Our Update

It seems a little funny to be saying “our,” but that is my new reality. First and foremost, what is going on with my daughter and then what God is teaching me through my own issues as well. I’ll be completely honest. It has been very difficult and almost overwhelming! But the God who made me, knows exactly what I need, when I need it! I finally have very caring doctors and nurse practitioners who are able to help  me because they listen! How unusual that has been in my life until I moved here. So I am very thankful for them all.

That said, let me tell you about my daughter and how she is doing. Her PET scan showed that the cancer had not metastasized beyond the breast and two lymph nodes. Apparently there had been a good chance that it had gone to her brain, but again, it has not. She started chemo the middle of November and we had a “Shave the Head party” the night before Thanksgiving at my other daughter’s house with all the family gathered around. How brave she is!! There were no tears, except for mine, when I escaped to the bathroom for a few minutes. That was a hard thing to watch, but she didn’t want to go through the hair falling out and they had promised her that by that weekend it would start.

The hardest thing about the chemo is the bone pain. This was totally unexpected, at least on my part. I’m not sure about her’s. They usually tell her what to expect, when. Still, she said this is the worst pain she has ever experienced in her life. Whatever bones it is hurting, if it’s her knees, as an example. She says it’s like she has been beaten with a baseball bat and her knees have exploded! She asked for specific prayer on those days when she was expecting the bone pain. I put out the word to my Bible study class, Sunday School class and whomever I spoke with. And believe or not, the pain is much easier and she is better able to handle it! Only God could make this happen! She has one more of this particular kind of chemo treatment the day after Christmas, then they start adding other chemo meds in too. Again, we are asking for prayer that she can get through these treatments. 

I have known so many women who have gone through breast cancer chemo, but none shared the details of what they have actually gone through. It’s ugly awful. The other prayer we are asking for is that the tumor will greatly shrink through these treatments.

As for me, I will start neuromuscular physical therapy in January. I have no idea how it will be different from regular PT that I have had before and didn’t help. I am still riding my recumbent bike and doing the stretching exercises with the big elastic band. But none of that has helped with the balance or kept me from falls. I fell twice over Thanksgiving and injured my left hand and wrist and am now wearing a brace, grateful I didn’t break it! But oh my, it hurts!

 I have discovered a new research program which believes they have discovered the “why” of Parkinson’s, Parkinsonism, MSA, ALS, etc. I did sign up to hopefully be a part of their drugl next year. It is not supposed to have any placebos with any patients, or side effects. What they have done so far is remarkable and really could represent a “cure.” That would be pretty awesome for so very many people!

I hope you all have a wonderful Christmas and New Year! Happy Birthday Jesus!

Cindy

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What A God Of Miracles!

The last time I wrote, my youngest daughter had just been diagnosed with breast cancer. Since then, in very short order, she has seen the breast oncology reconstruction surgeon and today, the oncologist. They’ve told her that even though it is stage two, it’s a very aggressive cancer. She is going to go through 20 weeks of chemo which will be very strong with two different meds. The first month to eight weeks every other week they will be letting her body rest between sessions. If she is holding up well, they increase to every week until they are done. Then she rests her body for a month, before having the first of several reconstructive surgeries. Once they are done, she has 12 weeks of another medicine she needs and then she starts radiation. The doctor told her and her husband that she thought they would be done with this before their first anniversary next September!  Yes, that is a long time, but they have to get the tumor smaller and she will also have a PET scan this week to see if the cancer has moved beyond her breast. Once all the work is done, she will take Tamoxifen for five years.

So you may have read all this and wondered at my title. It is literally true though in that the lump was found about a month ago. I know it is just about impossible to get a mammogram, then an MRI, and a biopsy and a meeting with the top breast oncologist reconstruction surgeon in Atlanta–who also told her it would take a week or two for her to see the oncologist–but somehow, three business days later she is meeting with the oncologist who wants to start her life saving treatment next week! This gives her time to have a port put in (surgery tomorrow) a brain MRI, a PET scan and an EKG!

Yes, it is going to be a hard first year of marriage and of treatment. But I know my Lord who gave her both physical and eternal life has her by the hand and will be walking, sometimes carrying her through this. And then through the following years with meds and follow ups and tests. It is hard. I walked a similar path long ago and I didn’t have anything like she has, but you still wonder has it come back every time you have something wrong with you again. AND YOU KNOW I ALWAYS HAD SOMETHING GOING WRONG!

