A little frustrated (Sorry, a bit of a rant)

Last week was a bit frustrating. After I left Bob and De's I went to Dr. B's for an appointment. I actually saw J instead of Dr. B. She put me on a ketogenic diet. But the frustrating thing is that I had blood work done for the appointment, but the lab assistant never turned the blood work over to be tested. So I didn't have the results needed for that appointment. Since I was going to see Dr. C the following morning I decided to ask Dr. B for the results to take to him, and since there was no blood work for Dr. B's appointment, I wouldn't have blood work for Dr. C either. Two wasted appointments. I was not happy. Dr. C was OK with it, but had me go to the lab at St. Joe's to get the needed blood work. While I was waiting for the lab assistant, I googled the ketogenic diet and found out that it can cause hyponatremia and prolong the QT interval. I had second thoughts about doing it, but it is only for one week. I'll bring it up to J when I go in on Tuesday. I called Dr B's office on Thursday hoping the lab results would be found, but the person who answered the phone didn't know anything about it and said that they probably wouldn't know anything until Saturday. If they didn't have the results then I'd need to go in to get the blood work  done on Saturday and have another appointment on Tuesday. I had plans to go to a concert in Huntsville on Saturday and I had to give up on that. On Saturday morning I called Dr. B's again and was told that the results had been found, but the samples weren't run until the 26th, twelve days after the blood was drawn. All of my results were high because the blood waited around so long. I had to go get the blood redrawn. So because the lab assistant was incompetent I had two wasted appointments, two extra appointments to go over the blood results, two extra blood draws and I missed the concert. For all that, I got told "Sorry". Just frustrating. The lab should at least take me to lunch, but on the ketogenic diet I can't eat anything anyway. It has been a struggle to stay on the diet.

Now don't you worry your pretty little head.

The issue has been brought up by e-patient Dave about empowering patients to understand medical cost and help police for fraud. You see, the EOBs that we receive from our insurance agencies include identifying information that is helpful to them but has nothing to help the patient correlate the charge to a specific office visit, doctor, hospital visit, medication, etc. In other words, we are spoon fed the amount we owe for any service long after the service has been rendered. We have no axis to determine if the charge is substantiated or accurate. We can't even call a pharmacy and inquire the cost of a medication. Yet, we are increasingly called upon to help hold down the costs of medical care. Can someone please tell me how we can do this if we are slaves to the process, and not stakeholders? If you want us to participate tear down the dividing wall and let us join in on the information. Quit hiding our records from us with your ambiguous codes and references. Tell us exactly what you are charging us for and tell us up front, not a few months after the fact.

Bob and I talked a lot this weekend.

In a way it is heady that he respects my views. After all, he is the doctor and I am the patient, but he is the patient now and I am the one who fairly successfully ravaged the storm of cancer. I still feel woefully inadequate to the task, though I would never consider denying my friend of my viewpoint. I want him to watch 50/50. It is a realistic view of life as a cancer patient. And it is better because it doesn't deal with breast cancer. It talks about a rare cancer. I got a common cancer for women over 40, Bob got a common cancer for men over 60. It all sucks. Chemo sucks, there is nothing nice to say about it. WE HATE CANCER!!!!!!!!! just doesn't do it. CANCER SUCKS!!!!!!! doesn't do it either, even though both are true. We do hate that we have cancer and it sucks. But it still doesn't remove the fact that we have cancer. Even when we are in remission and have no overt sign of cancer, we still have cancer. I have no doubt that Bob will go into remission, I really expect that he will die with his disease, not from it, but he will always have to fight it now. I don't welcome anyone to this club.

