The Party Room

 

Monday was chemo day. This was infusion number four on my backward countdown from six to one. Number one, my LAST one, will be at the very end of August.

 

I arrived early (7:20am is early for me!!!) at the RMCC for my blood draw which was taken from my port. During the next hour, they checked my blood to make sure it is built up enough to have another round of chemo before any infusions can begin. At 8:30, I saw my oncologist, Dr. Terstriep, for the first time since I began chemo. Since I had been seen previously by 2 different oncology PA's (physician's assistant) and 2 different oncology CNP's (certified nurse practitioners), I didn't have too many pressing questions. The few I had were answered quickly and easily.

 

 

My infusions started at around 9:15 am. During this infusion, I think I got about seven or eight different bags of "goodies!" The photo above shows the IV pole decorated with my goodies! Only one or sometimes two of the bags are going at the same time. Some, like the big bag, are used a lot.  It may have been being used in this photo or it may have been on standby to be used again later after the drugs were delivered into my port. 

 

 

One of my hats...

 

During my infusion, I get a dose of Benadryl to alleviate some chemo side effects. Benadryl makes me VERY tired and sleepy!!! When I nod off, my wig slips waaaaay down over my nose so breathing becomes a problem. Also, when I wake up and try to see, I think I've become blind from the chemo (haha!) because my eyes are completely covered by my wig!!!!! So, in order to not panic my very sleepy self, I take my wig off and wear a hat. The hats don't slip down as easily and I don't look nearly as goofy as the "drugged up woman with her nose covered by her wig" if I just sleep with my hat on!!!

The blood pressure cuff puffs up every 10 minutes so I shouldn't be able to fall asleep that easily anyway!

 

 

There are no clocks in the chemo rooms, so I always need to check my phone if I want to know about what time of the day it is since I'm there most of the day! If this photo was taken pre-Benadryl, I may have been playing a game or googling something. If it was taken post-Benadryl, I wouldn't remember whatever I was looking at anyway!!!

 

 

Are you wondering why I titled this post "The Party Room?"

Well, at RMCC there are quite a few private rooms which I really appreciate getting if I have to be there aaaaalll day long. However, there were NO private rooms left on Monday so I got put into the "Party Room!" 

 

You'll NEVER guess the reason why the rooms were not available...SUGAR ANTS!!! Yup, those little critters had invaded four of the private rooms so they were waging a "sugar ant war!"  I thought that was very funny!!! 

 

The Party Room is a big room with five to seven spaces/chairs in it for people to get their infusions. My last experience in the Party Room was enough to make me want to run out of there screaming!!!! 

 

For one of my Herceptin treatments, which only take about an hour and a half total, I ended up in the Party Room.  The poor woman in the chair RIGHT next to me had some issues with her mind. Since there were five of us getting an infusion in the Party Room that day, every time ANYONES IV beeped in the room, she would whip the curtain back and yell at me, "You're beeping!!!" Since it never was me beeping, I would kindly try to tell her it was ok and that someone would come to take care of it. Well, after that happened about 17 times, she finally quit that and decided that maybe I wasn't beeping!

 

Next, she turned up her TV so loud, I'm pretty sure they could hear it in the parking lot! There were several other issues too but those two topped it all!

 

So...to the Party Room Katie and I go...again...groan!!! (I was remembering my last Party Room experience!)

 

There are a few curtains which may be pulled occasionally (like when they access your port) but most of the time the curtains are just open. Since I knew the spaces were tight and Katie was with me, we tried to choose the spot that would give us the most space (which didn't really work so well because the spots are TIGHT!!!)  Arland was also there for lunch! My poor nurse really had to be part acrobat to get at all the supplies, drawers, IV pole, etc. that she needed to access during my infusion. However, we made it work!

 

It's just nice to have someone there with you if you're there all day to help pass the time...even though I'm a little goofy half the time because of the Benadryl. Thankfully, Katie accepts my "loonyness" and just puts up with me asking the same goofy questions repeatedly! The Golden Thread for the day was that Katie made the space work and NO ONE whipped back the curtain to tell me that I was beeping!

 

Thanks, Kristi, for uploading these pictures for me again!

  

Old Habits Die Hard!

     Almost one month...nearly four weeks...28 days to be exact. That's how long it's been since I had my head shaved. And yet, what do I do EVERY morning as I get ready for the day??? I reach for my brush! You would think by now I'd be used to not having any hair.  But nope, every morning I still reach and then      I remember. 

 

      My curling iron, which I used every morning for years, is also lying there, waiting for me to use too.

 

     By now, you'd think I'd be used to seeing my bald head in the mirror each morning. But again, nope. For that split second, it still takes me by surprise to see and then recognize the person staring back at me.

