Hallelujah

It was a lovely weekend, a lovely day, like old times. The only thing missing was church (well, and other family members) and that's not due to lack of faith, belief or desire. It just happens that way when the whole gang is visiting.  We hung out, played games, cooked delicious food, drank good beer and just rejoiced in our time together, in good health, rejoiced for future events and I know a few of us rejoiced for the risen one.

Today I am 50

And I am genuinely content, satisfied, dare I say I? Happy. I have made significant changes in my life the last several months. I have discovered things about myself this year and drawn on an inner strength that I did not know existed. I have loved the man in my life so fiercely and protectively and he is still here with me, 28 years and still counting. My girls are both in good places in their lives, though not without challenges, and have faced their Daddy's illness with such grace and strength that I am brought to my knees.  I have  renewed friendships and really made some genuine ones here in Delaware. I have developed my knitting to a higher level and it has brought me so much peace, meditation. One year ago, I was crying in the shower, dreading the day. It was the day we were to visit the medical oncologist and get the schedule of treatment. And afterwards, dreading dinner out, something I usually thoroughly enjoy and anticipate, making nice after receiving who knows what kind of news.  It was not the way I wanted to celebrate my birthday and yet, I survived the day. And look, I survived the year, on top. Happy Birthday to me. This year, My Handsome Prince threw a party for me like no other. Today, it's been a day spent with my Maminka, who came over for breakfast in the morning (another joy, that we can do that), an incredible post from my Sissy, another from my eldest and a phone call from the youngest and my father, knitting, working out, being serenaded by my trainer and her daughters (another reason to love her), knitting, snuggling with my Little man, and best of all chillin' with My Handsome Prince, making plans, watching movies and just being us. And here I am full of attitude for what's to come, for I know that I am in the moment with my contentment and there are challenges ahead.

The Rest of the Story

Remember this post? Well, I knit the hat, packaged it in a little gift bag and managed to stand at the front of the stage at DFH while my favorite musician, Anders Osborne, performed. I was close enough to smell his spearmint gum and felt like a little girl holding this package, all nervous to present it. At the end of his set, he exited  and everyone cheered for his encore. Before he began, I lifted up my bag, and with a tilt of his head, a surprised look on his face he said "for me?" And I nodded. The joy and smile on his face was perfect. I gave a gift, no expectations, and the response was genuine.

But wait, there is more.

This year, during a morning check in on my iPad, I came across a photo in my Facebook news feed and exclaimed "No way!"  I turned the screen around to show My Handsome Prince and he knew right away. He said, with some pride in his voice," He's wearing your hat". A professional photo of Anders Osborne performing, wearing the hat I knit for him. How cool is that? I saved the photo to my album and that was the end of that.

But wait, there is more.

My handsome Prince planned a party for my 50th birthday. It was at our favorite pub, the same place where Anders performed, the place where we have found our community of people, the place that we look forward to going every single week.  Family and friends from near and far joined us and it was a great evening. At one point, MHP wanted me to open the gift from him, a large package wrapped in brown craft paper. As I opened, I laughed. It was a photo of Anders, focused on his guitar, wearing my hat. It was signed, Dana, thanks for the hat, Anders. And I laughed again. Just call me knitter to a rock star! 

And now you know the rest of the story.

Happy New Year

We were cleaning for our the Christmas celebration we were hosting and found some old gift tags. They were from a present from my friend and I kept them because she made them. They were creative, lovely and I liked them. One of them read something along the lines of 2013 will be the best year yet! I voiced aloud, oh yeah, the best year yet, very sarcastically. There was a pause and then My Handsome Prince said but it was. And then he listed all the great things that had happened, most importantly the fact that he made it through. So yes, 2013 was the best year and do you know what? So will 2014. Happy new Year. May we all find the best yet in every year.

