Wednesday, August 30, 2006

Wedding T-2 Days. 7/6/06 [L]

OK. Sorry for the delay. Truth is that day is all kind of a blur. I might ask Dani to edit. I was also hoping to hotlink photos but webshots decided to "update" their software. That means everythings fucked up and nothings running smoothly, of course. I can't even seem to host webshot photos through ImageShack. I spent an hour or so screwing around with webshots. I'll use images off of my PC and host them on imageshack. Why the hell do I have webshots? Anyway:

Thursday, 7/6/06
Dani's Mother, Sister, and two nieces arrive at National Airport from Missouri, around 10AM. The nieces are pilots, apparently

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Lauren is on our left and Rachel on the right.

This is the first time I've met them but it was like I knew them. It was very nice that her Mother expressed the same sentiment. Her nieces were little energizer bunnies on Meth. After we set them up at their B&B on 14th & T St., we all headed down to the National Mall. we did the almost-complete-tourist thang:

WWII Memorila -> Vietnam War Memorila -> Lincoln Memorial.

This aint the easiest thing to do on foot. After the sites we headed home for Dani's famous Veggie Lasagna. On top of that dani's friends, our friends, Lizard, Molly, and Courtney stopped by. Words can not describe them. Great People and Dani has the most amazing circle of friends I've ever experienced.

The nieces, The Terrible Two had worn out everyone but me, until the end, 12 hours after they got here. personally, I had a ton of fun with them. The in-laws and Dani were apologizing profusly for there actions but I enjoyed it. I didn't find them all that tiresome and after all, I can wash my hands of them at the end of the night.

We walked them to their B&B, came home and passed out.

Tuesday, August 29, 2006

Clarification On The Cancer Thang [C]

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A Piece of Random Art in DC.

So, I think maybe my last two posts freaked some people out? At least that's what I've gathered from some calls to Dani & emails to me. And Honestly Dani & I freaked out on Friday. So much so that we cancelled a backpacking trip into the Adirondacks for this week in case the PET Scan was scheduled.

The question is: is this abnormal or is this gonna be a part of living with this crap? I'm gonna break it down here. Remember, I think while I type so God knows where this is going.

:D

I. What's the Danger?
Any Cancer that's not completely obliterated the first time around is gonna come back like a Bat out of Hell and will be more often deadly than not. Hence the Uber caution & concern of my Dr. Initially, the abnormal CT scan would not have worried her. However, I have itching that appears to have no source. These two events put my Dr. on alert.

II. Itching
Itching could be from skeeters, the 12+ types of flora growing wild in our backyard, reaction to the Barium in the CT scan, Hodgkins. I haven't had that type of itching since Friday so I'm hoping that's a good sign

III. Abnormal CT Scan
The scan showed my Bone Marrow Cells (Stem cells) were growing at an accelerated rate in my abdominal area. This was evident in my last PET scan in May. It was expected then and not too shocking now in the CT Scan. during chemo Stem cells grow rapidly in younger patients. Now they might be trying to regenerate from the damage of chemo.

IV. How Fucked Up Were My Stem Cells?
The day of my last treatment my Cell counts were low. Low enough to cancel chemo. Since it was my last one my Dr. authorized treatment. In fact, as a safety precaution the treatment Center needed verbal authorization along with the piece of paper from her telling them to do it. So I'm thinking chemo with a low cell count really knocks one's cell count way down. Furthermore, since it was my last treatment I wouldn't be taking my Neupogen shots which stimulates cell growth.

So at this point I'd like to note I was pretty damn immunocompromised after my last treatment and did not get sick. Props to my Immune System, no? :D

So having a young, Killer (pun intended) Immune System, it's regenerating at a rapid rate and throwing the scan off.

V. PET Scan
Has yet to be scheduled. In any case, I believe it will also record a "false positive". There will be glowing from my cells regenerating rapidly. However, if it were Cancer the PET would pick up more intense "Foci". From my Last negative PET Analysis:

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.

FDG being the radio-tagged Glucose. So the PET scan will pick up what the CT scan can not. Or in this case (knock on wood, puhleeze), pick up what is not there.

This of course is a "disadvantage" to a "Blood Cancer". Leukemia/Lymphoma can be found anywhere and it might be difficult to discern. But solid organ cancer still seems far worse to me; Lung, Breast, Ovarian, Prostate, etc. And I know of people who have had worse false positives, being told they have a tumor only to find out it was a mistake.

What Can We Do?
We're doing it. I'm being vigilant. Gone are the days where I casually ignore something that's not quite right. My Doctor is being vigilant. I think some Doctors would not be so quick to schedule a PET. Since there is nothing more we can do then I choose to not live in fear. It was wrong to cancel the trip but I say that in hindsight. I was unprepared. I guess stuff like this will happen for the rest of my life, maybe? Can't let it interfer with living life, eh?


If the Dr. doesn't call in the next two days we will be off to the 'Dacks after the Labor Day weekend. I mean, I'm not so crazy that I would drive on a Holiday weekend. That's just asking for it.

:D


Peace.

Saturday, August 26, 2006

I Don't Frikken Believe This. [C]

OK. Before I Start I owe some stuff that I promise to post later.

7/8/06: Dani and I got Married

7/12/06: Our Honeymoon in the Adirondacks.

It's been a busy Month or so. I hope everyone got our Thank You's regarding the Wedding.

On to the Bullshit.

My last Post ("I Won") was Tuesday, 8/22/06. before my CT scan, no? I was worried. That post was a reflection of my worry. My drinking is getting a little borderline and I need to cut back. Soon. Very soon. :p Anyway, I'm paranoid. I try not to dwell on Cancer and I do a good job of it. Until an appointment for a scan draws near. So this past Monday & Tuesday I was a little itchy. I had been spending lots-o-time in the backyard with the Wild Kitties.....................have I talked about the wild kitties here? If not then I'll post something regarding that. Later. So I thought the itchiness was due to Skeeter bites from the backyard. We seem to have 1000's. Still, it was making me nervous. If you recall, I had ignored itching for many Months before I was diagnosed with Hodgkins. Itchiness being a prime indication of Hodgkins. So I was getting nervous. I think that's quite common.

Tuesday, 8/22/06. Night.
Boy did I get wasted! It was nerves. Some people think I'm brave. My bravery comes from a bottle. I'm so paranoid that I have trouble sleeping. Some of it is my anxiety regarding death. Most of it is worrying about Dani. I hate to see her suffer. I hate the pain and anxiety my health can cause her. You could prove to me that Paradise awaits me after I die but I would not want to leave her because it would devestate her.

Wednesday, 8/23/06
I wake up a little hung over. I need to fast before the scan so I stopped drinking around 1AM(?). I can only have water 4-6 hours up to the scan. No food but worst of all, no coffee. Dani wakes me up, I slink into the shower and soon we are out the door and I'm driving to the Hospital. I'm discombobulated, to say the least

We get to the hospital and I head to the PET Scan Floor. Dani stopped me and we squabbled over which Scan I was getting. She shoved the order in front of me: CT with Contrast. It's a Full Body scan, of course. Fuck! What a horrible "surprise". For a review: a PET involves radioactive Sugar injected into a vein. Piece-o-cake. Full body CT scan with contrast means I have to chug @ a quart of chalky "berry flavored" Barium, get a Barium enema, and a Barium IV. All on an empty stomach.

Although the technician was a Jamaican Hottie, I had a hard time relaxing my butt muscles. I was so psychologically unprepared. Of course, after the 30 minute procedure I need to find a restroom and it's not gonna be pretty. I pass on the one right outside the scan rooms because of all the "activity" around it. The next one is a little more secluded and has been my room of choice before. And I think I've had 3 or 4 trips to our bathroom in a few hours of getting home. Just spewing radioactive garbage out my bum. It's a nice, milky-whiteish/yellowish fluidish substance. TMI? :D

On Wednesday I notice my legs itch around my ankles. It's diffuse and there appears to be no exterior source. Fuck. Now I'm concerned. I'm hoping it's psychosomatic. I try not to itch in front of Dani. She notices, with concern, everytime I itch. Again, I don't want her to worry. I try to ignore it. I kind of block it out.

Thursday, 8/24/06
I wake up and I fight the urge to itch my leg. Fuck. Sometimes it's the left leg, sometimes the right. Fuck. Fuck. Fuck. All my life I've ignored potential medical issues until they becom serious issues and I end up in the ER or under a Dentists tools and scowl. I'm done taunting death. I resolve to call my Doctor. But I don't want to tell Dani, yet. I want to hold out. Why make her worry if it's nothing? I wait nervously for her to leave. I hope she doesn't notice but she does. She can't put her finger on it, I can tell. When I first woke up she asks "What's wrong?" I explain it away that I'm tired. As soon as she leaves for work I look up the number for Lombardi Cancer Center.

They Patch me through to my Doctors Nurse Coordinator. I explain my itchiness, telling her I'm kind of freaked out about it. She is unaware that it is a symptom of Hodgkins and repeats "But I'm no Doctor" several times. I wonder if she's gotten in trouble before. Her lack of knowledge regarding Hodgkins Symptoms reminds me that She's "No Nurse", either.