As for me, I just know that somehow God will keep me together for her. For the first time in years, “She needs her mama.” So I am working hard on my physical therapy and have asked for speech therapy help. It will help me with my swallowing and choking problems when I eat and well as some voice issues. Just part of the disease…

What I am asking for–begging for— are your prayers for my daughter, first and foremost. Then secondly that both of us as her parents will also hold up and be able to be there for her and her husband.

Thank you,

Cindy

No Good News Today!

My youngest daughter, the child of my heart called me tonight to let me know the results of her breast and lymph node biopsies. I am so sorry to say that they called early this evening to let her that she has cancer. I knew this was coming because I spoke with God about it last week and He told me that He and she were going to walk a hard path for a while. Still, you hope and pray for a miracle!

Her tumor and the lymph node are large and very involved. She said that the doctor wants to do chemo and radiation before taking anything out. Frankly, she is scared to death! I understand. She is only 42 and newly married. 

Still, I told her that God is on HIs throne. That she had to turn to Him for comfort and understanding and peace. There is NO PEACE without Jesus Christ! She has faith, but I tell you from experience that this is a different, harder walk than anyone can imagine except those who have gone through it. If it were not for Him, I would have NEVER survived all that I have!! And believe me at this moment, I would take her place so that she wouldn’t have to go through this. But God said I mustn’t interfere in their relationship and how it will grow and be close like mine and His. I would never sacrifice all the lessons I have learned through my own trials to get to the point of our relationship too.

This morning’s devotional said that the more praying we have in our world, the better the world will be and the mightier the forces against evil everywhere. Prayer for me is just talking to my Abba Father as He promised to be when He took my dad to be home in heaven with Him. Believe me when I say that since this started 10 days ago/2 weeks? I have been praying constantly, either by voice or Spirit. All I am asking of those who read this post that you be praying too. Her name is Laurel.

Some Things I Learned Recently

This is a very hard post to write. I’ve learned some things recently that are being taught in Bible classes and churches. As a result, I have done a study on what exactly the Bible says about each idea. I realize I don’t have a lot of time to perhaps keep your interest if this isn’t for you or you don’t agree. But I am compelled to write this. I don’t get up easily at 5:30 AM unless God won’t let me sleep any longer. This is one of those mornings.

In studying the Bible, of course I have learned of God’s “predestination” of the saints. I don’t believe that this means He chooses some to be His and some not to be. He has given EVERY created being free will. WE ALL HAVE TO MAKE A CHOICE. FOR HIM TO BE OUR GOD, TO ASK HIM TO FORGIVE US OUR SINS, ACCEPTING WHAT HIS SON JESUS CHRIST DID ON THE CROSS, (DIED FOR EACH PERSON WHO WAS EVER BORN) AND AT THAT MOMENT THE HOLY SPIRIT OF GOD COMES AND LIVES WITHIN YOU. John 3:16-17 says “For God so loved the world, that He gave His begotten Son, that whoever believes in Him should not perish, but have eternal life. For God did not send the Son into the world to judge the world; but that the world might be saved through Him. When I look up the word world, that means everyone who has ever been or ever will be born. EVERYONE. So as some would say, there are elites or chosen, that really no one has a clear choice at one time in their lives to choose for Jesus Christ. The Word of God says everyone has a choice, over and over and over. To not have a choice means that taken to their logical conclusion, that even hell and all who suffer there eternally are foreordained by God. God is so rendered morally ambiguous at best and a moral monster at worst. I believe that it is everywhere free will is assumed in the Bible. It is necessary to preserve human responsibility for sin and evil and it is necessary to preserve God from being responsible for sin and evil of any kind. 

Some will say  “Well, if God created all things, He must have created evil.” NO!! A thousand times no! To say so is to take away the impeccable nature, the pure righteousness, infinite love and grace of God. So where did evil come then? You may remember the story of Lucifer, the created angel of light. He wanted to be like God and have the power of God. So he chose to lead a rebellion in heaven with many other created angels, who also chose to follow Lucifer. There was a battle, but of course God and His mighty angels who chose God won as they will every time. Lucifer and his band were cast out and HELL and the Abyss was created for them. God did not create it for people, but in His foreknowledge, He knew that some day people He would create would not choose to accept HIM as their God or His Son as their Savior. It is not that HE chose, but that we all make our choice. So God allowed the entrance of sin and evil into His good creation but did not cause or coerce.

