Improvements at the June E. Nylen Center

Today was a windy drive, but the roads were clear.  There were some trucks that looked like they were really struggling in the wind today.

Last week they started remodeling the changing rooms in the radiation wing.  They took out the old lockers and installed really nice cabinetry with hooks inside to hang your clothes.  The old lockers were very tiny and you had to pretty much stuff your clothes in to make them fit.  (In the summer I'm sure it isn't a problem, but when it is negative wind chill and you have a thick sweater...)  The other advantage to the new cabinetry is that the bottom is closed off.  Nothing can roll under the lockers and get lost (like my earring back).

Each changing room took one day to complete.  The changing rooms are directly adjacent to a small waiting area.  The day that the women's changing room was being remodeled everyone had to use the men's.  The men's room is much smaller, and the door didn't quite close.  I had to hold the door closed with my foot while I changed.  The men's room was the last to get the cabinetry, so I don't know if they fixed the door.

On Tuesday a furniture truck was parked in front of the cancer center.  They were bringing in framed art work.  I didn't get to see where they took all of the art work, but I know that it isn't back in the radiation department.  It is kind of exciting to see what will happen next.  The chairs in the lobby don't look very old, so if something gets remodeled it will probably be in an area that I don't visit.

Today I asked the snack volunteer where all of the snacks came from.  (They have a volunteer that pushes a cart around offering snacks each day.) She said that some of the snacks came from a bakery and some of the snacks were made by volunteers.  Today they had a number of fancy cupcakes.  I didn't try any of the cupcakes, but they sure looked good.

Hair Like Velvet

The wind was really howling last night.  Ted woke up at 2:00 A.M. with a super wet diaper.  Ted had a diaper and pajama change and then a drink with cuddles.  I went to put Ted back in his bed and discovered that his bed needed a new sheet and blankets.  I took Ted back to Ryan and went downstairs to find the sheets.  After the bed was made I went back to get Ted.  I picked him up and he reached up to rub my head.  It was almost like he was saying "Thank you Mom"!  Whatever the reason, it melted my heart.

We didn't get the snow last night like they did in Ames, Des Moines, or Charles City.  This should mean that I can safely travel to Sioux City today and check another day off my calendar!

Bitten by Fleas?

Last night I woke up around midnight.  I had been itching my ankles and dreaming that I was getting bitten by fleas.  I discovered that my ankles, feet, and fingers were covered in the reoccurring rash.  I went downstairs and took two more Bennadryl and slathered on some hydrocortisone cream.  I was relieved that I was able to fall back asleep.  This morning after everyone left I fell asleep on the sofa.  That's what I get for all the Bennadryl that I've taken lately.

Today the roads were fog and ice free.  My appointment was fast and straight forward.  Today I am 1/3 of the way done with radiation!

Finally, some answers!

Will had a two hour late start today, so I was a little worried about getting to Sioux City.  Will and I watched one of his programs, put gas in old red, and went to HyVee to buy him some milk free snacks for school.  I took Will to school and returned home to finish some laundry.

My driver for today needs a gold star.  We drove through thick fog and then everything would be fine.  I'm finding that the trip to Sioux City involves frequent patterns of fog and no fog.

The doctor answered my rash question today.  He said that sometimes when a patient has had a reaction from chemo then the patient will continue to have the same reaction for months afterwards.  He did promise that my rash problem will eventually go away!  He didn't really want to put me on a steroid  and I don't want to be on a steroid.  He said that for now Bennadryl is going to be my best friend.  I am so happy to finally have an answer!!!!  I love that the radiology oncologist listens to me and takes me seriously.  I do find one thing strange. He wears black canvas shoes.  The kind that could be purchased at a dollar store.  He must have really good feet if he can wear canvas shoes all day.

Too much excitement

The past four days have been full of ups and downs.  On Thursday as I was walking into the June E. Nylen Center I heard a thump sound.  I turned around to see that, somehow, items had fallen out of my purse and onto the floor.  I picked them up and put them back in my purse.  On my way home I discovered that my cell phone was no longer in my purse.  My drivers called the phone to see if it had fallen out in the vehicle.  (I was worried that the ringer had been turned down.)  When I got home I tried to call my phone, but ... it seemed hopeless.  I called the June E. Nylen Center and asked if a cell phone had been turned in.  They had a cell phone, but not my cell phone.

