Communal Living

In spite of what we heard in our 20's about all the "beatniks" and communal living, mostly in California, we have been inducted into that society!  We do not wear peace symbols, scarves around our heads, nor do we pass flowers.  We are not referred to as the "flower children of the 60's".  We belong to a group of compassionate people who are trying to find solace through communal living, called Caring House.

Each of the families here are provided their own private space within the confines of their rooms.  We do, however come together for all our meals, and any of the many activities afforded us by the army of volunteers.  Last evening Lee enjoyed gathering in the central communal (living) area to watch the world series with some of the friends we have made here.  I was tired after contributing to the large pot-luck dinner for preparation and clean-up so I decided to watch the game from my bed while resting.  We have become a family.........a family of complete strangers who share their stories of  circumstances involving families, sickness, recovery, etc.  We share food together that has been prepared each Wednesday by those of us residing here. Most of the other days, food is contributed by volunteers, restaurants, or well-meaning businesses.  Our new friendships provide outlets for stress by sharing our stories that are more often than not punctuated with laughter, not tears.  I once read that it is only when you accept your own mortality that you can truly begin to live!  That is what we witness here!  That acceptance brings joy each day for the new day, regardless of the weather.  We are greeted by others who pronounce each day as GOOD!

During the course of a day, we meet newcomers and we sadly say good-bye to those who have completed their course of treatment.  Along with the good-byes there are promises of meeting again, somewhere along the way. There are those whom we know we will never see again because of the advanced condition of their cancer.  These are the ones with metastatic brain tumors.  They are the very brave ones....always smiling, chin up and moving along to the next session of treatment.  There are also the ones we see who appear to have conquered the madness of cancer and show daily improvement.  Some are optimistic that it is completely gone when they return from the body scans that follow the long journey.

Yesterday we met Oliver.  He has been fighting squamous cell carcinoma for the past ten years.  He is a retired military person who worked with nuclear submarines.  To Date he has had over twenty squamous cell carcinomas on his face, head and ears.  The entire left side of his face is disfigured from all the surgery and radiation.  His left eye had to be removed and replaced with a graft.  The left side of his face is now paralyzed from the removal of his facial nerve.  His tongue is partially paralyzed and he has great difficulty communicating.  He is not an old man.  He is in his early to mid sixties.  He does not complain, and his wife helps him communicate with others. Another example as one of those who are fortunate to be here at the Caring House. 

Lee has reached the level in his radiation therapy that leaves him extremely fatigued.  He goes to bed after lunch each day and sleeps for at least two hours.  He feels much better when he awakes and is able to go longer at night.  He is especially tired today because he stayed up until midnight after watching the world series.  So far, his heart is cooperating with the medication and we are looking forward to his appointment with the lung transplant doctor early Monday to discuss the plan of action to keep the transplanted lung from going into rejection.

From time to time I tease Lee by telling him he is the world's only walking encyclopedia of diseases and therapy.  He is also the world's most determined and ambitious man in conquering all the ravages of disease that have attacked his body.

We are looking forward to Tomorrow......Friday.  A short week-end, but will be good to be at home.

