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Tuesday, April 26, 2011

What did you do this week?

It seems weirdly fitting that I've been working on the same post for a nearly a week and I arrive this morning to a blank slate. Good thing I've just had a nice tall tab of Ativan and it's not yet 6 am - I am having no negative reactions to the change.

I will try a new angle and take you on a trip through the past week:

Thursday: Receive blood transfusion. It is easy. It takes about five hours. I eat a turkey sandwich in the middle of the treatment, then fall back asleep. Expect to feel fully refreshed the next day.

Friday/Saturday: Come dangerously close to having first Exorcist moment. Stop making sense when speaking. Sleep alot. Cry a lot. Feel sick, make self throw up most recent meal—prunes and peanut butter. Smoke lots of weed, yet for the first time it does not induce immediate hunger. Annie returns.

Sunday: Vomit chamomile tea in morning without provocation. Barb calls doctor. Am brought to see doctor. Doctor assesses the situation. He asks questions like "How much did you eat yesterday?" and I say "I ate one mile." He says, "What was your lowest weight?" and I say "220." He sends me to hospital, where I am admitted.

Monday: Continue speaking like possessed creature. Tell mother I can't possibly shower "with that hat in the toilet." (the pee-capturing hat.) It does make sense, just sounds ridiculous.
They have held me without food or water from midnight Monday morning 'til noon, so they can do a mini-operation in which they implant a something called a port-a-catheter in my chest above my heart. This a handy device through which all blood and other fluids—including chemo chemicals—can be given and extracted. Saves a lot of wear and tear on the old arm veins.
Still all fluids are withheld through noon on Monday and all I can do is babble about gatorade. It's all I'll talk about, to anyone who'll listen. Any member of the hospital staff, including the orderlies who wheel me from place to place, hear about my lust for Gatorade. One yellow, one orange, and one purple. As soon as I come back from under the anesthesia.

Tuesday: I am full of Gatorade. The port is locked and loaded in my chest. I'm acting half as batty as I did when I arrived. It turns out the reason for my lurch in behavior was a spike in my calcium level (of all things). Apparently, when your calcium levels go up 5 Mls per decibel (or whatever) it makes you crrrrraaazy. So they gave me some anti-calcium stuff and I become me again. Only this me is on steroids, and here's what that looks like:
I wake up Tuesday before dawn, looking for my cell phone so I can transfer my photos onto my computer and start a blog post. Unable to find cell phone, I ransack both Annie and my luggage, crawling around behind her bed on my hands and knees on the (not-so-clean) hospital floor. I fold and re-pack all of our clothes. I call my parents at 6:30 am asking have they seen the phone. They have not.
I "accidentally" wake up Annie, who tells me where to find the phone. I start a blog post. It goes unfinished, for reasons I can no longer remember. I spend the day in complete OCD mode, trying to re-organize everything in the room. But nobody wants me to bend or lift, as falling or bruising or breaking could apparently be tragic. Nobody wants me to do anything but sit in bed and direct traffic, which kills me.
Annie and I fight over things like whether or not I can get into my red bag and look for my own socks. I get up to pee and then lurch around tidying things, justifying myself by saying "well, I already had to get up to pee..."

Tuesday evening culminates in epic breakdown, witnessed by Dr. Dad. He has come with some bottled water which Night Nurse T. claims the hospital does not supply after 6 p.m. I have developed some issues with Night Nurse T. It's not that I think he's bad at his job, it's just that I don't entirely trust him to empty my pee hat or bring him the extra sheets I'll need when I sweat through the night, or remember what medicines I'm supposed to take at which time, or understand what the hell to do with me in general. The last time Night Nurse T. left my room, in fact, I had said to him, "Oh good, this means I won't have to see you again 'til midnight," after which I had felt terrible.
So Dr.Dad arrives in the middle of this scene and says, essentially, "Good God, you're hysterical, why don't you just page the nurse and ask for an Ativan?" And I sob and explain that I can't possibly face Night Nurse T. again, not after what I said to him and how I feel about him. And I cry and cry, and Dr. Dad goes and gets Night Nurse T., who comes back with an Ativan looking all hangdog and apologetic but still doesn't empty the pee hat or bring the extra sheets.

