I'm Back!

I will have to back post for the last three years as some point, but after bring on a clinical trial for 45 months here is my lastest update... 

Once again, I am doing Déjà vu as I sit and wait while the radioactive isotopes course through my veins and are absorbed by my bones to see where my bone metastases are at. I’ve been here since 8 am and have a little over an hour to wait for the actual scan. Then it’s up for labs and then wait until all my results are in and until I can get into see my oncologist. Basically, it’s an all-day affair.

Beyond the fullness of today, there was the waiting for today and wondering what it will show. Will it be nothing new and I just continue as before: the shoe still hanging precariously over my head. Or will it be the news I expect to hear after every scan and have gotten a few times on this journey, that the cancer has found a way to defeat the present treatment and we need to look for something else. One day I know I`ll hear that I`ve exhausted all known treatments and the next step is Hospice. That is when the shoes disappear.

Living under a cloud of shoes is something I don` think I`ll ever get used to. Uncertainty constantly by my side, even though I know no one is ever guaranteed what their future will be, but when you have cancer living in your body, it seems that your guarantee is that you will die sooner than later. Then to add to the mix is another health issue that causes health issues. There are many people dealing with diabetes, having to watch their carbs and balance their proteins and increase their vegetable fiber intake. But with a dairy and gluten intolerance it makes things that much harder. I admit that I am a carb lover, especially when stressed, and I`ve been really stressed lately so I seem to hit a wall whenever I try to figure out what I can eat. Which of course stresses me out even more. With that the higher than good blood sugar in my system may be affecting my heart indicating a need for another scan coming up in a couple of days. All I need with all my worry about cancer killing me is to die of heart disease first!

I was eventually called back for the bone scan. In my head I was going to be assertive as I always think I am but never do and ask them to turn the monitor towards me, so I can see as the bone scan images show up. I didn’t. No big deal, I’d be getting the results in just a couple of hours. As soon as I got positioned and the overhead plate was lowered just a few inches above my nose, my ear started to itch something awful. I mean one of those itches that almost hurts. I tried to focus my attention away from my ear and decided to think about what things in my life I really loved to do. Not who I loved, that was easy, but what activities, what interests. My first thought went to riding my bicycle as a kid. I remember the feeling of freedom, of expertise as I could ride for blocks and blocks without ever touching the handle bars. I remembered the wind in my face, the feeling that I was being held up by the wind, of almost flying. As the ear itch managed a break though I remembered how I never really truly took advantage of my freedom and my expertise. I never ventured far from home, sometimes knowing what boundaries were set by my parents and sometimes just plain feeling like they wouldn’t like it if I went any farther. I don’t know if my fear was of danger or of my parents’ disapproval. I didn’t fear their anger, I feared their disappointment, a much harsher type of punishment in my mind. When I was older and could have really been without boundaries, I didn’t push myself to bring my riding to a higher scale. At that time, it was a challenge to ride a bicycle the 30 miles from town to the beach. The road crosses many miles of marsh with no houses or stopping points along the way. This was way before even the idea of cell phones, just Dick Tracy’s wrist watch phone in the comic books, so getting stuck in the middle of nowhere stopped me from even trying to see if I had the ability to try my legs at extreme biking. Plus, I had my driver’s license by then and if I wanted to go to the beach the car seemed like the better alternative. Practicality verses testing my limits, I think the scales were stacked.

As the itch got more intense I went back to trying to come up with activities I used to love. Fishing was one, but that usually entailed getting up early in the morning which was never my favorite, and cleaning and gutting fish gave me a mild case of the willies. I could do it, but it made my skin crawl as the scales flew off and landed on my bare arms.

Playing in the sand dunes, not a federally protected entity at the time, was a fun time, unless you got a cockspur stuck in your bare foot. I loved the beach, but wasn’t a sun bather, surfer or walker, so not a real passion.

I thought I loved camping, which I had only done at summer camp. Walking to the camp site carrying my big, heavy sleeping bag in my arms (no back packs) was always uncomfortable and I was never any good at peeing in the woods and not getting my shoes or pants a little wet.

Itch itch. College, didn’t I enjoy dorm life? Except for having to share one room with three other girls I barely knew, it was good. I liked that I could just go down the hall and drop in on some friends and visit. Or that hanging out in the hallway at 3 am there was always another person to hang with. I went to a college in the middle of New York City so a campus we didn’t have. I’m sure I would have loved some self-contained community with fun things to do and a busy quad would have been nice. Itch.

Wasn’t there something I was passionate about? Reading, but books ended. Music but it was the lyrics that attracted me as my sense of tone and rhythm were severely lacking. Itch. I loved when my children were babies, but did not suffer lack of sleep well, and they both grew up on me. Itch. itch.

