Haircuts and Birthdays

Happy Birthday Mom! Off to help celebrate at her house in a bit with far away aunts, uncles, and cousins. I'm feeling fairly good from chemo still. The new nausea drug seems to be working although we'll see if it holds out for the weekend. My insurance company has decided that I only needed three pills although my doc had written the script for eight. If I'm feeling really poorly I can go pick up the other pills at full cost and pay for reimburse but right now I'm hanging in.... just tired.... so tired. I added a quick pic of my new do to the right and there's a little photo montage on the beeboo site as I wasn't sure how to add larger images here. Check it out on the journal page at http://www.beeboo.com/journal.htm a fun night was had by all! Thanks for visiting. Beth

2 Down 6 to Go

Just back from chemo session #2. This one went well but a bit slow. We arrived at 9 AM, port accessed, blood taken, saw Dr. and discussed problems with previous weekend post chemo #1 and insomnia of last week. She gave me new scripts for sleep aid and third anti-nausea meds so I'm crossing fingers that my weekend will be better this time. We were in the chemo cubby by 10 AM and didn't start treatment until just after Noon due to a glitch mixing my cocktail at the Pharmacy (so said by the nurse.) I was planning on going in to work and hitching a ride home with Andy but when we didn't leave the hospital until close to 1:30 PM it just didn't make sense. Tomorrow I'm planning on driving myself in to work in the AM and to my Neulasta shot at 1 PM. I'm crossing fingers that I'll be able to have an almost normal work week next week.

Christmas was nice but hectic and exhausting. My energy level is just so damn low. The kids did more around the house and James kicked it up a notch. We had the Mellor family over for Christmas Eve and went to my Mom's for Christmas Day then a quick visit at a Mellor house on the way home. I thought I would sleep like a rock that night but no. Yesterday (Dec 26th) my sister Lisa and niece Kira arrived on a red eye from Seattle. Kira didn't seem affected and Lisa held it together. I took a long nap.

Last night the kids, James and I had a hair removal party. Sander cut James' hair first with scissors, mullet, monk's ring, then I buzzed it off. Phoebe cut my hair, short Cleopatra bangs, short all over, then James buzzed it off. We have photos. I'll post something soon either here or on Beeboo. James actually thinks I look good buzzed. And I have to admit if feels pretty good and nice not to have to deal with all that thick hair. I tried on all the hats from Christmas which seem HUGE and am happiest right now in a little cashmere skull cap that Mom had bought me or nothing at all. At the hospital I was hatless and quite comfortable. At work as long as I'm warm I think I'll do the same. The wig may be set aside for now. At night I flipped back and forth between nothing and the hat, hot... then cold... then hot again. Without the hat my hair stuck to the pillow case like velcro. But, soon that won't be an issue as eventually we'll need to shave.

Quick note about the Reiki. It was really quite nice. Mom's massage therapist is wonderful, very calm and kind. She spent well over an hour with me and by the end I was feeling very soothed and relaxed. Within an hour of getting back to my house I was tense and achy again. I think I need to live on the heated massage/Reiki table for the next 4 months and all will be well.

Thanks for your patience in watching for this update and sorry for the delay. Life got in the way. Hope your Christmas was happy too! Beth

Reiki

Mom is taking me for Reiki this morning with her massage therapist. I'm interested to see if it will help with continuing discomfort from chest tubes and thoradectomy surgery. I'll let you know how it goes. I have the nausea pretty much under control now so looks to be one week bad, one week good for each chemo treatment. Still tiny moments of discomfort but not bad. Hopefully I'll be able to drink more water next time and "dilute" the side effects. My next treatment is Dec 27th. I've decided to zip off the hair on Dec 26th. I'm thinking of gifting the kids some hair scissors for Christmas and letting them experiment with cuts before we buzz. How often in life would you have free reign to play with hair cuts on your Mom?

Sleep has been questionable. I don't know if it's caused by anti-nausea drugs, food choices, or just too much to think about. Last night I fell asleep after 11 PM and woke at 5 AM for no reason. The night before was worse. Lot's of laying about. Wish I could have one good long deep nights sleep. Ah well, maybe Santa will bring me sweet dreams for Christmas.

