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!

Rocky Balboa

I’ve always liked to use metaphors in explaining my life. I think it is something about evoking visual explanations to convey my thoughts more thoroughly. Or I just like to spell things out in vivid descriptions.

Of late, I’ve been feeling rather beaten up by life and I’ve begun to explore my experiences in fighting terms. Now, there are several types of fighters I imagine could relate to my predicament. The first and last on my list I will reject since I don’t believe either fit who I am. They are the two polar opposites: the bully and the Zen master. I’d like to think that I am not a bully, someone who doesn’t care about getting to the top at the expense of others, who might be mean just for sport or picks on others who are weaker or just plain different than themselves. And though I’d love to be like Zen masters who keep things simple and choose to not get involved in conflict or, if it is unavoidable, use love and compassion to disarm the punches that come their way. However, people like that are few and far between and I don’t happen to be one.

I can’t see myself as the heroic aggressor/avenger in life, either. This fighter knows he/she is able to win any fight but uses force only when necessary. I’m not that confident in my abilities nor do I have the same self-control. I don’t think I’m like the early Rocky Balboa, an underdog who takes a beating but in the end, through determined might, wins the match. Even the first Rocky, who got the snot beaten out of him, had such a strong belief in himself and dogged determination, that he kept getting back up, taking the punches and giving back as good as he got. Sure he lost, but like some of the recent political candidates, sometimes coming in second is as good as a win.

Though I also continue to get back up, I can’t attribute it to any sort of determination or belief in my ability. It feels more like I just don’t know any better. Maybe I’m like one of those Bop Bag inflatable punching toys, so weighted at the bottom that I have no choice but to return to upright every time I get knocked down. Maybe I am an optimist believing that each hit will be the last, or perhaps I’m afraid that the beating will be worse if I’m flat on the ground. Maybe I’m responding to the crowd egging me on (remember “Rocky…Rocky… Rocky…”), their encouragement keeping me up on my feet. Or, maybe I’m preparing to run if I can just get out of the ring. All I know is that after each blow, I find myself back up, taking the next blow and the one after that, and the one after that…

In the beginning, each bout made me stronger. My reflexes sharpened as I bounced back or deflected the blows; I developed a sense of self-empowerment and determination not to let this bring me down. It didn’t matter if I won or not, I was able to get up and go one more round, fight one more battle, jump one more hurdle. Many of my earlier posts might reflect that attitude. However, as time has gone by with little time between bouts, my strength is diminishing, my reflexes slowing and my determination wavering. I don’t want to deal with any more struggles. I don’t want to have to cope with the emotional, physical, and anticipated pain that doesn’t ease up. I want to walk out of the ring, win or lose and get on with my life. I don’t wish for death, but I don’t fear it either.

I’ve had breathers, times when I’m outside the ring and things are good and life is treating me well. However, it feels to me that when I find myself back on the mat, life comes out at me with a renewed vengeance after its own bit of respite. I remember taking Aikido many years ago and the idea is to use your opponent’s own force against him, side stepping his advances so that his forward motion tumbles him to the floor. In this manner, you can defeat an opponent much bigger and stronger than yourself. There just doesn’t seem to be a way to side step insurance companies, health problems, personal difficulties, financial concerns and the other issues that face me on the mat.

I’m sure this sounds much worse than it probably is; I *might* I have a small flare for the dramatic . But then again, what I am trying to explaining is not the facts of the matter, but my feelings. I’m also sure that I am not the only one dealing with the physical pains and disabilities of a major illness while trying to fight the insurance and medical establishments. There are many people out there who have major upheavals in their lives, who face financial difficulties and declining health or death of immediate loved ones. I’m not the only one who worries about or grieves for aging and dying pets, must try to live with a restricted diet, both for weight and food sensitivities and spend much of their time going to doctor’s appointments. Everyone deals with the ‘must do’s of everyday life that can be so annoying and frustrating it makes you want to scream. I guess what has me down is that so much of this comes at me all together at one time or one right after the other. I am getting tired.

Oh but that heavy weight keeps my feet on the ground and flips me back up, once again ready to fight the prevailing wind (very mixed metaphor, but this is my blog and I can mix metaphors if I want to!). I can only hope that I can continue to bend and not break. Or, if I am lucky, I can face the wind, and with my eyes closed, pretend I am on the deck of sturdy and stable ship as it sails on blue waters towards fair winds and calm seas

Installment 2 – Confessions of a Squeaky Wheel

In November of last year, Doug’s employer offered a choice of insurance plans. I did an extensive review of our medical expensive, going on the assumption that I would continue receiving my cancer treatments every month and getting the bone and CT scans every four months. I also took into account my impeding eye surgery and our prescription costs. I confirmed that UNC HealthCare and our primary doctor were in-network providers. Doug’s cardiologist visits were down to about every six months, so his doctor being out of network didn’t seem to be a huge problem. After doing all the calculations, we choose the Aetna plan that would save us several thousands of dollars by my calculations. After our deductible and a certain amount of out of pocket costs, paid partly by a contribution made by Doug’s company, insurance will pay 90% of in network costs, 70% of out of network. After paying  $2250 out of pocket in network and $4500 out of network, then they cover 100% (but in the out of network it would only be what they consider appropriate, we would still be responsible for any charges above that).  We hit our deductible at my January cancer treatment and would probably meet our out-of- pocket maximum with the eye surgery. Sweet!

On February 1st I called to confirm my surgery date as directed. The nurse unfortunately has to inform me that starting the 5th, UNC would no longer be an in-network provider for Aetna. She explained that contract negotiations between Aetna and UNC just broke down and it didn’t look like they were going to get back to the bargaining table. I was stunned. Very apologetically she said that I’d be responsible for paying the entire costs upfront and would have to wait for Aetna to reimburse me at 70% of what they feel is acceptable compensation. She asked if I wanted to postpone the surgery until I can work things out or find another hospital and eye surgeon. I held it together long enough to say, no, I didn’t want to postpone. After I hung up I just about flooded my basement again with tears of frustration.

Then, I got angry. I called Aetna and was told that yes, the contract with UNC has been canceled due to UNC demanding higher compensation for their services. UNC is a state hospital, so I decided to reach out to my elected representatives.  I called up Kay Hagan’s senate office in Washington and asked to speak to her aid involved in the healthcare debate. I was transferred to a wonderful young man, Jason Lindsay. He was very sympathetic and told me he would look into the situation and get back to me. Early the next morning he called and asked if he could gave my phone number to someone who would know more about the situation than he did. A short time later, Miles Lacky, the director of UNC’s Office of Federal Affairs called me. He also was quite sympathetic and promised to look into it and get back to me.

I expected I’d hear in a few days, but instead a few hours later he called and explained it like this: UNC asked Aetna to raise its reimbursement rate to be in line with the rate reimbursed by other insurance companies AND equal to the rate Aetna reimburses other, similar healthcare systems in our area. Aetna refused. There was some hope that they would come to an agreement before the Feb. 5th deadline and he gave me the name and number of the vice president of Public Affairs & Marketing for the UNC HealthCare system who was involved in the negotiations. He asked me to keep him up to date with my situation and offered any help he could provide. He also told me look up on-line for an Aetna request form that would allow UNC to treat me as in-network for a period of time until things get settled.I found the forms, filled them out and sent them to the cancer clinic and the eye clinic for them to fill out their parts and then fax them to Aetna. While I waited, I also wrote an open letter to the chairman of Aetna which I sent to several local and big city news papers. I mean, who wouldn’t want to publish a scathing letter to the head of an insurance company? Of course, it rejected by all of the papers, but a few were very sympathetic and a reporter for a Raleigh Newspaper did call up to interview me. Here is a link to that article: Aetna's fee fight adds to cancer patient's stress   (Unfortunately she interviewed me a day after my eye surgery and I was still a bit dopey on pain meds.)
 
As my cancer treatment and surgery date got closer, and I had not heard anything about my request, I called Aetna. When you call the Aetna member services number, you first get a computer voice that asks you to “describe why you are calling today.” If you ask to speak to a representative she cheerfully agrees to connect you but first she needs to “ask you a few questions to better direct your call.” She doesn’t give up. Yelling and cursing at her does nothing to get you a real person, I know that from experience. So I begrudgingly answer her questions. When I finally get to a person, they will ask me the exact same questions again. So I explained to the live person that I was calling to see if I had been approved for a Transition of Coverage for my upcoming treatment and surgery. After asking some more questions, he looked up on the computer and found no record of my applications. I asked to be transferred to the department in charged with receiving those applications and I was told it was a fax machine and no one would have that information until it was inputted into the system. Wasn’t there anyone I could speak to who could look through the incoming fax papers and tell me if mine was there? “No.” Isn’t there anyone in charge of logging in those faxes? “No.” Can I speak to someone in the department who makes the decisions about approving the applications for Transition of Coverage? “They wouldn’t know anything until it is in the system, and yours isn’t in the system.”

By the time I got off the phone, I had no more information and no one to scream at. I called up my doctor’s assistant to see if she had actually faxed it in. I’m not a religious person, and I may not believe in miracles and supernatural beings, but I do believe in angles on earth, and Jeanne G., my doctor’s assistant, is one of them. When she told me that she had faxed it the same day she received it and even had a confirmation that the fax had gone through, my resolve crumbled. Through my tears I told her all that was going on and that my treatment and scans were that week and I didn’t know if they would be covered and my surgery was in a couple of weeks and I’d have to pay upfront and that I was so stressed out about the surgery and my upcoming scans and no one at the insurance company cares and I hated that stupid computer person who won’t let me talk to a real person and that the real people there don’t know anything and it all really sucks… Jeanne calmly told me that after we hang up I should go get myself a cup of tea, put my feet up and just relax. She said not to even think about this, she will call the insurance company and get things all straightened out!

She called before she left work that day to say she had spoken to a nurse at Aetna who was one of the people who made the decisions about the transition of coverage and that she would call me as soon as she heard back from her. The next morning she called to say that a TOC was approved for TOC for Dr. Carey and the Cancer Hospital until May. I made a note to myself to take her a present when I go in for my appointments. After I hung up I realized that I still didn’t know about my eye surgery coverage. Enter now my second angle, Juan.

Juan is the financial counselor at the eye clinic. I called him and explained the situation, on the most part without tears. I gave him Jeanne’s phone number so he can get the name of the person she had spoken. It took a bit more time, and faxing some more papers to him, but I also got approved for the eye clinic and the surgery. For the first time in weeks I was feeling like things were looking up.

Then I got my first EOBs (Explanation of Benefits) from Aetna. They were all wrong, they were covering it at the out of network rate, not the in network my TOC allowed. Although a few phone called go that straightened out, for the next few months, every EOB came in wrong and I’d have to call up (and yes, go thought the whole rigmarole with Ms. Computer and again with a person) and get the bills resubmitted. With all the appointments I was having, it was an almost daily routine.

At the follow up eye appointment where I needed a consultation with one of the other doctor’s there, I had to get it approved by the insurance before I could see him. Mind you, back in the fall, when we had other insurance, the eye doctor had simply pulled his college into the room to consult. So another TOC request was sent in and an appointment was made. I didn’t even bother to wait for the acceptance; I wanted to see this doctor as soon as possible. However, when they wanted to do the tear duct procedure, I had to go into the financial counselor’s office to see if the insurance would cover it. Juan came through for me once again, not only getting it approved, but also getting them (he said it was their idea) to extend my coverage until August. It would have been a great relief, but I went straight from his office into the procedure room to have the punctoplasty on my blocked tear duct while worrying about Doug and his heart issues.

My next installment will deal with the good, the bad and the in-between of the Holsteins, but I do have to add some good news. As my August treatments were coming up, I decided to ask for one more extension of my TOC. I figured all they could say was no, but I decided to ask them to extend the coverage until the end of the year. Here is part of what I attached to my request:

To keep my cancer under control, I need to have treatments monthly and periodic scans to check for continued spread. Without the TOC, I will be responsible for over $18,000 of not allowed costs and out of network co-pay for just these treatments and one set of scans between August 14th and December 31st. The difference for Aetna in my coverage would less than half of that.

I appreciate you taking this under consideration.

My angle Jeanne G. not only faxed it in for me, but called the contact she had made when she went to bat for me in February. A few days later I received a call from a nurse who was reviewing my request. She wanted to know my diagnosis and treatments. “..and how long will you be getting these monthly treatments?” For the rest of my life…. “Oh, well, um….you’ll hear from us no later than tomorrow.” The next morning she called to say I was approved! Someone must have flagged my account, because ever since May, whenever I call to have an EOB corrected (yes, they STILL process them incorrectly) everyone is really very friendly, sympathetic and helpful.

Well, except for Ms. Computer. However I don't yell at her any more, I'm sure she gets plenty of abuse from other unhappy Aetna customers!

Distractions -Installment 1

I last reported, many months ago, that a small tumor was found on my eye adjacent to the cornea. I met with an eye surgeon at UNC and he wanted to try a chemotherapy drop in my eye to shrink or completely dissolve the tumor. The course was three weeks of using the eye drops four times a day, then three weeks off and then three weeks on again.  Near the end of the second three week course, I began having horrendous pain in and around my eye, the whole right side of my face ached and even the dimmest of lights felt as if I were looking directly into the sun. My local eye doctor said that my iris and ciliary muscles were going into spasms. He dilated my eye hoping that would relieve the spasms for a few days and prescribed an antibiotic gel. Unfortunately, something about the gel made it to feel like I had squeezed slivers of glass right into my eye. At that point I decided that I could not go through a third course of the chemo treatment. Although the eye surgeon told me that the surgery would be even more painful, at least that would be the end of it, rather than trying another course of drops and then maybe having to have the surgery. This was around the beginning of November.

The anticipation of someone cutting into my eye was somewhat balanced by the expectation that all of the uncertainty and the treatments would be over with; however, my surgery wasn’t scheduled until January 10, 2011. It was a very long and anxious wait. Before going to bed on the 9th, I did all the prep I was supposed to do, which amazingly was to use an anti-biotic wash from my chin down to my toes, but not near the eye. As prescribed, I didn’t eat or drink anything after midnight except for my morning dose of Gabapentin  (for my peripheral neuropathy) and a Xanex (so possibly I wouldn’t be a complete nervous wreck on the three hour drive to Chapel Hill). As we left our house at around four in the morning, a few snow flurries began to float down. Here in eastern North Carolina, it almost NEVER snows. Chapel Hill was supposed to have snow, but it was predicted to start well after we were to be at the hospital. I leaned my seat back, closed my eyes and let the Xanex take me to a calm and sleepy place. About forty- five minutes to an hour into the trip, Doug pulled the car over and told me we were turning around.  I sat up and all I could see was white. I blinked my eyes thinking that they were just trying to mix me up, but the scene didn’t change -there was nearly four inches of snow on the road and we were in a white out. All I wanted to do was get to the hospital and get this business over with. We were yards away from getting on I-40 and I begged Doug to keep going, the highway had to be clear. We watched several cars head down the entrance ramp onto nothing but white. Knowing that most of eastern North Carolina had few if any snow plows and that drivers had little to no experience on snow covered roads, he turned the car around. I was sobbing with disappointment and frustration, soaking the blanket I had pulled over my face so the bright white of the snow wouldn’t hurt my eye. I called and canceled my surgery and we made the forty-five minute drive home in two and a half hours, in a slippery, blinding snow storm. We ended up with over five inches of snow on the ground and even the Marine Base closed for the day.

My surgery was rescheduled for February 10, but that again pushed back to February 28 as the doctor was not going to be available.  I was devastated, depressed and downright angry.  Life was proving itself to be quite unfair.

Around the same time as my eye issues began, my sister was diagnosed with breast cancer. We didn’t have any of the genetic markers for familial breast cancer but it was still suspicious that our aunt and her oldest daughter also had developed breast cancer. We lived a block away from them growing up, so maybe there were environmental factors (did Aunt Adele serve the same canned peaches for desert as out mom did? Hum, I need to ask….) or maybe it was just one big unfortunate coincidence.

So all Fall my sister and I would try to validate each other’s fears, frustrations and anger through text messages and emails.  I tried to give her hope and a positive take on all she was going through. We’d have our own private pity parties when either one of us needed them, but I continued to encourage her to fight on and look forward to the end of the treatments and the beginning of again living cancer free. As I awaited my delayed surgery, I couldn’t seem to muster any of that optimism for myself.

Then something happened that changed my entire focus. I will post the details at a later date, but my focus was realigned to fighting my insurance company which since early February has been an almost daily battle.

I did finally have the surgery, which turned out to be a breeze. I told the doctor that I don’t do good on Percocet, it makes me feel like bugs are crawling all over me and if I take enough, I even see them… so he prescribed Vicodin. Between the Vicodin and Kentucky Fried Chicken Doug and Sarah went out and got me for dinner, I was pretty happy! The stitches were a little uncomfortable, but nothing like the chemo eye drops, so all in all, the surgery was the way to go.

When I returned for my one week check up with the resident (my doctor was away), I got a somewhat confusing pathology report:  melanocytic nevus and tissue changes consistent with mitomycin C (the chemo eye drops) treatment. Basically, a mole. A mole? On my eye ball? Are they kidding me, I went through all that pain and worry for a mole? Was there ever any cancer? Well, it seems that they don’t really know. There could possibly have been some malignant cells that the chemo drops killed, but they don’t really know.

At my one month follow up, the surgeon was there, but when I asked him about the pathology report he said he really didn’t know what it meant and I would have to see the consulting doctor I had also seen back in the Fall.  However, that might be a problem because of my insurance (my “insurance” post will explain). When I also asked about the fact that my tear duct was now clogged due to scaring from the chemo drops, he said that this other doctor was also the one to consult about that also. Insurance be damned, I made an appointment with that doctor.

At that visit he said it was unlikely that it was cancer and should not be a problem in the future, but his resident said that it didn’t prove that I didn’t have any malignant cells which could be or have become a melanoma. They will follow up with me in around six months. He said he could fix the problem with my tear duct, but we had to go to call the insurance company to see if that was covered.

To add to the ‘funness’ of the situation, I had driven up to Chapel Hill with Sarah so I could spend the weekend helping her set up her apartment. Doug was going to drive up for my appointment and drive me home. He calls me around the time he would be leaving Jacksonville to tell me that he wasn’t feeling so good. In fact, the EMS had just left. About a week or two prior his atrial fibulation had started again he had called 911 when he was having trouble breathing. He didn’t think he needed to go to the hospital since they assured him he wasn’t having a heart attack, but he didn’t think he should drive up to Chapel Hill. Duh huh! He assured me he was OK, but at that point, all I wanted to do was get back to Jacksonville. I didn’t have a car and Sarah’s car was in the shop.  I asked Sarah to find me a rental car, but instead she called my friend Marion.

They insisted I go to my eye appointment which, not only did Marion drive us to, but afterwards she drove me all the way home to Jacksonville. About five minutes into the drive home I realized that I was in no shape to have driven myself! Also at the eye appointment the resident preformed a minor surgical procedure to enlarge the tear duct that had scarred over from the mitomycin C. On a positive note, it was one way to get Marion to come down to Jacksonville and visit!

Oh, and when we went back to Sarah’s apartment to get my stuff, Sarah gets a letter telling her that her COBRA health insurance had been canceled. More on insurance companies in my next installment…

   

  

One more letter down the alphabet and I'd be a dancer

Instead of my life being choreographed to the rhythm of music and the artistic interpretation of a dancer, it’s choreographed to the appointments and treatments for my cancer. Monthly trips that take up one or two of my precious days, time that I’d much rather be spending elsewhere and doing almost anything else. However, I can’t do much about that, but I can do more about how neglectful I’ve been of my blog now that some of the distractions I’ve been tending to are easing up.

While I apologize for my silence these past eight months, I’ve got a long update in the works and will post that soon.

However, this Wednesday, the 6th of July, we are heading back up to Chapel Hill for two days of medical proceedings (makes it sound less, well, medical) . I’ll spend most of that first day having a bone scan and CT. Lots of sitting, waiting, laying around and drinking yucky stuff. Then dinner with our daughter Sarah, and thanks to Priceline, a night at a luxury hotel for less than we’d have paid at the nearby Day’s Inn! On Thursday I see my oncologist and then have my infusion and shot. 

After that comes a treat. We are heading up to Alexandria, VA to spend a few days with our son Henry. It’s been a couple of years actually since we’ve been up to visit him, and the first time since August of last year since I’ve been anywhere but here and Chapel Hill. It should be a nice get away and I’m sure lots of good food!

                                                                                  
   Happy 4th of July everyone   
                                                                                  

and a happy 119th birthday to my Papa Alex!
       

Clean House

One of my favorite TV shows lately is called Clean House. In the show they go to a very messy, cluttered house, get the homeowners to give up stuff for a yard sale where the money is matched up to $1000 and is used to redecorate and reorganize their house. The host will cajole the homeowner to give up stuff by offering free gifts like flooring, furniture and even electronics. Then the homeowners get to go to a luxury hotel for a few days while the Clean House team totally does up the house. Did I mention that this costs the homeowner nothing, except maybe some self esteem as TV cameras show America what sloppy people they are….

My house would be a perfect fit for the show and I wondered how I might get them to come to eastern NC to clean my house? Between my eye cancer, the uncomfortable treatment they are trying, issues within the family and just not feeling well, I had sunk into a bit of a depression. It got me wishing for a nice clean start, beginning with my messy house. Then the rains came and flooded our basement causing a remodel to be a necessity rather than just a wish.

It was one of those typical Holstein weeks. I had just finished my three week course of chemo eye drops which caused my eye to turn blood red, swell and the whole right side of my face to hurt. We had driven up to Chapel Hill on a Tuesday to see the eye doctors. On the way home Doug’s tongue started to bleed. This happens occasionally and holding a tea bag on it for a while usually stops it. However, since he is on Coumadin, it is harder to stop and the time before this one we had to go to our dentist and she stitched him up. As we were about two hours from home, we decided it was best to go to an ER to get it stitched up. So instead of getting home in time for supper, it turned into a rather late night.

Then next morning the rain started. The weekend before I had started to sort papers in my office in an attempt to get organize and there were cardboard boxes all over the floor. Thursday morning we were suppose to drive up to Chapel Hill for an appointment with my breast cancer oncologist and monthly treatment. Four in the morning Doug was up wet-vacuuming the basement in an attempt to suck up the water already seeping into the basement. We left for Chapel Hill around 7:00 AM for a noon appointment knowing several roads along our route were subject to flooding. Sarah came home twice to wet-vac the still seeping basement while we were gone. By the time we got home around 6:00 PM, the creek was the highest we had ever seen, with water covering our dock by about 18 inches. However, the creek was still pretty far away from the house, it was the rise in ground water and rain that was causing our basement to fill up. Unfortunately, this was most rain to fall in a two day span since we moved into this house and the flooding not only affected the back portion of the basement we were used to, but it also covered the front section, soaking the rug in the office and all of the boxes I had started to sort the weekend before. So instead of organized sorting, things were just grabbed and thrown into any empty, dry container we could find. Doug vet-vacuumed until late Thursday night and again early Friday morning until it was time for him to go to work. Happily by then the water had pretty much stopped. After those hectic and stressful few days, why was I surprised when he called to tell me his car had been hit in his office parking lot? Some guy lost control of his truck, struck the truck parked next to Doug’s, which then crashed into his parked car. I was afraid to think “well, what else could go wrong?” since it probably would! We spent that weekend pulling up the wet and smelly carpet.

Clean House didn’t come to my home, and instead of a crew of a dozen or so, there were four of us emptying my basement of years of clutter. It looks so easy on TV when they have that large crew and speed up the footage so the room is cleared in about 15 seconds! What I do have is a wonderful neighbor, Jim, a retired Marine. He is tiling my basement floor, water-proofing the walls, supervising the outside waterproofing and acting as overall handyman and contractor. He is assisted by Rusty who is one of the hardest workers I’ve ever met! It brings new meaning for me to the phrase “calling in the Marines!”

After taking everything out of the front part of the basement and piling it out on the porch or stuffing it into the back potion of the basement, Doug and I were exhausted and about to shower and go to bed early, when Sarah called. “I’m really, really sorry” she started. Oh no, what now…. “I didn’t mean to, it just happened..;.” this sounded bad… “I found another cat.” NO, no more animals, we still have the last stray she found that we could not get adopted because she is too mean. The problem is that our local pound is a high kill shelter, her office is on a busy street and the cat was too friendly to be safely left on its own, or so she convinced us.

unadoptable cat and have named him Niles, I suspect he isn’t going to be going away. I may have mentioned that we have to keep other cats away from out 18 year old cat Tipper as they upset her too much. We’ve devised a plan of each cat getting a shift where they can be loose in the house, Tipper locked in the back part of the house during the day and Jessie banished to the basement at night. However, with the work going on in the basement, this is probably not the best time to be introducing a new pet into the family. I guess I should be resigned to this by now; this is how much of our life has been, so why would things suddenly get easier?

I’m back on three weeks of chemo eye drops, with the plan of three weeks off and then another course of three weeks. If the drops don’t melt away the tumor, then surgery to remove it will be in order. My oncologist did move up my scans by a month to make sure everything else is holding steady as hoped. In the mean time my right eye is blurry and my distance vision isn’t too good. It gets worse when I am tired and driving with troublesome distance vision tires me, so I avoid driving if I can. The good news is that hanging around the house has me attempting to clean a bit more. But then, with my bad eyesight, who knows what it will end up looking like!

When all the work is done, my basement will be light and bright due to a new tile floor, freshly painted (if we can ever decide on a color), and hopefully, totally wet free! But that leaves me with the daunting chore of going through our ‘stuff’ and weeding out what I want and need to keep, what can be donated and what we might can possibly sell at a yard sale. I’m not very good at this as the fact that I have all this stuff to go through shows. However, I am in the mindset of clearing out and having a ‘potential use’ for something is not a reason to keep it. I even have Sarah in on that idea, although we are not yet sold on the idea that sentimentality is in the memories and not the object. The next thing is to make a need and wants list of other things to do around the house

It’s not as easy as they make it on TV. There is no decorator to decide on the perfect colors, organizer for solutions to storage problems and furniture placement, no matching yard sale money or companies donating wonderful new things for our house. However, thanks to some wonderful neighbors, the house is shaping up and Doug and I (with input from my artist daughter) will hopefully get things just like we want it! And, my dirty laundry (literally my dirty laundry and dusty, cluttered house) will not be aired on national TV!

Eye Update

The spot on my eye is malignant according to the eye doctor at UNC. He seems to think it is unrelated to my breast cancer, which would be good news as far a my prognosis goes. Surgical treatment involves removing the tumor and stitching amniotic tissue onto my eye. He said it is major surgery with a painful recovery... He suggested that I return on Tuesday to see his colleague who is an ocular oncologist. He treats eye cancers with a chemotherapy eye drop that can shrink the tumor instead of having to cut it off. The surgeon eye doctor will also be there and we can further discuss which treatment will be best for me. Unfortunately, in looking up information about the eye drop treatment, it was said to also be a painful procedure...... 

So, best case scenario is having to go through some very painful treatments for a simple, unrelated cancer, worst case scenario is, well, the worst case scenario.........

Sometines Getting Together Helps you Get It Together!

Meddin Family Reunion August 14th, 2010

  
Wow, it’s amazing how things can seem to pile up on you before you know it. The last few months I have been working with my sister and several cousins on a family reunion that occurred the weekend of Aug. 14th. It was a lot of work, a lot of stress, but it was AMAZING! When my mother, who gets a little confused, kept asking me why everyone was coming in that weekend, “did someone die?” I answered, “No, it is because no one died that we are doing this!” Families tend to get together at weddings, when you have two different families trying to merge and a nervous bride somewhat in charge, or at religious milestones, when again you have two different families involved and a very nervous child or teenager, or at funerals, where the guest of honor isn’t around to enjoy the gathering. So, plan a family reunion before the next funeral, you won’t regret it!

At ours, I saw cousins I used to hang with, but hadn’t seen or really been in touch with, for almost 40 years! I met a new generation of family members, and better yet, they were able to meet each other! I met members of the family from distant branches who I didn’t even know about growing up. Timing couldn’t have been more perfect. The majority of the younger family members were in their 20s and early 30s, so they appreciated this gathering more than they might have at a younger age. Technology was available where presentations, pictures and old movies could be arranged and flashed onto a large screen in a way for everyone to enjoy, and it was held in the old home town so favorite places could be visited and food enjoyed! But most of all, the guests of honor, the last few of the older members, (my mother, uncle and great aunt) were there to share wonderful old stories and enjoy the festivities. As I said, we had it BECAUSE no one died!

Now that it’s over I thought I’d have some time to relax and not feel so busy. WRONG. Besides trying to catch up on paper and house work too long ignored, my days have been filled with upset kitty cats who tend to pee in inappropriate spots, poisonous snakes in my back yard and the sound of a jack hammer demolishing part of my driveway in an attempt to waterproof part of a basement wall. Normally independent pets have become glued to my ankles and, because of that, bathroom time is no longer a solitary event…..

Oh, and as things seem to happen, a spot on my eye that my eye doctor had been unconcerned about for a few years, saying it was just a cyst, is now of concern and needs to be removed and biopsied. I’ve learned to handle having a metal and rubber port under my skin accessed for my infusion and a two inch needle inserted into my nicely padded read end every month, I’ve gotten used to drinking nasty stuff for my scans every 4 months, and I survived a bone biopsy of my rib a year ago, but now to have something actually cut off my eye, gees, what else will my body think of to entertain me? Unfortunately, one of the ways I cope with unpleasantness is to close my eyes shut and imagine I’m sitting in a beautiful meadow high up in the mountains on a calm and sunny day. This, unfortunately, will be a new and eye opening experience…..

I always try to learn something from my experiences. Though I’m not sure what eye surgery will teach me (I thought my mother taught me not to poke things in my eye….), the following is a list of random things that recently popped into my mind, in no particular order:

•    You can catch more flies with the good sense of humor, then all the money in the world.

•    From Molly the Owl (http://www.ustream.tv/theowlbox): give all you can, and when things don’t work out, clean up and move on.

•    Also, watching toddling owlets on the computer is way more fun to watch than most TV shows!

•    A lick from a puppy gives a lot more pleasure than getting your licks in on your opposition.

•    Chocolate covered strawberries give you a whole days serving of healthy fruit covered in a serving of comfort.

•    Crying over spilled milk means more liquid to clean up.

•    People you expect the least from generally give you the most.

•    Some people don't have an ulterior motive when they do something nice for you.

•    When you have cancer, things that people say about you (good or bad) have a lot less significance than it did before.

•    It's not what others say to us that count, it's what we say to ourselves.

•    You heal from the inside out, not the outside in.

•    Waiting for a loved one who is having surgery is a lot harder than being the one having the surgery.

•    Sometimes you have to be like Emily Lattella, just say “never mind” and smile.

•    Sometimes when you love someone, it hurts.

•    Respect other people, whatever their position in your life is, whatever their position in the world is, by doing so you’ll learn to respect yourself.

•    Everybody has something of value to share.

•    If you think you are above everyone else, you must be living in a very boring space!

•    Insecure people are the ones acting overconfident and condescending.

•    It’s really hard when love two people who don't like each other.

•    Laughter is the best medicine.

•    Those that are good sports in life are great people to be around!



•    Sometimes when you put your foot in your mouth, all you can do is add some spices and swallow.

•    Cancer teaches you what's important in life and what‘s just bull shit.

•    Letting go of old baggage brings wonderful new things to your life.

•    It's not always about me.

•    It's usually better when you are trying to help someone to let them lead the way.

•    People deal with things in their own way.

•    People say things they don't mean, but not always on purpose.

•    A casual comment can always be twisted to mean something insulting.

•    When you do something expecting to get some kind of response from somebody else, their response is never as good as you might give to yourself!

•    Also, if you do something for yourself and it doesn't quite work out, you don't get as disappointed as when you do it to impress someone else!

•    From Meddin Studios: Sometimes when you name a business, you get a family

•   People don't become more mature just because they get older.

•   Smiles can make all the difference; I've learned that from people smiling at me!

•    Sometimes you just run out of time.

•    People that you are insecure about are the ones you want to show up or impress, but when you try to impress someone else, you never really can, and you're always disappointed.