Blessed, but Threatened

I iced, and have a tiny bit of it in my big toe. A stabbing pain once in a while. Also, initially when you ice it is a shock but it quickly subsides. I did not mind it at all other than an inconvenience and I am very cold sensitive. Years ago I had very painful plantar fasciitis that I used an ice water foot bath to cure, so I knew that the initial cold shock goes away in a few minutes. What sold me is that I read some of our former sisters here talking about their neuropathy issues and I knew I would do anything to avoid what they were going through. I also have had bad arthritis in my hands/wrists for many years which has limited my ability to use them so I really didn't want to add neuropathy if I could help it. Hope this helps.

Denise

I am a type 2 diabetic and I also had a previous RCHOP chemo for Non Hodgkins Lymphoma in 2013 so it is hard to say when my neuropathy first started. I will say the neuropathy in my hands was worse during taxol/Carboplatin chemo but it subsided first. In about 3 months post chemo. The neuropathy in my feet began all over but remains in my toes only and that is occasionally. I am blessed!

Hello Nettie, I was diagnosed with serous endometrial stage 2 in 8/2020- had surgery and started chemo from October 2020 through February 2021 and I had vaginal brachytherapy between the chemo sessions. My husband was also only allowed to be with me for the first treatment, otherwise I was alone . I found the nurses to be very compassionate and they seemed to try to make an extra effort to make me feel more comfortable. In the end, my motto also was "it is what it is". I used ice socks and frozen water bottles for the hands, and I do not have neuropathy, for that I am truly thankful. My husband and I stayed away from everyone the entire time , he would take me for rides but we didn't get out of the car. He did the shopping once a week, in the early morning at Walmart when they allowed older and disabled people only. He avoided everyone and wore 2 masks. I had medical visits via tele visits, the only in person care was the chemo and the radiation. We attended church via the internet. It wasn't fun but I made it. I am now almost a year out and last CT 12/2021 was NED. Next CT's in March, I feel fine and anticipate a clean bill of health. God bless and keep you in His care, you will be in my prayers.

Nettie,

I have never think of myself as inspirational. Read some of my posts and you will see I can be a bundle of Anxiety. "So far, so good!" This is the quote from my oncologists that I hold fast to.

I have been through much the same cancer journey as our fellow sisters on this site, certainly less strife than many others. I have minimal lasting side effects so I feel very blessed. You will have your own story and others will learn from it.

I did not have any problem with eating or my blood sugars during carboplatin/taxol treatment but nausea was not a problem for me and I took Lorazepam. I hope it is the same for you.

I don’t see that having some ice paks or bringing frozen water bottles is much more work for the nurses. I think if someone does the cold capping to try to save their hair, that adds a little work. Plus I don’t think insurance covers that usually, so out of pocket it can be pretty spendy!

Hi, Nettie!

I started a thread after my first infusion. If you’re interested, you can search on the Uterine Board (bar at top of opening page) “Waiting of the other shoe to drop.” (It was a typo! I meant for it to read, “Waiting for* the other….” ). Anyway, that thread pretty much tells the story of my chemo experience, and might be informative for you because of all the support and replies!

I did write some about my cold-capping. Most of the ladies here chose not to try it. As Cheryl said, it’s a personal decision. There are several different systems. The one most easily available to me was a company out of Houston and the day before each infusion they delivered an ice chest (on rollers, thank goodness!) to my front door with 60lbs of dry ice and 6 gel-filled “caps.” They have to be changed out every 30 minutes and so rotated in & out of that ice chest…while wearing gloves cuz their ideal temperature is -22 degrees (Fahrenheit). Put one on an hour before drugs drip and keep switching out for 4-8 hrs post- infusion….I usually lasted 6. The longer the better. More then once traffic was bad enough that we pulled over twice on the way home to get a fresh cap.

How was it? Tortuous. Would I do it again? As I wrote somewhere here very recently, Yes, but I would be very unhappy about it. Some people get migraines, and that would have been a deal-breaker for me. For me it created pretty intense nausea. And with each infusion, and a little more hair loss, the time I felt nauseous went from 5-10 minutes to almost 20 by round 5-6. Then time for a fresh cap and here we go again.

So, WHY??? Why would I do that to myself? 2 goals: 1) I didn’t want to be bald. I had and recovered from open-heart surgery 7 years ago. It was tough, very tough. But when I looked in the mirror I looked like me. I just couldn’t imagine going through this AND being bald. It horrified me. 2) Even at 65 (when this started) I had a fabulous full head of hair. I was blessed with good genes. So, I wanted MY hair back when it was over. Even when it was obvious that it wasn’t being as successful as I had hoped, I continued to preserve hair follicles. And I looked at it like this: 6 days. 6 days of misery to preserve what I hope is 365 X many years! At the end of the first one: 1 down, 5 to go…..then 5 down, 1 to go. Fortitude? Stubbornness? Something I could choose to control? Probably all and more.

As to chemo nurses doing extra work, mine was fabulous. A true sweetheart. I didn’t need help with the mittens & booties, but she helped me anyway. Because my husband couldn’t help with the cold-capping, she did all that, too. I repeatedly bought her generous VISA gift cards, but I did that because I wanted to. She helped me because she’s a wonderful person and she wanted to help me! I think most chemo nurses are that way. That’s a TOUGH job….they have to be kind, helpful people or they couldn’t stand it.

An aside…..And I’ve known some who weren’t nice! My heart surgeon’s nurse was so mean, nasty, and downright awful, when she gave me her phone number I entered her in my contact list as “Nurse Ratched.” Every time she called it made me laugh!

I know you will be good! And you have so much support here!

❤️, Alicia