Faithfully Fighting

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

Well it’s been a good week.  Last Saturday I was feeling better and Katie went away with her sister.  Pete and I took a drive and he briefly met some of my family, my Aunt, Uncle and my three wonderful cousins, Deb, Lisa and Ann and their children.  It was really good to see everyone.

I’ve been working this week, but the beginning of the week I was still having pain in my stomach.  The doctor ordered another CT scan, this time of my pelvic area.  I went Thursday night.  I’m really starting to hate CT scans even though my doctor really seems to like them.  By the time I went in for the scan on Thursday I had finished the Cipro antibiotic and my pain was pretty much gone.  I was only having an occasional twinge from time to time, not the amazing shooting pain from before.  I even thought about canceling the appointment, but didn’t want to bring down the wrath of my doctor. Apparently I didn’t have a kidney infection, my symptoms were deceiving.  The scan showed a slight case of diverticulitus.  I imagine it would have been a bad case if they’d done the scan the week before when the pain was making it hard to walk! 

So yesterday the doctor’s office calls to tell me about the scan and let me know that my doctor is putting me on two more antibiotics for a week.  I told them the pain was better, almost completely gone.  They said these would do a better job of making sure the infection was gone before I had my next chemo (which is next Thursday 7/3).  So I’m popping two different kinds of antibiotics and on Weds I’ll start my steroids.  Sometimes I feel like a lab rat.  In my head I understand that they are trying to keep me from having the pain again after my next treatment, because the chemo will attack any weakness in my body. 

Having said all that I want to share with you my devotional reading from yesterday:

Paul is an inspiration to me.  I am humbled every time I take the time to look away from myself and to the Word.

Have a great week!!  God Bless!

I’ve hit a little snag, again.  Seems like every time I have chemo something happens that throws my system and my systemic system off.  Thursday’s chemo did pretty well through Friday and Saturday.  I was feeling a little off on Sat night so I took a phenergan pill for my stomach.  It was only the 2^nd time I’d taken it and it knocked me out.  Poor Pete and I were sitting on the couch watching TV and the next thing I knew he was shaking my shoulder and telling me he was heading home.  I just nodded, dopily, as he left.

On Sunday I woke pretty drowsy and not feeling well at all.  Soon after breakfast I was having severe stomach pain.  It was debilitating and Mom came over to help me out. I spent the day with a heating pad and sipping water. When I get sick I have a great deal of trouble distinguishing when I should call the oncologists.  They never complain, and are always very sweet, but I hate to bother them if it’s just “chemo side effects” that will go away.  I did call on Sunday and let the PA on call know what was going on, she said to take a pain pill and Maalox and call if it didn’t improve.  It was much more severe than before, but I thought it was my 4^th treatment and maybe I had just over done on Friday and Sat.  I monitored my temperature and seemed to feel better (not good) but better, by the evening.  On Monday it was still bad, but better than Sunday, until the afternoon.  As the afternoon and evening came on my temperature started to rise.  Surprisingly the pain was less, but the temperature started creeping up and up.  We chemo patients have strict written instructions that if our temperature goes to 100.5 (one hundred point five) or higher we are supposed to call.  My old oral thermometer started registering 100.1, 100.2, then I started drinking cold water, taking Tylenol, putting cold wash cloths on my head with the fan blowing on me.  I just didn’t want to call again.  The highest it went was 100.3.  I went to bed about 9:30 pm and rested well until 11:30 pm when I was woken, abruptly, by shooting pain in my stomach through to my back.  It was bad.  I called immediately. 

I made it to the next morning by taking some Vicadin and Ativan.  At 9:00 am Tuesday Pete was driving me to the oncology center (the one thing I was trying desperately to avoid).  When I got there my temperature was 100.4 (I had checked it with my old thermometer before we left and it had been 99.5 – wonder how much it had been the night before??).  They took blood (my counts were good), they gave me IV fluids and did some other tests.  I was sore and very, very tired.  I looked awful and they aren’t used to that.  With the exception of the bad cellulites I had back in March I had never been in there without my makeup, earrings, and a big smile.  Tuesday I couldn’t even muster much of a smile.  In walks the nurse practioner who is one of the kindest people I have every met.  He always makes you feel like you are the most important person he has talked to all day.  He came in on Tuesday with a young woman who he introduced as a student.  He asked if she could stay for the examination.  I’m ashamed to say my first instinct was no.  I’m going to try to explain, but I’m afraid it will sound lame.  She was lovely, really, really, model, miss America lovely.  She was tall, blonde, perfect make-up, quietly elegantly lovely.  I was about to talk about stomach issues that I wouldn’t talk to my own daughter about (who might be older than her) plus, I will admit, I resented her loveliness.  I know it’s not fair, she had a kind gentle smile, she didn’t speak, but I did not want that pretty little girl in my room.  I was feeling crippled and ugly and I’m ashamed to say I resented her.  I tried to change my mind into a motherly mind set and plowed forward.  I even said a little prayer of forgiveness in my head asking the Lord to guide my thoughts to Him and to set and example of Him.  So I said yes to the NP that she could stay.

I was glad I hadn’t gone in to the oncology center on Monday because I  appeared sick enough Tuesday that they considered admitting me to the hospital for IV antibiotics and if he’d seen me on Monday morning I would have not won my argument to go home.  As it was, the test came back good enough that he did allow me to go home with my antibiotics.  I’m glad the blood work was good!!  I also have strict instructions that if my temperature goes above 100 after the next 24 hours I have to call them.  They said I have a kidney infection.  I’ve never had one before, now I have GREAT sympathy for everyone that’s ever had one.  I hate that every time I have chemo I seem to get some kind of infection. 

I also hate that when I’m at my worst that is when I neglect my prayer relationship with the Lord.   I finally took some time yesterday morning to look at that issue and spent some time on my knees.  I’m doing better.  Resting and trying to regain my footing.  I hate my weakness, but I’m sure I can learn a lot from the humbleness of it.

Thanks for the prayers.

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