6 month survivor!

I have been meaning to blog for the past week but life has just gotten in the way! Since I last blogged Mom has become a 6 month survivor of Brain Cancer. If you would have said that a few months back no one would have believed it...including all of her Dr.'s. I am amazed and so thankful for every morning I wake up and she is still here!

Mom has been feeling really good lately. She is able to walk around without her walker and we have been taking walks outside almost everyday. She is able to do little things around the house and she is so grateful for that. She is still very tired and takes naps several times a day but she is able to stay awake for a few hours at a time now. I have been able to have conversations with her...which is what I have missed the most. They usually don't last long but she is able to give me some of her wisdom which at times I so desperately need.

The only medication she is on right now is Kepra for seizures. The Dr said she would probably be on this for the rest of her life. The tumor she had causes seizures. Even though she has not had on since the first day in the hospital he still thinks it would be much better for her to stay on this med. She still takes chemo 5 days a month and when she does she gets really sick. It lasts about 7-10 days and then she feels better. Her headaches have been gone for about a week now so she was able to stop taking the oxy-codon and Tylenol #3 which was reeking havoc on her body. She feels much better when she doesn't take them. We have been able to control any little aches and pains she is having with plain old Motrin. She has been getting her appetite back but is having trouble eating "Dad's"cooking.

Mom has always been the cook in the house so this is something new to both of them. Mom is what I consider a "farm cook" not a lot of planning goes into the meals...they get meat out of the freezer in the morning and cook it for dinner. Open a can of vegetables, add a potato and you are good to go. No need for salt & pepper...or any seasoning for that matter. Meals needed to be prepared quick so you could get back out to the fields to work. When I met my husband Dan he had never had a TV dinner. He thought it was great that you could take an entire meal out of the freezer and cook it in 3 minutes. He didn't know what canned tuna or hamburger helper was! I introduced him to all that! Dan grew up with everything homemade...I always thought you bought pie crusts...I never knew you could actually make them at home! I realized that if i didn't want to starve Dan I better learn to cook. I know I have not mentioned this before but I have a great relationship with my in-laws. I love them very much! Dan's mom taught me how to cook. Through out the years she would teach me new things and help me through recipes over the phone. Once she helped me make 20 dozen cut out Christmas cookies for work FROM SCRATCH! Because of her I love to cook...not so much to bake but to cook. She did teach me baking essentials and I can whip out a pretty mean pie if I have to. When I am at my parents I cook dinner. I don't mind doing it...if Dan and the kids want to eat they have to come to Mom's but that OK too. Lately Dad has been hanging around the kitchen asking questions while I cook. At first I was annoyed because I thought he was questioning what I was doing but I quickly realized he wanted me to teach him how to cook. This has been a lot of fun. I bring my equipment with me because they have a knife and a pancake flipper..that's about it. Sometimes I send him to the store to buy things he has never heard of...that's always entertaining. This has been a good experience for the both of us.

The kids are doing great. Hannah brought home her order form for her cap & gown. There is something so final about ordering your child's graduation gown! I can not believe how fast this time has gone by. Every event she attends for school I think...this is the last time she will do this in high school! Annie ( Dan's Mom ) has been my stand-in at some of the events I couldn't attend. Did I mention how much I love my in-laws :) Annette enjoys going and spending time with the kids and the kids think it neat that she is there...and usually they go out for treats when there done. Annie has really been my savior with the kids through all this. She does anything I ask even if it means rearranging her schedule to accommodate us. I really don't know what I would do with out her! Hayden is really concentrating on his music right now. He has his first competition in December and he is very serious about it. Cross Country is done for both of them so now they can concentrate on winter road races and schoolwork...not in that order!

she made it to 61!