How come Nurse coordinators can be so Fucking Ignorant? The one that worked for my first Dr. wasn't this stupid. My scheduled appointment after the CT was for the 5th of September. The Nurse asks me if I would like to come in tomorrow for peace of mind. I say yes and thank her. They squeeze me in for 1130-1145. Now I have to tell Dani and hope she doesn't freak out.

Am I Fucked?
Do I need to reinforce that this is kind of a major issue? That if they didn't kill all of the Cancer the first time around then my survival Stats plummet? That we are talking about a potential Bone Marrow Transplant with Chemo & Radiation.

Emotionally, I'm barely keeping it together. Cancer Sucks.

Near 5PM Dani calls to tell me she's walking home and was hoping I would meet her half way. I agree, reluctantly. I'm not gonna tell her about this while we are walking. So I meet her and we walk home. I ask her if I can get her a drink. I never ask her for a drink and later she tells me that this was a signal to her. I guess I need to over her a drink more often.

So, I make her a vodka/lemonade and I get a whiskey on the rocks. Damn I'm nervous. I'm so worried. We eat, we talk. We enjoy ourselves. God I love her with all my heart. At some point, right after Dinner I blurt it out:

Me: "I bumped up my appointment to tomorrow." (My voice is weak and cracks)
Dani: "Did they call you and ask that you come in?"
Me: "No. I'm worried so I called them."

Her response came without hesitation. I explained everything to her. Dani did not freak. I was surprised but it was obvious she was holding it in. I have never taken this type of initiative and called my Doctor with my concerns. And certainly not without telling Dani. She must know I'm extremly worried. This, of course, will cause her great worry. I knew at some point She would leave the room and call her mother. I hate upsetting her.

The rest of Thursday is kind of a blur to me.

Friday, 8/25/06
Dani wakes me and off to the Hospital we go. I hate going to G'Town Hospital. It brings back memories of Cancer and nothing else.

We get to the waiting room. SOP is for a tech to come get you from the waiting room, take your vitals and draw blood, then you wait for the Dr. Today, when the Dr. saw us in the waiting room, she came over and escorted us to a room. Vitals would wait. Fuck Fuck Fuck. I was worried before going in. Yes, part of it is paranoia. But again, I ignored my itching symptom for months prior to diagnosis. More months then I care to confess to. For once I would like to be worried and have my Dr. tell me I'm crazy. She grabbing us was not a good sign.

So in the room I described the itching, showed her a tiny fluid filled blister I found Thursday morning on my left wrist and described the pain/sensitivity of my left nipple. She informed me the CT scan showed abnormal growth in my Bone Marrow. This did not cause her concern. Most likely it was my cells still rejuvenating/recovering from chemo. Plus The Bone Marrow biopsy was negative. However, the itching was causing her some serious concern though.

She had me disrobe for an exam and told informed me she would schedule a PET Scan. Just as a precaution. Fuck.

it was a blow to my, and Dani's psyche. I was trying to keep my composure. Dani was having a little more difficulty. The Doctor turned to Dani, saw her wipe a tear, and said: "don't worry. He'll be fine." I just wish I could stop causing her pain. I'm not blaming myself, of course. But it breaks my heart to se Dani so upset. I don't know how to explain this to someone who hasn't gone through it. It sucks. You try not to worry about recurrences but you can't help it. And a recurrance is way more deadly then the initial battle. You kind of live in fear of a recurrence. To say it sucks is the ultimate understatement.

The rest of the day Dani & I kind of drifted through it in a state of semi-shock. I think. She went to work and I went to meet a friend for drinks. He lives in Towson, MD., just outside of Baltimore and came in to hang with a friend of his.

Dani & I were gonna return to the Adirondacks on Monday and backpack for 3-4 days. But we canceled. We need to know when the PET scan is scheduled before we can leave town. This shit fucking sucks.

Cancer sucks beyond fucking belief.

Peace.

Wednesday, August 23, 2006

I won! [C]

Sorry I've been away. lots-O-Crap Going on. I'll try and fill y'all in soon

I Hate Sleeve Badges. I've tried to avoid them. Everyone could wear a badge so what the Fuck is the point?

I go for a CT scan in about 8hrs. I hate thinking about it. I despise it. Going just brings back the memories. Memories of a bad dream. Do you know what that's like? It's been 4 Months. It's my first trip since I've gone into "remission". It's my first trip back.It sucks. I don't really use my car any more. I use it to get to the hospital or out of town.

I'm in "remission" but Dani is prepared for the worse. She doesn't want to be "surprised" again. She doesn't want to be blind sided by a bad diagnosis. I don't blame her.And I am confident that I kicked Cancers ass. But there is always that doubt. No matter how small, the doubt is there. Kind of sucks, no? I try to ignore it but sometimes it gnaws at me.But you know what? I may die tomorrow but I won. I met Dani. Fell in Love with her and married her. After searching for 39 years I found my perfect match.

I won.

Tuesday, July 11, 2006

I'm Married!!!!!! Viva Italia! [L]

Yay! I'm also not well. We think I'm exhausted and wasn't quite ready for this much activity. We have been going non-stop for over a week. I had an upset stomach Sunday which is probably expected due to the food & drink of Saturday's Bash. My hangover was so bad that I watched the Final Cup game at home with my new family. ;) Actually, I rather enjoyed watching the game at home while we opened the loot and wouldn't have wanted to be anywhere else!

VIVA ITALIA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Watching Italy go into PK kicks was nerve wracking as hell. They were 0-3 in world cup games decided by PK's including the '94 Final against Brazil. Watching that loss sucked beyond description. Watching the other games in DC bars is quite exhilirating to say the least. You have Nationals from the opposing teams in the bars along with American fans. The excitement is indescribable.

Anyway............After the game I became nauseas, chilled, feverish, and diarrheaish. Yum. I couldn't sleep well but Monday, the next day, I felt fine. So we meant one of Dani's dearest friends for drinks and socializing. Today, I fell nauseas, light-headed, achy, crappy. We leave for the Adirondacks in @36 hours. So, It's @2:30PM, I feel like ass, I'm going to bed.

I'll try to do a full wedding report on a later date.

Goodnight.

Wednesday, July 05, 2006

Will They Understand? [L]

It only comes every four years and they've done it 4 times in my lifetime. The first one doesn't really count; it was 1970 and I was only 3, 4 years before I would even start to play. Then I saw them beat West Germany in 1982 and watched a gut-wrenching, heart-breaking loss to Brazil in 1994.

I have no other sports passion like this. Remember how exciting it was when The US beat the USSR in Olympic Hockey? That fervor is matched in the Round of 16. The frenzy rises exponentially through the Quarter-finals, Semi-finals, and on to the Final. The bars in DC are packed with Nationals from the oppossing teams along with the American fans. I've been in Sports bars for most major US finals. The passion doesn't compare. Part of it may be that since it started in 1930 only 11 countries have made it to the Final Game and of these only 7 Countries have ever won The Cup

Now Italy is back in 2006. Almost like clock-work in my lifetime, every 12 years. They will be playing July 9th at 2PM..............July 9th. Dammit. I was reminded of this date during the round of 16 and was kind of worried. Back in January I had other things to worry about then The Final. Much more pressing.

So the World Cup Final didn't enter into the equation when we decided on July 8th as our day to get married. July 8th, 7PM. This is not a catered event nor is it in a rented Hall. We are doing everything on our friends Farm. I believe rushing out might not be an option the next day. And what about my new In-laws? They have a 6PM flight on July 9th. I've never met them before. They arrive tomorrow morning. Dani has watched Italy with me. She even got caught up in the passion during the German game. I think she understands. She even said it would be all right if I go to the game, without a prompt from me. But will her family understand? I'm still unsure of what I will do.

I think I'm more anxious about July 9th then the 8th. Does it get any easier?

;)

Sunday, July 02, 2006

I Have Eyebrows & Color! [C]

Looking Fabulous
How Long has it been? Sorry i haven't posted in a while, been busy. How long since my last chemo? I dunno. I'm getting married next Saturday, dammit! My eyebrows are growing back, still light but getting there. I'm so happy I'll have some for the wedding. My mustache stubble is sooooooo dense/thick now. For clarification, I lost the mustache more so than the rest of my facial hair during chemo. My body hair is growing back slowly. I'm so worried I'm gonna have way more hair than before, and denser to boot. But that is a small price to pay for survival, no? The hair on my head is pretty much back to normal and definitly thicker. Like I needed that! ;)

Last week I looked in the mirror and noticed I had color again. Such a weird feeling. So happy to see it. I usually have some color year round, it's my Sicilian half. But during chemo I was pale white. Dani is of the opinion that I was more Grey than anything. Seeing color in my face just made me feel so healthy, so alive. These little things I notice that make me so happy...............it's just different, you know? It's the little things that you notice after an ordeal. An ordeal I still try to trivialize sometimes............

