Tuesday, January 8, 2019
Since the last blog, things have eased a bit for me. The 25% reduction in the strong chemo helped to ease the side effects from the last time. It certainly did not eliminate them, but made them more tolerable. The biggest issue is the low hgb I have right now (7.7 - half of what it should be), which is causing so much weakness and shortness of breath with very little exertion.
I had an appointment with Dr. Page today. It was a very encouraging visit. He said he could see improvement from the last time. I see him once a month. I see it every day, so it is hard for me to see much progress and becomes discouraging. Dr. Page addressed a lot of my questions. He felt it was the gabapentin (given for the neuropathy) that was causing a lot of my issues – particularly the wobbly, unsteadiness. He thinks that will even out as time goes along. One of the very positive things is that he is going to give me IV iron to help raise my hemoglobin enough that I can take the shots – Procrit. That is very encouraging to me. I think that will give me a lot more energy and help with the wobbliness. He is going to just schedule fluids for me weekly since I’ve been having to go in for them anyway. I’m so impressed with this doctor and his helping me with so many of my issues. I told him that 2 weeks ago Dr. Powers said he would set up a scan in a couple of weeks, and I had not heard from him, even though I have asked him in many emails. Dr. Page said, “Oh I can do that right here if you like.” I said, “But you don’t have anything to compare it to.” He said he would just send for the disk from KC, and he would have it here for the comparison. He said he would be happy to do that. I looked at Guy and said, “Well, that would be so much easier than having to travel to KC.” Dr. Page said they would do the scan right there in the McPherson hospital. He turned to his computer and said he would put in the order right now. I told him I was really concerned about the next scan because it would probably be a turning point for me. If there was considerable deterioration, there probably would be no point in continuing with all this. He still felt if it was working on the outside, it should be working on the inside. With him going to give me this iron and do the scan right here, I felt immediately encouraged. Dr. Page just always seems to have a positive outlook with me and that raises my spirits. I never feel like he is giving up on me. He always feels like there is help to be had. I haven’t had that feeling from Dr. Powers the last several times. And it is so handy here. Anytime I’ve been in the infusion center and had a problem, the nurse will contact Dr. Page, and I get immediate help from him. I just have a lot of confidence in this doctor, and I feel the Lord has directed me to him. I feel very comfortable with him.
So, this evening, I don’t feel my case is hopeless right now. I still know that this is not curable, but if I can have a few more weeks, months, years of life with some measure of quality, that is all I ask for. I still pray for a miracle; I still pray for His healing, but I’m still in the center of His will and will continue to trust His plan and give Him thanks and glory for all I have. God apparently is not finished with me yet. And so I continue…..
I’m really missing not being able to participate in so many things because of no energy – Sunday school, church, ladies Bible study, senior luncheons. I’m hoping that when my hgb comes back up and with the new spread out chemo regimen, I’ll gain some energy and be able to enjoy life a little more.
I’m concerned about my nails. They are looking really bad.
The doctor said I may lose some of them. That is a side effect of the Taxotere. That is one mean chemo. I just hope they grow back. My finger tips are very tender, ache, and yet numb, and I really have to protect them. I can’t open anything or put any kind of pressure on them. I can type by using the pads of my fingers.
Another effect of the Taxotere is that my vision has decreased considerably – sometimes have to get out my big magnifying glass that came from Guy’s mom.
I remember her using it a lot. And it causes my eyes to water a lot which adds to the difficulty in reading. Dr. Page said that would improve if I got off Taxotere, so I’m not holding my breath on that one. I can still read so should be grateful for that. Sometimes it’s just easier than others.
I was so happy to celebrate my 73rdbirthday. I actually never thought I would. Jeannine sent me the most beautiful pink roses – perfect in every way.
Guy gave me a beautiful bouquet of flowers.
I told him not to get me anything, but he said, “That is not in my DNA!” Mark called and he and Amy sang Happy Birthday to me! We all laughed over that. My cousin, Cynthia Tobias Tally, sent my Sheri’s Berries.
