Caution: No Hair here

Chemo sucks, and cancer sucks we all know that. But, what I haven’t yet gotten to bitch about is losing my hair. I mean, seriously, what are the odds? Couldn’t be better odds than the lumbar puncture that had me on my back for 3 days or the monster hemorrhoid that has been ‘living’ with me for a week or so….right?

Guess what? My shit (hair) is falling out … in droves. So much and so fast that maybe I need to hire a coupla migrant workers to clean up. So I now present to you my, somewhat condensed,  time line ….

Again, cancer sucks but hey at least I don’t look like I should work in a carnival ‘in the back” tee hee.

Now Entering … Grumpy

Holy shit. I almost can’t believe myself. With all the drugs and emotions and what not I am being a bit of a douche if I do say so myself. I feel like I am so snippy and nothing is right. Partially, that’s right nothing *is* right. I am neutropenic and all I want to do is sleep, my appetite is shit, I am doped up and I really just want to explode with rage at the fact that I have cancer.

Now that ‘ve gotten that out of the way I’ll say some wonderful things about those family members that are taking all I can dish out and more. THANK YOU AND I LOVE YOU. IT’S NOT ME … IT’S THE DRUGS.

I am hoping it gets better than this; if not I might find myself waking up in the middle of the night with a knife pointed at my face a la Single White Female.

Been a few days

Yeah, so it’s been a few days since I blogged. Mostly because of how I’ve been feeling but also because I have been stuck in what seemed like an unsafe clusterfuck. Things are ok now and most of the problems, I hope, have been worked out. Over stimulus is a big problem I am having right now….

Rhoids are still an issue to which I am taking Dilaudid and Atavan to relieve the pain (hopefully soon this rhoid sill shrink and go away). I am currently neutropenic and can develop a temperature at any time. If I get on that is 100.4 or higher I have to go the the ER for emergency services which I’ll be honest am not looking forward to.

I also think I need to talk with someone that has gone through chemo or has my disease so I can unload a lot o feelings I am harboring inside simply because my family can’t understand or thinks they know a better way… If you know anyone please send them my way. I won’t bite; I promise.

Today,also is the first day sice I have been home that I’ve even felt like working was a possibility. I feel so guilty to my team at work because I am not producing. I’m not doing shit. I hope they understand; I’d love to be working. Hell! I’d even like to be working on those damned tax pages believe it or not. Just please don’t forget about me :-/

I walked today around the block, so at least I got some exercise! Fuck Cancer.

Treatment 1, Day 9: Going Home!

I have to be honest here. I am SOOOOOO looking forward to going home. While I appreciate the extremely gracious staff that has taken care of me; enough is enough. I need to see my house, my son and my home. I need to feel MY sheets and not feel ‘chemically’ any longer. Well today I get that wish. I go home in a few hours provided that 1) I don’t have a temperature and 2) Airtran doesn’t suck a moose testicle.

The idea is to ‘check out’ by noon to catch the shuttle to the airport (an hour away). Plane leaves at 3…2.5 hours and I am home.

My thoughts on the first treatment without having left yet? Yeah, well, it kicked my ass much more than I was led to believe. Shit just hurts all over. I still have my hair but it already feels different and I am sure that will be changed by the time trip #2 comes up.

I’ll reassess once we get home!

Treatment 1, Day 8: Almost Done Round 1!

This officially my last day of chemotherapy for this first cycle. So let me first start off by saying that it’s about goddamned time! This has been an unexpected ordeal for me. Perhaps I was naive but I thought it would be a lot easier. Ok, the chemo was easier than I thought, but boy did this trip start off with a bang. I am happy to almost be 1/6th of the the way through this, but also know that I’ll never really be through it….As someone that never had to worry about my health I have now, unfortunately, been transformed into a hypochondriac.

So, at about 6am we finished the 4th EPOCH bag of chemo and then started the Rituximab. I’ve been told by numerous people (both patients and staff) that this would probably be my ‘wall’. For some reason Rituximab gives everyone issues. So I was mostly prepared for whatever may come; just get it over with.

Siplizumab and Rituximab may be in the same class of drugs but, boy oh boy, are they not the same. With the Siplizumab I just got the shakes/chills, no rash and was done with it. With Rituximab it was an ordeal. Got stuffy, throat started closing off, got a rash, the whole nine-fucking-yards. Fortunately, I am smart enough to not suffer and called those nurses in ASAP. The bag of Rituximab took about 6 hours to infuse. Even though I had my problems they are telling me that I actually did pretty well, considering what they see with other people, so I guess that’s my consolation prize. Wherever I am just glad it’s done.

