Heartburn and radiation...

Wow. This is about the worst thing I've experienced. Never having much heartburn or indigestion before, this is a totally new low. Apparently after several weeks of radiation to the esophagus, it becomes inflamed and, as a man going through this told me the other day, it feels like there's a "puffer fish" about half-way down your throat. Everytime you swallow, this ol' puffer fish just blows up and causes everything to stick and then horrible burning follows. And that, folks, is why I'm going to get myself in a mess of lost weight trouble with this whole treatment. The radiation dietician told me she checks my weight weekly and, so far, so good. I've stayed 124 lbs. (fully clothed with BOOTS on) for the past two weeks. I was about that on my scale, but now I'm under 120. She threatened me with a feeding tube if I don't take on as many calories as I should. No way would I get a feeding tube. Yuck. A girl when I worked at school has one. Dirty looking things. Since I can refuse a feeding tube, she said they'd put me in the hospital. (I really don't think they can do that either without my consent. ha ha) So I will try to eat Jello, popsicles, mashed potatoes (they too give me heartburn) and anything else I can keep down.

This past week I had "break through" nausea (i.e. where the anti-nausea pills just didn't cut it anymore) and actually got sick. I guess I got sick while in the hospital due to an allergic reaction to some of the pain meds (no morphine for me!) I will admit to feeling a tad bit easier after throwing up. Lasted for about an hour before that hot feeling came back in my throat and my stomach knotted up. Have to admit I just laid my head on the counter, cried for about 2 minutes...then started pounding the counter with my hand, damn it...damn it....damn it. Yep, that would be me, cursing and crying and feeling sorry for myself until I laughed at myself for thinking that will help. It did help though. I got those negative feelings out of me and onto the counter. Thank God I didn't beat my counter with a cookie sheet.

One time when I was just going through one of my black Irish moods because the Spritz cookies wouldn't come out of my new Spritz maker and do I love Sprtiz Christmas cookies- oh this must've been about 15 years ago - I grabbed up my cookie sheet and beat the hell out of it against the counter. Yes, Virginia, I had to throw it away, along with the metal Spritz tool (which I pretty much beat up at that same time.) Did I feel better after killing the cookie sheet and the Spritz maker? No, I felt pretty stupid...would I do it again. Probably. I can certainly see me losing it from time to time. My nature. I would certainly hate to grow up all the way and be calm and certain and passive!

Anyway, while I have heartburn, esophagitus, whatever it is, I am not feeling so nauseous and won't until I go back for chemo in another two weeks. Yes! No chemo until the 12th of February!

Saturday, January 30, 2010
6:55 a.m.

La, la, lovely Lauren....

My 27-year-old daughter Lauren (aka Bubby) gave up her Chicago job and address and moved to Iowa to be with me during my treatment and recovery. I'm overwhelmed with gratitude that any of my kids would do this.

Since Aisling (my 14-year-old) and Scout (my retarded 3-year-old little boy dog)are the only family that has lived with me since 2003, it is so nice to have another adult here. Am I taking advantage of it? Who? Me? That would be a definite YES!



I am selfish enough to glory in Lauren's being home. You have to understand Lauren. She's a natural optimist. When she was a baby, I can't recall her crying. She used to lay on the floor and play - with her hands, toys, air, spit bubbles, you name it, she was entranced by it. (No, she wasn't retarded; just a very happy baby.) By the time she was 18 months, she was doing 50 and 100 piece puzzles. Couldn't understand a thing she said, but you knew she was smart as a whip - and always happy with whatever she could find to entertain herself. Gullible too. My oldest daughter Allison convinced Lauren she was adopted by us from an Eskimo family and that she, Lauren, should pack her bags and go live in an unfinished house in our development until her REAL parents came for her. (Yes, Allison, you always did want to be an only child.) Thank goodness you weren't though, or guess who'd be living with me, taking "care" of me at 7 months pregnant? You, that's who!

(From left: Kokotts: Lauren, Katie, Allison, Aisling, non-Kokott Christy)

Lauren is giving up her slice of Chicago life. She will never know how much I appreciate her putting her life on hold for me. Being here for me. Keeping me, while not exactly excited to go to the YMCA, feeling guilty enough to actually go a few times a week.

I hope my fatigue doesn't quench her innate good spirits. Thank you, Bubby.

January 27, 2010
4:16 a.m.

Isolating

Cancer can be isolating. When I'm out and about I look at people now and wonder, "Do they have cancer?" How would I know? People don't look at me and see "cancer". I have no outward signs of it. I still look like me, act like me for the most part. I have lost a bit of my sense of sarcasm and cynicism.

I still find it hard to believe, accept, that "Hey, I have CANCER." I don't feel like I have cancer. I feel like the cure is worse than the disease. I felt fine before the surgery, before the chemo, before the radiation. Not to deny that I have it and need the "treatment", just that the treatment is what is killing me! (I'm smiling big time here.)

