Tuesday, December 31, 2013
Wednesday, November 20, 2013
Monday, November 11, 2013
I first met Lari Grubbs at the Centennial celebration forLandsdowne Christian Church. I did what I usually do meeting someone in the region, stuck out my hand and said “Hi I’m Dana Miller from Christian Temple”. I saw him again a few weeks or months later at another function and did the same thing “hi I’m Dana Miller from Christian Temple”. He smiled with that twinkle he has and said “I know who you are”.
Lari Grubbs knew who I was.
A few years later I applied and interviewed for the position of manager at the Christian Church Conference Center. The most experience I had was with the church. Lari warned me my learning curve would be steep, that he was there for me day or night, I believed him and offered me the position.
Lari Grubbs knew who I was and what I could do.
My experience working with Lari has been easy. My husband likes to use the phrase User Friendly in the military. This has definitely been my experience. I knew several things working with Lari. I knew he was available. He once told me he could answer the phone in the middle of the night, attend to the matter and fall back asleep. I knew he trusted me. His confidence in my ability to care for the Conference Center and the people of the region gave me a greater desire to serve and do good things. I knew that communication was key and we had an open line. And I knew he had my back. I always felt like I worked with Lari rather than for him. I always called him my boss but Lari was more my guide. My questions, problems, comments were met with a question in return in order to form a thoughtful solution. And a joke was always thrown in to lighten the situation.
At the celebration for Campbell Hall, Lari publicly recognized me and appreciated me. He asked me later if I felt appreciated. What I didn’t tell him that day was that I always felt appreciated by him. At the end of every conversation we ever had, Lari would ask me two questions. He would ask me “Do you know I appreciate you? Do you know I love you?”
Lari Grubbs knew who I was, knew what I could do, loved and appreciated me.
This season was a challenge. Personally, I was not in a good place, balancing the care of my husband, care of myself, and the care of the conference center. In June, Lari arrived as usual for YAC. Upon seeing him, I began to talk incessantly about everything going on at the center. He just stood there, let me ramble forever and when I finally exhausted myself, he opened his arms, held me in his embrace, and said “there, there, I’m here, it’s ok”. Like a parent to a child. And that was exactly what I needed.
Lari Grubbs knew who I was, knew what I could do, loved and appreciated me and knew exactly what I needed
Lari Grubbs has been my boss, my minister and will continue to be my friend. So Lari Grubbs, I ask you two questions. Do you know that I appreciate you? Do you know I love you?
Wednesday, September 25, 2013
Friday, September 13, 2013
Wednesday, September 04, 2013
Tuesday, August 27, 2013
Wednesday, August 21, 2013
Saturday, August 17, 2013
Wednesday, August 14, 2013
Tuesday, August 13, 2013
Sunday, August 11, 2013
Saturday, August 10, 2013
Tuesday, August 06, 2013
Monday, August 05, 2013
Monday, July 29, 2013
Thursday, July 25, 2013
Monday, July 22, 2013
Saturday, July 20, 2013
Wednesday, July 17, 2013
Monday, July 15, 2013
Wednesday, July 10, 2013
Sunday, June 23, 2013
Friday, June 07, 2013
Thursday, May 30, 2013
Saturday, May 25, 2013
Thursday, May 23, 2013
Wednesday, May 22, 2013
Tuesday, May 21, 2013
Sunday, May 19, 2013
Friday, May 17, 2013
Thursday, May 16, 2013
Wednesday, May 15, 2013
Tuesday, May 14, 2013
Monday, May 13, 2013
Friday, May 10, 2013
Monday, May 06, 2013
After our initial bitch and blame session, we jumped right in to having a good time. We had reservations at Birroteca, a place we had been thinking of for a long time. A huge beer list, wonderful pizzas, and time with our gang couldn't have started the weekend better. Friday morning, Emma and I took two walks, one power and one to Whole Foods for a little shopping for our gathering later in the evening at Wenck the Farm. Good food, nice wine, and laughter in abundance at my Sissies. My heart was so full I held back tears.Saturday was the Maryland Sheep and Wool festival, the place where I bought my first knitting needles. Audrey went with us and we met up with our friend and short term housemate, Becky, who when we first met refused to hug and now gives the best, heartfelt, real hugs. I felt loved. I was unsure of whether I would have a car full of yarn or be so overwhelmed that I bought nothing. Well, I was on the side of overwhelmed. What I enjoyed were the hand knit garments I recognized, including seeing half a dozen color affection shawls a project that is currently on my needles, Next time my strategy includes a chair and knitting and notebook and my friend Randee. We ended the day with dinner and a movie with our gang again. We can't have too much time with them lately. On Sunday, drinking our coffee, we held the debate of whether to go to church or not and whether to go to Lansdowne (Dad's church) or Christian Temple (our previous home church). By the time we developed enough energy or drank enough coffee to make a decision it was too late to get to the former in time so we decided on the latter. Good decision. We walked into Christian Temple and received the most unbelievable welcome. The NG Church Band was doing the service. They were great! It was so different for MHP not to be part of the band but so great to just listen, hum, and move with the music. He was honored as one of the original members.We ended our time in Westminster with the Miller's at a crab feast honoring Bill and Suzan's Australian guests. We gathered again with family, the beginning and end of our time in Baltimore. Yes, the weekend was Allright! And I am exhausted. We are home now awaiting news.