First let me explain the picture. I have always felt very blessed with the friends I have in my life. I think of some of them as family more than just friends. I have also felt bless with the relationship I have with my sister Jeni. She is now and has always been my best friend. Together we have shared loves, losses, laughter and heartbreak and through it all we have always been there for each other. I was at Mom's today looking for some pictures...for several reasons....one being Hannah is a senior this year and I promised to make her the most embarrassing photo memory board possible for her graduation party......I found some great additions to the board while going through Mom's pictures. I always knew Mom & Dad had a group of close friends and until I found a certain box of pictures I didn't realize the memories they have made with these friends. There is an entire box dedicated to photo's of their friends. Trips they have taken together, camping, parties, outings and things I am sure their friends would appreciate me not mentioning. I have known some of their friends my entire life and some of them I have just recently had the pleasure of getting to know. Mom is a very lucky woman to have had so much love and so many memories with friends who truly love her. She also has a very special relationship with her brother Pete. I am sure I mimic my relationship with Jeni to how theirs has been their entire lives. The picture above was taken on one of the trips she and dad took with their friends.

Mom has been very sick the past few weeks. After she finished her treatments we all thought it was downhill from there. Boy were we wrong! It wasn't until the treatments ended that she got really sick. So sick that she didn't get out of bed for several days. Some days she didn't even wake up. We had to keep checking on her to make sure she was OK. We went to see Dr. Potts because Mom was in severe pain she had headaches so bad they were making her sick and every doctor we have said there is no reason for her to suffer through pain. Dr. Potts gave her Tylenol 3 and Lasic because her feet and legs were so swollen the skin was splitting open. My brother Steve decided to get us together for dinner at Moms a few Sundays ago. This was the fourth day in a row that Mom was in bed. Jeni and I decided to help her get up and get her to the kitchen so she could eat with us. I think this is the first time the boys realized how sick she actually was. After we ate Mom wanted to go right back to bed...that used up all the energy she had. The next day she had to go for a blood test and an MRI. The Dr called shortly after the test and told us she had to go to the hospital for a blood transfusion. The next day she got 2 bags of blood. When I asked the nurse about how long until she feels better she said it could take days. This was not the news we were hoping for. Mom slept the entire time and all the was home. I was starting to get worried because she was loosing several days at a time. She didn't remember the boys coming over or being at the hospital. The next day she was doing a little better. She was out of bed and walking around with her walker. We went to see Dr Potts again and he was pleased with how she looked. He said he thought the transfusion helped and that she was doing well. He had her MRI results which he went over with us. He read the report and then dummed it down for us. The space where the tumor was removed is filled in with other stuff ( perfectly normal ) the good news is the space is not filled with swelling, infection, fluid or TUMOR! This was very exciting news...this means the chemo and radiation worked! Dr gave her a stronger prescription for pain.....she was still having headaches and took her off her Ameril ( for sugar) because her sugar has been around 120 everyday. Yesterday we went to see Dr Chuck (neurosurgeon) He went over the MRI with us and we got to see the scans. He was very pleased and said this was the outcome we were hoping for. He showed us where the tumor used to be and IT IS GONE! This does not mean she is cancer free. The cancer cells will always be in her brain waiting to cluster and multiply. She will be on a very strong dosage of Temador (chemo) 5 days a month for the next several months. When we were leaving Chucks office he said follow up with him in 6 months! No Dr has ever scheduled an appointment for Mom 6 months out!

Mom started her Temidor last night and got really sick shortly after taking it. We forgot to give her the compazine ( nausea med ) first. This morning she told me that she is frustrated because she is throwing up and doesn't have any energy. Dad said that he thought something wasn't right because she treatments have been over for several weeks and she wasn't back to normal. I said Dad this is normal. This may be the best we get but aren't we thankful that we have this? Mom said your right I am so thankful that I am still here. I said when you were first diagnosed no one thought you would still be alive today and look at you now 5 months later and your still here and your tumor is gone. Mom turns 61 on Friday. This will be her best birthday yet!

the word of the week is Jesus

Oh boy where do I begin.....Mom's tumor is in the place in the brain that controls her speech and memory. I you have had the chance to communicate with her since her tumor you understand what I mean. For those of you who have not had the opportunity let me explain. Memory wise she knows who we are but she can't remember when the last time she ate or what medication she has taken. As for the speech, she has to think about the words she wants to use before she speaks. She also inserts words in sentences where they don't belong or make sense in the sentence. She gets a word stuck in her head and uses that word literally 100's of times a day. So far the words have been velcro, nativity scene & cookie. The word of the week is Jesus. This is a phone conversation I had with Mom recently.