Campbell Hall

One of my tasks as Manager of the Conference Center was to go through each building, check them and lock them up. In Campbell Hall, I would run up the stairs, listening for the tap, tap, tap that almost sounded like someone following behind me. In the hallway upstairs I would stop, inhale deeply and be still, feeling the spirit of the place. I've said this before, but I believe that a place holds and absorbs the spirit of those who frequent it. Nothing is more true than this at the Christian Church Conference Center and Campbell Hall. On the day of the celebration for the life of Campbell Hall, the spirits began to leave in the form of tables and benches, windows and doors, shingles branded with it's image on them, a couple newel posts but most especially in the hearts of this who where there. They continued to ebb out as the fire company used it for training purposes, busting windows and going through the roof. And more the day the pickers came and took the rest of the doors and windows. By the time the actual demotion began, Campbell Hall was just an old building, past its prime, ready to go. As I watched the demolition I was giddy with excitement.  Finally! From a management standpoint, the building was difficult.  As I watched the demolition, at one point the entire east wall was gone and the stairs were exposed and I lost my composure. I cried tears of memories, smells, sounds. The demolition was fascinating, an art. The operator was precise, managing that huge thing like it was a surgical instrument. And it was done well. 

Now it is time for new experiences. We have a new building being built over the next several months. It will be handicap accessible, have air conditioning, two (count them!, two!) screened porches, ample meeting and lodging space. It will have its own sounds and smells. Those who frequent it will bring their laughter, tears and spirit. More couples will meet in this building, maybe sharing their first kiss on the elevator, and eventually marry (my sister met her husband at Campbell Hall). And people will examine their faith, question their faith, find their faith in God. How freaking awesome is that?!

Tribute

A month or so ago I received a note asking me if I would consider speaking at the retirement celebration for my boss. I was humbled and honored and panicked at this request. I asked for a few days to ponder and pray and then accepted. I fretted over this last month knowing what I wanted to say and wondering how to tell this man what an impact he has made on my life. And to do it without choking. Last night was the celebration and this is what I said to that man:

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?

Taking it Back

My heart, mind and body have spent 7 months caring for My Handsome Prince and my girls. My heart, mind and body have spent 5 seasons caring for the guests of the conference center. Now I am claiming some of my free time for me. My heart is free to love without worry, my mind allowed to day dream, and my body to work hard for my own benefit.

I hired a personal trainer. I hired her because she reminded me of me in my fitness days, fun, bossy, motivating, and knowledgeable. I guess I am tooting my own horn as much as hers. We met today for the first time. We are working outside for as long as possible with minimal equipment, a huge, heavy rope, TRX, and a mat.  What a glorious day to work out outside! What a challenging workout! Tomorrow I'm own my own with a brisk walk on the beach sans dogs with gallon jugs of water in each hand. She's gonna kick my ass and I'm going to love it!

When September Comes

I remember the days when my girls would start back to school.  It was a time of new schedules, experiences and possibilities. It is much the same now. We are home. For good.  Treatment is over, work (for me) is dwindling down, work is starting up (?) for My Handsome Prince. A routine is already being formed. We miss the girls but they are back to doing what they need to do. My Czech students will all be gone by tomorrow doing what they need to do.  There are some medical tests to be done over the next few weeks, a new pup entering the house, a new job, visits with friends near and far. All good stuff.

Like Clockwork

The fever usually hits between 3 and 7pm five days after discharge from chemotherapy. We started taking his temperature around 5pm and sure enough, it began to rise. This time we were already in Baltimore. I was hoping for a direct admission into Weinberg but that didn't happen. The on call oncologist directed us to the ED at Hopkins. We drove up to the entrance but there were so many people milling about, smoking, staggering, coughing, and who knows what else that the thought of dropping him off to park was not something I felt comfortable doing. So I drove over to the garage, parked then frantically ran all through the cavernous place looking for a wheelchair. A security guard directed me to one and I loaded him up.  We checked in with the admitting desk and were directed to sit in the waiting room and wait. I know the horror on my face was evident when I asked if there was a place away from everyone. We were instructed to wait in the vestibule so I parked My Handsome Prince in a corner. Neutropenia is nothing to mess with so I called the on call oncologist, again, and asked if she was sure this is where she wanted us to be. I just couldn't imagine it would be with all the germs in a packed emergency room. She assured me that we would be taken car of and within 10 minutes we were whisked back into a room, door closed, attendants all suited up with masks and gowns. In record time, blood was drawn, cultures taken and antibiotics started. His fever was down before he got to his room on the all too familiar yet reassuring 4A.

This has been a much easier time than the last episode. I don't look back a whole lot because then I start to wonder how in the hell we have made it. It's a lot easier to just be in the moment. The girls and I have had conversations about "the end". It will never be over, nor has it been for 21 years. The quarterly scans will continue for a few years then dwindle down to only a couple a year then possibly annually. Our greatest hope is that it never comes back and our reality is that it will never leave. We can live with that. Isnt that the point of all this?

