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Tuesday, December 14, 2010

Dec. 13th

I did not have to have my last session of chemo this month. I had the flu for 2 weeks which postponed it. Then Dr. Rushing decided not to "put me through it". I will have a CT scan next week to check the "spots" on my lungs. I also have to meet with a thoracic surgeon about her thoughts on how to proceed. Thinking positive and excited to be going to Iowa to have Christmas with my two daughters.

I am getting stronger. More energetic. Cleaning and reorganizing the house. Baking cookies and bread. It feels so nice to be getting back to normal. Even stopped by our old dance studio and may go to their party on Thursday. I miss dancing so much.

Monday, November 22, 2010

Monday, November 22

Sorry, it has been so long since last posting. I cannot completly explain how chemo makes you feel. It sucks most of the life out of you. You cannot even think any thoughts other than "I feel terrible". My third round was the worst. I was vomiting at home for two days. So weak,I needed help to walk. My legs just shook. I knew I needed to move to stay strong but you just can't. I could not stand up to even shower.

Even the second week, I still did not feel great. My labs were off, potassium low, sodium low, Hgb low, platelets low. Expected to get another transfusion like during second round. But I did not. Yea!

I got a repreive this week of Thanksgiving by not having chemo. I go in next week. I do hope I get to feeling stronger this week so I can tolerate the chemo better.

Sunday, October 3, 2010

Sunday, Oct. 3rd.

Well, readers here it is 16 days since my last post. I apologize. I have wanted to post a blog but was too tired.

Sarah's wedding was beautiful on September 18th. I will add a seperate blog on the wedding if that is ok with you.

On to medical updates. We drove home from the wedding on Sunday the 19th. We missed our exit and dorve almost to Chicago, Il before we could turn around. Argh. So mentally tired.

Monday the 20th, I have a mountain of laundry to do and so much to put away. Randy went out to scour up work. I am to wait for a call from IU Cancer Hospital for admission for chemotherapy. I got the call at 1:00 PM. We got there at 2:00 PM. What a day.

Resident arrived with med student to do medical history. The inevitable IV attempt. Took 3 tries and one blown vein. It's finally in, hope it lasts the week.(it did) Randy left to go back to take care of Cherie. I got my pre meds, anti nausea meds mostly. At 10:45PM I got my first does of chemotherpay. 2 different meds plus the continuous Mesna, to protect my kidneys and bladder, ran 6-8 hours. Ended up sleeping off and on through the night. No nausea.

Dr. Rushing and his entourage arrived around 8:30 AM. Now I have the rest of the day. What to do. The laptop helps alot. They are going to up my chemo each day by 4 hours so by Friday, I can get out by noon.

More to come......

Friday, September 24, 2010

Thursday, September 23rd

I apologize to my readers that I have not written for 10 days. ALOT has happened in 10 days. I will try to condense this logically, if I can. Bear with me. I think Chemo brain is hitting early.

On Tuesday, we met with Dr. Rushing , a wonderful doctor. He said the spots on my loungs and liver had grown 1mm. So, chemo is a definite. We probably spent an hour with him. He is very personable. The shocker is chemo is to start Monday. The Monday right after Sarah's wedding. Ugh. Then Tuesday is my birthday. Double ugh. I HAVE to be admitted to the IU Simon Cancer hospital for 5 days! Shocked. Cried. Feel numb. He wants to start me on Ridilan. States it will give me more energy for the wedding. Whatever, just do it , get it started.

Wednesday, the 15th, I spent the day, packing, checking my lists of things to take up to the wedding. The only thing I forgot was Randy's dance shoes. Malte and David arrived mid afternoon and we had a good visit. The dog like them, she jumped up on David's lap and slept. We went to dinner at my favorite restaurant, Margarita's. This was my first meal in a restaurant in months. Malte was my foreign exchange student for Sarah's senior year of high school. Her idea for the exchange student. We would have had a student the year before but we were too late with our application. I say it was for the best. He was perfect.Never complained. Did his own laundry. He loved the bread, just regular white/wheat bread. He said they did not have "soft" bread in Germany. I could not keep enough in the house.

Thursday, the 16th, we left for Michigan. My car is loaded full. Good thing I sent stuff up with Sarah, or we'd have to take the van. Not bad trip 3 1/2 hours. We drove up to Union Pier, Michigan, where the wedding is to be. Of course we couldn't check in. Went to Melodie's cabin and hung out till it was time to meet my daughters for our spa appointments. We had a good time at this spa. We got manis and pedis. Newman went with us and he behaved nicely. Newman is Sarah's french bulldog. He is a cutie. Weather is yucky, windy, rainy, cold. Sounds like a hurricane in this cabin.

Friday, the 17th, was a very busy day and exasperating due to the Inn owner. He is passive/aggressive. Says you can to anything but then says it can't be that way, his way is better. Mel and I gave up. Looking at the weather channel, it is supposed to rain tomorrow. We need a tent. Sarah doesn't want a tent.

I will finish this catch up tomorrow.

Tuesday, September 14, 2010

Monday, September 13th.

Five days to the wedding. Wow. Sarah picked up her rental car and we loaded it up with wedding stuff. Less for Mom to haul up in three days this way.

Still little things I needed to get still. Ran errands with Randy. Went to my cancer support group tonight even though I could speak loud. It was nice to see everyone and even meet a few new people. Had a good time. Laughed.

Sunday, September 12th

Lazy day. Still had to go out on errands. Missed most of the Colts football game. Oh well, they lost miserably anyway. Worked on decorations, talked, walked the dogs. Had a good day. The weather was beautiful. Made hamburgers for dinner. Woo hoo.

Saturday, September 11th.

Sad day 9 years ago. Watched some of the tributes and speeches this morning. Sarah and I are off again to search for supplies. Enjoying time together. The dogs seem to be settling down. They will play together. Then crash.

Randy gone all day to Penrod. Another year I couldn't go. Oh well, maybe next year. Rained this morning. The first rain we've had since July? Nice anyway. Ordered pizza when he got home. Had much more trouble eating it. Took an hour and lots of coughed to eat one slice. No more for awhile.