How Sick Was I?
As I've said before, I didn't "look" unhealthy most of the time. I kept most of my head hair and gained weight during my illness. I went out, partied, and almost always had a smile on my face. Dani did the worrying while I put on the face of defiance, like all I had was a bad cold. Not flu, a bad cold. many people go into "seclusion" while fighting Cancer. I was immunosupressed but dared infections to try. Thank God for her. She still denies her role but she was instrumental in my survival. She's as humble as they come.

Tangent - the "tingling" in my left hand is gone for the most part, accept when I workout. More on that later...

Sooooooooooo, I've tried to get back in shape for 5 weeks now. I didn't think it would be this difficult but I guess that tells me how sick I was. This is more frustrating than anything I've ever encountered. I fooled myself in thinking this was no big deal. Some say it takes the same amount of time to recover as the length of ones fight. That means six months of recovery for me. We'll see about that, dammit!

Recovery Attempt
I decided I would walk/Hike Rock Creek National Park (RCNP) for my recovery effort. It's flat and relatively easy. Nice way to begin, no? i would wear my hiking boots and carry a pack, carefully weighed out, and do it 5 days/week. Wasn't sure of distance but I could keep track of time. I would Start at The P Street Entrance in NorthWest (NW) and head North. That was a 30 minute walk.

I estimated I was doing 2miles/hr through all this.

Week 1 - I walked from P St to Calvert St. That was 30 minutes in RCNP. Plus 30min to get there and 35 minutes to get home. an hour and five minutes. I was carrying about 6lbs. on my back. And it frikken hurt!!!! My feet killed me and my right ankle would swell up like I sprained it. WTF is up with that????

Week 2 - P St. to the National Zoo (Adams Mill Rd entrance). Total time in RCNP=1hr. It was still taking me about 30 minutes there and 30minutes to walk home. So now I was up to 2hours walking eachday. My feet still killed me. I would switch to sandels for my walk home from the Zoo. It helped a little. But still, my feet killed. By the time I got home I could barely walk.

Week 3 - P St. to a little North of Pierce Mill. Total time in RCNP, 1 way= 1.5 hrs. Round trip was @3hours and I was carrying 12lbs. I wasn't doing any better, foot wise. It was frustrating. I wasn't, IMO, pushing myself physically, but my feet and ankles were giving out. This Sucks! Three weeks of recovery and I couldn't push myself physically?????

Targeted for Crime - You think one would be relativly safe in RCNP, eh? But this is the city. One day, the day after grade school was out for summer recess, 3 kids on bikes pass me in the opposite direction about 15 minutes after I start my hike. Five minutes later they come up from behind me and ask me where the Zoo is. I tell them how far North it is and they continue on. I think about it. Young teens. Locals. On bikes. They don't know where the Zoo is? Bullshit. My Spidey senses started to tingle. RCNP foot trail follows the road for the most part. Other parts are isolated. Crime does happen but I wasn't gonna allow paranoia take over. I was wondering if they questioned me as a test to see if I was a local. The only out for me was at Calvert St. The only place for these punks to hit me was just after a foot bridge before Calvert St Entrance/Exit. It was a moderately steep hill where only other people on the trail could see, the road wasn't visible from there but it was a 1 minute "run" from there to get out of the Park. I decided if they weren't there then everything was cool. If they were, I might have to run for it. I pulled my phone out as I crossed the bridge. Coming to the end and starting up the hill I saw the 3 punks. They were "resting".

Two taps of the "talk" key and I was speaking to Dani. I started to tell her, very loudly, were I was and that I would see her in about two minutes. This confused Dani. She was at work. Dani has had to do this before. Call me because a creep was invading her space, either on Metro or while walking in our neighborhood. In all fairness to her, it confused her because I have never had to call her for this type of help. So I continued to talk to her as if she were waiting for me at Calvert St, no matter how much she protested. it didn't matter b/c the punks couldn't hear her. Soon, Dani caught on, just after I passed them. She started to flip out but all was good. I was in visual range of the exit and traffic, and there was a Park policeman within sight. The fuckheads passed me saying "we only have a little ways left for the zoo". For some reson I debated continuing on, knowing there were even more isolated areas ahead. Dani was upset that I would even think about it and I did the smart thing and bailed at Calvert St.

Still, my feet were killing me. The walking wasn't working. I neede something else. Something with low impact. To make a long story short - Dani to the rescue, again. She was able to get me in to her gym free of charge. At least for now. And as long as I show up with her in the Morning.

This may shock those who "used" to know me; I get up around 7AM and head straight for the gym. No coffe in me, no food. Who woulda thunk? NO COFFEE???? I used to not be able to take a shower without coffee!

So now we walk about 20 minutes to her gym, work out, go shopping at Whole Foods, and head home. We work out together on the Elliptical for 40 minutes. It's low impact, working legs, bum, arms. Very nice cardiovascular workout, wears me out and I sweat bullets through it. First week I worked out at Resistence Level 2. Second Week I worked out at Level 4. The last few minutes I go up "2 levels" of resistence. On Friday's I go up 4 levels of resistance. This past Friday I was very pleased to break 4miles in 40 minutes. This week, I'll do level 6. I'm still well above my comfort level for weight but hope to be back down to my pre-cancer weight soon.

The tingling "nerve damage" in my left arm become apparent when I work out. Maybe it will go away. Maybe not. It is, however, no longer a constant prescence. I just want to be my old self again. I don't fit into a majority of my clothes and its gut wrenching. Even though I know it was a 1000 times better to gain weight then to lose weight during my ordeal.......I just want to be myself again. I won't feel like I've totally kicked Cancers Ass until I have my old physique back. Until I can caryy 35-40lbs on my back for 8-12 miles, up 3500ft in a day. Then I will know for sure that I won. I will get there. And until then....


Peace.

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.

:D

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!


Peace

Sunday, May 28, 2006

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

5/26/06
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:
Impression:
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.

AntiClimax
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.

Peace.

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

5/13/06
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.

5/10/06
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?

5/12/06
Last blood draw. I guess they want to make sure my cell lines are recovering.

5/17/06
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.

FELIZE CINCO DE MAYO!!!!!!!!
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.

FELIZ SEIS DE MAYO!


Peace

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.

Sunday, April 30, 2006

I Feel Like Ass/Steroid Effects

DEXAMETHASON: Catabolic Steroid. Some Effects: Loss of Calcium from bones, potassium, protein, immune suppression. Weight Gain, increased appetite, salt retention, irritability, nervousness, insomnia, indigestion, fatigue, weakness. And Diverticulitis "may be a problem with this drug".

I think that steroid is as toxic as my chemo drugs. Explains why I can feel like I want to vomit and am hungry at the same time.

FRIDAY 4/28/06
Every Friday after chemo we would go to Whole Foods and get something tasty for my dinner. The IV of Zofran & Dexamethasone held off the nausea symptoms until at least the next day. No chance of that this time. By the time we started eating at 6PM (less than 2hrs after treatment) my taste buds were going quick and my stomach was starting to tell me things were not gonna be easy. I had to pop a Zofran right after dinner and lay down. If I was a normal person I might have vommited. But I really would rather not. I was exhausted and couldn't sleep. I attempted to go to bed around midnight, still feeling nauseas. It was too early for another Zofran. I was ready to pop some Sominex when Dani suggested Lorazepam...

FUN WITH LORAZEPAM
Lorazepam, Evil relative of Valium (Diazepam). Has a "High" addiction rate. Used for anxiety and for chemo patients to treat insomnia & nausea. I can use it in conjunction with Zofran. I have a 1mg script. The lowest dose is .25mgs. I used it 3 treatments ago for the first time. By the 3rd day I woke up feeling like a Blob-O-Jello that went on a bender. Feeling like that without the help of alcohol the night before sucks sooooooooo bad. I was a zombie all day. I decided the nausea and insomnia was a party compared to the Lorazepam and stopped taking it.

After my next treatment the nausea and insomnia was worse. reluctantly, I started back on Lorazepam. Took it for 5 days. My body seemed to adjust to it. Or I got used to the Blob feeling?

It still took some convincing on Dani's part for me to start up on Lorazepam again, but not much. I also popp a pepcid and some stool softeners, of course. I slept about 5-6hrs straight. Woo-Hoo.

Saturday
Wake up and pop a Zofran. I feel nauseas all day and weak. Don't think I did anything. It's beautiful out but I have no energy. I force Dani out into the night. A friend's Band was playing tonight and we said we were gonna go. I don't feel horrible but I can't drink, and I still have to worry about my Low Cell Count. The Chemo must have really helped that out. ;) I wasn't supposed to take Neupogen shots after my last treatment. The plan was to let my immune system recover on its own. but with low counts, the Fellow recommended that I continue on with it.

So I don't want to be around a lot of people in a smoky club. I get to stay home. yay. dani comes home smelling like a club. Man I miss that smell! Cabin fever is driving me crazy! I popped a Zofran and Lorazepam, pepcid, stoll softeners, and hit the hay.

I wonder if I could do the "Twelve Days of xmas" with drugs?

