Thursday, August 30, 2007
As you may recall Thursday, my counts were 1.4 and 460. That's 1400WBC/microliter and an Absolute Neutrophil Count (ANC or "Absolute") of 460. I need an ANC of 1200 before I can get chemo.
A normal healthy human has 5,000-10,000 WBC. 50-70% are Neutrophils.
I went in for labs on Monday. My counts were 1.8 and 700. Cell growth isn't linear so I was hoping for the best. In the meantime, the RN had to get my info so she could do battle with Insurance and get me Neupogen. I was on it last time. It's a recombinant colony growth stimulator. I inject it subcutaneously and it helps my WBCs rejuvenate. Its big bucks.
Monday night the Nurse calls, says I got the Neupogen but it will be delivered by Icorps health (cheaper?) to my door. They canceled my Tuesday appt with my Doc and rescheduled my chemo from Thursday to Friday, hoping my counts will be fine by then. In the meantime, my doc also convinced the PI that I should have chemo on Fridays only. Day 22 instead of 21. This way I get to see my doc the day of chemo. Makes me and I think my doc much more comfortable.
And My mouth sores suck ass and are getting worst. But it is the night before chemo. So I raise my glass of usige beatha and toast.
Saturday, August 25, 2007
1 cycle down, 5 to go
2 infusions down, 10 to go
2 weeks down, ?
Friday, August 24, 2007
I wake up in horrible pain. A toothache. It had been bothering me before so I made an appointment for Monday. It was a crowned/root canaled tooth. Or "dead". I thought maybe the gum was being bothered by the chemo. The pain on Thursday had me believing in Hell again. I called my dentist and they squeezed me in at 230PM. By the time I left I was screaming bloody murder and punching our bathroom/tiled wall. I was ready to cut into my Gum and relieve the pressure/pain.
An excruciating X-ray revealed a massive infection under the "dead" tooth and in one of the canals. The root canal was done the winter of '99-00. Nice job, fuck heads. The X-ray was excruciating because of all the crap they put in your mouth and bite on feels really horrible when you have mouth sores.
We go with a "retry". Redo the root canal instead of pulling/implant or doing a bridge. at 1300 it's also the cheapest method. they calculate insurance will pay about 550. Yay. Glad we're made of money and have no other expenses.
The doc gives me a few shots of novocaine and asks if I want Nitrous. I decline. they aren't trained anesthesiologists. That's why sometimes, on a rare occasion, someone dies at the dentist. And as I've "dabbled" in anesthesia......lets say I know how precarious the patients position is. So I decline but I'm nervous. I can still feel the tooth. My doc loads me up. I think I got 8-12 shots total and then they go to work. For a change, its pain free. The procedure might have been an hour. The relief I feel is indescribable I went from a "10" to a "0" on the pain scale. I almost hugged her. She gives me a script for amoxicillan and I'm out the door. The infection was so large that she left it open so it could drain. Yummy. I did smell it once the drill reached the little buggers. Yummy x 1000.
Wonder why the infection exploded then? Dani also wondered. This happened last time I went through chemo.....
I get the script and it calls for 4 pills right away then 1 every 6 hours. So at 6PM I chug 2000mg of Amoxicillan. Or does 2grams sound larger?
~8PM I'm feeling a toothache. She didn't give me any pain killers. I pop an Oxycodone (Percocet) left over from Surgery.
~15min later I feel a rush of warmth and start sweating.
I grab a thermometer. 101.2. Dani gets off the phone with her mom. I take my temp again. 101.4 FUCK!
during chemo a fever sends you to the doc or the ER if its after hours. I call the on-call anyway. She sends me to the ER. For some reason we drive. stupid. We're kind of in a state of panic. once there they take my vitals. I'm down to ~99.5. So we wait. I hate waiting. I'm so tired of waiting. I tell Dani I'm thirsty and feeling dizzy. She goes up and tells the registrar. I get the next room. It's pediatrics but I get the next room (shhhhhhh. don't ever do that at home, kids). And it's pretty. Unfortunately it's also a big diaper/formula supply room. Oh well. I was tired and wanted a bed.