More Later...............................................Brenda

Radiation, Day 11

Nine more days to go! Even though I am giving the big "Hurrahs", it is not without many concerns. The tumor that erupted last week, only eight days ago appears to be growing. It is, however growing differently. Lee jokes that he is growing a horn. Instead of a spreading appearance, this tumor is jutting forward and up. It is very red and has the appearance of an angry mass. Again, we joke that it will help with his Halloween costume as the devil. Today Lee had his weekly visit with the oncologist. The focus was on this new growth. In the beginning they decided that three more intense radiation treatments in addition to the regular radiation would be done. Today, they have decided to do some more intense radiation on that area as before. Lee has begun to show some of the effects of radiation. His scalp and forehead are red as in a bad sunburn. He says his scalp itches all the time. Both his eyes are red as if he had been in the sun too long. His eyes are also itchy. Yesterday we bought some aloe, which was suggested to relieve the itching on his head. liquid tears were advised for his eyes. He has been tired, but we still don't know if that is from the heart problem he had for three weeks (corrected over the week-end) or that he may be in lung rejection due to reduction of his anti-rejection meds. As you can see, Lee is fighting three major battles now, and either of the three are life-threatening if they fail. He is being treated in all areas and we are praying for success in all three. We are fortunate to be here at the Caring House in Durham. Lee is surrounded by all the doctors who are involved in his care. They are working together to help him overcome these many battles he faces. We have met so many people at the cancer center. As I wait in the large waiting room, I meet many other patients and caregivers who share their story. I have found that most everyone wants to talk to a good listener, and I have been able to listen, and then to help in some small way by either providing an ounce of encouragement, or evoking laughter that emerges from their depth of despair. Here is one example: I had observed Becky walking about through the clinic waiting room. She was small in stature, estimated age, early to mid 70's. She rarely looked up, head usually downcast. She wore a cute cap in colors of pink and gray. She reminded me of my sister-in-law. The second day I saw Becky, she was standing by the refreshments area, as was I. Her husband was concerned that she was not eating and was quietly encouraging her to try some food. I began the conversation by introducing myself. From there, the conversation continued and Becky shared her story: Becky is a retired school teacher, mother, grandmother and proud owner of two grey-hound family members. This past September she had a seizure. From that moment on, everything led to the confirmative diagnosis of glioblastoma (malignant brain tumor). Shortly after, she had surgery @ Duke and is following with radiation. She is afraid. I shared a story about my sister-in-law who had surgery by the same neurosurgeon ten years ago. Her eyes lit up when I said ten years! She wanted to know how she was doing. I described how, at 83, she is a very active person, enjoying life. I did tell her that my sister's tumor was benign. I don't know if Becky made the connection between the difference between the two tumors or not. I did not explain further because she did not ask. I do know that since that day, we look for each other every morning. She walks with a more lively step, she smiles and appears to be having a good day. Her husband thanked me for giving Becky the hope she needed. She looks for both of us each morning when we exchange hugs and give progress reports. There are many other stories that I plan to share with you each time I write a blog. I want you to have a glimpse of the wonderful people who are desperately trying to get a portion of their lives back. Please remember Becky in your prayers. I have been overwhelmed at the love I feel that flows from me to the others whom I speak to, touch or offer a hug. It is a feeling of connection to God. I now understand the message from Jesus. We are to administer to and show our love and compassion to those in the most unfortunate of circumstances. Sometimes we miss it because we are looking in the wrong places. God's love is found in the most unsuspecting places. I find it daily here and the cancer center. Thanks to all of you who faithfully follow my blog. We thank you for your thoughts and your prayers. More Later....................................Brenda

Radiation day 11

Our New Week-Day Home

We are now settled in our temporary housing in Durham.  Lee will have radiation each day, Monday - Friday through November 4.  We arrived at the Caring House, approximately two miles behind Duke Hospital and it connects to the beautiful forest area that is part of Duke University campus.  It is quite lovely here.  This is a residential area with lovely homes and the drive to and from the oncology clinic is through the beautiful wooded area with very little traffic; sort of like being in Lincolnton for a brief time.  To see where we are and take a little tour of our temporary residence, go to caringhouse.org.

The house is filled with residents who are receiving treatment for cancer.  Currently, the 18 bedrooms are full.  There are always two beds; one for the person receiving treatment and for a caregiver.  It is quite accommodating with all the essentials, and comfortable beds.  Although small, we do have a T.V. privacy and bath.  I believe the limited space is to allow for more use of the other areas available to all. 

The main meeting room is huge with vaulted ceilings.  It is decorated is soothing earth tones.  The many sofas are either leather or comfortable fabric.  There are numerous comfortable chairs, tables with lamps for reading.  A huge fireplace with gas logs is situated between two large glass windows that reach floor to ceiling and look out over a lovely "Angel garden".  There are beautiful plants, a fountain, stone path and it is surrounded with easy access doors from two sides.  Residents are invited to work in the garden if they so choose.  Also in the meeting room in  the far corner is a baby grand piano. (I tried to play it this morning, but it really needs tuning!)  Situated in an alcove behind the piano is an area with a large round table and comfortable chairs around it for those who wish to play games, cards, puzzles or just gather together.  A huge flat-screened T V  is directly on a large wall at the opposite and entry end of this room.  We have discovered that it is rarely on.  Most residents prefer games, or reading or just quiet times.

