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

Open House Retirement, 45th anniversary, and 1 year surviving Cancer

The open house on January 18th was beyond our expectations. We were celebrating our (delayed) 45th anniversary, our retirement and a year surviving cancer. We had over 100 people in attendance. We had asked people to bring donations to Partners in Hope.  We asked people to bring items that people can't get on food stamps.  So people brought paper towels, laundry detergent, toothpaste, toilet paper, baby wipes, diapers and more. There was enough to fill the back of a Subaru Forester (back seats down). Partners in Hope sent us a note that they  calculated $520 worth of products. In addition there was over $200 in cash donations.

As Joyce says, "we don't need more stuff, let's give it to those who need stuff."

We had a wonderful group of friends who stepped in and made everything go smoothly. It helped us relax and enjoy the event.

Here are some photos from the event.

John

Daughter Erin, John and Joyce. We dressed the part as sapphire is the gem for a 45th anniversary

Friends Rolfe and Mary (left front) from Madison, Wisconsin. Our first friends as a married couple and Erin's Godparents. With John, Joyce and Erin.

Nancy and Mike (Mike's mother, and John's mother were sisters)

Doug and Mona- Mike and Wendell's sister.(Mona's mother and John's mother were sisters)

John with Faye and James. James is Joyce's PCP

Randy and Debbie, friends for a long time.

Frank and Dee from Convoy, OH. We've know Dee since 1974.

David (Tabi's dad) Jeff and Tabi. Good friends and part of our support team.

L-R: Bonnie, daughter Debbie, and Gary. Bonnie is Joyce's older sister. Gary is Joyce's step-sister's husband.

Ken (dad) flanked by Kevin and David. Ken is Bonnie's husband

L-R: Erin with two of our neighbors, Jaden, and grandmother, Doris. .

Bob and Becky (John's sister). Bob's dad and John's dad are brothers.

Wendell (John's cousin on his mom's side) & Teresa

Erin and Brenda and bowling pin Nun. They performed together in "Nunsense" in 1993.

Erin sang Side by Side, Red Canvas Canoe, To Morrow and Rainbow Connection.

Erin,  Christa (Joyce's brother's daughter) and Richard signing

L-R: Erin, Tina, Nancy, Shelli,  Tabi. Todd and Jeff

 We will add some photos to the blog as time goes on.

If you have photos from the open house, email them to me or post them, please