Tuesday, April 29, 2008
Now I'm back with my new boyfriend, Seattle and I missed him.
I started a new chemo cycle yesterday: 6MP, radiation, and spinal methotrexate. The spinal tap went a little rough--it took many attempts to get to spinal fluid. As a result, my lower back is pretty sore. Radiation is not much to write home about yet. It takes about 2 minutes and side effects (if I have any) won't appear for a while. So anyhoo, yesterday when I got home I was like, "damn, my lower back HURTS where someone was poking me with a huge needle... I should take Vicodin since I haven't even looked at it in about 2 months." I went to my closet to discover that someone has been regularly hitting my hydrocodon. Hmmm. Then I checked my Xanex. Also severely depleted. I'm pretty 100% sure I know which of my roommates has been taking my meds and it's like, "shit." What am I supposed to do? This same person owes me $215 in back utilities. But who steals meds from someone who has cancer AND is their friend AND is their roommate? That is just so fucked up.
Here is the truly awesome news of this post: I got my period again! Even after the 6MP overdose (and 6MP is a fertility killer) my body, my ovaries are still fighting. Since not being able to have kids is one of my greatest fears, and it's pretty rare to menstruate mid-treatment I am feeling really positive about what this all means. March left me a little shaken--our bodies are breakable (we need blood cells) and fragile and it sort of undermined my confidence in my physical body to take everything in stride, but this has definitely restored much of my confidence.
Final Assessment of Life This Week: Totally Awesome
Thursday, April 24, 2008
I am starting full-cranial radiation on Monday along with the spinal tap and of course... 6MP. Supposedly the dose of radiation my brain is getting is small enough that it has a smaller chance than the toxic chemicals they're pumping into my spinal fluid of doing damage to my brain. Those chances are pretty small, but I still don't like it.
Also: I'm famous. My radiologist called a whole bunch of other fancy radiologists and then they all talked about me and how weird this is and what you're supposed to do.
This weekend is going to be Weekend of Denial: Food and Shopping. (We'll rename the other one "Weekend of Denial: Booze and Snuggling") I'm going to Portland and I get to see all my friends and my sister. Hurrah!
Tuesday, April 22, 2008
I spent the day recruiting at public high school. Always and interesting experience. On my lunch break I went to Nordstrom and dropped cash on new jeans. Yes, it made me feel better. No, Nordstrom does not have any cute shoes right now. They do have lots and lots of really hideous high healed/shoe laced shoes. Gross. And no, I did not buy the Hobo wallet I have wanted for the last 3 years even though they had it in chartreuse patent leather. I do have some self control...
Great News: my employer approved an extra 4 weeks of donated vacation time today. Barring any more 6MP-like fiascoes this should see me through to 2009. I might have hair by 2009!
Speaking of my hair, about 1 in every hairs is bravely trying to grow--they are about a centimeter and so sparse that you can't see them unless you get really close to me. They're so cute!
Monday, April 21, 2008
Here is the deal:
I had a tumor—it had malignant white cells
I have no cancer in my blood
I have no cancer in my bone marrow
I have no cancer in my spinal fluid
I have no other tumors
Apparently, I could just as easily be on a treatment course for Lymphoblastic Lymphoma as Lymphoblastic (same as Lymphocytic) Leukemia. What the fucking hell.
If you didn’t know, I hate that I have cancer. I hate chemotherapy and what it’s doing to my body and lately, my metabolism. There is nothing in my life so far that I would do over, or have be different—except this.
The good thing about this radiologist (who said a bunch of scary radiation stuff) was that she was super excited about my prognosis. She was like “wow! This is great! It’s amazing that your blood, bone marrow and spinal fluid are all normal! You are going to be fine!”
I am also feeling incredibly surly at work. I am beginning to hate it. But I have nothing else structured going on and I’m terrified of free time after the hospital. I have a few legitimate things to be angry about (same old, same old) but a lot of the nastiness I’m spewing is pure spite and frustration and it’s unfair and I NEED to stop talking shit.
The weather is so cold. Our house is freezing. It’s going to rain all next week. Fuck you, climate change.
And bills! This winter it cost a bitch and a half to heat the Mansion. However, at least these large bills are split 7 ways. You know what isn’t split 7 ways? My cancer-y bills. I’m sure they add up to less than 1% of what my treatment is costing, but that’s still a lot for me. A pathology test here, a non-network infectious disease specialist (who I was too delirious to have any control over) there… My entire tax refund is gone. And here the major stress: the billing dept for my primary care doc, my insurance and I have all been going back and forth since December over a series of charges that insurance should cover—as long as PacMed (the clinic) bills them correctly. Every time PacMed would send me a bill, I would patiently call and explain to them what they needed to do to get paid and every time they said “Oh, we’ll send this to the insurance specialist and get back to you…” So I’m on top of things and I am waiting for them to “get back to me” but instead they SEND MY BILL TO COLLECTIONS. WHAT THE FUCK.
