Sunday/Funday...not especially...but productive....
I have spent much of the day washing slipcovers and IRONING them OMG...in preparation for my family room just off the kitchen which has been painted and waiting for coat 2 on one wall and baseboard paint all around.
 Then we start on the kitchen which also needs a color change and some new back splash tile behind the range and sink area.
 It will create a real face lift to the room and since i spend so much time in here it is worth the effort and give me a feeling of moving forward in my life.
 I am also starting Pulmonary Rehab on Tuesday and am looking forward to all the positive changes it may promise....

Friday again...it's been a Cave kind of week ie one where I am happy when it is raining to help justify my isolation....doing bits and pieces of house work...got on a cooking tear the other day so that amused me.
I went to BJ's and that was exhausting,,,all that walking was good for me but left me tired.
Bad news from Sue,,,she has breast cancer and is starting Chemo today...my heart is with her and my brother...she has always been there for me.
 I need to pick up my prescriptions today so that is my big chore...fighting the traffic to Ocean View and back on a Friday in August...
 I have been reading a lot so my concentration is improving and I am getting the hang of the portable oxygen..so going out isn't as much of an ordeal...especially if there is a cart to hold on to.

Busy week last week..The Boys came to visit...ie  Zak, Gabe and Gustav...It was a treat to see them..they gave me a heads up a few weeks ago so I was somewhat prepared.
 All went well except that a had a fall at my Brothers house in Annapolis which left me with a fat lip and a chipped tooth.
 My balance is not good and lugging oxygen along with my purse is a burden. I confess I had some wine but it was such a fun evening until the crash.
 I am OK actually ...I still have a PT coming this week and we have been working on balance and it was my own fault to not have my cane with me as he suggested I use outside.
  I saw my Pulmonologist on Monday and he was pleased with the results of the procedure that bonded the pleural sac to my lung. My lower right lobe is not functional at all...which is still better than the surgery option which would have take out the middle lobe as well.
 I am breathing better but am on O2 24-7...
 I met up with some friends from High School yesterday for lunch..., my boyfriend Paul, his now wife Patty and Billy Regner.
 I was disappointed that Mary Ellen didn't show up :-(
 She was my crazy girlfriend in the 'Hood...

Saturday morning....I know better than to leave the house today due to traffic.
Check out/in Day...primo vacation weeks....
 Saw the surgeon yesterday and had the wire stitches removed from the chest tubes ...ouch.
Looking forward to a shower today.

It is July 23. I have been home from the hospital for 11 days.
Long story short, I went in as an outpatient for another Thoracentesis which is the procedure that drains the fluid from the pleural sac surrounding the lung. This was the 3rd time I've needed since I returned to DE in November,
Once again the Pulmonologist drained  1 1/2  liters. As normal procedure requires I am given a quick chest X Ray to determine there is no damage to the lung.
 Well, the lung had collapsed and as a precaution I was kept overnight.I was also referred to a surgeon to perform another procedure, under sedation, called a Pleurodesis which involves placing a powdery substance into the pleural space causing the space to close.
 I then had 2 chest tubes placed on my right side to drain any remaining fluid which took several days.
I was completely bed confined until they were finally removed,
 The pain was controlled and I slept a lot.
The hospital procedure was the usual chaos...portable Xray at 6 AM followed by numerous visits by the hospitalist, respiratory therapy, breakfast with NO REAL COFFEE.....etc etc etc.
 I had a spin with the PT who is actually retired from Beebe but I knew him from Milford Rehab and Out patient therapy when i was recovering from knee surgery.
 Peg and Dot and Dot's sister came to visit several times a well a giving me a ride home.
I am feeling better and stronger...have a nurse coming in 2X for vitals and PT.

