The Weather's Frightful, but the Fire is so Delightful!

We've joined all our Florida friends and neighbors in settling in with a cozy fire, crackling in the fireplace, as winter finally descends on Tampa. These are great days for us with lots of reading, chatting and tv. John's condition keeps him from getting out much, but this week he managed to get to three separate doctor appointments that should help his life be more comfortable. He received his second infusion of Zometa on Wednesday, which should help strengthen his bones. On Thursday, he was back at Moffitt for his second guided cortisone shot to help with the pain in his right hip. And today he completed a thorough eye exam with the conclusion that removing a bad cataract in his left eye should help him tremendously with seeing more clearly and thus, being able to read more easily. This will be a huge help to him as reading has always been his favorite hobby and his poor vision has made reading much more of a challenge. His energy is up today and we look forward to his first visit with a home physical therapist this afternoon. Later, my sister Dee will drop by, as she does every day, to regale us with tales of life and children at St. Mary's School. We look forward to our entire family's arrival in a week or so and an extended visit with all of them through New Year's.

Thanksgiving was a time for THANKS

Our family gathered around a bountiful table on Thanksgiving Day - just a quiet group of us - ever so thankful for the blessings we have. Will and Lauren gladly escaped the frostiness of Chicago for a few days in our Tampa warmth, and Dee's son, Sam, was home from Stanford. We enjoyed quiet visits, tv football and reading while they were home.

John had a rather non-eventful doctor's visit today and the outcome was that he will continue the treatment regime he has switched to for the immediate future. There will be further brain MRI and body CAT scans in the new year, but for now, we are hoping for smooth sailing through the holidays. The whole clan will be in Tampa, so our home will be filled with loving energy on a daily basis! We so look forward to gathering them all in.

Our Annual Christmas Card mailing has been curtailed for this year. So, for all of you, please know we wish you happiness and health for 2011 and a wonderfully blessed holiday season.

A Brief Stay at Moffitt

Things certainly never get dull around here. We noticed some swelling in John's right ankle over the weekend. Our doctor requested John's presence in the Moffitt Direct Referral Center (sort of a triage emergency room) on Monday and ultrasounds showed a blood clot in his leg. Because of his history of brain tumors, he is not allowed to take a blood thinner, so inserting a filter to catch any breakaway clots was the required course of action. They kept him overnight Monday and we waited all day Tuesday for the 20 minute procedure to be completed - with no complications. My devoted sis, Dee, took the day off to be with us which was a huge help. We returned home Tuesday night at 8:30, tired as always from hospital time, but so glad to know the filter is in place. Hopefully John will return to his physical therapy efforts on Friday and we will enjoy a wonderful Thanksgiving with Will, Lauren, Dee and her son, Sam - home for the holidays from Stanford.

Cortisone shots today

Conditions remain much the same here since I last wrote, Oct. 17. Radiation treatments have concluded and we continue to hope that they will help with John's hip pain. Likewise, the x-ray guided injections today of cortisone have a likelihood of reducing inflammation and thus, relieving pain. John will soon start on another kidney cancer drug, Afinitor, as results from the Nexavar he has been taking have not all been as we'd hoped. Upon much urging from friends and family, we are getting some home assistance three afternoons a week, which serves as a huge help for me. We look forward to a visit next week from John's sister, Margaret and his mom - both of whom will drive down from Atlanta.

John home and enjoying family visits

John is home from rehab and working hard on regaining his strength. Our son, Will, visited last weekend and his stories of his new hometown of Chicago and of life with his beautiful new bride were energizing. Our daughter, Anna and grandson, Soren, arrived on October 14. We delayed my birthday celebration so that Soren could help with blowing out my birthday candles! Soren and Anna baked a delicious coconut cake and our special seafood dinner was provided by Jeanne Doney. Having an 18 month old around is really energizing!
John is going to physical therapy three times a week at TGH and is also having daily radiation treatments for cancer in his hips. We have more family arriving later this week, which is such a blessing.
Our plan, if all goes well, is to have a family Thanksgiving Dinner at the Yacht Club.
We want to express our deepest thanks to everyone who continues to support us. The twice-weekly meals on Food Tidings help us out more than you could ever imagine. Such a simple thing, and yet, so --- so very helpful. Keep those positive thoughts and prayers coming!

