Tuesday, December 31, 2013

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.

Wednesday, November 20, 2013

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?!



Monday, November 11, 2013

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?

Wednesday, September 25, 2013

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!

Friday, September 13, 2013

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.

Wednesday, September 04, 2013

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?

Tuesday, August 27, 2013

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". 

Wednesday, August 21, 2013

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.
 

Saturday, August 17, 2013

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. 

Wednesday, August 14, 2013

Just Biding Our Time

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

Tuesday, August 13, 2013

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, August 11, 2013

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!

Saturday, August 10, 2013

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.

Tuesday, August 06, 2013

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

Monday, August 05, 2013

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. 

Monday, July 29, 2013

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.

Thursday, July 25, 2013

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.

Monday, July 22, 2013

Monday

It looks as if we are spending my week off vacationing in Lewes Delaware. While it is our favorite place, Beebe is not quite what we had in mind. Today's report is better but not quite there. My Handsome Prince's neutrophils are just not reproducing enough. They gave him a boost shot last night which brought the count up slightly and will probably give another this evening. His platelets are low too so that may be on the menu also. He is feeling better, looking better and smelling better (he cleaned up today). We walked the hospital wing a couple times, watched some Andy, felt slightly sorry for ourselves and got over it. Release is most likely going to happen on Wednesday or Thursday.

Saturday, July 20, 2013

Saturday

It's Saturday and we are attempting a semblance of normal by listening to Car Talk which is something we have done on Saturday mornings since we got married, I think. But the difference today is we are sitting in a room in Beebe Medical Center. Or maybe that is the norm? Late in the evening last night, My Handsome Prince developed a fever. I made the phone calls to Hopkins, sent the emails to Hopkins, sent the text messages to family, while he packed his overnight bag, primarily packed. As a side note, we both keep a bag packed with our hospital necessities. Both have very different items. We were advised to go to the local ED while Hopkins informed them of our arrival. The usual cultures and counts taken, there was no question of his admission as his neutrophil count was one. Yes, one lonely neutrophil.  And this is where we are, waiting for those neutrophils to reproduce, while the antibiotics ward off the evils of even the simplest bacteria.
This afternoon began my week of time off from work. I worked last week even while in Baltimore, placing orders, fielding phone calls and emails. I was looking forward to a sunset paddle tonight, some real chilling with my Man, some beach time, some real time off.  They have been somewhat thwarted. Instead my time will be filled with knitting and podcasts and watching someone sleep.  And maybe I will walk to Lewes Bake Shop for a cappuccino and goodie. Yep that's a good thing.



Wednesday, July 17, 2013

Celebrate!

Another birthday. Our baby turned 21. Officially we are parents of adults now but it has been evident for some time. But Audrey? 21?! We decided to celebrate somewhat locally to Mt. Washington just in case and went to Woodberry Kitchen. What a lovely place in a very cool area! We were greeted with glasses and a bottle of Prosecco compliments of my Sissy. Such a surprise and a treat! We enjoyed dressing up, being out, conversation and presents. All too soon, it ended as My Handsome Prince experienced a wave of sickness and I immediately took him home. The restaurant was quick in packing up my dinner (it was just coming to the table) and we were off. The girls and their manses stayed, enjoyed their dinners and got special desserts from Woodberry in honor of the day. Just before midnight they texted and were on their way to the tavern and did I want to meet for one last, quick drink? I walked down the hill and we ended the evening very low key. Though the birthdays were not what we may have wanted or expected! they were both special because we were all together for them for the first time in a long while. 
My Handsome Prince is feeling fine this morning. We are heading home today. Time for him to isolate himself for a few days, time for me to work for a few days. As usual, we will miss our girls. 

Monday, July 15, 2013

They Say it's Your Birthday!

Chemotherapy over for this round, it's time to party! My handsome Prince endured the typical 3, 24 hour bags of chemo drugs along with an additional short release one, and finished just in time to celebrate his own birthday! He will gladly tell you he turned shfifty five. The girls and their manses came over for dinner, presents, cake and ice cream.  Today has been a very, very low key day. We are without television and have only intermittent Internet. I am heading to an aqua zumba class at Emma's pool tonight. Tomorrow is a marathon appointment day at Hopkins and hopefully all will be well to head home to Delaware on Wednesday. Oh and we have another birthday to celebrate tomorrow! Our Audge is 21! How in the world did that happen?