Friday, May 03, 2013
We made numerous phone calls, texts, emails to all involved. One wise man told me that maybe it was just what Pat needed, more time to heal physically and spiritually. Shit happens and the healing way to deal is to find the positive, not always easy, especially when you just want to blame and bitch. But we are doing just that. Last night we had a great evening with our daughters and their manses. Today I will walk the hills of Mt. Washington and visit the arboretum on this lovely spring day. We will head to Wenck the Farm, Sissie's place for a bonfire. I can not hardly contain my excitement at being able to attend The Maryland Sheep and Wool Fest, church at Christian Temple and lastly a crab feast at The Millers. Family and fun time not centered around a holiday or treatment or illness. And hopefully when we get home there will be one more opportunity to have some fun with Mom, Auntie and dear friend, Kae.
Wednesday, May 01, 2013
Tuesday, April 30, 2013
Today is another rainy day. It's not quite so perfect but productive. I am at work doing a little bit of everything, acccounting, waiting for a group, placing orders, burning my lunch and having the fire company dispatched. I followed protocol, unplugging the toaster, reseting the fire panel, calling the security company but it was too late. The worst part? They are one block away and had no idea where the center was located. OMB! I had to go out onto the street and flag them down. A little worrisome.
My Handsome Prince is scheduled for surgery on Friday. We will head to Baltimore early Thursday morning for the last little bit of pre-op tests and a consulatation with the plastic surgeon which got overlooked last week. We will go out to dinner with our girls and future son in law, hold hands, say a prayer, laugh, whatever we need to do together to ease our hearts and minds for the next day. Friday will begin very early arriving at the hospital by 5am. They are proposing a very difficult, big surgery. Originally when the surgeon said excise the sarcoma, we thought exactly that, just the muscle area where the cancer is. No. They hope to be able to replace from hip to knee, taking out the original prosthesis, the radical extension put in two years ago, his hip, and then excise the dead sarcoma from the muscle. Since they are doing so much work, Pat has asked that they work on his patella, installing a button under it to prevent it from rubbing on the prosthesis which has caused him pain for years. All of this information was part of what shocked us last week. I asked his long term orthopedic oncologist if Pat would be able to walk his daughter down the aisle in a year. He smiled and said "I like that,Yes. " There are risks involved but the greater risk is doing nothing at all. We anticipate a hospital stay of at least a week and maybe a few extra days in Baltimore just in case.
Friday, April 26, 2013
Wednesday, April 24, 2013
I felt like I needed to make a quick run home to attend to some things at home and work and pack a bag. So I left.
I hate leaving him.
I managed to get everything done and hit the road by my goal time. I was back in Baltimore, back at Hopkins by 3:30 wednesday. Audrey was there shortly after me. Pat is feeling fine other than being in a hospital when there are better things to do like even mowing the lawn (thanks Bill and Patti!). He is scheduled to have an IVC filter put in today, which filters any clots from his legs and prevents them from traveling to his heart. The hematology crew said his body will take care of the clots in his lung and they have put him on anticoagulants. He will have to be taken off the anticoagulants about 24 hours before surgery but that's another post.
