Faithfully Fighting

I know it's only been two days and I'm posting again!! It's all in the timing.  I knew as soon as I posted the last one something would come up I needed to let every one know. 

The first thing I want to let you know is, I never said I was going to make regular installments of the new book.  That was only a page and a half of a 10 page chapter.  Don't get fussy, but I do not have any intension of giving you more.  You'll just have to wait, and nag, me into working on the book.

The other thing is, I have developed another infection.  Seems like 8 days after chemo is the magic number.  Luckily I think we caught it in time to do oral antibiotics instead of IV.  I saw the plastic surgeon today and this Thursday, 7/31, I'm scheduled for a minor surgical procedure to remove the ruptured implant.  We are all hoping that this will stop the infections from recurring and I can move on in a more normal lifestyle (stop the chemo/antibiotic roller coaster).

I'll appreciate your prayers that day, remembering how much I hate being put to sleep.  Keep up the good work, I Love you All!!

Lynn

Honestly, I’m tired of talking about cancer.  Tired of the emotions and the physical stuff and the . . . .whatever else.  I know I started this blog to keep everyone I love informed, but I think you are getting a little tired of reading about the craziness in silly old Lynn’s life too.  So we are switching gears today.

Many of you know I’m a writer.  It’s what I love and I’m ok at it.  My job is writing technical stuff – sometimes, and my hobby (other than knitting shawls) is writing novels.  Now, one book does not make one a novelist (especially a little 1-2 day story), but I have been story teller all my life.  I used to make up stuff that people never knew was real or not (Mom, Dad I would have never done that as a teenager – I just want you to know).  One time I told a group of 5^th graders, on a field trip to Antietam Battlefield, a story about two brothers fighting each other on “Bloody Lane” that they actually listened to enthralled.  I was making the entire story up as we walked along, using information I saw on the memorial posts to keep the facts correct.  I finally fessed up on the bus ride home that it could have happened (because my facts were right), but that I was winging it.  Now granted fooling a handful of 10-11 year olds isn’t too hard and writing an entire book is a different story, but if you take the attitude that you are writing for yourself and not an audience (at first) then things can flow.

Having said that, things are not really flowing right now.  My second book, which I’ve been not-so-diligently working on for over 2 years is hanging on my head.  I have the entire story outlined.  I have about 3 chapters written.  I can see the entire package in my head, but I haven’t been hitting the keyboard.  I don’t have a good excuse.  I have more spare time on my hands than I ever had the first book.  Jessica was a teenager with practices and a social life, Bobby wasn’t always well-so I was taking him here and there.  I can remember sitting in the back seat of the car with a notebook, while we traveled to family and diligently scribbling 5-6 pages.  I don’t know where my love of writing has gone, but I will find it again.  So, in order to inspire me to continue I am posting the beginning of the book.

Please remember it is first draft and these paragraphs will probably be re-worked many times before I’m satisfied.  But in order for me to get motivated, I’m embarrassing myself into sharing.  It might read a little confusing, because you don’t know the characters or the setting, but those of you who have read the first book may know that this one is about a character in the first book:

 Sometimes there are people, or places or times in our lives that follow us around forever.  They can be good or they can be bad, but they latch on to something inside of us and stay.  When a man is strong he often thinks he will be strong all his life.  When a woman is beautiful she may believe she will stay that way.  Very often neither of those physical attributes last as long as the person, but when a thing grabs your heart it is the hardest thing to fade, even when you want it to go away. Jacob Scott was a good hearted man.  He’d grown from a dreamy, tow headed, strapping young boy to a tall handsome strong young man in the West Virginia hills.  He loved to hunt and fish and just to be part of everything around him.  When Jacob graduated from high school in 1966 the world around him was starting to rock with turmoil, but the West Virginia hills were surviving as usual, isolated, harsh and wild.  He didn’t have vision.  He knew what vision was because his younger sister, Barbara Jean, was a driven person.  She was driven by dreams, and passion.  She saw her future laid out in front of her and she choose each of her steps in the single most direct path to reach her goals.  Barbara Jean was almost three years his junior, but her drive and perseverance superseded his understanding.  Jacob was a young man like many young men who looked to the future much like he saw the present, as an opportunity to live life.             