Meanwhile, Ted had fallen at daycare and people were trying to call and text me...Ted had cut his chin open.  Our daycare provider didn't know if he needed stitches or not.  Ryan finally called our home phone and by this time it was 4:15.  I was hoping that we would not need to go to the E.R. As it turned out, Ted's cut stopped bleeding and it did NOT need stitches.

So Friday came and I still hadn't found my cell phone.  My Friday drivers were the same as my Thursday drivers, so I looked in the vehicle again on the drive to Sioux City.  No one in the June E. Nylen center had found my cell phone.  On the way home I just happened to look in the basket full of maps and guide books.  I could hardly believe my eyes, there was my phone!  I had gotten at least four phone calls and my ringer had indeed been turned all the way down.

Saturday morning got off to a rough start.  Ted fell and hit his head on a stool in our rec room in the basement.  He had a cut close to his eye.  We all had to hurry and find clothes (we were all still in pajamas) so we could take Ted to the E.R.  Thank goodness the E.R. wasn't busy.  They were able to fix his cut with glue and told us to watch for a concussion.  All said it took us less than an hour, which is pretty good for E.R.

We have tried to keep things low profile for the remainder of the weekend.  On Saturday I had to take Bennadryl for a strange rash.  I don't know why I keep getting a rash.  At this point I would be happy to see anyone who could tell me why I keep getting a rash and what I can do to get rid of the rash.  Bennadryl is like taking a sleeping potion, and isn't really a good long term solution.  I hope that Monday will be a rash-free day!

The Rodeo Queen

Yesterday I had a ride from a retired Storm Lake teacher.  It was so much fun to catch up!  The difficult part about seeing the retired teachers is that they are usually subbing in the building and we don't have time to talk.  

We got to the June E. Nylen Center early, but the radiation people were running early.  I hardly had time to sit down and my buzzer went off.  I wore a turtleneck with a warm wool sweater yesterday.  When I took my turtleneck off I thought, "Wow that was a tight squeeze. I hope my earrings are still there".

One of my earring backs had fallen off.  I shook my shirt, but the back was no where to be found.  I took my earrings off and put them in my purse.  I went to my treatment and told the technicians that I lost my earring back.  I asked them if they had a flashlight.  They said that they did and they would get me one after my treatment.  

Following my treatment one of the technicians looked in her drawer.  There were two flashlights, but both of them needed new batteries.  I told them that was O.K. I forgot there was a flashlight app on my phone.  I went back to the changing room with my phone in hand.  The flashlight app isn't as effective when the lights are on.  I had to get close to the floor with my phone and I'm glad I did or I wouldn't have found my earring back.  I looked under the lockers and whew, it was under the lockers!  I was so happy!  I changed back into my own clothes.  As I was walking out one of the technicians was standing in the hall.  She was relieved that I had found my earring back.

When I walked out into the lobby channel 9 was interviewing a rodeo queen.  She was all decked out in her big white hat, queen sash, and other rodeo garb.  It was quite the sight!  Her interview didn't make the cut for the news last night, but they did show the the "rodeo group" handing over a check.  There was an interview just not with the "queen".  I was relieved that I hadn't been caught walking in the background.  Apparently a rodeo association gave money to the cancer center.  It made for an interesting change.  It isn't everyday that a rodeo queen is walking around the lobby.

Ted slept until 11:00 p.m. last night.  He needed a diaper change and a drink, BUT he then went back to sleep!  Hurrah!

My rides for next week are full!  Thank you everyone for your help!  Here is the link if you are interested.

Rides to Sioux City

I love the night life (NOT!)

