantime, I’m supposed to rest. So I brought the computer into the bedroom along with my Igloo cooler set up to run on house current. I have all my cool drinks right here by my bed. If I rest anymore, I’m going to have to have you guys stay in bed for me!! Think you can handle that?

But while I was at the ER I went from hot and sweaty to kinda cool. And after not having anything to eat all day, I ended up feeling hungry on the way home at 9:00 PM.

What a day!

Kunolunkwa, y te quiero!

Friday, April 4, 2008

Not So Good Today

Fever is still just below 100, so that’s cool. I’m curious what is fueling the fever, but right now, I don’t know. But, receiving a phone call early this AM, if 9:19 is early, exacerbated the pain in the hip. I had forgot about the hip being so rudely from a sound sleep, and tried to get out of bed too quickly. So it’s been acting up all day. It doesn’t cause pain that requires me to do something different while walking, but it does ache. The pain actually goes down the front of my thigh to the knee. AND, the tops of both my feet have been feeling an unusual pain there as well. Not a clue what’s going on there, either.

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I ran across another cancer blog while looking for some info on sweating. The guy has been doing this longer since he has kidney cancer. Currently he’s in the hospital having fluid drained from his abdomen. His daughter/wife—I don’t know which—is posting for him. The little I read brings back memories. I sat there nodding my head going, “Yup, yup! That’s what it’s like.” I hope he does well.

He is from Georgia and has a friend from California who also has a blog who is in a similar boat. I didn’t realize that I had had such a good idea when I started mine. We should compile a list of cancer bloggers and publish it somewhere.

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The phone call this AM was from Moffitt, asking for some info and for me to obtain some info from my current supplier. I’m curious why ABCMC hasn’t provided the info and the quantity required. I need ALL my imagery and they gave me only the last PET Scan for Moffitt. I need the original biopsy slides plus all the chemo records. Looks like I have to get more involved again. *sigh*

Another issue is that the earliest they can get me in, so far, is May 12! I explained that I had to wait to find out when I would have the time because VLCC doesn’t answer questions about the “what is next” kinda thing. And since I have been given 3 to 6, May 12 represents almost 2/3rds of my minimum. That doesn’t leave them much time to “save” me. So we’ll see what they have to say, if they can move things ahead at all.

So, Kunolunkwa, y te quiero!

Thursday, April 3, 2008

Family Visit

My cousin, Judy, called a day or two ago and wanted to stop by today. As long as she was coming she thought she’d bring her mom, her sister, her daughter, and our uncle. So it turned into quite a get-together.

The family stuff we talked about!!! And knowing me, I had the computer hooked up and we reviewed several websites, including this blog, and a whole mess of photos.

There are sites where I could post a whole mess of those photos, hand out passwords to the site, and you could download to your heart’s content. Especially since some people don’t empty their inbox too terribly often, right Judy? :-P But it would take a while writing the descriptions...

Speaking of pictures, we took a few with all the cameras here and so I thought I’d post one or two. The first one has my Aunt Imogene and Uncle Art seated in the front row, while the back row starts on the left with my cousin, Judy, Judy's daughter, Tabitha, my cousin, Margaret, and I'm not sure who the guy is on the right. We dragged him in off the street. But don't you think his hair and beard are coming in nicely, not too scruffy looking?
The second picture shows Uncle Art, Aunt Imogene, and that street guy again. Does the German and Norwegian side of the family show at all?

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Today hasn’t been too bad. My temp has been just below 100 all day, but the trigger point is 100.5, so I’m cool. Get it, less than 100.5 --“cool.” Boy I hate it when I have to explain the puns!

The stomach still hasn’t given me any trouble, although I do have small aches and pains all over.

The hip joint still hurts when twisted the wrong way but otherwise isn’t too bad. It was kinda funny how solicitous everyone was with me getting up and down all the time. I tried to make them understand that I can do what I’m looking to do; I just have to move slowly to keep from hurting the darn joint.