 Jacob’s father, Lester Scott, was a hard working and deep loving man.  He spoke softly and with wisdom.  Jacob looked like his father, long and fair with shocking blue eyes. Lester Scott ran the one store in the small community of Stony Hollow. It was part feed store, part grocery, part hardware with a little fabric supply and fishing supply thrown in.  It was also the community gathering place and source of all information for the town of Stony Hollow.  Jacob spent many hours helping his father in the store.  He stocked shelves and worked the register.  He could tell you how many sacks of corn feed came in the last shipment as well as what kind of needles Bessie Todd used for her shawl knitting.  He knew who had accounts and how much most folks had on account at any one time.  Being his father’s son he would never have shared the fact that Buster Shares hadn’t paid on his account in 3 months, because that wouldn’t be right when a man had lost his wife 5 months ago. Jacob knew he should be grateful he didn’t have to go to the local coal mines for work, and that he had the freedom to take an afternoon for fishing, once in a while.  But the store felt kind of like a Sunday shirt to Jacob.  The stiff collar felt too tight around his throat and the material wasn’t worn smooth and comfortable.  The store held to tight to him.            

Young men all over have energy they don’t know how to hold.  They find all kinds of ways that energy can get let loose.  Some paths go fast and hard.  Some paths are bumpy.  Some lead to wealth and leadership.  That fall in 1966 Jacob was trying to find a place for his energy when he and a friend went to town in his beat up truck.  They stopped at the small bar and visited with friendly folks as they drank a long neck beer.   One of those friendly folks was the local army recruiter.  Sarge, as most folks called him, visited the most popular bar that the young men in town frequented.  He wasn’t two much of a drinker, but Sarge sure could talk up a storm.  The young men liked to hear his stories, especially after he’d bought them a beer or two.  Sarge had great stories of wild women, raucous parties, and great buddies.  He also talked about seeing far away placed with exotic women. Before Jacob really understood what had happened he wasn’t at the bar any longer.  He was in Sarge’s small office signing his name.  He felt excited and confident about his decision to visit interesting places and see the world, until he crested the hill and drove into Stony Hollow.  He wasn’t sure if it was the beer wearing completely off or if it was the vision of his mother’s face, but his stomach grew cold and he had to pull over to throw up.           

 Margaret Marie Scott was a lovely strong woman of West Virginia.  She kept her long chestnut hair tied tightly back at the nap of her neck.  Her large brown eyes were expressively gentle and framed by coal back lashes.  Everyone knew she was a woman of great faith.  She had been just 18 years old when Jacob had been born, so the day he came to tell her he was leaving for the Army she was not quite 37 years old.  Still lovely, especially to her dear husband, Margaret felt suddenly extremely old.  The small community was pretty isolated, but not so isolated that they didn’t know about the war going on in Southeast Asia.  Margaret knew Jacob was excited about the travel and adventure he thought was ahead of him, but she knew that a strong, work hard, West Virginia boy that was a cracker jack shot with a rifle would end up fighting far away from home.  Her heart began to bleed the day he came home with his enlistment papers, and she was afraid it would bleed forever.  She started praying even harder for her son, who she’d been praying for since the day she knew he was inside her.           