It was a beautiful evening. I took a beer out onto Marie's deck and listened to the sounds of the city, animals, kids, neighbors and an occasional bus. It was good. I spent an hour catching up with Marie. It was good. And now I will go I to the hospital and knit and wait. I hope we will go home today.
Sunday, April 14, 2013
Pat has been home for a little over a week. His radiation burn is looking good. We went to DFH on Thursday night, I've gone back to work, he has gone to work, we went to church, we've been attending to yard and housework. Normal, sweet normal. He fatigues so easily but it's remedied by a nap or two or three.
Tomorrow we head to The Tunnel Cancer Center for a follow up appointment from his hospital stay at Bebe but also to have the local contact for the next round of things. His primary care and treatment will still be at Hopkins but to have a local doctor for bloodwork, problems, whatever, will help.
In the meantime, I have an incredible nesting urge.
Thursday, April 04, 2013
A plumber who hugs (and saves my sorry ass)
Sing a long with Jackson Browne
The view from the Indian River Bridge
And the best for last, taking My Handsome Prince home from the hospital.
Here's to Thursdays and normal.
Monday, April 01, 2013
We are finding our way, finding our way through a massive hospital, finding our way through the red tape of insurance crap, finding our way back and forth, work and not working, but mostly finding our way through this illness, finding our own way to handle the pain, the fear, the unknown. I, personally, walk the line between many emotions, sadness, helplessness, bitterness and hope. Hope wins out most of the time.
It's been a rough weekend. Pat has been experiencing some radiation recall brought out by the chemotherapy. He is in pain. Then today, which is six days after chemotherapy ended, he developed a fever. His oncologist recommended a visit to the local ED (rather than the drive to Hopkins)and be admitted if necessary. She made the phone calls and gave specific instructions to the locals, what to do and what NOT to do. By the time I left, he still did not have a room as a private room requires a bit of maneuvering patients around. He had been made more comfortable, given antibiotics and pain relief. I think last nights drive home was longer than the drive to Baltimore, though closer. I left him in an unfamiliar hospital with staff unfamiliar with his illness and treatment BUT I hung on (and still do) to that glimmer of hope because the staff listened, they accommodated, his oncologist and radiologist are always there for communication, for us and for this local staff, and because I have to.
With all I have to do today, digging my feet into the sand and watching and listening to the ocean, to that great, vast, ever moving body of water is a priority.
Wednesday, March 27, 2013
That has nothing to do with My Handsome Prince's health update.
He was admitted on Friday for this last round of chemotherapy before surgery. He was attended to by some familiar staff and some not familiar but all kind, caring, and for the most part attentive. He had several visitors including both his sisters and their manses, an old friend from Manchester, Audrey (Emma was sick all weekend :-( ), and of course his Dad and Suzan who make the trip weekly. Our friend Rick came by before he was admitted and we talked music, family and church and when he left we gathered in a circle for a word of prayer. It was a good weekend or as good a weekend on chemotherapy can be. He tolerated treatment with no issues, heard the latest with family and friends, listened to Car Talk and watched The Walking Dead.
We are home now. In our own home. For a couple weeks (say your prayers, keep your fingers crossed, breathe, meditate whatever you do to send intentions that nothing goes awry). We have two small freezers full of absolutely delicious food from our congregation. Mom is around. We have our dog. The sun is shining. A walk is in order and maybe even a quick, inspiring visit to the beach over the next few days. We will take our time adjusting to being home, relaxing and getting things in order. It is time for him to rest, gather his strength, nothing more, nothing less.
I must admit, there was a bit of sadness as I packed up yesterday. No walks with EmmaGirl, no visits from Audge, no Cooking with Sissy, and no Marie. We have enjoyed living with Marie. But we will be back and she says our room is open.
Friday, March 22, 2013
Audge and Lola coming over for coffee and breakfast
New sock yarn
Several kisses and a "thank you for being you" from My Handsome Prince
Jewish men and boys walking to their Temple
Pieces of April on tv even though it makes me cry
Rise Up Stout in bottles
The view from the Man's room
Patrick finished his radiation treatments on Wednesday for this portion of treatment. It's possible more will be on the agenda after surgery but I believe it depends on the surgery. The day he finished he immediately had an appointment with his medical oncologist who wanted to admit him yesterday for this last round of chemotherapy before surgery. We had other plans and went to dinner with family in Westminster and to Carroll Community College's production of Spring Awakening starring none other than Chris Z, our future son-in-law. It was a good night.
