Christmas Day Greetings, Letter, Invitation

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.

Christmas Day 2014

I've often been annoyed by Christmas letters that talk about health issues, one after another. But now it might be our turn.

As many of you know, John was diagnosed in February with colon cancer that had spread to his liver. So that has been the background of almost all of the year. Our life has changed immensely because of that diagnosis. In spite of that, as well as because of it, many parts of our lives have changed for the better.

• We have discovered the immense support and caring of friends. It is humbling and overwhelming at times.
• Joyce and I feel more intensely in love than almost any other time in our 45 years of marriage. We try to cherish and appreciate each day.
• The kindness and support of strangers continues to amaze us.
• Friends support to Joyce, the often too tired caretaker, has been incredibly generous and helpful.
• “Things” are less important, friendship are more important
• Joyce describes it all as “life concentrated.”
• In July we worked in a great vacation to Colorado to visit Erin and Mike, as well as staying at Duane (Joyce's cousin x 3) and Barb Gritzmaker's “Treehouse” near Winterpark. Erin took us for a first time kayaking in her inflatable kayaks, and we saw three operas, which were a part of Central City Opera where Erin works.
• Retirement has been accelerated. We closed our office officially on November 26. That has been an emotionally challenging event, as clients are a part of our “family.”
• We are in the wonderful/challenging process of finishing up, moving out, donating, selling and throwing away accumulations of 29 years at the office. Almost done now.
• We are also required to keep patient files for 7-10 years. So a section of John's workshop has become the “File Room.” So we have moved home about 60 file drawers of records and office supplies. Sorting comes later.

The prayers and support of so many people has upheld us, making life special. To celebrate our life journey, you are invited to an open house on January 18. See the details in the attachment.

So, savor and appreciate every day. “We don't know what's coming tomorrow.” *

John and Joyce Swank

* from “Side by Side”

John's Health Update 11/14/2014

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

• The reports of me being in hospice is a false rumor
• The reports of me being in remission is also a false rumor.
• The latest two round of chemo have been some of the easiest -relatively speaking
• Neuropathy- pain in fingertips and pain in toes are the predominant challenges
• Proprioception explains a lot especially when it is affected by chemo
• Chemo received 10/29/2014 and 11/14/2014... Next 12/05/2014
• Closing the office. Last official day this Wednesday, 11/26
• January 18- Sunday from 1-4 at the Comfort Suites Troy will be Joyce and my retirement/ 45^th anniversary/ 1 year of surviving cancer event. Join us if you can. More details later.

Gal Version

One of my clients came for an appointment about 2 weeks ago. I was puzzled when she gave a sigh and said she was glad to see me. Her family physician (who I've worked with for 20 years or so) had told her I was in hospice! I had a good chat with him later in the day, and surprised him with my correction.

Paraphrasing a Mark Twain quote: “The reports of my imminent death is highly exaggerated”

Neither am I in remission. When one has stage 4 colon cancer there is no talk of remission. I am assuming continual treatment. No one talks of cure, no one says how many treatments. Just keep “knocking the cancer down.”

The last two rounds of chemo are probably the least side effects of any for a long time. No mouth sores, no peeling. Pain/numbness in hands and feet are the challenges, but they are manageable. I can tie shoes, zip zippers and button most of my buttons! The sensitivity to coldness is much less severe than in the past. The real test is how soon I can eat ice cream or have ice in my drinks. Only a couple of days when it is much of a challenge. I can't hold cold things out of the freezer for very long, but much less use of my gloves than in the past.

Proprioception – a new word I learned that seems to explain a lot. My coordination and loss of balance has been some problem. Discovered that chemo impacts proprioception. Proprioception is the ability of knowing where your body is in space. I trip over my own feet when turning suddenly. Walking to the bathroom in the middle of the night is challenging, as I find it hard to keep balance, but not dizzy or anything. Most people can close their eyes and touch the tip of their nose. I miss by an inch or two.