I won't go through the details of a teaching ER again. Or the fact that its still summer so it's chock full of inexperienced fucks. Or that the student missed my vein twice. That would all be redundant.
The fever disappeared. Several things could have caused it, including taking a massive dose of antibiotics.
however, my WBC (White Blood Cell) and Absolute (Absolute Neutrophil Count) counts are 1.4 and 460, respectively. I'm in the basement. After only 1 cycle. I'm at a High Risk rate for infection. This is my week off from chemo. My weekend off from chemo. Now I have to avoid people.
Into the ER at 8:30PM. Out at 1:30AM.
And my week destroyed.
Wednesday, August 22, 2007
In the meantime I can think of nothing funnier than having a rug shaped like a "D".
Wouldn't it be nice if they could comatize you through chemo? I wanna eat but it hurts. I wanna drink but can't. I wanna crap but its painful. I wanna sleep but it escapes me. My tongue hurts, my teeth hurt, my arm hurts, my kidneys hurt, my intestines hurt.
The pain will spike and I wince. Dani wants to help, needs to help. But there is no relief. I just have to ride it out, a wave of pain. I sit in silence, wincing, sometimes biting my tongue near the sore....somehow it helps. Sometimes I can't remain silent and I cry out. Then it's gone. For the moment.
Comfort escapes me
It's not the bullet but the fall.
Gonna go pop lorazepam, compazine, ibuprofen, and I think some sominex.
Fuck it all.
I'd kill to be wasted right now. I'd kill to wake up in a hospital room, Dani looking down on me, and it be December....Cancer Free...
I'm a selfish fuck.
Tuesday, August 21, 2007
2006 new cancer cases in the US: 1,399,790
2006 estimated cancer deaths US: 564,830
How silly will we look in the future?
Sunday, August 19, 2007
Inner tremor, right foot
High Blood Pressure
We Get to the Clinic and they put us in a room with another dude. He will be the first of two we share the room with. Both have it "easier" then me, in terms of time spent. I will be there from 0930-1600. Takes about 2hrs to make my drugs then 4 to deliver.
Phil's Cocktail (In Order, Based On Weight):
358ml SGN-30 Antibody/Placebo (Saline)
265ml Pegylated Liposomal Doxorubicin
Total = 946ml
We ignore the dude for a while but feel bad and start talking. He seems familiar. Being DC, he is compelled by law to ask us what we do. "OH", he says, "you're Danielle from World Watch. I have all the reports and go to all the briefings." I just roll my eyes. Meanwhile, the nurse misses the vein everyone misses. I so hate that vein. Everyone wants to try it. NO MORE. She gets me in the wrist. I listen to Dani and our new friend talk. So happy I get to sit back. She gives him a card and he's gone. Then some Hoosier (Missouri slang) takes his place a couple hours later. We leave the TV on loud. He calls someone regarding his gun warranty. I think he has a Skullete but I don't really want to look at him.
How does one pee during treatment, you ask? Like everything else, very carefully. Sort of.
Near The end of treatment I ask the nurse if they can give me something for my mouth sore. I'm having trouble eating. After some wrangling ( some asshole wanted me to suffer more apparently) she gets the OK from a RNP on the study team for "magic mouthwash". We thank her profusely. Magic Mouthwash is a catch all. Mine has diphenhydramine and Lidocaine. Yum.
We go to the CVS Pharmacy and pick it up. Insurance won't cover it. assholes. It's $35 for a month(?) supply. Get home, open the box, and there it is: a big bottle of stuff with two tiny powder filled bottles. On the box are instructions:
TO THE PHARMACIST: MIX BEFORE DISPENSING.
