I swore I’d be more consistent with my blogging.
Is not posting at all for two years consistent enough?
I did start a post back in October:
I’m not camping happily. Well, I’m not literally camping, although we are somewhat making do with not enough furniture and living out of boxes as we settle into our new home, so in some ways it feels like camping. And I do have to fend a constant invasion of creatures, two confused cats, our two mature puppies and the wild hound mix puppy Sarah found and brought home to us a couple of months ago. I mean, they think our bed belongs to the pack and have no respect for the human right to the majority of the space. Anything is fair game to hunt and chew: my eye glass case, several pens and mechanical pencils and something I may never identify until I find something important missing…
But the not happy part is true; right now I’m having the pity party of my life. Though I really should be grateful I am alive, and for a person with stage IV breast cancer, that’s a pretty big deal 11 years out from initial diagnoses and 5 years from finding the bone mets. But this past year has just seemed like one crisis piled upon another. At this point, if I prayed, it would be for only one bad thing to happen to us at a time.
I should give you a brief summary of what all went on before and after that feeble attempt at posting, and I really wish I could report that, as of now, everything is coming up roses. But alas, we are still mucking through an ever growing pile of manure and are holding on but by the thorny branches around us. An optimistic person would believe that from those thorny branches will eventually come fragrant, colorful flowers…ah, to be such a person again…oh well.
I’ve tried to be concise, but you all know that isn’t my strong point. Muddle though if you will.
I believe that one of my last posts had to do with the fight I was having with my insurance company, Aetna, who stopped covering any services at UNC Healthcare (my cancer hospital). Well, that fight lasted the entirety of 2011. Though I was able to get my cancer treatments covered, it was a full time job contesting their denials each and every month. I had to make multiple phone calls to their horrible computer phone operator, be passed on to one claims person after another and constantly present my doctor with added paperwork to fill out. Believe me, I have a file there that takes up many
terabytes and more than a few bankers’ boxes! We switched back to BCBS in 2012. Later that year UNC and Aetna resolved their provider issues....
Even better, by the fall of 2012 I had the required two years on disability that enabled me to get Medicare. It was like the pot of gold at the end of the rainbow, a rainbow only out after humongous thunder storms. But this meant that I no longer depended on getting health insurance through Doug’s employer. This meant we could retire.
As Doug's retirement date neared, so did worsening health issues for both of us. My quarterly scans showed some new bone metastatic activity in my pelvis. To prevent any destabilization of my lower back, radiation was suggested. Meanwhile Doug’s AFib got worse and the medications were no longer keeping him in rhythm. The next step was an ablation, a procedure where catheters are inserted into an artery and threaded into his heart. Using heat or extreme cold, the errant electrical signals inside his atrium are pinpointed and destroyed.
So in September of 2012, I had two weeks of radiation at UNC in Chapel Hill and then in October, Doug and I spent three days at CarolinaEast Medical Center in New Bern for his ablation and medication change. We figured that we’d get all this medical stuff over before he officially retired and then we could start having fun. Ah the best laid plans…
Doug stayed in rhythm exactly a week after his ablation, something we were told ahead of time might occur. So we went back up to New Bern, and hour’s drive from Jacksonville, but a better (read: safer) medical center. Doug was once again cardioverted, a procedure where he’s sedated and they shock his heart back into rhythm. A month later he went back into AFib and had to be cardioverted again. In the meantime, my back began to spasm and I was sent to PT and eventually needed steroid injections in my spine. Then, in early January of 2013, Doug went back into AFib while driving home alone from visiting Sarah in Chapel Hill. He was in such discomfort that he had to stop and call EMS. By the time I drove the hour to the motel where he had stopped, the desk clerk had him set up in a room watching TV and drinking juice. He was OK. But I decided that we could no longer live so far away from family and our doctors. We looked at our options and made the decision to move back to Chapel Hill.
