Thursday, September 11, 2008

Chemo Round #2-Long Blog

Last night after chemo, I came home and blogged. Unbelievably after blogging my system said it wasn't connected to the internet and I lost everything so I will try to recreate what I wrote yesterday. Sorry for the late blog!

Many have asked about chemo...what the day is like, what you go through, why you get so sick, etc. etc. so I thought I would use this day to better explain the yuccky process you go through to get well.

First of all, age works against you in chemo, contrary to what I thought. The doctor said he has seen 39 yr. olds die from chemo (obviously this is my age). I may be really sick and a 70 or 80 sitting beside me will do really well.

Why? Chemo is meant to kills cells. Unfortuately science has not been able to perfect any medicine (or poison as I affectionately call it) to differetiate between good cells and bad cells. The chemo kills the good and the bad but the side effects are not from killing the bad cells, rather the good rapidly dividing cells. A younger person has many more rapidly dividing cells than an older person, thereby making a younger person much sicker.

The first day of each chemo treatment starts like this.....

1) We live approx. 1 to 1 1/2 hrs. away from Emory depending on traffic. Days like yesterday where the leg of the ride that should have taken 15 minutes was back logged and was an hour ride. Therefore our ride could stretch into 2 hrs., etc.....with early appts. between 8 am. and 9 am. we are in the work traffic congestion.

2) We start off in the Lab. Once you check in and take a seat, you can rest assure you will wait well past your appt., however if you are late, it puts you behind the stack of patients. They draw several vials of blood each time to check all my cell counts, calcium, liver function so on and so forth to see if my body can take another chemo treatment. This time they also set up all the lines running out of my port to hook up for infusion later. The process of running all my blood counts take approx. an hour thus the reason the wait is a big deal because I have 2 appts. right behind this one and if it runs behind....my whole day runs behind...

3) We are sent up 2 floors to the Medicial Oncologist. They in turn send us back down 2 floors to a Resource Coordinator because they are having trouble with Aetna billing. We clear that and back up 2 floors to the Medical Oncologist. We then continue to wait well past our appt. time. The nurse walks out of the office sees us and comes over to speak. She wonders why we are still waiting. I'm sure we are all waiting on blood work that was delayed.

4) After finally meeting an hour later with the Medical Oncologist (I'll explain more about that conversation later), we are sent down another floor to the infusion center for chemo. We are over an hour late for this appt. Our appt. is 10:30 and we are getting in at 11:45 a.m. We again wait. Once they call us up, provide my medical bracelet, take us back to my "chair", we are told they are still waiting on all my medicine.

I'm somewhat amazed that we had to wait until after 1:00 p.m. to get all my medicine. After all, I was over an 1 hr. plus late for the appt. so I assume they are biting the bullet for me to get there to keep things on schedule. Steve thinks we got there on lunch hour so the availability of those in the Pharmacy has dwindled. They start off with saline solutions they start pushing through my lines. This gives an unbelievable unpleasant taste in my mouth. He has 5 vials he has to push before starting another flush bag. I hold my nose, we all get a good laugh but it helps with the ungodly taste in my mouth until I release my nose! They start a flush bag on me in case the chemo causes immediate side effects they can't control and have to flush out my lines.

The next small bag they give is a steriod meant for nausea. This bag runs about 15 minutes followed by another medicine, Aloxi that is for delayed nausea. I then take a pill that is going to "knock me out". Same pill as last time...no effect like last time....others around me sleep....me, I'm like a squirrel peeping out its home in the tree....wide awake....not sleepy. I don't get to sleep the time away.

They are then able to hook up the "real bad" chemo and run it concurrently with another bag of drugs meant to enhance the bad chemo. This all runs for another 2 hrs. Once those bags of chemo are finished they begin what they call a push of the chemo that I will be sent home with. They literally take vials of this chemo and push it very quickly through my lines. I always feel the cold medicine coursing through my veins as they shove it through.

They start tying off my lines and start hooking up the bag of chemo and monitor they will send home with me for the next 46 hrs. They suit up like I'm radioactive. The first time they tell me the reason they have to suit up the way they do is in case anything punctures and it is for their protection. I guess since it is flowing through my veins....I don't need protection! -( They give me radioactive hazard bags/gloves for leakage at home. They tell me how careful I must be if anything leaks...do not allow anyone to touch it....blah, blah, blah....you realize this is bad, toxic stuff....thus the reason I call it my poison. I say, "Pray, get Poisoned, Pray, get Poisoned"......after all it is killing in my body....I'm so thankful for that but it still is a stinky process.