And I got tons of wonderful cards from so many – thanks to all of you!!!!
Well, I’m looking forward to being able to be home tomorrow – all day. Thursday I’ll get labs and Friday the Gemzar by itself. Will be interesting to see if there are any side effects from it. Surely if there are any, I’ll be able to tolerate them OK. This week past week without any chemo has been nice. Looking forward to the new regimen – and not having to go to KC.
The side of my face – on my cheek has lightened considerably and is drying up – some scabbing – and ITCHING!! I hope that is a good sign. The picture will be below in the scroll down area.
And so, my saga continues. I’m so thankful for every day that God allows me to enjoy. And those down days, I know He still holds me by His right hand, and I just cling tightly to Him and get through those days, too. I continue to thank you all for your prayers. Thanks for hanging in there with me. Means more than I can possible tell you. Much love to all of you!!!!
And as always.....I'm in His care....
You can scroll down for the most recent pictures.
All of the upper areas are very dry and scabby. The part nearer my eye brows is fluid filled and has bled out 3 times this week and once in the night.
Posted by Sheryl at 11:21 PM
Thursday, December 27, 2018
This morning I had a very weak, fainty spell. BP was really low, so knew I needed fluids. I had to go in for lab work anyway, so when I called the infusion center, they said, “Come on in.” I had a long talk with my nurse about the physical and emotional side effects I was experiencing. She called Dr. Page, and he said that when I come in for chemo tomorrow, he will reduce the Taxatere by 25%. He also recommended something for the mental part. I said I would think about it. I hate the thought of that kind of medication, but he said it would be low dose. This is the 2nddoctor (actually 3rdnow) that has recommended this, so perhaps I should listen to them. I’ll have him order it when I go in in the morning. Frankly, at this stage of my cancer, dependence on some medication should probably be my least concern.
I did finally get an email this evening from Dr. Powers. It is not encouraging.
“It seems like you are really struggling physically and mentally, Sheryl.
[He then talks about the antidepressant.]
I like the thought of reducing the dose of taxotere. But this chemo regimen gets harder and harder the more you get. Even if scans show improvement, it is unlikely that you will want to continue much more of this.
We can see you in a couple weeks with scans. I want you to really consider the best case/worse case scenarios and what that would mean to you. Even if best case, I am worried about your tolerance of further systemic therapy (without causing even further deterioration of your quality of life).
Peace and well wishes,
Very sobering email. I have a lot of thinking and praying to do.
On a little light note…Mark came back for a few days. He made homemade lasagna. I think he missed his calling. He should have been a chef – I think at one time in high school, he may have considered it.
Today is the day to start my steroids in preparation for chemo tomorrow, so I’m feeling a little better. Rash on hands is not as painful and started peeling – also underarms. Eyes still watery, but itching has stopped (Praise the Lord!) Face and eyelids remain extremely dry and peeling. Not much itching, though. “Under-carriage” still tender.
One thing I can look forward to is Friday, Saturday, and probably Sunday with the steroids on board. After that time for the next week and a half, only God will be able to get me through it. I truly am in His hands. I know that He has my days numbered. I know that I trust him explicitly. I know that He is in charge of this plan. I know that He is in control – not the doctors. I know He will not desert me.
Ways you can pray specifically for me:
Wisdom - That I’ll know when God says it is enough - come on home.
His ever-abiding Peace
His ever-abiding Presence
That the chemo works on the cancer, but does not destroy me in the process
Guy and my family
And as always….I’m in His hands…….
PS Here is the amazing thing…….I hear God speak to me. The voice is not audible, but I definitely hear Him, when I speak to Him. Short, but assuring answers – “It’s OK” “I’m right here.” “Not yet.”
