I have no idea where to begin, so I’m just going start with the first thing that comes to mind and swing from there.

Thursday we were all home because of the ice. My brother called that he had an appointment with our gastro doctor the next day and he was pretty sure he wouldn’t be able to make it out because of heavy icing. He knew my next appointment was in mid-February with this doctor, so he said if I could make it to the appointment, we could just trade. It takes months to get in to see this doctor and since both of us are on tight 6-month cycles for colonoscopies, we can’t afford to miss an office appointment, which the scheduling people require before they’ll set up a colonoscopy.  I wasn’t sure we would be able to make it Friday morning either, so I told him we’d wait and see how it looked Friday morning.  

Meanwhile my mom was scheduled for Lifeline screening at 9 Friday morning, so I was trying to figure out if that was postponed and make sure we notified them so she could get her money back otherwise. Charlie thought we should try to make it to the gastro appointment, so he put chains on the vehicle. We left nearly two hours before the appointment, for what is typically a 45 minute drive. Though we have never taken Shayley with us to these doctors appointments for the past 22 months, we decided it was better to do that than have to travel any more backroads to drop her off somewhere.

We slid down our steep driveway, getting almost crossways before the chains finally caught traction. We managed to get straightened out , but then slid the rest of the way down the driveway.  Thankfully the main roads were in good shape, except we saw a tractor trailer that had overturned, it appeared from sliding on an off ramp.  Because of the drama of the morning, we drove right past the exit we needed, and lacking a Roanoke map in the vehicle, we drove around 40 minutes, but yet Charlie dropped me off at the doctor’s office at 9:58, two minutes before the scheduled appointment.

I signed in and told the receptionist that I was there for my brother’s appointment because he was iced in. I told her we were trading appointments, and that mine was in mid-February. She asked if I called ahead to the doctor’s nurse and I told her I had not because it all just came together that morning (in retrospect I should have called ahead, but I had a scenario in my mind that I had called once to try to take my mom’s appointment with the same doctor and the nurse had told me that they make the priority decisions, so we couldn’t just do that.)  She told me to have a seat and they’d call me back to the window in a few minutes.

Charlie had dropped us off at side the door and several minutes passed before he came in. Turns out he had been helping an older couple change a flat tire. They had the same kind of vehicle as us, but their tire tool was missing. Once he came in, I stepped out to go to the bathroom and naturally they called me to the window then. Somehow he was explaining to the receptionist about the tire change.

The waiting room was full of people as it wasn’t icy in the Valley and there were multiple doctors in the office. In a little bit the scheduling nurse, not the receptionist, called me to the window. She told me that I couldn’t just show up and see the doctor and that I should have called ahead. I told her that it came together that morning and that we thought they would appreciate having a patient in that slot rather not. She looked at the clock and said it’s 10:15 and his appointment was at 10. I told her that I was there at 10. I asked her to tell the doctor my name and see if he wouldn’t be willing to see me. She said she didn’t have my file pulled, and I told her all I was there for was to schedule a colonoscopy. I repeated that she should tell him my name and let him decide.

When I stepped back to my seat and sat down beside Shayley, she was visibly worried and asked why I was shaking. I told her I was angry. She tried to lighten things up and make me smile. I was reviewing in my head why in the world I continue to come to this doctor’s office.

In a few minutes, she came back and called me to the window. With detectable smugness she announced that he would not see me. I asked her if she told him my name and she didn’t answer. I asked her again and she said she was not going to argue with me that I should just leave. I said, I’ll just wait to hear from him directly. She said that would only be possible at the end of the business day. I again asked her if she told him my name. She finally said she didn’t have to tell him my name. Just then someone else walked in behind her and she looked up and said to this person that I was being argumentative and wouldn’t except that I could not be seen and that she didn’t have time to deal with me. The person turned out to be her supervisor.

The supervisor asked me to step into her office. She asked me my name and I told her. She looked down on her desk and behold among 3 or 4 files laying there, mine was there! I told her that she would just have to trust me that I am not a difficult person. I told her that two years ago this doctor missed a polyp and that I had gone through stage IV colorectal cancer and this doctor had told me if I ever needed ANYTHING to let him know. I explained our plan of exchanging appointments and that we both were coming mainly to be able to schedule our colonoscopies, both of which were due in February. She looked at the computer with our appointments were notes that we both were coming to schedule colonoscopies. She asked me to wait in the waiting room and she would get back with me.

