Wednesday, November 08, 2006
I'm officially diagnosed with Hodgkins Lymphoma, Stage IV. In the time of a weekend I went from thinking I was going to die in a few months to thinking I was gonna beat Cancer. I was "elated". Dani was still upset. I would find out later she was thinking I would be dead soon. And would worry about it for months.
And I'm not sure I discussed this before but Dani thought something went terribly wrong this day in 2005. They told us my Surgery would take about an hour. It took two. Removal of my swollen neck Lymph node was seriously complicated by the fact that it was pressing against my corrated(sp?) artery. So while I was fast "asleep" Dani was in the waiting room panicking. Thinking I had lost my life on the operating table. The things I've put her through...
It's weird to think back on this stuff. I have this euphoric type feeling. Life is good and it's so nice to be here. Words don't really describe it.
Saturday, November 04, 2006
1 Year ago today my Doctor sent me to the ER
1 Year ago today Dani & I were laying in my hospital bed in my private room. I had just been given a preliminary/probable diagnosis of "Lymphoma" and I/we were wondering if I had maybe a few months to live.
1 Year ago today I told Dani my intentions of marrying her and that I was sorry this happened.
1 Year ago today Dani told me she would Marry me right now if I asked.
1 year ago today I gave up cigarettes.
6 Months and 1 week ago I had my last chemo treatment and went into remission.
My wife Dani and I had a wonderful day today. Hope yours was well. A toast to all. Especially to all who have had to deal with Cancer. Cheers.”
Tuesday, October 24, 2006
This Morning we were out the door with a mission: Get some Cats. Those cats on my webshot pages have grown since their birth ca. 7/06 and we grew attached, feeding them everyday, even after we left. But they're Wild and only intensive training could reverse that. But what's worse is the Mother gave birth to another round a few weeks ago. So we decided to intervene.
Alley Cat Allies, in conjunction with DC Humane Society, have a Monthly free clinic where they spay/neuter feral/wild cats as long as you re-release them. The ear is "tipped" so animal control will know they have been “fixed” and there is no need to catch/euthanize these animals since they are sterile.
As one humane society employee explained: they’re just like city squirrels or rats. Wild and usually untameable. But very adept at surviving. And as we have seen first hand, feral/wild cats form colonies. Helping each other out.
But we had to catch them with traps provided by The Humane Society. They gave us four. It’s your basic(?) trap. A spring-loaded front that’s connected to a trip plate near the back. After “arming the front you put the bait (cat food) behind the trip plate in the back through the back door. You have to make sure you secure the back door otherwise a thrashing wild cat may break out.
Last night, we set a trap. We didn't feed them the day before and when I arrived with the trap one of the adolescence, Corky, came up, waiting. I put the trap down and entered our old apt. Within 10 minutes Corky sprung the trap! She freaked, as expected. We rushed out and covered the trap with a towel and brought her inside. Her moans were difficult to ignore. Her eyes made us feel guilty: “Why have you done this?” We had to convince ourselves we were doing the right thing. We set another trap and waited for an hour with no luck.
We didn’t want to do it but we left Corky, alone in the trap in our abandoned apartment. We still had keys. We couldn’t bring her in until 815AM the next Morning. Dani found it difficult to leave her and vowed we would be back at 4AM. I thought she was being crazy. We didn’t get home around 11PM. Exhausted. No way were we getting up at 4AM…….
The alarm went off at 4. Fuck! I was so tired. I wanted to rip the clock out of the wall. Dani hit snooze, a lot. Around 545 she had me up and drinking coffee. We were out the door by 6AM. We live 1.8miles (by road) from our old apt. We were there in no time. I set a trap and as soon as I walked away up comes socks. The other adolescent we were so attached to. I ran into our old apt and we waited. Corky was calm and in her cage. Within a few minutes Socks was in the trap eating but she wasn’t tripping the mechanism! Fuck we thought. But moments later she stepped on the plate and we had her! She didn’t freak as bad as her sibling Corky until I was hovering over her with another towel. I brought her in and sat her next to Corky. Now was the time they would both start moaning. Oy Vey was that unpleasant.
Now was the time for the big Fish. We wanted the Calico. She was the adult female breeder. We were somewhat positive that the new litter was weaned and it would be OK to trap the Queen of the Colony.
Tangent – it’s 623PM and Alley Cat just called for us to pick up the wild ones. We can’t. They misled us or mis-communicated some vital facts to us. Dani tells ‘em we’ll pick ‘em up in the Morning.
I set the third trap and head inside. In 15-20 minutes we get a response
Dani: Here comes another cat!
Me: It’s the Male (The Tom)
Dani: Dammit! We want the Calico! Make it go away!
This is so unexpected. We rarely see the Tom, he is the most elusive/skittish and wasn’t even considering him a target.
Me: He’s circling the trap. Why don’t we want the Tom? He’s half the “problem”.
Dani: we don’t have room for all these cats.
Me: We’ll stack ‘em if we have to
We couldn’t believe how successful this was. We were worried we wouldn’t get the adolescents, much less the adults. We were debating what to do with the Tom but He decided the issue for us.
Me: He’s in the trap. We gotta go with it.
Dani: OK. But if we get him he’s going to be a handful
Me: He’s eating the food….dammit! He’s eating, got one paw beyond the spring release but the rest of his body isn’t moving. He might eat the whole thing and not spring the trap!
Such amateurs. We watched him eat for what seemed like too long. Then, he moved “wrong”
Me: He’s trapped! Gimmee the towel!