Wednesday, July 10, 2013

And So it Begins Again

We arrived in Baltimore on Wednesday for yet another check in with the Orthopedic oncologist. When we were here last, three weeks ago, he did not think My Handsome Prince was ready to begin the chemotherapy regime but he did remove all the staples from the incision. This time around there were a few stitches still in place that needed to be removed along with needing the final ok to begin chemotherapy.  Stitches out, ok granted, and he had himself a room in a familiar place and actually was greeted with a hug from one of the nurses. Chemotherapy began at 1am this morning and it has been extended to 4 continuous days instead of 3.
Before getting the room, wandering the halls of outpatient, Zayed, and Weinberg, we saw so many familiar faces. We also realized that it has been 6 months we have been visiting on a regular 
Onward we move. 

Sunday, June 23, 2013

Perfect Summer Solstice

A shower for My Handsome Prince, the first in weeks
A paddle for me

Shrimp and fresh picked corn on the deck with Maminka

A dip in the pool and a cold one

It couldn't have started better

Friday, June 07, 2013

There is No Place Like Home

While this is true, I must admit the euphoria wore off and reality set in. Overwhelmed is a great word. It can go both ways, overwhelmed with boredom, stress, work, frustration or overwhelmed with contentment, support, movies and more. I think we both have felt all and more. My Handsome Prince continues to gain strength and movement. We go to church and the DQ for Cruz-n night together. Most days he is by himself while I work. Tomorrow is an appointment with the Oncologist. A co -worker of his is coming to get him and take him across the bridge to Hopkins.  Emma will meet him for the appointment. He will receive, hopefully, the schedule for the next three rounds of chemotherapy. well, at least the first because the next two depend on his counts. A group of 53 will be at the center and tomorrow is the first day for my new Czech staff to cook. I feel so torn with the need to accompany my Man and the need to train my staff myself so they can take over if needed in my absence later in the season. Tomorrow will be a rough day for me. 

On the bright side, pathology report came back with 80% necrosis and the margins clean, which means they took out all of the sarcoma (that was questionable at time of surgery) and that 80% of it was dead. All of that is good news. The plan is that the chemotherapy will continue to knock out any stray cells.

More good news. We always knew our daughters are special and stand out but Audrey was 1in 12,000 chosen for her internship at Nordstrom. This week she got to meet Eric Nordstrom. Me? I am knitter to the rock stars. Just ask me about it and ill be happy to tell you :-)

Thursday, May 30, 2013

Day 17 HOME!

We came home late afternoon Tuesday. There is nothing like being home to make all things seem possible. We are all adjusting. The Bear is not adjusting as well as we are. She is not eating or making her noises. It's sad. I'm hoping another day or two of walks will shape her up. Today a home health care nurse will come and assess My Handsome Prince, change his dressing and do whatever else that needs to be done. I think home PT will be the next step. He has taken over my recliner, which I have gladly handed over. It's comfortable and keeps his legs elevated.  We are happy, the weather is gorgeous. 

Yesterday I kept wondering when my girls would come over and realized they wouldn't be coming for a week or more :-( 

And even though the dog is showing signs of depression those belly rubs help (both of them, I think)

Saturday, May 25, 2013

The 12 Days of Hopkins

Finally, Friday was discharge day. It happened within an hour. We got the news a bed was open at Good Samaritan Rehab, insurance approved the stay, ambulance transport was on its way, port flushed, IV removed, room packed up and off he went! I had to go buy The Man some shoes and socks for therapy. I must say that communication and openness is not one of his doctor's strong points. We were totally unprepared for this though the questions were asked initially, hence having to buy shoes and socks.  It was such a strange feeling to be leaving Hopkins. We were so anxious to leave yet I felt a bit of sadness. How do I express the gratitude to those who were so caring? I knew the names of over a dozen nurses, techs, a nurse practioner and a few doctors.  I wanted to wave and yell thanks! You do a good job! Like the man a couple rooms down the hall did. Instead I thanked one nurse and walked slowly down the hall by myself a bit teary, a bit relieved, and a bit nervous for the next part.

