John Health Update 04/24 and 4/28

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.

 From the Desk of John Swank

Update Friday, 04/24/2014

Guy Version

I brought my computer to chemo today. I thought I would get an update out and use my chemo-time for that purpose.

Only wrinkle during the last two weeks was nosebleeds. After three in one day, the oncology nurse thought I should go to ER. Folks at Kettering ER were great.  Cauterized the place in my nose that was bleeding, and no problems since. I had some problems prior to chemo- so chemo exacerbated it.

Started participation in an OSU cancer study to see if I have a genetic type cancer (Lynch Syndrome) that is associated with colon and uterine cancer. I gave them my saliva and blood.

Overall, have been feeling pretty good. I am learning the art of “comb-overs” as my hair is getting incredibly thin.

Your love, concern, prayers and support are deeply appreciated.

Gal Version

A family from our church came  Saturday before Easter (Keith and Tina Jones and sons Garrett and Darren) and spent a few hours helping Joyce get the outdoor yard in shape. Mowing, raking leaves, cleaning out flower beds. My energy doesn't last as long as I think it will.

Today, started the process of participating in a colon cancer study by OSU.  About 10% of colon cancers are genetic, so they are doing genetic screening and then if the first step is positive they then do the full genetic testings.(about $5000 worth of testing!) If I do have “Lynch Syndrome” then they will inform me, and then let close relatives (siblings, children) know the results. Results won't be known for about 3 months. 

Saw Dr. Lavelle today, and he was very optimistic that the chemo was working. He stated that we would do a CEA at the next chemo, and then do a PET scan about mid May. He has a good hunch that the PET scan will show great improvement.

Monday, April 28, 2014:

The chemo this round has caused extremely sensitive hands and feet. (Hand and Foot Disorder caused by 5FU, the chemo I get with the pump.) So after that the pump is finished on Sunday evening the side effects kick in.  This time it has been incredibly painful. Doing small things, like buttons and zippers and pulling on a knob are terrible. For example, the hardest part of doing the mowing was turning on the key!

Slept almost 12 hours last night. When I was asleep the hands did not hurt!  Joyce finally reminded me this a.m. that I do have Oxycodone for pain.  When you are in the middle of pain it is hard to remember what you know and need to do. So I have been feeling better this afternoon. 

Overall, have been feeling pretty good. I am learning the art of “comb-overs” as my hair is getting incredibly thin.

John E. Swank

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

Update 04/05/2014

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.

Guy Version

No Treatment on April 4^th. White blood count (WBC) was too low and they want me to wait until next Friday. So I get a bonus week of feeling pretty decent. And more ice cream as the sensitivity to cold is not so bad.

The challenge this cycle was swollen and cracking hands (bright red) on Sunday and Monday after chemo. Also discovered that my anti-nausea medication had extreme sedating properties. So switching to another one.

I have been putting stuff on Ebay to sell. The big pleasant surprise was a 9 “ wooden level that would have brought a buck at a garage sale . I listed it for $30 and sold it for $222 since it had the name of a lightning rod company on it.

Joyce and I were talking. Chemo has not been fun, but it is not as bad as we feared.

Gal Version

We were surprised when we went down for a chemo treatment on Friday that I didn't end up getting one. They checked my WBC determined that I should wait. I am waiting until next Friday to keep it on a Friday schedule. (Could have gone in Tuesday, but then would have to have chemo on every other Tuesday, which would be a real hassle for our schedule.

I have learned that I can not predict what will happen immediately after chemo. the challenge this time was severe redness and swelling on both hands. I had mirror image patterns of redness and swelling on each hand. No specific treatment other than using lots of bag balm and wearing gloves. The knuckle areas got rough and have split open. I have found out that “Bag Balm” helps with cracks and roughness.

Mouth sores have been minimal this time as I know better how to treat it, and also I got a prescription of “Magic Mouthwash” that had to be compounded at the pharmacy. It has a numbing agent in it, so swish and then swallow. But haven't used it that much.

I tried to eat an ice cream cone earlier in the week, and that was extremely painful. But I slowly ate it anyway!

The Tuesday after chemo I had some nausea and took one of the pills. I was so sleepy that I fell asleep when some friends stopped by the office to say hello. Discovered that I am highly sensitive to that drug, and another drug I have been on for a long time may make it over five times more potent. So no more of that stuff.

Have really felt pretty good since last Wednesday or Thursday. I have been to the office every day.

Now I have a bonus of a nice week with few side effects. The main lasting issue is the fingers being sensitive to cold, but not as bad as right after treatment. Items in the refrigerator are still somewhat painful to the touch. 

Freezer is very painful. So can touch things that are 50 degrees or warmer. Right after chemo anything below 80 degrees is painful to the touch. Fortunately the mouth is much less sensitive and I can tolerate cold drinks at this point.

Putting things on Ebay to sell has been fun and as my sister Becky says, “It's as addicting as gambling except you get money instead of losing money.” It has been a nice distraction from the chemo treatments.

It has been an amazing couple of months regarding Ebay.. I've sold about $500 each month. There have been some months that I have sold only a few dollars worth. Dad was in the Lightning Rod business. I've collected and picked up a few things through the years. I sold an old broken lightning rod point for $500. It was apparently homemade and no other collector had one. Photos of the $222 level are attached. People are crazy to pay that much!!

Thanks to so many of you for your thoughts, cards, prayers, and concerns.

John E. Swank