Just when you expect to slow down ...
3 August, Minneapolis MN USA
Yesterday Sabrina and I took Christopher, who will be 5 soon, to a new playground by Lake Harriet. To refresh your memory, Sabrina and I were in the same Peace Corps group, and her son is my adopted youngest grandson. We had a lovely picnic, chatted forever and watch Christopher cavort on a newfangled jungle gym built in a sand pit. He climbed a contraption that was a series of thick ropes riveted together, up and down several times, with me holding my breath for each one. Although a sand pit was at the base, I could just imagine him falling. But he didn’t. He’s an agile kid. Sometimes he’s also a shy kid, but he made friends with another boy and his young mom with whom Sabrina also made a connection for future play dates. All in all, despite the continuing excruciating hot weather, a good time was had by all. And Babcia Suzi once again forgot to take photos!
Tonight I’m joining Julie and Yvette, friends and former clients from my Northeast Economic Development days, plus Kathy and Susan, two friends of theirs who have been great to include me in their Girls’ Night Outs. We’ll stay in, enjoy take out Middle Eastern food at Susan’s, and wish her well as she prepares to move to the suburbs. I had suggested we all wear black to mourn our loss. I promised that once I’m in my condo and settled, I’ll do a Girls’ Night In at my place. It’s been fun to widen my sphere of friends.
6 August, Washington, DC, USA
Here I am at David and Inga’s new house in Bethesda, just a few miles from where they lived in northwest DC when they were here before. Last time I saw them was in Krakow in May as they organized for the move. Now I’m here to help with the house, the girls (Frankie and Tosia) and wherever necessary while David and Inga deal with his cancer. Yes, you read that right. David had a malignant tumor removed from his brain a week ago. A smaller tumor was left to be treated with chemo and radiation. They were diagnosed at the end of July. David had been found unconscious in the garage at his office, thought to be a mugging victim until an MRI was done. I didn’t write anything in the July blog because I didn’t know what to say. Not only was I overwhelmed, but we had little information until the surgery was completed. But now I’ve seen David, have heard what the doctors have to say and know what’s happening.
|David after surgery|
David’s brother Mike picked me up at the airport yesterday, and we went straight to the hospital for which I was grateful. I was afraid David might be too tired for another visitor. But he walked easily to the visitors’ area where Mike, his wife Jan, Inga and I were stationed. Jan has done a wonderful job of keeping things organized, complete with calendar of important dates (from new student orientation for the girls to oncology appointments) and a “to do” list for each of us.
David looks terrific, as you can see in the photo. With a baseball cap on his head, his shaved spot and stitches aren’t visible. His humor is in tact and his spirits are high. The rehab case manager came by while we were all talking. She’d met everyone but me, and said, “So you must be David’s mother.” We all got a good laugh. Reminded a little of a time decades ago when a student nurse thought my mom was my dad’s mother because of her gray hair in contrast to his coal black. Only this time I actually am old enough ... just would’ve been a very young mother.
Last night David moved from Georgetown University Hospital, where he had the surgery, to a rehab hospital on the other side of the District. Today they did tests before a treatment plan is developed, then he’ll have rehab for seven to 10 days. He’s also having a post-op MRI that will be part of the diagnostics for a second opinion. The resourceful and tenacious Jan found the top brain cancer doc in the US at Duke University and has been in touch with him about David’s condition. So that’s a possibility for follow up treatment including a trial.
I’ll be here until 16 August, then back to Minneapolis for me and on to Kansas for Frankie and Tosia. They’ll spend a few days with their dad’s other brother, Jeff, and his girlfriend; they left before I arrived. Not the tour of the Grand Canyon and surrounding sites that had been planned, but at least a bit of a break before school starts later in the month.
Spent almost an hour of the phone with Dish network today trying to get the “hopper” and the “joey” to work right in David and Inga’s bedroom. It’s some newfangled mechanism that allows a Dish client to have access to the satellite in more than one place AND to watch different things on those TVs. Unfortunately the master bedroom TV hadn’t arrived when the Dish technician set up the main TV and “hopper” in the family room. A family friend tried to set up the second TV and missed something, I’m not sure what, so it wasn’t working. After all the trial and error checking on the phone, the online tech finally agreed to sent the first available tech here on Sunday afternoon, or sooner if there’s a cancellation.
Actually I spent a lot of phone time today. I had promised to contact doctors used previously to be sure they took the current health insurance plan and in some cases, to make appointments. At one office a real person actually answered the phone. Amazing, as everywhere else I was first faced with the “if you ... press ...” litany that I have grown to abhor. But eventually all was done.