Orienting Light

I am at Bob and De's and I love being here. I helped De deep clean the upstairs area of the cabin today and set the beans to soaking. But I won't pretend that even as used to staying here as I am that the darkness is disorienting. De has lights that help. I have plugged in the bathroom light and the light on the stove and the light to the downstairs where Bob and De live is illuminated. It helps. But I have come to understand that Bob needs illumination to the patient side of receiving treatment. He gets the doctor side of it. The patient side of it baffles him. He wants to go to MD Anderson. I think this is a good idea. A second opinion,even though he has a rock star doctor is  always a good idea. And Bob's family is in Houston. They do not know about his diagnosis yet. The visit could serve a dual purpose. Still, De is worried that Bob will present as a difficult patient. We should all appear so difficult. The doctor breathes it and I live it. If I had the knowledge to not appear a fool when I questioned that would be lovely. Bob has that knowledge. It does not serve well with cancer. He asks the questions they don't want to answer. He has the knowledge to know if they are hedging the answer. The answer is to shoot strait from the hip with him. And he seems to be processing the answers well. He has a lot of questions about the emotional effects of diagnosis and treatment. I have the answers, but they change person to person. I wish there as a CLL.org like there is a breastcancer.org.  He needs support like I needed it.

Blogger Chili Cook-Off

The Blogger Chili-Cook-Off idea didn't gain much traction, but maybe after yesterday's news that's a better idea. I did buy ingredients to cook some chili when I get to Bob and De's tomorrow. But since it's going to be made from scratch, it will take longer than a day to do. I have to soak those beans. So hopefully on Monday I will have a picture of my friends enjoying a bowl to share with you.

True Love Does

They called us Mutt and Jeff, we called ourselves David and Jonathan. I never knew who was Mutt or who was Jeff, but it became understood that I was David and she was Jonathan, it wasn't my choice, I would have chosen the other way around. But she said that I was flawed, but pure like David. She was a loyal soldier. I could see her argument.  If you wanted one then look for the other. We were always together, in school, at pioneer girls, at church, on the playground. Joined at the hip soul twins, BFF's forever, whatever, De was mine and I was her's. I even defined the spelling of her name. She was Dee or dee until I turned her into De. I love her more than I can tell you, more than there are words to describe. As much as everyone says we are the same, I can love her when I can't love me. She is my BFF for life. And since we both have eternal life that is a very long time.

When I was told I had cancer, she was the first personal call I made. Her response was "What do you need from me, what can I do?" "Drive me to chemo" and she did, all 16 sessions. She sat with me as I had poison, mustard gas, poured into my veins. She took me home and made sure that their was someone available to me.

Today, I was online. Facebook is always up, I got a message. "Did you get my message?"  My answer "No, did Stephanie have a good birthday?" Stephanie spent her birthday with her father. She doesn't know the news that I'm going to tell you. She won't know until she and her brother's family return from their holiday. De's next words were shattering..."Bob was diagnosed with leukemia on Thursday."(                           long area of white space                                                          ) "What?" Bob has leukemia. I can't breathe...I must breathe for De....So my response was What? What can I do? Can I clean your house? Can I cook you meals? Can I walk your dogs? What can I do...love talks though actions. Because boy, do I love Bob... but I love his wife even more and that isn't creepy. Sometimes I think that we share a soul if not a spirit. She is me and I am she. I will fight to the death for her. They are facing the awful diagnosis...Bob has leukemia. BOB HAS LEUKEMIA. BOB HAS LEUKEMIA!!!!!!! I take a breath and remember, then I calm myself...Bob has leukemia...I need to find out what he and De need. I need to be flexible for them...Oh God, Bob has leukemia!!!! Please heal him.

Blogger Chili Cook-Off Anyone?

I was just lurking over at Solitary Diner's and was challenged to a Blogger Chili Cook-Off by Rick. As cold as it everywhere, what a great idea. I'm in, anyone else want to join? Check out both Solitary Diner's and Rick's blogs. Very good reads.

In the center of my soul

" I believe that tears are a gift from God because they help us live without any facades. We are seldom more real and truthful than in the moments when our tears flow. Those who can cry live more intensively. Those who can cry stand in the middle of life. They stand in the middle of their own pain and in the middle of their own happiness.

However, the uncried tears — they lie deep in the stomach, give us headaches or even depression. Those who swallow their own tears do not do themselves any favors. This is a good piece of advice that is even handed out by health care professionals.

