Updates 03/19/2015 and 4/03/2015

Something to laugh about in the midst of cancer treatment

Joyce and I decided to go out to eat at our favorite fish dinner place the evening my portable chemo pump was hooked up. We went to The Inn Between - between Anna and Botkins. As we were finishing our meal, we noticed several of the waitstaff walking around, getting on chairs and looking up. We discovered they were trying to figure out which smoke detector was beeping. So we listened and also heard the beeping. Joyce has extremely sensitive ears, so after a while I suggested she might be able to figure it out. Joyce got up and discovered the sound was not as loud as she moved away. Then her eyes lit up and she said smiling “It is you and your pump!” My chemo pump had apparently sensed a kink in the tubing and started beeping. The staff was also relieved and amused when they discovered I was the culprit.

Update 03/19/2015

John E. Swank

Thought I would give a brief update. Some people think I may be worse if I don't send out a report. So here is a brief update.

• Things have been fairly stable the past two weeks.
• Experiencing new side effects since changed medications- now on Camptosar.
• Dodged the bullet on diarrhea which is most common side effect.
• Upset stomach and some ulcer-like symptoms made the first week after chemo uncomfortable.
• If symptoms continue will get a “scope” (EGD) study done.
• Feet and hands pain and numbness continue. Worse the day or two following treatment.
• Try to limit walking as much as possible, although I often just deal with the pain rather than do just sit around.
• Either use my “new” scooter or provided electric carts when out and about. Joyce often goes ahead and warns people that I am a dangerous driver.
• Overall, have been feeling pretty decent.

Update 04/03/2015

I never got the last update mailed out so this time you get “2 for 1.”

• Overall not much different, although become tired more easily on the new medication.
• Neuropathy causes a great deal of pain in my toes - makes walking very far painful, so use either the scooter or an electric cart in the stores. However standing is not painful as not much pressure is put on the toes.
• Started losing more hair with the change in chemo. My hair had been growing and getting thicker. Not getting extremely thin.
• Erin was home for a few days as she had a conference in Cincinnati, so saw her before and after. I think she is worried about her dad. 3^rd trip in from Denver in the last 5 months.
• Erin used her connections and got complementary tickets for Peter Pan at Wright State University, her alma mater. It was a really good performance.
• The upset stomach has not continued - yea
• The warmer weather has been nice, except it has rained a lot.
• A new and convenient change is that the infusion center is now hooking up my chemo pump as I finish my treatment. This means that the nurse does not have to come to hook up my pump. Apparently recent research has found that the sooner the pump is hooked up, the better the outcome.

Trust you have a good Easter/Spring Break. Enjoy life.

John Swank

This will be posted on the blog at: http://itwonthappenthatway.blogspot.com

Health Update 03/05/2015 - 03/06/2015

Health Update

03/05/2015 - 03/06/2015

Guy Version (short and to the point)

• PET Scan indicated growth of cancer in some areas
• Decided to switch chemo type
• Chemo delayed a week because of platelet count low last week
• So chemo was 03/05/2015
• New chemo is Camptosar. Stopped most other drugs, so chemo shorter by a couple of hours.
• Diarrhea main new projected side effect
• No longer getting chemo that causes cold sensitivity
• Still getting pump for chemo at home for another 46 hrs.
• Got a scooter donated to us (photos and story in blog)
• Support continues to be amazing

The Gal Version (more details)

I have been feeling pretty good the last several weeks.

I was to have chemo on February 27, but postponed until 3/5/15 as my platelet count was low.

Results of PET Scan indicated that the present type of chemo was not working optimally. My CEA count was going up, not down (43). Had been in the low teens. It showed some cancer in the cecum. That was where the cancer started, but it had not shown on the previous CT Scan or PET Scan I did in May. There was also some cancer on my tailbone, but Dr. Joe Lavelle was not too concerned, as long as it was not painful. There were some new cancer in the liver.

Joyce asked , “What is the bottom line at this point?” Dr Joe said “You are much better off than you were a year ago.”

So the bottom line is that I am changing chemotherapy medication. Now going to Camptosar.  Dr. Joe was confident that the new med would manage the problem. Camptosar is made from plants, including vinca, the ground cover that overruns my front yard.

The main side effect that will be new is that it causes diarrhea. (My checking on the internet said that there was early onset and late onset diarrhea. Early is within the first 24 hours. Late onset is on day 11. We shall see.) Current note 3/6/2015: After the first 36 hours, diarrhea has not been a problem. A nice side effect to not have.