News is that David will come home tomorrow from the rehab hospital. Inga said when the rehab hospital attendants arrived to pick up David on Monday evening, they brought a litter on wheels. They were flabbergasted that David, standing on his own, identified himself as the patient. He looked way too able and healthy than what they were used to. Since he wasn’t allowed to leave under his own steam, even though he was capable, they got a wheelchair and off they went.
David got home just after lunch. Inga and Tomek, a Polish friend, went to pick him up while the girls and I went shopping. And of course I got us lost. Thankfully DC has roundabouts like Scotland!
I have a renewed appreciation for my friends with children and full time jobs and houses to keep up. I’m only helping with the cooking, housework and such plus the girls are pretty self service, and I’m pooped by bedtime.
|Frankie made blueberry muffins from my friend Jean's mother's recipe.|
Tomorrow I return to Minneapolis for a week, time to have my own annual check ups, move back into my condo and start organizing it again. I’ll come back here on 23rd for a couple of weeks to help while the girls start school and David starts treatment.
David and Inga are exhausted after a full day of seeing doctors for follow ups. All seems to be going well, and David looks and feels good. He’s riding his stationery bike regularly, something he’s done for decades, and his cognition seems to improve steadily. The girls are being themselves, arguing too much but good kids. I’ve given them a limit - each can initiate only two fights. Helps a little with the continuous sisterly bickering. We’ve gone to the Montgomery County pool a few times. I do some of my water exercises though I admit it’s more playing than exercising. Where is Andrew when I need him? Oh, right, back at Blaisdell Y in Minneapolis cracking the whip at water boot camp. I’ve been encouraging Tosia to consider swimming as her sport. She is like a fish, always on the move doing front and back somersaults and swimming underwater. They got registered for school yesterday and weren’t required to take the English test ... but they did need a Mantoux (TB) test. Inga is super organized with folders for each girls subdivided by various doctors, schools etc. plus all of David’s info. She’s getting better at letting others do things for her.
|Tosia loves the pool|
17 August, Minneapolis MN
Happy birthday to my sister, Barbara, who’s celebrating with friends in New York City this weekend.
And oh my aching back. After my 7:15 am ‘pilates in the pool’ class, I spent the morning helping my nephew Chris move his things to Barbara’s and things I had left at Barbara’s back to my condo. Then in the afternoon, I did lots of laundry and cleaned things no one will ever notice -- the refrigerator, the floor behind the washer and dryer ... and around the furnace and hot water heater, under the sink, inside drawers and cupboards. I threw out food that had been in the cupboard, ‘frig and freezer since I left last October. But I still haven’t put my clothes away. Had to leave something for tomorrow.
Happy birthday to my youngest niece, Tomery, who’ll celebrate in Vegas next weekend.
If the housekeeping doesn’t kill me, the water exercise will! Andrew’s Water Power Ex this morning was a killer ... and his Wednesday Boot Camp will be my final water ex this week. Thank heavens I got an upgrade on my Thursday flight to DC.
Today a friend and I went to two movies -- “Beasts of the Southern Wild,” a very odd film that won at Sundance and it’s easy to see why. No professional actors but incredible acting. It’s about a group of people in the lowlands of the delta during Katrina. The cinematography was awesome. To lighten things we stayed for “Ruby Sparks,” a romantic comedy but another odd film. Includes a hallucination that may or may not have been one, and if it wasn’t, might’ve been like the year of “Dallas” that was all a bad dream. It was a good movie and a perfect antidote to the serious “Beasts” themes.
What a fantastic evening! We celebrated Barbara’s and Tomery’s birthdays at their favorite restaurant, the 112 Eatery in downtown. We includes, besides the birthday women, my niece Michelle, nephews Christopher and Craig, and Craig’s girlfriend April. Chris’ girlfriend Jen and Michelle’s husband Jon weren’t able to be with us. Although I gave Barbara a hard time for eating what she always does -- lamb skewers for an appetizer and burger with brie for dinner -- I did the same thing. The three lamb skewers are enough for a meal, so that was my dinner, preceded by a salad of crisp romaine leaves with crumbled blue cheese and a very light touch of vinaigrette dressing and something small and crunchy (a few crumbled croutons, perhaps).
Craig came down from Brainerd for a few days and spent all morning with me. He fixed a bi-fold door in my laundry room, which has earned him eternal gratitude. I could not get it to stay on the track, nor could anyone else. Craig figured out that we needed to raise the bottom plate a little, which he did, and shazam! It works. We had lunch at a Mexican fast food place, Baja Sol, that neither of us had tried before, and decided it was a place to visit again. Tasty fresh food at a good price. Then I went off to continue the process that brought me back to MN -- annual doctor’s appointments and an appointment with Connie, my hair dresser who covered my exposed white roots. (No comments, please!)
|Some of the Blaisdell Y water ex crew|
23 August, Washington, DC
Flying first class was a lovely treat today, especially after Andrew’s Boot Camp class at the Y yesterday. And so was having Craig drive me to the airport. But having my one checked suitcase be forgotten in Minneapolis was not. I have to add, the Delta people were great, and the suitcase was delivered to David and Inga’s house a few minutes ago.