I run down there to see one pissed off beast from hell. I double-check the backdoor of the trap to make sure it’s secure. It is but I’m still nervous. The thing looks near 15lbs and is as pissed as a trapped wild cat can be. All I can think about is if it gets loose in the car then we might not survive. It’s thrashing around, paws reaching out past the cage. On occasion it bites the cage. Soon, the Toms paws are bloody from its rage. Reluctantly, I bring the beast in and set our fourth trap. We want the Calico.
We wait about a half hour but nothing happens. We need to get the cats to the clinic between 815 and 900 so we decide to leave the set trap and come back. We’re worried about fitting in 3 of these traps into my Nissan Sentra anyway. I put the back seat down and load the Tom first. I jam him in between my seat and the back of the trunk. It’s an extra precaution to make sure he can’t get out. We then load the two young ones, cover all the cages and head out. We are near the 1300 block of Georgia Avenue and need to get to the 7100 block. It’s @730. We are expecting some morning traffic and some very upset kitties.
Just to be safe – I tell Dani that no matter what, if a cat gets out of its cage while we are driving then we bail, regardless of anything else.
They are silent the whole way. Must be shock. How nice for us. Would be perfect except for the smell of canned cat food filling the air. Ugh. I think we both fought nausea the entire way.
We get to the clinic around 8. We are first followed quickly by two more people. A not so happy women helps us process. The Alley Cat tech won’t arrive for another 15 minutes so a Humane person helps us. Again, a very unhappy Humane person. A not so helpful Humane person. Probably underpaid and under appreciated but still. I’m on @4 hours of sleep, Dani maybe 3. Tic-Tac-Toe could confuse me right now.
Then she drops the bomb: Tells us they’ll be ready at 5 and we’ll need to pick them up then, keep them in the cage for @24hours for recovery at our place and then release them.
We were told they would keep them for up to 36 hours then we could release them right after pick up. Assholes. OK. I’m being harsh. Maybe they’re hoping to cut costs but we live deep in the city and have a cat of our own cat that would not, under any circumstances, understand. Our cat was once feral/stray. It would rather eat a kitty than share its turf, caged or not, capisce?
So we nod in agreement and leave with no intention of picking them up today. Or if we do then we release them today. No recovery in a “safe house”. Under this program they only kill if they discover the animal could not survive release. So we aren’t worried about telling them when we’ll pick up the cats.
She also tells us if we caught the Calico then we have to wait until the next day to bring her in! Damn it! We want to turn in our keys and get our check from the settlement. We drive back to the trapping field and find an empty trap. We’re kind of relieved. Guess we’ll trap without the convenience of the old apt. We plan to try again tomorrow at the crack of dawn. We put the trap into our car and head home.
At home we find our Kitty in peril.
As soon as we get home Dani notices Annie is “not right”. And she’s right. On October 10/14 (Saturday), we had to take Annie to the DC Vet ER. It was around 5PM that she started to exhibit some weird behavior – trying to crap (or so we thought) everywhere and moaning. She would squat in her litter box and tense up. For too long. Then leave and find some corner to try and go. Then she vomited so out the door we went. Arriving at 815PM. I think we only waited 45 minutes. Much better than a human ER. Anyway she had a bladder infection. She was trying to pee, not poo. She also has a over active Thyroid and a heart murmur. The murmur may be secondary to the thyroid issue. They gave us some kitty scripts and we were gone. She responded almost immediately to the drugs.
Fast Forward to Monday, 10/23 and she is exhibiting the same symptoms. She’s done with her meds so we need to take her back. The ER seems quite busy, no one returns our call so Dani calls her regular vet and they squeeze us in for 11AM. Out the door at 1030AM with Annie. At this place, they want us to leave her for a while and take x-rays. Fine. They call us shortly after because the x-rays reveal some serious damage to her hip/thigh bones.
Dani: Yes. I got her as a stray. She had x-rays at your office in 2003, it should be on record. The last Dr thought she was either hit by a car or was severly abused before I got her.
Dani: I don’t know what it’s from. I don’t know how old she is. I got her as a stray.
Dani hates when she sees a new Doctor. It’s obvious they’re thinking Dani might have abused the Annie and I guess they need to explore that but it still sucks.
Around 4PM We go to pick her up. The hospital is on P St, NW. just off of Dupont Circle. I got find Parking. I drop her off and circle twice with no luck. It’s the beginning of Rush Hour/s so street parking is forbidden on P. I decide to stop in front and put my hazards on, car in gear and running. I don’t even see the fucking Meter Nazi until she slaps a ticket on my hood. Fucking Assholes! Snuck up from behind. I get out and say thanks and some other words. Arguing is pointless once the ticket is generated, its all computerized. It’s cold, my cars running and I’m in front of the animal hospital. Could she not just tell me to move on? No, that would be the decent thing to do. They wonder why they’re not liked.
Luckily, I’ve got time to fight it, maybe at least get it reduced.
I’ve got a ticket so might as well park there for real and head in. Just in time for Dani to be finishing up. Home we go but Dani is “not right”.
Kitty has an enlarged Lymph node in her Lung and an enlarged Liver. Her Kidneys may be failing. We’ll know more Later. Meantime, two vet visits, drugs, future radiologist diagnostic and $100 Parking fine has cost us nearly $1000. And Dani is convinced, I’m sure, that she needs to make The Decision regarding Annie. Not from cost, for those of you who might not know my Wife, but from medical issues that will only get worse and the quality of Life deteriates. She Loves that cat more than anything but she won’t let her suffer needlessly.
And we are supposed to go camping this weekend with nearly 2 dozen people from thebackpacker.com. I’ve met a few of them and was so looking forward to meeting more. And I so needed to get out before winter ends my 3 season backpacking. I’ve had a string of trip cancellations in the last year and a half and each one I cancel hurts me more. It’s like bad Cabin fever, depression and all that fun stuff. Dani knows this. But money and looming Decision makes this trip unlikely. Going away knowing this might be her last week is just wrong. Dani might be willing to go on this trip for my sake but I certainly can not take her from what may be Annie’s last week.
