Hello friends and family. Just wanted to give you an update on what's going on here. I have been waiting for test results before posting and I think we have as much information as we can get for the time being and hopefully a plan, at least for the near future anyway.
The good news that we are rejoicing in is that both the MRI and the EEG came back clear. Truly, we are so thankful for that. That sentence can't begin to express how thankful we are. We would, very quickly, be dealing with a whole new set of circumstances so to know that that isn't the case gives us great relief. The question still is what exactly is causing these neurological episodes and for that we don't have an immediate answer. There are several possibilities though so we are being cautious in moving forward.
One possibility is that I am dealing with some sort of neuropathy. This could be damage from chemo, we are not really sure. Another possibility continues to be a TIA, or a Transient Ischemic Attack. Cancer patients are at an increased risk of stroke due to several factors and TIA's can also be a warning of future dangers. I've had one Doctor tell me that he believes that these episodes are the physical manifestation of debilitating stress and anxiety. I do have stress and anxiety to be sure but I would not consider it debilitating. My family Doctor is more inclined to agree with the neurologist that while yes, anxiety does play a role during an episode (can you imagine experiencing stroke like symptoms and not feeling anxious?), it is not the cause. She prescribed an anti seizure medication that appears to be working and I am so thankful for that. I haven't been able to get up to the full dose though because about half way there, I developed a rash so I scaled back on it right away. A rash associated with taking this particular medication has the potential to be quite dangerous. This is an extra risk, albeit a small one, that I'd rather not have. So I remain at a half dose for now but it has made a noticeable difference and for that I am thankful. One of the other unfortunate side effects is insomnia so any night I am able to sleep is such a blessing. It's funny the things we have always just taken for granted that are suddenly incredible blessings when we are able to have them again. A good night's sleep is invaluable to keeping things in their proper perspective. Please pray that this medication would continue to be safe and effective. We appreciate it so much! Another chest/ pelvic CT scan has been ordered for the end of the month so for now, my job, along with my family, is to stay home and stay healthy.
That brings us to the current world climate. It is unbelievable that we are living in such an unprecedented time. I have been self isolating for quite a while now. I just passed the 14 day mark since my last hospital visit and I will continue to self isolate now for as long as is necessary. I am considered immune compromised so the decision was made by myself and the oncologist to discontinue chemo treatments for now. The thought is not lost on us what could happen if I was to contract Covid-19. It is helpful that we have been more aware of germs in the months since I started chemo so thankfully, we are already used to practicing good hygiene habits. LOTS and LOTS of hand washing and cleaning and sanitizing! Everyone here has been really great about helping out.
Our lifestyle hasn't changed too dramatically as we are used to spending time at home but the kids are definitely missing their regular activities, jiu jitsu and music lessons etc. Otherwise, school carries on as usual with lots of extra time outside for fresh air and exercise. We did, however, wake up to snow this morning so we are enjoying an inside day today. We have also had to get creative in how we celebrate birthdays as we enter birthday season here (4 in a month!) but thankfully everyone is old enough to be understanding of the situation.
As hard as it is to comprehend what is going on in the world, the feelings some may have are not new to us or to anyone struggling with (or that has a loved one struggling with) a terminal disease. What is going on? Why is this happening? How do I deal with these feelings of anxiety? Will we ever get through this? Will my life ever be normal again? What if (when) my loved one dies? These are the same questions that we as a family have been dealing with for the last 9 months and to a certain degree, for the last 13 years since my original diagnosis. I have had my baby girl on my knee (Yes, she has been curling up close to me a lot these days) and I can't assure her that everything will be ok. I simply don't know that and I won't make her any promises that I can't keep. What I can do is reassure her that the Lord who so lovingly and carefully takes care of the sparrows, will surely look after us as well. Does this mean that everything will work out the way we want it to? No, no it does not. Does this mean that there may be grief in our lives? At some point, absolutely. But what gets me through the days and some incredibly long nights is my belief that the Lord is with us. Immanuel. It literally means God with us. I am 100% convinced that neither life nor death, nor things happening or things to come will EVER be able to separate me from the Love of God. This is why I can face the uncertainty of tomorrow. Am I great at doing this? No, not always. I very well understand the feeling of knowing what to do but not always knowing how to do it. Many a tearful night has been spent flat out, crying out to Lord. I have had a handful of times this year when I truly thought that I would soon be with the Lord. Every day that I wake up and last night's episode didn't accomplish that, my goal is to thank the Lord for that day and for the breath that He lends me for that day!
