Broken-brained
I've got another doctor's appointment tomorrow. Its been a week but I feel like I haven't been in a month.
I still have to find a physical therapist. I don't know how I'm going to do it. I guess I start calling around? Dana Farber suggested I call my insurance company, but I imagine them being unhelpful.
It was suggested to me today that I look into getting an occupational therapist. Basically, this is the person you'd turn to if you had a head injury. I know I'm not dealing with actual brain damage, but I'm not operating correctly either. I had to count out 7 plus 5 on my hand the other day because it's not "THERE" in my brain catalog anymore. I'm kind of anxious about it too. I'm thinking maybe I should go to the store and buy books of brain teasers. Or those workbooks for six-year olds learning math.
For the record, I know NOW that 7 plus 5 is 12. Phew.
The costly shot
I had a doctor's appointment wednesday, and we started to talk about the end of things. Getting the CT scan, having the day surgery to take the port-a-cath out of my chest... things I never thought we'd discuss (as in, this time seemed so far away).
And since my blood went to crap last month they pre-emptively gave me a shot for my white blood cells. This shot was more of a one-time booster than the every day shot I had to get last time. But as the nurse was giving me the shot, she told me about a patient who was going on a cruise and needed to get the shot on-board. Insurance refused to pay for it since the cruise ship wasn't a hospital setting, and the man had to pay for the shot out-of-pocket.
Just guess how much it cost. Go ahead, guess.
Three thousand, three hundred dollars.
Can you believe it?! One stupid shot. I can't even imagine how much my insurance company has spent on me this past year. I know my one-week hospital stay back in August was $26k. I can't imagine the other bills I've racked up. Thank GOD for insurance!
The Last Day
I had my last, last, very last day of chemotherapy today!
The nurse gave me a cake and a bottle of sparkling grape juice to celebrate. My mom suggested going to my favorite tea room on the cape, and I had just enough energy to do it. It was so nice to be among normal people, just out for a nice lunch.
I'm feeling okay now, waiting for the chemo's effects to start kicking in this week (it seems to be cumulative). My blood was so bad they actually lowered the amount of chemo I've received this past week compared to earlier times. So hopefully I won't be as sick.
I have my CT Scan scheduled for March 15. I'll be going in each week for my regular doctor's appointments, but that scan is a big one... it will cross-my-fingers show that the cancer is GONE. Now I'm under the impression the cancer was removed during surgery in August. I think if cancer shows up on the scan I'll fall into the fetal position on the floor. But I'll cross that bridge when I get to it. For now...
HAPPY LAST CHEMO DAY! YIPEE!!!! :)
What it's like
My brother's best friend (also named Jeff) and his fiancee sent me a beautiful vase with flowers. You know how I love to share the pictures with everyone!
So tomorrow starts my final cycle of chemotherapy. I've felt crappy today so I'll probably get some fluids along with everything else. Its been awhile since I described what its like to get chemo, so here we go...
First I head to the infusion floor's check-in desk. I hand over my blue card which has my name, birthday, Dana Farber number and Brigham & Women's number on it. The desk makes a hospital wrist band using my card (always making me confirm my birth date), and if my nurse is ready for me I'm handed a yellow piece of paper and told I "can go back now." Otherwise I sit and wait for them to call me. They only call first names, supposedly for privacy. I'm used to there being 800 other Jennifers whereever I go, but not-so-oddly I've only once had an issue with there being two of us waiting. I'm almost always the youngest person in the waiting area.
So off to my nurse I go, winding through nurses stations to the back area where I hand over the yellow sheet of paper to a medical assistant. This is usually Jerry. Jerry weighs me, takes my blood pressure, temperature and pulse, checks my wrist band and asks if I'm in any pain. He then points me to a lovely blue recliner where I wait for my nurse.
Sometimes you have to wait a loooong time for your nurse. Sometimes she's ready. If I'm having blood drawn first, like I will tomorrow, she's usually ready with the needle and tubing. She feels around on my chest for the exact location of the port (located just under the skin near my shoulder) sprays it with cold spray to numb the skin, and pushes the needle in. It usually doesn't hurt at all.
After the blood draw I go upstairs to my doctors offices. I check in showing my wrist band and this time I'm given some green paperwork. I walk across the hall with my paperwork and put it in a waiting basket. Eventually I'll be called for vital signs (if I haven't already had them taken) and I'll be shown to a room to wait for my doctor. Sometimes this takes 15 minutes, sometimes its 2 hours. Doctors and nurses don't keep appointments like they do at a general care office. They'll sit and talk to you all day long if you need it. It throws off the schedule, but when its your turn, you don't feel like you have their attention for only five seconds.