‘Scuse me, Annie’s vomiting froth right now. Okay. She’s in my lap and purring. She just wanted attention. Whenever Kitty what’s to be in one of our laps (which is whenever a lap is formed), she comes up to you, sits upright, and lightly claws your knee without scratching. It’s an impressive display of control. So, to continue, we stay home and hope the decision is not needed. I certainly will have no regrets, capisce?
Dani wakes me at 530. ugh. Out the door by 6ish to set the 4th trap for that Hussy. We set it and return home. About 745 we head back. No hussy. The food in the front of the trip plate, just inside the trap, is untouched. Crap. Maybe she’s trying to keep her kittens warm? I think it dropped under 40 overnight. She might have been “almost trapped” before. They say once a cat is trapped or escapes a trap attempt it will never fall for it again.
We close the trap and put the food in a dish on the ground. We don’t want to trap her after we get to the clinic and then have to keep her in it overnight. Off to the clinic to pick up her family. We get there, throw them in the car and head back to our old apt. Once again, not a peep or a movement from them in the car. From these inactions I make an erroneous assumption and bring them up to the yard from the car without the towels covering the cage. The Tom flips out worst than when we first caught him. He thrashes back and forth in his tiny cage. The power of his hits are impressive. I almost believe he could break out if given the time. He looks up at me as Dani frantically opens the back door, risking her fingers. His nose is bloodied from the thrashing. I’m actually worried that he might attack once out.
He’s out and in one bound is on top of our neighbors 6-6.5 ft fence and out of sight. I would say he was gone in 1-2 seconds. Corky and Socks are freaked out but not as bad. They head towards the roof of the neighbors car port. Dani fills two bowls with canned cat food and Socks struts nonchalantly back to the yard for some eats.
I heard we would still be friends. It was nice to be reassured.
*NOTE* - I don't have pictures of the Tom. He was way too pissed of. But he looked just like the black and white except his paws and nose was bloody from trying to bust out. #&%!$er scared the #&%!$ out of us.
The Horrible Truth About Their Names
We had to name the Colony: Belmont
Black Adolescent with white lower legs/white chest: “Socks”
The all Black Adolescent: “Corky”
We had to name the Colony for the clinic program. We had to name the kittens but we didn’t want to get to close. Hence the lame name “socks”. Corky just came to me. She seemed a little slow, her eyes set a little too close together…..remember that show Life Goes On? Yes, I’m a horrible person and I’m going to Hell.
But I’ve got a Kitty in my lap, purring and pawing my left arm so I’ll stop typing and pet her. If I stop typing and raise my hand from the keyboard but don’t pet her then she’ll form a scoop with her paw and drag my hand to her chin that she just made available by lifting her head. How cool is that?
Kitty says: Life is Goooooooooood!
kitty enjoying some of my whiskey on our ex-futon at our old apartment
I agree with Kitty
Have I discussed this? Our Lawyer settled our dispute with the new landlord of our old building. We get out within 30 days (by 10/25) and we owe nothing. We take the deal, of course. So we get back all our rent that we put into escrow minus our lawyer fees. She was more than generous with us. I think she felt bad. On the itemized list was .5 hours for consultation. That was well under the actual time. She took about a 4th of our escrow money. So you could say our settlement was 3/4ths of a year rent free living. Not so bad considering we had no legal standing. To reiterate: in DC you have to show cause to evict a tenant. Otherwise you pay to get them out. The stubborn ones anyway, and that’s what we were going for. Often it’s in the high 5-figure area. But the new owner only owned that one building in DC, a 4 unit building. If it was a 5 unit building, or if he owned more than one building, then we could have stuck it out. But the one “loophole” (from a tenant view) allows single building, less than 5 unit owners pretty much free will to do as they want. It’s kind of understandable, they want to protect the small businessperson. But it sucked for us.
We tell our Lawyer that we are going to keep the keys for a while in hopes of catching the feral cats. Once we turn in the keys we get the check.
Friday, October 20, 2006
All We wanted Was To Transfer Our Service.
This is a tale of complete incompetence, starting in September and ending Yesterday. This tale encompasses screw ups on the National and Regional Level. Some of this is second hand from Dani. In the final days we often handed off the call to the supervisor out of frustration. In fact, I think we both talked to just about every one.
And Let me clarify one more thing: We could have gone to WiFi as soon as we moved. Two things made us hesitate: 1) The laptop is not ours and we would have to buy an adapter. B) We did not want to pay a penalty fee (~$100 maybe?) to end our DSL contract early.
Disconnect Verizon landline. We have two Sprint cells and don't really use the landline. They set up the number as a “Dry Loop” for our DSL and assure us it will be a seamless. Transfer. I won’t go into details on that but it didn’t seem “seamless” to us.
Inform Verizon we are moving. Need DSL transferred to new apt (apt address provided.
We are Informed we will have service no later than October 2nd (from billing) and the transfer will be "seamless".
After that deadline passes we call. Told they can’t hook us up until October 12th. They need to “test the line”. Seems someone made a mistake somewhere. We are slightly annoyed. They give us our new dry loop number.
Dani Receives an email stating DSL up. Mistake. Order still “pending” according to tech support.
