Monday, October 31, 2016
For those that are following my blog, but are not on Facebook, here are some things I posted there and will catch you up on the latest.
Written Sunday night:
Kind of feel like I was run over by a truck today. My drainage tube stopped draining this afternoon. I could see where the blockage was - just above the connection where I could change the tubing. In other words, the 2nd half of it that went into the pump - the part that I could change - was perfectly OK. The upper end that went to my head was occluded. RATS! I called the company, and the man I got on the phone was no help at all. I had already run all the troubleshooting that I knew to do. I simply couldn't make him understand where the blockage was. I almost got rude and hung up on him, but I DIDN'T. After he said to call the home health nurse, which I figured I'd have to do, I did hang up. I called the home health office and got a recording. Someone called me to say she was calling the nurse on call. She finally called and walked me through the things I'd already done. She said she was on her way, but lived 45 minutes away. I figured it was probably just a small clot that was too big to go through the hole of the tiny part where the two tubes connected. There has been very little drainage, so it wasn't like anything was backing up into the wound, but there was an area of about 6" that was not moving on the distal end.
She arrived just before I got the chicken ready to stick in the oven. (Guy had to finish supper.) We tried everything. I asked if she couldn't just stick a syringe onto the plugged part and pull a little on the plunger to dislodge it. She said no, she couldn't do that. (If I'd had a sterile syringe of my I own, I would have already done it!) She finally called the doctor. He told her to go ahead and change the taped area and remove the old tube and replace it with a new one. Just don't remove that large black sponge that is stapled to my head! The necessary package to do that was in the box I had here that the pump came in. I did not know that this drain was just held in place with a big piece of tape - really sticky tape!! I thought it was probably sutured to my head. She said, "this is going to really pull some hair." I said OK, until she started to pull it!! I said, "How about you just take some scissors and cut a big hole in this tape, leaving the edges firming attached? Then replace the drain (which looked kind of like a saucer shaped piece about the size of a 50 cent piece attached to the tubing), and tape that all down firming attaching the tape to my scalp and to the outer rim that is left (stuck to my hair)." She thought that was a fine idea. So she did. After it was al attached and we turned the pump on, we got an "air leak" signal. ARGH! So she added some more tape...and more tape. Still got the air leak signal. I don't know how many layers of tape she put on it - I think this happened about 4 times, and she finally found the area where it was not down firmly. All this taping meant a lot of "firm pressing" on this wound and surrounding area. At first I told her don't worry, it's pretty much all numb, but then I found out that there were some areas that were NOT all numb - really tender. She finally found the area that was the source of the leakage and taped it securely - again, and I got no more error messages from the pump. The pump pressure was correct, and I could hear the "tea kettle' noise coming from the back of my head once again.
It probably took about an hour of taping, and when she left, I thought I might have to take a pain pill - haven't had one for days. But I ate supper, and felt a little better. I'm thinking I may take one when I go to bed. The 1st two nights after getting home I had to get up in the night to take one, but none since. Might sleep a little better if I take one tonight.
I've got this neck pillow and sleep thing pretty well figured out except i wake up with my good ear asleep and hurting terribly. Gotta work on that part tonight.
OK, that's enough update for one day. Good night.
Still in His hands.....
This one was written fairly early on Monday morning:
MY LYMPH NODES ARE CLEAR!!!!!!!!!!! Do you hear me???? I'm standing on this rooftop shouting "MY . LYMPH . NODES . ARE . CLEAR!!!!!!!
THANK YOU, JESUS!!!!!!! PRAISE THE LORD!!!!! THANK YOU JESUS!!!! PRAISE GOD!!!!!!
Just got the call this morning from Dr. M's PA. We are doing happy dances all over the house!! I can handle anything now!! (God and I, that is).
Y'all prayed them CLEAR! I know you did!! THANK YOU!!!!!!!
Then later Monday morning:
Y’all have been so kind to respond to all my looong posts with prayers and encouraging words, and I simply can’t thank you enough. I know I’m not the only one to have ever had cancer. Many of you have had it, or are living with it now – or had someone dear to you have it. I remember James Spann (Birmingham’s famous meteorologist) responding to why they cut into regular programing when there is a tornado in the area somewhere. He said, “Even if it is only an F1 tornado - somewhere - if it comes down YOUR street, it is YOUR 9-11.”
When you’ve been living a healthy life, just going along, loving what you’re doing, having parents that both lived into their 90s, and just out of the blue – wham – you’re told you have cancer – it’s a jolt!
I recall just before coming to Kansas City, I went into the church office there in Little River to talk to Pastor Ted Weis. He said something that has stuck with me, “Don’t waste your cancer.” When he said that to me, he sat there for a bit and then said, “Do you know what that means?” I sat there.... thinking about it, and then I said, “Well…..perhaps it means be sure God gets the glory out of all this.”