I sleep about 8-9hrs with only 1 wake up. Yay!

Insomnia is a problem. I rarely sleep through, waking up several times each night. All these drugs just wreaking havoc on me.

SUNDAY
I wake up alone at 1030. dani is at the Farmers market. I feel really nauseas and pop a Zofran. It won't help much. I don't want to go to market but Dani brings home a few bags of Free Fresh Food every Sunday. I go to help carry home the Loot. I'm almost making a conscientious effort to not vomit as I walk down to Dupont Circle. it's 15-30minute walk. Depending on how good I feel. Today was 30minutes. I get there and eat one of Lorries famous Blueberry Scones. Best Scone I've ever had. eric is always wonderful and, in Dani's words: "spoils me". At the end of market we fill up on lots-o-goodies and head home.

This almost constant feeling of nausea sucks ass. I will be so much happier when it's gone. Dani is still somehow feeding me 3x/day, with nausea and lack of taste and all. it can only get better from here, eh?


Peace

Saturday, April 29, 2006

4:18PM, 4/28/06

This might be a rambling, long ass one, but bear with me. I kind of feel like ass. More than usual. i will try to be entertaining as always. take your time. There are some necessary tangents in here. But I believe it will be damn entertaining!

4/28/06 9:35AM
We arrive at the hospital early. I've had only a few hours sleep and might be just a tad hung over. We have some Thank yous to hand off. 99% Of The Cancer Staff have been phenomenal. Incredible people with a gift of kindness like none I've ever seen. First we drop off a Card and cookies to the front desk people of the Lombardi Cancer Center. plus a personal card to my first Nurse Case Coordinator, Betsy.

Now we head off to the basement floor of Bles. My Dr. and her team have been relocated there. Dani is worried that it will tense, especially with Kim. i tell her not to worry and remind her: NO COOKIES FOR THEM!!!!!!!!

FUCK THEM - TANGENT I
Last Monday Dani called Angela who is the Radiology Coordinator at Georgetown because we were told we could schedule my PET Scan. Angela, who is also amazing, says she never got the consent letter from my Dr. as needed. the Incompetent fuck heads started the process a month ago, supposedly. Two letters need to be sent; one to my insurer and one to Radiology. This is done by my Dr.'s Nurse Caseworker and the Admin Asst., Kim.

My last PET Scan "approval process" begin in December and I finally got approval in late February with a Scan in March. This was also a Cluster Fuck in which Kim was involved with my first Nurse Caseworker, Betsy. we learned the first time who was at fault because Angela keeps records of all conversations. A CMA procedure I assume she felt is very necessary, for obvious reasons.

So Dani calls Kim and very nicely asks what the problem is? kim seems confused on the whole procedure and then informs Dani She doesn't have time today to draft the letter because she has to go to clinic. Dani Relays this information to me. I reply:

"I'm done."

Anyone who knows me really knows what that means. I say it politely and calm but I'm on the edge of pure evil hatred. I'm pissed beyond description and barely containing my sicilian temper. i tell her to get ready, we are paying them a visit. i jump in the shower and think. All I can think is what Kim said: "I don't have time today". it repeats in my head and I start saying "No. No She did not".

i get out of the shower and dani is worried. she's never seen this in me and she's not sure if we should go. she doesn't think it will do any good if we piss people off. i tell her "I'm not waiting 3 months for my PET Scan. Nothing gets accomplished by Phone, i'm going to do this in person."

We head to the Hospital. Dani voices her concerns again; "I don't think a confrontation will accomplish anything." I respond: "Don't worry. I'm done with Kim. I'm going to her Supervisor"

In hindsight, Dani's concern was amusing. it's usually She you don't want to mess with. I think it threw her Since it was I who was really pissed off and she's never seen me like that. I think Dani thought I might hunt down Kim and tear her a knew one. LOL :D

We get to the Lombardi front desk and I tell them "I can't seem to get my PET Scan scheduled, may I speak with Kim's Supervisor?" Five minutes later the Clinical Administrator, Phyllis, comes out and invites us to her office. We calmly explain everything to her and her eyes bug out when we mention the 3 month approval process for my last Scan. And I ask in the most subtle sarcastic way I can: "It is important to get these Scans on time, no?" She assures us that someone is screwing up, apologizes, and promises to have this resolved in 24hrs after She talks with all parties involved. And no, not having time is never acceptable.

We walk out feeling very relaxed. Kim's gonna get reamed and I'm so happy about it. We've been so nice to everyone I have no qualms about this at all. it needed to be done and we didn't need to be worried about when my PET was gonna be approved. I need the Scan right after chemo is done. very dangerous to discontinue chemo if I still have Cancer.

It takes two days, but Phyllis calls us with the news that all is taken care of and we Can schedule my Scan when needed. Taint gonna complain about that. God Bless her.
TANGENT I COMPLETED

We check in with Kim and have a seat. Med Tech Antoinette comes and gets us. We Love her. She draws my blood, takes my vitals, and then we wait. As usual, the Dr. is running late. finally a fellow steps in and does a preliminary. I discuss some newish symptoms.

*WARNING* TMI
My left hand is numb and tingles on occassion
My right hand is swollen.
I've had one decent crap in the last two weeks, the day before today, in fact. I've been crapping bricks, with some blood, and I went up to 6-700mg of the stool softener Docusate Sodium. i continued the Docusate for a full day after I stopped the Zofran. This caused me to have @8-10 unpleasent Movements each day for the next two days.

before last treatment I had a bloody incident which might have implied a hemmorhoid. My Dr. and I both seemed a little uncomfortable with the idea of a butt exam so we both agreed to see how things "progressed".

The fellow was only concerned with the possible neurological damage. since it wasn't severe he recommended that I finish my treatment. Thanks Einstein.
TMI COMPLETED

My Oncologist finally gets in to see me around 11AM. she was in a good mood and happy to see that I was about to "Graduate". she asked me if there was any other problems. When i said "No" she said, with a smirk; "No wrestling?" I blurted back "Oh plenty of Wrestling, just no problems."

WRESTLING TMI
This is an interesting communication "issue" The Last treatment I had complained of shortness of breath. The Dr. aske if it was resting shortness or during exertion. Dani and I play wrestle a lot and I exhaust quickly from that so i said "during exertion, when we are wrestling." The Dr. said "Wrestling?" I looked at Dani. The Doc is foreign. Dani decided that I might be using a euphemism. I wasn't. I just didn't want to embarrass dani so why mention the worse incident? it was a bad incident so i guess maybe I should have been straight forward.

Dani looked at the Doctor and said "Actually, it was while we were fooling around." DOH! It did look like I was gonna pass out after it happened. the Dr had a small smile on her face and I had my little shit eating grin. But for one of the few times in my life, I blushed a little. Dani's frankness blindsided me. the doctor approved me for a Pulmonary test after the PET Scan. Something else to schedule with the bag-o-incompetent shithead Kim.
WRESTLING TMI COMPLETED

The Doctors humor regarding wrestling made me smile like never before. But my lung capacity did seem better the last two weeks. we go back to Shitheads desk and schedule the Pulminary Test. It was rough. rough in that Shithead had to call the Pulminary tech and read the 'script verbatim. we then had a run in with the Nurse Caseworker who showed us a copy of the letter she sent to my insurer but admitted She didn't no Radiology needed one also. Oy vey!

It's @12PM now. we are late for my treatment in Infusion. we need to go to The BMTx floor and drop of cookies and a card for that Staff. We are kind of dissapointed my last treatment wasn't there but it probably, in hindsight, saved us some emotional blubbering. Almost all my infusion treatments were there and we became close. No one we recognize is at the front desk but the card has the 4 Nurses names on it that we dealt with the most. So we hand of the Thank You and run out.

Infusion Central: We hand off my chart to the desk and turn around to see Betsy. She Tracked us down to thank us for the card!!!!! Damn. Dani does most of the talking, tears welling up in her eyes. I say a few words and almost lose it. Damn it again.

I forgot to mention that my Absolute Neutrophil Count is low and to call the Doc for treatment approval. Apparently it's below the threshold where treatment is advise. Because treatment will knock it down more and I become highly susceptible to infection. And also my cell count may then be even lower for next treatment. However, I have no more treatments so I don't "need" to recover my cell counts in 2 weeks. i just need to be extra careful with hygiene. and if I get sick most likely it won't be worse than Cancer (knock on Wood). :)

So the wait is a little longer while they discuss my counts with the Pharmacy and then they decide to call my doc.

*NOTE* -TANGENT III
Vinblastine Label : "Do not remove covering until moment of injection. Fatal if given intrathecally. For intravenous use only." This warning is always attached to vinblastine syringes. A chemo drug with a similar name is delivered intrathecally, or in laymens terms: injected into the spinal canal. A healthcare provider, somewhere, inadvertently delivered vinblastine intrathecally. This proved instantly fatal to the patient on the recieving end of this mistake. OOPS. And thus they now know it's fatal through the spinal canal and now they have a warning label on all vinblastine syringes. This would be called an Iatrogenic Death. A nice way to say Death by Doctor/Nurse/Technician.