Thursday, May 23, 2013

Tomorrow- Day 11

Each day it's "tomorrow looks good for discharge from the hospital and admission to rehab" and each day My Handsome Prince remains in the same room in the same building. Physical therapy in the gym is fantastic. It is two therapists on one patient.They ask us both what our concerns are, what we want worked on, yes both of us! They know I will carry on at home. Our biggest concern is the car right now, how the hell to get in and out without breaking those hip precautions. The desired rehab facility at Hopkins is full and won't have a bed until the weekend is over so we are looking at another Hopkins facility on the other side of the city. Tomorrow. Keep your fingers crossed. If not he will graduate before being admitted.  At this point I still think rehab will give him/us some great advantages and learning experiences that we will not get otherwise.  And we've been sent home unprepared before. I am determined not to let it happen again.  While the man may rock PT, OT is another story though he did learn to put his pants on today.

And just because I love these people so much! 

Wednesday, May 22, 2013

On Fire! Day 10

Well My Man is on fire today! The NG tube has been removed and physical therapy was great! He is working on sitting and standing from low surfaces, mastering stairs, and basic walking. He has several hip precautions so has to relearn some basic functions. Right now the plan remains with discharge tomorrow and admission straight to rehab, one section of Hopkins to another. We feel more comfortable with rehab for several days rather than going straight home. Time to learn and gather strength, personal training for basic living.

Here he is happy, hairy and tubeless

Tuesday, May 21, 2013

Day 9

I feel so self centered today. We do not turn on the television much while we are in the hospital. The mornings are very busy with doctor visits, physical therapy, occupational therapy, visits from social workers, rehab representatives or whoever the person of the day is. Then after several hours of this, My Handsome Prince needs quiet and rest so he sleeps while I play music or podcasts. We completely missed the Oklahoma tragedy until late at night. I can not even imagine. I just whisper my hopes and thoughts for these affected and hope they hear them in someway.

Things are progressing for the Man. He continues to work with physical therapy, assisted and reminded of certain things and so determined. Systems are working so the tube should be out by this afternoon. That alone will be enough progress.  We are hoping for discharge from the hospital tomorrow and admission to rehab. 

Marie comes home tomorrow. I have not spent any time in the house. I leave early and come home late. I hope she is not too surprised to see me there!

And today I thank my daughters for their strength and support. They may not know but their visits, phone calls and check ins have kept me going. They may have thought they were visiting their Daddy but they were holding me. I love those girls.




Sunday, May 19, 2013

Farts Make Me Laugh

Or in this case, make me smile because it means certain parts are waking up.

My Handsome Prince managed a walk down the hallway today. Wore. Him. Out. We had some visitors today too, a co worker of his, my Dad, and Emma and Chris. He is not talking much because of the tube down his throat so he just listens. They didn't stay long although I suspect Chris wanted to finish watching the movie he started.

I'm going home soon and having a pizza delivered. Earlier MHP said he would give $100 to have a coke and a pizza. As soon as things are moving consistently, guess what I'm bringing him?


Saturday, May 18, 2013

Friday, May 17, 2013

Day 5

I have sent so may text messages and emails that my eyes are blurred. If you don't hear from me personally, come here to get the news.

TGFO! Thank goodness Friday's over! What a rough day. Sometime during the night My Handsome Prince's abdominal discomfort became so bad it caused some shortness of breath. An EKG was ordered along with a CT scan with contrast of his chest, one to rule out a heart problem the other to rule out more blood clots in the lungs. The good news is that both are free and clear including the previous clots. The bad news is he has post surgical ileus, a paralysis of the stomach. To deal with this, he is not allowed any food or liquids until his stomach starts working on the body's own fluids. He also has a tube inserted into his nose, down his throat to his stomach to pump out the extra fluid. The abdominal pressure has been relieved but he HATES the tube. Time is the real healer though. They keep saying one day at a time, so cliche but oh so true.
He has a new brace on his leg which provides a lot more support but he has not moved since it was fitted. Hopefully he will get put of bed today with physical therapy so he can experience it. It goes around his hips all the way down to his foot. 
The tv has been activated, he has his computer and he is texting and conversing, all signs that he is back on the path to recovery.
Leaving the hospital these days has been so difficult. I feel so sad, so guilty, so tired. I know that I must be on my best game every day to ask the questions, demand the answers, get the scoop. I only stayed until 7pm on Friday and got home early enough to enjoy a bourbon on the deck with Emma and Apple Sunshine. A good end to a long, difficult day.
Today, Saturday, is a new day and full of promise. Pat texted me at 7am, his dressings have been changed and the incision/wound appears to be healing (a concern after 6 surgeries already using same incision site and radiation). He has already had his morning x-ray and has to have the tube another 24 hours. Physical therapy will be here noonish to work with him and his new brace. We are watching a Rawhide marathon, young Clint. See? Full of promise (and naps).

