Weds, 28 Dec 2005

My Dear Friends,

Hope everyone had a Merry Christmas! Ours was eventful. My baby sister is getting married, as her boyfriend proposed on Christmas Eve in front of the family. She has asked me to be matron of honor. She's possibly looking at May 2007 so I'm crossing my fingers.

The other Christmas news is that we bought the kids each a hamster. I made Mark go to Meijer and hold one for a while to see if he was allergic before the purchase. That worked out OK so the sales clerk put the hamsters in a cardboard box. Mark bought some last minute stocking stuffers and by the time he got to the register, the hamsters had already begun to chew through the box! When he got to the car, Mark put them in an aquarium with a bag of rock salt on top for containment. The kids love their new critters.

Had treatment yesterday. The old gentleman who's a week ahead of me has started to lose his hair. Bummer. I felt tired today but the nausea wasn't too bad. Been depressed lately about the cancer and my job situation. Will join a support group at Oakwood in January. That should do me some good in the cancer area anyway.

I have six more radiations to go on the hip at Beaumont. I'm still worried about my right shoulder which has been hurting. Have to keep an eye on that.

Went out with the girls (my neighbors) to see a chick flick a couple days ago. Saw "The Family Stone". It was funny but took a turn for the worse when the family matriarch was dying of a breast cancer recurrence! Major bummer! False advertising as a comedy if you ask me. Just thought I'd warn others not to see it.

Heard from an old friend in e-mail today. That lifted my spirits.

Still have to write about the history of my case but don't have it in me today.

Please keep me in your prayers.

Love,
Jeanette

Sat, 24 Dec 2005

My Dear Friends,

This week my major milestone was tying my shoes! (I feel like a little kid saying that.) On Wednesday morning, I was about to leave to read to Mikey's class. Last week's reading had been rescheduled, as the kids got out early that day because of the snowstorm. Anyway, I found myself home alone at 9:30am. Mark and the kids were long gone for work / school and my dad wasn't here. If you recall, I was not allowed to bend more that 90 degrees at the hip after surgery. I have gradually regained some range of motion. If it hurts, I stop. With no one to tie my shoes, I considered leaving them untied and asking the school secretary to do it when I arrived. Instead, I gave it a try, bending only as much as absolutely necessary. Success!

Reading to Mikey's class was really fun. I read one book that Mikey picked and two books from my own childhood that for some reason, had missed being handed down to my brother and sister. The kids liked the older books. One was "The Man Who Didn't Wash His Dishes" and the other was "Too Many Animals", about an old woman whose house essentially becomes Noah's Ark in a flood. The last was their favorite. I was very happy to participate in Mikey's class, as it is something he will remember for a long time.

My family is allowing me to drive short distances. (So now I'm a teenager!) I confessed to Dad that I had actually driven to the chiropractor last week Friday. The kids were giving me heck all the way.

With that warning tone in his voice, Jesse said, "Mommy....did the doctor say you could drive..?"

I said,"The doctor is on vacation for the next three weeks. I said I could drive!"

Moving right along, I need to take a poll. Please offer your opinion on the following situation:

Yesterday, I received a beautiful Christmas flower arrangement. I appreciated the sender's thoughtfulness and was very pleased. The arrangement had a most peculiar smell. Some part of it, maybe the pine tree branches, had clearly come into contact with a male cat, who saw fit to mark it as his own! It was so strong that Mark had to take it outside.

I know it's not one of the flowers, as I have received this exact arrangement before and it was perfectly fine.

Here's my question: I would like to express my gratitude to the sender for their thoughtfulness. Personally, if I were the sender, I would want to know about the situation so I could call the florist and demand a refund. Should I tell the sender?

Something like this happened once before. When Michael was born, I received a bizarre-looking arrangement with a card that said "With Deepest Sympathy - your friends at work". I called work to express my gratitude and describe the arrangement. They were puzzled. Then I joked, "The baby cries a lot but having deep sympathy is a little strong!"

