Wednesday, May 31, 2006

ChemoBrain/ChemoBody [C]

Chemobrain: "Cognitive dysfunction associated with chemotherapy. It is thought that chemotherapy may cause memory loss, attention loss, and other problems that make it difficult for patients to think clearly. Also known as chemo-brain, chemo-fog, and chemotherapy-related cognitive dysfunction."

This includes multi-tasking, word retrieval, recogniton issues (especially with people), etc. Sometimes I have to pause while speaking due to articulation issues. Sometimes I just can't think of the right word. Sometimes it happens too often.

This "symptom/s" can apparently continue well after treatment has concluded........."Diaphragm! "(explain that later, word retrieval delay). I also seem to still have a problem with irrationality/emotion swings. I saw a reference that connected emotional/rational issues to chemobrain but can't remember if it's a symptom on itself or brought about by frustration due to cognitive difficulties.

And, unfortunately, I can get very frustrated.

The problem with all this is it was easy to recognize during treatment. Not so much now. I think it might be a combination of not expecting it and perhaps the symptoms are worse, an accumulation that I can't/didn't recognize? The symptoms, especially irrationality, have snuck up on me several times, even after I read about its existence. I need to keep diligent, watching for it. But is it harder for me to remember these things? Here's a nice circular argument I could have with myself, eh?

Did I ever tell the "Blanket Story" here? Short version: During chemo days, Dani wanted me to bring the blanket and once I did she didn't want it? I almost exploded but I was able to catch this completely irrational emotion. I went to the living room and actually had a debate/argument inside my head. one side saying I was justified in getting upset, the other side telling me what an irrational idiot I was. I started repeating to myself "It's the chemo". The right side one that night. Lately, it hasn't, though. For some reason I didn't think recovery would be so difficult. And maybe, once again, my outward appearance is playing a roll in that. That might amplify my frustration. It's a double edge sword, though. Not losing my head hair and not losing weight was most likely a tremendous help in my Morale and thus my success in beating Cancer. but it still sucks when I lose my battle with my irrational self.

And most unfortunately, Dani is usually around me when I lose my battles. Sometimes I think I don't deserve her. Of all the things she's had to put up with, an irrational Phil is not needed, to say the least. Sorry.

And sometimes my anger might be justified but I am not expressing it well, expressing anger at a perceived slight. i can only recall the basics but I was angry, and telling Dani why I was angry. She thought I was being irrational. I thought not so I went into detail. As I was explaining to Dani why I was angry the real source of the anger revealed itself. Then Dani understood why I was angry.

Does that make any frikken sense to anyone? Lets plod on...

ChemoBody: "Physiological dysfunction associated with chemotherapy. It is thought that chemotherapy may cause increase in injury, hematomas, and other problems that make it difficult for patients to recover physically. Also known as chemo-body, and chemotherapy-related physiological dysfunction."

OK. I made that definition up.


I kill me! But, actually, there seems to be something going on. And I don't think chemobrain is causing it.

1. As some of you may have heard me whine about before, I'm fat. I need to exercise. My sneakers were 3-4 years old and I was getting shinsplints just from walking in them. So I got new footwear, Trailrunners. Within a few days I had some blisters (typical), and a hematoma under my left big toe (atypical). The toe was sensitive to touch. I couldn't wear anything but sandals for a week. I don't recall injuring it. Dani said I stubbed it earlier. And I recalled that incident after she mentioned it but it didn't seem connected. That disconnect may be chemobrain or.....

2. We went to our friend Claytons Family Farm outside of DC for Memorial Day. Beautiful land. We had been playing all day (I'm like a Fresh Air Kid when i get out of the city) and I noticed my right ankle hurt. Then it swelled up considerably. I have no idea when I hurt it, no defining moment. It required ice and the next day the swelling was gone along with some pain. Still dificult to walk on.

I seem to injure easily and I don't know why. Maybe it's the lack of activity?

Diaphragm. Sometimes after i eat my Diaphragm area becomes "bloated" and feels very uncomfortable. I'm talking expanded to the max. Might be an issue with my digestive system still out of whack. Maybe an allergy?

Note - earlier today I was thinking of that symptom and couldn't remember the word "Diaphragm" until I was writing this entry. Word retrieval difficulty.

So, on some days, ie yesterday, I can be in total irrational mode with "chemobody" galor and I'm about as much fun to be around with as an angry badger. Add that it was 93* in DC with a Heat Index of 100* and I can become a rabid badger. And if you've never seen an angry badger then consider yourself lucky.

Most days, though, I feel really good and I don't expect chemobrain to last forever.

Oh. One other thing. My Left Nipple hurts when I press on it. No idea why. But on that bit of TMI I'll say goodbye. LOL!


