Journey to Normal

John frequently spoke of the "new normal" in dealing with his cancer.

It could refer to the neuropathy in his fingers and toes, energy or pain level, activity limitations, or just what he/we did as our daily routine.  We learned to constantly adapt to new normals.  We had no choice but to do so and to try to remain as positive as possible.

I continue that journey to my "new normal."  I am trying to do so with the same open and positive attitude that John and I found worked for us.

While John was in the hospital, we discovered how often people use the phrase "You're fine."  If you listen you'll hear it frequently in daily conversation.  In our new "hospital normal" we started to respond with "We're not fine, but we're okay."

So many of you have expressed your concern for me in my new journey.  I continue to be amazed by all of the expressions and acts of love and caring.  I want you to know that "I'm not fine, but I'm okay."  Thanks for being there for me on my journey to my "new normal."   Joyce

Preliminary Information

SWANK, John E., 68, of Piqua, died May 31, 2015. Son of the late Ross and Gladys (Guiller) Swank, he was born January 17, 1947 and grew up near Lewisburg. John was a licensed professional clinical counselor in Troy for nearly 30 years. From 1974 to 1984, he served as pastor of Trinity Lutheran Church in Convoy. He is survived by his wife of 45 years, Joyce (Braun) Swank of Piqua and daughter, Erin Joy Swank (Mike Wymore), of Aurora, Colorado, along with extended family and friends. A memorial celebration will be held Wednesday, June 3, 6 pm, at Nashville UCC Recreation Park. Donations may be made to Hospice of Dayton or a charity of choice. John's journal of his 16-month battle with colon cancer and details of the celebration of his life are available at itwonthappenthatway.blogspot.com. (Here!)

We're going to write a longer detailed bio here [now online], but wanted to get this out for now. If you're available, we'd love to see you on Wednesday. We're planning an outdoor short celebration around 6 pm (no worries if you arrive later), followed by a picnic. Hot dogs, brats, beverages and homemade ice cream will be provided. If you are local, we ask you to bring a side dish or dessert to share, and a lawn chair. Will provide directions, etc, soon.

Save the Date - Wednesday

Please join us Wednesday evening (June 3) at 6p for a memorial celebration. Venue is between Tipp City and West Milton, Ohio and dress is casual. More details to follow but we're too tired to write more tonight - however, we want you to be able to plan ahead with as much notice as possible. Love to all. 

His Struggle is Over

We feel so fortunate to have had such a positive family evening with Dad last night (see the previous blog about watching the storm). Dad always enjoyed watching storms - he helped his Dad install lightning rods, so storms were good for business. We counted the time between lightning and thunder together as a family one last time. 

Over the last several weeks he encouraged us to miss him but not stay sad. We share his final counseling advice to all of you as well. 

Dad donated his body to science and is headed to Ohio University.  We are making arrangements for a memorial celebration likely midweek afternoon/evening, including a reception afterwards with his favorite - homemade ice cream. Stay tuned here for details. Thanks again for all the support. 

A Change of View

They moved his bed because they heard he liked storms. Window is open and we're hearing the waterfall, ducks, thunder...Also, notice Dad's heron quilt Mom brought in.

Song for my Dad...from my Dad

I brought my guitar music along on this trip, knowing that Dad always wants me to play for him. I probably should've started trying earlier, but I eventually got around to asking for an instrument Wednesday (since we've only made it to my parents' house once since I flew in Monday). My high school friend Jenny brought me hers Thursday morning, the first day we moved to Hospice.

Thursday afternoon I eventually got up the courage to play a few songs. Yesterday (Friday), I finally broke out the song that I wanted to and yet didn't want to sing for him. Back in March of 2010, long before he ever was diagnosed, I received the following email.

A Song for You
We were watching Chet Atkin's special on TV tonight, filmed in 1987, he died in 2001.  A great Nashville legend. Anyway he played a song on it called, "I just can't say goodbye"  Don't know if you have heard it. Mom and I both liked it....I could almost hear you singing it, and I think a lot of people will be moved if you play it. 
Dad

At the time, I put together the chords and attempted to play, but just couldn't do it back then. It's a beautiful song, but I just didn't feel *I* could sing it yet. I did my best yesterday, just for him, when others weren't around.

So here it is folks. You can listen to the original he listened to rather than mine - maybe some day.

The weekend doc (another coincidence - someone who was a family practitioner who had common patients with Dad; Mom recognized his name), just left. Same (not overly concise) report - it could be hours, could be days. Dad is essentially unresponsive now. He's fought a valiant fight, and we are all at peace with what lies ahead. As always, the outpouring of support has been amazing and overwhelming and much appreciated. 

