"Grandma Pam"

Pam continues to amaze me! As she mentioned in her last blog, her journey has taken a new turn with radiation treatment the next 5 weeks to help her gain more functionality in her left arm. (In case you didn’t know, she is a leftie!) She started radiation therapy Thursday.

 It was a longer session than will be typical as they wanted to position her just right in the “linear accelerator” (pictured here—no, that isn’t Pam in it!) and all the necessary markings were on her body to ensure that the radiation was hitting the exact targets.  If she ever wanted a tattoo, she now knows what it feels like with the different black marker-like lines and circles on her upper body. We were laughing because one of the markings looked like a continuation of the pattern on the shirt she was wearing!

Pam was a real trooper laying flat on her back for almost 90 minutes, left arm extended, head tilted to the side, knees propped up and body completely still. Her back has been bothering her and I know she was really ready to be done though she never complained. Fortunately, treatment sessions will last only 15-20 minutes each day. She really likes Dr. Patel who is overseeing her radiation treatment. 

I also wanted to quickly follow-up on the news in her last blog about the latest Dedinsky addition. Pam is a “Grandma.”  No, while Kendal and Scott are high achievers, they didn’t work that fast! However, their gift to Kaylin for helping plan their incredibly beautiful and fun wedding was a miniature Golden Doodle, Louis. Kaylin informed me that his official name is St. Louis Ludwig II. Pam is crazy about “Lou” as you can see from the photo of the two of them below.

Your love, thoughts and prayers continue to give her strength. Keep ‘em coming. Thought I would close with something I heard earlier this week. The opposite of fear is faith and Pam is indeed walking by her faith! You inspire me, dear friend. Love ‘ya!

-Kim Graham Lee

Something New

Our last blog was SO long ago. In that time, we cerebrated a marriage, two graduations, and the continued success of chemotherapy to keep this cancer at bay! As many of you know, the weeks following Kendal’s wedding have been a bit harder for me. My abdominal pain has been more consistent but continues to respond to pain medicine. The bigger problem has been my left arm.  The pain is the worst two days after chemotherapy, and I have had significant functional loss. For example, it is very difficult to write so my girls have been having to help me pay bills. J

As a result, we have decided to hold chemo for a few weeks to do radiation to the tumors above my clavicle and under my arm. The thought is that those lymph nodes that contain cancer are pushing on the nerves that run in that area and control strength in the hand and arm. The goal of radiation is to shrink those lymph nodes. Meanwhile, I am also having a biopsy of one of the lymph nodes. We will send that tissue to a lab in Boston that tests tissue to find out what kind of chemotherapy the cancer is potentially sensitive to. With that information, we will resume chemotherapy after radiation.

The logistics of the radiation are as follows. I will get a total of 25 treatments over five weeks (Monday thru Friday.) The radiation will be painless, and the major side effect is fatigue. The fatigue will be cumulative so that by the end of the five weeks, I will likely be pretty tired. I hope and pray that I tolerate this new treatment as fluidly as the last six months of chemotherapy.                                                                

So much for the fun stuff. My hair is starting to grow back. Where the hell did all this gray come from? I’ll just call this chemo color. My cranial prosthesis (wig) carries the color for now. Ellie has joined the work force with a vengeance. She is now working as many hours as sleeping. I get the sense that IU will not come soon enough. For those of you who need an update on Lewis: he is one cute puppy. (This puppy was a gift to Kaylin for helping to plan the wedding.) He does have though one very annoying habit. Greg calls him the “Ninja Shitter.” We are finding pooh in rooms that no one has seen him in. But he is cute and that is what saves him. The big dogs are tolerating him better. Tally and Lewis play like puppies until Tally has had enough and then she just lays a paw across his neck. Game over.