Me - Hi Mom what are you doing
Mom - Watching Jesus
Me - What is Jesus doing?
Mom - Nothing its just a rerun
* she was watching tv
Me - What is Dad doing?
Mom - He's outside riding the Jesus around in circles
* he was cutting the grass on his riding mower
Me - Is Jesus your new word?
Mom - Did I say Jesus?
Me - Yes Mom you said it several times
Mom - Jesus be quiet..do you want to go in the bedroom
* the dog was barking and the dog's name is Slinky not Jesus
Me - Mom you just called the dog Jesus
Mom - I did? I am really tired I am going to sleep now.
Me - That's a good idea I will talk to you tomorrow.

Every Wednesday Jeni and I go to Mom's after work and let Dad get out of the house for a while. Yesterday we decided to get Mom's Halloween decorations out and make her house festive. As we were pulling out the totes ( she must have had 10 totes of Halloween) I asked Mom what totes were for home and what ones were for your classroom? She said the totes on the floor by Jesus (Me) are the ones for the house. The ones by Mary (Jeni) are for school. I said Mom do you realize you just called me and Jeni Jesus and Mary? We were laughing so hard we were crying! So far we have been able to figure out what the Jesus means most of the time but we are stuck on what the "navy blue Jesus is that Dad left on". As I was telling Dan about this he said " I can't wait until the F word is the word of the week".

Mom had a few Dr appointments the last two weeks. Dr Potts ( Family Dr ) gave us a prescription for a wheelchair and walker. We got the wheelchair to keep in the car for outings and Jeni's sister in law had a very nice walker she is letting us use. Dr also gave her a prescription for Ameral. This is for sugar. We have been testing her sugar using Jeni's monitor because Jeni is a diabetic and has a spare. The Decadron ( steroid ) Mom is on is known to cause diabetes. Mom has been having trouble seeing and shaking ( which we thought was from the seizures but turned out to be from sugar ) her sugar has been so high that sometimes it doesn't even register on the machine. It has to be over 500 for it not to register. Normal levels are 70 - 100. Her feet are so swollen too. I can't even describe how big they are. The skin is pulled so tight it looks like its going to pop. She can't wear any shoes that she has in her closet. We are getting by barefoot or with slippers. The Dr looked at them Tuesday and said it was normal because of all the medication she is on. If they don't go down in a few days I am going to have to call him back. She is starting her second round of chemo beginning in October. This round is 5 days on 24 days off for 6 months. This an even higher dose that she was on before. In about a month the Dr will order and MRI and we will be able to see what the first round of chemo and radiation did to the tumor.

Hayden turned 13 last week. I now have two teenagers in the house. He also started running again. Cross country meets keep us pretty busy during the weekends. Hannah takes her CNA test next month. She wont be able to be an official CNA until she turns 18 but she will begin her first year of college with college credits.

Homecoming, Halloween, Thanksgiving are events we thought we would be celebrating without Mom this year. God sure works in mysterious ways. I will never figure it out but I am very thankful!

Finished with radiation!