Across from the meeting room is a long hallway that leads to private rooms and as you look directly ahead and across from the meeting room, there is a wonderful, large screened porch filled with wooden rockers, wicker comfort rockers and tables.  This overlooks another garden with running water and small pool.  I

In addition, there is a library with excellent selection of books and computer access.  The large kitchen is divided into Three kitchens!  Four large refrigerator/freezers and large working areas.  It accommodates all the families and we are all assigned frig. and pantry.

The large dining hall will accommodate at least 50 persons.  This is the only place food is allowed unless there are unusual circumstances for clients who return from procedures too sick to come to the table.  That was Lee's case yesterday.  He was not sick, just too hung-over from anesthesia to walk down the long hallway.  He had his dinner on a tray in our room while I joined the others in the dining hall.  Last night was pot-luck, and everyone brought food to the kitchen for a spaghetti supper.  It was delicious!  Tonight, the hospital is sending supper over.

Wednesday is always "pot-luck" followed by a prayer meeting in the meeting room with local volunteer pastors.  Last night was presented by a lady from one of the Lutheran churches.  Lee and I were so very tired that we both went to bed at 7:00.  We missed the meeting at 7:00.  Hopefully we will be able to attend next week.

On Tuesday, we both had a massage (free each Tuesday afternoon)!!  I have had a "crick" in my neck for the past week, and now after the massage it is gone!  It was very relaxing, and in addition I was taught some preventable exercises!

So..................there you have it.  A wonderful home away from home, thanks to those who support the Caring House, our stay here is wonderful.

We are both so glad to finally be receiving treatment for all Lee's skin cancers.  After the meeting with the oncologist yesterday, his outlook is beginning to look more favorable.  By the way, Lee has a twin brother here!  Yesterday we met Bob and his wife from Fayetteville.  His head looks like Lee's, only a bit more graft!  They had much to talk about.  Same surgeons, same time-frame, etc.  Bob is NOT on anti-rejection meds!  His just came out of NOWHERE.  He is a young 65 year-old, retired military person.  He was in the Vietnam war way back when.

Thank you for following our blog, and most of ALL for your commitment to prayer....

More Later..................................Brenda

UPDATE

I have started a couple of blogs during the past month or so on my I-Pad, only to discover that interference ( travel, hospital, doctor's office, text, etc) distracts me from writing.  If you are still following my blog, I apologize again.

A big thank-you to our good friend, Paulette Lael for keeping up with us and giving the message to all of you to follow my blog.  We have been on the fast track since March.  There have been multiple complications for Lee that required the many trips to Durham and back.  To date, Lee is doing fantastic in spite of all the cancer on his head, face and other parts, the heart out of arrhythmia from time to time, and the in and outs of mild rejection.  He never ceases to amaze all who know him at his wonder resilience and his positive attitude.

We were able to work in a full week at the beach last week.  We left from Durham after a preliminary procedure in oncology on Tuesday.  We returned this past Monday, again to Durham for a final post-op visit with the micro-vascular graft surgeon.  Our time at the beach was wonderful in spite of overcast days, coolness and spots of rain.  We were able to visit with many of our OI friends, enjoy a spontaneous fish fry with them, and finish the week-end with a visit from our grand daughter, Michaela from UNCW.  When we returned her to the campus on Sunday afternoon, we dropped in on our good friends (lung-transplant) who reside in Wilmington.  All in all, it was a refreshing and invigorating retreat.

So good that we could do that because after we are here for two weeks, we will leave once again for Durham.  Our schedule for the weeks beginning on October 13 will be for five full days in Durham for Lee's daily Radiation Therapy.  Plans now are to Leave Vale each Monday a.m., overnights in Durham M-Th, return home for F-S-S.  Hopefully it will be no more than four weeks; however, they asked us to plan for residence til December 4, just in case he needs more!  If we are in Durham during Thanksgiving, we have been invited to My brother's house for that day. 

Traditionally, Thanksgiving has been here, usually @ high noon with time for visiting, watching the games, walking and ending with everyone helping to remove Fall décor and bring out some of Christmas, especially the trees!  I am hoping we can do that again this year!

I have been Christmas shopping like a mad woman!  So far, have almost finished most of it and hope to get all wrapping accomplished before we leave!