So, I guess I’m going to start to get ready for bed. I’ve been tired all day. BTW, I have a post in the works that I’m going to need your help with. You’ll see my dilemma. Later!

Kunolunkwa, y te quiero!

Wednesday, April 2, 2008

Second Opinion!

It’s amazing what kind of attention those two words can generate.

Early today I had told Beth of the Radiation Oncology side of the VLCC that I was going to wait until after my vacation to schedule any radiation treatments for my hip. The doc is going on vacation next week so the only time I would have been able to see him was today. His partner, the doctor who didn’t know or who couldn’t tell me anything about my condition the last time the first doc was on vacation to Hawaii, was then recommended to see me to get me started on a course of radiation for my hip.

I declined.

I told you about my “hero,” Kathy, who went through all the different departments to generate the medical records that the H. Lee Moffitt Cancer Center would be interested in, including obtaining my PET Scans. She faxed HLMCC the info and left the CD at the VLCC for me to pick up before my appointment with Physical Therapy. When I stopped by to get it, “they” were ready for me.

I explained that I would be going to Florida on a vacation, and while I was there, I was going to take advantage of the reputation of the HLMCC to get a second opinion.

So why wasn’t I getting started on the radiation treatments?

First, I wanted to see what Physical Therapy had to say. Then, since my vacation was only 10 days away, I figured I didn’t need the hassle. Besides, there is the possibility that the indication of cancer in the hip joint is just a false positive.

OK, between you and me, who reads these scans anyway? Usually, it’s someone who has never spoken to me, someone who couldn’t tell me from Adam. Remember when they called me a 56-year-old FEMALE in the one x-ray report? They have no idea about the old injury, the fact that it was killing me the day of the scan, etc.

Before these scans they keep me in a bed in a quiet darkened room so the “special sugar” only goes to those areas that are actively needing the energy, like the cancer cells. My body, trying to heal tendonitis in my hip joint needed that sugar, too! Bad!

So Kate, one of my favorite nurses, BTW—ask the kids, she’s from Ireland—told me that there were “indications” of damage already occurring. She also said that just a couple of hits of radiation would help with the pain.

The funny thing is that the pain has lessened somewhat today. Using the darn crutches actually causes me to irritate the area; just plain walking carefully doesn’t.

So how was their sales job? Would you have bought into their plans?

Talking with Bridget, from the Physical Therapy department, she said, “I really don’t know what it is that they want me to do for you other than show you how to use the crutches, and you seem to have them down pretty good.” Or words to that effect.

So, she examined me a bit; we talked about what is going on with me, the problems to this point, the cancer, and even about Florida. She just got back a few days ago. She celebrated St. Patrick’s Day in a Cubano restaurante! :-D BTW, Amy, she knows of, or ate at that Brazilian restaurant with all the different types of meat! She just couldn’t remember the name.

She has cancer in her family; she’s seen what can happen. So we talked about the future for me, and the plans I have to beat this thing. She even gave me her card and voicemail number so I can let her know how I’m doing IN 7 MONTHS!

I liked this woman!

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This is my diary. I want to keep a record of what I’m doing here and accept the consequences for any bad choices. I’ve gone on record indicating that I think that the decision to employ radiation therapy on my left hip might not be as necessary as Conventional Medicine seems to make it. I may be wrong, but it was my choice, not theirs.

That brings me to my meds. I have gone on record before regarding the use of proton pump inhibitors, drugs like Prilosec and Protonix. They are meant to be used for a short period of time only, like 3 weeks. I’ve been on them for over 8 months. Constant use of these PPIs causes the body to eventually overcome the effect and the stomach starts to produce acid all over again. Irreversibly! It’s then a hyper-acidic condition and visits to your doctor then for the rest of your miserable life.

I wanted to prevent this. Using soda pop and orange juice for the acid content to help prevent the candida albicans (thrush) was also an excuse to get some acid in my stomach. But I wanted to stop using the drugs! So I talked to Dr. Himmy about it, and all he said was “So stop.”