Release from rehab

John's been doing very well, over-achieving as usual, and has beaten his projected release date from TGH rehab by a week! Everyone agrees he will regain strength and improve more quickly at home. Our son, Will, is heading home for the weekend, which will make John's homecoming even better. John's latest CAT scan shows a small bit of new activity with his cancer, so the medical team plans on changing his medication as soon as radiation treatment on his hip is completed. It remains an ongoing challenge to get "far enough away" from tough treatments to enable him to regain strength and some semblance of normalcy, but we continue to try!

Rehab Begins

Even though John's hip surgery went well on Sep. 15, the remnants of pain and weakness continue to plague him. He spent a few days this week in the hospital at Moffitt getting thoroughly checked out. The good news is that most of his symptoms are being caused by strong medications, exhaustion and dehydration - NOT a return of cancer activity in his brain. He's graduated from hospital care to rehab at Tampa General, where they will do a full evaluation on Monday and begin his rehab workouts. He may be there for a couple of weeks, in Room 410 - he has a great view of the water and downtown Tampa - so we are trying to consider this time as sort of a medical "spa."

Surgery Complete

John was in the hospital most of last week. His hip surgery was completed on Wednesday, the 15th, with the surgeon expressing "cautious optimism". Arriving home Friday evening, we realized the huge obstacle ahead of us now is physical rehab. The hip pain is diminished, but the cumulative effect of all he's been through will require physical therapy to rebuild his strength. With mobility significantly diminished for a while, we aren't out and about much now, so Food Tidings is open for business again. Thank you to all who have continued to ask if you can help in this way, and please don't overdo, we know you're busy! Just picking up something simple, small, and ready to go while you are already shopping is what we have in mind, as running errands is difficult right now.
Best to everyone,
Ellen

Autumn approaches

And with it, changes in John's health picture. We did "make hay while the sun shone" and had a marvelous summer, complete with precious memories and lots of time together as a family. As the summer weeks went by, however, John's right hip began to pain him and an MRI showed that cancer in his hip was causing the discomfort. He's now scheduled for a surgical procedure in mid-September which should alleviate the pain and get him back on his feet again. New bone scans and CAT scans are also right around the corner - totally unpredictable what will be found. We are taking these hazy days of September easy, staying close to home while we await his turn in the operating room.

MRI Today Shows Good Progress

John had the third MRI on his brain today and the results were encouraging. Of the 5 tumors he started out with, only 3 remain! And those have continued to reduce in size since the beginning of this saga, Feb. 15. We were so happy to see these results...as you might imagine! He will continue on the cancer inhibitor drug, Nexavar, until early October, when a new CAT scan will let us know if the cancer remains contained in the kidney or has spread elsewhere. Until then, we plan to enjoy our summer days as much as possible and remain so appreciative of everyone's interest, support and prayers. Hopefully, this will be the last blog update for a while. And that is great news for everyone!!!

Wedding a Total Success!

Our son, Will, and his lovely bride, Lauren, were married yesterday in a beautiful ceremony - all went according to plan! John has been having a wonderful trip, filled with lots of activities and people. He even danced at the reception - something that would have been the stuff of dreams only a few short weeks ago. We now have planned some "down time" for us and will be here on Lanai for four days of napping, reading and relaxation while the happy couple wings their way to a honeymoon in Fiji.

Hawaii is beautiful!

We have so enjoyed seeing family and friends, old and new, as we vacation for a bit in Hawaii prior to Will's wedding on July 16. John's hold up very well, pacing himself with naps and snacks, and looking forward to his role as host of the rehearsal dinner on Thursday night. But his favorite occupation of all, which can take place anywhere on the planet, is to play with our grandson, Soren!

Will's wedding is fast approaching!

John's mom and sister drove down from Atlanta for a few day's visit, which was wonderful. We got to dine "out" for a breakfast and a dinner, which we figure is good practice for the "real world" of Hawaii. Having family around, talking about everything under the sun, is the best medicine of all. We were fortunate to have a lasagna meal from the Dobbins which fed us all, and last night enjoyed a yummy meal delivered by Leah Martorana from Fowler White. We really feel like we are in the final count down to departure as suitcases are coming out, notes are being written for the housesitter, and the fridge is being cleared of all our lovely leftovers. It is a miracle to be at this point, being able to say, we are going to our son's wedding! Prayers do get answered.