Three hours is about my energy level right now, out of the house. Inside I can do laundry all day, at my own pace. I even am cooking small meals for Sarah and Randy. I am swallowing so much better now. Do not have to puree foods anymore. Can take pills with water. So better.

The redness o my neck is all bur gone. No one would know. Skin in not dry or peeling. So I am all good for the wedding, my goal. However, my voice is still a whisper. 4 weeks now. Doublet it will be back by Saturday. Oh well. I look good, that's all I wanted.

Friday, September 10th

Yea, Sarah is here. Had to pick her up at airport at 5:15 AM. That's the only part I hate. Too early. We all tried to go back to bed for awhile. Everyone slept but me of course. The two dogs will take a bit of getting used to each other.

Busy day. Off to dressmaker's to get the wedding dress bustled. Flower Factory to get supplies to finish to decorations. I'm exhausted after three hours.

Big day today. Actually ate a Chickfil A sandwich. Wow. Took me a half hour but I did it and waffle fries. Good day. So glad Sarah is here and I get to spend sometime with her alone before all the craziness starts.

The dogs are still spatting. Newman wants her to play and she just wants to lay around. They'll get better.

Thursday, September 9, 2010

Thursday, September 9th

This is a momentous day. I feel pretty good. I hung out with my husband all day, well mostly. We ran errands allday. Had lunch with a friend at Olive Garden. Yum.

Got a BIG check from one of my cancer policies. Yeah. Straight to savings. That policy was a good decision to get last Oct.

Tonight I ate BREAD. Yes, I can't remember the last time I had bread. A month? Anyway it was delicious. Plan on pizza tomorrow.

Also was able to yawn and "pop" my left ear. I can hear out of it now.

Good day all around. Sarah will be here tommorrow. Yeah. Nine days to wedding, Can't believe it, but it's finally here.

Wednesday, September 8th

All the dead skin ahs peeled off my neck. It looks good. No redness. No pain. Left ear continues to be painful but less than last week.

Had a massage today but she could still not loosened up my neck. It is "locked". My need to visit my therapist in Columbus. Doubt I could get in with her before the wedding. Would be nice though.

Randy gone all day working. I couldn't get interested in doing aything. So bored. There is much to do but can't get into it.

Sort of sad or depressed, not sure which. Doesn't matter. The day is over.

Tuesday, September 7, 2010

Tuesday, September 7th

My radiation burn is fading rapidy. It is drying and peeling off. Keeping putting radiation cream om it. I may be ok by the wedding and not need a scarf.

Did alot of internet buying today. Found some leopard dance shoes for the wedding, I hope they get here in time. Found another wig cheaper on line then was in the wig place. Got the dog a harnes sfor the car, it will keep her from hopping back and forth. She can be distracting. Got her a dress and a coat for winter too. Yeah , yeah,I know, dressing up the dog.

Randy had chorus practice tonight. Sherry,girl from work,came by with a carrot cake and homemade applesause. MMMM. We had a good visit.

Monday September 6th

Labor day. Last year I went back to work this weekend. Not so this year. I miss work. I miss my fellow workers.I feel bad by putting extra work on them.

Mom and Dad took me to the grocery store, which I needed done. They left after lunch to go visit my aunt and uncle. Randy got home about 3 PM. See nice to have him home finally.

Watched a moive from the red box, Backup Plan. It was good.

Sunday, September 5th

I really miss Randy. He calls me so I can heaqr his voice eventhough I can't talk. Trying to rest my voice, to not strian it.

My folks are her to keep me company. While he is gone. Pretty much another boring day. Tried to knit some.

My swallowing is getting a bit better. Can use applesauce now instead of pudding to take my pills.

I am sleeping better. Less wakening up to cough stuff up. Gross huh?

Saturday, September 4, 2010

Saturday, September 4th

The weather has really changed. It is relaly chilly today. Down in the 50"s. Tuesday it was hot and the driest August in all recorded history. So windy, hurts my ears.

Dog is driving me nuts, all she wants to do is smelly everything. It is annoying. Sniffing everything.

Went to library, got lots of cookbooks for cancer and on chemotherapy again. Need to reread some thngs.

Mom and Dad came after lunch. Watched football with Dad. Mom made dinner.
Had a nice evening.

Thursday, September 2, 2010

Thursday, September 2nd.

Randy in and out today. Getting ready for a job in West Virginia over the weekend. I will miss him terribly. I will keep myself busy. Hoping to sew Sarah a purse. Do my chair yoga and rest. My friend, Jo, came by and we did some shopping.

Got my hair cut real short tonight. So it will be easier to wear my wig and if my hair falls out, it won't be so distressing.

Had a massage today, helps quite a bit. My neck is so tight and my ears still hurt so bad. Usually she makes my ears feel better immediately. Not so today. Just a dull ache now versus stabbing pain. So guess it is better overall.

It has been so helpful to have people bring in food. What a treat to just open up the freezer or fridge and nuke something. I will definitely payback the gesture when I am asked to for someone else.

Could not nap today but rested watching reruns of Glee.

Wednesday, September 1st.

Wow nothing to do today except rest and try to increase my fluid intake per Doctor's orders. I've settled on a insulated container with a straw , so if I can consume 3 of these a day I will be doing okay. I did manage to take an hour nap today. I am not a napper so it was weird but I needed it. Since I am sleeping only 4 hours a night.

I want to thank my husband for being so patient and taking me to almost all of my treatments. He never complained and was always there for me. Thanks, Honey.

The skin on my neck is really red and itchy. The cream they gave me helps. I have to keep it covered from the sun also. If I didn't mention it before the redness during treatment increases through out the week so by Friday your skin is so hot to the touch and "burning". I had to use cold compresses on some days to knock out the burning feeling.

Lazy day.

Tuesday, August 31, 2010

Tuesday, the last day for radiation

Hopeful today. Randy came home with 2 bunches of flowers and a ballon taht said "Get ready, get set, get well". So sweet of him. Oh, a card too.

Got to clinic alittle early. They took me early again. The girl who was to give me the wig, forgot it. Bummer. They let me bring my mask home. I took it wierd. Will probably burn it sometime.