Poor Baby Ted had a rough night, but that also means that Mom and Dad are up too.  I am not sure why Ted was having such a difficult night.  He is getting more teeth...I offered him a drink, but he wouldn't go back to sleep.  I ended up taking him downstairs.  He didn't want to rest with me on the sofa, so I ended up feeding him a banana.  He would sit with me and eat his little snack.  Then he sat with me and looked at books.  Finally, I put him back in his bed and he went to sleep!  Little Monkey!  This morning he was still asleep when breakfast was ready.

I've started a few loads of laundry, but I'm trying to rest as much as possible.  My sinuses are bad, so I'm thinking I better take a Dramamine so I don't get car sick on my ride to Sioux City.  I hate when my sinuses are bad  then I get dizzy.  (Insert sad face here)

I couldn't manage my road to recovery without help.  Thank you so much to everyone helping our family!  People have been so gracious with rides, making phone calls, offering meals.  Thank you!

Energy Crash

Well, I knew it had to happen sometime.  I finished the last of my steroid following my last chemo, I think I've caught whatever Ted is getting over, and radiation causes fatigue.  No wonder I feel like a villain stole all my energy.  I rested most of the day on Sunday.

Will celebrated his 8th birthday on Sunday.  Since Will didn't have school today and Ryan had the day off from work, we went to Sioux City early and ate at Red Robin.  After lunch we had a little extra time so we went to the mall.  Will really wanted to look at the clock store.  We compromised and looked in the window.  Then we walked on to the book store.  It was fun to leisurely look at books with Will.

I remembered that Mondays were the day when I would talk to the nutritionist and doctor, so I told Ryan that he and Will should go do something fun.  It was good that they went somewhere.  I was at the June E. Nylen Center for a little under an hour today.  First I had my treatment.  Then the nutritionist gave me a sheet of foods to avoid and foods that should be increased.  It was actually rather interesting.  While I was waiting for the doctor I looked at the sheet.  The nutritionist came over and asked me if I had any questions.  We started chatting about Ames.  She graduated from ISU.  It was a nice way to pass the time while waiting for the doctor.  Apparently he had a consultation today, but it was still less time than I would wait to see Dr. Doddabelle.  Once he came in he probably talked to me for less than 5 minutes, but he said that everything seemed to be going well.

As I look to next week I still have Tuesday, January 29; Wednesday, January 30; and Friday, February 1st available for rides.  Rides to Sioux City for Radiation  The nurse said not to worry if we have bad weather.  I should call and tell them that I can't make it and the radiation will happen another day.  They don't want me to come if the roads are bad.

Beautiful Day for a Birthday

This morning I had to run to the store quick before taking Will to school.  They were celebrating his birthday in his class today and Will's treat of choice was popsicles.   I walked Will into school and delivered the treats to his teacher.  On the way out I stopped by my "office" to visit.  The Title and ESL teachers and my wonderful long term sub had made me a "tree" on which little Bible verses can be placed.  The little stone has the Bible verse.  I placed my tree on the ledge by the kitchen sink so I can look at it and think of the Bible verses while I wash my dishes.

About 45 minutes before my ride was due to arrive I had a phone call from a local floral shop.  They asked how long I would be home this morning.  Not long after a beautiful floral arrangement was delivered.  I almost cried when I saw that it was from the Storm Lake Elementary staff.  It meant so much to me to receive flowers on my birthday!

The weather today was just beautiful for a drive.  Who could believe that we would have such a warm sunny day in January?  Today one of the semi-retired Storm Lake teachers drove me to my radiation.  It was so much fun to catch-up with her.  It is also interesting to see all the different ways people take to get to Sioux City.  We always have the same starting point and ending point, but the middle is always slightly different with each new driver.

My buzzer went off almost as soon as it was handed to me.  The radiation gals were waiting for me and my treatment went fast today!  While I was in treatment my driver went for a short walk around the downtown area.  To keep my mind occupied during today's treatment I sang nursery songs to myself.  It really does help to have something to recite or sing while holding very still.  I was also sure to relax my legs as much as possible while they were positioning me for my treatment so my muscles wouldn't tense up.

Overall, I would say I had a really good day!  I appreciate all the warm birthday wishes!  Year number 38 may have given me lemons, but I think year 39 is going to give me lemonade (pink lemonade)!