Yesterday was Mom's last radiation treatment. Jeni & I wanted to surprise her and celebrate the occasion so we bought balloons and flowers and waited in the lobby for her to come out. Shortly after we arrived one of our favorite nurses Dot came out to see us and let us know "the radiation machine was broke " Now I am pretty sure that is one of the last things you want to hear as you are laying on the table awaiting the beams to penetrate your head. Dot said that the machine was warming up...which was progress from earlier but the technician was coming out to service it. The were rescheduling everyone for later that day but while Mom was there they wanted her to see the Dr one last time. Joanie, our other favorite nurse, came into the lobby and told us to come in the back and surprise her back there so everyone could see. We walked into her room and she was speechless. I think it took her a while to process what was going on. She was not expecting either one of us to be there and with the flowers and balloons she probably thought she won the Publishers Clearing House. After she processed what was happening the tears started flowing...even the staff got teary eyed! The Dr. came in and told us to make sure we take pictures and video of this monumental occasion. Joanie took a video and did a splendid narration of it and she also took pictures. I am so glad the Dr suggested it and that I always have my camera handy! ( That is thanks to a good friend's Mother Carol Buza...she was always taking pictures of us and when we would complain about it she would say "now girls in 25 years you will be glad we did this" ) You know what Carol, 25 years later I am so glad we did it and I am also so glad you taught me the value of a photo opportunity! After our little celebration we went through Mom's discharge instructions. She is weaning off the steroid for the next four weeks and having her vitamin D checked again. They also said that the last few radiation treatments are the strongest and she will have side effects from them for about the next 10 days. For about the last 2 weeks I have noticed that things are becoming more difficult for her. She is having trouble seeing, walking, she shakes a lot and can't climb stairs and has to have help to stand from a sitting position. I called Dr Potts last week and told him my concerns and that we have been testing her sugar and it has been between 360 - 480 everyday. He wanted to see her so I scheduled an appointment for today.



I have to have a difficult conversation with Dad today. Jeni and I both agree that it would be easier for all of us if we got a wheelchair for Mom. I really don't know how Dad will feel about it. Yesterday to conclude our celebration we went out for breakfast. When it was time to leave Mom couldn't stand up. Dad tried to help her but it was like her legs would not work so I took her under one arm and he took her under the other and got her almost standing but she could not support herself so we had to lower her down to the floor. Jeni supported her feet and Dad and I each took her under the arm and together we got her up. Mom felt terrible because she thought she embarrassed us. I walked her outside and told her nothing she did would ever embarrass us and we will always be there to help her! All day I found myself wondering what would have happened if it were just her and Dad at the restaurant.......Dad is strong but it took 3 of us to get her up. I want them to be able to leave the house and not have to worry about Mom falling. Apparently Jeni was thinking about it too and she called me at lunch time and we were both thinking the same thing. I am going to talk to Dad in a few hours...Wish me luck!



The kids had their first day of school yesterday. They both came home happy and neither had homework.....that's a good start to the school year. Hayden started cross country practice yesterday and his leg hurt really bad. Coach and Dr suggested he only run every other day. This is very hard for Hayden. He wants to run so badly but physically can't. Hannah had her last first day of school yesterday! Her next first day will be of college! This time next year I will be the Mother of a college student! OMG!

she still has all her hair!

Today is Dr day at the radiology. Actually today is the LAST Dr day for Mom. Although she has 3 more treatments she will not see the Dr weekly anymore. His plan is to see her in a few months and do another CT scan. Next week when she finishes her radiation she also finishes her chemo. She begins weaning off her steroid and will be completely off of it in about 30 days. After that she will be off both chemo and radiation for about a month. She will then begin a once a month chemo treatment for several months. It seems as though we will have a few month waiting period until we know if the chemo and radiation did their job.

Mom has become weaker over the last several days. The Dr said this is perfectly normal and told us to help her when she is walking and climbing. She also does not sleep. Mom was never a good sleeper but now she only sleeps 3 hours a night at the most. When she is not sleeping she is cleaning, organizing and re-arranging everything in her house. Every morning Dad wakes up to find closets cleaned, cupboards emptied and rooms re-arranged. She also spends time on the computer....perhaps some of you have received an e-mail or two. She has also become very impatient which is comical now but the first few day of it Dad, Jeni and I were running our asses off. The other morning she called me at 6am to have me come down and take the plants outside so she could water them "right now" she said I could come down in my pajamas if I wanted to. I told her I would come down and do it later in the day and she was not very pleased with me...now we all know that when she asks us to do something we do it now. We don't ask we just do it :)

Lately Mom has been coming up with all these crazy ideas....hence the above photo. She had Jeni order bald caps, plastic animal noses and crazy colored sun visor hats off the Internet for all the grand kids. She wants to get them all together for a picture wearing all that stuff. You may be asking yourself why?!? Well we don't know all we know is that it is something she wants and she wants it now. I told her that if the kids had to wear the bald caps she and Dad had to do it first!