Wednesday: Am forced to draw from previous night's experience and tell oncologist about encounter with Night Nurse T. This is extra difficult as I'm extra self-aware that every time I speak, I seem to go on about three times as long as necessary. People keep turning to me and gently urging me to simplify. I think I am being simple.
So the simple issue is, I'm a control freak with some new anger management problems. I hate being stuck to a 10-foot radius surrounding my bed. I hate that if I break that 10-foot radius, something bloody will rip out of my chest or something expensive will rip out of the wall. I hate not being able to go outside. I hate not being able to leave 3 south. I hate having to ask Annie to get my socks out of my red bag. I hate having to ask people to do anything for me. I really, really, really hate the nurse-call button. I hate being at their mercy. I hate not knowing if they got the beep, and the annoyed sound in their voice when they do. I hate that the chemo-drip machine gets air in the line every 20 minutes and beeps incessantly until someone will fix it, and the only way to get someone to fix it is to press the nurse-call button.
I do like all the nurses, though, except Night Nurse T. And I love my parents. And Annie. But this is not the segment for that.
So the resolution to the epic breakdown is to get on a lower dose of steriods, and a regular schedule of Ativan, and have a very nice student nurse named Kelly hand-write me a copy of her color-coded notes which tell me exactly what medicines I need to take, what for, and at which times per day. This turns out to be all I really require.

Thursday: Continue to make way through 2nd liter of Orange-Slice-Colored chemo bag. (I'd say Orange Gatorade, but I love it too much). This is now something like day 2-or-3 of 4-day long chemo drip marathon. I don't especially try to keep track of the days. Oncologist has arrived at a plan where I finish this chemo, hang out a week or so at home—how I LONG for some Yard Time now!and then drive up to have a consultation with the Stanford People. This here cancer, it seems, might be more aggressive then they initially thought, and require some measures that Kaweah Delta District Hospital cannot provide, such as a Stem Cell Transplant.
I'm not yet informed enough to spread statistics about Stem Cell Transplant as a therapy for Acute Diffuse B-Cell Lymphoma, but I know they're considering it. I also know they use your OWN stem cells to grow healthier ones, or something, so no donations will be necessary.
Anyway, spent Thursday morning in good spirits which somewhere around 2pm gave way to poor spirits which involved me curling up in the fetal position and crying in Annie's lap, so she put some pants on me and took me out onto the Patio, the only place outdoors I'm allowed to go. The Patio is a pretty terrible place, but I won't describe it here because we fooled around and took some pictures, which Annie then got tipsy and edited into a video. Am hoping the video makes it to this blog very shortly.

Friday: Spent the entire day watching Inglorious Basterds in bed. Had many local visitors (parents + friends of parents) which made it possible to watch a 2.25 hour movie in 6 hours. Had no appetite. Slurped on Ginger Ale. Spent many hours regretting having put on Old Spice Deodorant—think I'll never want to smell it again. On the plus side, received Tremendously Terrific Care Packages from Tremendously Terrific Friends, which I could do nothing but sob over. Friends! Sob! I miss you!

Saturday: (This present moment!) 7:07 am: Dr. Fill-In Oncologist has just declared that this is to be my last bag of Orange Chemo Junk (I think there were four in total). That will be followed by a much smaller bag of Cytoxin (fun name, right?) which will empty itself into my veins and that by tomorrow...if all my blood work looks good...I can go HOME! But I can't bear to set myself up for disappointment. Who knows what the blood work will look like? How can I predict the capricious nature of my hemoglobin, calcium, white blood cells, LDH levels, and what the fuck else? I can not.
Also, I am bald now. Like, down to the nubbins, bald. It fell out as soon as I shaved it off. I look in the mirror and I see Gollum.


  1. What did I do .......hmmmm..... I don't remember Monday, or Tuesday, so nothing noteworthy it would seem. I am sure I cleaned the house, probably did laundry, and I practiced the Ukulele. Wednesday I worked with nineteen students from Kindergarten through sixth grade : Fun, different, tiring, satisfying. Thursday, Friday, and today I attended a Change Ringing Festival . I was the only one who had never done it before. Each day I was blessed with one on one coaching from one of the world's most accomplished Change Ringers, and got to hear my name pronounced in a fine English accent. Each day I have watched in awe concentration exceeding anything I have witnessed. The ringers 'day jobs' included a Bio-Chemist, Geneticist, Drs., Nurses, Musicians, Artists, Engineers, Teachers, and a pile of Phds across the spectrum. I stood outside the church and listened to the symmetry of a 45 minute quarter peal the precision of which was stunning. I was reminded again, what Cousin Erna said to me years back.."you never know". Every day Tisha and I confer, " Anything new on the blog?". Hurrah, today there was.