 

     I guess it's time to put the brush and the curling iron away. However, in doing so, it's one more acknowledgement that my life has forever changed. That I have cancer. That I've got a LONG ways to go. That I won't need my brush and my curling iron for many, many more months. That I'm still getting used to the "new normal".

 

     As I said, old habits die hard.

 

     I am going to mention two of my most faithful cheerleaders tonight (actually early morning...2:09 am).  Every third day or so, I get a card with hand written words of encouragement from two friends I used to teach with. Leighan and Deb always lift my spirits with their cards and encouraging words. I do take their words to heart! Part of what they wrote in my last card said, "You are surrounded by beautiful people.  Stay strong friend." Thank you both for being my friend!

 

 

     I AM surrounded by lots of "beautiful people" who DO help me stay strong! My family, of course, comes to mind first.  No one can help me enjoy life more during this venture than Arland, our kids and their spouses, and especially my grandkids, Brody, Logan, and Olivia. The last three make me want to live to be 100 or even 101!!!

 

     The next "beautiful people" who come to mind are all the people who read this blog.  I appreciate all who say that they are keeping up with what's happening in my journey by reading my blog. All of you uplift and support me when you comment or say that you enjoy reading my posts. The golden thread in this is that I am staying connected through my blog to many dear friends and acquaintances.

     Another dear, sweet friend, and "beautiful person", is Heather. Heather recently sent me a book. It is called "No Lumps, Thank You" by Meg Spielman Peldo. The book has short, uplifting stories written by breast cancer survivors. The day the book arrived, I was having a bout of tears.  As I read the book, my tears of sadness turned into tears of laughter!!! I was actually laughing out loud after reading several of the stories! Some of them are hilarious!!! Thanks for helping me get through a teary time, Heather.

     The last "beautiful people" I'm going to mention tonight are all the friends who have sent me cards and notes since my venture began. Each day, I am so fortunate to get a card or two with kind, supportive words that give me encouragement and keep me going. Thanks to all of you who have sent a card! I very much appreciate them and feel so very blessed!!!

                                     

Bonus Week!

     It occurred to me that I had not reported on my last chemo (#2). I had shared pictures but not results!

 

     Chemo # 2 was on Tuesday, May 27th. It was very scary because I didn't know if the medication my oncologist gave me to prevent the rare side effect I had after my first chemo...horrible stomach pain...would work or not! 

 

IT WORKED!!!  

 

I did NOT have the horrific pain that put me into the ER after my first chemo treatment! I am soooo grateful for that medication!  

                  

     I got the Neulasta shot 24 hours later (it always has to be given 24 hours later) on Wednesday at 4pm. I felt pretty good on Wednesday, other than the flushing which occurs because of one of the chemo drugs (red face, ears, neck...no pain, just lots of heat!!!). I began taking the anti-nausea pills that day.

 

On Thursday, I had nausea and some bone pain from the shot. I continued the anti-nausea pills. By Friday, I had considerable bone pain and nausea.  I switched to the second kind of anti-nausea pills I have been prescribed. The nurses have instructed me how to take the pills for the best outcomes. I was still nauseated. I spent most of the day on the couch.

 

Saturday was about the same as Friday, mostly on the couch or the recliner. Sunday I felt better but had low energy. I did not go to church. Just simple things take a ton of energy. For me, lots of diarrhea accompanies chemo so that also saps my energy. Sorry if that is too much info!

 

     Another reason I have low energy on chemo weeks is because it is VERY difficult for me to eat. I usually eat a piece of toast in the morning and a small container of yogurt towards the evening. Sometimes I can eat a very small portion of homemade chicken noodle soup that I have made and frozen during my good weeks. Food has ABSOLUTELY NO appeal during the five days when I am nauseated. Everything tastes weird too, even water!

 

     By Sunday night I was feeling a little better.  Monday morning I felt ok. I had an appointment with an oncology PA at 7:30 and I got my Herceptin infusion at 8:30. I was done by mid-morning. I was mostly done packing so Arland and I left for Missouri by noon.

 

     Monday night I was quite sick. It may have been from chemo, from traveling, or from a snack I had eaten in the car...or maybe all three! By Tuesday morning I felt better again so we continued our trip. Since my nausea had improved, I stopped taking my anti-nausea pills. For the rest of our trip to Springfield, IL. I felt good, but tired. I slept a lot on both Monday and Tuesday when Arland drove. 

 

     By Wednesday, I was feeling pretty good. Arland had meetings all day so I decided I would go shopping for a short time that afternoon. I went to a HUGE mall. I parked by Dillard's so when I was ready to leave, I walked towards the Dillard's store. It didn't look right but I KNEW I had entered at Dillard's! Unfortunately, there were TWO Dillard's in that mall and I was at the wrong one. The other one where I came in was on the opposite end of this HUGE mall! I was tired already but there was only one way to get to the other end so I started walking! Half way, I had to stop and rest but eventually, I did get to the right Dillard's! Lesson learned...pay attention to how many stores with the same name there are at a mall!!!!

