Quick Little Update

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Ok, just a couple of things for you to be praying for, if you would.

  1. My official date of admission to the hospital is now going to be Thursday, July 27, instead of Friday the 28th.  I know it’s not a big deal, but it’s changing, and I don’t want everybody waiting till Friday to pray for me!
  2. There will be three days (Monday-Wednesday, June 24-26) when I will be getting some type of infusion therapy that will act as a prophylactic to prevent the worst of the mouth sores.   I have been told that they are incredibly bad with this chemo.  I do, however, have incredible mouthwash from Melaleuca which saved me and a few other people from the sores from my first chemo, just wiped them right out, so I will be taking that as well.
  3. Please pray for my parents.  They are giving us so much – they were here several weeks ago for a long period and basically took over everything in the house, which was incredible – and now they have said they will come back again for my transplant.  Amazing, right?   The problem is, even though we got an admission date, it is very hard to predict when I will recover adequately.  It could be under two weeks, it could be over three.  And getting them a ticket home is not something that can be done at random.  My son Marky is getting married on August 26th.  Whether I can be there is pretty questionable, considering the scary condition my immune system will be in.  But my parents… they need to be there.  It would break my heart to stop them. So they need a ticket back on the morning of the 25th at the latest.  I’m praying.  I would appreciate your prayers as well.

Don’t worry about anything, instead, pray about everything.  Tell God what you need, and thank him for all he has done.  Philippians 4/6

Singing Praises

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There is good news to report, and I am not going to waste time! God was truly with me this week, starting with the injections going Friday-Monday.  I was prepared for them to be just as awful as the first time I had chemo, only then I only got them once every three weeks, not four days in a row!  They caused the worst migraines I had ever gotten and bone pain that felt like they were breaking inside of you.  And I couldn’t take anything because of liver and kidney damage that threatened me, so it was no fun.

But this time, I got the first shot and waited for the pain to start.  And it didn’t.  At all.  Saturday, the same thing.  Sunday, the same.  Monday, the same! NO PAIN at all!! I was praising God for sure.

Then, also on Monday was the catheter insertion.  This I was truly dreading, imagining scalpels in my neck, and what kind of catheter was it going to be, anyway? Well, the Lord took wonderful care of me! Sam took the call saying I didn’t need to come back the next day. (Usually people do have to, but I had harvested enough cells in one day!)  We went back and I was surprised to find out that they take the catheters out without any pain killers at all.  But when they were actually proceeding, it was quite pleasantly painless.  And instead of huge scars, I have three little scratches on my neck, that hardly show.

Now, I just have to wait for the chemo to start.  I was misinformed about the start date – I had the idea that it needed to be immediate because of lack of immune system.  This is not the case.  I have some white cells left even though I did harvest many of them.  And they are multiplying.  It’s the chemo that will harm them or kill them.  Then I will receive an infusion of the “new” cells.

The admission date has been tentatively set for July 28.  This doesn’t leave me much time to try to get to my son’s wedding on August 26.  They are saying 2-3 weeks recovery and then 2-3 weeks at home.

It’s in God’s hands.

Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that” James 4:15

 

 

 

 

It’s Been A Long, Long Time

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There is much to share with you, and it has been a long time.  I have to be careful on one side not to leave anything important out – and on the other side, not to get caught up in too much detail making this into hundreds (well, dozens) of pages.  (I am sure that I can hear both sides right now – one saying “Kim, you could NEVER give us too much detail!  Pour it on!” and another on saying, “Yeah, keep it brief.  Bullet points, ok?”)  So I will try to give enough detail to make it interesting but not so much that you drown in it.

My last blog was actually posted April 26th.  I was pretty surprised by that – I had no idea it had been that long.  I have not had a very good grasp of time, quite honestly.  I haven’t worked since two weeks in early March, before that, not since late January.  I thought I was just lazy, too old, out of shape, maybe even early Alzheimer’s? I was totally exhausted, couldn’t get any energy to do anything, my memory was terrible (we aren’t just talking forgetting “what did I come here for?”  I couldn’t remember the names of people I knew well, or the simple names of foods or items.  They came back, but it was always scary.)

I noted a few blogs back that I had recently been diagnosed with (Here I go again, I can’t remember the name for this disease!  I’ll get it or look it up).  With PARKINSON’S!  Yay me!  Anyway, that was assumed to be the answer to the falls and the memory loss and other things.

Then, I fell in the hospital (you might remember seeing that in my very last blog – but it was just a filler.)  My ophthalmic oncologist was there and insisted on me going to the ER and getting it looked at since I was refusing an EMT ride. My doctor even told me she would call me later to make sure I went, so I had to go.

This wasn’t a little spill, I had fallen face-first into a trash can knocking it down, smashed my glasses, given myself a black eye.  It’s a good thing several people saw me or Sam could have been seriously under suspicion.  The ER doctor called and wanted to see us right away.  He showed us the x-rays and pointed out the (rather large) tumor in the brain.  Whoa!  We had no idea.  I had been on a medication that was supposed to prevent anything from forming in my brain – but it was only 78 % effective, and I was one of the 22%

We took the x-rays to my general oncologist immediately (like that afternoon) and he said we needed to go to the hospital, now, and get some high-dosage methotrexate.  This is what they use to treat arthritis, except they use low-dose of 15-35 mg daily for a 5 day course, repeated for 3-5 weeks with a rest of 1 or more weeks in between.  We were given HIGH-dose methotrexate of 1200mg daily with flushing out of the body for the remaining 4-5 days.  This was done every other week, and although some improvement was seen, the tumor didn’t disappear or even shrink enough to come close to remission.  It pretty much made slow improvement as long as I didn’t stop with the treatments.  Obviously, my doctor didn’t feel like it was getting the job done.

So we are now at the Bone Marrow Stem Cell Transplant portion of the treatment.   This is a pretty big deal for us.  I have had my EEG and breath tests, my brain MRI and my spinal tap, and a bunch of other tests I just can’t remember.  I’m pretty sure there were 8 that were in one night.

Yesterday I had my first shot in a series of four (one per day), followed by one today – imagine that! These shots I recall from my first chemotherapy as being insanely painful.  Both head-splitting migraines and bone pain that felt like your bones were being broken in your body.  This medication is slightly different, but they still warned us about all these possibilities.  So far, though, there is nothing.  NO PAIN!  I realize I have 2 more days.  But the last ones started within half an hour or less.  This is good.  Very good.

Monday will be the insertion of my neck catheter.  It is supposed to look a lot like a dialysis machine.  It will be used to get the white cells out of my blood, get them into the freezer, and get the red stuff back in my veins.  This could be 1-2 days.

Then I wait for a definite day for the chemo.  It won’t be long – hopefully day they take the cells, or at least the day after, because I won’t have any real immune system until they go back in, and the chemo has to happen first.  And you know the drill – hair loss, nausea (supposed to be better with meds), mouth sores (supposed to be really awful, but we will see) and so on.  It won’t be fun for a few weeks – but then I will slowly start to feel better.

As far as my being out of work and dealing with the medical bills, God has been more than faithful and we know that He will continue to be.  We have had a GoFundMe created, and received personal donations that have been blessings beyond words.   Gift cards for meals have also been so helpful.  We are incredibly thankful and humbled by the people God has brought to be with us in our battle.

Come see me – just wash your hands first 😉  I’ll let you know when I am in a room for the hospital, but that won’t happen until they give me a date for the chemo.  I’ll need my mind taken off that, I’m sure!!     Love you all, near and far.  If you’re far, call me or text me.  I’ll even be brave and put my phone number here!

Kim  402-502-7636 imagine that!

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 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

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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

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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

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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.