What the week of chemo was like for me

When I found out I needed chemo, the first question I wanted to know was "What is it like?" You hear stories, and you see people who go through it, but the details were never really clear to me. I had a long convo with my friend Lynne, and she gave me a lot of her details, but at the same time she said that it may be different for me, and it was. So here was me week...

Chemo day was pretty easy. I was a little tired but nothing over the top. My body felt "heavy." That night I slept ok, but woke up about 4 am and really didn't get to sleep much after that. It was a side effect of the meds (steroids) they gave me with the chemo. My Main Squeeze was all set to get the kids ready for school on Tuesday without my help, but since I couldn't sleep, I got up and started working on lunches. About midway, I had to stop because my stomach really started feeling bad. I started having bad indigestion - just a sour, rolling tummy, but no nausea or vomiting. The indigestion continued all week regardless of what I took for it. It made eating not fun at all.

I hopped back in bed, but had a hard time falling asleep - the steroids were still doing their thing. I usually go to Bible study at church on Tuesday morning, and I told myself that if I was still awake at 9am I'd go, but if I fell asleep, I'd skip it....well...I fell asleep, and finally got about 2 hours of sleep. In the afternoon, I had to go back to the chemo lab to get my white blood cell booster shot. I took #3 with me. He had just gotten a flu shot the week before, and I figured he'd be sympathetic. The nurse gave him a cookie. :o) Tuesday evening, I felt well enough to eat dinner with some friends from church, but when I got home, I literally fell into the couch and fell asleep - exhausted. When My Main Squeeze pulled me off the couch, I remembered that one of the nurses said to take one of my nausea meds at bedtime to counteract the steroid so I could sleep, and it worked. I slept great.

Then Wednesday hit. I felt like I had been smashed by a truck. I couldn't get out of bed. I couldn't eat anything. My stomach ached. My body ached. Fortunately, I slept, and slept, and slept. It was worse than the flu, worse than morning sickness, worse than anything I had ever experienced. My Main Squeeze was able to work from home that day, and I am so grateful. I don't remember much, but I do remember a few kisses to the forehead and his hand on my shoulder.

I wish I could tell you that Thursday and Friday were much better, but they weren't. I was wiped out. My mouth felt burnt. I ran a low grade fever. My body was sore. I slept a lot. I had more "sitting upright" moments than Wednesday, but I was dragging. We met some friends at the beach for dinner. At first, I was afraid I made a big mistake in going. I thought I was going to be sick, but it passed, and we had a nice visit. The breeze off the water was refreshing. That's one good thing about cancer...you can just sit in a chair and enjoy the view and the breeze, and nobody holds it against you. I did the same thing on Friday. The weather was beautiful. I sat in the driveway and watched the kids bike up and down our street. It was refreshing.

On Saturday, I took it easy most of the day because I really wanted to be able to go to church Saturday night. It was amazing how exhausting going to church can be. By the time I walked the kids to their classes and got into the sanctuary, I just wanted to sit. And I did sit for most of the worship time - which is really not like me. When it came time for Bible & Life Groups after the service, I ended up laying down in our car.  The other hard thing about church is that I'm supposed to be really really careful about germs right now - no hugging, handshaking, and lovin' on like all of us good Baptists love to do - but most people didn't get the memo from the oncologist about that one. How do you tell the sweet lady who's been praying for you everyday that you can't give her a hug??? Maybe I'll start wearing a sign around my neck that says "I'll take your love and your prayers but not your germs." or maybe "Fist pounds only please."


When I went to the doctor on Monday for my one week check up, I was down 7 lbs (no surprise, I hardly ate anything) but almost all my blood counts were back up to normal. The doc went through my symptoms over the week with me, and she gave me some new things to try to help. I'm taking prilosec now and the indigestion is much better. They gave me some "magic mouthwash" too, and my mouth is feeling less "burnt." I still get tired easily, but I like taking naps. I only had 1 today. I'm getting used to that being part of the new normal. I'm a little disappointed that it's taking longer than I thought it would to get back to "normal." I don't know why I expected it to happen quickly, but I did. I'm learning that each person's cancer experience is very individualized. There may be similarities in the story, but each person's journey is very personal.