Waited forever for Dr. McDonald. Bob the nurse really upset me, he told me the effects of this radiation will get worse before it gets better and that by 3 weeks I may be able to speak and swallow alitlle better. Started to cry. that means I still may be a mess at the wedding. I so do not want that. I am so upset. They both told me I needed to rest alot, keep hydrated,& try to eat.

Randy filmed me ringing the bell. You get to ring this bell when you have completed your treatment. It was louder than I thought but freeeing to do it.

Didn't get out till almost 5 PM. Argh. Traffic is bad. Tired when I got home, of course. Back to the couch with Cherie. Tried to processed some for for myself tonight and got all gaggy again. Well that's out now.

Got a new batch of food last night. So had some of it tonight. Yummy.

Monday, 30th day

Got a call beforelunch that I could go in early for treatment. Of course, I went. No one was there at all. Went so fast, Randy didn't even come in with me. I did it on my own. The radiation techs were proud of me. 1 student even siad I was here on her first day. My first day was bad. Anyway, I'll miss all my friends today.

Had a slight breakdown today when I was cooking. well really reheating , lunch. The smells got to me and I started gagging and had to leave the kitchen. First time that ever happened, Bob the nurse said it may happen.

Run quite a few errands but wanted to rest some as we are going to a CSC dinner and lecture by Dr. Rushing. I knew they wouldn't have anything I could eat, so brought a smoothie.
Spoke to Dr. Rushing before the meeting, he remembered us. The lecture was on managing the effects of Chemo. Very interesting. I was tired when we got home. Hungry too.

Sunday, August 29th

Feel abit more rested today. Not sure why. Still wake up choking all night.
Randy has Quartet practice this afternoon. I hope he is not gone all afternoon.
Well he was gone till 5PM. I feel lonely when he is gone. I miss him.
Coughing up lessens by Sunday. Neck is so red. Starting to itch some. The Jeans cream helps.

Saturday, August 28th

Today a Belly Dance friend came over to teach me chair yoga. It was very refreshing. I will continue to do what she taught me.

I felt energised enough to drive to Bloomington to see the folks and swim. The heat has returned. Of course I have to cover up my neck. It looks bad but really doesn't hurt. However, once I got on 37 south I realized driving was not a good idea. Spacey and "tired" feeling. Well I kept going. Not smart.

Had a good swim and visit with my parents. Took Cherie with me of course. She enjoyed smelling everything. She hates the water.

Coming home was terrible. Very tired. Finally had to stop in Martinsville to take a nap. Still hard driving but finally got home. OK so no more driving alone long distances.

Randy was gone all afternoon and most of the evening at a Quartet thing. He enjoyed himself.

I was sound asleep on the couch when he got home.

Friday, 29th treatment

Same type of day. Nothing special. But so glad I only ave 2 treatments left! Wahoo. By Friday, I am so exhasuted. Can't wait to get home to my couch.

Thursday

Coughing up phlem all night. Little sleep. Try not to wake Randy. All gets better by 10 or 11 AM.
Treatent without incident. One of my "cancer friends" siad she'd give me one of her wigs. That mibght be fun. Have to shampoo it first. But cool. The same people arerive every afternoon for their treatments so we talk. Sort of a support group unofficially.

Swallowing is so painful. Smoothies are the only thing that feels good. Trying to grind up the food people have brought. Randy is enjoying not having to cook.

Thursday, August 26, 2010

Wednesday

Another day of the same, tiredness, blah feeling, coughing, increased phelgm.

We got new phones, verizon Ally, which is Droid like. We have struggled with all apps, etc. Can't get the blue tooths to work either. So Randy and I went to a class this morning at Verizon. It was helpful. Go figure.

Treatments are going well, less stressful. Too tired to go to the thyroid support group tonight. Maybe next month.

Tired to sleep in bed tonight.

Tuesday, 5 treatments left to go

Another bad day. Think this will be my life for awhile. Slept a few hours total. I cough up phelgm all night. Sorry if this is gross. It's annoying and the coughing is painful.

Met Dr. McDonald, I do not have pneumonia and my blood work was ok, white blood cell count not up and hemoglobin only slightly down. He declined the G-tube, thinks I can make it. Gave me script for liquid pain med. It works.

I just feel so bad. I look bad. My husband, Randy, is very helpful, makes calls for me, runs erands, does what he can for me. He says he feels helpless and is angry that I have to suffer. He has not gone to a group meeting yet. I will work on that. I think it will help, I like my group eventhough I didn't go yesterday. I cannot talk at all and the constant coughing up phlegm would be disruptive.

I do very little, trying to do laundry. I am so tired. But I look forward the end of my treatments next week.

Monday, August 23, 2010

Monday, 6 treatments left

Bad day. Slept terrible on the couch. Feel like I have a fever. 100 degrees. Feel crappy. Got to see Dr. Walker and Dr. Lager before my treatment. They ordered chest x-ray and CBC. I am to try an allergy OTC to dry to dry up the phlegm. May get a nausous med. tomorrow. She asked about G- tube, said it wasn't out of the question even thhis late in the game. My skin actually will get worse the first two weeks AFTER radiation stops. Dr. Walker says it doesn't make sense but it happens. Great. So could be bad at wedding. Will get new skin medication. Great again.

Made it thru treatment okay. Just so tired. Couldn't go to group. My voice is less than a whisper this week.I had Randy ear candle my ears. They feel slightly better, especially the right one. Which hurts the worse all the time anyway. IBprofen takes off the edge off my jaw pain. At least I don't want to rip my head off.

About 6 PM, the increased phlegm has started. Why? The treatment? My doctor friend Ted told me the radiation makes the cells slough off so it makes sense that 3 hours later I have more problems. Why can't the radiation doctors tell you these things? Here's to a great evening.

Monday

My thoart is really sore. Razor blades are here. Darn. I thought I was going to get by without this. Crap.

Slept on couch last night at least Randy can sleep.

Sunday, August 22

Slept poorly of course. Coughing, hacking up phlegm (sorry guys, it's gross).

Got myself together, as my friend Diane is coming to visit. We went to Walgreens for some items I needed. Going to try Lactose pills, chewable, to see if I can tolerate dairy. So went to get yogurt. We had a great time visiting. Thnak you for the gifts, the purse is way too cute. The necklace is beautiful. Thankyou.