It turns out that another employee had lost his mother that same day. Fortunately, the secretary was able to contact the florist before the "Congratulations!" arrangement arrived at the funeral home!

Please let me know your opinion.

Have a Merry Christmas!

Love,
Jeanette

Tues, 20 Dec 2005

Hello!

Felt yucky today. Pretty nauseous. The anti-nausea pill Anzemet only seems to help for an hour or so. Other than that, doing well. Not as tired as last week.

Will write more another time, including how it all began.

By the way, check out my neighbor's website. She is my hero and my inspiration: www.jenpossible.us

Love,
Jeanette

Mon, 19 Dec 2005

My Dear Friends,

It was a productive weekend. My in-laws came in from the west side of the state for a visit. While my mother-in-law busied herself helping around the house, my father-in-law and my dad built shelving in our garage. This was something I had wanted to do for quite a while. The back of the garage space was not being used efficiently. The shelving really improved it. Mark and I were grateful for the help both inside the house and in the garage.

On Sunday night, Mark, the boys and I went to the Christmas cantata at Prayer Baptist Church, to which our dear friends (babysitter and husband) belong. The songs were moving. My new favorite Christmas song is “Mary Did You Know” which was sung by their complete choir. The pastor preached at different times between songs and gave a moving sermon about trusting the Lord to heal you in times of trial and suffering. Brought me to tears.

I was struck by the difference between Catholic services and this one. It was cool to hear the congregation just yell out “Amen” whenever the Spirit moved them. Catholics don’t do that. Heck, we barely sing when we’re supposed to, as we are very reserved.

As for my health, I finally stopped feeling nauseous on Saturday. I am starting to have pain in my right shoulder when I lift things or move to close a drawer. I will inform all the medical parties involved to see what they want me to do. I’m already in chemo so if it’s another problem, that will help. I’ll tell the radiation oncologist when I see him on Thursday.

Went to chemo again today, for Taxotere and Herceptin. Also had the required pre-meds (Benadryl for allergic reactions, Aloxi & Zantac for nausea). Took Dexamethasone, a steroid, last night and twice today. Took an Anzemet pill for nausea this evening. Anzemet sounds like an Egyptian pharaoh, so does Aranesp, the shots I took two years ago to build red blood cells.

Got a shot of Procrit in my upper arm today for red blood cells. That’s the drug they advertise on TV and in magazines. Never paid much attention til it applied to me. Procrit feels like fire entering your arm muscle but I have discovered a way to lessen the burn. I make the nurse squeeze my upper arm really, really hard while giving me the shot. They laugh because I tell them to squeeze the heck out of it and they’re afraid to bruise me but it does work. One nurse joked that I’ll probably go home and take a picture of my arm to report them. No way. (The same technique worked with the Aranesp shots I used to take. Jesse helped me once or twice back then, as my shots were due when the doc’s office was closed. He squeezed and I injected. Brave kid. Fortunately, my cousin the nurse came by most Friday nights for those shots.)

Still have all my hair (and so does the older gentleman at the doc’s office who’s getting the same chemo as me, but is a week ahead.) I am still not sleeping well but hopefully that will improve soon. I am starting to be able to lie on my good side for a short time, enough to take pressure off my back for a little bit. The main thing that helps is getting out of bed and walking around, which is a bummer in the wee hours.

About a week or so ago, I had made my way downstairs at about 3:30 AM. I was planning to switch to the reclining couch for the rest of the night. First I went into the kitchen. As I entered the room and looked around, I noticed the deck security light was casting a curious shadow on the family room hearth.

It is possible that many nights of little sleep and dark thoughts had affected my perception, but I had not seen this type of shadow before or since, despite waking up at nearly the same time every night. Standing on my hearth, half in shadow and half a clear, dark shape, was the Grim Reaper. Although it was probably my mind playing tricks, I chose to treat it as a reality. I did not cry or run. I looked straight at him and told him he has to leave because I am not ready to go yet. I turned my back on him and walked into the living room without looking again. They say visualization is important in healing and that’s how I rationalize that episode.

