Things were going along just great, and then....

So, this is gonna be a downer, but I’ve been told that journaling helps put things in perspective and, for some reason, I feel moved  to write about when my life changed, even though that isn’t when my health problems began.  In 2000, with our grown son and daughter out on their own,  and our little ‘surprise’ daughter ready for preschool, my husband and I decided to move.  We didn’t move far…just 25 miles to the town where my husband worked.  From the time we married, I had worked as a medical office manager (a job I loved) in a city 55 miles away, and we lived in a small town in between.  After 24 years of commuting, we were ready for a change.  Right away, we found a nice house and I landed a job as health care coordinator at my husband’s place of employment.  We were very happy.  The one sad note that intruded was my mom had recently lost her 11-year battle with breast cancer. I missed her terribly and wished she could see our new home.  One day, while I was working in my new garden and little 4-year-old ‘S’ was playing on her new swing set, she came skipping over to me and whispered confidentially, “Mom, I was swinging very, very quiet, and I heard Grandma talk to me.  She told me she loved me and she said to tell you that she loves you, too?”  I was astounded, but S just turned and skipped back to her swing set.
Well, life went on, S started school, and D and I felt blessed and contented.  Then I received an employment offer from the local hospital. The hospital was expanding, making the change to electronic records and a new department for centralized scheduling was being organized.  They were impressed with what I had accomplished at my present position and offered me an administrative position with a higher salary.  I really agonized over the decision.  I loved my job and the people I worked with, but I also was intrigued by this new challenge.  I hate to admit that greed tipped the scales…I wanted the money, so I accepted the position. It proved to be a much bigger challenge than anticipated.  As a super user for the new software system, I made the necessary data entries, developed policies and procedures, and trained the admissions staff.  However, no money had been appropriated to upgrade the analog phone system which is required for centralized scheduling.  Because of the lack of funding and reluctance of the physicians to change their routine, the centralized scheduling concept was abandoned and I was let go (after I had customized the computer system and trained the staff, of course).  I felt used.
At about that time, my husband retired.  He intended to go back to work part time, but first he had a routine screening colonoscopy.  During that procedure, he suffered a perforation and had to have a colon resection and temporary colostomy.  A few months later, the surgeon attempted to reverse the colostomy and failed.  While recovering in the hospital, D sneezed, the staples popped, and his innards came out through the incision.  He had to have another surgery to put them back in, but the wound was not closed for fear of infection.  He came home with an open wound from mid-chest to low abdomen that had to be cleaned and packed twice daily.  So, losing my job and collecting unemployment was actually a blessing in disguise as it allowed me to stay home to take care of D.
Eventually, after several months, D’s wound healed, his colostomy was reversed, and an accountant friend asked if I would be interested in a temporary position.  The owner of a small manufacturing company had fallen ill and his business was in disarray.  He had been through five office managers in four years and someone was needed to balance the books.  I accepted the position and after correcting the books, I was asked to stay on as bookkeeper.  This job again involved a 25-mile commute, but the pay was good and I came to really enjoy it.  Then I found the breast lump.  
I underwent partial mastectomy and sentinel lymph node resection, and began chemotherapy with the local oncologist.  After a couple treatments, I lost confidence in the oncologist. At the urging of a friend whose husband treats at CTCA and my family, I finished chemo and radiation at the Cancer Treatment Centers of America in Tulsa, OK.  I was there for nine weeks.  For the first time in this ordeal, I was treated with the same respect, caring, and compassion that I had extended to the patients I worked with in the past.    My employer did not offer sick leave, but I was able to do payroll and other tasks remotely by computer.   My time at the Cancer Treatment Center was a tranquil oasis during a very rough time. 
I returned from treatment and went back to work.  My employer was very accommodating – especially after I developed the blood clot and accompanying symptoms.  The office was rearranged so I needn’t bend over and I was allowed to work fewer hours.   I was very much aware of the cognitive changes that accompany chemotherapy.  Concentration was difficult and tasks took much longer to complete.  However, since I had set up the books and upgraded the accounting system myself, I was able to continue to work effectively.    The following year,  the business owner died.  New owners took over and brought in their own office staff.  Again, I found myself having to rely on unemployment insurance.