Back with a Reiki update later in the day. Beth

Better and Better

By yesterday midday I was feeling under control. I could speak to people with emotions under control and nausea was fairly light. I have been eating baby meals and lots of saltines and ginger ale. I actually sipped on a little egg nog last night watching the kids hang the ornaments on the tree. Today I woke and decided I'd give work a shot. James drove me in around 10 AM and I'll hitch a ride home with Andy around 2:30 PM. I just took a nice mix of meds that has me comfortable so feel like I should be able to maintain for the afternoon.

Phoebe turns 13 today (yikes) so we have a few family coming over for dinner. I've left it up to everyone else to pull it together and feel like it'll be this way through the holidays and beyond.

For future planning I'm envisioning chemo treatment on Thurs, feeling ok. Neulasta shot of Fri, still ok til late afternoon/early evening when queaziness starts. Sat and Sun I'll be non-functioning.... heavy nausea... overtired.... crying if you make eye contact with me or try to talk on phone. Mon AM still not fab but better. Decent by midday Monday. So. What I'd like is a new drug to add to my mix that'll sedate me from Fri evening til mid day Monday. Just tuck me away in a bed with some depends and ice chips. I'll be good to go.

And, Cousin Rob, I skipped ahead after your comment to the chemo chapter. I have nothing to whine about. Man, I don't know how Lance survived his treatment. Much stronger person than I. My treatment is no where near as intense and it definately puts it all in perspective. Love to you and thanks for the book! xox Beth

Bad Weekend

No luck with no side effects. I have felt horrible all weekend through today, Monday. Worse nausea than when I was pregnant combined with crying jags and continuing ache/pain from chest tube spots. Ugh. I'm going to keep this entry short and go sip some ginger tea with honey. I've been trying to eat tiny light meals, but mostly living on ginger ale and saltines. The couch is my new home and sleep at night is difficult. I'm hoping things will get better today to give me a week or so before the next treatment. I can't imagine if I stayed this way throughout.... waaaa...

Chemo #1 down, 7 to go...

Back from 1st chemo treatment. All went well. James kept me company. He gets the heebie-jeebie's in doctors offices and hospitals but I think I'm breaking him of this phobia. We all knew there had to be a greater purpose to my diagnosis, treatment, surgery, complications, etc. This must be it. By Summertime James will be completely comfortable in any medical situation.

I met with the onc NP and didn't have many questions as I'm so read up on things. Blood work all looked good. I took the first of the 3 day Emend tabs, was given IV anti-nausea meds, and have others to take as needed as well as with day 2 and 3 Emend's. Still amazing to me that one prescription totalling 3 pills cost over $300. $100 per pill seems pretty pricing but the onc nurse was saying that it's all worth it. She said since Emend came on the market they really don't have issue with nausea being such a huge side effect.

They injected the first drug through IV in the portacath, two huge doses of red liquid. I get to pee red and orange for the next day or so (may be too much info for some, sorry.) The second drug was a slow drip over half an hour by IV. This one gave me sinus pressure which the onc nurse said happens with 50% of patients. I've decided this is the one and only side effect I'll have during chemo treatment.

We stopped by the pharmacy on the way home and picked up the other 2 Emend tabs, some special toothpaste, mouth rinse, and soft toothbrushes as mouth issues are another side effect of chemo. After pharmacy we drove home. Kids had an early day off from school with snow starting midday. I made up a double batch of Lipton Extra Noodle Soup for lunch and split it between the 3 of us (James wasn't interested.) I was hungry and ate it quickly. It seems to be sitting well. What I really want is a steak... ah well, we'll see how the belly reacts to broth first.

Tis the Season

I had a good appointment with the thoracic surgeon yesterday (sister Sue came along for company.) He's happy with my progress, happy with the chest x-rays, and doesn't expect to see me again. I did ask for one refill of the 4 hr oxy's just in case I can't wean myself off by the time the first set (5 pills left...) are gone. I'm taking the last of the 12 hr tabs at night then will switch to 4 hrs at night. Will only take during the day as needed. And, am going to test out a schedule of ibuprophin & tylenol that the NP is recommending. Both thoracic surgeon and NP would like to see me get off the narcotics as quickly as possible. I was happy to hear from the med onc that they don't conflict with the chemo treatment so if I need to use them for a bit I can.