Although our day starts on the road around 7:00 am. ish....our day finally ends around 4:30, to the car and to sit in all the traffic on the way home.

I walk out hooked up to a bag, they call a fanny pack, I call an elephant pack....this thing is too heavy to hang around my waist, especially having major surgery with the type of incision I have...so I carry it on my arm. This time I'm a little more used to it....however, you can imagine how it smarts when you forget you have it....especially in the middle of the night....you get up and this bag hooked onto your chest gives you a nice pull! Ouch.....oh yeah, I forgot my bag! ha.

As I stated earlier in my Medical Oncologist meeting, I discuss the lesions on my kidney and lungs. He said no body is medically perfect and they are not large enough to biopsy them right now so they will monitor them. However, I asked if they are cancer would the chemo kill them. He said, "they should". So, we will wait and see how that works out.

Secondly, we discussed the fact that the MRI meant to review my spine is a closed MRI. I'm very claustrophobic and anyone who is would understand being in a enclosed tunnel inches from your face for approximately an hour is more than mind over matter. They suggested sedating me with the same medicine they have been giving me that will knock me off my feet. Well....it hasn't phased me....but gives me wired energy. They don't have anything to offer. I'm going to have to try to find an open MRI. Steve is disappointed with me because the images aren't as good and he wants me to be sure we get the best care possible....I don't know what else to do???

The Medical Oncologist also explains that the neuropathy that typically comes with this chemo will kick in about 2 months into this process. It ranges from severe to mild. Each person is different. I'm praying that I'm the different and either have little/no side effects.

So far this treatment has only caused real bad back, leg and jaw pain. I didn't wake up nauseated like I did the last time. I took Vicodein for the pain and was able to sleep for once. Typically naroctics don't help me sleep but the days at Emory are very long and sad.

Most people are so sick. Many are wearing masks. Young and old alike. I always feel so strong, uplifted by all your prayers and then when I get there and look around, I start feeling teary-eyed. Not because of me....but because I hurt for all the sick ones around me. So many are there by themselves and here I have this awesome strong man sitting beside me, carrying my "diaper bag" with my blanket and junk and coaching me through....and there they sit without anyone....I can't help it...It makes me feel very sad.

Walking past all the aisles of people getting chemo (they say they see 100# people a day) makes me even more sad. Oh my....so many sick people. It makes me feel like I have a stubbed toe in comparison. I pray for these people.

On the upside, I so enjoyed having my Emory Clown, (aka Steve Boyd) with me. He had me laughing all day.

We were in the Medical Oncologist office and Steve decided that he needed to check my eardrums. He gets out the medical equipment and is in awe what you see, so he decides that I must also view his eardrums. Well....once you realize how awesome this equipment is....you must try the next piece....he gets the instrument they use to look into your eyes. He has it right up against my eye and his eye is right on the other side of the instument....as he is doctoring me....well, the Doctor slips right in the door and catches us in action. It was so funny, we started laughing and the doctor very seriously says, "enjoying the medical equipment" and gets straight to business. Well...it was still fun! :-) Steve didn't have time to diagnose anything but I'm sure next time he will.

As we were waiting to get into the Doctor, I looked over at Steve and noticed this stray eyebrow hair. I think I'm going to reach up and pull it quickly without anyone noticing. Steve decides to act like a clown and starts squinting and making faces and as I'm trying to very quickly make this go away. He gets me giggling as I'm trying to defeat this one little stray and Steve notices that this little "grandma" sitting a few rows over (no one else in the room) is not amused. For some unknown reason, it makes us start laughing even more. Poor "grandma" can't take it anymore and gets up and moves to the other side of the room. Steve has the bright idea that we should wait a few minutes and walk over to that side too! ha. Our buzzer goes off to see the doctor so everyone is saved! ha. By the way, this room is very large, "grandma" didn't look sick and we were really far enough away she didn't hear us giggling.....it was one of those moments that Steve told me NOT to blog about but I had to anyway. You have to find something funny to to talk about.

Onto the infusion room, Steve finds a non-Latex glove that is brown. This glove is huge. Steve decides to start blowing up the glove. My nurse comes over and I ask the nurse to remove Steve as he is being very disruptive. The nurse starts laughing and asks if he should send security. As we look over at Steve sitting innocently with the deflated glove in his hand, I can't help but remark, "see he even has stolen goods". The nurse thinks it is even funnier when Steve said he got the glove to work in his garden. Yeah right...we don't have a garden and can you see Steve, "oh honey come look at all our beautiful blossoms!".......somehow I can't wrap my brain around the picture.