The newlyweds seem to be adjusting well. Kendal was home this weekend to go to a wedding in St. Louis. She is a remarkable young woman. Her help and kindness are invaluable. I guess all the dirty diapers were worth it. Kaylin has remained busy . Lauren is going to have a minor surgery this week so we will be couch buddies for naps. Thanks you all for the continuing prayers, visits, phone calls, lunches, parties at chemo  (they had to put us in the back room because we make too much noise!)  Love PAM

Life Still Goes On

We have been negligent writing blogs the past few weeks (hence the deluxe edition today.) It is a busy time for the Dedinsky household! The girls and Scott were in Europe visiting Lauren the last ten days of March. They returned to wedding plans amid work (or perhaps work amid wedding plans!) The girls found the time to throw me a birthday party the day before Easter. The party was small (but loud) and a great opportunity to reconnect with longtime friends and celebrate with those who have been so supportive these past few months.

One of the biggest blessings this month so far was a visit from a friend who I met during Greg’s cardiac fellowship days. Roxy babysat Kendal and Kaylin when they were small while our husband’s spent nearly all their hours at the hospital training. We reminisced about those crazy days over wine recalling the days of “Stitch and Bitch” with other resident wives. (Neither of us ever managed to complete a knitting project but man could we do the other!) It was a quick but wonderful twenty-four hours before Roxy had to go home to Arizona, but we still managed to find time to hit up TJ Maxx fast and furiously - just like old times.

I completed my fifth cycle of chemo today. Our last scans about two weeks ago showed a small decrease in the size of the lymph nodes in and around my arm. The pancreatic tumor is unchanged from our last scan. We have elected to continue on course with the same chemo regiment for a total of six cycles. This puts us into May at which point we will need to make more decisions about the next step.

As for me, I need a nap earlier in the day than I did in January, but my side effects continue to be irritating but not debilitating. I have trouble with sensation in my left hand and arm but have no problems with strength. I guess my right hand is going to have to start doing some work for the first time in my life. The doctor thinks this loss of sensation is due to chemotherapy and decided to decrease the dose of one of my chemo medications by 25%.

One week from today we will have a wedding to celebrate! We got out our wedding video this past week. Damn we looked good despite the bad video quality of 1983. I eagerly await the arrival of family next week, and anticipate the house will need a thorough cleaning this weekend. Those tasks will be delegated to my wonderful children and husband as mom has cancer and shouldn’t be doing house chores. J I need to store my energy for the excitement of the coming week and the weeks after that when we will celebrate two graduations. I am thankful everyday that there are so many wonderful distractions in my life as I endure this challenge! Looking back to January when I was first diagnosed, we had no idea how I would feel this week in April. By the grace of God, I haven’t missed a beat.

I continue to count my blessings and try every day to embrace this road that the Good Lord walks with us.  Thank you for your continued prayers. I will end with a poem:

Look on the Bright Side

For every negative that consumes your happiness,

Affirm two positives that sustain you.

For every “should’ve” you wish you’d done,

Acknowledge something you’re glad you did.

For every loss that has altered your world,

Count from it something you have gained.

For every limit that has ever beset you,

Consider your possibilities.

You can’t always change the way things are,

But you can change the way you wish to see them.

Never stop looking

For the brighter side and beyond.

Eric T. Moore

Life Goes On

In all the craziness that is part of our daily lives, it’s been over two weeks since the last blog. I have been remiss not because I have been feeling particularly under the weather, but rather life goes on despite chemo. And at our house, we have quite a few irons in the fire!

I did finally have to face the reality that I am a chemo patient last week. I thought I would continue to skate through these treatments with little to no side effects, but after a trip to St. Louis with Kendal for a bridal shower after my last treatment, I was faced with significant myalgias, weakness, and fatigue.  I know that this is a small price to pay as we continue to pound the tumors that threaten me.

In the midst of feeling sub-par, I made a trip to the oncologist to make sure that my labs looked okay. Turns out that (just as I expected) my hemoglobin has dropped a few points since I started chemo. This is likely the source of my increased weakness and fatigued legs on the treadmill every morning. In addition to this, I may also be feeling the accumulative effects of the chemotherapy as I start my fourth round.  This past week with no chemo has seen much improvement, but I still need my afternoon nap! When I don’t get that hour of sleep, I certainly pay the consequence. Much to my surprise, utilizing the  meal train during the week ensures that I get my rest time as I don’t have to worry about putting food on the table for dinner. Thank you all for your continued generosity!