I began to feel the reality of the bone scan and was reliving the past sixteen years of living with cancer. The x-rays, scans and biopsies. Having to hold still on a hard, narrow table, trying to hold my breath and at times feeling like I was going to burst. What would this one show? What will my new new normal be? All questions now swirling around. Been there, done that, but the anxiety never diminishes. Itch itch itch.

Finally done and time to go up to the lab, have my blood drawn and then wait to see the doctor. I was tired, having been there since 8 am and it was now closing in on 2:30 pm. Doug was waiting for me by the lab. I had sent him home this morning, I didn’t need for him to sit around for hours with me. They called my name. I sat in the chair while they prepared to stick a fang-like needle into the port that had been inserted under the skin of my chest nine years ago. Needle inserted, tubes attached and dark red blood collecting in them. Port is de-accessed, band-aide applied, and I’m good to go wait some more.

After a moderate wait, I hear my name being called. I am asked to step on the scale that I “know for sure” lies, or my clothes weight a good nine pounds I declare. Once in a room they prepare to take my Blood Pressure, “use the fat cuff please” I always tell them as the regular cuffs pops off most of the time. I’m an old hat at this! I answer the same questions I get asked every time I come in, name and birthday. Any medication changes since last time? Am I in any pain? On a scale of 1 to 10 how would you rate it? How do I know how to rate it? I feel it but am not jumping out of my skin, four is always an easy answer unless indeed I feel like I am about to jump out of my skin. “Ok, the doctor will be in here soon.”

No, she won’t. The schedule gives her fifteen minutes with each patient. For us old timers who basically just see her to review how we’ve been doing and the results of our latest tests say that we are holding steady and our treatment should also, 15 minutes is enough. However, for anyone just coming in and getting the first confirmation that they indeed have cancer, 15 minutes barely gets them past the shock of hearing those words. From my own experience with this doctor, and I suspect other consciences and caring physicians, they will sit and answer any and all questions the patient has. She will explain the diagnosis thoroughly and go over the treatment options and outcome possibilities. Calmly, openly and caringly she sits while the tears flow, while the many questions are asked and while the enormity of the diagnosis sets in. Only when the patient and friend or family member are ready to go off and contemplate what all they have just heard does she leave the room. Every patient deserves no less. So, it is always the case that she runs behind schedule. Even so, when she enters my room she is fully there, ready to engage in my case and give me her undivided attention. She may have little to report and after the usual exam she wishes me well and she goes off to the next patient. Sometimes, like today she reads the report to me, interprets what the finding are and assures me that this isn’t anything dramatic, but probably time to find a new treatment. There are new clinical trials, reusing old treatments sometime become effective again, even switching to cousin drugs of the ones I had been on might work. Even some counter intuitive uses of hormonal treatments have shown to be effective.

When she asked me what I think I would like to do, I say I’ll do what she thinks is best, “you are the doctor” “yes I am” she repeats in a joking manor “but in reality, it is up to you. I will give you all the facts and make a recommendation, but I need your input.” I’m not sure if that makes me feel empowered, or scared. She printed out some information on the treatments and agree that we needed to see the results of the echo cardiogram I was having later in the week. We’ll meet again next week and decide.

Eight hours after I walked into the hospital that morning we are finally walking to our car. I am exhausted and want nothing more than to go home and veg in front of the TV. I didn’t want to talk to anyone or think about anything.

Of course, that is when my daughter calls to say that there is a problem with her hot water heater and some other issues. I’m so tired, but I’m still a mom and still have the real world in addition to my cancer world. There are still commitments I made to other people to get done, a house that needs attention as well as pets and my beloved husband. With both of us having serious health issues, it is the blind leading the blind most of the time, but we somehow manage to time our crisis, so they don’t seem to fall at the same exact moment, most of the time. Maybe it’s sure will power that the lesser in crisis holds off a full-blown breakdown, or a sort of magical balancing act, but we make it work.

Decisions decisions. Although I do have the support of a great medical team, and a loving husband, in reality I’m in this all alone. Do I opt to stay the same course since I know the devil I live with and hope the progression stays slow and poky. Or do I try something news, not only not knowing how it will work, but dealing with a new routine, new side effects and a new normal. Or, do I just stop it all. That is the choice no one wants me to make, and I know might be the coward’s way out, but with that I can focus on quality of life and have more of an idea how this will run its course. But it’s also a decision I can’t really bounce off anyone as I know that they would be very disappointed by it. I dare not say it to Doug, as he always feels like there is hope and we have an unspoken competition to be the first one to die. This sticks in my head when other noises aren’t distracting it. It messes with my emotions and internal stamina. I look like I’m simply depressed, but there is nothing simple about depression and this situation in particular.