Next up: Cyclophosphamide; the last drug of this trip!!! We started the drip a12:30 and will only take 30 minutes. Compared to everything else I’ve seen in 9 days this *should* be a piece of cake.

1:00pm

The Cyclophosphamide is done! This bitch is done and I am now 1/6th of the way through chemotherapy. 16.666666666666666666666666666667% of the way there baby!

On another note my roomie that I mentioned earlier has just left to go home. Started out as a real ass, but actually kind of warmed up at the end. He’s 76 and has Hairy Cell Leukemia; been dealing with it for about 15 years he says. There’s something to be said about sharing space with someone that has a similar condition to you. I think everyone in my unit has some sort of blood cancer and seeing people in differing states of mental and physical health here has really helped me solidify my stance that “It could always be worse” … and it can. No matter what I may be facing or dealing with, someone has it worse. This shit sucks to go through, but what else can I do? I can either put my head down and trudge forward and conquer, or recoil back and be conquered.

I get to go home tomorrow!

Treatment 1, Day 5: Cmon! For Realz?

So this morning started like any other this week. Wake up at 5am, have blood drawn, come back and change my EPOCH chemo bag for the next 24 hours. And as has been the case the events went without a hitch and I still persevere side effects for the most part.

However, in today’s rounds my gaggle of doctors (Dr. Morris and Dr. Janik included) gave me the results of my spinal tap that I had last week. No need to be kept in suspense … Of course it’s not good news; why would it be? They say I have abnormal cells in my cerebral spinal fluid; the exact same abnormal cells that I have in blood. this means one of two things. Either 1) my samples got contaminated by my blood either on the way in or on the way out or 2) I have lymphoma in my spinal fluid and will need chemotherapy in my spine.

Fuck! So I take three steps forward then get punched in the ball bag, and I am just as scared as before this all started. What the fuck am I going to do NOW? If I need chemotherapy in my spine we’re talking about having a port put in my head, and Methotrexate infused TWICE A WEEK UNTIL THE ABNORMALITIES ARE GONE! this will be IN ADDITION to all the other shit I have to take. Methotrexate is nasty too from what I’ve been reading so it should actually intensify all my other side effects, and just make me want to roll over and give up the ghost.

I am hoping that it’s a contamination issue, but my gut tells me it’s not. Why would it? That wouldn’t be my normal luck streak

Treatment 1, Day 4: Treatment

Nothing major to report with my first dose of Siplizumab. I did get the shivers/chills as expected but I am so happy that I did not get a rash. Today we start the first of four 24 hour infusions of EPOCH. This is expected to be very straight forward and ‘easy’ to take since it’s a constant infusion over 96 hours and low dose. However, if you’ve been reading my shit at all you know that I tend to skirt on the outside of what’s considered ‘normal’ and always end up with the ‘wow that shouldn’t have happened’ type situations. Go figure.

Treatment 1, Day 3: Here We Go!

‘Ya know. I was in my room for not even 15 minutes and my roommate (whom I will later find out what he’s ‘in’ for) fucking farted. What the hell? So this is how it’s going to be? Greaaattttt!

So most of today will be me rehydrating, trying to eat, taking prep drugs like prednisone, Anticyclovir etc. and then BAM! we get started. I am not as scared as I was but I still cannot walk and still cannot sit up. I am literally scared shitless. I couldn’t shit right now if my life depended on it; thankfully it does not. I think once I can walk and shit I’ll feel much better. Also, I get to piss into a measuring cup for the foreseeable future. ROCK ON BITCHES! You’re all jealous and that’s ok. I get why :-/

Going to take it easy today.

11pm

Siplizumab is getting ready to be started, but first blood work. They say that side effects of this include intense shivering, chills and rash. So first they dope me up with Demerol, Tylenol and Benadryl. This infusion should take about 4-6 hours. Then we start the EPOCH.

11:25pm

I’ve just called both my wife and mother to let them know that we’ve officially started chemotherapy. Wife was asleep and now I feel bad for waking her up but felt it important enough since, well,, you know … and of course my mother just wants to protect me but does so by never thinking negative (read: realistically). Ok, well …. nothing so far. Will report more tomorrow. Thanks for hanging in there; please be getting better; please work!

Treatment 1, Day 2: Did I Make a Mistake?