It looks like Mom is going to be one that doesn't loose her hair. Its a good thing she didn't let Suzy shave it off when she wanted to! Speaking of Suzy....for those of you who know her please keep her in your prayers. Two weeks ago she had surgery to help with her gurd ( acid reflux ) there were complications and she is still in ICU in Flint. The surgery was supposed to be relatively simple with a one night stay at the hospital. I don't have to many more details her daughter Ali is in town and is keeping Mom and Dad informed. It sounds like she will be moved out of the ICU with in the next few days.

Mom and Dad are going camping this weekend. Mom is severely over packing and Dad is just shaking his head and putting everything she wants into the camper. I am hoping they will both be able to relax and enjoy so time with some of their very best friends.

My family is getting back to normal. Hayden gets his cast off tomorrow. To say that he is excited is a gross understatement. Hannah had her senior pictures taken yesterday, She had a great time and the pictures are beautiful I don't know how we are going to choose. School starts next week. It will be Hannah's last year in high school and Hayden will begin the 7th grade. Both will be running cross country this year actually Hannah has already had two meets. Hopefully September will be a nice calm month...................Famous last words.

Karma bit me in the ass

I promised a blog about how Mom was becoming my Grandma but lately I have been to sad to write something funny. As I was compiling my list of how Bev was Betty all I could think of was how much I miss my Grandma. Instead of finding humor in the Bev to Betty transformation all I found was sadness. I truly believe that Grandma still communicates to me...I am not crazy...I don't hear voices so don't be calling Jeni to see if there any open beds at Mental Health. But I know that Grandma has guided me through the last few years and today I am certain she put humor back into my life.
I come from a long line people with the klutz gene in their DNA. Today as Mom was describing to me how she fell when she was outside and smashed the freshly picked tomatoes that were in her pocket all I could think of was Grandma falling on her way home from Kroger...stopping traffic so she could gather her groceries and eyeglasses. Now I understand both of the above mentioned falls were very serious but believe me we are so accustomed to falling that it has become very comical..2 broken legs myself from falling and I still laugh about having the klutz gene.
Today was a busy day, two Dr appointments with Mom, Hannah leaving for cross country camp and haircuts for Hayden and I, my mind was always on something...as I pulled into Mom's second Dr appointment I realized that I was at the wrong Dr's office.....I was at the Kids Dr! Now mind you I had no kids with me...I swear I could hear Grandma laughing at me as I raced across town to the right Dr's office. After the Dr appointment I went to Kroger to get Hannah's required camp food from the list she gave me an hour before.... as I was checking out the cashier was looking at me like I had grown another nose and said "um hun I don't think this card is going to work" as she handed me back my Blue Cross Card. I said if you only knew how much I have used that card lately you would understand why its the first card I pull out of my wallet! At this point I have no choice but to laugh at myself all the way out to the car. I know Grandma is thinking....So you think Bev is becoming me, well honey you better take a look in the mirror!