When you drink too much, you lose your proprioception. Joyce just doesn't like the idea of me driving for some reason.

I am learning the benefit of “OK Google Now.” Talking to my android smart phone or computer sure saves pain in the fingers from typing. And when fingertips are numb, hard to touch the correct place on the phone.

Getting back on the pump has been a huge help. No more walking around Kroger! Also going 3 weeks this time as normal day for chemo would have been “Black Friday.” I guess the staff at the infusion center wanted to go shopping.

Closing the office has been emotionally difficult. And then we have to liquidate almost everything in the next month. Bringing some furniture home, and getting rid of some of the stuff at home. Quite a challenge. Joyce is the trouper. We have to keep records for 7-10 years so bringing home about 6 file cabinets of stuff. Making room for the essentials is interesting. Plus shifting many things around in our home to keep what we want, eliminate less important things.

I thought it was time to get an update out, as people have been emailing me wondering how I am doing. Not too bad....compared to some other times in the past 9 months. 

Always glad to hear from you. Hopefully I can do better at answering emails since retiring. Thanks for the concern, thoughts and prayers. 

John E. Swank

John's Health Update 10/29/2014

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 Only

• Plans for our celebration (Retirement/ 45^th anniversary/surviving cancer) is set for Sunday, January 18^th, 1-4 pm at Comfort Suites in Troy (behind Walmart). If you don't getting an invitation otherwise, consider yourself invited.
• We are on count down to closing office on November 26^th. Then deal with 29 years of accumulated office things.
• Had a good couple of weeks as had stopped chemo as having a lot of “Hand and Foot” disorder. Also had an infected toenail, so during break, took care of both.
• The resolution of the toenail infection means I can wear shoes other than SAS ones. Walking is so much easier than has been for months and months.
• An example of how good I have been feeling (compared to being wheelchair bound 6-7 weeks ago.)....I walked around Kroger and didn't use the electric cart this week. First time in 6-8 months.
• At appointment with oncologist this am, with report from Friday's CT scan that showed improvement. No spreading of cancer, and all lesions in the liver are reduced in size compared to first CT scan in February. Also no obvious sign in the abdomen or lymph nodes.  Dr. said it was all good news. and he had a big smile.  So great news for now. 
• Still having challenge get blood thinner regulated. Having home test machine is helpful, but haven't learned to love sticking myself.
• Am in chemo now...should be done by 3pm.
• Most people think I am looking much better, which does match the way I feel.

So instead of waiting two weeks more or so, I am sending this out right away.

John E. Swank

John's Health Update 10/15/2014

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.

Report Update , John Swank

started 9/26/2014----then finished on 10/16

Most recent was August 29. 2014

[Editor's note, it also included 9/5/14. He also called this one both 10/15 & 10/16. Was sent 10/15. Chemo Brain!]

Guy Version

• Only hurts when I walk, stand, pull up zippers, button shirts, type....
• Had a really bad week September 12-19, but I sent Joyce on her vacation anyway
• Had a good week with my sister, Becky, who came to stay with me while Joyce on vacation with her sisters. Managed to work in some fun events in the area, although took it slow. And Becky got a workout pushing my wheelchair.
• Have quit oral form of 5-FU chemo which was disastrous. Now back on pump.
• Infected large toenails are now the big challenge as inhibits walking and adds to the pain
• Have decided to close our office at Thanksgiving time.
• Erin home October 1-5 as she was worried about her dad. Fortunately by the time she got here, I was feeling pretty good. I spent 8+hours in the workshop teaching her to use the lathe. **
• Planning celebration of 45^th anniversary and retirement on January 18^th Sunday afternoon.
• I have had a number of people say to me, “so you are in remission.” When you have stage 4 colon cancer there is no talk of remission, and there is not a set number of treatments.

Gal Version

Been six weeks or so while since I have written an update, so here goes.

