Tuesday, November 20, 2012

Chemo Treatment #1 Long Update

Sorry it took me a while to post this.  I finished writing it on a different computer and kept forgetting to email it to myself.

Tuesday, November 12 - Chemo Treatment #1
Going to work knowing that in 4 ½ hours your husband will undergo his first chemo treatment is very difficult.  I wasn’t sure what to expect during the treatment and all my uncertainties and questions were on repeat in my head all morning.  Donny told me ahead of time that he did some research and would be given 4 different drugs, but how?  And when?  And how will they hook up to his port?  Will he feel the drugs immediately?  Will it hurt?  How sick is Donny going to be afterwards?  How sick will he be later in the week?  When will he lose his hair?  I know we had talked to Donny’s friend who had gone through chemo, but even he said that every person is different, just like the nurses and Dr. P. said, health and strength depend on the patient.  So I still had a lot of questions.

I should have done more research online.  That seems to help Donny a lot.  But every time I go online I end up reading the bad stories that people post about how horrifying their experience was or how someone they know died.  I just can’t stomach that.  So, I went into this first treatment blind.  Well, maybe not blind.  I went into it with really blurry vision that only bifocals (or the actual chemo experience in this case) could cure. 

As I said Tuesday, the process itself was different than I imagined.  I guess I thought Donny would be ‘plugged in’ to an IV and sit there for 4 hours.  But it was much more involved than that.  Donny had labs done first, and then we got called back into the treatment room.  It was nice because we got a room all to ourselves.  All patients at Northwestern get their own rooms for treatment.  I thought this was standard, but Mrs. Gelsomino was saying that when her mom was in treatment, she was in one big open room with all the other patients being treated.  I can’t imagine that would be good for your psyche – seeing all the other people and how sick they look.  And what happens when they don’t show up one day?  You ask the nurse, “Where’s Betty, she’s always here at this time.”  And the nurse just looks at you with sadness in her eyes, and she doesn’t even need to say the words because you know Betty has passed away.  I’m VERY thankful for our private rooms.

Anyway, after we were taken to the room a nurse came by with the Mobile EKG Unit.  She asked us to leave the room so there wouldn’t be any distractions.  The test took about 15 minutes.  Mrs. Gel and I popped our heads in the room when the test was done and couldn’t help laughing a bit.  Donny was lying flat on the bed with no pillows with wires connected to his bare chest, neck, arms and legs.  He looked like the man in the game Operation.

After the EKG, our nurse, Cheryl, came back in the room to get the treatment started.  She explained each drug very thoroughly (see below for drug information) and discussed the large range of side effects for each of the 4 drugs:

Chemotherapy Drugs (click the links to read more about these drugs):
It looks like red Kool-Aid.  The nurse said this is the ‘bad one’ and if we remember just one thing about chemo, it should be that Donny received the red drug.  This drug is one of the worst ones and a person can only get a certain amount of it in his/her lifetime.  So if we move across the world and Donny gets sick, the most important thing to tell the doctors is that he had the red chemo drug at one point in his life. It’s one of the only drugs that is this color, so the doctors should know what we’re talking about.  Donny had the EKG and the Echo tests because of this drug.
Fun/Disturbing fact about Bleo (nick-name for this drug): This is the only drug that Lance Armstrong refused when he was going through chemo because it can cause severe breathing problems and/or cystic fibrosis.
Naturally, when the nurse told us this, I felt my heart skip a beat.  I was trying to stay composed because Donny and his mom were there and I just had to keep it together.  But in my head I was screaming, “Holy crap!  Are you kidding me?  Donny has horrible asthma and is allergic to pretty much everything, and this drug could make his breathing problems worse?  There’s no way he’s taking this drug – F this!”  Then the rational side of my brain chimed in and reminded me that this drug isn’t really negotiable if I want Donny to completely recover.  So I turned off the screaming and calmly told the nurse about Donny’s already bad breathing issues.  She smiled and said she knows, she read the charts and that most likely he’ll be fine, but she has to tell us about all the side effects.  Really helpful...thanks.  The pulmonary (lung) test that Donny had was for this drug.

This drug causes severe constipation which Donny has additional medication to prevent.  This drug can also cause Peripheral neuropathy (numbness of the hands and feet).

This drug isn’t too bad, the main side effect is nausea. Donny also has great anti-nausea pills to take to prevent the nausea.  Tingling of the hands and feet is also a side effect.  Donny did experience tingling in his right hand the first day, but it went away by Wednesday.

When Cheryl was done explaining the drugs, side effects and so on, she began administering the drugs.  The Bleo was administered first to make sure he didn’t have a reaction to it.  It was given through a syringe that she stuck in Donny’s upper arm.  The second was the Adriamycin that was administered through the port in Donny’s chest.  I apologize, I was so overwhelmed with the whole process that I forgot to take a picture of what the port looks like when the IVs are in it.  Next time...

It was strange watching the red Kool-Aid flow through the IV tube and into Donny’s chest.  If you came into the room late, you would have thought the nurse was giving Donny blood.  But it was the chemo, not blood.  As I’m writing this, I realized, the thing that was most different than I anticipated was the way the nurse administered the drugs.  I thought all the chemo would be in one IV bag that just hung there connected to Donny’s port.  But actually, the Bleo and the Adriamycin were administered manually through syringes (one with a needle in his arm, and one that connected to the IV in the port).  The other two were administered through IV bags.

All in all, it was a pretty simple process.  It didn’t take as long as I thought.  And they even left us with a packet of directions, all spelled out on when Donny needs to take which medications (he has additional prescriptions: anti-fungal, anti-bacterial anti-nausea, etc.) and directions on what to do if Donny experiences severe symptoms:

Call your doctor if:
Fever of 100.5 degrees or higher à Must go to ER
Uncontrolled nausea/vomiting/diarrhea
Pain or burning with urination
Develop sores/white coating in your mouth

Hopefully we won't have to call our doctor about any of these symptoms, but it's nice to have.

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