My Long Day of Chemo

Arrived at the Cancer (free) Center at 10 am and returned home at 3:10. LONG day. Met more nice ladies. Seems as though everyone I meet is being chemo'd for breast cancer. Almost everyone is bald and is nearing the end of their treatment session.

I still have 12 chemo sessions left stretched over the next 4 or 5 months. Another almost 5 weeks of radiation. I am starting to develop esophagitis (sp?) which means that my esophagus is becoming a bit inflamed or something so it's hard to swallow; or after you swallow, the need for a long stick to poke everything down into the stomach might seem a handy thing to have. This is why many people who have radiation near that area lose weight - they go on a liquid diet (and NOT a liquor diet!!)Although if I could go on a liquor diet, I bet I would be really funny and have a bit more energy; of course I would - I'd be picking myself up from the floor, rolling down hills, falling up steps. Ohhhh, what an image that makes.



The above is a picture (2 years old - sorry I swapped out my harddrive which is now a SLAVE and haven't copied all my photos, music, and data to my new drive)portrays my kids, along with me and my sister-in-law Tessa.

My kids have been my salvation.

When I learned I had cancer on Weds., Dec. 2, 2009, I didn't call my kids until the next day. I needed a bit of time to understand that these things were being said about me. It wasn't anywhere near the end of the world as when I received the news of my husband's malignant melanoma, but it was rather nightmarish. I didn't cry, I really couldn't even think straight enough to ask any pertinent questions. Just kind of shook the doctor's hand as I told him "thank you" for letting me know. Larry was with me and he picked up the reins for the rest of that visit and called his doctor friend who called his doctor friend and got me in to a thoracic surgeon the next Monday and surgery the next Friday (12/11). I just sat back and let Larry row that boat - dead weight; yup, that was me. Semi-conscious dead weight with a quirky little smile on my face. I couldn't hear anything anybody said and just wanted to come home and sleep.

I called my adult children on Thursday; I don't remember the order, not that it matters. But Katie (my organizer - or Simon of my chipmunks) got things organized: who was going to come and stay with Aisling and Scout while I was in the hospital.
Who would help me until I felt good enough to go grocery shopping and walking around (shortness of breath and the pain was pretty awful for the first few weeks.)

Thank you Kate for being with me during my meeting with the thoracic surgeon and to hear the diagnosis go from 1a to 2b. Thank you for taking notes because honestly, I didn't remember much of what the doctor actually said. I was on autopilot.

Lauren and Larry were waiting for me after surgery. My wonderfully beautiful sister Kaydee wanted to stay with me in the hospital and be my guardian angel. Allison, my oldest daughter who will deliver my granddaughter in March, came and stayed from 12/13 until 12/22. Then Kate and Pat, and Lauren and Jonny came home on the 23rd for Christmas. That was one of the perks of being diagnosed. The kids really weren't coming home this year for Christmas - Terry and Allison McFarlan weren't able to make it because they both worked the next day (they live in Lake Geneva, WI via Scottsdale, AZ). Kate and Pat McFarlan weren't going to be able to come due to other commitments, but made it after all (they live in Chicago, IL via Scottsdale, AZ) and my little brown boy, Jonny Kokott decided to put me on his priority list and came home with Lauren Kokott (Milwaukee and Chicago respectively) but unfortunately they left the 26th early as Lauren had to be back at work.

I have to add (smile) that my daughters Allison and Kathleen met two Tempe brothers when they were attending ASU and both my girls realized what wonderful men Terry and Pat are...and now they're my sons-in-law. How lucky can a woman get? Not much luckier than that.

I had convinced Terry to come "home" (to West Des Moines) in Sept. and October to help me finish painting the exterior of my house. I had gotten the 1st floor painted, and the overhang and gutters but was afraid to venture too high on the ladder. While I wasn't running a marathon pre-diagnosis, I was very busy trying to paint before the weather got too cold.

The above paragraphs do nothing to convey the wonder and nurturing of hope I felt when Larry, Kate, Pat, Allie, Terry, Jonny, Lauren, Kaydee, Aisling, my big sister Anne Marie (Princess of Everything), my brothers John and Pat...my friends Beth and Marie gave me encouragement from afar as well as some of my own back at me to make me laugh.

I'm sure I'll have to edit this because it isn't written well because it doesn't convey articulately how much these people impacted my well-being.

I'll relook at this in the morning.

January 22, 2010
12:43 a.m.

Double Dip Chemo Cocktail

Good morning! It's been very gray here in the Des Moines area for the past few weeks. Ice, snow, white-outs, cancelled school days for Lingle (not that she's crying about that).