Awaiting the Wedding

We had a wonderful, impromptu visit with Anna, Nathan and our 14 month old grandson Soren. He's walking all over the place, keeping us and his parents busy! We got out a baby pool for splashing outside, his parents had time for jogs and bike rides and we all spent plenty of time just visiting and enjoying being together. Fowler White (Deb Brewer at the helm) brought in a big meal for all of us from Bailey's which was savored with great enthusiasm. The weekend before they arrived, we were treated to a Juneteenth meal (complete with Big Red soda, which is an acquired taste) and after Norman educated us, we were able to celebrate a completely new holiday! Thank you again, dear friends, for continuing to support us in such a meaningful and helpful way. John continues to take early morning walks, goes to physical therapy and listens to CLE cd's, which help pass the time as we await our departure for Hawaii and making precious new family memories at our son Will's wedding on July 16.

UNEXPECTED DOC APPT RESULTS IN GREAT NEWS!

John has been suffering from a swollen head (no, not a Big Head) and this condition had him in the Moffitt "Emergency Room" on Tuesday. The swelling has not involved his breathing, just his beauty. But it's been disturbing enough that Dr. Fishman decided to move the June 22 appointment up to this morning. We discovered that the swelling of his eyes, ears, nose and face is a side effect of Sutent (even though he's been off Sutent for a week) and that it will go away with massive doses of Benedryl over a few days. But the GREAT NEWS is that, while we were with Dr. Fishman this morning, we got to review the CAT scan from Monday.

The scan shows the tumor to be about 15% smaller. But, even better than that, it clearly shows that the blood flow to the tumor is greatly diminished - which is the actual result we were hoping for. Dr. Fishman said that the goal with Sutent had been reached - starving the tumor's blood supply. He really liked what he saw and said the next step is to keep John on a Sutent-type drug on an open-ended basis. Since Sutent has given him so many adverse side effects, the doctor recommended switching to Nexavar. John is to start on this new medicine after his side effects disappear and only at half-strength during our time in Hawaii. Then we will meet back with the doctor to reassess in late July. We are SO excited that our trip to Hawaii has now become a super reality! We are ready to take it easy and make some precious family memories in such a glorious location.

CT Scan Taken Today

We spent another quiet weekend, punctuated nicely with lovely Italian food provided by Deb Brewer, and another always-welcome delivery of Flip Miller's home baked breads. Thus fortified, John got through the morning's medical testing with ease. We now must wait another week to hear the results of the CT scan - and will learn just how effective Sutent has been on his kidney tumor.

Last Week of Sutent

Thank goodness John is heading into the home stretch with the inhibitor drug, Sutent. We scuttled the Sea Island trip planned for this week, because the drug is so draining, it's hard for him to feel like himself. We all look forward to his being off of it for a few weeks, regaining strength and getting geared up to attend Will's wedding. Since we will be bringing Tampa to Hawaii, John plans to wear his pirate outfit to the rehearsal dinner, and our centerpieces will be Tampa themed, complete with explanations of black beans and rice, cigars, pirates and sports teams! We were treated to dinner this week by Laura Barber, so thoughtful and welcomed. And ladies, if you are looking for a fellow who can really, really cook, check out Roger Robson! His "meal" was most amusing and memorable - and certainly would keep, with no preservatives, for decades! When I opened his foil wrapped "dish" I found fabric desserts festooned with restaurant gift cards and a funny note explaining how fortunate we were to escape his home cooking. It's amazing how our friends continue to lift our spirits in creative ways. We have reasons to smile every single day.
(posted by Ellen, uploaded by Dee)

Halfway thru this round of treatment

This has been a quiet week. We are getting better at predicting the ups and downs of the medication, making small adjustments that help improve the quality of daily life. John continues to work in daily short walks and goes to physical therapy twice a week. He's been touching base with more folks by phone. He seems stronger, relaxed, and is tolerating the lack of activities like a champ. We enjoyed support this week from Marguerite Timmel and Nancy Crane - the meals were delicious! Notes from friends and family brought us up to date and keep us amused. We are looking ahead to June and hoping to make a trip to John's family vacation home in Sea Island to see his mom and sister and have a change of scene. Hopefully, he will feel up to the ride, with Dee and Ellen taking turns at the wheel.

