Feet and ankles, toes and shins, (toes and shins)

Well, I told you I would get back to you on Thursday, and here it is Wednesday (ok, it’s the next Wednesday… picky, picky).  I will continue all the breathless information regarding me and my Parkinson’s and the shots in my eyes and all of that (including falling on the floor of the hospital and needing an X-ray) but not today.  Today is all about Sam – which I said in the beginning this blog was going to be, but then I had that crazy Dave Barry week.
So poor Sam took the back seat for a while, and I am not going to let that continue.  He is about halfway through his time between chemos, which is about when he begins to feel better.  Although, I have to say, I am very troubled by his response to the chemos.   He has a very sore throat, which is finally getting better (meaning he can eat some soft things instead of being purely on soup like he was for the better part of last week).  He also has a rash covering his entire upper body, and has pain in his feet, ankles, toes, shins and legs, sometimes so bad that he can’t have the blankets on his feet.  The skin on his feet has been literally peeling off and I have had to rub them with cream at night.  He has a big sore on his lower back.
Now the question is why am I telling you this?  Because Sam won’t.  He goes to work every day like he’s just fine.  He goes in and makes everyone believe that he is fantastic, that he has the best attitude ever. (Both true- but he could let down a little). He comes home and cooks dinner or buys it if I can hear there’s enough exhaustion in his voice, and now he won’t even let me clean up because of the tremors (another reason I like when he buys dinner – it’s just throw away). And then he collapses on the couch, done in.  And it breaks my heart.  I want to do for him at least as much as he’s doing for me, and I can’t.
My question is simple –  How do I support him and give to him when I am not physically capable of much at all?
Do not be anxious about anything but in every situation, by prayer and petition, with thanksgiving present your requests to God.  Philippians 4;6

Apologies

Hi everybody,

This is not what you were looking for, neither is it what I was intending to do tonight. Suffice it to say that I started working on the blog shortly after 3:00 and it is now 8:53. Not once but twice I came very close to ending this document and sending it off – and it disappeared.  I don’t understand it.  I definitely can’t explain it.  I was literally looking at it, thinking “I should probably hit the save button one more time” and the whole thing disappeared.  There is a save function, and both times it had saved after the disappearance.

Tomorrow I go for more shots, so I won’t be seeing very well. Probably not well enough to write a blog for y’all so it looks like it might be Thursday.  And I was apologizing for it being Tuesday!  Among other things.

I guess I’ll write on Thursday, till then take care.  Oh, and please pray for Sam. He is struggling- he is going to work every day, even when he has chemo or even worse, the side effects.  Right now, he is going through some severe pain in his knees and toes and feet and ankles, also some in his hips but I think that isn’t as bad as the knees and the whole foot area. But, he still keeps that good attitude, at least at work.  Sometimes he comes home and doesn’t want anything but rest.   Thank you for all the prayers that have already been prayed..

For God, who said “Let light shine out of darkness” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ.  2 Corinthians 4:6

 

 

Get Back Up

I am a huge fan of tobyMac.  He is my absolute favorite artist, and my definite vote for best live show.  My wonderful amazing husband doesn’t agree, and that’s ok.  He can love Casting Crowns – and admittedly, they are great.  But tobyMac just has something very special to say to me.

This weekend, the weekend of the Women’s Retreat, it was this song,  “Get Back Up”.  It wasn’t really so much of a spiritual message as it was quite practical.  I spent a good portion of the weekend on the ground.  I fell, repeatedly.  Seven times if my count was right.  The first few times I was more embarrassed than anything, trying to recover quickly as people came running to see if I was hurt, brushing dirt and debris off of myself, laughingly saying “Oh, I have Parkinson’s.  I fall a lot”.

But as time went on and I continued to fall, it got harder to jump up.  I got weaker and more worn out, and more hurt where I had landed.   My good friend Dorothy had been at my side all the time but she still couldn’t stop me from tumbling over.

As the second day went on, the lovely ladies there were really good to care for me, and make sure there was a chair for me close to the entrance, or easily accessed near the closest breakout group so I didn’t have to walk far.

After lunch the second day, I chose to go rest in my room.  Dorothy was heading for the rope climbing and bungee-cord jumping, so I knew I was not supposed to be there! (40 feet straight up a pole in the air… I don’t THINK so!)

Katie, another dear friend, offered to come with art supplies.  I would normally have loved to do them, but I just needed to crash (the sleep kind, not the falling down kind!)  Katie went to the drugstore and came back with a brightly decorated cane for me.

The cane was a great help, but still wasn’t quite enough, as the last day on our way out,  I took the hardest fall yet.  There happened to be not one, but two young ladies who were EMTs, and they weren’t letting me get away with any nonsense about being fine.  They took my boots off, checked my ankles, checked my elbows, everywhere that I even gasped a little, they said ‘Oh, did that hurt?”  They finally decided I wasn’t in immediate need of medical care – but still had someone get a wheelchair from their car and bring it to me so I could get wheeled to my ride home.