9/26/2014

What a few couple of weeks. I had my second round of Xelota, (oral form of 5-FU) which I took orally for 14 days. The neuropathic pain (hand and foot disorder) kicked in with vengeance. Could not walk barefooted on hardwood floor or ceramic tile. Just slightly better with shoes on. Used wheelchair if went any distance at all. Typing was intolerable, so learned to use Google word recognition.

On Saturday, September 13^th, I felt crappy, and started running a fever of 99---then over 100. (Crisis point in Chemo world). Stayed high and headed to 101, so called oncologist on call who said what we expected---go to ER. I was expecting to be hospitalized...but blood work and immune functions were fine. I appreciated his conservative approach...we could throw antibiotics at it, but not sure what we are treating. Temp continued high on Sunday and Monday. Monday. Got IV infusion as dehydrated. Temp up to 102 which is critical. Monday night had urinary track infection, so now the doctor knew what to treat. So started a week of Cipro....Temp went down, but pain in hand and feet horrible. Could not eat or drink much for about a week and lost 10 lbs.

Joyce almost canceled her trip (on September 17^th) for the 19^th Sister's week south of Charleston, but I insisted she go. She needed a break and got one. My sister, Becky, came to stay with me....and do some day trips. Becky was a trooper, pushing me in a wheelchair around, including an 1.5 hr tour of the Kitchenaid plant in Greenville. Really enjoyed the Packard Museum in Dayton, as dad had two during the time we were growing up..Very embarrassing at the time, 1948 Packard in 1959. A tub when all the new cars had wonderful fins. Becky learned to drive on one. See Becky with one like she learned to drive. 

Decided to postpone chemo on September 19^th, as just barely feeling better.

The next week we managed to get back on the 46 hour pump I wear...Much fewer side effects....

So started the pump on September 26^th.

10/12/2014

Still a lot of neuropathy, pain when walking, numbness and pain in hands, and lots of peelings. Shed all my skin on palm side of hands, and big chunks of skin off feet.

Both big toes have loose and infected toenails. Very Painful.

Scheduled to have chemo this past Friday (October 10^th), but decided to take a 2-3 week break to give the compounding effects of the chemo a chance to quiet down...less “hand and foot syndrome” hopefully.

Also I started antibiotic for the nail bed infection, and will see a podiatrist on 10/13.

Going to have a cat CT scan 10-24-2014 to see status of cancer in colon and liver. Then will start up chemo the next week. The most recent tumor marker number (CEA) was 5.7...closer to the goal of 2 or less. Very good since started at 924!!

In the midst of this, Joyce and I made the decision to close the office by Thanksgiving. Started in Troy doing counseling in September 1985, so have 29 years of stuff to deal with. It is emotionally difficult. Many of the clients are like family. 

On a more upbeat note, Joyce and I are planning a celebration. Mark your Calendars for Sunday, January 18^th. Will be somewhere around 1-5pm. A belated 45^th anniversary event, retirement celebration, and a year surviving cancer. It will be in Troy, the location to be nailed down in the next couple of weeks.

Erin flew in and was here Oct 1-5. She was worried about me. My first reaction was that it was unnecessary and foolish of her. But I am glad she came. Went to Shaw Farms (Joyce's aunt an uncle) in Milford. Erin looks forward to that. It is a huge deal. www.shawfarms.com

** A special treat for me was spending about 8 hours or so using the lathe. Erin had never used a lathe before. I find it one of the most fun workshop tools where in a relatively short time can turn out something interesting. You can see some of what we did here.

As of now, it only hurts when I walk or stand or type, or try to zip up pants or button shirts. Joyce does the driving and I use a wheelchair if I have to go very far. But strangely, otherwise feel pretty good.

Thanks for the many notes. Your prayers and support are appreciated.

John Swank 10/15/2014

PS: Went to podiatrist Monday and after she radically trimmed back the two large toe loose toenails, the pain is much less when I walk. And the antibiotic is also helping. You are spared the photos!!!

John Update 09/05/14

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.

08/29/2014 and 9/5/14

John Update

Guy Version

·         My feet hurt like hell.