Instead he was admitted today for this round of chemotherapy. We got the call and were able to be there within the hour. He is on the same floor and section he has been twice before. They are starting to know him, know us. It's comforting. I am better preparing myself for any issues that may arise, even if we are home. And so it goes.
Tuesday, March 19, 2013
We had a quiet/busy weekend. I was busy, he was quiet. Pat was given instructions upon his release from the hospital not to go out, stay away from crowds, chill. So that's what he did. I felt the need to get things done or at least started. I had coffee with some friends who helped me bring home chairs I had stored at the center all winter. What a perfect early Saturday morning (so much so that i might even do it this Saturday!)Laundry, shopping, wedding research filled the hours of the day. Sunday another friend came over to help repair and paint the chairs. She came bearing gifts along with the gift of her time, a growler of EVO Rise Up stout for me and a snowflake obsidian for Pat. She told the story of her sister giving her the healing stone when she was going through her own cancer treatments. She wanted Pat to have it, to feel its healing energies. I'm not sure any of us could see straight after that.
And now here we are in the city again. We will stay through Friday. Wednesday will be the last radiation treatment as I said but also a visit with the medical oncologist to get the next portion of the schedule. I have a hair appointment with the girl who used to do my hair for years. We are going to Chris's (future SIL)performance Thursday night, then home, sweet home. For how long, who knows?
Thursday, March 14, 2013
Tuesday, March 12, 2013
Pat had a rough day today and rough night last night. He developed a fever last night. After an emergency call to the on call oncologist, it was decided that he should go to urgent care in the hospital in the morning. All of his body fluids were taken and tested. He has developed neutropenia. Several of his blood counts have dropped so low and his body has no way to fight off any infection. They are unsure of the source of the infection so are treating him with a wide spectrum antibiotic. He was admitted into the hospital and will stay a day or two. He will most likely receive a blood transfusion. By the end of the day today, he had eaten a bit, taken some drugs and sweet talked a nurse into making him a milkshake (actually she offered, should I be worried?). I do believe he is in good hands.
I go to bed tonight thankful for so much, a couple "I love you"s, caring, tender nurses in urgent care and 4a, a doctor who seeks us out in that great expanse of a hospital, endurance, and human kindness and connection in so many forms.
Friday, March 08, 2013
My Handsome prince was admitted to Hopkins at 8:30pm on Thursday, a week ago. Despite them having a bed for him, they were not quite ready for him. His chemotherapy was not ordered and did not start until 2:00pm the following day. And that is pretty much how the entire time went. In terms of the chemo, by the third bag he was pretty wiped out. Radiation treatment began the day after he was released. He's not feeling great, nothing really specific, just not good.
Yesterday we attended the Deployment Ceremony for the 290th MP Company. Pat was pretty much incognito, out of uniform, knit hat for his head and a mask over his nose and mouth. Yet most still knew it was him. In my observation he is well liked, respected and even loved by his work community. I know it was important to him to see this second group of soldiers off to their deployment.
Community seemed to be the theme this last week. I love driving through Audge's neighborhood on Saturday. She lives in a primarily Jewish neighborhood. On Saturdays, they walk to the Synagogue and home. They are in groups, families. I love the fact that they live and worship in the same community. We have a community in our congregation in Bethany who have filled a freezer full of food for us, a community of people in Catonsville with whom we we have not worshipped in years who still welcome us with open arms, and our community in the radiation department of Hopkins who missed us during our week off. Community is good for when you are lost, someone is there to guide you even when you aren't aware you needed it.
Wednesday, February 27, 2013
If we get a not yet on Thursday, i will bake some cookies, we WILL go to the correct location for the reception venue to check it out, do some birthday shopping for someone special, and of course, it will be thirsty Thursday so we will be back at DFH. Now you know because I've made plans, we get the go ahead. Murphy's law.