Posted by Sheryl at 10:37 PM
Wednesday, December 26, 2018
I hardly know where to start. Last week was a disaster. The 1st3 days I thought I might die and was afraid I wouldn’t. Guy finally took me to McPherson ER Wednesday evening. An angel of a doctor, the sweetest, most compassionate and knowledgeable lady literally saved my life – physically and emotionally. She taught me so much, gave me encouragement and pep talks and medication to apply to my painful areas. I’m pretty sure I would have given up if it had not been for her. She gave me my hope back. Thursday and Friday were a bit better. Mark came for a visit, and that helped so much. Also, the ER doctor told me not to be afraid to take that sleeping pill that that had been ordered for me, so I did, and I began to FINALLY get some very much needed sleep. I’m sure that helped a lot.
Thursday evening, I had this major coughing spell – have not been coughing. It scared to death. I couldn’t get my breath. I thought I was going to have to go back to the ER. I guess I just had a panic attack – never had one of those before, either. I finally pulled myself out of it by just doing some slow deep breathing. Whew!
By Sunday I woke up feeling like I could go to church and SS. I didn’t feel like I could play, but decided I would try. My hands are very broken out, and my finger tips are very tender – can’t button or open anything. I keep them slathered in Vitamin E oil and aloe. The redness has faded a bit, but still very painful. Nails look terrible – will probably lose some on my left hand.
This was a week ago - more white showing now.
I got lab work done on Thursday and my counts were down again, so had to start the granix shots daily for 5 days. With the histamine from those, the allergy symptoms began. The biggest issue I’m dealing with right now is my eyes. The skin all around them and the eyelids are very dry, skin drawing and wrinkling, and peeling all around. (have to scroll below for picture) With that, is watering and itching. Miserable! The underarm rash is now tolerable, and somewhat easier sitting. I don’t know how much of these side effects is due to the chemo or the granix shots.
I’m not sure the chemo is keeping up with the cancer anymore. It seems that my forehead is darkening back to more purple, even though I’ve lost about 3 scabs. I sent Dr. Powers my Sunday evening pictures telling him I wasn’t sure I could do another chemo round if the side effects continue to be cumulative. I have not heard from him. I suspect he doesn’t know what to tell me. It makes me wonder if this is the last trick in his bag, and he has nothing else to offer me. Since I am scheduled to have one more round of chemo before I see him, and one more round is not going to clear the cancer, it may be the beginning of the end. The scan of my chest when I see him will probably tell a lot.
I read an article about essential oils (frankincense, in particular) and cancer. Many examples were given of people who were completely cured by its use. I have lot of oils, so I figured it couldn’t hurt. I’ve picked out three areas on my face and head and have been applying frankincense 3 times a day for about 3 days. I sent Dr. Powers the link to that article and asked what he thought. Still haven’t heard from him. I won’t go into the details as to how frank works, but there is physiological evidence. Physiological evidence always perks up my ears, because I can understand that. I figured I have nothing to lose. I don’t believe it can hurt anything. It at least makes me feel like I am actively doing something, because I just don’t feel like this chemo is doing the trick – the cure is worse than the disease right now.
Well, enough whining for now. There have been some really God-sent good times. As I said, I was able to go to church. Also, Christmas Eve was one of the best times I’ve had in a very long time. Mark and Amy were here. Mark spent much of the day cooking. He cooked big pot of potato soup to take to Amy’s parents for Christmas day. For us, he grilled bacon-wrapped filets, cooked fresh green beans, made an onion and fresh mushrooms glaze/gravy for the steaks, and helped my make a peach/blueberry/pear tart. Dorothy (lady here in town) had brought a potato/cheese/ hamburger casserole and sausage with kraut. The children across the street brought the yummiest variety of cookies. Burt, Guy’s 90+ year old cousin, brought fresh rolls, and cinnamon rolls, and Kay (neighbor) brought cinnamon rolls a couple days ago. We are just overwhelmed by the generosity and thoughtfulness of the people here!!!
After we ate, we opened gifts, took family pictures and all sat around and talked and reminisced until nearly midnight. We laughed and laughed. Some of the things I remembered, some I didn’t, and some I never know about! It was just what the doctored ordered for me!! Just can’t describe how much that meant to me.