The doctor will chat with me, he'll look over my bloodwork and do a mini exam. I have to be honest now, and say what has hurt over the past week or how bad I've felt or how often I've been to the bathroom. Dignity: out the window.
After the doctor's appointment it's back to the influsion floor where I check back in showing my wrist band and hope my nurse is ready for me. No yellow paper this time. Once I'm in the chair my nurse usually comes over to chat with me, and I tell her the same things I told the doctor (mom fills in the blanks). She pages the doctor if I need extra meds or fluids or whatever. After awhile she comes back with bags of clear fluids, some with drugs, some with just water and sodium. Tomorrow, I'll get Zofran (fantastic for nausea) by drip, saline by drip, and eventually, the chemo itself. The nurse checks my wrist band and makes sure my Dana Farber number matches the bags and sirynges sent up from the pharmacy.
And then I just sit there and wait for it all to pump into me and be overwith. Sometimes I get a heated blanket and drift off to sleep. Sometimes I watch TV. Sometimes I'm amazing and can do cross-stitch or read. Usually I stare out the window. When I look around at other people, I see they're all doing it too.
Sometimes the appointment is for 1/2 hour or so, but its usually an hour or two. Some people have to be there all day. Most people look like me-- you wouldn't know they were sick except that they're in the chair. We look tired most of the time, my cancer friends and I, but not really sick. We do well blending in to society. :)
WBC up
My white blood cell count went from 300 to over 7000 this week. I can leave the house without wearing a mask! I had blood work done today which showed that the shots really did their job.
I'm feeling okay, mostly just really tired. I'm getting ready for my last chemotherapy cycle (crossed fingers) starting on wednesday, which like the previous ones will last for 5 days.
Then they'll start the shots again so my blood counts don't get as low as they did this time. Have I mentioned lately how much I hate getting a shot?
Lousy Blood
I found out at today's doctor appointment that I have about six white blood cells. They gave me a shot to increase my red blood cells and now I have to get a daily shot to increase my white blood cells. Even better, I now have to wear a mask in public places. I can't describe it, but I feel like I stick out when I'm surrounded by other cancer patients. I know they're all thinking: "I bet she's sick, I don't want to catch what she has!"
I don't know the unit of measurement, but my WBC is supposed to be between 4.2 and 10 and I'm at 0.3. Yeah! The nurse even joked with me that I had *no* WBCs. It would explain the wicked cold I had over the weekend. My eyes wouldn't stop running and my nose was a faucet. I must have gone through 2 boxes of tissues. But I'm feeling better, somehow. I'm not sure how my body fought it off, but it did! :)
So I have to go into Dana Farber daily the rest of this week, just to get the shot (because I'm a wimp and I can't give it to myself). They'll test my blood again on friday. But other than those appointments, I'm in lockdown at the house again.
Eat up!
I had a doctor's appointment yesterday and found my blood levels, white and red, fell again. AARRGHGH. I'm in danger of delaying my next chemo (in 2 wks). And though I felt okay I was over-ruled and had to get more fluids. It only takes 2 hours but when you can't read it sometimes feels like an eternity.
And my nutritionist tracked me down. She's extremely nice and very intelligent but she really leaned on me this week. I have a list of things I have to eat, and she told me my way "wasn't cutting it anymore" and the new way is "non-negotiable." She even wrote it in big capital letters at the bottom of my menu thing. So I actually have to eat MORE OFTEN than I do now. I eat twice, sometimes three times a day, and it has to be five or six times a day now.
She said the reason everything tastes bad is not just mouth sores, but because my protein levels are so low. I have to actually "eat beyond the barrier".
I used to love food. I've taken classes (I'm on hiatus now, obviously) in culinary arts at a university known for churning out chefs (Emeril, anyone?). I used to love the color of food and the potential of food to be something great. Now I have someone, a professional at that, telling me I don't know how to feed myself. And even better, I'm not eating enough.
My nutritionist was telling me all this as I was having fluids pumped into me, which shows I also don't know how to drink enough. I'm failing at two of the most basic human instincts.
And I'm only supposed to eat proteins. She said not to bother with fruits & vegetables. Are you having a smoothie? Put some peanut butter in it. Is that yogurt? Put some peanut butter in it. What is that, steak? Put some peanut butter on it. Are you eating tuna? ALL RIGHT I GET IT!
