The last two weeks have been a flurry of me trying to fit into a ten day period things that should have taken place over the past six months. I had my yearly mammogram (4 months late) and my bone density scan and saw my internist. The mammogram was the trouble spot. Nine years ago I had a breast cancer in the right breast. The surgeon who did the biopsy knew it was cancer and removed what he thought necessary and closed it up. When I went to see him he told me I would need some radiation and to be on a chemo pill for ten years. I had just had the open heart surgery six months before and so I called my surgeon and asked him what he thought. I actually knew the radiation was out as I had my max years ago. The tamoxifen was what I was wondering about. He told me I could not take it as it can cause blood clots and he advised me to go see the top breast concologist at The Cancer Institute of N.J. I told him that you couldn't just get in there without a doctor referring you there and even then it might be tough. He made a phone call and I got an appointment within days. They insisted I have more breast tissue removed as they didn't feel the margins were large enough so I had the second surgery. When they called telling me they found something in the breast I assumed it was the same one. It was in the other one. I went back, had more films taken and they told me they THINK it's benign. I should have another mammogram in six months. You THINK it's benign? Are you kidding me? Needless to say I need to follow up on this but I am dealing with a few other problems in the meantime......
For several years I have been on a blood thinner. My doctor won't allow me to take the generic as I formed a blood clot on it so I get the name brand but pay generic price. When I obtained the doctor's override I was told it was good as long a I was on the drug. My last shipment arrived and it was over $100 more. I immediately called them and Express Scripts told me my husband's company had changed their benefits. That seemed quite odd to me, it was not a new year. I even spoke to a supervisor who told me that. I waited and called back a few weeks later to be told that I was given wrong information and all I had to do was fill out a form with the information and send it back to them, which I did. I received a letter of denial so I called again and was told that my doctor needed to submit a letter. By the time they accepted my doctor's letter two months had passed. I never paid the copay because I was told that I would only owe the lesser amount as the original authorization was still good. Talk about a run around.......Now I am STILL waiting for them to credit the account and in the meantime they told me they won't send me my other meds even though yes, they agree, the mistake was their's in the first place. Does this make any sense at all?
As though that weren't enough.....I take an expensive medicine for my pulmonary hypertension. This was approved and I have been on such medicine for nearly two years. I got a letter last week that they are declining to pay for this medicine any longer. I guess they would rather pay for a lung transplant up the road, that makes sense, right? Express Scripts is horrible. We have looked at websites of complaints. How does this company get away with this? My PH specialist has called twice already but will have to take time from treating his patients to call again. What utter nonsense. I cannot tell you the countless hours I have spent on the phone with this company. Each time I call I get a different story.
Last Saturday was our anniversary. After a stressful week we were determined to celebrate. We went down to one of the beaches with a big boardwalk. There was a huge sandcastle to see, we enjoyed watching the kiddie rides which I would have enjoyed going on as well. We went to a place called Martell's Tiki Bar but it's a restaurant too. We had some good food. I had a Casesar salad with the most delicious crab meat on top. We had a nice walk along the boardwalk. They have replaced the boards with TREK pvc stuff. This absolutely kills my lower back to walk on. I have to limit how far I can go. Parking Labor Day weekend was a nightmare. We had to park at the end of the boardwalk $3 an hour. Rob of course had to drop me off and pick me up closer to the places we wanted to go.
I look back at my eleven years with Rob. I can only say that I thank God everyday for someone who is patient, compassionate and loving through all I have gone through. I don't think most people can imagine what it's like to watch their spouse on a ventilator in ICU. He's seen me in the worst possible circumstances and had to be called in the wee hours of the morning when I've had a crisis. That takes a lot out of a person, especially one who has to be at work each day and has the financial burden of supporting a family when the two incomes ended. It's been so very hard for him yet NEVER have I heard one complaint. Not when I threw a fit over something insignificant because they wouldn't let me leave the hospital or when after waiting days to eat I was given a meal I didn't want and nearly had a meltdown. He just goes with the flow.
It's nearly 5 a.m. Rob gets up in half an hour to go to work. I miss him when he's gone but at least it's just a 4 day workweek for him this week. Somedays I feel guilty. Like I am not carrying my share of the load. I never wanted to stop working. I miss my coworkers and more importantly, my paycheck. It is what it is. There is absolutely no way I could work now with all that happens to me. My friend has a motto" Don't cry because it's over, smile because it happened." I guess when you have survived cancer for thirty years that has to be enough. All the things wrong now are because of the treatment that helped me survive. I can't wish that treatment away or regret it. It's given me all this extra time and I hope to have even more. Most of all, I got to watch my baby grow up. He was only 3 when I initially got sick. He's a man now.