I remember "iatrogenic" from a report regarding an undetermined bunny death during my days at a Pharma Testing Company. They never proved I killed the Wabbit but the evidence pointed to an Iatrogenic "incident"! :D
TANGENT III COMPLETE.

Anyway....

At 2:30 I start treatment. the Nurse gets me with One Stick!!!! That is the advantage of the Infusion Nurses. They Hit me a lot better. First my anti-nausea meds. Then the Nurse does the two slo bolus pushes, 15 minute bleomycin, and then I get hooked up to the much anticipated 60 minute infusion of Adriamycin. Dani and I have been laughing all day. I'm working on little sleep and no food. And one point I go into my new laugh-no-air-intake routine and almost pass out. The end is getting near and we discuss the anti-climatic nature of this. i'll be done with chemo but not 1005 well. it's also anti-climatic because I've spent so little time in the Infusion Ward. we don't recognize the Nurse who delivered my drugs and she didn't recognize us.

4:18 PM: The Infusion pump stops. I note the time because it seems to be a milestone. From my beginning in the George Washington ER on 11/04/06 to the end of chemo at Georgetown on 4/28/06, 4:18 PM. We've been through a Lifetime, Dani & I. At least it seems to be a lifetime.

We walk out in our own little World, my arm draped around Danis Shoulders. She's quietly sobbing. I have tears in my eyes and I'm barely holding it together. I also have a smile on my lips. Today is one of the most beautiful days in my Life. The longest struggle of my life, for my life, is over.

In about two hours the symptoms will start. It will be by far the quickest onset of chemo side effects ever for me.

Friday, April 28, 2006

Fuck Cancer!!!!!!!

Hi. I be wasted so I'll go against my better judgement.

I've become a little superstitious.We helped a friend move tonight.

I also took a drag from a Cuban Cigar. Never had one before, how could I refuse? Wow it was smooth!

Anyway. tomorrow is my LAST chemo. I mean today is my last chemo. I'll probably start treatment in less than 12 hours. The last few treatments have been rough, as expected. I've had maybe 2 out of 14 days between treatments were I've felt perfectly fine. Taint NO Cancer left so the chemo wreaks havoc on my healthy cells/tissue/organs. Oh Fucking well. The difference between too much chemo and too little chemo is the difference between life & death. Fuck cancer! I kicked its Fucking ass! Fuck "remission"! That's defeatist. I'm done with Cancer. It's gone and it can kiss my ass! I will never see it again!

Do you know who I am? I'M RICK JAAAAAAMES Bitch!

I'm sorry. I need to give credit where credit is due:

Dani & I kicked Cancers ass! She kept me healthy. She made sure I ate 3 meals/day since this started back in November. Do you know how Fucking difficult it is to feed someone with no appetite for 6 months? Taint no picnic, to say the least. I wouldn't have eaten without her, I wouldn't have cared. And my ability to fight this Fucker would have been greatly diminished. She took over everything and gave me one job: "To get better". She worried about all other details of life. I might not be here if not for her. She put up with the worst I've ever given. She accepted and absorbed all those many days when I said; "Dani, I'm not well, watch out." Those were my words, in so many ways, that I felt like shit and I would probably lash out. I'm not sure if this was unique to me. It was like I would wake up and know. Know that I felt like ass and I could contain my anquish for only so long. So I knew and would warn Dani: "Things were OK now but I don't know how long I can hold it."

Yet There's not a single day we didn't laugh.

That's another thing I need to say about Dani. I look really healthy overall. I have an almost complete head of hair and I'm not under weight. My eyebrows are missing, but that is a small sign that something might be wrong. Some might think she is over protective about my condition. But she knows. She knows I look healthier than I am and that I understate my condition to any that ask.

Dani can read my face and I don't lie to her.

Example: we were at a friends house a few days after chemo. It was during the college BBall tournament, George Masons final game. I felt well enough to go out at the beginning of the night. Everyone was oblivious to my condition, which was to be expected. dani looked at me and I flashed a smile...........the smile. It is my full teeth smile, flashing my upper and lower teeth. It means all is not well. I was sick as a dog. Feeling so Nauseas that I could vomit on the spot. But I held it in. Leaving was not an option, unless I wanted to vomit. And I don't vomit, usually. So I wanted to stay seated in our friends house. i sat in a chair, kind of scrunched up, for hours. i just wanted to feel OK. you know what it's like? After a while we left and the first words out of Dani's mouth were: "You aren't well, are you?" No. But I held it in.

I can hide most from most but nothing from her. Still;

There's not a single day we haven't laughed. Almost every day we laugh so hard I think we are gonna bust a spleen. You know what I mean? that's the best laughter known to Humankind.

Good Spirits & Good food. Add a little chemo and all is Right.

I have my PET Scan in early May. But Fuck superstition. WE are DONE with Cancer. And It can kiss OUR FUCKING ASS.”

Thursday, April 20, 2006

Landlord/Tenent Battle

Dani got a rude knock on her door this past easter sunday. It was the new "owner" of the building with a Notice To Vacate. He's such a Fuckhead. Freaked dani out and I tried to calm her down. On Monday she brought the Letter to her Lawyer. The response:

"We are in receipt of your Notice to Vacate to the aboved referenced unit and find it a curious way to introduce a new landlord to the tenents. Nothing like starting out on a friendly footing."

The sarcasm and legal points get better after that. She ends with:

"Your Notice to Vacate can only be regarded, under these circumstances, as an improper retaliatory effort to intimidate our client. Please fax me evidence of your client's ownership of the building and DCRA registration. I shall therafter respond to your notice."

If I haven't discussed this before here; DC has the strongest tenent rights laws in the Nation. As one Real Estate Investor/Owner said to me: "In DC you pay, you stay." Dani's Lawyer is/was the Chair of the Lawyer/Tenents Association and the Biggest Gun in DC. I told my boss (at the restaurant I was working) of Dani's problem and he talked to her, who happened to be his lawyer. She wasn't taking anymore cases but was very interested in Dani's situation and scooped it up.

Some Lawyers actually have Souls. ;)

The trouble with Dani's apartment began in August.

Saturday, April 15, 2006

More Chemo -> More Side Effects -> More Drugs

The drugs I needed today to counter chemo:


8mg Zofran: for Nausea caused by chemo. I take two a day now for @7 days
4 100mgs Docusate Sodium: Stool softener. Need caused by Zofran
2 25mgs Diphenhydramide Hydrochloride: OTC "Sominex". For Insomnia caused by chemo
40mg Famotidine (Pepcid): For indigestion. Prophylacticly against Ulcers caused by the Steroid infused before chemo.

Another day i'll tell you about my 3 day experience with 1mg doses of Lorazepam, prescribed for insomnia. Shit Fucked me up!

my drug intake has increased gradually after each chemo.

Until then, peace.

Friday, April 14, 2006

No Chance For 100% recovery? Chemo Side Effects

Wow? Where have I been? Not sure. I'll try to fill in the timeline with lots of goodies. Right now I want to vent and whine. :p

4/14/06
I explained to the doctor that I experience a shortness of breath after I excert myself. This isn't the first time I noted this. The Fellow with her noted in an amazingly tactful way that I may be understating my discomfort. Honestly, no sarcasm in that statement. I was actually shocked by such an astute observation coming from anyone, much less a Fellow.

Reference Point: The Saturday Brandy dropped me off at the ER for my as of yet diagnosed Diverticulitus. I worked through the day bent over in pain. As she dropped me off I said to the effect: "I'm not sure I requires the ER, Maybe it's nothing to be concerned about?" I was less than a day from my Large intestine blowing out into my peritoneal cavity (almost certain death?) and spent 4 days in the hospital.

Reference Point: I don't remember how many days my right eye bothered me. Maybe a week. When I went to the ER I needed to wrap a towel over my eye. I had two Corneal Ulcers and I was hours from Septicemea. cause? Shitty contact care. by was that Optometrist pissed!

I wondered after each time whether or not I had learned my lesson. I guess not. But Third times a charm, no? :D

Back on Track
Soooooooooooooooooooooooo. My Dr. seems concerned about the shortness of breath. I feel like nothing is obstructing inhalation but I'm just not absorbing. Or so it seems. I'm not anemic. So She wants to do a Pulminary function Test after treatment. They don't seem to want to volunteer any information. This seems to be a pattern. Is ignorance bliss with Cancer patients? I don't work that way so I asked what might be causing this?

Dr. A: The Bleomycin (neoplastic Antibody)
Me: Oh. I'll recover?
Dr. A: No.

"No?" "No?" "No?"........................................Man that bugged the Fuck out of me. Why/How did I convince myself recovery would be 100%? I mean, outside the future chance of Cancer?

So, yes. I'm feeling sorry for myself. In the meantime Dr. A. reiterated that raddiation seems unlikely. They were concerned about the Lung Lesions but the sizes seem below the threshold. Irradiating the Lungs causes a 25% percent decrease in capacity!

