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

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

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

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

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

Am I babbeling?

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

Oh well.

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

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

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

;)

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

FELIZ SEIS DE MAYO!


Peace

My Body Pathetic - Post Treatment Week 1 [C]

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

Where was I?

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

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

I want a Camel Light.

I Feel Like Ass/Steroid Effects

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

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

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

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

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

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

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

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

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

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

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

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

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


Peace

4:18PM, 4/28/06

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

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

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

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

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

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

"I'm done."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Anyway....

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

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

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

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

Fuck Cancer!!!!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Landlord/Tenent Battle

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

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

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

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

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

Some Lawyers actually have Souls. ;)

The trouble with Dani's apartment began in August.

More Chemo -> More Side Effects -> More Drugs

The drugs I needed today to counter chemo:


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

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

my drug intake has increased gradually after each chemo.

Until then, peace.

No Chance For 100% recovery? Chemo Side Effects

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

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

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

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

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

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

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

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

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

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

Adriamycin "Can sometimes cause heart damage"

Fuck.

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

God I love her.

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

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

:x

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

Short term Effects:

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

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

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

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

Long Term Effects:

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

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

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

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

Taste Buds, Hair, My Poor Laugh.

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

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

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

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

Peace.

Food Purgatory

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

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

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

:D

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

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

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

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

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

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

FUCKING HATE IT WITH A PASSION!

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

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

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

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

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

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

On that note:

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


Peace and I love you all.

Food Hell III

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

Food Hell Part II

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

Chemo Causes Cancer

I'm on a roll today, eh?

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

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

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

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

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

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

Myeloid cells are precursor red blood cells.

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

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

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

TTFN!

Phil!

Food Hell. Part I

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

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

TTFN!

:D

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

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

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

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

Douche bag does not stop in a timely manner.

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

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

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

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

:p


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

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

The PET Scan was Negative. No Malignent Growth Detected.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

They did not stop in a timely manner.

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

She did not stop in a timely manner.

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

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

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

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

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

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

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

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

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

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

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

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

;)

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

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

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

I'm at a loss for words.

Dr. Death/Cancer Benefit/Nodular Sclerosis

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

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

It's killing me. LMFAO!

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

Update time:

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

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

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

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

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

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

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

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

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

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

:D

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

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

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

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

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

They played an amazing rendition of a pixies song also!

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

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

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

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

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

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

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

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

Fucking Cancer Sucks

Don't F* With Me!

Especially on Chemo Day!!!!!!!!!

Thursday, 2/2/06

Finished my 3rd cycle (6th treatment) Yesterday. My CT Scan showed "remarkable reduction" in Tumor masses. I have a CT/PET Scan after my 4th cycle and may be done after 6 cycles, not 8. So "ill be done any where between April 27th & June 22nd.

On another note - why are Cancer patients such Fuckheads? A Bitch tried to change the order in which bloods were taken. She signed in 4th and tried to get in first, shuffeling the forms filled out by the patients. What The Fuck is up with that? Dani and I debated the Bitcheses problem loud enough for her to here while I "corrected the order".

Then we had to go to the Infusion unit instead of The Bone Marrow Transplant (BMTx) Floor.We went to the Infusion waiting room and as we were ready to sit down in this tiny cramped room I hear: "That seat is for my Mother" from behind. The tone was so unpleasant. I turn around to see the living dead staring at me. I just grab my stuff and head out into the hallway and sulk. She comes out to say there are other seats but I'll have none of it. I don't want to sit in a tiny waiting room with a bunch of cranky sick people! It's claustrophobic!

I'm in rare form

All this comes after the 3 mile drive to the hospital took 50 minutes cause of traffic.

In BMTx you're immediately put in a private room with cable. In Infusion your crammed into tiny sections of a big room with curtains to separate out all the people who are in way worse shape then me. Its about a 7'x7' "room" and no cable!!!!! For 4.5hrs!I don't want to see other people. They aren't in a good mood and/or they like to discuss their condition with you. No frikken Thanks!Spoiled by BMTx and in rare form.Honestly, it was rough. Dani got upset a couple of times because of some patients and their condition. It was heart breaking. I blocked out everyone else.

We went to Whole Foods afterwards. it's a tradition and I try to blow off steam. Unfortunately, it was not to be. No one got near us. Wonder if they could sense it this time?

So here I sit. My irritation level higher than ever. Sensitive like never before.the hair I loss on my legs is trying to grow back? WTF? My head hair is thinning still but no gaps. My thick luxurious locks are putting up quite the battle but half of my eyebrows are gone. LMFAO!