Never go to Pacific Medical Centers—they are a bunch of unprofessional, cheating, lazy, careless ASS HOLES.
So once the bill is in collections you have no choice but to pay. Pay now. Or they take a big dump on your credit report and also charge you 12% a year on the bill. So that was $500 down the drain. It’s up to me now to wade through insurance BS to reclaim this money. Do I have the time and emotional energy and guts to call my insurance company? No. I’m scared. I don’t want them to look at my file. I’ve wracked up about 130K in bills so far and I’m terrified that someday, for some reason, they will just stop paying. So I try not to interact with them at all. I realize this is stupid.
And those are most of the reasons that I am feeling a little overwhelmed tonight.
Sunday, April 20, 2008
The good news is that I'm starting to feel stronger. I've been trying hard to walk places, to go up and down the stairs as much as possible, etc. Yesterday I spend all day walking around and doing mild manual labor. I am SORE today, but happy.
Q-Rachel wants to go shopping today. The apocalypse must be right around the corner.
Wednesday, April 16, 2008
Tuesday, April 15, 2008
I went back to Dr. K after my "week off" and guess what? I get another 10 days off! My platelets are still too low to work with, but they are coming up. I only need like 20, 000 more or something. I also was relieved to hear I'm still slightly anemic. While I've been pushing myself really hard to put on some of the muscle I've lost, it's hard to notice that anything has happened in the last week except that I've gained 5 lbs of... what? Fat, I'm pretty sure. Whatever. If I'm anemic, there's a chance that part of why it's so frickin' hard to walk up the stairs is because I don't have enough oxygen in my blood.
I meet with the radiologist on Monday and plan on starting radiation on the 28th. I start chemo again (spinal taps and oral drugs) late next week. I have to 6MP again which makes me nervous, but I'm taking 90% less, so it shouldn't shut things down this time around. Are you tired of hearing me talk about cancer? I just have one more thing to share. There's a doctor/physical therapist who is part of the oncology group that does PT/work out regimens for cancer patients and I am going to go see him next week. Hopefully he'll help me get my active-on.
Well, the only other thing of note is that Oasis was on the radio this morning and I decided to re-devote myself to What's the Story, Morning Glory?
Oh, and if you're getting married in September and you want me to come, tell me now because I have 3 freakin weddings to go to already!
Sunday, April 13, 2008
But. This little break has given me a chance to return with gusto to "normal" life. For instance, I put in a real 40 hour week at work! And I have a work-plan. And my boss was really nice when I sort of manically showed up and demanded to be put in charge of all of my programs and swore I would never be sick again... I work with nice people who are patient through my sick-times and my obnoxious-times. Here is something I realized about work: I am the second most senior member on my team of programs due to extreme turnover! Shit! I should use that as leverage somehow...
So back to how I lead a normal life. On Friday night, I went to see the Avett Brothers at Neumos with my roommates. I saw them in September at Bumbershoot and loved them so much I bought two CDs. Since then, they've been on constant rotation on the kitchen stereo and at work between me and JK's offices. Seeing them in a venue like Neumos as opposed to a Bumbershoot lawn was so incredible. They are great. They are amazing. I love them. I would marry any of them. Right now. Or make out with any of them. Right now. Maybe it's the lack of drugs suppressing all of my hormones or maybe it's the raw sexiness of the Avett Bros but I am more interested in boys then I have been in about 2 months.
Fittingly, I went to a PARTY last night with Julian and Lena and even though I was the designated driver and even though I sat at the breakfast nook for the entire length of the party entertaining various guests, it was really fun to be out. "But Jessie, don't you feel like a freak among your peers what with your missing hair and Hickman?" Yes, yes I do. I rocked the Avett Brothers bald (concerts=hot, bald=better airflow) which was kind of made me self conscious, but yesterday I got my WIG and so I attended this party of my peers NOT BALD. All I'm saying is that I exchanged phone numbers with someone. Alright, it was like that, but still. I didn't look cancer-y.
Today I'm thinking maybe I'll go back to bed with some new books. I finished the 2nd Golden Compass book but our local bookstore didn't have the 3rd. I have a gift cert to Borders, but yuck.
Wednesday, April 09, 2008
Tuesday, April 08, 2008
I went to see Dr. K yesterday afternoon and the good news is my WBCs look phenomenal. I attribute this to my awesome immune system AND the 15 “G shots” I got in my stomach while in the hospital. Did I tell you about the “G shot?” It’s pretty much the ONLY amusing anecdote from my time the H. The shot that they give you to boost WBC production is called the “G shot” and EVERYONE says it with a straight face. And I entertained myself by making lots of little jokes in my head.