Easter weekend...
Dave and Sue invited me to Annapolis to spend the weekend but I declined.
 I am feeling anxious and more afraid than I've ever felt in my life.
 I realize that this COPD is an illness as serious as Cancer and as, if not more debilitating.
 I ran some errands before my luncheon last week and I could barely make it into the restaurant with my shortness of breath and had to lean on the table to even speak...
 I now have a nebulizer, 2  inhalers and a rescue inhaler,,they all have side effects..
Going for a PT/CT scan on Monday...Pulmonary Function  test on  Thursday.....XXX

What a rough week I have had.....actually this entire month has been stressful and disturbing starting with Barry's death. Even though it was anticipated, it still rocked my world...tons of memories flooding back into my head....
 Then there is the fiasco of selling the house in Baltimore. I sent a check to the contractor REGISTERED MAIL through the USPS and it somehow got lost and took over 10 days to be delivered and held up the settlement date.
 I had to drive to Kent Island this week to cash in some CD's at First National Bank bank which had bought out Baltimore Co S&L as well as the Annapolis Bank.
My bank questioned the deposit even though I had 2 cashiers checks ....
 Since the contractor would not sign off on the repairs, I tried to wire transfer funds into his bank but the routing # was not accepted by my bank so I had to make a cash withdraw and make a deposit into his bank which had a nearby branch.
 Meanwhile, I was trying to get some settlement papers notarized at my bank and the notary noticed that my Drivers license had expired on the 5th, my Birthday. SOOO....I came home to get my passport and since I knew she was leaving for an hour lunch, I decided to drive up to Georgetown and renew my license...which I did.
So I got the papers notarized and rather than entrust the USPO again, I Fed Exed them to the settlement officer which cost me $32....
It's required a lot of push ups on my part and every step has been an ordeal...and costly $$$
 Then it occurred to me that I have been losing all the constants in my life....Jim, my own health , Barry and now our old home which we bought in 1971.
.I cannot face any more drama at this point..I am feeling so fragile and sad..totally sapped of joy and full of fear...I've never felt so alone in my life ....

What a long strange trip it has been...
 Barry died 2 weeks ago..marking the end of an era in my life. ....it was a surreal experience to spend time with his family and old friends after so many years of estrangement..
 I have actually  been feeling somewhat melancholy lately since Gabe and I did the STORY CORP interview in January....and all those memories came flooding into me at the funeral home
 My heart is broken again. I have lost the 2 most significant men in my life besides my Dad .and my Sons have lost their Father ...
  In my nostalgia I am remembering a robust Barry, defiant and rough.....we were still children when we met....even though we thought we knew everything  there was to know..He was 21 and I was 18 when we  got married. Neither of us had a direction or any encouragement to advance and i guess we were just grateful that we found one another at that particular moment.
We loved each other.... wasn't that enough? Also my best friend recently had "had" to get married and it seemed to be the way to go in my romantic mind.
Barry had that James Dean attitude and look about him...at one point we had 2 motorcycles and a car and I had not yet learned how to drive,
When he finally got a decent paying job at Coca Cola through my BF's father he somehow managed  mess that up....walking out without notice because the Union failed to pass....only thinking of himself and not as  a married man..
 Yet he was the same person who put love notes in my lunch when he packed it...and came and picked me up I had finished my shift at BIG BOY restaurant to take me to see DR ZHIVAGO even though he had just left the theater.....a 4 hour movie....and was always showing me new places/things I had never experienced.
 When we were "evicted" from our apartment on Mary Ave  and relocated in Hillendale we were inundated with roaches...he put on a faux fur hat I had...looked like something  that Papa John Phillips had worn,  and declared war on the roaches....this was of course around the time of Sgt Pepper....
We had a lot of fun , saw a lot of movies , met some great people and stayed together for 14 years but after the kids arrived I was looking for more stability and responsibility ....I continued to grow and Barry was just stuck or stoned in his own reality of life.
 Pot was good for him because it made him mellow...alcohol made him abusive and sometimes violent..He had a good ear for music and really missed his calling there.
 He lived like a gypsy after we split up ... pre cell phones and no permanent address.
 I needed to contact him when Zak became ill,so I drove up and down Broadway looking for him. Luckily the first man I stopped and asked told me that he was in his apartment. I warily followed him into the building thinking i was going to be attacked, raped and left for dead...but there was Barry in the living room . The man was his friend Bruce, a former psychiatric nurse (and patient)
 From that point on we kept in touch,
  It was truly a blessing when Barry met Sheryl. He definitely need someone in his life to love  and be be loved by. She became a part of our family as well and it was painful and sad when she became ill and died.
 Sheryl and Barry came to my Wedding to Jim....he spent time here in my house after she was gone...Jim and he were friends and now they are both gone...../