As Margaret’s reaction was painful and frightened, Lester Scott’s reaction was violent.  Jacob couldn’t remember ever hearing his father shout out in anger.  He banged his fists on the large oak kitchen table.  Lester Scott had faced a war.  He had caught the end of WWII in Europe.  He had seen men die, had held them as they died.  He had survived by shear luck and hadn’t even wanted to go back to his hometown in Pennsylvania.  He had instead come to West Virginia with his fellow survivor buddy.  That’s were he had met Margaret Scott, only 15 years old at the time, and had stayed.  He never thought he would have to send his son to fight for his country.  After all wasn’t his war the war to end all wars?  He had been watching the news of Vietnam, and he knew they were shading it as a small conflict, but he saw it for what it was, a place to send young men to die far from their homes.  Lester argued with Jacob late into the night that night.  He insisted the recruiter had tricked him, gotten him drunk and made him sign the papers.  He told Jacob they were going back in the morning and getting him out of the obligation.  Lester shouted, Margaret cried and Barbara Jean hid in her room with her arms wrapped around her legs tightly, crying silently.  Jacob stood his ground through the entire scene.  He’d made up his mind, he wasn’t afraid of a fight.  He was a good shot and he wanted to make something of himself.  Margaret cried, Lester shouted, and Jacob stood his ground. At the end of the discussion Lester stood from the table and walked over to where his son was sitting.  Jacob rose from the table beside his father.  Man to man, eye to eye, they stood looking at each other.  Finally Lester held out his hand to his son. “Recon, if you gotta be a man this way I’ll have to shake your hand like I would a man’s.”  Lester said, his voice choking with emotion.  Jacob reached out and shook his father’s hand firmly.  Margaret ran up and threw her arms around her son. Six weeks later Jacob found himself on a bus, leaving West Virginia for the first time in his life.  The towering young man felt small and strange as the bus traveled south.

I have to relate a short story.  Something touched me today.  I’ve been doing home IVs of antibiotics for the last week.  Home Health Care came in and showed me how to do them and I’ve been hooking myself up every day around 10:00 and waiting about 2-1/2 hours for the medicine to finish dripping into my veins.  Now those of you who are not familiar with the “balls” of medicine they send you to do this it is very different than the bags they hang at the hospital.  They send these hard balls, about the size of a softball, that I have to keep in the refrigerator.  I take one out about 6:00 in the morning so it will warm up (turning my blood to refrigerator temperature would be mighty uncomfortable, I think).  I have a direct line inserted into my medi-port (by the home health nurse) that I can screw the medicine into and open the clamps for the drip.  Before I do that I have to use a saline wash to clear the line, then plug in the medicine for 2-1/2 hours, then after it’s done I do another saline wash and heprin to keep the line clear of clots for the next day.  There are other steps involved, using alcohol swabs and priming stuff, but basically that’s it.  You don’t have to hang the medicine ball, you can walk around with it in your hand or lay it on your lap and take a nap.  I was very nervous the first couple of times, but I only have two more balls left and I’m pretty used to it now.

A couple of days ago the nurse came in and drew blood for a “trough” level.  Apparently mine wasn’t high enough because yesterday the doctor’s office called the pharmacy and upped my dosage for my last three treatments.  They delivered the new balls at 9:30 Thursday night.  It’s quite the operation (hard to tell how much all this is costing me).  Today I had to run some errands first thing in the morning and had a check up with my surgeon.  So as soon as I got home I plugged into my medicine (about 10:30 am).  Everything went fine, but as the medicine was finishing up I noticed my stomach was not feeling well.  The vancomycin is not a friendly antibiotic to me.  It works well, but it doesn’t really like me.  I guess the increase of 150 ml in the dosage didn’t make my stomach happy. 

Pete and I were supposed to go shopping for a cookout we wanted to have tomorrow, just us, Katie and Pete’s niece, Jeanie, who I adore.  I was already apprehensive about having company, I’d barely been out of the house and knew my energy level wasn’t great.  Plus after being sick and in the hospital my house was looking a little neglected and there was no way I was going to have anyone come in the way it looked.  So I had it all planned out, shopping Friday afternoon for food, cleaning Sat morning with Pete coming to help both times.    So Pete came in this afternoon and I was trying to put on a good face, even as my stomach was playing the congo.  He took one look at me and asked “Are you tired?”  I just poo pooed him and said “That’s a loaded question.” And walked back to the bathroom for a minute.  When I came out he was sitting on the couch and said he wanted to talk to me.  He asked if I’d rather not do the dinner tomorrow.  As can be expected I burst into tears.