·         Mouth sores for 6 days made me think dying didn't sound too bad

·         Still went to work, parties and dancing

·         My brother, Dan, and I went on a bike ride Labor Day.

·         Joyce and my 45^th anniversary is tomorrow. What a supportive wife!

Gal Version

·         I have chemo every three weeks now since started oral Xeloda in place of the pump ( Xeloda is oral form of 5-FU)

·         I did not have any great problems (a bit more pain in hands and feet) the first 10 days

·         Then for the next 6 days I had severe sores in my mouth under my tongue toward the back. Ouch!!

·         Got to the place I could barely eat, or even talk much. Everything hurt when swallowed. My mouth was extremely dry, and hard to keep hydrated when it hurts to swallow

·         Started getting better about 6 days later , and so I have had another good 4 days until I started chemo again.

·         Feet have been quite painful most of the time, along with constant pain in finger tips

·         Dr. Lavelle yesterday told me to expect “stacking of symptoms” when taking Xeloda

·         Unfortunately that means symptoms may increase each time I take it. I am so looking forward to that...although I have learned some things that may help lessen the sore mouth.

·         In spite of that, went to Biergarten and went to a birthday party for a cousin, while dealing with the sore mouth.

·         Also made it to work each day.

Again, I appreciate your support. I am amazed how I get cards from people I don't know well as well as from friends I do know. Thanks to all.

09/05/2014

·         My brother, Dan, and I went on a bike ride Monday afternoon. Biked about 3.5 miles round trip from the covered bridge up to where the new bike bridge is in the finishing stage. This bridge will win awards as the most beautiful bike bridge in Ohio.

·         Now a week post-infusion, one more week to go on the Xeloda. Pain in feet are the worst. Pain in tips of fingers comes in second. Other side effects minimal.

·         I am doing some research about whether we can get the 46 hr.infusion pump used again. The advantage is you get bulk of symptoms over quickly. Can't find anyone to hook and unhook the pump for less than $280. Not covered by any insurance.

·         Went to Octoberfest at Edelweiss Club in Englewood on past Saturday. Took pain pills and managed to get on the dance floor with Joyce for some polka and schottische.

·         Since fingertips hurt, have been learning to use Google Voice to Text. It is fun, and amazing. It will type a “wrong” word, but then often corrects it when it gets the context. And then editing doesn't require so much typing. Fortunately does not type in “uhh” every time I say it.

Thanks to all for expressions of concern and prayers. Cherish each day.

John E. Swank

Update 08/08/2014 finished 8-14-2014

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.

Starting this in chemo today, Friday August 8. 

Guy Version

• Have been off chemo since June 20^th because want to feel good for....
• 10 day vacation in Colorado—Saw Erin, and much more (see below)
• Starting three week schedule with chemo because...
• Starting new pill form of 5FU instead of 46 hour pump to wear, but....
• Have to take pills (Xeloda) twice a day for two weeks
• Hair is growing back
• Have felt pretty good except.....
• Neuropathy, esp pain in feet constantly. Doesn't seem to be worse if walking, and it is tolerable. Also fingers tips numb
• No idea of how Xeloda will work out. I hope I am one of the “some people have fewer side effects.”

Current update  Since chemo. Xeloda seems to be giving fewer side effects. Only thing is perhaps a bit more numbness in my fingertips and pain in feet. Pain in the ass to remember to take Xeloda as has to be taken within 30 minutes of eating and about 12 hours apart. A regular eating schedule is not us. 