I also have to consider my heart issues. If I have heart health issues they may determine what treatments I am ineligible for anyway. Or maybe my heart symptoms are simply a result of the stress I’m stirring in myself right now with my other issues.

When I return the next week, I am presented with only two treatment options: The old standby Tamoxifen, which I was on right after my mastectomies in 2003, or, they want to put me ON estrogen. Yep, after literally starving my body of any and all estrogen for the past 16 years, they want to put it back into my system. Uh, and how does this work? Well, the analogy is that if you take a starving man and force feed him a whole turkey dinner he will die, possibly explode. My cancer cells, having been starved of estrogen are now so sensitive that even a little estrogen will cause them to die. Hum, well ok. We decided to try the estrogen treatment first and use the Tamoxifen as a backup.

So how is my body reacting to a semi-premenopausal state? The hot flashes have increased. I’ve had aches and pains all over my body but I’m not sure I can blame it on the estrogen, I feel like crap, but maybe that will get better, or not. My blood pressure is better, but my blood sugar has not been, I don’t think it’s time to make a judgement call yet, I want to wait and see how the symptoms progress. But I’m not happy and neither is my body. But none of this stops me from railing on our community social network about the HOAs plan to kill our beavers, or plow down trees to put in a sewer line. I add my two cents of wisdom (worth all of those two cents) about kids acting up in the neighborhood and how adults need to enforce boundaries, so the kids can learn what is and is not appropriate. However, it seems that some parents aren’t up to adulting themselves… I’m not always appreciated for my insights, but that never stops me. Maybe when the shoes have disappeared and before I’m wheeled out feet first will I let go of the yesterdays, forgo the maybes, and give up my hope that I can do some tiny bit of good that will live on after me. This will be my time, time to focuses on those I love the most, time to say my good-byes and “I love you’s,” time to simply be. Unless I am unable to scratch my itches, then I’ll be pissed.

Full circle

Life is interesting in so many ways. 
In the last year my sweet husband has dealt with, and is still recovering from, serious heart issues and a second stroke. I’ve had to face the advancement of my own cancer and a clinical trial with its own tribulations. We have spent many, many hours in hospitals, doctor’s offices, at physical, speech and occupational therapy sessions and recuperating at home.

During all of the above, Sarah and I rescued a mother cat and her three kittens in the middle of an ice storm. We fostered them at our house until they could be placed at Paws4ever , a no-kill shelter. We were happy to learn that all have been adopted! We continue to spoil our own pets as much as we can and they reward us with many hours of entertainment and cuddles.

Doug and I have made a conscious decision to live as well as we can despite our health issues. We’ve enlisted the help of Kim, a health coach, to find ways to enhance our health and everyday life with meditation, movement and a healthier way of eating. Salt has become Doug's nemesis, so we avoid restaurant food and have learned to prepare only fresh and whole foods at home. Doug is becoming the crock pot king! I've learned to chop garlic!

Through Facebook I’ve reconnected with friends from as far back as first grade and just recently my college freshman-year roommate. I don’t know if this is a conscious need to touch base with my younger self and long ago life, or just the magic of the Internet. My last trip to Savannah I was able to spend a wonderful evening visiting with two friends I had not seen in nearly 50 years. Even though a lot of time had passed, and our friendship was originally that of little girls playing together, I really liked the people they had become!

At the same time I’m somewhat disconnected from my own siblings, partly my choice, partly theirs’. Sadly, it’s been a year since I’ve been able to go down to see my mother. Luckily she has a group of wonderful caretakers and is kept busy and active at her assisted living facility causing my once daily phone calls to her to have dwindled drastically, something I do miss. However I continue to relish the close relationship I have with certain cousins and friends.

Yes, life is interesting. 
As I face my uncertain future, I reach out to my past. Not to re-live it, but maybe because it was a much simpler time, something so very attractive in my complicated life today. Maybe it’s to heal the little girl I was with my now adult vantage point and understanding or maybe it’s just to hold on to who I am, to make my life whole and complete the circle of "me."

My pokey little cancer got some get up and go….

I'll just blurt it out: my cancer is spreading and Doug had another complication.

Last month Doug finally seemed recovered enough to go ahead with the second part of his hybrid ablation procedure.  Eight hours on the table it was slow going and he didn’t immediately stay in normal rhythm. Not unusual as his heart had been pushed, pulled and burned. They sent him to CICU with plans to cardiovert him the next day. That procedure went well and his heart was beating in perfect sinus rhythm. They declared him the healthiest patient in CICU and he could be bumped to a normal room if they needed the bed.