Annie photo-bombing 😀
Warm, fuzzy Mukluks
Another highlight of my evening was facetiming with my sister who had been invited to one of my best friends’ home in Alabama for the evening. This is the most wonderful Christian family that I’ve been acquainted with since she had her first child, Courtney, and followed her through the next 13 children. With most of her deliveries, I was able to assign one of my students to care for her. She always looked forward to that. While living in Alabama, I grew so close to this family. Tracy tells me there is not a day that goes by without one of her children asking about me. It was so delightful to visit with some of the girls, and then Colleen sent me pictures and a video of them all singing “We Wish You a Merry Christmas” to me! How I miss this lovely family. Just really added to my evening. ( hope this video comes through)
Also got some lovely pictures of Jeannine and the girls and their 1st Christmas in their new home. Sofia in short sleeves and shorts in Dec.! 😀
Glad they were able to make some great memories. Jeannine sent me videos of Maya (13) singing 1 soprano in her honor choir. She was singing her little heart out – never once looked down at the music in her hands. I’ll see if I can upload it here. She is on the front row wearing the green hat with flashing lights – can’t miss her!
Mark and Amy left Christmas morning and went to Hutch to her parents. I got up and ate my usual oatmeal, but lay down in the recliner and didn’t wake up until about 1:00. After eating a little lunch, I went back to the recliner and slept the rest of the afternoon. I could have gone back to sleep after supper, but I thought I better get up and move around. I had to have my annual watch of “How the Grinch Stole Christmas.” I slept through “The Polar Express” earlier. I didn’t go to sleep very soon after going to bed, but did sleep until almost 10:00 this morning. I haven’t had a lot of ambition today – eyes bothering me the most – but Guy has made a nice batch of potato soup. We have the best recipe for this! I better go an eat a little – not much of an appetite, but that soup generally hits the spot for me.
Here is another bonus – the stock market went up 1084 points! The most in history! (it will take a while to regain what it has lost in the last few weeks.)
Thursday (I guess that is tomorrow – I somehow lost a day and thought I had another one) is the next lab day that tells whether I can take the next round of chemo. Have to make some kind of decision in the next day or two. I trust God will give me some kind of direction. Chemo day on Friday and the next two days are no problem – it’s the hell you have to go through for the next 1 ½ weeks. I may ask if the dosage can be reduced. Dr. Page mentioned that once to me.
Each night when I go to bed, I visualize myself in Jesus’s arms and focus on Him. He tells me it’s OK – He will not leave me.
And…..as always….I’m in His hands.
Scroll for pics
Posted by Sheryl at 9:39 PM
Wednesday, December 19, 2018
So many thoughts rolling around in my head today – and yesterday. Thoughts that I should probably not be thinking, much less writing, but if I don’t get them out, my brain may burst. After chemo Friday (3rdround), I had good days, Friday, Saturday, and Sunday. Since that time, it has been very bad. I’m not going to sugar-coat it. I’ve felt lousy. Very weak, had to get fluids Monday. It helped, but didn’t bounce back as in the past. Very weak with low BP today as well. It’s hard to describe how I feel. Just very dejected and discouraged. Each time I get chemo, some unusual VERY irritating side effect shows up – now a terribly uncomfortable raw, burning rash. (I can’t have the nausea – for which I have medication…no…always weird stuff.) Nothing seems to help this skin rash in a very miserable area.
With my kind of cancer – it is very rare (so no really good studies for pertinent, specific medication), very aggressive, and no known cure. Yes, I know God could just miraculously heal me, but He has not, and in all honestly, it does not appear that He is going to – here on earth. Goodness knows, I’ve prayed my heart out over that. And I know many of you have, too – and believe it will happen. I do hope you are right – please keep believing.
Who is the man in the Bible who people kept holding his arms in the air, and as long as they did, he kept winning the battle? I’m simply too weak right now to do that for myself.