This morning all the girls and Scott leave for Europe to see Lauren who has been abroad since January. Regretfully, Greg and I will not be able to accompany them as I have continued treatments these next two weeks. It is imperative that I continue to stay on course, and while I know all the girls wish we could share in this family experience , we felt it most important that I continue chemo on schedule. The plan is for a trip to Europe for Greg and I later in the year! We will get to practice being “ empty nesters “ for the next ten days. How is this possible? I ask myself.

In other news, Kendal placed for a surgical residency at her first choice, George Washington University in Washington DC. This ensures that Kendal will be able to enjoy newly married life by living in the same city as her soon to be husband! (Scott will be his residency in OBGYN at Walter Reed Military Hospital in DC as well.) What a relief! At the match day party, we got a preview of the band that will be playing at Kendal’s wedding. Bring your dancing shoes and hold onto your wig (if you wear one) – they were fabulous!

I have continued to reconnect with friends. Despite the challenges of cancer, one of the many blessings has been all the phone calls, meals, and conversations with so many people who have touched my life over the years. I am so grateful for all the love and support that continues to come our way.

I leave you with this:

God’s Promise to Me

“Without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him.” Hebrews 11:6

Pam, you rock!

Wanted to share with everyone that Pam and I had a very special evening this past Thursday night. It was too much fun! We, along with 2500+ people (mostly in the 50 -60 age bracket), went back 35 years in time and listened to Peter Frampton at the Murat Theatre here in Indianapolis. In Pam’s own words, “WOW!"

Pam didn’t recognize Peter when he first took the stage. He’s traded in those long curly, golden locks for a white ring around his bald head. But, man, oh man, he sure hasn’t traded in that voice. He sounded just as good as when he first recorded “Frampton Comes Alive.” In case you are wondering, Pam looked it up and confirmed that he’ll be 62 next month. At the concert, he and his group played the entire “Frampton Comes Alive” album and then shared some new stuff.  (His rendition of Soundgarden’s Black Hole Sun was awesome!) Loved how he kept referring to “Me Comes Alive” throughout the night. He played for almost 3 hours and was sure having fun up there!

Speaking of fun, I have to tell on Pam. There were two 60-something guys in front of us who were hysterical. Looked like they came right off their Harleys. Pam couldn’t keep her eyes off of them. Actually, they provided us with some additional entertainment all night long.

A couple of times, Pam was threatening to throw her “cranial prosthesis” on the stage. For those of you who didn’t catch it from the first blog on Jan. 31, that’s what she calls her “wig.” She restrained herself. As you can tell from the attached photo from before the concert, she looks great in her new hair. By the way, we have no idea who the guy behind Pam was. He saw the camera and decided to jump in. Does anyone recognize him?

You know I was thinking about Pam and Peter Frampton. They have a lot more in common than just a lack of hair right now. Both have wonderful smiles and an incredible love and gift of music. Pam was amazed at what he was able to do and kept pointing out the difficulty for any musician at any age to play the rock and acoustic guitars the way he did. I had my very own music expert right beside me.

Pam, you do amaze me. You have been so strong and have had such a positive attitude. You are doing so well with the treatment. You continue to smile.  You do rock, girlfriend, and thanks for sharing a special night with me. Next week, make sure you play some Frampton for Dr. Bhatia!  (He had no idea who Peter Frampton was!) J