Receives an automated phone call that DSL is up. Ignored
No DSL. Call to tech support, run tests. Their system show we have DSL. I assure them we do not. Our modem DSL light is flashing green and we have no internet light. Troubleshooting on my end shows everything is connected properly but we are not connecting to any network. I assume their diagnostics say something similar, minus the connectivity. Of course I learn quickly that assuming anything like this with Verizon is a mistake. They tell us a tech will call us on the 13th
Miss call from local tech. The caller leaves a message to call the 1-800 number. I immediately call back. Tech support confused. Sees that we have two accounts: The old number & the new number. Tells me I have to call Billing and straighten it out. In the meantime since I missed the call they have to start a new “ticket” and I have to call back after 6PM to start the process all over. I respond: 'WTF?'. he says its 'Corporate Policy'.
Nice to know I should take my phone to the crapper with me.
I reply in a not so pleasant tone:
‘We will not start the process from scratch. This is Bull#&%!$. We could get WiFi and certainly refuse payment for Verizon internet this month since we haven’t had access and we can certainly refuse to pay any early disconnect penalty since you can’t provide us with the service. And I’ll be sure to send all this info to the BBB. Let me speak to your supervisor’
After 15 minutes or so on hold I get a supervisor. I relay all the above History and repeat my my little speech. I then add: ‘I’m the nice one. My Wife is gonna be Livid when she gets home.’ My tone seems to be much worse. He asks me if anyone had discussed the possibility that a tech would have to come to our house and when I could time would be. I said no. nor did anyone tell us that we needed to answer the phone. Seems something was incorrect on the “Ticket”
#&%!$ing incompetence on every level.
All he can do is send a ticket ASAP but we probably won’t be seeing anyone today since their schedules are probably already set and the techs are on the road. He’ll send the ticket for Saturday but he’s not sure that our regional office works on Saturday.
Great. Thanks. He then says what becomes an infuriating line to hear from them: "Is there anything else I can help you with?"
Saturday, we hear nothing. We aren’t surprised.
Verizon calls in the Morning to inform me someone will be stopping in before 7PM. This is the important call I missed on Friday? They call me to tell me someone will be coming by? They need to hear my #&%!$ing voice the day the work is scheduled? What kind of #&%!$ing bull#&%!$ is that??????
Of course, No one shows up. After 7PM Dani calls verizon to ask: What the #&%!$?”. Verizon informs us the tech who was scheduled to stop by was calling the dry loop number all day trying to get a hold of us.
Calling the dry loop number? How incompetent is that? They’ve called my cell number twice to set up a visit and the tech calls the dry loop number? All day, mind you. Call the number and you get an automated message saying the number isn’t in service. Complete moron.
Dani asks to speak to the Supervisor. After waiting for about 10 minutes she gets disconnected. I call back and wait. I get connected and go through the spiel again. But I tell him we will discontinue service. Then Dani takes over.
Good Cop Bad Cop
The Supervisor assures Dani 3 times that we will have service on Tuesday, October 17th. He will Flag the ticket. I’m so done but Dani wants to try.
I get a call from Verizon dispatch supervisor: ‘Due to inclement weather and a problem with our system your ticket was misplaced and a tech will not be out today. Would tomorrow be acceptable?’
Her: What time this week would be acceptable?
Me: No time is acceptable
Her: How about Saturday?
Me: I’m sorry, you don’t understand. I’m done with your incompetence. One of your techs tries to get a hold of us through our dry loop number and now you screw up another ticket that was flagged? What kind of morons work for you? I want a tech here today or we cancel our service.
Moron: I understand and am sorry, Sir, but I can’t guarantee a tech for today.
Me: That’s a surprise. Then I want to cancel.
Dani: Give me the phone.
Dani: Ma’am, we were assured by a supervisor that a tech would be here today. The ticket was flagged.
Moron: I understand. But as I explained to your Husband, Blah blah blah.
Dani: Well then I agree with my Husband, you’re all completely incompetent. I wish to cancel my Service.
Moron: I’ll transfer you to Billing.
Dani gets on the phone with billing and tells our story for the umpteenth time. Billing is looking at our records and is “appalled”. She credits our account 3 months and transfers us to Customer Solutions.
Customer Solutions is looking at our record, including, I believe, all the phone calls and is quite unhappy. She puts Dani on hold while she contacts our local Tech “Support”. She gets back telling us she had to go through 3 supervisors before one told her: ‘The Ticket is open. Someone will be there today’. She seemed a bit frustrated, also.
She makes us a deal. If someone doesn’t stop by today we can cancel our service tomorrow and they will waive the penalty fee for ending the contract early. What the Hell. We’ve got a couple of hours to go and we don’t need to hold our breaths. Fine.
The Hours pass and nothing happens, as expected.
October 18th. 0827
Someone calls Dani’s number. I ignore it but am hopeful because at this point it’s comical. Dani checks her voicemail on speaker phone.
You might be able to guess who called but I’ll bet anything you’ll never guess what the message said……..
Are you ready?
‘Welcome to Verizon DSL Service. We hope you received your Kit. If you have any questions feel free to call us at 1-800-whatever.’
ROFLMFAO! No #&%!$ing joke! Or maybe it was? Anyway, later that day Dani completed the cut. At Noon I bought a wireless adapter.
We have all the names and employ ID’s of the Supervisors we talked to. We have confirmation numbers for our credit and the waiver for the cancellation fee.
Verizon will be getting some mail from us. Along with a record of our minutes on the phone with them. Ever been on hold waiting for a Supervisor? I think they have a minimum time to keep you on hold in hopes of making you go away. God Bless speaker phone! And Whiskey! Still, I lost track of how many times we did that. Suffice to say, we are done with them.
All we wanted was a transfer of our service.