Gal Version

Vacation events

• Flew to Denver on July 23^rd. Took early bird flight, so arrived Denver 7:30 am.  Huge thank you to Doug Page who met us at 4:15am to bring our car back from the airport.
• July 23- Had great breakfast at a jewish diner. Great Bagels along with breakfast.
• Dropped Erin off at her Central City Opera office parking lot in Denver, as she was going to spend several days working with Central City Opera in Central City, of course. We got to use her car, cheapskates that we are.
• Stayed night in Denver to acclimate to high altitude. Erin's husband, Mike, grilled us shish kabobs. Mmmmmm.
• July 24- Headed to the “Treehouse” in Fraser, Co, just beyond Winter Park. Joyce's multiple cousin, Duane and his wife, Barb, offered us the use of it if I were able to travel. Elevation 8500 feet or so.  A wonderful place to rest and relax, thanks to no TV or Internet connection. A real downer, however, when we got a call from Dee Howell's daughter, that our good friend Dee had been diagnosed with terminal cancer in April, and was now heading to hospice care. Had been in touch just before then, but she had not shared it with many people. 
• July 25 (Friday)- Went to Central City Opera where we saw performance of “Dead Man Walking” (extremely well done), and then an opera performed by a group of teens,. They had written and produced the opera during their 10 day intensive camp. Amazing for putting it all together in such a short time.
• Then back to Treehouse- about 1hr 15 minutes from Central City.
• July 26 (Saturday) Went to Georgetown.  Joyce by now is really loving the many switchbacks on Route 40 and we spent 4 hours doing a tour of historic homes and buildings. (So much for relaxing at the Treehouse).  Then picked up Erin at Central City, and went back to her home in Aurora.
• July 27- More relaxing-Ha! Drove an hour and a half in Erin's Honda Fit with Erin, Joyce, and two 2-person inflatable Kayaks. Went SW of Denver where we kayaked the South Fork of the South Platte River. (near Deckers, Co). I pumped up two inflatable kayaks, and then I went in the front of Erin's 2 person kayak, where she thought I could rest when needed. Mostly watched Joyce (in kayak alone) get hung up on rocks. Took a 3 hours -- 6 miles kayak trip. Erin enjoyed it way too much when we hit some rapids and I got wet up to my neck. Thank God for self-bailing Kayaks.
• July 29- celebrated Joyce’s birthday with shrimp kabob’s. Raining most of time at the Tree House.
• July 30. Did some driving around the area, going west on Route 40. (My sister Becky and I have explored Route 40- National Road from Cumberland Md to Vandalia Illinois. So had fun taking more photos of old building and 1940-50;s era motels, as well as other older building. Raining off and on. Break in weather and caught a local group performing at the Fraser park.
• July 31. Saw preview/dress rehearsal of “Sound of Music.” This was performed by Central City Opera. I was ho-hum going into it. But it was fantastic with the professionalism and clarity of the opera singers/actors.
• August 1 Went to Verizon and got a 4 person plan with Erin, Mike, Joyce and myself. We are now dummies using smart phones. (Motorola Minis).  Relaxed and got things packed
•  August 2. Erin took us to airport for a noonish flight.  TSA now is the proud owner of my key ring sized leatherman, as I forgot to put it in baggage. Arrived home uneventfully about 6:00 pm. Good friend and adopted daughter, Jenn Creech picked us up from airport and brought us home.

Sunday, August 3:  Make quick trip to Van Wert County where we lived for a decade because our good friend, Dee, was dying of cancer. She had requested that we visit her. Had extremely fast type CA  (gall bladder and bile duct). Got to visit with some other friends as well. Special thanks to Nancy and Don Johnson who hosted us for lunch.  So a trip with great range of feelings. [Got word yesterday that Dee died.]

It is humbling all the people who help us. You know who you are, so thanks so much. 

John E. Swank

July 23 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.

John Update 07/23/2014

Guy Version

1. I have been feeling pretty good since out of the hospital on July 1.
2. I have been to work every day, although sometimes shorter days.
3. I am taking a break from chemo as going on vacation.
4. I am typing this on the plane to Denver to see Erin
5. Going to stay near Winter Park in Joyce's cousin's cabin.
6. Will be home on August 2^nd
7. Chemo starts again on August 8^th.
8. I am starting a new medication. Instead of the pump (for 5 FU) for 46 hours after chemo, I am switching to Xeloda which metabolizes to 5FU. I will take it twice a day for 2 weeks,
9. And then off a week. Not sure how the side effects will work.
10. Chemo will be every three weeks.
11. Started wearing thigh-high compression stockings as the leg with the blood clot started swelling more.and then hurting. They actually are a big help and not as uncomfortable as I had imagined.