Thursday, May 16, 2013

Just the Two of Us - Day 4

Not much news today. It was just the two of us, no visitors. Though several wanted to come, we thought it best to not have any. We were visited by the social worker and representatives from two different rehab facilities. We are going to stay put at the Hopkins facility.  There is comfort in familiarity and being close to his doctors. 

See the second corner window from the top? That's the Man's room.

Wednesday, May 15, 2013

Monkeying Around -day 3

I didn't get to the hospital until after 11am. My old friend Holly was in the area so she came for a visit. We were very young Mothers together in Manchester. Some relationships never change. It was a quick catch up but oh so good. By the time I arrived at the hospital, My Handsome Prince was already sitting in the chair. Medically things have been removed, drugs and dressings have been changed. The ortho team has been in several times. There is talk of a rehab center upon release. Progress has been made in inches. Today is just one of those days where he is wiped out, physically and emotionally, that is until those girls of his come in and kiss the top of his head and leave him with a monkey.  He goes back to sleep with a smile on his face.

Tuesday, May 14, 2013

Day Two

Today has just flown by, quite the opposite of yesterday. I got to the hospital around 9am this morning (yes, I went home last night), silenced the phones reclined the chair next to the man and we snoozedI told him I liked sleeping with him even if it is in a chair beside him. He gave me his smile and "hmm". Then things just started happening around here, pharmacy came in with a brace, the girls came in to see their Daddy's face, physical therapy came in to start and the next thing I knew, it was 3:00. He is sitting in a chair, snoozing. It probably took an hour to get there, some exclamations, some nausea, and pain meds but it means progress.  I might go to Maverick Dance Party with Emma to work off some stress and go to bed early tonight. I'll do my grocery shopping in the morn. 


Monday, May 13, 2013

Stand By My Man

We got to Hopkins by 5:30 this morning with Bill arriving on our coat tails by 6am. I think Pat was in pre-op from 7-8 am and we were able to visit with him there before surgery.  They kicked us out around 8am and whisked him into surgery. Johns Hopkins hospital has a liaison between the operating room and the waiting room. They took a good look at me, a description of my clothing along with a cell number and names and numbers of others joining me. After three, they said that's enough. Our minister, Chris, drove over the bridge to be with us, my Sissy came bearing a gourmet lunch and the girls came with games. We occupied ourselves with stories, laughter and games because that's how we roll, our defense. We got updates about every 2 hours but all they stated was that he was still in surgery and stable. Sissy left after a while, Chris left. The girls stayed until they received the news that their Daddy was out of surgery and not going to ICU. The surgery was 9 hours. Bill waited until he could see his son. They let us go in but one at a time. I went first. He looked so small, so sad. I felt so sad and a bit nauseous. He had some serious anesthesia and was having trouble determining what was real and what wasn't. I warned Bill before he went in. After a while Bill went home.

It's a little after 9pm. He is coming out of his drug induced haze and administering a differently type of drug. He is making jokes, as usual, that's how he rolls, his defense. We are still in recovery but anticipate going up to his room soon. I have my pillow and blanket in the car if I feel I need to stay the night with him and the offer from Suzan that she will come stay with him so I can go home and get some rest. 

Thumbs up from the man :-)

Friday, May 10, 2013

The Waiting Game is Over

Surgery is scheduled for Monday, May 13. We have to be at the hospital by 5:30am so we will head to Baltimore on Sunday night.  And that's all I have to say about that.

Monday, May 06, 2013

The Weekend was Just Allright!