Verse cards

 

Just before I started chemo, I asked my friends to send me some of their favorite verses of encouragement. I was so blessed by what I read. I wanted to be able to have these with me whenever I needed them, so I made some verse cards with my digital scrapbooking supplies. I used a kit called Secret Garden by Creations by Rachel, and the font is CK_Ali's hand_official.

I made these as 4x6 sized cards, so I had them printed out at CVS and put them in a little photo album I had lying around. I made 15 cards total, and I have the original design saved on my computer so I could make more as God shows me great verses to hold onto. I think the grand total for this project was less than 5 bucks.

If you'd like to have these cards, click this link. It will take you to my box.net account, and you can download them to your computer. Click the big download button, and then your computer will have them. If you're on a Mac, it will be in your downloads folder. If you're on a PC, your computer should ask you where and what you want to do with it. Pick a place to save them. Then upload them to your favorite photo printing place just like you would print out any photos from your camera. 

I hope you enjoy these verses!

Chemo - Blow by Blow

When I found out I was going to have to have chemo I wondered what it would be like. I googled it. I didn't find much. I heard lots about the side effects and the yukky horror stories, but not about the actual process. I realize that everyone's process may not look like this, but I want people who are worried about chemo (or worried about me) to know what it's like. Ok, so here's my day, blow by blow.

This is a huber needle.

10:45 - I checked in at the oncology office. Only had to wait a few minutes. I'm already on a first name basis with the check in lady, so that's nice. They took me back to weigh me, take my blood pressure, take my pulse and draw my blood. They did a CBC - complete blood count. The nurse was able to do my blood draw from my port. They usually only do it that way on treatment days. This was the first time my port had been accessed. The nurse pushed on my port, said, "Take a deep breath;" then stuck me with a special needle called a huber needle. The needle part sticks into the port. The tan butterfly looking thing lays flat on my chest, and the tubing hangs down. The clear knob at the end is where they attached the vials for my blood draw and my medicine bags later that day. The tan knob is where they injected medicine right into my IV.  It felt like a normal, hard needle stick, but instead of being able to feel a needle under your skin like you do with IV's, you don't. You don't really feel much of anything. When I was done, the nurse tucked the tubing under my shirt and sent me to see my nurse practitioner. I was happy that my blood pressure and pulse were lower today than they had been since I found out I had cancer. It's something I had been praying about and had been mindful of.

11:00 - I met with my nurse practitioner Bonnie. She reviewed my meds with me and went over the result of my CBC. They were looking at my blood counts to make sure they were all in the normal range so I could have my chemo treatment. She explained what each abbreviation was and talked to me about what they were looking for. She asked if I had any questions, and I said, "Nope. Let's do this."

11:20 - Bonnie sent me downstairs to the chemo lab. I waited for my name to be called. It took a while. I did my Bible study lessons, and My Main Squeeze read his Tim Tebow biography.

12:00 - They finally call me into the lab and told me to pick a recliner. The room was split into 4 big sections, and there were nurses assigned to each station. My nurse's name was Sara (no h). The recliners were pretty comfortable, vinyl, green. Each one had an IV pole next to it. And they each had an extension cord in it for plugging in electronics. A dear friend who works nearby brought me Starbucks. When she had cancer, one of her dearest friends (who also had cancer) brought her coffee on the day of her first treatment, and it meant so much to her. That friend is now with Jesus. She tries to carry on the tradition that her friend started, and it was nice to be in on it.

12:15 - The nurse gave me my anti nausea pill - called Emend. I have 2 more to take home with me - one for tomorrow and one for Wednesday. Main Squeeze came in to check on me. They initially said that he couldn't stay in the lab with me because of space and privacy policies, but he just sat quietly in the recliner next to me. The nurse took a picture of us.

