The Long Road... #2014reboot

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Sunday, July 4, 2010

#213: Side Effects

Shakes. That's what I've got today. One of the drugs that comes with my chemo treatments is a steroid that tastes like peaches. I think that's the one, anyway. It really hypes me up. This is a good thing. One of my friends warned me that the steroids turned him into a real jerk. They just make me annoying. I finally wore Mrs P out with my fidgeting and chatter so she put herself down for a nap. I'm typing, but my hands are really shaking. Don't think I could handle a teaspoon full of soup right now.

I've been very lucky with side effects. I appear to have a sunburn from my cheeks down to the middle of my chest. That's from the radiation. Also the mucosa thingy I've described. Nothing earth shattering. Fungal and other biotic infections that are pretty quickly killed off. Oh, and everything tastes like dog butt.

My chemo drug is called Cisplatin. It's a pretty old drug, but still effective. The list of side effects is daunting. I've had only the highlighted ones.

•Nephrotoxicity - causes damage to the kidneys

•Neurotoxicity - causes damage to the nerves
•Nausea and vomiting - one of the most likely to cause severe nausea and vomiting
•Ototoxicity - hearing loss which is currently not treatable
•Alopecia - hair loss, not a common side effect
•Electrolyte imbalance - causes various problems with cell operation
•Decrease of blood cells in bone marrow
•Thrombocytopenia (low blood platelet count)
•Leucopenia (low white blood cell count)
•Myelosuppression (decrease in bone marrow effectiveness)
•Changes in how food tastes
•Frequent diarrhea
•Numbness in the extremeties
•Extreme fatigue
 
Today I went back into the infusion center to get a shot of something whose name I didn't catch. Grace, who only called me "Hon," today - I was a little disappointed - told me the name then mentioned that the syringe full she was about to give me cost $6800. I kind of blacked out after that. The drug is intended to boost the functioning of my bone marrow and to get my white blood cells back in business. Grace really is a good nurse and an artist with a needle. I fled absolutely nothing as she stuck me in the left triceps and injected the mystery drug. Some people tolerate it pretty well. Others develop flu-like symptoms including aches that may be severe enough to require breaking out the Percocet. I don't want to be sick tomorrow. I want to go to the park to see The Merchant of Venice tomorrow night. That's the final dress rehearsal and I'm trying to avoid the really big crowds later in the week. Cancer is all about adjusting. And watching Shakespeare stoned isn't the worst thing in the world. I can think of several productions I've seen that would have been greatly improved by a few pain killers.

We took a trip to the Wal-Mart today. I prefer Meijer, but didn't feel up to the cross-town drive. Since we needed both groceries and medical supplies, we sort of walked cross-town instead. Water was in one corner of the store. Isopropyl alcohol and Ensure was in the opposite corner. Naturally there is no path "as the crow flies" from one end of the store to the other so we went arooooound. Twice. By the time we hit the check out line, I was pretty beat. We had a coupon for Ensure which our cashier forgot to scan. She looked pretty lost when we pointed it out, so we volunteered to go over to the customer service desk. Since that's my station at Meijer, I spent the whole time critiquing the disorder and the cool behavior of the person behind the desk. I would have treated us much better. Just sayin'.

Back home then, a two can tube feeding, and here to chat with you for a while. Someone posted a great scripture on the Motley Fool today. I loved it so much that I put it in my bio on this blog. I'll close with it.

We are afflicted in every way, but not crushed; perplexed, but not driven to despair. - 2 Corinthians 4:8

AMEN!
Peace,
pennsy

5 comments:

  1. I appreciated the scripture from CF today as well. It really spoke to me and to John and 2 of the kids that are at home with us.

    We went out to Denny's last night. John just had to get out but he really isn't supposed to be around crowds, eat any raw fruits or veggies and wear an accordion mask and nitrile gloves. It was the first time he had ever asked if those that prepare and plate the food wear gloves and he was assured that they do. We didn't arrive until after 8:30pm figuring that we would miss most of the crowd and we almost had the place to ourselves. There were only four other customers so it was pretty nice.

    John decided to get the senior dinner of chicken-fried steak, corn and green beans. Instead of soup or salad he had a very small bowl of applesauce. He was full after half the dinner but he forced himself to eat it slowly and he did pretty well. Too bad that it didn't stay down.

    My oldest daughter is making BBQ chicken, mac&cheese and baked beans for dinner. She is topping it off with her famous patriotic ice cream cake that she lovingly prepares each year we are together. I made John a 2 egg omelet with small pieces of ham and no cheese. That was all he thought he could handle and then he went to bed about 15 minutes ago. I will not wake him up when supper is ready because he has such trouble sleeping.

    He shaved off the last of his mustache and goatee today. His head was shaved on Wednesday since he was losing so much hair and he decided the rest would go as well. It was thinning so much that you could totally make out every line of his face underneath the white hair. He commented to me that now he could understand why I said he looked gaunt. It is very obvious now.

    He is contacting the doctor's office in the morning because of some other side effects and that some of the meds don't seem to be working. Then we leave for St. Louis around 5pm (5 hour drive) to take our some to see a specialist first thing Tuesday morning. The last doctor from 4 days ago didn't seem to have any ideas and had never seen this problem before. That made doctor #8 or 9 so far. If this specialist doesn't know what to do them I am very tempted to move back to California in the midst of all this just so he can be seen by UCSD medical center, Orange County Children's Hospital or a few others that seem to be on the cutting edge of things.

    My dear, dear small church (Avondale Baptist) has been there every step of the way. Cards arrive during the week. Dinners are made and brought over and Darlyne's special home made chicken soup was given to me after church today.

    They are going to come and strip wallpaper and lay down the last of the entry ceramic tile that John just has not been able to get to and won't be doing in the future. This will be a surprise for him when we return from the San Diego Improv Competition. John so wants to be the strong man again and he has refused many offers of help but he just will not be able to finish the projects. That will help us get ready to rent it out so that we can focus on my husband, son and how to get them well ...... or as physically better as they can.

    Thanks for taking the time to journal your journey. It means a lot that I can read about you each day.


    Robyn

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  2. Darn ...... I wrote you about what was happening with us and I clicked to post and was told it was too large to process. I clicked the "back button" and it erased everything.

    Maybe I will rewrite some tomorrow. In the meantime thanks for journaling your journey. I look forward to reading it each day.

    Robyn

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  3. Oh goodness, there it is! Yay!!!!

    Big loving hug to Mrs. P for her devotion to you.

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  4. Robyn, I'm so glad your post got through. I really love hearing about John and Paul. I'm sorry he's having such a rough time, much worse than I. I would encourage him to allow people to help. The love that has been extended to us has helped to lift me up so much. And the people who love us are frustrated by not being able to do more. It's a strange kind of ministry, allowing others to give to you, but it is a kindness that's easy to extend. Love and prayers to you all, as always...bob

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  5. You got Neulasta (given the cost you quote). That's one of the two drugs I asked you about a week or so ago and wondered if you had gotten it. :-)

    ~kim benson

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