In a few minutes, she called me back in and said that the doctor would see me, but they just ask that in the future I call ahead if we need to do this. I said OK. I asked her to personally put my brother’s name in the February office appointment and print it out for me, which she kindly did.

I took my seat back in the waiting room next to Charlie and Shayley. Shayley wanted to know if I was still angry and I said kind of. I explained to her that the same person who told me to go away was going to be the same person I would have to see after seeing the doctor to schedule my colonoscopy.

Before long, they called me in. Charlie usually goes in with me, but since Shayley was along, I told him they should just continue to wait there. Everyone else in the office was so pleasant and friendly.  Usually my blood pressure is really low—but not this day!

As I waited for the doctor, I picked up a magazine on Crohn’s disease and read someone who urgently needed a bathroom and was turned away by a retail store got her state legislators to write a law forbidding that for people with any inflammatory bowel problem. Then, 20 other states, including Tennessee have passed similar laws. Good for her!!! (It said legislation is pending in Virginia.) I could SO relate to that after so many desperate stops. Turns out you need a note from your doctor to gain the bathroom access in those states, so I wrote that down to ask the doctor about.

The doctor came in shortly and was laughing about me causing a stir at the front desk. He’s a very friendly and caring doctor, and I believe very good (despite the fact that he’s missed at least two of my polyps—25% of all polyps are missed.) Ironically enough, his annoying-if-not-tragic flaw is that he’s extremely arrogant. He was so happy when he reviewed the lab work I brought with me from Duke and it didn’t include text for Vitamin D or iron. I reminded him that this was an oncologist I was seeing there, not a gastro doctor.  He reminded me that he had told me on March 27, 2008 upon finding the large cancerous polyp that I should have my entire colon removed. I told him that I repeated it opinion to every doctor and surgeon I saw before surgery, but they decided not to do that. I also reminded him, as my surgeon at Duke always says, that I have 16 more urgent worries than another cancerous polyp now. (Though mentally it’s very hard for me to compute that.)

I told him that I was there because I was due for my 6 months colonoscopy. I told him that my brother was also due for a colonoscopy and that I was also worried for him. I explained that the scheduling nurse was requiring both of us to see him for an office visit before doing the colonoscopy. He said that wouldn’t be necessary. I told him that it was her that I had royally annoyed and he said he’d take care of it.

I updated him on all the happenings since I’d last seen him (which was daily in the fall of 2008 when I was in Lewis-Gale so much.) I told him about completely chemo and about the clinical trial. I also told him about the intestinal blockage in late August. I described gastro issues I continue to have, including not being able to have dairy. He was not the least bit interested in my problems with dairy. I proudly told him that I have added lots of fiber to my diet. He promptly said that I needed to be on  low-fiber diet. I told him that everyone in the world says you’ll have better colon health if you have lots of fiber. He said I’m not the typically gal and that having had a blockage and continuing to have symptoms of a partial blockage (perhaps scar tissue, he said), means I must go to a low-fiber diet.

I trust him on that. So, now that I’ve successfully integrated lots of fiber into my diet, I now will try to extract it

So he walked out with me and sat down beside the scheduling nurse’ desk. –I flashed back then to March 20, 2008, to my last office visit with him. I had called a month before that I was passing blood. As soon as he saw me that day, he assumed the worst and set about sending me the same day for blood work and told the scheduling nurse to get me in ASAP for ultra-sound, etc. On that day, after he had walked away from the desk giving her those urgent orders, she then casually booked my colonoscopy with him for 4 weeks later. I had spoken up then and told her I thought it was urgent, and she said that’s the best she could do. He happened to walk back by and I asked him. Somehow, magically, she was then able to schedule me for the very next week.  –How could she not realize that if it was urgent that I get all the other tests ASAP that it was urgent that I get the colonoscopy?

But back to Friday’s appointment.  The doctor and I sat down next to her desk. He asked her to schedule me for some bloodwork, to schedule my colonoscopy AND to schedule my brother’s colonoscopy. She, never making eye contact with me, just said to the air, just have your brother call me and I’ll schedule it for him. As soon as the doctor walked away and was in with another patient, she said, would you prefer a Wednesday or Thursday for your colonoscopy? I said, I’ll take whichever day I can get the earliest morning appointment for (studies have shown that fewer polyps are missed with early appointments.) She said, that would be April 1. I said, well let’s ask him, maybe I’m wrong to request the morning appointment, maybe I should just take the first available. She said, well that would be the end of March anyway. Then, I asked if she would schedule my brother’s appointment, as he was overdue as well. She said, “Oh, I just realized it’s been 13 months since he was in for an office visit, so he’ll need to do an office visit first.” I said, the doctor just specifically asked you to schedule his colonoscopy now. She said, “well I’ll ask the doctor about it later, he probably didn’t realize it had been so long.” When I persisted, she said, you’re not authorized to talk about your brother with us, so I have nothing more to say.