I have my "long" day at the Cancer Center today; Cisplatin as well as VP-16 (Etoposide) IV drips. I'm pretty sure I'll be getting a 20-minute dose of anti-nausea drug also - for a grand total of about 4 1/2 hours! Lucky me.

I don't care how old a child is; the yearning for a parent's unconditional love never ends. When I was diagnosed (last month, seems an eternity ago, seems like yesterday), I cried for my mom, my husband, someone to hold me and tell me that "everything will be all right". My significant other (yes, Larry, that would be you) is wonderful, has been a tremendous support, but I don't sleep with him at night (we each have children, are Catholic, and want to be good role models for our children). In the darkest part of the night (early morning?) when I waken, I desperately need to reach over and feel the presence of someone who loves me. I miss that. I want that. To feel a part of something bigger than me, to not be ALONE in the dark. Yes, God is there; but at times it's hard to feel Him, have faith that He is really there and that he cares. Wow! Where did that come from? I'm sitting here crying; for the people I've loved who are gone. My mom died in '72 at 39 y/o from Hodgkin's Disease , my husband in '98 at 44 years of age from metastatic malignant melanoma.

I was able to drink 7-Up, but now even that smells. Water smells bad, and has the most horrible taste. Pepsi is my drink of choice this week and, of course, I'm out.

I want to say, before signing off, that my incision has healed beyond belief. The left side of my body - under my arm, my left breast, left shoulder - is still very numb. I've read that some folks don't regain sensitivity in those areas. It feels really weird when I try to shave that armpit. I have to watch because I can't feel it. I'm almost off the pain pills (they didn't work for anything but constipating me anyway)...and only take one or two at night when the tightness under my left breast feels more like someone sawing through my torso. A bit better every day and then (magically) "one day, she arose to feel no more pain". "There's always tomorrow for dreams to come true."

Later in the day, or tomorrow, I promise I will talk about the supportive, wonderful people in my life: Beth, Marie, Larry, Wells Fargo, Allie, Kate, Lauren, Jonny (aka Onny), Aisling, my wonderful brothers and sisters (Johnny, I'll have a whole post about you)...and not necessarily in that order.

Here's a picture of my incision as of 1/20/10:

January 22, 2010
5:38 a.m.

Where Does the Money Go?

Insurance Premium from 1/10 to 7/10: 1167.90 Wellmark Blue Cross/Blue Shield
My Portion is the $ amount in ( ) at the end:
10/19/2009 Co-pay for visit/x-ray: 30 Iowa Clinic
10/20/2009 Co-pay for CT Scan 30 Iowa Clinic
CT Scan full charge 730 (512.00)
10/22/2009 CT Scan/diagnosis? 582 Iowa Clinic (496.00)
11/17/2009 Consult w/Pulmonologist 120 CIC (100.00)
11/17/2009 More charges??? for CIC 402 CIC (62.50)
11/19/2009 Follow up w/Pulmonologist 95 CIC ( 95.00)
11/30/2009 Lung Needle Biopsy 5881.42 Mercy Med (892.20)
11/30/2009 Pathology Report for Biopsy 842.00 Path Assoc. (175.60)
12/04/2009 PET scan 4211 PET Co LLC (2097.00)
12/07/2009 Consult w/surgeon 162 Iowa Clinic (50.00)
12/11/2009 Iowa Radiology 29 Prof. Component? (6.20)
12/12/2009 IA Radiology 36 Prof. Component (7.80)

12/11/2009 Anesthesiologist 3120 For Surgery (0)
12/11/2009 Surgery 3020 Surgeon (0)
12/18/2009 Visit from Chemo Doc 141 Dr. Morton (0)
12/17/2009 " " " 97 " " (0)
12/16/2009 " " " 141 " " (0)
12/15/2009 " " " 141 " " (0)
12/15/2009 Visit from Radiation Doc 447 Dr. T (113.60)
12/11-12/18/2009 Hospital Stay 45,988 Misc. Hosp. (440.70)

12/16/2009 IA Radiology 516 Prof. Component (83.60)

So far, my bills total about $5200 for my portion. Thank Heaven for insurance. When I got this insurance, I just wanted to make sure that my yearly physical was paid for. Shoot! I never in a million years thought I would ever USE it for anything more than well care.

My thought: there is something wrong with insurance vs. self-pay. If you have insurance, you get all these discounts; for instance, the hospital charged $45,988 but there was a network savings because of insurance of $27,309 so the health plan only had to pay $18,239. But, if I had NOT had insurance, I would have had to pay the full $45,988. That is why I say: Thank Heaven for insurance! Even with a $2500 deductible as well as $2300 yearly premium....