Change of Watch at Tampa Yacht Club

Tuesday evening, John was able to attend the Annual Meeting at the Tampa Yacht Club, which is also called the Change of Watch. He accepted the burgee as new Commodore, made very brief remarks, and headed home. We're so grateful to Norman Stallings, who provided transport and a sturdy arm. John was overwhelmed by the outpouring of support shown to him in this first "public" appearance since this saga began. Arriving home exhausted but happy, he recovered quickly. We've dined on Cuban food from Mary Margaret Docimascolo, Chris' Cookies from the Gonzalez family and a smoked turkey from the Chambers. We feel so blessed and thankful for all the help and good wishes. It truly is making a positive difference.

Sunday afternoon

John continues to go to physical therapy and work on this at home as well. He started taking Sutent (the inhibitor) again on Friday, we hope this won't increase the fatigue which has abated a little bit. He will continue the Sutent for four weeks and on June 22nd have a reassessment at Moffitt. He's eating well, thanks to many friends offering tasty dishes. Harriet Plyler brought over lamb curry and Leah Martorana provided Thai dishes, all delicious and much appreciated. It's been so helpful we extended the food calendar through June. You can't imagine how supported we feel, thank you so much for notes, food offerings, and emails, it all helps and John remains patient and positive.

John's physical therapy continued today with an hour's workout, followed by a restorative smoothie! His regular doc also cut back on some medication today that might be contributing to his general feelings of tiredness, so the saga continues as we work to get him back on track. A pasta meal from the Doney's is also what the doctor ordered - didn't they always say eat pasta when you work out?? Thank you so much to Jeanne for thinking ahead. :)

Some improvement

John has been doing the PT exercises and eating more for a couple of days and we're seeing a little improvement in stamina. It probably helps that he is still on a break from the Sutent which resumes on Thursday. Yesterday he rode out to Moffitt with Ellen for some more bloodwork which was an exhausting event, but mission accomplished and back home for a rest. Flip and Rick Miller came by this morning with home baked bread to go with her strawberry-banana and champagne jellies, perfect for Saturday brunch, and we look forward to a salmon dinner this evening being prepared by Andrea Zelman, thank you!

John is well enough today to use his Blackberry for e-mailing, so we are all getting a little work done and enjoying this sunny day.

Physical Therapy

Will and Lauren flew back to CA Tuesday; we so enjoyed their company and all they did for us while here. Will lent his incomparable high tech talents to all of us, and Lauren her always cheerful willingness to help with whatever presents itself.

Today John had his first PT appointment with Nan Morris. He was happy to have an idea of what to do to build up his muscle strength and will return for more therapy with Nan, and following her instructions, now has a work out program for home. He feels better already!

This, combined with new prescriptions to address weakness caused by the radiation which compromised the thyroid gland, give us all hope for some strength returning in a few weeks.

Dinner tonight was a beautiful seafood crepe menu courtesy of Sharon Pizzo. Delicious! Thanks to everyone for your continued support.

Monday, May 3, 2010

It's been a festive week here, with family coming in from out of town to celebrate Dad's 60th birthday. Anna arrived on Wednesday evening, in time for his actual birthday on Thursday.

Dad unfortunately spent much of his birthday on an unplanned trip to Moffitt, where the family had questions about the fatigue that has been dogging him in the past few weeks. Happily, the doctors were very reassuring, finding no neurological problems or other issues to worry about. They did a few blood tests and seemed confident that either the fatigue would fade as he completes inhibitor treatment near mid-June, or else it was due to something easily treatable like a hormone imbalance.

Thursday also marked Dad's final day of his current round of medication, which he is happy to put behind him!

Late Thursday night, Lauren and I came into town as well. On Friday, we properly celebrated his birthday along with Lauren's and Aunt Dee's. We even made Dad's favorite boyhood cake, a "1-2-3-4 cake" with vanilla frosting.

Here's a picture of the festivities. Apparently no one else got the message that this was the "zany" picture:

On Saturday, Lauren and I went to Men's Wearhouse to select groom and groomsman outfits for our wedding this summer! The suit passed muster with Dad, who has quite a critical eye for menswear.