So after getting home from chemo I started to re-educate myself on my chemo protocol.

Adriamycin "Can sometimes cause heart damage"

Fuck.

Now I'm really feeling sorry for myself. Dani to the rescue. she explains that Yes, Cancer Sucks. Once again, ALL Cancers Suck. And Yes, I may have some minor reduced functions. But why worry about future percentages and future issues? I'm alive and without the drugs I would be dead.

God I love her.

But I'm not at my past, especially right after treatment. I feel like feeling sorry for myself. At least for a short time. Then, after Im over it as usual, I'll look in the mirror, give myself the double Bird, and say:

FUCK YOU CANCER! KISS MY FUCKING ASS! "Damage/reduced function my ass!

:x

Below are the side effects, Short and Long Term.
Peace

Short term Effects:

Bleomycin: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), fever/chills after dose, cough, shortness of breath, mouth sores, itching, rash, loss of appetite; Less Common: confusion, faintness, wheezing; Rare: sudden/severe chest pain, sudden weakness in arms/legs.

Adriamycin: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), sores on mouth & lips; Less Common: cough, fever/chills, fast or irregular heartbeat, swelling of extremities, diarrhea; Rare: black stools, blood in urine, pinpoint red spots on skin, unusual bleeding, wheezing, skin rash/itching. Adriamycin may turn the urine red which is not blood and should disappear within 2 days.

Vinblastine: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), fever/chills after dose, cough, shortness of breath, mouth sores, itching, rash, loss of appetite; Less Common: confusion, faintness, wheezing, peripheral neuropathy (tingling & numbness in the hands and feet). Rare: sudden/severe chest pain, sudden weakness in arms/legs

Dacarbazine: Common: Redness, pain, or swelling at the site of injection, nausea, vomiting. Less Common: black stools, blood in urine or stool, cough, fever/chills, lower back/side pain, painful or difficult urination, pinpoint red spots on skin, sores in mouth and on lips.

Long Term Effects:

Bleomycin: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored).

Adriamycin: hair loss (alopecia) during use - hair growth should return late in treatment or after treatment, possible sterility (weaker than some drugs) and heart toxicity (doses should be monitored)

Vinblastine: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored), peripheral neuropathy (tingling & numbness in the hands and feet).

Dacarbazine: Some hair loss which should return after treatment, transient (shorter term) reduction in liver and kidney function.

Friday, March 24, 2006

Taste Buds, Hair, My Poor Laugh.

Fun With Food
Taste buds are back in full swing. Now if only I had an appetite! Last night Dani had her first Bee class. She invested in a couple of Hives last Spring. Now that She has some experience and questions, she decided to take a class. Anyway, she was gone for most the evening. I had to eat. If I didn't eat she would think that She could never leave me for long periods of time. It's so hard to eat when you have zero appetite. It's really hard when you have to make it yourself. So basically I ate last night so Dani wouldn't Yell at me. LOL! :D

Hair Emergency
I can't take it anymore. I haven't had a hair cut since October. Check out those photos on my webshot page. I might post some shots of the back of my hair today. Anyway, I stopped off at my hairdresser's Salon on the way back from getting a blood draw. I wanted to talk to her about it. Can't just show up for an appt. after 5 months, with thinning hair, almost no eyebrows, and say "Hey, got Hodgkins, can you fix my hair?"

So instead I did that today. The worse thing was I had to remove my hat for her to check out the damage. At first she wasn't going to bother with a cut until she saw how much hair I still had. She noted that it was very unhealthy and maybe a really short haircut would be in order. You really can't see it unless your close, but my hair does have a very "damaged" look to it. Kind of fragile/dry/frayed look to it. So I guees I'm getting buzzed by her next wednesday.

Where'd My Laugh Go?
Everyone remember my laugh? That loud, boisterous Cackle? 'Tis gone and maybe for good. I couldn't laugh for months because of the tumors in/arounde/on my lungs. Anytime I started to I would cough horribly. I mean I literaly didn't laugh for months. I stifled it if I felt it coming on. I can laugh now but it's different. It's kind of silent and I start to run out of oxygen. It's like I laugh as hard as I used to but it's muffled. It's kind of sad. If permanent then I think it's most unfortunate. Kind of like I lost a piece of who I was. A permanent reminder of what I went through. But still far superior to no laugh, eh?

Peace.

Thursday, March 23, 2006

Food Purgatory

3/23/06 - Chemo +6. Food sucks way less. I think I almost have full taste back. It's like there was a film covering my mouth before. Very difficult to describe. I expect tomorrow I'll have full taste capabilities back.

Wednesday, March 22, 2006

Food Hell IV. Plus a Few Other Rants. TMI Warning!

3/22/06 - chemo +5. Boy does food still fucking suck. I do think it might be a little less bland but that' it. My bones ache. I think it's a side effect from gthe neupogen. I tire so easily/quickly. My body hair is almost all gone. I kind of feel like ass. I sometimes wonder if it's worse than I can tell.......maybe I've gotten used to feeling like ass and have adjusted? My Kidneys hurt for a few days after chemo. I was warned about that, my system is trying to flush out the toxins and cancer/tumors. I'm suppossed to stay extra hydrated but it's become difficult. I don't like drinking liquids. Gatorade is a little too rough on my system....I'm on a pepcid script now to prevent Ulcers from the steroid. I take Zofran 2x/day but it bottles me up so bad I feel like I'm giving Birth when I have a "Movement"

:D

The Dr. suggested a stool softener. These are things I can't think of for myself. I've probably popped more pills in these last 5 months than I have my entire life. I'm not used to thinking: "This sucks, what can I take for it?"

The Zofran does seem to be helping with the nausea. Just wish I had an appetite and that I could fucking taste food.

I think some of my problems are due to the steroid but am afraid to ask that they cut back on it. I don't ever want to have a vomit attack like I did the day after chemo. Don't even want to come close.

Trying to be nice
First, I'd like to make it clear that I am guilty of what I'm about to rant against next. I understand being at a loss for words. And please, no one take this personaly. OK? My Biggest Pet Peeve now is hearing this:

'Well, if you had to pick a Cancer, Hodgkins would be the one.' or:
'Well Hodgkins is highly curable.'

Again, I've said something to the same effect. Years ago when someone's brother I know was diagnosed with Hodgkins. But I

FUCKING HATE IT WITH A PASSION!

I've heard it several times. Last time I heard it was from the Radiologist at my PET Scan. I even try and be nice. But anyone who knows me, knows I have a very expressive face and that I have a hard time controlling it. If I had to "pick"? Jesus Fucking Christ! Think about it. Why not say:

"Well, as far as autoimmunne/degenerative diseases, Multiple Sclerosis isn't that bad.

Ya git the gist? I have Cancer. I will soon be in Remission (Please knock on wood). They call it remission for a reason. I need Check-ups/scans for the rest of my life. The fucking toxins they're using on me are God Damn Carcinogens.

So please, don't talk to cancer patients about "Good Cancers" or "High Survival Rates". You know what I like? I like humor. I like being called Cancer Boy. I like people just treating me like I don't have Cancer. I like people not treating me like I'm any where near death. I don't mind people asking me how I'm feeling.

Am I being difficult? Oh well. I get to set the rules on this, dammit!

I would also like to apologize to the person for what I said about Hodgkins.

On that note:

Cancer Can Kiss My Fucking Ass and It's not going to beat me Ever!


Peace and I love you all.

Tuesday, March 21, 2006

Food Hell III

3/21/06. Chemo +4 days. Food still sucks. Liquids suck. I think I'm sorry I started keeping track. ;)

Monday, March 20, 2006

Food Hell Part II

3/20/06 - Chemo +3 days. Food may be sucking a little less but overall it still really sucks. Liquids also still suck.

Sunday, March 19, 2006

Chemo Causes Cancer

I'm on a roll today, eh?

Anyway. I kind of tucked it away that chemo can cause Cancer, maybe even Lung Cancer. At least I seem to recall reading that. Maybe it's radiation? I'll have to look into that......

Anyway. Vinblastine, a drug I'm taking for Hodgkins, can definitly cause Leukemia. That is a fact. Lets review:

Lymphoma is a general term for a group of cancers that originate in the lymphatic system. The lymphomas are divided into two major categories: Hodgkin lymphoma and all other lymphomas, called non-Hodgkin lymphomas.

Leukemia is a cancer of the blood or bone marrow characterized by an abnormal proliferation of blood cells, usually white blood cells (leukocytes). It is part of the broad group of diseases called hematological neoplasms.

Leukemia is clinically and pathologically split in to its acute and chronic forms.

Furthermore, the diseases are classified according to the type of abnormal cell found most in the blood. When leukemia affects lymphoid cells, it is called lymphocytic leukemia.
When myeloid cells are affected, the disease is called myeloid or myelogenous leukemia.

Myeloid cells are precursor red blood cells.

Is that not ironic? A drug I take to cure a lymphoma may cause another Lymphoma/Blood Cancer.

WHAT THE FUCK IS UP WITH THAT????????