So, in thinking about the incurable cancer…..how long do I hold on? Am I just putting off the inevitable? Is the extra time worth this miserable effort? I don’t know. I guess that is what ever terminal cancer patient eventually has to ask themselves. These are the questions that hound my doorstep these days. If I knew I was going through this (and the chemo IS working and showing signs of improvement all the time, but never KILLS it!), and I would be cured, and could live several more productive years with some semblance of a fair quality of life, I could stand going through this misery a little better. My brother’s words years ago keep echoing in my mind, “If heaven is so great, why do we try so hard to stay here on earth???” I have to wonder that myself. I’ve said so many times, even though I don’t understand it, and SURELY DO NOT LIKE IT, there has to be a purpose. Some of the purposes that I thought would surely be involved have NOT come to pass yet, and that is VERY discouraging. If I could see particularly 2 events happen, I could say my purpose is fulfilled, and now I can go on to heaven. And frankly, they may not happen until I’m gone. And that breaks my heart. I would just love to have the peace of knowing those 2 things are done. If the “circle” gets broken, then it would have been better that I had not even been born. I MUST see all my family in heaven!!!!
Anyway, I have to ask myself, how long do I reasonably hold on and fight this? I know I cannot make any decisions when I’m so down, I’m looking up at a snake’s belly. That is not the time to try to think rationally. When I’m up, I consider living forever – however long that is. Jeannine suggested that I keep a little journal and rate my days from 1-5. Then look back over the numbers periodically. When the 5s (bad days) are far outweighing the 1s, it gives a more objective picture and helps a bit more in the decision process.
Jeannine helped me look at this perspective, too. So many people are praying and so supportive of me, and for that I will FOREVER be grateful, because I know without a doubt I am still here as long as I am due to prayers. So many people tell me how strong I am, how inspirational I am, what a witness I am, how this and how that. That is a lot to live up to day in and day out. Some days I’m none of that! And then I feel guilty not being able to live up to people’s expectations. The hard, cold truth is I can’t live forever. At some point, I’m going to need permission to move into my heaven mansion – or pup tent – or whatever is being prepared for me. I don’t really care – so long as I eventually get there. Now, don’t everyone suddenly give me permission now! J I’m not quite ready yet to make that decision, but at some point, it will have to come.
You see the craziness in my life right now? Most people (certainly me) go through life not thinking about when they are going to die – it will happen someday – just don’t want to think about it now – have too much living to do. That’s natural. Something would be wrong with the average person if they focused all the time on death and how they might die. I certainly lived all my life that way – focusing on life, and living of my Savior. But when you are put into a position where you have a terminal disease, you are forced to think about death and how you are going to die. And I’m not obsessing about it either. I’m not necessarily afraidof dying. I know with hospice, you are made as comfortable as can be, and I do know that, for me, to absent from the body is to be with the Lord. I just don’t want to go yet!!!! And I don’t like this suffering along the way. A lot of people suffer more than I do – I’m no poster child for suffering. I look a some of those people in the infusion chairs when I get my chemo and think – well, at least I’m not dealing with that! Certainly, there are Christians around the world that are dying for their faith. Christ suffered an agonizing death for ME! So that I could have eternal life with him forever and forever. My suffering certainly pales in light of that!
But when you are in the depths of hurting – physically and/or mentally, it seems as if the whole world is sitting on your shoulders. And you just want it to all go away.
I know if I pour this all out to Dr. Powers when I go to see him, he will just say that perhaps it is hospice time. He is a very compassionate man, and I just love him, but I realize he is a very practical man, too, dealing with cancer patients all the time. He can’t save them all. So far, he has always had “another treatment” to suggest for me. I guess when he runs out of options, perhaps that will be my sign.
At this point, at least, I do not believe that God has turned lose of me. Don’t think I haven’t questioned Him…..I guess until that time, I’ll just try to do my best to remain in this “terribly rocking boat” right now.
And as always……I’m in His hands…..(please don’t let go of me!!!!)