7:00 am

I’ve got a CT scan scheduled for 10:00am and I don’t think I am going to make it. Last night after I fell asleep I stayed asleep; like in a coma. I tossed and turned all night and only drank little tiny sips of water throughout the night and didn’t eat anything but a single cracker. So, of course I am now severely dehydrated and my electrolytes are beyond fucked. Plus as an added bonus whenever I raise my head above 30 degrees above perfectly flat I get a brain crushing migraine: instantly and without warning. makes taking a morning piss difficult to say the least. So lemme try that…

Yeah, that went interestingly. What do you do if you have to piss, shit and barf all at the same time in a bathroom with no tub? Well, I’ll leave the suspense up to you but I *did* make it back to the bed. This raises the important question: How the hell am I going to get out of here? Sam just reminded me that we have to be outside by 8:15 (I think) to catch the shuttle to the NIH. Uh, riiiiiiiight. I am so afraid to move I just don’t know how the hell I am going to get out there. She’s frantic, I’m frantic and together we’re not getting this done me thinks.

Sam, gets the hotel to offer up the town car they have to get us to the NIH. The only catch? We have to use it and they have to have it back by 10:30. Mkuy.

It’s getting be to like 9:20 and I still cannot gather myself enough to get up and RUN out the door while she checks us out and we get going. This is dire. Should I just call an ambulance? I’ll tell you this…I should NEVER have left the hospital. Oy.

9:35 am

It’s now or never. Give me the bag and show me the shoes … I throw both on loosely and we’re off. Literally running down the hall. My head is POUNDING, but I did it! I got the fuck out of that bed! But now I wait on the slow assed elevator. As soon as I get outside I plan to lay down on the sidewalk, road whatever is flat while Sam checks us out. I feel bad that she has to do all of this while I grip my head. I am afraid that this just became my normal; let’s hope not.

She’s great! I guess while trying to figure out what to do about this she had a lot of time to work out the logistics while the cripple tried to work out the “ifs” She was very efficient in getting our stuff down and us checked out. I can never thank her enough for not asking me to lug shit down. I don’t think I would have made it.

So I’m  laying on the road flat; the only place where my head doesn’t pound and look at my luck … the NIH shuttle just pulled up. It came back early. Yay? Well also my luck … no one else was in it so I got to lay down all the way to the NIH. Perhaps, just possibly things are looking up.

Not so fast…We get to the NIH fine and out of the shuttle fine and into the wheelchair fine but as soon, and I mean AS SOON, as I am upright my head starts hurting. Crying pain. And this time I am getting two extra presents I didn’t have before: Ear popping (I heard things as if they were underwater) and nerve tension in my hands. They were balling up and I couldn’t control them (like severe cramps). Both probably brought on by my now severe dehydration. Oh Fuck.

Fast forward, we get me admitted and into a room (not my official room but one I can lay down in for a while before clinic and a CT). As soon as I saw the bed I muttered something incoherent I’m sure and then got out of the chair in hopped up on the bed. The problem? The bed wasn’t completely ready. Oh well! Unless you plan to mop up a big pile of barf, please work around me. I was so dehydrated that they pushed 2 LITERS of fluid into me in 3 hours, and I was still bone dry. They also gave me two doses of morphine (2cc and then another two later on) that neither were particularly effective past 15 minutes or so; just to give you an idea of my pain level. I have never had pain like this and I’ve been through quite a bit. wowsers.

2pm

CT scan officially scrapped today. Yeah no shit I still have to get upstairs to clinic though. This is where I meet the entire research team and we ‘get down to business’ and signing of the papers and whatnot. They refuse to come to me. Alrighty. Back into the wheelchair I guess. I hope I can hold my shit and make it up there AND back!

3:30pm

I survived clinic only because I got a bed where I could lay down. Felt like such a pussy having to meet a team of brainiacs that are responsible for saving my life in a horizontal position. You know, you never appreciate just how difficult a maneuver a handshake is until you 1) have to do it 10 times and 2) have to do it perpendicular to your target rather than parallel. Adds a whole new dimension of difficulty (think regular Rubik’s cube (3×3x3) vs. a Rubik’s professor’s cube (5×5x5)) … orders of magnitude man, orders of magnitude. They have yet another surprise for me …..

…Yeah I’ve still got to go down to admissions and get my real room. Right now I feel like all I can do is sulk. If I do anything else I will 1) barf, 2) pass out or 3) pass out in my barf. This is not looking good. Defcon 4 people. I didn’t remember anything in the admissions room or singing anything so I hope I don’t have to blog about a missing organ or some tissue removal I agreed to. I am amazed at my ability to find drama where there shouldn’t be, but I am also glad I have a room and I can forget this fucking day too. Tomorrow starts the chemo shit.