Yogurt makes the pills so down easier than applesauce. Tried opening the capsules and dumping the medicine in the yogurt to make it easier. Well it's easier but tastes TERRIBLE. Not doing this again. Swallowing is getting so hard.

Randy finally got home after 8 PM. Went to bed but only stayed till 1:30 AM. Got up coughing and choking to death. Finally threw up , all phlegm. Thoart is killing me. The Razor blades are here.

Saturday, August 21st

Well, last night I couhged for 3 hours straight. Finally got up and took a sleeping pill. Slept 4 hours. Feel extremely poorly today. Feel all out. Don't want to do anything. Stayed on couch all day. Finally around 5 or so I finally could get up and take the dog for a walk with Randy. Randy was nice and hung out with me.

Decided to not sleep in bed tonight and keep Randy up all night. He has a gig tomorrow. Slept on couch.

Sunday, August 22, 2010

Friday, 7 treatments left

Fogot to give kudos to my dad for cleaning my kitchen floor when they were here. Sorry, Dad.

Busy day, many errands. Got new anroidish phones. We can't even figure out how to answer it. Took us hours to figure how to get into the menu. Frustrating. Will have to find the direction book.

Friday nights are not the same anymore. Always Pizza night. Not now, I can't tolerate the cheeese , let alone the bread right now. Miss it. Miss my salty snacks too. Oh well, It'll get better. So I had spagetti.

My coughing seems to get worse as the day goes on. Starting coghing before bedtime.

Thursday, August 19, 2010

Thursday, 8 days of treatments left to go

Mom helped out alot today, by doing laundry and cleaning out the refrigerator. It's been awhile.

Randy got home, did two jobs. Missed him. Glad he is home.

Treatment was delayed 45 min. argh! Able to tolerate withut med, butr ws getting nervous. Will see how tomorrow goes. Other patients can't beleive I do it without medication. Talked to quite afew patients today while waiting.

So much pain in Right side of head, took 3 IBprofens on way home. Coughing is slacking up. Feel like sitting on couch all evening. Maybe a margarita will help.

Wednesday

Terrible start to this day. Had to get Randy to airport for a job. Had a terrible time driving. Very unsteady , spacey, "loopy" as Randy called. Got him to airport late so he missed his flight. Had to wait for next one.
Slowly came home and went back to bed.

Bad headache, pain in jaws, mostly right side. Ear on right feels "full". Feels like a pencil is sticking thruogh my jaws. Went to Vista Wellness for massage. Laura knows just how to "fix" my problems as they come up. She made the pain totally go away. I feel so much better.

Mom and Dad came to stay with me and take me to my treatments. After treatment today the pain is back 50%. 9 treatments left after today.

The weather was so nice this evening, we sat out on the patio, finally, till it got dark.

Tuesday, August 17, 2010

Tuesday, 11 treatments to go

The day started out great today. Judy Scofield came by to visit and brought food. Wow. We had a good visit.

After this treatment, there are 10 left. Wow. Today, I did the treatment without any meds at all. Good for me. Met with Dr. Walker, the resident and Dr. McDonald. He's happy. Found out I'll get 66 gray (used to be rads)in total.
Really tired after treatment. Dozed on way home, can barely keep eyes open to write this. So tired.

Monday, 22nd. day of radiaiton

Wow, can't believe we are almost through with treatment. Treatment went well. They keep forgetting my music. I need to remind them before I get on the table.

Had a busy day actually. Went to the Look good , feel better class before treatment. The lady giving the class was not prepared. Disorganized.Wasted alot of time "getting things". She was strange too, too much collagen in her lips, too much makeup. Anyway, I made it thru makeup but missed the hat and scarf tying. Of course the thing I really wanted to know about. She said I good make an appointment with her and she would go over that with me some other day. I might. She is weird. I could do better. Wonder if I could get a job doing this art another facility.

I also would like to volunteer at the Cancer Support Community when I am able. I went to group tonight, wore vocall amplifier. Helped some. Group was okay. One of the ladies brought in hats she didn't need anymore, so I took 4. So fun.

Sunday, August 15, 2010

Sunday, August 15th

Did not sleep well last night, coughed all night. My best friend from high school, Nancy Ramsey, came by to visit. We had a good visit. Then our friends, Johnnie and Chris came over to watch the Colts game. Still talked too much again. Thoart really sore tonight. Randy gone all day working at concession stand at Lucas Oil Stadium. He's exhausted.

Cherie was bad today. She ran off from me today over to the retention pond through numerous people's back porches. Finally trapped her in some one's garage. So mad at her. She wouldn't come to me, I couldn't yell for her. She knew to come to me so she didn't. Put her in her crate for awhile. Then she climbed UP on my desk 2 times. Argh.

Saturday, August 14th

Got my wig today, it is beautiful. Going to wear it to the reunion party tongiht.

40th High School reunion party tonight. Got to see lots of old friends and catch up. Good to see Dorthy Davis. Randy was a big help and actually prepared a short speech about my situation. We danced 3 times. Nice. I helped so I didn't have to keep repeating myself.I did talk too much. Sore thoart. We got home late. Tried to rest most of the day so I could tolerate tonight. It worked.

Saturday, August 14, 2010

Friday, 19th day of radiation

Tried on wigs today, since I will need one next month. It was fun. Found a great one. Randy loved it.

Picked up the DCI tickets early and met Annie to give her the ticket. Annie is my son, Aaron's girlfriend.

Got to treatment early, so they took my early. Yeah again. Got to DCI show in time to see Aaron play the national anthem with Star United. Stayed to watch two other bands. So tired on Fridays, went home to rest then come back to watch the end of the DCI World Class compettion and see Aaron play again with Star of Indiana Alumni. they were great. Got standing ovation. Bill Cook and wife were there. Nice. I was so proud of him.

Exhausted when we got home. Busy day. Voice is so bad. Coughing is still a problem.

Thursday, 18th day of radiation

Hard time getting going today but have to as my friend, Jeanette is coming over to help me with some wedding things I need to get done.