I do believe the above may be all the bills I receive. I may have some follow up from the surgery, and of course, I will get hospital charges for the chemo and radiation once that is finished. I have no idea how much 6 months of radiation and chemo will cost. I know that since it is a "new year", I will have to meet the $2500 deductible again.

Have a wonderful day.

1/21/2010
5:09 a.m.

You have to be alive to enjoy eyebrows, eyelashes, and hair of any kind.

I've developed "needle-phobia". On the way to chemo this morning, I started crying just thinking about the IV poke, and again once the nurse inserted the IV. You know what? It really didn't hurt. I have been going to the acupuncturist and now can't even make my next appointment because even Bill's little needles hurt. Please remember, I've never been sick and have no relationship with needles; not even sewing on a button needle!

I'll have to post some photos of Lauren's car. Jonny and Emily were here for a few days and were parked in the garage so poor Laur's car was iced over (glaciated?...is that a word?) in the driveway. Cryogenics. Had a text message from Jonny. He and Emily are driving back to Milwaukee as I type this. He's going under the speed limit and said there are a lot of cars and semis in the ditch. Better to be safe and get there in one piece.

Since I had the Cisplatin last Friday, I've felt nauseous and even dream about not feeling good. I'm supposed to be drinking as much fluid as I can get down. Honestly, the smell of water, juice, even 7-up...urgh. (I'm not complaining, just trying to explain what it's like going through this.)

I eagerly await the postman at the end of my driveway so I can see what bills I get daily. I did say I would update what my bills are for various scans, surgery, anesthesiologist, specialists, etc. I promise I will get those numbers out tomorrow. I don't feel like much of a story teller right now.

You have to BE ALIVE to sorrow for the loss of your hair, eyebrows, and eyelashes.

January 20, 2010
5:33 p.m.

Random smells and sensations after surgery...

Two days after surgery I had a hard time sleeping, comfort being the main reason. I could only sit up, and I mean "best posture" sit up...if I slouched at all, seemed my missing lower left lobe (lung - not brain!) hurt. So I'd sit up as though Mrs. Grashedge were standing over me with her ruler to slap my slipping wrists as I played my piano lesson.

It was my misfortune to be "housed" directly across from the "nourishment room", coffee, tea, soda, ice, crackers, etc. I love to have a cup of coffee with French vanilla cream in the mornings. Not any more. The smell of the coffee would trigger my heaving and I got to closing the door to my room. I tried coffee one morning; moved it off my tray to the window sill, then down the drain in the bathroom. Water smelled bad, even the bottled water.

Seems the only thing I could tolerate was lemon Italian ice. The broths served seemed horribly salty, and once I was on solid foods, everything tasted stale or just poorly seasoned and prepared. I will say, I went into the surgery weighing 124 and came out (with less body parts, mind you) weighing 132!! How did that happen? IV drips, of course (and constipation from all the pain killers and anti-nausea drugs).

For the squeamish, don't read this paragraph...for those who like gross, join me. After EIGHT days of being fairly inactive in the hospital, drinking Milk of Magnesia, Fleet suppositories, stool softeners, water, water everywhere, I did get to go home even though I didn't have a (here it comes) BOWEL MOVEMENT. Man, was I hurting. Two more days and finally!!! I wished I were a little kid so I could grab my brothers and sisters and BRAG...because let me tell you, I had mighty fine bragging rights. There, that's all I'll say. But if anyone reading this is going through the surgery, don't worry, eventually you too will have to let loose. I must've lost 6 pounds in one FELL SWOOP.

Okay, y'all can read this paragraph. Seriously, nothing tasted good, and the smells were horrible. Cologne, smoke, incense, scented soaps...gag me. A few days after I got home, I developed a little cough. I was VERY UPSET. The surgery had "cured" the cough and here I had a bit of a cough every time I spoke...again. This cough only lasted for a few days...must've still had some fluid in my lung. Also, SNEEZING was like a mini-death. Talk about hurt....ouch! As you can read, I'm still here.

I am taking up the harmonica...that's supposed to be a great breath increaser (Alvin, Simon, and Theodore - move over).

Although I have dreams of getting sick, I haven't thrown up and still (sigh) have my appetite. I WAS TOLD I might lose up to 20 lbs., so made sure I ate to keep my weight up there...and am still at 124 (would like to be at 112 to 114), and still have all my hair.

Please, keep visualizing me with eyebrows; eyelashes would be nice too. I'm really NOT vain, just really like eyebrows!

Will talk about the cost of things later. Today was an "ice day" so no school. I canceled my radiation but will go to chemo which is right down the street.

I will let you know that my first hospital bill came in at over $48,000 (and that was not surgery, just miscellaneous hospital charges and I am assuming, charges for the room and drugs).

January 20, 2010

10:12 a.m.