Countdown to moving back home....finally heard from power wash/cleaning company so he will have all of that done when I get there, I have also have scheduled Mediacom and several DR Appts. and had the heat checked.
 Now I can concentrate on getting some  much needed painting done on the inside.
 This is quite a challenge for me , moving back, but clearly the best option at this juncture'
. I wish I could click my ruby slippers together and just be there. cats too!
 I am also beginning to think about things I will miss about Georgia.
 Obviously my family and watching my Grandchildren grow is a major loss but I need to move on and am not ready to commit to a lease here with every thing so undone at home.
 There is so much to tend to...sell, dispose of , auction...
 Other things I will miss here are the FREE services of the Cancer Wellness Center and some of the great people I have met there...great healthy food, other survivors, mindfulness training etc.
 I have gotten many welcomed hugs , which I was sorely missing, but once I get back I can reconnect with my support group in DE and maybe find some other outlets at Beebe.
 I won't miss the traffic..had such a series of mishaps driving it was crazy. I think much of it was caused by stress and uncertainty.
 I will miss Debbie , my fellow foodie and martini enabler.I will miss this beautiful fall and dining alfresco  on the porch....the generally moderate temperatures. the plethora of events and activities every weekend.
 I wake up in the morning with anxiety but I generally blow the negative thoughts out of my head by focusing on breathing in and out. That is nothing new because when Jim was so sick I never knew what I was going to face when I came down stairs but those days are over....

So much has happened since my last post...I am in remission from the CANCER and am now , I hope, Strong enough to move back home.
 I realize that i have totally over extended my stay here and am now interfering in the family goals.
 I wish I was ready to move here , in m,y own place, but I have so many unresolved issues back there.
I am seeking the support from the group I have made contact with in the past and letting GO of the negative aspects....
 Jim had some very fine friends from his past...I have some too...
 I think about Jim every day...remembering him as he was and not what "WE" became.
 He would be so excited now about the ORIOLES..

It is Friday, the 7th which would have been the last radiation, but due to the ice storm, I have one to make up on Monday...then the PT test to see what the results are.

 Aside from feeling chronically tired, not hungry and just plain blah most of the time, i guess I am doing OK.

 The nagging cough is my worst symptom and i can't seen to shake it no matter what.  It is so deep that it causes incontinence which in turn requires attention, often in the middle of the night

. Apparently it is not lung related but bronchial as the lungs are clear and the oncologists are pleased with my progress.

 Some days i just feel like lying on the floor for hours, which I do not do because I would still be there.

 I am also having problems with my left leg from the hip down . Some days it really is painful, but then again it is the one with all the hardware.

 Occasionally I get a yen for something but by the time I get around to it, it has passed.

 The 2 best things I've had this week are 2 chocolate milkshakes...very smooth..

 The swallowing thing has come back which is very uncomfortable.  feel like I have a pill stuck in my throat because I forgot the magic mouthwash..

Meals are not regularly prepared here so there is lots of inconsistency time wise etc. 

Now that Trin is allergic to seafood, there is nothing the 3 of us can eat together. Gabe plugs along with his repertoire but some of the items I have trouble eating due to texture or spice.

Basically, i guess I am a mess after all.

Must get ready for appt. Cleaning people coming today so I want to clear out...

Well I have completed my 3rd full week of treatment and aside from fatigue and a little stomach rumbling I feel fine.

 I had my hair cut very short last week in anticipation of losing it but aside from feeling very dry it seems to be hanging on.

 Things at the house have been surprisingly calm since the snow and ice closings have ended.

 The biggest issues are over the kitchen as Gabe runs a tight ship and shops daily and I am a stocker of groceries and plan ahead.

 What I like about being here...my room is very comfortable as is my bed. I love to hear the trains in the night. It reminds me of the coal train going to the Indian River Plant.

 I like that the grocery stores sell wine unlike MD and DE. I like the friendliness of the store staff. 

 Now that I have my car I feel free to roam a little as long as I avoid rush hour. The traffic patterns here are very complex and you never know when the lane you are traveling in will change.