I’ve tried to live most of my life so it would be pleasing to God. I’m sure I’ve failed Him many times along the way, but in my recent low moments, I had to ask God, “Why me? Have I not been good enough? Have I not done enough for others? Have I failed you in some way?” I’ve known some WONDERFUL Christians that have suffered terribly, so I know the rain falls on the just and the unjust. I cannot question God’s motives. All I can do is trust Him and his ways and reason for things. Romans 8:28 was my mom’s favorite verse: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
Here’s the bottom line. This is all not about me. It’s not about, “I don’t know how she does this.” Or “Poor Sheryl, she is going through so much!” This is about a Holy God getting the glory. In sharing my faith, having a personal relationship with Jesus as my Savior, through all of this, perhaps, if just ONE person begins to think about God and where they will spend eternity, and accepts Jesus as his/her Savior, then it will have been worth it all. If someone who Is walking away from God, and has chosen another path, realizes it is not worth the risk, and returns to Him, it will be worth all I’ve gone through. That is MY prayer.
And finally, the hospital called later in the day to say that my surgery was scheduled as Dr. P’s first case, so I need to be at the hospital at 5:30 am in the morning. Yikes! But that is far better than the first surgery which was in the middle of the afternoon.
Since the doctor said I would be there a week and in ICU, I won’t be blogging for a while. Guy will be keeping those on Facebook updated, and I’ll update when I can.
Again, I just can’t thank y’all enough for your prayers, thoughts, and words of encouragement! They have meant more to me than I can possible express. I love all of you!! God bless you!!
Still in His hands....
Posted by Sheryl at 7:03 PM
Saturday, October 29, 2016
I’ll just include the day after coming home and the next day in this post.
The evening I came home from the hospital, by the time I got ready for bed, I had broken out in a cold sweat and just flopped onto the bed, and lay there for a while. I knew I had probably overdone - washing my hair and all. I’m sleeping on the side next to the wall, and there is barely enough room to slip along between the bed and the wall. So as I tried to get into bed I got my feet tangled up in the recharging cord that I had just plugged into the pump, and I unplugged it. Between the small space, the dark, and the charging cord plugged into the wall beside the bed (and the long drain tubing), it is a challenge to get into bed when you are NOT weak and sweaty. I don’t know why this pump is so hard to get plugged in, but it is. The guy that supplied it at the hospital said that the plug-in was being redesigned because people have so much trouble with them. So after lying there a bit, I groped around on the floor and found the cord, felt around for a while to find the connection area on the pump and finally got it plugged in again.
Didn’t sleep much that 1st night home. They told me to keep my head fairly well elevated because it would facilitate this tube draining. I had 4 pillows in the bed and went to sleep completely on my right side, but I must have been too low, because I woke up with my head hurting. I wanted in the worst way to wake Guy up and ask him to get me the crackers, Percocet and water in the bathroom, but I didn’t. I unplugged my pump, carefully laid the cord across the bed so I could find it when I came back, got my feet over the edge of the bed without pulling on my drain tube, found my house shoes, and very carefully in the dark, stepped over the miles of recharging cord in the very narrow space, and got to the bathroom. The Percocet helped me go back to sleep momentarily, but I woke up with my head in an awkward position several times. The challenge is to find a way to fix the pillows so that you are able to lay your head down, NOT putting any pressure on the operative area, but balance on the other half of my head in such a way that you can relax enough to go back to sleep – and not have your back start to hurt being in an awkward position, or your hip, and not have your legs all tightly doubled up so you don’t get a blood clot. Believe me…..it can’t really be done. It kind of takes me back to that short time I was teaching nursing fundamentals, and we were in the lab teaching positioning. You had to get your patient in good body alignment, with no undue pressure on any body part, and so that your patient didn’t feel like they were having to “hold” themselves in that position. They needed their whole body in a relaxed position so they could rest. There just wasn’t much relaxing for me that night. I kept thinking about that nice hospital mattress that adjusted to wherever my body was. NOT that I wanted to be back in THERE, understand…..
The next morning (Thursday), Mark and Jeannine left about 10:00 am for the airport. Mark had to fly back to Canada for a 12-day stint, and Jeannine returned home to Ft. Collins, CO. It was SO nice to have my family altogether! They were such a comfort to me.
At about 10:45 am, the home health nurse came. She was very nice and friendly. She checked me all over and went over my meds. She said she had no wound care orders. That was OK; they had told me there would be no dressing changes; it was to stay as is until I went back to the doctor. She took a close up picture of the area and said there were 4 staples along the edges. She measured the area and said, "12 cm…. but don’t know how deep…..” I said, “To the bone.” “Oh!” she said and made a bit of a face. (Yeah, I thought so, too!) I did tell her the pump seemed to be leaking just a bit, and I couldn’t see from where. We decided the disposable container needed to be changed, even though there was very little in it, and we did that. Well, I did that, under her supervision. That was easy. I don’t believe it has leaked any since. There is still very little in the tubing, even though it sounds like a little whistling tea kettle coming out of the back of my head. She checked my vital signs, and said everything looked good. She talked to me about the importance of getting LOTS of protein – 80 grams a day. I’ve often been interested in reading labels for the fat grams, the sodium content, the sugar content, but had never really noticed the grams of protein in items. She suggested that I get Premier Protein. This is a liquid that comes in a 4-pack, and it tastes less chalky than Ensure and Boost, and has less sugar. AND it gives you 30 grams of protein per container. And we talked about Colace vs. Senna, giving me some tips in that area. Since I seemed to have everything pretty much under control here, she said she would see me next Tuesday, but I was to call her when I knew the next surgery schedule.