I realize there are privacy laws. I also realize that scheduling nursings have a very difficult job—that have to be able to triage often over the phone and that there are many people with urgent needs.  But, this nurse was in need of something—training, perspective, a heart . . .

I began to wonder if the effusive kindness by the other staff members was indirect gratitude for me standing my ground with their un-pleasant co-worker.

When I got back to the waiting room, Shayley asked me if I was over my anger. I said, “No.” She wanted to know why and I told her I’d explain it on the drive.  I began to worry that the others in the waiting room might have misunderstood my insistence that the scheduling nurse tell the doctor my name. It could have sounded like I was a self-important person who thought their name reflected a position that entitled them to privilege. On the contrary, it was my story, my need and our history that I knew could be conveyed to the doctor just by hearing my name.  –Quite ironically, for years, this doctor had referred to me as “Martin’s sister,” as my brother begin going to him first.  As an inside joke that also reflects what we’ve been through, I still sign emails to my brother as “Martin’s sister.”

Am I still angry? Less so, because my brother did indeed call and get his colonoscopy appoint, also in April (though the scheduling nurse did try to cancel his office visit.) 

I guess I’m still somewhat upset though because the larger issue feels unresolved. The supervisor there did tell me they’ve just hired an additional doctor and that they’re looking for yet another one. Each doctor has their own scheduling nurse, though, so I’m not sure that will solve all the problems.

I guess this underlines a weakness or tragic flaw of mine—I have trouble asking people for things. The only time it’s easier for me is when it’s something for someone else.

It was so funny that when the doctor was examining me, he said, “You know why you’ve had to go through all of this terrible disease, because you’re such a nice person. You should fight and complain.” I assume he was just being funny, but yet I have come to believe that stress is a formidable foe to good health. Is it more stressful to let frustrations go or to fight? Hard to say for me.

In my work, I sometimes deal with people who hit my buttons—they’re arrogant, power players thinking exclusively of their own wishes and not the ideas or impacts on others now or later.  I wonder if I appeared that way to others in the waiting room Friday? And I wonder if I’m missing something about the story and needs of the few people I deal with who appear as ego-driven, name-dropping  tunnel-visionists?

So often, it seems that the loud, arrogant, anything-to-win players get what they want, while the people who work hard to make an honest living, take care of their families and be a good neighbor  are trambled under-foot.  I most often feel powerless to turn the tide—even in a doctor’s office where my name means something.

The lady with Crohn’s disease carried forward to help others with bathroom access. You can perhaps only appreciate this if you’ve had similar problems. What can I do to help with doctor access, or better-life access?

After an upset tummy last night, I stayed home from church this a.m. In search of answers, I just opened my Bible. It fell open at the 73^rd Psalm.

Psalm 73 (from the Message)

An Asaph Psalm

 ^1-5 No doubt about it! God is good— good to good people, good to the good-hearted.
   But I nearly missed it,
      missed seeing his goodness.
   I was looking the other way,
      looking up to the people
   At the top,
      envying the wicked who have it made,
   Who have nothing to worry about,
      not a care in the whole wide world.

 ^6-10 Pretentious with arrogance,
      they wear the latest fashions in violence,
   Pampered and overfed,
      decked out in silk bows of silliness.
   They jeer, using words to kill;
      they bully their way with words.
   They’re full of hot air,
      loudmouths disturbing the peace.
   People actually listen to them—can you believe it?
      Like thirsty puppies, they lap up their words.

 ^11-14 What’s going on here? Is God out to lunch?
      Nobody’s tending the store.
   The wicked get by with everything;
      they have it made, piling up riches.
   I’ve been stupid to play by the rules;
      what has it gotten me?
   A long run of bad luck, that’s what—
      a slap in the face every time I walk out the door.