This Is It

We arrived on Sunday. The staff on 4A presented My Handsome Prince with a card and some yummy goodies as a congratulations for treatment coming to an end. I have nothing for them but my eternal gratitude, appreciation and admiration for the job they do. Maybe I will pick up some donuts in the morning. 

Before he was admitted I asked him if he wanted to go downstairs to radiation and bang the gong after all was said and done. He said no though I am considering doing it myself. 

This round has gone pretty much like the others though it seems the toxic feeling comes just a bit earlier each time.  He was asked to participate in medical student training. A doctor brought in 5 students and proceeded to demonstrate how to get a medical history. She was quite thorough and even went beyond what we have ever experienced, asking emotional questions. These students looked like babies.  Pat was a good example with his long history, his ability to recall it all, and of course, his disposition. At the end, the doctor asked how, if at all, this cancer and all its consequences affected our girls, our life as a family since its been around as long as they have. My Handsome Prince looked to me to answer. I stated that it made us our strong unit, it defined us as to what is important in our lives, being together.  Our girls have been here every step of the way, not out of duty but of desire.

The last bag of chemotherapy ends tonight at 9pm and we will be out of Baltimore by 9am tomorrow morning. As I left this evening, I handed my ticket over to the parking attendant and said to him "I hope this is the last time" and his face softened with a lovely smile and said " I hope so too, I hope so too". 

Me

I'm sort of falling apart. I'm doing all the things I am supposed to but only sometimes. I told My Handsome Prince how I was feeling lately and he said, quite simply, "if it were me you'd make me see a doctor", so I did. I am fine, physically. My sister called, she is my rock and I gave it all to her. I called my boss, my confidant, and I gave it all to him. I went to the beach today with my girls and my Man.  I am not quite there but making progress. I called a local reiki healing masage therapist and will set up an appointment when we get back from Baltimore (we leave tomorrow). Balance. My inbox will never be empty so I must stop trying to complete it.

I hesitate to publish this but the writing itself is therapeutic. Thank you (already) for your loving thoughts and wishes. There is not a lot anyone can do for either of us. We ARE good just have our moments when we don't feel so good. And that is ok.

ETA later today: why oh why do I not ride my bike more often?! Pure joy.

 

Home Again, Again

We are home again. After I finished knitting my sweater, I started a hat. The NP from the Tunnel Cancer Ceneter said when I finished the hat My Handsome Prince was finished. When she walked in yesterday she asked if I was finished, I said close enough and she said well he is too! The crash is so sudden as is the recovery. Our girls were home waiting for us, anxious to see their Dad. We started a movie together but neither Pat nor I could stay up. Fatigue set in.  Today will be a quiet day for him. I think he wants to meet up with his good friend Andy, hang with the girls, snooze with puppies. I'm up early and back to work. Ugh. I have gotten to the point of absolute dread. 

Just Biding Our Time

Well, while some numbers slowly improve, some decrease. His fever is gone. He is grumpy. Both good signs. 

Tuesday

I got to the hospital late today. I wanted to go to the farmers market and get my cinnamon shorty. I got the last two. Everyone tells me to take care of myself but it is so incredibly hard to do and fills me with guilt. I know, my own problem. My Handsome Prince does not feel good. He has a low grade temperature, no white blood cells and neutrophils, and issues at both ends of his GI tract. That being said, it is all being addressed. Blood has been ordered as has Tylenol and some ointment. We will spend the afternoon and evening listening to a book on audible or podcasts, him snoozing, me knitting. And that's how I take care of myself, gathering the knowledge I need and sitting beside him. Oh, and knitting.

Sunday

Well we didn't make it. By 5:30pm the fever hit. I made the calls, asked if it could wait but was advised to hit the local Emergency Department. So here we sit at Beebe, again, answering all the same questions, waiting for lab results, arguing about use of the port, wondering if it will take 7 hours to get a room, regretting not making the trip to Baltimore this morning. Dammit Jim!