12:25 - My first medication was a steroid drip and a shot of more anti nausea meds. They are given to help the chemo do it's job and to prevent symptoms. It took 15 minutes for that to go down.

my 2 bags of chemo drugs.

12:40 - The IV pole started beeping!!! That meant my first bag was done. The chemo lab is pretty quiet for the number of people in the room. The only things that are loud are when the nurses call across the room to each other (or get in lively conversations - which happened) and when the IV poles beep. Sara came and gave me my Taxetere - the first chemo drug. She explained some of the potential reactions that I may have initially and told me to let her know if I felt any of them. (I never did). I was looking at facebook on my phone, doing my Bible study, answering email (also on my phone). I brought my computer and iPad, but never brought them out. I also was told to bring a blanket because frequently chemo labs are cold and you have a hard time controlling your body temp. I didn't have a hard time with it this time, but I did pack my special chemo throw! This was my view during chemo...

.....niiiiiiiiicccceeeee.

1:15 - Two friends from church brought lunch. Skyline Chili. I had never had it before. I know! I had a chili cheese hot dog. It was good! They hung out in the chemo lab too, and we talked and talked - totally disregarding the "you can't have people stay with you in the chemo lab" policy...no one said anything to us.

1:30 - The pole beeped again. It was time for the 2nd chemo drug - Cytoxen. My 2 buddies were still there. The nurse came in and changed the bag. I asked her about allergic reactions for this one, and there weren't as many. One of my buddies and I got talking to the patient next to me about her wig that she got from the American Cancer Society. It looked great. There's a location not too far away, and they have all sort of free support things. I don't think I'm going to get a wig - probably just hats and scarves, but I think I'll check out the ACS.

2:15 - The pole beeped again, and I was done. The nurse disconnected the bag and then flushed my port by squirting saline in it. Again, I didn't feel anything except that it felt a little cold at my port site under my skin. We packed up, were reminded about the "no hanging out in the chemo lab" policy, checked out and got to the kids' school in time to pick them up.

So the big question is "How do you feel?" Fine. It was really easy-peasy. There were a few times during the treatment that I felt a little tired and a little light headed, but they were very minor. I guess the best way to describe how I feel now is "heavy." You know when you're so tired that your body feels heavy? It's like that, but I'm not tired at all, and it's not that heavy. I know I probably won't feel like this in a day or 2, and that's ok because I'm armed with all sorts of meds and home remedies to help. I know people are praying specifically that I don't have any side effects at all. One sweet lady said to me that she prays, "God, I know too many people with cancer. Can ya just heal them all? It will make prayer time easier!!" She makes me laugh.

August Roundup

I love going back and looking at the past month and remembering the highs (and sometimes the lows) of each month. I usually do this every month, but we've had a rough, full, different 3 months, so I'm playing a little catch up....no big deal :o)

BIG EVENTS

My Main Squeeze helped in Middle School camp. Yes, I know he's a High School pastor, but he's also a team player :o) He took a group of HS students to serve at camp. They led the games and craziness. He also got to fill in to speak when the Middle school pastor hurt his knee. We missed having him around the house as we were all adjusting to life in a new place. 

Starting kindergarten is a big deal at our church. They have a special kids church just for kindergarteners, and the church presents Bibles to each kindergartener. #2 was so excited to get her Bible, and she's been reading it nearly every night. This is the group of all the kindergarteners who attend on Saturday night church. The big guy in the middle is our pastor....not a kindergartener.



CELEBRATIONS/HOLIDAYS/GIFTS
Well there really aren't any official holidays for us in August, but every year in Youth Group we have Fear Factor Night where we play favorite games like Goldfish Spit where you transport goldfish via mouth from one end of the room to another, Happy Shake where you blend up a happy meal and have a race to see who can drink it first,

I love the terrified look on this girl's face :o)

MEMORIES MADE - AKA FUNNY KID STUFF
My mom and dad came to visit for the first time in our new place. We drove around the new town "to see what we could see. We ended up at a great park by the beach. What was cool about it is that most of it felt like a "park" - picnic tables, playgrounds, grass, gazebos, etc. Then you walk down the sidewalk through the dunes and BAM! you're at the beach - surf, sand, beach umbrellas - the whole 9 yards! There are tons of ducks at the park too. They followed us around - aka Duck Stalking.