On a more cheery note, Mark and I have finally started Christmas shopping. We went to Meijer last night and Mikey once again got to ride on a scooter like at Costco. Mark and I got in a little bit more shopping early this evening when all of my appointments were done.

About this blog, I know that several recent readers may not know the entire story from the beginning. Next time I will briefly recap my first occurrence of cancer for them.

We appreciate your kind words and continued prayers,

Love,
Jeanette

Thurs, 15 Dec 2005

Hello!

Started radiation today. Dad drove me in his truck, as my car was buried in the snow and four-wheel drive is better in this weather. Finally figured out how to get into the truck without injuring myself.

Spoke to the surgeon's office yesterday about the pathology report. They did not run any of the tests I requested, although she told me twice that she would. She is out until the end of December so I have to get another one of my doctors to request the tests!

Was nauseous again today, and still very tired. Can't seem to shake either one. It is better than my chemo from two years ago, though. I had been down for the count for two or three days after each treatment. I remember crawling up the stairs to bed. Not so bad this time.

Haven't been motivated to Christmas shop yet.

Hopefully, I will feel better tomorrow.

Love,
Jeanette

Tues, 13 Dec 2005

Hello!

Just a quick note. Today was the day after chemo. Felt tired and nauseous but otherwise OK. We'll see what tomorrow brings.

Thank you for your continued prayers.

Love,
Jeanette

Sun, 11 Dec 2005

My Dear Friends,

It has been a busy weekend and I still have not started Christmas shopping.

On Friday, I went to Beaumont for my radiation simulation. That's the setup appointment when you lie on a hard, narrow wooden table for 45 minutes and can't move no matter what. They put a big rubberband over your shoes to hold your feet still. The technicians take digital pictures and x-rays. They draw on you and in the end, give you a few tattoos. No roses or skulls, just dots to help line up the machine for the real radiation. They gave me three. The one on the left hip was no big deal, but that darned thigh muscle seized up for the two on the right. I kinda knew that would happen.

My dad had taken me to the appointment with the kids in tow because they had a snow day. It was really hard to get into and out of his truck. We'd had six inches of snow on Thursday night. Too dangerous for the school buses, I suppose. When I was little, it had to snow like 18 inches before they considered giving us a snow day! Back then, a blizzard was two feet of snow. We would've stayed home all winter if they gave us a snow day for every six inch snowfall! These kids today have it so easy...

Mark, Jesse and I went to the Palace on Friday night to see the Trans-Siberian Orchestra. Mikey went to Aunty Lindsay's as planned (and had a great time!). When we arrived at the Palace, we paid the exorbitant $15 parking fee ($15 car, I think $30 limo and $60 if you drove a bus). We parked in handicapped and went in. I waited at the info desk and asked them to order a wheelchair for me while Mark went to the "WILL CALL" counter to pick up the tickets he'd ordered.

Mark was taking a long time, so I hobbled over to see what happened. Mark said they had no record of our order! Eventually, they traced his credit card and found the phone representative had ordered three tickets to last week's Manheim Steamroller concert in error! The ticket clerks were very apologetic and refunded our parking fee.

I joked that we had come in a bus ($60) but they didn't buy it. Then they searched the system for available seats. The seats Mark had ordered were in the lower bowl but way in the back. This time, the system spit out three tickets in the sixth row, side stage! We had to walk a short distance to the "disabled access" where the wheelchair was waiting. Some woman almost knocked me over, tripping over my crutches and then her kid did the same thing! She yelled at her kid for being clumsy.

The wheelchair ride included a jaunt around the back of the stage, past the dressing rooms and all the black trunks for the band equipment. Didn't meet any band members. Would not have known them if they walked by, as I have never seen pictures.