We had always planned on staying in Jacksonville for a few years after Doug retired. We'd slowly fix up our house, enjoy our creek, take the kayaks out, visit the beach and the other areas of interest in eastern NC, and, in a few years, move to the Ashville area. As I was preparing my 2012 taxes, I realized that we had clocked 10,000 miles in medical travel alone between the monthly trips to see my oncologist in Chapel Hill and with Doug’s cardiologist being up in New Bern. That reinforced the idea that moving to Chapel Hill was the correct decision.
By March we had signed a contract on a new house that just about to break ground. The layout of the house, all one level with a huge walk up attic for storage, was perfect for us. It was in a newly opened section of a community just south of Chapel Hill called
Briar Chapel. It’s probably the only thing that has gone smoothly for me and Doug in our entire history together! Sidewalks and nature trails, a wonderful park just a few houses away and a pool were all a part of the package. It even had a community garden so we could help grow and pick fresh vegetables; we were going to get healthy! The size of the house and small yard was perfect for the two of us, our two little dogs and, with some carpentry to have litter boxes tucked away under the stairs, our two remaining cats. Unfortunately we had lost our 15 year-old dog Trooper in 2011 and our 20 year-old cat Tipper in 2012.
We figure that in the five months they needed to build the house, we could pack up our Jacksonville house, sell it and close on the new one when the interest rates were still low. Well, we didn’t plan on Doug’s AFib continuing to worsen. In the space of those five months, he had 6 cardioversions including a second ablation procedure (12 total cardioversions since 2009!). His cardiologist decided she needed to refer him to UNC for a new procedure, an ablation that treated both the inside and outside of the heart. One more indication that our move was in the correct direction.
With our timetable to get the house in order sped up, and our health worsening, it was only thanks to our wonderful neighbors, Jean and Jim, that we were able to put it on the market by late November. Their grandson Chris hacked his way through our overgrown flora for a cleaner curb appeal and cleaned and patched up the damage done by our overabundance of fauna (especially dogs and cats who like to pee EVERYWHERE….. ). Their daughter Jodi helped me sort through years of stuff and hold a rather wet but fruitful tag sale, though we still filled several pickup trucks with stuff to take to Goodwill and Habitat’s ReStore. Jim tiled our worn wooden kitchen counter tops and made me kick myself for not doing that sooner, though he had suggested it many times. Jean kept an eye on everything for us after we moved out in October and solved a pesky odor problem we had in the basement. They were the cogs in the wheel of feeling good about moving away, we hated leaving them!
Let me back up a bit. Many months before we decided to move, when I was going through my radiation, I came to the realization that I might become more incapacitate sooner than later. I took some of our savings and asked Henry and Sarah to plan a family trip, something special for the four of us. So in early August, we left rooms full of partially filled boxes and our pets in the loving care of our wonderful friend Beth, and the four of us set sail on a 7-day Carnival cruise! Luckily we didn’t encounter any of the problems that several of the other cruise ships faced. In fact, we had a wonderful time and I am grateful for the memories we made, though the hit to our savings was not particularly helpful with buying a new house and all.
I briefly mentioned in my prologue-ish post that Sarah found a puppy on the highway while driving home to visit us. After an unsuccessful attempt to find her a home, Lucy, a hound-boxer mix, now over fills our small home and our hearts! Oh, and in May were two other events. Sarah, who had previously been famous for never graduating from anything (dropped out of middle school, high school and college), had finally decided it was time for a degree. She graduated from Durham Technical School, a two year community college and earned acceptance at and a scholarship to UNC! That same week my 89 year-old mother fell and broke her hip. May was pretty much a wash with Sarah’s happy event and Mother’s fall and sudden relocation to assisted living, July was a surprise with a new puppy, and August was a terrific family togetherness time. Throughout all this was packing, packing and more packing. We moved in October.
Doug’s UNC procedure was scheduled for early November. Tests were performed and a loop recorder was implanted. This little device allows Doug to place a small transmitter over his chest, hook it up to the telephone line and send 24/7 recordings of his EKG to his cardiologist. Unfortunately, he developed an allergy to the antibiotic that was prescribed prophylactically. The day of the surgery, the doctor took a look at Doug, who by then was covered from head to toe in a horrible, red, itchy rash, and decided to postpone for a few weeks. It was postponed a second time when Doug's rash had not eased up any. A trip to the dermatologist finally cured the rash and in late December Doug was prepped and ready for surgery. Unfortunately, because of all the times he had to stop his blood thinning medications in preparation for the previously planned surgeries, a clot had formed in his heart. Doug was awoken from anesthesia and taken off the table. He was put on Coumadin to dissolve the clot and surgery was put off until it was safe to try again.