Gal Version

The last update I was just getting out of the hospital on July 1. The good news is that I have been feeling quite good since then. I was scheduled to have chemo on July 3^rd, but decided to postpone it a week. Then when I went in to see the oncologist on July 11, he decided to wait on chemo, as we were going on vacation on July 23. (I am writing this at the airport at 5:30 am.) The oncologist was concerned that I had been in the hospital a week after hospitalization, and if that happened again, it would be right before our vacation was scheduled. Dr. Lavelle's approach is to balance quality of life with treatment. So now I am scheduled for Chemo after we get back on August 8.

Vacation: We are going to Denver to see our daughter, Erin. Joyce's cousin, Duane, offered us the use of his cabin, “The Treehouse” near Winter Park (Fraser, Co)), right after I was diagnosed with colon cancer. He said when I was able to come out and we could have the use of it. So we will be at the “Treehouse” part of the time and back at Erin's in Aurora part of the time. Erin is busy part of the time, as summer-time is when she is busy at “Central City Opera.” Most of the year she is based out of Denver But in the summer the opera company does many productions up at Central City. So we will catch up with her when she has time off...Saturday.

Erin and Mike got two inflatable Kayaks (each can carry 2), so she wants us to hit the River on Sunday morning. 

She has had such fun with them, esp kayaking with friends on the Platte River that goes through Denver.

We are staying at Mike and Erin (minus Erin) the first night to acclimate to the higher altitude. Then head up to the Treehouse on Thursday.

We are scheduled to meet my cousin, Shari Swank Sirridge, about noon today for lunch. (There seems to be western migration of Swanks, as Shari's brother, Phil, and two daughters are in the Denver area.

So we are looking forward to resting and relaxing for a while, although the schedule keeps filling up. We will be returning home on Saturday, August 2.

So, although it has been a while since I have written, I have been feeling pretty good. The main lingering side effects is neuropathy (Hand and Foot Syndrome). Finger tips are numb, and areas around the toes remain painful. It makes walking long distances challenging. I try to walk when I find it enjoyable. But in the stores I grab an electric cart. Electric carts in stores are fascinating. If you run into somebody, they apologize to you!!!

I have had leg swelling more on the leg with the blood clot. Probably because I am feeling better, I am on my feet more. And then there as pain in that leg again, something I had not had for months. So since I was to get compression stockings for the plane flight, I have started wearing every day. I now have greater appreciation for women who wear thigh high nylons!!

For 3 months I was having a nurse come to the house and hook up my IV pump after chemo and then come back on Sunday to unhook it. They called and said my case was closed as I was not housebound. We discovered that the only way to continue with the pump was to pay $140 per hookup and then $140 to unhook me. Medicare does not cover and there is no place I can go to an office and get it done. So......

We are switching to Xeloda, an oral dosage that I will take for 2 weeks. Some say the side effects are milder, but then perhaps they last longer. We shall see.

The last CEA (tumor marker) was 7.9, Goal is 2 or below, but I started out at 924.9. Dr. Lavelle thinks it will come down more with treatment.

Thanks for your love, caring and support. And especially your support to Joyce.

John E. Swank

Re: how are you?

Note from Erin: I'm going back and posting from Dad's original emails, so you can catch up. The actual first date of the wholer blog was in January 2015. This particular email was sent only to some family on July 3, 2014, following hospitalization over prior weekend

In response to the question, "Hi, how are you feeling? A treatment today? Thinking of you."

I have 40x more energy than when I was in the hospital. Almost hypomanic. Could not sleep last night. Only slept about 2 hours, Still feel good. I slept enough from Sat AM til Tuesday that I should still have some extra sleep credit! Ha!

I was at office yesterday and today.