Mom is doing well. She still has all her hair and she is even growing hair back where they shaved it for her surgery. Every time we see a Dr they tell her she is going to loose her hair. She told me today that she wishes she would just start loosing it so she wouldn't have to shave her legs. I told her I would get Suzy to come over and give her a wax job. I think she is weaker than she was, she has trouble climbing stairs ( see the above mentioned fall ) and sometimes even standing up is difficult. I also noticed she is shaking more than before. During our last Neurologist visit the Dr said the tremors were from the brain tumor and the seizure medication would keep them minimal. I called the Dr today to see if they should up her dosage...he is going to call me back. The steroid is helping with her appetite and making her face really round. Dan said "your Mom looks cute with her round face" and I agree she does look cute! Dr Littles sent Mom for a blood test to check her vitamin D because she was not sleeping well. The results came back as deficient so she is on a vitamin D 500000 once a week to be eaten with a fatty meal. She takes that fatty meal very seriously and plans for it all week. This week it is going to be prim rib and mashed potatoes thanks to Charlene.
Tuesday we went to the Social Security office and it looks like Mom will begin receiving Social Security Disability real soon. We were told that as long as one of her Dr's confirms her diagnosis she will be approved. They also said because she is stage 4 the process only takes about a week instead of several months. I guess that one benefit of stage 4 brain cancer.is that you move to the front of the line at the Social Security Office.
We got Hannah's results back last Thursday. She has a benign breast parenchyma with sclerosing adenosis. Yah thats what I thought too:) The Dr dumbed it down for us.....a normal substance growing between the skin and breast tissue. She suggests to leave it in and have a re-check in 3months for further growth. Hayden had an appointment for his leg and they took his cast off. He was so happy until the Dr came in and told him it wasn't healed and they were going to put another on on for 3 more weeks. He was so bummed. I feel so bad for him he will still have his cast on for their first cross country meet. I am humbled by all the people that care about my children. There is not a single day that goes by that someone isn't asking about them. I am truly blessed to have such wonderful people in my life.
Oh yah I almost forgot...Dad was standing on the tire of his truck and was reaching into the bed to get a bag when his foot slipped off the tire and he fell onto the side of the truck and broke his ribs. He is in a lot of pain and is moving very slowly. Never fear Dan and Jay are taking care of things around their house until Dad heals. They are lucky to have such great son-in-laws and Jeni and I are lucky to have such great husbands.

she always wanted to be a blonde

Wednesday is Dr. day at Jeppesen Radiology that means every Wednesday after your treatment you see Dr. Littles. Today he told Mom that she was going to start loosing her hair really soon. Her reply was "oh well that doesn't bother me....it will grow back" Jeneva thought she would help Grandma with a new hairstyle. Little did we know Mom always wanted long luxurious blonde hair.

This week Mom has discovered the funny side of cancer. One day when she went for her treatment they told her to take off her shirt and bra for her treatment...her response was OK but I'm not sure why you need me to do that when I am getting the radiation on my head. The tech apologized to her over and over all the time Mom was cracking up. Then when they put the mask on her nose got caught in the mask and it was pushed up pig style, she laid on the table laughing so hard she was crying. She was laughing so hard she couldn't talk and the poor tech didn't know what was wrong finally when she could talk she told him her nose was stuck and they had a good laugh together. Later in the week she and Dad went to the movie and saw Grown-ups. She is still talking about the guy with the KFC bucket on his head and laughs every time she talks about it. Comedy has always been my coping mechanism and now it seems that it is Mom's too. She thinks Jeni and I are hilarious!

Mom is feeling pretty good. So far she really isn't having any of the side effects from the chemo and radiation that we were so afraid of. We all know that she has a long ways to go but we are really enjoying our times together while she is feeling good. Today she got a prescription for thrush. She has thrush but none of the symptoms so hopefully this antibiotic will kick in before her mouth gets sore.

Tomorrow Hannah has her biopsy. She is scheduled at noon and it should take about 2 hours. She is a little nervous tonight and so is Hayden. He wanted me to assure him that Hannah's surgery wasn't dangerous to her and that nothing would happen to her while she was in surgery. Something good has come out of all of the turmoil in our lives and its that my kids have stopped bickering and have become very good friends. Some nights long after we have gone to bed I can hear them upstairs laughing & talking. What I wouldn't give to be a fly on the wall let me tell you. I can only hope that they will grow up to be as close as me and my sister and brothers.

Thanks again to all Mom's friends for the continuous phone calls, cards, visits & e-mails ( thanks Pam)

Next blog I am going to write about all the ways Mom is turning into my Grandma. Those of you who knew my Grandma will understand and those of you who didn't have the pleasure of knowing Betty Walraven will still be laughing out loud as you read the blog...It's going to be a funny one!