Waylaid by the Patient Advocate

Last night the arm on my surgery side ached, so badly that I had to take some ibuprofen and sleep with my arm propped up on a pillow all night.  I wasn't extremely excited to repeat radiation today after last night.

On the bright side I had another beautiful day for a drive to Sioux City and another very competent driver.  It has been fun to learn more about my Storm Lake neighbors and I keep thinking of questions to ask them when I next get the chance.  People have many interesting stories to tell; it is just a matter of finding the time to hear them!

Today as soon as I got my buzzer a woman seemed to swoop out of nowhere to identify herself as the patient advocate.  I was sure to tell her right away that I had had difficulty with my arm last night.  I learned that the Lymphedema specialist only comes to Sioux City once a month and she came this Tuesday.  What?  Good grief, Charlie Brown!  I missed her by one day in either direction?!

My buzzer went off and it was time for my treatment.  The technician asked me how I was after yesterday's treatment.  I told her about my arm and she said that that isn't usual after treatment.  (Nothing about any part of my cancer treatment has been usual.  I really wish that people would stop saying that to me.  My soap didn't give me a rash and I'm pretty sure that holding my arms still over my head for 1/2 hour + the 70 min. x 2 car trip affected my arm.)  The whole thing was little more bearable today since they didn't have to take any "extra pictures".

After I was done with my treatment the patient advocate found me again.  She got way more information out of me than I would have liked.  I did find out that there is a shuttle that originates from Storm Lake each day, BUT and I do mean BUT...I would be picked up at 7:00 A.M. and wouldn't return until ??? (I would be one of the first ones on and one of the last ones off!  Does the shuttle make restroom break stops?  Woah...I think the shuttle will be a last resort!

I feel better tonight than I did last night.  Relief!  Hopefully I will sleep better tonight!

First day of Radiation

Today was my first day of radiation.  It was a beautiful day for a ride to Sioux City and I had wonderful conversation with my two competent drivers.  (I think this is going to be a good way to get to know my Storm Lake neighbors a little bit better.)  Rides for Radiation in Sioux City 

My appointment took 1/2 hr. today.  They had to take "pictures"  and then the doctor came in and checked where the green rays were hitting.  It was more "hold very still"!  I felt disoriented after the pictures and the radiation treatment.  After I changed back into my own clothing I just had to drink a glass of water and sit for a moment.

When I first got home my head felt muzzy, but I'm feeling a bit more clear headed now.  I am tired!  It is probably a combination of nerves, "staying still", and a big trip to Sioux City.  One of the side effects of radiation is fatigue, so I'm expecting a lot of early nights.

Today, in the mail,  I received a page of healing prayers sent by one of my dear colleagues. I think that the prayers will bring me comfort and I am going to try and memorize one of them for the "picture days" of radiation.  Maybe having something in my mind to say will help me relax as I wait, "perfectly still".

Day of Rest?

Today is my first day at home, without travel for quite some time. I feel like there is so much that needs to be organized or fixed.  I just can't make myself sit down.  I'm sure that the steroid is propelling me along right now.  I will need to force myself to rest after this blog post.

Yesterday I called the doctor about Ted.  The nurse made it sound like unless things got worse for Ted we should just stay the course.  Ted was up in the night needing extra cuddles, but he did settle back to sleep in his own bed until morning.

The radiology appointment, yesterday, went smoothly (I guess).  It was a lot of in the machine and out of the machine.  The technician would come in and move me just a touch and then back in the machine I would go.  Something inside the machine would visibly spin and then I would slide out of the machine.  The pattern would repeat.  Finally, the settings were beamed to either somewhere within the June E. Nylen Cancer Center or to one of the hospitals (I'm not sure).  I had to stay perfectly still while all the settings were being sent and confirmation was returned to the technician. She then made my permanent marking for radiation.  I was exhausted after all that "stay perfectly still"!  I was unable to move my arms when she said I was done.  It was like one of those party games when you push your arms against the door frame, step out, and your arms move upwards like magic.  I didn't really think my problem was quite as funny.  After all this, what I'm really going to need is a spine adjustment and a spa day.

