When I was younger, I used to just love roller coasters. Then I didn’t ride one for years, until Jeannine lived in Nashville, and we went to Opryland. I rode one there and thought I was going to DIE. I nearly passed out!! Since then, I’ve avoided them like the plague. However, this past week has certainly been a roller coaster ride – and felt at times I might die – or wished I could. If my kids and grandkids had not been here, I think I might have checked on out. What a wonderful distraction they were for me.
Mark and the boys spent Thanksgiving Day at Amy’s parents for the traditional meal. Jeannine and her girls arrived on Wednesday and spent much of Thursday preparing for our big meal on Friday. Sofia,11, made the green bean casserole and helped with the cranberry salad. Maya, 13, made the pumpkin pie with gluten free crust, so that Sofia could eat that. Friday, Mark put the turkey in the oven early (using a big cooking bag), dusting the inside of the bag with gluten free flour, and Jeannine got the potatoes ready to cook for mashed potatoes. Mark had put out the Rhodes frozen rolls to raise overnight, so they were ready to go into the oven for 20 minutes before putting the turkey in. They were later put into the oven again after the turkey to reheat. Some stuffing got made somewhere along the way. Everyone helped to get it all together so that when I got back from McPherson (shot at 12;30), we were ready to eat. And I did absolutely nothing to help! Well, I gave some sideline advice when needed, since this was a new experience for them all, fixing a whole traditional Thanksgiving meal. They did a fabulous job, and everything was delicious. Now both kids know how to carry on the traditional meal.
Tried to load a video, but think it was too big and failed to load.
Tuesday, a lady I didn’t really even know (she had attended one of my quilt talks at the Methodist church here), came to the door, just out of the blue, and brought us a beautiful braided sweet bread. That was SO kind of her! Everyone enjoyed that the rest of the week.
Wednesday, Guy’s cousin, Keith and Sharon brought us a batch of cinnamon rolls fresh out of the oven and a pecan pie. Sharon had sent me an email and offered to bake whatever we needed, and I told her that we would be fine. But they came with the goodies anyway. Bless their hearts! Later I got to thinking – it has always been hard for me to accept help or gifts, but I realized that if you decline those things, you actually rob someone a blessing of being a gift giver. So I’ve learned to graciously accept it all.
The son of our church friends had baked a caramel apple pecan pie and fixed a sweet potato casserole and brought it to us on Thursday.
God bless all these generous people!!!!
The double chemo from last Friday and its side effects have really kicked me off into the creek this week. My BP bottomed out on Monday, and I had to get a liter of fluids. The chemo dropped my blood counts to dangerously low levels, so I had to return to the McPherson hospital every day, starting with Wednesday for these bone marrow-stimulation shots to try to build me back up. After Wednesday, the cancer center was closed, so I’ve had to go to the ER to get them each day. Today, Sunday, is supposed to be my last shot for this go-round. The problem is that we are in a major blizzard as I’m writing this Sunday morning. Can’t see the houses across the street. Winds are 30, gusting to 44. Out here on our hill, the wind is usually about 10 mph more than in the middle of town. It seems to be a pretty fast-moving storm, so hopefully by the time we need to go get my shot, we’ll at least be able to SEE.
OK, back to my week…..I don’t know how to discuss, delicately, the biggest issue I’m deal with on a daily basis – and usually 3-4 times a day. But I’m going to discuss it here, since many of those who read this are in the medical field, and we talk about all kinds of gross things without giving it a second thought. (And I need the specific prayer!) I never thought that a hem$%^&* could be fatal, but I’ve nearly died from it this week. It honestly is worse than having a baby without any anesthesia! I could have delivered a dozen children this week for all I’ve been through. Yes, I’m taking stool softeners and doing all the things you do to treat one. But I go to hell and back numerous times each day, and the pain drains every ounce of energy that I might have mustered up after the last bout. Sometimes, I almost faint. The chemo and side effects are nothing compared to this. I moan, I groan, I get MAD, and I pray just to get through it. I’ve considered stopping the chemo and having surgery if it continues. I don’t even think they would consider surgery until being off chemo for a while. I don’t know what to do. I just know if this is going to be my daily life, I’m not going to want to keep going. The lights of heaven are growing brighter every day. I just don’t know. Is this God’s way of telling my time here is done and it’s hospice time? It’s going to take Divine intervention to keep me going. The last two days, I’ve not had constant pain, so I praise the Lord for the periods of relief. Perhaps, He is helping me just a bit. Just pray for me, and pray I can keep up the fight, because the chemo is definitely working. I’ll include pictures at the end. The places on my cheek are shrinking; the area on my forehead no longer bleeds out at inappropriate moments; my forehead is pinker, less purple, and is drying with some superficial peeling. The blistery area near the inside of my left eye is gone (although the area is still quite black), the blister at the outer left eye is shrinking; the discolored area around my right eye is pretty much gone. Overall face is less bruised looking. So I would hate to stop the chemo. The over-riding thing that I cannot get away from or stick my head in the sand over IS - this cancer is not curable – so I’m just putting off the inevitable. HOWEVER, I’ll take however much time I can get. I keep remembering that God’s timing is not man’s timing.
It is hard to keep the stiff upper lip – it simply is NOT fair! Why ME???? I lived a good life for God and man – I’m sure not perfect, but I didn’t deserve this, anyway you look at it. I had a great desire to enjoy retirement and live into my 90s, just like both of my parents. I just will never understand God’s other plans for me. I know, I know, so many have said what an inspiration I am to them. Well, I would rather have been a healthy inspiration! OK, enough of that! Can’t go down that rabbit/ranting/feel-sorry-for-yourself trail. Get back in the boat!!