I had to go up only about eight stairs to get to our seat. I was the fourth seat from the far end of the aisle so we did have to climb over a bunch of people. The seats were great! We were sitting behind the keyboard player which I hoped Jesse would find inspirational as he is studying piano.
When I looked to my right across the aisle, I noticed that the first section of sidestage seats by the wall was blocked off. A tarp was covering the first two seats in every row, all the way up. I knew why when the pyrotechnics started going off! At times, they were so hot that I put up my coat to cover the right side of my face!

The concert was excellent. I highly recommend it. In the first half, they played their Christmas music. In the second half, they played other stuff, including The Flight of the Bumblebee! It was cool that the string section was made up of local musicians, probably from the DSO. It was very classy to see heavy metal guitarists in tuxedos with tails. For some reason, I respected them more as musicians. It must be human nature to respect well-dressed people. Usually, rock musicians wear T-shirts and torn jeans. This catered to a more refined audience. Even the audience was well-dressed, freshly showered and perfumed. No smell of stale cigarette butts in this concert!

Jess got a kick out of the laser light show. They had snow-making machines on the ceiling above the ground floor. The snow sparkled like green glitter when the lasers hit it. Very cool. Jess also liked when two of the guitarists ran toward the back of the arena and onto a small platform that rose straight up as they played.

In the middle of the concert, there was a drum solo. It was absolutely thunderous, like the grand finale of the Downtown Detroit Fireworks. When the drummer came offstage in front of us, I noticed two things. First of all, all that drumming had made his chest and arms pretty big (not my type though, never liked guys with hair longer than mine!). Secondly, I watched him remove his earplugs as he walked offstage. That was a good lesson for Jesse. Even professional musicians wear earplugs! I made Jess wear them to the concert and I wore them too. After I had seen my first concert (Prince in 1986) I had come home half-deaf. My hearing returned and most of the ringing went away but I said never again!

After the concert, Jess wanted to get an autograph. He and Mark had gone up while I waited by the seats. I marveled at the speed in which the Palace crew disassembled the ground floor seating and began to clean. When the wheelchair came, I had trouble getting down the stairs. Between the radiation simulation and sitting for three hours straight at the concert, my hip was not happy. I massaged the muscle after every step and made it down. I was the last audience member out of the arena but luckily the person pushing me was able to find Jess and Mark. The cell phones helped. It turned out the line for autographs was a mile long so we decided to skip it. We had a fun time and Jess is looking forward to going again next year.

It's getting late, almost 11pm. Chemo starts tomorrow. I am bummed and nervous. Not sure how I will react to the new chemicals. The infusions should take close to four hours, starting at 9 am. The nurses said I'll feel pretty good tomorrow. We shall see about Tuesday and Wednesday.

I start radiation on Wednesday. I will have to change my standing radiation time (early afternoon) on Thursday because I am supposed to read to Mikey's class at 2pm. Wouldn't miss that for anything!

I will try to write about how I reacted to the chemo by Wednesday. Please continue to pray for me.

Love,
Jeanette

Weds, 7 Dec 2005

My Dear Friends,

I am feeling a bit better today. Have decided to start doing things that improve my peace of mind and reduce stress.

Finally got the pathology report from surgery today. It said nothing. At first, the receptionist didn't want to fax it to me. When I told her we just want to know what the tumor is made of, she realized I already knew about the cancer. She was not allowed to be the one to tell me. So she faxed it. It looks like they did not run ANY of the tests I requested. (I will call tomorrow to have a fit.) It just said it was breast cancer that spread. Well, duh! :)

Called the radiation guy today. His secretary wanted to set up another appointment. I told her I didn't need an appointment, I need to get on the radiation schedule. She said she would page him and he'd call me. He did not. Guess I'll have to call there tomorrow and have another fit.

I think I am gaining weight. My SpongeBob jammies are a little tight.

Jeanette

Tues, 6 Dec 2005

My Dear Friends,

Not quite sure how to begin this, as so many things are going through my head. I don't really feel like being light-hearted or funny today.