However, if I need to cry my eyes out, I need something more than the good advice that crying is healthy. I need someone who sympathizes and who does not find my tears embarrassing. Someone whom I can cry in front of.

Working in this ministry with its high volume of work, heavy personal load, and the level of poverty we see sometimes causes anxiety and agony as we minister to the poor. Sometimes we feel we need to do more to intervene in the harsh conditions children are living in, but we find the magnitude of the problem is so big. Our interventions for the registered children seem like a drop of fresh water in the sea. How can we not cry sometimes?

Our tears are a gift from God. We should not swallow them; we should let them flow when it is time so that we remain vivid and healthy in body and soul.

Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them. — Psalm 126:6, NIV

Prayer: Father in heaven, even though our hearts may be heavy with grief, we will praise Your holy name. You are an awesome God; You spoke and the world was created. We give You all glory and honor for who You are, and we worship You alone. Amen!"

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Courtesy of Compassion International: http://blog.compassion.com/living-authentically-tears/#ixzz1k0tj1uY6  Authored by Lutufyo Kaminyoge

This was the impromptu sermon I got this morning when I went to Compassion International's site to send a birthday gift to Estefani, and let me tell you it was spot on.  Yesterday I read a  post from a blogger that I enjoy. She wrote of a gift that her parents had given her.   It was beautiful, and I wish that I could say that I too had given my children that gift. But I fear that I didn't. I fear I didn't because the gift is something that I don't possess, and the lack of it is one of the greatest sources of pain in my life.  While I was joyful for her and glad that she appreciates the true value of the gift, it highlighted that ache in the center of my soul. It left me in tears and crying out to God. Then afterwards I felt ashamed that I cry at God for not having that gift and I don't appreciate the many gifts that He has blessed me with. No wonder I don't have that, I don't appreciate what I do have. But this is the rend, the tear, the wound that breeds all my depression and insecurity. So this morning while I was sending a gift, God sent one to me. He gave me the words above to let me know that my tears are not evil, but a way to keep myself healthy.

If you are not familiar with Compassion International, please go over to www.compassion.com and check this wonderful charity out, and consider sponsoring a child in need.

The Old Neighborhood

Lizzie needed her rain boots that she left at home in her closet. She also needed a casserole for a dish she wants to try. I needed to see her so I arranged to pick her up after her shift at work. The restaurant she works at is in the neighborhood that I grew up in. Being in a major metropolitan area, it really looks very different than when I was a teenager here. With both my parents having been long deceased, I almost never come here. But as much as the surface has changed, the structure remains the same. Driving down North Druid Hills road I passed a homeless guy standing on a corner. It was Bud. It made me sad to see him. When we were growing up Bud was a sweet and intelligent child, blonde hair and huge blue eyes. He looked like the kids you would see in advertisements. He knew the names of the constellations and where to find them in the sky during which month. He knew the phases of the moon and was hugely interested in eclipses and meteor showers. He read Richards Almanac and the Whole Earth Catalog and National Geographic and stories like "My Side of the Mountain" and "Rin Tin Tin".  He had visited Costa Rico and Bolivia, and had climbed pyramids. He was probably the most interesting kid that I knew. We remained good friends until around 9th grade when Bud began to do strange things. He took up the habit of chirping like a cricket at the most annoying times. He would just suddenly pinch people for no reason and began talking about strange topics. It didn't take long for him to loose most of his friends. He was a good deal smarter than I was, so we weren't in any of the same classes. It was easy to move on to other friends. He graduated with honors, but his mother declined making him the Valedictorian for the class. She said that he couldn't stand the pressure. Looking back on it, she was probably right. He got into Georgia Tech, but by the middle of the first semester of college, I heard he'd had a mental break and was in the hospital. Thinking about it now, he probably was suffering from Schizophrenia or Tourettes or something. We knew very little about mental illness back then, as teenagers we wouldn't have known that our friend was sick, not seeking attention in idiot ways. So now when I come back to Brookhaven, I see him wandering the streets. He chooses to be homeless, it's not that he has to be. His mother still has the house he grew up in. She will let him in, but in his sick way of thinking, he prefers the street. I saw him when I was walking the 3Day. I tried to approach him, but he panicked. It was clear that he didn't want contact with anyone, I'd done a bad thing. So now when I see him I try to not make eye contact. A few of our other classmates have seen him too. They say that he talks to no one. They say that his mother occasionally talks him into going into the hospital, but he never stays. After yesterday, seeing him there on the corner was like a punch in the stomach. How do we all get were we are? Is it that we didn't try? Do we really make our own life or do we just drift in the current of life?