I got on the internet to look up foods high in protein. I didn’t realize that oatmeal and broccoli are high in protein. I like both of those. So I made a list for Guy for the next grocery store trip.
In the afternoon, I had just a delightful visitor – one of my favorite people in all the world – Carol Broadbooks. She was our 1st Church of the Nazarene pastor’s wife when we lived in Hutchinson, KS in the early 80’s. If you look In the dictionary under “pastor’s wife”, you will find Carol’s picture. When they made her, they threw away the mold. As I look back over my church years, those years with Pastor Bob and Carol, youth pastor Dave and Brooksie Smith, and music minister John and Rena Nance, those are my favorite years!! When the Lord called Pastor Bob to a new assignment, I just knew I’d never see Carol again. But, years later, here we are in Alabama, and they show up as District Superintendent of the North Alabama Nazarene district. We had many all-afternoon lunches, and each time we just picked up right where we left off the last time. No matter where Carol was or what her title was, she was just sweet Carol, and she had the same concerns and hearts’ desire that I did. We could just sit and talk and talk and talk for hours!! And we did!! When they left Alabama and moved to TN, I was heartbroken and thought there was no way I’d ever see her again. But, here we are – years later, and we are both in KS! God is good!!
She came by about 2:30. She had a vase of flowers and a large bar of DARK chocolate in her hand and a Starbucks muffin in her purse. (Oh, how I love dark chocolate!!) After a big hug, I said, “Are you ready for me to turn around???” She said, “Yes,” and since I had my back to her, I don’t know what her face looked like when she saw it. We sat on the couch, and she said, “Well….let’s hear all about it!” And again, we talked for hours, laughing and crying. She prayed a beautiful prayer for me, and said we would stay in touch.
The rest of the day was rather uneventful. I did go outside in the backyard a little. It was quite windy, but the temperature was just marvelous – mid 70s. After a little, I asked Guy to walk with me down the street for a little ways, just so I could get out of the house. I didn’t want to sit in that recliner all day! We did and took Annie with us. Thankfully, we didn’t see anyone, and I didn’t hear anyone scream along the way, so I don’t think anyone saw me. There’s just no way to camouflage that big ole tube coming out the back of my head! It’s just THERE!
In the afternoon, I did manage to get a nap in the recliner. I rolled up the throw under my head/chin, and slept soundly for maybe an hour or more. I woke up feeling like I had been run over by a truck, but I got up and walked it off.
Chris’ mom came by to get him and take him overnight to her house. Dylan stayed behind because he had a Halloween party to go to. It was at the house of one of his friends from school. After quizzing him a bit, I stopped short of asking for the girl’s phone number so I could talk to the parents. It sounded like a legitimate party. When it was time to go, he came down the stairs dressed as an “Alabama Redneck”!! He was so cute!
Before he left, I said to him, “You remember the talk we had about parties…..if ANYTHING out of the ordinary goes on, what are you supposed to immediately do?” He said, “Call you.” You got it!
When he got home, I was getting ready to head to bed. I asked him if he knew where there was a neck pillow. He told me Chris had two, so I went into his bedroom and took one of them. THAT was the aid I needed! It took about an hour to figure out how to get the pillows and the neck pillow arranged, but I finally fell into a deep sleep. I can’t say I slept like a baby, but I did get considerable sleep through the night – for the 1st time since surgery. Today, I no longer feel like a zombie!
Oh, I forgot to say that yesterday, sometime after the home health nurse left, the plastic surgeon’s office called me and said I was on the Tuesday surgery schedule to have this wound closed. I said, “Uh……that’s IF the margins are clear.” She said, “Well, let me see if the pathology report has come back. When was your surgery? Tuesday? Let me look.” She was probably gone about 20-30 seconds. The LONGEST 20-30 seconds of my life. I’m sure my BP and heart rate didn’t know whether to race or stand still. She came back shortly and said the report was not back. At the time of this writing, Saturday, 7:00 pm, I’ve received no call.
I wanted to show you some of the nice things that people have given me. They are all SO appreciated. 1st of all, my sister has sent me a card every day. Bless her heart! And she sent me this lovely, SOFT, throw – a Dennis Basso throw. It is really heavy and will feel so good on cold KS winter nights. This picture does not do it justice. It is a beautiful deep purple.
Here are the things Carol brought me. You can’t see the Starbucks muffin, cause I ate it!
The day I came home from surgery, Jeannine had fresh cut flowers.
And a potted plant for when the flowers are gone.
When Guy went to the grocery store, he got me these almonds (high in protein), and he knew how much I love caramel corn. Don’t think the caramel corn has a whole lot of protein, but it sure is good!
I suppose I’m going to have to wait until Monday to hear back on the path report. *sigh*
I remain in His hands…..
Posted by Sheryl at 7:14 PM