Monday, July 30, 2012

Chemo and Care Packages

"What is chemo like? Does it hurt?"

My 95-year-old mother asked me this recently during a telephone conversation.  Even after all these years, I realized that she didn't understand what my experience is like. So, I thought it might be a good idea to blog about this and share the information with others -- those who are newly diagnosed and facing chemo as well as their family & friends.

First of all, if you are a family member, let me encourage you to go along for the chemo treatments. It will give you a better understanding of what your family member is going through and your support to them will mean the world -- trust me! I've heard of many people who don't want to come because they think it's frightening or depressing. Well, please read my blog titled "Life isn't Always a Box of Chocolates" and put on your big girl panties!  Yes, some days it is sad to see the sick and hurting people there, but those are the times to thank the Lord for His mercies to you and say a prayer for these folks who need His healing touch.

I remember we were told that my husband could join me for my first session, but not after that. We politely ignored that rule and John has been with me for every treatment in the past 5 years.  Most of the other patients have a family member with them and they are a great encouragement, not only to the patients but also to other caregivers. The nurses are happy to accommodate them and we "regulars" are like family to each other!

But back to the chemo. After you get situated in your recliner, the nurse will start your IV. If you can arrange it with your insurance, see if they will allow them to draw your blood for your lab tests at this time. It will save you an extra trip to the blood lab earlier in the week and one less needle in your life.  Some folks are quite anxious about that needle, but be assured that these chemo nurses are very good at what they do.  I even had one nurse start my IV by flashlight when we had a power failure!  For the first year of weekly treatments, I had regular IV's and the veins in my arm got pretty worn out. I have since gotten a port put in to my chest which is practically painless and very convenient -- I highly recommend it!

Usually the first medication they will give you is benedryl, to help protect you from an allergic reaction. Most everyone falls asleep, at least for a little while. Sometimes I'll go home and nap for 4 or 5 hours afterward.  You may also receive a corticosteroid which also helps reduce allergic reaction, may relieve nausea, and helps your chemo medicine work better.  This usually makes me a bit jumpy, like I've had too many cups of coffee.  Sometimes I will have trouble sleeping  the night after, but it will pass.

Ask if you can get some IV medication for nausea (in addition to a prescription for pills to take at home later as needed). These usually work GREAT and it is best to cut this problem off at the pass.  Each medication will take anywhere from 30 minutes to a couple of hours to administer.  I always ask the nurse about the medication every time she changes it to a new "bag." Then I watch the drip, drip, drip and I ask the Lord to bless each drop of medicine as it goes into my body. You can check the monitor to see how many more minutes you have for each medicine.

The medicines are usually cold, or at least colder than your body temperature, and it tends to make you cold as the treatment goes along. They can usually give you a pillow and a blanket to make you comfortable, or you might want to bring your own.  The treatment itself is not painful and any side effects you may get don't usually start until at least several days later. Everyone's experience will be different, but personally I have found that side effects are pretty manageable and not as horrible as I had imagined. They have lots of drugs to treat various side effects, so don't hesitate to ask for help! There are also a lot of natural remedies so ask about those too. Talk to other patients for their suggestions.

One time I was seated next to a nice lady who was receiving her first treatment and was quite nervous. I tried to tell her a little about what to expect and reassure her that she'd be just fine. A short while later I started to have an anaphylactic reaction to one of my medications (throat swelling shut, etc., etc.) and there was quite a commotion! The nurses quickly jumped into action, administered some epinephrine and soon I was fine. That was scary, but was quite rare -- I've never seen it happen to anyone else. I never saw that lady again and unfortunately I'm quite sure I gave her a good scare.

After the treatment, I feel kind of "wiped out." It's hard to describe, but I just feel like my blood has been diluted (which it has!). Plan to rest the rest of the day.

A few years ago when I found out that my cousin would be going through chemo herself, I wanted to do something to help but she was 3,000 miles away. So I thought about what items were helpful to me during my treatments and put together a "care package" to send her. I included things like a few knit caps, a good book, a devotional, a scarf, neck pillow, some ginger tea, hand sanitizer, an MP3 player, etc.

Then I started hearing of more and more women being diagnosed. So I started sending out care packages to everyone I heard of. I have always found that the support and helpful advice from other survivors has meant the most to me, so I wanted to extend that same support to others. Sort of "pay it forward!"

If you have any suggestions or items to donate for care packages, please let me know. Also, contact me with anyone newly diagnosed who could use a care package.

2 comments:

  1. Erin, as the recipient of one of your care packages, I just can't begin to tell you how much I enjoyed all the items in that overflowing box. This past winter when I had no hair and it got rather coolish inside the house at nighttime, some of those knitted caps sure kept my head warm.

    Just the other day my friend Teresita, another recipient of your generosity, told me how she looks forward each and every day to reading daily devotions from Sarah Young's book, Jesus Calling. Teresita said those readings got her through her breast cancer ups and downs. When I met up with her, she was also wearing the bracelet and she said that's a regular part of her jewelry these days.

    I mentioned the knitted caps, but another item in your care package is that spongy pillow...I think they refer to it as a collar. That has gotten me through countless sleepless nights and most recently, on a long road trip, was a great cushion under my knees.

    Your generosity is indeed a gift from on high, Erin. I'm sure all of us who have been "gifted" from you have had our aches, pains, concerns, lessened immensely.

    Earllier today I sent your current blog on to the three infusion nurses at Geisinger who truly deserve all the accolades you mentioned. They are indeed very special women. They were such a sorce of comfort and reassurance to me during some pretty scary times.

    All of your blogs are so inspirational, Erin. Keep up the wonderful writings!

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  2. Thank you for such a honest and hopeful post Erin. I will not be afraid although I am sure I will be anxious. Let the fight begin!

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