May 23-25 Health 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.

From the Chair of John Swank

Update for May 23-25,2014

Guy Version

Dr. thinks the Pet Scan report was “fabulous.” The nurse said it was “outstanding.”

He wants to go a total of 6 months with treatments every two weeks. 3 down and 3 to go. He said that if we had not caught the cancer when we did I “might not be sitting here.” Sobering!

Some medication doses have been lowered as I have had severe burning and peeling of hands. Especially painful from Sunday night to Monday night last time.

Cleared to fly to Colorado this summer. Joyce's (multiple) cousin Duane Gritzmaker has made us an offer of his family's “Tree House” near Winter Park. It is a wonderful place to relax.

Recent photo below. 

Reflection below on being helped by friends

The Gal Version

Sitting in chemo chair starting this update. Hopefully may get it finished today. (Didn't)

Met with my oncologist Dr. Joe Lavelle. The previous update gave the results of the PET scan on 5/14 in which the staff has called “outstanding” fantastic, etc.

The result showed “essentially normal” scan of the colon and surrounding lymph nodes. Dr. Lavelle indicated that the PET scan results indicated that the cancer was “relatively weak.” However, his treatment approach is to continue chemo every two weeks for a total of 6 months and reevaluated at that point. So 3 months down, three to go! May be that can go for 3 month intervals after that.

The sobering comment that he made was that without treatment, I likely would not be here today, based on what he saw at the beginning of treatment. A big thanks to Dr. Spagnola who found the cancer when the UVMC didn't bother checking for it.

Dr. Lavelle lowered the dosages on a couple of medications today, trying to create less side effects, esp the “hand and feet disorder”. I am going through complete peeling of skin on my right thumb for the 4th time in about 8 weeks! Hand and Feet issues have been worse this past cycle, so I am hopeful that this will reduce that. I will know by Monday evening as Sunday night and Monday are the worst time for that. (Last time on Sunday night I slept with ice packs on my hands!)

We are going to try to go to Colorado sometime in August. He gave us the go ahead and would work around treatment so that I could be a the peak of feeling good while there!

People often say to me, “Gee, you are looking good” or “You look better than I thought you would.”

What people seem to think how I'll look.

How I really look.

JOHN'S 37 Word 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.

CEA numbers track how colon cancer treatment is going.  Normal is 2 for most people , 5 if you smoke.

My numbers have been:
Feb 6th: 924
Mar.21: 152
April 4th: 64

And this past Friday

May 9th:  22.5!

Have Pet Scan tomorrow at 8:30 AM to compare that to original. May know results by Friday.

John E. Swank

Health update 5-09-14

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.

I discovered that some people who I thought were on the list were not, so some of you may be getting this for the first time I have written them about every two weeks, so if you want "back issues" let me know.

We have wonderful support from so many people. Joyce worries about me, so gets other people to help out as needed. Meals arrive every evening that we have chemo, usually brought the day before and then we heat it up. It is a fairly emotionally and physically tiring day, and so nice that we don't have to worry about what to fix. And most times we get 2 or 3 meals out of them.

So here is the latest update, started Friday and cleaned up a bit today.

05/09/2014 Update John

The Guy Version

I am starting this at Chemotherapy #6 today.

Joyce thought the last update was not very interesting. I will see if I can make it more so.

The 2^nd PET scan is scheduled for this coming Wednesday (14^th). We are hopeful that the scan will show considerable improvement from the one taken before chemo started. My oncologist was fairly positive that we would get good results based on the way the CEA count had dropped from 924 to 64.

The main issues since Chemo #5 have been:

1. More severe hand and foot disorder. Very painful especially as the chemo pump finishes up and then for the next 24-36 hours. During that time I could barely walk as the bottom of feet were painful, and hands were incredibly painful. I have been saying that the side effects were “annoying for the most part.” This last round went beyond annoying for a few days.
2. I developed a piece of the root of one of my molars projecting through the gum. I am not allowed to have dental procedures, but my dentist confirmed what it was. (chemo plays havoc with your mouth, and the gums shrink.) He said that there was nothing that could be done, but to be patient. The gum heals over it, and then the piece of tooth flakes off. The things you learn.