I believe that it is very important to write this as some might believe that God has sent evil or just bad things in my life to bring me to Him. I would say to that, “Absolutely not!” I have said many, many times how my Lord God has taken care of me in spite of my hard headedness and strong will. Yes, I do believe that things, many things really bad or hurtful in so many different ways happened to me because HE allowed them as way to make me see I am absolutely nothing without HIM and how much I needed HIM as my Savior and my God. Sometimes, little children come to God and they don’t go through all these things. However, I know how stubborn I was.  I didn’t want anyone including God to tell me what to do. I could have turned away from Him in anger and hate with all that has happened to me. I chose to go to Him. He always knew that eventually I would. He is God and knows all things including the future. But it was my choice. It is still my choice every day whether I follow Him by studying His Word, by speaking and listening in prayer. But He has given me the  peace I can have regardless of how sick I am, what is happening in our family or extended family or my business world or the world as we know it today. I know it is there for me, but I have to reach out in trust and thanksgiving to Him. He never leaves me. It is me, when I am in sin, that walks away from Him. Again, my choice.  But how wonderful it is, when I walk back to my Savior and say I am so sorry. I know I have already been forgiven of every sin I have ever done or ever will do. That work was done on the cross by Jesus shedding His perfect blood for me. Still, the Lord expects us to be salt and light to the world. How can we, when we are behaving as the rest of the world does? Sometimes that is my sin. I want very much to be salt and light to the world He has given me to speak to and participate in and with. But again, every day I make that choice. Doesn’t mean He loves me any less or more bad comes my way, but you see now that I have tasted of the Source of Peace, I can’t do without it.

If you disagree with me, I would urge you to ask God to show you all His scriptures concerning our choices. In every case where it talks of God wooing or drawing, there is text above or below that talks about choice. Read the whole thing. Don’t just take a scripture here and there and make a doctrine about it. The books of John, Romans and First Corinthians are great starting places.

Cindy

Asthma and a Hurricane

In case I haven’t ever said, I live in the Panhandle of Florida. That’s right! Where we had a tremendous hurricane last week. From what we have seen of pictures south/west of us and then east, we know that we were truly spared. Foolishly, I thought since my home that was God-given and was only two years old, it would sustain against those winds. I was shocked to read this morning of the different building codes in Florida. Only South Florida is required to build houses or buildings to stand up to such powerful storms!! If ever a storm enters the gulf again, that even looks like it’s coming close, we are going to be smart and evacuate! We are not in an evacuation area, or flood zone, but obviously with the damage done by this storm, it would not have mattered. I know there are still a lot of people missing, especially in Lynn Haven and Mexico Beach. Please pray that they are safe. The first responders are still finding people in desperate circumstances every day.

I also mentioned my asthma. Hurricanes brings low barometric pressure which apparently my lungs don’t like at all. I couldn’t quit coughing, my blood pressure was up and down. The week before, it had been extremely low. Now it was fluctuating, but my highs were on the bottom, which I know aren’t good and hurt my head! I was so thankful when my home healthcare service called and said they were sending a nurse to check on me. I had tried to reach my doctor, but his office was in Panama City by the hospital and I don’t know if it is still standing.

This was a new nurse to me so she had a lot of questions. I just kept coughing. When she finally listened to me and couldn’t really hear me moving air, she insisted that we go to the hospital. Last thing I wanted or felt like doing. My regular hospital was only taking trauma or stroke victims then. So we went. I have to say that first rate healthcare is something we take for granted in our country and we should not. At least I have always gone to a great hospital that could see to me right away. If I had not had my own oxygen, I don’t know what I would done as it was 2 hours before I got any treatments-even a breathing treatment! I hope I don’t have to go back. I am grateful for the medicine I did get. I did have to tell them what to give me though. What an interesting experience. It certainly made me thankful!! And thankful that the nurse made me go as I was sicker than I thought.

That was last Friday. Today of course is Tuesday night. I was finally able to see my new PA with the office where I get my Xolair. It too had been delayed by the storm, so I don’t get it until tomorrow, three weeks late for many different issues! Something else that definitely contributed to this. I have to say that she was one of the most thorough PAs or doctors that I have ever spoken with. She checked every one of my medicines for interactions and for cardiac issues. It seems that my heart isn’t a whole lot better than my lungs unfortunately! My husband has congested heart failure and with Entresto, they have been able to get his heart refraction up to 50%. I was told that mine is 57% from my last Echo Cardiogram. So now we know why I have the overwhelming fatigue! Between the two, I definitely don’t get enough oxygen anywhere! 

STILL, I must say, my LORD GOD is in control! I am not panicked. I am at peace. I can work a little as a I get better and I can continue my Bible study and my writing. Even more, I can love and pray for my family and friends and extended friends.

Cindy

My Youngest Daughter Got Married!