I forgot until the update went out to say that I have postponed chemo a week. Oncologist let it up to me, and I figured another week to recover wasn't too bad an idea. Also that way I will have chemo on 11th, and  then none before our trip to Colorado. Otherwise would have had chemo a week before left for trip....but 7 days was when I got in trouble this time.

Then will resume Friday after get back, Aug 8. So off chemo almost a month. But not sure it makes that big a difference at this point, as sometimes take 3 month break after 12 visits. (Research I read says you do better if you keep treating, just not so often.)  Will see what Dr. Lavelle's thoughts on it are. Chemo on 11th will be number 10 of 12. Then re-evaluate after 12th.session.

I think my body needs to recover from all the antibiotics that they threw at me while in the hospital. I am still having difficulty with many foods just don't have much taste to me. I have pill form of antibiotic to take for a week after out of hospital. (Ice cream is an exception!!)

I have mostly enjoyed eating smooth things...pudding, cottage cheese, yogurt, jello, fruit, etc.

Mouth sores pretty well healed, so not so difficult to eat or talk on the phone.

Copied in [to other family] as I wanted to send out basically the same information since I had forgotten it.

John E. Swank

July 2 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.

July 2, 2014

Update

I ended up in hospital after going to ER midnight Saturday (June 28). I had been sleepy all day Saturday (unusual for weekend after treatment). I became chilled, and then temperature went above 100 degrees which is considered emergency if on chemo. Checked with doctor on call, and I went to  Kettering hosp.ER  Had two dear friend, Deb and Doug go with us which was a godsend as it was 6am til Joyce got home, and Doug drove.

Was admitted as my white blood count was down and they were concerned about bacterial infection. So stuffed me full of antibiotics and fluid. As it took 48 hours for tests to come back kept me til Tuesday. Tests were negative. So I came home yesterday evening. I slept most of time in hospital, and had little appetite, I think, because of antibiotics. My WBC came up quickly after meds.

Joyce’s sister Becky (former oncology nurse) said it was a good idea I checked it out quickly as things can get critical very fast with a low WBC.

I feel much better this am. Am at work, trying to catch up. Best I have felt since before all this started. Almost, not quite, back to normal.

Another adventure with the cancer treatment.

John E. Swank

06/20/2014 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 Desk Chair of

John E. Swank

Chemo Update 06/20/14

Guy and Gal version

It has been a month or so since my last update.

• That is mostly because things have been going very well.

• Had blistered feet about 3 weeks ago. I think it was because I thought wearing sandals was a good idea. Not! So wearing socks seem important.
• The past two weeks has been the easiest for about 3 months. No blistering. Cold sensitivity not as severe. The only challenges have been sore feet, hurting when walking.
• Good news: no blistering of hands, no intense “on fire” feeling with hands right after chemo. Tolerating cold food and touching moderately cold things not a problem. (Can wash my hands in moderately cold water, which was painful before, Items from the freezer still hurt.)
• Energy level better. Working in the yard, cleaning out workshop. (although I might have been more tired than I thought, as I slept until 11am on this past weekend!)
• Cleared for Trip to Colorado. Going July 23, back August 2. More details later.
• CEA level dropped again from 16+ to 11.0 As CEA of 2 is normal, certainly much better than the 924 level we started with in February.
• I have been seeing clients most days. Thursday saw 4 clients. Yesterday saw 8 clients, when 5-6 is a full day.
• Had 6 ash trees and 2 pine trees cut down. Joyce has been very busy stacking firewood and cleaning up brush. Thank goodness for Garrett Jones (13 year old) whose work energy, and wide knowledge of so many things has been a god-send for us. When he heard I was sick, he thought through how he could help Joyce and I. He thought Joyce could use help with yard work. (Garrett does not remember ever not being in Joyce's children's choir at church.) Joyce tries to keep up with him!! Not easy.  Joyce was hoping to "get by" with yard work this year, doing minimum. With Garrett, our yard is better than usual!!

Just finishing up chemo as I write this. Thanks for notes and support.

John E. Swank

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