Good morning! I thought what I might do is keep sort of a running diary for each day. It will make it easier to remember that way what happened when.
June 16,2014 Monday
Monday morning I went to work like normal, as I wasn’t going to receive the call from the hospital about coming in till almost noon. Beside, I’d left stuff at work rather in need of a final wrapping up that I scrambled to complete that morning.
The hospital called at 11 and said they had a bed ready and that I was supposed to get in there as quickly as I could. So then I really put it into high gear, racing to complete the absolute necessities before heading home for lunch and to pack up for the hospital. We arrived at Hershey Medical Center around 2:45 pm. We were told to come directly to the 7th floor cancer in patient unit, rather than going through all the admissions stuff at the front desk first. (We, meaning Mom and I. Mom arrived at my place Sunday night to remain as long as I need her.)
So, I moved into my hospital room, bag and baggage. I told Mom that I always thought it was funny to see people at the hospital who are carrying bags, and obviously moving in for an extended stay, but they usually don’t look sick, so you wonder why they need a hospital. Now here I am one of those myself!
First steps was for the nurses to come in and introduce themselves, then prep me to receive IV by accessing my port with a needle. Dr. Rybka’s nurse and one of his colleagues stopped by my room with some papers for me to sign and to briefly review the schedule of the next few weeks with me. Dr. Rybka himself is still out of town. Those papers told me all about the side effects, which would be enough to scare anyone! More on that later.
While they were there, Dr. Garg, the hematology/oncology fellow, who is overseeing the patients on the 7th floor, stopped in and introduced himself as well.
The nurse had trouble accessing my port with the needle, so she called in a 2nd nurse who managed to access correctly on the first try and get a good blood return. Just as they drew labs (blood for blood tests), transport arrived to take me to ground floor radiology for my CAT scan at 5. Supper had already arrived, and I was starved, but nothing doing! So I had to let it sit while I left for a CAT scan.
The blood tests and CAT scan are both routine for a procedure like this. They do blood tests to verify that my blood counts are all good and that I can receive chemo. The CAT scan was done to get a baseline of comparison. After these first two chemo treatments, they will do a 2nd CAT scan to see what the chemo did to the mass, if anything. If it hasn’t changed in size at all, or God forbid, it even grew, then that means my lymphoma is no longer chemo sensitive and there is no point in continuing with the high dose chemo and stem cell transplant because more or higher dose chemotherapy wouldn’t do anything more.
Finally, I came back from my CAT scan and could eat my supper. By then it was nearly 6, so they decided to not start my chemo Monday night and just wait until Tuesday. So I just relaxed in my room, answered some emails and texts, washed my hair, and soon went to bed. Aside from being tethered to my IV pole that was dripping in a saline solution to make sure I stay hydrated, I felt like I was on vacation!
I had a great night Monday night, aside from the normal hospital routines of being awakened to get vitals, labs, or whatever. I think it is ironic that when you are sick and need your sleep the most, you get woke up the most. Ugh.
June 17, 2014 Tuesday
Chemo day #1! I started off my morning still feeling like I was on vacation! Breakfast in bed, a quiet time with God in my hospital room to gather strength for the day, tramps up and down the hall with my friend the IV pole (I named him Frankenstein. I know, I know, kind of a twisted sense of humor, but it seems to fit!). When I found a keyboard in the lounge at the end of the hall, I was in heaven! So I sat there awhile and played as many songs as I could by memory. I’ve told Mom to bring a songbook in for me so I can play even more songs.
Once Mom arrived after 11 with my work computer, I fired it up and logged on for a little. Chemo started off at around 12 with the drug Rituxan. Everything seems to take forever at the hospital. The doctor has to be consulted, and the order has to be put in, and on and on. Mom said the only time they hurry at the hospital is when you’re close to dying. I think I agree!
Here goes for a brief description of the chemo. I will try to keep the medical stuff simple. The chemo is called R-ICE, each letter standing for one of the drugs used. So four chemo drugs are used in this specific chemo regimen. However, they use many other drugs either alongside or before or after the use of each drug to minimize side effects.