Finally figured out tonight why my laptop cord hasn’t been working consistently. There’s a little green or yellow light that indicates full battery or not. And several times when in my condo, I went to use the laptop and noticed the light was off. I checked the outlet, extension cord, changed from two-prong to three-prong plug, and nothing seemed to work consistently. Sometimes the connection would be made and recharging would begin, other times not. Ditto here when I plugged in. So I inspected my cord ... and there they were -- Lily teeth marks. Chris had told me that Lily, my/his cat, had chewed completely through several of his cords to the computer, iPhone etc. He bought plastic tubing to cover the cords and left me one to use. But I hadn’t seen any evidence that she’d done tried to chew on my laptop cord ... until I looked very carefully tonight ... and found one bite mark. Undoubtedly that got all the way through to the wires and how the cord is sitting affects connectivity. Add to my “to do” list -- Apple store for a new cord for the laptop. But at least the mystery is solved -- I am not going crazy, the condo does not have a ghost.
Hectic day trying to get a doctor’s order for a blood test that David needs so he can be evaluated for a possible treatment trial at Johns Hopkins. Because the test results are needed very quickly (read: can’t wait days, weeks for insurance company approval), David is paying for the test out of pocket. Inga cannot understand why, given that, we cannot just go to a lab and get the test done. That’s how it would be done in Poland ... different health care “system,” different rules. Besides getting the doctor’s order, we had to find a lab that could do the test stat (ASAP) and get results by Monday. David’s regular doctor agreed to write the order once he got all the info he needed. And David and Inga ended up at JHU which has a lab that can do the test and an outpatient clinic with an Express Testing option, allows walk ins and takes credit cards and checks. By midday, David and Inga were off to Baltimore.
I have to say that I have never seen such excellence in customer service outside the Mayo Clinic. As many of you know, Peter was initially treated at Mayo and beginning with our first visit, the Mayo staff set an exceptionally high standard that was rarely met at the other places we had to go. JHU’s staff met that standard: Everyone from receptionist to med technical was the most helpful, courteous individual in health care that I’ve dealt with in a long time (and as you read earlier, I’m in the midst of my own annual doctor visits, so have recent personal experience). One fellow even called me to give me an alternate person’s name in case I needed something after he went off duty, and he briefed the other guy on what was going on! And the nurse in the office of the doctor heading up the trial seems genuinely happy to hear from any of what he calls “David’s Army” at any time. One member of the army from David’s office delivered a delicious home-cooked dinner, complete with fresh strawberries, chocolate chip cookies and a funny card for David.
Mission accomplished. David got to JHU, had the test and results are to be available on Monday. He and Inga returned tired but feeling good that the test was underway. Later I caught up with emails while Inga took Frankie and a friend shopping, Tosia was with a friend at her house, and David trimmed long branches from a tree in the back yard. Then David and I waited for the rest of the family to return. We sat their large back deck, enjoyed the lush green backyard view and talked on myriad topics while David anticipated his nightly cigar and I sipped my evening glass of wine. Great day.
The day before school starts for Franciszka and Antonia, the names they now prefer. So yesterday we broke into two groups and went shopping. Frankie and I managed to find our way to Target using Inga’s directions and a map on my phone. Target was its usual pre-school madhouse, but we found most of what we were looking for. And amazingly the check out lines weren’t long. Then it was off to meet Tosia and Inga at DSW Shoe Warehouse in another area; David had returned home after those three had a sushi lunch. The phone map was accurate, its reading was slightly less so. First we were in the wrong lane, then made a wrong turn, all at the very last intersection. To top it all, the store was easily visible from the street. The two-story DSW had to be 10 times larger than the one in St. Louis Park where I shop. I helped Inga decide on a gorgeous and very unusually made paid of leather winter boots, then Tosia and I left for home. After a couple of wrong turns, despite the phone map, we made it.
David and Inga are in Baltimore where David is undergoing still more tests, being outfitted with his own special radiation therapy helmut and waiting for the results of Friday’s blood test. In the meantime, his brother Mike and I are cobbling together a caringbridge.com page to make it easier to keep everyone up to date. I’m going to add some pix to that when I’m done here.