Chemo Farts. This I have refrained from talking about. But the flatulence you have when you have chemo is just one step down from the odor we had when a skunk sprayed our house. You tend to hurt the one you love with chemo farts. Joyce is glad the weather is nicer and I can go outside for a while!! (See I am trying to make this more interesting!!!)

Below I expand on some thoughts about how I have been approaching having been diagnosed with stage 4 colon cancer.

Philosophy and Thoughts that Help

1. Having Cancer Isn't All That Much Different.
2. The Illusion Of Having Control Makes You Feel Better.
3. Why Me?
4. It Doesn't Look Like It Is Going To Be Today!
5. Lots Of People Have Crap.
6. You Feel Better Or Worse By Where You Look.

This is expanded in the Gal Version.

The Gal Version

Philosophy/ Thoughts that help

Having Cancer Isn't All That Much Different. Having cancer is amazingly similar to regular life. There are no guarantees, you really don't have as much control over your life as you think, and you don't know what exactly tomorrow will bring. But it is easier to ignore those facts if you don't have something life-threatening going on. Joyce calls it “Life Concentrated.”

The Illusion Of Having Control Makes You Feel Better. If you want to read an interesting book I finished recently, try Incognito: The Secret Lives of the Brain by David Eagleman. He is a neuroscientist that goes into great detail how little of our life we have control over as we learn more and more about brain functioning. But the brain give us the illusion that we are in control. Research has been pretty consistent on this issue. Depressed people are more grounded in reality. Optimists believe that they are in control and perceive life correctly,   but they really screen out a great deal of reality.

Why Me? We had a good friend who developed terminal cancer. He was in his early 30's. He said, “Lots of people say 'Why me?' But why not me? Is it fair that other people have cancer, but I shouldn't. How fair is that!”

It Doesn't Look Like It Is Going To Be Today! I had a patient years ago who talked about how he worried endlessly about dying from his prostate cancer. He told me he finally began telling himself that “it doesn't look like it is going to happen today.” I have been teaching people for many years that if you focus on the “now” you don't have much anxiety.

Lots Of People Have Crap. If you look around you really discover that many, many people are dealing with difficult things in their life.

One of my favorite stories is about a woman from India who had one son, and he died. He was to be her security in old age. So she went to the local healer. The healer asked her to go around the village with a begging bowl, and collect a bean from each person whose life had not been touched by death. He promised her that her son would be brought to her alive when she came back with a full bowl. He promised that her son would be alive if she followed his advice. She started off with great enthusiasm and hopefulness, It was very late in the evening when she came back to the healer. He said asked to see her begging bowl. He showed her, and it was empty. But there was healing. She shared her story, and the other people shared their experiences with death. Her healing was different than she hoped for, but she gained a new perspective about her loss.

You Feel Better Or Worse By Where You Look. If one looks at everyone who has more or has it better or has more money or a better house, it is easy to feel a bit down. If you look at those who are less fortunate, who have less, who live in sub-standard housing, have low income or kids who hate them, it then changes. You feel pretty darn lucky. There are so many people who have it worse than I do, if I bother to look around.

Thanks for your many positive wishes and prayers and thoughts and support. It has been an interesting journey. 

And as usual, feel free to share. Cancer used to be such a secret. (My aunt Ruby, in 1960, was not told she had cancer at the advice of her physician.!)

John E. Swank

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

Mini Update - March 26

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 Only

Good News

Good News: On Monday I received the result of one of the markers used to measure treatment progress. The marker used is the CEA (Carcinoembryoni antigen). While it is not used to diagnose cancer, it can be used to monitor progress. The number for normal non-smokers is 2. My number prior to treatment was 924. My number after two treatments of chemo is down to 152. Cutting it in half would have been good. So that is a nice positive sign that the chemo I am on is working.

Not Good News: Starting Sunday evening I had intense pain, swelling and redness in both hands (almost perfectly symmetrical). As I needed blood work done, went to Kettering instead of local hospital, so they could take a look. Recommended I use Bag Balm on my hands. Also got a shot to boost my white cell production, as WBC was low.

Good News: As of today, Wed 26^th, swelling is down and constant pain is gone in my hand.

John E. Swank