 What I miss are my cats, especially Beau and Mouse. I am still hoping to find a way to get Beau down here.

It is also great to have Debbie and Paula as friends nearby. I haven't been very sociable lately but it is due to my fear of the side effects suddenly kicking in.

I've also been unable to plan anything in the Wellness center due to my treatment schedule but that may change this week.

 I feel as though I am living in a state of suspended animation, never knowing what is going to happen next. The sad thing is that I have been in this way for the past few years with Jim's illness and fearing what the next day would present. 

 All i can do is take it one day at a time....

The Cancer diaries

So it is Monday, January 13 and I am back in Atlanta awaiting for the next step. Actually, i am waiting to hear from the radiologist about doing a biopsy before Thursday when i see the oncologist again.
 It is quiet here at the house which is not a bad thing. i am watching my regular daytime shows on TV, I'v had a meal, coffee so I am satisfied in that area. I am just uneasy and antsy..
 This waiting is the killer. Knowing that I have no control over what is to happen is a bitch. The prognosis I had on Friday was not what i was expecting or lead to believe by the previous players. This is much more complicated...definitely involves Chemo, whether solely or prior to surgery..I am ANGRY, SCARED and PISSED, and I miss being home...
 I am really mad with Jim for leaving me like this..how long have I had this? I lost my life while I was busy caring for him and his needs...I may have noticed something sooner..instead of blaming it on stress and asthma...I did the same for Betty, I stayed home an cared for her while Jim lived his life as normally as possible...She is gone too...I was the chosen one to care for her and her little Dog while her granddaughters rarely saw her...But this is the Sanders way, I was told, we care for each other... that is so out of line with the reality..which is the opposite. I can show you on one hand the # of times during Betty's demise.
 So now I just wait for more news and then maybe I can think about the future.
I am truly blessed and grateful for Gabe and Trin coming to my rescue...also to Zak and Tess for their encouragement and support.

Dream

I had a weird dream last night because I was restless and the Trazadone didn't seem to be doing the job.
I was shopping a a huge grocery store, something like BJ's and Jim was alive...not just alive but his former self, picking up stuff that we didn't need just because it was there. I discouraged him because we didn't need it and somehow in my mind I knew that he was gone and I didn't want any more belongings to dispose of...
It was also bizarre that Tommy Rutledge was working in a deli there and I was ordering 1/4 lbs of this and that but there was another deli in the back of the store where Jim was ordering lbs of everything.
He was shopping with Martha who was there with Phyllis whom I didn't see.Not surprised given the last message I received from them.
I realize this was meaningful because in my dream I was dealing with my lost relationships with his friends even though in reality I am still struggling.
It was also strange that yesterday while I was on the line with US Air, a call tried to come through from Joell Bacchieri.....whats up with that??

Post Atlanta post

Arrived home last night sans my big suitcase which didn't make it to the plane in time to get to Salisbury.
I barely made it myself even riding the cart which I had to change once because the departure gate was once again at the opposite side of the airport and on another level.
The cats were happy to see me and I had Mouse and Beau as my bed buddies once again.Caught a glimpse of Bitsy ( I think) but I still haven't seen her this morning even though the food is out.
I have contacted Beebe and they are sending the CD's to Millsboro for me to pick up on Monday.
Next I am calling the airline about my flight back. Then I need to get my prescriptions re ordered but I have to wait for my bag to be delivered.
The holiday was great despite all the "moving parts" as Gabe calls them.
It was comforting to be with my family during the consultation with the oncologist even though it was a bit overwhelming for him. He was quite clear with his prognosis although the Thoracic surgeon will be the one to decide.
I slept very well in Gustav's little bed and had fun with them until the "real" kids showed up. None the less, everyone had their own space so we could retreat when necessary. It was also good to see Paula and have a little time with her. We are both in crisis mode and life altering situations.
So, how do I feel about everything? I am very tired but my mind races and I feel like I need to make lists so I don't forget anything.
I wish I had a better concept of recovery time so I know how long I will be gone.
After the last few years dealing with Jim's malaise I am just SOOO tired of making decisions and I don't like to feel forced to make these sudden changes ie moving out of my home of 12 years....