Sunday, October 01, 2006
OK. Mono sucked ass but I think I beat it early. I first noticed symptoms on Monday, 9/4. Sore throat and fatigue being the big two. And fever. By friday, 9/22 my sore throat was gone. That's 2 weeks and 4 days? I've heard 6 weeks for symptoms to go away. Man, that would really suck. I hated swallowing. I mean, it really sucked. I had a hellish time staying hydrated. Who wants to drink water when every swallow hurts? I learned to not swallow unless I really needed to. Think about it. Sometimes you just swallow.
Or has everyone had Mono? For those that haven't. You're frikken Lucky. Is this odd coming from someone who just beat Cancer? Perhaps. Dani says I was more miserable after chemo and I trust her. But Mono sucked. I had no desire for anything those 2 weeks and 4 days. All I wanted to do was sleep and not feel pain when swallowing. That was it. Period. I slept 12-18 hours/day. I would wake up semi-delusional. Unrested. I was kind of freaked out that I wanted nothing else that whole time. It was........unique in my experiences. And Frightening. I've never been so knocked out for so long. Although it did make me realize one thing: I wasn't an alcoholic. I drank nothing in that time period and didn't miss it a bit. I was starting to worry about my consumption level until then. ;) :D
On Monday I go see the Doc and get some blood work done. Maybe they'll give me the all clear? If I beat it in under 3 weeks then I must say, my immune system kicks ass! But I couldn't do it without Dani's care. God bless her. Again, I get sick and she just takes over. Giving me the best chance there is to a speedy recovery. Of course once I was diagnosed with mono we put kissing on hold. I haven't really kissed my wife in weeks. That really sucks ass. On occassion we slip up. But God forbid she gets it. We even got another tube of toothpaste so no mixing would occur.
On another front - just before I was diagnosed with mono we went out to dinner with Eric & Lori. I knew I was ill at that point but they invited us to Nora's. High end all Organic Restaurant in DC. Couldn't say no. At one point, I reluctantly(?) tried Eric's Brandy. We told them I had something but they said 'go ahead, the alcohol will kill anything.' So far, they are "clean". But I feel so fucking guilty. Mono, EBV, can lie dormant. I knew better, even though I wasn't sure what I had. You never know what you have. I think that is the moral of the story. If they come done with EBV then it's all my fault. That sucks ass. I'd rather have EBV for months then give it to someone b/c I was stupid. Especially them. They would do anything for us.
It's 1:30AM EDT. Our Movers come at 8AM. Since I have Mono we thought this was best. Besides all our friends being out of town........until my Dr. says I'm clean, I have Mono. One has to worry about Liver/Spleen rupture during Mono. No contact sports, NO lifting. If friends helped us move I would feel compelled to help. I really need my Liver. One can live without a spleen but it really is in your best interest to keep it. Plus any ruptured organ can be a kind of life threatening situation. We pay Movers and I won't feel compelled to help them.
But we are losing our internet. Verizon sucks ass anyway so no big deal. We have WiFi but no card. Yet. We need to buy a card. Until then, no internet. But the place is really nice. It's a basement apartment but that doesn't do it justice. The back is almost at ground level. The windows give it almost as much sunlight as our current fully ground level apartment does. And overall, it's nicer than our current apartment. It's deeper in the 'hood but way nicer. It's further away from all the fugly/condo/gentrification shit.
And it's ours. This place was Dani's before I moved in. And it's kind of sad. I proposed to Dani in this apartment. And we got rid of the futon she was on when I proposed. But nothing physical lasts forever. And there are a lot of bad vibes associated with this place. So tomorrow we start our lives again, in our place that we picked out together. I'm very excited and so is she.
So, until we have an internet connection: Peace.
Friday, September 15, 2006
Kind of ironic that EBV is often associated with Hodgkins but in my case it seems like my Hodgkins is associated with EBV.
I can handle most of the symptoms; loss of appetite, fever, depression, weakness, fatigue, muscle aches. The sore throat sucks beyond description. Especially when I wake up. I try so hard not to swallow. The pain just spreads from my throat to my ears. Never felt anything like it. I use a throat spray every 2 hours and pop ibuprofen as often as possible. Sweating this out sucks. Nothing I can do but go to a High Protein diet in order to boost my immune system.
One of The biggest concern with EBV is swelling of the spleen and liver, with possible ruptures. meaning I can do no heavy lifting. We move in 2 weeks. Dani had to spell it out to me: I'm going to be useless for moving. FUCK. I feel worse for Dani then myself. 95% of my life I've been healthy. 95% of the time Dani has known me I've been seriously ill. I think the stress on her is worst than on me. All I would like to do is take care of Her and here I sit, once again too ill to be of much good to anyone.
Keeping up my spirits during my Hodgkins fight was easy somehow. Now I just feel too tired.
Wednesday, September 13, 2006
But gone might be the days when I bragged about my immune system. How depressing...
Is that worth $800,000? What a dumbass.
Friday, Sept 8. Dinnertime.
The Asshole won't stop knocking. Dani finally agrees to allow me to answer it. It's gonna be the same old fight. the Fucktard thinks because he bought the building he can come over anytime to "take measurements". Forget the numerous building code violations. He just wants us out so he can convert to Condos. Shithead has never asked for rent or for a new lease. he refuses to go through our lawyer. So we don't let him in, ever. That's our right. Today he came by with a letter:"This is to notify you that the keys to the main building and the respective units will be changed by the owner of the building, John Fucktard, on 9/11/06. If you are not tresspassing and you are a legal tenant, you may pick up a set of keys from the Landlord's attorney at the address below:"
In effect an attempt at intimidation and wrongful eviction. I read it and then went ballistic. John Fucktard is at least 6', 250-300, of African descent. I was in his face screeming at him and jabbing my finger in his face. Much to Dani's amusement, the Man started to cower. :pThis was not the first letter threatening to change the locks. We also got an illegal "notice to vacate" letter from the Fucktard. he always comes over on the weekend after hours. One time it was Easter Sunday. I want to do this man some harm.