I’d been sitting in a waiting room chair for eight hours and sleeping in a hospital recliner at night and I really wanted to go home for the night. However, something kept nagging at me to stay. I really wanted Doug to tell me to go home, which he did until I voiced my nagging feeling, wince he said, “so stay.” I really wanted him to be more on the go home side. I whiffled and waffled but decided to stay the night. Several times I awoke and saw him peacefully sleeping and his heart monitor beating a nice true sinus rhythm. Around 6 am I woke up, saw he was fine and chided myself for thinking I had some premonition, but was glad I stayed anyway. 

A little while later the nurse, Nick, came in and helped Doug manage all his tubes and wires into the bathroom.  At one point he asked Doug if he was OK, which he does get asked a lot in the hospital, and he answered that he was fine. “OK” said Nick with a funny look on his face. Doug comes out of the bathroom and as he’s walking to the bed all of the sudden makes a giant lunge forward landing mostly on the bed and was out like a light. Nick, my hero of all time, dragged him all the way onto the bed, calls a code and slaps leads and heart pad stickers (used instead of the old paddles as seen on TV) on Doug. I back into a corner to give everyone room and slowly his heart monitor starts back to life and Doug opens his eyes. (He later told me that in his mind he never passed out and was shocked to find all these people and machines had appeared out of thin air in his room.)  “You OK Mr. Holstein?” someone asked. “Yes” Doug answered unaware he had scared the shit out of me and everyone else in the room. Now, instead of the nice even sinus rhythm, his heart was doing a waltz like 123, 123 beat. 

Everyone was standing around watching him and watching the monitor trying to figure out what had happened. Then my dear sweet husband looked at me and said “I feel like I’m fading away” and with that his heart monitor flat lined, he contorted, turned blue and became unresponsive. The room filled up with even more people, drugs were given and 23 very long seconds later his heart monitor again started up, this time in a more normal rhythm. Basically, he had hit Ctrl/Alt/Del and rebooted his heart, or at least that was one way to look at it.  At rounds a few hours later it was decided that they would put in a temporary pacemaker and then implant a permanent one on Monday. It wouldn't do anything for his AFib, but would prevent anymore heart reboots....So much for a one or two night stay in the hospital, it became nearly a week in CICU.

We did get a few weeks of recovery and breathing time as Doug’s incision healed and he was under strict restrictions not to lift his left arm above the shoulder so as not to dislodge the wires now embedded (actually screwed) into his heart muscle. No heavy lifting and still no driving. Good thing he has a wonderful wife to do all the hard work…. Well, good thing we hired a wonderful young man, Matt, to come 3 times a week to help! Walking dogs, cleaning littler boxes, moving stuff around the house not something either of us are in shape to do. However I’m still chauffeur to Occupational and Speech therapy four times a week, various weekly doctors and vet appointments, grocery and pharmacy runs and even a trip on his scooter to get it inspected. It was a fun ride, but I do think our riding days are over, so I kind of allowed myself to enjoy it as a goodbye run!

I do admit I’m feeling pretty much alone. Good people offer to help, but I’m so overwhelmed with everything I don’t even know how to tell them what I need. So often I feel like I’m at a breaking point, however, I have been able to get up each morning and put one foot in front of the other, or at least I had been till now.

My recent scans confirmed what they had suspected but couldn’t be sure of from the last couple of scans, the cancer has now spread to my lung and lymph nodes. The good news is I no longer get the Falsodex shots. It was the anti-estrogen I’d been on for the last five years and was given as two injections deep into my behind muscles. And when I said deep, the needle is two inches long and the medicine is really thick. I always pitied the poor nurses who had to inject me, I know their hand hurt trying to push it in and I was beginning to wonder how much more my rear end could take of this stuff! So the new treatment is a daily dose of an aromatase inhibitor, similar to one I took several years ago that did have some unpleasant side effects, along with the monthly injection of bone medicine. At least that is a little injection just under the skin. In addition we'll talk in a couple of months about a clinical trial opening up soon. So I’m at that point, retry old stuff and seek out clinical trials. My doctor put on an optimistic front, she still feels like the cancer is slow moving, but learning that it was in my lung and lymph nodes was a real blow to us.

I started the new medication that night and have spent the last few days wanting nothing more than to crawl in bed and sleep. I can’t say for sure it’s not depression, but it can be a side effect of the medication. I’ve also been really achy in my joints and back which is also a side effect. Now I can try and tolerate feeling like this for a while as my body hopefully gets use to the medication, but long term will definitely be a problem.  

Pokey is better than aggressive, but the end result is the same and I just have more time to know about it. Don't get me wrong, I am grateful for each and every day, but with all we have been dealing with lately, none of this is any fun. I'm OK with the fact that there won't be cure for me, everyone dies of something, and I'm not really looking to do everything to extend my life, I just want to live the life I have left as well as I can. My goal is to die as happy and healthy as I can with my husband at my side holding my hand. I just need to figure out how to do this physically, emotionally and financially....

The Unhappy Camper

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!