Had a Great time with Jeanetee, she got my whole album done, all I need is to tape it all done. I would not have gotten this done without her.

Went shopping with 3 of the quartet guys for new shirts up north. Got nice shirts for all and on sale. Good day.

Treatment without difficulty. So tired tonight. Can't do a thing.

Wednesday, August 11 th

I wake up every day with terrible headache. Like a hangover but I've quit drinking. It takes so long to get feeling half way normal in the morning. It's pitiful. Swallowing is so uncomfortable, smoothies are a mainstay.

Had a massage and energy work this morning. My massage therapsit is wonderful. She seems to know what my body needs each time.

Treatment went ok today. One more down. 17th treatment today. Total 31, so 14 left. Over half way. Yeah!!

Tuesday, August 10, 2010

Monday, 15th day of radiation

Beginning 4th week of radiation. Treatment went well. I am much more calm now with the mask. Excited to go to group tonight. 2 new people came back. Talked about

Tuesday, August 10th

Tuesday, August 10th is finally here.  We finally get to meet with Dr. Rushing.  He was highly recommeneded by doctors at University of Iowa. He was a graduate of University of Illinois 1976, so we were there at the same time. Weird.

He was very nice and spent over an hour with us. He explaned all the types of cancer, especially my two. Carcinoma and sarcoma.  The pathology report came back from Dr. DeLellis. He confirmed the rare carcinosarcoma of the parathyroid. Second case reported.

He said he is the doctor I need, as it is a sarcoma. So glad; I waited. We will get another CT of chest in September due to the spots found on the last CT scan down by Dr. McDonald.  It hope it that the spots will not get larger. I'm hopeful.  

So I will not begin chemotherapy until after the wedding. Yeah! I think I'll still get a wig. This really made my day. I have been dreading  this appointment. Now I am calmer.

Had my treatment early today before the appointment with Dr. Rushing. Then had to meet with Dr. McDonald.  I am being started on Neurotin now for the cough. Also wants me to stop the Valium before radiation and try xanax. Says I am getting too much Valium by end of week. I will try.

We went to Bob Evans for brunch.  I am totally exhausted.  Could barely make it to the pharmacy to get the new med. Cherie and I  just sat on the couch.  I really wanted to go to  yoga at the support community but couldn't do it.  Too exhausted.

Sunday, August 8th

Slept in. Randy went to spend time with Jess and Brenden. I did laundry. Tired. Did very little. My best freind's daughters wedding was today in Washington DC, wish I could have gone. Sad. Lonely but Cherie helps. Too hot and humid to sit outside.

Sunday, August 8, 2010

Saturday

Mandy leaves today to go to Chicago to go to a concert and meet up with friends. Ran some errands which tired me out. Had to rest before the reunion. Randy and I attended his 40th high school reunion in Mooresville.  He had a fairly same class , 1992.  There were about 60 people in attendance. His quartet sang 3 songs. People were rude and did not listen. I was worn out by the time we got home.  Neck/head is killing me. Vicodin or IBproferin 600mg helps.  Not a bad day.

Friday,14th day of radiation

Still  having trouble with the gagging. I know it is annoying Mandy and Randy. I cannot control it, no one understands. Treatment today was at 2:30. No other patients  were there. Where is everyone?  Anyway it was nice. Session went smoothly. So nice.

Randy was gone working all day then had to change and go to sing the national anthem at the Fever game.  He loves singing. Mandy and I went to dinner at new Mexican restaurant.  Had difficulty swallowing.  Had such agreat time with my daughter this week. I miss her so much. But you cannot dwell on things like that or it overwhelms you.  I love my children and they are doing well.  I do not worry about them.Worry does no one any good and is a waste of time.

I have neglected, in my past blogs, of the increasing pain I am having in my head and neck. It is along my jaw line aound the back of head and down into cervical spine.  My skin is beginning to get red. Not sore or painful. But it reals "hot".  Am using "Jeans cream".  Cooling. 

The feeling of being tired is hard to deal with.  I just cannot do what I'm used to doing. I haven't asked for outside help yet but it is coming.

Thursday, August 5, 2010

Thursday,13th day of radiation

Better day today.  Still having the gagging feeling but the new medicine seems to work some. Treatment was hour late today. No trouble with mask today.  Met some new people just starting radiation. Helpful to talk to others. 
 Had lunch at Wanda's .   Mandy and I hanging out tonight.

Wednesday, August 4th

The sleep study went better than my last one. Slept all night I believe.Had gotten a wedge pillow to keep me elevated due to my reflux and it made sleeping so much better. Why didn't I get one earlier?

I was still tired so went back to bed when I got home. Woke up with a fever,  100.8 degrees.  Chilling and shaking etc. Still trying to hack up this mucus plug. Not really hungry. Randy pured some pineapel for me and that felt goos on my thoart.

Feel so crappy and Amanda , me and mom were supposed to go shopping. Don't; think I can do it. Fever down to 100.2 so left for appointment with Dr. Halum up in Carmel.  She was running an hour late. Argh. Terrible time with the laryngoscopy, too gaggy.  She had a few suggestions for the cough, so have 2 more prescriptions. Also wants me to see a Speech therapist for swallow/aspiration issues.

Feel blah.  Since it was so late, we stayed up north. Mom and Mandy had lunch and I had a smoothie. Pretty good. Shopped a bit a Coldwater Creek, nothing fits Mom or she doesn't like it.  Went to IU for treatment.  Did ok. Another appointment with Dr. McDonald, Mandy and Mom got to meet him. No big revelations, no pathology from out East yet.

Mom brought dinner, so had a nice meal. I have to chopped everything up with food processor. But it was still good. Tired, went to bed early.

Tuesday, 11th day of radiation

 . All day I have been haveing symptoms of choking, gagging, and trying to vomit.  Fun, huh?  I feel like a have a "mucus plug", as the ENT's call it. I know this will sound gross, but it is a build up of sinus drainage that collects in one big hunk and sides down your thoart and stays there.  I can feel it, I can feel it move.  All attempts to get it out so far are fruitless.It is nasty and disgusting, believe me.  I've been having this happen ever since my sinuis susrgery in December.