Sunday, May 28, 2006

Dr. Not So Gloomy/Where's The Party? The AntiClimax [C]

Post treatment visit with the Doc to get the "final word".

PFT test results: Lungs are fine. No damage. "Wow". I'm surprised.

PET Scan results:
1. No definite evidence for a FDG avid malignant tumor
2. Diffusely increased FDG uptake in the axial and appendicular skeleton consistent with bone marrow hyperplasia secondary to chemotherapy. While such intense activity limits evaluation of the skeleton, given this limitation, there are no discrete foci suspicious for osseous metastatases.

like that second "impression"? Bone marrow cells undergo intense growth after chemotherapy in younger patients (hyperplasia), therefore an area of my skeleton glows from the PET scan - a false positive. No discrete foci for osseous metastases means no skeleton tumors. Capice?

I'm negative for Cancer, dammit! HalleFuckingluiah!

I give my Doctor a heart attack when I tell her my hands and feet feel swollen. She drops to the ground and checks my feet. Swollen feet are a sign of heart condition, secondary to chemotherapy. she says they're fine. Must be the weight gain. :( Sucks but it beats death, no?

I'm cured! I don't believe in remission, that's for pessimists. My Dr., however, doesn't share my philosophy. There may be Lung/Heart issues, along with secondary Cancers. I will have a CT Scan/Onco visit every 3 months for a year. Then every 12 months for 6 years. then My Doctor will be convinced I'm free. I think She just has the Hots for me and can't let go.

But I'm officially free of Cancer. So why no Party? Dani and I are both react with a blasé attitude. In fact, we don't "react" at all. it sucks to lose someone you love to Cancer. Like any other loss, you mourn. Why aren't we reacting in the opposite way?

I think because it's been such a long struggle. One that was physically and emotionaly draining for both of us. It consumed our lives. Focused us on me kicking Cancers ass. then there was the second PET scan after 8 treatments. We both cried with joy after we heard the results. Then there was my last treatment on 4/28/06. We cried with joy then. Then my last PET scan on 5/4/06. I think we both assumed that if the scan showed Cancer we would have been called immediately for more treatments.

And once I started to feel "nothing" we both felt.................done. We were done with this. So when the Dr. confirmed I was Cancer free we were done and had been done for a while. No need to celebrate. No desire.

Dani described it as your last finals in college. you study for them for months, take them, finish them, and then say "Huh, what next?"

We are done.

It's been a long road, somewhat hellish road. But still filled with some amazing happy times, the best times of my life with many more to come for Dani and I.


Feeling "Normal". Feeling Weird. Feeling Nothing. Life is Good. [C]

Saturday, 2 weeks plus one day after my last chemo treatment. The longest i've gone without chemo since November. It's a beautiful day. Dani and I go for a walk. We are on Florida Ave, just past 14th St. when it hits me: I feel.....................................nothing. And It feels really, incredibly, nice. I express this to Dani. I feel so good, so not unwell. My eyes well up with tears.

For 6 Months I was not well. Most of the time, or maybe about half the time, I thought I felt well. I think it was that "survival mode" thing; Focus on the pain and it might drive me nuts. Might even kill me. Positive attitude is so much of the battle. it might also be that I felt "well" relative to how I felt 3-7 days immediately after chemo, when I felt like ass in so many ways.

Now was different and it was so obvious. I could breath better, there was no pain anywhere in my body, I wasn't fatigued. If I think about it I do notice some tingling in my left fingers. But that's it. I don't know if I'm describing this well. I feel nothing and that feels wonderful. I look at the sky as we walk and can't help but think how wonderful it is to be alive.

Chronic Pain Sucks. [C]

I got a taste of it with that arm pain. It lasted for about a week. There was nothing I could do, nothing made me feel good. I tried Arthritis pain relievers, Alcohol, but nothing worked. I described it as a "6" on a scale of 1-10 but in retrospect it was more like an 8-9. I think I was downplaying it so I could live with it. Focusing on the pain might have driven me crazy. It was always there. A dull, intense, pain. I didn't sleep much during that period. I feel for anyone who deals with it most of their lives.

BTW - Older people don't need less sleep, they get less sleep because of aches, pains, etc., wake them up. Been there, briefly. If I haven't made it clear, it really sucked.

PET Scan to see if I'm Cancer Free. Of course the douchbag can't hit the first vein. My scan was delayed a little because the person before me moved his head during his scan. I don't understand that. I sleep through mine. Can't have anything but water for at least 6hrs before the scan. getting up and driving to the Hospital on an empty stomach and without any coffee takes all my energy. How could one be awake enough to "move" during the exam? especially since they strap you in pretty good?