John's Gift

We have spoken again to the very compassionate doctor here at Hospice. She confirmed our feeling that John is in the final stage of Hospice care. No one knows if we are looking at hours or days. 

John is being kept comfortable and, while not always in words, has continued to express his love for Erin and I and those he has been close to. So many have felt the need to express how he accepted them and made them better people. He has been a blessing to so many who can then be confident to continue, however difficult, without him. And I say "Thanks John" for us all

From Joyce

Everyone has been so concerned and supportive of John, Erin, and I during this difficult journey.  I know he would want us to continue to keep you all informed.  It is difficult for us at this time.  We will do our best to update this blog, as frequently as we can.  We will not, however, always be sending the email version of the update.  Feel free to check here frequently to know the current status.  Again we are so grateful for everyone who has showed their love and concern for all three of us.  It has truly felt like a community of caring like we could never have imagined. 

Thank you all.  Love Joyce

Hospice of Dayton

Hi everyone,

Dad has moved to Hospice of Dayton. It is a lovely, lovely place. No more beeping, flashing monitors and less tubes. Everyone we've talked to really appreciates this place and their staff.

Everything is very nature-oriented and just set up to be as relaxing as possible.

The entry:

The view from Dad's room, which many ducks wander past:

And some folks you may know.

As for Dad, right now they're calling his condition "fragile", they consider him only in the first of three stages of Hospice care....however, with all of his various issues, he could accelerate the timing. We may have a better idea tomorrow.

When we first arrived, around 6:00p or so, Mom was very leery about leaving Dad right after landing in a new place. One of the nurses on staff happened to be Mom's second cousin, Donna, who was just about to finish her shift. She offered to sit with Dad while we went to dinner, which was a great transition for us.

We did stay at our local friend's again overnight, but I think we're at enough of a comfort level now that we'll actually make it home tonight. At the hospitals, Mom always liked to be around for the staffing shift, to get reports and answer any blanks, as well as be an advocate for Dad's wishes. That's not needed here, as that's their whole focus, and if we miss the doctor making rounds, we can just call her back to the room any time of day.

Hospice is also very focused on family support as well, and among other things, we've enjoyed therapy dog visits and fresh strawberries plucked from the solarium! We've also made sure Dad knows how much of a gift he's given us by being very clear about his wishes to be here, not only for his peace, but ours, especially in his desire to make this as easy for Mom (and me) as well. Before Dad had ever gotten sick, he had a friend taken care of here and had expressed that if the time ever came he'd like to be here at Hospice of Dayton. And yesterday morning, he expressed that desire at least six times to various health professionals. He also immediately seemed more at peace once he realized we were indeed following through with his decision. I have to say, I agree with him. Have I mentioned it's a lovely place?

Visitors are allowed, any hour of day, and if you'd like to come, it's fine with us. A rough idea of when you might drop by is a great headsup so everyone doesn't show up at once. He's currently still recognizing friends, and often reaches slightly to hold a hand, but is increasingly sleepy with shorter responses. 

So many people have told us how much of a difference Dad has made in their lives. We have passed the messages along, often eliciting a "Wow." We even stopped by the 6th floor nurses at the hospital before we left and they discussed some "good advice he gave me." I love hearing the stories and sharing photos. Please feel free to continue, by sending them my way. Thank you all for all your kindness. I know you're reciprocating the life he lead....which is very cool.

Hospice

Dad was moved to Hospice of Dayton today. Too tired to write more for now. I'm sure you understand.

Tuesday morning

Found this picture in a draft blog post Dad had started. Joyce's cousin Joan was originally going to come up and help plant these, the weekend Dad first came to the hospital this time around. In the meantime, they now make a lovely feature in the hospital room.

Just before we left last night, Dad got pretty animate and said he wanted to know what was going on (or something close to that - basically that he felt out of the loop). We're reducing the pain medication a little so he can be a bit more coherent. He's very clear he would rather be in some pain so he can communicate. But as we've mentioned, there's only so much we know either.

His feeding tube doesn't appear to be working well - nothing getting processed in his stomach. They're going to xray later today and maybe reposition it. Meanwhile, the drain in his liver hadn't been outputting for a while, and that has now increased overnight. Kidney function is somewhere around 15-20%. He's much more alert today and it's been nice to see a smile cross his face every so often. Joking with the nurses which hasn't happened for a while. Has a new nurse today, a big guy named Todd, that we all like quite a bit. Very much still a waiting game, but now there are two of us (not just Mom) to be on call. Dad can't swallow liquids, but asks for ice chips quite a bit and can crunch those up and get those down without much issue.

Mom and I spent the night at a nearby friend's house. Especially good for Mom to sleep in an actual bed, and Dianne’s house was so spacious we kind of even got lost for a while (she's out of town and gave us free reign).

