Wednesday, August 30, 2006

Wedding T-1 Day. [L]

Friday, 7/7/06
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.

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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.

The Party
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.

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.