Allright or Epic, depending on your era :-)
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

Sh*t Happens

We arrived in Baltimore in time for scheduled testing and a consult with the plastic surgeon and then home to Mt. Washington by early afternoon. I spent the afternoon reading on the deck while Pat attended to a house issue, still unresolved. In the middle of this ordinary afternoon, he received a call from Hopkins stating that his insurance did not approve the surgery yet and did we have tens of thousands of dollars to pay for said surgery instead. Come to find out, the papers were not even submitted until yesterday afternoon. Because we generally do not keep that kind of money and it would require some work to acquire it, Hopkins decided it best to postpone the surgery. WTF?
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

Prayer

The Senior Spring retreat is coming up and the theme is prayer.  My Dad wants to use Anne Lamott's book "Help, Thanks, Wow" as discussion along with music as prayer and an examination of the Lord's Prayer. My position at the Conference Center has enabled me to hear many prayers and be included in prayer.  I'm amazed sometimes at the eloquent words used and the flow.  Or the simple thank yous that come out quietly when someone else is praying.  I watched a group of people set up one time then walk into every lodging room on the property  and pray for those who would be in those rooms.  It was very intentional. When asked to pray sometimes I think about it so hard it becomes more of a composition than a prayer, a project. And I sweat. Last night we received this prayer from our friend Rick.  It's simplicity and intent and wish made me cry as I read it to my husband.

I hold this family in your light.
I pray for them to get their miracle, and to have stamina.
I pray for them to be okay today;
For their love, and their amazing senses of humor to help them through this.
Thank you in advance for your company and blessing.
You have never once let me down.
Amen
 
The group that is at the center for the next few days are regulars.  There is a relationship that develops over time with regulars.  Today some of them asked to pray for us.  We held hands and beautiful, heartfelt wishes flowed and again I cried. 
 
I downloaded Anne Lamott's book and there is hope for me, to learn to pray, to learn to ask, to learn to be grateful and gracious, and lastly to still be filled with wonder and express it. 

Tuesday, April 30, 2013

Rainy Days and Mondays

Yesterday was a perfect rainy Monday.  We slept in, drank our coffee and though we had an agenda, it was somewhat relaxed and good stuff.  We drove to Lewes to book the beach for a wedding and The Virden Center for a reception.  Those tasks finished it was just about lunch time.  We weighed our options and decided on A Touch of Italy in Lewes.  We had water with gas (okay it was San Pelligrino), a 60 minute, and delicious food.  For one moment, I was transported back to our trips to Italy.  Perfect.  We stopped at Mom's on the way back to help with a couple minor items.  It's so nice to be able to do that on a whim rather than carve out a whole day like we used to.  And then...the best...an afternoon nap, jammies, movies, leftover lunch, knitting, and nothing.  Perfect.

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. 
 
Tomorrow Pat will attend yet another deployment ceremony for another one of his units.  This is number three.  Over the next couple days we will gather our thoughts and questions, pack our bags, make necessary arrangements, and hit the road. 

Friday, April 26, 2013

Somebody Scream Y'all!

Jazz fest started today. Another year originally planned and again foiled. Emma and Chris and Cindi are there representing. We drove home today, sunroof open, Soundtrack from Treme blaring, and even stopped to buy tickets to see Anders Osborne opening acoustically for Toots and the Maytalls. And then we crossed the bridge to slower days, a weekend with Audrey and friend Robert, a weekend of work and decisions for me and a full week to prepare. Later Emma called me and let me listen to my man Anders at the fest. All is right, right now

Wednesday, April 24, 2013

Spring Break

Well, it's over. It was nice while it lasted. Tuesday was a scheduled marathon day at Hopkins. Pat was scheduled for CT scans, pre op work with EKG, blood work, consults with orthopedic oncologist and plastic surgeon and a possible meet with the medical oncologist. We expected a very, very long day but not an overnight stay. Only about half way through everything and running extremely late, we met with his long time orthopedic oncologist and surgeon. He gave us the results of Pat's chest CT scan, which showed blood clots, a very brief overview of the upcoming surgery and then immediately transported him to admitting. I'm not sure how long it was before we closed our mouths.

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

Sunday

It's about time, right? Life has been so close to normal I didn't want to upset the balance by writing an update.

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

Happy Thursday

We love Thursdays. It's our usual night out at DFH where we meet our friends, have a mug of great beer and pizza. Well, we haven't done that in quite a while but there are still good things about Thursday.
Clean underwear
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

Finding Our Way

My Dad heard a story on NPR about whales and communication. Not only do they sing. They compose their whale song. In the deep expanse, the depths of the ocean, something so much bigger than them, they find their way, singing. I'm pretty sure he used this in his sermon yesterday. It's been in my head ever since he told me.
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

Snow or Mow

On Monday it snowed in Baltimore. I woke to 2 1/2 - 3 inches on the deck but nothing on the roads. I watched for an hour or more before I ventured out, just to be safe. I was complaining about the snow, the wet, the weather and having to be out in it. When I went to bed that night I realized that last year, by this time, we had mowed our lawn twice. Oh, and we complained about that last year too. Time to change the 'tude!