I hope "they" get better at this. I might actually consider getting into this once I'm better.

TTFN!

Phil!

Food Hell. Part I

Food sucks right after chemo. Have I discussed this? Everything is bland. Not tasteless. More like a shadow of its flavor. I feel a little nauseas and I eat. But I never feel full. I think it's b/c nothing tastes great. Without the taste I feel unsatisfied. I also get a weird feeling in my stomach. It feels like a hunger pain and nausea at the same time. I wonder if its a thin line between the two when one feels "normal"? Liquids are also bland. I joke with Dani that we should get a vat of MSG for me. It really is indescribable, food sucking. It will go away but I never remember how long it takes. Maybe its gradual? so here's my countdown:

3/17. Day of Chemo - Food Sucks
3/18 Chemo +1 - Food still sucks
3/19 Chemo +2 - Fodd still sucking.

TTFN!

:D

Saturday, March 18, 2006

Med Techs Can Kiss my Ass!!!!! Please Stop in a Timely Manner!

Excuse the generalization but why are Techs so Fucking Cocky? And why do they suck at patient interaction? Probably b/c they don't get paid enough.

3/6/06
I go for my PET Scan. A tech with an ID that States he is a Student is gonna stick me. I tell him the same old story: "They're big but difficult" His response? "I can hit anything." Now excuse me if I'm being redundent but this shit hurts when they miss. It's a 22-24g needle and they thread it in there pretty deep. They don't do it right and it hurts. And sometimes they don't stop trying in what I would consider a timely manner.

So douche bag is eyeing a nice straight surface vein on my right arm. It's so misleading. No one can get it. I tell him that but he tells me not to worry. I say Whatever.

Douche bag does not stop in a timely manner.

His boss comes over and asks if there's a problem. Douch bag tells him "I'm moving my arm". What a fucking asshole! Classy blaming the patient. I give the boss a look. The "get this asshole away from me look." The boss takes over and nails a vein in my left arm. Then comes the fun. Radioactive Glucose. Yum. There is then a 45 minute wait for the glowing sugar to be absorbed. Cancer cells absorb more glucose and this is what the PET Scan..........scans for. My earlier CT scan detected "masses" but can not distinguish between active tumors or inactive residual scar tissue. Lymphomas leave a bit of scar tissue behind before "flushing out". PET Scan will only detect active/Live Cancer Cells.

In the scan you have too remain perfectly still. I only got a few hours sleep and you can't consume anything but water for up to 6 hours before the Scan. No coffee in the morning. Uhg. So I sleep through the 30-45 minute procedure. I think I stayed still. Afterwards a Radiologist comes up and takes a look at it. Her immediate diagnosis? "It doesn't look bad". Thanks, I say. She has no idea what I had before. How far the disease has progressed. her instant diagnosis probably means very little. Still I find her words comforting. really comforting. I guess I really wanted to hear some positive news.

Thirty Plus Days of Hell
Since we saw Dr Death on 2/6/06 Dani and I have been quite anxious. We never talk about it but we know what each is thinking. We are worried the Chemo isn't working. Or isn't working well enough. Worried that I'll need radiation. Worried that since I had Hodgkins IV that I may actually be part of the unlucky 15-20% that doesn't survive. This level of anxiety sucks.

3/8/06
My Birthday! I made it to 39! ;) My Dad only made it to 38. Died in a car accident. More tangents: My Mom had two miscarriages before I came along. Third times a charm, eh? I wonder how paranoid/stressed she was while carrying me? I was also born with ABO incompatibility. Hemolytic disease of the newborn. My blood did not match my mom's and some of it mixed with hers. She developed Antibodies against my blood. They made it to my circulation before and during birth and started to destroy my blood cells. I was given a complete blood exchange/transfusion shortly after birth. This was a new technique when I was born. Should I feel lucky? Should I feel like I'm on borrowed time? Well I don't dammit!!!!!!!

:p


I would like to celebrate my Bday. But I had chemo on 3/3/06 & Radioactive Sugar Goodness on 3/6/06. I 'taint feeling my best. Plus it becomes proggressively more difficult to recover from each treatment. The crap is accumulative. The treatment is aggressive, I get the same amount for each time. If there is less Cancer than there is more chemo around to attack healthy tissue. Oh well.

3/9/06
Our land line rings while I'm on the computer, right next to me. few call that line. I have a feeling it's the hospital but don't want to take it. Dani takes it with some trepidation. She sounds a liitle confused. she wants it spelled out. I don't blame her. She gets off the phone and repeats what she can:

The PET Scan was Negative. No Malignent Growth Detected.

I just sit at the computer. I ask her to repeat it. She does and adds "The Nurse said that was a good thing." I think we are just both in a state of shock. Dani sits down at the table, about a foot from me. I'm not sure if we even look at each other. Tears just start rolling down my face.

Dani saved my life. She did everything. She fought for everything, helped me keep a positive attitued and kept my nutrition level at a phenomenal level. Dani takes care of everything. says my only Job is to get better. She goes to every appointment with me. I could not have prayed for more support and love. And that is why I'm doing so well. it's not over yet though. PET scans can't detect every single Cancer cell. Every single Cancer cell has got to go. it only takes one. it only started with one. But a Negative Scan will mean no need for radiation probably. Radiation terrified me.

3/11/06
I finally feel well enough to celebrate my Bday, 8 days after chemo. We go out to Luigis. An Italian restaurant in Dc. Been around since the 40's. I have yet to find good Italian here. It's either Overpriced Shee-Shee food or chain food or crap. Luigis is a pleasent surprise. I expected to see an Italian grandma cooking back there. Best Italian I've had in ages. the Good news and the bottle of wine have us feeling really good. Dani was happier than I've seen her in a long time. I think I was too.

3/17/06 Day-o-Hell
Happy St. Paddy's Day! Or happy 9th treatment; treatment 1 of cycle 5. No party for us. we wake up late, suck one cup o coffee down and head out. I'm on edge. More so than usual. Maybe it increases for each treatment? I go for my blood draw. It gets delayed over some assinine communication problem between another patients paperwork and the admin unable to pronounce the word "Serum" well enough over the phone to the Doctor. "Serm". "Serm". Over and over. She has to leave the station before processing my paperwork.

I begin to pace and curse. Dani tries to sooth me but to no avail. it takes 20 minutes for me to see a Vampire. WTF????? I'm extra irritated today. Maybe because I still am nervous about what Doctor Death Prescribes? I get my blood drawn and am pleasently surprised the vampire goes for a previously unused vein. Off the beaten path is very nice.

The Doctor
Dr. Death sees us alone. Her Nurse is out of town. Such an awkward Dr. one wonders if they just see too much death. Anyway, she does a short exam and tells me the PET scan results were good enough that I'll be done with chemo after four more treatments. She didn't mention radiation and that's good enough for me. I tell her I'll need more Trimeth/Sulfameth and she asks me why?

Ohh boy. WTF? I tell her my last Dr. put me on the antibiotic before I started treatment and I assumed it was for prophylactic purposes. She says "Yes" as she's flipping through my records...pauses and states:

"I can find no record of you being prescribed this. Please tell me all the prescriptions you are on." I go through my short list. She responds: "Trimeth/sulfameth is prescribed as a prophylactic for PCP" (Pneumocystis carinii pneumonia)" I would never prescribe it for Hodgkins but can refill it if you want."

I decline the refill. PCP is very opportunistic but occurs in severly immunocompromised patients. Maybe my Old Dr. was being too cautious? Apparently, record keeping seems to be a bit lacking though. remember, I'm damn well positive he never prescribe anti-nausea drugs for my first treatment. regardless of the fact that the infusion Nurse should have known better than to give me chemo without it. Also note Cancer patient records are giant books. Must be difficult for another Dr. to take on a patient well into treatment.

I also tell her about the occassional skin blister that appear. They're very small and fill up with fluid. She's perplexed. the old ones I point out on my hands aren't in any "pattern" She says a pattern might indicate a viral infection and I would need to take acyclovir. Cancer patients need to be free of infection. She tells me if I see a pattern to come in but otherwise she seems to think it's not serious.

My Dr. also suggests I take Pepcid to prevent ulcers that may erupt due to the steroids I'm on. I tell here I take the occassional Zantac but dani asks for a prescription. Never would have occured to me. A 'script is only $1.00. Smart move. I'm starting to warm up to my Dr.

On we go to the BMTx floor, next building over. We get there and notice we don't have my chart. Dammit! Back to find my Dr. I told Dani the day was gonna suck worse than usual just after we left the Dr. the first time. One Nurse gave me an attitude with "Can I help you?" while I read a poster above her desk in the OPEN Hallway. Damn she's lucky she caught me completely off guard or I would have given her such an earful. I will be ready for her next time. ;)

Tweedle Dee & Tweedle Dum.....From Hell
I asked Dani to write this section but she's still very angry.

