Another Update

Note from Erin: I'm going back and posting from Dad's original emails, so you can catch up. The actual first date of this blog was in January 2015.

Update 04162014

Guy Version

Chemo was delayed one week as my WBC was too low. So gave me another week to eat ice cream. And also felt very good for most part.

The challenge this past week was that my fingers and thumbs started peeling (after the intense swelling and redness after the previous chemo), and the new skin underneath was horribly painful.

Discovered on Friday I am NOT supposed to take a shower while on the chemo pump. I will swear that they told me it was ok. No ill effects so far from doing it wrong! So I did it again, but more carefully.

I have been to work every day, although lighter load of clients than usual. But this past week saw 20 clients (I was at a workshop recently in which they discussed how 15 was average- I consider that a slow week.)

Chemo has not been fun, but not as bad as Joyce and I feared. I expected a great deal of feeling sick and nausea. However, that has been kept very much under control as I get anti-nausea IV before the chemo starts.

Gal Version

It has been a while since the last update on March 26. The swollen red hands lasted several days and then my skin started shedding. I sort of felt like a snake shedding it's skin. The thumbs and index fingers were the worst. The skins would not flake off but had to be cut off. And then the newly exposed skin on the thumb and fingers were incredibly painful for several days. They are better by now. Learned that 5FU, one of the anti-cancer drugs was responsible for that.

I was scheduled to have chemo again on April 4^th, but my White Blood Count was low and chemo was postponed a week. Of course I want my cancer treated, but it was wonderful to go an extra week between Chemo. I typically feel reasonably good by 6 days after chemo. So this was great to have over two weeks in which I was feeling pretty good. I saw 20 clients that week. (I have been to work every day since chemo started, but Joyce has tried to arrange the schedule so I have more time to rest during the day.) Our clients have been amazingly supportive, helpful, and being willing to re-arrange appointments and staying home when they are sick.

So I had chemo this past Friday. Normally it is a very quiet place. But this time people were waiting for a chair to do chemo, and it was noisy. Not near as relaxing. Went shopping at Kohl's on the way home. I had good energy on Saturday and Sunday while hooked to the portable pump. On Saturday Joyce and I visited her Aunt Jean and Uncle Jerry of Pumpkin Farm Fame in Milford. Had a great visit. A couple of Joyce's stopped by and had a good visit with them as well. And Aunt Jean pampered us as usual, with roasted chicken, and peach pie. Decided that since I don't feel like doing too much I could rest there as well as anywhere. 

Tuesday and today (April 16), I have had some mild soreness in my mouth. The good news is I got a prescription for “Magic Mouth Wash” It is designed to swish and swallow. It is designed to use before meals, so that you have minimal pain while trying to eat. And it can also coat your esophagus as well. It has lidocane, so I get a while with little to no mouth pain. (Yes there really is “magic mouthwash” which is compounded at the pharmacy according to my oncologist's formula.)

Even though I went 3 weeks without chemo, the sensitivity to cold diminished, but never went totally away. However, the mouth sensitivity goes away much sooner than touch. So I could eat ice cream and tolerate cold drinks for about 8-10 days.

As I had blood work on the April 4^th when my chemo was postponed, I had another CEA report.

Nurse Milissa called me on Tuesday to tell me my CEA count was lower again. It is a sign there is a a high probability that the treatment is working well

Regarding the CEA, any score above a 2 is a concern. So mine were as follows:

\February 6   CEA 924 (Chemo started on February 21)

March 21  CEA 152

April 4: CEA 64

Joyce sister, Becky, worked as a oncology nurse for many years, first at OSU where she worked with Dr. James (James cancer center now well known). And she continued to work oncology after her move to California. She did not tell us at the time, but she had hoped the CEA would drop by half. Fortunately it has been much more than that.

Joyce and I appreciate all of your support and prayers. One of Joyce's friends told her, “Remember the airplane rule. Put on your own mask first before you try to help others.” That has been helpful for Joyce to try to remember to take time to take care of herself.

John E. Swank