Oh and speaking of stolen goods....Steve notices the neat container holding the barf bags on the wall and starts wondering how he could get it off the wall to take home and put in our bathroom. Wow, you can see how all the hours sitting in the hospital can turn a very sweet and innocent man into a thief. Just so you know, he would ask for one....he wouldn't steal but it sure was funny watching him eye it on the wall and remark the fact that we would even need one. ha. You can tell who has been taking care of me. Poor thing....thank you! I don't know what I would do without you here that is for sure!

So, in spite of all the things you go through....knowing I'll be back on Friday to go through all the waiting to yet again get my bag off....you can find fun. Steve made my day as delightful as possible and gave everyone something to laugh at too!

Your prayers are sustaining us through this process. Don't ever think we have it all together because believe me we do not. We need you! We thank you for all the prayers. Today is going to be another great day because of YOU!
Love you guys!
Leah

9 comments:

AET said...

You're an inspiration, Leah. You and your family are in my prayers daily.
~ Andy (your Mom's bald friend at work :)

Mother said...

Thank you thank you everyone for your prayers.... it is the only thing that is getting Leah through this.
Leah,
I am so glad that you are still able to keep your positive attitude even though you are going through the most difficult time of your life. Of course as your mother I see behind the scenes and really see the " real deal"......
but every day you get up and put your " game face" on and face the beast again. I admire you for that. You keep that beautiful smile on your face....
This song came to my mind as I read your blog..... I am thankful that you are still finding Sunshine in your shadows.

~~Sunshine In The Shadows~~

When our hearts are bound in sorrow
And it seems all help is gone
Jesus whispers do not falter
I will lead you not alone
Then somehow amidst my trials
How it is I cannot see
Then I hear a voice from heaven
Gently saying follow me

There is sunshine in the shadows
There is sunshine in the rain
There is sunshine in our sorrows
And our hearts are filled with pain
There is sunshine when we're burdened
There is sunshine when we pray
There is sunshine heavenly sunshine
Blessed sunshine all the way

I love you with all my heart.
Your mother

Steve said...

Good Morning,

You don't know how much I thought of MOM when I spent my time with Leah. She is so much like MOM as she doesn't let her feelings get in the way of the end and they both understood what was important. God, family and friends. Leah has such a sweet spirit and I enjoyed spending the afternoon with her. She was so relaxed. You raised a jewel. I know Leah understands her heritage.

I love you
Your uncle
Steve

Donna said...

I just have to find time to read this blog. It is so uplifting & encouraging. And, yes, even amusing. What a beautifully inventive way to pass the time when it could have been such a dreadfully long day. Not that it wasn't long, but your positive, upbeat outlook and compassion for the others that are there keeps you so focused on our wonderful Savior. I must say it is awesome to read such beautiful writings. It is one of the highlights of my day.
I am so thankful for the way God is strengthening you and helping you through all you are going through. He is a Wonderful Friend!

Love,
Donna

#1Fan said...

Leah, you made it today with a smile lady, and that wonderful husband of yours is your angel! I sat in chemo with a friend who had nobody else, so I know how depressing that can be. Sometimes people stray away, not because they don't love you, but because they are scared for you. Your circle of friends are not afraid, they are ready to fight this thing out with you. You are so loved, I can feel the love from way over here in Union City! I prayed for you today along with all the others, and I will continue to ask God to provide you with courage until you finish this stuff, then you will inspire somebody else. Who among us knows when we will have this struggle? You are a blessing to somebody. Sweet dreams sweetheart!

Anonymous said...

Leah and Steve
I love you both very much. You are always in my thoughts and prayers through out the day. Vickie

Angie said...

Leah,

I can see you and Steve laughing and carrying on like this. He can come up with some things, can't he?? Ya'll make me laugh just reading this and I was trying to picture you both today. I amd so glad that you two can break the tension with each other and keep pushing forward. Tell them awesome kids their aunt Angie says hello and I love them!! Keep doing what you got to do and we will continue to send the prayers up for all of you.

Love,
Angie

Ellie said...

Okay, when I went to read your blog today I didn't think I would end up laughing out loud. You and Steve are a trip!
Still praying for you!
Ellie

Anonymous said...

Hi Leah, I just noticed tonight (I'm not very observant) that I could comment....I want you to know that you are in my prayers every night and when you are on my mind during the day...you definetly are an inspiration....Love, great Aunt Cheryl