Sunday saw a bit of an increase in Dad's energy level. He spent a lot of the day chatting with Lauren and me, also reading three full newspapers(!).

Since the last blog post, we have been so grateful for the delicious food brought by many friends and neighbors: Debbie Edwards, Mary Lib Howell, Dana Ludwig and Irene Guy, Harriet Plyler, and Karen McKinney. It's very touching to see this great outpouring of support from so many corners. I've also got to ask Dad just how he came to know so many amazing chefs! This is WAY better than what we're used to out in California.

Sleepy Sunday

It's raining pollen here on Chapin Avenue, as the wind stirs in the trees. John is asleep and Ellen is working on a sewing project. She has been able to get back to some of the things she enjoys, including evening chorus practice the last two Tuesdays. It's been nice for her to get out a little as John seems stable and I'm able to keep him company after work. Chronic fatigue still persists, but John is strong enough to read which, luckily, is one of his favorite pass times. Thanks to Ellen Cheek for bringing dinner last night, it was delicious!

Postive Report

John's trip to Moffitt today for the MRI on his brain yielded positive news! Ellen writes:

His MRI, taken this morning, shows a marked diminishing of the tumors and their surrounding swellings, anywhere from 25% to 50% smaller. Of course, we all surmised something was going on the right direction, since he is markedly improved, brain-wise. It was wonderful to get concrete proof of this! His next big moment will be in mid-June when he has a CAT scan done to see how the meds are working against his kidney cancer. We feel so positive about all this!

So the extreme fatigue seems to be worth tolerating for these good results. He was strengthened for today's challenges by a beautiful smoked turkey dinner last night courtesy of Margo Harrod. Lovely seasoned mushroom rice, soft rolls, and sugar snap peas followed by key lime pie were all included in the feast. Thank you Margo!

This Week

Saturday night Norman Stallings and his lovely daughter delivered a Nags Head seafood feast complete with salad, baguette, dessert, and a lovely white wine. It was delicious and such a treat to have a gourmet dinner delivered.

This week we are looking forward to Thursday, another visit to Moffitt, and hopefully more light shed on John's circumstances. Life remains quiet at home.

Quiet Days

John managed a business conference call yesterday, and has spent much of the rest of his time since Wednesday resting, napping, and reading. He looks forward to getting more strength and energy back. It appears recuperating from radiation is a long, slow, process.

On the mend

John is a little more like himself the last 2 days, taking longer walks, even using his Blackberry which had been set aside, formerly his constant companion. Seems some strength is returning by inches and we are glad for it! Not ready for a marathon, but getting stong enough for a trip to Hawaii in July is the short term goal. Another week to wait for a scan to see how the radiation worked. Enjoyed a long computer-video visit with Soren and Anna tonight, Soren showing off his new walking skills and kissing the camera so all felt cyber hugged and kissed. Dinner from Alexandra Ellison was so much appreciated.

Update

Blessed with good weather John enjoys time on the porch and some reading and BBC programs between naps and short walks. He is enjoying the lovely meals friends have provided and notes and cards arriving in the mail. We didn't quite make the lunch out we hoped for as energy level didn't allow, maybe later. My spring break ends tomorrow so back to work for me. This Thursday will mark 14 days on Sutent and side effects should be apparent by then if there will be any, aside from fatigue which is ever present. Today is Soren's first birthday, so we all talked with Anna and wished him happy birthday. She had a small party with four friends and babies complete with cupcakes and balloons. John is a devoted granddad, so he loved hearing all about the birthday fun.

Mother of the Groom

Yesterday Ellen and I shopped for a dress for her to wear to Will and Lauren's wedding in July. We found it within ten minutes of walking in the first store, maybe five! It's perfect and now that's off her mind. John was impressed with our speed and decisiveness, but still glad he wasn't personally involved in our mission :)

Today John has been on a walk around the block with Ellen, spoken with people at his office, worked on some math puzzles and is now listening to a lecture on his ipod, all exhibiting more energy than yesterday. Hopefully he is regaining some strength.