I wanted to wait until I could set a baseline (thanks, Ben) for the pain level so I could keep track of what was going on. It looks like I won’t be able to do that. So, April 1, no joke, I gave up the Protonix.

It was kinda funny because late yesterday, the first day I was off the drugs, I was hungry! It was the first time that I wanted something to eat, at that intensity, in quite a while. This morning, when I woke up, I was hungry again!

Now, imagine how Protonix sales would go through the roof if folks were to find out that it is actually an appetite suppressant!

So, I’ll keep an eye on the pain levels (so to speak) and where the pains are and see if I can finally stay off the Protonix.

It should help with digestion, metabolizing my magnesium oxide pills, and a variety of other ills. So wish me luck!

Kunolunkwa, y te quiero!

Tuesday, April 1, 2008

False Positives?

Apparently, the PET Scans can exhibit false positives:

"As well, false positive results may occur in the presence of active inflammation or infection, since white blood cells that mediate the inflammatory process take up glucose at a high rate."

"False positive scans can occur because of metabolically active tissue taking up the tracer FDG in high concentrations. This may be seen post operatively, in a focus of infection or inflammation."

So let's see, on April 19, 2004 at 5:19 AM I get run into by a spotting truck injuring my left hip joint. Most every time I get inflammation, possibly arthritic inflammation, that joint causes me pain.

My last PET Scan, taken on March 21 of this year, was during such a flare up! That particular black spot on the image to the right of my bladder--my left side in real life--may not be cancer at all, but the indications of severe inflammation. Feels like inflammation and tendonitis!

The doctors have me believing that this is bone cancer. Shouldn't they be telling me that this may just be a reaction to the inflammation?????

If you want to be afraid, talk to the folks that want to control you, for whatever reason. If you want to live with less fear, learn to think for yourself! As Epictetus said, "Only the educated are free."

Kunolunkwa, y te quiero!

Monday, March 31, 2008

No Wonder I Hurt

I forgot to take my pain meds today. Oh, I took the AM meds, but have been too busy to think about pain; so I just block it out. Later, when it really starts to act up, I mentally review the possible causes and, DUH, I forgot two doses of meds. There are days when I think that I need a keeper.

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What kind of system is it, when a customer, in pain, has to traipse around to 4 different departments around town just to get releases signed so his medical records can be transmitted to another facility for a second opinion? Certainly not one-stop-shopping here.

Things just weren’t working over the phone so it was back to looking for a hero, again. Some system! But I did find a hero, even if she may have been reluctantly drafted into helping. Bless people who have a desire to help their fellow man! Or, to put another way, "Blessed are the merciful, for they shall be shown mercy."

I tried to get my medical records released to H. Lee Moffitt Cancer Center today so I can drive down and get a second opinion. My insurance company actually likes the idea of the second opinion, and I’m wondering why that makes me nervous. But they’re willing to pay to pay for some mileage, per diems for food and lodging, etc. So why not? And if I can catch some rays on the beach, I mean to generate some Vitamin D through the exposure of my pasty white skin to the sun, again, why not? Medical expenses, right?

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So, I’ve talked to my insurance company, the current local Clinic, and the H. Lee Moffitt Cancer Center. I think I have things squared away. Now, I have to see if I can get some vacation time from my company! You may think that's funny; I'm not so sure.

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I have still been running a slight fever. I’m sure it has something to do with the cancer, probably the stuff in the liver. Don’t know for sure.

And using crutches in the rain is a royal pain in the groin, or maybe it’s the hip. That joint or the tendons right there anyway. I still need to find a diagram of that joint so I can determine exactly where the pain is coming from.

BTW, how are the PET Scans working for you guys? I know what it is I’m working on, so I can see what’s there. But you might not be able to. I do have a couple of options for attempting some changes if anyone needs a better view. Let me know.