 ^15-20 If I’d have given in and talked like this,
      I would have betrayed your dear children.
   Still, when I tried to figure it out,
      all I got was a splitting headache . . .
   Until I entered the sanctuary of God.
      Then I saw the whole picture:
   The slippery road you’ve put them on,
      with a final crash in a ditch of delusions.
   In the blink of an eye, disaster!
      A blind curve in the dark, and—nightmare!
   We wake up and rub our eyes….Nothing.
      There’s nothing to them. And there never was.

 ^21-24 When I was beleaguered and bitter,
      totally consumed by envy,
   I was totally ignorant, a dumb ox
      in your very presence.
   I’m still in your presence,
      but you’ve taken my hand.
   You wisely and tenderly lead me,
      and then you bless me.

 ^25-28 You’re all I want in heaven!
      You’re all I want on earth!
   When my skin sags and my bones get brittle,
      God is rock-firm and faithful.
   Look! Those who left you are falling apart!
      Deserters, they’ll never be heard from again.
   But I’m in the very presence of God—
      oh, how refreshing it is!
   I’ve made Lord God my home.
      God, I’m telling the world what you do!

Wow, the writer was frustrated with the privileged and why God allowed them to “win.” But he was hesitant to show that frustration for fear he might mistakenly lead others away from God. He realized, though, that his heart was set on the wrong things and that ultimately, all would be made right in the end.  He realized that God invites us to not be jealous or resentful, but to focus on the new life that is ours in God.

It is also a reminder to me that I can’t solve all problems and it’s foolish pride to think I might. Yet, many other verses make clear that we are not to be do-nothing, fatalists.  But I will continue to seek wisdom in case there’s one problem I can help with.

Thank you for your patience and continuing prayers,

Lydeana

Dear Friends,

 I’m really tired tonight, but wanted to update you on our day.

 We dropped Shayley off at school this a.m. then headed straight to Duke where we arrived just in time for my 11 a.m. appointment. They called me in very shortly. The research nurse checked my blood pressure and it was only 85 over 65. I asked her to check it again, and it was the same. I was pretty sure from the look on her face that it was going to be a blank trip. She had gotten my hospital records from last week, and she tucked me into a room where the doctor joined us very shortly. He said that my white count was low (1.6—why so low? I don’t know). He also said that the clinical trial vaccine that I was to get today calls upon the white blood cells to cluster in any problem areas, and they therefore could cause inflammation in my intestines, so he would be hesitant to do this vaccine right now when I’m not entirely over the trouble that hospitalized me. FORTUNATELY, the stuff they’ve prepared from my own cells to put back in me will keep quite awhile (at first the research nurse has said there was a narrow window of time to put them back in.) SO, it felt like a wasted trip today, as we simply drove back home. But atleast, there’s still hope of doing the vaccine. I’m scheduled to go back on September 15.

It’s only Tuesday and it’s kind of been that kind of week. Yesterday I was trying to put some pictures onto a CD and my laptop locked up. I shut it down and tried again, and the same thing happened. Then Outlook—my email software—would not open. I tried all the usual things—shutting down and restarting, making sure all the latest updates were installed, etc., and still nothing. Finally I looked up possible solutions, and lo and behold MS had an “automatic fix.” Unfortunately, this fix didn’t mention ahead of time that it just clears out Outlook and restarts it—removing all of your emails, contacts, etc. So, after scrambling for awhile to try to recover that, I finally remembered that I had an extra harddrive that I’d saved everything to about 6 weeks ago, so I hadn’t lost too much. BUT, when I hooked up the extra hard drive and clicked “copy files to computer” it cautioned me that something was missing. So I retraced my steps and hit synchronize—so nothing would be missing—but guess what? That meant that it replaced the surviving files on the extra drive with the EMPTY ones on the computer. I fiddled and fiddled and still couldn’t figure anyway to recover my lost emails and contacts. This slight drama continued as I tried to export Charlie’s contacts to my computer unsuccessfully.

 I was very frustrated by this loss of data, but I was not devastated as I might have been in times past. I can re-build the contact list over time. I can’t recover some of the emails, but at least I still have our recent “updates” on Charlie’s computer, and had backed up the previous ones on CD.   —But, if you’ve emailed recently the date of anything I need to know, would you email me again? I hadn’t gotten around to putting commitments on my calendar yet—not quite being used to circulating yet. 