Our good buddy CK came for a visit. She told us all about her mission trip this summer to Jordan, and she's praying about going into missions full time - whoa!!! She got to share about her burden and testimony with the High Schoolers....so proud of this girl!

 Main Squeeze took the kids to the playground, and they saw a rabbit, and they kept telling him how much they wanted a pet rabbit. He told the kids, "If you can catch it, you can have it." So they came home, took 2 laundry baskets and 2 baseball bats and all the carrots in the fridge and made traps in the backyard - like Wile E. Coyote and RoadRunner. The funny thing is we saw rabbits in the backyard after dinner! The traps stayed in the backyard until I needed them for laundry :o)

August 29th was the day I earned a supermom award because it finally happened - I lost a kid at church. We were trying to leave, and #3 darted out the door. When I got into the foyer, he was nowhere to be found! I enlisted the help of several coworkers to try to find him. The little punk had snuck (sneaked?) to the back of the office, through the copy room and was sitting in the hallway hiding next to a couch when on of the men at church found him. When I went one way, and they went the other, the man who found #3 said, "Your mom went the other way." #3 looked up at him and said, "I know, let's slow down and hide from her".....little punk....

DISAPPOINTMENTS

We had some major moving/adjusting/growing pains this month. It has been a busy month, and hard to get used to doing all the busy stuff while living in a new place. My Main Squeeze's Jeep ignition decided that it was going to retire - aka stop working. He spent several days working on intricate parts, and for a few days he was starting his jeep with a screw driver until he could get the right part in. Once he finally got it all put together (YEA!!), he started looking for a new ride. He was able to get a great deal on a Jeep he's been wanting for a while. I love it when a disappointment turns into something great!!

We were able to close the sale of our old home. It was disappointing that we were not able to get the true value of our home because of the crummy economy and the real estate market. I'm praising God that we were not upside down in it, and this was a real reminder to us that all we have is just stuff. It's not ours; it's God's, and He is all we need for security anyway.
 
ACCOMPLISHMENTS
The kids can all go to their classes at church, and I no longer have to have a pager!!

They can all buckle their seatbelts themselves!!!

Everyone likes their classes at the new church.

They each carry their own papers/Bibles/stuff at church. (Ok, we're still working on that one...but that's the goal anyway)

#1 started playing tackle football. The new church has a ministry called Sports Outreach, and in the fall they play tackle football. It's a little - ok a lot more intense than other teams he's been on before. He has practice 2 days a week and one game a week. He's excited about all the equipment. So are #2 and #3.

The kids started their first day of school in their new school. They love their teachers and I'm excited about their classes. Here are a few of our first day of school pictures...

#2's lunch

#1's lunch

#3 doesn't like being left out of the first day of school pictures...so here he is in his Buzz Lightyear PJs!

 

 

Don't feel too bad for #3. After #1 and #2 left for school, he asked if we could go swimming in the pool without them **mischievous grin**

I'm not sure you'd call this an accomplishment, but we added a new member to our family....Meet Yoshi.
After fear factor night we brought home the leftover goldfish, and, well....all 4 of them died. It's ok...they had been traumatized by teenagers. So the next day my Main Squeeze took the kiddos to petco to pick out this guy. #3 got to name him, and of course, he picked Yoshi because of his love for all things Super Mario.



Another big accomplishment was that my Main Squeeze got to baptize his first group of students from this new

church. Once a month, the church holds baptisms at the beach. It's a really special event. This day, there were 32 people from our church who were baptized!

Retail Therapy at its Best

Because sometimes a girl needs to think about something other than cancer....