Wedding Planning

Yesterday John took it easy and Ellen and I worked on plans and centerpieces for Will and Lauren's rehearsal dinner all day. We were so grateful when Jane and Patsy brought dinner we decided to add a food calendar to this blog for anyone who wants to help in this way. To use the calendar, you click the link (http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=23ecb60f-2ca2-4e98-b918-8aef2319272e ) and follow their directions to open an account and claim a day. The account set up is very simple, it takes less than a minute. Thank you to everyone for all your support!

Easter Sunday

Friday and Saturday were very good days, John seemed much more himself and we enjoyed visiting and relaxing. Ellen and I even went on some errands and John managed well on his own. This morning he was somewhat fatigued again and blood pressure was low, but this afternoon things are looking up again and we are planning lunch out one day this week if all goes well. John began taking Sutent (an inhibitor) on Friday evening. No side effects from this yet, and these are cumulative so it should be a couple of weeks before we see those, and if lucky, maybe there won't be any.

Spring Training

John and I attended a New York Yankees spring training game on Wednesday afternoon. All arrangements were handled with great care by our dear friend, Norman, and we couldn't have asked for more. From a close-in parking spot to seats on the end of a row in the shade, our baseball day was perfection. Hot dogs, peanuts, spectacular weather and the NY Yankees. Perfection!

Neurology Exam

John's neurological work up today went very well, the doctor found him sound. Second trip was to see Dr. Fishman and he wrote the script for Sutent, to be started tomorrow. Hopefully, little or no side effects will present. A nice afternoon here, walk around the block, visit with Anna on the phone, chat with the office also. A good day!

Biopsy results

John, Dee and Ellen met with Dr. Spiess at Moffitt this morning. The kidney biopsy confirmed the previous supposition that we are dealing with clear cell cancer. The next step, all agree, is to begin taking Sutent, an inhibitor drug, which is typically given in a four week regimin with two weeks off right afterwards. Most likely, John will begin taking this drug, which is given in pill form, once a day, on April 1. We have fingers crossed that he will tolerate the medicine well and side effects will be minimal. We've got appointments scheduled for late in April and also in May to discover the effectiveness of both the Sutent and the brain radiation. So, for now, he remains patient, fatigued from the after-effects of radiation and just trying to "ride it out" as his sister, Margaret, says. We are enjoying lots of PBS shows on netflix and Dee and I try to come up with new menu ideas to tempt him.

Quiet Days

Texas family left this morning so today was quiet and for the time being, life will be focused on resting and getting strength back. The delayed effects of radiation continue to cause extreme fatigue so days are spent relaxing and trying to be patient. That must be where the term comes from, for being this kind of patient is an exercise in patience. Next doctor's appointment will be Tuesday, for the biopsy results. Thank you everyone, for all your care and concern.

March 22, 2010

Thursday John spent much of the day at Moffitt while they took a biopsy of the tumor on his kidney. The results will be available in about a week. This was tiring, but he rallied for the next few days enjoying the end of his visit with Anna, Nathan, and Soren, and the beginning of Pam and Raylene's stay, arriving from Texas on Saturday to visit and help out. We've had two short outings to have lunch since all this began, but at this point the delayed effects from the radiation are becoming apparent, which as we were informed ahead of time, are indicated by extreme fatigue. So for this week it seems, rest and recuperation are what's required. No tests and treatments for the time being.

Tuesday Morning

John here. I am trying to enter the internet superhighway by adding to this blog. The energy and effort involved in creating this blog and sharing of information by all and sundry is SO appreciated. Maybe it's a sign, but, while Will was home from Mountain View, we saw a huge snowy white egret in our back yard. He landed gracefully and wandered around for a while. I understand that the appearance of such lovely bird is a portent of good luck. I welcome ANY encouraging sign, supernatural or otherwise! I feel much better, more like myself, as the drugs in my system dissapate. I am proud to say that there is definitive medical evidence now that I actually have a brain!!!

Monday, March 15, 2010

It was wonderful having Lauren and Will here. We actually had lunch out Sunday, which was a first since all this. Were able to eat outside by the water in the great weather and cool breezes. All the fresh air made for good napping afterwards. Will and Lauren are back in CA now, but we look forward to Anna, Nathan, and Soren’s arrival early Wednesday morning.