We should not be living like we are promised tomorrow. We certainly are not. We should always be ready for the day that is to be our last.
...so now also Christ shall be magnified in my body, whether it be by life, or by death. For to me to live is Christ, and to die is gain. Philippians 1:20b-21
We should not expect this life to be free of trouble, in fact, we should expect the opposite. We WILL have trials and troubles.
These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world. John 16:33
This world is not our final home and we should not be living like it is .
For this world is not our permanent home; we are looking forward to a home yet to come.
Hebrews 13:14
Ultimately, this is why our time spent in the Scripture and in prayer is so important. The Lord wants us to trust Him and focus on Him. Not on the circumstances around us. He is in complete control.
Some days, that is all that gets me through. Otherwise, I can easily give in to anxiety. Be still. That is my hope for you too, dear friend. That along with me, you will be still and trust God whatever the outcome. Because He is Good.
The Lord is good, A stronghold in the day of trouble, And He knows those who take refuge in Him. Nahum 1:7
When we are overwhelmed, we know that we can take refuge in the Lord. That is so comforting and brings such incredible peace!
I like what Martin Luther had to say 500 years ago on the subject of a pandemic.
“You ought to think this way: ‘Very well, by God’s decree, the enemy has sent us poison and deadly offal. Therefore, I shall ask God mercifully to protect us. Then I shall fumigate, help purify the air, administer medicine, and take it. I shall avoid places and persons where my presence is not needed in order not to become contaminated and thus perchance infect and pollute others, and so cause their death as a result of my negligence. If God should wish to take me, he will surely find me and I have done what he has expected of me and so I am not responsible for either my own death or the death of others. If my neighbor needs me, however, I shall not avoid place or person, but will go freely.’”
Lord help us as we wait this out.
One possibility is that I am dealing with some sort of neuropathy. This could be damage from chemo, we are not really sure. Another possibility continues to be a TIA, or a Transient Ischemic Attack. Cancer patients are at an increased risk of stroke due to several factors and TIA's can also be a warning of future dangers. I've had one Doctor tell me that he believes that these episodes are the physical manifestation of debilitating stress and anxiety. I do have stress and anxiety to be sure but I would not consider it debilitating. My family Doctor is more inclined to agree with the neurologist that while yes, anxiety does play a role during an episode (can you imagine experiencing stroke like symptoms and not feeling anxious?), it is not the cause. She prescribed an anti seizure medication that appears to be working and I am so thankful for that. I haven't been able to get up to the full dose though because about half way there, I developed a rash so I scaled back on it right away. A rash associated with taking this particular medication has the potential to be quite dangerous. This is an extra risk, albeit a small one, that I'd rather not have. So I remain at a half dose for now but it has made a noticeable difference and for that I am thankful. One of the other unfortunate side effects is insomnia so any night I am able to sleep is such a blessing. It's funny the things we have always just taken for granted that are suddenly incredible blessings when we are able to have them again. A good night's sleep is invaluable to keeping things in their proper perspective. Please pray that this medication would continue to be safe and effective. We appreciate it so much! Another chest/ pelvic CT scan has been ordered for the end of the month so for now, my job, along with my family, is to stay home and stay healthy.
That brings us to the current world climate. It is unbelievable that we are living in such an unprecedented time. I have been self isolating for quite a while now. I just passed the 14 day mark since my last hospital visit and I will continue to self isolate now for as long as is necessary. I am considered immune compromised so the decision was made by myself and the oncologist to discontinue chemo treatments for now. The thought is not lost on us what could happen if I was to contract Covid-19. It is helpful that we have been more aware of germs in the months since I started chemo so thankfully, we are already used to practicing good hygiene habits. LOTS and LOTS of hand washing and cleaning and sanitizing! Everyone here has been really great about helping out.
Our lifestyle hasn't changed too dramatically as we are used to spending time at home but the kids are definitely missing their regular activities, jiu jitsu and music lessons etc. Otherwise, school carries on as usual with lots of extra time outside for fresh air and exercise. We did, however, wake up to snow this morning so we are enjoying an inside day today. We have also had to get creative in how we celebrate birthdays as we enter birthday season here (4 in a month!) but thankfully everyone is old enough to be understanding of the situation.