Dani sent me away, afraid I was gonna smack him and started to talk to him. That accomplished nothing of course. He has no respect or concern for us. A letter off to the Lawyer and we sat. Unsure if we wanted to sweat this out anymore. We've been fighting with several assholes on and off since August '05. So tired of the stress and anxiety. Saturday Morning our Lawyer emailed us back screaming bloody murder, threatening a wrongful eviction suit.
Monday Morning. We don't have to wait long. Two large Men come out of a van with drills. Followed by Fucktard. Dani call's 911 as I head out the door. I tell the Men to step away, the cops are on the way. they have no idea whats going on but decide it would be best to go back to the truck. Dani, on the phone, reports that some men are breaking into our building using drills. :DFirst cop car shows up in minutes. A second one a few minutes later. Long story short - we allow him to change the front door lock to the building. That is his right. The cops wait until its done and see that we get keys.We've been fighting for this place since August 2005. This Fucktard has owned the building since last March. Unfortunately for us, he owns no other buildings in DC. It's the one loophole in rent control laws. We can't win.Over the weekend we found a place. Deeper in the 'hood, not yet gentrified.” Away from all the Condo building. For now.
Saturday, September 09, 2006
PET Scan Negative. Still some increased uptake but Bone Marrow almost normal again. Jesus Fucking Christ that sucked monkey butt! the abnormal CT scan, the itching, spiking a Fucking fever or two. I was so worried. So worried about the worst case scenario that I didn't discuss it with Dani. I wasn't sure she knew all the consequences. And I didn't post it here for that same reason. we discussed it afterwards. She was there with me all along. How silly of me to think other wise, eh?
I was sure they had missed it in the Bone Marrow. I had asked them to take another biopsy at the end of treatment but they assured me that was not neccesary. So I sat there, worried. Survival odds suck as if they didn't get it all the first time around. With Hodgkins I had maybe a 40% survival chance. I would need chemo/radiation and a Fucking Bone Marrow Transplant. We would have to find donors. I would be in the hospital, in near quarantine for 6 months or so. The Anxiety was almost too much. I'm thinking this gets easier, no?
Pissing off the Gods
I've bragged too much about my Immune system. As stated earlier, Two days after my Pet Scan (10 days after my CT Scan) I started to feel not so well. fever, sinus pressure/headache, dizziness, loss of appetite. The symptoms are still with me. They come and go like my body almost shakes it but not quite. Never been in this position. Never had trouble with an infection. Whenever I say stuff like this Dani says: "You've never had Cancer before".
The Most Wonderful Women In The World
We have had to cancel our trip, twice. Once because of our nervousness over the PET Scan results. And this past week over our living situation. It's getting ugly or could get ugly and we have to leave ASAP. But Sunday I woke up and there was a note attached to a wad of money. The note said:
'Baby, why don't you go to REI, get what you need and go backpacking for a few days. I'll miss you but I love you and know you need this.'
I didn't go. Didn't want to anymore. There will be time for other trips. In the meantime we have to deal with the new owner of the building. A Prick From Hell.......
Friday, September 01, 2006
Got a call from my Dr.'s Nurse Coordinator on the 30th asking if a Scan on the 31st at 3:30 was OK. Of course we accepted it and it was nice that we didn't cancel our trip for nothing. Kind of sucked having it in the afternoon as oppossed to my usual early morning appointments because you have to fast for 6 hours prior, only water allowed. I'd rather sleep through that. Forty Five minutes into my fast, feeling groggy, I pop one of our left over wedding mints into my mouth. as soon as I ate it I thought: "What the Fuck did I do that for"? I've probably had 1 or 2 since the wedding and I decide to eat one now? being the paranoid freak I am I call the PET Center to make sure I didn't screw up.
Better safe then sorry. We get to the Center and they do the usual IV of radioactive glucose, set me up in a waiting area and hand me 2 quarts of the Barium crap. I ask her WTF do i need to drink that for? I've never had it for a PET. She tells me its SOP now for all PET Scans and that its not as nasty as the Barium for the CT Scan. Crap. more radioactive crap. And my CT scan was on the 23rd, 8 days ago. With all the lights off you can detect a light glow eminating from my body. I wait an hour they strap me in and thankfully, even though I had coffee in the morning I fall asleep. I was worried I would not be able to sleep. Thirty minutes with no movement allowed would drive me crazy.
Now we wait. The waiting part is the fun part. Dani will assume I have cancer and will need chemo/radiation this time around. I will assume I don't have Cancer and not think about it.
In the meantime, we will go on a little trip starting this upcoming Sunday Night. Avoiding Labor Day Traffic at all costs.
Wednesday, August 30, 2006
Dani & I Head out to the Farm to set up. Her family stays in town to do more of the tourist thang and buy earrings for Dani. This wedding was put together using no professionals what so ever. I need to give some major credit to everyone who helped us put this together:
Eric & Lori: Donated the Location; Country Pleasures Farms. A beautiful Orchard Farm on rolling hills near Frederick MD. They do have cows and chickens but primarily it's an Orchard, Organic. Eric was one of the first Certified Organic Farmers in Maryland and helped organize the Organic "movement" in Maryland.
Tony & Lori: Donated the Flowers and the decorations, and set up, floral and the dinning/party area. The Flowers were from their farm in LaPlata, MD. Lori was a co-worker of Dani until her just recent retirement and Dani's raises Bees with Lori on her farm.
Dani works for Eric & Lori on Sunday at the Dupont Farmers Market and for Tony & Lori on Saturday at the Old Town Alexandria Farmers Market.