Posted by Sheryl at 11:00 AM
Monday, December 10, 2018
I need to catch up, but this will be short. My fingertips are very tender. This causes me great concern. How bad will this get? Will it be permanent like it is in my feet? My feet are just numb, so thankfully walking, with the proper shoes and inserts does not cause all that much pain. There is no way to play my keyboard this way. It hurts to put any pressure on my nails. What is weird is that the pain didn’t start until about a week after the 2ndround of chemo. The first round just caused a little numbness – even though I used ice during the infusion. Well, there just isn’t anything I can do about it but ride it out. It even hurts to press the keys on the TV remote. 😞
Actually, last week was pretty good to me. I had to take those 5 shots to build my WBC. Took the last one today (until the chemo on Friday drops my counts again). I’ve learned to manage the flu-like SE by taking Tylenol on a schedule. One of the SE that has shown up is terrible drying and wrinkling my face and neck. A peeling rash is occurring, and the area is very itchy. I’ve found that using emu oil is mostly relieving the itching.
The other – and probably biggest issue right now – is that both underarms are very swollen, red, ITCHY, and painful. I have a powerful steroid cream that was given to me during another chemo time that broke my arms out to the point of scabbing. Dr. Powers said to try that, and if it didn’t work, it may be a fungus issue which often happens. I’ll give it a couple days then I’ll switch to the Lamisil if there is no improvement.
My “undercarriage” (as my daughter calls it) is better. The doctor called in a prescription for a strong steroid cream. That has really helped – hasn’t removed the issue, but greatly improved. Thank you, Jesus!!!
Another big issue is sleep deprivation. Didn’t sleep at all last night, so pretty dragging today – plus running a low-grade fever (from the shots) – just enough to make me feel lousy today. The nurse said the doctor could order a low-dose of Ativan. I’m just so reluctant to take sleeping pills – not sure why. I take a Benadryl when I go to bed – to help with the histamine from the stimulated bone marrow.
I did go to SS and church Sunday – wearing a mask. I did enjoy getting back among my support group and worshiping. The pastor’s message was just for me – all about HOPE. I did OK, but wore me out.
I did get a project finished in the basement with my sewing machine a couple days ago. Just had to bust it out!
Mark and Amy came for a visit this weekend. Mark went hunting with a couple of his high school friends. It was so nice to spend time with them. I don’t think people really realize how much it means just to come and visit a bit.
I am halfway through this round of chemo treatments – at least until I go back to KC. It may continue after that. What I can tell you is that it is working. It’s slowly, but it is working. I had this big purple blister at the outer corner of my left eye. It has been drying. The other night it bled out, and yesterday, the purple scab came off. My forehead is flaking big-time – a good thing. There are still 5 scabs yet to come off there.
Today, after I got my shot in McPherson, we stopped at Wendy’s for lunch. This lady (from a group of other ladies) came over to me and asked if we would like some candy from her sack (peppermints). She asked in a very concerned voice if I was OK. I told her yes – I just have cancer on my head. I had one of my crocheted hats on. She asked for my name so she could pray for me. Wow!
I put the most recent pictures at the end.
Things I’m thankful for:
The Christmas spirit – songs, decorations
The Reason for the season
The sun shone today.
My rib has not hurt for weeks.
We didn’t get the big snow that North and South Carolina got.
My favorite nativity set Jeannine gave me several years ago.
My warm home.
Haven’t contracted an infection during these low blood count times. Thank you, Jesus!!
My ladies’ Bible study group who brought us two huge plates of food from the annual Christmas lunch that I could not attend.
My husband who continues to do the cooking, cleaning, and driving where I need to go.
And as always…..I remain in His hands….
Scroll for pictures
Eye is less black. Big blistery scab at outer corner of my eye gone.
Cheek lighter and scaling.
Rash on my neck.
Rash on my cheeks and under eyes. But face is more symmetrical now.
Rash under left arm.
Posted by Sheryl at 11:00 PM
Sunday, November 25, 2018
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.
Thefollowing 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
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.
Posted by Sheryl at 6:12 PM