Sunday, April 30, 2006

I Feel Like Ass/Steroid Effects

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

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

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

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

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

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

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

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

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

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

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

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

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


Saturday, April 29, 2006

4:18PM, 4/28/06

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

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

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

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.

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.

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.

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."

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.

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.

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


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

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

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

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

Friday, April 28, 2006

Fuck Cancer!!!!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, April 20, 2006

Landlord/Tenent Battle

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

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

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

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

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

Some Lawyers actually have Souls. ;)

The trouble with Dani's apartment began in August.

Saturday, April 15, 2006

More Chemo -> More Side Effects -> More Drugs

The drugs I needed today to counter chemo:

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

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

my drug intake has increased gradually after each chemo.

Until then, peace.

Friday, April 14, 2006

No Chance For 100% recovery? Chemo Side Effects

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

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"


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!


Below are the side effects, Short and Long Term.

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.