I like to hear people's stories (Chris from Chicago, you tell a marvelous story - you should take this time as you recover to WRITE A NOVEL, I'd buy it and I'm a reader from WAY BACK.) The American Lung Assoc. doesn't have any support groups in Des Moines. Can you believe it? Breast cancer support groups - almost every woman I've talked to in person at the Cancer (free) Center has breast cancer. If there are 4x as many people getting lung cancer, where are all the support groups for that? I don't want to feel isolated. I want to, need to hear survivor stories from people with lung cancer. WAHHHHH! Am not going to hear any of those stories in person; I suppose I'll have to read about them. But how do I know if the person is still alive when their last post was two or three years ago? I want them to BE ALIVE so I can have hope that I will be like them. I want them to be my age, in good health other than the cancer, and I want them to live long and prosper (okay, so I'm a Star Trek fan). Is that too much to ask? I just don't want to feel isolated.

January 27, 2010
4:06 a.m.

How I'm feeling these past few days...

tired. And according to my radiation oncologist, I will only get more and more tired. I have always been an active person; painting, gardening, house rehabbing (yes, knocking out walls, drywalling, plastering, stripping paint from window trim, staircases, etc.) It's hard to absolutely have no energy. I asked Dr. T about that this morning. He laughed and said I am not even 1/3 of the way into this whole process. I wanted to cry. I don't like NOT having energy. I wake up in the morning, shower, beautify myself (smile) and then am so tired I want to take a nap. I drag myself around by the back of my shirt (and believe me, that stirs up a lot of static electricity in my hair) over to the couch and collapse in a puddle. No, half the time I don't even turn the tube on.

Just kind of lay there like a rag doll. That's how I've been feeling. I tried to throw up this morning but after 20 minutes of heaving, realized that as a HUGE mistake. I thought if I actually could sick it up, I'd feel better. I don't think it works that way.

When my brain gets tired, I don't even inspire myself. This whole "How I'm feeling" feels flat and I do apologize for that. But I feel flat. At least the chemo-farts are gone. Man, can you imagine being pumped full of foul smelling gas and then not passing it? It's been better for one and all that I stayed home until that passed (no pun intended).

Tuesday, January 26, 2010
3:05 p.m.

P.S. I have an appt. with the thoracic surgeon tomorrow and he'll let me know if I'm "healed". I get X-rays taken first; I know nothing will show - they got all the big tumors, anything left will be microscopic. So another exercise in futility. Unless my ribs didn't return to their normal position after they pulled them apart. Ouch! I've tried to find an explanation of my surgery on line but never did find anything too definitive. Like, did the doc pull my whole lung out and disconnect the parts to be removed on the table, then stick it back in like silly putty in an egg? Not even any vids.

My Onliest Big Sister Anne Marie

When I was a little girl, I had a sister 17-months older than me who was definitely Anne, the Princess of Everything (that was the name of a book). My grandmother was Anne, my mom was Anne, and my big sister is Anne. We sat across the table from each other and I copied her exactly. I ate with the "same" hand, she ate with her right and I was her mirror image, eating with my left. We'd even sit on the toilet together (yes, I really remember that.) She'd brush right-handed, I would brush left-handed so we'd both fit in by the sink. She was everything to me after Mom and my trumpet-playing Dad.

We both got married and moved out of Des Moines. My journey away lasted 25 years. She lives in Vancouver, WA. Because our parents died young (mom at 39, dad early onset Alzheimer's diagnosed and institutionalized at 54) we are all we have (plus our various significant others, best friends, and children).

Anne Marie continues to be my inspiration and my role model. She has it together in a way that defies any attempt at imitation on my part. She sends me motivational books and reminds me there is a larger universe outside of the one that revolves around me.

Anne Marie, I love you.

My blog on brother John (sibling #8)

It's been a few days since I've posted. The double-dip of chemo on Friday left me feeling so nauseous and pretty wiped out. I convinced myself that I would feel just as crappy on a ladder painting as I was feeling making wrinkles in my couch so painted the guest bath, made spaghetti sauce and meatballs, and even (thank you, Lauren) went walking at the YMCA for 40 minutes. I did come home after that day and sleep.

I wanted to talk about my brother Johnny. I am the second oldest of ten siblings - all of whom are the star in funny, sad, weird events that occurred when we were growing up. Funny how our memories place each of us in that starring role. Regardless, I remember begging Mom to "have another baby". The baby I "got" was my brother John. I was maybe 11 or so when he was born and a cuter baby boy you've never seen. He was my own living doll. When I was home from school and on weekends, he was attached to my hip. If he'd get scared or hurt as a little boy, he had to find me to get comfort. I remember a time when Mom and the other "big kids" (Anne Marie, Debbie, Mike) and me would sit in a circle with Johnny in the middle....every single time - he came to me. I loved him then as much as I love him now.