When not worrying about the clot breaking off and causing another stroke, we busied ourselves settling into our new home and getting to know Chapel Hill again. We kept waiting until things settled down to reconnect with old friends, we are still waiting …. we need to stop waiting, I don’t think things will settle down for us, at least not for a while. We did sell the house in Jacksonville. After no real activity and painfully paying two mortgages month after month, two offers came in at the end of December and the house closed in February.
February was also when they rescheduled Doug’s surgery. Yes, things seem to pour in on us rather than sprinkle. So the surgery itself seemed to go well. However, there were a lot of balancing acts that Doug had to negotiate. Thin the blood so he doesn’t throw a clot, but not too much that he bleeds out. Keep the blood pressure and fluid volume low so as to not stress his heart but not too low that his kidneys shut down. He didn’t negotiate things too well. He bled into his lungs, his blood pressure dropped and his kidneys shut down. He needed 6 units of blood and two chest tubes to drain his lungs. Two days later he had to go back into surgery to have them repositioned and look for the site of the bleeding. His kidneys eventually kicked back in, but the drop in blood pressure caused him to have another stroke. His speech, which had almost completely returned to normal from his first stroke, was again affected as was his vision and his right side. He spent a week in ICU, and if I thought oncology nurses were wonderful, ICU nurses rock!
As with his first stroke, Doug never lost strength, but coordination and awareness of his right hand seemed to be his biggest issue. When the neurologist came in to see Doug, he reached out to shake her hand. After an awkward moment, he looked down, looked up at her and said “I’m shaking my own hand aren’t I…” Doug spent two weeks in the hospital (including three days when the entire hospital, including myself, were snowed in due to an ice storm) and then another week and a half in rehab getting speech and occupational therapy. The therapists were terrific, the staff caring and the food, though not so much heart healthy, was tasty. However, we were concerned with the competence of the medical staff overseeing Doug’s medication. In fact our Family Doctor actually told them they were incompetent. It was nicely suggested to us that we’d probably be much happier going home, having home health come to the house and letting our own doctor manage Doug. So Doug came back home and I became the full-time caregiver, house manager and critter cleaner-upper-after besides being his loving wife.
You might think that Doug would simply convalesce under my care and we would get back to our started goal of having fun…. Well, you’d be wrong…
Keeping Doug’s INR (how they measure his blood thinning medication’s effectiveness) in the correct zone has always been a challenge, even in the hospital they were constantly having to change his dosage up or down depending on his INR reading. His INR is fairly critical in preventing another stroke and, beginning with our difficulty at the rehab facility and continuing with having it read by the home health nurse, I would often have to call our Family Doctor up at home (luckily he’s also a family friend) to make sure he was getting the proper dose of his blood thinning medication. When it comes to loved ones and their health, I can be a real tiger, and a true pest!
The home health nurse became quite concerned about the swelling in Doug’s legs and his shortness of breath. She called the on-call doctor who felt he should be seen in the clinic the next morning. To get the first available appointment time, I set my alarm to call them as soon as they opened at 7:45 am. Whoever took my call told me that they had no available appointments until the next day. Understand that I was worn out, still reeling from the stress of Doug’s ICU and rehab stay, upset about his stroke and extremely worried about his health. When the best he could do was suggest I call the triage nurse, I completely fell apart. Doug didn’t know what was wrong with me, I couldn’t talk, I just sobbed and cursed. I cursed healthcare no longer run by doctors, but by gatekeepers whose allegiance is not to healing but to the bottom line of time and money. I cursed my role of trying to be a wife to my sick husband and being forced to also be his medical manager. I cursed my need to be responsible for taking care of a new house, selling an old one, doing 100 percent of what had previously been sort of a 60/40 household share (I had been the 40, ok maybe the 35 percent one). I was exhausted both physically and emotionally. I was losing my gasp on the thin rope I had been clinging to and it just felt too hard. I just felt like all I could do was give up. But, just like in a sappy movie, the phone rang and the person I had spoken to before told me that a cancellation opened up an appointment at 11:30. I said we’d be there.