Today a morning visit to Moffitt and consult with Dr. Fishman shed more light on the situation. Dr. F. seems to believe that the course of treatment going forward will likely be a medication called Sutent taken in pill form which would allow some travel and flexibility as long as John feels well and reacts well to the treatment. The biopsy of the kidney tumor on Thursday will yield more information, but should all go well, trips this summer including Will and Lauren's wedding in Hawaii now seem a real possibility.

Dr. Fishman had good news on the results of the bone scan, which came back clear!

March 12, 2010

Great day yesterday and today.  Yesterday John finished up his last radiation treatment (hooray!), and today he went in for a checkup with his usual medical doctor.

Other than that we've been enjoying the lazy days -- walking to Bayshore, listening to the thunder, and talking and talking. I have to say, after my experience these last couple of days, that John Robinson knows more about everything than any other person I know.  We talked about:

• The Marie Celeste
• Civil War causes, generals, strategies; greatest leaders and why
• Roman Polanski, movies and life and legal status
• Harper Lee, Truman Capote, and trial lawyers as depicted by TKAM
• First year of law school
• Frisky and Peaches
• Chapin street architecture and landscaping
• New Orleans - city structure, politics, history of founding
• Los Angeles - city structure, politics, history of founding
• Baseball in America (and Hank Aaron)
• "The Map That Changed the World"
• John McPhee and John David Love, Wyoming
• Shelby Foot
• Hawaii topography
• Bishop Estate and Kamehameha Schools
• Perceptions of Randomness and its applications to risk
• Education policy and NCLB
• Tom Wolf
• A neighbor that talked a lot about a friend named "Billy" that John figured out was William Faulkner
• Slide rules
• Using differentials to calculate how to lay out roads
• Clint Eastwood
• Chain gangs
• Reasons for implementing an insurance program for military personnel

... and etc, etc.  My reading load has tripled and my knowledge has increased at about five times its usual rate.  It's been really cool.

March 10, 2010

Only one more day of radiation treatment to go, and Dad is holding up like a champ.  Dad and I spent most of the afternoon at the Moffit Cancer Center, where they performed a full-body bone scan just to see if there were problems hiding in any other places.

All this week, Dad has been mostly energetic, alert, and pain-free.  With no work, reading, or blackberry to consume his attention, all of his energies go toward conversation with folks around the house.  I really believe that he's one of the world's great conversationalists, and we're all struggling just to keep up!  I picked the right year to subscribe to The Economist; otherwise there'd be no one around to nod at his musings on Greece's debt crisis, Chinese gender imbalance, the genius of General Petraeus, etc. etc. etc.

On a light, last note, we also visited Lynn at our trusty hair salon for an extreme makeover on Tuesday night, and Dad remarked that he hasn't been so aerodynamic since his first day of Army boot-camp.

March 6, 2010

John and Ellen consulted with the doctors at Moffitt on Friday and have decided to move over to Moffitt and work with doctors Spiess and Fishman who have good reputations and expertise in renal cancer. They plan to continue current therapy, add some more testing and postpone surgery while they see how their drug treatment works on the kidney tumor. Betty and Margaret left this morning, their visit was wonderful therapy. Will arrives on Monday, and we all look forward to that!

March 3, 2010

So nice to have John's mother Betty and sister Margaret here from Atlanta. They arrived Monday and have been providing wonderful Southern cooking and comfort since. John seems to be much better the last two days, and very much enjoying his family visit.

March 1, 2010

The weekend was filled with a good visit from John's brother Lee and his wife Betsy. Betsy prepared lovely meals for everyone and we all enjoyed seeing the Atlanta family and having a break from the radiation routine.
Anna and Soren flew home to CA very early this morning, John's mother and sister Margaret will arrive this evening from Atlanta. It's wonderful to see everyone and be surrounded and supported by family. John continues radiation today, which is causing increasing fatigue, but he stays in good spirits, an A+ patient.

Radiation - Day 4

...and only two more days this week before a weekend filled with rest and family! Dad's a champion, and continues to rise to the challenge each day. More walking, napping, snacking, and chilling on everyone's part. A rainy day - Dad and Mom had a nice time enjoying all the drama from the front porch, sharing in Soren's wonder at the weather. Ice skating and ice cream tonight!