Courtney: Friday's Party
Dani: The Menu.
Phil: Booze, of course :D
Many Friends: Set up
Out at the farm: We set up. Dani and I start in. I put the chairs in the truck but we need Eric to transport the chairs down to where the ceremony to take place. I mean, I could work his standard but the clutch may not survive. Dani comes down to help out, setting up chairs and all is ready for Saturday.
Back to the barn we go to finish setting up what we can. Lori & Tony will be by later to finish what we can't do. we need to head back to DC for the Party. Kind of a dinner rehearsal for family and close friends. For several reasons we decided not to have Bridesmaids/Groomsmen. The main reason was we had been through so much already, this day was gonna be the way we wanted it. Simple, elegant, and completely about us. Thank God our Family's aren't stereotypical and were really pleased with everything. Some might consider that "selfish". We do not prescribe to that theory. we did have de facto brides/grooms peeps. Well Dani had an entourage and I had my oldest friend, Andy, as my de facto Best man. And though I go many years without seeing him, when we do see each other it's like a day hasn't past since we last hung out.
A Comedy(?) of Errors
Back home, Dani went down to the B&B to gather the family. We would meet at the corner and then walk up to Courtneys for the Party which was gonna start at 7:30ish. At some point, I started drinking. Andy calls me to say he missed his turnoff on the Beltway. He was coming in from Fredonia. Instead of heading into DC he was headed through Northern Virginia. That wasn't good. I was gonna have to navigate him almost all the way there using an Atlas, over the phone. At some point My brother and his entouirage called me with some navigation questions.
BTW - I haven't seen most of my family for a long time, Late 90's. Supposedly all 3 of my Brothers were coming along with my Mom. Hence my nerves and my alcohol consumption. as my older Brother Jeff kept pointing out, all of us have not been in the same room, much less the same house, in a few decades.
the details are foggy but Dani is on her way to the Party. My Family is on there way to the Party. Dani thinks I'll be there before she. Meanwhile, I'm Navigating Andy through Northern Va. & DC. once I get off the phone with him I call Dani and catch her just before she gets to Courtney's. She's a "little" surprised I'm not there yet and doesn't want to go in without me. I apologize and explain the difficulties as I head out, just me and a full flask of Makers Mark. Courtney's is only a few blocks so Dani does not have to wait long.
I'm kind of a wreck walking up the stairs. I assume my family is gonna embarass the shit out of me and Dani has not met them yet. Oy Vey.We get in and there are a shit load of people there. i don't think I knew everyone. I'm confused, thinking it was gonna be a bit more intimate but very happy it's not. I can melt into the crowd and let Dani take the spotlight, reluctantly. I assume as the groom I should be confused, not sure of exactly what has and has not been planned.
And, as I need to remind most, my memory has yet to recover from my treatments. In fact, as I write this my memory gaps are very apparent and Dani has been filling in the gaps.
But the Party went well, The food and alcohol were excellent, and everyone got along surprisingly weel. My youngest brother (-2yrs) was unable to make it so we'll see him at the Wedding. Andy will be spending the night with us.
Dani's Mother, Sister, and two nieces arrive at National Airport from Missouri, around 10AM. The nieces are pilots, apparently
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
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.
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.
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.
Saturday, August 26, 2006
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.
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.
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.
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.
Wednesday, August 23, 2006
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.
Tuesday, July 11, 2006
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.
Wednesday, July 05, 2006
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
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!
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....
Wednesday, May 31, 2006
This includes multi-tasking, word retrieval, recogniton issues (especially with people), etc. Sometimes I have to pause while speaking due to articulation issues. Sometimes I just can't think of the right word. Sometimes it happens too often.
This "symptom/s" can apparently continue well after treatment has concluded........."Diaphragm! "(explain that later, word retrieval delay). I also seem to still have a problem with irrationality/emotion swings. I saw a reference that connected emotional/rational issues to chemobrain but can't remember if it's a symptom on itself or brought about by frustration due to cognitive difficulties.
And, unfortunately, I can get very frustrated.
The problem with all this is it was easy to recognize during treatment. Not so much now. I think it might be a combination of not expecting it and perhaps the symptoms are worse, an accumulation that I can't/didn't recognize? The symptoms, especially irrationality, have snuck up on me several times, even after I read about its existence. I need to keep diligent, watching for it. But is it harder for me to remember these things? Here's a nice circular argument I could have with myself, eh?
Did I ever tell the "Blanket Story" here? Short version: During chemo days, Dani wanted me to bring the blanket and once I did she didn't want it? I almost exploded but I was able to catch this completely irrational emotion. I went to the living room and actually had a debate/argument inside my head. one side saying I was justified in getting upset, the other side telling me what an irrational idiot I was. I started repeating to myself "It's the chemo". The right side one that night. Lately, it hasn't, though. For some reason I didn't think recovery would be so difficult. And maybe, once again, my outward appearance is playing a roll in that. That might amplify my frustration. It's a double edge sword, though. Not losing my head hair and not losing weight was most likely a tremendous help in my Morale and thus my success in beating Cancer. but it still sucks when I lose my battle with my irrational self.
And most unfortunately, Dani is usually around me when I lose my battles. Sometimes I think I don't deserve her. Of all the things she's had to put up with, an irrational Phil is not needed, to say the least. Sorry.
And sometimes my anger might be justified but I am not expressing it well, expressing anger at a perceived slight. i can only recall the basics but I was angry, and telling Dani why I was angry. She thought I was being irrational. I thought not so I went into detail. As I was explaining to Dani why I was angry the real source of the anger revealed itself. Then Dani understood why I was angry.
Does that make any frikken sense to anyone? Lets plod on...