When my husband died, Johnny came for the funeral and made me laugh so hard I snorted. He's an all around great guy, great brother.

He called me the other day and said if he could take this cancer away from me upon himself he'd do it in a heartbeat. He said it didn't seem fair after the loss my family has taken from my husband's death. He made me cry saying how much he loved me and why couldn't this have been his instead of mine.

Intellectually I know there are no deals to be made with either the devil or God, but I knew he meant each word that he said. My brother John lives in Chicago and is the best dog groomer around (www.cleandogchicago.com).

Thank you, Johnny. I love you.

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.

The Ice Storm in Iowa

Iowa is getting dumped on right now-freezing rain and ice. Lauren's car is completely covered.

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.

Making tracks

In June I had a cough that I attributed to a respiratory infection that I got while working with a special ed student. Through the summer I continued to cough. I remember one night as I was watching television, I timed the interval between coughs to about 2 minutes. For those of you who DON'T know me, I LOVE to talk as much as I like to listen to a good story. This cough was devastating...I couldn't talk without coughing.

I was scared because this wasn't the typical kind of cough I get when I get a cold...just a non-productive cough that wouldn't go away. My oldest daughter was getting married in October and, as a widow, I would be giving some little speech on her big day and didn't want to exclamation point each word with a cough. I tried to get into Dr.'s Now (a walk-in clinic) and waited an hour before deciding I had too much to do and would return after the wedding.

The following Monday I had chest x-rays taken. The doctor there told me there was a spot (about 2 cm.) on my left lung and she recommended a CT scan. (This was about 10/19/09). I had the CT scan and it came back with no real diagnosis. A visit to a pulmonary specialist was then made sometime in November and by the 30th I had been in for a lung needle biopsy as well as a PET scan. (Why did I wait so long?) The diagnosis which came on December 2nd was "You have lung cancer. Adenocarcinoma, looks like stage 1A. We'll get you into a thoracic surgeon and he'll perform surgery to remove the lower left lobe of your lung and you should live to be an OLD lady (yeah, the old lady who lived in the shoe...)

The photo above is the aftermath of the incision. As you may be able to tell from the designer gown, I was still in the hospital. (smile) I will say although it hurts like a son of a gun still, my staples/skin healed very fast. (Let's hear GOOD SKIN...yes, I have wrinkles, but HEALTHY wrinkles...not that many...I don't wear my cheaters so if I have them, I can't see them. I'm rambling....get used to it.)

After the surgery, I was surprised when the chemo oncologist and then the radiation oncologist came in to my room to introduce themselves. I believed "they got it all" and I was "cured". Apparently it was more involved than the PET scan showed...and the staging went from 1A to somewhere between 2B and 3A. Those "odds" didn't appeal to me - 13-24%. Both doctors told me that I should not look at the stats as I don't fall into the usual category. I'm younger than the people in the statistic group, never been sick, have no other health issues, and didn't lose any weight, had no shortness of breath, wasn't coughing up anything and had no clue that I was "sick" (sometimes the cure is worse than the disease - it was for me up to this point.)

I started radiation on the 13th of January 2010, chemo on the 15th (cisplatin). On the 18th I started a week's worth of Etoposide (daily) and on Friday of this week I'll not only do the Etoposide, but the cisplatin as well. (Apparently Etoposide aka VP-16 doesn't make you throw up, it's the cisplatin.) After having imbibed intravenously of the cisplatin I really wanted to make the acquaintance of the porcelain throne but just dry heaves and I decided to forget it and just kind of cry a bit and swallow a lot!

This whole thing is no fun at all. *I choose life** My ribs, lung, my whole left side hurts but! I can sleep on either side again without too much pain (and it's been almost 5 weeks now). The radiation makes me feel like I have heartburn (I don't care that the tech says I shouldn't feel that yet and "it has to be the chemo"....) Maybe I'm a bit of a hypochondriac...

Etoposide (VP-16) is the chemo that will wilt my hair...not to worry though, I have two great wigs hiding in my closet waiting for the light of day. VP-16 isn't supposed to make me feel nauseous but they dosed me with anti-nausea enough for 3 days...thank you, thank you, thank you!

I would like to let people know how I'm feeling, what this is costing (not to get money, but just for those going through this who are curious - thankfully I have insurance), and the ups and downs of the physical as well as emotional side of having cancer. This disease makes me feel so isolated...then I sit in the chemo or radiation treatment area and see so many people...all ages...some very very young...and realize I have lived a wonderful life, with a handful of tremendous friends...and loving children.

Thirty some years ago my mother was diagnosed with Hodgkin's disease and went through chemo, radiation and something I remember being called "mustard" treatments. It was a horrible ordeal and I was very scared thinking my experience would resemble my mom's. Medicine has changed in the past 30 years.

January 19, 2010

Join me next time for the costs (submitted to insurance) as well as my incredible family and support network.