I sure did enjoy having all my family home for Thanksgiving. Sofia and Jon, Jeannine’s friend put up the tree. We celebrated Christmas with opening gifts Friday evening. Had to do all my shopping online. We had the two holidays together since the boys will be with their mother, and the girls will be with their dad over Christmas. The adults may still come. That is a long way off for me to know how I’ll be doing at that time. I have to kind of plan from day to day. Yes, it would be my goal to be able to enjoy Christmas, and that is my goal. When the kids all left at the same time yesterday, sat down a bawled like a baby – had not had a good cry for a long time. What if that is the last time I see them was all I could think about.
But I dried my tears and rode over to get my 4thshot. By the time we got home, it was time to get knee-deep in the Alabama/Auburn college football game – the annual Iron Bowl. I could have skipped the frustration of the first half, but AL came out hot the 2ndhalf and put the game away to remain undefeated. A while after the end of the game, I realized how exhausted I was. I remember two years ago, I was in the KUMC ICU unit recovering from that major reconstructive surgery. I was a few days postop, so I thought I could handle watching the game. WRONG! I watched it but had to have extra pain medication to sleep that night. Adrenalin will definitely drain your whole body when the fight-or-flight event is over.
Friday afternoon, the kids and grandkids all went out to the farm. It was in the upper 50s with some wind, but they all had a great time. The adults went skeet shooting. Jeannine was so proud she hit the clay pigeon on her 2ndshot! She helped the girls learn to drive our UTV out in the pasture, and they of course had a ball! Here are some pictures from that. The video is of Maya. She is so intent - chewing her gum! 😀
Jeannine with Sofia.
The following is a picture of Jeannine with two of her rescue dogs. (The other one was around - just out of the picture I guess.) She worked to get the big one, Willow, certified as a therapy dog as part of her master's in social work. She takes Willow to her school counseling job as she deals with children who have issues. She is perfect for this job as she is really gifted in that area.
Before they all left we got group pictures in front of the tree.
Christian, 15, Mark, and Dylan 17. Cannot believe how these boys have shot up over the last two years!! Handsome young men who shine on the varsity high school soccer team (freshman and junior)
Maya, 14, Jeannine, and Sofia, 11
A friend of Jeannine's on the right, Jon.
Amy Keen and Mark
They all got away about 11:30. Mark took Jon to the Wichita airport, so it didn’t delay Jeannine getting home. The day was picture-perfect – sunny, in the 60s and very little wind. As it turned out, Jeannine ran into the starting of the snow when she reached Colorado and had to drive 2 hours with it blowing and in the dark. Bless her heart – the girls are terrified of traveling in bad weather. They drove through tornado warnings the last time they came, in the summer. It took a little longer, but they made it safely. It’s a good thing they all got out yesterday. They would never have been able to go today with the snow and road closures. Mark didn’t have any trouble going east from Wichita to Kansas City, ahead of their snow. They are supposed to get 8-12 inches today, so they are all snuggled in safely today. Amy had a bridal shower to attend yesterday, so will come tomorrow to pick up Abby (was no room for Abby in Mark’s car) and return to KC. By the way, who schedules showers during the holidays, anyway????
Side effects from this chemo
1) Fatigue!
2) A little bit of mouth tenderness, but quickly taken care of with salt/soda/water rinses
3) Intense flavors when I eat anything, and it remains a long time after eating. It feels like everything is coating my mouth – hard to describe, but kind of decreases the pleasure of good food. Not a big appetite, but not as bad as some of the previous chemos.
4) NEUROPATHY It has hit pretty hard. Throughout the 1stinfusion I put my feet on ice to decrease the amount that went through my feet. I think it helped some, but I can feel that it has increased from what I already had. I should have put my fingertips on ice, too, because when my foot neuropathy developed from the very first chemo, my fingers were hardly affected at all. Of course, this is a different drug, and I can really tell it is affecting my fingers this time. (Lord, please don’t take away my ability to play the piano!!)
5) Itching under my arms. I know! How weird is that??? I spray a bit of Benadryl on a cotton ball and dab it there – it helps. My bathroom looks like a hospital med room!
Here’s what I’m thankful for today:
1) Times of pain relief
2) Pleasant memories of my family being here.
3) I’m still here in spite of the dr’s predictions (He said he loves to be proven wrong!)
4) My eyes have stopped swelling when I sleep at night.
5) I’ve not yet acquired an infection – thanks to powerful antibiotics, masks, and healthy family.
6) I got a little more sleep last night.
7) My left rib has quit hurting.
8) My left knee is doing better with very little pain
9) So far, I’m not having the intense bone pain from these shots like I did last time. I will be getting the heating pad out when I get done here.
10) Football, for distraction
11) A wonderfully patient husband
12) God’s holding me with His right hand – His presence and His peace.
And as always……I’m in His hands….
Scroll down for latest pictures of head. (Don't know why Blogger decided to switch fonts on me throughout this blog. 😔)
You can see pinker skin on my forehead, Multiple areas forming dry scabs. Not as spongy and bulging.
Side of face less bulging and less bruised looking.
Left eye still black but blister drying at the lateral part of eye, and blister gone on the inside corner of eye.
Most of the discoloration on the right side of my face has all but disappeared.