What a Fuck. It's not the first time he's been a slack ass motherfucker to us. He's like a disgruntled cashier with a Pharmacy degree. Love CVS (On P st. Next to Whole Foods, the middle eastern pharmacist. ;) ). So Tired of him, I shot off an email to corporate before going back and letting Dani yell at him.
I mix the diphenhydramine and lidocaine in and swirl. Then swig. Hmmmmmm, chalky strawberryish numbing goodness. Drrrrrrooooooooooooooooooooooooooool
I take 5ml/4x/day. I also swish my mouth with baking soda/water every chance I get. I have two Major sores on the right underside of my tongue. After chemo I notice one on the roof of my Mouth. Sunday, there's one on the left of my tongue and both sides of my inner cheeks. It's the tongue sores that suck. I can't stretch my tongue at all. I can't use it to help chewing. Try to conciously not use your tongue while eating. I have to gurgle with liquid after chewing to clear all the food bits out my tongue can no longer help with. It fucking SUCKS!
I can handle the near constant nausea and most of the other symptoms. You might even think everything's peachy when you see me. Mouth sores are hell and I can't feign an Okee Dokee face when they're bothering me.
Sunday, Dani's making dinner. The brandywine tomatoes smell phenomenal. I beg her for a taste. Maybe I'll be OK. I pop a bit into my mouth. Pure succulent heaven. Then I feel it. Like acid on an open wound. I chug ginger ale to neutralize it.
Why'd this have to happen in Summer?
Thursday, August 16, 2007
See The diagonal red line, middle right? That's my vein. Just upstream, diagonally left and center is a bruise/rash. And maybe just above that and touching (below the mole) you can see the injection site. It hurts on and off. The vein discoloration is most likely chemo but I have to be vigilant for septicemia. Five days post treatment. I may need a port. I'll only get it if they say my veins are being obliterated. I don't need a constant physical/visual reminder of this shit.
I cut back on my anti-nausea meds on Tuesday. Cut off anzemet after 2 days, replaced it with compazine, fearing I wasn't getting anymore for the month. The low level nausea isn't going away. My appetite is non-existent, my mouth has sores, maybe a clot (black spot), I feel dizzy sometimes. I was constipated for the first few days, passing the occasional brick. My first chemo wasn't this bad. Not right away. I didn't expect the second time to be worse. It started to get to me.
Sometimes I get this throbbing in my neck, like my pulse has shot up and all the blood can't get through. Sometimes it causes a headache, sometimes that travels to the base of my neck. This one started before chemo and after surgery.
Dinnertime. Hamburger with cheddar, tomato, sauteed onion. Shoestring FF, black bean and tomato salad. Some of my favorite comfort food. ALL Organic, all local ('cept the fries?). The burger was wonderful. All of it wonderful. I was having a hard time "clearing my mouth" due to the major sore under the back of my tongue. Then I started to fell a surge of nausea after each bite. Nothing big. Just a slight increase. I struggled a bit to take each bite. How much of a struggle? Don't now. Perception is key here. Went from really enjoying my meal to having to focus on taking a bite and keeping it down. the degree in change might miniscule. But the perception is huge. From enjoyment to non-enjoyment. Is there a degree of difference in between?
All within the first week of chemo. It was too much.
I finished up, cleaned my plates and stole to the bedroom. Laid down and broke down. As quietly as I could. Hoping to not upset Dani. Fat chance I had. She came back wondering if I was in pain. Don't think I've ever just imploded like that. I could barely speak, asked her to hold me. And there we lay. Then she got up and gave me what I needed most. A Mental rallying. A talking to, a talking with, battle cry after battle cry. I can not do it justice. We will fight the good fight and we will win. Fuck you cancer.
Thank you, my beloved.
Sunday, August 12, 2007
Warmth & shortness of breath continue into Sunday. Didn't feel nauseas really. Afraid to pop an Anzemet due to potential supply issues. Afraid not to. So, after some coaxing by Dani, I popped it. Vein doesn't look so good at entry point. Skin Red/rash. May have been obliterated. Mediport may be an most unfortunate neccesity.