Treatment 1, Day 1: Prelims

Way-too-early
Wheww! So after a nutritious dinner of fruit loops, Pringles and vitamin water I am up at the asshole of dawn to get ready for a 7:30 am Apheresis. Should be relatively straightforward … blood in, spin, take WBCs out and shove the rest back into me.

Ok that went ok. They processed 2.25 liters of my blood and took a boatload of my WBCs and plasma. If the rest of the day goes like this then I should be in pretty good shape and might actually be able to enjoy the afternoon with my wife before I go in for chemo, for real. For now, though we’re on our way to sit in the quiet solitude of the courtyard so I can collect my thoughts. The spinal tap really has me in a mind fuck. I am scared of it. Much more than by the actual chemotherapy. Classic fear of the unknown; I’m a girl.

10:00am
This is the test I am the most afraid of. Spinal tap. In theory the test should go just fine but when someone mentions as one of the side effects of a test being paralysis you should be afraid. I was. I’ve got ‘the man’ doing it. This guy is so well known for doing lumbar punctures and bone marrow biopsies that there is seriously a waiting list to be ‘done’ by him. Awww I feel so lucky. So the procedure went without incident and I made sure I could wiggle my toes at the end of it; ‘ya know … to make sure I didn’t end up with that side effect. Now I have to lie flat for an hour before moving onto the next poking station. Fuck this is getting tiring. When we wrapping this pig up?

11:30 am
Ok, lying flat for an hour was pretty easy and went pretty quick but not so fast there pilgrim. What is that? I feel a bit of pressure in my head and feel a little off. “Shouldn’t be anything since no one has ever gotten a spinal headache the same day as the puncture,” I was told. Mkuy let’s move on then.

12:30pm
‘Large Volume’ blood draw. Something about that doesn’t sound too good does it? This is a situation when they cannot get enough blood out of your body by just tapping it with a normal butterfly needle. they pull out the heavy gauge shit and 100, 200 and 500 CC syringes. Pardon me, but it sounds like I am about to get lighter from blood loss. I mean I’ve already had about half my blood filtered to remove those pesky WBCs and now I get to have a buuuuuuunch of blood removed from me wholesale all at once. First bad sign? It took them about 45 minutes to gather all the vials and syringes that would be draining me like an oil pan in a ‘68 mustang. Oof! Second bad sign? The list of labels that they place on specimens is about 100 long (100 individual labels); no shit! Third bad sign? That bit of head pressure I felt earlier is now a full blown headache approaching a migraine. On a scale of 0-10 it’s steady at a 6 and NOW I have to give a LOT of blood. Lovely!

5:30 pm
I’ve given nearly a liter of blood now and that headache is NOT getting better; in fact worse. Total migraine. I feel severely nauseous even though I’ve been drinking this grape juice from hell all day it’s not helping and the thought of food is utterly repulsive. Maybe I should just eat and puke already. I know it’s coming…just a matter of time. Doctor is giving me Percocet. Ok, but I don’t think a pill is going to help me here. Can I get something injected?

Still feeling sick and it’s getting worse. Now I am up to a solid 8. I am not used to being the patient and certainly not being used to controlling the situation. this, my friends, is out of control. Still feel sick and now know it’s a matter of time. What can I do to hurry this up? So much for getting the hell out of here and ‘enjoying’ the rest of the afternoon. I’ll be happy just to get out of this goddamn chair.
Doctor just gave me another pill for the nausea which I then promptly threw up within a minute (literally) of it hitting my stomach. It went like this: “bubble, bubble, fizz, fizz… oh what a relief it…..BAAARRRRFFFFFFFFFFFFF!!!!!!………could have been”. At least I knew I was right, and was nauseous. Fuckers should listen to their patients. Not all of us are brain dead and might actually know what is going on inside us; idano?. Doctors say if I can hold down some liquids I’ll be cleared to go back to the hotel.. Yippy.
It’s been about 40 minutes and I have held down a ginger ale which is great because ginger ale washes out the taste of barf, crackers and grape juice so well; not really.

7-something
In an effort to spare you of all the grueling details we just got back to the hotel. I got sick AGAIN and staggered up to the room and then right into bed. here is where I’ll lie and hopefully wake up in the am for my CT scan. They’re going to want me to drink a ton of barium crap. Good luck with that! Please let this be my low point.

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