Prior to changing the chemo, my CEA count taken on 2/27 had dropped from 43 to 31.7. So that was good to hear it was in the right direction. (The goal is to get below 3 or so, but mine had been over 400 when I was diagnosed.)

Also, it is strange to not have cold sensitivity. I had forgotten what that was like. The first day or two after chemo I had been having very severe cold sensitivity. I can now drink cold water without wincing.

Cousins on mom's side (Wendell, Mike and Mona) a few weeks ago gave us an almost unused scooter that their step-mother had used only a few times. 

And then Joyce called on a friend who said to call him if we ever needed anything. Within an hour after Joyce's call, he was at our place looking at how to implement our idea. Since his specialty is welding, he designed and welded a mini slip-in cargo carrier that attaches to the seat post receiver. Then he mounted a collapsible plastic crate to it, so can we can go shopping with it. He had it completed and delivered within the week. (Thanks so much, Russ).   

The scooter is just over 60 pounds after battery, carrier and seat are removed. So Joyce and I can lift it into the back of the car fairly easily. Joyce warns everyone to stay out of my way!!!

So be careful telling Joyce to call if we need anything!!!

So many people been there for us in so many ways. In just the past week, Janice and Pat donated and delivered 16 cups of Dannon Activia Greek yogurt. Deb made an emergency run for drinks and orange sherbet as Joyce was under the weather with an intestinal bug. Paul, our neighbor, plowed our driveway before plowing his own. Jeff spent several hours identifying the exact part that needed to be ordered to repair a broken car door latch. Todd and Shelley included us in their family meal on short notice.

Others have called to provide emotional support to us. Joyce's cousin and sisters provide telephone support from California, Cleveland, South Carolina and Tennessee. And my brother, Dan, took me to the 2^nd street Market in Dayton for French Crepes, and then to chemo as Joyce was still recuperating. And that is just part of one week's help! We are overwhelmed and so appreciative.

John and Joyce

Health Update February 21, 2015

February 21, 2015

Health Update

The last several months have been fairly stable. So there is not much critical to update about. I have been feeling pretty good. I started chemo just a year ago on February 21, 2014.

• Chemo was delayed from January 24^th, as I had congestion, and laryngitis, so took antibiotics.
• Had chemo on February 13 and January 31
• PET Scan Scheduled on Monday, Feb 23^rd, 10 am (Previous was in May 2014)
• Next Chemo is Friday, February 27. This will be my 20^th chemo treatment. I will get results of PET scan at that time.
• Fortunately no mouth sores so far his round.
• Very dumbfounded and incredibly sad about sudden death of my younger cousin, Dedra Chinn. She was just 62 years old. She went into the hospital on January 13^th, and was diagnosed with Anaplastic Lymphoma. She died on February 16^th and the funeral was yesterday (February 20^th).
• The rest of the update will be on my blog. I thought I would reflect on what it means when I say I am doing pretty good. It really has a lot to do with adjusting to the New Normal. If you are interested in what I experience when I am doing “pretty good.”  That blog is below.

Note: Donations to Partners in Hope amount to about $1200. Thanks to all.

What "doing pretty good" means. The New Normal

Doing Pretty Good: The New Normal

I am not putting this together to get sympathy but hopefully for you to understand what may be happening when other people going through chemo treatment say they are doing “pretty good” or “Not bad.” These are my reflections, others I am sure are different.

Many people ask me how I am doing. Unless something drastic is going on I say something like “I'm doing pretty good.”

So when I say things are going fairly well...here is what is happening as the “new normal.”