The important part of this whole ordeal is that I started off trying to just minimize the falls, laugh them off, say they weren’t important.  Actually, I started by trying not to let anyone be aware of them at all.  Then I went to minimizing.  When I couldn’t do that any longer, I reluctantly let people help me – and somewhere along the way, i realized that not only was I not putting people out, but that they were being blessed with the opportunity to help me.

The tobyMac song says “So get up, get up, you’re gonna shine again, It’s never too late to get back up again, You may be knocked down but not out forever”

It’s ok to be down but not out forever.  It’s ok to open up and receive, because next time, you might be the one doing the giving. Get up, get up – you’re gonna shine again.

Counting My Many Blessings

This week has continued to be amazing and surprising.

Monday was my first round of methotrexate shots since I was in remission in November. For anyone not familiar with the shots, I’ll give you the short version now- I intend to get farther into how truly awful it was before my angel Ann Bass came to my rescue.  Suffice for the moment to say that from Monday afternoon till Tuesday morning, I couldn’t see anything other than white blur. This was not normal.  Tuesday morning I woke to bright colors, but still slightly blurry, and still no ability to read the font on a computer or text on a phone.  What??  Two days without texting? This was really not normal!

But this morning I awoke with full eyesight and a heart full of praise, as I have had a privilege that very few get – I got to lose my sight for a short time and understand (a little bit) what that is, so that I can truly rejoice in the blessing of having my sight, even if it costs me some pain along the way.

Then on Tuesday, I got a phone call from Karen MacLemore, telling me that there was a scholarship to our church’s Women’s Retreat available for me.  If I was interested.  IF??  I had wanted to go every year, but I had always worked Friday AND Saturday, and couldn’t get the time off.  I happen to now be between jobs as the moment, but because of that, I knew we didn’t have the money for me to attend.  So when Karen called with this gracious offer, I was so pleased to be able to say YES! It’s Wednesday and I’m already packed, with my favorite snuggy sweater, snacks for my roomies (I don’t know any of them, and I want them to like me) and my iPad Bible.

I don’t know who was the kind and gracious giver of this scholarship, but I would like to say “thank you”.  Thank you for feeding into my soul and my spirit.  Thank you for helping me in the mission of our church: “More people, living real life, by passionately following Jesus”.  Thank you for feeding new thoughts and ideas and uplift into me that will overflow to my husband, my family, my small group, and so many others that I may not even realize that I touch with my life.  Thank you for your generosity and love.  It has been received with much joy, and when I am able, will be paid forward.

 

I’m not making any of this up

I have a huge admiration for humorist Dave Barry who writes for the Miami Herald and has also written quite a few books.  One theme that has carried through his books is “I’m not making this up”  People write to him and enclose bizarre or funny news items like the town that had a dead beached whale and so they decided to get rid of it using dynamite.  It rained bloody chunks of whale for miles.  You can’t make stuff like that up.

.This week has been something I could not make up.

You may remember me saying that I decided to start writing this blog again on Tuesday, expecting to simply tell the story of Sam’s journey with his lung cancer, and also back up through my primary optic lymphoma and tell that story, of all the miracles God has done for me. And I will still do that. But, as I said, I decided to start writing this blog again after a 6 year hiatus, on Tuesday.

I had been told, for the third time, that I was in remission.  Less than three weeks after I was told that I was in remission, we got the news of Sam’s lung cancer.

Wednesday, I got the news that I was no longer in remission.  The cancer has returned to my eyes, and I will be starting shots on Monday.

Friday, I met with a neurologist, who diagnosed me with Parkinson’s disease.  I have been having symptoms for a long time, but never put them together to figure out that I have Parkinson’s.  The most recent thing was falling – I started falling somewhat often.  Sam encouraged me to go online and see what I could learn about the falling.  As I searched multiple websites, I realized I was seeing a pattern – many of my symptoms were being repeated over and over – hand and leg tremors, handwriting deteriorating, voice getting softer, mask-like face.  I came to suspect that my problem was actually Parkinson’s, and when I went to the neurologist on Friday he agreed and gave me medication to help control the symptoms.   It is treatable but not curable (where have I heard that before?)  I am hopeful that this medication will be helpful.  If not, there are other options.

As I said earlier, this has been quite a week.  I’m not making any of this up – I wish I was, it would be a great April Fool joke.  But I’m not.  What I am doing is very deliberately putting all of this into the hands of Jesus, where it is gently held and lovingly cared for.  I choose to believe that.  His Word is true.  I know that we will face trouble  – Jesus told us so.  But he had a wonderful addition to that warning.

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  John 16:33

Getting back to the middle

I told you previously that I had been told three times that I was in remission.