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

TGIF

Things that made me happy today:
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

Finnegan Begin Again

Well, it's Tuesday and we are in the routine again. BUT...tomorrow is the last day for radiation. I was going to invite the girls for the bell ringing but it does not really mean anything to My Handsome Prince. Radiation is just one piece of the whole pie. When it's all said and done then he can whack the shit out of something, have a party, scream at the top of his lungs, whatever. I think our friends Tom and Pam might come out for it but that's because they have gone through the whole thing. It gives us an excuse to get together, maybe go out to eat.

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

A Quickie

Patrick is doing much better. A mega dose of wide spectrum antibiotics, some platelets, pain meds and constant monitoring have made him much more comfortable. They have not determined the source of infection if there even was an infection. I hope he gets released today or tomorrow. I'm going in to visit a bit later as I have a wedding dress look at with my daughter. She thinks she has found "the one". In the midst of all of this we have the joy of planning a beach wedding. Life is good.

Tuesday, March 12, 2013

Take The Good With The Bad

We formed a community (there is that word again) with the people in the same general radiation time slot. I remember, just a few weeks ago, being the newcomer and wondering how they can speak with such ease as I panicked. Last week there was a newcomer. Her man was being treated and she was crying quietly. I should have had the courage to sit by her and just touch her hand, but I didn't. I thought about her all weekend. Today she was just like the rest of us, finding the solidarity that comes with the illness and the treatment. One of our friends, Tom, got to ring the bell today, his treatment done. He left with all of us promising to stay in touch. As he left he said he loved us. And I know he does, and we him/them. He waited for Pat to finish his treatment so Pat could witness it. They shook hands with tears as men sometimes do, and wished each other good health. I took their photo.
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

Lost

I lost a whole week. No motivation for anything. I just went through the motions. But I am back and here is our update:
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

Limbo

It's Wednesday and we are still in Dagsboro. We had a nice weekend. The Man's energy was good, although a nap was on the agenda every afternoon. He puttered around with the scooter while I got beautified (finally!). Auntie and Uncle were in town so we had a short visit with them. We even made it to our local haunt, DFH. It was nice to be missed :-) We had thought we would be back in Baltimore on Monday so we packed, straightened and watched movies all day. The call came late at night saying not yet, we'll call tomorrow. Again, we prepped, the call came, not yet. By now, we both are a bit antsy and bored. We can't really plan anything because we need to be ready to leave at a moments notice. So today, when we REALLY thought we'd be going and we still got a not yet, we knew we had to get out. A trip to Mom's to install a printer which was only supposed to take minutes turned into an hour so we all made the trip to the new Millsboro Bake Shop which was spot on. Delicious! Although I could still just eat a can of almond cake and pastry filling all by itself. Then the intent was to visit a wedding reception venue, which I had incorrect. We just visited a church's fellowship hall. Oh well. In the evening, we decided to walk to the movies. Argo was playing at The Clayton. It was a lovely evening for a walk and the movie was great! It ended up a good day.
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

Time

It's already Friday. It seems as soon as we get on the beltway we change our pace. We've met family for coffee, for lunch, we've hung out at Barnes and Noble, run errands, had a visitor,I've had two great fitness classes, picked up food from Mom's friend (my Mom has the best, thoughtful friends), and of course every afternoon is at Johns Hopkins. Yesterday was a meeting with the radiation team and today is a meeting with the oncology team. Go, go, go! Luckily every evening MHP is able to grab the remote, stretch out on the sofa, and reunite with Andy and Barney or watch a movie. The girls have been in and out this week.
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

Home


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.



Thursday, February 14, 2013

Wednesday, February 13, 2013

Cookie Wednesday

For the gang I hang with these days. Of course I also made some for our children, our host Marie and her Grandkids. Spread the love.

Back in Bawlamer, Hon!