After two hours in the doctor’s office, we were then sent over to the ER where we waited for another six hours. The Family Medicine department felt that a thoracentesis to remove the extra fluid in his chest and IV Lasix would do the trick. They said they would consult with his surgeon just to be sure. There were no rooms available, so he was put in a ward-like admissions floor just down the hall from the surgeon’s clinic. I decided to stop by to see the nurse who had been coordinating his cardiac care. Seems they did not know he was back in the hospital. When the time came and passed from when he was supposed to have the thoracentesis, I asked the nurse to find out what the plan was. A few hours later (we had long ago resigned ourselves to hospital schedules of hurry up and wait long) one of the residents from cardiothoracic surgery came by to tell us they were taking over the case; they did not want a non-surgical service poking a needle into Doug’s chest. I seemed to have pitted one medical department against another… Oops.
Anyway, after four days Doug was again sent home with home health nurses to look in and home-bound PT and speech therapy. Oh, and this time we were giving discharge instructions to watch for swelling and weight gain. The rehab center had neglected to give those instructions to us when we left there. I wonder if it’s just us or do other people get neglected or lost in the healthcare system and how many even know it.
Oh, did I mention that during this time we noticed some stray kittens behind our house? Of course we did! Sarah and I contacted a feral cat rescue and were told the best they could do was catch, spay/neuter and release. When I say “they” it meant “we” though they arranged to get us cages and humane traps and for our vet to do the surgery pro bono. We caught three kittens and their mother. Along with the rest of the east coast, we were experiencing extremely cold weather so Sarah and I decided we needed to keep the cats in our garage for a few days. Well, our little feral kitties were much friendlier than we expected. The rescue lady said we could turn them loose, or find them foster homes which would be much more appropriate for them. Unfortunately, getting foster homes was not an easy thing to do, so for a few weeks we were fostering these kitties along with everything else. My thin rope was unraveling quickly. Finally Sarah was able to get the kitties placed in a no-kill shelter just west of here. Finally something off my plate. Sarah was as helpful as she could be, but was in the middle of midterms and projects herself.
Wow, almost caught up.
In fact when I started writing this I thought I was finally under a bit of blue skies after all the storms. However it was just the eye of the storm. In the middle of the night a couple of weekends ago, Doug woke me up saying his heart was racing, he had an ache in his chest and was having difficulty breathing. We got to the ER around 4 am. After a short wait he was triaged and immediately sent back to the acute care area. He was examined by the ER doc, blood was drawn and x-rays taken. The doc came back and said his lungs had worsened with more fluid in them and his blood tests showed he was in heart failure. She told us that the cardiology resident would be down soon to admit him. After several more long hours, a Family Medicine resident came in and began the process of interviewing Doug once again. I asked about the cardiology department and he told me that it was decided that Family Medicine was a better department to treat him. Now, I have no problems with Family Medicine, in fact I chose a Family Practice for our primary care, however, the last time we went in under Family Medicine, Cardiac Surgery got upset we didn’t come to them. So I asked again if Cardiac Surgery had been consulted. No, it was Cardiac Medicine who referred him back to Family Medicine. So the resident went off to try and contact Cardiac Surgery. After another several hours, Cardiac Surgery came down and decided that a dose of IV Lasix to help him pee out the fluid and a week of increased oral Lasix and he should be fine at home. YES, no admission. So we waited to be discharged. And waited. And waited. I might post at a later time my thoughts on the disorganization inside of an ER, and how there is a false sense of privacy and how many people seem to wait for many hours, IMHO, needlessly. But for now I’ll stick to our saga. We were pretty much cleared to go home around noon. We were finally discharged at 9 pm after there was confusion between ER and Family Medicine as to who had to do the discharge paperwork.
Nope, not a happy camper!