  2. Very good still look adorable balding. I'm glad you are feeling more yourself...I know that it's hard to ask for help but you're doing the people you love a favor by letting them express there love for you by helping you with the little comforting stuff. We know you're a strong woman but even strong women need help sometimes. Love and Hugs

  3. Dear, thank you for sharing your life, your struggles, your triumphs, and soon, a video of you and Annie - "fooling around"??? Can't wait. Love you both!

  4. Ah... you broke out of the glass cage and let yourself have a few good breakdowns. This is progress! And arrived home to Lupe's enchiladas...sounds yummy, assuming you are in the mood. I hiked Tumacoc Mtn? Hill? here in Tucson with the Hispanic vice-principal from my school, who I both like and admire and afterwards we went for a fabulous Mexican breakfast. So we have another wavelength we share... You really do need to come visit me in Tucson when you are done with this "other" stuff. Annie too. A lovely warm place, though at night, in the winter, the desert can cool in an instant. GREAT lightening in the summer "monsoon" period too. Life will expand again for you. Strange, but I don't just believe, I know. So hang in there on this strange ride. This will become the distant past. Love and Hugs, Auntie C.... Granny to Jack and Jill :)

  5. Kia, I just found your blog today and I am in total shock. It just doesn't seem possible that something like this could happen to someone like you. It just doesn't.

    You have been so strong and I am so happy that you have chosen to share your experience through your beautiful writing. You have been in my thoughts all day and will continue to be.

    I wish I could find Boo and drive her all the way up there to visit.

  6. Love, love, love the fall risk bracelet. I had one of my own not long ago. Mary even stole the warning star they put above my door (it is now above the bedroom door at home). Happy that you feel like doing things for yourself, and even happier that you have people who love you around to help with the things you can't quite manage.

  7. Fuck you cancer. Now I am in a glass case of emotion.


  8. A very good sum up of the week. I need to here that little Kia voice soon.

  9. I don't know you in real life, stumbled upon your blog weeks ago, have followed along. Have found myself wondering how you are and hoping you are okay. Much peace, strength and love to you and yours. And even though this all sucks, you are beautiful with and without hair!

  10. goodness gracious, i love you.

  11. Oh, sweet Kia. What a week. I'm sorry to read that it has sucked at times, and am comforted to read into it your continuing humor and faith. And I have to confess, happy to see that you're allowing yourself some pissed off time and breakdown time. This situation sucks. And your approach to it and the way you have surrounded yourself with loving support will get you through it. Thank you for sharing it with us. Lots of light and good healing energy is being bounced right back to you.

  12. Hi Kia Jun, it is so hard to put up with every thing you are experiencing I'm sure. I wish I could make a ball of all the stuff you are going through like rolling a ball from yarn made of all the bad times you are experiencing with the Night Nurse T right in the middle of the ball and then throw the ball in the sea.
    That time will come. You are half way through.
    By the way there is an elective course for nurses where all they hear from their professor the entire term are insults and nasty remarks. The course is called "Fuck You Shit Head" for 3 credits. You may want to ask him if he took that course.
    You had a beautiful head of hair. We dreaded this stage: Baldness. Now you're bald. It happened and now it's done. The next thing in a little while will be hair coming back first like fuzz like spring chicks and'll have your hear back just like before...I've seen that happen. It is wonderful. When it happened to you the first time you were too little to remember. This time you'll not forget.
    IT'S REALLY IMPORTANT TO EXPRESS ALL THAT IS BUBBLING INSIDE YOU. (Besides it's the best time to express them. Because when this is all over other's may not be so forgiving as they are now.) I LOVE YOU VERY MUCH. My love to Annie.
    Old Spice?!!!! Good God. Don't do that. Please no Old Spice.

  13. ) I LOVE YOU VERY MUCH. My love to Annie. amazing