I've had no appetite since chemo. I eat to keep my strength up.
There still seems to be some confusion. let me clarify:
Q: New Cancer?
A: This is the same cell line that tried to kill me before. A PET scan early after treatment picked up rapid cell growth. Which is not unusual after chemo - the bodies trying to rejuvenate. Remember - I presented with late Stage IV Hodgkin's. It had traveled throughout my lymphatic system, attached to Organs, growing on them as well. My body was wracked with B-Cell Tumors. The CT scans probably couldn't penetrate the residual scar tissue left behind by the larger dead(ish) tumors. Some cells survived and proliferated like cancer cells do. I hate this fucker
Q: How about alternative Therapies?
A: You wanna take that gamble with your life. Have at it. Tell me how many people you know that have done it. And does insurance cover that shit? Are you sure you would do it? I didn't think twice.
Q: Sugar feeds cancer. You should stop eating sugar
A: Cancer feeds Cancer. I can't stop it or slow it in any measurable way by cutting out what sugar I consume
Q: You should see a Nutritionist
A: I married a Nutritionist.
Saturday, August 11, 2007
I'll label these as such so y'all know they'll be the daily minutiae of how I feel and can thus ignore them. I feel compelled to keep better track. Lats night popped a Lorazepam at 1030 and a compazine at 1100. Then to bed. Woke at 0345. Wide awake. Not really upset by it. Not really shocked. Had a slight headache. Dani would be up soon for the Farmers Market. Hung out. and decided I could try and go back to sleep. Slept from 0430-0800 with a few waking moments. Felt a little nauseas. Slight headache. Might be dehydration...might need to flush toxins still.
No appetite. I really didn't expect the symptoms of chemo to hit this fast. last time I recall it as an accumulation throughout. Having a hard time drinking Coffee. Popped a Precious Anzemet at 0800. My Precious, need my precious........where's my precious? Precious? Hopefully it'll restore my appetite. My vein is almost completely healed. Hope they can take it. I so don't want a port.
I should mention last night that before popping a Tylenol I paged the on-call onco. You really need to be careful about which OTC's you take. I was chastised for taking the wrong one during Hodgkin's 1 (H1). The on-call was unfamiliar with my regimen but thought either should be OK at 600mg/6 hours only. [sarc]I feel relieved[/sarc]. At least she was absolutely honest. I believe Tylenol was what I was allowed last time so I stick with it.
Also last night my anger was hard to controll. I was going near ballistic at all the fucks in Whole Foods. It didn't help Dani that the drive there was a bit of an adventure. I forgot we were going and the I almost turned down a one way. My mind was a haze.
At home, after dinner, she tried to entertain me. But I didn't want any of that. She went through our movies, our games. I lacked the ability to make any decisions. Then I got really angry when I couldn't find my H1 folder for the on-call number.
I feel like my mind is going to mush.
I feel so sorry for putting Dani through all this again. She hates when I apologize for It. Her Mom called last night and I talked to her for a bit. I apologized to her for what I was putting them through again. I know what everyone's thinking but it doesn't change how I feel and it was weighing heavily on me.
Love You all.
Friday, August 10, 2007
June 26th - PET scan results (atypical cells in neck) discussed with Oncology Doctor. Doctor discovers swollen Lymph Nodes in Left armpit through palpitation.
June 28th - MRI Scan for pinpointing lymph nodes.
July 1st - Consultation appointment with Surgeon
July 6th - Surgery - Lymph Node Biopsy
July 13th - Oncology appointment - Pathology confirms Cancer Relapse
July 16th - Stitch removed from neck. Surgeon relieved I'm aware of the results.
July 20th - Bone Marrow Biopsy
July 31st - Sperm Donation. Diagnosed Fertile
August 1st - Bone Marrow Negative
August 3rd - Second Sperm Donation
August 2nd - Heart Sonogram. Signed Consent
August 6th - Full Body CT Scan
August 10th - Chemo.