Home Again

We busted out of Hopkins on Tuesday. It is Saturday now. At first, this round seemed to hit Patrick a little harder, a little more nausea, a little more fatigue. He is on some nasty antibiotics to (hopefully) prevent any infection. Our coffee table is littered with prescription bottles. Audrey and Robert came to visit for a day.  He helped put up our poolside umbrella. It's the little things that don't get done until somebody thinks to help and then it's, wow! I wish I had done that earlier! Everyone offers to help but I never know what I need and nobody can give My Handsome Prince what he needs. He always says he "ain't never gonna be right" in jest but occasionally I can see in his eyes that he might actually believe it. It's rare but real. Once I told him "that's ok, you are perfect for me".

We were preparing for neutropenia, packing up and going to Baltimore on Sunday. Beebe is fine but Hopkins staff is comfortable and comforting. They know us. They know his history. He doesn't have to repeat it a million times. 

But today, Saturday, is a good day. We have decided to throw caution to the wind, enjoy our time at home, hopefully enjoy some visitors (though someone will have to wear masks, whether it be them or him), and make the trip if and only if he gets sick.

The end is in sight, of the treatment, of the season, of my job. I try not to put too much into the end but some days I can not help it. I am ready.

Grace

Sounds like the surround sound of 64 people serenading for the last time

Smells like hand sanitizer 

Is named Paige, Chawann, Sue, Karen, Kim for this round

Tastes like a delicious meal made by Mom or Marie

Sounds like the laughter of family humor

Looks like the couple in their 70's holding hands in the long hallway of the hospital

Is the end of several things in sight and new beginnings

Round 2 or 5

We kind of scheduled this one ourselves. We had company coming that doesn't come very often so we wanted to ensure we had time to enjoy them. I also really felt the need to complete some things at work. On Friday, we left without knowing whether My Handsome Prince would be admitted or not. The thought of tourist traffic on Saturday or Sunday filled us with dread. We arrived in Baltimore without any problem. We called Hopkins every so often during the whole journey but never got through. While grocery shopping one of our favorite nurses called Pat and asked "where are you?! We are ready and waiting." And they were. Everything laid out, everything ordered.

This round has been pretty much like all the others, though the toxic feeling has come a little early. The girls have come to visit as have other family members. He will be discharged tomorrow. He has appointment with his orthopedic oncologist immediately following discharge and then we will hit the road for home. We anticipate only being home a few days before we come back. We have decided we feel better being in Baltimore should the neutrapenia hit again. It has been a regular cycle of 10 days after beginning chemotherapy. I hope my dog can handle that and not cause too much trouble for my Mom.

As usual I spend my days knitting, listening to podcasts and watching him sleep. 

Time

Today My Handsome Prince had his blood drawn at the Tunnel Cancer Center. We probably waited an hour. We talked about how much of our time is spent just waiting as it is for most cancer patients. While we have found staff at both facilities to be kind, compassionate, competent and above, I wonder if they think about this precious time. Every minute is precious and can not be given back. We had a lovely weekend with Emma and Chris with no agenda. Time was on our side with plenty of lounging by the pool, movies and good eats. Sunday it was back to work for me. There is a large group of 64 for the week. Time will be scarce for me this week.

All levels are good for my man so they are ready to knock him back down. Already got the phone call that they will be ready for him tomorrow. Lets hope not. Pat's sister and Mom are heading this way and they don't get out here very often. Again, we need that time, they need that time.  But...I am anxious to see my Audrey.

Holy Frijoles, it's Friday!

We are a family that believes no news is good news. When I don't write, it's one of two things, no news or I am too bitchy and bitter to write something that won't upset someone, including me or My Handsome Prince. The last few days have actually been a bit of both.

Pat was finally released from Beebe on Wednesday.  His counts were not rising fast enough so several neupogen boosts were given and even a couple bags of platelets were needed. Wednesday morning the staff at Beebe was happy with his blood labs and told him he was good to go. We came home, re packed our already packed bags and hit the road for Baltimore. Emma and I had plans to see some good music, Audrey and Pat had plans to watch movies and hang out. The docs said it was ok so that's what we did.  Great concert, bad movie a good nights rest and we came home on Thursday mid  afternoon. We needed it.

His hair follicles are beginning to hurt and he can pull his hair out of his head, face and chest. Emma buzzed his head to avoid clumps in the shower. Other than that, he is feeling good. A communication with his Hopkins oncologist said that if his blood counts look normal on Monday, they'll hit him again next week :-( 

The light is there it just needs to shine a bit brighter.