Then came the nightmare.  Our happy little 4-year-old girl had grown into a beautiful but extremely shy teenager.  In January of 2014, she experienced a psychotic break.  It was awful.  During hospitalization and subsequent treatment, we learned that while I was away for cancer treatment, she had begun using marijuana to deal with the stress and continued using on the sly for two years.  My husband and I had seen no warning signs.  Up until the psychotic break, she had seemed to be coming out of her shell and becoming a little more independent.  Her grades continued to be very good.  I thought she was coping well, but perhaps I was just too preoccupied.  We learned that prolonged, frequent use of marijuana during teen years while the brain is still developing is known to cause psychosis.   She completed inpatient treatment for addiction and experienced significant growth, but remains in denial – even with continued counseling.  I am so worried and plagued by guilt.
I thought my next job would be a dream. Because of my continuing symptoms, I realized that I could no longer handle any physical exertion, - even driving to and from work would be challenging.   I got a job working from home as a medical biller.  I thought this would be perfect.  It had been a few years since I worked in the medical field, but I have always been a quick learner and my past experience would be extremely valuable.  I neglected to consider the decline in my cognitive abilities.  To my mortification, I had to be shown how to do things and then reminded multiple times.  Try as I might, I could not work at an acceptable pace.  I lasted less than three months and left in disgrace.
Enter, my dad.  He was a hard-working farmer, as honest as the day is long, and the most courteous and romantic man I have ever known.  My sister and I often say the worst thing our dad ever did was allow us to grow up believing all men were like him—what a rude awakening we had!  My folks had been blissfully married for 51 years.  Everyone who knew them looked on their marriage as the ideal.  Of course, they had their ups and downs, but through it all they remained loving and so obviously in love.  We were very worried about Dad when we lost Mom, but after a period of intense mourning, he decided to join the living again and started going to senior dances where he met his second love.   All through their eighties, they went to dances twice a week and danced every dance.  But then the years of working in grain dust caught up with him and he developed COPD.  His health failed dramatically.  About the time I lost my last job, we came to the conclusion that Dad should no longer live alone.  My husband asked him to move in with us.  We moved all our stuff out of the living room and our bedroom and decorated the place with his furniture and pictures, IH tractors, Ford trucks, and the cast iron toys from his childhood.  We parked a camper in the driveway to sleep in while we worked on fixing up a bedroom for D and me in the basement.  I was happy.  At first, Daddy did not require a whole lot of care - just meals and reminders to take his medications.  I was able to do that, as well as take him to doctor and social visits.  We worked on scrapbooks, played cards and watched lots of Westerns.  Even when he required more assistance, we were able to work things out, e.g., I would help him out of his chair, and then I would have to sit a minute to catch my breath.  He was always patient.  Our extended family and eventually Hospice were there when extra help was needed.  All in all, it was a good time.  Daddy was surrounded by love and care, and I felt useful.
Daddy passed away in March.  It was hard, but I was comforted knowing that I had done all I could and he never had to live in a nursing home.  After the funeral, I was busy getting ready for S’s high school graduation and college orientation.  I thought by now I would have Daddy’s things packed up and distributed and I would have my own things back in my own rooms, but I’ve just been too exhausted and overwhelmed.  I decided it is time to see if anything can be done to improve my condition.  I consulted two vascular surgeons regarding the blood clot and superior vena cava syndrome.  They both said I had developed sufficient collateral veins to take over the function of the vena cava, so I must be fine.  My PCP sent me to a cardiologist, a pulmonologist, and a sleep specialist.  I was started with a CPAP for mild sleep apnea, but my heart and lung tests were within normal limits, so again, I must be fine.  It is so frustrating to have doctor after doctor say those words only to come home and be barely able to function.  In desperation, I turned to the internet and found most of my symptoms classified under CFS, which is how I ended up here.  I contacted my care team at CTCA today to see if they knew of any correlation between chemo and CFS.  They asked me to move up my follow-up appointment and they will consult other physicians and hopefully find a diagnosis and a treatment plan.  D and I will make the 14-hour drive to Tulsa before the end of the month.  I understand from the information on this site that there is no known cure or even a proven treatment, but I have hope that I will find some help there. 
It has taken me several days to write this, but I have found it to be surprisingly cathartic.  It leaves me feeling that, in spite of my challenges, I am who and where I am supposed to be.  I am blessed to have had much happiness in my life.  I must remember the good times and draw strength from them as I face new challenges.