Friday, February 22, 2013
We are in limbo right now, not knowing whether he will be admitted this weekend for chemotherapy, not knowing whether we will go home.
Pat continues to stay strong, feel good, be in good spirits and of course, inappropriate at just the wrong time. Gotta love that man. I continue to knit, walk, and attend some great fitness classes. I love the choices. We hope to meet up with more friends next week and have more visitors and eat more good food as long as he keeps this up. If not, we are quite content just resting in our home away with our girls in and out.
ETA- Pat's oncologist stated that he has surprised them all. His blood counts have remained fairly steady, his side effects have been minimal. We are home in Dagsboro. Pat is on a waiting list for chemotherapy. They will call us when they have a room. Our bags are in the living room, half unpacked, half packed, ready to go at a moments notice.
Sunday, February 17, 2013
Lately this song has been running through my head. The line "Home is wherever there is you" especially rings true since we are living elsewhere. And though it rings true, something happens when we are truly home. All defenses come down. Decisions are not necessarily difficult but are just not made. Leaving the house is not desirable. We hole up with food and movies. Maybe it's the comfort of being home that causes Pat's body to say "Whew!" and he crashes on the weekend. There are no appointments, no one to see, no where to go. In addition to some minor physical side effects this weekend, My Handsome Prince has lost his hair. When Audrey and I got home from church this morning, Emma met us at the door and whispered, "Daddy is losing his hair...a lot." The girls got out the clippers, set him up in a chair in the kitchen and proceeded to buzz him. They gave him a mohawk just to take some bad ass photos then cleaned him up, put a hat on him and branded him Breaking Bad. Every time he enters the room, I'm still a bit taken aback, though truthfully he does not look a whole lot different than his co-workers with their high and tights. He's just tight, not so much high.
Wednesday, February 13, 2013
Tuesday was a much better energy day for both of us. I had a great walk in the morning, even getting lost, which was kind of thrilling in a fun way. We met Bill and Suzan for lunch at a small, local place, Ethel and Ramone's for some Maryland Creole cuisine on Fat Tuesday before radiation. Grocery shopping, cooking, catching up with Marie, dinner with the girls and pups made for feeling like we are home, sort of.
Pat is still feeling good, with the exception of some cold symptoms which if don't change in 24 hours, should probably be addressed. We are going to help Audrey with some things today, Emma and I are attending a Barre class (or getting our asses kicked) and getting Haute dogs for lunch. If ever in the area, The Haute Dog Cart is a hot dog you won't forget. Falls and Lake, cash only. Mmmmm.
I hope to see my Dad this week and my Sissy for more than five minutes. It's already Wednesday and I have a long list of things to do here in Baltimore. We lived in the area, well north by an hour, so there are things I know that I want to do. This is a more intimate experience with the city and there is much to experience, making the best of our time here. Hampden is on our list this week, although I already missed The Charm City Knitters at The Golden West, oh well, next week.
Thursday, February 07, 2013
Pat's radiation appointments are set all week for 2pm. It has taken until yesterday for them to get his positioning just right. He already has the routine down, check in at the front desk, walk back to radiation, change, and wait for his therapist. The radiation only takes 10-15 minutes. Right now, in his words, easy peasy. I went back with him yesterday as there is a waiting area for both patients and family members. It was very intimidating for me. The doors to the treatment area are 3 feet thick and close slowly with the patient inside. I told Pat when his door first started to close I wanted to scream STOP! And get him the hell out of dodge. He laughed at me.
Apparently there is a schedule and routine to the patients who are undergoing radiation. Same bat time, same bat channel. They know each other and an easy banter flows among them. I was a newcomer yesterday but by the end of Pats radiation I had histories of two patient's illnesses and questions about my knitting.
Evenings are spent with our girls. We remain at Marie's house. I've cooked and ordered out. We always invite Marie to join us, and she does when shes home and then we take over her living room, her tv. It's an invasion. I hope we are not overstepping and always ask her to tell us when we do. We watch movies and last night played our family favorite, a game of euchre. The good of all this is time spent as a family again, dinners together, games, and movies, not rushed or crammed into a weekend.
Pat continues to feel good and has a good appetite. Today we are going over to The Quarry to walk, have lunch and maybe do a little shoppy shop. Its good to get out other than the hospital.