Dr. Lavelle (oncologist) is finally back, which Dad has been waiting for. Really like him. Realized Dad was on Benadryl (which, like many of us, Dad takes to sleep sometimes) so removed that order. Basically, things could go either way at this point, and we're on a "wait and see" plan, trying to let Dad make some of the decisions as to pain threshhold and body position as much as is possible, as he just can't get comfortable. The staff has been great here, trying to time medications and therapy around when they think visitors are coming, and really did a lot to get ready for me yesterday. We've appreciated the team attitude here. 

Thanks, everyone, for all your support. 

Erin

A recap of the last several days....

Erin here again.

Here is a recap of some of the mini-updates circulated amongst some of the family to keep you up a little bit. You get a variety of fonts as I cut and paste from various media on my iPad!

May 15 - Another Procedure

Docs in.  Billirubin up.  Will have external drain inserted today if they can get him on schedule.

[Later]

John had procedure today, finally after 5:00p and waiting since 1:30p in prep room....long story and I'm [Joyce] too tired.  Unfortunately they were unsuccessful at putting in the external drain to his liver.  The bile duct was not dialated enough to insert the tubing.

So need to wait to see if stent starts being more productive or billirubin goes up even more and therefore duct is more dialated so the tubing can be inserted.  Maybe try again Monday or Tuesday.

May 18

Will try inserting external drain in liver again today.  No scheduled time yet.  Because of tumor difficult to get in.  Praying for success with minimal associated problems.

More info....Dr will be Dr. Curry, radiologist.  Will come to John's room to discuss with us before procedure.  Procedure sometime after 1:00. [Note, was moved to next day so could use the anesthesiologist we wanted to use.]

May 19

Today's procedure has finally finished. Lasted about 3 times the expected. One tube was inserted that should drain 60-70% of liver (bile has been building up). The stent was previously draining the other part, but poorly. Unfortunately, as predicted might happen, the stent was hit today and had to be removed. It's up to Dr. Reid (the liver doctor) when and if will be reinserted. They were also planning to put in a 2nd tube if possible, but that is blocked by Dad's anatomy (nothing to do with the cancer, just how he's built). Dad will be in quite a bit of pain due to all the "rooting around" done in there today, but hopefully we'll see good reduction in the bilirubin levels.

May 21

Last night about 10:30 John was taken to the ICU. His blood pressure had dropped significantly. He has a low grade infection. He has been given blood and antibiotics. As of this morning, his BP was almost normal. He is now talking and  alert.  Joyce and Deb spent the night. 

[later]

Hi, I [John's sister Becky] just talked to Joyce.  She said that John is stable and alert.

May 24

Hello all,

Joyce called about 8:00 AM and said John not doing well with difficulty breathing and a number of miscellaneous problems. (John has been in ICU since Thursday).

I [John's Brother Dan] went down about 9:00 AM and visited; they hooked up a different breathing machine to make John more comfortable and get the oxygen level back up.

John also has VRE that is a hospital acquired infection from what I understand. [Note, it is actually an infection caused from stirring up the bile already in his body, a very dirty environment. - Erin]

I checked in with Joyce about 12:40. Erin is on the river in Western Colorado and has been out of cell coverage, but they connected and Erin will be flying in once a flight is arranged.

Please keep John, Joyce and Erin in your prayers.

May 25, approx 6:30p

No real change overnight, though he did sleep very soundly - a relief to Mom. I (Erin) am here now, and he definitely knew who I was and reached forward to hug me. Oxygen levels are good right now, and they've actually been able to reduce the flow of it. Kidneys are only functioning about 15%. He also keeps getting hiccups - to which Mom and I aren't as sympathetic as many of the others, as he has been known to make quite fun of our own hiccups in the past. After a few sets, I said, "Oh, I hiccup so much louder than that!" And he let out a really big one. He's now really part of the family. 

Having a lot of trouble swallowing so they have inserted a feeding tube. He also likes chomping on ice cubes, which one of the nurses has flavored with grape juice. He needs a little of this any time he wants to talk. Doesn't "chit chat" but he perks up to say hello and goodbye to most people as they visit.

From Erin - May 24th

Hi Everyone,

For those of you that don't know me, this is John's daughter Erin.

Just a quick note to say that Dad has been in ICU since Wednesday and the prognosis isn't good right now. He's still rather coherent but we're just not sure what may happen next. I'll try to update this blog with some of the in between things that have happened, but am not sure how much I'll get to it - plus if you're signed up for updates, it may take up to 24 hours to receive notice of them.

I am flying out early tomorrow (Monday) morning from Colorado to Ohio. If you have our phone numbers, you can try that. Just know that of course everyone is calling, as he is loved so much.