You have to understand that it seems whenever Pete wants to do something, either with his family or just us, I always feel like I’m putting him off.  I thought about it all the way home from the doctors this morning.  The evening before we had gone to dinner with my daughter, Jessica, to celebrate her birthday.  It was very low key and a pretty quick dinner, but I had made it.  I had made up my mind that no matter what I was going to do this cookout tomorrow.  I could summon the energy, even if it meant I was going to spend the day in bed on Sunday.  When he read me like a book, or just had his heart so open that he knew I couldn’t make it, it made me feel so loved, and so disappointed that I couldn’t make him happy, again.

He just wrapped his arms around me as I cried and told me it was all right.  I suggested we go out to dinner together instead of eating here (saving me the shopping, cooking, and cleaning).  He called Jeanie right away and it was done.  I can do dinner out, just not in, ladys you know what I mean.  What a wonderful man I have in my life that knew my pain and understood even without me telling him.  How sad that we have to compromise our lives almost daily.  I know it’s a small thing and the blessing out weigh the compromises daily. 

Just wanted to share one of my blessing today.

Well, I’ve been on an adventure, of sorts.  After my last entry I started to loose energy.  Although the pain from the diverticulitus got better I was exhausted and my temperature started to rise.  I thought it was possibly the antibiotics they had put me on.  Through last weekend the couch and my bed became my best friends.  By Monday afternoon, and a temperature of 100.7, I knew I had to call the oncology department.

The Physician Assistant (PA) asked me to come to the hospital, room 595.  She had talked to my doctor and because of the infection they wanted to check everything out.  She wooed me with the possibility that I would just stay overnight.  So my sweet Pete came and got me and we walked right into room 595.  It wasn’t a bad room, I had a view of the doctor’s parking lot and the trees and mountains, but it was a hospital room.  I knew, eventually, there was a possibility I would have to stay on the oncology wing of the hospital, but it seemed really soon to me.  The world slows to a creep in the hospital.

When the PA came in she did an examination.  I explained that my stomach didn’t even hurt and was only a little tender (I couldn’t understand what was making me feel so sick).  I mentioned that my left breast was tender, swollen and red again, but that had been happening after chemo.  She didn’t like the look of it.  I had mentioned to my doctor at my last visit that the area did some crazy things after chemo, turning red, getting swollen and then not going down until right before my next treatment.  He had thought it was just the chemo.  It wasn’t really red, just kind of rosy.  The PA thought it would be a good idea to get an ultrasound of both sides, just to check them.  They were also going to put me on IV antibiotics, because apparently the oral ones weren’t killing whatever was making my fever go up and the weakness.  My doctor came by for an ultra second and agreed with everything the PA wanted.

It was a little while later the nurse came in to start the vancomyicin antibiotic through the IV along with some fluids.  This is the same antibiotic I had when I had the cellulites the first time around and had to have IV therapy for 14 days.  I felt strongly that this was a bad sign.  The last time I had had it they had pumped it in at a fast rate and I got something called “red face syndrome”.  After that first dose I was getting Benedryl IV before every dose.  I’m sure most of you are familiar with Benedryl.  It may even make you a little sleepy or foggy headed when you take it.  Through an IV at 50 ml it makes me down right loopy.  I was dreading this, but they did it with the first dose and just as I was getting loopy headed they came to take me down for the ultra sound.  9:00 pm at night they are wheeling me through the hallways and all I want to do is lay down.