 

     The rest of the trip was uneventful and I felt good! Our trip was relaxing and fun. I'm so glad I was well enough to go! That was more than a golden thread...it was more like a golden blanket!

     Some questions have been asked of me about chemo so I'll answer them.

     One of the questions often asked about chemo is, "Does it hurt when you get the chemo drugs?" The answer is that after my port is accessed, there is no pain. The drugs going into my port go directly into a big vein near my heart and it feels like they are just putting regular IV fluid into me.

 

This is a drawing of where the port is placed. Of course, the purple port and the catheter line are under my skin.

 

 

This is a drawing of the parts of the port. All the parts are under my skin.

     Another question is about my port and if that is painful when they access it. Some of the nurses are better at getting the needle (its a BIG curved needle) into my port with less discomfort than others. I have a cream called EMLA cream that I put on one hour before my port gets accessed. EMLA cream numbs the skin so I don't feel pain, just a lot of pressure when they push the needle through my skin and the silicone covered port. The port feels bruised for a day or two after my infusions but not painful. 

 

     A third question is about the port bleeding. After my infusion, the port is covered with a Band-Aid. When I remove the Band-Aid at home, it has a small spot of blood on it. This past time when I removed the Band-Aid, I noticed the whole pad on the Band-Aid was covered with blood. I looked at my shirt and I had a soccer ball sized blood spot on my shirt.  My port had bled and I didn't notice it as I drove home.  No one else had noticed it either as I left RMCC because I had a black fleece sweater over my shirt that covered the port area. Guess I'll have to pay attention to that too from now on!

 

     Another person asked why I had a blanket on in one of the pictures during my infusion. The fluid and drugs (I get six to eight different fluids/drugs on chemo days) that I get in my IV/port are either refrigerated or stored at room temperature. When that much cool/cold fluid goes into me, I get chilled so I always say yes to the nurses when they offer me a warm blanket. I cover the warm blanket with the fleece that Katie gave me to keep the heated blanket warmer longer.

 

     If anyone wonders about anything, just ask! If I know the answer, I will tell you. My teacher instincts (obsession) will just not quit!!!

     I bet you are wondering why the title of this post is called "Bonus Week." The reason? I get an "extra" week...a BONUS week...before I have to have chemo again. In order for me to feel good at Arland's retirement party on June 19, I get the week of June 16th off from chemo, a HUGE golden thread!! My chemo was scheduled for June 16th but my oncologist said we could push it back a week. I could have kissed her! Luckily, I saved myself embarrassment by restraining myself and just thanked her profusely!

 

Oh, happy day...or rather, OH, HAPPY BONUS WEEK!!!

Choices

     Life is full of choices. Once in a while, however, we get handed something we would NOT have chosen...like cancer.

 

     The choices that come with cancer are many, some hard, some easy. Treatment...Duh! Yes, of course! Port or veins...I chose a port, some choose veins. Shave your head or watch your hair fall out...I shaved it off. No choice is right or wrong, it's just what feels best for you.

 

     At one of my Herceptin infusions, I noticed a 35ish year old lady ahead of me in line to check in. She had chosen not to shave her head, nor did she wear a hat or a scarf. Her once blond hair was extremely patchy and almost all gone. As I looked at her, I felt sorry for her because she looked very ill. Her choice was to face cancer with her hair falling out and not cover it up.

 

     As I thought about her choice over and over again, I realized that others might view me as sick too. When I make the choice when I go out to wear my hat instead of my wig, others might look at me and think the same thing I thought about that lady... that I look sick. I don't want people to look at me and think that I am sick!!!  I want them to think that I look ok or even pretty good, considering the circumstances!

 

But seeing her with her almost-gone hair made me think about my choices and the perceptions given from our choices. How that lady and I both faced the same disease in very different ways makes us more alike than different, I guess, but people's perception might be different. I know mine was.

 

     So...will that make me wear my wig more often instead of my more comfortable hats just so no ones perception is, "Oh, she's sick"? 

 

NOPE! 

 

Sorry! As the lady I mentioned above made her choice, my choice is to wear a hat that is comfy instead of my wig which is not as comfy. I have decided that whatever people think can not be my concern.

 

Is that a tough choice for me? Yes, for me it is, but the reality is that I need to focus my energies on getting well and not on other people's perceptions! Besides, I have some really cute hats!!!  :-) 

 

     Another choice I have made is to get as much living done during this time as I can. I believe that just because I have cancer doesn't mean I should put my life on hold! 