On September the 2nd, our Laurel married Jeff Chaney. He is a young man we are very happy to welcome into our family! It was a lovely wedding attended by close family and friends. If I can ever figure out how to take the pictures I’ve been sent and download them into my picture file, I’ll add one of the bride and groom to a post. It was obvious to all how happy and in love and loved they were!

So this is some of why I have been silent for a little bit. I have been away for the wedding and preparations. I was also still seeing several doctors and visiting emergency rooms beforehand. I think we have my heart figured out now. It’s just a lot of angina, due to a lot of small arteries that can’t be stented. That causes the pain. The good news is I have a new medicine name Repaxa, that I take regularly now for the pain and I don’t have it anymore! So thankful. I got it before the wedding weekend started and that helped so much. Just because I have Parkinson’s doesn’t mean I’m giving up on life, y’all!! I have an appointment with the head of the neuromuscular clinic at U of Florida in November. I will see him and 3 different therapists to help me through this challenge. They will send the info to my doctor and everything will be followed up here with the appropriate therapists. I am very happy that I can get this help. I do think it will make a big difference in the quality of my life!

Some of my dearest friends and family have agreed to be prayer partners and be on an “on call” thread text in case I suddenly need prayer and don’t have time or ability to do anything but alert by me or my husband saying “pray” on the thread. How neat is that. And I am getting devotionals and you tube notes, Bible verses, all kinds of encouragement. Thank you all.

Cindy

Full Disclosure

I had my heart procedure yesterday and guess I wasn’t up to writing this when I re-read it this morning. I have corrected my writing!

The last few times I have written I have alluded to more health issues than I wanted to go into. Last Thursday, I got my DaT scan from Mayo. It is the definitive test for Parkinson’s or Multiple System Atrophy. I have Parkinson’s. Mine seems to be the slow growing kind, thank the Lord. Some people have the aggressive kind and degenerate quickly. My local doctors once told, both said that now everything about me made more sense! All I know is that the brief amount of time that I’ve had to read about it, I do fit with the symptoms. Some I didn’t even want to acknowledge. But they are all there. I don’t shake much because I take an awesome medicine named Primidone that really works for me. I do have some bad days where I seem to shake a lot, but up until now, I’ve just taken another pill. We always thought it was Essential Tremor, but when I read about that, it’s only on one side, one limb. Unfortunately for me, without meds, my whole body shakes. But all the other things you’ve read from my writings, the dizziness, the falls, the fainting, the orthostatic hypotension, post orthostatic tachycardia, and other things I won’t mention are all a part of this.

Everyone has been asking me how I am. I am completely fine, actually relieved! It’s nice to know what’s wrong with you-that you aren’t nuts!!! Even 3 years ago when I wrote about the Ataxia, that was a symptom. I don’t why the local docs didn’t put it altogether, but I am ever so glad for my neurologist in Panama City who did and who has now moved back to Mississippi! I will meet one of his associates for the first time next week and we will decide where we go from here. One wonderful thing is that Mayo has a huge research center for Parkinson’s and they are looking for volunteers-don’t know if they’d have me of course. But at least they have Parkinson specialists there. Another note is that Parkinson’s is a muscle disease. Lungs are muscles, so no wonder I have more trouble with my lungs than just asthma! And the heart is a muscle too of course. I guess that’s why I have trouble with it too.

Tomorrow I am going to the Cath Lab for my second time in less than 2 years. The doc admitted that I have serious heart disease. Not my fault, it’s genetic. Both parents and all four grandparents had heart issues too. Plus I am allergic to the Statin drugs for cholesterol and mine is sky-high regardless of diet.  It will be strictly the Lab, I can’t be carried off to the operating room even if I need it. My lungs won’t stand that kind of operation. So the Lord is going to have to really do some work on me-miraculous work. Say a prayer for me tomorrow ok? The procedure is a 7 am Central time.

So how did things go? I did have complete blockages in some very small arteries  that they couldn’t stent. I also had a partial blockage in a larger artery, but apparently not enough of one to stent. Still all said, enough to make me have the chest pain and breathlessness that I have been having. The doc said he’d be prescribing some additional meds for that. To me, things came out great! I certainly didn’t want to add to my stent count! But it was a wake up call that I need to get back to my physical therapy and recumbent bike riding.

One Psalm that kept running through my head through all of this was Psalm 100:

Shout joyfully to the Lord, all the earth. Serve the Lord with gladness; Come before Him with joyful singing. Now that the Lord, He is God; It is He  who has made us and not we ourselves; We are His people and the sheep of His pasture. Enter His gates with thanksgiving, and His courts with praise. Give thanks to Him; bless His name. For the Lord is good; His lovingkindness is everlasting. And His faithfulness to all generations.

Cindy