Sunday, February 03, 2013
It is now Monday, his fluids are finished, he is good to go. I'll get him set up in his home away from home. That means sofa, remote, computer. I'll put on a pot of potato soup. We'll start a new routine for the week.
Friday, February 01, 2013
It's 10am and we are having our morning ritual of being on our separate computers chatting about whatever we find. The poetry of the Seth and Scott filter through the ipad. He is feeling good.. Our girls will come in again today and we will continue our game of Farkle we started yesterday. There were too many interruptions. I think today will be a bit quieter.
Addendum: Pats's day nurse today lives in the house next door to the one he grew up in, in Uniontown. They are chatting away about the town, mutual acquaintances, memories, etc. such a small world.
Wednesday, January 30, 2013
Sunday, January 27, 2013
Friday, January 25, 2013
Everything we do right now is spur of the moment. If you know us, it's a bit difficult as we are planners. There is that word again, flexibility. We received a phone call on wednesday at 3pm-ish (and an email on my smart phone) that Pat's simulation appointment for thursday morning was a go. Insurance was the hold up. They had not approved any treatment. Pat was positioned in a big pillow of little beads and then it was vacuumed to conform to his shape. He also has these stickers on his body for positioning and also for his little tattoo to come later. These stickers are supposed to stay on for the next week and a half! Good luck with that!
Today we have the plan for treatment. Pat will be admitted on Thursday, January 31 for 3 days of chemotherapy. He will have a little more than 24 hours rest and radiation will begin. We are still waiting on details but believe it will be every day for 5 business days. The we will go to our home in Dagsboro to rest and renew. We will have a local support with the Tunnel Cancer Center should we have any questions or concerns.
A smile and a wink, a care bear, some soup and chocolate chip cookies, laughing with our girls, cards from unexpected sources, Jesus, Jesus, Jesus, a simple "no" text from a supervisor, are just a few of the things that lift us.
Saturday, January 19, 2013
It's been a quiet week,a wet and cold week, and we've been striving for normalcy. Audrey left on Monday and we both promptly took a sofa and snoozed the afternoon away. We met our friend Vito and Kerry that evening at DFH because we knew we would not be meeting them the next two Thursdays (and Thursdays are the highlight of our week!). Other than that it's been work, errands, movies, battling a cold, and staying warm.
Thursday was the visit with the Radiation Doctor. Quite informative. Pat will be undergoing interdigitated chemotherapy and radiation treatment. This treatment entails three days of continuous drip chemotherapy, a day or two off, then five days radiation treatment. The chemotherapy's job is to kill any stray cells elsewhere in his body while the radiation is isolated to the sarcoma. With this, the radiation doses can be lower and in a smaller area. There is a lot of communication going on between the radiation department and the medical oncology department. This treatment depends on the calendars and schedules meshing. The first thing to happen before anything is a simulation for radiation. They take his scans, his body, his measurements and build this "machine" just for him to hold him in a position for periods of time, days in a row for the radiation. Once this is started, everything else can begin. Schedules, schedules, schedules.
Thursday was also a PET scan to determine that there is nothing else hidden anywhere. We have not gotten the results from that but do not get the impression they are expecting to find anything. It's a necessary precaution. Blood work, labs, and and EKG followed on Friday and Emma accompanied him.
In the meantime, Audrey had a doctors appointment on Friday morning. She and I drove to Carroll County, she snoozing, and me, well...that's another story. Let's just say I had an anxiety attack and needed to see a doctor. Audrey asked why the secrecy? I just could not add one more thing to my husbands mind nor to my children's. But it's also probably why I experienced it, internalizing everything.
So now I am feeling stupid and relieved. Knowledge is power.
And with the treatment ahead, Knowledge is power. I have some new books on my reading table, Cancer: 50 Essential Things to Do, Natural Strategies for Cancer Patients, and lastly Doug's Miracle, a re-read needed to keep the faith.
We have had an incredible outpouring of offers, of prayers, of concerns, and even just hellos. We hear you loud and clear and we are uplifted. Thank you.
We ended our day Friday, all four of us, at a pub downtown, laughing and crying and gathering strength from one another. That family of ours is pretty amazing.