Radiation - Day 3

Another happy and uneventful day! Mom took Dad in for treatment in the morning and all went well. We had coffee and breakfast, enjoying some TV - we've been trying to keep up with the Winter Olympics in our spare moments. Dad is feeling up to some walking, which the doctor has given him the thumbs up for - so we all took a nice 30 minute stroll around the neighborhood. Dad spent a lot of the time pointing out the squirrels and birds to Soren while we all talked about the amazing oaks in our neighborhood. Good news is that Dad's feeling up to "crackberrying" and has been back on his blackberry keeping up with everyone. Soren's got a bit of a cold, and that's about as much drama as we're dealing with around here! Naps for all, and Yacht Club takeout tonight with Dee. Pam comes in a few days, followed closely by Lee and Betsy. And this wild party continues...

Radiation - Day 2

Mom took Dad in for his second round of radiation this morning, and all went well. It's a painless procedure that is similar to a lengthy xray - just a bright light shone onto his head. He's placed in a firm mesh mask that has been made specifically for him so that he won't move at all, and just lays back while they do the radiation. So far Dad's feeling great - no pain, only mild fatigue. He has 13 more days of radiation, and then he gets to rest and recover. The results are sometimes a bit delayed, so all he can do for now is relax and enjoy his down time! A trip to Target for new Soren clothes is on the agenda today, as well as some Yacht Club take out. Lots of napping and resting for all, as love and support continues to flow into this house. Thanks everyone for all of your support, we can really feel it!

Lazy Sunday Morning

All is well this morning, as Dad enjoys his first full day of rest. No hospitals, no treatments, just a nice long sleep in with Mom, followed by some cheese grits on the porch with his grandson. Our big plans for the day include a walk and perhaps a trip to the park. Dad's feeling great, reading the paper, tending to the fire, and getting some well deserved rest. Will, Lauren and Nathan all flew home this morning to get back to work, and I'm staying here with Soren for at least another week or so, just to hang with everyone. It's glorious this time of year - sparkling blue, cool and crisp - inspiring weather. Looks like both of the boys have settled in for a late morning nap, and Mom and I may follow suit. Delightful!

Dad returned home today!

Dad came home this morning, greeted with cheerful hellos from all of us.  He'll be getting his treatment over the next three weeks as an outpatient.  He's in great spirits and is so thankful for all the people who have called, emailed, mailed, and sent carrier pigeons to wish everyone well.

John at home

John was released from the ICU this morning and got home around 11:30, what a huge relief. He was happy to have lunch at home, feels pretty good and is taking it easy. Radiation treatments continue on Monday. Grandson is great therapy.

Radiation Treatments Started Today

Dad received his first treatment of whole-brain radiation today.  He reports that (as expected), the treatment itself didn't feel like anything.  Most notable part was being fit for the custom face-mask they'll use to keep his head in exactly the same position and orientation over the next 3 weeks of continued whole-brain radiation treatments.

Dad is in good spirits, and we're hopeful that he'll get to come home soon and just commute to the hospital for the rest of the treatments.

If all goes well with the radiation, then they'll be removing his kidney a few weeks after finishing the radiation treatments.

John's Treatment Plan as of February 16, 2010

After four days of testing and many medical opinions, a plan is forming to treat John. The first priority will be to treat his brain with targeted radiation working towards shrinking the trouble spots, and impeding further growth there. This can be done as an outpatient, so we are hopeful he can be released from St. Joe's soon. To backtrack, he was admitted there through the Emergency Room very late Monday night after suffering some confusion and realizing there must be something wrong with his thinking. The upside is, there are no headaches or other pain, and he is perfectly able to converse, and appears nearly normal, with some minor exceptions in his thought processes. After the radiation treatment, there is a kidney tumor to be dealt with, and the exact procedures for this are still under development. There may be some surgery, there may be some chemotherapy.

Our family is so grateful for the outpouring of sympathy, support, and offers to help. This came out of the blue for us all, so we are still trying to process it and adjust. The California contingent all flew in right away, so John has his whole immediate family around him right now, which is a huge help and support.

John didn't want this to be all about him, so he suggested we post some video of his beautiful, exceptional, and brilliant grandson, Soren.

Soren is working hard at home while Dad works hard in the hospital

Soren's appetite for Uncle Chuck's sauce shows that he's a Robinson through and through...

Dad and family celebrating in Mountain View last weekend

A couple of videos to start with: