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.

Good News!

The good news first: all scans show no change. 

The bad news is that I am wiped out from two days of hospital visits and weeks of anxiety over the results, and I get to do it all over again in four months. Oh well, I am grateful that my cancer seems to be holding steady and not advancing past the two spots in my bones. So I will continue going up to Chapel Hill for my monthly infusion and injections and will see my oncologist every other month.

Before my regular oncologist came in, an oncology fellow came in to check me out. She was very nice and started asking me lots of the normal questions: “how are you”, “are you having any pain”, etc. After a couple of more questions I finally piped up “I’m sorry, can I stop you for a minute? Will you give me the results of my scans?”

"Oh, yes, you would want to know that right away wouldn't you." So young with so much to learn! Of course when Dr. Carey walked in, the first thing she did was give me a big thumbs up.

Other highlights: 

• They only give you an extra large size of soda mixed with contrast to drink before the CT scan instead of what seemed like a double Big Gulp size. 
• There was a farmer's market going on in the hospital lobby Wednesday so I bought some fresh, just picked figs! Yum! 
• The oncology nurse saw me reading Stig Larson's second book, The Girl Who Played With Fire and told me that Daniel Craig is set as the lead in the American movie of the first book in the trilogy. Now who will play Lisbeth Salander?
• I fell asleep as soon as I reclined the car seat and didn't wake up until just a few miles from home on the way back, leaving Doug to deal with the traffic and delays on I-40!

So now I'll take a few days to deal with the side effects of my treatment, relax from my pre-scan stress and get back to the many projects I kind of let slide this past week. Life as usual, or in my case, life as chaotic as usual!

Anticipation......

Well, it is just a couple of days away from my next set of staging scans. I know I really should post this AFTER my scans so y’all don’t have to wait for the results, but I figured if I had to endure the wait, my friends can wait along with me. I know that isn’t very nice of me, but then people with cancer don’t always have to be nice, do they?

The worst past, is somewhere inside of me I want the news to be bad. Not that I WANT the news to be bad, but the waiting for the other shoe to drop is the perpetual state I seem to be in. Eventually the news will be that the mets have grown, or spread to other organs. That is just a fact of stage IV cancer. Having them spread isn’t a definite death sentence, but it does mean a step up in treatment and the idea that the cancer is becoming more aggressive. So each time I get scanned the possibility of receiving bad news is there. Unfortunately, getting good news keeps me in a state of anxious anticipation, but then at this stage, getting not so good news also keeps me in this state of unknowing. Cancer really sucks! I know that there are some people who seem to be pretty good about just taking things one day at a time, or looking at the glass half full. In other words, each good scan is the expected result, not that bad news is inevitable. I’m not one of them….

Actually, I’ve not been as bad as I usually am pre scans. I guess the Zanex helps, as well as being totally preoccupied with preparing for the upcoming, first ever, Meddin Family reunion, thanks to a generous offer by Meddin Studios, the group who bought my maternal grandfather and his brothers’ old meat packing plant. Keeping the Meddin name for their business and including the flavor of the old plant, they wanted to know more about my grandfather and his brothers, and the Meddin family. Except for my first cousins, and a few other cousins who still live in and around Savannah, I haven’t seen many of these family members for 40 years or more. Also included are some branches of the family that were recently discovered by two cousins who have been doing genealogical research. So seeing old family and meeting new has been the better part of my anticipation this summer.

The other things that has made my summer less stressful was a first ever vacation with my husband. Our two children, who honestly haven’t ever been too consistent at remembering our anniversary did something unexpected, they sent us on a cruise to Alaska for our 30th anniversary! Our past trips have always been to see family or a quick weekend a short drive away. We had planned our first vacation, to the Gran Canyon, for our 25th anniversary but had to cancel the day before we left due to an illness in the family. So this trip was a much appreciated gift and the timing couldn’t have been better. A trip narrative and pictures will be forth coming when I can cull down some of our 5,262 shots! How many whale tails and eagle close ups are you really wanting to see?

So, our plans for this week are a cardiologist visit for Doug, driving up to Chapel Hill the next day for bone and CT scans, spend the night at the Carolina Inn (thanks to Priceline, at less than the internet price for the Day’s Inn!) and then my appointment with my oncologist for the results and my infusion treatment and falsodex shot. Unfortunately my scans come on my daughter’s 26th birthday. She gets to spend it pet sitting for us after work, but we’ll celebrate it with a dinner out at another time. Life has its priorities, unfortunately not always what we would choose them to be.

Happy Birthday To Me

Happy birthday to me
Happy birthday to me
Happy birthday dear me
Happy birthday to me!

Why am I singing happy birthday to myself when so many wonderful friends and family wished me happy birthday, both online and in person? Well, it’s really very simple. With all the doubts, depressions and fears I’ve had this year, if I don’t cheer for myself, then I can’t really accept and appreciate all the love and support I’ve received from everyone else. And cheering for myself has not been very easy. Like most everyone on earth, I am highly critical of myself. I never seem to feel totally confident in my decisions, am a bit insecure in social situations, and between my body being disfigured surgically and the changes age and weight gain has made, can’t say I like what I see in the mirror.

However, I need to remind myself that decisions are just choices, and choices are just different paths along the road of life. Being good in social situations doesn’t really change who am as long as I continue to strive to be true to my core values, show loving kindness to the world around me and be respectful of others. And as far as mirrors are concerned, it’s just a piece of glass. Throw a rock at it and it shatters easily into a million different pieces. Throw a rock at me, and if I don’t duck in time, it will hurt, but whatever damage it may cause can be healed with time and good medical care.

Birthdays remind me that I’m getting older, but getting to be old is a goal not a dread!  Yet, since getting old is not a guarantee (it really isn’t for anyone), I also try to celebrate each and every day. The challenge is to find the joy hidden in the drudgery of a daily routine, to feel love through the mundane conversation with a family member or friend, to find peace in the middle of a crowd, and to seek tranquility in your small backyard patio. Take a moment to watch a dog taking a cat nap on your sofa while you sit and watch the nightly news, or a cat doggedly chasing the roach trying to hide under your kitchen sink. They know to take advantage of any opportunity to rest or entertain themselves, and they don’t feel guilty about it. They have so much to teach us, and we, as a species, have so much to learn! Appreciate the little things because they can be found all around you. The big things in life happen, but infrequently and not always as you had hoped. A good cup of morning coffee or a quite conversation about plans for the upcoming weekend happen all the time and if you let them, can inspire in you a little joy, a bit of love, or other feelings you think only the big events to bring you.

Sing to yourself next time on your birthday, say out loud that you appreciated spending the day with yourself, smile at the beautiful person looking back at you in that mirror. Live as if everyday is your last, love like time will stand still and keep your dreams close to your heart.

I'm still here....

Hey all, I’m really am still alive. It seems that quitting my job to give me some more time to do stuff I want to do just gave me no more excuses to not do the things I had to do….. gees!

A quick update here. My last two scans have showed no changes in the spots in my bones and no new lesions, so once again, the news is good. Now I just have to learn not to let myself get so worked up and scared before my next scans, it really doesn’t do me much good.

Several weeks ago, my neck was really huirting. Not due to my cancer, or even the seven hour car ride home from visiting my mother in Savannah, it was from sitting down at the creek and having to constantly look from side to side as more activity than I’ve ever seen down at the creek was going on. It was truly marvelous!

I first noticed a large fish, maybe a bass, sitting in the middle of a gravel clearing she cleared from the normally muddy bottom of the creek to lay her eggs. Then, as I was feeding the smaller turtles, I saw the medium sized snapper over by a dead branch about four feet from the dock, gobbling up the cheerios I was tossing out. The gar fish were extremely active, proposing in and out of the water in circles after small schools of fish. Up and down the creek different groups (what do you call them: schools, hordes, mobs, packs?) splashed in the gater grass to spawn in orgies of as many as six or seven in a bunch. Above us an osprey was hovering over the creek watching for a catch.

All this activity caught the attention of my little Mattie, whose neck is going to be a sore as mine. If this wasn’t enough, my big snapper started gobbling up the cheerios making sucking sounds as he seemingly inhaled the cherries, only to have most float out of his mouth as he drew his head back under the water. While this was going on, several ducks made a bee-line right to me, and since they didn ‘t seem to be bothered by the three dogs sitting with me on the dock, I presume that they were the five babies we feed all last summer. Several gray ducks, siblings from a group I remember from up the creek last summer, also hung around but wouldn’t come close to the dock. As our group from last year greeted each other with the Muscovy dance, a combination of neck bobbing and head puffing accompanied by a hiss like quack. Poor Mattie was beside herself wanting to go chase them, but anticipating some duck activity, I had the gate up and a leash on her.

To make things even more exciting, one of the male duck mounted the smaller female, and as the other two egged him on, held her head down with his beak and proceeded to have his way with her. (Did you know that male ducks have cork screw penises? Look that up in your Funk & Wagnalls!)  A while later one of the males went after the other female but was discouraged when another male rushed over and let it be known she was not to be touched. He also discouraged two of the gray ducks from taking indecent liberties with his lady duck!

The next day was not quite as busy, but the ducks returned as did my large snapper and several smaller slider turtles. However, what made it exciting was an incident shortly before we headed back up the yard to the house. Early on the ducks approached full speed down the creek looking to see what I was treating them with this day. Several sliders and the big snapper were in attendance, and strange as it seems, the snapper was the one to be pushed away from the food. Although his head was larger than some of the slider turtles, he'd contort himself to try and grab at the cheerios without getting a turtle instead! In turn, the smaller turtles seemed to be out grabbed by the ducks when it came to going after the same cheerio. As all were just at the edge of the dock gorging themselves on the treats I was offering, Mattie could no longer contain herself and slid right over the side into the creek. I don’t know who was more shocked, Mattie; Doug and I; the other dogs; or the ducks and turtles! Careful not to drop my camera into the water (I was taking great photos of the ducks and turtles but missed the opportunity to get the surprised look on Mattie’s face as she realized that her feet were no longer on solid surface!), I pulled in the leash until I could grab the handle of her life jacket and pull her out. I might have waited to see if she would know to swim to the shore if the snapper wasn’t within snapping distance of my little rescue dog! I still wonder if she would have swum to shore or after the ducks! With her wet and smelly, we headed back to the house where she was given a bath and a blow dry!

The big old gator showed up on mother’s day. When one of the ducks got gotten hold of by one of the snapping turtles and I had to use a stick to get him off, I decided it was time to band the ducks. I hated to do it, but I had to scare them away. Mattie wasn’t happy about it as duck chasing, or hoping to get past me to duck chase, was her favorite past time, even after her not so graceful dive into the water! However, she has discovered that fish jump out of the water and will keep watch hoping one might accidently jump right onto the dock. She watches so intently that by the time we come back inside, she can hardly keep her eyes open.

Though the creek is my afternoon vacation spot, a bigger trip is on the horizon! My two wonderful children are sending Doug and me on a cruise to Alaska for our 30th wedding anniversary! Not only is it our first cruise, it is our first real vacation, ever! When I was a little hesitant about going this summer, my Sarah, bless her heart (and blunt honesty), said “you know mom, you might not be around to go at a later date….” So, we are heading off to Alaska mid June! Hopefully I’ll have many years to think back and remember this trip!

Please keep nagging me to write

Thanks to all of you who remind me I need to post, I’ve not been too good about it lately and I appreciated the reminders!

So I left off with splashes of paint on my walls, which unfortunately still remain. I did manage to move all my computer stuff off the desk so it can be removed, although it too is still there. I guess it hasn’t been a very productive few months…… Except that I did retire from my job, am making some efforts to take care of some physical problems not directly related to cancer and did have an electrician come in and fix the basement lights and put lights out in the new doggie yard. So, there is some progress.

Other mile stones were reached in the last few months. My son turned 28, which sounds way too grown up. Doug turned 65 which sounds way too old and we celebrated our 30th wedding anniversary, which sounds wonderful! I don’t mind being married to an old man, he’s still cute, sweet and extremely lovable! We also had 8 inches of snow down here which gave our little Mattie a very cold belly and Rosie cold feet. Trooper didn’t seem to mind one bit, but then she can still walk in 8 inches and not have to hop to get through.

This week I had another port put in as my veins were just about to give up even though they have been hiding for the last few treatments. Just to refresh, a port is a small device that is placed under the skin, usually just below the collar bone that connects to a catheter that goes into a large vein and down into the first chamber of the heart so that medications can be injected into a large reservoir of blood. The port has a rubber top that a needle can access directly through the skin. This time I was given the new and improved "power port" which can also be used for CT and MRI scans. Those need the contrast media injected at a high rate which the old ports could not handle. So Instead of the stainless steel and black rubber doorbell looking thing, this is a purple triangle about the size of a quarter with a clear rubber center. Doug thought it looked like a dog tag. Anyway, it is under the skin just below my collar bone and as soon as the incision heals, all you’ll see is a triangle bump under my skin.

Except for the falsodex injections, which have been doubled so I get an injection in both of my butt cheeks every month, I'll never have to be stuck again except to access the port. That stings a bit but it's easy to find and only needs one stick unless the nurse is blind. But even then it has 3 little bumps that can be felt to indicate exactly where to stick! They can draw blood as well as hook up the infusions. I am now a card carrying member of the Power Port club!

When I was having the port put in, I was ‘juiced up’ enough to chat pleasantly with the nurse and x-ray tech attending me. Seems the tech graduated x-ray school a year before me, but from UNC, will be married 30 years in June and was born and raised here in Jacksonville! Or else I totally imagined all that! I remember the numbing medicine stinging my neck, then some pulling around my neck and then a moment later they said I was all done. According to Doug I was in there 1 ½ hours, but it felt like all of 5. That 'happy juice' is great! I do remember the nurse coming to give me a bag of cotton balls she said she promised just before we left but I have no earthly idea what they were for and why she promised them to me….. but I did get to come home with a goody bag full of gauze pads, tape and hydro covers to protect the incision when I can finally take a shower, which should be tonight! Since the tube goes directly into my heart, the risk of infection is taken quite seriously; even I was given a mask to wear during the procedure.

Now that I need to get two injections of falsodex every month, I did convince the nurses to let me lean on a gurney in a private'ish' room rather than stand in the bathroom clinging to the sink. Each injection takes 30 seconds to a minute to push in, so it is kind of an ordeal already. I always get a kind laugh from the nurses as I limp past them after my shots and the nurse comes out shaking her stiff hands from pushing that thick liquid into my ample, but still not made to accept an extra 500 cc’s of stuff, buttocks.

Next month I will have another set of scans (bone scan, CT of chest, abdomen and pelvis), to see how things are progressing. This is always a stressful time for me as the news can be good, bad or no change. If the news is good, or no change, then I’ll have a good two months until I start to anticipate the next set of scans two months after that. Kind of a roller coaster ride, and I HATE roller-coaster rides! I tried to see a therapist here in Jacksonville to help me cope with the not so good time before my scans, but unfortunately I started with her during my ‘up’ two months and we just never clicked. She was nice enough, but when she was sincerely shocked to learn that I do not believe in heaven, well, I figured this wasn’t going to be what I needed. She wasn’t trying to push her religion on me, but I guess it never entered her mind that some people don’t believe in an afterlife, or in the concept of reward and punishment for one’s deeds after death. It was an interesting experience though, kind of an insight into how others think and believe so completely.

I don’t belittle belief in religion; I know that it can be a powerful force in someone’s life. A woman I knew, a devout Christian, foster mother who adopted two children into her family of 4 biological children, someone who worked very hard to live her beliefs, was struck by tragedy several weeks ago. Her husband was killed in a freak accident, leaving her with children aged 20 to 5 to raise on her own.  I know her faith will get her through this and gives her the comfort she needs. Another woman I knew died unexpectedly 2 weeks after giving birth to her second child, a healthy baby girl. From what I understand, her husband's faith has been helping him cope with this horrible situation. For these families and their friends, religion gives them strength, comfort and a path to follow when all they probably want to do is crawl under a rock and hide. I won’t go into the negative aspects of religion, people need to see and decide for themselves both the good and bad of organized religion. I long ago came to peace with my lack of belief and find that my concept of life and living works well for me on the most part. I hold on to the tradition of my religion because it is a link to my past, my ancestors and to my family and hopefully to future generations. I see my role while I am on this earth is to leave it a better place after I am gone. Random acts of kindness rather than devout prayer, connecting with the goodness everyone possess somewhere inside of them rather than judging them based on one rule of thumb, and trying to be the best person I can be is what have chosen to follow. Like every one, religious and non-religious, I don’t always meet my goal, but I try. I hope that when I die people will say I was a kind person and somewhere along the path we two shared I gave something to them that they needed.

Well, back to here and now. We are off to find out why Doug’s computer is rattling, pick up cat food and come home to try and finish at least one project I have planned!

Painting My Basement Office and Other Lessons in Life

We’ve lived in this house for six years and for most of that time I have wanted to paint the room we use as an office in the basement. Though it does have nice windows, the fake, dark paneling made the room somewhat unpleasing. After many starts and no finishes, I came to the acceptance that I was probably chromophobic. In all the houses I’ve tried to decorate since I’ve been married, all ended up painted in various shades of white. Don’t get me wrong, I love color and admire people with the courage to paint a room in rich bold shades. I can even imagine my rooms with accent walls, faux finishes, even dark colors with bright trim. Yet, whenever I try to choose a color, I get so overwhelmed and confused that in the end I pick the eggshell cream or vintage white. Recently, though, I had the misconception that “this time I can do it” and headed off to the hardware store. I knew I wanted beach colors. I wanted to feel like I was sitting out on the porch of a beach cottage. That should have been the clue for me: I wanted to FEEL the beach colors. However, I had yet to make that observation. Doug happened to be with me, and I tried to explain to him what I wanted as I struggled through the paint chips. I could not find what I wanted and I fought Doug at his every suggestion. All the paint chips laid out in chromatic shades just did not seem right. Luckily, I found a picture with the colors that felt right to me and Doug tried to find matching swatches. At one point he said to look for a blue with more red. This made absolutely no sense to me, blue was blue and red was red. To mix meant purple, or so, no pun intended, my black and white thinking was telling me. This is where I would normally get mad and tell him to forget the whole thing. But I wanted my beachy office space! I’m not sure when the revelation hit, but it finally dawned on me, I wasn’t looking for a color; I was looking for a feeling. Doug found several paint chips that were closest to the picture and we brought home small sample bottles of paint. Though still not the same as seeing the entire room done, the squares of color now on my wall make it a little easier for me to see which one will be right for this room and has eased my fear of picking a color, somewhat.

Picking paint color wasn’t the only problem. For years I would see things, do things, write things or make observations that made perfect sense to me, but not to anyone else it seemed. There was the time I wrote a ‘cheer’ song for my youth group to the tune of a popular song, or the banner I designed for a rally. They were perfect expressions of what I wanted to say or show, yet no one else thought they were “right.” At the time I thought it was that they didn’t like me, as it seemed that every suggestion I would make would be met with much opposition. I can’t say it did much for my ego. One of my freshman college roommates would always make comments about how I choose to dress and I decided she was just a fashion snob. Then there was the time I insisted that a particular celebrity could be the identical twin to a relative of mine and no one else saw the resemblance. My husband and I would go out shopping and I’d pick out the perfect accessory to match some furnishing we owned and he’d say it doesn’t match at all. Knowing that sometimes it isn’t worth the hassle of arguing with me, he’d let me bring it home and wasn’t even obnoxious about it when the color was so way off I really wondered what I was thinking. Left me kind of wondering what was ‘real’ and what wasn’t.

Then there is my face recognition issue. I just figured I wasn’t good with faces. I could see my doctor’s receptionist a hundred times, yet wouldn’t know her if we bumped into each other in the grocery store. But that was common, wasn’t it? I also had a hard time remembering what people looked like. I have a heck of a problem trying to keep characters straight in movies unless they had some outstanding physical difference. A movie about the 50’s and early 60’s when all men had short, slicked back hair and black rimmed glasses were especially difficult for me. And forget remembering who our server was at a restaurant. As with my celebrity look alike assumption, I guess faces didn’t register in the correct way for me. This just added to the distrust of my own observations. Sure didn’t help me feel confident to make decisions based on these observations.

When our recent paint picking episode showed me that I observe feelings and not what is actually represented, I think I finally figured it out. I ‘see’ and ‘hear’ the feelings that are provoked in me, or that I try to provoke in others. Since how anyone feels differs from one individual to another, a color choice, a face, or words in a song can illicit different “truths” to each individual. So I may not be wrong, as my “truth” is just a valid as anyone else’s, but it does make it more complicated! When people look alike to me, it is the similarity I see, not in facial features, but in their emotions, confidence, and their sense of self. I don’t see the blue dress with the Peter Pan collar someone is wearing; I see the flowing skirt, the graceful stance of the wearer and the pleasing color. I will see the casual self confidence of a button down shirt, not the expense of its Italian origin or the mass production of a Wal-Mart brand.

People decorate and paint their rooms every day, but for me, it became a wonderful lesson and helped ease 53 years of never knowing if it was me, or everyone else, off kilter!

Hello world, I think.....

I spent so much time this fall worrying about dying, I forgot about living! So, with my recent staging scans reporting that the cancer is holding steady (not shrinking, but not growing), it is time for me to crawl out from under the cover of depression and doom and face the world head-on once again.

To prevent me from seeing my own shadow and diving right back under the covers, I decided to make some changes in my life. First off I’ve decided to retire from the work force. It wasn’t as easy a decision to make as it might seem. Since I was only working part time, the loss of my income won’t be a dramatic change. However it did provide some extra spending money so I didn’t feel so guilty when I got carried away with some online shopping opportunities and it could be a problem as our medical bills continue to grow. Another issue is that I will miss interacting with my boss and the other people I see at work. However, with the monthly trips to Chapel Hill and the times I just don’t feel well, I wasn’t able to give the extra time to get everything done at work. Though it was a 10 hour a week job, most weeks I spent 15 or 20 hours which I could take as comp when things were not so busy. But I have not been putting in the extra hours lately and I seemed to be constantly playing catch up and just couldn’t get things done the way I like them. The feeling I wasn’t doing the best job I can do, and dealing with the other issues in my life right now, I decided that it was time to let go of this particular stressor. So, as soon as Missi can find a replacement, and I can get them trained in all the “procedures” I developed trying to automate the office somewhat, I will join the ranks of the unemployed. Though I will get unused vacation pay, I will lose all the accumulated sick leave, which, since I had so much comp time, I rarely used, is over 200 hours. That is almost a half a year! Unfortunately I can’t even donate them to another state employee who may be in need… Oh well. Then there is the conundrum of having the free time to do more things that I want to do but then not having the funds to do them.

The next issue I need to face is doing some work around the house. The bathrooms need upgrading, the kitchen counter needs resurfacing, the basement needs waterproofing and painting. About a year and a half ago I played with a design for a wonderful master bedroom and bath that I’d love to live in. I put that idea away when employment concerns and then health issues made a big remodel seem impossible. When I thought about revisiting the idea, a few things came up. Number one of course is finances. Whatever we do around the house, it needs to add to the real estate value but not over-value the house. I also don’t want to totally deplete the money we had put aside several years ago. Number two is how much disruption and mess I can tolerate while the work is being done. I’ve lived through several remodels, and they are horrible. In the past they have mostly been done in preparation for selling the houses, which was even worse since I wasn’t going to be enjoying the fruits of my misery. So, how much and how long am I willing to live in a construction zone? I do have several options: I can give up the dream of a luxurious and spacious bed and bath and just do a simple superficial update in the bathrooms. This will be the most cost effective and the time involved a lot less. But it leaves us with a tiny master bedroom, tight closet space and a teeny, tiny bathroom. Not a great selling point in the future and not so much fun right now. Water proofing the basement will still be a costly and disruptive process, but one we don’t really have an appropriate alternative. What I need is one of those shows that come in and do the work in two days. However, I know once we get started, there will be more issues brought up, silly things like getting the electrical up to code, re-wrapping the heating ducts that the hell kitten (also known as the seemingly permanent foster cat Jessie, that’s another story) has ripped up, and fixing all the leaks that bring rain water into the house from the chimney, windows and a few other places. Doug and I are great at just putting up with stuff like leaks, inadequate wiring and cramped spaces, but them get forced to correct them when it gets time to sell a house.

Wow, just reading what I wrote, I see myself heading back to that blanket… damn, all the pets have gotten there first and there is no more room for me…. Well, hello world……

Lemonade

So I was thinking, I’m really sick of lemonade. Life has not been very nice to me this year and I don’t think I need to find the good in it, right? I mean, lemonade may taste good for a glass or two. But squeezing all those lemons is the putts. The juice gets in your eyes and stings any cuts on your hands. Then you have all these squeezed out lemon halves to deal with along with all the sugar that’s got all over your counter top. Sometimes it is easier to say life sucks and that’s it!

Well, tomorrow is a big day. We head back up to UNC for some blood work, a bone scan, chest,abdomen and pelvis CT and a head MRI. But the fun part is we are going to have dinner with some friends from Ossining, NY whom we have not seen since 1991! It's great when we can cross paths with old friends!

Then we wait, at least until Thursday when we go back up to Chapel Hill to see my doctor and get the test results. These tests are important because they will show how well the treatment I've been on for the last 4 months are working. Best scenario: all bone mets have disappeared or at least remained in just the one spot and not gotten any bigger. Worst: more spots and in places other than the bone.

A glass of water anyone?

2009 FALL THREE DAY YOGA RETREAT

What would you expect when you walk into a roomful of women with breast cancer? A bunch of older, morose women? Lots of anger, tears and pitiful faces? Well, you haven’t been around enough women with breast cancer. I recently attended a three day yoga retreat put on by the Libby Ross Foundation (http://www.thelibbyrossfoundation.com/) for women with breast cancer. Though most refer to themselves as survivors, I prefer to refer to us as warrior queens, women of exquisite strength and grace!

My friend Connie had attended one of these retreats last year and insisted I had to go, even though she would be unable to go with me. My first inclination when walking into a group of strangers is to mentally pigeon hole and label the different types of people and to see with whom I have the most in common. At first glance this was not easy as there were such a variety of women there, young, old and in-between. Some had outward signs that they were dealing with cancer: wigs, head scarves, recently returning hair. Some looked like they were tri-athlete competitors; some looked like the average every day woman you see on the street. One thing I did notice about most of the women there: their smiles. The retreat promised three days of pampering and yoga, but as we introduced ourselves to the group there was more of a commonality that we were there to connect with other women battling this disease and to give and receive strength from the bond that had unfortunately united all of us.

In the capable hands of the two instructors, who both have a connection to breast cancer, we breathed, stretched, moved and breathed some more. There was no coddling and pitying of our situations, just adaptations to our unique abilities. We were encouraged and sometimes pushed to learn what we were capable of, not what we were not. We were also taught how to calm and restore our energies, spirits and sense of well being. Though most of the time was spent learning and practicing the art of yoga, during meals and free time we could get to know each other and learn who everyone was, how breast cancer had affected us, who each of us were before and after our diagnosis’s.

Personally, what I got from each of my new friends and sisters varied with each woman I got to know. Some of the women were so energetic and joyful that I could feel my own energy and joy grow with each moment I spent with them. There were several women whose constant giggles embedded in me a lighter sense of my own struggles and I loved them for that. Some women, who were more on the spiritual side, bestowed to me a calmness and an inner connection to my own spirit and hope. Others, whose inner strength radiated outward, helped me find my own strength. Even those whose illness made them appear more vulnerable, seemed to allow me, and others, to feel free to express our own fears and not feel ashamed or weakened by them.

Though I’ve classified some of these women by certain attributes, the real truth is that each had a little bit of the spiritual, vulnerable, strong, joyful, and, especially when encouraged by our yoga instructors, energetic side of them! I think we instinctively knew what someone else needed and gave that part of ourselves to encourage what someone else needed at the moment of our interaction.

Our three hosts, Lori, Gabby and Kathryn, made it their mission to make sure that each and everyone felt relaxed, papered and cared for. The facilities were wonderful, the food exquisite and the little treats and goodies were all very much appreciated. I can’t thank them enough for sponsoring this event where all but transportation and accommodations were provided by the foundation. Yet, each time we thanked them, they insisted on thanking us for attending. These women gave their all and have lived up to the foundation’s mission and in doing so honored Lori’s mother, the name sake and inspiration of the foundation!

Before the retreat I stopped in Savannah to spend a few days visiting my mother. Due to her Alzheimer’s I felt I could not be completely frank with her about how I felt and how I was doing. It was torture. I don’t know if it was because she could not remember that I had told her of the cancer’s return and I didn’t think it was fair to constantly remind her of that, or because she taught me so well that I felt guilty lying to her each time she asked me how I was doing. I felt an acute need for her to be my mother, to put her arms around me and comfort me, but I couldn’t ask her for that, and it hurt. None of her children live nearby, but because of circumstances, I was able to visit more often. We are very similar and even as she lost much of whom she had once been, visiting her had always been pleasurable. She began to lean on me and I enjoyed doing things to help her, even though her stubbornness sometimes made doing so extremely frustrating. I hate that I cannot be there for her as my treatments and health make it increasingly more difficult. My siblings have stepped up, but she continues to let me know how much she misses me when I’m not there. So I have lost the ability to have the mother I need and be the caretaker I chose to become.

On a lighter note, here is an interesting fact I learned this weekend: Saline implants glow in the dark in a disco setting!

Fighting the brave fight, somewhat

Sorry for my silence, I find that I can’t seem, or don’t want to, write when I am depressed, and depression overtook me for a few weeks. Part of it was dealing with some chronic pain, which may or may not be related to my cancer. Part of it has been dealing with doctor’s offices, insurance companies and the everyday hassles of managing a house, a job and a family. Our home owners insurance was raised by $1000 due to our area being prone to storms. However, we haven’t had a big one in the 6 years we’ve been living here and I come to find out that they have lumped us in with the vacation beach areas. We don’t have a vacation home, but we get to share in their financial risk pool. Then our medical insurance raised our co-pays and deductibles. What we pay for our medical insurance and my co-pays just for my monthly treatments will come out to over $11,000 for the year, out of our pocket. Our yearly pay increase doesn’t come close to that. That doesn’t even count our pharmacy costs and any special tests I will have to see where my cancer is going. Nor does that count Doug’s expenses, which include a $15 charge every time he has to call into his cardiologist because his INR is too low or too high and they tell him how to adjust his Coumadin dosage. Insurance will not cover that at all. However, without insurance, just my monthly treatments alone would costs over $60,000 a year. Not that the insurance company pays that, they get discounted rates so they pay about $36,000.

***warning: political opinion*** If you don’t understand the need for Health Care Reform, think about this. We pay $8000 a year for our insurance premium, with Doug’s employer paying, I presume, a good bit more. The insurance company pays out their discounted rate of $36,000 (but remember that if a policy holder doesn’t get sick, they and their employer still pay the premiums, and the insurance company adds that money to their profit.). However, for people without health insurance, they would pay the entire $60,000, unless of course they are indigent, then they possibly get free, but maybe substandard, care that I subsidize both in my insurance premiums and my co-pays and co-insurance, or when I have to pay it all out of pocket because I haven’t used up all of my assets to become indigent yet. There is something wrong with this picture.

Taking a look at the actual bill for my treatments, I think that the office visit charge for my oncologist is very reasonable at $136 considering her years of training, continued research, knowledgeable treatment considerations and the personal care she gives me and all her patients. The cost of the care for the nurses and medical staff are also well deserved. I do question the extreme cost of the medications I receive, which is approximately 90% of the $5000 monthly treatments I get. Yes, over $4500 goes for two medications I get. I would love to know the actual costs for manufacturing them. I understand we are paying for the research and development, but if there are just 1000 other people on these medications (and I’m sure there are many, many more across the US) would $54,000,000 still not cover the cost of research and development?

When I let go of my concerns about the financial end of things, I start to contemplate my future. I think of the things I always thought I would do ‘someday’ and realize that someday will never happen. Between all the medical appointments, feeling sick and expenses, much of these dreams have been relegated to wishful thinking. Even goals to fix up my house have been tucked away into my little secret box of unessential wishes. Even with a positive outcome, I don’t know how the job market may influence our place of residence and our planned timetable for retirement is now totally derailed. I weight hoping for a good prognosis and a long time being around, thus needing to conserve funds, with planning to live each day to the fullest and realizing some of my wishes in the time I have left. But most of all, I think it is the uncertainty that bothers me the most.

When I first had cancer I was told, don’t be pessimistic, many people survive breast cancer now days. Then when it returned and metastasized, I was told, yes, this is terminal, but with new treatments, you can live with this for a long time. Now, how am I going to be strong when I don’t know how long I’ll have to be living this way? I’m sure I could do it for a few months, suck in the pain and fear, settle my affairs and put on a brave front. But, if I’m going to be terminal for twenty years, that makes it a lot more difficult.

How do I figure out what future to plan for? Do I just go on like before? How do I incorporate having stage IV cancer with planning for retirement, grandchildren, long wanted trips? What do I tell myself? Then, how do I prepare for the end? I mean, my planning will be much different if I’m going to die in a few years as opposed to a couple of decades. Sure, anyone can die tomorrow, but when you have cancer, the reality of it smacks you in the face every minute of every day.

One more bit of grumbling before I stop my ranting for today. Recently I’ve been paying more attention to tributes to people who have died of cancer. Almost always you read how this person was strong, fought a brave battle, never complained and lived each day to the fullest, right up to the end. I’ve known some people like that. And yes, like everyone else I have admired them for it. However, sometimes I feel it is just one more impossible standard to try to live up to. I’m not saying that we should memorialize our loved ones and friends by including that they were sometimes whiny, complaining, and demanding as I’m sure everyone gets to be one time or another when fighting this disease. I just wish that I didn’t make myself feel like I have to be as stoic, strong, and wonderful as I think the others were. And yes, I know this is of my own making, the quiet hero we all would like to see ourselves as. I guess I’m not going to be that quiet hero, I don’t think it is in my nature. But hopefully I can still inspire those of you reading this to continue to love, laugh and cry with me and to appreciate every day you can take a breath in and breathe it back out.

What happens when the evolving train wreck you have been watching turns out to be the one you are riding on?

Last Tuesday was typical of our chaotic existence. My adult son had just left to go home after coming in for a few days to visit. As most mothers do, I shed a few tears as he drove off. Then the dam burst and I began to sob, missing him terribly. Our 17 year old cat had been peeing blood over the weekend and we needed to take her to the vet as a walk in. Doug left work to take her as I had to wait for the furnace service guy to come and give us an estimate to re-insulate our heating ducts. I had planned on going into work for a few hours, but by the time I settled the cat back into the house, taken the dogs out, mostly recovered from my bout of missing my son, and finally gotten a return call from UNC hospitals about a mix up in my next two appointments, it was just about the end of the day and I just wasn’t feeling up to it. Though I really had been staying pretty calm in the midst of what was all going on with us these last months, that evening the straw finally broke the camel’s back. Several months ago I splurged and bought myself an iPhone. It become my best friend as it allowed me to check email, facebook, read news and books and I was addicted to a certain solitaire game. Because I had a history of accidents, usually involving water, with previous cell phones, I had been extra careful with this one. I use a waterproof container when I am at the dock, and since I use it to entertain myself when I am seated for a long period of time, have taken to keeping the toilet seat cover down so an accidental dropping won’t turn into a disaster. Well, between the time I lifted the seat cover and prepared to sit myself down, my precious cell phone leaped out of my hands and directly into the toilet. Shouting one of the terms for what I was planning to actually drop into the toilet, I made quick to fish it out, removed it from its cover and did the best to clean the outside hoping that it might still work. I continued shout words of frustration as I stormed into the kitchen to, thanks to some recent posts by friends on facebook, place the phone into a bag of uncooked rice. Later on my husband comes into the bedroom holding my little dog Mattie, who was nearly catatonic from the emotional upset that had permeated our usually calm house. After apologizing profusely and telling her that I was not angry at her, I hugged her and let her cuddle up on my lap as I lay in bed, my phone hopefully drying out in the rice. I was somewhat aware of an impending train wreck, but at the moment thought I was safely on the station platform hoping for a near miss.