Sixty days since my abnormal PET. 4 weeks since confirmation.
I get there at 9AM. And head to The Clinical Research wing. Used to be inpatient. Private room with restroom, Bed & Cable! Blood draw and wait for results, drug mix. I think I started around 1130.
Pre-meds; Anzemet (cancer ant-nausea) and Dexemethesone (Steroid). Yay. All infused.
What Exactly, do I have?
A Research RN popped in to my room while I was getting my pre-meds. I asked her for a copy of my CT, standing order for blood draw, what not. She comes back with that, plus my MRI report. How nice. I look through them. I notice the ICD-9's. CT has 202.8. MRI 201.9. I pull yesterdays physical from my folder (always have your folder): 201.9. Typo? Or are we all not in agreement of what we've seen and what I have? I try to maintain my cool. Dani's in the room reading. And asks if everything's OK. "Sure". I'm plotting. I need this frikken clarified before they start filling me with toxic shit that might do nothing for me. I wait for the RN to come back. Hopefully she'll understand without me needing to spell it out and needlessly panicking Dani also.
me: I'm sorry. My ct has a 202.8 diagnosis and my doc says 201.9. I think I need that clarified. For peace of mind
Numbnutz: I'm not sure of the difference?
I stare at her, hoping she'll understand and just go get it clarified. She doesn't. that's just wishfull thinking. Course no. Post-doc. Brain full of everything but patient sensitivities.
Me: Well one is Hodgkin's. One is Non-Hodgkin's Lymphoma. Dani turns white. I turn to her and say "I'm sorry." Then to the nurse: "I'd like that clarified, please." She leaves and we wait. What if? What if? She returns a short while later and says "typo". Some fucking typo, numbnutz.
Infused with anibody or placebo. 1ml/min for 30 minutes. Caution. Then given the rest faster. I start to feel symptoms from the Anzemet.
The Nurse then does a slow bolus of the first drug (V), then I get infused with "G" & "D".
Done at 4:30. Fatigued, tired, dizzy, unfocused, annoyed, vein is slightly bruised, above and below entry point. We leave. Kind of laughing. I believe we are both surprising our feelings. It's all so fucking surreal.
Popped a compazine at 530. preventative nausea.
Popped a Tylenol at 8ish.
Starting to feel some muscle pain in thighs around 9. Sore throat around 10. They said this was less toxic than ABVD. Doesn't mean less side effects, eh?
1 done, 11 to go. If Insurance doesn't authorize more anzemet I'll need to look for alternattive anti-nausea medication. I Love Brownies....
Thursday, August 09, 2007
I start tomorrow.
Gemcitabine (G), Vinorelbine(V), & Doxorubicin(D). And the anti-cd3o antibody SGN-30 or the placebo. Yay.
GVD is not FDA approved for Hodgkins and only "D" has been used. I took "D" for Round I. It was the "A" in ABVD (using generic vs non-generic names depending on regimen is the source of confusion).
Saw the Research Coordinator (RC) Nurse, then my doc today. I signed a HIPPA (Health Insurance Portability and Accountability Act) ,so they can look at any future records, and the Protocol. Technically, I have had tests and appts while on study. So I back dated the documents per the RC's request. "Back dating". Brings back memories for some, eh? Makes me think of Ben. LOL!
My doctor was quite displeased with the RC RN. Her calender was fundamentally wrong. My chemo is 21 days including a week break. So chemo on Day 1 and Day 8. The next round starts on Day 22. She was starting me on day 21 which was staggering my chemo day. She was also not scheduling me for labs on my off week. My Doc called her as I left the exam room. I love it when she gets pissed.
Also Filled my scripts this week. Sort of. Got my compazine & Lorazepam but insurance only "covered" four Anzemet's. "Too" expensive - cost them ~240 for the 4, 35 for me.