ChemoBody: "Physiological dysfunction associated with chemotherapy. It is thought that chemotherapy may cause increase in injury, hematomas, and other problems that make it difficult for patients to recover physically. Also known as chemo-body, and chemotherapy-related physiological dysfunction."
OK. I made that definition up.
I kill me! But, actually, there seems to be something going on. And I don't think chemobrain is causing it.
1. As some of you may have heard me whine about before, I'm fat. I need to exercise. My sneakers were 3-4 years old and I was getting shinsplints just from walking in them. So I got new footwear, Trailrunners. Within a few days I had some blisters (typical), and a hematoma under my left big toe (atypical). The toe was sensitive to touch. I couldn't wear anything but sandals for a week. I don't recall injuring it. Dani said I stubbed it earlier. And I recalled that incident after she mentioned it but it didn't seem connected. That disconnect may be chemobrain or.....
2. We went to our friend Claytons Family Farm outside of DC for Memorial Day. Beautiful land. We had been playing all day (I'm like a Fresh Air Kid when i get out of the city) and I noticed my right ankle hurt. Then it swelled up considerably. I have no idea when I hurt it, no defining moment. It required ice and the next day the swelling was gone along with some pain. Still dificult to walk on.
I seem to injure easily and I don't know why. Maybe it's the lack of activity?
Diaphragm. Sometimes after i eat my Diaphragm area becomes "bloated" and feels very uncomfortable. I'm talking expanded to the max. Might be an issue with my digestive system still out of whack. Maybe an allergy?
Note - earlier today I was thinking of that symptom and couldn't remember the word "Diaphragm" until I was writing this entry. Word retrieval difficulty.
So, on some days, ie yesterday, I can be in total irrational mode with "chemobody" galor and I'm about as much fun to be around with as an angry badger. Add that it was 93* in DC with a Heat Index of 100* and I can become a rabid badger. And if you've never seen an angry badger then consider yourself lucky.
Most days, though, I feel really good and I don't expect chemobrain to last forever.
Oh. One other thing. My Left Nipple hurts when I press on it. No idea why. But on that bit of TMI I'll say goodbye. LOL!
Sunday, May 28, 2006
Post treatment visit with the Doc to get the "final word".
PFT test results: Lungs are fine. No damage. "Wow". I'm surprised.
PET Scan results:
1. No definite evidence for a FDG avid malignant tumor
2. Diffusely increased FDG uptake in the axial and appendicular skeleton consistent with bone marrow hyperplasia secondary to chemotherapy. While such intense activity limits evaluation of the skeleton, given this limitation, there are no discrete foci suspicious for osseous metastatases.
like that second "impression"? Bone marrow cells undergo intense growth after chemotherapy in younger patients (hyperplasia), therefore an area of my skeleton glows from the PET scan - a false positive. No discrete foci for osseous metastases means no skeleton tumors. Capice?
I'm negative for Cancer, dammit! HalleFuckingluiah!
I give my Doctor a heart attack when I tell her my hands and feet feel swollen. She drops to the ground and checks my feet. Swollen feet are a sign of heart condition, secondary to chemotherapy. she says they're fine. Must be the weight gain. :( Sucks but it beats death, no?
I'm cured! I don't believe in remission, that's for pessimists. My Dr., however, doesn't share my philosophy. There may be Lung/Heart issues, along with secondary Cancers. I will have a CT Scan/Onco visit every 3 months for a year. Then every 12 months for 6 years. then My Doctor will be convinced I'm free. I think She just has the Hots for me and can't let go.
But I'm officially free of Cancer. So why no Party? Dani and I are both react with a blasé attitude. In fact, we don't "react" at all. it sucks to lose someone you love to Cancer. Like any other loss, you mourn. Why aren't we reacting in the opposite way?
I think because it's been such a long struggle. One that was physically and emotionaly draining for both of us. It consumed our lives. Focused us on me kicking Cancers ass. then there was the second PET scan after 8 treatments. We both cried with joy after we heard the results. Then there was my last treatment on 4/28/06. We cried with joy then. Then my last PET scan on 5/4/06. I think we both assumed that if the scan showed Cancer we would have been called immediately for more treatments.
And once I started to feel "nothing" we both felt.................done. We were done with this. So when the Dr. confirmed I was Cancer free we were done and had been done for a while. No need to celebrate. No desire.
Dani described it as your last finals in college. you study for them for months, take them, finish them, and then say "Huh, what next?"
We are done.
It's been a long road, somewhat hellish road. But still filled with some amazing happy times, the best times of my life with many more to come for Dani and I.
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.
BTW - Older people don't need less sleep, they get less sleep because of aches, pains, etc., wake them up. Been there, briefly. If I haven't made it clear, it really sucked.
PET Scan to see if I'm Cancer Free. Of course the douchbag can't hit the first vein. My scan was delayed a little because the person before me moved his head during his scan. I don't understand that. I sleep through mine. Can't have anything but water for at least 6hrs before the scan. getting up and driving to the Hospital on an empty stomach and without any coffee takes all my energy. How could one be awake enough to "move" during the exam? especially since they strap you in pretty good?
Last blood draw. I guess they want to make sure my cell lines are recovering.
Pulmonary Function Test. I'm a little worried about my Lung capacity. It seems different and can be easily affected by Chemo. So my Dr. orders a PFT. This one takes about 10 minutes. My first one took 30-40 minutes. Dani thinks something must be wrong. I think my Lungs must rock...................mostly.
My next Oncology appointment isn't until 5/26/06. We both decide, to ourselves, that we aren't gonna worry about the test results. Not gonna bug them about it. time to get on with our lives, no?
Saturday, May 06, 2006
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.
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!
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 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.
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.
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.
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?