Last blood draw. I guess they want to make sure my cell lines are recovering.

Pulmonary Function Test. I'm a little worried about my Lung capacity. It seems different and can be easily affected by Chemo. So my Dr. orders a PFT. This one takes about 10 minutes. My first one took 30-40 minutes. Dani thinks something must be wrong. I think my Lungs must rock...................mostly.

My next Oncology appointment isn't until 5/26/06. We both decide, to ourselves, that we aren't gonna worry about the test results. Not gonna bug them about it. time to get on with our lives, no?

Saturday, May 06, 2006

Drug Addiction or Pain; WTF Can't I Sleep? [C]

it's 7:30AM EDT. I went to bed at 1AM and woke up at 4AM. Fuck.

The Pain started Wednesday night. I had a PET Scan that Morning and took my last shot of Neupogen around 7PM. The pain is in my left arm, forearm area and upper arm near shoulder (not really localized). It's dull. This is the arm that I'm experiencing some neurological problems from chemo (tingling & numbness in the hand). It's also the arm in which I received my last chemo. Most of my chemo has been in my left arm. I chose the left one for my last dose b/c my right arm felt perfectly fine. I didn't want two arms potentially fucked up. And most of chemo was in my left b/c I'm right handed. It's choosing to potentially sacrifice your "weaker" arm.

If I'm not being clear: the chemo drugs easily damage the injection area because they enter highly concentrated and then diffuse as they travel. This is why the Nurse is always careful with the slow bolus injection, making sure there is good blood return every few mls of injection. If not the needle is against the vein wall and that is "not good". the drug can probably eat through the vein wall. And why there can be irreversible nerve damage

So, you choose, if possible, to have most of your injections in your weaker arm.

Am I babbeling?

So, the pain in my left arm could be from chemo injection or it could be from Neupogen. Or maybe something else? It was so bad Friday night that Dani paged the oncall Oncologist. She usually does b/c I'm an idiot about these things. the Onco suggests I apply heat and elevate the arm. he's thinking Blood Clot. I'm thinking He's an idiot. We try heat. We try a towel heated in the drying. Didn't work. We ended up wrapping a heating pad around my arm with bandage gauze. The heat worked as long as it was on high enough to burn me. And maybe "worked" because I was cutting off my circulation pretty good. In fact, my inner elbow still has some damage from heat/friction. So I apply heat in a very limited way, to say the least. And there's no way I can sleep with the heat.

Oh well.

On the 1-10 pain scale I give it a 6. Other than that my hands might be a little swollen and my right thumb looks to be 2x the size of my left.

So besides my arm I'm feeling good. No Nausea so I decided to forgo Zofran & Lorazepam. I have a few Whiskey's to celebrate America's Toast to Mexico kicking French Butt. Why are we so fixated on the French losing battles?

Anyway, it seemed like I was tired when i went to bed but I guess not. The question is did the pain wake me or the lack of Lorazepam? I took it 7 days straight this time and it is highly addictive. i would like a painkiller for my arm except in that it might do the same thing....................I just lost my left contact. It's been bothering me for a while, guess I'll toss it now (I have a supply of extend-o-wear)..............OK. So I don't want to take a painkiller b/c I hate the thought of becoming dependent like I might have become on Lorazepam. No matter how slight. But I hate not sleeping, especially since I'm in pain. I almost did some shots of Makers Mark and even thought about taking my last Lorazepam, for a second. Then I thought; "Fuck it. There are way worse things I could be experiencing right now." So i guess I suck it up for a while and try not to be too pissy about the pain and lack of sleep. Wish Dani luck!


And now, my left fingers are starting to hurt from typing. I should probably stop and take out my right contact.



My Body Pathetic - Post Treatment Week 1 [C]

I'm in the worst shape of my life. Before I started this fun I was in the best shape of my life. Well..................I mean I was in good shape if you don't count that little berzerker traitor that was trying to kill me..........Little Fuck.

Where was I?

Oh yeah. So here I sit after 6months of doing nothing but fighting that little Fuck. I'm @184lbs (30lbs over), my muscles are crap, some periphrial neuropathy in my left arm along with some moderate pain, possible Lung damage, and my bone density has most likely been affected negatively. Hopefully my Doc will approve a density test. I have a Pulmonary Function test next week. The neuro damage is slight and may not be permanent.Hopefully the weight gain was due mostly to the Steroid Dexamethasone.

How to De-Jellofy? I'm gonna attempt to Walk to the Smithsonia Museum of American History. It's 2 miles due South, no elevation gain or loss. Sounds pathetic, doesn't it? Baby steps. This sucks.

I want a Camel Light.