Well I couldn't stand the mask and lying flat for treatment today. Dr. McDonald had not suggestions.  So took another Valium and prayed I wouldn't choke to death. I made it through but with a lot of anxiety.

My daughter, Dr. Mandy, was here when we got home. So nice to h ave her home for awhile.She's between rotations so gets a week off.  Had to do asleep study tonight at Johnson Memorial Hospital. I hope I can make it though this ordeal.

Monday, August 2, 2010

Monday, 10th day of radiation

Woke up with terrible headache. Drug self around all morning. Throat is sore and I feel "gaggy" all day.  Had a massage and energy work done today, I feel so much better to go to radiation now.  Had to wait again for 45 min. for treatment. Took 2 Valiums.  Tolerated mask ok, worried all day I would throw up.

Went to cancer support group tonight. Have been waiting for 3 weeks to get into a group.  It was nice. Hope to be able to continue to go.  Cherie was not crated  while I went to group as a test. She did fine, only tore up a kleenex.  Proud of her.  She is a nervous Nellie in the crate.

Love her, she is so sweet and lovable.  Going to order a wig on line. Excited.  Amanda is coming home tomorrow for 4 days. Will be nice for her to go with me to treatments and hopefully meet Dr. McDonald.

Sunday, first day of August

Another  blah day, not as bad as yesterday though.  Did some laundry/ Made chili and cole slaw.  That's it for my day.  Went to a friends and family picnic, had a good time. Tiring as usual.

Saturday, July 31, 2010

Saturday, last day of July

Blah day.. Got up but couldn't do anything. No energy at all. Waited for Randy to come home to take me to the grocery store.

My best friends, Diane and Ted Crisman, surprised me today by stopping by to visit. It was so nice to see them. I appreciated it so much.

I have no more energy to even write anymore. So tomorrow is another day.

Friday, July 30, 2010

Ninth day of radiation

As tired as I have been the past two days, I had lots of energy today. Feel ditsy or spacey when driving. Scary. Radiation is getting a bit easier.  Went to well today. Chilled out with my meditation music.

 Went to try on wigs at We Care Wigs in Greenwood just in case I need one later. They were so nice. I loved the ones I tried on.  May have to get one just for bad hair days.

Still frustrated that I am still waiting on my medical oncologist  appointment. How can someone be that busy?  They say if my pathology report comes in, they will try to work me in.  I'm sure he'll say I need chemo. I'm that lucky.  However, I'm resisting chemo until after the wedding. I am NOT going to be bald with no eyebrows  and eyelashes for my daughters wedding !

Thursday, July 29, 2010

Eighth day of Radiation

Not a bad day.  First day I think I haven't cried over something. Energy level is fair.   Radiation went okay.  Saw resident today as I am having some diffficulty swallowing, gave me a liquid medication to take before I eat.  Seemed to work. Also started the grind meat, much easier.

 Ran into another friend at the Cancer Center.  Went to the Cancer Support Community for Relaxation and Visualization group. I might be geting the hang of it.

Wednesday, July 28, 2010

Seventh day of Radiation

I wish I could type as slow as I feel today. Woke up tired. Did close to nothing all day.  Just no energy.   Had a massage this morning, helped alot. Relaxed me.  Radiation went very fast today. In and out in 15 minutes. I've counted the seconds the beam is on 11 to 18 seconds,six times.  My thoart is begining to get sore and having difficulty swallowing.

Web surfed several cancer sites... the best was crazysexycancer.com.  The book is also good, I'm reading it now.  I feel everyone with cancer or is concerned about their loved one should be well read  on the subject.

Seventh day of Radiation

I wish i could type as slow as I have been all day.  I got up exhausted.  Been tired all day. Did close to  nothing all day.  Radiation went much better today. They were on time. Out in 15 minutes. My thoart is beginning to get sore. Also hard to swallow. Didn't think this woudl happen so soon. Web searched a few cancer sites... the best is crazysexycancer.com

Tuesday, July 27, 2010

Sixth day of Radiation

Well, another day down.  Treatment was 45 min. late. Only took one valium, should have two.  Got the mask on the first time. Still terrible.  Met with Dr. McDonald afterwards.  Voice continues to be hoarse. Cough is diminishing but still a bother. 

Went to Cancer Support Comunity again with Randy this time.  Had orientation meeting.  He's agreed to go to a support group.  Hurried home to Cherie. She was still in her crate. Thank goodness. 

Tiring day.

Monday, July 26, 2010

Second week of Radiation (day 5)

This week, I changed my time to 3:30 PM.  Had a busy productive day at home before I went to treatment. Took my meds on time but treatments were running late.  Thought this might happen. Anyway, after 45 minutes, I took another Valium , so I was pretty mellow. they were able to secure the mask the first try.  Still scary. Takes alot of mental concentration to not freak out.  After treatment, I was pretty sleepy. Sort of done for the day. Me and Cherie are chilling on the couch.

Saturday, July 24, 2010

A day off

Lazy day. Slept in, nice.  Spent morning with Randy, haven't really been with him much this week. He changes shifts tomorrow to days, which will be nice.  Lady from Basenji rescue is coming today to do a home visit.  Going to Bloomington afterwards with Cherie.  Another really hot day but at least the wind is blowing. Still too hot to be outdoors.  Voice is still gravelly. May stay this way from now on I  guess.

Friday, July 23, 2010

Fourth day of radiation

As Randy worked over last night, is mother went with me today.  Two trys again.  The first time they try to latch the mask in case, I freak out.  I just cannot stand it.  No one knows now awful it feels. It is suffocating and it hurts.  It is very tight, it is leaving mesh marks on my face, that do fade within two hours.  I am gettin a rub burn under my chin that remains.

I changed my treatment time to 3:30 PM next week, as Randy's work hours changed, so he can go with me. 

Went to visit my friend, Laura, today. Took Cherie with me.  So tired when we got back. Slept for an hour. I have been doing alot of reading.  Picked up quite a few brochures at the Cancer Support Community.  I hope to attend a few classes there next week.