Snow

Not the bad kind that wants to accumulate on the roads and stay around forever. The good kind, gently falling and melting as soon as it hits. This is the kind of snow that I like. I enjoyed my morning commute watching it as I was driving in. It made me fell still and peaceful. So I have spent the morning in a reflective mood, thinking about small things. The din the morning radio show host were making over who were better drivers and parental melt downs. Had me wondering what difference it made. I know they had to have something to talk about, but sometimes I'd like to hear about something more than fluff. All parents melt down eventually. If June Cleaver had been a real person she would have had moments on that show where she wasn't all cool grace wrapped up in pearls and heels. The dirty little secret is that all parents fail. At it's best, parenthood is a tutorial in asking for forgiveness and hoping and praying that we are not going to fail so often that it is the only reaction our children remember.

With this backdrop I pulled into the parking garage and realized that there were 7 text messages on my phone. Alarmed at this, I stopped and read them immediately. The first one from a friend that I haven't seen in a while. It said "By this afternoon the divorce should be final." Whaaaaat? I didn't know that the marriage was in trouble. Apparently neither did any of our mutual friends, the other six texts were different friends asking if I knew anything about this. They were all as blindsided by the news as I was.

I got into the building and headed upstairs to my cube.  Opening my email box I had a message from one of the breast cancer sisters. "They took Becky to hospice today. They don't think she has much time." Hot tears ran down my face. I knew that she had been sick. I knew the mets were in a lot of places, but still it is so hard to face...again.

Back downstairs in the cafeteria for breakfast, I'm sitting at the table and David from strategic accounts approaches me. I have been in a few meetings with him and emailed things back and forth, but I don't know him well. He wanted to talk to me. His wife was diagnosed on Monday. Poor girl, they called and gave her the news on her cell phone while she was driving her daughter to cheer practice. Her cancer is very similar to mine, nowhere near as advanced, but er/pr-, her2nue strongly positive, lymph node involvement. She's going to the same oncology and surgical groups that I go to, different doctors in that group. I told him that her oncologist is considered the breast cancer expert in the southeast, and that a lot of the surgeons patients like her more than my surgeon. They have her on a good schedule. He was concerned because they want to do chemo before surgery and he wants the tumor gone. I explain the reasoning, but I don't think he was convinced. We talked for way longer than my break should have been. It was hard to hold the tears back after hearing about Becky. Wasn't she stage 2 when she was diagnosed? I can't remember. I don't have promises to give David, but he sees me as the promise. I am here talking to him eight years after my diagnosis. I told him I was really sorry, that I'd like to talk to his wife and I gave him my cell number for her to call. I don't know what I will say, but I know that I can't be silent.

I sat quietly in my cube all morning, glad that there wasn't much to be done. I can barely focus on the Excel workbook open on my screen. Stormy stopped by and asked if I would like to go to lunch, but before we could leave, she got pulled into an impromptu meeting. I walked back down to the cafeteria, but the offerings didn't appeal to me. Instead I went to Sweet Tomatoes and had chili and salad. The woman in the booth diagonal to the table I'm at is bald and obviously weak. I don't know what kind of cancer she has, but I do know how she feels. Tears for Becky slide down my cheek. I am embarrassed by my lack of emotional control. I feel overwhelmed by all this.