This morning I drove to Derwood MD to have the emissions on David’s BMW tested. Thanks to Gertie Garmin I only got lost once ... and it was her fault. She neglected to tell me that my next turn was immediately after I exited the freeway so I missed it. “Recalculating.” Don’t think I got a “bong” with that one. I have noticed that cars have enhanced idiot lights (remember those? they glowed red on the dashboard when something, who knew what, was wrong) with sounds. Now I get a “bong” sound that still doesn’t tell me anything. I say “bong” because it sounds too rounded to call “ping” and it’s definitely not a “beep.” On Sunday when Frankie and I got back in the car after shoe shopping, the car bonged ... when I backed from the parking place, it bonged, and when I stopped to pay the parking fee, it bonged ... that’s when I realized the trunk was open as the idiot light showed. I begged the attendant’s indulgence, jumped out, shrugged at the driver behind us and slammed the trunk closed.
Okay, I’m weirded out. Something in the kitchen just chirped a little tune at me ...
By the way, did anyone know that Rockville MD has a “historic district”? And if you did, can you tell me what’s there please? I saw several signs leading to the freeway exit for the Rockville Historic District. I grew up in Pennsylvania, so I know a lot of early American history happened in all of the “Middle Atlantic States.” A high school friend had a Whiskey Rebellion cemetery next to her backyard. And I’ve been to many historic battlefields and colonial towns. But somehow Rockville MD doesn’t ring a bell ... or sound a bong. Perhaps one of these days I’ll drive up there and see what it’s all about.
Okay, first for the weird chirping. It was someone else’s mobile phone announcing a text message; the phone was buried under a paper.
We had a really busy day with lots of ups and downs. David’s test results came in, and he doesn’t qualify for the trial that everyone had hoped he would. That said, two others may be possible but require more investigation in a very short timeframe. So we’re off and running again.
Got the great news today that my friend Lauri’s lumpectomy surgery had been completed and went very well. What a relief. Afterwards, she emailed family and friends that she was already up and eating tacos. That’s a true Texas lady!
What a lovely way to end the month ... with more good news. David will take part in a study of a new drug (BSI-201) for treatment of his cancer in a trial at Johns Hopkins. It’s a Phase II trial, which means it’s shown some good progress for patients and is done in conjunction with the standard of care, chemo and radiation.
The JHU staff continue to amaze me with their patient focus, words so often used in our health care system but so often not seen in action. As I noted before, late afternoon on Wednesday we got the news that David could not take part in the initial trial that was being considered. I alerted David’s Army and tasks were assigned. David’s sister in law would call another medical center about a new trial that JHU isn’t part of yet, and I would pursue trials at JHU. His oldest brother would check with docs at his facility, middle brother would work on caringbridge site. I called the nurse who coordinates that study and left messages on both her phones, I talked to Joe, the nurse coordinator of the original study to get his suggestions; emailed Lindsay, the due-any-day-now pregnant oncology radiologist’s assistant, to get hers; and updated the Army via email and phone. At about 6:30 pm, Silvia, the BSI trial nurse coordinator, called me from home on her son’s mobile (hers, she said, was not working). She’d heard from Lindsay as well as Joe and was calling from home. We chatted for some time about David’s status and treatment schedule. I noted that we needed to “cancel” the insurer’s approval of the original trial so approval for a new one could be requested. While we were talking, she emailed Joe to handled that. And today, not long after she called to tell us that David could take part in that trial, she called to say the insurer had approved. She had requested the application be submitted by JHU right after we talked on Wednesday evening! And she already has made tentative appointments for next Wednesday when she’ll meet David, and he’ll have some blood work done and get “chemo training.” He starts treatment a week from Labor Day.
Brother Mike, his wife Jan and one son Brian arrived this morning and Brian’s twin Chris arrives tomorrow. Kim, our Peace Corps/Poland friend, had arrived last night. Jan, Inga and the girls leave tomorrow for NYC for the long weekend, and the “boys” will stay with David for a weekend, no doubt, of cigars as well as a Nats’ ball game. I’m off to Alexandria for the weekend. I’ll stay with my friend Regina and her sons; we’re having a potluck picnic/brunch on Sunday.
For continuing news about David, please refer to www.caringbridge.com/visit/davidreene You need to set up your own user name and password, if you don’t already have one for this site. To find David’s page, you input his name as davidreene. The Journal will include updates from David’s Army, mainly his two brothers. You can leave messages for hi by signing the Guest Book, and we’ll be sure he gets them. If you want to be alerted when the Journal is updated, there’s a link in the Journal section.
I’ll be here until the 6th of September, then I’m back to MN for a few days. I leave on 9 Sept. on an Alaska cruise that I’ve been dreaming about since that scorching day in South Sudan when I got an email from my friend Marilyn asking if I wanted to do this. That was a no brainer!
And finally, this was part of a blog by Dan, a friend I acquired through my late son Peter. It seemed like a great way to end this month.