I'm exhausted after chemo but can't sleep. been up since 6AM, 6hrs sleep. Grrrrrrrrrrrrrrrr!On another note - I had 2 cavaties filled last Tuesday. The dentist couldn't numb a particular nerve. She gave me all the Novocaine she could and the work wasn't anywhere near a nerve. But I could still feel it.Increased sensitivity all around? I have to brush 3x/day and use fluroide mouth wash after each brushing b/c chemo does a number on teeth and has probably already done a number on mine.

My irritation level is high but I've kept it in check. I still run through the full range of emotions but also keep 'em in check. My nausea has increased making eating somewhat more uncomfortable and way less desirable. I still eat. Hopefully these will fade in a few days. Hopefully I can drink soon.

In the meantime, our building was sold in foreclosure. This will make life even more "interesting". And in fact already has. I'll save that for another day.

Done Whinning so I'll end with a smiley thought.........No more chemo before the benee bash & I may be half way done!!!!!!!!!!!!!!! Have a drink for me! I'll be drinking in a week or so!

Barium Up The Bum & Relax That Tongue!

Ahhh yes. is there anything more pleasurable than Barium?

I Arrived at 0730 today. At 0800 I got to drink Barium Blueberry milk....ish thang till I though I was gonna puke. At 0830 I got nekkid, except for the gown, and on the table. After two sticks (I take it for granted they will miss at least once now) I had an IV ready to deliver a nice radioactive warm glow throughout my system. Then I rolled over and............................Uhh! Barium Enema Heaven! Hold those cheeks!

Full Body CT scan, Neck to Pelvis.

After that, it was back to the Cancer Center to have my blood drawn. Only one stick for that.

To make the trip more interesting I decided to wait until I got home before I would release any of that glowing warmth. Hospital bathrooms make me nervous.

On a side note, my arms aren'tooking so healthy. Dani asked a brilliant question: "Can they not use the legs"? I honestly don't know the answer to that.

Yesterday was another visit to the Dentist. We went for four cavities since they all "seemed" small. I couldn't feel half my face for all the Novocaine she gave me. The last cavity was not so small. It was in my wisdom tooth. I have 3 of those, one was lost to a cavity looooong ago. She's tells me it might have gone all the way to the nerve. That's a nice thing to tell a patient as you drill closer to the nerve. I thought my grip was going to break the armrest as she worked that tooth. Luckily, no pain. Except when the "Vibro-tool" would occassionaly bounc off the wisdom tooth and hit my upper tooth that just had the root canal. I signaled this problem and She asked if I wanted the upper teeth numbed. No thanks I signaled (I just wanted this done). And as they worked I kept doing that gag-like reflex because of the water build up in the back of my mouth. You knoew how uncomfortable that can be yes?

well, they had to keep repeating: "Relax your tongue". I have a work zone going on in my mouth and half my face is numb. And they want me to "relax my tongue"?

Relax My Tongue? My tongue was Fucking numb! I didn't know where it was! LMFAO!

My Dentist is lucky she's cute. :D

Then I got an itch. this was when I was home. I had an itch. An itch on my chin. I itched it but it was numb. I could not feel me scratching it but I could feel the itch. I went to the bathroom mirror and visually located the itch region. I scratched. Nothing. I scratched harder, at least I perceived it as harder. Nothing. Talk about freaken Hell! How can you have an itch if you're completely numb? What kind of twisted biological network is this???? LOL! It's funny now but I thought I might go crazy over that itch.

;)


Peace.

I'm Growing a Mullet!!!!!!

My hair is thining everywhere.....................except the back. I can pull it out with ease everywhere.................except the back. It stopped growing everywhere a while ago......................except the back. I'm not sure what to do, have Dani cut it or let it go? I mean, I think we're gonna shave me bald when my hair starts to fall out in clumps but what now?

Maybe I could get a cowboy hat to go with my Mullet?????

:D

Satan Incarnate

That's me after chemo now. Usually a trip to Whole Foods is all I need. I vent on all the suburbanites and my irritation goes down. Didn't work this time and the worst of it hit Friday night. I took out my anger on my new cell phone that I couldn't figure out, on the mouse to our PC b/c I was having trouble navigating a web site, and the remote control of the TV. Then I took it out, verbally of course, on the person least deserving of my anger: Dani.

God I felt like the biggest piece of shit. Sorry Dani. I love you more than anything.

I couldn't control it. I was angry/frustrated and it was completely irrational. I was sooooooooo irritated. I tried to hide in the bedroom and mope. It didn't work. We discussed it later. It was like PMS. Like i had PMS and a horrible case of sunburn! Like my Hormones were raging but I have no experience with it. I suggested the next time this happens that I leave the apt. Dani thinks I might get into trouble with people on the streets if I leave like that. She would rather leave but I'm not comfortable with that. Why should she leave?

Maybe the next time I go off the deep end Dani could just bring all this up? Maybe that and a slap in the face will bring out the rationale me? Is that foolish/wishful thinking?

Chemo can so suck.

Mark Your Calendar!
This Sunday we went to her friends organic Farm in Maryland and stayed the night. They have a beautiful house and a new barn they should have completed in a few days. We are planning on having our Wedding there so save the Date: 7/1/06, K?

Monday, 1/23/06
Still irritable. Grumpy, not satan like. I'm wondering if it's my "low on the radar" symptoms? I might be getting tired of my leg bones aching, stomach bloat, backaches, nausea, my complete lack of appetite, fatigue, burping, acid indigestion.........whine whine whine. I am mostly upbeat but maybe I'm just getting tired of it all.

Eating with no appetite, and slightly nauseas sucks so much. I really don't remember the last time I ate because I was hungry, or because I would enjoy the food. it's like Oxygen, you don't notice how nice breathing is until you can't. I really miss eating from desire. eating instead b/c I have to. Trying to determine what i might like before each meal can be a trial in patience. If Dani wasn't with me I might easily stop eating.

On a side note - wondering if the burbing/acid indigestion is from my stomach flora being out of whack from the chemo? Gonna try........................for the 2nd time in my life............................Yogurt!

LMAO! I'm gassy, bloated, and have acid indigestion. Who's gonna say I DON'T have PMS? Or maybe I'm pregnant???????????????

:D


Peace.

Do you Sudoku????

This crap came from nowhere and was all of a sudden everywhere. Giant displays in all the bookstores, in the Post, etc.I have too much time on my hands. I grabbed a beginners book. Now I'm somewhat hooked.

For those that don't know - It's a simple(?) logic number game. Only(!) using numbers 1-9. I don't know why its so addictive. Except maybe the fact that you can always finish a game as long as you think. Plus, IMHO, there is Absolutely zero reason to cheat.

Check it out if you dare

Trip Report: Chemo#5 & Photos

I'm a little out of it. So 'Scuse.............whatever. It's 11PM, Thursday night.

Wednesday 1/18/06

3:30 PM - The Drinking Starts. Shots-o-Makers Mark (MM)
4:10 PM - Arrive at Dani's Book Release Party, full flask of Makers in Hand
4:10-8:00 PM - Drink some more. Party seems to be full of Networking Org Interns. I spend half of my time in dani's office playing on the computer and Drinking MM & Coke. I'm really stressed about my CT/PET scan. Plus, I f I get chemo I won't be feeling up to drink for a while. So might as well have on last Pahrtay, no?
8:30PM-1:30AM - We get home, Eat, drink, be stressed. Dani doesn't get to sleep until much later.

Thursday 1/19/06
7:30/8ish AM - Oy Vey. Wake after much prodding from Dani. Bless her heart., drink coffee, eat, be miserable and stressed
9:30 AM - Arrive at Hospital.
9:45 AM - Give blood for counts & infection check
10:00 AM - See Doc. Doc approves full force Chemo, SOSO. Schedule CT Scan for next week and will "save" PET approval for after chemo #8. my Doc is leaving G'town for Florida next month. I lose him and his caseworker Nurse. :( I'm not happy about continuing my chemo without an "update" scan. I probably don't need as much as they're giving me. better to continue treatment then to allow the Cancer a chance, no? That's what Dani & I decided and probably my Docs thinking. I just hope the excessive chemo doesn't give me Cancer! LMAO!
10:30 AM - Arrive at BMTx floor. Love this Wing! But no cable in my room, dammit! I also just wish someone could hit my humungous veins! :( The Nurse today described it as they're huge, but they seem to shrink away as soon as I stick you. I call that some smart veins! LMAO! Or maybe they get cold after getting stuck? Everyone knows about shrinkage, yes? LMFAO! I kill me! She stick's my right arm 3 times with no luck. Hits my left wrist on the first time. Doesn't feel great but I just want my drugs.
1:30 PM - 3:15 PM - Get my drugs we're out of there! - Tired, loopy, cranky, short of breath.

Time to go to Whole Foods in our neighborhood and give attitude to all the suburbanites/wannabes. :D

I have new chemo photo's on my webshot page. ;)

Peace.

Life Sometimes Sucks

Or at the least is very stressful. Let me start out and say Medicaid saved my ass. medicaid, unfortunately, is a bureacracy. A big one.

Stress Point 1: I've had 4 chemo treatments or 2 cycles of chemo. Each treatment is 2 weeks apart. I need a CT/PET scan before I can continue with chemo. This is standard. They need to know how the Cancer has responded and adjust the chemo accordingly. My next treatment is scheduled for this coming Thursday, 1/19/06. TWO days from now. I've been waiting almost 2 weeks for Medicaid to "approve" my CT/PET Scan. This scan would cost @$7,000 out of pocket. Yes, we were quoted that price. So, lets breakdown the "logic":

No scan -> no treatment.
No treatment -> Cancer gets worse.
Cancer gets worse -> Treatment takes longer/patient at greater risk.
Costs increase for insurance

One of the most important items during chemo is to GET THE CHEMO ON TIME. It's vital, it's crucial, it could even be critical This is causing Dani and I a bit of stress. If I get approved tomorrow I don't even know if I could get an appointment in time.

I don't think about it. Dani does.

We also pretty much maxed credit cards and depleted savings on getting tests and what not for me before I started chemo and before I was approved for Medicaid.

Stress Point 2: The House we live in is going up for foreclosure next week. Dani has a lawyer. DC has the strongest tenent rights in the Nation (Berkley is a strong 2nd. ;) ). We've been kind of Landlordless since September as the lawyers of several parties fought. Dani has been putting her rent in an escrow account since then. Unfortunately, foreclosure sale leaves us with limited options. Someone can "buy" this place for $52,000 cash and give us 3 months to vacate. Dani loses the option for first right of refusal with a foreclosure. She's hoping a couple of friends might be interested in the property so we can stay. It is in the middle of the hottest gentrifying area of DC but the Market is starting to crash. The Condo bubble just burst. Anyway, having to move while I am unemployed/disabled is stressful. I'm a liability and could never sign a lease. God I hate the thought of that.

Stress Point 3: Why is disability so shameful? It will take 3 months for Social Security to approve/disapprove my application. I won't apply for food stamps. Pride is stopping me. Dani doesn't want me to either. Such a stigma behind Food Stamps. This Country can sometimes really suck.

Stress Point 4: My teeth. We need to fix my teeth. Cancer/chemo really plays havoc on teeth and tooth decay. I had 2 root Canals just completed. Today I had two cavities filled. I have 8 minor cavities left and one cracked filling that needs to be replaced. Sounds like a lot but I've had no cavities filled since the 1980's, 1 root canal in early 2000. Anyway, I need those all done and my root canal teeth capped. 200-275 for each filling and I believe it's at least $1000 for a crown/cap. It was already a couple grand for the root canals, I think.

We are stressed.

Positive Time!!!!!!

The benefit for me looks like it's gonna be awesome! I think 150-200 people will be there. The bar is letting us do it on a Saturday for no cost. We have at least One band donating their time. I believe the leukemia/lymphoma society will be there. And the Service Employee International Union (SEIU) Americans for Health Care will be there. I would like to plug them here. from their website:

"Americans for Health Care - a project of SEIU, the largest union of health care workers in the country - is uniting working families, small business owners, seniors, health care workers, community leaders, and policy makers to fight for affordable, quality health care that we can all count on. In states across the country, we are building broad-based coalitions of individuals and organizations in order to push for health care policies which ensure:

Quality, affordable health care for all, without gaps in coverage or access;

Care that is cost efficient and medically effective;

A core package of health insurance benefits with choices comparable in quantity and scope to those available to federal employees; and

Financing that is fair and includes employers, individuals, and the federal, state and local governments."


45,000,000 - The number of uninsured in America in 2003.
8.5 million - The number of children in America who have no health care.
1 minute - The amount of time it takes for nearly 3 people lose their health insurance in the U.S.(Source: U.S. Census Bureau)

http://www.americansforhealthcare.org/index.cfm

Hope to see you all at the Party! ;)

I can't wait to look back at these times with dani and laugh. Life is worthless without a few struggles, no?

Peace.

Can I whine some more?

First: can anyone see my picture? I see a "red x"

Second: can anyone see my Favorite Book? I see nothing but the title is: "How to Annoy Me: look for common "favorites" as a way to gauge a potential friend".

WTF??????????

Can I whine some more? Thanks.

My nausea started to wane as of Monday Morning. It was nice to wake up and not feel ill. I wish I would feel hungry. I felt ill after eating but it decreased as the day went on and is mostly gone as of today, Tuesday.

My knees hurt. The bones of my knees ache. My nerves in my legs still extend from my body and somewhat from my arms. What the Hell does that mean? It means you might be able to touch my arms but you should really avoid my legs.

I had what felt like an asthma attack last night. Came from nowhere. All of a sudden I was struggling, moderately, to get Oxygen. WTF?????? After a while I popped a Benadryl and it went away.

I'm always tired. I can start shaking from coffee consumption and still be sleepy. WTF?

I feel a little nauseas.

I walked 20minutes, on the way to Dani's work, and stopped into CVS. I was short of breath and tired. I squatted for batteries. I purposely rose very slowly and got a major head rush. WTF?

My side hurt a little. Maybe my kidneys. WTF?

Sometimes, while doing nothing more than playing on the computer, my chest hurts and I'm short of breath. WTF?

I am waiting to get "approved" for another CT/PET Scan. Can't go ahead with more chemo until they take dirty pictures of my innards. Medicaid saved me. medicaid stresses us out. WTF?

Digital Camera batteries are $14!!!!!! WTF?

Don't tell Dani any of this. She worries about me too much as it is. Actually, she knows most of it. She doesn't miss a slight change in my breathing pattern. I wish she would stop worrying so much about me. I'll be done with this crap in no time. Way before our wedding.

Peace.

Post-Publishing Edit: My memory is going to Shit! I've forgotten a friend was pregnant and I've forgotten about calls from friends. i might have forgotten other things but I can't remember. LMFAO!!!!!!!!!!Friends: Please keep in mind my condition affects my memory.

Thank you.

Backpacking the 'Dacks!!!!!!!!!!!!!!!!!

In my dreams!!!!

Speaking of which, I seem to be having some nasty dreams before I completely fall asleep. Must be part of the insomnia thing.

Wait, this is a bp post, dammit!

Who knows when I'll be able to get back out but I need to plan. i've been looking at my Adirondack (dack) topo's. My goal is for my first post-cancer trip to be in the dacks. It's where I started, it's kind of like "homebase". I have no idea when this trip will be but I need to think about it.

I'm thinking I want to go into The Northern Region. It's relatively flat with tons of Lakes & Loons. A campfire on a lake with Loons singing. That is the quintessential backpacking experience, IMO.

I'm thinking I want to do the Northern Terminus of The Northville-Placid Trail. Then, I could explore some of the Western High Peaks of the dacks if I felt up to it.

I'm thinking I want to do the Cranberry Lake Region of the dacks. There are some really nice loops in there.

I'm also thinking I want to do Nova Scotia. No idea why but it's there so I ordered info.

I'm also thinking about gear. I need nothing for 3 season camping. If I purchased some winter pants then I could bp anytime. Anytime below Alpine/3 ft-o-snow in a night camping. My tent is not rated for extreme winter conditions. Actually, my tent isn't really rated for winter, kind of. It's a 3 Season, 4 Season "convertible". I think that means if it rips apart in a snowstorm the Manufacturer isn't responsible. It's a damn sturdy tent, though. The Sierra Design Orion AST, 2 person.

Dani needs some gear. Boots and a pack. Maybe some rain gear. I window shop online for her. I despise shopping unless it's for backpacking..........Gregory, Kelty, Vasque..........Drooooooooooooooooooooooooooool.............

I really need to get out.

:D

Chemo/Nausea/Epiphany

Thursday, 1/5/05

I get to G'town Cancer Center at 9:30 for my blood draw. I sit in the chair and present my left arm with what I thought was a caveat: "the last draw bruised the vein at my elbow, please don't use that one." Apparently, that was an invitation to the Vampire*, not a warning. As soon as he stabbed me I said "WTF?" He seemed oblivious to my concern. I wondered at the point if they just use veins until they collapse? Plus, what could I do at that point? he had stabbed me already and there seems to be only 3 Vampires. Do I complain and perhaps enrage the bloodsuckers and his siblings? I think not. Complain and all of a sudden they can't seem to hit my veins the first try.

*They seem to be Phlebotomists. From working in Hospitals, I've always known Phlebotomists as "Vampires". They may do more than draw blood but I've never seen it.

Trial 2 - Dani & I get a room and wait for my Oncologist. My vitals are taken and my weight is at a whopping 168!!!!! Remember, I weighed 145 coming out of the hospital in November. I have very little appetite but I eat. Dani makes sure I eat. I try my hardest to eat. However, for some reason I'm concerned that I'm getting "fat".

Oh no, I'm getting "fat". Forget cancer, I might be getting "fat". WTF is up with that? Hair loss and fat. That's what I need to be concerned about right now. ;) So be it. I hope I can get fat while fighting Cancer. I'll be a Fat Bald Phil. But I'll be a thriving fat bald Phil, Dammit!

Up to the BMTx floor and our favorite Nurse, Maggie. Nicest Nurse in the World. And like I said before, they love us. Love our attitude. Of course, I'm not in such dire straits. Can't imagine how depressing their job can be. Maggie is concerned. She remembers missing my vein last time and doesn't want to do it again. Maggie and her Nurse friend, Sabrina, are the "experts" at sticking outpatients. They help out on both Infusion & BMTx floors.

I tell Maggie not to worry and stick me anyway. I tell her to go for the vein she missed last time, it's one of my best. She misses. Chemo veins need to be nice, strong, and straight. I have plenty of them but they seem to "roll" a lot. This makes it difficult for the big Infusion Needles. I tell her to try again but She doesn't want to "hurt" me. I laugh and tell her needle sticks don't really hurt anymore but She doesn't budge. She goes and gets Sabrina from the Infusion Floor. Sabrina is checking out the veins on top of my arms in the wrist region. She's studying them like a Golfer studying the Green before a Putt. I've never had a wrist stick and it makes me uneasy. She says they're great places to stick, easy with less pain, and I might want to consider shaving my arms for future sticks. I remind her that I might not have arm hair much longer and I want to see how it falls out.

She sticks me. She pulls back blood. She flushes. She's causing more pain then I've ever felt. WTF has become my favorite saying this day. So I say; "WTF?". I flex my fingers slowly and cause myself more pain. Again, I say: "WTF??? This hurts more than anything I've had." It's like she stabbed a nerve. She withdraws the stick.

So now I have two very apologetic, stick expert/Nurses by my side. Quite amusing, I thought. Again, They're probably lucky they're apologetic, young, cute Nurses. ;)

Maggie decides they should "Tag Team" Me. :O I'll write about that Episode in Penthouse!!!!!!

LMAO!!!!!!!! Yes, I love amusing myself.

Anyway, Maggie is eyeing my upper left arm. About 2-3cm North of my Elbow. The veins are humongous up there. She sticks me and I spurt blood everywhere. They cap the Geyser and now I get to wait. Dani, meantime, decides to call Social Security. We got a message on Wednesday that they were missing some forms from me for my disability claim. My Case Worker wants me to "pop by". I'm a little busy so Dani calls. She's on automated hold for a few minutes before she is cut off. Dani plays this game for the better part of an hour or so. Apparently, DC SS workers don't like using their phones. Meantime, I sleep. I've become quite adept at falling asleep....................sort of. I mean, I can fall asleep in weird places.........weird for me.

God, I feel ill right now. It's 7:43PM EST. Sunday.....btw.

Drugs come, drugs go in my arm, we go home. 4PM. My vein/arm did not hurt for a change. They pump a huge volume in and the drugs are not nice so it usually hurts. The size of the vein must have helped. I was going to take pictures but my batteries died. Next time, K? :)

Post-Chemo Fun
I "need" Neupogen. My Neutrophil count is 2700/micolitre. Well above the 1000 minimum threshold but my Doc is being cautious. I just hope his caution won't rupture my Spleen. I "debated" this with him but I wasn't really expecting any other outcome. Besides, I hope to become really good at injecting myself so I can put it on my resume.

Extendo-Nerves: My nerves are on edge after Therapy. I'm not talking in an emotional sense. I'm talking raw, physical nerves extending from my body and they are not happy. I can feel them mostly in my arms, sometimes in my legs. Someone explained it to Dani like a really bad sunburn. Never had one but my nerves are raw. Not always, but sometimes. More so as treatment continues. Dani went for a Play bite on my thigh once and I swung before she made contact. Swung in a defensive mode, not play mode. It hurt before she touched me. It hurt even though it was never going to hurt. I ended up hitting her a little too hard. Didn't mean to. And there was no damage. it was just a little harder than I would have swung if I was "normal". Pure instant defense. Caught off guard even though there was nothing to guard against. Makes sense to me but I'm not sure about anyone else. Anyway, I'm on edge so of course we go to Whole Foods! :) We usually put Iggy Pop in the car stereo for chemo day and "Mule Skinner" is our favorite, we blast it several times. Perfect for the trip to the Market and my mood. I'm a complete bastard to anyone who gets in our way or almost in our way. Most shoppers there are rude, snobby, make-too-much-money types so I really enjoy our going there after chemo. I mean, I really enjoy it. you should join us someday for it.

Friday, 1/6/05
Off to Social Security office. It's afternoon. I don't feel well. My nausea has been increasing with each treatment. We assume SS will be swamped and are hoping we can just speak to the Man who called us. We are assuming this is not the way SS works, being govt., so we have a Plan B. Sure enough security tells us we will have to take a number because my Caseworker isn't expecting us. I ask how he could possibly expect us when no one answers the phone? She just smiles and gives more of her speech and we walk away. The room is full. No Problem.

Plan B: Dani goes over and intercepts the Security guard.

Dani: Excuse me. I'm sorry to bother you but my fiance just had chemotherapy yesterday and there's a good chance he might vomit shortly.

We meet with my Caseworker within minutes and I sign my name to three forms. They are all being very nice and apologetic and soon we are out the door.

Nausea: What is up with the nausea? It's new, within the last two treatments. It's not intense. I wake up feeling queasy. I feel queasy after eating. I feel queasy often now. I have no real appetite but that's no big deal. I get indegestion and hiccups like never before. I also feel bloated. That is, if a Man is allowed to feel bloated. I burp a lot to ease my stomach. And sometimes I just burp a lot. Dani suggests the bloating is from the corticosteroid. Why didn't I think of that? My brain is a big fuzzy cloud sometimes. I've taken a Prochlorperazine & Zofran every day since my last chemo. I also pop 6-12 Tums a day. They aren't doing much to help. WTF?????????????????

The Zofran saved me after my first treatment. It's kind of troubling that it's not helping now. Both of us are puzzled. is not nausea????? Might I need to try some alternative nausea treatments if I can't fix this? Might need to get out the brownie recipe if things get worse.

:D

I tire so easily now and don't need to walk in order to experience shortness of breath. My communication skills, verbal, suck ass. Goes with the fuzzy cloud, perhaps. Home stretch..............................

Epiphany, Sunday 1/8/05
Dani & I are invited to her friends, Krissi & Reese, for the Fifth Annual Epiphany Brunch. It involves friends, food and bread with a buried coin in it. For a deeper explanation google Orthodox Greek and Epiphany maybe. Honestly, it's a really neat kind of Spritual event that I can't possibly explain and do justice to. Anyway, Dani was served the slice with the coin. They're great people and we wanted to stay longer but my nausea level was rising. I'm thinking I most likely won't puke but God Forbid I do and I'm not home. I mean, I think sooner or later I will vomit but I'm not sure what i will feel like before it happens. I want to be home the first time it happens. I'm hoping I can predict it. Hoping. I hope that makes sense. Sort of. It's the best I can do.

We leave. we need to donate the coin, preferably to a church. We decide it will be the first church we come across after getting out of Metro. On 16th St. We cross our first Church, a Catholic Church. Seems very appropriate.

We donate the coin and a wad of money from our pockets. We headed home feeling quite well.

Drug Inventory/Schedule

Thursday, 1/5/05

Friday, 12:25AM - exhausted from the chemo but unable to sleep. My 4th treatment, 2nd cycle complete. Next week I need a CT/PET scan to see what's up before I can continue on with chemo. But first, I need to do a drug inventory for my own personal log. More reference, I guess. The scripts & Over The Counters (OTC) are numerous. Before Cancer I might pop a Tylenol or Motrin in a given year.

A. Every Thursday - 2 vials of blood taken (for blood counts):
1. CBC with Auto diff, reflex manual diff
2. Complete Metabolic Panel

B. Every 2nd Thursday - Doctor Appt.
1. Vitals recorded (BP, Heart Rate, Temp, Weight)
2. Visit Doctor, discuss symptoms, treatment.

C. Every 2nd Thursday - Chemo (as long as I "pass A&B)
1. Infusion or BMTx Floor (so far I'm 3/4 BMTx)
2. I hand them my records and they call the Pharmacy. No drugs are made until I personaly report to the Floor
3. I wait 3 frikken hours for drugs. Thank God they have cable.
4. They stick me with a big ass infusion needle - 20-22g. All Drugs will go through this point.
5. Gimee my drugs, dammit!

D. Chemo Drugs
1. Zofran: Given first as an IV by infusion pump to prevent chemo induced nausea
2. Dexamethasone: Corticosteroid given with Zofran (mix) to prevent nausea

3. Vinblastine: first Chemo drug. Given as slow bolos (slow manual injection), in @10min.
4. Adriamycin: Second Chemo Drug. Slow Bolos over about 10 minutes. (Red stuff and makes your urine orange-red immediately :) )
5. Bleomycin: Third Chemo Drug. Given by Infusion pump over 15 minutes.
6. Dacarbazine: 4th Chemo Drug. Given by Infusion pump over 1 hour.

That's a lot-o-nasty chemicals pumped in. I might add up the volume next time. My vein can start to get irritated by the time the final drug starts pumping. Especially if they use a small vein.

My day at the Hospital, From A-D, is about 6-7hrs.

D. Prescriptions - Scheduled
1. Trimeth/Sulfameth: Trimethoprin & Sulfamethoxazole;2 Antibiotics in one Pill. Prophylactic Treatment: Taken every Monday, Wednesday, & Friday. Started before chemo and will continue indefinitly. Must avoid long term exposure to Sun or Artificial Sunlight. :(
2. Neupogen: recombinant Granulocyte Colony Stimulating Factor (rG-CSF). Self-administered Subcutaneous Injection of .5ml Saturday-Wednesday after Treatment. Taken to produce neutrophils wiped out by chemo.

E. Prescriptions - As Needed
3. Zofran: Anti-nausea pill. Taken only once so far.
4. Promethazine: Anti-nausea suppository. Taken only once, used so I could take Zofran.
5. Prochlorperazine: Anti-nausea pill. Taken every once in a while. So far, 1 does the trick.
6. Tylenol 3: Used for Post-Surgical pain ("Lymphectomy"). Also used after Root Canal.
7. Vicodine: Used after 2nd Root Canal.

I've listed Tylenol 3 & Vicodin b/c I have a feeling I might be able to use them for chemo pain in the future. With the Docs permission, of course. Otherwise, Maybe I can sell them?

I'm keeeeeeeeeeeeeeeeeeeding! :D

F. Over the Counter - "prescribed" by Nurse for chemo related symptoms (As Needed)
1. Tylenol Extra strength: Prescribed early on to combat dailey fevers
2. Benadryl: For itching and Insomnia
3. Tylenol PM: For Insomnia
4. Sominex: Wanted something Stronger for Insomnia
5. Advil: Muscle pain, daytime
6. Aleve: Muscle Pain, for overnight relief
7. Tums: Acid Indigestion
8. Pepcid AC: Acid Indigestion

OK. That looks like a shitload of drugs. But I barely touch any of the "As Needed" drugs........so far. The OTC's were also prescribed at different times, as symptoms arose. It must be noted that I have to clear any OTC with the Oncologist. I'm gonna pop a Sominex now, However. It's 1:36AM and I need to get up early. I always have trouble sleeping the 1st few days after chemo. And I can't drink alcohol for days after chemo. :(

I'll discuss the fun I had with the actual chemo another day.

Peace.

Still Shocking. Why?

I should be ready for this. I thought I was. It was mentioned to me before I even started treatment. I've seen it coming for a couple of weeks. My facial hair grows so slow. What I grow in about a week isn't as full as my old 5 O'clock shadow. I have bald spots on my cheeks. My hair on my head stopped growing a while ago, also. And I noticed it's a bit thinner. Dani noticed a bald spot on top of my head. The hair on my arms and legs is thinning. I've even been running my hands through my hair, frequently, to see what would happen.

It's been coming and I've known about it. What's the big deal?

Today, in the shower, I noticed a little extra hair between my fingers. I pulled on my hair softly, gently, and some came out. I did this a couple of times. I just checked my eyebrows - AOK. :D I gotta stop. I'm not pulling clumps out........yet.

Why does it bother me so?

My favorite Artist is Dali. My favorite Dali is "The Metamorphis of Narcissus". I own a copy.

I could not prepare myself for this.

I feel great right now. If you visited me in person, right now, you would have no idea I have Cancer. I didn't know I had Cancer for 6-9 Months. I won't be able to "hide" it much longer. I hate that. I hate the looks that might generate. Think about the last time you saw someone that was bald from chemo.

Anyone gives me a look of pity and I might smack 'em.

I'm sick, not terminal.

Fuck Cancer. It doesn't stand a chance against me.

DO YOU KNOW WHO I AM? I'M RICK JAAAAAAMES, BEEOTCH!

:D

PEACE

NYE PAHRTAY

Wow. Just recovered. OK, not really. Dani was feeling like we shouldn't go to a party b/c I may not be 100% in regards to my immune system. I kind of agreed so we stayed home. Started drinking about 4PM. I haven't been really drunk since October. Mostly because I can't drink. I can't for @3 days after chemo and then it seems like my body really doesn't want a lot of alcohol any other day. NYE would be different for some reason.

Dani started with cheap Champagne. I started with Frangelico in my coffee. No, it was a gift from one of Dani's friend. We gnoshed the entire day. Then we both started in on the cheap Champagne. Mixing it with cranberry, Grand Marnier (GM) and Cranberry. I think we even tried Ginger Ale. I don't like cheap Champagne and the mixers didn't help. Not sure if I like good Champagne but we would find out later.

I seem to be a liquor snob.

I switched to Makers Mark on the rocks while Dani plowed on with the Champagne. Meanwhile, we gnoshed. Dani made an incredible spread of appetizers, cold and hot.

The cheap stuff was gone way before midnight and we only had one bottle of good stuff. We have a crap load of wine but Dani didn't want to mix Wine with Champagne. She's had bad experiences mixing Wine with most everything.

Dani doesn't really care for whiskey but she'll do shots of it if needed. It was still early. First, a shot of GM. Then on to the Makers Mark shots.

Meanwhile, we gnoshed. And I think we watched TV and played a little poker. Mostly, we drank. I think. I don't seem to recall much of that evening. Except that Dick Whats-His-Face looked and sounded like death warmed over. What the hell was up with that?

So Midnight rolled around and we opened the $40-50 bottle of Champagne (I said "good" not "great"). My mature palate would say: "Yum". We finished it and before you knew it I was dancing above Dani (Laying on the couch) too Atomic Dog by George Clinton. The stereo was turned up to max, not sure if any neighbors were around. Needless to say, Dani was kind of shocked. i hadn't really listened to anything funky until now. I had removed Skinny Puppy and Iggy Pop and replaced them with P-Funk, James Brown, and his Bro' Chuck Brown. :)

Dani got up from the couch and we danced the night away. Danced until my legs couldn't move any more. Went to bed around 2. Shut the ringers off.

I think we woke up around 10. Dani wasn't feeling so well. I felt fine.

Moral of the story: Even when mixed, Cheap Champagne is deadly. And Dick should probably retire.