Just as we were ready to turn off the lights and go to sleep Doug remembered that he had forgotten to go to my daughter’s apartment to feed her cats as she was away for the week. He got back around 45 minutes later and we finally fell asleep. Usually Doug gets up before 6 am and takes the dogs out and feeds everyone. However, when our oldest dog came to my side of the bed whining, I realized it was after 7 am and Doug was still sound asleep. Knowing that she doesn’t usually make demands and won’t wet inside even if she is desperate to go, I got up and took her out. When I got back Doug was up and about ready to take the other two out and feed everyone. I was sitting on the couch trying to get a piece of rice that had wedged itself inside the docking port of my iPhone and hoping that there was no permanent damage to my precious. All of the sudden Doug begins to curse and tells he me thinks he accidently gave little 12lb Rosie 50lb Trooper’s medicine. Both dogs are on thyroid medicine, Rosie .1 mg and Trooper .5 mg. We usually give them their medicines in order, Trooper first, with a dollop of butter. Since it had become so routine, we don’t normally have to think too hard and this time his hand went to Rosie first instead of Trooper. We both got upset and I tried to call the vet but they were not open yet. I called the number I have always had programmed into my phones for poison control but I got some odd recording telling me to press 1 and a text will be sent to me with some information about this phone number. I was getting frustrated and when the text came it stated that there will be a $9.95 charge for the service. I was about to scream. That was when I realized both Doug and I were not only on the front seat of the train as it barreled towards something solid and inflexible, we were the train wreck.

How much stress can two people take? When Doug’s mother passed away early last year after slowly fading away from Alzheimer’s, we thought we’d have a reprieve from stress for a while. Though he visits to her several times a week had fit nicely into our other routines, the last few months he was going every day and near the end twice every day to coax a few spoons full of food into her. Starting that summer we were under the rising cloud of possible layoffs at his place of employment. We had hoped to purchase a new car and I wanted to do some needed remodeling and repair work on the house. That was put off until we were more sure that his job wouldn’t be cut. In November we rescued a little pregnant and starving dog from the shelter and spent a lot of time and money getting her well, which, though stressful, was also very rewarding. By February the job situation had still not resolved and Doug was commuting an extra 20 minutes each way to a satellite office to work on a temporary project until a new contract could be signed that might include work for him at his original office. His new job also involved travel and he was scheduled to go to Virginia for a few days. Four days before he was to leave for that trip he woke up with a pounding in his chest and an elevated heart rate. A scary trip to the ER revealed he had gone into Atrial Fibrillation and he was now a heart patient. The local cardiologist we saw seemed more than emept and we went for a consult at UNC and was referred to a cardiologist in New Bern, only an hour away as opposed to the 2 ½ hours to UNC. He was placed on a blood thinner and was getting his blood tested every three days as his level continued to go up and down like a yo-yo. As we were adjusting to this new phase on our lives, Sarah’s 1988 Volvo and our 1993 Toyota van began to fail and we now needed two cars instead of one. We found two used cars, a 2007 Prius and a 2006 Honda for what we might have spent on a new car. I gave Sarah my old car, which was only 10 years old and still running OK at 175,000 miles. Doug spent a week in 29 Palms, California for work and was scheduled for a cardioversion to shock his heart back into rhythm when he returned. All went well with the procedure and we thought we might be in for some smooth sailing after that. Four days later, as we were just finishing up our Passover Seder with just the three of us, Doug had a stroke. Though we didn’t dodge the entire bullet, we were spared the worst of it as his stroke, though not small, only affected his speech and some sensations on his right side. He was granted short term disability at 60% of his usual pay and three months family medical leave. With a lot of hard work he made steady progress and by the middle of June was able to return to work full time, and once again we thought we were back on course for our sail. As you know, that was not to be, as by the beginning of July I had learned that my cancer had returned and by the middle of July that it had metastasized to my bones. Between repeated trips to Chapel Hill, painful tests, problems with the new medications and bouts of pain in my arm and ribs, we were dancing a fine line of sanity. But we continued to feel blessed with having each other, a lovely place to live, wonderful children and family, our beloved pets around us, and a positive attitude. What we forgot to recognize was that we were not immune to stress and ours was growing daily. Though minor, the episodes last night and this morning were warnings and we had to acknowledge that and figure out how to deal with it. Unfortunately, we are stumped. My illness is not going away, and though a very long way from where the stroke originally left him, Doug still has some speech issues and is still struggling to keep the level of blood thinner in the correct range. His temporary position is nearing its end and as of yet he has not heard if any extensions of the contract will be signed. Our older pets are showing signs of age, as is the house. I haven’t been down to see my mother since the month before Doug’s stroke and our frequent trips to Chapel Hill has depleted his already low paid time off at work. In other words, the train is speeding up and we don’t know if there are any seat belts of other protection aboard.

I have been reluctant to post this type of blog as I was afraid it would sound whiney and self pitying. However, in talking to my boss, who is also a licensed family therapist, and a good friend, she assured me that if she were in my position, not only would she offer blanket invitations to everyone she knows to attend her pity party, but it would be a command performance. So after getting that validation, I may be inclined to post a few more discourses in my blog that are less than stoic and humorous.