Back in my cube I get a cry for help from Evelyn. She needs to create a survey and doesn't know the software. I have used it, but it was three years ago. I don't know it well. We spend an hour figuring it out and getting the survey on the intranet. She and I go back to the cafeteria for break. While getting the napkins and silverware I notice Julia sitting at one to the tables in the darkened area. She looked very bad. She is usually all smiles and cheer, but today there is definitely something wrong. Evelyn and I go and sit with her. She told me that she had an MRI on Monday and they found something on her spleen. She's going on the 24th to get a biopsy. She's scared and she should be. The type of lymphoma that she had can easily spread to the spleen.

Now I'm sitting here and the contemplations that I had in the morning driving in seem like trivial popcorn compared to the news the day dumped on me. I want to love these people, to comfort them. But I feel so incredibly incapable of the task. I have nothing to give them other than my prayers and concern. Some times I wonder why we fight so hard to cling to life. I guess the only thing we can do is to be there for each other.

I have no excuse

I haven't been posting much and there really is no reason why other than I'm just bored with the sound of my own voice. I have been reading many blogs and even leaving a few comments, but just not posting my thoughts here.

The holidays came and went. They really were pretty good. Lizzie and I spent Thanksgiving together. We spent Christmas with Matt and Nina and the boys.

Clifton

Tony

We had a pretty had a good time. Cocoa Beach was warm and that was very different than the snow we had last year. I also missed the candlelight service and Beverly's party, but there will be many years for that. Tony was in a cast after breaking his leg in a playground accident. So there was no going to the beach. But we did have fun playing putt putt with Clifton.

Jack

We spent the new year with Tim and Jenn and Jack. We went for dinner and then left the next afternoon. Jack is quite a funny fellow. If I could figure out how to upload Youtube videos, I would upload this one for you but here is a link. He is so amazingly like his father that it is watching the same child grow up in two generations. We came back so early because Lizzie wanted to party with her friends and I needed to be on for the video ministry on Sunday. I'm actually grateful that I did come back because I was exhausted and working on a good size head cold. Having Monday off work allowed me to sleep most of it off before returning to work.

Work has been interesting because on returning from the holidays I have found out that two of my very good friends are retiring and I strongly suspect that a third will before the end of the year. While I'm glad for them, the lunch table is suddenly growing very small.

I had two doctor appointments before Christmas. The first was with my oncologist. Everything looked good.  Call after Christmas for the CA 27-29 results. Come back in six months. Only when I called back I found out that for some reason the CA 27-29 hadn't been run. We decided to let it ride until June when I go back in. Having made that decision, I am now nervous about it. Silly, I know. Most oncologists don't even run the test unless there is active tumor they are watching. Still, now it feels like I'm not being monitored. I also saw my sleep specialist. He was thrilled with the weight loss and cautioned me that we might need to redo the titration study because of it. He explained that sleep apnea isn't a disease of obesity, but obesity greatly worsens and complicates it. He said that if I stop getting the amazing results that I have gotten with my CPAP to call and we can redo the study, which is fine because my insurance will pay for me to have as many as are necessary. They limit mild and moderate sleep apnea, but I fall well below any of the standards for that.

I will have my first appointment of the year at Dr. B's and then I will see Dr. Cn later this month. It's kind of weird. As much as I didn't want to go on FMLA, it is rather empowering when I tell my supervisor about needing time off. Before I was almost apologetic about it. When I told her last week, I could see the hackles raise, but then she had to push it back. She legally can't say or do a thing about the appointments. In all reality there is no reason to object. I do go to a lot of appointments, but I always work a full week or use discretionary time to make it up. It's just a control issue to spaz out about it.

I took Lizzie back to the dorm today. She was glad to get back. I remember how she feels. I used to hate breaks when I was in college. I would go home for a month or more and it felt like my life was on hold. All of my friends and family would be going to work and doing what they do and I was just hanging out waiting for the next semester to begin. We went by the Fiesta Farmers Market and picked up food for her. She has enough for about a month, and we ate at Waffle House on campus, then it was time for me to leave a very happy young woman.

So, this is where I am at. And even though it is a bit of a ramble, it feels good to be caught up.