I’m off to do dishes, wait for Ben to get home, and then it’s off to bed again. Get up, go to bed. Get up, go to bed. There should be more to life than that! :-)

Kunolunkwa, y te quiero!

Sunday, March 30, 2008

PET Scan Imagery

Wow, that went easier than I thought. The only issue is will the pics be large enough to be visible posted to this blog.

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I was diagnosed sometime in August after seeing a Doctor of Osteopathy in June or July who sent me home to take Prilosec OTC. I’m more philosophically in tune with a DO than I am with an MD, but it looks like this time they failed me.

When I saw my new PCP for the first time, he wasted no time referring me to a GI doc. This doc performed an EGD and took several biopsies. Unfortunately, the system lost my biopsies and I had to have the procedure repeated.

Then, I underwent my first PET Scan on 8/27/07. This is what they found. The circled areas are the cancerous sections. You will see some spots that normally take up the radioactive sugar, including the bladder way down below.
Don’t look too close; privacy you know. As the Japanese say, "Nudity is often seen but never looked at!" :-) It's not often that I appear this naked on the Internet! And if you've seen those videos, I can assure you that they are fake. They photoshopped pictures of my head to some other guy's body. Some lucky guy's body! :-D

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“Dramatic Improvement!” As you can see from this 10/19/ 07 pic, there has been a significant reduction in the size of the tumor in the stomach. I’ve circled the areas where the cancer had metastasized but is no longer active. Yay!

So all I have to deal with is the circled stomach tumor and the lower esophagus.












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This is the 12/14/07 pic that shows some regression, the tumor is somewhat larger after all that chemo. This is the scan that solidified the decision to get the Radiation Oncologist involved.

But otherwise a pretty clear image, wouldn't you say?















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Then there's this one. This is the recent, 3/21/08, PET Scan. Notice that the tumor itself is almost gone, if not gone altogether, but there are multiple sites of cancer all over my body. From the circled hip area down near the bladder, to my right side (the left side of the pic) liver area, to the circled lymph node up where they had been active from the first pic.

Now, going from little bit of tumor in the 12/14 scan to the cancer all over the 3/21 scan, something has happened. What could that be?

One of the things that I, and others, have complained about is the efforts by the allopaths to reduce our immune system’s ability to fight off cancer by dosing us with chemicals that are supposed to kill our cancer but actually let’s some of the drug-resistant cancers to grow.

If you recall, I was so sick, my blood levels were so bad, that they couldn’t even give me chemo the last two or three weeks in a row. So let’s see, a severely weakened immune system, an increase in the amount of cancer sites; I’m starting to see a pattern here.

So, only the future can tell what will happen with this cancer. I’ll continue to do what I can to fight it off. I'll be available to take any questions you may have, although Ben and I may run out to a Mexican restaurante!
Kunolunkwa, y te quiero!

Another March Birthday Wish

I wasn't kidding when I said that a majority of my family was born in the spring and are actually Aries, astrologically speaking. It makes remembering the birthdays kinda easy. Now if I can just keep the 'who on what day' correct, we'll be fine.

So, Happy Birthday, family member!

I'm reticent about telling b-days for people on line, if you know what I mean. If you want to acknowledge my b-day wish and broadcast the date to the world, that's fine with me. I just want you to know thta I know...

And on another matter, while I'm thinking about it, CJ, if you're out there today, it's kinda funny 'cause I'll be putting an email together for another CJ today to discuss what to do, what to do, health-wise. Coincidence? I think so! :-) But still curious.

Oh, speaking of birthdays, there's another one coming up where someone actually turns 50 the day after his 10th wedding anniversary. Are we going to let a 50th go by unnoticed? I hope not.

OK, so I'm up, took my pain meds right away, but I need to get the rest of the meds going and then start thinking about breakfast. I still want to get the PET Scans posted today plus read all the sites I normally visit. And now that I can't multi-task by running back and forth between rooms it'll take more time.

Again, Happy Birthday, kunolunkwa, y te quiero mucho. Those words mean so much more today!