But the bottle says "99 refills"? The drug may just be for pre-chemo. Meaning I'll only need 12 total. I'll have to straighten that out tomorrow.
I need a Lorazepam.
Not sure what tomorrow is gonna be like. But I'm thinking it won't be pleasant. Emotionally. I remember walking out of the Hospital, arm in arm with Dani, after my last treatment. April, 2006. If I could guess, I would say it was 4/27 at 4:29 PM. I'll check it later. I can't describe the feeling. We were done. We won. It had been such a long fight. It was such a satisfying victory. Quite and so dignified. We walked quietly, letter our minds absorb the moment and all the battles. How sure we were that I was done. How good that felt.
I'm not looking forward to the walk out tomorrow and I know Dani is not, either. But I don't regret my feelings. And will think the same thing in November. When we take that final walk out of chemo. We will celebrate our victory in silence again.
Wednesday, August 08, 2007
To be honest, I feel fucking fabulous!!!!! I have no cares right now. I feel stoned outta my mind and all is wonderful. It's a beautiful world we live in......a sweet romantic place..........LOL! This euphoria is indescriable, and so needede.
For weeks I've been tweaking. And now i feel fine. Everything else can go fuck its self.
Y'all are beautiful. Life is beautiful
Monday, August 06, 2007
Went in to sign consent form for study participation. Then I was sent up to have a echocardiogram (sonogram) of the heart. Blood drawn. Vitals taken. I'm 120/110 (stress). Vetoed, with the help of my Dr., my appointment for a Mediport on Tuesday. Today, Monday, I had a full body CT scan and the research nurse asked me to "think about" getting a mediport, under the advice of the Head Infusion Nurse . Mediport is surgically implanted delivery port. They never need to search for a vein after that. You have to be knocked out for implant procedure.
They wanted me to have one the first time around and I refused. The nurses were OK. We are suspicious that they want to do it b/c it makes their lives way easier. The chemo can damage veins and they warned me about a specific one but I'm gonna do some research. Just don't fully trust them. I believe the Infusion nurses relaxed once they saw my veins on the first go around. Hopefully I'll be OK. There's something very demoralizing about having a port attached to me the whole time I go through chemo. It's a constant reminder that we don't need.
Update radioactivity 11/05-8/07:
1mSv = 100mrem
PET = 7mSv
CT = 10-12mSv (whole Body scan)
MUGA = 8mSv
1 MUGA = 8mSv
4 PET scans = 28 mSv
8 CT scans = 80-96 mSv
Total = 116-132 mSv
Background radiation exposure in the US is ~3mSv/year.
A chest X-ray = 0.02mSv
1 CT = 500 x-rays
1 PET = 350 x-rays
1 MUGA = 400 x-rays
5800 x-rays and counting
Now I have to go and see what GVD is as opposed to ABVD
Thursday, August 02, 2007
Another Doctors appointment. Only this time Dani would not be with me. Although it was at 25th & M, NW and close to her office, she felt she couldn't go. And was adamant about it. No biggee. I walked to the bus stop and waited. A few minutes passed and a Bus approaches. It's big digital destination sign is flashing "EMERGENCEY!" Followed by "CALL POLICE!" What to do? It stopped for me so I got on. With a little trepidation, I'll admit. The few people on where very relaxed, one on a cell phone. So I relaxed. The sign was obviously broken. Post 9/11 World is much more fun, eh? Except this bus was getting stopped nearly every block by concerned citizens and by buses going the opposite route, twice. That was just damn annoying.
Off the bus at Dupont Circle. I have to hoof it ~.5mi. I arrive and am the only patient. I wondered if they do that on purpose? I fill out the requisite forms and wait. I notice they had awesome Magazines! A Traveler with an article about restoring the US Plains ecosystem ("Buffalo Commons") and a National Geographic with a great article about the Finger Lakes (NY). I wanted to take 'em. I vote it Best Doctor's office for reading material and recommend everyone go there.