Spoke to my oncologist. We'll start chemo on Monday. Three drugs: Carboplatin, Taxotere, and Herceptin. The last one is what I've been taking once a week since June. It's specific to my type of cancer but apparently has not been working (i.e.: it needs help from other chemicals). I will be on a four-week schedule. The second and third weeks, I'll take just the Taxotere and Herceptin. The fourth will be my "week off" in which I will just take Herceptin. I will follow this schedule for four months, then I will have another bone scan or a PET Scan. If these chemicals don't work, she will try something different.

The course of action now is to find something that works and stay with it until it doesn't work anymore. Then we try something else until I have exhausted all my options.

The oncologist pointed out that I have an aggressive cancer because it has the Her-2 protein (which Herceptin is supposed to work on) and also because it came back so soon (18 months after initial diagnosis).

She would not tell me how long I have to live, but did say it's a positive point that (for now) it's only in my bones. She said the Man Upstairs is calling the shots.

She said I do need to go to radiation. It is the "standard of care". The surgeon had said no, the radiation guy said yes. She looked it up in this huge oncology reference book. It said that radiation should happen after surgery to kill any residual cancer cells that might grow and press on the prosthesis or infect the healthy bone in the area. So tomorrow I will call Beaumont to schedule my radiation simulation (set-up) and get moving with radiation as soon as possible. The oncologist said that , as a matter of pride, sometimes surgeons do not like to admit they might have missed a few stray cells.

I was upset by the news I will need radiation only because if I had started it after surgery like the radiation oncologist recommended, I would be done. Now I will have to be in chemo and raditation at the same time! I suppose there is nothing I can do.

I have not been able to squeeze my pathology report out of Beaumont yet. The Beaumont oncologist (second opinion guy's) office would not give it to me because the surgeon had ordered it. Her office has not been helpful in obtaining it and was closed today.

I am bummed about going into treatment because other than being tired (lack of sleep due to pain in the low back) other than that, I feel fine. I am angry that I have basically "signed up to get the flu" as Mark describes chemo. I am angry that I will lose my hair. Last time I was in chemo, I felt OK after the first four days. Every time I looked in the mirror, though, my appearance reminded me of my situation.

I have asked myself a million times how this could have happened to me, as I have never smoked, drank or took drugs. When everyone else around me was drinking and partying, I was the designated driver. I ask what I did? What was I exposed to that could cause a cancer this aggressive to hit me so young? So glad all that clean living has paid off. I wonder if fate would have smiled on me if I had done something important with my life, like becoming a doctor or nurse.

I will understand if I have bummed you out so bad you don't want to read this anymore. I had written amusing things before as a coping mechanism. Cancer is not funny. It's horrible and it's terrifying.

I'm sorry, I can't write anymore tonight. Please pray for me.

Love,
Jeanette

Sat, 3 Dec 2005

My Dear Friends,

Today’s adventure was a trip to Costco. Jess was at a friend’s house so I went with Mark and Mikey. My plan was to go straight to the back of the store on my crutches to scope out the hors d’oeuvre fixings for the holidays, then go wait in the car.

As we entered Costco, an attendant took me aside to offer me the use of a scooter (mechanized chair), complete with a shopping basket in the front. I had never used one before.

The scooter had a steering wheel with two levers on it, forward and reverse.

“Um, where’s the brakes?” I asked the attendant as I surveyed the controls.

“No brakes,” he said. “You’ll be alright.”

OK…

It was hard at first to maneuver among all those shoppers and their huge carts. Costco was packed. The scooter lurched forward every time I pressed the lever, then someone would cut me off and I’d have to stop. I got motion sickness before we got halfway back. I don’t know how those old ladies do it!

Mikey took a ride with me for a little while, sitting on my left leg. He thought it was great fun, of course. I only let him steer in clear aisles. The rest of the time, he walked beside me, “to make sure you don’t crash”.