I returned to writing this blog two days ago.

Ironically, I learned that I am no longer in that third remission  – yesterday.

This is an exercise in trust in God that I’m not sure I’m prepared for.  I read over some of the entries in my original blog and thought “Where did that come from?”  Those thoughts, those ideas, they weren’t mine.  Not all of them, anyway,  And whatever it was that happened, when I faced the first diagnosis, the total  peace and assurance that God was in control and this was all for His glory – it wasn’t there the next time.  I wanted it.  I prayed for it, and I begged for it.  I cried over it and I sulked over it.  But what I needed to understand was that it was a gift, for that specific time.  I finally sat down with a trusted friend, who told me “It might just be that God knows that some people won’t be able to relate to your easy peace.  It might mean more to them to know that you struggled.”  I heard him.  And I did say from the beginning that I was going to be bottom-line honest with this blog.  I just didn’t have to like it.

So, I am scared, once again.  And I am facing a truth that I had been in denial over – this isn’t going away.  I might make it into remission again, and even again.  But there are no guarantees, and apart from God working a miracle, the end could be much closer than I had thought.

So, where do i go from here?  There are only two real choices.  I can worry and make myself crazy, look up everything i can find about primary ophthalmic lymphoma (not a good idea, by the way), or I can make a clear choice to trust God with my life.  A real choice, like I have been claiming to do and trying to do for a long time – but now stuff’s gotten real.  My life is truly in his hands.  And Sam’s too.  And I have to tell you,  going back to that brutal honesty thing again, that right now I feel a whole lot more like crying than like singing or praising God or giving thanks.  But those are the instructions – and it doesn’t work to go by our feelings, now does it?  So going back to something I started this whole journey off with:

Philippians 4:16 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

That’s pretty self-explanatory.  Don’t be anxious about ANYTHING.  Easier said than done, but I’ll do my best.  Oh, wait, my best isn’t good enough.  In fact, I seem to remember it’s called garbage, refuse, even dung,   So then what am I supposed to do?

When I finally realize that I truly can’t do anything that pleases God, that is the very beginning of understanding grace. And believe me, i am just at that very beginning.  Just trying to wrap  my mind around it, after all the years of feeling not-good-enough, feeling less-than, feeling like if I didn’t try my hardest I would be disappointing God.  And all this time, he has just been waiting patiently for me to accept what he has done for me.  Period.  Am I the only one who gets completely dazzled by that?

Galatians 3:12 msg The person who lives in right relationship with God does it by embracing what God arranges for him.  Doing things for God is the opposite of entering into what God does for you.

OK – stop.  Read that again.  “Doing things FOR God is the opposite of entering into what God does FOR YOU”

That’s about enough for today.  I’m going to ask for your prayers, for me and for Sam.  I didn’t expect to be back here, and certainly not when he was going through this himself.  My heart hurts for  him – but he is handling it so well.  I have much to learn from him.

 

 

So, how have you been doing?

Great to be back, even though I didn’t really anticipate it.  We have a lot to catch up on, and I will be doing the movie-style flashback for a while, until we’re up to date.  Some of you know some, a few know all.

But right now, I  want to start in the present and go from there.  If anyone remembers my last p0st from 2011,  (yes, it’s really been that long),  I was planning to write a book based on this blog. And I did.  And I added to it.  I’m wondering if the reason that God hasn’t opened a door for it yet is because the story isn’t over.  Not by a long shot.

The short version – I promise to go deeper later – is that in November 2016 I was told for the third time that I was in remission, and that it looked like my oral chemo medication was all that was going to be needed to keep me there.  “Overjoyed” is way too bland of a word for how we felt.  We were ecstatic – Sam and I, my family, Sam’s family, our friends, our church…

Less than three weeks later, my amazing and wonderful husband Sam was seeing an orthopedic for a frozen shoulder.  Physical therapy was prescribed and an X-ray was taken.  The next day, Sam got a call from the doctor’s office. There were some shadows showing on the lungs in the X-rays. They wanted a CT scan, which showed suspicious nodules.  A lung biopsy was ordered.

After a much longer wait (that I was ok with, going on the theory that no news is good news), we had an answer.  Stage 4 lung cancer.  The doctor said it’s Stage  4 because it is in both lungs.  He said it isn’t curable, but it is treatable.  So we are going to treat it and trust God.

The really incredible thing is, it’s a glandular cancer that has nothing to do with smoking.  Sam was a smoker who quit 18 years ago, and here he is with lung cancer.  Of course, those of you who know his sense of humor won’t be surprised to know his response to learning that was “Oh, so I can start smoking again?”

So here we are, starting over again, again, again.  Sam just finished his second round of chemotherapy.  He has lost all his hair (including his beard and at this point, most of his eyebrows) and I sometimes fail to recognize him right away.

But how we got here is a whole story in itself.