Did some Christmas shopping with Sue, to work for a bit, then met sister Linda for a bit more shopping. Linda and Sue did a quick exchange with me and Linda drove me home with one "quick" errand on the way.

James had dropped off the prescriptions that I needed filled for the first chemo treatment (9 AM this AM!) yesterday morning at the pharmacy. They were supposed to be ready yesterday afternoon by 2 PM. I went to pick them up early last night and at first they weren't ready then one was missing. It was the anti-nausea med. I told them I absolutely had to have that one. I can't even imagine the pain of throwing up with my chest and ribs still hurting. Nausea I can deal with. They had a hold on it until the med onc who'd prescribed it contacted my health ins company. And they couldn't reach either. Ugh. I was ready to pay for the pills out of pocket but they said it was over $300 and weren't ready to charge me. When they couldn't resolve by phone and I was standing at the counted saying I need this for 1st chemo at 9 AM tomorrow (today) the pharmacist made the decision to give me the first pill in series and told me have the med onc call today and we'd resolve the issue then I'll swing by after chemo to pick up rest of pills. I believe he said it's a set of 3 pills and they gave me the $100 day 1 without taking any payment. Tis the season for acts of kindness even if you're a pharmacist working for a large corporation! I'll pay it forward.

Today chemo and if I'm feeling up to it I'll post and let you know how it goes. Tomorrow I have an appointment at a wig shop. James and the kids want red or blond. I told them I might live dangerously and get brown with gray highlights... short either way I think. I'd like to keep it simple and light weight. I'm hoping my pals Loan and Themia might be able to come and assist. Who knows what I'd pick on my own! See you in a bit. Beth

Weekend Update

Sorry for the huge lapse in posts, only 4 days but seems like forever. I had a nice weekend with the kids and James. They went out yesterday and got a Christmas tree. Still on the front porch but it's a bit closer to the living room. I did some shopping with Mom on Saturday at the Mall and yesterday with the kids at the Heiffer Project. I feel the need to get things purchased before my Thursday appointment for first Chemo session. I'll need to go out again this week as I'm not quite done. Online purchases are also a possibility and may be a necessity for the kids big gifts. I've been at a loss so have asked them directly what they want and they're still thinking.... so Amazon may be part of the equation.

I'm still taking pain meds at night but have tried to stop them during the day. I'm quite uncomfortable but not in serious pain. I don't know how to describe it. I still take the pain meds at night as I'm much more comfortable sleeping. I'll see the thoracic surgeon for a check-up on Wed and hope to be able to verbalize my discomfort. Maybe there's some drug out there that would make me more comfortable than the pain meds. Who knows. One of the reasons I'm trying to stop using the drugs is that I can drive myself around. I'm actually going to give work a shot today on my own. It's icy out, kids have a 2 hour delay and James is sanding the driveway. Our road is horrible still but James says the rest of Princeton seems fine. I'll get to work and see how long I last. Andy, if you're reading this I'm on my way!

Lazy Day

I worked yesterday for almost 3 hours. Managed to get the alumni newsletter formatted. This was after an early AM dentist appointment. Mom chauffered me to the dentist, then work, then pick-up and home again. Thanks Mom!! I was exhausted when I got home around 1:30 and slept until the kids came home from school.

Last night I woke up twice in quite a bit of pain and discomfort. I took the 4 hr oxycodone both times and fell back asleep. This morning when I woke I was still feeling very overtired, uncomfortable, pain on left side ribs right under breast. It has to be the chest tube spot where they'd moved things aside. I don't know why it hurts more some days/nights than others. And, why the long acting meds weren't doing their job last night. I made the decision to stay home today. Did a little work on the laptop. Took a nap. Took some meds. I'm feeling a little better but still wiped. I'm wondering now if it has anything to do with the flu shot and pneumonia vaccination I got at the clinic on Monday.