Kim Graham Lee

Something Positive

         The last few weeks have been a whilrwind! First Pam is doing well. The second round of chemo was tolerated with very few symptoms. In fact Pam asked one of the nurses if the first dose was a placebo. They assured her it was not. It seems that the drug that Pam got to stimulate her bone marrow for some low counts really knocked her down after the second part of round one. This did not happen after the second part of round two. She is still amazing the family and multitude of friends with her optimism and energy levels. Over the last two weeks we had the company of her brother and family from Texas. Kent was much happier about his sister once he could see how well she was doing. It also seems that Kaylin and cousin Amanda have quite a few things in common and wondered why we had kept them apart so long! It was a wonderful visit. There was much laughter and Pam is a wonderful tour guide but seems to have frightened a couple of elderly women in the car next to them when, with encouragement from her brother, removed her cranial prosthesis and made faces at them.
           This weekend was one of Kendal's wedding showers. Grandma Nelda, Penny, Jackie and Don, Jane and Anna arrived on Thursday/Friday. It was noisy, choatic, and funny: a true Uphoff event!
           The best part of the weekend was our meeting with the Oncologist on Friday. Earlier in the week Pam had a repeat CT Scan.  The scan showed that the tumor was showing signs of response to the chemo and no growth. It had not shrunk any yet but the center of the tumors were starting to dissolve. We do not know what this means yet prognostically, but it did mean that we are staying on the same chemo regimen. I consider this good because she is tolerating this regimen well. The plan is for repeat scans every two cycles and reassess.
   I know prayers and thoughts from all are responsible for our success. Keep calling and come by if you are in the neighborhood!


Love to all,
   Greg

Snapshot of the Weekend

Life at 4403 Meridian these days leaves a multitudinous sea of impressions:  from unvarnished seriousness to wacky, rollicking, over-the-top humor, crackling through the family and friends like an out-of-control power station.  In other words, pretty normal.

Pam, of course, is power central, respecting the challenge of the day but determined to beat it.  I am tempted to use her vivid language, but I’ll simply invoke Mark Twain’s sage observation, remembering someone who had struck his thumb with a hammer, that colorful language sometimes can provide a measure of relief denied even to prayer. 

The overriding impression of activity at 4403 Meridian is many moving pieces:  Kendal making wedding plans, Kaylin breezing in and out as a young professional, Ellie laughing delightedly between bouts of seriousness as she thinks about college, Lauren beaming happily from a computer screen as she reports on her sojourn in Rome.  While Greg is off to Alabama to run in a marathon, Pam joins me for a movie that turns out to be a portrayal of wolves devouring people in the Alaskan wilderness (don’t I know how to pick ’em!) 

There is another layer of this experience.  Beneath all the activity and the good humor is an awe-inspiring tidal wave of affection, found in the many kindnesses of family and friends as they rally to Pam.  I won’t dwell on this, because there are no words that can describe it, except to say it is an amazing source of strength.

Many lovely moments:  Friday evening, chatting in the living room with a fire in the fireplace, as Kendal and Kaylin vie gracefully for a comfortable share of radiant heat on the rug in front of the hearth; Kendal and Greg speaking about surgery and other medical matters in the slightly foreign language of doctors; friends Pam Ross and Trudy lighting up Flynn’s on Saturday night with their raucous good humor, inspiring Kaylin and Ellie into a comedy riff of their own; Pam exasperated as her beloved Pacers fail to maintain a run that might have given them victory; Scott holding Kendal aloft in his arms, crossing-the-threshold style; a wonderful video of Pam’s family, prepared for her Mom’s 80^th birthday. 

One event will remain in my memory as a kind of snapshot of the weekend.  Ellie asked me if I was familiar with “Pandora.”  I remember Pandora from childhood as the mythic owner of a box with all the troubles of the world, troubles that flew out when Pandora opened the box, leaving only hope behind:  a gloomy story.  The name “Pandora” received a happier association two years ago when Lauren joined me to see “Avatar” in Chicago.  In that experience, Pandora was the name of a magical world where one could tame and fly dragons.  Ellie’s Pandora, however, was neither of these.  Instead, it was a website where one could enter a favorite song or composer and the website would play similar songs or pieces.  Far from being a source of troubles, Pandora, with Ellie’s guidance, became a source of music.

As I reflected on the activities at 4403 Meridian, it was easy to see how a world of troubles could be transformed into music.  If gloom dared to show up here, it would be so bewildered and frightened that it would turn at once and flee.  Pam showed me a list of things that cancer could not do, which concluded with a paraphrase of the Apostle Paul’s observation that there was nothing that could separate us from the love of God.  There was no separation here.  Instead, there was laughter.  And there was much affection.  And these things were the best music.

Carlisle a/k/a Uncle Carlisle (husband of Greg’s first cousin, Mary)