Soon, the doctor comes out and looks at the forms. He tosses one that we don't need and hands me a consent form the Admin Assistant forgot. She must be new. He takes me back and shows me the room. All I can think is "no way. It's too small. Too sterile. I knew I should have had a drink or two before I came." he shows me the specimen cups and the magazine rack, asks me how long I've been deprived and leaves. there I am in the tiny room:
Oh well. I spread the surgical cloth on the chair, grab a cup, label it, grab some magazines, and take a seat.
Forward View from my Bank Chair:
And to the right:
And on the door, out of view, are hooks for clothes.
Playboy, Penthouse, and Stuff. I laugh and think "Pictures of Nekkid and not so Nekkid women? I'm not 18. Next time I'll bring my own material. The pages are quite tattered (LOL) and I put that observation right out of my head. Luckily, I have been Master of my Domain since Friday and I am, if i can admit, a bit of a horndog. And I think being in that room, at a doctors office, for the purpose at hand (pun soooooo intended), was a bit of a turn on. At least I was wearing shorts. I'll spare you the rest of the details. Unless I get comments asking for more. ;) :D
I should add it's not as fun as one might think. The room isn't sound proof and the cup is small so you have to kind of stop and make sure you don't miss. Especially if you're worried about the outcome (they just kind of...come..to me as I type. I swear!) And it's not exactly my first choice for location. So, while I can't say I rushed myself, I certainly didn't take all the time I wanted. Still, if there is no stimulation going on during the point of no return then it's kind of a disappointment. It's sort of an anti-climatic climax. But I'm a guy (and maybe an unusually horny guy) so I can't say I wasn't enjoying my time there either. If I can steal and modify a movie line: "It's kind of like pizza. Even when it's bad it's still kind of good."
And certainly it's the best type of Doctors appointment imaginable, no?
So I finish up, go out and ring the buzzer to the lab. the doc comes out, puts gloves on and takes the sample. He wants me to wait. I haven't had an analysis ever. Chemo might have left me sterile/in-fertile. He can have a decent analysis in 20 minutes and refund me.
I go back to the room. There's a couple waiting. I smile (my wide kind of creepy/psycho smile) and nod at them, thinking they must know. They must know that I was, as Dani's friend Miyun put it; "jerking off into a petri dish." I was oddly amused by the whole thing. It's a complete fertility clinic. I sit and call Dani. She says "Your done? It's only been 30min??? Yes. I'm stroking (again, I really can't help it) my ego. i thank her and explain I'm waiting. I pick up the mag and start reading about Buffalo commons again. having difficulty with it. Sterility scares the crap out of me. What if I'm sterile and I need a Bone Marrow biopsy? I might as well not exist. I try not to think about it. After an agonizing wait he comes out.
"Your sperm is fine and there's plenty of it. See you Friday" I thanked him and the receptionist and walk out, chest puffed, Cock of the Walk (just so frikken easy).
No, I didn't shake my Doc's hand before I left. And for some reason he didn't offer. Wish I had a good cigar. Or at least a cigarette. I felt a little tired ;) but so alive. Humor aside, this weighed on me heavily. It was a huge psychological boost for me. Did I dare dream my Bone Marrow was OK? I tried not to think about it. For fear of jinxing myself.
I need a drink.....
I get to do it again on Friday after I'm all charged up again. This time I'll walk in and out like Cock of the Walk. kind of like when I used to buy condoms. Trying to not so subtly let everyone know "Yes. I'm having sex." This time it'll be "Yes. I'm fertile as hell. I can do anything. Can I help you?". Men can be such guys, no?
BTW - while insurance will pay for Viagra, it does not pay for freezing Sperm. Draw your own conclusions. They want at least 2 samples. $250/sample plus $30/month storage. We don't really have that kind of money. So a very special thank you to my Mother-in-law for helping out (Make your own jokes).
Honestly, though, it was a huge moral booster and psychological victory.