Thursday, July 22, 2010

Third day of Radiation

 Well, it only took 2 trys today to get the mask on.  You will neer know how horrible it feels.  It feels like a 50# towel strapped to your face and chest. You can't move. You can't get it off.  The Valium helps some. Woozy after, needed help to walk.

Forgot to mention, I ran into a girl from work, at the cancer center yesterday.  She looks good. Stated she really like Dr. Rushing. I can't with to have my appointment with him next month.  Can't believe it takes so long to get into these doctors. Are there taht many people with cancer? Guess so.

Went to the Cancer Support Community today. Had interview and tour. Stayed for a relaxation class.  It was good.  Very nice. Wish it wasn't so far away. I would enjoy going to classes there. 

The dog got out of her cage today. Wonder how?  Nothing happened to the house. All was fine.
One more day this week, thanks goodness.

Wednesday, July 21, 2010

Second day of radiation

Continue to have trouble tolerating the mask. Had to quit and go home and come back later in the morning.  Dr. gave me Valium to calm me down. It least I was able to get thru the treatment.  Met with Dr. McDonald, still not path report from Rhode Island. He stated, "it's deciding if you have a rare cancer or a VERY rare cancer." yeah for me :(   Randy was able to be with me all morning. 

My perfect little dog was so bad today.  He put her on back porch and she tore the screen totally off the door. OMG. Can't believe it !  I can't trust her now.  Went out and got her a crate for when we have to be gone, afraid she will tear other stuff up.  I still over her though.

Hoping tomorrow goes better.

Tuesday, July 20, 2010

First day of radiation

What a disaster.  I decided I could do this on my own.  I was wrong. I had a terrible time adjusting to the mask. It was soooo tight. I couldn't breath. I had a panic attack. Crying. Took 4 tries to finally be able to tolerate the extended time it took today. The attendants were very helpful and patient with me. They were able to cut out a section of the neck so I could breathe.  It is really tight on your face and neck. I had to really focus on breathing and relaxing to get through this. Dr. McDonald stopped in to help, asked about the pathology report, but he did not know if it was recedived yet. Maybe tomorrow.

I came straight home. So upset. Randy waited for me before he left for his new job. Nice.  Have a migraine. Went to bed and napped for 2 hours. Felt better. I really do feel like I am in this by myself. I'm not sure what I need but I need something.

Monday, July 19, 2010

Recovery

I did pretty well aqt home. Only needed occassional Ibprofens for pain.  Did have trouble turning in bed or lifting my head off pillow. Took a week before I could do it without using my hands to hold my head.  A week after surgery I saw Dr. Moore to get my stitches out. No problem. 

The big C. Yes, the tumor was malignant. I knew it was. I fort unately was able to see Dr. McDonald that day also for a consult.  He is recommending radiation. Unsure about chemotherapy, that is up to the medical oncologist.Whenever that is. They are discussing me at the tumor board today also. Interesting.

My pathology is this...it was a rare solid mass carcinosarcoma. Very very rare. Most parathyroid tumors are beingn.  The only other parathyroid cancer was noted  in 2002.  My tissue samples were sent to Rhode Island  to Dr. Ronald Dellellis (sp?) for further study.  He is a parathyroid specialist. 

I followed up with Dr. McDonald 2 weeks ago. CT's of my thoart to pelvis were done.  My mask was made, Wierd. Randy took a picture of me in it. Ask him to see it.  My radiation will begin on July 20th.  I am so upset that I have to wait 5 weeks to start this treatment. They say they want my thoart to heal more beofre being bombarded with radiation.  

I'm frustrated but what can I do. It pushes me so close to Sarah's wedding, it upsets me so much. No one understands. I don't want to look bad, I'd like to enjoy the wedding.  I don't want to ruin her wedding.  I made her promise to have the wedding whether I was there or not. Sarah agreed tearfully. I refuse to have chemotherapy until after the wedding. Together they would be a double whammy and I'd look terrible and bald!  I won't have it.

I'm trying to be strong and not cry but it is so hard at night sometimes. No one understands. I cannot talk to anyone. No one really wants to hear me. It's too upsetting for them. Tried to get into a support group but I have to be "interviewed" first. What a crock. I need support. Will try to go through the IU Simon Cancer Center tomorrow. 

Six days ago, I adopted the sweetest little dog. She is a Basenji mix, an African breed.  Her name is Cherie.  She is a caramel color with white markings.  Her eyes are golden.  She is very affectionate, rarely barks.  The Basenji purebreeds yodel, no bark. She is 2 years old and house trainied.  We both love her.  She is to be my cancer companion dog.  She will be perfect.

Tomorrow my radiation starts. I will try to document daily the process and side effects.  Good Luck, Valerie.

Sunday, July 18, 2010

Catching up

I elected to have my second vocal cord injection 2 days after Xmas. Along with that I also had a septoplasty with turbinette reduction.  Meaning  he cut out the elarged tissue in my nose so I could breathe better.  My nose was almost completely cosed.  Dr. K would ask"How can you breathe?"  Of course, doctors rarely tell you the after effects of such surgeries. 

It was TERRIBLE.  The vocal injection ws no problem but the nose was so painful. It was worse the next day when he pulled out all the packing.  OMG!!.  Never never would I do this  if I'd known how awful it was.  I felt on the verge of a mirgarine for weeks.

Let me explain the vocal cord injection, also called medialization.  They inject a collagen like substance into the flaccid vocal cord to "plump" it up so the functioning vocal cord has something to close up to so you can speak.  The paralyzed vocal cord is slack. Your vocal cords open and close when you speak. I only have one working vocal cord .  I ws trying very hard to talk now causing mucel tensin dysphonia. This means I was trying to use all my neck muscles to talk.

My voice did not return as fast as with my first injection.  It was very frustrating.  Followup  with Dr. K in January now revealed an arthynoid dislocation ( this is the cartialge that holds the vocal cord).  He referred me to Dr.  Stacey Halum at IU. In April, I saw  Dr. Halum  who wanted better "pictures" of my head and neck, so MRI and CT were ordered.

Randy's dad became very ill with a return of his pancreatic cancer.  He passed on Easter, April 9th.  I was admitted to the hospital for a groin abcess on the 11th.  MRSA+.  Released the day before his funeral.  Very painful and uncomfortable.  What else is going to happen?