The first “drug” I received is not, strictly speaking, a drug. Rituxan is an antibody. It works just like a normal antibody in your own body. Antibodies recognizes antigens (bad cells or germs) and attach themselves to those antigens, marking the antigens for destruction by the immune system. The body does not have antibodies as such for cancer.
Scientists have discovered certain antigens on cancer cells, and then created antibodies that specifically fit those antigens. Rituxan is an antibody that targets the specific antigens on the B-cell lymphocytes (which are the cancer cells in B cell lymphoma), marking them for destruction by my immune system. As a result, much less harm is done to non-cancerous cells. From my understanding, the discovery and creation of Rituxan has greatly increased survival rates for non-Hodgkin’s lymphoma in the past few years.
The biggest concern with Rituxan is that a lot of people have an allergic reaction to it the first time. I had received Rituxan before during my 1st rounds of chemo 2 years ago. I had had a slight reaction to it the first time I received it, but nothing serious. So we didn’t expect a lot of problems. They start dripping slowly into your IV to see how well you tolerate it, then up it slowly. So they started me at 25 milliliters/hour. When I was fine on that for a half hour, they upped me to 50.
Shortly after they upped it, my throat started hurting badly and swelling rapidly. When I rang for the nurse and told her I thought I was having reaction, she got in here fast! This was one time when they did move quickly. They had given me some Benadryl and Tylenol before starting the Rituxan, but skipped the steroid Decadron because I had handled it well previously. Well, they promptly injected Decadron and another dose of Benadryl, plus stopped the Rituxan infusion for awhile.
That dose of Benadryl must have been a doozy! The room immediately started spinning and soon I felt like I was flying! However, they knew and I knew that they had to get that in fast to stop the reaction, other my throat would have swelled shut. Soon the 2nd part of the reaction set in, and I started shaking uncontrollably with chills and muscle spasms. So they injected Demerol, a narcotic pain killer that also relaxes the muscles. Soon I felt like I was in never, never land, just floating away somewhere. It took a little to kick in, but soon the shakes stopped, and I just felt terribly sleepy. However, my temperature started climbing.
They waited until nearly 5 to restart the Rituxan infusion because they wanted to wait until all the allergic reactions were gone. They started me slowly again, then upped it once again to 50. This time I handled it just fine. Normally they would up the speed every half hour so it drips in faster, but because of my reaction they left the speed at 50.
All is well that ends well, but it wasn’t much fun while it lasted! We’ll know for next time what steps to take before the infusion so we can keep the reaction to a minimum. Everyone is different, so it’s hard to predict how it will go. It did remind me how much I hate drugs like painkillers. They alter the consciousness so much, and I can’t think straight. That’s why earlier in the day when the nurse asked what my tolerance level is for pain on a scale of 1-10, I told her at least an 8. In other words, the pain has to be really, really bad before I will ask for a painkiller because the painkillers are worse than the pain! Of course, this time I didn’t have a choice because we had to get my reaction under control.
The Rituxan finished dripping in by 10:30 pm. After 11pm they started me on the Etoposide, the E portion of the word R-ICE. This is called a plant-based alkaloid. This specific drug is derived from the May apple plant, and messes with the DNA that controls cell replication. In other words, it keeps the cancer cells (and many good cells) from dividing. Basically, that is what cancer is: rogue cells that keep dividing long after they should have stopped.
That took only an hour to drip in. Because the Rituxan took so much longer than normal, that does mean that it pushes everything else off too, as they have to wait a certain amount of time before infusing certain drugs. I had a good night Tuesday night in spite of the necessary disturbances.
June 18, 2014 Wednesday
This morning I was back in vacation mode. They can’t give me my 2nd dose of etoposide until 7 tonight, so that means I get a nice long break! I felt a little weak and shaky this morning, probably the aftermath of all the drugs I had pumped into my system. But I managed to shower and then go on my morning walk to the lounge to play on the keyboard.
