Friday, March 24, 2006

Taste Buds, Hair, My Poor Laugh.

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

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

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

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


Thursday, March 23, 2006

Food Purgatory

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

Wednesday, March 22, 2006

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

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


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


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

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

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

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

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

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

On that note:

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

Peace and I love you all.

Tuesday, March 21, 2006

Food Hell III

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

Monday, March 20, 2006

Food Hell Part II

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

Sunday, March 19, 2006

Chemo Causes Cancer

I'm on a roll today, eh?

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

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

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

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

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

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

Myeloid cells are precursor red blood cells.

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


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



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.



Saturday, March 18, 2006

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

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

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.

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!!!!!!!


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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

They did not stop in a timely manner.

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

She did not stop in a timely manner.

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

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

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

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

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

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

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

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

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

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

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

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


Thursday, March 09, 2006

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

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

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

I'm at a loss for words.

Friday, March 03, 2006

Dr. Death/Cancer Benefit/Nodular Sclerosis

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

It's killing me. LMFAO!

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

Update time:

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.

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?


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!!!!!!!!!!!!!

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