 

Arland had a meeting in Missouri last week and I had the choice to go along or stay home. Some thought I should stay home just in case I get sick. Being in a strange ER wouldn't be fun but being home alone all week would have been waaaaaay LESS fun so I made the choice to go with Arland.

 

     We left Monday as soon as my Herceptin infusion was done. We drove to Council Bluffs that night and yes, I did get sick, but it only lasted a couple hours and by Tuesday morning I was feeling much better. The rest of the trip was awesome! We enjoyed our time together and I felt great!

 

     During our trip, we got to visit with a dear friend and former teaching partner, Dianne Gooch and her husband, Bill.  Dianne and I taught together for lots of years (along with Karen Paulson...we were a GREAT trio!!!). We had such a wonderful time together and our visit will be a memory I treasure for a long time...and it will give me something to smile about during my next chemo.

 

     We also spent a very enjoyable evening with Karen and Jim Larson. Karen is Arland's cousin. Karen and Jim used to live in Fargo and our families spent LOTS of time together when our children were young. It is so neat to have a relationship with people that transcends time.  We just slip right into our same comfortable ways as if we had seen each other last week, even though it has been many months! 

 

     Both of those visits were golden threads!!!

     One choice I made during the trip could have had some very serious consequences. Luckily, it didn't! The choice? To whip off my wig as we rolled down Interstate at 75 mph passing truck after truck. Thank goodness, not one trucker drove into the ditch when they saw my bald head!!!

Chemo Countdown!

 

The Countdown Continues!

 

I am counting down to my last chemo. My last pictures showed 6 fingers. This time I am only holding 5 fingers up to show slow but steady progress towards getting to the end of chemo! I had chemo on Tuesday, May 27th. I had the "nasty" shot (Neulasta) the next day.

 

 

                                             

Arland, Katie, and I arrived at the RMCC at 8:45am. I had a blood draw at 9am. They draw blood every time I have chemo to make sure my white blood count (WBC) is high enough to get chemo. Because of the "nasty" shot, it has always been high enough.

 

They can draw blood out of my port so no additional needle sticks are needed! They leave the needle in my port for the next hour while I wait for the lab to determine that my WBC is indeed, high enough.

 

Chemo begins with four pre-chemo meds.  Each of these are given one at a time in my IV port. These meds are needed to help ease the chemo symptoms I will get after my infusion. I get my Herceptin, the targeted therapy drug, first. During this entire time, there are many flushes where they use a regular IV solution to get all the meds out of the line before they start the next med.

 

By now, it is past lunch time so they bring me a bag lunch which includes a sandwich, chips, water, and a cookie.

 

When the first chemo drug is brought into my room, the nurse dons a gown, safety glasses, and wears double gloves. Then she hooks the chemo bag on the IV pole and hooks the IV tube onto my port. Yes, chemo is NASTY stuff...and I get to have it put into my body!  :-) 

 

Note: She is smiling...I am not!  Just kidding!!!

 

 

 

After the first chemo is done the nurse comes in, gets a new set of protective gear on again, and unhooks the empty chemo bag. Then she puts the empty bag and all the tubing into a BIOHAZARD waste disposal bag! Yikes!!! They are serious about this chemo stuff!

 

The next step is to hook up chemo #2  and go through the entire process again. After chemo # 2 has run out, the nurse comes back, dons all the gear AGAIN, flushes my IV, and disposes the bag and lines in another biohazard bag!

By now, it is 4:00pm and I have been at the RMCC for 7 hours and 15 minutes!!! YUP! An all-day process! Katie sticks it out for all 7 1/4 hours. Arland comes and goes. Kristi pops in when her work schedule allows. Bob has Olivia most of the time (or is flying somewhere) so he doesn't come because I don't want Olivia amongst all those icky drugs. I know it gets to be a loooooooong day for them and I very much appreciate their company.

 

Someone asked about aaaalllll that fluid. Yes, it IS a lot of fluid going in!

When I need to use the bathroom, my nurse will unplug the IV machine from the outlet (it has a battery pack so the infusion is not interrupted). Then she unhooks the blood pressure cuff. After that, I am untethered so I push my IV pole to the nearest bathroom. Luckily, there are several bathrooms there!!! All of them are individual bathrooms because it is not easy with an IV pole, IV lines, etc...
 

Because my pre-chemo IV meds include Benadryl, I cannot drive so Katie takes me home shortly after 4:00pm. It gets to be a long day for both of us!

Exactly 24 hours later, I return to the RMCC to get the "nasty" (Neulasta) shot. Twenty four hours needs to have passed before I can get the shot.

This is probably waaaay more than you wanted to know about chemo but now you know!