As hard as it is to comprehend what is going on in the world, the feelings some may have are not new to us or to anyone struggling with (or that has a loved one struggling with) a terminal disease. What is going on? Why is this happening? How do I deal with these feelings of anxiety? Will we ever get through this? Will my life ever be normal again? What if (when) my loved one dies? These are the same questions that we as a family have been dealing with for the last 9 months and to a certain degree, for the last 13 years since my original diagnosis. I have had my baby girl on my knee (Yes, she has been curling up close to me a lot these days) and I can't assure her that everything will be ok. I simply don't know that and I won't make her any promises that I can't keep. What I can do is reassure her that the Lord who so lovingly and carefully takes care of the sparrows, will surely look after us as well. Does this mean that everything will work out the way we want it to? No, no it does not. Does this mean that there may be grief in our lives? At some point, absolutely. But what gets me through the days and some incredibly long nights is my belief that the Lord is with us. Immanuel. It literally means God with us. I am 100% convinced that neither life nor death, nor things happening or things to come will EVER be able to separate me from the Love of God. This is why I can face the uncertainty of tomorrow. Am I great at doing this? No, not always. I very well understand the feeling of knowing what to do but not always knowing how to do it. Many a tearful night has been spent flat out, crying out to Lord. I have had a handful of times this year when I truly thought that I would soon be with the Lord. Every day that I wake up and last night's episode didn't accomplish that, my goal is to thank the Lord for that day and for the breath that He lends me for that day!
We should not be living like we are promised tomorrow. We certainly are not. We should always be ready for the day that is to be our last.
...so now also Christ shall be magnified in my body, whether it be by life, or by death. For to me to live is Christ, and to die is gain. Philippians 1:20b-21
We should not expect this life to be free of trouble, in fact, we should expect the opposite. We WILL have trials and troubles.
These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world. John 16:33
This world is not our final home and we should not be living like it is .
For this world is not our permanent home; we are looking forward to a home yet to come.
Hebrews 13:14
Ultimately, this is why our time spent in the Scripture and in prayer is so important. The Lord wants us to trust Him and focus on Him. Not on the circumstances around us. He is in complete control.
Be still and know that I am God. Psalm 46:10a
Some days, that is all that gets me through. Otherwise, I can easily give in to anxiety. Be still. That is my hope for you too, dear friend. That along with me, you will be still and trust God whatever the outcome. Because He is Good.
The Lord is good, A stronghold in the day of trouble, And He knows those who take refuge in Him. Nahum 1:7
When we are overwhelmed, we know that we can take refuge in the Lord. That is so comforting and brings such incredible peace!
I like what Martin Luther had to say 500 years ago on the subject of a pandemic.
“You ought to think this way: ‘Very well, by God’s decree, the enemy has sent us poison and deadly offal. Therefore, I shall ask God mercifully to protect us. Then I shall fumigate, help purify the air, administer medicine, and take it. I shall avoid places and persons where my presence is not needed in order not to become contaminated and thus perchance infect and pollute others, and so cause their death as a result of my negligence. If God should wish to take me, he will surely find me and I have done what he has expected of me and so I am not responsible for either my own death or the death of others. If my neighbor needs me, however, I shall not avoid place or person, but will go freely.’”
Lord help us as we wait this out.
~ Sweet Hour of Prayer ~
Sweet hour of prayer, sweet hour of prayer,
That calls me from a world of care,
And bids me at my Father's throne,
Make all my wants and wishes known!
In seasons of distress and grief,
My soul has often found relief,
And oft escaped the tempter's snare,
By thy return, sweet hour of prayer.
Sweet hour of prayer, sweet hour of prayer,
The joy I feel, the bliss I share,
Of those whose anxious spirits burn,
With strong desires for thy return
With such I hasten to the place,
Where God my Savior shows His face,
And gladly take my station there,
And wait for thee, sweet hour of prayer.
Sweet hour of prayer, Sweet hour of prayer,
The wings shall my petition bear,
To Him whose truth and faithfulness,
Engage the waiting soul to bless;
And since He bids me seek His face,
Believe His Word and trust His grace,
I'll cast on Him my every care,
And wait for thee, sweet hour of prayer.
Words: William W. Walford, 1845
Music: William B. Bradbury, 1861
Blessed be the Lord, because he hath heard my cry for mercy. The Lord is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him. The Lord is their strength, and he is the saving strength of his anointed. Save thy people, and bless thine inheritance: feed them also, and lift them up for ever.
Psalm 28:6-9
Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? ... For I am persuaded that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God,
which is in Christ Jesus our Lord.
Romans 8:35, 38-39
Sooooo good to hear!
ReplyDeleteThank you so much for posting this. I continue to pray and think of you often Esther.
ReplyDelete