I feel positive about having the biopsy done because the lesion seems to be small enough that even if it is malignant it will not be life threatening..
Preparing for Christmas has been a serious concern
At this point i am certainly leaning to the Atlanta option but I cannot make plans until I get these results..

Scheduled for a "Pet Scan" tomorrow with contrast to determine whether the mass is cancerous. Needless to say I am terrified but trying to remain objective.
I may have to undergo another Bronchostony on Friday but that will be determined by the results.
Yes, this time it really is all about me....
I finally took a shower and changed my clothes...must go to store for cat food and litter..and WINE.....
Then I am watching Homeland on demand and going to be early...have to be in Rehoboth by 7 AM..

OK, the chest exray showed that the mass was still there so i had a Bronschotomy done on Wednesday, the day before Thanksgiving.
Fortunately for me , Gabe and Trin were in the vacinity attending a Memorial service for Ben and Barbara who died in a tragedy last week but that is another terrible story in our lives
I am so grateful that Gabe was here to drive me to the procedure.
It was performed under sedation a tube up my nose and into my chest. He was able to get some cell samples but not a biopsy because I had a nose bleed and i was choking.
SCARY stuff
Gabe made a seafood quiche for dinner, I spent time with Gustav and Greta on T day and they were able to visit my Bro and SIL as well as John and Molly..
So it is Saturday night..I must be insane because I just roasted an oven stuffer that has been on my freezer for months, hoping to peak Jim's appetite...
My way, I guess of making dinner for the family..maybe taking care of myself or just playing those old tapes..
Thanksgiving has some bitter sweet memories for me..There was the year that Zak and Gabe were forced to have dinner with Von"s family with Pork, mashed potatoes and corn, in the "club room" of his sisters home ..I was so ashamed about that because they were so disapponted
Then there was the Thanksgiving after Lou died, and Mom Mom was in the hospital. Gabe was with Amy then and we had her Father there for dinner..and Betty and Sue and David and kids..very sad...

Wednesday

I think I will get the chest x-ray done today so I will be sure that the Doc gets it by Friday.
I really haven't been out much since last week, but I need to pick up some prescriptions and back up cat food in case he wants to admit me again.
I feel better, more energetic and the coughing is becomming less frequent and more productive so I am taking that as a positive. Also spent a lot of time yesterday looking up infectious diseases like Legionnaires and Mercer and I know I am on the right course with the antibiotics if that proves to be the case
I've been such a couch potato but I don't want to exert myself even though I have a million things I should be doing.
I'm also debating whether or not to go to the luncheon tomorrow but I feel like I really need to get out of the house and see the "Girls".
One can only watch so much Dexter at one time...

The waiting Game

Got through the weekend by hanging out with the kitties and watching Dexter almost non stop. The pulmonologist reviewed the cat scan and didn't think the mass represented cancer, although that has not been ruled out.
He wanted to admit me to the hospital for IV antibiotics but I declined. This is one of the hardest things about being alone. I have to make arrangements for the cats etc. in advance. Instead he agreed to start me on oral antibiotics and I had blood and urine samples taken as an out patient at the hospital. I think he is looking for infectious diseases like Mercer and Legionnaires....God only knows what I have been exposed to this past year in my frequent hospital visits.
I see him again on Friday. Some time this week I need to have another chest x-ray. I also submitted a morning sputum sample to the lab on Saturday and was grateful to find a Beebe Express Lab closer to home that was open.
He expressed emphatically that if I started feeling worse to go to the ER but I am not in any pain or discomfort, just crackly when I breathe. The sputum is generally clear, not thick or discolored. I have no fever, chills or other ailments.
It has occurred to me that the first weekend in May, Jim and I went to our reunion in Baltimore and stayed at the hotel where the dinner was. The Monday after we returned, I became feverish and had a terrible cough and went to see my primary. She prescribed a narcotic cough syrup but was hesitant to give me antibiotics because of my exposure to the C dif that Jim was struggling with. Later in the week when it hadn't improved she did allow me to take a mild antibiotic....it could be that I had something that never fully went away...just sayin'
Sooo...I am trying very hard to stay in the moment and not project into the future. Limboland...