As we made our way through the store, I eventually was able to drive smoothly. It was most crowded around the free sample stations at the end of each aisle. Before we’d left home, I had asked Mark if we should have a “Costco lunch” or fix something at home. There are so many free samples on Saturdays that you’re practically full by the time you leave the store! We had opted for lunch at home.

At the checkout, Mark and Mikey unloaded the cart and my front basket. Mark handled the transaction and I went ahead to wait by the wall. I parallel parked the scooter. I was pretty proud of myself, as I still cannot do that with my car!

Right now I am sitting in the lobby of the Westland Recreation Center. Mark is playing wallyball with a group of neighbors. They do this every couple months or so. It’s dangerous sometimes. The first time they played, one neighbor messed his arm up so bad he needed surgery and spent six weeks in a cast! He has since bowed out gracefully. I don’t play. I’m just in it for the group dinner afterwards. Tonight we are going to Richter’s Chalet, my favorite German Restaurant located in Dearborn. I don’t order German food, though. This place has an awesome Beef Wellington and great desserts, as the owner is a pastry chef.

Well, I’m going to pack up Mark’s laptop now, as they’ll be done playing soon.

Love,
Jeanette

Fri, 2 Dec 2005 (belated)

My Dear Friends,

Our computer needs to be taken out back and shot. The programs are working but now the Internet access has been down. If I responded to any e-mails this week, it was while I was at Dad’s house. If we can fix the Internet connection tonight, Mark can post this. If not, I’ll go over Dad’s and post this tomorrow. Lots of people have been asking how it’s going.

I wanted to share with you a situation that has happened to me a couple times since I’ve been on crutches. I feel bad sometimes when this happens but I have to answer people’s questions honestly.

Dad took me to lunch at Big Boy around the corner yesterday. As we were leaving, we passed an old gentleman at the door, waiting to be seated. He asked what I did to my foot, fully expecting me to laugh and tell him I was clumsy and had tripped on something. What a stunned look he had when I told him, “I had a hip replacement. I have cancer.”

I’m sure the poor man was just being sociable and making conversation. The chick at the credit union had a similar reaction when she asked about my crutches.

I was able to make the guy at Big Boy feel better by saying, “You should’ve seen me two weeks ago!”

He smiled, ‘Oh, good, a marked improvement!”

I do feel bad answering their questions honestly. No one is expecting my response. Oh well.

Dad took me to pick up the kids from school today. He’s all for getting me out and about. I actually went into the school and down the hall to retrieve Mikey while Dad went downstairs in the school library to get Jess, (The latchkey separates the big kids from the little ones.)

Next week, Dad says we’re going on a field trip to Home Depot or Lowe’s. To me, that’s like walking to China but I’ll give it a shot.

People have continued to be wonderful in their support. I’ve had to call off the church ladies, who were so generous in their cooking that we needed a couple days to catch up! They’ll start up again next week.

Received an envelope from my catechism class. (I had been team-teaching with a very kind, caring lady who has now taken on the whole task herself.) The envelope contained Get Well cards the kids in the class had made. I had disappeared from the class after my recurrence but did visit them the day before surgery. I was touched by their cards and prayers. It brought tears to my eyes, especially since I had played the “bad cop” in class, keeping order.

Mark says he can drive me to visit the class this coming Tuesday so we’ll see how that goes.

Mark’s Tante (Aunt) Heike sent me a care package from Oregon. It had a variety of fun stuff like candy, soap, a candle, etc. I was amazed at the efficiency of the packaging but was reminded she had years of experience, having had to pack fragile items for her business.

As for my health, the worst problem is still the stiffness and lack of sleep from waking up at 4am when my lower back hurts. I usually go down to sleep on the reclining couch. In the past, I had liked having a hard mattress because of my back problems but now the hard mattress is working against me, Maybe I should try to sleep on the couch all night.

That’s it for now. Just have to figure out how to post this.

Love,
Jeanette