I finally wrote my letter of complaint about my surgical nightmare to the Patient Care Services department at the hospital. I've been meaning to do it for the past month but kept putting it off. Finally sat down and two hours later popped it in the mail. I've said all along that I realize mistakes can be made (we're supposed to call it a "complication" not a mistake.) But, I feel like some bad decisions were also made throughout my first "complication" and hospitalization and they need to be addressed. So my letter's in the mail, James had sent his and we'll see where this takes us.

Sander and Phoebe had a half day of school today. They're cleaning rooms... moving toys out of living room upstairs to free up wood stove. Maybe a wood fire tonight!

Work tomorrow. A friend, Sue, is going to pick up and deliver me to Tufts then return me back home again. I would say that I'm getting spoiled but it'll also be nice to hop in my car on the spur of the moment and run an errand or two. Hopefully by the end of next week I'll be off the pain meds but if next week is anything like last night I could also be calling for refills.

Mini Update

Back home from work. James got me in to the office for 10 AM, I worked until 12:30 PM then Andy gave me a ride home. It was fine at work. Just when I started getting a little uncomfortable it was time to go. Felt like a toddler on the ride home as my eyes kept wanting to close. I'm going to nap for a bit now then when the kids get home help Phoebe with her cell project. Tomorrow brings an early morning dentist appointment. I alsmost cancelled but can't do any dental work once chemo starts so may as well get it over with. From there I'll go to work and see how long I last. Beth

Back to Work

Yesterday went well. I actually went in to the hospital for a Dr's appointment and left on the same day. I have to admit I was a little paranoid walking in to the building. Amazing not to be admitted.

Dr. Navid thinks all is going well. She checked out all the incision spots, etc. and all look good. She reviewed all the medical records and test results. Had me do more bloodwork to double check white cell count and crit. I got a flu shot and pneumonia vaccination. I'll see her again in one month to check progress. She asked me how much time I was planning on taking off from work.... I said, actually, I'm on my way in to the office after this appointment. I've been out of office for way too long. Even if I only work for an hour or two a day it'll be an improvement. I'm also setting up a spot at home to work out of the house as needed.

Mom drove me from Dr's to work. We walked in to the office and found two massive baskets of food from Trader Joe's plus a few bags. Amazing! Andy had started the gift and many other people donated as well. James was most excited by the coffee (we've been out for a week) and Captain Crunch (not from Trader Joe's I think!) The kids were thrilled with chocolate advent calendars and the make your own ginger bread house kit. I love the teas amongst everything else and had a bowl of kashi for breakfast, yum. Work had also included in the get well gift a gift card for trader joe's in case I ever run out of food, and a gift card for barnes and noble bookstore. Thank you so much! What an amazing surprise. Andy packed it all into Mom's car and James put it all away when he came home. After such a busy day I ended up bonding with the couch yet again from 3 PM til bedtime... what a slug.

Today James is giving me a ride in to work for a couple hours, then back home to help Phoebe make an edible 3-D cell. Thanks for checking in, I'm doing well. Hope you have a good day too! Beth

Cross Fingers Back to Work

I've had a nice weekend although still messing about with pain issues from the surgeries. Yesterday I stayed the entire day at the church fair with sister Sue. It was nice, I spent most of the time in a chair behind the table, visited with people who'd heard about my ordeal and could be normal with people who hadn't heard. With jewelry sales of the day I'm happy to say that Santa will be able to visit our house again this year. Thanks to Sue for working the day for me!

Today, I've been pretty close to couch. I think my body & mind were tired from being out and about yesterday. Phoebe had some friends pop by to help with chores then off to hang out with them up the street and work on homework. Sander helped his dad with firewood this AM then stacked midday here at home to beat the tonight's snowstorm. This afternoon I rewarded him with a friend over our house.

Tomorrow I have an 11 AM appointment with my primary care physician. I'm hoping to get feedback on my recovery and how my wounds are healing. In the back of my mind I dread that she's going to find something to admit me to hospital... if I manage to make it out of the clinic I plan on going in to work for a couple hours. Mom's going to drive me to the Dr. then to work. My coworker Andy is going to give me a ride home. I feel like if I get through the day tomorrow I'll be getting a bit of my life back. Bizarre to have been out of work for an entire month. I don't think I've been away from work for that long since high school.

Wish me luck....