I was so frustrated with my voice quality, I contacted Cleveland Clinic for a second opinion. Randy and I went up there in May.  I saw Dr. Milstien, phD in speech pathology and Dr. Cabrera, ENT.  her resident flet my neck and found a lump which was confirmed  by the MRI/CT. Dr. Cabrera said the vocal issue ws not important as was this mass in my neck. I could feel the lump in the right side of my neck.  She did a needle biopsy right then.  I was upset and anxious. Very upset.

I returned to Dr. Halum, who confirmed the mass and referred me to a head and neck cancer surgeon for excison. She also ordered another needle biopsy  and Ultrasound.  This biopsy was very very painful. Took 10 samples. So terrible.  Why  can't they put a person out for these kind of procedures?  They'd think twice about it if they actually had this done to them so they knew how painful it is. Bet they'd order some anestheisa then.  So frustrating.

Saw Dr. Micheal Moore before Memorial Day.  He believes it is cancerous and needs to be removed as soon as possible.  I was able to attend my daughter's  bridal shower Memorial weekend.  Had a nice time reconnecting with the Steele side of the family. Surgery scheduled for June 9th. This was rescheduled twice. My surgery was finally performed on June 15, 2010.

Randy stayed with with my all 3 days at IU. I had a private room due to the past MRSA dx. I ended up having a central neck dissection due to large size of my tumor.  It was a solid mass tumor, golf ball size. I drain was placed in my neck. I ws in recovery for 6 hours waiting for a room. Awful. Mom and Dad were so upset. I felt bad they had been there all day and were exhausted.  Having Randy with me was so helpful.
Most of the nurses were nice. You really can't sleep in a hospital. They are always waking you up for vitals, meds, etc.   The removal of the drain ws quite painful, very wierd feeling but painful. Amazing how long it was, all packed in my neck. Ugh.  Glad to go home. 

Saturday, July 17, 2010

History continued

The end of July I went to a Creative Memories  convention in Chicago.  Had a good time. Eventough I could barely whisper.  Randy was bored but a trooper.  I wanted to visit the Baha'i House of worship to pray about my surgery and to feel some comfort within its walls.  Randy had never been there. It was as I remembered. So beautiful, so peaceful.   Got home real late . Amanda got home after us. Long day, exhausted. Glad she is going to be here for my surgery.

Randy and I have had a rough 2 years. We were married February 16, 2008, after 6 years of dating. In the fall of 2008, he was diagnosed with prostate cancer. Had had proton radiation therapy January  to March of 2009. I began losing my voice at end of March 2009.

I had my total thyroidectomy on August 2009.  I was only in hospital overnight. The dressing/splint was very uncomfortable .I could not sit up, kept falling backwards.  Anyway, since I slept all day. I was awake all night. Randy did not stay with me. I kept calling him to come back but he had turned his phone off. What if the hosptial needed him?! So mad.   When I got to go home it was raining so hard. Could barely see to drive.  My folks had stayed overight at my house. They left after I got home  but they had trouble getting home to Bloomington. There was flooding in Martinsville. 

Slept for three nights on the couch, as I couldn't lay down. Afraid I would choke to death. The pain is manageable.  Dr. Krowiak says he got all the tumor and that it  was not touching the right recurrent laryngeal nerve at all, as suspected.  So now what?

Followup  with Dr. K... tumor was benign. Thank you , God.  He is still perplexed about the paralysis.  A vocal cord injection was planned for August 27th.  Done as an outpatient. Three days of vocal rest. When I could talk, it was raspy. Went back to work Labor day weekend. I can talk with some volume now.  My voice got stronger every day.

Two weeks before Xmas, my voice started to fade. This first injection was only to last 3 months, more if I was lucky.  I wasn't. I went to my appointment with Dr. K with my mind made up to ask for the permanent implant.  However, he talked me into a longer lasting injection. Susposed to last 2 years.

Saturday, July 10, 2010

History

In March 2009, I began to have hoarseness after talking all day at work. I'd be better in the morning. After several weeks, the hoarseness did not get better after a night's rest. By the end of the week, I now was soft spoken and could barely whisper.


Continuing on in my "not wanting to go to the doctor" vein, I finally went to my PCP after suffering a debilitating migraine. Migraines send me to the hospital ED for a morphine "cocktail". Telling my doctor about my migraine and my hoarseness. He asked "has anyone looked down your throat?" "No", I replied. He immediately got me an appointment with an ENT the next day. Things moved quickly from then on.

The ENT did a laryngeal scope, not fun. He stated that my right vocal cord was not moving. It was paralyzed for some reason. He felt my neck and said ,"You have a lump in your thyroid". This could be pressing on the nerve causing the paralysis. Seemed reasonable. I am very practical and like things to make sense.

Because of my poor speech quality and increasing fatigue. I took FMLA from work. I work as a physical therapist , specializing in lymphedema and wound care at Columbus Regional Hospital. I love my job and being off work is my hardest struggle. I worried about my patients, leaving the other therapists in the lurch, etc.

He immediately ordered a CT scan of the mass, a fine needle biopsy (called an FNA), and an MRI. All these were done in the next 3 days. I am glad I had my daughter, Amanda with me for the FNA. It hurt like heck. I do not see why they do not knock you out for procedures like this.

I returned the the ENT on July 2, 2009. I was told the mass was probably cancer and needed to be removed ASAP. Surgery was scheduled for 2 weeks later.

After this apportionment , my husband, Randy and I decided we did not care for this ENT too well. and decided to get a second opinion. I call ed my nurse friend , Jo and she recommended Dr. Edward Krowiak's name. As luck would have it, I was able to see him the next week.

I loved Dr. Krowiak right away. He was handsome, personable and caring. A University of Illinois grad like me. He did the now routine laryngoscopy. Yes, there was a mass, yes it needed to come out. However, he explained that the tumor could definitely be pressing on the nerve and he proceeded to explain how he would spend as much time as he needed to protect the nerve from further damage. And that he would leave my 2 paratrhyroids intact if at all possible . You need the parathyroids for calcium control in your body. Surgery was scheduled for August 3, 2009.