Through all of this, I have been so proud of my father in his honesty in dealing with this and sharing it with all of you. While it's hard to go through, all three of us have so appreciated all of the support you continue to send our way. Thank you.

Erin (and John and Joyce)

May 13, 2015 Update

May 13, 2015

Health Update

Since last update on April 3,2015

Generally these last 2month have kicked me in the “Arse” as the British say.

The side effects for a few days after treatment have been challenging. Different since changed to Camptosar for last three infusions. Very poor energy level after Camptosar for last three infusions. Burning hands. Very dry nasal passages, neuropathy, poor appetite.

Then life got interesting.

April 24^th To ER 2 am as was jaundiced, had temp of 100.5, and white blood count and associated numbers down. Bilirubin count up. Admitted and placed on antibiotics of course. Diagnosed with neutropenic fever.

April 24- Had planned to go to Knoxville, Tennessee today to visit Joyce's cousin, Joan and her family—didn't happen. Very disappointing.

April 26^th Released noon from hospital

^{Of course, chemo postponed.}

^{May 7, Thurs Met with Dr. Reid to prepare for liver duct exam.  “Endoscopic retrograde cholangiopancreatography” ERCP. When at the office visit, had me do blood work. My blood was thin. Also did a ultrasound of both legs to check about the blood clot.}

^{May 8th-Friday postponed chemo}

^{May 9th. Scheduled ERCP on Saturday AM. Checked my blood, still too thin. Dr. Reid admitted me to the hospital to supervise getting blood less thin. Got 5 units of plasma, plus antibiotics}

^{Decided it would be less risky if I had a venous umbrella screen to prevent any blood clot moving.}

^{May 10th. Sunday AM Dr. Yanneta installed the screen. I didn't help Joyce much to celebrate  Mother's Day.}

^{May 11th. Monday, Dr. Reid performed ERCP, placed a stent in my liver duct to help drain bile. Decided to learn more of the words to the song They Call me Mellow Yellow by Donavan 1966}

^{May 12th Tuesday- off and on severe abdominal pain. Drowsy}

^{May 13 Still in hospital....liver functions slightly improved Dr. Reid wants to stay in hospital for a few days with better Bilirubin scores. Feeling much better.}

^{May get out Friday, unless Dr. Reid decides to put in tube to liver to drain to outside of body (percutaneous transhepatic biliary drainage)}

^{No chemo his week.}

I may write some  blogs  of a brief nature, or post some photos, rather than send an email.

http://itwonthappenthatway.blogspot.com/

The support and encouragement for not only me but Joyce, too, has  been impressive.  If you see her, don't ask how John is doing. Ask how she is doing.

As usual feel free to share with others. Hopefully I encourage others to not hide or be ashamed of cancer.  I often enjoy helping someone.  If you hide your problems, you are denying others the opportunity to feel good about helping someone.

John E. Swank

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

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

Amazing friends and family

Looking forward to many friends and family traveling in this weekend to share with us our celebration on Sunday.  Our daughter is coming from Denver, Sister and husband from N. Carolina, Joyce's sister from California, her cousin (and husband) from Knoxville, TN.  We also have friends from Wisconsin and Michigan coming in as weather permits.

John's Health Update 01/12/2015

Update 01 12 2015

Those who have been reading these from the first update in February have realized that I (John) write the whole update. In our family, The Guy Version means “just the basic facts.”  The Gal Version gives much more detail.

Guy Version

• Most things about the same
• Office closed and moved out
• Our open house is this weekend, January 18^th, 1-4 at Comfort Suites, Troy, OH 

Gal Version

• Health situation fairly stable.
• Last chemo was on Friday, January 2, 2015.
• Main issues are pain and numbness in hands in feet, worse after chemo, gradually reducing in intensity until next chemo.
• Still painful and frustrating—Has become the new “Normal.”
• Basically, no serious/crisis situation since mid-September.
• Getting back on the pump has made a great improvement.
• We officially closed our office on November 26.
• We wrapped up moving out on December 31.
• Our home is very crowded these days as we are taking time to sort and shred.
• We are required to keep client records for 7-10 years, so have a “file room” now in my workshop area.
• We moved the equivalent of 60 file drawers full of things home.
• Hope those who are able will join us for an open house at Comfort Suites in Troy. Sunday, January 18, 1-4pm.
• Perhaps a first for our area, we will have a “Popcorn Bar.”
• We are using it as a fundraiser for Partners in Hope, a great local program started by area churches to do more than give handouts. We are asking for donations of items that in Ohio are taxable items, thus can't get with food stamps. (Toiletries, laundry detergent, toilet paper, paper towels, diapers, etc)

John Swank
Joyce, editor-in-chief