The ultra sound seemed to go well.  The technician even asked me if I’d been on antibiotics for a while.  It kind of made me feel like they didn’t see anything.  She took a really long time on the right side and less time on the left (the problem one).  Then back to the room.  Have any of you every noticed that, even though everyone is extremely kind and friendly, you feel like a lab rat in the hospital. 

After a restless night and some different antibiotics (are we keeping track because now I have been on 5 different antibiotics over the last 3 weeks) I am more exhausted than ever.  I’m an early riser, and apparently not a trouble maker, because I’m up and washed and dressed by the time I see a nurse or nurse assistant in the morning.  As my breakfast is delivered my doctor comes in.  As he is washing his hands at the sink he says, “Did we know that your left implant had ruptured?”  Then he turns to watch my face.  He knows we didn’t know that.  He, once again, is trying to ease me into something he knows is going to make me crazy.  “No, no we didn’t” I answer.  He’s in a hurry again, but explains that he’s called the plastic surgeon and we’ll have to see what he wants to do.  He says that I probably have another infection from the rupture.  As he’s walking out the door I’m still asking him questions the last one was will I be able to go home today (after all the PA had suggested it when she called me to come in).  He laughed his deep not funny sounding laugh and just says “Uh, No” as he heads out the door.  I’m trapped, tethered to a clear plastic tube dripping things into me.  The thought occurs to me that I could probably take it out of my chest, I’ve seen them do it dozens of times, but the wrath of my doctor and loved ones would come down on me so fast, plus this is probably the best for me.  It is just so out of control, well, out of my control (that’s the hardest for me). 

When the nurse comes in to hang my morning vancomyisin IV she said the doctor wants to try it without the Benedryl.  I’m thrilled and terrified.  If it goes in without the red face showing up then I don’t have that dopy feeling all the time, but if it doesn’t everyone (including me) gets exited about the red face.  I’m not sure what made him think to do that, I hadn’t said anything about hating the Benedryl (although I did).  It makes me feel like he’s looking out for me, something I hadn’t really felt lately.  Anyway, three hours later, I’ve had the medicine with no reaction, so from here on out no Benedryl, yeah.

By the next day I’m feeling very well.  In walks my favorite Nurse Practitioner (NP).  He sits on the couch and just visits with me for about 30 minutes.  I feel like a human being and when we are done he starts working with the patient advocate to get me set up for home health care and get me home.  Those two magnificent people worked fervently for hours to get me set up to go home.  I owe them.  They could have kept me until Monday, it would have been easier, and then just had me come back for IV therapy, but no they squeezed and pinched and wrote orders and made phone calls so I could go home.  It took me all day to get out of that hospital (I had to take more IVs before I could leave) but at 8:00 Weds night I was rolling out of there.

I’ve had to go to the hospital for IVs Thurs and Friday (7/4).  Home health care is scheduled to come today to show me how to do this from home for the next 9 days.  I got my delivery of medicine and supplies yesterday afternoon about 5:00 pm from some place 2 hours away.  I will admit I’m a little nervous about doing this stuff from home, but I’m also very happy to be home and not running to the hospital every day.  They should be here at 10:00 this morning.

I almost forgot to tell you about the implant.  The plastic surgeon came into the hospital and he was his usual cheerful self, but after the exam doubted the implant had ruptured, until he looked at the ultra sound.  He said fixing it is no big deal.  Really??  The ideal plan is to get this infection cleared up then have a chemo treatment on 7/17 (it had been scheduled for last Thurs but they won’t do it while I have an infection).  After that I’ll see the plastic surgeon to schedule surgery to get the implant taken out or possibly replaced (I haven’t decided).  I’m trying not to think about another surgery, that’s just a whole different blog.

I’m sorry this is so long.  There was just a lot of information.  I didn’t even talk about the incredible nurses on the oncology floor of the hospital or the support I’ve been getting from friends and family.  I am feeling like a blessed person.  Maybe one in a dark whole, but still very blessed.  I’ll write again soon about the adventures of home health care I’m sure.

Blessings,

Lynn

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