Now I should go take some time to rest.
Rides to Sioux City for Radiation

Burning Rubber to Sioux City

Our family was up and out of the house early this morning.  Ryan and I were on the road by 7:30.  We got to the June E. Nylen Cancer Center at 8:50.  The woman misunderstood my name and gave me a buzzer for someone else.  I'm not sure how she figured out her mistake.

They showed me where to change each day for the radiation.  Then they took me back for my markings.  It was quite a long process and I am now exhausted.  I can see that in some ways it will be easier than chemo, but there really is no "down time" when you must travel far each day for treatment.

At this time my radiation is scheduled for 2:00 p.m. M-F starting Wednesday.  I've added meal train for rides.

Rides to Sioux City

Sunday update

The humidifier in Ted's room seemed to help him sleep last night.  His nose continues to drain today.  I'm glad that he is draining rather than the alternative.  His breathing sounds a little like a purring kitten.  It sounds like he needs to use his nebulizer.  He will probably need to go into the doctor so we can get medication for the nebulizer.  It probably wouldn't hurt to have his ears checked.  He has been very low key today and is taking a nap right now.

Will hasn't said a word about his tooth, but now that I think about it he has only eaten soft food today.  Yesterday he complained after biting into a carrot, so...

Rough day at the Harder house

I was up and going by 5:30 this morning.  I'm chalking this up to the last round of steroid.  I organized the spices in the cabinet and wiped the cabinet out. I also ran countless loads of laundry today.  Now that it is 7:00 p.m. I'm ready to drop. I was sure to only drink decaf coffee for the rest of the day today (aside from my first cup of regular at breakfast).
 
Poor Ted just wasn't himself.  He had a rough day.  He has a little cough and his nose just runs and runs and runs.  We put a humidifier in his room tonight.

Will has a front tooth that the dentist has been watching.  Today Will told me that part of his tooth chipped off and he wanted Tylenol.  Will never asks for Tylenol, so his tooth must really hurt.  We only had baby Tylenol in the house, so I had to give him the maximum baby dose. This afternoon we went to Walmart and bought some children's ibuprofen.  I hope this provides him enough relief until Monday.  (It appears to be working, he is throwing his super heroes down the stair way.)

So if things don't improve at our house, I will need to take Ted to the doctor and Will to the dentist after I'm finished in Sioux City on Monday.

Radiology Consultation

Today I met with the Radiology Oncologist.  So if you are counting, I've been in three different doctors' offices this week.  It was quite a long appointment, over an hour.   It was really daunting to walk into that huge June E. Nylen Center.  I told Ryan that the BVRMC Oncology area is so much smaller and intimate.  The June E. Nylen center is a very nice and up-to-date facility, but you really aren't going to start a conversation with the people waiting around you.  Some of the people waiting had little buzzers like at a restaurant.   My heart was really racing by the time the nurse came to get me from the waiting area.

It was quite a long appointment, over an hour. First we met with the nurse, and she was very very nice.  We then met with the Radiology Oncologist.  He was also nice.  It was a positive appointment.  The doctor reconfirmed everything that Dr. Dierking had told us.  He said that I was extremely lucky to have the kind of cancer that is estrogen suppressed and not the triple negative kind.  He said that the tumor that was removed was less than an inch and had clean margins.  They removed all 8 lymph nodes on the right side and only one node was affected.  That node didn't even have "roots", I guess I don't even know how else explain what he said.  He was surprised that I had had an MRI, but he said that was very good that I had had an MRI!

Ryan will take me back to Sioux City bright and early on Monday so they can make the settings for radiation.  I will also get my radiation "freckles" as they call it (basically tiny little tattoos for where to focus the zapping).  It will be another long appointment!  They told me to take my special medication that has been prescribed for anxiety.  My blood pressure was elevated, but much lower than Wednesday. My heart was clipping quite fast. I was almost in tears when the nurse started talking to me in the little exam room.  I really was quite nervous today since I really didn't know what to expect.  The doctor said that I have had a rough go with chemo and prednisone isn't "easy on the system".  He told me that radiation should be MUCH easier!