In my cross-it-off-the-list mentality, it’s tempting to think that I’ve just wasted two days of my life. But I can’t think that. Yesterday, I got to see my two grandnephews for a little while; last night Shayley and I worked on spelling words and watched Green Acres and tonight she wanted to plan a survival food kit, which we did, and we watched America’s Funniest Videos, which she loves. Although 7/8’s of it was in the car, Charlie and I spent the day together today. And I felt inclined to take one of Shayley’s books in and give it to the research nurse who is shepherding us through this clinical trial. Charlie happened to mention to her that the photos were not “photo-shopped” to alter them—including the one with a bird sitting in his hands. We turned to that in the book, and since the picture was black and white the nurse asked what kind of bird it was. Charlie said a blue-bird. She said, “I knew it.” She lifted her hair back to reveal her earrings which were bluebirds. She went on to explain that her mom had died 16 years ago today and that her mom LOVED bluebirds. She had seen 5 bluebirds in her backyard this morning. We all looked at each other and knew it was a God-incidence.

 All I can think is that things that seem a waste to us have some larger meaning in the universe—odd puzzle pieces that fit perfectly in the Grand Scheme of things. Most times I’d like to see the whole puzzle, so I can see how it fits. But alas, if we could see the whole puzzle, it would not be faith would it?

 Thank you for continuing to pray for us and all of those around us fighting disease, awaiting test results, and praying for miracles.

 With love,

Lydeana

 We got home yesterday. I thought I would more or less pick up with chores and stuff where I left off last Friday, but have had to break in pretty slowly.

We started getting caught up with Shayley last evening. She looked a year older than she did last week. Of course she is an author now! The extra copies of her book, Lyrical Miracle: Creativity in Creation, came in a week ago, just a few hours before my woes hit. (I’ve posted a couple excerpts at 3martins.com.) If anyone  has been cornered by my mom in the past week, trying to force you to buy a copy of the book, I’m very sorry.  Clearly mom has answered a new calling, peddling books out of the trunk of her car. We do hope to do a little book-reading/book-signing with Shayley at Sweet Providence Farm/Market in a few weeks if anyone is interested, but have not set a date yet.

Tonight Shayley is at a sleep-over party with a friend, so I wanted to follow-up on my email Thursday night.  I closed with my prayer of being able to help someone, somehow. After that, I was still restless so Charlie and I and my I-V pole decided to go for a walk in the hospital hallway. It was well after 10 p.m., after the nightly med’s were distributed and most patients’ doors were closed. We passed by one other patient walking slowly with her pole and a woman with her who I’d guess to be her daughter. I watched for eye contact from the mostly-bald patient, and to my surprise she looked up and smiled. We walked on in opposite directions. After Charlie and I rounded the corner and reached the end of the hall and turned to return, our paths crossed again. This time she stopped and clearly wanted to talk. I can’t remember how the conversation began, but shortly she asked if I’d visited the beautiful chapel on our floor. Again, I can’t remember how it came up, but she told me she had lung cancer that was now in her spine. The woman with her volunteered that she’s been told she has two weeks to 4 months to live, to which the woman herself added that it’s all in God’s control. She asked if I had cancer, and I explained—with some strange sense of guilt—that had been diagnosed with stage IV colorectal cancer last year, but right now had no visible tumors. I told her if she’d like to talk more or if she’d like me to pray with her at any time I’d be glad to. She said, “How about now?” She put one arm around me and I one arm around her, and I prayed words that were not mine. I found myself thanking God for His grace and for offering it for our simple willingness to accept. I thanked Him that He was with us and that we would someday be with Him. I could see in her peaceful eyes that she was almost home.

 This makes me think of another song. This one by Gail Davies.

Someone Is Looking for Someone Like You

You say that nobody cares where you’re going,
And that your life don’t mean nothing at all.
You’ve heard the saying ‘you reap what you´re sowin,’
So plant a good seed and watch it grow tall.
Somewhere a man´s got no woman to turn to;
Somewhere a woman is lonely and blue;
Somewhere a child’s got no momma to hold her;
Someone is looking for someone like you.

You’ve said there’s no road that you care to travel;
Nothing to say that ain’t been said before.
And life’s a mystery that you can’t unravel
Well love’s the key that will open that door.

 
Think of all the time you waste complaining.
Think of all the good that could be done.
Think of all the friends you could be gaining,
If you lift your hand and help someone.

Somewhere a man´s got no woman to turn to;
Somewhere a woman is lonely and blue;
Somewhere a child’s got no momma to hold her;
Someone is looking for someone like you.

I thank God for His love and peace and provision. I thank you all for being that someone for us on this journey. And I pray that God will hold tight all those approaching home tonight.

With love,

Lydeana