My quiet time inspiration this morning came from Hebrews 5:8-9 “Though he were a Son, yet learned he obedience by the things which he suffered; And being made perfect, he became the author of eternal salvation unto all them that obey him.” Even a hospital room can become a cathedral when the presence of God is there. The presence of God is very close to me these days. Sometimes I can almost hear the whisper of guardian angel wings.
My prayer yesterday morning was that even here I want to serve. I was crying yesterday morning at all the ways I was planning on serving God and others and how it was all stopped abruptly. But then I thought, Even if I can’t go to college right now and get the training I wanted to to serve, here in small ways, I can be a small picture of the God I love to those around me. If I can cause one person here to think of Him, that is more than enough.
I get three doses of etoposide, one each day, so I will need to get a dose of that tomorrow at 3 pm, as the doses are 20 hours apart. Tonight, once they`ve finished with the etoposide, they will start the carboplatin and the ifosfamide, the other two chemo drugs in this chemo regimen. The carboplatin and the ifosfamide will drip in at the same time. The carboplatin takes only an hour. The ifosfamide is a 24 hour continuous infusion. So if they start that at 9pm tonight, that will not complete until 9 pm Thursday night. So that means I will definitely not be discharged until Friday morning at the earliest. That’s only if all goes well.
As far as side effects go, both the etoposide and carboplatin have the normal side effects that go with chemo: hair loss, nausea, low blood cell counts. Carboplatin can more rarely result in kidney and/or liver problems, as well as neuropathy (numbness and tingling) in the hands and feet, diarrhea or constipation, and mouth sores. I had neuropathy the last time I had chemo so that would be nothing new. All chemo drugs are more or less hard on the liver and kidneys because they are working overtime to rid your bood and body of the poisons.
Ifosfamide is especially hard on the kidneys and bladder, so they keep a close eye out for blood in the urine. They mix ifosfamide with a chemoprotective drug called mesna which decreases the danger to the bladder.
I will need to come in 24 hours after discharge to receive a neulasta shot to keep my white blood cell counts from going to low. I hate those shots because they make me feel miserable, but so be it I guess. I will also need to get a blood test done every 2-3 days so they can measure my blood cell counts closely. Since this is a much stronger chemo, its much harder on the blood cells.
So far my counts are good, and so far I have good appetite and no nausea. Sure do hope it stays that way!
The other day I learned a new song. I had been hunting for the perfect song to be my inspiration through chemo. I knew it had to be something upbeat. Well, this song is it. Its lighthearted and hopeful. Lighthearted songs don’t always carry the most meaning for me, but this one just fits at this point in my life. I especially like the 2nd verse. 🙂 I’m going to do my best to keep my feet dancing all the way! (Figuratively, of course). For after all, who can despair when all hope is mine because of God. Below are the lyrics.
I’m gonna sing just as long as it takes for a song
To make sad heavy spirits free.
I’m gonna keep making music that carries the secret
That Jesus is liberty.
I’m gonna turn off the sounds that’ll drag people down
To the pit of despondency
With the sweet happy tune He is coming soon
For His children like you and me.
It’s a song that’ll carry a message along
Through the densest of foggy nights,
And a tune is a rope that will throw a man hope
When he’s going down for the third time.
It’s a sweet melody that can cut your heart free
From the chains of a past defeat.
You can suddenly see through the sweet harmony
A path for your wandering feet.
Repeat of the chorus (song starts with the chorus)
Don’t tell me the world is a hopeless old place
And I might just as well give in
To the doom and gloom–Life’s a waiting room
For the blow that will do us all in.
I can’t sympathize when before my eyes
Is a hope shining bright as day.
I gotta follow the song that keeps drawing me on
With my feet dancing all the way!
Okay. I’d better sign off. This was typed from my bed at the hospital. My lunch came awhile ago, but I wanted to get this done first. I’d better eat it before it gets too cold! I’m going to keep dancing!
God is good.