Before we hit the road, I hit the restroom.  While I was waiting I could hear Dr. Doddabele talking.  It was comforting to hear a familiar voice echoing through the halls of the June E. Nylen Center.

BP Report- and I'm not talking about the oil company

I should have titled yesterdays blog "Chemo makes my blood boil".  I wasn't particularly upset about anything.

I saw my family doctor this morning.  My continual use of steroid makes my blood pressure control not a cut and dry matter.  It isn't as easy as just having more of my first blood pressure medication.  I will now have two blood pressure medications.  This new medication may cause nausea.  I hope that it doesn't, but hopefully this is a temporary situation (taking two medications for blood pressure control).

 Funny story, while at the doctor today they weighed me, that is really not the funny part.  Anyway, the scale in Oncology must say 0 lbs 0 oz. before you step on or it won't work. The Oncology is really slow and stepping on it early doesn't help the matter.  So, I stepped on the scale this morning and it didn't say 0 lbs and 0 oz.  I jumped back off.  The poor nurse!  I know she wondered what I was doing.  Then someone was bringing another patient back from x-ray in a wheel chair.  The nurse was trying to tell him that he could go back into the room he was in previously by opening the door for him.  I thought she was opening the door for me.  I walked right in the room.  She had to tell me that wasn't my room.  Oh my...I am just relieved to have an answer for my high blood pressure!

This has been an extremely busy week for our family and tomorrow I will go to Sioux City for a radiation consultation.  Whew, what a whirl wind week!

Makes my blood boil

I went in early this morning for my nurse evaluation.  I was the first one to get to the lab this morning and when I was done at the lab there were quite a few people waiting and more on the way.  My blood pressure was quite high again today.  Ugh...even though it was 9:00 by the time I left this morning the doctor still wasn't there.    They told me that they would flag my blood pressure and call me.  They called me at lunch time and told me to take another blood pressure medication pill and then make an appointment with my family doctor for Thursday.

I can tell that the rash is on its way.  My skin is starting to itch, so I should take a Benadryl.  I've been resting due to my high blood pressure.  I hope they can get my blood pressure medication straightened out tomorrow.

Taking back the house!

Chemo is DONE!
Today I felt enough better that I finally tackled a few things that should have been done months ago, but we were waylay-ed with more pressing issues.  It felt good to start taking back my life a little bit!  My plan is to try and get a few things under control/tamed before radiation starts.  I know that I'm going to be tired from radiation and from traveling to and from Sioux City every day.  It may not look like I did anything in the house today, but I know and that is what is important!  There are somethings that one must just do for one's self.

I called Oncology today to change my nurse evaluation time for Wednesday.  It was a good thing I called them!  They said that due to the chance of freezing rain on Thursday all chemos have been moved to Wednesday.  They said that the only way I will get in and out in a timely fashion tomorrow is to come right at 8:00!  Whew!  I am glad that I called so I wouldn't end up waiting and waiting and waiting just for a nurse evaluation.

Ryan has been at a meeting out of town, so I will be glad when he comes home tonight.
Friday I have my radiation consultation in Sioux City.  I should know more after Friday.

Celebratory Cake!

The oncology staff at BVRMC is awesome!  The nurses brought cake and threw confetti to celebrate Kara's final treatment.

Last Day of Chemo

It is official, today is the last day of chemo!  I'm still having delayed allergic reactions to chemo, so I'm taking either Benadryl or a steroid or both.

 I will be starting radiation, but I don't have the information about treatment start date yet.  I've been told that the Sioux City Radiation department will call me to set up my first appointment.  I will also be starting another long term (meaning 5yrs) daily drug to help keep my cancer in remission.

Another patient sent me flowers today!  What a wonderful surprise!  I had seen her and chatted briefly, but I didn't even know her name.  I've said this before, but our Storm Lake Oncology is so amazing!  The nurses, doctors, and patients really support each other!

I hope that 2013 is full of health and healing and good news!