• Feet and toes. My feet are very sensitive, especially the toes. Hurts doing nothing, hurts a lot more walking, so try not to do much at once. Other times I just say, “what the hell” and deal with the pain. Use wheel chair or electric cart if going very far. At the same time there is a great deal of numbness in my feet.(pain and numbness-strange bedfellows). When I wake up in the morning, it feels like I have thick callouses on the bottom of my feet. Feels like cardboard attached, even though the skin of my feet are soft.
• Hands and fingers. Pain a great deal of the time. Hurts to type but I keep doing it Although learning to do a lot with voice activation on computer and smart phone. Then just have to edit it. Even fun to see what it thinks I said!!
• Sensitivity to cold. Mostly fingers and hands. Hard to get gloves that are warm enough in this weather. Worse beginning from chemo treatment day, diminishes slightly over time. Wear gloves a great deal of the time. Essential to get things out of the freezer. Forget gloves...grab it and stick it under my arm until I can put it down safely.
• Coordination is poor. I have fallen several times and been lucky many more times as there was something nearby for me to grab on or fall against. Use a handrail to get into shower/tub. Joyce won't let me drive, for some reason she wants to get there safely. I don't argue much although it is hard to give all the work of driving to Joyce. (To be fair she does let me turn the car around in the driveway!!)
• Skin breakdown. My skin is much thinner, so more likely to scrape myself and have no idea how I did it.
• Hands. I have cracks on my palm side of hands. Fighting cracks almost constantly, especially below first joint of each thumb, and at other joints as well. The best treatment is “Bag Balm.” Works better and lasts longer than the best of lotions. I also use it to keep bottom of feet from cracking. I've used 10 times more bag balm this year than the previous 67 years total. However, I highly recommend it. Oncologist recommended. Dr. Lavelle's dad was a vet for 65 years.
• Use of hands. Have to use opener on jars, 2 liter bottles, etc. Hurts to open plastic lids on plastic containers such as cottage cheese, tupperware, plastic shoe boxes, lids to totes, etc. Hurts to open the non-safety caps on pills. Kills my fingers. There is pain carrying almost anything without wearing gloves. Amazing how many things have what feel like “sharp edges.” Tried to carry a not so heavy banker's box, and the pain when I grabbed the hand-hold area was incredible. Made a mad dash for the gloves. I have about 20 pair of gloves stashed around the house.
• Finger nails. Constantly breaking and cracking as they are thin.
• Toe nails Essentially lost large toenail on each foot, but hurts less since podiatrist treated and trimmed. After chemo a lot of redness on first and second toe.
• Hair loss Lost about 90% initially, but growing back quite a bit. More curly than before, says Joyce.
• Nose. I have used a year's supply of Kleenex each month. Nose starts dripping “out of the blue.” Almost always when I eat. Every time I blow my nose, it is bloody. Fortunately does not continue bleeding, just the new normal. Unfortunately, this creates a cycle of a build up of blood clots in my nose, which blocks breathing.
• Nasal passages are very dry and “crusty.” (chemo treatment attacks fast growing cancer cells. However, cells in mouth and nasal passages are fast growing, so they are damaged as well.) Lots and lots of saline spray. I use humidifiers. Visiting nurse recently recommended K-Y Jelly applied with a Q-tip. It works, but I can think of more enjoyable uses for K-Y.
• Mouth Sores. There is a high risk of severe mouth sores. They were terrible in the early months of treatment. Have learned to be more aggressive with preventive treatment. Rinse my mouth 6-8 times a day, almost every day, with a salt and baking soda combination. Last few cycles have had only small canker sores between lip and teeth. A friend whose husband is a dentist recommended s great pain killing and healing paste.** (Thanks, Judy..Joyce and I played cupid with Judy and Gary about 30 years ago)
• Sensory feedback As it is diminished I can be drooling and not have any sensation of it happening. Point it out to me, please. Joyce does!!!
• Tiredness is my constant companion, but varies. I find that I am tired whether I do or don't do much. Sleep more than usual.

**It is sold under brand name of Oralone Dental Paste- Rx required. It adheres to the sore, and gives me 8-12 hours of relief. Amazing stuff. Oncology doctor, NP, and nurses not familiar with it, so I am constantly promoting it.

Slide Show from Open House

I put together a slide show for our open house "Side by Side....Through the years...."
It is available on my Picasa Web page. Here is the link:

https://picasaweb.google.com/105945334844382807880/JohnAndJoyceSwankThroughTheYears02?authuser=0&feat=directlink

You have more control if you use the link above...duration of slide, etc

Or you can watch it below....

Report on Donations to Partners in Hope.

Just received an updated report from Partners in Hope regarding the contributions that friends and family gave to them in honor of our multi-celebration.

Donation of items made a contribution of $540 in value.
Cash donations totaled $355, with a total donation of $895.

Joyce and I are overwhelmed with your generosity that helps benefit a great organization. I was impressed when the staff said that if they get a big jug of laundry detergent, they divide it into smaller amounts to help more people. And the Christian Auto Repair Program is such a help to those who struggle to keep their car running and safe.

Chemo delayed

I have been having some congestion, and then developed laryngitis on Monday.  Yesterday I started antibiotics, so chemo has been delayed for a week (Friday, 30 Jan).

I am feeling a bit better.

John