Two people come into our room to stick me with the infusion needle. They come in kind of arguing with each other. Both their ID's are backwards but I assume one is my Nurse. I've Never had them before so I explain my vein problems. The Older One (Dee) gives me attituted saying every one is different and don't worry. The younger one (Dum) seems a little apprehensive. They look at a couple veins and I tell them no on two. Dee tells me to relax. dani is getting annoyed. I tell them it's difficult to relax b/c I know it's gonna take more than one stick. They want to do the very straight Left arm vein. I tell them no. I get The "look" from Dee. But they settle on a vein I pointed out near my right wrist. They don't like it because it has a lot of visible valves. I tell them it's a good spot along with the one on the other side of the wrist. they try the first one. She opens a needle and I say "That's not a 20g, is it?" She says "Yes". "Oh no, use a 22g or smaller." The bitch rolls her fucking eyes and discards the 20g needle! She sticks.

They did not stop in a timely manner.

They argue some more with me and with themselves. They want to go for the misleading vein. I capitulate. One person has gotten that vein. I just want this part done. She sticks my vein. She tells me to relax. Several times.

She did not stop in a timely manner.

She tells me I need to relax. So it's my fault once again? They go back to my right arm. They want to do my elbow vein. It's god for blood draw but everyone else has avoided it for chemo. Too short, they said. Dee says it will be fine. Dani loses it here and I'll insist she rights this part:

So I look at Dani and see the anger in her face. I'm worried b/c I think this is my Nurse. Remember, I spend hours with the infusion nurse, up to 6hrs. I don't want her upset. She has the slow bolus injections and all that. I find out later that Dani knew this was not my Nurse. I need to pay more attention to these things sometimes.

I ask Dani "Are you OK Baby?" Dani replies "Yeah I'm fine". Dani does not look "fine". She's pissed. The cockiness, attitude, and unprofessionalism is a little much. She hates how much this hurts me. She knows how much this hurts me b/c she holds my hand when I get stuck. I notice Dee is looking at us so I try to ease the tension and say "Dani gets nervous sometimes". Not the right thing to say. it was misinterpreted by Dee to think that Dani was squeamish about the needle and was making me nervous. Dee responds with "Well maybe She should Leave then?"

OMFG was THAT the wrong thing to say!!!!!!!!!!!!!!!!!

Dani almost went apeshit on Dee. I think we were all lucky that they were on seperate sides of my bed. I'm trying my best to relax her, telling her it's OK. I still think this is my Nurse. I think Dani can see the worry in my face. Kind of pleading for her to not go off on "my Nurse".

Dani, red in the face, head slightly quivering in pure rage says, acidly, slowly with "I'm not going anywhere". it was annunciated in a way that made it clear what she really meant was "Suggest that again and I will jump over this bed and rip your throat out."

Dum went for the short elbow vein. I'm annoyed she stuck that vein but I want it over. I figure if there's any pain during chemo I'll tell them to stop and restick me elsewhere. Tweedle Dee and Tweedle Dum clean up, while still arguing with each other, and dum gives the last shot: "Too many cooks in the kitchen."

WTF? If I had known Dee or Dum was not my Nurse than I would have insisted on someone else sticking me. Dani would have told them to leave but she knew I might have potentially freaked at her giving "My Nurse" the boot.

All else went well. My real Nurse was a hoot and we laughed through most of the treatment. I did note the Nurse checked the vein more often then usual.

God damn overconfident techs. I'm not gonna take that anymore. Not even from Nurses. Only one Nurse has told me to relax. All others have been so careful and discussed options with me. I just try to be really nice b/c their job sucks. They have a lot of patients way worse off then me and I know they give the staff hell.

Oh and of course that one Nurse did not stop in a timely manner.

I think I am done being too(?) understanding to the ones that can't hit my veins. Oh well.

;)

Thursday, March 09, 2006

Breaking News: PET Scan Results!!!!!!!!!!!

3/9/06
Message received: PET Scan is Negative. Detecting no malignent growth (malignency?).

Not sure if that means I'm done or not. Any experts out there?”

I'm at a loss for words.

Friday, March 03, 2006

Dr. Death/Cancer Benefit/Nodular Sclerosis

Hi. Sorry it's been so long. I'm kind of wasted so before I forget y'all should watch this video:

http://www.metacafe.com/watch/69650/dont_you_want/

It's killing me. LMFAO!

OK. I'm drunk. If this post isn't coherent then I apologize. Sort of. :p

Update time:

2/06/06
I go see my new Oncologist. She doesn't have her case nurse with her. Basically, I think these nurses soften the blow. The Dr. explains we need a PET scan. If the Cancer is not gone then we need to try something else. It's obvious the Dr. hasn't really looked at my file too much. Maybe she's overworked. Both Dani & I get pissed off/frustrated with her.

"Try something else". I actually get flustered with this. I mean physically and mentally. Blood rushes to my face. I'm flustered. I'm positive Dani senses it and has never seen me like this. I'm really worried for the first time. I have doubt for the first time.

"Try something else". I believe that's a nice euphemism for radiation. I know I should think of it as just another phase of treatment. But I'm having a really hard time with it. My new Doc restated the Stats: "80% survival rate". I think she had to but I didn't want it. restating it bothers me. Worries me. Makes me contemplate my own Mortality.

I can't comprehend my own non-existence. I have axiety attacks or near anxiety attacks almost nightly. I usually need something to help me sleep.

Thank You, Dr. Death. I miss my old Doctor.

Drinking is an issue for up to a week after chemo. On those nights I rely on Sominex for sleep. all other nights it's Whiskey. I may be addicted to "sleep" aids but right now that's the lease of my concerns. I've gone through periods of my life less severe than this. Giving up "aids" has never been a problem. I mean, once I kick this fucking disease giving up sleep aids will be a picnic.

Nodular Sclerosis. That's the type of HL I have. looked at my file the last treatment I had.

Fuck this. Cancer can kiss my fucking ass. No known causes of HL. WTF is up with that? I've looked for HL clusters. No luck.

2/11/06
Day of the benefit. Day of the Fucking Nor'Easter. We've had 2 inches of snow so far and a Nor'Eatsre decides to hit the night of my Benefit? WTF is up with that? God Hates Me?

Dani and I go to Dinner and then to the Benefit at Asylum Bar. It's snowing hard. I figure all of my friends from the outer areas will not make it. SEIU & The Lymphoma Society are there. Dani and I are not on the "guest list". LMFAO!!!!!!!!!!!!! We pay full price to get in. I mean, 90% goes to me so why not?

:D

Surprise!
My Good friends Karin & Scott show up! They came from Outside the Beltway! Fought the Weather and showed up! I'm suppossed to mingle. I try. I don't know 90-95% of the people though. I tell Dani I feel the need to hang with Scott & Karin. It's been a while and they fought the weather. She is all for it. God I love her.

We stay as long as we can. Or I can. I tire "easily". I didn't want to leave before it was over but I needed to.

A Special thanx for Courtney & Lauren for organizing this. I may not express it well, but I am so grateful for your work and commitment. Dani & I are so grateful.

On another note, Clayton, Danis friend and now mine, played at the benefit with his daughter. She's 14 but sings way beyond her age. First heared a recording of her sing "Don't You Want Somebody To Love?" and was blown away!!!!!!!!!!!!

This has nothing to do with why I find that video so frikken funny!!!!!!!!!!!!

They played an amazing rendition of a pixies song also!

Thank you so much for coming and playing, Clayton & daughter!!!!!!!!!!!!!

2/16/06
Yay! Chemo day! Before I fergit: My hair is thin but not gone on my head. Refer to my webshot page. Half my eyebrows are gone, however. My eyelashes have "regressed" quite a bit and I have NO nose hair at all!!!!!!!!!

My body hair is way reduced, including my arm pit hair. TMI? No. I want to remember. My stomach/torso and arm hair is way reduced compared to my pre-chemo days.

Once again I'm "bumped" to the BMTx floor. I've had 6 of my 8 treatments in the BMTx floor. It's a curse and a blessing. I feel like the BMTx Nurses are less experienced than The Onco-Infusion Nurses when it comes to IV sticks. But you get a private room inBMTx as oppossed to the outpatient onco-infusion floor. And Cable. :D

So this Nurse comes in and tries to stick me. I feel pain like I've never felt. She tells me to "relax". I'm gripping Dani's hand so hard I'm afraid I'm going to break it. I've never felt pain like this before. Can you believe this shit? I mean anyone who has seen my veins would call them "Tubes". They're huge. They are still fucking huge even after all this sticking I've goten since diagnosis. Fucking hit them, God Dammit!

Anyway, Dumbass gives up after a while. She thinks she's hitting "valves". God she sucked at it but I didn't want to tell her that. Making her nervous is not in my best interest.

I'm Begining to really hate the sticks. the weekly blood draw sticks along with the chemo sticks. It all sucks. It just sucks more as time goes on. You think you would get used to it. But it's the opposite. It gets worse. You pray for a clean hit. I thank anyone that hits my veins and causes no pain.

She calls in a tech to stick me. He hits me near the wrist. No pain. I thank him but I don't think he understands how grateful I am.

Fucking Cancer Sucks