Friday came and went. Unfortunately I got the same room with the same reading material. I was feeling kind of bored so I didn't spend as much quality time with myself. But overall I would say I had a hard day at the office.
Wednesday, August 01, 2007
Cancer Patients, Lost in a Maze of Uneven Care
The first doctor gave her six months to live. The second and third said chemotherapy would buy more time, but surgery would not. A fourth offered to operate.
Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. The months she had hoped to spend getting to know her new daughter were hijacked by illness, fear and a desperate quest to survive. For the past year, she and her relatives have felt lost, fending for themselves in a daunting medical landscape in which they struggle to make sense of conflicting advice as they race against time in hopes of saving her life.
“It’s patchwork, and frustrating that there’s not one person taking care of me who I can look to as my champion,” Ms. Pasqualetto said recently in a telephone interview from her home near Seattle. “I don’t feel I have a doctor who is looking out for my care. My oncologist is terrific, but he’s an oncologist. The surgeon seems terrific, but I found him through my own diligence. I have no confidence in the system.”
It was a sudden immersion in the scalding realities of life with cancer. This year, there will be more than 1.4 million new cases of cancer in the United States, and 559,650 deaths. Only heart disease kills more people.
Cancer, more than almost any other disease, can be overwhelmingly complicated to treat. Patients are often stunned to learn that they will need not just one doctor, but at least three: a surgeon and specialists in radiation and chemotherapy. Diagnosis and treatment require a seemingly endless stream of appointments. Doctors do not always agree, and patients may find that at the worst time in their lives, when they are ill, frightened and most vulnerable, they also have to seek second opinions on biopsies and therapy, fight with insurers and sort out complex treatment options.
The decisions can be agonizing, in part because the quality of cancer care varies among doctors and hospitals, and it is difficult for even the most educated patients to be sure they are receiving the best treatment. “Let the buyer beware” is harsh advice to give a cancer patient, but it often applies. Excellent care is out there, but people are often on their own to find it. Patients are told they must be their own advocates, but few know where to begin."
No confidence sums it up well
19 days since Confirmation
12 days since Bone Marrow Biopsy
Yesterday, to mark the 50th day since my PET scan, I call the RN case manager (the doc's goto Nurse) and the research RN and ask the usual question: WTF? They didn't call back.
This morning Dani asks if I'm gonna call. I say "Fuck it. Fuck it all." Tension rises. Fucking Cancer.
She calls the Case Manager and asks "WTF?" I'm at the computer, my back to Dani and there's a long silence. All I can think is "Fuck. Maybe I'm being paranoid? Fuck"
I turn to look at Dani. She says "There's some unanswered questions. They may have to do another biopsy."
"Fuck!!!! What does that mean? Is there another cancer present? Is it Leukemia? Did they Fuck it up? I would have killed to have my bone marrow clean. Fuck! Fuck! Fuck!"
The RN is reading the report to Dani. The look on her face is not good.
Just then my Doc calls. She starts to tell me I'm going on study. i ask about my Bone Marrow. She asks, confused, if her RN called.
I say "My wife is on the phone with her and there seems to be some "unanswered questions" regarding my bone marrow. My doc says "I think every thing's OK. let me pull up the results."
Dani is off the phone, staring at me.
"Yes. Your negative. They had to perform some extra stains but every thing's OK. We'll get you in her tomorrow and you'll start treatment next week."
I get off the phone and tell her my bone marrow is fine. She slides to the floor, cursing the RN, crying a little. I pour a drink. The last of my Makers. Fuck it.
Did you know Case Managers often know dick about Medicine?
Fucking Assholes. Fucking Cancer.”
The research RN called. I go in tomorrow for a MUGA, hopefully. Told her Friday is out due to another engagement (more about that fun later). get a CT scan on Monday and start chemo next week.
I feel so relieved. I really wanted to keep my bone marrow. It's a huge psychological win. It is me, after all. And I still really like me.