Our weekend home was just what it needed to be. We puttered around the house, got Audge out on her scooter, had dinner at Mom's, got our dog back and then CRASH! Pat was wiped out from Saturday afternoon until Monday evening. He was just tired and achey, all expected. He snoozed and rested until we made our way back here and once here, snoozed during radiation and chilled on the couch.
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

Mt. Washington Days

We are developing a rhythm, a routine here in Mt. Washington. We have coffee with Marie every morning, listening to NPR. Marie retreats upstairs to do her thing, Pat surfs the net, and I walk. I love the streets of Mt. Washington. They provide a challenge with the steep climbs and the houses are quite grand. Apparently, in the early 19th century, this area was a retreat for the wealthy to escape the oppressive heat of the city and was part of the streetcar line.
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

Super Bowl Sunday

JHH is like a ghost town on the weekend. Even more so today than yesterday. The same in Pat's room. He had a steady stream of visitors Friday and Saturday. We had music playing, games in progress, walks around the small wing and tons of snacks. He has been his charming, outgoing, inappropriate self. Today was just us with the exception of a short visit and prayer with my Dad. It was needed too. Pat is having some minor repercussions of the chemicals in his body and rest was difficult last night. He spent most of the day snoozing but woke up early enough to be ready for the game. Those who were working in this ghost town were sporting their purple. Audrey and I stayed until halftime then left him on his own. I got a text later in the evening stating his last bag of chemo was done! Discharge in the morning!

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

Friday

Yesterday I dropped Pat off at Hopkins at 10am. I then left to get a key from Marie, the woman in whose house we are living. Sometimes the kindness of others leaves me speechless. She moved out of her first floor bedroom and bathroom so we could have them. She knows, first hand, the difficulties that can be encountered. I managed to get back to Hopkins to get the full description of the port being place in Pat's upper right neck/chest area. They gave us 1 1/2 hour time frame but he was done in less than an hour. He came out of it feeling fine and wears a rubber bracelet stating he has a port. The girls arrived in time to visit in recovery. Luckily Pat was assigned a room almost immediately and they escorted him straight up to his room. We were told the night before that the possibility of him getting bumped and not getting a room was great so we were quite happy to get a room. He has a large, private room. The staff is very acommodating. This wing is set up for families with a small pantry where we can store food. The whole time Pat was in his room, there were people taking vitals, labs, surveys, urine, etc. I left around 7pm because I still had to do a bit of grocery shopping to set myself up at Maries. I was home (in my new home) by 8:30 after dropping Audrey off and shopping. Emma stayed with Pat until his chemotherapy bag was set up. They did not set it up until 9:30ish. They had to give him so many liters of fluid then measure his output before they could start. I called Emma a little after 10 to check in and see if there was anything I needed to know. She stated that he will be in the hospital until Monday.
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

Preparedness

I've learned how to prepare for a storm. I've boarded up buildings, tied up furniture, stockpiled food and water, taped windows. For this next storm, I am at a loss. I've packed up my clothes, have enough knitting projects to last a year, found a place to live temporarily, and bought enough hand sanitizer and chlorox wipes to probably have stock on them. I've made doctors appointments and gathered records. Ive made arrangements for the dog, the mail, and even to have my sofas cleaned. Tomorrow we leave. Pat receives his port in the morning and will be admitted into the hospital that afternoon/evening. I am not even sure how long we will be gone though the estimate is 9 days, initially. I leave his care in the capable hands of doctors, I gather my strength from generous and willing family and friends and I pray.

Sunday, January 27, 2013

Perfect Winter Weekend


  • Nowhere to go
  • A quiet evening snow
  • Movies, movies, movies
  • Hot, hearty, healthy (for the most part) meals
  • Procrastinated projects completed
  • Closet purge
  • A cold, brisk walk (me)
  • Dinner with good friends


Friday, January 25, 2013

I Love Technology

Yesterday, between sitting in the waiting room and an examining room in the radiation center of JHH, I was able to talk with The Tunnel Cancer Center, email the medical oncology department of JHH, answer a question, have a question answered, receive emails back, and have records faxed to Delaware. Gotta love the smart phone. Yet the TCC doesn't have the capability to scan and email a document and we have to drive there today. Sheesh. Get with the times.

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

Saturday

It's cold but the sun is shining.  Pat is on a plane to Detroit with his Dad, I just Zumba'd away some calories, had breakfast at Mom's, and am going to meet a friend at EVO to drink a beer and shoot the breeze.  It's a good time to get away and do fun stuff.
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.

Friday, January 18, 2013

This Moment

A moment from the week to savor, no words