ANYWAY. I am down on platelets so Dr. K was like, “I can’t do anything with you until you have more platelets, take the week off[!]” He also told me I was looking very healthy which is what everyone is saying. Maybe by healthy they mean SKINNY since I have lost 8 lbs in the last month. And by skinny I just mean that my ASS is GONE. If you know me in real life then you know that I have a really big butt. It’s something I like about myself and of course, when I buy pants I always buy to accommodate. My butt is GONE. I don’t know where it went. I am devastated. And my pants don’t fit. I’ve been this weight/size many times before and so I have clothes that SHOULD fit, but since before weight loss occurred due to like, running and eating healthy and not lying in bed anorexic* for 3 weeks, my butt stayed its healthy size. Is this interesting? The point is that all my pants are baggy and stupid looking and I’m trying to eat and walk up lots of stairs to get my glutes back.
*Anorexia is the clinical term for not being hungry or interested in food. That was me in the H due to all the shitty antibiotics I was on and the fact that I was depressed.
Welllllllllll. Tomorrow is the first meeting of the Leukemia and Lymphoma Society young adult group and I am tentatively excited about meeting other sick people. Last night I had a mini break down where I was just feeling alone and like no one could understand me. My friends are so amazing and most of the time all I want is to be normal and hang out with normal, healthy people, but then I have moments (like 18 days in the hospital) where I realize I’m NOT normal and healthy right now and that I can’t keep up with my old life. Blah, blah, blah, I just can’t wait to be better.
Oh, and yesterday was Lauren's birthday! Happy Birthday Lauren!
Sunday, April 06, 2008
Today my dad hung all my paintings and pictures in my room. Moving rooms was really beyond me which is why it's so great the the Pereirras and Q Crew did all my moving, my mom painted my room... and today my dad finished the project by helping me decide how to hang all my framed pictures. And then he and 6'3"-ness did all the hammering and hanging.
I've had visitors pretty much every weekend since getting sick and of course this weekend was no different with dad and DP. Next weekend I have no visitors. It's going to be... great. I'm going to the Avett Brothers concert and getting a wig and maybe... spending time by myself? Mmm, I don't know, but here are some highlights from today:
*Julian cleaned our bathroom AND swept the upstairs hall/back stairs!
*I finished the first Golden Compass book (thanks Lizzy for knowing how to cure my boredom)
*My dad is a great dad and his partner is a great step-parent-figure!
*I am about to go to a fun potluck to see lots of fun people!
*I get to go to work tomorrow!
Friday, April 04, 2008
And just like that it was over. I left the hospital yesterday morning and have been trying to acclimate back to real life.
These last 18 days took a lot out of me physically and emotionally. I’m not sure I realized at the time quite how sick I was and how hard it was on my body to run high temperatures for days at a time. Physically, I feel so weak and tired. I lost an amazing amount of muscle mass in my legs. My pants are hanging off me, but it doesn’t look good AND I can’t walk up a flight of stairs without getting really tired. This is the stupidest way to lose weight ever, by the way.
As for my emotional state, I feel wasted. The hospital really brought me down in ways I can’t explain. It was torture. My spirit feels weak which is so much harder to deal with than weak legs. I feel differently about this state of infirmary now. I am a Real Sick Person.
I don’t expect to be Sick for much longer. Being out of the hosp and back at work should bring my endorphins back. If not, my mom, the social worker, and Dr. K have all been making noises about anti depressants and how chemically, this experience really whacked out my brain and I might need some help normalizing… As for my legs, we all know my massive hams love nothing more than to gain muscle mass at alarming speed… it will just be hard work. I hate having to go back to zero.
Today I am celebrating that I am work and I have been here since . It feels so good to have things to do and structure to my day.
Wednesday, April 02, 2008
The hospital is terrible. I really really really hate it here. It has done a fine job of breaking my indomitable spirit and causing what people keep telling me is, "depression." Apparently, I've never been really depressed before. Thanks, Hosp.
The good news: my counts are finally up. I want to leave today. Or I would settle for tomorrow. They're pulling me off all my anti biotics to see how my systems fares on its own.
How did we get here? No doubt the most disturbing part of this month has been the radical turn around from Superwoman to nosediving hard and landing in the H. Why was this treatment cycle so much worse? Why am I such a pansy? Turns out I'm one of .03% of people who is missing an enzyme in my blood that helps metabolize this drug I was taking: 6-MP. Without said enzyme it was like I was taking 10X the chemo dose that I needed. So that's what crushed my counts and for so long. Shout out to Dr. K for figuring that out before I start another 70-day cycle of 6-MP.
That's all for now because most of my thoughts are pretty whiney and I've been trapped in a white box for 2 and 1/2 weeks with little stimulus.